I hope this symptom list helps you guys out! I think hearing exactly what my early symptoms were (in my words from back then!) has the potential to help a lot of people who are as confused as I was just a few months ago
Yep. I was one of those people whose doctors who kept telling them it was just a migraine. Get over it. I lived with bedridden"migraines" since I was 13 until I was 38 and one day literally woke up blind. My husband called my neurologist and she said to take me to any eye doctor immediately. As soon as my eye doctor appointment was over my neurologist called us back and said go to the ER right now don't wait because a neurosurgeon was on stand-by waiting for my arrival and they finally knew what was wrong. Yep, it was IIH. My opening lumbar pressure was 55 and I had to have emergency shunt surgery. I regained some of my vision but I still have the brain fog, weakness, body pain, ringing in the ears, dizziness, nausea, speech issues at times, problems with finding the right words, correct spelling at times, severe headaches, numbness in my hands, and gastric issues. Also, their are many doctors including my neurologist who have are now disputing the connection between IIH and weight. In fact, it looks like I developed it at 13 when I was 110 lbs and didn't weight over 150 lbs until 6 years ago. It looks like mine was caused by a combination of medications I took when I was younger and a growth on my pituitary gland pressing on it blocking the fluid from draining properly.
I hope you are writing every single doctor who mis-diagnosed your condition. You need to explain to them how there mis-diagnosis changed your life and the damage they caused. They need to know. Cheers to you for being determined enough to keep fighting and smart enough to not accept their wrong diagnosis. Your super mom.
I always feel a little bad for not chasing down the doctors who didn't diagnose my thyroid problem, I suspect medicine would be so much better if doctors got better feedback. Afraid sometimes I've just left the bad doctors without even explaining, but of course that is always the point where I have the least energy to explain. Maybe something we should push for via medical records. I know the doctors here get feedback on what drugs they are prescribing (showing things like if they are keeping up to date, but mostly I fear cost control), but not heard so much about them under or over diagnosing conditions. Even my mother's condition that led to lung transplant and her eventual death had her diagnosis adjusted/corrected by the transplant team, although in fairness to her doctor the diagnosis was adjusted from what it looked like (with caveats) to a diagnosis that didn't exist when the previous diagnosis was first made. The 100,000 genome project here recently reported adding a new diagnosis for 25% of participants, so there is hope of improvement coming.
I don't think I've seen you this happy before, especially not when discussing your health! I'm so glad you're feeling a bit better already, and I hope you keep improving!
Yes! Yes! Yes! I'm so happy that you got properly diagnosed. I'm sorry that the health care system failed you. As a future health care worker, I hope to be an advocate for patients like you.
I am so glad you finally found the right doctor. I had Breast Implant Illness which is just a label for a whole list of issues. But it took many misdiagnoses and many doctors when finally I found a doctor that was 80% on the side of believing in bII. I am almost 2 years out from having my implants removed correctly and all my strange illnesses have disappeared. What a relief!! But how scary it was when I thought I was going to die and was being laughed at by doctors.....I'm so excited for you to finally be on the recovery side of this.
My eye doctor caught my IIH before I started having noticeable symptoms. Listening to you and others I’ve since come to realized how lucky I was. Mine came on very quickly, and progressed rapidly to the point where 2 weeks from not even realizing I was sick and my eye doctor telling me I needed an MRI my symptoms had gotten so bad I could barely get out of bed and I now have permanent scaring on my optic nerve from the swelling. My eye doctor wasn’t the most up to date on research and started me off on to low of a dose of Acetazolamide but he helped me get in to see a Nero-ophthalmologist who specialized in IIH treatment and 3 months later my symptoms were gone. It took me nearly a year and a half to titrate off the medication, but I’m in complete remission. I find it more concerning that your eye doctor didn’t diagnose you after seeing the optic nerve swelling or seek further testing, especially since the swelling was bad enough to do an MRI. Just googling “cause of optic nerve swelling” brings up loads of info on IIH.
I have a very similar story with my journey of being diagnosed with IIH! At first we thought it was a CSF leak, but it turned out to be the opposite. It took quite a few years. I actually asked about IH at the mayo clinic but they told me there was no way I could have it because I was thin/not overweight. Turned out my pressure was through the roof! I'm so glad you finally got an answer and are starting to find relief! You deserve it ❤
I have several of those symptoms except the ear pressure/popping and fluid leakage. I’ve had neurologists and drs laugh me off for so long. I’m SO happy you’re getting answers and infuriated hearing your onset symptoms notes to to DOCTORS who clearly didn’t think long enough about the MANY things clearly not migraine. Thank you for reminding me to continue being my own researcher and try as many doctors as I can. So grateful you’re finally in the light at the end of the tunnel. You have suffered like a freaking warrior and inspire me to keep pushing after 15 years of no clear answers = stress must be the cause. I’m so fired up! And so happy for you! 🙏🏻
Have you found your true diagnosis? If you haven’t yet, I’m praying you do. Keep up your search. And you’re not crazy - you know your body. Best to you 🙏🏻 ♥️
I am just crying and nobody understand this pressure,I get no absolutly nothing treatment.I have Avm....So thank you for you are just like me,all the best in life hugs from Norway !
So I went to this doctor's website and I have stopped crying in the last 15 minutes. I feel so validated. I've gad symptoms of POTS since March of 2019 and got told I was lazy, crazy, and attention seeking. I have so much more than tachycardia but that's all anyone ever addresses. My worst symptoms are the adrenaline surges! I always have severe impending doom, HR in the 160s, diarrhea, shaking, blue fingers and toes, temperature dysregulation, delirium, and flushing. It terrifies me every time it happens. I have blood pooling in my legs, crushing fatigue, tingles all over my body, nerve pain, nausea, headaches, fibromyalgia symptoms, dry eyes, erroneous sweat activity, etc etc. I already have EDS and Hashimoto's as well as a pituitary tumor and IBS. So reading all of this research on Dr. Driscoll's site and hearing what you're saying is just so... unreal. I'm so happy for you!
Hey girl! I just seen your comment and it makes me so happy to see someone get their answers. I got Jen’s good news video and now seeing your comment lol. I hope you get the treatment you deserve! I could only imagine how hard things must have been for you. Everyone I’m reading here, actually.. My Prayers and good vibes your way! I hope you get your relief soon! 🙏🏻♥️
I'm glad you got a diagnosis! When I went to the ER, I begged them to do a ct scan. My er doc said it came back normal. I literally thought I was having a stroke. They gave me a migraine cocktail, and that didnt even touch the pain. I told my husband that I still feel something is wrong. I found a great nureosurgeon, showed him my scans, and he said immediately I had IIH and that caused chiari malformation. When he did a spinal tap. My pressure was reading at 46. 50 can cause brain damage and blindness. I got there just in time. It's sad that more doctors aren't familiar with IIH. How are you now?
I have had the droopy eye, ringing whooshing in my ears nearly constantly, memory problems, brain fog, dizziness, vertigo with panic but really it was iih. I wondered where the people with my symptoms were. Exhaustion, pain behind the eye and it feels like my eyes could pop out, double vision, blurred vision. I am not overweight and Im lucky I was diagnosed quickly in the er. You are the only person that described me. All the research videos i have watched on you tube ignore most of these symptoms. They need to update things to help more people. Thank you so much for sharing your journey.
I suffer with migraines. And sometimes they get so bad where my migraines make me throw up. Sometimes my migraine make me feel like the room is spinning. Sometimes my migraine feel like pressure in my ears. And sometimes when I have migraines I take out my hearing aids so I don’t have to hear anything. I was diagnosed with migraines back in 2015 a year before I got my fourth guide dog.
I have had migraines for ten years now. Saw so many doctors, did so many exams. Weeks ago I learnt about IIH and everything resonated with me. I can't sleep horizontal because I'll wake up with a migraine during the night or in the morning and one of my nostrils usually gets stuffed. Sometimes the migraine goes away if I stand up, but other times it gets worse and worse until I throw up. I get incredible ear and skull pain when flying on a plane or if I go running. Once I almost fainted in the gym because I had to do leg curls with my head bent down. Unbelievable nausea hit, my vision went black, I felt a huge pressure on my head and I couldn't feel my legs. But I saw another neurologist today and he told me that I can't have IIH because my MRI is clean and I don't have eye damage AND I'm not obese. He even told me that I don't have migraines but head aches. So hey, I guess everything's fine and I've been making it all up for ten years.
I cannot WAIT to see that POTS care video! It sounds almost too good to be true. I would share my symptoms but I honestly don't know which one relates to which condition anymore and so I'd probably just confuse people. I have vestibular migraine and recently diagnosed with POTS and at last count the regular symptoms to list was around 14 so I don't know that I would be very helpful
Six years of this.....no diagnosis yet. IIH or a possible cfs leak was "suggested" by an orthopedic surgeon who never followed up and also another doctor, as well as my ex husband who is a doctor. The suggestions never went anywhere unfortunately. It's debilitating. I was told I had cluster headaches even though I didn't have any of the symptoms of that! Crazy! Six years ago I had a thunderclap headache with intense head pressure. For a moment I thought I was having a brain hemorrhage. Not having ever had this before I took some ibuprofen and it passed. Over the next few months I developed profound fatigue, extreme dizziness and vertigo (I could barely stand up in the shower and had to brace myself against a wall). I had a stiff neck all the time (I never had stiff necks before....ever, that I can remember....certainly not everyday). I had to quit driving because of the dizziness. The "headaches" became worse to a point where I thought my head would explode. I kept describing it as more of extreme pressure than a "headache". I would pace the floor for 10 hours at a time with it. Went to the ER twice where I was told I had a pinched nerve and was given an opiate for pain. I had pulsatile tinnitus, whooshing in my ears, balance issues and also lots of heart palpitations . I also felt like my spine itself was going to "explode". (I don't know if anyone else has had that experience!). My ex husband, who happens to be a physician told my daughter that my symptoms sounded like "spinal pressure". That's about all he would offer but over the last six years I keep going back to what he said and also an OS who said I could have a spinal fluid issue. Wrapping up, over the last six years I was sent to cardiologists, rheumatologists, neurologists.....just about everyone you can think of. The problem is, each specialist only concentrates on their part of the body instead of looking at the body as a whole....They don't seem to be able to look at the big picture in terms of ALL the symptoms and how they might actually be linked!!! It's so frustrating. I was given different pills and potions....again, only for the symptom or symptoms relating to a specific part of the body.......For example, I was given a heart med for the palpitations. I was given headache medicine for the headaches......It went on and on. My MRI was normal and I had no papilloedema......however, my insurance only pays for one visit a year so............there you go. If papilloedema comes and goes, that could be why. AND, many people have IIH with a normal MRI. My life or any semblance of a normal life stopped six years ago. I'm still trying to find someone who will actually listen. I'm going to see a new ENT next month..........I can only hope. Thanks for a great video, it gives me hope and encouragement. I'm so glad you're doing well!
I'm going through the exact same thing, although my headaches come and go, and I've been experiencing very diverse symptoms. Lately, certain parts of my face go numb, although I still feel pressure in my head and eyes. It's a torment. Sometimes, I feel like I'm going to die because of so much pain and weakness in my body. My vision has worsened; I have a lot of astigmatism and sensitivity to light. It's horrible; I can't stand the light at night. I just hope that some doctor gives you an answer, or I don't know, may God guide you through this illness. It's difficult to deal with so many things at once; it requires a lot of mental strength. My best wishes for you, and good luck with the new ENT.
Wow. I am so happy for you to finally get the right diagnosis! How amazing. I'd love to see a vid on exactly what treatment is for that. This is really exciting!
I also have IIH, I don’t do videos but my treatment was diamox at first just to save my eyes and hopefully help me with the pain. I am very fortunate to not be undiagnosed for very long after the onset of symptoms. I went to the er for my ear bleeding. I had sooooo many ear problems. After my treatment was unsuccessful with diamox I fought with all of me to manage it on my own. Sleeping upright, watching my vitamin a intake, trying to eat more healthy foods, limiting caffeine etc. I finally had too much. The pain is soooo excruciating. I also couldn’t focus, I was a 911 dispatcher so I definitely needed focus. I did resign while having treatment. The neuro wanted and tried to push a device called a lumboperitoneal shunt. I had been having to undergo constant lumbar punctures/spinal taps that I completely did research on this particular shunt and the failure rate was so high. I denied that shunt more times than I can count. I then traveled to Texas, I’m from Louisiana and Instantly they said you need a Ventriculoperitoneal shunt (VP shunt) placed in my brain. This all moved very quickly. I was diagnosed with this horrible condition on January 16,2015 and I had my first brain surgery April 15, 2015. I’ve since had more due to shunt failure. I’ve had 7 total brain surgeries and 18 spinal taps. Treatment looks different for everyone but they generally start with diamox a very powerful diuretic. Sometimes if lucky enough you can find a neurologist that will order spinal taps especially if vision is going quickly. Last resort a shunt. Basically a device that drains the fluid. For Jen, you may ask them to look into chiari malformation as well. They are sister conditions and sometimes in the iih world people have both. I do not but know several who do. I personally do not think iih is as rare as they say, I think dismissive doctors and lack of proper testing (spinal taps etc) are why it’s rare. Just my opinion which isn’t much lol I’m just a momma with iih but I can proudly say iih doesn’t have me. I don’t let it define me. No one knows by looking at me that I’ve endured and still do what I have. I no longer let this awful condition consume me. I’ve commented before but my iih brain doesn’t remember exactly when lol. Best of luck hun, and always know you are not alone!
My story is so shockingly similar to yours. Currently losing my vision while I wait for some sort of test on my optic nerves because they look “congested”. My Rheumatologist is the one who has brought up two things now that other doctors missed that are not within his own specialty.
I just love your video it's so rare to see others with the same condition as you. I was diagnosed with IIH about 6 years ago now and I would try to explain to doctors how I was feeling and they would just brush it off as a migraine as well and just tell me to take Ibuprofen. They always made me feel like I was crazy or something or even making it up. When I was finally diagnosed with it, it was personally too late for me I had lost so much vision I am now legally blind because of it and I also had to officially have a VP shunt put in to save what little vision I do have left. But the doctors I work with still act like it's nothing and basically I just need to stop acting like a baby. No one seems to understand the pain you feel especially during a flare-up. I also have POTS as well so I completely understand what you go through. I also have a few other conditions and it's extremely frustrating when your doctors just won't listen to you.
I'm so sorry this happened to you. So incredibly wrong. I have a video coming out tomorrow that talks more about POTS episode symptoms being brushed off as panic attacks, I hope you see it and love it and remember you're not alone, these symptoms are valid 💜
That is why it is important to seek out specialists. I was in a similar situation as you, but with a different condition. I blogged about it on my TH-cam channel. I can just say, people with migraines often have cardiac issues as well, and that was the case with me. Always be an advocate for yourself and push and push until you get answers! Never give up! I did not have cerebral issues, but another rare cardiac condition.
I also thought I had chronic migraines, that was at least what my doctor told me, but then I got a new doctor, and he said it was just tension in my neck. So I found out that I have a skewed neck and back, and now I am hopefully on the right course! Thanks to years and years of doctors telling me to take different kinds of meds, when it was just a chiropractor I needed! And I am so so happy for you!!
I'd go see an Orthopaedic Surgeon if I were you. A Spinal Specialist to be specific. Chiropractors have limited knowledge and "adjustments" may not be the best thing for you.
I came across your channel when researching elimination communication and I noticed you have memory problems as well as migranes. I could definitely relate and wondered if we had a similar condition. I checked out your channel and found this and was very surprised. When you mentioned POTS, the neurological symptoms and hypermobility, I was shocked because this sounds EXACTLY like me. Thank you so much for recommending this doctor. I hope that I'll be able video call her and get treatment that will improve my quality of life. I would also like to add that I am very happy for you that you finally found answers to explain your condition and found a doctor you can get proper treatment from. I'm really happy for you. Seeing you tear up in the end made me happy/emotional because I understand how things can get. My situation isn't as bad as your's, but I can only imagine what it must have been like to live through that. I'm really glad that things got better. And thank you so much for trying to help others and sharing this valuable information ☺️
This is amazing. From Texas I am desperate to speak with you. I’m new to your page. Lost my husband and have a 5 year old little Miracle. For 15 years I have been misdiagnosed beyond anything imaginable. 14 surgeries including a pacemaker. Nobody could find anything “accurate” but a million diagnosis that now do not exist in my blood work. My primaries daughter passed away when I woke up from my last surgery and she was literally my rock. Us both having POTS. So do you have Pseudotumor Cerebri or it is false! I was in the ER about a week ago with the usual- horrible Pain feeling like I am going to black out or stroke out etc. kidneys and heart had great appointments that day. Did a spinal tap and pressure was 38 on my spine and brain and got it down to 13 by draining 22ml of fluid where I was immediate sent to the neurologist and so incredibly thankful. And scheduled for a brain shunt as I couldn’t tolerate the medication and fluid came back on immediately. Would love to hear more from you and definitely would love to somehow (a miracle) talk with this doctor before this brain shunt goes in next week- knowing I am doing the right thing. 2 people in my family have had to go this route but nobody has lived the 15 years of pure desperation and illness like I have up to now. Nobody around me mentions POTS anymore so I am so hesitant and just have so many questions. And want to know before brain surgery and a 5 year old that I am doing the right thing. Luckily the surgeon went out of town for a week so possibly that bought me time to talk with you an maybe this doctor. Since she passed away POTS is just kind of not mentioned. I am the lost difficult patient with now having answers. But nothing is being done for POTS....our stories sound identical times a million. Would desperately love to talk more. As a new Momma....you can only imagine the thought with a baby girl laying here asleep- just she and I and me needing to know that this brain shunt is the right move. I went from excited and thankful to omg the POTS and is it the right move with POTS, etc. thank you for sharing and hope to talk soon. Kelsi Freeman Abilene Tx (325)200-9377 Or on FB because I rarely check an email! You get that!!!!
The ear and throat pain! OMG. I am just now in the process of being diagnosed with IIH. Yesterday I had my Lumbar Puncture. Since the procedure, I have felt the best I've ever felt in YEARS! My ear pain, throat pain, running nose and eyes, my neck and shoulder pain, exhaustion, brain zaps gone! My vision auras gone! My constant feelings of nausea and dizziness, gone. For YEARS I've been told my problem was allergies, hormones, and anxiety/Today is probably the first full day I've felt 'normal' in probably 10 years.
I don't know what I have but I don't think it's either migraine or IIH but I have been having issues with my health. Around 6 years ago I suddenly got period cramping and nearly passed out in Phys. Ed. It was like I could hear everything and I was aware of what was going on around me, but my vision slowly faded until I could not see at all. I was weak and the teacher took one look at me before sending me to the nurse. It happened repeatedly and was diagnosed with POTS. But I never fainted to do any movement or standing. It was only associated with my period. In my first year of college, my symptoms changed. I fainted completely in the bathroom the week of finals. I completely lost consciousness as I fell. Talk about stress. I had brain fog and did not act as rationally as I did during past episodes. The doctor at the hospital diagnosed me with syncope (literally just means fainting) and sent me home with WebMD's syncope page printed out and a bill. My primary care doctor literally did the same thing. All the while I started taking birth control which stopped my fainting due to my period but since then I've fainted at work, nearly on the stares, at home, and so on. I was scared when I had no roommate because if I fainted in my room no one would know. All I know was maybe it was caused by abdominal pain. Recently, I fainted in the bathroom. Again. No one helped me so I had to lean against the wall to get to my room to tell my roommate to get help. I cut my eyelid and had to go to the same hospital. I can't thank that doctor enough. Despite literally having no beds and every other patient in the emergency room having covid he gave me as much time as possible. Turns out I may have a heart condition or vasovagal syncope triggered by allergies (someone was smoking marijuana in my dorm) and two more medications to add to my growing list. You'd think I was 40 or something.
Thank you! Thank you, thank you, thank you! I just had an appointment with an ENT who said the pain is just migraines and they have changed due to my age then dismissed me. Because of you I know that I don’t have to settle for having no diagnosis, constant daily pain, confusion, ringing ears etc. I am searching for a doctor who cares, I might try your’s, but at the very least I am not going to give up. You found the answer and I know I can too. Thank you Jen! PS. I hope you had a great thanksgiving!
I wanted to drop in and tell you to keep going and keep searching for your right diagnosis. I could only imagine how hard that must be! But I’m sending you prayer for strength, and answers! Best to you! 🙏🏻♥️
I had to lose my eye sight for them to figure I had psuedotumer!!!! Thank God it came back when the optic nerve went down! If your struggling with headaches please have a optomologist look at the optic nerve! It’s literally going to be inflamed from fluid build up. I also wanted to mention. I had a md tell me ppl with iih have a empty space on the skull that can be seen on an mri image. He told me it doesn’t cause symptoms of any sort but it’s frequently seen in ppl suffering from iih. If you have questions I’ll dig my records up and give you. More info…
I had headaches Dizziness Swooshing in the ear Saw spots Neck and shoulder pain Blurry loss of peripheral vision intermittent in the beginning Issues with standing and sitting Persistent Pressure headaches Nausea It’s cray bc this is treatable and easily diagnosed with eye test (dilated) or measuring pressure while sitting up. Ive had several spinal procedures over the years to measure spinal fluid. During the last one. I had to instruct the md to sit me up while measuring bc that’s how it always been done AND it’s they only way to adequately (-) measure (-) pressure! These doctors literally know nothing for sure!!! I’m here for anyone needing support or has questions about my ex with treatment and diagnosis of iih. I was diagnosed about 1 year after my 1st headache. That was 17 years ago. I believe most symptoms cease for woman while pregnant which is awesome!!! Hang in there and congratulations!!!
@@MommingwithMigraine it’s called. expanded and empty sella with dialated csf spaces. Wish I could attach a picture. If you google search the image you can literally see an empty space on the area of an mri. Freaky!
Thank u so much for sharing those subtle details that pointed to iih. My dad had iih. I have what feels a lottt like iih…symptoms are bad but docs wont do a tap, so those subtle signs are important to know. Weather change destroys me, also head pressure and balance issues. But im not worse lying flat, no papilledema.
Just a heads up this is a bit long... I've been having worsening health since I was a teenager, though I don't really remember much before then. I have been diagnosed with chronic complex migraines, tourettes, and finally (after years of trying to understand what's wrong with me) fibromyalgia. I still have so many issues I don't feel are related to those issues, and have been really scared as I've lost more of my autonomy. I have pain everywhere, which is understandable with fibro, but I constantly feel pressure in my head to varying degrees and my neck is always ridiculously tense. All tests done come back normal so neurology said "stress" and sent me on my way. My vision has gotten worse, and my opthomologist can't detect anything abnormal from his tests either. I got new glasses but haven't been able to see clearly even with a more accurate prescription, and I can't go out at night without someone with me anymore because my night vision is just so full of static. The harder I try to focus on anything, day or night, the more pressure I feel behind my eyes until I get a migraine. I have to take claritin d every day if I don't want to have sinus pressure adding onto my allergies that pop up now and then. My ears are always popping, but often hurt even after they've released some amount of pressure. If that's not enough, I've also started fainting, which started with me blinking and not being able to open my eyes for a good 30 minutes before my body went floppy (I already have issues with temporary paralysis of limbs, worsened by and sometimes caused by overexertion). Since that day several months ago I regularly have fainting episodes and am no closer to getting a diagnosis on what could be causing it. I am so thankful to have a new rheumatologist who is willing to work with me without making me feel insane, but really hope I can learn what other issues I have that need to be treated so I can work again (was force "resigned" from last job and have had no income since mid January 2021... it's now almost December). I've been crying trying to get through my brain fog long enough to do anything meaningful to get aide, but as I'm sure a lot of you know, that's sometimes impossible. I'm likely getting ready to move as my boyfriend has a new job opportunity, and worry about losing my new dr. I do have hope though, that I'll be able to find new answers wherever I end up. Sorry for the long text, I appreciate those who have read through it all.
I am sorry for what you are going through. I've had two years of going to eye doctors because of blurry vision. They said I had dry eyes, but also told me I should be able to see because there was nothing else wrong with me. Basically told me to stop overreacting. After a long time advocating for myself I got an appointment with an orthoptist: a specialist for eye muscles. She tested my eyes and said that everything was normal, but also gave me a prescription for new glasses and explained to me that for some people it can take several years (!) for eyes to really get used to a new prescription. She told me to get glasses that had a prescription in between my old glasses and the actual measurements. I can see slightly better now with those glasses and will keep them for 6 months before graduating to my actual prescription. I am not saying that you have the same thing, just wanted to share that there is hope for everyone, even when it doesn't always feel like it.
Congratulations on your pregnancy! That's nice your little girl will have a sibling so close in age. I'm happy that you finally got the correct diagnosis. Sometimes just knowing/understanding what's going on can take a huge weight off by alleviating the stress and frustration you feel when you know that you aren't getting proper care. I had a similar experience some years ago when I was dealing with back pain, so I can empathize. Now you have so much more to look forward to and hopefully, you can look forward to a life with less pain.
I had the whooshing in my ears, ringing in my ears, headaches, nausea and fullness in my left ear. My left ear is my biggest complaint. Luckily I went to an ENT who figured out what was going on quickly and referred me to another ENT who figured out I had a CSF leak due to IIH. I had brain surgery to repair it and felt good for a few months. Now it’s possible I have another leak. Very frustrating.
Diagnosed with migraine. Had an MRI recently. They did find lesions on my brain. Neurologist thinks it's from migraines but they are going to scan further to test for Multiple Sclerosis. Symptoms: Tunnel vision, sparkly, blurry peripheral vision. Numbness in hands and face. "Migraine babble" pure confusion. Inability to read or speak properly. Can't get my thoughts out right! So strange. Chronically dizzy. Especially when shopping. Tight isles, lots of stimulus, florescent lights? No idea why this specifically makes me dizzy. For 10 years it's been "just migraine' I'm advocating further now, hence the recent MRI. Partly thanks to finding your videos. I am so happy you are happy and are receiving some much needed care. ❤️
I’ve had rem sleep stage tachycardia (only) for several years. Recently my vision is worsening with double vision and occasional stars. For 23 days both arms have been numb to varying degrees and I now suffer hemiplegic migraine symptoms directly after each tachycardia episode. MRI shows no new stroke, I’ve suffered 2. 23 days of ringing ears. I have migraines and headaches chronically but lately these symptoms don’t seem migrainous. History of migraine and anxiety has doctors hyper focused that these are the cause. Issues improve when vertical and worsen when horizontal. So many similar symptoms to what’s expressed in this video. Will be discussing this with a neurologist on Tuesday. Also, a weird symptom - I get worse when I leave my house and go outside into big spaces. I’m NOT agoraphobic. But if I go outside too long I get extremely exhausted and am worn out that night. It’s strange.
It's so bittersweet to hear you relate 😪 hugs!! POTS Care is awesome. It's been years & I still use the info & supps I learned from Dr D on the daily 👏
Thank you so much for sharing this this is such a helpful comprehensive video. POTScare has been on my radar for a while so it's really nice to actually hear somebodys experience with it
So glad you feel that way!!!! I discovered POTS Care at the beginning of 2020 and didn't sign up until July or August of 2021. I completely understand your hesitation 😬 Hopefully the info I come out with over the next couple of weeks/months will help you decide whether they could be the right team for you!
Oh man, don't feel bad about crying because dammit I'm crying and this isn't even about me. Just... the hope in your voice and in your eyes. The excitement. The sense of possibility. You've always maintained a certain amount of positivity, but it was always... getting through it, making the best of it. It was positive but it was also... resigned, I guess. Now you can feel yourself healing, you can see the difference, you can believe in a better future, you can make plans and dream wild dreams and god it's beautiful.
It’s really validating to watch this video and walk thru the experience with someone else. I have struggled with migraine and IIH since childhood, but I never had diagnosis. 2 years ago I developed a cranial CSF leak. I am still working on getting my leak fixed because now I bounce between high and low pressure. I relate to every symptom of yours except the dizziness and nausea. I had nausea when I was a teen, but it didn’t follow me into adulthood thankfully. The only med that helped was topamax, but it doesn’t help now that I have high and low pressure, now I get to chase my symptoms everyday. I see Dr. Hepworth in Denver next month. He is an otolaryngologist that specializes in cranial CSF leaks. Hopefully he will help me address the cause of my leak (IIH) as well. I am also an EDS zebra with “friends”. Thanks for the video and I hope you still doing better!
Your channel has helped me a lot with my migraines, which had been getting worse since I turned 20! I have better ways to describe my triggers and auras, I’ve actually identified some that I didn’t realize I was having, taking ginger has been super effective for my migraines too! I feel like I understand them better and im more in control of them as opposed to them controlling and annoying me anymore. I’ve been here watching your diagnosis journey and I couldn’t be more excited for you. This was one big leap forward… hope you still have time to go back and tell off all the doctors that disregarded your case. (And omg the tummy jiggle from your baby 🤗💕 so cute.)
I don't know if you'll see this or not but I'm now just finding your channel which sucks because I was diagnosed with iih in 2016 I have gone through so much with this invisible disease I finally do not have it after having a vp shunt inserted and loosing over half my body weight which is not your problem for your case but I was very obsessed after having my vp shunt I got My life under control :) best of luck in your health battles
I was sent to my neurologist after my ophthalmologist appt and him seeing the “dip” in my right eye and his concern for my optical nerves. I now have to go get a spinal tap to measure the fluid but listening to you I’m 100% sure I have this. I’ve loss some of my vision, ringing in my ears, the seizures, the random fluid leaking from my ears & nose, the headaches, nausea, dizziness, memory issues, pain in my eyes… I also just told my daughter today that I don’t get sleep I have to “tired myself out” so I can sleep because when I lay I feel the pressure mainly in my right eye. I thought I was going crazy! I’m in tears just listening to you and finally feeling like I know what the hell is going on. I’m a 3X college graduate and I’ve been struggling to study so I can test, I finished over a yr ago now!
Hey there! I came across your comments and I 100% believe I am going through the same thing. Do you mind if we chat? Or you can reach out to me? I’m literally going through hell because no one knows what I am going through with my symptoms
@@AlexisDifazio Hi, I don't mind. It's a very awful disorder I dealt with it for yrs because no one could pick-up what it was until that appt, so I suffered for yrs. How do you want me to contact you?
@@MommingwithMigraine pretty much: age 4 was my first seizure, and I was treated for epilepsy for the next decades, each neurologist exploring more treatments, but not ONCE did they consider it was *actually* vasovagal syncope and not epilepsy. They ignored ALL the symptoms that were not a fit for epilepsy. It was a paramedic who (a few years’ ago) just casually said, “oh… sounds like POTS…” I googled it and broke down crying because ALL the pieces FINALLY made sense (you know this feeling!). Not a cure, but instead of arbitrary “breakthrough seizures”, I can now manage triggers. I lose consciousness far far far less now that I’m not on seizure meds 🙄. Finally having something that fits is soooooooo huge. Once they got “seizure” in their minds, 10 different neurologists were unable to “see” or hear anything else.
@@KathySierraVideo Hey hun.. It sounds like you got some answers - which is nice! I’m so sorry you had to deal with your symptoms for far to long. Sending loving and healing vibes your way! I hope you can get some more relief. And answers across the board. Best to you 🙏🏻❤️
My symptoms I took on my phone in roughly the order I started having: Symptoms -fatigue, brain fog -Wooshing in ear (right) (started just sometimes at night, increased to constantly) -Headache (eyes/eyebrow, head band, back at base and temple -Neck pain and stiffness -sensitivity to light and sound -irritability -Difficulty focusing/loose train of thought when talking -Dizziness when heart rate goes up or fast position changes -fullness feeling in ears -Occasional floaters in my left peripheral vision -Pain between shoulder blades and upper back and left arm/arm pit -Whistle in ear (right) (occasion wooshing continues) -Sudden tunnel vision with the feeling of everything thing being far away but at the same time feeling pressed in on all sides. Always accompanied by muffled sounds and loud wooshing in ears. Usually cause after rushing or running a short distance, getting heart rate up. -Double vision (for the last few days before meds started work it was triple vision) Nausea (like mild seasickness) - when I close my eyes in a dark room I see flashes of white light. Turned into large light floaters when eyes closed in a dark room. All symptoms worsen if change in position, especially bending over, or when doing activity that increases heart rate
Congratulations on the happiest I’ve ever seen you Jen. I don’t think I have what you have but it’s been almost 15 years since the lightning down my face and off we’ll find out what’s wrong the way you finally have
Hi. Thank you for this blessed video. I have had migraines since childhood, but lately I have had headaches all day, aura of numbness in my hands and arms that migraine medicine doesn't touch. This all started with whooshing in my ears. Also, sinus pain. Now I have lost peripheral vision and had a big floater come loose in my left eye leaving a lightning type zig zag in my vision. I have had two eye doctors examine me and there is "nothing wrong" with my retina etc. Once I lost sight in that eye briefly. My neck is stiff and sore. I have muscle pain and stiff joints. I also "forget" to breathe when I sleep and wake up breathless and anxious. I suffer from depression and anxiety. I have had tests for sleep apnea but they always say I am fine. I am supposed to have an MRI but not for 12 more days. I am afraid that they will say I am fine too, but I am not fine. Thank you again for sharing your wisdom and resources.
Full circle moment for me watching this. Years ago I watched your videos about your guide dog. I was healthy back then. Now I'm 24 and since December have been dealing with debilitating headaches that are constant, day in day out, and I have a lot of the symptoms you mention here. My doctor keeps sending me away with silly things that I know won't help at all. I randomly saw someone mention IIH on another video and looked it up. My jaw dropped at how similar the symptoms description was to what I'm experiencing. Was looking for a video where someone explains their symptoms and here we are.
Oh my goodness... welcome back. I'm so sorry about your symptoms!! I have a high pressure vs low pressure symptoms video you may be interested in looking at if you haven't already!
@@MommingwithMigraine thank you!!! I wrestled my family doctor into referring me. I needed my sister's help because I was getting dismissed (it's just stress/I made it up) so hopefully I'll get some answers soon. I'll check that out! Thank you and I wish all the best to you on your journey ❤️
Thank you so much!!!! I’m so tired of these neurologists ignoring me! I had cerebral spinal fluid dripping out of my nose. They said it was allergies!! It was clear and on a piece of soft pillow cloth. It never got hard even after a month!!! They didn’t care!!!
YES with the ear bombs oh now validating . Jen I can’t thank you enough for all you do . Seriously, where docs hadn’t figured it out , I can turn to you for relief I’m so thankful 🥹 they told me to do the allergy meds too, but I said this isn’t allergy , this is way more complex . I’m going to see a neuro ophthalmologist but they’re booked until June . I’m going to try to get in sooner .
I finally got my diagnosis mid December, and met with a neurosurgeon and have surgery in just a couple weeks! Glad to see your finding answers too and working on feeling better! I have chiari malformation with a connective tissue disorder. I have always had issues but wask ok enough until I got suuuper sick during my second pregnancy 2020 and they kept telling me it was anxiety causing my tachycardia and other issues. I kept telling them something was wrong with my headaches and stuff, and now I do have lasting nerve damage because of the doctors who laughed me off too 😩 I had a ER PA straight tell me he didn't believe I had a bad headache. I'm thankful for the very few medical professionals who did their best to help me otherwise I wouldn't of made it this long that's for sure. Took me 2 years from my most severe symptoms to find an answer, one Dr had the answer and didn't tell me because he didn't believe it could cause the issues 😩 Here's to hoping for a better new year and better incoming medical professionals and just a better everything 💕
Thank you SO much for sharing your journey. I can’t describe how helpful and encouraging your videos have been. I feel like you’ve seriously been saving my sanity. So in full honesty, I’m skeptical about the POTS Care Clinic. I checked out their website, and it looks like the cost for two months of care is over $9,000 and isn’t covered or reimbursable by insurance. 😬 I tend to be skeptical of doctors that have branched out to their clinics and claim to be different from all the rest too. Please be careful, gal! All that said, I hope that POTS Care is legit, and that you are able to find real relief and management for your symptoms. ❤️ I was diagnosed with POTS, migraines, which are often accompanied by tics; swallowing issues with silent aspiration, retina problems, two unprovoked DVT’s, Raynaud’s, and TMJ issues, and I have joint pain and other odd symptoms that have never been pinpointed. I’ve been searching for answers for 5 years (going on 20 if we count my younger years when thing were less chaotic). I recently found out that my family has a slew of symptoms that their doctors have suggested could be a connective tissue disorder such as EDS. I have an appt with a geneticist to find out if this could be the reason for the insane amount of issues the past five years. I had an appt with an ENT last week because of several ear symptoms, including a feeling of fluid in my ears. I also get crazy neck stiffness and headaches in the back of my head and eyes. It’s a big relief when I lay down. Exercise and other things like potholes while driving, speed bumps, etc., make it much worse. I outright mentioned that I am concerned about a potential CSF leak because of my medical history and my family’s medical history to my neurologist and ENT, but my MRI of the brain and ears came back normal and they seem to think I need a bucket of fluid draining from my nose to pursue a CSF leak diagnosis. They suggested that I have Eustachian Tube Dysfunction and prescribed an antihistamine nasal spray. The ENT said to give the nasal spray a week to work, and if it doesn’t, we would move forward from there. I’m convinced that if the nasal spray does nothing, I still need to pursue a CSF leak specialist. Your videos have given me hope and the knowledge that I need to keep going and to pursue answers. Thank you!
Sounds you like you're doing great, I'm delighted - the difference in you is just massive, I haven't seen many of you're recent videos, you seem a new person. Maybe in 6-12 months after the new baby, when the dust has settled, the TH-cam channel name will become defunct and it will be around patient advocacy or something like that. Best of luck, but sounds like getting good care. I hope your progress continues.
I'm certainly not 100% but on good days I definitely feel like a new person! Thank you!! Here's hoping my youtube name can change to... hmm.... maybe something with "remission" in it 😋
I'm so glad you found this clinic and got so much more information and help. Thank you for sharing because I'll definitely be looking into them and keeping them in mind.
Fluid leaking from my nose, brain fog, HORRIBLE insomnia (pulsile whooshing in my ears), tinnitus, and my severe pelvic floor issues and straining to go to the bathroom making my positional nasal leaking WAY worse. No migranes, sometimes some slight head pain on the right side, neck pain, POTS (most of my whole life).
Oof, I am so torn on this video. On hand hand, I have been cheering for you for quite some time especially since I started to suspect IIH (much worse than mine), and I am really glad to see you finding some relief. On the other hand, this center sets off major red flags (e.g. is an optometrist rally seeing patients for medical consultations and directing care?). It's a situation where it is all too easy to prey on people who are desperate for someone to just listen to what they are saying about their own bodies. I get that people without actual medical training can teach themselves a lot, and the actual medical care options are limited, but these kinds of results sound too good to be true. I hope you have dug or will dig deeper before giving them more of a platform.
The proof is in the pudding 🙌 I was seen by probably 40 neurologists, neurosurgeons, optomestrists, neuro-ophthalmologists, ENT's, cardiologists, etc etc at top research institutes and not only did they gaslight me and miss my diagnosis, their advice and piles of pills only made me sicker. Most of them were no help because they saw my rapid heart as anxiety, they are not up-to-date on the latest CSF-related research, and for the most part they've never heard of POTS or EDS... certainly can't connect the dots between them. If a particular degree is really what you're looking for, I was seen by an MD during my appointments at POTS Care too... but in my humble opinion, the simple presence of a degree is no good if it doesn't help the patient, so there's no need to feel torn just because you don't think her credentials are sufficient. She's dedicated her life and career to research since... something like 2004? so she's ahead of the curve. Most importantly... you're right. I was desperate. And with Dr. Driscoll, I was heard and got diagnosed!!! It's actually quite common for optometrists to be the ones to pick up on IIH. I am supported now, I have been educated on my conditions and feel empowered by the great progress my body has made with Dr. Driscoll's science-backed methods.
Very true. It’s important to note that POTS Care doesn’t accept insurance and their cost of care is much more than many people can afford. I was able to get an intracranial hypertension diagnosis through the traditional medical system, and while I agree it’s frustrating it really sounds like Dr. Driscoll tries to fit every patient into her own very specific experience of diagnosis, which also leads some people down the wrong path and is no better than other doctors frankly.
Jen so happy!!!!!! I cried❤️ I have migraines and the symptoms are not like yours. And I confirm migraine aura is not just when you lie down. And I have never heard of quite the rainbow you described being related to migraine.
Thank you so much for sharing your story with us. I recently got diagnosed with vestibular migraine and pots after being out of work for almost two years suffering. I have almost identical symptoms as you and have been following your story. None of my doctors seem to fully understand the picture and I have a very hard time telling if I am having vestibular migraine or pots symptoms. I recently noticed that I constantly feel very stuffed up and full especially around my nose and eyes and almost always have ringing in my ears. My symptoms are worse with temperature changes, pressure changes and awful during any kind of movement or change in position. I also got pseudo seizures when I tried topiramate. I think I want to look into further diagnoses because I fear that my doctors may not have the full picture still. You have been such an inspiration to me and I don't feel as alone because of your videos so thank you so much!
What a huge relief!❣️ I’m so thankful for you getting the help finally that you’ve deserved for sooooo very long!♥️🥰🙏🏼 I’m going through something medical that I could never even have the courage to share on TH-cam as I don’t think anybody would believe me. It’s unreal, but I know it happened as my husband was at 2/7 appts and they were 2 of the worst 5. I feel so alone and my life is slipping away as I can’t move, don’t have family or money to go elsewhere and nobody here seems to care and in addition they seem to want to make me feel as lifeless as they can and as hopeless as possible. It’s gotten to the point over the past 11 months that my life is ending and I don’t know what to do anymore. I don’t have the right to go to a different dr/clinic as it’s the only one. Anyhow enough about me. I can’t believe you’re 32 weeks+ already!! You are so smart and so beautiful and I bet you are a wonderful mother and wife and it sounds like you have an incredible husband and again I am SO very thankful you’ve got the support you have including this dr with a ♥️. Xoxo, Kimberly.
Your previous video on IIH has me wondering about myself to the point that I'm planning on bringing it up to my doctor to possibly check me for it. I've had migraines since I was a little kid. I wasn't diagnosed until my 20's though. I always have the pressure feeling during my attacks. A lot of times it feels like my head is going to both explode & implode. I get an increased pressure feeling in my ears when I bend over, lie down, or get up. I always have pressure behind and/or around my eyes when I have an attack. My nose stuffs up before and during an attack, but also runs sometimes. My neck & the back of my head always stiffen up during an attack. When my attacks are bad, I have minor balance issues, but I have fallen more over the past year than before though. So it seems that is getting worse. But, for years when I wake up to go to the bathroom overnight I litterally "bounce" from wall to wall in order to keep my balance. If someone that didn't know me saw me do that, they would swear I was drunk. Back to the ears, I almost always hear some level of ringing in my ears. It's rare that I don't hear at least a faint ringing. When it comes to auras, mine aren't what people usually describe. Before a migraine attack, if it's going to be a bad one, I will get random electrical shock sensations from the arch of my foot (either one) going upward in to my knee. Sometimes up as high as my mid-thigh. I will also get them in my thumbs going towards my wrists. My visual auras look like moving fish nets with dots where the strings cross. I used to get flashing black & white lines along the outer edges/corners of my eyes, they looked a lot like hazard lines. My eyes & nose usually get runny right before & during the beginning of an attack. That usually stops around the mid point of the attack. My attacks seem to always be brought on by weather changes. I actually started following your channel, because you have a lot of the same symptoms that I have. I love how informative you are and also how you stress that everyone has different experiences when it comes to migraine. So many people think that they are educated about migraine, because they know their own experience like the back of their hand. As we all should. But, for so many that's where their education stops and they feel that is the only way to "have" & experience the disorder/disease. So many also don't realize just how many different types of migraine there are, and that some of them are actually painless. Plus, not to mention, all of the other conditions that migraine are linked to. Whether they are migraine caused, or migraine is a "symptom" of. It's not always a condition that is stand alone by itself. I know this comment is long, but I thank you for creating your channel. You have taught me some new information, that I didn't previously know, to add to the knowledge on migraine that I already had, & you are making me take another look at my own diagnoses (3 types of migraine over the years) and I am questionable enough to bring it up at my next appointment. Thank you!
Hey girl. I seen your comment and wanted to send some love and prayers that you find your true diagnosis. I bet it’s hard going through all of that and not having the correct treatment! Best to you and I’m sending loving vibes your way! I hope you get this figured out 🙏🏻 ♥️
@@chrissy.saturday Thanks! If this happens to be my true diagnosis it will explain soooo much of my life! After I saw Jen's first video about it I went & had a conversation with my hubby about it. He also thinks that we should look in to it & agrees that it would explain a lot of my symptoms.
This video just further confirms more of my symptoms and my thoughts of having IHH as well. I don't have the severity like you, but I have noticed, also my husband, has noticed the rapid decline in mental capabilities in the last 3 or 4 years. My vision is more and more distorted and memory is affected, cognition is affection. Luckily right now a good few moments that I can type this before my migraine takes more control of my day. I find as the day progresses on, I lose my ability to think clearly, to put thought to words correctly, to even concentrate on a simple task escapes me. Typically I have to ask my husband what I'm thinking, by giving him clues. It almost becomes a game, and sometimes it's annoying, but I'm trying to keep it as light hearted as possible. Some days hit hard, and I break down. I get so dizzy sometimes, I can't look at anything, I can't move. I cannot be in a quiet space, as the ear pressure from the silence is painful, so I must have something on , even if quietly. I cannot handle scents as they instantly trigger me into a most ferocious knife stabbing you could ever imagine. I have extreme difficulty getting to sleep due to the ear pressure, the eyes, the head... all of it. I'm just sick and tired of doctors ignoring everything and saying take this pill and leave. NO, listen to me and investigate! Help me be healthy!
It's infuriating that the doctors are ignoring your worsening symptoms. It's not right 😡 I have the same situation where over the day I'm just worse and worse. Hubs and I do the same... just try to make the most of it. Try to enjoy the little things. You might enjoy the Migraine Jen Playlist. It may help you feel less alone when your brain is running at 10% 💜
@@MommingwithMigraine I have actually sat back and had conversations with her!!! Ya, I did that, lol. Think it's a bit tacky? Maybe. BUT it is helpful, and feel less lonely to talk with you both. I answer your questions and reactions by describing if it's like how I feel. Almost like a Zoom meeting with you.💜 Did you capture a picture of yours and Buddy's footprint art in the snowy backyard???? I commented on your IG story ;) arreismors is me
You're literally describing me 😭 I've had a headache for about 12years, migraines, authostatic intolerance, hsd, spots when I cough, dizzy when I cough, migraine triggered by coughing, etc etc
I just found your feed today after ordering the Weather X earplugs and looking for reviews online. I have had debilitating migraines for about 2 years being 5 years out of chemotherapy for breast cancer. My first symptom was pulsating tinnitus after chemotherapy but now have a bunch of mixed up symptoms including barometric pressure migraines, vomiting with migraines, migraines worsening with coughing/movement, cranial pain/sensitivity, cervical spine pain and cracking daily, dizziness when standing up, anxiety, depression, inability to focus, TMJ, eye pain are some of the symptoms I can think of at the moment. I have had different diagnostic imaging on my neck and head with nothing showing up. Over the counter medication doesn’t work anymore and my doctor recommended migraine medication and tracking them with a journal which I do. Looking to avoid medication if at all possible, which is why I’ve purchased the ear plugs. Thank you for your videos!
I have been diagnosed with IIH 1.5 years ago. I get pulsation tinnitus, head rushes, anxiety , heart palpitations. Sometimes headaches. I just had my vision checked and no papilademia. Now I have been getting Pots symptoms. Head rushes fast heartbeat on standing and light headedness. I was diagnosed on MRI. Thank you for this video. What have you been instructed to do in regards to medication?
Wow, this is coincidental. I have written you before a while back and talked about my son who has POTS and seizures and how he has no life. Been treated badly by many dr.'s and frustrated the good ones because I won't give up - whatever that means. Anyhow, about a month ago I happened upon a British cardiologist who became very interested in POTS, as he had a lot of dysautonomia patients. He so wanted to help them and he experimented with a drug called Mestinon ( it has another very big name, but I can remember this one.) with many of his POTS patients and found it really helped reduce many symptoms. He really understands the stress these people live with, which was refreshing as I have never met a dr that truly seems to understand my son's symptoms are related to this fountain of stress gurgling within his poor body. This dr explains the imbalance between the sympathetic and parasympathetic ( flight and fight vs rest and digest) common to people with POTS and many patients get some relief with using drugs that inhibit the sympathetic response. He got this idea from someone else and said so, but why shouldn't we also use a drug to increase the rest and digest to go at balance from both directions? He further explained the importance of acetylcholine in the rest and digest response and how Mestinon inhibits the breakdown of acetylcholine. Many things could cause one to not have enough of this neurotransmitter. So, while waiting for our cardiologist to respond to my request for his opinion I looked up natural ways to prevent the breakdown of acetylecholine and found Dr. Driscoll. I had seen her before, but at that time I think one had to go to her clinic. Or I felt his case was too complex to not go there, but we just were not sure about it enough to try to come up with the money to go there. So, I saw the Parasym Plus literally the day before I saw this video and it purports to do what I wanted the drug to do. It will be here tomorrow. I just hope he can tolerate it. So, when I was listening to you I had a feeling it was Dr. Driscoll you consulted, but was still surprised when you said so. I was so excited to see, though, her teaching the importance of preserving acetylecholine. I am so happy you found someone to hear you and understand your suffering and needs. Very exciting!!! I will let you know how the supplement trial goes.
Wow, insane timing! I'm actually taking parasym plus, it's really helping me!!!!!! Ive found it to be gentle to me, too. You can get 10% off with my discount code MOMMING 😘 I hope it helps him too! 🙏
They can't figure out what other tests to run for me. I've had total blindness upon standing for like 5 seconds it goes out gradually and then returns, flashing blind spots/stars without changing position, feel my pulse in my whole body and head as well as hear it when I lie down in bed especially when very tired, passing out and the pulsating starts at the base of my spine and travels up my body usually into the head--just injured my neck from passing out recently too 😢, eyes going wonky and not looking in the same direction, O2 sats tank, fasciculations, staring, difficulty feeling fully oxygenated from breaths (feels like smoke inhalation or like I'm in a steam room and struggling to get the oxygen because the air is too saturated with water), and coughing here and there. Also can't talk when my heart skips beats--like literally cannot produce sound with my vocal cords and will stop being able to speak mid-word when it skips until I feel the thump after the beat skips. I also have Alice in Wonderland Syndrome and have been getting increasingly forgetful, losing track of thoughts. When I am tired, I get so cold to the touch and my body physically cannot warm up without sleeping. I have coordination issues and I often tear out of one eye before really bad episodes. I have hypersomnia and can sleep day after day 19 hours a day unmedicated and am essentially comatose when I am asleep (even slept through a fire in my house and many fire alarms when there thankfully was no fire). I feel like my head is going to explode and I have nystagmus, especially from caloric testing and when I am tired during which it almost looks like I am seeing a spider when my eyes shake but it really is just a spot on the wall that looks like crawling because of the weird eye movements. I also have scoliosis and multidirectional instability of both shoulders and instability in most of my joints--7 out of 9 Beighton score and the only two missed are bilateral knees but all other non-tested joints are unstable. I also get ice pick headaches and have constant neck pain and jaw pain. Sometimes I genuinely think the chair I am sitting in is genuinely tipping over and I slap the desk to prevent my chair from fully falling over and would have no idea my chair was not tipping over at all when I do this if someone didn't tell me every single time that they were confused why I suddenly slapped the desk and that the chair wasn't tipping over at all. When the car kicks back at stop signs when you come to a full stop, I get dizzy. What we know: Seizures, other heart issues, dysautonomia, microsleep attacks, lung issues seen on pulmonary function tests all ruled out and had like 20 negative COVID-19 tests in the 2 months before symptoms even began (required for school) and then also for 4 months after twice a week all negative. Already diagnosed for years with vestibular migraine. Also have hypermobility. I didn't have papilledema. Hoping someone in your chronic illness community has thoughts. Saw neurologist, pulmonologist, electrophysiology, neurotologist, cardiologist, endocrinologist, gyn, and ophthalmologist.
Oh mannn girl! I don’t have answers, but I am sending loving prayers and vibes your way! I hope you get the help you so desperately need. I’m so sorry to hear this.. I couldn’t imagine how hard it must be. Heartbreaking. I hope someone reads this and recognizes some of your symptoms, or you get answers somehow. Best to you dear 🙏🏻♥️
Thank you so much! The first part with the passing out and the pulsating as well as the stars and flashing lights and blindness upon standing are what worry me the most, and those are the most new symptoms of the bunch listed. I think that this is probably multiple health issues which is why it is so hard to tease out which symptoms belong to what condition.
My daughter has EDS, Pots and friends...the worst is gastroparesis and migraines. I've been diagnosed with migraines after having mri to rule out MS because of fatigue, brain fog, dizziness and numbness in my face. I had spinal mri that came back with stenosis. Then started having bad headaches. My scalps so tender, I often can't put my head on a pillow or brush my hair. One night my head filled with pressure as I laid down, I felt my brain move downwards inside my head. It was so scary. I've seen neurologist and ent and all they are saying is "I really think it's migraine related". The top of my head feels like there's something resting heavy on it. I have a constant muffle sound in my ear, I hear the whooshing of fluid in my head, and my ears pop all day long from pressure. My ent did a sinus ct showing fluid buildup. She did a hearing test, I need hearing aids for some reason. So far, it's been six months of drs giving me migraine preventatives and tests they aren't doing anything about. My daughter has the same issues with drs all the time. It's so frustrating.
Your story sounds so familiar! 20 years suffering. I wish there was a way for me to get in with Dr. Driscoll! I have so much respect for her and her work. Unfortunately, insurance doesn’t cover the providers care that are experts in the area.
Hello, what treatment are you on? If currently treating. I just found this page. I was diagnosed about 17 years ago. I’d love to share my experiences if your interested.
So, my particular health issues are not migraine related and don't cause migraine. However, I do have a health issue that took WAY too long to be diagnosed, and in hindsight I'm more than a little pissed, because it could have killed me. Telling the story properly will be kinda long and ramble-y, though, so apologies in advance: So, it started with me getting 10 ear infections between when I turned 1 and when I turned 2. Then at age 4, I stopped growing. Like, completely stopped growing. I was also super tired. I never had that boundless energy to run around like most kids do. I wasn't super talkative. I was never prone to emotional outbursts. I just wanted to sleep or sit around playing quietly. This lasted 3 years of my parents taking me to doctors and being told I was fine, they just needed to feed me more. I didn't get diagnosed until I was 7. Three years of not growing at all, and getting increasingly lethargic and reserved. According to my mom, by 7, I was almost completely non-verbal. If you Google reasons a child would stop growing, the top things that come up are dwarfism, starvation/nutritional deficiency, growth hormone insufficiency, and hypothyroidism. We knew it wasn't any sort of dwarfism, because there's no history of that in our family, and I wasn't growing disproportionately, just...not growing. I wasn't skinny either in the way I would have been if I wasn't being fed properly, despite having very little apatite. The other two causes can be confirmed or ruled out with a simple blood test. So why did it take 3 whole years to figure out I had hypothyroidism? For context, little lesson about thyroid hormones/health. The thyroid controls energy levels, providing energy to the mitochondria in every cell of the body. TSH is what they test to check thyroid health. TSH - Thyroid Stimulating Hormone. It's released by the pituitary gland to tell your thyroid to make more thyroid hormones. The higher your TSH, the worse your thyroid function. I think of it as your body adding exclamation points to a message. At first it's mildly elevated, requesting politely. As time goes on and that request gets ignored, you produce more and more TSH as your body gets more and more desperate for the thyroid hormones it needs. If it continues to go without, your body doesn't have enough energy to keep you functioning, and slowly begins to shut down. Eventually your metabolism slows down so much your other organs can't function, and you can slip into a myxedema coma, which has a mortality rate (risk of dying) of 25-60%. Normal TSH for a healthy person is between 0.4-4.0, averaging between 0.5-2.0. The recorded cases of myxedema coma I've found that show TSH were a TSH of around 100. My TSH at diagnosis? 800+. Literally don't know how high it was exactly, because the lab stopped counting at 800, so all I know is it was higher than that. The doctor who diagnosed me with autoimmune hypothyroidism was amazed I was still alive and even semi-conscious, because the ear infections when I was 1 were likely the trigger of the attack on my thyroid. I was likely at risk for myxedema coma/crisis since I had stopped growing...three years...all because the doctors didn't think to check my TSH when I stopped growing. The fact that I lived through it at all is nothing shy of divine intervention/luck.
This is awesome to hear, in the way that you’re able to find out what’s REALLY happening! Amazing!!!! The frustration/ relief, is a very strange juxtaposition. What date did you find out your specific change in diagnosis?
I have so many similar symptoms. It took half a year to get my vestibular migraine diagnosis, but this really has me worried. Near the begining I had an eye exam that detected pressure behind my eye, and then had a normal scan so the worry of psudo tumor ceribri was put aside. Now I wonder if I should look into it more. My most common and severe symptoms are dizzyness, loosing depth perception, aching behind the eyes, blurry vision, tunnel vision, light sensitivity, and flashing and moving lights when I close my eyes (I refer to it as strobe lights). And I have what I've always been told is constant sinus drainage down the back of my throated.
I know this is from 3 months ago so I hope you have gotten a second opinion by now but IIH stands for Idiopathic Intercranial Hypertension. Idiopathic means the cause is unknown. If by scan you mean MRI, a normal scan is one of the things used to diagnose IIH. If something shows on the scan like a tumor or blood clot then the Intercranial hypertension has a known cause. Nothing on the scan meaning the cause is unknown (idiopathic). You need to get a new eye doctor.
I am SO happy for you! It’s about darn time you get some relief. For the record, I always believed you. As I’m sure most of us here did. I know we all wanted you to get to the bottom of this. Again, super happy for you! 🙏🏻 ♥️
Let me preface by saying I have not yet been diagnosed with pseudo tumor, however, my new eye doctor believes I could have it or have previously had it- after watching your video and doing some research, so do I. When I was 15 I was diagnosed with chronic migraines. It was so debilitating that I would have to be pulled out from school many times as it would lead to nausea and vomiting. I saw a neurologist for about a year and a half. In that time, I began to notice issues with my vision. So I saw an eye doctor and got glasses. We believed the migraines were caused my “eye strain” since the pain of my migraines usually resonated from behind my eyes. It wouldn’t be until I was in college when seeing a different eye doctor, she noticed something - one of my optic nerve heads was extremely swollen. I had to see an eye specialist and they concluded it was optic nerve Dusen. Really nothing came of that since at that time my migraines were minimal so there wasn’t much concern. Fast-forward a few years later at about 21 years old - I began to notice occasional headaches, a bit different from the migraines. I also noticed dizziness and later a whooshing/pulsating sound in my ears, which I brushed off as tinnitus. This eventually went away, or it was so sporadic that I didn’t think much of it. However, it came back last year. Once again, I ignored it - this time thinking it was more related to stress and anxiety since I had started a new job. Just recently at 25 I had to get my own health insurance thus getting a new eye doctor. I filled out the new patient paperwork, mentioning my history of chronic migraines and optic nerve drusen (I did not mention anything about previous symptoms of dizziness and tinnitus since I didn’t think that was somehow related to my vision). My exam showed that now it is not just one, but both of my optic nerve heads are pretty swollen. Right away my new eye doctor says “you may have a pseudo tumor” he procured about if I was experiencing any headaches recently to which I said no, and he suggested I look into pseudo tumor if those symptoms ever reappeared. Not once did I mention the dizziness or tinnitus to him… just based on history of migraines, and optic nerve swelling he put the pieces together. I feel like it all finally makes so much sense! I don’t know how or why my symptoms miraculously disappear and reappear. However, if the symptoms appear again, if we begin to discover worsening in my vision, we at least have a lead!!! Thank you for sharing your experience and I hope that treatments have aided in an improved quality of life for you!
It really boggles my mind that they have all of the specialists for different parts of the body,which is all connected, yet they don’t connect them medically in their training
I have hemiplegic migraines but also share a lot of symptoms with you and IIH. I had my MRI come back normal and feel very strongly that there is something more going on than my regular migraines as I’ve been on a steady decline with seizures now happening ( completely new symptom for me). Constant pressure in my head and neck and constant ringing in my ears too. Waiting on a referral to a different neurologist because the first one I saw was god awful and was dismissive and unwilling to even listen to a word I said because I look able bodied but have a service dog. Hopefully I will get some answers with the new neurologist.
You know what.. I was diagnosed migraine because of the episodic ones I'd had in the past. Once I was dizzy, they said vestibular migraine, then with paralysis they changed me to atypical, or some said hemiplegic (even though it was bilateral). With the seizure onset it changed to "complex" or "complicated." The other stuff never went away, I was just adding problems and declining and it was happening 24/7. With or without migraine attacks. Sounds just like you?!! Once I got POTS I knew there was definitely more than migraine, but this makes me wonder how many people are brushed off as migraine and actually have a mild or atypical presentation of something else 🤔 I am sincerely hoping you get some answers!!!
Hey hun. I seen you comment and I hope you get the treatment you deserve soon. Sounds rough what you’ve been though! Sending prayers and good vibes your way. Best to you 🙏🏻❤️
Im so so happy that you found a good dokter that takes you seriously.. I have episodic migraines that get trigger by hormones or sometimes stress...one day I was sitting on the couch and it felt like something snapped in my head and I got really seasick that stayed for weeks, where I couldn't even walk normally, i was pucking my brains out and my dokter didn't even want to see me, he just said, well that happens sometimes, look at the bright side, maybe you will losse some weight before summer..... I switched dokter the next day and luckily I found a good one pretty fast, who took me seriously and was willen to look for a way to treat my migraines so I can function normally..can't imagine what you been through..
I hope this symptom list helps you guys out! I think hearing exactly what my early symptoms were (in my words from back then!) has the potential to help a lot of people who are as confused as I was just a few months ago
😮 I’m so grateful for you
Yep. I was one of those people whose doctors who kept telling them it was just a migraine. Get over it. I lived with bedridden"migraines" since I was 13 until I was 38 and one day literally woke up blind. My husband called my neurologist and she said to take me to any eye doctor immediately. As soon as my eye doctor appointment was over my neurologist called us back and said go to the ER right now don't wait because a neurosurgeon was on stand-by waiting for my arrival and they finally knew what was wrong. Yep, it was IIH. My opening lumbar pressure was 55 and I had to have emergency shunt surgery. I regained some of my vision but I still have the brain fog, weakness, body pain, ringing in the ears, dizziness, nausea, speech issues at times, problems with finding the right words, correct spelling at times, severe headaches, numbness in my hands, and gastric issues. Also, their are many doctors including my neurologist who have are now disputing the connection between IIH and weight. In fact, it looks like I developed it at 13 when I was 110 lbs and didn't weight over 150 lbs until 6 years ago. It looks like mine was caused by a combination of medications I took when I was younger and a growth on my pituitary gland pressing on it blocking the fluid from draining properly.
I hope you are writing every single doctor who mis-diagnosed your condition. You need to explain to them how there mis-diagnosis changed your life and the damage they caused. They need to know. Cheers to you for being determined enough to keep fighting and smart enough to not accept their wrong diagnosis. Your super mom.
I always feel a little bad for not chasing down the doctors who didn't diagnose my thyroid problem, I suspect medicine would be so much better if doctors got better feedback. Afraid sometimes I've just left the bad doctors without even explaining, but of course that is always the point where I have the least energy to explain. Maybe something we should push for via medical records. I know the doctors here get feedback on what drugs they are prescribing (showing things like if they are keeping up to date, but mostly I fear cost control), but not heard so much about them under or over diagnosing conditions.
Even my mother's condition that led to lung transplant and her eventual death had her diagnosis adjusted/corrected by the transplant team, although in fairness to her doctor the diagnosis was adjusted from what it looked like (with caveats) to a diagnosis that didn't exist when the previous diagnosis was first made. The 100,000 genome project here recently reported adding a new diagnosis for 25% of participants, so there is hope of improvement coming.
I agree. And it’s not to be malicious, I think it will truly help people they treat in the future.
They probably won’t read it. The nurses or the the administrators will read them and file them under “crazy patients”.
I have done that, they don’t care.
@@deadcatlives6931 They might not care but if it changes what happens to the next person than that what counts.
I don't think I've seen you this happy before, especially not when discussing your health! I'm so glad you're feeling a bit better already, and I hope you keep improving!
Wow that’s a lot! Could you please make a video about the biggest differences in treatment? I don’t have anything like this, but I am curious.
Yes! Yes! Yes! I'm so happy that you got properly diagnosed. I'm sorry that the health care system failed you. As a future health care worker, I hope to be an advocate for patients like you.
I am so glad you finally found the right doctor. I had Breast Implant Illness which is just a label for a whole list of issues. But it took many misdiagnoses and many doctors when finally I found a doctor that was 80% on the side of believing in bII. I am almost 2 years out from having my implants removed correctly and all my strange illnesses have disappeared. What a relief!! But how scary it was when I thought I was going to die and was being laughed at by doctors.....I'm so excited for you to finally be on the recovery side of this.
My eye doctor caught my IIH before I started having noticeable symptoms. Listening to you and others I’ve since come to realized how lucky I was. Mine came on very quickly, and progressed rapidly to the point where 2 weeks from not even realizing I was sick and my eye doctor telling me I needed an MRI my symptoms had gotten so bad I could barely get out of bed and I now have permanent scaring on my optic nerve from the swelling. My eye doctor wasn’t the most up to date on research and started me off on to low of a dose of Acetazolamide but he helped me get in to see a Nero-ophthalmologist who specialized in IIH treatment and 3 months later my symptoms were gone. It took me nearly a year and a half to titrate off the medication, but I’m in complete remission. I find it more concerning that your eye doctor didn’t diagnose you after seeing the optic nerve swelling or seek further testing, especially since the swelling was bad enough to do an MRI. Just googling “cause of optic nerve swelling” brings up loads of info on IIH.
I have a very similar story with my journey of being diagnosed with IIH! At first we thought it was a CSF leak, but it turned out to be the opposite. It took quite a few years. I actually asked about IH at the mayo clinic but they told me there was no way I could have it because I was thin/not overweight. Turned out my pressure was through the roof! I'm so glad you finally got an answer and are starting to find relief! You deserve it ❤
Wow because they always hollering overweight and I’m like it’s got to be more than that to cause it
I don’t understand, do you don’t have a CSF leak because your pressure is to high ??
What were your symptoms?
I have several of those symptoms except the ear pressure/popping and fluid leakage. I’ve had neurologists and drs laugh me off for so long. I’m SO happy you’re getting answers and infuriated hearing your onset symptoms notes to to DOCTORS who clearly didn’t think long enough about the MANY things clearly not migraine. Thank you for reminding me to continue being my own researcher and try as many doctors as I can. So grateful you’re finally in the light at the end of the tunnel. You have suffered like a freaking warrior and inspire me to keep pushing after 15 years of no clear answers = stress must be the cause. I’m so fired up! And so happy for you! 🙏🏻
Have you found your true diagnosis? If you haven’t yet, I’m praying you do. Keep up your search. And you’re not crazy - you know your body.
Best to you 🙏🏻 ♥️
I am just crying and nobody understand this pressure,I get no absolutly nothing treatment.I have Avm....So thank you for you are just like me,all the best in life hugs from Norway !
So I went to this doctor's website and I have stopped crying in the last 15 minutes.
I feel so validated.
I've gad symptoms of POTS since March of 2019 and got told I was lazy, crazy, and attention seeking. I have so much more than tachycardia but that's all anyone ever addresses. My worst symptoms are the adrenaline surges! I always have severe impending doom, HR in the 160s, diarrhea, shaking, blue fingers and toes, temperature dysregulation, delirium, and flushing. It terrifies me every time it happens. I have blood pooling in my legs, crushing fatigue, tingles all over my body, nerve pain, nausea, headaches, fibromyalgia symptoms, dry eyes, erroneous sweat activity, etc etc. I already have EDS and Hashimoto's as well as a pituitary tumor and IBS. So reading all of this research on Dr. Driscoll's site and hearing what you're saying is just so... unreal. I'm so happy for you!
Hey girl! I just seen your comment and it makes me so happy to see someone get their answers. I got Jen’s good news video and now seeing your comment lol. I hope you get the treatment you deserve! I could only imagine how hard things must have been for you. Everyone I’m reading here, actually.. My Prayers and good vibes your way! I hope you get your relief soon! 🙏🏻♥️
I went to the ER for this and it took them almost 3 days to figure out that I had pseudo tumor cerebri
I'm glad you got a diagnosis! When I went to the ER, I begged them to do a ct scan. My er doc said it came back normal. I literally thought I was having a stroke. They gave me a migraine cocktail, and that didnt even touch the pain. I told my husband that I still feel something is wrong. I found a great nureosurgeon, showed him my scans, and he said immediately I had IIH and that caused chiari malformation. When he did a spinal tap. My pressure was reading at 46. 50 can cause brain damage and blindness. I got there just in time. It's sad that more doctors aren't familiar with IIH.
How are you now?
I have had the droopy eye, ringing whooshing in my ears nearly constantly, memory problems, brain fog, dizziness, vertigo with panic but really it was iih. I wondered where the people with my symptoms were. Exhaustion, pain behind the eye and it feels like my eyes could pop out, double vision, blurred vision. I am not overweight and Im lucky I was diagnosed quickly in the er. You are the only person that described me. All the research videos i have watched on you tube ignore most of these symptoms. They need to update things to help more people. Thank you so much for sharing your journey.
I have some questions regarding this matter. I’ve been experiencing the same.
I suffer with migraines. And sometimes they get so bad where my migraines make me throw up. Sometimes my migraine make me feel like the room is spinning. Sometimes my migraine feel like pressure in my ears. And sometimes when I have migraines I take out my hearing aids so I don’t have to hear anything. I was diagnosed with migraines back in 2015 a year before I got my fourth guide dog.
I'm so sorry you deal with all these symptoms 😢💜 My migraines do the same. They're awful.
I have had migraines for ten years now. Saw so many doctors, did so many exams. Weeks ago I learnt about IIH and everything resonated with me. I can't sleep horizontal because I'll wake up with a migraine during the night or in the morning and one of my nostrils usually gets stuffed. Sometimes the migraine goes away if I stand up, but other times it gets worse and worse until I throw up. I get incredible ear and skull pain when flying on a plane or if I go running. Once I almost fainted in the gym because I had to do leg curls with my head bent down. Unbelievable nausea hit, my vision went black, I felt a huge pressure on my head and I couldn't feel my legs. But I saw another neurologist today and he told me that I can't have IIH because my MRI is clean and I don't have eye damage AND I'm not obese. He even told me that I don't have migraines but head aches. So hey, I guess everything's fine and I've been making it all up for ten years.
Jen, I'm SO EXCITED that you have finally found a doctor who empathized with you and completely, 100%, understood where you're coming from. YAY!
I cannot WAIT to see that POTS care video! It sounds almost too good to be true. I would share my symptoms but I honestly don't know which one relates to which condition anymore and so I'd probably just confuse people. I have vestibular migraine and recently diagnosed with POTS and at last count the regular symptoms to list was around 14 so I don't know that I would be very helpful
Six years of this.....no diagnosis yet. IIH or a possible cfs leak was "suggested" by an orthopedic surgeon who never followed up and also another doctor, as well as my ex husband who is a doctor. The suggestions never went anywhere unfortunately. It's debilitating. I was told I had cluster headaches even though I didn't have any of the symptoms of that! Crazy! Six years ago I had a thunderclap headache with intense head pressure. For a moment I thought I was having a brain hemorrhage. Not having ever had this before I took some ibuprofen and it passed. Over the next few months I developed profound fatigue, extreme dizziness and vertigo (I could barely stand up in the shower and had to brace myself against a wall). I had a stiff neck all the time (I never had stiff necks before....ever, that I can remember....certainly not everyday). I had to quit driving because of the dizziness. The "headaches" became worse to a point where I thought my head would explode. I kept describing it as more of extreme pressure than a "headache". I would pace the floor for 10 hours at a time with it. Went to the ER twice where I was told I had a pinched nerve and was given an opiate for pain. I had pulsatile tinnitus, whooshing in my ears, balance issues and also lots of heart palpitations . I also felt like my spine itself was going to "explode". (I don't know if anyone else has had that experience!). My ex husband, who happens to be a physician told my daughter that my symptoms sounded like "spinal pressure". That's about all he would offer but over the last six years I keep going back to what he said and also an OS who said I could have a spinal fluid issue. Wrapping up, over the last six years I was sent to cardiologists, rheumatologists, neurologists.....just about everyone you can think of. The problem is, each specialist only concentrates on their part of the body instead of looking at the body as a whole....They don't seem to be able to look at the big picture in terms of ALL the symptoms and how they might actually be linked!!! It's so frustrating. I was given different pills and potions....again, only for the symptom or symptoms relating to a specific part of the body.......For example, I was given a heart med for the palpitations. I was given headache medicine for the headaches......It went on and on. My MRI was normal and I had no papilloedema......however, my insurance only pays for one visit a year so............there you go. If papilloedema comes and goes, that could be why. AND, many people have IIH with a normal MRI. My life or any semblance of a normal life stopped six years ago. I'm still trying to find someone who will actually listen. I'm going to see a new ENT next month..........I can only hope. Thanks for a great video, it gives me hope and encouragement. I'm so glad you're doing well!
I'm going through the exact same thing, although my headaches come and go, and I've been experiencing very diverse symptoms. Lately, certain parts of my face go numb, although I still feel pressure in my head and eyes. It's a torment.
Sometimes, I feel like I'm going to die because of so much pain and weakness in my body.
My vision has worsened; I have a lot of astigmatism and sensitivity to light. It's horrible; I can't stand the light at night.
I just hope that some doctor gives you an answer, or I don't know, may God guide you through this illness. It's difficult to deal with so many things at once; it requires a lot of mental strength. My best wishes for you, and good luck with the new ENT.
I have a very similar symptoms. Mine started 8 years ago and I’m just now getting a neurologist to listen. Thanks for sharing!
I am SO glad you finally found a doctor who listens to you, and knows what the problem is!
Wow. I am so happy for you to finally get the right diagnosis! How amazing. I'd love to see a vid on exactly what treatment is for that. This is really exciting!
I also have IIH, I don’t do videos but my treatment was diamox at first just to save my eyes and hopefully help me with the pain. I am very fortunate to not be undiagnosed for very long after the onset of symptoms. I went to the er for my ear bleeding. I had sooooo many ear problems. After my treatment was unsuccessful with diamox I fought with all of me to manage it on my own. Sleeping upright, watching my vitamin a intake, trying to eat more healthy foods, limiting caffeine etc. I finally had too much. The pain is soooo excruciating. I also couldn’t focus, I was a 911 dispatcher so I definitely needed focus. I did resign while having treatment. The neuro wanted and tried to push a device called a lumboperitoneal shunt. I had been having to undergo constant lumbar punctures/spinal taps that I completely did research on this particular shunt and the failure rate was so high. I denied that shunt more times than I can count. I then traveled to Texas, I’m from Louisiana and Instantly they said you need a Ventriculoperitoneal shunt (VP shunt) placed in my brain. This all moved very quickly. I was diagnosed with this horrible condition on January 16,2015 and I had my first brain surgery April 15, 2015. I’ve since had more due to shunt failure. I’ve had 7 total brain surgeries and 18 spinal taps. Treatment looks different for everyone but they generally start with diamox a very powerful diuretic. Sometimes if lucky enough you can find a neurologist that will order spinal taps especially if vision is going quickly. Last resort a shunt. Basically a device that drains the fluid.
For Jen, you may ask them to look into chiari malformation as well. They are sister conditions and sometimes in the iih world people have both. I do not but know several who do. I personally do not think iih is as rare as they say, I think dismissive doctors and lack of proper testing (spinal taps etc) are why it’s rare. Just my opinion which isn’t much lol I’m just a momma with iih but I can proudly say iih doesn’t have me. I don’t let it define me. No one knows by looking at me that I’ve endured and still do what I have. I no longer let this awful condition consume me. I’ve commented before but my iih brain doesn’t remember exactly when lol. Best of luck hun, and always know you are not alone!
My story is so shockingly similar to yours. Currently losing my vision while I wait for some sort of test on my optic nerves because they look “congested”. My Rheumatologist is the one who has brought up two things now that other doctors missed that are not within his own specialty.
I just love your video it's so rare to see others with the same condition as you. I was diagnosed with IIH about 6 years ago now and I would try to explain to doctors how I was feeling and they would just brush it off as a migraine as well and just tell me to take Ibuprofen. They always made me feel like I was crazy or something or even making it up. When I was finally diagnosed with it, it was personally too late for me I had lost so much vision I am now legally blind because of it and I also had to officially have a VP shunt put in to save what little vision I do have left. But the doctors I work with still act like it's nothing and basically I just need to stop acting like a baby. No one seems to understand the pain you feel especially during a flare-up. I also have POTS as well so I completely understand what you go through. I also have a few other conditions and it's extremely frustrating when your doctors just won't listen to you.
I'm so sorry this happened to you. So incredibly wrong. I have a video coming out tomorrow that talks more about POTS episode symptoms being brushed off as panic attacks, I hope you see it and love it and remember you're not alone, these symptoms are valid 💜
That is why it is important to seek out specialists. I was in a similar situation as you, but with a different condition. I blogged about it on my TH-cam channel. I can just say, people with migraines often have cardiac issues as well, and that was the case with me. Always be an advocate for yourself and push and push until you get answers! Never give up! I did not have cerebral issues, but another rare cardiac condition.
I also thought I had chronic migraines, that was at least what my doctor told me, but then I got a new doctor, and he said it was just tension in my neck. So I found out that I have a skewed neck and back, and now I am hopefully on the right course! Thanks to years and years of doctors telling me to take different kinds of meds, when it was just a chiropractor I needed!
And I am so so happy for you!!
I'd go see an Orthopaedic Surgeon if I were you. A Spinal Specialist to be specific. Chiropractors have limited knowledge and "adjustments" may not be the best thing for you.
I came across your channel when researching elimination communication and I noticed you have memory problems as well as migranes. I could definitely relate and wondered if we had a similar condition. I checked out your channel and found this and was very surprised. When you mentioned POTS, the neurological symptoms and hypermobility, I was shocked because this sounds EXACTLY like me. Thank you so much for recommending this doctor. I hope that I'll be able video call her and get treatment that will improve my quality of life.
I would also like to add that I am very happy for you that you finally found answers to explain your condition and found a doctor you can get proper treatment from. I'm really happy for you. Seeing you tear up in the end made me happy/emotional because I understand how things can get. My situation isn't as bad as your's, but I can only imagine what it must have been like to live through that. I'm really glad that things got better. And thank you so much for trying to help others and sharing this valuable information ☺️
Love and hugs, I hope you find relief. Dr Driscoll is amazing. Changed my life. With love from migraine jen in the comments section 💜
So I need to look into this now you speak my story😢 I have Cerebral Cavernous Malformation and Idiopathic Intracranial Hypertension
This is amazing. From Texas I am desperate to speak with you. I’m new to your page. Lost my husband and have a 5 year old little Miracle. For 15 years I have been misdiagnosed beyond anything imaginable. 14 surgeries including a pacemaker. Nobody could find anything “accurate” but a million diagnosis that now do not exist in my blood work. My primaries daughter passed away when I woke up from my last surgery and she was literally my rock. Us both having POTS. So do you have Pseudotumor Cerebri or it is false! I was in the ER about a week ago with the usual- horrible
Pain feeling like I am going to black out or stroke out etc. kidneys and heart had great appointments that day. Did a spinal tap and pressure was 38 on my spine and brain and got it down to 13 by draining 22ml of fluid where I was immediate sent to the neurologist and so incredibly thankful. And scheduled for a brain shunt as I couldn’t tolerate the medication and fluid came back on immediately. Would love to hear more from you and definitely would love to somehow (a miracle) talk with this doctor before this brain shunt goes in next week- knowing I am doing the right thing. 2 people in my family have had to go this route but nobody has lived the 15 years of pure desperation and illness like I have up to now. Nobody around me mentions POTS anymore so I am so hesitant and just have so many questions. And want to know before brain surgery and a 5 year old that I am doing the right thing. Luckily the surgeon went out of town for a week so possibly that bought me time to talk with you an maybe this doctor. Since she passed away POTS is just kind of not mentioned. I am the lost difficult patient with now having answers. But nothing is being done for POTS....our stories sound identical times a million. Would desperately love to talk more. As a new Momma....you can only imagine the thought with a baby girl laying here asleep- just she and I and me needing to know that this brain shunt is the right move. I went from excited and thankful to omg the POTS and is it the right move with POTS, etc.
thank you for sharing and hope to talk soon.
Kelsi Freeman
Abilene Tx
(325)200-9377
Or on FB because I rarely check an email! You get that!!!!
The ear and throat pain! OMG. I am just now in the process of being diagnosed with IIH. Yesterday I had my Lumbar Puncture. Since the procedure, I have felt the best I've ever felt in YEARS! My ear pain, throat pain, running nose and eyes, my neck and shoulder pain, exhaustion, brain zaps gone! My vision auras gone! My constant feelings of nausea and dizziness, gone. For YEARS I've been told my problem was allergies, hormones, and anxiety/Today is probably the first full day I've felt 'normal' in probably 10 years.
Ear canals is where it all started with me too jen . 6 mos ago . Now I’m here .
I don't know what I have but I don't think it's either migraine or IIH but I have been having issues with my health. Around 6 years ago I suddenly got period cramping and nearly passed out in Phys. Ed. It was like I could hear everything and I was aware of what was going on around me, but my vision slowly faded until I could not see at all. I was weak and the teacher took one look at me before sending me to the nurse. It happened repeatedly and was diagnosed with POTS. But I never fainted to do any movement or standing. It was only associated with my period.
In my first year of college, my symptoms changed. I fainted completely in the bathroom the week of finals. I completely lost consciousness as I fell. Talk about stress. I had brain fog and did not act as rationally as I did during past episodes. The doctor at the hospital diagnosed me with syncope (literally just means fainting) and sent me home with WebMD's syncope page printed out and a bill. My primary care doctor literally did the same thing. All the while I started taking birth control which stopped my fainting due to my period but since then I've fainted at work, nearly on the stares, at home, and so on. I was scared when I had no roommate because if I fainted in my room no one would know. All I know was maybe it was caused by abdominal pain.
Recently, I fainted in the bathroom. Again. No one helped me so I had to lean against the wall to get to my room to tell my roommate to get help. I cut my eyelid and had to go to the same hospital. I can't thank that doctor enough. Despite literally having no beds and every other patient in the emergency room having covid he gave me as much time as possible. Turns out I may have a heart condition or vasovagal syncope triggered by allergies (someone was smoking marijuana in my dorm) and two more medications to add to my growing list. You'd think I was 40 or something.
You may have saved my life with this video. Thank you ♥️.
Luna I'm dying to know more! You're so welcome
Thank you! Thank you, thank you, thank you! I just had an appointment with an ENT who said the pain is just migraines and they have changed due to my age then dismissed me. Because of you I know that I don’t have to settle for having no diagnosis, constant daily pain, confusion, ringing ears etc. I am searching for a doctor who cares, I might try your’s, but at the very least I am not going to give up. You found the answer and I know I can too. Thank you Jen! PS. I hope you had a great thanksgiving!
I wanted to drop in and tell you to keep going and keep searching for your right diagnosis. I could only imagine how hard that must be! But I’m sending you prayer for strength, and answers!
Best to you! 🙏🏻♥️
@@chrissy.saturday Thank you!
I had to lose my eye sight for them to figure I had psuedotumer!!!! Thank God it came back when the optic nerve went down!
If your struggling with headaches please have a optomologist look at the optic nerve! It’s literally going to be inflamed from fluid build up.
I also wanted to mention. I had a md tell me ppl with iih have a empty space on the skull that can be seen on an mri image. He told me it doesn’t cause symptoms of any sort but it’s frequently seen in ppl suffering from iih. If you have questions I’ll dig my records up and give you. More info…
I had headaches
Dizziness
Swooshing in the ear
Saw spots
Neck and shoulder pain
Blurry loss of peripheral vision intermittent in the beginning
Issues with standing and sitting
Persistent Pressure headaches
Nausea
It’s cray bc this is treatable and easily diagnosed with eye test (dilated) or measuring pressure while sitting up.
Ive had several spinal procedures over the years to measure spinal fluid. During the last one. I had to instruct the md to sit me up while measuring bc that’s how it always been done AND it’s they only way to adequately (-) measure (-) pressure! These doctors literally know nothing for sure!!! I’m here for anyone needing support or has questions about my ex with treatment and diagnosis of iih. I was diagnosed about 1 year after my 1st headache. That was 17 years ago. I believe most symptoms cease for woman while pregnant which is awesome!!! Hang in there and congratulations!!!
Would love more info on the empty spot because my MRI noted a partially empty.... something
This is so much info thank you sooooo much 🙌
@@MommingwithMigraine it’s called. expanded and empty sella with dialated csf spaces. Wish I could attach a picture. If you google search the image you can literally see an empty space on the area of an mri. Freaky!
@@getitrightbytee AAHHH SELLA THAT IS THE ONE! I had a partially empty sella. Should they have picked up on that clue for IIH? Is that an IIH thing?
Thank u so much for sharing those subtle details that pointed to iih.
My dad had iih. I have what feels a lottt like iih…symptoms are bad but docs wont do a tap, so those subtle signs are important to know.
Weather change destroys me, also head pressure and balance issues. But im not worse lying flat, no papilledema.
Just a heads up this is a bit long...
I've been having worsening health since I was a teenager, though I don't really remember much before then. I have been diagnosed with chronic complex migraines, tourettes, and finally (after years of trying to understand what's wrong with me) fibromyalgia. I still have so many issues I don't feel are related to those issues, and have been really scared as I've lost more of my autonomy.
I have pain everywhere, which is understandable with fibro, but I constantly feel pressure in my head to varying degrees and my neck is always ridiculously tense. All tests done come back normal so neurology said "stress" and sent me on my way. My vision has gotten worse, and my opthomologist can't detect anything abnormal from his tests either. I got new glasses but haven't been able to see clearly even with a more accurate prescription, and I can't go out at night without someone with me anymore because my night vision is just so full of static. The harder I try to focus on anything, day or night, the more pressure I feel behind my eyes until I get a migraine. I have to take claritin d every day if I don't want to have sinus pressure adding onto my allergies that pop up now and then. My ears are always popping, but often hurt even after they've released some amount of pressure.
If that's not enough, I've also started fainting, which started with me blinking and not being able to open my eyes for a good 30 minutes before my body went floppy (I already have issues with temporary paralysis of limbs, worsened by and sometimes caused by overexertion). Since that day several months ago I regularly have fainting episodes and am no closer to getting a diagnosis on what could be causing it.
I am so thankful to have a new rheumatologist who is willing to work with me without making me feel insane, but really hope I can learn what other issues I have that need to be treated so I can work again (was force "resigned" from last job and have had no income since mid January 2021... it's now almost December). I've been crying trying to get through my brain fog long enough to do anything meaningful to get aide, but as I'm sure a lot of you know, that's sometimes impossible.
I'm likely getting ready to move as my boyfriend has a new job opportunity, and worry about losing my new dr. I do have hope though, that I'll be able to find new answers wherever I end up. Sorry for the long text, I appreciate those who have read through it all.
I am sorry for what you are going through. I've had two years of going to eye doctors because of blurry vision. They said I had dry eyes, but also told me I should be able to see because there was nothing else wrong with me. Basically told me to stop overreacting.
After a long time advocating for myself I got an appointment with an orthoptist: a specialist for eye muscles. She tested my eyes and said that everything was normal, but also gave me a prescription for new glasses and explained to me that for some people it can take several years (!) for eyes to really get used to a new prescription. She told me to get glasses that had a prescription in between my old glasses and the actual measurements. I can see slightly better now with those glasses and will keep them for 6 months before graduating to my actual prescription.
I am not saying that you have the same thing, just wanted to share that there is hope for everyone, even when it doesn't always feel like it.
Congratulations on your pregnancy! That's nice your little girl will have a sibling so close in age. I'm happy that you finally got the correct diagnosis. Sometimes just knowing/understanding what's going on can take a huge weight off by alleviating the stress and frustration you feel when you know that you aren't getting proper care. I had a similar experience some years ago when I was dealing with back pain, so I can empathize. Now you have so much more to look forward to and hopefully, you can look forward to a life with less pain.
I had the whooshing in my ears, ringing in my ears, headaches, nausea and fullness in my left ear. My left ear is my biggest complaint. Luckily I went to an ENT who figured out what was going on quickly and referred me to another ENT who figured out I had a CSF leak due to IIH. I had brain surgery to repair it and felt good for a few months. Now it’s possible I have another leak. Very frustrating.
I'm so glad you found a Doctor that's listening and helping you. You look and sound so much better.
Diagnosed with migraine. Had an MRI recently. They did find lesions on my brain. Neurologist thinks it's from migraines but they are going to scan further to test for Multiple Sclerosis.
Symptoms: Tunnel vision, sparkly, blurry peripheral vision.
Numbness in hands and face.
"Migraine babble" pure confusion. Inability to read or speak properly. Can't get my thoughts out right! So strange.
Chronically dizzy. Especially when shopping. Tight isles, lots of stimulus, florescent lights? No idea why this specifically makes me dizzy.
For 10 years it's been "just migraine'
I'm advocating further now, hence the recent MRI.
Partly thanks to finding your videos.
I am so happy you are happy and are receiving some much needed care. ❤️
I am so happy for you and your family. No one should be treated the way you have been by the medical sistem.
I really appreciate that, thank you 💜
Thank you so such for doing these videos. Watching them is so helpful. I am seeing my Dr. post MRI tomorrow morning. Christina
I’ve had rem sleep stage tachycardia (only) for several years.
Recently my vision is worsening with double vision and occasional stars.
For 23 days both arms have been numb to varying degrees and I now suffer hemiplegic migraine symptoms directly after each tachycardia episode.
MRI shows no new stroke, I’ve suffered 2.
23 days of ringing ears.
I have migraines and headaches chronically but lately these symptoms don’t seem migrainous.
History of migraine and anxiety has doctors hyper focused that these are the cause. Issues improve when vertical and worsen when horizontal. So many similar symptoms to what’s expressed in this video. Will be discussing this with a neurologist on Tuesday.
Also, a weird symptom - I get worse when I leave my house and go outside into big spaces. I’m NOT agoraphobic. But if I go outside too long I get extremely exhausted and am worn out that night. It’s strange.
Totally remember you saying that your chronic migraines were so different than the old episodic ones. I'm so glad someone is listening.
This was so important and validating for me to hear your story. Thanks for sharing Jen! I can’t wait to reach out to POTS Care
It's so bittersweet to hear you relate 😪 hugs!! POTS Care is awesome. It's been years & I still use the info & supps I learned from Dr D on the daily 👏
Thank you so much for sharing this this is such a helpful comprehensive video. POTScare has been on my radar for a while so it's really nice to actually hear somebodys experience with it
So glad you feel that way!!!! I discovered POTS Care at the beginning of 2020 and didn't sign up until July or August of 2021. I completely understand your hesitation 😬 Hopefully the info I come out with over the next couple of weeks/months will help you decide whether they could be the right team for you!
Oh man, don't feel bad about crying because dammit I'm crying and this isn't even about me. Just... the hope in your voice and in your eyes. The excitement. The sense of possibility. You've always maintained a certain amount of positivity, but it was always... getting through it, making the best of it. It was positive but it was also... resigned, I guess. Now you can feel yourself healing, you can see the difference, you can believe in a better future, you can make plans and dream wild dreams and god it's beautiful.
It’s really validating to watch this video and walk thru the experience with someone else. I have struggled with migraine and IIH since childhood, but I never had diagnosis. 2 years ago I developed a cranial CSF leak. I am still working on getting my leak fixed because now I bounce between high and low pressure.
I relate to every symptom of yours except the dizziness and nausea. I had nausea when I was a teen, but it didn’t follow me into adulthood thankfully. The only med that helped was topamax, but it doesn’t help now that I have high and low pressure, now I get to chase my symptoms everyday. I see Dr. Hepworth in Denver next month. He is an otolaryngologist that specializes in cranial CSF leaks. Hopefully he will help me address the cause of my leak (IIH) as well. I am also an EDS zebra with “friends”. Thanks for the video and I hope you still doing better!
Your channel has helped me a lot with my migraines, which had been getting worse since I turned 20! I have better ways to describe my triggers and auras, I’ve actually identified some that I didn’t realize I was having, taking ginger has been super effective for my migraines too!
I feel like I understand them better and im more in control of them as opposed to them controlling and annoying me anymore.
I’ve been here watching your diagnosis journey and I couldn’t be more excited for you.
This was one big leap forward… hope you still have time to go back and tell off all the doctors that disregarded your case.
(And omg the tummy jiggle from your baby 🤗💕 so cute.)
I don't know if you'll see this or not but I'm now just finding your channel which sucks because I was diagnosed with iih in 2016 I have gone through so much with this invisible disease I finally do not have it after having a vp shunt inserted and loosing over half my body weight which is not your problem for your case but I was very obsessed after having my vp shunt I got My life under control :) best of luck in your health battles
I was sent to my neurologist after my ophthalmologist appt and him seeing the “dip” in my right eye and his concern for my optical nerves. I now have to go get a spinal tap to measure the fluid but listening to you I’m 100% sure I have this. I’ve loss some of my vision, ringing in my ears, the seizures, the random fluid leaking from my ears & nose, the headaches, nausea, dizziness, memory issues, pain in my eyes… I also just told my daughter today that I don’t get sleep I have to “tired myself out” so I can sleep because when I lay I feel the pressure mainly in my right eye. I thought I was going crazy! I’m in tears just listening to you and finally feeling like I know what the hell is going on. I’m a 3X college graduate and I’ve been struggling to study so I can test, I finished over a yr ago now!
Update: My opening pressure was 31!! I was confirmed having IIH.
Hey there! I came across your comments and I 100% believe I am going through the same thing. Do you mind if we chat? Or you can reach out to me? I’m literally going through hell because no one knows what I am going through with my symptoms
@@AlexisDifazio Hi, I don't mind. It's a very awful disorder I dealt with it for yrs because no one could pick-up what it was until that appt, so I suffered for yrs. How do you want me to contact you?
It’s hard for me to not feel bitter at being misdiagnosed for 50 years. Worse, given medications/treatment that at best just made me feel worse.
That's completely understandable, I'm sorry I stirred up those feelings 💜 You said misdiagnosed... do you have a new, more fitting diagnosis now? 🙏
@@MommingwithMigraine pretty much: age 4 was my first seizure, and I was treated for epilepsy for the next decades, each neurologist exploring more treatments, but not ONCE did they consider it was *actually* vasovagal syncope and not epilepsy. They ignored ALL the symptoms that were not a fit for epilepsy.
It was a paramedic who (a few years’ ago) just casually said, “oh… sounds like POTS…” I googled it and broke down crying because ALL the pieces FINALLY made sense (you know this feeling!).
Not a cure, but instead of arbitrary “breakthrough seizures”, I can now manage triggers. I lose consciousness far far far less now that I’m not on seizure meds 🙄. Finally having something that fits is soooooooo huge.
Once they got “seizure” in their minds, 10 different neurologists were unable to “see” or hear anything else.
@@KathySierraVideo Hey hun.. It sounds like you got some answers - which is nice! I’m so sorry you had to deal with your symptoms for far to long. Sending loving and healing vibes your way! I hope you can get some more relief. And answers across the board.
Best to you 🙏🏻❤️
@@chrissy.saturday ❤️❤️❤️🙏
My symptoms I took on my phone in roughly the order I started having:
Symptoms
-fatigue, brain fog
-Wooshing in ear (right) (started just sometimes at night, increased to constantly)
-Headache (eyes/eyebrow, head band, back at base and temple
-Neck pain and stiffness
-sensitivity to light and sound
-irritability
-Difficulty focusing/loose train of thought when talking
-Dizziness when heart rate goes up or fast position changes
-fullness feeling in ears
-Occasional floaters in my left peripheral vision
-Pain between shoulder blades and upper back and left arm/arm pit
-Whistle in ear (right) (occasion wooshing continues)
-Sudden tunnel vision with the feeling of everything thing being far away but at the same time feeling pressed in on all sides. Always accompanied by muffled sounds and loud wooshing in ears. Usually cause after rushing or running a short distance, getting heart rate up.
-Double vision (for the last few days before meds started work it was triple vision)
Nausea (like mild seasickness)
- when I close my eyes in a dark room I see flashes of white light. Turned into large light floaters when eyes closed in a dark room.
All symptoms worsen if change in position, especially bending over, or when doing activity that increases heart rate
THANK YOU FOR TAKING THE TIME. This is 90% just like me... it's almost as if I wrote it.
Why does it cause pain in between shoulder blades. Does these symptoms mimic a csf leak too. I’m currently experiencing most of those symptoms
Congratulations on the happiest I’ve ever seen you Jen. I don’t think I have what you have but it’s been almost 15 years since the lightning down my face and off we’ll find out what’s wrong the way you finally have
Hi. Thank you for this blessed video. I have had migraines since childhood, but lately I have had headaches all day, aura of numbness in my hands and arms that migraine medicine doesn't touch. This all started with whooshing in my ears. Also, sinus pain. Now I have lost peripheral vision and had a big floater come loose in my left eye leaving a lightning type zig zag in my vision. I have had two eye doctors examine me and there is "nothing wrong" with my retina etc. Once I lost sight in that eye briefly. My neck is stiff and sore. I have muscle pain and stiff joints. I also "forget" to breathe when I sleep and wake up breathless and anxious. I suffer from depression and anxiety. I have had tests for sleep apnea but they always say I am fine. I am supposed to have an MRI but not for 12 more days. I am afraid that they will say I am fine too, but I am not fine. Thank you again for sharing your wisdom and resources.
Full circle moment for me watching this. Years ago I watched your videos about your guide dog. I was healthy back then. Now I'm 24 and since December have been dealing with debilitating headaches that are constant, day in day out, and I have a lot of the symptoms you mention here. My doctor keeps sending me away with silly things that I know won't help at all. I randomly saw someone mention IIH on another video and looked it up. My jaw dropped at how similar the symptoms description was to what I'm experiencing. Was looking for a video where someone explains their symptoms and here we are.
Oh my goodness... welcome back. I'm so sorry about your symptoms!! I have a high pressure vs low pressure symptoms video you may be interested in looking at if you haven't already!
@@MommingwithMigraine thank you!!! I wrestled my family doctor into referring me. I needed my sister's help because I was getting dismissed (it's just stress/I made it up) so hopefully I'll get some answers soon. I'll check that out! Thank you and I wish all the best to you on your journey ❤️
Thank you so much!!!! I’m so tired of these neurologists ignoring me! I had cerebral spinal fluid dripping out of my nose. They said it was allergies!! It was clear and on a piece of soft pillow cloth. It never got hard even after a month!!! They didn’t care!!!
I am so happy that you stuck to your guns Jen, and finally have the correct diagnosis.
I’m so so happy for you that you’ve finally figured this crazy puzzle out!
YES with the ear bombs oh now validating . Jen I can’t thank you enough for all you do . Seriously, where docs hadn’t figured it out , I can turn to you for relief I’m so thankful 🥹 they told me to do the allergy meds too, but I said this isn’t allergy , this is way more complex . I’m going to see a neuro ophthalmologist but they’re booked until June . I’m going to try to get in sooner .
I finally got my diagnosis mid December, and met with a neurosurgeon and have surgery in just a couple weeks! Glad to see your finding answers too and working on feeling better! I have chiari malformation with a connective tissue disorder. I have always had issues but wask ok enough until I got suuuper sick during my second pregnancy 2020 and they kept telling me it was anxiety causing my tachycardia and other issues. I kept telling them something was wrong with my headaches and stuff, and now I do have lasting nerve damage because of the doctors who laughed me off too 😩 I had a ER PA straight tell me he didn't believe I had a bad headache. I'm thankful for the very few medical professionals who did their best to help me otherwise I wouldn't of made it this long that's for sure. Took me 2 years from my most severe symptoms to find an answer, one Dr had the answer and didn't tell me because he didn't believe it could cause the issues 😩 Here's to hoping for a better new year and better incoming medical professionals and just a better everything 💕
Thank you SO much for sharing your journey. I can’t describe how helpful and encouraging your videos have been. I feel like you’ve seriously been saving my sanity.
So in full honesty, I’m skeptical about the POTS Care Clinic. I checked out their website, and it looks like the cost for two months of care is over $9,000 and isn’t covered or reimbursable by insurance. 😬 I tend to be skeptical of doctors that have branched out to their clinics and claim to be different from all the rest too. Please be careful, gal! All that said, I hope that POTS Care is legit, and that you are able to find real relief and management for your symptoms. ❤️
I was diagnosed with POTS, migraines, which are often accompanied by tics; swallowing issues with silent aspiration, retina problems, two unprovoked DVT’s, Raynaud’s, and TMJ issues, and I have joint pain and other odd symptoms that have never been pinpointed.
I’ve been searching for answers for 5 years (going on 20 if we count my younger years when thing were less chaotic).
I recently found out that my family has a slew of symptoms that their doctors have suggested could be a connective tissue disorder such as EDS. I have an appt with a geneticist to find out if this could be the reason for the insane amount of issues the past five years.
I had an appt with an ENT last week because of several ear symptoms, including a feeling of fluid in my ears. I also get crazy neck stiffness and headaches in the back of my head and eyes. It’s a big relief when I lay down. Exercise and other things like potholes while driving, speed bumps, etc., make it much worse.
I outright mentioned that I am concerned about a potential CSF leak because of my medical history and my family’s medical history to my neurologist and ENT, but my MRI of the brain and ears came back normal and they seem to think I need a bucket of fluid draining from my nose to pursue a CSF leak diagnosis. They suggested that I have Eustachian Tube Dysfunction and prescribed an antihistamine nasal spray. The ENT said to give the nasal spray a week to work, and if it doesn’t, we would move forward from there. I’m convinced that if the nasal spray does nothing, I still need to pursue a CSF leak specialist.
Your videos have given me hope and the knowledge that I need to keep going and to pursue answers. Thank you!
Sounds you like you're doing great, I'm delighted - the difference in you is just massive, I haven't seen many of you're recent videos, you seem a new person. Maybe in 6-12 months after the new baby, when the dust has settled, the TH-cam channel name will become defunct and it will be around patient advocacy or something like that. Best of luck, but sounds like getting good care. I hope your progress continues.
I'm certainly not 100% but on good days I definitely feel like a new person! Thank you!! Here's hoping my youtube name can change to... hmm.... maybe something with "remission" in it 😋
I'm so glad you found this clinic and got so much more information and help. Thank you for sharing because I'll definitely be looking into them and keeping them in mind.
Fluid leaking from my nose, brain fog, HORRIBLE insomnia (pulsile whooshing in my ears), tinnitus, and my severe pelvic floor issues and straining to go to the bathroom making my positional nasal leaking WAY worse. No migranes, sometimes some slight head pain on the right side, neck pain, POTS (most of my whole life).
im so happy you found them watching you suffer even made me cry but some of my symptoms matchs well most if not all do
Oof, I am so torn on this video. On hand hand, I have been cheering for you for quite some time especially since I started to suspect IIH (much worse than mine), and I am really glad to see you finding some relief. On the other hand, this center sets off major red flags (e.g. is an optometrist rally seeing patients for medical consultations and directing care?). It's a situation where it is all too easy to prey on people who are desperate for someone to just listen to what they are saying about their own bodies. I get that people without actual medical training can teach themselves a lot, and the actual medical care options are limited, but these kinds of results sound too good to be true. I hope you have dug or will dig deeper before giving them more of a platform.
The proof is in the pudding 🙌 I was seen by probably 40 neurologists, neurosurgeons, optomestrists, neuro-ophthalmologists, ENT's, cardiologists, etc etc at top research institutes and not only did they gaslight me and miss my diagnosis, their advice and piles of pills only made me sicker. Most of them were no help because they saw my rapid heart as anxiety, they are not up-to-date on the latest CSF-related research, and for the most part they've never heard of POTS or EDS... certainly can't connect the dots between them. If a particular degree is really what you're looking for, I was seen by an MD during my appointments at POTS Care too... but in my humble opinion, the simple presence of a degree is no good if it doesn't help the patient, so there's no need to feel torn just because you don't think her credentials are sufficient. She's dedicated her life and career to research since... something like 2004? so she's ahead of the curve.
Most importantly... you're right. I was desperate. And with Dr. Driscoll, I was heard and got diagnosed!!! It's actually quite common for optometrists to be the ones to pick up on IIH. I am supported now, I have been educated on my conditions and feel empowered by the great progress my body has made with Dr. Driscoll's science-backed methods.
^ don't mean for this to sound so blunt, just trying to be direct in the interest of time 💜💜💜
Very true. It’s important to note that POTS Care doesn’t accept insurance and their cost of care is much more than many people can afford. I was able to get an intracranial hypertension diagnosis through the traditional medical system, and while I agree it’s frustrating it really sounds like Dr. Driscoll tries to fit every patient into her own very specific experience of diagnosis, which also leads some people down the wrong path and is no better than other doctors frankly.
Jen so happy!!!!!! I cried❤️ I have migraines and the symptoms are not like yours. And I confirm migraine aura is not just when you lie down. And I have never heard of quite the rainbow you described being related to migraine.
I'm so glad you're finally the proper help❤
I am so so incredibly glad you found this clinic Jen. Absolutely amazing
I'm so glad to hear you get forward. It's ok to cry, it's healthy to cry if you feel like it 💖
Thank you so much for sharing your story with us. I recently got diagnosed with vestibular migraine and pots after being out of work for almost two years suffering. I have almost identical symptoms as you and have been following your story. None of my doctors seem to fully understand the picture and I have a very hard time telling if I am having vestibular migraine or pots symptoms. I recently noticed that I constantly feel very stuffed up and full especially around my nose and eyes and almost always have ringing in my ears. My symptoms are worse with temperature changes, pressure changes and awful during any kind of movement or change in position. I also got pseudo seizures when I tried topiramate. I think I want to look into further diagnoses because I fear that my doctors may not have the full picture still. You have been such an inspiration to me and I don't feel as alone because of your videos so thank you so much!
What a huge relief!❣️ I’m so thankful for you getting the help finally that you’ve deserved for sooooo very long!♥️🥰🙏🏼
I’m going through something medical that I could never even have the courage to share on TH-cam as I don’t think anybody would believe me. It’s unreal, but I know it happened as my husband was at 2/7 appts and they were 2 of the worst 5. I feel so alone and my life is slipping away as I can’t move, don’t have family or money to go elsewhere and nobody here seems to care and in addition they seem to want to make me feel as lifeless as they can and as hopeless as possible. It’s gotten to the point over the past 11 months that my life is ending and I don’t know what to do anymore.
I don’t have the right to go to a different dr/clinic as it’s the only one.
Anyhow enough about me.
I can’t believe you’re 32 weeks+ already!! You are so smart and so beautiful and I bet you are a wonderful mother and wife and it sounds like you have an incredible husband and again I am SO very thankful you’ve got the support you have including this dr with a ♥️. Xoxo, Kimberly.
It is insane how much my story and symptoms match yours.
You're not alone 💜 thanks for the reminder that I'm not either
Your previous video on IIH has me wondering about myself to the point that I'm planning on bringing it up to my doctor to possibly check me for it. I've had migraines since I was a little kid. I wasn't diagnosed until my 20's though. I always have the pressure feeling during my attacks. A lot of times it feels like my head is going to both explode & implode. I get an increased pressure feeling in my ears when I bend over, lie down, or get up. I always have pressure behind and/or around my eyes when I have an attack. My nose stuffs up before and during an attack, but also runs sometimes. My neck & the back of my head always stiffen up during an attack. When my attacks are bad, I have minor balance issues, but I have fallen more over the past year than before though. So it seems that is getting worse. But, for years when I wake up to go to the bathroom overnight I litterally "bounce" from wall to wall in order to keep my balance. If someone that didn't know me saw me do that, they would swear I was drunk. Back to the ears, I almost always hear some level of ringing in my ears. It's rare that I don't hear at least a faint ringing. When it comes to auras, mine aren't what people usually describe. Before a migraine attack, if it's going to be a bad one, I will get random electrical shock sensations from the arch of my foot (either one) going upward in to my knee. Sometimes up as high as my mid-thigh. I will also get them in my thumbs going towards my wrists. My visual auras look like moving fish nets with dots where the strings cross. I used to get flashing black & white lines along the outer edges/corners of my eyes, they looked a lot like hazard lines. My eyes & nose usually get runny right before & during the beginning of an attack. That usually stops around the mid point of the attack. My attacks seem to always be brought on by weather changes. I actually started following your channel, because you have a lot of the same symptoms that I have. I love how informative you are and also how you stress that everyone has different experiences when it comes to migraine. So many people think that they are educated about migraine, because they know their own experience like the back of their hand. As we all should. But, for so many that's where their education stops and they feel that is the only way to "have" & experience the disorder/disease. So many also don't realize just how many different types of migraine there are, and that some of them are actually painless. Plus, not to mention, all of the other conditions that migraine are linked to. Whether they are migraine caused, or migraine is a "symptom" of. It's not always a condition that is stand alone by itself. I know this comment is long, but I thank you for creating your channel. You have taught me some new information, that I didn't previously know, to add to the knowledge on migraine that I already had, & you are making me take another look at my own diagnoses (3 types of migraine over the years) and I am questionable enough to bring it up at my next appointment. Thank you!
Hey girl. I seen your comment and wanted to send some love and prayers that you find your true diagnosis. I bet it’s hard going through all of that and not having the correct treatment! Best to you and I’m sending loving vibes your way! I hope you get this figured out 🙏🏻 ♥️
@@chrissy.saturday Thanks! If this happens to be my true diagnosis it will explain soooo much of my life! After I saw Jen's first video about it I went & had a conversation with my hubby about it. He also thinks that we should look in to it & agrees that it would explain a lot of my symptoms.
This video just further confirms more of my symptoms and my thoughts of having IHH as well. I don't have the severity like you, but I have noticed, also my husband, has noticed the rapid decline in mental capabilities in the last 3 or 4 years. My vision is more and more distorted and memory is affected, cognition is affection. Luckily right now a good few moments that I can type this before my migraine takes more control of my day. I find as the day progresses on, I lose my ability to think clearly, to put thought to words correctly, to even concentrate on a simple task escapes me. Typically I have to ask my husband what I'm thinking, by giving him clues. It almost becomes a game, and sometimes it's annoying, but I'm trying to keep it as light hearted as possible. Some days hit hard, and I break down. I get so dizzy sometimes, I can't look at anything, I can't move. I cannot be in a quiet space, as the ear pressure from the silence is painful, so I must have something on , even if quietly. I cannot handle scents as they instantly trigger me into a most ferocious knife stabbing you could ever imagine. I have extreme difficulty getting to sleep due to the ear pressure, the eyes, the head... all of it.
I'm just sick and tired of doctors ignoring everything and saying take this pill and leave. NO, listen to me and investigate! Help me be healthy!
It's infuriating that the doctors are ignoring your worsening symptoms. It's not right 😡 I have the same situation where over the day I'm just worse and worse. Hubs and I do the same... just try to make the most of it. Try to enjoy the little things. You might enjoy the Migraine Jen Playlist. It may help you feel less alone when your brain is running at 10% 💜
@@MommingwithMigraine I have actually sat back and had conversations with her!!! Ya, I did that, lol. Think it's a bit tacky? Maybe. BUT it is helpful, and feel less lonely to talk with you both. I answer your questions and reactions by describing if it's like how I feel. Almost like a Zoom meeting with you.💜 Did you capture a picture of yours and Buddy's footprint art in the snowy backyard???? I commented on your IG story ;) arreismors is me
@@ArreisMorsCI that's cute 🥰
You're literally describing me 😭 I've had a headache for about 12years, migraines, authostatic intolerance, hsd, spots when I cough, dizzy when I cough, migraine triggered by coughing, etc etc
I just found your feed today after ordering the Weather X earplugs and looking for reviews online. I have had debilitating migraines for about 2 years being 5 years out of chemotherapy for breast cancer. My first symptom was pulsating tinnitus after chemotherapy but now have a bunch of mixed up symptoms including barometric pressure migraines, vomiting with migraines, migraines worsening with coughing/movement, cranial pain/sensitivity, cervical spine pain and cracking daily, dizziness when standing up, anxiety, depression, inability to focus, TMJ, eye pain are some of the symptoms I can think of at the moment. I have had different diagnostic imaging on my neck and head with nothing showing up. Over the counter medication doesn’t work anymore and my doctor recommended migraine medication and tracking them with a journal which I do. Looking to avoid medication if at all possible, which is why I’ve purchased the ear plugs. Thank you for your videos!
I have been diagnosed with IIH 1.5 years ago. I get pulsation tinnitus, head rushes, anxiety , heart palpitations. Sometimes headaches. I just had my vision checked and no papilademia. Now I have been getting Pots symptoms. Head rushes fast heartbeat on standing and light headedness. I was diagnosed on MRI. Thank you for this video. What have you been instructed to do in regards to medication?
Mri shows the fluid?
Wow, this is coincidental. I have written you before a while back and talked about my son who has POTS and seizures and how he has no life. Been treated badly by many dr.'s and frustrated the good ones because I won't give up - whatever that means. Anyhow, about a month ago I happened upon a British cardiologist who became very interested in POTS, as he had a lot of dysautonomia patients. He so wanted to help them and he experimented with a drug called Mestinon ( it has another very big name, but I can remember this one.) with many of his POTS patients and found it really helped reduce many symptoms. He really understands the stress these people live with, which was refreshing as I have never met a dr that truly seems to understand my son's symptoms are related to this fountain of stress gurgling within his poor body. This dr explains the imbalance between the sympathetic and parasympathetic ( flight and fight vs rest and digest) common to people with POTS and many patients get some relief with using drugs that inhibit the sympathetic response. He got this idea from someone else and said so, but why shouldn't we also use a drug to increase the rest and digest to go at balance from both directions? He further explained the importance of acetylcholine in the rest and digest response and how Mestinon inhibits the breakdown of acetylcholine. Many things could cause one to not have enough of this neurotransmitter. So, while waiting for our cardiologist to respond to my request for his opinion I looked up natural ways to prevent the breakdown of acetylecholine and found Dr. Driscoll. I had seen her before, but at that time I think one had to go to her clinic. Or I felt his case was too complex to not go there, but we just were not sure about it enough to try to come up with the money to go there. So, I saw the Parasym Plus literally the day before I saw this video and it purports to do what I wanted the drug to do. It will be here tomorrow. I just hope he can tolerate it. So, when I was listening to you I had a feeling it was Dr. Driscoll you consulted, but was still surprised when you said so. I was so excited to see, though, her teaching the importance of preserving acetylecholine. I am so happy you found someone to hear you and understand your suffering and needs. Very exciting!!! I will let you know how the supplement trial goes.
Wow, insane timing! I'm actually taking parasym plus, it's really helping me!!!!!! Ive found it to be gentle to me, too. You can get 10% off with my discount code MOMMING 😘 I hope it helps him too! 🙏
They can't figure out what other tests to run for me. I've had total blindness upon standing for like 5 seconds it goes out gradually and then returns, flashing blind spots/stars without changing position, feel my pulse in my whole body and head as well as hear it when I lie down in bed especially when very tired, passing out and the pulsating starts at the base of my spine and travels up my body usually into the head--just injured my neck from passing out recently too 😢, eyes going wonky and not looking in the same direction, O2 sats tank, fasciculations, staring, difficulty feeling fully oxygenated from breaths (feels like smoke inhalation or like I'm in a steam room and struggling to get the oxygen because the air is too saturated with water), and coughing here and there. Also can't talk when my heart skips beats--like literally cannot produce sound with my vocal cords and will stop being able to speak mid-word when it skips until I feel the thump after the beat skips. I also have Alice in Wonderland Syndrome and have been getting increasingly forgetful, losing track of thoughts. When I am tired, I get so cold to the touch and my body physically cannot warm up without sleeping. I have coordination issues and I often tear out of one eye before really bad episodes. I have hypersomnia and can sleep day after day 19 hours a day unmedicated and am essentially comatose when I am asleep (even slept through a fire in my house and many fire alarms when there thankfully was no fire). I feel like my head is going to explode and I have nystagmus, especially from caloric testing and when I am tired during which it almost looks like I am seeing a spider when my eyes shake but it really is just a spot on the wall that looks like crawling because of the weird eye movements. I also have scoliosis and multidirectional instability of both shoulders and instability in most of my joints--7 out of 9 Beighton score and the only two missed are bilateral knees but all other non-tested joints are unstable. I also get ice pick headaches and have constant neck pain and jaw pain. Sometimes I genuinely think the chair I am sitting in is genuinely tipping over and I slap the desk to prevent my chair from fully falling over and would have no idea my chair was not tipping over at all when I do this if someone didn't tell me every single time that they were confused why I suddenly slapped the desk and that the chair wasn't tipping over at all. When the car kicks back at stop signs when you come to a full stop, I get dizzy.
What we know: Seizures, other heart issues, dysautonomia, microsleep attacks, lung issues seen on pulmonary function tests all ruled out and had like 20 negative COVID-19 tests in the 2 months before symptoms even began (required for school) and then also for 4 months after twice a week all negative. Already diagnosed for years with vestibular migraine. Also have hypermobility. I didn't have papilledema. Hoping someone in your chronic illness community has thoughts. Saw neurologist, pulmonologist, electrophysiology, neurotologist, cardiologist, endocrinologist, gyn, and ophthalmologist.
Oh mannn girl! I don’t have answers, but I am sending loving prayers and vibes your way! I hope you get the help you so desperately need. I’m so sorry to hear this.. I couldn’t imagine how hard it must be. Heartbreaking.
I hope someone reads this and recognizes some of your symptoms, or you get answers somehow. Best to you dear 🙏🏻♥️
Thank you so much! The first part with the passing out and the pulsating as well as the stars and flashing lights and blindness upon standing are what worry me the most, and those are the most new symptoms of the bunch listed. I think that this is probably multiple health issues which is why it is so hard to tease out which symptoms belong to what condition.
Thank you for making this video! “Vitamin” A toxicity is a real thing and has been linked to this condition (and many others). Worth considering.
Appreciate it I'll look into that. 💯
My daughter has EDS, Pots and friends...the worst is gastroparesis and migraines. I've been diagnosed with migraines after having mri to rule out MS because of fatigue, brain fog, dizziness and numbness in my face. I had spinal mri that came back with stenosis. Then started having bad headaches. My scalps so tender, I often can't put my head on a pillow or brush my hair. One night my head filled with pressure as I laid down, I felt my brain move downwards inside my head. It was so scary. I've seen neurologist and ent and all they are saying is "I really think it's migraine related". The top of my head feels like there's something resting heavy on it. I have a constant muffle sound in my ear, I hear the whooshing of fluid in my head, and my ears pop all day long from pressure. My ent did a sinus ct showing fluid buildup. She did a hearing test, I need hearing aids for some reason. So far, it's been six months of drs giving me migraine preventatives and tests they aren't doing anything about. My daughter has the same issues with drs all the time. It's so frustrating.
21:33 I had goosebumps, I'm so happy for you!
Awww thank you 🥰🥰🥰🥰
Oh my gosh Ive never noticed you call that meerkat with Buddy! Thats what we call it but Ive never heard anyone else lol!
Hahaha it is THE PROPER NAME I'm pretty sure =P
Your story sounds so familiar! 20 years suffering. I wish there was a way for me to get in with Dr. Driscoll! I have so much respect for her and her work. Unfortunately, insurance doesn’t cover the providers care that are experts in the area.
Hello, what treatment are you on? If currently treating. I just found this page. I was diagnosed about 17 years ago. I’d love to share my experiences if your interested.
So, my particular health issues are not migraine related and don't cause migraine. However, I do have a health issue that took WAY too long to be diagnosed, and in hindsight I'm more than a little pissed, because it could have killed me. Telling the story properly will be kinda long and ramble-y, though, so apologies in advance:
So, it started with me getting 10 ear infections between when I turned 1 and when I turned 2. Then at age 4, I stopped growing. Like, completely stopped growing. I was also super tired. I never had that boundless energy to run around like most kids do. I wasn't super talkative. I was never prone to emotional outbursts. I just wanted to sleep or sit around playing quietly. This lasted 3 years of my parents taking me to doctors and being told I was fine, they just needed to feed me more. I didn't get diagnosed until I was 7. Three years of not growing at all, and getting increasingly lethargic and reserved. According to my mom, by 7, I was almost completely non-verbal.
If you Google reasons a child would stop growing, the top things that come up are dwarfism, starvation/nutritional deficiency, growth hormone insufficiency, and hypothyroidism. We knew it wasn't any sort of dwarfism, because there's no history of that in our family, and I wasn't growing disproportionately, just...not growing. I wasn't skinny either in the way I would have been if I wasn't being fed properly, despite having very little apatite. The other two causes can be confirmed or ruled out with a simple blood test. So why did it take 3 whole years to figure out I had hypothyroidism?
For context, little lesson about thyroid hormones/health. The thyroid controls energy levels, providing energy to the mitochondria in every cell of the body. TSH is what they test to check thyroid health. TSH - Thyroid Stimulating Hormone. It's released by the pituitary gland to tell your thyroid to make more thyroid hormones. The higher your TSH, the worse your thyroid function. I think of it as your body adding exclamation points to a message. At first it's mildly elevated, requesting politely. As time goes on and that request gets ignored, you produce more and more TSH as your body gets more and more desperate for the thyroid hormones it needs. If it continues to go without, your body doesn't have enough energy to keep you functioning, and slowly begins to shut down. Eventually your metabolism slows down so much your other organs can't function, and you can slip into a myxedema coma, which has a mortality rate (risk of dying) of 25-60%. Normal TSH for a healthy person is between 0.4-4.0, averaging between 0.5-2.0. The recorded cases of myxedema coma I've found that show TSH were a TSH of around 100.
My TSH at diagnosis? 800+. Literally don't know how high it was exactly, because the lab stopped counting at 800, so all I know is it was higher than that. The doctor who diagnosed me with autoimmune hypothyroidism was amazed I was still alive and even semi-conscious, because the ear infections when I was 1 were likely the trigger of the attack on my thyroid. I was likely at risk for myxedema coma/crisis since I had stopped growing...three years...all because the doctors didn't think to check my TSH when I stopped growing. The fact that I lived through it at all is nothing shy of divine intervention/luck.
This is awesome to hear, in the way that you’re able to find out what’s REALLY happening! Amazing!!!! The frustration/ relief, is a very strange juxtaposition.
What date did you find out your specific change in diagnosis?
Thanks so much! I found out August 10 I believe. It was my first appointment day with the clinic.
SOOOOOOO glad you got the the right diagnosis. You motivate me to keep searching for the right care! Wishing you the best 💕
I have so many similar symptoms. It took half a year to get my vestibular migraine diagnosis, but this really has me worried. Near the begining I had an eye exam that detected pressure behind my eye, and then had a normal scan so the worry of psudo tumor ceribri was put aside. Now I wonder if I should look into it more. My most common and severe symptoms are dizzyness, loosing depth perception, aching behind the eyes, blurry vision, tunnel vision, light sensitivity, and flashing and moving lights when I close my eyes (I refer to it as strobe lights). And I have what I've always been told is constant sinus drainage down the back of my throated.
I know this is from 3 months ago so I hope you have gotten a second opinion by now but IIH stands for Idiopathic Intercranial Hypertension. Idiopathic means the cause is unknown. If by scan you mean MRI, a normal scan is one of the things used to diagnose IIH. If something shows on the scan like a tumor or blood clot then the Intercranial hypertension has a known cause. Nothing on the scan meaning the cause is unknown (idiopathic). You need to get a new eye doctor.
I am SO happy for you! It’s about darn time you get some relief.
For the record, I always believed you. As I’m sure most of us here did. I know we all wanted you to get to the bottom of this. Again, super happy for you! 🙏🏻 ♥️
Let me preface by saying I have not yet been diagnosed with pseudo tumor, however, my new eye doctor believes I could have it or have previously had it- after watching your video and doing some research, so do I. When I was 15 I was diagnosed with chronic migraines. It was so debilitating that I would have to be pulled out from school many times as it would lead to nausea and vomiting. I saw a neurologist for about a year and a half. In that time, I began to notice issues with my vision. So I saw an eye doctor and got glasses. We believed the migraines were caused my “eye strain” since the pain of my migraines usually resonated from behind my eyes. It wouldn’t be until I was in college when seeing a different eye doctor, she noticed something - one of my optic nerve heads was extremely swollen. I had to see an eye specialist and they concluded it was optic nerve Dusen. Really nothing came of that since at that time my migraines were minimal so there wasn’t much concern. Fast-forward a few years later at about 21 years old - I began to notice occasional headaches, a bit different from the migraines. I also noticed dizziness and later a whooshing/pulsating sound in my ears, which I brushed off as tinnitus. This eventually went away, or it was so sporadic that I didn’t think much of it. However, it came back last year. Once again, I ignored it - this time thinking it was more related to stress and anxiety since I had started a new job. Just recently at 25 I had to get my own health insurance thus getting a new eye doctor. I filled out the new patient paperwork, mentioning my history of chronic migraines and optic nerve drusen (I did not mention anything about previous symptoms of dizziness and tinnitus since I didn’t think that was somehow related to my vision). My exam showed that now it is not just one, but both of my optic nerve heads are pretty swollen. Right away my new eye doctor says “you may have a pseudo tumor” he procured about if I was experiencing any headaches recently to which I said no, and he suggested I look into pseudo tumor if those symptoms ever reappeared. Not once did I mention the dizziness or tinnitus to him… just based on history of migraines, and optic nerve swelling he put the pieces together. I feel like it all finally makes so much sense! I don’t know how or why my symptoms miraculously disappear and reappear. However, if the symptoms appear again, if we begin to discover worsening in my vision, we at least have a lead!!! Thank you for sharing your experience and I hope that treatments have aided in an improved quality of life for you!
Hell ya Jen!! Finally!!!!
It really boggles my mind that they have all of the specialists for different parts of the body,which is all connected, yet they don’t connect them medically in their training
I have hemiplegic migraines but also share a lot of symptoms with you and IIH. I had my MRI come back normal and feel very strongly that there is something more going on than my regular migraines as I’ve been on a steady decline with seizures now happening ( completely new symptom for me). Constant pressure in my head and neck and constant ringing in my ears too. Waiting on a referral to a different neurologist because the first one I saw was god awful and was dismissive and unwilling to even listen to a word I said because I look able bodied but have a service dog. Hopefully I will get some answers with the new neurologist.
You know what.. I was diagnosed migraine because of the episodic ones I'd had in the past. Once I was dizzy, they said vestibular migraine, then with paralysis they changed me to atypical, or some said hemiplegic (even though it was bilateral). With the seizure onset it changed to "complex" or "complicated." The other stuff never went away, I was just adding problems and declining and it was happening 24/7. With or without migraine attacks. Sounds just like you?!! Once I got POTS I knew there was definitely more than migraine, but this makes me wonder how many people are brushed off as migraine and actually have a mild or atypical presentation of something else 🤔 I am sincerely hoping you get some answers!!!
Hey hun. I seen you comment and I hope you get the treatment you deserve soon. Sounds rough what you’ve been though! Sending prayers and good vibes your way.
Best to you 🙏🏻❤️
I literally have all your symptoms and I have eagles syndrome. Styloid bone growth. I have a surgery for it in a month.
I'm so happy for you.
Im so so happy that you found a good dokter that takes you seriously.. I have episodic migraines that get trigger by hormones or sometimes stress...one day I was sitting on the couch and it felt like something snapped in my head and I got really seasick that stayed for weeks, where I couldn't even walk normally, i was pucking my brains out and my dokter didn't even want to see me, he just said, well that happens sometimes, look at the bright side, maybe you will losse some weight before summer..... I switched dokter the next day and luckily I found a good one pretty fast, who took me seriously and was willen to look for a way to treat my migraines so I can function normally..can't imagine what you been through..
I’m so happy for you! Finally a diagnosis that fits! Your doctor sounds amazing. I’m excited to see what the future brings for you 💜