Want to meet the AMAZING doctor who gave me my life back? Interview/Q&A with the POTS doc who diagnosed my IIH: th-cam.com/video/W0fdvz9I9Ac/w-d-xo.html (second half coming this week!)
I’m 17 with hydrocephalus in these two years I’ve had 7 brain surgeries 3 spinal taps and 3 nerve blocks and still am with severe pain whenever I’m upright . I’ve also been misdiagnosed because I had an anxiety attack and after that they blamed my pain on my anxiety. When I was having anxiety over my pain which gave me 3 nerve blocks needles going into all four corners of my head . I didn’t even need them. I’m still having severe head pain . The last brain chest and stomach surgery was in April . And it slowly grew in the daily personal inner torture chamber.
It is disgusting. These doctors don't want to admit they don't know. Instead of working with you until they figure it out, they make you feel like shit
I agree. It's awful. And God forbid they see in your chart you have anxiety, that will become the catch-all for everything they find. I have completely lost faith in our medical community.
This is why we need more doctors who have experienced chronic illnesses and disabilities either in their own life or those close to them. Doctors need to understand what we are going through before they can properly diagnose us. Glad you got the answer now!
I am crying because I found your account. I am currently progressing from a some time migraine suffere to a chronic migraine, with visual disturbances sufferer. I have been progressively getting worse over the last two yrs and no one will take my symptoms seriously. Botox worked for a short time and now it seems to have stopped helping. I’m at the end of my rope 😢 I have a 6yr old daughter and I’m tired of not being able to parent her. 😞 I’m so happy you were able to find a dr who will listen to you.
I watch you chanel as I have all the same issues! Have been diagnosed with all the same things. Im definitely having my neuro follow up on this. Thank you! Keep fighting!
I have IIH and was diagnosed with chronic migraine in addition. It still feels like a battle to have all my symptoms and concerns addressed. I am constantly researching. It’s exhausting. I completely understand your situation.
The weird part of TH-cam. Being so proud and happy for someone who has helped you so much and doesn’t have any idea who you are. I can’t get over how happy I am for you and your family. Your videos have been such a help with my own battle. It’s so great.
I was misdiagnosis with the same thing! I saw a neurologist for years with no help. After going to the ER and the Dr suggesting that might be a possibility and switching neurologists I finally had an answer. I'm glad u finally have a piece to the puzzle.
Oh My God that is literally what my neurologist is concerned I might have! And I have been paying so much attention to your journey in particular because some of symptoms are very similar. I am SO happy you have gotten your answer! I hope I get there soon.
It’s horrifying that your answers come from social media instead of the top notch doctors! I literally feel hopeless and seeing my nurro costs allot out of pocket as well as trying things like Botox Becasue it all costs money meanwhile it seems that no one can find the underlying issue but I’m happy your getting some answers finally
I’m so freaked out. I’ve been diagnosed with intracranial hypertension via mri because my otolaryngologist was looking for a pituitary tumor. I get terrible headaches, constant ringing, all kinds of weird vision problems and I swear they’re going to wait until I die to care. I can’t even get into a neurologist. I’m on Medicaid and apparently I deserve to die or something because of that.
Girl me too, I’m on Medicaid and it feels like no one gives a shit lol. I’ve had an mri but it’s clear yet I still have headaches every single day. I’m suspecting I have IIH
THANK YOU!!!!! You just gave me the confidence to stand up to my doctor. I've had "chronic tension headaches" for 14 years straight now. Every single day...Just like you said, I can't remember what it's like to not have a headache. God bless you!!!🙏🙏🙏💕💕💕 I hope your treatments are a huge success!!
I'm glad to hear that you got the right diagnosed. I had been suffering with migraines that mimic strokes after 2020 (after getting covid). The headaches had been more sever but after two neurologist no luck. I was seen you with your seizure. me are similar too, I lose my speech and mobility. My face twitches i could hear my eyes lids closing and opening. I changed my neuro last year. He did some epilepsy study. He told me I don't have epilepsy he told me that I suffer from severe headaches. My headaches last one whole day or three or more. I had not been able to see the doctor I only see his PA. I'm so tired and fistulated not knowing what it is.
I'm SO glad that you got your accurate diagnosis. I've been having to fire doctors for about 5 years now to just finally get answers recently. I struggled with people around me not understanding why I wasn't adapting to my new life and I constantly have to explain that you can't adapt to what you don't know or understand since it's constantly changing (symptom wise). Thank you for being a beacon of hope for those of us with chronic illnesses. Please know your wise and kind words change lives daily.
I couldn't agree more with you. For me it also feels like there's a fine line between accepting an illness and giving up hope of maybe one day finding a diagnosis and it can be very hard to explain that to people who don't deal with chronic illness.
I've had stomach issues for 10 years, but because of my mental disorders I haven't had the energy to keep pushing when doctors don't care. It's easy to tell someone "it's just mental" when you actually DO have chronic mental illnesses, but that doesn't mean you can't have physical disorders too! I decided definitely a year ago to stop seeking more help for my stomach. The pain of constantly being told I exaggerate or that "it's normal" when it's clearly not, made me decide to rather endure the symptoms I have than endure the mistreatment from all the idiot doctors. So whatever I have, will never get better. And I'm too tired to seek more answers. I eat a very restricted diet, take 3 esomeprazole a day, which is a very high dose to take continuously, but it works and I avoid all the depression and self-hatred that the doctor's that mistreatment me bring. This spring I even had chest pains that came and went for a few months, I didn't seek care. You "should", but I couldn't handle another doctor belittling and insulting me to my face when I seek help with a very real potentially life-threatening problem. And I mean, I'm still here. So it can't have been heart attacks. It's SICK that the health care is more painful to endure than your symptoms, so you just deal with your symptoms and hope you won't die. I mean, I'm anxious all the time anyway, fearing a heart attack isn't that bad...
You should be shouting I told you so. Doctors can’t handle smart patients especially women who question them. You articulate yourself so well that you obviously were questioning their diagnosis. I am so happy you stood up for yourself and continued to fight. Cheers to you.
I often wonder about these patients who struggle to get a diagnosis/get misdiagnosed. Like what if they went back to their original doctors and throw their diagnosis in the doctors’ face(s). Like what would these doctors do?
I’ve been here since the beginning of this channel and the whole time my brain has been SCREAMING “something doesn’t line up, this sounds scarily familiar to EDS/HSD and the comorbidities (like chiari malformation, IIH, tethered cord, cranio cervical instability, etc) of EDS/HSD” and I’m so SO proud of you and happy that you’re on your way to figuring out exactly what is going on and how to treat/manage it. Flynn and I are Sending you all our love and hugs from Nashville ♥️
I'm so glad someone on your social media pointed you in the right direction. Five years ago I discovered I had anapaestic large cell lymphoma and I only found out because someone on FB, after listening to my symptoms, told me the tests I must insist on getting. Prior to that I'd been throbbed off and told I had Functional Neurological disorder and after that diagnosis, no doctor was interested in me. This of course delayed my treatment for a very aggressive cancer. I had the tests privately in the end, but even then the specialist told me that he thought I was worrying about nothing! From what has happened to so many of us, it's proof we have to be our own health advocates. Sometimes, a fight with your doctor is quite literally a fight for your life.
I have the same problem with the chronic daily headache. I wish there was a light at the end of the tunnel on this shit but nope year after year nothing but pain you can barely distract yourself from and after work good luck being social. Ugh god bless and keep fighting the fact you have kids gives me hope i'll find the way too some day
I understand you completely. Noone would really understand unless they going through these problems. It's just not another headache.. .. people go on disable mode for the whole duration of the chronic migraines they going through. Medications don't work lots of times and people dying in their bedrooms or restrooms disabled ( speech, walking, disoriented etc)..
This channel is such a source of hope for me. Over four years ago I suddenly became dizzy and it didn't stop for about 4 months. I've been struggling with vestibular problems ever since, including brain fog, fatigue, vertigo, disequilibrium, ear fullness, and tinnitus, and was also diagnosed with migraine. I've been to lots of doctors without a consistent diagnosis and, like you, was passed over once a 'conclusion' was reached. Because of this channel I investigated NUCCA, finally got a scan of my neck, and am currently seeing a specialist chiropractor to fix my misaligned C2 and C3 vertebrae. Thank you for all your effort in making these videos - I know too well how hard daily life can be with a chronic illness and doubly appreciate how much you've invested in this channel. I hope your road to recovery is short and smooth!
I started watching you little over two years ago and I want to say THANK YOU! Two years ago I was also only diagnosed with chronic migraines. I started watching you because it made me feel better that there was someone else that struggled to cope with all the craziness. We are also both in the science field too. :) I went through nearly 10 doctors and a surgery to get to my current diagnoses. I felt absolutely crazy, all my symptoms were so varied and situational that most of my doctors thought I was over fixating on my body. I KNEW something was wrong so I ended up kicking most of them to the curb. Even traveling more than 200 miles around me to see doctors that would listen to me. I learned that a doctors opinion of me is not my goal, getting to the bottom of why my body is doing something is my goal. Let it be said on my grave that my doctors thought I was crazy, but I lived a long healthy life. It's better than she died too soon, if only she knew what was wrong with her. I have a complex case of intracranial hypertension that took nearly 7 years to diagnose. I have EDS which in some small cases causes Eagle's syndrome(styloid bone overgrowth). The bones from my Eagle's are pressing down on my carotid artery and my jugular vein causing the intercranial hypertension. Which was causing cluster headaches not migraines. I also had tachycardia that landed me in the ER a few times. There is a silver lining! I have a surgery scheduled for this December to remove the bones which should clear up all the intercranial hypertension. I wish you and anyone who reads this all the luck in the world for their health!! TL/DR I have Eagle's syndrome that caused my Intercranial hypertension. It's easy to check for, only need a CT of the neck.
Hi, I'm actually 17, turning 18 in a few days and I've had migraines 24/7 for all my life and I just wanted to say thanks for this video for shedding light on this possibility. I have my A-levels soon and it's been difficult for me to focus and this condition has severely inhibited my academic capacity but thanks to this video I have some more insights on what could be the case for my headaches so I'm closer to treating them however after being referred to a neurologist by my GP, the nearest appointment I could make is in 10 months!
I have no idea what to do with what I have. I have many symptoms, and it scares me; they come and go mysteriously. I'm afraid of developing a serious complication. I've been experiencing strange symptoms and getting sick easily for three years now, and many things are not right. I fear for my life every day. I will soon see a neurologist, and honestly, I'm desperate to be properly diagnosed or at least receive an answer. Everything is so confusing, and it overwhelms me so much. It's a difficult battle. Thank you so much I learn a lot with your videos and feel less isolated.
Omg I cried when I heard you say it. I have chronic headaches for 20 years and a slew of other medical problems. Sometimes they were so bad I couldn't do anything. It's gotten better last 5 years but headaches are still daily. My doctors don't care, they just ignore me talking about it. Two years ago some of the diagnoses started to pour in. I got diagnosed first with hypertension and tachycardia then ADHD then coxarthrosis and Raynauds then ocular hypertension then ASD then allergies and then celiac. I really hope someone will listen to me now. I have a theory I have IIH as well, maybe secondary to hEDS. But first I have to wait to be sure my joint pain is not actually due to my celiac. Anyway congratulations to your diagnosis! And fingers crossed, I wish with my whole heart you will keep getting better!!! ♥🧡💛
That’s terrible! How did you get diagnosed with these btw? I have Medicaid so my insurance is shit and I wanna be able to be my own advocate and ask WHAT I have because I have headaches every single day ALL day and my MRI is clear
@@noellealdi881 So I still don't have diagnosis for headaches which is my biggest problem in my whole life probably. My MRI is "clear" too 😔 If you have the record from the MRI, you could take to another radiologist to read for the second opinion. Different doctors *might* read the same record differently. I didn't do it yet but one day I will. I am so sorry about the system you have in the US. I live in Czechia, EU. Our system is not great but at least it is accessible to everyone. I have one advice - if you feel your doctor is not listening to you, change them if you can. Try to persuade them once or twice and if they will not start, try to find another one. I have a playlist "How to talk to doctors", there are some videos that helped me. Maybe it would help you to watch them too. Best luck 🍀🤗
@@kikitauer thank you so much! I’m gonna ask for a spinal mri because I also have rheumatoid arthritis and it could be affecting my spine….. but I’m so scared dealing with these headaches, I’ve taken ibprofen almost everyday for two years now and am at risk for stomach ulcers or worse. Some of the BEST advice I can give you regarding your own headaches is diet change…. I learned from a doctor that 90% of the time it’s your gallbladder and you need to cut out gluten (amongst other foods) but definitely get on the CLEAN KETOGENIC DIET. Look up Dr. berry here on TH-cam and watch what he says about headaches and keto diet solving it, there’s thousands of people that have cured their headaches by this simple change. Unfortunately it didn’t work for me because I’m that few percent where it actually is a disease most likely, but the ketogenic diet did really help me with the pain.
I'm so happy that I found your page honestly I feel like I'm going through very similar situation I have been dealing with the gas lighting for a few years now since I got diagnosed with multiple auto immune diseases but the scariest part is I Have had this extreme pain in my head for over a month now I also Lost my hearing in my left ear I've been really struggling It feels like no one will listen to me It seems like everyone is looking at me like I'm a liar or like I'm making it up for Attention it has been such a struggle honestly I never thought I would go through anything like this some days I don't even know how i will make it through the only thing that keeps me going is my children If I did not have them I would have gave up by now it has been so hard it's exhausting A few doctors told me they thought that I had TMJ and I just really don't know what I have all I know is I feel awful like I might die any day now and honestly My health anxiety is so severe because for the 1st year they told me I didn't have anything wrong with me and turns out all my auto immune disease labs were positive and I infact had multiple autoimmune diseases Because I am 34 years old and I do not look sick They treat me like I am crazy prayers for you god bless
I'm so glad to see you've finally found a direction to go and a doctor that listens. My mom went through this in the 80's and 90's for Ehlers Danlos Syndrome. Because SHE fought that fight and found answers, my brother and I have answers and support. You're doing the right thing for you and for your baby.
So happy for you finally getting answers! I'm currently going through the process of getting answers after fighting with my doctor for 3 years. It's such a long and tiring process, but it's so worth it
You are a rock star. I just started with your channel because I have migraines and I'm looking in to a service dog, and at first I was like "this woman is explaining what's going on in my head!". But I quickly went from that to "this woman is going through what I'm going through, only multiplied by a thousand percent". I've been on the receiving end of a rubber stamp doctor's care, and I know the feeling of "am I crazy? do I just need to shut up and listen to the doc?" but in the end, doctors are highly trained - but also fallible - people and once you realize that you can begin to really advocate for better care and treatment options. The crazy part of your story is that you had so many serious symptoms for so long, and they were getting worse, and it still took you firing multiple doctors in a row to get to the one doctor with a similar history of misdiagnosis which equipped her to look for the root cause instead of the easy symptom match. Congrats. You're my new hero
I love to see your HUGE victories such as contributing to conversations, finding “new” words etc! I have post covid brain. I don’t feel like they are true migraines but are being treated kinda sorta similar and I needed your misdiagnosis video today. I’m so sorry that this has happened to you! Please know your non-linear journey IS helping people! Thank you ☺️
So much of this is reminiscent of my own experiences. When I was in high school I woke up with a headache/migraine that didn't go away for 3 years. It wasn't until 2 years into this suffering, numerous hospital stays, and 5 months of missed school, that I was diagnosed with NDPH (New Daily Persistent Headache) which had no really effective treatment, as well as Psuedotumor Cerebri. At the same time I was also diagnosed with Fibromyalgia, IBS, and Stomach ulcers, but was totally treated like a hypochondriac by medical professions overall, and I was still a teenager so I was easily dismissed. Fortunately, I went into spontaneous remission from the NDPH and the Pseudotumor Cerebri, but in laters years was diagnosed with POTS, NMH, and finally EDS. In the context of EDS all of my numerous diagnosis's made sense. Now I'm 30, and more symptoms have come up since then. I have an implanted mediport for saline infusions, use a cane daily, and am on numerous medications that help me get through the day. Having the EDS diagnosis has made all the difference in my medical care though, since a genetic condition gets taken seriously. I would encourage you to look into EDS as a possible underlying mechanism for your conditions. I hope this helps and wish you the best of luck on your journey!! Keep advocating for yourself and for your children (and future children) - having a diagnosis is the best gift you can give them and yourself!
My friend has a pseudo brain tumour. They put in a shunt because of too much fluid in the brain. She’s had fluid taken out as well by way of spinal tap. Eye doctor discovered her illness when he did an eye exam and saw the pressure in her head by looking in her eyes with a scope. Meds worked for a bit then they stopped working. I hope you and your doctors have better success then my friend.
I’m so happy and SO proud of you! Cried through you saying all the differences you’ve noticed so far because you deserve it so much and because I’m so hopeful for that for myself. Currently a week out from my second spinal patch for my leak. They’re also questioning IIH (I have EDS & POTs also), but they can’t diagnose it or really work it out because I’m leaking so much. Enjoy all these improvements and celebrate them, they are HUGE!
I identify so much with a lot of your symptoms. I've only seen one neurologist who quickly diagnosed me with migraine despite the new vision loss (permanent, not just before I get a migraine) and my description of the confusion, vocabulary loss, and trouble performing stepwise activities that I experience. I brought up my concern about the permanent spots in my vision again, and she said that she thought it was a form of ocular migraine. I'm so disheartened and exhausted since I have already been to doctors and hospitals so many times in the past few years for ovarian cancer and hormonal issues. At this point, I'm not sure if it's migraine, or EDS (I also have hypermobilty), or pseudo tumor, or IH, or hormone imbalance, or what. But I have no more resources (time, energy, willpower) to go through the rigorous journey of getting to the bottom of my symptoms. I'm so tired, so in all honesty, I'm just going to suck it up and have my bad days and have my good days until or if something more serious comes.
I'm so glad you got this answer! BUT I will say, this condition still has a root cause, and I'd be willing to bet it's in your connective tissue/hypermobility.
I'm going through the testing phase now for my migraines almost every night. Although my symptoms are not nearly as severe as yours I know how frustrating it is dealing with doctors and the medical system I hope and pray you will get better soon May God bless you and your family
I’m glad you are finally getting some answers. I suspected for some time that you were experiencing head pressure issues because of your frequent scratchy voice-a common symptom with high pressure. I have Chiari and IIH. In my case, a good neurosurgeon gave me my life back with a shunt/anti-siphon device that was right for me. I was checked, and I am not a candidate for stents. Back in my 20s, I was told it was all in my head. Eventually, a good eye doctor sat me down, told me everything I had been told before was wrong, and I needed a brain MRI. Well…it was all in my head, but it turned out I needed a few brain and spine surgeries. Now, I have been back to school, got a masters, and am off disability. There is hope!!
Thank you. This has given me some hope. I’m going through similar in the U.K. I am diagnosed as having EDS, POTS, bipolar and anxiety. I have had a constant headache and stiff neck (severe neck pain) for around 3 years now and have suffered from migraines for about 15 years (I’m now 29) at the beginning of the year I was rushed into hospital with a severe seizure like episode (40• temp, 180bpm and full body tremors that were on and off every 10 minutes from 8.30pm till 5am) after 5am everything cleared up but I was left with a pounding migraine and difficulty walking at all unaided for around 2 weeks, this was dismissed. I now have visual snow, blurry vision (normal eye tests), tinnitus, vertigo, balance and walking issues since then. I also have had a few episodes where I was rushed into hospital suspected of having a stroke. Migraine with aura and POTS being blamed and after battling with my doctors I now have the diagnosis of neck instability and upcoming investigations (mri). I do feel I have a fluid leak as I have a lot of the symptoms, CCI and potentially Chiari malformation. I also wonder as you said you suffer with hyper mobility whether EDS had been looked into for you? I know a lot of these issues are common. I also have children, 4 and 5 and really want to get better for them 💛 I wish you the best
Glad you got your hypermobile type Ehlers Danlos syndrome properly diagnosed! It took me until age 38 before I was diagnosed, although a doctor suspected it when I was 21. The hEDS diagnosis was super helpful, since it was a unifying diagnosis to explain all of my health issues and was able to guide my doctors to better treatment options. Near the beginning of this video, she mentioned something about having hypermobility, so I wouldn't be surprised if she ends up being diagnosed with hypermobile type Ehlers Danlos syndrome as well. Most doctors don't know enough about it, though, and often get hEDS confused with the 13 other types of Ehlers Danlos syndrome and the related collagen-based disorders. When I was 21, the doctor who was supposed to screen me for hEDS screened me for Marfan syndrome instead by mistake.
@@Truerealism747 I'm alive, but that's about it. The delayed diagnosis allowed time for damage to happen to my body, mostly with my back. I got a surgery at age 26 that the doctors ever would've done, had they known I had Ehlers Danlos. The surgery caused a lot of complications and a very long recovery period.
Im so so so glad you got these answers!! This is such a HUGE problem, us not being listened to, our concerns not being addressed. We deserve better. Keep self advocating and if you cant, look for someone who can advocate for you. You and I deserve this.
@MommingwithMigraine Wow! Very happy they finally got to the bottom of what was causing most of your illness. IIH was one of those things where there was like, two or three sentences in our paramedic textbook and that was it. You're the second person I either know/am friends with/or follow on social media that has been diagnosed with IIH, and had a lot of the same symptoms I've had. Thank you so much for sharing! You've helped encourage me to research this further and better advocate for myself. Having "top" neuro docs repeatedly dismiss your symptoms and just push pills is so frustrating. Been there done that with being prescribed meds with potentially dangerous side effects and not being warned. Topiramate, Sumatriptan, and now Nortriptyline.
Thank k u for sharing-took me a long time and many drs to find that my epilepsy could be cured with a surgery and now I am am battling serious headaches and gut inflammation-so looped with each other-I have now seen 13 different Dr’s-and I actually feel I had a light bulb moment at the appt last week 🙏🏻🙏🏻🙏🏻 never stop fighting for you!!!
Anyone been diagnosed with Meniere's Disease, later to find out it's actually CSF. Been dizzy, off balance for 2.5 years, 24/7 tinnitus, intermittent head pressure, ear fullness.
I have had 24/7 migraines, tinnitus, visual aura, and recurring olfactory hallucinations, since birth. I was misdiagnosed until I was 48! Doctors told me it was all sorts of things such as hyperglycemia and other issues. A new doctor at 48 finally told me it was migraine and put me on flunarazine. The drug changed my life for the better, but I still have all of the symptoms 24/7 at a low level. Which makes me think that I have another issue. My sister has MCAS. POTS is in the family. So at this point I don't know. I did research and even Intracranial Hypertension has similar symptoms, but I had this when I was young and really skinny. Everything that I read on IH says that the symptoms go away with weight loss. However I don't trust what most doctors say. I am happy for you that you finally got a diagnosis, your symptoms are way worse and more varied than mine.
Rccx gene theory autism ADHD heds causation chronic migraine but in upper body now no headache I've had pots lost my mum.ti severe ms heds father as adhd surely and cfs
Thank you so much for making these videos. I don't know if this is also what I have but this is giving me the fire to push my doctors more. My headaches started 9.5 months ago on September 15th (5 days after you made this video omg) just out of the blue for no reason. At first they only lasted a few hours and would go away but they very quickly got longer and more frequent and I don't think I've been without a headache in about 7 months now. And I've felt like such a hypochondriac this whole time but I know in my gut that something's really wrong. I've seen so many doctors at this point and it's like they don't even listen to me. At first they said it was stress, then migraines, got a normal CT except for a huge sinus block, they said I bet that's causing you a ton of facial pain and headaches, had sinus surgery. Nothing changed. So then I went to a neurologist and he talked to me for like 2 minutes before he decided I have occipital neuralgia and I could walk out of the office pain free with some nerve blockers. I got them and felt absolutely nothing. No medications help, they can only really take the edge off. Luckily I'm going for a follow up in like 4 days to tell him that no actually none of that helped. My mom decided she's coming with me to help push for answers. I'm so sick of this I can't believe you've had it for over a decade. I wish someone would actually listen to me.
I’m going through something similar, I’ve always had migraines and never realized this could be a symptom of something underlying. Thank you for sharing your story, I am getting a colonoscopy tomorrow morning. God bless you
Jen, wow running into you again.. so happy you're getting some answers and hope and improvement. Giiiiirl you're an inspiration and a great mom. Congrats on all the new life in your life ≤3
Over the past couple of years, my chronic migraine symptoms have been getting progressively worse. I probably wouldn't have done anything about it if it wasn't for this channel, but now I am carefully tracking everything (because my main symptom during an attack is forgetfulness), and am planning on setting up the necessary appointments to see what can be done. Thank you for this channel!
I have suffered with what you were talking about for years and they treat you like absolute crap! Like you’re a crazy person, like you don’t know what pain is, like you don’t know what a real problem is it is awful. You just helped me make another doctors appointment, I think I am going to address at first occipital neuralgia and cervical spinal stenosis and then I’m pretty sure on top of that. I have what you’re talking about as well. I’m pretty sure I have a couple of terrifying things together. It’s awful that they let me be untreated.
Wow, thank you so much. Your cognitive function is coming across good. I've had migraine where for 4 years brought on by light and screens. I'm still untreated because the meds interact with my amitriptilyn and high heart rate. The last surgery tried to say it was all mental health. Well constant migraine is enough for anyone after 4 years. I get shocks go through my lobes. I find I cannot have a conversation really not a deep one. I also rabbit on (talking ) this is due to the basil ganglia activity in the brain. LL NERVOUS SYSTEM RELATED. Sorry for caps. I feel less mad now thanks. I. Aware I could end up having a stroke or something. It's not anxiety it's brain stress from constant migraine.
I was born with Hydrocephalus and that means that cerebral spinal fluid builds up on the brain and like others my body can’t drain it off without a device called a shunt. I was fine until 6th grade (so 2012) I started having a headache that wouldn’t go away… Ever! I had had my shunt replaced multiple times and nothing… Well in 2014 I got the shunt replaced again and for the first time in two years I didn’t have a headache and I was headache free for eight months. Then unfortunately it came back and I’ve had it ever since. I started hearing about New Daily Persistent Headache (it’s a migraine disorder) that is rare and there isn’t a whole lot of research on it. Unfortunately there isn’t a cure and sometimes it just goes away for some people, but others are stuck with it. I’m getting Botox starting on the 10th of November and I’m so grateful I kept pushing it with doctors and my family. I’m so happy you’re still fighting. I’m so proud of you! God bless you and your family. Ps before you said “keep fighting” I wrote the comment above and I wanted to mention that I have a tattoo on my forehead with three simple letters AKF… Always Keep Fighting.
I was diagnosed with IIH/Pseudotumor Cerebri in 2011. I did do the LP, and it caused the WORST HEADACHE OF MY LIFE. Topiramate was a nightmare. It was a huge breakthrough, but it didn't explain all my issues either. Ultimately, my diagnosis was hEDS. I have mentioned it before, but it bears repeating. It is beyond my ability to understand how someone can be BORN with a condition and not be diagnosed until age 40. I'm pulling for you lady.
It happens all the time I was diagnosed at 33 with chiari malformation, 9hrs of neurosurgery but 25 years on I'm still hanging on. Support groups on the web and annual conferences for fellow patients and family are so important. I never could understand folks that complain to their GP instead of reaching out to a teaching hospital those resources really do look to solve medical mysteries. (SHOUT OUT TO MGH) Being proactive is a must. Jen might have saved herself some aggravation with an L&P. So glad she has some piece of mind, hopefully she finds some relief.
My hypermobile type Ehlers Danlos syndrome was delayed about that long, too. One of my doctors thought I had it at age 21, but the doctor who was supposed to screen me for it was clueless and ran me through the criteria for Marfan syndrome instead.
I love to hear someone say they get migraines too and what they mean is a head ache. I have had a migraine every day since Sunday and just hoping today it wont hit.... I get the auras and about 3 hours of hell before it goes away until the next day. Normally I get them once a month or so and lately I have no idea what is going on. I am not stressed, have not changed food or anything so next step for me is remove everything and start over.
Was headaches your primary symptom? Or were other things involved. Cause I have headaches every day all day and joint pain in my knees but I don’t know what I have
I'm so happy that you can still do the web and care for 2 babies! I was in similar situation, DK if it was 5 yrs or more...IIH, pseudotumor...Had a stent inserted March'23. Anyways, I realized, I stopped crying much about 10 yrs ago, but when I cry -seldom-It really feels much better, I think the release of fluid by tears is a good think. So my advise - cry if you can....
I have IIH and had chronic migraines and aura's for about 17 years before getting a diagnosis- I almost died before I got it. I had to have a lumbar puncture to confirm mine (opening pressure of 28). At the time of Dx I had hallucinations, intensifying headaches daily that were mind piercing, drenched in sweat, had vertigo, my bp was 230/130, my speech was slurred, and I couldn't walk or stand straight. This was Dx in 2017 and I nearly had a stroke before they did the emergency lumbar puncture. I also have hypermobility because I have Ehler's Danlos Syndrome. With both of my pregnancies with my daughters I had polyhydramnios- which I'm convinced is because of EDS.
I’m brand new to this channel (this is the second video I’ve watched) so you might have addressed this before, but have you looked into Ehlers Danlos Syndrome? I have it and many of your symptoms are similar. Not everything you discussed could be under that umbrella, but the Hypermobility, POTS, and even the migraines are all common symptoms. EDS is often comorbid with other diseases snd disorders so it’s possible you could have it in addition to your neurological problems. If you’ve already discussed this, ignore me! But it took me seven years to get diagnosed and it’s rare enough that most doctors don’t know about it so I always mention it if I hear of someone with EDS symptoms.
I can relate to this so much. You are amazing for not backing down. I took me 30 years to get a diagnosis of EDS, with PoTS, Migraines, Gastroparesis, CCI and many other things, but that was only because I did my own research, left to the doctors, I'd still be undiagnosed, but, I too have a missing piece of the jigsaw puzzle, and I really think it is High Intercranial pressure, but, my neurologist won't listen, and I'm getting so exhausted of the fighting, and I'm not sure what to do next. I hope my fire awakens again soon and I keep fighting, like I used to. Can I ask, what are the changes you've made please, apart from not having salt now? Sending loads of love to you and your family, and many congratulations on baby number two! Xxxx
Glad you were able to get diagnosed, and I hope you're doing better and are finding the right treatment options. I have hypermobile type Ehlers Danlos syndrome, which causes POTS, gastroparesis/IBS-C, migraines, and a bunch of other issues. My doctor put me on the non-stimulant ADHD medication Clonidine (or Guanfacine) at night to treat my POTS, anxiety-like symptoms, migraines, insomnia, and restless leg syndrome. This type of medication signals the body not to dump so much adrenaline and norepinephrine into circulation, which calms the "fight or flight" response and directly counteracts hyperadrenergic type POTS. My doctor also put me on the popular EDS medication Pyridostigmine during the day to treat my gastroparesis/IBS-C and to further treat my POTS and fatigue. This one stimulates the vagus nerve, which is in charge of the "rest and digest" functions, while also aiding the muscles which move food through the entire digestive system.
I was almost diagnosed with a pseudotumor cerebri, everything matched except my eye muscles were so swollen my eye was stuck in a down position. But if your pain was similar to mine, it’s unexplainable how bad the pressure and sharp pain ausea can be. I’m sorry you went thru that. My diagnosis is actually idiopathic orbital myositis and I was diagnosed by a neurological ophthalmologist, it was a fight to see him. I’m glad you advocated for yourself, idk why the YT algorithm sent me here but. ❤️✌️
I am so glad you came to the realization to trust your gut and what your body is telling you if you aren’t convinced the drs have it right. I have had many experiences when this happens, because at the end of the day, you know your body better than anyone! And I’m not saying not to trust doctors, but if your gut is telling you something different than they are, it’s always good to dig in further. You may have already noticed that the same thing happens when your daughter gets sick… Mamas get that instinct for their children too!
It’s insane that your new diagnosis is the reason I started watching you in the first place. Migraines are secondary to POTS syndrome, which I have. I recently started getting migraines because of my POTS and found your channel! Wow! Crazy discovery
Also I went 3 years with syncope episodes and other various POTS symptoms that doctors under diagnosed for me as well. I was initially told it was all in my head for 3 years and it was just severe anxiety!
@@itsmonday5762 That happened to me, too. Since the hyperadrenergic POTS is overactivity of the sympathetic nervous system ("fight or flight" panic and anxiety response), that often confuses doctors and leads them to misdiagnose it as anxiety. The POTS medications Pyridostigmine during the day and either Clonidine or Guanfacine before bed have mitigated my POTS, migraines, digestive issues, and other issues really well. Each person is different, so what works for me might not work for others with the same issues.
I'm sorry to hear of your ordeal have been dealing with severe headaches for 17 years had two suspected seizures in the night. Id one normal eeg but got jerks during night and woke with horrendous headaches think they are connected the heafache is one that no painkillers would take away. Like yourself I'd like to know the root cause and that you can get better. Currently taking topamax. Symptoms are unfortunately still bad enough but night symptoms are gone. Best of luck on your journey. I'm meeting a neurologist on the 5th in hope they can find a root cause.
I don't know what possessed the TH-cam algorithm to show you to me a few months ago, but I'm so glad it did! Thank you so much for that truth at the end. About taking breaks to regain energy, but still fighting. I'm in the middle (at least I hope it's the middle) of this right now. And it's exhausting. But I need better for myself. And my husband. I've got a pretty awesome support team, and I'm glad you're around to encourage from afar. Congratulations Jen!
you talking about people brushing off your problems always hits hard, because i've been so bloody brushed off by doctors for years. it feels horrible and i don't wish it on anyone. i'm so happy you're getting the care you deserve after all this time and i hope you'll just get better and better from now on. we're all here cheering you on.
I totally thought you had vascular EDS even now the symptoms actually fit even the symptoms that I didnt know till you mentioned them today fit even high brain pressure fits ......wow I feel for you
🦋I'm proud of you Jen! For continuing your fight for answers even through adversity. I have alot of migraine issues and none of it makes sense...I've even thought I'm hypochondriac or hyper vigilant, or I have anxiety...What you've proven to me is finding a neurologist who listens is a tough battle, but it can be done. 💪👍 PS- I can see that night and day difference in you ...that's amazing! 💕
@@MommingwithMigrainehow did you get your diagnosis btw? I have headaches all day everyday for two and a half years now and my MRI came up clear. I’m just not buying “chronic daily headaches” I really believe there’s something underlying, my insurance is shit lol I have Medicaid. What shocks I say when I go to the doctors? What do I ask and rule out?
Buddy still alerting to fainting or Migraines? Ok, dumb question. Of course he is. You're obviously having (at least some) success with things you've implemented, IIH can be treated or fixed, correct? Will you be able to get your life back on track (however that may look like), return to work if you want? After the baby is born, is the doctor able to map out any certain time frame on "recovery"? Boom! 56943.751 questions are assaulting me! I'm happy to know you're making headway in this part of your journey! I'm also happy to get to know Jen. You are an awesome human and I adore you. The last part telling us you're using more words, you are rocking self awareness right out the roof! I'm thrilled with what you're willing to share. Thank you for being you 💚💙💚💙💚 hold on tight, surely things will keep improving! 🙏 "Cooking up a storm"... yes yes yes!
Yes he is still alerting! Treatment options and prognosis vary for each individual... I'm pregnant, so I have to exercise patience and enjoy my small (big) wins in the meantime. Thank you so much for your kind words and support, this comment was straight FUN ❤
I NEED help here too chronic daily migraine with the most nightmare cranial pressure head and ears. No help from specialists or neurologist. How do they measure interracial pressure pleeeease??????? Even my eyes do painfully and swell and bloodshot all time. I get to wear I cannot talk or get words I walk around confused lost or lay in bed brain dead. I have have so much tachycardia episodes the past 1-2 years but never before in life. Noraml blood pressure for me is very very low. I feel like I'm a anyerism or something waiting to happen. Or wait for them yo say u have brain tumor or cancer and sorry it's already spread. Or shoe from stoke or seizure. I am extremely barometrically sensitive Amy change of drastic barometric weather spikes and especially high humidity and rain I'm like a bird disoriented in a storm. In excruciating pain including face amd sickening nausea. And tinnitus
Connective Tissue!!!! Hypermobility migraines POTS- brain pressure, seizures...all possible of EDS. It's rare and there is no cure but it provides answers. I'm sent to the ER everytime and it's still a battle but its knowledge
This is exactly what happened to me after covid. I have pushed for 2 years with new peripheral vision. Was told ("you've always been like that, migraines"). I am now at the point of Cushing's Traid after a spinal tap injury/leak (12 months ago).
I’m only ten minutes in but I’ve been a sub since you had less than 1K subs I believe and I needed to say thank you for this video. Semi-long thank you rant incoming: I have been having chest pains for around 6 months now ever since my heart had a bad reaction to my covid shot that landed me in the hospital for a bit. (I had elevated blood pressure being treated already. Not blaming the shot, get vaccinated everyone). Ever since then I’ve had chest pain that comes and goes sometimes more severe than others. I’ve had an echo, an X-ray, a stress test, and a heart monitor for a week. All my cardiologist said is “well you might be having chest pain but it’s not your heart” and that answer doesn’t sit right with me since i can literally feel my heart. Idk if you’ve ever been able to FEEL an organ just sitting in your body, but it sucks. I’ve been considering finding another cardiologist that is less dismissive and this was just the push I need d. Thank you Jen!
Saying a prayer for you, I hope you get a diagnosis and full recovery and rehabilitation. Hang in there and keep fighting to be heard. Jen said her doctor listened because she has been in her shoes, it may take unearthing a doctor who has been in your seat as well. Best wishes and blessings for you! 💚
@@deannar.7670 I've had this too! It's awful - during a flair up one of the paramedics in my life took me to the hospital because HE thought I had a heart attack.
That sounds similar to what happened to me. I had pneumonia twice in 2015 (that sucked so much) and developed episodic heart attack-like symptoms where it felt like my sternum is being cracked open and I can barely breathe - probably costochondritis aka inflammation of the membrane between ribs and lungs (sometimes caused by a viral infection). My doctors have said it is usually a comorbidity that piggybacks on autoimmune illnesses.
Jen, I’m speechless. Way to be proactive about your health and body! It’s an inspiration to see someone who overcame so much. Keep fighting the good fight and may you have many wonderful blessings ahead! I can’t want to see your future videos where you describe more and show us progress!
I started having headaches beginning of last year, at first I started to be a little dizzy now I’m fine it hurts on one side of my head sometimes at the back sometimes at the front, I can relate but mine slowly slowly went away over time but came back this year it’s gotten better but I don’t the reason for it I’m only 12 and I started having these headaches when I was 11 I noticed body changes so it could be hormonal? Headaches run in my dads side of the family like my aunts have really really bad headaches even having paracetamol or Advil won’t make it go away thank god my headaches go away when with paracetamol I’m pretty sure it’s hormonal but it feels horrible sometimes.
Thank you so much for sharing your story, I can’t imagine how hard it was to show yourself at your worst. I am so glad you got the answers you were looking for. And thank you for posting this video, you help so many people. I am one of them and I really needed to hear the message you shared today about listening to your gut and advocating for yourself. I have been struggling with my doctors working towards a diagnosis, and it is a really hard road to go down especially when you feel like your alone. So thank you so much for providing a safe space for so many people. Have a great day :)
I am so happy you found a doctor that listened to you! I have been dealing with worsening chronic migraine for the past 3.5 years, and found your channel last year while dealing with month long migraines with no respite with meds. I also fainted last year after being put on toprimate, and was brushed off by my doctor when I had other terrible side effects with it. It is sad that we have to advocate so fiercely for ourselves, but I am so happy you recieved the correct diagnosis!
My hypermobile type Ehlers Danlos syndrome diagnosis was delayed until age 38. The migraines, tachycardia/OH/POTS, convulsive syncope, and other issues that are all related to Ehlers Danlos syndrome was brushed off as anxiety at first, too. Since the hyperadrenergic POTS is overactivity of the sympathetic nervous system ("fight or flight" panic and anxiety response), that often confuses doctors and leads them to misdiagnose it as anxiety. The POTS medications Pyridostigmine during the day and either Clonidine or Guanfacine before bed have mitigated my POTS, migraines, digestive issues, and other issues really well. Each person is different, so what works for me might not work for others with the same issues.
Way to keep fighting for your self and your family 👏 I had to fight for myself regarding my seizure disorder many years ago So glad I finally found the right doctor. You’re doing everything you can and I am so glad TH-cam has helped you 🥰
@@MommingwithMigraine well I have complex partial seizures and my age of onset was 31. I wanted to “fix it “ whatever it took finally found a neurologist who listened and explored all options. No tumor, no idea why i suddenly started having them (I have my suspicion-worked in an explosives plant for 6 months-think I may have been exposed to something) and now I have been stable with few seizures in the last 25 yrs. but the right treatment plan made all the difference. I learned that if you don’t fight for your self first the first doctor you have might not fight for you.
Dang this is a powerful video! The fight you've had to get this diagnosis has been epic proportions, I'm so glad you finally have a doctor on your side willing to look into things with you. This has come at a great time for me as I am building the courage to swap GPs. My current GP has never been great but recently has been putting all my symptoms down to being overweight, even ones that started way before I put on the weight. He also thinks I am a hypercondriac as he did not know me before I started advocating for myself. I need someone who is willing to explore things with me and understand that I have that gut feeling that this isn't solved by my diagnosis yet. Thank you for your courage to keep going and to share your journey on TH-cam, I know I'm not the only one who truly appreciates your example to keep them going in their own battle
Thank you for your encouragement to keep going back and advocating for yourself when doctors and others are making you feel crazy. It's so exhausting when it takes years to get traction on getting help when you know something is systemically wrong with your body but you are just brushed off as anxious. It's so bittersweet to finally get traction on a major health issue after so long but wonder if they had only listened earlier what grief and bodily damage might have been avoided if they didn't brush off women as just complaining and having anxiety when there is more going on.
Hi i am chronic migraine and most hell off symptom's the doctors have no idea i do understand the hell you are going throw i can't get off the bed or couch you go to doctors can't help you at all thanks for your help
Oh my geez...My cousin...had this...years ago...she went deaf and blind...tho her hearing came back shes totally blind from the pressure on her retinas it destroyed them...glad you caught it... cause back when my cousin went thru all this..they claimed she was making up the headaches the double vision...the passing out.. she found out in her 40s that if they had treated it...when would still have her sight shes now in her 60's but has been blind since she was a teenager. I feel so bad for you.. huge hugs...Dr.s sux...they dont listen to women...at all...Im disgusted by them making you suffer for so long...Huge hugs...much love...
Do you think your cousin could’ve had narrow angles it’s also called narrowing glaucoma it’s a precursor to something that can cause you to go blind if you don’t get treated STAT/ASAP!!
@@Writerdust no she went thru her stuff when she was 14 or 15...she found out years later it was iih..it totally destroyed her retinas at 15...she's now 65...she's been totally blind since she was 15...she's a amazing woman...for all she's went thru ..
I'm so happy for you!!!!! I watched my mum battle a chronic illness when I was a kid, and have to fight so many doctors to uncover a treatment plan that worked for her. She's now in remission because she found a doctor willing to do more testing, more accurate testing, different kinds of tests -- and now I still have her around.
Do you plan to contact the doctors who misdiagnosed you? Might be a good learning opportunity for them, so that others don't have to go through the same thing you did.
THIS. When you are ready, please write your former doctors a letter explaining your current diagnosis, and specifically why you left their care. I would also suggest filing a copy of the letter with your state's medical board. I'm an allied healthcare professional and I can't tell you the number of times I wish a patient had formally informed a doctor of the reason they left. The only way things change is by giving the feedback to they can see their mistakes, though I also understand it shouldn't have to be your responsibility.
I’ll be honest. They probably wouldn’t care. They are stuck in this pretentious, God complex, state. They will probably still continue gaslighting. There is the chance for change. But too often there will not be
FINALLY!! CONGRATS! BETTER LATE THAN NEVER!! ❤️❤️ so curious to learn more about the things you now do that makes all of your symptoms so much better! It's so nice to see you this way! After all these years and months of fighting for a true diagnosis... Glad you got a better one now and that there's things you can do to treat it!!
![[MV] A leap of faith...ความเชื่อใจครั้งสุดท้าย (From "Petrichor the series")](http://i.ytimg.com/vi/U1piZH2CNXA/mqdefault.jpg)
Want to meet the AMAZING doctor who gave me my life back? Interview/Q&A with the POTS doc who diagnosed my IIH: th-cam.com/video/W0fdvz9I9Ac/w-d-xo.html (second half coming this week!)
I’m 17 with hydrocephalus in these two years I’ve had 7 brain surgeries 3 spinal taps and 3 nerve blocks and still am with severe pain whenever I’m upright . I’ve also been misdiagnosed because I had an anxiety attack and after that they blamed my pain on my anxiety. When I was having anxiety over my pain which gave me 3 nerve blocks needles going into all four corners of my head . I didn’t even need them. I’m still having severe head pain . The last brain chest and stomach surgery was in April . And it slowly grew in the daily personal inner torture chamber.
The gaslighting in the medical community is a nightmare. I'm so glad you kept advocating!
It is disgusting. These doctors don't want to admit they don't know. Instead of working with you until they figure it out, they make you feel like shit
As a person experiencing it for 2 plus years now, it really is.
I agree. It's awful. And God forbid they see in your chart you have anxiety, that will become the catch-all for everything they find. I have completely lost faith in our medical community.
This is why we need more doctors who have experienced chronic illnesses and disabilities either in their own life or those close to them. Doctors need to understand what we are going through before they can properly diagnose us. Glad you got the answer now!
I am crying because I found your account. I am currently progressing from a some time migraine suffere to a chronic migraine, with visual disturbances sufferer. I have been progressively getting worse over the last two yrs and no one will take my symptoms seriously. Botox worked for a short time and now it seems to have stopped helping. I’m at the end of my rope 😢 I have a 6yr old daughter and I’m tired of not being able to parent her. 😞
I’m so happy you were able to find a dr who will listen to you.
I’m dying to know the story behind the doctor who actually tested and found the diagnosis😊😊😊 I’m so glad someone finally listened.
I second that!
It would be neat if we could get a interview with that doctor. :)
I agree
.....I'll see what I can do =)
I watch you chanel as I have all the same issues! Have been diagnosed with all the same things. Im definitely having my neuro follow up on this.
Thank you! Keep fighting!
I have IIH and was diagnosed with chronic migraine in addition. It still feels like a battle to have all my symptoms and concerns addressed. I am constantly researching. It’s exhausting. I completely understand your situation.
The weird part of TH-cam. Being so proud and happy for someone who has helped you so much and doesn’t have any idea who you are. I can’t get over how happy I am for you and your family. Your videos have been such a help with my own battle. It’s so great.
"You deserve to have answers, and you deserve to be listened to." It's easy to forget this sometimes.
Thank you for reminding me!
THAT IS RIGHT 👏
I was misdiagnosis with the same thing! I saw a neurologist for years with no help. After going to the ER and the Dr suggesting that might be a possibility and switching neurologists I finally had an answer. I'm glad u finally have a piece to the puzzle.
Oh My God that is literally what my neurologist is concerned I might have! And I have been paying so much attention to your journey in particular because some of symptoms are very similar. I am SO happy you have gotten your answer! I hope I get there soon.
AAAHHH NOOOOO but Mary, I am SO happy your neurologist is on top of it!
You are why she is making these videos.
I’ll definitely be bringing this up to my doctor.
How to you get diagnosed with this? I got an mri but it’s clear so I have no idea how to even ask
It’s horrifying that your answers come from social media instead of the top notch doctors! I literally feel hopeless and seeing my nurro costs allot out of pocket as well as trying things like Botox Becasue it all costs money meanwhile it seems that no one can find the underlying issue but I’m happy your getting some answers finally
I’m so freaked out. I’ve been diagnosed with intracranial hypertension via mri because my otolaryngologist was looking for a pituitary tumor. I get terrible headaches, constant ringing, all kinds of weird vision problems and I swear they’re going to wait until I die to care. I can’t even get into a neurologist. I’m on Medicaid and apparently I deserve to die or something because of that.
Strategies to cope are very limited. Try plant medics. See up my name on lg if interested
Girl me too, I’m on Medicaid and it feels like no one gives a shit lol. I’ve had an mri but it’s clear yet I still have headaches every single day. I’m suspecting I have IIH
THANK YOU!!!!! You just gave me the confidence to stand up to my doctor. I've had "chronic tension headaches" for 14 years straight now. Every single day...Just like you said, I can't remember what it's like to not have a headache. God bless you!!!🙏🙏🙏💕💕💕 I hope your treatments are a huge success!!
I'm glad to hear that you got the right diagnosed. I had been suffering with migraines that mimic strokes after 2020 (after getting covid). The headaches had been more sever but after two neurologist no luck. I was seen you with your seizure. me are similar too, I lose my speech and mobility. My face twitches i could hear my eyes lids closing and opening. I changed my neuro last year. He did some epilepsy study. He told me I don't have epilepsy he told me that I suffer from severe headaches. My headaches last one whole day or three or more. I had not been able to see the doctor I only see his PA. I'm so tired and fistulated not knowing what it is.
I'm SO glad that you got your accurate diagnosis. I've been having to fire doctors for about 5 years now to just finally get answers recently. I struggled with people around me not understanding why I wasn't adapting to my new life and I constantly have to explain that you can't adapt to what you don't know or understand since it's constantly changing (symptom wise). Thank you for being a beacon of hope for those of us with chronic illnesses. Please know your wise and kind words change lives daily.
Speechless.. 🥺😭
I couldn't agree more with you. For me it also feels like there's a fine line between accepting an illness and giving up hope of maybe one day finding a diagnosis and it can be very hard to explain that to people who don't deal with chronic illness.
@@cinnamoon1455 That is SO ABSOLUTELY TRUE
I've had stomach issues for 10 years, but because of my mental disorders I haven't had the energy to keep pushing when doctors don't care. It's easy to tell someone "it's just mental" when you actually DO have chronic mental illnesses, but that doesn't mean you can't have physical disorders too!
I decided definitely a year ago to stop seeking more help for my stomach. The pain of constantly being told I exaggerate or that "it's normal" when it's clearly not, made me decide to rather endure the symptoms I have than endure the mistreatment from all the idiot doctors. So whatever I have, will never get better. And I'm too tired to seek more answers. I eat a very restricted diet, take 3 esomeprazole a day, which is a very high dose to take continuously, but it works and I avoid all the depression and self-hatred that the doctor's that mistreatment me bring.
This spring I even had chest pains that came and went for a few months, I didn't seek care. You "should", but I couldn't handle another doctor belittling and insulting me to my face when I seek help with a very real potentially life-threatening problem. And I mean, I'm still here. So it can't have been heart attacks.
It's SICK that the health care is more painful to endure than your symptoms, so you just deal with your symptoms and hope you won't die. I mean, I'm anxious all the time anyway, fearing a heart attack isn't that bad...
@@SamirCCat have you got a hiatus hernia I had that before my fybromyalgia started
You should be shouting I told you so. Doctors can’t handle smart patients especially women who question them. You articulate yourself so well that you obviously were questioning their diagnosis. I am so happy you stood up for yourself and continued to fight. Cheers to you.
I often wonder about these patients who struggle to get a diagnosis/get misdiagnosed. Like what if they went back to their original doctors and throw their diagnosis in the doctors’ face(s). Like what would these doctors do?
@@livelongandprospermary8796 Probably double down and say that he/she was rushed by patient to come up with a diagnosis.
I’ve been here since the beginning of this channel and the whole time my brain has been SCREAMING “something doesn’t line up, this sounds scarily familiar to EDS/HSD and the comorbidities (like chiari malformation, IIH, tethered cord, cranio cervical instability, etc) of EDS/HSD” and I’m so SO proud of you and happy that you’re on your way to figuring out exactly what is going on and how to treat/manage it. Flynn and I are Sending you all our love and hugs from Nashville ♥️
YUP YUP YUP YUP YUP THANK YOU why did everyone see it but the doctors?!!!!!!!
@@MommingwithMigraine because most of them are blinded by ego or ignorance or they’re just lazy.
I'm so glad someone on your social media pointed you in the right direction. Five years ago I discovered I had anapaestic large cell lymphoma and I only found out because someone on FB, after listening to my symptoms, told me the tests I must insist on getting. Prior to that I'd been throbbed off and told I had Functional Neurological disorder and after that diagnosis, no doctor was interested in me. This of course delayed my treatment for a very aggressive cancer. I had the tests privately in the end, but even then the specialist told me that he thought I was worrying about nothing!
From what has happened to so many of us, it's proof we have to be our own health advocates. Sometimes, a fight with your doctor is quite literally a fight for your life.
I have the same problem with the chronic daily headache. I wish there was a light at the end of the tunnel on this shit but nope year after year nothing but pain you can barely distract yourself from and after work good luck being social. Ugh god bless and keep fighting the fact you have kids gives me hope i'll find the way too some day
I feel you girl. Dr said I had migraines and anxiety attacks. Turned out to be epilepsy. Keeping fighting everyone~
I understand you completely. Noone would really understand unless they going through these problems. It's just not another headache.. .. people go on disable mode for the whole duration of the chronic migraines they going through. Medications don't work lots of times and people dying in their bedrooms or restrooms disabled ( speech, walking, disoriented etc)..
This channel is such a source of hope for me. Over four years ago I suddenly became dizzy and it didn't stop for about 4 months. I've been struggling with vestibular problems ever since, including brain fog, fatigue, vertigo, disequilibrium, ear fullness, and tinnitus, and was also diagnosed with migraine. I've been to lots of doctors without a consistent diagnosis and, like you, was passed over once a 'conclusion' was reached. Because of this channel I investigated NUCCA, finally got a scan of my neck, and am currently seeing a specialist chiropractor to fix my misaligned C2 and C3 vertebrae. Thank you for all your effort in making these videos - I know too well how hard daily life can be with a chronic illness and doubly appreciate how much you've invested in this channel. I hope your road to recovery is short and smooth!
I started watching you little over two years ago and I want to say THANK YOU! Two years ago I was also only diagnosed with chronic migraines. I started watching you because it made me feel better that there was someone else that struggled to cope with all the craziness. We are also both in the science field too. :)
I went through nearly 10 doctors and a surgery to get to my current diagnoses. I felt absolutely crazy, all my symptoms were so varied and situational that most of my doctors thought I was over fixating on my body. I KNEW something was wrong so I ended up kicking most of them to the curb. Even traveling more than 200 miles around me to see doctors that would listen to me. I learned that a doctors opinion of me is not my goal, getting to the bottom of why my body is doing something is my goal. Let it be said on my grave that my doctors thought I was crazy, but I lived a long healthy life. It's better than she died too soon, if only she knew what was wrong with her.
I have a complex case of intracranial hypertension that took nearly 7 years to diagnose. I have EDS which in some small cases causes Eagle's syndrome(styloid bone overgrowth).
The bones from my Eagle's are pressing down on my carotid artery and my jugular vein causing the intercranial hypertension. Which was causing cluster headaches not migraines. I also had tachycardia that landed me in the ER a few times. There is a silver lining! I have a surgery scheduled for this December to remove the bones which should clear up all the intercranial hypertension.
I wish you and anyone who reads this all the luck in the world for their health!!
TL/DR
I have Eagle's syndrome that caused my Intercranial hypertension. It's easy to check for, only need a CT of the neck.
Hi, I'm actually 17, turning 18 in a few days and I've had migraines 24/7 for all my life and I just wanted to say thanks for this video for shedding light on this possibility. I have my A-levels soon and it's been difficult for me to focus and this condition has severely inhibited my academic capacity but thanks to this video I have some more insights on what could be the case for my headaches so I'm closer to treating them however after being referred to a neurologist by my GP, the nearest appointment I could make is in 10 months!
I have them 24/7 44 but changed moved over the decades now in my shoulders armpits 3 years chest before stomach before etc find anything to help
I have no idea what to do with what I have. I have many symptoms, and it scares me; they come and go mysteriously. I'm afraid of developing a serious complication. I've been experiencing strange symptoms and getting sick easily for three years now, and many things are not right. I fear for my life every day.
I will soon see a neurologist, and honestly, I'm desperate to be properly diagnosed or at least receive an answer. Everything is so confusing, and it overwhelms me so much. It's a difficult battle.
Thank you so much I learn a lot with your videos and feel less isolated.
Omg I cried when I heard you say it. I have chronic headaches for 20 years and a slew of other medical problems. Sometimes they were so bad I couldn't do anything. It's gotten better last 5 years but headaches are still daily. My doctors don't care, they just ignore me talking about it. Two years ago some of the diagnoses started to pour in. I got diagnosed first with hypertension and tachycardia then ADHD then coxarthrosis and Raynauds then ocular hypertension then ASD then allergies and then celiac. I really hope someone will listen to me now. I have a theory I have IIH as well, maybe secondary to hEDS. But first I have to wait to be sure my joint pain is not actually due to my celiac. Anyway congratulations to your diagnosis! And fingers crossed, I wish with my whole heart you will keep getting better!!! ♥🧡💛
That’s terrible! How did you get diagnosed with these btw? I have Medicaid so my insurance is shit and I wanna be able to be my own advocate and ask WHAT I have because I have headaches every single day ALL day and my MRI is clear
@@noellealdi881 So I still don't have diagnosis for headaches which is my biggest problem in my whole life probably. My MRI is "clear" too 😔 If you have the record from the MRI, you could take to another radiologist to read for the second opinion. Different doctors *might* read the same record differently. I didn't do it yet but one day I will.
I am so sorry about the system you have in the US. I live in Czechia, EU. Our system is not great but at least it is accessible to everyone. I have one advice - if you feel your doctor is not listening to you, change them if you can. Try to persuade them once or twice and if they will not start, try to find another one.
I have a playlist "How to talk to doctors", there are some videos that helped me. Maybe it would help you to watch them too. Best luck 🍀🤗
@@kikitauer thank you so much! I’m gonna ask for a spinal mri because I also have rheumatoid arthritis and it could be affecting my spine….. but I’m so scared dealing with these headaches, I’ve taken ibprofen almost everyday for two years now and am at risk for stomach ulcers or worse. Some of the BEST advice I can give you regarding your own headaches is diet change…. I learned from a doctor that 90% of the time it’s your gallbladder and you need to cut out gluten (amongst other foods) but definitely get on the CLEAN KETOGENIC DIET. Look up Dr. berry here on TH-cam and watch what he says about headaches and keto diet solving it, there’s thousands of people that have cured their headaches by this simple change. Unfortunately it didn’t work for me because I’m that few percent where it actually is a disease most likely, but the ketogenic diet did really help me with the pain.
I'm so happy that I found your page honestly I feel like I'm going through very similar situation I have been dealing with the gas lighting for a few years now since I got diagnosed with multiple auto immune diseases but the scariest part is I Have had this extreme pain in my head for over a month now I also Lost my hearing in my left ear I've been really struggling It feels like no one will listen to me It seems like everyone is looking at me like I'm a liar or like I'm making it up for Attention it has been such a struggle honestly I never thought I would go through anything like this some days I don't even know how i will make it through the only thing that keeps me going is my children If I did not have them I would have gave up by now it has been so hard it's exhausting A few doctors told me they thought that I had TMJ and I just really don't know what I have all I know is I feel awful like I might die any day now and honestly My health anxiety is so severe because for the 1st year they told me I didn't have anything wrong with me and turns out all my auto immune disease labs were positive and I infact had multiple autoimmune diseases Because I am 34 years old and I do not look sick They treat me like I am crazy prayers for you god bless
This resonates 😮💨 I'm so sorry, I'm glad you found my channel. There are lots of people like us, all different but united. There's hope!
What autoimmune diseases do you have if I may ask? I have autoimmune diseases as well but I’m undiagnosed
I'm so glad to see you've finally found a direction to go and a doctor that listens. My mom went through this in the 80's and 90's for Ehlers Danlos Syndrome. Because SHE fought that fight and found answers, my brother and I have answers and support. You're doing the right thing for you and for your baby.
People have shared their experiences having Ehlers Danlos Syndrome and changing their way of eating to carnivore. Sharing if anyone is interested.
@@w1975byes very interesting I have heds autism ADHD chronic migraines not in head now but upper body cfs
@@Truerealism747 I hope you can find something that helps.
I love that you specified that “none of that is bad, but if it’s avoidable let’s avoid it”
TRUTH.
You hit a homerun with thia video.. Daily Migraines and tachycardia for three years...
So happy for you finally getting answers! I'm currently going through the process of getting answers after fighting with my doctor for 3 years. It's such a long and tiring process, but it's so worth it
Worth it in the end, when the relief comes. I'm sorry you can relate =/
How do you get diagnosed with IIH? Or anything like that because I have no idea what to do 😭
@@noellealdi881 bring up your concerns with a doctor, and ask to go to a specialist. For IIH it'd be a neurologist
You are a rock star. I just started with your channel because I have migraines and I'm looking in to a service dog, and at first I was like "this woman is explaining what's going on in my head!". But I quickly went from that to "this woman is going through what I'm going through, only multiplied by a thousand percent". I've been on the receiving end of a rubber stamp doctor's care, and I know the feeling of "am I crazy? do I just need to shut up and listen to the doc?" but in the end, doctors are highly trained - but also fallible - people and once you realize that you can begin to really advocate for better care and treatment options. The crazy part of your story is that you had so many serious symptoms for so long, and they were getting worse, and it still took you firing multiple doctors in a row to get to the one doctor with a similar history of misdiagnosis which equipped her to look for the root cause instead of the easy symptom match. Congrats. You're my new hero
I love to see your HUGE victories such as contributing to conversations, finding “new” words etc! I have post covid brain. I don’t feel like they are true migraines but are being treated kinda sorta similar and I needed your misdiagnosis video today. I’m so sorry that this has happened to you! Please know your non-linear journey IS helping people! Thank you ☺️
So much of this is reminiscent of my own experiences. When I was in high school I woke up with a headache/migraine that didn't go away for 3 years. It wasn't until 2 years into this suffering, numerous hospital stays, and 5 months of missed school, that I was diagnosed with NDPH (New Daily Persistent Headache) which had no really effective treatment, as well as Psuedotumor Cerebri. At the same time I was also diagnosed with Fibromyalgia, IBS, and Stomach ulcers, but was totally treated like a hypochondriac by medical professions overall, and I was still a teenager so I was easily dismissed. Fortunately, I went into spontaneous remission from the NDPH and the Pseudotumor Cerebri, but in laters years was diagnosed with POTS, NMH, and finally EDS. In the context of EDS all of my numerous diagnosis's made sense. Now I'm 30, and more symptoms have come up since then. I have an implanted mediport for saline infusions, use a cane daily, and am on numerous medications that help me get through the day. Having the EDS diagnosis has made all the difference in my medical care though, since a genetic condition gets taken seriously. I would encourage you to look into EDS as a possible underlying mechanism for your conditions. I hope this helps and wish you the best of luck on your journey!! Keep advocating for yourself and for your children (and future children) - having a diagnosis is the best gift you can give them and yourself!
What is eds
My friend has a pseudo brain tumour. They put in a shunt because of too much fluid in the brain. She’s had fluid taken out as well by way of spinal tap. Eye doctor discovered her illness when he did an eye exam and saw the pressure in her head by looking in her eyes with a scope. Meds worked for a bit then they stopped working. I hope you and your doctors have better success then my friend.
I’m so happy and SO proud of you! Cried through you saying all the differences you’ve noticed so far because you deserve it so much and because I’m so hopeful for that for myself. Currently a week out from my second spinal patch for my leak. They’re also questioning IIH (I have EDS & POTs also), but they can’t diagnose it or really work it out because I’m leaking so much.
Enjoy all these improvements and celebrate them, they are HUGE!
I identify so much with a lot of your symptoms. I've only seen one neurologist who quickly diagnosed me with migraine despite the new vision loss (permanent, not just before I get a migraine) and my description of the confusion, vocabulary loss, and trouble performing stepwise activities that I experience. I brought up my concern about the permanent spots in my vision again, and she said that she thought it was a form of ocular migraine. I'm so disheartened and exhausted since I have already been to doctors and hospitals so many times in the past few years for ovarian cancer and hormonal issues. At this point, I'm not sure if it's migraine, or EDS (I also have hypermobilty), or pseudo tumor, or IH, or hormone imbalance, or what. But I have no more resources (time, energy, willpower) to go through the rigorous journey of getting to the bottom of my symptoms. I'm so tired, so in all honesty, I'm just going to suck it up and have my bad days and have my good days until or if something more serious comes.
Don’t worry……Good days will come✌🏻
I'm so glad you got this answer! BUT I will say, this condition still has a root cause, and I'd be willing to bet it's in your connective tissue/hypermobility.
I keep wondering about that. "Maybe she has EDS?" keeps going through my head.
Just yesterday I got a possible explanation of why I tilt my head for 26 years. I am understanding the frustration of having a misdiagonsis.
I'm going through the testing phase now for my migraines almost every night. Although my symptoms are not nearly as severe as yours I know how frustrating it is dealing with doctors and the medical system I hope and pray you will get better soon May God bless you and your family
I’m glad you are finally getting some answers. I suspected for some time that you were experiencing head pressure issues because of your frequent scratchy voice-a common symptom with high pressure. I have Chiari and IIH. In my case, a good neurosurgeon gave me my life back with a shunt/anti-siphon device that was right for me. I was checked, and I am not a candidate for stents. Back in my 20s, I was told it was all in my head. Eventually, a good eye doctor sat me down, told me everything I had been told before was wrong, and I needed a brain MRI. Well…it was all in my head, but it turned out I needed a few brain and spine surgeries. Now, I have been back to school, got a masters, and am off disability. There is hope!!
I'm seeing a new neurologist next week and I think I'll be bringing this up
Thank you. This has given me some hope. I’m going through similar in the U.K. I am diagnosed as having EDS, POTS, bipolar and anxiety. I have had a constant headache and stiff neck (severe neck pain) for around 3 years now and have suffered from migraines for about 15 years (I’m now 29) at the beginning of the year I was rushed into hospital with a severe seizure like episode (40• temp, 180bpm and full body tremors that were on and off every 10 minutes from 8.30pm till 5am) after 5am everything cleared up but I was left with a pounding migraine and difficulty walking at all unaided for around 2 weeks, this was dismissed. I now have visual snow, blurry vision (normal eye tests), tinnitus, vertigo, balance and walking issues since then. I also have had a few episodes where I was rushed into hospital suspected of having a stroke. Migraine with aura and POTS being blamed and after battling with my doctors I now have the diagnosis of neck instability and upcoming investigations (mri). I do feel I have a fluid leak as I have a lot of the symptoms, CCI and potentially Chiari malformation. I also wonder as you said you suffer with hyper mobility whether EDS had been looked into for you? I know a lot of these issues are common. I also have children, 4 and 5 and really want to get better for them 💛 I wish you the best
** I also had to battle for all my diagnosis. I was laughed at for suggesting EDS and told that POTS and CCI weren’t real illnesses
Glad you got your hypermobile type Ehlers Danlos syndrome properly diagnosed! It took me until age 38 before I was diagnosed, although a doctor suspected it when I was 21. The hEDS diagnosis was super helpful, since it was a unifying diagnosis to explain all of my health issues and was able to guide my doctors to better treatment options.
Near the beginning of this video, she mentioned something about having hypermobility, so I wouldn't be surprised if she ends up being diagnosed with hypermobile type Ehlers Danlos syndrome as well. Most doctors don't know enough about it, though, and often get hEDS confused with the 13 other types of Ehlers Danlos syndrome and the related collagen-based disorders. When I was 21, the doctor who was supposed to screen me for hEDS screened me for Marfan syndrome instead by mistake.
@@Dulcimeristhow are you now.ime diagnosed 43
@@Truerealism747 I'm alive, but that's about it. The delayed diagnosis allowed time for damage to happen to my body, mostly with my back. I got a surgery at age 26 that the doctors ever would've done, had they known I had Ehlers Danlos. The surgery caused a lot of complications and a very long recovery period.
Im so so so glad you got these answers!! This is such a HUGE problem, us not being listened to, our concerns not being addressed. We deserve better. Keep self advocating and if you cant, look for someone who can advocate for you. You and I deserve this.
@MommingwithMigraine Wow! Very happy they finally got to the bottom of what was causing most of your illness. IIH was one of those things where there was like, two or three sentences in our paramedic textbook and that was it. You're the second person I either know/am friends with/or follow on social media that has been diagnosed with IIH, and had a lot of the same symptoms I've had. Thank you so much for sharing! You've helped encourage me to research this further and better advocate for myself. Having "top" neuro docs repeatedly dismiss your symptoms and just push pills is so frustrating. Been there done that with being prescribed meds with potentially dangerous side effects and not being warned. Topiramate, Sumatriptan, and now Nortriptyline.
Thank k u for sharing-took me a long time and many drs to find that my epilepsy could be cured with a surgery and now I am am battling serious headaches and gut inflammation-so looped with each other-I have now seen 13 different Dr’s-and I actually feel I had a light bulb moment at the appt last week 🙏🏻🙏🏻🙏🏻 never stop fighting for you!!!
Anyone been diagnosed with Meniere's Disease, later to find out it's actually CSF. Been dizzy, off balance for 2.5 years, 24/7 tinnitus, intermittent head pressure, ear fullness.
I have had 24/7 migraines, tinnitus, visual aura, and recurring olfactory hallucinations, since birth. I was misdiagnosed until I was 48! Doctors told me it was all sorts of things such as hyperglycemia and other issues. A new doctor at 48 finally told me it was migraine and put me on flunarazine. The drug changed my life for the better, but I still have all of the symptoms 24/7 at a low level. Which makes me think that I have another issue. My sister has MCAS. POTS is in the family. So at this point I don't know. I did research and even Intracranial Hypertension has similar symptoms, but I had this when I was young and really skinny. Everything that I read on IH says that the symptoms go away with weight loss. However I don't trust what most doctors say. I am happy for you that you finally got a diagnosis, your symptoms are way worse and more varied than mine.
Rccx gene theory autism ADHD heds causation chronic migraine but in upper body now no headache I've had pots lost my mum.ti severe ms heds father as adhd surely and cfs
Thank you so much for making these videos. I don't know if this is also what I have but this is giving me the fire to push my doctors more. My headaches started 9.5 months ago on September 15th (5 days after you made this video omg) just out of the blue for no reason. At first they only lasted a few hours and would go away but they very quickly got longer and more frequent and I don't think I've been without a headache in about 7 months now.
And I've felt like such a hypochondriac this whole time but I know in my gut that something's really wrong. I've seen so many doctors at this point and it's like they don't even listen to me. At first they said it was stress, then migraines, got a normal CT except for a huge sinus block, they said I bet that's causing you a ton of facial pain and headaches, had sinus surgery. Nothing changed.
So then I went to a neurologist and he talked to me for like 2 minutes before he decided I have occipital neuralgia and I could walk out of the office pain free with some nerve blockers. I got them and felt absolutely nothing. No medications help, they can only really take the edge off. Luckily I'm going for a follow up in like 4 days to tell him that no actually none of that helped. My mom decided she's coming with me to help push for answers. I'm so sick of this I can't believe you've had it for over a decade. I wish someone would actually listen to me.
Congratulations on your journey to recovery. Please let us know what to do to recover from IIH.
I’m going through something similar, I’ve always had migraines and never realized this could be a symptom of something underlying. Thank you for sharing your story, I am getting a colonoscopy tomorrow morning. God bless you
Thank you so much for making this video!
Jen, wow running into you again.. so happy you're getting some answers and hope and improvement. Giiiiirl you're an inspiration and a great mom. Congrats on all the new life in your life ≤3
Over the past couple of years, my chronic migraine symptoms have been getting progressively worse. I probably wouldn't have done anything about it if it wasn't for this channel, but now I am carefully tracking everything (because my main symptom during an attack is forgetfulness), and am planning on setting up the necessary appointments to see what can be done. Thank you for this channel!
I have suffered with what you were talking about for years and they treat you like absolute crap! Like you’re a crazy person, like you don’t know what pain is, like you don’t know what a real problem is it is awful. You just helped me make another doctors appointment, I think I am going to address at first occipital neuralgia and cervical spinal stenosis and then I’m pretty sure on top of that. I have what you’re talking about as well. I’m pretty sure I have a couple of terrifying things together. It’s awful that they let me be untreated.
Wow, thank you so much. Your cognitive function is coming across good. I've had migraine where for 4 years brought on by light and screens. I'm still untreated because the meds interact with my amitriptilyn and high heart rate.
The last surgery tried to say it was all mental health. Well constant migraine is enough for anyone after 4 years. I get shocks go through my lobes. I find I cannot have a conversation really not a deep one. I also rabbit on (talking ) this is due to the basil ganglia activity in the brain. LL NERVOUS SYSTEM RELATED. Sorry for caps.
I feel less mad now thanks. I. Aware I could end up having a stroke or something. It's not anxiety it's brain stress from constant migraine.
I was born with Hydrocephalus and that means that cerebral spinal fluid builds up on the brain and like others my body can’t drain it off without a device called a shunt. I was fine until 6th grade (so 2012) I started having a headache that wouldn’t go away… Ever! I had had my shunt replaced multiple times and nothing… Well in 2014 I got the shunt replaced again and for the first time in two years I didn’t have a headache and I was headache free for eight months. Then unfortunately it came back and I’ve had it ever since. I started hearing about New Daily Persistent Headache (it’s a migraine disorder) that is rare and there isn’t a whole lot of research on it. Unfortunately there isn’t a cure and sometimes it just goes away for some people, but others are stuck with it.
I’m getting Botox starting on the 10th of November and I’m so grateful I kept pushing it with doctors and my family.
I’m so happy you’re still fighting. I’m so proud of you! God bless you and your family. Ps before you said “keep fighting” I wrote the comment above and I wanted to mention that I have a tattoo on my forehead with three simple letters AKF… Always Keep Fighting.
How are you now?
I was diagnosed with IIH/Pseudotumor Cerebri in 2011. I did do the LP, and it caused the WORST HEADACHE OF MY LIFE. Topiramate was a nightmare. It was a huge breakthrough, but it didn't explain all my issues either. Ultimately, my diagnosis was hEDS. I have mentioned it before, but it bears repeating. It is beyond my ability to understand how someone can be BORN with a condition and not be diagnosed until age 40. I'm pulling for you lady.
It happens all the time I was diagnosed at 33 with chiari malformation, 9hrs of neurosurgery but 25 years on I'm still hanging on. Support groups on the web and annual conferences for fellow patients and family are so important. I never could understand folks that complain to their GP instead of reaching out to a teaching hospital those resources really do look to solve medical mysteries. (SHOUT OUT TO MGH) Being proactive is a must. Jen might have saved herself some aggravation with an L&P. So glad she has some piece of mind, hopefully she finds some relief.
My hypermobile type Ehlers Danlos syndrome was delayed about that long, too. One of my doctors thought I had it at age 21, but the doctor who was supposed to screen me for it was clueless and ran me through the criteria for Marfan syndrome instead.
I was 43 now 44 after years chronic migraine well decdes fybromyalgia now autism diagnosed lack of care for us@@Dulcimerist
I love to hear someone say they get migraines too and what they mean is a head ache. I have had a migraine every day since Sunday and just hoping today it wont hit.... I get the auras and about 3 hours of hell before it goes away until the next day. Normally I get them once a month or so and lately I have no idea what is going on. I am not stressed, have not changed food or anything so next step for me is remove everything and start over.
Hey Jen! I’m so glad your doing great however you have similar symptoms to my own. I have fibromyalgia
Was headaches your primary symptom? Or were other things involved. Cause I have headaches every day all day and joint pain in my knees but I don’t know what I have
I'm so happy that you can still do the web and care for 2 babies! I was in similar situation, DK if it was 5 yrs or more...IIH, pseudotumor...Had a stent inserted March'23. Anyways, I realized, I stopped crying much about 10 yrs ago, but when I cry -seldom-It really feels much better, I think the release of fluid by tears is a good think. So my advise - cry if you can....
I have IIH and had chronic migraines and aura's for about 17 years before getting a diagnosis- I almost died before I got it. I had to have a lumbar puncture to confirm mine (opening pressure of 28). At the time of Dx I had hallucinations, intensifying headaches daily that were mind piercing, drenched in sweat, had vertigo, my bp was 230/130, my speech was slurred, and I couldn't walk or stand straight. This was Dx in 2017 and I nearly had a stroke before they did the emergency lumbar puncture. I also have hypermobility because I have Ehler's Danlos Syndrome. With both of my pregnancies with my daughters I had polyhydramnios- which I'm convinced is because of EDS.
I’m brand new to this channel (this is the second video I’ve watched) so you might have addressed this before, but have you looked into Ehlers Danlos Syndrome? I have it and many of your symptoms are similar. Not everything you discussed could be under that umbrella, but the Hypermobility, POTS, and even the migraines are all common symptoms. EDS is often comorbid with other diseases snd disorders so it’s possible you could have it in addition to your neurological problems. If you’ve already discussed this, ignore me! But it took me seven years to get diagnosed and it’s rare enough that most doctors don’t know about it so I always mention it if I hear of someone with EDS symptoms.
I can relate to this so much. You are amazing for not backing down. I took me 30 years to get a diagnosis of EDS, with PoTS, Migraines, Gastroparesis, CCI and many other things, but that was only because I did my own research, left to the doctors, I'd still be undiagnosed, but, I too have a missing piece of the jigsaw puzzle, and I really think it is High Intercranial pressure, but, my neurologist won't listen, and I'm getting so exhausted of the fighting, and I'm not sure what to do next. I hope my fire awakens again soon and I keep fighting, like I used to. Can I ask, what are the changes you've made please, apart from not having salt now? Sending loads of love to you and your family, and many congratulations on baby number two! Xxxx
Glad you were able to get diagnosed, and I hope you're doing better and are finding the right treatment options. I have hypermobile type Ehlers Danlos syndrome, which causes POTS, gastroparesis/IBS-C, migraines, and a bunch of other issues. My doctor put me on the non-stimulant ADHD medication Clonidine (or Guanfacine) at night to treat my POTS, anxiety-like symptoms, migraines, insomnia, and restless leg syndrome. This type of medication signals the body not to dump so much adrenaline and norepinephrine into circulation, which calms the "fight or flight" response and directly counteracts hyperadrenergic type POTS. My doctor also put me on the popular EDS medication Pyridostigmine during the day to treat my gastroparesis/IBS-C and to further treat my POTS and fatigue. This one stimulates the vagus nerve, which is in charge of the "rest and digest" functions, while also aiding the muscles which move food through the entire digestive system.
I was almost diagnosed with a pseudotumor cerebri, everything matched except my eye muscles were so swollen my eye was stuck in a down position. But if your pain was similar to mine, it’s unexplainable how bad the pressure and sharp pain
ausea can be. I’m sorry you went thru that. My diagnosis is actually idiopathic orbital myositis and I was diagnosed by a neurological ophthalmologist, it was a fight to see him. I’m glad you advocated for yourself, idk why the YT algorithm sent me here but. ❤️✌️
I don't have migrains, but chronic pain, i relate to you so much. I fight so much to be heard. I'm glad you find an answer !
Where is your pain my upper body chronic pain they say is migraine
I am so glad you came to the realization to trust your gut and what your body is telling you if you aren’t convinced the drs have it right. I have had many experiences when this happens, because at the end of the day, you know your body better than anyone! And I’m not saying not to trust doctors, but if your gut is telling you something different than they are, it’s always good to dig in further. You may have already noticed that the same thing happens when your daughter gets sick… Mamas get that instinct for their children too!
It’s insane that your new diagnosis is the reason I started watching you in the first place. Migraines are secondary to POTS syndrome, which I have. I recently started getting migraines because of my POTS and found your channel! Wow! Crazy discovery
Also I went 3 years with syncope episodes and other various POTS symptoms that doctors under diagnosed for me as well. I was initially told it was all in my head for 3 years and it was just severe anxiety!
@@itsmonday5762 That happened to me, too. Since the hyperadrenergic POTS is overactivity of the sympathetic nervous system ("fight or flight" panic and anxiety response), that often confuses doctors and leads them to misdiagnose it as anxiety.
The POTS medications Pyridostigmine during the day and either Clonidine or Guanfacine before bed have mitigated my POTS, migraines, digestive issues, and other issues really well. Each person is different, so what works for me might not work for others with the same issues.
I'm sorry to hear of your ordeal have been dealing with severe headaches for 17 years had two suspected seizures in the night. Id one normal eeg but got jerks during night and woke with horrendous headaches think they are connected the heafache is one that no painkillers would take away. Like yourself I'd like to know the root cause and that you can get better. Currently taking topamax. Symptoms are unfortunately still bad enough but night symptoms are gone. Best of luck on your journey. I'm meeting a neurologist on the 5th in hope they can find a root cause.
I don't know what possessed the TH-cam algorithm to show you to me a few months ago, but I'm so glad it did!
Thank you so much for that truth at the end. About taking breaks to regain energy, but still fighting.
I'm in the middle (at least I hope it's the middle) of this right now. And it's exhausting. But I need better for myself. And my husband.
I've got a pretty awesome support team, and I'm glad you're around to encourage from afar.
Congratulations Jen!
We crossed paths for a reason 🥰 I'm cheering you on, Sarah 🎉 Keep me posted!
I have IIH it’s been 7 years since my diagnosis. im so sorry you were misdiagnosed for so long :(
Thank you =( how are you managing?
you talking about people brushing off your problems always hits hard, because i've been so bloody brushed off by doctors for years. it feels horrible and i don't wish it on anyone. i'm so happy you're getting the care you deserve after all this time and i hope you'll just get better and better from now on. we're all here cheering you on.
I totally thought you had vascular EDS even now the symptoms actually fit even the symptoms that I didnt know till you mentioned them today fit even high brain pressure fits ......wow I feel for you
Have you looked into EDS? Given the hypermobility and pots?
Absolutely
🦋I'm proud of you Jen! For continuing your fight for answers even through adversity. I have alot of migraine issues and none of it makes sense...I've even thought I'm hypochondriac or hyper vigilant, or I have anxiety...What you've proven to me is finding a neurologist who listens is a tough battle, but it can be done. 💪👍
PS- I can see that night and day difference in you ...that's amazing! 💕
Thank you!! I hope you find your answers too, if you think they're out there 💜
@@MommingwithMigrainehow did you get your diagnosis btw? I have headaches all day everyday for two and a half years now and my MRI came up clear. I’m just not buying “chronic daily headaches” I really believe there’s something underlying, my insurance is shit lol I have Medicaid. What shocks I say when I go to the doctors? What do I ask and rule out?
Buddy still alerting to fainting or Migraines? Ok, dumb question. Of course he is. You're obviously having (at least some) success with things you've implemented, IIH can be treated or fixed, correct? Will you be able to get your life back on track (however that may look like), return to work if you want? After the baby is born, is the doctor able to map out any certain time frame on "recovery"?
Boom! 56943.751 questions are assaulting me! I'm happy to know you're making headway in this part of your journey! I'm also happy to get to know Jen. You are an awesome human and I adore you. The last part telling us you're using more words, you are rocking self awareness right out the roof! I'm thrilled with what you're willing to share. Thank you for being you 💚💙💚💙💚 hold on tight, surely things will keep improving! 🙏
"Cooking up a storm"... yes yes yes!
Yes he is still alerting! Treatment options and prognosis vary for each individual... I'm pregnant, so I have to exercise patience and enjoy my small (big) wins in the meantime. Thank you so much for your kind words and support, this comment was straight FUN ❤
I NEED help here too chronic daily migraine with the most nightmare cranial pressure head and ears. No help from specialists or neurologist. How do they measure interracial pressure pleeeease??????? Even my eyes do painfully and swell and bloodshot all time. I get to wear I cannot talk or get words I walk around confused lost or lay in bed brain dead. I have have so much tachycardia episodes the past 1-2 years but never before in life. Noraml blood pressure for me is very very low.
I feel like I'm a anyerism or something waiting to happen. Or wait for them yo say u have brain tumor or cancer and sorry it's already spread. Or shoe from stoke or seizure.
I am extremely barometrically sensitive Amy change of drastic barometric weather spikes and especially high humidity and rain I'm like a bird disoriented in a storm. In excruciating pain including face amd sickening nausea. And tinnitus
Connective Tissue!!!! Hypermobility migraines POTS- brain pressure, seizures...all possible of EDS. It's rare and there is no cure but it provides answers. I'm sent to the ER everytime and it's still a battle but its knowledge
Ehler's Danlos Syndrome--- beighton score test.
My score is 7 😘
@@MommingwithMigraine and no diagnosis?!? grrrrr well I hope they figure it out soon I know I hate being sick all the time.
This is exactly what happened to me after covid. I have pushed for 2 years with new peripheral vision. Was told ("you've always been like that, migraines"). I am now at the point of Cushing's Traid after a spinal tap injury/leak (12 months ago).
I’m only ten minutes in but I’ve been a sub since you had less than 1K subs I believe and I needed to say thank you for this video. Semi-long thank you rant incoming:
I have been having chest pains for around 6 months now ever since my heart had a bad reaction to my covid shot that landed me in the hospital for a bit. (I had elevated blood pressure being treated already. Not blaming the shot, get vaccinated everyone).
Ever since then I’ve had chest pain that comes and goes sometimes more severe than others. I’ve had an echo, an X-ray, a stress test, and a heart monitor for a week. All my cardiologist said is “well you might be having chest pain but it’s not your heart” and that answer doesn’t sit right with me since i can literally feel my heart. Idk if you’ve ever been able to FEEL an organ just sitting in your body, but it sucks. I’ve been considering finding another cardiologist that is less dismissive and this was just the push I need d. Thank you Jen!
Saying a prayer for you, I hope you get a diagnosis and full recovery and rehabilitation. Hang in there and keep fighting to be heard. Jen said her doctor listened because she has been in her shoes, it may take unearthing a doctor who has been in your seat as well. Best wishes and blessings for you! 💚
@@deannar.7670 I've had this too! It's awful - during a flair up one of the paramedics in my life took me to the hospital because HE thought I had a heart attack.
That sounds similar to what happened to me. I had pneumonia twice in 2015 (that sucked so much) and developed episodic heart attack-like symptoms where it felt like my sternum is being cracked open and I can barely breathe - probably costochondritis aka inflammation of the membrane between ribs and lungs (sometimes caused by a viral infection). My doctors have said it is usually a comorbidity that piggybacks on autoimmune illnesses.
Jen, I’m speechless. Way to be proactive about your health and body! It’s an inspiration to see someone who overcame so much. Keep fighting the good fight and may you have many wonderful blessings ahead! I can’t want to see your future videos where you describe more and show us progress!
I wonder if you also have EDS.. hyper flexible, slowly healing, and POTS and some neurological issues can be connected/related to it.
My bestie, from the youtube channel Chronically Unique, also has EDS and IIHT along with a bunch of other stuff and POTS symptoms pending diagnosis.
The common comorbidities... wishing all the best!
I started having headaches beginning of last year, at first I started to be a little dizzy now I’m fine it hurts on one side of my head sometimes at the back sometimes at the front, I can relate but mine slowly slowly went away over time but came back this year it’s gotten better but I don’t the reason for it I’m only 12 and I started having these headaches when I was 11 I noticed body changes so it could be hormonal? Headaches run in my dads side of the family like my aunts have really really bad headaches even having paracetamol or Advil won’t make it go away thank god my headaches go away when with paracetamol I’m pretty sure it’s hormonal but it feels horrible sometimes.
Thank you so much for sharing your story, I can’t imagine how hard it was to show yourself at your worst. I am so glad you got the answers you were looking for. And thank you for posting this video, you help so many people. I am one of them and I really needed to hear the message you shared today about listening to your gut and advocating for yourself. I have been struggling with my doctors working towards a diagnosis, and it is a really hard road to go down especially when you feel like your alone. So thank you so much for providing a safe space for so many people. Have a great day :)
So do you have Ehlers Danlos Syndrome, or other connective tissue disorder?
Same here. Starting with all what you had!
I am so happy you found a doctor that listened to you! I have been dealing with worsening chronic migraine for the past 3.5 years, and found your channel last year while dealing with month long migraines with no respite with meds. I also fainted last year after being put on toprimate, and was brushed off by my doctor when I had other terrible side effects with it. It is sad that we have to advocate so fiercely for ourselves, but I am so happy you recieved the correct diagnosis!
My hypermobile type Ehlers Danlos syndrome diagnosis was delayed until age 38. The migraines, tachycardia/OH/POTS, convulsive syncope, and other issues that are all related to Ehlers Danlos syndrome was brushed off as anxiety at first, too. Since the hyperadrenergic POTS is overactivity of the sympathetic nervous system ("fight or flight" panic and anxiety response), that often confuses doctors and leads them to misdiagnose it as anxiety.
The POTS medications Pyridostigmine during the day and either Clonidine or Guanfacine before bed have mitigated my POTS, migraines, digestive issues, and other issues really well. Each person is different, so what works for me might not work for others with the same issues.
Something similar here. Migraines and SCAD heart attack caused by lupus.
Way to keep fighting for your self and your family 👏 I had to fight for myself regarding my seizure disorder many years ago So glad I finally found the right doctor. You’re doing everything you can and I am so glad TH-cam has helped you 🥰
Thank you thank you! Same fight, what a bummer, I'm sorry. But you have your answers now?
@@MommingwithMigraine well I have complex partial seizures and my age of onset was 31. I wanted to “fix it “ whatever it took finally found a neurologist who listened and explored all options. No tumor, no idea why i suddenly started having them (I have my suspicion-worked in an explosives plant for 6 months-think I may have been exposed to something) and now I have been stable with few seizures in the last 25 yrs. but the right treatment plan made all the difference. I learned that if you don’t fight for your self first the first doctor you have might not fight for you.
Thank you for sharing! Praying for your miraculous healing in Jesus’s name!
Amen!!!!!!!
Dang this is a powerful video! The fight you've had to get this diagnosis has been epic proportions, I'm so glad you finally have a doctor on your side willing to look into things with you.
This has come at a great time for me as I am building the courage to swap GPs. My current GP has never been great but recently has been putting all my symptoms down to being overweight, even ones that started way before I put on the weight. He also thinks I am a hypercondriac as he did not know me before I started advocating for myself. I need someone who is willing to explore things with me and understand that I have that gut feeling that this isn't solved by my diagnosis yet.
Thank you for your courage to keep going and to share your journey on TH-cam, I know I'm not the only one who truly appreciates your example to keep them going in their own battle
Thank you for your encouragement to keep going back and advocating for yourself when doctors and others are making you feel crazy. It's so exhausting when it takes years to get traction on getting help when you know something is systemically wrong with your body but you are just brushed off as anxious. It's so bittersweet to finally get traction on a major health issue after so long but wonder if they had only listened earlier what grief and bodily damage might have been avoided if they didn't brush off women as just complaining and having anxiety when there is more going on.
Oh, holy crap!!!!! I'm so glad you were finally listened to! That's WILD!!!!! Congrats on better diagnoses and treatment paths!
Hi i am chronic migraine and most hell off symptom's the doctors have no idea i do understand the hell you are going throw i can't get off the bed or couch you go to doctors can't help you at all thanks for your help
Oh my geez...My cousin...had this...years ago...she went deaf and blind...tho her hearing came back shes totally blind from the pressure on her retinas it destroyed them...glad you caught it... cause back when my cousin went thru all this..they claimed she was making up the headaches the double vision...the passing out.. she found out in her 40s that if they had treated it...when would still have her sight shes now in her 60's but has been blind since she was a teenager. I feel so bad for you.. huge hugs...Dr.s sux...they dont listen to women...at all...Im disgusted by them making you suffer for so long...Huge hugs...much love...
Do you think your cousin could’ve had narrow angles it’s also called narrowing glaucoma it’s a precursor to something that can cause you to go blind if you don’t get treated STAT/ASAP!!
@@Writerdust no she went thru her stuff when she was 14 or 15...she found out years later it was iih..it totally destroyed her retinas at 15...she's now 65...she's been totally blind since she was 15...she's a amazing woman...for all she's went thru ..
I'm so happy for you!!!!! I watched my mum battle a chronic illness when I was a kid, and have to fight so many doctors to uncover a treatment plan that worked for her. She's now in remission because she found a doctor willing to do more testing, more accurate testing, different kinds of tests -- and now I still have her around.
Do you plan to contact the doctors who misdiagnosed you? Might be a good learning opportunity for them, so that others don't have to go through the same thing you did.
THIS. When you are ready, please write your former doctors a letter explaining your current diagnosis, and specifically why you left their care. I would also suggest filing a copy of the letter with your state's medical board. I'm an allied healthcare professional and I can't tell you the number of times I wish a patient had formally informed a doctor of the reason they left. The only way things change is by giving the feedback to they can see their mistakes, though I also understand it shouldn't have to be your responsibility.
Honestly, that shouldn't be put on her. The new doctor should be the one contacting their colleagues.
I’ll be honest.
They probably wouldn’t care.
They are stuck in this pretentious, God complex, state.
They will probably still continue gaslighting.
There is the chance for change. But too often there will not be
@@Finkeldinken such a great suggestion.
@@jay-leevanderberg8174 That's why I suggest filing a report with the state medical board as well. That will certainly get their attention at least.
So happy that you kept pushing Jen!! I hope this change is all you need to start having more great days than bad! ❤️❤️
Yes! The right direction! Thank you!
God Bless. You have given me hope.
God bless. You've got this.
FINALLY!! CONGRATS! BETTER LATE THAN NEVER!! ❤️❤️ so curious to learn more about the things you now do that makes all of your symptoms so much better! It's so nice to see you this way! After all these years and months of fighting for a true diagnosis... Glad you got a better one now and that there's things you can do to treat it!!