Hyperadrenergic POTS
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- เผยแพร่เมื่อ 6 ก.ย. 2024
- Dr. Diana, as Patient, describes what it feels like to have Hyperadrenergic POTS.
Read Dr. Diana’s amazing book of recovery: The Driscoll Theory potscare.com/t...
Dr. Diana Driscoll -- now seeing patients at POTS Care potscare.com/
Join the Rebellion Today: / potsrebels
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The worst thing for me was getting what I assume is a mix of hyper/neuro POTS the same time I had a pulmonary embolism and clots in my legs ALL AT ONCE! I felt my life was over when I got it and nobody understood what I was going through or gave damn as I looked normal to them.... But I felt like I was dying and a demon was in possession of my body and there was nothing I could do but see what's been lost and I'll never recover from.
I then told myself that my autonomic system is not going to make my life miserable, I'm going to push myself to the max and force my body to adapt little-by-little. Lying in bed staring at the ceiling was not what I wanted...!
Not everybody can do this regimen you need to find what exercises you can do and nor do I recommend it unless you ask your doctor first!
At first walking was a nightmare I thought I could never regain such a simple task even a block distance seemed impossible, I can't even fathom to describe how many issues were occurring at once at that time eyes,heart,digestion,brain, the whole works! After three months I started walking a few blocks by force and sitting on the ground when I couldn't do it anymore, the sensory overload was the worst! But I waited till I could regain my composure and heart rate with oximeter and some compression stockings and finish my trip.
On the six month I was walking 1-2 miles day, then at the 1 year mark 5 miles day at times but due to my minor case Ehlers Danlos my joints got mad and I stopped long distances like that... At 1-1/2 years I walked and started doing HIT sprints with max heart rate of 185-190 and stopped when I reached that threshold sprinting..! Believe me, you feel like dying at that point with POTS lol... But my body started adapting to these very stressful exercises and somehow my symptoms were becoming less pronounced and my sitting to standing heart rate got better.
By year 3 I took up cycling since it's less stressful on my body due to Ehlers Danlos which I assume I have due to flexibility and joint popping. Now I commute 3-10 miles day by bike 5 days week up to 25% grade hills fully loaded with cargo averaging about 20lb-45lbs.
I can reach speeds 28-32 miles hour on my road bike and am about as near to what I was before POTS. Keeping my heart rate in check with a meter strapped to my chest connected to my phone. Now I commute by bicycle almost everywhere, the scenery seems to be the most therapeutic thing you can't even possibly imagine to healing the intense emotional roller coaster to my debilitating health issues.
Does this mean I'm fully recovered..? HECK NO! I still live with everything I had before and will probably live with this the rest of my life.
But I accepted it and thankfully my digestive system work good now.
Did it make me more appreciative of life and be more empathetic to the plight of the disabled, YES!
I hate to say this but no doctor diagnosed me of these ailments nor treated me for them.
I can't afford specialist and Covid didn't help either... And even if I did get a diagnosis my treatment was my resolve.
I had to research everything myself and push it to the absolute max I could handle.
My stubbornness payed off, and whenever I have one of THOSE days that's when I get on my road bike and tell my body it's going to be a hell of a ride that day due to pissing me the hell off..! And off I go cycling 30 miles to the beach & back and take day off work.
I almost cried reading this. It’s very similar to my story. I’m in the middle of a nasty flare up and it has made me realize just how much improvement I have made over the last couple of years where I was living nearly as if I didn’t have the pots part of my condition. I admit this flare has shook me and snapped me right back to the terrifying beginning and your message reminded me that if I did it once I can do it again. Thanks
I’m not the only one…I’m in tears
Treatment for adrenal insufficiency, the endocrinologist referred me to a friend/cardiologist that treats what she believed I had/confirmed to be POTS. Since 2008, I had been dealing with sinus tachycardia and in 2012 started fainting. So much on my plate, but finally some answers. Thank God for these new doctors and a recently new PCP, that led to new treatments. Lupus believed to be the cause of most of the problems. Close monitoring of blood pressure, heart rate & meds. Under control!
Thermal regulation was my worst symptom and having the highest adrenaline markers my neurologist has ever seen, over 1,000. Dr. Robert Wilson at Cleveland Clinic main campus has been in my corner since day one. Also it’s very important to have a doctor back you up if disability is needed. Having a encephalocele in my sinuse cavity sure didn’t help at 57 years of age. Best video for family and friends to getting a glimpse of what us patients go through. This video is by far the best crash course for understanding. Your videos helped me when I had to walk away from a good paying job.
Went through ER’s 19-22 times before a doctor FINALLY said “I think you may have pots” and my god saved my mental insanity
Makes sense I get diagnosed with anxiety every time.
@@davidf3821 that’s what my son was told. He was just diagnosed
I have pots but I am not sure what kind I have but I sure can relate to some of this. I have the WORST anxiety, i feel like adrenaline is running through my veins and I can't relax until i finally feel tired enough to sleep. I don't sleep much only 5 to 6 hours cause I just can't anymore. I have a hard time breathing as well through out the day, I want to escape my body too. I feel dizzy 24/7and i feel like the room is going to spin and sometimes it does. My heart races when i get up...goes from 80-100 up to 120-150....I am one month postpartum and so miserable. Just found out I have POTS recently. And I am struggling. Thinking that I might have this kind of POTS :( I hope I can find something to find relief. You seem so normal Dr. Diana :( I wish I were like you! I can't even leave my home except to see doctors or hospital its so bad :( I wouldn't wish this stuff on my worst enemy!
You sound like me a bit! I have hyper POTS :((
Have they tried you on Guanfacine or Clonidine yet? Those prevent the norepinephrine and adrenaline surges, calming the "fight or flight" response.
Thank you for this. I have had an absolute nightmare of a time and nothing has worked so far. This is nice to see
Hoping they find something that works for you. What helped me was Mestinon during the day, and a small nightly dose of Clonidine. Other good POTS medications include Ivabradine or Guanfacine.
Thank you again for all your wonderful videos. I also want to thank you for including cutting in the side effects. My doctors tend to look at me like I'm crazy when I tell them I've done it to manipulate adrenaline levels. It's not really something to recommend, but it does work. Depending on the situation, it can either be used to increase adrenaline levels, giving more energy to get through the day, or it can be used to temporarily exhaust adrenaline levels and allow a brief period of relaxation (or relative relaxation). It is an unfortunate reality that most of us have been left to self-medication. It doesn't take long to overuse aspirin and NSAIDS, especially with a life-long chronic pain condition. Drug side-effects are usually grueling and then the drugs don't even work. I believe we ARE high-functioning patients thanks to our adrenaline levels pushing us through. Others don't realize how much we are suffering because we survive on a brain chemical evolved to allow us to run away on a broken leg...
This was a GREAT explanation. 5stars to you. I keep coming back to this video. It gives a sense that there are people trying to figure this out and truly understand what’s happening inside our failing bodies. Can’t wait to get the new one that Christ talked about.
I just want to hug you Dr. Driscoll. You are paving the way for all of us who suffer so deeply with no answers. Your positive attitude and loving demeanor are so comforting to watch and listen too. Thank you for just existing and being YOU! I would love to come and see you at your POTS care clinic. I want to help others who suffer from all forms of POTS and especially HyperPOTS. I feel like screaming every day living with this and any kind of comfort that comes my way feels so good. I would love to be able to bring comfort to others with this the way you bring comfort. I pray you are healthy and happy Dr. Driscoll.
Thank you for your kind words, Kerry Sue! This is such a terrible condition and the suffering that can result is horrible, but we have to suffer in silence because so few people will validate this. We'd love to see you at POTS Care!
Patrice, how great that you are getting some answers and some help! Amazingly, a large number of us develop autoimmune disorders of various types - lupus, RA, anti-phospholipid syndrome, MS, etc. I don't think this is a coincidence and am on a mission to find the commonalities that tie these together. Please don't go too far away as I will release my findings when all is sorted out. Hang in, my friend. ;)
Wondering if you are still doing videos or have any update on this connection?¿
That's a very good description - feeling exhausted with legs of lead while standing, so needing to lie down, then feeling very agitated and needing to stand back up and walk. I have encountered one doctor who disbelieved me during yet another ER visit and left me lying in pain from mastocytosisfor 7 hours. The great majority of the staff at the local ER are very helpful. Thank you for these videos - I wouldn't have known where to start searching! About half of my close relatives have EDS, two have died from its complications.
Since Covid, my blood pressure surges to 212/123 & heart rate spikes to over 130bpm and very high serum/urine norepinephrine levels. They thought I had Pheochromocytoma. I was extremely athletic and healthy before Covid. The first t two weeks of the infection felt like a small allergy and the third week. I woke up with extreme edema, swelling all over my body. I looked like I was nine months pregnant. Did a blood pressure reading because the only thing I could think of with swelling was blood pressure from reading pregnancy books years ago with preeclampsia. To my surprise, my blood pressure was 161/112. I had never had a reading over 120/80 before. I was completely marginalized here in Cincinnati. I was told I needed to just calm down by the nurse practitioner at the cardiologist after they couldn’t tell me why I had a sudden onset like this of all of these symptoms . Almost 2 years, I still have edema, vital functions all over the place, my metabolism is so high now combined with Gastrointestinal hyper motility and gastric emptying, I don’t absorb nutrients correctly and immediately use anything I do absorb. After having bloodwork, I found out that I was severely anemic with low iron low B12 low vitamin D, low vitamin B1 my electrolytes were all over the place, low sodium low chloride low potassium, high calcium. I’m still anemic after 2 years of infusions and b12 injections. I can only find information on POTS, but not the extreme surges. Pots is serious but blood pressure over 200 / 120 is the more pressing issue at the moment.
You are so welcome, Jeff! I think all of us have heard our doctors describe us as having "routine anxiety" *eyeroll*. If someone hasn't experienced this symtom, one, they are blessed, and two, they likely have no idea how dreadful it can be. Honestly, if I wasn't a patient, I don't think I would truly understand, either! I shudder to think what could have happened to my kids' condition, if I wasn't first to live it... Hang in, my friend. ;)
Dr. Driscoll, thank you for the videos! I hope you’re still practicing because I will be calling on Monday, for sure ! ❤️
Yes! It's a personal mission for me to help others.
I was just diagnosed with this version of pots .Dr.arden in Oregon is great but she's fighting an uphill battle against the pharmaceutical companies running the healthcare system.
I have hyperadrenergic POTS. without propranonol resting HR is 107 (standing) and very excitable. with 40mg twice a day is 57 (standing). that drug is pure magic.
I have also described the pain as 'pulling Gs' and feeling like I'm in a pressure chamber. I have been diagnosed with multiple things going on at the same time so it seems each episode I have varies so much depending on the trigger and temperature and if I'm tired or if my sugar is low or if I haven't had enough fluids. If I smell perfumes or other chemicals or odors I have one reaction, if I eat something that's a trigger it is different. This week I'm having trouble walking at all :(
Thank you so much for this video! A friend sent me the link yesterday. I've had this horrible headache for 6 days that I've not experienced before (like a huge pressure in the top half of my skull that doesn't ease unless I'm lying down, and I'm even more dizzy than normal too) and it's been misdiagnosed twice by 2 Drs (one GP who said sinusitis despite no cold or tenderness, one A and E Dr who had no explanation but ruled out sinusitis) who don't understand EDS or POTS and I have my 3rd appointment today with my nice GP who is trying to learn about EDS. I'm wondering about the antihistamines to give them a go. What you said about throwing things and cutting is so spot on for me! Thank you for mentioning that!! Looking forward to going through your other videos, and I think you have a fantastic point of view being a Dr and having EDS too, that's so amazingly helpful! Although I'm sorry you're having to go through this too. Thank you again! Xxxxxxx
You're right, Deborah, but my kids and I were basically fine (and I had always been a "health-nut" and avid exerciser until hit with hyperadrenergic POTS -- triggered by a virus. I'm hard pressed to find anything I did wrong to cause this. My son was triggered by 3 consecutive viruses at the age of 8. I WISH vitamins, etc could have kept him healthy. I has been a lot more complicated than that for our family, I'm afraid. If it has been the answer for you, I am thrilled. TY so much! ;)
I took metronidazole antibiotic and it caused my MCAS and POTS
Thanks for posting this! I've been diagnosed with POTS for 7 years now but was just told yesterday I probably have the hyperadrenergic subtype. This is a great explanation. Thanks again.
+Ann F. Concerning your comment about the use of Cymbalta for Hyperadrenergic POTS, it was commonly used for this condition for many years (see Table 3 in this article by Dr. Grubb: www.dynainc.org/docs/potsinadolescents.pdf). Although I don't hear of its use as often now, some patients do show a somewhat paradoxical and positive effect.
I often feel like I want to be anywhere other than where I am, yet I want to go nowhere at the same time. I also get periods where I can't stand anything or anybody touching me, and other times that I'm just really cranky and irritated. They don't sound quite as intense though as what you are describing.
After Covid this started happening to me
Hi Dr. Driscol. Your videos are amazing! I felt a little hope today after watching many of them. I am bedridden at this point. The slightest exertion in my day makes my bp and hr go way up. I call my episodes "storms". Because that's how it feels. On many meds to try and control it along with many of the other symptoms you describe here. With a DO now trying to help me but I've gotten worse not better. Do you have an actual clinic that you see patients?
I know this is 3 years old but yes she does!! It is in Dallas, Texas. I would trust her over any doctor being that she her self and her children all have suffered with POTS. She dedicated her own blood, sweat, tears, body and money for all of us to have a brighter future!
Diana I'm so glad I found this video. This describes some of my episodes down to a T. I had no idea what was happening but I felt ill to the core, I was restless and yet exhausted, nothing brought me relief - as you said I wanted to escape my own body - literally rip off my skin and jump out! Thanks so much for explaining, I really appreciate it x
Oooh mg, my nuro diagnosed me with dys autonomic disfunction/ pots but It didn’t make science because my blood pressure was everywhere and a lot of the time High. But this whole video is me. I’m already on a antihistamines, cymbalta, and nexium and some others. Hard time functioning but push myself. Wow I’m dumb founded. Thank you so much!! Love your cocktail ring I-have a few to many. I love big chunky rings. Also the the song at the end is awesome. Stay spunky!!
carriejanesart, TY, my friend. I'm glad the vids help you in your journey. I believe we have a few speculations about why M.S. is not uncommon in EDS, but no firm answers. I don't want to just guess! I promise to continue researching, though! Big hug...
Thank You so much, I've been diagnosed with hyperadrenergic pots for 4 months now. I have been hypertensive since 2004, suffered from 2 pulmonary embolism in 2006, and downhill from there. Since the PE's I'd been having palpitations and accused of having "anxiety attacks" that triggered the syncope. I also have been dealing with LUPUS....right....a lot of stuff on my plate. Since 2006 GERD, gallbladder disease in 2007(gallbladder removed in 2007), so alot of junk to sort through. While seeking
Can you please explain what "Hyperadrenergic syndrome without postural tachycardia" is, and how is it treated?
I too had to fight with my cardiologist to finally get a tilt test to finally diagnose POTS. I have suffered since I was a child and am now 42 (finally diagnosed) spend hours in the ER not knowing who I was they just assumed I was drunk :( how horrible!!
Hi I'm the same I have pots and when I have an episode I look really drunk. My doctor is taking me off my propranolol he has to ween me off them, he wants to see what I'm like but I feel worse at times🙁
Yes I have noticed major changes over the years too. I will be getting a brain MRI on the 13th. The doctor just wants to be sure it isn't MS before we go on to do a CCI fusion. He is still a little hesitant about what to do first since everything from the skull to C7 is too hypermobile but we don't want to fuse everything. Looking for the best bang for the buck. I have stretch myelopathy. So my myelin is damaged and that can theoretically cause MS type symptoms. I hope it is that and not MS.
Thank you. Thank you. Thank you.
Thank you for taking the time to reply. I would love to help any way I can xxxxx your amazing x
Wow you hit the nail on the head today !!!! Why did you leave us here in Cali ???
I'm so sorry to hear that, Deborah. :( I noticed as years past that my illness continued to change. My early episodes are quite different from my current episodes. I believe there are many layers to this condition, and when I corrected one thing, it revealed another layer to be addressed! I seemed to have more "M.S-ish" symptoms when I had hydrocephalus. Diamox saved me from most of my Chiari-type of symptoms, too. I wonder if you have symptoms of hydrocephalus? Big hug
Hi there, Would Ivabradine be helpful for hyper pots
I'm so glad you enjoyed the vid, wanderingwellness! I hope it was helpful...;)
Hi carriejanesart, I'm so glad the videos are helping you, to some degree. I haven't gotten out as many lately because I'm finding REAL answers for us which will be even more important to all of us than emotional support, I think! I'm also a patient (as are my kids), so I have to suffer as you do in order to learn what is happening. Please join our forum, where I pop on as often as I can! I'll look for you there, Hon! ;)
mmmm...sounds a lot like my symptoms and I've been calling them "anxiety attacks." Very interesting. I do have one other issue...I have consulted 2 Cardio-Thoracic surgeons and one anesthesiologist who all said that I would never survive mitral valve prolapse surgery (I should add that one surgeon said that, assuming I survived the surgery, that I still would suffer with pretty much the same symptoms). Thanks for the info, Diana!
Have a blessed weekend,
Jeff :)
You are so welcome, chemilyx88. It's a horrible condition, but focusing on reducing some of these chemicals can give some much needed relief! Hang in, my friend. Much more coming soon. ;)
I found this video to be so interesting...I have one daughter 18 with pots and EDS...she is being tested for MCAD....But here is what i really want to bring to your attention...I have a younger child 15...she has been physically healthy but struggles mentally...so much so she is in a residential treatment center after yet another suicide attempt.....she has ADHD, and BPD. I have seen no signs of POTS and only one of EDS
Please explain the "histamine scars" I have been told I have these since HS. One spot..a bunch of nerves at the skin that releases histamine? I think it's bullsh**.
But you're so right about what you say. Oh my goodness.. I wish I could move out of my body too !!!
I have felt this way my whole life.
Concerning a question about the use of Cymbalta for Hyperadrenergic POTS, it was commonly used for this condition for many years (see Table 3 in this article by Dr. Grubb: www.dynainc.org/docs/potsinadolescents.pdf). Although I don't hear of its use as often now, some patients do show a somewhat paradoxical and positive effect. :)
I tried the lowest dose for one night and it increased my gastro symptoms and nausea. It also gave me unrelenting palpitations that lasted for over a week after that one dose. I'm the girl that wants to cut open my skin to release all the chemicals or jump out a window. I lash out frequently and feel complete torture. I have dysautonomia and numerous food allergies. Hives treated by Xolair. Nothing treats the hyperadrenergic feeling. Everything just magnifie s the symptoms. The nerves in my arms and legs feel like they are on fire constantly coupled with shortness of breath and intense chemical spilling out uncontrollably into my body. I had slight relief after convincing a doctor to prescribe a month or two of Rifaximin for SIBO/ gastrop eresis. It didn't last. The only other thing that helps somewhat is wearing compression on my arms, legs, and stomach. Yes, arms. I don't typically have high blood pressure. Sometimes I feel like I'll pass out in bed just laying down (not sleeping). My heart rate was 47 a few nights ago. But I also get bursts of tachycardia upon sitting and standing. Tachycardia somewhat improved by Xolair injections. Torture for 9 years now.
@@ktmist I am using rifaxamin as well now for past 2 year’s its part of Nemechek protocol but I’ve dropped the fish oil. I’m using vagus nerve stim and rifaxamin. I’m in a horrible flare atm but I’ve had periods of feeling much better able to get up and do light stuff without passing out .. I honestly don’t know if anything helps this whole thing seems to go in cycles I’ve been dealing with it for 10 years. I do know stress of any kind seems to set it off
Hi Garrett, You may want to join us at the forum on my website - Prettyill. Diamox is not a cure for POTS, but many folks with POTS or dysautonomia go on to develop hydrocephalus. It is hugely underdiagnosed. THAT is what the Diamox will help with. Unfortunately, I didn't get improvement with Midodrine, but many people do. Actually, non on the "traditional" medications helped my son and I. Learning that antihistamines helped us was AWESOME, though. Lots more to come on the forum! Hang in, OK? ;)
Is it possible to have this and low blood pressure. I have these symptoms and hand temors but my heart doesn't race all the time and my blood pressure is low.
I have both extremely high and low blood pressures after post Covid. As high as 212/123 as low as 82/74
Hi Shelley, I'm so sorry to hear that, but if it is any consolation, I hear of similar patients on a regular basis. Some were diagnosed with bipolar disorder, only to have that changed when hypermobility was found. I do not think hyperadrenergic folks are the only group to display these mental challenges, including depression and suicide ideation. It seems to be especially prominent (my gut feeling only!) in hyperadrenergic POTS, though. Hang in, my friend....
Wow. this sounds SO much like me. thank you. I've been treated horribly. i have EDS
Dreamerqueen Music , Does EDS cause hypotension as opposed to hypertension? I thought EDS causes ortho static hypotension and can result in syncope?
I'm finally getting around to your ACMImimi Fellowship applicaton. You rocking out at the end of your videos is priceless (and worthy of admission into The College! ;-)
SOOOO Validating!! Thank you.
I'm so sorry you are dealing with this beast! It was horrible for me, but there are ways out! Kent, if you get stuck in your journey for answers, please know that I am working full-time at POTS Care now. I have a special place in my heart for those dealing with this form of POTS. xxoo Dr. D
Thank you for the video. I think I have this!!! 😭
footballmontana, Did you try antihistamines as I mentioned? Xanax helped me, antihistamines were hugely helpful, as was Cymbalta. I didn't do well on beta-blockers, but everyone is a bit different, I'm afraid. If I had to recommend just one medication to consider, I would choose an antihistamines first. Can you discuss trying this with your doctor? I hope it helps, while we sort everything else out... This condition can CERTAINLY drive us crazy! Been there, got the T-shirt....
Are there any studies on the PERCENTAGE of EDS patients with Akathisia ? I used to have POTS horribly when I was younger, and as I aged it got so much better. However, the Akathisia only when I lay down at night is horrible, and remains so. Since it is only when I lay down, (just like the POTS was postural also) I am wondering if in some way this is related. Heart races, high blood pressure only when laying down, etc. No fear. So it is not panic. But just life changing. I can not work any more because of it. No drug withdrawel, ongoing torture every night.
Dr. Diana... I have EDS & POTS. I have been suffering terribly with POTS for the last few months to the point that on some days I am completely bed bound. I found diamox has actually made my POTS worse as it causes my body to expel fluids faster than I can take them in. Zyrtec & Zantac have helped, however I only take them during spring a d fall when my MCAS bothers me the most. Mycardio has me on midodrine... I've been on it for two weeks.. No help. What's your experience with midodrine?
Yes, I'm for real! I wish I was an actress, playing the part of a chronically ill patient, actually. My hubby has (unfortunately) had to duck a few times... NOT FUN... :(
Hello I have been watching your videos for over a year now I have pots and eds and unfortunately now I am getting more and more ms symptoms. I have been bed bound for 9 months now and it doesn't help no matter how sick I am I am to scared to stay in. All I wanted to no really Iis would you do a video about ms and why do eds suffers get all this. I have watched your ms and eds vid butI would love to see a video about ms please, thank you so much just watching your videos gets me through xxx
Wow I can relate to much of this.
Where are these articles you're talking about? I looked on your website and can't find them.
soooo what do we do about it
chris mcclure , how are you now??
Thank you!!! I've recently been diagnosed with hyper pots & knew I had high norepinephrine levels, but didn't know what it meant. There is just not enough information out there.
I can't find this article on either the potscare or pretty ill websites but I know several people who would benefit from understanding this. My husband has this subtype, and while I understand how these episodes effect him, others close to him don't and I'm sure you can imagine the misunderstandings that could possibly come from that. Is there a way you could point us more specifically to the link for this article please??
Ty💘
I have this and rsd and will be taking my life soon.
Michele, I DO understand how miserable this can be! :( There are many causes, but there are medications that may get you *some* relief while you and your doctors look for the underlying cause. I survived with Xanax for a while! If POTSCare.com can help, please let us know. xxoo
Dr. Diana, thanks for replying. I was misdiagnosed for many years. I went to a cardiologist who still didn't diagnose me. Then I had a respiratory infection when my symptoms became severe and was put on .5 mg of klonopin for my tremor. I was still misdiagnosed then a neurologist suggested dysautonomia. He sent me to a Dr who ordered lumbar picture, which was botched and injured my spine and caused a spinal fluid leak. I developed rsd and severe insomnia. It made my POTS so severe and my symptoms won't let up. This video describes exactly what I'm going through. I can't improve. I am taking 1mg of klonopin. Among other meds. I'm so disabled, I can't recover. I don't think there is any hope.
@@michele5695 don't give up hope. I'm so sad for you. I too am disabled.I hope you are doing well. I am currently in the process of being diagnosed. I also deal with severe chronic pain and depression. I know how hard it is to keep going 😞
@@michele5695 do not say that!!!!!you are not alone ...be strong .God is testing us!
Hello I'm really missing your videos and I hope you and your family are in good health x I have started having a lot of swallowing problems and now only weigh 7 stone I'm 5"10 I have hypermobility and pots I no you can't really say to much but perhaps a vidoe to see if any others are suffering like this, I to scared to go back to hospital I had to leave as the refused to allow me my heart meds for fear of choking so I kept collapsing it was awful then I got the sick. Please any advice I'm crash
I will be getting a brain MRI with contrast to look for MS next week too. Do EDSers generally show positive if they have MS symptoms? I have stretch myelopathy (the disks stretch 27% when they should be about 17% and not over 20% in my neck). I think that the damage to the myelin is causing symptoms that mimic MS which is also damage to the myelin but by a different cause.
So I am guessing they will see nothing on the brain scan.
I feel like my dizziness is more at the front of my head is this typical?
Does it cause pain on your Joints , mine happens on the left side it's horrible , I feel in pain and nauseated too I get scared and cry . What helps with it what meds ?
Don't keep it a secret. I need some of what your on. I'm suffering bad with this Pots and Eds. Goin Crazy !!!!
How do I know if I have POTS or or ist?
I understand, lauratunes12... I think I am one of the severely affected -- which has been a blessing to help me figure all of this out! My daughter is not as affected, but my son was MORE affected. I'm studying our genetic differences for answers and look forward to sharing this TON of research ASAP. Big hug...
Really very interesting topic..thanks for your reply. My older daughter is on a very strict diet but my younger one no. I think I will take her this summer to get tested for EDS and also get some food allergy testing.
you may just save my life ...lets hope i can get duloxetine or histamine blockers
Don't give up!!!
OMG. OMG. Ross! Thank you SO MUCH! Hey, everyone, this guy is a ROCK STAR in so many ways, a caregiver, a doctor, and a special man who understands how important music is to most everyone, and especially to us spoonies! Be sure to check out ACMImimi! You'll hear lots more about it from me, FOR SURE! ;)
I think this is what I have but wasnt formally diagnosed. It started right after a nasal procedure - does that make sense?
I think it is, David. Many of us are "triggered" by an event -- for me, it was a virus. Perhaps yours was trauma or anesthesia? :)
I'm not sure what I have. I've been told my whole life that I have low blood pressure (my parents and my offspring also all have low blood pressure) and that's why I have the symptoms that I do. Can I have anxiety, tremors, sensitivity to caffeine, pre-syncope upon standing, feeling faint in heat or a hot environment, true vertigo, lightheadedness, GI issues, brain fog, fatigue, chronic pain, etc with just low blood pressure or should I be pressing for more of an answer? My Dr says I just need to increase my salt intake. I have been all my life. I douse my food with salt. As a kid I was made fun of for how much I salt my food. I don't eat a meal without salting it first. And it doesn't help my symptoms. I've been passed off by so many Drs because I look healthy on the outside. I exercise (I'm a fitness instructor) and it doesn't help, either. I live my life in pain and exhaustion. I'm tired of wasting money on tests that come back normal but I'm even more tired of feeling like I'm 80 all my life. Any direction is appreciated.
check if you have mast cell activation syndrome and if so dr might prescribe anti-histamine H1 and H2
Oh my Goodness!!!! Help!!!!!I am miserable! I am in Clonidine hell! Feels like a vial of adrenaline is broken inside of you!
It did for me, too! If I can help you, I am now practicing full-time at POTS Care. Hang in, my friend.
The pollution of our planet and our food supply is causing all sorts of issues. Some of what causes these problems to be worse in some people rather than others has to do with genetics. A very serious issue is nutrition. First you must get the vitamins & minerals you need, second you must learn what helps your condition, third you need to do some experiments or research to discover how your body absorbs what it needs.
Id Love love love to send you a private message BUT the instructions to contact you with a private message is killing me. I know you know what i mean. The technology is a double edged sword and I’m spiking just trying to get thru the instructions. Breathin like I’m giving birth, any suggestions?
Kent, you can call the office if you're interested in coming in as a patient. If not, I try to answer as many questions as possible on the forum at Prettyill dot com. :)
DUUUUUUCK!!! Gangham style!!!!
;)
Really great info! Thanks!
Is it possible to have hydrocephalus/mast cell disease in EDS and dysautonomia if you don't have hyperadrenergic POTS, but just the normal kind. You are amazing! Love x
Thanks so much 16sweetkxs88kiss, My doctors ended up being afraid of me, mostly! It can be scary for them when they don't understand our condition, I'm afraid. I know what you mean about having to do the research ourselves! I think that is true with most of us, and it is a role none of us really wanted, I'm afraid. Stay strong, my friend
Yes, redtoffee, it is!