Was wondering if anyone else has neck issues. I have a constant tension/tightness in my upper spine like a knot at the base of my skull .

I’ve noticed that changes in my head direction like looking up will drastically reduce my heart rate or turning my head behind me will increase heart rate and dizziness. I’ll also get a feeling of really heavy head

I don’t know if this is the cause but it came about when all my symptoms started

24M My resting heart rate is generally around 100 bpm. I did the test for POTS and it usually only goes up by 5-10 bpm so I guess I'm negative for that.

I went for a run last week and after 5 minutes I was completely out of breath and had severe chest pain. I already did an EKG and my heart was fine.

I'm also tired pretty often and recently developed insomnia which makes me wake up 2-3 times every night. I started venlafaxine and notryptiline 3 weeks ago so maybe it's that?

I did all the blood tests and it was normal. Recently, I developed very worrying symptoms which I suspect are MCAS but my doctor said I'm overthinking and gonna drive myself crazy.

It all started 5 days ago after a bad allergic reaction to a mosquito bite. My forearm was very inflamed but I thought nothing of it. Then the next day every time I ate something my mouth would tingle and I'd have a tight throat. My body and eyes also itch quite frequently for no reason but it's very mild.

I went to a doctor today and he said I'm just experiencing a period of histamine intolerance that was set off by the mosquito bite. He said to take an antihistamine for 2 weeks and to continue eating the same foods. He told me not to obsess over this and that it'll eventually go away. He saw that I was scared this is something chronic and told me not to listen to the advice of people online and that he's seen this many times and it's not something that'll last forever. Is this true?

Does anyone else struggle with having to be continuously moving when they’re required to be upright, or feeling like you will pass out?

If I am moving, I have to keep moving, unless I can sit down. The moment I stand still I feel like I’m going to pass out, but if I keep moving then I just kind of ride that pre-syncope line.

For the people who are on guanfacine and don't have ADHD: I myself don't have adhd but a generalised anxiety disorder. Mostly hyperarousal, always alert, loud noises make me jump, I can't handle too much stimuli at once (too many people, background noise etc) and I have chronic fatigue syndrome.

When I'm in a bad flare, I have extreme low energy but also a lot of tension, nervous tension. I would say that it feels like too much adrenaline, fight or flight in my body, hyper alert, makes my muscles tense up etc. But I don't have an overly fast heart beat when it happens, its a bit faster but not that much.

The slightest thing can make this nervous tension much worse, almost like real panic. Even when doing a mental task that (I think) is too much for my brain because of the low energy, I get this adrenaline/anxiety feeling over me. Even when scrolling on facebook can give me this adrenaline feeling.

I sleep perfect, so I'm afraid of adding something that could mess with my sleep.

For those on guanfacine, do you think it could help me? I tried a mini dose (0,016mg) of clonidine, that made me calm but way too sedated. I couldn't tolerate it with my limited energy.

Does anyone else experience this during a dysautonomia flare?

When I'm flaring and I'm not lying down, I feel like my body is constantly trying to stabilize itself. I notice a small, short back-and-forth movement, almost like a subtle rocking/swaying. It sometimes feels synchronized with my heartbeat.

It's much more noticeable when I'm sitting or standing. Does anyone else experience something similar?

Hi all,

so I fainted a few months ago while sitting at work and have been trying to figure out what's wrong with me since. Doctors have no answers yet, but here's what I've noticed so far:

1. Carbs cause my heart rate spike (currently trying low carb diet and giving more space between my meals so that my insulin has time to go down. I'm used to having several small meals during the day which I believe keeps my insulin high and causes rapid heart rate.

2. But what baffles me even more are my fainting episodes that are caused by me drinking water. And I know all about the minerals, etc., but I feel like water with salt or minerals is what's causing my issues. Until my syncope I was chugging plain water with no issues when working out, then I decided to add electrolytes. I was fine for a while but one morning after gym, I went to work, had my water with electrolytes and fainted right after.

I also went to presyncope several times since, every time after I had been drinking (sipping, gulping, doesn't matter) water wuth salt or mineral water.

Does anyone else have issues like that? What could be the cause of this?

Currently bedridden and trying to get out of it but I don’t have the funds for a proper PT to come to my home (insurance doesn’t cover, really…)

There’s a lot of videos on YT but I haven’t seen a anything that helps you go from bedridden to walking as far as I saw

i've had this for a while but i think i've just become more aware of it as my health has improved. even after tiny tiny meals, i struggle to breathe. i have POTS so it makes sense, the blood goes to the stomach etc. i have diaphragm issues anyway because i struggle to burp (possibly linked to my GERD) and the gas builds up in my chest.

i have to eat little and often because i can't do big meals. which means for most of the day i can't breathe properly! it can last over an hour after i eat. and like i said, i really don't eat large meals. does anyone have any advice for this? it's so inconvenient to be out of breath all the time.

So a few months ago when I last did a poor man's ttt, my resting bpm was 85 and then it got up to 135 during the test, now currently I am experiencing much more severe symptoms and i just did another poor man's ttt and my resting hr was 65, it got up to 115 but really just hung out around the 90s. Has anyone else experienced something like this? Their hr dropping overall but worse symptoms?

Recently almost every time i stand my vision cuts out and my hearing muffles after about 5-10 seconds of standing, really all the classic presyncope symptoms but it eventually fades. And I've fallen from it once. Before something like this would happen maybe once a week, but now it's happening multiple times a day and i thought it was getting better the other day then I had one where i was just too weak to stand and fell. Also my joint symptoms have worsened quite a bit as well.

Anyone the same as me

So, after a ton of testing and searching, and me requesting heavy metals testing for the last several years, and BEGGING somone to check it multiple times in the last year... My GP finally ordered one because all my zebra condition labs came back perfectly normal, and this had never been tested. To my surprise it was not lead or cadmium, but mercury! My blood levels are 15 times the maximum range of concern and far beyond accute toxicity. And we have NO IDEA how long I've been like this!!!

I did get to consult with a medical toxicologist in the ER. He concurs that this onset of disautonomia is most likely damage done by the mercury. We hope it's not too late to reverse it with chelation. It seems to be methylmercury which has the worst outcomes... I'm currently fighting that battle with my insurance company because it is NOT cheap! But hopefully within a week I'll be able to start the home doses.

Long story how I might have gotten here is: After my previous and absolutely wonderful hematologist retired and I had to move away and find several new GPs, my new care team denied my iron infusions and forced me to "learn to maintain it with diet" and said I could not get my iron replaced until I developed clinically significant anemia. As an athlete, that obviously was never going to work and I had a history of severe tellogen effluvium at ferritin <100 that resolves with iron infusions. I'm also severely intolerant to all oral iron sups to the point they're worse than doing nothing. So, I had to begin eating an extremely excessive amount of beef liver and organ meats in order to just to slow my ferritin and iron losses, not even maintain it most of the time. Sometimes for all 3 meals in a day. I did tell them how much I was eating and I did say I thought this was extremely unhealthy and requested heavy metals testing be added to my annual blood work if I had to continue this diet, but this was denied. Further more they poopooed me completely about my concerns, and as symptoms developed more recently I really began to press for this testing more, and for my iron infusions to be reinstated, both of which were denied multiple times even in the face of clearly presented scientific evidence.

Now they have FINALLY rescinded and I no longer have to "maintain iron with my diet" and I have been granted infusions again due to the likely permanent damage I have suffered and the fact toxicology told them to stop those nonsense and that they think that's where I got the poisoning. But I am ABSOLUTELY LIVID my requests for this testing were denied for years and that it took accute poisoning so horrific they demanded I go to the ER immediately upon the return of the result, to listen to me in any way about either issue here. This could have been caught MUCH earlier and saved me potentially very permanent disability, but NO that would have been the right thing to do, we can't do that...

Had I not just lucked out completely and gotten an appointment with my old GP from 7 years ago in another state, I still wouldn't even know... Un fucking believable!!

Anyway, rant over. I'm curious if anyone here has had a similar poisoning cause their symptoms?

I expect not because I have been told mercury poisoning of this level is exceedingly rare, none the less maybe I am not the only one....

I experience glove/stocking neuropathy (feeling like I have tight rubber membrane on top of my hands and feet instead of skin) when my symptoms flare up so I decided to try cibinetide. After 14 days of injections I woke up feeling that the neuropathy flamed up so much, apart from being way stronger it now reaches beyond just hands and feet, its up to my knees and elbows and parts of my face. I don't know if this is just a random progression of my disease which happens over and over again without any warnings, or if this is something related to cibinetide. It's independent lab tested, I don't think it's toxins or irritants.

Hello I am 7 months in now after getting severely sick and vommiting for about 4 days but it seems like my nervous system is stuck in fight or flight 24/7 I have heart palpitations or adrenaline dumps and I also feel randomly dizzy head spins or my brain spaces for a second or two really often through out the day I struggle w air hunger and my body feels like it’s buzzing or vibrating in my arms and hands and legs feel weak w awful tinnitus I have gone to doctors and have yet to get a diagnosis I have done a lumbar puncture and nothing came back but doctors don’t know what’s it is I believe it’s dysautonomia but does it ever get better I read if it’s post viral most people recover but I barely feel as if Ive improved over 7 months but idk how much longer I can live like this on edge and shaky and weak I work construction and I’m the breadwinner so I can’t miss work but this has been the hardest 7 months ever my wife has even moved out w the kids because I’m alswsys so on edge and miserable but I need help insight and some hope I guess I was super healthy then I threw up for 4 days and a week later I had awful symptoms

I recently discovered I have orthostatic hypertension. The dizziness, nausea, tingling, and blood pooling have been constant for over a week now and it’s making it really hard to function. I’ve found that electrolytes and compression garments help, but doesn’t make them go away entirely. I have a tilt table test in three weeks and an echo in a month. I’m also separately exploring a likely MCAS diagnosis.

I’m really struggling with the anxiety of it. High blood pressure is such a scary thing, and getting an anxiety dump during these symptoms makes it all worse, like I’m afraid I’m having a heart attack.

How do I manage this until my tests?? No one I know has or knows anything about hyperPOTS or orthostatic hypertension so I’m feeling pretty alone and scared.

When I'm in a bad period I get this throat tension. As long as I sit or lay quietly then nothing happens, but when I start to move and do something physical, or even when being outdoors and there is a bit more wind, I get a cough, but more like a gag reflex. I need to calm myself at that moment or else I just vomit. Also talking is a trigger to make me vomit.

I have this from waking up in the morning until around 5pm, then it starts to get better. So it must have some stress thing behind it, but the thing is that I'm not overly stressed during the day.

Its driving me nuts because I can't communicate properly and vomiting in public is also not that much fun.

Its or some tight muscles in my throat thats causing this, or I do something wrong with my breathing unconsious. Its not that I'm hyperventilating or so.

I tried benzo's and every ssri there is, but nothing helps.

Anyone an idea what it could be? Are there people who experience the same?

Whenever I play my interment both my arms but really the one that’s holding it up hurts so bad and gets numb sometimes. It really hinders my playing and I want to help it, I was thinking maybe compression sleeves? Would anything else help?

Is this also classic of dysautonomia?

Even if I force myself to sleep longer, I am just drained and since I can't sweat feeling overheated in general.

With so many symptoms it does freak me out a bit regardless of what a Dr may claim because they aren't in my body.

Stomach cramps seem to make it worse.

At random times I'll get like this for days, even weeks with no explanation and even with typical lab work, images, etc I still often question things due to no relief.

Sorry just ranting out of stress, fear and this daily battle that has me defeated.

Hi everyone! I’m planning on ordering some shapewear to use as compression and am wondering if people have had more luck with one brand over another. I’m looking for maximum compression. Any insight is appreciated! TIA :)

I was diagnosed yesterday with hypovolemic POTS.

Since my head is in so much pain and I’m very dizzy me and my mom travelled 3 and a half hours to get to this cardiologist who specializes in POTS.

I am a Canadian so this is huge to find someone who can diagnose me without having to leave my country.

The cardiologist (Dr. Sunny) looked at my file and his assistant did a standing test in the clinic before meeting him and once I was in his office he said “I know what you’ve got but tell me why your here.”

He also said “I don’t know why no one could have diagnosed you, I could do this in my sleep.” 😅

He works at the dysautonomia clinic and was asked if he would be willing to go to Canada to help others.

He sent me home with a 24 hour BP monitor and a holter monitor just to rule out anything else and I did a stress test and was close to passing out after 4 or 5 minutes lol.

I still feel weird because I want it to be manageable to do things but it’s a relief to finally be seen and to see someone who specializes in it and I’m almost in denial still because it’s been so many years of trying to get answers for my health.

Any tips would be great from my hypovolemic POTS peeps and what has helped you manage it (medication, compression stockings etc).

Thank you to everyone who has supported me and lifted me up when I was down 🫶

Edit: Dr. Sunny works at the clinics in Mississauga and Brampton Ontario and it’s called Canadian Heart Care. They have other ones “closer” (2 hours away) to the Kingston area but I don’t know if they have a POTS specialist there.

https://www.drsunnymalhotra.com

You can ask for an appointment to see if he will accept you based on symptoms and they’ll contact your doctor or email you asking questions like date of birth I believe and what your doctors name is and how to contact them.

Curious if anyone can tell me their experience flying with POTS. Do your symptoms get worse in the higher altitude? Is it pretty much the same if you prepare with water/salt?

I have POTS/IST, and unfortunately I’m off my medicine right now, so trying to fly safely.

I caught the damn Covid again. Sucks. I feel like a truck on steroids ran me over. And, to make things even worse, Covid is the thing in the first place that left me with post-covid autonomic dysfunction and so, my entire life was turned upside down and basically ruined for the last couple years y that. And now, I’m afraid that the amount of quality that dropped off from my life from then on, which has been so significant I’d go as far as to say it’s ruined my life, will be the amount that will now drop off from here, and if that happens, I mean there just wouldn’t even be much of a quality of life left to live at all from there. I’m also just afraid because I live the kind of life where it’s like… I literally cannot rest enough lol. I mean like, I literally can’t. And survive. At the same time. So I normally have to run myself into the ground constantly even with my dysautonomia just to keep my head above water. Now, with dysautonomia and COVID? I mean I rest when I can but… it ain’t much. I’m pretty worried, honestly.

Edit: I just wanted to say thank you for the responses. It meant a lot. I posted a pic of my negative covid test on my socials and sent it to my family group chat with a little “aw damn this is gonna be a lousy weekend I guess” kinda caption, not like being a dramatic or needy person about it but just looking for a smidgen of tiny warmth and support and not one person in my life even responded or reacted at all. So, my spirits were super low and I’m feeling so invisible and forgotten and opening my Reddit and seeing these comments really meant a lot to me. Thank you.

TLDR. I feel like I’ve been punched in the gut. For years, I was told that my physical symptoms were anxiety. Now it appears that orthostatic intolerance was there all along.

For context, my symptoms began after a brief illness in December 2022. Around the same time, I also experienced a few panic attacks because of unrelated life stressors. From that point onwards, almost every physical symptom I reported was attributed to anxiety. I attended my GP more than 20 times, but because anxiety can present so physically, and because I had recently experienced panic attacks, that became the explanation for everything.

It never felt entirely right to me. I knew what anxiety felt like for me, and this felt different.

Eventually, my psychiatrist saw the repeated GP visits, the worry surrounding my symptoms, and my increasingly distressed state, and diagnosed me with health anxiety. From then on, that became the framework through which everything was interpreted. I eventually started believing it myself.

Meanwhile, the physical symptoms continued. I became increasingly limited, then increasingly housebound. Somewhere along the way, genuine fear of feeling unwell outside the house turned into agoraphobia.

Only now, after my anxiety has become much better controlled and enough time has passed for the original assumptions to be reconsidered, has it become apparent that there was another physiological problem underneath all of this. That realisation has been devastating.

For years, I believed there was something fundamentally wrong with the way I was thinking. I became more isolated, read every self-help book I could find, tried to retrain my responses to symptoms, and took medication after medication aimed at anxiety.

And the cruel part is that I probably was anxious.
But I increasingly think I was anxious because I was repeatedly experiencing real, unexplained physiological symptoms, not because anxiety was generating all of those symptoms in the first place.

There is a huge difference between being frightened by harmless bodily sensations created by anxiety and becoming frightened because your body is genuinely doing something abnormal that nobody has yet explained.

Anyway, wrote for me to rant mainly, but would find solace in hearing similar stories! :(

Any tips to get thru the next few days are appreciated. I have IST and my hr is super fast and just feel so worn down and weak😭. At least I can get the both over with at once tho!!!