Freaked

I'm not on anything atm, just supplementing with small amounts of pure salt. I can't say I'm good, but a lot of that is probably because I have no exercise program. Any of the meds I've tried so far have just made me better in some ways but a lot worse in others.

Hope you're feeling better. The flu probably was the culprit. Don't hesitate to go in somewhere if your symptoms get too severe to handle.

Glad you had a good experience; it's always heartening. My last admission, for your exact issues actually, ended with the doctors saying they didn't know 'how much was actually wrong' with me and thinking I was over-reacting and making my myself sick (I was vomiting pink froth by the time i went to hospital) and my heartrate bananas. Needless to say none of them had heard of POTS.

Often, when I start getting bad with POTS, I'll take my blood pressure and notice that it's all over the place. One second too low, and the next going towards high, and back again. I suppose that's normal when your blood pressure is naturally low and your sympathetic system goes into overdrive to compensate. Does anyone else get these fluctuating readings?

Thanks for the replies :-) That's a good explanation, badhbt. Pretty certain I have hyper pots too, but I don't think I could be tested for it here unfortunately.

Before I came down with POTS (suddenly, during a bad flu), I was normally a very calm and composed sort of person, and I tended to come across well in serious contexts even if I wasn't exactly a social butterfly. But it's very difficult to be like that now. Just the effort of getting ready and being out of the house has normally taken so much out of me that I'm symptomatic by the time I get anywhere. So I find myself trying to talk to doctors or exam coordinators or whoever with a crazy heartrate, sweating, trembling and finding it very hard to sit or stand straight (doubling over or slumping makes my symptoms significantly less severe). And all the adrenaline effects me mentally too, making me lose my train of thought and talk in this jolty way like I've drank ten espressos. Basically I seem like Tweak from South Park. It's very frustrating because no one really understands. Most docs here have never heard of POTS, and it's a lot harder to convince them you're not crazy when you're shaking and can barely raise your head. And sometimes when I get a bad attack and start freaking out a bit, my family just don't understand that when your body releases that much adrenaline it makes you terribly agitated in a way you really have to fight. They don't understand that hyperventilation happens whenever there's a lot of adrenaline circulating, whether that's due to panic or low blood pressure. They understand what POTS is, but sometimes I don't think they really understand its effects. I just hate not feeling in control of how I come across. The only way for me to stay 'composed' these days is to sit with my feet out, well fed and watered, and not over-exert myself in any way :-/

I get something like this occasionally, though not exactly the same. It sounds sort of as if your peripheral blood vessels are dialating and causing your blood pressure to drop, and probably your heart to take off suddenly. Just a guess. Have you had heart monitors to check for arrhythmias? Do you have blood pooling issues with your dysautonomia?

I've suffered from the stubbotn tachycardia problem a few times. For me, it seems to be an indication that I have a temperature (one of my symptoms) or it's a reaction to something that's increasing my adrenaline, like benzo withdrawal. Are you on florinef? That gave me incredibly stubborn tachycardia. A benzo or passionflower to stimulate the parasympathetic system are the only things I can think of that might help if you can't risk stopping any meds to see if one of them is causing it.

Does anyone else get a horrible sort of chest tightness with POTS that makes you feel both short of breath and like you need to heave? I often do throw up with it.

Wow these tests are really interesting! I'm almost sure I have hyper POTS though I've never actually been tested, but I really would like to know if I have a hypovolemia problem. Must ask the doc about an aldosterone test!

I'm struggling to repeat my last year of college after I had to drop out last year when I came down with POTS. So far I've been doing everything from home, but I'm going to have to go in in a wheelchair for an exam on Tuesday and I'm pretty scared that I just won't be able for it (I have hyper-pots that can be pretty bad in stressful situations or even when my feet are on the ground in a chair). How has everyone managed work or education commitments with POTS? Did you have to take time out, and if so how much? Just curious.

Many docs think that POTS is on the same spectrum as ME, but we're 'lucky' in a way because POTS is more measurable. I think most people with POTS suffer from ME symptoms as well. The post-viral aspect to both suggests they may often have a common underlying cause, and I try to keep an eye on new ME research.

Interesting that others get the fevers. My cervical spine is also slightly abnormal with a mild hunch, but I don't know if that has anything to do with my POTS or some pains i get. I'm hopefully going to a pain specialist soon to investigate. But I wish I had a neurologist to discuss this stuff with. I don't think there's any who deal with POTS here :-/

The degeneration is interesting. I've been wondering about spinal involvement for a number of reasons. 1, I was wondering is it's possible that the ability of the spinal marrow to produce blood may be compromised in some way through degeneration. 2, I know that in post-viral ME, mild spinal chord inflammation has been one of the only abnormalities found (mostly on autopsy afaik), and this is damaging to the nervous system in all sorts of ways. Personally, ever since I've been ill with POTS, I've had a number of strange episodes that were like mild meningitis that came and went over a number of days (spreading stiffness, fever, feeling weird, but I apparently don't have lupus or anything). My back has also been in constant pain all along the spine. I was wondering if it's possible that some sort of low level meningitis (which does happen) and nerve damage might be the culprit in many of us.

This is relating to a theory that just occurred to me when I was reading about blood production (probably a wacky one) but just wondering. Was there anything abnormal in either, for anyone who had them?

Hi, just wanted say that you're not alone in scary chest pain. I've had them all my life when I run, and at other times ever since I got POTS. I've had basically the same tests as you and spent a huge amount of time in the ER. I don't know what to think about them. Twice since the POTS, the pains were followed by something that docs said sounded like SVT, a type of arrhythmia, but I wasn't wearing a monitor or anything at the time. I also worry about Prinzmetals or microvascular dysfunction, and I've made an appointment with a pain specialist to see if he knows of any non-cardiac causes of pain like mine (that occurs in the lower teeth/chin sometimes). One thing I did notice though was benzodiazepine withdrawal seemed to make the pains worse. I was prescribed them before I was diagnosed with POTS in case they helped with my tachycardia (which they didn't). But from about two weeks after I stopped them, on two different occasions, I started getting daily pain that lasted for a few weeks. Chest pain is a common symptom of benzo withdrawal, and combined with dysautonomia it's probably worse. Also, it's not a hard and fast rule, but doctors always say that sharp pains are more often non-cardiac. Hope you feel better soon.

Thanks for the replies. No I specifically didn't give him permission to write to my specialists, so hopefully reports won't find their way to them. It's so frustrating, my cardiologist calls my condition POTS to me but he doesn't put that in his letters. Another thing that weighs on my mind is the fact that I'm a psychology student and I was intending to be a psychologist one day, so I'm very uncomfortable about having a 'disorder' on record. Not sure what do about him; thinking about meeting him again with my parents or boyfriend and asking him to justify himself, and if he still refuses to explain his reasoning or change the diagnosis then taking further action.

Yeah, hot water has been a complete no for me since I developed POTS. Mostly now I have lukewarm baths, and if I get in the shower it has to be sitting down.

Yes. I feel like I'm a terrible girlfriend, daughter and friend. I can only imagine how guilty I'd feel if I was a mom. But being sick isn't your fault. It's not fair, and it's not your fault.

Before I had my TTT, I didn't know what was wrong with me and ended up in hospital a lot, where of course they never found anything to explain my heart rate and other symptoms. I've also had pain in my chest, jaw and neck when i run, for as long as i can remember, that no one's ever found a cause for. I was getting very freaked out by it all cos i could barely walk, and eventually they got a psychiatrist to see me. A psychologist was sent in to ask me if I'd ever had health problems, and I had nothing major to report, just mild stomach problems and occasional inner ear vertigo. Anyway, then the psychiatrist came in and said I had a somataform disorder. That's where your mind creates symptoms. He was a very rude, disheveled man and I just told him he was wrong. But I saw the psychologist now and then, who was nice, and eventually my TTT proved I had POTS and vasovagal syncope, though here (Ireland) they just sort of call it autonomic dysfunction and most doctors won't diagnose POTS. But the psychologist accepted that I had something wrong with me and said this would change our treatment approach to just dealing with the stress of the illness, and my lingering worry over the exertional pains I always got. But to my surprise, when the psychiatrist met with me two weeks later, he was unwilling to change his diagnosis, and said he wouldn't be letting me see the psychologist unless I let him write to every doctor I'd seen basically telling them not to treat me or do any more tests cos it was making me worse. Obviously I refused, and that was the end of that. But recently I was in hospital for five days cos I couldn't stop vomiting, which was starting to get bloody, and my POTS had gotten very bad. They didn't really know anything about autonomic dysfunction, and asked if it would be okay with me to see a psychiatrist. I stupidly said yes, and of course it was the ******* again. He was suggesting my TTT results were from deconditioning, and had nothing to say when I pointed out my symptoms were why I couldn't exercise in the first place. I asked him if he thought I'd been somaticising from when I was 4 years old and knew nothing about the heart, let alone that it could cause pain in the jaw, and he had no answers to that either. When I told him that the falls and black outs unit in a big hospital didn't think I just had deconditioning, he responded 'well they don't know about your history of mental illness'. I don't know WHAT he was talking about as I'd never had any issues or been to a mental health professional before all this. I also don't know what symptoms he implies I'm somatacising, and he won't give any answer. My discharge sheet listed three diagnoses: 1 autonomic dysfunction, 2 gastritis, 3 somataform disorder. What? So he wrote to my GP (PCP) essentially telling her not to treat me, and I'm afraid he's told her to say that to my two specialists, who call my condition autonomic dysfunction to me but don't seem to use that term in letters, probably becuase it's not a very respected diagnosis here. They mostly just talk about the symptoms they're treating me for. But I'm afraid to tell them anything about my predicament and lose credibility. I don't know what to do. My parents are talking about sending a lawyer's letter to the psychiatrist for his treatment of me, or reporting him to the medical council. It seems like he just doesn't want the stigma of misdiagnosis and is determined to make sure I don't see anyone else; he was really annoyed to find out I'd went to a private psychologist (who of course didn't think it was all in my head). I've never encountered a doctor like him, and unfortunately he's sort of a bigshot. I don't know what to do or what doctor will back me up enough when POTS isn't diagnosed by any doc I've found. I feel like I'm in a nightmare. Sorry for the essay.

That BP is okay, but it's possible to feel crap with dysautonomia even when your BP is okay. Is it possible you have vestibular vertigo? Any blocked nose or ears? Under 90/60 is considered low, but people tend to find they start feeling lethargic at under 100/65.

Thanks for the replies! I didn't think this thread posted. Still not doing great but part of that might just be feeling anxious and demotivated. No, no new meds so can't blame that. It's just that when my stomach starts getting bad, the rest of my symptoms seem to go to **** after a few days :-/

So I'm just out of hospital (5 days) for chest/jaw pains and persistent vomiting (have POTS, though i've always suffered from exertional chest pain). They didn't find anything but my hr has gotten so ridiculous that I can barely stand and eating is so hard. Having a really tough time and no one seems to be able to help. Sometimes I just feel doomed. I'm trying to ignore pains all the time and I'm scared to even go to the bathroom. Sorry for the whine just having a really hard time.

This may well apply to me and many other dysautonomia sufferers. I have chronic pain and my body temp is messed up. I get low fevers a lot of days.

Have hyperPOTS and for the last 6 weeks I've been getting a lot of low fevers of about 37.5-38C (99.5-100.5F). Sometimes they're daily. Before that it was mostly low body temp I was getting, which still happens now and then. My ANA, WBC and inflammatory markers seem to be fine, so no real obvious cause. They make me feel pretty bad sometimes though. Thing is, my doc has literally no clue if this is normal for POTS. She Googled it :-/ And my specialist is a cardiac electrophysiologist, but it didn't sound like he'd encountered temperatures before. Asked docs online and they said it wasn't a regular POTS symp, but no idea if they're right. Anyone else get this?