Freaked

My adolase (liver enzyme) has also been persistently high throughout my pots symps and my pancreas enzymes too. No possible explanation given as to why, but have yet to see endocrine or gastro specialists.

I've found saline ivs really helpful at times when I've felt really bad. Some docs have offered it, some have looked at me strangely when I asked but were like '...sure', and some have been like 'well I don't see the point. Just drink some water.' Sigh.

Interesting article, but I don't necessarily buy the diet thing. It doesn't really explain why pots etc comes on people after flus or other physical ordeals, and I for one rarely went near sugary drinks or anything artificial, for all the good it did me. Hated them as a kid. I do know that the last time I accidentally ate msg (in fried rice) I had a terrifying episode where my heart beat so hard I was scared it might 'tear'. Didn't even think that was possible until now :-/ Could have been a coincidence, and I never had msg intolerance before my pots symps, but terrified of it now.

Dana, I don't know how things work where you're from in terms of procedures, but if you went into a hospital emergency department with your symps here they'd get you a scan that day or the day after, and then you could see a neurologist after that. Would something like that be possible for you? I knew a woman with your symps once, and it's probably a completely different thing, but time can be important where vision is concerned. If something's pressing on a nerve or anything, the sooner fixed the less damage done.

Hahaha, know what you're saying about the house next to the hospital thing; wished that so many times. I never used to be like this either - I was 'the stable one' and a psych student to boot. I'm on benzos all the time now. I learned in great detail what they do to your neurotransmitters, but flip it, nobody's helping me in any other way. My pots symps are so bad I find making it to the bathroom or kitchen very difficult, and I'm just doing whatever I can to not feel so bad. Withdrawals have been terrible at times though, but xanax in particular does seem to help with some of the sweating and nausea (pretty sure i have hyperpots), as well as helping me not to freak out. I agree with you on passionflower; helped me sleep through the night when I first got sick, but didn't 'knock me out' either.

I'm afraid I can't say that I have. I've certainly had temporary vision loss (when upright), and once it felt like there was a shadow over my right eye for two or three days. Also lost a fair bit of sensation and reflexes in the region and my whole right side (confirmed by docs), which never seemed to fully return. My coordination on that side did go back to normal at least (touch wood). Had a head mri that revealed a largish pineal cyst they didn't think would have caused my problems. Lack of blood to the head can cause many strange symps and they still don't really understand the relationship between pots and neuropathy, but certainly keep getting yourself checked out and a scan asap if you can. That's really the only definitive way check for a lot of stuff.

Hi Gemma; yeah from what I've read about it in studies, Prinzmetals spasms should show up in an ekg, with signs similar to heart attack and opposite to regular blockage angina (don't know why). However I don't know how 'reliably' they show up if you know what I mean. If your pain was ischemic, the magnitude of pain doesn't always reflect the magnitude of ischemia, so you could have very mild ischemia and quite bad pain, whereas some people have heart attacks with hardly any pain. A stress test wouldn't show prinzmetals because typically it happens at rest. The test is a cath with a triggering agent to see if you go into spasm, but most cardiologists are reluctant to do this unless they've seen evidence of ischemia. You're not the first dysautonomia person to notice their pains are worse on benzos or beta-blockers (ie when their hearts are going slower). The reason our hearts go fast is to make sure we get enough blood, and so when they're not going fast we do seem more prone to upper body and particularly chest aches. Some docs think these are heart related and others don't, so...yeah. Either way, it doesn't seem to significantly increase heart attack risk, or so I keep reading and trying my best to believe. The pains could well still be costo; sometimes you need to press on the bone or spaces quite hard to reach the tenderness, or it may be chest wall spasm too deep to reach. Or they could be non-cardiac circulation aches, like growing pains you get as a kid, though these tend to be dull. Sharp, localised pains are more often musculoskeletal than circulation or cardiac, if that's any reassurance. Does your breathing or position effect them at all? How long do they last?

I feel very bad for my boyfriend since this all started. I used to be one of those always in the mood people, even if I wasn't feeling great. But since I got sick, just no. No on the mood front, and very no on the stamina front.

Thanks for the replies; helped me not to freak out too much until my event monitor on Monday. No idea what my blood pressure was like beforehand, but I've had hypotensive probs before and I felt terribly weak. I've also had adrenaline surges before, but just not like that. I really never would have believed my heart could beat that hard. Hopefully it was just some weird extreme compensation thing.

Anyone? Really wondering how this might relate to my condition, or if it's a sign I have something moret than pots (like I say, docs didn't seem to have theories either way).

Hi gemma; good to know the doc thinks you're fine. I know it's very frustrating when they say different things though. It sounds like the other doc suspected Prinzmetals angina, which is something I've worried about myself, though my cardiologist didn't think I had it and it certainly wouldn't normally explain most of these symptoms. Also, artery spasms supposedly show up on an ekg or monitor if you're having the pain at the time, if that's any reassurance. I remember one day I happened to be having this horrible feeling like there was a weight attached to my heart as they were doing an ekg, and it was normal, so that reassured me a little. I asked if you were right or left handed cos most people get left-sided pain and are right-handed, but obviously that doesn't fit with you. You could have costochondritis; has anyone mentioned it to you? It basically just means your chest muscles and cartilage are sore, and the pain is often like you describe. Is there any spot you can push that hurts when you're sore? I have it like crazy atm from overbreathing all the time. My chest feels like someone comes along and beats me every night, and sometimes it sends pain up my chin or whatever that really freaks me out. Looneymoon, I get the tremors too. Pretty sure it's just part of the same sympathetic nervous system overactivity (or parasymp underactivity) that enables the tachycardia. Adrenaline basically has to play a role in sustaining a fast heart rate I think (though not 100%), even without hyperpots.

I haven't actually been tested for POTS yet (scheduled for the end of July) but the other tests I had done were normal and I have the trademark symptoms, plus I'm a 21 year old girl and my symps started with a flu, so my cardiologist thinks it's pretty likely. But I had one or two episodes I don't know what to make of, and docs have no particular theories. Basically one day I was having a really bad pots (or whatever) day. I went to hospital cos I felt faint, actually fainted, but was sent home cos everything looked normal and I'd already had a bunch of tests done. Spent the whole evening after that feeling AWFUL, like I had a terrible fever even though I didn't, and I had this icky metallic taste in my mouth. Earlier that day I'd been roasting and pouring sweat, and in the evening I sort of crashed, dried up and got very cold (this happens to me lately). Anyway, I was lying there with these aches in my face and arm and chest, feeling really weak and my heart going slowish for me these days (in the high 60s/low 70s), when suddenly I felt this buzzing all over for a second, and my heart took off POUNDING at about 150 (can't be sure exactly). You would not believe a heart could beat that hard; it felt like it was going to beat itself out or something, or someone was hitting me from inside. Terrifying. Yelled to my boyfriend to call an ambulance, and by the time they got there fifteen minutes later my vitals were normal, except I was numb and tingling all over from hyperventilation. At hospital the tests were normal. What's weird is, the pounding heart seemed to make the pains go away. I was looking for them, and they were just gone, and started to come back slightly the more my heart slowed. And after the episode, I didn't feel half so weak and feverish (still had the awful taste for a while mind). So was this my body's way of reperfusing itself and keeping itself conscious or something? Was the buzzing I felt an adrenaline release? Was it sort of like MORE BLOOD, MORE BLOOD NOW! Cos I don't know what to think otherwise. Has anyone had any similar experiences?

I'm a fairly normal weight and height for a woman (a little over 5'6 and 120-126 pounds; I vary randomly), but before my POTS symps started I do feel like I was eating way too infrequently. I'd gotten into the habit of going from breakfast to dinner with some apple juice and maybe a few crackers in between; feeling hungry to the point of faintness was basically the norm. Not in a diet way; it was more that eating at college was a real pain and I kind of couldn't think what to have for lunch at home. I've been very used to hunger since I started writing obsessively at 13 and got into the habit of forgetting to eat. Now, I just cannot do that. I'm starved all the time, and if I don't or can't eat I pay for it majorly with faintness. My digestive system actually starts shutting down then and rejects everything, and I get into a horrible vicious circle that's ended with me on a drip more than once. Honestly, at times I've felt on the verge of coma or something, even though my blood sugar always read as okay. My blood pressure starts to drop when I get bad though, so I tend to think it's more of a hypovolemia problem, or just bad circulation or something. I can't help but notice that a lot of people here do seem to be on the exceptionally skinny side, though. I definitely don't think this would be a representative sample of the population in terms of bmi. Maybe a lot of us have messed up metabolisms, or have messed them up ourselves?

Like many, I've had numerous presyncope episodes and even falls, but also just one (touch wood) where I actually lost time for a few seconds. I was in a hospital (cos I'd been feeling so weak) and I'd just been sitting in a chair getting an EKG done for the umpteenth time. I got up, walked a few steps and then just got this sudden feeling almost like I'd been hit in the side of the head. I just had time to shout, and next thing I knew my boyfriend and the nurse were holding me up a foot off the floor. I don't remember falling or them catching me, but I came to pretty quick. The nurse was not at all concerned as she'd just done an EKG on me and knew I'd had other heart tests and a head mri, so she just sent back out to the waiting room. But that was not a good day. They tested me a bunch of times later for orthostatic hypotension, which of course I didn't have cos my heart was just racing and pounding instead, which they saw but didn't know what to make of, of course. So they sent me home feeling like i had plague and begging them for any kind of help, and later that evening I had a really scary palps episode that resulted in me calling an ambulance.

Garggling. An unexpected trial. I find myself hunched quite a lot because the more upright I am the worse my symps normally. I do manage to walk upright most of the time (for the short distances I can walk), but the other day I was garggling with salt to help sore tonsils. Put my head all the way back and felt a bit weird but manageable, put it down again and nearly passed out. Don't know if it was a vagus nerve thing, but it did seem to trigger the slow, pounding heart for a few seconds that I associate with vasovagal faintness. Happened every time I did it, and the only thing that helped was to move my head very slowly. Certainly not something that ever happened to me before POTS; sudden position changes just seem to be a no no. A lot of my falls or stumbles have been bending at the sink in fact, or reaching up suddenly is never a good idea either. Needless to say standing in the shower is out of bounds for me these days - heat, standing, bending and reaching. Recipe for POTS disaster.

Unsurprisingly I suppose, it seems that weird heartbeat stuff is something a lot of us deal with. I'm hopefully getting an event monitor this week at least, to catch it if something funny happens, or at least be sure of what's going on when I'm walking around and my vision starts to blur or whatever. I plan to go to the nearest hospital (just in case anything bad happens) and walk outisde it till i feel terrible or pass out (shouldn't take long), just to really get my money's worth and maybe some peace of mind. Gemma, I've had chin/chest/neck pains all my life when I run, of precisely the sort described with angina, except that would be weird in a four year-old. Was stress tested at 12 and 15, and they didn't really reproduce the pains but were normal, as well as echos. But in the back of my mind I just sort of thought I might have a heart issue, didn't push myself beyond my limits and hoped it wouldn't kill me young. When i started getting pots symps four months ago I thought 'uh-oh', well at least after 'AMBULANCE!' and started to worry that I may have had congenital artery abnormalities all along after a cardiac nurse mentioned it to me as a possibility. So eventually after many months of me going crazy with worry my cardiologist agreed to order a cardiac ct angiogram, which was apparently normal too. So...yeah. Like many here I have symptoms suggestive of a lot of different things, but the only heart thing I know of that would really fit all of them would be heart failure, which I like to think they would have caught. Out of interest, Gemma, are you right or left handed?

My cardiologist and gp both left a lot to be desired throughout all this. First it was 'post-viral' because it started with a bad flu, then when it didn't get better they were basically just like 'go away. Seek counseling. ' How something post-viral had suddenly turned into something psychological was never quite explained to me. Needless to say, I found new doctors, though I still have to do a lot of hounding. As for symptoms, I haven't even been diagnosed yet, so I have no idea what's what. The heart tests they did came back normal except for the frequent sinus tachycardia, but I get a lot of different symps and don't know what's normal or who to ask, and then anxiety and panic muddy the waters too.

Thanks for the replies; I'll definitely check that website out, Katybug. Yeah I considered cushings, but I don't have some of the other symps and in a 24hr test my stress hormones came back as normal, so shrug. TCP, I'd say you'd find a lot of us here had other 'weird' issues going back a long way. Dysautonomia is such a complicated issue and there's still so much they don't understand about most sorts and what exactly causes them. Also, I knew someone who had knee dislocation problems. Granted, she was a major drama queen, but it certainly seemed to hurt like ****, so sorry to hear it's a problem for you.

Haven't gotten the results of my pulmonary function tests yet, but pretty sure it won't be normal. The guy kept making me do it again and again, convinced I must have more air left in my lungs and wasn't blowing it out. Maybe I did, but I was certainly exhaling as much as I possibly could. They gave me an inhaler and made me do it again, and again, and no difference. I get shortness of breath, chest wall pains and reflux/vomiting a LOT; pretty sure my diaphragm is weak as crap or worn out. My blood oxygen levels were fine throughout though, though my heart rate was tachycardic as usual when I've been upright too long. I've heard other people with pots say their pulmonary function tests were abnormal.

Was bedridden for two months when I first got sick (kept expecting to get better), then when it became clear I had something more than a post-viral fatigue problem, I started moving around the house more, and even managed to go to a friend's for an evening. Then a stress programme (my mystery illness gave me terrible anxiety) forced me to actually get out of the house and sit up straight in a chair every day, but made my symps a lot worse. So, most days I can get out of bed, but it does still make me feel like crap four months in. However the only treatment I'm doing atm is high fluid and adequate salt intake; not very tolerant to beta-blockers and afraid to start exercises without a doc's guidance, which I'm pretty sure will be necessary if I'm going to recover. Atm, it's either house, medical place or boyfriend's house for me.

I came across EDS when I started looking into POTS, but sort of dismissed it. However, I can't say that I don't have weird skin and other issues associated with EDS, because I do. These are the symps I've had lifelong: Abnormal scarring (ie instead of shiny pale patches I get matte dark patches that look like bruises). Skin that docs have said is abnormally thick, both external and in ear cannals (don't know about other places). Skin that anyone who touches my hands says is abnormally smooth (and then calls people over to feel it). Slight hunch at top of back. Lifelong reflux issues Ibs at a very young age. Hyperhidrosis (insanely excessive sweating; the hand touching thing only happened if they weren't dripping at the time haha). My skin has a painted appearance, as in you can't see veins or colouration the same way you can in other white people (for example the back of my hands). Flat and abnormally small feet, small mouth. I always just shrugged off this stuff as a lame way to impress my friends with my freakishness, but does any of it sound familiar to EDS sufferers? I never thought my skin was that stretchy, but when I compare it to other people's now it does seem to be. But don't people with EDS normally have quite translucent skin, or does it depend on the sort?

I've come down with severe panic, anxiety and agoraphobia since my pots symps started four months ago. I just didn't know what was happening to me and thought I might have been dying. I still fear that sometimes, since even though I've had heart tests done and I have no idea what heart thing could be causing all of my symps that they wouldn't have seen, I haven't actually been tested for pots yet and have no doc to discuss it with. So when I start getting pains or start feeling really bad I still freak out and feel like going to hospital. I've been getting 'help' for the panic, but it only helps a bit since they're inclined to tell me it's all in my head which leads to a roadblock since it isn't. I've told them that my other docs don't think it is, but my god are psychiatrists stubborn. But I go to them for the benzos, which don't help with the orthostatic intolerance, but sometimes seem to help with nausea and flushing. As for agoraphobia, I can't go anywhere where there isn't a defibrillator and/or one of my 'safe people' there. I just feel very physically ick all the time, have had a few traumatising palpitation episodes and am so afraid often that any moment might be my last. Pretty sure that if I do have pots it's the hyperadrenergic sort, so that wouldn't be helping me mentally anyway. Never used to freak out over health stuff much at all. I'm afraid I can't offer much helpful advice to you right now anyway. I'd know what to say if you just had panic disorder (final year psychology student), but having an actual physical issue does complicate the matter as I've found. It takes a very zen attitude to not care if you pass out in front of a bunch of strangers who start freaking out :-/ Hopefully one day we'll both get to be that zen.

I haven't really started an exercise program yet, since I haven't been diagnosed and I'm too freaked out now to try it without guidance. I did do a bit maybe two months back, though. Recumbent stuff since I was bedbound at the time (and still amn't great) but I think it was helping. The only thing that set me back was I went through an icky spell of ectopics that scared me, but other than that I was actually feeling a bit better. The ectopics may have actually just been a side effect of lowering my heart rate I suppose, like how you tend to get them at the end of a flu instead of in the middle. But if I push myself too much with upright stuff, I normally pay for it majorly with feeling crap. I'm just not well enough atm.

Well, I've been debilitated for four months; it's taken this long just to test for some heart stuff I was afraid of because my cardiologist was so hard to keep in touch with. Don't have my tilt table scheduled till the end of July, so...yeah.

Yeah deffo mention the diverse symps, and how debilitating it can be. So often when you turn up to docs or hospitals with different issues they just write you off as a nut. I've been told 'somataform disorder' before, just cos my heart tests were normal and I was still having symps. If I see that arrogant sob again there'll be some words.