Freaked

Kayjay, yeah I've had that problem. Like you, initially it was freezing bluish limbs or numb arms, but I've since had episodes where my hands or whole lower arm have been burning. Left side effected worse than right usually, and I've had left arm aches too. My radial nerve seems to be worst effected normally. Also noticed a mottled red and white appearance to my hands at times, like you'd get with chill-blanes (the sore itchy feeling when your exremities are warming up after being outside in the cold; not sure what other places call it). No theories to offer unfortunately, except it's probably either a circulation or neuropathy issue (obviously).

I feel for you. I was at a point where I couldn't keep any food and barely any water down for days, and hospitals didn't care half as much as you'd think. If I was lucky I got a saline drip and some powerful anti-emetics. Sometimes they were like 'just drink water and eat' and it was like 'you don't seem to understand my problem...' Food was just sitting in my stomach and then hours later it'd come back up. Went to my doc and I've been on strong proton pump inhibitors (omeprazole/esomeprazole) to stop acid production. They help but I seem to be becoming immune to them. Benzodiazepines (xanax/valium) help, but not all the time and I need to be on them constantly. I had stomach probs on and off before my POTS symps, but it's made them ten times worse. Is the drug you're on an anti-vomiting or a proton pump inhibitor?

Thank you! I just sent my hubby out for magnesium and potassium supplements for me. I took one 400 or 500 mg potassium pill and tomorrow I will try the magnesium.. I like to take both separately incase I have a reaction so I know which one did it to me. I have gotten real hbp on a vitamin suplement before I'd be very careful taking a potassium supplement without a doc's supervision. It can get too high on supplements and that's bad. Docs normally only prescribe potassium supplements for a few days here to stabilise levels, and you can't buy them without prescription. Also, many foods contain high levels of potassium (says Google) so afaik it would be unusual to be deficient in it from dietary reasons, at least from what i've read and my docs said to me, unless you have a very unusual diet. Do you eat dairy?Also, I said the the thing about eating cos I'm awful when I'm hungry too. Don't know why; I have unexplained raised pancreas and liver enzymes but my blood sugar is apparently normal. I think it's either an insulin thing or a blood volume thing for me. Possibly both.

Hi, Hanice. My only area of actual study is neuroscience and psychology, so all I can offer other than that is my own personal experience and research I've found, but I can say that your symptoms sound very similar to mine. And good lord, I would stay away from nutmeg. As I'm sure you've since learned, it's a toxic hallucinogen that leaves people in severe pain after a few teaspoons or a couple of actual nuts, and probably to be avoided if you have autonomic dysfunction. Most of us seem to be very hypersensitive to toxins. To my untrained eye, it seems like you're experiencing the classic hypoperfusion and subsequent adrenaline response (which often doesn't show up in urine catecholamines if it isn't constant enough). It seems like the myristicin in the nutmeg further damaged whatever is wro5ng with your nervous system. In a strange way, this could help in your understanding of what that actually is. The potassium defiency is interesting, and something I have also experienced despite more than adequate dietary intake. My best guess is that it's increased stress hormones causing the kidneys to flush out potassium, but it could also be a different malabsorption issue. Either way, it does help to get it stabilised. It's unlikely you're getting too little in your diet, in my opinion. In terms of what I'd recommend, I can only share what's worked for me. Ask your doc about benzodiazepines to stimulate your parasympathetic nervous system better than valerian. This may help with your shaking/twitching, cold hands and feet and maybe enable you to retain more potassium. I would suggest that you eat two bananas a day if you can and take magnesium (which also helps with twitching), as the two minerals work in conjunction and it isn't included in a blood count normally. Up your vit D with sultanas or whatever since it can't hurt. If you don't like the idea of benzos, you could try using a combo valerian and passionflower supplement as studies have indicated that passionflower is more reliably effective (evidence for valerian isn't great iirc). I would go back to recumbent exercises, stay hydrated as usual and eat a whole lot. I would not cut out salt just cos your bp is high standing. Don't overdo it, but don't cut down too much. These are the things I've done anyway, and I at least managed to stabilise my potassium, and heartrate a bit. Oh, and happy birthday!

I get this pretty bad at times. A metallic taste in my mouth is a warning sign for me that my body is behaving odd. I had it all day one day, and during that day I felt horribly weak, fainted for the only (touch wood) time, alternated bewtween poring sweat and being freezing, and had to call an ambulance for a scary heart episode. Two trips to the ER in one day. For me I think it's either a hypoperfusion issue or something to do with my heart (heart stuff can cause metallic taste. Maybe because of hypoperfusion; not sure.) Many people report metallic tastes during adrenaline rushes, and they can be commonly caused by stomach acid. I also have a largish cyst in my head, but don't think it's related. I do get weird phantom smells at times too, particularly smoke, and I think it's important to remember that POTS can cause seizures. Probably as a consequence of hypoperfusion, possibly related to O2/CO2 balance and neurotransmitter levels. Actual seizures are rare (approx 3% I think) but other neurological disturbances such as blurred vision and twitching are common, so minor misfires such as phantom smells and tastes shouldn't be surprising.

I used to get night time adrenaline rushes, but lately my symptoms are normally better half an hour or so after dinner and when I'm sleepy. The only exception being that it's very warm here at night atm, which doesn't help with sleeping or symptoms. Ironically, this night time respite may be related to a largish cyst on my pineal gland producing more melatonin (the body's sleep hormone) than normal. Also, there's the lying in bed factor, which does mostly help. I'm also constantly starved, and even though digesting can cause symps at times, it seems that dinner is the only meal that really fills me enough to calm my system. My blood sugar has been fine, but I have raised pancreas and liver enzymes and I think something weird going on with eating, insulin and adrenaline. Pre-dinner hunger is often my worst time of day. I'd guess diurnal rhythms effect those of us with hyper-pots symps more than others. I also normally stay up pretty late just to enjoy feeling okay.

If it makes you feel any better, I have had issues like yours. My BP fluctuates, but my vitals have been okay generally (touch wood). However they have kept me in for a few other issues before, including an episode where the vision in my right eye felt shadowed and I lost reflexes and coordination on that side, interspersed with episodes where it felt like my head was going to burst with pressure. The reflexes and sensation haven't fully come back, but my head scan was fine other than a cyst that they didn't think was a likely culprit. Had another ep where my whole spine went stiff and kept fading in and out of delerium. Keeping food down has been a terrible problem for me at times; I lost a stone in two weeks at the start, and that put me underweight. Proton pump inhibitors have helped with this, and weirdly benzodiazepines, as I think some of it was sympathetic nervous system overactivity, or parasympathetic underactivity. An IV saline often helped me regain a lot of equilibrium. You need to keep some food down however you can. You'll get into a pretty bad state otherwise, if you're anything like me. Lately I've managed to keep myself going (barely) by shoving as much food into me as I can. I have raised pancreas and liver enzymes and i think I may have real blood volume issues; I also have the bladder probs you mentioned and have spent a lot of time in 'brain fog' and weakness even lying down. POTS can get this bad at times if your system gets into a downward spiral, but I haven't been diagnosed with anything yet (appointment with autonomic specialist next week), so I can't offer you any theories there. I'm seriously starting to think underlying lupus, but haven't been tested and docs are at a loss and/or don't care. The psychosomatic drivel was also suggested to me.

Started getting pains in my legs and hips lately (have pains everywhere else, so why not; haven't been tested for things like lupus yet, but might be just fibro or something) and it just got me wondering. I've been very sedentary since this all started 5 months ago. I know that many potsies experience blood pooling in the legs, have blood vessel constriction issues, poor circulation to the extremities and can't walk around much. These are all very much deep vein thrombosis risk factors when untreated (and a lot of us go untreated for quite a while). Has anyone's doctor discussed this with them? I can't find anything discussing it so far, though haven't checked the medical journals, but I assume if we were at a significant increased risk of pulmonary embolism from DVT it would have come up?

Just curious to see, since docs have no answers about this and some still insist chest pain isn't a POTS symptom. Hope you don't mind that I made votes public; wanted to see if different people get different 'groups' of symptoms. You can pick multiple answers to every question. If I left anything out let me know.

Last time I exercised consistently I started getting increased skipped beats, which may have actually just been a sign that my heart rate was slowing, but that freaked me out enough to stop until I get proper guidance. Now I'm pretty bad with it. I did surprise myself when I was wearing an event monitor though. I managed to stand up and walk around for half an hour, twice, without fainting or losing my vision much or anything. Then some days I can't walk two steps. Can be quite unpredictable.

Very true; I've certainly read conflicting theories about the pain. Some docs think it's cardiological and others insist it isn't. Sometimes mine is definitely muscular, but then sometimes it feels 'different' and I can't tell exactly where it's coming from. My own cardiologist mentioned spasming after a scary episode one night, which depending on what he meant can be very serious. But he didn't seem at all concerned.

I also get a seizurey head feeling and visual ickiness. Not sure if that's exactly what you mean.

Felt so crap earlier had to go and sit outside the hospital until the pains went away. Glad to know I'm not the only POTS sufferer with this. I asked docs on healthtap why we get left-sided pains more often (as do anxiety and costochondritis people) and of course answers ranged from 'don't know' to 'pain is not a symptom of pots'. Sigh. The one thing i do wish I'd had done cardiologically is a proper thallium or echo stress test. I never hear of people getting them done here but I can't believe they aren't when they're so popular in the US. I know my arteries are clear (had them scanned) and that apparently my heart is structurally normal. But I've had chest pain when I run all my life (I'm 21) and I always worry that some sort of coronary spasming might be going on. Though I don't know how that could explain my POTS symps. I do have severe reflux problems, so that might be contributing. But then you hear that can be indicative of heart probs too, so :-/

Thanks for the replies. Here again today with bad pains in my left arm and feeling crappy.

I was sitting on my bed and started getting painier pains in my left arm than usual. Then follows heart rate bounding up to 120, sweating and an intense need to vomit (the heaving made me have an ectopic or two). I've had these kinds of episodes before, though the left arm pain has gotten worse lately, and they looked at my heart. Had echo, ekgs, enzyme blood tests and ct perfusion coronary artery scan which were all okay. Cardiologist suspects pots and have my ttt scheduled for the end of the month. But these episodes still terrify me. The regular heart rate jumps when I stand are bad enough, as are my stomach probs. But these eps that combine a bunch of heart attack symps... Ugh. Just came off anxiety meds today so maybe that's having an impact. Anyone else get these episodes?

My symps came on over just a few days as I was coming down with a bad flu. They were at their worst (touch wood) during and, to a lesser extent, for the month or so after the fever. Since then it's been a little better thanks to increased salt and a lot of water i think, but I have had some bad days and scary episodes. Can't say I've had huge improvement for the last few months though, possibly because I haven't been diagnosed yet and am too afraid to exercise.

Had an endocrinologist appointment the other day and he said my thyroid was enlarged and firm (that I had a goitre in other words). My TSH levels have always been normal, but he tested me for TPO antibodies which would indicate hashimotos disease and maybe other things. My mom actually has hashimotos but don't know my results yet. Any other POTS people have enlarged thyroid?

I have sinusitis (and vestibular vertigo) and pressure sensations. Also a vegetarian. Have wondered about metal poisoning at times but can't think of any possible source.

I have everything except the sizzling, lumps and high iron. The high iron levels are interesting though, and would fit nicely with a blood volume theory I've been thinking of. Have you had your blood volume tested?

Yeah I get this, particularly this summer when my normally mild, no-one-has-AC city has inconveniently turned into a furnace. The best way I've found of coping with it is to keep water and food (and meds) for the morning by the bed and have them before I get up. Means an extra half hour in bed while I digest but worth it.

I get this terribly when my BP drops. Feels like I'm walking through jelly and lifting my feet out of quicksand. Sometimes it's so bad I just have to stop for a while, and it tends to go with blurring vision/presyncope.

It does sound like episodes of low blood pressure, which can be brought on by eating in some dysautonomia people as blood diverts to digestion. Your heart goes fast to compensate and you can get upper body pains. I read of a girl with POTS who passed out every time she ate for a while. But have you been to a cardiologist or had a holter or event monitor to rule out arrhythmia?

Great poll; two very interesting things here imo. One, if you find that you're short of breath and your oxygen levels are fine but your carbon dioxide levels are low, that's hyperventilation. It's common amongst sufferers of fatigue disorders; the body seems to overcompensate by breathing too much. Our fast heart rates will also automatically make us more inclined to hyperventilate - your body is used to heart rate and breathing rate working in conjunction. Two, Chaos, that's intriguing. I noticed during my pulmonary function test that, even when I was totally out of breath and dizzy, my oxygen never went lower than 96 or 97. It's often at 100. Inefficient oxygen metabolism would in fact explain...basically all pots symptoms, afaik. I hope some docs are looking into this somewhere.

Thanks for the replies everyone. Margiebee, I've also been, uhm, known to become obsessive, and like you the wondering drives me nuts. I do know that if pots was a more potentially fatal diagnosis, it's likely it would be taken more seriously, but like Hope I do sort of worry that they'd just diagnose you with something else post-mortem, like Prinzmetals. And then people would be like 'ah but it wasn't the pots that got her, it was the Prinzmetals' (yes I do worry that I've had artery spasms since coming down with pots). MomtoGiuliana, it is reassuring that more forum members don't drop dead (touch wood), but then if I did, I'd highly doubt anyone here would ever know about it unless I told people to announce it specifically. But yeah, longitudinal studies on pots survival rates are mostly pretty encouraging, and I try to tell myself that. I suppose I just always have the worry at the back of my mind that this isn't just pots. I've had fairly severe angina-like pains when I run my whole life and was investigated cardiologically a few times in my childhood and teens, so when I came down with pots symps my fear was and is that it might be a worsening of some underlying condition that's hard to find, like microvascular dysfunction. My cardiologist has basically given me the middle finger at this point and I think my parents (ie the money) would go nuts if I said I wanted more tests atm. Thanks to everyone who suggested trying to sit out and enjoy stuff. I do and I used to be pretty good at that sort of zen thing, but unfortunately the heat atm is really not agreeing with me :-/ I feel like, whatever this is, it's stripping away so many of the things I used to enjoy. I just want to go to the bloody beach. Maia, I agree, if they keep telling us our hearts are normal then they should really keep looking until they find what isn't.

I'm having real trouble with this. I've had such scary episodes since all this started, and when it comes to my heart I just have trouble ignoring stuff. For example, I notice now that when I lie on my front or certain other random times, every heartbeat tickles. Not skipped beats or anything, cos my pulse seems to feel regular when it happens, but I don't know what it is. I don't know what any of this is; docs told me a bunch of times my heart looked fine, and yet it goes so fast whenever I do anything and I feel so bad. I hate things I can't understand, and when it comes to post-viral pots no one seems to know anything about what actually causes it. They just tell you that they don't think it kills people. Well good, but how can you know for sure when you don't know what it IS? And that's why we get these half-measure treatments that aren't actual cures. Sorry for the rant; I'm just sick of feeling so fatigued and sick and BAD all the time. It's very hard to believe at times that I'm actually 'okay'.