Freaked

Tachycardia and scary heart/chest feelings :-(

Been to the er like twenty times and was kept in overnight I think...4 times? 3 times when my heart was racing for ages or I had bad chest pain, and one time for neuropathy where my vision and reflexes had gone funny on one side. But they've seen me so many times now that my vitals or heart rhythm would have to be bad for them to keep me in; the other day I collapsed on the way out and they just helped me up...and out. My doc said he'd get me admitted, but never happened. Only surgery or critical patients get beds really, here at least.

I'm from Dublin and I've been very sick now for four months, and currently have no formal diagnosis and no one managing my condition, except I'm in a programme to help me deal with the psychological stress of it cos the hospital didn't know what else to do with me. My cardiologist the other day shocked me with his knowledge of the existence of pots; he acted like he'd never heard of it when I mentioned it before. He's sent me out a prescription for compression stockings, but other than that has discharged me, not considering it a truly cardiological issue. It seems like the only place that deals with autonomic dysfunction in this country is the fits, faints and falls unit in James's. I have an appointment with them for the end of July, which I was lucky to get, but I'm worried that even they won't deal much with pots. Has anyone found any cardiologists, neurologists or specialists of any kind who've helped them with dysautonomia? I'm so debilitated and depressed at this point that the end of July seems a very long time, and that unit is so high in demand I can't see myself getting frequent follow-ups there.

Know how you feel. Been suffering from bouts of vestibular vertigo since long before my pots issues. It makes you feel literally seasick; used to come down with it basically every time I got a cold. It seems like once it strikes, it'll just keep coming back. Mine did get less severe over the years though.

I'm suspecting that I have hyper pots too, kitt. I've always had hyperhidrosis (enormously excessive sweating; attractive I know) which muddies the water a bit, but my pots symps started with a flu and this strange spell of 'wired' insomnia. I could tell something wasn't right. Sometimes now I'll have surges and crashes, where I'll pour sweat, feel roasted and very awake, then I'll crash (occasionally announced by a collapse), become freezing and feel faint, feverish and achey. Horrible. I had a test for an adrenal tumour and apparently my catelcholamines were normal that day, but I was loaded on benzos as usual and also had one of my most remarkably stable days, so I don't know.

Thanks for the replies; it seems a lot of us have different probs with eating. I was sort of hoping that for me, the sweating was due to the effort of digestion (I've always had hyperhidrosis and these days I sweat whenever I'm standing), and the reflux was affecting the vagus nerve and giving me the skips. Still scary though; I keep thinking of those movies where the overweight bald man gets all sweaty and complains of heartburn and has a heart attack at the dinner table. I'm a normal weight 21 year old girl so it feels weird to be getting all sweaty and indigestiony after a meal :-/

I'm finding dinner tough going these days. I feel way better when I eat a lot, but while I'm eating big meals I start getting sweaty and reflux and sometimes skipped beats. I know eating big meals is a problem for a lot of people with dysautonomia, but it feels very scary sometimes. Anyone else get palps from big meals?

Thanks for the replies; it seems this is a pretty common problem then. I'm actually of the excessive sweating group; I've had hyperhidrosis all my life and it seems to have gotten a lot worse since my pots symptoms, probably because i feel overheated so much. I sweat when I eat, when I have to be upright for too long, when I'm hot and when I'm not. It's like I've developed a thyroid problem except apparently I haven't.

Ugh, these are awful. Sometimes they've just been so bad I've had to go to the hospital, but sometimes the best thing to do is treat them like panic attacks. Lie down, keep your breathing slow and read a book or play a game. Try to 'ignore' the symptoms as much as you can and take a benzo if you have one. But sometimes they do just hit me too hard to ignore. Had one last week that triggered possible SVT, or at least an instant POUNDING heart, and I just went 'call an ambulance!' Was lying down at the time too. By the time the ambulance came my heart rate had gone back to about 90 and I was just shaking and numb all over. I'd been fighting really discomforting pains before that. Apparently it wasn't a heart attack, but god was it scary.

My doc prescribed me lexapro the other day cause he's very anti benzos (which do seem to help me). Read the leaflet and it said to be careful taking it if you had heart rate problems standing up. Needless to say, that put me off. €80 for nothing.

We're getting the first really nice spell of summer weather here in literally years (climate change is not working out well for us), and I'm discovering that I can no longer tolerate the sun for longer than ten minutes. I was lying out in my bikini, and I noticed that pretty soon my heart was going 104 just lying there. No houses here have AC either, so indoors is pretty uncomfortable too unless I'm sitting directly in front of a fan. Keep waking up with headaches. I've always loved the sun and sun holidays, so this is a real bummer for me. Anyone else get extreme heat intolerance? Is it to do with the blood vessels dialating?

Thanks for the replies; interesting about the norepiniphrine transporter deficiency. I swear, living in a small country is the worst when it comes to rare disorders. We just don't have enough specialists; I don't know where I'd find someone to look into something like that.

Thanks for the replies; yeah I can be pretty sure that my heart is structurally normal at least. Had an echo and cardiac ct angiogram due to my lifelong history of chest pains and more recent pots symptoms. Had stress tests years ago, but no recent one for some reason, so when my heart does anything odd under strain I get a bit freaked out. Still, I don't think arrhythmias are normally to be blame for my symptoms, since I've had plenty of EKGs and felt my pulse when I've been feeling crap or having tightness and they were normal rhythm. I suppose I'll have to put it down to stress and strain, but it's still unsettling to think it might be effecting my heart's rhythm :-/ Think I had an episode of SVT last week just lying on the couch. I've also been getting twitches and pulsations like crazy the past few weeks, in every part of my body. Anyone else notice a correlation between body twitchiness and heart stuff? Maybe my nervous system is just frazzled or something.

Haven't got a confirmed pots diagnosis yet, but I certainly have a lot of these symptoms :-/

Twice now after mild exertion I've felt my pulse because my heart was pounding, and it was irregular. I suffer the occasional pvc/pac, and I assume this is a longer run of them or something. It's only ever lasted a few seconds, but I worry that someday it will last longer or be dangerous. Any other pots sufferers get runs of irregular beat after they push themselves? Is it dangerous?

I think I may have pots, though can't be sure yet. Has anyone else with it felt like they had a fever almost constantly? Like a really bad one? My temperature is normally fine, a little on the low side, but that's what it feels like.

This is really inspiring for me to hear. I've had suspected pots for three months now and don't have an appointment with someone who might diagnose me until the end of July. You're so lucky in America you have places like the mayo and Cleveland. I can't even walk up stairs upright atm. I was starting to do some light exercise but then I started getting more chest pains and skipped beats, which scared me. My cardiologist has abandoned me because my tests were normal (though he didn't order a stress test because I'd had one as a teenager). I'm very scared to start exercising with no guidance, so for the moment I'm a cripple.

I have breathing problems too, and weird sensations/pain on the left side in particular. My chest is very tender to touch, and lying down can be very difficult due to the heavy feeling and spasms that go through to my back. Chest ct normal; waiting on lung function. About a year ago, before my other symptoms began, I started getting that forgetting to breathe thing. Now my main problem is the sudden or persistent feeling that it's hard to breathe or I'm not getting enough air. However, and I can only speak for myself here, but I've noticed that my oxygen levels on monitors have mostly been fine when I have this feeling. There are reasons dysautonomia could cause breathing problems, but breathing is also a ***** whenever you're anxious or as soon as you're conscious of it. For example, many of my perfectly healthy friends and family now have this problem simply from seeing me have it, which is hilarious. It could be that our general weakness and nervous system problems are causing us to hyperventilate almost constantly, which makes many dysautonomia symptoms worse, and hyperventilation makes you feel air-starved.Due to nervous system involvment, dysautonomia does share many symps with anxiety problems. And now, after thinking about my breathing for this whole post, I think I may need to go pass out

Very interesting! I've recently come down with pots (I think) following a series of viruses, or maybe the same virus, that I couldn't shake. But the dizziness and nausea weren't exactly new features for me, because I've suffered from ear-induced vertigo spells since I was fourteen. Basically every time I'd get sick and have mucus. When I was twelve I had a terrible ear infection, and apparently my ear drum should have burst but didn't because it's too thick. My right ear felt blocked for years after that and I think it may have wrought some damage. The only new sensations I've had with pots have been the heart rate, pains and adrenaline stuff; vertigo made me fall over many times and completely drained my body to the point I could barely move. And I have noticed that sometimes my pots dizziness feels distinctly vertigo-ish, as in it gets worse when I move my head and can go with weird ear feelings. I wish most doctors understood the nervous system better.

Nope, Ireland. With our grand population of 4 million people, we have a fits, faints and falls clinic here in Dublin that seems to be the only place that deals with autonomic dysfunction. Very long waiting list. My cardiologist has basically discharged me, and I literally can't find any specialists who deal with dysautonomia before July. I agree I wish they'd repeated my stress test; been trying to arrange one myself. Does my condition sound at all familiar to pots sufferers?

3 months ago, I started getting prolonged episodes of tachycardia when i came down with a weird recurring flu. Instead of going away, my exercise intolerance got worse and worse, cold hands and feet, sweating, vomitting, faintness and dizziness. I now get bad and very disturbing chest and referred pains as well, particularly when I'm lying down. I have real trouble keeping food down and I've almost blacked out a few times. I'm only 21, but the one thing that makes me worry about my heart are the bad angina-like pains I've had my whole life when I run. Been to cardiologists and hospitals and had EKGs, echo, bloods, 24hr holter, chest CT, and CT angiography today. Haven't gotten the formal results of the angiography yet, but I've been told everything else looked fine. Had stress tests years ago that were apparently fine. Unfortunately there's only one (sort of) dysautonomia specialist in the whole country, and I don't have an appointment till July. I have the textbook heart increase when upright, but could POTS really be this severe? I've been left on my own, am out of money and can barely eat because of vomiting or sleep because of the chest discomfort. I'm so weak it's hard to describe.