Freaked

Really sounds like dysautonomia to me (orthostatic hypotension in someone of your age is mostly considered a form of dysautonomia in and of itself). Unless they find something else underlying (which they probably won't if they haven't at this point), I'd say you're very likely to be diagnosed.

My main problem is tachy, but lately I've started getting longer spells of a lower hr. Mostly just about 60, but that's enough to make me feel faint. Not on meds atm. It's like this slow pounding for me, and I'm pretty sure it might be a vagus nerve thing. It often coincides with periods of increased pain in that sort of distribution.

Nope. I feel a lot worse standing mostly, but I can feel very bad sitting or even lying down. The tachycardia is worse standing, with occasional exceptions.

I have such extreme shortness of breath after eating atm that I just can't eat. The pains in my left arm have also gotten ridiculous. I wake up with chest pain and have constant itching pain in my chin, plus a feeling like something's stuck in my throat/chest. I vomit sometimes. Been to the hospital like four times over the past week; feel like I'm on the verge of a breakdown. Anyone else with POTS get really short of breath after eating?

Thanks for the replies! And thanks for the recommendations about docs, though I should clarify that I'm not actually in Canada (unfortunately for treatment). I'm from Dublin and the only POTS doc I've heard of is from Canada. Ireland's not great for anything rare and not life-threatening - it's just assumed you'll go somewhere else in Europe. But that's disruptive, especially if you're too sick to travel easily, and not cheap. It's so frustrating we all have to spend so long badgering doctors. You'd think the medical profession would care more that previously young healthy people were so incapacitated, but unfortunately it doesn't always seem to work that way.

HI dmjl27. Really sorry to hear of your struggle. I also have to have my legs raised all the time and don't leave the house except for medical reasons or to get straight into bed at my boyfriend's house. I don't know what I have other than orthostatic hypotension and POTS. It may well be just extreme POTS and the other autonomic issues that go with it, but I can't say I've had any autonomic testing beyond the TTT. I also suffer from chronic chest pain, lot of tachycardia and fluctuating BP; it *****. Must be tough to pass out so much; I only passed out once, but it would happen a lot more if I tried to live a normal life atm. I admire how you're still trying to do what you can. It's so easy for illness to drain the fight out of a person. Btw, did you say your symptoms started with an illness?

I came down with POTS six months ago and have been left basically untreated. I went to an autonomic clinic but they 'don't like diagnosing POTS' so they're just treating me for the hypotension and prescribed me fludrocortisone. Unfortunately I often have low potassium and I have hyper-POTS so I get blood pressure spikes; not sure if the fludro is going to work out for me. Had a bad few days when i was on it - my heart wouldn't go below 100. The clinic views the fast heart rate as a good thing cos it stops you passing out. So they didn't give me any exercises, don't know much at all about POTS as a condition and are only seeing me every few months. My cardiologist didn't view it as a cardiological condition either. I'm basically wondering how bad POTS can get in this situation. My heart rate is high, i get skipped beats, I can barely walk at all, suffer really unsettling chest/upper body spasms, often feel sick and sweaty or vomit. Being 21 and housebound, plus really physically lousy feeling the whole time, has started to get to me mentally and it's been hard trying to find help for that too. So far the only real lead I have is a Canadian cardiologist Dr. Glover in the city who has helped people with POTS, or at least he used to a few years ago if doctors here haven't shamed him out of it yet. I was basically wondering if other people have been so debilitated, or for so long?

Yeah sometimes that happens to me too. I still feel pretty bad when I'm walking though and quite faint. Sometimes my heart goes suprisingly slow when I'm walking, about 70, as if my vagus nerve is kicking in or something.

I get a fair amount of chest pain/discomfort. Unlike you my cardiologist didn't even do a stress test cos I'd had one six years ago for chest pain while running, and I had to push for a ct angiogram. I'd also had a chest ct, but I looked up how dangerous cts are and apparently you have to get like 30 to increase your cancer risk significantly. The scan was apparently clear but I really had to get one cos of my lifelong history of pains - I was afraid I had congenital artery abnormalities. It's always a risk/benefit weigh up but the scan does offer some peace of mind about some things. I personally wouldn't risk the cath though unless there were indications for it.

Exercise is more about trying to retrain your system to be exercise tolerant than getting your heart used to going fast. Like you said it's already used to that. The more unfit a person is, the higher their heart rate in general and the quicker it speeds up. But that doesn't mean it makes you fitter unfortunately.

Wow, weird. Are they saying the heart doesn't beat for thirty seconds? That seems pretty terrifying. I know I have an exaggerated vagal response since I got POTS, but nothing like that, touch wood.

Well I started on the florinef, and had a pretty horrible two days. I already had low potassium beforehand and I've had pretty bad cramping and heart racing/ectopic beats. So I've come off it again until I can get my potassium better monitored.

Yup. My symptoms first came on with a virus and viruses always seem to make them worse, even if I don't realise I have one yet.

Thanks for the replies everyone. Well I ended up in hospital again. This time I cried and begged for any kind of help but they just told me to start on fludrocortisone (a doc told me not to cos of a kidney infection), gave me one xanax and sent me home. They said they'd leave a message for the mental health team i'm supposedly seeing but that was the day before yesterday and so far nothing. I hate this - before my POTS symptoms started i'd never had any kind of emotional problems. Anyway, between starting on the florinef and being in withdrawal, I'm keeping a close eye on my blood pressure (the diastolic can be pretty high for some reason).

Yep, hypereflexia. Common in anxiety and those of us with adrenaline issues.

I have hyper POTS and I'm in xanax withdrawal. Had to go to hospital yesterday for recurrent chest pains. Can barely eat. Can barely sleep. I shake and sweat and heave. My hr is often around 100 resting; went up to 150 yesterday when I was freaking out. Get skipped beats and sudden hard or soft beats. I feel very bad and I worry about how much my body can take. Anyone else been in such a state?

Yep. Where I come from POTS is barely a thing, so if your BP isn't always low when you stand then docs have no real suggestions. Surprisingly though, I've been in to one of the big local hospitals so many times with chest pains and palpitations that they're taking an interest. I'm due to start on fludrocortisone and they said if it hadn't started to make a difference by the end of the week to come back in and they'd look into things more. For free!

Yeah I get this majorly at times. Normally it only lasts a few seconds but during my TTT it was like someone had stuck a phone in there for the last few minutes. Seems to be unrelated to my pulse. I get weird pulsations all over; I think it's my hyperadrenalin issue.

I had a crash a bit like that once; was a bad day. I could barely move, went into hospital, my body poured out insane amounts of adrenaline to keep me conscious (felt like I was cooking), passed out momentarily anyway, got sent home from hospital, and then later that evening... I just felt so bad. My adrenaline was all used up, I was freezing, felt like I had a terrible fever (was probably more like hypothermic, that's normally the way), upper body aches, close to unconscious, and my HR was in the 60s instead of going fast (low for me these days). Then I thought I was having a heart attack. After buzzing all over for a second my heart suddenly kicked into tachycardia with such force that I just yelled for my boyfriend to call an ambulance. I did feel way more conscious during and afterwards though and the tests checked out okay in hospital. So that's the only theory I have for you - adrenaline depletion. Benzodiazepines have helped me control these crazy swings if I don't push myself too much. I've also experienced terrible vomiting at times with POTS, and it can put you into a downward spiral fast, considering how dependent we are on water and salt. Have you ever been tested for Addison's disease? If that BP was accurate, it's awfully low. My mom's bp was around that when she had an over-reaction to general anaesthesia, and the docs were kinda worried. She was pretty much in a coma. Are you sure you were...actually conscious?

I was prescribed a low dose of fludrocortisone yesterday, and was wondering how other people had found it. I have POTS with definite hyper-POTS tendencies and occasional BP spikes. Did you find it helpful to your symptoms? Did you get any of the side effects like weight gain in icky places, worse tachycardia, low potassium or worse sweating? High bp? Did you manage to come off it eventually, and how did that go? Never known anyone on it and a bit wary, so any accounts would be helpful.

Congrats on getting diagnosed! I had my ttt yesterday and they are pretty rough. Stood for forty minutes, almost passed out a few times and my body pulled all of its tricks out of the bag to keep me conscious. But at least the docs got to see them. I was also afraid of getting called crazy or something. They also went straight to meds for me (fludrocortisone) since I'd been doing the salt and water stuff for months. Out of interest, are NCS and vasovagal syncope different or the same thing? I've seen different sites say different things.

I went to an endo and thus far waste of time. Had already had urine catecholamines which were normal (on a very asymptomatic day with a lot of xanax). He seemed to think I had some sort of blood sugar issue (I have severe eating-related symps) but didn't seem concerned. He said I had a goitre and ordered a blood test for TPO antibodies, but then I got a letter saying the lab hadn't checked for them at all and to get the test done myself. So. But I do think POTS may be a very endocrine issue, relating to renin, aldosterone, ADH and maybe adrenaline (hard to know if adrenaline issues are a cause or effect or both). I know this is a theory many specialists have regarding our low blood volumes, but I'm not sure what if any research has been done. The fact that fludrocortisone helps many potsies provides some evidence. If they could figure out where the broken link in that chain was and supplement it directly, it might be almost a cure.

While I was sick first I couldn't even talk to my friends on the phone, which ******. I'd say this is probably part of your current blip and your tolerance for prolonged talking will probably get better the more you do it (did for me anyway, even if my exercise tolerance didn't improve that much). You might find that you're gradually able to read more each night. I'm also one of those who can't sing much now, which is annoying as singing and songwriting used to be some of my favourite passtimes, and I hate the idea of my voice/piano skills getting out of condition. Not a huge problem in the scheme of things, but it would be nice to be able to sit at the piano and write stuff again without feeling worn out.

Thanks so much for the good wishes! Well had my ttt and most deffo POTS (heartrate went from 75 to 145 without any provoking agent), but it turns out they don't like diagnosing POTS here. Instead they diagnosed me with a tendency towards orthostatic hypotension with fast heart as a response mechanism (so, POTS precisely). Anyway, they put me on fludrocortisone or whatcha call it so I suppose I don't much care what name they put on it as long as they treat it. Feeling pretty icky after my ttt. Stood for forty minutes and didn't pass out but felt disgusting with my heart pounding the whole time. Towards the end I broke out in an all-body sweat and got super hot but felt more conscious (confirming my suspicions of hyper-pots to me). Then I crashed, as I told them I would, got freezing and they couldn't find a vein to take blood from. Bit worried now, as some of my scariest eps were post-exertional. But I suppose it had to be done. Finally some medical help and I wasn't called totally crazy :-)

So after five months of feeling really sick, being housebound, getting bounced out of hospitals and called crazy quite a few times, I finally have my appointment with the only autonomic clinic in the country tomorrow. It's in the centre of the city and I hope we'll actually be able to get there at rush hour, but I've heard good things about it on this forum and elsewhere. I was lucky I got an appointment so fast due to my severe symptoms; a year's wait isn't unusual. And it's public too, so all the tests and consultations should be free. Which is good cos my parents have spent a lot of money, and I'm in serious medical debt, can't work atm and am due to be finishing my degree next year. This has literally been my light at the end of the tunnel over these past months. I'm writing a symptom list tonight and all my friends are wishing this goes well. If it doesn't...it'll make things a lot harder, and they're hard enough. So here's to hoping I'm fairly symptomatic tomorrow :-P