Does This Sound Like Pots?

[Freaked]

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.

[MomtoGiuliana]

It does sound like you should be evaluated by a specialist. Are you in the U.S. or another country? In the US there are quite a few specialists.

[jknh9]

I agree, it does sound like you should see a specialist if possible. If you're in the US, there are many doctors who are cardiologists or neurologists who also treat dysautonomia. It sounds like you're on the right track by seeing a cardio and doing those tests. Are they planning to do a TTT? And, just because your stress tests years ago were fine doesn't mean you would have the same results now. If you're in the northern hemisphere, the arrival of summer could be making you feel worse. A lot of us feel worse in the heat.

You could try to sip electrolyte drinks like sports drinks or coconut water. Coconut water seems to help me quite a bit, and it's a way to get some calories and vitamins if you're having trouble eating.

[Freaked]

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?

[Katybug]

Yes, it does sound like what POTS feels like. But you should make sure that all other possibilities have been ruled out as well. But I would definitely pursue a tilt table test to rule POTS in or out. I'm sorry you are feeling so crumby. I know it is shocking to go from healthy and active to sick and weak in a short amount of time.

[margiebee]

That sounds like POTS definitely but you'll want to eliminate some other possibilities as well (I had tests related to my kidneys, adrenals, etc). I am so sorry about your situation though, I hope things start looking up for you.

[Chaos]

It does sound like POTS. It also sounds like ME/CFS, especially when you mention the recurring fever/flu like symptoms. There is a lot of overlap between the two conditions. You might want to check out this other forum http://forums.phoenixrising.me/index.php as well for more info.

I know the UK doesn't offer much in the way of help for ME patients but there is a doctor over in Belgium whom patients are going to see from the UK who is treating with antivirals (in addition to a wide variety of other meds) to treat the immune system and the underlying cause of the disease as he sees it. He's very actively researching the biological causes of ME and apparently the thinking is that POTS is a symptom of ME which is caused by the viruses messing with the autonomic nervous system. He thinks the gut plays a huge role in the original pathology/onset of the disease. His daughter has ME so he is a fairly passionate advocate for patients with the disease.

Sorry you are having such a rough time of it. Really hope you can get some answers.

If you are vomiting so much, you may well be dehydrated which will definitely make your tachycardia worse. Can you keep any fluids down at least? That's quite concerning.

[Guest Alex]

Hi Freaked,

sorry to hear about your current situation, but hopefully you'll be able to get some answers soon.

Like others said already, your symptoms do sound like POTS and you should definitely try to see a specialist to have things evaluated properly.

Best of luck and keep us in the loop.

Alex