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Look Out, Another Newbie...


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I'm a 25 year old male, and my fun started about mid April. I was sitting at the PC doing some reading when all of a sudden something strange happened high in my gut that I hadn't felt before, and instantly started to worry for my life. It was a kind of intense pulsing sensation with no pain, it'd hit, last about 2-3 seconds, then go away, then hit again about 8-10 seconds later, and did like this for 10-15 minutes. At the same time I was pretty dizzy and having trouble to think. I woke up my girlfriend who was napping so she could keep an eye on me in case something happened. We ended up going to the Emergency Room. I almost always feel bad somewhere, and only feel almost normal when laying down. These dibilitating "attacks" still hit me about every 3-4 days and last for 30 minutes to 2 hours, seem to very somewhat on symptoms, but always leave me shaking terribly, and over all in a bad state.

All these months later no one can seem to find out whats wrong with me while I continue to feel completely miserable. Somehow I ended up here and was reading about how it is taking stairs, the burning/cold feelings, the fatigue and tiredness, erratic blood pressure and heart rate, and so on. All things I can more than relate to, along with the numb hands in the morning, tunnel vision and chest booming when getting up just to go to the other room, or out of bed. For me, my resting heart rate is about 45-105 and BP around 145/85, but can spike to 180/110, or drop to 100/60. I've had more tests and seen more doctors than I can remember, and my medical folder is probably thicker than any two other folders or books in the department, and they still can't find a single thing wrong other than my "slightly high blood pressure".

To top things off I happen to be in Paris France at the moment (but am American), and it's hard enough to find an english speaking doctor, let alone one that can tell me anything useful. Here all the visits have to be paid up front, then you get paid back by your insurance later. We're still waiting for some checks, and all this has been insanely expensive. All this time later, I'm on no meds, have no diagnosis, and am still extremely worried for my well being, cause my body is throwing off all kinds of scary alarms, that at times seems to me to be very serious.

That out of the way, I had a few questions on all this. Could this be P.O.T.S.? I brought it up to my last doctor in the private "American Hospital" here in Paris, he'd NEVER heard of it or it's french form, "Syndrome de tachycardie Posturale"... 140 euros well spent :angry: . As I said before, my blood pressure is almost always around 145/85, it is like this when I am feeling very symptomatic too, if not slightly higher. After my last attack, I took my blood pressure directly after and it had crashed to 100/60 for no reason, which brings up the next few questions. Are these "attacks" a common symptom? And if so, how can I reduce the likely hood of having another one? These really have to be the most frightening, horrible, humbling things I ever had happen to me in my life, and every time it happens I just want to call the Ambulance again (so they can tell me I'm fine again :) ) Should I be concerned for my life that I've been ill this long and still not better?

I was also curious about blood pressure and heart rate. Since my BP is high instead of low, wouldn't having salt be a bad thing? How can I bring down my BP when I can't really exercise or do anything other than try to eat well? Any ideas on lowering heart rate? I noticed it's usually around 105 resting when I feel more symptomatic than usual. What can I do to combat this blasted dizziness? It's really fairly intense sometimes and I'm worried about losing consciousness, but I don't know what to do since my BP isn't low :huh: Any ideas for things I should be asking my doctors? As I can't keep affording this forever. Thanks in advance to the replys.

As a closing note I should point out I have been to the cardiologist, had a 24 hour monitor, and more EKG's than I can remember. They all said I'm fine, and that heart and BP is probably stress induced, and I should try to relax. The Neurologist wouldn't even run a single test on me. After the interview he said it didn't sound neurological, gave me the name of a shrink he thought I should see, then wanted me to pay and go. Guys, don't get sick in France. :(

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First off, try to relax as it wont help matters, stress does make POTS worse. I know, easier said than done but if it is POTS it's not life-threatening just life disrupting.

I remember how scared I was for 6mths when I went through an awful time with it when it first became bad but try to relax a little.

You can have high BP with it, that's not unheard of.

You need to try and get them to do a tilt table test which is what they should do to test for POTS.

I'm sure the others can give more info too and maybe even point you in the right direction of a Dr who knows more about POTS. Also look on the Pots place website as there is a list of Dr's there.

Good luck and hope you start feeling better soon.

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My father lives in France and I've spent a lot of time there over the years.

I don't know that folks in the US necessarily have an easy time getting diagnosed and treated either...

But it does sound like you need a proper diagnosis. It was an electrophysiologist who diagnosed me, based on my symptoms. I feel unwell after: standing, prolonged sitting, going to the bathroom, after intense exertion, around my period. My joints are too unstable to stand up for as long as needed for a tilt table test.

At least for me, once I understood the syndrome and my triggers and had dangerous stuff ruled out, I felt a lot calmer. Don't get me wrong-- I HATE feeling like I'm gonna pass out and all the weird sensations I get when my bp gets wacky. But the triggers are consistent.

Could you try compression stockings to see if they help? Besides being hard to put on/take off, they're pretty free of side effects and I feel much better. That would at least bee an interesting empirical experiment. If they help, that tells you something useful. There's a lot of info here on what kind to get, but most agree 30-40 is most effective.

Hope you get some answers.

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Try to find a physician who is willing to work with you regardless of his knowledge of POTS. Your blood pressure seems to fluctuate quite a bit, but that alone would not confirm or refute a diagnosis of the autonomic dysfunction. The fact that your blood pressure is not low may be a good thing because, given your other symptoms, you may respond well to a low dose of a beta blocker. In Europe, POTS may not be a familiar diagnosis, so try to ask doctors whether they are familiar with "neuroasthenia" or "vasovagal syndrome", which are different names used for the same class of disorders of the autonomic nervous system. Try not to worry that something sinister is going on - from what you wrote, it sounds that your routine cardiac workup didn't reveal anything malignant. Good luck!

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