20yrs old/Postural Orthostatic Tachycardia "POTS" or "pass-out syndrome" - Heart Disorders Message Board

charleighbug · 09-29-2003, 02:37 PM

I AM A 20YR OLD FEMALE WHO HAS RECENTLY BEEN DIAGNOSED WITH POTS.

I ALSO KNOW THAT I HAVE HAD TACHYCARDIA SINCE I WAS ABOUT 15 OR SO.

MY CARDIOLOGIST WASNT VERY CLEAR WITH ME ABOUT WHAT ALL IS TO BE EXPECTED WITH THIS DISORDER OR WHAT IT IS CAUSED BY. I ONLY KNOW THE SYMPTOMS.

I HAVE AN ELEVATED HEART RATE AT MOST TIMES EVEN IN REST, UNLIKE OTHER POTS PATIENTS WHO HAVE IT WHILE STANDING. IT HAS BEEN AS HIGH AS 198.

MY DOCTOR HAS PUT ME ON TOPROL (A BETA BLOCKER).
ARE BETA BLOCKERS BAD?

DOES ANY ONE ELSE HAVE THIS CONDITION THAT COULD GIVE ME A LITTLE MORE TO GO ON.

HOW SERIOUS IS THIS???

gillian30 · 09-29-2003, 02:54 PM

Hi! I'm so glad to see someone else with this disorder, finally! I'm a 30 year old female and have been sick for over a year. I was finally diagnosed with POTS in April, after noticing for months that I have severe tachycardia. There's a web site I used to look at called POTS place, I think, which offers some information. There are 2 kinds of drugs recommended for POTS: a beta blocker, and florinef, which is a mild steroid. The florinef will raise your blood pressure slightly so that you will be less prone to passing out. I have tried the beta blocker Inderal, but went off it after a few weeks, because it was making me dizzy. I have florinef but have yet to try it, right now I'm fighting this on my own without the meds, though I will soon try another low dose beta blocker. If you are having fainting or pre-fainting spells, you really should request florinef.

To answer your question about the seriousness of POTS, I can tell you what I was told, which is that this is not a structural abnormality of the heart at all, it is simply a very fast heart rate and blood pressure problem, and boils down to a problem in the autonomic nervous system. It sometimes is a pre-cursor to bigger illnesses, but rarely. Sometimes, POTS disapears on its own, and that's what we all hope for! Mine hasn't, and scares the hell out of me at times, but it is something you can live with. I was put at ease when I had a few more in-depth heart tests, to rule out other more serious conditions. You may want to request an EKG and echocardiogram, that will rule out the possibility of a structural abnormality and put your mind at ease. Let me know how your beta blocker works out for you, I'm going back on one eventually but haven't decided which one I want to request. Good luck!

charleighbug · 09-30-2003, 09:14 AM

THANKS GILLIAN30!
I have had EKG's already. They seem to come back pretty normal though. I show slight left ventrical enlargement. Thats not to serious. I have stopped taking my Beta-Blocker. I felt like it had droped my heart rate too low. (like in the 60 to 70 range)
I've not passed out in about 3 months. All of my other symptoms are still hard at work though. I still get dizzy, my eyes will still black over, I sweat like a grown man, and slight activities will make my heart race. One thing I have found to help me is to avoid heat as much as possible. If I get overheated is when I feel the worst. I also will take my Beta-Blocker if I know I'm about to do something that will raise my heart rate too much. Do you know anything about the risks of me trying to have a child? My cardio. told me that I had to come in and talk to him before my husband and I ever tried to concieve. I know that the stress of childbearing sometimes has been linked to POTS or has caused it in weomen that never had it before. So I wonder what the effects could be on someone who already has it. I want children but I also want to be around to raise them.

gillian30 · 09-30-2003, 12:35 PM

As far as I know, there's no danger at all in having a child, but it's interesting your doctor told you to let him know before you start trying. No one ever said anything like to me, now I'm wondering if I should question my doc about it. POTS can come on after the childbirth experience, and maybe that means it can also worsen after birth for people who already have it. But everything I've read has indicated POTS is not a dangerous condition, as long as there's nothing else going on with your heart like a structural abnormality. An echocardiogram is a good way to check that out. As far as the beta blocker lowering your heart rate, my beta blocker Inderal had also lowered mine into the high 50s, low 60s, which my doctor said was totally normal. The reason it made me uncomfortable was how much it dropped my BP, all the way down to 90/60 sometimes, causing more dizziness. Oh, and if you also have a condition called neurally mediated hypotension, as I do, you're supposed to feel better than ever during pregnancy, because of increased blood flow. So that's at least one good thing!

dizzy572 · 10-18-2003, 06:05 PM

I am 50 and just had an ekg and was told I had a slight thickening of the left ventricle...high blood pressure and of course something I have had since my teens a fast heartbeat........never knew why. Over the years doctors made comments about the beat but never said no more. I am now on a low dose beta blocker...atenolol....and the beat is slower and so is the BP. I can live with that.