calypso

I have been told by my cardiologist and neurologist that ablations do not help those with POTS, only those with inappropriate sinus tachycardia. Basically the ablation gets rid of the tachycardia temporarily or completely but you're left with any other symptoms that you usually get with it. I believe one of Dr. Grubb's studies that is mentioned on the potsplace Web site says the same thing.

Mine came on immediately following pregnancy ... which involved pregnancy-induced hypertension and a small for gestational age baby. I think the hypertension triggered something that caused the POTS. I was 27 when I had my daughter, now 28, and still hoping my POTS goes away!

Thanks so much for all the info -- esp. Briarrose! All the tests you listed are the ones I had done. I'm sure all of these problems with my health are related; if only I could find one great doctor who could tell me how! Maybe a hematologist is my next stop.

I just got my results back from a panel of blood tests I had done to check for blood clotting abnormalities (because I had the beginnings of preeclampsia and gave birth to a baby with intrauterine growth restriction, abnormalities were suspected). I apparently have a "moderately positive" anticardiolipin antibody and an abnormal prothrombin heterozygous mutation. I asked the nurse to interpret in plain English, and she said these were conditions that increase my risk of recurrent pregnancy loss, blood clots, stroke, heart attack, etc. My OB is not available to see me until May, and I'm wondering if POTS is more likely to occur in people with an abnormality like this, or if it's totally coincidental. I am thinking it's got to be related, because I developed POTS the week after I gave birth, and the clotting issues may have set off some sort of response in my body. If anyone has ever heard of anything that connects dysautonomia and clotting problems, please let me know. Amy

These articles may or may not be duplicates of what's on the DINET pots info page, but in case anyone's interested ... http://www.neurology.org/cgi/content/abstract/43/1/132

Danelle, Oh, I totally understand your anxiety. I think the anxiety is often worse than the POTS for me. I don't have many answers for you, but remember this: Even if you feel like you are about to drop dead from your heart racing, you haven't yet. Think about how many times you thought, "This is it." And you still woke up the next day, right? That's the only thing that keeps me going. I have felt like I'm having a heart attack about 50 times in the last few months. Of course, going to the doctor and verifying that I haven't is helpful, but the more I feel like this and continue to live, the more I realize POTS must not be life-threatening. And there are people on this site who have had it for many years like yourself and still keep on ticking. I know most people will probably be critical of me for suggesting this, but you really may need to try an anti-anxiety med (I take a very small dose of clonazepam as needed). Anxiety, over time, is really tough on your heart and your nervous system. I personally believe it is linked to me developing POTS after I had my daughter last year, because I think I have an overcompensatory sympathetic nervous system, and the few days after giving birth left me sleepless and jittery. I must also remind you, though, I am not a doctor; you should really seek counseling or some sort of support for the emotional side of your illness. I also have found meditation and yoga to be very helpful for the acute anxiety, as well as a very healthy diet and forcing myself to get exercise -- even a 10-minute walk outside. Best of luck to you. Sounds like Dr. Grubb is THE doc to see if you have POTS. Keep us posted. Amy

I was just thinking of asking this same question! I wake up every day with small bruises all over my legs, and I don't remember even being bumped. I've always been an easy bruiser, but it seems much worse since the POTS. I am slightly anemic, though, so that probably contributes. Amy

My dad took prednisone for seven years as an anti-rejection treatment for a kidney transplant. Although it was credited with preventing organ rejection, it made him very moody, required him to go on Fosomax (to prevent osteoporosis), and damaged his vessels and tissue to some extent. His doc told him the drug, over time, does these kinds of things. However, if you need it to function, then so be it. And you can never stop the drug suddenly -- you must be weaned off very gradually.

Merrill, You can't really "feel" high blood pressure -- well, unless it's really high, which can be accompanied by headaches and just a general icky feeling. But because I was being monitored closely since having pregnancy-induced hypertension, I was told to take my blood pressure at home a couple times a day. So I have been checking it for the last five months and since I've had POTS, it seems I have more fluctuation, but not much for low readings -- only a few times since being on the beta blocker. I generally have been running in the "prehypertension" range -- 120-140/80-90. But before my pregnancy, I never had blood pressure higher than 115/75 -- that I can remember -- so this range seems very high for me. I guess it just seems odd that so many people with POTS have hypotension, not hypertension. I don't seem to have much drop in BP when I stand, even after a few minutes. But I do realize highs and lows can both happen.

Does anyone know if POTS gets worse when you fly? We are supposed to go on vacation next month and I'm hoping it won't make my shortness of breath worse or something.

Thanks for the input. I have decided to keep breastfeeding and stay off the antidepressants for now, because all the research is really inconclusive. Plus I figure my body is already screwed up; why should I potentially subject my daughter to a drug that might mess with her nervous system as well? It's really hard, too, to know if my hypertension is "essential" hypertension brought on by the pregnancy, or if it's a result of POTS. I don't have too many low readings. I have yet to talk to anyone with POTS whose blood pressure is as consistently high as mine. So if anyone's out there, let me know!

So I finally saw a neurologist today, after waiting for two months for an appointment. And after describing all my bizarre symptoms (tachycardia upon standing, headaches, shortness of breath, brain fog, muscle weakness and twitches, chest pain), he is most certain that's what I have. He really doesn't want to do a tilt test, though, because he claims that even though they often duplicate the symptoms his patients describe, they are often unnecessary and a waste of time. He is doing an EMG on my muscles next month to make sure I don't have a muscle problem on top of this, but he says his other patients who have it are all very similar to me -- just had a baby, symptoms came on over the course of a few days, same age, female, etc. He is suggesting the usual -- salt and water increase, low-dose beta blocker, and an SSRI (antidepressant). Does anyone have any recommendations? My psychiatrist wants me to try Effexor; I am leaning more toward Luvox. I am breastfeeding and supposedly Luvox is better studied long-term than Effexor. Tried Zoloft already and although it worked pre-pregnancy, didn't work since I've had POTS. So where do I go from here? I am trying to find out about clinical trials and such. My neuro also mentioned that POTS develops because of some sort of antibody issue ... I can't remember the specifics. Does anyone know what he might have been talking about? I am happy that I don't have anything super serious, but obviously I am nervous about my uncertain prognosis and the fact that there's no cure. I also am worried about my blood pressure being so up and down ... how long before there's damage to my arteries? That's what scares me the most.

Oh, I'm so glad others are going through similar things ... well, not that you guys are suffering, but that we all can support each other. So I presume that it's also common for others to wake up in the morning with POTS at its worst? Getting out of bed -- from lying down to sitting up to standing -- takes me at least 15 minutes if I want to not feel like I'm dying. I even started sleeping more upright because I had such a hard time going from flat to sitting -- my heart rate would go up to 130 just from sitting up. Any other tips on sleeping and such? And do you guys also feel totally stiff in the morning, like you've been sleeping for weeks?

I am taking 25 mg metoprolol twice daily. It made me tired beyond belief for the first month but now I am not tired much at all. It seems odd to me that I don't get tired with this illness like many of you do, although that's at least one thing I don't complain of! I am also trying to get some info as to whether it's safe to increase salt in my diet because of the high blood pressure. I have never been a salter -- I don't eat canned or packaged foods much. I'm going to a neurologist on Tuesday and am hoping to get these kinds of questions answered. Thanks for everyone who's chimed in! A.

I am from Youngstown, Ohio, but now live in Wisconsin. However, maybe the reason so many are from Ohio is because Dr. Grubb is in Ohio and patients have found him -- and therefore the right diagnosis of dysautonomia. Weird.

I just found this board and am so grateful. I've been working on getting a diagnosis for the last four months. I had my first baby then and seemed to develop POTS within a week of leaving the hospital. Here are my questions: 1) Can you have high blood pressure with POTS? I had low blood pressure my whole life, then suddenly got pregnancy-induced hypertension 34 weeks into my pregnancy. Since giving birth my blood pressure is generally moderately high (145/95) and sometimes mildly high (125/75). I suspect that maybe the sudden blood pressure changes caused some sort of dysautonomia, but that's my personal theory. 2) Is muscle weakness a symptom for any of you -- like weakness in the hands, where you drop things? I know people with chronic fatigue syndrome say they have had this, and I'm wondering if I have something in addition to POTS. 3) Do most of you get headaches? 4) I am constantly short of breath, even when just sitting. The only time I'm not is when I lie down. Is this typical? 5) Do your symptoms subside when you're not standing? Any info you can provide would be great. I have had so many tests -- a full cardiology workup, blood tests, CT scans, etc. -- and am getting nowhere. But it seems that most people with POTS don't have the high blood pressure and shortness of breath components, so maybe my docs are missing something. Amy Age 28 Mt. Horeb, WI