I officially have POTS ... so now what?

[calypso]

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.

[denabob]

As far as I've been told POTS wont "hurt"(for lack of a better word) the rest of our body. It wont wear out the heart even ( or so I've been told) I dont think anyone really knows for sure what causes this and there is a wide assortment of treatments. While breastfeeding you should be careful of anything you try!!

I wish you the best of luck!!

Deanna

[MightyMouse]

Okay, first off, I suppose it's a mixed sense of "at least you know what you're dealing with" and "sorry you have POTS too."

Second, your doctor is not completely correct in saying that POTS occurs because of an antibody issue. That can be a cause but research has not show that it is always the case. It may be due to a genetic issue, to damage to the system from an infection, from chemical exposure, yada yada yada. Currently, knowing the eitology of your particular form may not help lead you to effective treatments. The only plus is that if you had a sudden viral onset, you may be more likely to recover eventually.

RE: Clinical trials. Typically, you may not get any direct benefit from participating. In some cases you might. Just be well informed first. The places I know of who are doing research at present are at Vanderbilt and NIH.

As for what to do NOW. Well, first, I'd suggest reading the main DINET site's section on "What helps." http://www.dinet.org/what_helps.htm

you might also want to read through "what to avoid."

And, also, you might want to download the pdf book from NDRF too.

http://www.ndrf.org/NDRFHandbook.htm

Nina

[Guest tearose]

Hi calypso, welcome. Congratulations on your new baby. The best way to understand POTS is to read, ask questions and be pro-active. There are many ways people get pots, and sometimes that is all it is, and sometimes it is a stepping stone on a path with more challenges. Read whatever you can. Learn everything you can. Ask lots more questions. Take time to make decisions. I take no medications since I have a sensitive metabolic system and other health challenges that make medication too dangerous. Well, that's all I can think of for now, ...Take care, tearose

[Merrill]

Hi Calypso -- Congrats on your new baby!!!

I have a couple thoughts after reading your post and thinking about your questions: I agree w/Deanna re: being careful of trying different meds while breastfeeding. I know low dose beta blockers are considered safe during 2nd and 3rd trimester, so they might be OK. As for the antidepressents... I'd for sure check with your OB/gyn; there are probably some that are OK and some that are not. Did you take anything while you were pregnant? Can you get along without them?

ask your OB to confim that beta blockers are also OK! Salt and fluids and compression hose (which your doc didn't recommend) are all obviously safe and will help you a lot.

It's true that about 10% of people with POTS develop it after delivery of baby. The theory as I understand it is that the presence of a "foreign body" (aka baby) provokes an autoimmune reaction... people develop an antibody which attacks the nervous system. This can happen with delivery and also with any kind of major surgery. I don't know if this explains it very well--you might ask your doctor to try again if you're curious.

Take care!

merrill

[calypso]

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!

[Merrill]

Calypso--I'm curious how you know your blood pressure is high. (Actually, this is a question I've wanted to ask many people on this site...) Is it the tachycardia, the fast heart rate, that you're talking about? (Because you can have that without high blood pressure.) And it's true--on this board, anyway, I've heard more people describe low bp or bp drops that lead to fainting. I guess I just don't know what high bp feels like.

Thanks,

m

[MightyMouse]

I run hot and cold with bp, but have had several long cycles of bp's above 130/90 or so. Have gone much higher (160/100) and much lower (30/--)

Nina

[briarrose]

I didn't know that I actually had high readings or blood pressure swings until they did my tilt table, I was amazed.

During the tilt my low was 107/79 and my high was 152/63. I have my print out from the tilt and every two minutes my pressure was something completely different. That was over a year ago and I had never dropped below 100 at that time. About 6 months ago the severe hypotension started and I have been documented at 60/40 during an exacerbation of POTS.

[calypso]

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.

[MightyMouse]

POTS is best conceptualized as poor blood pressure regulation, not just hypotension. Many of us have broad swings in pressure, or low pulse pressures (where the diasolic and systolic pressure are close to each other, such as 100/90).

Nina