Hypertensive POTS

[calypso]

I am wondering if any of the few of you who have hypertension with POTS have seen either Dr. Grubb or any of the specialists at a major clinic (i.e., Mayo, Vanderbilt). I am wondering whether they screened for any other diseases before deciding it was for sure POTS.

My neurologist is a pretty good guy, but he thinks he can handle my case and that I don't need to be seen by one of these specialists. But I feel that hypertensive POTS seems VERY rare (POTS in and of itself is fairly rare, and I only recall a few on this Web site who also have high blood pressure), and I want to be absolutely sure that I don't have something else going on.

So if you have high blood pressure and POTS, I would like to know if there were any other illnesses that could cause these symptoms -- aside from adrenal tumors.

[morgan617]

i have a rotten neurocardiogenic system and malgnant hypertension. i do not have syncope. so no pots. i have actually talked to dr. david robertson, who is doing studies on baroreflex failure. you might check out that web site at www.mc.vanderbilt.edu/gcrc/adc/baroreflex.html you are right it is pretty rare. of 500 patients with autonomic dysfunction they only found 11 with this disorder. i have been trying to get in on a study there but have had a snafu, ie they lost all the records my doctor sent. i will not ask him to pick thru my chart again. it's 6 inches thick! so will probably not make it there, but check it out and see if it sounds like you. it sounds exactly like me. good luck! morgan

[MomtoGiuliana]

Calypso:

I was diagnosed with POTS and had hypertension (160/90 was my highest reading) with my POTS. I've never been hypertensive prior to that that I know of. My specialist didn't tell me this was rare. A small dose of beta blocker and increasing fluids and oddly enough it seems, salt, brought my blood pressure back to normal quickly. My blood pressure now is regularly around 110/70, or lower. I take 5 mg of pindolol a day still, as well as 20 mg of prozac. I would sometimes also have drops in blood pressure, by the way, occuring on standing (prior to diagnosis and treatment). But, usually I was hypertensive.

Hopefully it is a short-term problem for you too.

Regarding the question about being evaluated for other problems, I was evaluated for everything under the sun practically--from MS to rare tumors. It all came back negative. The only thing positive was my tilt table test.

Regarding your comment that POTS is rare--I think the problem may be that diagnosis is rare. My specialist claims it is very common, just most people with POTS are not diagnosed, and their symptoms are generally mild enough that they cope without continuing to pursue diagnosis. I agree it seems that most people with POTS seem to have trouble generally with LOW blood pressure, not high. My younger sister was also diagnosed with POTS and was experiencing unusually high blood pressure like I did.

Morgan--I am a little confused by your statement above "i do not have syncope. so no pots." I have always been under the understanding that POTS is diagnosed based not on a drop in blood pressure, but an exaggerated increase in heart rate upon standing.

I will be interested to see what other responses you get to this question about hypertension, Calypso.

[RunnerGirl]

I, too, have experienced elevated BP with my tachycardia. This led to my being worked up for pheochromocytoma (rare adrenal gland tumor that almost always causes episodes of hypertension). All my tests for pheo have come back negative, as have numerous other tests for an "organic" cause of my tachy, epidoses of anxiety and elevated BP, etc.

My BP elevations are never sustained, so I've not been diagnosed with hypertension, nor have I been told I need to take medication to treat it. (A 24-hour ambulatory BP monitor revealed I am essentially normotensive.) I also don't have an official diagnosis of POTS, but I have been told by my EP that I have a hypersensitive autonomic nervous system - something short of full-blown POTS or Innapropriate Sinus Tachycardia (IST). I have bouts of sinus tach, frequent ectopic beats, elevated exercise HR, etc. - but other times I'm completely normal.

There are some variants of autonomic disturbances that are hyper beta adrenergic in nature - that is, we over respond to normal levels of adrenaline. I think this would cause both elevated HR and BP, given the effect of adrenaline on those variables. My docs have told me a low dose beta blocker will smooth out this hair-trigger response with minimal side effects, but so far I've been managing without any meds.

Looking forward to other posts on this topic. I wonder if it's not as rare as we think.

Best,

RunnerGirl

[calypso]

MomtoGiuliana,

How long did your BP run high for? Did it go down immediately with the beta blocker or did it take awhile?

I started 25 mg of metoprolol 2x/day five months ago and even with that, my BP still runs above the normal range -- 120-135/80-88. I did have pregnancy-induced hypertension and the POTS came four days later, but I did have a period during that first month where my BP was normal. It was like my BP normalized from the pregnancy, then started getting screwed up again. Before I was pregnant, I was a typical POTS person -- my typical BP was 85-105/50-65.

And how long would you say your POTS was "full-blown" before it started to improve even a little?

I am just trying to piece this all together without trying to make my primary care provider run every single test. He thinks I am just having "stress," although today he agreed to run a 24-hour urine for pheochromocytoma and another thyroid function test. The fact that I have this constant muscle weakness and swelling all over my body, plus shortness of breath every minute of the day, makes me think it's not POTS and that something is being missed.

I suffered from panic attacks when I was 18 and went to college, and of course once that's in your chart, it's an easy diagnosis for anything. But interestingly, through this whole POTS experience, I've had just 2 panic attacks. And it's probably because I had to stop my anxiety meds prior to pregnancy and can't resume until I stop breastfeeding.

Amy

[goldicedance]

POTs with hypertension is rare, difficult to diagnose, but quite possible. I am frequently hypertensive when lying down and when I stand my blood pressure falls along with the blunted heart rate increase due to the ablation.

Like my friend, Runnergirl, I was worked up for pheocry. I was also worked up for thyroid problems, catcheolmines (spelling), more 24-hour urine analyses etc. It was my cardiologist who diagnosed me with POTS in 1996 who really urged me to see Dr. Low at the Mayo Clinic in 1998 because of continuing problems. The Mayo has a state-of-the-art autonomic nervous system lab. There Dr. Low did sweat test, Qsart, etc. I thought the trip was well worth it.

Good luck. Follow the yellow brick road and hopefully you will find the good witch who can wave her magic wand and make you feel better.

[MightyMouse]

My BP is all over the map. I think my highest was 160 something/100... I'm routinely at 140/90...and just as often so low as to have no measureable diastole. They've told me it's "labile hypertension" for whatever that's worth.

Nina

[Deb]

I've complained about this before, but I am getting so sick of having new symptoms every two to three weeks.

I was diagnosed just last week with hypertension. I don't understand it because I had hypotension that got even worse when I stood up. It's in my charts that I have orthostatic hypotension and othostatic intolerance. My heart rate would go wwaaaayyyyy up and then my BP would drop down to nothing. It was normal when I was lying down.

I don't know what other illnesses, if any, could cause the POTS symptoms. I had a vast array of tests including a dozen or more EKGs, an EMG, the 24 hour urine collection, the 24 hour heart monitor, I've lost track of the MRIs, maybe four. I've also had more CTs then I can remember. They looked for rare tumors, rare brain function, rare vessel conditions, rare antibodies, and then all the more common things like epilepsy, hypoglycemia, hypothyroidism, liver and kidney disease, and things I no longer remember. They all came back as normal except for the electrolytes levels. Since I started taking extra salt, those have been normal for the past six months. I flunked the tilt table test magnificently!

My PCP told me that because hypertension runs in my family, it's not uncommon to believe that I have it with the POTS. I did not respond well to the beta-blocker I was put on, so I just started an ACE inhibitor yesterday. I feel even worse.

I still have the orthostatic intolerance that isn't responding any longer to the midodrine, so I feel like I'm falling apart. I barely drag myself to work each day, and then collapse each evening.

I would also like to hear from others who have been dealing with hypertension and what medications work for them. I feel like a guinea pig in a laboratory.

[calypso]

Hmm ... maybe hypertension with POTS is not so uncommon after all.

Deb, may I ask your age? If you are over 35 I guess it would not be as inconceivable that you may truly have some hypertension. Or maybe you developed it because of the years of abuse POTS has put on your blood vessels -- I have to think that over time we are all going to get hypertension because of the stress POTS has on the cardiovascular system.

But I remember you saying you are quite thin, and that's odd. I am also really thin and am only 28, so I guess I am trying to find a reason for the hypertension rather than just accept that I may have it for life. I think many doctors don't look for causes of hypertension as much as they should and just treat the problem. I am sure my hypertension is related to the POTS, but I just don't know how, and I still have hope that if the POTS starts to get better, so will the blood pressure.

[Deb]

Amy,

I just turned 47, and I am thin. My mother has the same response about B/P as you, why would I have High B/P when I'm thin and eat healthy, and the only risk factor I have is a parental history of it? I am one of eleven, and only one of my siblings has B/P problems. He's younger than me, and has had it for several years. But his is very mild, like 130/80. (I don't remember exactly.) On the other hand, mine has been upper 140s to upper 90s for weeks, and now is regularly more like 160/100. It really scares me.

I really think the B/P is related to POTS, too. I can remember having POTS symptoms (now that I know what they are) back over two years ago. During that time I had a period of high B/P but it was determined to be caused by stress due to a reorganization at work, and us selling our house and moving to another State. A year and a half after that, I had elevated B/P again, but I thought it was due to starting a new job and having a boss that was a real pill. That was in June of last year. Then in November I started fainting, and the ER cardiologists switched around my B/P medicine (they had so many theories, it was ridiculous). That's when I tried the beta-blocker. It made my POTS symptoms so bad, I couldn't function at all. I had to go on short-term disability. Then in December, after finally getting to see a Neurologist (I'd been to the ER five times by then), they discovered the high heart rate and LOW B/P when I stand. So, then the midodrine. I was diagnosed with primary autonomic shut down until I had the testing done after Christmas that indicated POTS. Now here I am again, six months later and diagnosed with HIGH B/P.

We never seem to win, do we? I still really do think that it is somehow related. I wish I knew what to do about it, who to see, etc. I am so tired (literally and figuratively) of not feeling well!!!!!!!!

Sorry I'm venting so much. I hope that this will pass, too, for both of us. I just don't know if my POTS will EVER get better!!!!!!!!!!!!!!

[MomtoGiuliana]

To answer your questions, Calypso:

"How long did your BP run high for? Did it go down immediately with the beta blocker or did it take awhile?"

I also had pregnancy induced hypertension that started in the last four days of my pregnancy. It came on very suddenly, since at that point I was seeing my ob/gyn about twice a week. Suddenly it was 170/80 and all along had usually been no higher than 120/80. The hypertension continued for about 8 weeks post partum. My ob/gyn was unconcerned and said it would go away. It did go away--for about a month. Then it came back again. Also I had especially bad POTS symptoms from the night my daughter was born through that 8 week period. Then I seemed to get much better for a month, and then really went down hill, to the point that I was finally hospitalized for diagnosis.

It took about a week to maybe two weeks of taking the beta blocker for my blood pressure to go back to a normal level. I was taking 5 mg 2x a day of pindolol.

My blood pressure otherwise has always run a little on the low side, like you also describe--not quite as low as yours, but around 100-110/65-70.

I don't know anything about beta blockers, but I wonder if you are on the best one for your specific condition.

"And how long would you say your POTS was "full-blown" before it started to improve even a little?"

About 2 months following diagnosis and starting treatment on beta blocker and ssri.

"I have to think that over time we are all going to get hypertension because of the stress POTS has on the cardiovascular system."

Calypso, I don't think it is the stress of POTS that causes hypertension, from what I have read. I think rather Runnergirl was on the mark when she said: "There are some variants of autonomic disturbances that are hyper beta adrenergic in nature - that is, we over respond to normal levels of adrenaline. I think this would cause both elevated HR and BP, given the effect of adrenaline on those variables." This is also how my specialist explained it to me--he said my cardiovascular system became highly sensitive to even small amounts of adrenaline, and that brings about the pounding heart and high blood pressure. ALTHOUGH, I agree with you that POTS is stressful to the mind and body.

I hope this helps. Hope you start feeling better and that blood pressure goes down to normal. Once you start feeling like it, which may be awhile, exercise will help bring it down too.

[calypso]

Thanks for all of your feedback! I swear I learn more here than after seeing five different specialists.

My BP stabilized for a month after the delivery too, then I had a few labile hypertension episodes of 140/100. I am just afraid that if I take any more BP medicine, the BP will start to bottom out when I stand up.

I bet that when I stop breastfeeding I should notice some changes for the better with my body -- I think a lot of my energy is going to making milk rather than to healing myself. I am exercising a little (four days a week of 40-minute speedwalks with my daughter strapped to me in her carrier), and it's difficult, but I do it faithfully. I would like to jog but every time I try, I get chest pain -- which my doctor assures me is "not my heart" (no, it's just a total coincidence? No way).

You guys are just great ... especially for newbies like me who just don't know what to expect.

Amy

[MomtoGiuliana]

Calypso, I think you're right about being cautious with the meds, but if you still have high blood pressure with the beta blocker you are on at the dose you are on, perhaps you need a different beta blocker and you could explore that with your doctor.

If you can speed walk for 40 minutes 4X a week you are doing great! I wasn't up for that until my daughter was about 6 months old, due to POTS. Exercise is supposed to help regulate/reset your autonomic system, so keep it up!

Weaning will help, but also as your daughter starts eating solid foods, she won't be demanding as much milk and that will also help probably. The first 4 to 6 months of breastfeeding are the most intense of course. That said, I had to give up breastfeeding, or chose to, at about 4 months, b/c the pediatrician didn't like me to be breastfeeding while taking the SSRI and the beta blocker. My cardiologist and ob/gyn said it was safe, but he said no, and I decided to do what the pediatrician recommended.

I STILL get chest pain sometimes during exertion. For a long time, climbing stairs especially, did that to me. It's not as bad any more--but I agree, it is not coincidence, it is part of POTS and I am sure must have something to do with inappropriate pooling of blood.

Take care, Katherine