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Pots And Highbp, Anyone??


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Hi

I have been on .4 florinef for 2 months and my pots is better but bp is too high. Dr took me off flornif last week but after posting and getting advice here I called him and we decide to go to .1. So now it is one week later and bp is still high. What do those of you with high bp take for your pots? I might just have to give this more time but I want suggestions if you have any. THANKS

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I don't have high blood pressure, but I think it is important to know what your blood volume is. In the article in this link, Dr. Bell describes a patient whose blood pressure was borderline high while lying down and sky-high while standing, even though his blood volume was only 60% of normal.

One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself.

As an aside, everyone thought he was a fruitcake - a healthy looking man who said he felt poorly and couldn't work. He was denied disability as usual. Yet when we did the test, he was so determined to stand up I was afraid he was going to stroke out and croak. But he was standing with a BP of 210/140 and a pulse of 140 bpm. He is definitely not a wimp.

After the test, we gave him a liter of saline in the office because he didn't look too good and his blood pressure fell to 90/60 after an hour or so. It is important to note that we had measured his volume the day before so we knew he was hypovolemic. Normally you would never give saline to someone with high blood pressure, it just makes it go higher. In the future, orthostatic testing will require being done in an intensive care unit because these numbers are so scary. Now it is ignored, and patients with CFS called fruitcakes!

http://www.pediatricnetwork.org/medical/CF...ry/oi-intro.htm

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i have not been dx yet with pots but i have all the symptoms and daily stats to show the doc when he gets to see me.. going to vandy june 13th and yes i have the high heart rate and the rise in blood pressure.... good luck to you with the right meds...hugs lisa

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My bp is all over the place--these days generally lower rather than on the high side. But I have had episodes of high-ish bp (150/70 was the highest reading I have had in the past couple of years). When my POTS was bad I had bp as high as 180/100--yikes. As lthomas describes, my high bp was/is relieved by increasing salt and fluid--which is certainly counter-intuitive.

Katherine

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My blood pressure has been very unstable over the years and I was put on Verapamil, a calcium channel blocker for about 6 months at one point to bring it down. Then when it was really low, I was put on Florinef and also had the same problem with too high BP. Lots of fluid and lying down help me the most. Martha

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Lina, did your bp drop significantly now that you dropped the florinef? Again, I think your doc put your on a higher than standard dose, so it may work for you at the normal dose (.1mg).

Nina

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Hi,

I am still taking .1 of florinef. I thought about it after I read some posts and called my cardio and said since my hubby would be away for 11 days I was worried about getting too POTSY and not being able to take care of my kids. He agreed. My bp has come down a bit but I am certainly more potsy, tachy etc. Dr says my bp is now paradoxal orthostatic diastolic hypertension. I just started the estrogen patch because they found out I was completely in menopause (42, hyster but kept ovaries). Dr thinks my body may do some wierd things while body readjusts to estrogen. I am frustrated but not as weepy. Man did I need that estrogen!! He will monitor me weekly for awhile.....

Lina

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