Gluten can cause a lot of strange symptoms from sensitivity to celiac disease, and it's in everything, even lipstick and things you wouldn't expect.

Thanks,

My POTS is more complicated, Midodrine makes me more dizzy, it raises my BP a tiny bit but my BP is ALWAYS normal, even when I feel crap.

I think because my hands, feet are always cold, I maybe over constricting to compensate for the failed vasoconstriction in the splanchnic area or maybe lowered blood volume. I was thinking of trying florinef but depends.

Not sure why you are considering florinef (or even tried midodinre) IF your BP is normal (even standing). Both of these meds are to increase BP. If you have high HR with your POTS then you need a beta blockers or similar to help control your HR.

Many times your HR increases in compensation for a drop in BP. But you say your BP is fine 'always', so not sure what symptom exactly you are looking to treat. Please advise. POTS/autonomic dysfunction can have various symptoms. It would be more helpful if you told us which symptoms you are having problems with.

Beta blockers are counter effective in my case, when I stand my BP drops for a few seconds and then recovers, my heart is presumably what is keeping the blood pressure normal.

Florinef increases BP, but it increases the blood volume, which means more blood in the total circulation, an increased pressure which will prevent the drop and symptoms.

Light headedness is my main symptom. A BP in the arm doesnt reflect a true BP in the brain, or other vascular beds. Just wish I knew the answers to this.

Beta blockers are only real helpful if you have significant tachy rates. It's doesn't sound like that's much of a problem for you either.

If your BP corrects itself that fast, then does your light-headedness correct that fast too?

Your BP in the arm may not be the same as in the brain, but it is relative to symptoms...if the arm BP is low, then so is the brain and most people are symptomatic when the arm BP drops to a certain level. It doesn't really matter what your BP is (arm or brain). Some people are symptomatic at 95/65. I have had this so many years that I can function with systolics into the 80's and don't get real lightheaded until the low 80's or 70's. It also depends on how fast the drop is. A 30-40 point drop in 1-3 minutes will usually cause symptoms (regardless of BP numbers) faster and more profound then 40 point drop over 15 minutes (even if it goes into the 80's).

Florinef is a corticosteroid and helps to retain volume and salt. Have you tried a simple high salt diet yet?

It sounds like you have significant lightheadedness...more so then your BP dictates (if it corrects itself that quickly). What did your tilt table test show?

Some simple suggestions would be to avoid caffeine (all), increase fluid intake, and increase salt intake. If you still have problems, then try a low dose (no more then .05mg) of florinef.

I'm not sure how much it drops as its so quick to catch it. But when it has recovered sometimes I feel light headed and weird still even though BP is normal.

I've tried more salt and fluids, not a great help plus I pee so often when drinking a lot.

Dear Andy,
I have EDS Vascular/Classical with MCTD (Raynaud's, Sjorgrens, high ANAs). I have peripheral neuropathy that started about 8 months ago. My PC said it is because of the autoimmune problems. He basically said that it is what it is.
I also have tachy and have had it for about 7 years. I am on beta blockers for it (and the subsequent hbp) and as long as I don't carry things, bend down, etc, I am fine (LOL).

It is important to keep pushing the water and salt. Your body will eventually slow down on the bathroom breaks when it gets used to the added water.
Karen

My BP ranges from 110/59-137/85

Are you using an SSRI antidepressant? How about other RX and OTC medications?

These are actually pretty good numbers. What about HR? How does it relate in these episodes (the numbers)?

You say your POTS is complicated...did you have a tilt table? If so, what were the findings?


Have they considered anything else for the light-headedness? How's your blood glucose? Have you had a 3 hr GTT?