Schorobi

Yes, my BP has been exactly as you describe...usually too high, but sometimes SBP as low as 90. My BP was always low/normal until the POTS started. My supine norepinephrine was 1300, upright 3300. Yes, the clonidine has helped my BP a lot. Let me know how it goes if you try it.

Bren, I have hyper pots. Clonidine works great for me. I don't have any side effects. The patch is much more effective.

For those of you with severe migraines, please get tested for antiphospholipid syndrome, also called Hughes Syndrome after Professor Graham Hughes in London. It was the cause of my debilitating migraines which responded to blood thinners. Many people, however, respond to aspirin as low as 81 mg daily, so you might try that while waiting to get tested (simple blood tests).

Issie, since the clonidine patch is so much better in terms of giving you an even drug level, you could try pretreating the skin with a high potency topical steroid, let it dry, and then place the patch. There was a brief study, this approach worked well for most if not all pts.

Hi Issie, I think we are similar in that we both have very high norepi levels and high bp. I use a clonidine patch 0.3 plus 0.1 and also take 0.1 mg tabs up to twice a day when my bp goes up despite the patch, which is often. This of course is a high dose and I started low and gradually increased it. I don't have any side effects, if anything it has helped me...i assume because of the high catecholamine levels. if you are taking the pills, consider trying the patch. Keep me posted, I am interested!

I had this test at Mayo MN. Similar to as described. I also had low plasma volume, rbc volume and total blood volume.

Mayo, MN

I agree with you about seeing if you can repeat the TTT now that your tachycardia is much more prominent. It's hard to get the right treatment if you don't have the right diagnosis

I have been taking 0.2 mg daily since October. Still works great for me in fact I am trying to cut my dose to see of I can get by with less

Also Rama, my upright norepi is very elevated at 3300 and losartan quickly made me worse.

Rama: Angiotensin receptor antgonists and ace inhibitors are similar in that they both inhibit the renin-angiotensin-aldosterone system as their primary mechanism of action.

I was doing well except elevated BP on dr Levine's protocol, high salt, florinef and clonidine. I have elevated renin and aldosterone (which is an appropriate response to hypovolemia, but opposite of some POTS pts). Losartan through me into a full blown pots attack within 3 days at a dose of 25 mg daily, which actually makes sense since it is an inhibitor of the renin-angiotensin-aldosterone system which was appropriately revved up in my case since I have significant hypovolemia. I was at Mayo this week and they were not at all surprised it made me worse. It is similar to ace inhibitors which are on the list of drugs to avoid with POTS, but of course there are so many subtypes we all respond differently so I hope it will continue to help you. Just wanted to caution others that this drug is not going to help everyone!

Florinef made me feel stronger within 24 hrs and took away the pre syncopal episodes and significantly reduced my postural tachycardia. At the initial dose of 0.1 mg daily I did however still have some episodes of tachycardia, but when I increased the dose to 0.2 mg daily, my tachycardia completely resolved. I have a significantly hypovolemic form of POTS which is why I think florinef helps me so much.

For me, the terrible shaking "surges" went away with florinef and high sodium diet/salt tabs. I also use clonidine (patch). I am also on month 5 of Dr. Levine's protocol. This combination has helped me greatly.

I have hypovolemia and hyperPOTS. I take florinef and high Na diet because I can't function without it. It helps me tremendously.