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.

I feel cold all the time, have significant hypovolemia (on florinef and 10-12 gm Na diet/salt tabs), hyper with highest norepinephrine level 1770 (sitting, never had standing)

I know that many of you have been to Mayo, Vanderbilt, etc. I am going to Mayo in 2 weeks, but am actually doing quite well on dr Levine's protocol (month 4) and on florinef, high salt diet and clonidine. Of course, evaluation at any of these places is best done off all meds. Did all of you go off all meds before going and if so how did it go and what advice do you have? Thanks

I have pots and an autoimmune clotting disorder. I take warfarin (coumadin) and plavix and took lovenox for 1-2 months before switching to warfarin. I also peridically take lovenox if my INR is low.. I have had no problems with any of this affecting my pots. Make sure you are getting enough salt and fluid intake.

Ashelton80: I HATE those shaky episodes!! I actually have not had them anymore since starting the florinef. How much sodium are you taking? If you are up to 10 gm and still having those spells, consider trying florinef. I noted an improvement within 24 hrs, so you could do a 1-2 week trial and see if it helps you.

That is actually the one good thing about POTS to me...I have always exercised, but never as hard as I do now and I never make excuses now, including on vacation, bad days, etc. There is nothing like knowing the dreaded POTS symptoms could hit you if you miss a workout to keep you motivated! I have had high Glcs in the 200's during "autonomic storms" prior to getting on the right treatment. A few weeks ago when getting electrolytes on florinef my glc came back 46 but I felt fine. I have had very elevated norepinephrine levels (1770 sitting) and I think the glc fluctuations are related, but thankfully I don't have any symptoms from it. have you had low Glcs on testing or just hypoglycemic symptoms? I hope you try the salt tabs...at least that makes the sodium intake much easier!

Ashelton80: Yes I am still doing dr Levine's protocol...I am on month 4...once you finish month 3 if you are doing well they will give you month 4-6 which includes intervals. I feel normal most of the time!!! This is also my second time doing the protocol as above (because when I went off the high Na I was no longer able to do the upright exercise so just started from the beginning.). I thought since I had been thru the protocol not long before I could move thru it more quickly and skipped ahead but I was wrong...just set myself back so then I followed it to the letter and did great. I did not feel well enough to drive consistently until the end of the second month and then got better and better every week in month three and for the last few weeks have felt normal most of the time. Dr Levine is a genius in my book. I will always stay on his protocol.

Ashelton80: I also avoided salt tabs until 2-3 months ago due to Dr Levine's recommendation in the protocol info. But I went ahead and tried them when I read other specialists do recommend them, eg Mayo and i believe Dr Grubb. I have no problems with them, rather they have made my life much easier diet-wise because I know I need a very high Na diet and for me at least it was hard to consistently get that much in my diet. I take 7 tabs daily in addn to heavily salting all of my food. Make sure to drink plenty of water with the NaCl tabs if you try them. I check my weight every am and increase my Na if it drops by more than 2# but that hasn't happened to me recently. sounds like a good idea to try increasing your Na before trying florinef. hopefully the Na only will work for you!

Ashelton80: florinef clearly helps me...I could tell a difference within 24 hrs, but it wasn't until I increased my Na with NaCl tabs that I really did better. I was taking 0.2 mg daily. Recently I was able to gradually cut it down to 0.15 mg daily, but got worse when I tried to cut back more. I bet you would have a good response too since you also seem to have a significant component of hypovolemia. Let me know if you try it!

The same thing happened to me before I was diagnosed. My weight went from my usual 103 (5-5") to 97 in 2 days. I was diagnosed with POTS. Got on dr Levine's protocol without meds and gained back the weight over the next three months. Then when I was doing well, a cardiologist who does not know much about POTS told me I didnt have it (since many patients no longer meet the diagnostic criteria after going thru dr levines protocol). So I went off the vey high salt diet I was on and in a few days my weight went back down to 96-97 pounds. This weight loss was clearly volume. My clothes fit the same. Eventually I figured out he was wrong, got back on very high salt diet and florinef and quickly gained back the weight (after being at 97 for 2 months and feeling terrible). In the last two months now that I know what is going on, I have not had any flares. If you have an illness, your body will need more salt and water.

Sue, it sounds like you may have had an "autonomic storm"