HyperPOTS8

I had this done at Mayo and it showed severe hypovolemia. It is a nuclear medicine test. It is not done everywhere. I knew I had hypovolemia because my weight would drop quickly, eg 7 pounds in five days...too fast to be anything but fluid and my clothes fit the same. Also very high salt diet and Florinef helped me a lot.

Her overall BP control is good!

Potluck,

What did your levels come down to and do you have any idea why they came down, eg were you taking a TCA or other medication that can affect the results?

They are using Botox for this now

Zap, I'm glad the pamelor has helped your migraines. Note, however, that the TCA's are on the list of drugs that can worsen orthostatic intolerance (see things to avoid on the dinet home page).

Have you had your serum immunoglobins tested? Also what is you WBC differential when you are not infected? Ie absolute lymph count, absolute neutrophil count, etc?

NM: I have also read articles, etc stating that patients with hyperPOTS should not take salt, but I have documented severe hypovolemia by blood volume analysis at Mayo and take both Florinef and a very high salt diet and they have recommended that in my case. Before being diagnosed, my weight would drop from my baseline of 103-104# to 97# in about 5 days. Now I adjust my salt intake based on my daily weight. For me, it is clear that I have increased sympathetic activation (eg flushing, increased BP, etc) when my blood volume is low. For me, though, that is also clearly not the only thing causing overactivation of my SNS. I think it's also clear that some people with hyperPOTS do not have hypovolemia and do not respond to salt/Florinef. There are clearly many subtypes of POTS. Also, as you can read in Dr Raj's POTS review in the Indian Pacing Journal, it is not clear in some patients whether the primary problem is MCAS or if the catecholamines activate mast cells.

Rama, not according to Dr Sandroni at Mayo.

Rich, I am looking forward to hearing your results

You could consider making an appt with someone like dr Grubb but in the (long) meantime, there is a good chance you will see some evening out of your BP with the clonidine patch, start at 0.1 mg every 5-7 days. Also, if you do have hyperPOTS which seems likely given your sxs, BP and HR lability and the fact that you have EDS, dyazide may be making you worse since many people with POTS have at least some degree of hypovolemia. And hypovolemia can in turn cause an increase in catecholamines. The sweating a lot has definitely been described with hyperadrenergic states...If it is new, associated with fever or weight loss, however, then you should be evaluated for it.

No, Florinef won't affect your cardiac conduction (unless it causes low K or Mg which it can but less likely at the low dose you are on, but would still check if you haven't already). My HR has gone as low as 42 on several occasions that i have just picked up on my BP monitor. If you don't have syncope you are unlikely to need a pacemaker (unless the pauses are frequent/long.)

It sounds as if you likely have hyperPOTS. Have you had supine and upright catecholamines done? How much clonidine do you take and do you use the pill or patch form? The patch should give you more even blood pressure control.

Emma, a pause is just that, a pause between beats of the heart that originate in the SA node, the usual "pacemaker" of the heart. If the pauses are too frequent/ too long (usually greater than two seconds) it can be an indication for a pacemaker, but Ibravadine, beta blockers, and calcium channel blockers like diltiazem can all cause bradycardia and sinus pauses.

The other drug used most commonly for hyperPOTS besides labetolol is clonidine.

Rich, I take clonidine patch and prn oral clonidine which has been very helpful for me ( no side effects). I also have severe hypovolemia documented on blood volume analysis at Mayo and take Florinef and a high salt diet which also have been very helpful. I have also completed dr Levine's exercise protocol and workout 5 hrs/wk.

Have you gotten your catecholamines back?

According to Dr Sandroni at Mayo, AAG does not cause hyperPOTS, it causes orthostatic hypotension.

Rich, I have very high NE levels (1300-->3300) and Sometimes my BP goes up with standing, sometimes it's the same and occasionally it drops significantly. Most of the time it's essentially the same.

Rich, in both the abstract and the section called Crierion fo dx hyperPOTS it says OR. Also in the table listing the clinical features you will see that only 18.5% had orthostatic HTN. I do see in the intro paragraph it does say AND but that is clearly a mistake.

NM: for me when I have those episodes what helps most is to lay down in a hot bath in a dark room (no stimulation). High catecholamines as occur in hyperPOTS cause vasoconstriction and the heat causes vasodilatation. This is very different from those with the much more common partial dysautonomic form of POTS that worsens with heat because they are chronically vasodilated. Oral clonidine or labetolol would be the best agents to use as needed to lower BP when it surges as they both have a short half life and quick onset of action and both block the sympathetic nervous system. For me, clonidine is best (I have both).

If you read Dr Raj's summary article (in my opinion the best overall summary of POTS),, he says 30% of POTS pts have syncope.

Try the Florinef first. It's always best to start one thing at a time. You should also be on a high salt/fluid diet to give a fair trial of the Florinef. If you have hypovolemia, which many pots pts do, this should help you.

Rich, the review says increase in norepinephrine OR increase in BP, not AND

The standing Hr improved from an average of 94 to 82 and the DBP improved from 71 to 74.

Dr. Sandroni at Mayo told me mestinon only helps POTS pts with low not high BP.

Same...Florinef!

Do a search on the forum for "coat hanger pain" and see if that fits with your symptoms