HyperPOTS8

Dr Sandroni, neuro MD at Mayo, does not recommend mestinon for hyperPOTS.

So how are you doing? And how about now compared to 4 years ago?

Hi Jenni, adrenergic overactivity and hyperadrenergic are synonymous. Did you have catecholamine (norepi, epi, dopamine) levels checked? I have very elevated norepinephrine levels as well as severe hypovolemia.

For me, it helped a lot, but did not cure me.

Go to one of the main dysautonomia centers if you can ( Mayo, Vanderbilt, etc) rather than taking a chance on getting one of the many EP docs who really don't know much about POTS/dysautonomia.

I agree with Libby! It seems you have very little to lose by trying meds. I could tell a significant improvement from Florinef in 24 hrs with no side effects for example.

1/ not sure why it would help to have your aldosterone level checked. Mine was actually high due to severe hypovolemia (determined by blood volume analysis) which is probably why Florinef helps me so much. Others have low aldosterone, however. 2/ you won't become dependent on it for life! 3/ I started at 0.1 mg daily but never hurts to start low and go slow 4/ absolutely, you should ge your potassium checked regularly. More often in the beginning, say q1-2 wks, then once you determine our long term dosing say q 3 months. You should start KCl with the Florinef or you will end up getting total body KCl depletion (according to Dr. Peter Rowe at Hopkins). You should also check periodic magnesium (but not as ofen as K) 5/ Florinef does have corticosteroid activity, but the amount is minimal at doses of Florinef <0.4 mg daily. I could tell a significant improvement from Florinef in 24 hrs. I don't have any side effects.

Fatigue is a common side effect of beta blockers for all types of patients.

Did you try the Florinef or beta blocker Dr B advised?

Variations you describe--20 pts systolic and diastolic are wnl, usually a bit less on the diastolic. Mine ranges from 70/50 to 190/120, that's not normal.

Puppylove, it depends. In my case, I have hyperPOTS and severe hypovolemia. If my volume status is low, it makes my catecholamine levels higher and my BP higher. I adjust the number of salt tablets I take daily based on my am weight (and I also take Florinef). I am sure, however, that there are also people with hyperPOTS who are not hypovolemic, in which case salt loading may make their HTN worse.

Clair, It is common with dysautonomia for symptoms to fluctuate both from day to day and within the same day!

Amelia, propranolol has a very short half life, about 4 hrs. That is most likely why it is only helping you for short periods. There is an extended release form or you could take it more frequently. Nadolol has a much longer half life and only has to be taken once a day. Keep in mind that for each person, however, one beta blocker may be more or less effective than another. The only way to know which is best for you is trial and error unfortunately.

Have you tried a recumbent bike or rower. For most people with POTS that is the best way to start exercising.

Jangle, propranolol is the classic beta blocker used for stage fright, panic, etc because it is centrally acting and has a short half life so has a rapid onset. Since it made you more SOB it may cause bronchospasm in your case and all beta blockers may do that. Since benzos haven't worked and you feel it is catecholamine-mediated you could consider discussing oral clonidine as needed with your MD.

Jangle, Yes I have all the hyperadrenergic sxs (but not bronchospasm) and very high NE levels 900 to 1800 supine and 3300 upright. I have tried labetolol, but clonidine is a much more effective drug for me. Keep in mind that beta blockers can cause bronchospasm.

Jangle, labetolol is a mixed alpha and beta adrenergic receptor blocker. Propranolol is just a beta blocker, ie it will have some BP lowering effect but the HR slowing effect is much stronger. The alpha receptor blocking effect present in labetolol (in addition to the beta blocking effect) causes vasodilatation and will have a much greater BP lowering effect. So labetolol and carvedilol (coreg) are mainly used for hyperadrenergic POTS pts who have hypertension.

I had a glc of 46 on my electrolyte panel (done since I am on Florinef). I felt fine. I have also had glc 200's prior to dx on more than one occasion when feeling very ill from POTS (in the ED or clinic). Catecholamines are "insulin counter regulatory hormones," meaning that they counteract insulin to increase your glucose during times of stress (when the catecholamines are supposed to be released). I believe the hypoglycemia in those of us with hyperPOTS is then due to a release of insulin to counteract the high glucose from the excess catecholamines.

Yes

Thanks Issie, what about the highs?

Issie, sorry to hear you have diastolic dysfunction, but glad that you found out about it. How long have you had high BP's, how high does your BP typically go and for how many hours a day would you say it is elevated? Do you also have periods where your BP is low? I know you said the clonidine helped, but that you had to stop it.

Christy, I wonder whether doxepin could be helping in some ways but it also could be making your son's POTS worse since it is a tricyclic antidepressant which is one of the class of meds to avoid in POTS since it can worsen orthostatic intolerance (see home page, things to avoid). Just something to consider.

I have a posterior pituitary cyst, but was able to find that it is unchanged from a prior study done a few years ago (which did not make note of it!). I had a dedicated pituitary MRI anyways which was recommended on the MRI report. I would ask your MD to have a neurosurgeon review your films and see what they recommend. There are benign things and not benign things that can occur in the pituitary. You want to be sure!

Perhaps this is why I was told by Mayo neuro I have "presumed brainstem dysregulation causing a hyperadrenergic state" and "disorder of the autonomic nervous syndrome" rather than "POTS" even though my TTT is c/w POTS. I know that is also true for another forum member who recently saw one of the Mayo neurologists.

Rama, you say "BP may decrease in excessive vasoconstriction". Actually, excessive vasoconstriction causes an INCREASE in BP.