meds for hyperadrenergic POTS

[dianaD]

Hi everyone,

I have hyperadrenergic POTS and a trial of beta blocker (nadolol) failed miserably. I was taking just 1/8th of a pill and still developed some wheezing, depression and my blood pressure and heart rate dropped TOO much when I was lying down. Even worse, it didn't even touch my symptoms of being flooded with adrenaline, tremulous,etc.

Has anything worked for you? Does anyone know the "plan B" for hyperadrenergic POTS?

Thank you!

Diana

[MightyMouse]

Diana, take a skim through the "help yourself to..." pinned topic at the top of the forum. On the main DINET site, you will see the "what helps" section. Also, consider downloading the NDRF "handbook on dysautonomia", which discusses the different types of ans disorders and potential treatments. It is also in the "help yourself thread."

welcome to the forum Nina

[Sunfish]

hi diana -

i don't think i've said "hello" before (and if i have my memory is failing me), so welcome! there's definitely a lot of great info here - in the spots nina mentioned & throughout the forum.

i have POTS & NCS (amongst other things) but not the hyperadrenergic type, but still wanted to encourage you that there are A LOT of different options treatment wise. it can take a lot of trial & error, patience & perserverence, and what works at one point for you may not work at another, but there ARE options.

hang in there & hope you find something to bring you some relief soon,

:-)melissa

[Ernie]

I take Propranolol

Ernie

[michiganjan]

I have hyperadregenic POTS. I take Sectral (name brand) beta blocker. The beta blockers as a class slow my heart rate and make it more mangaeable. The calcium channel blockers have no effect on my heart rate at all.

I have tried many beta blockers and some work better for me than others. One that worked well for a number of years gave me intorable symptoms when I first started taking it. I could not breathe when walking fast--it was as if my heart and lungs failed to keep up with that level of activity. However that phase did pass. The doctor I had at the time explained that my body needed an adjustment period in order to learn to metabolize the drug and to figure out what to do with it.

I think my initial reaction might have been better if I had taken a tiny tiny dose to begin with. You are already starting with a tiny tiny dose (very wise of you!) so the one you are taking may not be for you. My experience has been that different beta blockers have different side effects and while one might not work, another might. It has been trial and error for me to find one I can tolerate and that does the job.

Michigan Jan

[nantynannie]

Hi Diana,

I am taking Toprol XL which is controlling my heart rate and high bp (when standing) but does nothing for the other symptoms. My doc explained that it is only a beta blocker and that the other symptoms from the adrenaline/catacholamines can come from alpha stimulation. I tried a drug that blocked both and I thought it was going to kill me. The Toprol keeps me from NCS when lying down (I don't understand how this works since it is lowering my bp) so it definately helps but cannot control everything. I think the med I tried for both alpha/beta was Coreg-maybe you could ask your doc if it is safe for you to try.

Ann

[tammyokc]

Hi Diana, I have hyperadrenergic POTS too. I have tried so many beta blockers and nothing worked for me.

The only thing that helps is .5 mg of Ativan twice a day. I hate taking drugs like that, but I am very drug aware and make sure I'm not addicted!!

Good luck!