Best Meds For Hyper Pots?

[joyagh]

I'm on Metopropol 75 mg/day and was well controlled until I started h2o aerobics. Now I'm getting adrenaline surges when I'm drifting off to sleep, which wakes me up and recurrs for an hour or so each night. I want to ask my doc about Klonopin and Clonidine, as I wonder if an A/B blocker would be better for me than just the B-blocker.

any suggestions?

anecdote - a week ago my dog was attacked by 2 bear hunting dogs. I had to pull her out with my 3 yo child standing next to me, not knowing if I'd get attacked or if my child would. The dog owner was a complete beligerant **** and refused to give me her info and fled the scene. I had to call 911 and follow her in my car. She kept yelling at me and letting her dogs jump on my car. The cops came are were ****** too. I was knocked out for 3 days after b/c of the adrenaline surges I was getting. I felt totally vulnerable and weak and threatened and attacked. I cannot handle those kind of situations. I believe it's hyper POTS making me have trouble of all sorts, but especially in confrontational situations.

Edited December 10, 2012 by corina

[Kellysavedbygrace]

I'm sorry to hear of your troubles.

Have you been diagnosed as hyper pots? Have you had your Norepinepherine levels checked when upright?

I have hyperadrenergic POTS with Mast Cell Activation Syndrome. I also have Neurally mediated Syncope and severe blood pooling. I'm still trying to find the best treatment protocol but for me Klonopin is really helpful- (especially w oscillations of the heart) a minimum dose in evening before bed. I did not tolerate BBlockers well, nor the SNRI - now I am on high dose Antihistamines (which have been great help) and a birth control pill to stop anemia. I also use Mestenon with good success.

[joyagh]

what do the antihistamines do and what kind do you use? I take benadryl to help me sleep, but nothing otherwise.

RE: Klonopin for oscillations of heart - do you mean palps, adrenaline surges etc? or BP swings?

[chipper]

Clonidine and Klonopin is the best for me, but start clonidine very slowly. Good luck!!

[joyagh]

Clonidine and Klonopin is the best for me, but start clonidine very slowly. Good luck!!

thanks. I'm just so confused at this point about what is wrong with me and how to fix it. I don't have a good specialist and had to change PCP's when we moved. I hate to have to self-diagnose and self-prescribe (with a Doc's cooperation) but my palps are back with a vengeance, my pulse pressure is 60 points (low diastolic) and these adrenaline surges suck. maybe I should stop exercising if I'm Hyper due to adrenal fatigue?

[peregrine]

Clonidine has been helpful to me thus far, as has atenolol (I don't seem to have MCAS unlike some folks, so can tolerate a beta blocker). Clonidine gives me more energy (despite a leaden feeling in my legs and sleepiness - go figure!) - I think because I'm not triggering my sympathetic nervous system all the time. Atenolol improves my standing time and gets rid of the tachycardia and most of the palpitations. I also do salt/water/stockings because of pooling. Ritalin has helped with alertness and some brain fog; pyridostigmine/Mestinon is unclear in terms of whether it's doing anything.

As a side note, do watch out for albuterol/Ventolin or anything else that triggers the SNS - they have made me much worse for several hours at a time even though I do have to take them for wheezing/shortness of breath. Definitely makes things worse for me.