Feeling Kinda Stuck - Thinking Of Breaking Up With My Beta

[Anoj]

Hello there. It has been a while since I've last written. I've been reading and lurking more lately.

It has been about 5 months since I was "officially" diagnosed with hyper POTS. At that time, my medicines were switched from Midodrine + Florinef to just a beta, Betaxolol. Since then I have noticed a marked improvement in certain symptoms, but a marked decline in others.

For example, I no longer get adrenaline surges. This is great! Most of my syncope spells were preceded by extreme adrenaline. Also, I really haven't had any fainting spells since I started the beta. I am able to engage in some "stimulating" activities that I could not do before, such as riding in a car for a long trip. That's the good news.

The bad news is that I feel like I'm pooling more, and my tolerance time to be upright seems to be shorter. I just don't have the energy to walk or be upright. I spend most of my day sitting and/or reclining (which I know does not help POTS!). I did go through another round of exercise therapy, and that didn't seem to help the pooling. I feel like the increased pooling could be because of the beta.

That's where the action plan comes in. I'm wondering if switching to clonidine or Labetalol would help. I've also been toying with the idea of adding Midodrine back into the picture. However, my doctor said during TTT, my veins were constricted - don't know how he knows this, but I'm confused about it to be honest.

Just not sure which direction to go in right now. Any insight would be appreciated. Thanks!

[corina]

I was thinking that compression hose might be of help until I read about the constricting your doctor mentioned. If you think you pool in your legs you migh want to give it a try. I'm so sorry you're having less energy, Maybe you could talk to your doctor and ask if changing bb's could be helpful? Wishing you the best!

[Anoj]

thanks! i assume that he meant my veins were constricting because of the high NE levels. there wasn't much other evidence. but i know i'm still pooling because i can see it. my TOES pool. lol.

[kayjay]

I am currently going off of my beta. VERY slowly. I think the only way to know if I am better with it or without it is to stop taking it. Good luck.

[CarrieJessica]

under docs order my beta and I are breaking up, its rather slow but all and all its over The obvious is meet with your doc and let him or her know whats going on. For me it took away my hearts ability for compensation from my BP rise and falls and made me pass out more often. New treatment plan time.

[Anoj]

what happens when you get off of the beta? what withdrawal symptoms do you have? why do you need to wean slowly, and how slowly? i am on the lowest dose. not sure if that matters.

[peregrine]

I stopped atenolol (I was at 25mg daily) "cold turkey" for my TTT - just didn't take my dose the next day. I would imagine for a higher dose you'd want to taper down, since it's easier on the body. No withdrawal symptoms other than more energy (hah!) and a faster heart rate and lowered control of POTS symptoms (grump).

FWIW, it's totally possible to have hyperPOTS and still pool (at least, we suspect I am hyperPOTS and I definitely pool). Be clear about asking your doc why they don't want you on midodrine, stockings, another vasoconstrictor - that will probably help you understand. My new neurologist says no midodrine because I "don't have low BP" - I'm pretty sure that (1) I have occasional low BP and (2) systemic BP has not much to do with pooling, which midodrine can help. So definitely don't be shy about trying to understand why you both pool and are hyper, and whether you can treat the pooling without exacerbating the hyper.