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Posted

Before POTS, I was a distance runner... working my way up to be able to run a full marathon. The months before the onset of POTS, I ran my first half marathon and it was one of the happiest/proudest moments of my life.

But since then, I've barely made it back to running 3.1 miles(5k), and even then, I feel totally horrible.

I am about to start taking Inderal, and my neurologist who is also a runner told me straight up "you're a runner... running is never going to be easy for you again once you start the beta blockers"...

crap!

I need the running as a form of stress/anxiety release, but I've found that with the increasing exercise intolerance, it has only been adding to my stress.

Anyone run before POTS, and then make it back to that place?

Posted

Many people rebound significantly from POTS and she is probably one of them. But it can take time. I think the average person diagnosed with POTS can expect significant improvement. this is according to my doctor who is a specialist in autonomic dysfunction, and according to any of the literature out there. You have much reason to be hopeful. Keep in mind that users of DINET do tend to represent the more ill patients--those who recover generally don't stay on support forums.

Posted

I play roller derby, and I run, and I just completed Tough Mudder (12 miles + obstacles) last month. I was not able to tolerate beta blockers, and there is no way I could have run while I was on them. Maybe you can find another combination of meds that will help your symptoms? Between midodrine and florinef I have been able to find a balance that works for me most of the time (I still have crashes and flares where I feel bad, it's just less often).

Edited to add: I was never very athletic early in life, and I only started all of this after I was diagnosed. So, I think it's definitely possible. You may not really be able to plan your training the way you want, and you may have to take advantage of days when you feel less awful than others, and take breaks when you don't want to, but I don't think you have to give up on it. :)

Posted

I didn't tolerate midodrine, florinef, gabapentin, etc. Beta blockers and maybe some form of SSRI are my next option...

I know that a lot of people work around the bad days, i just feel like I have more bad than good. I guess we'll just keep workin at it.

Posted

I've only just started running on the BB's, but I was able to go from no exercise at all(except from max half an hour walking a day) to do a 5k non-stop on my second run. I did have some symptoms afterwards, but not the fatigue (without the BB's I would have been curled up on the floor). Although I definitely had an easier time running pre-pots, I'm doing a LOT better running on BB's than I did off them. Unmedicated, I can hit 190bpm walking, so it it amazing to be able to run with a pulse of 160 now. My body/legs feels heavier than without the BB's, but I don't get shortness of breath until I'm actually giving some effort, and that makes running a lot easier. However, although my bp is extremely low, it does rise when it's supposed to, so I don't pass out. My guess is, that if your lucky and the BB's help you overall, they will also help your running - but then again I'm no doctor...

Posted

I miss running so much! I love it and it has been so hard to not be able to anymore... now I have days where I'm lucky if I can walk to the kitchen without feeling like I'm gonna collapse. I'm hoping that one day I will get to run again... I know that it won't ever be the same probably but I still miss the feeling of accomplishment that you can only get with running.

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