Potsie0002

I have had a lot of success with very gradual increase in recumbent bike exercise-- adding a couple minutes a week and only doing it every other day. No upright exercise until I could do 30 min on the bike 3X week without too much trouble-- took me several months to build up to that. a year later, I am now up to 40 min 3x week on bike. I now can walk 20 minutes on a good day without feeling too POTSy. If I stop this routine I feel much worse after only about 2 weeks. I also do small strengthening exercising lying down, and a little yoga when I can. I still have bad days and I always rest more on exercise days. But I can now tolerate standing and being upright for much of my day if I can have breaks to lie down. I can work again. And I know the exercise is a huge part of that success-- along with salt, compression stockings, diet, etc. I hope others have some improvement!

I have had success with a gradual increase of stationary biking, based on Dr. Levine's program but more gradual. No standing up to exercise and it took me 6 months to see a lot of improvement. I also consulted with a physical therapist to develop a Pilates type routine, all lying down. This has helped my symptoms a lot, but I continue to use many of the basic daily strategies to manage it.

Do you remember the name of the sleep doctor on DFW? It takes so long to get appointments that I would like to get started with the process. Thank you!

Ehlers Danlos Syndrome and other issues can cause swallowing issues as well. Have you been evaluated by a geneticist?

Low potassium can occur an it can be dangerous. If you get severe muscle cramps that do not go away I would go to the doctor during the episode. Magnesium 1000-1500 for me everyday. I find I have to get WAY more potassium in food than the average person, I think I do not absorb it as well due to GI issues. I drink coconut water, use half salt/ half potassium mix on food and this helps with preventing cramps. I also wear compression stockings, which helps with leg cramps and blood pressure. You have to be really vigilant about electrolytes, it seems with POTS it isn't just salt. Also, drinking too much water without enough salt can make salt too low, which will also cause cramps. Just my experience!

Low potassium can cause severe muscle cramps and so can any imbalance in electrolytes (salt, magnesium) so just something to keep in mind.

Thanks, I got in to him. Can he help with sleep issues or do I need another specialist for that? Are there other doctors, such as internists who have experience with POTS in DFW?

Does anyone know other specialists in Dallas ( not just cardio) who are familiar enough with POTS to incorporate it into a discussion of other issues?

I have been considering Midodrine, but I already have bradycardia and tachycardia according to the holter monitor.... So good to know!

Does anyone know what other medications doctors recommend when you have Brady and Tachycardia... Is this dangerous if not treated??

Thank you! Anyone know other specialists?

Hi,

I am looking for recommendations for cardiologists, electrophysiologists, sleep, neurologists, and any other doctor in the DFW area that could help me with POTS. I have EDS, which complicates things. I am on the waiting list for Dr. Levine.

I was told I need to rule out causes of POTs, including channelopathies, and I don't know how to do that or who can do that. One doctor referred me to the Mayo clinic and I am hesitant to spend so much money, time, and energy I don't have if there is a way to do it closer to home.

Any input would be great!!

Thanks so much!!