EllenD

Thanks for this poll, I've wondered about this for a while. I was given high dose prednisone for a bad reaction unrelated to POTS and all of a sudden I had absolutely no POTS symptoms! Unfortunately they came back as soon as I stopped the steroid. I've asked my docs about this and was told that it was probably just fluid retention from the steroid but I've tried Florinef which causes fluid retention and it didn't help like the prednisone did.

When I was first diagnosed I was also told to aim for 5 g of salt. Later when I complained about the salt being irritating my doc changed it to 5 g sodium and recommended some be in the form of sodium bicarb (baking soda) since it tends to be less irritating. Also, I hate swallowing so many pills so I started drinking a cup of chicken broth instead (just a cube of chicken bullion in hot water). It has about a gram of salt in it and my doc was ok with it as an alternative.

This has definitely been an issue for me - so much so that my doctor put me on birth control pills for 3 months at a time (so I only have my period 4 times a year).

Thank you all so much for taking such time to reply! I'll try to continue the exercise but slow down when I'm doing it. I've never tried sit/stands, but I think I'll give it a try since one of my problems has been walking to the next machine at the gym. Thanks again, it's so nice to hear from people that understand what it's like!

I’ve had POTS for five years now and am trying Dr. Levine’s exercise protocol – not as part of the study so I don’t really have anyone to give me feedback. I’ve tried exercising before, but would always overdo it and pass out shortly after stopping. I’m now 4 weeks in and I find that I can do the exercise without the immediate dizzyness, but it’s made my POTS symptoms MUCH worse. I’ve read posts from other’s who have tried to exercise and it seems like I’m having a different experience so I’m hoping to hear from someone further along in an exercise program that had a similar start. First, I have no problem getting my HR up, but I do find it difficult to keep below the max rate prescribed – on the rowing machine I keep having to slow down, and for the strength training my HR goes above 150 every time. Second, I was told to expect fatigue for the first month (which has been very true) but it seems to be more than that. I’m having a lot of tremors, my chest is very tight and I’m near passing out more than I was before starting. Finally, when things get bad I’ve usually been able to recover (for a little while) by getting a saline IV. The last few weeks I’ve tried this several times and it hasn’t stopped the symptoms like it usually does. I really want this to work and I’m willing to push through if there’s a hope that things will improve. Has anyone else been able to push through and come out ahead?

I have a lot of trouble flying. For me it's at least partly dehydration- airplanes have very dry air. I fly with wheelchair assistance, it's really necessary on the arrival side! Also my doc gave me a note to carry pedialyte onto the plane and this helps as long as you start drinking it before the symptoms get bad- doesn't taste great but it's got more salt than Gatorade and they now sell it as a powder that you can add to water so you can carry it on the plane without a prescription. Besides that just get ur feet up- even if it's just putting a bag under your feet any bit helps. You can also try 'seabands' if turbulence makes you motion sick. They are wrist bands that are supposed to press on an acupuncture point. I tried them for driving long distance and at least they didn't make anything worse. I have friends that swear by them though, so I think you just have to try and see how they work for you. Good luck!

I definitely get sick easily. I've talked to my doctor about it and he agreed that this can happen with POTS. His take was that you need energy to fight off infection and viruses, and most days all my energy goes to staying upright.