heathmcev

Great question... I too am wondering about differences in seeing a neurologist vs. cardiologist... I'm about to go to a EP for the first time next week.

Jump, I think you've got it. Your words, and Tearose's paper towel theory are fabulous. Not to mention really helpful aids in figuring out how to talk to our doctors & family members who aren't quite getting it.

Before I started getting POTS symptoms I was in the best shape of my life, working out w/ a personal trainer, working long hours at my job, etc. I had more muscle than I had had since high school. But I started to get such crushing fatigue that i could barely walk a block without having to sit. Since then I've definitely become deconditioned and some days just walking the dog is like torture (good thing she pulls like a sled dog... I just let her do all the work & drag along behind her!). We just got a Wii Fit at our house, though, and it's fabulous! There are a lot of easy standing-only exercises -- almost all of the yoga poses are standing only. I do get dizzy w/ the bending ones, so only do those on the days I'm able. There are also balance & strength exercises. I pretty much ignore the aerobics unless I'm in an unusually asymptomatic period. I've found it to be a gentle, fun, and personalized way to do what I can here and there. I may last 5 minutes... or 45 if I'm lucky.

all4family, since I've been on cymbalta I've had a few times when I've had crazy unnatural energy like you described in your first post. It's pretty rare - but I'm having 2 or 3 days like that now (although as i say that i'm getting dizzy). It's kind of like winning the lottery and getting a day or 2 to feel productive and quasi-normal. I'm soaking it all in now in case it slips away later

Thanks for your responses... i really appreciate everything you all said. I bought some tumeric & himalayan salt to start and am starting to figure out where MSG & gluten appear in foods so i can maybe try a restricted diet to rule some things out. It seems like a trial & error process, which I've gotten good at going on and off so many depression meds over the years! Patience, right! I'm also getting names of physicians to interview!!

Thanks! Be well,

Heather

Hello!

I just have to start by saying how amazing this site is! It was one of the first things my doctors recommended and I am so thankful for all of your wisdom. I have learned so much and certainly don't feel as alone as I first did. Every time I log in and read, I sit here and go "me too!!!" over & over.

My 5-second summary: I'm a 33 y/o woman, diagnosed last month w/ POTS. I think I've probably had it since 2003, and have just been struggling since then to figure out why my body feels so out of whack. I also have the cold hands/feet, constant sweaty armpits (ugh), extreme fatigue, IBS, major sensitivity to meds, etc. I haven't been able to work much since 2005 - both due to a major depression diagnosis & what I now know to be POTS symptoms. Over the last month I've started salt (2g/day), liquids & compression socks. Am also on a micro-dose of Cymbalta.

Here's where I'd love your input & advice:

? How do i begin to find a PCP that knows what to do w/ POTS? Mine is just clueless & makes me feel like a hypochondriac.

??Electrolytes: a nutritionist has recommended I skip all the electrolyte drinks (she thinks they're largely marketing ploys) and take trace minerals. You buy it as a liquid and put into whatever you're drinking throughout the day. Has anyone tried this?

? Has anyone tried flower essences - like Bach's?

? Does it take you longer to get over being sick (even a little cold) than most?

? Are digestive issues common? How do you deal w/ them? I've had IBS since age 18 but have horrible side effects from the meds, so try to manage it on my own.

? Other than over-doing the activities, what are common triggers? Are there foods that are good to avoid w/ this regard?

? My sleep is always off kilter, which I read is common. 2 Simply Sleep & hot milk usually works, but are there natural methods that you all find helpful?

I truly appreciate any feedback!

Best,

Heather