Mrs. Burschman

Well, I did biofeedback for a while. I was able to reduce my heart rate somewhat -- but never down to normal. And as soon as I stopped each exercise, it was back to my normal. So I guess if I just did biofeedback 24-7 it might help. Otherwise, not so much.

Biofeedback expert I went to said as much. He gave up on me.

That's not to say it's a BAD thing to do. It was relaxing. I just don't think it's a cure, at least for me.

Amy

Ugh! Me too! I get it sometimes. I'll have it for a while, then it will go away (thankfully.) It's really uncomfortable. I always feel like I have to point and flex my feet continuously so I feel that instead.

I'd describe it as my legs feeling nauseous, although I know that doesn't actually make sense.

Amy

I wish I was still an adolescent so I could take part!

I have no idea what type of POTS I have. I wish I did. I can't imagine that it wouldn't be useful in management.

Amy

Mrs. Burschman - Seriously? They noticed a major improvement? I've been trying to read up on it and came across a few stories of people who are convinced there body was too busy fighting Gluten and causing damage. Hmmm. I'm hoping I'll get better!

The woman I'm talking about (my mom's cousin) didn't have POTS or autonomic issues, as far as I know. She was REALLY sick though. Was down to something like 90 pounds, horrible gut pain, etc. It seems like I remember that her hair was even falling out. When she found out it was celiac and went on the diet, she had an amazing recovery. She's doing great now, as long as she avoids gluten.

Amy

Maggie,

That is very kind of you, and it sounds lovely. I hope someone is able to take you up on your offer. It would probably be fun to meet!

Amy

Hey Detrick,

Lots of people here on the board take SSRI's for our POTS/dysautonomia/NCS, not depression. I've been taking Paxil forever. It is annoying, however. Sometimes I get mailed things from my insurance company about "Coping with depression." It's stupid, because SSRI's are taken for all SORTS of things.

I also take metformin, a diabetes drug, for polycystic ovarian syndrome. I don't have diabetes. So I get mailed stuff about diabetes, too.

It's annoying. I feel your pain.

Amy (Mrs. Burschman)

I know of one woman in particular who was sick as a dog until she finally was diagnosed with celiac. Went on the diet, and feels great now. So celiac stinks. But the possibility of a "cure" or at least vast improvement is wonderful!

Amy

I would chose whichever one will make your former classmates say, "Wow! She looks great!"

@Amy: I don't take offence with you at all. I am sick of being told I am causing this to myself and I need to stop digging for answers and get therapy or go on antidepressants. Like I explained to ramakentesh, to say the people around me don't think I have POTS will be an understatement .

Keep in mind, however, that SSRI or SNIR antidepressants help a lot of us with the symptoms of POTS. So don't automatically punch any doctor in the nose who suggests it. Just if they think it's all "anxiety."

Amy

Ninth in my high school class. Graduated from college in May summa cum laude. I'm going into journalism, so obviously I'll need my brain.

Hey Shadesofgrey49,

I spent 10 years in journalism before switching careers (politics.) Congrats on graduating, and good luck in finding a good job that works for you!

Amy

Hi Niki, and welcome!

Have you been diagnosed with POTS or another autonomic disorder? What you describe isn't one of the typical symptoms, but there are so many ways they can manifest themselves. When I was at my worst, I had tingling in my hands and my feet, and a few times, I had trouble walking because I felt like my legs were rubber and would just go out from under me.

It sounds like a good question to ask your doctor.

Amy

1. I have had POTS for years, and I've done some daylong hikes. I did Mount Lassen with POTS, which is above 12,000 feet. This summer I did a nine-mile hike in the Tetons. So yes. Just because you can hike doesn't mean you don't have POTS.

2. Xanax does help a lot of people with their POTS symptoms. Me personally, it doesn't.

3. I walk 1/2 hour to and from work each day, and also do 30 minutes on the elliptical. It's a little harder than it used to be for me right now (I'm in a bad period right now) but I can still do it. And yes, I have POTS.

4. I'm usually fine walking around. Standing still I usually feel cruddy.

5. They can. Keep in mind that anxiety and POTS can feel a lot alike, because both can include overreactivity of the autonomic nervous system. HOWEVER, people who are "just anxious" do NOT have positive tilt-table tests. So the doctors who say it's "just anxiety" are JUST PLAIN WRONG. If I sound irritated, it's just because I was misdiagnosed for 15 years as just being a basket case when I really did have something physically wrong with me.

Hope that helps!

Amy

Cat Lady,

I'm sorry. I would be upset, too. I really love baked goods. But if it makes you feel better, it's probably worth it.

Doesn't make it any easier, though.

Amy

Hey Nina! I'm glad DINET is on Facebook! I requested membership today.

Amy

I think it can be helpful. Deconditioning can be a cause of POTS, so it helps make sure that's not the case.

Also, if pooling is an issue, building up the leg muscles can help improve circulation. And there's always a psychological boost that comes with being able to get some exercise.

But it might also be that those of us who are able to exercise aren't as sick to begin with, not that the exercise made us better.

I don't think exercise has any relationship at all to my POTS. I've always been active, even before I started to have symptoms in my teens, and I've kept it up even with dysautonomia. I don't think it's helped or hurt either way. It certainly hasn't helped me "get over" it.

You'll have to see what other people say, though. They might have different experiences.

Amy

It's weird -- sometimes when my POTS is particularly bad, I have trouble finding the right words (which stinks since I'm a copywriter.) Then I'll improve, and it's not a problem anymore. Very odd.

Amy

Good! I hope it helps!

Amy

I think it helps to show that it's just POTS and nothing else heart-related. I did it. It didn't show anything out of the ordinary for POTS.

I didn't feel like it was a waste of time or money, but my insurance paid for most of it.

Amy

Hearts, no, migraines, yes.

Just got back form Vandy and I'm confused as ever!

Argh! That's really frustrating. Especially the have-to-be-off-all-your-meds part.

I haven't ever taken part in a drug study. I never had any reason to, because Paxil was working so great for me. Not as great anymore! I'll be looking for something else to add or use instead. So let us know if you find something great!

Do you know if it's the type of study where you might get into the placebo group and not get any drug at all? That's what I'd worry about. I'd be sick as a dog. I can't function without meds.

Amy

Finally got on facebook. Maybe some of you could pm me? Right now I have 3 friends! Can I become a "fan" of dinet? Kari

Hey Kayjay! Welcome to the world's biggest time sucker! I do love Facebook, though. I'm more in touch with family and friends than I have been in years!

There is a group for POTS, and dysautonomia, but I don't pay much attention to them. This board is much more useful.

Send me a PM with your Facebook name, and I'll be your friend! You might regret it, though. I post a lot of goofy observations.

I don't think DINET is on Facebook, but I might be wrong.

Amy

I have nothing useful to add. But congratulations, and I hope it goes as well as possible!

Amy

Is it typical to have a higher resting heart rate?

I think it is pretty typical. Mine's almost never below 90, and it can get up to 140-160. I've never been able to follow the guidelines for what my heart rate should be during exercise. According to those, I'm terribly out of shape, and I'm not.

Amy

Hi Jen! You've found the right place! We're both glad and sorry that you're here.

Keep looking for answers. It's a long process, and some of us have yet to find out why we ended up with POTS/dysautonomia. But most of us do find some relief once the right medication and lifestyle adjustments are made.

Welcome aboard!

Amy (Mrs. Burschman)

I'm sorry, Nina. I wish I could take away your pain. Nothing's worse than hurting all the time!

Just know that we're here for you.

Amy