Mrs. Burschman

Hi Maisie. We understand what you're going through. I think that nearly everyone here has fallen into what we like to call "POTS holes." Symptoms get worse, and then they get better. Then they probably get worse again. It's really frustrating.

Medication can make a big difference. Have you and your doctor looked at that? Paxil has worked wonders for me -- well, until I fell into my own POTS hole in September. I need to find a good doctor (I moved this year) and revisit my medications. Bleah.

Please don't give up, and we're here for you!

Amy

I have some daily fatigue -- worse if I don't get enough sleep -- but it doesn't really affect my functioning much.

I've had a pretty crummy memory for quite a while. I forget words, and it's worse when my POTS is worse.

I didn't vote, because I didn't really feel like any of the options quite fit.

Amy

thanks mighty mouse!

Mrs. Burschman: its me with POTS! not daughter...i copied that from the newsletter!

Oh, sorry Ana. I was confused!

Nice! Can you please clone her and send a copy to me?

My endo suggested Pristiq (SNRI) for just that reason, I wanted enough energy to make it through the day.

OK, this is entirely off the subject, but those ads for Pristiq with the wind-up doll are so stupid, they might KEEP me from trying it. The lady picks up her wind-up doll and stares at it for the longest time. I keep hoping that someone will do a parody in which she starts smacking the doll on the tabletop.

Sorry. Back to serious discussion.

I know a few of my "triggers," though they're kind of weird ones.

1. Bright lights in my eyes. I once got one while getting a haircut, because light from the door was reflecting off the mirror in front of me into my eyes.

2. The Tower of Terror at Disney World. In other words, I've gotten migraines from TOO MUCH STIMULUS. (This ride is HORRIBLE, by the way. If you don't like 13-story drops, DON'T DO IT.)

3. Anger. A couple of times, I've gotten really angry and it's triggered migraines.

4. A sudden change in my sleep/wake schedule. This used to be an issue, because I worked nights. I'd always get migraines when we went on vacation and had "normal person" hours. Now I work days, so that's not an issue.

I don't know that I have any food triggers. I've never found any.

And I think we serve Gatorade punch at the reception.

Hi, sj! We're glad you found us, though sorry you had the need!

What kind of doctor you can go to for POTS is pretty variable. I was diagnosed by a neurologist, but a lot of people are treated by cardiologists, too. The most important thing is to find someone who knows about POTS, or is willing to learn if they don't. And find someone who is willing to work with you. Treatments are really variable, and it often takes a lot of trial and error to find something that works. It's not as simple as some conditions might be.

Good luck in finding the right doctor -- and some good answers!

Amy

Ana,

A lot of people who get POTS develop it suddenly, such as after a virus, or due to a growth spurt. Perhaps your daughter will be one of the "lucky" ones who develops it in adolescence and it eventually goes away. We can all hope!

Amy

Arizona,

I'm so happy to hear that your surgery went well, and you're feeling good. Congrats! I'm also horrified hearing about that other doctor. Disgusting.

I hope that you continue to heal, and feel better!

Amy

Sure sounds like it could have been a migraine.

I'm lucky (yeah, whatever) in that I get visual auras right before a migraine, so I know when I'm getting one and can usually head it off (pun not intended) by taking prescription Midrin right away. I still get some pain (usually worse on one side) but can function. Once I can see again, that is.

Definitely discuss with your doc.

Amy

YES. When I've felt my worst, I felt like the room was spinning when I laid with my head turned one way. Strangely enough, when I turned my head the other way, it wasn't as bad. Weird.

Most of us have all sorts of kooky symptoms all the time. You get used to it after a while.

Amy

Post away! That's what we're here for. We don't count.

I'm more likely to feel dizzy the worse my POTS symptoms are. And my POTS symptoms have come and gone. Better sometimes, worse sometimes.

Amy

Hi Jenna. I'm glad you found us, but sorry you needed to!

I kind of black out climbing stairs. It makes my heart race. I had to run up two flights of stairs the other day, and it took hours to recover. Bleah.

Amy

YES. Paxil has been my wonder drug. It's almost like it "turns down" my autonomic overactivity, like a radio knob "turns down" the volume. It's all I've needed for about 15 years.

Until now, that is. It seems now like it's not cutting it. Not sure if my POTS is getting worse, or what. So I'll be looking for a new "wonder drug," I guess.

Amy

YES. Paxil has been my wonder drug. It's almost like it "turns down" my autonomic overactivity, like a radio knob "turns down" the volume. It's all I've needed for about 15 years.

Until now, that is. It seems now like it's not cutting it. Not sure if my POTS is getting worse, or what. So I'll be looking for a new "wonder drug," I guess.

Amy

Bck in 1993, the cardiologist who didn't know Pots from pans, put me on verapamil.

Lois

Ha! Cute!

Wow, Paige! That must have been really scary!

I've never had anything like that happen, but then I'm one of those "lucky" POTS people who doesn't faint.

I hope you get some answers! Just don't let them tell you it's psychological.

Amy

Hmm. Only time I lost a size was when I stopped taking birth-control pills. Went from a C to a B.

Amy

Cat,

I'm sorry to hear that, and I know what you mean. It's so depressing to get new diagnoses. After a while, you're thinking, "Isn't my list already long enough?" It's frustrating.

The good thing is, at least if you do have Ehlers-Danlos, it will have been caught and the proper precautions can be taken.

Amy

Thank you, Ramakentesh! I wanted to protest a previous post, but wasn't sure how to go about it. I'm glad you did it.

Masumeh,

Thanks for stopping by and letting us know! I'm really happy that you're doing so well. I hope that it keeps up!

I tried biofeedback training, but it only worked when I was actually doing it. Which doesn't allow one to do much else with one's life! I'm so glad you've found it helpful.

Amy

I feel my heart beating in my chest -- it's uncomfortable. It can make me feel tired, too.

Sometimes I feel my heart almost buzz, and I might feel like I need to cough. Don't know what that is.

Amy

I tried BIOfeedback. I'm not sure if that's similar or not. It didn't work. It was relaxing, though.

Amy

I did some biofeedback sessions, and the biofeedback expert dude could tell that I had dysautonomia of some sort because my heart rate variability was screwed up. He didn't have any solutions on how to fix it. That's the only experience I have with such things.

Amy