Mrs. Burschman

Janey,

I'm happy for you coming to terms with everything. It's not easy. We're here for you.

Amy

I have kind of a weird vision thing. Sometimes things that are flat (floor, computer screens) don't look flat to me. It's especially bad if I've been standing a while. Eye doc couldn't find anything wrong, so I'm chalking it up to my stupid autonomic nervous system.

Amy

I might respond well to the opposite... a "3 day feast, followed by a few hours in a refrigerator"... now that might do something for me!

Perhaps an Alaska Cruise would suffice!

When we going?

Sign me up!

Good luck! I hope the sick goes away quick and doesn't spread!

Amy

I've never even heard of that. Would it be because of lack of blood flow, I wonder?

Gosh, I hope it grows back fast without problems!

Amy

Thanks for weighing in, all. It's always nice to know that I might be weird, but at least other people are, too!

Amy

I've noticed that sometimes after meals (especially larger ones), I'll notice heart palpitations. Annoying!

Does anyone else notice this, and does anyone know why that would happen?

Thanks!

Amy

I'm sorry, Erika. It's difficult to feel "different" sometimes. It's especially hard sometimes, it seems, because most of us look so "normal."

Just know that we understand.

Amy

When used correctly this is the term for the type of POTS where sympathetic overactivity is the primary cause of the symptoms rather than it being an appropriate response to inappropriate circulatory activity (pooling, etc).

Thank you for the very useful "Cliff Notes" version of hyperadrenergic POTS!

ShadesOfGrey,

A lot of people with POTS feel worse when they get their periods, so many take birth control continuously.

BCP do tend to raise blood pressure, so they might not be good if you have high blood pressure from POTS. But they might be good if it's low.

However, for those of us who get migraines with auras, they do increase stroke risk. But I've never heard that POTS itself is a contraindication for BCP.

Amy

How did they determine that you were hyperadrenergic? And what medications did she recommend? I'd like to know!

I'm glad your visit went well.

Amy

Ernie,

I'm glad to "see" you again, and even more glad you've been gone! Here's to continued improvement!

Amy

Lynn,

I don't know which specialist would be best to see. I haven't seen anyone about any possible autoimmune links.

Amy

Thanks, Jana! That's very kind of you.

I set up a fundraising page in Sophie's honor because I figured that some of my friends and family (and me, frankly) might want to do something, but wouldn't know what to do. Now they have an option! I'm trying to raise $1,000 for research. I was impressed with Citizens United for Research in Epilepsy because 96 cents of every dollar given goes to research and advocacy. Can't get much better than that!

Amy

Bella,

I have horrible balance. I feel like I probably look like I'm drunk a lot. It doesn't usually lead to running into things, but sometimes! Corners especially. I misjudge.

Amy

Man, if you think it might help, and if it's not causing side effects, I'd go ahead and keep taking it (with your doctor's knowledge, of course.)

I know that some people with interstitial cystitis take Zyrtec. It seems to decrease their bladder inflammation. Seems like there's got to be some sort of mast cell component when that's the case.

I've taken it on and off for allergies, though I can't say I've noticed a difference in POTS symptoms when I did. I wish!

Amy

Suzy,

I'm so sorry to hear about your grandmother. I hope that your family can find some peace in this difficult time.

It sounds like you've been crazy busy! Thanks for checking in with us!

Amy

Thanks for asking, KayJay!

She's doing OK. They're trying a second antiseizure med because the first one wasn't cutting it. This one has reduced the frequency and intensity of her seizures, though she's still having a few per day. They're planning to slightly increase the dose to see if that helps.

Otherwise, she doesn't appear to have any tumors in her heart, liver or lungs (for now.) The brain tumors are small, and her pediatric neurologist said they appear to be the type that don't grow very fast, if at all, so that's good. We'll just have to wait and see. Kids with tuberous sclerosis can be almost normal, or they can be severely developmentally delayed. We're just praying and hoping and loving her as much as we can!

If you want to see what she looks like, here's a link to a fundraising page I set up in her honor through Citizens United for Research in Epilepsy. She's a doll! That's my finger she's chewing on in the photo.

http://cure.convio.net/site/TR/Events/Gene...&pxfid=1220

Amy

Hi Aubrey. Sorry you have reason to join us!

I just wanted to welcome you and offer one answer. I took birth control pills for years with no problems. In fact, it raised my blood pressure enough that I actually felt better. I ended up quitting them, however, because I have migraines with auras and they are supposed to greatly increase your stroke risk if that's the case.

Incidently, does the heat bother you? I think I'd DIE if I lived in Las Vegas!

Amy

I bruise easily, and none of those reasons listed really fit, as far as I know.

Amy

Nice! I think I'll move to Illinois, too!

Amy

I found this little prayer that helps by Roert Schuller, in the book Time For Joy DAILY AFFIRMATIONS.

"Lord (you can use whatever you believe in) give me the guidence to know when to hold on and when to let go and the grace to make the right decision with dignity."

I like that. Thanks for sharing it, and I hope you don't have any more scary episodes!

Amy

Hi Noodle. Welcome to the forum!

I self diagnosed before it was confirmed by a tilt table test. I'm not saying it's the best thing in the world to do, but it does happen.

It was a relief, too. I think most doctors just thought I was a nut job.

As long as I take Paxil, I'm highly functional. I walk 30 minutes to and from work each day, and I usually work out on our elliptical, too. I can stand for long periods (though I often do feel cruddy while doing it.) I'm not bragging -- I'm just pointing out that not everyone is severely disabled by POTS. Although I AM severely disabled if I don't take the Paxil!

I hope you get answers about your health problems. I think everything's worse when you don't know why you're having issues!

Amy

Man, it would be awesome if you could stay feeling well by simply taking Zyrtec! Let's hope it keeps up. I'm glad you're doing so well!

Hi Lynn! We're glad you've joined our happy little community, though sad you had the need.

I think I might have underlying autoimmune issues too, given that along with POTS I have been diagnosed with interstitial cystitis and ulcerative colitis, both of which are considered (at least by some) to have autoimmune origins. I have migraines with auras, too, though I just get blurry vision.

I just wanted to say welcome, and if you learn more about links between your issues, please do share!

Amy