Mrs. Burschman

Angela,

I understand your frustration. I tried to take Effexor, but it actually triggered daily migraines. Which is odd, because sometimes they put people on Effexor to prevent migraines!

I don't know what to say about the neuro-psych evaluation, but you're NOT nuts. So it wouldn't show anything anyway, right? Sure, maybe it would show that you have high anxiety. Well, no kidding! No. 1: You have a chronic condition. No. 2: That chronic condition causes the same symptoms that anxiety does!

We're in such a bizarre territory with POTS. It seems like it's a condition that kind of overlaps mind and body, just like the autonomic system overlaps mind and body. So no doctor quite knows what to do with us.

But I do know this: I love my psychiatrist! She's the one who knew something was going on besides your garden-variety anxiety and got me an appointment to see the neurologist who diagnosed POTS. And she's been a heck of a lot more useful than the neurologist.

And don't apologize for ranting! That's what we're all here for!

Jennifer,

P.S.: Did he say anything about SSRI antidepressants? I'm just curious because they often are used not only for POTS, but also for anxiety. Wellbutrin isn't commonly used in people with anxiety. I also know that they use SSRIs sometimes for people who struggle with health anxiety. (Paxil hasn't completely eliminated my tendency to think everything is some horrible disease, but it certainly does help calm down my body!)

Jennifer,

I recently quit taking it, but I was taking a baby dose (only 100 mg.) I don't think I've noticed any difference (besides being a little anxious about stopping it!)

Never hurts to give it a try!

Amy

Nolie,

What a great coincidence! I'm glad you didn't have to explain it!

Yeah, I eat enough chocolate, maybe I should add that to my RX list in my signature!

Amy

Pacer,

I get night sweats a lot. Kind of like menopause. But I'm only 31!

"It would be nice to start of section of just photo's taken of Pots people who have met , nice to put faces to names and places around the world and also really nice to be able to share the experiences of being 'out in the big world ' especially for you guys who have great difficulty getting out , travelling any distance let alone gong to another country."

Ami,

There is a special "members only" secret Web site that has pictures of some of the members. I've been meaning to send in one of me -- I just need to bother someone to scan it in for me. If you send a message to MomtoGiuliana, she can send you in the right direction.

Cheers! (I can say that because I've visited your lovely country and my sister-in-law is British.)

Hi Always Hope!

Welcome to the board! At the same time, we're all sorry you're here, but you've come to a good place!

1. Close friends: There are helpful descriptions and/or brochures on the site. It might be helpful to print out a few copies or direct them to this site to learn more. I sent the link for DINET to a couple friends so they could get a better idea of what was going on. As you learn more, it should get easier, too.

2. Close acquaintances: This is harder! I'm reading a good book called "Sick and Tired of Feeling Sick and Tired" which might help you also. I was just diagnosed too, so I'm going through some of the same issues. I've found maybe the best explanation for my particular brand of POTS is something like, "I have a chronic condition in which my body doesn't regulate itself properly. It causes a wide variety of odd symptoms. Sometimes they get in the way of what I'm trying to do, and I have to rest more than I used to, etc." Something like that. Enough information so they get the general idea without comprimising your privacy.

3. Regular freinds: Maybe a halfway point between the other suggestions!

I think what's right for me might be different than what works for someone else or for you. You will figure out how best to deal with it. And if you're having trouble, you know where to come!

Hmm. It seems like if it helps, who cares if you get "addicted"? You could say I'm addicted to Paxil. I can't stop taking it -- my ANS goes haywire. And my grandfather took phenobarbital for years and years and years for ANS issues and never had a problem.

But what do I know, I'm a patient, not a doctor!

Amy,

That is bad luck! Hopefully, your luck will be better in the morning! Take care.

bqsu:

I was just curious -- how come the neurologist doesn't want you to take Xanax? If it helped that much, it really stinks that you can't take it.

For some bizarre reason, the benzodiazepines didn't do a thing for me.

I've had a lot fewer migraines since I started taking a magnesium supplement daily. It also seemed to help when I stopped my birth control pill.

I'm lucky. Midrin works just great for me. And it's cheap! Triptans also worked, just not as well.

Amy

We miss you, Miss Melissa!

We're hoping you are feeling a bit better by now.

Amy

I also feel crappy in the mornings (just really jittery is the best way to explain it.) And I hate my alarm clock! I was curious, does anyone know if there is an explanation for why we feel so awful in the mornings? I have problems with nausea early, too. And no, I am not pregnant!

Amy

Nolie,

This won't probably help with the physical symptoms of anything, but it might help psychologically ...

It seems like so many of the chronic conditions I have might easily all be attributable to the POTS -- or dysautonomia. So instead of thinking of this huge list of things I have, I'm trying to focus more on the fact that my autonomic nervous system is out of balance. Irritable bowel? My nervous system is out of whack. Interstitial cystitis? The nerves that innervate the bladder wall (my sympathetic nerves) are on high alert. PCOS? I even asked my reproductive endocrinologist about this one. He said that having dysautonomia could easily cause my body to be slightly out of balance when it comes to hormones. Migraines? Well, lots of people with POTS get that.

I guess what I'm saying is, I don't know if it will help you, but being able to link everything together in my mind seems to help me. In some strange way, I guess it makes me feel less sick to know that it might all be related.

I'm glad that your husband is understanding. That's a blessing!

Sending you a hug (really gentle one!)

I'm sorry, Mary. For some reason, it seems like body size doesn't always correspond with blood pressure. My brother-in-law (my husband's brother) is thinner and taller than my husband but has had to be on several medications for blood pressure since medical school.

I'm sending good wishes along for your son!

I'm sorry to hear it, Nolie. It stinks when you have to add a new diagnosis to an already impressive list of problems (believe me, I understand what that's like ... PCOS and POTS within five months of each other!)

Anyway, just wanted to let you know that someone in South Dakota cares!

Flop,

Yeah, it would be a lot more remarkable if they didn't find one, wouldn't it? Then they'd make a show about you and I'd watch it on the Discovery Health Channel or The Learning Channel (I don't know if you get those on your side of the Atlantic, but they have programs about goofy medical stuff all the time).

Amy

Doctorguest,

That's good to know. I had thought maybe I had an inadequate TTT because they didn't give me any medications. They just tilted me up for at least 10 minutes and watched my heart go pitter-patter.

Amy

I asked for them at one pharmacy and they usually have them, but they were out. I guess construction workers like them when it's really hot out and they're sweating gallons.

So there. Something we and construction workers have in common!

Amy

Does everyone with POTS get pooling? I haven't really noticed much besides a slight red discoloration sometimes, such as after showering.

Amy

I get them easily, too. I think it's just a sign of our autonomic nervous systems being a little out of whack, since that's what causes piloerection (goosebumps -- I'm not sure I spelled that properly.)

I've noticed that I even get them when I should be hot, not cold, such as when I go for a run. Weird.

Amy

Hi Lloppy!

I'm glad that you're working on figuring out what's best for you! I think it's all a matter of moderation. Realize your limitations, but remember all the things that you still can do, also. Get support here, but look for support in other places, too (and especially within yourself!)

I'm still working on these issues, too. My challenge is to realize that a lot of what I feel is physiological, not psychological, as I've thought my whole life.

We're here for you!

Amy

Lucky,

Yeah, I noticed that with V8 juice. They're saying in the ad, "now less salt!" I'm saying, "Put it back in, you bozos!"

Amy

Hey Elle,

Did your doctor figure out what causes the burning? Is it part of the small-fiber neuropathy?

Amy