Mrs. Burschman

Yay! Welcome back!

I've used rubbing alcohol, cotton balls and QTips on sticky, grubby, gross keys, but I doubt computer makers would recommend that. It works, though.

I'm glad you're back among us!

Amy

I've never been able to tolerate cigarette smoke. Instantaneous headache, dizzy, nauseated. Bleah.

I usually can't tolerate perfume, either. Or noise. It's like my body is just way too sensitive to a ton of stuff.

Amy

FOR SURE. I feel HORRIBLE when I get overheated, and it happens quite easily. Heat is my worst trigger for feeling really awful.

It seems bizarre that the autonomic specialist didn't think heat intolerance was ANS-related. I think a whole bunch of people on this POTS board would beg to differ.

Amy

It's possible, too, that high blood pressure from being angry and high blood pressure from taking a medication would feel entirely different. Anger is one of my triggers for migraines, so I know it's a powerful emotion. You might have felt crappy because you were mad, not because of what your blood pressure was doing.

Unless fludrocortisone makes you angry, it might be worth a try.

Amy

Dustin,

DON'T LET ANYONE TELL YOU IT'S ALL IN YOUR HEAD. I spent a week in the psych ward for what even I thought was extreme anxiety. For some reason, I guess I didn't think it was weird that my "panic attacks" got better when I laid down.

Spent years in counseling afterward, trying to figure out where all the terrible anxiety was coming from. Until I finally put it all together. "Anxiety" does not cause you to black out going up stairs or cause your heart to rise to 160 when you stand up. I got the POTS diagnosis after a positive TTT.

The tough thing about the autonomic nervous system is that it's kind of at the intersection of body and mind. But most likely, there is absolutely nothing wrong with your mind. Although dealing with POTS is enough to drive anyone insane.

You are not crazy. What you're dealing with is real. And it bites. But we're all here to help.

Amy (Mrs. Burschman)

Drank two beers. After work. And I just feel tipsy.

Amy

Ugh.

The nice thing about friends is that you can choose them. We'll be your family when they aren't!

Amy

Guts problems = no fun.

Sorry to hear about your issues. I feel your pain!

Excellent, kayjay! I'm happy to hear it!

Amy

Valhalla is mentioned in research a bit... do they happen to have practicing docs? Looking at the NDRF listing and such, I'm wondering if they're pediatric specialists. Not sure. Anybody know or dealt with them?

New York Medical College

Valhalla, New York

I do like the name... perhaps that's where the bravest dysautonomiacs go when we die (for autopsy at least ?!?

Ha, ha! That's where my brother-in-law got his med degree. I think they might specialize in familial dysautonomia, which is an entirely different animal, but they might know POTS, too.

As for brother-in-law, he's a pediatrician, so not really useful to any of us.

Amy

Hookah, beer and nicotine. And lots and lots of pretzels. We're a wild bunch!

Amy

No. Regular medicine says its very individualized -- what helps and hurts eating-wise.

First goal is get this current flare-up controlled so I'm not dashing off to the bathroom all the time. Might look at the diet later. But honestly, I'm MORE than a bit skeptical of miracle cures. Sorry. Especially when they come with the words: "His quest for answers concluded with a visit to a California nutritionist who simply told him he was not healthy because he was not following God’s plan."

Um. Yeah.

Amy

I took tai chi at my local YMCA when I lived in South Dakota. You might check your local Y. It was cheap! And relaxing.

Thanks, all for the sympathy. It helps.

This does not help: the drug I've been prescribed costs more than SEVEN HUNDRED DOLLARS A MONTH if you're paying cash. It's only ten bucks for me, but HOLY COW! It's enough to make me sick!

Tomorrow, though, I have to be nurse to Teri, b/c she's having shoulder surgery. At least I'll get to take it easy the rest of the day and we can take naps together when I get her home.

Nina

Taking turns! Hopefully, you'll both soon be feeling well.

I guess I now have Crohn's disease. Well, I mean I had it before, but now I have an official diagnosis.

Fun times! Yay! I love chronic diseases! Clap, clap, clap.

Sorry. I'm just annoyed. I HATE taking medications, and now I get a new one -- Lialda. I'm hoping it will help reduce the bathroom trips.

At least the doctor was really nice. She knew about POTS and told me the name of a cardiologist she really likes in the same office who she said treats POTS. So that would be convenient.

I'll stop whining now. Sorry.

Amy (Mrs. Burschman)

You see, I don't know what negative effects this is going to have on me, that is why I haven't tried it since then. The herbal shisha is made out of Sugar Cane Bagasse, which is linked to Bagassosis, or Pulmonary Fibrosis, which scares the ever living poo out of me (I wish.. lol). The regular shisha tobacco contains, well, tobacco. If that were to have less health effects, I'd be willing to try it, but my fiance doesn't approve of that idea anyway.

Hey Jeff. I don't think I've seen you around these POTS parts before. Welcome!

Do you know how much exposure people have had to the bagasse before it led to pulmonary fibrosis? If it was way more than you'd ever get by smoking it once in a while, maybe it's worth the risk. Especially if it helps you.

If I were you, I think I'd at least try it a couple more times, to see if you get the same positive reaction. If yes, then you could decide if it's worth the risk to you to continue (and talk it over with a doctor.) If no, then maybe something else led to you feeling better.

I'm glad you got to enjoy feeling well for a while!

Amy

Waterbaby,

That's amazing (and wonderful!) news about your mom. I hope her return to (mostly) health continues, and rubs off on you!

Amy

That's tough! I'm sorry. I'm going to echo Mack's Mom.

((((((Pat)))))))

I have been on it for three weeks. It is helping with pain, headache, and my energy has increased. I have had a few napless days and even went out to dinner friday night with my hubby.

That's great! I'm glad it's helpful for you. The only thing it did for me was help with my "anxiety," but after I found out I had POTS, the "anxiety" wasn't a problem any more.

Amy

Just a thought. many with MCAD suffer with intractable diarrhea. Check out the mastocytosis society website:

www.tmsforacure.org

Julie

I have wondered that, given the interstitial cystitis and junk. Who deals with that? Allergists?

Amy

That sounds really terrible! I wish I had some good advice to offer, but I don't.

Can you take a multivitamin? If you're unable to eat much, it would probably be good to make sure you're getting the vitamins you need in other ways.

I hope you feel better soon -- and find something that agrees with you!

Amy

I need one too -- but I'm across the pond, so if you find one, it probably wouldn't do me much good. Good luck, though! I hope you find someone good.

My point is that I do take a SSRI but without the beta blocker blocking the hormones from my adrenal surges I would have diarrhea all of the time. When I first got sick 11 years ago I lost about 20 lbs from this over time.

Hey, thanks kayjay! It's something to keep in mind. I would LOVE it if I could find something to use instead of the Paxil -- or just be able to take less Paxil along with something else. I don't like some of its side effects. I will have to ask about beta blockers (once I find a DOCTOR, that is.)

Amy

(((Lissy)))

Hugs to you! Thanks for sharing. I think that just getting out what's on your mind can be really helpful.