HopeSprings

Hmm, my echo and my echo-stress tests were normal, so I am likely not deconditioned then? I have been thinking about taking whatever measure they use to define deconditioning, taking it to my cardiologist, and asking to be tested for it. I'd like this cleared up once and for all. If they can show me this is the reason for my problems, then I'd ask for a referral to cardiac rehab.

I think if they're going to make a direct link between deconditioning and POTS or CFS, they need to define what that means. The only way to do that is to develop some measure or test that healthy people will pass and "deconditioned" people will fail. There has to be some standard that is agreed upon. X=deconditioning. Don't you think? I'm not saying deconditioning doesn't play a role (I have no idea), but what exactly does it mean?

Is there a test for it? How is it diagnosed?

Glad you're feeling better!

I can't take credit for this - I never suggested e-mailing anyone, but I don't disagree...

:o Wow - I can't believe they gave this guy an award.. and Wow, the Professor who wrote this article did an amazing job discrediting him. Thanks for sharing this - it's really interesting.

Ha! How funny you both should mention Dr. Grubb! - It was HIS article on POTS that I gave to my attorney.

I use Lidocaine patches. Not a complete answer, but they take the edge off.

Alex- I guess the only way to know if it's the medication or withdrawal is to continue with your plan of slowly get off, give yourself at least several months after that, and see if things start to clear up. It's really hard to figure out what caused what. I've been over it 100 times myself and just seem to go in circles. For me, many new symptoms came years after the benzos, so I know that is not the complete picture. Please keep us posted on how things are going.

Hmm. Were you having symptoms before the Ativan and bisoprolol? If yes and you tested negative for POTS while on those meds, is it possible the medication was keeping your heartrate under control during that poor man's tilt. And then once you came off them, the symptoms came back and you had the positive tilt? If you're saying you were not symptomatic before those medications and then got sick, then yeah, I'd look at that. I was feeling weird in the head on it, cognitive and perceptual problems and was feeling a little crazy. It just wasn't right, I needed to get off. In fairness, I had some dizzy stuff going on before I ever touched a drug, but the Klonopin definitely caused a bunch of new problems. **always taper off a benzodiazepine**

Yes, I initially became ill after a cold turkey withdrawal from Klonopin. Actually, I started feeling weird while on it, which is why I wanted off. This was 15 years ago when I first got sick - so I can't say for sure if I had POTS then because I wasn't tested for it until years later... But probably so. All I know is during and after that drug, I experienced symptoms I never had before and they never went away. It could be a coincidence, but if you look at benzodiazepine protracted withdrawal syndrome you'll find that the symptoms look like a neurologic illness. Why? What are you thinking?

Yes and not just Doctors. When I met with my SSDI attorney we were talking about submitting articles about POTS to educate the judge and she said she usually pulls articles from Mayo. I kind of chuckled and said, "NO, don't do that." She was like, really? I told her I would find her some good articles. And what Kitt said about CFS.. I remember reading about this in Osler's Web. According to that book, they treated CFS patients very poorly in the 1980's. Sad to hear the same might be true today with all that is now known about the illness. Even the FDA has recently said it's a serious and life threatening illness.

No, it'll be a while. We just filed the appeal last week. The attorney said not to expect to a hearing date until at least a year from now.

I'm sorry, Dani. As if there wasn't enough to deal with already. I hope you will feel better emotionally and I hope they can do something to help your eye. ((((warm hugs))))

You still don't have a hearing date, Dani?

Totally agree, Jangle. It's so insulting to be this ill and then have a major medical institution questioning your sanity (even a little bit). I really wish they'd stop, but what can we do?

Sorry, I know how disappointing it is. I was denied twice too. I hired an attorney. I can't go through this anymore and it's worth the 20% to not have to deal with it. She told me to expect a hearing in about a year. A YEAR. It's already almost a year since I initially applied... so it'll be at least a two year process for me. The wait time might depend on what state you live in. You might consider an attorney - I think they know the ins and outs of the system better than we do and will be able to present the case better than we can.

Corina - I feel drunk when I'm walking too. It's an awful feeling. That's amazing the Octreotide got you (mostly) out of a wheelchair. I think I would be scared to have an injection because then you're stuck with side effects (if there are any) for weeks until the medicine wears off. Then again if it worked- well, that would be good!

Rachel & Corina - can I ask what symptoms cause you to need the use of a wheelchair? Is it tachycardia or weakness or....? What form of dysautonomia do you have, Rachel? I know we all have different levels of disability, but I didn't realize some us were in wheelchairs. Hope you find a good one that works for you!

Yes! I feel like I'm sick all the time. I have two little ones too though, so maybe that's why. The worst thing is that it makes the POTS symptoms so much worse, so it's a double whammy!

Words we all long to hear. I hope you can find a Dr. familiar with POTS - that person should know all about pooling.

Hoping everything goes well and as Yogini said, maybe there will be a silver lining. (((HUGS)))

My guess is it would be an ENG. Here's a description of various vestibular tests: http://vestibular.org/understanding-vestibular-disorder/diagnosis Hope you get answers and let us know what happens.

There are lots of different types of vestibular tests. Did she specifiy which one? "Vestibular assessment" probably means the Dr. is sending you to a neuro-otologist or a testing facility that will run different types of dizziness/inner ear tests.

Wow, I haven't heard too many people talk about this one. YES. This was one of my first symptoms when the autonomic onslaught began. It was incredibly frightening. It happened every night for the first few weeks and then lessened over time, with fewer and fewer episodes over about the next year, and then slowly went away for good (thank God). I hope it goes away for you too. I have pooling in my legs/feet as well. One thing to possibly look into is neuropathy which can cause problems with blood vessels constricting. Have you had a tilt test yet?