Going Off Rx For Specialty Evaluation

[Schorobi]

I know that many of you have been to Mayo, Vanderbilt, etc. I am going to Mayo in 2 weeks, but am actually doing quite well on dr Levine's protocol (month 4) and on florinef, high salt diet and clonidine. Of course, evaluation at any of these places is best done off all meds. Did all of you go off all meds before going and if so how did it go and what advice do you have? Thanks

[McBlonde]

Wow... that's a hard decision to make. Doing so well for 4 months under your present protocol....... for the unknown. Tough call. Best to you!!

[janiedelite]

Mayo wouldn't do testing on me unless I'd been off all meds that affected my nervous system (even benadryl) or cardiovascular system. I had horrible vomiting and headache the night prior to testing and the only thing I was allowed to take was tylenol. Can you call the doctor's office you'll be working with at Mayo and ask their advice?

[Chaos]

When I went to Mayo, the paperwork I got said to stay on all my meds. Then the doc was saying..."well we can do the testing anyway but it may not be as accurate." So they did the testing on my meds and it still gave me the same diagnosis. However, I got the impression that he was surprised I was on my meds.

I agree with Thankful to call and ask specifically what your doc will want. If you're doing well, it would be a shame to interupt that if it's not necessary. It seems a lot of people have had a problem getting back onto meds etc when they've stopped them. I've not had that issue but others on here have reported it.

It's great news that you're doing well with the treatment you've found. Way to go!

[Jillyrbean]

I went to an autonomic research facility in April 2010 and I was told to stay on all my meds as well. My referring physician didn't seem to agree with that, but I stayed on anyhow. I waited just under a year for my appointment and I was SO looking forward to being evaluated. I have a cousin with POTS and she had overwhelming success there.

I was there for three weeks, which was NOT cheap, and some of the tests were grueling, but if it was going to help me get my life back, I was up for anything!

Admittedly, at the time, I was obese in part due to inactivity as a result of POTS. At my final appointment where I was to receive my results and recommendations, the doctor told me that I needed to loose weight (no kidding!) and that my test were borderline for POTS but he felt that it was only because my body was deconditioned. He said I have a labile autonomic nervous system that would correct itself if I went on a diet & exercise program. Needless to say, I was frustrated, hurt, and felt incredibly hopeless. I wondered if I had dysautonomia at all!

Back home, my doc (an electrophysiologist) reviewed my tests, told me it proved what he had been telling me for the past 6 years, and he apologized to me for the docs bias towards me due to my weight.

I have now lost 75 pounds but cutting out processed foods and just being aware of what I put in my body. And surprise, I still have POTS! I would be to hear what " he who shall not be named" would say now!

Anyway, my point is that if you go through all of that testing on your meds like I did, it's not a true portrayal of what is going on with your body. Getting into a research facility is something so many of us hope for, I would hate to see someone else take all of that time, spend all of that money, and wind up in the same place you started! If your current protocol works for you now, I would think it would work again if you decided to discontinue it while being evaluated. Just my two cents!

I wish you the best of luck!