Should I go off my OI meds before my second Tilt Table Test?

[Singout]

Hi, everyone,

I'm going for my second TTT on July 10. The one I did in Feb 2014 (with a very skeptical and nasty cardio) said I was OK, but a minor BP blip had me referred to a BP specialist who put me on Florinef (which raised my BP but didn't help my symptoms) and Midodrine (which helped my symptoms somewhat). He told me last week he won't consider any more info or treatments b/c my BP is "normal."

I asked my environmental doctor (the closest thing I have to an ME specialist) to refer me to a doc in the next city that specializes a bit more in dysautonomia, but the waiting list is so long she scheduled me instead with another one here.

So, I'm thinking I should go off the Florinef (0.1/day) and the Midodrine (2.5 mg 3x/day) as well as the salt water, but I'm not sure how early I should start. The David Bell home test protocol says 2 weeks. Obviously I want to be as untreated as possible for the test, but also not go any longer being dizzy and tired than is necessary.

I'd ask the doctor, but he's on vacation till next week.

Any ideas would be greatly appreciated!

 

[Never Give Up]

Call and ask the new doctor's office. Going off of these kinds of meds should follow a medical protocol as it can be life threatening to do so.

 

[Singout]

He's on vacation till next week. I don't think my GP will know much. I guess I can call and ask the unhelpful doctor who put me on them, but he was really contemptuous of me last week for wanting to know if anything would help further. I'm so desperate I tried calling Johns Hopkins even though I've never been there and am in a different country...

 

[Never Give Up]

He's on vacation till next week. I don't think my GP will know much. I guess I can call and ask the unhelpful doctor who put me on them, but he was really contemptuous of me last week for wanting to know if anything would help further. I'm so desperate I tried calling Johns Hopkins even though I've never been there and am in a different country...

The new doc's MA or nurse may still be in and know how to advise you. It might work out better for your health if you were to make one visit for an initial consultation and see how the doctor wants to proceed.

 

[Sushi]

I'm going for my second TTT on July 10.

Are you going to a hospital, clinic or the doc's office for your TTT? I ask, because I had one at a hospital that did them regularly and could give general guidelines--they would perhaps know what your doctor usually advises.

 

[Singout]

Thanks, @Sushi--I called the hospital department already (after the doc/nurse's phone said they're away) and they couldn't tell me. @Never Give Up --I didn't specifically ask for a new test, I just wanted to talk to a doc who knows more--but what I got booked for was a new test. Can't talk more to them till next week. If my first test had been positive (i.e. saying I have a problem) I'd be much less inclined to try again.
I'm going to call my previous crabby cardio early tomorrow and see my GP tomorrow. I'm on the lowest doses of both of them, and didn't have side effects, so I think coming off somewhat slowly shouldn't be too risky.