Should I Go Off My Meds For My Second Tilt Table Test?

[Singout]

I've got a second TTT in two weeks. The first one--over a year ago--was "normal," with an unsympathetic cardio. (I've had M.E. since 2008, and it got much worse in 2013 with what I believe to be neurally mediated hypotension.)

He saw regular dips in my BP, and referred me to a BP specialist. He was a *bit* more sympathetic, and put me on Florinef first, which raised my BP, but didn't help my symptoms. Then he put me on Midodrine, after I pressured him, which helped a bit more. He refused to try anything else because my BP is now normalized.

I'm getting a second TTT on July 10, and am wondering if I should go off my meds/salt water so I'll be back to ground zero. That's what David Bell says in his instructions for the "Poor Man's TTT"--he says go off them 2 weeks ahead.

What do others think? Do I really need to go off Midodrine 2 weeks ahead--it seems like it's fast-acting.

Thanks!

[dkd]

You should ask your doctor

[MightyMouse]

Exactly my response dkd... You really need to ask your doctor.

For my test, I was told to be off everything. It took a month to go off of florinef, and I had to be done weaning myself so that the last dose was more than 2 weeks before the testing. I was told to do by slowly tapering down the dose. I was told not to stop florinef suddenly.

Then for 24 hours before the test, I was not permitted to take midodrine, caffeine, and a few of my other meds that I cant recall now b/c it was 15 years ago. As I recall, the only thing I was allowed to take on the day of the test was water, and nexium (may have been prilosec, nexium's predecessor)...no food, no other drink than water the morning of the test, nothing to eat after midnight. But...that was my doctor's instructions...

I can tell you that typically, most TTT's are done w/ no meds, but again, depending on other things going on with your body, that might not be safe for you, which is why I would strongly encourage you to talk to the doctor--or if they gave you paperwork about your testing, read it carefully, as it may give you specific instructions.

Nina

[Singout]

OK, I'll try--this is a specialist I've never seen, so don't know if he'll be contactable or not. My GP is great, but doesn't know much about dysautonomia (and isn't the person who referred me for this test).

[gjensen]

Talk to your doctor, but they usually want you off florinef and midodrine for the TTT.

[Singout]

Aaaand...the doctor is on holiday till next week. I guess I'll try the doctor who prescribed them, but I think he'll be pretty hostile at the idea of me getting a second test. I've got an appt with my GP tomorrow, but I think this is out of her depth.

[Katybug]

Is there another doctor in practice with the one who is doing the tilt test that could talk to you about this question? For example, my cardiologist sent me for the ttt, but there are at least 3 others in her practice that I would be comfortable asking to speak with for a question like this.

[Singout]

Well, I'll start with cranky previous doctor first (he's in the same medical system but a different hospital) and I've got an appt w my GP. I already called the main intake for the cardio center where I'm doing the test, and they said they couldn't help me, but maybe I'll try again if I'm stuck and ask them to refer me to a doc. Thanks!

[POTLUCK]

I was still on Propranolol when I was given a tilt test initially and it did not show POTS. At the time I did not know anything about POTS and did not believe the Cardiologist who felt I had it and sent me to the clinic for testing. It was not something anyone had heard of. Thus I was not surprised when the TTT was negative. Later, when the idea of POTS was presented again they took me off the Propranolol, actually for a period of time for the body to become used to being off it, and my tilt table test very clearly showed POTS with a large difference beyond 30 in HR lying flat verses tilted. Thus a clearly positive tilt test.