Tests On Medication Or Off Meds

[Joann]

I have a bunch of autonomic tests coming up at Cleveland Clinic.

I met with the neurologist in January and he scheduled the tests with his associate, a cardiologist. At the time, he told me there were two schools of thought. One is the purist, you should be off all meds to get a true reading. Second, was if you have it, it will show whether you are on meds or not.

I have had a TTT test and he reviewed the results, he said they were "unusual" and although the doctor that ordered this test, while I was on my two BP meds felt this indicated POTS and possible a hyper type, this doctor said he just wasn't sure, it could even be another autonomic problem. So, he said I should try and get off the meds prior to testing. He told me the lab would call before and explain how to do this.

Long story short, I had to contact cardiologist at CC, to find out how to wean off meds, and I admit this thought has me freaking out. I was told he does not want me off the meds. He said if you are still symptomatic while on meds, it will show up on tests.

At first I was sooo relieved. But now I wonder, will this mess up testing. I want answers so bad. I really don't know how I will be able to function off the meds, since I don't do all that great while on them! LOL. But I don't want to go there and mess up the test either. One of my meds is a beta blocker and I know they are very difficult to go off. If i a even late for my dose my body gets messed up

What are your experiences or thoughts on this?

[bustersacc11]

I just discussed this issue for my upcoming appt at the Mayo in May. Recommended that I come off all blood pressure meds 48 hours before testing. One of my meds I will need to ween off slowly. Those two weeks in May should be very interesting for me.

I have had testing off meds and on meds. I see both positions. I guess it would be more patient specific whether it matters if they are on meds or not. For me, the meds I take are treating my high blood pressure, very little with symptoms, and definitely not treating the underlying cause. If I am going to travel and spend the time and money for hopefully an extensive evaluation I want them to see me not just on a bad days while on meds but totally at my worst. Maybe something new will show or getting worse that wouldn't have showed up because I was on meds. Who knows.

My frustration with this whole dysautonomia is when it comes to my health issues we have no tests set up on a yearly basis to monitor the progression of a disease that we don't even know I have. I am getting worse and I know it and in a way I hope something shows up but it has been going on for so long if they find something it is probably so rare and not treatable do I really want to know. I revisit my case with these centers with little hope of a cause; rather, if there is an opportunity to try a new med that could possibly improve the quality of my life. Good luck at the CC. Hope you have a great experience and get some answers.

[Joann]

My other worry on getting off meds. Is I honestly question how I will be able to get there off my meds. I have been on them since I could not even sit up without my bp going up to 180/116. So to travel by car hours, somehow walk into a hotel and make it to the room, then somehow get up the next morning and get back to car, to the clinic. I don't know if I would make it, I might end up missing appt. because I am unable to travel?

I know some people manage this, but how?

[bustersacc11]

Long story short, I had to contact cardiologist at CC, to find out how to wean off meds, and I admit this thought has me freaking out. I was told he does not want me off the meds. He said if you are still symptomatic while on meds, it will show up on tests.

If your BP are that high off meds, I agree and don't think it is safe to have numbers that high 180/110's for you to travel off meds.

If you want to be off meds for your testing maybe get to Cleveland a couple days earlier and ween off in Cleveland versus being off meds and then traveling.

to to travel by car hours, somehow walk into a hotel and make it to the room, then somehow get up the next morning and get back to car, to the clinic. I don't know if I would make it, I might end up missing appt. because I am unable to travel?

I know some people manage this, but how?

Stay as close to the CC as possible, or if a little away make sure shuttle service is available to the front door of CC. See if CC concierge service has wheelchair services to bring you from appt to appt. CC is pretty big and walking can be tiring. Rooms at your hotel maybe ask for a first floor room that is handicap accessible to make things easier for you. Make sure you get CC patient rate and they should have wheelchairs if you need help getting from your car to your room.

For me, I am going to Rochester that Sunday AM. My first test is on Tues. So, I will have a good 48 hours of the meds being out of my system. I am going to do those things for myself that I outlined above, if needed. I am in the same boat as you. My BP are pretty high off meds and I don't need an event mid-air.

I cannot speak to your question of how I managed my situation with traveling and coming off meds from past experience. I can share what I am going to try to do with getting to the Mayo and being off meds prior to testing and how I will handle my situaion during the week.

[Joann]

Thanks for the advice. I may call the clinic when the appointment date is closer and ask again. My insurance doesn't want to approve the ttt test, the doctors had to submit info for approval, so I guess I will wait until I find out about that. Then I will call and see if they have advice on going off meds. If I feel like I have this past week, it probably won't matter if I am on or off them. LOL.

Of course, I will probably be feeling my best when I am there, because isn't that how it goes? I wish I could have scheduled it for when I know I feel bad.

[bustersacc11]

I had the same problem with approval for TTT when I went to CC back in 2008. What made a difference for me when getting it approved was when they coded it (icd9) syncope even though I have never passed out. Had 3 TTT worked every time. If it is coded lightheadedness they see the test as experimental.

LOL! Of course, we all have our best days when seeing our doctors!

[bellgirl]

I was on my B/P med, Losartan when taking a TTT that was positive. I wasn't on a beta blocker at the time, though, but I know what you mean about getting off a beta blocker. I had a very severe reaction, physiological panic attack, when changing beta blockers, just after 3 days. They told me to take my blood pressure medication, or I could have had a stroke, so have someone with you to drive, or like buster said, be close to the clinic in the case of an emergency!

[Guest Alex]

Here is my experience:

I had 2 TTTs. The first one confirmed POTS - I was off meds for that for more than 48 hrs - my HR spiked by 50 some bpm, and I even fainted despite the fact that I never ever fainted with POTS. For the second one my dr wanted me on meds as he wanted to see whether my treatment was helping or not. That test showed no signs of POTS whatsoever.

If it were me and I were looking for some straightforward answers, I'd go off meds, but my situation is different than yours, and obviously you have to consider your drs' suggestions.

Your best bet is to call them and see what they recommend.

Good luck with your tests and appointments, and keep us posted.

Alex

[Joann]

Thanks, for all of the advice and support. I think I will wait to the April and then call again, and double check with them.

alex74alex- that is my concern with taking the tests with the meds, that it won't show what is wrong.

That's my problem, scared to go off meds but scared to go on meds. LOL

[trice125]

I had a TTT test at the Cleveland Clinic in December and was told that as long as I still have symptoms on medications it makes no difference on the test results whether you are on them or not.

[Joann]

What were your results?

[trice125]

I passed but it was abnormal because my catecholamines after being standing for 30 minutes were very high.

[boymommy3]

I have been in your boat for a while.

My doc started me on a BB right away when I started having this last relapse. She has just been doing orthostatics on me in the office and I met the criteria. She did tell me that in order to do the TTT I'd need to come off my BB.

I haven't wanted to so that because it helps soooo much!

So....I don't really buy into the theory that if you have it, you have it no matter what meds you take. Otherwise why would we take meds in the first place. AND....everyone is different. Doctors try so hard to put us all in a nice neat little box they can mindlessly prescribe medication to. They don't want to have to look at the individual and try to treat them as such because it's more work that way.

My thoughts on this are....if YOU know that you are still symptomatic on your BB then it might be just fine to do the test on them, however, if you are like me and the BB help tremendously and aren't always symptomatic then why risk getting a false negative.

I haven't had the nerve to come off my BB yet either. It's not the test that bothers me....it's the hr issues that come when I'm not on the bb.

Incidentally....my neurologist told me he wouldn't expect me to meet the hr criteria on the bb. The day I was in his office my hr only went up 12 points upon standing.

Also...in terms of doing tests on meds. I DID have a treadmill stress test on my bb. The techs at the hospital were VERY surprised that my cardiologist had me do that way. They said they always have people stop their meds for the day of or before the test. SO.....my guess was that he had me do it on my meds because I WAS still symptomatic of some things on on the bb. I passed the test with flying colors (in terms of no weird stuff showing up)....so I am not sure what that means. Would it have been different had I not been on my bb? That's the million $ question, I suppose,

The FNP who was present while I was on the treadmill said that she was surprised that they were able to get my hr up so high on the bb, which in her mind would was more indicative of POTS.

[Batik]

Could you compromise? Take just enough meds to get you there OK, but minimise them in order to affect the results less?

[Joann]

I am wondering if going off them for a short time, might actually reflect the rebound effect of going off the meds? I just don't know, but like boymommy3 I am afraid of how my body will react off the meds.

I am going to ask if I could either lower the does as Batik suggested for a couple days prior, or could just not taking the morning dose work?

Oh, and I have passed the stress test on my meds also. But I told the techs, if they had me do this on a sharp incline or with stairs, I bet I would be an epic fail!

[Libby]

I keep thinking I've replied to this thread, but nope. haha. Well, I will now.

For my TTT I went off my meds, against the recommendation of my primary and the testing center. It was worth it for me. I didn't trust either of them to understand POTS. I also didn't want to give a skeptical doc ammunition by producing a med-induced, normal test result.

It worked out in my favor. My hr initially jumped 40 bpm, and climbed up to +60 before I passed out. (Still, the cardiologist that reviewed it misdiagnosed me with IST.) My POTS neuro diagnosed me correctly, and she agreed that I was right in stopping the meds.

I looked up the half lives of my meds and calculated it out, so that I had gone 3 or 4 half lives, I think, without the drug. I did taper them initially, too. For drugs like midodrine, with a short half life, not taking it that morning might be fine. For some of the beta blockers, you're going to have to stop them at least a few days before your test to not have them influence it.

I understand what you're saying about rebound. It does happen with beta blockers, and you can end up with an even higher hr. I've read that tapering first before you stop completely will help prevent it.

I think took my stress echo on meds, but they just wanted to image my heart while it was pumping hard. I remember wishing that I had skipped at least a few doses of my beta blocker, because then it wouldn't have taken so long on the treadmill to get to the hr they wanted LOL.