need help with TTT

[friday]

HI. I haven't been here for a while becasue i've been feeling too lousy to work on the computer too much lately.

Anyway, I finally got the TTT I was waiting for. I don't know about the whole way it was taken though and have some questions.

I've taken a poor man's tilt at my CFS doctors and at home with a blood pressure monitor several times. My BPM always goes up 20 to 30 and my blood pressure usually drops. A lot of times it drops under normal.

Anyway, During this TTT I didn't faint. I didn't have the symptoms I usually have at home or in the office. Although I didn't feel that good it wasn't too upsetting.

The thing is my CFS doc wasn't available for me to aks about the test before i went and I had to ask the cariologist who took the test if i should take my Beta blocker. They said yes. Which confused me because I thought the idea was to see what my normal reaction would be. And they also gave me Saline solution during the whole hour. I had read that some patients get given saline afterwards to help the symptoms go away after the test. So wouldn't that change the effect the test had on me during?

Anyway, I asked the tech if she could tell me something and she did say that the heart rate didn't go above 110. However that means it did rise at least 20bpm and that's with the Beta Blocker. Also she didn't tell me the BP she just said it didnt change much. The thing is they were looking for another disease. They really were only looking to see if i fainted.

So now i don't know what to think. Was this a waist of time? Will I be able to get the results and figure out from that if it's POTS, or will the additions of these other things interfere.

Anyhelp appreciated.

Sorry about the typing. I get sick when i look at the screen too long and can't go back to proofread now.

Sue

[Guest tearose]

Hi sue, I'm sorry you aren't feeling well. I too have problems typing on the computer at times. In fact I typed my loggin twice just now before I got it right!! Signs of how the day is going to go....anyway,

I am not sure about the effect of the meds on the TTT but logic seems to say they would make your symptoms less. You said they made you use saline and meds to look for another disease? Have them specifically write that in your chart so nobody ever questions the results. You surely don't need to hear "your test was normal" and want to fight a future battle over this!

If you confirm that meds should not have been used, be mentally prepared to insist that this test not be considered accurate if they really intend to use it to dx the pots they better redo the test!

I hope it does not become an issue for you, continue to get strong, best regards, tearose

[yogini]

Friday,

Is your doctor a POTS specialist? The beta blockers and saline would have affected your test. For my first TTT, I was asked to stop all meds for several days before taking the test. I had vomiting and fainting within 10 min and was diagnosed with POTS. I got saline after the test because I was so ill, but not during.

Since then, I have had other TTTs on the meds, during which I did fine even though I am not exactly fine on a day to day basis. It never made sense to me, but my doctors wanted to see how I was doing on the meds. I would recommend talking to your doctor about re-taking the TTT without meds, if you can. It can be tricky stopping the meds, though, because you may have to reduce them gradually over several days/weeks. Your doctor will tell you how to do this. I know it can be dangerous to stop beta blockers abruptly, which is why your doctor probably told you to take it on the day of the test.

-Rita

[nantynannie]

Hi Friday,

I also had saline during my TTT. My test was very abnormal, so I did not worry about it, but it can definately interfere with results. Certainly the meds interfered.

I was wondering what other disease they are looking for? And have you had a TTT without the meds?

The other thing is that if they put you on beta blockers, then they must have known that SOMETHING was wrong. Maybe they already diagnosed POTS and wanted to see how the meds are helping?

One thing is for certain like the other member mentioned, you do not want to have to deal with that "normal" test because other docs will try to blow you off if you are normal. Make sure to request that the doctor's report indicates the reason for the test and that you were on saline and beta blockers.

I hope you are able to speak with your doc soon,

Ann

[Guest Mary from OH]

It doesn't sound like you had a normally administered TTT. Usually adrenaline is administered during a TTT, not saline. Were you hooked up to a continuous monitor BP and EKG? How long did you lie flat? How long were you tilted upright? How long did you lie flat again?

Ask for a printout of your study. It will tell you all your vitals... Good luck and if you didn't get a "real" TTT, I would suggest getting one. Usually they are administered by an electrophysiologist (a cardiologist who specialized in electrophysiology).

[MightyMouse]

Friday,

An IV line is typical during a TTT, however, the first part of the test should have NO meds or IV fluids if they are testing for POTS. As noted above by others, it's typical for patients to be required to stop all cardio-active meds for days to weeks prior. For me, that meant no florinef for 14 days, no caffiene for 48 hours, no proamatine or beta blockers the day of the test. I was only permitted to take Nexium the morning of the test. They usually only administer a drug in your IV to accelerate your heart rate if you don't have symptoms in the first 10 to 20 minutes of testing--they do so in order to mimic daily body stresses. Certainly, saline should NOT be running into your IV line during the test as that would skew the results (by bulking up your fluid volume/blood volume). Be sure to document your concerns regarding the testing and consider sending a letter to the doctor who ordered the testing regarding the abnormalities that occured during your test.

Nina

[goldicedance]

Actually, fellow TTTers, I had saline during my first TTT. It was given at the end of the test and following the administration, another TTT was given to see whether and how my system responded to the addition of fluids to bulk up the volume.

[friday]

Thanks for all of the replies.

Actually the confusion of how I got the test done was probably because I have to deal with so many doctors that aren't working together.

The test was for one hour tilted upright. They took my BP and heart rate during, and they did give me and injection and then tilt me up again for a half hour. It really got my heart rate going because I could feel it pounding away in my chest. I asked them about it but they said it was okay and it would go away afterwards which it did.

The doctor that I'm seeing for CFS did not order the test. He was satisfied with the results of the blood pressure and heart rate that I got at home and he also did in the office. He didn't officially diagnose me with POTS, but he's been treating me for POTS symptoms because of this. He does know a lot more about POTS than other doctors, and says if I don't feel better from what I'm trying now he knows a good POTS specialist he can send me to. The thing is I have to pay for this out of my pocket. I can't really afford this because I'm living on practically nothing right now, so I've been trying to work with the doctors that my plan covers, but none of the doctors my insurance will pay for knows anything about POTS.

So, at the same time I am working with my GP who doesn't really know anything about POTS and CFS but is trying to treat me based on my problems.I have a fast heart rate, so he sent me to a cardiologist. Actually first I saw a nuerologist who then sent me to a cardiologist. Then the cardiologist sent me for the TTT. Based on his knowlege. I talked to him about POTS and he seemed like he knew about it, but I guess he was just looking for this other disease and didn't really care what I was looking for. The same thing happened with the nuerologist, all he was looking for was MS.

Anyway, I've tried to get my regular GP to get in touch with my CFS specialist but so far they haven't. The thing is the CFS specialist is well known, and some doctors there know his name and say he's the one to go to, yet they haven't taken the time to get in touch with him. I've even given them his cell phone number. I'm getting fed up with it.

So I am being treated for POTS already from the CFS doc, it's just that I don't have the money to see him all of the time and was hoping the TTT might be of some value is, because when I tell the other doctors that I'm working with about POTS they want some rock solid evidence that they approve of and I thought this might help.

Sorry if it's confusing but that's how it is working with these people. Nobody talks to each other and nobody really thinks anything is that serious because it's not life threatening.

I guess the best thing to do is to go back to the CFS specialist and tell him about what happened with the TTT. He is the best one to go to with this. I'll also have to ask him if I have a diagnosis of POTS since I'm being treated for it. Then at least I could be certain of what I have. I just wish my insurance would pay for it. I think I have to go back to my regular GP and tell him he's got to get in touch with the CFS specialist and work with him or I have to get another GP.

Anyway, sorry if this post was rambling but that's what happens when you're trying to deal wtih all of this and you have brain fog.

Thanks for all the help.

Sue