OK, So How Bad is the TTT

[JAH]

Almost raised this question in Madietodd's recent post, but didn't want to highjack her thread. Having the dreaded Tilt Table Test this week, and wasn't really apprehensive about until talked to my CFS doc who thinks I can't handle it. She thinks it will cause a major crash that will set me back for possibly months. Yikes. Plus unnecessary since I have POTs. (My pulse will go up as much as 80+ bpm upon rising). Got ordered this test by a neurologist, after having a very abnormal exam. Said yes, I have POTs, but something else. Wants me to get the POTs testing before treating me. So has anyone ever crashed hard from the TTT? Did they take you down before the 40 minute point if you were clearly symptomatic?

Thanks,

JAH

P.s. my health really bad last two months. Something besides normal CFS horribleness going on, including twice someone calling 911. Still unclear what's happening...

 

[Sushi]

JAH

If you want to chat about it I'll tell you my experience with it.

My doc told me to tell them when and if I started to feel awful and ask to stop the test. I stopped the test! He said that by that time there would be more than enough data. But some docs will keep you up till you faint!

Best,
Sushi

 

[JAH]

JAH

If you want to chat about it I'll tell you my experience with it.

My doc told me to tell them when and if I started to feel awful and ask to stop the test. I stopped the test! He said that by that time there would be more than enough data. But some docs will keep you up till you faint!

Best,
Sushi

That's what I'm afraid of, I really think its unnecessary to keep me up there. Will tell the doc, but don't know anything about him, hope he is understanding,

Thanks, J

 

[alex3619]

Do make sure the docs are well equipped. Most don't do too badly with a TTT I think, but a very few do. I had a severe reaction, but recovered in a few days. Its advisable to do this in a big hospital, or with a doc in charge - I don't know if they do this anywhere with just technicians or whatever, but that would be a bad choice.

 

[ahimsa]

... Having the dreaded Tilt Table Test this week, and wasn't really apprehensive about until talked to my CFS doc who thinks I can't handle it. She thinks it will cause a major crash that will set me back for possibly months. Yikes.

I have NMH (Neurally Mediated Hypotension), not POTS, so my reaction could be different than yours.

I have had two tilt table tests. After the first test I did "crash" pretty badly. But I got back to my former level after about a week of rest, maybe less.

After the second test I had less of a crash. The doctor had the results from my first test and he stopped the test just as soon as he saw my BP start to plummet. So it was not as bad. I rested for a few days and was back to my previous level.

My question is more why are they doing this test if you already have a diagnosis? What will they learn from it? How will the test results change your treatment plan?

Perhaps the test is being done to support a claim for disability benefits?

Oh, and I agree with Sushi that having an expert doctor who can interpret the results is very helpful. I wish my own cardiologist had known more about autonomic dysfunction. He knew enough to write the report for my disability benefits claim but he was not as up on all the details as the doctors who specialize in this area.

 

[JAH]

My question is more why are they doing this test if you already have a diagnosis? What will they learn from it? How will the test results change your treatment plan?

Perhaps the test is being done to support a claim for disability benefits?

Oh, and I agree with Sushi that having an expert doctor who can interpret the results is very helpful. I wish my own cardiologist had known more about autonomic dysfunction. He knew enough to write the report for my disability benefits claim but he was not as up on all the details as the doctors who specialize in this area.

Hi ahimsa,

Honestly I am not sure why they are doing the test, but do trust the doc who ordered it, as he is a POTs expert. I am trusting him that they will get some useful info re treatment or causation. (2 other tests besides tilt table) I am concerned that he doesn't know anything about CFS.

Thank you for your feedback.

JAH

 

[Sushi]

That's what I'm afraid of, I really think its unnecessary to keep me up there. Will tell the doc, but don't know anything about him, hope he is understanding,

Thanks, J

Just to emphasize, it is a very hard test. I felt like I was about to die when I told them to untilt me. But by then my BP was 88 over 80--so that is probably why I felt so bad! It took me a couple of hours of resting, eating and drinking before I felt OK to leave the hospital (you have to fast on both liquids and food).

Like Alex, it took about a week to recover. I could guess that for some it would take more. Just be sure that you are closely monitored and that you can stop the test when and if you need to. I'd also try to educate the doc about CFS and and your basic physical condition.

It did give a lot of good data, but I wouldn't do it again!

Best,
Sushi

 

[JAH]

Just to emphasize, it is a very hard test. I felt like I was about to die when I told them to untilt me. But by then my BP was 88 over 80--so that is probably why I felt so bad! It took me a couple of hours of resting, eating and drinking before I felt OK to leave the hospital (you have to fast on both liquids and food).

Like Alex, it took about a week to recover. I could guess that for some it would take more. Just be sure that you are closely monitored and that you can stop the test when and if you need to. I'd also try to educate the doc about CFS and and your basic physical condition.

It did give a lot of good data, but I wouldn't do it again!

Best,
Sushi

Sushi, did you find that the TTT helped you in diagnosing the cause of your POTs , or did it pinpoint a treatment? I think I might have mast cell disorder, and if the TTT helps to determine that, or other cause, it will be worth in for me.

J

 

[Sushi]

Sushi, did you find that the TTT helped you in diagnosing the cause of your POTs , or did it pinpoint a treatment? I think I might have mast cell disorder, and if the TTT helps to determine that, or other cause, it will be worth in for me.

J

Hi J,

I don't have POTS I have NMH. The TTT, if done well, can show what is happening at the moment, but, as far as I know, it doesn't point to causes. Many have found that treating viruses and infections significantly reduced symptoms of dysautonomia, but there will be other causes as well.

By identifying "what was going on" it did point to treatments, but they were treatment of symptoms, not causes. They worked but later I wanted to go after causes.

Sushi

 

[JAH]

Hi J,

I don't have POTS I have NMH. The TTT, if done well, can show what is happening at the moment, but, as far as I know, it doesn't point to causes. Many have found that treating viruses and infections significantly reduced symptoms of dysautonomia, but there will be other causes as well.

By identifying "what was going on" it did point to treatments, but they were treatment of symptoms, not causes. They worked but later I wanted to go after causes.

Sushi

Thanks so much for your feedback. Test is tomorrow - I will let you know how it goes,

JAH

 

[EMilo]

JAH, how did he test go? I have a TTT scheduled on Monday and I am panicking - especially now because today I had a bad reaction to an antihistamine and had what felt like an overdose : very shaky, short of breath, clammy, headachy, heart rate all over the place, BP feeling like it was going to bottom out, extreme thirst, tinnitus, bone chills... Just a full-body meltdown that scared me. And now I have to do a TTT in three days? They are also doing a sweat test with electrodes...

I'm so scared of becoming bed bound. I'm already housebound and can't do much at all. Can someone assuage my fears!?

 

[JAH]

JAH, how did he test go? I have a TTT scheduled on Monday and I am panicking - especially now because today I had a bad reaction to an antihistamine and had what felt like an overdose : very shaky, short of breath, clammy, headachy, heart rate all over the place, BP feeling like it was going to bottom out, extreme thirst, tinnitus, bone chills... Just a full-body meltdown that scared me. And now I have to do a TTT in three days? They are also doing a sweat test with electrodes...

I'm so scared of becoming bed bound. I'm already housebound and can't do much at all. Can someone assuage my fears!?

Hi Elizabeth,

I will try to assuage your fears. I would say the test is difficult, but not the worst test I've had. Honestly the worst part for me was having to go off all meds prior to the test. I have trouble falling asleep and staying asleep, so with just a small amount of sleep meds, I had a miserable night before. Got only a few hours of sleep, then had to get up very early for the test. I also had the sweat test, which was the most painful part, it does burn, but it does not last long. Feels like ash from a fire hitting you skin. I then had the breathing tests, and the dreaded tilt table. The woman running my testing was excellent - caring and astute. Prior to tilt table she told me I could come down at any time, they didn't want to hurt me, just get enough data. I was up there for 10 minutes, though it felt longer. I don't know if you have POTs or NMH, but I have POTs, so they only needed to leave me up there long enough to see my heart rate spike. I definitely crashed hard the next two days, but started to feel much better on day three. I hope I am making you feel better and not worse. No need to panic. As long as you have reasonably sensitive people running the test, you should be ok. They get a lot of data from this test, and I hope it is useful to you.

Best of luck and let us know how it goes.

JAH

Sorry I didn't post earlier but my health has been terrible - though not because of the TTT!

 

[EMilo]

Thank you JAH! I really appreciate your feedback. I was in full-blown panic last night (poor Sushi got an earful). I don't sleep at all. It is my worst symptom. The bad drug reaction I had yesterday was to unisom, which is what I use for sleep, so not sure what to do now. I am also concerned about not having my cup of black tea the morning of the test because going without usually gives me a crippling headache.

I'm really glad you told me what the sweat test was like and that you were only up on the table for ten minutes. I hope I'll be ok. Can you tell me what their protocol was for fasting the day of the test? No food or water for how long before the test and were you allowed to have a big salty breakfast that morning? I've left a message with the lab, but they haven't called me back and it's Friday... Also, how long before the test did you have to go off meds? My appt has kind of crept up on me and I am not as prepared as I should be! Thank you!

 

[Sushi]

Elizabeth Milo

I had to fast for 4 hours before the test--food and drink. They don't want people to puke!

Also, remember that being in "bad shape" for the test is actually to your advantage as it will highlight your autonomic problems. I scheduled my test for afternoon so that I could have breakfast. Take along food and drink for after the test.

Best,
Sushi

 

[JAH]

Thank you JAH! I really appreciate your feedback. I was in full-blown panic last night (poor Sushi got an earful). I don't sleep at all. It is my worst symptom. The bad drug reaction I had yesterday was to unisom, which is what I use for sleep, so not sure what to do now. I am also concerned about not having my cup of black tea the morning of the test because going without usually gives me a crippling headache.

I'm really glad you told me what the sweat test was like and that you were only up on the table for ten minutes. I hope I'll be ok. Can you tell me what their protocol was for fasting the day of the test? No food or water for how long before the test and were you allowed to have a big salty breakfast that morning? I've left a message with the lab, but they haven't called me back and it's Friday... Also, how long before the test did you have to go off meds? My appt has kind of crept up on me and I am not as prepared as I should be! Thank you!

I had to go off all meds fore 24 hours (still took 1/2 ambien) and supposed to go off several for two days. Even Advil, tums ok. That was tough, but the testing is so sensitive that you have to do it. The lab should give you a list of everything you can and can't take and for how long. I could only drink water before the test, but the fasting didn't bother me at all, first because it was very early in the morning, but also because I don't eat until around noon anyway. I am mostly bedridden, and don't wake up until late morning, so I could have easily fasted much longer. I know many people can't do that, I'm probably an outlier in that regard, but getting up early is much harder on me than not eating. I do have a cup of tea or coffee whenever I get up, so I was a little afraid of the headache as well. I didn't get a headache from caffeine withdrawal, but did from the TTT. Had a headache for 2 days (sorry). Definitely bring a snack water, tea with you, as sushi suggested. The test itself really wasn't as bad as I thought it might be, it was the night before, getting up early, that was the hardest for me...J

 

[EMilo]

I had to go off all meds fore 24 hours (still took 1/2 ambien) and supposed to go off several for two days. Even Advil, tums ok. That was tough, but the testing is so sensitive that you have to do it. The lab should give you a list of everything you can and can't take and for how long. I could only drink water before the test, but the fasting didn't bother me at all, first because it was very early in the morning, but also because I don't eat until around noon anyway. I am mostly bedridden, and don't wake up until late morning, so I could have easily fasted much longer. I know many people can't do that, I'm probably an outlier in that regard, but getting up early is much harder on me than not eating. I do have a cup of tea or coffee whenever I get up, so I was a little afraid of the headache as well. I didn't get a headache from caffeine withdrawal, but did from the TTT. Had a headache for 2 days (sorry). Definitely bring a snack water, tea with you, as sushi suggested. The test itself really wasn't as bad as I thought it might be, it was the night before, getting up early, that was the hardest for me...J

Thanks again! The lab didn't give me anything, unfortunately, and suddenly it was the weekend. I hope melatonin and tylenol are ok to take? I can't live without those. I'll definitely bring tea ~ great idea. I'll let you know how it goes!

 

[Sushi]

Thanks again! The lab didn't give me anything, unfortunately, and suddenly it was the weekend. I hope melatonin and tylenol are ok to take? I can't live without those. I'll definitely bring tea ~ great idea. I'll let you know how it goes!

Bring tea and food too. You will be dehydrated and need nutrition to help with recovery. They offered me juice afterwards but that was all and you don't know if they will even have that. The food and drink helped me a lot. I just sat around for an hour or so and let the food and hydration do their work. It made a big difference.

Best wishes,
Sushi

PS And Electrolytes!!

 

[JAH]

Thanks again! The lab didn't give me anything, unfortunately, and suddenly it was the weekend. I hope melatonin and tylenol are ok to take? I can't live without those. I'll definitely bring tea ~ great idea. I'll let you know how it goes!

Melatonin is OK but the lab told me no Tylenol.

Good luck, and yes to electrolytes !

J

 

[Sparrow]

Keep us posted! I'm eager to hear how it works out.