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Please help: Will tilt table testing cause bad PEM/crash?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Ocean, Jan 31, 2012.

  1. Ocean

    Ocean Senior Member

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    Hi everyone, I have been needing this test for a long time now and am finally getting around to planning to get it. I am usually very strict about pacing, but in this case I just don't know what to expect from tilt table testing so I don't know how to best plan for this appointment, when to make it for, how much recovery time to give myself.

    Normally just going out to the doctor nearby will require days of rest on both sides for me to be sure I don't crash from it. And I generally like to have an appointment no more than 1 every week, although I prefer every 2 weeks or more. The tilt table test will be further away from home than most of my usual doctors, although I will lay down in the car there and back. But since I'll be upright I'm assuming for much of the test, and I usually spend almost all my time laying down, I wonder if this will be likely to trigger a crash.

    I'm just wondering how others have been affected by this test and what I might be able to expect. Of coure I'm keeping in mind of course we are all different and at different levels of functioning so I know your experience might not be exactly what mine might be, but I thin it will really help me to know how others have done with this.

    Thanks for any input you can give. I had a test scheduled but I am thinking to change it and leave a lot more room on both sides of the appointment for rest and recovery if needed.

    ETA: I spoke with a nurse at the testing clinic and learned more about the procedure. It doesn't sound very comfortable. I'm thinking I will need more rest than I've allowed myself currently, so I will probably reschedule the test.

    Also I'm confused about my symptom of being short of breath with just the slightest incline (small slope, stairs, etc.) and that it isn't looked at in this test, according to the nurse I spoke with, since I thought that was a POTS or NMH symptom? That is one of my worst symptoms because it makes moving very difficult, just one or two stairs and my heart is racing and I'm fighting for breath. Is there some other test that looks at this issue?
     
  2. alex3619

    alex3619 Senior Member

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    Hi ocean, I can only speak from my own experience, and I have only had this test once. The effect of travelling is normal. The test itself did crash my health but only for the day. I had a very severe reaction though. My heart stopped during the test. This is because I have NMH and not POTS. Normally my body compensates with high blood pressure, but during the test my blood pressure crashed to zero. My cardiologist revived me before the crash cart arrived - do make sure that whoever is doing the test is aware of this possibility, and equipped to deal with it. While most doing this test should know not to use adrenaline to kick-start the heart, do make sure that they are aware of this. This test can confirm NMH or POTS in most cases, but its problematic. I would not do it in a minor suburban clinic.

    I should add that the kind of severe reaction I had is not common, though not unknown to experienced cardiologists.

    Bye, Alex
     
  3. Ocean

    Ocean Senior Member

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    Wow that's really scary Alex. I'm glad you're okay. What did they do to start it back up? What is the difference in symptoms for POTS vs NMH?
     
  4. Persimmon

    Persimmon Senior Member

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    Postural orthostatic tachycardia is when you experience an abnormal increase in heart rate upon standing; neurally mediated hypotension is when your blood pressure temporarily drops upon standing (causing you to feel faint / start to black out).

    My experience was far less spectacular than Alex's. I felt knocked around afterwards, but not enough to cause a big set-back. The cardiologist who did mine was experienced with the test, and pretty careful, which presumably helped. I'd heed Alex's advice to have it done in a hospital setting (as mine was) rather than a suburban clinic.
     
  5. alex3619

    alex3619 Senior Member

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    As Persimmon says, tachycardia is a big feature of POTS. However, in NMH I get very low blood pressure and slowed heart beat. This means the heart can just stop. Raising the legs will usually restart the heart. Gravity forces the blood back into the body. This worked in my case. I woke up with my cardiologist and assistent holding my legs up in the air.

    In most cases of NMH if the patient passes out and falls flat they are OK. It is only if they are propped up somehow that there is real risk.

    Bye, Alex
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Wow, scary! I never would have thought a "simple" test like that could have such huge ramifications!

    GG

    PS I know my symptoms are not as bad as many on this forum, but all I can think is wow!
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sounds like you want to take the 2 day exercise test? Offered at Pacific Fatigue lab in California, and I think Dr. Klimas does/did it (not sure with her new environment)?

    GG
     
  8. taniaaust1

    taniaaust1 Senior Member

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    Ive experienced that it does have more ramifications if one goes unconciousness while propped up. That happened to me once, very luckily I was at the time with a friend who was then able to pick up my body and lay it down flat. Apparently it took me 3-5 minutes to regain consciousness (according to my friend.. I was out cold), so I was unconscious for a longer period then my other unconscious collapses due to standing, when I end up coming too and find myself laying on ground.

    To this day I think I would of ended up brain damaged if my friend hadnt been there at time to pick me up and move my body to place where it was flat. This episode really did knock my body around and had after effects for a while so I suppose same would happen if I had if I managed to get proper tilt table testing done.
     
  9. Ocean

    Ocean Senior Member

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    Thanks everyone for all the input. I don't pass out so I think I will be safe from that. I am definitely rescheduling. The place I am going to get it done at my doctor said was a good, well regarded place, so I think it will be okay in terms of that. I admit I'm nervous about it but now that I'm rescheduling I won't have to be nervous for a while longer.
     
  10. ahimsa

    ahimsa Senior Member

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    Ocean, there is a subset of people who HAVE NEVER FAINTED in their daily life but who DO FAINT on the tilt table test. I am one of those patients. I have had two tilt table tests (for diagnosis in 1995, for disability insurance in 2003). I fainted during both tests. Those were the only two times in my life that I have ever fainted. I first got sick in 1990.

    Patients who have never fainted often have a much harder time getting an NMH diagnosis. These patients may get all the common presyncope ("before faint") symptoms without ever actually fainting. I remember listing many of those symptoms - nausea, dizziness, increased heart rate, shortness of breath, feeling weak and needing to sit down. But for some reason my doctors never once thought of "dropping blood pressure" as a possibility during the 4-5 years before I had my first tilt table test. I think most doctors are smarter about this now (there has been so much research done on the link between ME/CFS and autonomic dysfunction!) but some doctors are still pretty clueless. Plus, some insurance companies only want to pay for a tilt table test if the patient has actually fainted.

    I hope I am not causing you any alarm. I'm not trying to worry you! I just don't think it's wise to assume that just because you've never fainted in your life that you won't faint on the tilt table test. It's better to be prepared.

    I have shared a little bit about my tilt table tests before but the short answer is that while I have had worse tests I was pretty wiped out for several days (as long as a week) after the test. The crash after the first tilt test was a bit worse because the doctor did not realize how suddenly my blood pressure would plummet (to something unmeasurable, near zero, he said). The second test was not quite as bad because the same doctor was monitoring my test. He knew about my previous test so he was prepared to quickly put the table flat if/when my body had the same reaction (it did). So, the amount of time that I "blacked out" was much shorter the second time around.

    I had both my tests done in a hospital (okay, it was a hospital in the suburbs ;)).

    I think any place that's sophisticated enough to do one of these tests is probably going to have the right equipment and expertise to revive you should it be necessary. Fortunately, my heart did not stop in either test. I think a stopped heart is a lot more rare than fainting but, as Alex said, it is a possibility that should be taken seriously.

    Some people get lots of symptoms but don't faint. The test results can abnormal even without fainting (significant rise in heart rate, significant drop in blood pressure, very low pulse pressure, or whatever other measurements they are taking).

    During the tilt test, make sure that you don't fidget or move around during the test. Talking and moving around can be enough to keep your blood pressure from dropping. The folks running the test are supposed to watch you, and stop you from moving, but I have heard that sometimes they are not vigilant enough. During my first tilt test I was moving around without even realizing it because I was so uncomfortable. They told me to stop moving and it was right after I made myself stand still (supreme act of will) that I fainted.

    The other thing that's important is to make sure they leave you tilted long enough. Ten minutes may be enough to diagnose POTS but it is not enough to diagnose NMH. I fainted after about 20 minutes on the first test and after about 30 minutes on the second test. I think the test should last at least 40 or 45 minutes.

    Okay, enough rambling. I hope that this makes sense! I did some cut/paste to move things around so I hope the end result is coherent.
     
  11. ahimsa

    ahimsa Senior Member

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    Stories like this are why I always get a little nervous when people talk about trying to do a "poor man's tilt table test" at home.

    I'm not a paranoid person who's afraid of everything--nothing like that. But I do wonder about purposefully putting stress on your autonomic system when you suspect it might be badly broken. At the very least you risk triggering a faint and a nasty fall. A situation like this (where someone passes out while propped up) would be even worse.
     
  12. Ocean

    Ocean Senior Member

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    Thank you so much for all this wonderful information. No it doesn't scare me, it's very good to know and I'm glad I now know that fainting could be a possibility. Is it always standard to have a doctor watch over the test? I wasn't sure if they told me it would be a nurse or what. I'll have to check again on that. I think not moving around will be very hard for me. I'm extremely fidgety and I get very uncomfortable easily and this test sounds profoundly more uncomfortable than just the usual situations that make me fidgety and uncomfortable. Just getting a CT scan done which is a few seconds I usually have a lot of trouble being still and they told me the title table will be 45 minutes for the first part and then somewhat shorter for the second part. I have a lot of discomfort around my ribs and have to move around a lot to accommodate it, I don't know how I'll get through it.
     
  13. ahimsa

    ahimsa Senior Member

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    As I recall, there at least one person (nurse? technician? don't know the title) who was there the whole time. Two people got the test started and one of them stayed. The doctor was not there the whole time. He was somewhere nearby, I think, but came in and out of the room.

    I'm actually not a fidgety person by nature. It was only the symptoms I was getting from the tilt test that caused me to start moving around (shuffling my feet around) without even knowing it. I guess the subconscious brain can be pretty good at knowing what to do to prevent a faint!

    My only advice is to take a couple of deep breaths to stay calm. Maybe try to think of something pleasant or soothing. Then try to be as still as possible during the test. And if the folks running the test are any good they will monitor you and stop you if you start to talk or move around. Best of luck.
     
  14. taniaaust1

    taniaaust1 Senior Member

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    I'd like to warn people while on subject of tilt tables that some chiros have them in their clinics without being at all aware that these can be dangerous to people with some issues.

    There is one in my chiros clinic. It is used as regular table to lay people on but after treatment on ones back/neck or whatever, they use the table to upright people after chiro treatment!! (I guess so people arent twisting when getting off of the table). I wasnt even thinking when I got told to just lay there while it stood me up... result was me collapsed and dizzy on the floor. I cant be brought up from a laying position to a standing position in that manner (while laying still and flat).
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    On my tilt, I was well strapped to the table so it wasn't possible to move much. There were two techs and nurses there for the whole test but the doctor was in and out. He himself had POTS and knew how hard a tilt table test was, so he had told me not to let them take me to a faint but to stop the test if I started to feel really bad.

    My test had many parts and took about an hour and a half. They did shorter and longer periods of upright tilt, but they knew that is was necessary to leave some patients up for as much as 45 minutes to get significant results. I lasted about 30 minutes before my systolic plunged and my diastolic went up. I told them to stop when I was at 88 over 82. I felt awful! and it took about a week to recover.

    One way to keep from moving etc. is to ask the techs to tell you what is going on all the time so that you are involved.

    Best wishes for this. A tip: take a recovery pack with lots of the type of food and drink that will revive you as they usually ask you to fast before the test (so you won't upchuck) and that makes the test harder.

    Best wishes,
    Sushi
     
  16. Ocean

    Ocean Senior Member

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    Thank you Sushi. What a good idea to take food and drink for afterwards. The whole things sounds like it has the potential to be stressful and draining. I will definitely plan to have no other appointments or responsibilities for quite some time after the test. When you were feeling really bad and asked them to stop, what did it feel like?
     
  17. beaverfury

    beaverfury beaverfury

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    eek!.... wouldnt anyone faint after a test like that??
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Like I might die in the next few minutes! :confused: Don't want to scare you, but do tell them to stop if you are really getting bad symptoms. I felt like a gasping fish, out of water--a bit hard to describe, but at that point my BP was 88 over 80--and that is very abnormal!

    Sushi
     
  19. alex3619

    alex3619 Senior Member

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    The duration of bad symptoms between feeling OK and passing out was only seconds for me. Maybe five seconds. Not enough time to ask them to stop.
     

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