1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Tilt Table Test - OI (no POTs???)

Blog entry posted by lnester7, Aug 24, 2012.

I had the TTT today. I went no food or drink after 12am. It was very simple, the bed was like a table. I lay there while they conected the heart and vital signal stuff. I also got hooked up to an IV. The Electrophysiologyst was in and out while I was upright. The first part of the test (20min) was uneventful. then they gave me hydroxy soemthing some drug under the tongue to provoke vasso dilation.

When I was up w the drug, After a few minutes I told the doctor I was feeling exactly What I feel like a crash that I needed to lay down please, he said but your vitals are normal and like in 5 seconds, nurse say "there she goes" next thing I know I was passing out, I just remember he saying "breath you are hypo ventilating" I was like dude "I am gonna just throw up on you if you don't put me down" but I couldn't even speak at that point and went unconscious.

He say I have OI but not POTs??? My HR went over 130bpm but BP was ok?!? I am confused about what POTs is then.

Update: Doing very good on florinef Up dose to .1mg today. I am not sleeping even with meds but got my period, sometimes I do that before I start, Will monitor it. All other symptoms well. Today little burning on head, but after the crash I guess is normal.

I have been off complete no lactose for 5 days now, had half a cup of hot cocoa and had IBS right after, so no more lactose for me.

Progress is in the air.
  1. lnester7
    Tania Happy for you, is florinef affecting your sleep? I haven't figure what is wrong but my sleep has gotten really bad.
  2. taniaaust1
    Inester... I think Im still getting improvement from my last Florinef increase too (I increased mine about 4-5 weeks ago to .1mg but I didnt realise any symptoms changing (except what was appearing on monitor wasnt so erratic) but in past 5 days I have realised I are able to do a little more.. so are adding an extra 3 hrs of physical on feet activity (just housework) into my week. Fingers crossed this is going to work out.
  3. taniaaust1
    maybe with being given that drug they expected the heart to go up higher in that case, then those who arent drug provoked??? Ive not a clue but heart rate of 130 would usually be a POTS diagnoses, POTS is diagnosed according to what the heart does and not anything to do with what the BP is doing.

    Im glad to hear you are doing well on Florinef and able to have tried it even without a POTS diagnoses.

    Hi triffid. As sushi said you TTT isnt just advised for those who pass out (only a small amount of people who show up issues with it do pass out). TTT should be done if one has Orthostatic intollerance symptoms to try to find out why.
  4. Sushi
    Hi triffid, You don't need to be one who actually passes out to get good info from a TTT. I don't pass out but get what they refer to near syncope. But the TTT showed up huge abnormalities in my autonomic nervous system. I am not sure what your symptoms might indicate or whether a TTT would give good data for you, but you don't have to be a "fainter," to get valuable diagnostic info. My insurance covered it completely. But, all that said, it is a hard test and not one you would want to take unless it was really needed.
  5. lnester7
    I think that is a Myth, I don't Pass out much because I know how to avoid!! I only felt terrible when standing or sitting up for long periods of time (mall , supermarket..). Doctor told me in the test that I knew exactly how to handle myself because even before the HR went up and BP down, I asked him to put me down that I felt terrible, So he said I had adapted well to avoid passing out. To keep doing what I have been doing. So I think A lot of people have OI here, just that we learn to manage. The best and cheaper way to know is to wear heart rate monitor, that is how I knew something was wrong with me.

    Sushi: I am impressively good!! I even went for a bike ride. (I got my period, I do well while on it)
  6. triffid113
    I can't afford a tilt table test but it sounds like it would not diagnose anything for me since I never pass out except for due to anemia. But I am dizzy anytime I move my head, and I think I always have been but never knew it - just knew I did not like to move my head, until in my 40's. So like walking down the sidewalk is ok, but walking in a hallway requires me to hold a wall or else I keep knocking into a wall as I walk, and bending over is never ok. Not that I don't do it, but I hate it so much that I avoid it whenever possible. I don't think SAMe helps it but I do know my allergies destroy my methylation...starting with spring allergies my methylation has been destroyed despite taking the same suppements and it has not recovered all summer and now I am in fall allergy season. I figure it is due to allergies using up zinc at a ferocious rate and thus no zinc for methionine synthase which it needs. But taking 75mg zinc a day has not really brought my methylation up to par, although it may be holding the line. So anyway sounds like a tilt test is not worthwhie unless you pass out from orthostatic changes?
  7. Sushi
    I hope you are recovering from the TTT--they can sure be a rough ride! Wish the doctor had experienced what you did so that he could have more empathy when dealing with patients.
  8. lnester7
    This is a new Dr a elelctrophysiologyst in VA. Now that u mentioned it, he said my BP was 0 when I passed out but HR didn't stopped?!? I don't know why Dr talk to you while you are sedated or after you pass out! like you will remember.
    M: I am the opposite, when I go to the Dr, Is when my signals are the best :(
  9. warriorseekspeace
    i would be confused too, about hr going to 130, and them not saying pots. of course, i don't have much faith in doctors anymore. also this was not a doctor, right? was this in florida? maybe you could. tell me in a private message who the doctor is. Also, if you passed out, then it seems BP MUST have dropped at some point. ??
    merylg likes this.
  10. Marg
    I did not faint but felt a bit strange, my bp was high. I had a saline shot and it went to normal..amazing. Salt and potassium have to be in balance and it wrong to say no salt. It should be sea sal though. I can feel it when it is high, it always goes up in any doctor's office and is fine at home so I always take a log. I have the need to run away from them LOL
    merylg likes this.