Invest in ME Conference 12: First Class in Every Way
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Still Feel sick after having tilt table test on 11/29.

Discussion in 'General ME/CFS Discussion' started by element252, Dec 11, 2017.

  1. element252

    element252

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    I had a tilt table test on 11/29. Was going well during the first part, but after they gave me the sublingual nitroglycerin, my heart rate dropped into the 50's and systolic BP into the 50's at the 17 minute mark. So was positive for dysautonomia. Didn't feel well after the test, but about 2 days after the test I began to feel lightheaded, dizzy, and severe brain fog all the time. Feels like I have post concussion syndrome (only thing I can think to compare it too). I been getting headaches a lot and now when I try to drive I get really dizzy and nausea and a bad headache. So cannot currently drive and just feel horrible all the time since this TTT.

    Blood pressure has been normal the whole time and a little high other times. They want to me to consume lots of salt and water and take mididrone, although my BP isn't low. But my question is does this feeling ever go away or is it normal to feel this way after a TTT so long after? Only time I felt like this before the test, was when I tried to heavily exert myself, but now I feel lightheaded,dizzy, and foggy with headaches all the time for the past week. Just looking for answers to go back to the way I was before the test.

    The cardiologist who ordered the test said to take the midirone but my blood pressure is normal or a little high at times. I just feel horrible, dizzy, foggy and bad heavhes and nausea all the time. Regret getting this test as I didnt feel this bad before it. Also unsure where to post this on this forum as I am new here. Thanks
     
    Last edited by a moderator: Dec 11, 2017
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  2. PatJ

    PatJ Forum Support Assistant

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    A TTT can be very hard on a body so you might be experiencing PEM. If I try to stay upright too long (45 minutes for me) then I'll start to get all the usual orthostatic intolerance symptoms. If I continue to push it, then I'll get PEM. The more I overexert the more severe the PEM and the longer it will last.

    Earlier this year I moved into a new house and had to be upright longer than usual. This, plus travelling a few miles lead to PEM for five days.
     
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  3. element252

    element252

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    What is PEM? Not sure how a tilt test can cause that. Any idea how long the PEM lasts after the TTT?
     
  4. Ravn

    Ravn Senior Member

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    I've never had a TTT but I went into a week to 10 days of nasty PEM after the NASA leaning test which is probably less taxing on the body than the TTT because they don't give you any drugs during the leaning test. So if I had access to the TTT I would likely get PEM for longer - as you appear to have done. Have you mentioned it to your doctor, just in case it's some other reaction? If it's PEM, only serious rest will help.
    Some people in POTS circles say that the higher BP in a subset of people with POTS is not your typical hypertension but a sort of overreaction to orthostatic stress and I've seen other patients mention they get BP-raising drugs in that situation even though it sounds counterintuitive.
     
  5. Joh

    Joh Inactivist

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    Welcome to Phoenix Rising @element252!
    PEM stands for post-exertional malaise, the hallmark symptom of ME/CFS.
     
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  6. element252

    element252

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    Thank you, Joh

    Yeah, I was diagnosed with vasovagal dysautonomia after the TTT. Everything on the test wasnt too bad, until they used the sublingual nitroglycerin. Then I got really hot and SOB and around the 17 minute mark BP and heart rate plummeted. They put the table back down and gave me IV saline and BP and heart rate returned to normal eventually. I wasnt too bad after the first day, but then that Friday as I had the test on Weds 11/29, I began to feel really bad. Just dizzy, headaches (which I havent gotten in years actually), nausea, and a general feeling of well to put it bluntly, like someone hit me in the head with a 2x4.

    A few years ago I had a mild concussion and experienced Post-concussion Syndrome for 6-8 weeks and this kinda feels like that in terms of the dizziness, headaches and general feeling of being mentally out of it. I been getting SOB a lot too. I increased my sodium/salt and water intake as the cardiologist suggested, but I think its raising my BP. Was 139/94 last night, usually is around 110-115/70-75.

    He wants me to take mididrone, but thats for low blood pressure and I dont need it any higher. I called his office and left a message with the nurse about what I am going through. He wants me to do some exercise protocol called the Dallas Protocol. I cant do any exercising right now though, as walking across the house causes me to feel dizzy and get headaches, only laying down helps. I am also experiencing a lot of back pain today, feels like my spine hurts.

    I only experienced symptoms like this in the past when I tried to over exert myself such as trying to exercise or clean the house etc. So I would pace myself and the symptoms only happened during the attempted exertion and would go away a few hours later, but granted I stopped before I passed out or got too bad. But in general walking or doing basic things didnt make me experience PEM, just heavy exertion would. I honestly highly regret doing this test. I wish I was given a warning or something this could happen. Could it be a reaction to the nitroglycerin?
     
    Last edited by a moderator: Dec 12, 2017
  7. Rooney

    Rooney Senior Member

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    I've had the TTT and have POTS. I would lie down as much as you can, don't exercise until these symptoms calm down. That's great that walking is tolerated as leg strengthening is helpful. May take a week or two more to recover, but you will. Listen to music.

    Don't take midodrine until this passes either so you'll know how it effects you. Propranolol was the first drug we tried, then mestinon.

    Can you get to a dysautonomia specialist? Mine suggests getting sodium from food. I use dill pickles, V8 juice olives in brine. Soy sauce. I gained weight on chips.

    The raised BP could be from TTT. Go off salt to see.
     
  8. element252

    element252

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    The cardiologist place called me back. They said they have never heard of this type of reaction too a TTT before. He said call back Friday and he will have talked to the doctor by then, ugh. He said to increase my salt and water. He asked me if I am consuming 3 liters of water a day (which I am) and if I am consuming 10,000 mg of salt a day. I said I dont know honestly, because I have a hard time thinking or remembering anything lately. I said probably not, so this nurse said to increase my salt intake, and maybe see my PCP. So didnt really provide any answers. Not sure how to see a dysautonomia specialist, I thought this cardiologist my PCP sent me too was a specialist in that area. I am new to this dysautonomia thing.

    Rooney, did you feel bad like this after your TTT? And if so for how long? Gotta be honest these symptoms I am having after this test are scaring me. I cannot practically do anything. Usually I can walk and stuff fine, but now I get dizzy,headaches,SOB,and feel cognitively out of it. You say a week or two to recover, on top of the 2 weeks I have already been feeling bad? Sorry I am just out of it and my head is killing me, been taking Tylenol, but perhaps I should take Advil.
     
  9. Rooney

    Rooney Senior Member

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    Friday is ridiculous. Yes see your PCP or the ER. Just looked up SOB - shortness of breath. You need an immediate eval. Get a friend or family member involved.
     
  10. element252

    element252

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    Rooney, I thought you said to take it easy and may take a week or two to recover, but I will.
    Im confused.
    You think I need to see my PCP or go to the ER ASAP? What kind of eval, just a general one?
     
  11. Rooney

    Rooney Senior Member

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    You need blood work to check sodium/potassium levels as lack of it causes headaches, confusion and is dangerous. I wonder if you've overdone the water. https://www.mayoclinic.org/diseases-conditions/hyponatremia/symptoms-causes/syc-20373711. Or some other brain condition.
    Your headache, conf. and SOB are alarming. You keep saying you're out of it.

    Staff told you this was not TTT typical result. As you are confused, medical people should advise. Good luck.
     
    Last edited: Dec 13, 2017
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  12. element252

    element252

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    Yeah, I called again and spoke to a nurse. They seem annoyed I keep calling more than anything. They want me to increase salt and water intake and take the mididrone. I tell them my BP is higher and I been drinking lots of water but they want me to increase sodium intake too 13 grams. They think this is all part of the dysautonomia, and completely discounting I didnt feel this way before the tilt test.

    I made an appointment with my PCP. She cannot see until Friday though. Not sure what she can do.
     
  13. Dechi

    Dechi Senior Member

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    If you’re having PEM it might last a few days/weeks even. Rest, rest, rest, drink water and increase your salt as they said. Those who said they’ve never seen such a reaction, are they talking about the general public or people with ME ? I would think if they’re used to people with ME they would have seen this type of reaction before.

    I did the TTT but they didn’t give me nitro, Thank god. Get well soon.
     
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  14. HowToEscape?

    HowToEscape? Senior Member

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    Sounds like your doctor doesn’t like dealing with sick people.
     
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  15. element252

    element252

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    The doctor who ordered it is a Cardiologist. As far as any knowledge of CFS/ME, they have none. When I tell doctors in my area that an ID doctor diagnosed me with CFS, they just say "So your tired a lot?" I freaking wish that was all it was. They have no clue. A lot of doctors in my area of Hamptom Roads,VA seem to think CFS is like a symptom or a short term thing, not a real illness that has a long list of diabilatating symptoms. I been dealing with these after effects from TTT since 11/29 , so two weeks. How long does it take to recover from this for people with CFS/ME?

    I called again today and talk to the nurse, again. She is just annoyed I keep calling and said the doctor responded back through email and to take the mididrone and I need to follow the protocol or I wont feel better and whether the TTT made me worse or not doesnt matter because it was positive for dysautonomia. BS it doesnt matter, I didnt feel this way before, so why now? I am gonna tell my PCP about this and how in my follow up visit with the doctor he spent 10 minutes wit me brought up an exercise bike and gave me a printed handout about the protocol and another about POTS, but didnt explain a damn thing to me.

    I am now reading that salt/sodium and water intake is a delicate balancing act and too much or not enough of another can lead to hypernatremia or hyponatremia. I feel like I am just being tossed to the wolves here and basically having to figure it out myself. I guess I could be wiped out from the test, but I got all these mold, chemical and other sensitivites too and I wonder if thats playing any role in my ability or lack thereof of being able to heal from this test, I wish I never had. In the handout the doctor gave me, it says Tilt Table Test are not necessary but only in serious cases of syncope, which I didnt have.
     
    Last edited: Dec 14, 2017
  16. Peyt

    Peyt Senior Member

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    Hi,
    I hope you are feeling better by now,
    Just wanted to say it is possible that they want you to take Mididrone not for increasing blood pressure but because it constricts blood vessels. Nitroglycerin is a blood vessel dilator and blood vessel dilation can cause headaches for some individuals.

    But it is strange that it would last so long as the blood dilation effects should only last a day or two. Are you feeling any better?
     

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