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False negative on tilt table test?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Ocean, Apr 9, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    It really is possible for symptoms not to show up in 20 minutes. My BP and pulse were erratic in the first 20 minutes, but it was at about 25 that the NMH showed up suddenly.

    Also, if you were taking your strattera, that might have given a "false negative" since it seems to be working for you.

    Sushi
     
  2. Valentijn

    Valentijn Activity Level: 3

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    I stopped the Strattera 5 days prior ... and OI was bad as usual the past several days. Though it is in the realm of possibility that low pulse pressure wasn't causing my OI symptoms, but rather that something was causing both to occur at the same time ... and that Strattera had a longer-term effect on pulse pressure but only has a short term effect on OI symptoms.

    I also might look into getting a longer tilt table test at some point. I also noticed that I went from feeling moderately crappy to pretty horrible at the very end of the test when the angle was set back to completely vertical for me to step off of it. But they'd stopped measuring at that point.
     
  3. L'engle

    L'engle moderate ME

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    This test seems like it has the potential to damage anyone who is ill enough to need this kind of testing. Systematically depriving the brain of blood and oxygen as a diagnostic measure... we sure need a set of regular blood tests readily available so that people don't have to be subjected to this.
     
    MishMash likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Guess just a blood test for this would be hard to develop as its not a case of something being abnormal with our blood but rather that we often dont have enough of it.

    I wish it became a standard procedure to offer those who undergo this test an immediate saline IV to help deal with any after effects of the test.
     
    ahimsa, L'engle and Valentijn like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, it is a really tough test! :(

    I wouldn't want to take it again--ever! But they did get a lot of helpful data.

    Sushi
     
    AFCFS likes this.
  6. AFCFS

    AFCFS Senior Member

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    I had my TTT today. It was ordered by a neurosurgeon and done in the hospital where the cardiologist has his office. In the morning had bunch of X-rays for cervical/spinal cord view to look at any hindrance to CSF flow and then two series of an MRI. So the TTT was additional testing to see real-life functioning. Neurosurgeon had also ordered a urodynamics test (later) to see how the brain is talking to bladder. I think they are talking OK, but much of what we become accustomed to and take as "normal" might show otherwise in a test, so am fine with that. Good baseline at the very least.

    For the TTT, a RN did the hookups and then the doc came in and and conducted the test. In total, it took about 2 hours. I think it was the doc's intent, but we were in conversation for nearly the entire time. Although electrocardiogram, pulse and BP, were hooked up to the computer he also used his own cuff for BP. He explained it all exceedingly well, but I am still not 100% sure of what it indicated. On the first test he seemed a bit concerned as the hr jumped and the BP dropped.

    But then, they also had an IV in, was given injection of med to get the hr up in different phases of the test. It was explained to me that the drug worked for about 4 minutes with each shot so they could control that as needed. I really did not even know when it was being administered, but they said they got the hr up to 175 bpm. My understanding of this was to check to see how the bp acts in concert with hr, but ultimately looking to see how the brain is talking to the heart.

    Besides the autonomic aspects, the doc was also doing a heart test, and that was fine. I had mentioned a CT scan of abdomen had shown tiny speck of plaque in one of the heart vessels. He said that was totally normal and then recounted that during Vietnam War, when they started to ship dead soldier back and tests had been conducted, it was shown that these 18, 19, and 20 year old kids had the same and had started with the hardening of the arteries - and that was before McDonalds.

    The cardiologist did say here was likely some inflammation in the spine/brain that was casing some of the symptoms. As we were talking about my history, he thought it could have easily been caused from previous tic bite and Rockey Mountain Spotted Fever I had several years back, but only one week doxy treatment, despite weeks of complaints (Lyme was shown negative, but test timing and method are both in question). He recommended I see a LLMD, which I was already looking into.

    He did put a different spin on Lyme, just as a possibility. He thought that it may be the case it is killed off with initial doxy treatment. But now as you have "dead" tic infection in you, the body does not know it is dead but still sees its fragmented remains as protein parts that need to be attacked by the immune system.

    This causes inflammation and over time this reaks havoc on many systems, including, spine/CSF/brain - which shows it s own dysfunction in cognition/memory/etc. - and, in turn reaks havoc with all other body systems (inflammation hits pituitary, which messes with thyroid, which messes with metabolism, which messes with liver, etc., all which mess with brain - not always in linear sense, as most of these functions are recursive in some way). Then, maybe have something that looks like CFS.

    So, I was at least pleased with his assessment and feedback. Will get feedback from neurosurgeon, and hopefully can see an LLMD soon. On a final note, I felt more chipper and alert after the test, than when I started the test. He said that was likely from having my BP raised in some concert with the hr, noting to not limit salt intake as this would have similar positive effect ton BP.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    AFCFS

    Great report. Sounds like you had a good test....and survived it well!

    Keep us updated.

    Sushi
     
    AFCFS likes this.
  8. charlie1

    charlie1

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    Hi, I'm new here. Not sure if I have POTS, M.E., although I have the documented symptoms of both since my illness started in June of this year. Poor mans TTT shows increase of >30 in first minute but usually falls slowly within 3-4 min. So is it considered POTS if the increased rate is not sustained? I rarely get above 80 bpm when walking yet standing still can be 90, a far cry from the 120 or more some of the POTS people get. But my starting hr (lying down) is usually low (often bradycardia) so perhaps that's why it doesn't get as high as some people with POTS? I also have low blood pressure which is being helped with .2 mg florinef daily.
    I will be having a TTT done in a dysautonomia clinic in January but am nervous that my heart is not up to the task due to the often low starting pulse. Just doing the poor mans TTT usually makes me feel very ill and wiped out for the rest of the day. PEM is very bad afterwards also. Do you think there is danger in having the TTT done?
    charlie1
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You'd definitely want a doc there supervising who would know how to take care of you. Some have had pretty tough experiences. Do you trust your doc's knowledge here? You might want to find out how much he intends to stress your body.

    Seems like AFCFS sailed through OK, though. It was a hard one for me and did take about a week's recovery.

    Sushi
     
  10. AFCFS

    AFCFS Senior Member

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    Welcome to PR.

    I think that as far the test goes there is much subjectivity and individualistic reactions to how one experiences it. We may have similar symptoms but they often play out very differently.

    I had the poor man's TTT done previously and just did not notice the jump in hr. And then it was picked out again by another doc. I had seen POTS before in threads here, but never thought I had. That being said, I have basically been in bed for the last several months. I am normally pretty in tune with my body, but in this case my sensitivities did not kick in, however it makes sense that the cardiologist told me that I prefer laying down because I function better when laying down - no disruption of BP and hr.

    They can and will terminate the test if you are not tolerating it well (ask them about this and let them know your concerns), but most likely will just try to encourage you through it if it is not a true and immediate threat to health that they can see. Just make sure you communicate with them as much as possible - before, and during the test. Hopefully, that will at least allay any nervousness, which is normal.
     
  11. loayachil

    loayachil

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    Thank you Ocean for asking this. (and everyone particularly Sushi for their replies)

    I was wondering about the same question, and went here to see if anyone discussed this. I was a drop hesitant to post it, as writing "I usually have difficulty standing, but not the last few weeks, and I just had a TTT and it was negative" sounds ridiculous to my own ears.

    Like many people here, my symptoms usually change. Not that I necessarily get better or worse, it just changes on what hurts and what functions. For the past few weeks, I have been getting around five hours a night, with the dreams slightly more deep, and waking up needing to breathe. (Not that I can't, but it's like I'm not hungry to breathe unless I consciensly have to signal myself to breath). This is different from the times where I get 8-10 hours of sleep, feel more tired, and struggle to stand or hold my head up. It seems that the brain is only functioning 25%, and it chooses at random times which function to work better on. (More likely the initial insult causes a secondary break to force an equalibrium, and every so often the brain breaks out of that secondary issue trying to fix the original problem, which it can't and after struggling goes back to the secondary equalibrium. This might explain the variance in symptoms, and the necessity to fix the underlying cause as well as the way the body handles it.) These days it feels as if I can fix the vision pressure of the head, then I will get better, while on the days that I struggle to stand and feel light headiness it's the base of the head and the drain (oxygen, or whatever) on the rest of the head.

    Therefore, I have the same question. Is it possible that even though the false TTT just indicates that I do not have it now, but when the status of the cfsme changes to the other phase I would have it? Or should I just assume that I dont have OI? Taking a second test now would be useless, and waiting for the functional switch is kind of not here or there.

    People mention home tests. Can anyone enlighten me on what that is, so I can know how to handle it when it comes back. Also, if/when I start feeling the drain-weight what supplements can I take? (I can't just ask a doctor saying now I have it, when the test shows that I do not).

    And one more question. I have been trying to take a spect scan for a while. Right now I'm getting five hours a night and feel somewhat better than the times where I sleep longer. Although the pressure on my eyes and vision are a lot worse. Should I push off the spect scan until it switches over and I feel that my physical head is more messed up, or should i take it now?

    (Ocean, I hope it's okay that I'm asking these questions on your thread, but I assumed that it was of the saem topic.)

    Thanks,
    Lo
     
  12. Shell

    Shell Senior Member

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    I'm due for a 24 hr ECG on Thurs. The Cardio has said he will try and dx me properly without a TTT, but my symptoms are "weird" so he couldn't promise.
    I've done two poor man's tests and both times my pulse went up by 37 bpm. from lying down to standing.
    Taking my pulse regularly now and it various considerably. Sometimes it's up in the 140s and other times it's just in the low hundreds. I get nauseas and dizzy and will black out.

    My BP belts upwards and often stays there but sometimes will go from sky high to normal in a couple of minutes. I also get a lot of arrythmias with that. I have a pulse/ox which shows my SATS are often low even when my pulse is relatively healthy. My son's BP machine records the arrythmia- which I can usally catch because of the chest pain and jaw pain that goes with them.
    I'm trying to keep a record of all this so the Prof can see what's happening in "real life".

    The NHS takes bloody months and months to do anything.

    I am pretty sure I have hyeradrenergic POTS or combo (if you take the sudden BP drops from nose bleed high to a bit low).

    I must admit to being very worried about the prospect of a TTT which won't show what it needs to.
    Good luck to you Ocean and all here going through the same obstacle course.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Well, my negative TTT had a very good outcome - referral to an excellent neurologist at the Academic Medical Center :) The referral arrived today, and it looks like I'm seeing I.N. van Schaik, who specializes in neuro-immune and neuro-muscular disease. The appointment is in 12 days :thumbsup:
     
  14. charlie1

    charlie1

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    Valentijn, Good to hear your appointment is so soon! In Canada we wait 3-8 months for referrals to specialists, sometimes longer :( I have an appointment booked with a neurologist (Dr. Kimpinski) who specializes in dysautonomia at University Hospital in London, Ontario. His secretary said I likely will have the TTT done at that time. Sure hope that before then they send me some instructions regarding what to do/not to do leading up to that day. I'm wondering if they'll tell me to go off my the .2 mg daily florinef on testing day - I'm not sure I could even make the 1 hr. drive in that case .
     
  15. Valentijn

    Valentijn Activity Level: 3

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    My waits have been very long too, until this one. Usually a couple months between sending them the referral and the date of the appointment. But it sounds like things are quite a bit different at academic universities in general, so maybe that's the difference.

    For my TTT they said to bring a friend, since people often can't drive after the test. I went off my Strattera 5 days prior to the appointment to be on the safe side, since I want to look for underlying problems, not to see how things look when I'm compensating for symptoms by taking prescription drugs. I also ate and drank very little the morning of the test, with nothing in the three hours prior to the test - though some recommend no food or water after midnight.
     
  16. AFCFS

    AFCFS Senior Member

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    "DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH" (http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/).

    This is not something to take casually or do haphazardly. It involves some risk - no one knows what may underlie your symptoms, so good to run the idea by you doc first. However, if you do decide to do it and can record it, as the girl in the video did (below), it might catch your doctor's attention with presentation. Be careful if you do decide to do; this girl seems OK for a bit and then falls hard and heavy, yanking the BP machine with her.

    YouTube: I end up on the floor after a poor man's tilt table test
     

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