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Post TTT: Where do I go from here? Any help out there for orthoHYPER?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by RWP (Rest without Peace), Sep 15, 2014.

  1. RWP (Rest without Peace)

    RWP (Rest without Peace)

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    Hi all,

    I just had my TTT this morning. I was frustrated that I couldn't do it later in the day because my symptoms are always worse from 11 p.m.. to 2 a.m. when I am either sitting or standing while helping my wife (disabled with severe CFS) get to sleep. Anyone know any night owl electrophysiologists???

    I didn't have any syncope or precipitous drop in BP; my Bp went up from 129/78 (baseline) to 173/97 at about 30 minutes. The diastolic did make it to 100 right before that, when the systolic was 168. It then gradually descended for the last 15 minutes. Paul, the Physician's assistant, didn't want me to do the isupril (sp?) because I wasn't even close to having syncope. According to Dr. Bell (quoting Dr. Streeten), a rise of 20 or greater in systolic= OrthoHYPER.

    So, I'm not surprised that I couldn't get a positive result at this time of day. I don't really want to do the test again because the only variable I could change (to make myself sick enough to MAYBE show up) is to force myself to stay up all night, thus risking falling! I do faint occasionally but not habitually because I know how to prevent.

    Where do I go from here? I feel like I need to research orthoHYPEr more and maybe find info online from a doctor who is specialized in this. I didn't even ask Paul what to do because it seemed that, unless I would have fainted, this aspect was irrelevant to him.

    Ahimsa reminded me that an OI specialist may not understand ME/CFS, so I don't know how far I could get.

    BTW: I wouldn't be able to travel to see this "unknown" expert, just read papers online. My normal BP readings are fairly normal when sitting and not under stress, like high 120's and low 130's over 70s-80ish. But in the Dr.'s office, or when I'm under stress at home, it will be higher, so I may need some BP med eventually. Thank you for your time.

    Also, please point out any relevant info on this site that I may not have found yet.

    Paul
     
  2. jjgirl67

    jjgirl67

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    I wish I could help you but I'm still learning. My symptoms also worsen throughout the day, I don't know why but I suspect I would have a similar result if tested early am rather than afternoon. Hopefully others with more knowledge will chime in.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    I had a TTT while in the hospital about two weeks ago and still do not know the actual results! I hope to learn them at my appt on Fri. All I was told is that is was "abnormal" and I was started on Midodrine. The entire test was only 15 min and felt very rushed like they just wanted me out to bring the next patient in (and they were already frustrated with me b/c my IV broke and they initially had to re-schedule the test for a later point which was not my fault.)

    I also did not have the Isopril (sp?) b/c my cardiologist did not want it and wanted to see what my body did naturally. I also did not want it so that was a good thing. I am just really unclear what the test showed b/c as it was happening the technicians led me to believe it was all normal but I felt dizzy and had trouble breathing the entire time. It was a confusing experience.

    Sorry, I wish I could be more helpful!
     
  4. PNR2008

    PNR2008 Senior Member

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    I got a TTT a few months ago and since I was on midodrine and electrolytes, it was normal. Yet the first two, years ago I fainted within 7-9 minutes and the third I didn't faint but it made me feel worse than when I did and that was considered abnormal. Go figure. Especially when I still land on the floor more often now than ever.

    Some results were put on the computer and others omitted, when I complained I was set up to see the head of the syncopy clinic. After he explained all the results released and otherwise, I said I wanted the results on paper, "paper?" he said. Paper, I said so I can show my results to doctors like you who can't find my results from seven years ago even at the same hospital.

    This whole business is not for the weak of heart, fainting or otherwise.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @PNR2008 Thank you for saying that and I am going to insist on getting a copy of my results on paper. They said I needed to go to med records dept of the hospital and results were not ready yet but they should be by now. I had taken Atenolol which may have altered the results too ( but was not on Midodrine yet is this was not a factor.)
     
  6. PNR2008

    PNR2008 Senior Member

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    @Gingergrrl My next move on the POTS PROJECT is to get a skin biopsy to prove small fiber neuropathy which is pretty much a sure thing but I had to cancel 2 appointments because of bedridden weakness due to anemia and pneumonia at the same time! Can you believe my rotten luck? Then the Augmentin made me feel like a zombie.

    I'm finally seeing my new PCP tomorrow.
     
    Valentijn and Gingergrrl like this.
  7. Gingergrrl

    Gingergrrl Senior Member

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    @PNR2008 Good luck with your new PCP and sorry to hear about the anemia and pneumonia. Hope your new PCP is helpful.

    @paulgrose Sorry, I wish I could be more helpful re: the TTT and questions you asked but hoping in bumping this thread back up, someone else will have some more feedback.
     
  8. bel canto

    bel canto Senior Member

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    @Gingergrrl - Did the doc or the techs know that you had taken the atenelol? It will definitely keep your heart rate down, sometimes by quite a bit. I would think that the test would not be valid for diagnostic purposes if you were on that medication, since pots (t for tachycardia) is by definition diagnosed based on heart rate. Maybe your doc knows of some reason it wouldn't affect your test. Good luck with your visit tomorrow - I hope he/she has lots of answers for you.
     

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