The 12th Invest in ME Research Conference June, 2017, Part 2
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Please help with SEVERE pots/dysautonomia; ANY tips appreciated

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by keenly, Dec 31, 2010.

  1. ahimsa

    ahimsa Rarely on PR now

    Hi, Nielk! I see that you were asking someone else this question about tilt table testing so I hope you don't mind if I interrupt this thread to post a response. :D

    The protocol for tilt table testing (angle of the tilt, length of test phases, etc.) can vary depending on where you get the test done. For example, sometimes the first part of the test lasts only 15 minutes long. For some patients (including me), 15 minutes is not be long enough to get an abnormal test result. I've had two separate tilt table tests. The first one was for diagnosis and the second one, 8 years later, was done to add more proof for disability insurance. During both tests my blood pressure dropped suddenly and I blacked out -- a very clear abnormal test result -- but it took 20 to 30 minutes before that happened. The Hopkins protocol waits 45 minutes in the first stage.

    Another issue is how the results are interpreted. Some patients get symptoms and/or readings that are not completely normal BUT since they do not faint then the doctor may decide that the test result is normal. I don't have as much information about these situations (since my own response was so clearly abnormal both times) but I have heard about patients who were told they did not have any problems and later found out differently from doctors with more knowledge about orthostatic intolerance.

    I searched for information on tilt table tests and found a Johns Hopkins web site with information. Here's a web page with basic information on the tilt table test:

    And here's a link to some more detailed information about their protocol:

    This protocol description might answer your question about the IV insertion. I tested positive in Stage 1, before any medication was injected. But I had the IV inserted at the beginning of the test so that it would be ready if needed. After my abnormal test the IV was used to administer saline. That was really helpful for my recovery. Patients who do not have an abnormal result in stage 1 will go on to stage 2 where a drug is injected to try to induce symptoms. If I recall correctly they use a drug called isoproterenol. (but maybe other drugs are also used?)

    One last comment regarding whether one should even take a tilt table test. These tests can be very useful to support disability insurance claims. And the test would probably be quite helpful for validation of your illness (e.g., doubting friends and family will be convinced because you simply can't fake a huge drop in blood pressure). However, this test is not very pleasant. I was wiped out for at least 4-5 days after the first test (on the second test the doctor was waiting for my BP to drop so he put the table flat just as soon as it happened so it was not quite as bad). From what I have read a tilt table test is not necessarily needed before treatment can start. I believe that some doctors will look at your symptoms and if they match up very closely to what is expected for POTS or NMH then they might try treatments (increased salt and water intake, fludrocortisone, midodrine, beta blockers, etc.) without having to do the tilt table test.

    Best of luck with your test!

    Oh, make sure you have someone else to drive you home after the test. No one told me that before my first test. Even though I was given a full bag of saline by IV after the test, and then I waited and rested for more than an hour in the waiting room, it was probably not a good idea for me to drive myself home. I did it because none of the doctors, nurses, or receptionists had told me that I needed someone to drive me home in case I passed out during the test. I was okay but I think it was probably not a good idea. These days I think it's pretty standard for them to tell you to have someone else drive you home but somehow back then (1995) there must have been different standards. I was lucky that it was short drive and no traffic.

    Edited to add another link that describes the test and has photos:
    Alisha12 likes this.
  2. Nielk



    Thank you so much for all the details of your experience with the tilt test.
    I really appreciate you taking the time to help me out.

    I didn't set up the appointment yet because I'm nursing an ear infection.

    When I do get the test done I'll let you know how it went.

    Thank you,
  3. sandgroper


    west australia
    POTS can be primary or secondary illness. Those with primary POTS can overcome it. If its a secondary disorder then it depends on whether the underlying condition can be treated. If it can't there are many symptomatic treatments, some which have been mentioned. I have 2 conditions that are incurable and both can cause POTS. So what works for me might not work for you. I use licorice tea (made from dried herb) when my bp is low. Also I use sea salt and water. If i need to be upright i use counter maneuvers. In the past i have had IV saline but that is hard for me to access. I have a good BP machine and a HR monitor. Its been good to work out what is actually happening when I am upright and when I am supine......I take readings when i am symptomatic and when I am feeling better and know the level my bp needs to be at. Managing the HR is much harder than the BP for me.
  4. Sushi

    Sushi Moderation Resource Albuquerque

    Just a note on OI and me!--guess that could also be a song, any takers? :p

    My OI seems to be getting better and I am now noticing that it disappears for a couple of days after a pilates class which works the leg muscles a lot. So I am going to experiment with just doing some simple calf exercises each day and see if I can find a combination that keeps OI in check.

    Valentijn and merylg like this.

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