OI/POTS Need help.

Discussion in 'Fibromyalgia Main Forum' started by LMG, Feb 15, 2012.

  1. LMG

    LMG New Member

    I have had CFS for many years and was doing well enough. In sept I became severely ill with POTS. Heart races upon standing, severe headaches and nausea plus worsening fatigue and weakness. How did any of you treat or did you overcome any of the Oi/POTS? I don't have low blood pressure so florinef or licorice not options. Does Cheney or Myhill or Sinatra protocol help? Does it get better or does it just stay this bad? I have increased salt and fluids. Not much change. Any help or suggestions? Homebound now from this and can't get to specialist? Supplements or meds? Were any of you able to start walking and standing longer after a period of time?
  2. rockgor

    rockgor Well-Known Member

    Welcome to the board. Are you talking about Postural orthostatic
    tachycardia syndrome? I've had CFS for over 30 years. Never heard
    of the above problems before.

    However, I did read that these two diseases may be related. Here's
    a URL.

    Perhaps you have already visited same. Anyway it suggests that magnesium
    etc., may be helpful.

    Good luck
  3. LMG

    LMG New Member

    I have done a few IV salines and found a couple to be helpful and others didn't do much. What does the sudafed do? I would guess it would make the racing heart worse?
    I have read that a large percentage of CFS patients have this but I never did before and don't know anyone else with it. Klimas and other md's treat it but too far.
    I just want to be able to walk around a bit more again. was doing well before this.
  4. lea

    lea Member

    what type of dosage does one need of the Sudafed?
    thanks a lot
  5. redhummingbird

    redhummingbird New Member

    I'm sorry you are experiencing this-its not fun. I've had POTS the entire time I've been ill.

    My doctor prescribed a beta blocker called Pindolol. It's been incredibly helpful. Supplements didn't work in my case.

    If you google POTS place it will lead you to a great website (I don't think we can post links).

    I've had a good deal of improvement from the POTS. I notice that when it flares I'm either very crashed or some sort of virus/infection is going on, or I'm being exposed to toxins.

    Good luck!
  6. justdifferent

    justdifferent New Member

    How easy is it to diagnose POTS? I don't think my GP has a tilt table. I do have a blood pressure monitor but oddly enough it seems to error out if I try to take my BP / pulse standing up.
  7. Lookn4health

    Lookn4health Member

    Hi, I had problems this past year with seeing stars every time I tried to get something out of my kitchen cabinet below the counters. Then I started to see black when I did this. I also cannot stand up to do any kind of task like cooking at the stove. I can stand and wash dishes because I keep moving. But a lot of the time I still have to run for my bed to lay down before I collapse on the floor. When I make it to a grocery store and I have to stand in line to pay for something I about die. Standing I cannot do as I am on the verge of collapse. My husband takes me for groceries and he watches for me and he drives to meet me as soon as i come out of the store. However there are a few minutes that I have to stand there with the cart and my head is swooning and my chest is pounding. By the time I get the groceries in the car I am ready to collapse. As we drive out of the parking lot I am laying on the front seat as much as I can because sitting up does not work for me. I have to lay flat down. Needless to say this really makes me angry and in a very bad mood. I have gotten to the point that I cannot even recline in the recliner. I have to be laying flat on my back.

    I told my doctor (who knows nothing about CFIDS and cares to know less) and he said I needed a heart doctor if i was having problems standing up. So I went to 2 heart doctors. They had nothing to say to me about my problem. They ran all the tests and I was fine.

    Then I heard about POTS/OI/NMH. I called both heart doctors and asked about a tilt table test. Nada. So then I called neurologists and asked them about tilt table tests. Again nada. Then a friend told me to check with any medical teaching colleges in the city. I did find one at Baylor University. I called them and they told me I had to submit paperwork to them and they would show it to a doctor and he would determine if I could have a tilt table test.

    In the meantime I found out that I needed to have my gall bladder removed. During all the doctor visits to have this done (as I was still feeling like I am going to collapse) they discovered over a 2 week period that I was having extremely low blood pressure. One of the blood pressure pills that I was taking had a diuretic in it so they switched me to the plain version and stopped the other blood pressure pill I was taking.

    Then I went to a neurologist who had heard of these conditions and he agreed that I needed a tilt table test. I discovered this week when I had to get something out of my pantry that was over my head that I was seeing stars again. Also bending over to get something out of lower cabinets seeing stars again.

    I called this neurologist because I had not heard back from them on this issue. They told me who to call and I am in the process of figuring out how I am going to get to this hospital for this test. The test is in Methodist Hospital in Houston,TX in the medical center. I have no one to drive me there and I have no idea how far I am going to have to walk to get to the test site. I have a Rollator and this will be the first time I will have to use it as I cannot even walk to the produce section of the grocery store without having a cart to lean on.

    I will keep you posted once I know more about what is involved with this test and if it shows anything about the conditions I have. This has been going on for almost 30 months with me. I am on my 26th year of having chronic fatigue or an autoimmune disease of unknown origin. I do not have Lyme disease. I was tested twice in the last 6 months.
  8. LMG

    LMG New Member

    Red hummingbird- how long did it take for the beta blocker to work and did it enable you to stand up, walk or do more activities?
    They are thinking beta blocker or florinef for me, or both.
    I don't do well with drugs, but supplements haven't helped this particular issue. The OI is tough.