Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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OI symptoms and treatment

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by maddietod, Sep 11, 2013.

  1. PNR2008

    PNR2008 Senior Member

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    Thanks Sparrowhawk, my BP wasn't terrible throughout this whole ordeal but when they took it I was mostly lying down, then sitting, then standing but not long enough. I said let me pretend like I'm vacuuming. That's the problem but I've had two tilts and an autonomic test that were abnormal years ago. Never before has OI been a problem more than ME/CFS/FM but now I feel awful out of bed. Even in the hospital I slept and made my bed into a little cocoon with pillows because I was so weak and vulnerable. I could have slept the entire time.
     
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  2. PNR2008

    PNR2008 Senior Member

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    Sushi, I would love to get saline on a weekly basis and even a little oxygen. Not sure if medicare would pay for an out --patient. Money is very tight. My doc is taking me off florinef for a week then restarting and I'm already on propranolol maybe that dose will be adjusted. Sushi, what have you tried, what worked? I don't mean to sound morose but I feel like I could die during these episodes not that I am dying but that I could. Actually I'm too weak to even have anxiety about it. Just a falling off a cliff backwards kind of thing. I even got my old sensation of dropping a few floors in an elevator. Who needs Cedar Point? (Amusement Park in Sandusky, OH)
     
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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi PNR,

    To make sure a member sees a post directed at them either hit reply (as I did now) and fully or partially quote them or type PNR2008 and you'll see that you get a notification both ways.

    I don't know if Medicare pays for saline infusions but some here are getting them so maybe they will report.

    For me Strattera was miraculous for OI but it is individual. Most need to try a string of meds. Midodrine helps many (wasn't good for me), clonodine helps some (not me), adderall did help me at a very low dose.

    Gradually my OI improved as I treated pathogens, methylation and heavy metals so now I can make do with compression knee socks. If you haven't tried compression garments and lots of electrolytes, salt and fluid each day, these are big helps. Powdered electrolytes can be added to your water.

    Also, remember that Florinef depletes potassium so that should be regularly checked and probably supplemented.

    Sushi
     
    ahimsa, SOC, Sparrowhawk and 2 others like this.

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