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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

update Diamox and Sodium Cromoglycate Capsules (Nalcrom)

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  • January 4, 2013 at 2:23 pm #384
    diamondcut
    Participant

    Just a quick update with how i am going with Diamox, its is most certainly helping and i seem to be adjusting to having an afternoon dose and a higher nightime dose. I am having my Potassium levels checked next week too. Can anyone tell me on this, when i asked my GP if i could have my CO2 levels checked also, he thought that would be Bicarbonate level. Is this correct?

    I am just starting Sodium Cromoglycate Capsules too, or Nalcrom which is Gastrocrom in the US i believe. Can anyone tell me is it vital to have the nasal spray form if you can tolerate the oral pill version? What is the ultimate dosage to try to work to, i am very sensitive to meds so will have to go slow.

    Many thanks

    January 4, 2013 at 5:15 pm #3296
    Dr. Diana
    Keymaster

    Hi Diamondcut, Ooh, ooh, ooh, I know this! (I feel like I’m in 7th grade again. ha.) Lab Corp calls their CO2 test “Carbon Dioxide, Total”. You want that level to stay above 22, if at all possible. The sicker we are, the harder that is to do, it seems. Nasalcrom is the nasal spray for your nasal passages. You need Cromolyn — either the liquid, or the capsules DISSOLVED IN LIQUID. Your formulating pharmacist can help you with that. I tried just popping the pills. I don’t believe it is as effective as dissolving it first, however. It was so hard for me to get that stuff to dissolve, I found myself licking the sides of the glass to try to get it all! (great visual). I ended up going with Ketotifen (available from Canada). My research indicates it may work a tiny bit better for us, too (research to be released ASAP). If your doctor is comfy prescribing from Canada (I had a doctor/friend in Canada to guide me), Ketotifen is just a tiny pill twice a day. Easy peasy. Remember, it takes a few WEEKS before you start to notice that you are standing without panicking! Enjoy, and let us know how it goes, OK? 🙂

    January 4, 2013 at 6:22 pm #3297
    diamondcut
    Participant

    Thanks Diana!
    Thats really helpful to know, its a shame my Dr couldnt find gastrocrom here in the UK, but i will give it a try dissolving first and then perhaps trying Ketotifen if it has more benefits to it.
    Shall of course post how i get on later!

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