Hey Kamillean,
I don’t have all the answers – in fact, I have some of the same questions! But, I will say what we are doing for my daughter and hopefully others will chime in with more info.
My daughter is now on 125 mg of Diamox 3x a day. One dose at night had been working perfectly for almost 4 months until the headaches suddenly returned. Adding a morning dose helped some but the headache is still a problem and is quite variable from moment to moment and hour to hour. We just added the 3rd dose – she hasn’t taken it yet so we will see how that works.
We got bloodwork done to check her CO2 levels (and potassium, sodium, etc). I have read that the normal range for CO2 is 22-32, although our doctor said the bottom range is 21. Em’s CO2 level was 23 – he said it is in the normal range so it isn’t a problem – but I do feel that being on the low end of normal, she was getting too acidic and maybe that was minimizing the effect of the Diamox.
We had started her on baking soda capsules as soon as she had the bloodwork done, per Dr. D’s advice. (I purchased empty gelatin capsules at a health food store, you can also order them online. There is a kit you can order to make filling them much easier, but I have developed my own little system that is doable for now. Oh, and you can purchase baking soda tablets cheap at a pharmacy but my daughter ‘needs’ the capsules and I don’t feel like arguing with her! Tablets would be much easier than fiddling with filling the capsules – the things we do for our kids!)
She takes 5 baking soda capsules a day – but I really have no idea on how many she needs to take. I read online of people taking high doses of diamox taking lots – like 12 or more a day, to regulate their CO2. The capsules we have hold 250 mgs – I guess 5 would be 1,250 mgs a day. It doesn’t seem to be doing much, so maybe we need more until it regulates? It is so hard to tell – I think it might be working – the headaches aren’t as bad as they were initially, but we have also added additional doses of Diamox and the headaches are still a problem so I just don’t know. The 5 she takes are spread out through the day, maybe she needs to take them all at once?
I am starting to wonder if we need to look into CCSVI – but I think I will start a new thread for that question.
My daughter also takes Zyrtec and Zantac. She is on 150 mgs of Zantac 2x a day. I don’t know if that will do anything for the CO2 level…
Kamillean, it is really good to hear from another mom who is dealing with the same issues! Hopefully we can get answers for our girls!