Been quite a while since I posted – my daughter Emily is still doing well on the Diamox (500 mgs split over 3 doses during the day). Her autonomic dysfunction still comes and goes but is considerably better. Her headache is managed and her neurological symptoms are much improved, thank God!
We did find that her acidity level was the key. When her headache returned after 4 months on the Diamox, we started her on baking soda capsules that I was filling for her. Eventually, we switched to baking soda tablets that I purchase from Walgreens. We monitored her CO2 levels and found she needs to be above 22 – below 23 means the headache is back. She takes 5 650 mg tablets a day and that seems to do the trick.
We did discover something important that I wanted to share, as it could be helpful to some of you in similar circumstances.
This spring, right as we were trying to get her acidity level under control, she had an appendectomy and has started having some troubling GI symptoms – symptoms of Gastroparesis. Slow motility, poor appetite, etc. The baking soda tablets seemed to work better all around than the capsules, so we just didn’t think much of it at the time.
Then, recently, we ran out of the tablets – it was the weekend and I couldn’t get to the pharmacy. So, I filled some of the capsules that we had left over for her to take until I could get the tablets.
Within an hour of taking the capsules, her headache returned and got progressively worse over the next 24 hours or so. I just couldn’t figure it out – I know the dosage is less precise in the capsules but not so much that it wouldn’t work at all. Needless to say, I got the tablets asap because she was miserable. Within the hour after taking the tablets, her headache was gone again.
We finally concluded that she wasn’t able to digest the gelatin capsule (at all? fully?) and so was not getting enough of the baking soda into her system. She clearly is able to digest and absorb the tablet.
So, the moral of the story is – if the Diamox isn’t working, you may not need to increase the dose. And if the baking soda capsules aren’t doing the trick, you might try the tablets or a different brand of capsules if there is a possibility that your absorption is poor (and that is the case for many EDSers). I don’t know exactly what it was about those capsules – she takes other meds in the form of capsules and they seem to work fine, but we will keep this problem in mind and monitor any meds that seem less than effective!
Hope that story may help someone – it was definitely enlightening for us!