"Suffering the Slings and Arrows of Outrageous Fortune"


When taking Diamox, there seems to be a never ending battle to maintain an alkalinity level that allows the medication to work. So, baking soda in some form is necessary to combat acidity. We learned this the hard way, when suddenly, after 4 months of the Diamox working perfectly and being headache free, Em’s headache suddenly returned.

We dutifully added in baking soda capsules and gradually ended up increasing her dose of Diamox over a few months. At some point, we switched to baking soda tablets – 1) the tablets have a higher dose than the capsules she would take (size 1), so she can get more in fewer pills and 2) the capsules were such a pain to fill, particularly as she was needing more and more to do the trick. Anyway, after a couple months of blood work every couple weeks to monitor Em’s Co2 levels, we were able to determine that the ‘normal’ range of simply staying above 21 wasn’t really sufficient for her. She needs to be more in the 24 range – when she is, her headache is controlled, if she is at the normal 22, her headache is not controlled. To get there, we just increased the dose of baking soda until her CO2 levels were at her optimal level.

At any rate, this is an ongoing battle and we are really learning as we go – pretty much the story of our life! Recently, we made a discovery that was a bit interesting and gets added to our dim understanding of all of this.

We ran out of baking soda tablets over the weekend and I wasn’t going to be able to get any more for a couple days. Being without the baking soda, even for a couple days, was not an option. Since I still had plenty of the empty capsules, I just filled 50 or so and calculated that 8 capsules, at somewhere around 400 mgs each, should be the equivalent of her normal daily dose, so she should be fine.

She wasn’t fine. At all. While she was initially thrilled about taking the capsules again because she hates the tablets, her headache quickly returned. Like by the first evening, just a couple hours after taking the capsules instead of the tablets, her headache was bad. And only worsened over the following day.

I was a bit perplexed, to be honest. I mean, I totally get that the big variable is the dose: that is the big benefit of the tablets for us – the dose is exactly the same, every single time. But, still, I try to be very careful about being as consistent as possible when I fill the capsules and even if there is some variability, it can’t be so much that they simply don’t work at all. So, with no good explanation for it, I got myself to the pharmacy at the earliest opportunity and got more tablets for her. She was with me and she took some on the spot. Within a short time, her headache eased.

Later that evening, Em wondered aloud if she was absorbing the capsules and I realized that poor absorption is probably the answer. I didn’t actually shout ‘Eureka’ but I did breathe a huge sigh of relief to find a likely answer to such an important question. EDSers can have terrible absorption and, with Em’s GI issues, we know she has trouble with this. So, I suspect that, for whatever reason, she just cannot digest the gelatin capsule properly and therefore was not getting much benefit – if any – from the 8 capsules she was taking. As a hypothesis, it is as good an explanation as we are going to find.

It actually would explain why she never got much benefit from the capsules and why her headache got significantly better when we switched to the tablets. It did have something to do with increasing the amount, which raised her CO2 levels, but it probably had more to do with the method of delivery. I think it is just those particular capsules, because she seems to be fine with her Neurontin, which is in capsule form. But, it is definitely something to be aware of as we go forward and something to keep an eye on. The fact that she likely was not absorbing enough baking soda to control her acidity also explains why increasing the Diamox, after a certain point, did no good whatsoever.

So, we know that she doesn’t get any benefit from the capsules and that 5 650 mg tablets a day do the trick quite well. We know that she needs to be hovering around a CO2 level of 24 and that more than a total of  500 mgs of Diamox a day is unhelpful, at this time.

Piece by piece, the puzzle comes together and the big picture makes sense. And, I learn something new everyday! Eureka! 🙂



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