Back with a bit of an issue. My daughter is finding that her headache is becoming a problem again – she is very dizzy (lightheaded/faint) and light and sound sensitive again, as well. Her headache had been gone entirely on the Diamox. We have increased the dose – now she takes 125 mgs morning and night. Increasing the dose has seemed to help, but her headache is still significant (hovers around a 6/10) and it never goes away now (only ever reduces to a 2/10).
We just got bloodwork done to check her CO2 levels – should hear back in the next few days what the results are. In the meantime, we have baking soda capsules for her to take. If her CO2 levels are too high, is it typical for the Diamox to just not work quite as well? Or would it stop working entirely?
Also, I wanted to ask how much barometric pressure can effect ICP… These headaches started a couple weeks ago when we had a couple nasty weather systems passing through and I was hoping it was causing a temporary problem. But, the storms passed and the headaches didn’t – although they do seem to worsen when the weather is bad and are better when the weather is clear. Anyway, I just watched the CSSVI video and Dr. D mentioned barometric pressure and it reinforced what I was thinking. Could barometric pressure changes have tipped her ICP to the point of having more problems, particularly if her CO2 levels are iffy?
Thanks! We may end up seeing our physicians assistant who prescribed the Diamox, so I would love to have some info for him from the people who really know about this!
YES! Baking soda capsules are a MUST. If her CO2 goes to 22 or below, Diamox won’t work (trust me. BEEN THERE). We are usually at a “tipping point”, where even small changes in pressure affect us a lot (like barometric pressure). To get a bit more wiggle room, you need to get her more alkaline and KEEP HER more alkaline. Start today! Capsules work best for us, but some people dissolve it in water and drink it. I actually ATE IT out of the box one very desperate day! Be sure that you are watching her potassium levels, too, OK? My cardiologist had me check my CO2 and potassium every 2 WEEKS until I convinced her I was stable, and able to tell when things changed.
Let us know how her blood work comes out, but you don’t need to wait for that to start baking soda, OK? 🙂