Dr. Diana,
It was very interesting to me to hear that mast cells can cause cysts in the liver! Finally, an answer! I have several cysts and no one knows why, but I also have at times horrible pain in my liver area!Also, when researching Diamox more (still trying to get these headaches figured out… only on 62 mg at night – can “rebound” headaches happen? I totally get the whole dynamic componant – wondering if I should take another 62 mg dose if I wake up at night with the headache?) I saw a lot of links to psuedotumor. This is very interesting to me because when I was 14/15 and had been plagued with headaches for about a year, my doctor sent me for a CT scan (nice bonus… I reacted to the contrast, scared me bad!) and the report said I had a psuedotumor. Dr. told us it was nothing to worry about and never did anything about it.
Is a psuedotumor related to brain pressure?
Hi, just to clarify — we see liver cysts with EDS, and these patients usually have MCAD. I don’t think we know if the cysts are MORE due to EDS or MCAD, though. However, MCAD DOES cause our liver enzymes to go wack… (fine points, I know). 🙂 YES! Pseudo tumor cerebri is a presentation of slightly high brain pressure. I’m not sure why your doctor didn’t start you on Diamox at that time (the standard treatment). And yes, when my son and I were fiddling with our Diamox dose, sometimes we’d get headaches (usually on the tops of our heads), and sometimes not. As you mentioned, our pressure is dynamic, and interestingly, one of the side effects listed is “headaches”! So we continued to “fiddle” a bit, but eventually the headaches just went away. I’m not sure if it was because the dose was more of what we needed, or if it was just a pesky side effect that went away by itself over time. I went on the 500mg Sequels for a while, thinking diamox was wearing off in the middle of the night. But went off of them when I became too acidic. Now, it’s just not an issue, and I hope the same thing happens to you. Fortunately, my neuro gave me plenty of wiggle room with my dose, and my cardiologist checked my serum CO2 and potassium regularly for a while, until everyone was comfortable with what was going on. My dose stabilized, as did my CO2 and potassium levels. My son still fights with borderline low CO2 levels, but he’s a bit more resistant about taking the baking soda capsules (poor kid). He is, however, attending school now for the first time in 3 years! Yea! Bottom line, fiddle with your dose a bit, roll with a few of the headaches and watch your CO2 and potassium levels. With your doctor’s help, I betcha it will all settle down — it just takes a bit of time. 🙂