I'm sorry for the long text, but it's important I explain what's going on in order to lead up to my question in the end: I was diagnosed in early 2024. I've been on Diamox since September of the same year. Over the course of the next year it was increased to 2,000mg, and I was pretty much symptom free for a while. But then I started to go into bouts of metabolic acidosis (lowest level was 12, I was very sick). From the first time I experienced acidosis in June 2025 to December of the same year I was in the lower end of moderate acidosis 5 times, all enough to make me too sick to function.
My neurologist decided to start lowering the Diamox in hopes to prevent further episodes. Between December of '25 and early March of this year, I was acidosis free. Then at the end of March it hit me again, and since then I've gone "in and out of it" 3 times. I can't seem to get above a CO2 level of 18, which isn't terrible but it's enough to make me sicker than a dog. I went nearly 2 months without being able to keep up with chores or exercise my dog the amount I should. I barely showered, I slept way too much. I couldn't walk further than my kitchen without running out of breath like I just walked a quarter mile uphill (you all know the drill.)
I'm now on 500mg Diamox and 20mg Lasix and all of my IIH symptoms are flooding back. I feel like I'm not even taking meds anymore, and my blood test today shows I'm slipping back into acidosis yet again, after less than a week of feeling better, but not quite 100%. The Diamox cannot be lowered any further. I'm on the highest amount of Lasix my neurologist will allow. I don't tolerate Topiramate. I don't know what the next step is and I'm scared. My body can't continue to go into acidosis over and over again. If anyone here has been in this position, I would love to hear your feedback, because my neurologist doesn't seem to have a Plan B right now.