u/Admirable-Cream-2922

I had been taken off all meds (gradually weaned) in May under the assumption iih was resolved/in remission. Having excruciating headaches and eye pressure these last 2 weeks but my neurologist is out until September with nobody covering 🙃. Can’t be seen by my family MD until next week. Ironically I’ve had this happen previously and both my family dr and the Er physician told me to just keep trying to reach neurology as they weren’t sure what to do.

Looking for pain relief options and any advice on what to do. My kidney function isn’t great so I’m only taking NSAIDS when absolutely needed (like twice daily right now 😩) but still having so much pain

So long story…but hang in there. Really desperate for some advice. I have low gfr and high creatinine. For those of you who aren’t in the medical field essentially means my kidneys are functioning poorly. This has been ongoing for as far back as I can see on my health portal (which is around the same time i was diagnosed with IIH).

On top of that, my blood gas ph and carbon dioxide are low when I’m on either diamox or Topamax, also both indicators my kidneys are functioning poorly. All of my bloodwork improves (though not back to 100%) when I’m not on diamox or Topamax.

I recently was trialled (after a very slow wean by decreasing 250mg daily once every 6 months) off meds and am having symptoms again. Im having trouble getting in contact with my neurologist but am wondering if anyone knows any other options for management besides Topamax or diamox i can talk to my dr about?? I am terrified to end up significantly damaging my kidneys.

Also wondering if anyone has any experience with restarting meds at the last dose that worked for you? This is my 4th trial off meds over a 6 year period and we’ve always restarted at 1000mg diamox twice daily, but i was doing well previously on 250mg once daily. Again will talk to my dr but wondering if anyone has experience with restarting at just the 250 daily that worked previously or if i should re start at a higher dose.

Thanks in advance