Sorry there haven't been updates lately, but not much has gone on. After using the Indomethacin for several days, I had to stop. Not only was it making me nauseous and that type of thing, it was making me sleep 18 - 24 hours/day (I had to force myself to stay awake longer than 30 minutes at a time). Not very functional. It did work very well. Headache was gone, I just wasn't awake to enjoy it. I stopped taking it and my sleep went back to my normal routine.
[And, yes, I was taking the Indomethacin with meals - if it had been just stomach issues I would have stayed on it.]
So, went to the neurologist again today. The Indomethacin does seem to have eliminated the frequent stabbing-type pain, as those have not returned. The main headache is now, for lack of a better word, fuzzier. The pain's there and so intense some days I can't follow a conversation. However, it's as if someone ground off the rough edges of the pain so it's hurts in a different way
We're now going to try taking a much lower dose of the Indomethacin (1/6 what I had taken before) and add in another drug, Gabapentin (generic for Neurontin). Neurontin has been shown to be effective for nerve pain, so I'm going to take Indomethacin at night and Neurontin in the morning and see what happens.
I have not ruled out going to Mayo Clinic, but would rather work with my current doctors until we hit a complete dead end. It seems like it's taking so long, but trying a drug to see if it works is just time-consuming and there's not much I can do to speed up the process.
That's all for now. After driving and interacting with others, the headache is getting worse again. I'll catch up with y'all later.