I’m currently dealing with a lot of other things as well, but headaches and substantial ringing in the ears (think 10 ft from the speakers at a Rolling Stones concert) and pulsatile tinnitus. I can actually have two different headaches at one time - on the right half of my brain, it’s a throbbing that goes from 4 to 7 to 4 to 7 (repeat) in time with my pulse. The left side just has a full blown the whole front left half of my head hurts. It’s special. (Sarcasm alert).
My neurologist has me on Amitryptiline (Elavil) and Topomax. He started the Amitryptiline at 10 mg and we increased the dosage by 10 mg ever week until we got to 50. Then we jumped to 75 mg. The only change that I saw was that when the headaches spiked most of them didn’t spike as high. I used to get say 2 episodes a day where they would spike up to 8 - usually for less than a half hour and start coming down. Now I probably get 2 a week. I still get as many spikes, just not quite as high.
Last week, after reporting the virtually non-existent improvements, the doc wanted to add Topomax and see me after I’ve been on it a week. That’s tomorrow.
I’m on some pretty strong meds already - and they really haven’t done a thing. So, my questions I’d love input on:
- If any of you have found success in dealing with AVM headaches, what med was it that helped - message me if you’d prefer.
- What questions should I ask the neuro doc tomorrow? As we are just over 6 months post op and getting closer to getting Social Security Disability approved (I’m on a first name basis with the lady handling my file), I’m trying to figure out more what I’m going to have to live with and how - so I can get “unstuck.”
Does that all make sense?