Wow, after all these years actually finding a diagnosis for these headaches! Reading all these posts was a reflections of my life: I’m 68, female, had migraines since teen years, felt great for a couple of years during menopause then, wham, the nighttime headaches began. I tried everything the neurologist threw at me and some worked for a period of time, until they didn’t. Had scans, sleep studies. Finally relented to their recommendation of Botox about four years ago and am still on it (no longer receiving shoulder or neck injections which has created problems for me). Have also been on Topiramate about 6 yrs. Botox took over a year to kick in, then worked fantastically, not so great the past 18 months. Usually have pain five nights a week, but it’s NOT as bad as before and I sleep with an ice pack every night and put it over my eye/forehead at first indication of pain. Do I like subjecting my body to Botox poison? No, but I also don’t like hanging over a toilet throwing up in unbearable pain either. None of the pain meds worked and the older you get the less my doctors want to give them to you. Some of the new meds on the market remain untested with older women according to reseach I’ve done (which the doctors do Not tell you), and though my Neuro office was really pushing me towards it because their trial run was positive, they now have told me to wait. My very, very, unofficial observation has been that a lot of migraine sufferers have sensitive systems.
I’d like to get off both, shouldn’t be on Topiramate, never should have since I have osteopenia and now osteoporosis in areas. Tried weaning off Botox once and that was a mistake......