I have read about some of your struggles and wanted to post hoping that we might be able to help someone who may not be aware of every option for their migraines. My wife has gone through a lot of what you have gone through and we found an answer. She is 34 and has had bilateral migraines (not always both sides at the same time) since she was 5 (they ran in her family, but none of her relatives’ pain was like hers). They got progressively worse and nothing worked – she couldn’t take Triptans, steroids, etc and for the past 6 or 7 years, the only thing that would break the headaches was ER visits for IV narcotics. She tried preventatives and everything else in the book. Eventually she went for peripheral nerve decompression and sinus surgery with Dr. Guyuron in Ohio. This did not work either (the sinus surgery did) – after eight surgeries, she had enough. about 6 months ago, I looked into other kinds of facial pain and the possibility of a misdiagnosis. I considered that perhaps it was some kind of Type II, or Atypical Trigeminal neuralgia (no shocks, just pain).
I was going to bring her to Johns Hopkins, but noticed that most people that went there who had Atypical Neurgalia (or “really tough cases”) were referred to Dr. Jefferey Brown in Long Island, NY. We went to see him in the early springtime with no expectations. My wife had a “Thin-slice MRI” before seeing Dr. Brown. This newer technology is usually used on Trigeminal Neuralgia patients to determine if there is internal compression of nerves in the brain. He diagnosed her with chronic bilateral intractable cluster migraines. Sure enough, the scan located two arteries (one on each side) that appeared to wrap around her Intermediate Nerve. Dr. Brown indicated that two microvascular decompression (MVD) surgeries (performed separately at least six weeks apart as long as the first one was working) would be the next step. She had the first one in June (left side), followed up with Dr. Brown two weeks later (pain-free on the left) and her second one in August. In both cases Dr. Brown located and moved the offending artery off the nerve and put teflon between the two. My wife has not had debilitating pain in at least eight weeks. She gets a “regular” migraine about once a week – she says they tend to hang around a level 3 (out of 10) and one or two Fioricets knock it out within hours. Her life has changed dramatically and she has been fully functional (even exercising) since the end of her recovery.
It’s not an easy surgery by any means – it’s brain surgery and the recovery for the first 10 days (3-4 of which are in the hospital) or so is difficult. But, for those of you who are at wits end, the least I can suggest is to go see Dr. Brown and have the MRI. He is a kind man who has performed a miracle in our lives, and, as an added bonus, everything was fully covered by our insurance company as a standard procedure (unlike the peripheral nerve surgeries, which are hit and miss). He has arrangements for out-of-town patients, and I would see him regardless of where you live. My wife’s neurologist is now going to be sending some of his more difficult patients to see him. I do hope this is somewhat helpful. Please feel free to ask any questions you might have.