Migraine

Hello all. I'm hoping someone here might have previous experience with John Hopkins. I've had migraines for 30+ years that are now lasting weeks. As you all know this has just disabled every aspect of my life. It is like a domino effect. You can't eat right, sleep right, depression well.. you can imagine, exercise is impossible, I'm on short term disability at this point, living in a dark room, avoiding light, sound etc, and pray for those few hours when the headache drops on the scale some so I can just feel life for a bit.

That aside. My neuro has agreed he can't do anything else for me so he is referring my file to John Hopkins and I'm waiting to hear from them. Has anyone here had any previous experience with them, thoughts, advice, anything?

Thanks. And sending you all my wishes for a pain free day.

Hi Sherri,

I'm glad to hear your neurologist is open to a second opinion. That is a good sign.

I don't know anything about John Hopkins, maybe someone will be along shortly to help and share their experience.

My mother is going through Hopkins right now for her migraines. A couple weeks ago she was there for several days for IV DHE treatments to help break the cycle. Unfortunately, they didn't help. Right now, they are trying her on Lyrica as a preventative.

Much of what they are doing I've read about. I.e., they worked on getting her off of fioricet (she has daily headaches in part because of the fioricet), only want her to use an abortive or rescue med 2-3x per week to prevent rebound, and are stressing trying to find a good preventative, and that that can take some time.

IMO, the DOCTOR is more important than the institution or facility. That said, I can't offer you any info on Hopkins doctors because nobody has ever sent me any feedback.

I second what Teri said.

The doctor is more important then the facility.

Also, on that note, you can go to the top specialist in the world, but if you don't "gel" with them, then that doctor may not be for you.

You need to have someone on your healthcare team that you can work WITH and that you TRUST - that is what is most important.