Migraine

Hello again!

I haven't been around much lately... I've really been struggling to keep up with work with all the migraines and doctors appointments. I saw my neuro again last week, and she adjusted my meds again. I have been having trouble with intractable migraines a lot lately, so I had her refer me to an anesthesiologist for nerve blocks and IV therapy.

I went to the pain management clinic last week (Integrative Treatment Centers in Westminster, CO) for the first time and had a wonderful appointment with Dr. Daniel Bennett. I went in expecting to discuss options for nerve blocks and IV treatments for refractory migraines, but after a thorough examination, he told me I was a perfect candidate for an Occipital Nerve Stimulator implant.

He thinks that on top of my migraines, I also have a headache disorder called SUNCT, as well as something called TOS (thoracic outlet syndrome) which is causing my shoulder problems and arm numbness.

He also ordered a cervical spine MRI for me to make sure there weren't any injuries or defects there that needed to be addressed (they came out clear). He explained to me all the different neural pathways in the brain and the mechanisms of a migraine. It was a wonderfully informative and insightful visit.

I apologize for the rambling post... I have had a hard time this week with the meds making me really loopy. I met with Dr. Bennett's partner yesterday, a neurophysiologist named James Hagen. He was also fantastic... he really took time to question me about my migraine patterns and ensure that I am a right fit for the neuro stim device. He said that patients with my type of migraines have had good success with the device. He informed me of all the risks and answered all my questions about it, and gave me an article (abstract) that they wrote about the treatment.

I just wanted to share my experience with this clinic... it seems like it is rare these days to find doctors who are willing both to educate you *and* actually listen. I have to say that I am tempted to try this device. I am on so many drugs now, and although they do a fairly decent job of stopping the migraines or reducing the intensity, they haven't gotten rid of them completely. And I am really tired of all the side effects. If there is half a chance that this could help me reduce the number of drugs I have to take, I would welcome it.

If I decide to go through with it, I have to see a medical psychologist and then have a trial device implanted to test for a week. I think I may do it at the end of the summer... we'll see.

Anyone else have any thoughts about the neuro stim devices? Anyone else have SUNCT?

Oh, on an unrelated note... James Hagen gave me a medic alert pamphlet, and the service fees are only $15/year. They ask for donations, but all that you have to pay is $15. Just thought I'd let you all know, since I know we had a thread about that awhile back.

I just wanted to say YAY for such a great doctors visit! I'm so glad you have found someone willing to explore all options, and explain them to you!

Hi, e, good to see you again.

I'm going to link to a thread we had about ONSTIM a while back. I would ask that you take note of Teri's posts about it on the second page--don't give up reading and not see those. It does sound as though the doctor thinks the ONSTIM is indicated for some conditions other than migraine.

ONSTIM approved and waiting on surgery date

Here are a couple of links about SUNCT:

Deep Brain Stimulation Aids Those With Rare Headache Condition

Anyone recognize this kind of headache?

I'm glad the doctors were good listeners and good educators. Those are very important qualities.

Good luck.

e,
I'm happy for you to have had such a great appointment. You're asking great questions about the device.

Good Luck,
Cindy

It always feels like such a success when we find a good doctor, doesn't it? I'm so happy for you.

Nutcracker: Thanks for the links - I actually did read those before my last appointment, and wanted to start up the discussion again. The doctors explained to me that although the ONSTIM is not yet FDA approved for migraine, they have been able to convince several insurance carriers to cover it. Fortunately, my insurance is one of the ones that will cover the procedure.