I just found this forum and it is really wonderful.

I got my first migraine at age 12. However, my journey with NDPH began on 10/28/97, while I was playing field hockey. (No head trauma or anything) I just got a headache that never went away. I was diagnosed at the Jefferson Headache clinic in 2004, though the other drs had always called it chronic intractible migrainel. I am really glad to find that there are others who go through this, though I wish none of us had to.

I am currently in grad school working on my masters in education. I do have a disability qualification for school, which helps, and great friends.

Over the years I have tried a host of preventatives, but have really only had any luck with Zoloft, Zanaflex, Periactin, Tegretol, Florinef, and that is about all. I have tried all of the triptans, and they worked for a while, but not a long time. I am now on a combination of zoloft, zanaflex, and a long acting pain med for control of migraine and pain. Steroids or IV Depakan are about the only things that will break a cycle. I have a great neuro.

I also have an occipital nerve stimulator to help control the headaches, though I still have to take some pain medication (daily, but it helps me live the best life I can.) I am glad to found y'all and look forward to posting more.

Pain Free days,

sailingm

Post edited by: sailingmuffin, at: 08/12/2007 12:17

Thanks for the welcome, I am really glad that I found this site.

I am in Montgomery, currently attending AUM. Where are you? My neuro is at UAB- unfortunately, my old one, who was really wonderful just left, but he referred me to his partner, so I will see the new neuro in November, unless there is a cancellation.

My headache encompasses my entire head, so it is bilateral, and it is always there. The occipital nerve stimulator was originally implanted at Jefferson in Philadelphia in 2004.. I was referred by Dr. Siberstein. Basically, there are two leads in the back of my head, then the wires connect in my shoulder and run down to the battery in my hip. It is similar to a pacemaker. The stimlator sends a false signal to the occipital nerve to trick it, so that the nerve will not send the pain signal. It helps a great deal. The first 8 months were wonderful- the headaches went from daily to 2-3/week, and 2/month that required either steroids or an Iv of Depakan.

Unfortunately, the left lead broke eight months after the stimulator was implanted and had to be replaced. The stimulator still helps a great deal, but it does not take the headeaches away completely. However, it seems to bring the headache down enough so that the headache can be controlled with medication.

I know it may not be for everyone, and the stimulator is only one way to control the migraines, but it really helps a lot. I hope this answers your question, if not, let me know and I will be glad to give you more information.

Pain free days,

sailingm

I have an implanted occipital nerve stimulator. It was implanted at Jefferson in 2004. A lead broke in 2005 and was repaired in July 2005. I had a revision surgery in JUne 2007 done by the original surgeon. He is great.

I am not limited in what I can do with the stimulator. You cannot go through metal detectors at airports and other places. I have found that if you simply tell them nyou have a pacemaker, there is no problem. Sometimes, I will get a small jolt in stores, but nothing that disrupts the stumulator too much. It has helped me- mainly be allowing medications to work again. So I would definitely go for it. You need to be careful about carrying things for the first few weeks, but other than that- no prioblems.

Pain free days,

sauilingm