Hello everybody-

I'm a prosecutor with chronic CH, and have been abusing the imitrex injection multiple times a day just to avoid losing my job. Ironically, the need to run out of the courtroom to inject myself had run its course.

In a quest to find out why I was getting so many attacks, I quit smoking and drinking and changed my eating habits. I considered living off of water for failure to discover a cause. Unfortunately, not eating is also a trigger.

I've been reading posts on this site for a year now, first time posting. I want to thank everyone for sharing their stories as it has been as at minimum, therapeutic.  I have yet to meet a CH sufferer in person, and while I wouldn't wish this pain on my worst enemy, it's nice to know I'm not alone. I can't comprehend that there are many of you out there who have been dealing with chronic CH for over a decade.

I've been suffering with CH for the past 6 years, advancing to chronic in January 2009. I've tried all medications, but when I became immune to the nerve block injection two years ago, I found myself living and dying with the Imitrex injection. Due to the fact that I have anywhere from 3-5 attacks on a good day, and up to 7 on a bad (some rebounds) you could imagine that I have been using Imitrex more often than its "recommended dosage." The drug has clearly increased the attack duration, and they have become 3x more frequent. With work I couldn't find a better alternative.

Aside from the pain of each daily attack, the side effects of the preventives and abuse of Imitrex have been so bad I had to leave my job.

To get off the meds, I am now scheduled for a neurostimulator implant where 2 stimulators will lead to the back of the head (occipital nerve), and 4 will lay under the skin around the eye to the side of my face(peripheral/trigeminal). All of which will meet at the spine and connect to a battery similar to a pacemaker.

I'm interested to know if any of you have developed an immunity to the medications over years of abuse, and what your next step was.

Has anyone had surgery? any success?

Hope everyone has a pain free day.

-Evan

Thanks for responding! I tried 02 but it didn't work for me either. It was a quick experiment, as the tank ran out before I could find the right level. I then switched insurance cos which is another story.

My surgery is with Dr. Reed at the Reed Migraine Center in Dallas,Tx. The procedure has had great success with your typical migraines, but they haven't had many CH patients. The one great thing about it was they offer a trial which will assist in determining whether the actual surgery would be successful.  My trial was somewhat successful, as the attacks were reduced to two a day, and were about an hour long as opposed to 1-3 hours (without imitrex). The pain was still the same, and the doctor refers to my condition as a chronic migraine, which pisses me off.

I decided to have the surgery anyway as it isn't too intrusive, can be removed, and I'm fortunate to still have insurance. Im staying positive but even with the trial I still don't know if it'll do the trick.

Has Dr. Tepper performed this procedure on many CH patients?  It sounds a lot like what I am doing. Good luck in Cleveland. Please keep me posted as well.

My nuero at the headache institute in Manhattan has told me it  is having good success. He had one CH patient reduce his HA's from 7 a day to about 1 a day. I posted about it in the "medications & treatments" thread, under the topic "new surgical procedure." I believe it is fairly new, since he said the Cleveland clinic is the only place to get this particular type of surgery. I really won't know all the details until I see Dr. Tepper. I should have said Dr. Tepper arranges the procedure to be done at the clinic, he doesn't actually do it himself. I don't know how many he has sent out for, just that my doctor thinks it is my best chance, probably because I was in his office crying & asking for every nerve in my head to be fried. My lack of insurance is probably playing a role in him choosing this particular one, as well, since it seems pretty straightforward.I really hope you have amazing results with yours.

I haven't gotten to the point of needing surgery yet, however I am being treated in Dr. Teppers practice by another neurologist. So far, they are amazing!! Good luck!

Lance, thanks for the kind words. You are proof that surviving this f'ing thing is possible.

I was switching days between migrainal and imitrex and the migrainal eventually stopped working. I also haven't noticed much benefit from the preventives, like Ariel.  The only thing I noticed was the rebound ha's were more common when off Verapamil. 

Ariel, hang in there! Some of the HA's might be rebounds from all the pain meds you're taking. They just keep coming back EVERYTIME I take a pill or injection.

When Im strong enough, I'll fight through an HA by chugging a redbull and holding a steaming hot towel over the eye. On occasion, the hot towel will alleviate or distract me from some of the pain.

I've noticed that the less sumatriptan I take the less HA's I receive. By fighting through one, the next won't come back as quickly. It's not something that you should necessarily do, but something I've done when physically and mentally capable of fighting back.

Good luck, and I hope to hear tomorrow is a better day.

Evan

Is your dr. part of Dr. Tepper's practice as well? My DHE was in the pain management center today but it was all ordered by Dr. Kreigler who I see at dr. teppers office. They are all great though. I have been EXTREMELY impressed with them. They go  out of their way for their cluster patients.

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