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

I'm going to be travelling to the Cleveland clinic to meet with a Dr. Tepper who, hopefully, will be implanting a stimulator for me as well. Your situation sounds very similar to mine. Many shots of imitrex a day, and no prevents helping me at this time. The only thing that used to stop my attacks was predisone, and for some reason it isn't working for me now. The one my doctor recommended to me would only go on the trigeminal nerve, I believe & they are only doing this in the Cleveland clinic. Yours sounds like it would cover more areas & maybe be even more effective. However, I am going to be doing this without health insurance or any financial aid, so I think your type would be out of reach for me. I understand the imitrex dilemma. Even though I wonder if my repeated use of it may possibly be causing more attacks, I am powerless to stop using it. I simply cannot deal with the pain of the attacks. I only use half a shot, but its still not ideal. O2 has never worked for me. Have you ever tried it? I do know it helps a lot of people if the flow rate is high enough & you use the right kind of mask. It may help you cut back on the imitrex & some of the extra hits a day you are getting. At least until your surgery is done. Please keep us informed about your stimulator & how it goes. I am very interested in knowing how it helps you. When is your surgery planned for? Good luck to you!

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.

...the surgery will likely be the week of April 16. Still waiting for the approval from my insurance co.

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've said this before, but I'll say it again...good luck, guys, and God be with you! I was right on the verge of shooting myself three years ago after battling the beast for over 3 decades. Surgery looked like a little less final solution, and we were considering how best to get to Italy for DBS. High rounds of prednisone, muchly increased dosages of verapamil, more effective O2 equipment and techniques and I'm back in the game. Switching between imitrex and migranal a couple times a week. Helps not become habituated to either. Anyway, we're prayin' for ya both. May pf days soon be in your field of view. Blessings. lance

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!

Thank you lance & Brooke. I am still waiting for a callback from my neuro who is trying to set something up. After speaking with Dr. Tepper, they now feel I should see a Dr. In Cleveland named Michael Stanton Hicks, who specializes in pain management. He is with the neurological restoration clinic. His specialty interests are in stimulators. I am hoping for a call today. Meanwhile I am still not getting relief from the massive pred dose or the verapamil & depakote & am using about 2 or 3 vials of imitrex a day plus sumatriptan tabs to help prevent a few ha's. I am exhausted & my life is awful atm  :'( 

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

You are much stronger than me! I can't fight through the pain, no matter what. I have to have the imitrex. Its such a dilemma. Thank you for your well wishes & I hope all goes well for your upcoming surgery. Please come back aftewards & tell us about it!  :)

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.

They are all part of the same team, I think. My doc spoke with Dr Tepper, and he recommended I go straight to the pain specialist, who has a special interest in neurostimulators. Well, thats what I've been told by someone, plus I looked him up. Its good to hear so many people saying good things about the cleveland group. I hope the DHE continues to work for you & you stay free of HA's  :)

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