I have suffered CH for more then 20 years now. I have been Chronic for about 15 years. I have had migraines most of my life, however they were only moderately painful and never caused me to miss work. I started getting CH attacks when I was 33 years old, had 7 children and fortunately at GREAT Wife.  After 3 years of episodic attacks (3-4 weeks a year) my cycles started coming after 6 months, then 3 then they never stopped. I was chronic.   

    After my 3rd Neuro I was in luck. Dr. Savia my Neuro during 10 years of my CH was a very organized and methodical Dr. He took the time to explain each treatment and not only wrote exactly what was done at each Appt but also voice recorded some during and after the visit and transcribed each Appt. We tried Calc. channel blockers, Sansert, Anti seizure meds, Lithium, Prednisone for short bursts, Neurontin, d flow up to 30 lpm),     We did IV DHE, Trigger point injections of Local lidocaine which my wife learned to do. Monthly steroids in the trigger points from the Dr., , Zornif Topomax and many others. Side effects were many and some were serious. O2 which would stop my first attack, however within 2 hrs I would get an attack that O2 helped with about 30% of the time, any other attacks during the day would never respond.(I had someone from the O2 company, who was a friend whose company also did our welding O2), help me configure a mask that would flow up to 30 lpm. Imitrex never helped with a cluster. However Imitrex Injections were great for my migraines After several years of use I became allergic to promethazine and compazine. (I got something called  Tardic Dyskinesia (spelling?) and was in the hospital for a week and I have no memory of anything past the time I was admitted). The above meds did help quit a bit. I could get through most nights without an attack and at my best I would get maybe 16 Attacks a week. The common problem was that even after titrating me to the max dose, I became resistant to the meds that did help. 

     After a  4 week inpatient stay at Diamond Headache clinic they told me that the best I could hope for was maybe a 50% reduction in attacks. They said that even though Clusters & Migraines have little in common they were somehow indirectly feeding off each other making it extremely difficult
to come up with a decent way to help me. 

   Ok now to the opiate treatments. Because my Neuro was such a perfectionist with my records he definitely saw a pattern that clearly showed a Decent response to opiates and even more so Methadone. At Diamond they would give me a Doliphin (methadone) injection which really helped with my attacks. After the 2nd week I found out that dolaphine was a different name for methadone.

  I was now ready to try surgery to freeze a nerve (Trigeminal?) During the first part of the surgery I was to receive stimulation of different nerves or areas of nerves to pinpoint where to go. Upon being wheeled in to the operating room I got a full blown Cluster. The surgeon that brought me in had never actually seen a bad CH.  I couldn't proceed with the surgery without being awake and holding very still while they needed to trigger the nerve receiving the pain from the Ch. This Surgeon was part of a pain clinic that did opiate/methadone
therapy. After getting my records (about a 4 inch stack) they thought that because other methods had not been effective over a long period of time I would make a good candidate for opiate or methadone therapy.  By this time I had read so much against narcotics that I said "No way". He asked me to come back in to discuss other  options. I brought my wife with me.  After a huge a[size=10][/size]mount of info on correctly prescribing and using opiates for long term pain and as much research and reading I could find on the subject my wife suggested I try it.  She was instantly a partner helping and encouraging me every step of the way.

        Dr. Webster (Anesthesiologist who practises  and operates a fairly large clinic devoted only the research in Pain management) had seen several of my attacks and had helped with pain management on several Ch patients. He was only willing to take me as a patient because of the well organized records I had along with the fact that I had tried other types of meds for so long as to show pain management was all I had left.       Dr. Webster had a lot more to offer me then just pain management. He said if I would stay with him and follow exactly what was prescribed he thought I could possibly have far fewer attacks with much less pains. He said if no allergic reactions showed up my side effects would be minimal. After blood and urine test to verify what meds I was using and no illegal drugs. It started.
 
   After 7 months of very very slowly titrating methadone to a certain level, using morphine for breakthrough,  It happened! my CH attacks went from at least 3 a day to sometimes less then 1 each day. Not only did the frequency dramatically decrease, they would come on much slower, with enough time to go home from work (I only live 5 minutes away) or drive for about 20 minutes before the pain was bad enough to have to stop driving. After a year I could work 20-30 hrs a week. I do get some bad days where I miss work a couple days. I also was required to keep a consistant schedule of sleeping and eating times. starting my meds at 5 am and getting out of bed and doing some light work for a couple hours.   The unexpected for me was the very minimal side effects. I never felt high because of the very gradual titrating of my meds. The biggest problem I had was forgetting doses.

      The last 12 months have been very good to me. When I went chronic with my Ch's I noticed a few unexpected changes. One of these was that I could no longer eat anything spicy without a bit of swelling of my tongue and very uncomfortable burning, as if I had eaten a habinero pepper. Even the mildest salsa and ketchup was enough. I loved and ate spicy food all the time prior. About 9 months ago I could easily tolerate somewhat spicy food again and it just kept getting better. I also noticed that my methadone was making me tired. (Something I had never noticed before because of the slow titration the Dr. used). So I went down on the dose waited a few days then went down a little more waited, until I didn't feel tired. If I went down even more after 10 days or so the number of Ch attacks increased until I went back up a little on my dose. Every 20-25 days it would happen again. I was only taking  a little over 30% of what I was taking 7 months earlier. Going down on the methadone gave me some side effects. The worst was cramping of my legs especially my thighs and I was  becoming a bit anxious and moody. I had virtually no urge to take any meds for the withdrawal. My Dr. said that was only possible since I had never exceeded my dosage without his OK therefore keeping the Euphoria at bay.I started using effexor and after 10 weeks I was at dosage my Dr. wanted me to be on. three days latter I didn't get a Ch and 100 days later I still haven't had one. I am off my methadone and haven't used any other narcotics (used for breakthrough) since I have had no Ch.

   I was very fortunate and/or blessed (take your pick). I had a wife who has some medical training, tons of common sense and a willingness to stand by me through it all. I can never repay her. I do try however. I do all the laundry (after she trusted me to? lol), The dishes and anything else I think will make her life a little more pleasant. (Sorry I don't mean to say I am some great kind of husband, I am just saying how much I truly appreciate her).

  Am I cured? maybe not, It has been over 15 years that I have gone any more then 5-6 days without a Ch. And only had 5-6 days in a row Ch free 2-3 times. Did the methadone and opiates cure me? most likely not. Would I use them again? Yes.

Your experience runs counter to the experience of many here.  Not only my own, but this in particular:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Svenn hasn't had a hit since he quit taking narcotics two years ago.

Nevertheless, you give a clear account of what is obviously a very different experience.  It's a fine example of what has been said here, many times--something that works for most people won't necessarily work for everyone.  The flip side, of course, is that something that works for very few people will sometimes work for someone in particular.

I know that some threads here have been very anti-narcotic, and have drawn some fire.  I doubt that will be the case this time, since your use of narcotics was obviously carefully controlled, planned and executed. 

Glad to hear that it worked for you.

Best wishes,

George   

I'm one who normally will jump all over someone advocating Opiate or Narcotic use.  I'm one who was prescribed both early on in my CH experience, but mine was not even remotely controlled or thought out, and I fought addiction, with NO relief.

Your case however is different.  You obviously have done your homework and kept close records to know what did and did not work.  You've also had the support of a knowledgeable and caring wife who helped keep it in order.  Plus, you had the benefit of a couple of Drs that far exceed the norm.  In fact, if there was sainthood for Drs I wold recommend them based on your testimony.  You have not just gone to the Dr and said give me something to make me quit hurting, I don't care what it is. 

Thank you for sharing a success story that is very rare on here, especially using the regimen you are using.

May it never end!

Jerry

Thanks so much for all the support. Sorry it took me so long to reply. I went to the hospital with a heart rate (at rest) of 210. I was concerned it was due to my quitting some of my meds too faest. It appears, however that I had a second nerve in my heart that would occasionally cause an extra beat. If it occurred at just the right time it would cause my heart to go into SVT. This one lasted a couple days. They finally had to sedate me and shock my heart to stop the high rate. I went to a heart rhythm Dr. who did a procedure with 3 cathadors up to my heart to find and do an ablation on the nerve. Wow what a difference in my energy level. I felt better the next day, better then I had since my clusters. I feel far more blessed then I deserve to. Thanks again and may we all have a good Thanksgiving. MikeS.

DAMNN!!! A resting pulse rate of 210, must have felt like a sewing machine on crack pounding in your chest.  Glad to hear it was "fixable'! Hopefully, your "tests" are done for a while, that's quite a wringer you got put through, glad you made it to the other side.

Joe