Addicts survive by arguing, denying, and manipulating for their drug of choice.  Sadly, they come to believe what they say.  No one can stop that and it is nonconstructive to have a discussion with someone while they are using.   It is up to them and unfortunately, it is usually not until they hit rock bottom...maybe even several times if the first times weren't at the bottom.

Opiate therapy? Can it work? What is it? side effects?

I am a chronic Cluster sufferer, I started out getting clusters 2-3 weeks a year for a few years. Then they never went away. My CHs have always lasted 3 hours. Unmedicated I would get an average of 4 daily occaisonaly getting 5 or 6 attacks. I have posted mostly on the old message board, my history is more detailed there. I had some success with the usual meds, good with O2 for a while. To keep this short here goes.

  Opiate therapy (I use methadone) with a Dr. that really knows how to do it, for me, was and still is the most successful method. Soon I could work again. The side effects were and are almost non-existent. All the negative stuff on pain meds I have read on this board is often true. However none of it is about opiate therapy it is about taking opiates for pain relief, which is not opiate therapy.
   "Opiate therapy" is far different from taking opiates for pain relief. It would take several pages to explain even the basic premise. 
   We gripe about how closed minded non CH sufferers are, how they don't have a clue of what we go through. We state that CHs are complex and that what works for one may not work for another.  MikeS

I'm with Potter on this one.  I have plenty of time to read Mike.  Let it rip.

Quote:


'Love to read THAT one.

Opiate therapy with Methadone is a totally different animal than use of Oxy or other such pain meds.  For one thing Methadone is used as a replacement for opiates during drug interventions.  It can be used to wean a person off of heroin for instance, and doesn't tend to have the spiraling dependency tied with it, at least not to the same extent. 

Jerry

Potter: Me too - I have yet to see a really good case unless it was like Cathi's "end of life" example. An awful lot of folks have tried to convince that they didn't have a problem..........

Cathi: Yep. Svenn's morphine story is soooooo valuable as a lesson. (I continue to applaud him for sharing it in detail)

Luinda: I have agree about Methadone withdrawal pain. Haven't been there myself, but the case I'm directly familiar with looked about as bad as smack to me.

Guess I'm done parroting what you fine people have already artfully said.........

And we shouldn't have a problem discussing it here on this board even more often if it stops even ONE person from tumbling down that rabbit hole.

I respect your perseverance on this - and other issues.

Marc

Linda,

I bow to your experience, and I'm sorry.  I have not had first hand experience with dealing with anyone using methadone to get off of heroin, just third hand, so I was giving it to much credit. 

Opiate therapy on the other hand used on a VERY limited basis and with follow-up monitoring as Mike has described slightly can have good results.  It is not something to be entered into lightly.  In fact I would put ONSI or DBS ahead of it on my list if it came to that.  What Mike is talking about is a far cry from Chad's original argument.

Jerry

Just an FYI on the opiate(methadone) therapy. One of the more important attributes of the method my Dr. uses is as follows: After blood and urine tests to verify what if any meds I use. I agree to any random test they ask for. I go in every week for 3 months, every 2 weeks for 6 months. I start on a very low dose of methadone daily (4x). Reflexes are checked and cognitive tests are given. Very slowly they titrate the methadone to a higher level. You get no relief from this at first. I used O2 which worked for the first and 60% for the next after that no relief was felt (I was getting at least 4 attacks each day each lasting 3 hours) after 6 months the number of attacks each day started going down. By 1 year I was down to maybe 10-12 attacks a week, occasionally skipping days. I know opiates are supposed to prevent attacks, however that is what happened and what the Dr. hoped for. He explained to me that he has seen with a small % of chronic CH patients there seemed to be a slight variance from the "typical" (if there is such a thing) Ch patient. He explained (however in more technical terms) that sometimes the neuroreceptors would cross paths or misroute causing the CH attacks. He said since I didnt respond at all to imitrex that I might fall into this type. I get migraines for for which imitrex can work wonders for. Not so for CH. He said since opiates and methadone work on some of the receptors that CH may also have a link with, some patients respond to this by the meds "affecting these receptors in such a way as to prevent attacks".
   Yes there is a temptation to take more of the meds for perhaps more relief, however following the program strictly is the only way it stays consistent. After a year you get 30 days of meds and return in 4 weeks. You have to bring in any meds not used. Well they know that you should have 2 days left over but they don't tell you that. If you don't bring any meds back you very likely will be dropped as a patient. One of my problems has always been that when I get busy I forget a dose. If you forget ands its more than 1 hour after you just wait until the next dose. I have always returned with more then a few days of meds left over, so I was considered a trusted patient. The way you go so slowly up on the initial dose is that that I have never felt and pleasure from the meds or for that matter much of anything other then a reduced number of attacks. If I ever start to feel tired from the meds than I need less and have reduced the meds several times and have never needed to go to the higher dose again. Again for me and my family it has been a blessing. It was hard to be patient with the process at first. However the end results have been good. Any way that is the difference in the way you take the meds that makes opiate therapy different then just taking it to reduce pain. I understand that this goes against the idea that opiates can't prevent pain. Of course that is still true , but for me it has and does prevent attacks. To verify that the meds are the actual reason, I have been asked to go off methadone 3 times. It takes about 3 weeks of reducing dose slowing and what would be considered withdrawals was just a restless day or 2. My CH took about 2 1/2 months to return to full on attacks. Then after that about 3 months to get reasonable control again.  Thanks for reading MikeS