I have spent alot of hours doing research here and i agree with some things and i also disagree with some.But all i want to say is the people that can say oxycontin does not work,well you are wrong!!! My DR told me to do this and it worked!!! When i did this i was in my peak and was not on any preventatives.

Take 2 at bedtime and you will not wake up with any pain.These 2 pills will last for 8 hrs.Therefore if a headache kicks in the Oxycontin is already working and you are good to go. :D :D

And, if you keep doing it, you can find yourself needing more and more, until one day you wake up in a dumpster with your car keys up your wazoo.

Highly, highly addictive, my friend. A long-acting triptan like Amerge or Frova will do the same thing without opiates.

Can anybody please post that thread with the one member here with that horror story about getting addicted to opiates to mask his cluster pain.  I need to save that somewhere so I can post it on this kind of thread.

I certainly will not argue with you. I would encourage you to do more research on your own as to the mechanisms of our pain, the preventative treatments and abortive treatments available. Having done that, I'm hoping you realize how critical it is for you to locate a headache specialist.

I have no doubt oxycontin will relieve pain, I'm deeply concerned about the high probability for addiction with a condition like ours which is hardly a "one and done" short term condition.

Please don't let this turn into a fight where one side has to be right and one side has to be wrong. A sense of pride gets aroused at that point and no matter what one learns they can never change their opinion. This is too big an issue to be reduced to an internet pissing match.

Please, you owe it to yourself to get educated and do what's best for you.

Joe

Brew wrote on Apr 8^th, 2010 at 10:25am:

And, if you keep doing it, you can find yourself needing more and more, until one day you wake up in a dumpster with your car keys up your wazoo. Highly, highly addictive, my friend. A long-acting triptan like Amerge or Frova will do the same thing without opiates.

   That happened to me when I was being a junkie.  Thank god I didn't own a car.

                Potter

Joe is quite on track: with Cluster we are working with a disorder which may be with us for decades. There are enough safe, effective meds to control an attack and prevent them, that the risk of long term use of any addictive med is very rarely needed.

Even 40-years go, Dr. Seymour Diamond, a leading headche doc at that time, admitted using IV morphine in desperate sitations--but even in that age of almost no alternatives, he would not yield to long term use.

The best medical practice is aimed at: long term prevention of attacks and safe short term aborting of attacks (by direct treatment of the source of the pain). Pain meds do neither.

See you in detox.

I'll be the guy on the other side of the desk.

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This what you're looking for, Chad?

It's one hell of a story!

Jackie wrote on Apr 8^th, 2010 at 11:38am:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE This what you're looking for, Chad? It's one hell of a story!

Thanks Jackie, that's it alright.

I think our other Chad needs to read this.

This story touched me eventhough I have never done opiates to treat clusters.  I think any clusterhead using opiates should read this and let it sink in.

Chad from MN, why would you take something so harmful and addictive and deadly, when you can take advantage of the wealth of medical knowledge from those of us here who understand your CH pain moreso than anybody else?

You might consider looking at the link I posted below, displaying doctors who are experienced treating those with CH's and have been recommended by CH patients. 
Good Luck!

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Ok first let me say that everyone is different the way they fight the clusters this is my story and Remember its just my way of dealing with the chronic clusters pain I have ........................................................
Ok 55 year old man had clusters (chronic since Nov. 1999) (before 17 years fall and spring only). First I must say after 67 different meds in many combo's for 16 years. Even had my trigeminal nerve cut at the Mayo Clinc  in Minn. in May of 2002 (which I got a little over 4 months releif only to come back full force).
Ok this is what I take for my clusters right now since 2006. I wear a fentanyl 75/mcg/hr and for the bad times I take a 10mg morphine shot. I am only allowed 12 per month and can take 3 in a 24 hour period (which has happened about 5 times since 2006). I get these shots refilled about every 45 to 50 days. So I dont go every 30 days & refill it to have more here than I really need. Now PLEASE let me say that EVERYONE is different how they get thur the pain. I have two  O2 tanks with proper equipment but sorry to say dont work for me BUT there are so many people is has worked well for.  And I have read about Svenn's bad dealing with the morphine. My wife is a CNA and trust me she would tell me if I was hooked on it. Before the pain patch and shots I used stadol and I abused that med loved the rush it gave me so after 3-4 months I took myself off it cause I know it was wrong. I also take meds for depression and bipolar disorder. Plus meds for acid reflex and high cholesterol. I am not telling everyone about my meds I take to stir up any trouble just thought I would let everyone know that its worked for me. 15 to 20 minutes after a shot I can do anything I need to do like drive , mow the yard , house work etc without any problems. Well thats all I have to say about this.
Terry 

Chad from MN,

I'll not argue with you either.  YOu are a big boy now, and you have to make your own decisions.  I'm just going to give you a bit of my experience, although minor compared to Svenn's. 

When I was diagnosed over 30 years ago nobody knew anything about CH.  All my Dr knew is that his sister had them and they hurt like a son of a gun.  He promptly put me on Fiorinal, and another drug that was a derivitive of morphine, but supposedly not as addictive.  I say supposedly.  At the time I was working in a textile bleachery, operating equipment that required paying close attention.  There were times I would drive myself to work so stoned I couldn't read my own time card.  It was rather embarressing to have to have someone else confirm it was mine, so I memorized what slot it was in.  It didn't really kill the pain, I just didn't care!  It is by the grace of God I'm still alive, and I mean that literally.  Why mi wife didn't leave me I have no idea, because I was not worth living with.  Was I addicted?  I don't know, but I was for sure dependent on them, and I had ratcheted up the amount I needed to get the little relief I did get.  Realizing what I was getting in to I quit using them totally cold turkey.  It was HARD to do, but I knew I had to do it.  Interestingly the cycle ended about the same time.  Coincidence?  I don't know, but I do know I have used Narcs or Opiates only a handful of times since then, and then only ONE per incidence, including after a root-canal without anaesthetic, a broken ankle, a broken toe, and more.

You make your own decision.  It is your life, and you have to lead it the way you think best, but I would think about it long and hard when not under the influence of the Oxy.

Jerry

I had a girlfriend from 2001 to 2004 that had degenerative arthritis of the neck and spine.  She was prescribed Oxycontin.  Take 1 for pain, became 2.  Two became 3.  Time for a 30 day refill after only 3 weeks.  And so on.  She became not only dependant, but also addicted.  Within 4 months time, her life was opposite of near perfect it once was, despite her neck/spine.  She became a walking zombie when she had enough energy to get out of bed.  She had gotten fired from her job that she used to have an absolute passion for, Child Protective Services intervened due to her not getting her daughter to school/feeding meals/grooming/etc. resulting in her 8 yr old daughter taken from her due to parental neglect, she lost all care in the world to get out of bed and try to enjoy things in her life she was passionate about, not interested in opening the blinds to enjoy sunshine, etc.  She went from a beauty school nail technician with a very loyal clientele of 17 yrs who all left her because she didn't show up for work, went from a fashion diva to not caring if she shaved her legs/arms and barely took a bath, she became a mess.  I called her mother out of state to intervene as I had had enough.  "You can't help somebody who does not want to help themself".  Her mother flew across country and checked her into rehab and I never heard from her again.  Too bad because this was a woman I loved very much, even was considering marriage.  Oxycontin is extremely addictive and destroys lives!   :-X

I, personally thank those of you who have shared your horror stories and negative feelings towards these  kinds of drugs.  I know it wasn't easy for Svenn or for you Jerry.

I find it VERY interesting that Chad chose to put a smiley face in front of his entire thread. 

In 2003, my neighbor across the street had surgery on his spine.  He was prescribed Oxycontin.  His wife reported that over a short 6 weeks time he had become dependent on the pills, as his tolerance level was requiring more pills to reduce the pain, as compared to less amount of pills that previously worked. 

One morning I walked outside my house to go to work and noticed the ambulance, police and fire department all parked across the street.  John Graham, age 37, father of 3 small children, husband, brother, son, etc...my neighbor had overdosed on Oxycontin and died that day.

The family story is that because he was such a large man and because his tolerance/dependence levels changed; he thought it would be ok to take 1 extra pill on occasion...that occasion was the morning I just described, which ended his life! :-X

Well Well.Its not all about getting addicted, The BUZZ yea i can see how it is addicting but no.Im a very strong mined german and no i would not let that happen!!!.I have been through alot and i know what im doing!!!! Beleive me and i respect all the support but no i will never get hooked like Sven did!!!!!!!!! I just do it while im in my phase. Thats All

Go Twins!!!!!!!!!!!!!!!!!!!!

Love ya alllll!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Chad from mn wrote on Apr 11^th, 2010 at 10:34pm:

Well Well.Its not all about getting addicted, The BUZZ yea i can see how it is addicting but no.Im a very strong mined german and no i would not let that happen!!!.I have been through alot and i know what im doing!!!! Beleive me and i respect all the support but no i will never get hooked like Sven did!!!!!!!!! I just do it while im in my phase. Thats All Go Twins!!!!!!!!!!!!!!!!!!!! Love ya alllll!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My former girlfriend was also a strong minded German!  And my dead neighbor was a strong minded German also!!

Chad, my friend, you have no idea how many times I heard a line like that while I worked with the Pacific Garden Mission in Chicago for 7 years.  It always happens to the other guy.

Hoping for the best my friend.

Jerry

Chad in MN,
Please think long and hard before relying on Oxy to control your pain. I totally understand the desire to find something ANYTHING that will bring relief but I just dont know if the risks are worth it.
I have seen that drug destroy many good, strong people. None of who thought they would become dependent. Be very careful.
Good luck to you.

Those who take opiates are completely missing the point here.  Yes, opiates will definitely take care of the pain, but when the pain comes back you take another dose and then the pain comes back again and guess what, you take another dose.  Before you know it you need twice that dose to do that same thing it did in the beginning and yada, yada, yada. 
Get the point here.  That's called addiction and you can deny it all you want, but you're setting yourself up for disaster.  The triptans drugs alone attack the
problem without the buzz.  There is nothing better than aborting a hit with 2mg worth of shot in less than 5 minutes or even better than that, sucking down some high flow oxygen where you don't need to take in ANY drugs at all.  If you take an opiate at onset (unless you're injecting), you will NOT get relief as fast as those two I just mentioned.

Whatever works to help one's pain is what will be supported around here.

People are just looking out for you not developing further pain in another area of life.

the reality is when one deals with opiates, you will at some point develop a dependence.
It has nothing to do with being strong minded or not.
It has to do with our body's metabolism, biochemistry and the plain simple science dealing with habituation.
you will be come dependent. This doesn't mean you are a junkie or a bad person.

For the vast majority of people there are more effective treatments with less damaging side effects.

For people like Terry and some others not named in the thread, there is few alternatives left.

Just make an informed decision and research but try not to act hastily.

good luck

Quote:

no i would not let that happen!!!.I have been through alot and i know what im doing!!!! Beleive me and i respect all the support but no i will never get hooked like Sven did!!!!!!!!! I just do it while im in my phase. Thats All

Classic statements from those who eventually experianced the wonders of detox. 

Svenn is the most stubborn, strong-minded Norwegian I've ever met.  He kept telling himself he was fine til he could no longer hide it from even himself. 

Gang! (ref. #15)  In 30-yrs of being a mental health counselor, I can never recall such a clear, sharp statement of denial which confirms, in my mind, a loss of capacity for judgment and, therefore, capacity for self-protection.

Bottom line: might as well stop your efforts to convince him.

In my opinion, this thread was started similar to a TROLL for attention.  The reason why I write this is because Chad from MN is NOT ignorant, he knows better as he has written in some of his recent previous post replies to others. 

I looked at this Newbies' "last 40 recent posts" (less than 30) from his profile and he has replied to others stating that his Verapamil works great!  Redbull actually killed an attack!  and oxygen is wonderful.  Hmmmm.  If all this is working, why the Oxycontin interest?

Here's why...in many of his posts, he makes references to illegal drug terms with attached smiley faces....crack rock, snorting pills, smoking pills, cooking and shooting.  Form your own conclusion, yet? 

"You can't help somebody if they don't want to help themself!"

LasVagas' data sure tastes like he has the correct understanding of what is going on.

Whether you like his analysis or mine--the response is the same:  "Bottom line: might as well stop your efforts to convince him."

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.

I'm posting here not because my husband got hooked on anything, but because of what he did twice while getting hit hard.  This was before he had O2.

He had a few pain meds that were prescribed and some over-the-counter that he had been taking somewhat successfully as his cycle ramped up.

Anyway, he was hurting so bad that he would dose on one of them, then take more thinking that would help, then take something different thinking that would help, then take more of that because it had helped in the past and so on.

Bottom line, he was lucky and now knows that IS NOT how to handle a hit, but was so desperate at that point that he just did it.  Even though he realizes what happened (and what could have happened)and says he won't do it again, the meds are nowhere to be found.

I know the veterans already know this, but this is for people that might be reading that are just starting on this journey.  I learned a tremendous amount while reading this site, but never ran across this type of situation, although I'm sure it has happened many times.

Wishing everyone a pf day...

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

MikeS wrote on Apr 13^th, 2010 at 8:46pm:

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 got time.

      Potter

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

YOU didn't get the call one cold morning, around 5am.....I thought I was gonna have a good chat with my friend, Svenn, good-naturedly chastise him for calling so early, till he said things that made my blood freeze in my veins....a million miles away, in Norway, he told me, he had to end his life, he could no longer live in denial, his wife deserved more than this, and he was prepared-and had plenty of meds to succeed.
MANY people helped that day, jumped in and even found a neighbor to visit him....I know he was serious. I know it took a LOT to convince him to get help. When I saw him on Skype, I was in shock! If his attempt at suicide didn't succeed, it wouldn't be long before the Oxy did it!
YES, Chad, you have a right to do whatever you need to maintain life while dealing with CH......but what do YOU really want?
Denial is NOT a way of dealing....that's hiding from the problem at hand, and, believe me, OXY IS a problem.

Funny, when Drs prescribed OXY for my Mother's pain caused by medical problems, I knew her time on earth was short. For many years now, OXY has ONLY been prescribed for the terminally ill. Are YOU terminal???? REALLY?
That's of course, just my opinion. Please stay well, and stand up to this insidious disease. There are MANY here who fight daily. They are strong, smart and still have a life to enjoy. Please seek other methods..because you can!

Cathi :-?

Quote:

"Opiate therapy" is far different from taking opiates for pain relief. It would take several pages to explain even the basic premise.

'Love to read THAT one.

MikeS wrote on Apr 13^th, 2010 at 8:46pm:

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

Remember that some people on this forum know a lot about science, medication, and addiction.  It might even be their field, though a professional would never tell you on this type of communication.  It would be courageous of you to find out some facts about what you are stating from a qualified professional, though I am guessing you won't...at least for now.  In time, you may have to.  I am wishing you insight and good luck! 

You know the old saying..."You can't see the forest for the trees!" 

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

MikeS...The majority of us are fairly opened minded.  We would love to read the several pages you mentioned.   Please send us a link or something. You seemed so adament about how this is a good thing, I'm certain you would love to put it up here. 


Jerry...I don't mean to disagree with you because I would hate for you and I to be at odds, but the Methadone treatment is as bad..if not worse than the Heroin addiction.  Only difference is that it is not illegal and the person knows exactly what he is getting as opposed to street Heroin.

Getting off of Methadone is HARD and is exactly the same,  physically as Heroin.  It is as expensive and one is tied to the umbilical cord of never being able to take a week-end vacation, etc.   I know this because my son...well you know... :'(

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.........

Thank you for agreeing with me Marc.  I HAVE seen it all first-hand and narcotics withdrawal of any kind is heart-breaking.  I know for a fact that Svenns story was very hard for him to not only go through...but to actually write it down in the hopes that someone else would be saved from what he went through because his CH's were intractable.   

This damnable subject comes up on this site at least every 6 weeks and almost always from someone who insists that it is the ONLY way to go. 

    I don't believe in "only"

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

Opiate therapy is done by a professional, The Dr uses it only if other methods have been tried and exhausted. You are tested and tested during the process. I have to be tested monthly for 3 years for reflex changes and cognitive skills. I have gone off methadone 3 times for several months. If you follow the treatment just as prescribed (for me anyways) there was no problem stopping the meds. If it it used properly withdrawal is not a a big issue for many. I didn't go looking for this. I refused to try for a couple years, however not being able to work, drive and enjoy much of anything ,not to mention the large number of nasty side effects I had with other meds, motivated me to try something new.It helped me and my wife and children more consistently then previous treatments. Just wanted to let others know that perhaps for someone else it may work MikeS

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

take it from me OC's are the worst thing for you. you are a heroin addict at this point, real recognize real.....ive been there and done that and made all the excusses. you need to find something other than opiates...youre gonna get addicted if you arent already. PLEASE find another way to deal with them...i was on the shit for 20 years and almost died..i was on 320 a day..80mg 3x a day...with fentnly. i use decadron and predislone for a month and it has broken my last cycle in a month.

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