The other thread seems to have gotten hijacked so I'm going to answer this question in detail here.

Every few months a newbie asks why members of this board are overwhelmingly against narcotics.  The question is so common that I wish that we had a sticky about it.  The short answer is that for most sufferers it's not worth the risk. There are safer and more effective treatments that don't carry the risks of narcotics. 

The long answer follows.

You're not going to find anyone here that's supportive of the idea that you use CH as an excuse to become an addict, which is what some newbies seem to expect.  We don't want people pretending to have CH as a drug seeking behavior ruining treatment for the rest of us. 

If you do have CH we want you to learn to manage your CH as best you can.  We want you to be proactive and not let CH take over your life.  We want you to be as happy as possible.  Addiction and long term happiness are mutually exclusive.

The idea that narcotics have no place at all or are not at all effective is incorrect.  There are many on this board (including myself) who carefully and quietly have included narcotics in their personal treatment plan.  Having said that however, even though I choose to use narcotics even I would stress that they should be used as an EMERGENCY or LAST RESORT treatment ONLY.

Those who are fervently against narcotic use are likely coming from one of four places: 

1) They haven't tried them but believe others who say they have no place
2) They have tried them and are among the majority whom narcotics do not help
3) They have tried them, they were effective temporarily but either through dependency or addiction (these are not the same) they lost effectiveness over time or otherwise had a detrimental effect on their quality of life making them regret using them in the first place
4) They've been a member of this board long enough that they've watched people like me go from seemingly responsible & stable to despondent addicts for whom narcotics no longer work, and they've seen in these people that the consequences of narcotic use are simply not worth it.

If, like most, you have episodic cluster headaches, 1-3 per night that do not otherwise impact your life,  there is probably no scenario in which narcotic treatment is ever worth it.  You know the pain will go away within about an hour even if you do nothing, and in a few more weeks the cycle will be over and you'll forget all about having CH until the next cycle.

If you need treatment, there are options like oxygen that you should try first.  It is cheaper, safer, has no issue with addiction, is natural and is effective for most.

Most non-narcotic treatments are not addictive, are more effective, and do not cause permanent detrimental changes to your brain.  Most other treatments do not detrimentally disrupt the quality of your life to the extent that narcotics do.

Narcotics are not very effective even if you're one of the minority of people for whom they help.  If you take them at the first sign of a headache and with some caffeine, the headache might be reduced from a Kip10 to a Kip 6.  You're still in serious pain, maybe equal to the worst pain you ever experienced before you had CH. 

If you're suicidal and nothing else works narcotics may be worth it, at least temporarily until you can find something that does work.  This is what is meant when people say it could potentially be a stopgap until you find a better treatment.

If you're chronic and averaging 8 or more hits a day, if you're disabled, if you've taken the more than 3 years that it takes to try everything and also rule out every other treatment as either not effective or not worth the side effects, that is the place at which it might be worth it to consider narcotics.  That's the point that even the foremost neurologists in the world are going to steer you towards pain management to try and give you the best life quality possible.

Even for members of this board, that is a rare place to be. At that point you probably know more about CH and treatments and trade offs than your neuro does.  At that point you can decide for yourself whether dependency is a choice you want to make for yourself or if (like me) narcotics are something you use only when your next step is the ER because you've had so many days of nonstop (45 minutes on, 45 minutes off) hits that you're suicidal and you need a break to regain some emotional equilibrium.

No one is going to deny that narcotics are a better option than suicide.  But if there's anything else left to try, there are probably better options than narcotics too. 

That is why no experienced member of this board is going to encourage the use of narcotics for anything other than as a last resort.

Katy

thanks for posting this katy. people need to know this. it is seldom mentioned that a few people on this board have been given narcs to deal with the extreme pain and now still have CH and are battling a drug addiction to boot.

I love cold, hard facts and logic. They're so damned hard to argue with. Nicely done.

Joe

Linda_Howell wrote on Aug 16^th, 2010 at 7:34pm:


Before I was diagnosed with CH I was given codeine. It did virtually nothing to kill the pain other than knocking me out after about an hour, but it did give me an addiction (not fun going through the withdrawals), constipation and it made me half asleep both mentally and physically for most of the day.

I for one don't want to touch them again.

O.K., I guess I am not following your last thought at all.

WHY would an addict who didn't have CH google most painful condition and come here to post???

Yes, that was exactly my point, Joe.  A few months working in a hospital and color me cynical.

Sorry, but I also just want to add that we, as a group, may need to consider tempering our reactions to people who post and include narcotics in their treatment plans. 

These people may not be abusers, but simply may be desperate or ignorant about what to do next.  This is a help and support site, people in terrible mental and physical pain come here for help and support.  We can inform and guide about appropriate treatments and guidelines for treatment, but we alienate some of the people who need help the most by immediately antagonizing and jumping on them.

Well, that being said, some of the posters I've seen in the last few months, definitely needed some jumping on, so I guess it's a case by case thing...   

I try to have empathy with people like him, in his mind, the ONLY thing that will stop this horrible pain is morphine and coke. Any other option, in his mind, means having horrible pain that no one else can ever understand.

An awful place to be, obviously, our goal is to educate people enough that they never find themselves there.

Joe

Linda_Howell wrote on Aug 17^th, 2010 at 1:17pm:


thats horrible 

All i would say in this matter is to read my thread "Dancing with the devil"Its in the general section locked on the top there
I really dont want anyone ANYONE go trough what i did there.

I really like this post, Katy... Much more balanced and calm than the reactions some have received regarding opioids for cluster headache in the past.

I think it's important for folks to differentiate between tolerance, dependence, and addiction.  I've seen in the past those things used interchangeably here.

Tolerance = The need for a higher dose of opioid (or narcotic) over time to achieve the same effect because your body has become used to the current dose.

Dependence = The body's physiologic need for the drug.  Your receptors change when you take opioids (narcotics) regularly.  Stopping them after being on them for prolonged periods of time leads to withdrawal symptoms.  This is not addiction.  This happens to everyone who takes opioids for an extended period of time.  It requires careful monitoring by a physician/health care provider to handle when weaning off of opioids in a slow and controlled manner.

Addiction = Psychological need for the drug where the person will do anything to get it, even illegal things.  They may do more subtle things, such as seeing different doctors and getting multiple prescriptions, borrowing drugs from friends and family, or escalating to buying narcotic drugs from those selling them on the street, which is extremely dangerous.  People who are addicted to opioids are no longer using them for pain control alone and are using them to treat a psychological need for the drug, craving, or a belief that they have to have it.

Pain management is definitely a last resort, but some folks find they need it for either CH or maybe for another condition.  It is important to always go to the same physician and pharmacy and follow all instructions.  Report any changes being noted.  If your physician prescribes pain management then fails to follow up properly, a new physician should be found.  The vast majority of cluster headache sufferers have reported no difference to their attacks with it, and then are still in pain while also feeling sleepy or other side effects of these medications.

The use of short-acting opioids (narcotics) is a very dangerous road to travel down in CH.  In all likelihood by the time these kick in, the headache is on its way out for most people.  Also, the frequency of cluster headache attacks makes using short-acting opioids not at all ideal.  Short-acting opioids should also rarely to never be used during a pain management plan.  If the pain isn't controlled, better for the physician to increase the dose of the long acting opioid rather than just slap a short acting over it.  This is what leads people down the path to trouble, as they start taking more and more and are on a roller coaster of the drug in their system.  I hate to see anyone use short acting opioids regularly for cluster headache or actually headaches of any kind unless on an absolute rescue basis as a one-time thing.

Carrie

Kevin,

It's a matter of stages....  Those who are addicted also have dependence and often tolerance...

Tolerance is usually associated with the fact that pain control is no longer happening at the current dose.  You are correct - people can lie, and then tolerance can get questioned.  But it's a well-studied phenomenon in chronic pain management - not just end of life pain.

Dependence is physiologic.  This does not mean that people may not have anxiety or other psychological issues when weaning off, but it has absolutely zilch to do with psychological craving.  That's where addiction incorporates dependence, not the other way around.  While a lot of people on chronic pain management regimens never seem to get off them, there are those that do, and they often go through brutal withdrawal.  Is it frustrating and anxiety provoking?  Most definitely.  Do they sometimes question whether or not they are ready and want to hang onto taking the med a bit longer?  Certainly can happen.  Does it mean they were addicted?  No... 

Addiction can incorporate all of the above, but is distinct.  Most people who become dependent on opioids for chronic pain are labeled incorrectly as "addicts" by lay people and even some practitioners.  Addiction is a psychiatric disease outlined by the DSM-IV.  People suffering from addiction still have a physiologic need for the drug as well, since they experience withdrawal, but also a psychologic need for it that rises above the meds usefulness for pain.  They may envision that they need more than they do or be taking it to get high or to treat emotional issues, but it's no longer solely for the reason of treating pain.  Addiction is marked by psychologic, and NOT physiologic, however - that is the distinction.  You aren't an addict if you are just physiologically dependent...

It's a major distinction, and most people screw it up, leading to upsetting stigma.

Thanks Katy, Svenn, and Carrie.  Well reasoned and said.  I can't agree more, nor do I have anything beyond that said to contribute.

Jerry