Katherinecm
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Des Moines, IA, USA
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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
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