All of our experience tells us that this thread will die of exhaustion and nothing will change. Such a waste of energy!

The argument about narcotics deflects us from the core issue: Given the nature of CH, what are the best routes to relief and control?

Dealing with a disorder (CH) which might affect us for decades, any treatment should be useful, practical, and relatively safe.

Any treatments should be as effective as possible, given the range of treatments available.

We have general, long standing agreement, that narcotics are not very effective to abort CH pain, especially given our other options. We have broad, general agreement on safe meds which are effective, practical, and acceptable for the many years which we may have to use them.

We acknowledge that individual variation in response to various treatments is a burden for many people who must search, run multiple trials, before they find relief. But we don't challenge them for their attempts to find relief.

Once we have offered our best evidence about effective treatments, the judicious use of the delete key is not a bad step.

Troll??? Far from it man, try just a normal guy who happens to have a different opinion... And won't back down for what he believes.

Potter wrote on Jul 21^st, 2010 at 4:26pm:

Dear Thread...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

wimsey1 wrote on Jul 22^nd, 2010 at 7:27am:


  Thanks, I call it "Cat-Bird"   

-johnny- wrote on Jul 23^rd, 2010 at 11:07am:

They don't even do that very well. Not THIS type of pain, anyway.

I have had CH for 22 yrs.  O2 is my mainstay treatment.  Triptans work well for me, too.  I am generally wary of narcotics because there is a part of my family that addicts easily.  I am not subject to easy addiction, however.  I have had many operation in my life, and afterwards always just notice that "oh, I haven't needed any pain meds in a week and they are just siting in the drawer."

I agree that narcotics should not be the mainstay treatment for CH, and prescription of them for CH HAS to be carefully monitored by an MD because a significant % of folks are prone to addiction.  When I worked for touring bands many years ago, I saw folks become addicted to stuff in a matter of a few days.

I always look at treatments for any disease--including CH--in terms of efficacy for the individual: do they work for people, even at one end or the other of the Bell Curve?  Hence, I disapprove when people adamantly state: "narcotics never work for CH sufferers."  For instance, when I am in a modest cycle (no killers, infrequent attacks, the type of thing that 3-5 minutes at 7.5 lpm of O2 will always take care of) and a feel the shadow come on when I am a my daughter's school watching a play, I can pop a Vicodin and feel about 80% confident that I won't have to go to the car and grab my mobile oxygen in 15 minutes.  Note that this usage is for specific circumstances and based on years and years of  experience and is about me only.  Just as I have prescriptions of Relpax, Frova and Zomig, Verapamil, Topomax, Indomethacin and Prednison (which I use about once a year), I NEVER leave home without little box of Vicodin, Demoral and Oxycontin.  How often do I use them?  Not very.  I am susceptible to rebound with all of them, for one.  They all keep me awake if I take them after 9 pm, for another.  And I only use them in two circumstances really, situations similar to the one I described above and when a killer is so far out of control + the Red Bull treatment is either not available to me or has not worked + I am not in a narcotic rebound situation + it is not after 9 pm.  Thus a prescription for #30 10 mg Demoral, even in a terrible cycle tends to last me 2-3-4 months; #30 10 mg Oxycontin tends to last even longer as I take it less frequently due to its bad effects on my digestive system.  In terms of actual use, I might do 2, 3 or 4 days without using either Demerol or Oxycontin, then take 3 or 4 of one or the other to battle a 10+ CH.  Vicodin I use a bit more of.  I get bottles of 60, that tend to last about 2-3 months during a cycle, most of the use being in the early part.

BTW, when I take "big gun" narcotics when I have a 10+ CH, as many would imagine, sometimes it does not really knock out the pain (sometimes it does in 20-25 minutes), but rather just make me not care very much, or as much.

BTW, I see my neuro of 22 years every few weeks and she knows everything about my narcotic use, including that my brother is an addict.  (He was sober for 27 years, then started using again after a neck operation 7 years ago.)

Finally, my cycles can last 6 or even 8 months as I am a chronic, acute CH person.  I recently had 9 months pain free which was great (and good for my stomach, too).

I hope this presentation provides some insight to one CH sufferers' long time non-addictive use of narcotics for occasional use in CH treatment.

Hi,

Narcotics aren't always terrible, they just tend to be the worst of many possible options.  I sometimes use them too, and I answered why they should be the last choice here (edited to delete broken link).  I also  bumped the thread so you can find it easier.

Katy

Good post, Joe.

I note with appreciation the posts by Katy & Joe, both of which showed understanding and tolerance.

thee reptile