Look, I'm no doctor, but this ketamine thing kinda scares me. It's an anaesthetic, sure, but it also has post-use dissociative amnesiac qualities. I suppose forgettin' the cycle and pain is a good thing, but....There are so many better treatments available. Have you read much here, and have you tried any of what we recommend? Things like O2 used properly, verapamil, lithium, topamax, imitrex, melatonin, psilocybin, energy drinks...the list goes on. I hope this works for you, but a good preventative coupled with less potentially harmful abortives is a road you might consider. God bless! lance

We now have several decades of experience with a variety of meds which have proven helpful for CH. The safety and track records are well known.

It does not make sense to me to start using treatments which do not have this record of success and safety--unless as a last resort.

Neither surgery nor pain meds fit into broadly accepted range of effective treatments. We do have, sadly, studies which show that many docs, even neurologists, lack the training/skill/experience in treating CH (because we are such a minor % of any doc's practice).
Therefore, we encourage seeking a headache specialist, if you have this option.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Agostino Leyre wrote on Sep 28^th, 2010 at 9:38am:


I agree.

In allmost all cases of CH pain management, clinics work to hide the pain but seldom look at the causes. Often times their efforts in treating pain leads to greater difficulties and addictions around CH. Often it gets to the point of not caring if you have CH or a life. But you still have CH. just no life.

That said; Ketamine, PCP, Angel dust, DXM (the active ingredient in many cough syrups used here by a lot of folks) Have been used with some success to combat CH.
Ketamine, or special K on the street, is supposedly non addictive. Said to work by separating the brain from external stimuli, Dissociative.

I was given Ket in the 80s but had no success. I heard of another who had great success. Stopped his cycle cold.
I would be interested to hear your results after the 72 hours Rep. If no results its certainly not worth further efforts.

Thanks to everyone for your responses.  I am no rookie at this and would have laid out my experience had I had the time to do so in my first post.  First, I am on topomax, verapamil and a strong anti-inflammatory (indomethacin) now.  This combo has worked in the past.  Quite well, in fact.  I am using O2--an amazing amount (an H tank every couple of days).  And it works--some of the time.  But other than from about 9 am until maybe noon or 1 pm, I am under seige, all day every day.   Sometimes uncontrollable, unrelenting "if I had a gun I might end it" pain, and other times attacks that I can abort with 10 minutes of 7.5 lpm O2.  As for this Neuro: my mother and sister are neiros so I have very good resources to discuss all this with (note:their specialties are in speech production and brain injuries, but they are certainly quite helpful), and of the several I spoke with before I made an appnt w/ her, she was the one who seemed (and it turned out to be true) the one who (a) had the most experience w/ CH, and (b) the most ideas to treat that I had not used before.  I could have gone with a guy named Kudrow, who has done the most research on the subject of CH anyone I am aware of, and whose father was the first to find that O2 works on clusters back in the 70's (and whose sisters is the actress, Lisa), but I have seen him in the past and he limits treatment to some standard drugs and O2, all of which I have tried and, as one person mentioned seeing this neiro was as a LAST RESORT.  Finally, the amount of Ketamine I am taking is so far below a recreational amount or what can create hallucinations or dissociative thoughts, that I am not the least bit concerned. (Just to be on the safe side, the neiro gave me a few diazpan, although of the dozens of people she has treated this way none has ever reported allucinations or dissociative thoughts.)

Again, thank you for you helpful ideas, but as I said, I am no rookie.  I have used each of these and all with success to one degree or another (note: I would appreciate it if someone would give me an idea as to where I can get some seeds right now as the two places I have bought from have both told me that they are out until the next harvest and one of them said it tried 4 other vendors to get some stock w/ no success).

That is not to say I am closed to new ideas.  For example, I haven't used librium in about 17 years or so, and thus may give it a try, again, soon. 

BTW:  Although I won't be able to tell for at least another 24 hrs, I am having my best best in some time today after having been on Ketamine for a bit over 24 hrs so far, and only on a full dose for about 4 hrs.  Coincidence?  Possibly.  I will have a very good idea in about 6 hours.

There seems to be some "we" and "you" thing going on here. All the we's know everything.  Anyone else knows nothing.  Pretty funny, except that it is stupid and condescending. I didn't post asking for assistance, other than when I asked for who might know about getting some Rivea corymobosa seeds.  Some of your posts have had a nice tone, but others have been rather, shall we say condescending, as in "it would have been more considerate."

My post was just to say, as it did, that I was trying a treatment that I had not seen discussed on the site.  No more, no less. All who have responded have assumed--without asking--that my knowledge was ZERO, when, in fact, as I then took some time to explain (time that I have little of)  my sister and mother are Neuros, I am a multi-degreed person who represents numerous mds in the work that I do and am very familiar with medical jargon, the way the medical system functions, insurance, etc.  I have tried everything (as far as I know) that has ever been discussed on this site, and--as I said--I was just posting to let folks know I was trying something else and would let people know how it went.

You will note that in each of my posts I thanked posters for their input.  In response, I got some very nice and useful thoughts and responses (although, as noted above, most all assumed without asking that I didn't know anything and ignored what I said about not being a rookie) and also received some pretty darn negative stuff.  Very judgmental (about pain mgt., and other things that I was not even discussing in my post--my post was about Ketamine).  And some just plain rude.  Its ok.  I have thick skin and all I truly care about is getting better.  I also care about sharing knowledge and information.  Which is why I have always liked this site.  Although I must say that participating has been less than wonderful, so far.

And really folks (some of you, not all), try asking before telling.  My very sentence was "I have had CH for 22 years and have had success with various treatments."  That should impart some experience and knowledge.  I apologize if I should have taken the time to lay out my entire CH history, but somehow it didn't seem necessary to do anything more than say: Hey, I am trying a treatment not discussed on the site.  I'll let you know how it turns out.

sincerely,
thee reptile

another friendly person

If I may make a suggestion without further riling your feathers, esp since you have had these for 22yrs and have tried everything.  (I've had them for 34, so I think I know a little too.)  You said you sometimes have success with O2 at 7.5lpm.  If you get results with that low of a flow you are a very rare bird.  I would suggest you try at least 25 lpm with an O2ptimask before you start using pain management.  I have yet to meet a clusterhead who has had good results with PM.

Jerry

I sometimes get results w/ as low as 7.5 lpm, other times I need 25 lpm, sometimes 02 only works after a 10 minute break (boy I hate that interval), sometimes it doesn't work at all.  Sometimes, the only way I can sleep, is to set my old-fashioned regulator at around 4.5 to 5.5 lpm and just let it flow all night.

As for "not fucking with Bob," whoever he might be; what an odd comment.  Has it come down to such petty junior high behavior?  Whoever made that remark is a special person. I could come back and say something like "I played on a national rugby side when I lived in Africa (true), have been a college professor (true), a judge (true), have never lost an arm wrestling match in my life (true), etc.," but who cares.  Bob and whoever is standing up for you, I am not fucking with you or anyone else.  I am merely on this site to comment on Ketamine, and because someone made a good faith remark about O2, I am commenting on that, as well. 

Finally, as for the Ketamine, I will ignore the "sir" remark as I probably deserve some of the tone, and promise to let folks know.  So far, it does not seem to be working very well.

reptile wrote on Sep 29^th, 2010 at 6:45pm:


Thank you for the report back.

Sorry to hear you have been unable to hold a job with your multi degrees.

You began your post by telling us what we were only trying to say in the very beginning-ketamine probably won't work. You now are where we were. Then you go on to say:

Quote:


If you really don't "get it," then please reread your posts with an eye to critiquing their tone from the standpoint of one who has been trained in sensitivity. And, apply your skills are getting along with others. If what you really want is to be a part of a volunteer, helpful and for many life-saving community, that is. In my experience (which is vast and even broader than your own impressive record) a little humility goes a long way. Stick around. Don't go away mad. Keep us informed and if you do need advice, just ask.  Blessings. lance

Hey reptile, sorry if my post offended you, but I am a very blunt person.  I am not one to sugar coat anything.  And my response "pain management is not the answer" was not only directed to you, but to any one who happens to want to go that route.  It is a long road to nowhere when it comes to acutally dealing with CH.  I am a big proponent of PREVENTING pain, not treating it.  Just my 2 cents.  Hope you find something that works well for you.