I have had CH for 22 years and have had success with various treatments, but am now in a cycle that is really terrible.  I am basically debilitated.  I've been calling around Los Angeles and was referred to a Pain Mgt Neuro in Santa Monica who does not take insurance and charged me $495, but had some new ideas for me today.  She was straightforward, attentive and clearly knew a great deal about CH and its various treatments.  She said she would try Botox, but preferred an agonist (I didn't write down the name) that acts to supercharge Melatonin, and has also has had good (about 40%) results w/ Ketamine.  She  does ganglian blocks and surgeries with good results.  I chose Ketamine and had it compounded at a local pharmacy for oral ingestion and will titrate up quickly to 2 oral doses daily of 20 mg.  The Neuro says that I will know within 3 days if it works as the people it works for get 100% relief within 72 hours or nothing.  I will report back.

(the formerly Knarlsome) Reptile

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

I tend to agree with Wimsey here.  I did a little research and it does not look like there are not any substantial studies that indicate Botox or Keatmine are affective in treating cluster headaches.  Botox has been used for migraines, but there are limited studies on it's effectiveness for use with ch.  As to ketamine, the only information I found on it with regards to treatment of headaches is that it may be recommended for use in some chronic or intractable headaches and it is almost always used via IV therapy.

If it were me, I think I'd look for another doctor who specializes in headaches and not pain management.

Carolyn

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.
======
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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

Pain management is not the answer.

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

Pain management is not the answer.

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.

Botox treatments are terribly expensive. $2,800.00 into my son's forehead proved absolutely useless.

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.)

Sub-hallucinogenic doses of LSA from Rivea Corymbosa seeds, Psilocybin and LSD are proving fruitful for many sufferers. You can find a lot of information regarding their use at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

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.

Would it not have been considerate if you had given us this long history before we invested ourselves in an effort to assist you?

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

Get off your high horse.

                 [smiley=smokin.gif]

another friendly person

Don't fuck with Bob.

       Potter

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

Please Sir, after your Ketamine treatments, would you be so kind as to inform us of the results?

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:

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. At the risk of offering even MORE unasked for advice (that's the way we are and it aint gonna change)...I would encourage you to search the posts of "Batch". There are new and BETTER ways to use O2. As for "not fucking with Bob," whoever he might be; Now THAT is ignorant (which is fixable)...search his posts too...you MIGHT learn something. what an odd comment.  Nope...see above. Has it come down to such petty junior high behavior?  Whoever made that remark is a special person. Yes he is...and he signed the "advice"....I'll repeat it... Don't fuck with Bob.        Potter 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.  Exactly. 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.  Great! We love to hear about alternate therapies. Can't and won't apologize for others who care and DESPERATELY want to help ANYONE with this nightmare condition....whether specifically asked or NOT! 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. Sir...to me...seemed appropriate...based on the tone perceived. Emails are so lacking in most of the cues communication relies on as to be the bare minimum  necessary. For example...my tone will probably be perceived as sarcastic...I suppose that is my intent...but I will also say that if you never have another ch...I would REJOICE! And if something, anything, you learned here helped get ya there....even BETTER. Best, Jon

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

Finally, as for the Ketamine,  So far, it does not seem to be working very well.

Thank you for the report back.

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

I am now pretty convinced the Ketamine is not doing the job.

I appreciate the pointers as to who may have helpful information about various treatment options.

I still don't understand why anyone tell me "not to fuck with" someone or why that would have anything to do with a forum such as this.  It is clear to me that a couple of people, or is it one--I am not clear on that--are sending less than kind messages to me.  Unless it is just joking around.  But I can't imagine that such joking around would be appropriate in this context.

The comment about not being able to keep a job, again, assumes facts without asking me.  I retired for 6 years at one point very early, to spend my time doing volunteer work and getting to know the woman I had fallen in love with a few months before.  I began to work again when we decided to have a family.  I had to stop working for quite a while after I nearly died a few years ago from a systemic staph infection (there is an entire month about which I remember nothing). I eventually recovered sufficiently to be able to learn how to sit up, then stand and walk again, and take speech therapy to where I could work.

Jon's comment re email lack many communication cues is correct and so I may be missing intended humor and goodness knows what else in some of the posts sent my way.  All I can tell you is that I mean no one any harm.  I always do my best to avoid fights (I haven't been in physical altercation since I was a teenager).  I apologize if I have [provoked anyone.  I repeat that I cannot understand why anyone would say "don't fuck w/ so and so."  I just don't get it.  For a number of years, I have done cross-cultural sensitivity training, volunteer work with dying people, and spent hundred of hours working with the UN's Millenium Project (mostly organizing teams of architects to design and build birthing centers in different African countries), so my approach to things is not to "fuck with" people, but rather to figure out ways for people to get along and work together.  Yes, even after the staph infection, I am an imposing physical presence, but I am a peaceful man, and I wish you all would let me be that way. 

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:

I just don't get it.  For a number of years, I have done cross-cultural sensitivity training, volunteer work with dying people, and spent hundred of hours working with the UN's Millenium Project (mostly organizing teams of architects to design and build birthing centers in different African countries), so my approach to things is not to "fuck with" people, but rather to figure out ways for people to get along and work together.

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

Thank you, Lance, for a very kind and thoughtful post, complete with excellent guidance.  A pleasant contrast to the "don't fuck with" post I have been getting daily along with continual assumptions as to who I might be or what might my experience level is--all without asking.

Thank you also for encouraging me to stick around, both to learn and participate.

Its been a tough week around here (partly by reason of the worst CH I have ever had this last month) as my neighbor and best pal has died just as folks were coming into town for his son's Bar Mitvah (sp?).  Everyone (in my household, the block, all of our friends staying in local hotels) is so upset.  But life goes on; something that CHs know all too well.


peace on the planet,
thee reptile

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.

Thanks for explaining yourself.  I appreciate. It seemed you were saying that Pain Mgt mds were not worth going to, which I thought was closed minded.  I do agree that they would not be my 1st choice for CH help, but as I noted earlier, the PM md I saw last week was very well-informed (in my opinion), spoke w/ me for most of an hour and after laying out several treatment options and the pros & cons of each, let me choose amongst them.  She did charge $495 and doesn't take any insurance, but I knew that going in.  She also gave me print-outs of a few recent CH research studies (only 1 of which I had seen), and citations to 2 more, which I thought was very cool.

So, is "pain mgt" a good way to handle CH?  Perhaps; for a few folks at one end or the other of the Bell curve, I imagine, but very few.  You can look at a post I did yesterday under "prophylactic use of triptans" for a discussion of my occasional successful use of narcotics for CH.  As for pain mgt mds, I reckon I am now familiar with, if not knowledgeable about, one who seems to know a good deal about CH and has treated a considerable number of our fellow sufferers.

peace,
thee reptile

S'OK, reptile. We know the kind of week you're having and we hate it, for you and for us. Pain is always personal, and it's always infinitely variable in its ability to demoralize and depress. We'll do almost anything to stop the pain when its unremitting. Thanks for your generous replies, do stick around, and throw in with others helping others. God bless! lance

Dr. Lee Kudrow was the Dr. who diagnosed and treated me back in 1987.   He was wonderful and yes, of course he treats patients with standard meds and 02.  I certainly wouldn't have expected him to suggest shrooms or seeds.  His nephew or is it his son has an office very near you in Venice.

To answer your questions on where to get the seeds.  iamshaman.com    They are legal to buy and very inexpensive.

If you read around this site for any length of time you will get the distinct feeling that we are all family here, because we are.  We have yearly conventions and other get-togethers and pretty much keep tabs on each others life in general.  We support and defend each other also. Bob Johnson is not only a sufferer but has such an immense shere of knowledge of CH that he helps newcomers with each and every day.  This hopefully explains the don't F with Bobcomment. 

John Claude Krusz, Dallas, TX.: IV Ketamine in the Clinic To Treat Cluster Headache. P02.168 American Academy of Neurolog, 61st Annual Meeting 2009.

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John Claude Krusz lives here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Memantine is also a NMDA receptor antagonist, similar to Ketamine
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For Memantine see
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Pretty safe to safe that 2 ml of Ketamine 2 times/day is NOT working for me.  In fact, today has been the worst day I have had in a long time. 

Sorry the Ketamine isn't working for you reptile. Hope you find relief soon.

In the case reports from Dr. Krusz "0.4mg/kg of ketamine was infused over 90-120 minutes" - intravenously. For a person's body weight of 80kg the corresponding intravenous ketamine dose would be 0.4mg/kg x 80kg  = 32mg.

   

Sorry, my prior post should have stated "Pretty safe to say . . . "

Anyway, the bottle I am using for oral dosing states "20 mg/ml liq."  I am taking 2 doses of 2ml twice daily and weigh about 215 olbs, or 97.5 kgs.

Since there are 20/mg/ml, and I am taking 4 ml/day, I am taking 80 mg/day.

By the case report formula, I should be taking 0.4/kg X 97.5 = 39 mg if it were an IV dose.  But my dose is oral, taking in halves, 12 hours apart and absorbed through the digestive tract (an entirely different formula, I am sure).

Thanks for the info.

thee reptile

On clusterbusters we've started a thread on Ketamine and a lot of interesting info has come out, felt like we should be posting this here too.   With all the bickering on this thread though, I really wanted to just start a new one.  But... I think this thread also has important info that has nothing to do with Ketamine.  The info we have found on Ketamine seems to show this may be a very viable treatment for clusters and may even be able to point us in the right direction as far as why these clusters are happening.  Over and over again people responded to this original post pretty negatively, telling the poster that it wouldn't work, telling him "not to fuck with people"

All I read was someone trying to talk about a therapy that a lot people had not heard of... I'm not trying to be a jerk and I'm NOT trying to rile people back up.  I think it's important to remember that ALL THE OPTIONS THAT WE HAVE SUCK.  I applaud the courageous individuals who are willing to "take one for the team" and try something new.

As far as Ketamine, I'm going to copy some stuff from our clusterbusters page...

Ketamine
May 31st, 2011 at 9:32am      

Something that I'm amazed hasn't been talked about much....There is 1 post on our sister site, but it seems mostly just like people arguing and not many facts.  I have not had much experience with Ketamine, medicinal or recreational.  In another post I talked about how John C. Lilly managed to get rid of his migraines while on large doses of ketamine inside a sensory deprivation tank (something he actually invented--the more I read about this guy the more amazed I am)  It took a couple tries (each time taking more Ketamine) but eventually he was able to visualize his migraine and fling it off into space, never to return.  Whoa.........Here's more info on him 

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Now, I'm not advocating this type of therapy (sounds like he almost drowned more than once)  but it got me thinking and researching Ketamine and I've been amazed at what I found.  Most research has been into migraines, but has had damn good success

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Eventually I found a trial with clusters, even if it was only 4 people

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The whole idea makes so much sense to me it's ridiculous.  Ketamine seems like it ends up blocking glutamate toxicity in the brain, something I researched a lot when I was having seizures.  Glutamate is an excitatory amino acid sometimes refered to as an excitotoxin.  Too much in your brain and you will eventually have a seizure, before that it'll cause a host of problems that western medicine hasn't even begun to identify....And I would not be surprised at all to find clusters one of them.  The thing that really amazes me is that it seems like it has an almost "busting" effect--people are getting relief for months after the initial therapy.  I am on the hunt for an adventurous doctor!  Anybody have any experiences or thoughts with this?

-Ricardo


Re: Ketamine
Reply #5 - Jun 11th, 2011 at 12:23pm      

I was just reading through an article (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) on chronic pain and Ketamine and found this in the comments section--

Robert. : 2010-11-07 10:37:04
I've been using Ketamine for 10 years to abort my Cluster Headaches. It is the only thing that has ever helped at all for me. I am able to abort an acute attack as well as abort an entire " Cluster Cycle "... I am lucky enough to have lived outside of the Pharma-controlled USA and have open access to the Ketamine. I wouldn't be alive if not for the Ketamine.


Re: Ketamine
Reply #15 - Aug 11th, 2011 at 2:59pm    

  Under Psiloscribe's awesome post Documents for Serious Psychonauts I found a great article on Ketamine...

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Although it does not at any time mention clusters or headaches at all, something that really grabbed my attention is that it was written by R. Andrew Sewell.  This is same guy that has written about clusters, psilocybin and LSD and who has worked with John Halpern regarding clusters and psychedelics.  It would be amazing to be able to contact him and see if he had any thoughts on ketamine's use for clusters.  I bet he's a busy guy so it might not be a possibility....any body got any idea on how to get in touch with him?


Re: Ketamine
Reply #16 - Aug 11th, 2011 at 5:24pm    

Yep, the same Dr. Andrew Sewell.
I've just a sent him a message.   

FG


Re: Ketamine
Reply #17 - Aug 11th, 2011 at 9:06pm    

Hi Ricardo--

Yes, I am quite busy, but I'm always willing to help out the Clusterbusters. I didn't mention cluster headache in the article because at the time, there was literally no information whatsoever on the effects of ketamine on cluster headache. I was, however, about to join a ketamine research lab at Yale (the same lab that discovered ketamine's rapid-antidepressant effects ten years ago) so I thought I had better teach myself something about it.

The question of whether ketamine works for cluster attacks is important not just for you guys who are looking for some help with your attacks, but for us researchers as well. Psilocybin can't be compared with placebo in a clinical trial, because patient know in short order what they got. We have to use an "active placebo" instead--something that causes an alteration in consciousness but no clinical effect. Roland Griffiths at Johns Hopkins used methyphenidate (Ritalin)--but he was studying mystical experiences, and Ritalin doesn't have a reputation for causing mystical experiences. It does, however, abort cluster attacks, so that was out. Ketamine was the next logical choice--the only question was whether or not it affected cluster headache. There's a fair amount of information that it's helpful for migraine--in low doses, too, less than the psychedelic dose, but that's no guarantee that it's helpful for cluster headache, even though many migraine hand-me-downs do help. So it was an open question.

In the last year or so, however, small studies have started to appear. I'll quote from the March 2010 Headache Currents:
===============
Ketamine
Ketamine is a non-competitive N-methyl-D-aspartate (NMDA) receptor antagonist that has been used as a general anesthetic and analgesic for several decades. Ketamine is thought to exert its analgesic effect via its NMDA receptor antagonistic action, an action that also inhibits the induction and maintenance of central sensitization. Its role in treating and preventing acute pain, such as postoperative pain, is better established than its potential role in preventing and treating chronic pain conditions. Nonetheless, ketamine has been studied for its use as an analgesic in several chronic pain conditions, including post-herpetic neuralgia, central dysesthesic pain after spinal cord injury, peripheral neuropathic pain, fibromyalgia, phantom limb pain, temporomandibular joint pain, and trigeminal neuralgia. In small numbers of patients, subanesthetic doses of ketamine were previously shown to effectively abort migraine headaches and migraine aura, prevent spontaneous migraine attacks, and prevent nitroglycerin-induced headaches.

Ketamine for treating multiple types of headaches.
Krusz JC, Cagle J, Scott-Krusz VB.

The safety and efficacy of intravenous ketamine for the treatment of several different refractory headache disorders were evaluated in this open-label outpatient study of 247 patients. Subjects included 162 patients with refractory migraine, 11 with cluster headaches, 4 with paroxysmal hemicrania, 39 with chronic daily headaches (subtype not specified), and 31 with headaches (type not specified) and facial pain (trigeminal neuralgia or temporomandibular dysfunction). IV ketamine resulted in substantial benefits in all patient groups. Among the refractory migraine group, 93% had greater than 50% reduction in pain intensity. All cluster headache patients had complete resolution of their ongoing cluster episodes (average of 6.4 days). Four of 4 paroxysmal hemicrania patients had complete resolution of headaches (average of 7 days). Sixty-eight percent of chronic daily headache patients and 80% of patients with headache and facial pain were reported to have more than 50% improvement in their pain patterns (exact definition of improvement not provided). Side effects of ketamine infusion included a transient sense of calmness and lightheadedness, experienced by 41% of patients. No patients fell asleep, became dysphoric, or experienced hallucinations. Investigators concluded that IV ketamine is safe and effective for the outpatient treatment of several refractory headache disorders.
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Bummer, eh? Back to the drawing board.

--Andrew


Re: Ketamine
Reply #18 - Aug 12th, 2011 at 9:24am    

Looking at Dr. Krusz's web page, I realize--I've met this guy! I ran into him in Los Angeles in 2008. He was white-haired, but very energetic and enthusiastic; talked a lot about low-dose ketamine for migraines. I asked him had he tried ketamine in any cluster patients, and at that time he had not.

Dr. Krusz runs a headache clinic in Dallas, TX. I know for a fact that there are a couple of Clusterbusters living in Dallas. Can't say who, because it's considered Protected Health Information (PHI) but *koff koff* you know who you are. How about a field trip to Dr. Krusz's ketamine clinic, guys? Send us a report.

--Andrew

That last part is the reason I posted this on here.  Any cluster sufferers living near Texas that are up for a trial that has so far shown "All cluster headache patients had complete resolution of their ongoing cluster episodes"?

-Ricardo

Was prescribed Ketamine nasal spray over a month ago and it's only been good results.  Aborting pain within 15-30 minutes--I've also had 2 different people PM me claiming the same success.....

-Ricardo

Seeing as how this got brought up in a recent post I thought I would give an update...  For just about the past year I have been using the Ketamine Nasal spray--50mg/ml, I go through 60 ml in a month.  It has helped me immensely.  It works quicker than an imitrex shot and seems to have less side effects.  It does give a strange "buzz" intoxication, but it doesn't last very long and unless I take large amounts of it I can still function pretty much fine.  (as opposed to how a half a trex shot makes me feel horrible all over, sedated with my hands and scalp feeling like they are on fire)  I still take Imitrex, but only when I'm getting hit really hard, am out of Ketamine, or I'm about to go to sleep. (Sometimes the Ketamine can keep me awake)  Before this I was taking as much Imitrex as my doc would let me and a pretty heavy amount of hydrocodone.  Might be worth talking to your Neuro about if you are having trouble controlling your clusters.

-Ricardo

Update--I've been on intranasal ketamine  for almost 4 years now.  Before I had it prescribed I was hardly able to work and I was in the ER once a month.  Since getting the Ketamine prescribed I have not had to go to the ER once.  It is in no  way a magic bullet that stops Clusters in it's tracks.  For me it has been the thing that has helped me get through life being in constant, daily pain.  Still on Imitrex, still have to Clusterbust, but now I am no longer shuttling myself back and fort to the ER and for the first time in my life I am working a full time job and living my life fully.

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-Ricardo

Dr McGeeney @ BU is using ketamine with several patients. I think a slow IV and a spray for a boost. It's showing some promise yet very dangerous and is a major drug!!!
Wouldn't be my choice but he's one awesome doc and killer advocate