My son has suffered cluster headaches for 13 years, beginning suddenly when he was 12 years old. They remained episodic until a car accident about 5 years ago, at which time they became chronic and skyrocketed in intensity. He was put into a drug-induced coma for a week when both he and the pain became uncontrollable. Since that time he has been chronic and his spikes have intensified till they now build to a blackout when the spike becomes intense enough. There are days when he has no blackouts. But there are also days when he has had 30-40.

My question is, does this happen to anybody else, or is he unique in having this symptom? He's had all the tests, tried all the drugs; some of which worked (Imitrex for a while, currently only Methadone is being prescribed - a 1/2 dose of LSD completely eliminated his headaches, including his constant background headache, for a miraculous 5-day period; too bad it's illegal) but most of which didn't. We're currently trying r.c. seeds, but it's too soon to tell whether or not they'll be effective.

Nope, not me. 13+ years chronic with times I wish I was unconscious......

Did his blackouts start after he started on Methadone?

Marc

Many many many times I would pass out on the down side of the pain. but not during the most intense pains. 34 or so years practicing CH of the most intense kind.

"But there are also days when he has had 30-40."
30-40 spikes, blackouts? can you elaborate on this?

No blackouts here, although I've joined marc and many others I bet in having wished I could black out.

Your son's blackouts almost sound like a bit of actual mercy (considering the severity of his condition) in his otherwise unmerciful experience with this horror.

Marc, nope, he's always had blackouts, but they were much rarer when he was episodic; only the most intense spikes peak in a blackout.

MJ, there have been many times when he's had 4 or 5 spikes in a row, 1 or 2 minutes apart, each ending in a blackout. The blackouts are short - usually lasting only 10-20 seconds, rarely longer than a minute.

Bejeeber, thanks for the empathy. I feel the same way. It seems like the pain increases until his awareness just won't have any more of it and pulls away.

Quote:

currently only Methadone is being prescribed

Find a new Doc.

seaworthy wrote on Oct 15^th, 2009 at 7:19am:

Find a new Doc.

Mmmm I don't know man, sometimes these 4 words or less contributions, popular as they can be around here, don't seem so helpful to me, and can even be the opposite, especially for people in desperate situations.

Seaworthy are you really aware of the extraordinary severity of this case and the fact that imitrex, etc. have been tried and are no longer effective?

My guess is that since the medical options appear to be exhausted, "find a new doc" isn't going to do much here, and that Bonkers may be on the right track with his search for an effective hallucinogen, since the one time trial of the LSD is the ONLY thing that has brought any relief so far.

bejeeber wrote on Oct 15^th, 2009 at 11:25am:

seaworthy wrote on Oct 15th, 2009 at 7:19am: Find a new Doc. Mmmm I don't know man, sometimes these 4 words or less contributions, popular as they can be around here, don't seem so helpful to me, and can even be the opposite, especially for people in desperate situations. Seaworthy are you really aware of the extraordinary severity of this case and the fact that imitrex, etc. have been tried and are no longer effective? My guess is that since the medical options appear to be exhausted, "find a new doc" isn't going to do much here, and that Bonkers may be on the right track with his search for an effective hallucinogen, since the one time trial of the LSD is the ONLY thing that has brought any relief so far.

I am going to politely disagree here.  Finding a new doc should be job 1.  A headache specialist or nuero at the least.  Even in 13 years, there is no way they have tried EVERYTHING.

Also, these frequent blackouts seem like a red flag too.

O2 in higher flow rates with correct mask should be the 1st option here.  I am talking MUCH higher flow rate than they have used before.

Has he tried topey, verap, cafergot, zyprexa, lithium,........  I doubt he has tried it ALL  (there are a ton more to try).  He needs a doc who knows more than methadone.  There is NO REASON not to be on a preventative (even if you keep trying different ones).

Now, if you like your doctor..... wait on Bob Johnson... he'll post a whole ton of stuff here and I would print it out and bring it to your Dr.

I know it seems like you have tried everything, but honestly, I bet there is still a bunch more to try.  Don't give up...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Methadone has nonopioid actions, including inhibition of the reuptake of monoamines (e.g., serotonin, norepinephrine) and inhibition of N-methyl-d-aspartate (NMDA) receptors-pharmacologic actions that result in additional analgesia.

Sounds to me Bonkers that the methadone may have a 2 fold fault one in possibly increasing the effects of CH and 2 in blocking the benefit of the seeds. LSA molecules mimic the serotonin.
Clustrerheads for the most part have found little benefit from the opiates on their CH and often they do increase the frequency and intensity of the hits as well as create constant background headaches. (some have taken doses that would stop an elephant but the CH still comes through.)
As I assume from another of your posts the benefit doesnt seem to be with the methadone why continue it if doesnt help. Talk to your doc and maybe start over with the new treatments.

FramCire wrote on Oct 15^th, 2009 at 1:08pm:

Finding a new doc should be job 1.....O2 in higher flow rates with correct mask should be the 1st option here.  I am talking MUCH higher flow rate than they have used before....

Are you actually suggesting some "new" doctor is likely to write such a prescription? :D I'll believe that one when I see it!  ::)

I believe I saw Bonkers mentioning earlier the intent to retry O2 with Hi flow/non-rebreather, but that's just a matter of using the previous prescription or getting a new one from current doc or whoever, just to get the O2, then taking charge of how to actually administer it.

Otherwise FramCire, I'd say you've detailed some reasonable pro medical establishment/pro meds points (whether or not they pertain to any approach that hasn't already been exhausted in this particular case), something that can be much more helpful IMO than the "4 words or less" type contributions.

Gosh guys and gals, that's a lot to respond to, but no time now. I'll be back later. Thanks.

bonkers wrote on Oct 15^th, 2009 at 4:23am:

MJ, there have been many times when he's had 4 or 5 spikes in a row, 1 or 2 minutes apart, each ending in a blackout. The blackouts are short - usually lasting only 10-20 seconds, rarely longer than a minute. Bejeeber, thanks for the empathy. I feel the same way. It seems like the pain increases until his awareness just won't have any more of it and pulls away.

Exactly
This happened to me when I went chronic but only for about 2-3 weeks when I was at the peak of the high cycle & I didn't know about o2, in fact I had nothing other than my wife calling the ambulance.

Your description about the pain intensity & passing out is the way I see it "The body will accommodate pain to a level & then for self preservation or giving the brain a chance to catch up with the pain, it shuts down for those short periods"
That is how I would describe a KIP 10, the pain is at the maximum you can mentally take & the body just shuts down for those fleeting moments.

Now that I have o2 I have never got to that pain level again, "Kill it before it kills you is my aproach."

Cheers
Barry

Seaworthy, I appreciate your comment but we've seen 4 doctors: Michael's G.P. wasn't much help when he was a youngster, but he did refer us to a Neurologist who diagnosed the clusters, ordered the standard tests and tried over the course of about 3 years most, if not all, of the standard drugs mentioned in this forum. Some of them were at least partially effective, but none of them maintained their effectiveness over the long run. When the Neuro (this is the same guy who drug-induced Michael into a coma when he became uncontrollable in the E.R.) decided that Michael should take all of the effective drugs at the same time, we said our goodbyes and took him to a semi-famous (at least in this neck of the woods) holistic doctor who had M.D. degrees from both the U.S. and China. He planned to try hypnotism, acupuncture, oriental medicine and a full round of allergy studies; but after spending 2K, 3 full days in his office (a 2-hr drive away) and only half-finishing with the allergy testing, we again said our goodbyes. Michael is currently seeing my pain specialist (I had 5 vertebrae fused in my neck) who, while not a headache specialist, is a very caring and thorough pain specialist who knew and learned enough about Michael's condition that we're both more than comfortable in having Michael treated by him. He repeated all the tests, tried all the drugs and had the same outcome: none of the tests showed anything and none of the drugs had any lasting effect. He did find that narcotics kept most of the spikes away and very few of the ones that got through from leading to a blackout. Methadone was the only narcotic that didn't require an increase in dosage over time to maintain effectiveness. I haven't told him of our success with LSD, but I will the next appointment either of us has with him. I'll let you guys know what he says.

Bejeeber, thanks for having my back.

Barry_T_Coles, your description of the blackout is right on. We tried O2 once b4 but didn't find it useful. At the time though, we didn't have the correct breathing apparatus and we weren't using a high enough flow rate. We're VERY anxious to try it the right way. Thanks for the help.

Quote:

Seaworthy are you really aware of the extraordinary severity of this case and the fact that imitrex, etc. have been tried and are no longer effective?

No. I'm completely new to this.  ::)


Quote:

I appreciate your comment but we've seen 4 doctors

I went through approx. 15 Docs before I finally hit one who was cluster educated. What State do you live in?

Hi, Seaworthy. We live in Southern California - far southern California.

Here is a list of sufferer recommended Doctors in California taken from the OUCH website.

California
 
Dr. Paul Kazimiroff
West Los Angeles
 
Kulveen Sachdeva
San Ramon
 
Dr David Kudrow
Encino/Santa Monica
 
Olana Abera
Sacramento
 
Neil Raskin
San Francisco
   
Eric Collins
Oakland
 
Jack Florin
Fullerton
 
Rifat Rifat
Westminister
 
John Bissell/Kaiser Permanente
Sacramento

bonkers wrote on Oct 15^th, 2009 at 10:40pm:

Hi, Seaworthy. We live in Southern California - far southern California.

Get in touch via PM with Guiseppi - he's near San Diego. He can steer you.

Bonkers - check your PM's.

bejeeber wrote on Oct 15^th, 2009 at 2:25pm:

FramCire wrote on Oct 15th, 2009 at 1:08pm: Finding a new doc should be job 1.....O2 in higher flow rates with correct mask should be the 1st option here.  I am talking MUCH higher flow rate than they have used before.... Are you actually suggesting some "new" doctor is likely to write such a prescription? :D I'll believe that one when I see it!  ::) I believe I saw Bonkers mentioning earlier the intent to retry O2 with Hi flow/non-rebreather, but that's just a matter of using the previous prescription or getting a new one from current doc or whoever, just to get the O2, then taking charge of how to actually administer it. Otherwise FramCire, I'd say you've detailed some reasonable pro medical establishment/pro meds points (whether or not they pertain to any approach that hasn't already been exhausted in this particular case), something that can be much more helpful IMO than the "4 words or less" type contributions.

1. The script doesn't have to call out a non-rebreather nor a high flow regulator.  It just needs to call out O2 with enough to cover the use.  You can buy a regulator AND a mask yourself without a script as well.

2.  Any decent doctor will write a script as it is needed to treat.  O2 is safe and cheap, so doctors who are educated in clusters will write scripts the right way for it.

3.  TO Bonkers:  you have thanked one person for "having your back" but I hope you understand that all the people who posted here (and many others who have yet to post) have your back too and will continue to do so.

4.  Pain specialists can be very good in helping with CH.  My pain specialist (neck problems) did help me with a nerve block a few times.  He also would have given me any legit script I asked for written as needed.  It just happens that I found a headache specialist who i didn't have to educate or he might be my main doc.

5.  Again, there are way too many drugs that have worked for some people to have tried them all.  You hopefully have records of what you have tried and at what levels (how many of us were on woefully low doses of verap or O2 when we first got scripts).   Hopefully O2 will work and you wont need anything else, but if it doesn;t try to piece together what you have tried.

6.  Has your pain specialist suggest a nerve block?  They helped me short term.   

With all this said,  when you don't have a doctor who knows CH, getting a doctor who cares enough to find out the answers is so key.  I had a team of doctors who ended up getting their best answers here.  Now that the SD people have you in their hands, I have confidence you have a good shot at getting some relief.

FWIW,
Pain specialists are good docs for treating pain. I also tried methadone years ago and it did help keep down the pain levels a bit, but...as important as it is to treat the pain, its important to also continue trying to treat the attacks "before" the pain needs attention.
You can continue to treat the resulting pain AND continue to try and find some preventive that works.
Methadone is usually used when people (doctors) have given up on the idea of stopping the pain and just treating the inevitable. This is understandable as it does become frustrating, tiresome and downright exhausting sometimes.

Don't give up on finding a way to prevent the pain or at least treating it "before" it becomes unbearable.

I would suggest, as have the others, trying to find a headache specialist in your area. Someone that is in for the long haul and won't become discouraged and quick to "script you out the door."

Getting the proper 02 set up should be number one.

With the correct 02 set up, hopefully your son will be able to control the pain enough that he will make the pain specialist and the methadone unnecessary.

Its likely that the methadone is causing the seeds to be much less effective. Don't compare the results from the LSD to that of the seeds, especially with the methadone in the equation.

hang in there,
Bobw

Numbers have been exchanged, we'll be in touch! ;)

Joe

FramCire and Pinkfloyd, time and compassion crafted the obviously knowledgeable advise offered by you both. It is very much appreciated and will be followed.

Please don't feel that I intended to single anyone out as "having my back." I'm so grateful that I found this forum and Pinkfloyd's Clusterbusters. I've felt nothing but compassion from everyone who has contacted me here. My thanking someone for "having my back" was a poor choice of words but was only intended to be a friendly acknowledgment. I'm grateful to all of you here for the support and advise you've offered.

Thanks everyone.

Only 1 episode of being unconscious.  During a Kip 10 by hitting my head on the concrete too hard and knocked myself out  :'(  (I guess it killed the pain though)

Bobw, I can't stand it! What does FWIW mean?

I have only had one time in my 21 year history of CH when I passed out. This was after days of CH hits and no medical relief.

While I want to understand what you are dealing with I believe you may have something else along with CH going on. Please have this diagnosed by a compitent Neoro.

Also, this may be nothing more than something similar to what I experienced, alcohol may have been a factor in my case......???

Don

bonkers wrote on Oct 18^th, 2009 at 12:43am:

Bobw, I can't stand it! What does FWIW mean?

Sorry. Too many years of internet speak.

FWIW = For What Its Worth

Bobw
With all the texting and SMSing and IMing going on these days, there will come a day when the question is asked..
"Pat, can I buy a vowel?" and the answer will be...."No, we don't use those anymore"