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.

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?

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.

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


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.

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

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

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.

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.

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

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

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

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



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.

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

Joe

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)