I'm making a real stretch in wondering if, in fact, you have CH rather than a CLUSTER-LIKE condition.

CH, as a primary headache disorder, means that it is not caused by another disorder. What you have said is that your headache developed after another major problem, ergo, cause may be secondary outcome.

One of the diagnostic signs is that meds which normally work for CH are either erratic for CH- LIKE disorders or they not work at all.

I assume this possibility has been explored by your docs but I'd like to know before assuming that you are asking about a primary headache disorder. The medical approach is different depending on how this condition is diagnosed.

Still, a couple of resources which may be worth exploring, have you not done so:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
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City of London Migraine Clinic [and other types]  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
======

Your excellent support group:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

As I say, all a guess on my part but some response from you would be useful.

Since we're making real stretches here, I'm going to paste in the recent recounting by Bonkers of his son's saga so far. This is another unfathomably bad one that reminds me of yours, and it brings up the promise of....now just let me explain a little here before you become too skeptical! ........ hallucinogens.

If you haven't heard about this facet yet, serious research is being done here by prestigious types at Harvard medical, and non hallucinogenic doses of hallucinogens are indeed showing some great promise for cluster treatment.

It sure as hell is something I'd try before resorting to surgery!!

Anyone interested should read everything over at clusterbusters.com.

And now for Michael's story:

"Hi all,

I suppose, if we're ever to change the legal status of perhaps the only truly effective therapy for this horrible affliction, that we should heed bobw's admonishment and "stand up and be counted."

This is the first time I've told our story publicly, but I think it's high time we joined the fray. I say "we" because I suffer along with my 25-year-old son Michael as he lays in his darkened room rocking, crying, sometimes screaming through 15-20 hours of every day. I'm 63 and retired so it's no trouble for me to be home to care for him.

His clusters began when he was 12 years old. We thought they were migraines since both my mother and I had them from our mid-teens till our early thirties. She had nothing to help her but by the mid-sixties I had found "Medihaler-Ergotamine" which remained in my pants-pocket till I was 30 and my migraines went away.

Michael was taking a shower when his first cluster struck. Like a lightning bolt, it knocked him to the ground (or rather, to the bottom of the bathtub). Scared the hell out of us! Over the next several years, he would have spells of headaches lasting from a couple of days to a couple of weeks. We tried all the drugs. Took all the tests. He was diagnosed with episodic cluster headaches about 8 years ago. Imitrex, oxygen and the narcotics all worked for varying lengths of time. The rest of them worked very little, if at all.

Then, about 4 years ago, he was involved in a particularly bad car accident where he suffered some head trauma. His headaches became chronic and increased exponentially in severity and duration. The pain was incredible. In the hospital, none of the drugs brought any relief - he was put into restraints and finally, with his neurologist's consent, an induced coma. After a week, when they brought him out of the coma, he seemed improved for a few days. Then they came back. We fired the neurologist and I took him to my pain doctor (I've had 5 vertebrae fused in my neck). He promised not to rest till he had eased Mike's suffering. And he has really tried. But to no avail. He currently has him taking 120mg. of methadone every day and it barely touches the pain.

Michael has what he calls a "background" headache which he carries around 24 hours a day. This "background" headache is interspersed with "spikes" which vary in intensity from the comparatively mild experience of feeling like someone is ripping out one of his eyeballs to that same experience intensifying till a lockjaw-like symptom occurs which precedes an abrupt loss of consciousness which can last from a few seconds to a few minutes. A "spike" usually wakes him about 4 o'clock in the morning. Any number of recurrences typically keep him abed till about 8 at night. He then gets up and watches a movie or two with his old man. Back to bed about 1 in the morning. That's his life. He can't work or go to school. He has no social life. His family's love has kept him from suicide. I respect and admire him more than you can imagine.

Then, a few months ago, I read an article in the journal "Neurology" entitled "Response of cluster headache to psilocybin and LSD." I now consider this article a "must read" for anyone suffering from, or caring for someone suffering from, the awful affliction of cluster headache.

I HAD to try this! I remembered these drugs from my "hippy" days - I grew up in the '60's - and knew that under the proper circumstances they could be taken safely, especially at sub-psychedelic dosages. So I tried to find some. I no longer take drugs recreationally, but I know people. I felt that with the people I know, along with the people my son knows, we were bound to be able to find something. No luck. We tried for nine months and couldn't find anything. Apparently, in Southern California at least, psychedelics have fallen out of favor.

Then, a couple of weeks ago, we got a phone call. Somebody knows a guy that knows a guy that knows a guy. He had heard of our plight and would give us a single dose of LSD for free. Whoopee!! I cut it in half. Michael took that half and we waited. 1/2 hour, nothing. 2 hours, 3 hours, nothing. We figured that he had either not taken enough - he experienced no psychedelic symptoms whatsoever - or that he was one of those people for whom the drug was ineffective.

Then, all of a sudden, Michael sat up, looked at me and said: "My headache's completely gone, background headache and all, completely gone." F___ing amazing! And it didn't come back, not even the background headache. We hoped that he might be one of the lucky ones who take one dose and the monster never returns. But such was not to be. On the fifth day it returned - with a vengeance. He had 5 glorious, headache-free days. He was full of joy and promise and hope. And then they came back. F___!! So far, we've been unable to find more psychedelics. But we will. And we know they work.

WELL!!!--as soon as you evoke the name, Peter Goadsby, we know that god has spoken! He has quite a reputation in our group.

Your doc's present plan is reasonable and worth a try. I have not mentioned a med which several of use have found very effective. You may wish to print out this abstract and talk to your doc about....
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

Thanks for advice, but it's a non starter for the UK.  The mushrooms are banned even from import as seeds now!
With a young family, the last thing I need is a visit from our Police forces and so I stick to legal meds!

Bob mentioned that 'God' had spoken in the name of Peter Goadsby.
To give the lighter side of being in CCH, a little story might bring a smile..........

I had been admitted to National Neuro in Queen Square, London under Prof. Goadsby for some Lidocaine via IV to see if my CCH responded.
Anyway, although the hospital is a very old style building with grand stairs and little corridors/tunnels, it has incredibly modern equipment and the best Neuro's in the UK.  Peter Goadsby is a man of two styles - to us patients he is warm, interesting, never patronising and never a man to give false hopes or to dismiss any worries we might have.  But watch him on a ward round with his staff and it's like 'WOW!,  he is the BOSS. 
I witnessed the Prof. come to my bed with a string of doctors, some of equal medical level, he turned and asked a question to one of these guys that apparently the guy should have had an answer for and when the guy fumbled, the Prof. tore him to shreds!  Prof. Goadsby does not tolerate fools or slackers.  On the other hand, one of the team didn't understand the finer details of the upper levels of Lidocaine therapy and the Prof took real time and care to explain in encouraging tones what the details were, until the other Doctor was much clearer. 
Not only is Prof Peter Goadsby a 'God' for us CH sufferers, but he is a man that once you meet him, you will always admire.

Anyway the funny part is that one of the dangerous side effects of IV Lidocaine is the risk of cardiac arrest!  So there I was on a very high dose Lidocaine IV and felt a loss of sensation in my legs - 'No problem, says I - I'm an ex medic and it's just a small Lidocaine reaction'.  So by now the numbness is in my arms and I'm thinking that I should call the nurse.
The ECG monitor suddenly flashed red and alarmed - big time!
A crash cart and crash team come flying in and surround my bed.  Defib is at the ready and puzzled faces look at me a s I yell "HEY, WHOA, I'M NOT DEAD!".
Turns out the machine is programmed to alarm below a certain beat rate and the nurse had dialled a 'crash' call - meanwhile I'm feeling like crap, but definitely still alive!
See, even the best equipment can turn an average day into a comedy of errors.

Hey all,
How about the self inflicted foul ups?
Bob, this ain't fictional 'black humour' - the prat who's writing this actually did this yesterday!

Yesterday 20 October my wife took me to our major hospital (about 50 miles away) because my consultant wanted me to have my regular (about every 2 years) MRI with Gadolinium dye.
Great we had a letter with the appoinment and the regular scan is reassuring because the scan is always normal and therefore its still 'just' Cluster and nothing else.
So my wife drives me, I'm all ready under my outer clothes with shorts and T-shirt and we turn up in good time.
Radiographer clerks me in and we check the letter, fill in the safety form, get changed and go and sit in the waitng area.
20 minutes later the radographer came out and asked me to follow him through to - another quiet area where he very kindly told me the appoinment wasn't until 1.30pm on 27th  October 2009! - We're a week early!
I told you my memory was affected or did I forget to tell you that!?
Andy