So it's clusterheads, eh? Been one for 35 years and never heard the term. I have used the adjective clusterf***ed tho. Anyway, I'm 55, Canadian born and raised, live in Agoura Hills, CA, and experienced my first attack during my first week of basic training in Israel. The base doctor, an Aussie, shook his head, lamenting American shirkers. I impressed upon him the possibility that someone who showed up simply to contribute a couple of years of service to their people is unlikely to be a shirker -- quite the opposite. He gave me a shot, of what I have no idea, and told me if I returned complaining of waking up in the early morning with insufferable pain in one eye, he would have me released. So I didn't. I must say that my mates were very supportive in helping me through basic and covering for me when possible. I ended up serving four-and-a-half years, completing officer training. By the end of my service I was having two attacks a week. My driver would take me to a civilian hospital for a shot. No one ever mentioned the term cluster headache. Indeed, no one ever bothered to question me or treat me.

I arrived in the US in 1986, and was diagnosed with clusters quite early at our local Kaiser Permanente HMO. Thus began a two decade effort to find something that might mitigate them. As the years progressed, the attacks grew more frequent and lasted longer than the average two to three hours. My attacks are now daily, and last up to six hours.

The best results I ever had were with Amerge. Alas, I was sent by Kaiser to a specialist at Cedars Sinai, in LA, about four years ago. He was quite jocular in attitude, telling me he would cure me in record time. He prescribed methergene. My wife, an RN, returned home from her night shift with the prescription. I took the first pill with my morning coffee as we chatted about her night. Within 20 minutes, I had a heart attack.

The specialist said he had subjected me to a stress test, and was therefore not at fault. Idiot that I am, I took him at his word. A few months before the three year statute of limitations kicked in, my pain specialist told me, within five minutes of looking at my file, that she had found numerous contra-indications against my using methergine, and that stress tests were not designed to determine whether it was safe to administer them. I recruited a lawyer, and she said she would give me a letter testifying to the above. The onus, legally, was on me to establish that I had learned I had been treated negligently within the first three years. I did not need her to say a word about the Cedars Sinai specialist. While smiling and telling me it would not be a problem, she refused to provide the letter. I kept after her for months to no avail. Ultimately, she had her assistant call me to say that she had never spoken to me about any of this and had no idea what I was jabbering about.

The Cedars Sinai doc did inform me that "we're up shit's creek now." Because of the MI, I could no longer use any of the meds that provided even partial relief. My only recourse, besides irradiating the trigeminal nerve, would be to use pain killers. I had bad reactions to morphine and nothing else lessened the pain.

Then we tried the fentanyl patch. Wonder of wonders, the attacks became bearable. On the downside, I have grown tolerant, I don't like the emotional side effects of the drug, and my short term memory is awful. I used to be a journalist. It is quite difficult now for me to write anything complex. I am on disability now, and devote my days to reading and driving my 11 year old too and from his school, 25 miles each way -- 100 miles a day.

I recently asked to go through detox and was told that as I was not an "addict," that would be fairly doable. But without something to control the pain, I would forfeit whatever quality of life I now have. Not that there's much to preserve. My wife and children have been stalwart in their support. But I feel tremendous guilt at having robbed my youngest of so much quality time with me, at not pulling my weight economically, at burdening my wife, and over disappointing those who expected more of me professionally. I have isolated myself from most of my friends, as I cannot be depended upon to sticked to plans for getting together or doing things, and as so much filters through the prism of unyielding and inexorable attacks.

So, the world's saddest song, played on its tiniest violin. An aunt of mine, a psychologist, suggested that I try to find a local support group. So, if anyone knows of such in the western San Fernando Valley or the western Conejo Valley, I'd be grateful for particulars.

Best,

Sheli

Sheli...welcome aboard to club "clusterhead"...the club NOBODY wants to belong to...but everyone here is a member of. Thank you for your service...the Israeli nation, people, and supporters are very dear to my heart.....

I know little of support groups EXCEPT this one! You will find here...love...support...and THOUSANDS of years of shared experience UNKNOWN in the medical community. Read it all brother......and ESPECIALLY about oxygen...you won't regret a minute...............

Best,

Jon

Clearly, at this stage, you would benefit from working with a sophisticated headache doc.
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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. 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.
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Since our med options are now limited, suggest you print this abstract and discuss it with your doc. A number of us have had excellent results using it as an abortive and I don't believe it will be a problem re. your heart. Note, also, that for a few folks it has stopped their attacks totally.
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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.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Hi Sheli,

I read your story with horror, as I believe there's a very good chance a lot of your suffering hs been needless.

Like sooooo many of us CH'ers you've clearly seen that there are real drawbacks to what the doctors often want to offer up.

Well we're a pretty motivated bunch, as I'm sure you understand why, and over the years bright folks here have taken matters into their own hands, compared notes a lot, and have discovered some ways to find significant relief from this condition.

For a non toxic side effect free way to abort attacks, the NEW method of administering O2 (not the old, ineffective low liter flow, rebreather method) has a huge number of adherents here, because it works for the vast majority of us. The oxygen info link on the left would be the first stop for checking into that.

And there are many other ways to fend this beast off that you won't hear about at the doctor's office.

Chronic sufferers who thought they'd reached the end of the line have been getting impressive results with "clusterbusting". I highly recommend you read this Newsweek article on the subject with an open mind: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

OK, that's the tip of the iceberg, but to sum up, I believe the results of your 35 years of going to doctors for treatments sound pretty unsatisfactory, and I think you could potentially benefit mightily from taking this beast by the horns yourself, and spending a lot of time at this message board not just for support, but for lots of info you'll get nowhere else on some additional, good  ways to spell R-E-L-I-E-F.

Wowser...what an ordeal! And 35 years of what may be needless suffering as Bejeeber pointed out. Please read what both Bob and BJ have written...you can't do better than follow this sterling advice. For the record, if you troll this site, you'll find we talk about meds and OTC's that act as either a preventative (Rx's that keep a cycle from taking hold) or an abortive (stuff that either aborts or aids in the abort of a CH). Some common preventatives are verapamil, lithium, clusterbusting, etc. Some common abortives are prednisone tapers, DHE injections, Imitrex (Injectables more so than pills), Migranal Spray, etc. But King and Queen of all abortives: high flow (25lpm+) O2 with a non-rebreather mask. We've also added a few trick ponies to our circus like energy drinks, melatonin, ph diets, etc. I would suggest you follow up on getting the most-informed doc you can, read this site, make a journal of everything you read that has helped someone, and take that list with you. Let us know how things turn out, OK? God bless. lance