Hello, I just found this forum. I have been 'dealing with' this lovely medical abnormaility for 15 years and really need to find some good treatments and prevention methods. As like most of you I have exhausted myself with general practioners and have seen my share of neurologists and have experimented with an array of meds. In the past the prednisone reduction treatment starting at either 60 or 70mg daily seemed to terminate the spell but not this time. I have tried depakote, calan and am know on atenolol for long term/ preventative....and well none of them have worked, I haven't tried the O2 treatment yet but have tried oral Imitrex, nasal Sumatriptan, percocet, percodin and codeine for abatement - alas none of them help at all, I even had some military docs advise at taking 1200mg of IB a day - again no dice. After years of personal research and countless episodes I really need a new direction. Of coincidence my mother was diagnosed as bi-polar at age 34, a little scary I am now 36 - any thoughts as to if this is a pre-cursor to worse medical conditions? I have talked to all family memebers and absolutely none have had this ailment. As of recently I have conceded that the MD's and the medical sites stating alchohol is in fact a trigger or at least likely to cause an exceptionally worse event during a cycle, another lifestyle vice I have is smoking - everyone seems to indicate that this is also a trigger yet I have never had an event begin during or after having a smoke - any thoughts? What is the whole story on the verapamil? My current MD is willing to prescribe about anything I ask for due to my condition, he is knowledgeable of our condition but like most his treatment knowledge is limited by the fact  that so few people have this. This present spell has been running for 3 months with less than 12 headache free days, at least according to my journal. What is the kip scale? I recently started applying a rating of 1-10 on the pain experienced but since they all cause extreme discomfort, are fully dibilitating and reduce my sleep to the day to 3-4 hours they all seem to categorized as an 8 or 9............ >:( During this recent string I have had a few events run long - 4 hours and a few that feel like they are coming only to disipate in less than 5 minutes - if they all lasted 3-5 minutes this wouldn't be a big deal, but when they run 2-4 hours plus thats a whole different deal. Anyone out there with real help or direction? What is the scoop on the book 'The Cluster Cure' - some alternative therapy stuff or just more of the same I find searching the net?

Glad you found us after these long years. Primarily, I want to send you a few items of informatlion to bring you up to date on medical treatments.

But, first, your questions: alcohol is a trigger only when you are in an active cycle; smoking ban is an old, old recommendation but nothing in recent medical literature speaks to the question and few folks here seem to believe it's a problem; no link in the literature between CH and bipolar; pain meds--losers except in the most extreme situations.

Alternative approaches: read the buttons (left) on oxygen; explore the OUCH site and the multiple internal links. Growing interest in "biologicals" but I'll let the younger crowd speak to you on this one.
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(This would be an excellent Christmas present for your doc!)

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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(Print this for both you and your doc. Current thinking nicely presented.)

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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(The first article mentions Zyprexa as an abortive. Several of us have found it to be an excellent abortive, almost equal to Sumatriptan in speed and much less on a per dose basis.)

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

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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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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Now--that will fill up your evenings for a couple of days!
Stay in touch; feel free to ask questions. Folks here have missionary zeal to help!

Bob,
Thanks for the info and reply. I seem to be missing or not seeing the 'buttons' on the left, as mentioned in many posts - maybe an issue with my browser or security settings. I have yet to log into the OUCH site, but likely will later on. I'll check over the links you attached as well. Not sure about your reference to 'biologicals' - I presume it has something to do with the inferences to sub-hallucinogenic or the 'seed' therapies some have mentioned - I most certainly am in no position to apply non-prescription meds to my efforts here, even if they were the one thing to provide relief, my career and my family are far to important to rely on any street remedies.
Thanks - Erik

Buttons are a series of boxes to the left of the message area. Sometimes hitting your reset button will load them or, if the messages fill you screen 100%, reducing the size (option on bottom-right of Internet Explorer) may help.

I find the reset button usually solves the issue for me.

OR: ouch-us.org

Erik Lensing wrote on Dec 19^th, 2009 at 3:01pm:

Bob, I seem to be missing or not seeing the 'buttons' on the left, as mentioned in many posts .

This happened to me and I've seen it happen to several others. Its a problem with the site that's not taken seriously, and a shame since links to critical info ends up missing for people who need them most.

To be directed to the proper view you could try clicking on the "horned devil" logo on the upper right or this link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Erik,

Correct me if I am wrong but on your list of abortives you have tried I don't see Imitrex/Sumatriptan injections. It is well known that only in this form this drug is effective against CH. This is also confirmed by many experiences posted on this board.

Of course each case is different but for most sufferers here, the first abortive of choice is oxygen. Imitrex a.k.a Sumatriptan is a "sure fire" mobile backup.

Both are definitely worth trying. Having an efficient way to chase away the beast radically changes one's life.

Welcome to the club, Erik,

I'm kind of new here myself.  There is a ton of information here and a lot of nice people that know a lot about this.  Seems like the affliction manifests itself a little differently for everyone.  All I can tell you is that this is the place to get the information.  Experiment with different treatments until you find what works for you.  My drug of choice during a cycle is Amerge.  I never knew about Oxygen treatments until I found this site.  I'll try that next time. 

I hope you find what works for you, and tell us all about it when you do.

Vica and Anchor Yanker,
Thanks. I have yet to try the Injection of any Triptan, have had the inhaler/nasal doser and tablets, no dice on either and the nasal dosage is some nasty stuff. After much review and further discussions my Doc has me returning to the Neuro (next week) to plot a treatment course as he is uncomfortable with the situation and believes I need to follow up with their office again. I hope to have the O2 approved and at home soon but will need an effective measure for traveling - the airports aren't real accomodationg to the bottled gas idea. I am presently on 100mg Atnenolol daily as a 'long term' - after the Neuro I hope to have a plan for abortive (02 and traveling pills or injections), abatement and with a little luck a good long term plan. Thanks to all and the site. Merry Christmas and Happy New Years. Wishing for and end to the cycle for Christmas - even if it is a few days late arriving.

Erik Lensing wrote on Dec 28^th, 2009 at 7:08pm:

...............I am presently on 100mg Atnenolol daily as a 'long term' - ...........................

If your doctor suggested this as preventative for Cluster Headaches, I would respectfully suggest that you find a more knowledgeable doctor or be prepared to educate him/her.

Beta blockers are sometimes used to treat certain forms of Migraines (not very effective), but have no use in a Cluster treatment program.

Marc

Hello Erik-
So glad you found us, sorry for CH.

I tried the imitrex pills and I thought they worked.  Didn't take but the next day and they didn't help squat. 

I just received my viles of imitrex liquid, and a box of insulian injectors.  I can choose my dosage.  Imitrex knocks my headaches out in about 2mg of a dose.  I only use the imitrex if I am out of the house, I always use O2 first.  Get the O2, it is a god send! 

Angela