hello everyone,
i have just recently been diagnosed by my gp with ch. i cant tell you how emotional i got when i first checked out your site, to hear so many other people describing the exact pain i have been having over the past three weeks. i thought i was suffering from really bad sinus headaches until my visit to the emergency room two nights ago. i was awakened this morning at around 2a.m., with nothing more than a few vicodin to get through the rest of my day, i wont be able to pick up my first trial run of imitrex until after work.
 i dont mean to whine, i just want you all to know how much i appreciate what you have created here. i have done some research online, and you all have managed to really create a sense of hope , and i  thank you for that, charlie

Glad you are here so that we can help. First, using pain meds for CH is inappropriate and not main line therapy. Here are lists of current therapies.
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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:

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Mosts docs, even neurologists, have poor training and limited experience in treating complex headache disorders. If you have the option, here is how to locate a specialist:
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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.  Call 1-800-643-5552; 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.
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Print and read for your information:

 
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 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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As you have the time, explore the buttons on the left, starting with OUCH, following the internal links. Good basic learning.

thank you for that bob, i am printing as i write..
charlie

Mahala Charlie.    :)

Probaby spelt that wrong.

Welcome to your new family!  As you will no doubt find out rather quickly, this is one of those things that ONLY fellow sufferers can truly understand...this board is the best place to rant, whine, cry and commiserate, and no one here will judge you for it because we've all been there.  ;)

Let these folks guide you; there's vast amounts of tried-and-true knowledge to be sifted through on this site, and most docs don't know half of it (unless they specialize in CH.)

And yes, please try to avoid narcotics at all costs- first, they very rarely work properly on this kind of pain; second, a CH cycle can go on for months, and it's too easy to get addicted; and third, the folks here will kick your ass for it.  ;D

Read, read, read and good luck!
-Paige

Welcome to the board. My wife and I honeymooned in Hawaii in 1982...I'm still in love with it!

Bob's post is a must read, study, print and memorize! The best info for a starter, in no time you'll know more then most doctors about CH. You'll find your best results come from educating yourself, and forming a partnership with your doc to treat these things.

Danged glad you found us, hope we can help.

Joe

thank you guys i appreciate the support, i definatly dont want to deal with an addiction as well as ch
:D

Quote:

i definatly dont want to deal with an addiction as well as ch

Very intelligent man, Charlie.   ;)