Hello. I am a 27-year-old boy suffering from CH! it comes out of nowhere suddenly during winter. I just came across this site and I thanks god there is a place I can share my issues on. for me there are lots of problems CH causes. it comes out of nowhere suddenly during winter. the pain is so intense and the way my face looks is worse! I am a social person. love to be among people , also I am a teacher.when I get an attack, the way people look at me bothers me, and I have to get somewhere ASAP to be alone till it passes. I am really pressured! very few people know about CH so lots of people get suspicious to me. they think I am using illegal drugs! I sometimes find my career and social life in danger.  But by the way I am very strong and I just have decided to fight with it. I am here to give some of sufferer some advices that I am sure it works and even could cut the pain and stop it at all. I find it a duty to help people who are just like me suffering this killing pain.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Essential first step is to get a solid diagnosis. Headache of all types are not simple disorders; many mask some serious disorders which need to be ruled out. So, if at all possible, find a headache specialist. Our collective experience says a large % of docs lack training, skill, even interest in handling these troublesome problems so---
LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

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

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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 neither you nor us knows that you have Cluster, start doing some basic learning even as you seek a good doc. IF you end up with a Cluster Dx, you'll still find that we need to know about this disorder in order to be able to gain control over what will be a decades long issue. (No!, there is not cure--but there are effective controls, once you learn what/how.)
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Please avoid the temptation to Dx yourself and to start with self-directed treatments. This only confuses the doc in his efforts to diagnose.
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Having said this, print out the PDF file below and file away. Right now it won't mean much but as you start working with a doc these are the main meds used to treat Cluster. If some of these items don't come you way, it's a warning sign.

There is deep experience here and we are ready to help. However, when you write, get into the habit of listing meds, doses, frequency of use, when are asking specific questions.
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Be patient! Even with a good diagnosis, it will take time to work out a plan of treatment which works for you. Individual variability is the norm and so patience is grit are the tools of long term success!

Guiseppi wrote on Jan 26^th, 2013 at 10:26am:

  This sufferer is in Iran Joe.  They jop yer head off for using illegal drugs,  so yer advice ain't exactlly spot on.

        Potter

Importantly, Hope, we're here to pass on information about CH. What you do with that information is purely a personal matter,  but we give it happily so ask all the questions you please.

Only better days ahead,

Brian down under.