I've been having ch's for the past couple of weeks, at least I think that's what they are, the doc at urgent care also thought so the other day. I have an appointment for a cat scan and then one with a neurologist next week. I have dealt with these things for probably 15 years on and off and am only now realizing what they are.

The really bad ones, 7s, 8s, 9s have only been about one every six days but lots of lower numbers through out the days between and a hang over kind of feeling for a day or two afet the sever ones.

My fiancé has been very supportive, we have been together just over 2 years and this is the first time she has had to see me go through this kind of pain. She and I have both been doing a bunch of research, independent of one another, and she has let me talk about the scary parts but she hasn't brought them up. It really helps a lot to have someone who is willing to learn and be supportive and not just dismiss it. The first one she saw was over 4th of july weekend and I don't think she understood what it was, hell, i didn't even know how to explain it except that it had happened before but not for a long time. Then I've had a few more and she decided to figure it out.

Well, aside from a little self history, I'm really glad to have found this site, it is sucks but is exciting to know I'm not going through this alone. I've already laughed a little and cried a little reading what others have said.

I'm 35 now and as well as I can remember these things started around 20 for me. I'm so glad to find something to help me explain what is happening even if there isn't a real way to fix it yet.

THanks for being here y'all.

If you think you'll be sticking around:

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. Follow this chain:    CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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If you have the option locating a headache specialisst would be you best long term bet. Even neurologists have meager training in headache. Unless you can confirm that the man you're going to see has experience in complex headache disorders, urge you to seek a specialist. Our collective experience with gen. neuros plus formal studies of their training behind this comments.
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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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Assuming you get a DX of Cluster, see the PDF file, below. Reflects the most current meds.
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You'll be offered a variety of treatments here. But suggest you don't get into self-diagnosis and self-treatment at the same time you're just starting to see a doc. Makes it impossible to know what treatment(s) you are using are effective. So, ride one horse at a time!
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Some sources for info about Cluster:


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.