Since, I assume, you will be with us for some time!

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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Since there is some genetic factor with Clusters you and your father may wish to share much of what, I hope, you will be learning. 

Unfortunately, there is no cure for Cluster but the range of effective treatments has expanded in the last few decades so that you have an excellent change of leading a quite comfortable life.

We strongly urge working with a headache specialist, if at all possible. The lack of education/skill/knowledge among, even neurologists, makes it so important to find a well grounded 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. 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.

6. 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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Second line of attack is your personal knowledge. We have a good storehouse of experience & medical informaltion to share with you. Consistent reading of the messages is a good source; ditto for the buttons (left), starting with the OUCH site. A few sources to start digesting:
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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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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
(He also has a couple of books worth your attention.)
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Print the PDF file below. List of current treatments along with evaluations. It's a good tool to use in discussing treatment options with any doc.
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A new (for me) site which is 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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Now that you have run your flag up the pole here you'll be exposed to many different approaches to treating Cluster. Resist the urge to try a variety in quick succession for this works to block developing an effective program which works for you. The variety of useful treatments can be confusing until you get some basic knowledge in hand, hence, the value of finding a solid doc to work with.

Sorry you're here! and glad that you are.

What they said!

Seriously, you're young, mine started about 15-16 years of age. Never the KIP 10 killers, but all the other symptoms, red runny eye, runny nose, pain always on the right side behind the eye, I'd only get them Spring and Fall for a couple of months then they'd go away again. Back then, if I felt one coming on and could get to sleep, I could avoid the attack altogether.

Why do I ramble on? (Because I'm old and that's just what old people do!)  I say all that because if you do have cluster headaches, there is a very strong possibility the pain will get worse and the attacks will get more severe as you get into your late teens and early 20's. NOW is the time to get referred to a headache specialist neurologist, work through your symptomology, and get an accurate diagnosis. Don't wait until your first severe cycle, when you're getting hit 2-8 times a day, and you have nothing to treat it with. Then you waste time going to emergency rooms where they don't help you anyways.

Keep reading here and educating yourself, knowledge is never a bad thing, but be VERY careful using the internet to pin down a diagnosis on someting as complicated as your brain. We'll support you and help you all we can, but please consider that headache specialist neuro.

JOe

Hi John,  I'd like to add that everyone so far has given you good advice.  You may indeed have CH, but it is NOT a goof idea to diagnose yourself as there are so many headaches types and some have similar symptoms, not to mention your headaches could be something more sinister.

Quote:


What medication are you taking?  When you are having a headache can you REALLY lay down???

Linda