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Cluster Headache Help and Support >> Getting to Know Ya >> new here..looking for some help
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Message started by yankyfan100 on Sep 3rd, 2009 at 2:49am

Title: new here..looking for some help
Post by yankyfan100 on Sep 3rd, 2009 at 2:49am
hey everyone.. i finally stumbled upon cluster headaches last night after 6.5 years of suffering. no doctor every knew what was going on and i  never got any answers. ive been to a lot of doctors and one of the best in the world..but no one knew what was going on. i went from thinking it was migraines, to sinus headaches, to an aneurysm (that was loads of fun), and then the last thing was tmj. after reading tons about CH im almost certain it is what i have.  does anyone know any good doctors around westchester ny, New york city or boston?

Title: Re: new here..looking for some help
Post by Bob_Johnson on Sep 3rd, 2009 at 4:56am
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 Login or RegisterEND 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 Login or RegisterEND 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.
======================

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND 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]

Title: Re: new here..looking for some help
Post by Lefty on Sep 3rd, 2009 at 6:27am
Unfortunately most of us have to diagnose ourselves as our Gp's have very limited knowledge as regards to Cluster headaches. Another unfortunate aspect of this self assessment is that we are usually spot on with our own diagnosis.. So welcome on board and glad you found us....!

Gather as much information as you can from this site and you will be totally empowered when you next visit your Doc.


Lefty..!

Title: Re: new here..looking for some help
Post by YoungestMichael on Sep 3rd, 2009 at 10:27am
I'm new here too, but I have to say that Lefty is completely right. I suffer from these God forsaken headaches, and well.. Since I was 14 years old I've been put on so many medications it's pathetic.. For some reason, I got them at an early age.. and well, Until I was 18 years old, I thought they were REALLY bad migraines.. Till one day I found about the symptoms of other headaches.. Then I came to realize, "Hey! This is exactly what I'm going through.. Holy crap!" And then I printed out all the information I could on them, and summited them to my doctor, and now, I know what I suffer from.. :-[ I feel your pain, brother. I do.. Just do what Lefty said and try that. :)

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