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Cluster Headache Help and Support >> Getting to Know Ya >> H folks
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Message started by Underling on Jul 24th, 2009 at 10:31pm

Title: H folks
Post by Underling on Jul 24th, 2009 at 10:31pm
Hi folks! 31 year old teacher from South Carolina here. In the throes of one of the worst CH's I've ever had. Have never been able to find a doctor who could diagnose this, so I've done my own research for years to find out what the hell is going on with my head.

I"m in such intense pain right now that I've been hitting myself in the back of the head to take my mind off  of it.

I've got coffee brewing right now, hoping the caffeine will alleviate some of this...any advice for me?

Title: Re: H folks
Post by Bob_Johnson on Jul 25th, 2009 at 10:56am
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: H folks
Post by coach_bill on Jul 25th, 2009 at 12:08pm
Welcome,

          Get some 02, it is the best for stopping ch.

                                         Coach Bill

Title: Re: H folks
Post by Lefty on Jul 25th, 2009 at 5:13pm
Welcome to the board,

Most people on this site will use a two pronged approach whilst combating CH's. The first is known as a preventative, whilst the second is known as an abortive.

Preventatives : Verapamil, lithium,Topamax + others. These can limit the number of attacks that occur whilst in cycle

Abortive s : 02, Imitrex injections + many others. These can stop an attack from escalating or stop it altogether.

As a teacher you should have no problem in researching and  studying  information, so get yourself over to the medications and treatments section and do your homework. (We will be checking to make sure it's done... ;))

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Good luck and I hope you find the answers you seek....


Lefty...!


Title: Re: H folks
Post by Iddy on Jul 25th, 2009 at 7:50pm
Welcome!

The info you have been given so far is solid. It has been given by folks that really care.

Read as much as you can,digest as much as you can.

Wishing you all the best. :)

Title: Re: H folks
Post by Ginger S. on Jul 25th, 2009 at 9:20pm
Hi and Welcome Underling!

Hoping you find relief and a Good Headache Doc ASAP!

Wishing you a PFDAN!

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