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Cluster Headache Help and Support >> Getting to Know Ya >> new/introduction
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Message started by cl on Sep 18th, 2009 at 10:51am

Title: new/introduction
Post by cl on Sep 18th, 2009 at 10:51am
hey all- i went a year (2008) without any cluster headaches, but it came back hard the last two nights (1:30 and 5 AM) and it's the first time i have felt on the edge of complete terror/panic/can't deal.
first time this happened (2003) i wen't to a doctor who prescribed a weak painkiller- no help at all. herbalist friend gives be a tincture of feverfew, which maybe helps after days, i don't know.
the pain is localized to my right eye (which turns red, tears, etc.) and through my brain and skull from there. f'ing brutal.
anyways, i'm 29 and have a lovely wife and 2 young boys who try and take care of me through these episodes when i'm crippled by unreal pain.

Title: Re: new/introduction
Post by Bob_Johnson on Sep 18th, 2009 at 11:39am
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/introduction
Post by Ginger S. on Sep 18th, 2009 at 9:48pm
Welcome aboard Cl and sorry the beast is making you walk the plank again.

There is tons of info here make sure you keep reading everywhere on this site, and check the O2 page.

PFDAN to you!

Title: Re: new/introduction
Post by RichardN on Sep 20th, 2009 at 12:33am
Hi Cl and Welcome . . . sorry you're in pain

  Are you still seeing the doc who diagnosed you?  If not, do check out the link of  CH savvy docs that Bob posted . . . can save you a lot of time dealing with a doc who understands our malady.

  If you DO have a doc (hopefully you can get a quick appointment), you will want to go armed with info to help him help you and get you PF  . . . or at least in control

  Having some control is everything (for me) in dealing with CH.  Having that 02 tank at hand and knowing I can kill him in minutes before he ramps to the "dance" stage . . . have had two today . . . both killed in about 5 min at K-4 or 5.   

  We DO understand the very real fear of the beast! . . . "how long will it be before the next attack?, how long will it last?, how bad will it be?  When I came here 2/02, after 13 months of tests, mis-diagnosis, non-working drugs, was having 6-8 attacks daily, sometimes 3-5 at night, Kip 5s-9s, most 30-45 mins., some 1 1/2 - 2 hr horrors . . . was a basket case.  This place gave me my life back . . . I no longer fear the beast at the level I once did . . . yes, I still "dance" on occasion, but they're short dances and don't reach the levels they once did.

   Read, read, read . . . . have your wife read as much as she can (and join the supporters board which is a great help to our supporters in understanding this beast of ours).

    I assume you know your triggers? For me alcohol (most of us), exhaust fumes, certain chemical odors.

    02

      Be Safe,

        PFDANs


           Richard

Title: Re: new/introduction
Post by Lefty on Sep 20th, 2009 at 1:39pm

cl wrote on Sep 18th, 2009 at 10:51am:
hey all- i went a year (2008) without any cluster headaches, but it came back hard the last two nights (1:30 and 5 AM)


Welcome CL

Check out the threads on Melatonin.. ;)


Lefty..!

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