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New to CH.com, Old to CH's (Read 428 times)
spacefish
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New to CH.com, Old to CH's
Oct 28th, 2009 at 3:42pm
 
Hi.  My name is spacefish, and I suffer from cluster headaches.

<Hi spacefish!>

I have suffered from these since my senior year in high school in 1992.  Every 3 1/2 years since then (with one exception - I had a nice 7 year repreive from 1999 to 2006).  Every morning at 9:30am in the fall, or 8:30am in the spring, a warming sensation soon gave way to stabbing pains behind my right eye during high school calculus.  I just wanted to be left alone  (hard to do in high school).  I didn't seek treatment until 1999.  I just assumed it was a bad headache.  At that time, I was diagnosed with CH's.  I had a cat scan, which was negative (no traces of wandering felines in my skull), and was given Imitrex tablets in case I had another one.  By the time I had gotten the prescription, that bout was over, so I never got to try it.

The CH's did not return again until the fall of 2006.  By that time, I had a wife and daughter.  My wife had never seen me in so much pain, but thought it was probably sinus-related, since it was fall - prime allergy season.  I went to the Dr. - different from the one that diagnosed it.  He prescribed percoset.  I did a little online research and found that narcotics should not be used to treat CH's - they can make episodic CH's turn chronic.   I had only taken 2, and they did seem to help, but I threw the rest out.  I got a referral to a neurologist nearby who specializes in CH's and made an appointment.  By the time of my appointment, that bout had ended, so I cancelled the appt.

It is now 3 years (about 6 months before my next scheduled round of headaches) and they're back early.  Not only are they early, they are occuring at unpredictible times.  The first one woke me up about 5am.  The rest have been at random times during the day.  AAAARRRRRRRGGGGGHHHH!!!!
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Bob Johnson
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Re: New to CH.com, Old to CH's
Reply #1 - Oct 29th, 2009 at 8:57am
 
Get thee back to the headache doc! Whether you are in an active period or not, developing a working relationship and getting a good history in his files is useful. Doc may be willing/able to give you an Rx for a preventive to use when the next cycle shows itself.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (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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Bob Johnson
 
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