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Intro (Read 760 times)
stancel
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Intro
Jun 4th, 2009 at 3:19pm
 
Hello all. My name is Stan, and I am from Southern Louisiana. If there is such a thing as a "lucky" sufferer of cluster's I guess it would be me. I have been cluster free for 4 years. Between 1993 and 2005 I had clusters of 2-4 weeks every year. Mine always started in the last weeks of January or the first week of February. I remember like it was yesterday, that first year when I made it to February 14th without a headache. It was like being born again. Each and every year that feeling returns when the calendar hits the middle of February and I am still headache free.

I really wanted to join this board just to tell others that there is hope. I wish I knew for sure why my headaches subsided, and a really wish I knew they would never return.

As for medication, not much worked for me. Imitrex injections seemed to help a little if I took them in the very early stages of the headache. Oxygen was the same. But, if I woke up in the night with a full blown attack then nothing helped at all. My routine was to go outside and lay in the grass in the middle of the night and squeeze my head with all my strength. Sounds crazy, I know, but that is what I was compelled to do.

At any rate, I am here for ANYBODY suffering from clusters. I know the pain, and can relate to what you are going through.

Good luck everybody, and stay strong.
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Bob Johnson
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Re: Intro
Reply #1 - Jun 4th, 2009 at 4:34pm
 
Thanks for coming! There is so much info here: suggest you explore the buttons on the left and their multiple internals links.

A couple of items worth reading if you have not done much background learning:

 
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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These are the most current therapies:

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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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In Rozen's list, look for olanzapine (Zyprexa) as an abortive. It's no widely known by M.D.s but has been effective for a number of us as an alternative to the standard meds. The nice thing is that your doc can give you a sample and 1-2 doses will tell you whether it works for you or not.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.



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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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If you have questions/issues, be specific in asking: folks here like that approach....
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Bob Johnson
 
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Kilowatt3
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Re: Intro
Reply #2 - Jun 4th, 2009 at 6:22pm
 
stancel wrote on Jun 4th, 2009 at 3:19pm:
Hello all. My name is Stan, and I am from Southern Louisiana...

...if I woke up in the night with a full blown attack then nothing helped at all. My routine was to go outside and lay in the grass in the middle of the night and squeeze my head with all my strength. Sounds crazy, I know, but that is what I was compelled to do...

Hi Stan!

Jeez!  Whereabouts in South LA are you?  If I went out and laid down in the grass in the middle of the night they'd just find my skeleton the next morning, 'cause of the fire ants!  Shocked

Welcome to the institution!

Regards,
Jim
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Regards,
Jim
SW Louisiana

If "that which does not kill me, makes me stronger", then how come I always feel like $hit after every near-death experience?
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Guiseppi
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Re: Intro
Reply #3 - Jun 4th, 2009 at 11:44pm
 
Glad you found us, Bob's given you your required "homework" reading, so I'll just welcome you to the nut house. Here's hoping the beast has permanently lost your address. Read everything on the board and be ready....just in case! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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