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Cluster Headache Help and Support >> Getting to Know Ya >> New here, Helps to know I'm not alone
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Message started by reality check on Jul 7th, 2010 at 9:34pm

Title: New here, Helps to know I'm not alone
Post by reality check on Jul 7th, 2010 at 9:34pm
I did read a post from another newby ealier, isn't it strange how all our stories are so much the same? I was wondering if anyone has had the botox injections or surgery and if so...any luck? in the 3rd week of a usual 6 week cycle and 100 mg. Imitrex only works half the time. Last night 2-1/2 hours and none of my old aborts would work!  >:(

Title: Re: New here, Helps to know I'm not alone
Post by Guiseppi on Jul 7th, 2010 at 9:51pm
No on both! Hopefully some with experience will be along to help you with those answers.

Have you tried oxygen yet? Has all but eliminated my dependance on imitrex. Read the oxygen info link on the left, a miracle abort for many on the board.

Do you have a decent prevent? Verapamil, Lithium, Topomax etc.? All are used by people on the board with varying degrees of success. I use lithium on cycle, blocks up to 60-70% of my hits.

Welcome to the board, see if we can help you out a bit.

Joe

Title: Re: New here, Helps to know I'm not alone
Post by bejeeber on Jul 7th, 2010 at 9:54pm
So you've been prescribed imitrex pills?

If you could get that prescription changed to imitrex injections, you'd have WAY better results aborting hits. This bit of info about injections will be critical: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Judging from a whole lot of reports I've seen from CH'ers here, using O2 as outlined in the oxygen info link on the left of this page has been MUCH more widely valued and successful than botox or surgery.


Title: Re: New here, Helps to know I'm not alone
Post by Ginger S. on Jul 8th, 2010 at 6:24am
No on both counts here.

Check the advice above on O2 and Imitrex injections, the imitrex pills are pretty much worthless to a CH sufferer.

Good Luck to you!

Title: Re: New here, Helps to know I'm not alone
Post by Bob_Johnson on Jul 8th, 2010 at 12:32pm
Start to explore the buttons, left, starting with the OUCH site. We all survive by knowing more than do our docs!
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See the PDF file, below.
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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]
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27 )

Title: Re: New here, Helps to know I'm not alone
Post by wimsey1 on Jul 8th, 2010 at 2:03pm
Ditto to everything, and double dittos on the pills. Except taken as a preventative (lithium, verapamil, etc) or as a transitional (pred taper) pills just do not metabolize fast enough to be of any use. I use O2, and a nasal spray (migranal) and I have imitrex injectables, but honestly, the O2 does such a fandamntastic job I only need that and a Monster energy drink. lance

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