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New here, Helps to know I'm not alone (Read 741 times)
reality check
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New here, Helps to know I'm not alone
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!  Angry
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Guiseppi
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Re: New here, Helps to know I'm not alone
Reply #1 - 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
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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bejeeber
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Re: New here, Helps to know I'm not alone
Reply #2 - 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: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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.

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« Last Edit: Jul 7th, 2010 at 9:56pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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JustNotRight
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Re: New here, Helps to know I'm not alone
Reply #3 - 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!
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Bob Johnson
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Re: New here, Helps to know I'm not alone
Reply #4 - 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: 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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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (144 KB | 27 )

Bob Johnson
 
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Re: New here, Helps to know I'm not alone
Reply #5 - 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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