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Buzza9030 is new here (Read 1177 times)
Buzza
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Lynn,Ma.
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Buzza9030 is new here
Jul 2nd, 2012 at 9:03pm
 
Hi,
I was diagnosed this afternoon but have just realized i've been putting up with this BS for 7-8 years now.
I just started my attacks last Tuesday night at midnight and wanted to drill a hole in my head again!!I haven't had an attack in 2 years I think.
Is this really how it goes?Only happens between May and August and always gets me out of a deep sleep.
I appreciate any advice anyone has. I have been prescibed sumattriptan in it's injectable form and can quite honestly say,I can't wait to shoot up if the MF'er of a headache comes back.
Thanks!
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Guiseppi
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Re: Buzza9030 is new here
Reply #1 - Jul 2nd, 2012 at 9:57pm
 
Welcome to the board Buzz. Yeah, it's a lifetime sentence, but there's  alot you can do. Did the doc discuss any kind of a prevent med? A med you take daily to reduce the number and or intensity of hits? Read this, print it out and sicuss with your doc:

Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.


Then read this link. Oxygen has all but eliminated my use of imitrex. Cheap, fast, no side effects, I feel beasty starting, I huff 02 for 6-8 minutes, beasty is gone:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Then check out our sister site, clusterbusters.com    They discuss alternative treatments. Continue to read on this board, knowledge is your best ally. Glad you found us.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Buzza
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Lynn,Ma.
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Re: Buzza9030 is new here
Reply #2 - Jul 2nd, 2012 at 10:02pm
 
Thanks Joe.
I might have to go break into a nursing home for theO2 tonight(hahaha)
I have to look into that.My insurance prob.won't cover but,I have connections.
Here's to a Freddy Krueger-free night!
I appreciate your help as i'm 41 and freakin clueless!
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Guiseppi
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Re: Buzza9030 is new here
Reply #3 - Jul 2nd, 2012 at 11:14pm
 
Some temporary fixes:

Energy drinks, rock star, Monster, I prefer sugar free red bull just for the taste, but any containing the combination of caffiene and taurine. Chug it down at the first sign of a hit. many can abort or really reduce a hit this way.

4way nasal spray. That's the brand name, works well for shadows and sometimes even attacks, snort up the affected nostril.

Welding oxygen is every bit as pure as medical grade, many here on the board use it. The biggest trick to getting oxygen to work is getting 100% 02 to your lungs, at a level to support hyper ventilation, started at the first hint of an attack. Like I said, my aborts run 6-8 minutes.

Go to the medications section of this board and read the post "123 pain free days and I think I know why". It's a simple vitamin/anti inflammatory regimen, pennies a day, healthy for you even without CH. It's proving a lot of relief to a lot of people, really worth a read.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Skyhawk5
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Re: Buzza9030 is new here
Reply #4 - Jul 3rd, 2012 at 1:46am
 
Buzza, welcome to CH.com. Believe me Joe has given you some great advice. Read all you can here to learn even more.

Knowing what State or Country you live in will help us help you. Please consider adding this to your profile. There is no spam or other contacts from this site.

If you haven't allready pls take the quiz on the link below.

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Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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Bob Johnson
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Re: Buzza9030 is new here
Reply #5 - Jul 3rd, 2012 at 8:08am
 


A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
======

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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Skyhawk5
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Re: Buzza9030 is new here
Reply #6 - Jul 10th, 2012 at 8:42pm
 
Hey Buzz,
Hope you are doing well? Thanks for updating your profile. This website has a huge amount of CH info from those who suffer the beast. It saved my life.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
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