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New to CH.com...intro. (Read 621 times)
Cruz
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Out w/ the Nu in w/ the
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Jax, FL
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New to CH.com...intro.
Sep 20th, 2009 at 6:05pm
 
Just registered & I'm so glad I found this site.

My name is Manny, I'm 34 & have been diagnosed w/ CH's since I was 17.  I usually get a cycle every year in the summer that lasts about 1 month.  But the last time I had a cycle was nearly 3 yrs. ago now the beast is back & I'm currently in a brutal cycle that has been going on for 2 mo. now w/ 3-4 episodes a day. 

I've used Verapamil before & I'm currently on it now (240mg a day).  But it's not working for me, my doc is working on getting me a O2 tank but we're having to jump thru hoops w/ the O2 company & our insurance to get it.  So in the meantime I've been using Imitrex injections which work great & fast but I'm going thru them like candy.  It's the 1st time I've ever been prescribed an abortive treatment & as much as I like the instant relief, I don't like the way it makes me feel.  And  it seems like the episodes are more frequent & intense since I've started using the injections. 

I really hope the O2 gets approved so I can try that method & I really hope my cycle ends soon.  This cycle on top of being in the 1st phase of paramedic school has made life very tough lately.   

Anyways thanx for letting me introduce myself & vent a little & any advice on the O2, Imitrex or CH's in general would be appreciated.
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« Last Edit: Sep 20th, 2009 at 6:19pm by Cruz »  
http://www.facebook.com/manny.malig  
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Lefty
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Re: New to CH.com...intro.
Reply #1 - Sep 20th, 2009 at 7:30pm
 
Welcome Cruz

I hope you secure the 02 sooner rather than later because it will definitely change your life for the better. Personally I use the Imitrex injections as a last resort,but hey, they sure do work fast..

Good luck securing your 02...!


Lefty..!
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"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
— Flann O'Brien
 
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Iddy
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Toronto,Canada
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Re: New to CH.com...intro.
Reply #2 - Sep 20th, 2009 at 8:10pm
 
Hi Cruz.....hope you get the o2 as soon as possible.

Tried and true, I hope it works for you!

All the best.
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Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
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Bob Johnson
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Kennett Square, PA (USA)
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Re: New to CH.com...intro.
Reply #3 - Sep 20th, 2009 at 8:33pm
 
Verap dose is likely too low...
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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).
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And use correct form:

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.
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Bob Johnson
 
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