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Long/short cycles ? Coincidence ? (Read 884 times)
thunder1972
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Long/short cycles ? Coincidence ?
Jun 1st, 2010 at 6:47pm
 
Hi all-

Brief history:
1993-2005: CH hits only when I drank alcohol, cycles only last about 1-2 weeks - and come on every 6 months so I just didn't drink.

late 2005: beast hits during day without drinking; officially diagnosed, put on 180mg verapamil - pain free for 2 1/2 years

early 2008: beast returns- prednisone didn't help, verapamil bumped up to 360, imitrex, but beast hits so often imitrex every day is not advised, put on O2 at end of cycle, no big hits, but calmed those shadows - cycle over, back down to 180 verapamil daily

two weeks ago, after another 2 1/2 years: beast is back - at first only when I drink alcohol, but this time, I could drink a quite a few before it hits (where before just a drop would be my trigger) - got my first hit today after taking a short nap in the afternoon -

there was one difference with my verapamil this time (180mg) - the doc did not change my script, but the pharmacy now gave me the capsules instead of my usual caplets - doc says there is a minor difference in soluability

does any one know/think if the change in verapamil could of thrown me off or are there larger cycles which just happen to be particularly stronger -

I used to go every 6months until started on verap. now my last two cycles were both 2 1/2 years apart

any ideas ? comments?    thanks !
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Guiseppi
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Re: Long/short cycles ? Coincidence ?
Reply #1 - Jun 1st, 2010 at 7:25pm
 
I don't use verapamil but there is discussion about the slow release versus the immediate release...one is more effective then the other. Hopefully a verap person will chime in!

As the the changes......sadly one of the best known traits of CH is how it constantly changes. Makes cause and effect determinations so difficult. For years my cycle were 2-3 months, twice a year. Then I had a 2 year remission followed by an 8 month cycle

If you haven't already do read the oxygen info link on the left. Several changes in HOW we use it have dramatically improved the speed and effectiveness of it.

Welcome to the board!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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jon019
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Re: Long/short cycles ? Coincidence ?
Reply #2 - Jun 1st, 2010 at 8:09pm
 
Guiseppi wrote on Jun 1st, 2010 at 7:25pm:
I don't use verapamil but there is discussion about the slow release versus the immediate release...one is more effective then the other. Hopefully a verap person will chime in!



OK...I'll chime. Been using verapamil for many years. One time was prescribed slow release by mistake....I hesitated but decided to give it a try. BIG mistake....it was totally ineffective....

180 mg/dy sounds way low. I survive on 480/dy in low cycle and 960 in high....

Best,

Jon
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thunder1972
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Re: Long/short cycles ? Coincidence ?
Reply #3 - Jun 1st, 2010 at 8:18pm
 
thanks everyone-

usually the doc submits the script for verapamil electroically - but showed me it said "Verapamil CR" - when I picked it up from the pharamacy it said Verapamil SA - was like that for the last 5 years until last month, it was "Verapamil ER" and was in capsul form -

When the doc increased my dosage, and I went back to the pharmacy I spoke with the pharmacist - he gave the new dosage in caplet form and said that when I go back down to 180 all I have to do is ask for the caplets with the same script... it seems the pharamacy doesn't see any difference, but I am glad to hear that a little change like that could make a difference - well, not so happy, because it could of caused me to be in high cycle right now.

I have read many times that ppl think 180 is low - but it works for me in low cycle - doc upped it to 240, no affect, now up to 360 in just the last 2 days - I guess it takes 7-10 days for the new dosage to kick in ??

My O2 is coming tomorrow... I have never used it while in full cycle so I am crossing my fingers.
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Bob Johnson
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Re: Long/short cycles ? Coincidence ?
Reply #4 - Jun 1st, 2010 at 10:28pm
 
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.

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Bob Johnson
 
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