Anyone use Extended release Verapamil?  Currently I take 80mg three times of day of regular verapamil.  I see the doctor tomorrow to possibly change my verapamil to the extended release capsule.  How strong is it?  My cycle started on May 2 on left side as normal - lasted for roughly 10 weeks and I had a 7-10 day break...thought it was over.  I was mistaken - it moved to the right side now.  Last cycle was 2005 and the same thing happened except reverse order.  SO I battle it with 1/2 zomig zmt's, oxygen 12 LPM and the verapamil.  I don't think this verapamil is helping...been on it since May.  This has been a long summer...I need a break.  :(  Any input is welcome, take care.  Conrad  

I was on extended release verap-  never tried the sustained release so nothing to compare it to. I did have several increases of my verapamil though- started at 480 then to 660- - I spread the dosage out like this-  240 in am,   240 around 2 or 3 pm , then 180 at bed time-  which was my magic dose- meds took about 1 week to notice a difference about 2 weeks to stop the hits but only after I got to 660 Cycle was longer than ever but I have no idea whether thats just the nature of the  'beast'  or whether verap extended my cycle.  I just know that once on the right dose of verap-  no headaches only shadows - quite of relief from hits 2-3 times a day.  My last cycle started in early march, didn't start verapamil to end of march early april  and I tapered off the verapamil in early june.  

1st off, 360mg is a relatively low dose.  You may simply need to go higher.  Of course you need to work with your Dr on this.

The first time I tried Verapamil I used the sustained release formulation.  It didn't work for me.  I've since moved on to the regular release formulation and take 400mg / day 120/120/160.  This worked well last cycle and this cycle.

The idea behind using the regular release is to be able to taylor the amount of verapamil in your system to the time of your regular hits.  You use the highest dose before that time.

The sustained release formulation just doesn't give you this level of control.

-Dennis-

I am out of cycle right now but my last Neuro appointment he gave scripts to have at my ready at the pharmacist for the next round. He scripted Verapamil at 480mg daily which seemed to work well for me with my last cycle. He also scripted me a Prednisone taper as well as sustained release Verapamil which I will probably not take as I am hearing mixed reviews on.

My 480mg Verapamil and o2 are my main line of defence so hoping this will work again if and when the beast returns. I guess it is all trial and error to see what works for each individual.

  Barry

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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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).

Hi!  we're new to this so bear with me.  My 14 yo daughter has been in constant chronic pain since Nov 07 which is bi-laterally located behind her ears.  this has been devastating for both her, and us (me (mum) and 12 yo sister) as a family.  this has been compounded by the fact that our first neurologist insisted on the pain being caused by TN and prescribing a cocktail of anti-epilepsy drugs and sending us go-knows where to see different people.  However, 2 months ago we got to see someone else in a different hospital who gave us a diagnosis of 'cluster-like headaches'.  he has prescribed o2 and verapamil (240mg over the 24 hrs.  Slight improvment til 10days ago as it seems to be worse.  Does anyone know when this med might start having a positive effect and/or any other remedies?

Many thanks in advance for any info.

Thinking of you all, sufferers and carers

I have taken verapamil.  For me it took between 1 week or 2 to kick in till I was pain free.  But I was taking 660 mg.  Many here take anywhere between 480 and 960 mg.

I have not seen anyone post that it takes 8 weeks to kick in.  Maybe time to visit the prescribing doctor again-

So sorry your family is dealing with this.  Say hi to your daughter and hang in there

kelly