Ongoing on a 6 month cycle here, my headaches started very dull nothing higher than kip 2-3/10 for 4 months ( usualy I have a 6 week cycle and they are gone) then went into (usual ) painful cycle kip 8 - 9 for 2 weeks, I then started  prednisone and verap. after tapering the prednisone for 2 weeks I Am currently taking verapamil divided 3 times a day at 80 mg for a total of 240mg. I am still getting the dull sinus type - shadow headaches.

My neuro. said I need to up my verap to end my cycle, question is will uping the verapamil end a cycle, I thought it was just a prevent and doesn't (end) a cycle. The headaches I am getting now at 240mg are very dull 2/10.  So in you guys experience with the verap. when your on it will it just dull the headaches down to where you still get kip 1-3 daily or does it block all headaches. Very confused here!!!!

It's not going to end your cycle. Many believe just the opposite - that preventatives like verapamil will actually extend your cycle. However, upping the dosage may, indeed, bring you better relief. Most CH'ers don't find relief until they're somewhere in the 480 - 920mg/day range.

Thats what I thought Brew. I am now in a catch 22 in that the headaches are dull again, so wondering if I should taper off the verapamil since I am at such a low dose (240mg) anyways. This cycle realy sucks, its like a bad sinus headache that always has me on my toes because I know what it can become.  Thanks,  Jay

The anxiety is the real killer. Kills us inside, as a person.

Maybe ride it out for awhile at your current dosage and see what happens. Talk to your doc about upping the dosage on a moment's notice if it gets worse.

Brew is right in my opinion. I wouldn't subtract anything at this point. Only after the shadows have been gone for at least a couple weeks.

I've had 6 month cycles for my last 10 and won't change anything for at least a month PF.

Don

For me it never ended the cycle, in fact it seemed to extend it by a few weeks (!) But that was a worthwhile tradeoff as like you I ended up getting a prolonged "dull" headache but much fewer really bad attacks.  Then eventually I only had shadows, for a while, then the episode ended.  Important to also keep taking it a while after it seems the episode is ended/ending. I used 260mg/day (and melatonin) though I am probably one of the luckier ECHers as mine come every 2 years and usually only 4-8 weeks. If you need to take higher I think its OK but do if you can get your heart monitored to be sure there are no problems as can happen with some folks at high V dosage (I'm sure you know this anyway).  Hope it is OK for you...I know what you mean about annoying having a constant feeling you are on your toes etc....but hey, its better than doing the Dance with the Beast no?  Try to stay positive, and good luck.

I started on verapamil in July with pred and got relief only at 480mgs per day and also was almost fainting all over but have stayed on it..I feel it has prolonged my cycle but have had only a daily annoying headache and not a cluster since 2 weeks after starting..I do need xanax to sleep..it does cause insomnia

I have never read about nor experienced insomnia as a side effect of verapamil. Just the opposite, in fact. Makes me a little tired.

Significant case study would be necessary to determine if Verapamil extends cycles.  In the alternative there is nothing to indicate that Verapamil ends cycles.
 
Verapamil (used alone or in combination with other drugs) is a preventative for treating symptoms, not the underlying problem.   Essentially its use/value is no different from any of the wide variety of treatments currently employed.  None were developed specifically to treat CH, but they somehow help.  They don’t cure CH or completely block attacks, but make CH somewhat easier to live with.

For now, the best we can do is keep an accurate journal and work closely with a Neurologist to make appropriate decisions regarding our treatments and how they affect us individually.


Burnt-toast
(Tom)

Suggest you print this abstract and give to 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).