Hi everyone,

Thanks so much for all your posts.  I'm 29, and had my first ever cluster headaches starting in early October.  The last time I was at the neurologist-- about 2 weeks ago-- things were looking good, and we agreed I would finish up my supply of verapamil and hope this cluster period was over.  I still have probably 10 days left.

Anyway, I've been feeling perfect all week, and almost perfect the week before, so I thought my cluster period was over.  I hadn't drank since the first attacks, but I had a drink last night and one tonight.  I feel like I triggered a headache.  I got on oxygen before anything went crazy, but the side of my head is a little tight and tingly.

My question is this: does all this mean my cluster period wasn't over yet, or did I trigger a new one?  What is everyone's experience? 

I was really hoping that everything was over and these headaches were just something that I would have to deal with once and never really again.    Or at least once a year!  I feel like I just don't know how to judge it at all.

CaitieV wrote on Dec 4^th, 2011 at 12:55am:


Hi CatieV, and welcome to the group.

I'm really glad to hear you got properly diagnosed so quickly, and like Mike said, on the right preventative and abortive right away. Many people go years without getting that far. Perhaps the medical world is getting a bit better at understanding the demon.

Now the bad news. Your comment above, where you don't know how to judge it. Get used to that. Clusters aren't like migraines or headaches, where they are the same all the time. I know, you'll read in the literature that Clusters happen the same time of year, for the same period of time, yada yada. And that's true, in some cases, for awhile. But equally true is that just as soon as you figure out the demon's game, the demon changes the rules.

And each and every person is different. Me, I'm fine with alcohol. Doesn't negatively affect me a bit. But 95% of the people I know, it'll trigger a cluster.

So, hang in there. You are amongst friends. Read everything you can find, and I would recommend starting with the 123 days PF thread under Medications. It's a small novel, but worth the read. But, prepared for the clusters to change from time to time.

Good news though, is there are many options. And when the doctors run out of ideas (which they will), we have quite a few of our own.

Renée

Yes, general rule is that alcohol followed by an attack suggests the cycle is not over.

Re. Verap: very possible that you dose is not high enough. It may take several adjustments, over some weeks, to find what works for you. This is our best preventive but patience is important.

Suggest you print out this protocol and discuss your options with the doc.
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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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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.

Hey, sounds like we have similar experiences. When a cycle starts for me, I go through a couple/few weeks of days with CHs and PF days. During cycle (6-8 weeks) if I stand next to a glass of wine it triggers a hit. Also, that hit his guaranteed to be a kip 9-10. So I don't drink during cycle.

At the end of the cycle I'll have a 2-3 week period where I'm PF, but alcohol can trigger a hit, but maybe 50%-75% of the time. Otherwise, I'm effectively out of cycle. After all that, I'm fine til the next cycle. When out of cycle, alcohol never triggers a hit.

We are all different. Your experience says to me you are just not quite out of the cycle yet. You should be out soon. You haven't kick-started a new cycle.

Good luck!

there are probably only 2 positives to me of having CH.

1. Alcoholism runs in my family and I do love my booze hence my screen name.... I am an episodic CH sufferer so every year or 2 (current pattern) I have to go cold turkey for a couple months so CH has probably prevented me from taking my drinking to the next level.

2. The other positive of CH is that it teaches me to never take my PF days for granted or my health in general for granted and live every day to its fullest.