I'm too tired to find the citation now, but there has been at least one open study of people using triptans as preventatives, for example before bed.

It might be one instance where one of the longer acting oral triptans might be worth it  (though pricey) if they work for you & the side effects are worth it.

Um....  if you're going to look this up it was titled something like "safety of long term daily use of triptans" or something like that and was focused on potential heart and liver damage  (none was found that was attributed to the triptans).

Apart from cost is the issue of total weekly dosing you are getting in addition to whatever you are using for a (daytime) attack.

Using a preventive, such as Verapamil, on a normal dosing schedule would afford protection 24-hrs. Melatonin at bedtime helps some. If you can get it, 2mg ergotamine SL just before bed, is a old timer which helps block night attacks.

But what is your Verap. dose? We are flying blind without some basic infomation.
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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.

I am on 180 mg twice daily of verap SR. Have done some reading that suggests IR is better than SR, so will ask the MD about that on Fri. Was tempted to chew my pills the other night to make them IR, but knew that was not safe.

I have not yet tried melatonin, but will read up on it tonight. Not sure if working shifts will be a problem in terms of regulating dosing..............

kika wrote on Sep 4^th, 2010 at 3:50pm:

Take what Bob provided above when you go.  This is the SR vs IR info you are referring to.  I followed the process outlined and had the best relief with Verapamil with minimal side effects.  It really works if Verapamil is going to work for you.

Good luck...

-Dennis-

I have had very good results taking triptans (best results w/ Relpax, but others, too) 45  minutes to an hours before sleep, sometimes for months on end with NO REBOUND.  Most mds say this can't be, but it is.  As soon as I stop, its either night time CH or all is ok,  If its CH, back to Relpax, if everything is ok, I stop the Relpax until the attacks start again.

The Neuro I have seen for about 20 yrs does say it is unusual that the triptans I have used for 7 or 8 years work this way and this well for me.  I am always on the lookout for rebound, and to avoid it try to mix things up w/ Frova, Zomig, etc.  Imitrix does not work for me in this context as it only lasts about 2.5 to 3 hours.  Maxalt does not do the job either, and does create rebounds for me. Note: the rebounds from Imitrex and Maxalt occur right when I get up in the morning and can be chased away easily with O2 generally. But I can take Relpax 100 nights in a row with no problem. 

So, perhaps I am an unusual CH case.  For instance, and somewhat less so now than say 15 years ago, but I am the rare CH person who can use narcotics to chase CH episodes away (generally 25-35 minutes).  My neuro tells me that she has had about 5& of her CH patients respond as I do or something like I do.  I have had rebound issues with narcotics (about once or twice/year maybe); but when I get the first, or sometimes second hint of rebound, I just stop taking them for a month or 6 weeks, and then I can use these meds agin.  My major limitation with their use is not being able to take even 1 Vicodin after about 9:30 pm or it will keep me awake, a trait I share with one of my brothers.

I suspect I will get a boatload of grief for this post as I have already hear in response to another pst I sent in that "pain management sucks," etc.  I would think, however, that folks would be open to others' experience and would listen to what others have to say.  We are all different and someone has to be at the end of the Bell Curve, right?  Would I prefer to not ever have occasion to take another Demerol?  Of course.  And there are months on end what I don't need to and don't take any.  Same thing w/ Vicodin.  No fun using the stuff.  Bad for the digestive tract; obviously not as benign as O2, etc.  But I can say this, it has saved my day many dozens of times.  Many many many.  Just last week, . . .oh, hell, I won;t go into the story, but one of those times where I just had to be somewhere for my daughter, and I was doing some public interactive speaking . . . .

I understand everything you re saying about narcotics, and like I said, my Neuro has found that they "work" (meaning efficacious abortion + no addictive behavior) for a very low percentage of her CH patients.  Would I recommend them as a place to start for others, no.  So many other good alternatives. 

I started using narcotis 20-odd years ago keeping them around and using maybe 3 or 4 times/month when I am caught in situations where I just can't get to my O2 or nothing else is working and I just need to override the circuits (this is the treatment that used to work, that doesn't much anymore.  When I am not having any CHs, the pills just sit in my safe in the garage.  When the HA start, I grab a few from each script and put them in childproof containers to keep handy, and like I say, although hardly 100% reliable, these pills have saved my gay many dozens of times of the years.  As often as O2?  Heck no.  About 1/10000th as much.  But an essential part of my arsenal just the same.

Ron--

I have used mushrooms and gotten relief, but not 100%.  My guess is that I would have, but it is hard for me to get all the meds that interfere with the receptor sites out of my system.  No problem for me to stop taking narcotics, but I also take topamax in a pretty hefty dose and it takes quite a while to titrate down and stopping the triptans at night would rob me of sleep. One time I thought I had everything pretty much out of my system and the best sign of that was I had a bit of a "trip" on the shrooms.  Nothing heavy or anything, but certainly not my normal state.  CH was improved both as the frequency and intensity, but no knockout punch.  I tried a week later, but I guess 2 or 3 doses of triptans in the interim interfered enough that I received no noticeable improvement.

I am sorry to hear that your son got so involved as to be hooked on methadone.  I have been involved for many years with someone who is an addict.  He was sober for 27 years at one point, then a neck operation ruined things and the last 8 years have been hell for him and everyone around him.  I wish you and your son the best.

You say you've tried to follow my posts and I apologize because they likely have been hard to follow.  This week has been a tough one, partly because I've been in CH hell, and partly because one of my best friends (he also lived just a couple of houses away) unexpectedly died as all of his best friends and family gathered to be in town for his son's Bar Mitvah (sp?).  So, I have not laid out an orderly CH history or anything.  My posts have probably been about as scattered as me in terms of being useful for other folks. 

thee reptile

Ron--

Thanks for the details about your son's story, and it's really great that it was a success story.  Very good stuff. A neighbor mentioned to me that Nat Geo had a segment on mushrooms and CH just last week on cable tv.  Have you or anyone else on the site seen that?

I appreciate your sentiments about my world these days. Thanks. Fortunately, I have a lot of love and support in my home.  In addition, I understand thoroughly that having gotten through everything else I've faced in life (2 extended comas, 3 brushes with death), these days, too, shall pass.

I've been posting elsewhere on this site about taking Ketamine (I thought I should as it seemed like no one had reported on doing so before), and as of several hours ago things were looking pretty grim as to its working as hoped for.  I'll wait until about 6 pm West Coast to make another assessment, but as things turned out, today was the best day for me in about a month.  No death grip killers, fewer attacks overall and I was actually able to leave the house twice.

Crossing my fingers and sending out good vibes to all clusterheads,

thee reptile

I thought abouut taking a Frova or an Amerge before bed, but last ditch effort with lithium as a preventative worked like a charm - took about a week to kick in, but then - pain free for many months now. FYI, I'm out of episode right now (I test with red wine), but I'm still takking the lith, to seee if iot keeps the next episode away - I'm due in Mid December.

Try lithium, if you haven't already.

LLenny

Some references about the prophylactic use of triptans for CH:

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Summary of patients' reports with prophylactic use of triptans (German)

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