Hi,

First time posting here, just looking for some advice on my condition. Here is some brief history:
Started cluster headaches when I was 18, always left side, they would come once in the morning at around 9:30am - 10am, last 1.5 hours and then repeat the next day for 3 weeks, then go away for 6 months and then start over again.
They lasted til I was 29 and I never took any meds and just went through them with nothing.

I am now 34 and all of a sudden after a driving trip out west and right on the way back they came back. Now they are random, usually less intense but more numerous and I think caused by elevation change, just a theory but it seems too coincidental that it came right after a trip, anyone think that?

Anyway, this time I decided to get meds and I take verapamil for preventative and zolmitriptan for abortive. It is now over 4 weeks since vacation trip and they are still there, so I am starting to wonder if I am chronic now because it always used to be 3 weeks.
But I read somewhere on here that triptan meds increase the cycle time, is that true? Can anyone point me to experience with that?

I take 240mg of Verapamil per day in 2 doses, from searching around here, I noticed that that seems lower than most. If I am chronic, I don't mind the Verapamil but would like to cut out the Zolmitriptan because it's expensive and wonder if a higher dose of Verapamil would let me cut down on Zolmitriptan or just help in general?

Maybe I am paranoid but I have this nasty feeling that my meds are only just putting off the pain and building it up.

Thanks,
Dan

Cycles vary in length and intensity.  I have found that using triptans does extend my cycles.  As far as chronic condition goes, I wouldn't even bring that word up until you've gone a year without being pain free.  Different things affect cycle duration, and it varies from person to person.  I would urge you to read as much as you can and hopefully you will find some information here that will help you now and in the future.

I also beleive that imitrex extends my cycles....but when I'm getting creamed I'll still use it. Have you tried oxygen yet? Breathing pure oxygen will abort an attack for me in 6-10 minutes. It has all but eliminated my use of imitrex.

Your Verapamil dosing is low compared to what others here use. Increasing it may reduce the number of  attacks, but do not increase it without closely working with your doctor. It's a very high horsepower medication and can cause heart issues if you increase it too high or too quickly.

As to cycles changing their characteristics......yeah...that's the more annoying facet of the beast. In my 20's and 30's they were setting the atomic clocks by the beignning and endings of my cycles. Hit my 40's and they went all over the board.

Glad you found us, do read the oxygen info link on the left, been a life saver for many of us.

Joe

Agostino Leyre wrote on Sep 14^th, 2010 at 11:22am:

Cycles vary in length and intensity.  I have found that using triptans does extend my cycles.  As far as chronic condition goes, I wouldn't even bring that word up until you've gone a year without being pain free.  Different things affect cycle duration, and it varies from person to person.  I would urge you to read as much as you can and hopefully you will find some information here that will help you now and in the future.

But for abortive meds, there are the triptans and oxygen and that is it?

How long did the triptan extend your cycle, like just a week or some percent, I mean just a rough guess? I'd like to try oxygen but it seems very expensive - at least in Canada.

First time I tried it my 3 month cycle went 8 months. I say that with the following caution...the beast morphs so damned much establishing cause and effect is a crap shoot! ;)

Others in Canada use oxygen and I haven't heard the expense being an issue...hopefully one of them will chime in.

Joe

danmoliver wrote on Sep 14^th, 2010 at 12:33pm:

But for abortive meds, there are the triptans and oxygen and that is it? How long did the triptan extend your cycle, like just a week or some percent, I mean just a rough guess? I'd like to try oxygen but it seems very expensive - at least in Canada.

Yes, O2 and triptans are the most common abortives that you need a prescription for, there are may others available to you, hot/cold showers, coffee, red bull, etc.......  But by the far the best one is O2. 

As far as extending cycles go, before triptans, my cycles would usually go 2-3 WEEKS with 2-3 hits a day, peaking at about 5 hits a day.  After using imitrex I went to 3-4 MONTH cycles with 5-7 hits per day, peaking at 7-9 hits per day.  Once I discovered amerge and zomig my cycles were drastically shortened to 4-6 weeks with 4-5 hits per day (that has been for about the last 6 years).  I am going to try getting through the next cycle (whenever that may be) without any triptans at all and will keep that data to compare to the next and see what the average cycle length and intensity is without triptans and using O2. 

But I can honestly say that for me, imitrex is probably the worse thing in the world for extending cycles and having more intense hits more often, yes I know it kills the CH right away, but come on, making my cycle four times longer with 3X the hits every day, do the math, which would you rather have?  I know what my answer is.

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.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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See PDF file, below.

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I gotta say, that being pregnant I haven't used any tripans this cycle and it still lasted longer than usual. 

I usual cycle about 10 weeks and just finished a 12-14 week cycle.

I think some of the variability is just the nature of the beast...

Lettucehead wrote on Sep 14^th, 2010 at 11:46pm:

I gotta say, that being pregnant I haven't used any tripans this cycle and it still lasted longer than usual.  ..

The P-word could have a major impact on your cycle as well.

Yeah, I gotta say, I suspect you're right, Agostino.

Yet another perspective....

I retried Verapamil this cycle. It didn't work last cycle....well at least it didn't until I found a doc who knew what he was doing. I worked closely with my neuro and ramped up to 960 mg / day - which has me a bit sleepy and forgetful but ever so happily pain free.

Also I found that my headaches would hit 'like an atomic clock' until this past cycle when there were more of them, they lasted longer, and were all over the place. At first I thought I might be going chronic but am now pretty sure that its just how the beast is playing this time around.

as for abortives - O2 is my godsend and I only use the triptans when I have to. I don't like the feel of them even though they do kill the headache....but I'd rather get to O2. I save my imitrex for times when I can't get to O2 (like on a plane). I have not found any other abortive to work (for me at least).