Right now I am waking up every 4 hours +/- with a cluster.  Has anyone tried setting an alarm for like a half hour before it is "supposed" to hit and got up and walked around for a few minutes so that the sleep cycle is broken?  I wonder if this has been tried and would abort the headache?  After a week of this regularity I have to try this tonight.  Would love to hear experience with this.  Thanks!

I've never tried that but, I am an over the road truck driver. my waking and sleep patterns change from day to day. I have been awake when my time came and the monster still came right on time. However, I have been able to head it off while awake (for the most part). I have little exercises that I do when I start to feel one coming on. I am not on the o2 therapy but if I am able to go into a cold room and start breathing deeply I can keep it at bay about 70% of the time. The bad thing is that after the monster leaves even if it is not a real bad one I feel as if i have ran a marathon for a week straight.
What ever you do keep hanging in there. May Be one of these days they will discover what is the cause of the ch and, will be able to fix the problem forever.

Are you using a preventive med, such as Verapamil? Just treating attacks is not enough protection.
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Print this and share with your doc and see the PDF file, below.
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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I've aged out of having active cycles! A benefit of age..

Thanks for the drug info.  I am trying not to go down that road for fear of side effects.

No, I get them at night sometimes like around 8.  And then if I am having a bad day I will get them throughout the day, strong shadows  but not a major hit.  But this year, the worst has been the middle of the night.  (worst pain level)

Drug effects vs. side effects. It's a choice every clusterhead has to make.

seaworthy wrote on May 26^th, 2010 at 4:44pm:

Fine. Have it your way:

Drug effects on pain vs. side effects.

I just huff oxygen.  My mask is always at hand.

          Potter

MELATONIN!!!!

I have been taking 9mg of melatonin for two weeks and the last week have had hits 2-3 hours apart.  Not sure if cycle is peaking or if melatonin is not helping.  Wondering if I should taper off and then try again or increase dosage.  Haven't had more then three hours straight sleep in 17 days.  Starting to lose it!

Think I will try 12mg  tonight.  Whats the worst thing that could happen? Sorry of that sounds sad, but thats were I am right now

No difference with the 12mg last night.  Four attacks, all dealt with 02.  Might give it a couple of nights.  It at least helps me get to sleep which is difficult as I know I am going to get hit.

I'd like to add that just like our "on time" cluster attacks so should our melatonin dosages be taken.  I am in cycle and added the melatonin in March.  I started by taking 3mg every night at 8:30 pm for 3 days.  I added 3mg every 3 nights (all at 8:30 pm) until I reached 9mgs.  I had great results.  Just one week of 9mgs I was able to sleep through what normally would have been a 1 am and a 3 am attack.  My waking morning attack remains, but dang it's a no brainer that this is forward momentum that is IMHO worth adding to your cocktail.  What I noticed was if I missed my melatonin dosage time of 8:30 the middle of the night attacks would return AND as a bonus several of them!  These are kip 3-4 but the sheer number of them was exhausting!  So like "clockwork" I take my  melatonin now and have returned to the single attack upon "naturally wakening"   Meaning I wake up FIRST and then the attack comes within 3-5 minutes, I always feel PF upon waking!  I hope this is helpful to others just starting melatonin therapy!

jmac wrote on Jun 2^nd, 2010 at 6:09am:



Cheers to you!