Looking for advice.  I just had the longest remission that I have ever had--thought they were gone--I know I know stupid of me.  The usual routine is after one shadow the cycle will slam me.  I have been sleeping terribly for about 2 mos. for some reason, then for the past week I have been waking up 5:15 am w/a shadow, I get up walk around, doesn't turn into full blown headache but will sometimes linger for quite a while.  Last night, I woke up at 3 am with a weird stabbing shadow that seemed on the verge of turning into full blown but didn't.  This does not bode well, only hope is that these haven't turned full blown as they always have in the past after only one shadow.  What do I do?  Do I have any chance of warding the cycle off?  Do I up the melatonin (presently take 6 mg every night out of cycle), do I take benadryl, just freaked cause I am feeling basically screwed.

If your experience suggests that a cycle is about to begin--consider starting a preventive now--Verapamil or whatever you have used.

Reviews of med studies says that Verap is more effective than melatonin.
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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'm with Bob. As soon as I think a cycle is starting, I'm on the phone to get an appointment with the neuro, checking my stock of prevents and aborts, dust off the oxygen tank and test the regulator, get ready to go to war.

DO NOT wait until your getting slammed to start all of this preparation, then you're behind the eight ball. Worse case scenario, you over-prepare and the cycle never really hits. Beats the hell outta getting creamed with nothing in your arsenal! Hoping it's just shadows and nothing else.

Joe

You guys thanks--that is very solid advice, I need to call the neuro, guess I was hoping against hope I could ward it off (wishful thinking).  And I WISH I had O2 but will have to get a prescription again.  Need to mobilize.  I am going to up the melatonin though, b/c I figure it can't hurt I have been sleeping like crap for quite a while now.  And Bob, thanks for the article--that is VERY useful information--thanks for posting it.  I will let you guys know what happens and hope you are all doing well.

Good luck with the 02.....it's definitely my security blanket! :)

Joe

Guiseppi wrote on Nov 9^th, 2010 at 1:59pm:

I'm with Bob. As soon as I think a cycle is starting, I'm on the phone to get an appointment with the neuro, checking my stock of prevents and aborts, dust off the oxygen tank and test the regulator, get ready to go to war. DO NOT wait until your getting slammed to start all of this preparation, then you're behind the eight ball. Worse case scenario, you over-prepare and the cycle never really hits. Beats the hell outta getting creamed with nothing in your arsenal! Hoping it's just shadows and nothing else. Joe

     Best post of all time.

             Potter

Well, didn't have to wait too long to figure out what was going to happen with the shadows...got hit last night at 1, 3, and 6 am!  Nice grand introduction from the beast--usually it only starts with 1 a night--DAMN!  Just waiting for neuro's office to open--get meds, oxygen and hopefully some sleep tonight although I am really not feeling optimistic.  Humbling to say the least b/c I really had started to believe they were gone for good.

Yeah, every cycle I have is my last one........then sure enough, the beast returns! :(

Good luck getting in to see the neuro.

Joe

For years and years, at the end of each Cluster, my sister and I have teasingly said our cycles are over.  It's a pleasant thought so we just go with it...and laugh.