NEED ADVICE : One week away from starting a new job.  Worst cluster cycle of my 20 years with it.  Seen the neuro, ramped up verapamil, trying lyrica, on the D3 (all levels normal) -- but getting worse and more frequent hits than ever before.  ALSO - last ditch effort to get some relief, prednisone 60-70mg starting dose and have been on that dose for ~ 1 week with no relief.  Already feel pain in body b/c of previous pred use this year, but really need a break.  Should I increase the daily dose to 80 or 90mg and go from there? 
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Trying to make an appointment with the neuro for this week (saw her last week) to see if I can just start lithium or something -- need some relief.
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Does anyone have any magic words to make me feel better about this situation?? Anyone been here before?  What do you do when pred doesn't bust until another stabilizer comes along?

Hey Bob-- sadly I don't sound like a pro today, but I am somewhat of one.  I'm seeing Dr.Bryson at the headache institute here in NYC.  I'm on:

600mg Verap (3x120 a.m. 2 x 120 p.m.)
D3 and various supplements
I'm thinking the calcium I recently started taking may be interfering with the Verap.
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I am seeing a cardiologist tomorrow for a standard EKG since ramping up Verap. 
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Have tried Topiramate, Neurontin in the past, no luck.
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I'm really concerned about the prolonged pred use as I've been on it ALOT the last year (i've heard some horror stories of broken bones, etc on this very board)
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The verapamil was working fine for me for years but stopped about 11 months ago. 
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Abortives - 02, Imitrex, Zomig.

Yes, I've been where you are. Not too long ago at that. There may be a couple of things worth trying yet...lithium, as you mention; migranal as an alternative to suma, having both on hand and your doctor trusting you won't violate the "don't use together in the same 24 hour period" rule; and maybe a nerve block, if you haven't tried that before. Because I'm chronic it's harder for me to evaluate your experience, but I'm generally looking for less activity and not so much a cessation of CHs. Feeling bad for ya, good luck and God bless. lance

Ref. horror stories about any med.   I used to live in a community where I quickly learned: never accept a rumor until it's been confirmed 6 times! Excess is easy; judgment takes discipline.

Re. Imip 1/3 dose. Have you used full dose a few time to see if an improvement? No savings if no benefit.

You have room for a real boost in the Verap.
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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.
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While you can't use it for long periods if you have daily attacks, it would be interesting to do a trial with this one--which several of us have come to appreciate. Might be an alternative to other abortives even if you could not use it for long periods.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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Hi Joshua,
366 days ago (8/6th) I started the worst cycle of my 33 yr episodic nightmare.  I was in a similar situation as yourself and learned Verapamil at higher dosage was my ticket to reduction of frequency and intensity.  I also learned the priceless value of hyperventilating o2 to abort attacks!

Good of you to get the cardiologist to check your heart.  Providing all is ok with your heart and your daily blood pressure is acceptable to your cardiologist, I would consider increasing the Verapamil ASAP. 

As for the Pred, if you are concerned; don't do it!

Good Luck!

-Gregg in Las Vegas

Another good reminder from Batch to look for that dang elephant. I'm still fighting to find my cluster culprit. I suspect I may be one of those who might have a co-morbid condition that's exacerbating my clusters because most of the usual cures (verap, topamax, D3 regimen with appropriate OHD levels) don't touch my CH yet. I recently cut back on many things in my diet but gosh, I really love gluten because it's a great meat substitute. For what it's worth, I'll try to report back on that angle if I'm able to cut it out.

Lance!  Thanks - will check get a script for that.  Started lithium today too.  Really appreciate all the support.