J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.


Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed] 
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Assume you are working with a good doc....

Changes in effectiveness/dosing of meds is a common experience here with no understanding about why.

Talk to the doc about doing another Pred cycle but with a higher starting dose; ditto for increasing Verap dose.

IF it appears to be chronic, then explore shifting to Lithium.

Bottom line: such changes require some educated guessing and changes in the treatment plan but, unfortunately, no single treatment program works for all.

Thanks! I haven't read (or I don't remember) reading about D3. I'm going to read up on it now.

Quote:


A question that occurs is whether you maintained taking the 480mg of verapamil during a period when you were out of cycle, when you said it was "totally under control for > 1 year" and then tapered off, "I was on Verapamil 480", when you again went into cycle.

Restarting verapamil again may take a time to build up in your system and might require gradually getting to a higher dose than the 480mg, say 640mg, to catch a runaway cycle before it can be controlled.  Afterwards, testing whether a reduction to 480mg will maintain this cycle for you again might be attempted.

Along with the prednisone, restarting the verap with gradual increases to 640mg may be an idea, check with your doc, but having oxygen, an essential abortive, during this time can be essential.  You don't mention having any abortive to use in your post.  Any preventive regimen should be accompanied by an effective abortive to handle fluctuations of a cycle until adjustments can be made, and attempting to get on top of a cycle that is having free rein with you while restarting a preventive regimen including verapamil can be a difficult time, abortive use should be mighty handy, as Indiana John mentiions.

This is just one possibility.

I would echo what the others are saying. Read up on O2, D3, and Lithium if you think you are going chronic. I would also recommend perhaps making some dosage adjustments to your present meds and see if that doesn't produce some positive effects.

Be sure to talk to your doc before increasing Verapamil. As with many meds, it can be very dangerous.

Good Luck !

I4B