I'm pretty sure I've gone chronic from episodic, which is not great in and of itself, I've had about 2 years with no non-medicated freedom from CH.  Whenever I taper off this or that - it's back.  that being said - I was on Verapamil 480mg  and was totally under control for > 1 year.  But for some reason the CH is back now, and Prednisone 60mg -down by 10mg every 3 days for a taper to get some relief, which ALWAYS worked, is not working.
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Has anyone else experienced their regimen suddenly just stop working?  No other major life changes.

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.

Yes, it happened to me last year.  I was episodic in the past , but I was stuck in a cycle from November 2010 through January 2012.  Nothing was working for me.  Even Imitrex wasn't doing as well as it should have.  So I got some O2 (which worked for me for the first time, I had used too little flow rate in the past), and the I went off of ALL my meds for two weeks.  I started Batch's D3 regimen.  After the two weeks ended I restarted my meds which finally worked.  After a couple of weeks I was able to break the cycle.  I too, thought I was going chronic.

Going off of the meds for two weeks was complete hell.  The only saving grace was the O2.  But I firmly believe that getting off of the meds kind of "reset" the medications effectiveness.

After the two weeks and restarting the meds, they seemed to regain their effectiveness.

I have been PF since mid January, back to being episodic. 

So if you can manage it, I would recommend getting off of your meds for a short time.  Just get prepared first.  Get O2 and start the D3 regimen and get whatever OTC/home remedies you can find to deal with the HA's.

Best of Luck

John

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

It works quite well...  Better than 75% effective in preventing CH...  and it's healthy for you too.

Take care,

V/R, Batch

Quote:

Whenever I taper off this or that - it's back.  that being said - I was on Verapamil 480mg  and was totally under control for > 1 year.  But for some reason the CH is back now...

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.

Hey :) -- good question.  i was on verapamil for longer than year, and stayed on it, with virtually no hits.  After about a year (a year ago) I tapered off, and started getting hits again-- so went back up, to 480, and have been doing that for a year with virtually no hits -- until lately. . trying D3, Omega & Mg regimen today.

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.

All meds that I have been on verapamil, lithium, oxygen, etc. have all stopped working after a sucessfull run.  Frustrating.

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

Good Luck !

I4B