I am an episodic cluster sufferer for 30 years with clusters of between 4-16 weeks every 2-3 years. Whenever I am in my cycle I found that the last 2 times I managed to get almost complete preventative help through verapamil, wioth the odd attack here and there, which is when Imitrex injections help me to relief pain. I am currently in a very hard cycle already for 12 weeks and am getting a change in my pattern, which is really nasty. Verapamil helped throughout most of this cycle (I have now increased my dose to 600 mg a day), but latley, also after I had to travel to another time zone (11 hours difference) I am getting attacks every night at exactly the same time (around 1:30 AM waking up with severe pain). I have never had this and it is debilitating me since the Verapamil does not seem to help any more. I am shooting a lot of Imitrex and am afraid that this cycle has changed as such that I may have a very long cycle with a lot of pain every night. My access to imitrex is limited and I will get to the stage of not having any.

Anyone with any suggestions, similar patters etc...?

PLEASE HELP - even telling me about your experiences helps as you all well know.

Thanks

BORIS

Morning Boris,

I have just been reading your post. My name is Sue and am 34yrs old, I have 3 Children and I've suffered with Episodic Cluster Headaches since I was about 15. My longest bout was 10 weeks and shortest 6 weeks, with my longest pain free period being 19 months. This is until July 2009. I am now a chronic sufferer and haven't had a "pain free" period since then. I am currently seeing a neurologist and he has upped my Verapamil from 360mg per day to 600mg like yourself, I am also still taking Prednisolone (since August '09). 60mg for 5 days reduced by 5mg per day till I get to 20mg then back to full dose. :'(. I also have Imigran Nasal sprays which I find easier to handle the side effects than those of the injections. The biggest help for me is the Oxygen therapy, as soon as an attack approaches I use the O2, and even when woken through the night with the beast at his worst i still feel it helps with the pain quicker than if I don't use it. Is O2 an option for you? Many Thanks for letting me ramble on, it really does help sometimes.
I hope you have lots of pain free weeks,months etc very soon :)

Over the years that I've been hanging out here your story has been a regular "feature" of messages. Meds work for a time and then stop--for no evident reason--and we have to start a new series of trials to find a replacement.

Two options: boost the Verapamil again (some folks use up to 900+mg) or try a few doses of the following.  (note the comment that it stopped the clusters for a few people.)
-------

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

--------------------------------------------------------------------------------

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.

Regrettably jetlag compounds the problem by sending the hypothalamus and consequently your inner clock into overdrive. I am chronic and due to my job have to do a lot of intercontinental travel and every time I cross significant time zones, I try (providing I am not there too long) to stick to my home sleeping schedule as much as I physically can. Melatonin (0.5-1 mg before sleeping) can help to regulate it somewhat.

CH, travel and jetlag in combo can be very tough to manage but considering that you will have the same issue to deal with on the way back, its worth a try. For me, at least for jetlag and adjusting, going east to west is easier than the other way round.

Yeah, one of the crueler traits of the beast. You get into a nice routine...(if you can call ANYTHING about the beast nice)....you get a great feel for how long a cycle will last, when the hits will come and what will work most effectively. Then he morphs. Your cycle goes 8 months instead of 3, the prevent stops working, it sucks.

Means your back to the drawing board. Time to try a new prevent, read what Bob posted, he knows his stuff, look into topomax or lithium as prevents. Some have found relief with the CH cocktail of Verapamil AND Lithium.

And read the oxygen info link on the left. Becoming HUGELY popular as recent changes in HOW we use it has dramatically increased its success rate. Cheap and no side effects. Hang in there.

Joe

Thanks for all your comments and suggestions. I am going to up the Verapamil to see if this helps in any way and form.

Have been taking Melatonin up to 9 mg and last night due to frustration of waking up every night at almost exactly the same time I took 12 mg - but still waking up with CH and having to inject.

Any comments on the waking up at the same time with CH and not getting normal sleep...this is incredibly frustrating and debilitating also for the following day.

Also having dull head with constant ringing noise...

Am just so f...up...and frustrated - this is taking my life away - again....

For the first 20 years I had CH, I never had a wake up call CH attack. Once I got to sleep I was safe. That morph happened in my 40's! The same time every day/every night, it's one of the traits of CH.

For the dull all day ache...what many call Shadows...try "Three Way Nasal Spray" that's the brand name. Effective for many. I use energy drinks to ease them, sometimes that'll help.

Joe

You forgot one of the Ways.

It's 4-Way Nasal Spray. ;)

Brew wrote on Mar 31^st, 2010 at 11:17am:

You forgot one of the Ways. It's 4-Way Nasal Spray. ;)

DAMNIT!!!! :)

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Tinnitus, or ringing in the ears, is one reason I had to quit using Verap.  I was using 780mg along with Lithium ?mg and the tinnitus got pretty bad.  It has stuck with me for about 5 yrs now although I have been off the meds.

As you try the other mixes for your cocktail keep Kudzu in mind.  I have found it to be as effective as the Verap and Lithium combo and without the side effects.  However, as you are learning, not everything works for everyone, and not for every cycle.  That is one advantage (?) of being chronic. ::)

Sorry you are getting slammed so badly.  It WILL end. 

Jerry

Careful with upping Verapamil continuously without your doc's knowledge and regular ECGs. Verapamil requires tapering and many here feel the fast-acting formula is superior to the SR (sustained release) version.

For Melatonin, for getting sleep and getting over jetlag only, low dosages of around .5 - 1mg are better than high dosages.