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2.5 years off... but it always comes back!


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Hi all,

long time absentee. 2.5 yrs cluster free. Off verapamil for 18 mo. Just changed doctors and was bragging about being CH free for so long...

hit me like a ton of bricks just before the snow hit in the U.K. a few weeks back. Hello Spring Time!

after a remission you forget just how painful your CH is. I would say I’m happy to be back.... maybe I’m just happy to have the support network I’ve relied on several times still be here, and with the same (and lots of new!) faces.

heres to you all! HazBaz.

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back on 240mg ER verapamil plus 80mg in the morning. 20000ug vit D.

No naps, alcohol, chocolate, processed meat, refuelling the car, woodwork, painting, going back to sleep after waking. For how long, I don’t know.

any new treatments, salves, chants etc that I should know about?

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I tried never to get too cocky about the fact that I'd been in remission for a long time.  14 years without a full-blown CH attack and no more than a 4-week bout of shadows in an 11 year period.  Sadly, in spite of my humility and decade of near-complete remission, the shadows came back with a vengeance last June.  Still no full-blown attacks to date but not sure how.  The shadow bout is now 9 months old and has ramped up really badly in recent weeks.  I have days like today where I constantly feel like attacks are trying to start.  I'm using 480mg of verapamil but am not sure that it's doing anything at all.

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Haz', I remember you, of course.  Sucks to see you again. :-)

Regarding verap, there are folks who go up a lot higher in cycle (960mg/day or more), and many people say that ER verap is not as effective as non-ER. (It could be that your doc is just starting you lower and monitoring, as should be done.) As you probably know, some folks will get a prednisone taper to deal with the pain while the verap is being started up.

Not much new that I can think of . . .  Razor has been reporting excellent results with B vitamins.  https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/   I think maybe the addition by Batch of Benadryl to the D3 regimen might be new (25 mg four times a day and 50 mg at night).  



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