Hello all

Been years since I came back to CH.com. My episodics began when I was 19 and until I was 48 they would come and go throughout the years with few breaks in between. I've seen numerous neurologists and have run the table on prevention and treatment from O2, Caffergot,Verapamiel,Depakote,Prednisone,Stadol and even Oxycondone which I quickly got off of.
My clusters went chronic about 6-7 years ago with only a few days break between constant pain 24/7.
I have a new neurologist who is trying to break it with massive induction of prednisone, then he wants to try Lithium as a preventative.

My question is...has anyone had success with Lithium treatment? I've read promising studies but want to go for answers with my fellow sufferers. Any input from those who have tried Lithium would be greatly appreciated.

Take care, all those in agony and know there are old-timers who cringe when we read about cluster newcomers. We wish the "devil" had never found you! Hang in there!

Ted

Actually, there are quite a few folks here who've had good success with lithium as a preventive.  I'm sure they'll be along shortly to discuss their experience with it.

Meantime, welcome back to CH.com.  Some old familiar names you'll recognize, and many newcomers.

Best wishes,

George

It used to be one of two preventatives that worked very well for me. Sometimes I would have to combine it with verapamil (called the "chronic cocktail") if one or the other stopped working alone.

And don't misinterpret my use of the past tense - I've simply found another alternative treatment that works much better than either of these meds.

Hoping I never have to touch lithium or verapamil ever again.

I'm a lithium user and I swear by it! 31 years of CH, episodic, currently hoping to be coming to the end of a 5 month cycle that won't let go of me.

I use 1200 mg of lithium a day as my prevent. Takes a little bit of blood work at first to establish your therapeudic level as it's not so much related to your size as to how your body processes the stuff.  Takes about 10-14 days to become effective as a prevent, I do a 2 week prednisone taper during that time.

Once I'm up and running on the lithium it blocks about 70% of  my attacks, if I am strict at avoiding my triggers. For me that's alcohol, getting really hungry or massively screwing up my sleep cycles. The only side effects: You pee a LOT the first 2 weeks. Do pay attention when he tells you to increase your water intake. The slight lethargic feelng you may experience is easily overcome with a cup or two of coffee. Forget the Hollywood stereotypes of mouth breathing zombies on Lithium. :) If I didn't tell you I was taking it you'd never know.

Some, like Brew, found they had to combine it with Verapamil to get relief. It's often called the CH cocktail used for the really tough cases.

I hope and pray lithium gives you at least the same level of relief I've experienced.

Joe

Thank you George and Brew

Brew...I've been on 480 mg day Verap for about 15 years...afraid to go off it.

You mentioned an 'alternative'...care to share? I have actually tried an 'alternative' about six years ago while visiting Alaska. I was in agony while there and a friend took me to her acupuncturist, an older scholarly Chines gentleman who, in fact broke the cycle with one treatment. Needless to say I was elated. Three weeks later I slipped on the ice, just slightly hitting my head and the clusters came back. He was then on vacation and I had to leave with the cluster intact.

I've tried a new Chinese acupuncturist a few months ago not far from where I live, but have had no success.

I've always said the "beast" has a mind of it's own.

Thanks for the input..and glad to be back amongst family.

Ted

Guiseppi

Thank you very much for your description....makes me feel a lot better!

Hope I have the luck you've had.  ::)

TedD3 wrote on May 4^th, 2010 at 11:46am:

You mentioned an 'alternative'...care to share?

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Title:  Double Blind Comparison of Lithium and Verapamil in Cluster Headache Prophylaxis 
Author: Bussone G, Leone M, et al.
Date:  Posted: January 2010
Source:  Headache  30:411-417, 1990
Chronic Cluster Headache (CCH) treatment is troublesome; since there are no pain-free periods, it must be continuous. The most effective CCH prophylactic drug today is lithium carbonate but long-term use of this drug is limited by the possibility of side effects. Recently, calcium antagonists have been successfully employed to prevent migraine, and preliminary studies also indicate that verapamil in particular is an efficacious treatment for CCH. We have conducted a multicenter trial employing a double-dummy, double blind, cross-over protocol, comparing verapamil with the established efficacy of lithium carbonate, in preventing CCH attacks. BOTH LITHIUM CARBONATE AND VERAPAMIL WERE EFFECTIVE IN PREVENTING CCH BUT VERAPAMIL CAUSED FEWER SIDE EFFECTS and had a shorter latency period. We did not observe any correlation between plasma levels of the two drugs and their clinical efficacy. Both the drugs tested here may exert their effect by restoring a normal inhibitory tone to the pain modulating pathways from the trigemino-vascular system, a circuit putatively implicated in CCH.

Hi Ted.  I concur with Brew, check out the website and give it a thought.  Has been a winner for a couple years with me.

I have used acupuncture during two of my cycles.  Same guy, a teacher at the local Chinese medicine school who came highly recommended.  First time it definitely took the edge off of my pain but didn't stop it.  Second time, not so good, got frustrated, kept searching the internets and found the clusterbuster site.  Works like a charm if strictly adhered to. :-?(eyebrow dude for you, have a good day!)

--Shaggy

I've tried all sorts of drugs wasted thousands of dollars on pills that didn't work and dr.s that didn't
cure me or even ease the pain. Been having them since 1985 and finally found a dr. to give me a trigger point injection in my occipital nerve (occipital nerve block). Works every time for the last 12 years never
been more than two times for treatment and the CH are gone. Last vist lasted 29 months.
Just went to him in April after 29 months of no pain and after 2 treatments I am pain free for going on 2 weeks. Just a cheaper solution to all the high dollar drugs that are being used by other sufferers.
Check out my occipital nerve block topic on med and treatments.
Good luck and God Bless.

I've been on lithium about 20 months. 300mg off cycle, then 1200 mg 2 months before my "scheduled monster visit". I just started my cycle 3 weeks ago so apparently it didn't abort my cycle. I think I'll reserve my judgement and see how it goes . The only bothersome side effect I have is tremors, a little tough to write but manageable. I've used methylprednisone and dexamethasone with very good success, after 10 years of success with prednisone that stopped being as effective.

Hey Ted,

This Newsweek article is a good introduction to the sort of alternative treatment mentioned by Brew and Shaggy:

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