Treating alzheimer's demetia AND potentially stalling out headaches?   Sounds tempting. 
Jim Lux

Hey Jim,
Val uses that for her CH, she was at the convention.

Don

I've never heard of this!  Sounds cool!
Does anyone have any literature or study links?

I could not find any med literature linking CH and this med.

IF the idea is to abort an attack, then it might be worth a trial on the assumption that you will know very quickly whether it's effective. IF the idea that it might prevent attacks, I suspect it might take some time before you can evaluate effectiveness. In this case, I personally would not use it unless the standard meds have been tried and failed to help you: I'm looking for meds with an established track record for effectiveness and safety.

A number of us have had excellent success using olanzapine as an abortive--and we knew witwh 1-2 uses whether it worked for me. It's an antipsychotic which was an almost total shot in the dark when I tried it--but it was 100% effective in aborting an attack--meeting the criterion I mentioned.

Hey Jim,

Just wanted to say a little about my experiences with Namenda.  I had already tried all of the main meds for my CCH, and many others as well before it was suggested I try Namenda (memantine is the generic).  The only med that was left to try was methysergide maleate, and my neuro didn't want to have a young person dependent on it for long periods of time having to take month breaks to avoid fibrosis.

As far as Bob's lack of finding articles, memantine has none that I know of for cluster, but there are a few out there for migraine.  I know that it has been used for migraine for years, and was told that there was a level of success using it as a preventative for cluster.  I am lucky - it works for my migraine AND chronic clusters. 

Here are a couple of articles I found on memantine for migraine:

Memantine in the Preventive Treatment of Refractory Migraine.
Bigal, Rapoport, Sheftell, Tepper D, Tepper S
Headache: The Journal of Head & Face Pain Oct2008, Vol. 48 Issue 9, p1337 6p.

Memantine for prevention of migraine: A retrospective study of 60 cases.
Charles; Flippen; Reyes; Brennan
The Journal of Headache and Pain, Vol 8(4), Sep, 2007. pp. 248-250.

My clusters are significantly less intense since I have been on memantine, but it did take me a month or so to get to a dosage that works - 15mg for me right now.  I also have fewer attacks.  I use as a preventative med, as I stated above - the first that has worked for me. Hope this helps!  I agree with Bob - try those main-line meds known for helping first! 

Val

Will defer to Val on this for CH, but it has definitely helped me in the chronic migraine (NDPH) department.  Did not see an effect for CH since starting it in the fall of 2008.  I take 20mg twice a day. (Alzheimers recommended dose is 10mg twice daily.)

Agree with the above - try the familiar before venturing into the unknown, but I haven't had any side effects at all with Namenda, which is a nice deviation for me. :)

Carrie :)

Thanks, all.   Since I get both, it seemed like a reasonable suggestion to make to my Neurologist as a preventative.  (Who knows?  It might help a bit with the CRS syndrome, being an alzheimers drug and all....).  I stopped topirimate earlier this week so that I could go to work with a clear(er) head, thinking-wise.  Still on Verapamil -- It may have reduced the number of hits during this cycle and it is now serving double-duty as my blood pressure medication.  Prednisone a few weeks ago was pure hell.  I'm nervous about lithium.  I haven't tried methysergide.  .  Abortives (oxygen and sumitriptan) are working well.  Bob, I'm curious about olanzapine -- I'll look into that. 

Unbelievably, my GP (via an email to me) tried to switch my sumitriptan prescription back to pills, "since I was probably getting close to the end of my cycle."  He was concerned that the retail cost to the insurance company ($1800) was too much.  I threatened to fire him if he made any moves in that direction, especially since I can/do use the shots for migraines. 

Jim

Or, should I give Lithium a try? 

Just give you my personal experience with lithium. At 1200 mg a day while on cycle it blocks 60-70% of my hits. The only side effects for me have been slight lethargy, easily remedied with a cup or two of coffee, and you pee a lot the first few weeks. Some on the board who have used it developed hand tremors, I did not.

Requires several blood draws the first time you go on it to determine doseage as it's not your body size but how your body processes it that determines dosing. Been a silver bullet for me for many years. If the other prevents fail you it's worth a try.

Joe

Dr. prescribed Namenda today, with a "pack" of pills that titrates up to 10mg/day over the course of a week. I'll give it a shot.  Maybe it will push the somewhat erratic/abnormal headache schedule over the edge an out the door. 

I'll let you know how it goes...

Jim  (up at 3am, just getting over a kip7-8 with only oxygen)

I have been on Namenda now for 6 months. I have not had a cluster headache at all this Spring or Summer. First time in 25 years. I am taking 10mg twice a day. I would recommend asking your Neurologist about it.  :)

Maybe coincidence, maybe namenda, I don't know, but my CH episode ended about a week ago.  I didn't want to jinx it by speaking too soon.

Jim

Yeah baby......that what I'm talking about. :)

Great news jim, hoping for a lifetime remission for ya! ;)

Joe

Woohoo!  Something new to ask the neuro about!   [smiley=clap2.gif]

It's in a class of drugs that's a little scary, with company such as ketamine and ibogaine... but certainly worth looking into.

Thank you!

Laurie