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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> New off label trials
        
(Message started by: MR_JESTER on Mar 23^rd, 2008, 4:49pm)

Title: New off label trials
Post by MR_JESTER on Mar 23^rd, 2008, 4:49pm

Happy Easter!

I am back in cycle after 3 years of remssion. My Neuro has started me on Depakote and Verapamil. So far it's not happening for me. He has told me that there are two meds that are showing promise as an off label treatment fro clusters. They are: CYMBALTA and LYRICA. Has anybody tried these? I've checked on Lyrica, and it sounds like it has promise but I couldn't find much about Cymbalta in relation to Clusters?
Any ideas?

Thanks

Title: Re: New off label trials
Post by E-Double on Mar 23^rd, 2008, 8:36pm

Lyrica if I am not mistaken is used for neurogenic pain much like neurontin is.

From what I have read here it does not seem to show the efficacy that the researchers hope.

The same goes for cymbalta.

When it comes down to it verapamil, lithium, topomax appear to have the highest success rates with regards to Mainstream medicines

There are many who seek alternative treatments who appear to have a much higher success.

Good luck regardless what you try.

Remember to keep a very detailed chart with regards to pain, frequency and durations, meds and any other variables you may throw into the mix.

This will really help tell if things are working or not

Title: Re: New off label trials
Post by Ray on Mar 24^th, 2008, 9:02am

I can respond regarding Cymbalta. Cymbalta is one of the newer antidepressants. It is an SSNRI, Selective Serotonin [&] Norepinepherine Reuptake Inhibitor.

That being said, what it means is there will be more Serotonin and Norepinepherine [neurotransmitters] available within your nervous system.

That being said, it may or may not be helpful for preventing CH, but NOT in my case. It is helpful for my depression. Your milage may vary.

Be aware that TOO MUCH serotonin in your system can be a BAD thing [google "serotonin syndrome"]. All of the triptan medications boost serotonin, as well as melatonin (breaks down into serotonin).

I use Cymbalta, 60 mg 1x per day and Imitrex injections as needed. This does not cause any particular problems for me. I refused to take Buspar and the Psychiatrist thought I was nutz (duh! why do you think I was there!) fearing serotonin syndrome. Now I have insomnia, on top of everything else, and I'm NOT going to take melatonin either.

Your milage may vary, but please be careful, and learn about the symptoms of this potentially fatal syndrome.

Thanks for listening,

Ray

Title: Re: New off label trials
Post by lennycohen on Mar 24^th, 2008, 8:18pm

I'm doing the Depakote thing - along with Norvasc, lithium, and Topamax. Here's the deal for me: Depakote 500mg 3x/day, Lithium 300mg 2x/day, Norvasc 10mg 1x/day, Topamax 100mg 2x/day -

Here's the deal on the Depakote tho - the real cluster buster with Depakote is the 500mg IV - it took about 45 minutes to drip into my arm, the first 3 times, I got about a week pain free, the fourth one, I'm almost at 2 weeks - I still take all the pills, but the bolus really breaks the cycle for me withour having to go to steroids. If I can get thru another week without a headache, I'll start to taper off the pills ---

Title: Re: New off label trials
Post by purpleydog on Mar 26^th, 2008, 7:16pm

I just got off Cymbalta. My doc put me on it for something other than depression, as it was good for treating another condition I have. I used it for almost 2 years.

I did notice that after I started taking it, my hits weren't so intense, and the frequency was less, unless I went into a monster mini-cycle. I kept an eye on that part, and it helped for quite awhile, before it didn't help the CH anymore. But that was a bonus, because I wasn't taking it for CH.

I got off of it, because I got hit hard by one of the side effects, out of the blue, which is causing depression, or making already existing depression worse. It put me into a deep depression. I do get Seasonal Affective Disorder (SAD, a mild depression for me) sometimes in the winter, due to lack of sunlight, but this turned into way worse.

He stopped me cold turkey from the Cymbalta, and put me on another med I had taken in the past with good response. It was a rough 2 weeks coming off the Cymbalta, but I feel soooo much better now, like my old self.

There have been discussions about Lyrica here, and my doc wants to put me on it, to try it, but, not for CH. I'll see how it works out.

YMMV

Title: Re: New off label trials
Post by markinct on Mar 27^th, 2008, 4:15pm

Hi there,
I tried Lyrica for a month (I have a post out here somewhere when I started it asking if anyone was on it)
Unfortunately for me, it did not work...
Hope it can help you.
Starting a new med today Propanolol....lets see what happens... Verap and Top dont work.... neither does Cafergot. Hopefully this will

Mark