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Thought I'd watched them all but somehow I missed this clusterbusters YouTube video.....until just a few minutes ago!! I've had the pleasure of meeting and getting to know almost everyone featured several times over the past 13 years! Be forewarned, grab a hanky or some tissues before watching as this video may result in eye leakage...

Wow what a dramatic, positive response to the gabapentin, AKA neurontin. CONGRATS! Especially surprising/unusual is how it seems to have taken effect on the first day. Are you still only taking 600mg a day? My experience with gabapentin was it took a good many days to kick in, but when I got to a high dose, coinciding with a high ECH cycle, it cut the frequency of attacks in half. That in turn allowed me to abort all attacks as I rode the cycle out, so it was of real help (since that cycle, I have found vitamin L to have restored busting effectiveness for me, so no need to go back on the gabapentin). While you swear by it, some do swear at it. I get the impression it could be a drug that we find ourselves having especially widely varying individual responses to. When I was on it I could feel that I was on a drug, kind of buzzed-ish, but hard to describe. I kind of enjoyed it, but not like I wanted to stay on it forever. My appetite became unusually ravenous. According to sources including this from NIH (I've only skimmed it) "it is crucial to raise awareness of gabapentin as a potential cause of depression, aggressive behavior, and suicidal ideation" Suicidal ideation in bold print, because it is a bizarre potential side effect that others have noted here, sometimes referred to as a "reverse survival instinct", and can be experienced even without any co-occurring depression or other distress (!!!). I caution anyone on gabapentin to watch out for this, and to resolutely keep in mind it is the drug talking - set any such thoughts to a firm ignore!

Its been a while, but for good reasons, 112 reasons! Long story short, gabapentine is working fo me, throwing my chronic CH into oblivion. The long story is that for the last few years I turned into chronic with heaps of medications trying to control >200 hits a month. My neuro suggested to take the Indomethasine to see if I could positively react to this and diagnose paroxysmale hemacrania. Went all the way up to 275mg but eventually after month of severe fatigue and other side effects we concluded I did not respond to this as I should be. Slowly decreasing the indomethacine, an old spinal injury came back into my life with constant pain in my lower back and leg. I was prescribed tramadol as a pain killer to get through the day and night, but oh boy, this did not work with my other CH medications. I couldn’t go to the toilet for days in a row, more fatigue and more importantly the number of hits increased, although not the severity. Had to stop the tramadol and eventually requested another type of pain killer, which was the gabapentine. Still I used the O2, verapamil, sandomigran, naratriptan, suma’s and now took another pill. After the first one in the morning, no hits during the day and night…that’s odd…well must be a coincidence. Three days later the hits disappeared completely, and I was only taking 300mg in the morning and evening. Then I started counting, 10 days, 20, a month, 3 months, and today 112 days without a significant hit. Happy days cause I am not so anxious anymore when the next hit will come, if I can go for groceries without my O2 and suma with me, or not. Every now and then, the cluster bunny comes around and shows it ugly face, a little O2 does the trick, but makes me realise it is not gone. It is well suppressed with the gabapentine, somehow there is a little chemical component inside that I needed. Neuro does not understand this as there is little medical evidence for this, but looks at me with a smile. He now advises his other patients in his top5, actually 4 because I am number 5, to take gabapentine to see if it has the same results as I have. Should you not have tried it, I can recommend it, but always be certain to consult your neuro first as this is an anti epileptic also used for neuropathic pain. Alex

I'm going to credit the appendage crossings for your getting through the Red Bull Rehab toot sweet like that.

That is wonderful Kat!!

I was the new guy here once, as were we all. And the information on this page changed my life. Keep reading, sign up an go to the cluster pages, ask questions. the people here are amazing

OK so apparently it's not not a preventive.

Gabapentin...I took it once cycle.....I called it my "Zero F**** Given" pill. Did dookie for clusters but I was in the best mood....didn't give a damn about anything. Don't worry, be happy come to life. Kinda freaked me out.

I started taking licorice root tincture ( Herb Pharm, 1:2) mid way into busting a cycle with RC. The seeds were keeping the bad HA's at bay but I was getting all my other symptoms. Licorice root would eliminate them either immediately or within about 10 minutes. I started with a two dropper full dose three times a day then, on Les' suggestion, only as needed. No other medication except RC. At this point I am feeling that the cycle has ended. Whether it was the RC seeds, licorice root, or both I can't say. But something stopped the cycle (ECH) for the first time in 25 years. Amazing!!