CH sufferer since 1965. Started taking Cafergot for relief in 1978. Over the years Cafergot has worked well although I tried everything else that came along. Well, since it worked, Cafergot is no longer available in the U.S., they want us on Imitrex which costs more and anyone who has taken it knows it will probably kill you off sooner or later. I went to Walmart and bought "Jet-Alert" double strength caffeine for "when alertness is required." Cafergot is 100 mg (99 mg caffine), and "Jet-Alert" is 200 mg caffeine. For me it works better than Cafergot, much better than Imitrex, and a box of 16 is under two dollars. I always took two cafergot, so one of these is the same. It is nice to get free of the price gouging and the stuff with killer side effects. Hang in there, I am 68, 48 years with CH and they haven't killed me off yet.

It has the "caf," but none of the "ergot."

The energy drink I use has 85mg caffeine in a single serving, and I drink a double size then hit the O2. The advantage I think is the addition of taurine, 2000mg in a double. Many of us have found energy drinks to be helpful but by themselves I find they are not enough. blessings. lance

I have to go along with wimsey1 on the taurine. Just caffeine, such as a cup of coffee, has no affect on my attacks but caffeine/taurine combo works great to reduce the pain level and the length of time of an attack.

Welcome to the board Galen. In the 70's my CH treatment consisted of Midrin as a prevent, Cafergot and lidocaine as abortives! Thank goodness we've come a bit farther since then. First off, are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Energy drinks can be surprisingly effective for me when chugged fast enough and soon enough, especially for nocturnal attacks. A good double-espresso will sometimes do wonders for daytime attacks, as long as there isn't a strong trigger present.

I also always carry in my wallet a triptan in the form of soluble wafer. Almost as effective as shots. If the caffeine and/or taurin doesn't do the trick the triptan usually would, and the combination is clearly more effective.

Luttle is known about taurin from what I read, but there are many taurin receptors in the hypothalamus which suggests that it actually effects the abnormality of hypothalamic activity.