Hey everyone! Sorry my first post is so long. TL;DR version at bottom.

So, after a long remission, I am currently going through my
third period of cluster headaches.

The last two periods, I mostly just suffered through them. I tried a few home remedies, but nothing really worked. Luckily, they only lasted about 2 months or so each time.

Now, I'm about a month into my third period, I am back in my desperate, I will try anything to stop the pain mode. The main difference between this time and the previous periods is that this time I am an adult with a job, not a student.

I'm an expat living in China, so I thought, hey might as well go into a medicine shop and see what they recommend.

My Chinese is quite good (not fluent, but I always know whats going on). She offered me two different kinds of medicine. One she said was Chinese medicine, that would work if I took it over a long period of time. The other she said was Western medicine, and would work much quicker. I, obviously, went for the western medicine. It was a tablet with two ingredients, caffeine and some other ingredient that I didn't recognize.

When I bought them, I had just recovered from a terrible headache, so I thought I would pop a couple and see what happened. After an hour, my hands started shaking a bit and I felt a bit hyped up, but that usually happens when I have caffeine, so I figured everything should be fine.

The next two days, just before I knew I would be getting an attack, I took a couple more. Amazingly, one time it was completely effective, and the other time I only felt a bit of pain, but a completely manageable amount of pain. I was on cloud nine! I thought, wow, whatever this is, its amazing. Why doesn't everyone use this?

... So that night I went online and searched to find out what I had been taking. Apparently, its a drug that, while popular many, many decades ago as a painkiller, it "has been banned in most industrialized societies for its links to renal failure" and other adverse effects.

The one thing I can say is that it does make my heart race for a long time. Sometimes going to sleep at night is a bit tough, even ten or so hours after taking them.

So, any advice? I guess I have a few options. One, keep taking them, but only when I feel its needed (I have to be able to focus for work or the pain is really intense). Two, go back to the medicine shop and try the Chinese medicine she recommended. And three, just ride it out the way I did the last two times.

TL;DR version, I'm taking a crazy, banned-in-the-West Chinese drug that seems to stop cluster headaches but may have adverse short and long term effects.

I wish you luck, PipForver, cos surely you're gunna need it.

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So, any advice?

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It was a tablet with two ingredients, caffeine and some other ingredient Sometimes going to sleep at night is a bit tough, even ten or so hours after taking them.

Could be just the caffeine helping, but too much in the tablet.  You may get the same effects from a five-hour energy drink, but for five hours, or guzzle a 16oz Red Bull.  Red Bull was first marketed in Thailand for truck drivers under the name Krating Daeng, it should be in nearby China, too.

If you're desperate to try anything, try oxygen if you can get it there, you could make it through another month.





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some other ingredient its a drug...popular many, many decades ago as a painkiller, it "has been banned in most industrialized societies for its links to renal failure" and other adverse effects.

Painkillers are usually not effective with clusters, that part may not be even needed.   

You didn't mention, what is the name of the drug?

Humans have a wonderful capacity to deny realities which we accept as true and to plunge ahead and act in ways which deny reality. We refer to it as “magical thinking”—it may happen to someone, but not to me.

The consequence of this trait is seen in the tens of thousands of Americans who end up in the ER room (then to the morgue, for too many) because they disregard warnings about safety, dosing, mixing of whatever ‘magical’ med/product which crosses their bow.

But we will continue this way because it’s our “species nature” to do so as it is our nature to then find someone to blame for the consequences.

You might be talking about Ergotamine, i use them right before i feel an attack and usually they do the trick, however it has vasoconstriction capabilities that affect other organs, but  im willing to take the risk

I have considered the fact that it might just be the caffeine helping. Before I had tried using Red Bull because they sell that everywhere here, but the cans are very small and don't seem to have all that much caffeine in them. I wish I could find Monster or Rockstar. I recently got the idea that maybe I should go back and see if they sell just caffeine tablets. Or caffeine and aspirin or something harmless.

The name of the drug is aminopyrine. I don't want other people to run off and try to get some, haha. But here is the article that scared me:

jama.jamanetwork.
com/article.aspx?articleid=1165683

That being said, after taking them its like the painkiller stops all the pain in your body and the caffeine pumps you up and makes you feel energetic. So basically the exact opposite of how I would feel if I just suffered through a cluster headache.

Nevres wrote on Oct 30^th, 2012 at 7:28pm:

You might be talking about Ergotamine

Quote:

Apparently, its a drug that, while popular many, many decades ago as a painkiller, it "has been banned in most industrialized societies for its links to renal failure" and other adverse effects.

This description would not fit ergotamine. 

It does aminopyrine. 




This condition hurts, I don't know what to say.  

Espresso coffee?

How's the mushrooms in China?   

8-)

Hey there PipForver

Which part of China are you in? That's one of the good/bad things about China... you can almost any kind of medicine without a prescription from a dodgy pharmacist.

Looks like you've found something that works. I don't know if the risk of acute renal failure is preferable to CH though (many clusterheads would probably say 'yes'). Do they not sell sumatriptan there?

PipForver - since you're already in Chaina, why don't you try using Kudzu (I think in China they cal it "Ge Gen")? Some people claim it's very effective for CH, and it has numerous other advantages.

You could also try melatonin or the vitamin D regimen posted about on these boards. Batch and many, many others have been having great success with the vitamins, and they are all common ones so hopefully easy to get in China. And hell yeah, I'd be taking up their offer of the Chinese medicine as well. Might not work, but then again, it might!

This is my second post on this website. It is a little disjointed, I apologize.

For you guys in China, I too am in Shenzhen, PRC right now. Came for Chinese new year (my wife is Chinese) and will be heading back to the states at the end of March.
Hope that doesn't mean I get to have two episodes this spring.. yeehaa uuhh.

As an aside: Anyone who has a person as supportive as my wife is truly blessed in countless ways. I often feel very guilty when my pain manifests externally; I want so desperately for someone to relate to what is happening, to understand. At the same time, I wouldn't wish this condition upon my worst enemy. I Love you xiao Hong.

Been dealing with the devil since ~1998 Tried Kudzu as a strong tea a long time ago, didn't work for me. A German doctor who thought I had sinus problems, spinal alignment issues from sports injuries, and bad eyes, along with subarachnoid hemorrhage prescribed tramadol. I ate that stuff like candy for two weeks. It knocked out my CH, but it knocked me out too. AND, I had the Jimmy leg cramps for three days while kicking the stuff cold turkey.

After years of suffering and receiving bad advice, drugs, and misguided information I stumbled upon a perfect description of my (our) condition.

I just acquired a pretty serious preventative (topiramate 25mg, I'm dosing 100 mg/day), and it has been doing a good job compared to past episodes. I also tried to get Imitrex spray for abortive therapy, but no luck. Maybe the guy from HK has a Line? I did get Rizatriptan Monobenzoate, but haven't thouroughly researched so not willing to try yet.

If I can help you guys in the PRC let me know, I'll see what I can do.

MR

I feel a little stupid about this whole thing and in the future I hope to elaborate. ""Mamma says stupid is as stupid does."

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"Mamma says stupid is as stupid does."

She also says that life is like a box of chocolates.

Welcome to the board Chuh! I too am gifted with a fabulous supporter. She's the one that foundf the original CH streaming board and saved my sanity!

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 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!
Might negate any need for the abortives you find elusive over there! Also, please check out oxygen:

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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Glad you found us.

Joe

That's a nasty little drug. There's a reason it isn't used in the US. I would opt in favor of other antiinflammatory drugs (asprin comes to mind) before hitting that stuff. Good luck, and blessings. lance