Cluster Headache: Seeing is one step closer to believing
Hanging out on Twitter, I see a lot of talk about "cluster headache". Some people actually know what they’re talking about. But I suspect most do not.
Some seem to casually mention that they have a cluster headache today. Some mix up terms completely, saying things like cluster migraine. Or they say they have a migraine or a cluster headache or something.
I don’t get too upset at the people themselves, who are simply misinformed or uninformed. But having some idea what cluster headache is (though I don’t suffer from them myself), I still get upset that the term gets thrown around so casually.
Cluster headaches are also known as "suicide headaches", and there’s a reason. The pain is almost beyond comprehension.
I encourage you to read about the difference between migraine and cluster here.
But special thanks to A ClusterHead’s Life for posting some videos of people enduring a cluster attack.
I’ve posted one below, but I’ll warn you – it’s hard to watch. And it’s one of the less graphic videos. But if you want to understand cluster, take a look at a few of the videos here. You’ll never use the word casually again.
Also posted is a lecture on cluster by Dr. Peter J. Goadsby, coauthor of many books including Mechanism and Management of Headache.
Cluster survivor from Canada:
8 January 2010 @ 5:35 pm
Wow. Thank you for posting this. I am a migraineuse (fancy schmancy title) but my migraines have never caused *that* kind of pain. Very informative post.
20 January 2010 @ 2:04 pm
I’ve suffered Clusters for about 26 yrs. They started when I was 29 yrs old.It took 3 painful years for a Neuro to find it.No matter what they come around Thanksgiving and can last for several months. I usually have the 3 hr kind. Afterwards I feel like I have been beaten upside the head.It’s very sore and will cause another to come the next day. Standing up,breathing through your mouth only; helps some. The ones I hate happen almost exactly 2 hrs after I go too sleep.I’m seeing a Neuro once a month. I’ve tried many things. O2 does not work for me.I know it’s additive but I take [3] 10 mg.Loracets a day and a [1] mg Clonopin to help me sleep at night. Lack of sleep day after day will just make the clusters grow worst and not stop. Taking this medication keeps the headaches from getting a hold of me. The way I know the monster is out of the cage is too drink [1] beer and baby here she comes;pills or not. I have thought of suicide many times in the last 26yrs. As you guys know the pain is so EXCRUCIATING you think your head is going to explode and *** it’s for 3 to 4 hrs.sometimes.Dr.Goadsby seems to have it together over the rest of them. I plan on having it in my will to donate my brain to his research so that just maybe he can find a cure and save the rest from all this pain.Cluster Headaches have destroyed my career and made me a check to check worker with no insurance for testing. I did go thru all the test yrs ago when I had insurance. The Neuro is expensive and puts a strain on my small bank account. Please help the ones who still have a chance at a long prosperous life. Me;well I’ll hang around for my families sake
27 January 2010 @ 2:40 pm
My cluster headaches began in the 1970s, but I finally found an excellent neurologist and headache clinic with a hospital about 20 years ago who’ve made them manageable. Now I just contend with migraines and sinus, and preventives Amytriptylene, Topamax, Zoloft, fioricet for the little ones and Thank God for imitrex. I only have one or two small ones a week now. There is hope; please don’t despair. Not all neurologists or other doctors are alike–if you’re not getting helped, go to another, even if you have to travel to another city. I believe in pain medication too–quality of life is important. There’s prednisone and morphine short-term to break attacks, and even botox to paralyze the muscles in the back of your neck (tho expensive, at least it exists). I’m not a doctor, but I’ve learned a few things about migraines, and have two daughters who suffer from them, too. It’s not easy, but hang in there and look for a doctor you can partner with.
8 October 2013 @ 5:18 pm
Finally, after years and years in what I call the “Isolation Phase”, I’ve found a nonprofit whose dedicated to acquiring more funding from the NIH by going to congress. For 2 years, Clusterbusters nonprofit has been sending teams. They joined up with The Alliance for Headache Disorders Advocacy in an event called “Headache on the Hill”. The first year 12 clusterheads attended. Last year 19. We anticipate double or triple this year! Clusterbusters just held their 8th annual Cluster Headache Conference in Chicago. Over 125 fired up, overlooked, action ready patients and their supporters were in the audience. Please know that there are people fighting! Much #clusterlove #clusterbusters.