A Cluster Headache Survivor’s Story
A little over a year ago we saw a cluster attack on video. Here’s the same man talking about what he has dealt with and is dealing with as a cluster headache survivor. A must watch for anyone with cluster or their friends and family:
Thanks to A ClusterHead’s Life
12 April 2011 @ 7:55 pm
I suffer Clusters! I would piss on a transformer…legal or not!!….if it would do any good!
12 April 2011 @ 9:22 pm
James, thank you for sharing this video (and for linking the previous one, since I hadn’t seen it before). I’ve never encountered anyone who has cluster headaches before, so that was very informative. I really feel for him.
I really wish that halfway through it, though, he hadn’t said that with a migraine you can just go lay down in silence and darkness. I think that there are different degrees of migraine pain, and some can be extremely debilitating…
I know that before I had my neurostimulator implanted (they’ve improved somewhat since then), I’d have migraine attacks that left me unable to do anything but rock back and forth on the ground in so much pain. I can’t be in a room that’s too quiet or too dark, or it actually makes my migraine worse. There are times that NOTHING helps.
So, I think that MOST migraines are just rest in a dark quiet room (even if you need your abortives, or preventives + abortives), but there are those of us that have chronic debilitating migraines that wipe us out and nothing helps.
25 April 2011 @ 10:08 am
Hey Tom,
I watched your video and it honestly brought tears to my eyes- the video in which you have a cluster gave me an opportunity to see what I look like… you reacted the way I do…
Obviously, you and I have much the same experience with clusters. I went through 3 years straight, with several a day… fortunately, I do have some breaks between bouts now, sometimes months at a time.
They started when I was 19. I am now 43. I am going through a series of clusters, now, that started about 2 months ago and I am having about 8 a day. Many times, I am afraid to try to go to sleep because I know that I will get one then, for sure. That starts the chain reaction for the night.
I’ve had very little sleep.
I like to be in a darkened room that’s cool. Lately, I found that I sit on the floor and lean over into our slipper bathtub and just endure. Sometimes I get sick to my stomach. Mostly, I just don’t know what to do. Nothing we can do. I take Anacin, sometimes… I don’t drink and I don’t do any kind of drugs. I’ve tried some of the “so-called” abortives, preventatives, etc… but nothing has helped me, either.
I find that when I start to get “out of control” with and agitation, I fight to stay calm and breathe… every possible combination of breaths, through the nose out the mouth, through the mouth and out the nose, hold my breath… otherwise I could hurt myself. I’ve even put the couch on top of my head for pressure hoping it would somehow help.
I used to find going outside (in winter) and having a smoke or two would give me some sort of comfort… but not any more.
It’s interesting, we both have similar physical characteristics, same colouring, we look about the same size, same hairline… which reminds me, when I clench my eye during a cluster, even my skin and hair hurt… and hurt for hours after, too.
I totally understand where you are coming from. Not too many people can understand. This is not any ordinary migraine situation… and I can understand why they call them the suicide headache.
Glad you’re hanging in there, buddy. I am too. With the love of my family. It isn’t easy, but we have to hope they figure this out soon.
6 August 2012 @ 8:13 am
Thankyou for the opportunity to share. I too am a diagnosed cluster sufferer for eight years, maybe up to fifteen years. My best battle plans consisted of two Cafergot pills as so as you (I) feel that funny feeling coming on, it takes 30-45 mins. before they eliminate the headache, but that’s way better than the three hour norm! I also would fill a large ice bag and add just a little water and apply to face and head to help with the pain.
22 October 2013 @ 6:49 am
I didnt post this video here but this is me. I have several videos on YouTube. I am glad I can be the “poster boy” for this disease adocating awarness trying to give some insight to what we deal with. It was never my intention to seek pity but understanding. INitially the very first video I made over 5 years ago was made for maybe 10 people to see what and why. Now over 208,000 views, it just boggles my mind. Im glad I can be of help. I have no started a blog http://www.clusterheadsurvivor.blogspot.ca or follow me on twitter @ClusterHeadTom
thank you,wishing eveyone a pain free day
1 December 2013 @ 5:10 pm
Wow! Just came across this video. My husband, 65, has suffered from minor migraines for a couple yrs. now. But a few days ago, he got a headache and said it was like someone was driving a spike through the side of his head. We didn’t know what to think – a super severe migraine? the flu? a food trigger reaction as he has IBS and pretty sensitive stomach? Today he sees something about cluster headaches and says that sounds like what he has been experiencing off and on for about a week. Should he seek out a physician right away? He has seen one recently for his migraine (given an MRI). We tend to look towards self-help and alternative methods and prefer not to use potent meds ever unless absolutely necessary. We live in the Seattle area. Thanks for doing this video and bless you.
2 December 2013 @ 5:24 pm
ONly a doctor should ever diagnose, only a nuerologist, GP or surgeron should ever advise what meds to take and what to do. I only share my experiences.
I sincerely hope he doesnt have CH but as you say…certainly pointing in that direction with symptoms.
He is not alone, there is help….
advocacy=progress.
God bless
24 August 2015 @ 1:50 pm
This will probably sound horrible but I’m glad I found someone who understands the pain for about 6-7 years I have tried to describe the pain and feel like nobody believes its as bad as I say just wish doctor would