Just out of boredom/curiosity, what do your cluster headaches feel like? How do you describe it to others?

A lot of people compare it to a hot poker in the eye but it doesn't quite feel that way for me. I'd describe it as such:

Imagine shoving a metal pipe into your right eye until it reaches the top of the head. Now connect the pipe to a gas cylinder and increase the pressure inside your head until the eyeball is about to pop out. Finally, connect up a car battery to deliver electric shocks directly to your brain.

Mine has always carried that trademark prelude that had a burning sensation much like getting water up your nose. These moments are just the "calm before the storm". On this has reached its highest point, that's when the real fun begins. I used to believe long ago, that if you take pain medication before you reach this point....you would be saved. For me, there are 2 types of pain going on.first, the really sharp and deep stabbing pain. Sencondly, the throbbing pain that usually isn't equal in intensity. Make no mistake its still more pain than I have ever known. Each of my headaches have different levels of their attributes. Sometimes they are very weak in comparison to how some of the others can feel....but they are still WAY worse than your typical run of the mill headaches. When "the bad ones" hit, it always puts me in a "any port in the storm" style of demeanor. Once it reaches a critical mass, I am not longer able to fully open my right eye and if I do.....landing on the floor is imminent. Find myself feeling my way through the house as if I am completely blind. Sometimes I seem to lose my sense of balance. There are other factors thathat contribute to mine. If I have the windows open in my house and someone opens the door, the intensity. Light, sound, people forcing me to answer the "what can I do to help you" question, etc. So to answer your question about how I would describe my pain? Starts with a burning sensation at the back right side of my head for about 5 minutes. The the sharper shooting pain behind my eye, then the throbbing deep inside of my head. Sometimes they are "mild" and last only 10-20 minutes, others are unbearable and can last for up to 1 hour and 45 minutes.(I never had one last for over 2 hours). As I mentioned several times before, a lot of things can alter my CH's level of intensity and duration. I know this no matter how it lasts or intensity.....its is too long to have to tolerate that kind of pain. Before I got these headaches, I never knew that pain could get this bad. When they do finally let up the relief is unequivical, but there still the hangover to endure.

ClusterHK wrote on Nov 20^th, 2012 at 7:00am:

Don't know if that would work for me. My clusters are always on the left and my brain freeze is always on the right. But, I have often used the ice cream headache as an example of what a cluster attack feels like, only much more painful and last a lot longer.

I remember years ago when being misdiagnosed and not knowing what CH were telling my doctor that when I get woke up each night with it I would rather have someone come into my room every night and break all my fingers while kicking me in the balls and it would feel 10x better than what happens behind my left eye. I explained it hurts so bad I roll on the floor clutching my head moaning and my eye turns red droops like I am having a stroke and it feels as if someone is trying to rip my eyeball out from behind untill I cry and pray for it to end.  He looked at me like I was crazy and said "They wake you up???" 

Unless you have CH's they are truely hard to explain the pain we go through to anyone since once we do they think were over dramatic and then the conversation turns into the "Dopiest responses to CH" thread of answers.
When asked now I say
Twenty minutes of a 4 sided razor tipped burning arrow entering your head increasingly opening to a twenty minute Claw grabbing behind your eye and twisting of the worst pain imaginable to twenty minutes of it closing back up and leaving your skull. Then your left with a shadow that feels like someone has kicked you in the head with some steel toe boots for and hour, and a sore swollen gushy feeling on one side of your head like when you sprain your ankle. That about sums it up for me.
-Brian

(From the archives of ch.com)


Staring at an empty page,
Pen in hand, mind all black.
The beast is prowling, hear it growling,
Circling ready for next attack.
Too scared to sleep, too weak to weep,
Cowering in fear of what's ahead.
I know it can't kill me, but still it can fill me
With terror unquenchable, bottomless dread.

No second chances, the monster advances,
The stalking's over, it's time for the fight.
No ducking or weaving, just bucking and heaving,
The claws have sunk in and now comes the bite.
The lashing, the crashing, the gnashing of teeth
As my skull slowly crumples, bone torn apart.
Talons of fire take my eye entire,
It's merciless, endless, cut blind to the heart.

How long has it been, a minute? A year?
Where am I? Is it over, or just a reprieve?
I know that it's out there just watching and waiting,
And gloating, and hoping I'll really believe
That it's gone for ever, in future to never
Come back to attack, where-ever and when.
I'm beaten, defeated, the beast has feasted,
Again, and again, and again and again.

Wow Batch that makes me wince and brings tears to my eyes just looking at it.

I use the brain freeze analogy. I tell them to imagine a brain freeze, that keeps building, then sustains for 90 minutes!

Joe

Mine starts as a dull pain above my left temple and gradually builds almost feels likes a sinus headache and at first the only way I know is to press on my left eye if it hurts along a certain line I know its a CH coming. Within a few min's my temple starts to burn and feel likes pressure building up and my eye starts to feel like a nail is being driven through it from the inside. From my eye to my ear feels like there is a air bag blowing up and putting more and more pressure on everything. At this point the pain is so intense that I get up from sitting on the edge of the bed and go into the library to our upper deck and crack the sliding door and stick my head out and just stand there for sometimes it seems like hours I know its not but it's a relaxing place and usually it's a cool place. Sometimes I go out and sit there although the night noises tend to be annoying. I work nights so most of my CH's are during the day 9:45 am and 2:45 pm seem to be my times during my sleep time. On the weekends I can really throw a wrench in the works by trying to be a normal person. I was so glad to find this site and never knew how little Imitrex it takes to abort. Good luck with yours.

I think one of the biggest obstacles we have in trying to explain these things is man's ability to exaggerate.  All of those aspirin commercials trying to make the headaches they help sound like the worst ever to show how strong they are.  Even when we try not to exaggerate it sounds unbelievable, and then people start to doubt how bad it can really be.

ClusterHK wrote on 11/20/12 at 7:00am:
CH Keith wrote on 11/19/12 at 4:58pm:
I feel like the pain in the eye is like a severe "ice cream headache"

Interestingly, ice cream headache is caused by a constriction of blood vessels in response to the cold... some CH sufferers have reported relief by inducing an ice cream headache to cancel out the cluster headache.

I wouldn't say that I intentionally tried this, but I had a Slurpee while in a cycle and the resulting eye pain mixed with brain freeze was among the most severe pain I have ever felt.  The worst I get are on the side of the head and as rediculous as it sounds, you get accustomed to knowing what to expect, how intense it's going to be, how much longer it typically takes, this was an entirely different excrutiating pain since it was totally new and unexpected.  It created a sense of dread from potential brain freeze inducing foods when I'm in a cycle.

I've described as one time I got jumped and kicked and beat by 10 idiots. Imagine that concussion 3 to 6 times a day for 2 to 3 months.

As soon as I told my doc "Id rather go through labor and birth again without pain meds over and over again then suffer through another night" He said You have cluster headaches!

Mine starts with an inner ear pain and then a light pain above the eye. Thats when I run to get my emergency meds. Im praying as I make my way to the dresser to get my meds that this one doesnt come on so quick but as I open the bottle it peaks. The burning sensation feels like you have been shot in the head. Your eye feels like its being pushed out of its socket. It wells up and water runs out of your nose. I get this pain in my lower sinus at the same time that feels like I sucked up a bunch of water up there. The burning and throbbing moves and pulsates from my left eye down to my neck by my ear. The pain in my ear intensifies. At this point my heart is racing. I wonder if this is normal. Should I call 911? Is this normal for someone to be in this much pain? I throw up and go into shakes. My whole body begins to sweat and I shake and tremor. My husband sitting scared. I want to cry but I dont want to lose control. I rock back and forth counting in a pattern (much like childbirth coping) praying for it to pass. When its done I feel like my head jogged the mile in under 5minutes and IM exhausted. i cry the next morning all day scared of whats going to happen the next night!