This site is devoted completely and exclusively to those that suffer from,
and to the supporters of those who suffer from Cluster
There are a few other sites out there dealing with Cluster Headaches, but no
real place to "interact" with other Cluster sufferers. There are a few
message boards where you can read posts dealing with Cluster Headaches, but sorting
through all the migraine, tension, and other headache posts to find the few about Clusters
is enough to bring on a headache!
Never again will you have to search, hour upon hour, for information on Cluster
Headaches! You now have a place to "hang out" that you can call our very
own. You now have a place to "vent" when you wake up at 3 a.m. with a
headache, the oxygen tank is empty, and you're out of Imitrex!
Finally...a place where you can talk to someone about how horrible your headaches are
and know that they really do understand your pain.
Welcome to your new home on the internet!
Want to know what it's like to live with cluster headaches?
"...I've seen him walk down the hallway (holding onto the
wall for dear life) with his head cocked to one side and walking like a 100-year old man.
I've seen him cry, pull out his hair, and beg me to take him to the emergency room. On one
occasion, I was driving the hospital - in the middle of the night - with 2 daughters in
the back seat and he's practically pushing the dash of the car through the windshield
because I'm not driving fast enough - and he's crying all the way. I know that he will do
ANYTHING - ANYTHING to get rid of this pain. I can't believe that most doctors don't
realize this - maybe they'd like to spend a couple of nights at my house and see what he
goes through !!!
When he's having the series of headaches he won't sleep because he knows that he will wake
with another one - what a terrible, scary feeling! Thank God I don't suffer from these
headaches - but I feel so helpless when it comes to comforting him. After a while it
starts taking it's toll on me and our children. I dred for the night to come - since
that's when most of his headaches recur and we start all over again!"
- Loretta (wife of a sufferer)
"I just gotten over an attack. I've been going 5
weeks now non-stop. 4-6 attacks per day. No sleep. No relief. I'm exhausted. I keep
telling myself this hell is going to end soon, but I'm beginning to think that it's not. I
can't think. I can't eat. I can't leave my house. When I'm not in pain, I'm in dread of it
coming back. The attacks are increasing in intensity everyday and I sometimes think that I
will go mad. I try everything to ease them a little and nothing seems to be working. I
really don't know how much more I can take.
I keep telling myself that I am strong enough to deal with it. I've
been doing it for a long time now. But then the next one hits, and I become a wimpering
little baby with no strength what-so-ever. My only saving grace is being able to write
this down and know that you will understand like no one else can. I'll close my eyes now
and hope that maybe I will sleep a little before the next one hits. Thanks for being
"It started about 2am... I was awakened from my
sleep with this burning senstation in my ear and back of my neck, I tried to shift
positions and return to my peaceful sleep, but it wasn't happening. Something in my mind
told me immediately that I was dealing with the same crap I did a couple years ago, and
even though I tried to convince myself that it wasn't the same, I KNEW it was.
My right eye felt like I took a couple punches, and my right nostril was starting to leak.
I got out of bed, and went downstairs, all the while, this pressure in the right side of
my brain kept building and building. My right eyelid was beginning to swell shut. I was
squinting and it was tearing. I kept looking at the tears coming out of my eyes, convinced
there was blood pouring out. I dropped to the floor and pressed my hands so hard against
my temples that I thought I was gonna crush my skull, it wasn't helping. I got up and
well, I went insane. It's the only thing I think I can describe it.... stark raving
I was pacing from room to room, crying, flinging myself to the floor, getting back up
again... holding my head, squeezing my temples, I looked up to the MAN above and literally
begged him, that I would do anything, ANYTHING, just make this madness stop. He wasn't in
that morning, and I suffered. I wanted to die, just simply that, I wanted death to take me
as I just could not deal with this excruciating, horrible, horrible pain. I was chewing
Tylenol like tic tacs.. screw swallowing, I was chewing them into a paste... 10 minutes
passed, then 20, then 30... I swear my brain was cooked. I mean, the entire right side was
numb from my forehead to behind my right ear. I was rocking myself in this chair wimpering
like a lost little boy, and then, as suddenly as it started... it was gone.
I was SO freakin exhausted, I couldn't find the strength to climb back up the stairs so I
slept in the chair for 2 whole hours when the madness started all over again. I could not
belive this shitty ordeal was starting once again! Who the hell did I piss off to bring
this upon myself? I would not wish this on MY WORST ENEMY! By 6am, I was wasted. I mean, I
had nothing left in the tank, I just didn't give a rats ass anymore. I just couldn't
believe it was finally over, or was it?
I was fine the entire day, a little worse for wear I will admit, but no headache... until
about 2am the next morning, and the morning after that when it all started over again.
Here I sit at 1am in the morning on the fourth night. I am terrified to go to sleep. It's
like a freakin' Freddy Kruger movie where everyone is fighting to stay awake, cuz they
know what's comin' a knockin' once you fall asleep. Whomever said "You have nothing
to fear, but fear itself" never had these kind of headaches. I don't fear much, but I
tell you... I sure the hell fear what's gonna happen in the next few hours."
"Its somewhere between 11:00 P.M. and 3:00
A.M., and I wake terrified, hopeful that Im dreaming, and knowing that Im not.
I move quickly out of bed while my lovely wife of fifteen years, the only one who truly
tries to understand, watches helpless; as there is nothing that she can do, she hurts too.
I am careful not to wake the children as I make my way down the stairs. If they were to
witness my nightly cluster ritual, they would never see me the same way again. Their
father, fearless protector, diligent provider, crawling about in tears, beating his head
on the hard wood floor.
The pain is so intense I want to scream, but I never do. I go down three flights of stairs
where I can't be heard, and drop to my knees. I place my hands on the back of my neck, and
lock my fingers together. I bind my head between my arms and squeeze as hard as I can in
an attempt to crush my scull. I begin to roll around, banging my head on the floor,
silently groaning. I stand up and begin to pace, pressing my left eye with full force of
my palm. I often wonder how it is that my eye isn't damaged. I search for the telephone
that has always been my weapon of choice for creating a diversion, and I beat my left
temple with the hand piece. I create a rhythm as I strike my scull, cursing the demon with
each blow. I reach a point of distraction from the cluster, and then I start the whole
process over; roll and squeeze, crawl and bang, find the telephone.
Eventually, the cluster, whatever it is, drains from me. I can feel it passing through my
temple, and behind my ear where it seems to run out of my skull like water passing down a
pipe. Tonight it took two hours, yesterday was thirty minutes. Tomorrow only God
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