Supporter's Stories
We’ve all been here, haven’t we?
The day had finally arrived. My in-laws 50th wedding anniversary was upon us.
All of our planning was finally coming to fruition. The caterers were in
place, the orchestra paid in advance, the guests would be arriving soon, the
hall looked perfect and I rushed home to change clothes. My husband and I were
urging our two teenagers into their best clothes and into the car, for fear we
would be late, when I saw him surreptitiously massage the back of his neck.
“You OK, hun? I asked.
“Yeah, it’s nothing. Just a twinge.”
That should have been my cue to arm myself, but being so caught up in the
event, and becoming frantic that my children were going to make us late, I
rushed to get everyone out the door. We arrived at the hall on time, before
the guests and quickly got swallowed up in the last minute details.
It was during some of the speeches, the “Toast to the Bride”, actually,
that I felt my husband stiffen beside me suddenly. Then the fidgeting. The
knee was bouncing. I felt cold terror in my heart because I knew what was
about to happen, all too well. “Nooooooo……” I thought to myself,
“Not tonight. Please leave him alone.” But my prayers went unheard.
I sat helplessly as I caught the all-familiar glance from him that was a
tornado of emotion. The “I’m sorry, honey.” The “I HATE this!” The
“God, take me now, before I go to hell again!”. All of it. Rolled into one
look. I knew he wouldn’t be able to sit there much longer. He was going to
get hit and there wasn’t a damn thing we could do about it. Cluster
headaches, the neurologist had told us. No cure. And here we were, trapped at
a function, and our arsenal was empty.
I mentally smacked myself in the forehead, thinking that I should have paid
attention to that neck rubbing earlier. I should have brought an ice bag and
stuck it in the bar fridge. I should have grabbed his Imitrex and just put it
in my purse, without letting him see me do it, so as not to “jinx” him. I
should have arranged for there to be oxygen at the hall, just in case. So many
‘should haves’, and nowhere to run.
We always take an aisle seat at any function we attend. Force of habit, I
guess. Caught and trapped too many times. He slipped quietly from the row and
headed toward the back door of the hall. At least if he could get outside into
the cool night air, it would help him a little. If nothing else, he would be
able to concentrate on the pain instead of worrying that people were looking
at him as he went through the attack.
“Where’s dad going, Mom?” My oldest son asked. Then he paled. “Oh no,
he’s getting another headache isn’t he?”
Suddenly my big strong lad became a scared little boy again. He has seen so
much pain in his young life. No child should ever have to see their parents go
through this torture. I often wonder if my feeling of total helplessness even
comes close to what a child feels, seeing their ultimate protector suddenly
becoming totally at the mercy of something unseen. His younger sister just
looked at me with big, tear-filled eyes.
I caught my mother-in-law’s gaze from the head table. She must have felt the
panic rising in me. A silent question passed between us and was immediately
answered. With a nod of her head, I knew I was officially excused to go help
her son. But I did catch her rolling her eyes. THAT didn’t go unnoticed. My
father-in-law, however, bowed his head and I could see the pain flash in his
eyes. He knew.
I quietly left the hall, with silent instructions to my children to wait
quietly. Like they always have when this happens. No questions asked. No
arguments. I stood at the door of the hall and caught sight of him. Standing out in the
parking lot by our car. I could see the breath being exhaled and I shivered at
the thought of it. But he had taken off his suit jacket and loosened his tie.
The cool air would help him. I saw him looking at the ground, rubbing the back
of his neck. Back and forth he paced. Like a caged lion. The moonlight caught
a bead of sweat on his forehead. He looked up and saw me standing there. Our
eyes held for a moment, but not a word was spoken. He just shook his head and
I knew he needed to do battle alone.
Feeling totally helpless, I quietly closed the door and stepped back inside.
My sister-in-law (HIS sister) was standing there.
“What’s the matter?”
“He’s having a headache.”
“Oh brother. Tell him to take a goddamned aspirin and have a belt of scotch,
for God’s sake!! He’s RUINING the evening – everyone’s distracted now
because he left!!”
I looked at this person standing before me and wondered how she could be so
callous about her brother. I didn’t answer her. I just went back to the
kids. They understood. They had to.
“Is he going to be OK, Mummy?” Mummy. My daughter hadn’t called me that
for years. We all become so vulnerable when the Beast enters our lives.
“Yes, sweetie, he’ll be fine. He’ll be back in a little while. Are you
guys OK?”
“Yes, Mum, we’re fine.” But they’re not fine. WE’RE not fine.
Kind of ironic, I thought to myself. There’s a party going on here. But in
the parking lot, there’s a vicious battle raging. Completely unnoticed and
misunderstood. They will never know what it is to live with this.
But we do.
Every time I sit down and read these stories I just cry. I feel so much for
fellow cluster headache sufferers. This is when it began for me: In 8th grade
I first started getting the migraines. It was very hard for me, because no one
believed me. I felt helpless all the time (I was also suffering a severe case
of depression).
After two years of living with this pain, and not knowing what it was, I finally got my father and stepmom to take me to the hospital. Later on that day the doctor called back and had us come in. He had told us it was a brain tumor, and cluster headaches. A couple of days later, the doctor had called us back, and told me I just had an enlarged cell in my head (about the size of a golf ball), plus the C.H.s. That was when I was 16 years old. I was supposed to go back for another M.R.I. when I was 17, but there was family problems, so no go.
I am now 22 years old. I have not been back to the doctor.
I don't know what's going on with my head, but I do have recurring migraines
often. Just about everyday have a pain in my neck. Its always sore. I'm
dreading when another one hits. There's so many things I could say on here,
but it would just be another sad story. I want C.H. sufferers and their
families to know that there is someone out there who cares. Someone who knows
the pain they go through. In my 22 years I've been through just about
everything I could go through. But I'm still standing...
Nicole
Russellville, AR USA - Oh my god I read the first story about the in-laws 50th wedding anniversary my god I have been there so many time I start crying like baby at work people came to my office asking me if I was ok. I let a few co-workers read these stories because they all know of my CH with a tank of oxygen on the floor in my office. WOW your story really touched my heart. I know how you feel its not fair and I'm sorry. Kevin
San Marcos, TX USA - "Daddy. Daddy!" My two-year-old
said, trying to get my attention. "Mommy okay? She have hegache
again?" I nodded. "Yes pumpkin, Mommy has a headache again." We
haven't found the right combination of medications to keep the beast away, and
about the only thing that worked to bring the pain down to a manageable level
would be a trip to the local ER where they could give her some oxygen, an ice
pack, and a shot of Nubaine. The oxygen and ice pack are just a routine--we
have them at home. The Nubaine seems to be the drug of choice for now. My son,
familiar with this ritual, said, "We go car ride now? Go hoppital? Me
come too?" He likes the ER: the nurses all adore him and give him
stickers whenever he makes the trip with us. Over the last three years, my
wife had tried just about everything. There hasn't been one single thing that
has gotten rid of the headaches. One drug may help for a bit, then it will
fail to do anything. Another drug may make things worse. Luck of the draw.
Knowing that my wife is helpless is very difficult to cope with. I have had my
doubts. After all of the drugs and narcotics, I was getting worried. All the
doctors said to be careful, and many diagnosed her problem as being rebound
headaches. I don't rule that out for a very small portion, and even may have
been acting as a trigger for further clusters. "Analgesic Overuse"
they called it. "Clueless Neurologist" is what I called it. Three of
them. Can three neurologists be wrong? They are professionals right? They are
supposed to know what the hell is going on, and fix it. These three so-call
professionals came up with three different diagnoses, and all were eventually
proven wrong. A local doctor in the ER was the first to actually put down
"cluster headaches" on paper. Unfortunately, the pain was getting
worse, and the help was no where in sight. My wife was rapidly becoming
depressed and tending towards suicide. Luckily, she came across OUCH and
CH.com and has slowly started making the long road back out of hell. She has
met many who suffer as she does and whom she can relate with in ways I can
not. I do not know her pain, I do not know the pain any of you suffer. I know
of it, but I can not KNOW it. All I can know, is that for tonight, a shot of
Nubaine will at least bring it down to a 3-4, where she can try to sleep.
Anthem
USA - I feel like no one else has experienced the unspoken
look from your husband when a cluster is coming on, and you kick into gear.
Get an ice pack, check the time, get the ergotamine, help put on the oxygen
mask, and all other attempts to make this horrible event easier on him. If
there are guests give the look to your child, who knows all to well to turn up
the t.v. or go to a room farther away because you don't want others to hear
what may just be moans, or could possibly be screams. People wouldn't
understand why you can't do something for him! After witnessing over thousands
of these torture rituals, I don't understand why I can't do anything for
him!!! 5 years of, the small ones in the beginning, to the climaxing 2 or 3
hour screamers as he calls them. I know the feeling of why didn't I get that
prescription refilled or I should have gotten a second oxygen tank for the
weekend! I would never wish this situation on any family. always looking for
another idea or remedy. He has tried the whole list of recommended drugs,
acupuncture, chiropractic, hormones, you name it. Over 5 years on, with only a
few months of remission. We would like to hear a good success story!
Wilson
Tulsa, Ok USA - Sometimes I lie awake at night, and I ask,
'Where have I gone wrong?' Then a voice says to me, 'This is going to take
more than one night.' -Charlie Brown
