transfer, cluster headache, MS, et al

I believe I know why I write, but I was surprised at what people read the most according to Google over the last 12 months.

              

Caregivingly Yours Top 10

one-person transfer technique, the hug  (March 2010) … there was nothing explaining simply and briefly how to transfer someone by yourself. Associated You Tube video, wheelchair transferring Multiple Sclerosis caregiver, has been viewed almost 12,000 times. 

cluster headache: brain writhing on a corkscrew (May 2009) … originally posted two years ago this entry and associated cluster headache entries are read so regularly I created their own page on my web site cluster headaches 

a caregiver reflects on the R-Word (March 2009) … written two years ago as a commentary on spending of resources it’s seemingly grown cyber-legs.

hope, liberation, and CCSVI (July 2010) … any and all things CCSVI and MS are worth talking about

monster truck wheelchair shopping cart (August 2009) … adventures with inanimate objects seem to hold their popularity J

respite care: teen autism & special needs (August 2009) … daily search results landing on this entry 18 months later have again spawned its own page on CY web site, living with teen autism 

fondue with Uhthoff's Phenomenon / Multiple Sclerosis (April 2010) … I suspect both the nomenclature and story telling make this entry interesting for those searching for affect of heat on MS

Multiple Sclerosis parenting nature vs nurture (May 2010) … no matter how trying the present, the future always trumps. 

teen autism: diagnosis, a hitchhiker's guide (January 2010) … a simplified thumbnail has continuing appeal

midget albino cannibals vs pilgrims and Indians (November 2007) … written over 4 years ago, obviously the Internet is a strange and wonderful place. What kind of a search leads to this?

Caregivingly Yours began as and remains simply our story of trial and error learned lessons. When ‘sharing with’ meets ‘searching for’ in cyberspace - it can get interesting. 


Caregivingly Yours, Patrick Leer 
web site: caregivinglyyours.com 
videos: www.youtube.com/daddyleer 

20th anniversary MS caregiver / Thanksgiving

“It was twenty years ago today,
Sgt. Pepper taught the band to play
They've been going in and out of style
But they're guaranteed to raise a smile.
So may I introduce to you
The act you've known for all these years …”

25 YEARS AGO
Patti had the briefest episode of slurred speech and numbness in her fingers.

“Probable MS?” Patti felt fine, never reoccurred. Damn the torpedoes full speed ahead.

20 YEARS AGO
November 1989 … National Zoo, Washington DC.

Thanksgiving morning, 1989, Patti awoke in a different world unable to walk, barely able to see and talk. Thanksgiving Day would end with her hospitalized with first Multiple Sclerosis exacerbation.

THREE YEARS LATER, 1992,
We were living with Multiple Sclerosis AS A FAMILY. scooter sleigh ride (1:16)


TEN YEARS LATER, 1999

"If you find there the meaning of what happiness is … Then a new life will begin”

FIFTEEN YEARS LATER, 2004

The care facility era dawns

SEVENTEEN YEARS LATER, 2006,

“it poured sweet and clear It was a very good year”

And, as of last Thanksgiving  ... we’re still “guaranteed to raise a smile”

Oh yeah, along the spouse caregiver path there was one hernia surgery and my back is sore more than I admit. My first episode of Cluster Headaches occurred that original year, alas my Achilles Heel.

Yet considering that I did not even have a clue as to how I would get through that first overwhelming Thanksgiving, there really are infinite reasons to give thanks!

Thanksgiving wishes to us all, every one!

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

cluster headaches: physicians change headaches immortal

Preparing for my recent yearly physical I needed to review my notes and records from my Spring episode of Cluster Headaches.

During an episode (when not actually writhing through a cluster headache) I find myself meticulously recording times, duration, intensity, medications, frankly just about anything looking for patterns or clues.

The older you get the more often you find yourself looking at a new face instead of your previous medical guru. When cluster headaches ARE your medical history for 20 years this is never a good thing.

My first question was “What do you know about cluster headaches?” The answer was so scarily uniformed, the rest of the physical blurred.

To decades ago when I first entered these circles of hell, information was nowhere to be found. Of course a large part of that had to do with misdiagnosis.

Years were wasted with misdiagnosis and treatment for sinus headaches, TMJ, allergies, and too much doubt while I screamed into a pillow in our cellar trying not to wake or worry Patti struggling with MS and our sleeping daughter.

 

I was even told that people in pain sometimes exaggerate their pain. Tolerance varies between people. WTF!!!

Finally a change in insurance carriers necessitated a change in primary care physician and I stumbled into not only a physician who believed my descriptions of pain but was willing to work with me to find a solution. Together we discovered cluster headaches.

Zomig finally appeared in 1997. As far as I am concerned Cluster Headache history should be divided by this date, BZ / AZ.

In retrospect Zomig was slow to take affect but who cared the point was finally something could tame the beast eating my brains.

Lost in 1997, I was interrupted by “Mr. Leer, did you hear me?” … “No, I was having a daymare!”

Why doesn't medical knowledge seem to improve? Why do people suffer needlessly? Next patient …

Time to search for another medical guru!

Related entries:

brain writhing on a corkscrew

aka suicide headaches  

cluster headaches - my Achilles Heel 

cluster headaches continued 

cluster headaches June 2005 

cluster headaches December 2004

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

cluster headache: brain writhing on a corkscrew

IT lurks in the peace of sleep. No, that is not quite right it IS sleep itself, intertwined and indistinguishable.
90 minutes after closing my eyes, it (a Cluster Headache) jabs that corkscrew from hell above my right eye and torturously twists it in and then out. Malevolently crafted, headaches can last from 15 minutes to 2 hours.
"To sleep, perchance to dream- ay, there's the rub."
I admit I fear and resist sleep even while sleep becomes more tempting with sleep deprivation.

My first episode coincided with my first year of juggling Multiple Sclerosis spouse caregiving and raising our daughter. Cause and effect? Coincidence?

Over the past two decades, Cluster Headache episodes occur on average about every 18 months and last from 8 – 12 weeks.

Sleep deprivation eventually dominates any episode. Piles of things around me tell the tale of lost focus. Caregiving is a juggling act, yet one by one the juggled balls fall. My head snaps at the sound of rumble strips as my tires drift across lanes scaring me into adrenalin fueled alertness.

Disabling? Yes, during an actual Cluster Headache. Inconsistent abilities try to move forward through the deepening mud in between. However it WILL end! Or at least, it always has.

Nothing ends without learning. Empathy for pain in others and a window to better understanding life altered by disabling symptoms are lessons learned from a brain writhing on a corkscrew.

Previous related entries:

cluster headaches aka 'suicide headaches'

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

cluster headaches aka suicide headaches

They’re baaack …

It has been a 22 month reprieve for me but as they have for 20 years an episode of Cluster Headaches again rules my daily life.

"Suicide headaches" was the earliest attempt to describe the severity of cluster headaches being able ‘to take normal men and force them to commit suicide’.

Women with cluster headaches describe the pain as worse than giving birth. Imagine giving birth above your eye without anesthetic 2 or 3 times a day, for eight weeks at a time.

Debilitating, disabling, and beyond any definition of pain they become your life for the duration of the episode.

Since my last episode I was surprised to discover the pioneering of videos related to Cluster Headaches on You Tube. This first video is a most creative attempt using the music video format to explain cluster headaches.

http://www.youtube.com/watch?v=dm1Xi1a39dk
This second is REALITY and takes guts to watch. It takes even more guts to leave a camera on and capture what happens as the hell from a cluster headache destroys you.

http://www.youtube.com/watch?v=LAf_QFmTPkw
I writhed as I watched knowing too many years of such attacks. To avoid waking anyone, I have learned to chew on towels and scream into pillows. IF God is in a merciful mood I black out at the peak of pain and awaken later on the floor. Sadly, rarely is God merciful.

Soon sleep deprivation is in a neck to neck race with pain. I live trying for brief cat naps.

Through two decades of episodes while spouse caregiving for Multiple Sclerosis and parenting a child through infant to adult, human empathy from others was inherent. Family sees pain and results in caring unspoken adjustments in their own needs and behaviors.

New to this episode is living with Autism in our home. From what I have observed of Autism there is no awareness of another, nor resulting empathy for anyone else.

The time ahead will certainly test Friedrich Nietzsche’s, “What does not destroy me, makes me stronger.”

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

Caregiving: Cluster Headaches continued

Multiple Sclerosis casts a long shadow. In our story my health as a caregiver always exists in shadow. I suspect that’s true for most caregiving relationships. 

 

If any day of anyone’s life were shown as a painting it would of course be shown from the artist’s perspective. However, for a caregiver any injury, illness, or condition that itself might be labeled disabling is trumped to the background and that’s that.

 

Back on Nov 10th … I shared Caregiving: Cluster Headaches - my Achilles Heel. The beast continues to rip and shred my sanity from my head. I grovel to find and reassemble the pieces, only to repeat this dance of madness hours later.

 

It is always weird while doing research to read of the spouse caregivers and family support of Cluster Headache sufferers. MS prevented Patti from helping, rather she needed my help. Megan was a child and didn’t need another parent who couldn’t help her.

 

It always seems to go back to perspective. … As long as I’ve been a caregiver, I don’t believe I ever given much thought to what it is like to receive care.

 

Anyway … this journal may continue to collect some dust over the weeks ahead. That’s NOT perspective, just some days those last pieces of the sanity puzzle are tough to fit together.

 

This entry’s artwork is borrowed from Cluster Headache sufferer David Jackson. 

Caregiving: Cluster Headaches - my Achilles Heel

        

My pain feels like a hot corkscrew suddenly jabbed into my right eye slowly twisting deeper into my brain and then back out over 20 minutes to an hour. Sleeping, working, or driving it doesn’t matter; the attack is always without warning and debilitating. 

 

Pain levels build to where if there is a merciful god I loose consciousness, mostly there is no god just writhing pain.

 

In the calm that follows I try to recapture the pieces of my sanity.

 

Such is a day in my life with Cluster Headaches. During the worst of episodes I may experience 2-3 attacks in a day. Until this week I lived 14 months of freedom from Cluster Headaches.

 

My Cluster Headaches and Patti’s Multiple Sclerosis have a shared historical timetable. They have been my Achilles Heel as a caregiver. Dr. C Everett Koop, former US Surgeon General claimed “cluster headache patients tended to have more stressful jobs and be self-employed.”

 

National Hospital for Neurology and Neurosurgery in London describes cluster headaches “as one of the most severe pain syndromes suffered by human beings.” “Far worse” than childbirth or migraines in studies of persons who have experienced all.

 

Some medications and some treatments help some sufferers take the edge off the pain of some attacks. Somehow you endure. 

 

“People try to remain awake for as long as possible to forestall the onset of a headache they know is coming.” the Mayo Clinic reports, “In the worst cases, a vicious cycle of head pain and sleep deprivation develops." ... My cycles last several weeks to a couple months, and the most frequent time for attacks is shortly after I surrender to sleep.

   

With an almost conspiratorial dark sense of humor medical studies report a consistent conclusion – “Cluster headaches are, fortunately, rare, affecting less than 1% of the population.”

… It’s sooo reassuring to know you’re special. <grin>

 

Cluster headache inspired artwork is by Bob Pahlow and JD Fletcher.

Cluster Headaches

A phantom jabs the hot corkscrew into my eye and ever so viciously twists. I could be sleeping, or walking, or driving it doesn’t matter. The attack is always without warning and usually debilitating.

 

Over 20 minutes to an hour the blitz builds to pain levels where if there is a god I loose consciousness, mostly there is no god just writhing pain.

 

In the calm that follows the ebb of an attack I clutch together the pieces of my sanity.

 

Such is a day in my life with Cluster Headaches. The next mugging could be in minutes or the next hour or the next day or the next week. During the worst of episodes I’ll get a handful of attacks in a day. Until recently I was blessed with 15 months of freedom from Cluster Headaches. For whatever reason the gates of hell have reopened over the last week.

 

My Cluster Headaches and Patti’s MS have a shared historical timetable. Perhaps the mega-stress related aspects of caregiving may have played some trigger aspect? Medical science offers no answers. Everything except the proverbial kitchen sink has been thrown at the Cluster Headaches.

 

All that really can be done is to pick myself back up following each attack. Some days it feels like from the brink of madness. And in all honesty sometimes I move forward with a touch of shell shocked apprehension in my step.

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(Picture copied from clusterheadaches.com and link to Bob Pahlow's Cluster Headache Picture Page.)

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JOURNAL OVERVIEW  NOTE:

     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              

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Cluster Headaches

Caregivers are not invincible, or at least I am not. The Christmas Season has held my personal kryptonite for 11 years.

Cluster Headaches (clusterheadaches.com) lurk just waiting for the moment in time when the stress hits the magic mark. They will begin and I will enter Hell for between 2 – 4 months.

As a caregiver you often face the march into inevitable consequences. This journal has shared Patti’s health; I should be fair and share the health risks in my caregiving. Mine is Cluster Headaches for 11 years now triggered with the Christmas season.

As mentioned in the linked AOL Health page, Cluster Headaches are sometimes referred to as “suicide headaches” because of the unbearable pain level.

At peak I usually get two to three a night for five nights out of a week. It feels like a corkscrew twisting deeper into my brain from above my right eye for about 30 minutes of steadily ever building pain and then equally slowly out again.  Not sleeping is the only defense. After so many days and nights I of course doze off some where some how only to be tortured awake. Soon if I’m not in pain, I live in fear of its return. If God is merciful I pass out during an attack and awake on the floor or wherever. I can’t think or function. In between I become a zombie going through the motions of caregiving waiting and waiting to be dragged back into Hell.

Cluster Headaches have been my Christmas bonus as a caregiver for 11 years now. With that many annual vacations in Hell, I always have apprehensive enthusiasm for the season. In theory the transition to a 24/7 care facility reduced the stress of caregiving, we’ll see.

Caregiver health is too often ‘invisible’ compared to the person they care for.