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An open petition for the people working in the healthcare industry involving patients with Horton’s syndrome

We hope that the term “headache” would not be used when dealing with our disorder but rather some other expression as part of the name of our condition. Using familiar "cluster headache" may build up to not understanding condition and expression like "it's just a headache". In our patient files Horton’s syndrome or Horton's cephalalgia can be used.

Horton’s syndrome also has a nasty nickname; “suicide headache”. This rough sounding name is an attempt to express the severity of our condition. This is not a headache or just a head pain. These are seizures originating from the brain that leave patient alone to overcome the physical and mental traumas from these seizures (attacks).

English term “an attack” is very fitting, and since we feel the pain of these attacks in our head region, some use the term “head attacks”. But only when you start to think these seizures appearing like physical attacks; someone repeatedly attacking you when no one can see - you start to realize the amount of fear many patient constantly live with. The “attacker” in Horton’s syndrome is an invisible shape; it breaks the patient because it feels like it’s stronger than you, it comes back again and again, it arrives by it’s own schedule and nobody even knows what is happening to you. Patients can actually be afraid to go to sleep, because sleeping is an usual trigger for an attack.

At some point when this condition has evolved to being severe enough, many of us are ready to do absolute anything to stop these attacks from happening.

In healtcare industry the better understanding of Horton’s syndrome and patients surviving with it will improve the management of this condition and also decrease the burden from people working in healthcare - it is an advantage for both parties.

This text can be freely shared anywhere as long as it’s shared in full.

Tony Taipale
Patient with Horton’s syndrome

#hortoninsyndrooma #CHAD2019

It's not the pain of this attack,  regardless how brutal it becomes. 

For me it's the fear of the next attack,  because I know it's coming and there's nothing I can do to stop it.  Then the next one,  and the next one,  and the next one...


Stalked

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 really believe
That it’s gone forever,  in future it’ll never
Come back to attack,  where-ever and when.
I’m beaten,  defeated,  the beast has feasted,
Again,  and again,  and again and again.

Tony...thanks for promoting the name change idea. I have always felt that categorizing CH as headache only is quite inadequate.

Brian...YOU  ARE  AWESOME! Truly great work.

Patti

AussieBrian wrote on Mar 21^st, 2019 at 7:59am:

For me it's the fear of the next attack,  because I know it's coming and there's nothing I can do to stop it.  Then the next one,  and the next one,  and the next one...

And never knowing when a cycle might arrive, totally out of the blue.