An open letter to Jayne's employer

[ Follow Ups ] [ Post Followup ] [ Cluster Headaches Messages ]
NEW cluster headache email group! Click Here to learn more!

Posted by Todd ( on August 08, 2001 at 21:54:24:

In Reply to: My Boss needs help to understand. posted by Jayne on August 08, 2001 at 18:00:35:

My name is Todd. I've suffered from episodic CH for 18 years now, and I've known Jayne for maybe one year. I'm neither a doctor nor any other form of healthcare professional.

The neurological disorder that Jayne and I suffer (along with many other people) is the unfortunate victim of an extremely poor nom de plume. Clusters bear no resemblance to anything you have ever called a "headache". Not tension ha's, stress ha's, hangover ha's or even migraines.

For no known reason, our brains go haywire periodically. The latest research points to some abnormality in our hypothalmi, but exactly what that abnormality is and how it acts is unknown. Although debated ad nauseum, lifestyle factors just don't seem to be involved, as changes like quitting/starting smoking, avoiding/seeking certain food groups, relaxation, meditation and so on have never proven out in controlled research studies.

The bottom line is one knows what causes clusters. There is no known cure. There are medications that have some level of efficacy, both preventative and abortive. Unfortunately, each of us reacts differently to these meds, making the journey to find the right combination a difficult and tedious one, with many stumbles and deadends along the way.

What is known is the effect clusters have on the sufferer. Clusters strike with virtually no warnings....perhaps one to five minutes from the first indication to a full onset.

The pain is very intense....think of a red hot railroad spike being pressed inexorably through your temple until the sharpened tip punctures the back of your eyeball. Now keep it there for the next 45 to 120 minutes. As your body struggles to deal with this intrusion, it's likely your nasal passage on that side will either run uncontrollably or stop up completely. Your eyelid is drooping but since you can't stop tearing, this is pretty much irrelevant. You can't stay still because the pain demands action and, frankly, you're perfectly healthy other than this one problem. So you are most likely now pacing, screaming and either beating your head into the wall or beating something against your head....your fist, a book, whatever you can find.

After about an hour, and with no prior indication, it just stops. It doesn't fade away. It's just gone. You blink a few times, wipe your nose and face with a hanky. You stand still for a moment or two as your consciousness probes your head, much like a military scout unable to believe the enemy is really gone.

And it is. You are now perfectly fine, although your face looks like crap (moreso if you wear makeup which is now completely destroyed) and your entire body is exhausted from dealing with the pain. Emotionally, you're a wreck, because you know no-one understands. Heck, you just "had a headache", right? But physically, you're fine until the next attack.

And there will be another attack...and one after that and after that and.....until the episode ends, most likely in 2 to 3 months. If you happen to be among the 20% or so who are chronic, your episode won't ever end.

We're not asking for much, for most of us have accepted that a cure is remote and even effective treatment is unlikely within our lifetimes.

All we ask is a little bit of compassion and understanding from those we work with and for and from our friends and associates.

Can you find that in your heart?

Thank you and KTSSU,

Follow Ups:

Post a Followup




Optional Link URL:
Link Title:
Optional Image URL:

[ Follow Ups ] [ Post Followup ] [ Cluster Headaches Messages ]



Click Here!