Wednesday, February 27, 2013


I am starting to loose my wits. I generally really keep it together. But I am frustrated in many ways.

For fellow sufferers...." How many times have your heard?"....oh my buddy gets those?
or "Its just a headache, and it can't be that bad"
or "You cant be serious?"

First of all." No he doesn't and yes it is!!!"

I have lost jobs, what I thought were good supportive friends, and get a deer in headlights look when I try to explain to strangers when they ask and I explain its the most painful on the planet.
I have even blogged about it. Advise read my blog or goggle it, wikipedia it....still same reaction

I am sure this scenario and many others have happened to you fellow cluster heads.
Dealing with my attacks, fatigue, stress adds to being short with people.

Is there a different way to tell people...."For frig sakes listen to me, I am trying to tell you I am an expert. Listen to me you buffoon,stop arguing with me and pay attention to what I am trying to tell you." Some days I wanna smack someone in the face for not listening. They may hear me but they are not listening.

I am at my wits end....I try to offer links.Videos....people just don't friggin listen
My family sees what I deal with. Shake their head in disbelief.
Others argue constantly and battle like they remotely know what we have. Like a F*****king Aspirin is gonna fix it.

So I posted this paragraph over on a Cluster Headache forum....and I got a fair amount of responses. This one in particular really captivated me. With her permission I am cutting and pasting her exact response to my topic. And this is VERBATIM her response

I often say that if I had a super power, it would be the ability to touch someone and have them experience my worst pain for 5 minutes. That would settle the argument.

I like the term 'cluster attack', and I usually refer to them that way. Takes the lame word 'headache' out of the equation.

I use a few methods to describe them to the uneducated.

One, I will draw a short line on a piece of paper, say an inch long. I'll explain that this is a 1-10 scale for headaches, and the worst headache you ever had is a 10 on this scale. My worst headache lasted 7 months, to just put the scale in perspective.

Next to this I draw a second line, about twice as long and starting at about the middle of the first line (so where 5 is on the first scale). This is my migraine scale, and again it goes from 1 to 10, but is much longer because the 10 of a migraine is MUCH MUCH worse than a 10 of the headache.

Many people can relate to one or both of these scales, and I also explain that my bad migraines last 5-7 days.

I then draw a third line. This line starts at about the 8 on the migraine scale, and goes to the edge of the paper, and longer if I can. This line is 10 times, 20 times longer than the migraine line. This is my cluster 1-10 scale.

For most people, the light bulb starts to come on at this point. I point them to the Wiki page that says clusters are the worst pain known to man.

I tell them that a cluster sufferer friend of mine once dislocated his knee, and didn't know it for 3 days because the pain was so minor compared to what a cluster is. I tell them that giving birth ranks about a 3 on the cluster scale, that having kidney stones is maybe a 5.

Then I tell them my worst cluster attack ranks about a 14 or 15 on my cluster scale. That it felt like someone had shoved an ice cold steel bar into my eye socket, forcing my eye ball out of the way. And it felt like they were using this bar to pry the top of my skull off, and I could feel the bones cracking across my forehead. The pressure would increase and the crack would form, then the pressure would ease and the crack in the skull would heal, then the pressure would be applied again. Over and over this went for 30 minutes. Then it just stopped. I explain that it took me over 2 hours to gather myself up after this attack.

Trying to get someone to grasp what a cluster attack is like, is like trying to explain the colour red to someone who was born 100% blind and only perceives black. As the worst pain known to man, if you haven't experienced it, you have no hope of understanding it.

So one has to break it down into descriptions they can understand, and then say it is MUCH worse than that, but you get the idea.

If they still don't understand, hit them in the eye with a baseball bat. Then say it feels sort of like that, but 1000 times worse.
Every day.
2-3 times a day.
And at night.
For the rest of my life.

And if they STILL don't get it, stop being their friend. They aren't the sort of friend you need. IMHO

MG "

I posted this on my blog because some may think my explanation of pain or the disease might be biased. This person above "MG" I have never met,and only asked her permission to use her comment. She obligingly did.

Feel free to use these signs. A few people I know should read them and understand them.


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