To Tracy's Mum

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Posted by Margi ( on May 05, 2000 at 11:34:00:

In Reply to: having a crap day and want to moan.............. posted by Tracy on May 05, 2000 at 09:56:35:

Tracy: Print this out for your Mum

Dear Tracy's Mum,
I am a supporter of someone who goes through what your daughter, Tracy, goes through with her "headaches". My husband Mike has had these "headaches" for 20-some years now, and I've been with him for 15 of those years, so I've seen many, many cluster headache attacks.
Believe me, they are more than just "headaches". The pain of cluster headaches has been noted as being worse than amputation without anaesthetic or drug-free childbirth. The sufferer can NOT help themselves when they are under attack and it is likened to a seizure of sorts, for the "layperson". Think of an epileptic under seizure - they are totally helpless to stop the attack and THEY want to go through it even LESS than you want to see them go through it, trust me.
Cluster headache sufferers are the strongest people on earth. They manage to function, maintain a family life, work full-time, carry on as normal while awaiting their next attack, knowing they will quickly be reducing to whimpering helpless victims of another vicious attack by (what we have come to call clusters) the "Beast". Think what that must do to their their lives, wondering when the next attack is going to hit them. Hoping they won't be in pulic, hoping they won't embarass their families if they surrender and cry in pain, hoping they won't be caught driving and have to pull over to the side of the road in order to avoid an accident, hoping their loved ones won't think them "wimps", wishing their loved ones could try to understand their pain and just let them deal with it the best way they know how.
For a lot of sufferers, the best way they deal with the pain is to try to be alone and concentrate to work through the attack. This took me a long time to learn - to leave Mike alone if he asked me. It's so hard when someone you love is WANT to help, but the biggest help you can be is to ask them BETWEEN ATTACKS what THEY need from you. I'd bet any money Tracy just needs you to be understanding. She needs you to support her and believe her pain is real and not something she can switch on or off. And, unfortunately, there IS no magic pill or drug that will cure these "headaches" for Tracy or for any of us (I say "us" because cluster headaches affect whole families, not just the sufferer). It is an afflicition for which we haven't found a cure yet, but believe me - so many of us are working HARD to find one.
Please feel free to contact me if you need any more information on how to be a supporter for cluster headaches. It's sure not an easy job.
My email is
Margi Storey
Calgary, Alberta, Canada

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