Sunday, February 3, 2013

Children and Cluster Headaches

I don't even want to fathom a child with cluster headaches. But sadly some survive them. And if there is one thing that I loathe is to see a child suffer. God be with them.

This blog today is about our children and cluster headaches. While I can not write about myself being a child having cluster headaches although I am a kid at heart. I am writing today about our kids who watch us with cluster headaches.

My son was 7 when I got them. He watched in horror when I didn't even know what was happening to me. After a tooth being pulled and within a year I was diagnosed and confirmed by 3 neurologists.

So how do you try to explain to your kid what Cluster Headaches is when you don't even now yourself. The doctor who diagnosed me....verbatim...."son, you have cluster headaches, my nest patient is here" and walked out the door.

I had no idea what CH was until a month later when I googled it. And to my horror found out what the doctor neglected to tell me. Boy id love to talk to him today.

So here I am with CH, not having a clue really what it was, how to deal with it and having a little boy watch me.

As good as m witness, I screamed on the floor thinking am I going to die? and my son crying running to me daddy going to die. Exactly what he said."daddy don't die".
If anyone has CH they know that you have zero ability to do, think, talk,deal,speak while having a kip 10. There is no possible way I would live if the house was on fire as you can not think.

Memory serves me right. As I educated myself on the disease I sat my son down and explain they are bad headaches or attacks more commonly spoken of. That I was not going to die. I did not tell him then that people commit suicide over them. I did not tell him there is no cure and I would die with them. I told him what he needed to know. Even after telling him it took a few years of him not crying along side me. And in time he came on his own, would walk up and put his hand on my head or back. I can not tell you how much the tears would roll down my face even now as I speak of it because for once it was pure unconditional love. For a child to watch his father i utter horror scream and just touch my head with pure love and say there there daddy you be OK....
I will never forget that. To this day he does the same thing. He is now a teenager. Runs to get meds, and bows his head down in what looks like shame that I suffer. He is not ashamed but sad that this happens to me every single day of my life for well over 7+ years . I am sure he is frustrated that I had all these surgeries and had no relief just yet.

I can not even fathom what my son must have thought as I was wheeled away on the gurney 4x for brain surgery. He is a strong and very brave young man. He holds back the tears to this very day and trades them for hugs and re assurance things will be better.

This boy has been mauled by a dog, and then bit again by another 110+lbs dog(recently). He watched his grandfather pass away, women maliciously hurt me in my life and hurt him without reason. His cousin was murdered, and deal with his own health issues. Only 1/10th of things he has endured and he still smiles and is the life of the party with is impressions. I could not be any more prouder of my son. I am so fortunate to be able to share the same love and passion in a hobby that has given us so many personal achievements. Whether we are in the garage on a project together building something or meeting famous car guys like Jay Leno,George Barris,  Tim Allen, Chip Foose, Gene Winfield only to name a few. We share a bond that no one or nothing can separate us.

I have Cluster Headaches yes but the whole family has it too. I can not count how many days my son has gone to school with one eye pen from being awakened to my screaming. What that kid must have felt all these years. Half his life he has dealt with my disease. I commend him and any other child at any age deal with with a parent or brother or sister with Cluster Headaches. Because in my heart you are far stronger than me. Far more brave to watch us day in and day out. When my closest of friends cant even bear to watch but a little boy can and offer love and not walk away says something about how resilient kids are.
My son has watched me through divorce. The ups and downs in life from great things to negative things. He has grown far wiser than any adult I know. We need to love our kids harder, show them how much we appreciate them, respect them. I still to this very day learn from him. He even tells me not to stress out over things as it will cause an attack.

For 12 years I have had joint custody, 50/50. Some years I had him more but never less. Id like to think I maintain a somewhat civil/cordial relationship with his mom and try my best to be the best ex husband to her I can be. I do it for him. There is nothing I haven't done or wouldn't do for him. I have taken him everywhere. From California, to Nevada, Florida, Carolina's,Virginia's,Tennessee,Ohio,Michigan, Dominican Republic and all over southwestern Ontario and will continue to take him everywhere I go. He is like AMEX, I never leave home without him. So I may have had 50% custody for 12 years but I am a dad 100% of the time.

We can learn alot from our kids. If your new to CH. And just learning how to live sick. Know that aside from your spouse if you have one there is little eyes and ears learning how to live sick along side of you. I give so much credit to children.  My wife says to me every single day that I am the strongest person she has ever known.  Naaa, my son is. Hands down.As you can see from the photos. He is always there, good times and bad.

Go hug your child today and tell them how much you love them. I do it everyday. I love you son.



  1. There are cases where there is no remission whatsoever and it is only the intensity of the pain that decreases. To fully live out life with cluster headaches is a definite challenge to the patients. cluster headache

  2. I am such a case. The intensity and/or duration are the only thing that change. My CH is in "tick" form. By that I mean, they last (the longest) up to 15 mins. However, I can have upwards of a 100+ attacks a day.
    Our families, I sometimes think, have it worse than we do. How bad can it be for them to watch us day after day, year after year, suffer? I know our pain is BAD. But, the horror of watching us I can't even imagine. I have suffered for 10+ years. Any day that I do get without so many is a good day. Live every minute to its fullest and always tell the ones closest to us: how very important they are!
    Wishing everyone: Pain free days ~ and a Cure!

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