Doc's Cluster Headache Journal

Saturday, January 09, 2010

Maintaining A Low Roar

I know I haven't been posting much...

A 13 month old son with food sensitivities who wakes up 2-6 times a night and sometimes requires hours of soothing to get him back to sleep will cut into your "writing time". But thats not the only reason... I have been in a lull, bad cluster attack wise. I feel guilty in a way because I know so many of you are out there in such great pain and I don't think I feel worthy to speak about it at during a time that I am not feeling it as intensely.

I am still waking almost every day to a 2-3 migraine style headache and at least I forget... I AM in a little cycle right now. I am getting 1-3 level (my scale) "long and low" cluster pain at my typical times of day for the last two weeks but I am so used to mild cluster pain that I sometimes have to stop and think about it, almost "hunt for it" before realizing oh yeah! There it is!

Kinda sad, being so familiar with pain that it becomes like background noise that you tune out. Its still slowing you, making you less effective, you just don't have the time to acknowledge it anymore.

Now the burning question... Am I not getting bad attacks because I am on Topamax? Yes? Maybe? Partly?
a. I think Topamax is having a positive effect (for me).
b. I have had long stretches of time were I didn't get bad attacks before.
c. I get less headaches when I sleep less... and I have been up a LOT with the baby
d. I honestly think my body may just be "walking it off" due to my son

Topamax has pretty much proven to me that it is having some effect on my attacks. It is the best preventative I have tried so far. I understand it does not work for everyone and that just points out the elusive nature of controlling cluster attacks. For all I know my bad attacks will return with a vengeance in spite of Topamax and I would not be surprised in the least. In fact I am waiting for that shoe to drop.

Hell, It doesn't Have to be the Topamax that is fully responsible. Sometimes I just take a long stretch of time off from bad cycles... It has happened a couple of times before and each time I was hopeful that my nightmare was ending. I was heartbreaking to find I was so wrong.

Its now very clear that for me sleep is a "trigger". Yup! The more I sleep the more likely I am to get bad attacks and even migraines. Well, my son has been a real challenge over the last 13 months he needs around the clock attention and his headache ridden insomniac father can usually stay awake to give it to him. This could be 80% of the answer right here to be honest. When we get help watching him and I get the chance to catch up on sleep... I feel like crap after.

I am a firm believer that the body can rise to a challenge for a period of time and that I may be calling on resources that are keeping me healthier because I am caring for a baby. Now that may sound a bit odd coming from me but I think our own bodies are the best pharmaceutical factories on the planet. I don't think is too far fetched to think that I have triggered "fatherhood" changes in my body and that I am reacting in a positive way to providing care for a new person. Its a nice thought anyway

So there it is.

Still lots of headaches over the months, just not the ones that leave you rocking in a corner beating yourself at the base of the skull with the first weighty object you could find.

My wife told me something the other day that made my blood run cold. Our son has been waking up at night more often that usual recently and screaming loudly when he does. She was having a hard time getting him back to sleep and she said he started banging his head rhythmically against he arm and then started hitting himself in the head with his hand in the same way. We both just just kind of stood there for a moment knowing that if he had headaches it would explain so much about why he has had so much difficulty. Then we both decided it was too horrible to consider and I broke the silence by saying "head banging in children is pretty common".

When I was alone I spent a few minutes sobbing at the idea that I may have passed any of my insane health issues on to my wonderful son.


  • In all my reading on CHs, that end part is the most horrible thing I have read. God bless you and your son!

    By Anonymous Mark K., at 2/01/2012 8:31 PM  

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