It’s 1am. The house is silent, and I find myself woken up with nerve pain in my head – again.

There’s no reason for the pain, I haven’t hurt myself today or had an accident, there’s nothing to visibly see. Only invisible waves of sharp electricity radiating along my scalp to my face that I feel with a heavy intensity.

I’ve got better at handling flare ups. For example I no longer go to A&E to seek relief, because the pain is neurological, it’s being created by my brain. And the hospital don’t have a single drug that can relieve it. Instead I ride it out, because I have no other choice.

I’ve made the mistake of adjusting my epilepsy meds today because they don’t help with my fatigue, they slow me down and I get drowsy and struggle to stay awake in the evening. Which in turn affects my personal relationships

It could be the tweak and lowering of the meds that has ramped up the pain. Or it could be a random assault. Just my brain receiving faulty signals from a damaged nervous system.

Distraction helps, writing is good, if only with one eye open, it removes me from the hot stabs and burning that could all stop in 5 minutes or drag on for hours. My hope is that it doesn’t get any worse. Because with more intense pain I get frightening thinking on ways to stop it.

Faith goes a long way

Tonight the monster is awake and I am at it’s mercy. It doesn’t care that I’m tired or have triplets to deal with. It couldn’t care less than that il be drained tomorrow. It’s simply vicious.

I have tried every way to manage it, like slowing down so as to not send my nervous system into wind up. No matter what I do I have to share my body with something so bizarre it cannot be seen or made real sense of. Doctors don’t understand it, only the few pain specialists that treat cps get the struggle.

It scares me at times, not so much the direct pain, but where it takes me emotionally when I am drained of all resources to fight it. Some days it just rears up and grabs me, or pulls me from my sleep. Like tonight.

And all I can do is see that it’s there, try not to resent what is happening and wait for it to dial back down. To enjoy the better days and buckle up for the worst and stay strong for my family.


  1. I also have pain on the right side of my head. Trigeminal nerve. I get pain and numbness down the side of my face. My eye is really affected. I have double vision in that eye. I can relate to the fatigue. My daughter and brother were diagnosed with MS. But, doctors have not been able to diagnose me with anything. It is frustrating. So I do what I can to get through it. I’m sorry for your struggle.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s