Posted 4/18/2010 10:09 AM (GMT -6)
My name is Alex and I've have a condition that I've been suffering for 7 years with. I'm an otherwise healthy 34 year old man and I don't have any other problems, and no heredity problems of any sorts.
about 8 years ago I spent excessive amounts of time in front of the computer, often that's all I did. I'd suffer from headaches pretty much all the time from eye strain or too much concentration. After waking up in the morning, I'd turn on the computer and turn it off just before bed.
One day I when to bed with the usual chronic pressure in the head, especially behind my left ear from all the staring at the screen, but this time I felt there was something about to happen. It's difficult to explain, but it felt like a seizure coming on, a certain feeling of uncertainty, nervousness or dizziness, malaise. I now just call it an aura.
It somewhat came in waves and just before I fell asleep a MASSIVE pain erupted from behind my left eye, my neck, jaw, face, and left arm simultaneously. My head tilts towards the right hand side and I squint my left eye as the left side of my face and arm cramps. Erratic arm moments.
When it happens I can not lie down and have to jump up. It feels as if I am having a stroke and can barely make it to the door. I scream in pain as my entire left side shakes, cramps and basically just explodes. It felt as if someone had takes a hook and hooked an artery behind my left eye and pulled it out, jerking the nerve right down to my left fingers with it. It's difficult to call it "pain", because while it definitely hurts, it's just that it's too extreme to describe. The pain disappears after 30 seconds.
In the first year it happened once a year. Then the next year 3-4 times. The intervals got smaller and currently I'm almost at two a week, 7 years later. The intervals were often so precise, that I could plan my day around them, e.g. "Next Tuesday I'll get one between 9pm and 10pm"!
I get these auras all the time now and is making me really drawn back. Very difficult to concentrate at work and my private life is rotting away because of the anxiety and panic associated with not knowing what these attacks are and how to cure them.
Right now I just put on a mask at work, just to make it home again to sit around and worry about my seizures. I hardly go out anymore, something I should do. Most often they don't lead to seizures, but at least a few times a week they do
I've been to many doctors, blood checks, neurological exams, head MRI w. contrast agents, angiologists, chiropracters, dentists, had extended EEGs done, ECGs, had my eyes checked etc. Everything is fine and I'm "chronically healthy". *sigh*.
Last year I went to hospital at an epilepsy clinic where they ruled out epilepsy, even though it does look like epilepsy. I didn't react to any AED (took Keppra for one month), I took 10mg diazepam and still had them, I took lyrica, still had them. I took indomethacin, still had them. They could be psychogenic seizures, but they're just not sure...nothing stops these attacks :(
In the meantime the attacks continue to worsen. I'm at wits' end. I fear there will never be a solution, currently I'm just hoping for a cause.
If anyone has heard of anything similar or has any idea what it could be or how anything can help, I'd love to hear from you. Thank you so much for getting this far :)
All the best,