Hi,

My daughter had a left temporal lobectomy, following placement and removal of subdural grids and depth electrodes, January 27th 2009. We went about 5 months with NO SEIZURES- YAY! Unfortunately, at right about 6 months, she began having very severe head pain on her left side- where it's all bumpy from the surgery. At the same time she began having simple partial seizures again. She now has regular/ approx 3 per week auras/simple partial seizures, with complex partial occurring less often.  This is definitely better that before surgery(10 or more a day)! Her history is such that she unfortunately has secondarily generalized seizures that turn into status epilepticus. So far there has been no generalized seizures, and I hope we don't go there again.

The head pain lasts ALL WAKING HOURS!!! It is only gone when she is asleep. So, 16 hours per day, every day!? And, it STABS for 1-5 minutes at a time! We've tried Indomethicin, Prednasone, Melatonin, Propanapol, all of which have not helped. (and of course the tylenol, ibuprofin, alleve, etc...) We are trying something new today. The only thing that helps is pain meds to help get her to sleep at night. This pain is SEVERE and debillitating. 

Is there anyone else who has had this type of head pain? We had an MRI on a 1.5 Tesla machine, which did not show anything. We have added Lyrica to our Keppra and Lamictal, and are still hoping to figure this out.

Thank you for any help,

Vicki