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DAILY HEAD PAIN AFTER TEMPORAL LOBECTOMY

Fri, 11/13/2009 - 16:19

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 left sided head pain lasts ALL WAKING HOURS!!! It is only gone when she is asleep (as far as we know- at least she can sleep). So, 16 hours per day, every day!? And, it STABS for 1-5 minutes at a time intermittently throughout the day! 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

Comments

I am in the hospital right

Submitted by Anonymous on Sun, 2015-08-16 - 19:59
I am in the hospital right now for a monitoring eeg for the same pain. I have been treated like a drug addict just to relieve the pain I have. I only go to the ER when the pain is accompanied by nausea, similar to my postictal headaches.I severely relate to your daughter's story and wondered if you have found any new answers?

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