RIGHT temporal lobe epilepsy (TLE)

[hydrogyrum]

Hi Folks,

This discussion is pertinent to those who have right temporal lobe epilepsy, as according to the academic research I’ve done, it’s quite statistically rare and quite different from left temporal lobe epilepsy. From reading these fora, I know that there are a lot of right TLE people here.

I was being prescribed drugs willy-nilly and wanted to go back to basics. I had been on Keppra (mad Kepprage), Depakote ER (mad mania, ironically enough), and finally Lamictal for 5-6 months. I was also on Prozac 40mg, which I had believed was a “benevolent” drug. About four weeks ago, I stopped all of my AED and psychotropic drugs. I have felt very much better since getting off my cocktail. So, know now that I’m off all AED and psycho drugs (I take a prenatal vitamin and omeprazole 20mg for my pet ulcer).

Also know that I sleep 2-3 hours a night. I’ve done this for over 2 years due a concussion. I’m 49 now and have had hypnic jerks just before falling off into slumber.

Well. Two weeks ago, as I was teeter-tottering between sleep and alertness at night, I had quite a new experience for me. Instead of my left leg jerking (hypnic jerk right before falling asleep), both of my legs jerked up to my torso. This happened on two nights. I was alarmed but dealt with it—my way of dealing with it is to ignore it. I think I drifted off into sleep for 20-30 minutes. The next night, both of my arms jerked in the same manner: jerking up to my torso. I’ve had this situation happen again since then as well.

I like to think of myself as “clean” drug-wise right now. A clean slate. But, I’ve been having some visual illusions/hallucinations in the corner of my eye, which I’m guessing are auras or somesuch. These don’t happen during times of stress, suggesting that they are not psychological in origin.

I’m also currently having problems with cervical spinal stenosis, in that my right pinkie and ring finger are now numb because of (presumably) a pinched nerve in my neck. I also get dizziness sometimes while lying down, and sometimes while standing up, I am really really dizzy. CT scans show an advacement in the stenosis, but I got a doctor’s appointment on Tuesday to start the ball rolling on this front.

I’d just like to hear from right TLE people. Please chime in on your experiences.

 

[Porkette]

Hi hyrdrogym,

I've had right temporal lobe epilepsy for 45 yrs. I started out having migraines when I was just a kid and that lead to the seizures. I have absence, complex partial and simple partial seizures. I was having myoclonic seizures until I started vimpat and that ended those. My Epileptologist did a sleep study on me along with an e.e.g. and e.k.g. and found out I was having seizures in my sleep.
When I first started having seizures I only had absence seizures but I had so many that it caused damage to the frontal lobe and left temporal lobe also. I finally went in and had a right temporal lobectomy back in 1994 and it reduced my seizures from 300 a yr. down to 68 seizures a yr. The only time I had a lot of seizures since the surgery is when my parents split up and that was do to the stress. My neuro did a DNA test on me after trying over 10 different seizure meds and nothing stopping them so I went on the medical marijuana CBD and I can't get over how that has decreased my seizures to the lowest I've had in my life. I've been on it for about a yr.
Keep track of your seizures if you aren't already and your neuro may see a pattern in the seizures as to what time of day or night they happen or what days of the month.
I wish you the best of luck and May God Bless You!

Sue