Depth electrodes to monitor of seizures deep in the brain

Thanks for starting this new discussion, @lsittll. This is very interesting. Is your epilepsy better managed now with the right kind of meds? I'm also wondering how long ago was this procedure was done? I'm guessing that you must have worked with a medical team specializing in epilepsy rather than a general neurologist.

@hopeful33250 this procedure was done in 1976. It was done after I saw a neurologst at the Children's Hospital of Philadephia in 1967. A neurosurgeon who worked with a doctor specializing in epilepsy at Graduate Hosp. there did the procedure. I have since moved I live in Baltimore and see and epileptologist. She has me on a regimen of lamogrigine, Depakote and zonisamide. That is working better than surgery. I now have one seizure a month and they are all nocturnal.

Having one seizure a month must be a real relief. When you say that you have nocturnal seizures, do these happen during sleep or are they just night-time seizures?

These seizures occur both in my sleep and when I get generally when I get up to do something, i.e. go to the bathroom. It has been over a month since I have had a seizure. Not to be negative but I am waiting for my next one to occur, this is unreal!

@isittll
Hello Laurie,
I was just wondering if you had discussed with your Epileptologist about the potential risks of
S.U.D.E.P. (Sudden Unexpected Death in Epilepsy) The likelihood of S.U.D.E.P. increases if nocturnal seizures, (which are Tonic-Clonic) are not fully controlled although we'll hope for the best, or are on multiple seizure medications including Lamotrigine and developed the condition at a young age and have had it for a long time. I'd ask your doctor if there is indeed a connection between SUDEP and nocturnal seizures and lamotrigine. Although SUDEP is rare it is obviously very serious and I hope you have a very serious conversation about it if you have’t already.
There is however good news also, frequent
tonic-clonic seizures is the most concerning risk factor and assume you have significantly reduced that particular risk factor.
Try to get plenty of good quality sleep, if you have been able to identify any of your triggers obviously you need to try to avoid those. And I would invest in an anti-suffocation pillow. You might also want to consider a bed alarm or some type of monitoring device in case a spouse or significant other doesn’t wake up during the seizure. It’s an additional safety precaution.
Sorry if I got a bit carried away, I think you may have had it longer than me.
Jake

Yes.
Our 37 year old son with medication resistant epilepsy had this done.
However the procedure did not go well and the surgeon conducting this caused a brain hemorrhage.

@fbutterw20
Hello again,
I was just wondering if your son had this these tonic eye deviation issues prior to the inter-cranial EEG and hemorrhage?
Take care,
Jake

Yes he did

Dear Jake:
I haven't talked to my doctor about the SUDEP. I haven't seen her probably over a year. She wants to seizure monitoring. I'll have it done in due time. I have had seizures since age 61/2 /53 yr and 6 mo.

I'm sorry to hear that the procedure did not go well. Doctors do have the tendency to mess up on surgeries at times. A doctor messed up on the tonsillectomy I had at age 5 He did something with the clamps that cut off the oxygen to my brain. Now I have seizure cause of it.