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DBS for Epilepsy

Hey,

My name is Alli. I haven't really connected with a lot of people with Epilepsy. I started having seizures when I was about 10 years ago and have been struggling with them for most of the past 10 years. I was wondering if anyone has any experience with DBS? I would be grateful for any feedback.

Thank you

Comments

I've heard about Deep Brain

I've heard about Deep Brain Stimulation for Parkinson's Disease but I have no knowledge of how effective it is for seizure control.  I understand it would involve implantation of electrodes to the seizure focus. I'm strongly being considered for treatment with Responsive Nerve stimulation which also involves implantation of leads to the seizure focus.   You might want to ask your doctor about RNS and consider it.  It seems a more rational treatment as it is responsive; it only treats when seizures are detected.  Also it provides a recording of seizure activity.  

You might want to check out

You might want to check out the RNS. It is implanted in the brain too. You can find information on this site. Your neurologist would know if you can be helped with one.  As far as struggling goes have you worked with your neurologists to try other medications? Have you taken your meds correctly? 2 times a day does not mean 8 am and 6 pm. Meds taken 2 times a day means they should be taken 12 hours apart of as close to that as possible. There are many different medications out there to treat seizure. I know I have been on seizure meds for 50+ years now. I cam have  seizure wile we set and drink coffee  and discuss things and you would not know I had it. I know I am not a candidate for brain surgery because the scar tissue is in more then one lobe of my brain. So I worked with Doc and we got medications that worked at stopping the seizures. We then worked at getting a second medication to help it stop more. For me today I can have seizures like I have every 5-8 days. We are adjusting the dosages because the number of seizures went up since they used to be every 8-14 days. It just takes working with your neurologist and finding the medications and dosages that will work for you.

Yes.  I have been working

Yes.  I have been working very closely with my Neuro.  I'm on 4 different seizure medications 3x per day.  Unfortunately, I've just failed 4 other medications when I first started having seizures, and I continue to have breakthrough and absence seizures.  One of the positives is that I usually get an aura so I can take some Ativan to stop a grand mal.    My sister is a Neurosurgeon NP and just got back from a conference an they talked a lot about DBS.  I was just curious if anyone out there had any experience with it.

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