Operation Of RNS System

👋 Hi, I was wondering if anyone who has the RNS could tell me how it feels and if enable you to get off some medication?

Childhood Absence Epilepsy

Our son was diagnosed with CAE when he was 3 years old, he's now 11 years old & under his consultant was gradually weaned off his medication as he had been seizure free for two years
So since November 2021 he's not been medicated, however over the last two months (from April 2022) we've noticed he's been having what we think to be absent seizures which is having a massive effect on him at school & at home. It's causing his mood to change, he's very tired, he gets headaches & loses… read more

Reading And Dizziness

I will get dizzy after reading a few pages. Generally followed by headache. This can last up to a few hours My concentration level is also very poor

Does anyone else experience this problem

I've Decided To Have LITT Surgery At The Mayo On June 30th. Can Anyone Give Me Information About Their Experience With This?

I'm interested in anything....recovery time, potential memory or vision issues, subsequent changes in meds, how long did you stay in the hospital, would you do it again?

Brain Tumor And Epilepsy

Anyone else with a brain tumor trying to control seizures? I have my second tumor, now in right frontal lobe, operculum and insula. Probably, but not certein, it is a LEAT tumor. Epilepsy came slowly last year and has exploded this spring. I know have focal seizures, often in clusters, every day. Have tried different combos and are now trying Vimpat and Lamictal. Any adults with a LEAT tumor and successful treatment?

Vimpat

How soon can you get side effects from Vimpat? I started 1,5 days ago and have started to feel tired and depressed already. Can side effects really jump in so qvick?

Help! Am I Becoming Tolerant? Do I Risk A Change In Meds?

I have an upcoming annual review with my neurologist and am thinking of raising that I’ve got SUSPICIONS on whether my medication is still working as 100% and that I may be experiencing tiny petit mal seizures.

What’s troubling me is that it could just be “normal space cadet” /“lost word at the tip of the tongue” exhaustion and not petit mal seizures at all…I hate the idea of disrupting my regime on a “suspicion” as I have no side effects right now.

Now I’ve started imagining scenarios of… read more

Anyone Else Dealing With Post Stroke Adult Epilepsy?

Husband has been dealing with various seizure meds for almost 2 years and they still are not under control. I could use a friend......thanks.

Has Anyone Every Awakened In The Morning Feeling Disoriented?

VNS & RNS

Does anybody have a VNS and an RNS that work together? Im trying to get the RNS but at a Previous meeting my dr said they were unsure because i already have a VNS. The last time we spoke to her she said shes spoken to other dr’s and they do have patients who have both and that they work together somehow? My VNS doesnt help me thats why she told us that, i told her we can turn it off and she gave us that info. I’d like to know if there’s anyone on the app who has both and how they work for… read more