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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
It's time to talk to your Dr about trying a new seizure med.
My partner is scheduled to have RNS surgery this month. I would appreciate people sharing their experience tremendously. Recovery time? Any difference in memory? Did seizures decrease?
@A MyEpilepsyTeam Member
I have had a few surgical EEG’s, where the doctors drilled holes in my head. The problem was I wouldn’t have any of my larger seizures for them to see so they were almost a… read more
I do take my meds for my condition, but I do my daily routine of prayer and bible study, I am a Catholic christian mix and I am not perfect and do sin, but that is my first above all that I go by, I… read more
Thank you @A MyEpilepsyTeam Member . I’m praying for less seizures . So far, so good. Still have seizures but so far it’s been less amounts.
My wife and I are both noticing a difference.
Good morning 🌞 I just found out I am a canidate to these three seizure procedures due to my focal seizures
•Anterior Temporal Lobectomy,
•laser ablation of amygdala and hippocampus, •Responsive Neurostimulation.
Has any of you heard of these or all had one of these procedures done on you?, and if so, does it work with your focal seizures? and was it worth it? I am lina and all the answers i get will be greatly appreciated, thank you
Same i have my focal weekly appreciate your comment, Im grateful it did wonders for you and will continue to
So, I've been seeing a regular neurologist for about 3 years now (partial seizures). I had a seizure last month and after that one my neurologist finally referred me to a seizure specialist, my appointment scheduled in October. It's going to be a full day event, I'm going to have a EEG done in the morning and I'll meet back with the doctor later on.
Patricia, yes!
@A MyEpilepsyTeam Member
You said the cord around the throat sounds familiar. I just saw where your son has asthma. That sounds familiar. After birth I acquired asthma and pneumonia.
It generally refers to seizures that go unnoticed and can only be picked up on EEG. I get them all the time.
Absent seizures would have a staring spell. Silent seizures don't have anything apart… read more
My son was on Vimpat for 6 years. I seen no seizures then he started having falls. He got a pacemaker and dr removed the Vimpat and put him on Keppra. Then added zonisamide then added Epidiolex and still has falls from seizures. He don’t shake but still has them.
Hoping for a cure for him.
I have what Dyscognitive Refractory Epilepsy when diagnosed by Dr. Veedu. I had a "craniotomy" back in 2018 and have had no seizures since then ! Great feeling too ! 💜
This thing makes me feel like coughing and throwing up.
That is what I have a stimulator. I was nervous about it but it has helped some.