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Epilepsy

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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Operation Of RNS System

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?

A MyEpilepsyTeam Member said:

Thank You Sean 2,
That information is very useful!😉

posted 6 days ago
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Childhood Absence Epilepsy

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

A MyEpilepsyTeam Member said:

I've had absence seizures (Jeavons syndrome) my entire life. Most of it was med-free because we didn't feel the the side effects of the meds that were available in the 80s justified the pay-off. I… read more

posted about 15 hours ago

Reading And Dizziness

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

A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member, After just 2 Years, I ended up knowing what to do! But once I stated Volunteering for Epilepsy Sudbury-Manitoulin in 1983, I found out more stuff about Epilepsy! Then in… read more

posted 6 days ago

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

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?

A MyEpilepsyTeam Member said:

When it first came out, I was so excited..wanted to go for that so bad. Then the Doctors told Me I was not a candidate because of the two Temporal Lobe Surgeries already had (left). Of course They… read more

posted 10 days ago
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Brain Tumor And Epilepsy

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?

A MyEpilepsyTeam Member said:

Thanks, I was thinking about the epileptic part. LEAT tumors are known for being medication resistant so I was looking fo someone who has succeded. Sorry to hear you also have an unoperable tumor… read more

posted 8 days ago
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Vimpat

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?

A MyEpilepsyTeam Member said:

Thank you all. The side effects are starting to decline already and I haven't had a seizure in 30 hours now. I used to have every day. Keeping fingers crossed this is a new pattern and not just an… read more

posted 8 days ago

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

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

A MyEpilepsyTeam Member said:

I'm on Keppra myself, though I'm on other AEDs on top of that, but I think you should keep a diary of how you are feeling, then when you go for your review, then the doctor can look at the diary and… read more

posted 9 days ago

Anyone Else Dealing With Post Stroke Adult Epilepsy?

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.

A MyEpilepsyTeam Member said:

I’ve been on the majority of meds on the Market. Non have fully controlled my seizures.

My Epileptologist told me that I have Refractory Epilepsy. Just means no AED meds are able to control my… read more

posted 11 days ago

Has Anyone Every Awakened In The Morning Feeling Disoriented?

Has Anyone Every Awakened In The Morning Feeling Disoriented?

A MyEpilepsyTeam Member said:

In my case, I only know that this was related to a seizure because I was in EEG Long Term Monitoring when it happened. And then my conversation with the nurse when I woke up. I had another one a… read more

posted 4 days ago

VNS & RNS

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

A MyEpilepsyTeam Member said:

So their those electric stimulators that epileptics have surgically implanted to control seizures?

posted 3 days ago
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