I was sent to the Head of the Epilepsy clinic at UCLA in the 70’s . He was cute and busy. He suggested surgery. My focus on the EEG and the CAT scan were done. I really trusted him. I was told I had an obvious seizure focus. I felt let’s get rid of it!

I started to have status attacks after the surgery. Why? I had another surgery in 1991. My seizure focus was about the same but it had spread via the EEG. The MRI was done. Nothing specific on MRI . They removed part of the hippocampus on my left side .

I got married and we eventually moved to MD. I had 2 children. I would have seizures and periodic status attacks. I was sent up to John Hopkins. They did a MRI showed it was deep riding on my 5 th ventricle that is why my seizures are hard to control. Dr. Lesser was great. He suggested surgery that might help at that time. I did not want to be a Guinea pig!

They monitored me on telemetry . He wanted to see how often my seizures occur. I was having them and not knowing them. He really suggested surgery on the thalamus. I told him that is the baby of the brain. He mentioned the other surgeries gave me more focuses. That this would be the best. I talked to my husband. I came back. I’m not ready for it. I had a few more status attacks tried different medications. I was in trial for one medication and it helped. I felt I will stay on meds. Now 2023 Xcopri is great!

You shouldn't be making the med decisions yourself but should def have a big input and can make requests with reasons why and a good doc will actually listen and take ur thoughts and opinions into consideration. But only a Dr should prescribe medications especially ones that effect the brain for disorders as serious and debilitating such as epilepsy. That could get extremely dangerous if you're the one making those calls.

@A MyEpilepsyTeam Member Trust me, I understand completely! my meds currently are Vimpat, Xcopri 100mg each 1 time a day. I take them at night. I WAS on 300 mg of Topamax XR along with that. I took that at night as well. I told my doctor it was too much for me. I couldn't freakin' think clearly! I hands are constantly numb and I need to be treated for glaucoma. ALL because of years of being on TOPAMAX / topiramate! My last TC was on 4/28/22 I had 3 of them. I was hospitalized, under observation. I was having a series of them prior to that date, of going in the hospital. So my doctors were say that I should consider surgery. Well, I was tired of having seizures so I agreed. Not to the surgery, but the observation. Well, low and behold, I'm here on our site and I read an article or someones response about being OVERMEDICATED! How it can BRING ON SEIZURES. I start researching that. Mind, you my doctor wanted me on more meds. I tell them NO! I need to think as clearly as I possibly can. Our physicians are trying to help us, I truly believe that. But, we have to help ourselves! Listen, I've had a stroke because of epilepsy! But, thank my GOD I've recovered! I'm getting better and better. But, my memory...😂
A funny thing is, I truly care about you guys. No really I'm telling you my business!! That means A WHOLE LOT TO ME! 🙂

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A MyEpile...

Guys with so many of you, your thoughts are mine! Of course I’m not saying as patients we should decide our medication course ourselves. I do 💯 percent believe we should be an active participant in the decision making process. How many of us have taken drugs that we knew weren’t right for us! Yet, we heard just give your body time to get acclimated to the medication. But, when I tell you this medicine isn’t working for me, I’m then “labeled sensitive to medication.” Really, because I’m making it known what the medication is doing to me, how it makes me feel?! THAT is why we must work WITH our physicians. We’ve gotta speak up, and not be timid in doing so. This body is the only one we get! I’ve said it before and I’ll keep saying it. I’m worth a cure! A host of side effects or an episode! WHY? We’re being told to ACCEPT, memory loss y’all. Idk, I think any doctor who is willing to work with their patients opposed to just making decisions FOR them is a keeper!
Think about the scene from the movie Jerry Maguire. “ Help me, help you.” That’s what this doctor is saying in my mind. 🙂❤️

@A MyEpilepsyTeam Member It should always be a teamwork decision but the team should be made up of GPs and Specialists. At the end of the day, it is up to them to make the right decision.

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