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I Was Diagnosed With Epilepsy In 2021 At 55.

I Was Diagnosed With Epilepsy In 2021 At 55.

I have had so many tests with no real answers. The docs just want to keep testing on me. Now they are talking about doing test with Phase 2 electrodes so they can find the source and dig that part out. I am having alot of stress about that. I am not confident with them. They are Stanford docs so they at the top of their field, I guess. Not sure I want to have my brain touched electrodes and really not sure about digging out parts. I have been on 5 different AEDs. Stopped the Gran Mals but having… read more

A MyEpilepsyTeam Member said:

Oh trust me I get it.
My family never would have know had epilepsy, had I not had 3 GTCs "Gran Mals" in high school. Even though, my real struggle is focal seizures. I suffered with those my whole life, some of my earliest memories. Even now after surgery it's "So how is it all going with.......that?" Which is completely understandable. Just like me trying to sympathize with my wife's period.
Epilepsy is a chronic medical condition that affects all us in different ways. Some of us can still drive, work, lead relative normal lives but we are still tormented. Some of us have to live with someone, can't remember what we did yesterday, have relationship problems, and have fears of bathing by themselves. All of our struggles are different. Or paths of treatment is different. But this site has been a God send to me.

posted 5 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member trust how your body feels / intuition if your not having peace of mind with the idea of having surgery then don't do it , you gotta be at peace with your medical decisions especially surgery.

I need to have bowel surgery at first I didn't want to simply because I don't want to go through another surgery I decided that I wasn't going to go that path but I didn't have any peace of mind with that decision I was constantly worrying about what could possibly happen if I didn't .

I ended up getting the ball rolling for that surgery to happen and I have total piece of mind only concern is obviously recovery and if a might need a bowel resection cause recovery will be longer with a bowel resection, but I know and feel it's the right decision just like with the previous surgery I had I didn't want to go that path but I did and luckily I did as I wouldn't of known I had stage 3 endometriosis which has spread to my bowels with a nodule found would hate to think how much worse it could of been.
I think any type of invasive tests especially with the brain involved is quite scary.

edited, originally posted 5 months ago
A MyEpilepsyTeam Member said:

Shoot i can barely remember anything anymore. Hit my head so many times plus someone tried killing my ass once lol. Heads a little to strong though due to all the hits. I got that super hero skull power lol. And yeah everyones different but doctors need to see patients sides of stuff better and not just say no 24/7 if we ask to be taken off meds. They shouldnt be allowed to say no if it is our choice whether or not to take them. They should have to take us off them. I hate living with my family so telling disability they can go piss off and im going with some friends to follow my dreams of being a glass blower and grower for disabled people and epilepsy patients that tend to break their glass a lot.

posted 5 months ago
A MyEpilepsyTeam Member said:

Thanks so much. It does help a lot. I wish you the best on the next surgery. This site and the people willng to help eachother means a lot to me. My friends and family mean well but just don't get it. Everyone's replies are much appreciated.

posted 5 months ago
A MyEpilepsyTeam Member said:

So full transparency I am getting ready to go back because I am still having seizures, but I would do it again with the same results in a heartbeat. I keep telling people even though it wasn't 100% successful it was 100% worth it

What was it like for recovery? It was rough, physically and emotionally. my surgery was technically a failure. So I struggled with the did I do this for nothing. On top of a it was very painful to recover. I had a headache for about 6 weeks. I was very sensitive to light and sound for 6 weeks. Went back to work after 8 weeks but still struggled with light and sound for about 10 weeks. Since I had a part of my hearing cortex removed I am still a little sensitive to sound to this day 10 months later.

How did you feel after? I am still having seizures but they are shorter and weaker than the ones I was having before the surgery. In addition I am triggered less.

Do you still have to take meds? Yes. But If you have a successful surgery Drug free is a 100% possibility but most doctors will slowly wean you off drugs after a year of 0 seizures. That was at least the Epilepsy team at Johns Hopkins.

Can you think clearly and not lose thoughts and get lost in conversations? 1000% Percent. I am a new person. I am dyslexic and have struggled to formulate complexed thoughts and communicate well my whole life that drastically changed for the better after the surgery. Once I came back to work, I started to take on new bigger administrative heavy projects that I had never done before. This is not a guarantee for everyone. My EEG showed that my brain was firing every second of every day potential my whole life. So when that spot was gone it cleared up so much noise in my brain to function on a whole new level. This was not something my doctors expected. But I had one of my Epileptogist use the example once. "If you have a disruptive kid in a classroom, the class struggles to learn. Especially when they get mad and start flipping desks and it takes a while to put the classroom back together again."

So hopefully this helps you!

posted 5 months ago
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