Trying to Open Up

[aquin]

Hi there, my name is Quinn and I've had epilepsy for three years. I have tonic-clonic seizures with occasional auras (those are always a fun surprise). Almost all of my seizures have been in public and have affected my life severely, so I don't think I've ever had the chance to open up and accept my circumstances fully. You'd think after having a seizure severe enough to leave me with post-concussive syndrome that I would be past the point of being in denial of my diagnosis, but alas, I still cannot seem to accept that this is a part of my life. However, I recently started seeing a therapist, so along with that and a breakthrough seizure I had today, I've decided it's time to try to connect with others who have the same struggles.

So, hello to all the other people with epilepsy out there. I'm not sure how active I'll be here, but I think I'll benefit from having somewhere to go where I know people will understand what I'm going through.

 

[Porkette]

Hi Quinn,

Welcome to the forum! I've had absence and complex partial seizures for 50 yrs. and I understand how you feel when you
have them in public because I used to work in public school and the staff and students would see me have seizures but I found
after I opened up to them about my seizures they were very understanding and it didn't bother them that much if anything after
I had a seizure they would just ask me if I was feeling okay and we would carry on like nothing happened.

What really woke me up is when I saw other people out there in the world who had disabilities worse than my seizures and then I realized
it wasn't so bad. I also look at all the famous people who have epilepsy and how that didn't stop them ex. Elton John, Prince, retired pro-
fessional football player Alan Faneca and many more.

Take my word everyone here on this forum is great and they have been very supportive and helpful to me over the yrs. This
is the best forum I've been on in my own personal opinion. Wishing you only the best and May God Bless You!

Sue

 

[Sabbo]

Hello & welcome to CWE! I've had seizures since childhood. Nobody knew that the "weird feelings" I kept complaining of were actually seizures until I had 3 or 4 grand mal/tonic-clonic seizures when I was 14 (none since), & one of the feelings occurred during an EEG. About 24 years ago, I suddenly started having complex partials. Many of those have put me in very dangerous situations or caused me to injure myself.

 

[XxBlaqkxX]

Hello, Quinn! It's nice to meet you =)

I've had seizures for over 20 years and I still won't accept that they're part of my life. I don't think I ever will. I will never get used to seizures or the way they affect my life and how unfair it is. It's okay not to accept it. I was about 9 years old when I started having seizures so not being this way my entire life and then that sudden change made things horrible.

 

[Nakamova]

Hey Quinn! Make yourself at home.

It takes awhile to come to terms with epilepsy -- let's face it, it's a weird disorder that comes with a lot of baggage. It's not easily understood by others or by ourselves.

I've had enough seizures in public that I just don't care who sees me any more. I still don’t dance in public though -- now that's really stressful.

 

[Sabbo]

I agree about just not caring who sees me have a seizure anymore. I've taken/tried every AED out there for simple &/or complex partials. The ones I wasn't allergic to, I took for a while--the longest just over 20 years. They'd keep me "seizure-free" for a short time, but within 10 months, the breakthroughs would start again.
I feel family members are sometimes more embarrassed than we are, especially because of what people immediately think of when they hear "seizure" or "epilepsy". Another thing that sometimes happens is strangers are often very confused if a person's seizures aren't like what most people automatically think of.

 

[Plasticmask]

Welcome, Quinn! I had childhood epilepsy (falling and head bobbing, things like that, I think that it's called atonic epilepsy) that I inherited from both of my parents. It stopped, for MANY years, but returned just as it did for my parents, in late age. I'm TOLD that it is due to a bacteria that I caught whilst traveling, that I have in my brain, that made mine return so much earlier than my parents. My Father died because he fell and hit a night stand, dying in a nursing home. My Mom still has them, and they terrify her. Well, who is kidding whom it terrifies us all, the total lack of control and all of that. Now that I'm dying from the bacteria (well it's a bacterium, the difference of which I won't bore you) I have a lot more seizures than my Parents, had to give up driving completely (even gave away my car) and am homebound out of necessity. Don't mean to ramble, sorry, it's part of my Condition now, like my aphasia. My Point: You are NOT ALONE, and you are in the right Forum. Nobody judges you, nor will they snob you or insult you. It's a good Forum. As Sabbo said, it seems worse when people see my wrist band stating the single word "epilepsy" and it makes them terribly nervous just being around me. Family included. Again, be welcome, and know that you are in the RIGHT PLACE.

 

[suebear]

Welcome to CWE, Quinn. I've had epilepsy all my life. Had gotten it from reaction to vaccine and since then going through all of the steps to heal between trying all the various medications on the market then going through different surgeries which did improve my situation very much so. I've actually had the chance to try another medication that came onto the market once again so making progress with it. I'm in the situation where I can't drive due to the seizure type, complex-partial. Even though they have dropped to absence there still is a chance the complex-partial can come about so to protect myself and anyone it is better I not get behind the wheel for now. This has been making it difficult for me to locate work so what I've been doing is working from home the past 20-plus years. Have had the luck at finding jobs to do just that and I actually just found another job project that starts in mid January for six-months. Sorry for my rambling on and on.
My point is, you've come to a fabulous board when joining CWE. Everyone is very friendly, helpful, and just like family always sending a welcome hand when needed.