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coxfamily

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I'm a mom with a 30 yr old son who has had epilepsy for 7 yrs. His life and ours have been put through tremendous challenges and aside from the medical help my son has received, I am searching for emotional support that seems to be lacking out there. We as a family have had counselling, but it seems that no one that councils has any experience with grand mal seizures and the devastating aftermaths that go hand in hand. The sympathy is there but it seems like (because the illness is not obvious to see), the advice is lacking in logic when given to the patient and family. Our journey as a family is filled so much with uphill battles that it is hard to see any future that will be helpful to the forward process for my son in things like working, dating, living on his own, coping, etc..... I hope that this forum will link me to others like us struggling and perhaps even having some hopeful comments. Thanks. C
 
Hi C, welcome to CWE!

My heart goes out to you. A health crisis or chronic disorder can affect an entire family in complicated ways. I assume that your son's seizure's are still uncontrolled? And that that contributes to the stress and uncertainty you all feel.

Everyone has a different path with epilepsy. Mine has been one of the luckier ones -- my grand mal seizures are medication-responsive, and I'm able to live and work on my own. CWE members have a variety of stories and tips to share so please make yourself at home and ask away.

:hugs:
Nakamova
 
Welcome to the forums.

I too consider myself one of the luckier ones, at least in terms of epilepsy, but it has robbed me of the ability to drive which is a huge boon. I also have a mental illness and I quit my job because of it at the end of December. I'm fortunate that I had 2 jobs at the time and I could continue working part time. I just hope I don't lose my career which I worked so hard for.
 
At times I think my epilepsy is harder on my family than it is on me. They are the ones who see the seizures happen but I am the one who has them and I usually don't even know I've had it.

My first seizure happened 15 years ago and it was a very bad grand mal. I had to be put in a coma for almost 2 months because my brain would not stop seizing. When I came out of it I lost over 10 years of memory, bits and pieces were still there but not much. I can't tell you how happy my family was that I still remembered who they all were. Even now sometimes after a seizure I will loose days of memory. My long term memory is horrible. Things will start to fade away after a few months.

At first I was having seizures of all types left and right, probably over 20 a month. Luckily I'm down to an average of 5 a month, mostly partials, but there are still some grand mals thrown in there.

It took few years before they would let me stay at home by myself. I felt like a little kid again because any time they went out I had to go stay with my grandparents. Even now I know they are afraid to leave me at home by myself. They are all afraid I'm going to have a seizure again like the first one and who knows what might happen because there's no one there to call 911. They had to realize that I was an adult and it's something that I needed to do and accepted it. It's something he can do and don't be afraid to do it, and you can't be scared to let him do it. I haven't lived on my own since I've had epilepsy because I met him about a year after I was diagnosed and we moved in together about a year after we met. I'm still here in the house on my own quite a good bit because he works and I don't.

I can't drive anymore because of the seizures and I had to quit working. There are many people who still do work though so they will be able to give you some advice on that.

As far as dating he has to find a woman who knows what she's going to be getting herself into and be able to handle it. The man I was dating at the time wasn't able to. He lived about 45 minutes away and any time we wanted to get together he had to come get me because I wasn't able to drive to go to his place. I was still having a lot of seizures and I don't think he could handle that either. He really didn't break up with me he just sort of faded away, not wanting to get together and stopped calling. I wasn't upset very much about it though because I didn't remember much about him.

I met my now husband about a year later. I had my first seizure in front of him 2 weeks after we started dating. I know it scared the crap out of him. We told him what to do if I have a seizure and if I didn't start to come out of it in 5 minutes to call my parents. After 5 minutes I was still seizing pretty good so he called my parents and they came to his apartment and we all went to the ER. My parents thought for sure he was going to want to to stop dating me after that but he said I was great and he wasn't going anywhere. A few months later he started coming to my neuro visits with me because he wanted to learn as much as he could about epilepsy. Your son might not be as lucky to find that woman right away but she's out there, he just needs to keep looking.

I've gotten a lot of help and advice from this forum and I hope you do too. It's nice to meet you!
 
Hello and thanks for the welcome - Nakamova ,resaebiunne and valeriedl. It's hard to believe that I'm finally meeting others like us. This is a relief. My son's story has similarities to all your comments. This communicating on internet is new to me as I have not had a computer for a very long time, so I'm hopefully not going to mess up as I try to figure this format out. It is nice to meet you folks also. C.
 
Hi C,

Welcome to the forum! I've had epilepsy for 46 yrs. now I was 10 when I first started having seizures and back in the 1970's public schools weren't to with it when it came to a person who had seizures so I ended up in a boarding school for 3 yrs. during high school because the public school I went to didn't want to deal with students that had epilepsy or any other neurology problems.
I've never been able to drive in my life but I learned that Elton John, Edgar Allen Poe, Agatha Christie and many other famous people have epilepsy along with retired professional football player Alan Faneca who played for the NY Jet at one time. Once I learned that all of these famous people could live a normal everyday life it gave me confidence not to give up. I got a job working in public school as a teacher aide in special Education and I teach both students and staff about epilepsy along with being able to relate to students who have epilepsy or other neuro problems.
When I was younger I wanted to give up but I told myself no and got out there and lived on my own paid rent and worked full time and your son can do the same thing.
I've been married for 31 yrs. now and my first students are 49 and 50 yrs. old tell your son to have faith in himself and to never be afraid. Here's wishing you and your son the best of luck and May God Bless The Both of You!

Sue
 
coxfamily

Thankyou Sue - Your comments and stories along with others have got me thinking and thinking with renewed hope. You're all inspirational.
C.
 
Hello & welcome. I was having simple partials since childhood--I would complain of "weird feelings" in my head. Until I had some tonic clonics, & 1 occurred during an EEG, they weren't diagnosed as seizures. About 18 years ago, I suddenly began having complex partials, too. I'm married & have 2 sons.
I took driver's ed, but when a simple partial occurred right before my final behind the wheel practice, I made the decision to never drive.
I completed a Bachelors, but don't work because of some very scary things that happened. Once, for example, I was at the train station, & had complex partial. If another person hadn't been there, I would have fallen on to the tracks.
 
coxfamily

Hi Sabbo - My son had 2 febral seizures when he was an infant due to high fever and grew out of it as I was informed would probably happen. When he was around 6 he would experience something called night terrors in which he also grew out of. As he aged he had experienced some minor dizziness and blanking out during hockey-which we were not informed of till most recently in his adult life. He has been in a few car accidents where one of them he had minor head trauma. Not knowing anything back 30 yrs ago about epilepsy, I can say that these incidents probably all played a role in the development of his condition today. During his grand mals he stops breathing and requires a sublingual lorazapam to stop the seizure and get him breathing again. He often falls and receives head wounds that so far are just bumps and bruises. The aftermath of his seizures can be lasting up to 2 weeks of headaches, sweating, depression, sleeping and general mixed up overall behavior. We're happy that he lives at home with us right now as he has no one to help him otherwise. Thankyou for sending me a message - nice to meet you.
C.
 
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