I Am A Person With Epilepsy Who

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Comment by bryan farley on April 26, 2012 at 12:49am

Terry,

I don't have an answer for you about the surgery. When I had a basic surgery that had nothing to do with epilepsy, I was nervous and lacked energy. Stress saps energy. 

When I was nervous, I forgot to drink water. I did not eat enough healthy food, and then I did not sleep well either. All of these things affected my energy. Remember to drink water and breath. If those don't work... well, sometimes we just get exhausted. It will pass, and if it doesn't, document it and discuss it with your doctor.

Comment by Terry on April 25, 2012 at 5:47pm

Hi. My name is Terry and i would like to here from someone whos had the hippocamps and the amigdaula removed. sorry spelt wrong. I am geting ready for that surgery. with epilepsy do all of us stay sick all the time . I'm so exhausted . enigery where do i get some naturaly.

Comment by sue sullivan on April 16, 2012 at 9:54pm

I really needed to hear this today! Thank you! I can't hide. I want to but can't. Thanks to my husband, kids, other family and people like you Bryan. Well said and I thought genuine. I normally don't put myself out there. I've had epilepsy for 13 years now with seizures most days. I am going on plane next week and have no idea how that will workout. It's likely I will have a seizure in front of people. At work most know and it is still feels awkward. I always think "keep a good attitude". Truth is, I think it will always be awkward. I have learned to share only when it feels right. When people do share back it's the best! Thanks for the inspiration.

Comment by bryan farley on April 14, 2012 at 5:27pm

Erika,

Thank you for your kind words. It is strange how little I feel that I have done now, especially considering how long it took me to become visible. For years, epilepsy dominated my life (even though I "hid" it.) Now, I live so much more freely. Maybe my health is better. Perhaps I just take care of myself better, so my health is better.

One thing I know: the support from people like you help me. Hearing how you have lived and struggled help me know I am not alone any longer. 

Thank you and congratulations.

Comment by Erika A. Brown on April 14, 2012 at 2:25pm

Good afternoon Bryan,

 

You are able to capture how I have felt for the better part of 17 years. I was first diagnosed with Juvenile Myoclonic Epilepsy (tonic-clonic seizures) at the age of 13. It was a very difficult time b/c I always knew I didn't fit in w/ my peers and when the class learned about what I had it made it even worse. It was that very hardship that compelled me to reach out and make some truly worthwhile friendships in high school where I could open up about my disorder. They made me feel not ashamed and were genuinely concerned about my well being (they would go out of their way to make sure that I even took my pills). Unfortunately, over time opposing factors forced me to realize that they truly didn't understand what it meant to live with what we have. As adults, they didn't understand why I was unable to do certain things or in essence live a similar life to their own. I recognize that this was making me miserable and I had to sadly end certain friendships in order to find myself and what truly made me happy. I do admit there were other negative aspects I was going through and have made important strides to overcome them. It is an enormous benefit to speak with others like myself on this board b/c there are certain areas that only we can understand. While enrolled in grad school, a fellow student discovered what I had and placed me on such a vulnerable spot in front of another student inquiring that she wished to learn about all facets of life and wanted to know what it was like having epilepsy. I was upset, angry and trying to keep it all together. You're right -it does feel like you have to give up so much of yourself w/out that other person giving up anything in return. I even had a Nueropsych class where some classmates were under the delusion that epilepsy was just a form of malingering. So I just had to enlighten them esp. since the professor didn't. Despite all the hurdles I have faced with epilepsy, I managed to obtain a B.A. in Forensic Psychology and have recently been accepted to a new graduate school in order to obtain an M.A. in International Psychology. I have great respect for you that you made such a personal and very powerful message.

Comment by Robert Kiggans on April 7, 2012 at 10:30am

Good Morning,

I am a person also with Epilepsy.  I found out when I was 6 years old.  My elementary and high school years were interesting to say the least.  I had seziers grandmale type.  I was told that I could not go to college or do anything by teachers ect.  I am now an accountant with 15 years of experience.  By the way,  I went to college graduated with an associate degree and Bacholor degree in Accounting.  I am currently studying for the CPA exam and I have been sezier free for around 15 years.

 

I like to help others with Epilepsy.  I know how hard it can be but I also know that it is not a death sentence.

 

I look forward to hearing from everyone.

Comment by bryan farley on April 6, 2012 at 2:11pm

Thanks Anthony for responding.

Thank you to all the others too. I will have photos posted today from last weekend in DC. Such a great event to see thousands of people from all over.

bf

Comment by Anthony Fernandes on April 3, 2012 at 3:58am

Bryan,  I'm a person with Epilepsy also.  My Seizures only occur when I'm sleeping.  I've had Epilepsy since I was born.  I was put on alot of Med's. and then they wanted to do a Right Frontal Lobectomy on me.  I thoght this would cure me and they told me it would.  I'm still haveing them in my sleep. They want to do a V.N.S. on me, But, I had second thoughts.  There could be alot of negitaive things about it and I want to do further researching on it.  What ever they do on you, You do researching on it also!!!!!!!!!!   You take care, And take care!!!!  Contact me.  Anthony .

Comment by Kelly Rummel on January 29, 2012 at 11:20am

Bryan,
You inspire me...and I think you REALLY inspire other as well, to actually SHARE their stories, and make them feel like it's OKAY to talk about their Epilepsy. THANK YOU for all you do for this site, and for the E community.
~Kelly,mom2Wesley 

Comment by ejl1558 on January 20, 2012 at 2:28pm

I am a person with epilepsy who didn't want to see epilepsy control me for the rest of my life.  I was enough in control to work the last 35-plus years but I wanted to stop relying on other people to get me to and from work and stop their need to keep an eye on me.  I watched someone have a temporal lobectomy on Discovery Channel and saw my chance to gain more control.  I had the VEEG, a WADA test, an IQ test and then the surgery and I'm happy to say I've been given 11+ years of total seizure control for a true second chance at life.  There are three people I'll never forget and that includes two who never made me feel guilty to depend on them for rides to work and one who told me if I ever felt like I was going to have a seizure at work to let her know and she'll be sure I'm OK.  Of course, I'll always be thankful for my family and friends but most of all, I'm thankful for the opportunity to show how this guy can now take care of himself.  The only way to make me happier would be to see as many people as I can receive the same fortune I did.

 

Ed

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