Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Ranting

I am 28 this year. I have epilepsy since I am 23 years old. At the point of time, I am taking my Bachelor's degree. Before have epilepsy, I was able to drive since I am 19, attended and clear my national service with top combat fitness, studying full time and working full time at the same time.

The first time it happens, I lost consciousness and the next thing I know I am in an ambulance. I was happened to be on a bus to my workplace from school, and luckily was with some friends. The bus have to stop and apparently, all passengers has to get down and take another bus, whereas the bus driver have to write a report on it. Quite funny though. That was the first time, stayed in a hospital for 2 nights, did CT scan, MRI and EEG. Found nothing, discharged on the 3rd day, and I went to take a term test for one of my module straight after that. 3 months later, graduated with my degree, looking for a new job as my job do not have much opportunities in the future. Another seizure happened at home, knock my face on top the edge of a cupboard, had a scar on my eyelid, bleeding non stop, went to the hospital and 4 stitches on that thin skin, f**king hurts as the doctor did not give me any sedatives.

Went on epilium 300 mg after that, another few seizures happen, went on to 1k mg. Had a weight gain of 10kg, possbily due to holiday as well. After that seizures still happen, my doctor decided that epilium is not enough, add on lamotrigine, and so on and so for, now i am on Kepra 1.5k and lamotrigine.

Meanwhile, I went to work as an insurance agent, as it is quite a self-employed work. Having free time to rest, as I was advised on having less stress. Had a gf at that point of time, well broke up 5 months after officially having diagnose epilepsy. Well, is ok, i hate her and her family anyway, felt discriminated when they heard of this illness. Had no seizure for almost 9 mths, try to continue my life just like pre-epilepsy, drinking, clubbing and smoking. Had seizure once more, decide to take a break from work. At a same time, have a new girlfriend, is a very nice girl, very understanding, very nice to me, and did not discriminate me for epilepsy, I love her so much for everything she done for me ever since. Tried something else, a small online business on my own with some support. After that, having small memory loss seizure here and there, but not much of impact on my life, and feel that I might be able to work full-time employment again. So i went to be a banker. Well, start first few months of the work is fine, hitting sales target, having some recognition. However after that, seizures start to happen again, at the same time, my manager was transferred and the director took over direct control. Being in the best region in the whole distribution, f**king mad director, mind-f**king me all the time, well i guess some management are crazy in some way. and at the same time, seizures happen every month, just like a female's period. Feeling f**king down most of the time, feeling no motivation to hit my sales target, feeling frustrated and feel like slapping customers now taking up any deals with me. After a month, I was put into a sales improvement programme, did not progress on anything, got screw, and decide to quit the job. I like that job, but I feel like this epilepsy is a liability. My seizures are getting worse, maybe not as worse as other people, but from my previous state. Feel as if a bomb, that is gonna explode anytime.

Currently, I am looking for a new job. Just went for Video EEG, and doctor suspected that I have this weird, focal cortical dysplasia. Well, at least found something wrong with my back left side of my brain, some weird bad cells. Going for a pat scan and maybe another MRI after that. Had a few calls from my job application, heard of epilepsy, straight away, 'Oh, thank you for your interest, goodbye.' Seriously, f**k you.

Well, sometimes I felt that one of the seizures should just kill me, and maybe let me die in my sleep. But on the other hand, I do not wish to die at all, and feel that I should just overcome this problem. I have my family and my girlfriend support, I do not want to disappoint them. I feel super frustrated as at this age, I see people at their prime or fighting to their prime, some have own a mercedes or bmw or even porsche, well cars in my country is super ex, due to an additional tax. But most importantly, I cannot drive due to this illness.
Sometimes i felt lazy, i do not know whether is it due to the medicine, or maybe i have lost a motive in life somehow. I do not dare to show this part of me to some of my friends or relatives or family. Although ya, I did share, but only with my mum and my aunt. Both of them had breast cancer, and I guess they somehow feel what I feel. My gf yes, i shared with her, but not totally, i do not want to worry her as well. I want to give her a good life, despite her saying that she is happy even i do not earn much. Well, maybe due to my ego, my pride, I do not want to lose out, i have friends saying that their partners do not have to work hard, they are going to work hard and earn money for them. I lost the drive and motive and target, even i have, i do not have the energy for it. I always tell myself that, there are people with worse condition than me, however, we should not compare like this, if you want to compare, why not compare like people who are better and healthier than us.

Recently, i watched the joker movie, it is quite sad that the joker has the illness, and everyone thinks that he is mad and expect him to be normal. Come on, people, especially those able and healthy and can do every single shit like a superhero or a carry, i sometimes really hope one day, you have something like me, you understand how I really feel, how it feels like having the fear of having seizures, losing conscious and maybe die anytime. “The Worst Part Of Having A Mental Illness Is People Expect You To Behave As If You Don't.”. This quote is from the movie, although my illness is not as bad as his, I still felt this way.

I have seizures anytime, and randomly. Once playing bowling, few times playing computer games, few times working. Well, not all the time at a dangerous place or what, but what if, there is no one around me at that point of time, i might have choke on my saliva and die.

Well, I am here to rant actually, not here to write a perfect essay, i do not know who to talk to, i do not wish to worry my family and gf. I wonder if anyone here to feeling the same as me, or maybe have some comments.

Thank you all.

Comments

Hi Dyjon,  Thanks so much for

Hi Dyjon,  Thanks so much for sharing your story, it sounds like you've been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we do have resources available that can help. If you ever need to speak with someone immediately, please contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org  epilepsy.com/helpline   or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns . It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   Treatment varies for each individual, so it’s good that you’re continuing to follow-up with your healthcare team to determine what individual treatment plan is best for you and if you experience changes in seizure types, frequency, behaviors, side effects.  Explore the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-h... you feel you've been discriminated against because of your Epilepsy and would like to connect to the Epilepsy Foundation Legal team please complete the form found here: https://www.epilepsy.com/node/2013161                                                                                                 Additionally, you may contact Epilepsy and Seizures 24/7 Helpline: contactus@efa.org, 1-800-332-1000 , to speak to our legal team review the legal help section of our website: https://www.epilepsy.com/living-epilepsy/legal-helpA key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about resources that are available & when help is needed.There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor to see if a seizure alert device is an option you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Ale...   Learn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe                                                                                               Track your seizures, record your medical history, set reminders,manage medications, side effects, moods, triggers, or other personal experiences using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms  

Hey man, I felt the exact

Hey man, I felt the exact same thing when I started having seizures. It started when I was 14 back in 2010 and even though I kept a smile on my face, deep down I thought of simply ending it and taking my own life. My advice is to simply think to yourself "What would they like better? Me asking for help, or me getting buried?" This may sound dark but you gotta understand that the darkest nights lead to the brightest days. Best of luck man.

I was using Keppra for a few

I was using Keppra for a few months, it caused major depression for me. It's a nasty nasty medication. I'm currently on Lamotrigine also and no complaints. Though, I hope all is doing well for you !!

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P