Ready for the end.

im sorry your friends abandoned you. My daughter has seizures as well. Have you thought about attending a church or some other community event to try to meet new friends? Im sure you're not alone feeling this way. Have you thought about even talking to a therapist? Even with troubles, life can still be fulfilling

I can't imagine what you are going through but others feel this way, too. It is a huge loss of independence simply to not be able to drive, among all of the other ways epilepsy impacts people. My daughter is 23 and going through similar challenges. Alcohol is her biggest trigger and everyone she meets her age drinks ALOT and all they do on weekends is hit the bars. Even if she doesn't mind drinking soda all night, she doesn't have fun when everyone is drunk and she is sober. Dating is hard because she lives at home. She has been suicidal several times and having a therapy program that used DBT (Dialectical Behavioral Therapy) saved her multiple times.

Are you being seen at Mayo? We received completely different treatment there than our home hospital offered!

I also wonder if joining a church or volunteering somewhere that helps you get to know a group of people outside of your family would be helpful. I am not religious anymore so I joined Rotary and have a lot of opportunities to get to know people that way. I know there are "meetups" online, too, where complete strangers meet around some common interest and I know lots of people who made friends that way. Also, living in a big city where everyone uses public transportation is an option to take away the frustrations and stigma of not driving. If that is possible.

Have you thought of getting a seizure dog? There was a great discussion on here recently about that. However, any pet can really help combat loneliness and help you feel a sense of purpose. Some dogs have seizures and they hard to find families for...:)

I know this might not be helpful and it would be better if my daughter were here to speak for herself, but you are not alone in feeling this way. Even when she wasn't suicidal, she often spoke of just waiting for life to end because it is such a struggle. It breaks my heart because we love her so much. It sounds like you are loved by your family as well but I understand wanting more. I hope you can find it.

Hi, @kelli1989 - sorry to hear your life got really bad after learning you had epilepsy at 13. The syndrome that hospitalized you for 3 months sounds terrible.

I do not have epilepsy, but if I was unable/told not to drive, I think I'd feel like my freedom had been taken away. Like @adoptivemother said, it’s important to know you are not alone. I hope you read her helpful post.

I’m tagging @santosha @jakedduck1 @tonyde @dannoyes @methel @motobee who have also dealt with epilepsy to provide some support.

You titled the discussion you started here as "Ready for the end." I'm not sure if you meant the end of troubles with epilepsy or the end of life. This is a safe place to talk as you feel the need. I also want you to know about the 988 Suicide & Crisis Lifeline https://988lifeline.org that you can call or text at 988 any time for immediate help. Please call them if you are feeling threatened by your feelings of self-harm.

kelli1989, what are activities that you enjoy doing? What helps you when you start feeling sorry for yourself?

We stand with you Kelli! Just know you are not alone. It can feel like it at times, but you have to stand firm, not give into what you can't do and focus on what you can do. I'm going to start volunteering at a local hospital. Unfortunately it's not like Mayo, but the needs of people are just the same. Also remember you now have a unique perspective to help other people. You are a champion and you are not going to give up! We are all in this together.

It's very nice to hear that others feel this way too. That i can relate. ❤️ thank you so much.

@kelli1989 You are not alone. I am sure all of us feel this way at some point, but you are still here. I will share this with you because I so understand your feeling, and want you to know that you are not alone. I have had seizures since I was very young, and I was put on a medication that controlled them for over 30 years. I felt amazing, I could drive, and I always tried to be very thankful so that, I never took for granted being able to fo those things. Always remembered my medication, rest, eat healthy. I had a great job, and then I was attacked and suffered severe brain trauma. The headaches started, uncontrollable pain, people at work saying I was faking it. Then I had a tonic clonic seizure at work that lasted over 10 minutes. I almost died. The doctors said, you should be dead. I lived, just like you, just like many others. My point is, sometimes life is unpredictable, and hard, and very painful, but we never give up. All of us that experience this are fighters, we are tough, and resilient. Never give up. I realize that its difficult, exhausting and hard. I had to start over, and yes, its difficult, but you will get through. And thise people arent friends, I experienced that to, when you are sick nobody wants to be around that, those arent real friends. Real friends will stay no matter what the weather. Sometimes the few are mightier than the many. Dont give up! Thats what these forums are here for, because there are so many of us that walk in those shoes everyday, that know exactly how you feel. I send you all the love and light to beam happiness and health! You are a fighter!

@kelli1989 I thought about you this morning and what you are going through and as @closetmonster93 said we are in this together. You are NOT alone. As a recent graduate of the Mayo PRC program in Jacksonville, I have to share it was one of the most impactful programs of my life. It made me stop and realize that as long as I have breath I have possibility. This program made me pivoted my entire career to AI in healthcare, I saw that I could smile and laugh again, and I had hope . The program focused on just a few key areas: stay physically active (stretch daily, moderate cardio like walking fast, and basic PT exercises), socialize (get outside your own head) even if that means just going out to the store, and lastly focus on daily small wins. Some days this might mean just getting out of bed, or taking a five minute walk outside, or just doing one basic stretch of twisting your body side to side. Just every single day achieve one small thing. If you do that it is a success day. Remember, you can't control your seizures. If you feel something coming just be safe and realize you can't stop it from happening so just let it happen. No big deal. Move on with your life. Epilepsy is just a diagnosis, it's not your identity.

It's okay to feel sorry for yourself so long as you remember life will get better as time goes on. I was diagnosed with epiepsy about 20 years ago; the effects drove me into a deep depression. I couldn't drive for several years, fortunately my doctors didn't pull my license. They made me sign a statement acknowledging I was told not to drive and doing so is illegal. They also informed me they would pull my license if they saw me driving.

I had a very close friend who was dying of cancer, he was given 18 months to live. He never appeared to be depressed about it. One day I asked him how stayed so positive. He told me he had two options (1) lay around feeling sorry for himself or (2) make the best of it and enjoy whatever time he had left.

That's when I realized I had to change my focus. My wife would tell me she's sorry I can't drive myself to the store. I'd tell her don't feel sorry for me; I get to rest when you must drive.

There's nothing I can do to stop a seizure once it starts. The people I care about the most know that it's the disease and not who I am. It scares people who follow up with words of sympathy. I laugh and tell them don't feel sorry for me, I don't remember any of it. I feel sorry for you because you were so scared that you almost pooped your pants. Everyone knows I'm not being honest, but everyone laughs and we move on.

Please understand I know my life isn't perfect and I'm really down some days. Writing on this site is a big help.

I go to bed every night reminding myself tomorrow is an opportunity for my best day ever and every morning I tell myself it's my opportunity for my best day ever. It's corny, but it reminds of all the good things the day will bring. There are people worse off than me.

Stay positive, things will get better.

Good Morning @kelli1989
As many here in this supportive community have already expressed, you are definitely not alone in your epilepsy journey.
I have lived with temporal lobe epilepsy since my teenage years, but I wasn't diagnosed until 2019 at age 48, when my condition worsened. The first two years of treatment were incredibly challenging and difficult. I had to leave the job I loved and became dependent on others, feeling unwell most of the time. My physical and mental health deteriorated to the point where I experienced suicidal thoughts—something I could barely admit to myself. Please know that having these feelings is nothing to be ashamed of. With my husband's incredible support, I found the strength to persevere and seek help.
I share here the main approaches that helped me move forward:
Neuropsychological or Psychological Support: The guidance from my neuropsychologist was essential to rebuilding my strength. Accepting a lifelong condition requires effort and adaptation—something we worked on extensively during those difficult early years. As @dannoyes wisely said, epilepsy is just one aspect of who we are.
Specialized Treatment: Finding the right medical support makes all the difference. During those first two years, I saw numerous neurologists and psychiatrists, but many treatments seemed to cause more harm than good. When I finally connected with an epileptologist (thanks to another member of this community), my condition improved dramatically, I got much better, and could stand up again.
Building New Connections: After my diagnosis, I initially felt ashamed and isolated. As I gradually regained confidence, I began opening up about my condition. Some people distanced themselves—something my neuropsychologist had prepared me for—but I discovered new, supportive communities. This Mayo Clinic epilepsy group has been invaluable, connecting me with understanding people who face similar challenges. I have also found an amazing community through yoga, besides meeting nice and understanding people at my Pilates, and tennis. Additionally, since my mother has Alzheimer's, I joined a wonderful family support group. These new connections have shown me that I am not the only one with struggles and that we can grow stronger together.
Lifestyle Adaptations: Smiling again required adjusting to my new reality. Losing driving privileges initially felt like losing my independence, making me reliant on my husband for transportation. Gradually, I discovered alternative ways to maintain my freedom—walking, using Uber, or public transportation. I must say that I am fortunate to live in a neighborhood with so many facilities around me. People at places I regularly visit know about my condition, which provides peace of mind. I wear a medical alert bracelet with crucial information, giving me confidence to venture out independently. I have also developed strategies to manage my memory issues. But most of all, I have learned to respect my body.
Have you had support from a psychologist or neuropsychologist? If not, I strongly encourage you to consider it.
Regarding Stevens-Johnson syndrome, I have done some research and learned it is primarily associated with certain anticonvulsant medications. Lamotrigine, carbamazepine, oxcarbazepine, phenytoin, and phenobarbital carry higher risks for developing this condition. Have you taken any of those AEDs? Are you currently on an AED together with your VNS?
I would love to hear from others in our group about what has helped them better manage epilepsy and improve their quality of life.
And to end, one of my yoga teachers always says: You can get discouraged, but never give up!
Wishing you strength and healing!!!
Chris (@santosha)

Hi @tonyde
I loved when you shared what your friend with cancer told you! "He told me he had two options: (1) lay around feeling sorry for himself or (2) make the best of it and enjoy whatever time he had left." This is very true!!
Following this way of thinking, there is an inspiring movie called "Srikanth," which I have already shared in other posts. Based on a true story, it beautifully portrays the journey of Srikanth Bolla, a visually impaired entrepreneur who overcame tremendous obstacles.
https://www.imdb.com/pt/title/tt23790740/