Avm

Hi everyone. New to this forum. Thank you for letting me join. I am a 29 year old male. My early life was normal. Always had honor roll in school. Great in sports. All star pitcher on New Jersey state team (could have joined pro possibly if I stayed with is. Left handed). Instead I stayed with family business. Anyways once I turned 20 years old I was a young male ready to take on the world and take over my family’s construction company where we are masonry and concrete company. Well one day I woke up in the hospital not knowing how I got there. They found an avm in my brain. It was all new to me and my family. Well surgery was done to block the avm but seizures stayed persistent once a week about if I can remember. Well about a year went by where they had me under control with meds. Now and then I would have a seizure just enough to not have my license. At 24 I was able to be seizure free for 6 months to have license. 25 came around and seizures came in atleast once a week. Then atleast 10 to 15 a day. Where they would know me real well at the local hospital rushing me by ambulance ALL the time. Sometimes helicopters would have to rush me to Jefferson in philly. Finally Jefferson and a team decided on making a surgery a possibility since I tried absolutely every medication for seizures and none worked and having 15 a day was not good always hurting myself and ripping my shoulder out while seizing. They removed my temporal lobe and hippocampus. It’s been about 2 years now. Just trying to find myself again. Takes time after such a dramatic time for 10 years. It’s hard for me to go out and hangout with friends or go do something by myself. Idk if it’s that I don’t feel safe or what but it’s hard. I just want to feel free again like I did before my first ever seizure. I every once in awhile have an aura and a seizure but I have my license back so it’s something I look up to having. Single at 29 I’m starting to see is difficult for a male especially living with epilepsy. Is anyone able to relate? Or have any ideas on how I can feel “free” again and safe to live as an adult. Anyone have any questions I am here to help. Epilepsy sucks. I like how we can stick together with a forum like this to help eachother 

Welcome Randy.  I'm a 53 year old male and I've had epilepsy all my life.  My seizure frequency has never been as frequent as you describe, but like you it's been frequent enough to interfere with driving.  I'm curious, what do you do in your family's construction business?  My family had a sawmill / pallet business where the opportunities to help were plentiful.  But the work with saws, forklift, nailers, and and other machinery did not go well with my neurologists.  Well the law had reason to say no to my driving, but no one could stop me from helping in the mill.  Attempts to hold "safer" jobs failed because employers and doctors did not want to take the chances.  So I still do some sawing and other dangerous activities the my doctors don't like.  But I'me happy.What's been your experience with the concrete business and seizures?Mike

Hi Randy1990, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It's important that you continue to follow-up with your healthcare team discuss your concerns and any changes in seizure frequency, side effects, seizure types, changes in behaviors and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It’s also important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to helpyou live with epilepsy is to find a support network. Learn more about your community support, here: support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns Recovering from epilepsy surgery is a journey.Learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/recovery-and-life-after-surgeryMen living with epilepsy may also experience health concerns that are unique to their gender. Learn about some of the epilepsy related health issues men should be aware of and respond to here: https://www.epilepsy.com/article/2018/6/june-men’s-health-month https://www.epilepsy.com/learn/special-populations/men-and-epilepsyManaging these issues with your epilepsy team can help improve seizure control and your quality of life.  A 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 things to consider for independent living , resources that are available & when help is needed. For additional information and resources regarding managing your epilepsy, please visit: https://www.epilepsy.com/learn/managing-your-epilepsy Review our seizure alert device fact-sheet with your doctor, to see if a seizure alert device is an option for you:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfhttps://www.dannydid.org/  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 Tracking your seizures, recording your medical history, set reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests, record side effects, moods, or other personal experiences, by using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness  ,has many helpful and easy-to-use tips &resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more-here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline