Living with Epilepsy

Dr. Sarah Schmitt discusses the ways Epilepsy can impact your life and how to manage the disorder in healthy, meangingful ways.

[@josephmolieri5439]

Really appreciate this talk. Thank you!

[@timmayer7248]

Thank you for this, lots of good information. I had epilepsy as a child (age6-13) and nothing for about 33 years, and now I've had 3 tonic-clonic seizures since 2019. I'm trying to learn more about this to try to avoid the triggers. It's nice talking to others that have experienced this before, it's easy to feel alone with this.

[@daveicc495]

I have had epilepsy since the age of 17!in high school and at that time I was at the top of my class. I was NEVER invited to any party or have any friends. I had planned on becoming an electrical engineer. I went to one of the top engineering colleges in the country but depression took over. I received assistance from the ADA and once I dropped out depression played more of a role in my life than seizures had. My driver’s license was taken away from me but public transportation became more of a benefit than the former because it cost less. I then gained a full time job which I held for over 20 years. I learned to live on my own as a loner and sustain myself. The most difficult thing is the cost of healthcare. With physicians fees, tests, medications, surgical procedures ( VNS) . The deductibles are extremely expensive. My seizures may be pretty much under control however depressive lifestyle due to a lack of friendships and fear of dementia both play a major factor in life now that I am in my mid 50’s.

[@AlishaRivera]

i feel you i cant drive or work it makes me sad because i want to get my liscense and work a full time job and be free from epilepsy its not easy for me or anybody

[@daveicc495]

@@AlishaRivera If you’re in an urban area and have access to public transportation then that can be a plus to get a job. And if you have the Department of Rehabilitation Services ( DORS) you have an even better chance at getting a free education ( DORS helped me out somewhat but I did not take full advantage of it because of the state that I was in.). And the Epilepsy Foundation is a plus also for they will help you with both and getting a job. Take adavange of all what you can get. I didn’t and I spiraled downward both neurologically but mostly psychologically.

[@chaseme9860]

There is not a single source of gainful employment that would agree to any of these accommodations. I would never expect an employer to see any of that as "reasonable".

[@GinaMFlorida]

Very informative. i've had epilepsy for 50 years. i have anxiety, can't sleep, and lots of stress. i had a seizure last week. i find i'm anxious because I don't know when or where I will have my next seizure. Also, my seizure types changed and I had many more after going thru menopause. I can't find any information about the correlation btwn the two. I would love to see some research done on this. I'm probably not the only one experiencing it. This is not the life I want, and unfortunately I have no choice.I can't exercise because my toes in both feet are numb,,,,neuropathy....due to back issues.

[@timjohnson1199]

Yeah, that would be me too. It's a viscous cycle. Anxiety leads to issues and the issues lead to anxiety.

[@nadineshrimpton222]

I am currently having a 24/7 portable EEG as part of a clinical trial which is pretty exciting. I would definitely chat to your doctor about this device because it can help forecast when you will be having seizures. Also there is an app called SEER, completely free, where you can update when you are having secures that I find really helpful. If you're interested, I'm starting to vlog about this clinical trial which you may find interesting. I've started meditation recently which has been really helpful as my trigger was due to PTSD which caused me a lot of anxiety over the years

[@timjohnson1199]

Yeah, sleep is a big issue.

[@Marco-nx5tj]

If a person with epilepsy is allowed to fly a glider they should be allowed to become a pilot it is pure discrimination to not allow me to be a pilot can't the aircraft industry make a system that disabiles the controls on your side if you have a seizure but allows the other pilot to take control like y do they allow people that have the risk of heart attacks become pilots

[@brendonschliebs3839]

Hi we Just know how hard it is when you go for a Job and if you say you have Epilepsy They Say you're knot up to the Work , forces Standards which makes it hard to live And to Apply for jobs becau se 7/10 - You get Knocked Back which is RACISTS..( Should be Given a go in Life )....⚘⚘

[@Marco-nx5tj]

Lol I'm on valproic acid and Adhd pills and i was becoming anorexic when i was subscribed to valproic acid with a adhd pill that is a class 2 drug

[@PrettyVicious]

You spend a lot of time talking about osteoporosis