CURE Epilepsy is the leading nongovernmental funder of research in epilepsy. The organization was founded by Susan Axelrod and a small group of parents of children with epilepsy and has since raised over $85 million to fund grants for young and established investigators.
I was first made aware of Sudep by the paramedic who attended to my son. We have not been bereaved but are aware of the possibility. We don't live in fear but are thankful for every day we have him. We appreciate this awareness and send condolences to all in this video all the way from the UK.🇬🇧 God bless you all. Xx
I want to see an update. I'm curious how covid affected this and the nurse coming. I want to see her today. I wrote this before the end played. I'm so sorry :(
Hi Matthew. Thanks for sharing. Ppl have told me I’ve had seizures since very young but got worse as I approached 70. I’m an active 70 yo female that has only had absence seizures (especially brought on by driving or movie theaters). So badly the neuro implanted a VNS with a magnet on my wrist to try to control them. On zonisomide lamectal and Xanax to calm my brain. Eegs all time. Never normal. Ppl stay away from me. But my IQ is high. My kids are grown. I’m “nice “ lol. The word epilepsy scares ppl I’m a widow now. But always researching SUDEP. Anyway , thought I’d share a short story with you. I was horribly judged in my day. But did go on to get my M.Ed bc I hated seeing with epilepsy get bullied
I have epilepsy, I keep forgetting things too quickly that relates to my studies and there are many more things I forgot too quickly. I asked my doctor if epilepsy cause any memory problems but they said ‘No doesn’t cause any memory problems” and now I’m confused. Because I keep forgetting things I’m worried that I might fail my exams because I’m having hard time remembering things 😢
I'm 73 and my absence came back and now I'm med resistant... I have around 100 seizures a day and require home care.. can you address this issue for others to learn and understand more... including myself.
What makes me med resistant.... I have numerous absence seizures a day... usually around a hundred or more. I now have home health care because of memory problems
That’s a good question for a qualified medical professional. Since CURE Epilepsy’s mission is focused on funding breakthrough epilepsy research, we do not have clinical health professionals on staff to provide individual medical advice. If you need to find a doctor or epilepsy specialist, the American Epilepsy Society has a resource to help you find epilepsy specialists that are closest to you here: my.aesnet.org/FindaDoctor
Hi I am new here and recently was diagnosed with having seizures. I dont have the Grandmal seizures, but I have the partial seizures. This is an embarrassing question to ask, but does anyone here think that certain sounds can trigger a seizure? Sometimes the feeling of de javu comes on after I hear a certain word, or maybe sound. I cant ever remember what it is after words. Also I might be watching tv, or doing nothing and suddenly a word, not even a word sometimes ( more like a made up word ) will pop into my head and it gives me the feeling that a siezure is going to happen. I know this sounds crazy, but if anyone can relate I would appreciate it greatly.
Hi I am new here and recently was diagnosed with having seizures. I dont have the Grandmal seizures, but I have the partial seizures. This is an embarrassing question to ask, but does anyone here think that certain sounds can trigger a seizure? Sometimes the feeling of de javu comes on after I hear a certain word, or maybe sound. I cant ever remember what it is after words. Also I might be watching tv, or doing nothing and suddenly a word, not even a word sometimes ( more like a made up word ) will pop into my head and it gives me the feeling that a siezure is going to happen. I know this sounds crazy, but if anyone can relate I would appreciate it greatly.
Hi I am new here and recently was diagnosed with having seizures. I dont have the Grandmal seizures, but I have the partial seizures. This is an embarrassing question to ask, but does anyone here think that certain sounds can trigger a seizure? Sometimes the feeling of de javu comes on after I hear a certain word, or maybe sound. I cant ever remember what it is after words. Also I might be watching tv, or doing nothing and suddenly a word, not even a word sometimes ( more like a made up word ) will pop into my head and it gives me the feeling that a siezure is going to happen. I know this sounds crazy, but if anyone can relate I would appreciate it greatly.
Hi I am new here and recently was diagnosed with having seizures. I dont have the Grandmal seizures, but I have the partial seizures. This is an embarrassing question to ask, but does anyone here think that certain sounds can trigger a seizure? Sometimes the feeling of de javu comes on after I hear a certain word, or maybe sound. I cant ever remember what it is after words. Also I might be watching tv, or doing nothing and suddenly a word, not even a word sometimes ( more like a made up word ) will pop into my head and it gives me the feeling that a siezure is going to happen. I know this sounds crazy, but if anyone can relate I would appreciate it greatly.
In my experience triggers differ from person-to-person, but where in the brain the seizure originates and the medications or other treatments you're use do matter. I would think the answer to your question is yes, it's possible, but I would recommend you consult with a neurologist, or even better, an epileptologist
Hi have u done RNS for Ur epilepsy..my son has an epilepsy..his seizures are uncontrollable after using 3 anti epileptic medicines.. looking for a alternative
@@navneetkaurneetu23 I had done all types of ct scan. But I get normal report if I take mdcn then seizure not come if I stoped tkn mdcn then seizure comes again one day I searched about lal lajpat rai mehra clinic I jst blv God will help me then I get treatment treatment there i m 2Years seizure free without mdcn
I first had a seizure when I was twelve, thanks to undiagnosed hydrocephalus, and didn't have another until I was twenty, at which point I was diagnosed with epilepsy. It's such an individualized and diverse condition. I'm always interested in other people's experiences with it. I just ordered your book. 👍
Thank you so much for this video! My husband & I are planning on having a child & we were getting worried due to my epilepsy but this video has calmed me down a lot & I plan to show my husband this video as well!
With my first one as a baby, an inner ear infection, pediatric put me on phenobarbital. I didn't have any more . But no testing was done. We i was 18 i had a grandmal seizure , went to a neurologist ask me i ,wanted to wait until I have another one before being on medications. Oh when i got to hospital with the seizure your pregnant?what 😊, they didn't know i was having focal too, 17 year not knowing
Good afternoon! I have a 12 year old with seizures that "respond" to antibiotics. I've noticed that whenever he catches a cold and he's on antibiotics,seizures just...go away! What does that mean,plz???
Thanks for the information! Can someone with Epilepsy can take NAC supplements and/or Inositol supplements (before known as vitamin B-8)????? I heard both supplements help to block the glucamate receptor helping the brain to stay calm.... Thanks!
My Nephow Elijah Has Epilepsy Seizures and he had passed away last Friday night at 11 39pm he has 2 brothers Tyler Is 5 months old on march 8 2024 Jay Is one years old December 22nd is jays second Birthday he born in 2022 Elijah was born on November 4th 2020 he will be 4 this year yes he dose take that med to help with his Seizures
Thank you so much He was only 3 years old my brother Bj and his wife Nora Gave him a chance at life He could not talk Walk could eat bye mouth he was feed bye a feeding tube
Plot twist: There is still no cure, and doctors still haven't a clue what they're dealing with.
Месяц назад
My wife was diagnosed with epilepsy 2 months ago and has had memory loss every week (sometimes every day) for 4 months. Her brain goes back in time. When she loses her memory she believes she is in a date in the past and all she remembers are just things she experienced up to that date. She goes back in time to 2, 3, 5, 10 years ago, forgetting everything she has experienced since then (daughter, friends, work, marriage, etc.). I am recording everything in as much detail as possible and I cannot find similar cases on the internet or in scientific studies. After a good sleep (night sleep or a sleep of about 1 hour during the day) her memory returns 100%.
Thank you for sharing this with us, you have our deepest sympathies. We hope that you and your wife are able to work with a doctor to find a treatment plan that works for her. Please know that the CURE Epilepsy community is here.
I am getting more panicked after watching this video, especially as I am a university student. I had been worrying for a year over why I cannot remember instructions from my lecturer or communicate verbally with coherence. My neurologist had assured me that my EEG reading and brain scan looked normal after I was formally diagnosed, which made me believe that everything is okay. However, as I come to hear on its impacts on ones short term memory, I am only starting to believe that my condition is critical, especially when I struggle to pay attention and use the wrong words when talking.
We understand your fears and offer our sympathy. Please know that you are not alone. First and foremost, we recommend that you raise your concerns and discuss new treatment options with your physician. If you are interested in seeking additional opinions, the American Epilepsy Society has a great tool to help you find epilepsy specialists: my.aesnet.org/FindaDoctor
When i was a baby i a inner ear infection, and i had grandmal seizures. My mom said that the dr took me off the medicine . When started school and did their tests, they just stuck me in a slow classroom . I wonder if i the focal seizures. Bc i last year i went to a monitor unit and they said that yes i do.
Excellent info¡ I am Epileptic and hypoglucémic and have tried Keto diet several times. But bacause it is so difficult to stay away of sugar/carbs, (like for example at Christmas Time....) l want to know if it is possible to have a seizure when changed to soon from eating Keto diet to eating lots of desserts and carbs??? That happened to me twice and want to know if the seizures can be trigger because of the changing to soon of fuel to the body, from fat to glucose burner??? Thanks! (Sorry for my English l am from Puerto Rico).
