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Defeating Epilepsy Foundation
United States
เข้าร่วมเมื่อ 25 ธ.ค. 2017
At The Defeating Epilepsy Foundation, our mission is to provide the advocacy and educational resources needed to the epilepsy community and our society. We are a not for profit organization dedicated to removing the stigma associated with epilepsy and help to create opportunities for individuals battling epilepsy. We strongly believe as a nonprofit organization the need to support the community by offering resources that will help people with epilepsy gain access to resources they need and work towards improving their quality of life.
Unlocking the mystery of CDLK5 genetic mutation and its link to epilepsy
Welcome to our Genetic Mutation Series as our founder Natalie Boehm talks about what the CDLK5 gene is, CDLK5 protein, CDLK5 disorder, its history, diagnosis, signs and symptoms, and treatment options.
If you have any further questions, feel free to email us at info@defeatingepilepsy.org.
Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today!
Website: www.defeatingepilepsy.org/
Newsletter Signup: www.defeatingepilepsy.org/newsletter/
Donate: www.paypal.com/donate/?hosted_button_id=ZHKZXA32UWTKS
Make sure to check out our social media!
Instagram: defeatepilepsy
Facebook: defeatepilepsy/
Twitter: defeatepilepsy
LinkedIn: www.linkedin.com/company/66308941/admin/
Do you shop on Amazon? Consider shopping through our link as a portion of your order goes back to our foundation!
Shop through this link: smile.amazon.com/ch/83-4426552
#epilepsy
We have our content in other languages on our other channels. Check them out and subscribe!
Chinese: th-cam.com/channels/qzRF3U3LynQMBxiUUE6cOA.html
French: th-cam.com/channels/yEQF3L7gXMtZiNF2ApwgTw.html
Spanish: th-cam.com/channels/1tl2N1_x_dri0p-Xqrvlxw.html
Arabic: th-cam.com/channels/t7uKiflOJN3Yqs9StfJspQ.html
If you have any further questions, feel free to email us at info@defeatingepilepsy.org.
Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today!
Website: www.defeatingepilepsy.org/
Newsletter Signup: www.defeatingepilepsy.org/newsletter/
Donate: www.paypal.com/donate/?hosted_button_id=ZHKZXA32UWTKS
Make sure to check out our social media!
Instagram: defeatepilepsy
Facebook: defeatepilepsy/
Twitter: defeatepilepsy
LinkedIn: www.linkedin.com/company/66308941/admin/
Do you shop on Amazon? Consider shopping through our link as a portion of your order goes back to our foundation!
Shop through this link: smile.amazon.com/ch/83-4426552
#epilepsy
We have our content in other languages on our other channels. Check them out and subscribe!
Chinese: th-cam.com/channels/qzRF3U3LynQMBxiUUE6cOA.html
French: th-cam.com/channels/yEQF3L7gXMtZiNF2ApwgTw.html
Spanish: th-cam.com/channels/1tl2N1_x_dri0p-Xqrvlxw.html
Arabic: th-cam.com/channels/t7uKiflOJN3Yqs9StfJspQ.html
มุมมอง: 26
วีดีโอ
PNES and Epilepsy: What You Need to Know
มุมมอง 8914 วันที่ผ่านมา
Welcome to our Mental Wellness Series as our founder Natalie Boehm discusses what psychogenic nonepileptic seizures (PNES) are, signs and symptoms, PNES and epilepsy, diagnosis, and treatment options. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today! Website: w...
How Does Social Anxiety Affect Individuals with Epilepsy?
มุมมอง 112หลายเดือนก่อน
Welcome to our Mental Wellness Series as we discuss what social anxiety is, how does it affect someone with epilepsy, diagnosis, symptoms, causes, risk factors, and treatment options. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today! Website: www.defeatingepile...
Clonic Seizures: Here's what you need to know
มุมมอง 100หลายเดือนก่อน
Welcome to our Understanding Epilepsy Series as our founder Natalie Boehm talks about what clonic seizures are, different types of clonic seizures, symptoms, diagnosis, treatment options, and what to do if someone has a clonic seizure. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsl...
Help us make a difference for people with epilepsy! Donate today!
มุมมอง 36หลายเดือนก่อน
Did you know that epilepsy is the fourth most common neurological disorder, yet so many people don't know what epilepsy is? Check out our website today at www.defeatingepilepsy.org to see what we are doing for the epilepsy community and how you can help make a difference. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epile...
Caring for a Newborn From a Doula's Perspective
มุมมอง 29หลายเดือนก่อน
Welcome to our Sexual Wellness Series as our founder, Natalie Boehm, talks about the importance of prioritizing mental health, basic newborn care, professional and community support for mothers and babies, and newborn safety. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and...
Overcoming Challenges: Living with Tuberous Sclerosis Complex
มุมมอง 42หลายเดือนก่อน
Welcome to our Rare Epilepsy Series as our founder Natalie Boehm talks about what tuberous sclerosis complex is, its causes, effects and symptoms, brain related, symptoms, skin related symptoms, changes inside the body, diagnosis, management and treatment, severity, and when to contact your healthcare provider. If you have any further questions, feel free to email us at info@defeatingepilepsy.o...
Kids & Febrile Seizures - What You Need to Know
มุมมอง 78หลายเดือนก่อน
Welcome to our Understanding Epilepsy Series as our founder Natalie Boehm talks about what febrile seizures are, simple vs. complex febrile seizures, causes, risks, what to do if someone is having a febrile seizure, and treatment options. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our ne...
Uncovering the Hidden Pain of PTSD: What You Need to Know
มุมมอง 572 หลายเดือนก่อน
Welcome to our Mental Wellness Series as we discuss what post-traumatic stress disorder is, DSM-V diagnosis requirements, how PTSD is diagnosed, PTSD and epilepsy, symptoms, treatment options, and risks. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today! Website...
How Williams Syndrome and Epilepsy are Linked: Find Out Now!
มุมมอง 892 หลายเดือนก่อน
Welcome to our Neurodivergent Series as our founder Natalie Boehm talks about what Williams Syndrome is, diagnosis, symptoms, risk factors, treatment options, and how Williams Syndrome relates to Epilepsy. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today! Websi...
Epilepsy and Birth Control: What You Need to Know!
มุมมอง 433 หลายเดือนก่อน
Welcome to our Sexual Wellness Series where we will discuss what birth control is, different types of birth control, birth control and anticonvulsants, and how effective different types of birth control are. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today! Web...
Overcoming the Stigma: What Epilepsy Means for Transportation
มุมมอง 663 หลายเดือนก่อน
Welcome to our Living with Epilepsy Series as we discuss what transportation is, procedure in getting a license, the impact of transportation on living, and transportation services for people with epilepsy. If you have any further questions, feel free to email us at info@defeatingepilepsy.org. Learn more about the Defeating Epilepsy Foundation, sign up for our newsletter, and donate today! Webs...
Laser Ablation and Epilepsy: What you need to know!
มุมมอง 1284 หลายเดือนก่อน
Laser Ablation and Epilepsy: What you need to know!
Brain Surgery: Could Temporal Lobe Resection Change Your Life?
มุมมอง 3334 หลายเดือนก่อน
Brain Surgery: Could Temporal Lobe Resection Change Your Life?
Autism Spectrum Disorder: What You Need to Know
มุมมอง 925 หลายเดือนก่อน
Autism Spectrum Disorder: What You Need to Know
Uncovering the Truth About ADHD: What You Need to Know!
มุมมอง 1075 หลายเดือนก่อน
Uncovering the Truth About ADHD: What You Need to Know!
Unlocking the Secrets of Lesionectomy: What You Need to Know!
มุมมอง 1676 หลายเดือนก่อน
Unlocking the Secrets of Lesionectomy: What You Need to Know!
Uncovering the Truth About HIPAA: What You Need to Know
มุมมอง 616 หลายเดือนก่อน
Uncovering the Truth About HIPAA: What You Need to Know
Transgender Care Advances: What Does it Mean for People With Epilepsy?
มุมมอง 697 หลายเดือนก่อน
Transgender Care Advances: What Does it Mean for People With Epilepsy?
What Are Jacksonian Seizures and How Can You Treat Them?
มุมมอง 2.3K7 หลายเดือนก่อน
What Are Jacksonian Seizures and How Can You Treat Them?
What is Imposter Syndrome and How to Beat it!
มุมมอง 1347 หลายเดือนก่อน
What is Imposter Syndrome and How to Beat it!
What you need to know about Frontal Lobe Epilepsy
มุมมอง 1.2K8 หลายเดือนก่อน
What you need to know about Frontal Lobe Epilepsy
How Dyscalculia Affects Your Brain in Surprising Ways
มุมมอง 1028 หลายเดือนก่อน
How Dyscalculia Affects Your Brain in Surprising Ways
Uncovering The Truth Behind Bipolar Disorder: What You Need To Know!
มุมมอง 1349 หลายเดือนก่อน
Uncovering The Truth Behind Bipolar Disorder: What You Need To Know!
Uncovering the Mystery of Topiramate: What You Need to Know!
มุมมอง 1039 หลายเดือนก่อน
Uncovering the Mystery of Topiramate: What You Need to Know!
What Causes Schizophrenia? Your Questions Answered!
มุมมอง 1149 หลายเดือนก่อน
What Causes Schizophrenia? Your Questions Answered!
Unraveling the Mystery of Occipital Lobe Epilepsy: What You Need to Know
มุมมอง 57510 หลายเดือนก่อน
Unraveling the Mystery of Occipital Lobe Epilepsy: What You Need to Know
Annabel Trail
The only thing i noticed is not to eat after i take it. The dizziness is insane!! And i get this crazy feeling in my lips! I cant do nothing but lay down!
My friend who is on it had the same experience when adjusting to it. I've never taken it, but over the years different medications have done the same to me. It is insane. Please take good care of yourself.
I was diagnosed as an adult, but I do not have HH, and it is rare. Since being diagnosed, I have been diagnosed with anxiety and depression. I am never conscious during the gelastic seizure. I come to afraid and confused feeling alone. I am aware of the crying seizure. I often get angry with myself because people watch me cry. I don't like it. Also, my face is now asymmetric after years of these not being controlled by meds. I have a handful of other seizures as well, but these are the ones that stand out and take more time to recover.
I'm sorry you are going through all of this. I have had similar symptoms of being afraid and confused, but I have different types of seizures. Please don't worry about what other people think, I know it's easier said than done, but focus on your wellbeing.
@DefeatingEpilepsyFoundation thank you for acknowledging my comment with kind words.
@@DessD-g8j you are welcome. Please take good care of yourself.
My son is now 21 years old. When he was at 15 months age first got seizures with high fever. Since then up till now he is getting treatment at different doctors including neurologists but no improvement. I observe 3 stages since the first seizures 1. First with fever only for some years 2. Later with or without fever when he was in tension mood 3. Now including above 2 stages getting atonic seizures (falling along) now and then. So now I want to consult neuropsychiatrist for him, is it right decision or not ?. Please give me suggestion and if you feel something else please elaborate me. Thanking you..
I'm so sorry your son is going through all of this. I'm a patient advocate, so I can only advise when it comes to that, I cannot give medical advice. I would find an epileptologist for him to see. They are neurologists who specialize in epilepsy. A lot of them will work in neurology group practices or university medical centers. I found my health greatly improved once working with an epileptologist. In the past, my insurance company sent me to a neurologist who specialized in Parkinson's disease and did not know much about epilepsy. You may have to try a couple of times and file an appeal with the insurance/medical group. They denied me twice and when I showed the medical group, I did see one of their doctors and they couldn't help, they finally gave in. It can be a challenge getting to a specialist due to the insurance. Along with his primary doctor, see if there is a patient liaison (patient advocate) helping at your doctor's office. They can help with the insurance complications and get your son the care he needs. I would start there, and then if you are not having any luck, I would then ask if a neuropsychiatrist would be able to help.
Seizures are not mental or psychological. There is always a physical cause. Saying it's mental and emotional is code for we dont know your physical cause so we blame the patient and emotions. M arr
There are many causes to seizures. Physical damage to the brain gets dismissed as a cause by many docs. M arr
For those who are aware of their clonic seizures when it happens…. It must be alot of pain
I have Epilepsy Seizures and my Doctor said they might do Surgery and I’m scared 😢😨
Caffeine, certain sounds can also trigger them, as it is with me.
I think you forgot to put loud sounds and yelling.
Hello 🎉
How partial seizure feels like
Thank you for the info 😓😔😢i just found out I have this
You're welcome and I am sorry to hear about your diagnosis. If you have any questions, please respond here and I'll do what I can to help.
@@DefeatingEpilepsyFoundation Thank you ❣️
just realising at 21, time to call the doctors tomorrow
I hope everything works out. It can be very difficult to diagnose epilepsy depending on the situation. I hope you are able to get the care you need.
Supplements, name some please 🙏🏾, I take allot of Supplements, not any herbal supplements that i know, but feel free to mention all .
Here is our video on vitamins and epilepsy. Included are the vitamins you should take and what you should avoid: th-cam.com/video/CkAgAVJrrRs/w-d-xo.html
@DefeatingEpilepsyFoundation thanks MUCH APPRECIATED
@@carltonbenjamin5758 you are welcome
@DefeatingEpilepsyFoundation I always thought that Caffeine started my epilepsy. Mine started when I was working lots of years overnight drinking MONSTER energy drinks . I also had the stress of raising 3 kids without much help from there mom also .
@@carltonbenjamin5758 I can see that. One of my friends was drinking Red Bull on a regular basis for some time. Thank goodness he didn't develop seizures, but he has horrible migraines now. It is stressful enough being a parent, but being a single parent to three kids and working like that, I can't imagine what that was like. I'm so sorry you went through all of that.
But then I get a partial seizure and can't sleep which doesn't help and get another seizure from that....
I'm sorry to hear you are dealing with that. I have experienced something similar in the years I have had epilepsy, and it's frustrating.
You just want to escape the ongoing pain...
I can relate, I have had suicidal tendencies on and off since I was 12 due to epilepsy. I have found doing things such as exercise, meditation, art therapy, and gardening help to reduce my depression to prevent being triggered and developing suicidal thoughts. Try to find something that makes you happy. Also a therapist I used to work with helped me create a survival list. I had to put down people I could reach out to, things that made me happy, and my doctor. If I went down the list and nothing helped, then I was to seek help. I wrote it years ago and still use it. It has been a big help.
@@DefeatingEpilepsyFoundation thank you very much
@@TRUMP-2024-UK you are welcome
Hola, gracias por la informacion como se diagnostica mi hijo tiene todos los sintomas y una lesion de un accidente en el lobulo parietal pero los encefalogramas solo a salido muchos artefactos y background desorganizado
Bienvenido y lamento escuchar que su hijo está pasando por esto. También tengo lesiones que causan convulsiones debido a una lesión en la cabeza. Las mías están en el lóbulo frontal. Puede ser muy difícil obtener los resultados necesarios para ayudar a armar un buen plan de atención. Espero que las cosas estén funcionando y que su hijo esté recibiendo la atención que necesita.
@@DefeatingEpilepsyFoundation Gracias, pero a la fecha no esta recibiendo tratamiento todavía 😓. Espero usted si y esté teniendo buenos resultados. 🤗
Let us bring awareness to how MSG in food and other food additives can also trigger episodes. Stay safe y'all.
I have Epilepsy. I have only had 2 seizures in my lifetime
I have seizures regardless of whatever i put into me it helps to limit but i stay away feom alcholic for 200% sure caffeine I'll have once in a blue moon
It is good that you recognize what you can and cannot have. Take good care of yourself.
Interesting
I have these the most out of all my seizures they are interesting
Interesting, I haven't heard of this before. I'll check it out
Mabye, this is why i always did bad at math. i should have got tested for this ... 😅 to late, i guess
Oh and your video is accurate i have experience all of what it says its freaky the first time you experience it
It is freaky the first time you experience it. I use to just blackout and not know what was going on until after the seizure stopped. When I started having the bilateral tonic-clonic, it was really frightening. Thankfully, carbamazepine has helped me to get them under control.
Love these videos i have epilepsy sense i was a kid ive been averaging 32 a day until last fathers day finally got it to 16 a weekish on a good week 🎉 i have 7 out of the 11 we know of dont have the 2 baby seizures types or the ones that make you cry or uncontrollably laugh or lastly the partal seizures that have lip tugging on shirts or chewing motions but i got all the other ones and its fun let me tell ya subscribed thanks cant wait to keep learning thank you!!
I am glad you are enjoying the videos and shorts! I'm also happy to see that your seizure activity is decreasing. I had bilateral tonic-clonic seizures when I was a teenager. I would become frightened and then lose consciousness. I am happy you have subscribed, and please let me know what you think of the other videos!
@DefeatingEpilepsyFoundation thank you 😊 those are scary seizure types for sure as a teen that would be hard to explain to an adult to receive help of what is happening as a young kid I couldn't explain my mom didn't notice or know what I was trying to say until she saw a tonic seizure and I locked up and then a few days later tonic clonic and the fun began
@@Brandon-kp5to you are welcome. It was hard to explain as an adult. I didn't even realize when I got scared, that I was already having a seizure. My parents would tell me to please relax, there's nothing to be scared about. Due to the neurologist not educating them about my seizures, they didn't realize and didn't always take the steps needed until I went into a tonic-clonic and needed to go to the hospital.
Very interesting good video ❤❤❤
Thank you!
Even thoughts could trigger .
I can see that. Even though the medical organizations do not list it as a trigger, when I have thought of very stressful situations in the past, I had some simple partial seizures due to it.
Never developed schizophrenia until my craineotomy in December 24th 2007. The surgeon removed six centimetres of upper right anterior Hippocampus which was causing fall down convulsions. Full dissection of the amygdala which was causing status epilepticus. I started awakening with nocturnal ptsd flashbacks and auditory schizophrenia.
I am so sorry to hear that this happened due to your surgery. I hope that the doctors have been able to do something to get things under control.
I have juvenile myoclonic epilepsy with tonic seizures wish my parents would have learned this stuff when I was a kid
I feel the same way. I have had epilepsy now for 44 years and I had to do my own research to understand what I was dealing with. If I would have had access to this information earlier in life, there are so many things I would have done differently.
I always suffer from social anxiety especially when I'm in crowds I does be afraid if I do or say something people might think I'm being weird when it comes to social anxiety epilepsy has a massive effect on it epilepsy always interfer with everyone's ability to socialize and most of the time I'm always alone because of it
It is still challenging for me to socialize. My career has forced me to learn to better socialize, but it took a lot of work. Epilepsy can cause someone to feel very alone. In my teenage years it was the most challenging.
Canan̈ did anyone tell me what it feels like to have Jacksonian seizures
I personally cannot, because I have never had them. I have had tonic-clonic, bilateral tonic-clonic, complex partial, and simple partial seizures in my lifetime.
i can remember when I use to have those its the worse type of seizures to have especially if you're at a dangerous place people have to make sure there's nothing in the way for that person to get hurt i have bruises on my skin from when I use to have them and I use to be hospitalize a lot they're really scary
They can be very scary. I'm happy to hear you are not having them anymore. When I used to have them, I can't tell you how many times I was injured from falling. It is important to make sure to keep the person having a seizure safe.
I have seizures with no answers other than CAT SCANS😡! I’m on my way to DEMAND further testing on my brain such as a 24 Hour EEG! Pray that I get answers or atleast make progress! ILL BE PRAYING FOR YOU 🫵🏼🙏🏼
I would request one. You can have your doctor request a 72 hour ambulatory EEG. What they do is put the wires on your head and plug them into a device that looks like a box. You go home with it and it records everything. I had one years ago, and It was happy that I was able to be home while it was done. If that is not possible, I would ask to go to the EMU (epilepsy monitoring unit) to have it done.
@@DefeatingEpilepsyFoundation you may have just saved me health wise and time wise I had no clue about this! I will be back to tell you how that went🙏🏼THANK YOU🙏🏼
@@Hunter_Shane You are welcome! Yes, please let me know how things go. I wish you the very best.
No appetite delusional moody restless irrational not for me
I'm glad you were able to get off of it. I have never been on keppra, but I have heard so many negative stories about it, especially when it came to keppra rage. I hope you are now on a better medication and doing well.
Thank you for the info i subcribed.
You are welcome. Please let me know what you think of our other videos and shorts.
I just got released from the hospital. Status epilipticus nearly killed me. My anxiety at the moment is insane.
Buenas tardes gracias por el material mi hija es diagnósticada con epilepsia abdominal le manda ceumid, epitral y biprin si esta bien
De nada. Espero que su hija esté bien y que su tratamiento esté ayudando.
I told my doctor I was having ecstatic seizures. He told me he only gets depressive seizures.
I'm sorry that the doctor didn't listen to you. Please keep a journal of the symptoms you are having. Seek a second opinion if you feel the doctor is not helping you.
Mi mamá tiene 2 meses que empezó con convulsiones focales, el medicamento no le ha ayudado mucho, sigue con crisis. Algo que les haya servido?
Puede ser muy difícil encontrar la combinación correcta de medicamentos para controlar las convulsiones. Los médicos tardaron años en controlar mis convulsiones. Si la medicación no funciona, hay otras opciones disponibles como la nutrición y la cirugía, pero la cirugía es la última opción que se usa cuando fallan múltiples medicamentos.
Thank you so much for this video ❤️..I keep waking up in the hospital or even in jail, but mostly with my face covered in bruises and cuts and my room destroyed with broken glass everywhere. I never remember any thing but my roommates say i do it to myself, i’ve been having seizures for 4 years now and these past two years have been really rough. I think i am dealing with epilepsy/schizophrenia..i never hear voices or anything but i’m always scared..someone’s always watching me and im gonna die at any moment. i know no one’s really there but…idk what’s wrong with me 😢 please help
You are welcome and I am so sorry to hear you are going through this. Has your neurologist helped you get to a psychiatrist? They would be the one who would be able to make an official diagnosis when it comes to schizophrenia. I don't have schizophrenia, but the scared feelings, I used to get in the past when I had bilateral tonic-clonic seizures. The frightening feeling was a focal seizure. I never had the paranoia that someone was watching me or I would die at any moment. I would document all of this and give the doctor the information. The fact that you are regaining consciousness not just in the hospital, but in jail tells me they need to get on this right away. If your current doctor is not helping you, I would seek a second opinion and see what they can do.
@@DefeatingEpilepsyFoundation Thank you so much words can’t even explain how grateful i am for your openness and opinions
@@lemarcussimpson8492 you are welcome. Please take care of yourself, I wish you the very best.
Here's my story of living life with epilepsy if you want to read it. When I was 22, I was an apprentice for a Tile Company, me and my girlfriend at the time had two children, and we were about to get engaged and get married, but right before I got my apprentice license, I had a full tonic clonic seizure (grand-mal). In the hospital they did an MRI, they discovered that I had a cyst in the fourth ventricle of my brain near my cerebellum, they wanted to remove it, but I said no. 5 months later I started having grand-mal seizures again. So I decided to have brain surgery. My girlfriend didn't want to deal with what I was going through, so while I was in the hospital recovering from brain surgery, she went to court and got full custody of my children because I didn't show up for court. What the judge didn't know before granting her full custody of my children though was that I was in the hospital still recovering, I had know idea what was going on. The judge just thought I was a no-show father, so the mother of my two children was rewarded full custody of them. She took our children to a different State and married another man. The only one's that stuck by my side was my Mother an Father. My Mother decided to be my POA because I can't work, nor can I drive to see my doctor's or anything. The meds I take are at the max without causing liver or kidney damage, but I still have grand mals and a lot of petite seizures (auras). I have to take 14 anti-seizure meds a day and here is my list: Every morning I take: 1x Dilantin, 2x Keppra, 3x Lamictal, and the stomach pill I take is called Protonix, it helps my stomach from throwing them all up. Every night I take: 3x Dilantin, 2x Keppra, 3x Lamictal. Since I can't drive to go see my friends, they don't come to see me, so basically I have no friends anymore. 5yrs later while I was struggling to find happiness, I meet another woman, and 1yr into our relationship we had a child, a beautiful baby girl. I was doing good, but unfortunately that was the time my Father passed away. 6yrs into our relationship she decided to leave me for someone else as well because she too couldn't handle having to deal with my disability. This time though, I made sure to go to court and get partial custody of my daughter, because I refused to deal with losing her too. I'm 40yrs old and I've been taking my pills for 18yrs, I have heart issues now and I'm getting old, SUDEP will probably take my life, but I'll continue to see my daughter for as long as I can. I go to her school functions every chance I get, and she comes to visit me every weekend. I make sure to spend as much time with her as I can, and I do my best to keep her happy when she's with me because I know I'm going to be leave this world soon. Eventually my daughter will be all grown up with a family of her own. My two oldest kids don't call me, and when I call them, they don't answer. They've abandoned me which sucks because all I really live for in this life now is for my kids and my Mother. It sure is a bummer living with epilepsy.
greetings ✌ i had LITT surgery in June 2022 due to MTS - mesial temporal sclerosis before this procedure i was having 7 - 30 focal aware seizures (auras) a week for over 7 years after the LITT procedure, the auras have decreased to 2 or 3 a month!! many blessings of health & wellness to you all and may God be with you brothers & sisters 🙏🕊🕊 - Jay, with late adult onset epilepsy since 2012 💚
Jay, it is wonderful to hear how much your auras have decreased! Many blessings and good health to you as well. I apologize for responding so late to your comment. I was visiting my husband's family in Germany, and the internet kept freezing. It was impossible to answer, watch videos, and at times, answer my emails. Keep up the wonderful work, and thank you again for sharing this great news!
Hello. I have had seizures of multiple types for over 30 years. had a VNS for a few years. Treatments include multiple medications, monitoring at an epilepsy facility with depth electrodes, and consideration of a hippocampectomy. I was diagnosed with temporal lobe epilepsy but avoided the surgery due to the impairments it would cause. Recently, my neurologist recommended either a DBS or RNS as treatment options. I have tried to learn about these options but find that the information is repetitive and not very informative. I am not set on additional treatments now; I just need to be informed more thoroughly. I would truly appreciate a guided response. Thank you.
What herbal supplements would cause a seizure?
Can i goback onto keppra afterstopping for 1 month?
You would have to speak to your doctor regarding going on medication and dosage. I am not a doctor, I have epilepsy myself so I cannot give medical advise.
the biggest trigger for my seizures is stress and it doesn’t help when your college gives you tons of assignments and presentations 😞 also my brain gives me really weird experiences on my period. i pray that all of us will get through this and get healed soon 🙏
Stress is a big trigger for me as well. Keeping up with my work when I was in college was challenging at times. I created a study schedule and plan for when I did my assignments. It helped me to keep on track with my studies as well as being able to keep up with my responsibilities outside of school. School is stressful, so try to find ways to reduce stress. Exercise, meditating, yoga, painting, and reading are some of my favorite things to do to relieve stress.
@@DefeatingEpilepsyFoundation thank you so much for your reply. I’ll definitely try to implement these tips! wish you healing and love 💙
@@hopefaraway_ You are welcome! I wish you the very best with your studies 💙
@@DefeatingEpilepsyFoundation thank you!🥰 I pray that you find the strength to overcome any hurdles/hardships life throws at you💙💙
I can't talk to my family cause they react so negatively and say all the unhelpful phrases you pointed out, I can't call hotlaines cause they always say "sorry you have o call this number" after 10 mins of speaking to myself instead of and responds, I've gone to the hospital and waited over 12 hours to get told in about 30 minutes that "you're over reacting, suck it up!", I tell myself all the time that i should just overdose on all my meds, prior to even seeing this video, so I'm not alone who thinks this way
I am sorry that you have these negative experiences with your family and seeking help. I have had similar experiences myself. I would reach out to your primary doctor and see if you can get a referral for a therapist. Right now I'm in therapy and it helps. I can tell you right now you are not overreacting. I have had epilepsy for 44 years now and have been dealing with suicidal tendencies since I was 12. Along with therapy, I exercise and meditate which helps. Music and art therapy are very good at helping reduce depression.
Hi All, I am using oxetol from 9 years..am using this medication 150mg daily at night.. Am free from the seizures from 9 years.. But i have a doubts like, how long can i take this medicine. And fearing to stop, because if i stop, more seizures and frequently may happen. I have asked the doctor what to do. Doctor said, you can use in your lifelong. But i have afraid like..is this medication cause heart,kidneys,lungs(main parts of the body) side effects.. Please clarify my doubts..
I'm not a doctor, but I have had epilepsy for 44 years so I will explain this from a patient perspective. The fact that you have been seizure free for 9 years is amazing. Nothing is guaranteed, but if it is working, I would listen to the doctor and continue. I have been on Carbamazepine for over 20 years and this February marked my 20th anniversary of being seizure free. The medication I am on has the same long-term side effects as well. Your doctor can do blood work to make sure your kidneys and liver are functioning at the levels they should be. I understand the fear of starting to have seizures again. I have had some complications with my health, I was diagnosed with breast cancer last year. The oncologist wanted me to go on a medication that is a hormone blocker, but carbamazepine has a compound that prevents the medication from breaking down. He wanted me to come off my one seizure med and I made it very clear that was not happening. Even after all of these years, I still have the same fear as you do. Please take good care of yourself and please talk to your doctor if something does not feel right or you want to know more about the medication.