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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'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.

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.

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 ❣️

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.

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.

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.

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

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. 🤗

It is good that you recognize what you can and cannot have. Take good care of yourself.

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.

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.

Thank you!

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.

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 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.

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.

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.

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 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.

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.

You are welcome. Please let me know what you think of our other videos and shorts.

De nada. Espero que su hija esté bien y que su tratamiento esté ayudando.

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.

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.

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.

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!

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.

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 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.

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.