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Really been struggling since all this started

Sun, 11/17/2019 - 23:42
I guess this is my rant or ill say just a release my life has been hard since all of this a little of my history, I had 1 episode in my living room in 2016 where I collapsed bit the tip of my tongue. I still heard everyone just couldn't move I wasn't shaking or anything every test they ran on me has been normal I have a history of sleep-walking only 2 episodes MRI-2, EEG-4, Cat Scan-1, I've had 5 EKG's so far 4 chest X Rays all have been normal they ran every blood test possible on me I even did a B12 test it was normal they even ran 3 HIV test on me weird even an Ethyl Alcohol test to see if I was drunk I never drank in my life I was a bit upset and denied the VEEG I know I shouldn't have but at the time I was very angry because every test I've taken has been normal yet they still refused to look at maybe its the medication. In 2016 I had 11 seizures even one on Christmas in 2017 I had 5 one on Christmas also that year in 2018 I only had 3 but this year I've had 5. But I guess they know more than me but sometimes I feel like maybe the medication started all of this after one episode I was placed in the hospital and put on Dilantin for a week she said she did it as a precaution and since I had a history of sleep walking after that they put me on Keppra (Levetiracetam) 250mg for 30 days and was told take the Keppra for 30 days then stop if I have a seizure I have Epilepsy and will be on the medication for the rest my life. Now since I denied the VEEG I feel the doctor is using it against me he refuse to schedule me a new one I guess its a punch in my face for denying it since im on medicaid its almost impossible to find another neurologist sure the Keppra is free on it but try finding a doctor on it I just feel so stuck sometimes. I cant work because I never know when im going to have an episode I feel so weird every single day I never feel like myself sometimes I wish I never accepted to start on any of that medication. I was on 3,000mg of Keppra when my seizure was at 11 and when I got them to start the lower the Keppra is when the seizures started to slow down and spaced out I'm down to 750mg now Extended Release feeling like a zombie everyday. I've been on Dilantin, Tegretol ,Depakene and Keppra I guess im really making this post because its starting to feel like I cant read sometimes I read things wrong and my personality has change the things I use to love its like I cant stand things I use to love I hate


Hi, Thank you for posting, it

Submitted by Anonymous on Mon, 2019-11-18 - 09:45
Hi, Thank you for posting, it sounds like you’ve been through a lot. Treatment varies for each individual, so it’s very important that you’re following- up with your healthcare team to determine what individual treatment plan is best for you and if you continue to experience any changes side effects, symptoms, seizure types, frequency and behaviors.The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications you take, please visit: open and honest with your doctor about side effects and how they affect your health and daily life. If you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions or assistance finding a specialist near you, please visit : Or contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000,, , where a trained information specialist can connect you to resources, provide referrals and additional support.One of the most important things to help you live with epilepsy is to find a support network. It can be helpful to connect with other individuals who may have similar experiences,to ask questions and to find & give support to each other.  Learn more about your community support resources, here: is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:   The Wellness Institute:   ,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:

Hi, I felt the prescription

Submitted by kimbaloca on Sat, 2019-11-23 - 22:01
Hi, I felt the prescription medication the neurologist had me on was making me worse too. I was diagnosed at 14. Took meds for 10 years. Topamax, Zonegran, Lamictal, Lexapro etc. Tried several different ones, all had terrible side effects. It got so bad i was suicidal, having myoclonic seizures multiple times a day. I came off my meds. I talked to my doctor and found out how to do so safely. It took me about 6 months to come off 1000 mg of Zonegran/day. I did have a tonic clonic event after the last dose was taken. This process was terrifying, I cried the night before I started weaning off them.  Had no idea what would happen to me. My doctor was definitely not supportive and acted like i was crazy for wanting to stop. Well, it's 5 years later. I have about 4 tonic clonic events a year. I am not depressed, I feel content and mostly happy. Depressive episodes have decreased in duration and frequency. I currently take cannabis, CBD oil, and other Plant Medicines. Not saying this path is for everyone, but I think people need to know there are other ways of approaching epilepsy. And the importance of doing it in a safe and healthy way. YOU are in control of your life and your health. I know it doesn't feel like it sometimes, but I believe this is the truth. May you find peace. 

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