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Tonic Clonic changed to Status Elipticus
Sun, 03/15/2020 - 20:36Apologize for the long read, I just need to put this out there. I'm taking lamotregene to "control" my seizures. The hardest part has always been the side effects of the medication, drowsiness, insomnia, lack of appetite and nausea. Kepra worked better but the rage was too much for me. I had Tonic Clonic seizures for most of my early life, after I turned 19 I had my 1st Status Elipticus episode, and it lasted 4 days, completely resistant to medication. For 5 years after that I had been led to believe the seizures I had a few times a year were Tonic Clonic, but it turns out my family just didn't know the difference. I had been having short Status Elipticus seizures all this time. I learned this 2 weeks before I was leaving to live alone, despite everyone's concern for my safety. For years I've been acutely aware that all it takes is hitting the ground the wrong way to cripple or end my life. I'm aware of my mortality and fully expect epilepsy to cut my life short some day, but I've lived alone a year now with only 1 seizure. My epilepsy constantly stresses me out, but I at least know I don't need to rely on others to live. I didn't realize how little people understand about epilepsy and how much it would restrict my dating pool. I just wish life was a little more straight forward, work would be easier, dating would be easier, life would be easier. It's like I'm being penalized for my epilepsy but no one has the courage to say what the mean, certainly not to your face. Honestly it's insulting.
Hi, Thank you for posting, it
Submitted by Anonymous on Mon, 2020-03-16 - 09:35
Hi, Thank you for posting, it sounds like you’ve been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone, but it’s important to remember that you are not alone, and we are here to help support you. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. The Epilepsy Foundation has many resources available that can help you find your support network. Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. Additionally, you may want to consider participating in treatment, seizure and lifestyle management programs, that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . Treatment and how the body may react to certain medications varies for each individual. 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. It is common for some people living with epilepsy to report experiencing feelings of anxiety. It’s important that you’re continuing to address these challenges with your healthcare team who can work with you to help determine what individual treatment plan is best for you. Be open and honest about how you’re feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . We understand that talking about SUDEP is tough and can feel scary. Discussing ways to lower risk for SUDEP with your healthcare team can help you take actions to stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep .There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor’s, whocan help determine if an alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf .You may also want to consider keeping a journal or a diary to help track your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, develop seizure response plans, and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary