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Living long with Epilepsy

Wed, 06/19/2019 - 06:42
Hello to anybody reading this I was first diagnosed with epilepsy aged 7 and am now 20, which is was when I was officially diagnosed with focal epilepsy. and I have serious concerns for what the future holds for me. The positive is that through the past years my seizure rate has decreased significantly but I still have them as well as absences each month. I am fully aware there are people with worse than me but the fact that I still have these is why my work and personal life are affected. As I had these I had no independence through childhood. I would only ever come back home from school, spent no time with friends outside of school and uni. I've had a hard time staying positive despite these facts and I just want to know if anyone has felt the same way, same condition or otherwise and how they saw it through. Surely there is a way?

Comments

Hi Mervir1234, Thank you for

Submitted by Anonymous on Wed, 2019-06-19 - 10:08
Hi Mervir1234, Thank you for sharing your story. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns & https://www.epilepsy.com/article/2018/8/epilepsy-strategies-transitioning-college  It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health  It is common for those living with epilepsy to experience feelings of depression https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health/overview-depression  and anxiety,    https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-advanced/anxiety-disordersThe Wellness Institute:  epilepsy.com/wellness  ,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:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools  Additionally,  there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsyCreate a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects,moods, or other personal experiences, using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Seizure alert device:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org  , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. 

Hi Mervir1234:So at times a

Submitted by Jazz101 on Sun, 2019-06-23 - 16:50
Hi Mervir1234:So at times a lot of what we are dealing with comes down to whether we are willing to take it on as a science project. By that I mean focusing on what you are trying to accomplish while remaining practical that we can't be guaranteed a perfect outcome in every area. As I told my niece and my nephew, a lot in life isn't quite as smooth as we would prefer it to be. It's like a card game sometimes. Sometimes we'll win and at times we won't. But what's important is understanding that this premise applies to everybody, Epilepsy or no Epilepsy. By the way, I am the one with Epilepsy. One of the biggest challenges with Epilepsy, besides the medication, maybe the side effects, and just the seizures, is how critical we are of ourselves. One of the things I realized very early in life is that I can't focus on others who know nothing about this neurological condition. In essence, I can't allow others to govern how I see myself. And I have examples after examples that I am so grateful I never allowed to govern how I see myself. Or, to put it better, "sell myself short."My friend, at the end of the day a lot in life comes down to not allowing others to define you. I can recall the seizure and the side effects of the medication taking a toll on my grades in school. But the one feature it didn't edit was my personality. I am someone who contextualizes things. I had a great professor who was able to help me in that area. When my grades took a dive, we had a lengthy conversation and at one point he said to me; "Have you ever heard of a Harvard C?" By the way, this professor majored in psychology and he really helped me contextualize things.The point he was making is that a lot in life is about perception and association. We give tons of credit to many if we simply hear they went to Harvard. We don't stop to ponder their grades etc. We just lend them the world of credit. Again, our perception creates our own reality perspective, which at times can be totally wrong. With Epilepsy, well, we can easily sell ourselves short because we can get all carried away by how it is perceived by others who have no idea of what it is. Dr. Orrin Devinsky, a very famous neurologist, helped contextualize Epilepsy in an article in the New York Times. He spelt out the medical side of it but reminded readers that "Epilepsy is just another neurological condition." There was also a test done years ago by many at Mayo Clinic about being too protective when it comes to Epilepsy. By the way, Mayo Clinic has been rated number one in neurology and neurosurgery for quite a few years, including this year. Their conclusion was one they should have known years before the outcome. In essence the conclusion is that being too protective of someone who has Epilepsy is not very helpful to the person. In essence, we should not be too protective and too concerned about our diagnosis as long as we are in the hands of a good neurologist. The key word there is "too." After all, we definitely should take it seriously, but not to the point where we allow others to define us. The other thing to remember is that neurology has advanced significantly. As a result, our goal should be to figure out the best way to manage hour seizures. That's a conversation between us and our neurologists, preferably one at a hospital with good ratings in neurology. I have once sought guidance from my neurologist about specialists in other medical areas who can help me manage things. I am a firm believer in science and the medical field. I try to run on facts versus the beliefs of others who may be clueless. If you find you might be anxious about other things given you have Epilepsy, speak with your neurologist about it. He or she may be able to refer you to others who can offer you guidance there. You are 20 so I can totally see where you are coming from. After all, I was once that age; the age where everybody is finding themselves. Just read the article by Robert Powell as he spoke to his sons about the challenge of taking on things. Many famous people had their challenges too. In our case it's managing how we see ourselves and how realistic we are about ups and downs. Here is the piece by Powell.https://www.marketwatch.com/story/an-open-letter-to-my-three-sons-2013-06-07Best Regards

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