Community Forum Archive

A walking contradiction.

Sun, 12/08/2019 - 05:56
To so many out there hiding in the dark because you are to scared to be known as different, to those struggling in it finding a job because they see us liabilities but they won't say it but find a way to brush us off, to those struggling with school, wanting to join sports, feel normal in class instead of always needing extra assistance as if our brain is no longer functional, I want you understand that understand. I have had two types of siezures since I was nine, been through every type of test you could think of, from MRI, to eeg, to cat scans, to x-rays, been on every medication they could possibly give to the point doctors started mix matching them to see if medicine would finally help yet after years going by, my life past me by just from how long I spent in a hospital bed... I got older, then doctors say, "hey we must perform a brain surgery before it starts to get to your memory". Being young I was scared and I agreed when I should have said no, but the crazy part is, after it was done I ended up with a third type of siezure instead of being healed fully... Then find out my triggers are lack of sleep, feeling depressed, and get this, my medication later cause depression, and insomnia... But long ago I was already diagnosed with depression. My whole life is backwards and longer no how to feel because so many judge you but don't understand what they could never know. I try expressing how I feel through music that I listen to but even parents don't see that it's how I feel so I'm forced to walk alone sad, down, emotionless and resentful, I've even seen three chyropractors', gone through acupuncture, near every diet you could think of literally. In the end I'm still putting everyone first but at the same time losing myself...

Comments

Hi,Thank you for sharing your

Submitted by Anonymous on Mon, 2019-12-09 - 09:24
Hi,Thank you for sharing your story, it sounds like you’ve been through a lot.  Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we are here to help support you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns Learn about 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 Or contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline    Treatment and how your body may react to certain medications varies for each individual. To learn more about the medications you’re taking and about seizure medication side effects,please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects  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 those living with epilepsy to experience feelings of depression.It’s important that you’re addressing those challenges with your healthcare team, as well as any changes in changes in seizure types, frequency, behaviors,sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy  It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   It can be challenging to find a healthcare team that you’re comfortable with, so it's important that you’re able to advocate for yourself. If you can’t talk openly with your healthcare team about your health and daily life, or you feel that 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 please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist 

Hey, I’m Maddie. I’m an

Submitted by MaddiePiano on Tue, 2019-12-17 - 20:14
Hey, I’m Maddie. I’m an upperclassman in high school. My Epilepsy isn’t as severe as yours, but I get it. I have controlled GTCs, partial seizures, and daily small ones. I’ve gone through so many medications I can’t keep track, MRIs, PET scans, and Epilepsy Monitoring Units. I wish I could have a job, but I can’t drive so it really sucks. I see my friends having fun singing in their cars driving off and I just wait for my mom to pick me up. I’m looking for someone to understand me too. My parents support me and everything but they’ll never know the embarrassment of screaming out in the middle of class or not being able to take care of themselves (I go unconscious sometimes). And my friends try to help, but all I feel is their pity. Sometimes I feel so isolated I want to scream. I try so hard to be optimistic and not worry people, but in the end I end up crying alone at least once every two weeks. I understand you too. 

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