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  • About Epilepsy
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    What's New in Epilepsy
    Community Voices


    I'm diagnosed with bipolar depression, savior anxiety, PTSD, and epilepsy. I can't be medicated for my mental health because I'm pregnant. I feel crewed up in the head for needing medication but I'm also scared that my child will have the same illnesses I do. This is my first child and I'm just afraid that I'm not gonna be able to be a good mother because of my illnesses. #BipolarDisorder #PTSD #Anxiety #Depression #Epilepsy

    6 people are talking about this
    Community Voices

    Just can’t hold down a job

    So I lost my job today because I’m unable to do certain things in my job role due to potentially having epilepsy. I don’t know what to do now as I’m pregnant no one will hire me and I don’t feel sick enough to get disability #Depression #Anxiety #Epilepsy

    9 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is Sammigirl. I'm here because I am a mom That recently lost my special needs daughter who is 21 but mentally about three I also have a special needs son that is 27 he has autism my daughter had epilepsy autism to walk-in and lots of other illnesses
    Her name is Samantha we called her Sammy Hence the name Sammigirl
    #MightyTogether #Migraine #Grief #ADHD #Fibromyalgia

    10 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is msrajenkins. I've been diagnosed with epilepsy


    2 people are talking about this
    Community Voices

    Having a difficult evening and past few days…

    Struggling with fears of being inept and always feeling like I’m dropping the ball somewhere. While I also struggle with deepening depression and fear from ptsd I want to talk to a friend or reach out to someone somewhere or even scream but I always remain silent and now I feel more stuck than ever! I can always give great advice to friends and I’d drop everything anytime at a moments notice to help anyone truly but when it comes to be I can not take my own words to heart I offer to others….I feel lost and alone!🥹😢😶

    #PTSD  #Depression  #NotGoodEnough #help #ADHD  #Epilepsy  #Migraine 

    7 people are talking about this
    Community Voices

    2 Steps Forward 6 Steps Backwards

    Do you ever feel like every time you make any progress with your illness/disease you win a little then it knock you so much father back that you will never get back to were you were before?

    So I have FND which means my nerves and brain function abdominally and communicate about as well as toddlers playing the telephone game. Add in a sprinkle of Tourettes Syndrome and Sensory Processeing Disorder, Migraine, Dyskinesia, Dystonia, and we are currently exploring epilepsy. All this results in me being confined to a wheelchair at least 85% of the time and need to be supervised if I am not. Along with eating difficulties, communication problems ect...

    I have to go in for occupational therapy and physical therapy once a year to help me maintain quality of life. Sometimes we add speech or cognitive to spice things up if I need it . All these therapies are great and can act as kinda a filter on how to adapt my life to limitations and give some good ideas on how to make life easier within my limitations my body has placed on me. However it always feels like we make a little progress with them and once I "graduate" out of them (stop making progress usually after a the first 2 months) my body starts to decline again even though I countue to do my home programs (hey I want as much quality of life as I can get I mean I turn 20 in the fall I will take what I can get). This happens with me staring to fall more, my hands start to get weaker, I drop more weight, ect.

    2 steps forward 6 steps back.

    Every time. It seems like I am on this never ending loop of yes some progress. Whap out of no where I get worse ...

    2 steps forward 6 steps back.

    It's like this dance me and my body play. Oh you gonna work to try and get better. Sike now your worse enjoy the new wheels.

    2 steps forward 6 steps back.

    Around and around we continue this dance and we can't seem to figure out why this downward spiral keeps happening. Like I'm not gonna keep fighting for my quality of life but man would I like to stop this dance or at least hit pause for a bit.

    2 steps forward 6 steps back

    It's exhausting. I just moved and my new pcp asked if I had made any progress on getting better and it hit me that no actually I keep getting worse and my symptoms keep getting more debilitating as time goes on. So now we redo all the testing and redo all the things to see if anything has changed...

    2 steps forward 6 steps back.

    Anyway I'm just excused with everything. I'm still gonna try and still gonna give it everything I got which honestly isn't much at this point. Still gonna give it a go. Got to continue this dance in homes that some day it will be 6 steps forward and 2 steps back instead.

    #FunctionalNeurologicalDisorder #ChronicFatigue #ocupationaltherapy #PhysicalTherapy #notmakingprogess

    1 person is talking about this
    Community Voices

    Overthinking and drowning🫠

    So it’s one in the morning, I’m in too much pain to sleep, and now I’m overthinking. It just hit me that not only can I die at any time, but next week my friends and the people I grew up with will be graduating and I won’t be up there with them. Because I had to drop out, take a year off, fail. I know I made this choice last summer and I was upset about it, about the fact I wouldn’t get a prom or a diploma, but God, it just hit me. I’m barely functioning, my parents think I’m not trying enough and my friends are all being successful and travelling for college or moving out or getting better jobs and I can’t even remember to eat on time! I can’t work! I can’t take care of myself! And oh my god, am I failure?
    #Epilepsy #Sudep #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #ChronicIllness #TheDisabledLife #Depression #severeanxiety #Insomnia #MentalHealth #disassociation #Schizophrenia

    16 people are talking about this
    Community Voices


    2 people are talking about this
    Community Voices

    Everyone is different & the smart ones are the ones getting help. Maybe we aren’t the ones with the disabilities. We just talk about it & get help.

    <p>Everyone is different & the smart ones are the ones getting help. Maybe we aren’t the ones with the disabilities. We just talk about it & get help.</p>
    1 person is talking about this
    Community Voices

    Fighting Epilepsy

    #Epilepsy is not just a word it is a way of life, is it the life you want, no.
    Imagine just for a second the way it impacts people lives, knowing that each day could be the day you have a seizure, not knowing how bad that is going to be.

    You are sitting comfortably in your chair wheelchair, bed or elsewhere then you get that intense feeling like your head is about to explode “Aura” and the feeling gets stronger and stronger you are no longer able to communicate, you can do nothing to stop it, you are just a passenger in a truly terrifying journey.

    Then it explodes  your whole body is twisting and contorting you are fighting like hell but is a battle you can’t win, your breathing is effected the tears are running down your face and this only took seconds, you are still unable to speak you are fighting like hell to get your breathing under control.

    It’s over your, you body is wrecked, you just go to bed and hopefully grab a few hours sleep after what I describe as being shaken violently by a grizzly bear, but although you get that rest it is about 48hours before you finally get back to be yourself.

    So what now, well who knows, will this be the day I have another seizure? No one knows, so to me and my beloved wife each day is a surprise, some good, some bad, some horrendous , but I still get up in the morning I still live my life, I can still make a difference in other peoples lives.

    You can’t let fear ruin your life as it is easy to do because #Epilepsy is truly difficult condition to live with, but really you have no choice, you have to, what about treatment well n my case it helps but does not stop the seizures or the severity of them.

    I hope that one day we will be able to predict seizures, this and better drugs is the way forward in treating this disease.

    2 people are talking about this