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731d

(sorry this is long) I have had petite mal seizures since i was around 8 but was never diagnosed. it was only after i had my first grand mal seizure at 16 that i got diagnosed with epilepsy. i am almost 21 now and have had probably over 40 grand mal seizures since i was 16. when i was around 15 i started having symptoms of depression and going through the pain and struggles of epilepsy made it 10x worse. i feel that from the ages of 16-20 i might have gained ptsd from the trauma i went through but i don’t want to self diagnose. even though lights don’t trigger my seizures, when lights flash i need to cover my eyes because i get scared. i can’t watch anything that is related to epilepsy, especially if they show someone having a seizure. when i see people stumbling over their words or their face twitching for any reason, i go into panic mode and need to get out of that situation. can anyone give me any input on the matter?

Top reply
    • mia_thermopolis

      730d

      i’m not sure how helpful it is to say this, but give yourself grace. your body has been through a lot! your brain has been through a lot. unfortunately, depression, anxiety, and ptsd often come with epilepsy. so remember you’re never alone! i find that yoga and stretching really help me to clear my head. i think using my body for something i love, like yoga & dancing, helps me to reclaim my body. epilepsy doesn’t own me and i don’t want to associate my body solely with pain… idk if this helps, but i want to reiterate that you’re not alone <3

    • mia_thermopolis

      730d

      i’m not sure how helpful it is to say this, but give yourself grace. your body has been through a lot! your brain has been through a lot. unfortunately, depression, anxiety, and ptsd often come with epilepsy. so remember you’re never alone! i find that yoga and stretching really help me to clear my head. i think using my body for something i love, like yoga & dancing, helps me to reclaim my body. epilepsy doesn’t own me and i don’t want to associate my body solely with pain… idk if this helps, but i want to reiterate that you’re not alone <3

      • signature_sauce

        730d

        @mia_thermopolis i did ballet, tap, and jazz dancing for 15 years and most of the time i loved it. sadly my dance academy stops when you graduate high school

    • kennys25

      731d

      I am pretty sure I had smaller seizures before i even knew what they were exactly. I used to drop stuff all of the time and by drop i mean whatever it was would fly out of my hand. I didn’t realize until like maybe a year ago that it was probably seizures way back before I had my grand mals. I can’t imagine how hard it must be on you to have had that many grand mal seizures. they take away all of your energy make all of your muscles ache, you are incredibly strong. I could see the possibility of having PTSD from them they’re scary asf and same with watching people with epilepsy or seizures seizing in a video, I can’t watch those either they give me anxiety & most of the time I end up crying. I work in a nursing home so I have dealt with panic mode first hand just because you’ve seen it and experienced it the involuntary twitching and stumbling over words and it’s not easy to distinguish that from a seizure and old age. I’m always looking for it though because I don’t think enough people or caregivers are 100% aware of what one is or looks like. I just want you to know you’re not alone. I feel your pain and your anxiousness around the topics you discussed. If you ever need anyone to talk to message me on here please!! I’ll always listen!

      • signature_sauce

        730d

        @kennys25 thank you for the kind words ❤️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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