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yumiko

358d

I've always found it difficult to find someone to talk to about my epilepsy because I dont have tonic clonic seizures, I dont know anyone else with photosensitive epilepsy with absent and myoclonic seizures.

Top reply
    • Scarlett.night

      296d

      @EliteLexy medication and stress control

    • Ash.G

      338d

      I am not officially diagnosed with seizures yet. But I have reason to speculate that I ether have migraines or some sort of non tonic clonic seizures. Unfortunately I have a hard time with remembering how I should explain them to a doctor. I also done playing my symptoms because I don't want people to think that I'm a hypochondriac or looking for a med to be high on. Also migraines running my family but most people that have them in my family don't get them as often and it lasts longer than mine and have different symptoms.

    • Smash

      348d

      I haven’t got an official diagnosis yet but I’m pretty sure I’m having myoclonic seizures. Just waiting to get into neuro lol

    • Scarlett.night

      354d

      I used to have PNES

      • EliteLexy

        349d

        @Scarlett.night if you don't mind me asking, are no longer having them? And what helped you, if so?

        • Scarlett.night

          296d

          @EliteLexy medication and stress control

        • Scarlett.night

          296d

          @EliteLexy meds I think

    • Blue001

      354d

      I used to have absent seizures. My neurologist thought it was photosensitive. I have really aware when there is a flashing light. Whether it’s just flickering slightly or it’s intense flashing. I can’t help but be fully aware and anxious about it. I have become better with it as time has progressed. I hope you’re okay and just so you know you are not alone. If you ever want to text me, I’m here. I’ve had people use my epilepsy against me to limit me and that should never happen. We are all the same even if we can have our slight differences xx ☺️

    • Quinniffer

      357d

      I have photosensitive absent seizures. It can be really hard. I've never met another person with them and most people don't believe me

      • yumiko

        354d

        @Quinniffer omg really, most people don't believe me either. what do your seizures look like?

    • Aikio

      358d

      It's so. Hard

      • yumiko

        354d

        @Aikio are you experiencing something similar

    • hydroepilepic21

      358d

      I have non of that but I've found support groups on Facebook

☝ 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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