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yumiko

1y ago

Struggling to Find Epilepsy Support

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.

Your answer

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Ash.G

1y ago

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.
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Smash

1y ago

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
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Scarlett.night

1y ago

I used to have PNES
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EliteLexy

1y ago

if you don't mind me asking, are no longer having them? And what helped you, if so?
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Blue001

1y ago

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 ☺️
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Quinniffer

1y ago

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
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yumiko

1y ago

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

1y ago

It's so. Hard
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yumiko

1y ago

are you experiencing something similar
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hydroepilepic21

1y ago

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

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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