FAQs

Side Note: answers to the following questions are my own answers based upon my own experiences with epilepsy. I try to answer the questions as best as I can while trying to give other possible answers and making it clear that I’m answering based on my own experiences. I hope I answer questions enough but I can’t answer on behalf of others. These answers are associated myself and nobody else. Please be aware that some questions are deemed offensive by some people with epilepsy so be cautious when asking. Any questions that have an asterisk (*) are one’s that either I feel uncomfortable/offended when asked or I know are deemed offensive by others.-

  • Are you going to be okay here at [event name]? It has flashing lights.
    • I personally am yet to have a seizure triggered by flashing lights, that we know of, but I do tend to feel unwell and nauseous from flashing lights. I take myself away from the situation the moment I start to feel even slightly less than 100% and this could be why it hasn’t triggered a seizure yet or it could just not be a trigger for me. Yes there is a risk in me going to events such as concerts due to their flashing lights however everybody’s experience with epilepsy is different so, for those with epilepsy, I do not recommend going to a concert that will have flashing lights before first weighing up the possible risk factors for your own situation, discussing with a medical professional and creating a safety plan in case of an emergency.

 

  • What are your triggers?
    • I don’t have any specific triggers that I am aware of yet. Some people have many triggers, some have one trigger, some have none, some know their triggers straight away, some learn what their triggers are throughout life and some never know. I currently have none that I know of.

 

  • Do you get any warning that you’re going to have a seizure?
    • That ‘warning’ is called an ‘aura’ and much like triggers, some people have one and some people don’t. I occasionally get a gut feeling that I need to sit down but I don’t have an aura specifically and I don’t usually get that gut feeling.

 

  • *What does it feel like when you have a seizure?*
    • Most of the time I’m fully unconscious during the seizure meaning I don’t feel or think of anything in that very moment but when I initially wake up after the seizure I usually feel very scared, confused and disoriented. Sometimes, although I still can’t see, speak or have any control, I can hear what’s going on around me during the seizure. When I have a seizure where I can hear what’s happening, I may not be thinking of anything in particular but, I feel extremely scared and panicked/worried for my safety.
      • Side note: it’s recommended that you stay as calm as possible and talk to the person during their seizure in case they can hear you.

 

If you have a question that isn’t answered above please feel free to ask me over on @PABlogOfficial@ItBeRenee or leave a comment down below.

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