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Confused

Hi…I’m new here. I’m diagnosed with intractable epilepsy by MRI and symptoms. Lately my seizures have been getting worse. I am aware for all of them no matter which type I have. But lately it’s like someone flips a switch and I get completely disoriented. The aura comes first. Then I go into the stare for a minute or so. After that my whole body stiffens and I lean to the right. Then I start convulsing. I have an app to log my seizures but it’s just frustrating because I don’t know the name of the seizure to log! So I just put either convulsive or non convulsive. Does anyone know of an app that I can put in more details of the seizures? Thanks! 🧠👊💜

  1. Thank you for the reply and the information! It was really helpful! I see my neurologist November 30th and plan on asking what type of seizure she thinks it is. I’m gonna download that app and try it. I just want to be able to keep track of all the different things that happen during the seizure. Thanks again 🧠💜

    1. , welcome to the community! We are so glad that you've found us. I am so sorry to that lately your seizures have been getting worst, this cannot be easy. Please know this community is here for you 💜. Have you spoken with your neurologist or epileptologist about your seizure type? They should be a great resource to give you more information.

      I found a few articles on our site that you might find helpful:
      https://epilepsydisease.com/seizure-types
      https://epilepsydisease.com/living/seizure-types-differences
      https://epilepsydisease.com/healthcare-team
      https://epilepsydisease.com/living/care-team

      I have found a seizure app, who we are not affiliated with that you may find helpful:
      https://www.epsyhealth.com/

      Additionally, if you'd like to share more of your story with the community, I would encourage you to share your story today! https://epilepsydisease.com/stories/new

      Wishing you all the best, Kailah (Epilepsy Team Member).

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