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New onset seizures

Hello everyone,

I am 27 years old and have had 2 “seizure” type events over the past 2 weeks.
I’m looking for some reassurance as it feels as though the drs and medical professionals are being dismissive of these events and they have been frightening experiences.

My first one my husband found me on the floor, twitching and jerking and I lost control of my bladder. The paramedics rushed me to A and E as a “first seizure” - however the drs were reluctant to call it a seizure as they hadn't witnessed it. They also said it wasn’t very long (my husband guessed it was about a minute).

After my second one (similar in onset, my husband found me in bed jerking and unconscious with my eyes closed) the doctors again were reluctant to say they were seizures because it was too long (5 minutes). I again lost control of my bladder and but the tip of my tongue. They queried if it was anxiety, as I have generalised anxiety disorder for which I take medication.

They have said I will have to wait for investigation- which may take months. In the meantime we asked if I need to come to the ER after the seizures and the response was “only if you think it helps”.

I’m obviously feeling very lost and worried about all of this. What is the best that I can do to help the wait (in that I want to try to avoid and onsetting of seizures) and what have been your experiences of the process?

  1. I just got out of St. Louis hospital I have 2 kinds of seizures mine are focal and generalized seizures they suck I hat it.have to take 3 meds

    1. how are you feeling? Hoping that you're okay since being discharged from the hospital. We are wishing you all the best and are here for you through this journey with epilepsy. Warmly, Kailah (Team Member)

  2. Hi there! I am so happy your husband is on this journey with you. I suggest seeking out a neurologist so that they can diagnose you with epilepsy. The neurologist will do an EEG (electroencephalograph) or Video EEG (electroencephalograph). The electroencephalograph will monitor your brainwaves to see what happens when you have a seizure.

    Please keep us updated on everything!

    Derra Howard
    Epilepsy Team Member

    1. sounds like seizure I have had

      1. , This sounds like such a scary time for you. I am glad you have a supportive husband but it is disappointing to read that you are being let down by medical providers. Have you looked into seeing a Neurologist that specializes in Seizure Disorders? When I saw my first Neurologist, he scheduled and EEG and an MRI immediately. I waited about two weeks instead of the months you have been told about. I attached a link with my personal experience with with the different types of EEGs. I hope that you find a medical provider that better supports you. Always remember, YOU ARE NOT ALONE. Warmest regards, Gabrielle F (Epilepsy Moderator)https://epilepsydisease.com/living/sleep-deprived-vs-ambulatory-eeg

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