How do you experience seizures? | Lupus Forums at The Lupus Site
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How do you experience seizures?

Discussion in 'Symptoms' started by Ana_5678, May 12, 2019.

  1. Ana_5678

    Ana_5678 New Member

    I don't know how to bring this up to my neurologist. My Lupus seems to be focused on my nervous system and I'm remembering odd symptoms from before I was diagnosed. Searching online gave me no results since apparently all Lupus related seizures make the person lose consciousness.
    Mine were different.
    This is how I used to get them: in my sleep, I became aware something is wrong like I would get woken up by a sudden awareness, then quickly my brain would go in overdrive. I would describe it as all electrical impulses of the brain would fire at once, becoming really painful and intense, 100% brain power cranked to maximum. It felt like electricity engulfing my whole brain and making it painful, like burning to full capacity. I felt my head tilt backwards and all my muscles locked. I can't recall any shaking. I was very much aware of what's going on and can't describe how horrible of an experience that was. It happened a lot, like every night sometimes, but hasn't happened in a few years. It lasted for a minute or so and when it was over I was exhausted and scared and afraid to fall back asleep.
    Were these seizures? I'm afraid my neurologist wouldn't take me seriously, so I'm asking here if anyone has had something similar so I can get a rough idea of what that was.
    Getting an MRI tomorrow morning, btw... finally.
    Lupusdude likes this.
  2. lazylegs

    lazylegs Moderator

    Hi Ana,

    Your neurologist should know because all seizures are not alike. Mine are classed as abnormal partial simple seizures and I am aware the entire time. I don't shake but others are aware it is happening by my body rigidity and the look on my face. They are consider postural as I am always standing and the thigh muscles tighten so I can't move my legs. I scramble to grab onto something around me because when the muscles let go down I go unless I am holding onto something. Afterwards I am exhausted for the rest of the day. The doctors were stumped for a long time but they decided to try seizure meds and it hasn't happened since.

    Good luck with your MRI.

    Take care,
    Lupusdude likes this.
  3. Ana_5678

    Ana_5678 New Member

    Thank you! This brings some light on how different seizures can be.
    I had my MRI thia morning and it was horrible, ten hours after the contrast I'm still sick and my brain hurts. I experienced burning and pain on the back of mt head which I did not expect. I hope I'll recover soon.
    Lupusdude likes this.
  4. lazylegs

    lazylegs Moderator

    Some people do get a reaction from the contrast, I am not one of them. If the symptoms continue you should contact your doctor's office. Hopefully you get some answers soon.

    Take care,
    Lupusdude likes this.
  5. Lupusdude

    Lupusdude Registered

    I've had seizures in the past, but they were the more intense kind that land one in the hospital for 2 weeks with a fatal prognosis. Glad to hear that yours are mild. Apparently they come in all shapes and sizes. Peace.
  6. Kathryn Roberts

    Kathryn Roberts New Member

    I'm so glad you are talking about this on here. I had seizures that I wasn't sure were seizures years ago when I had mono. I was fully aware what was happening, but couldn't control them. I could just feel a tightness in my neck as my head was forced upwards and back (so that I was forced to look at the sky). And my jaw would clamp shut, often times biting my tongue. Thankfully they've never come back.

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