outpickingdandelions

10d

Does anyone else with dysautonomia get seizures?

I've had them for a few months now and they aren't presenting like epilepsy (have an EEG scheduled in a month), and I'm not sure what could be going on. Psychogenic seizures were discussed but I'm also having some other strange neuro symptoms.

Disorder of Autonomic Nervous System

Pseudoseizures

Postural Orthostatic Tachycardia Syndrome (POTS)

Recurrent Syncope

Syncope

Electroencephalogram

View all
  • Campfire_Crackles

    10d

    Oh wow have I gone through a multitude of tests and neurology appointments! When I first got very sick, I kept having what I called “drop attacks” when I would collapse and shake. They thought I had epilepsy for the longest time, but said I had PNES. “You’re just too stressed!” Now that my life has somewhat stabilized, I haven’t collapsed in over 80 days. It really is a matter of managing seemingly small stressors that eat away at your mind if you allow them to pile up. Message me for more info if interested. You got this!

  • Flightlessbird

    10d

    Really look into the psychogenic diagnoses. I was diagnosed with that and told "if you just accept it, it will go away" Turns out I have severe cervical instability which is causing a movement disorder called paroxysmal kinesigenic dyskinesia. It appears as episodic seizures but doesn't show up on any EEG scans.

    • outpickingdandelions

      10d

      Because I have all these neuropsychiatric symptoms I'm pushing to get tested for basal ganglia encephalopathy, but first I'm going to see how the EEG turns out.

    • LIGHTINTHEDARK

      10d

      May I ask if you can message me? I have a few questions

  • LIGHTINTHEDARK

    10d

    I’m going through the same exact thing and have been desperately looking for answers for 10 years now. It’s so confusing and so painful! I hope you find relief soon because it’s extremely difficult to deal with 🥺❤️

  • tallgirl22

    10d

    I’ve dealt with similar but mine present as absent seizures and do not show up on EEG. It has been assumed they are from BP drops and lapses in consciousness. I’ve seen a few people with POTS who also have “convulsive syncope”. Im no sure if this may be what you are experiencing but may be worth looking into and asking doctors about.

    • outpickingdandelions

      1d

      Thanks for the info! I don't think convulsive syncope matches my symptoms because I am typically conscious and partially aware of what happens.

  • lillia

    6d

    yes I had a non epileptic seizure last November. They can be very scary but make sure you let your doctor know! Mine told me it was normal, but helped to know what to do and how to tell them apart from fainting.

  • royalty

    6d

    Going through the same exact thing and am pushing for a PANS/PANDAS test because of all my other neuropsychiatric symptoms

  • kateafranklin

    5d

    Yes

    • kateafranklin

      5d

      But I do not have epilepsy. I have psychogenic nobepileptic seizures as a manifestation of functional neurological disorder

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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