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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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"Sensory Storms" with Tonicclonic convulsions

Discussion in 'Neurological/Neuro-sensory' started by NaxavisDragonLady, Oct 1, 2017.

  1. NaxavisDragonLady


    Does anyone else get sensory storms that trigger tonic clonic convulsions? The ER docs claim I have Psyhcogenic non epileptic seizures because I had spells suring a short eeg but no eleptiform activity. However, in all descriptions of PNES they have given me, my symptoms just DO NOT match up.

    My episodes start with this feeling like my stomach just flipped (like when you drop on a roller coaster), my brain gets fuzzy and off, and I feel like something is bad/not good, but then my eyes roll up, I fall backwards, my back arches, and my whole body starts to shake for 5-10 seconds.

    I am usually mostly concious during them, but I miss some of what is being said or going on around me. The more I have in a row (sometimes 20 or more one right after the other) the less concious I become during and inbetween them.

    I can't stop the movements no matter how much I try, I often hit my hands and head on things that are in the way. I can not talk or respond in any way while they are happening and for anywhere from 30 seconds to 5 minutes afterwards. No crying or screaming afterwards either.

    Once the shaking stops, while I was aware of the shaking, it seems like I slowly become aware again of my body, and it hurts! It takes a while for me to be able to move, and often someone will have to move my head, legs, and arms back into comfotable positions afterwards.

    I have severe migraines and exhaustion afterwards. Sometimes I will have trouble forming words or sounds afterwards once I am able to respond, and/or trouble just even having the energy to speak. I do not lose my bowels or bladder and anti seizure meds don't slow them down very much (not to mention I am apparently allergic to ativan).

    I recently came across notes about the sensory storm thing on hummingbird foundation and about how you can be concious during them and the description from someone else on this site (aura, feeling of dread, feeling like tou are about to lose conciousness, needing to stop all sensory input) sounds exactly right, but it doesn't say if you can have the tonic clonic movements along with it? Anyone know or have their own experience to share?
  2. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Hi NDL,

    I wrote a bit about my own sensory storm type experience on THIS THREAD, in case you would want to check it out. I've since discovered that a fairly strict lower-carbohydrate/higher fat diet helps keep my episodes to a minimum.

    All the Best, Wayne
    NaxavisDragonLady likes this.
  3. pattismith

    pattismith Senior Member

    @NaxavisDragonLady ,

    Seizures can be related to many metabolic conditions, so nobody here can tell you what really happens to you.

    I just want to point the fact that seizure can occur as a brain sign of Mitochondrial disease..

    You can check it in the document I attached in my post in this thread here:

    "Brain symptoms:

    Developmental delays, mental retardation/regression, dementia, seizures (especially atypical or refractory), coma, neuro-psychiatric disturbances, atypical cerebral palsy, myoclonus, movement disorders, ataxia, migraines, strokes"

    In the therapy area of the document, you can find this:


    1. Adequate nutrition
    Adequate calories and nutrition can dramatically improve a patient’s overall clinical state and slow the progression of the illness21.
    Eating smaller meals more regularly and avoidance of fasting, particularly prolonged fasting is also extremely important in optimising mitochondrial function.
    Special diets may benefit some patients, such as high fat diets with restriction of simple carbohydrates, fructose restriction, and/or high complex carbohydrate intake4.
    A ketogenic diet, for example, may be used for intractable seizures and this is not contraindicated in mitochondrial disease, particularly with complex I deficiency.
    However, ketogenic or other high fat diets are not recommended for long-term consumption due to the potential for cardiovascular risks, such as ischaemic heart disease and other atherosclerotic issues34"
  4. NaxavisDragonLady


    Thanks Wayne!
  5. NaxavisDragonLady


    @pattismith thank you!

    That atypical part for the seizures along with the myoclonus, movement disorders, ataxia, and migraines ring true for me. Thanks for the link- I am adding it to my article file to bring my doctor!
    pattismith likes this.

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