CHANGES TO SEIZURES

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I have been taking Lamotrigine for about 2 months now and it has tremendously helped with my nightly seizures which they have about completely stopped. however i have noticed that now if Im going to have one still during sleep I begin to convulse for just a few seconds then its like i freeze for a minute and then its over. where i used to convulse for about 30 to 40 seconds and then go in to the full seizure and be completely unaware and they would last about 3 minutes and i would become confused, exhausted, headache and sometimes get to the point of limb paralysis and unable to speak for up to an hour.

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    sorry a lil late here---so epilepsy in general is "mysterious". I got my diagnosis at age 18 in 2013--i remember this russian dr, brilliant, but she stated:

    "we dont know why seizures happen, what meds will work or wont work, we dont know why meds are effective, etc." basically it was "we know nothing, but a name. we can now go through trial and error to see what meds your seizures will respond to (using the type as somewhat of a guide"

    every neuro visit i learn something else. one thing that was consitent was the EEG. As in, after the med was working, why did i continue to need assessment annually? it was explained that as time goes, seizures can change and what they respond to may change; they can worsen, improve, or become a new variant. So basically these checks were to make sure meds still worked and my epilepsy wasnt evolving.

    I have juvenile mycoclonic seizures (nocturnal) with tonic clonic status (grand mal, daytime). Ironically, complained about twitches/spazzing while asleep to primary. She said it was just RLS. 1 year later had a grand mal, 3 months after a diagnosis and new meds...

    bottomline is therapy efficacy may be the only black and white factor of seizures; they either work or dont. As a result of cognitive impacts they have, its not surprising necessarily that your seizures have been impacted--the significance is that the med isnt working. bottomline: immediately inform your dr. (I take zonegran; bad anxiety, eventually adjusted, immediately controlled seizures). other than meds, evading stressors (dehydration, drinking, etc. helped)....

    so

    1: immediately report changes to neuro

    2: has your neuro performed EEG to confirm med is working? typically they will, and I would expect it would show lack of control/new activity.

    I relate to the confusion and feeling like its give and take--but one type of seizure activity traded for another isnt usually in the realm of a successful treatment.

    I hope you have found a solution at this point! best of luck!

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