Hi I'm new to forums, hoping to find I'm not the only one lol!! For just over 2 years I've been having episodes of what is best described as temporary locked-in syndrome with limb jerks and twitches - last between 30 mins and about 4 hours. Between episodes I have various other symptoms - head pain (usually unilateral), tingling/crawling sensation down head/face/lips/arm/leg on either side, muscle jerks or twitches, brain fog, dizziness, poor balance - waxing and waning to various degrees. I usually have head pain either during or after (or both) having a paralysis episode.
MRI and CT 2yrs ago were normal, and neuro have diagnosed chronic migraine syndrome. I have been on propanalol and nortriptyline (and citalopram for depression) but these episodes are becoming more frequent and GP is now weaning me off the citalopram and nortriptyline prior to starting me on topiramate (other two meds incompatible with it), keeping propanalol as well. Have to say I'm not convinced on the diagnosis and wondered if anyone else had similar experience?