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?

jusf,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Occipital Neuralgia and other Cranial Neuralgias:
http://neurotalk.psychcentral.com/forum105.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

You're not alone even though you may think so. Seizures are bought on by sound, it used to also be heat and movement. The sound is around 1500Hz so its possible to use an equaliser to cut that range out for TV and Phone. All other beeps and hums in the house have been removed or deadened. Longest seizure 35 hours and most in one day 31. Go stiff as a board, conscious, can communicate with eye blinks. Had a tumour removed near the left front ventricle and was ok for a while but he could not remove all of it and it must have grown back. Outside its necessary to wear ear plugs, Headphones and play equalised music. Dramas are car horns, any beeps, mobile phones, planes, sirens and alarms. The world is a noisey place. Getting stronger/better very slowly but any of the above will still cause a seizure.

Hi AussieDad,

Welcome to the NeuroTalk Support Groups.

Welcome AussieDad.

Welcome AussieDad