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Can Anyone Share Their Experiences With Non-epileptic Seizures, How Long You've Had Them, And What Has Helped Or Not Helped?
My husband has had non-epileptic seizures since 2002. Nothing really seems to help, other than valium (slightly) and medical marijuana. He was prescribed Neurontin for chronic back pain, and 1 week and 3 days into titrating up, he was in the hospital with what they thought was "status epilepticus" for several days of a 5-day hospital stay. He has had EEGs with no abnormal focus, CT scans, MRIs, and there is never any abnormality other than a subarachnoid cyst in his brain that they say is not… read more
@A MyEpilepsyTeam Member
That’s why I got a Neurostimulator (RNS). It records my seizures 24/7 and I send my doctors the information everyday from home. I had a lot of EEG’s, including a surgery, where I had no seizures. What a waste. The RNS saves my seizures. I can tell you all about it.
My tests were negative for 13 years. Been in 32 comas for seizures. Now they found seizure activity. If he isn't seizing during the EEG it won't show anything. That's all that means. He didn't seize on the EEG . Just saying sometimes it takes years to get an answer
I've been diagnosed with temporal lobe epilepsy by at least 4 neurologists and non-epileptic seizures by 1 neurologist.
I can't offer any help, but I've had non-epileptic seizures along with the epileptic ones for about a year or 2. I would have them periodically until just before Christmas last year when I started getting them nightly, every night, in clusters. ER said they were 'Cluster headaches' (short duration migraines) even though there were no headaches. Neurologist then said they were 'hipnic (sp) headaches) even though there were no headaches and at that time were not limited to night time only but were scattered throughout the day. I was diagnosed with temporal lobe epilepsy also and given keppra-now 2500mgs. per day which have helped some. Still have them periodically along with partial onset and 1 tonic clonic. See an actual Epileptologist next month so maybe I'll get some answers
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I've Been Having This Funny Feeling Going On In My Head All Day For Weeks Now Like Am Just Off Kneel And Not There.
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