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Non-epileptic Seizures or something else?
Mon, 01/11/2016 - 00:47Topic: Epilepsy.com Help
PLEASE GIVE ME YOUR FEEDBACK! on dec. 12 my husband started having these "episodes" where he would get this small tickle feeling in his stomach area then within seconds would turn into a STRONG VERY PAINFUL punch. So painful his whole left side goes stiff to where he can't control it ....lasting about 10-15 seconds then stop instantly. He doesn't roll eyes back, is aware, can talk ect. Only thing is his body is soo much pain it stiffens up which has causes him to fall a few times. They started in his sleep and now happen day or night. Sometimes every 15-30 mins. This has gone on for 28 days straight all day and night with no stopping. Has tried muscle relaxers, pain meds, antiseizure meds and nothing has even helped a little. Did a 24 hrs video EEG and they say NES. We are desperate to make these stop or even ease up. Do these even sound like NES? (Or look like?,I'll add video). We have had trouble accepting the NES diagnoses bc of the SEVERE PAIN that comes with these episodes. Bc of his state of mind ect he feels like they are more of a very painful Charlie horse in the stomach(always pain in the exact same spot,has had ct scan, MRI and colonoscopy and no signs of any stomach issues). Please give me any feedback or tips you have to help ease these episodes....again were on a month straight EVERY DAY every hour if not more often!!! Is it typical for NES to be PAINFUL like this every single time???
Is the neurologist who did
Submitted by just_joe on Mon, 2016-01-11 - 11:01
Is the neurologist who did the EEG a specialist in epilepsy? If not then the EEG could have been misread. Also understand that a person can have several EEG's that come back normal. Personally I had 20-25 eeg's that came back normal. All of the other tests they did were normal. The last test to be done in a week of tests was another EEG. I fell asleep in that EEG and they found abnormalities (seizure activity, ie spikes or waves) By knowing where they came from the neurologists then went back to the other tests done and they looked closer. With the closer look they found scared brain tissue. A 24 hour EEG can find some things. However they have ambulatory EEG's that can be set up to run for days. I had one and it was set up Friday morning. Saturday evening I had to take it in and they downloaded the info put batteries in and I left. It was then taken back in Monday evening. So yes those can be done. The neurologist can also have him in a monitoring unit for days too. That unit is generally in a hospital and he is hooked up and stays there for 3-5 days. They then see everything going on. Video unit and constant EEG. I watched movies and friends came in. Books were there or they would get one from the library. The food was good but then my friends brought in stuff like subs of anything I wanted. In other words it takes a specialist to show or see things a normal neurologist might not. There as another group that might be able to assist you would be the National Seizure Disorder foundation. With epilepsy the thing looked for is an electrical impulse going off wrong in the brain. That impulse going off wrong causes a chain reaction which is the seizure itself. I do know that seizures can start in one area of the body. Focal seizures do just that. Mine started with a weird feeling in my right hand. They can generalize becoming convulsive seizures. I hope this helps and he gets the assistance he needs Joe P.S. Go to the NSDF (National Seizure Disorder Foundation) They have been trying to work with neurologists who specialize in epilepsy to also work with them. There are some people that so have sudo seizures that could be like your husband...