looking for answers!

[summerfun73]

Hi guys. I am new to this forum and actually stumbeled across it while looking for some answers. A little history, started having nocturnal seizures at the age of 24. Been on a couple different meds , tegratol, lamictal, topamax, and now on topiramate. I have been very fortunate in that my seizures have no affected my daily life or driving ability. Now things have changed, I am experiencing a new type of seizure, while I am awake my eyes will uncontrollably pull to the left side and my head turns along with them. This lasts about 5 seconds but happens frequently through the day. By the end of the day I feel as though I have been hit by a car. Told my neurologist about this and he shrugged it off as no big deal.. I am wanting to know if anyone else here has experienced this type of seizure. I am starting to worry a bit becouse my nocturnal seizures are controlled well with my current meds but this new seizure is beginning to be more frequent, like one every month.thanks in advance.
Tim.

 

[Nakamova]

Hi summerfun73, welcome!

I recommend you find a new neurologist! If he doesn't take your symptoms, discomfort and concern seriously, then he isn't worth your time.

What you describe could be a seizure, but it could also be a side effect of the topirimate (Topomax). It's well-known for causing eye problems: "Uncontrolled back-and-forth or rolling eye movements" is a side effect experienced by over 10% of patients taking the med.

Best,
Nakamova

 

[epileric]

Welcome Tim

You actually described the seizures I get. When I was younger I'd have seizures where my head & eyes were pulled to the right. I was always tired afterwards but I remember that sometimes my eyes would hurt from pulling so far to the side.

That did stop eventually but about a few years ago I had a small seizure & had no trouble hiding it but for some reason my friend asked me if it was over as soon as it was finished. I asked how they knew I had a seizure & they said it was because my head was pulled.

That is the thing about seizures. They do change throughout life. I never used to have nocturnal seizures until recently & now I've been having an awful lot of them.

When your neurologist shrugged off your head pulling to the side did he do say as if it had nothing to do with seizures or that it was just not unusual? I ask because judging from what other members have said I'm sure it's not an uncommon symptom for people with seizures.

 

[summerfun73]

Thanks guys for the input. I am fairly certain that it's not my meds that are causing these seizures. I have been on two different medications since these started. Thank you epileric for shedding some lightvon my situation. I think your right about my neurologist, he didn't seem to concerned at the time. All though this happened yesterday I still feel horrible today. Much worse than when I have a seizure while sleeping, sore all over like I have the flue.Anyway ,I am going to take a trip back to the neurologist and insist that he get s serious about this condition. Thanks again for your input.
Tim