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sister diagnosed w/ nocturnal seizures
Sat, 04/19/2014 - 01:30hello all...
my 15 year old sister was recently diagnosed (its been a few months...i honestly cant think of what month or day...seems like too long...) with what they think is nocturnal epilepsy with different types of seizures. theyre still running tests and messing with her medication. but theyve seem to be happening a little more frequent lately. i witnessed her have one just the other day and it became all too real for me. i am honestly scared to death. and her being a teenager its even harder. she wants privacy and crap. i bought her a baby monitor so my mom can hear her through the night... shes pretty upset...
im scared of her.... not making it through the night. that was the hardest thing to type. its just all too new to us. so i fear the worst and i tend to do too much research and find the "worst case scenarios".
this is a long post...i know...i guess all im looking for is emotional support from experienced people. and maybe things to look for, what to look out for, tips all that stuff...
thank you
-amber
Amber, no need to be scared.
Submitted by mereloaded on Sat, 2014-04-19 - 09:06
Amber, no need to be scared. They may look scary but they are usually brief and self resolving. While Sudep is real, no need to fear, it is actually a small percentage, most people with epilepsy live to a ripe age. Understanding epilepsy is important to debunk myths, fears and stigma. She is still the same person, so no need to treat her like a freak. She wants privacy because she is just like any other teenager her age. People fearing her, being anxious or scared will NoT help her, as a matter of fact, it makes matters worse. Treatment adjustments are common at the beginning because they need to find the right medication for her and the dosage that works best. This may take some time. I understand the fear and apprehension, this is some scary stuff, it affects everyone in families, but through education I think those fears may ease. Please, don't read horror stories here or elsewhere. Only the bad stuff makes it to the internet and make people afraid and discouraged. Not all is gloom and doom. No one ever talks about treatment success, extended remission periods, people living full lives etc. there is a whole range of severity, different locations, types, conditions under the epilepsy spectrum. Some may consider having the nocturnal type as not too bad because they don't need to worry about having them during the day at work or school. In some states (like va) people can have commercial driver license under certain circumstances if the have only nocturnal seizures. There is so much to learn, the field of neurology is still in chartered territory, which brings hope as science makes new exciting discoveries. Thank you for being so supportive of your sister and for wanting to know more and conduct your own research. One of my friends has nocturnal epilepsy, She lives alone and she has an important state job. She lives a full life, drives and does everything. No gloom and doom there. Best wishes!