sister diagnosed w/ nocturnal seizures

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!

Welcome Your sister was recently diagnoses with epilepsy. You could not say how long ago . Nor did you say anything about the medications she is now taking. Her age would help too. I know you are scared and you don't know what to do and research is showing you all kinds of things some of which scares you more. First epilepsy is treatable. Medications that work for others may not work for others. It takes 2-4 weeks and in some cases longer for the body to get used to the medication. Once that happens adjusting the dosage levels will need to be made. That is like medications levels for one person may be too high for the next. I was a teen when diagnosed. At that age I was growing fast and I had adjustments almost every other month because medications were being set with the person weight. I grew from 85lbs to 135 in less then a year. My brothers were not helping because they were scared that I would hurt myself. It caused stress with me and stress is a trigger for seizures. (one of the bigest triggers) If you read about medications and their issues that many people have posted here you need to realize that people who's medication is working fine and keeping their seizures under control are not here because theirs are working so why do they need to post? Please don't think about epilepsy like they did years ago. There has been a stigma associated with epilepsy. There has been advancements made but there are more to be made. Neurologists went into specializations back in the late 1980's and early 90's. Before that a neurologist read the EEG for anything having to do with the central nervious system (brain) I was diagnosed with Grand Mal, Pettite Mal and Focal Motor epilepsy. SO that means I have the worst kind of seizure, teh slightest kind of seizure and in focal seizures they can land and do in m,any other seizures. I can say I haven't had a convulsive seizure since 1969-1970, I went 3+ years without any seizure what so ever. I have a cousin who also had epilepsy. Well she no longer has seizures and hasn't had them for 30+ years. She is happily married has grown up works a great job drives and is working in her garden today. I also know there are some people like me who come and post comments here because they want people to see our side and not just the other side which posts wrongly at times. I have been living and dealing with epilepsy for 50+ years. I could be standing infront of you and have one and believe me you would not know I had one. My seizures today and nothing like the seizures I had when I was younger. The best thing you can do for her is basically be supportive and treat her like you were before her diagnosis. If you think this is hard on you understand that it is harder on her. I still wanted my privacy and freedom and wanted to be treated like every body else which is what she will want. You have been researching which is good but you do need to slow down and think about the others who do not come here that are doing great have important jobs and live a full and complete life like the person next door. You have read about epilepsy which is an unseen ailment. Do you know the others that are unseen? Heart ailments. AD/HD hearing problems diabeties and cancer. There are many more and yet this ailment does not get treated by the public like the others do. Your sister is important and what you did was showing she is just that to you and your mother. I hope this helps and she gets the assistance she needs and gets seizure free. Joe

thank you for your reply. sorry for not giving correct information. the doctors are not giving us much to go on...all her MRI's and stuff come back clean. my sister is 15, was diagnosed i wanna say around october 2013, so its been a while. she is currently taking kepra (spelling?). i think i saw her have a tonic clonic i believe. she may have others. she actually doesnt know how worried or scared i am, im good at staying composed in front of family. i stay this way because i do not want her to stress about it. i want her to keep on doing her weird teen things. haha. i think i am mainly worried because they are at night or what if we're not around? i do not want her to choke or drown... i am so glad that you are doing great! thank you again, amber