I am quite new here and looking for individuals I can connect with and build friendships and much more with. I’m still learning about narcolepsy I have been diagnosed since I was 18 and now I’m 24. I have two wonderful children a daughter that is 4 and a son that is 15 months, both brilliant children which i love too the end’s of the earth. I spent a great deal of time running away from narcolepsy cause for one I was scared and two i had no way to deal with the information all at once, in my family and our culture god takes care of medical problems such as narcolepsy. I’m still in my path of discovery and happiness any tips and coping methods for day to day life!!! And does anyone know if narcolepsy be passed on to your children!
Sophie, I think this is a trusted website which explains narcolepsy and the inheritance factor.
http://ghr.nlm.nih.gov/condition/narcolepsy
Hello love, I can understand your fears and frustration. It is hard to fight an "invisible" disease an din your position I can't even begin to imagine how hard it is to have those around you understand your struggles. I know I have the hardest time getting my family and many close friends to understand that Narcolepsy is a disease and not only is it this but it is a debilitating disease at times if not all of the time for a lot of us, that takes over our lives and can often control our every day routines. You have come to a good place and although I may not be here all of the time due to my own health, I do my best to come through and catch up when I can. Narcolepsy for me is pretty rough, not all the time, but a lot of the time.
I had a seizure a week and 2 days ago, only complex partial, however the emotional stress caused a cataplectic episode in the middle of the seizure. I ended up losing my muscle tone in my legs twisting my ankle, falling into a metal picket fence like type thing, spraining my shoulder, bruising my shoulder, back and side pretty good, skinning my knee and I hit my head. The best part..... I don't remember a thing. 3 days after I still had a headache so I went to the ER to get checked out, thank the Lord I had know fracture in the bone on my head just minor external swelling form bruising and then the sprains and such everywhere else. They gave me pain meds and told me to take it easy for a few days :(
I would have been fine during that seizure if it weren't for Narcolepsy. Yet, my insurance follows my epilepsy closely, not my Narcolepsy? Anyway, I got a tangent again, I do that a lot lol. If you ever need to talk message me and I promise to do my best to get back to you xx
Hi Sophia! Here is a website dedicated to treating narcolepsy without medication. Hope you can find some useful info there:
Hi Sophia, getting enough rest while raising kids is a challenge. I’d say celebrate your most awake and happy moments with your children each day or week. That was hard for me when I only focused on how to stay awake, because staying awake and alert is really hard! and I’d get discouraged.
What’s nice about God taking care of your narcolepsy is the self-acceptance part. We all have gifts and we all have struggles, and if we’re acceptable to God and ourselves asking for an accommodation from family & friends is easier. I’d fall asleep reading stories so my older son read stories with my younger one, for exam
…for example.
I liked that link Nel shared and I see there’s another from Pwntek , which is a great thing about this group - sharing the science of narcolepsy that we need to know for good health decision making. That part is up to us, definitely not God and our families (unless some parents discovered narcolepsy in their kids and learned about it hat way. It’s rare for others to jump in and Lear about it otherwise). I like the good company and sharing of stories as I’m learning!