Narcolepsy Support Group

Our 18 year old high school senior has just been diagnosed with narcolepsy.While this has answered many questions of his behaviors over the years it has opened up tons more.He is struggling to get into a college right now as his ACT test scores are not very good.He has tested three times and scored 20 all three times.He has been put on adderall rx with minimum success so far and will retake the test again hopefully with some time assistance during testing.There is not much good info on narcolepsy that I have found and most stories are not real positive.Is there any hope for him to live a relatively normal life?Confused in Wisconsin.

I'm sorry to hear about your son's difficulties He's lucky to have such a concerned and supportive family. Many people aren't diagnosed until much later in their lives, so its good that he can start treating the real issue at a young age.

What are his symptoms like? How sleepy is he? Does he have cataplexy?

There are other medications besides Adderall for narcolepsy. Provigil, Nuvigil, and Xyrem are the ones that come to mind. I've been taking Provigil for a couple months and I can proudly say I haven't fallen asleep in class since then However, Adderall is probably the cheapest option because it is available in generic.

As far as cures? Narcolepsy isn't curable. There is research on the links between a gene mutation, the neurotransmitter hypocretin, and narcolepsy. Maybe in the future there will be treatments at the genetic and molecular level.

I wish you and your son the best of luck There is definitely hope for him to lead a "normal life." We post our worst fears and frustrations on websites like these. We leave out a lot of the positive in our lives.

hihi bischel..I was diagnosed with Narcolepsy shorty after starting college. It is because I know I will never be normal, that said I am okay with it. Why? Because I am going to graduae in 1.5 years with my BS in chemical engineering and maybe apply to med school, maybe not. Also, I have gotten back to exercising regularly, trying to get back to 8% body fat. So yes, there is hope

Welcome to the group! I am glad you have joined us, he absolutely can have a normal life. It will be difficult to adjust to at first but given time he will learn to adapt to the extra effort he will have to put forth into it, naps will be important if he can get them into his routine in any way. I never tried the amphetamines, I take Nuvigil and love it. I have no negative side effects. I am way more alert, it lasts long and I dont have any episodes on it. A good trick is to wake up earlier than needed to take the dose of meds to try to get them in his system before he needs to get up. Since some Narcoleptics are very hard to wake up.

You seem super supportive, that is so wonderful! We will be here to answer any questions. I wish him the best of luck, here are some sites to browse through to help educate and also some sites about coping with Narcolepsy, also therapy may not be a bad idea for him to learn some coping mechanisms where this is so new to him. You could be his support partner. Just an idea! Good Luck. Stacey

Alot of the sites have tabs on the sides to click for more info:

http://www.mayoclinic.com/health/narcolepsy/DS00345/ DSECTION=coping-and-support

http://sleep.emedtv.com/narcolepsy/coping-with- narcolepsy.html

http://www.healthguidance.org/entry/1305/1/Coping-with- Narcolepsy.html

http://www.helpguide.org/life/ narcolepsy_symptom_causes_treatments.htm

http://www.webmd.com/sleep-disorders/guide/narcolepsy

Thankyou for your responses.Hope is a good thing.Our son does not have cataplexy and I do not know how to discribe his sleepiness.He sleeps through parts of all his classes the last year or so.He sleeps whenever he has a chance to ,riding,reading, watching tv,in class,etc.He does lead a fairly normal, be it sleepy life.He plays sports,has friends and socializes.Getting into and getting through college is a concern.

I dont know if you looked at those sites but some were about coping with Narcolepsy and I think I saw something about schooling, I dont know though. Good Luck.

i was diagnosed as a 17 yr old senior in high school. when it comes to extra time on the act, make sure they are going to accomodate him before the actual day he goes. i was told i would get accomodations for the sat and when i got there there was nothing there for me. when your son goes to college make sure he goes to disability services, so he can get the accomodations he needs to successfully complete college. i was diagnosed almost 17 years ago, and after a ten year break in college i started again in spring 2005. i am now a college senior and after this semester i will have 16 hours left. in december i plan on graduating with a bs in mathematics nd going on to a prestigious college for my phd with med school aftert that. my gpa is 3.53. it is possible to succeed with narcolepsy. for me the disabilities office has helped alot. good luck to your son. he can do anything he wants. tell him that it can be done and more power to him for trying. sheri