Age of Narcolepsy Onset?
Question:
Mongo wrote: > I recall reading that an estimated 75% of narcoleptics have > onset during puberty, although onset can be at any age.
That would map with both my daughter’s and her aunt’s experience. > A lot of researchers think that N is a genetic predisposition > (there is a blood test that looks for a certain gene mutation) > that is activated by an environmental trigger such as puberty.
So, in addition to the standard sleep study and next day tests, a dna test can be done? Fascinating. That can certainly help narrow down the diagnosis. (Though as also noted … it does not guarantee an answer). > … I would be happy to try to answer any questions you have.
Yup. That’s why I came here. > I was lucky to have been able to accomplish what I did for > so many years without treatment.
I’ve been watching my daugther fairly closely. When she started to complain that she falls asleep all the time and it interferes with her life, I knew it was time to start the process of working to a diagnosis. As I said, I’ll see a neurologist that specializes in sleep disorders. If he seems to be pretty good, I’ll get my daughter scheduled to see him. (My last sleep specialist thought that all that was wrong with me was anxiety. I only WISH that was the case!!) > Cataplexy for some narcoleptics is absolutely devastating.
That I know she does not have problems with that, either. > Undiagnosed N can be very devastating to a person.
Yup. I understand the implications, and don’t want her to live with that struggle. If it can be avoided, then I’m all for it. She seems to follow her aunt in several ways. She struggles with depression. And now the sleep problems seem to be surfacing. I want to nip this one early. > … it is very much like a normal person trying to > function after going without sleep for 36 hours.
Yup. I am certain it impacts her school work. It’s not that she doesn’t care. She cares deeply and gets frustrated that she has these ‘brown outs’. > You can imagine the potential impact on someone’s > self-esteem.
Yes I can. It’s why I’m concerned. Regards, =jbf= John B. Fisher
Response:
It appears my daughter is developing narcolepsy. Her aunt seems to have very similar symptoms. I’m still trying to get her aunt to see a sleep specialist. I will visit a new (to me) sleep specialist in my area. If that doctor checks out okay, I’ll schedule my daughter for a visit. So, yes, I try to follow my own advice … see a certified sleep specialist. But I was wondering? Does most everyone develop narcolepsy in their teen years, or do most folks struggle with this througout their life? Regards, =jbf= John B. Fisher
Response:
John – I recall reading that an estimated 75% of narcoleptics have onset during puberty, although onset can be at any age. A lot of researchers think that N is a genetic predisposition (there is a blood test that looks for a certain gene mutation) that is activated by an environmental trigger such as puberty. Once my N was diagnosed (at age 50 as you are probably aware from other posts I have made), I was able to trace the onset of my symptoms back to when I was 13. That was also an age where I grew 12 inches taller in a little over a year and my voice changed. However, I am pretty certain I had some of the symptoms other than EDS (excessive daytime sleepiness) before then. For example, I can remember instances of sleep paralysis at a much younger age and also what were probably hypnogogic and/or hypnopompic hallucinations when I was still in grade school. John, you know that I would be happy to try to answer any questions you have. I was lucky to have been able to accomplish what I did for so many years without treatment. I am also fortunate to rarely experience cataplexy. Cataplexy for some narcoleptics is absolutely devastating. Check out Edie Lou’s narcolepsy site from my list of links (C5) for some real horror stories because of her undiagnosed N. Also, you might want to check out YAWN (Young Adults With Narcolepsy) (Item C2) for more stories. Undiagnosed N can be very devastating to a person. Frequently the person is believed to be lazy and uncaring when quite the opposite is true. It is hard for me to compare myself to what a normal person feels because I don’t have the latter experience, but my guess is that when I am struggling with N (what I now call a trip to Mongo Land <g>), it is very much like a normal person trying to function after going without sleep for 36 hours. I can manage, but it’s a struggle and I am likely to make mistakes or just sit there spinning my wheels without going anywhere mentally. You can imagine the potential impact on someone’s self-esteem. That is why I really push a young person who may have N to get diagnosis and treatment while he or she is still young enough that treatment can improve the quality of their education and adult life. I know that you know that one should seek a sleep doctor who is a neurologist rather than a pulmonologist for someone with N, but I mention it for the benefit of others who read this. Actually, if you can find a psychiatrist who is certified for sleep disorders, that might be an even better choice. N is treated with medications and it is a real benefit to have someone trained in observing behavior watching the patient’s reactions, especially because most of the medications used to treat EDS are controlled substances. And many of the meds have widely varying effects, too, so it is really difficult to pick the right one for the individual. Also, meds for cataplexy are tricky as well. I wish you well in finding diagnosis and treatment. I hope that you can persuade her aunt to get herself checked out, too. Perhaps you can find some info on the web that will assist her. Kent Taylor (Mongo) – Hide quoted text — Show quoted text -John B. Fisher wrote in message … >It appears my daughter is developing narcolepsy. Her aunt seems to have >very similar symptoms. I’m still trying to get her aunt to see a sleep >specialist. I will visit a new (to me) sleep specialist in my area. If >that doctor checks out okay, I’ll schedule my daughter for a visit. So, >yes, I try to follow my own advice … see a certified sleep specialist. >But I was wondering? Does most everyone develop narcolepsy in their teen >years, or do most folks struggle with this througout their life? >Regards, >=jbf= >John B. Fisher
