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Do you have narcolepsy?

HeartArtHeartArt Posts: 334Registered User Member
edited October 2011 in Parent Cafe
Do you or anyone you know have narcolepsy? My 20 year old son was just diagnosed. My understanding is it is a chronic condition with no cure, only treatment. Does anyone have experience in managing this disease? Thanks in advance for any insight or advice you might have.
Post edited by HeartArt on
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Replies to: Do you have narcolepsy?

  • momma-threemomma-three Posts: 2,762Registered User Senior Member
    Has your son suffered some kind of head trauma in the last year or two that he is just being diagnosed with this now? I know someone who had this but she had it all of her life. Has your son started meds yet?
  • LeftyLouLeftyLou Posts: 564Registered User Member
    No real insight here, but when I was in college, I dated a guy who had it. We'd be kissing, and suddenly, his body got heavy, and I would realize he was sound asleep.
  • cptofthehousecptofthehouse Posts: 24,943Registered User Senior Member
    Provigil and Modafinil help greatly. The former you have to get by prescription and is very expensive. The latter you can order as a supplement from overseas companies.
  • HeartArtHeartArt Posts: 334Registered User Member
    He does not fall asleep suddenly. (LeftyLou, what a shock it must have been!) The doctor described it as a broken switch, he cannot easily go to deep REM sleep. He sleeps but does not always get rest. It can go on for days until he crashes and marathon sleeps. So frustrating! He is being prescribed Xyrem for the night and Adderall for the day, if needed. I hope these medications help because he is extremely irritable, which is not his normal personality. He was diagnosed ADD in high school, but the Dr. says it may have been mild narcolepsy. I wonder what will happen if he can get some normal sleep?
  • MontegutMontegut Posts: 5,917Registered User Senior Member
    So sorry, HeartArt. Has he had a sleep study? My husband would fall asleep while driving. Very scary! He had a sleep study and was prescribed a CPAP machine. He's been using it for ten years now. It is a hassle, especially when he travels, but he just got a new one after ten years, and they are so much more lightweight and portable, easier to care for.

    I am jealous of his use of the machine, as he will sleep for only a couple of hours now and feel fully rested. Before then, he would sleep all night and still feel as though he didn't sleep at all.

    Good luck to your son and hope he gets the issue resolved over the summer before he's back at school!
  • wis75wis75 Posts: 8,959Registered User Senior Member
    CPAP is only useful for obstructive sleep apnea, it won't help central sleep apnea or other sleep disorders. CPAP keeps a collapsable upper airway open via Continuous Positive Airway Pressure. The airway can become more collapsable in deeper sleep, leading to a lack of needed REM sleep and tiredness, despite spending many hours apparently asleep.
  • momma-threemomma-three Posts: 2,762Registered User Senior Member
    Has your son had a previous diagnosis of ADHD and if so is he on adderal or other stimulants? The person I know with it was diagnosed at 16 and currently takes adderal in addition to another medication although she said it is more for her ADHD but does help with the narcolepsy. She has recently stopped driving because as she has gotton older she finds her daytime sleeping harder to control.

    I am sorry I just realized you did mention ADD in an above post. Has your doctor mentioned that there is a higher frequency of narcolepsy in patients with ADHD? There is a person my husband knows who has it and also has ADHD. I just wonder if this is part of the tapestry with either narcolepsy or ADHD.
  • HeartArtHeartArt Posts: 334Registered User Member
    My son was diagnosed with ADD in high school, fairly mild case. (did not have the hyperactive component, just the inability to concentrate when he needed to). Since he has always had sleep problems, upon recommendation of his family doctor, we just had a sleep study done that was negative for sleep apnea, but revealed the narcolepsy. (they kept him during the day the next day and tested for narcolepsy). I understand there is a high correlation between ADD/ADHD/sleep apnea/narcolepsy. It is a little difficult to unravel, but I am looking forward to the new medication to improve his sleep. I am hoping it really helps because he is miserable with no sleep.
  • MomLiveMomLive Posts: 2,370Registered User Senior Member
    HeartArt, I just did a search and found your thread. I could have written it word for word. My son will be 20 next month and in the last 3 weeks was diagnosed with ADD (inattentive type) and today, he finished a sleep study and they told him the results were consistent with narcolepsy. We won't get the final report for several more weeks but we are now wondering if the ADD symptoms are caused by the sleep disorder or vice-versa. There seems to be some correlation.

    I have to admit I'm having some major anxiety tonight about the narcolepsy. Some of the stuff I'm reading is rather scary. Son hasn't been home to google it yet but I'm sure he's not going to be happy when he does.

    His main symptom have been an inability to get to sleep but, more importantly, he doesn't feel rested when he does sleep - even after 12 hours of sleep! He's always been a good student but not at the very top of the class. He says he has difficulty paying attention. His symptoms seem to be classic ADD. The psychologist who administered the ADD testing said his IQ is over 140 but the ADD isn't allowing him to function at full potential. The sleep specialist told us that not getting enough sleep can result in a 30% decline in cognitive functioning. Very confusing.

    HeartArt - did your son try the sleep medication? Did it help? What was it?

    Would also love to hear from people with experience with narcolepsy. Did it progress or have you been able to control it with meds?
  • sewbusysewbusy Posts: 371Registered User Junior Member
    HeartArt:
    Feel free to PM me. My 21 year old suffered for years, finally being properly diagnosed after he had to medically withdraw at the end of his sophomore year of college. He too, is on Xyrem and for now, it has done wonders. After five horrible years, he has his life back and can function. He has been on it for over a year and is a changed person. No ADD at all with him, but getting the proper diagnosis and medical treatment was frustrating and critical. One highly respected doctor transposed her own son's trauma at an Ivy league onto him, telling him it was psychological and that it was his way of coping with his inability to deal with the demands and stress of an ivy league environment. I'd like to do a few not so nice things to her, let me tell you..... Did I mention that he finally got his first B(+) this semster and I was happy that he now has that to eliminate any goal of staight A's. College is also for fun, especially after what he has been through. Like he really needed someone telling him it was all in his imagination. The right doctor is CRUCIAL here. Xyrem is an extremely dangerous drug and needs to be dosaged in the proper way to best help your son.
  • MomLiveMomLive Posts: 2,370Registered User Senior Member
    Sewbusy - what sort of symptoms was your son having prior to diagnosis? I've spent the evening reading up on this but I am not totally convinced my son has narcolepsy (of course, until we meet with his doctor, we won't know for sure what the diagnosis is). He does report feeling tired and not sleeping well. He does take occasional afternoon naps but I don't see anything that is totally out of the range of normal teen behavior. While his HS grades weren't 100% on par with his 'potential' he is still a good student (had a 3.8 GPA freshman yr of college in an honors program), gets up early for school, is very socially active, seems to be thriving (though he is prone to sleeping very late on weekends.) I'm still in shock that they told him he probably has narcolepsy but I would be thrilled if he got some medication and felt rested.
  • mantori.suzukimantori.suzuki Posts: 3,347Registered User Senior Member
    Provigil and Modafinil help greatly.

    FWIW, modafinil is the generic name for Provigil, Alertec, Modalert, and others I'm sure.
  • Momom2Momom2 Posts: 416Registered User Member
    I worked with a man once way back when I was in grad school. He had narcolepsy without the cateplexy (typical heavy body dropping off to sleep). His most troublesome symptom was hypnogogic hallucinations. He actually came in to our clinic thinking he might be schizophrenic. This gentleman was probably in his late 30's-40's. Often people with atypical narcolepsy go undiagnosed for years.

    His was managed, once diagnosed, with medications. That was many moons ago, so I couldn't offer any suggestions right now. But, best of luck to you and your son.
  • sewbusysewbusy Posts: 371Registered User Junior Member
    MomLive: My son started with normal teen symptoms of being hard to wake up, seeming tired, never feeling like he got refreshed even if he slept most of a weekend, etc. He too sometimes couldn't fall asleep. He did have mono spring semester of his senior year in high school, which didn't help. It took him a very, very long time to come out of that. His pediatrician said it was one of the worst cases he had ever seen; looking back we now feel it was probably the narcolepsy and not just the mono. It just kept getting worse and worse until he was so sleep deprived he could no longer concentrate while reading a textbook, starting sleeping through classes, etc. When I say he was sleep deprived, understand that he was "sleeping" 10 or 12 hours per day, but unbeknownst to all of us, he never went into the deep sleep state so all of his sleep time really meant nothing. He also eventually started experiencing sleep paralysis.
    Our youngest daughter is going off to college in the fall and we are going to have her evaluated for narcolepsy as well. Same symptoms, but not as severe. Our other two children we could wake up with just a bit of prodding, they could come home and crash with an hour or two nap and it would refresh them, they could catch up on sleep over the weekend. Looking back, it should have been so obvious to us that what he was going through was not normal.
    Why will it be weeks before the final results? Make sure that if the first meds don't work that he tells his doctors and they try different ones. It will be a wonderful feeling for you and him when he comes back and joins the living, believe me.
  • MomLiveMomLive Posts: 2,370Registered User Senior Member
    ^Thanks for the info, Sewbusy. My son definitely has components of that - not feeling rested after many hours of sleep. Oddly enough, he reports that he feels much better on the days when he gets very little sleep and too much sleep makes him feel worse. He doesn't fall asleep in class or reading, etc. but he says he has a very difficult time concentrating (hence, the ADD diagnosis). We've always been able to wake him up with a little bit of prodding and he now gets up on his own. Even had 8am classes last year and was able to make it most of the time. I guess there are different degrees of narcolepsy though my understanding is it can get progressively worse. His circadian cycle is definitely messed up and we can't convince him he needs to get into a regular sleep schedule. I'm thinking about getting him a light therapy device. Some people with narcolepsy say it helps to get the sleep schedule regulated.

    I did talk to him last night. He said he has had many bouts of sleep paralysis and an occasional hypnagogic hallucination. He seems unperturbed about the whole thing and really just wants to see if he can get some medication to help him feel rested.

    Don't know why the report takes 2 weeks but I guess they need time to get it to the pulmonologist and for him to interpret the results. My son reported he had early REM sleep in 2 of the 5 naps he took yesterday and they say that is a positive indicator of narcolepsy.

    Anyway, thanks for the information. I feel better today. Need to stay off the internet when it comes to medical stuff - it can be scary and overwhelming at times.
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