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Is Narcolepsy Progressive?


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#1 canadian

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Posted 22 July 2009 - 10:29 PM

My son was just diagnosed with narcolepsy. He is 12 years old and symptoms began this past easter weekend. Are symptoms generally progressive or is there a good chance they will stay the same?

#2 Mike M

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Posted 22 July 2009 - 11:06 PM

My son was just diagnosed with narcolepsy. He is 12 years old and symptoms began this past easter weekend. Are symptoms generally progressive or is there a good chance they will stay the same?


It seems to depend on the individual. For some, the symptoms remain that same, except when meds help to alleviate them. For others, the symptoms definitely change over time. Cataplexy might worsen, or improve. EDS might become far more severe, or become far less burdensome. It is one of the more infuriating aspects of the disease. Hopefully, others will also reply with their own stories, but for me things definitely seem to be progressive. My symptoms slowly worsened over a number of years. I personally think that my EDS has gotten worse even after my diagnosis, but I am also handling the disease better. Thus, I am able to do more, even though I feel more tired. Please continue to post. I also hope that your son will post and put forward his questions, frustrations, successes, and insights.

#3 Bafflegab

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Posted 23 July 2009 - 09:21 AM

Mine get worse--much worse--when I'm under a lot of stress. Other than that, my symptoms have stayed remarkably consistent for the past twenty-plus years. The one blessing of your son being diagnosed so young is that the likelihood of him having to endure years of misdiagnoses drops dramatically. It's still possible (I've received so many diagnoses from so many doctors that it surprises me I have any faith at all in the medical establishment), so try to keep your son's medical files well organized until he's ready to do it for himself.

#4 sleepless sleeper

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Posted 23 July 2009 - 12:41 PM

I've had n since i was younger than your son. my n got just a bit worse on it's own, but it was not much worse. When I got pregnant the first time,tho, it got much worse. the second time was WAY worse, and when my mother died, I had family members do atrocious things that caused incredible stress. My n just spiraled to an all time horrible and has not gotten better.

n is an auto immune disease, so i assume that big stressors placed on the body or experienced can make the disease worse. that's just from personal experience.

NN and medical profession state that n is not progressive. this needs to be changed because it is not true for many of us. it is true for some, and i hope that it remains that way for your son.

#5 sunrisemoon

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Posted 23 July 2009 - 09:26 PM

My son was just diagnosed with narcolepsy. He is 12 years old and symptoms began this past easter weekend. Are symptoms generally progressive or is there a good chance they will stay the same?


My symptoms tend to worsen when I'm under a lot of stress, or if I don't get enough down time. I was diagnosed in about 1999/2000 and have had relatively mild (in comparison to a lot of people here) symptoms and no cataplexy. Having said that, I do believe I've had two major cat attacks in the last few years, but that's not enough for the docs to say for certain that's what they were. I'm almost 37 now and my symptoms started mid high school. As far as progression, my EDS is definitely worse these days. It is, as far as I can determine, directly related to starting work in a job for a boss I hated, leaving that job with no job to go to, going to school to completely change careers and about 18 months of barely enough work to pay the bills while I studied and attempted to get my own business off the ground. So I can see why my symptoms are worse. I'm not sure if they will lessen again once I'm more settled in my own business and can dictate my hours etc to suit my need to have breaks/short sleeps during the day. I'd like to think they will.

I think it's good for you both that you and your son are dealing with this now. He and you will have a level of acceptance and learn to deal with what comes up earlier (and hopefully with a bit more patience) than those of us who weren't diagnosed till our late 20s/30s.

Good luck to you.

#6 canadian

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Posted 24 July 2009 - 02:05 PM

Thank you for the positive responses to my question. You certainly don't get positive or uplifting comments from medical references! Thank you for sharing your stories. I worry about his future and the unknown. If symptoms stay the same then I feel positive that we can manage it since I know what we are dealing with and we have a good doctor. If symptoms worsen then that scares me. What frightens me the most is cataplexy. The doctor has a suspicion that there might be a cataplexy element and that it is something to watch for...that puts fear in the my heart

#7 canadian

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Posted 24 July 2009 - 02:14 PM

My symptoms slowly worsened over a number of years. I personally think that my EDS has gotten worse even after my diagnosis, but I am also handling the disease better.


How have you managed to handle the disease better? Any tips for my son's upcoming busy teenage years?

#8 merrymom1013

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Posted 26 July 2009 - 01:22 PM

Any tips for my son's upcoming busy teenage years?

My daughter, 16, was diagnosed at 11. Her doctor warned us that early adolescence can be tough in terms of getting the right medications/doseage, etc. He said the brain chemistry is growing & changing as much as everything else. We found ages 12 to 14 were pretty rough as he predicited. Since about 14 1/2 (after her major growth spurt), things have been easier. Her meds have stayed much the same, symptoms are well controlled, & with a bit more maturity, she is better able to pace herself & cope. Your experience may not be the same, but if seems like things are getting worse, just keep in mind it may even out again.
Pacing has been important- try to avoid a late night or all day thing on both Friday & Saturday, etc. Trying to keep a bedtime helps- something she gets better now than a couple of years ago. Then she was equating staying up late to being more grown-up. Also, make sure your son knows that alcohol & pot can mess up how his medication is working. My daughter jokes about starting a designated driver service when she goes off to college.
We've found the medication doesn't work so well when she is sick with something else- strep, virus, etc. So more than most, he may be more tired when he doesn't feel well.
Looking back, I feel we were blessed to get the diagnosis when we did. Her symptoms were controlled & coping skills emerging before it was time to drive. I was able to advocate for school accommodations ( the need has fluctuated over time). She has learned to deal with all of this before she goes off to college.
Sadly, your son may not be able to be in the military, a pilot, air traffic controller, do long distance driving, etc. But as the doctor told my daughter, the narcolepsy does close a few doors, but most are still wide open. You are also blessed with the time to support & guide him.

#9 hathor

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Posted 26 July 2009 - 04:17 PM

hi. i was about the same age as your son when i was diagnosed, i am 30 now. i was first diagnosed with narcolepsy and the the cataplexy was dianosed when i was about 16. for me they have got worse over the years. i just wish i had places like this to come to when i was at school and had more access to information and i know i would have been able to handle things differently. it may be hard to get round the fact that your son has narcolepsy but i beleive its only as hard to cope with as a person makes it. having naps helps and meds can for some people. its just a case of learning things like what can trigger an attack etc. like someone said your son might not be able to have jobs in certain places but there is nothing stopping him having a normal life. it is good for both of you that he has been diagnosed young so now you can get on with learning how to deal with it. i have learnt so much since i joined this site that i never knew before so just keep coming here im sure u will both learn alot and its good to know you are not alone!!!!

#10 Henry G

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Posted 27 July 2009 - 10:22 AM

My Narcolepsy decreases when I am under stress or in extreme survival mode.

My Narcolepsy increases considerably however when everything is alright and I am perfectly healthy.

I thought everyone suffered from this narco-paradox but seems like it's just me.

The way I see it is - the healthier I am , the more energy narcolepsy has to drag me down - like a negative-loop neuro-mechanism.

My Narcolepsy is in no way psychosomatic - if anything anti that.

Which is in stark contrast to say my asthma or eczema etc - which are things that get worse when I am under stress etc.

I can imagine cataplexy (something I do not have .. or at least for now .. fingers cross) would be something that would increase say with stress. Because it is more emotionally wired.

I mean some emo-glitches like nocturnal spasms in me - does increase a lot with stress to the point of utter unbearability.

But my noisy neighbours upstairs moved out and so I have been gradually less stressed, spasms gradually decreasing .. but then narco grad increasing uh oh .. ah well .. it's a bugged broken neural system here/ wish I could reboot.

#11 canadian

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Posted 27 July 2009 - 05:48 PM

My daughter, 16, was diagnosed at 11. Her doctor warned us that early adolescence can be tough in terms of getting the right medications/doseage, etc. He said the brain chemistry is growing & changing as much as everything else. We found ages 12 to 14 were pretty rough as he predicited. Since about 14 1/2 (after her major growth spurt), things have been easier. Her meds have stayed much the same, symptoms are well controlled, & with a bit more maturity, she is better able to pace herself & cope. Your experience may not be the same, but if seems like things are getting worse, just keep in mind it may even out again.
Pacing has been important- try to avoid a late night or all day thing on both Friday & Saturday, etc. Trying to keep a bedtime helps- something she gets better now than a couple of years ago. Then she was equating staying up late to being more grown-up. Also, make sure your son knows that alcohol & pot can mess up how his medication is working. My daughter jokes about starting a designated driver service when she goes off to college.
We've found the medication doesn't work so well when she is sick with something else- strep, virus, etc. So more than most, he may be more tired when he doesn't feel well.
Looking back, I feel we were blessed to get the diagnosis when we did. Her symptoms were controlled & coping skills emerging before it was time to drive. I was able to advocate for school accommodations ( the need has fluctuated over time). She has learned to deal with all of this before she goes off to college.
Sadly, your son may not be able to be in the military, a pilot, air traffic controller, do long distance driving, etc. But as the doctor told my daughter, the narcolepsy does close a few doors, but most are still wide open. You are also blessed with the time to support & guide him.

MerryMom, thanks for all the practical advice. Very much appreciated!

What types of accomodations has the school system done?

Will the principal or teachers likely be familar with narcolepsy?

#12 merrymom1013

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Posted 01 August 2009 - 09:09 AM

What types of accomodations has the school system done?

Will the principal or teachers likely be familiar with narcolepsy?

The accommodations have varied according to her need, but in many ways they are similar to those for a child with ADHD (which schools are very familiar with). She had flexibility with attendance- occasional late mornings to absences, extra time & extra breaks on tests, reduced homework or extra time for assignments, permission to get up & take a break if she finds herself getting sleepy, quiet reminders from a teacher if she zones out, no big deal made if she falls asleep in class, copies of notes (in case she did zone out), a place to nap if needed, airconditioning (getting overheated made her cataplexy worse). When her cataplexy wasn't well controlled, she wasn't allowed to do climbing, etc in gym class. For high school, think about scheduling- don't put the hardest class first thing if waking on time is a problem. If a nap will likely be needed, schedule a study hall before or after lunch time to provide a good nap break.
I tried to think about what things would be difficult for her, researched accommodations & then worked with the doctor to incorporate the recommendations (& reasons for them) in a medical letter for the school. Much of the time, she used few if any of the accommodations- all most kids want is to be "normal" & not stand out. She certainly never used them as an excuse or crutch. But there were & are times they are needed & it's nice to have them already in place.
Now that she is hoping to go away to college in another year, it looks like a private dorm room will be key- for naps, and sleeping with xyrem.
Most likely your school staff won't know about narcolepsy. The most critical accommodation is that they need to learn about it- staff training. I got great brochures from the NIH & information from Narcolepsy Network . I also wrote a letter for staff explaining that my daughter had this neurologic condition, which symptoms were a problem for her, and how they might affect her at school. I didn't want everyone rushing to call 911 over a minor cataplexy attack.
The principal & teachers will be familiar with ADHD (& there can also be fluctuating levels of alertness/focus with narcolepsy), and neurologic and autoimmune illnesses. You will have to help them "get it" from there. If you have trouble, please contact Narcolepsy Network.
By the way, when she was younger, she was mortified that I made such a "big deal" & let all the teachers know- it did pass. Not necessarily a school accommodation, but she finds she does better with homework etc by taking a short acting dexadrine (low dose) when she gets home.
Good luck!

#13 sleepylisa

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Posted 25 August 2009 - 12:41 AM

How have you managed to handle the disease better? Any tips for my son's upcoming busy teenage years?



Hi Canadian,

My symptoms started in early highschool, but as most people on here I didn't get diagnosed until (ironically ON) my 30th Birthday. I know you worry about your sons future, but if I can offer you one piece of advice and comfort...he is VERY lucky to be diagnosed at a young age. Medically, yes it's important, but MORE IMPORTANTLY is the emotional toll that going undiagnosed for so long has on a person suffering. For well over a decade I struggled with doctors who didnt believe me, parents and friends who thought I was lazy, GUILT!!!!!! over feeling so tired and not being the daughter to my parents that I could have been (i.e. was no longer the fun loving easy going child I had been...she was still in there!! but was just always too tired!!.) Somehow I managed to make it through college, moved to Hawaii and backpacked the islands, followed my dreams and trained dolphins in a research lab in honolulu (where I met my husband and we started a family)...I did all of this while completely exhausted. I spent every free moment I could find and napped. Saturdays...spent napping. I found a way to make it all work...but there were A LOT of people who were critical along the way and caused me to doubt myself. I know (esp. my parents) thought at the time I was just trying to get out of saturday chores and couldnt believe I was really that tired...but I was. It's not something you can shake, like splashing cold water on your face, etc. It will be a challenge for your son, but with your support and understanding he can do most things anyone else can. It wasn't until after the birth of my son (he's 4 now, VERY hyper, AND autistic...not easy for a narcoleptic to take care of, and a source of conflict for my husband and I but we make it work) that my EDS became SO SEVERE that I could no longer function.

I am getting sleepy and rambling here so let me summarize!! Mine WAS/has been progressive, but the progression is what finally led to the diagnosis. It took a long time to figure out what meds and dose worked for me, but I finally have my life back and am that fun-loving, easy going person that couldnt wake up. The emotional scars and poor self-esteem, however, is somethingI still struggle with and is often the hardest part. For your son, hopefully that can be avoided or minimized by an early diagnosis and undeerstanding Mom!! Good luck to you both!! --sleepylisa

#14 Terri

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Posted 25 August 2009 - 11:43 AM

My Dr told me N is progressive. I was only diagnosed 3 yrs ago, at age 51. But, I realized that the diagnosis explained why I have ALWAYS slept more than anyone I ever knew. My aunts even remembered that I slept a lot as a kid. So I don't know exactly when it developed....seems like it has always been there. Just got worse over decades. I didn't have a lot of mis-diagnosis problems, but I did have challenges w/ my weight and over years kept gaining. My family dr would give me something on a temporary basis to help me lose lbs. It worked, I felt great.....until I went off the meds. looking back...........it's easy to figure out why I felt better. I was treated for a "text book case of depression" before N but was kept on the same meds after N diag. Dr says they are REM-suppressents. I had gained up to a little of 200lbs just before final diagnosis. At 5'5" that isn't attractive or comfortable! After diagnosis, which ended up being N w/o cataplexy, obstructive sleep apnea, and some wierd wiggly leg thing that happens only while asleep, not RLS, I was stable for a year!!! I felt great. Better than I had in years and years. And I lost 60 lbs. It just came off. I wasn't craving carbs and hungry all the time and I was up and active. But after about 15 months, I began gaining weight and getting tired and hungry again. That was last November. In the 10 months since, I have gained back 50 lbs and EDS has increased tremendously. I drag thru every day and sleep more. Dr has tweaked meds and nothing seems to help much. During this last few months is when my DR told me that it is progressive. I just can't figure out how to pull out of this downward spiral. Can't get away from the extreme stress of too many rental properties to take care of; they don't bring in enough to break even right now and we can't sell for what we owe, if we could sell at all, and no money to pay someone else to manage things. Dr tells me I'm pretty much doing as much as can be done. From what I have read, meds I take are pretty much the latest, most effective, w/ the least side effects. Take 20mg Lexapro, doubled EffexorER to 2 x 75mg, upped the 200mg Provigil to 2 x daily then replaced it with 150mg Nuvigil, and need 3 doses of xyrem and 3.75mg per dose at night, plus Mirapex for the leg thing and the BiPap!!! Latest change was trying 200mg Provigil at bedtime, too. I have a few other meds and I feel like a frickin pharmacy!!! but things are not improving. Does it just continue getting worse and harder to stay awake???? How do people deal with this?????