Narcolepsy Changes Across the Lifespan

3 min read

Reviewed by: HU Medical Review Board | Last reviewed: August 2024 | Last updated: August 2024

Different life stages can have an effect on medical conditions. This includes narcolepsy. Life changes can mean new symptoms, changes to medicines, and different ways of managing your illness. Here is a closer look at how narcolepsy changes according to where you are in your life.¹

Children

Kids with narcolepsy have different needs than adults with the condition. Children also have fewer treatment options. Younger children are physically smaller and have a higher metabolism. This means your doctor may suggest a different dose for a young child versus an adult or older kid.¹

The following drugs are approved by the US Food and Drug Administration (FDA) to treat children and teens with narcolepsy:^2-5

Wakix® (pitolisant) – for treatment of excessive daytime sleepiness (EDS) in children ages 6 and older
Xyrem® (sodium oxybate) – for treatment of EDS and cataplexy (sudden loss of muscle tone) in children ages 7 and older
Xywav™ (calcium, magnesium, potassium, and sodium oxybates) – for treatment of children ages 7 and older with narcolepsy plus cataplexy or EDS

Doctors also prescribe other medicines for off-label use in kids. Off-label use is prescribing a drug approved by the FDA for a use not approved by the FDA. Several drugs are used off-label to treat EDS and cataplexy in children with narcolepsy, including:^2,3

Dexedrine® (dextroamphetamine)
Provigil® (modafinil)
Ritalin®, Concerta®, Metadate® (methylphenidate)

Children may experience changes in their growth with the use of narcolepsy drugs. Amphetamines can slow growth, but the change is only temporary until a child stops taking the medicine. Meanwhile, Xyrem may cause kids to make more growth hormones. Experts are not sure this increase affects kids’ height or weight.¹

People who are or may become pregnant

If you are having a baby or thinking about getting pregnant, talk to your doctor about changes to your narcolepsy medicine.¹

The FDA has classified many narcolepsy drugs as Pregnancy Category C. This means:¹

The drug has been studied in animals
The drug has shown harmful effects on unborn animals
There are not enough studies on humans to be clear about the drug's impact on unborn babies

Xyrem falls into Pregnancy Category B. That means:¹

Animal studies have not shown harmful effects on unborn animals
There are not enough studies on humans to be clear about the drug's impact on unborn babies

Your doctor will likely suggest you stop taking narcolepsy medicine before and during pregnancy. The one exception is if you are unable to function without the drug. But if more naps during the day can ease your symptoms, it might make sense to stop taking narcolepsy medicine before and during your pregnancy.¹

If you have cataplexy, tell your obstetrician that you have narcolepsy with cataplexy. Some women have experienced cataplexy during labor, but this is uncommon.¹

Older adults

As you age, lifestyle changes and other medical conditions could prompt an adjustment to your narcolepsy medicine. First-line treatments for adults with EDS include:^1,3-5

Nuvigil
Provigil
Wakix
Xyrem or gamma hydroxybutyrate
Xywav

Second-line and third-line treatments include:³

Amphetamines
Methylphenidate
Solriamfetol

Most people with narcolepsy have it for their entire lives. But symptoms usually balance out as you age. They may even get better. If you find you are sleepier in adulthood, this may be the result of a medicine you take. Or you might have another sleep disorder, like sleep apnea.¹

If you develop other medical conditions as you age, your doctor may need to adjust your narcolepsy drugs. For example, you should not take amphetamines if you have heart disease. And you should not take Xyrem if you live with high blood pressure or heart failure. People with heart problems, seizures, or glaucoma should not take protriptyline or clomipramine. You should work with your doctor to find alternative treatment options.¹

Those who retire from work may find they can nap more throughout the day. If that is the case with you, your doctor may lower your dose of narcolepsy medicine. Your doctor could also lower the doses of these medicines if you have confusion or are physically unstable.¹

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Ferret Member
<inline-mention username="CommunityMember172" user-id="4586484"/> Totally agree! 73 now and nothing has gotten better or changed. You just get better at living with N1 and learning to cope with it. Yay for seeing that you use cannabis oil. CBN is basically aged THC but CBD can dampen or cancel the effect of the THC. If you are taking the CBD for pain etc., I would suggest taking it separately. I take CBD at 6 am and 6 pm but the THC oil (Afghani) just before bed at 11 pm. The CBD helps with the aches and pains of getting older and the THC eliminates REM for more deep rejuvenating sleep and also helps to eliminate cataplexy. Hoping for feedback from you. 
1. CommunityMember172 Member
 <inline-mention username="Ferret" user-id="9901370"/> I get a Canadian medical grade oil that specifically formulated for sleep; thc/cbd/cbn, 1:1:2. When I 1st started with thc it didn’t have the cbd or cbn; haven’t read anywhere about it reducing effect of thc and certainly haven’t noticed it! I started taking Baclofen before adding cannabis which is what finally helped my sleep construction so I wasn’t spending most of my nights in REM; I did that for the 1st 40 yrs of N1 and am SO glad I no longer have to deal with anymore as it was exhausting!! Glad you find thc helps reduce REM😀. Cbd definitely helps with the arthritis especially in my hips and CBN has practically eliminated sleep inertia in mornings (likely caused by Baclofen).
2. Ferret Member
 <inline-mention username="CommunityMember172" user-id="4586484"/> Thank you so much for your feedback! Greatly appreciated!
leiterportillo88 Member
I found that with each of my pregnancies, (5 and a miscarriage) the narcolepsy got worse after each one. I had to completely go off my medications while pregnant also.
1. Lori.Foster Community Admin
 Those must have been some difficult pregnancies, <inline-mention username="leiterportillo88" user-id="7000446"/>, especially with the later children when you had older ones to care for. I am so sorry about your miscarriage. Did you have much support during your pregnancies? Wishing you the best. - Lori (Team Member)
CommunityMember172 Member
Not sure “balancing out” describes anything close to what happens as we age. I was able to correct my sleep construction (cuz pharma wasn’t invented yet for N1) until 7 years ago(diagnosed in 1975) and frankly my issues that are likely due to 40+ years of sleep deprivation are now the ones I have the most problems with likely cuz they’re newer!!! Even saying that classic N1 symptoms “balance out” as we age is incorrect; we learn that with pharma and lifestyle changes we can “maybe” deal with our N1 symptoms but again “balancing out” is definitely not what I’d call it more like we just get used to dealing with N on a daily basis🤷‍♀️🤷‍♀️
1. CommunityMember172 Member
 <inline-mention username="Lori.Foster" user-id="8451727"/> Baclofen and cannabis oil(thc/cbd/cbn) for sleep, currently weening myself off annafranil that I’ve taken for 40+ years, half dose(75mg) of Sunosi. It’s my best combo since diagnosis!! Tried many; dex for 1st 10 years wrecked my gut and mood swings were terrible so quit that and drank ALOT of coffee for many years. Clonazepam for about 15 that in hindsight maybe was more harm than help and quetiapine for about 10 years after. Grew tolerance to all. I’m a firm believer oxybates should be 1st thing tried not last though only cuz I didn’t have opportunity when it would of best helped. I slept through high school and any other secondary education tried and jumped from job to job my entire life🙁. I’m VERY fortunate to have parents(father now deceased) that knew I’d likely need financial help both along the way and especially as I got older(now 61) so they planned for it; most do not🙁
2. Lori.Foster Community Admin
 I am glad you had the support of your parents well into adulthood, <inline-mention username="CommunityMember172" user-id="4586484"/>. So many people struggle with trying to get their family members to understand. How awesome that you had your parents to lean on when you needed them. I hope your current treatment plan continues to be effective and that, in the years to come, researchers come up with something even better. Wishing you the best. - Lori (Team Member)
revphil Member
Looking back, I see things now, potential warning signs, that I wish I had known about many years ago. This is not just for Narcolepsy, but a number of other sleep disorders and neurological problems also.
1. Kristin Schwoebel Community Admin
 Yes it is easy to see the signs once you know what to look for <inline-mention user-id="4122216" username="revphil"/> , it is very hard at the moment though! We hope by bringing awareness it will make narcolepsy as well as other sleep disorders much easier for healthcare providers to diagnose. Warmly, Kristin (Narcolepsy.Sleep-Disorders.net Team Member)