Newly diagnosed with narcolepsy: Does it get worse over time?
Fact-checked by After a new narcolepsy diagnosis, its normal to worry about whether your sleep problems are going to keep getting worse. It’s important to know that while you may be living with narcolepsy long-term, it is not a progressive disease — it does not steadily get worse over time for most people.
Still, every person experiences the long-term effects of narcolepsy differently, and you might notice that your symptoms feel different — and that your treatment needs to be changed — as you move through various life stages. It’s important to communicate frequently and clearly with your healthcare team to ensure your treatment plan is always suited to your needs.
How narcolepsy symptoms can change over time
The symptoms of narcolepsy can emerge at any age, but typically start between childhood and young adulthood, continuing throughout life. Narcolepsy symptoms are unlikely to go away entirely on their own, but it is not a progressive disease; that is, its symptoms do not continuously get worse over time.
That doesn’t mean your narcolepsy symptoms will never change. While there is no predictable pattern of narcolepsy progression, some people notice their symptoms ease as they get older, while for others, symptoms get worse, stay stable, or fluctuate.
Even if your symptoms remain relatively consistent, changing life circumstances may mean you’ll need to adjust your usual treatment or coping techniques. New school, work, or family obligations can mean that the same symptoms have different impacts on your daily life and require new management strategies.
With effective care and management, the prognosis of narcolepsy is typically good, and the disease does not usually affect life expectancy.
What to expect in your first year
In the first year of living with narcolepsy, it may feel like your symptoms are unstable as you learn to adjust to them and find the right treatment plan.
Your first symptom, which may have led to your diagnosis, was probably excessive daytime sleepiness (EDS). If it hasn’t developed already, you might start to experience cataplexy — sudden episodes of lost muscle tone that occur in people with narcolepsy type 1 — in the coming months. Other narcolepsy symptoms might also start to emerge or become more noticeable.
In this first year, you’ll also be working closely with your care team to come up with a treatment plan to manage your narcolepsy. This may involve a trial-and-error process to find the right medications.
You’ll also still be adjusting your daily routines and making lifestyle changes that make narcolepsy easier to manage. What that looks like is different for everyone, and it’s normal for symptoms to fluctuate while you find what works best.
Can excessive daytime sleepiness get worse with age?
It is not uncommon for EDS to feel worse in the first few months or years, but then stabilize through adulthood. This early symptom instability is often because your treatment plan is still being optimized, not necessarily that the disease itself is getting worse.
However, this can be highly variable. Some people report a decrease in EDS as they age, while others report that it gets worse. Worsening EDS could be related to new medications, the development of other health conditions, or naturally occurring changes in sleep patterns.
You might notice that even if it is not necessarily better or worse, you or your child’s daytime sleepiness manifests differently over time. In children with narcolepsy, EDS can sometimes look like a behavioral issue, including inattention, irritability, or hyperactivity, or automatic behaviors without awareness. In adulthood, daytime sleepiness is more likely to cause drowsiness, difficulty staying alert, or unintentional lapses into sleep.
How cataplexy may change over the years
Data related to cataplexy vary widely. Some studies find that cataplexy attacks ease with age, while others find no difference. While cataplexy doesn’t usually get worse over time, it can sometimes appear years after other symptoms emerge.
Like daytime sleepiness, cataplexy can manifest differently in different age groups:
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| Children | Adults |
|---|---|
| Often have prominent facial changes, such as drooping eyelids or unusual facial movements. Whole-body weakness can occur. | May have weakness in the face or body. Severe episodes can cause whole-body collapse. |
| Symptoms may seem to last longer | Typically very brief, lasting seconds to minutes |
| A clear emotional trigger may be harder to identify | Often triggered by emotions |
Certain medications that are more commonly used in older people can exacerbate cataplexy, including:
- alpha blockers: used for high blood pressure and enlarged prostate
- D2 agonists: used for Parkinson’s disease, restless leg syndrome, and certain hormone disorders
If your cataplexy gets worse as you get older, it could be related to a medication you are using. Make sure to talk to your sleep specialist before changing any medications.
Why stress can worsen symptoms
Fluctuations in stress levels throughout life can affect narcolepsy symptoms. Some people may experience worsening daytime sleepiness and/or cataplexy during stressful life events.
Stress destabilizes sleep cycles and can make it even more difficult to sleep at night. This fragmented nighttime sleep can, in turn, cause more sleepiness during the day. Stress may also amplify emotional reactions, which can trigger cataplexy episodes for some people. Other symptoms, including hallucinations, may also get worse in times of stress.
Worsening narcolepsy symptoms may, in turn, increase stress, leading to a self-perpetuating loop. If you think stress might be impacting your ability to manage narcolepsy, talk with your care team about stress-management techniques.
How other sleep disorders can affect symptoms
Other sleep disorders can coexist with narcolepsy and exacerbate its symptoms.
A common one is obstructive sleep apnea, in which airway blockage causes breathing to repeatedly pause and restart throughout the night. This is more likely to develop in adulthood than in childhood and can contribute to symptom worsening with age for some people.
It can be difficult to diagnose other sleep disorders in people with narcolepsy, and vice versa, because of the symptom overlap. If you notice your narcolepsy symptoms are getting worse without an obvious cause, talk with your doctor about whether a sleep study to look for new problems is appropriate.
Can treatment needs change over time?
When living with narcolepsy long-term, changes in narcolepsy symptoms, overall health, and life circumstances may mean that your treatment needs will change over time. For example:
- finding the right medication and dose after a narcolepsy diagnosis may take several months and a number of adjustments
- younger children may need different medications, doses or treatment schedules because of their smaller size and higher metabolism
- life transitions, including moving between school, jobs, parenthood, and retirement, can alter daily activity patterns in ways that affect symptoms and require medication adjustments
- pregnancy and breastfeeding may influence which medications are safe to take
- age-related medical conditions may require narcolepsy medication adjustments or discontinuation
Some narcolepsy medications can cause serious side effects if they are suddenly discontinued, so it is important to always consult with your care team before making any changes to your treatment plan.
Aging with narcolepsy: What may change
Much remains unknown about how narcolepsy evolves in older adults, but there are certain age-related factors that can influence symptoms and how they need to be treated:
- As you age, it becomes more likely that you’ll develop medical conditions such as heart disease that make certain narcolepsy medications unsafe.
- Age-related physical and mental changes, like confusion or walking instability, may mean having to make extra lifestyle changes or medication adjustments to stay safe.
- Sleep cycles naturally change with age, which could influence narcolepsy symptoms.
It’s important to stay in contact with your narcolepsy care team as you get older. Together, you may need to periodically reassess treatment priorities and make adjustments that maximize your quality of life at any age.
Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
