The day is typically a time for you to be alert. But with narcolepsy, you can get very sleepy. This sleep disorder comes with excessive daytime sleepiness (EDS) and can feel like a "sleep attack."
There are two types of narcolepsy, type 1 and 2. But only 20% of people with narcolepsy get type 1. With this condition, you may get short episodes of sudden muscle weakness and have low amounts of orexin.
Orexin (hypocretin) is the brain chemical that controls your sleep-wake cycle. And if your brain doesn't get enough, it can be harder to stay awake during the day.
Cataplexy is condition specific to type 1 narcolepsy. Your jaw may drop on its own for short periods. Or you may suddenly fall to the ground without warning – that's cataplexy. Strong emotions can trigger this sudden muscle weakness.
Living with type 1 can be a challenge because normal daily life can trigger your cataplexy. Strong positive or negative emotions can bring on attacks. But with the right treatment plan, you can manage symptoms and lead a full, active life.
Narcolepsy type 1 is lifelong and can change over time. So it's important to check in regularly with your medical team. These visits help adjust your care plan and get the latest treatments.
Why Regular Checkups Matter with Narcolepsy Type 1
Stay proactive to make a big difference in how you feel. Even small changes can help you function a little better each day. During your checkups, your doctor may:
- Adjust your medication
- Add a new therapy
- Suggest a lifestyle change
Not getting enough sleep can impact your:
- Work
- School
- Relationships
- Mental health
The right treatment plan can help you function better during the daytime. But keep in mind that what works at first may not work forever.
Even simple lifestyle changes can require a treatment tweak. Past treatment plans that worked well may no longer give you the same relief today.
Regular check-ins can help you stay ahead of your sleep symptoms. You and your doctor can fine-tune your medications and explore new options. And you can address side effects before they become a problem.
How Is Narcolepsy Type 1 Treated?
Narcolepsy type 1 is treated with good sleep hygiene and daytime naps. Napping can help you feel more alert. You'll usually take one or two 20-minute naps during the afternoon.
Your doctor may also give you a list of medicines to avoid. These medications can make you tired or sleepy during the day. But a good social support network and driving safely are key parts of a good treatment plan, too.
What medicines can help with narcolepsy type 1?
Your age, symptoms, and other medical conditions can impact which narcolepsy medicine your doctor prescribes.
If your narcolepsy symptoms persist or get worse, your doctor may add or switch you to other types of treatments. Your doctor may also add amphetamines or methylphenidate to other narcolepsy medications.
You may get more checkups at first if you're trying medicine for the first time. This can help your doctor make any medication adjustments.
Adjusting your treatment plan
Your doctor can monitor any changes and see how the medicine is working at your checkups. It can take a few weeks before the medicine works and treats your symptoms. And sometimes, your body gets used to the medication over time.
Your medicine may not work as well. When this happens, your doctor may suggest that you:
- Take short breaks from the medication (for example, not take it on weekends) to help it work again.
- Add a medication, or try another one.
- Change your dose.
If you do change your medication, your doctor will likely do it step by step. They'll add the new medications one at a time.
Always talk to your doctor before you change or stop a treatment. They can tell you what symptoms to look for and if any of your new medicines are working.
Signs That It Might Be Time for a Treatment Change
As you check in, your doctor will ask you about your condition and other medical problems. These signs could mean it's time to change your treatment.
Your doctor wants to help you find a treatment – to help you thrive, not just survive. To help, be open and honest about your quality of life. Tell your doctor about how your narcolepsy impacts your daily activities.
Sometimes, a small adjustment can get you to a better place. When you talk to your doctor, you can ask:
- Should I take this with food or on an empty stomach?
- Is there a certain time of day I should take this?
- How much should I take each time?
- What should I do if I miss a dose?
- Should I avoid certain activities while on this medication?
Write these questions down and bring them with you to your next office visit. That way, you won't forget to ask.
When you take your meds as prescribed, it helps your doctor know how the treatment is working and if the medicine needs changing. Knowing what makes your symptoms worse can help.
Conditions That Can Make Symptoms Worse
Regular checkups also give your doctor a chance to screen you for other medical conditions. In fact, certain conditions can prevent your narcolepsy type 1 treatment from working. That's because some symptoms can keep you awake or interrupt sleep.
If you're dealing with narcolepsy and other medical conditions, seeking suport can help you manage.
Continued Support Through Your Care Team
Your doctor is your go-to source for medication, narcolepsy monitoring, lifestyle changes, and connecting you to support groups.
Pairing healthy habits with your treatment can help you feel better day to day. Your doctor may suggest you try habits like these:
- Keep a regular sleep-wake schedule, even on weekends.
- Create a calm bedtime routine and lower your stress levels.
- Build in short, strategic naps during your day to boost alertness.
- Get regular moderate exercise.
- Limit caffeine and alcohol, especially close to bedtime.
- Put screens to sleep well before you do – light can disrupt your sleep-wake cycle.
Your sleep specialist can also point you to support groups. It can help to hear from other people living with the condition. They can also provide emotional support, practical tips, and refer you to other doctors.
Setting and Checking Treatment Goals
Good treatment plans have clear goals. Together with your doctor, you can set specific, measurable targets that you can put into action.
Always go over your goals with your doctor. Keep a log of your symptoms, too. Everyfew months, you can review challenges and successes at your checkup.
You can log your symptoms and medicine side effects with paper and pen. Or you can use an app to keep tabs for you. The log can help your doctor see sleep and symptom patterns over time.
Don't wait until you have a problem to see your doctor. Ask them how often they'd like to see you for check-ins. And find out which symptoms to track.
That way, you can call about any signs or touch base if:
- Symptoms get worse.
- Side effects bother you.
- Your life has a major change, like a new job or family stress.
- A new medication or treatment becomes available.
- You just feel like something isn't right.
You can also ask your doctor about clinical trials. These research studies constantly evolve and use new treatments not yet available. Let your doctor know you're interested in clinical trials. They can help you find the best clinical trial for your specific situation.
Show Sources
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SOURCES:
Cleveland Clinic: "Cataplexy," "Narcolepsy."
Harvard Medical School Division of Sleep Medicine: "Changes Across the Lifespan," "Narcolepsy."
Hypersomnia Foundation: "Medicines for idiopathic hypersomnia and narcolepsy," "Finding and working with doctors who treat hypersomnias," "Quality of life tips."
Tampa General Hospital (TGH) Pulmonary Care & Sleep Institute (PCSI): "Narcolepsy: Symptoms and Management."
University of Michigan: "New Medicines: Questions to Ask Your Doctor."
UpToDate: "Clinical features and diagnosis of narcolepsy in adults," "Treatment of narcolepsy in adults."
