Narcolepsy type 1 affects your brain's ability to control your sleep and wake cycles. This lifelong condition disrupts your sleep at night, and you may feel extremely sleepy during the day.
Some people with narcolepsy type 1 can suddenly lose muscle control. It's called cataplexy, and it can happen when you laugh, get excited, or feel strong emotions.
Current treatments can help you manage your narcolepsy symptoms. But these medications don't fix the main problem – a loss of a brain chemical called orexin (also called hypocretin).
Orexin helps keep you awake and keeps your brain from jumping into sleep at the wrong times. New treatments aim to boost how orexin works in your brain.
Current Treatments for Narcolepsy Type 1
Narcolepsy type 1 doesn't have a cure, but treatments can help make it easier to live with the condition. You and your doctor will work together to lower your daytime sleepiness.
Stimulants for narcolepsy type 1
These medicines work on your central nervous system (CNS) to help you stay awake during the day. Your brain is part of your CNS and controls when you fall asleep.
Stimulants can keep your brain active, although some can be habit-forming. You and your doctor will discuss the best option for your health.
Antidepressants for narcolepsy treatment
Sleep allows your brain to rest and organize information. You may not always remember, but your brain is still active during sleep, just less so.
Sleep has two stages, rapid eye movement (REM) sleep and non-REM sleep. REM happens more quickly than it should when you have narcolepsy.
Some medications, like serotonin and norepinephrine reuptake inhibitors (SNRIs) and selective serotonin reuptake inhibitors (SSRIs), can hold off REM sleep.
Tricyclic antidepressants for cataplexy
Some older antidepressants can treat cataplexy. Your doctor may use these medicines to help your symptoms if other medications aren't working.
Oxybate salts to treat narcolepsy and cataplexy
The salts act as a stimulant but can take several weeks to work. The medicine can improve nighttime sleep, control daytime sleepiness, and treat cataplexy.
These treatments help with some symptoms for narcolepsy type 1 but not the loss of orexin. And without replacing orexin, you'll likely stay awake 70% to 80% of the time using stimulants.
Promising Treatments in the Pipeline
Orexin comes from your hypothalamus – the part of your brain that controls appetite, sleep, and arousal. The brain chemical turns on arousal. That's the wakeful parts of your brain to keep you alert. It can help keep your sleep-wake cycle stable, too.
Orexin prevents your brain from switching too quickly between sleep and wake states. With narcolepsy type 1, your hypothalamus makes less orexin. And this can cause too much (excessive) daytime sleepiness and cataplexy.
That's because your brain can't control moving from the wake state into the sleep phase the way it should. Newer treatments aim to replace, mimic, or boost orexin activity inside your brain.
Orexin B receptor agonists
Orexin B receptor agonists can mimic (act like) the brain chemical, orexin. The medicine attaches to and turns on orexin receptors.
Receptors are like a lock, and the medicine is like a key. When the medicine turns the "lock," it sends a signal through the brain's wakefulness network.
Just like orexin, the medicine can help you feel more awake, alert, and less likely to have cataplexy attacks.
Oveporexton (TAK‑861) is a newer medicine being studied in clinical trials. Recent studies show that oveporexton may help you stay awake longer during the day with fewer cataplexy attacks. And the medicine helped some people stay awake for normal amounts of time.
But like all medication, oveporexton can come with side effects such as:
- Trouble sleeping (insomnia)
- Needing to pee more often
- Headaches
Although common, the side effects were usually mild and didn't last long. Researchers are still studying oveporexton to make sure it works and is safe.
Histamine H3 receptor inverse agonists
A histamine H3 receptor inverse agonist is a medicine that attaches to histamine receptors. The medicine to treat narcolepsy type 1 is called samelisant.
Samelisant helps the brain release histamine, another chemical in your brain to help keep you awake. Like orexin, histamine can also work to lower sleepiness and improve your focus.
In early studies, people who took samelisant said they felt less sleepy and had more energy during the day. Some people also had fewer cataplexy attacks.
Common side effects included:
- Trouble sleeping
- Vivid dreams
- Nausea
- Feeling warm or flushed
Samelisant is still being studied to figure out the best dose. Scientists are doing more studies to check how well it works and if it's safe.
Immunotherapy
Your immune system may play a role in narcolepsy type 1. About 90 out of 100 people with narcolepsy type 1 have a genetic marker called HLA DQB1*0602.
The genetic marker may trigger autoimmune disease after an infection like the flu or strep throat. Normally, your immune system can fight off infections in your brain with T cells. But with narcolepsy type 1, your immune system may be overactive and harm the brain cells that make orexin.
Other things may also impact your immune system and sleep:
- Changes to your environment that switch off genes
- Imbalances in your gut germs (bacteria)
A few small studies use immunotherapy to treat narcolepsy type 1:
- IV (in your vein) immunoglobulins
- Steroids
- Rituximab and alemtuzumab (treats some autoimmune conditions and cancer)
Although some people said their symptoms improved, others did not. Larger studies are needed before experts can know for sure if these treatments can help ease narcolepsy symptoms.
Improvements in Current Treatments
Sodium oxybate works to lower your daytime sleepiness and lessen cataplexy attacks. But like all medicines, the salts can have some downsides.
The main problem is taking the medicine twice every night. One of those times is in the middle of the night – it can disrupt your sleep.
Talk to your doctor about the best narcolepsy type 1 treatment for your health. They can help you find out which treatment is covered by your insurance.
Ask About Clinical Trials
As you wait for new treatments to become available, you can find out more from your doctor about clinical trials. Clinical trials are the way researchers find out if a drug works and is safe.
If you're thinking about a clinical trial for narcolepsy type 1, a great first step is to talk to your doctor. You can start by saying something like, "I've heard there are new treatments being tested for narcolepsy – do you know of any clinical trials I might qualify for?"
Your doctor may be able to connect you with local or national research centers. Or they can refer you to a sleep specialist who has access to clinical trial networks. It's helpful to ask about:
- Your risks and benefits of joining a clinical trial
- What kind of time commitment or how much time it will take
- How much travel the trial involves
- Whether the clinical trial will impact or change your current medications
You can also search for trials yourself at ClinicalTrials.gov. Bring the information to your doctor so you can review the clinical trial information together to see which one is the best fit for your health.
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Cureus: "Tetrad of Narcolepsy Type 1: Treatment and Management."
Mayo Clinic: "Narcolepsy."
National Institute of Neurological Disorders and Stroke: "Narcolepsy."
Peptides: "The present and future of synthetic orexin receptor agonists."
ACS Medicinal Chemistry Letters Journal: "Orexin Receptor Agonists as Possible Treatment for Narcolepsy and Idiopathic Hypersomnia."
The New England Journal of Medicine: "Oveporexton, an Oral Orexin Receptor 2-Selective Agonist, in Narcolepsy Type 1."
UpToDate: "Clinical features and diagnosis of narcolepsy in adults," "Treatment of narcolepsy in adults."
Nationwide Children's: "What Does it Take to Get a Medication Approved Through the FDA?"
Neurology: "Samelisant (SUVN-G3031) – Topline Results from the Phase-2 Proof-of-Concept Double-blind, Placebo-controlled Study in Patients with Narcolepsy (P10-9.002)."
NeurologyLive: "Samelisant Significantly Reduces Excessive Daytime Sleepiness in Phase 2 Narcolepsy Study," "Phase 2 Study to Test Therapeutic Potential of Samelisant for Narcolepsy Type 1."
Sleep Medicine: "Connecting the dots: An updated review of the role of autoimmunity in narcolepsy and emerging immunotherapeutic approaches."
Harvard Medical School Division of Sleep Medicine: "The Science of Narcolepsy."
Therapeutic Advances in Neurological Disorders: "Recent advances in treatment for narcolepsy."
Nature and Science of Sleep: "Calcium, Magnesium, Potassium, and Sodium Oxybates Oral Solution: A Lower-Sodium Alternative for Cataplexy or Excessive Daytime Sleepiness Associated with Narcolepsy."
American Academy of Sleep Medicine: "FDA approves Lumryz for pediatric patients with narcolepsy."
National Institute on Aging: "What Are Clinical Trials and Studies?"
CNS Drugs: "Therapeutic Use of γ‑Hydroxybutyrate: History and Clinical Utility of Oxybates and Considerations of Once‑ and Twice‑Nightly Dosing in Narcolepsy."
