A condition like narcolepsy is really hard to treat. Stemming from a lack of hypocretin protein, or being connected to genetic predisposition, the lack of knowledge on narcolepsy doesn’t help the case. This neurological sleep disorder is one of the most mysterious and most interesting sleep conditions. It causes excessive daytime sleepiness, cataplexy, sleep paralysis and hallucinations. The list of other symptoms is also long, and the effects narcolepsy has on one’s life are almost impressive. Narcolepsy is a chronic sleep disorder that makes people fall asleep at any time or any place. Just imagine how dangerous it might be to fall asleep behind the wheel, for example. The cataplexy, caused by narcolepsy, makes your muscles so weak, you can barely stand. Many people with cataplexy experience falling down, not being able to move any of their limbs. And, to add the cherry on top, narcolepsy can also cause insomnia. Excessive sleepiness during the day, inability to sleep at all at night; narcolepsy really is a tough one.
However, the medical community has managed to get a grip on this disease and finally look into its causes, symptoms and possible treatment options. Even though the current research and treatment options are imperfect, this life-long, disabling disease can be put under control. Thanks to the current treatment, narcolepsy patients regain 80% of function, combining lifestyle and behavior changes with medication. In the following paragraphs, therefore, we will look at the treatment and medication options.
The objective of all the narcolepsy treatment options is to optimize the control of narcolepsy symptoms and enable narcolepsy patients to have a normal personal and professional life. The treatment options are focused on the improvement of excessive daytime sleepiness, cataplexy and cataplectic attacks as well as insomnia, sleep paralysis and hallucinations. Because narcolepsy is a chronic, life-long disease, it is important to align each treatment with the possible side effects. The medication a patient receives is something they’ll be taking for the rest of their life so it is important to be aware of possible complications.
Over the past decade, researches have had some groundbreaking discoveries when it comes to narcolepsy treatment, which are described below.
Behavioral Changes and Approach to Treatment
Let’s be honest; it can take forever to get diagnosed with narcolepsy. A patient must undergo numerous relevant tests, and even then might not be diagnosed properly. Furthermore, once finally diagnosed with narcolepsy, it can be hard to get a grip on one’s life and continue living normally. All of this causes incredible frustration in narcolepsy patients. In particularly young patients, this frustration can quickly turn into depression and anxiety. In order to prevent that from happening, the U.S. National Sleep Foundation and Narcolepsy Network advise narcolepsy patients to join support groups. These group meetings can help narcolepsy patients come to terms with the disease they have. It can also provide a completely new perspective on their life with narcolepsy, and help patients manage the disease not only physically, but also mentally.
Related: Causes of Narcolepsy
Increasing Histamine Signaling
Studies have shown that the most current narcolepsy treatment options rely on increasing histamine; a brain chemical responsible for improving alertness. Histamine levels are usually kept low, through the histamine H3 receptor. However, there have been discoveries in the compounds that actually block the histamine H3 receptor. This, in turn, allows the histamine levels to rise. The pharmacological companies believe that this new histamine H3 receptor blocker will promote the levels of dopamine as well as other neurotransmitters which enable wakefulness. According to one study, the histamine H3 receptor blockers have improved wakefulness in narcoleptic animals, like mice, as well as in human narcolepsy cases. This histamine H3 receptor blocker still needs to be approved for clinical use.
The pharmacological treatment for narcolepsy divides into several groups of medication in accordance with each of the symptoms.
For narcolepsy with cataplexy
- Sodium Oxybate – approved by the FDA, it is a treatment used for treating cataplexy and cataplectic attacks. It affects the central nervous system and acts as a sedative, promoting sleep and acting as an anti-cataplexy medication. It is relatively unknown how sodium oxybate actually causes all this change. It is believed that sodium oxybate operates through a mechanism that consolidates REM sleep and interacts with the promotion of dopamine. Sodium oxybate is usually taken at bedtime when the patient is already in bed. This helps avoid falls and immovability caused by cataplectic attacks. The effectiveness of sodium oxybate is gradual, but positive effects and improvement have been reported. After 12 months of therapy, there is a visible efficiency in cataplexy, as well as daytime sleepiness. Unless the patient is pregnant, sodium oxybate does not show any negative side effects, and it is supposed to be taken in the recommended dosage; something that is consulted with a medical professional.
- Atomoxetine – this treatment is also used in the treatment of narcolepsy with cataplexy. It is usually used with narcoleptic children, but also shows positive effects on improving cataplexy and excessive daytime sleepiness in adults. However, in the long run, it is less effective than sodium oxybate in teenagers and adults.
For excessive daytime sleepiness
- Modafinil – this medication is the main excessive daytime sleepiness medication treatment. Modafinil is a drug that promotes wakefulness by activating wake-generating areas and sites in the hypothalamus. It has been tested with narcoleptic dogs and mice and has proven successful. Modafinil has managed to increase the levels of dopamine, which is necessary for the wake-promoting action of this medication. In human cases, modafinil has shown positive effects on excessive daytime sleepiness with almost no negative side effects. There were, nevertheless, cases of dry mouth, nervousness, and nausea. Therefore the patient’s blood pressure should be checked before taking this medication. Modafinil can also help with nighttime sleep irregularities and cataplexy.
- Armodafilin – approved by the FDA, armodafilin is also used for the treatment of the excessive daytime sleepiness in narcolepsy. The medication improves the daytime sleepiness throughout the day and shows longer improvements than modafinil. There can, however, be some side effects with this medication, including nausea, dizziness, headaches, and insomnia.
For narcolepsy sleep paralysis and hallucinations
- Serotonin-Norepinephrine Reuptake Inhibitors – these types of medication have shown to be effective antidepressants when it comes to the treatment of cataplexy, sleep paralysis and hallucinations. The representative medication from this group is venlafaxine XR, which is a serotonin and dopamine inhibitor. It is used for both, children and adults and has shown excellent results in improving nighttime sleep and fewer hallucinations during the sleep-wake episodes. These inhibitors, however, shouldn’t be used by pregnant women, as they can cause serious respiratory and feeding side effects.
One of the causes of narcolepsy with cataplexy has proven to be a lack of hypocretin. Hypocretin is responsible for signaling the brain when it is supposed to stay awake and when to fall asleep. However, in narcoleptic patients, the levels of hypocretin are almost non-existent, which leads to sleep and cataplectic attacks. Therefore, one of the treatments options is the possible restoration of hypocretin signaling or the increase of hypocretin producing brain cells.
Some of the studies have looked into the possibility of somehow getting hypocretin into the brain, or producing a drug that can mimic its effects. That would be one approach. The other approach is the complete restoration of hypocretin production using gene therapy. In this case, other brain cells would work together to help produce hypocretin. This way these cells would make up for the loss of the hypocretin-producing neurons. The approach has actually been tested and proven successful in the treatment of cataplexy and excessive daytime sleepiness. The study was conducted on narcoleptic animals, mice to be exact, but nevertheless showed incredible improvement in finding the treatment for narcolepsy in humans.
The third approach to hypocretin-based treatment relies on the stem cell technique. This technique would require taking the patient’s brain cells and turning them into hypocretin-producing brain cells. The technique would be done in a laboratory, and in theory, could help the brain restore the hypocretin signaling. This sure sounds like it could definitely work, but this approach requires more testing and studying. It will take more research and experimenting to make all of these approaches completely safe for use and efficient for the actual treatment of narcolepsy.
Other Coping Strategies
There are also a few ways to manage narcolepsy without medication. These ways might not be as effective but can definitely introduce some positive change in the life of patients with narcolepsy. According to the National Sleep Foundation, here are some coping strategies;
- Patients with narcolepsy can make sure to let their friends, colleagues, co-workers and other acquaintances know about their condition. It would be very useful to educate them about narcolepsy and let them know the possible dangerous effects this condition can have on your health, any time and any place.
- Patients with narcolepsy should be aware that taking care of themselves is always the priority. Narcolepsy can occur whenever, therefore, social engagements and plans should be as flexible as possible. It is always more important to look out for your symptoms and health effects, and it should also be for your friends and family.
- Patients with narcolepsy could try staying away from the things that trigger their sleep and cataplectic attacks. For example, strong or intense emotions (laughter, anger, fear) can be potential triggers for narcolepsy. Therefore, these people should do everything to manage stress, causes of fear and anger, and when it is time to laugh, control their excitement.
- Patients with narcolepsy should also stay away from caffeinated drinks, especially a few hours before going to bed. Caffeine promotes wakefulness, alertness and makes you feel like you’re on the edge. This could trigger nighttime disrupted sleep. Also, before bedtime, narcoleptic patients should stay ways from phones, computers, and television. The light from these devices promotes wakefulness and decreases melatonin levels. It also increases alertness and make sit hard to fall asleep later on.
- Patients with narcolepsy should stay away from operating heavy machinery or driving cars. Almost half of the diagnosed narcoleptic patients have fallen asleep behind the wheel. It is extremely dangerous to risk falling asleep in such serious situations.
- Patients with narcolepsy should consider the option of a service dog. There have been studies showing that dogs can recognize a distinct odor in patients with narcolepsy. When the narcolepsy symptoms are kicking in, like sleep or cataleptic attack, the service dog can recognize it prior to happening. The dog will let the owner know so that they can take measure; sit or lay down, stop the narcolepsy triggers, etc. Service dogs are also trained to remind their owners when it’s time for medication. The narcolepsy service dogs are not high in energy, but always alert and observant of their owner’s behavior.
Narcolepsy is surely a life-changing disease. The fact that it is chronic and life-long doesn’t help the case of its treatment at all. However, compared to decades ago, we are now seeing innovative studies and research helping people develop new medication. It shouldn’t take long before we’re presented with a direct narcolepsy treatment which would definitely help so many people. Until then, there is medication that can help you deal with the symptoms quite effectively. More importantly, there are also ways one can improve their day-to-day struggles with narcolepsy by letting people know about the disease, and avoiding narcolepsy triggers. Overall, narcolepsy can be managed. It takes a lot of hard work, but it is doable. Hopefully, the future will bring a new medication or treatment options that will completely ease the life with narcolepsy.