Cataplexy is a rare disorder in which a person loses muscle control when experiencing strong emotions (also one of the symptoms of narcolepsy). Those who suffer from cataplexy can feel isolated as they tend to withdraw from emotionally charged situations in order to manage their symptoms. While cataplexy can have a large impact on a person’s life, there are resources and treatments available to help those struggling to manage their illness.
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Cataplexy: What Does It Mean?
Cataplexy is a partial or generalized loss of muscle tone or control that is triggered by emotion. It is most often related to a positive, strong emotional response such as excitement or laughter, however, it can be associated with other powerful emotions like anger or stress.
Cataplexy affects people to different degrees. Some people experience partial paralysis of their face, causing their eyelids to droop or their mouth to hang open. Others have full body weakness or paralysis that causes them to collapse. These episodes can last a few seconds to several minutes, but the person remains awake during the episode and experiences an instant recovery when the episode resolves.
Stats: How Many Suffer from this Disorder?
Cataplexy occurs in some children and adults with narcolepsy, and more rarely can be associated with other disorders. While it is not known how many people suffer from cataplexy, narcolepsy is thought to affect as many as 200,000 people in the United States. Of those people with narcolepsy, an estimated 8 in 10 children and 3 in 10 adults have cataplexy.
What Causes Cataplexy?
Cataplexy is related to a reduced amount of a neurotransmitter called hypocretin in the brain. Hypocretin is a neurotransmitter that stimulates attentiveness during the daytime. It does this by increasing the production and release of other neurotransmitters that promote focus and alertness, including serotonin, norepinephrine, and dopamine.
In addition to promoting wakefulness, they also suppress the systems in the body that cause paralysis during REM sleep. When serotonin, norepinephrine, and dopamine, levels are reduced, this paralysis can occur more readily during daytime hours.
Researchers have spent a lot of time trying to determine what causes these lower levels of hypocretin in some individuals. It is thought that it is caused by an autoimmune disorder in which the patient’s own immune system attacks the neurons that produce hypocretin. It is currently unclear what triggers this immune response.
Testing: What are the Diagnostic Criteria Per the DSM 5?
There are no diagnostic criteria provided for cataplexy alone. Instead, the DSM-5 lists cataplexy as one of the criteria for diagnosing narcolepsy. Their diagnostic criteria for narcolepsy includes:
Excessive daytime sleepiness in association with any one of the following:
- CSF hypocretin deficiency
- REM sleep latency ≤15 minutes on nocturnal polysomnography (PSG
- Mean sleep latency ≤8 minutes on multiple sleep latency testing (MSLT) with ≥2 sleep-onset REM-sleep periods (SOREMPs).
Without specific diagnostic criteria for cataplexy, it can be challenging to diagnose patients with this condition.
Cataplexy and Other Conditions
Cataplexy vs Narcolepsy
Cataplexy is most often seen in patients who are diagnosed with narcolepsy. They are both related to a disturbance in the sleep-wake cycle. However, these terms are not interchangeable.
Narcolepsy is a disorder caused by an inappropriate sleep-wake cycle that causes people to experience excessive sleepiness during the day and disturbed sleep at night. There are many symptoms associated with narcolepsy; the most common symptom is excessive daytime sleepiness. Other symptoms include sleep paralysis, visual hallucinations, and of course, cataplexy.
Cataplexy is the specific symptom defined by an involuntary loss of muscle control due to an emotional stimulus. Not all people with narcolepsy have cataplexy symptoms. Likewise, not all patients who suffer from cataplexy symptoms are diagnosed with narcolepsy. Rarely, other medical conditions including stroke, multiple sclerosis, antidepressant withdrawal, and genetic disorders can also be associated with symptoms of cataplexy.
Cataplexy vs Catatonia
While cataplexy and catatonia can present with similar symptoms, they are two very different conditions. People who suffer from cataplexy and catatonia can both have trouble with muscle movement or control, and they often have a lack of response to any external stimuli during their episodes.
The major difference between these conditions relates to their origin. While cataplexy is typically a sleep cycle disorder, catatonia is unrelated to sleep. Instead, as seen in its DSM-5 diagnostic criteria, it is associated with a mood or psychiatric disorder. There are also more extensive symptoms that can occur with catatonia, such as agitation or violence and odd mannerisms, and these symptoms can last hour to days. Cataplexy, on the other hand, is most often associated with symptoms of muscle weakness and lasts seconds to minutes
Cataplexy vs Stroke
Cataplexy symptoms most often begin in the face with droopy eyelids, open mouths, or smile inhibition. It can also cause speech difficulty. This can be confusing for those who have never witnessed these episodes because these symptoms can appear to mimic the first signs of a stroke.
There are a few things that can help you differentiate cataplexy episodes from stroke symptoms. Stroke typically affects one side of the face and body more than the other, while cataplexy usually affects both sides the same. Stroke can also cause other symptoms, such as headache or blurred vision that are not seen in cataplexy. While issues in the brain cause both conditions, blood flow interruptions to the brain cause strokes while cataplexy is related to neurotransmitter levels.
If you are ever in doubt about your symptoms, you should always seek medical care to rule out a stroke.
Cataplexy and narcolepsy can be associated with other sleep disorders, such as insomnia or obstructive sleep apnea. Sleep studies can help diagnose these related disorders so appropriate treatment can be started. Sometimes treating these underlying sleep disorders can help manage cataplexy symptoms.
Cataplexy In Adults/Children
Cataplexy symptoms affect both children and adults, although symptoms can present differently between the two groups. Children with cataplexy often have facial symptoms termed “cataplectic facies”. Cataplectic facies symptoms include the mouth hanging open, eyelid drooping, and tongue protrusion. As children and young adults grow up, their cataplexy symptoms tend to become more traditional and may involve different muscle groups. In addition to differences in symptoms, the instigating events or emotional triggers can be harder to identify in children than adults. This can make diagnosis more difficult in children as they may not be able to identify the relationship between emotion and their episodes.
Example Case of Cataplexy
Dan is a 27-year old who attends the wedding of one of his old college roommates. During the reception, he is catching up with some of his friends. One of them shares a particularly funny memory, and Dan bursts into laughter along with the rest of the group. Almost immediately, his eyelids droop, his mouth drops open, and he hunches forward with his arms hanging toward the floor.
His friends stop laughing, concerned for him. They repeat his name while shaking his shoulders, but he will not respond. They get ready to call an ambulance when suddenly Dan stands upright and apologizes. He tells his friends he could hear them when they were saying his name, but he couldn’t get himself to move.
How to Deal/Coping With Cataplexy
The social and emotional impact of cataplexy is hard to understand, and it can be discouraging for those who suffer from this disorder. It can be hard to maintain a job, drive, or attend social events while dealing with these symptoms. Finding healthy coping strategies can be a key tool to successfully managing this condition.
Look out for These Complications/Risk Factors
If you or a loved one suffers from cataplexy, here are a few important things to remember:
- Collapsing can cause injury – be aware of your surroundings to avoid serious injury
- Skimping on sleep can lead to increased symptoms during the day – make sleep a priority and don’t be afraid to nap during the day
- Driving can be dangerous – clear this with your health care provider or therapist before getting behind the wheel
- Cataplexy is misunderstood and can be scary for those who don’t understand what is happening – educate friends and family about your condition
There are treatment options to help minimize symptoms and manage sleep difficulties for those with cataplexy.
Possible Medications for Cataplexy
Sodium oxybate is a medication approved by the FDA for use in cataplexy. It is thought to work by improving the quality of sleep you get at night. It can cause very deep sleep, so it is important to evaluate safety strategies in case you do not wake up to alarms or children and to avoid other sedating drugs like alcohol. Because of its side effects, it is often reserved for more severe cases of cataplexy.
Some antidepressants can be used for cataplexy because they increase levels of serotonin and norepinephrine. Talk with your health care provider about the best option for you based on the dosing and side effects of each medication. It is important to not stop taking these medications abruptly as this can cause rebound cataplexy that can continue for hours.
Home Remedies to help Cataplexy
Sleep plays an important role in managing symptoms. Making quality sleep a priority can help control symptoms. You can improve sleep quality by avoiding artificial light, such as from computer and phone screens, 30-60 minutes before bed and only using your bed for sleep. Alcohol and caffeine should be avoided as they can contribute to daytime sleepiness and nighttime wakefulness, respectfully. Napping a few times per day can also help you keep symptoms in control.
Living with Cataplexy
In addition to symptom management, it is important to maintain a strong relationship with your health care provider. It is also essential to surround yourself with a strong support group and seek help when you need it.
Insurance Coverage for Cataplexy
Behavioral health services and medication coverage varies with different insurance providers. Check with your insurance company to determine what services are covered and if there are any preferred providers in your area. In addition, evaluate your deductible and co-pay requirements to understand what your financial responsibility will be. If you do not have adequate coverage available, research options in your community for reduced-cost therapy options or medication assistance.
How to Find a Therapist
When you are ready to see a therapist, your health care provider can make a referral for you to the therapist of your choice. You may also be able to reach out to a therapist’s office to see if they are taking new patients. If your insurance company has any preferred providers, seeing those providers may help minimize costs
What Should I be Looking for in an LMHP?
When you are looking for an LMHP to help you cope with cataplexy, there are a few traits that will help ensure you receive excellent care.
If possible, find someone who has experience working with cataplexy and other sleep disorders. This can help you get faster symptom management and relief.
Look for someone who is compassionate about your frustrations. Some providers may not understand how cataplexy can impact your daily life, so look for someone who seems to understand how you feel.
You want to find someone you feel comfortable with. The more open you can be about your struggles and experiences, the better treatment plan you will receive.
Find an LMHP who has strong problem-solving skills. It can be challenging to work treatment strategies into your day, and having an LMHP who can come up with creative plans can be very useful.
Questions to Ask a Potential Therapist
When you are talking with a potential therapist, here are some questions you should consider asking them:
- What do you think is causing my symptoms?
- What else could be contributing to my symptoms?
- What kind of tests will help you diagnose my condition?
- Will I suffer from this for the rest of my life?
- What are the long-term complications of my disorder?
- What is your treatment approach?
- Are there medications that can help me manage my symptoms?
- How can I approach my employer about my condition?
- Is there a support group in the area that I could reach out to?
- What other resources are available for me?
Cataplexy Resources and Support Helpline
The Narcolepsy Network has a website with information about narcolepsy and cataplexy, and a link to support groups available by state (www.narcolepsynetwork.org). Wake Up Narcolepsy also offers information to help evaluate your sleep disorder, resources for financial assistance, and links to other informative sites (www.wakeupnarcolepsy.org). If you have cataplexy without narcolepsy, identify the most useful resources for you based on your other medical conditions.
Living with cataplexy can be challenging, but there are therapy and treatment options available to help you manage your symptoms. Utilize these resources to get control over your condition and improve your quality of life.