Community Perspectives on Living With Narcolepsy

Narcolepsy is a sleep disorder impacting between 135,000 and 200,000 people in the United States alone. With symptoms like excessive daytime sleepiness and insomnia, it's no wonder many people with narcolepsy report problems with sleep.1 To help us celebrate and raise awareness for the National Sleep Foundation's Sleep Awareness Week®, we asked our Community Health Leaders a few questions about managing narcolepsy and sleep health. Here's what they shared. Bedtime routines and sleep hygiene Q: Do you have a sleep routine or bedtime routine? What are the essential steps you take to try to get the best rest? Alyssa Walker: My bedtime is at 10:30 PM, while my bedtime routine starts at 9 PM. The first thing I do is limit my screen time. I turn off my computer and the TV, then I limit my phone usage. I often take a shower and then play soothing music. Lastly, I write out my to-do list for the next day. I do this because it helps me relax knowing I have somewhat of a plan for the next day. An essential thing that has helped my sleeping is leaving my phone in another room. I used to check my phone throughout the night, and that's not a good sleeping habit. Whenever I don't have it next to me, I am not tempted to grab it and scroll through it. Tatiana Corbitt: My bedtime routine (when I am being "good") includes bathtime and a podcast and a cup of tea. I also like to keep my phone away from my bed so I don’t mindlessly scroll in the middle of the night on accident while half asleep. I also have to take my nighttime meds, wear a nightguard to reduce teeth-grinding (it started to get bad when I got narcolepsy), and sleep with a stuffed animal to keep away the nighttime hallucinations (or at least make the experience less scary). Kerly Joy Bwoga: I start by taking my Xyrem in the kitchen. I take all my night medication, brush my teeth, put on face cream, do my nighttime eye drops, and ready my CPAP [continuous positive airway pressure] machine. Then I ask Alexa to play airplane sounds. Recently, my insomnia is out of control, so I am taking melatonin at night and it's been helping a bit. Myths about narcolepsy and sleep health Q: What do you feel is the biggest myth or misconception about narcolepsy and sleep? Iris Vasconcelos: I feel that the biggest, and most harmful, misconception about narcolepsy is that it's "not a serious illness." Unfortunately, I do believe that this is quite a widespread belief. People’s approach towards (and handling of) those of us with narcolepsy communicates a very dismissive attitude. What exasperates me the most is that everywhere you look, people are always talking about the importance of sleep and its impact on your quality of life, yet when it comes to narcolepsy, this same understanding doesn’t seem to apply. Lauryn Craine: There are a lot of myths and misconceptions surrounding sleep and narcolepsy, and it's annoying. I think the biggest misconception is that people with narcolepsy can push through being sleepy. Sometimes I can catch myself, but it's rare. Even then, I’m more than likely bobbing in and out of consciousness trying to wake myself up, which is not fun! I wish there were fewer stereotypes surrounding falling asleep and pushing through. If my body is sleepy and I'm ignoring it, that’s going to make the situation worse, not better. If I had spaces to rest or people who understood I couldn't push through the sleepiness and let me nap for a bit, I might have had fewer sleep outbursts during lectures. It's easier and safer to rest. Tara O'Connor: I feel like the biggest misconception about narcolepsy and sleep is that it is not like what movies portray, and we cannot just fall asleep anytime and anywhere. I feel like whenever I tell someone new that I have narcolepsy, they almost always say, "So do you just fall asleep randomly all the time?" This is usually frustrating at first because I hear it way too often, but I have started to look at it as an opportunity to raise awareness and educate others who do not know much – if anything – about narcolepsy and sleep. Tatiana Corbitt: I think the biggest myth surrounding narcolepsy is that it’s just about being a little extra tired. In reality, sleep is one of our body’s most important functions, and with narcolepsy, its ability to sleep and wake is impaired. We are not lazy like people tend to think. In fact, we are much stronger than the average person, since we are constantly struggling to participate in consciousness. Alyssa Walker: One of the biggest misconceptions about narcolepsy is that because we sleep so much, we are well-rested. What I wish others knew about sleep disorders and sleep health Q: Is there anything you wish more people knew about sleep and sleep health? Lauryn Craine: I wish more people knew that narcolepsy isn't the only sleep condition that has excessive sleepiness! There are so many conditions that are similar to narcolepsy – idiopathic hypersomnia (IH) exists, too! Also, I just wish more people knew the details in general; our conditions have more to them than being sleepy. They come with a plethora of symptoms! I realized after being diagnosed that people (myself included) don't really know about narcolepsy and assume a lot about the condition. If more people took the time to research when someone tells them they have narcolepsy, then I feel there would be fewer people in the world who think it's "just dozing a lot." Kerly Joy Bwoga: After 21 years of dealing with narcolepsy, I want people to know that sleep is important and it affects your physical, emotional, spiritual, and mental well-being. If you don't get enough of it, your whole life is disrupted. I want people not to take sleep for granted and to realise it is a privilege to be able to sleep at night and have healthy sleep. People who have sleep disorders are not lazy; I would love for people to know how much people with sleep disorders crave restorative sleep and the health benefits it has. I would also like people to know that lack of sleep affects your mood. It is hard to be cheerful all the time when your body feels like it has not slept in 3 days. Tatiana Corbitt: I wish more people knew that sleep is not for the weak, it is for the strong – you can’t stay healthy for long without good sleep. And it affects everything. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] It is hard to name just a single symptom of narcolepsy that makes life a challenge. Narcolepsy makes nighttime sleep difficult in many ways, which, in turn, can make normal daily activities a struggle also. To find out more about the varied symptoms of narcolepsy that cause the most common difficulties and frustrations, we reached out to our Facebook community with a prompt: "Fill in the blank: My most frustrating narcolepsy symptom is _____." Here are some of the responses you shared. Feeling drowsy during the day When every night brings interrupted sleep, it is a challenge to have enough energy to get through the day. Excessive daytime sleepiness is one of the hallmark symptoms of narcolepsy; the most common answer to the prompt among our members was that feeling sleepy almost all of the time is the most frustrating part of living with this sleep disorder. Many people in the community rely on stimulants like certain medications or caffeine to make it through their daily workloads. “It is almost impossible for me to actually finish anything because it takes so much longer than it would for someone without narcolepsy. It can be so incredibly frustrating.” “Excessive daytime sleepiness. It makes it hard to do basically anything.” "Having the genuine desire to accomplish so many things at home, but not having enough energy to even start, let alone finish tasks." Getting only fragmented sleep It is common among people with narcolepsy to wake up several times during the night, and many also suffer from insomnia. This can lead to feeling anything but refreshed come morning. Some members of the community shared that they have accepted that they can get only short periods of sleep, so they try to make that sleep the best it can be. This can include trying to keep a consistent sleep schedule and avoiding alcohol, especially before bedtime. “Fragmented sleep. It really sucks when you cannot sleep more than 5 hours without being interrupted.” “Not sleeping for more than a couple hours at a time at night.” “Having energy when it is not needed, then not having energy when it is needed.” Needing suddenly to sleep They’re called “sleep attacks.” Out of nowhere, the feeling of suddenly and desperately needing to sleep arises. These attacks are unpredictable and can make everyday life a challenge, knowing that you can be interrupted at any second. A few commenters shared that they avoid eating unless they know they have the time and space to sleep immediately afterward. Other solutions given include medications. “When I am in the middle of doing something important and productive, and the sleep scourge hits me out of nowhere. I have to drop what I am doing immediately and sleep.” “Sleep attacks! I do not eat at work in order to avoid them.” Waking up exhausted from vivid dreams Dreams occur in rapid eye movement (REM) sleep. REM accounts for 20 to 25 percent of sleep for people without narcolepsy. People with narcolepsy fall in and out of REM sleep very quickly and easily, making them much more likely to remember their dreams. Sometimes these dreams are frightening or intense and can lead to an "emotional hangover" long after waking. “The vivid dreams make me feel exhausted when I wake up.” “The vivid dreams that make me wake up exhausted.” Sudden paralysis with strong emotions Type 1 narcolepsy is characterized by a symptom called cataplexy. Cataplexy is a sudden loss of muscle tone that can be brought on by strong emotions like fear, anger, stress, or laughter. Periods of cataplexy are often short-lived, but given that emotions are often unpredictable, so is how long the cataplexy attack will last. “The cataplexy with strong emotions.” “Rubber legs.” Limits on driving Driving can be a challenge for people living with narcolepsy for several reasons. One, driving at night can often make you sleepy. Two, the possibility of a cataplexy attack poses an additional threat to your safety while driving. For some people with narcolepsy, the solution is to limit their driving to short distances that they know they can manage without falling asleep. Taking a nap before driving or in a safe pullover spot can help as well. “The inability to drive at night despite medication.” “Getting sleepy driving after more than 10 minutes has severely limited how far I travel.” "I had my first cataplexy while I was driving. I can't move from the waist up. I ended up 12" into the oncoming traffic. That was the last time I drove." Needing to cancel or avoid making plans Several community members shared that they are most frustrated with how narcolepsy makes it hard to have a social life. Narcolepsy can cause you to fall asleep in the middle of time with friends, or it can make you too tired to show up for plans in the first place. For some people, the solution is to make plans only with friends who understand that canceling at the last minute might happen. “The inability to sit at a bonfire, watch a movie, or even sometimes sit in a meeting without falling asleep.” “The lack of control or anticipation of when I will have sleep attacks. I cannot plan anything!” "The lack of understanding from other people." We want to say thank you to everyone who shared their experiences in response to our prompt for this community views article. We are grateful for your willingness to share your frustrations with us and your fellow community members. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"], Living with narcolepsy can be hard for anyone to manage, but being a parent with narcolepsy and caring for children while managing your symptoms can pose unique challenges. We recently asked our Facebook community, "Are there any parents in the community that can share how they manage parenting and living with narcolepsy?" Here's what community members shared to help other parents with narcolepsy. A few stories from parents with narcolepsy Not a bad mom "I found out I’m narcoleptic 2 weeks before my 37th birthday. My kids [were] 8 and 6 at the time of diagnosis. I cried my first day on medication, because I finally understood I wasn’t a bad mom — I was just tired! I wish I’d known before I had kids. Like most people with narcolepsy, I have to have a routine. My worst days are caused when I’m abruptly woken up in the middle of the night. Unfortunately, my partner called me lazy for years. I thought I was depressed. He’s been better, but still does not understand." Being a listening ear "It is definitely a struggle. One thing that works well for me is having a routine with built-in 1-on-1 time with my teenage son and preteen daughter. I may not be up for much, but I listen to them, and we hang out. My daughter's favorite thing is something I made up called a 'bed picnic.' It's where we order food delivery and set it up like a picnic on my bed." Self-care is productive "It’s a challenge, especially not being able to be on certain medications when pregnant or breastfeeding. I think it is key to know your limits and prioritize rest when you need it (easier said than done). Try to remember that rest and taking care of yourself is productive." Other advice from parents with narcolepsy Parents who live with narcolepsy have found many other strategies for caring for their kids alongside managing their narcolepsy symptoms. Here are a few more: I partnered with another parent "I did not do it very well. I partnered with another parent. My most difficult time of day was after-school hours. She picked up all our kids, took them home for a snack and activity time, then brought mine home. Then we did homework, etc. I do not know what we [would] have done without her. On the days she was unable to do this, I had a really difficult time. I finally hired a childcare person to come in for a couple of hours to supervise. During those times I would nap. When not possible, it was not a good time... for any of us." I nap during the day "When mine were toddlers, they were trained to sit on top of me (on my stomach, back, or hip, depending on how I was laying) when I needed to nap and watch a movie. If they moved it would wake me up. Now that they’re older, them being in school makes it so much easier, because I nap during the day." I did what I had to do to get through "I had my 3 kids age 6 to 10 for 2½ years. I worked full-time and came home to care for my kids. I am a lousy cook and not a great housekeeper. I did what I had to do to get through and keep the kids at home and happy. I married a wonderful woman who cared for all of us. Life was so much better to have someone who got us through. We were married for 37½ years, and I miss her with all my heart." Give yourself grace "Give yourself grace. My kids and husband know I need a nap every day. They are pretty good at leaving me alone for 60 to 90 minutes every afternoon. It makes all the difference." Are you parenting with narcolepsy? Are you a parent living with narcolepsy? What advice would you give, or what stories would you share, with other people parenting with narcolepsy? Share with us in the comments below, or start a forum discussion. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],,Living with narcolepsy involves managing a variety of symptoms. The most common symptoms are excessive daytime sleepiness, cataplexy, and sleep paralysis.1 Many people with narcolepsy also experience brain fog. Brain fog is the inability to focus or concentrate on conversations or tasks. Seeking to shed more light on this symptom, we recently turned to our Facebook community and asked: “Is brain fog something you experience? How do you deal with it?” [poll nexus_id=10587] Here are some of the helpful reflections you shared. Write it down Many of you shared that you compensate for the brain fog by writing things down. Calendars, sticky notes, whiteboards, chalkboards, notebooks, phone apps – no matter what you use, writing helps you keep track when you cannot trust your brain to remember an appointment or password. “The most effective thing for me is having a whiteboard hanging up on my bedroom wall. This way, I can rub things out easily, write quickly, and it’s always visible.” “Post-its placed where I’ll see them is what helps me.” “Lots of notes, calendar entries, and read-aloud functions on computer apps.” Dealing with the fear of early-onset dementia When unfamiliar with the concept of brain fog, the symptoms can be terrifying. Forgetting words, blanking on names or appointments, or the inability to remember a conversation from 5 minutes prior often result in worry about dementia. While it is always important to rule out that possibility with a doctor, many of you were relieved by this discussion about brain fog. “When I get brain fog, I get very scared thinking I am going to have dementia or Alzheimer’s at a young age.” “Thank you for commenting on brain fog. I thought I was on my way to the dementia unit I work on!” “It was actually a relief to know there is a legitimate reason for it. For someone who never forgot anything, it concerned me when I started being unable to remember things.” Diet and exercise Reaching for a pick-me-up also helps many of you cope when brain fog sets in. Sugar and caffeine can provide the boost you need to get you through the sluggish feeling. You also shared that maintaining a healthy diet and exercise routine can mitigate foggy episodes. “Upwards of 1000 mg daily of caffeine.” “If I eat healthier, like my ‘super salads,’ both my physical and mental energy can go up significantly.” “Really no way to deal with it, other than reach for caffeine or something sweet.” “Stretch, stand, water, and exercise.” How do you manage brain fog? Join the discussion! Find a way to laugh Many of you shared that you choose humor to cope with the embarrassment of brain fog. You feel self-conscious asking to repeat a question, forgetting words, and missing chunks of a conversation. Often the easiest way to cope is with humor. “I made jokes to deal.” “I often make a joke out of it if I have to ask about something a second or third time. Something along the lines of getting older. Many times, I find that is easier than trying to explain narcolepsy.” Radical acceptance Acknowledging that you have brain fog and extending compassion to yourself without judgment or frustration is an approach some of you shared. Narcolepsy is part of you. Some days that means symptoms slow down your mental capacity, and that is okay. “First thing is to try to practice realistic self-talk. Today feels slower. Get comfortable with 'I don’t know' as an answer. It’s good to communicate that you need extra support and will likely ask tasks to be repeated.” “When I find myself forgetting things, I stop where I am, take a deep breath, take a couple of seconds to get myself together, and try to keep going.” We are grateful to everyone for engaging with this prompt! Thank you for the insights you provided. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] The first time someone sees – or experiences – an episode of cataplexy, they may not know what it is. What is cataplexy, and what does it look like? Cataplexy is a sudden loss of muscle tone that leads to weakness and may cause a person to fall. For some people, these attacks can also include the inability to speak or keep their eyes open. Cataplexy is often triggered by strong emotions such as laughter, anger, or fear.1,2 Given its similarities to epilepsy, cataplexy can be mistaken for a seizure, but it is not a seizure. It is one of several symptoms people with type 1 narcolepsy might have. Episodes of cataplexy usually end quickly, within a few minutes or even seconds.1 Cataplexy, like a seizure, can potentially be dangerous. For example, the person experiencing it could get hurt when falling. It can also be scary for the person having the attack or those around them. What can we do to help someone during an episode of cataplexy? For friends and loved ones of someone living with narcolepsy, it can be a challenge to know what to say and do when these episodes occur. To find out what the community finds most helpful, we reached out on the Narcolepsy.Sleep-Disorders.net Facebook page and asked: “When experiencing cataplexy, what is the best thing someone can do to help?” Here is what the community told us. Make sure the person is safe Because the person is likely going to fall, one way to be most helpful is to offer physical support. Stand behind the person and be ready with your arms out to catch them, much as you would a fainting person. Anything you can do to slow or stop their fall is good. It is also a good idea to stay near the person so that when they come to, they know they are not alone. “If my whole body gives out, catch me and just make sure I do not hurt myself or bump my head.” “Make sure no one messes with my body.” “Catch me before I fall. Support me till I am safely on the ground if you cannot hold me.” “Catch my coffee/whiskey/baby or whatever I am holding so I do not drop it.” Stay calm Set the tone for others by being calm. Give the person some time and space for the episode to pass. The more you are able to be a voice of authority reassuring others that your loved one is OK, the calmer the situation can be. “Do not yell or overreact.” “Stay calm and do not make a scene.” Do not make a big fuss — wait it out Nobody likes it when a huge crowd hovers and stares after we have a fall. People in the community mentioned that they appreciate it when the people with them talk in soft voices, play on their phones, or otherwise ignore the event. By not making a big fuss over the incident, it is less likely that more strangers will be drawn in unnecessarily, asking questions that may not be helpful. “I always tell people to just give me a few minutes and I will be fine. I saw a video of a teenager experiencing cataplexy once, and all her friends sat down on the ground with her and just carried on with their conversation. I always thought that was cool.” “Do not talk to me. Do not stare.” “Stop talking, sit quietly, and wait (like maybe scroll through your phone or something) for a minute.” “Change the subject.” “In most situations, do nothing. Just give me a few minutes.” Take advantage of available safeguards If you are comfortable with signals that let people know of your condition, consider a medical bracelet or a support animal. Although it is with good intentions when strangers rush to help, they may call unnecessary emergency medical services. “I have a dog I have trained to lay with me. He has a vest with badges that say ‘in training, do not separate from handler,’ and ‘do not touch or call 911 unless I am hurt.’” How can the people around you help? We want to say thank you to everyone who shared their experiences for this story. We are grateful for such an active, caring community. Are you someone who experiences cataplexy? How do you want the people around you to help, if at all, when you have an episode of cataplexy? Share with us in the comments below! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Living with narcolepsy includes navigating many symptoms. It is a daily challenge. The symptoms can significantly alter your life. We were curious about the symptoms you experience with narcolepsy. We recently asked our Facebook community: “What has been your most surprising symptom of narcolepsy? How do you manage it?” You shared how this disease impacts you. Memory, focus, and brain fog One hallmark symptom of narcolepsy is excessive daytime sleepiness, or EDS. This sudden feeling of sleepiness can come on at any time. It is not determined by how much or little sleep you get at night. This symptom can leave you feeling:1 Foggy Unfocused Unable to remember things You may also experience automatic behaviors that contribute to brain fog. You engage in automatic behaviors when you fall asleep for several seconds while performing a task. You find that you cannot remember what you read. Notes you made look like gibberish. Many of you feel frustrated with these symptoms.1 “Not being able to remember things. I love reading. I can read a book and know I loved it but can’t remember small details about it.” “Automatic behaviors and brain fog. It’s interesting to read the notes I take during that time. It’s usually unintelligible nonsense.” “That I keep making major decisions that make sense at the time. Then figure out it wasn’t such a good decision.” “Not being able to read much anymore, and I have spent a lifetime (up until a few years back) devouring books.” Dreams, hallucinations, and sleep problems Narcolepsy often leads to disturbed sleep and dreams. You experience very vivid dreams. These can disrupt your sleep, resulting in poor sleep quality.1 You also shared your experiences with hallucinations and sleep paralysis. Hallucinations occur as you fall asleep or wake up. They can include frightening, vivid images.1 Often sleep paralysis accompanies hallucinations. During sleep paralysis, you feel trapped in your body, unable to move. It can last several seconds or a few minutes. These symptoms often feel alarming and scary.1 “The hallucinations, which I call pre-dreams. They have actually saved my life many times because I recognize that I’m going to fall asleep when I start dreaming while awake.” “Sleep paralysis. Sometimes I get up in the night to pee, and when I try to go back to my bed from the bathroom, my legs feel they are fighting for the right to move.” “Sleepwalking.” “Lucid dreams. I’ve woken my entire household screaming in the middle of the night.” Surprising symptom triggers Many of you find unexpected triggers impact your narcolepsy. Strong emotions can trigger muscle weakening and loss of control (cataplexy). While it is a common symptom, it feels unsettling when it occurs.1 Another symptom you find surprising is strong reactions to temperature. You need a consistent temperature, or you begin to struggle. Additionally, depression and narcolepsy can form a vicious cycle of exhaustion. Each exacerbates the other, and you feel stuck.1 “I didn’t develop anger as a trigger for cataplexy until my father developed Lewy body dementia. Since he passed away, I’m back to silliness and laughter. I wasn’t ever angry/mad at him, just his symptoms.” “The lack of muscle tension in my hands is relentlessly annoying.” “One of the oddest things that developed is intolerance to heat and more sweating than usual.” “Too much above or below 72 degrees, and I have problems.” “My depression fuels my tiredness; my tiredness fuels my depression.” Thank you for sharing your experiences We appreciate all the thoughtful responses to our questions. Living with narcolepsy is challenging. Sharing with one another helps us feel less alone. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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