Narcolepsy is one of the most commonly misunderstood health disorders. This neurological autoimmune disorder can affect people in varying ways and is often extremely difficult to diagnose. Here are 5 things that most people need to know about narcolepsy and how it affects those patients and their loved ones.
It Doesn’t Mean What You Think It Means
Narcolepsy is often the punchline for many jokes because people think that it is a laughing matter due to all of the general misconceptions about the disorder. The media has a tendency to portray narcolepsy as a joke and this means that many people do not take the condition seriously. Common symptoms of narcolepsy include extreme exhaustion, sleep paralysis, and disruptive sleep-wake cycles. People with narcolepsy may experience significant disruptions in their daily routines that make it difficult to lead a normal life. While the exact cause of narcolepsy is unknown, knowing all of the facts about the disorder can help you to understand how to best treat the issue.
What is Narcolepsy?
A CONDITION THAT CAUSES PEOPLE TO RANDOMLY FALL ASLEEP
Narcolepsy is a rare neurological condition that affects the brain’s ability to regulate a normal sleep-wake cycle.
Essentially, sufferers don’t have an inbuilt body clock.
Narcolepsy affects an estimated 1 in every 2,000 people in the United States. That’s 200,000 Americans and approximately 3 million worldwide. It is estimated that only 25% of people who have narcolepsy have been diagnosed and are receiving treatment.
Although it’s usually thought of as a sleeping disorder, it’s now thought of as an auto-immune disorder, caused by the destruction of certain cells within the brain by the body’s own immune system.
There are four main symptoms of it:
- Excessive daytime sleepiness: falling asleep at inappropriate times throughout the day, or experiencing chronic sleepiness.
- Cataplexy: involuntary muscle weakness in response to emotions – attacks can be anything from mild facial weakness to the knees buckling and the body collapsing. A third of all narcoleptics don’t have cataplexy.
- Sleep paralysis: the inability to move while being conscious, either when falling asleep or waking up from it.
- Hypnagogic hallucinations: vivid dream-like experiences.
Source: Narcolepsy UK
What Causes Narcolepsy?
It Impacts Pretty Much Every Aspect of Life
In addition to the quality of their sleep, people with narcolepsy see effects that stretch far beyond the issue of fatigue. Tasks such as driving become increasingly dangerous, with the risk of becoming involved in an accident tripling for those who drive fatigued compared to those who feel rested. Patients may also realize that their personal relationships are suffering as a result of narcolepsy. Getting in touch with a support group can make a world of difference for those that experience this crippling disorder.
People with narcolepsy often have another accompanying mental health problem called depression! Narcolepsy impacts REM sleep and creates havoc on a person’s normal sleeping patterns, thus leading to other mental health issues that include depression.
Narcolepsy is also linked to an increased risk of developing depression. This could be because narcolepsy symptoms can be stressful and isolating, especially without proper treatment. … Other sleep disorders can accompany narcolepsy, such as REM sleep behavior disorder, sleepwalking, and sleep apnea. – National Sleep Foundation
I Can’t Stop Falling Asleep | Living Differently – Belle Hutt
In the case of 25-year-old, Belle Hutt, narcolepsy has pushed her to the brink of “not wanting to live” in the past. Through her sadness and depression, she tells her story in this compelling video of life, love and living with and overcoming narcolepsy.
There Is No Cure
Unfortunately, there is no cure for narcolepsy. Instead, sufferers of this disorder must rely on treatment options that only help to manage the symptoms. There are various lifestyle changes like Belle Hutt has made, that can help to mitigate the effects of the disorder. People suffering from narcolepsy can try to mold their day around when symptoms typically hinder them. They can also be candid with those around them so that others are aware and more understanding of their condition. Excercise is, most often, a great way to combat almost all mental health conditions.
As with all medical conditions, knowledge is power. Before you make assumptions about a condition, be sure to pool as much information together as you can. Developing a greater understanding of narcolepsy will help sufferers to get the help that they need and their loved ones will be able to more effectively provide support.
For more information about sleep disorders, read here!
It’s like a random dose of anesthesia tht comes upon me & I’m out like a light. When I’m in public .ost people assume tht zIm high or drunk. It’s devastating!
I got diagnosed with mild narcolepsy after my first year in University, but that whole year was so impossible!! I’d have to explain to my teachers that I wasn’t sleeping in their class because I was bored or sleepless, but that I simply couldn’t stay awake. In my high school and community college years, some teachers would even call me out in front of the class and people would laugh but I felt like crying. :/
Can’t even read a page of a book before I start passing out, but I’m so glad I have meds to help me stay awake now, it’s been life-changing for years!! I can’t imagine if I hadn’t gotten diagnosed in college, I might have fallen asleep at work meetings, while driving, or worse!
I am a 33 year old, African American woman, with narcolepsy and cataplexy. You have no idea how it feels to be living with such a crippling disorder until you walk a few steps in my shoes.
Imagine not being properly diagnosed in the first place, and then after you finally get diagnosed. You’re not properly treated because the side effects of the medication are causing you severe migraines and brain fog. Not to mention, getting covid made things worst.
Proper testing and research is much needed for narcolepsy. This crippling neurological disorder causes major functional deterioration.
Thank you for saying this. It’s beyond devastating on psychosocial, socioeconomic levels and more. Far more than people are willing to look at. The medical community needs to step up more. Our own families and friends are enough of an uphill battle to deal with trying to defend or convince that it’s not some fluffy disorder that gives us the luxury to sleep more. It’s stolen so much from me in the last 35 years and of course not diagnosed properly for YEARS. truly devastating
I have narcolepsy. I got diagnosed finally at age 35. I’ve lost multiple jobs bc of this. I’ve been trying to get disability for 3 years now. Narcolepsy should be considered a disability it takes control of every part of your life
Katie, thank you for your comment! What resources have you engaged with that have assisted you so far?
Agree 100% not to mention retroactive compensation for all of the years lost to this disease not allowing us to thrive normally while being expected to be normal. Going on disability would suck as it does for any person but it would help ease the stress of financial burden and inability to work the way I would’ve liked to if well.
I have had Narcolepsy since I had Measles Encephalitis when I was 6 years old. So many losses, my ex decided I didn’t appreciate him because I was too exhausted in the evening to hang out after the kids went to sleep. 1 example only.
I didn’t get diagnosed with narcolepsy and cataplexy until I was 48, and was given modafonil to moderate it, but since I suffer from high blood pressure they won’t prescribe medication for my narcolepsy as it raises my blood pressure, so now I have to cope with it without any meds, I applied for disability and was refused, so I appealed and won my appeal and was awarded higher rate care component and higher rate mobility, however 2 years later I was reassessed and refused any care allowance but still given mobility , the system is a joke, I’m due another assessment shortly where I’ll see someone from ados who knows nothing about my condition and will ask loads of irrelavent questions and ignore letters from my doctor and neurologist, or the fact that I can’t have the meds to make it manageable , just like they did the last time ,even tho I explained why I couldn’t have the meds they made out that I wasn’t on meds thereforè I can’t be disabled, and why review my allowance every 2 year when my condition is incurable,
I had high blood pressure from a very young age despite having zero risk factors. It continued into my 30’s and was at its highest when I was diagnosed. My first two drs prescribed me Xyrem and adderall bc my symptoms were so bad and I had zero help. This allowed to me to work and even move states for my career. My third dr refused to prescribe adderall until I had my regular dr prescribe bp medications. Despite meeting her requests, being treated successfully, she continued to refuse. She stated she was going to but then didn’t. She did request that I keep making appointments with her despite it being very difficult to make the drive out of state to see her. She then fired me for being late bc I over slept.
I found another doctor, it was the last one as four others refused to treat me. I was going to have to drive some serious hours of this didn’t work out.
The dr put me back on adderall and I continued to take Xyrem. About six months into it my blood pressure was actually near the normal range. I was suprised bc I hadn’t been taking the bp meds. 6 months later my bp was lower than it had ever been. It’s been 3 years now and it’s continued to remain at the healthiest level of my lifetime.
I feel like the stress resolved from my dr and my body had time to heal.
Staying more alert during the day helps you sleep better at night. A good nights sleep helps you heal.
We don’t need any added stress. Has your dr considered they may be part of your problem?
Asking that won’t help you but maybe finding someone else will.
Good luck to you.
Hi there, I was diagnosed 24 yrs ago, I live in England uk . I was first prescribed modafinil and this worked a treat for years. Same as you it made my blood pressure high but I’ve never been declined meds because of this. I’m now on dexamphetamine and again my blood pressure is very very high, systolic (bottom reading with bp) always sits over 100 & at its highest 117 even tho I’m taking bp meds, antenanol and perindeprol . My reading should be about 85, such a worry x
Hoping things get sorted for you , I’ve tried for pip but to no avail x
I was recently diagnosed with narcolepsy and cataplexy (age 15) after years of people telling me to “get more sleep at night” and “WAKE UP”. Every time I would go to the doctors to get a blood test everything would come back fine and I would get told to “not go to sleep so late”. I’m constantly laughed at and made fun of in class, honestly just feel like crying. It started between the age of 7 – 10. Even today trying to explain it to friends and teachers, they make jokes out of it, make out that it’s not that big of a deal. You have no idea what it feels like to wake up not knowing that you even fell asleep in the first place, have people stare at you, asking, “do you even sleep at night?”, “wow, you must have stayed up late” and having people constantly mocking you. It’s just easier not to tell anyone because even when I do explain it, they never understand, or find it hard to believe. Sometimes my friends will make me laugh or I’ll just be walking down the stairs and all of a sudden feel like I’m going to pass out, my vision gets blurry and my knees collapse.
I get mad at myself when I fall asleep in class and sometimes just feel like balling my eyes out. I have little tactics like scratching myself to the point where it would start bleeding, but that would only last for a minute or two. It has honestly ruined my life.
It should be considered a disability as it controls every aspect of your life.
I am also a narcoleptic. I work in a school as a behavioral support. I understand your struggles, students are assholes sometimes when they’re ignorant and don’t understand something. You should probably have your parent / guardian go to the school and look into getting a 504. It’s where they make what’s called an IEP an individual education plan for you that will give you extra breaks outside of class where you can schedule naps. if you’re feeling overwhelmed or stressed as you know it can cause more what I call “attacks”. I would even go as far as making a PowerPoint or some sort of slideshow or an email that is distributed to your counselors your admin at your school and your teachers explaining exactly what narcolepsy is and what its symptoms are. Make sure to add in the information what you need from them to help you succeed. Educators sometimes need to get educated. Good luck
Hi from the uk,I’m 38 years old man diagnosed with t7ype 1 narcolepsy this year,never has any symptoms apart from this year when I found myself chest chin flat watching comedy movie,started having fits at the wheel around the same time,stopped driving and carried on working until I was falling asleep during rest periods and finally realised something was drastically wrong and I needed medical help,Dr referred me for Mrs scan,had a telephone appointment beforehand where staff member knew what my problem was and informed me the best he could without diagnosis, hats off to the NHS,sleep clinic after Mri then finally to London for a sleep latency test,then diagnosis and start of treatment,1 tablet venlafaxine 37.5mg,reduce cataplexy significantly not completely but very affective,side affect however out weigh gains so I’m due to try politisant shortly,benefits system very hard work however narcolepsy uk claims to help I’d not applied before,help is there you have to bash the door and make yourself heard,type 1 narcolepsy is very severe when it comes out of the blue and the best advise I had is the person before narcolepsy is the old me,I am the same person but I will never be the same again
My 17 yo son has narcolepsy and cataplexy. He is very depressed now too. I’m wondering if anyone knows the best doctors and medications?
I have narcolepsy with cataplexy and severe depression. I think the most important thing is to treat the depression. The Narcolepsy is very important to treat as well of course. It’s a major factor that causes the depression. Treat the depression first. it’s easier, he can do that with his PC. Definitely get him into therapy, if your able. If therapy is something that isn’t obtainable for whatever reason, online support groups for teens could definitely help. Like they say, knowledge is power. You both should learn everything you can about narcolepsy and it’s symptoms. When you have narcolepsy you feel worthless, and that there’s not really a reason to be on the Earth because you’re not able to get engaged in your own life at 100%. You always feel less than. So the most important thing is get treatment for his depression, especially with this age.
My daughter, age 23, diagnosed six years ago. Getting adequate medications for her is a never-ending cycle of frustration and I am in tears right now. Her doctor prescribes the meds, but insurance will not cover, or will cover half of what he prescribes. She is forced to choose between taking the full dose and having two weeks of productivity and then having no meds and sleeping the next two weeks. Or taking half of the prescribed dosage and feeling partially awake for 30 days. Without the insurance she can’t afford the $485 month cost of her meds. On top of that, the stricter controls on controlled substances have all the pharmacists acting like she’s just trying to get high. It is a full time job to try to wrangle all this
Idk if this will be helpful but, shortly after I was first diagnosed I lost my insurance. I started going to a income based clinic in my area. They had a wonderful lady there that strictly helped with getting free medications for people provigil was medication that I was on and it was when it first came out it caused upwards of $4,000 a month and the company sent me free meds in the mail for 2 years. Hopefully you can find a similar situation near where you live might take a little bit of research but in the end whether she has insurance or not if she doesn’t make a certain amount of money they will help her in getting her meds and she won’t have to struggle so much. Good luck.
This Neurological autoimmune disorder, It’s often difficult to diagnose but there are varying symptoms that can take time to diagnose If you or someone you know is struggling with this disorder, it’s important to seek out professional help. This can be difficult and confusing, but there are resources available to help. If you or your loved one needs support finding the right diagnosis and treatments, please reach out for help.