Know Our Stories: A Narcolepsy Blog

Scott

Living With Narcolepsy With Cataplexy: Felt Like A Short Circuit Within My Brain

Just prior to narcolepsy entering my life, I was on the highway to a bright and prosperous future. I was an excellent student, athletic, and driven to succeed. Then narcolepsy merged into my lane and knocked me onto a dark, lonely, and bumpy road full of twists and turns. Every aspect of my life was forever changed. Completing simple routine tasks became difficult, and people quickly developed less favorable impressions of me.

In addition to excessive daytime sleepiness (EDS), sleep attacks, sleep paralysis, hypnagogic hallucinations, nightmares, etc. – I began to notice another strange and unusual phenomenon known as cataplexy, which is a sudden loss of muscle control often triggered by strong emotions or certain situations. My first recollection of a cataplexy attack came while I was at a football game. Our team had just intercepted the ball and ran it back for a touchdown. We all jumped to our feet cheering, and for a split second everything just shut off. My knees buckled, and I instantly dropped the beverage I was holding. It felt like a short circuit within my brain and reminded me of how the lights occasionally flicker off for a split second during an electrical storm.

One of the worst cataplexy attacks I’ve had was when my wife delivered some devastating news concerning a family member. My knees instantly buckled as I was overcome with emotion. The second I regained temporary control, I immediately began walking towards a chair, which was several steps away. Each step I attempted to take, my knees buckled again and again, one attack after another, until finally I made it safely to the chair. It was as if someone operating a light switch in my brain was flipping the switch on and off repeatedly. Needless to say, this event scared my wife to death as she had never witnessed me having continuous multiple cataplexy attacks in a row. Scared me a bit also. Thankfully, I’ve never completely fallen to the ground during an attack.

Over time and as I experienced many more episodes of similar cataplexy attacks, I began to realize strong sudden emotions (laughter, excitement, sadness, anger, etc.) when in a standing position triggered these attacks. It took years of suffering from the life-altering effects of narcolepsy before I got help to manage my symptoms that has greatly improved my quality of life. Today, I am thrilled to say that my cataplexy has been under control for over 10 years and counting. Never give up!

US-NAR-2100176/Dec 2021

Scott

Narcolepsy With Cataplexy: Live Each Day to the Fullest

For those of us living with narcolepsy with cataplexy, at some point someone we care about may refer to us as lazy or even worthless. We may be accused of not trying hard enough, or making our condition out to be worse than it really is. After all, we look completely healthy and fully capable of functioning at a high level. Narcolepsy is truly an invisible disorder, a daily challenge on multiple fronts over a lifetime. It is my belief that to successfully manage this potentially debilitating disorder, there are three areas that need to be addressed to maximize quality of life:

Find the Right Doctor: For me, a neurologist who specializes in sleep disorders was critically important, but above all else, your healthcare provider should be someone who will listen, someone who is willing to work with you, and someone who is willing to take the time to educate your loved ones. Narcolepsy isn’t simply mind over matter.

Support from Family & Friends: It is essential to educate family and friends with as much information as possible concerning the effects of narcolepsy. It’s difficult to overcome every challenge alone. Support from family and friends is so important to successfully managing this disorder.

Believe in Yourself: No matter how difficult life can be when living with narcolepsy, do your best to remain in a positive state of mind. Never blame yourself for consequences beyond your ability to control. Practice thinking positive thoughts. Stay true to yourself, seek out the right assistance, live each day to the fullest extent possible, know you aren’t alone, and never give up!

US-NAR-2100232/Dec 2021

Andre

Being Your Own Advocate: Living With Narcolepsy

As a person living with narcolepsy, what does it mean to be your own advocate? For me, it began even before I got my narcolepsy diagnosis. Almost immediately after noticing narcolepsy symptoms, I asked for a referral to a specialist. When my doctor retired, it took time to find the right fit with a healthcare team and to find a new healthcare provider who had experience with narcolepsy.

After feeling like I was not being heard, I learned I had to communicate and advocate for my needs with no fear of judgment. When I found a healthcare team that considered my whole person when helping me manage my symptoms, I knew I’d found a good fit – a back-and-forth dialogue and exchange of information.

For anyone out there with narcolepsy who wants to start being a better advocate for themselves, I want to share important tips from my own experience:

• Ask your doctor questions from a place of trust and confidence, understanding that you both have a shared goal.
• See your relationship with your healthcare providers as a partnership that can help you find inroads to new tools and resources.
• Before every appointment, start with an honest inner dialogue. Ask yourself if you’ve followed the doctor’s previous recommendations and what next steps you might be willing to take.

Self-advocacy does not end in the doctor’s office. I also needed to educate myself if I wanted to speak up about my disorder. I read everything I could online about narcolepsy. I found narcolepsy support groups and connected to Internet forums. Finding in-person support was a challenge. So, I began creating my own opportunities to connect with others living with narcolepsy. In these relationships, I found that even if we didn’t have all the solutions, we could learn from each other’s perspectives. Between finding my voice with my healthcare providers and reaching out to others living with narcolepsy, I became and continue to be my own advocate. And speaking up has helped me take back control of my life.

US-NAR-2100234/Dec 2021

Gina

Living With Narcolepsy Day to Day: Winter Mornings

I’ve always wanted to be one of those moms, the kind that gets up at 5:30 in the morning. Maybe drinks a cup of coffee, goes for a walk and checks email all before the kids wake up. That quiet time in the morning always sounded like nirvana to me. Living with narcolepsy and excessive daytime sleepiness (EDS) isn’t always like that. For me, it can be more like a winter morning, when it is dark and cold, and you are under a heavy blanket. You just don’t want to get up. Then out of the darkness you hear: “Hey, Mom. You need to get up. I can’t find my favorite jeans. I need a lunch today. Take me to school. Have you seen my jersey?”

As someone living with narcolepsy, there are day-to-day challenges that I face. Right now, I feel like my symptoms are being managed well, but making plans with friends can still be difficult. Mornings, even on beautiful summer days, can be hard on some of us that are living with narcolepsy. Some days, I might nod off in the middle of eating dinner with my family due to my excessive daytime sleepiness. I’ve even fallen asleep at a rap concert. But mornings are the worst. No matter how much “sleep” I think I’ve gotten, the mornings always drag.

Over the years, I’ve found there are things I can do to help lessen some of these day-to-day challenges of excessive daytime sleepiness. Following good sleep hygiene, including a regular sleep schedule, especially naps, is essential. I’m a big believer in yoga and meditation. I’ve given up drinking alcohol – even a glass of wine with my friends can be disruptive to my sleep schedule. I’ve reduced the amount of sugar and carbs I take in. Most importantly, I’ve learned the importance of expectations and communication. I think by now my kids have gotten used to their mom not having a homemade breakfast cooking when they wake up in the morning. I was a little better when they were younger and they needed supervision every moment they were awake, but now that they are teens, and I’m a whole lot older, I do give myself a little more grace in the morning and save my energy for more important times. Helping the kids with their homework, supporting their sports, and my job (which buys those boxes of cereal they pour for themselves in the morning), are higher on my priority list than a quiet cup of coffee and checking email before they wake up. Communicating to my kids that mornings are on them has helped me manage the rest of my days. At least until someone loses their favorite jeans under the bed.

US-NAR-2100233/Dec 2021

Andre

My Days Living With Narcolepsy: Self-Care Helps

Imagine the most exhausting morning you have ever experienced. Remember how heavy every muscle in your body felt. Even the slightest movement seemed nearly impossible, let alone the idea of getting out of bed and starting your day. Picture that every day, maybe several times a day. Living with narcolepsy can be like that.

Some days I feel such a deep exhaustion, no matter how much I have slept. On occasion, I can’t even remember sleeping at all. Time slips away, and it can become difficult to distinguish between my waking life and a dream. I can feel gaslit by my own body, living a double life that feels unreal – hoping that I don’t make a mistake in either my waking life or my dreams. Living with my narcolepsy day to day can be hard, and that’s why daily self-care is so important.

My excessive daytime sleepiness and cataplexy impact my daily routine, whether working or taking care of my kids. To get through each day, I’ve focused my priorities. My time and energy are precious. I make the most of both when I can. I try to stay engaged with as many things as possible. I value play as much as I value more serious matters. I try to incorporate purposefulness and positivity into everything I do. I extend as much grace to myself as I can. I am mindful of when and where I eat, and how certain foods and drinks make me feel. I believe strongly in self-care, and I cherish being in places and around people who make me feel supported and welcome.

US-NAR-2100238/Dec 2021

Matt

Navigating the Holidays With Narcolepsy: From Fear to Courage

For many, holidays hold a few constants: family and gatherings. Both the presence and absence of family can elicit strong feelings. The stress of gatherings or the lack thereof can bring out strong emotions. The holidays can be a huge trigger for my narcolepsy symptoms, in particular excessive daytime sleepiness (EDS) and cataplexy. For years I struggled with an increase in sleepiness coupled with, at times, embarrassing loss of muscle tone. It wasn’t just negative emotions that brought about struggles, but also the positives ones. A hug from mom can be as impactful as the stress of holiday shopping.

When I was able to stop and examine what I could do to prepare for the holidays, the fear transitioned to courage. The excitement and joy of the holidays are as likely to trigger symptoms as the stressful moments, so it’s important for me to plan for my symptoms to interrupt the good times as well as the challenges. A quick check-in with a peer living with narcolepsy from one of my groups helps me stay accountable. Verbalizing my proactive approaches while supporting another helps me to feel “not alone.”

There is one approach I have found extremely helpful: getting out of bed. The biggest accomplishment every day is getting out of bed. Holidays are no different. Every successful day starts with my feet on the floor. It’s a challenge many days, but a reasonable goal. Success begets success. The holidays will come and go, and it is my choice to either embrace and celebrate or dread and despair. Like getting out of bed every morning, purposefully turning that fear into courage is the first step toward taking back control of how I experience the holidays, or any time when the pace of life can cause my EDS or cataplexy to interrupt the day.

US-NAR-2100236/Dec 2021

Matt

Navigating the Holidays With Narcolepsy: Building a Narcolepsy Toolbox

For years, the lead-up to holidays was full of anxiety and fear—knowing that disruptions were coming and feeling powerless. I had to shift the focus from dread to anticipation. I decided to approach the holidays thoughtfully—I knew what was coming, and that served as the foundation of my strength. There were going to be challenges, so I had to build my toolbox to overcome them.

Three of the strongest assets in my personal toolbox are saying “no,” naps, and cultivating a strong support network.

I had to decide who I was going to spend time with. That meant setting boundaries, limitations, and realistic expectations. I kept my foundation of support strong. My family of choice includes friends and family who add to my enjoyment of the holidays. Limiting stressors in my life meant using a word hard for many: “no.” To stay healthy, I had to realize there are more events than I can attend. Saying “no” to non-essential activities helps.

No matter how thoughtful I am about my schedule, sometimes the narcolepsy nemesis comes strong at events I choose to attend. When that happens, I reach for another asset in my toolbox, naps. Naps help for multiple reasons: they allow me to recharge while allowing me to stop and regroup. I keep a close eye on nap requirements and try to communicate accordingly. It has served me well to map out the best nap spot beforehand and proactively alert the host that I may need to step away.

There is only one person who looks out for my health all the time: me. So it makes sense that I had to create my own toolbox of tips and habits that help me navigate the holidays, or any of the busier times of the year when social requirements can be challenging for someone living with narcolepsy.

US-NAR-2100235/Dec 2021

Gina

The Search for an Answer: My Diagnosis of Narcolepsy With Cataplexy

Right before I was diagnosed with narcolepsy with cataplexy, I was a full-time working mom and wife. Life was chaotic, stressful, and at times unmanageable. Good times were sprinkled in – the birth of my children, watching them play sports, spending time as a family – but there was always this overlying chaos, a deep and constant stress and exhaustion. There was also constant guilt gnawing at me because I was watching other moms drop their kids at school with perfectly packed lunches, matching socks, and styled hair. Those moms would head off to their exercise class while I rushed back home to sleep a little bit longer before work. Not to say my kids were neglected, but some days school lunches had to do even though the girls preferred homemade.

My journey towards a narcolepsy diagnosis began when I mentioned symptoms of excessive daytime sleepiness (EDS) to my OB-GYN after having my second daughter. He immediately checked my thyroid and told me it was low and that may have been my problem. Fast forward a little while and I was still experiencing excessive daytime sleepiness (EDS), so this time I went to my family doctor. I was also experiencing sleep paralysis and hallucinations – which I later found out were hypnopompic and hypnagogic hallucinations – but I didn’t mention this because it sounded so strange. I thought that it might be just bad dreams. At first, I was diagnosed with attention deficit disorder (ADD). After working with my doctor to manage my symptoms, my excessive daytime sleepiness (EDS) improved, but my other symptoms continued to be an issue, so I kept searching. Eventually, I had my first sleep study conducted. After multiple tests, I received a diagnosis of narcolepsy with cataplexy.

After diagnosis and my doctor’s help, I felt a little bit of hope. No, I wasn’t crazy, lazy, or just too busy – I had narcolepsy. It explained so many years of my life. From falling asleep at the dinner table, taking naps after classes, nodding off during concerts in college, I was always the sleepiest of my friends. Having my eyes opened to narcolepsy has brought me some much-needed peace.

US-NAR-2100231/Dec 2021

Andre

My Narcolepsy Diagnosis: It Didn’t Change Everything

I love my family, and I love to cook. I worked hard as a chef. When I was home, I enjoyed making dinner for the kids and reading them stories. But I started to notice that I would nod off while sharing a book or playing games with my family. At that time, I didn’t know what was happening. I was working, trying to provide for everyone. I had convinced myself my excessive daytime sleepiness was nothing more than needing a little extra sleep. Over time, though, I couldn’t ignore the fact that I wasn’t able to do what I was routinely doing before.

Around the time when my excessive daytime sleepiness worsened, we moved and I started a new career. I was very interested in my new work but I struggled to stay engaged, or even awake. Not long after I started, a co-worker pulled me aside. He asked me if I was okay. I said, “of course I am.” His eyes narrowed. He had noticed me falling asleep while working.

When my co-worker called out my excessive daytime sleepiness at work, I felt defensive at first. Then he shared that he had a sleep disorder and suggested I get a sleep study. Thanks to him noticing and caring, I received my diagnosis of narcolepsy shortly after the study was conducted.

At first, I was, like, “What!?” I’d only heard that word, narcolepsy, in the movies. I was shocked. I felt like this disorder would cause me to stop everything I was doing. I begged the doctor to tell me my options. At first, I was in denial. It was new for me and for my family. As I learned more about narcolepsy and connected with others with the disorder, I realized I was still a father. And I was still a chef. I just needed a plan that included all of the things I loved.

US-NAR-2100237/Dec 2021