“You picked this doctor because she had time to see you. Thank God for her time. The words she spoke will change your life.” Diagnosis: Narcolepsy!
I am writing this blog post in response to Julie Flygare’s request for fellow persons with Narcolepsy to participate in her “Dear Diagnosis Blogathon”. Julie is a strong Narcolepsy advocate through her work with Project Sleep, and I am honored to add to her collection of stories.
“Happiness is being diagnosed with Narcolepsy” – said no person ever on the day of the actual diagnosis. However, almost 20 years after getting the initial news I am able to find happiness in my Narcolepsy and how it changed my life.
(This post was originally published in November 2013 and updated in September 2023.)
Signs of Narcolepsy
Dear Tove,
It is late 2004 by the time you are ready to read this letter. This year has been a downward spiral of stressful and life-changing events for you personally. Your home life took a turn for the worse and after making some drastic changes you are now getting back on your feet again. You are working at a full-service brokerage firm, trying to be the next great Financial Advisor mass-produced by their training program. Your circle of friends has changed, and you are just trying to make it from one day to the next without… well, simply without falling asleep!
Lately, you have been feeling much more tired than normal – no, tired isn’t the right word. “Sleepy” is more like it. Anywhere and any time seems appropriate for a nap! Thankfully you have realized why the ladies’ room is also referred to as the “restroom”! Surely everyone must utilize these facilities for a quick cat nap during the day – you certainly do! These cat naps become more spontaneous and unpredictable until one day you fall asleep in a client meeting, a small intimate setting between you, your work partner, and Mr. and Mrs. Retiree.
Fast forward to “the talk” with your employer where he tells you that you have to start getting more sleep at night and spend less time being hungover. This is rather ironic because you have been too tired to go out at night, so it certainly isn’t because of your partying ways that you seem to doze off.
If the Shoe Fits, You Might Have Narcolepsy
On this monumental fall day in 2004, you are sitting in your new general practitioner’s exam room. You have seen her once before, a young female doctor, whom you decided to consult just to prove to your employer that you are deficient in some vitamin – and that is the logical cause for your sleepiness. The doctor enters the room with all the results from the full blood workup you had done last week. She smiles and tells you that everything looks normal and fine. Your heart sinks, you had hoped for a simple reason with a quick fix to your problem.
You initially chose this doctor, not because of her credentials, or because she was recommended to you, but simply because she had an available time slot for an appointment. Thank God she had the time because the next words out of her mouth will change your life. She smiles very sweetly and says these words to you: “I am only a few years out of med school, but I remember learning about this particular sleep disorder that I think you may have – NARCOLEPSY! We only spent a few hours on it, so I will need to refer you to a specialist for further testing. But here are some printouts. Please read them and tell me what you think!”
You look at her and start laughing. The only thing you really know about Narcolepsy is from the movies, where people fall asleep facedown in their plate of mashed potatoes – that CLEARLY isn’t you… or is it?
You start reading her handouts, reviewing the symptoms one by one:
- extreme daytime sleepiness – check
- sleep paralysis – check
- cataplexy – check
- hypnagogic hallucinations – check
- automatic behavior – check!
Tears stream down your face and you look up at her with a quiet and humble “Thank you. This IS it!”
The Verdict is: Narcolepsy with Cataplexy
Later a sleep study will confirm the doctor’s initial diagnosis of Narcolepsy with Cataplexy. The neurologist even calls you a “textbook case”. Wow, you have never been a textbook case of anything in your life, never mind a rare sleep disorder! Suddenly your whole life makes sense. All the things that were quirky to others, but in your eyes were normal were due to your Narcolepsy. Your “childhood epilepsy”/ episodes of falling and being unable to move for a few moments were cataplexy. Your sleep paralysis was not a sign that you were losing your mind, but merely REM sleep taking over your body, as you were falling asleep, yet still awake. And the cat naps in the restrooms… well those were not as normal and widespread as you initially had thought!
Managing Life with Narcolepsy
You will spend the next year completely consumed by your diagnosis. Narcolepsy will truly take over your life, as you try to figure out how to minimize your sleepiness trigger, which is stress. You will change career paths and get out of sales and back into the administrative side of financial services. You throw yourself into reading, yoga, acupuncture, meditation, healthier eating, better sleep hygiene – anything and everything that may reduce stress and therefore bring your Narcolepsy back to a manageable point. You start taking Provigil (the Narcolepsy medication of choice at that time) and you inform your employer that you must take daily naps for about 20 minutes.
You become an open book about your diagnosis, sharing your story with everyone who crosses your path. Informing people and warning them of your sudden sleep attacks is another way to reduce stress and take pressure off a situation – all in an attempt to hopefully avoid a spontaneous nap.
After a year of trying to find yourself and figure out how this diagnosis will affect your future, you find Mr. Right, Mr. Understanding, and Mr. Accepting – all wrapped up in one tall handsome man. You will marry him, you will have children with him – many actually. He will support you and appreciate every aspect of you. You will have a great career, make new and understanding friends, and you will go on to help others through their medical journeys because of your newly garnered understanding and compassion.
You will find time for naps, love, and lots and lots of happiness. Narcolepsy will force you to slow down and change your life and it teaches you to TAKE LIFE ONE NAP AT A TIME.
Thank you for this fantastic “Dear Diagnosis” letter, Tove. I really like how you explored the diagnosis process and first year of adjustment in detail. Your reassuring ending will help others know they can live happily with narcolepsy. Thank you thank you thank you!
My thanks goes out to YOU, Julie! For all your hard work for the Narcolepsy community!!! I am proud to be a part of your work. Let me know if I can ever be of further assistance!
Wow, thank you for sharing. I didn’t know anything about narcolepsy, what a rarity.
This is the most positive account of dealing with the diagnosis that I have found – and I have been looking all over for someone to let me know they’re doing fine and it isn’t going to be something I have to think about and resent every day for the rest of my life. Thank you for your uplifting post, it’s really made me feel better, for today at least.
Thank you SO much for reading and commenting on my blog post. I can honestly tell you that it did take me a year to “get over” my diagnosis, for it not to take up every spare ounce of energy and free time that I had… but then I looked around and realized that the people who supported me in this journey didn’t care that I couldn’t stay out late or schedule too many things on my calendar. The people who mattered understood… and slowly it became a way of life to leave a party early, not drink, get sleep and take care of myself… and once it became habit life was good again. Are you newly diagnosed? Please let me know if there is anything I can do for you. Life IS good – even with a narcolepsy diagnosis – at least we have answers… and we know it’s not progressive or worse… its adjusting to the “new normal” that can be hard… and that’s expected and OK. Stay strong!
As a fellow mother with narcolepsy, I loved your post! I was diagnosed at 14 and am now in my early thirties. I stopped read posts of fellow narcoleptics long ago b/c they always focused on just the negativity. Don’t get me wrong, living with this disorder is no walk in the park but it isn’t the end either. Thank you for putting a positive post out there so that those new to diagnosis don’t feel so doomed. A full and happy life is attainable for all of us. We just need a few more naps, good doctors and a lot of determination.
OH MY – Natalie – thanks for finding me! You are right – a diagnosis of Narcolepsy is NOT the end of everything good – it add challenges. But I also feel that the time before diagnosis was harder. Now we know what we are dealing with – which makes it easier to treat and make life style modifications! BEST OF LUCK to you! THANK YOU for writing!
We are typically tired and cranky.
I stumbled upon this post while looking for information on narcolepsy and it was a breath of fresh air. This past January I was diagnosed with narcolepsy and your post might just be the first positive thing I have read. Thank you for supporting my belief that narcolepsy will be a part of my life but not my whole life!
Samantha – I am SO glad you found my blog and I am really glad you were diagnosed. I am sorry you have Narcolepsy, but at least you have answers to a lot of unanswered questions. There IS life and happiness after a Narcolepsy diagnosis… it does stink and some days are worse than others – But… it is not the end of the good times. You will over time learn how much you can handle, so you just have to learn to read the signals and respect your body’s voice… Please let me know if you have any questions!
I found this on my Pinterest group board and I had to pop over to say Hi. Narcolepsy doesn’t just run in my family, it practically gallops. Even though I’m the only one who was formally diagnosed, I see clear signs of it in both my parents, my husband, and both of my sons as well as several cousins and other relatives. Like you said, it’s a pain in the neck but it’s manageable. I think it’s gotten less of a problem as I’ve gotten older. I do notice that little sugar bursts from tic tacs, lifesavers, etc. are helpful to keep me awake in church, meetings, or other potential trouble situations. I’ve also started trying out the 20 minute nap scenario at work – after 24 years! It does help make the afternoons easier. I’m just grateful I don’t have the severe form of it.
Thank you so much for stopping by, Adrian! It’s such a good tip with the little bursts of sugar – that’s exactly what I do too. Although meetings in the afternoon are just impossible for me – there is NOTHING that will keep me awake. Do you have cataplexy too? I was diagnosed in 2004 and I have JUST NOW started to have cataplexy. It’s the strangest feeling in the world and I am still adjusting to it. I am glad to hear that yours is manageable and that it has gotten better over the years. Here’s to “taking life one nap at a time!”
I’m 21 and developed narcolepsy w/ cataplexy at 15 but didn’t get diagnosed until the beginning of this year. In high school, my classmates and teachers thought I was on drugs. My GPA wasn’t what I wanted it to be (too tired to study/pay attention in class. I felt so horrible about myself. I also gained a lot of weight during that time. I was on antidepressants that weren’t working. I’m so happy to read this (and your other narcolepsy related posts).
P.S. THOSE DARN SLEEP STUDIES WERE EXPENSIVE!
I am so glad you found my blog. BEST OF LUCK to you – I am so glad you have a diagnosis. My boss thought I was hung over – it’s so sad when people don’t believe there is actually “something going on”. Thankfully you have answers now – Let me know if you have any questions. I am happy to help. Did you find some good Narcolepsy groups on Facebook yet?
I actually don’t have a Facebook account. I like to use a narcolepsy forum support (http://forums.narcolepsynetwork.org).
Sorry for commenting on an old post, but aside from knowing you have narcolepsy, are there benefits to getting diagnosed? My husband probably has narcolepsy and I’m teetering between getting him diagnosed and just letting it be. Are there consequences to getting diagnosed? Like, do you have to disclose it for a driver’s license?
Btw, I like the last bit. 😀 I have delayed sleep phase syndrome, and he’s got narcolepsy so we’re a pair. I think my first baby has both, so she’s going to be so grateful later (sarcasm).
Thank you for reaching out to me. I understand your hesitation in getting an official diagnosis, but I feel there are only positives to knowing exactly what is going on. I am in Florida and we are not required to register with the DMV that we have narcolepsy. It has not affected my driving record or insurance rate at all.
Personally, I am able to manage my Narcolepsy (and now also Cataplexy) without medication, but I still see a sleep specialist every few years – at least to hear if they have made any advances in the medical research and treatments.
Good luck – I think it would be helpful to get an official diagnosis – and ruling out anything else that might be going on!
Have you ever tried to used medical cannabis? I read that Medical marijuana is a very old medicinal herb that has been used for thousands of years to treat a great variety of ailments. Cannabinoids, have been shown to have anti-bacterial, anti-cancer, anti-inflammatory and anxiety reducing properties that have helped a great deal in several illnesses, including sleeping disorder. Like this https://www.ilovegrowingmarijuana.com/blue-haze/. Studies have shown that cannabis can help treat sleep disorders. Here are the ways:
Reduce the amount of time it takes to fall asleep
Help experience fewer times waking up at night
Help people suffering with PTSD to have fewer nightmares
Alternatively, they’ve also found new ways to infuse cannabis on food and beverages. If this is true I can’t find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks
Thank you for asking. I have never tried medical cannabis, so I don’t know how it would affect me as a person with Narcolepsy and Cataplexy. Perhaps others will comment here with their experience.