What is my secret? Am I a “typical” person with narcolepsy?

by julie on August 13, 2016

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I received the following comment on my recent blog post and wanted to respond here.

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Dear N. Leptic,

Thank you for taking an interest in learning more about my experience with narcolepsy. First of all, I am so sorry to hear about your challenging experience with narcolepsy. It sounds like you are facing some very real and significant adversity. You also seem like a strong and courageous person who is seeking out information from your doctor and continuing forward best you can despite facing major challenges. My heart is with you.

What’s my secret?

I don’t have any big secrets about how I cope with narcolepsy. In fact, I wrote a book called Wide Awake and Dreaming: A Memoir of Narcolepsy that documents my experience fairly honestly and in detail. I have stepped outside of my comfort zone and given up a large amount of my personal privacy in order to share my experience with this condition, so no big secrets here. Also, I am currently co-founding a leadership program called Rising Voices of Narcolepsy to help other people with narcolepsy effectively tell their story.

If you’re interested in my exact treatment regimen, I will share it here, but I must emphasize that what works for me may not work for you and to always consult a doctor about treatment options. I am not a doctor. Currently, I take 3.5 grams of Xyrem twice a night and 15 mg of extended release Adderall once a day in the morning.

I am also prescribed 25 mg pills of venlafaxine to take on an “emergency” basis for my cataplexy, if my cataplexy is really bad. In these cases, I take about 1/8th of the pill, as I’ve found this is enough to reduce my cataplexy without having terrible side effects. So, maybe about 5 – 10 times a year, I take 1/8th of 25 mg venlafaxine to relieve my cataplexy.

In addition, a daily nap (or two) is an essential part of my treatment. Some people with narcolepsy find naps restorative. Others do not. I am one of those people who finds some important temporary relief from 15-30 minute naps and I *try* to take them daily.

Am I a “typical” person with narcolepsy?

NO, I am NOT a typical person with narcolepsy. Here’s why:

1. I don’t believe a “typical” person with narcolepsy exists. I have met hundreds of people living with type 1 narcolepsy with cataplexy, type 2 narcolepsy without cataplexy and idiopathic hypersomnia and I haven’t met two people with the same experience. People’s symptoms and responsiveness to treatments vary significantly. Furthermore, beyond narcolepsy – people’s life circumstances are so vastly different.

In training to be a speaker, I’ve learned to speak to my personal experience only, and I try to avoid using any extreme sweeping phrases like “all”, “none”, “everyone”, “no one”, “always” or “never”. I’ve learned that these terms can be polarizing, and may make a speaker’s message less credible in the opinion of the viewer/listener/audience member. In Rising Voices of Narcolepsy, we will train speakers and writers on using first-hand experience storytelling.

2. I have responded well to treatments. I am acutely aware that some people with narcolepsy face intolerable side effects and tolerance issues. I have experienced strong side effects but I have managed to stay on treatment now for 9 years and I am extremely grateful for the pockets of productivity I have found thanks to the fact that I have responded pretty well and found a treatment regimen that works for me right now.

3. I had many advantages when I was diagnosed with narcolepsy.

  • My family was upper middle class and helped pay for treatments when my health insurance benefits ran out quickly and before my COBRA health insurance kicked in.
  • I was a law student with a strong educational background and the Dean of my law school was extremely understanding and accommodating.
  • I had an expert neurologist who worked with me for years to tweak my treatments and find a tolerable balance that works well for me.
  • I have no other major health conditions to contend with.
  • I had a wonderful therapist who helped me navigate the incredible sense of loss, isolation and anger I felt toward narcolepsy. My therapist also helped me process my ultimate decision not to practice law after graduating, something that was really hard for me to come to terms with at the time.
  • I experienced symptoms for about 3- 5 years before being diagnosed, which isn’t great, but others have gone longer without diagnosis or with misdiagnosis. These delays increase the chances of narcolepsy causing safety issues and/or affecting one’s personal and professional life before one even knows what one is dealing with.
  • I was diagnosed in 2007, when some of the current first-line treatments were already FDA approved and available. While these options are NOT perfect nor right for everyone, there were even fewer options available in the 70’s, 80’s and 90’s.

Even with all these advantages, narcolepsy brought me down to an all-time low. I watched narcolepsy steal my ability to work long hours, something I was “known for” in high school and college. I watched this sneaky insidious neurological condition wreck havoc upon my waking and night life, but all the time behind the scenes, invisible to those around me. And I watched in amazement that my very real neurological condition oddly shared the same name as some other thing called “narcolepsy” that was socially acceptable to laugh out loud at on TV and in movies.

So I wondered, “What about people that don’t have my same advantages? How badly might this affect others who don’t have the same infrastructure and safety net that I was lucky to have?” 

This is one of the reasons I chose to give up my privacy and raise my voice, because I am aware that I have had significant advantages and while narcolepsy affects me daily and has been absolutely life-changing, some people are worse off. This breaks my heart and is one of the reasons why I choose to raise awareness and change perceptions.

One point of clarification: narcolepsy is not my career. I feel privileged and honored to work full-time at an amazing pancreatic cancer non-profit organization and volunteer on nights and weekends to raise awareness of narcolepsy and run Project Sleep. However, do not be deceived to think I took a magic carpet ride to get where I am today. Like everyone else, I face adversity in my life, some related to narcolepsy, some not. I don’t think we need to tally our scars against one another, but rather I’d like for us to stand together and support one another as we each try to pick up the pieces of our lives best we can.

I do not know what challenges lie ahead for myself, for those I love, or for others living with narcolepsy. I do not know if my medication will stop working tomorrow or if I will discover a new source of joy and positive energy this afternoon. I am doing my best with what I’ve got today, I think that’s the best we can all do.

In closing, I will leave you with some of the best advice I ever received: “If you don’t like what someone else is saying, stand on your own platform and speak louder.” This is what I did 7 years ago when I was fed up with seeing depictions of narcolepsy in the media and movies that didn’t resonate with my experience, I started this blog at my initial platform to speak my truth. So I hope you will consider turning your passion into action and looking for ways to raise awareness in your community because YOU MATTER. YOUR VOICE MATTERS. YOUR STORY MATTERS. And I am cheering for you.

Sending wakefulness your way,
Julie

{ 21 comments… read them below or add one }

Sarah with NwC August 13, 2016 at 8:18 pm

Thank you, Julie, for your honesty about your experience, your courage to go against the established mainstream understanding of N, and for being a voice for many of us who aren’t in a position to speak out.

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Erin August 13, 2016 at 9:20 pm

Your response is validating and informative, not to mention respectful to the individual who wanted to know your “secrets”. I personally was a bit put off by this individual saying you were an “outlier” because you’re not a “typical” narcoleptic. I don’t have cataplexy. Does that make me an “outlier” too? But I have debilitating EDS to the point where my sleep latency for my MSLT was 0.7 minutes. Not even a full 60 seconds!! I joked that I could “fall asleep on demand”. I was also taking a REM suppressant at the time and couldn’t wean off of it in time for the study like they had wanted me to, and I took it in the morning so it should have suppressed REM during my study, yet I went into REM in 2 out of the 5 naps.

So what makes a “typical” narcoleptic? Does a “typical” narcoleptic have to have such debilitating symptoms that they LOOK as sick as they FEEL? Do they have to be on disability, unable to work, or mow their lawn? Because I don’t fit that description. Ever since starting Xyrem and Adderall XR 20 mg in the mornings with 5 mg of immediate release Adderall for the afternoons for any breakthrough sleepiness, I have gone from falling asleep at work, almost getting into an accident during rush hour traffic when I dozed off driving and was woken just in the nick of time by the bumps on the side of the highway (which were made for this exact reason, apart from adding some traction during inclement weather if people are sliding off the road), guzzling two to three cups of coffee in the mornings in an attempt to stay alert enough to do my job even halfway decently, and coming home to nap for hours at a time yet never feeling rested, having sleep paralysis and hypnogogic dreams that were terrifyingly real and scared me to my core at times. I went from this to slowly being able to be alert at work for 6 hours, still needing some coffee in the morning for an extra boost, but otherwise feeling fairly awake (well, when your “normal” was tilting your head back as far as you could while driving but still being able to see yet the angle of your head made it difficult for your eyes to close because the strain of doing so was uncomfortable, slapping your face while driving just to have something to alert you, having your windows slightly open on the coldest days in the winter so that the cold air keeps you awake, leaning up against the wall in the bathroom at work just to “rest your eyes for just a minute” only to realize you fell asleep for about 5-10 minutes once your body jerks yourself awake from a rather vivid dream) “fairly awake” becomes life changing in comparison to what you had once considered “normal”.

I never knew life any other way then merely trying to survive the exhaustion thinking “I’m in high school, I wake up at 5 am every day OF COURSE I am tired and can’t stay awake during certain classes,” or “I’m in college, I have classes all day and tons of homework keeping me up late at night, OF COURSE I feel so tired that I nap in between any class where I have time to do so”. That’s just what life was. I thought that’s the way everyone was too. Everyone around me seemed as tired as I was so I wasn’t a special case.

Now that I have felt better than I ever have in DECADES (don’t get me wrong, Xyrem is NOT consistent and my insomnia is FIERCE so that even Xyrem doesn’t always help me fall asleep, so I still have some terrible days, but you don’t see that on the surface when you look at me…I’ve learned since I was 15 when these symptoms started, and I am now 33, diagnosed at 29 when someone FINALLY took me seriously and listened to my concerns about my sleeping patterns and FINALLY thought that it might be something more than just “depression”…I learned how to “fake it till you make it” when I’m so tired I feel like a damn zombie…I still have days where I feel like I could sleep standing up). But now that I have reached a NEW “normal” whenever I have issues with insurance and have happened to run out of my meds, and I am back to pre-narcolepsy treatment functionality, even for 2 or 3 days, I will reach a serious low point because now that I have been accustomed to my “new normal” I don’t even remember how to fake it when I have been forced to endure pre-treatment functionality. I get angry and miserable to be around and I become “that person” again and I strongly dislike “that person” before treatment.

I have met a few people with narcolepsy and talked to many, many more. And not a single one has had experiences EXACTLY like mine or EXACTLY like someone else’s. I am envious of Julie’s ability to be as productive and effective as she is, but I am PROUD of her because she wrote a book that allowed me for the FIRST time after being diagnosed, to really and truly feel understood. I’ve sent private messages to Julie and she takes the time to answer them. I have thanked her for sharing her very real, and very raw, story of her journey with diagnosis, grad school, losing her number one supporter, and running a marathon to show that she won’t let this awful disease get her down. She shares her very real experiences and I really, truly, hope everyone with narcolepsy reads this because I can guarantee that in her story you will find SOMETHING you can relate to. No, I’m not saying you will find that her symptoms and experiences are EXACTLY like yours or are the symptoms of a TYPICAL narcoleptic. Instead, it’s her raw emotions and the grief that comes with this disease, it’s the way she tells it like it is and shares herself so openly with all of us that really makes her my idol.

She’s not perfect. No one is. And anyone with narcolepsy knows exactly what it’s like to have this invisible disease because, while I am not making this a generality, for many people with narcolepsy we have had to learn how to hide what we are feeling because we have been told so many different things whenever we say, “I’m exhausted”, that we have given up trying to explain it and instead push that part of us aside so that we can LOOK like everyone else. That isn’t the case for everyone and I know that, because the most important point to Julie’s response is that there is NO SUCH THING as a “typical” narcoleptic.

I really hope that this individual uses their passion to advocate for themselves and others. I admire their drive and their persistence with working with their doctor to find the treatment that works best for them, and my heart goes out to them with every tolerance gained after medication worked wonders for them. I hope that they will be a part of Julie’s Rising Voices of Narcolepsy because this person’s story NEEDS to be heard.

Well done, Julie. Well done.

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kathryn harwood August 13, 2016 at 9:35 pm

I agree with you, Julie. I was so lucky, after my diagnosis, to be in a sleep disorders support group in Toronto. Noone is “typical”. I am lucky that I have only mild narcolepsy and don’t have cataplexy as severely as you. I have not been on medication for 20 years, living a simple lifestyle and accepting my limitations (grudgingly). I also quickly dump “friends” who criticize or joke about the condition. I was a free-lance dental hygienist. I could work only 4 days a week and took “power naps” in my dental chair. You just have to be creative. Sometimes I look on this as a gift since it often gives me spiritual insights. When I was downhill skiing at a mountain, I would ask to nap on a stretcher in the Ski Patrol hut. Most people are helpful.

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Geraldine Gruszczyk August 14, 2016 at 1:38 pm

Impecable!

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Kathy Devita August 14, 2016 at 3:23 pm

Hello Julie. Fate is funny. I swear this blog is so important to me. Just today I thought about N and my insane childhood. How many people told me to “get over” my childhood, that other children went through worse, and I realized how the heck could I ever do that!! My n nightmares take me back to those childhood fears with an unbelievable reality. Every heartache gets repeated, every mistake I ever made comes cruelly back. Of course in my nightmares I may be 12 years old or 40. I may be on a boat or field…nevertheless the main theme is the same as something that happened decades ago. I wake up sick sometimes, or crying. At 71 I still hold onto my dog for comfort. Mainly I wanted to say Thank You again, because you posted your answer saying a “better” childhood and life did have an impact on you. I know that because of my childhood problems I DID have the strength and determination to work and raise my kids as best I could. But gosh, I’m more tired than I ever was, now. Believe it or not I cannot find a therapist, physcologist (whatever) that has knowledge about Narcolepsy and depression etc. (Supposedly there is one in Miami and someone is trying to find the name.) I am in Broward and I, of course, do not drive too far.. BUT I CANT find any doctors that fit that bill.. I don’t need a diagnose for N. I need support for my “head”. Your blog has at least let me know I am not totally crazy… and again.. not totally alone..

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Kara L August 14, 2016 at 3:37 pm

You’re response is wonderful. The comment even made me feel awkward with my own life. I have found Narcolepsy groups on Facebook with so many amazing people and the biggest thing I notice, NO ONE has the same issues. There is no such thing as “typical” when it comes to narcolepsy, cataplexy and idiopathic hypersomnia. I never feel rested after a nap. I get very anxious if I sleep too much because so much of my life has been sleep and I don’t want to miss my life because of sleep.
I am working and going to school with narcolepsy and idiopathic hypersomnia. I get overwhelmed by the idea of “what if” I can’t be independent someday or “what if” I have a child someday and can’t wake up to care for it. What’s and ifs plague my life but I shove them down and keep going. I have an amazing team of medical professionals that I can contact anytime I need them. Therapy is one of the biggest things that help.

Julie you don’t have to ever defend your life or symptoms. I’m glad you wrote your book but we are all different and unique. If someone doesn’t understand that, it’s okay.

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Sara Kowalczyk August 16, 2016 at 2:48 pm

Hi Kara,

I don’t know if you will check these replies again, but if you do, I am studying Narcolepsy and IH for my doctoral degree in neuroscience, and I have only come across one other person who has been diagnosed with N and IH. If you could comment here or privately about your experience [whether it be chronologically based or symptom based], as well as if the double diagnosis was driven by need for additional accommodations, I’d really appreciate it. You can reach me at sknarnet@gmail.com. Thanks,
Sara Kowalczyk

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Anne Shusterman August 15, 2016 at 6:26 am

Julie,
As a mom of child with narcolepsy I continue to applaud your voice, advocacy, and commitment to educating people about what narcolepsy looks like and hopefully earlier diagnosis. Thank you.

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Dorothylou Sands August 15, 2016 at 7:14 am

I have learned from our support group in L.A. that almost everybody is effected by narcolepsy in a different way. Also medication reaction is different to different people. I am 82 years old and have had Narcolepsy since I was 12. No doctor I went to seemed to know why I slepted until I was almost 30. I learned to live with it. My biggest disaster was not being successful in my original attempt with college. I later graduated when I was 56 years old. I only take medication if I am attending a class or lecture. I take short naps if I have to drive very far. The more interested I am in something lessens the chances of my falling asleep. I sleep every Sun. during the sermon in church.

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Heather August 15, 2016 at 10:41 am

An excellent and respectful reply Julie – well said indeed! Thank you. 🙂

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Heather August 15, 2016 at 10:41 am

p.s. And a fair question asked also!

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Unell Hobbs August 15, 2016 at 7:38 pm

My daughter just completed Nursing School with a 4.0. and is now a Registered Nurse. She works a 40 hour week with 12 hour shifts (both days and nights). Most people who didn’t know her during, the horrible asleep years, don’t know she has Narcolepsy. Thank God for a doctor that finally said “why haven’t you done a sleep study” and Xyrem she was able to get to where she is today. Just like Julie she has developed a routine that works for her right now. Please note the word “now”. The routine is always being adjusted. It is a life style were she has to make choose about what is realist for her to accomplish. She has to say no to things she would really like to do because they can not be worked into when you need to eat “so you can take your medicine” schedule or she needs to take a nap. Narcolepsy is not a linearly disorder. There are so many peeks and valleys unless you live with someone you might not see the bad times. Julie has been a great role model for my daughter and I. We met her right when she was starting to get a handle on her narcolepsy and it gave us such hope that there was life after narcolepsy. She is our hero!

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Sara Kowalczyk August 15, 2016 at 9:04 pm

My one addition that you didn’t mention, and you also share with Nicole Jeray (famous N-golfer in advocacy too), but others too in the narcolepsy advocacy world:

Post-puberty development of NT1 (narcolepsy with cataplexy)

The longer one is healthy and “typically developing” may, in addition to everything else you described, contribute to your abilities, dedication to, and reasons for becoming such wonderful advocates.

You also didn’t credit your undergrad major which really gave you an edge on being able to tell a great story, if memory serves me right. Wasn’t it creative writing? You have a talent, that is for sure.

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Sara Kowalczyk August 16, 2016 at 2:38 pm

If anyone is looking for a great read quite pertinent to this topic and a really unique spin, I highly recommend Malcolm Gladwell’s “Outliers” — this post got me thinking about this amazing book about underdogs and outliers. It was really hard for me to put down, that is how much I liked it. And it gave me new perspective.

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N. Leptic September 17, 2016 at 2:32 am

Amazing story Julie — thanks for sharing. You are sharp, because I always notice you say “if you find naps helpful”. You’re right, “no two cases are the same”. 3.5g of Xyrem wouldn’t even knock me out. I don’t think all narcolepsy is the same.

Let me share my experience. Xyrem, well, it felt like I was overdosing on something while taking it. It didn’t produce natural slow wave sleep. I could tell because I woke up from a dream and said to the tech, what stage was I in? 3. Most dreams occur in REM. Tests were done on healthy subjects where one group napped on Xyrem in the afternoon, while another did not. Both groups slept at night without Xyrem. It would be expected that the Xyrem nappers would have less slow wave sleep at night because they showed additional slow wave during the nap than the non-Xyrem group (this is called homeostatic N3 drive/pressure), but they did not. Therefore, it was concluded that Xyrem didn’t produce restorative sleep, but was a smoke and mirrors trick, like the old Dexamyl (a sleeping pill around a stimulant core). Research done in the 70s shows that Xyrem is a stimulant crash in reverse, but that the drug has neurotoxic effects during the wear off phase. After that, there is an increase in serotonin and a few other neurotransmitters.

That is a very low dose of Adderall. You are indeed lucky! Most require higher doses which are cardiotoxic. Remember that XR is not extended release, but bi-phasic pulsed release. It is the same as taking two 7.5mg doses of Adderall IR spaced x hours apart. It’s simply a matter of when the 2nd phase pellets hit your small intestine and become unlocked. Usually a napping strategy with XR doesn’t work very well. Naps seem to have something to do with adenosine clearance — this is speculative on my part though (I have no proof). Coffee naps work on those — ie., take a coffee just before your nap. Unfortunately, naps don’t really refresh me for more than a hour.

Cataplexy is a strange creature. Its source is not the same in all patients. I was once considered a mild case, but unfortunately, I’m a rapid adapter. What’s interesting is the severest cataplectics are not the severest narcoleptics, which contradicts Stanford’s theory. If hypocretin is 0 in these cases, 15mg of Adderall would do nothing, because that isn’t even an effective dose for ADHD.

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Miranda September 25, 2016 at 8:52 pm

Your response gave me goosebumps.

Thank you for being brave enough to share your story with the world, for encouraging others to use their voice, and for using reflecting on the advantages you have and considering how you can impact the lives of people who don’t have the same advantages. That, to me, is a clear mark of authentic leadership tied to a bigger purpose.

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N. Leptic October 13, 2016 at 2:33 am

Hi Miranda, but that’s not it. There is something about Julie’s genetics that make her a good responder to Xyrem and Adderall. Adderall, at 15mg, isn’t even an effective ADHD dose for most children/teens, let alone narcolepsy 1 (which is a much more severe condition). She’s not able to do what she does because she’s Wonder Woman or the Bionic Woman with narcolepsy. Most people on Xyrem 9g and 60mg of Adderall were still 14-18 on ESS from the Orphan Medical clinical trials. The Xyrem drop out rate is close to 70% yearly. That means only 30% stay on it. 15% have a serious AE on it and stop. 16s on ESS (if you believe ESS) can’t really do what Julie does, no matter how hard they try. They would collapse from exhaustion and burn out in a short matter of time.

I remember Julie did scholarships for children and I cringed a bit. Why? Because all the kids could be trying equally hard, but the milder cases or the better drug responders get rewarded. That’s not fair. You reward children over their effort — the kid on Adderall is going to do much better than the kid of Ritalin. A fairer test would have been … take everyone off their meds and see how successful each is, but even that’s not enough. All narcoleptics are not the same, and the severity varies.

I’m sorry Julie, you meant well, but you’re inadvertently perpetuating the same stereotype that “if you only tried a little harder” to push through the sleepiness/fatigue/exhaustion … etc. Well, that little harder might come a lot easier to one person vs. another. It was for me in the early stages.

Take Mali Einen — she takes no stimulant. Julie does. So, is Mali more of a superstar because she does it without? Mali has worked in narcolepsy research for 16 years at Stanford. Maybe she’s getting an extra response from Xyrem that Julie doesn’t get that allows her to do that. See what I mean?

This really has nothing to do with “ivy league” advantages in life. It’s a medical condition. Some people survive breast cancer and some don’t even when the stage is the same and the tumor type and size is the same and there is no spread. It depends on how they respond and tolerate the treatment. If I were functioning better, I would be challenging the status quo with respect to the current treatments available, because they don’t cut it for the majority over time, and the majority are made to feel like failures because “they don’t have the energy to do what Julie does”. The truth is the industry doesn’t care — it’s all driven by money.

Sorry if I seem annoyed, but I’ve had people comment, “she doesn’t look disabled”. You have nothing! How can I get them to take me seriously? Michael J. Fox once got on stage with no meds to show people what Parkinson’s Disease was like. That’s what’s needed to get the point across. We don’t need awareness. We need better treatments. Go look a Dee Daud — he has all the same drugs available to him, yet he’s housebound.

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Merideth November 28, 2016 at 12:45 pm

I normally don’t comment on blog posts, but I couldn’t let this one go by me without speaking up.
N. Leptic, what is your point/purpose here? What is your ultimate goal in writing these contentious comments on the blog of a narcolepsy advocate? I believe that Ms. Flygare’s intentions are pure and good: to educate the world about our condition, give a voice and a presence to those struggling with narcolepsy, advocate for the rights of PWN, and unify us as a community of people who share a common challenge: Narcolepsy.
So, N. Leptic, what is YOUR purpose in your commentary here? Is it to poke holes in someone’s story? Provide data to dispute someone’s assertions? To point out someone else’s inaccuracies, faults, or flaws? To dis-unify/tear apart the narcoleptic community? To make someone else look bad? To make yourself look good? To feel better about yourself by trying to prove someone else wrong? If so, WHY?
You may want to explore these questions for yourself, to decipher your own motivations. And you may want to find a qualified therapist, psychologist, spiritual advisor, or coach to help you through the obvious struggle you are having, and that you are so blatantly displaying here.
I see your comments here as a desperate plea for help, by someone who is in a lot of pain, as a result of the inherent struggle that comes from living with narcolepsy. But please know that, prior to reaching this more “high road” conclusion, my initial (less enlightened) assessment of your commentary was this:
“Wow, this is someone with some MAJOR psychological issues, to be posting such negative comments on the blog/website of someone who volunteers her own precious and valuable time and energy to HELP those with our condition. That’s pretty friggin twisted. Is this person jealous or something? What are they trying to do here? Man, that’s messed UP!”
Your comments come across as contentious, malicious, mean, rude, and, quite frankly, just plain JERKY.
If you feel the need to make negative comments, do it somewhere else, please. And I implore you to get yourself some professional help in order to more appropriately deal with your frustrations regarding your condition.
Ms. Flygare, I commend you for the grace and tact with which you responded to this individual, despite their glaring negativity and total lack of ability to “play nice in the sandbox.” You could have easily chosen to delete this person’s inappropriate and hurtful comments to safe face on a public forum, but you didn’t. You left them for all to see. Please know that N. Leptic’s comments speak to the quality of N/ Leptic’s character, and your comments and actions speak to the quality of yours (in the best way). I am thoroughly impressed by the high-road and mature way you have chosen to conduct yourself here. Kudos to you, and MAJOR props to you, sista!
For all of us who live with narcolepsy, I wish us less struggle, more compassion, more understanding, more unity, more ease, more grace, and more love.
With gratitude,
~Merideth~

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SleepingBeauty December 21, 2016 at 6:55 am

The wording of N.Leptic’s post sound suspiciously like someone who used to post on the Narcolepsy Network message boards named Idiopathic Hypersonic. I strongly suspect they are the same individual, as he has made almost identical statements about Julie being an “outlier” as well as other negative comments about her and Mali Eineen. He had to be reported numerous times to the moderators because of how he treated other users, so thankfully he no longer posts there hardly at all. In one instance a mother was looking for information on how to find a doctor for her narcoleptic son and he responded “They are all useless, darling.” Ugh. So yes, he is a very angry and bitter person who harbors much jealousy toward narcoleptics who fall on the higher-functioning end of the spectrum, even in some cases going as far as to question the validity of their narcolepsy diagnosis.

Let’s stand up to bullies!!!

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Candace November 29, 2016 at 4:31 am

I read your book but it wasn’t for me it was for my son. He was diagnosed at age 9. I hear what N. Leptic is trying to say. I hear the frustration. He/She states”I’m sorry Julie, you meant well, but you’re inadvertently perpetuating the same stereotype that “if you only tried a little harder” to push through the sleepiness/fatigue/exhaustion … etc.” I hear this so much for my son. “Well if you put him on the proper diet or to bed earlier…a social worker told me “maybe if you reward him with treats he would stay awake in class.” It gets frustrating to hear. He has been on xyrem since age 9 and off stimulants since age 10. They made him shake and unable to draw. They made him think he had bugs crawling under his skin. They made him want to try and jump out of a moving car and out of a window because he couldn’t take it anymore. You do post the positive which is awesome. But my son suffers completely from narcolepsy. I Seen a video of a dancer who said she had a cataplexy attack. She fell gracefully to the floor and sat bewildered and cutely shook her head. Well cataplexy isn’t like that for my son. He falls hard and his tongue protrudes and he slurs his words. His legs buckle and we have had to put him in a wheel chair at the mall while everyone stared and thought he was having a seizure. Nightly he says demons are raping him. We don’t have the functioning narcolepsy. We have the debilitating life stealing kind. Nothing he can do…naps to refresh….medications have helped. I hear N. Leptics frustration. You are very lucky that your narcolepsy is in control. This isn’t a competition on who is worse or better at this condition. There are people out there who cant share their story because they cant even stay alert or tell their dreams from reality…..

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ND April 6, 2017 at 12:28 pm

So I don’t normally post in the comment section but I felt like I needed to add something here (like there isn’t enough opinions to go around right? ;D ).
My experiences are from being, not a patient, but working closely with patients in a ongoing study on narcolepsy. I write ongoing because even if we have collected all the data, we have yet to analyze all results. Anyways, my experience with these patients, all under the age of 18, was that they varied wildly in symptom and ability to manage symptoms. Some were barely on meds, and barely affected by the disease, while others were taking several and still not able to function. This is actually not so strange when looking at other neurological diseases, which show the same patterns among patients and is likely because there is variation between everyone, even among healthy people and this is natural. I sense a lot of frustration from N.Leptics, and I hear you. Not responding well to meds is disheartening enough without feeling like you are being judged by others who are “Managing” their disease or who you feel are comparing you to those who are. I think part of the problem here is that you are perceiving a judgement that may not (at least not entirely and certainly not from the author of this blogpost) be there. That doesn’t mean that there isn’t anyone judging narcoleptics or trying to put the blame of not being able to manage on the patient. There is plenty of that, hearing from the patients I met has given me a sense of how unfair it can also be in terms of social support. Some students had support of family, friends and school while others were being bullied or had teachers that wouldn’t believe their diagnosis. Stuff like that matters and raising awareness about the disease also helps all of you, being informed of your disease make people less likely to judge. But also if the general public are aware and informed they are more likely to advocate for it, donate money and government is more likely to spend money on research to find a cure. Instead of leaving the research up to pharmaceutical companies.

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