Learning how to manage narcolepsy

It takes time, and some experimentation to determine what works best to manage narcolepsy.

Often the first few years after being diagnosed with narcolepsy can be tough. Getting the medications right and understanding what works best for you can take trial and error. Working out the best schedule and strategies for managing symptoms also takes time. Julie Flygare (narcolepsy advocate and writer) and Dr David Cunnington (sleep physician) discuss what Julie has learnt over the 7 years since her diagnosis with narcolepsy that help her to better manage her symptoms.

Audio Timeline:

• 00:00 – 04:00 What are some things you’ve learnt about managing your narcolepsy?
• 04:00 – 05:47 Succeeding with narcolepsy

Julie Flygare

Julie Flygare, JD is the founder of Project Sleep, a leading narcolepsy spokesperson, published author, blogger and runner diagnosed with narcolepsy and cataplexy in 2007.  In December 2012, Julie published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” She currently lives in Los Angeles and serves on NIH’s Sleep Disorder Research Advisory Board.  Recently, Julie created the Narcolepsy: Not Alone international awareness campaign to prove that narcolepsy is REAL and that we are NOT ALONE, with over 1,000 photos from all 50 US States and 35 countries around the world.

Related posts and links:

• What is narcolepsy?
• Wake promoting medication for narcolepsy 
• Julie Flygare’s ‘Rem runner’ blog on narcolepsy
• Narcolepsy Support Australia
• Stanford Center for Narcolepsy

Transcript:

David Cunnington: So Julie, you’ve had a diagnosis of narcolepsy for some time now and sort of gotten used to it, functioning better than you used to. What have you learned over the years that has enabled you to function better and feel like you can manage symptoms better?

Julie Flygare: I’ve been diagnosed now for seven and a half years and I still feel like every day I’m getting better. It’s important to know that the first couple of years might be rough. I was in law school. I was pursuing a profession as a lawyer and it was really hard to incorporate narcolepsy into my life. I didn’t want it to be part of my life.

So I went through a big phase of denial and thinking I don’t need any accommodations. I don’t need any – I will take the medication and thinking I was just going to get better and go back to my life as planned. When that didn’t happen, I was really angry and I think that is a natural part of the process and something people just have to go through and for me, that – the first couple of years, I was just so bitter when I saw misperceptions on TV of narcolepsy and felt so alone. My friends and my family didn’t understand.

So something that has been really important for me is to find support, other with narcolepsy and to be able to share your experience because even though some friends you can help them get it to some extent, there is nothing like talking to another person with narcolepsy and saying, “Oh my god, the exact same thing happens to me.”

And also finding that other people with narcolepsy are awesome. They’re not weird or different. They’re just like you and they’re cool and doing inspiring things with their lives. So I would say support has been an essential piece of my life.

I also had a therapist for the first couple of years that helped me work through some of that anger, mostly just by listening to me. Every week, I would be upset about someone’s perception of my narcolepsy. Maybe we didn’t talk about narcolepsy at all. But it was really nice to have her as a sounding board just to be able to kind of like complain about everything that was happening.

For me, prioritising napping has been huge and something that was really challenging for me. Even just seven and a half years in, I’m still finding, oh my gosh, that is so incredibly important for me to be able to take my naps so that I’m able to work fulltime and drive to and from work. So that has been really important. I guess also recognising my sleepiness, really subtle parts of it.

So for me, now I know that I start to feel achy in my shoulders and my neck and I just feel kind of this discomfort. That is actually my first sign of sleepiness and that’s way before – it gives me about 15 minutes before I’m actually feeling like my eyelids are getting droopy and then I’m having a hard time remembering things. So really coming to terms with the subtle aspects of my symptoms has been helpful and tweaking my medications.

I think sometimes you think well, either this medication works or not or this medication makes me feel lousy. So I’m just going to stop taking it altogether. But I found that so much can be done in tweaking the amounts you take and the timing and what kind of foods I eat. So I try to eat dry, to eat a low-carb diet and high protein. There’s just so much in the details of a person’s schedule that has made such a difference for me, that I just had no idea about when I first diagnosed.

David Cunnington: You’re certainly an inspiration for a lot of people that I see and often I’m seeing them in that stage where they’ve just had the diagnosis and really asking me, “Am I going to be out of work fulltime? Am I going to be able to do these things?” So seeing someone like yourself who is able to do that is very important.

I think I really like that message about it is a learning process and it does take a bit of time.

Julie Flygare: Yeah.

David Cunnington: Because that would be what I would say as well.

Julie Flygare: Right.

David Cunnington: But the reassuring thing is to say, “Well, some people come through that, learn a lot actually and manage their symptoms a lot better.”

Julie Flygare: Right. You don’t always hear about those people. There are a lot of people out there succeeding with narcolepsy. We’re not usually on Facebook, not on Twitter and talking about it. But I do think a lot of people are doing really well with time. But to give yourself the space to be upset and to not do everything perfectly.

I didn’t exercise for the first two years after I was diagnosed. I just didn’t have the time and energy. All the medications and just trying to get through school and letting that go and being OK with it. It just wasn’t a huge priority at that point for me.

And just taking on what you can every day and not every day feels like a success for me.

A lot of times I feel like I’m always trying to do too much in one day and setting these huge goals and never quite making everything, checking every box off my to-do list, and that’s OK too. I just try to prioritise the most important things first. But you just keep going every single day and not every day is going to be some huge success story.

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