Finding the Right Narcolepsy Treatment Plan Is Like Building a House

By Tatiana Corbitt

2 min read

Finding the right narcolepsy treatment plan is like building a house.

When I was first diagnosed with narcolepsy, I hoped there would be a quick fix — a pill I could take to make it all go away.

However, finding the right narcolepsy treatment plan turned out to be more involved and fluid than I’d previously thought. My severe narcolepsy symptoms were able to be decreased, but not eliminated, from my life. It took a lot of work to find the right medications and dosages.

With my doctor, I was able to build a narcolepsy treatment plan, similar to building a house. Each piece is important, and no one portion is complete without the other.

The foundation of the house: medication

At the foundation of our home is often prescription medication.

It took me years to find the right treatment plan. The first drug I tried was a medication to get me into a deep sleep — that resulted in a plethora of side effects without much improvement in my narcolepsy symptoms. It even resulted in a permanent side effect for me — a drop in hearing accompanied by constant tinnitus. I was not informed by my doctor that this particular drug was ototoxic, meaning it causes hearing or balance problems at high doses.

It is important when trying different medications to listen to your body – if something does not feel right, listen to that feeling!

Prescription medications are important for treating narcolepsy because of the ways in which narcolepsy affects health and overall lifestyle. However, while the foundation of the house is the most important – it is not the only important part of the house.

The walls: lifestyle changes

The walls of our home are built brick-by-brick by lifestyle changes.

In addition to medication, there are also some lifestyle changes that can help improve the symptoms. For me, this includes multiple scheduled naps throughout the day that have been literally prescribed to me by my sleep doctor.

This also includes limiting caffeine to certain hours of the day and not drinking alcohol at all or too late in the day. These both can interfere with my sleep and make me more fatigued the next day.

It is also important for me to listen to my body so I don’t do too much and end up with a flare of narcolepsy symptoms. Without these lifestyle habits as walls for my house, I cannot uphold the roof – which brings me to the last portion of our narcolepsy treatment plan.

The roof: community and social support

The roof of our home is community and interpersonal connection.

When it comes to a medical treatment plan, it may sound silly to add community and interpersonal connection as an important part. However, I’ve found that while community cannot "fix" my narcolepsy, it can make life with narcolepsy a bit easier.

My narcolepsy community supports me when I am feeling down. They help remind me how far I’ve come in my narcolepsy journey. Helping to support them during their difficult times also gives me purpose. And when we talk about living with narcolepsy and all that entails, I feel validated in my experiences.

Using Tatiana's metaphor, how do you "build the house" of your narcolepsy treatment plan? Share with us in the comments below.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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JIWA Member
HI Lori. I have shared my thoughts a few times over the past couple of years. I can review them here again, for those who missed them. 1) be kind to yourself, do not expect to get everything done in the time planned, and priorities change. If something comes up that needs to be done, forgot something else, and don't worry about it or berate yourself. 2) Figure out your 24 hour sleep schedule. Many of us do not sleep on the same business schedule that is good for office work in this country! My best sleep time in 24 hours is between 2:30 pm and 8 pm. So I no longer schedule anything but sleep during that time, and I turn off my phone! Of course, that doesn't always work, but I try and keep to that schedule. I have a nice comfy bed and quiet environment. And the family knows this..So do most of my "friends" by this time. Earplugs are GREAT! I will read and rest at night, but if I sleep, that is great, if I do not (and often I don't--as I also have frequency and incontinence and cannot take anything for it) 3) I was able to remove myself from toxic people and environments--I moved 1800 miles away. Not everyone can do that, but whatever you can to reduce stress from others. 4) again, be kind to yourself. 
1. Lori.Foster Community Admin
 Those are some fantastic strategies, <inline-mention username="JIWA" user-id="4602372"/>. I especially love that you sleep according to your biological clock rather than a cultural clock. How awesome that you also surround yourself with family and friends who are supportive. While others might not be able to do all of these things, they might find ways to incorporate some of them. I am glad you are part of this community. Warmly, Lori (Team Member)
JIWA Member
Thank you for sharing your insights and experiences. I mostly agree with the above article. I found for me that lifestyle modifications and addressing community were the most important tools for managing my narcolepsy. I cannot take any of the medications that are on offer. I have multiple chronic conditions, and I never think that prescription medications should be the foundation for health care management, unless there are no other options, and the treatment is not worse than the disease. 
1. Lori.Foster Community Admin
 Hi <inline-mention username="JIWA" user-id="4602372"/>. I am glad you have found ways to cope without medications. You are not alone. There are several others in this community who are unable to take medications. Are there any specific ways of coping that you have found helpful and might want to share? Thanks for joining in. Best wishes. - Lori (Team Member)