Finding the Right Narcolepsy Treatment Plan Is Like Building a House
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.
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