Long Road to Treatment

It can take months to years to get diagnosed with narcolepsy. For myself, once I got my narcolepsy diagnosis, I thought the road was over. 'If we know what is wrong with me, we can fix it!' I thought.

I was (mostly) wrong.

Getting a diagnosis and treatment plan can take years

Although narcolepsy can be treated to reduce symptoms, there is no known cure. That being said, knowing this, I still thought I could take 1 or 2 daily medications and go back to living my life as normal.

Unfortunately, this wasn’t the case. I learned through experience that the road to an effective narcolepsy treatment plan can take years. And there isn’t a quick fix.

Medication side effects were 'tolerable'... until they weren't

The first medication that I ever tried to treat my narcolepsy was Xyrem, or twice-nightly sodium oxybate. My sleep doctor at the time made it out to be the end-all-be-all for narcolepsy treatment.

I was determined to make it work. So determined, in fact, that I was encouraged to disregard side effects as "tolerable"... until they suddenly weren’t. I wish I had listened to my body and advocated for myself more strongly in this situation. As they say, hindsight is 20/20.

Finding the right medication(s) for you

Ultimately, everyone reacts to medications differently. Thus, some of us are going to experience side effects from narcolepsy medications. It’s about finding the right medication for you!

The journey to an adequate narcolepsy treatment plan might also include taking more than one medication. People with narcolepsy have trouble getting quality sleep, and they also struggle to stay awake. Thus, different classes of medications are utilized to reduce these symptoms.

Personally, I take different medications for my nighttime symptoms than the medications I take in the daytime. Nighttime medications help me sleep, while daytime medications help me stay awake.

Medication tolerance and cycling

Even after finding a narcolepsy treatment plan that works best, medications might become less effective over time. It is possible for the body to develop a tolerance to these medications, which means that it can take higher and higher dosages to treat the same symptoms adequately.

Some people find it helpful to switch medications for short periods of time. Other tools for combatting medication tolerance include taking medication breaks for a few weeks or months. This involves stopping the medication until the body loses the medication tolerance. (It is important to note that these are all methods to be employed under the guided supervision of a medical provider. You should never stop a treatment without speaking to your doctor about it first.)

What surprised you about your narcolepsy treatment journey?

Lifestyle changes are often needed in order to accommodate narcolepsy symptoms. These can include implementing daily scheduled naps, or working under a certain number of hours per week.

Even after all of these treatment options are employed, it is possible (and probable) to still experience a degree of narcolepsy symptoms. This is because narcolepsy is a permanent neurological condition, and while treatments are helpful, they are absolutely not a cure.

What was most surprising to you about your own narcolepsy treatment journey?