Following Your Gut

For a while, I was going back and forth thinking to myself, Are these really my only options to manage my narcolepsy?

Since I was diagnosed in June 2019, I was on the same medication as was when I first started taking medication for my narcolepsy. I was on different doses of these medications throughout this past year and a half but never tried anything new.

The last time I was at my neurologist, I mentioned that my narcolepsy symptoms were getting worse, and I asked if I could try any other medication.

I felt frustrated by my doctor's response

My doctor told me that she thinks I am depressed and I should contact my psychiatrist and get on medication for that. She said, "If you can get that under control, I think you will start to feel better."

Being very frustrated with that, I told her I would talk to my psychiatrist and go from there.

I messaged my psychiatrist right away and told her what my doctor had said. My psychiatrist said she did not agree and that everyone is stressed and overwhelmed right now. I have noticed that high levels of stress can make my symptoms worse and can mimic depression symptoms.

Where I live, right before I saw my neurologist, we had a derecho on top of the pandemic. So yes, every single person was stressed and overwhelmed!

It is okay to get a second opinion

A month after I saw my neurologist, I had a physical with my family doctor and told her that I just don’t think I am getting the right management for my narcolepsy. I asked her if there was anything else I could do.

She told me that she could refer me to a new neurologist and see if another doctor had other options for me. I decided I would try to get a second opinion and see what happened. I got an appointment scheduled a month later.

I was really looking forward to seeing this doctor, as it is at the University hospital here where I live.

My new doctor was completely different

I went to see my new doctor 2 weeks ago. This doctor actually listened to me and talked to me about a couple of options I have. He switched the dose of a couple of medications and told me I should try and schedule a nap daily.

I was shocked when he had said this because I never thought I would hear a doctor tell me to take a nap daily. This doctor also told me he thinks I have narcolepsy type 2 overlapped with idiopathic hypersomnia (IH), which in the future may be called narcolepsy spectrum disorder. I thought that was really cool!

Exploring new treatment options

I have been trying this for 2 weeks now, and I just do not see any changes. I called him the other day to see if there was anything else I could try. He said that he was going to try and get me on Wakix and Xywav.

I am excited to try those, but I just hope it does not take too long to get my insurance to approve it.

Opportunities for research studies and a support group

When he called me, he also asked me if I would be interested in a few research studies he was in the process of getting approved. I was so excited when he asked me that. I told him I would absolutely be interested.

He also asked me if I would be interested in him setting up a support group for myself and some other patients around my age he sees who have narcolepsy or IH. I do not know many doctors that would do these types of things.

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