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Following Your Gut

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

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.

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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The 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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