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Finding the Right Doctor (Part 2): Making the Switch

This article is the second of a series. Be sure to check out Part 1, Finding the Right Doctor: What Poor Care Looks Like.

By this point, I had been on dextroamphetamine for a few months. My headaches were getting worse, my irritability was sky high, and on top of all this, my sleep was the worst it had ever been.

Being a music teacher means there is lots of noise every hour of the school day. Even my students started to notice how I was changing. “Ms. Keith, why do you have headaches all the time?” became a very common question.

Sleeping more than before

My schedule was so out of whack. I began going to bed at 7 PM and waking up at 6 AM, needing at least 10 hours of sleep to function. I was napping during my lunch break, napping when I came home from school, and sleeping more hours during the night. My social life fizzled away to nothing.

Dismissed by my doctor

Every time I visited my doctor, I told him I really wanted to try something else. Once I even brought a Wakix pamphlet that was sitting in his office waiting room and asked if this was something I could switch to instead.

He took one look at it and said, “This is just here for show. It isn’t something that would help you.”

Another drug that did not help

I was stuck on this medication for 9 months. When I mentioned my lack of sleep, he prescribed me clonazepam, a medication used to treat seizures. Instead of sleeping at night, I was in a drugged state with my eyes closed. The sleep pressure on my brain was growing, and my ability to function during the day was dwindling away.

Reaching my breaking point

The online narcolepsy support group I was in became such a beacon of light during that time. These friends helped me realize that I needed to do something. None of them had ever heard of taking clonazepam to help a person with narcolepsy sleep at night. They all agreed that it was time for me to find a new doctor.

Finally, when I had enough, I drove to the doctor and let him have it. I cried, cussed, and firmly stated that I would no longer take this medication. It took 9 months and a temper tantrum to get my doctor to listen to me. He prescribed me modafinil and eszopiclone.

Finally switching to a new doctor

After that last visit, I found a new doctor who took the time to sit and listen to all of the concerns I had. On that first visit I had with my new doctor, he prescribed me Xyrem. Since then, I have switched to Xywav while continuing to use modafinil.

This doctor listens to all of my thoughts and quickly responds to any questions I have. The doctor’s office even did all of the heavy lifting when it came to dealing with insurance issues.

Find a doctor who truly listens to you

I cannot emphasize enough the importance of finding a good doctor — one who truly listens to you and takes your questions and concerns seriously.

You know yourself better than anyone, even a medical professional. You can’t be afraid to stand up for yourself and push for what you need.

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