Finding the Right Doctor (Part 1): What Poor Care Looks Like
I’m sure a lot of women will agree that we don’t always get fair treatment from doctors. Many times our concerns are brushed aside or flat out denied.
We are often told things like, “Are you on your period? Maybe that’s all it is,” or “I’m sure your pain isn’t as bad as you think it is.”
The doctor who diagnosed my narcolepsy
Unfortunately, the worst experience I had was with my first sleep specialist. This doctor was the one to diagnose me with narcolepsy after the sleep study. I had this doctor for about a year and a half. He never fully listened to my concerns and repeatedly gave me poor treatment.
My first prescribed stimulant
The first medication I tried was armodafinil. At first, I felt great. I had energy like I haven’t felt in years. Getting up in the morning didn’t seem as difficult, and I felt more alert even through the evening. Unfortunately, these effects didn’t last long.
After only a few months of taking this medication, my nighttime sleep got worse. I was having more hypnopompic hallucinations than before, and the lack of good sleep started to affect me during the day. I once told him, “I just feel so tired all the time.” To which he responded, “I can’t fix your tiredness, only your sleepiness.”
Trying a different narcolepsy drug
That is when he prescribed me dextroamphetamine. This medication is typically prescribed for people with attention deficit hyperactivity disorder (ADHD), though it can also be used to treat narcolepsy. The doctor started me on a low dosage and told me I could slowly titrate up over time, if necessary. Just like before, I felt great for a few weeks.
Experiencing side effects
However, this time the side effects really affected me. Aside from the more common side effects, like headaches and dizziness, I started to feel a little crazy. While on this medication, it was as if someone took all of my senses and turned them up to max. I became hyper-focused; one time, I spent 90 minutes cleaning my bathroom without realizing any time had passed. My brain felt like it was jumping from one thing to another at lightning speed.
Talking to my doctor about Xyrem
On the next visit, I explained my weird behaviors and asked if there were any other medications I could try. I mentioned that some friends of mine have been taking a newer medication called Xyrem, and some of them didn’t need stimulants while on Xyrem.
He laughed and said, “I don’t believe in a medication that you have to wake up in the middle of the night to take.”
I finally gave up. This isn’t worth arguing every time I see my doctor. Besides, he is the professional so he must know what he is talking about... Right? How does this story end? Check out Part 2, Finding the Right Doctor: Making the Switch!
Have you ever experienced issues with a healthcare provider? Join our forum discussion on finding a new doctor for better care.
What is the hardest part of coping with narcolepsy?