Should I get a second opinion? Doctor won’t order additional tests/is okay with combining prescriptions?
4-ish years ago, I got my sleep study and MSLT done. I was already prescribed Vyvanse for ADHD, but I didn’t want to increase my dose because I have an arrhythmia and tachycardia and my cardiologist was already a bit nervous about being on a stimulant in the first place. My sleep doctor told me he was unsure how to interpret my study, but based off the results, he knew I definitely had excessive daytime sleepiness. He said that since insurance was weird about retesting and since treatments for different sleep disorders were similar, he recommended increasing my Vyvanse dose. I told him my concerns about my heart, so he recommended Sunosi and sent me on my way.
In his defense, I just stopped following up with him because the Sunosi didn’t help and I tried to “tough it out” since I assumed from our conversation this was the best they could do.
Fast forward to now, the sleepiness got worse, increasing Vyvanse didn’t help, and my bloodwork for any other issues came back normal, so my PCP recommended I go back to my sleep doctor because she reviewed my MSLT and said that the suspected diagnosis on there was Narcolepsy or IH.
I went back to my him and sure as sh*t, he said yes, he thought I had IH or Narcolepsy but was unsure which (I have since confirmed this by requesting my medical records and reviewing the interpretation of the MSLT). I asked why he didn’t follow up for additional testing and just “diagnosed” the symptom of excessive daytime sleepiness, and he said that since I did shift work, he didn’t want a diagnosis to possibly impact my career. I asked him what he was leaning towards and he said IH since my 3+ hour naps aren’t refreshing. He said that additional drugs have been approved to treat IH since I last saw him, and that may help, so he prescribed me Modafinil. He said with my job and vivid dreaming/acting out dreams, he didn’t want to prescribe things like Xywav or Xyrem.
I will admit the Modafinil has helped, but my pharmacist told me it was unusual to be prescribed both vyvanse and modafinil and had gone back and forth with my doctor before filling it to make sure he was aware I was already on a stimulant (I take 40 mg of Vyvanse in the morning and 100 mg of Modafinil in the afternoon). I think there’s room for improvement (maybe increasing the Modafinil dose and decreasing the vyvanse, since Modafinil makes me feel rested and vyvanse makes me feel tired and wired), but at my checkup, the doctor said to just give it another 3 months and then we’ll see what to do next.
At this point, my therapist and family think this is odd and that I should get a second opinion. My boyfriend said he thinks I would have needed an IH/narcolepsy diagnosis in the first place for insurance to even approve covering Sunosi, so he finds it concerning my doctor never officially told me WHAT I had and just wrote the script and sent me on my way. However, having read some of the experiences of everyone else on here/narcolepsy page, I’m wondering if this is just “normal” for sleep doctors and I should just stick with him? What are your thoughts?