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Doctors disagree on diagnosis, medication anxiety

Last year I had a sleep study and sleep latency test done to investigate my excessive daytime sleepiness. The sleep study was normal, and the sleep latency test showed normal times for falling asleep but rapid entry into REM, excessive time spent in REM, and I fell asleep for every nap. The first doctor I saw said this indicated idiopathic hypersomnia and put me on modafinil. Modafinil is ok, but I can’t take it every day or I won’t sleep at all. But the second doctor I saw after my first closed his practice said my symptoms indicated narcolepsy and put me on lumryz (sodium oxybate), and I had my first dose last night. The process to get this medication and the repeated warnings about usage made me extremely anxious and I had a hard time relaxing last night. Additionally, I still experienced sleep paralysis on lumryz, which is one of the symptoms that I am trying to reduce. I think I am extremely sensitive to medication, whatever disorder I do have is mild, and I started doubting whether my symptoms warranted this medication. I want to have restful sleep and I want to lessen EDS, but I don’t want to over medicate… in general I’m feeling very conflicted about my diagnosis and medication. I don’t know anyone else who has struggled with this, I can’t find any reviews of lumryz that aren’t sponsored by lumryz itself, and would love some insight on use of any sodium oxybate medicine or even opinions of this conflicting diagnosis.

  1. Hello, so I was prescribed Lumryz and just received it 5 days ago.. I tried the first packets for 4 days & absolutely hated the side effects it put me through and the way it made me feel… last night I decided to try the next up packet and I felt the double vision come on but I got to sleep a lot faster than the first packets so did not go through the side effects I went through with the first packets! So dr is hoping this helps and me as well bc I slept all night! I would like to know your experience with lumryz?!

    1. Hi . This is a great question. If you would like more responses from community members, you might want to post it in the forum section. It will get more exposure there. Here is a link: I hope Lumryz continues to be effective for you. Best wishes. - Lori (Team Member)

    2. That must have been scary, . I hope a different dosage helps or that you find something else that is effective without such awful side effects. Thinking of you. - Lori (Team Member)

  2. Hi . I see you are new to the community. Welcome! Any health condition that involves the Central Nervous System can be difficult to diagnose and treat. For all we have learned about the brain and the nervous system in general, there is still so very much we don't know. So, I can see why you have gotten different diagnoses from different doctors and why you are confused and concerned about treatment. We are not medical experts, so keep that in mind when you get responses to this post. Ultimately, you need to do what helps you feel better and helps you live your life more fully. You will be the best judge of that. If a medication makes you feel worse than before, it might not be worth it. Do you have confidence in this doctor? If not, there is nothing wrong with getting another opinion. In fact, most insurance companies encourage it. Here is an article about sodium oxybate (the active ingredient in Lumryz) that might interest you: I have not found any opinions on it in our archives, so I hope others chime in here with their own experiences. I wish I could be more help. Thinking of you and wishing you the best. - Lori (Team Member)

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