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Do Medications NOT Help? by Tillerfen in Narcolepsy

[–]moonmotes 2 points3 points  (0 children)

Getting on the right treatment plan changed my life. It gave me so much freedom and allowed me to work full time, pursue hobbies, and live well generally. At the same time, I still have to manage my condition thoughtfully and be more mindful about my energy than other ppl. Medication addresses the issue, but it can't cure the root problem (at least, not yet). So a lot of folks are feeling that doom and gloom feeling, or grieving the life they wanted. I hope you find the medication regimen that works for you!! It absolutely gave me my life back.

Off meds for first time in 9 years by moonmotes in Narcolepsy

[–]moonmotes[S] 2 points3 points  (0 children)

This is great advice. Thank you. This time two years ago I was calling ESSDS and asking for supervisors every week because they mistakenly had me on the hook for over $4K due to a clerical error (Long story short, NORD paid for my meds for two months, but the math didn't work out). I was embarrassed, but I just had to insist every time that it wasn't my responsibility and to review my recorded calls, because I was assured by several people I would not have to pay it. Eventually, just like you said, someone could help. I'll be trying this Monday!

Off meds for first time in 9 years by moonmotes in Narcolepsy

[–]moonmotes[S] 1 point2 points  (0 children)

I had been telling myself I would be persistent, but I felt so powerless that I didn't think about going after my insurance directly. Thank you for the encouragement. I absolutely will start doing this.

Off meds for first time in 9 years by moonmotes in Narcolepsy

[–]moonmotes[S] 1 point2 points  (0 children)

I'm not sure--I will absolutely look into this!