How to manage
I was diagnosed at 65 years of age. The symptoms have worsened not at 70. I find it strand when Dr. Google says the disease is not progressive. Sometimes I worry because I live alone for the most part. I have sought natural was to deal with the disease that may help brain fog for short times. But since I have been diagnosed I cannot seem to obtain the medications needed. Doctor recommends Wakix, but my insurance for some reason will not provide needed meds stating they are in back order. Does anyone have the same issues? I teach train and coach tennis athletes but don’t know his much longer and my income is limited. Thank you for the form. Q: Is there hope that narcolepsy will stop getting worse or are my hopes in vain ? 🤔
Hi
. Welcome to the community! A new diagnosis can be overwhelming and even more so when you can't access the medications that you need. Wakix can be hard to get at times, but you might find it by trying other pharmacies. My son often has to do that for his ADHD meds. He alternates between two pharmacies whenever there is a shortage and is usually able to get his meds with no more than a week or two lapse. Here is an article that lists medications for narcolepsy: https://narcolepsy.sleep-disorders.net/medications. If your insurance company refuses to cover Wakix, maybe you can use this article to start a conversation abour trying something else.
Narcolepsy can be somewhat unpredictable. For many people, symptoms ease with age, but that is not always true. My grandmother developed narcolepsy in her 60s and it never worsened. I hope that is the case for you. I wish I had better answers. The uncertainty is often the hardest thing to deal with.
Here is an article about some lifestyle changes that might help while you wait for medication: https://narcolepsy.sleep-disorders.net/lifestyle-changes. I hope you find enough ways to cope that you don't have to give up your career.
Please know we are here for you whenever you need support or a place to vent. You have a whole community here of people who get it. Best wishes. - Lori (Team Member)
