What Advice Do You Have For Someone Newly Diagnosed With Narcolepsy?
Take the time to figure out what it means to you. You need what you need, if others think that you're just lazy or not trying hard enough then you have to find a better support system. Don't compare yourself to others, and don't be afraid of your experiences. Only people with narcolepsy understand what narcolepsy is like, don't let anyone tell you they know better than you about your experience.
Get your family to understand it is not laziness.
You’re already on the right path. Because my answer would be get involved and research research research. Narcolepsy patients will find that we understand and know more about our condition than some doctors. Don’t rely on information from your doctor only. Join organizations, join support groups, and research new clinical updates.
Also, narcolepsy is known for its comorbidity and parasonmia development such as memory loss, hypersomnia, nightmare disorder, impaired balance or mobility etc. If you notice any abnormal new develop symptoms contact your doctor immediately. There may be some thing that can help
And lastly I’d recommend you talk to your family and friends about your condition. So they are aware and can provide support when needed.
Lifestyle changes are imperative, along with nutrition and sleep hygiene. Be your own fiercest advocate. Stay in touch with your diagnosing Dr, and keep a sleep log. I know Samsung has a free sleep tracker app. Keep a running diary about what you eat, and if it makes you tired or not. There are some good worksheets out there to structure your notes. I personally avoid carbs until I am home from work. They make sleep attacks worse.
And never give up- we are all here going through it with you. Feel free to reach out to me if you need a listening ear!
Get your rest I found my self falling asleep at the wheel or talking with someone take naps.
I'm Newly Diagnosed With Narcolepsy.
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