Welcome to Narcolepsy.Sleep-Disorders.net Stories

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At Narcolepsy.Sleep-Disorders.net, we believe that we are stronger together than we are alone. Living with narcolepsy can be a challenge, but the more we share and support one another, the better off we will be. Whether it is your own story of how you manage narcolepsy and its complications or tips on daily living, we want to hear from you!

So please submit your own personal story about narcolepsy, and check back often to read about the stories others in the community share. We hope these stories become a source of inspiration and support for our community.

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CommunityMember248b80 Member
A challenge is an understatement. I have both severe sleep apnea and acute narcolepsy. I'm a stroke survivor and i am currently fighting with doctors that want to blame my cpap for my daytime sleepiness when i know its not. My cpap only helps me sleep at night and does nothing about my traumatic brain injury, the way i hide things from myself, my forgetfulness, the vivid dreams i have and the brain fog. Those are just some of what bothers me all the time. I am so tired today i am literally sick from it. I cant get out of bed more than it takes to use the bathroom. After i had my stroke i layed paralyzed on the ground for 3 hours before i was found. I slept for 3 days straight in the hospital where they got to see me having conversations in my sleep and i slept through an angioplasty where they tried to wake me up and couldnt. I get so sick i want it to end. I have at one time went out into the desert and in 110° heat in Phoenix i walked for 4 miles at noon just to see if i could do it or to die trying. I hate not being able to live a life anymore. What medications are there for this. I asked my pcp about medication and she said there is no medication for fatigue then when we got up to leave she said there are medications for people with narcolepsy and i turned to her and said that i have acute narcolepsy. She was trying to trear me without even knowing what i had. 
1. Lori.Foster Community Admin
 How maddening that your doctor would say that, <inline-mention username="CommunityMember248b80" user-id="9802767"/>. They are medications for both narcolepsy and excessive daytime sleepiness. Here is an article about treatments that might interest you: <a href='https://narcolepsy.sleep-disorders.net/treatments' target='_blank'>https://narcolepsy.sleep-disorders.net/treatments</a>. Who do you see for your narcolepsy? If you do not already see a neurologist who specializes in sleep disorders, you might consider finding one. Sorting your narcolepsy symptoms from your TBI symptoms can be difficult and requires someone wih lots of experience in the sleep field. As for your sleep apnea, if you are using your machine regularly and successful, it would be hard to argue that your sleepiness is caused by your apnea. Your recordings should show whether you are waking repeatedly thoughout the night or not sleeping long enough. If your doctor truly believes it is not caused by narcolepsy, then maybe your doctor should be investigating other factors, like nutritional deficiencies or thyroid issues. Unfortunately, health conditions like this are often misunderstood, even by professionals. Though it can be exhausting, self-advocay is essential. I hope you keep pushing for more answers and better treatment. Best wishes. - Lori (Team Member)