3 replies to this topic

[Dale]

I would like to know if anyone else has this same diagnosis as me. I have narcolepsy with sleep deprivation, apparently very rare to have both at the same time. My sleep test found I wake up 260 times a night and I never got into REM sleep in the 8 hours. I also fell asleep every time during the day within 3 minutes. They say my day time tiredness equals the same as someone who has been awake for 36 hours. The narcolepsy and sleep deprivation are not the cause of each other, that has been confirmed.

[Hank]

I would like to know if anyone else has this same diagnosis as me. I have narcolepsy with sleep deprivation, apparently very rare to have both at the same time. My sleep test found I wake up 260 times a night and I never got into REM sleep in the 8 hours. I also fell asleep every time during the day within 3 minutes. They say my day time tiredness equals the same as someone who has been awake for 36 hours. The narcolepsy and sleep deprivation are not the cause of each other, that has been confirmed.

Narcolepsy is a chronic neurological condition. One of the features of sleep for those of us with Narcolepsy is fragmented night time sleep- microfragmentation. I never knew I woke up 163 times per hour before my MSLT. It was not perceptable to me. So, fragment sleep is part of having Narcolepsy- we lack the ability to have a good night's sleep.

What are the qualifications of the person who is telling you that narcolepsy and sleep deprivation are two seperate things. Most of the symptoms of Narcolepsy are also the symptoms of sleep deprivation, because people with Narcolepsy are incapable of ever getting adequate sleep because of narcolepsy. This sounds a bit "amateur" if this is what you are being told. I would suggest asking for more clarification. How many patients has your physician diagnosed and treated for Narcolepsy and what is his/her qualifications? Maybe they were trying to simplify the diagnosis and made it sound confusing- I don't assume to know.

Essentially, it is like saying: You have Narcolepsy. Not only do you have Narcolepsy, but you also have the symptoms of Narcolepsy (fragmented sleep and sleep deprivation). That is very rare (to have an illness and the effects of that illness?). Either this information has not been communicated to you clearly, or the people telling you are not very familiar with Narcolepsy. Maybe a little of both.

[Dale]

This was diagnosed by the top Sleep doctor in Canada as well as a neurologist. The different medication they gave me indicated this. When I was first diagnosed they said what you are saying, they were related. They had me on medication to sedate me for 2 weeks at night to "force REM sleep" hoping that I would be awake during the day, which it didn't work, I still fell asleep at bad times. So the then gave me drugs to keep me awake and make me overactive during the day hoping I would sleep at night without the sedating drugs. This also didn't work, so they figure they "aren't" totally related even though like you say they go hand in hand. They are confused as much as I am, they even confrence call with other sleep doctors to see if they have come across the same symptoms.

For myself I don't really care as long as they can do something. I am on 90mg of Adderall as well as 10mg of Dexedrine in the morning to wake me up. I still fall asleep during the day. I am getting tired of being tired.

I do appreciate your reply, anything helps

[Maximilian]

What's the update on this - very interesting topic.