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Doctors With Narcolepsy??


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#21 purpley

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Posted 25 August 2014 - 06:37 PM

This is off topic.  However, I have a question that I want to present to a smaller group before I present to a larger group.  Did any of you have a period of time greater than one week in which you could not sleep prior to you diagnosis ( this could predate your diagnosis by years)? 

 

Nope.  I'm not even sure I've ever had a single night where I couldn't sleep, let alone a week.



#22 Lorax64

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Posted 25 August 2014 - 07:11 PM

This is off topic.  However, I have a question that I want to present to a smaller group before I present to a larger group.  Did any of you have a period of time greater than one week in which you could not sleep prior to you diagnosis ( this could predate your diagnosis by years)? 

 

My son has never had a problem sleeping - just the opposite - once the symptoms started he wanted to sleep 75% of the day if he could. I've heard that PWN can have insomnia. He doesn't have the classic symptoms, so maybe that is why? He has horrid EDS when not treated, but no cataplexy, HH, etc. and he isn't even positive for the genes. His problems started after a concussion. 



#23 Hank

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Posted 25 August 2014 - 07:58 PM

My inability to maintain sleep is my chief complaint with Narcolepsy. I have cataplexy, which has its own challenges. But sleep- without Trazadone for me- is like trying to sleep on a school bus. Misery.

 

Sometimes it is worse, sometimes it is less worse, and sometimes it is excruciating. To be so desperately exhausted and unable to stay asleep is aweful.

 

This is part of N for some. If you are among the chosen few, I am so sorry. Medication has been a Godsend for this. Just please avoid anything that creates a dependency.



#24 Ferret

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Posted 25 August 2014 - 09:59 PM

I have never had a problem with insomnia ever...in my whole life. If I sit still for five minutes, I'm asleep...and I'm usually asleep as soon as my head hits the pillow whether it's for my nap or my nighttime sleep. I also have N with C.

I know people who have insomnia and I am grateful that I don't have it.



#25 ErDoc

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Posted 25 August 2014 - 10:14 PM

My reason for asking if anyone experienced a period when they could not sleep is because with my sleep apnea, even after starting treatment it was easy for me to fall asleep after a twelve hour day.  However, I had a period in which I could not sleep for a few weeks.  It was a time of turmoil for me and I attributed it to that despite having never have what I consider the most severe episode of insomnia that one could ever have.  Today while reading through another tread someone else mentioned experiencing such an episode years before being diagnosed as well.  It their is a subset of individuals with narcolepsy who have such an experience, and believe me if you had this experience you would never forget it, it might indicate a period of destruction of hypocretin producing cell with the unregulated release of hypocretin and prolonged period of alertness. 



#26 rayraybaybay

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Posted 26 August 2014 - 10:09 AM

My reason for asking if anyone experienced a period when they could not sleep is because with my sleep apnea, even after starting treatment it was easy for me to fall asleep after a twelve hour day.  However, I had a period in which I could not sleep for a few weeks.  It was a time of turmoil for me and I attributed it to that despite having never have what I consider the most severe episode of insomnia that one could ever have.  Today while reading through another tread someone else mentioned experiencing such an episode years before being diagnosed as well.  It their is a subset of individuals with narcolepsy who have such an experience, and believe me if you had this experience you would never forget it, it might indicate a period of destruction of hypocretin producing cell with the unregulated release of hypocretin and prolonged period of alertness. 

 

 

Over the past 3 weeks, I've experienced 4 or 5 nights where I got literally zero hours of sleep (including last night). It's bizarre, as I've never experienced it before. Normally I'm what you'd consider the "long-sleep"-type narcoleptic, though I do have very significant sleep fragmentation, like Hank.

 

Taking Adderall today was like putting a Band-aid on a bullet-wound. I'm not looking forward to this evening, to say the least... though I am looking forward to bedtime. Hopefully I'll sleep!  :(