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Struggling With What I Believe May Be The Big N

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#21 DeathRabbit



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Posted 24 January 2013 - 10:18 AM

- Awwee dormir!! I feel your pain!! Sounds like we both had it rough during the MSLT. I'm glad to know I wasint the only one. What frustrates me is when I talked to a co-worker of mine and told her how mad I was at myself, as I felt like my anxiety prevented me from getting the answers I needed, she replied "well they would take that in to account. But people with Narcolepsy would be able to fall asleep even if a bomb was going off!!!". Where are you at these days with your diagnosis??


- sk8plexy, that's crazy that even with your 2 SOREMs they still didn't give you a definite diagnosis!!!

That part about being able to sleep thorugh a bumb is bullcrap. Narcoleptics tend to be the exact opposite, seeing as we don't actually sleep that deeply, hence the problem.

#22 MINItron



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Posted 24 January 2013 - 11:05 PM

That part about being able to sleep thorugh a bumb is bullcrap. Narcoleptics tend to be the exact opposite, seeing as we don't actually sleep that deeply, hence the problem.


I agree. I may be able to fall asleep anytime, anywhere, but I will also wake up at the least provocation as well. 

#23 munky



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Posted 25 January 2013 - 02:38 AM

Exactly. That's the kind of thing that people who don't really understand what Narcolepsy is will say.

#24 dormir



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Posted 27 January 2013 - 09:11 PM



I don't have insurance so I am at the mercy of my regular clinic and the county hospital that takes uninsured patients.  It takes forever to get anywhere.


I see my regular doctor in a couple of weeks and I want to bring in a list of things to ask her about (also not including the sleep study), but the sleep study is at the top.  I still don't know my PSG results and I don't know if the hospital faxed them to my doctor or not.  I'm going to guess no.  


I'm considering asking her if she thinks it's worth getting a referral to a neurologist and possibly getting a psych evaluation to rule out things like schizophrenia (often have nightmare disorders) or something.  I really don't know where to go from here so I very much grasping at straws.  


With all that said, what your friend said about narcoleptics (they fall asleep no matter what!) is what my sleep doctor said and now I'm quickly losing hope. He mentioned he wants me to try an actigraphy watch, but by  next appointment with him isn't until April.



When is your next appointment to talk about the sleep study result?  I'm so sorry!  How saddening and frustrating.  I'm really hoping your doctor will want to treat based on symptoms and not just give up on narcolepsy.

#25 MeanJeanSoSleepy



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Posted 27 January 2013 - 09:19 PM

I am so in agreement with all of you!! One thing I have learned through all of this, is how many misconceptions regarding Narcolepsy there are. People are so stubborn and quick to make statements that are not even true. 


Dormir... I feel so much for you, because we went through the exact same thing with our MSLT. For me, not only did I have all those wires hooked up to me, but the room was freezing cold, housekeeping was banging stuff all day, the sound of ambulances was happening every five minutes or so, and my anxiety was through the roof. Normally my pulse is around 56bpm, and during my sleep study it was around 90-100bpm. With all that being said, how is anyone, even those with Narcolepsy supposed to fall asleep?


Now put me in a bar, restaurant, friends house, or movie theatre, and I'm out cold in less than three minutes. That's where they should have done my MSLT ;) 


I think you should exist every option and opinion out there. I would start with the Neurologist first. I hope for your sake you are able to get some answers and a resolution to your problems. I think the scariest thing about this all, is not being able to get an answer and having to live the rest of our lives like this. 


My Doctor that referred me for the sleep study, is also the Doctor I work for. He knows something is up, because he see's how phyiscally exauhsted I am on an everyday basis. Although he said the sleep study was inconclusive yet abnormal, he still wants to refer me to a Doctor who deals with Narcolepsy.


With that being said, I have an appointment Feb. 15th with the Cleveland Clinic. I will be seeing the head of the Sleep Disorder and Pulmonary department. This Doctor not only specializes in EDS, but N as well. So I am hoping I get some sort of an answer.


Fingers crossed for us both :) 

#26 dormir



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Posted 27 January 2013 - 09:29 PM

Wow!  The Cleveland Clinic!  I have come across it in my endless reading about sleep disorders and quest for answers.  I really, really hope it lives up to its expectations for you.  All of your symptoms sound like narcolepsy, but I'm not a doctor.  Maybe you will have some REM sleep on two of your naps that may help!