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A Weird Diagnosis.


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#1 iturnedintoamartian

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Posted 22 July 2013 - 06:01 PM

I finally got my diagnosis of N. However, it was under weird circumstances. I never went into REM in any of my naps. My sleep efficiency was great. Everything else was indicative. My doctor still diagnosed me, which was a great thing (especially because that means I don't have to have another test done). I had a ton of issues getting my results but he came to the conclusion because of not only my test results but also because of what him and I had talked about, things I had experienced.
I am definitely happy to have results, but it wasn't until I was actually in the doctor's office that there was something disturbing to me and it actually made me tear up- he said that during the sleep study, I actually slept quite well (could have fooled me) but that I was still classified as "moderately severe EDS". I started to cry a bit (not something I do often) thinking that, even though my sleep architecture seemed decent... I guess even as a person with these problems, you want to think that if you get really good, quality sleep, one day you might not be struggling to make it through the day. I will never NOT be tired. I will always be on medication if I want to function correctly. My body has a permanent malfunction and there is no cure. None. Knowing, really knowing, there is no fix really smacked me across the face. I guess, without knowing it, I was hoping for some spontaneous recovery, even though I have been going through this for 15 years. Anyone else experience similar emotions?

#2 Mmartens3

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Posted 22 July 2013 - 11:39 PM

I only went into REM in one nap. I slept 3 out 4 naps and my sleep latency was 2.9 minutes I think. My official dx from the study is IH but the dr has dx me with N based on my symptoms and my sleep latency. I understand what you are going through. I keep hoping there might be another reason why I am so tired and tht I might spontaneously recover someday. I am having a hard time wrapping my brain around the fact that I have a condition that won't go away and tat I have to be on meds the rest of my life. I am taking xyrem and it helps some. It seems to take the edge off. I am not as sleepy but I still feel exhausted and worn out. I just don't doze off as much as I did before.

#3 sk8aplexy

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Posted 22 July 2013 - 11:54 PM

My circumstances were sort of odd to them, in that I didn't complain of being tired, my complaints were very much specifically to Cataplexy.  Although, I did have complaints of fatigue and weakness, I also new I'd experienced a lot of fogginess or that cloudiness, mentally here and there.  -I'd never noted how tired I, always, actually was. Somehow (the body and mind can play some odd tricks)?-

My 'mean' sleep latency was 9 minutes, which is over the 8 minute guideline.  But, I fell asleep in all 5 naps and experienced 2 SOREMPs.

A 'Probable Narcolepsy with Cataplexy' diagnosis was given, however they said I clearly was experiencing Cataplexy and explained that the guidelines of the diagnosis are strict so they added the 'Probable' because I was over the 8 minute line. 
This was at a very renown place, Mayo Clinic.  They also acknowledged that my mean may have been a bit lower, had someone not opened the door a few minutes into my 3rd nap, which had definitely occurred and effected such...

No big deal, it was enough of a confirmation; such being the reason I'd gone.

 

Today, at this point, the Cataplexy has lessened dramatically yet the EDS and/or, now daily, sleep attacks has increased somewhat dramatically.  It's always some trade-off, in or of symptoms, it seems...

 

Over the course of the first couple of years grasping understanding and retrospectively diving into my past, there were many pains and also fears.  Upon reading some of the facts, some pains and fears were stronger than other, however I couldn't help but think that I'd been already dealing/living with it for so long, that nothing really had changed in learning such.  Over more time though, such grew into perhaps a sort of strength.  As, because, at least being aware of and/or more able to recognize as well as understand what is and has been occurring; with the gained awareness, certain probabilities and/or possibilities, there is and/or becomes more ability for some control, predicting of...  If that last bit makes any sense?..!



#4 Megssosleepy

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Posted 23 July 2013 - 10:22 AM

I finally got my diagnosis of N. However, it was under weird circumstances. I never went into REM in any of my naps. My sleep efficiency was great. Everything else was indicative. My doctor still diagnosed me, which was a great thing (especially because that means I don't have to have another test done). I had a ton of issues getting my results but he came to the conclusion because of not only my test results but also because of what him and I had talked about, things I had experienced.
I am definitely happy to have results, but it wasn't until I was actually in the doctor's office that there was something disturbing to me and it actually made me tear up- he said that during the sleep study, I actually slept quite well (could have fooled me) but that I was still classified as "moderately severe EDS". I started to cry a bit (not something I do often) thinking that, even though my sleep architecture seemed decent... I guess even as a person with these problems, you want to think that if you get really good, quality sleep, one day you might not be struggling to make it through the day. I will never NOT be tired. I will always be on medication if I want to function correctly. My body has a permanent malfunction and there is no cure. None. Knowing, really knowing, there is no fix really smacked me across the face. I guess, without knowing it, I was hoping for some spontaneous recovery, even though I have been going through this for 15 years. Anyone else experience similar emotions?

 

I can understand crying, it is a very sad thing to know that no matter what we do or try we will always have this.  You are lucky to have a Doc that gave you the DX despite the MSLT.  I wish earlier docs were right... "all you need is to eat better, exercise, and go to bed earlier" yeahhhhhh right... 

 

Did your results show you going into SWS? 

 

I got my DX with no SOREMS (even though I remember dreaming) But I feel asleep less than or around a minute in all four naps.

 

I think there are many emotions that comes along with a DX and for years after... Its a grieving process, we have to grieve the loss of a normal life and the time spent wasted on sleeping and in a fog.  We may feel angry, sad, guilty ect... the main thing to remember is to try not to blame yourself for shortcomings you cant control.  Its not your fault and never was.  Hopefully you will find treatment that works well and can start creating a life with N that you can live with.