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Going Through The Diagnosis Dance


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#1 SleepySiren

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Posted 21 December 2012 - 09:44 AM

Hi so I am new here and have mostly been reading some and felt I needed to share a bit of my story. I am 41 and had been a single mother of three for most of my life. Coming from a very ambitious family and being the least overachiever in the bunch I thought that working to make ends meet you were just doomed to be exhausted and wondered how they did it. I thought that I was just lazy and not meant to be as dedicated and overly ambitious as the rest of my family.I tried several times to go enroll myself into higher education but with the demands of work and 3 children found it impossible to keep up with the busy schedule as something would always suffer. Well the kids are all mostly grown the youngest now being 16. I managed to do quite well as an insurance agent without a college degree but have noticed myself nodding off at work a lot lately and in the car at red lights. The worst was when I imagined a "map" in my eye sight and had in stuck in my head I had a destination I had to "reach" on that map where I needed to turn right at the light to get there and in reality I needed to go left to get to my home. When I realized this I wondered where on earth this came from? Was I playing too many video games? Was I going insane? Why was my sleep life leaking into my waking life? So I went to my doctor complaining of extreme exhaustion. I thought HE was insane when he suggested I might have narcolepsy! You see I had no understanding of this condition. So off to the sleep doc I went. Now I am questioning my whole life, the life of my mother and her habits as well as her father. Then there are genetics. I really should probably not read, lol. You see my mother is half Japanese, I always thought that I had trouble sleeping at night and wanted to sleep during the day because I was the first one on that side of the family actually born in the US. So I thought that my clock was messed up because I was meant to be living on the other side of the world or something. Now that probably is insane, lol. You have to understand that this is something that I have struggled with my whole life, I watched my mother struggle with, my grandparents both struggled with and it was always worse during pregnancy!

Anyway, I managed to get my hands on a copy of the MSLT and my sleep latency for 5 naps was 5.4 minutes with one definite REM episode (Nap 4) and one equivocal/probable REM (epoch 494, Nap 3). The thing for me I guess is that now I have to come to grips with all of these emotions. If I do have Narcolepsy and I finally find out what is wrong with me then yippee great I can get some treatment and perhaps relief, and maybe I can be proactive in having my children screened. But if I do, what of all of the time that has been lost, what could have been had I been diagnosed sooner, what could I have accomplished in my life with the benefit of not being so exhausted. How was I to know it wasn't normal to have so many strange dreams every night? How was I to know that I wasn't supposed to be waking up so many times in a night? Who was there to tell me? What was the standard to compare to? I can't go back and I can't be bitter for the lost time, I just feel robbed of a whole lifetime for some reason! Does anyone else?

#2 Megssosleepy

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Posted 21 December 2012 - 11:04 AM

Anyway, I managed to get my hands on a copy of the MSLT and my sleep latency for 5 naps was 5.4 minutes with one definite REM episode (Nap 4) and one equivocal/probable REM (epoch 494, Nap 3). The thing for me I guess is that now I have to come to grips with all of these emotions. If I do have Narcolepsy and I finally find out what is wrong with me then yippee great I can get some treatment and perhaps relief, and maybe I can be proactive in having my children screened. But if I do, what of all of the time that has been lost, what could have been had I been diagnosed sooner, what could I have accomplished in my life with the benefit of not being so exhausted. How was I to know it wasn't normal to have so many strange dreams every night? How was I to know that I wasn't supposed to be waking up so many times in a night? Who was there to tell me? What was the standard to compare to? I can't go back and I can't be bitter for the lost time, I just feel robbed of a whole lifetime for some reason! Does anyone else?


I think we all struggle with these questions, having lived with this for so long, and having lost what could of been. The problem is we cant get those years back, but what we can do is look forward to a new and better future. With treatment maybe you can finally get that degree, or anything else you have been to tired to accomplish! You may find you will have a new lease on life, Like many of us here!

I think most of us were confused when the doc first mentioned the N word... the media has really make a taboo of the disease, for most of us we fight those nagging sleep attacks so well... and dont understand the subtle hints of Catplexy... As you are going though this, try reminding yourself that its not your fault, and that you cant turn back the clock, but you can take control of your future.

Good Luck, and welcome to the NN!

#3 DeathRabbit

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Posted 21 December 2012 - 11:05 AM

Hi so I am new here and have mostly been reading some and felt I needed to share a bit of my story. I am 41 and had been a single mother of three for most of my life. Coming from a very ambitious family and being the least overachiever in the bunch I thought that working to make ends meet you were just doomed to be exhausted and wondered how they did it. I thought that I was just lazy and not meant to be as dedicated and overly ambitious as the rest of my family.I tried several times to go enroll myself into higher education but with the demands of work and 3 children found it impossible to keep up with the busy schedule as something would always suffer. Well the kids are all mostly grown the youngest now being 16. I managed to do quite well as an insurance agent without a college degree but have noticed myself nodding off at work a lot lately and in the car at red lights. The worst was when I imagined a "map" in my eye sight and had in stuck in my head I had a destination I had to "reach" on that map where I needed to turn right at the light to get there and in reality I needed to go left to get to my home. When I realized this I wondered where on earth this came from? Was I playing too many video games? Was I going insane? Why was my sleep life leaking into my waking life? So I went to my doctor complaining of extreme exhaustion. I thought HE was insane when he suggested I might have narcolepsy! You see I had no understanding of this condition. So off to the sleep doc I went. Now I am questioning my whole life, the life of my mother and her habits as well as her father. Then there are genetics. I really should probably not read, lol. You see my mother is half Japanese, I always thought that I had trouble sleeping at night and wanted to sleep during the day because I was the first one on that side of the family actually born in the US. So I thought that my clock was messed up because I was meant to be living on the other side of the world or something. Now that probably is insane, lol. You have to understand that this is something that I have struggled with my whole life, I watched my mother struggle with, my grandparents both struggled with and it was always worse during pregnancy!

Anyway, I managed to get my hands on a copy of the MSLT and my sleep latency for 5 naps was 5.4 minutes with one definite REM episode (Nap 4) and one equivocal/probable REM (epoch 494, Nap 3). The thing for me I guess is that now I have to come to grips with all of these emotions. If I do have Narcolepsy and I finally find out what is wrong with me then yippee great I can get some treatment and perhaps relief, and maybe I can be proactive in having my children screened. But if I do, what of all of the time that has been lost, what could have been had I been diagnosed sooner, what could I have accomplished in my life with the benefit of not being so exhausted. How was I to know it wasn't normal to have so many strange dreams every night? How was I to know that I wasn't supposed to be waking up so many times in a night? Who was there to tell me? What was the standard to compare to? I can't go back and I can't be bitter for the lost time, I just feel robbed of a whole lifetime for some reason! Does anyone else?

I know how you feel. I feel especially like the last two or three years of my life have almost been a waste. But there are always good parts. You're a successful parent, that's gotta count for something! Just try to look at it like this. You were dealt a severe handicap and still managed to do something a lot of people can't do!

#4 SleepySiren

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Posted 21 December 2012 - 11:19 AM

I think we all struggle with these questions, having lived with this for so long, and having lost what could of been. The problem is we cant get those years back, but what we can do is look forward to a new and better future. With treatment maybe you can finally get that degree, or anything else you have been to tired to accomplish! You may find you will have a new lease on life, Like many of us here!

I think most of us were confused when the doc first mentioned the N word... the media has really make a taboo of the disease, for most of us we fight those nagging sleep attacks so well... and dont understand the subtle hints of Catplexy... As you are going though this, try reminding yourself that its not your fault, and that you cant turn back the clock, but you can take control of your future.

Good Luck, and welcome to the NN!


Thank you so much! And I agree, but then the media has a tendency to do that with most everything I think!

#5 SleepySiren

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Posted 21 December 2012 - 11:23 AM

I know how you feel. I feel especially like the last two or three years of my life have almost been a waste. But there are always good parts. You're a successful parent, that's gotta count for something! Just try to look at it like this. You were dealt a severe handicap and still managed to do something a lot of people can't do!


Thank you! It's nice to know that people understand, but sad at the same time! The idealist in me wishes that none of us had to. But then again I never knew that anything was out of the norm until just recently, lol! So I guess ignorance really is bliss, until you get to wake up for just a bit! I just hope that if this is what I have I can make sure to have my kids tested so that they can get treated now! We all deserve treatment! I appreciate all of you and all the kind words and support :)

#6 SleepySiren

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Posted 21 December 2012 - 02:09 PM

I was just wondering if anyone else "sneaks" off to the bathroom to catnap and if that makes me a terrible person?

#7 DeathRabbit

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Posted 21 December 2012 - 03:39 PM

I was just wondering if anyone else "sneaks" off to the bathroom to catnap and if that makes me a terrible person?


I use my lunch break to nap. I have also occasionally shut my door and closed my eyes for a few minutes. Sometimes that's enough to perk me up. I feel bad too, but hey, you gotta do waht you gotta do.

#8 SeeBee

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Posted 21 December 2012 - 04:01 PM

Hi so I am new here and have mostly been reading some and felt I needed to share a bit of my story. I am 41 and had been a single mother of three for most of my life. Coming from a very ambitious family and being the least overachiever in the bunch I thought that working to make ends meet you were just doomed to be exhausted and wondered how they did it. I thought that I was just lazy and not meant to be as dedicated and overly ambitious as the rest of my family.I tried several times to go enroll myself into higher education but with the demands of work and 3 children found it impossible to keep up with the busy schedule as something would always suffer. Well the kids are all mostly grown the youngest now being 16. I managed to do quite well as an insurance agent without a college degree but have noticed myself nodding off at work a lot lately and in the car at red lights. The worst was when I imagined a "map" in my eye sight and had in stuck in my head I had a destination I had to "reach" on that map where I needed to turn right at the light to get there and in reality I needed to go left to get to my home. When I realized this I wondered where on earth this came from? Was I playing too many video games? Was I going insane? Why was my sleep life leaking into my waking life? So I went to my doctor complaining of extreme exhaustion. I thought HE was insane when he suggested I might have narcolepsy! You see I had no understanding of this condition. So off to the sleep doc I went. Now I am questioning my whole life, the life of my mother and her habits as well as her father. Then there are genetics. I really should probably not read, lol. You see my mother is half Japanese, I always thought that I had trouble sleeping at night and wanted to sleep during the day because I was the first one on that side of the family actually born in the US. So I thought that my clock was messed up because I was meant to be living on the other side of the world or something. Now that probably is insane, lol. You have to understand that this is something that I have struggled with my whole life, I watched my mother struggle with, my grandparents both struggled with and it was always worse during pregnancy!

Anyway, I managed to get my hands on a copy of the MSLT and my sleep latency for 5 naps was 5.4 minutes with one definite REM episode (Nap 4) and one equivocal/probable REM (epoch 494, Nap 3). The thing for me I guess is that now I have to come to grips with all of these emotions. If I do have Narcolepsy and I finally find out what is wrong with me then yippee great I can get some treatment and perhaps relief, and maybe I can be proactive in having my children screened. But if I do, what of all of the time that has been lost, what could have been had I been diagnosed sooner, what could I have accomplished in my life with the benefit of not being so exhausted. How was I to know it wasn't normal to have so many strange dreams every night? How was I to know that I wasn't supposed to be waking up so many times in a night? Who was there to tell me? What was the standard to compare to? I can't go back and I can't be bitter for the lost time, I just feel robbed of a whole lifetime for some reason! Does anyone else?


As Megs said, I think all of us struggle with this to some degree. I was diagnosed at 15, and still had a lot of similar feelings and questions, if that tells you anything. I'm just amazed that you managed to work AND raise three kids while fighting this for so long, that's some serious dedication!

By the way, no, napping in the bathroom doesn't make you a terrible person, it makes you a resourceful one - after all, think of how much more efficient your work will be after your nap :)

Good luck with your treatments, and welcome to the boards!

#9 Duck Master AJ

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Posted 21 December 2012 - 06:50 PM

I was just wondering if anyone else "sneaks" off to the bathroom to catnap and if that makes me a terrible person?


I don't do it intentionally, but sometimes it just happens. I've never actually fallen off, though :)! I agree with SeeBee - that's being resourceful. I'm an undergrad at a small, private university, and I do research with one of the professors in the chemistry department. I converted a door-less cabinet into my nest, complete with a blanket, for micro-napping while the centrifuge is running. It baffles people that I can sleep in there (it's not very big, maybe a 2.5'x2.5'x2' cube), but at least I found a use for the space!

#10 munky

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Posted 22 December 2012 - 01:33 AM

I was just wondering if anyone else "sneaks" off to the bathroom to catnap and if that makes me a terrible person?


I go down to my car and curl up in the back seat on my lunch break. I keep a pillow and blanket in there, as well as a hood I removed from my winter jacket that I can put over my head if I had to park somewhere that the lights shine into the back seat. And I have an agreement with my shift manager: If the weather makes napping in my car too dangerous, I can use an empty office in our area.

#11 SleepySiren

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Posted 22 December 2012 - 08:18 AM

Thanks all, I too sleep in my car at lunch. I have two blankets in there, one as a pillow and one to cover myself. I always found it odd that I could fall asleep in there in broad daylight cause at night I need it to be dark and no distractions but during the day i can be so exhausted that the least provocation and it's lights out, lol. It's nice to have people to talk to! Thank you all!

#12 stoic

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Posted 23 December 2012 - 04:45 AM

I was just wondering if anyone else "sneaks" off to the bathroom to catnap and if that makes me a terrible person?


I've tried this a few times but could never get comfortable enough to actually sleep.

#13 SleepySiren

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Posted 24 December 2012 - 09:56 PM

I've tried this a few times but could never get comfortable enough to actually sleep.


Lol, I don't sleep long, but I have found just closing my eyes for a bit keeps me from nodding out at my desk and that is what I am trying to avoid at all costs. I have also found that just the walk to the bathroom helps get my circulation pumping enough to keep me from having my fingers wandering and typing jibberish as I drift off at my desk. Life in a cubicle can be really difficult for me sometimes...

#14 stoic

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Posted 24 December 2012 - 10:35 PM

Lol, I don't sleep long, but I have found just closing my eyes for a bit keeps me from nodding out at my desk and that is what I am trying to avoid at all costs. I have also found that just the walk to the bathroom helps get my circulation pumping enough to keep me from having my fingers wandering and typing jibberish as I drift off at my desk. Life in a cubicle can be really difficult for me sometimes...


Interesting! I remember fighting sleep on a train ride once. At some point my eyes closed and my head fell. However, as soon as my head dropped, the jarring woke me. I was immediately awake and 100% alert. I would have only been asleep for a split second but felt fine afterwards. I could never understand how I could be fighting to stay awake one second and fully alert and awake the next.

I think I'll try your technique next time.

#15 SleepySiren

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Posted 26 December 2012 - 10:39 AM

Interesting! I remember fighting sleep on a train ride once. At some point my eyes closed and my head fell. However, as soon as my head dropped, the jarring woke me. I was immediately awake and 100% alert. I would have only been asleep for a split second but felt fine afterwards. I could never understand how I could be fighting to stay awake one second and fully alert and awake the next.

I think I'll try your technique next time.


I fight my sleep all the time. Like a little baby fights their sleep... sometimes I can do it for such long periods it's amazing! But the minute I stop to take a bath or lay down to watch TV or get in the car I am out! I used to think it was environmental, or it was easy to blame it on that anyway. I thought when I got in the car the fumes were making me fall asleep, I wondered why I was more susceptible to the exhaust then everyone else, or why I was like a baby being lulled to sleep but the car can be off and I will instantly fall asleep in it. Even in 90 degree bright weather. I wondered if my mother-in-law thought I was rude or just comfortable when every time I visit them and sat on their couch I would fall asleep within 10 minutes. I always thought it was because they smoked so much in their house and the carbon monoxide or something was knocking me out.

Well I found out this weekend that my mother is falling asleep at her computer.. Head dropping and all. She swears it's from bigeminy which she was recently diagnosed with but she has never had a sleep test. My grandfather, her father also took a lot of naps and had difficulty sleeping at night, however I don't know if that had anything to do with apnea or N because he was overweight. Come to think of it so is she, but no one ever witnessed him dropping his head falling asleep or doing odd auto behavior type things. My son has been living with my mom and he came home for the holidays. Apparently she has been dancing on her computer chair and other strange things... but when I mentioned to her she should have a sleep study she got very angry with me so I dropped it... I don't know very much about the Japanese side of our family because I don't get to talk to them for obvious long distance language barrier reasons but I wish she wasn't so closed up about this. I have so many questions.

#16 dormir

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Posted 29 December 2012 - 01:19 PM

The questions you are asking yourself are totally normal.

I haven't been diagnosed yet (I'm still waiting to hear about the results of the sleep study), but I was diagnosed with ADHD as an adult and I had to mourn the opportunities, friendships, and other things lost to my non-medicated, non-diagnosed self. My life would be very different had I been diagnosed younger.

You should mourn those things because it is sad, but don't get stuck there. It isn't necessarily your fault that you weren't diagnosed sooner. As long as you work through the sadness and frustration, you will be a healthier, happier person later. It takes time, but I think as weird as this sounds, you have to go through the steps of grieving when you get a diagnosis that literally and dramatically alters your life.

#17 SleepySiren

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Posted 24 January 2013 - 10:19 AM

Thanks Dormir!  I think you are absolutely right!  It is a grieving process, I have never been an emotional person but this has been very emotional for me.  Frustrating mostly. I did get diagnosed, as far as I know.  The docs faxed papers to the insurance carrier for my meds saying they needed approval for them to treat N, so I am assuming that is a DX.  I honestly did not think they would disgnose me and still am in shock..  At my age I would have thought it to be more of a hormonal thing!  I guess I have a lot to learn!