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#1 stoic

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Posted 12 December 2012 - 08:06 PM

Does it matter if you don't get a clinical diagnosis for Narcolepsy if you believe you have it?

I recently went to a sleep doc about the difficulties I was experiencing with nocturnal sleep. I scored a 12 on the Epworth Sleepiness Scale. The doc immediately suggested Narcolepsy and scheduled a PSG and MSLT. This totally took me by surprise. Like most people I was completely ignorant about Narcolepsy and its symptoms.

I had somewhat interrupted sleep for my PSG, but the person monitoring me said when I did sleep it looked quite good. For my MSLT, I'm guessing my mean to sleep was 12 minutes, which I believe is normal. I did have what I term dream fragments whilst I was awake, but can't remember if I was actually dreaming during my naps.

I don't get my results until the new year, but I wonder if they really matter now. If I look back now Narcolepsy seems to fit me perfectly, even if it's only very mild. My friends and family all joke about me and my "naps". It wasn't until I started researching Narcolepsy that I realised normal people don't typically get so tired that they have to take a nap. It's to the point now, that my wife knows when I've reached this point and she'll find somewhere for me to nap and make an excuse to whoever we are with. I thought it was normal to fall asleep on buses, trains, planes (even take off and landing), watching TV and movies, at social occasions, etc.

I also didn't realise it was abnormal to have dreams whilst you're awake and trying to sleep. It was actually quite funny, the other night as we lay down to sleep I was able to tell my wife about these dream fragments I was getting as they occurred. One minute there was a car robbery the next it was skiing. I'm able to count these dream fragments as they occur and it's not uncommon for me to get 5-10+ of these as I'm trying to fall asleep.

I didn't realise being irritable and moody due to constant and extreme tiredness was abnormal. I didn't realise it was abnormal to be completely refreshed and alert after a 5 minute nap.

I didn't realise that Narcolepsy can cause disrupted nocturnal sleep - to the point that I can't remember if or when I've ever needed to use an alarm clock. And it's the weirdest feeling being completely and utterly exhausted yet waking up in the middle of the night completely alert and awake - begging your body to fall asleep and rest.

I didn't realise that Narcolepsy can cause weight gain and can disrupt appetite - to the point that I can only remember two times where I felt satisfied by a meal and no longer hungry.

It's strange because with Narcolepsy so many things in the past 15+ years of my life make perfect sense now. I don't know if I'll get an actual diagnosis of Narcolepsy, but I wonder if it matters? It seems to fit so perfectly and explain so much...

#2 Hank

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Posted 12 December 2012 - 09:31 PM

Does it matter if you don't get a clinical diagnosis for Narcolepsy if you believe you have it?

I recently went to a sleep doc about the difficulties I was experiencing with nocturnal sleep. I scored a 12 on the Epworth Sleepiness Scale. The doc immediately suggested Narcolepsy and scheduled a PSG and MSLT. This totally took me by surprise. Like most people I was completely ignorant about Narcolepsy and its symptoms.

I had somewhat interrupted sleep for my PSG, but the person monitoring me said when I did sleep it looked quite good. For my MSLT, I'm guessing my mean to sleep was 12 minutes, which I believe is normal. I did have what I term dream fragments whilst I was awake, but can't remember if I was actually dreaming during my naps.

I don't get my results until the new year, but I wonder if they really matter now. If I look back now Narcolepsy seems to fit me perfectly, even if it's only very mild. My friends and family all joke about me and my "naps". It wasn't until I started researching Narcolepsy that I realised normal people don't typically get so tired that they have to take a nap. It's to the point now, that my wife knows when I've reached this point and she'll find somewhere for me to nap and make an excuse to whoever we are with. I thought it was normal to fall asleep on buses, trains, planes (even take off and landing), watching TV and movies, at social occasions, etc.

I also didn't realise it was abnormal to have dreams whilst you're awake and trying to sleep. It was actually quite funny, the other night as we lay down to sleep I was able to tell my wife about these dream fragments I was getting as they occurred. One minute there was a car robbery the next it was skiing. I'm able to count these dream fragments as they occur and it's not uncommon for me to get 5-10+ of these as I'm trying to fall asleep.

I didn't realise being irritable and moody due to constant and extreme tiredness was abnormal. I didn't realise it was abnormal to be completely refreshed and alert after a 5 minute nap.

I didn't realise that Narcolepsy can cause disrupted nocturnal sleep - to the point that I can't remember if or when I've ever needed to use an alarm clock. And it's the weirdest feeling being completely and utterly exhausted yet waking up in the middle of the night completely alert and awake - begging your body to fall asleep and rest.

I didn't realise that Narcolepsy can cause weight gain and can disrupt appetite - to the point that I can only remember two times where I felt satisfied by a meal and no longer hungry.

It's strange because with Narcolepsy so many things in the past 15+ years of my life make perfect sense now. I don't know if I'll get an actual diagnosis of Narcolepsy, but I wonder if it matters? It seems to fit so perfectly and explain so much...


You described all that so well. If you are diagnosed with Narcolepsy, you sound comfortable with that answer. I am curious, have you experienced any muscle weakness associated with emotions. Cataplexy can be quite mild and hard to identify. I was certain I did not have Cataplexy until I learned more about what Cataplexy is- then it all made sense. If you have already considered this and do not experience Cataplexy, please disregard my comments. Whatever your answer is, it will likely be a relief to have the answer.

#3 Megssosleepy

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Posted 13 December 2012 - 01:03 PM

The only reason that I can think of that you would need an actual diagnosis of Narcolepsy is for Xyrem. I think the only way to get the scrip is to be Dxed... other then that all that matters is that you know!

#4 stoic

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Posted 13 December 2012 - 02:17 PM

You described all that so well. If you are diagnosed with Narcolepsy, you sound comfortable with that answer. I am curious, have you experienced any muscle weakness associated with emotions. Cataplexy can be quite mild and hard to identify. I was certain I did not have Cataplexy until I learned more about what Cataplexy is- then it all made sense. If you have already considered this and do not experience Cataplexy, please disregard my comments. Whatever your answer is, it will likely be a relief to have the answer.


Thanks Hank. I've thought about this quite a bit but can't remember that ever happening to me. However, I'm going to be much more observant going forward, just in case.

#5 dormir

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Posted 13 December 2012 - 05:13 PM

I hope you get the answers you want and the treatment you need.

#6 stoic

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Posted 13 December 2012 - 06:59 PM

I hope you get the answers you want and the treatment you need.


Thank you, I guess it really doesn't matter what the label is - I just want to start feeling better.

#7 SeeBee

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Posted 13 December 2012 - 08:25 PM

I hope you get the answers you want and the treatment you need.

Couldn't have said it better myself. That last couple of weeks can be nerve-wracking, and I hope you get through it with relative ease.

#8 stoic

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Posted 14 December 2012 - 02:45 PM

Couldn't have said it better myself. That last couple of weeks can be nerve-wracking, and I hope you get through it with relative ease.


Thanks SeeBee!

#9 stoic

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Posted 08 January 2013 - 07:48 PM

Well I apparently don't have narcolepsy. MSLT was normal. Apparently only fell asleep for two naps. This was even though the PSG showed fragmented and reduced sleep (~5 hours total). Which meant I should have been much sleepier.

Strangely enough though, I've continued with scheduled naps and have consistently managed >7 hours nocturnal sleep and feel like I probably fall asleep within 5-10 minutes for each nap (usually 3-4 per day).

I feel a little lost now and the only solution is to get more sleep studies done. Not sure if it's worth it, considering how dramatic an improvement I've gotten from scheduled naps - figure I should just stick with those.

#10 munky

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Posted 13 January 2013 - 12:05 AM

Whether or not you go on to more testing is, of course, up to you. If the scheduled naps are working and not interfering with the rest of your life, and you want to just keep on with that, then good! You've found what works for you, and you can work with it. The choice is entirely yours, and though it may not mean much, you have my support for whatever you decide!

 

However, I would like to play "devils' advocate" for a moment. You may have already considered this, but I think it's important--for your own sake--to be sure you have.

 

The current test results show no narcolepsy, and that's good. It's an answer. It is not, however, the answer. There is obviously something wrong, or you wouldn't have thought narcolepsy was a possibility. You know now that it doesn't seem to be narcolepsy, but you do not know what it actually is. Further testing may find the answer and result in a treatment other than--and possibly superior to--scheduled naps.

 

Again, I'm not trying to make you chagne your mind. It's just something to consider. Ultimately, you have to decide what's best for you, whatever that is.



#11 stoic

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Posted 16 January 2013 - 08:06 AM

munky, thanks for your thoughtful input.

 

I agree with you actually as you make an excellent point. I think I've learnt to cope with the problem (whatever it is) for so long now that it's easy just to put it into the background. It's not until my nocturnal sleep completely falls apart that I can't cope. However, the EDS is something I really should sort out.

 

Once things settle down in a month or two, I think I'll follow up further. Thanks!



#12 munky

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Posted 17 January 2013 - 08:29 PM

Glad I could help! And good luck, when you do follow up, finding out what's going on and finding the right treatment. I hope you keep us updated, because I'll be interested to hear how it's going with you!