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Understanding My Girlfriend's N


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#1 Mitch

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Posted 08 February 2011 - 10:37 PM

I've known my current GF for well over 3 years, and have been dating her for 5 months. She's pretty much been my best friend over the past few years, and I've seen her N progress accordingly. She was diagnosed about a year and a half ago, and is still in somewhat of a defeatist attitude, but still works her cute little butt off going to school and working. Don't get me wrong, seeing what she's going through wrenches at my heart, but one of my favorite things about it is the frequent naps I get to take with her curled in my arms ^_^. I've covered narcolepsy in a Psychology class, and have spent days researching it, but her case is different.. I've personally witnessed/been there for her when she's had hallucinations, and have on many occasions had her go into somewhat of an automatic state (microsleeps?), and she's told me about times where she loses muscle tone, but never passes out. The thing that has me confused is that she says she has a rare form of N, whereas she actually skips over REM? Has anyone heard of this? She doesn't dream, and because of the lack of REM she has a very hard time with muscle tissue regeneration and other aspects revolving around the regenerative process of REM. This has caused her to have to quit playing sports, and even quit working out, because the tearing of muscle wouldn't regenerate/rebuild at a normal pace, and would actually be somewhat dangerous.

Thanks for taking the time to read, much gratitude for any helpful input!

#2 sdsmith

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Posted 10 February 2011 - 01:35 PM

Hi Mitch:

There's nothing that warms our hearts more than a friend or family member taking an active interest in our diagnosis and treatment!

If it weren't for the cataplexy-type symptoms you mention, I would say that your g/f was misdiagnosed. This is because, absent cataplexy, sleep-onset REM must occur in 3 or more of the daytime naps in order to diagnose narcolepsy. A person who falls asleep in all the naps but does not have sleep-onset REM would meet the criteria for 'excessive daytime sleepiness' and, afte ruling out other possible causes, would most likely be diagnosed with idiopathic hypersomnia.which is a catchall diagnosis meaning "hypersomnia"with no known origin".

So, the existence of cataplexy is a key factor in determining whether narcolepsy is the appropriate diagnosis your g/f's case. To be cataplexy, there should be at least one identifiable sudden emotional trigger each time it occurs - things like hearing the punchline of a joke, witnessing something funny but unexpected, or suddenly being frightened or angered. Sudden but unexpressed thoughts or feelings can trigger cataplexy, so the onlooker will not necessary be aware that a trigger has occurred.

You mention that your g/f's lack of REM causes her to have muscle regeneration issues. A lack of REM sleep alone should not cause muscle problem, although it could exacerbate cataplexy (which is neurological);lack of REM would translate to learning, memory and coping issues. A lack of deep sleep,which includes REM and stages 3 and 4 sleep) could translate to muscle issues.

Your g/f's muscle issues are another matter separate from narcolepsy or idiopathic hypersomnia. Has she sought a diagnosis outside the sleep medicine specialty? The burning question is whether the muscle problems are a primary disorder (unrelated to sleep) or secondary to a sleep problem. Although I'm just a fellow narcolepsy patient and not a medical professional, I can think of numerous possibilities in the specialty areas of neurology, rheumatology and immunology. Fibromyalgia and myasthenia gravis come to mind. Any kind of pain can severely impact sleep quality, as can an undetected sleep disorder such as sleep apnea or periodical limb movement disorder.

Once your g/f is comfortable that she has the correct diagnoses (note plural) her doctors should coordinate to develop a treatment plan since treatments for one disorder could exacerbate another. If she does indeed have narcolepsy and especially if she has cataplexy and/orfibromyalgia, she should seriously consider the medication Xyrem. Xyrem is taken at night for treatment of cataplexy and excessive daytime sleepiness associated with narcolepsy, It has also shown success in treating Fibromyalgia. One side benefit of Xyrem is that it improves and consolidates sleep. It may get your g/f the deep sleep she is lacking. (BTW, when you're ready, you can get more information about Xyrem by searching NN's website, at www.xyrem.com, and/or by calling the Xyrem Success Program at 1-800-XYREM88).

Your g/f needs highly knowledgeable and competent physicians skilled in differential diagnoses to address her situation. The best and most up-to-date physicians are often those affiliated with medical schools. If you need help finding a sleep physician in your area, a good resource is www.sleepcenters.org. If that doesn't help, submit a request via NN's contact page. Include a link to this post and be sure to mention your location.

Best wishes! With the right diagnoses and treatments, your g/f can get her life back!

Sharon

#3 Mitch

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Posted 10 February 2011 - 04:20 PM

Wow, thank you so much for the informative response!

"lack of REM would translate to learning, memory and coping issues."

That specifically has been a huge problem lately, she'll spend hours upon hours studying and using multiple memorization methods just to turn around and C+ a quiz. All the way up to about the middle of her sophomore year she'd always been an overachieving genius, so to speak. Always acing every class she took, and always being 1-2 classes ahead of her peers. This upcoming year she was actually going to have nothing but dual enrollment courses, and an automotive shop course (because she's damned amazing) ;D. Now that her memorization has taken such a drastic curve toward the worse though, along with the constancy of being tired, she's having more trouble than ever before (academically). I've noticed that it's somewhat of a snowball effect, as one thing leads to another, and that leads to stress, and stress leads to even more problems, and so on . . . and the only relief she's really got nowadays is time spent with me, which is beginning to diminish due to increased time needed to study.

About the muscle issues, I'm not aware of any trigger in her cataplexic (correct suffix?) episodes, and haven't asked her. I actually try not to talk with her about these kinds of things, as they tend to drown her mood. She has talked about having seen a Rheumatologist, though I'm not sure what, if any, diagnosis was made because of it. I may just have to ask her specifically about her REM issues, as you could possibly be right about the misdiagnosis, as I was also very confused when she told me that she has trouble entering and maintaining REM sleep.

#4 sleepless sleeper

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Posted 08 March 2011 - 12:52 AM

I didn't read the responses so I may be repeating here.

The way I understand it, deep sleep is needed for regeneration as it is one of two ways that the body produces growth hormone. Strenuous exercise is the other one.