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Struggling With What I Believe May Be The Big N


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#1 MeanJeanSoSleepy

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Posted 29 December 2012 - 07:24 PM

Hello all!! While I may be new here, I have been following this board for about a month now. I am so grateful to have a website like this, in a world where Narcolepsy is not well understood or talked about. I need some help and advice in regards to a battle I have been fighting for 12 years now. I apologize in advance as this is kind of a long story...

Since I was about thirteen years old, I have struggled with excessive fatigue and random sleep attacks. I have had friends whom would get mad at me, because I would always end up falling asleep on them with no warning. Movies, television shows, and sometimes conversations, have always been my struggling point, as I have always had this overwhelming urge to fall asleep for which I cannot control. I, along with my friends, always chalked it up to my busy schedule causing me to be so extremely tired and fatigued.

As I have gotten older, my sleeping episodes (as I call them) have happened not only during the usual movie or television show, but at school and in the work place. I have had no problems with falling asleep at my current job, as I am constantly running around and have no time to sit or be sedentary. My prior job however, I was a dental assistant, and I would always fall asleep sitting up in the chair, while I was assisting for long procedures on patients. When I was in college, I failed my film class, as I would always fall asleep during the movies in class. I learned, through my experiences in school, to always sit in the back of the classroom, as most classes I would end up falling asleep. I have also fallen asleep at loud bars while sitting up, and during social outings with friends. I do have an occasional good day, however I notice that my sleep episodes happen more frequently if I’m busy or stressed out.

My biggest problem however, is my excessive, excessive exhaustion and fatigue. It is all I can do to get out of bed in the morning, and any chance that I can get, I am always taking naps or sleeping. This is making it very hard for me to function as a normal human being anymore, as I feel to tired to want to do anything during a normal day. I have gone to Doctors for years regarding this, and every time they do lab work on me, it comes back completely normal. My thyroid levels, vitamin b-12, iron, etc, etc, are all perfectly normal. I’ve always been told by Doctors just to exercise and eat healthy, and that there is nothing else that they can do for me.

On top of everything above, I have been experiencing really bad sleep hallucinations that always seem to involve a spider or some sort of bug. Two weeks ago, my Husband found me sitting up in the bed, hitting the sheets, as I was trying to tell him that I was killing a spider. I can clear as day remember a giant spider as if it were actually there. In addition, I talk frequently in my sleep, and have episodes where I will try to wake up, but feel as though I can’t move or open my eyelids. I also wakeup on average between four to five times a night. My hallucinations and vivid dreams have become so frequent, that it's hard for me to tell the difference between my dreams and reality.

Most recently, my Husband and I were trying to do something together on the computer, in which he looked over at me and found me sleeping while sitting up. He woke me up, and told me that I had narcolepsy. I have heard this for years as I have always fallen asleep on him with no warning, and always thought he was joking. But it was at that moment when I realized to look into what he had said further, and found myself identifying with most of the symptomatology of Narcolepsy.

In regards to cataplexy, I can think back to only a couple episodes that I can account now for being cataplectic attacks. Most recently, being at work and laughing really hard at a joke, for which I then felt my knees buckle, I'm pretty sure was cataplexy.

I have an Epworth sleepiness scale score of 21. I recently completed an at home sleep study which was found negative for sleep apnea. It was noted however, that in the four hours it recorded my sleep, that I have frequent nighttime arousals, and that REM sleep was accounted for 17.5% of the time. I am scheduled January 18th for a PSG and MSLT.

Is it possible that I exhibit some of the signs and symptoms of narcolepsy? I am scared to go for my PSG and MSLT, as I am afraid that I will not be able to fall asleep due to anxiety. It’s not that I want something to be wrong with me, but I cannot live the rest of my life miserable as a zombie.

What advice would you recommend to me? I have tried to talk to numerous people regarding this, and they think I am crazy because they say everyone is tired, and that nothing is wrong with me. But I know me, and I know something is not right with me.

Any help, advice, or suggestions would be greatly appreciated. I thank you all so very much for taking the time to listen to my story.

#2 Pkay

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Posted 30 December 2012 - 06:46 PM

best bet is to try and see a neurologist and work towards a sleep study. Even if it isn't narcolepsy it's the first step in figuring out what is going on

In the meantime keep a diary of your sleep habits and incidents involving hallucinations and cataplexy like symptoms to show your dr. Even if you don't sleep the next day during your MSLT your doctor can take into account your situation at home on your average day

Just gotta get the ball rolling

#3 munky

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Posted 01 January 2013 - 01:44 AM

And above all, relax. Don't worry about the sleep study. I've posted this elsewhere, but I'll say it again.

Before my PSG/MSLT, I did a little research about the tests themselves and a little about sleep disorders in general, including narcolepsy, but I refused to let myself form an opinion about what the final diagnosis would be so that I wouldn't worry about getting the "right" results and the "right" diagnosis. I worried I wouldn't be able to sleep for the sleep study, because I always have a hard time sleeping in a strange bed--like at hotels, or at friends' houses. To help with that worry, I took along my own pillow--the one I curl up around when I sleep--and a favorite pair of pajamas, and otherwise made myself not think about it.

The absolute best thing you can do for yourself is NOT WORRY! Take a step back, take a deep breath, and let the worry go. If you worry too much about the results and getting the "right" diagnosis, you will affect those results and, therefore, the diagnosis. Instead, think of this as the first step to finding out just what's wrong and how to "fix" it. It's easier said than done, I know, but it's still the absolute best thing you can do for yourself.

I think what helped me most to let the worry go was a crazy dream I had while waiting for the sleep study. The whole thing is posted in the "just plain weird" section of the dreams forum down at the bottom, but the gist of it was me going in to get some test results and the doctor telling me all the problems I was having with sleep were caused by an enlarged prostate--and I'm female. The dream was pretty damned amusing, and I still laugh about it whenever I remember it--and whenever my best friend asks me how my prostate's doing and if the meds are helping. Laughing about that helped reduce the stress and worry, and finding something to laugh about might help with your stress and worries, too, though it's hard to find anything in the situation to laugh about. I got lucky with that dream.

So, to cut through all my babble, relax. Don't worry about what the results will be. You're on the right track. The PSG/MSLT will help you find out exactly what's going on. If you can keep calm and relaxed, the results will be exactly what they need to be to help you and your doctor figure out what's going on and how best to treat it.

#4 MeanJeanSoSleepy

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Posted 08 January 2013 - 02:41 PM

Thank you both for your time and suggestions to my current situation, I truly appreciate it.

I will be undergoing my PSG and MSLT a week from this coming Friday...hopefully from that I will be able to get some much needed answers.

I guess I have some more questions in regards to Narcolepsy;

1. Do PWN usually experience bad memory problems??
- I find myself having increased memory issues lately. Last Saturday I was driving to the Library, and totally forgot how to get there. I've lived in this town my whole life, yet trying to get to the Library, I almost had a panic attack because I forgot where it was.
- I will park my car, come out of a store, and forget where I parked.
- Last week I lost my car keys, only to find I had left them in the mailbox.

2. I will have episodes where I will get up to go do something, and I will black out. I will start to panic, and at that time, my legs feel like "jello" and will shake uncontrollably, and if I don't hold on to something, I will fall down. Its like my legs give out on me. Could this be a incidence or sign of Cataplexy? My blood work is all normal.

3. Lastly, do PWN have an occasional or few good days?

#5 MeanJeanSoSleepy

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Posted 08 January 2013 - 02:42 PM

Also, is it normal for a person to dream all the time and fully remember their dreams?? I have about one to three long lengthy/vivid dreams a night that I can remember plain as day.

#6 sleepywriter

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Posted 09 January 2013 - 02:31 PM

How did the PSG and MSLT go? To answer your other questions... people with narcolepsy can have memory issues, but any sleep deprivation can cause this. I forget where I park my car all.the.time and have to take photos to remind me lol. Your episodes where you get up to do something but black out...what do you mean by blacking out? You forget what you were doing or you pass out? Cataplexy is brought on by emotion like panic, but panic attacks in general can cause a person to be shaky and having trouble standing. Do you ever feel weakness when you experience other emotion? How about a wave of sleepiness? For your third question, yes, we do have good days and bad days. For me, the number of good days and bad days I have depends largely on me. If I don't keep a consistent sleep/wake schedule, practice good sleep hygiene, take meds, exercise, and eat well (sugar is my enemy), I can be certain I will have a string of bad days until I whip myself back into shape. Finally, I remembered most of my dreams prior to Xyrem. Now, I don't. I used to feel like I spent the entire night dreaming, and that was exhausting.

#7 MeanJeanSoSleepy

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Posted 11 January 2013 - 08:58 PM

Hi sleepywriter :) LOVE your blog by the way!! I am trying to get back into running again as I want to start doing 5k's :)!!

 

MY PSG and MSLT is exactly one week from today. I am looking forward to hopefully obtaining some much needed answers from this (hopefully). And I am looking forward to a day full of sleeping (yay!).

 

I like your car photo trick! I may need to start doing this! I think it would be very helpful. 

 

For years, I have had intermittent episodes where I will stand up and start to walk, and then my vision will go black. At that time, it then sends a chain reaction to both of my legs, which will feel like jello, sometimes shake uncontrollably, and if I am not holding on to something, my knees will give out on me and I will fall to the floor. I don't really feel weakness with any other emotion, but if I am nervous, I am extremely, extremely, clumsy and I will constantly drop things (it's like my hands stop working). And I get waves of sleepiness all day long..it's especially worst after lunch, and lasts throughout most of my afternoon. 

 

And yes, I totally relate to you with dreams being exhausting. I don't know if I mentioned this above, but it's frustrating when you have so many vivid dreams, that it's hard to differentiate them from reality a lot of the time. 



#8 dormir

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Posted 11 January 2013 - 11:38 PM

I have been posting about this, too.  

 

Since I was a little girl, I have dreamed vividly and multiple times a night.  All of my senses are engaged and the dreams are always bizarre/very rarely relevant to what is going on in my life.  I usually don't know the people or circumstances.  My dreams are often very loud and colorful.  Sometimes they're painful.  Once in a while they're terrifying.  I will usually remember all of the dreams for 24 hours or until I sleep and dream again.  I dream when I nap, too.

 

I can usually sense when a dream is something that I need to deal with in real life or a dream that is replaying something I need to pay attention to because the emotional feel in the dream is different.  

 

I cannot escape these dreams.  I want them to stop and I want to stop waking up after each dream, too.  I hope you can get some relief.  Knowing that you will go to sleep and do nothing but dream (or at least feel that way) is exhausting.  Knowing that you will wake up just as exhausted as when you went to sleep is very discouraging.  



#9 sleepywriter

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Posted 14 January 2013 - 05:46 PM

Oh, thank you!  I love blogging and am thrilled that people are enjoying it. :)  Let me know when you start running again; I would love to cheer you on! :)

 

I think it's funny you're looking forward to a full day of sleeping.  A lot of PWN say they hated the MSLT.  I, for one, loved it.  Getting to take five naps was super awesome, and I felt more refreshed that day than I remembered feeling in years.  I took my laptop with me that day and got a ton of stuff done.  I did get mad once when they woke me up, and I did get a little frustrated the time or two (or three) I would start to doze between naps and they'd come over the speaker, "Heather, don't fall asleep yet." LOL

 

Last night, I messed up and forgot to set my alarm for my second dose of meds.  As such, I had one of those terribly vivid dreams that feel more real than most of the daytime feels.  It made me realize just how much I do not miss experiencing them all night, every night.



#10 MeanJeanSoSleepy

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Posted 18 January 2013 - 02:19 PM

- Hi dormir!! I feel your pain!! Most people say they might dream, but not like that! My Dad seems to think that you can control what happens when you fall asleep, but  don't know what planet he is from ;)

 

- Sleepywriter: Thanks so much!! It is so comforting to know that their are other people who understand and are fighting the same battle with sleepiness.  Thanks for the little bit of insight with your PSG and MSLT. I plan on bringing a ton of stuff to keep me occupied as I know it's going to be a long night/day.

 

My PSG & MSLT is scheduled for tonight, and I am having mixed emotions. The hardest part for me right now is not being able to take a nap or drink any caffeine. So I am struggling to stay awake right now.

 

This sleep study couldn't have come at a better time. Last night we were out at a Restaurant and I ended up falling asleep twice while sitting up at the bar.  The bartender came over and asked me "are you sleepy"? I just hope I get some sort of answer from this study. I can't keep falling asleep at the bar.  Fingers crossed. 



#11 sleepywriter

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Posted 18 January 2013 - 04:43 PM

Good luck tonight and tomorrow!  Please let us know how it goes. 



#12 MeanJeanSoSleepy

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Posted 18 January 2013 - 05:04 PM

Thank you so much!! I will definitely come back and let you all know how it goes :) !!



#13 dormir

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Posted 18 January 2013 - 09:12 PM

Good luck!



#14 MeanJeanSoSleepy

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Posted 19 January 2013 - 06:50 AM

Thank you dormir :)

So PSG is completed, I'm just waiting for my MSLT today...

Sleep tech came in and said that I did not have OSA (which I knew) but that it's either pathological sleepiness (I think he meant IH) or N. He said I cycled through the stages pretty normally.

My question is, even if I don't hit any SOREMS during my MSLT but I have numerous symptoms of N, is that enough to be diagnosed?

As I said prior, I could not fight falling asleep sitting up at a bar the other night and I fell asleep twice. Would that still be IH?

#15 dormir

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Posted 19 January 2013 - 08:36 PM

I think it depends on your doctor, to be honest.  At least that is what I have understood from people on this board.  Some doctors seem totally resistant to prescribing anything that could help narcolepsy based on symptoms and inconclusive sleep studies, but some doctors seem very willing to try things like Xyrem and stimulants even if the sleep study was borderline and the symptoms aren't that severe.  



#16 MeanJeanSoSleepy

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Posted 20 January 2013 - 10:14 AM

Thanks dormir. I actually work for the Dr. who ordered the sleep study, and he says no matter what he will refer me to a Neurologist...

 

I pretty much failed by MSLT due to anxiety; I only slept 2 out of the 5 naps, and the tech said that it took longer than that for me to fall asleep. She said I kept coming close to falling asleep, but then something would happen and my heart rate would jump and keep me from falling asleep. My pulse usually runs at 56-60bpm's and yesterday it was in the high 90's. On top of anxiety, housekeeping kept banging stuff all day, and the noise of the ambulances also made it hard to fall asleep. 

 

So I pretty much failed my MSLT :( This has probably been asked before, but are there a lot of people who fail their MSLT due to anxiety and other environmental factors?

 

My sleep attacks and HH have been pretty bad lately and I'm just hoping I can get the help that I need, whatever that may be. 



#17 dormir

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Posted 21 January 2013 - 12:26 AM

You almost just described my MSLT experience exactly.  Literally, almost exactly.  That is uncanny how similar that sounds.  My doctor said that "no matter what, narcoleptics will fall asleep" but based on what people have shared here, that's not necessarily true.  This is what I'm working with though and it was exactly what I feared.  My sleep doctor didn't completely rule out narcolepsy, but I think he is ready to rule it out.

 

 

Do you know if you had REM sleep during the naps you feel asleep?

 

 

 

 

I'm glad you will be able to get a referral to a neurologist, though.  I think some doctor will want to give you the treatment that you will need.



#18 sk8aplexy

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Posted 21 January 2013 - 01:50 PM

2 SOREMs in 5 naps, hitting REM in each of the 5 naps, having the door opened midway through one of the naps, with my average time reaching REM being 9 minutes; with what is clear cut Cataplexy... 

A 'probable Narcolepsy with Cataplexy' diagnosis was given.

It simply is, whatever it is and that is, it; be...



#19 MeanJeanSoSleepy

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Posted 23 January 2013 - 08:39 PM

- 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!!!



#20 sk8aplexy

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Posted 23 January 2013 - 10:26 PM

Ya, no biggie, I was not after meds (perhaps stem cells or some other advanced thing, to come? oxygen/electric?); I am free of them though and the experience was all about confirmation and grasping of knowledge. This was at a 'notoriously world re-known' Clinic; so some of the best out there, at least would be the hope especially considering for the thousands (so ridiculous)... Anyways, with Cataplexy having always been more of an issue for me, as fatigue was seriously noted often, prior to the discovery on my own from a google search, which I couldn't believe the results of (being clueless of N w/ C for what it is): "laughter causing paralysis" at 28 years old. Now, I am able to gauge and note things much better. With what is also odd, Idiopathic Central Sleep Apnea which I have no option to treat (I'm up a ____ creek), I think they were being semi cautious and they told me had I had an average of 8 minutes rather than 9 minutes (which had someone not opened that door, would have been), the diagnosis would have been definitive; and they wanted to do a spinal tap alsoo, which I wasn't interested in as seriously what would I gain from such -don't need more headache/s-. There was more to it all of course, as I believe there is with this condition; it is not simple, it is complex (at least in my case, as it is, not the only matter of grave 'unknown complexity' with which I deal, day to day)... A cup of coffee in the morning and fruit smoothies or perhaps a tea in the afternoon, then herbal teas in the evenings; eating basically only what I cook myself (gluten/dairy free 90%+ of the time), being as stress free as possible, stretching daily and sort of meditating, while always paying close attention to my physical and mental status... Gets me by; although I must admit I'm quite a hermit and if it weren't for an incredible Mother, I'd be who knows where but definitely 'not well.'