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July 31, 2004

Getting to know me

Hello to you. I am Lis, 33 years old, divorced mother of three and a patient with narcolepsy. It wasn't always this way though. I remember when I was Lis, mother of one, then mother of two, grueling my way through college, then boom! Married too. Narcolepsy didn't seem to be much of an issue for me during this time. I guess by the time child number three came at 24, my little brain decided it was time to just begin to show it's peculiar behavior. Even so, I continued on for another three years, during which time, life as I knew it began to subtly change. I was 27 by the time there was even a hint of an answer as to what it was that was really taking place; for I found myself surprised time and again as I sought treatment for these dreadful symptoms during this three year period and had more than one lovely physician suggest that I must be depressed after all, though I personally never experienced depression up through this point. When Narcolepsy struck, it was during the prime of my life...the most content and stable time for me. I had two beautiful daughters, a surprise son on the way, and a fairly new career as a nurse along with a husband who was..well...just there, as I sit here and reflect on this...LOL.

What is Narcolepsy? It is one of many sleep disorders....a disease that is neurological in origin; for it's problem occurs in the brain. Though there are many theories, and even some promising answers through research, the true cause of this brain malfunction is unknown. In my opinion, it's cause may be variable and I am inclined to believe there is more than one factor at play for one to develop Narcolepsy, but I'll leave that aside for now. To help you understand Narcolepsy....if that's even possible, let's talk about the normal sleeping pattern of a person.

Normal sleep can be divided into stages. When a person first falls asleep, they normally enter a period that is light sleep, otherwise known as Stage 1 of the normal sleep pattern. This sleep progesses all the way to stage 4, as you fall asleep deeper and deeper. Stage 4 is a deep delta wave sleep, and also the most restful portion of sleep one can get; therefore the most crucial. These first 4 stages of sleep are also called NREM sleep. (non rapid-eye movement sleep) In the average person, it usually takes about 90 minutes or so to complete all four stages of this NREM sleep. What happens next is the brain enters into REM sleep...which is the level of sleep during which you dream. It is known as rapid eye movemet sleep, because that's just what your eyes are doing during this level of sleep. This REM sleep always follows the NREM sleep (stages 1-4 sleep) and usually occurs around 4-5 times during a normal 8-9 hour sleep period. The first of these 4 to 5 periods of REM sleep that occurs, may last less than 10 minutes or so, and the last REM period may last 60 minutes or longer...and as you begin to wake from REM sleep, your brain takes you back through the NREM stages to wakefulness....and the pattern repeats itself. This lovely little built in sleep center is all located and operated within your brain. Whew! With that all done, lets look at Narcolepsy.

Here is a picture of what my life was like up through the time of being diagnosed and even after:

Here it is, the middle of the day, and I'm wondering why I keep "blacking out" randomly for minutes at a time...and sometimes longer. I thought to myself, "maybe I need more sleep", so I started going to bed earlier to give myself a good 8 hour sleep instead of my normal 6 hour sleep that I was used to. I woke up feeling as if I hadn't slept in years, and after physically pushing myself to get up and get moving for the next hour or two, I found I couldn't, and took myself down for a nap. "What is wrong with me?", I thought. By the time I woke once again, two hours had passed. I swore it was only about a half hour, if even that. "Vitamins....I must need vitamins...this is terrible!..I can't even see straight, let alone think straight!" Well, as you can imagine, I began my quest for every natural alternative under the sun, yet nothing. Instead it seemed, I got worse. My naps turned into 3 hours, and I could not wake up all the way between them. Everything blended together around me. I felt like I was living in a kaleidoscope. I couldn't see right, I couldn't think right, I couldn't process what was being said to and around me at times, my memory was fading fast. I felt like I had been awake for 7 days straight with not one wink of sleep inbetween!... "How can this be?....I've tried everything under the sun....a strict good full sleep schedule, naps, vitamins.....omg!...what if I have some kind of cancer? I've seen plenty of cancer patients, and I've seen how they look....even how they feel....and now I understand what I've seen!". My poor doc ordered so much testing and blood work. I held my breath. Nothing. Everything was normal. He asked me once again if I was certain I wasn't depressed. I was more surprised than angry at first, because if I were, I would have at least felt a little better about the symptoms I was experiencing. He was one of a few who took my word for it, and the only other thing he could think of as far as testing goes, was to try a sleep study with MSLT. So glad he listened, because it was that very test that was needed most. I loved to laugh, do things, always on the go. I often overscheduled myself, but somehow always came through. I was very involved with my kids and kept them very involved in various activities as well...always involving others. It was hectic but fun. Now, I couldn't see straight enough to walk, let alone drive...so there went that. I still found ways to adapt. I had tons of kids come to my home instead. I tutored some when I could, helped my kids with their work as much as I could...and it only became more difficult. I'd either fall asleep mid-instruction, or not be able to think with enough clarity to explain things without drawing huge blanks and getting frustrated. It was all so wierd. I went from cooking full course meals, to desperately trying to physically make it through cooking just a 3 minute microwavable meal per child. This happened gradually. The harder I pushed, the more I strived, the worse I still became. This was so new for me. It took every ounce of effort I had to even throw in a load of laundry, and I was an avid washer of just about everything. Many times, I couldn't remember if I even threw in a load or not, and would end up either having to rewash, or stand there confused because I didn't know how the wash ended up in the machine, because I KNOW I didn't do it...I had no memory of it. You should have seen me trying to fold a load of clothes. Without even knowing it, I would fold a wash rag, pick it up again, refold it....do it again...and so on, and finally "come to", somewhat enough to think....wow...how long have I been sitting here in front of this basket?....I don't even remember folding this rag...LOL. I still would have no idea exactly what was happening during these times if I didn't finally have another adult staying with me during them to witness it. My husband during these earlier times was not there. He never was. In the beginning, before Narcolepsy became a problem for me, it didn't bother me much, because I was just as busy....but now, for the first time in my life...I found myself needing more and more help with just about everything....and he refused to give it. He had no idea what was wrong..and neither did I. He became very angry with what he was seeing the very few times he actually was home, even after I received my diagnosis. I was left often, so confused by his anger. I used to think...."Is he trying to pick fights with me or something? ...is he this unhappy with our marriage?......if he doesn't want to be married, why doesn't he just say it, rather than accuse me of these crazy things that I have no idea what he's talking about!" Apparently, we were having conversations I had no memory of...therefore were not followed through with, which is one of the many things that angered him. I was also remembering conversations we had and acting upon them...(dumb ones, like my husband asking me to pick certain items up from the store, etc)....only to be left confused by his anger toward me when I followed through with them. (I would bring back things that he never asked for, (and have clear memories of him asking for them) or bring back things that he had already asked for and recieved three times over from me in which I had no prior memory of, etc.. This same problem was invading into my ability to make and keep appoinments, dates, coordinate school/activites, accomplish various tasks, etc) Later on, after much heartache, and my own desparate research on narcolepsy, I realized what had been happening throughout all of those horrible times....Those memories I had of conversations that occured between us were not memories...but dreams.....dreams that invaded into my reality, making my life miserable, because they were just that real to me....and therefore leaving me most of the time, utterly confused. I would respond to these "dreams" more than I did to actual conversations that really did take place. Scary thing to remember dreams clearer than actual events. This is what it was like to experience narcolepsy...almost to it's fullest. Once cataplexy developed in addition to all of this, I thought my life was over indeed.

Here is what happens in the brain as far as sleep and it's stages are concerned in one who has narcolepsy:

Remember when I explained above, a normal person will enter into stage 1-4 NREM sleep over a period of about 90 minutes or so, before entering REM or dream stage of sleep. Then they will flow backwards from REM and into NREM sleep once again and repeat the flow throughout the night as they periodically enter small periods of REM or dreamsleep.

This is how my narcoleptic brain worked, according to my diagnostic study:

I layed down for some scheduled naps...even entered into a stage one light sleep at times...then after about one minute or so and at some points a few more or even less, (instead of the normal 90 minutes it should take) I some how ended up in that REM or dreamstage sleep full force. It's like my brain pushed a skip button when it came to trudging through each stage nicely before entering REM, even skipping that most restorative time of sleep...stage 4 deep delta wave sleep. The result of all of this? I was essentially sleep deprived (of the normal pattern of restful sleep). Though I was always falling asleep, I was not experiencing a true sleep. Confusing, isn't it. I could live in REM forever, I guess, hehe. I was always told I was a dreamer...and boy....little did anyone know...that's exactly the case.

In Narcolepsy, this invasion of REM sleep can occur randomly and suddenly throughout each day and night. One minute I'm awake and talking...the next minute I'm not...well I shouldn't say that...because a big problem we narcoleptics have to deal with at times, is being both somewhat awake and asleep (in REM /dreamstage) at the same time. During these times, we may be walking...even talking....maybe making no sense...maybe making a lot of sense...but God knows, we probably won't remember either way, because we aren't really awake, though some part of us is enough to help us move and talk. It's like...sleep living or sleep walking off and on throughout the daytime...and maybe sometime later...a day?...an hour?...a week?...who knows!....A little piece of memory may come forth of what you might have been doing during that time...but that little piece may be confusing...or dream like...or even part of a dream itself...because that's what's happening during those times...you are dreaming and on some level, somewhat awake at the same time....and often left confused as a result...and those around you are left just as confused as you are. The actions you perform during these times are given a name in Narcolepsy. They are called "automatic behaviors". You are physically behaving in a certain manner that is variable among us narcoleptics, but you are behaving automatically...with no concious awareness during the time you are experiencing it....and oftentimes no exact memory- if any at all of what behaviors you were doing, after the fact. It's all so strange...and scary. No wonder my husband thought I was going nuts!....but then again, even without him having Narcolepsy, I believe him to be a more fit definition of the word "insanity" than any of us, hehe. It's really not so funny though. It affected everything and everyone around me. I was no longer me, but some stranger, unable to think, remember, or make sense of much. My kids were so confused, angry and hurt....just like I was. They didn't understand...and for the longest time, neither did I. Even upon being diagnosed, I wish doctors would have understood this enough themselves to at least warn me of what maybe to expect as far as Narcolepsy and progression of symptoms go. Sad to say, they didn't. Even now, I wish they would learn to change how they question a patient when it comes to trying to find out which symptoms of narcolepsy are being experienced, since the symptoms can be so variable from patient to patient. Not every narcoleptic experiences cataplexy. Not every narcoleptic experiences frequent automatic behaviors. Not every narcoleptic experiences hallucinations. (These are specific types of hallucinations that can occur upon waking but being in a REM sleep at the same time, or falling into a REM sleep and still experiencing some level of wakefulness at the same time....the hallucinations are actually dreams...direct result of REM/dream stage sleep....and can appear to be something quite normal and realistic....such as those conversations I used to remember but never really happened...or they can be quite abnormal and downright scary....such as the times I would look down at my hands and physically see that they were be blown up, disproportianate, crooked, with claw like or monstrous fingers...I would touch them with my other deformed hand, and it wouldn't feel human like...rather it felt spongy and rubbery..and icy....dead...oh dear....I would be freaked out. Some patients experience scarier ones...lurkers, monsters, hear strange things....feel strange things...such as ants crawling all over them...and it's so real, you want to scream....but instead, at some point, you may wake all the way from REM sleep enough to realize it's not real after all..because the bugs are gone, your hands are back to normal, everything looks normal once again and so on....BUT.. the clear memory and clarity of it all is still there and makes you shiver. Not every narcoleptic experiences sleep paralysis, which is also scary. You know your waking up....you go to move or turn over to get out of bed, but you cant. You try with all your might to lift an arm, but it's dead weighted down....feels like there's lead balls attached to it....then you might begin to panic....and try to move with all your might, only to feel like your being crushed down into your mattress with an unseen weight that is almost suffocating. That's what sleep paralyisis is like...you try to open your mouth to call out for help..but it won't open..if you're lucky, you might get a groan or so out...but until this nasty thing passes, there is nothing much you can do but wait it out. Not every narcoleptic will experience every symptom of narcolepsy...but many will at one time or another...whether it be frequently or not. Mine started out with just tiny "blackouts" or lapses of time that maybe lasted a minute or a few. They came few and far between.....looking back, probably from the time I was about 14 or so. This happened over the years and so far apart, that not much thought was given to them in between. Later this progressed to this incredible sleepiness that could not be relieved by anything. I had no idea the two were related. I progressed from there to bigger memory lapses during which (unknown to me) automatic behavior took presadence, and from there to sleep paralysis.....and last but not least to the development of cataplexy which turned severe due to it being missed by non-questioning doctors and therefore not diagnosed over the two years it was developing and becoming more severe. I believe cataplexy is the worst nightmare symptom of them all; for it is visibly the most humiliating to experience before others. All of these things are part of narcolepsy....all stem from the same faulty mechanism of sleep in the brain...all are caused by disruption of normal sleep stages in relation to abnormal invasions of REM sleep and it's timings. I will stop here for now. If you are interested more in learning about cataplexy, I will expand further....but for now, I'm wiped out and need to rest once again.

Posted by Lis at 11:55 PM | Comments (2)