Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
Hi my name is Ellen. I am 33 years old and new here. I have a few questions about symptoms of Narcolepsy and your own personal experiences with it. Is Narcolepsy something that comes and goes? Can it happen to you for a few months and then not at all for another few months or more? Also, I have sleep paralysis more than any other part of this condition. Does that mean maybe I have a different sleep disorder? How may of you are plagued with sleep paralysis? And I don't like to take anything that wakes me up, like coffee, because of anxiety and jitterness. Is there something else that can be prescribed to me other than a stimulant. Especially since it's not something I deal with every day. I have a combination of sleep disorders where I can have trouble sleeping, waking up constantly, violent nightmares(sometimes acted out by thrashing around), talking in my sleep and so on. Is it possible to have Narcolepsy and other sleep disorders too? I would appreciate any advise or others shared experiences. Thank you, Ellen
It is definitely possible to have more than one sleeping disorder. I, like many here, have both apnea and Narcolepsy (among other things).
Perhaps instead of trying to wake up with stimulants you could try something to help you sleep through the night with hope that you wake up more refreshed. I have heard that melatonin, a natural remedy, is very good at helping with that. I have taken Rozerem but for me personally it's not the best choice. I am on provigil and couldn't be more pleased with the results. Unlike Ritalin, I do not usually get jittery, nor does it drop me like Ritalin did.
So you think you might have Narcolepsy? Do you have cataplexy- thats a pretty sure sign. Automatic behavior (do you lose time)? Just curious to compare symptoms ;) I hope you do not have it, but either way, you're among good company here and welcome to our group!
I've experienced SP (sleep paralysis) for as long back as I can remember. It's definitely a symptom of narcolepsy. It took me 30 years to get the correct diagnosis - that I had narcolepsy. And throughout those years, my narcolepsy symptoms came and went. I could go long periods of time where I don't remember experiencing EDS (excessive daytime sleepiness). Then 'wham,' it would hit me like a freight train had run me over. When I tried get answers, I ended up seeing a psychiatrist who insisted my tiredness, my sleepiness, were symptoms of depression. I fought with him (and many of the ensuing doctors) that I really didn't think I was depressed, just extremely, utterly tired.
As for SP, since I've had it since a kid, I simply assumed that everyone had that and dismissed it from my mind as a problem. Sometimes I found it irritating because I would really want to get out of bed and get on with my day.
I know I certainly talk in my sleep because I have awakened myself because of it. When I was married, my husband told me I talked in my sleep.
Many of us have Hypnogogic Hallucinations (which would happen upon falling asleep) and/or hypnopompic Hallucinations that happen upon waking up. They amount to the same thing. One might think they were night terrors, as for most of us they are frightening, almost terrifying, and it feels like we're awake and truly experiencing whatever the hallucination is. We try to call out for help, but find we cannot, or what does come out of our mouths makes no sense.
I can distinguish my HH from just having a horrible dream because the dreams quickly fade, while the hallucinations felt so real that I can recall almost every one of them, just as if the event really happened. All part of narcolepsy.
Now, if you have cataplexy, as in laughter or a strong emotion has you collapsing in a heap, unable to move, looking to all the world like you're unconscious, but you are wide awake, merely paralyzed and trapped within your body. It can last for a few seconds, a few minutes, or for a long time. In the beginning, my cataplexy attacks lasted just a few minutes. But over the years, I have developed status cataplecticus, meaning they last over an hour.
There are also mild cataplexy attacks that may only appear as times where you appeared clumsy or your jaw slackens, and if you talk, your speech can come out slurred. Those kind of C attacks have happened to me only when I was reprimanding one of my boys, and the emotion of being so angry at whichever one it was that made me angry, I would have to immediately stop yelling, and kind of retreat to get back full use of my mouth and jaw. I'm sure many of us here have experienced cataplexy in a variety of ways.
I remember waiting in my psychologist's office, and waiting and waiting. There was no place to sign in, you simply waited for the doctor to open and door and tell you it's your turn. I found myself being very frustrated which the longer I waited, I became angry. I went next door to where I know his clerical staff was, and asked why on earth was I waiting so long. Turned out my doctor forgot to write me down in his appt book.
He came right out and apologized profusely and as we walked back to his office together, my knees buckled and I momentarily felt like I was going to collapse (this was before my diagnosis). My doctor asked me what had happened in that moment, and I told him I hadn't a clue.
Narcolepsy encompasses a lot of different symptoms. Some people merely (and I'm not making light of it), the extreme sleepiness. Others, like myself, have every single symptom. Though my full collapse, paralysis lasting a measurable amount of time did not occur until I was 45. Until then the attacks were much milder.
Many of us have other sleep disorders as well. I have restless leg syndrome; my son who has narcolepsy has restless leg syndrome and sleep apnea. I have had a lot of automatic behavior, where I do something, converse with someone, etc, and I have no recollection of any of that at all.
I've actually told some people (in certain instances) that I may not recall having any interaction with them at any given time. Or I start talking about a subject and stop mid sentence and have no recollection that I had just been talking. It's as if my brain goes to sleep during these times, however my body didn't get the message and is just going on 'automatic,'
Everyone experiences automatic behavior at one or another. Like leaving work and pulling into your driveway and realizing you don't remember the drive home. But our level of automatic behavior has been kicked up several notches.
Have you been formally diagnosed with Narcolepsy or are you suspecting you have narcolepsy. Have you gone through the all night polysomnogram and the next day have what we call MSLT, a test where you take a series of 20 min. naps, with 2 hours of staying awake between naps. That was sheer hell to me. Every part of my body wanted to sleep during the 2 hours I had to remain awake.
Well, I've rambled on quite enough. A habit a lot of us pwn's (person with narcolepsy) seem to do a lot.
Narcolepsy is very complex. As we get older it can become seriously debilitating and many of us have to go on disability.
However, with your personal history, it's entirely possible you have PTSD as well. My personal history is similar to yours, and it has brought my narcolepsy to another level. If you have not been treated for the abuse, etc. you've experienced, you may want to meet with a therapist who deals with Post Traumatic Stress Disorder patients. There are treatments to deal with that
Also, I'm going to throw this in there - so many times people have made comments where I know they assume that we sleep almost 24/7. When in fact, we may or may not fall asleep quickly, but many of us have disrupted nighttime periods all through the night. Sometimes we are unaware and our spouse may be aware of it whereas you aren't.
I see you are 33. I look back to when I was 29 through maybe 35, and none of my symptoms were so obvious that I gave it much thought. Then, as if someone turned on a switch, the narcolepsy was back and here to stay, and got worse each year. If I got sick, such as when I had pneumonia, major surgeries, that seemed to intensify my symptoms, and they moved in for time and all eternity.
I've had narcolepsy longer than most of you have been alive. It has steadily progressed (and they say it's not progressive - hah!) to a point now where I have difficulty functioning. Narcolepsy has taken a big chunk of my life from me, but I came to know that I must accept what is, and work within those parameters. I have very little energy to do so many of the things that used to be a big part of me.
So I choose my battles wisely and do what I can to the best of my ability at this time in my life. My house is no longer 'spic and span', I don't bother with make up anymore, and let me tell you, the younger me wouldn't have left the house without make up on and my hair just right. Now, I've found a hairstyle I like but is easy to care for.
I am not able to participate in so many of t he things I used to do, but I've found things I can do, and have made peace with that. Narcolepsy can make mincemeat of your memory and cognitive ability, and as frustrating as that is, I've had to adapt.
Well, I've rambled even more than usual. I've probably put you to sleep. Hang in there. Check out the web site of the Narcolepsy Network. They play an important role of keeping us up to date on the latest research, ways to cope, and offer help and hope to all of us
In a week they will hold their annual conference. It is held in a different part of the country each year to give all pwn's an opportunity to take part. I see you're in CA, and just 2 years ago the conference was in San Diego. I'm told it will not be held in the West for at least another couple years. I always encourage people to attend, if they can afford it (there are scholarships to help defray costs but it's too late for this conference). They have wonderful talks, and workshops but the most important part is spending a weekend with other narcoleptics who fully accept you and what you are going through, and many lifelong friendships are born there.
Andrea
What do you mean by taking 5 hour shots every day?
Looking back, I have to wonder about my periodic bouts of 'the need to sleep'. Again, it was never anything that interfered with daily living, but did give me a sense of being a little on the lazy side. I can now see though, looking back, that over time the need to sleep became a little bit more 'there', but I always had an excuse.... college, new baby, new job, another baby, moving a lot, buying a new house..... on and on until about age 31. Like Arizona, the EDS hit me like a freight train and brought life to a screeching halt. One night, driving home from a relative's house, I put bruises on my thighs because I kept slapping them to stay awake. It effected work. It effected my home life. I would spend all my time off sleeping, wanting to sleep, or walking around in a haze. I literally couldn't keep my eyes straight, and when it was really bad, I caught myself slurring when I talked. I stopped driving except for the 10 minute drive to work, and there were a few times a friend drove me home. I could go on, but suffice it to say the need to sleep interfered in everything!
After over two years of limbo, a million-dollar workup and even a trial of synthroid as my TSH and T4 ran on the low side, I finally saw a neurologist, had the sleep study, tried ever increasing amounts of provigil, and now take 400mg of nuvigil daily and melatonin before bedtime. I am almost back to normal!
I also keep a strict sleep schedule.... actually, I have to schedule everything or I'll procrastinate on and on. I try to keep life as simple as possible- read the 'spoon theory'- it's a good example. Decide which spoons are important, and go from there. A simple life leads to less stress, and less stress leads to fewer triggers - no matter what your diagnosis is. Fewer triggers results in a decrease of disease process exacerbations- which in turns leads to less stress and helps stop the vicious cycle.
Interestingly enough, though everything else has drastically improved, the sleep paralysis has suddenly become a major annoyance. I recently had it for almost an entire night... it drove me insane!
As for other sleep disorders, there is REM Behavior Disorder, it's like the opposite of sleep paralysis. When a person dreams, they should have atonia, ie paralysis, to prevent the acting out of dreams. In REM BD, there is no atonia during REM, so all the interesting things like sleep walking and talking occur. I only mention this because if you have nightmares as a result of PTSD, antidepressants can make it worse, according to my limited research.
Personally, I feel that N , being a sleep disorder that is halmarked by a lot of REM dysfuncion- would automatically disclude a diagnosis of REM BD as any REM disturbance would be a result of the narcolepsy. On the other hand, I can see how being chronically sleep deprived BECAUSE of REM BD could manifest as EDS and lead to an inappropriate diagnosis of N. How to tell the difference, once a person has reached the sleepy all the time stage-- I guess a good neuro with a sleep/psycology background would be the best bet. Although, I suppose sleep paralysis would rule out REM BD.
I think too much, lol.
Oh, and 5hr energy shots taste quite nasty, but they work! And no yucky jittery feeling or racing heartrate. If you have never tried one, it may make you feel flushed for a time afterwards, because of the niacin. Get the original 5hr in the orange bottle--- the other versions or other brands (like 6hr energy, or anything with 'extreme' on the bottle) have guarana or extra caffeine and it will make you feel worse, IMO.
Welcome to the board! I'm so thankful for this board, because it is near impossible to find information for any sleep disorder online except insomnia and apnea. Let alone personal stories.