The short version

[Carebear]

...of my life story.......

I remember napping as a child on my parents bed. I always thought it "haunted" though I'm not sure I believe in that 'stuff." I remember that upon awakening I could not open my eyes or move my body but that I was awake and aware that I was awake. So I thought some "ghost or unseen force" caused that to happen. It happened often as far as my mind recalls. Evidently happening often enough that I didn't think it was a big deal. Other times as I got older, I remember seeing "things" upon awakening and when I would talk about it I would say "I saw a ghost." BUT, I don't think I believe much in that kind of hoopla.

As I started in school I recall falling asleep under my desk during weather related drills and getting in trouble by some of my teachers. My bedtime was always before 9 pm and my parents say I was a good sleeper, could sleep through any noises. I've always felt "foggy brained" like I know I'm at least average smartness but sometimes can't remember if something really happened or was said or was it just a dream. I feel as if I don't notice much going on around me as I was always in a "zone" unless I was on my feet and extremely busy. And so I tried to keep myself as busy as possible because that was the only way I could keep from getting very tired and sleepy. As a teen I worked as many hours as I could as "teen jobs" would allow. My school work was rarely above C's in any class like Math, Social Studies, Science but I always made A's in English and grammer and even spelling I just could not stand to sit still and listen to a teacher give a lecture. My mind would wander all over without even realizing it. It was almost like I was asleep with my eyes open.

Fast forward to marriage, children, and working in a classroom setting. It became so hard to get up in the mornings, even though I went to bed before 6pm at night and fell asleep at red lights, doctor offices, on band trips with my kids, folding laundry, surfing the net, reading, watching tv, even cooking if I sat down for a minute. Yes, I burned lots of meals but thankfully nothing more. My husband was losing sleep because of my snoring, the housework was not getting done even though the rest of them tried to even with their busy schedules. Many times someone would return home to find me asleep with my head in the laundry basket full of clothes on my bed with maybe 2 towels folded. My kids were getting embarrassed when we would go on bus band trips and I would fall asleep immediately and snore like mad!
I tried so hard not to fall asleep but I was painfully sleepy. I could not sit and listen to them talking to me because I would fall asleep from the get-go. I couldn't pay bills or do anything that required me to be awake for. Yes, crazily, we all thought it was just funny, not realizing there were real sleep diseases out there. No matter how much I slept, even whole weekends anytime I could get by with it, I was still tortuously sleepy.
My job was suffering. I was unable to supervise students on my own and could be found sitting, eyes open, in la=la land. Surely they thought I was lazy or mentally challenged.
Sometime during all of this I started having back pain and many other problems that caused me to stop working and concentrate on getting my health back. I was also restricted from driving a couple of years ago due to my problems not being resolved with treatment. Of course there is much more to my story that would fill up too much room but I wanted to share this much for now in case anyone else has been through these type lifetime problems. I've been to Neurologist, Rheumatologist, Cardiologist, Psychiatrist (for Narcolepsy and the depression all of this causes) as well as Endocrinologist, Phsyiatrist, Chiropractors, LMT, and maybe some I have forgotten about. none of them think I am "crazy" and they all think the SA and Narcolepsy have caused my body and brain to be problematic and cause other health problems...hypertension, fms, arthritis, etc....
If you saw me in public now that I am on medications for awakeness you probably wouldn't think I had many, if any problems at all. I try to keep my "goofy sleepy faces" to a minimum and try to at least "act" like I know what is going on around me, even when I have been seemingly asleep with my eyes open. Some days I manage to be almost normal with just one nap a day, other times I stay home because I know I will need extra sleep and my machine close by. It has really changed my life and I want to feel normal (whatever that is).

[MaxDarkside]

Thank you. Very interesting.

[HoseCrusher]

Normal is what you make of it. Enjoy each nights sleep and know that you are on your way back to health.

[Otter]

I was also restricted from driving a couple of years ago due to my problems not being resolved with treatment.

Would that treatment be CPAP? People here may be able to help if you post more details.

[Carebear]

Otter, YES first and foremost I use my auto cpap, as I said in a previous post, my body is addicted to it and I don't know if I could sleep without it now even IF they were to say I did not need it anymore (which I doubt would ever come about.) But also they have tried several medications to help control the sleepiness and several different combinations of medications. Nuvigil was the first one I was on and it was the one I was on the longest. I ran out for a couple of days recently and found that my other medication (ADHD med) worked so much better without the Nuvigil most days. There are still many days that I am just sleepy and no matter what, end up taking at least 2 naps. I even use my machine during naps, I promise you-it is hard to fall asleep without it. When I try to sleep without it (as I had to do at the beginning of my last sleep study) I felt like every time I started to drift off to sleep my legs would feel an electric current run through them and I would jump awake. It's almost like I am being "zapped."
I kept telling the sleep tech that I needed my mask on and running before I would be able to really sleep. I had over 200 and something leg movements during that test. it's strange to be addicted to something that is not even close to comfortable. My doctor tells me that I am one of the rare people with this many sleep problems as extreme as they are. I was shocked the first time I heard my doc say that. I really had no clue. All I knew is that I needed more and more sleep every day and I was sleeping more than I was awake for a good while.

[Carebear]

I should have added this to my first post at the top.....
The reason the surgery was tried on me was in hopes of getting my apneas and cpap pressure down enough so that I could use Xyrem to help the daytime drowsiness. They say it is suppose to put a person into such a deep sleep that they feel most rested upon awakening. But I was not put on it because my sleep apnea is so extreme. Also I am not to take muscle relaxers, pain meds or anything else that makes us sleep deeper.

[Otter]

What is your sleep architecture like now, Carebear? Have you looked at your machine data, EEG from your studies, etc?

I understand what you mean about not being able to fall asleep without your mask. I do occasionally doze off before I get the mask on, but generally, there's no point in even trying to sleep without it. The reason you're addicted to it, I think, is that you're addicted to oxygen. Cure your oxygen dependency and you won't need the machine anymore.

[kteague]

I had over 200 and something leg movements during that test.

Quite an interesting lifelong history. At what point in life did they diagnose narcolepsy? Just curious, were your limb movements determined to be respiratory related, periodic limb movement disorder, or some other cause?

Hope things continue to improve for you.

Kathy

[Carebear]

I wasn't diagnosed with the Narcolepsy until 5-6 months after being on cpap. I've had 3 night sleep studies, and 1 daytime sleep study within the past 2 years. I don't know about my limb movements, my husband said I have always moved around a lot, I only noticed them when I was being tested without my cpap and could not stay asleep.

From what I understand the "weird" things I experienced over my life were caused from the Narcolepsy. I do believe what the doctor told me when she said I have probably had it most of my life. The sleep apnea, she said, has probably been going on since I was a teen. I am now in my early 40's.

[kteague]

Keeping in mind that my personal experience tends to make me hone in on leg movements, so with that said, I would suggest that you find out exactly the role limb movements play (or don't play) in your sleep by getting a copy of your sleep study, being observed, and/or video recording your sleep?

[Mary Z]

Thank you for your post. Are you being treated for the narcolepsy? It sure does sound like narcolepsy (have a cousin with narcolepsy) in addition to OSA. If you are being treated, perhaps the meds are not strong enough. My cousin needed desoxyn. Provigil and Nuvigil were not available when he was diagnosed, but I cannot believe they would be effective for full blown narcolepsy.
Also I have continued to have problems with daytime sleepiness in spite of CPAP therapy (could never get AHI under 5) and have been changed to an ASV machine. Perhaps that may be an answer for you, too.

Good luck.

[Carebear]

I do think the narcolepsy is causing the bigger of the two problems right now with my drowsiness. My apneas are usually below 2, anywhere from like...0.4 to 1.4 or around those numbers. I do take Adderall and it helps some. We have tried several medication combinations but recently I ran out of Nuvigil and found that I feel much less brain-dead without taking them. In other words they were adding TO the brain fog, tiredness etc....I was on them over two years before making that discovery.