Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"
Showing posts with label narcolepsy. Show all posts
Showing posts with label narcolepsy. Show all posts

Wednesday, June 08, 2011

Hypnopompic and Hypnagogic Hallucinations

Hypnagogic imagery (-hallucinations) - Vivid sensory images occurring at sleep onset but particularly vivid with sleep-onset REM periods;�feature of narcoleptic REM naps.

You've probably done this at some dome during you're life. You're just about to fall asleep (but not quite "there") and you get a flash of a dream, either with or without sounds. But it's just a flash. You might hear a voice (often I get a voice that yells my name) or someone screaming, or a dog bark or something like that.  It might bring you bake to "awake" or you might keep going into real sleep.

These are called Hymnagogic hallucinations. I had forgotten there was a name for it. In the first two naps today I've had them. On the sleep study monitors it will show that I'm in stage 4 (REM) sleep, but I'm very much aware of what is going on, and feel like I'm kind of still awake. You might term this "just drifting off".  That's because only PART of my brain has gone to sleep, and another part is still trying to get there. (In re-reading this last sentence, it sounds an awful lot like I'm describing something else! But that's another post...ok an entirely different blog. One not written by me! LOL)

Hypnopompic hallucinations are just the opposite, happening as a person is waking up. This is when episodes of sleep paralysis happen, which can be really scary. Thankfully I haven't had an episode in years, at least not that I can remember.

Most people only have these episodes once in awhile. I have them every time I fall asleep. They're kind of annoying, really. Sometimes I think there is someone in the room with me. Sometimes it feels dangerous. Did you know there are people who are able to manipulate these sensations into lucid dreams, and actually control their dream state with them? Freaky!

Ok, two naps down, three more to go. The tech did say that based on my first two naps I will probably be here for all five. (Honey, that means I won't be home until around 9:00 tonight. Just in time for bed. LOL) Eventually I'll be done with this test and can get on to posting about other things. YAY!

What is Narcolepsy?

I guess I didn't snore as much as I do at home, because they never came in to make me put on the c-pap mask. I know I was awake a lot because I woke up every time I rolled over. Normally at home I close my eyes for the night, then the next thing I know it's morning and I'm still exhausted! Very symptomatic of two things: Sleep apnea and Narcolepsy.

Now for the naps! Because I have known narcolepsy, diagnosed during a similar test 12 years ago, I have to do a nap test. This is a series of five scheduled naps, taken every two hours, each one lasting half an hour.

Narcolepsy is a problem with the brains ability to regulate sleep cycles. It's common for people with Narcolepsy to skip sleep cycles, and also to have symptoms of Cataplexy and Sleep Paralysis. I've never had Cataplexy, but sleep paralysis is something that I had for years. (it's been several years since I've had  sleep paralysis.) Sleep Paralysis is VERY scary, and would cause me to be afraid to go back to sleep because you feel like you can't breath.

So my overnight study is done, and now it's time for the nap test.

The purpose of the nap test is to check your level of daytime sleepiness. So you wake up for the morning (I fell asleep around 10:30 last night and didn't wake up until 10:00 this morning!) and fill out a questionnaire about how you slept the night before (which they use to compare with the actual information gathered by all the wires and monitors you're hooked up to.) Then two hours later you take your first nap of the day. Most people, those not having sleep disorders like apnea or narcolepsy, will not sleep during this nap. *Some* might reach stage 1 or 2 of sleep, and it will probably take them 20 or so minutes to get there. Sorry though...the nap is only 30 minutes long. LOL You will take five of these naps, spaced two hours apart over the course of the day.

Then there is me. During my last sleep study 12 years ago, not only did I fall asleep within two minutes for EVERY nap, but I skipped stages 2-4 going from stage 1 (which is light sleep) to stage 5 (deep sleep) and stayed there until I was woken up 30 minutes later.  I did that for ALL FIVE naps, and then was also dozing off between naps.

I don't think my narcolepsy is as bad now as it was 12 years ago. I did sleep a little during this first nap, but it's different sleep. I have a dream state when I'm not yet in stage 4 or 5 where dreaming normally occurs. It is very strange, unless you have narcolepsy. ;-)

So I feel like I just woke up and am groggy, but I see that according to the clock, it will be nap time again in 40 minutes. Thats the thing with Narcolepsy. If you are sitting around with nothing to do, you get groggy. Getting up and being active helps, but the narcolepsy makes you have very low energy levels too. People with narcolepsy often do thing like "eat out of boredom" when what they're really doing is trying to stay awake. Needless to say, weight gain is a problem. People with Narcolepsy are often looked up as being lazy, or having no ambition. That's because sometimes it's all we can do to stay awake, much less get anything done. We can get our days and nights turned around VERY easily, and many people with Narcolepsy find they do better with overnight jobs than daytime jobs.

When I was first diagnosed 12 years ago, I was given Ritalin to help me stay awake. I hated the Ritalin, as it gave me HORRID headaches. (but very different from my migraines, which are also awful.) My doctor told me to stick with it just a little bit, because a new drug was coming out called Provigil. It was incredibly expensive when it came out and it took about a year on the market before my insurance would cover it.

The first time I took Provigil, it was like someone gave me speed. After three days I had gotten more done around the house than I had in 3 months. I'd also lost five lbs! What I was feeling is what you normal people feel. I was awake. At age 30, for the first time since I was around 15 years old, I knew what it felt like to be awake.

I took Provigil off and on for a few years. As my jobs changed so did my health insurance and sometimes it wasn't covered. Then I was without insurance for awhile, and my doctor said in order to continue getting my Provigil refilled I had to have a new sleep study done. That was about 4 years ago and I haven't had Provigil since.

And I'm sleepy. I'm sleepy driving, and any drive longer than 15 minutes poses a problem for me. Sitting in a waiting room is HORRIBLE, because I really struggle to stay awake. If I'm in a sleepy phase and I suddenly have to talk to someone on the phone or in person, they might notice my speech is slurred.

Last night when I was getting wired up, the tech was asking if I take any meds for my narcolepsy (you have to be off all sleep meds for the test) When I said I hadn't taken any in four or five years she told me that there are two new meds out that are even better than Provigil was, because they actually replace the chemical in the brain that is deficient. It sounds heavenly.

Being awake sounds  heavenly. Maybe I'd feel like exercising again.

But what about the sleep apnea? Unfortunately, I don't think this sleep study did what Dean hoped it would do, which is get me on a machine to stop my very loud and annoying snoring. Sorry Dean. :-(  My goal in getting this study done was just plain find out why I'm so flipping tired all the time. Yes, I have narcolepsy, but it had seemed a little better the past year or so, making me thing this problem was actually apnea related.

The tech informed me last night that narcolepsy does that. Seems "better" for a year or so, then gets suddenly worse.


I just want to be awake. I'll meet with the doctor tomorrow to find out what I can do to make that happen.

Tuesday, June 07, 2011

Where's Wal..I mean Leah?

Where am I now? Does this picture give you a good clue?

Yep, having a sleep study done. The last time I did one was about 12 years ago when I was diagnosed with Narcolepsy. But a few months ago, someone....ahem...started complaining that I'm snoring a lot. Maybe even enough for sleep on the couch occasionally. Between that, and the fact I'm even MORE sleepy than I normally am (which is a LOT thanks to Narcolepsy!) it was time to get restudied. 

I just finished trying out the different masks. OMG...the full mask makes me incredibly claustrophobic! Like I feel like I have to take a deep breath then put it on because I'm going underwater. It's horrible. The tech adjusted the settings a bit and it was a little better. I also tried two different nasal masks, and I liked one better than the other, and also better than the face mask. Still claustrophobic, but not as bad as with the face mask. We won't know if I need one of those until I have a certain number and type of apnea episodes, which there's a chance I may not, right? (I kinda doubt it!)

So here I am. Having a sleep study. Yay me!

Thursday, December 13, 2007

Narcoleptic Insomniac

Is there really such a thing as a Narcoleptic Insomniac? Yes, there most certainly is. I personally know someone who suffers from this condition. How does this happen? Let me tell you a story.....

Since sometime around 15 or 16 I've had a horrible time staying awake. Lots of teenagers are like that though, so I'm sure my parents didn't think much of it. I can remember coming home from school and taking loooooooooooong naps. I think most teenagers do. But there were times when I was also a really busy kid, with track meets and chior concerts, and all that stuff.

Before I knew it, I was a young mom. Aren't all moms of 2 toddlers really tired all the time? I loved when the babies were still on 2 naps a day, because it meant I could take one too! I was lucky that both my boys were nappers!

By the time I was in my mid 20's I was discovering that driving was a bit difficult. Well, the driving wasn't, but staying awake while I was driving sure was tough! Along came Angela. By then there were 5 kids in the house and I was exhausted all the time. Who wouldn't be? But I certainly wasn't short on sleep. I was getting 8-10 hours a night and would wake up in the morning thinking, "If I can just make it till 10:00 a.m., I can take a nap with Angela." Waking up planning your naps isn't a good sign.

When Angela was around 2 or so, my friend Joanie said to me, "You sleep more than anyone I know. I don't think it's normal. Did you know that most adults don't take a 3 or 4 hour nap every day?" (well, I knew they didn't, but I thought they probably WANTED to!) She told me there was going to be a special on 20/20 about sleep disorders, so I watched it. It mostly talked about the truckers that spend too many consecutive hours driving and the results of it, but it also talked about sleep studies, and narcolepsy. I could identify with a lot of the stories. By that time in my life driving more than 10 minutes at a time was very difficult. Angela needed lots of trips to the children's hospital which was 70 miles one way, and I'd often have to pull over 2 or 3 times so I could close my eyes. The story gave a website address of the National Sleep Foundation where you could take a screening test to find out if you should see a sleep specialist.

I took that test, and up popped a warning box, "You should not be operating a motorized vehicle. You need to be sleep by a sleep specialist as soon as possible." Wow...hmmm...ok. So I went to a specialist, had a sleep study, and was diagnosed with Narcolepsy. (a year later my then 15 year old was diagnosed as well.) There is medication you can take for Narcolepsy, but it's extremely expensive and I don't currently have health insurance so I've been off it for quite some time. But it's very strange. Even when I have the medication I don't really want to take it, because like most of us who have Narcolepsy, we LOVE sleep. Also, the medication causes migraines. If I catch them soon enough I can stop them before they render me incapeable of opening my eyes in the daylight, but I'm not always able to catch it.

Most people who have Narcolepsy will tell you people think they are lazy. It's tough to get things done when you really just want to sleep. You have ZERO ambition. BUT...when you take the medication it's like taking speed and you can whip around getting the most amazing amount of stuff done. I often forget just how awake I can be if I'd just take a pill. But it's not an abnormal amount of awakeness (is that a word?) It's a NORMAL amount. Like what everyone around me probably feels like and so I'm shocked at how much they can get done in a day. People with narcolepsy also have trouble with weight gain, because for us, eating out of boredom is also a way to stay awake.

So where does insomnia play in here?

Well...I'm at a lovely age. I'm 40, and have had a hysterectomy which means I'm hitting the peri-menopausal stage a little early. Sorry if this is TMI, but it's crucial to my story. Part of this stage is insomnia.

GOOD GRIEF! I'm so tired of being awake in the middle of the night! This is silly! I can't really get anything done or I'll wake up the whole house. Take tonight for instance. I went to bed at 10:00 like a normal person. Having narcolepsy means I fall asleep within seconds of my head hitting the pillow. But at 11:30 the dogs started barking at something outside (damn deer!) I went back to bed but I knew it was hopeless. I layed there wondering if I could pull the tree out of the storage room, get it up and decorated without waking anyone. Then I remembered the puppy in the basement and knew that idea was out. She'd be barking her head off. So I did my usual and went to the computer to find something interesting to read. It's now 2:00 a.m. and here I still sit. Not even the slightest bit sleepy. I could be decorating a tree, or painting the kitchen, or something else productive, but all I can think about is how tired I'm going to be tomorrow!

Angela is staying home from school since she's not feeling well, and I have a dr. appointment to get to. The lack of sleep is catching up with me and I know I'm going to have a hard time driving, much less getting anything else done. I've gotten to the point that if I have even ONE appointment during the day I feel like I've run a marathon and could sleep for days. It's very frustrating. Not only for me, but for Dean.

So...that's how a narcoleptic insomniac comes to be. Now, I'm going to try going back to bed and see what happens! Goodnight!