Hey everyone.. I've been reading these boards for awhile and this is my first post. Any advice or opinions are much appreciated!
A little background..
I'm a 24 year old female currently in my last semester of school and graduation with my Associates in Nursing is just a few weeks away, thank god! I've been an LPN for two years in addition to that. I guess the medical background is an advantage because I'm always looking for literature, studies, data in regards to my narcolepsy and the best ways to manage it. I don't have cataplexy or the typical narcolepsy thought of with episodes of sudden loss of conciousness. I'm just excessively tired always, every day, with a few other quirky symptoms.
I was diagnosed about 4 years ago after 2/4 abnormal MSLTs after my sleep study showed no RLS or apneas. Previously, I was diagnosed with ADD and put on stimulents in high school which helped tremendously to improve my focus. (I'll throw in here that I was tested negative for Iron deficientcy, thyroid issues, etc. Don't even get me started on the suggestions of depression..) After high school, symptoms began to get worse and my excessive sleepiness was really putting a damper on my life. As I'm sure many of you share similiar feelings, I can't describe how much I fight this diagnosis verses me just being lazy, because that is usually how I feel. I really hate the person I am when I am so sleepy, and at this point I'm concerned that the time I spend sleeping is allowing me to miss valuable opportunties in life as well as preventing me from getting the most of experiences that should be enjoyable. It seems that the stimulants I take lose their effectiveness every year or two and I've been on every stimulant available as well as Provigil/Nuvigil. Currently I take adderoll 30mg twice a day, but at this time they really only work for an hour or two before I could easily go to sleep, and on the days where I work and then have something going on after I usually take 3, even 4 just to do what I need to do. I guess to sum this up I'm at the point where I am aware of the consequences of taking such a high dose of amphetamines, and it scares me, but without them I would be an empty shell and life wouldn't have much value for me. I know that sounds so depressing, but I look at it in the sense that I want to live life to the fullest, and travel and meet people and see all the things I want to because we really don't know when our time can be cut short. WIth that said, hopefully it doesn't come down to my medication being harmful to my life, so here's what I've got going on and what I've been doing about it.
1. Sleep Inertia- "physiological state characterised by a decline in motor dexterity and a subjective feeling of grogginess immediately following an abrupt awakening. The impaired alertness may interfere with the ability to perform mental or physical tasks. Sleep inertia can also refer to the tendency of a person wanting to return to sleep." That's me!
Been doing some studying on this and honestly this is what really sets me back as far as sleeping issues. To put it simply, when I wake up in the morning, I feel like I've been hit by a bus, always, for as long as I can remember. I have never, ever, woke up naturally feeling refreshed. Physiologically speaking, this is what happens to a normal person when they are awoken from a REM sleep state. With narcolepsy, I'm always in this sleep state and its the reason for why I can sleep 14hrs and still wake up feeling exhausted, and why I often dream before I'm even fully asleep. It takes me a good 3-4 hours to get up and get going with my day. As a typical narcoleptic, my alarm clock is set in about 5 different ways and I sleep until the VERY.LAST.MOMENT. possible. Which usually makes me rush to get to work or school. Its so frustrating because when I go to bed at night, I usually give myself a pep talk that goes, "Okay, your going to get up an hour earlier, make a pot of coffee, maybe read the paper, get the day started on a good note!" But this never happens, and even as I write it I realize how ridiculous it sounds. While I usually hide this from people, or make excuses as to why I can't do Sunday brunch or go for a run before 10am, the times I have tried to explain it resulted in the other person going, "Huh? Just get up 10 minutes earlier for gods sake!" I'm not sure if this is from the sleep paralysis but my blood pressure is super low when I first wake up (I tried to monitor this for a few days but the machine just "errored" it was so low) and my body hurts. Not in the way that lifting weights makes you sore, but its like I sleep so hard and deep that its just physically exhausting. I also am really dizzy, and its not uncommon for me to hit the wall on the way to the bathroom. What I've gotten into the habit of doing lately is setting my alarm an hour earlier to take an adderoll and then going back to sleep. This usually makes waking up and getting going easier because my heart is beating faster, thus making my BP higher. Although if I don't have to get up for anything I can easily sleep through the adderoll. This difficulty in getting up is a huge source of frustration in my life and it really bugs me because I feel like I could accomplish so much more if I could get up before noon.
2. Cataplexy, Hallucinations, Sleep paralysis- I do not have the cataplexy episodes where I suddenly lose conciousness, but I have noticed sudden numbess mostly in my legs with strong emotions, most often fear. For example, if I'm speeding (which is often because I'm always late for things!) and I pass a cop, I get this shooting numbness that lasts maybe up to ten seconds. Maybe this is related to my BP, not sure. Any input?
I've been told I'm quite entertaining while I sleep, and I believe it. What happens often is the hallucinations that I usually am concious of when they are happening. For example. I'll awaken and see a giant spider at the foot of my bed. I'll be terrified and either I'll be paralized for the minute or two it takes me to realize that its just the shape of my blankets or I'll fly out of my bed and the room with my heart pounding and shaking. This happens so often its usually unremarkable. I also occasionally speak in my sleep, and I have sleepwalked. But the hallucinations are really the most prevalent sign. As far as sleep paralysis, again not sure if this is related, but 90% of the time when I sleep, I awaken with my arms, hips, hands, legs, completely numb, and what I describe as "noodle-ly" before blood flow returns and they then get pretty painful fo ra few minutes. I'm thinking this is because I sleep so hard that I don't change position enough and circulation gets cut off whereever I might have funky positioning. I have had episodes where I wake up terrified because I am completely paralyzed but these are rare, maybe a few times a year.
3. Progression- I know there has been some evidence as to one of the causes of narcolepsy being Mono, which I had when I was 15. While I was a big sleeper as a kid, it wasn't close by any means to the degree it is now and I definitely see a trend where it got worse after I had mono.
4. Experiments!- The past two years I've been into looking for alternative ways to treat narcolepsy without much gain. I take vitamins and fish oil supplements daily. I do alot of long distance running. (But obviously I need to be up for a few hours and take my adderoll otherwise I probably wouldn't last more than a mile) Tried the gluten free diet for 3 months and at first I thought I was waking up easier but over time this went away. I've found that times I eat significantly high amounts of carbs (mexican food, pizza, etc) I get super tired after, and if I sleep, I have crazy dreams and get really thirsty. (Looking into getting a blood glucosometer to test my blood sugars at these times because the symptoms feel similar to hyperglycemia) Looking into giving the ketogenic diet a shot because I think I do feel better on small amounts of carbs. I drink on occasion, maybe 3-4x a month. Interesting observation, I wake up significantly more "refreshed" after a night of drinking, thats to say that besides the nausea, headache typical of a hangover, I can actually wake up without being able to fall back asleep. Since alcohol messes with REM sleep, I wonder if it stops me from going into it so fast and for as long as a I normally do? Any thoughts on this? (Don't worry, not looking into treating my narcolepsy with alcoholism, just an observation!) I don't smoke or do drugs. I have an appointment with a sleep specialist in a few weeks and I'm going to look into giving Zyrem a shot because besides switching meds constently for the rest of my life, its the only other option.
4. Professional Work- This is also an area that is becoming increasingly worrysome. While I'm sure its related to the stress of being a full-time nursing student in her last semester (previous semester I was half time) while still trying to work during my free time, but concentrating on my tasks is getting harder and I find myself making mistakes. Obviously, as a nurse, this is a huge concern. A few symptoms I've been seeing the past few months that are new are memory relapses, difficulty vocalizing my thoughts, and brain fog. There was an incident that really freaked me out a few weeks ago when I was handed a medication by a patients mother to refridgerate. When it came time to give this medication, I could not remember clearly if that mother gave it to me, and since it was a busy morning and I had an exam on my mind, I concluded that I must have mistaken this thought she gave me something for another patients family member who brought supplies I took. Long story short, I couldn't find this medication and wasn't able to give it. Later it was found by my manager in the fridge. When she confronted me about it, I told her the truth, that I didn't remember getting the medication, or putting it in the fridge. It was a rude awakening because it was a semi-important med that could have put my patients life in danger, and it really scared me. I'm taking a year off of nursing to do some traveling after I graduate for a few reasons. One being I love to travel, and want to do it before I tie myself down to a full-time nursing schedule. (Which I'm not even sure I am capable of handling) but I also need this break to figure out how to handle my narcolepsy better without putting other people at risk. If I'm experimenting with treatments like Zyrem, or giving the ketogenic diet a shot, I don't want side effects to hinder my nursing responsibilities. Anyone have similiar experiences or concerns?
Well thats all for now. Sorry I wrote an entire book here, I guess venting some of these concerns was good for me and needed to be done. I want to try and know everything possible in regards to the narcolepsy so that at least when I beat myself up for wasting an entire beautiful day asleep in bed, or not going out with my friends on a friday night because I'm too tired; I know I'm doing all I can. Narcolepsy is especially hard because I dont think people can understand it unless they have it, and having to defend myself that I'm not lazy can be hard. So thanks for reading, and again, I'd love to hear from others with similiar experiences, advice, or input!