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.
Just to let everyone know the situation. I work shifts first and third. I have also develeped migranes when I work that shift. Never the same pattern either. I just did 5, 3rd shifts and athough I sleep I wake up often. But this time I did the last one 4 days ago and I still have what the kids call the narcoleptic nod. I can't seem to want to go to bed either. Can't stay asleep Can't stay awake. Can't lay down to tired to get up. Does anyone understand?
I have a huge problem with sleeping, staying asleep, not sleeping, wanting to sleep all the time, sleeping during the day, etc etc etc...
I feel like I am all switched around half the time. I was told to have a more regular sleep schedule. Uh ok...if I could do that then maybe I would not have N at all right?? Seems to me that regardless if I go to bed at 9pm or 1am I will still feel the same in the morning. I will still nod off throughout the day and I will still want to go to bed at any given moment. When I o go to bed earlier I wake up more often and have more SP and HH. I get up to walk it off and go right back to it. Nice to have N huh? lol.
Do you work these shifts in a pattern at all? Maybe 3 days 3rd, off a day, then 3 days first type of thing? Which shift is easier for you? I work first shift but I think 3rd might actually be so much better for me seeing as how I seem to sleep better during the day and feel more awake at night. The switching would drive me crazy...can you look for employment somewhere other than a hospital? Hours might be better in another facility, or at least more routine and planned?? Hope this helps some, just know you are not alone. Whatever your going through or whatever your symptom may be, I am sure someone here can relate...if not most. Hope it gets better soon for you!
For me, I seem to get a spurt of semi-energy in the evening, and have to force myself to eventually go to bed. It seems to be getting later and later where I feel I can actually go to sleep. Of course, when I finally do lie down to sleep (after downing a number a pills whose side effect is drowsiness, I am asleep in minutes, maybe seconds.
Then I wake up an hour later, maybe go to the bathroom, maybe even check my email, but then back to bed I go only to awaken an hour later again. This goes on several times.
Sometime between 6am and 8am, my dog is begging to be let out and fed, though she doesn't wake me up. Rather she sees me wake up and she looks at me with this hopeful look in her eyes. Basically she's has to go out really bad, but comes in all hungry. So I feed her, and we go back to bed again. That's when I get what I consider my 'best' sleep. I don't awaken until 10 - 11am and I force myself to get out of bed. I turn right around and make the bed, so it looks less tempting to crawl back into.
So technically, once I go to bed I can't seem to get in there until very late. I take my meds, work a crossword puzzle or something, then it's lights out. And I immediately fall asleep. It's the sleep, wake, sleep, wake, sleep, etc. dance my body is plagued with.
It's called disruptive nighttime sleep. It's this very reason I think I put off going to bed. Besides, when I am finally up for the day, I'm still so sleepy. Take my meds immediately, but it seems I'm good for nothing until my second dose.
I'm going to try forcing myself to go to sleep earlier, by doing it in half hour increments, so I can get up earlier the next day, but I wonder if it will do any good. Still, I have to try.
Narcolepsy is complex, affecting us in so many ways. Unfortunately for you, you probably have shift work syndrome as well.
It does make sense, though, that our sleep is all mixed up. Without hypocretin to control our sleep center, it basically gets all screwed up, with it's switch turned on 24/7, and our symptoms are all a result of that. We get very little consolidated deep sleep which is so important to our entire body, as it's the time the brain and body do all their maintenance work. Yes, we get deep sleep, and if you add up all the deep sleep, we don't really get less than the average healthy person. We just don't get it to stay around for any length to be effective.
This creates a sleep deficit, and you go on and on like this for years and become extremely sleep deprived. Hence, our symptoms tend to get worse.
I have a friend who has disrupted nighttime sleep so bad, that she sits at her computer at various times of night (basically because her body will not let her go back to sleep for a while). It is during those times that she send me emails, and you can actually tell when she nods off while she's typing, then wakes up, etc. Interesting email come from this. Her fingers will be on the wrong keys, so I have to decipher what she is trying to say.
I get strong urges to nap during the day (and I HATE that as it makes me feel so utterly unproductive). I can't tell you how many times I've fallen asleep while typing. Or I'll be out in my garage where I have my craft working area set up. I have a humongous bed for my dog out there, and when nap time hits, I just lie down on her bed with her. I can't imagine what my neighbors must think..
I COULD take my Adderall when I let the dog out and feed her, but I can go right back to sleep, Adderall or no Adderall that early.
Truly, good sleep 'hygiene' is best for all of us. Going to bed the exact same time, awakening the same time, and of course, no caffeine before bedtime, not reading or watching TV in bed. I am not good about any of those things.
Narcolepsy is not for sissies, that's for sure.
Arizona, you got that right.... N is def. not for sissies! How's that for a slogan?
Tirednurse, I hear you! Nursing is not for sissies either! I managed my problems with waking up in the morning by working third shift for years. I'm going back to days, because it's becoming very hard to manage third while having a family. I'm still a night person at heart though.
Having been in your shoes, I can really offer no other advice then to stay on one shift. Five third shifts in a row is brutal- even for a night person, and I'm guessing most, if not all, were 12 hr shifts. I hope you didn't pull that on a short-staffed MedSurg floor- but I've been there, done that. I bet you coudn't sleep because your back and feet were screaming!
Anyhow- switching shifts is not healthy. Esp in nursing, but we all do it even though we would fuss at our pt's if they did it, lol. I don't know were you live or what the employment options are, but I promise you.... you'll feel a lot better on one shift. Eventually- a position will come available that doesn't require rotating shifts. PRN is also an option, if you can afford to lose the benefts or can insurance another way- I have been PRN and worked 'full time' hours. Another thing that may help the insomnia is melatonin, if the Doc says it's ok- I use it and it helps tremendously. Your melatonin/sleep cycle is bound to be off from going back and forth so much. If you're not on N meds, I'm sure you would qualify for provigil for the shift-work sleep disorder.
Good luck! I hope it gets better.
i sleep like a log for about 2 hours then constantly wake up from then on. it seems when i need to sleep day or night its always about 2 hours ggggrrr.
I know about having to work to keep beni's & support the family. That is such a hard place to be in--not to mention the prison! My first job was in a jail ward of a huge metro hospital. I toured the main jail. No thank you to that place. It was an eye opener to a sweet 14 year old new grad--and God bless you too--that is very hard and thankless work for the most part....although the deputies where I worked were pretty cool.
take care of yourself! ((hugs))
On the outside we appear 'normal' but in my opinion, most of us actually work very hard at keeping up that appearance. At least I find myself doing that. It's like a double edged sword. We do want to appear to be okay, yet that becomes a curse almost. If we can manage to appear 'normal' (whatever that is anymore), then people think narcolepsy can't be all that bad.
That reminds me of when I was taking Provigil. And has what happened, that happens with the majority of my meds, I was experiencing a bad and rare side effect. I became very depressed.
The depression came on very slowly and got so bad over time that I was feeling suicidal. Another narcoleptic on another on line support group realized it, and wrote me about his own depression issues when he was on Provigil. He suggested not taking it for just one day and see if I didn't feel better. Sure enough, I felt a lot better (mood-wise). Two days without Provigil, I almost felt like a new person. My sleepiness was horrendous, but I wasn't carrying around this disabling depression.
Anyway, my point is that a friend from church decided I needed a fresh coat of paint on the interior of my house, even painting some of my furniture. I insisted that was a want, not a need. He insisted sometimes it's also a need. So they painted away and everything looked great. But I still was in the grip of this horrible depression.
So one day my friend was made a comment about my depression. He questioned whether or not I was really depressed and perhaps I was manipulating people because of it to do things for me. Wow. I was shocked. Here I was feeling like I couldn't go on, and he said, "You know, I've seen you smile and laugh." I guess in his mind, a person must not be depressed if they can still manage a smile or a chuckle.
Anyway, that is why I say narcolepsy isn't for sissies. We try to carefully manage our time, picking our battles, trying to exist on meds that many times help only minimally. It feels like narcolepsy has taken away so much of who we are and what we can accomplish. We oftentimes don't realize how amazing we really are. Hence, it's not for sissies.
I also say getting old isn't for sissies because I have officially accepted that I am old. Two years ago I became a great grandma, and in my book, great grandma's are 'old.' Actually, it's not so much being a great grandma, but being the mother of a grandfather . . . well THAT made me feel old!
Besides I'm at the age where arthritis is bothering me, apparently my heart is now giving me problems (I see the cardiologist today to get results of all my testing), and the old gal here just ain't what she used to be. But I keep plugging along.
(I'm really not all THAT old. I gave birth to my oldest son when I was 11. At least that's what I tell folks. LOL If he would just stop having birthdays. He turns 40 next summer!)
I hear you about carrying the bene's, it's the same in my family. As expensive as mine are, it would cost alot more to go with my husband's option- plus we'd lose the 'employee discount' and the use of the hospital pharmacy. On top of that, if you have all the other good state bene's, it's definatley something I wouldn't want to lose either. I imagine you don't want to rock the boat at work either by getting a note from the doc to restrict you to one shift... even in nursing the good jobs can be hard to come by.
So, that's out. I understand about the nuvigil as well- it has worked much better for me then provigil did. I also have noticed that it seems to have a culmulative effect- the longer I take it the better it seems to work overall. If I miss a dose one day, even taking the normal dose the next day doesn't seem to work as well. Having had to fight the good fight with insurance on numerous occasions, there a few options that I can think of, but you may have already tried them.
One, have you exhausted your appeals process through your insurance company? Usually there are at least three appeals you can go through, and you'll need a Doctor's statement after the first one. If this doesn't work, do a google search on your state and see if your state offers healthcare mediation and an appeals process. Most do. In my state, over half of the appeals are won by the individual, but in my experience, just the mention of state mediation usually gets your appeal approved. The insurance compay has to prove to the state that what your asking for is unreasonable and they are usually unable to prove this. It's also something that shouldn't be an issue with you and yor job- so, in theory, it shouldn't be used against you.
Second option is some type of medication assistance program. This varies from state, and even for individual counties, but most have some type of prescription assistance program. If your husband is not working, it's always possible you may qualify for medicaid or partial medicaid, but I can understand not going this route. There's also the PPA program, but I don't think nuvigil is on the list. Still, there may be a program in your county for prescription assistance, usually funded by grants and whatnot, so it would be worth calling about. If you have a program to help the elderly, that would be the best place to call as they usually have numbers for all the resources available. If you have a free clinic, they should have the info as well. Cephalon also has a prescription reimbursement program, designed to help with high co-pays or denials. I don't know much about it, but you can get info here:: http://www.nuvigil.com/pat/wakefulness_center/7_day_coupon.php
Another option, especially if you use a small pharmacy and have a good relationship with them, is to throw yourself at their mercy, so to speak. See if they would be willing to give you the other 13 or so pills needed monthly at cost.
The last idea I have is to talk to the doc. If s/he's getting a bunch of samples, maybe s/he'd be willing to keep you supplied for the time being until things can work out better. Or, maybe the doc can prescribe it a different way. If you only need 150mg, maybe it can be prescribed as 300mg. Or, maybe you can have a prescription for 250mg and break it in half. If you need 250, the doc may be willing to prescribe 500. I know docs do this, because I have several pt's who take expensive BP pills and get a prescription for the larger dose but break the pill in half. And ask your doc about melatonin- it really does help in situations where one's sleep cycle is off from working rotating shifts.
I'm sorry that you have to go through this! It's just not fair to have have insurance and still not get what you need.