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#1 munky

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Posted 29 November 2012 - 06:05 AM

Hi! I'm Kendra, but I go by munky, and generally answer to it better than my actual name.

I'm 37 years old and have just been diagnosed with Narcolepsy w/o "emough cataplexy to warrant medication." Which, translated from doctor-speak, means that I may have had a cataplectic attack or two a long time ago, but even I'm not sure that's what it was. And, frankly, if I were going to have a cataplectic attack, I think I'd've done it when the old man rode his bike out in front of my car not long ago (no injuries or serious damage to either of us, thank goodness)! Granted, I was shaking so hard I had trouble getting my insurance card out of the envelope, but no loss of muscle tone, no collapse. So I figure I'm lucky enough to not have cataplexy.

I work third shift--right now, it's an 8-hour shift, but they'll be making me switch to a 12 hour shift starting in mid-January--and I love it. I have always--and by "always" I mean "since the day I was born, according to my mother"--slept better during the day than at night, although "better" has become a relative term, so I don't plan to change shifts. I'm not fond of 12-hour shifts, but we'll see how that goes. I'm also in school, pursuing the Bachelor's Degree I ostensibly need for my current position. I got into this position by time-in-service (or "time served" as it sometimes feels), but I'd actually like to change career paths, and I'll need the sheepskin for that.

As I said, I was only just diagnosed--just over a week ago. My neurologist/sleep specialist gave me two sample packs of Nuvigil, one of 150mg, one of 250 mg, and told me to start with the lower dose, then try the higher dose and let him know which worked better. I took the 150mg for the three days that I worked last week, and started taking the 250mg on Monday. The 150mg didn't do much, but the 250mg is ... so far, a miracle. Not only do I manage to stay awake through my entire 8-hour shift, with the exception of a single scheduled nap halfway through, but I even stayed awake through both of my classes Wednesday morning, with a planned nap in between.

I feel ... awake, for the first time I can remember. I realized on my way home from school on Wednesday morning that I was smiling, and I couldn't remember the last time I'd done that, either. It isn't that I was really depressed or anything, just ... apathetic. I didn't have the energy to care. I'd smile when something in particular happened, but not just ... just because.

I am NOT looking forward to the weekends, when doc said not to take the Nuvigil (unless necessary) so I wouldn't build up a tolerance to it as quickly. I know I'm going to be wrapped back up tight in that fog of exhaustion I'd lived in for so long. It'll be even worse than those few minutes between when the drug wears off and when I go to bed, or between when I wake up and when I take the day's pill. But at least I know that it won't last, that come the start of the week, I'll be awake again.

The diagnosis can be scary, yes, but ... it's so good to finally know what's wrong, even to finally know that there was something wrong!



#2 Megssosleepy

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Posted 29 November 2012 - 11:03 AM

Hi! I'm Kendra, but I go by munky, and generally answer to it better than my actual name.

I'm 37 years old and have just been diagnosed with Narcolepsy w/o "emough cataplexy to warrant medication." Which, translated from doctor-speak, means that I may have had a cataplectic attack or two a long time ago, but even I'm not sure that's what it was. And, frankly, if I were going to have a cataplectic attack, I think I'd've done it when the old man rode his bike out in front of my car not long ago (no injuries or serious damage to either of us, thank goodness)! Granted, I was shaking so hard I had trouble getting my insurance card out of the envelope, but no loss of muscle tone, no collapse. So I figure I'm lucky enough to not have cataplexy.

I work third shift--right now, it's an 8-hour shift, but they'll be making me switch to a 12 hour shift starting in mid-January--and I love it. I have always--and by "always" I mean "since the day I was born, according to my mother"--slept better during the day than at night, although "better" has become a relative term, so I don't plan to change shifts. I'm not fond of 12-hour shifts, but we'll see how that goes. I'm also in school, pursuing the Bachelor's Degree I ostensibly need for my current position. I got into this position by time-in-service (or "time served" as it sometimes feels), but I'd actually like to change career paths, and I'll need the sheepskin for that.

As I said, I was only just diagnosed--just over a week ago. My neurologist/sleep specialist gave me two sample packs of Nuvigil, one of 150mg, one of 250 mg, and told me to start with the lower dose, then try the higher dose and let him know which worked better. I took the 150mg for the three days that I worked last week, and started taking the 250mg on Monday. The 150mg didn't do much, but the 250mg is ... so far, a miracle. Not only do I manage to stay awake through my entire 8-hour shift, with the exception of a single scheduled nap halfway through, but I even stayed awake through both of my classes Wednesday morning, with a planned nap in between.

I feel ... awake, for the first time I can remember. I realized on my way home from school on Wednesday morning that I was smiling, and I couldn't remember the last time I'd done that, either. It isn't that I was really depressed or anything, just ... apathetic. I didn't have the energy to care. I'd smile when something in particular happened, but not just ... just because.

I am NOT looking forward to the weekends, when doc said not to take the Nuvigil (unless necessary) so I wouldn't build up a tolerance to it as quickly. I know I'm going to be wrapped back up tight in that fog of exhaustion I'd lived in for so long. It'll be even worse than those few minutes between when the drug wears off and when I go to bed, or between when I wake up and when I take the day's pill. But at least I know that it won't last, that come the start of the week, I'll be awake again.

The diagnosis can be scary, yes, but ... it's so good to finally know what's wrong, even to finally know that there was something wrong!


Welcome to the NN! I am so glad that the first medication you tried has worked so well for you! Sometimes it be a pain in the a$$ to find the correct medications. Hopefully the weekends wont be to bad for you... maybe your doc would allow for a small dose of another stimulate for the weekends so you can be productive. I got stimulant free most weekends, but I am on the night time medication Xyrem. The Xyrem really helps me not need to take my addreall on the weekends (as long as I get a couple of naps)

It does feel so amazing when the fog is lifted... makes it hard to believe that we lived under that fog for so long! Good luck with school!

#3 munky

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Posted 29 November 2012 - 11:18 AM

Welcome to the NN! I am so glad that the first medication you tried has worked so well for you! Sometimes it be a pain in the a$$ to find the correct medications. Hopefully the weekends wont be to bad for you... maybe your doc would allow for a small dose of another stimulate for the weekends so you can be productive. I got stimulant free most weekends, but I am on the night time medication Xyrem. The Xyrem really helps me not need to take my addreall on the weekends (as long as I get a couple of naps)

It does feel so amazing when the fog is lifted... makes it hard to believe that we lived under that fog for so long! Good luck with school!


Thanks so much!

I'm hoping the weekends will be okay. While I'm in school, I'll have homework to keep me busy, and as long as I can keep busy, I'm generally okay. I mean I'm still exhausted and still have sleep attacks, but keeping busy helps reduce the number of them. I'm just dreading the contrast between the weekdays and the weekends!

I'm also very, very happy that I was lucky enough to hit on the right medication right away. I've read several other people's stories on here, and I was reading having to go on that roller coaster! I just hope the Nuvigil keeps working, since I know how easy it is to build up a tolerance to some medicines. I've done it with other things, like acetaminophen. Does nothing for me anymore. So, fingers crossed that the Nuvigil will last!

#4 SleepyRaffie

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Posted 29 November 2012 - 12:53 PM

Hi!

I am 37 also and was diagnosed back in May. I am really happy for you that Nuvigil is working for you. I still haven't quite figured out my medications, but with Xyrem things are looking up. I do understand that "smiling just because". When I have a good day and actually have energy that I never new existed, I find this happening. I also find that I get things done so much more easily. It is a great feeling!

I agree, it is good to know that there actually is something wrong. Now I can work to get it under control.

#5 exanimo

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Posted 29 November 2012 - 09:26 PM

Hi Munky, welcome to NN! Very glad you found your way here and are feeling better with the medication!

I think it's odd that your doctor recommends only taking the medication on the weekdays, even though his concerns about tolerance are valid, I'm not sure that skipping doses is entirely appropriate. But I don't know, just thought I'd mention it. Especially since with most long term medications, doctors are usually strict about not skipping dosages, because you might experience adverse affects. I'm not sure if Nuvigil would have any, and I take it myself (and sometimes miss doses, especially on my days off), but just something to consider.

The only other tip I wanted to add, especially if now, or in the future, you find it hard to wake up early or start your day earlier, that taking your medication about a half hour before you need to be up, makes it a lot easier to get up. I just started doing this, because I'm chronically late to everything if it's before 11 am, and it has helped immensely! I still generally try to avoid early appointments, classes or work shifts, but sometimes I can't get out of it and taking my medication a half hour before I need to get up, going back to bed, makes it a lot easier to get out of bed when my second alarm goes off.

When I started taking Nuvigil (about four or five months ago) I was appalled at the price! My Neurologist told me beforehand that it was pricey, and that there was a generic on its way, but because of that the drug company made it even more expensive to gain as much profit as possible (before the generic came out, thereby decreasing overall profit.) Anyway, I have two insurances, and I hadn't met my deductible, so it was really expensive. It is better now, since meeting the deductible, but still! Anyway, I was doing some research the other day and the nuvigil website (www.nuvigil.com) has some offers about a free first script, and paying less for subsequent refills. I don't know all the specifics, but if you need any extra help with paying for it, it might be worth checking out!

Hope to see you around, and that your medications continue to help you manage your symptoms!

- Jessica

#6 munky

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Posted 30 November 2012 - 12:47 AM

Hi Munky, welcome to NN! Very glad you found your way here and are feeling better with the medication!

Thank you!

I think it's odd that your doctor recommends only taking the medication on the weekdays, even though his concerns about tolerance are valid, I'm not sure that skipping doses is entirely appropriate. But I don't know, just thought I'd mention it. Especially since with most long term medications, doctors are usually strict about not skipping dosages, because you might experience adverse affects. I'm not sure if Nuvigil would have any, and I take it myself (and sometimes miss doses, especially on my days off), but just something to consider.

I think this is because I have a history--and family history--of building tolerances to medications. For instance, among my other issues, I've had arthritis since I was 6 years old. I'd take Tylenol to help with the aches and pains, but by the time I was a teenager, it didn't help anymore. I could still take Tylenol for fevers, but it didn't help with pain and I had to switch to ibuprofen. In my early 20s, Tylenol stopped working even for fevers--which I found out when I came down with a bad case of bronchitis, kept taking Tylenol for the fever, and it just kept going up. So now, it's ibuprofen for that, too. And, at this point, I have to take at least 800mg (twice the "normal" dose) to have any effect at all, and that only works for minor pain. If it's bad, I take 1000mg. And most of the time, I just ... work around the pain so I don't end up having to take something worse still. But, then again, when you're in pain most of your life, you tend to build up a pretty high pain tolerance, too--or I did, anyway. So, I'll do everything I can to keep from building up a tolerance to the Nuvigil! And I've never been a terribly social person, so I don't do a lot on the weekends, anyway. Most of my weekends are spent doing chores, getting our little hobby farm set up, doing homework or hobbies. I don't seem to have a very severe case of narcolepsy, however that works, so as long as I have something to focus on, I can usually make myself work through the fog. Thankfully, my mother was diagnosed with narcolepsy (no cataplexy) several years ago herself, so she understands exactly what I'm going through. She was on Provigil, and stopped taking it entirely when she retired and moved to Arkansas with me. Now, she just take a nap for a few hours every afternoon, before dinner, and whenever else she needs to. Like me, if she has something to do, she gets along. She doesn't, however, drive any long distances by herself, go out when she's feeling tired, stuff like that.

The only other tip I wanted to add, especially if now, or in the future, you find it hard to wake up early or start your day earlier, that taking your medication about a half hour before you need to be up, makes it a lot easier to get up. I just started doing this, because I'm chronically late to everything if it's before 11 am, and it has helped immensely! I still generally try to avoid early appointments, classes or work shifts, but sometimes I can't get out of it and taking my medication a half hour before I need to get up, going back to bed, makes it a lot easier to get out of bed when my second alarm goes off.

What a great idea! I'm doing okay at the moment, but I'll definitely keep that in mind in case I have problems down the line. I've been making notes as I'm reading through the boards on the little tips and tricks that people have mentioned working for them. I'm also weaning myself off caffeine, and planning to reduce the amount of sugar in my diet. There's a great little place not far from my house that has a couple beehives and sells their honey. I'll be using that where I can, and we'll be trying out stevia as a sugar alternative. If it works out, we'll start growing our own. Also getting some lemons and limes so I can add a little flavor to water ... I hate plain water, though I've been drinking it in the mornings after I get home from work and/or school. Also trying to decide what kind of fruits I want to start tossing in the blender to make my own no-sugar-added juices.

When I started taking Nuvigil (about four or five months ago) I was appalled at the price! My Neurologist told me beforehand that it was pricey, and that there was a generic on its way, but because of that the drug company made it even more expensive to gain as much profit as possible (before the generic came out, thereby decreasing overall profit.) Anyway, I have two insurances, and I hadn't met my deductible, so it was really expensive. It is better now, since meeting the deductible, but still! Anyway, I was doing some research the other day and the nuvigil website (www.nuvigil.com) has some offers about a free first script, and paying less for subsequent refills. I don't know all the specifics, but if you need any extra help with paying for it, it might be worth checking out!

My doctor actually gave me a brochure that comes with a little card to get the free first prescription. It also allows for reduced prices on further prescriptions, except I won't be able to use that part of it. Starting the first of the year, the prescription insurance I have from work is going to require I get any "maintenance drugs" through mail-order, and the offer from Nuvigil doesn't cover mail-order. Still, I set up a HSA every year that should at least help cover those costs. Still, I'm not looking forward to finding out just how much it's going to cost me.

munky