9 replies to this topic

[Noel]

I started taking Nuvigil about 2 months ago, but not on a regular basis. It makes me feel really off, and if I don't think I'll be in a situation where falling asleep will be a big issue I don't normally take it. I just started school and so I have been regularly taking it 3 days a week. Yesterday (Monday) I had a really really long day (from about 6am to 10pm) - I didn't fall asleep at all during the day - thanks to Nuvigil - but I also felt TERRIBLE. I had a pounding headache, felt really lightheaded and then had trouble falling asleep when I finally did get to bed (which is usually never a problem for me).

Does anyone else take their medication on an as-needed basis? I really don't want to take it every day, especially if it makes me feel like I did yesterday. This morning then I felt groggy and exhausted - which is understandable from my long day yesterday, but I would almost rather be tired all day and take a few naps then feel weird/lightheaded/irritable, and then go to bed and fall right asleep like I normally do.
Also, are these normal side-effects? I feel kind of hyper when I'm on Nuvigil, and it's hard to concentrate on one thing at a time.

I would much rather find an alternative method of dealing with N rather than medication that makes me feel worse in a different way.

I told my professor after my class that I have Narcolepsy and she looked at me like I was a total weirdo - so that was just the icing on the cake for yesterday.

ahhhh!

[Irishhh]

I started taking Nuvigil about 2 months ago, but not on a regular basis. It makes me feel really off, and if I don't think I'll be in a situation where falling asleep will be a big issue I don't normally take it. I just started school and so I have been regularly taking it 3 days a week. Yesterday (Monday) I had a really really long day (from about 6am to 10pm) - I didn't fall asleep at all during the day - thanks to Nuvigil - but I also felt TERRIBLE. I had a pounding headache, felt really lightheaded and then had trouble falling asleep when I finally did get to bed (which is usually never a problem for me).

Does anyone else take their medication on an as-needed basis? I really don't want to take it every day, especially if it makes me feel like I did yesterday. This morning then I felt groggy and exhausted - which is understandable from my long day yesterday, but I would almost rather be tired all day and take a few naps then feel weird/lightheaded/irritable, and then go to bed and fall right asleep like I normally do.
Also, are these normal side-effects? I feel kind of hyper when I'm on Nuvigil, and it's hard to concentrate on one thing at a time.

I would much rather find an alternative method of dealing with N rather than medication that makes me feel worse in a different way.

I told my professor after my class that I have Narcolepsy and she looked at me like I was a total weirdo - so that was just the icing on the cake for yesterday.

ahhhh!

First of all, I'm really offput by your professor looking at you weird. Maybe she just didn't know how to deal with that statement b/c it is kind of shocking to hear... However, you do have a disability and if you have special needs, you can get help through your schools disability office. Teachers should be better trained to deal with specialized circumstances. Like, if you need to take a test at home or stay late or come early or whatever. There are services through your school that can help. Have you spoke with anyone there yet?

Onto Nuvigil. I do not take it on an as needed basis, I take it everyday. I take a couple days off about every two weeks so I can get somewhat of a refresh. When I first started taking Nuvigil, I had raging headaches, but I soon got used to the med and they went away. I recommend you don't take it with caffeine and take a couple Ibuprofen (or whatever you tolerate) when you take the medicine. It helps combat oncoming headaches.

Nuvigil makes you hyper b/c that's what it's suppose to to. Give you the energy to be alive! The sad thing to me is that the effect didn't last. After a few weeks I was getting tired again, but in the beginning I was so happy to have something that made me feel like maybe I was experiencing normalcy.

We're all always looking for alternative treatments that will help us. How is your diet? Diet can play a role in how bad you feel or how good you feel. It's kind of hard to say b/c things affect ppl differently. Like a lot of us have found that sugar makes us feel crappy overall, even if it helps some of us for a small time... Heavy foods like processed dinners, meat, etc. can slow you down b/c it requires more energy resources in your body to process it. What else what else?? Some people have found that they have Celiac's disease and cutting out wheat and such have helped them... Supplements are good b/c our bodies are so messed up as is, so make sure you at least get a good quality vitamin b supplement. Others here might have more advice on things they've chose as well.

You'll kind of have to pick and choose as you go along until you find the things that work best for you. It'll be frustrating of course b/c Narcolepsy is so inconsistent. I largely believe diet is important though. And a bit of exercise. I know that can be difficult, but even you can just get yourself doing it, it becomes a bit easier. Even if it's light yoga, stretching, or whatever you enjoy.

I've been looking into more supplements for improving sleep quality. For a long time I was against this and thought it couldn't help me, but some people are saying they're getting success so I thought it probably won't hurt to try.

If you would like, some of us are doing a sleep diary starting Monday. We're doing it for a week and comparing results. There is a thread on this forum called Sleep Diary for One Week. You can check that out there

[Kat_A]

I started taking Nuvigil about 2 months ago, but not on a regular basis. It makes me feel really off, and if I don't think I'll be in a situation where falling asleep will be a big issue I don't normally take it. I just started school and so I have been regularly taking it 3 days a week. Yesterday (Monday) I had a really really long day (from about 6am to 10pm) - I didn't fall asleep at all during the day - thanks to Nuvigil - but I also felt TERRIBLE. I had a pounding headache, felt really lightheaded and then had trouble falling asleep when I finally did get to bed (which is usually never a problem for me).

Does anyone else take their medication on an as-needed basis? I really don't want to take it every day, especially if it makes me feel like I did yesterday. This morning then I felt groggy and exhausted - which is understandable from my long day yesterday, but I would almost rather be tired all day and take a few naps then feel weird/lightheaded/irritable, and then go to bed and fall right asleep like I normally do.
Also, are these normal side-effects? I feel kind of hyper when I'm on Nuvigil, and it's hard to concentrate on one thing at a time.

I would much rather find an alternative method of dealing with N rather than medication that makes me feel worse in a different way.

I told my professor after my class that I have Narcolepsy and she looked at me like I was a total weirdo - so that was just the icing on the cake for yesterday.

ahhhh!

Lightheadedness was the primary side effect I had for the first few days - it would come and go every few hours but was pretty bad. I also felt "hyper", but in a good way (?) - I felt like I had enough energy to tackle anything, and was motivated to be productive. I had a small headache but it was tolerable. After about a week, the lightheadedness went away completely, but so did the wakefulness. Now, it's not helping with the tiredness at all. I just went up to the higher dose (250mg)...hopefully I'll get some benefit from that.

I'm finding in my very limited experience with narcolepsy, that people do not understand it at all. Don't let your professor's reaction bring you down - she should feel like a jerk for reacting that way.

Hope you find a treatment that works for you soon.

[Noel]

Thanks for your feedback! Hearing your experiences makes me feel like taking Nuvigil even less! - if in a couple weeks the headaches go away but the effectiveness wears out, what is the point? The hyper-ness I experienced didn't feel normal, I felt jittery like I had a bunch of coffee on an empty stomach, and couldn't focus at the same time.
Exercise and diet are definitely my main way of dealing with N. I bike every day and run fairly often as well. I can tell it makes a huge difference in my alertness for the rest of the day. Same with eating more protein and smaller meals throughout the day, rather than large meals filled with carbs. I agree that diet is huge in battling sleepiness. I'm considering also trying acupuncture as an alternative treatment.
I know a lot of people have much worse symptoms than I do with N, so for me my main concern is driving but other than that I feel like I may be able to deal with my symptoms through lifestyle changes rather than medication. I do want to keep the Nuvigil around for my occasional long drive out of town.

Thanks again for your feedback, I really appreciate hearing from different perspectives.

[Irishhh]

Noel, I think it'll still be okay for you though b/c you are taking it a few days a week. It'll probably work better b/c you aren't taking it consistently so your body is not getting used to it. It helps me a ton just to take a couple days off every few weeks or one day off a week.

I really hope that your symptoms don't get worse and that you can continue the way you are. It's really awesome that you are biking and all a lot of us couldn't do it! so good job and good luck!

[sometimes]

I started taking Nuvigil about 2 months ago, but not on a regular basis. It makes me feel really off, and if I don't think I'll be in a situation where falling asleep will be a big issue I don't normally take it. I just started school and so I have been regularly taking it 3 days a week. Yesterday (Monday) I had a really really long day (from about 6am to 10pm) - I didn't fall asleep at all during the day - thanks to Nuvigil - but I also felt TERRIBLE. I had a pounding headache, felt really lightheaded and then had trouble falling asleep when I finally did get to bed (which is usually never a problem for me).

Does anyone else take their medication on an as-needed basis? I really don't want to take it every day, especially if it makes me feel like I did yesterday. This morning then I felt groggy and exhausted - which is understandable from my long day yesterday, but I would almost rather be tired all day and take a few naps then feel weird/lightheaded/irritable, and then go to bed and fall right asleep like I normally do.
Also, are these normal side-effects? I feel kind of hyper when I'm on Nuvigil, and it's hard to concentrate on one thing at a time.

I would much rather find an alternative method of dealing with N rather than medication that makes me feel worse in a different way.

I told my professor after my class that I have Narcolepsy and she looked at me like I was a total weirdo - so that was just the icing on the cake for yesterday.

ahhhh!

Provigil/Nuvigil isn't quite the miracle pill that it's sometimes made out to be in the media. It does make me feel weird and, well, medicated. For me, as-needed means, at the very least, everyday. Have you tried a lower dose? Certainly, for some people, napping may be the best course of treatment. There is also ritalin, adderall, dexadrine, and related medications.

[mayfield]

I had that brain on full blast feeling when I started nuvigil, too. I just started with a lower dose. I had some other side effects (jittery, upset stomach), but I think you need to take it every day for the side effects to go away (your body chemistry adjusts to the drug). Taking it "as needed" won't let you adjust. Took about a month for the side effects to really subside and the drug is still effective.

For me, taking a small dose (every day) plus lots of exercise/good diet works pretty well (I'm a long distance runner and am also in grad schoo)l. Meetings and classes can still get me, but it's pretty manageable.

Good luck!

[MBBoston]

Hi,



I started with 150 mg and I had all the symptoms you have described. I hated it. I am taking ½ pill now an I have no side effects. My neurologist suggested 3 day break from Nuvagil, to clean my system, and then ½ a pill. So far so good. I take it daily. Try lower dose and see what happens. As far as your professor goes, most people have never heard of Narcolepsy and may not understand what you are going through. Good luck and keep us posted.

[CloseTheWorld]

Rather than continue an intense and subjective discussion, I have chosen to simply list my data below:

NuVigil: 300mg (2 x 150mg twice per day)


Side effects: Complete loss of appetite, occasional headache (improved over time) and insomnia (physically tired as hell, but mentally hyper-awake).

[ImSleepin]

For myself on Nuvigil, I had a terrible migraine the first day I took it, and then the headaches subsided. It wasn't strong enough for me. I started at 150mg, but I just couldn't keep awake by the afternoon. For me, I had some GI issues for a couple of days, but I'm already prone to this. I have read about people who say that its efficacy seems to go down over time, too. It's worth a try, though. If the headaches are too bad, maybe you can start on a lower dose? Especially if you're now having difficulty sleeping at night.