ellec

Any Positive Nuvigil Experiences?

25 posts in this topic

I was diagnosed with narcolepsy on Friday and was prescribed Nuvigil. I haven't started it yet, but have yet to read any positive experiences, which makes me very hesitant. My N isn't terrible, I feel foggy a lot and sleep any chance I get, but all the horror stories I read make me wonder if it's just better to deal with the symptoms as opposed to the side effects. Any positive experiences?

Thanks for your help... this is all so very new to me and like many people, I never would have guessed in a million years that my symptoms were due to N. I just assumed I was a sleepy person!

Share this post


Link to post
Share on other sites

Well remember, this forum is full of PWN who've taken to the internet to vent and to try to find new treatments, because the normal stuff hasn't been working. In other words, most of us you will run into on here have particularly bad cases of N or at least cases that haven't responded well to treatment. We aren't an accurate statistical representation of narcolepsy and effectiveness of narcolepsy treatments. And unfortunately, you can't unring the bell, but in the future, never look up side effects to new medicines which are psychiatric or related to psychiatric medicine. Your doctor will generally tell you about the more dangerous/physical side effects of medicines and you can inquire if he does not, but, in general, once you look up the psychiatric side effects of a medicine, in time you'll convince yourself you have every single one of them. Kind of like a reverse placebo effect. Just some friendly advice from a guy who's been bounced from medicine to medicine and doctor to doctor for years now. :) One time I even had a doctor just come out and tell me "I'm not going to tell you any of the side effects of this medicine because the dangerous ones are exceedingly rare and you're going to think you feel them all if I do."

Share this post


Link to post
Share on other sites

I was diagnosed with N w/ C last summer and my neurologist prescribed me Nuvigil. Prior to a diagnosis I had been given Phentermine as a short term weight loss aid - and used it sparingly to stay awake on days I really needed to. I'd also tried Provigil before I got the nuvigil.

I haven't had any side effects - I can't remember whether it was nuvigil or Provigil but I did experience some really bad headaches when I first started taking one of them.

So for me, nuvigil has been great. I can usually get through my day all right - inactivity can still cause me to experience micro sleeps or brain fog but I get through it. I've also found that avoiding high starch foods earlier in the day helps me to make it through my day more awake.

And medication holidays help me when I notice that my dosage isn't working as well as in the past. Just remember that everyone is different and these medications are used to improve symptoms not cure them. So I still am much more tired than a normal person but I am much more awake on the nuvigil than I was without it. Good luck!

Share this post


Link to post
Share on other sites

Well remember, this forum is full of PWN who've taken to the internet to vent and to try to find new treatments, because the normal stuff hasn't been working. In other words, most of us you will run into on here have particularly bad cases of N or at least cases that haven't responded well to treatment. We aren't an accurate statistical representation of narcolepsy and effectiveness of narcolepsy treatments. And unfortunately, you can't unring the bell, but in the future, never look up side effects to new medicines which are psychiatric or related to psychiatric medicine. Your doctor will generally tell you about the more dangerous/physical side effects of medicines and you can inquire if he does not, but, in general, once you look up the psychiatric side effects of a medicine, in time you'll convince yourself you have every single one of them. Kind of like a reverse placebo effect. Just some friendly advice from a guy who's been bounced from medicine to medicine and doctor to doctor for years now. :) One time I even had a doctor just come out and tell me "I'm not going to tell you any of the side effects of this medicine because the dangerous ones are exceedingly rare and you're going to think you feel them all if I do."

 

This is so true.  I cannot express how much I agree with you here.  If a medication is working, people have little reason to go onto a forum posting about it.

 

I was diagnosed with N w/ C last summer and my neurologist prescribed me Nuvigil. Prior to a diagnosis I had been given Phentermine as a short term weight loss aid - and used it sparingly to stay awake on days I really needed to. I'd also tried Provigil before I got the nuvigil.

I haven't had any side effects - I can't remember whether it was nuvigil or Provigil but I did experience some really bad headaches when I first started taking one of them.

So for me, nuvigil has been great. I can usually get through my day all right - inactivity can still cause me to experience micro sleeps or brain fog but I get through it. I've also found that avoiding high starch foods earlier in the day helps me to make it through my day more awake.

And medication holidays help me when I notice that my dosage isn't working as well as in the past. Just remember that everyone is different and these medications are used to improve symptoms not cure them. So I still am much more tired than a normal person but I am much more awake on the nuvigil than I was without it. Good luck!

 

I got headaches from Nuvigil for the first 5-7 days, but after that they disappeared.  For reference I am migraine and tension headache prone.  It's an incredibly helpful drug for myself, N with C.

Share this post


Link to post
Share on other sites

All of the above posts are spot on. For me it was headaches, reduced hunger, and light sensitvity. It lasted for about 7-10 days. Certain days are better or worse still on the Nuvigil, it doesn't cure you. But it makes days a lot more managable, and I fall asleep soundly (and usually stay asleep) all night. I've been on it for 7 months now. It is much better (for me) then the alternative treatments.

 

With all of that said, lifestyle changes will be needed. No pill will ever be a silverbullet.

Share this post


Link to post
Share on other sites

All this is making me wonder if I should have stuck with Nuvigil longer. Provigil, I used for about 2 weeks and it made stuff worse, not better. So when I started Nuvigil, I gave up after the 2nd day because it was such a similar medicine and I seemed to be having the exact same side effects.

Share this post


Link to post
Share on other sites

Thanks for all the posts! I'll definitely stick with it for a few weeks to see how it goes (at least until I see my doctor to discuss). I think for me, it's hard to get into the mind frame that I need medicine to help me day to day since I've clearly been living with this for years without knowing.

Share this post


Link to post
Share on other sites

That is a hard one. Even now, its weird to know that in my mid 20's, I might require a pill a day (or most of the week) for the rest of my life to just get through life awake. It's certainly a shift. 

Share this post


Link to post
Share on other sites

Nuvigil didn't work for me :/. But that is just a personal thing. My EDS pretty much devoured the medication rendering it ineffective.

 

And I agree with DR that you shouldn't read side effects. But in this case, I am glad I read some because it does state that Nuvigil and Provigil have a chance of making birth control less effective. PHEW! Dodged a bullet on that one. I guess it's a good thing it didn't work well ;b

Share this post


Link to post
Share on other sites

I took Provigil for 9 years, and it really helped me stay awake and alert for most of the day.  There was nearly always a period in the late morning where I would have difficulty focusing my thoughts...and my eyes....until I took the second dose.  I have been taking Nuvigil for a year and 3 months, and it is wonderful how my days are more even.  Not having to remember to take the mid-day dose is great.   I still get tired by mid-afternoon, when I take a nap if I can fit it in.  

 

I also have been taking Xyrem for the past year, but I haven't noticed as much of a difference since adding Xyrem as I did when switching from Provigil to Nuvigil.

Share this post


Link to post
Share on other sites

Hi DeathRabbit -- if I can offer some advice about Provigil and Nuvigil -- sometimes the starting dose is too high.  What problem did you have with it?  Maybe I can help you as I've had problems with it and managed to overcome them by combining meds.

Share this post


Link to post
Share on other sites

I love provigil. I tried Ritalin first and it just made me want to focus on sleep. With provigil and xyrem I can manage with out naps. Love it!

Share this post


Link to post
Share on other sites

They key phrase there is "and xyrem".  How does provigil work for you without xyrem?

Share this post


Link to post
Share on other sites

I haven't had any trouble with Nuvigil, very few headaches, dry mouth once or twice. I do seem to have a little trouble getting to bed at a decent time at night. I'm sure my anxiety is worse, but I live with a lot of anxiety (for no particular reason) so I don't notice the increase enough for it to matter.

The Nuvigil has been great. I notice that I comprehend things a lot better, things seems to just "click" for me now when they didn't before. I think a lot of that is I'm not living in a constant brain fog and don't spend the entire day thinking about getting home to nap.

My doctor mentioned on my follow up that I should give some thought to using Xyrem in the future and trying to reduce the Nuvigil slightly and possibly all together. I see some of you take Xyrem, thoughts?

Share this post


Link to post
Share on other sites

I am actually more curious as to why he wants to go to xyrem if you aren't having problems with Nuvigil! My doc was only considering it if it flopped. And it did. 

Share this post


Link to post
Share on other sites

He said that long term it was better for me to be on something to help me sleep than a stimulant to keep me awake.

Share this post


Link to post
Share on other sites

has the traditional stimulant option been explored? amphetamine isomers are well tolerated by some of us. some doctors won't prescribe them anyways.

your doctor is correct if, in the long term, no one prescribes stimulants above recommended maximums which are, in fact, puny doses for anyone taking stimulants daily.

maximums are not rules. doctors may prescribe any amount they are prepared to justify medically.

your doctor's statement is so easy for him/her.

he/she is not the one too tired to work at their practice. and if that doctor suffered eds from untreated n, there would likely be no practice as medical school is far too demanding for most having this to impede all that they would do.

there would be instead as a best case scenario month long waits of harboring hope through the haze of untreated or under treated eds that as of the next visit his/her md will be fixing things up. treat not cure, of course.

then the big day would finally come and he/she would come away from the appointment with but mere words and shattered hope if the md's practice was like the one you find yourself in now.

as for the long run w/eds treatment w/amphetamine isomers, I can tell you I respond to my well-tolerated Adderall regimen now rx'ed me @ 270 mg/d for about a decade.

so you see (if you take me at my word) an md is perfectly free/able to successfully treat eds in this way. and it can be done in some of us w/o contraindications developing. my avg bp= 110/70.

but not if they lack the intrepid to so much as begin the med.

I strongly advise you to interview new doctors, if this one won't explore the ampheatamine isomers with you.

Share this post


Link to post
Share on other sites

I was diagnosed with narcolepsy on Friday and was prescribed Nuvigil. I haven't started it yet, but have yet to read any positive experiences, which makes me very hesitant. My N isn't terrible, I feel foggy a lot and sleep any chance I get, but all the horror stories I read make me wonder if it's just better to deal with the symptoms as opposed to the side effects. Any positive experiences?

Thanks for your help... this is all so very new to me and like many people, I never would have guessed in a million years that my symptoms were due to N. I just assumed I was a sleepy person!

 I was on my second round at a differnt dosage and was so disappointed the second time around that I stopped taking it and am trying vitamins. I am the same way, always really groggy and super tired, but no cataplexy. I've heard great things about Nuvigil but it is a big no for me. It makes me really cranky and really messes with my impulse control. But that is my experience, yours might be different. It did wake me up though.

Share this post


Link to post
Share on other sites

This was my first time seeing this particular doctor and to be honest, I really liked him. He made some jokes and I felt comfortable asking questions and in no way made to feel stupid (which I really appreciate in this type of setting since this is all new and a little scary).

I knew that in this first appointment he didn't know a ton about me (neither did the first doctor, I only met with him for a short time before he order the sleep study) so we talked a little about how well the Nuvigil was working, aside from me not getting to bed until close to midnight every night. We talked about working on my sleep hygiene so we could determine if the Nuvigil was what was keeping me up that late or if it was the fact that I didn't feel tired and made no effort to try to sleep and instead watched tv/played on my phone/etc. In my next appointment we'll discuss what conclusion I came to about my late bedtime so we can consider reducing the Nuvigil or leaving it the same since sleep is also an important part to this equation.

I appreciated the option of Xyrem and him explaining it to me. I like knowing there is an option down the road since I have heart disease/abnormalities and high blood pressure in my family I would prefer to not be on stimulants my entire life (in an ideal world, of course). I don't think Xyrem is something I'll explore now, but will keep it on the back burner for future discussion with my doctor. He has seen quite a bit of success with his patients using Xyrem and wanted to ensure I had all the necessary tools to ensure success (or a modified version of success that fits this particular situation!)

I'm glad I had an appointment with him and plan to see him as my main sleep doctor in the future. I think as long as he listens, provides options without being pushy, answers my questions about potential medicines I've researched or fears I'm having or really anything under the sun, and makes me feel comfortable, then it'll make managing N a little easier (and way less scary!) And that's probably most important to me... feeling like I've got another person on my team, one who understands this works far better than I do!

Share this post


Link to post
Share on other sites

I was diagnosed with N+C about 2 months ago.  First doc I saw instantly put me on Nuvigil - and I had the headaches but they went away after about a week.  I definitely felt more alert - but my cataplexy episodes still haunted me - almost daily and that was just something I had to address but couldn't find a doc to prescribe it - so I had to hunt around for the right one.

 

While still taking Nuvigil, I've had to alter the dose a little bit - some days more some days less.  250 split up am and lunch has been effective for me to keep awake and kill off my favorite afternoon 2pm nap.  I cannot nap on Nuvigil - irregardless of how much I take it just keeps the mind going for me and I can't shut it off for naptime if I take a small dose or skip one of the split doses altogether.  It does give me mild anxiety - something I've never experienced before - and I'm starting to get used to it. 

 

Now that I'm on Xyrem 7.5g / night - I find that I don't need the full 250mg split up - I can ususally get to lunch on my coffee and then take 1/2 of a 250mg Nuvigil with food.  That helps keep me alert and functionable until around 7 pm - where it's good to actually feel sleepy again.  Unfortunately, my job hours are kinda goofy - and 7pm is too early and I really have to press hard to function until around 10pm when I get home.  Then its the Xyrem dose and off to the land of nod.  My biggest problem is trying to remember to eat - I've actually lost all my appetite and have to force myself to eat - when I should be hungry.  Hard to know if that is a side-effect of either medicine.  So, yes, Nuvigil is a positive medicine for me.

Share this post


Link to post
Share on other sites

My son tried it - didn't do anything for him. Not bad or good, just didn't seem to have any effect at all. A very expensive experiment for us.... (since he was still 16 at the time, insurance refused to pay a cent). 

 

I do wonder now.... he was very newly diagnosed and just exhausted beyond words. I wonder if now that he is on Xyrem the Provigil might be able to help if he still has some issues during the school year. I'll ask his doctor. I do know that Xyrem + Adderall = no eating. :(

Share this post


Link to post
Share on other sites

I started on the 150mg does and it worked well for about a week, then I was getting tired again within 4 hours of taking it. The doc upped it to the 250 dose and I liked that much better. However soon after it also started wearing off earlier and earlier. I'm still on the 250 dose once a day in the morning (around 7:30AM) but then I take adderall 30 mg short release in the afternoons between 2 and 4 (basically whenever I feel the nuvigil fading. This has been a very effective combo for managing my EDS. The Addreall then wears off by 9ish and I have no issues falling asleep around 10PM. 

 

I have not had any negative experiences with Nuvigil (other than it wearing off earlier than anticipated.).

Share this post


Link to post
Share on other sites

I started on the 150mg does and it worked well for about a week, then I was getting tired again within 4 hours of taking it. The doc upped it to the 250 dose and I liked that much better. However soon after it also started wearing off earlier and earlier. I'm still on the 250 dose once a day in the morning (around 7:30AM) but then I take adderall 30 mg short release in the afternoons between 2 and 4 (basically whenever I feel the nuvigil fading. This has been a very effective combo for managing my EDS. The Addreall then wears off by 9ish and I have no issues falling asleep around 10PM. 

 

I have not had any negative experiences with Nuvigil (other than it wearing off earlier than anticipated.).

That is so much! Wow! 

I think this is a great example of individual differences when it comes to drug metabolism. For me, I usually find lower doses more effective than higher doses. For whatever reason, at higher doses for most stimulants, by body goes, "Oh, there is too much of X in my system, let me just ignore it/eliminate it...and here are all of the negative side effects with none of those benefits you wanted"; which then makes it highly ineffective. I do develop tolerance over time, but usually cycling (i.e. drug holidays) has been effective. 

Share this post


Link to post
Share on other sites

It is a lot, but Without the two meds I feel like the honey badger after he gets bit by the cobra. Sleep little F#%*

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now