CPAP NOT working...Need Advice on Nuvigil

[yankeenoles]

I have been on CPAP (S9 Escape) now for a year and half and it has not helped. I still feel very tired during the day and I am now on my third doctor. Three weeks ago my new doctor loaned me an S9 APAP machine to try for one month with a range of 7 - 17. Currently my CPAP (S9 Escape) pressure was set to 12. I have been using this APAP machine for 3 weeks now and last night I downloaded my data and what I found is that my median pressure is at 9 and the highest it has gotten is 10. My highest AHI is 0.5 yet I am still feeling very tired. My doctor stated that if I did not get relief while on the APAP machine that the next step would be for him to prescribe me Nuvigil. I don't know anyone who takes nuvigil so what I would like to know from some folks on this board that take Nuvigil is does it work and how does it make you feel through out the day. Also if CPAP is not working for me is it possible that maybe a dental device might work. Any advice would be greatly appreciated.

[avi123]

Check here about Nuvigil:

viewtopic/t76663/search.php?keywords=nuvigil+

You also asked:

Also if CPAP is not working for me is it possible that maybe a dental device might work.

It depends on the severity of the sleep disorder. Dental appliances are used for light cases such as snoring.

As to Excessive Residual Sleepiness during the daytime, a French study revealed that 12% of CPAP users suffer from it.

[BlackSpinner]

I have been on CPAP (S9 Escape) now for a year and half and it has not helped. I still feel very tired during the day and I am now on my third doctor. Three weeks ago my new doctor loaned me an S9 APAP machine to try for one month with a range of 7 - 17. Currently my CPAP (S9 Escape) pressure was set to 12. I have been using this APAP machine for 3 weeks now and last night I downloaded my data and what I found is that my median pressure is at 9 and the highest it has gotten is 10. My highest AHI is 0.5 yet I am still feeling very tired. My doctor stated that if I did not get relief while on the APAP machine that the next step would be for him to prescribe me Nuvigil. I don't know anyone who takes nuvigil so what I would like to know from some folks on this board that take Nuvigil is does it work and how does it make you feel through out the day. Also if CPAP is not working for me is it possible that maybe a dental device might work. Any advice would be greatly appreciated.

Your cpap is working for you. There are other reasons you are still tired. Fatigue is only one of the symptoms of OSA. It is also helping with your heart and other organs.

[snuginarug]

I have terrible insomnia unrelated to CPAP. My doctor and I decided to try provigil (for some reason my insurance won't cover nuvigil, but they are practically the same thing). It gives me more energy. The first three days I felt very euphoric in an abnormal way, which I felt sort of freaked about. But after three days, I felt the same as usual, except less tired and better able to function. It eradicated crying spells caused by pure exhaustion. I am not terribly happy about taking it as I don't like pharmaceutical interventions. But it does what it's supposed to do,and I personally have experienced no bad side effects.

If your CPAP is working (sounds like it is) that is one thing to strike off your list of possible causes for fatigue. Now you can explore other causes, such as thyroid problems, vitamin deficiencies, other things I know nothing about but that your doctor should be aware of. The CPAP is still doing good things for you, as Black Spinner pointed out. It is enabling all your internal organs to operate with sufficient oxygen, thus preventing some problems and moderating others.

I feel for you... I am tired all the time. I had hoped CPAP would cure that. It hasn't but at least I know all my organs are getting enough oxygen when I sleep.

Good luck finding your solution!

[kteague]

Haven't taken Nuvigil but I have taken Provigil, which is prescribed for the same purpose. It did help me fight through some of the grogginess but I had to keep it at such a low dose due to getting the shakes that I couldn't get the best relief it might have to offer. I certainly understand doing what one needs to do to improve their quality of life. That said, I am glad that it wasn't my final answer. I went on in my attempts to address the cause of my symptoms. I bolstered my nutrition by being mindful of what I eat and taking vitamins and a few supplements and made some medication changes because of their side effects. I have one stubborn problem still affecting my sleepiness and that is the limb movements that mess with my sleep. My treatment of those has remarkably made a difference in how I feel when awake. It sounds like your cpap treatment is working for your OSA. I agree with what others have said that cpap has not failed in its purpose for you - to treat your OSA and prevent your body from its ravages. You may have something else going on that cpap can't fix. If you choose to take the medication, I strongly suggest you make it clear to your doctor it is not the final answer, rather a means of coping during the period of diagnosing the root cause of your symptoms and their treatment. If on the other side of that you still have residual symptoms, then it's up to you to decide if Nuvigil is a long term answer. Let us know how this progresses.

[Mary Z]

As someone else already stated a percentage of CPAP users never get over the excessive daytime sleepiness. I took both Provigil- 300 mg/day in divided doses and Nuvigil 250 mg/day for almost four years. I was one of the lucky ones who experienced no side effects. It merely helped me stay awake during the day so I could carry on a normal life. For some reason about three months ago I stopped needing Provigil. Three doctors in 1 1/2 years may not be a good idea. No one doctor has gotten a chance to know you to get a handle on your problems. You may need a Multiple Sleep Latency Test- naps every two hours for 20 minutes- about four- five cycles to diagnose hypersomnia or narcolepsy. Since you have the Escape and cannot check your numbers perhaps an oximeter might be a good investment. Are you using the machine 100% of sleep time? Good luck.

[macewa]

I take Ritalin for same purposes. Was told I would climb the walls the first 5 or so days, but never did. It helped me feel like a human again. I lost a new job because I went into narcolpsey - scary stuff. No side effects except that it has helped decrease my hunger and I've been able to lose weight for the first time in 6 years. My sleep doctor was not happy they put me on Ritalin and I guess his drug of choice might hav been Nuvigil. But I take 20 mg time released and have been for about 5 months. People could not believe the difference in me. (for whatever it's worth)

As someone else already stated a percentage of CPAP users never get over the excessive daytime sleepiness. I took both Provigil- 300 mg/day in divided doses and Nuvigil 250 mg/day for almost four years. I was one of the lucky ones who experienced no side effects. It merely helped me stay awake during the day so I could carry on a normal life. For some reason about three months ago I stopped needing Provigil. Three doctors in 1 1/2 years may not be a good idea. No one doctor has gotten a chance to know you to get a handle on your problems. You may need a Multiple Sleep Latency Test- naps every two hours for 20 minutes- about four- five cycles to diagnose hypersomnia or narcolepsy. Since you have the Escape and cannot check your numbers perhaps an oximeter might be a good investment. Are you using the machine 100% of sleep time? Good luck.

[squid13]

Maybe you should get your thyroid checked and do some blood work. You may have something else at play here.

[SleepingUgly]

I'm glad kteague weighed in, as I was about to mention Periodic Limb Movements. Dr. Guilleminault wrote an article that I can't put my hands on that was entitled something like what do you do when people with OSA remain sleepy after CPAP (well, that was the gist of it anyway!). The vast majority of them turned out to have PLMS, and did better when treated. So you might want to consider another titration to see if you have unmasked PLMS now that you're on CPAP. Also, I wouldn't bother doing the sleep study at a site that doesn't score RERAs, as I'd question a low AHI if all it did was turn my apneas/hypopneas into RERAs that went unscored.

That said, I've taken both Nuvigil and Provigil and still occasionally take Provigil. I did not experience euphoric effects, but perhaps the first dose after a long absence resulted in a slightly elevated mood (but let's face it, anything that would turn me from a cognitive-dysfunctional, sleepy mess to a normal, alert person would have to cheer me up just a little). It literally disappeared within a dose or two, if it was even there at all. If your sleepiness is greatly impacting your life, I think it's worth a try. There is nothing about these short-acting medications that would prevent you from continuing to pursue the underlying reason for your continued EDS.

[yankeenoles]

All thanks for the great info and advice. I know some folks mentioned blood work and getting my thyroid checked. I have had all of that done and everything came back normal. I have also lost 54 lbs over the last year hoping that would help, but none has helped with the daytime sleepiness. My doctor also mentioned an MSLT but I think he wanted to see if the APAP machine helped. I will certainly continue on my quest to find out my what is causing this. THanks for the info.

[SleepingUgly]

I don't see a point to an MSLT now. They will either see confirmation of your report that you're tired, or they won't. If they do, they'll consider things like Nuvigil/Provigil, which they already are ready to prescribe. If they don't, they may be reluctant to prescribe them, even if you are tired (the MSLT doesn't correlate that highly with subjective reports of sleepiness). They also can either correctly or incorrectly diagnose you with narcolepsy (incorrectly perhaps because if you're tired for other reasons, you may go into REM on naps) and then will consider those meds, and there may be negative repercussions to that diagnose. In short, I don't see how it would benefit you to have an MSLT.

[Mary Z]

SleepingUgly - it is how fast you go into REM that determines the difference between narcolepsy and hypersomnia. I agree it may not be needed, but don't think you understand about REM during the test.

[SleepingUgly]

I do understand about SOREMs. However, when a person is tired, they can go into REM "abnormally" soon, even without having narcolepsy. Hence, the possibility of a false positive narcolepsy diagnosis in someone with other reasons to be sleepy.

[NateS]

http://www.sleepguide.com/forum/topics/ ... vs-nuvigil

[Blindrage]

Haven't taken Nuvigil but I have taken Provigil, which is prescribed for the same purpose. It did help me fight through some of the grogginess but I had to keep it at such a low dose due to getting the shakes that I couldn't get the best relief it might have to offer. I certainly understand doing what one needs to do to improve their quality of life. That said, I am glad that it wasn't my final answer. I went on in my attempts to address the cause of my symptoms. I bolstered my nutrition by being mindful of what I eat and taking vitamins and a few supplements and made some medication changes because of their side effects. I have one stubborn problem still affecting my sleepiness and that is the limb movements that mess with my sleep. My treatment of those has remarkably made a difference in how I feel when awake. It sounds like your cpap treatment is working for your OSA. I agree with what others have said that cpap has not failed in its purpose for you - to treat your OSA and prevent your body from its ravages. You may have something else going on that cpap can't fix. If you choose to take the medication, I strongly suggest you make it clear to your doctor it is not the final answer, rather a means of coping during the period of diagnosing the root cause of your symptoms and their treatment. If on the other side of that you still have residual symptoms, then it's up to you to decide if Nuvigil is a long term answer. Let us know how this progresses.

Here is the story on Nuvigil and Provigil -- Provigil came first, and its first patent lapsed back in 2007. The makers of Provigil claimed that various other patents still protected the drug, but some of the generic manufacturers disagreed. There was a big lawsuit about it, and the result was that Provigil was ordered to go generic in 2012. The company that won the lawsuit was awarded a 180 day exclusive right to market the generic, and after that I believe anyone can market a generic of the drug. The exclusive generic was launched on March 29, 2012.

So how does Nuvigil differ? Many drugs are originally approved with multiple isomer variations of the active ingredients, and that is true with Provigil as well. It turns out that most times only one isomer actually carries the benefits of the drug, and the second isomer has little or no effect. This is also true with Provigil. The second isomer is active in treatment, but it is also broken down extremely quickly by the body. That means that the vast majority of the effects of Provigil are produced by only one isomer. So Nuvigil is a reformulation of the drug with only the one longer acting isomer, and the second isomer is eliminated. That is enough to get a brand new patent on the drug, and can also been seen with the reformulation of Prilosec as Nexium in the same manner. For the majority of patients the is no difference in clinical results, but marketing and some patient testimonials claim Nuvigil acts longer.So Nuvigil now has patent protection until 2023.

That means your insurance company is expecting to reap the benefits of paying for generic Provigil instead of the inflated costs of Nuvigil. It is also the reason I have asked my doctor to rewrite my Rx for Provigil. Many doctors will follow the drug company line and continue to proscribe Nuvigil, and a pharmacy can not substitute Provigil or the generic if the Rx says Nuvigil. All just part of the ugly game that our medical system has become.

One last thing about Provigil/Nuvigil, it does work. I no longer yawn all day or have to stop my head from bobbing towards the desktop. I am awake without the nasty jittery feelings and other side affects from when I tried Ritalin, Adderal, and Concerta. There are other side effects, but I no longer have to worry about proving that I can legally have amphetamines in my system if I am asked to do a drug test for work.