Wondering what to expect next . . .

I was diagnosed with severe obstructive sleep apnea 9 years ago. Over the course of the next few years, I changed from a CPAP to an autotitration CPAP to a BIPAP. The BIPAP successfully treated my sleep apneas (from 98 apneas an hour to 3). Even though I would wear the BIPAP for the entire night, I still awoke each morning feeling lousy, and I was constantly tired throughout the day. I never liked the feeling of the BIPAP and consulted a sleep surgeon and made an appointment to have my tonsils removed, UPPP, turbinates, soft palate, and a partial mid-line glossectomy. 3 weeks before the surgery, I had another sleep study done along with a multiple sleep latency test - MSLT - to check for narcalepsy. The day before the surgery, I recieved the results and was diagnosed with narcalepsy. In 4 of the 5 naps, I achieved REM sleep in less then 5 minutes. The doctor put me on Nuvigil (250 mg) and told me to begin taking it two after the surgery. After the surgery, I noticed an immediate improvement in my sleep. I slept with my BIPAP as usual but awoke feeling rested, and I felt as if I was getting better sleep. I no longer snored when I napped without my BIPAP, and I looked much more rested. The problem began once I started taking the Nuvigil. While I felt the immediate effect of the Nuvigil during the day, I began having trouble falling and staying asleep at night. The first few days I slept for only 4 - 5 hours. During the day I feel great - more alert, focused, energetic - the problem is at night. Has anyone experienced anything similiar with Nuvigil? Does anyone have any advice? Thanks for any help you can offer.

Every medication seems to have a life-span of effectiveness, and I wonder if you've asked your MD about taking a Nuvigil break (? few wks) or else lowering the dose? There are other similar meds on the market now, such as Provigil.

Nuvigil is advertised that its effect lasts longer than Provigil, which I take. Are you taking it early in the morning? Trouble sleeping is listed as a possible side effect. Maybe the short acting would be better for you.

http://www.nuvigil.com/pat/what_is_nuvigil/science.php

You may have been misdiagnosed with Narcolepsy. Narcolepsy is difficult if nearly improbable to diagnose with poorly treated OSA. People with untreated or poorly treated OSA can have REM naps and other "Narcolepsy" symptoms. At best we would suspect you might have OSA and Narcolepsy. Now you have had surgery and are tolerating your BiPAP better. Maybe a re-titration of your BiPAP in the sleep lab and you'll be golden without the meds. Narcolepsy meds can cause insomnia. Essentially you are taking legal speed. In fact addicts will knock you in the head for these meds so be careful who knows you have them. If you are having difficulty sleeping you should only take the meds early in the morning. I hope this helps your understanding. Good luck.

I have been on the Nuvigil for 3 weeks and I can honestly say I feel great. I don't know if it was the surgery, the Nuvigil, or the combination of both but I feel rested when I wake up and alert during the day. The initial problems with the insomnia have subsided, and I feel 100% different during the day. I can only compare it looking thru a dirty window for a long time and then washing the window and appreciating how clear the view now appears. I know one thing and that is I never want to go back to the way it was. I have some concern about the Nuvigil - my insurance sent me a letter saying I was approved for coverage for 1 year - does that mean I have to go back and have more testing done each year in order to stay on the medication?

Not everyone successfully treated for OSA gets rid of their EDS. I would imagine all it would take would be a call to the insurance company from your doctor to recertify you a year from now for your Nuvigil.
I don't anticipate any problems for you, hoping there aren't any. I take Nuvigil, too, and couldnt do without it.
Mary Z.

How long was it from the time of your surgery until you started taking Nuvigil? You wrote that your doctor told you to start taking it "two after the surgery", so I'm not sure if it was weeks or months. If you woke up feeling tired prior to the surgery, and now you wake up refreshed BEFORE you ingest the Nuvigil for the day, that is not an effect of the Nuvigil. You could easily go off the Nuvigil, and after a period of adjusting to being off, you could assess how you feel. That would tell you how much of your alertness is due to the surgery vs. the Nuvigil, and would allow you to assess whether you still need to be on it.

No, your insurance will not want to pay for another sleep study in order to authorize more medication in a year. They will just make your doctor fill out some forms and go through the authorization process again.

Are you having sleep onset insomnia (can't fall asleep) or sleep maintenance insomnia (can't stay asleep)? Insomnia could be due to the Nuvigil. Provigil is shorter-acting.

I'm glad to hear your feeling better. True many people don't resolve their daytime sleepiness on CPAP and need stimulants. These patients report sleeping well on pap therapy but continue to complain of excessive daytime sleepiness. But I understood your story a little different. You mentioned a struggle with CPAP and never liked BiPAP and you had your MSLT before your surgery? I'm unsure of the thinking here, an MSLT before upper airway surgery to diagnose narcolepsy? Perplexing.

More commonly a patient would have a non-cpap diagnostic sleep study after surgery to evaluate the status of the OSA. Some people even get cured and don't need pap. (I only know a few but it does happen.) More commonly the repeat sleep study shows a reduction in AHI and later a repeat pap titration will usually show decreased need for pap pressure making pap much easier to tolerate. Then after getting used to the new pressure, if the daytime sleepiness persists, an MSLT is done to look for narcolepsy or idiopathic hypersomnia (sleepiness of unknown cause). Many people with poorly treated OSA feel better on stimulants. I'm surprised your insurance company agreed to pay for the stimulants using a pre-upper airway surgical MSLT.

It sounds like the combination of the stimulants and your new found toleration of BiPAP has got you all feeling wide awake. I'm glad you feel better and hope your new regimen continues to work well. Good Luck.

It's pretty easy to tell if you don't need Nuvigil anymore. If I don't take it, by 9 or 10 AM I am falling asleep! No problems with insomnia, either.

Big Daddy, my sleep doctor recommended surgery even though I was compliant with cpap. I still felt extremely tired during the day, and they suggested the two (apnea and EDS) might not be related. I talked with a surgeon who also said the daytime sleepiness and the OSA were probably independent of each other. Post surgery, it feels like the bipap is more comfortable and when I wake up in the morning, I feel as if I had a good night sleep. I questioned both my doctors about the relationship of OSA and narcolepsy and neither said one is definitely related to the other. I have an appointment scheduled with my sleep doctor in June - what questions do you think I should ask regarding the narcolepsy, surgery, etc. Thanks for all your input (and everyone else). It has been really helpful.

bfoot623 wrote:I still felt extremely tired during the day, and they suggested the two (apnea and EDS) might not be related.

That's true. It's possible they are not related as the differential for EDS is extremely broad.

I talked with a surgeon who also said the daytime sleepiness and the OSA were probably independent of each other.

I don't see how anyone could ever say that given that it's possible to have EDS caused by apnea that remains residual to treatment.

Post surgery, it feels like the bipap is more comfortable and when I wake up in the morning, I feel as if I had a good night sleep.

Did you feel rested in the morning after surgery BEFORE you started taking Nuvigil (or alternatively, before the time in the day when you ingest the Nuvigil)? If so, your being refreshed in the morning is an improvement since your surgery and has nothing to do with the Nuvigil. Nuvigil will not make you feel alert the next day before you take the next dose.

I questioned both my doctors about the relationship of OSA and narcolepsy and neither said one is definitely related to the other.

They can be co-morbid (i.e., you can have both). It is not possible to have OSA and Idiopathic Hypersomnia.

I have an appointment scheduled with my sleep doctor in June - what questions do you think I should ask regarding the narcolepsy, surgery, etc. Thanks for all your input (and everyone else). It has been really helpful.

It is not at all complicated to distinguish the effects of Nuvigil vs. surgery, as the former is a short-acting medication that you could choose not to take and what you would be left with is the effects of the surgery. However, going off stimulants can cause some rebound sleepiness and so you shouldn't judge how you feel based on a few days of being off. I am pretty sure this could also be true of other wake-promoting agents, such as Nuvigil, so if you really want to be sure, don't judge by the first several days off.

What questions do you WANT the answers to? If you want to know if surgery caused your improvement or if it's Nuvigil, go off the Nuvigil. If you want to know if the Nuvigil is causing the insomnia then the answer is yes, it can be, and you will know this also by going off the Nuvigil (but it sounds like this is less of a problem now).

If I were you, I would want to know whether the sleep study done the night before the MSLT showed more than 6.5 hours of sleep and was done on CPAP and showed evidence of very well treated SDB and no other abnormalities (and I would look at the report myself). If either of those criteria were not met, I would demand that my doctor retract the narcolepsy diagnosis in light of the potential consequences of such a diagnosis, particularly in some states.

Bfoot,
Well I agree. You can have OSA and narcolepsy OR properly treated OSA and residual Idiopathic hypersomnia (unresolved sleepiness). Both can be treated with stimulants.
These are the symptoms of narcolepsy....
Sleep paralysis-awakening from sleep temporarily unable to move
Cataplexy-fall,faint or get weak when emotional,surprised,angry,afraid etc.
Vivid dreams that are confused with reality, disruptive nightmares
Vivid dreams just after falling asleep
Vivid dreams during a short nap (the reason for the MSLT)
Falling asleep inappropriately (called daytime intrusions of sleep) even after a full night of sleep.

MSLT is diagnostic for Narcolepsy if after a good nights sleep you have REM in 2 or more naps out of 5.

These are some of the symptoms of untreated OSA, excessive daytime sleepiness, falling asleep inappropriately. A person with OSA may also have dreams during a short nap which is why MSLT is only useful with treated OSA. You eliminate the OSA and then diagnose the narcolepsy.

Narcolpesy and Idiopathic hypersomnia are treated the same so why separate the two conditions? The main problem is if you put a person with untreated OSA on stimulants he will feel somewhat better but will continue to suffer the adverse health affect of oxygen deprevation and choking and gasping while sleeping. So his sleepiness may be controlled but his health risks remain elevated.

In your case you note you were compliant with BiPAP and had an an effective AHI of 3 from a very severe 98. So I agree, if your are compliant I would be surprised at your continued fatigue and tiredness. (98s usually feel great when you get them to 3.) So after looking at your BiPAP titration study and concluding it was well done (low AHI, lots of supine REM) and then viewing an extended compliance report, lets say 30 days with >6hrs of use 7 days week (excluding illness etc.) a trial of stimulants would be appropriate. So far so good. Depending on your insurance you may not even need the MSLT. Just wear your BiPAP and take these meds and we'll see how you feel.

But you went one step further. I missed this in your first post...You had an MSLT with 4 out of 5 REM naps...that's Narcolepsy (assuming your Bipap is well titrated and you wore it during the 6-7hrs of sleep before your MSLT). So now you have more than confirmed the need for a stimulant trial. So just wear your BiPAP and take these meds and we'll see how you feel.

You've just been diagnosed with Narcolepsy so the big question is why have risky/painful/invasive surgery if your daytime sleepiness is from Narcolepsy and not a BiPAP toleration problem? Well ordinarily you wouldn't as I said before...just wear your BiPAP and take these meds and we'll see how you feel.

Having Narcolepsy is no reason not to have surgery for OSA but you might try the meds, gauge it's effectiveness and then evaluate the need for invasive surgery. You might have felt great without the surgery, we'll never know 'cause you went and did it...

You had the upper airway surgery. (you got guts my friend). Now I would expect you probably lowered your AHI and may not need as much pap pressure. But you haven't even had your follow up sleep study to re-evaluate your OSA or a follow up retitration to find your new potentially lower pressure and you like your BiPAP???? That's just damn amazing. You found your wakefulness ass-backwards my friend but you found it none the less. Good for you!

So here you are...post surgical, liking your BiPAP and taking stimulants and feeling good...What do you ask your doctors now?
Do I need a diagnostic sleep study to see where my OSA is?
I'm doing well on my BiPAP now, but could I do even better with a full night of re-titration?
Might I do better on Auto BIPAP or CPAP now that I've had my surgery?
What are the long term side affects and health concerns regarding stimulant therapy?
If I get re-titrated and sleep even better on pap therapy should I be re-evaluated for Narcolepsy?

Have you had other symptoms of narcolepsy besides daytime sleepiness? If you don't, you may want to consider that last option.

I hope this helps your understanding and I hope you continue to feel so good.

Big Daddy RRT,RPSGT

Sleeping ugly, "It is not possible to have OSA and Idiopathic Hypersomnia."

My understanding is idiopathic hypersomnia is excessive sleepiness without a known cause. Your saying with OSA you can never have it? Only residual sleepiness secondary to OSA? What if your sleep study is clinically normal on pap therapy, 7.5 hours of sleep 7 days in a row, "clinically normal" sleep study the night before MSLT but you have sleep latencies of less than 5 minutes and no REM. That's not idiopathic hypersomnia?

Big Daddy RRT,RPSGT

bigdaddy raises some important questions, the most important of which is this: Do you have ANY symptoms of narcolepsy other than EDS? Do you have sleep attacks? Cataplexy? Sleep paralysis? I bet there are a lot of clues from the history that would suggest whether narcolepsy is a bona fide diagnosis or not (e.g., if bfoot is 60 years old and developed problems with EDS 10 years ago, I would not find a diagnosis of narcolepsy very compelling).

Another possibility is that even though the treatment eliminated your obstructive events, did it replace apneas/hypopneas with RERAs that were just as disturbing to your sleep even though they weren't detected by your machine? (No way to tell now) Narcolepsy leads to very disturbed sleep architecture. Are there clues in the sleep architecture? (Don't ask me!)

I don't know how many narcolepsy patients' symptoms could be entirely eliminated with a single Nuvigil dose of 250mg. I suppose it's possible, but my impression of the efficacy of wake-promoting agents in narcolepsy is that they can help, but people remain impaired to one degree or another.

Big Daddy RRT,RPSGT wrote:Sleeping ugly, "It is not possible to have OSA and Idiopathic Hypersomnia."

My understanding is idiopathic hypersomnia is excessive sleepiness without a known cause. Your saying with OSA you can never have it? Only residual sleepiness secondary to OSA? What if your sleep study is clinically normal on pap therapy, 7.5 hours of sleep 7 days in a row, "clinically normal" sleep study the night before MSLT but you have sleep latencies of less than 5 minutes and no REM. That's not idiopathic hypersomnia?

Big Daddy RRT,RPSGT

Technically speaking, no, I don't think what you described could be called Idiopathic CNS Hypersomnia. First, I think that once there is known apnea, any EDS can be attributed to it. So in someone with residual sleepiness secondary to OSA, the sleepiness is attributed to a known sleep disorder. "Idiopathic" by definition means without a known etiology. It is known that some people with apnea never have all their EDS eliminated even if they are well treated.

Also, even though the Idiopathic Hypersomnia diagnosis tends to be used as a wastebasket diagnosis for all those who are sleepy for whom no primary sleep disorder is found, it is supposed to describe a rare CNS disorder characterized by EDS, long sleep episodes, unrefreshing naps, etc. People with Idiopathic Hypersomnia have short sleep latencies and evidence sleepiness on the MSLT, but their sleep architecture tends to be normal.

In reality, I'm sure that the Idiopathic Hypersomnia diagnosis is carried by a heterogeneous group of misdiagnosed people, along with a few of the true Idiopathic Hypersomniacs.

This is my understanding anyway.