What I want to know is.. If sleep apnea caused our sleepiness, why are so many of us who have been using CPAP for a long time, and have been checked and know we're on the right pressure, and are having no apneas STILL SLEEPY? I'm not happy of this solution of taking speed cause the CPAP isn't helping with the tiredness. I want to know why the h*ll I'm still tired. I dislike medicating things without knowing the cause. Did that for years before I knew I had sleep apnea, and it turns out that a lot of the meds I took make sleep apnea worse.
I'm having no apneac events, and I don't feel any less tired at all. I've started a mild excercize program and I'm taking vitamins. Still tired. I don't appear to have damage to my heart. Can anyone exlpain this?
Hey, Blaaaaaaaaaaaaaaaah, there could be a lot of reasons. I must first say that I am not a doctor, but like you, I am still tired all the time even with CPAP. Before I found I had apnea, I was diagnosed with Chronic Fatigue Syndrome. I believe that my body just became so fatigued that it is going to be a loooong time before I am not chronically fatigued. My blood pressure had risen to a level I had never seen before - 159/88 - and I was told that it was probably the sleep apnea that was causing it to rise. It took four months before the blood pressure came down, and it is running about 130 or 140/69. Much better.
I have a few questions for you. What OTHER medications are you taking??? Prescribed and ones you buy yourself over the counter. I am interested to know what this is. Please let me hear from you. St. Remy
_________________ St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07
New Drug Promises to Pep You Up, but Are You Better Off With a Cup of Coffee?
By SUSAN WAGNER
Feb. 15, 2007 — - In our fast-paced, 24/7 world, with round-the-clock jobs and nonstop interruptions, the average American gets less than seven hours of sleep a night, and millions get less than six.
That's why all sleep experts agree that, as Dr. Charles Czeisler of Boston's Brigham and Women's Hospital puts it, "we are an incredibly sleepy nation."
So it's not surprising that the sales of Provigil -- the first prescription drug to treat excessive sleepiness -- are exploding.
The drug brought in $800 million last year. Financial analyst Eric Schmidt of Cowen and Co. says, at least for Wall Street, this so-called "awake pill" is a dream, because the market of sleepy people is enormous.
"You're talking a Starbucks type of opportunity," he said. "The growth on this franchise is substantial. It's growing at about 30 [percent] to 40 percent annually, so this is a big drug already and it's getting bigger."
Watch the story on "20/20: Promises, Promises" Friday at 10 p.m. ET
"20/20" and ABC's chief medical correspondent Dr. Tim Johnson set out to discover whether the "awake pill" was really the wonder drug for sleepy America, or whether it was an empty promise, where profits, not patients, were the bottom line.
Off-Label Use
The Food and Drug Administration approved Provigil to treat sleepiness in only three sleep disorders: shift-work syndrome, narcolepsy and sleep apnea.
At least half -- and some say as much as 90 percent -- of Provigil's sales are for off-label use, though, or conditions not approved by the FDA.
"From a financial standpoint, we're really not that concerned with off-label use," Schmidt said. "To us, it's all about sales, and whether they come from an on-label or off-label indication, it's a dollar to [the maker of Provigil] Cephalon's top, and hopefully, bottom line."
But Dr. Jerome Kassirer, author of "On the Take: How Medicine's Complicity With Big Business Can Endanger Your Health," says it's time for drug companies to stop treating health care like it's just another business.
"This is medicine. This is not refrigerators. This is not cars," he said. "This is a profession in which we're taking care of sick people who trust us."
It's illegal for Cephalon to directly advertise off-label use of Provigil, but Kassirer says Cephalon indirectly creates off-label markets for its drug by funding continuing medical education, where doctors get paid to describe Provigil for possible off-label uses.
He showed "20/20" a journal from 2003 sponsored by Cephalon. The journal, called the Primary Care Companion, is a supplement to a well-known journal, The Journal of Clinical Psychiatry.
"It turns out that the people who write those articles have a relationship with Cephalon," Kassirer said.
'Not Real Science'?
Cephalon declined "20/20's" request for an interview about off-label use, but in fact, all seven lead authors of the journal got money from Cephalon as consultants, speakers or researchers. And these articles do not go through rigorous outside review as in a peer-reviewed journal.
Kassirer, who was editor in chief of the New England Journal of Medicine, says this is an important distinction.
"[These articles] would never make it into a really respected medical journal because it's not real science," he said. "I would say that it's a shabby marketing device for the drug by the company."
The marketing seems to be working.
"20/20" obtained a copy of a Provigil sales report. Allergists, internists, pediatricians and even dentists are prescribing the "awake pill." It's being used to treat excessive sleepiness in depression, multiple sclerosis, hyperactivity and cancer. It might lead you to think that Provigil is an amazing breakthrough, but a closer look raises questions.
Public Disclosure
Dr. Charles Czeisler, chief of sleep medicine at Brigham and Women's Hospital, was the lead investigator of the Provigil shift-work study, where one group got a placebo, and one got Provigil.
Czeisler makes it clear that he has served as a paid consultant to Cephalon. He says modafinil -- the generic name for Provigil -- "was shown to significantly improve the alertness and performance of those people."
The study shows that the "awake pill" kept participants awake 1.7 minutes longer than the placebo. A modest finding, at best. But in 2003, Czeisler appeared before the FDA on behalf of Cephalon to lobby for the approval of the drug.
Eight months later, Cephalon gave Harvard nearly $3 million to establish a chair in sleep medicine, with Czeisler as the first recipient.
"I think the public should worry about any issue of conflict of interest," Czeisler said. "And I think the first step toward resolving those issues is to make them public. That's why anytime I publish a paper there is a long list of any company with which I am interacting, including Cephalon."
It's called public disclosure, and it's in the small print at the end of Czeisler's study. But Kassirer says disclosure is a weak safeguard for the public: a watchdog with no teeth.
"Disclosure is not an ideal solution," he said. "The problem with disclosure is you just don't know what to do about it. A better solution is to have plenty of people evaluating clinical information who are not conflicted."
The Caffeine Comparison
"20/20" set out to discover how well Provigil worked when the studies were not funded by Cephalon.
That led us to the sleep labs of the U.S. Army. Brain scientist Nancy Wesensten studies drugs to help sleep-deprived soldiers stay awake and alert. She didn't just compare Provigil to a placebo, she compared it to America's No. 1 selling "awake drug": caffeine.
"We knew that caffeine was an effective means for sustaining performance during sleep loss," she said. "But we are always looking for other compounds that might be an improvement on caffeine, so when modafinil came along we wanted to compare modafinil to caffeine."
Wesensten compared Provigil to caffeine in terms of how well the soldiers performed on tests and how alert they were, and she also looked at side effects. The result?
"In our hands, at the dosages we tested, modafinil did not work any better than caffeine," she said.
In fact, the Army found that Provigil worked no better than the amount of caffeine you received in a big cup of Starbucks coffee. But soldiers on the battlefield don't get their caffeine in a cup of coffee, they use caffeine gum for low doses across many hours.
Whether you're getting your kick from a pill or a cup of coffee, at the end of the day, all the experts say the best answer for sleepiness is the oldest one. As Wesensten puts it:
"The ultimate cure is sleep. Nothing replaces sleep."
Cephalon issued a response to ABC's coverage of this story:
Although caffeine may well provide a needed boost for tired soldiers working overtime, PROVIGIL is not a replacement for sleep and is not intended to treat mere sleep deprivation.
Cephalon has studied PROVIGIL in sleep disorders and other serious medical conditions. Caffeine is not the treatment of choice for any of these more serious disorders.
There is tremendous interest from the medical community to explore the potential of PROVIGIL to help patients. We believe it is important that doctors have a complete understanding of all relevant scientific and medical information so that they can make independent and well-informed decisions on behalf of their patients.
Cephalon supports independent, accredited, continuing medical education programs that make this independent scientific exchange possible, but we do not control their content. In fact, these kinds of programs are not promotional and are permitted by the FDA regulations.
In light of that article, I guess my question would be is Provigil more effective when used to treat sleepiness related to an actual condition, like SA or CSA, as opposed to just plain ol' sleep deprivation, like what the Army is using it for? Because there are ALOT of people who swear by it, and say that its changed their lives.... I don't think placebo or psychosomatics could be responsible for that. Could this be a case of bashing the drug companies for making a buck?
And if the research is valid, and Provigil is actually over-rated, is there anything else on the market that works?
_________________ ---Sherri---
ResMed VPap Adapt SV with heated humidifer
ResMed Ultra Mirage II Nasal Mask
Hosehead since 1/17/06 - "Adapter" since 1/28/07
Tonsillectomy/Septoplasty/Turbinatectomy 1/16/08 = AHI 6, "ALMOST" Normal!!
When I first tried Provigil several months ago, I just had a few samples from the doc and Provigil worked great. I felt completely normal. It was expensive though, a premium co-pay amount. So I tried generic Adderall for a couple of months but it just kept me awake and didn't really relieve me of fatigue. I just felt tired but speedy enough to get through the day. Now I've gone back to the Provigil and I'm not getting the same results, it's effects are the same as Adderall and I have to take much more of it. I read in some online forum (crazymeds.org I think) that some users who stop taking Provigil and restart can find that it doesn't work as well the second time around. I would love to have the same effect now as I did the first go around with Provigil. I also found that I can get it via mail order from Walgreen's and get a six month supply for $80 co-pay.
But for alternatives I think you have Adderall or Phentermine, or a lot of coffee.
Be very careful. Juggling medication, particularly with high BP can be dangerous. There is also the added problem that Provigil does absolutely nothing for your sleep apnoea.....it is merely a stimulant.
I'm not a betting person, but I think the odds are quite short that your high BP is being caused by non treatment of the OSA, or a combination of that and Provigil.
Your doctor is really doing you no favours, as he is merely trying to treat a symptom...........not the problem.
Daniel.
Hi, Daniel! Glad to see you're still here posting.
You're right...my doctor is trying to treat my symptom but, to his credit, he gave me the prescription with a lot of warnings and reservations.
The thing is, we've tried treating the problem and it only makes it worse. I'm hanging in there waiting for new treatment options and trying to find ways to deal with the symptoms in the meantime.
I asked the doc recently if he has a guess as to why my bp is high. I thought maybe I needed to start doing something I'm not doing, or stop doing something I am. He said that some people just have a tendency to develop it, or it could be the sleep apnea.
In light of that article, I guess my question would be is Provigil more effective when used to treat sleepiness related to an actual condition, like SA or CSA, as opposed to just plain ol' sleep deprivation, like what the Army is using it for? Because there are ALOT of people who swear by it, and say that its changed their lives.... I don't think placebo or psychosomatics could be responsible for that. Could this be a case of bashing the drug companies for making a buck?
And if the research is valid, and Provigil is actually over-rated, is there anything else on the market that works?
It really doesn't matter if there is a "condition" or not. It is used to treat excessive sleepiness regardless of the cause. What 20/20 was saying was the main Dr claiming to have done all these studies was paid by Cephlon to do the studies. Now if your being paid by the company to do the study for their drug, just how scientific do you think that study is going to be? They even admit it kept people awake 1.7 minutes longer than coffee. Not a big difference.
I take it but have no trouble going to sleep at night and it often doesn't keep me from napping. I think it is hugely over priced and they are raping everyone that is being prescribed the drug and their insurance company if they have it. They are also paying doctors to prescribe it for conditions not approved by the FDA. I don't know if it is bashing as much as exposing the greed and lack of ethics. And that extends to the doctors accepting the payment also.
I have used Provigil for 10 yrs. and I have apnea.I love my provigil It is non addicting because the doctor told me to stop taking it all at once.There were no side affects.One thing I liked about provigil is I didn.t feel like I was on anything I just felt alert..I will probably start taking it again only a half a pill,I feel tired later in the day.Hope this helps.
Well, I called and told my sleep doctor I wanted to try it, and they called in a script for me.....but now the pharmacy says I need a doctor's authorization for it. So, from what I understand, the doctor's office has to call my insurance company to get an approval for it, and I hope this doesn't turn into a huge hassle. Anybody have any experience with this?
_________________ ---Sherri---
ResMed VPap Adapt SV with heated humidifer
ResMed Ultra Mirage II Nasal Mask
Hosehead since 1/17/06 - "Adapter" since 1/28/07
Tonsillectomy/Septoplasty/Turbinatectomy 1/16/08 = AHI 6, "ALMOST" Normal!!
Fri Mar 02, 2007 3:51 pm
billie
Joined: 29 Dec 2006
Posts: 171
Location: freeville, USA
I have just finished my 11 week on cpap and slept from 400pm until830am.this morning..which I have not done since my parting days a very long time ago........do you people suffer from depression anxiety also....I have a hard time thinking that I am so tired and some pill is going to fix that....what happens to the tiredness ......don't you have to sleep to fix it for real.....I do feel the same that what is the cpap doing if I am still so tired....I started the cpap and have used it everyday.... I had to or I thought I was going to die...I was so tired.....now I have to check in the night to make sure I have it on because I don't even feel it any more...I've been lucky i haven't had many problems with it .....the first 3 weeks I had a problem with the nose pillow piece leaking I played with it all night long until I got smart and changed it to a new one and I haven't had any problems sense....what does this have to do with the pill???? Why doesn't the cpap work????? or why don't we have a better explanation on what the cpap is doing for us to us and what to expect...they told me nothing at the drs
Well, I called and told my sleep doctor I wanted to try it, and they called in a script for me.....but now the pharmacy says I need a doctor's authorization for it. So, from what I understand, the doctor's office has to call my insurance company to get an approval for it, and I hope this doesn't turn into a huge hassle. Anybody have any experience with this?
This sounds like your insurance wants a pre-authorization. Mine required it too. My doctor's office communicated with the insurance company and stated their reason for my needing Provigil. That's all there was to it and the script was filled within a few days. I had to get a pre-auth for Adderall too.
Yep, called the doctor's office to make sure they got the form from the insurance company, and she promised me they'd get to work on it as soon as possible. Hopefully they won't take too long with it. What irritates me sometimes is the way none of these people feel any sense of urgency about this stuff at all because they don't know how it feels.
_________________ ---Sherri---
ResMed VPap Adapt SV with heated humidifer
ResMed Ultra Mirage II Nasal Mask
Hosehead since 1/17/06 - "Adapter" since 1/28/07
Tonsillectomy/Septoplasty/Turbinatectomy 1/16/08 = AHI 6, "ALMOST" Normal!!
I'm quite irritated I missed 20/20's "Promises, Promises" re: Provigil. I cannot find any podcasts or video's of that part of the episode. I appreciate you talking about this topic!
About using Provigil for Off-Label Use:
I'm on 200mg of Provigil daily for a mild case of ADD w/o hyperactivity. I have to say it is awesome! I love this medicine! It helps me wake up, be really focused, be more productive and has even helped my memory! I'd recommend this drug any day over other suggested scary ADD drugs!
I was on Concerta for two years. It worked really well for me in a very positive way for about 20-22mo. Towards the end, something went drastically wrong, FOR NO APPARENT REASON! The end result was NOT good!!! It really did BAD things to me, psychologically! Once I figured out why I thought I was all of a sudden feeling different and why I felt angry a lot, I contacted my doctor ASAP. With the help of my doctor and no history of mental illness, I IMMEDIATELY STOPPED TAKING CONCERTA!
Two years later, I'm FINALLY feeling better and am my normal happy-go-lucky self. (Concerta has recently been linked to severe depression, psychosis, killings, mood swings, memory-loss, thoughts of abuse against others and animals, etc!) Thanks to Provigil, I'm living the life I've always imagined!!! I'm alert and focused enough to enjoy my recent successes in life!
Yes, Provigil IS expensive without insurance! I've done my price shopping and found out that with Walgreen's "W Card" it's less expensive than Sam's Club, CostCo, CVS/Sav-on, Cub Foods Pharmacy, Snyder Drug, etc. After using my "W Card" it was about $250 for 30 tablets.
I used to drink about 5-8 cans of Mountain Dew per day. The amount of caffeine per 12oz can is 55 mg.
55mg x 5 cans = 275mg
This is more "caffeine" than the 200mg of Provigil. Its my personal opinion that this medication works better than the caffeine they are referring to. I've pretty much stopped drinking caffeine (except my 1 nightly can or bottle) and feel a lot better!
Is there anyone who's on it and gets headaches about 8-12 hrs after taking it?
If so, here's what I've learned:
1. If I set my alarm 2 hrs before I need to actually get up (about 4:45am) and get ready for work to take it with milk (goes down easier) and will wake me up when it starts working (typically about 6:30-7am).
2. I drink a 12 oz can or 20oz bottle of Mountain Dew or something else with caffeine in it about 2 hrs before it wears off (about 5pm or 6pm) for the day and I DON'T GET A HEADACHE! (My dose of Provigil lasts about 12hrs, if not longer sometimes.)
Picked up my first prescription for Provigil today.....get to take my first one tomorrow morning.....any tips, advice, suggestions, or comments? I have high hopes.....
_________________ ---Sherri---
ResMed VPap Adapt SV with heated humidifer
ResMed Ultra Mirage II Nasal Mask
Hosehead since 1/17/06 - "Adapter" since 1/28/07
Tonsillectomy/Septoplasty/Turbinatectomy 1/16/08 = AHI 6, "ALMOST" Normal!!
My insurance company charges the same co-pay whether I get 100mg or 200mg tablets. So if you're taking 100mg tabs see if you can get a script for 200mg tabs and cut them in half. My doc doesn't have any problem doing this for me. But now I'm taking 200mg once or twice a day so the savings doesn't help anymore but it did for awhile.
_________________ A Quality Day Begins With A Quality Night
I really disagree with they said about Provigil being the same as drinking coffee. I use Provigil and was off it for a while and coffee did not help much. I always felt tired and fatigued even if I drank 5 or 6 cups of coffee. I could take 100 to 200mg of Provigil and I feel alert and focused. That report seemed very one sided.
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I cannot find any podcasts or video's of that part of the episode. 
Once I figured out why I thought I was all of a sudden feeling different and why I felt angry a lot, I contacted my doctor ASAP. With the help of my doctor and no history of mental illness, I IMMEDIATELY STOPPED TAKING CONCERTA!
