Replies to This Discussion

Permalink Reply by Mary Z on January 17, 2011 at 9:40am

I've never felt stoned on Nuvigil at 250 mg or Provigil at 200 mg/ day.  I'd give it a day or two to see if that side effect wore off.

Of course if you're not capable of operating heavy machinery and don't think you can drive I would stop it and maybe try again on the weekend when you didn't need to drive.

Mary Z.

Gillian Bryce said:

I was just prescribed Nuvigil and have started out with a 1/2 of a 150mg tablet to start.  I am feeling kind of stoned.  Has that happened to anyone else?

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Permalink Reply by Mary Callahan on January 17, 2011 at 10:51am

I take both NADH, acetyl L-Carnitine and high doses of Vitamin C, and I am still exhausted. If it weren't for the supplements I probably would be laying flat. But unfortunately sometimes supplements just aren't enough. If my exhaustion keeps up, I think I will be asking for a script to help me stay awake. And I am not one to take any meds if I can help it, I just want to feel alive. 
Jay Polatnick said:

Sorry to see that everyone is 'buying in' so easily to Pharmaceutical solutions to fatigue. They are flawed beyond belief, let alone the long-term side-effects to your physiology. Honestly, I feel your pain and frustrating. Have you experimented at all with a natural supplement called 'NADH' ? More information and genuine research can be found at www.nadh.com
There are also some studies, although less convincing, on Acetyl L-Carnitine. High doses of Vitamin C for tired adrenals is important as well. Best Regards, Jay

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Permalink Reply by Mary Z on January 17, 2011 at 11:55am

Mary, some people never get over the excessive daytime sleepiness in spite of successful therapy.

Mary Z.

Mary Callahan said:

I take both NADH, acetyl L-Carnitine and high doses of Vitamin C, and I am still exhausted. If it weren't for the supplements I probably would be laying flat. But unfortunately sometimes supplements just aren't enough. If my exhaustion keeps up, I think I will be asking for a script to help me stay awake. And I am not one to take any meds if I can help it, I just want to feel alive. 
Jay Polatnick said:

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Permalink Reply by Gillian Bryce on January 17, 2011 at 12:42pm

I am so tired of being sleepy all the time.  I hope this works :)

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Permalink Reply by Jay Polatnick on January 17, 2011 at 1:01pm

Consider the work Dr. Steven Park, MD and his book 'Sleep Interrupted'.

 

I'm convinced for many that the CPAP route is a dead-end.  I for one and one of those patients and have

decided to get to the root of the problem.   Nuvigil, Provigil, Schmoovigil......all dead ends in my layman's opinion

 

Best Regards

 

Gillian Bryce said:

I am so tired of being sleepy all the time.  I hope this works :)

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Permalink Reply by Jay Polatnick on January 17, 2011 at 2:01pm

Mary,

           I highly recommend you consider the work of Dr. Steven Park and his book 'Sleep Interrupted'.   The most exhaustive (good word) and progressive thinking book on Sleep Apnea, it's causes, ramifications, and treatments.  Mainstream sleep doctors 'just don't get it' and believe that CPAP and meds are the be all and end all.  It's actually quite tragic.  Also, consider ensuring your body is more alkaline.  A good nutritionist can help you with this.

 

Regards

Mary Callahan said:

I take both NADH, acetyl L-Carnitine and high doses of Vitamin C, and I am still exhausted. If it weren't for the supplements I probably would be laying flat. But unfortunately sometimes supplements just aren't enough. If my exhaustion keeps up, I think I will be asking for a script to help me stay awake. And I am not one to take any meds if I can help it, I just want to feel alive. 
Jay Polatnick said:

Sorry to see that everyone is 'buying in' so easily to Pharmaceutical solutions to fatigue. They are flawed beyond belief, let alone the long-term side-effects to your physiology. Honestly, I feel your pain and frustrating. Have you experimented at all with a natural supplement called 'NADH' ? More information and genuine research can be found at www.nadh.com
There are also some studies, although less convincing, on Acetyl L-Carnitine. High doses of Vitamin C for tired adrenals is important as well. Best Regards, Jay

• ▶ Reply

Permalink Reply by Mary Callahan on January 17, 2011 at 2:27pm

I am quite familiar with Dr. Park. I have read his book, and even had an appointment with him this past November. He wanted to do multiple surgeries, and at the time I felt something that invasive and which could possibly have outcomes that could not be undone, should be used last. 

My last sleep doctor did not want to use medicine, and only rely on the cpap. But considering my presenting issues, I knew I would need some sort of aid to get me thru the night. I therefore found another sleep doctor who I have just started working with. He at least is allowing medicine at this current time to get me over the hump. He will do further testing down the road to get a better handle on what is happening with my complex issues.

I am seeing a nutritionist, and have cut out all dairy, gluten and eggs from my diet. I eat a 95% organic diet and practice excellent sleep hygiene.

All I know is that lifelong insomnia -- have had it for over 40 years -- will not be cured overnight. And there is a good likelihood that the insomnia comes from years of multiple traumas causing complex PTSD. I was in therapy  dealing with the traumas and got a good handle on them. However, I do feel that there is always residual issues that need time to heal.

I had used Xyrem for 6 years for sleep/fibro without any side effects, and slept like a log and woke refreshed. My guess is if someone needs a medicine that renders them unconscious, there is more at hand than just nutritional concerns. 

If you could suggest anything else, please feel free to do so. I am open to anything and everything, having tried most things to date. Thanks!

Jay Polatnick said:

Mary,

           I highly recommend you consider the work of Dr. Steven Park and his book 'Sleep Interrupted'.   The most exhaustive (good word) and progressive thinking book on Sleep Apnea, it's causes, ramifications, and treatments.  Mainstream sleep doctors 'just don't get it' and believe that CPAP and meds are the be all and end all.  It's actually quite tragic.  Also, consider ensuring your body is more alkaline.  A good nutritionist can help you with this.

 

Regards

Mary Callahan said:

I take both NADH, acetyl L-Carnitine and high doses of Vitamin C, and I am still exhausted. If it weren't for the supplements I probably would be laying flat. But unfortunately sometimes supplements just aren't enough. If my exhaustion keeps up, I think I will be asking for a script to help me stay awake. And I am not one to take any meds if I can help it, I just want to feel alive. 
Jay Polatnick said:

Sorry to see that everyone is 'buying in' so easily to Pharmaceutical solutions to fatigue. They are flawed beyond belief, let alone the long-term side-effects to your physiology. Honestly, I feel your pain and frustrating. Have you experimented at all with a natural supplement called 'NADH' ? More information and genuine research can be found at www.nadh.com
There are also some studies, although less convincing, on Acetyl L-Carnitine. High doses of Vitamin C for tired adrenals is important as well. Best Regards, Jay

• ▶ Reply

Permalink Reply by Gillian Bryce on January 17, 2011 at 2:42pm

Thanks Jay but I am a month away from Bariatric surgery, which should end my sleep apnea soon enough ;)

 

Jay Polatnick said:

Consider the work Dr. Steven Park, MD and his book 'Sleep Interrupted'.

 

I'm convinced for many that the CPAP route is a dead-end.  I for one and one of those patients and have

decided to get to the root of the problem.   Nuvigil, Provigil, Schmoovigil......all dead ends in my layman's opinion

 

Best Regards

 

Gillian Bryce said:

I am so tired of being sleepy all the time.  I hope this works :)

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Permalink Reply by Ron Sowell on February 10, 2011 at 10:15am

What doctors do is give meds.  What they don't usually do is check as to WHY you are so sleepy.  It may not be a result of sleep apnea (and if it is and you are on your CPAP regularly, you shouldn't have a sleepiness problem from it. ) My doctor did a blood test and found I was deficient in Vitamin D!  I am sure I am also deficient in others too, but when he put me on a Vitamin D regimen I felt much better.  Don't just go buy Vitamin D though.  Have your doctor check you for it - and if that's a problem try what he suggests as a dosage.  Don't try to diagnose yourself - some vitamins can be harmful if you take too much.  WHY, oh WHY do some doctors just think about what pill to give you rather than trying to find out what is WRONG!!!!  Don't get me started either.  June (Ron's wife)

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Permalink Reply by Rose Marie Holt on February 10, 2011 at 10:22am

Provigil didnt work so well for me. It sometimes worked but I would be awake & could concentrate OK but sleepy - miserable.  I tried NuVigil and was treated to paranoid delusions and a panic attack - which made no sense but that's what happened.  It is just supposed to be one (the longer acting) of the two molecular components of ProVigil so that was weird.  ProVigil had too LONG of a half life for me when it worked so the idea was lame to begin with.  When I HAVE to be alert I will pop the ProVigil until I cant shut my eyes but I do feel miserable.  I hear jet fighters take it like popcorn.  Probablycollege students too.

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Permalink Reply by The Dreamer on February 10, 2011 at 10:36am

I'm currently on Provigil, 200mg twice a day (since July 2010)  The price recently went up from $383/month to $409/month.  That's my 35% co-insurance for preferred brand drugs.  Nuvigil is non-preferred so I'd have to pay 60% of its cost....though it would be cheaper, though there is no annual out-of-pocket maximum for non-preferred.  Before Provigil, reaching the annual max wasn't something I ever thought about....

 

I want to find out why I'm still having all these problems.  I pushed and got another sleep study (Dec 2, 2010)...but no change in pressure or recommendation.  Though they seem only interested in sleep apnea and that.  They noted other issues and said stuff, but doctor doesn't seem to care.

 

Like I've complained of insomnia (waking up during the night and having trouble getting back to sleep)...the recent PSG noted this.  But, the 'sleep doctor' said because my cpap compliance report says I use my cpap all night, he doesn't believe me when I say that I'm waking up during the night.

 

Told him all the compliance reports says is that the machine is on, and I'm wearing it.  Not whether I'm asleep or awake.  But, he ignored me.

 

I wonder how you report a doctor that claims to be board certified in sleep medicine who says something stupid like that?

 

I want to know why CPAP didn't solve the problems (inc. EDS) that I was having before CPAP.  But, neither PCP or sleep doctor seem capable of going beyond sleep apnea.

 

I know I keep talking about finding a new doctor... guess someday I will.

 

The Provigil isn't as effective as it was when I started..and the drug holidays are extra miserable.  But, it would likely take a different doctor to get Nuvigil....assuming that's the direction I have to go with. 

 

At last appointment sleep doc had said he might refer me to Stanford sleep center, but seems he's not going to follow through...and I don't want to wait until my next appointment in July to grill him.  Can't call him....can only leave voicemail, he only works 4 afternoons a week....but he's the only sleep doc listed in the area.

 

Wonder if I can self-refer myself to Stanford?

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Permalink Reply by Rose Marie Holt on February 10, 2011 at 10:47am

It sucks that ProVigil hasnt gone generic with NuVigil on the market.

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