Replies to This Discussion

Permalink Reply by Mary Callahan on February 10, 2011 at 11:48am

Dreamer, I am new to all this as to who can see whom and who can prescribe what, but my guess is maybe you don't need to find another sleep doctor, as you said you don't have any others in the area. Maybe find a new PCP who will work with you. Just a thought. 

 

I had to find another sleep doctor as the one I was going to said I should use some sort of sleep medicine for my insomnia, but would not prescribe any. But working in NYC, I have a slew of sleep doctors to choose from. And so I found myself another one. And we are working through a list of medications for insomnia. I am currently on #4 on the list, and not sure this is the one due to side effects I don't think I can live with. Insomnia is not an easy one to help.

 

CPAP has helped with the apneas, but not with the insomnia. I am more tired now than ever before and I've been on the CPAP for over 2 months. And my guess is depending on your insurance company you might be able to self-refer, but if you need that damned referral, you will just have to push your current doctor.

 

Good luck finding another doctor of some sort to get you the help you need. 

The Dreamer said:

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?

• ▶ Reply

Permalink Reply by Gillian Bryce on February 10, 2011 at 12:49pm

Turns out that I was having a bad reaction to the meds and was told to stop immediately.  However, apparently on top of the sleep apnea, my Epstein Bar is no longer dormant, which is why I am so, so tired.  There really isn't anything that can be done.  I just have to deal with it.

Gillian Bryce said:

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 :)

• ▶ Reply

Permalink Reply by Mary Callahan on February 10, 2011 at 12:56pm

Gillian, I am so sorry to hear you have Epstein Barr, yet again. I had it twice in two years, and it was the most devastating disease I ever had to deal with. Felt dreadful, like I was dead and no one told me. Felt like cotton candy for a brain, too. Good luck in dealing with it. I found that just time and a few herbs for virus helped (like olive leaf).

Gillian Bryce said:

Turns out that I was having a bad reaction to the meds and was told to stop immediately.  However, apparently on top of the sleep apnea, my Epstein Bar is no longer dormant, which is why I am so, so tired.  There really isn't anything that can be done.  I just have to deal with it.

• ▶ Reply

Permalink Reply by SaraLynn on February 10, 2011 at 1:02pm

After being diagnosed with UARS and unsuccessfully treated with CPAP, I was put on Provigil for my excessive daytime sleepiness of unknown cause.  At the first prescribed dosage, the med made me feel "human" again; I felt great!  However, my health care provider wanted to see if I could feel even better, so she bumped my dose.  I was taking it in the morning at breakfast.  With the increased dose, I started having a panic attack consistently around 1:30 to 2:00 p.m..  So, my provider had me split the dose, resulting in a milder panic attack at 1:30 to 2:00 p.m. and a second mild panic attack at 7:30 p.m.  I ended up deciding that the Provigil was only masking my symptoms and that to improve my health, I needed a different intervention.  A mandibular advancement device was the answer to my problem.

• ▶ Reply

Permalink Reply by The Dreamer on February 10, 2011 at 7:19pm

I heard that its available as generic in Canada, but haven't been able to confirm.  Though I recall that it was interesting to learn that the Provigil and Nuvigil that is sold in the US is made in Canada by Cephalon.

 

Guess they weren't told that the government has been telling us to stay away from cheap drugs from Canada because they're inferior....

 

Some of the other (generic) drugs I'm on are made by the same Canadian company that makes the generic Provigil in Canada.

 

Rose Marie Holt said:

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

• ▶ Reply

Permalink Reply by The Dreamer on February 10, 2011 at 7:25pm

Well, I've heard from others that normal doctors only get like 5 minutes (probably an exaggeration, but its probably not much) of training on sleep disorders.  And, the fact that mine got the definition of things wrong and wouldn't listen is why I had asked to see a sleep doctor.

 

I'll probably seek out a new primary (perhaps when it warms up)  But, I think more than take a PSG and then get a prescription that is word for word copy of the recommendation paragraph off of the summary....is what I'm looking for in a doctor.

 

I want one that has answers, not more questions or nothing.

Mary Callahan said:

Dreamer, I am new to all this as to who can see whom and who can prescribe what, but my guess is maybe you don't need to find another sleep doctor, as you said you don't have any others in the area. Maybe find a new PCP who will work with you. Just a thought. 

 

I had to find another sleep doctor as the one I was going to said I should use some sort of sleep medicine for my insomnia, but would not prescribe any. But working in NYC, I have a slew of sleep doctors to choose from. And so I found myself another one. And we are working through a list of medications for insomnia. I am currently on #4 on the list, and not sure this is the one due to side effects I don't think I can live with. Insomnia is not an easy one to help.

 

CPAP has helped with the apneas, but not with the insomnia. I am more tired now than ever before and I've been on the CPAP for over 2 months. And my guess is depending on your insurance company you might be able to self-refer, but if you need that damned referral, you will just have to push your current doctor.

 

Good luck finding another doctor of some sort to get you the help you need. 

The Dreamer said:

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?

• ▶ Reply

Permalink Reply by Jay Polatnick on February 10, 2011 at 7:52pm

My brilliant Dentist, Dr. Felix Liao D.D.S. of www.wholehealthdentalcenter.com will get you further along in treating your S.A. then the majority of these arrogant M.D.'s    As a retired veteran, I admit I use CPAP just to 'play the game' with these M.D.'s protecting their turf and unable to see outside their orthodoxy.

Mary Callahan said:

Dreamer, I am new to all this as to who can see whom and who can prescribe what, but my guess is maybe you don't need to find another sleep doctor, as you said you don't have any others in the area. Maybe find a new PCP who will work with you. Just a thought. 

 

I had to find another sleep doctor as the one I was going to said I should use some sort of sleep medicine for my insomnia, but would not prescribe any. But working in NYC, I have a slew of sleep doctors to choose from. And so I found myself another one. And we are working through a list of medications for insomnia. I am currently on #4 on the list, and not sure this is the one due to side effects I don't think I can live with. Insomnia is not an easy one to help.

 

CPAP has helped with the apneas, but not with the insomnia. I am more tired now than ever before and I've been on the CPAP for over 2 months. And my guess is depending on your insurance company you might be able to self-refer, but if you need that damned referral, you will just have to push your current doctor.

 

Good luck finding another doctor of some sort to get you the help you need. 

The Dreamer said:

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?

• ▶ Reply

Permalink Reply by The Dreamer on February 10, 2011 at 7:59pm

But my Sleep Apnea is managed and I'm completely compliant...since it didn't solve the problems I was having...they need to keep looking instead of fixating on the only thing they know.

 

The result of second PSG was not only no change in my pressure, but that it recorded 0 apneas and 0 hypopneas.

 

They used words like narcolepsy and hypersomnia in it...but the recommendation says nothing about those things and the doctor doesn't know that he doesn't know what those things are.

 

I'm thinking I need to find somebody that does and get tested for those things....though I hear spinal tap is one of the tests....and, well...all I remember is that my brother had a bad experience when had one....

 

 

Jay Polatnick said:

My brilliant Dentist, Dr. Felix Liao D.D.S. of www.wholehealthdentalcenter.com will get you further along in treating your S.A. then the majority of these arrogant M.D.'s    As a retired veteran, I admit I use CPAP just to 'play the game' with these M.D.'s protecting their turf and unable to see outside their orthodoxy.

Mary Callahan said:

Dreamer, I am new to all this as to who can see whom and who can prescribe what, but my guess is maybe you don't need to find another sleep doctor, as you said you don't have any others in the area. Maybe find a new PCP who will work with you. Just a thought. 

 

I had to find another sleep doctor as the one I was going to said I should use some sort of sleep medicine for my insomnia, but would not prescribe any. But working in NYC, I have a slew of sleep doctors to choose from. And so I found myself another one. And we are working through a list of medications for insomnia. I am currently on #4 on the list, and not sure this is the one due to side effects I don't think I can live with. Insomnia is not an easy one to help.

 

CPAP has helped with the apneas, but not with the insomnia. I am more tired now than ever before and I've been on the CPAP for over 2 months. And my guess is depending on your insurance company you might be able to self-refer, but if you need that damned referral, you will just have to push your current doctor.

 

Good luck finding another doctor of some sort to get you the help you need. 

The Dreamer said:

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?

• ▶ Reply

Permalink Reply by Rose Marie Holt on February 10, 2011 at 8:38pm

If you need a test, get it. a spinal tap can have complications but the worst headache in the world followed by a blood patch is NOTHING compared to being sleepy all the time and having no life.  I would even take a case of spinal tap-induced meningitis over this.

 

Marie

The Dreamer said:

But my Sleep Apnea is managed and I'm completely compliant...since it didn't solve the problems I was having...they need to keep looking instead of fixating on the only thing they know.

 

The result of second PSG was not only no change in my pressure, but that it recorded 0 apneas and 0 hypopneas.

 

They used words like narcolepsy and hypersomnia in it...but the recommendation says nothing about those things and the doctor doesn't know that he doesn't know what those things are.

 

I'm thinking I need to find somebody that does and get tested for those things....though I hear spinal tap is one of the tests....and, well...all I remember is that my brother had a bad experience when had one....

 

 

 

• ▶ Reply

Permalink Reply by Mary Z on February 11, 2011 at 8:05am

The diagnosis for narcolepsy or hypersomnie is made of the basis of A Multiple SLeep Latency test (MSLT).  Usually on the morning after a sleep test they have you stay awake for two hours then up for 20 minutes.  The sleep Latency (how long it takes you to fall asleep) and how fast you go into REM sleep determine the difference if you have one or the other,  If you have narcolepsy you go right into REM sheep. If you have this test be prepared to entertain yourself between naps and bring food.  It's very boring. Expect a urine test that morning between the two tests.

• ▶ Reply

Permalink Reply by raymond parastino on February 11, 2011 at 2:03pm

hello it's me. I take Nuvigil.  I started taking the 225mg pill once a day and it changed my life.  I am no longer falling asleep on my feet at my job. I have had fewer absentee days and I am in better health.  I have never been able to sleep well even with the CPAP.  I am up several times a night with severe back pain from advanced spinal stenosis. I can't take sleeping pills due to the pain medication I am on.  The Nuvigil also helps with excessive fatigue from the pain meds.  I am more alert at work, also more focused with out feeling like I am wired from an amphetamine or way too many cups of coffee.  At night I seem to rest better even though I am not sleeping any longer or better than before.  I do seem to be more "aware" of myself when I try to sleep.  By this I mean I seem to be able to focus on resting better rather than focusing on my CPAP mask or worrying about all of life's problems all night.  I have been taking nuvigil for about a year and I am now cutting my dosage down to the smaller pills.  I just don't feel I need the larger dose any more. I know my results are not what you could call "usual" and you're result will certainly vary.  In a nut shell: Works for me!  I hope it works for you!

• ▶ Reply

Permalink Reply by birdshell on February 11, 2011 at 6:06pm

I take Provigil.  It helps me sometimes, but I think if I am really tired that it doesn't always help.  I can definitely nap if I am tired, despite taking it twice a day.

 

That said, we are all different.  I believe in using whatever tools are available to me, and never sleep or nap without using my CPAP.   I take a number of necessary medications and I see doctors who have my best interests at heart.   I keep them all informed about my medication regime, and would never take supplements without their approval.  There are too many interactions, and many of the "natural" remedies can be harmful in combination with prescription or OTC substances.  There is a lot to know about all of these medications, and one thing I like about my doctors is that they actually look up any interactions. 

 

I love the docs who use their available resources.  It says to me that they are being diligent.

 

Each of us must make decisions about our medical care.  We must make careful and informed decisions ourselves, while working as a part of our own medical care team. 

 

Karen

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• 3
• 4
• 5
• …
• 10
• Next ›
• Page