Does anyone have to take medication as well as use a BIPAP?

I have never tried taking sleeping pills.

My dr refused to give me sleeping pills, which I watch a doco how bad sleeping pills were for you. I take 1 1/2 Nuvigel

I use Xyrem at night with my CPAP and aderol xp during the day for the sleep attacks but I'm still tired and sleepy during the day as well. It takes time to figure out what will work best for you, everyone is different.

I just read cindylea57's complaint about how she suffers from lack of sufficient sleep even though she uses BiPap…Unfortunately, I have this exact same concern with no positive answers yet. Any suggestions ?

I'm on CPAP…and there's quite a handful of pills that I'm on…

There's Singular, Zrytec, Flonase to help with my environmental allergies. There's Lunesta which helps me stay asleep (getting to sleep usually isn't a problem, its the turning naps enough a night of sleep that is)… I'm on Ropinirole for RLS, and I'm currently on Nuvigil for getting through my day. Before the Nuvigil…I was doing the 12+ hours in bed thing and wanting more.

Also have omeprazole for GERD and pravastatin for high cholesterol. There's also various supplements, extra C, B-12, Calcium…also a biweekly shot of testosterone.

Was on Nadolol for my tremors, but doc is taking me off of that. And, I've been doing the avoid caffeine experiment…

The Dreamer.

Cindy, I use a CPAP machine and I have two meds to keep me asleep at night. One is called Baclofen (Take Two 10 mg. before bedtime) and I also take one Temazepam 30mg. that makes me sleep like a baby. I had two sleep studies and the first was without a CPAP. I stopped breathing an average of 19 times per hour and my oxygen level dropped to 70.

The second sleep study started with a CPAP machine. I have two doctors, one is a neurologist and a ther a sleep Doctor. I think the CPAP is similar to the BIPAP, but if you are tired during the day you probably need a sleep med like I do to stay asleep. If your machine has a memory stck in it, it needs to go to a Sleep Doctor to see what is going on during the night. The Teazepam is my way of staying asleep all night. The Baclofen is a muscle relaxer that helps me get to sleep but the Temazepam is the only reason I can stay asleep.

My Doctor would not give any sleeping bills, not good for your system and this has been advertised on TV about the effects it has on your liver. So I take 1 1/2 Nuvigel in the morning and a BIPAP will let you exhale I think is the difference. I have taken two sleep test by two different Dr.

cindylea and Sandy -

Jumping in with some comments and suggestions…
My phylosophy is If what you are doing is not working, change what you are doing!

First let me say, I am not a doctor, just a patient like you. I've been a bilevel user for 20 years. My therapy is now successful, but it was a struggle at first. I've learned a lot over the years by trial and error. Here are some of the things I learned the hard way…

Make sure you are under the care of a physician who is specially trained in sleep and sleep disorders. Are your treating physicians primary care or board certified in sleep medicine? Even if trained sleep doctors, you still have to have a good line of communication with them, so if they are not helping, consider changing doctors or get a second opinion from a sleep specialist.

Are you successfully using bilevel all night, every night …every time you sleep including day time naps? successful means that your pressure is adequately treating your apnea events…that your mask is well fit and not leaking…that you are using heated humidification each night.

I found early on that I was using an ill fitted mask - actually the wrong size, and did not realize it. It was not providing my bilevel use to be optimal. Once I got the right mask for MY FACE, it all gelled and worked. Do you have the right and best mask for your facial features?

Accurate machine pressure is vital. We may need one pressure for back sleeping, and another for side/stomach sleeping. I also have restless legs syndrome and so during the first hours of sleep tossed and turned a lot. My machine was preset to deliver one pressure for inhalation and then a lower pressure for exhalation. I also have allergies and some nights fought nasal congestion issues - on THOSE nights I found out the hard way I needed higher pressures AND adequate heated humidification. What works best for me is AUTO Bilevel - my machine is set with the high presure of 25 and a low of 11. The machine AUTOMATICALLY figures out what I need on a breath by breath basis - therefore assuring optimal delivery to keep my airway open ALL NIGHT LONG.

We don't know what we do when we're asleep. I always assumed that my machine was working ok, and my mask too. But I woke up not feeling refreshed and battled sleepiness during the day. It was awful. Once I got the right machine…( I use and love the ResMed S9 autobilevel with heated humidifier and CLIMATE LINE TUBING) my life turned around.

So, make SURE you have the right tools…

Also - make sure you use heated humidification every time you sleep. Most of us on bilevel use higher pressures which dries the nasal lining and airway. Humidification makes for a more comfortable sleep.

Obstructive sleep apnea and Central sleep apnea…what is your dx? I have both which is referred to as "mixed apnea". Sometimes, having a pressure too high can CAUSE central apnea episodes. Another reason why auto bilevel works well for many…this machine delivers what you need at any given breath. So it can reduce the central episodes.

Lastly - make sure you have been adequately evaluated for other sleep disorders to dx or rule them out. Narcolepsy is dx using the daytime mslt ( multiple sleep latency test) which is a day time test that records scheduled naps FOLLOWING the overnight polysomnogram. MSLT measures the time it takes to fall asleep during those naps and also records the sleep stages. A person with narcolepsy often skips sleep stages and falls asleep directly in to REM unlike the typical normal healthy sleeper who falls first in to stage 1, then 2 - 3 -4 and then REM about 90 minutes later.

So, my…there is a lot of food for thought huh? I hope this will be helpful to you as you both consider next steps. Again, consider a second opinion …make sure you are using the right tools…

Best to you …
tracy

Thank you Tracy for a wealth of knowledge. Your experience is greatly appreciated, and has definitely been instrumental in deciding my next move. Thanks for taking the time to be so thorough, as it has helped me a great deal! You are too kind!!

Sandy

You are very welcome Sandy - keep us in the loop and let us know how you are doing! I wish you the same success I have using bilevel! Life is good!
tracy

I'm sorry to add on here Tracy but I just have to because all of my married life I told my wife I could basically do anything around the house "if I had the right tools"! Oh yes, us guys love to make trips to Lowe's and Home Depot just to get more 'right tools'! LOL

I am having the Sam issue. I am on the BIPAP at night, take a sleeping pill at night, and sometimes still can't sleep. Even if I do sleep at night, I am EXHAUSTED during the day, and generally end up sleeping about ten hours of the daytime. My husband hates it as much as I do. Went to the sleep doctor, and he thought it might be my machine since it was so old, so I got a new machine, but I'm still having the same problem. He said if I had the same problem he would look at giving me something to keep me awake during the day. Oh my, my husband has just about gone through the roof!! He says that is what killed Elvis and so many others, downers to sleep, and uppers to stay awake during the day. Needless to say, he is putting his foot down and is very much against this solution. I am at a loss! I CAN'T keep sleeping my life away!! I don't know what to do. I just recently had a sleep study done because of this problem, and my pressure was changed, so it should be adequate. What do we do??

Sandy,
Please get me off the hook with my replies to Cindy instead of you!
LOL,
Peter

Peter, I don't think there is any help to be had in this situation, unfortunately. Sorry!! :-)

Sandy

" I do know that a machine set to too high a pressure will ITSELF cause interruptions and wakeups so it may just be that the machine has been set too high right from the beginning; it can be causing central apneas."
Peter

I have had 2 test from different places and they both say the same for it to be place on 17 which is I think the highest. But on my machine it has a timer which starts out low and climbs to the most in about 10 or so minutes which ever time I set it for. But I thought it was to high also but both studies said the same thing.

CindyLea, the highest is 20 so please take some comfort in that. I am not a doctor, just a patient like yourself, who is trying to 'see the forest instead of the trees' but I can and do symphathize with you (and hopefully you can symphathise with my extremely poor spelling) and I hope you can find an answer that will work for you and your husband. I have had, in addition to the Apenea, severe central nervous system lyme disease since 2007; I have seen and felt the suffering I have caused my family. I would do whatever it took to get myself as far back to what I was as possible and I have done pretty much everything within reason so I can not fault myself because I got a tick bite and did nothing about it.
I was truly fortunate to have a lyme expert neurologist only 7 miles away; an expert neurologist who taught at Yale U. and who taught sleep study to the cardiologist who subsequently became my sleep study doctor but the student just couldn't match the teacher. Have you seen a 'good' neurologist and I say good because I have friends who've seen some pretty bad ones? Could there be a co-problem? My neurologist is also treating me for hypothyroidsim (he is so far ahead of the crowd including endroctron.. no, my brain is losing it now and I can't spell anymore). Hypothyroidism is an epidemic of misdiagnosis; check it out on the web. I guess all I'm suggesting is that there may be several trees making up your forest just as there is in mine. It was the lyme that drove me under and now because of the multiple diagnoses and thearapies I am able to be here and write this. In 2007-8 I was sleeping 16-17 hours a day and I had to leave a cushy job at a university because I couldn't think anymore. I'm not back there yet and I know those days are over but yet I can be here making some suggestions to you that will hopefully bear fruit.
Now it's bed time for me ~ Haha! Don't give up!!!
Peter

Peter, I'm not married, so that must have been someone else you were talking to. I don't sleep that much and I work 2 jobs, so we are very different in our problems I think but thanks for the inf.

Oops, sorry cindylea57, it was Sandy121762 in this current thread that I should have addressed this to! Let's see, I wrote it at 8:35 PM which means 1/3 of my brain was in Repose mode;-)

I take Nuvigil and I started with 1 pill and now it takes 1 1/2 just to stay awake. What I don't understand is why I should have to take this medicine. I also wake up totally exhausted and my sleep study and I have had 2, shows that I am on the highest that my BIPAP will go and that it was that way from the start. I hate the way I feel and would rather not take anything but my Dr. will not give me something to help my sleep at night. I agree with the women who's husband put his foot down on the medication, but what do you do. I fall asleep at work talking to someone and when I do wake up they look at me so strange, I feel like a freak.
Cindy

Well, what I do is take a medication called Nuvigil; the Rx came from the sleep study doctor but now it's from my neurologist because he is my new sleep study doctor.

This medicine is NOT speed! NOT an 'upper' or anything like a so-called recreational drug. In fact, in my case, when my CPAP machine broke and it took almost four months to get a replacement, I stopped taking the Nuvigil because without the sleep, it just didn't work. However, WITH sleep it works great; in fact it works so great that I bought a pill cutter and I take a half dose each morning. I too had the question about why the machine wasn't enough and I don't know why. I can perhaps speculate that I may need a different machine like a bi-pap or a:
http://www.resmed.com/us/products/s9_vpap_ada...
and in fact I have a Rx for that exact machine but since Medicare won't pay for it and I can't afford to buy it out of pocket, I make the most of what is available. With the Rx for the current dose of Nuvigil and a 90 day supply, cutting them in half becomes a half year supply and I can afford that because I can't afford sleeping the rest of my life away.

Just my 2 cents,
Pahoo

I take Nuvigil and I started with 1 pill and now it takes 1 1/2 just to stay awake. What I don't understand is why I should have to take this medicine. I also wake up totally exhausted and my sleep study and I have had 2, shows that I am on the highest that my BIPAP will go and that it was that way from the start. I hate the way I feel and would rather not take anything but my Dr. will not give me something to help my sleep at night. I agree with the women who's husband put his foot down on the medication, but what do you do. I fall asleep at work talking to someone and when I do wake up they look at me so strange, I feel like a freak.
Cindy

CindyLea, were you tested for Narcolepsy? Do you see a good, competent neurologist? I myself have had interactions with two 'sleep' doctors and both were less than average as far as doctors go, in my opinion; that's why I'm using my neurologist, who I have absolute trust in; the man is incredible … I've never been so impressed with a doctor.
I don't agree with the woman or her husband but that is just a point of view. There is a VERY long thread here that was begun by Tracy and it's titled something like 'If what you have doesn't work' or something like that. It would be a good read for you.
From what you wrote above, there is a big difference between us and if you are not narcoleptic, then something else is wrong; either the machine or something as of yet undiagnosed. I do know that a machine set to too high a pressure will ITSELF cause interruptions and wakeups so it may just be that the machine has been set too high right from the beginning; it can be causing central apneas.
Peter

Never heard of narcolepsy and I don't guess I was tested for it, it has not come up in any conversation that my Dr. and I have had.

Oh yes that is what the Dr. called it and that was why I use a BIPAP i assume. It really does not matter what it is called because it is all a sleep apnea problems. To me that is getting into a bunch of details I really don't care about, and my thyroids were checked at the beginning. I think you are over thinking the problem here, it to me is a sleeping disorder plain and simple. So let's keep it simply as far as I'm concerned. So what is the difference between narcolepsy and sleep apnea? Are they not basicly a sleeping disorder?

Pahoo, I did look it up and Narcolepsy is a sleep disorder as well as sleep apnea!!! You really had me confused there for a minute!!! LOL

Cindy,
There is some obvious, major confusion going on in my mind mixing up you and Sandy. Ha! I hope you can roll with my obfuscations! So sorry:-(
Narcolepsy is a whole different thing, a neurological disorder.
Peter

No it is a sleep disorder of a different kind but it is a sleep disorder all the same!!!!

Ok I found it, and if you will go to www.nuvigil.com it states that narcolepsy is a sleep disorder just like sleep apnea. So not sure where you got your inf that they were different. You almost had me confused there for a minute. Please be careful, I get confused enough over all this stuff!!LOL

Narcolepsy and sleep apnea are both sleep disorders, but they are two totally different diagnoses. You do not treat narcolepsy with a CPAP or BIPAP machine. You need to speek with your sleep doctor or the technician where you were fitted for your mask and get the straight on them both before you really get confused. Sleep apnea is concerned with your breathing, and narcolepsy is concerned with your brain. You sleep a lot if you are narcoleptic. Anyway, I'm no dr. But you really need to get an understanding of why you are using a BIPAP machine and what sleep apnea is all about. You have it, you need to learn about it.

No Sandy, I don't really need to know all about the details that is why I pay a Doctor. I simply responded to the guy telling me that one was not a sleeping disorder and it is, he had me confused by telling me it was not a sleep disorder. I simply asked if anyone had to take medication like myself and all of a sudden he's telling me stuff and in his own words he is not a doctor. So that is how this whole stuff got out of hand. But as you stated they are both sleep disorders and mr pahoo said they were not both sleep disorders. He said that is what he was trying to tell me, no he said that one was not a sleep disorder. So you might need to straighten him out on what is the difference. Thanks

Where did I state narcoplesy "is not a sleep disorder"?

But enough of this…

Good Luck!

Your words were "narcolepsy is a whole different thing, a neurological disorder. What the site said was it is a sleep disorder, not a whole different thing!!! And since you are not a Doctor in your words I really don't think you need to tell me that something else must be wrong!!!

Sandy, you just said what I had 'tried' to say! LOL

No Pahoo you did not say that you stated that one was not a sleep disorder!!!

I said one was a neurological disorder which is not mutually exclusive with sleep disorder.

You were the one who had me confused so I had to research and it did say they were both sleep disorders!!

I believe you have received sage advice and the choice is yours to take it or not; in any event I wish you success in overcoming your illness.

P.S. I don't take sleeping pills aka 'downers' to some. If I wake up and can't fall back to sleep, I get up for a while and then return to bed. I may have had that problem because I took the Nuvigil too late in the morning; we are strongly cautioned to take it - early - in the morning.
I do apologize to Sandy for the sideways comment. It's like if your on the roof of your house and a helicopter comes to rescue you and you wave it off saying you can wait it out ~ well sometimes the flood subsides and other times you drown (once). You can't have a solution and refuse to take it and then continue to complain about the problem. Be happy you're not living 100 years ago when there was no solution .. actually make that 30 years ago!
I'm really saying that with kindness and compassion so please trust me that I'm sincere because those things do not come across in a type written format,
Peter

Peter, no offense taken. However, I apparently was not clear on my stance. I do NOT agree with my husband's viewpoint on the situation. I feel caught in the middle. My dr. wants me to take the medication, my husband has put his foot down and says NO! In the meantime, I am the one suffering! I am a strong woman, and will make the decision myself, but would prefer to have my husbands approval. Don't NEED it, but was just trying to put his viewpoint out there to see if anyone else had had to deal with anything similar, and how they handled it. Or basically to get some viewpoints on the subject of taking it vs not taking it. Thanks for your concern.

Sandy, indeed you are not alone to be caught in the middle … a truly horrible place to be! And I'd like to offer how I handled my similiar situation (NOT EASY!!!) but my brain is now fried and I have to lie down.
Sorry,
Peter (Haha, I noticed that I started signing myself Peter instead of Pahoo, a sure sign of a tumbling IQ!)

Sandy, you need to stay awake long enough to upload a picture! LOL