cpap therapy versus oral device

[cpaped]

hi there, folks! Greetings from Brazil! I mean, Bra..ZZZzz..zzz..z...ill!

I'm kinda new to this forum, I've read a lot of information here for the last 3 months but haven't contributed much yet (sorry about that).

After all the reading, internet research, talking to a sleep doctor, having a sleep study + mlst, I still have a couple of questions (and worries) and hope some of you guys are willing to shed some light and share your thoughts, personal experience or anything that could help me understand the situation and all available options.

So let me introduce you to my sleepnasty: for the last 2 years I've been feeling sleepy during the day, felt like my bedtime was not as refreshing and invigorating as it used to be. During that time I also started snoring (live on my own, so first noticed it because of the frequent sore throat and dry mouth in the morning).

Things slowly degraded to a point that nowadays I feel very sleepy most of the time. I try not to take naps during the day, but naps seem to like me! They haunt me and thing is my life became bed-oriented, nap-driven, and I have obsessive thoughts about sleeping on a nice and warm bed thoughout the day. I've been fighting this urgency to sleep but it feels like I'm gonna lose the battle eventually.

That might sound funny, but you guys know well how messy one's life can be once you feel sleepy all the time. No desire to go to the gym, memory issues, irritability, and my list goes on. So I finally stepped up and decided to go see a doctor.

Facts are: she asked me to go on a sleep study two months ago, and it showed I have a mild apnea (AHI about 8, most of it caused by hypopnea - not apnea - events). Only had 2 apneas the whole night. Half of the night I sleept on my own, snored a lot and had almost 100% of the hypopnea events (and the 2 apneas). The other half I slept with a cpap (and, to be honest, I didn't like it at all! I felt suffocating, I woke up as if I hadn't slept at all, but at the same time, no snore and no hypopneas during that period as well! Like... magic!)

The low AHI (about made my doctor puzzled (she said it didn't match the amount of daytime sleepness I described), so she asked me to perform another study: the MSLT. I Did it last month and loved it, lots of naps thoughout the day (think about heaven-on-earth), I slept on all of the 5 opportunities given! The results: 5,7 minutes sleep latency (severe sleep deprivation?) and went on REM on 2 out of the 5 naps, so the report says I either have excessive daytime sleepness (no surprise) or narcolepsy.

After researching about narcolepsy, I find it hard to believe on it since I don't seem to fit the narcolepsy pattern (cataplexy, allucination and all of that), so I think I'd stick with the excessive daytime sleepness prognosis.

Now, I'm just about to return to the doctor and I'm afraid she might suggest me (should I say force me?) to go on cpap therapy for the snore and the mild apnea (not sure what she will suggest for the excessive daytime sleep anyways).

The thing is: cpap's are devilish and shamelessly expensive here in Brazil (about 1.5K-2K for a good set! good Lord!) and from what I've learned on this forum, cpap therapy is not an easy one to be fully complaint to. I'm sure the cpap therapy would be of much help on the snore stuff but not so sure on how much helpfull it'd be for the apnea itself.

So the question is: should I fight my doctor and ask her for alternatives if she tries to force me to go on a cpap therapy, or should I accept being cpaped for life?

today while searching the internet I found a custom-made "oral device" or "oral appliance" that you wear while sleeping. It seems to help on the snore and mild apnea and it made me hopeful (not sure how much it costs but I think it might be less expensive than a cpap).

What do you guys think? Do you think a custom-made oral device would be a good alternative to cpap in my specific case?

regards,
Fábio (not the italian guy from TV).

[LoQ]

Hi, Fábio. Oral devices seem to work for a few people, but I think the vast majority of people who have been diagnosed with OSA think only CPAP therapy will work.

As for whether you should oppose your doctor about cpap therapy or not, only you can decide that, but what I have always done with my doctors is try their solution first. Then if that doesn't work, I go back and tell them I need something different. Guess what. 99% of the time the doctor's solution works. I have a number of people asking me for advice about things in which I have expertise, and it kind of bugs me when they keep rejecting the solutions I offer, so I don't want to do the same thing to my doctor. I at least want my doctor to know that I gave his solution a fair trial.

I think you may have a misunderstanding about compliance with CPAP therapy. My observation is that people who commit themselves to making it work don't seem to have too much trouble with compliance. The people who seem to have trouble with compliance are the ones who don't work hard at making it work or who expect it to be smooth sailing. I think most people will tell you it isn't easy to get it to work. You have to be tenacious. It was months before I had a night of really restorative sleep on CPAP, but I used it every night until then, anyway. I would work on the problem consistently, reading, trying to figure out how to make it work. I'm still working on solving problems as I don't think I'm getting as much from the therapy yet as I'd like.

But why don't you wait and see what the doctor says? She may treat you for just narcolepsy. You may be worried about nothing here.

Those are just my thoughts, for what they are worth. Take whatever helps you and leave the rest.

[cpaped]

thanks for taking the time to reply. I agree with you partially, sometimes I have the impression that doctors will offer whatever is easier for them. First time I went to the doctor, she was very clear: she's all about cpap for the vast majority of cases. That sounded a little biased for me (and a little confortable on her part). Why not stress other alternatives before jumping on cpap (which is expensive and not very easy to adapt to)?

I mean, maybe you are overkilling suggesting a cpap for someone that's got only snore and very mild apnea (my thoughts). I'm pretty sure cpap will solve my snore and very mild apnea, but is that necessary? I'd stick with a less expensive and less intrusive therapy (like the oral one) if that works and solve my problems. I'm very clear stating that I have very mild apnea and snore, I would'nt even argue if I had moderate or severe apnea, I'd go to the cpap straight ahead.

Anyway, you are absolutely right on one point: I need to wait and see what see is going to say. I trust her, as she is considered one of the best specialists in sleep disturbs here in Brazil. I'm just trying to find alternative solutions to discuss with her.

regard,
Fabio.

[ozij]

Your low AHI number on that one night does not mean all your nights are like that. I would go for a two-week automatic cpap trial at home if that were possible.

The AHI is not necessarily related to how bad you feel during the day.

As for an oral device: You'll find far more info about those devices and people's experience with them at http://www.talkaboutsleep.com/message-b ... m.php?f=10 - that's a whole forum dealing with dental sleep medicine.

O.

[kteague]

Hello and welcome to the forum, Fabio.

I have no experience with an oral device, so I can't speak to that. I personally couldn't use one anyway because of TMJ problems. As far as the difficulty adjusting to cpap, keep in mind that those who find their way to a website looking for help are mostly of the group who were not satisfied with their treatment. Those who had no issues (and I know a few personally) are out there living their renewed lives and have felt no need to be here researching the subject.

The other thing I want to mention is about parts of your study that were not mentioned that could make a difference. How much of the diagnostic portion was spent sleeping - enough to be representative of your whole nights at home? How much of that sleep time was spent on your back and in REM, which is considered usually to be a worst case scenario? How many of your respiratory events caused arousal (important in people with daytime sleepiness)? How low did your oxygen go during these events? Did you have any limb movments? Some people with limb movement issues find that when the limb movements are treated more apnea shows up. Just asking all these questions not for you to answer me but to know within yourself that you have looked at this from many angles.

About the MSLT... In the absence of direct signs of narcolepsy like cataplexy, my doctor wouldn't consider a narcolepsy diagnosis without having first therapeutically treated any other known sleep disorders. I just had my 3rd MSLT in 10 years. Until you are regularly getting adequate restful sleep and then take an MSLT, you won't know how much of your sleepiness is a cause and effect issue that would resolve with proper sleep.

If your apnea is indeed mild (considering the questions in paragraph 2), maybe an oral device would work for you. If you do decide to go that route, please require proof that it is solving your apneas/hypopneas. Actually, whichever route you go, it's best not to assume it's therapeutic.

Best wishes as you make your health decisions. Your doctor should be able to explain to you why they believe you are or are not a candidate for an oral device. They shouldn't mind you asking them to explain to your satisfaction why they believe cpap is your best option.

Kathy

[cpaped]

Your low AHI number on that one night does not mean all your nights are like that. I would go for a two-week automatic cpap trial at home if that were possible.

The AHI is not necessarily related to how bad you feel during the day.

As for an oral device: You'll find far more info about those devices and people's experience with them at http://www.talkaboutsleep.com/message-b ... m.php?f=10 - that's a whole forum dealing with dental sleep medicine.

O.

Ozij, your suggestion seems very reasonable to me, but I just didn't get something: is the automatic cpap machine able to check apneas and hypopnea events while I sleep? I mean, I though the cpap machine was intended to prevent apnea (and hypopnea) events to ever happen, so how will it be able to check apnea or hypopnea events during the night if it's preventing those events from happening at the same time? is it a mode that you switch on and off? like "apnea prevention mode" and "apnea detection mode"?

Anyway, if the machine can register apnea and hypopnea events, I'd stick with your suggestion. The doctor said I can find places here in São Paulo that will rent cpaps on a monthly-basis. Now sure how much it costs, but I suppose they might have an automatic one available at a higher price. I will ask my doctor what she thinks about double-checking the AHI index during a trial period.

Thank you very much for your input.

regards,
Fábio

[cpaped]

Hello and welcome to the forum, Fabio.

I have no experience with an oral device, so I can't speak to that. I personally couldn't use one anyway because of TMJ problems. As far as the difficulty adjusting to cpap, keep in mind that those who find their way to a website looking for help are mostly of the group who were not satisfied with their treatment. Those who had no issues (and I know a few personally) are out there living their renewed lives and have felt no need to be here researching the subject.

The other thing I want to mention is about parts of your study that were not mentioned that could make a difference. How much of the diagnostic portion was spent sleeping - enough to be representative of your whole nights at home? How much of that sleep time was spent on your back and in REM, which is considered usually to be a worst case scenario? How many of your respiratory events caused arousal (important in people with daytime sleepiness)? How low did your oxygen go during these events? Did you have any limb movments? Some people with limb movement issues find that when the limb movements are treated more apnea shows up. Just asking all these questions not for you to answer me but to know within yourself that you have looked at this from many angles.

About the MSLT... In the absence of direct signs of narcolepsy like cataplexy, my doctor wouldn't consider a narcolepsy diagnosis without having first therapeutically treated any other known sleep disorders. I just had my 3rd MSLT in 10 years. Until you are regularly getting adequate restful sleep and then take an MSLT, you won't know how much of your sleepiness is a cause and effect issue that would resolve with proper sleep.

If your apnea is indeed mild (considering the questions in paragraph 2), maybe an oral device would work for you. If you do decide to go that route, please require proof that it is solving your apneas/hypopneas. Actually, whichever route you go, it's best not to assume it's therapeutic.

Best wishes as you make your health decisions. Your doctor should be able to explain to you why they believe you are or are not a candidate for an oral device. They shouldn't mind you asking them to explain to your satisfaction why they believe cpap is your best option.

Kathy

Kathy, your considerations are just awesome. I agree I have focused entirely on the AHI and the MSL indexes, I will double check the report when I get home and pay a bit more attention on items like the ones you mentioned (limb movements, arousals, time on REM, etc).

Totally agree with you and your doctor on not diagnosing narcolepsy before treating the other sleep disorders, I will keep that in mind when I return to the doctor to counter-argue if she diagnosis me as narcoleptic first hand and with no good excuse for that.

Will also try to ask her for as much of an explanation as possible on her diagnosis, but I personally find it very hard to discuss anything with a doctor without having a lot of information to support my ideas and questions. I am a computer specialist myself, but sometimes I have the impression doctors don't consider their patients capable enough of helping them to choose the therapy based not only on the doctors preferences but also on their patients own preferences (provided all options and suggestions are reasonable, of course).

Bottom line is that I don't feel much comfortable letting a doctor decide on 100% of my treatment, even if she (or he) is a specialist. I think I'm gonna feel guilty and will hold myself liable if I accept everything the doctor says and then later find out the treatment is bad, unnecessary, inefficient, more painful, more time-consuming or more expensive than it had to be. This is why I'm trying to find alternatives to the cpap therapy in first place.

Well, I have to get over it and try to find the tiny little line that divides me being conscious about my treatment options and not becoming a specialist on my own health issues. That is a blurry line, and I think I'm just too anxious about it all to see it. Anyway, thanks for the patience and consideration y'all.

[cakimmer]

I had been on a CPAP for about 7+ years when my MD suggested that I try the oral appliance. He himself could not tolerate the CPAP but found the dental device to work very well. I "went for it" and spent a FORTUNE on it -- AFTER insurance, I still ended up paying about $2000! I've tried and tried to use it. I felt it would at least be good for travel. Well, I'm back in a new CPAP with a higher setting and heated humidifier and love it! Maybe it was because I was successful with the CPAP and accustomed to how it felt? With the mouthpiece, my mouth became SO dry and night it was actually sore (like a "scalded mouth"). The dentist had shown me how to adjust it (how to change the position of my lower jaw to my upper jaw) so I played with that, no luck! I also have TMJ which hadn't really been bothering me, until I tried the mouthpiece.

Just my 2 cents! I haven't had any problems traveling with my CPAP, at least in the U.S. I haven't ventured outside of our borders but it's made it from WA state to Vegas, CA, and NYC;-)
Kim

[cpaped]

thank you for your input, Kim. Funny how some people adapt pretty well to cpap, other seem to hate it and love the oral appliance. Bad thing is that I dont think I can trial the oral device but I sure can find a cpap to try before buying. Also not sure how much a custom-made oral device costs down here, I hope is not as expensive as in the US (cpaps are very expensive here because we pay 100% taxes - yeah, I know, that sucks, protecting brazilian industries from unfair foreign competition would make sense if we had a cpap company here).

Cheers,
Fabio.