I was diagnosed with sleep apnea about 6 months ago now, apparently severe apnea, with up to 60 episodes per hour and oxygen levels in the 70% and apparently dipping into the 60's.  I and the doctors where very amazed at my level of apnea, because I'm only 24 and I'm thin, but I knew there was something wrong because I'm extremely tired all the time.  
So I've been trying CPAP for awhile and I have not noticed any improvement at all, it actually make me feel worse because it pumps my stomach full of air and I wake up with stomach aches and then I feel kind of sick for the rest of the day.  My repertory therapist has tried different machines and lower pressure and I still fill up like a balloon.
My sleep specialist sent me to a Dentist that specializes in making oral appliances and everything that the dentist said sound very good, he has sleep apnea himself and said that CPAP did not work for him but his appliance does, he also says he has an over 80% success rate.  So I was all excited when I left his office, thinking that I have found something to solve my apnea, then I get home and read up about the appliances and read that they apparently only work for people with minor sleep apnea, and according to my tests I don't have minor sleep apnea.
I had a sleep study done a couple month ago, and it showed I need a pressure of 12 with CPAP, and at 12 it apparently helped my apnea, but it filled me up with air so fast that it is impossible for me to use the machine at that level, even at a level of 5 I get filled with air.
So could the appliance help me with my apnea, or will it be a waste of $2300 (that CDN dollars)?

Thanks for any help or suggestions you can give me.

Jonathan

Jono wrote:

I was diagnosed with sleep apnea about 6 months ago now, apparently severe apnea, with up to 60 episodes per hour and oxygen levels in the 70% and apparently dipping into the 60's.  I and the doctors where very amazed at my level of apnea, because I'm only 24 and I'm thin, but I knew there was something wrong because I'm extremely tired all the time.  
So I've been trying CPAP for awhile and I have not noticed any improvement at all, it actually make me feel worse because it pumps my stomach full of air and I wake up with stomach aches and then I feel kind of sick for the rest of the day.  My repertory therapist has tried different machines and lower pressure and I still fill up like a balloon.
My sleep specialist sent me to a Dentist that specializes in making oral appliances and everything that the dentist said sound very good, he has sleep apnea himself and said that CPAP did not work for him but his appliance does, he also says he has an over 80% success rate.  So I was all excited when I left his office, thinking that I have found something to solve my apnea, then I get home and read up about the appliances and read that they apparently only work for people with minor sleep apnea, and according to my tests I don't have minor sleep apnea.
I had a sleep study done a couple month ago, and it showed I need a pressure of 12 with CPAP, and at 12 it apparently helped my apnea, but it filled me up with air so fast that it is impossible for me to use the machine at that level, even at a level of 5 I get filled with air.
So could the appliance help me with my apnea, or will it be a waste of $2300 (that CDN dollars)?

Thanks for any help or suggestions you can give me.

Jonathan

Jonathan,

At best you might see a 50% reduction in AHI.  That would leave you at 30.  At 30 you are still considered severe and would still require CPAP.  

But, there are some things that might be able to help you.  

Talk to your RT about an auto titrating CPAP.  This allows the pressure to remain lower until an event, and then raises the pressure to treat it.  The machine I use has this and also exhalation relief, so the pressure drops a bit to make exhaling easier.  The combination might be able to reduce the aerophagia (trapped air) and allow you treatment.  I have heard some folks say that their docs have lowered their pressure for a while then increased it after a few weeks.  I had problems with aerophagia myself, and I know its not fun, but I can tell you that after a few weeks I didn't have the problem.  

There have been a number of folks that have combined the pillar procedure with a dental device and gotten their AHI down low enough to not need cpap.  That is another option, but with an AHI that high, I don't know if it would work for you.

One this is for sure, with an AHI that high and your O2 dropping that low, you need to get effective treatment.

Jono wrote:

I was diagnosed with sleep apnea about 6 months ago now, apparently severe apnea, with up to 60 episodes per hour and oxygen levels in the 70% and apparently dipping into the 60's.  I and the doctors where very amazed at my level of apnea, because I'm only 24 and I'm thin, but I knew there was something wrong because I'm extremely tired all the time.  
So I've been trying CPAP for awhile and I have not noticed any improvement at all, it actually make me feel worse because it pumps my stomach full of air and I wake up with stomach aches and then I feel kind of sick for the rest of the day.  My repertory therapist has tried different machines and lower pressure and I still fill up like a balloon.
My sleep specialist sent me to a Dentist that specializes in making oral appliances and everything that the dentist said sound very good, he has sleep apnea himself and said that CPAP did not work for him but his appliance does, he also says he has an over 80% success rate.  So I was all excited when I left his office, thinking that I have found something to solve my apnea, then I get home and read up about the appliances and read that they apparently only work for people with minor sleep apnea, and according to my tests I don't have minor sleep apnea.
I had a sleep study done a couple month ago, and it showed I need a pressure of 12 with CPAP, and at 12 it apparently helped my apnea, but it filled me up with air so fast that it is impossible for me to use the machine at that level, even at a level of 5 I get filled with air.
So could the appliance help me with my apnea, or will it be a waste of $2300 (that CDN dollars)?

Thanks for any help or suggestions you can give me.

Jonathan

Hi Jonathan,

Bloating is usually associated with mouth breathing while using a nasal mask or leaving your mouth open. If you are a natural mouth breather.....did they try you out with a full face mask ? You also mention different machines......can you post back some detail (whether cpap/APAP/BiPAP).

The mask is everything. Machines merely blow air. On the plus side there are numerous types ranging from nasal, full face and nasal pillows. There are also combination oral devices.

You sound very frustrated...which I can understand. A pressure of 12 is not terribly high and it should be manageable. Again, post some more detail and I'm sure you will get good suggestions. Main thing, you are not alone in this and the problems you mention are not uncommon.

It is unlikely that the dental device will help with an AHI of 60. I am surprised that your doctor gave you an indication that it might work. Is your doctor a sleep doctor or GP ?

Best wishes..........and post back.

Daniel


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Daniel wrote:

Hi Jonathan,

Bloating is usually associated with mouth breathing while using a nasal mask or leaving your mouth open. If you are a natural mouth breather.....did they try you out with a full face mask ? You also mention different machines......can you post back some detail (whether cpap/APAP/BiPAP).

The mask is everything. Machines merely blow air. On the plus side there are numerous types ranging from nasal, full face and nasal pillows. There are also combination oral devices.

You sound very frustrated...which I can understand. A pressure of 12 is not terribly high and it should be manageable. Again, post some more detail and I'm sure you will get good suggestions. Main thing, you are not alone in this and the problems you mention are not uncommon.

It is unlikely that the dental device will help with an AHI of 60. I am surprised that your doctor gave you an indication that it might work. Is your doctor a sleep doctor or GP ?

Best wishes..........and post back.

Daniel

I am a nose breather but I have nasal problems and when I sleep I start breathing through my mouth because my nose plugs (I've had surgery to try and correct this, but it was unsucceceful).  I used a CPAP machine first with just the nose mask and then I moved to the full face mask and I used CPAP with the full face mask for about 2 months and did not notice anything beside air in my stomach.  Then I had a sleep study and was told I needed a pressure of 12, and when I kept on filling up with air using the full face mask (not at a 12 yet, they where slowly uping the pressure) they told me to stop using CPAP and they sent me out a BiPAP machine.  With the BiPAP I seem to be able to use the nose mask some nights, last night I used it for about 6 hours and woke up feeling fine, but the first night I used BiPAP I only used it for 2 hours and woke up full of air.  I don't know what settings the BiPAP are on, I was told they are on the lowest.  I was also told that the reason I was filling up with air was becasue I was using a full face mask and if I was able to use the nose mask it would solve my problems, but I still fill up with air using the nose mask.  My doctor is a sleep doctor.
Thanks for your help

Jonathan

Mike wrote:

There have been a number of folks that have combined the pillar procedure with a dental device and gotten their AHI down low enough to not need cpap.  That is another option, but with an AHI that high, I don't know if it would work for you.

One this is for sure, with an AHI that high and your O2 dropping that low, you need to get effective treatment.

What is the pillar procedure?

Thanks

Jonathan

Daniel wrote:

The mask is everything. Machines merely blow air. On the plus side there are numerous types ranging from nasal, full face and nasal pillows. There are also combination oral devices.

Can you elaborate on the "combination oral devices" you mention?

Thanks in advance for the help, Zephyrus

Zephyrus wrote:

Daniel wrote:

The mask is everything. Machines merely blow air. On the plus side there are numerous types ranging from nasal, full face and nasal pillows. There are also combination oral devices.

Can you elaborate on the "combination oral devices" you mention?

Thanks in advance for the help, Zephyrus

You might want to look at this link

LINKS to surgery, turbinates, Pillar, TAP experiences

Some folks have combined Pillar Implants with a Dental Device (TAP)  The combined reduction for them was enough to eliminate the need for CPAP.  The caveat here is that the only way to verify the success is to get another sleep study to ensure that you are treating yourself properly.  Unfortunately just feeling better isn't a reliable enough indicator.

Thanks for all the help, I'm going to look into the Pillar procedure, my doctors had not told me about it, they had told me about the surgery, but they always said "you don't want to go that route".  I had another bad night with CPAP night before last,  whenever I tell my respitroty therapist about my troubles with CPAP he always says I just need to get used to it.  Well I am used to it, I was able to sleep the entire night through with it on after a couple weeks of using it, my problem is not that I find it really uncomfortable, it's that it does absolutely nothing for me, all it does is cause me to wake up in the morning with stomach aches.  They don't seem to understand my problems, they say that they've never had a case where the person just fills up with air, yet I read on the internet that it is a common problems but usually goes away after awhile (in my case it's been a few months and has not gone away).
 I'm getting frustrated with what seems to be lack of knowledge from the so called specialist in my area, fist off I had to diagnose my self,  then nobody ever sat down and completely explained to me what the cause of sleep apnea is until I went and saw a dentist that made appliances, one guy tells me the appliance will damage my teeth and jaw, the dentist say it perfectly safe, my sleep specialist tells me there's only three treatment; CPAP, appliance, and pallet surgery, then I read on the internet about other treatment that don't involve cutting me up.  I had surgery on my nose (deviated septum and turbinate reduction) and I now have a harder time breathing through my nose than before the surgery (it's been 7 months).  It seems every specialist in my area think CPAP is the only way to treat apnea, and they aren’t willing to try something else when CPAP fails.
Sorry for my rant, after reading about the pillar procedure I got really frustrated that none of my specialists had even mentioned it.

Thanks for all the help.

Jonathan

Zephyrus wrote:

Daniel wrote:

The mask is everything. Machines merely blow air. On the plus side there are numerous types ranging from nasal, full face and nasal pillows. There are also combination oral devices.

Can you elaborate on the "combination oral devices" you mention?

Thanks in advance for the help, Zephyrus

There are a number of devices ranging from the Oracle oral 'mask' to actual Mandibular Advancement Devices (dental) that also have an interface for cpap which allows air in through the mouth. You would need to see a specialist dentist about these.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Jono wrote:

Mike wrote:

There have been a number of folks that have combined the pillar procedure with a dental device and gotten their AHI down low enough to not need cpap.  That is another option, but with an AHI that high, I don't know if it would work for you.

One this is for sure, with an AHI that high and your O2 dropping that low, you need to get effective treatment.

What is the pillar procedure?

Thanks

Jonathan

Pillar Procedure involves inserting 3 plastic type devices (like shirt stiffeners) into the soft palate area of your mouth. It's carried out under local anaesthetic in the surgeons office.

Restore Medical market the procedure. They think its great for everything, but their own (very) limited studies show that after 90 days it has proven effective for treating snoring and in some very mild cases of sleep apnoea. Nothing after that time period.

I think the Pillar Procedure has a long way to go on clinical trials. Restore Medical have a site with a certain amount of data. They will send you a full information pack if you contact them.

I wouldn't rush into it.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

Jono wrote:

I was diagnosed with sleep apnea about 6 months ago now, apparently severe apnea, with up to 60 episodes per hour and oxygen levels in the 70% and apparently dipping into the 60's.  I and the doctors where very amazed at my level of apnea, because I'm only 24 and I'm thin, but I knew there was something wrong because I'm extremely tired all the time.  
So I've been trying CPAP for awhile and I have not noticed any improvement at all, it actually make me feel worse because it pumps my stomach full of air and I wake up with stomach aches and then I feel kind of sick for the rest of the day.  My repertory therapist has tried different machines and lower pressure and I still fill up like a balloon.
My sleep specialist sent me to a Dentist that specializes in making oral appliances and everything that the dentist said sound very good, he has sleep apnea himself and said that CPAP did not work for him but his appliance does, he also says he has an over 80% success rate.  So I was all excited when I left his office, thinking that I have found something to solve my apnea, then I get home and read up about the appliances and read that they apparently only work for people with minor sleep apnea, and according to my tests I don't have minor sleep apnea.
I had a sleep study done a couple month ago, and it showed I need a pressure of 12 with CPAP, and at 12 it apparently helped my apnea, but it filled me up with air so fast that it is impossible for me to use the machine at that level, even at a level of 5 I get filled with air.
So could the appliance help me with my apnea, or will it be a waste of $2300 (that CDN dollars)?

Thanks for any help or suggestions you can give me.

I have used the T.R.D. for 15 years very successfully. But I had the uvulla (?) removed to increase the opening in my throat. Just get a custom fitted appliance. I just tried an "AVEO" which is garbage. A generic appliance that is terrible to use and I am out $550.

Jonathan

Quote:

_________________
I have used a custom tongue restrainer device for 16 years with great success. I had my device made in Seattle.
However I now live in Phoenix and having trouble finding a dentist who does this type of custom device.
Thanks for any info you can give.

I was put on CPAP almost a year ago.  I absolutely loathed and despised the mask and machine.  I had a change of mask but still hated it.  I then changed to the pillow type headpiece which was better, but I still hate the thing.  Then, when my pressure was raised to an 8 I started getting bloating and excruciating abdominal cramps in the morning from the bloating.  My pressure was dropped to a 7 but I still got the bloating.  I had a neck injury years ago so sleeping on my stomach to prevent the bloating is not an option.  I can't keep my head to the side for long without my neck starting to hurt.

I had the UPPP along with a back of tongue reduction.  My surgeon wasn't kidding when she said it was one of the most painful procedures you can go through.  Ten days of pain that was only tolerable when on pain meds.  Couldn't even eat jello or yogurt without hurting.  However, once I hit 10 days, the pain level dropped dramatically.  I was ready to go back to work at 14 days post-op.  The procedure seemed to help at first except that I kept feeling like something was stuck at the back of my throat which sometimes caused a choking feeling.  My ENT surgeon suggested the pillow implants if the feeling continued, but wanted to give me more time to heal first.  She wanted to wait until after my next study to see if it still needed to be done.  The feeling eventually passed and does not occur at all now.

I had another sleep study (my 3rd) done at 3 1/2 months post-op.  Unfortunately, my OSA was getting worse by then.  My sleep doctor has done much clinical research in the field and says she would not have approved the UPPP had I been seeing her at the time.  She says her clinical research has found that apnea is due to the lower area of the throat collapsing and the surgery does nothing to correct that.  The surgery did help my snoring, much to the relief of my husband.  I was off the CPAP after surgery to allow myself to heal.

My most recent sleep study has found I have up to 49 apneas with an increase of up to 66 when on my back.  My oxygen level dropped to 91%.  My sleep doctor has suggested trying the dental mandibular appliance but doesn't think it will really help.  I didn't want to go back on the CPAP unless absolutely necessary, due to the above reasons.  I have a consultation with my dentist this week to ask for a referral to a dentist specializing in sleep appliances.  However, in the meantime, I have resorted back to the CPAP from sheer necessity of needing a decent night's sleep.  I still get the bloating and find myself moving to my stomach to help.  If I keep my head off the side of my bed, then my neck doesn't get turned.  It works for a bit, so far, but can be awkward.  I still hate being on the machine, but am desperate for sleep.  After trying the dental device for a while I will have another study with the CPAP to see what my level needs to be.  My current machine is still at a 7 but has a ramp I can activate when I first turn it on.  My doctor said my 2nd study (on CPAP) indicated I needed to be at a 12, but I just can't tolerate that high a pressure due to the bloating.  Between the surgery and dental device, I hope that my pressure can be lowered.  I guess I will see in a few months.

You should not ask for help in here! Apply to professionally qualified. You may harm yourself!

Hey Just Me! How did it go with the dental device? Let me know if I can help. Jonathan...don't give up on a dental appliance!


_________________
Kent Smith DDS