my situation so far after 1.5 years

[rotoplooker]

I've been battling with tolerating CPAP now for 1.5 years, I wish i could tolerate it for a whole night but I can't, although I won't stop trying. Total compliance is a dream to me. I spent the first year of CPAP getting about 1.5 hours a night with it on and with tweaks and then owning a hybrid I get about 2.3 hours now.

I've booked to see a private ENT surgeon next week, who in 1.5 years will be the first person to look down my throat and see what's going on. In England we have a public health service who have been great to me and let me have a CPAP at no cost to me, although it works out in taxes I have paid but because everything seems to be so underfunded, at no point, did anyone ever look down my throat,.

My original sleep study came back some stats and they confirmed it as apnea and I was RX'd CPAP etc. I keep fit, play a lot of soccer and I'm sure I have improved matters with my sleep.

If there is a chance that surgery could help me I will take the chance.

I'd like to invite you all to comment on this and I do accept that forums tend to be full of far more bad experiences than good experiences so I do expect some people to be down on surgery. I am not scared of surgery and have conquered a lot of physical problems that are not related to sleep apnea.

All sensible comments welcome,

Roto

[Guest]

Well, if you've been faithfully trying to be compliant for 18 months and still can't make it thru a full 5-6 hours at least on xPAP it certainly sounds like a good look-see down your throat and up your nostrils would be in order.

I wish you good luck!!!!

[Wulfman]

Roto,

Sorry to hear you're still having so many difficulties.
Looking at your profile, I see a REMstar Plus......which means you can't get any statistics/reports from your nights.

That makes you a candidate for being another "poster child" for why the manufacturers should quit making the low-end (non-recording) machines.
I'm glad to hear you haven't given up on TRYING.
Any chance of getting a better machine?.....like the Pro 2 or M Series Pro? You'd at least be able to see what's going on.....or not.

Could you please give us some details as to what your machine settings are?

Best wishes,

Den

[NightHawkeye]

Ditto, what Den said.

I know you guys believe in socialized medicine over on that side of the pond, but before enduring surgery, I'd suggest you might want to ask yourself: "What have my physicians done for me lately?" As I hear it, the probability of a good outcome with surgery is far less than the compliance rate with CPAP (which itself is none too good).

If you're as desparate as you sound, why don't you just take charge of this therapy yourself? Data collecting machines are relatively cheap, at least compared with surgery, and a lot less painful than surgery. Seems like a no-brainer to me.

Regards,
Bill ( . . . also willing to share all the things which went wrong with his own last surgery . . . )

[rotoplooker]

I have an apap on loan that I'm trying out to get some data for the clinic this week.

My pressure is at exactly 9 and my original sleep study ( just over 1.5 years ago) came back as 29 events per hour, C Flex is set at 2,

Roto

[Linda3032]

Roto, have you tried to turn the c-flex complete off? Lots of people feel better with it off -- just as lots feel better with it on. You need to experiment to find your comfort level.

Also, please go into detail on what seems to be troubling you. Suffocation? Still tired? More tired? Can't sleep? Leaks? Mask pain?

Fill us in on all the gory details. Maybe we can help.

[rotoplooker]

I want to know why it is I don't breathe through my nose, and why nothing has been done about my 'unusually large tonsils' that were noted lol

After a sleep study I was Rx'd a nasal mask, and I'm clearly a mouth breather!

So based on all of this I'm seeing the ENT

I understand the value of collecting my own data but I know when I feel good and when I feel bad in the morning, I'm not saying collecting data won't help me to understand more but I have a simple gauge of feeling good and not feeling good. I feel that I need to investigate the ENT first. I don't doubt for a second that my AHI is down while I am using CPAP since I know it makes me feel a whole lot better even with just a few hours a night. What I'm saying is, I've hit a brick wall.

Roto

[rotoplooker]

Hi Linda,

I've tried everything under the sun, turned CFLEX off, tried various pressures, I must have tried every mouth breathing option and mask/interface going - even that alien TOTAL FACE MASK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (the exclamation points ARE justified with this mask)

the only brilliant tweak I ever made is using my humidifer at a higher setting and I got slightly better results

I'm not giving up on CPAP, I'm just considering my options

Roto

[kteague]

Roto,
I'm sure there will be several willing to share their surgery experiences. Some went that route in an attempt to not have to use a machine. Others actually could not make the cpap work for them. One person on here who has posted about going thru a series of procedures after trying very hard to make cpap work goes by the name of Swordz. If interested, maybe you could PM him, or search his posts.

Just due to the risks of any surgery, I agree with others who have suggested you see if there's something obvious in the data that could explain why your cpap treatment is not therapeutic before making that decision. Whatever you decide, many here understand your misery and the need for resolution. Best wishes.
Kathy

[harry_barker]

I've got more detail on another post, but I did CPAP 3 years ago....no luck....then surgery. My surgery was a relatively new procedure, Somnoplasty, that I was told was not nearly as invasive as other procedures. Anyway, Somnoplasty was plenty painful. I had the following (in one setting): Somnoplasty base-of-the-tongue, Somnoplasty trubinates, and tonsilectomy. Well that was 3 years ago and I'm back on the CPAP.....surgery did me no good. I am determined to make the CPAP work this time.

Best,

HB

[Goofproof]

[quote="rotoplooker"]Hi Linda,

I've tried everything under the sun, turned CFLEX off, tried various pressures, I must have tried every mouth breathing option and mask/interface going - even that alien TOTAL FACE MASK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! (the exclamation points ARE justified with this mask)

the only brilliant tweak I ever made is using my humidifer at a higher setting and I got slightly better results

I'm not giving up on CPAP, I'm just considering my options

Roto [quote]

I'm glad to hear you aren't one of the few, the proud, that comprize the 5 or less % that don't do well with expiration relief. It's too bad you don't take well to XPAP.

Sorry to hear anyone having to resort to surgery, in hopes of relief. I hope it's the answer you need. My choice is to make XPAP work, no other choice for me until they develope that small pill you only have to take once a year. Jim

[rotoplooker]

thanks to all,

I'm hoping the APAP I have on loan that does record all the data will show something up useful.

Roto

[Guest]

Maybe you just need a bit of a psychological adjustment? I wake up almost every night and want to rip it off, but I'm able to convince myself to keep it on (8 times out of 10, anyhow). It's all in you mindset, in my opinion...

[SleepGuy]

Roto,


I certainly can relate to where you are. After 3 years on cpap I consistently woke up every night about 2 am, angry as could be, and wanting nothing more than to throw my machine across the room and smash it with a hammer.

I saw this idea on a thread a few days ago and have been thinking about trying it out myself. It's a way to make your own mouthpiece using athletic "boil and bite" mouthpieces. It seems to work extremely well in helping people keep their oral air passage pleasantly closed all night--no chin straps, no ace bandages, no FF masks. And it's an inexpensive do-it-yourself project.

Here's the thread:

viewtopic/t18034/Like-you-havent-heard- ... hingy.html
You might want to give it a try--sounds like a great, non-intrusive way to help with the mouth breathing issues.

I also invite you to read the “essential oils” thread on this board:

viewtopic/t17513/essential-oils.html

About ten months ago I started down a path that changed my personal compliance, literally, overnight, so much so that I have put together a little business so that others can try the same thing. From the thread (and several others on this site and others) it seems to be helping a lot of people who are having trouble sleeping with the equipment.

Stick with it!

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[CollegeGirl]

roto,
I know you only asked for opinions on surgery - but if you don't mind, can we at least try to help you troubleshoot CPAP a little? (I'm sure you've been down that road before, but maybe we'll think of something we missed last time).

What is it about the CPAP that makes you rip it off after 1.5 hours?

Do you feel suffocated? If so, can you narrow that down? Do you feel like you don't have enough air going in, or is it too hard to breathe out? If you feel like you don't have enough air going in, it's possible your pressure is too low. If you feel like it's still hard to breathe out, it could be you could benefit from a BiPAP instead.

Is it the comfort of the mask? If this is the issue, you might do much better with a nasal mask or nasal pillows and taping your mouth (or as somone else suggested, trying a boil and bite mouthguard).

If you've already tried or thought of all these things, forgive me. I'm just trying to help, as surgery is generally looked upon pretty unfavorably around here. Out of the surgeries, though, the MMA/GA (jaw advancement) surgery is known to be the most effective, while the UPPP is generally thought of as the worst. (Again, this is general opinion around here, and I am not a doctor/medical professional).