PROGRESS!

I used cpap for the first time 2 days ago, really excited and positive. I've had apnea probably for 20 years(out of 37) before my diagnosis, because I never could sleep through the night, and am always tired. My dad has it and convinced me to get checked. The first night I slept for 2 three hour periods (waking up twice) with incredible sleep! I dreamed several dreams it seemed and upon awakening each time, I didnt feel the usual groggy, drunken as usual. BUT I had aerphagia as I have now learned the term, with all the symptoms. E-mailed my Resp Tech and he told me to come here and check these resources, gave me a few tips but said he could make no adjustments without a new prescription. I talked to my dad and searched hours of posts here, and me being so darn SMART..just figured out I would lower my pressure a couple cm's. Well, I slept 5.5 hours, dreamed and dreamed, had very little aerophagia discomfort, and got up refreshed!! I plan to stay at this setting and try to make it to 7 or 8 hrs, then slowly increase my pressure the 2 points up back to my prescription.

Machine is a ResMed s8, heated humid, full face flexfit 431

Thanks to this forum, and some live chat last night..it looks like I can make it!

Welcome to the forum!
You should fill in your profile, it makes it easier, in future posts, for everyone to see your equipment and give you better advice.
You didn't say what your titrated pressure was, this is an important bit of info.
Is your machine straight cpap or an auto? If it's an auto, what pressures is it set at? Do you use EPR? I know I'm asking alot of questions, but it will help you get better answers.
I like that you are willing to take charge of your therapy! Keep up the good work and keep posting, you never know when somwthing you think of may help someone else!

Brenda

I would guess from what you say that your machine is not an auto.

I would hesitate to lower my pressure without data. You are titrated to that level to stop the events.

I would however, consider changing to an auto machine with cflex. Only reason I say cflex is Resmed's version of exhale relief cannot be used in auto mode.

With the auto you can still allow the machine to go to your titrated pressure for the time it needs to. In my own experience that is not a large percentage of the night and it will automatically run lower (reducing your comfort issues) for the rest of the night. This will do basically what you are doing by lowering your cpap pressure but still treat your events that require the higher (2cm) pressure.

my machine is straight cpap, and I dont have EPR, not sure what that is though. My titration was prescribed at 11. Now, during my second sleep study, when fitted, I had a full beard. I also never got a good seal with the full face mask supplied. The therapist put some gause under my chin to help alleviate the leakage. She asked me twice, was at at a good pressure...I answered that I didnt know..she increased it twice until it got to 11. Now I have shaved my beard and have a perfect seal, so Im thinking that the titration was too high..compensating for the air leakage with my old beard. I can say that, my sleep now is 200% better than ever. I used to be able to tell within 5 minutes what time it was when I woke up, no joke. I also woke up fully awake 5 times every night (of course my study showed many more times waking due to apnea..longest apnea 25 seconds!). Every time since the cpap..even after my change of the pressure to 9, I fall to sleep, dream constantly, and when I wake, I have no idea what time it is at all, and I feel rested, alert, happy even! So, my thinking is, that lowering the pressure by 2, did help with the bloating..definitely, and definitely improved my quality of sleep and awakening. I will gradually increase the pressure, but slowly. I dont mind help with the numbers, but I need to really look at symptoms declining and the results also. What do you think?

I think you are on the right track..Don't be too concerned about the titrated pressure, until you can cope with xPAP..If you feel better, you are better..Keep up the good work!

First of all congrats on reading up on apnea and taking charge of your life.

I agree with snoregirl.

Decreasing your pressure, may cause an increase of apneas or hypopneas. Without the data you can't tell.

Can you get a auto CPAP that is used for titrating, from the DME and check your titration again?



[quote="snoregirl"]I would guess from what you say that your machine is not an auto.

I would hesitate to lower my pressure without data. You are titrated to that level to stop the events.

I would however, consider changing to an auto machine with cflex. Only reason I say cflex is Resmed's version of exhale relief cannot be used in auto mode.

With the auto you can still allow the machine to go to your titrated pressure for the time it needs to. In my own experience that is not a large percentage of the night and it will automatically run lower (reducing your comfort issues) for the rest of the night. This will do basically what you are doing by lowering your cpap pressure but still treat your events that require the higher (2cm) pressure.

Im pretty sure Im stuck with this machine, unless I get another titration order from my doc, then another titration, then fill the script again, then see if I have an issue. Time and money is a factor though for me. Insurance covers most, but deductubles cost, and time off work to do the whole thing again will really cost. My resp therapist said he couldnt lower the pressure unless I got another prescription, that means another titration because a general practictioner cant make that determination without a recommendation from the sleep doctor, I guess because of potential liability. So I have to figure, all that just to lower my pressure 2 cm's for couple days? I went to the Doc because of symptoms, and because my dad's a cpap user and motivated me. Im glad I did, thats for sure. But I can tell you, from my previous posts up top, my sleep is like when I was a kid..lost in time and space, dreaming and waking up with all this energy..the adjustment has had to help. My goal is to get up to hopefully 8 full hrs of sleep, or as needed more, but this aerophagia issue cant be tolerated for too long. I do a lot of climbing at work, lifting and I work very high..40ft to 200ft. This isnt the type of situation to be cramping up in pain with gas hehe. I hope Im not doing any damage, but even reduced in pressure, its definitely helping.

Utter, why do you think you are stuck with this machine.

How long have you had it?

Read some of the other post about fighting for an auto. Remstar or M from Respironic. You can monitor your data.

The code for an auto or straight CPAP is the same.

If the DME is a no go, even if you need to pay a bit extra it may be worth it for you to do it, if you can afford it.

Think of the benefit to your gas problem, less time and money spent on on titrations.


I fully understand that drunken feeling pre CPAP. That went away after one night.

Good Luck and keep us posted.

uther, I'm not a doctor or anything in the health care field. I agree that it's usually better to not lower the prescribed pressure.

However, I personally feel that a lot of this kind of treatment has to be a trade-off. Having experienced painful areophagia a few times, I definitely would do what you've done...drop the pressure down a few cm's to alleviate the aerophagia.

As you said, you can start raising the pressure gradually over time, to see if you can eventually get it back up there without having aerophagia return.

When it comes to pain threshold, aerophagia threshold, effective treatment threshold, etc., it can be a real balancing act to get all the pieces of the puzzle together in a way that lets us actually "sleep". Better, in my non-medical opinion to get slightly suboptimal all-night therapy that you can sleep with than to have to cut the hours of use down to just a few. Or worse, have to give up treatment entirely. Some degrees of aerophagia can be painful enough to lead to that.

Of course, an autopap could give you the best of both worlds if it so happens that you actually don't need your full prescribed pressure of 11 most of the night. Might be that there are just brief periods during the night when the full 11 is really needed. Or even more pressure briefly sometimes.

If a person is willing to buy their own machine out of their own pocket, it takes only an Rx with one word on it..."cpap"...to buy an autopap from the online store, cpap.com. That one word Rx can be written by any family doctor. Doesn't even need to have a pressure stated on it, as the autopap will come pre-set from the factory to use a range of 4 - 20. It will come from cpap.com with the settings setup instructions, so can be changed to whatever range a person wants to use (like 9 - 14) or even set to operate as a single pressure straight cpap.

We spend one-third of our lives sleeping. I'm a big believer in the life giving, life enhancing, life extending benefits of cpap. I'm also a big believer in comfort. Autopap gives me both. But if I were in your situation, uther, using a straight cpap at a pressure that gave painful aerophagia, I'd drop it down just like you did, hoping to be able to work the pressure back up.

One-third of our life -- spent sleeping.

I'd buy myself a REMstar Auto with C-Flex.

I see your point..didnt know all this..I will research it and you are right..a few extra bucks is a small price to pay for 1/3 of your life!

Its been a week now since I dropped the pressure from 11 to 9, and I worked it up until 10 with no aerophalgia! But at 11..it returns with a vengeance. My sleep has been great, but I have developed another problem. My full face mask as loose as I can get it without compromising my seal, has left a painful mark on the bridge of my nose! so painful that I had to skip last nights use of the mask. I tried a couple days before, using a bandaid on my nose bridge, tried a few different size masks, but I have thin skin on the nose bridge and now it is red and almost blistered. I told my dad, and he is sending me a resmed swift mask, nasal pillow mask to try. I should get it tuesday. I dont breathe through my mouth at night, and I hope I dont have anymore problems. I just want to sleeeeeppp..zzzzzz

For the sore on your nose...
Some people put mole skin on the mask where it is digging into the skin.
Some use bandaid blister strips on the skin where it is sore.
During the day you can put a little Aquaphor on the sore spot and it will help it heal quicker.
It does seem that eventually these sore spots toughen up.

Do let us know how you make out with the new mask!

Brenda

Uther,
I met you in the chat room one evening a few nights ago, and it's good to now hear you are sleeping and feeling so much better. After having that, isn't it hard to face a night of misery? Hope using a a nasal pillows interface will work for you, at least till the sore heals. I had a pressure sore on the side of the bridge of my nose when I tried a nasal mask, and it's no fun. Was your full face mask your choice to accomodate occasional times of congestion, or was it assigned to you for a reason? Since you say you're not a mouth breather, I was just wondering.

Couple thoughts about whether your DME will exchange your equipment. If the therapy for any reason isn't working for you with the equipment they provided at the pressure they determined was therapeutic, they have not completed the job they were paid to do. Would you pay a mechanic who almost got your car fixed? Would you pay them more when you had to take it back to get done what had already been paid for? Doubt it. Just like after surgery one is instructed to follow up if they are not healing as they should - it's all part of the package deal and not extra favors. A good provider does not want you to have anything less than effective treatment. Afterall, their reputation is on the line, and they would rather have you come back than maybe bad mouth them without giving them a chance to see this through to a satisfactory end.

First of all, you should not have to go in for another study to see what pressure is effective at this time. Unless they can give you medical cause not to, they can loan you an autopap for a couple weeks to fine tune the titration they have already done in the lab. At that time you'd have real life data to go on. Or, just tell them you want to switch, and get one where you have the ability to follow your own data so you'll know if you need to contact them for specialized help. If you decide an auto is better for you, here is your case.

1. Titrated pressure causes aerophagia and you want to be able to use titrated pressure when needed only, not all the time, so that you can be compliant on the prescribed therapy.

2. An autopap can be set to run in cpap mode, and one with with data capabilities will give you the option of monitoring your data to see if it is still therapeutic.

Keep in mind the point someone made about cflex (EPR) not being available in auto mode on all brands of machines.

With a goal of using this machine for several years, why not get everything you can to give you the greatest comfort and effectivness possible? Now, there will probably be a limit to how much mask changing you can do without paying. It's great that your dad has given you a trial run on one of the nasal pillows interfaces. If the FF mask was not your choice and they didn't even try you on any other options, they may allow you to switch based on this one causing a sore. Never hurts to ask.

If you are satisfied with the least expensive options, they will be very glad about it as it increases their profit margin. But you can't allow that to cause you to compromise what's best for you. Don't offer till you know there is no other choice, but you may have to pay the difference between the lower end and upper end machines.

Almost paradise. Wonderful, but don't settle for almost if the full experience is as avilable to you as almost. You had a taste of good sleep, now you know it's worth it to get this to work at it's optimum. Even then, I doubt it will always be bliss, but at least so much better.

Guest was me, my login timed out.
Kathy

Thank you all for your advise. The full face mask was just the mask given to me a tritation to try, and since it had results, they didnt offer me a different type. I dont have any nasal congestion. I will also look into an autopap machine. I will see what my DME providers says. Thats why I enjoy this forum. So much experience and wise advise, as I am a big believer in not re-creating the wheel, just improving on it!