I had the same problem with my mask. I changed to a different type of mask that did not fit well and then just a nose mask and then back to the mouth and nose mask. Had a devil of a time getting used to it but just kept trying until I found the right combo. Now I have a hard time sleeping without it. It just takes time. As far as the pressure, if it is a mild form of Apnia then the dr shouldn't have a problem turning it down. What machine did they give your wife? Resmed? Mine is adjustable but I have it cranked up because my Apnia is a severe case. I drive semi and I have to use it or they will not give me my medical card.

 

my opinion it is over prescribed and there are better ways but they just keep up the old routine. those with a severe case i am sure are glad they have them though. science has to have come a long ways but this one is quite the money maker.:twocents:

 

Seems the time is right for a second medical opinion.

 

Ask about an auto adjust cpap. My wife's first two were prescription set and every time her mouth opened, it sounded like a tornado. We got used to it but now we don't have to with the auto adjust. Play around with mask options and find the best fit but the bottom line is if your pulmonologist prescribed it, use it. It makes life so much better. jvp: I'll see your two cents worth and give you one and a half back in change. Just a money maker...better ways ? I don't think you know much about apnea. Even mild cases can cause brain damage or death over the long haul. I'm curious what the better ways are ?

 

jvp: I'll see your two cents worth and give you one and a half back in change. Just a money maker...better ways ? I don't think you know much about apnea. Even mild cases can cause brain damage or death over the long haul. I'm curious what the better ways are ?

i speak from experience:flowered:

 

13lbs is pretty significant. Mine is only set at 9. If the doctors can't find a properly fitting mask, it might be worth trying one of the mouth pieces that dentists make. Moves the lower jaw slightly forward and helps open up the airway. That works for a lot of people. I personally cant use one.....Apparently it worked for me when it was in, but I spit it out every night in elk camp so I gave up on it.

 

I have been on a CPAP machine for over 10 years. I started out with the full mask and that lasted less than 30 days, I hated it. I tried several masks and then I ordered a ResMed Mirage Swift II nasil pillows. I learned to keep my mouth shut and breathe through my nose while I slept. This worked for me and I have not missed a night in over 10 years. I have used my cpap camping and at a hunting camp, I do not let it alter my life.

 

i to have been on the cpap for years and you are right the resmed nasil pillows work great for me.

 

..... We both have suffered from a severe lack of sleep from this.What should she do?

She kicked me out, actually I volunteered to I sleep in the guest room. Now we both get a full night sleep. J/K .

 

If she has trouble with her mouth opening (thus the noise and blow-by which nullifies the effectiveness of the machine) she might try a mask that covers both nose and mouth so that it doesn't matter whether her mouth opens. I have a relatively moderate case with my machine set at 9 or 10 and use a FX Mirage nose mask. I don't mind it, but will occasionally experience some blow-by which is disruptive for a partner. I couldn't use the nostril types at all.

I think in the old days they just called relatively mild forms of obstructive apnea 'snoring'. I think the units are likely way over prescribed, however the more severe forms of apnea are dangerous and one should not minimize the importance of treatment.

I look at the supposed state-of-the-art crap I have and I feel pretty good about it because there is no way this can be the end of the technology. They have to come up with something better than this. I don't think we are there yet. I saw a machine the other day that was no bigger than a domino chip and it plugged right into the nose.

It does seem like absolutely 100% of folks complaining of tiredness that undergo a sleep test are prescribed a CPAP. Half the people I know in their 50's or 60's have them....fat, slender, fit, slovenly, big, little,.......you name it, they all have them. Never heard of anyone given a sleep test that didn't get put on a machine. Really just a relaxation in the back of the throat due to aging for most people. For me, I do get a better sleep using it and don't mind it that much, but one looks like a friggin' astronaut pilot when you go to bed. Not exactly romantic unless you are playing 'Star Wars' with your mate.

 

I sleep great with ear plugs:twocents:

 

She just needs to have the mask refitted or shown how to adjust it herself. As far as the nasal pillow masks, they just don't work for everyone. I can't tolerate them at all. It is not the pressure that is the problem it is a simple mask fit. CPAP is a real life saver please just have patience and get a proper fitting.

 

They have a chin strap she can use to help keep her mouth shut to help. Not sure if she has tried this?

 

Whatever you do-- dont fall for the "My Snoring Solution" scam on Facebook. They want $119 for a velcro and neoprene strap that you can get for $12 on eBay or Amazon. ( and they tell you it will replace a CPAP-- it will not!)

 

My machine is auto adjust and has what they call a ramp up mode. Starts off with really low pressures, and slowly rises until it enters the auto mode. This helps 2 ways: much quieter until I actually fall asleep, and allows for small adjustments on my mask without having to fight the full pressure.

 

Hello SP - I have responded on most of the CPAP threads and I will try to help you as well. I have over 24 yrs. of experience as a Registered Respiratory Therapist and have been a CPAP tech for a DME (Durable Medical Equipment supplier) for the past 7 yrs. (second job).

The overwhelming majority of people with sleep apnea have the ostructive form (OSA). Some folks have the central form of sleep apnea (CSA) which is neurological in nature and CAN NOT BE treated effectively with plain old CPAP. Yet other patients have a mixture of the two.

13 cmH2O (not pounds) is a significant amount of pressure for someone with "mild" OSA; more info is needed. Body type (weight issues), neurological problems, other medical conditions, sleep habits, alcohol, etc. can all play a part. You might not be comfortable sharing this on an open forum, but her MD will (or certainly should) take these factors into consideration.

The amount of pressure is a legal prescription, just like any medication. The RT that your wife saw is correct in that they can not turn the pressure down without a new Rx from the MD. I will say that most of the time, MDs are receptive to reducting the pressure slightly if it means patients will comply with therapy. Auto titrating machines (as another poster mentioned) can be helpful in this process.

Did your wife have a polysomnogram done at a hospital or sleep center or did she do the test at home? I need more info in regards to this. As a money saving measure, lots of tests are being performed at home now, instead of in a sleep lab.

In my experience, this is rather unsuccesful. "Home" sleep studies CAN show definitively if someone has sleep apnea, but, they do nothing to address the treatment of it. In the sleep lab, a polysom tech (usually an RT) can, if needed, fit the patient with a "mask" (both style and size) and remotely adjust the amount of pressure needed to assume and maintain airway patency (open the airway and keep it open). There is no way to effectively address this at home. To combat THAT problem, lots of MDs order an auto-titrating CPAP machine and let it figure out how much pressure the patient needs to maintain airway patency. This still does not address the problem of mask fitment, which is where the RT comes in. Even if the RT is very experienced, both they and the patient are placed at a disadvantage. Fitting a mask on a patient awake and sitting up in a chair at the DME shop is completely different from in bed and (hopefully) asleep. I could literally go on and on with this subject, but, long story short, ALL patients are better served having a polysomnogram done in an accredited facility.

I await more info from the OP before further comment. PM is fine also.

 

Check you tube there are videos on how to adjust the pressure. Plus there are sleep apnea forums that will tell you how. It's not illegal to do change the settings yourself and the Cpap police won't come knocking on your door.

 

The amount of pressure is found during your sleep study, when they put the CPAP on you and slowly turn it up until you stop having breathing events. If you are going to turn it down, you might as well not use it at all. They WANT you to use it, so they will prescribe the minimum effective pressure.

It definitely took some getting used to, but I like my CPAP. I did not see any immediate health benefits, but I wear it because my wife would rather sleep next to darth vader than she would a man being waterboarded.

Maybe it's good for me, maybe not, but I still get to sleep in the same room with my wife. I use 17 psi, a full fighter pilot face mask, and a chin strap. That's because if I don't use a full mask and a chin strap, my mouth falls open as soon as I fall asleep and then air rushes in my nostrils and out my mouth.

One of the keys for me was rigging up some hose management. I bought a new headboard that I could attach the hose to so it always goes up and behind me. This takes alot of the pressure and twisting loads off the mask that cause leaks when you move at night.

I highly recommend Dr. Scott Fromherz at Westside Sleep Center. First class facility, first class doc, and great folks to get you fitted to the most comfortable solution for your problem. My mask tore and they shipped me one next day.


Kurt J. Bergner

 

You didn't mention whether they actually did a sleep study are not or whether the physician she is seeing actually specializes in sleep. If she hasn't had a sleep study done, that really needs to happen. A part of that process will be evaluating the type and level of pressure that works most effectively for as well as trying a variety of masks to see which fit her best.

For me, I prefer using a specialty vendor for my CPAP rather than one of the big DME companies. It feels like I get more focused and responsive attention. I've been using sleep technologies. As has been pointed out, the supply vendor can not change the prescription, but a good one would also be communicating with the prescribing physician if there are issues.

Good luck with this.

 

Masks and getting used to them is the hard part. I have moderate but my machine is an APAP, meaning it adjusts between the high and low pressure as necessary. It is set to 8-12, but runs at 8 probably 90%

It starts me off at 6 for about 10 minutes and I'm usually asleep before it ramps up.

My first mask was pretty quite but the cushion life was poor. I'm currently using a mask that is ok noise wise but it vents in a circle instead of into a defuser so it is noisier and blows on the pillow enough I had to change the way I sleep.

Finding the right mask is a pain they don't fit everyone and some poorly if at all.

 

Thanks for the advise. The machine my wife was given is a auto ramp up.The original test was done at a hospital. According to the Dr. the mask she was given by Lincare was too large but Lincare claimed it was the smallest one they had. Dr. then ordered the nose pillow mask. This as stated ,puts out so much pressure set at 13 that it burns in the nostrils and causes her ears to constantly pop. They are now waiting for the Dr.to figure out what to do.

 

The mask I use now is the ResMed Mirage FX it is a nasal mask it works great except for the defuser, but I'll put up with that since it is pretty comfortable. For me I need to shave or I get leaks.

The real key to this stuff is finding a mask that works best for the patient, keep trying them till you get it right.

My sleep study only showed 18 events an hour, but my blood o2 saturation was below 79%, ya I was pretty brain dead for a couple hours before I started using the device. I'd literally have to get up a couple hours before any event to shake out the cob webs. Not any more.

I have Asthma and COPD and it is almost an automatic that if you have Asthma you have some level of apnea. I find that when I'm having an attack the APAP is actually makes it worse by ramping up the pressure on restricted or clogged airways. I'm going to have them re-test me for a BiPAP

I hadn't dreamed for years. At my six month follow up the Dr asked how the dreaming was going and for several month I was hyper dreaming. I told him it was much better. I'd been in six plane crashes, two building collapses, a couple train wrecks and too many car crashes to count. He was pretty surprised. What he said after that isn't for this web site but it was hysterical.

 

December 27th will mark the 8th year since I was diagnosed with severe sleep apnea. My overnight sleep study in a sleep disorder center showed that I was averaging 2 stoppages of breathing per minute with my blood/oxygen saturation level down around 80%(less than 90% = bad). IMHO the CPAP literally saved my life. I have only missed 3 nights of use in the last 8 years, and those were when my electricity inverter blew a fuse on a camping trip. Yes, I know that an inverter is not the best method for powering the CPAP but it works best for me and I now carry extra fuses when camping.
I started out with a nasal mask but found that a full mask that covers my mouth and nose works best for me as I tend to be a mouth breather when asleep.

I LOVE MY CPAP!

 

Never heard of anyone given a sleep test that didn't get put on a machine.

My wife. I was convinced she had apnea due to her window-rattling snoring. She was tested and the doctor says nope, she's good.
I was dumbfounded.

 

I am new to the CPAP,, maybe 6 weeks now. I find for the most part, it makes a difference when I can use it and keep it on. Its the nose only mask and I tried the full mask but nose only is the ticket for me. My biggest challenge is I tend to get stuffed up from time to time and then I find I take it off in the middle of the night due to not being able to breathe decently through my nose. I wake with the driest freaking mouth you could possibly imagine. It seems to work better if I don't add water to the unit. Anyone else have the stuffy nose situation and if so, how do you deal with it and keep your mask on?

 

i have the same problem with the dry mouth. i always keep water next to my bed and when i wake up with the dry mouth i take a drink. some nites i will drink a quart of water. but it helps.

 

The reason for the extremely dry mouth, particularly with nasal masks and pillows, is that a substantial amount of air is leaking out your mouth. CPAP (and BiPAP, APAP, AVAPS and any other PAP therapy) is ONLY effective if the pressure going in "works" on the obstruction. There needs to be a sealed (or very nearly sealed) system. If the air goes in through your nose and the majority leaks out through your mouth you might as well not be wearing CPAP at all. Period, end of discussion.

In regards to drying of the mouth, pretty much a person's entire oral health depends on the oral cavity staying moist. Our mouth is a damp place. Over time, you can develop all sorts of problems if you are dessicating (drying out) your mouth on a frequent basis. Gum problems, tooth problems, tongue problems, buccal mucosa problems, bad breath, etc.

If you are leaking out the mouth, you NEED to get a chinstrap to keep your mouth closed AND your cheeks compressed. The absolute best chinstrap on the market, and I have personally tried them all, is the Ruby from Puresom. I, personally, leak so badly from the mouth that I require a full face mask AND a chinstrap, which is the worst case scenario.

If you're feeling nasal congestion, the most likely reason is that the humidity is not right. Humidity/temperature levels do not fall under the MD Rx and can be adjusted by the CPAP tech. If the humidity is too low, the nasal mucosa can shrink and dry out which can cause bleeding from the nose; if the humidity is too high, the mucosa can swell up causing congestion. CPAP can also affect the sinuses. The perverse thing is that exactly the opposite to the "norms" can occur. For most of my patients, I recommend increasing the temperature/humidity more often than reducing it. As with everything CPAP, you, as the individual, has to discover what works best for you. Adjust the temp/humidity (either up or down) in small increments until you find your sweet spot.

Some people can skip the humidification all together, and it works for them. They are in the minority. The airflow that a PAP machine puts out will generally completely overwhelm the body's natural ability to warm and humidify the air being breathed in. I always recommend my patients utilize humidification with PAP therapy. Only about 1 in 10 folks can comfortably use PAP therapy without supplemental humidification.

Use DISTILLED water in the CPAP machine, NOT bottled drinking water, tap water, filtered water, or, certainly not, well water. There are a few different reasons, but one of the big ones is that good "tasting" water has minerals in it. Literally pure water is supposed to be colorless, odorless, and tasteless. Mineral precipitates are not good to ingest into your lungs and are not good for your CPAP equipment, so use distilled water in your PAP machine and clean the water tank REGULARLY - at least once a week (which is also how often you should be cleaning your mask) at a minimum. It is not difficult! Use a solution of white vinegar and water, allow to soak for 10-15 minutes, drain the tank, then rinse thoroughly with distilled water and let it air dry. If your water reservoir is easy to open up, you can even put it in the top rack of the dishwasher ON THE RINSE CYCLE ONLY! Automatic dish soap is very powerful and can ruin the gaskets/seals rapidly.

 

Thanks again for the advise. My wife's biggest problem seems to be the supplier of her equipment as they are difficult to deal with. They were supposed to get a hold of the Dr. several days ago but so far no answer from them. So here she is going without the machine over the weekend.They claim to have a very limited selection of masks and their therapist is only part time at the branch.The replacement filters for her machine never arrived ,but they claimed they ordered them three times. I think it is time her Dr. switched the prescription to a different supplier.

 

I also work part time for a small "Mom & Pop" DME not a nationwide chain like Apria or Lincare. I have many, many patients come to me when they are unsatisfied with their current CPAP provider. We also don't have the mask selection in stock that the "big boys" do, but, we can order in absolutely anything on the market. What I always DO have on hand is something far more valuable. Nearly a quarter century of experience and an owner that allows me the time and tools needed to provide excellent customer service.

You are not required to go to the DME selected by your MD. You can go anywhere that sells the equipment you need. Always check first to see if they take your insurance. You can have your MD's office fax your Rx where ever you want it to go, including internet companies. There are lots of them and they are usually cheap and fast, provided you know EXACTLY what you want and need. Also, I always advise my patients to be the party that contacts the MD, not the DME, if you need a change in your Rx.

Filters last a long time and can be cleaned and reused over and over. Your wife really should not need to be getting replacement filters for a good long while. The filters in my machine last a year (or longer) with minimal care.

 

14 years 11r`x resmed Cant sleep wo it