Desperate and having no luck!

I was diagnosed with severe obstructive apnea last summer with about 41 episodes per hour. Mostly shallow breathing with a few actual stoppages. I was prescribed a cpap machine (I can’t remember what it’s set on…It’s around 10, give or take one- either 9 or 11…seems like it’s an odd number).

I tried using the cpap machine last year for around 3 months and due to severe seasonal allergies was totally unable to use it longer than an hour or two per night. Some nights I couldn’t even try because of nasal passage swelling, dryness and nosebleeds. (there is a humidifier on the machine and I use it, fyi) I actually can get swelling, dryness and nosebleeds just breathing thru my nose normally, without forcing large amounts of air up there to begin with.

I’ve been on shots for years and I’m on TEN different medications for allergies from over the counter to steroid sprays (and my allergies are considered “moderate”!). I’ve talked to my regular doctor, my sleep doctor and allergist looking for solutions. The allergist suggested an ENT that I saw around the beginning of the year. He scoped my nose and throat and said surgically there was nothing he could do and recommended a dental appliance.
My sleep doctor said my apnea is too severe for an oral appliance to help.

I started having serious heart palpitations earlier this year, I’m having joint and circulation problems as well (and I’m only 43) and decided to try the cpap again and see if I could learn to breathe thru my mouth while sleeping (obviously with a mask that covers nose and mouth).

I’ve had it for 2 months this time and again I’m not having any luck.
Worse even, I’ve become so stressed out over the failure that I have severe anxiety over just going to bed at night, dreading putting the mask on my face, knowing it’s not going to work and I’m killing myself by NOT wearing it.
I’ve tried wearing the mask for an hour or even two before bedtime and I can drift off but nearly as soon as I do, I wake up feeling like I’m suffocating and freak out. I can wear it with no problem when I’m awake, and I keep hitting the ramp up button. It doesn’t bother me up to at least 7. It’s not claustrophobia or discomfort with the mask or anything.

Insurance won’t pay for the machine if I’m not using it, which is why I had to turn it in before. I’ve asked the doctor if I could get it turned down and try to build up a tolerance and get up to where I need to be, assuming that would even help but he says no.
I can’t change the settings myself, that’s done with the rental company and they check my card every few months, as does the doctor.
I’m going back to the doctor next week and one of his associates is doing the Inspire implants and I have an appointment with him that day as well, but that works on the tongue muscle and I’m pretty sure my problem is my soft palate so this won’t help.
I’m at my wits end and scared to death there’s nothing that can be done and I’m going to have a heart attack.

I am overweight and am trying to lose, but it's not easy. 10 years ago I was 20 lbs lighter and 10 years younger and I was told then that I snored HORRENDOUSLY but had no idea it might be apnea, and my doctor says only about 10% of people benefit from treating apnea with weight loss. I've got 50 pounds to go and imagine it would at least help, but not cure anyway so I still need a solution. At this rate I may not live long enough to lose the weight.

Does anyone have any suggestions or ideas?
I don’t know what to do!

Hi - what exact model of which machine are you using (the model # is often on the bottom - but don't tip it til you empty the humidifier!). And what exact mask are you using, plus what pressures is your machine set to? And have you tried to use it without the ramp at all?

There is a mask called Tap Pap I think, and another is the Oracle... these are both used with cpap machine and are "mouth" masks. They actually go in your mouth, which would enable you keep your mouth open, just closing around the device. They are not "oral appliances" as such, but classified as cpap masks. Hopefully those who use these will be along to tell you more. In the meantime, you can go to cpap.com and look these masks up to see what they look like. You could also use the search function here on the forum, type in Tap Pap, to find threads related to them.

library lady wrote:There is a mask called Tap Pap I think, and another is the Oracle... these are both used with cpap machine and are "mouth" masks. They actually go in your mouth, which would enable you keep your mouth open, just closing around the device. They are not "oral appliances" as such, but classified as cpap masks. Hopefully those who use these will be along to tell you more. In the meantime, you can go to cpap.com and look these masks up to see what they look like. You could also use the search function here on the forum, type in Tap Pap, to find threads related to them.

The Tap Pap is a nasal pillow mask that is held in place by the part that goes in your mouth (instead of headgear). It is not designed for mouth-breathing. The Oracle mask is an oral mask that is for mouth breathing.

Welcome fallbaby. It's too bad that your doctor wasn't open to your idea about starting with a lower pressure and titrating up to the pressure you need. I think most of us would consider this a reasonable approach and I've seen it discussed here before. Better a too-low pressure for a couple of weeks than no therapy at all.

At the bottom of my signature box there's a link to some video tutorials for the most commonly used machines. You might want to check out the tutorial for your machine which will let you access the clinical menu for info about your current pressure setting(s) and comfort feature settings. The clinical menu, by the way, is where your DME (rental outfit) makes changes to the pressure settings. If it's a ResMed S9 machine, the name of the machine will be right by the Start/Stop button (Autoset, Elite, Escape, Escape Auto, VPAP, etc...). If it's Respironics machine you need to look on the underside of the machine like Julie said and get the reference number for us.

"LUCK" has nothing (or very little, if anything) to do with this therapy.
Education and determination, in my opinion, have the most to do with it.
The sooner a person takes control of their own therapy is when "success" becomes a reality.


Den

.

I don't know if going to a full face mask will help or not. I started with one because I was a mouth breather. I think that I now breathe almost exclusively through my nose, but I wouldn't change masks. Personally I like the idea that I can breathe through my mouth or my nose and there have been times when I will purposefully breathe through my mouth to get a rhythm going... kind of like an inhale exhale routine.

This may also be a case where a APAP is warranted. You doc tor should know that with an APAP a pressure range can be set so you can sleep at 7cm until an apnea is sensed and then the machine ramps up to 10, 11, or whatever the max pressure setting.

My doctor was a die-hard straight CPAP is the best therapy person. At one time this may have been true but at one time dinosaurs roamed the earth, but he has changed his position. What your doctor should realize is that a data capable APAP can be run over a range in auto or it can be set to a straight pressure as a CPAP, but if you can tolerate 7 and the doctor wants 10, then an APAP goes a long way to getting therapy that both of you can agree upon.

This isn't an absolute solution as it will take persistence and maybe a little creativity in your approach to therapy, but it may be a first step.

John

I developed allergies late in life, but they are bad enough to completely swell my eyes closed at night sometimes, trigger asthmatic breathing, and make me miserable to put it mildly. I've been on the desensitization shots for 5 years now, and they help a great deal but I still need meds/steroids. I have found my ASV machine and full face mask help when it comes to allergies. I keep my machine in a drawer I've sealed up so the air only gets in through a hepa filter. I never noticed much help just using the stand alone room filters, or the rather expensive hepa filter I had installed in the heat/air conditioning system. Filtering all the air I breathe at night though seems to help, and since I have to use the machine anyway, why not rig it to be of benefit in more ways than one.

Agreed that posting your machine & mask type will be helpful. If you haven't tried a full face mask, that seems like a good place to start. Have you spoken to your doctor and DME about these specific difficulties? Also check that your humidity level is all the way up. Patients can actually change their own settings...you just have to know the secret steps to get into the clinician menu. If it was me and it was either not use it or decrease my pressure on my own, I'd do that. In fact, I did do that.

My doctor had it in APAP mode and it was driving me nuts, disturbing my sleep. I was convinced I'd do much better without pressure changes and I ended up being right. My doctor had initially denied my request to change to a straight pressure (she thought narrowing the range would make enough of a difference). However, your doctor and DME would see this when they would pull up your data (insurance doesn't care though), so you'd need to be prepared to stand up for yourself, and of course I'd exhaust options with working with your doctor on the settings first. Luckily I have a forward thinking sleep doctor and although she says its not her preference, in my case, she's glad I changed my settings, since I was able to continue using the machine and actually got my AHI down quite a bit with my setting changes.

I'd think especially with a patient who had previously started & quit CPAP, your doctor would be willing to work with you on settings to let you adapt to it. Thats disappointing. Did they explain why? Also, a feeling of suffocating is more often associated with too low of a pressure, not too high, even if it feels too high. What is the starting pressure set to? You say you keep hitting the "ramp up" button while awake and have no problem with pressures below 7 while awake. Typically that button would decrease the pressure back down to the starting pressure (such as for a person to use if they woke up during the night and wanted to start at a low pressure again), not increase it, so I'm confused.

Have you tried using the machine during the day while watching tv or whatever (to take your mind off of it), not just right before going to bed? This can count towards insurance compliance, so can help you to be able to keep the machine this time.

Also, if you do run up against the insurance saying you aren't using it enough, if your doctor was willing, they could do some paperwork and say that you are working towards it and having specific issues, and ask for an extension. It sounds like you aren't getting the support you need from your DME and doctor. That is disappointing but unfortunately common. Hang in there! Don't put so much pressure on yourself. Best wishes.

Hi fallbaby,

I have had allergies not as hard as you but enough to block my sinus. I used cortisone spray each day on my nostrils for 2 years.

Something I find have made a big difference is 2 things,
1)I put a N95 filter on my machine. This is the same material which was used to filter bacteria for the SARS outbreak. You can buy a filter for very small particles you use in the air line also. The moment I started using it I saw the difference.
2)I started using a saline rinse each day twice a day for the sinus. I think it cleans the sinus from the allergenic, what I can say is if I don't do it after coming from work (there is a lot of dust over there) I for sure will have a blocked sinus that night.

The other thing is the amount of humidity and the air temperature I need is very precise. If the humidity is too low or too high I will have a sinus blockage, if the temperature is too high I have sinus discomfort.

I would say, try this simple things. It toke long time before deciding to try the saline rinse, I told to myself that was too simple but that simple thing has made a big difference for me. I hope this help you.

All the best

Rosie

Thanks for all the info and suggestions, guys!

I've got a Remstar Pro 2 Cflex with humidifier and an Amara full face mask, if that helps.
My setting is a 9 apparently.
It starts off at 4 with a 30 minute ramp.

This is the same type of machine I used last fall. I started off with a nasal mask at that time because I thought I'd be fine with that but after the nasal irritation, realized all that air blowing right up my nose was making it HARDER to breathe and that was defeating the purpose!

I've worn it while watching tv in the evening but it's such a hassle to have to take it on and off each time I get up, not to mention moving the machine around, but if that counts towards what insurance is looking for, I'll do that from now on. I need an average of 4 hours a day to qualify from what my doctor says.

I actually don't think it's allergens that are the problem, for those of you who suggested various treatments for that. As I said, I'm on tons of treatments for that and I use saline daily. I can't use a neti pot/ rinse, because that irritates my nasal passages just like the air does and the swelling makes it harder to breathe. (I also have a deviated septum on one side- the ENT says it doesn't require surgery even though it's about a 90 degree angle) My doctors have told me there's nothing more they can do, I'm doing everything right that they have to offer.

I really just think it's the sheer pressure of the air going up my nose that is causing the irritation. Hence, me trying to become a mouth breather, but that's not so easy to just decide to do. I'm already a teeth grinder and have to wear a night guard. When I fall asleep, I naturally just close my mouth and that's when I have trouble breathing and it wakes me up.

I did look up that Oracle mouth mask someone recommended and will find out if my DME offers it or if I can order that somewhere. That may be just the ticket!

As to changing the settings...the only things I can adjust are the level of humidity. The provider suggested I don't use higher than a 4 and I've had it on 3 lately. As it's getting to be hotter weather, I don't like the air too warm, it might be nice in winter but not right now. If that will make a difference I'll try it but it seems to increase the suffocating feeling if it's warm.
I don't know how to change any other settings. I was told I wouldn't be able to, that the DME has to do that and he gets his settings from the doctor and no amount of explanation from me could convince him otherwise.

I've gone over this on EVERY visit with my doctor. I get the feeling from him that he just seems to think I'm a wuss and don't really want to use the machine and if I'm not willing to help myself, he doesn't want to help me either.
Clearly he could see the irritation the first few times I went in, as he's the one who prescribed the first nasal steroid so I don't understand his attitude.
He's supposed to be VERY good but I've considered looking for a doctor with more patience that I'm comfortable with.

I was so excited when I first got my machine thinking that this was really going to change things for me and my health.
It's turned into a source of extreme stress and disappointment and now- frustration!

Thank you for your suggestions though, I've learned a few things and I'm going to keep trying. If I find something that works I'll let you guys know!

Is this your machine?
https://www.cpap.com/productpage/respir ... cflex.html
If so...is it supposed to be a permanent machine (assuming you meet compliance) or is it just a trial machine?
This machine was discontinued back in 2006 or 2007.
There are machines available now with better options in terms of humidity delivery and air temp and even data that is collected.
In the Respironics brand they have the PR System One 60 series machines with the heated hose which means you can have the temperature of the air be unrelated to the amount of heat needed for the humidity.
Meaning you don't have to sacrifice humidity to use cooler air.. Very nice in the summer when the air is already warm.
That's what I do...turn the temperature way down in the summer but I don't have to give up the humidity that my nose needs to be happy. I can still use maximum humidity delivery without warming the air all that much.


The Pro 2 is a full data machine as far as it went back then but you need to use a special smart card and smart card reader to make use of the software available.

No...that's not the machine I have.

Something happened to my settings last night and I tried to input them back in today and must not have gotten the right info from the drop down box and then I cut and pasted...
This looks like mine:
http://www.thecpapshop.com/pr-system-on ... 7Aod7REAUQ

Mine is brand new though, as far as I know and is a rent to own. Insurance pays a portion, I pay another portion and at the end of the year, I get to keep it. That's how it was explained to me.

I'll have to try and fix the info when I get home...
I was using an ipad last night, maybe that was the issue.

Okay...that machine would be model 550 or 560 depending on if you got the 60 series machine or not.
It isn't a Pro 2 of course. I thought it would be odd that you would be given such an old machine.
Now if your machine says "Pro" somewhere on the top of the machine you might have either the 450 or 460 as they are both Pro Cpaps.

If unsure exactly which model...the model number is on a little sticker on the bottom of the blower unit.

If choosing equipment from the profile equipment menu....the 450 and/or 550 links are broken and won't show up but the 460 and 560 links are working just fine.

Were you aware that you could use the mask and machine while watching TV or reading? The machine doesn't know if you are awake or not and as long as it senses your breathing it will record that you are using it. So that's a way to build up some extra compliance hours if you can't get them while sleeping.

Thanks Pugsy, I was under the impression it recorded your breathing pattern so they could tell if you were actually sleeping. I don't know why.

It will show up whenever I take the mask off though, not sure how much of an issue that would be. I'm up and down a lot in the evening, cleaning, letting the dog out, etc. I doubt I sit still for even an half hour at a time but I'll give it a try. Maybe if I get to keep the machine I can get someone to adjust it for me once it's mine!