Need help!

[Jollie]

I am new to this site and I am looking for help in dealing with my severe snoring and sleep apnea problem.
I have a CPAP machine but cannot sleep with it - I have tried many times - I usually start to panic after an hour, but have never been able to sleep with it on.
I have tried a humidifier which helps only slightly. I have tried many sprays and breathrite slips but have failed to make a difference.
I was wondering if anyone has tried anything else that has helped?
I am starting to get desperate as things seem to be getting worse.

Any thoughts

thank you in advance!

[Kiralynx]

Jollie,

Filling out your profile help us help you. It also saves you from having to tell us what machine you have every time, and cuts back on us having to ask you before we can answer your questions. Once registered,

1. Look for the User Control Panel, just below the Search box, which is, in turn, just below the CPAPTALK.Com logo.

2. Click on the tab just below the black User Control which says, "Profile."

3. Look to the left, and click on the bar which says, "Edit Equipment."

4. Fill in your equipment, and select "Text" as the display method.

Without assistance, it's easy to have CPAP therapy fail. There are people here who also panic when they put the mask on, yet have learned how to sleep with it. They'll be glad to help. I, myself, dealt with claustrophobia when I first started.

CPAP is one of the best ways of treating sleep apnea and snoring. But you have to take charge of your own treatment to get the most out of it.

Welcome to the Forum....

[Lee Lee]

Welcome!
I'm sorry you're having a hard time. There's a lot of help here, right on this forum.
Have you been diagnosed with Sleep Apnea? How old is your machine and mask? There are some new machines and masks that are much more comfortable than some of the older models.
How much support did you recieve when you first got your equipment? It's very important that you are armed with information and help when you first start to use CPAP.
I had a bit of a hard time at first, but I now, I welcome the machine and the way I feel now, compared to when I was untreated.
Please do not give up on CPAP treatment.
Read the stories above the posts about success stories. You can succeed, too, and there are smart, helpful people on this forum that can help you.
All the best,
Lee Ann

[rested gal]

I have tried a humidifier which helps only slightly. I have tried many sprays and breathrite slips but have failed to make a difference.

In your equipment profile, you mentioned this:

Additional Comments: basic store bought Humidifier

Is it a humidifier that connects to your CPAP machine? If so, is it a heated humidifier?

Or are you talking about a room humidifier -- not connected to your CPAP machine in any way?

Do you feel like you're suffocating when you breathe in while using CPAP?

Or..

Is it difficult to breathe out while using CPAP?

Or...

Are both difficult -- both breathing in and breathing out?

What pressure were you prescribed?

How long have you had your machine?

The Respironics REMstar Plus machine you were given records only hours of use. It would be better to have a Respironics REMstar Pro M series machine, because....

The M series Pro will record AHI and leak info so you can see (in the LCD) how your treatment is going. It's especially important to know if you are having massive air leaks, which would mean treatment air is escaping out into the bedroom instead of going where its needed to keep the airway open.

[Rustyolddude]

Two suggestions, use your CPAP while awake watching TV, reading etc. to acclimate yourself to it. If you have to move around and can't be tethered to the machine, just wear the mask. Also, make sure your lowest pressure setting is at least 6. Many folks have problems when the machine has a default pressure of 4 for the ramp setting.

[muskyjack]

Yes look at what pressure setting(s) are set at. It seems the people who get issued a Plus also tend to have a problem with the pressure and/or ramp set too low along with a variety of other things that sets them up for failure. There seems to be a better chance of not getting proper DME service when a consumer gets issued a Plus which makes compliance go down.
From what I have read on this forum many of the DME folks who issue the Plus also want the new user to that the supplier and/Doc. are the experts that are not to be questioned. Or should I say pretending to be experts to the sleep deprived. Glad that you have taken the next step to be proactive in your health by asking for help.

[Jollie]

I have been diagnosed with sleep apnea. Which is getting progressively worse. The support that I received from the sleep lab was basically how to use the machine. They keep telling me CPAP it works for almost everyone.
I have had my machine for about two years and during this time I have worn it many many times only to find that I cannot fall asleep with it on. I even have have stayed awake all night with it on so many times and never once been able to sleep. I have adjusted the pressure but that seems to make no difference. I have tried sleeping in different rooms including on the couch and a chair. The doctor keeps telling me to keep trying.
I find it difficult to breath in and out after it has been on for awhile then I start to panic and feel I am going to stop breathing for good.
Since the CPAP was not working I have tried other remedies without success. I do notice a slight improvment when the room humidifier is on but that is all.
What has been progressive is the snoring and poor sleeps which have resulted in lack of energy. I have stopped working out and have been steadily gaining weight. It has also put a strain on my relationship as my wife is very tired of waking up all night hearing me snore.
I am willing to try and do anything including surgeries to improve this situation however I have not found success or support yet.
I would give anything to wake up and not feel tired. I have spent so much money on sprays breathrite strips and mouth guards all resulting in failure.
I came across this site in a desperate attempt to find help as I am sure others must have gone through this same problem.
Thank you

[KatieW]

I am willing to try and do anything including surgeries to improve this situation however I have not found success or support yet.
I would give anything to wake up and not feel tired. I have spent so much money on sprays breathrite strips and mouth guards all resulting in failure.
I came across this site in a desperate attempt to find help as I am sure others must have gone through this same problem.
Thank you.

You have come to the right place. I can hear your frustration, and eagerness to get help. Many experienced people here, willing to help. Several people have asked you questions, to get more information, so they can offer suggestions.

Please try and answer them. If it seems overwhelming, print out the page, so you can review each questions. Welcome to the forum.

[jdm5]

I had panic/claustrophobia fears at first as well. My suggestions would be:

• See if your Dr. will prescribe a sleeping pill and/or anxiety medication for a few days, to allow yourself time to get acclimated to the mask.
• As Rustyolddude suggested - wear your mask while reading or watching TV, again to get your body used to it. It was strange/uncomfortable for me to have this gear on and hooked up...both physically and psychologically. I had all kinds of fears/concerns/preconceptions...how would my wife react? Is this totally abnormal? Am I defective? My wife was totally accepting, and it made such a dramatic improvement in the quality of my sleep (and thus my life) that it didn't take long for it to become the "new normal". I now honestly look forward to it at night, given how much better I feel.
• Consider a nasal pillow vs. a mask. I purchased both a full face mask, and also the Hybrid (nasal pillow + oral mask) and haven't been able to sleep with either. I just can't sleep with anything on my skin / covering my mouth/nose. But I have been very successful with the Mirage Swift LT (and also tried the Opus 360, but couldn't get a good seal). Check out http://www.cpapauction.com - MUCH cheaper than retail...but don't bid against me on anything

I don't think you indicated what pressure your machine is set to; that may provide info on why you're struggling. I'm only at 8 (relatively low) and when I first started with it the DME set my machine to ramp up to pressure. They set it to start at 5...but that was so low I felt like I wasn't getting enough air. I adjusted that and within a few days was prepared to just start at 8.

This forum has been incredibly helpful for me - reviewing old threads, and just seeing how others have struggled through issues, and ultimately being successful. Hopefully you'll find success as well.

[Muse-Inc]

...I find it difficult to breath in and out...

This suggests that the pressure is not ideal or you need exhalation relief (drop pressure slightly when exhaling). What is/are your pressures? If the pressure is too low, it's hard to breathe in enough air; when the pressure is high, it's hard to breathe out. Sometimes, if you need a high pressure to stent open your airway, you will fail CPAP and will need what's called a BiPAP (delivers a high pressure on inhale and a much lower pressure on exhale). But for insurance to pay for this type of machine, you must first fail CPAP...in the case of high pressures, docs prescribe CPAP which they know or suspect will not work, then when you fail, they can prescribe a BiLevel machine.

Without treatment, apnea worsens over time; untreated, it becomes dangerous.

...I came across this site in a desperate attempt to find help as I am sure others must have gone through this same problem.

Welcome! You've come to a great place for info.

[Sir-Snorealot]

Hi there,

I am also a newbie to this site and I've got some great support from many people around here. I have been on CPAP only for a couple of weeks now, but I also had a problem using it due to the trouble breathing against the pressure. Initially, I was having a panic attacks while wearing a CPAP mask at night try to fall asleep. I couldn't sleep for few days until I found this god-blessing site. I had to overcome my fear of unable to breath with CPAP mask on, then feeling comfortable enough to fall asleep with the CPAP on me.

I've noticed that you have a machine without C-Flex feature to lower the pressure while you exhale. Can this be your problem? I finally got two nights of sleep in a row since I've got my new machines with an exhale pressure relief. In addition, I also train myself getting used to a C-PAP machine by using it while I was watching a movie or TV while sitting on a bed. It took at least few days for me to feel relatively comfortable to sit without getting a panic attack using the machine I've got from local DME. I am guessing about 3-4 hours for four days in a row with all the lights on. Once I got used to breathing with CPAP on while sitting up (it's generally easier to breath while sitting up then lying down), I started to notice that my mask leaked quite a bit.

I've researched throughout this site and talked to my doctor about my options. I've decided to order items out of my pocket cost because my life is more important than hassling with local DME (great guys, but very limited with selection). Once I've got a new machine on last Monday, it made a night and day difference for me. It's super quiet and my new mask didn't leak at all. I'm still struggling little bit due to a cold (coughing forces me to breath through my mouth to wake me up at night), but getting the machine I wanted was the first step to my compliance, then finding a better fitting mask without the leak was second best thing. The new machine allows me to breath out easier and it almost feel to good to be true. I am still struggling to find right combination of temperature/humidity setting for the room and my machine, but with the support from people here ... I think I probably going to find the right balance. Believe it or not, I found it less intimidating using nasal pillows than nasal masks. Nasal pillows are smaller and tighter fitting around your nostrils (better seals for me), than larger nasal mask around my face. Using my new machine that monitors my breathing patterns and lower the pressure as I exhale, it's less intimidating than breathing against the constant pressure.

What is your pressure setting? Do you have a problem breathing out against pressure? Do you have an anxiety/panic attacks even with the light on sitting down while watching TV?

-Mike

[Cygnusia]

First of all, welcome to the site and taking steps to be more proactive in your own health!

Ok, on to some particulars. First of all, you should take this machine back and demand at least a REMStar M Series Pro machine. Why? First of all, it has C-Flex, which will help you by reducing the pressure every time you exhale. When you're thrown into CPAP usage for the first time (and it sounds like that's exactly what happened with you) breathing against the pressure can feel pretty stifling... I had panic attacks when I started mine, and that was WITH C-Flex! Secondly, you want a fully data-capable machine. All the Plus is going to give is compliance, which is all fine and good for your insurance, but gives you diddly-squat as far as letting you know how your treatment is working for YOU and whether there needs to be adjustments made.

Heck, if you can get them to do it, go for a REMStar PR System One Pro! It's the newest REMStar model, and they've made a number of improvements over the M Series line.

By the way, ALL standard CPAPs, whether they are compliance-only or fully data-capable, use the exact same insurance code. It won't cost you one red cent extra. Your DME provider is pocketing a nice little wad of cash by giving you this model. In fact, CPAP.com lists this particular model as one that's not even in production anymore. If your DME provider refuses to switch out a better machine, give them their equipment back, and demand your prescription so you can take it to a different DME that will be more willing to help you get the therapy YOU need to stay the course on this.

If your OSA is as bad as you say, you owe it to yourself to get what you NEED, not what a DME decides to dump on you.