Everyones Take on seeing a counselor?

[Kahfree]

Nightmonkey, Sleepingugly, and zsnorekling,

The only reason I was given a full face mask is because I did tell them that I open my mouth to breath at night and during the sleep study they put those nasal pillows on me and when I opened my mouth the rush of air and my inability to talk caused an immediate sense that I was unable to breath. I refused to use the pillows so they tried the full face mask on me and I only had it on me for about 10 minutes before I did the first part of the study. Because I could not sleep, I never got to do the second half of sleeping with the full face mask on. This means no one, not myself, the doctors, or the techs knew how I would respond to ANY mask.

On the day I got the machine, I asked for the full face mask because of the initial reaction I had to the nasal pillows. The DME did suggest pillows and a chin strap, but since they failed to show me what it was and how it worked, I said no because I imagined myself sealed for the night, with no way to open my mouth if I had a sudden coughing attack, felt sick and vomited...(god forbid I cant get that thing off my face!) I do feel that the full face mask is ok, but the pressure on my face and the overwhelming sense of claustrophobia is what is hindering me. I panic and have an anxiety attack. So, I am exploring new options. I need to find what works for me.

With that said, I had purchased online last week the OptiLife Nasal Pillow Mask. It arrived on Saturday, but due to the fact that I stayed out till 4 am on Sunday, I did not use it. However, last night I had my son and daughter help me adjust and put on the mask. I totally love the nasal pillows! My face was free from heavy plastic and tightness. The chin strap worked to some degree I think, I have no way of knowing if I had a lot of leaks due to opening my mouth till my machine updates about 10 am with last nights stats, but the good news is my machine shows I slept 5 hours with it and at 5 am I took it off. That's a huge difference from the 1.7 hours the night before with the full face mask and the 1-3 hours of use all the other nights. I do not recall waking in the night to gasp, or to feel panicked. I also used the humidifier and it was so comfortable that I never had that cold feeling in my throat two hours into the use.

Until I read the stats later this am, I wont know, except I feel good this morning. I don't feel overly tired, but it could be my imagination. I will update. Perhaps, and this is a huge hope, I found the right solution? I may need a better chin strap though, which is ok with me if this works.

Kelly

[JohnBFisher]

First, before you head the counelor route, which I think can help ... I wonder if you have explored WHY you feel these panic attacks? So, here are some questions that might trigger some thoughts

Do you feel closed in?
Do feel you can breathe freely?
Does the mask irritate your skin?
Do you just have a panic attack with the mask?

Let's explore each...

Do you feel closed in? In other words are you claustrophobic. It's fancy word that basically means you don't like to feel as if you are trapped. I suspect there is a strong survival urge behind this particular "phobia". Being confined means you have litle means of escape. Wanting some openness around us could well be engineered into us. Some more than others. So, don't just dismiss it as abnormal behavior. I rather see this as a good survival strategy. One that's so deeply ingrained we don't even think about it.

But putting on a mask fights against that very same urge to have openings. I see from your profile, that you have a Quattro Full Face Mask. I also see from your profile picture that you do not use glasses. It''s possible the piece that goes up over the eyes might very well make your feel very claustrophobic. You might want to try another full face mask that does not have that piece that goes up over the eyes. The Quattro FX, the Mirage Liberty, the Innomed Hybrid, and the Respironics Fit Full Life (as someone else noted) all offer coverage of the mouth and nose without the piece that goes over the eyes.

As others have noted, another way to get used to using your machine is to use it while awake watching TV or reading. This can be a great way to get used to the mask without trying to sleep.

Do feel you can breathe freely? Do you use the "ramp" feature on your machine? If yes, then it's possible that the initial pressure is too low. Sometimes it is better to start your machine WITHOUT using the ramp feature. It does not take long to become accustomed to the normal pressure.

It is also possible the pressure is not high enough to stop obstructive apneas. I've seen people react the same way if the pressure is not high enough. Have you checked your machine to see if your AHI (apnea, hypopnea index) is at 5 or less? If your AHI remains high, you might want to talk with your sleep doctor about this. Continued untreated apneas can also trigger such panic attacks.

Does the mask irritate your skin? Sometimes people are very sensitive to the mask itself against their skin. If that is the source of your discomfort there are Mask Liners you can purchase from REMZzzs: http://www.remzzzs.com/ Every now and then my skin will react to the mask and it leaves the characteristic red, swollen marks. In that case, I use the mask liners until my skin heals. They can be a Godsend.

Do you just have a panic attack with the mask? It's possible that you may just have a panic attack when you use the mask. I don't doubt that can occur. I often struggle with the claustrophobia myself. As a matter of fact, I will switch to the Quattro FX mask to try to make it easier to use my mask. So, if this is a classic panic attack, talking with a counselor might be very helpful.

These are just a few ideas, but I hope it helps you dive more deeply into why you have those panic attacks. I'm not against a counselor. I am just in favor of doing everything you can before or in addition to seeing a counselor. Hope it helps.

[howkim]

I was wandering around the internet a week or so ago and noticed that St. Louis University (something like "Behavioral Medicine Institute") has a subspecialty clinic for helping folks desensitize to CPAP. I don't know how far St. Louis is to you but that might be an option. If it's too far, you might be able to call to see if they know of anyone in your area.

[KimberlyM]

Why don't you try Swift FX or Swift LT nasal pillows? That would eliminate the claustrophobic feeling. I worried that nasal pillows would feel like a strong force of air up my nose, but in truth, I sometimes have to pull them away to make sure the air is on. My guess is, a counselor would work with you to desensitize yourself to the mask. That is something you can do on your own. If panic attacks are a regular part of your life outside of CPAP, that is a different story.

Why don't you try Swift FX or Swift LT nasal pillows? That would eliminate the claustrophobic feeling. I worried that nasal pillows would feel like a strong force of air up my nose, but in truth, I sometimes have to pull them away to make sure the air is on. My guess is, a counselor would work with you to desensitize yourself to the mask. That is something you can do on your own. If panic attacks are a regular part of your life outside of CPAP, that is a different story.

I think Kimberly is on to something.
...

Try a sleep weaver mask.
I have recomended it to several friends and they love it.
You can scratch your nose with it on and won't break the seal.

Bruce...

Wow! Three people with very basic bad suggestions in one thread!

Surely you looked at Kahfree's equipment profile and saw that she is using a full face mask? Full face masks are prescribed to patients who mouthbreathe. If Kahfree switches to a nasal interface and mouthbreathes, then she will have much bigger problems than she has now.

Dudes don't lead people down a disastrous detour on the road to good CPAP therapy!

Please don't jump to conclusions. I was fitted with a Quattro full face mask for my sleep study. They told me they used the Quattro because they had the most success with it, not because everyone mouth-breathes. I specifically had to ask if I could try a nasal mask after being unable to sleep half of the night with the Quattro. If I had slept successfully with the Quattro and found it comfortable, I would have bought one, regardless of whether I needed a full face mask. They fitted me with a full face mask and discovered that I am not a mouth-breather. Many people assume they mouth-breathe because they do with untreated sleep apnea. This is not the case; once treated, they no longer mouth breathe. Kahfree may indeed mouth breathe, but that doesn't mean someone else reading this thread would not benefit from our suggestions. Some people mouth-breathe and tape their mouth so they can still use nasal pillows or a nasal mask. All of us on here have had different experiences.

[jbn3boys]

Please don't jump to conclusions. I was fitted with a Quattro full face mask for my sleep study. They told me they used the Quattro because they had the most success with it, not because everyone mouth-breathes. I specifically had to ask if I could try a nasal mask after being unable to sleep half of the night with the Quattro. If I had slept successfully with the Quattro and found it comfortable, I would have bought one, regardless of whether I needed a full face mask. They fitted me with a full face mask and discovered that I am not a mouth-breather. Many people assume they mouth-breathe because they do with untreated sleep apnea. This is not the case; once treated, they no longer mouth breathe. Kahfree may indeed mouth breathe, but that doesn't mean someone else reading this thread would not benefit from our suggestions. Some people mouth-breathe and tape their mouth so they can still use nasal pillows or a nasal mask. All of us on here have had different experiences.

Well said, Kimberly.

[KimberlyM]

Nightmonkey, Sleepingugly, and zsnorekling,

The only reason I was given a full face mask is because I did tell them that I open my mouth to breath at night and during the sleep study they put those nasal pillows on me and when I opened my mouth the rush of air and my inability to talk caused an immediate sense that I was unable to breath. I refused to use the pillows so they tried the full face mask on me and I only had it on me for about 10 minutes before I did the first part of the study. Because I could not sleep, I never got to do the second half of sleeping with the full face mask on. This means no one, not myself, the doctors, or the techs knew how I would respond to ANY mask.

On the day I got the machine, I asked for the full face mask because of the initial reaction I had to the nasal pillows. The DME did suggest pillows and a chin strap, but since they failed to show me what it was and how it worked, I said no because I imagined myself sealed for the night, with no way to open my mouth if I had a sudden coughing attack, felt sick and vomited...(god forbid I cant get that thing off my face!) I do feel that the full face mask is ok, but the pressure on my face and the overwhelming sense of claustrophobia is what is hindering me. I panic and have an anxiety attack. So, I am exploring new options. I need to find what works for me.

With that said, I had purchased online last week the OptiLife Nasal Pillow Mask. It arrived on Saturday, but due to the fact that I stayed out till 4 am on Sunday, I did not use it. However, last night I had my son and daughter help me adjust and put on the mask. I totally love the nasal pillows! My face was free from heavy plastic and tightness. The chin strap worked to some degree I think, I have no way of knowing if I had a lot of leaks due to opening my mouth till my machine updates about 10 am with last nights stats, but the good news is my machine shows I slept 5 hours with it and at 5 am I took it off. That's a huge difference from the 1.7 hours the night before with the full face mask and the 1-3 hours of use all the other nights. I do not recall waking in the night to gasp, or to feel panicked. I also used the humidifier and it was so comfortable that I never had that cold feeling in my throat two hours into the use.

Until I read the stats later this am, I wont know, except I feel good this morning. I don't feel overly tired, but it could be my imagination. I will update. Perhaps, and this is a huge hope, I found the right solution? I may need a better chin strap though, which is ok with me if this works.

Kelly

Yay!!! I am so happy to see you have found something comfortable for you! I think you are well on your way to successful CPAP therapy! It does take a little time getting used to sleeping longer and longer with the nasal pillows, but I have had a lower AHI and lower leak rate with pillows. Congrats!

[NightMonkey]

...

Please don't jump to conclusions.

OK, let me make a 5% concession and rephrase what I said. If you are suggesting a newbie, who is using a full face mask, try a nasal interface, it would be irresponsible to fail to warn them about mouthbreathing and how it can render their treatment ineffective when using a nasal interface. Agreed?

[Kahfree]

To: JohnbFisher

To answer some of the questions, I do wear glasses but had my contacts in with the photo posted of me.
I also use the ramp feature and really like that is slowly builds up the pressure.
The mask has irritated my skin and its red and dry, but otherwise it was not causing enough damage to my skin to warrant concern.
Yes, I do have panic attacks when the mask is on my face, and when my face is clear, I do not have those feelings of being closed int.

Nightmonkey:

OK, let me make a 5% concession and rephrase what I said. If you are suggesting a newbie, who is using a full face mask, try a nasal interface, it would be irresponsible to fail to warn them about mouth breathing and how it can render their treatment ineffective when using a nasal interface. Agreed?

Yes Nightmokeny, I agree that it CAN be dangerous, but also to be honest I am not sure I am a "True" mouth breather as I have to agree with jbn3boys who said

Many people assume they mouth-breathe because they do with untreated sleep apnea.

Perhaps all the waking up with a dry mouth for the last several years was due to my thinking I was mouth breathing and maybe I did, when trying to get air in each time I stopped breathing during the phase when I was not diagnosed and had no clue what was wrong.

Opinions please.

Kelly
So, my stats from last night are now on my machine. Two nights on the Full Face mask and one night on the nasal are....

Friday Night, Full Face Mask
3.0 hours of sleep
32 AHI
109 Leak

Saturday Night , Full Face mask
1.7 hours sleep
8.1 AHI
47 leak

Last night using the Optilife Nasal Mask

5.0 hours sleep
3.0 AHI
28 leak

I still woke up at 5 am and took the nasal mask off, but I have yet to have a full 5 hours of uninterrupted sleep with the full face mask. I was sleeping so hard that I do not recall dreaming, or moving, or even gasping, which I still did with the full face mask on.
In comparison, the nasal did the work while the full face did not. It is too early to tell as I have to try all week to see what happens, but I am hopeful that its the use of a nasal mask that is going to make me feel better.

[roster]

Mouth leak is experienced by about 40% of CPAP users ( http://www.resmed.com/us/clinicians/com ... clinicians ).
That is a high prevalence rate and since mouth leak can cause ineffective CPAP treatment when using a nasal interface, it is always something to be cautious about.

I am a big fan of full face masks and believe many mouth breathers are getting suboptimal therapy because they are using nasal interfaces. However, since you achieved your best results last night using a nasal interface,

Last night using the Optilife Nasal Mask

5.0 hours sleep
3.0 AHI
28 leak

I recommend you continue with it and reevaluate mouth breathing at a later date.

On the question of seeing a counselor, I think it is much too early in the process to go to this trouble and expense. For many people to master the CPAP process it does take self-education, skill development, and time. And then last night you had a blip up in success and can build on that over the next days or weeks!

Anyway, you have plenty of people here counseling you for free, on your own schedule, and in the comfort of your home.

[jbn3boys]

Very much improved! I think you are on to something!

And thanks for the quote, but it wasn't me. I think it was KimberlyM

I fully agree with the comment, though! I was a total mouth breather before CPAP. Now I use nasal pillows and have NO problems with mouth breathing. Before treatment, I was breathing through my mouth in an attempt to get enough air. Now that I am getting the air I need, I no longer need to mouth breathe.

Here's hoping the nasal pillows will relieve a lot of your issues and you will continue to sleep well with them!

[HoseCrusher]

Kelley, I have been pondering this for awhile now, and will agree what others have said. If you can find a counselor you connect with and trust, you will benefit.

While you are "in process" with this, here is something that may give you some immediate help.

The brain works very hard to answer questions and make sense of things. If you provide it with the proper building blocks, it will put together answers and solutions. The difficulty is providing your brain with the proper building blocks. This may be best illustrated by a quote from Henry Ford. He said "If you think you can, you are right. If you think you can't, you are right."

Pause and think about that for a moment...

You can use this ability of the brain by simply posing questions to it, and having the brain work on the solution. This is where I think counseling comes in. They are trained to understand the brain a little, and can help identify what I call "faulty programing."

This little exercise may help you.

Take a piece of paper and write down some questions. It is important that you actually pick up a pen and paper and go through the process of writing the questions. This tends to personalize the questions. Feel free to compose and edit the questions on the computer, but don't bother to print them out. Simply take a piece of paper and write them down.

You are going to have 2 sets of questions. Morning questions, and Evening questions.

It is important that your questions are in your own words, so I will offer an example, but you need to revise it to reflect your own ideas and words.

Morning questions

What is the biggest issue preventing me from enjoying effective Positive Air Pressure therapy?

What can I do TODAY to eliminate that issue?

How can I model effective problem solving today?

What creative activity can I do today?

Each morning, take your mask off, grab the paper, and read your questions. After you read your questions into your brain, then you can reflect upon how well you slept and what you have going on today. After your morning routine and just before you head out to start your day, pause and read your morning questions again.

Evening questions

After slaying the biggest "dragon" today, am I ready for "Knighthood" into the "Order of the Restful Sleep?"

At what particular moment today did I model effective problem solving?

What creative activity did I enjoy today?

You want to ponder these questions just before you get ready to go to sleep. Like in the late evening. Give yourself some time to reflect upon them before getting ready for bed.

Now, put your mask on and as you drift off to sleep practice this breathing exercise.

With each breath in, say to yourself "I am here." With each breath out, say "I am calm." Don't focus on how often or how deep you are breathing, just relax and focus on "I am here" while breathing in and "I am calm" on breathing out.

Remember, this is a dynamic process. As you slay one "dragon" move on to the next.

I am not a medical professional, so this "advice" may only be worth the price you paid for it, however I have solved a lot of problems using this technique and think it may offer some help for you.

[Kahfree]

While you are "in process" with this, here is something that may give you some immediate help.

I have printed this sheet out and I am going to try it! Thank you, it makes a lot of sense to me. I also agree with Henry Ford. His statement is so true. Your brain is what you make it, weather it is a can or a can't attitude. Either way, whatever you tell your brain to do, it will respond to positive and negative, but which one do I want? Positive! Thank you for the insight!
______________________________________________________________________________________________________________________________________

Very much improved! I think you are on to something!

And thanks for the quote, but it wasn't me. I think it was KimberlyM

I am sorry, I thought that it was you who said it. Thank you KimberlyM! I try to write to everyone in ONE post now because I respond too many times and well, dont want to take up so much space. lol

I fully agree with the comment, though! I was a total mouth breather before CPAP. Now I use nasal pillows and have NO problems with mouth breathing. Before treatment, I was breathing through my mouth in an attempt to get enough air. Now that I am getting the air I need, I no longer need to mouth breathe. Here's hoping the nasal pillows will relieve a lot of your issues and you will continue to sleep well with them!

I am glad you found success in your treatment. I have to agree that perhaps mouth breathing IS a reaction to OSA. It makes sense that those of us who stop breathing and are snoring are opening our mouth.

____________________________________________________________________________________________________________________________________

On the question of seeing a counselor, I think it is much too early in the process to go to this trouble and expense. For many people to master the CPAP process it does take self-education, skill development, and time. And then last night you had a blip up in success and can build on that over the next days or weeks! Anyway, you have plenty of people here counseling you for free, on your own schedule, and in the comfort of your home.

Roster, desperate times call for desperate measures...or so the saying goes. This weekend was not good with my treatment that I figured maybe my next step to achieving a successful therapy with cpap would be to seek help. I do not want to fail. I really want to be healthy and feel better and live long, so I guess with the weekend of very little sleep, avoiding bed to not use the machine, and the panic and anxiety, I began to feel like I was heading into a point of "Cant go on, no return" and feared that without help I would never get "Back on the Horse" so to speak.

I will take your advise and wait just a little longer to see where the nasal mask takes me. If things start to go wrong, I will call my doctor and have a chat to see what I should do next.


Kelly

[Kiralynx]

Kelly,

Lot of good information about counselors there -- something to research.

A little over two and a third years ago, I walked out of the doctor's office crying because of the sleep apnea diagnosis. The only masks I had seen were the plug-ugly triangle things who would cover my nose, my mouth, part of my forehead... I freaked, just at the thought of putting something like that on.

Fortunately, I had found CPAPTalk, and after my husband calmed me down (this was my second Big Bad Diagnosis of the year, the first being uterine cancer, for which I'd had surgery in April), I started researching masks. I picked out some which I thought might work, and then called the sleep center and asked for an appointment with their mask specialist BEFORE my titration. The specialist was very good; I found out from the get-go that I couldn't tolerate straight pressure: I strangled on it, couldn't breathe out against it. I must have tried on a couple dozen masks. At least, in retrospect, it seems that way -- all the ones I had as possibilities, plus a couple the specialist recommended.

My parameters were: no side straps, and no covering my face. We finally narrowed it down to the Comfortlite 2, which worked well for me at the titration, except that they used too high an exhalation pressure, and my mouth kept popping open.

I struggled with leak rates after I got my machine. Tried the "taping" that so many people use around here and went through the roof in panic. My mouth was covered. I couldn't open my mouth!

I looked at chin straps, and ruled every single one I saw out. Big wide, horrible bands of elastic, wrapped around my face, closing me in.... not to mention drowning me in sweat.

So, I designed my own. I bought a 4" diameter cylinder of closed cell foam, and cut a 4" piece off it. I used an apple corer to cut a hole through the center of the cylinder. I wrapped it in fleece and secured it with velcro. I stitched up another piece of fleece for a strap and put velco on the ends. Then I put the strap through the center, and secured it under my chin, like a "brandy keg."

Voila! Almost no strap around or on the sides of my neck. Nothing going over my head. Just a firm prop to keep my chin up, and if I tipped my head back, I could easily open my mouth. Or I could push the cylinder like a bead on a string to one side.

This let me use a nasal pillow mask -- and the CL2 (and later, the Headrest) didn't have the straps all over my face. I also, using the data from my machine, was able to determine that my EPAP was too high, and spoke with the RT and my doctor and had it officially lowered. This significantly reduced the strangling feeling, because I could now swallow.

One thing which I did -- pre-CPAP, I always had a small bedside fan blowing over the bed and across my face. I continued this, and the gentle play of air across my face told me I was not trapped, was not tied in by mask and all.

I hope your new nasal mask continues to work for you. I post this to let you know that it IS possible to deal with that terrifying closed-in-ness.

I had to deal with it all over again a few months later, because I had to go to a full-face mask (the Zzz-mask, which I rigged with a CL2 strap) during a bad respiratory infection. I hated the plastic, the silicon, all over my face, but I made my own mask liners and persevered.

I just acquired a Hybrid, and again had to make my own mask liners. I'm in the middle of my annual respiratory infection, coughing and hacking. But using a full face, with humidity on HIGH (5), helps the coughing. So far, the Hybrid is better than the Zzz. Even coughing my fool head off, I'm keeping the mask leaks within normal range.

You WILL get there. Whether you do it on your own, or need a counselor, or just help from folks here -- you CAN do it!

[charliemack]

Do not see a counselor if you can help it. Here are some thoughts,

There are thousands of people in CPAP therapy all over the world using some type of mask with their CPAP machine. Many of those people have been on a CPAP machine for years. New technology has improved the machines and mask design to make them safe.

Myself, I said what do you want to do, live or die? To live means to wear the mask at night. So, I told myself using air to save my life is fantastic. So, I put the mask on every night and don't even think about it.

To help relieve the facial irritation try a product called Remzzzs. Check it out on their website. I use them and found they soak up the oils that are secreted during the night and keep the mask from having leaks caused by that situation.