3 years trying but still no success

[Hamuchan]

I'm writing this post in search for some guidance, assistance, motivation, hope, encouragement, a slap in the face, a reality check, a wake up call....and so on

It's been about 4 years since I was diagnosed with (obstructive) sleep apnea (AHI 45). The first year I spent in denial with the belief that the readings from my test were simply an artifact that came from one of the worst nights sleep I had ever had. Sleeping with all those leads and mask on for the first time in my life was difficult. Still is.

The reason I was in denial is because I don't fit the normal profile of someone at risk of sleep apnea.

Back then, I was 35 years old, weighed 72.5 kg (5ft 11), BF% ~10%, heart rate <50bpm, BP 105/65.
Now, I'm 39 years old, weight 72.5, BF% ~10%, heart rate ~50bpm, BP 105/65.

Nothing much has changed however, I'm starting to noticed a few changes.

For the last three years I've been trying to adhere to my CPAP therapy with no real success. Unfortunately most, if not every, night I take off my mask just after falling a sleep. I don't think I'd get anymore than 30-45 minutes with the mask on each night. I wake the next morning with my mask off. I vaguely remember taking off the mask however I do not seemed to be able to will myself to keep it on for the full night. On some nights I feel pretty lucid when I take my mask off but I just can't seem to be able to snap myself out of what I am doing to say "put the mask back on". So I basically I have spent everyday of the last three years going to bed, putting my mask on and then waking with my mask off. Without fail, every night I fail I don't really consider it a failure thought as I simply take every night as a new opportunity to try again. It's kinda funny but every night that I go to bed I truly feel that this is going to be the night that I sleep with the mask on all night but it's not . Tonight will be the same.

I've tried a few thing things
-switch from auto-CPAP to straight CPAP
-decrease/increase ramp times
-widen/narrow the pressure variance on auto CPAP
-changed masks. I have used a full face mask, nasal pillo and nasal mask. I'm currently using a nasal mask.
-changed pillow (hard versus soft)
-used a wedged pillow to angle my body at 30 degrees
-mindfulness meditation before bed where I think about falling to sleep with my mask on.
-basic meditation where i focus on the breath
-stocking over my head to cover the mask and to prevent me from easily pulling off the mask
-mittons to making it harder for me to pull off the mask
-tried only allowing myself to be in the bed if I had the mask on. For example, if I took the mask off whilst in bed I would have to go into the lounge room. Then when I returned to bed I put the mask back on and if I took it off again I would have to go back to the lounge room. This only lasted a day. I might try this again.
-sleep medications (ie ambien aka stillnox)
-sleep deprivation (going a day without sleep). I only tried this as a kick start. I thought if I was sleep deprived enough that I would basically fall unconscious and would not have the energy to take my mask off. It worked however it was not practical to do this and the next attempt failed.

Most of the above changes I have trailed for greater than two weeks. In some situations I collected data from my data card to measure the effects of the change. There were some exceptions though, which just scared the shit out of me. For example, nearly chocked with the stocking over my head. I woke and tried to take off my mask, forgot about the stocking and became confused. I gasped and my airways closed over and I started gagging like I had just tipped water into my lungs. Classic lol that one!!

So, what 'little' changes am I starting to notice?
-motor function is sometimes effected (drop cups, spill drinks, stall for 10 or so seconds when I have to press the button for the elevator......)
-no libido
-failing memory
-feel worn out
-mental lethargy
-losing my drive (feeling like I'm becoming lazy)
-mood swings. In general these do not happen when I am around others but do happen when I am by myself.

The most important change is the effect that the above 'little' changes have on other, in particular my beautiful wife. She has been so supportive. She will wake me and politely try to coerce me to put my mask on. She will sit with me to discuss the various different techniques to help me adhere to my CPAP therapy. I really couldn't ask for more. She's just been amazing. I feel that I owe as much to her to stick to my therapy as I owe it to myself.

So, I'm writing this post in search for some guidance, assistance, motivation, hope, encouragement, a slap in the face, a reality check, a wake up call....and so on. I'm reaching out and would really appreciate any assistance and guidance that these forums can offer. I would also love to hear from people with similar experiences as I feel that these would help me feel a little less isolated with what I'm going through.

I look forward to your response.

[Hamuchan]

I forgot to add a few things things

Machine: Remstar AutoCPAP
Pressure: 7-11 AutoCPAP, 9 CPAP
Current mask: Softgel Nasal mask

[Duckie]

It is a I have to do it for my love ones. Then experiment with masks until you find one you like. I think of the hose as life. Without it I won't see my grandchild grow up, Without it I have no energy for family and friends. It is getting in the right frame of mind and then doing it.

[bdp522]

Have you tried wearing your mask during the day while awake? Mask up(with the machine on) during the day, watch tv, listen to the radio,or read to help keep your mind busy. Do this as often as possible as long as possible. It may help you get used to the mask sooner.
Have you raised the amount of your life insurance yet? Your lovely wife is going to need the money when you drop dead because you didn't use the machine and mask.(This would be the 2x4 hitting you!)
Ask your wife to wake you and insist that you put the mask back on...then DO IT!!
No one can force you to do this, if you want to make it work you will.(Here comes the 2x4 again) Of course if you don't want to make it work it won't. You can come up with a million excuses as to why it won't work for you, but no one here will buy that. You need to accept the fact that you have to do this and then JUST DO IT!

Brenda

[Hamuchan]

Wow. Thank you for the prompt reply. I'm very open to both suggestions and criticism (positive and negative) re my journey.

Thank you. I will take everything on board and will definitely try the above suggestions.

[BlackSpinner]

When you are meditating you need to go further "I love my cpap machine and mask" "My cpap machine saves my life" "I sleep deeply and well with my mask on to keep me breathing (or to keep my heart beating)". Listen to your mind as you say these and rephrase to answer the chatter that comes up. You can try writing these and listen to the chatter and rephrase. You need to get to the reason deep down, you need to really deeply believe it.

Get your wife on board to help with praise like "I love it when you wear your mask" and other fun experiments.

[mars]

Hi Hamuchan

Suggest you ask your wife to stay awake and observe you as you fall asleep with the mask on, then wake up , or semi-wake up, and take the mask off. Maybe she will se something that will give a clue as to what is going on.

Also get yourself checked out of "silent" gastroesophegal reflux disease. It may be that acid reflux is disturbing you, and your subconscious is blaming this on the mask. (Or that something else is disturbing you - see above re observation).

Desensetisation may help, as per Brenda's post above.

Wear an oximeter during the night, with the alarm set for a desaturation of less than 89 SpO2. Every time it wakes you it means you have stopped breathing. Time to get your mask back on.

Good luck.

Mars

[DreamDiver]

Both bdp522 and BlackSpinner offer excellent suggestions. Your machine is fairly quiet and is data-capable.

• What do you know about your leak rate? Unknown large leaks are the biggest reason therapy seems not to work. Do you have have the card, a reader and software? If so, check your leak lines. If not, the investment may be worth the better sleep.
• This is a possible scenario: You strap the mask on, and it feels tight in the sitting position. You turn on the machine and fall asleep. Then your face relaxes and muscles change position. Large leaks begin occuring around your eyes, beside your nose, etc. It makes a lot of noise and blows in your face, so you take it off in your sleep and turn over. It's also possible you're leaking out of your mouth without realizing it. If your spouse hears a continuous 'gack' or hiss sound coming from your mouth, that's a sure sign. So is dry-mouth.
• If your large leaks are under control, it may be time to try a different mask - preferably a full face mask.
• Ask your spouse to watch you fall asleep in order to learn what happens. It may offer clues as to what's happening in the crucial minutes when you remove your mask while asleep.

There are also other reasons that can also add up. You might want to get your adrenal function tested and other things like hypothyroidism, etc.

[rubymom]

Wow, you are persistent! That's good. Now to just get over that hump.

Try taping the mask to your face in such as a way as it will hurt a bit to remove it. Then when you feel that pain, make sure you pay attention to it. Wake up! Leave the mask on! Then go back to sleep.

Good luck!

[LoQ]

When you are meditating you need to go further "I love my cpap machine and mask" "My cpap machine saves my life" "I sleep deeply and well with my mask on to keep me breathing (or to keep my heart beating)". Listen to your mind as you say these and rephrase to answer the chatter that comes up. You can try writing these and listen to the chatter and rephrase. You need to get to the reason deep down, you need to really deeply believe it.

Get your wife on board to help with praise like "I love it when you wear your mask" and other fun experiments.

BlackSpinner is right on. I will go further to say that in your post I pick up a strong negativity about PAP therapy:

-tried only allowing myself to be in the bed if I had the mask on. For example, if I took the mask off whilst in bed I would have to go into the lounge room. Then when I returned to bed I put the mask back on and if I took it off again I would have to go back to the lounge room. This only lasted a day. I might try this again.

If you loved the mask, you would not need a "punishment" like this, which is what this tactic amounts to, and you wouldn't be taking the mask off while in bed.

I want to amplify what BlackSpinner recommends, because the fact that you are taking it off every night suggests to me that your subconscious mind is really truly OK with you taking it off. You can't control your subconscious directly, but you can indirectly control it.

Therefore, I urge you to monitor every waking thought. When you have a negative thought of any kind about sleeping or PAP therapy, banish it IMMEDIATELY and replace it with one of the thoughts suggested by BlackSpinner. You need to do this every waking minute, not just during meditation. Meditation is fine, but it can't counter the rest of your awake time thoughts if those are negative. You need to reprogram the subconscious mind. Do not let negative thoughts about therapy make themselves at home in your mind. You can't prevent them from coming, but you need to be on guard at every moment and spot them and evict them immediately.

This includes any thoughts of dread about bedtime.

Find a comfortable mask and then propose marriage to it. Love it like you love anyone else. Take good care of it. Remind yourself constantly that the mask/machine are the things that are going to make you feel better and therefore are in the closest circle of best friends to you.

[Slartybartfast]

I have always believed in the value of negative reinforcement. Get a small fence charger and wire it to your mask, with a PANIC button that your wife controls, should she see your hand going for the mask.

Seriously, it sounds like you need to spend some quality time with your mask as has already been suggested. Wear it while reading, watching the tube, etc. You should soon become more comfortable with it.

The benefits of CPAP are life-changing. Focus on that thought.

[Julie]

And I think everyone's ideas are great (including a lot of your own!). However, I also think it might just be time for you to get (as Dream Diver suggested) a good once-over by your GP and even a neurologist. It's not impossible that other things could be going on incidentally. Symptoms of a million other conditions can look a lot like OSA so we forget that they're 'still' possible and it wouldn't hurt to check it all out. Good luck!

[chunkyfrog]

Have you EVER tried a different mask?
I've heard that mask fit/comfort is the #1 reason people fail to use their CPAP machines.

[williamco]

If heat or touch intolerance is the reason you take the mask off:

1-Cut the mask strap to 25% of its size, this is how:
the area between upper and lower strap, there is no need to it - that is 50% off the surface area on your head
upper and lower strap, you can cut it to half its width and that is another 25% off your head. it works with me

2- put a small fan on front of your face to a level that it can sooth you and not make you catch a cold
3- if you use humidfier, put cold water inside, or even put water inside humidifier and put the humidifier in the fridge till it becomes an ice
that will blow cool air into your face. if you don't use humidifier , use it with ice in a passover mode

If low pressure (which is a high a possibility) makes you feel strangulated as your breathing slow down when you fall asleep:
beginning pressure as 7 is very low and can cause sense of suffocation when you fall asleep
try raising the lower pressure to 10-12 and see how long you will last

[Hamuchan]

WOW! This is a very supportive and amazing forum. I really appreciate all the feedback. Last night before I went to bed feeling comforted by the advice and the thought that I'm not alone.

Guess what. For the first time in 3 or so years I spent the whole night with my mask on. The night was not without a few challenges however I just took these on without being such a wimp.

-I felt like I was awake all night. It was such a long night.
-every time I felt uncomfortable with the mask and struggled with my breathing I sat up and took the mask off, gave myself a moment to regather and then put my mask back on.
-I swallowed quite a bit of air (aerophagia) and the side effects were a bit embarrassing
-on many occasions there was a wheezing sound coming from my mask as a result of condensation gathering at the masks nose vent. To resolve this I had to wipe away the condensation. I've tried a few things to resolve this. I've tried keeping the hose warm by wrapping it in foil and covering the foil with a stocking. I've also turn the dehumidifier down but I still get the wheezing.

So how do I feel today? Despite the fact the I think I was awake all night I feel unusually light and clear heading. This is so different to the usually heavy head and feeling like a trucks hit me. I can't wait to have a look at nights reading using the data card. I'll try and post the snapshot of the data here.

I feel so happy. My wife is equally happy. I'm going to take some of the above suggestion on board tonight.

PS. apologies for any spelling or grammar errors. I'm typing this reply on my iphone