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It's not working. Panicking and need help.
#1
Started therapy 6 nights ago. Current pressure 6.6 to 12.

First two nights went ok, was hopeful and optimistic. But last 3 nights have been bad. The nasal mask leaks when I turn onto my side. I try not to tighten in too much. When I tighten it slightly using the upper straps it pulls up on my nose and there's pain on my septum. If I tighten the lower straps it's very uncomfortable on my inner lip where it presses against my front teeth.

I can barely sleep 2 hours before something wakes me up. After that I'm sleeping in hourly batches. 

Once or twice I think, though I don't remember well, I woke up because in had opened my mouth and air was escaping. It was a very unnatural feeling. 

My AHI is under 1 always but I think the discomfort is not allowing me to sleep. 

I have reached a stage where I can't sleep without the machine due to anxiety and can't sleep with it due to discomfort.

Full panic mode. Those of you who have read my other posts may recall i live in a country where there are no sleep doctors. What should I do?
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#2
I've read through most of your other posts and looked at your data, and it is excellent as far as AHI goes.

Also, finding the right mask is important.  Which nasal mask are you using?  Is there a supplier you can call to try a different type mask?  Have you tried using a chin strap to help keep your mouth closed at night?

I know you said you don't have a sleep doctor, but can you see a regular doctor to treat your anxiety and help you sleep, at least until you get used to the therapy?
OpalRose
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#3
Hi Taha,

I'm sorry that you're having difficulties with your mask.

For the mask leak issues while on your side: I'm fairly new myself, and have just had great success in solving my positioning issues by using a buckwheat pillow. While waiting for it to arrive, I'd taken a bath towel and folded/rolled it up from one end until it was the thickness needed to support my neck (and prevent my jaw and chin from tucking downward). This enabled my head to stay in one position.

Both of these methods allow you to make a little 'nest' for the bulky part of your mask to sit in, which may reduce or eliminate the leaks. Perhaps you can try to accomplish this with your current pillow, or allow your mask to hang over the edge.

If you want to try the buckwheat pillow option, I highly recommend the quality and craftsmanship of my supplier. If you search on Comfy Comfy buckwheat pillow on youtube, the owner has a video demonstrating their various options. She is in the US and they have a sister company in Canada with slightly different offerings; I believe they do ship internationally.

Of course another option is to try a different mask. If you list the one that you are using in your profile, someone with knowledge of that specific model may be able to advise you with some tips or tricks.

Best wishes.
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#4
(10-12-2017, 02:50 AM)taha Wrote: I have reached a stage where I can't sleep without the machine due to anxiety and can't sleep with it due to discomfort.

I know exactly how you feel. The same thing happened to me. You will need to try a different mask, or at least a differet size mask cushion. You will also need a chin strap or a full face mask.

Just hang in there and don't give up. As you adapt things will get better. Sleeping without the machine will kill you.
Sleepster
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
(10-12-2017, 06:38 AM)Sleepster Wrote: As you adapt things will get better.

This!

It really is true. I've only been doing this a few weeks longer than you have, and came back to say this very same thing. Plus I also deal with anxieties - it is really important, as you know, to not allow the anxiety to get the better of you. I know there are times when that is easier said than done (having one myself last night), but hang in there. Like Sleepster said, it is really important to keep trying. And it will get better.
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#6
Hi Taha

I am sorry to read you are suffering so. The previous posts all give great suggestions. I only want to add that, for me, the soft cervical collar really helps to keep my chin up, preventing it from drooping when I start to drift off to sleep thereby causing obstructions and it also helps to keep my mouth shut to help with mask leaks.

The full face mask did not work for me. During this period, I had really massive leaks with large breaks in my sleep night pattern. Unlike you, anxiety with the prospect of an uncomfortable night of CPAP ahead prevented me from falling asleep (I did not have any problems before CPAP therapy but of course woke up with brain fog). When I finally did fall asleep I would be awoken up with mask farts, wind tunnels and also developing infections being in the cold all night.

A change to nasal pillows with continually reducing pressure helped contain those leaks. My sleep is still broken with awakenings 3-5 times are not uncommon but my sleep in between is solid sleep so I do wake refreshed.

Please do not despair, keep with the therapy and with some tweaks of masks/other aids/sleep position you WILL return to your amazing results.

AI
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#7
Tonight I'm going to turn on the ramp feature and increase the EPR to 3. 

Maybe reduce the lower pressure to 5 - 11. I don't mind if my AHI increases a little bit ( its always less than 1.0) as long as I am able to sleep 4 or 5 hours straight.

Last night I didn't take my Ativan which I've been taking at bedtime for the last 2 weeks to deal with sleep onset anxiety, thinking I might not need it any more. I'm going back on it tonight.

Any thoughts?
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#8
(10-12-2017, 09:09 AM)taha Wrote: Tonight I'm going to turn on the ramp feature and increase the EPR to 3. 

Maybe reduce the lower pressure to 5 - 11. I don't mind if my AHI increases a little bit ( its always less than 1.0) as long as I am able to sleep 4 or 5 hours straight.

Last night I didn't take my Ativan which I've been taking at bedtime for the last 2 weeks to deal with sleep onset anxiety, thinking I might not need it any more. I'm going back on it tonight.

Any thoughts?

Hi Tata,


I was thinking of you last night before I went to bed and checked on your original thread for updates. I wish now that I'd followed through on my plan to ask how you are doing.

Your numbers have been so good, but good sleep is critical.

It is likely that you will need a new mask (or at least a different sized cushion). 

There are also some anti-leak techniques where people have use t-shirt material to help make a seal. Perhaps someone will expand on this?

I prefer leaving pressure advise to more senior members, but I was thinking that I would also drop the max pressure to see if the trade off was worth it. I wouldn't drop the min pressure and turn up EPR at the same time (as this effectively doubles up the min pressure drop). I'd personally lean towards only dropping the max pressure to see how that goes.

I hope it goes netter for you tonight.

Best,

Bill
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#9
(10-12-2017, 09:55 AM)Spy Car Wrote:
(10-12-2017, 09:09 AM)taha Wrote: Tonight I'm going to turn on the ramp feature and increase the EPR to 3. 

Maybe reduce the lower pressure to 5 - 11. I don't mind if my AHI increases a little bit ( its always less than 1.0) as long as I am able to sleep 4 or 5 hours straight.

Last night I didn't take my Ativan which I've been taking at bedtime for the last 2 weeks to deal with sleep onset anxiety, thinking I might not need it any more. I'm going back on it tonight.

Any thoughts?

Hi Tata,


I was thinking of you last night before I went to bed and checked on your original thread for updates. I wish now that I'd followed through on my plan to ask how you are doing.

Your numbers have been so good, but good sleep is critical.

It is likely that you will need a new mask (or at least a different sized cushion). 

There are also some anti-leak techniques where people have use t-shirt material to help make a seal. Perhaps someone will expand on this?

I prefer leaving pressure advise to more senior members, but I was thinking that I would also drop the max pressure to see if the trade off was worth it. I wouldn't drop the min pressure and turn up EPR at the same time (as this effectively doubles up the min pressure drop). I'd personally lean towards only dropping the max pressure to see how that goes.

I hope it goes netter for you tonight.

Best,

Bill

I'm extremely touched by your statement. Thank you so much for keeping me in mind. Goes to show the amazing folks that make up this group. We are all in our own ways facing our own hell, yet people take the time to help each other. That in itself wants me to keep going. To try and some day post a success story and help others. 


I'll take your advice and see if lowering the upper pressure has any benefits.
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#10
(10-12-2017, 10:07 AM)taha Wrote:
(10-12-2017, 09:55 AM)Spy Car Wrote:
(10-12-2017, 09:09 AM)taha Wrote: Tonight I'm going to turn on the ramp feature and increase the EPR to 3. 

Maybe reduce the lower pressure to 5 - 11. I don't mind if my AHI increases a little bit ( its always less than 1.0) as long as I am able to sleep 4 or 5 hours straight.

Last night I didn't take my Ativan which I've been taking at bedtime for the last 2 weeks to deal with sleep onset anxiety, thinking I might not need it any more. I'm going back on it tonight.

Any thoughts?

Hi Tata,


I was thinking of you last night before I went to bed and checked on your original thread for updates. I wish now that I'd followed through on my plan to ask how you are doing.

Your numbers have been so good, but good sleep is critical.

It is likely that you will need a new mask (or at least a different sized cushion). 

There are also some anti-leak techniques where people have use t-shirt material to help make a seal. Perhaps someone will expand on this?

I prefer leaving pressure advise to more senior members, but I was thinking that I would also drop the max pressure to see if the trade off was worth it. I wouldn't drop the min pressure and turn up EPR at the same time (as this effectively doubles up the min pressure drop). I'd personally lean towards only dropping the max pressure to see how that goes.

I hope it goes netter for you tonight.

Best,

Bill

I'm extremely touched by your statement. Thank you so much for keeping me in mind. Goes to show the amazing folks that make up this group. We are all in our own ways facing our own hell, yet people take the time to help each other. That in itself wants me to keep going. To try and some day post a success story and help others. 


I'll take your advice and see if lowering the upper pressure has any benefits.

Quite so Tata. 

For myself, I hoped to be one of those "success stories" just through diligence, compliance, and some guided fiddling with the pressures. But after a year on APAP, where I've had enough Centrals to feel wiped out during the day, I'm about to start a new adventure with an ASV machine (that I hope is the answer for me).

For you, the good news is your numbers have been spectacular. Now to get you better sleep. There are really smart and kind people here who will help you (as they have been helping me).

As others have said, getting a mask that works can be the trickiest part of the journey.

Keep posting. Collectively a solution will be found.

Bill
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