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Sleep Apnoea Forum Bringing Help + Support to the Patient
Advice needed please!
I need help ---(sorry long and rambling post - I will try and stick to the basics)
I was diagnosed with OSA 4 years ago. I was having 35 apneas an hour. Took a while to get used to my cpap machine but eventually was using it most nights with an average usage of 5.7 hours per night. My pressure was set at 9.
Had no problems for 3 years - lost 10 stone in weight and life (and sleep) was brilliant! However last august I started having various problems. Firstly my head gear started to rub huge sore patches on my chin and side of face (which it had never done before). They patches have never really healed and really put me off using my machine for months ( I eventually got some chin straps from Cath and this has helped a little). At the same time I started to wake up in the night with not only leaks around my mask but also incredible pains in my chest/tummy which felt like trapped wind! Before that if I ever woke in the night I would just turn the ramp down on my machine and drift back off quite happily but the pain now had me ripping off my mask and rolling round the bed in agony.
Went back to GP who didn't have a clue and refereed me back to hospital where I had my sleep study. Saw a doc in the respiratory clinic who really didn't have a clue at all about sleep apnea and just referred me to see the sleep clinic nurse. Whilst this nurse was very willing to try and sort out the problem (gave me different masks to try, reset my pressure to 6, eventually gave me a new cpap machine) nothing has really worked. I haven't used my cpap for the best part of 4 months now. Every time I try I still end up waking up after about 4 hours with leaks coming out of everywhere on my mask, and incredible pains in my chest and tummy. I tried again last night but still the same. Ended up in tears of pain & frustration and awake since 4 am!! I know I need to use my cpap every night as all the signs are my sleep apnea is getting worse again. I don't know if its stress and or something else but I actually got quite frightened when I woke this morning as it took nearly an hour to try and slow my heart beat down to something that felt normal and to get rid of the wind that had built up in my tummy..... this can't be normal??????????
Any idea's as to what I can do/try next? I'll try anything!!!!! I'm loathed to go back to the sleep clinic nurse - as good as she is I don't feel she is actually qualified in sorting out this problem. She is great for handing out masks, machines etc but anything technical seems beyond her. I did have a pulse ox text done a couple fo weeks ago which she said was fine - no details given even though I had ripped my mask off half way through the night.
Thanks in advance
Suzie xxx
Views: 659
Replies to This Discussion
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Permalink Reply by Kath Hope on
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I should have said that bad sleeping isn't really ideal for us sleep apnoea sufferers, as it can actually cause more apnoeas, so have another look at the video to try to get yourself in the side position he shows towards the end. I'm sure you know about the fact of trying not to eat within 3 hours of bed, as this can cause us problems (says me who's just had a little 'healthy' snack), and also cutting down on your drinks, especially fizzy ones. It's best to just sip water before bed.
Its sounding more positive now though, and unfortunately, you're again at the position of working towards comfortable sleep like most of us work hard to do when we're first put on CPAP. However, as the saying goes "there's no gain without pain" so I'm sure very soon you'll start to feel better now you're getting more sleep. I always remind myself when things go wrong in the night, that all over the world, other people are going through the same trials! Keep us posted Suzie!
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Permalink Reply by Tigers Fan on
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Not 95% of all PAPers but " 95% of sleep apnoea patients trying this mask" and that percentage can only be of those who tried the mask where Resmed could monitor the results - their own clinics.
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Permalink Reply by RockRpsgt on
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In my experience I would say it goes the other way. 95% of patients who try theFull Face Mask(FFM) hate it! LOL I do not even attempt to put one of these masks on a pt until all other options have failed.
Tigers Fan said:Not 95% of all PAPers but " 95% of sleep apnoea patients trying this mask" and that percentage can only be of those who tried the mask where Resmed could monitor the results - their own clinics.
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Permalink Reply by Julie on
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Hi Rock
I'd be interested to know what your first choice of mask would be and do you have a suggested very small mask that Suzie could try? This was the first mask I was given and have only tried two others which have been hopeless. I do have some mask leakage with the marage quattro but according to readings taken when using an APAP machine from my hospital, it has reduced my apnoeas massively. Kath was good enough to have a look at the copy of the reading I received from the hospital so gave me a quick rundown on the results. I may ask my hospital about the Quattro FX that Kath mentioned but if there are masks out there that you feel would do a better job then I'd love to hear about them.
Thanks
Julie
Rock said:In my experience I would say it goes the other way. 95% of patients who try theFull Face Mask(FFM) hate it! LOL I do not even attempt to put one of these masks on a pt until all other options have failed.
Tigers Fan said:Not 95% of all PAPers but " 95% of sleep apnoea patients trying this mask" and that percentage can only be of those who tried the mask where Resmed could monitor the results - their own clinics.
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I use the Resmed Swift FX, Respironics Easy life, and the Quattro FFM. I switch back and forth between the nasal masks due to nose sore prevention. I use the Quattro when I am sick. I have a Quattro FX on order. The Quattro is a great mask. I have just found that it is typically not well liked when a choice is given. All of my patients are given a choice between the 2 different types of nasal masks. I will do pull every trick in my bag to keep them in one of these types. When all else fails I then go to the FFM. I have been trained to adjust treatment to the lowest needed pressure to prevent breathing events. A FFM requires higher pressures than nasal masks. If not worn properly they will also cause a worsenign of sleep related breathing.
It is my personal opinion that suzie needs to re-evaluated with an in lab study due to her weight loss. I believe that her severity and therapy needs have been greatly diminished.
I am not a doc. This is an opinion based on personal experience. All decisions should be discussed with a trained doc prior to moving forward.
Julie said:Hi Rock
I'd be interested to know what your first choice of mask would be and do you have a suggested very small mask that Suzie could try? This was the first mask I was given and have only tried two others which have been hopeless. I do have some mask leakage with the marage quattro but according to readings taken when using an APAP machine from my hospital, it has reduced my apnoeas massively. Kath was good enough to have a look at the copy of the reading I received from the hospital so gave me a quick rundown on the results. I may ask my hospital about the Quattro FX that Kath mentioned but if there are masks out there that you feel would do a better job then I'd love to hear about them.
Thanks
Julie
Rock said:In my experience I would say it goes the other way. 95% of patients who try theFull Face Mask(FFM) hate it! LOL I do not even attempt to put one of these masks on a pt until all other options have failed.
Tigers Fan said:Not 95% of all PAPers but " 95% of sleep apnoea patients trying this mask" and that percentage can only be of those who tried the mask where Resmed could monitor the results - their own clinics.
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I didn't know the pressure needs to be higher with a FFM (Full Face Mask). If people switch from Nasal to FFM does that mean the pressures should be altered?
In most areas, problems like Suzie's wouldn't be referred to a doc, they'd be under the guidance of a nurse/RPSGT. If a further sleep test deemed necessary, then at least 70% of patients could only be offered another home test, due to the lack of sleep labs.
Rock said:..........A FFM requires higher pressures than nasal masks. If not worn properly they will also cause a worsenign of sleep related breathing.
It is my personal opinion that suzie needs to re-evaluated with an in lab study due to her weight loss. I believe that her severity and therapy needs have been greatly diminished.
I am not a doc. This is an opinion based on personal experience. All decisions should be discussed with a trained doc prior to moving forward.
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Unfortunately I'm unable to wear a nasal mask because I'm a mouth breather which I understand is the case with Suzie and I personally was only offered a full face mask. I find that I very rarely breath through my nose even when awake as it always feels choked. I did try a nasal mask once and I slept really well the first night but the next night didn't go so well, think I was a little choked up. I'd be interested to know how you get on with the quattro FX as I may just be tempted to try it out. Mind you it sits further down the nose and some people are reporting that the straps are too near the eyes but I suppose you need to try it yourself. On a positive note those who have sores on the bridge of their nose might find this mask really useful. The headgear will certainly make sure the mask doesn't move anywhere so maybe it's worth the purchase. Let us know how you get on Rock.
Rock said:I use the Resmed Swift FX, Respironics Easy life, and the Quattro FFM. I switch back and forth between the nasal masks due to nose sore prevention. I use the Quattro when I am sick. I have a Quattro FX on order. The Quattro is a great mask. I have just found that it is typically not well liked when a choice is given. All of my patients are given a choice between the 2 different types of nasal masks. I will do pull every trick in my bag to keep them in one of these types. When all else fails I then go to the FFM. I have been trained to adjust treatment to the lowest needed pressure to prevent breathing events. A FFM requires higher pressures than nasal masks. If not worn properly they will also cause a worsenign of sleep related breathing.
It is my personal opinion that suzie needs to re-evaluated with an in lab study due to her weight loss. I believe that her severity and therapy needs have been greatly diminished.
I am not a doc. This is an opinion based on personal experience. All decisions should be discussed with a trained doc prior to moving forward.
Julie said:Hi Rock
I'd be interested to know what your first choice of mask would be and do you have a suggested very small mask that Suzie could try? This was the first mask I was given and have only tried two others which have been hopeless. I do have some mask leakage with the marage quattro but according to readings taken when using an APAP machine from my hospital, it has reduced my apnoeas massively. Kath was good enough to have a look at the copy of the reading I received from the hospital so gave me a quick rundown on the results. I may ask my hospital about the Quattro FX that Kath mentioned but if there are masks out there that you feel would do a better job then I'd love to hear about them.
Thanks
Julie
Rock said:In my experience I would say it goes the other way. 95% of patients who try theFull Face Mask(FFM) hate it! LOL I do not even attempt to put one of these masks on a pt until all other options have failed.
Tigers Fan said:Not 95% of all PAPers but " 95% of sleep apnoea patients trying this mask" and that percentage can only be of those who tried the mask where Resmed could monitor the results - their own clinics.
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Hi Kath
I can't believe that 70% of patients would only get a home test after losing so much weight. I would have thought that the hospital would need to ensure that the treatment received is correct for the patient and the home tests are not as thorough or so my friend told me. She tried a home test and ended up going in on an overnight stay as the home test was not giving all the information required.
Kath Hope said:I didn't know the pressure needs to be higher with a FFM (Full Face Mask). If people switch from Nasal to FFM does that mean the pressures should be altered?
In most areas, problems like Suzie's wouldn't be referred to a doc, they'd be under the guidance of a nurse/RPSGT. If a further sleep test deemed necessary, then at least 70% of patients could only be offered another home test, due to the lack of sleep labs.
Rock said:..........A FFM requires higher pressures than nasal masks. If not worn properly they will also cause a worsenign of sleep related breathing.
It is my personal opinion that suzie needs to re-evaluated with an in lab study due to her weight loss. I believe that her severity and therapy needs have been greatly diminished.
I am not a doc. This is an opinion based on personal experience. All decisions should be discussed with a trained doc prior to moving forward.
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Hey Suzie, How are you doing? Any further forward? I've been absolutely cream crackered over the last few weeks, so much so that I struggled to put one foot in front of the other yesterday. I've had all the usual bloods taken and it's not related to the usual culprits eg thyroid or anaemia so probably down to SA. It always seems a bit of the roller coaster where SA is concerned, one month I'm knackered and the other I'm doing alright. Anyway hope you are feeling a bit better.
suzie Stiles said:Thanks for your input girls and girls xxx
I managed 3 hours last night with my mask after much tweaking, pulling, adjusting! I've put the pressure up to 8.5, 500 altitude and have turned the heat off the humidifier I think! The only thing that was really bothering me last night was the air seemed really dry so going to try and do that tonight. I did try and sleep more on my back and as you suggested Cath these did to help with the trapped wind but this isnt my natural sleeping position so I kept reverting back to being curled up when asleep.
I think I still need the cpap Julie --- old symptoms were returning :(
I suppose I just have to re-learn to love my machine/mask again after not using it for so long and having so many niggling problems --- it doesn't seem to get easier does it :(
Anyway will keep you updated - thanks again. Off to bed to romance my cpap! xxx
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The reason for this Julie, is that most hospitals in the England don't have the facility to give people an in-hospital sleep study. We don't here in Hull and always have to have home tests. Scotland seem to have excellent facilities which a lot of England lack, although new centres are popping up now.
Julie said:
Hi Kath
I can't believe that 70% of patients would only get a home test after losing so much weight. I would have thought that the hospital would need to ensure that the treatment received is correct for the patient and the home tests are not as thorough or so my friend told me. She tried a home test and ended up going in on an overnight stay as the home test was not giving all the information required.
Kath Hope said:I didn't know the pressure needs to be higher with a FFM (Full Face Mask). If people switch from Nasal to FFM does that mean the pressures should be altered?
In most areas, problems like Suzie's wouldn't be referred to a doc, they'd be under the guidance of a nurse/RPSGT. If a further sleep test deemed necessary, then at least 70% of patients could only be offered another home test, due to the lack of sleep labs.
Rock said:..........A FFM requires higher pressures than nasal masks. If not worn properly they will also cause a worsenign of sleep related breathing.
It is my personal opinion that suzie needs to re-evaluated with an in lab study due to her weight loss. I believe that her severity and therapy needs have been greatly diminished.
I am not a doc. This is an opinion based on personal experience. All decisions should be discussed with a trained doc prior to moving forward.
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Permalink Reply by suzie Stiles on
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evening all :-)
Loving all the discussions here and learning loads of things along the way. In fact I have probably learnt more from Kath and this forum than I ever got from the hospital!
I didn't know about not eating before bed!!! I always have some sort of snack in the evening before bed. I also drink a fair amount of diet fizzy drink! I will have to keep a note of what I eat and drink and see if that effects my sleep. I do know I normally sleep better with a milky drink before bed.
I was never told about using face creams etc whilst using a mask either!!! I think this has, as was suggested, lead to the sores on my neck where my headgear straps rub as since changing to a new headgear its almost disappeared! How often does everyone wash the headgear, mask etc? Whats the best thing to wash/clean your equipment with? How often do you replace them?
I did manage 4 hours last night so thats an improvement! I will carry on with these settings for the time being and hopefully soon I'll be back using my cpap EVERY night and for a good 5 - 6 hours ( as before). Im still debating going back to my GP and asking to be refereed to a sleep consultant and not just back to the nurse with regard to getting a full hospital stay sleep test.
Hope you get sorted Julie ---its horrible when you can't function right!!!! Im pretty sure I must still need my cpap despite the weight loss as old symptoms were appearing again ----not a nice feeling!
Been out painting the fences all day so shattered now ------ thank goodness Im using my cpap again or I wouldnt have the energy for it!!
Good night All and sleep well xxxx
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A home study (HST) would be better than nothing. They're not as accurate as a PSG but some are better than others.
Most of the problems with the FFM come from the way they are worn. Pressure needs to be applied to the bottom of the mask to prevent leaks. This tension typically comes from the base of the skull or neck. This can cause the jaw to slide backwards raising apnea severity. For this reason higher pressures may be needed to compensate.
The majority of us started out as nasal breathers. This is the body's natural way to breathe. Mouth breathing for most is a learned response to a physical problem. I have found that quite a few of these problems can be fixed with higher humidity levels and/or a chinstrap.
When air reaches the airway it needs to have 100% humidity. If it isn't the body reacts by filling the capilaries and activating mucus secreation in our nasal/sinus cavities to humidify the incoming air. This in itself will cause nasal congestion. By adding humidity you can help nullify this process. This works in about 50% of my patients.
Kath Hope said:I didn't know the pressure needs to be higher with a FFM (Full Face Mask). If people switch from Nasal to FFM does that mean the pressures should be altered?
In most areas, problems like Suzie's wouldn't be referred to a doc, they'd be under the guidance of a nurse/RPSGT. If a further sleep test deemed necessary, then at least 70% of patients could only be offered another home test, due to the lack of sleep labs.
Rock said:..........A FFM requires higher pressures than nasal masks. If not worn properly they will also cause a worsenign of sleep related breathing.
It is my personal opinion that suzie needs to re-evaluated with an in lab study due to her weight loss. I believe that her severity and therapy needs have been greatly diminished.
I am not a doc. This is an opinion based on personal experience. All decisions should be discussed with a trained doc prior to moving forward.
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