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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: 624
Replies to This Discussion
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Permalink Reply by Lisa on
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Hi Suzie,
Does the machine you are using give you AI(apnoea index) and HI(hypopnea) numbers or does it just give you number of hours used?
If your machine doesn't give these details can you go back to your clinic and get them to loan you one that does?
I am a long time PAP user and last year I started to get a lot of problems with masks and leaks and pains from swallowing air - so I totally understand how you are feeling.
The machine I was then using didn't give me numbers, had a ramping facility and pressure was preset by the clinic. Clinic loaned me a machine that gave detailed information and was auto adjusting instead of at a preset pressure.
In my case leaks were happening when my preset pressure was too low- if I had an apnoea or hypopnea the machine was then overcompensating and blowing too much air at me. I was also doing a lot of breath holding.
I had to pay something towards the cost, but I have now changed permanently to using a machine that gives daily information not just hours used.
Good luck with getting sorted.
Lisa
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Permalink Reply by Tigers Fan on
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Hi Suzie
I have no idea why, but sores from straps can result from using older headgear. Use a new headgear and wash it is a washing-up liquid solution to prevent oil build-up.
Leaks from older cushions are common - and fixed with new, soft, pliable cushion. Also, try re-learning to adjust the headgear as if you are a newbie again - the whole loose as possible routine.
Not a doctor so let's use an engineering approach to trapped wind. If it has a free, easy exit, wind will pass naturally. If it's exit passage is blocked, a build-up must occur in your tummy/gut. Good hydration helps regular bowel movements helps eliminate 'gas'. I suspect all PAPers swallow some air but not so many suffer as you are - though it is very common if forum posters are to be believed. Anti-acid tablets such as Rennies are said to help - Gaviscon?
Do you get acid reflux? I'm convinced that is related - your GP can sort that easily.
I wonder if the newbie trick of wearing your mask under pressure whilst watching TV, reading, etc might help you. Get your mind clear and calm about using the rig before you go to bed; you can sort any leaks whilst awake, compis mentis. Easy to say, but taking a calm and reasoned approach is going to be more helpful than getting in a panic and tizz so - relaxing music from under your pillow (pillow speakers from Amazon at £10 - 15).
Final thought - does your machine have Flex or EPR? - making it easier to breathe out. If it does, turn it up to max.
Best of luck
TF
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Permalink Reply by RockRpsgt on
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Does your machine have an auto-mode? As Tiger said a air swallowing or aerophagia is pretty common among PAP users. In my experience this phenomenon is seen more at higher pressures or in cases of over-titration(not always).
How much weight loss is 10 stone? With weight loss we typically see a loss of apneic severity and presssure needs. You may want to have your pressure needs re-evaluated.
http://www.bing.com/search?q=aerophagia+treatment&src=IE-Search...
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Permalink Reply by Kath Hope on
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140 lbs. Hasn't she done well?
Rock said:
Does your machine have an auto-mode? As Tiger said a air swallowing or aerophagia is pretty common among PAP users. In my experience this phenomenon is seen more at higher pressures or in cases of over-titration(not always).
How much weight loss is 10 stone? With weight loss we typically see a loss of apneic severity and presssure needs. You may want to have your pressure needs re-evaluated.
http://www.bing.com/search?q=aerophagia+treatment&src=IE-Search...
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I see good advice has already been given Suzie, but I'll still add my little bit...... On several occasions I've also woken up full of air - so much so that I've not been able to straighten up for a good hour in a morning. Unfortunately, I can't throw any light of why this has only happened on occasions, but I do know it wasn't through any leaks to the mask as the machine told me. I do know that I've not had this problem on autopap though, but I'm aware this could just be coincidence. Have a look on this site at the video I posted about sleeping in the correct position to help get rid of the problem of wind.
I'm also with Lisa in having a machine with the ability to view your sleep data to see what's going on. So many of the hospitals can only supply basic CPAP machines, so when we go back for check-ups they can only tell us how many hours we've used the machine and at what pressure.
Hope you get this sorted so you can get back on the treatment you so deserve after such a great weight loss. Please let us know how you get on, so we can all learn from this.
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OMG that's amazing. I should have asked about the stone thing sooner. I would say it's time for a revale. 140ilbs is alot.
Kath Hope said:140 lbs. Hasn't she done well?
Rock said:Does your machine have an auto-mode? As Tiger said a air swallowing or aerophagia is pretty common among PAP users. In my experience this phenomenon is seen more at higher pressures or in cases of over-titration(not always).
How much weight loss is 10 stone? With weight loss we typically see a loss of apneic severity and presssure needs. You may want to have your pressure needs re-evaluated.
http://www.bing.com/search?q=aerophagia+treatment&src=IE-Search...
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Permalink Reply by Julie on
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Hi Suzie
First a big congratulations on losing 10 stone, that is not an easy thing to do so well done!!! Sorry you are having these problems, it can be so frustrating when you need to use CPAP but instead of helping you receive quality sleep it's stopping you from having the sleep you need. I have used CPAP for two years now and it took months for my brain to accept that this was normal. I used to wake up in the middle of the night with my mask off and I didn't even remember taking it off. I occasionally wake with a severe pain about two inches above my belly button. It does feel like trapped wind or like a muscle that has knotted. I have to get up and walk around for a bit and have a drink of water plus apply a little pressure to the area with your fists which seems to resolve this issue. Sorry to get personal here but do you suffer a little with constipation? Try taking senakot which may relieve any build up in your system, it won't do any harm to try it and see if it makes a difference. Re the mask leakage - when I started to use CPAP I suffered with mask leakage which actually gave me double vision on one eye which was caused by the draught from the mask. I kept adjusting the straps and eventually I only had minor leaks which didn't waken me during the night. About a month ago I started to suffer mask leak problems again. I was using the same mask and headgear as always so wasn't sure why this was happening. I know they always advise that we should keep our masks as loose as possible and that the masks work better that way but I personally found that the reason I was having leakage problems was because my mask was not tight enough and once I tightened it the leakage problems disappeared. Looks like the elastic on my headgear was not as good and therefore not holding the mask as tightly in place as before.
Anyway I'm no expert but if I were you I'd do the following.... I would ask for another full assessment and overnight stay at the sleep clinic. You have lost so much weight that you really need to be re-assessed with all the necessary equipment that is only available as the hospital. Also ask for a complete new issue of mask, liner and headgear and start afresh preferably with the same make of mask that you used before and found comfortable. I use the mirage quattro which I find is pretty good. The hospital wanted to give me the small one but I found the medium is better as I always breath through my mouth and I think my bottom lip was dropped out below the small mask which in turn was causing extra leakage. I always ask for the small headgear which I find less bulky. If you have been off the CPAP for 4 months your brain will have got used to you sleeping without it and it will take time to adjust to using it again. When I first started using it I used to have little panic attacks and just couldn't bear to have this mask on my face but as you will know it gets easier so maybe your brain just needs to get used to it again. If your heart is racing and you don't have any heart problems then it does sound like you are having panic attacks. Also being deprived of sleep can cause anxiety and stress so this might be the cause of some of the problems. I would most definitely ask for an appointment with a respiratory doctor but one who specialises in sleep apnoea. What is the point in sending you to a doc who knows nothing about the condition. Maybe your nurse can give you advice on who the best doc is in your hospital or clinic for sleep apnoea and you can request an appointment with him/her. Re the sores on your chin, the mirage quattro doesn't have a chin strap so if your present headgear does then maybe changing your mask and headgear to a mirage quattro might help.
I remember someone suggesting that you could add lavender oil or mint oil to the little sponge filter on the CPAP machine, think I’ll add a new thread on this sort of thing to see what other people use. I know that you can buy Sleep Pulse Balm which you can place on your wrist or temples which get good reviews from users. I bought some for my friend but haven’t had feedback yet. It can be found at the body shop although it is about £8 so not cheap but again maybe worth a try.
This should be a time of happiness for you after losing all that weight so I hope you get these problems resolved and quickly. My hospital did agree that if I lost a lot of weight they would allow me to come in to be reassessed on an overnight stay at the hospital so please consider this option as I feel it would be useful as they can see what is going on when you are asleep. Sorry for the long winded reply, hope you’re not in a hurry!!
All the very best.
Julie
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Permalink Reply by suzie Stiles on
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Thanks everyone for all your replies and all your suggestions and tips! Sorry its taken me a few days to get back onto here to reply- I haven’t been in the best of humour due to lack of sleep etc and I think I was just totally fed up with it all to be honest.
Anyway I will try to answer all your questions
Firstly I should start by saying which machine and mask I use. it’s a fisher & paykal sleepStyle 600 with Thermo Smart. I also have been using the Flexifit 431 mask and headgear (small).
Lisa - --- AI(apnoea index) and HI(hypopnea) I don’t think my machine gives these (if it does I have no idea where or how to find them). The ramp and pressure is set by the clinic but I have been able to alter the pressure myself this last couple of days and have upped it slightly.
TF --- good point about the headgear. When I think about it my headgear I was using was extremely old and worn (about 3 years old) so I do wonder if that was causing the sores. I now have a headgear and will make sure I wash it regularly now (which I probably wasn’t doing enough before). I have readjusted all the straps as you suggested. I don’t get acid reflux but will try taking a Rennie before bed to see if that helps. Not sure if my machine have Flex or EPR? Please explain.
Rock --- don’t think my machine has auto mode. I do always sleep with my mouth wide open (with or without the cpap) so I guess I do swallow a lot of air! 10 stone, as Kath states , is 140lbs.
Kath -- will check out the video you mention thanks! I always sleep curled up which probably doesn’t help trapped wind!
Julie ---- im not constipated since losing the weight and following a healthy eating plan (thankfully) so that’s one less thing to worry about lol. I have now tightened my mask and readjusted all the straps and it does seem better. I have a small face and even the smallest of small masks doesn’t seem to fit too well. I have to use the full face mask and not a nasal mask. I tried the mirage Quattro mask a while back (or was it the flexi fit HC431 which is similar?!?!) but it left me with raw skin on my forehead ( I suffer from psoriasis and latex allergy).
I did manage approx 4 hours last night without any leaks and only some pain on waking so that’s positive. Will give it another go tonight and let you know how things progress!
Thanks for all your suggestions and support - I really appreciate it!
Suzie xxx
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Hi Suzie
Sounds like you are half way there to getting yourself sorted. You sound just like me, I sleep with my mouth wide open too, although my husband says I don't snore anymore but I sound more like a hoover instead LOL. For this reason I too have to wear a full face mask although I did find the Mirage quattro (small) too small for me. Pity about the psoriasis and latex allergy, I assume that the raw skin on your forehead was caused by the forehead cushion on the mask. I'm not sure what that is made of but I'm sure a cotton cover could be made or bought to cover it so that it doesn't touch your skin. Kath used to sell some forehead strips that went with mask liners but don't know if they are sold separately. The reason I say that this mask might be worth a try is because they advertise an extra small size which hopefully your nurse could buy for you. I suffer with eczema but fortunately the materials used on this mask doesn't affect me. I've pasted below details about the mask which I though would give you some useful info. I have tried only one other mask which was a gel one and it was awful, only used it once and really struggled with it. Still think your hospital should give you a full test again, maybe you don't need CPAP anymore? If that's not the case then the specialists should set your machine to the correct pressure. The pressure on my machine is around 13 or 14 but this was set by the hospital nurses.
Anyway take care and sleep well!
Julie
This ResMed Mirage Quattro full face CPAP mask combines the improvements introduced over three previous versions, making this fourth generation full face mask one of the best fitting and most comfortable around. Some 95% of sleep apnoea patients trying this mask were able to utilise its unique features to achieve a personalised fit.
ResMed has been leading the development of full face (covering the nose and mouth) CPAP masks for some time and the Mirage Quattro is the preferred solution of many sleep clinics and patients for mouth breathers. With ResMed's Spring Air cushion technology, this mask is suitably forgiving of movement during sleep and provides an effective solution for those who find their jaw drops open during the night.
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95%! I am not saying that the quattro has not been the #1 FFM but this number is high.
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Yes, I think Resmed have exaggerated the figure of 95% too! I have 2 sizes of that mask and hate them both. The only size I've not tried is the large, which would drown me anyway. I have lots of customers seeking out comfort products for that mask too, and it's the nasal pad cushions that people seem to need for the bridge of the nose problem, as well as the cream. However, the new Quattro FX has been talked about elsewhere with excellent reviews (I've still not tried it myself). We all need a made-to-measure mask really, but it's a bit far to go to Australia for this service ;)
Rock said:
95%! I am not saying that the quattro has not been the #1 FFM but this number is high.
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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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