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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: 622
Replies to This Discussion
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Permalink Reply by Julie on
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Hey Suzie, sounds like your energy levels aren't too bad judging by all the fence painting you've been doing. I usually wash my headgear once a fornight in plain old fair liquid and give it a good rinse in warm water then drape it over the towel rail to dry. I think my hospital suggested once a week but I find once a fortnight's fine. I use CPAP cittrus wipes which Kath sells for £10 a tub which gives approximately 62 wipes so the tub last about two months. I use one wipe each morning to freshen up my mask. They're really good as they lift any natural oils which get on the mask during the night. I do wash my face each night with a non oily foam wash so that my mask has a good seal. Each week I wash all parts of my mask (except the headgear) and the hose again in fairly liquid (antibacterial) and I find it works a treat. Then leave everything to air dry. I've just received a new mask to replace the one I've had for 2 years although I have the silicone part of the mask replaced every 6 months and my hospital are happy with that. Only thing I would advise is not to put any part of your mask or headgear in very hot water, hand hot is adequate.
Re feeling knackered, my concentration is suffering a little at the moment so just as well I'm not a brain surgeon :) but I'm sure this is just a blip...maybe more time in bed would help and that's where I'm going now!
If you can have a full hospital stay sleep test, I'd go for it.
Sleep well.
Julie
xx
suzie Stiles said: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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Permalink Reply by Kath Hope on
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That's a great sign Suzie - you painting the fences all day just with 4 hours of quality sleep. Just wait 'til you're having 7-8 hours of quality sleep and there'll be no stopping you LOL.
I think it would be great you getting another sleep study with all the weight loss, but also as things can change due to so many other issues (in women going through menopause for one - though I'm not saying you're of that age yet LOL).
So pleased you're finding this forum of help, which was exactly my intention, and please feel free to start any new discussions no matter how silly you think they are. When people post discussions, it not only helps the person, but it helps oall those others who come on here, but are perhaps too shy to join in.
Regarding the cleaning of the masks (as well as for hygiene issues, it's of vital importance for a good mask seal) I absolutely swear (and hundreds of other customer do by their repeat orders) by the CPAP Cleaning Wipes and Sprays we sell at Hope2Sleep and I personally never soak the silicone/gel parts of the masks in water. I'm fully aware that some manufacturers advise cleaning in water and detergent, but if you're using something like Fairy Liquid then after a while it tends to build up a coating of residue around the seal, which stops the mask sealing as well as it did when new - maybe that's why the manufacturers want us to use it so they sell more ;) If funds are low and you must use a detergent, it would be better to buy the cheapest washing liquid out there without all the extra conditioning additives etc. Never ever use wipes or anything containing alcohol, as these will damage the masks! What I tend to do is use a wipe every morning when I wake up and leave the mask to dry on my hose lift hook, as no rinsing is required. Once a week I use the spray which gets into every nook and cranny, and I also spray some into a bowl of hot water and pour it through my hose tube.
Your other question of when to replace the masks is interesting, as most manufacturers state to change the mask, or at least certain parts of it every 3-6 months, yet most of us only get yearly appointments so our masks are expected to last a year, hmm!! I have to say though, that with my cleaning methods, my masks last longer than 6 months, even if the headgear wears out before then!
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Yes, that's always been my argument about the full face masks - the fact that the chin is pushed even further back for people like myself who have a receding one, thereby making apnoeas worse. The mask I'm using at the moment is the Respironics Fit Life, and I'm able to place the bottom of the mask under my chin (even though that's not supposed to be how it's worn LOL) which is stopping this happening.
One question I've never had answered properly is the fact that, "in someone like myself who could not breathe through their nose before my nasal surgery, what would happen if they used a nasal mask with a chin strap? I'm sure I'd have suffocated as I simply could not breathe through my nose before the turbinates and septum op. (I'm now trying to re-train myself to be a nose breather after a lifetime of breathing through my mouth).
Rock said:
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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Permalink Reply by RockRpsgt on
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Kath. In that situation you would still breathe through your mouth. I see this quite a bit. Unfortunately if the humidity trick does not eliminate the nasal congestion nothing will keep the mouth closed. You gotta breathe and your body will find a way if it is possible. This is why I am against mouth taping. If the chinstrap and humidity don't help tapiing could be dangerous.
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Hi Suzie. Was just sat here thinking about you and wondering how you're getting on now? Hope it's good news!
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Kathy, you are such a mind reader....I was only thinking about Suzie yesterday wondering the same thing. Hey Suzie, hope things have improved for you!
Don;t know about anyone else but I can't stand wearing my mask in this hot weather!!
Julie
Kath Hope said:Hi Suzie. Was just sat here thinking about you and wondering how you're getting on now? Hope it's good news!
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Great minds think alike :) Hope Suzie's doing ok.
I had an awful time getting to sleep last night with the heat. At one point I ripped my mask off and dived out of bed to swill cold water over my face. Anyway, I turned down the humidifier and did manage to sleep after that. It must be awful living with CPAP in those countries with high humidity.
Julie said:Kathy, you are such a mind reader....I was only thinking about Suzie yesterday wondering the same thing. Hey Suzie, hope things have improved for you!
Don;t know about anyone else but I can't stand wearing my mask in this hot weather!!
Julie
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Think we've had it a bit cooler up here although today was a scorcher! I'm feeling cold tonight and it's 20 deg c in here!!! Think I need an early night so off to bed before 12 midnight for a change!
Kath Hope said:Great minds think alike :) Hope Suzie's doing ok.
I had an awful time getting to sleep last night with the heat. At one point I ripped my mask off and dived out of bed to swill cold water over my face. Anyway, I turned down the humidifier and did manage to sleep after that. It must be awful living with CPAP in those countries with high humidity.
Julie said:Kathy, you are such a mind reader....I was only thinking about Suzie yesterday wondering the same thing. Hey Suzie, hope things have improved for you!
Don;t know about anyone else but I can't stand wearing my mask in this hot weather!!
Julie
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Permalink Reply by suzie Stiles on
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Hi Kath & Julie
Awwww thanks for thinking of me!!! :-) xx
Well there's good news and bad news! I was managing approx. 4 hours a night up until last week which was a marked improvement on how things were. I had tweaked the mask, turned down the pressure, upped the humidity etc and that was going ok. Was still getting the problem with the wind but trying to live with it and altered sleeping position, took indigestion tabs before bed, had a milky drink and tried not to eat before bed...... see I tried loads of the things you all suggested! :-)
However last week my cheek was really sore which I couldnt really explain until I discovered I had an abscess!! ended up having to see the emergency dentist and need a root canal job done! Therefore I have not worn my mask all week and suffering the consequences (well the other half is) ....back to being somewhat grumpy again!! Hopefully I will start using the mask again tonight as the swelling and most of the pain has gone so will give it a go! Thankfully it isn't as hot here over in Ireland as the mini heatwave by-passed us somewhat!
Kath - I was going to ask you about the menopause ...you mentioned something about that and it effecting sleep???
Hope you both get a good / better nights sleep tonight!
Suzie xxx
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So pleased to hear from you Suzie and your first paragraph sounded positive, and once you are over the unfortunate problem abscess, you'll be able to carry on back on the CPAP and start to feel better again. It would be so beneficial if you could build up from 4 hours on the CPAP to a full 7 or 8. Just think, there'd be no stopping you LOL.
There is a lot of evidence of how a menopausal woman has a far greater chance of developing sleep apnoea, which stands to reason that those of us who are already diagnosed with it, possibly get worse, and need our treatment adjusted. This is why I'm a great believer of people having software for their machines. Then at least we have the proof that if we're struggling with tiredness and our AHI is high then we need to address it, but if the AHI is low then we need to look elsewhere for the cause.
If you do a quick Google on "menopause and sleep apnoea" lots of info will come up. Here's a good article I came across which explains why the menopause causes these problems:-
Causes of Sleep Disorders
The primary reason why a woman may develop sleep disorders during menopause relates to the hormonal fluctuations that are taking place within her body. Declining levels of hormones, specifically of estrogen and progesterone, affect a woman in myriad ways, one being sleep disorders.
Estrogen and progesterone´s effects on sleep
As mentioned above, estrogen and progesterone affect sleep. Dropping levels of either hormone can cause sleep disorders, although each one affects in different ways. The information below specifies how estrogen and progesterone affect sleep, so please continue reading to understand better how hormonal fluctuations causes sleep disorders.
How a decline in estrogen affects sleep:
- Slows down the intake and secondary production of magnesium, a mineral that helps muscles to relax.
- Linked to hot flashes and night sweats which interrupt sleep cycle.
- Linked to sleep apnea, disturbing breathing during the night.
It's from this website..... http://www.34-menopause symptoms.com/sleep-disorders.htm
How a decline in progesterone affects sleep:
- Progesterone has a sleep-inducing effect. When levels decline, the ability to fall asleep soundly does as well.
- Linked to insomnia, and inability to fall asleep promptly.
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Hi Suzie, Sorry to hear about the abscess, I'm sure it's the last thing you needed. Hope you've managed to get back on the CPAP, at least you won't have to worry about the warm weather ;D We had another cracking day today with only a little shower although not enough to give my garden a good watering so I guess I'll just have to send hubby out instead....hey if cookings my job then the gardens his :)
Have you decided whether you are going for a re-assessment or not? If you get the chance I would take it and that way you may be able to get more than 4 hours of CPAP.
Kath's advice is excellent but I can't say I'm following it at present with a whisky and ginger ale and a bottle of bear in front of me....whisky chasser I think it's called!! So you don't think I'm a ragging alcoholic, the beer was from 6pm tonight and I'm still drinking it and well the whisky just sort of slipped into my hand, hic, hic...shhhh don't tell Kath or she'll tick me off!!
Anyway hope you are doing ok with your CPAP again.
Julie
xx
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