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Sleep Apnoea Forum Bringing Help + Support to the Patient
Welcome to our Forum - Feel Free to Introduce Yourself Here.
Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers.
Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation. Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.
Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...
Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum. Don’t be shy in posting and sharing, as we’re all in this together and to help each other.
Best Wishes for good sleep!
Kath
Views: 13125
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Great news Glassdaisy and hope you've find the right mask for you now so the good sleep continues
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Permalink Reply by Deborah Wainwright on
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Hi Glassdaisy,
It looks like only park of my message downloaded last time, so I hope I have more luck with this one!
The squeaking can sometimes happen with a build-up of washing detergent or soap.
I would recommend taking the elbow apart and washing it separately from the mask frame and also letting it dry separately.
That could help with the noise.
Debi
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Permalink Reply by Glassdaisy on
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Thanks Debi. The 407 is lovely except I am having a problem with my left eye now! It fits everwhere else lols. My eye is really painful and I think tonight I will cover it with a little patch. Darth vada/pirate.....at least my young Grandson will know who has a good fancy dress. I did my blood pressure this morning and it was 116 over 58, may be the cause of my headache methinks. As the Doc reckoned my blood pressure was high Wednesday morning, I am a bit confused as to what is happening with me lols.
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Permalink Reply by 99 on
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Deborah Wainwright said:Hi Glassdaisy,
after washing the elbow
use vinegar to remove any soap reside that may possibly remain
and it is now easier to rinse with water to remove any smell
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Hi everyone,
I'm new to the forum having just recently been 'officially' diagnosed with severe OSA. I self-diagnosed the OSA about 18 months ago after hearing that OSA can affect memory and cognitive function. I'd been seeing the doctor about that and had been sent for tests including a brain scan but nothing was found. About 2 years ago I started to fall asleep during the day and this had never happened to me before, though I did mostly wake up feeling unrested. I knew I snored but somehow didn't think of OSA until I began to link different symptoms together. I started to use an app on my iphone which confirmed to me that I had periods when I wasn't breathing during my sleep. I bought a mandibular device (or whatever they are called but this made no difference and I seemed to end up spitting it out al the time. I went to the GP because I started experiencing extreme breathlessness and getting colds that I couldn't get rid of. I said I thought I had OSA and talked about the app I had used and even showed them pictures this but as usual with the NHS they said they had to eliminate other causes for my sleepiness and breathlessness before referring me to a sleep clinic.
ONce I finally got referred the nurse told me after the questionnaire that she was 99% sure I had OSA but it wouldn't be diagnosed until I'd had a study and that even if they found something I'd probably have to wait 4 months before treatment could start. In fact, I was lucky and didn't wait that long, perhaps as a severe case they speeded things up. Anyway, more than a year after telling my GP I thought I had OSA I'm now on my cpap trial. It's a two week trial because the nurse was on hols last week and so far, although I've managed to keep the mask on most of the night every night, I've had only one morning when I woke up feeling reasonably refreshed. I have however been feeling less tired during the day, so I'm hoping that will change.
I have a couple of questions I'd like to ask.as I'm going back for the follow up and to be given my own machine on Wednesday.
1. Do you have to accept any machine they offer you on the NHS?
The nurse I saw for the trial ( and by the way I haven't actually met a doctor at the hospital so far, is that normal?) implied that the machine I'd get would be identical to the one I have been loaned. I've been given a ResMed Spirit 8, which a trawl of the web suggests is a machine that is no longer in production. It has the advantage that it monitors contiuously and can change pressure but data can't be downloaded to a computer, it just has a card with a sim in, which doesn't even fit into a sim reader (I tried), so if I get the same machine, I won't be able to monitor anything and I'm not happy with the idea of being left a year not knowing what is going on. The machine is also really noisy and I've read that some are much quieter than others. The noise is not the machine itself but the air blowing from it.
2. Do you have the right to get a humidiifer or does it depend on the individual clinic? I've been waking up with a really dry mouth in the middle of the night and in the morning and my head's not clear in the morning. It's been difficult waking up and rather than waking refreshed after 7.5 hours as I'd hoped I would, I've been sleeping a really long time.
3. Do different cpap set-ups have the vents in different places? My problem with over-sleeping is, I think, either cuased by or at least aggravated by having to cover my eyes with a travel eye mask, whereas I prefer to wake up in the light. I had to resort to an eye mask, because the first few nights on CPAP my eyes got really red from the air blowing into them. The air doesn't seem to be coming from an ill fitting mask but from the vent in the elbow where the mask joins the hose. I've read that this can be attenuated by diffusing the air coming out of the vent but if I can get a machine that is quieter and doesn't do that in the first place, that would be better. Thank-goodness we can research these things on the internet these days. My first inclination was to simply block the vent but I read that it actually stops you from breathing back in the C02 you've emitted during the night.
4, I've read here in some discussions that the height of the machine in relation to your head is important. Is it only important if you have a humidifier? I don't recall being told anything about his when I picked up the trial machine.
IN fact I wasn't told much at all. The nurse set the ramp to 20 mins but I've been having to turn the machine on and off several times because I haven't been getting to sleep within that time and can't sleep with the gale the machine is sending towards me when it starts to work properly. I think that when prodding the machine in the dark I even set it to shorter as yesterday it told me it was on ramp for only 5 mins and I then found that it was actually easy to increase the ramp period myself. The nurse implied I should just take the machine as it was and not fiddle with anything.
I didn't have much confidence in the nurse I saw last time. She clearly hadn't read my notes or it would have been clear that I am a mouth breather; she was going to set me up with a nose mask until I told her that I was sure this wouldn't work ( I was only able to do that because some pre-appt research had told me that the therapy wouldn't work if you breathed out all the air being pumped up your nostrils.
5. Last question, since my mask is only 2 weeks old, are the clinic likely to resist changing it? I told the nurse that my usual way of getting to sleep was to read in bed. She told me not to put the mask on till after I'd finished reading but that wakes me up again. I've read around now, including Kath's guide and heard about hybrid masks that don't obstruct your eyes like the Mirage Liberty. Of course, my clinic (York) may not have that maks but assuming it does, do you think they'll tell me ill I have to wait a year before they can change my mask?
Sorry for sending such an extremely long message right off the bat but I just want to get this treatment working well asap.
thanks in advance,
Bernadette
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I too (or my GP) didn't suspect OSA either Bernadette and spent years and no doubt lots of the NHS' money on various tests and different medication before finding the root of my problem - Severe OSA. Hindsight eh? Will try to answer your questions for you:-
- People are given the machine that their particular clinic supply, and York where you are normally provide basic CPAP machines without data. I think they have moved onto the S9's now, but sounds like they are still using the S8 APAP for their CPAP trials to determine what pressure you would need. If you want a machine that shows data, you would need to purchase your own, and I would recommend going direct to the manufacturer for this who will liaise with the York clinic regarding settings etc. I had to purchase my own machine too as my first clinic, but the one I'm at now issues APAP to all their patients.
- Most clinics will give humidifiers on request, and I believe York do. It's good you're managing 7.5 hours when so new to CPAP, but don't be disappointed you're not feeling the full benefits yet as you no doubt have a lot of sleep debt to catch up on. Whilst there are people who get dramatic overnight results, many of us find gradual improvements.
- You're right you must never block the vent and, whilst I know a lot of people who use eye masks and actually like the darkness, I would hate to use one myself, but speak with your hospital about this problem as different masks have the vents pointed in different directions. Also using a Hose Lift can help with this on many mask by having the hose pointing upwards. It's also important to have the hose elevated with humidification to help prevent 'rainout' (water ending up in the mask).
- You'll find a lot of people have to find things out for themselves, and horror of horrors, some clinics have even told their patients they can use products like vaseline with their masks, which apart from damaging them can be dangerous if inhaled. Anyway, it is more important to have the machine positioned correctly when using a humidifier, and it needs to be below head height, but preferably not on the floor where dust collects or where there is a risk of standing on it. Also, even without humidification, when people have the machine higher they have been known to pull the machine on top of them during sleep.
- Most clinics would be sympathetic in changing a mask when new to CPAP until the patient gets the 'right' one for them. I think York do supply the Liberty as they deal a lot with Resmed.
Hope this helps and let us known how you get on at your next appointment.
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Permalink Reply by Terry Vella on
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Welcome Bernadette, I'm glad Kath got on with all the local advice, the only thing I can add is stay positive and learn as much as you can and ask questions, good luck.
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Hi there,
I can confirm from my own experience at York Sleep Clinic you are likely to be issued with a basic S9 Escape after your initial trial with the S8. I have recently found my own severe condition has resolved itself with weight loss but during my own OSA treatment I only ever saw the Consultant during my initial appointment but if you have any questions get on the phone and speak to one of the nurses who were very helpful to me.
I was a mouth breather and issued with a nasal mask and never had any issue with it as I trained myself to keep my mouth shut and hence no dry mouth. I did have issues with sneezing and runny nose which I suspect was caused by the cool air sensitising the lining of my nose but being stubborn did not want to use a humidifier if I could possibly help it.
Regards
Colin
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thanks Colin,
that's all really useful to know. Were you resistant to a humidifier because of the hassle of filling and cleaning it or does it make the whole procedure even more unpleasant. I can't imagine coping without a chin strap, which looks more uncomfortable than a full face mask. I've tried training myself to sleep with my mouth closed before (just to stop snoring) and it never worked.
I'll let the forum know how I get on after Wednesday.
Colin said:Hi there,
I can confirm from my own experience at York Sleep Clinic you are likely to be issued with a basic S9 Escape after your initial trial with the S8. I have recently found my own severe condition has resolved itself with weight loss but during my own OSA treatment I only ever saw the Consultant during my initial appointment but if you have any questions get on the phone and speak to one of the nurses who were very helpful to me.
I was a mouth breather and issued with a nasal mask and never had any issue with it as I trained myself to keep my mouth shut and hence no dry mouth. I did have issues with sneezing and runny nose which I suspect was caused by the cool air sensitising the lining of my nose but being stubborn did not want to use a humidifier if I could possibly help it.
Regards
Colin
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Thanks Kath,
I'll let you know how I get on. I've had alot of expenses recently so am not in a position to think about buying my own machine at this point, especially until I've found a set up that works. I'm hoping the hospital will say that there has been at least some improvement as I'm travelling overseas on Thursday and want to know that I won't be struggling over there without the possibility of just phoning and getting a fix.
Managed to get up today without a really long sleep and I feel ok, so here's hoping.
Kath Hope said:I too (or my GP) didn't suspect OSA either Bernadette and spent years and no doubt lots of the NHS' money on various tests and different medication before finding the root of my problem - Severe OSA. Hindsight eh? Will try to answer your questions for you:-
- People are given the machine that their particular clinic supply, and York where you are normally provide basic CPAP machines without data. I think they have moved onto the S9's now, but sounds like they are still using the S8 APAP for their CPAP trials to determine what pressure you would need. If you want a machine that shows data, you would need to purchase your own, and I would recommend going direct to the manufacturer for this who will liaise with the York clinic regarding settings etc. I had to purchase my own machine too as my first clinic, but the one I'm at now issues APAP to all their patients.
- Most clinics will give humidifiers on request, and I believe York do. It's good you're managing 7.5 hours when so new to CPAP, but don't be disappointed you're not feeling the full benefits yet as you no doubt have a lot of sleep debt to catch up on. Whilst there are people who get dramatic overnight results, many of us find gradual improvements.
- You're right you must never block the vent and, whilst I know a lot of people who use eye masks and actually like the darkness, I would hate to use one myself, but speak with your hospital about this problem as different masks have the vents pointed in different directions. Also using a Hose Lift can help with this on many mask by having the hose pointing upwards. It's also important to have the hose elevated with humidification to help prevent 'rainout' (water ending up in the mask).
- You'll find a lot of people have to find things out for themselves, and horror of horrors, some clinics have even told their patients they can use products like vaseline with their masks, which apart from damaging them can be dangerous if inhaled. Anyway, it is more important to have the machine positioned correctly when using a humidifier, and it needs to be below head height, but preferably not on the floor where dust collects or where there is a risk of standing on it. Also, even without humidification, when people have the machine higher they have been known to pull the machine on top of them during sleep.
- Most clinics would be sympathetic in changing a mask when new to CPAP until the patient gets the 'right' one for them. I think York do supply the Liberty as they deal a lot with Resmed.
Hope this helps and let us known how you get on at your next appointment.
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Thanks Terry,
It;s lovely to have this forum for support.
Terry Vella said:Welcome Bernadette, I'm glad Kath got on with all the local advice, the only thing I can add is stay positive and learn as much as you can and ask questions, good luck.
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Bernadette, just one thing you want to be aware of with CPAPs, you can use free software to measure how your treatment is going but you need the right CPAP, if you are given a base model, it won't really tell you anything except usage. Depending on the brand you get you want one that is data capable, you will probably get the base model through the NHS, you may want to get some advice from Kath regarding this as I know she has been down this track. A lot of us take our own therapy into own own hands and can do so if you can get a data capable CPAP. Just a hint
Bernadette Plunkett said:Thanks Terry,
It;s lovely to have this forum for support.
Terry Vella said:Welcome Bernadette, I'm glad Kath got on with all the local advice, the only thing I can add is stay positive and learn as much as you can and ask questions, good luck.
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