Sleep Apnea

[LadyWithEDS]

Has anyone else got this?

I picked up the machine today, and have had it on the last two hours when watching TV. This feels very strange. I have the mask that covers the mouth and nose. I keep getting itchy in the nose and chin and have to keep taking it off to itch.

I was told the sleep apnea is severe and my oxygen levels went down to 60%. I was not dreaming for years. I am so very much looking forward to knowing what it feels like to wake up refreshed and I so want a load of dreams. I feel quite excited about waking up tomorrow morning. I hope that my heart and blood pressure will go back to normal now. I also hope that the other problems I have are related to the sa and that they will get sorted out, for example the visual problems, fingers crossed.

I have to say it is not nice having this mask and machine on, and the idea of having it for life is not pleasant. I keep thinking of the improvements it will make in my life, and it means I will not loose my driving licence which was a big worry of mine.

Apparently I won't be cured of sleep apnea if I loose weight as carrying excess weight is not the cause in my case, the cause is due to having EDS, so for me this is a life time treatment.

It would be nice to speak to someone else who has been through this.

I have very mild sleep apnea and I was using a machine with nasal pillows but I gave it back as I was finding it impossible to even get to sleep with it on and as mine is mild, it's not really a necessity.
The gel mask may be worth a try and if you don't have a humidifier attachement, it is well worth getting one.

Mouth breathing is a nightmare - even with the humidifier it's still not great.

Has anyone tried this mask? The technical guy said that it takes a while for a humidifier to be fitted, and even that comes with it's own problems, that they start you on the most basic and see how you go.

It looks a bit claustrophobia inducing but someone on the Hope2Sleep forum said they would not be without theirs and it was the most comfy one they'd ever had.

My machine came with an inbuilt humidifier and I can't imagine how dried out you would feel without one.

Sorry I've not been back, but it seems everytime I try to help someone on here (have done this several times for other people) the administrators remove my posts. My account has also been deleted in the past too! The only links I ever put are to help people, but it seems that I'm not welcome on here. I spend all my waking hours helping people with CPAP problems and if you've read my story on my own Hope2Sleep website (which I daren't put a link to) you'll know that it's common to have problems with the first mask you're given. Before I found the Respironics FitLife mask, I had terrible problems and I'd tried practically every mask on the market at the time. However, remember that whatever you read, what mask suits one person doesn't always suit another. Most NHS clinics have lots of different masks available, but of course it depends on what area you live in as to what range is available.

Before I go, and perhaps get deleted again, I just want to warn people on here that many children have undiagnosed sleep apnoea, which causes damage to their brains due to oxygen depravation with the apnoea events. These children often grow up with ADHD symptoms, trouble concentrating in class, difficult behaviour etc. The good news for children though is that often the removal of tonsils and/or adenoids often cures them, at least until adulthood.

Hope you get your mask problems sorted OP, but hopefully you know where to find me for any further help - the Hope2SleepGuide Forum, Facebook, Twitter, Linked-In, Google+ Oh, and of course we do sell comfort products and masks on the main Hope2Sleep website, but I would strongly suggest not buying a mask from any website (including mine) unless you know it will work for you. I have a cupboard full of unworn masks that were useless for me - all of which cost a lot of money!

Best Wishes to you all (and probably goodbye)

Kath Hope
Hope2Sleep

oh Kath, I hope your post stays this time, it may help someone else with these problems. I suggest that you don't advertise your firm and the posts will stay!

I am bad, I used the machine all night, I knew I could have a sleep in this morning, so from 8am to 9am I took the mask off, to have some decent uninterupted sleep, it was lovely, I stayed on my side and my dd was up watching tv next to me, incase I went on my back. The interuptions from the slipping mask, knocked by movement, air leaks and dribble is bad.

It is dry with the machine, I have loads to drink before going to sleep and then I have to wake to go for a wee, and then loads to drink in the morning! I don't normally need a wee in the middle of the night!

Hi Lady just saw this, my DH wears the full face mask and he has the dry mouth problem. He usually goes to bed with the mask on and takes a big bottle of water with him, wakes up around 3am and takes it off, has a drink and goes back to sleep without it. It's not ideal, but he says the few hours 'good' sleep he has with the mask on make all the difference, and the few hours comfortable sleep afterwards without the mask make him feel like he's had uninterrupted sleep. Hope that makes sense!

Thanks LadyWithEDS.... I'll try to be more careful, although I've never linked to our shop - only the Sleep Apnoea Forum where I thought people would get even more help. Can I ask, is there somewhere to get notifications when someone comments on your post? I've not found that on here.

Can I also ask, is your EDS Excessive Daytime Sleepiness? If that's the case, once you've got your CPAP therapy sorted and your body is repaid back the years of sleep deprivation, your EDS should drastically improve :)

Elhers Danlos Syndrome, it is why I have CSA, the connective tissue in my whole body is more lax than the average persons, so the airway collapes in my case due to EDS.

Did you get supplied with a humidifier? If you tell your NHS provider you're having problems with being dry they should supply you with one. It's my opinion that everyone should be given one as there are always times when they're needed, if not all the time.

There is no humidifier with the machine, we spoke about it and he said they start you off with the basic and will add a humidifier later, though I would have to speak to the dr to get it, not the technician. This is all going to take time to get the treatment right, I have to persever with what I have at the moment so I can keep my driving licence.

Ah right.... will be interesting to hear if you have any positive changes with your Elhers Danlos Syndrome. Central sleep apnoea responds better to BiPap than CPAP. Did you get one?

As for the humidifier, I can't understand why a doc has to ok this (never heard of this before). Try making a 'phone call saying it's impossible to use your machine due to the dryness, and hopefully they'll suggest you get a humidifier.

Good to see you here again Kath, I found your very good forum through your link when you replied to my post. I hope MNHQ will leave it as it was so helpful to know I was not alone out there.

EDS is incurable, there is no treatment other than support for symptoms. The cpap machine should help the constructive sleep apnea.

I plan on speaking to my gp tomorrow if I can get an appointment, which will be difficult after a bankholiday, and the technician when he comes to my house on Wednesday. I don't know why they gave me the basic machine, they said that is what they do in that hospital.

Hope2sleep, what would be the other problem I have having in the night? the one where I am not getting in and expelling a full lungs worth of air in my sleep? I had some awake lung function tests which showed what my lungs can take, and they are not doing that in my sleep.

Glad you're finding the dedicated sleep apnoea one helpful Codandchops. Perhaps this forum gets lots of companies on here trying to drive people to other site, but anyone who know me knows that I'm not like that. My only desire is to help people get compliant with CPAP and raise awareness in the undiagnosed.

That's a shame you have yet another practically incurable condition Lady... Can you confirm whether you have Central Sleep Apnoea, Obstructive Sleep Apnoea or Mixed Sleep Apnoea (both Central + Obstructive)?

sorry I don't know I think it is that the airway collapes, I didn't get a proper consultation with the dr you see, it was very basic and quick. My results were not available for the consultant app I had, and this dr fitted me in at the end of his clinic, he wasn't even my dr, he was the dr that interprets the results and he took me on as a patient on his list after the brief appointment, I was not origionally his actual patient. I saw him after I saw the technician, as I had no clue what was wrong iyswim that needed the machine, I got a call two days before from an admin person telling me to go and collect a machine.

You need to know if you have CSA or OSA. So many people with CSA are put on CPAP which fails, and they don't get proper treatment until they're on an ASV, VPAP or Bi-Pap. It's too lengthy to go into on here, but if you put in a search for 'Central Sleep Apnoea' over on my forum (which I daren't link to) lots of past posts will come up about this which you can read.

I only found out I had this on Wednesday, it is now Monday. It is a lot to come to terms with on top of a lot that I have already had to come to terms with not just health wise. I am processing this in my own pace, I don't really want to think about having the sleep apnea that is caused by your brain forgetting to brethe as well at the minute. I will check it out at some point, and thank you for suggesting I look there. It is quite overwhelming having such a range of emotions, and I am trying to stay calm and distract myself, I have to stay "normal" for the children.

Aw bless you. I was gutted when I found out I had OSA and back then there wasn't the wealth of information available there is now, and there was none of the comfort products available in the UK which we now import to help people. Your first step is to just try to get the mask working for you, and hopefully they'll swap you to a better one very soon. I don't come onto this forum often (just when I spot someone's having a problem via Google) as I have so many other places I'm active on, but if you ever need help, feel free to email me on [email protected].

My DH suffers - well he used to. He had tests and was due to get a mask, but didn't really want one. We found these [http://www.sleeppro.com/] and it changed our lives. He had a terrible snoring problem, which is how we discovered his sleep aponea. he was falling asleep during the day all the time, like an old man. His weight was also something he needed to address.

I don't know if this will help, but wondered if it was worth a try?

Yes, ohforxsake, mandibular devices can be successful at treating OSA, but normally in mild cases of OSA and if it's the receding jaw that's causing the only problem. I have a receding jaw, but my OSA is moderate-severe and is also caused by a large tongue base and large soft palate, so wouldn't help me.

My own dentist has OSA and has used the mandibular device for years. However, on my last visit he said that whilst it's been good for years, he thinks his OSA has got worse now and he's going to have to resort to CPAP.

Great to hear it's helped your DH :)

Just popped in here to ask if you're doing ok in these early days of CPAP therapy LadywithESD?