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.

Is there no one else with Sleep Apnea?

I was going to report back after my first night with the cpap machine.

Haven't any experience of this but how did your first night go. It must have felt so weird being connected up like that and wearing a mask. But hopefully it will be well worth it when you see a big improvement in your S A problems

Turnaday, hi, thanks for asking.

Well it was very uncomfortable. I put the mask on at about 7pm last night and watched TV with it on to get used to it. I kept getting an itchy nose and chin. It took about two hours for my breathing to calm down and for the machine to get to full capacity.

I was a bit panickly with it on at first. I didn't like the extra flaps of the seal that is inside that were flapping around. It took a while for me to trust the tiny holes in the mask let air out and that the value would work. I put the elephants truk bit hoover like tube hooked behind the head board so it was above me, as I was anxious that I would lean on it and cause problems in my sleep.

I would drop off and wake up ever couple of minutes until about 4am, then slept solid and really well until 6am, which is when I normally wake up. I woke up feeling brighter as if not as foggy. I am going to put the mask on again in a bit and allow myself to get used to it before going to sleep again, hopefully I will sleep better tonight, even those few hours of proper sleep last night made a big difference, still no dreams, I can't wait to dream again, it has been years since I dreamed normally, I have one every six months now a days, so I really am looking forward to dreaming again.

It sounds like its going to take some getting used to but glad you are feeling a difference already even after a disrupted night. Hope you manage to sleep longer tonight without waking and that it doesn't feel as alien.

Sweet dreams.

Hi no personal experience but have worked with people who needed cpap and their opinion was the mask and head gear which looks like a fighter pilot is a small price to pay as they feel so much better and quality of life so improved. I'm guessing you have had over night oximetry and sleep studies if they know your spo2 is 60% at times. This is very low for ahealthy adult. I would say stick with it and like anything else you will get used to it in time ad te benefits will be huge. Good luck xx

Chezziejo, yes I had the overnight sleep study done. What exactly does it mean to have low oxygen levels? It is the fighter pilot mask type.

I had it on trying to relax to watch tv, I have just taken it off again, I needed a wee, and I need a good drink again now to moisten myself, as it dries me out a bit.

Hi it's a long time since I was on respiratory ward and I don't want to tell you wrong but I will have a look round and try to find out some info for you that's up to date. I'm no dr tho and the best person to ask would be your consultant or specialist respiratory nurse. Il try and update tomorrow if that's ok xx

Thanks, I won't be seeing the Dr for another four months, and to be honnest with you, I am a little worried that there is a little brain damage that has been done to my eye deep in the brain due to the sleep apnea could that be me being silly? My vision for a long time has been randomly blurry in one eye, and when I went about a year ago to have the eye examined at hospital, they could only find a high eye pressure level caused by a thick cornea, there was nothing wrong with the actual eye or behind the eye, they wanted to see me in a year which is about now, they sent me off having not found out what the problem was.

Maybe I need to speak to the GP about it, the GP didn't even seem to know I had EDS, and mixed up the different types of EDS, I kind of lost my faith in him the last time, and he spoke down to me so that puts me off a bit. I am seeing someone at hospital who was involved in the operation I am having, the CSA was found due to pre op tests, I will have a chat with them first I think.

Op get your eyes seen to by a specialist ASAP.

Dh has a mask. It took some time to get used to but he sleeps so much better than he did. And it's transformational, he has more energy and I can sleep.

Good luck. It's worth it.

Spendthrift, do you think that there is a bit of deep brain damage then to the eye bit of the brain? Does the brain get damage from CSA then?

www.nhs.uk/conditions/Sleep-apnoea/Pages/Introduction.aspx

Hi sorry it took so long to get back to you. This site can probably explain it better than i can. Please note im not a dr so thats why have stuck to the NHS info.

Regarding the brain damage, to me it sounds unlikely however i cannot say whats wrong definately. I think you need to either get into your GP Tues or ring your team at the hospital or the consultants secretary and make an appointment to see him and get them to explain to you exactly about your condition and you can compile a list of question/concerns for him. They can then take it from there,

Sorry if its not hugely helpful, but do get onto someone if only to settle those fears you have.

Thanks I will take a look at the link. I couldn't see the GP on Friday, so will try and see the GP on Tuesday about the vision problems.

The mask is a terrible fit, and my eyes are dried out in the inside corners from mask slippage in the night and air blowing into my eye. It is a case of too tight and still slipping and leaving marks and hurting me, or have it loose and have air flow all over the place. Even moving in my sleep has the mask slipping, so I am waking continually in the night due to the mask trying to fix it in my sleep, so I am still not getting proper sleep.

I do feel a bit better from getting more oxygen at night.

You might have the wrong mask size and you should be shown how to fit it properly yourself. See what Gp says and take it from there xx

I am quite annoyed about the mask issue, there is apparently only three sizes, the other one was worse, when the company that provide the equipment rang up, I explained the mask is a bad fit, they started telling me to use my pillow differently, basically trying to blame me for the fact they have just three sizes of mask.

I don't have a hudge face, bone structure wise, so I have the small mask, the air blows more from the middle size mask, my nose is not a long one that goes down the face to the lips it finishes further up with a large gap to my lips, it sticks out more than a regular nose, there are no allowances for different face shapes in these masks. I looked on line, the thing is you need to go to a shop and try on various masks to work out what is the best fit. I am sure there is somewhere to get a better fitting mask, I will find somewhere.

They all only do only three sizes. There is such a thing as a nasal mask but I don't know if that work for you. If you adjust the headgear properly it is possible to get a good fit but you need a professional to help/show you.

Oh yes there are nasal masks too, as I brethe through my mouth the guy said it was not suitable for me, I have to have the mouth and nose type mask. I have adjusted the head gear all different types of ways believe me, we went through it in the consultation and I have adjusted all types of ways at home. It isn't adjustment, pillows etc, the mask is a bad fit. I will sort it out with the chap when he comes around on Wednesday, and I will chat to my GP on Tuesday if I get an appointment, there has to be somewhere that sells masks you can buy yourself it the NHS only offers three types of mask.

Sorry not to get back on eyes, responded but got lost.

I don't know but eyes are precious and with them, if there is an issue time is usually important. So do get it sorted. Demand a referral to a specialist and don't forget you can express a preference.

Okay - big long post lost as MN went down AGAIN (are you listening MNHQ)?

Will rewrite later but am also a Sleep Apnoea sufferer.

I've had a CPAP machine with a full face mask for about a year and a half now and still hate it with a passion! On the plus side though I feel completely different after a full nights sleep with it on.

I've also got a humidifier attachment on the one I was supplied now as I was suffering from acute dry mouth in the mornings, sometimes to the extent that the wall of my mouth would crack and bleed, painful at best. That has to be filled with water before I turn the machine on, going for a quick cat nap therefore becomes a giant operation!

It took me months to get used to wearing it, the sensation of having air blown at you is something I'm still dealing with though and often have to take it off and calm myself down before trying again. I still go through phases of taking the mask off in my sleep as well, which is a complete pain - I'm not sure how or why I do it, but I can definitely feel it in the morning when I've not had a proper sleep.

My mask is terrible also, I've recently been given replacement seals and headbands as they're usually to blame (or so I'm told..), but what I have really doesn't work very well. Constantly leaking and finding that I have to maintain a utterly awkward position in order for there to be no leaks. The noise from a leak is terrible too and will (always.. without fail.. !) wake up my wife!

There are positives I'm sure... I just can't really think of them :(

Dh has been using his for around two months now. I'm getting a much better sleep and he seems much less grumpy.

He kept saying it was scary and uncomfortable but hsn't mentioned it for a while, so I guess he's gotten used to it.

He's out atm, so I can't ask him about it but I could ask him to talk you tomorrow about it, if you'd like?

I know he found a site somewhere that sold cushioning type pad things you put round the mask to make them a better fit and more comfortable. He never ended up getting any but they might be worth looking into for you if the uncomfort gets no better.

He also found that he got a rash around the seal of the mask, presumably from sweating in the night so he uses aquaeous cream every morning now and the rash seems to have gone.

Website is probably Hope2Sleep which sells all kinds of bits and also nasal cushions.

They also sell a gel mask which looks hugely more comfy than the NHS one but typically is not NHS available although costing very little more.

Thanks for sharing your experiences.

I think there is not a decent mask about that fits all then Liam.

I think this is why there is language like "compliant" being banded around, and why they say the things they do to you when you are given the machine, they know it is wofully inadequate, and try and put the blame on the patient.

I will just keep complaining about their equipment and asking for something better, asking the people who supply the machine hasn't worked, so I will get on to the GP and hospital, and try and find some shop you can walk into physically that sells masks somehow.

Hi Lady, I just read out some of your posts to DH, who's used a CPAP for over a decade now, and he's come up with a few gems of wisdom for me to impart! Here goes....

Do you have to breathe through your mouth? Nasal masks are less intrusive and seem to fit better. DH naturally breathes through his mouth, but uses a chinstrap to keep his mouth closed so that he can use a nasal mask.

There are 2 types of nasal mask that he's tried; one fits over the whole nose, and another which just goes into the nasal openings. The latter is much easier to fit, but not great for people who need a particularly high flow/pressure.

Have you had an appointment with an NHS CPAP technician? His has been really understanding and helpful over the years.

Also try:
Staying on your back.
Different hose positions - this makes a big difference. DH finds that straight down his chest is best.
Put a bit of Sudacreme on your skin where it leaks; he finds that this helps to make a better seal. (Surprised they don't list that on the tub, in the extensive list of ailments which Sudacreme cures!)
Much better to have the straps slightly looser, and allow the cushions to inflate onto your face.

Sorry this is so long - hope that some of it may be helpful.

Good luck - you won't regret it once you overcome the initial teething problems!

Has anyone tried one of these I have a Fisher and Paykel?

I can't buy loads of £120+ masks, I haven't that much money to waste, that is why I am not keen to get online and why I would prefer to go to a shop where you can try before you buy.

Sadly, yes I breathe through my mouth, I know that restricks choices.

I bought some sudocreme yesterday, as it is handy to have around and I saw it when waiting to pay in Boots, I will try that.

I have severe CSA, not sure about how how the pressure level is compared to others, it starts at 4 and goes up to 20, is that high?

The sleep study showed I move around a lot, on both sides and back in my sleep so, I can't force myself to stay on my back sadly.

Also in the brief meeting I had with the Dr, he said there is also an issue with my large breasts causing problems with inflation/expulsion of air in my lungs, and I can't quite remember what the problem is there, he was more concerned at the 61% of oxygen and getting me on the cpap machine for now. I suspect they will want me to have a boob reduction, as they are massive.

Thanks to you and your dh!