Newbie needing help, No win situation

[LeeNotts]

Hi All,

I'm new to the forum and new to sleep apnea. I'm looking for some help, advice anything really because I'm going out of my mind, Not sure how much longer i can continue to function (or not function as appears to be case) with not sleeping/quality of sleep.

here's my story -
last February after months of falling to sleep after meals (even after eating as little as half a sandwich) I went to see my GP. Being a large guy (although I'm now 5 stone lighter with much more to lose) I was expecting to be told I was diabetic. My GP did a full MOT and found two small tumors at the back of my throat. He instantly referred me to the hospital and two weeks later I had my first appointment at the hospital.

over the next two months I had 4 other hospital appointments all relating to the tumors (which they couldn't tell me exactly what they are) each time giving them my full history and telling them why I went to see my GP in the first place (falling asleep after meals). to cut a long story short I was due to have my operation last May. The day of the Op cam and I was all set to go (including wearing the ever so attractive backless gown) only to be told I wouldn't be having the operation because the consultant (who I had seen on 3 of my 4 visits) decided I might have Sleep Apnea and therefore was at a high risk of complications. three months later his suspicion was confirmed.

Since August I've been using the Cpap machine they gave me (resmed s8 Escape II) with a couple of different masks and i hate it! my sleep is awful.

The Quattro FX mask makes me feel claustrophobic and encased but i do manage to drift off to sleep, only for to woken up with leaks, a really dry mouth and dripping in sweat. I maybe average an hour a night at best with this mask.

The other mask is so comfortable (by comparison to Quattro) Swift FX, but im only managing 30 minutes to 45 minutes with this mask before I wake up with a really painful nose and dripping in sweat. Rainout (i think that's what you call it) is also a big problem and very uncomfortable maybe this is causing the painful nose?.

I've been back and forth to the Sleep Clinic and there is nothing more they can do, i just have to get used to it. and until my sleep apnea is under control they won't operate!

I've been trying so hard to sleep for longer with the masks, but just can't sleep, last night i had the mask on for nearly 4 hours and slept for maybe 30 minutes. I'm so tired, drained, forgetful, irritable and generally becoming not a nice person to be around.

So now basically im left with two choices. either sleep without a cpap and be tired, forgetful, sleepy and grouchy during the day, or try and continue to sleep with the masks, and be tired, forgetful, sleepy and a damn right grumpy **** (insert 4 letter word here, the ones starting with C, D, F,T are all appropriate ) during the day, and twice as bad during the night whilst trying to sleep (very frustrating i could actually cry some nights)

Help please, any words of advice, Hints , tips, advice on different masks etc would be really appreciated

[Sleep2Snore]

Hi LeeNotts,
You do have some problems there!
I take it you breath through your mouth before you have a full faced mask?
Masks in general take a bit of getting used to, some like me just accept we have to put a mask on to go to bed and get on with it, however, that being said I did try a lot of them before I got one that I could get on with.
I settled on Nasal Pillows rather than a mask, but I can't get the ones I like now If you need a Full Faced mask then Nasal Pillows would not be an option for you anyway.
Getting used to the machine takes a while and some have gone about this in many ways.
Sitting with the mask on without the pipe attached.
Sitting while watching TV as above.
Sitting as above with machine attached and running.
Try the slow start while sitting and if it does not suit you try quick starting, but this does not work for everyone.
Try lying on the bed, with no intentions of sleeping, just lay in bed with the mask with no machine or pipe.
As above but with machine running.
If you have a APAP machine, ask to try a CPAP or vice versa.
Most of all, do not pull the straps of the mask to tight, a bit of experimentation is required. There are a lot of masks out there, not all hospitals keep a large stock so you may be limited. Ask to see what they can offer.
It is not easy or natural to be attached to a machine when trying to sleep, you are not alone in having problems and it does take a bit of getting used to.
I used to breath through my mouth during the night (sometimes still do but not often) I had to teach myself not to do that, which was not easy. I could not handle a full faced mask so had no option but stick with what I could use.

Set the humidifier to mid setting and adjust for best to suit you, to dry turn it up and if to humid turn it down. If you get condensation in the mask or pipe, heat the room slightly or turn it down. You can get a heated cover to prevent this, but you would need to buy it yourself.

Stick with it, it is well worth the effort.
If and when you do go for an opp' remember to tell them you have O.S.A.
Also make the recovery nurses aware of it as well.

I know it is not easy and so do most here.
Hopefully they will be along to give you some advice.
Some sleep clinics are better with advice than others, a lot can be learned by meeting others if they have yearly meets like some do. If they have go along.

Any questions, just ask, someone may have advice to offer.

[Sparticus]

.....and Relax

First of all Hi Lee and welcome to the forum

There are lots of ways that people react to having OSA. Some get excited some scared. some worry like hell and some take it in their stride, basically were are different. For me I was quite excited at first all this machine stuff, masks etc and on the first few nights spent playing in my mask at darth and holding my breath to see how high the preasure would go but this didnt last long. It turned into a real bore lying there listning to my machine wurr and hiss for many hours couldnt relax. Sounds like to me that you too need to relax more. My advise is 2 fold. 1. get yourself a fan either desk or a stand. This will do 2 things for you, it will ease the sound of your machine as the frequency is about the same and also keep you cool during the night (Mines never off no-matter how cold it gets) Second gets some tunes on the go when you settle down for the night and Im not talking motorhead here Im talking ambient (Waves, wind, rain etc) maybe a little panpipes anything thats soothing and relaxing and takes your mind off the machine.

For me it worked a bloody treat and has work for others aswell, I also use joss sticks or smelly candels as well but make sure you put them out before sleeping. other methods are scuba diving (Whale music needed for this) and pretend your down there with your scuba gear on listning to the waves etc. It really does help some people to switch off, give it a whirl and see if it helps.

Spart

[ElleCee]

Hi Lee,
If you are comfortable with the Swift FX then check out the size of the nasal cushions, I found out recently that I was using the wrong size and that doesn't help at all. There are three sizes: Small., Medium and Large.

Next point is: I presume you have a dehumidifier if you are getting rainout. If that is the case the quickest and simplest way to get round that is to make sure the machine is a fair bit lower than your head. Try putting it on a footstool by your bed rather than on the bedside cabinet, that way any excess water will run back into the machine rather than up your nose.

Wear the mask for a while before sleeping, have it disconnected for a bit and read or do a crossword ot something. that means you are getting into comfy mask mode without the worry of the machine keeping you awake.

As Sparticus says, music is a great help. I don't do that myself, I listen to the radio using a pillow speaker (google them if you want to fond our more) and I tune into talk radio. Means I can listen to it without my husband being disturbed. I also have a ceiling fan which I use all night every night, great for snuggling down under the duvet to get warm and then when I get hot I can throw the duvet off and I cool down quickly.

I also have a glass of water in a beaker with a lid (a kids one) that I can take a sip from without having to sit up, that helps the dry mouth without me having to go to the lengths of getting up etc.

The only other thing I can say is that it takes time to get used to, you will get there, once you are there you won't look back at all.

All the best
Lorraine

[LeeNotts]

Thanks for the replies guys, Had a terrible nights sleep yet again last night. today hasn't been the greatest of days either, I had a bit of blow out and shouted and swore at no one in particular then kicked one of the kitchen cabinets and stubbed my toe in the process (serves me right i guess). But tonight is going to be different! I will have a decent nights sleep.

@Sleep2Snore - thanks for the reply, im sitting with the mask on as i type! hopefully i will get used to it.

@Spartacus thanks for the suggestion of the relaxation cds, Never tried one before but am going to give it ago tonight as my i've borrowed my neighbors Paul Mckenna CD's will give it a whirl tonight.

Thanks Lorraine, the mask has an S on it so I'm assuming it's a small although the S isn't on the Nasal Cushion part but the headgear so maybe not ? but i will certainly check that out.

I don't have a dehumidifier do you think one would help? I'll call the clinic on monday and see what they say about getting one, if not im happy to buy one myself if it will help.

I've put the machine on large book on a foot stool tonight see if that makes any difference in regards to the height. it was quite a bit higher than my head (i have a bed that's quite low to the ground) have ordered one of those bedside hose holders, should arrive next week so will see how it goes.
Thanks again guys i really appreciate it. its good to know there are others and they understand.

[symmit]

The humidifier will help, as would a heated hose (this allows you to turn the humidity right up without getting rain out and have nice warm air)

You may benefit from an Auto-CPAP machine that runs at a lower pressure except when needed, those of us that are privately diagnosed tend to use them and I found it easy to get used to as the pressure was increased gradually to what was needed instead of being full on from night one.

[Barely Awake]

Not sure it will help anyone else but for me remembering uppermost that no matter how little sleep I was getting trying to get used to CPAP and no matter how many times I woke up and became itrritated by the mask - on cpap I was getting much more actual sleep and I was being woken far less times than before I had the machine.
What kept me going was knowing it was possible to get used to it.

[LeeNotts]

Thanks again for the reply's guys.

Been to the clinic today (excellent timing as i only called on Monday) i had a lovely nurse who straight away told me what problems i was having with the mask and pin pointed them before i even told him! he instantly said he would have never have advised the Quattro FX as the bridge of my nose is too small for it to create a decent seal and hold it in place, hence why the seal was pulling away from the mask (not my face) and blowing in my eyes.

the Swift FX, was indeed the wrong size. nose is quite painful at the minute so im avoiding that style mask.

he said they only give out humidifiers as a last resort and that it doesnt help with the drying out of your mouth (which contradicts what i have read and what i've heard from others on here so just think the NHS is being tight)

but i do have a new mask, it doesnt look much by comparison to some of the others, its a full face mask its the Apex Wizzard 220. its actually very very comfortable and not as wide as the resmed full face mask so seems much more comfortable for side sleepers.

Im so looking forward to my bed tonight, this is going to work! and if it doesnt back to the drawing board and i will try again. feeling much more positive. i've been looking at the sleepweaer may take the plunge and buy one in a few days

[dot9000]

Newbie to Newbie

I also had sore nose at one point. It turned out to be the pillows were too tight. Have a positive attitude going in, (it helps in all aspects of life)! I knew that when I got used to it, it would help me immensely! I thought of the hum of the machine as a wonderful reminder that I am being taken care of. The twisty tube is a tube of life, it feeds me during the nights so I can make it through my days. The headgear is hanging onto me, keeping me safe. I know it may sound kooky, but it really helps. Even if you don't believe it yourself, keep saying positive things and it will turn around for you! I swear, it works!

[Grumpy]

sleepweaver

The sleepweaver won't be any use to you if you need a full face mask.

[symmit]

The sleepweaver won't be any use to you if you need a full face mask.

Many people try a nasal mask and find they get used to it, as part of there congestion or mouth breathing is because they have difficulty with nasal breathing that is alleviated with the cpap pressure. When I have congestion I will go to bed with a full face mask but wake up breathing through my nose.

I firmly believe its worth a try especially if you can get one for free!

[ElleCee]

Sometimes just knowing you have to breathe through your nose makes you do it. Try breathing through your mouth with a nasal mask on and you don't do it for long

I used a chin strap when I first used a nasal mask but after one night I gave it up as not needed.

Lorraine

[LeeNotts]

The sleepweaver won't be any use to you if you need a full face mask.

Wasn't so much i had to have a full face mask due to mouth breathing but the Swift FX was the incorrect size which caused the pain and discomfort. I am now able to use the SwiftFx mask and im averaging about 4 and half hours with it, which is amazing!

so a little update since i last posted, i'm getting along much much better with the Cpap. first few nights using the Wizard mask was a little weird and i woke up quite a few times to adjust for leaks etc, but I've found my way with it now. One night last week i actually slept for nearly 7 hours! I honestly can not for the life of me remember when i last slept for 7 hours. woke up the next morning with huge marks on the back of my head/upper neck though where the straps had dug in, but all sorted now though.

thanks everyone for the help, this place has been great.

[symmit]

I honestly can not for the life of me remember when i last slept for 7 hours. woke up the next morning with huge marks on the back of my head/upper neck though where the straps had dug in, but all sorted now though.

thanks everyone for the help, this place has been great.

Congratulations! It's great to hear someone getting real benefit from treatment, the big question is how are you feeling now in general? The first long nights sleep is always great, I remember the buzz of having a day of energy (I also remember clearly beginning to have dreams again too!)

[LeeNotts]

Congratulations! It's great to hear someone getting real benefit from treatment, the big question is how are you feeling now in general?

Thanks Symmit, To be honest it was quite an odd feeling, I guess I've been functioning for so long on so little bad quality sleep, feeling knackered for me was the norm. so it was a little strange at first.

I now have more energy, due to more energy i'm now able to hit the gym more and no longer looking for that "energy boost" snack mid morning which has helped with my continued weight loss. I'm no where near as grumpy or bad tempered and best of all and this may sound odd but I no longer loose my train of thought! or at least as often as i used to