Just wanted to introduce myself to you all. My name is Roz and I am right at the beginning of this Sleep Apnooea journey!!
I only discovered I had a problem when I went to Brisbane to visit my daughter this April. We slept (well if you can call it that!) in the same room in her little flat. Pour soul had to keep moving onto the couch because of my snoring (well I've known I snore for ages - no surprises there). However, one morning she said I kept stopping breathing during my sleep. This rang a bell and I remembered someone talking about Sleep Apnoea. I looked it up and realsied that I had all of the symptoms. I thought I was tried out because I had been putting in stupid hours towards a new business. I had put on a few pounds (not too many) because I had changed from a walk about job to a computer based one, I put the depression down to genetics and previous history etc etc.
When I got home I requested a sleep study (moderate apnoeas 45 per) I am several days into my CPAP trial. Oh my it is so much worse than I had imagined. Like so many newbies I thought I was going to get a bit of relief the first night...hmmm. I was nearly hysterical by 4am, bloating, pains, nausia, itches, drafts, noise, pannic blah, blah, and not a lot of sleep!! Over the next couple of nights I tried taping my mouth, sleeping up and down sideways etc etc. I switched the machine on and off on and off, cried - You know the score.
Anyway, I have been reading the posts on the site for 2 days now and I know so much more that I did. Today I got the specialist to change my mask to a full face mask (I did tell her when I started, and she gave me a nose mask, that I was a mouth breather and she said "oh that's just a bad habit" Well it's one I have had since I was little and I don't see how I can relearn it in my sleep). I am hopeful that tonight might see a little improvement. I will also take the proffered advice and put my machine on earlier in the evening and practice. Anyway, I am armed with a lot more information than I was. There's no doubt that being informed about options is a useful tool.
I know I may have a lot more struggling to go before I get the right system but thanks to a lot of the posts on here I now know it's worth persevering.
You guys have given me a bit of hope - yay and I will not put a mallet through the machine tonight - I'll be good and do it the one day at a time method!
Thanks for the collective wisdom
Roz
Mon Jul 21, 2008 10:25 pm
Mrs Rip Van Winkle
Joined: 08 Jun 2006
Posts: 2285
Location: Nature Coast, Florida
Thank You Roz for posting...and a great post at that! Welcome to the Hoseheadian Society...you soon will be on here helping others...sharing your ideas or just telling your story...which helps others. This site is addicting! You get to know everyone...become concerned, think about them during the day...a cyper family!
Hello Roz, glad you stopped by. Sorry to hear you are having such problems but the key is to get the right fit that works for you. When I was first on CPAP I had a horrible time and gave up after two weeks. Then I changed jobs and didn't have insurance for a few months so I had to give it back. Now that I have a new machine and a nasal pillow instead of a mask it is much easier for me to sleep with. I don't know for sure if I mouth breath but I have a consultation to get another sleep study done in a couple months so we will find out then. I should be a pro with the CPAP by then.
Just like Mrs Rip Van Winkle said just telling your story helps others. It's nice to know your not alone and I have gotten lots of good advice on here already and I am pretty new.
Two very common things I see every time I come to this web site are people that are pushed into nasal masks that are not right for them and anxiety issues. They tried also telling me I could be retrained to breathe through my nose. Retrained? How stupid is that??!!! Problem is when I lie down my nose gets stuffy. I have been a mouth breather since I was a little kid. Finally they gave in because I started to go off on them...and gave me a full face Quattro mask. It's working out great.
Perhaps you could try an over the counter sleep aid. I use Melatonin in a very small dose (600 micrograms) and it really helps me sleep. Many people like Tylenol PM as well. I sleep like a log.
The most important thing is don't give up on CPAP just because of a few bad nights. You can get the equipment straightened out, and the anxiety issues can be dealt with. It is too critical to your long term health!
How did your sleep go with the full face mask? Hope things were a little better for you. And if it wasn't perfect, don't give up.
You mentioned moderate sleep apnea with 45 per. I'm assuming you meant 45 per hour which is the apnea/hypopnea index. The scale varies a little from place to place, but everywhere I've seen 45 per hour is in the severe category. It really doesn't matter all that much -- sleep apnea is sleep apnea whether it's mild, moderate or severe. Plus severity is more than a function of AHI. But for you, it's pretty bad. So I'm real glad you've started cpap.
And if the full face mask doesn't seem quite right, go back to where you got it. There are different brands of full face masks. There's even a style that covers the mouth but uses nasal pillows. Hopefully this one you got works fine, but if not, another one might work better.
I scoff everytime I hear some tech or doctor say that mouth breathing is just a bad habit you can overcome. It's true that for a very few people, usually with high cpap pressures, might stop mouth breathing while using cpap, because the force of the cpap pressure will keep the lips shut. But for most everyone who mouth breathes, it is how it is. It's not a "habit" one can break. There might even be nasal reasons for it. Everyone is a little different. Those who say it's just a habit you can overcome have no common sense.
I check in here every now and then. it really helped me in my worst time. I have only been on bipap with a full face mask since late april but it is already old hat to me. Stick with it, the benfits are so worth it. these days once I get a good seal for the night I can't even stay awake very long for anything to bother me.
Hi again,
Joy, joy, joy.....:)
I am feeling 2000% better today. I actually got some real peace last night with my new face mask.
It wasn't perfect yet but Oh, sooooooo much better!! I'm pretty sure I managed about 5 hours of reasonably undisturberd sleep.
I took the mask off at about 4.30am because it was slipping around and feeling like a skyscraper on my face.
I feel so good because I know that the FF mask is the way to go and I still have nearly 5 weeks of trialling left and that means
I can try a variety of masks to find a good fit.
Last night I went to bed feeling so much happier because of the people here who had written to support me.
Then I woke up this morning (almost refreshed :) !!) and there were two more replies.
Everything is so much easier to bear when you know that you are not the only one and there are people out there who REALLY understand.
I don't know anyone who has sleep apnea and it seems to be one of those afflictions that other people think is either silly,
even funny (it's just snoring, what's the problem? )
Thank you guys, I really appreciate the time you took to write to me. I am such a mess just now this is making me cry again.
Anyway, Here's to sleep, energy and sanity returning.
xxxx
Roz
Hi Shrew-You have a great attitude about all this. I have had my challeges, many of which I am still working through. I am glad you had a great night sleep last night. Your story reminds me of my father-He came to visit me a couple years back, and I saw him stop breathing in his sleep, coloring got kind of dusky. I have tried to tell him to see his doctor, but he is so stubborn! I am glad you listened to your daughter. Keep posting here-we all care about and understand one another. Lantern4life
Welcome Roz!
Glad you were able to do better with the new mask. Good luck in the future. It really does make a difference when you use the machine with the right mask. My husband was just recently diagnosed and has had 4 great nights on his machine! I came here to get support and information when we first found out and i've never left ha! everybody is great and are a wonderful support to all. There are also others who work in the industry and are wealths of information!
I got lucky and went straight to a full face mask after discussing my options with my doctor and that I have a lot of sinus trouble. He suggested the full face mask for me because of being able to breath through my mouth when I get clogged up. Otherwise I probably would have gone for the nose pillow instead thinking I would fill less claustophobic. So far the FF has worked extremely well for me. My only problem is when I get an ichy nose. I HATE that.
I have heard that there is a cream that helps with the ichy nose but I'm not sure what it's called.
I think itchy nose is maybe a psychological thing...don't you?
Have you ever noticed that the very minute you can't scratch your nose it gets itchy?
Like.... hands in the washing up, suds up to the elbows??? - covered in gardening dirt? - painting, covered in oil and turps?? - applying hair colour??
- face with a mask on it ??
Every time a coconut!! woops there goes that itch!!!! lol
I used to meditate a lot and, let me tell you.... that's just putting the welcome mat out for 'itches'. Trying to be calm, serene and empty - "over here boys, party time!" Someone told me that you can tell yourself 2 things at the same time -
1. "you can scratch that if you want " and
2. "you can't scratch that now"
and the mind gets confused and forgets about it. I tried that and a number of other meditational techniques last night and I think they helped.
They did not help a lot while I was hysterically writhing around in the middle of the night doing battle with the 'mask demons' in fact it didn't even occur to me to try.
I think I had wound myself up way past rational thought in the early nights. With this mask working better I am able to think of things that will aid sleep instead of fighting it.
Ah well anythings worth a try!
_________________ It came to pass - not to stay!
Tue Jul 22, 2008 6:08 pm
Mrs Rip Van Winkle
Joined: 08 Jun 2006
Posts: 2285
Location: Nature Coast, Florida
Congrats on a better night...and we love you too!!!
I have a nasal mask...and prior to cutting my hair...I would get a hair on/in the pillow and every breath in I could feel it going in and out of my nose...drove me nuts!!!
I'm a newbie, too! I posted under "success stories' - and gave a lot of background there. I'll just do a quick recap. Had a sleep study about 8 or 9 years ago and it was normal, so I was told. Didn't think anything of it. Then, about 4 years ago, started having problems with aspirant pneumonias (I have COPD and GERD, am on O2 24/7). An EGD started me on this dubious journey. I had 8 bouts in 8 months, 2004/2005; then 9 more bouts in 2007/2008 (just got home from my 5th one in 2008 a couple weeks ago). We were desparate to figure out why I'm getting these pneumonias, why the gaps. I've been vaccinated, and yes, it would seem out of almost 20 pneumonias, one would have been covered by the vaccine, unless they were ALL aspirant. Then, I began to think...what could cause aspiration at night? I already knew that I would wake up choking - sometimes just coughing, sometimes coughing and choking to the point were I almost got sick and then ended up with major burning feeling in my lungs (I knew that I had aspirated some stuff). I figured that with sleep apnea, I was probably waking up gasping, even if briefly. Stuff would still be introduced into my lungs - hence the pneumonias. I did a sleep study, which I failed - I even failed CPAP! So...we're doing bipap. I was put on bipap during last hospital stay and doc asked "did you have any reflux last night?" I said "do you really THINK that it'll happen IN the hospital??? G<>" I've now been on bipap for a week or so, and my daughter says I sleep quieter (not as restless) and faster - I've discovered that I fall asleep without sleeping pills - something that I had asked for a few months back due to the fact that I'd wake up multiple times during the night (and I'd KNOW I'd wake up!). I've cut back on eathing near bedtime, but still have to have a snack (diabetic) so I try to eat something high in carbs to cut back on bulk; I have a hospital bed, so my head is up. I've done almost everything short of sleeping standing up! I even cut back on pain meds...I was on equiv. of 600-700 mg. morphine/day; but had the medtronic pain pump inserted, and now have 8 mg/day over 24 hour period in spine (less systemic effects), so that potential is moot.
The longer I go without pneumonia, the more I'm figuring the bipap is working. The proof, as they say, is in the pudding. I was gold that I also have some central component to my apnea. What started the pneumonia, what's continuing it, why the major gaps (8 from 2/04-4/05, then none until 12/05, then none until 4/07, then none until 9/07, then 7 between 9/07 and 7/08. What started 'em, what stops 'em, if my eating habits or sleeping habits have NOT been changed, why skip all those months (hey, I'm not arguing! I'm just mumbling to myself). It's a true mystery - maybe one worthy of "medical Mystery (or whatever discovery health calls it)....no? At least one worthy of Sherlock! <G>
I am new too and posted elsewhere about my first night last night.
One thing that was amazing was when I woke up at one point, I felt energized. I was still sleepy and that was fine, it was still early, but I had energy! I had really forgotten what that felt like. It was awesome. I was also hungry. Apnea messes with the hormone that tells us when we are full and so I have tended to just munch a lot. I actually felt hungry for a change. It was amazing to me. And just now, even a full day later, I had the energy to make myself a healthy snack before bed instead of grabbing whatever was easiest and closest. Energy. Wow. What a concept!
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