Newbie and pretty scared

[Kevin in NH]

Hi folks, I am glad I found your forum. It helps to read about people in a similar situation and how they dealt with the issues I am going through. Over the past 2-3 years I have noticed disrupted sleep and my wife telling me that I snored. She never noticed that I stopped breathing but I chalk that up to just not paying close attention. My insurance wouldn't approve a full sleep study but had me do the home one that was pretty crappy. I somehow slept a few hours with the alarm on the device going off several times and it falling off my head. I can't imagine the results were very accurate but they did point to some sleep disruption and apnea events (22 per hr). I also had a pretty sever deviated septum and my primary recommended I have that resolved (and I did last May) and may find some improvement but he was honest and said it wouldn't fully resolve all the issues. It did make some improvements but over the past few months I seemed to resort back to bad sleep and feeling fatigued all day long. Again, insurance won't pay for a sleep study but I was sent for a CPAP. I got my Auto resmed s9 with a Mirage FX nasal mask a little over a week ago and it has not been easy. My sleep has ranged from 4 to 6.5 hours per night. I was getting some mouth full of air and next day bloating that was bothering me so the ERP was changed at the sleep doctors office and I am trying a Hybrid mask that covers my mouth too. The ERP change and the mask seems to work a bit better but I get more leaks with the Hybrid then I did with the nasal. The one thing that has me total freaked is the data download they took from the first week. Over the first 7 nights my AHI was 7.24 but the bulk of those were clear airway events with only 2 in total obstructive events for the week. I am getting a few hypopnea's per night but I am average 25 clear airway events. This is scaring the hell out of me and I am very stressed about it which doesn't help with trying to learn to sleep with the CPAP. I do notice the bulk of these are either in the very beginning of the night, possibly before falling asleep or just before I wake up.

I appreciate everyone taking the time to read my post and any comments that are made. I am new and trying to learn quickly. I did get the software downloaded so I can see my daily activity.

[Julie]

Hi - First thing, so we all know at least the basics when we go to give you our two cents, if you click on User Ctl Panel under the logo, then on Profile, you can fill in the full names, #'s, etc. of your machine, mask and anything else you want (text vs icons pleeze) and it'll show up under all your posts. Second... relax, nothing that happens right away can't be fixed or forgotten or seen very differently in a while.. starting out is always hard and you had a kind of raggedy beginning to begin with. Your centrals (clear airways) may or may not be meaningful in the long run depending on various things, but if you do end up needing a different machine because of the centrals, you can deal with that too, together with your doctor.

What pressure(s) are you set at? If they're on the high side, it would explain the bloating and you could possibly try 1-2 notches lower for a night or two to see if it helps. Are you aware of having acid reflux (GERD)? That could also be a factor if you have it as so many of us do (we raise the head of the bed by 4-6" and it makes a big diff.).

But I think the main thing now is just getting into the routine, keeping fairly regular hours, not drinking alcohol or caffeine anywhere near bedtime... Do you take meds - they can definitely change how you sleep. And relax (again) and give things time to settle down and form some kind of pattern(s), because things can be tweaked and your body will take a little time to adjust.

[Papit]

Hi Kevin. Your early numbers don't look scarey at all (to me). You'll get plenty of help here. Those CAs will get resolved over time and with more experience. Take your time and keep posting. Learn how to use photobucket.com so you can post your graphs and be sure to fill in your equipment information so others can see what you're using.

Best of luck. Although we can't see much of your picture yet, looks to me like your doing well at this early stage.

[Kevin in NH]

Hi - First thing, so we all know at least the basics when we go to give you our two cents, if you click on User Ctl Panel under the logo, then on Profile, you can fill in the full names, #'s, etc. of your machine, mask and anything else you want (text vs icons pleeze) and it'll show up under all your posts. Second... relax, nothing that happens right away can't be fixed or forgotten or seen very differently in a while.. starting out is always hard and you had a kind of raggedy beginning to begin with. Your centrals (clear airways) may or may not be meaningful in the long run depending on various things, but if you do end up needing a different machine because of the centrals, you can deal with that too, together with your doctor.

What pressure(s) are you set at? If they're on the high side, it would explain the bloating and you could possibly try 1-2 notches lower for a night or two to see if it helps. Are you aware of having acid reflux (GERD)? That could also be a factor if you have it as so many of us do (we raise the head of the bed by 4-6" and it makes a big diff.).

But I think the main thing now is just getting into the routine, keeping fairly regular hours, not drinking alcohol or caffeine anywhere near bedtime... Do you take meds - they can definitely change how you sleep. And relax (again) and give things time to settle down and form some kind of pattern(s), because things can be tweaked and your body will take a little time to adjust.

Thanks Julie, I think I have updated my equipment properly. My pressure really never goes above 8 and I did raise the head of the bed a few inches. I just switched to the Swift FX mask and it seems to be working good for me. I am trying to post my last night graph for all to see.

[chunkyfrog]

Welcome, Kevin.
We've got your back.

[pandatx]

Welcome Kevin. I'm pretty new here too but I can tell you that the people here are so supportive and know so much. You'll be feeling better about everything in no time! xoxo

[Java Time]

Over the first 7 nights my AHI was 7.24 but the bulk of those were clear airway events

Kevin,

I've been on CPAP for 1 1/2 years and I still average around 5 AHI with slightly over half as "clear airway". 7 isn't great, but it isn't the end of the world. Keep trying different things for a week or two to see what helps you.

Some things to try:
Different sleep positions (I had to change from stomach to side)
Different pillows - not just for comfort, also to find pillows that help keep your mask in place (I ended up with a buckwheat pillow with a "Double Edge PAPillow" on top of it - https://www.cpap.com/productpage/papill ... cover.html. This helps me get my head to the correct side sleeping elevation for me and helps me arrange myself so there isn't to much pressure pushing my mask off of my nose)
Vary the humidity if you have that on your machine.
Different masks and different size nasal openings if you use nasal pillows.

These are just some ideas and everyone is different. I've tried a lot of things the past 18 months. Some things that didn't work when I was new and nervous, now work fine.

I went from 70AHI in my sleep study, to 10AHI at first on CPAP, to now averaging just below 5AHI. Some nights are much lower around 2AHI, some nights are higher around 9AHI. As my sleep doctor tells me, try not to worry so much about each individual night and trust that your CPAP machine is your safety net and will keep you safe and breathing.

The point is over time you can and will improve your therapy by trial and error and just getting used to it and relaxing.

As you relax and find what works best for you, it will get much better. I'm now very happy on CPAP and would NEVER sleep without it!

[Madalot]

Welcome, Kevin.
We've got your back.

Absolutely. There's a lot of us here that have been where you are now and we're here to help guide you through it.

[ughwhatname]

[quote="Kevin in NH\Thanks Julie, I think I have updated my equipment properly. My pressure really never goes above 8 and I did raise the head of the bed a few inches. I just switched to the Swift FX mask and it seems to be working good for me. I am trying to post my last night graph for all to see.[/quote]


I like the Swift FX also, but I don't have any trouble with mouth leaks. Have you dealt with that? You mentioned it in your first post, having gone to a full face mask due to mouth leaks and bloating.

You've come to a great place for help.

[Drowsy Dancer]

For the first six weeks of CPAP, although I started feeling better right away, my AHI, although much improved over my sleep study, was still pretty high (71 untreated, then maybe 10 for the first couple of weeks). Then all of a sudden (like, overnight) it dropped to below 5 and now it's a rare night when it's over 3, and it's usually under 2.

[Kevin in NH]

For the first six weeks of CPAP, although I started feeling better right away, my AHI, although much improved over my sleep study, was still pretty high (71 untreated, then maybe 10 for the first couple of weeks). Then all of a sudden (like, overnight) it dropped to below 5 and now it's a rare night when it's over 3, and it's usually under 2.

I really appreciate all the support. Here is my last nights results which is typical of the last 3 nights. When I switched to the Swift nasal pillows I also turned on EPR x3 that made a difference with mouth leaks. I am getting more and more confident every night and have started to feel better during the day for sure. The clear airways have always been the majority of my events but they have decreased in the past week to where they show last night. Based on last night it looks like most of the clear airway events happen almost the same time as a leak. Any thoughts?

[Papit]

Nice job, Kevin. You might want to try the image capturing instruction Pugsy put up in another thread to post a larger/fuller resolution image of your graphs: viewtopic.php?f=1&t=81072&p=737779#p737769 I like to save the image in JPEG. Hope this helps.

If needed, here are the detail Photobucket navigation steps I use to get the image's IMG Code:
After you capture the image of your graphs and open photobucket.com, click Upload, click Browse Files, find where you saved your graphs JPEG image on your PC and click on it. Then click View Library, right-click the IMG Code and click Select All, right-click the highlighted IMG Code, copy it, and paste it into your cpaptalk.com message Post after first clicking [Img] on the menu line, click Preview and then Submit. (It's actually easier done than said!)

[DEXSUZ]

Kevin:

Glad you're helping yourself by getting CPAPed and coming on here for advice. I developed my own six-step program to get over that scary feeling.

1) I found veteran CPAP users and they acted as mentors every step of the way. I knew I could ALWAYS go to them when I got frustrated or had questions. There are many good folks on here who will give you sage advice, too.

2) Before I began using my system to sleep nights I'd sit around watching TV or reading with the machine on and I'd listen to it, occasionally slipping the mask over my coconut to become familiarized, comfortable, and getting my mind right.

3) Next came early afternoon naps (an hour at most)with the mask on, all systems go, the phone off the hook, and nobody home. Successes began happening.

4) After the machine and I became fast afternoon friends, I'd have everything set at night but go to sleep without it. When I inevitably woke up at 12:30 or 1 a.m. and groggy as heck, I would then throw the mask on and fall back to sleep in an almost exhausted way before my mind could be alerted and start fretting about this contraption on my face.

5) Over two weeks or so of doing #4 I almost looked forward to when I'd wake up and put the mask on because I was getting better and better night's rests. Thus, I set a definite date for myself on which I'd go to bed WITH mask on and everything powered up.

6) Sunday night March 3-4 was my night and I made sure sleep conditions were optimum: no caffeine later in the day, no politics or close ballgames on TV, and lo and behold 24 of 27 sleeps since then have been of high quality.

It's astonishing to me how I've come so far in seven weeks. Be patient. See your CPAP gear as your friends. Keep reporting back to CPAPtalk. Sleep tight my friend!

[Kevin in NH]

For the first six weeks of CPAP, although I started feeling better right away, my AHI, although much improved over my sleep study, was still pretty high (71 untreated, then maybe 10 for the first couple of weeks). Then all of a sudden (like, overnight) it dropped to below 5 and now it's a rare night when it's over 3, and it's usually under 2.

I really appreciate all the support. Here is my last nights results which is typical of the last 3 nights. When I switched to the Swift nasal pillows I also turned on EPR x3 that made a difference with mouth leaks. I am getting more and more confident every night and have started to feel better during the day for sure. The clear airways have always been the majority of my events but they have decreased in the past week to where they show last night. Based on last night it looks like most of the clear airway events happen almost the same time as a leak. Any thoughts?

Hi again everyone, here is my data from last night. Not a bad night until all of those CAs after 4am. The CAs have been my biggest issue over the past two weeks with a few hypos but only 1 or 2 obstructive or apneas. There does seem to be a direct correlation between the CAs and my leaks. Is that common?

[Todzo]

Hi Keven in NH!
I wrote the following for another thread but I believe it has a lot of information you will find useful right now. Others here will gladly help you set up using your xPAP data to establish constant monitoring. Right now concentrate on “Job Two”.
------------------
by Todzo on Sun Mar 31, 2013 2:31 pm
I think that the education we found to be “Job One” last week should include all such things as options, setting up constant monitoring, bi-weekly feedback, mask fit, hose management...

“Job Two” is getting used to the pressure!!

Notes:

Getting familiar with the machine during the day should be “standard practice”. Some time in bed both learning to fit the mask, move around in the mask with pressure, laying calm in all the positions, moving too all positions, and learning to breath quietly. With the lights on and with your full awareness problems are likely to be sorted out much more quickly than seeing leaks in the data and trying to figure out why.

Then time reading a book, watching non-violent TV, listening to music or the radio, or browsing the Internet. With the involvement of the full resources of consciousness the development of the necessary new “breathing with the machine” reflexes are likely to be much more quickly made.

Reflexes do not come quickly. So lets plan on doing this for an hour a day for a month.

Then some special time learning to breath with the machine with special emphasis on breathing volume and gentle breathing.

At rest (awake in a chair apparently) we average about six liters per minute of air. At twelve breaths per minute that is using about two cups of air per breath while breathing once every five seconds. I would suppose you should use a bit less resting in bed. But the machine makes it very easy to breath in more air. This tends to upset the amount of air we need to exhale and we need to breath all this extra air out against pressure. So a little war begins with each breath of all that extra air too easy in and not so much fun getting out – frustrating – and so our breathing rate tends to increase as well. If you added only 6.4 ounces of air per breath and breathed each breath in 3.6 seconds (16.8 BPM) instead of processing six liters of air per minute you would be processing almost twelve liters of air per minute. It is easy to breath too much air while using an xPAP machine!

The changes in blood chemistry which happen if you do breath too much air tend to hyper stimulate some of the breathing control sensors. When the “frustration” signal is added to this breathing tends to take off (become unstable). The urge to breath actually increases. If events occur the added activation of the central nervous system is added to all of this as well – each time – so this all tends to ratchet up as the night proceeds. I really do believe that this is why we hear so many telling about how they rip the mask off at night and then have a lot of trouble getting back to the mask. They started a little war against the pressure and ended up getting stomped.

In my case this is all exacerbated by Post Traumatic Stress (PTS) from severe trauma in years past. During the time of year near the anniversary of the event I find myself needing to use enhanced expiratory rebreathing space (EERS)[1]. We may well see better therapies for this in the future[2].

For what ever reasons during the first few minutes with the mask I tend to find it hard to get my breathing to volumes appropriate for being at rest in my bed. I have found it helpful to count while thinking about breathing small breaths. Breath in for two counts – then – out for three counts – then pause for one count – – then do it again slower and with a bit less volume. I know I am doing it right when my feet become warm (likely due to the increased circulation) and it becomes very easy to breath. gently. Perhaps a set of techniques should be developed to help people learn to go to bed with their machines.

I believe that stress reduction is likely to help a lot with xPAP therapy.

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721