Diary of a new hoser

[littlebaddow]

When I was first diagnosed, I found this forum invaluable and it helped me a great deal to learn from the experiences and support of others. Without the advice so freely given I'm sure I would have found it even harder to cope. Thanks to you all.

I kept a diary for the first few weeks and glanced back at it today. I'm now in week 10 and really beginning to feel the benefit, so the fear, uncertainty and discomfort of the first few weeks is becoming a more distant memory every day.

I thought it might give others some hope & encouragement if they could see a few extracts from my diary. The story shows that for me this wasn't easy at first, there were setbacks, but it has been worth it. I hope it helps someone to read it.

Day 1 What a horrible experience. Lay awake for hours, got about 2 hours of very disturbed sleep then took mask off. Very uncomfortable.

Day 3 Couldn’t stand the mask, took it off after 10 minutes. Bunged up nose, felt like I was suffocating.

Day 5 Managed about 5 hours sleep with mask on, still very disturbed.

Day 6 Lay awake for about 2.5 hours before taking off mask, unable to sleep, felt like it was a constant struggle to breathe through the nose, though when took off mask could breathe no problem.

Day 8 Did not use. Took off mask after a few minutes, nose bunged up as soon as lay down.

Day 9 During the day, used mask for an hour whilst sleeping in arm chair, not too bad, woke up a couple of times with sudden exhalation though mouth.
Night time, propped up on pillows to go to sleep in semi-sitting position. Slightly disturbed sleep for about 2.5 hours, then removed mask for rest of night. Mainly the noise keeping me awake.

Day 11 Just over 7.5 hours using mask. Sleep still a bit disturbed, especially early part of the night when still noticing the puffy cheek effect. Managed to lie down flat for part of the night. Had headache when I woke up during the night.

Day 12 Got the new mask today (Virage vista). 7 hours before removing mask, still disturbed, though mask noticeably quieter. Puffy cheek effect not noticed yet with new mask. Much easier to lay down flat. Headache when woke up during the night.

Day 14 Got to sleep OK, still disturbed sleep. Woke up after about 4 hours, took a long time to get back to sleep, woke up after a couple of hours with partially blocked nose, removed mask then slept another couple of hours. No headache, noticed a bit of air leakage from mask and from mouth.

Day 17 Reasonable, slightly disturbed sleep, 6.5 hours until alarm went off!

Day 19 7.5 hours, slightly disturbed sleep. Sore nose!

Day 21 6 hours with mask, only slightly disturbed.

Day 26 6.5 hours with mask then woke up & took it off, slept 2 more hours.

Day 29 8 hours, woke up 2 or 3 times

Day 31 Ouch, only 2.5 hours, then woke up with stuffy nose & coughing. Managed another hour then took mask off. Was a cold night and had heating on – perhaps too dry?

Day 32 New machine arrived today, autopap with heated humidifier. Wow, what a difference, 8 hours straight, no stuffiness.

I won't bore you with any more. I'm now in week 10 & still have setbacks & a disturbed night, but usually manage 6 or 7 hours undisturbed sleep.

[chrisp]

Thats great littlebaddow, Should show others there is life after cpap. Glad all is working well.

Since you are in Uk I should bring you into the "Order of the hose" Sir littlebaddow.

Cheers,

Chris

[Liam1965]

One quick question (by the way, thanks for the post, it does give me hope, seeing as I'm well under 30 days and having basically the experiences you had on the days I'm on):

What was your first machine? You said "What a difference" with the Auto-Pap with H/H. Was the difference the H/H or the auto? I've got the H/H (and you may see from other threads, don't like it much), but if there's something to be said for Autopap, I'd like to know.

Thanks,

Liam, who never says anything bad about his setup, that would be a (c)PAP smear.

[wading thru the muck!]

Liam,

Quick lesson on auto-pap 101.

1. get one!
2. really!
3. cause their better!
4. really!

The thing with an auto-pap is that what makes cpap hard to adjust to is the pressure. Low pressure... easy, high pressure... hard. When you get a sleep study they figuire out what pressure you need to open your airway when it gets obstructed and that's they pressure the set the cpap at. Kind of like if you set the heat in your house to keep it warm on the coldest day of the year. In the middle of summer you are going to be pretty damn uncomfortable. Now lets say you live in Mexico. It may get down to 10 degrees once or twice a year but the rest of the time it's 90 degrees +. Do you still want that heat set all year long for the couple 10 degree days?

Do you get it? If you "live in Mexico" you should get an auto-pap.

wader, who sums up his arguements with vague metaphors that may require explaination.

[gailzee]

THANK YOU THANK YOU THANK YOU................

I'VE TAKEN THE LIBERT OF PRINTING OUT YOUR JOURNAL, AND I WILL KEEP IT BY MY NIGHT STAND, SO WHEN I GET STRESSED OUT (night 6 only for me tonight) I WILL READ IT FAITHFULLY! MAY THERE BE LIGHT AT THE END OF THE TUNNEL, OR IN THIS CASE THESE BEASTLY HOSES AND MASKS.............

THANK YOU!!

When I was first diagnosed, I found this forum invaluable and it helped me a great deal to learn from the experiences and support of others. Without the advice so freely given I'm sure I would have found it even harder to cope. Thanks to you all.

I kept a diary for the first few weeks and glanced back at it today. I'm now in week 10 and really beginning to feel the benefit, so the fear, uncertainty and discomfort of the first few weeks is becoming a more distant memory every day.

I thought it might give others some hope & encouragement if they could see a few extracts from my diary. The story shows that for me this wasn't easy at first, there were setbacks, but it has been worth it. I hope it helps someone to read it.

Day 1 What a horrible experience. Lay awake for hours, got about 2 hours of very disturbed sleep then took mask off. Very uncomfortable.

Day 3 Couldn’t stand the mask, took it off after 10 minutes. Bunged up nose, felt like I was suffocating.

Day 5 Managed about 5 hours sleep with mask on, still very disturbed.

Day 6 Lay awake for about 2.5 hours before taking off mask, unable to sleep, felt like it was a constant struggle to breathe through the nose, though when took off mask could breathe no problem.

Day 8 Did not use. Took off mask after a few minutes, nose bunged up as soon as lay down.

Day 9 During the day, used mask for an hour whilst sleeping in arm chair, not too bad, woke up a couple of times with sudden exhalation though mouth.
Night time, propped up on pillows to go to sleep in semi-sitting position. Slightly disturbed sleep for about 2.5 hours, then removed mask for rest of night. Mainly the noise keeping me awake.

Day 11 Just over 7.5 hours using mask. Sleep still a bit disturbed, especially early part of the night when still noticing the puffy cheek effect. Managed to lie down flat for part of the night. Had headache when I woke up during the night.

Day 12 Got the new mask today (Virage vista). 7 hours before removing mask, still disturbed, though mask noticeably quieter. Puffy cheek effect not noticed yet with new mask. Much easier to lay down flat. Headache when woke up during the night.

Day 14 Got to sleep OK, still disturbed sleep. Woke up after about 4 hours, took a long time to get back to sleep, woke up after a couple of hours with partially blocked nose, removed mask then slept another couple of hours. No headache, noticed a bit of air leakage from mask and from mouth.

Day 17 Reasonable, slightly disturbed sleep, 6.5 hours until alarm went off!

Day 19 7.5 hours, slightly disturbed sleep. Sore nose!

Day 21 6 hours with mask, only slightly disturbed.

Day 26 6.5 hours with mask then woke up & took it off, slept 2 more hours.

Day 29 8 hours, woke up 2 or 3 times

Day 31 Ouch, only 2.5 hours, then woke up with stuffy nose & coughing. Managed another hour then took mask off. Was a cold night and had heating on – perhaps too dry?

Day 32 New machine arrived today, autopap with heated humidifier. Wow, what a difference, 8 hours straight, no stuffiness.

I won't bore you with any more. I'm now in week 10 & still have setbacks & a disturbed night, but usually manage 6 or 7 hours undisturbed sleep.

[Liam1965]

Thanks, Wader. My pressure is only 9, so that hasn't been much of an issue for me, so apparently I don't live in Mexico. I guess the idea is that it sort of does the sleep study for you, and if you're congested or having a harder time breathing, it pushes harder, and if you're having an easy-breathing day, it pushes less?

Hmmmm. Well, the problem I'm having isn't the pressure. I've not even used the RAMP feature on my CPAP, because the pressure isn't what's getting me. It's the discomfort of the mask. I'd have just about as much trouble sleeping with the mask on with the machine OFF (forgetting for the moment that I'd do so much rebreathing at that point, I'd probably smother and die).

But still, it's good to know. Thanks!

wader, who sums up his arguements with vague metaphors that may require explaination.

Liam, who wonders if he should sue for copyright infringement.

[wading thru the muck!]

Hey Chris,

littlebaddow should be bestowed with the "Order of the Automatic Hose"

The elite club of those of us who have persevered and finally got the right machine.

[chrisp]

Giving a straight pressure cpap to a newbie should be against the law! Why do they do it ? Because its cheaper for the insurance company. The docs dont (or wont) understand it. New patients dont know any better. It might put some sleep centers out of business.

But think how boring this board would be if everyone received an Auto straight away. ZZzzzzzzzzzzzZZZzzzzzzzzzzzzzzzz

Thanks for the correction Wader. "Order of the Automatic Hose"

Cheers

Chris

[littlebaddow]

One quick question ..
What was your first machine? You said "What a difference" with the Auto-Pap with H/H. Was the difference the H/H or the auto? I've got the H/H (and you may see from other threads, don't like it much), but if there's something to be said for Autopap, I'd like to know.

Hi Liam, sorry for the delay, but you lot over there seem to sleep at different times to me

First machine was a loaner, forget the make but it was fixed pressure (set at 10cm) and no humidifier. After much research, mainly in this forum, I decided to go for the best of breed, so got a Remstar auto with heated humidifier and auto-flex, currently set at the widest range (4cm to 20cm). The difference is incredible. Much more comfortable going to sleep and always wake up in the morning without dryness or stuffiness. I've got the h/h set at level 2 (out of 5) and find that works for me, airflow is not too warm or wet. On cold nights, when the heating stays on, I do get a little condensation in the mask, but it's only the odd drip or two and doesn't worry me too much. I guess climate as well as personal preferences are factors. Could you borrow a machine to try it out?

[littlebaddow]

Chrisp and wading, thank you for the honour, I'll wear the badge with pride! Perhaps I'll get the tee shirt too

Gailzee, I really hope it helps. Even if it takes you longer, there is so much evidence in this forum that for most people who persevere, it will be worth it.

[wading thru the muck!]

Liam,

You're a tough nut to crack... I like that.

You say you don't have an issue with pressure, but you do with mask comfort. I'll tell you that the mask comfort issue is because of the pressure issue. The higher the pressure, the tighter the mask needs to be. The tighter the mask, the less comfortable it is. Intertwined in all this is the irritant of air leaking around the mask and into your eyes etc... These are some of the most common problems with getting used to using "the hose."

I know 9cm is not high. Mine is on 7cm and that's not high either. From my experience just keeping my pressure @ 6cm instead of 7 or 8 or 9cm makes a huge difference.

Have you said what mask you use? Is it one of those darn full face masks? Do you have to use one? If you can, see if you can make one of the nasal pillow interfaces work for you. They are much more easy to tolerate.

wader, who only plagerizes Liam's "gig" when addressing Liam.

[Liam1965]

Ah, Wader, but if I was on an auto-pap which occasionally has to bump up to higher pressure, wouldn't I need to keep the mask on tightly anyway, so it didn't leak when the pressure ramped up?

As to mask, I'm still evaluating my options. My first mask was/is the ResMed Ultra Mirage (FF). I got that because I have sinus troubles, and about one day in four, I'd be completely unable to use a mask that didn't allow mouth breathing. However, it's uncomfortable, and leaves a red mark on the bridge of my nose.

I tried on the Respironics FF mask (the only other one they had available), and it couldn't leak worse if it had holes in it.

I've had a 3 day trial of the Comfort (uh, yeah) Lite nasal mask (for the 3 out of 4 days when a nasal mask will work), and found it distinctly uncomfortable on my nose (might have just been the wrong pillow size) and sinuses.

Today I'm starting a 3 day trial of the ResMed Activa nasal mask. I noted elsewhere, ResMed is developing a Full Face version of the Activa, and I think that's going to be the FF mask for me, but of course it's not due out for 6-9 months.

I'm also going to try the Swift when they come in (currently on back order in NH). I've tried on the NasalAire II and wasn't impressed. Never tried the Breeze, my DME doesn't sell it.

Oh, and I have to say, given all of the horror stories people are telling about DMEs, Kim at Keene Medical in Lebanon, NH is GREAT. Yes, as a company, they still way overcharge, but she's had me back in there 4 times now, spending 45 minutes each time trying to find the right mask.

Liam, who can't seem to answer a simple question without supplementing with extraneous information.

[wading thru the muck!]

Liam said:
Ah, Wader, but if I was on an auto-pap which occasionally has to bump up to higher pressure, wouldn't I need to keep the mask on tightly anyway, so it didn't leak when the pressure ramped up?

Tough nut is an understatement. You'd think I'm asking you to part with your first born. Which is more likely to give you leaks...an occasional bump up in pressure or a constant hurricane? This cpap game is all about play'n the averages. Do what's more likely to give you good results and it likely will. Do what's more likely to fail and it likely will.

I'm not giving up on you yet, I asked SWS to comment regarding your Docs auto-pap comments. I think he's all wet, but SWS will be able to give you the details.

[Liam1965]

You'd think I'm asking you to part with your first born. Which is more likely to give you leaks...

I love occasional dyslexia. I had to read this twice before I realized you weren't suggesting my first born was more likely to give me more leaks than an auto-pap. (Which, granted, a few years ago was true, but he's pretty much given up bed wetting by now. But I digress.)

OK, I'm going to do some more research on it. I've still got a month and a half, because we pre-paid for two months rental on the CPAP machine I've got now, so I told myself I was going to decide by that time what final equipment I'm going with.

Meanwhile, do you have a really strong feeling between the Respironics Auto-Pro (with and without CFLEX) and the ResMed AutoSet (Respond or Spirit)?

If you talk me into this (and I'm too bull headed to admit that you might be wearing me down, yet), I might as well know which machine I'm leaning towards.

Liam, who doesn't appreciate comments about his, er, tough nuts.

[wading thru the muck!]

Liam,

I thought the same thing when I re-read my words in your post. I guess I need to proof read and add punctuation a little better.

As far as an auto to choose. If you truly have obstuctions so shallow that your Doc feels the auto won't respond to them, you should consider the Puritan Bennett 420E. It's a great machine and rested gal has had much luck tweaking the flow limitation settings so that it doesn't miss these obstructions (I say "tweak', but it's a matter of turning off one or two switches in the software. The other autos don't have this option. The PB420E is one of the machines I have and I love it.

Link: Puritan Bennett 420E w/HH & software

As far as your "nuts", be glad they are so tough since you have someone like me trying so hard to "crack" them.