What do you wish you had known?

[Wulfman]

When I started CPAP about 9 years ago, the doc I saw was a student doing his ENT rotation thru the teaching hospital. All this stuff was real new to Oklahoma back then, and I could tell by talking to the guy I knew more about SA than he did...and I didn't know much.

A friend gave me an old Sullivan V that he couldn't get use to and a Sullivan bubble mask. Talk about a crappy mask. Anyway, when they did my study they used an Adams nasal pillow system, and I liked it, so went to a DME and bought one. Think I paid $175 for in in the late 90's.

No humidifier, no follow up at all, in fact, I took the machine with me when I bought the mask with the Rx for my pressure and she set it up.

Went along about eight years with what I thought were no problems. Never gave the machine or mask a second thought, just used them.

Started having problems about a year and a half ago and long story short, solved them with:

1. The help on this forum.
2. CPAP.com offering good equipment at reasonable prices (read no insurance)
3. Rested Gal. (thanks again)
4. Getting my mouth to seal, first with tape and now polident strips.
5. Learning to read and get my data every day so I can see what is happening.
6. After about 6 months trying to make APAP work, I went back to CPAP and haven't looked back since. I don't handle the various pressures well and do much better on a constant pressure. Still glad I have an APAP, and if things get weird again, I know I can run it in APAP for a while and see what my sweet spot is.
7. James Skinner's great Analyzer program.
8. Getting a humidifier with my new machine and then learning about the joys of rainout! Spending more money on an Aussie Heated Hose...LOL.
9. Snoredog for his wisdom and willingness to say what he thinks...even if it hair lips the Pope.
10. Sleepguy's Pur-sleep product.
11. Babette for keeping me in stitches...

JeffH

As I remember, you were having mouth-leaking problems....
Glad to hear your therapy is doing well.

Your first thread:

viewtopic.php?p=131226&highlight=#131226

Den

[JeffH]

When I started CPAP about 9 years ago, the doc I saw was a student doing his ENT rotation thru the teaching hospital. All this stuff was real new to Oklahoma back then, and I could tell by talking to the guy I knew more about SA than he did...and I didn't know much.

A friend gave me an old Sullivan V that he couldn't get use to and a Sullivan bubble mask. Talk about a crappy mask. Anyway, when they did my study they used an Adams nasal pillow system, and I liked it, so went to a DME and bought one. Think I paid $175 for in in the late 90's.

No humidifier, no follow up at all, in fact, I took the machine with me when I bought the mask with the Rx for my pressure and she set it up.

Went along about eight years with what I thought were no problems. Never gave the machine or mask a second thought, just used them.

Started having problems about a year and a half ago and long story short, solved them with:

1. The help on this forum.
2. CPAP.com offering good equipment at reasonable prices (read no insurance)
3. Rested Gal. (thanks again)
4. Getting my mouth to seal, first with tape and now polident strips.
5. Learning to read and get my data every day so I can see what is happening.
6. After about 6 months trying to make APAP work, I went back to CPAP and haven't looked back since. I don't handle the various pressures well and do much better on a constant pressure. Still glad I have an APAP, and if things get weird again, I know I can run it in APAP for a while and see what my sweet spot is.
7. James Skinner's great Analyzer program.
8. Getting a humidifier with my new machine and then learning about the joys of rainout! Spending more money on an Aussie Heated Hose...LOL.
9. Snoredog for his wisdom and willingness to say what he thinks...even if it hair lips the Pope.
10. Sleepguy's Pur-sleep product.
11. Babette for keeping me in stitches...

JeffH

As I remember, you were having mouth-leaking problems....
Glad to hear your therapy is doing well.

Your first thread:

viewtopic.php?p=131226&highlight=#131226

Den

[Moby]

I figured out which masks I wanted to try from the mask fitting tool and the threads/reviews (all on this site). Then I asked my clinic for them. The staff at the clinic were helpful but ignorant about all but a few of the masks they stock, so it was imperative I knew how they fitted!
The staff wanted to put me in masks that were too tight, because the numbers looked good in the clinic, but of course they became very uncomfortable when I got home. So I had to be firm about the size I wanted to try, and then they were suprised when the number looked good on them too!

Not wanting to put the staff down here. Just that they don't actually *use* the equipment. So get as informed as you can (in a sleep deprived state!) about the stuff you consider buying.

Good luck

Di

[ZZZzzz]

I WISH someone had warned me about mouth breathing.

-Bev

[goose]

I found this forum very shortly after initial diagnosis, so I had a leg up on the acquisition and use of all my equipment.

My usual best advice is -- Never give up!!!! It'll probably get bad. It'll probably get weird, but eventually it'll get good!!!!! Ya just have to stick with it....

This group; This family, has done more to promote good habits, good information, good treatment than anything else I can think of.....(along with insane humor....keep an eye out for Babette's posts (yeah Babs - Jeff's right) and do a search on mikemoran....that's just a couple. IMHO - Humor is what keeps us all sane (whatever that is)!!!! )

Keep us up on how you're doing!!! Ask questions when they come up. Read, read, read........You can never learn too much!!!

Good luck -- take care
cheers
goose

[Moby]

Get well used to the equipment before you try to sleep with it. Don't wrestle with it at bedtime when you're tired.

[wabmorgan]

Well.... I just wish I had known eariler. I'm 42 but I had felt tired for the last 10+ years... roughly.

ENT and sleep doc supect I might have been suffering from this even before then.

[seanconnery]

I wish I had known about OSA much before this so that my father might benefitted and probably have lived longer....

[SleepGuy]

In no particular order:

1. http://www.cpaptalk.com

2. The effects of oxygen desaturation. OSA is much more than a sleeping disorder.

3. Sensory Desensitization - that it's honestly possible to get "used" to your cpap to the point that you don't even NOTICE the pressure and hardly notice the headgear etc.

4. I wish I had known about my OSA earlier though I can't complain. My grandfather must have suffered with it for 40 years without having the slightest clue. And he paid for it--diabetes, hypertension, double bypass operation, strokes, irritability, depression, etc.

[Guest]

I second the comment about being warned about mouth breathing. Cpap does not work period when you breath through your mouth with a nasal mask. If you are a mouth breather or leaker you need to solve that first before you can figure out if your cpap therapy will work. You can spend a long time with poor treatment while adjusting things, changing masks, etc when the actual problem was mouth breathing. I finally had to figure it out myself. There were no computer forums then and the doctors and DME did not know enough to warn me.
GeneS

[ozij]

The fact that you didn't mouthbreathe during titration does not mean it won't happen at home.

I slept so bad during titration (28% sleep efficiency...) that my mouth was closed (probably clamped shut by tension) the whole time.

Eventually -I discovered that some nights I will mouthbreathe - some nights not.

I was sent home for an autopap titration, and it was such a miserable experience in the beginning (the mask the mask....) that I discovered this forum (and the TAS one) in time - and the tips and information were wonderful.

The system here is different - mask fitting, and even machine fitting are first done by trial. By the time the clinic switched me to another kind of auto with a nasal pillows mask I knew software could be bought on cpap.com, got a copy from the DME - who was astute enough to know that my having the ability to track data would raise his chances of having me buy from him and not from the competition - so I was tracking my trial data. When it came to conclusions, I could tell the RT that I wanted a self adjusting machine. Insurance here has different co-pay for autos than for fixed, and I was ready to pay for the better option.

It's ironic I use it now at a very narrow range - but I would not have got there if it weren't for reading here, and tracking my results diligently.

The ability to control the pressure was also extremely important for me psychologically - having experienced trouble breathing without a cpap, the experience of a machine resisting my exhalation was pretty frightening - I couldn't relax enough to fall asleep - or stay asleep - especially after the first auto zoomed into the stratosphere (relatively speaking...).
O.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, Titration, CPAP, DME, Nasal Pillows, auto

[Sundown]

I was handed a machine and that was it. This forum is a life-saver for both my husband (who loathes his treatment and rips his mask off at times) and myself. I can honestly say that the members here have helped me with my sanity through my entire experience.

I agree with one thing, if my father had cpap, who could still be alive today. He passed away at 53 (he had diabetes and other health problems) and I remember him snoring so loudly that mom made him sleep on the couch.

I know that cpap saved my husband's life.

[TGregg_Not_Logged_In]

3. Sensory Desensitization - that it's honestly possible to get "used" to your cpap to the point that you don't even NOTICE the pressure and hardly notice the headgear etc.

I'm so used to my CPAP that when I do take a CPAPless nap (in a car, on a bus or train) that it feels like I'm wearing the gear when I wake up. I can feel exactly where the straps are and the mask.

And that started after just 6 months of 100% compliance, except for those naps.