CPAPtalk.com

Best tips:

1. Stop believing everything the DME tells me. Actually, "anything" is closer.
2. Avoid using the ramp--it's just 45 minutes of missed therapy.
3. Never leave my CPAP equipment at home when I travel.
4. Never sleep without it...not even short naps.

Thanks everyone! I had eight miserable months of therapy before I found this forum. Mine is a success story now and I'm thankful.

Sleeping Tiger wrote:
7. Different people have very different needs. For example, some may need a humidifier, liners, wraps, hose management, some not. I've had a few friends read this board before getting machines and decide they must have all these different things to make it work. Just start out, and add what you need as you go.
8. If it's overwhelming just concentrate on one or two things to learn and add the rest as you go along. Yes, it's a lot to learn but the reclaiming of your life is worth it.

These points are so helpful to newbies who are already feeling this is just too much to deal with. I had to remind myself early on that every post wasn't necessary for me to read. Instead of using my few working brain cells to understand the complexities of mixed apneas, the extra settings on a bilevel machine, tips to properly fit a mask I didn't even own, etc., I found I did have enough brain power left to comprehend those things necessary for MY treatment. The rest I added in later as interested or as pertinent.

So many of the basics are already covered, but these were key to me:
1. Getting a data capable machine. My first 5 months were hell with ineffective treatment and didn't even know it. If I'd been reading data it would have been obvious quickly that my machine almost never left ramp.
2. Understanding the treatment. Repeated trips to doctor and DME when I kept worsening yielded no appreciable resolution. I came here and in one night my CPAP treatment began to turn around. Instantly fell asleep but jerked back awake almost as quickly. Someone here said that my problems were during my ramp period, so to increase my ramp pressure and since I fell asleep quickly, decrease the ramp time. Instant difference! I realize some current machines will now interrupt ramping to address impending events, but even so, if the ramp is set too low it may not be able to reach an effective pressure in a timely manner. I had been told by the DME that any time I woke up to just hit the ramp button to start over. Didn't realize that since I woke often this was condeming me to hours each night of ramp instead of therapeutic pressure.
3. This forum has taught me critical thinking and problem solving skills. Granted, some of that was seeing what happened to others who stepped in the minefields here. But I learned to think before I speak and to be willing to at least attempt to problem solve if I was going to whine.
4. I learned how other medical issues interact with our sleep issues. Like assessing all meds for side effects. Like going out on the internet and finding RELIABLE sources of knowledge. Like learning how my particular situtation of having RLS and PLMD could affect my sleep apnea treatment. In all, it's been a learning experience, and I feel real proud of all I've learned.

I think there has been tons of great advice on this forum. I direct people here all the time.

For me personally, I think it helped immensely that somebody told me there was a smaller size headgear for my mask. My DME claimed there wasn't. And my mask went from fighting with me to fitting perfectly. Huge improvement.

Overall, though, I would say that our most important advice is to be proactive. Don't believe everything your doctor or DME says. Make sure you get a machine with full data. Learn how to review your own data and make changes. If you can't figure out, get help (usually from here). But don't just let it go. Be proactive and make your treatment work.

Bump so this thread stays at the top.

Sleeping Tiger wrote: I consider this board my school, providing far better information than I received from my Dr. I'd get on here and just read regularly and search the archives for specific issues ...
I'm not joking when I said I treat this like a school, when I first started I was reading at least 5-6 times a week for hours after work. The information is here, you just have to do the work to learn it.

Exactly how I feel about this board, I'm pretty sure had I not found this forum very early on in my diagnosis I'd be one of the many who sadly have a CPAP machine in the basement just gathering dust.

Best tips:
* Soft cervical collar to reduce mouth leaks and flow limitations
* Everyone is different, so only by taking charge of my own treatment and making it as comfortable as possible can I make this work
* Mask up every single night, all night, no sleeping without the mask. Hard to do but when I decided to just do it, no matter what, it actually worked. My brain got used to having this on my face.

BUMP.

When I started I was handed a CPAP machine that only offered compliance and summary data.

I fired my DME and hired this forum to help me sort things out.

I quickly realized that the data would be important to dial in my therapy so I purchased an APAP machine that gave me data. This forum helped me set things up and helped me become aware of what to look for in my data in an effort to maximize the benefit from my therapy.

A big thanks to everyone.

In addition I ran across someone with special needs and little resources. Through the contacts here I was able to assist them it getting a machine and networked them to get information on how to set the machine up, find and fit a mask, and read the data to assist in further adjustments.

A big thanks from Mirela and Florin in Romania.

HoseCrusher wrote:A big thanks from Mirela and Florin in Romania.

Have you heard from them lately? I have often thought about how he might be doing.

I haven't recently heard from them...

At the time Florin was rapidly regressing. I believe he was diagnosed around 2010 and with a 3 - 5 year life expectancy he may have passed.

I did hear from Mirela about a month after he got the machine and she reported that his quality of life had greatly improved. That made all the effort worthwhile for me, even if it may have been only for a short time.

Thanks for your help.

HoseCrusher wrote:
At the time Florin was rapidly regressing. I believe he was diagnosed around 2010 and with a 3 - 5 year life expectancy he may have passed.

Yeah...he was in pretty bad shape. If he did pass....at least we know that we helped what time he had be more comfortable. I couldn't remember exactly when we did all that. It probably has been long enough that the inevitable happened. I was just hoping you had maybe heard differently.

ChicagoGranny wrote:

Goldie54914 wrote:
So I am wondering what is the best tips that you received from posters on this board?

Good idea to start this thread, Goldie! If it continues to go this well (DAYMX5's post notwithstanding), it's going to rate being pinned to the top of the index - a good resource for newbies to read through.

I was going to say the same thing, but you beat me to it

49er wrote:Bump so this thread stays at the top.

BUMP

Thanks Pale Rider for your comment.

One of the best bits of advice is to use your foe button. (registered members only)
This allows one to ignore comments by negative people, and focus on the real function of the forum.

• Padacheek
  Sleepyhead

so far...