CPAPtalk.com

Seven tips . . .
1. how to change my own pressure
2. to obtain a humidifier (passover)
3. strap covers
4. mouth tape
5. Lansinoh for dry lips
6. KY (Regard) gel for a better seal (nasal pillows)
7. memory foam contour pillow

rosiefrosie wrote:Keep my mouth shut

I'll tape to that!

Plus the whole thing about being able to get the s/w to monitor and help me control my own therapy.

archangle wrote:

idamtnboy wrote:I haven't been able to find Lansinoh around here, not Walgreen's, not Walmart, not local pharmacy, not nowhere. Any suggestions where to look again, or some more?

If all else fails, walgreens.com mail order. What you need is called "HPA lanolin".

Thank you, and also others with their suggestions.

Learning I should look for "HPA lanolin" info helps a lot. According to Walmart.com the store I usually shop at has it in stock @ $9.97. Walgreens.com has it for $10.99 and drugstore.com for $7.97. Of course sales tax and shipping changes all that. Interestingly, walgreens.com shows it in stock at local stores, even the one where the pharmacist couldn't find it for me last winter!

Oh well, just points out once again that the American retail mantra "The customer should always be first, especially when it comes to letting themselves find what they want!" really is the rule!

Things the forum has helped me with but I must place the mask liner as number 1 overall. Silicone was not working for me at all. My skin was very irritated by it and once I had the mask on for a few hours moisture would appear between my skin and the mask (no doubt causing the irritation). This also yielded the dreaded "face farts" so even small leaks would wake me up. Of course the mask was not comfortable and required cleaning every day. Mask liner solved all those issues and without it I am sure I would have gave up on therapy.

1) Mask liner
2) Don't trust DME, Doctor, Insurance, take control of everything, educated yourself, no one cares about your therapy more than you (maybe your mom!)
3) EPR can do more harm than good
4) APAP is not always "better" than straight CPAP
5) Your sleeping position can drastically affect treatment (side sleeping allows me to set base pressure about 5cms lower than back sleeping)
6) What UPS system I need for backup until my generator kicks in
7) Help with not feeling so sorry for myself as so many others here are having a worse go of it than I am
Having others to look over my datacharts and make recommendations from day to day before CPAP worked and I was in no condition to do it alone (Pugsy in particular was very helpful)
9) It helps to have friends in similar situations and everyone here I feel a bond with that people without CPAP would not understand
10) Manually adjusting humidity and hose temp can make a huge difference
11) Placing the CPAP in my nightstand drawer eliminates the Darth Vader type noises along with a background fan
12) Uncle_Bob making the software so easy to find and dozens of others for pushing my knowledge of my data charts above my doctors understanding
13) Quit messing around with settings, at some point let it go to see whats working and whats not
14) The real whiners on here remind me what not to do, work the problem.
15) I'm not alone, it's a treatable illness and I should consider myself lucky and every time I meet someone with untreated OSA I realize just how lucky I am to have found this place.
16) You have not failed until you decide to give up.

Get a recording oximeter

Data capable machine even if you have to pay for it yourself - it will be a good investment esp if you are a medication induced apnea patient changing meds

KNOW what you insurance covers -YES some will cover masks as needed-mine is one we've tried 9 different ones ( Four in the initial 2 hospitalizations, 2 in sleep studies, and the other three since in the initial 11 months. Mine will even cover pad-a-cheek if I can just find a DME that has them and accepts Medical Mutual.

YOU are responsible for making this work-it's your body take care of it.

Bright Choice wrote:Question everything. 

Laugh a lot. 

I can't do better than that

Mars

Once you realize that the medical community can't help you, become an active member and you'll never feel you're in this alone. We would have quit this therapy long ago.

Like so many others, there is no way to pick just one! Some of the best are:

I am not alone
If you don't take charge of your own therapy, no one else is going to do it for you
Don't give up, or let a few bad nights discourage you

And lastly, this is the best place to ask questions, get support, and just talk about what you are going through. The folks here are the greatest - and some of the most helpful people on earth!

Narrowing the advice down to one specific tip is incredibly hard. What isn't hard is coming up with the biggest benefit I received by coming here:

Help in getting over my absolute fear/dread of starting Cpap. It was SO hard for me to transition, and the people here made me realize I was still OK, my situation would work out. Wearing a mask at night didn't make me "less than."

Thanks, all! I COULD NOT have come this far without the support.

DONT GIVE UP.

The velcro fix for slipping headgear or chinstrap straps!

Resister wrote:Narrowing the advice down to one specific tip is incredibly hard. What isn't hard is coming up with the biggest benefit I received by coming here:

Help in getting over my absolute fear/dread of starting Cpap. It was SO hard for me to transition, and the people here made me realize I was still OK, my situation would work out. Wearing a mask at night didn't make me "less than."

Thanks, all! I COULD NOT have come this far without the support.

drdrew wrote:DONT GIVE UP.

For anyone on CPAP, IMO these are perhaps the most important tips out there. The technical advice is worthless if someone gives up or flakes out or if they cannot accept that they have this issue. I've heard that as much as 50% of the people who start CPAP end up quitting it and that is so sad.

As long as someone perseveres and knows it's ok to have sleep apnea, there is almost always an answer to the techincal issues.

What a great thread. And a chance to say THANK YOU to all the people here who could be doing something else but are on here helping others.

I know I would not have made it (2 years now) without this forum. My first two weeks were horrible.My hands were shaking just trying to put the mask together and get it on.
I was so sleep deprived and scared.

Knowing I wasn't alone and there were people who would help me even if it was 3 A.M. meant so much to me.
The people here helped with my acceptance, it's good to know your not the only one.
Where else would you go for trouble shooting? I still have no idea. Sometimes we just need a new idea to make things work or improve on what were doing.

The one thing I " learned" on here that has helped me the most is mouth taping.
I never would have thought of it on my own and never would have done it if not for RestedGal. She really can point one in the right direction...

This is the ONE:

Cuda wrote: 16) You have not failed until you decide to give up.

I so appreciate all the good folks here who made my therapy possible.

The best tip I ever got was to go back and read posts -SWS has made to this forum over the years.

I had to look up some words and do some outside research to get the gist of some of his posts. But it was definitely worth every minute--time well spent for me.

It taught me much about (1) OSA, (2) PAP, and (3) how to be a welcoming gentleman in a barely-moderated public forum.

I admit that I'm still working on applying what I learned with that third one.