CPAPtalk.com

you sure don't want to wait 5 mos. to see if you're doing allright. Call the DME (durable med. equipment) supplier, or RT (resp therapist) and demand that they come to you/or you go to them...explain immediately what your problems are, there are many masks...

I take it your on straight CPAP, why aren't you on APAP? APAP will give you the pressure you need when you need it, rather than blowing maybe too much pressure.

Check these things out, and let us know.
Gail z

my titration study was set for a straight 12.
I demanded autopap, got my range at 7-14. I do not think in the 5+ mos. that I've hit the 14 once. So checking my silverliing software I can see daily what I did overnight. I've gotten down episodes to less than 10 combined with the hypopnea's.

It may be the DME didn't take the time/trouble to explain things thoroughly to you. They are a whole different thread of comments on this board.

But check it out for your own pc of mind.

ok?

[quote="Anonymous"]Hi All

Has anyone on here had severe problems getting to sleep whilst using CPAP?

I was diagnosed with severe sleep apnea in january. I have had a cpap for 6 weeks now and have not once managed to fall asleep using it. I really want to gain some benefit from this machine and try to use it every night but usually lay awake until around 4am and then take it off and fall straight to sleep.

Its getting very annoying because if I have a long day planned I now dont want to use the machine so I get a better nights sleep!

Even though I am having 70+ apneas an hour I was still managing to keep a relativley normal life, since using CPAP it has gone down hill fast.

If anyone has any advice or thoughts they would be greatly appreciated.

Cheers

Jon

Ohhh!

My apologies to Uncle Bob for mistaking his moniker "Wizards of Wind" for an Oziism!

- JB

Thanks for all the encouragement, I do really want this to work and am willing to try anything (well almost!)

To give you a better idea if what I am using/going through you have to remember that I am in the UK have to deal with our National Health Service.

I have been give a ResMed S6 Lightweight becasue that is all my local sleep clinc has. When I say local, its a 2 hour drive. I am using an Ultra Mirage Full face mask because I have problems breathing through my nose. I dont have a humidifier but intend to fix that.

Unfortunately due to the lack of facilities in the UK I have to wait for an appointment. I had to wait 2 years from vsiting my Doc and complaining about being tired to getting my first consult. I am also STILL waiting for a consultaion about a) Removing my tonsils that take up 2 3rds of my throat and b) Sorting my nasal breathing problems.

My hope is that after removing my tonsils, in a hospital an hours drive the other way! and having my nose fixed (no idea where that will happen) I will be able to demand another Sleep Survey and try a different mask.

To give you an idea about the type of support I have had, I did a home study with a mchine the hospital gave me and had to wait 2 months for the results. When I went in for the results, the doctor started off by saying he was going to book me in for a CPAP and would find a date for me. I then asked what a CPAP was and was told with some supprise that it was a mask I would have to wear whilst I sleep. With no more info being forthcoming I then asked how long I would need to use it for and got the response "Oh just for the rest of your life". I had to ask to see the results of my tests.

I am going to try the suggestion of weqaring the mask around the house after giving it a good clean.

As I said I do want to make this work which is a shame because it means I have to change my job. I lead expeditions and my tent doesnt have mains power So unless there is a battery operated CPAP that will last a week then its a real job for me. Plus it might scare the kids I work with having Darth Vader sleep in the tent next to them

Thanks

Jon

Oh, Lordie! Do NOT go for the throat surgery. Did they tell you it takes at least two weeks of extreme pain and nothing but liquids that you can barely swallow before they know if it works? Did they tell you that you will more than likely aspirate everything you drink, and anything dry will catch in your throat because you have no uvula to help it down? Did they tell you that these types of surgeries may prevent snoring but often do nothing to get rid of the apnea for good and you will more than likely still need one a year or two later? Did they tell you that after several months on CPAP that your palate will tighten up and won't need to be tucked up or removed? No adult should have their tonsils removed if they can help it. It is extremely painful surgery. Nothing like when you are a kid.

Using a heated humidifier will also help relieve congestion in your nasal passages and even with a deviated septum you will be able to breathe much easier. You might need to use a steroid nasal spray for a few months when you go to bed, but I've found that after about 3 months I didn't need it anymore unless I had a cold or allergies bothering me. The humidity really helps with congestion overall and helps to heal up your throat and nasal passages.

You S6 is OLD. The latest model is the S7 and they are due out shortly with the S8. These machines don't take software, but otherwise are pretty good machines.

There are battery packs you can buy for most CPAPs. Many people buy an inverter and a big Marine type battery to run them where there is no electricity. I think they will last a week without recharging that way. But the Marine batteries are HEAVY, so not for backpacking when you are camping.

To be honest I haven't been told anything as I am still waiting for a consult. I have read it can be very painfull in adults but I am still interested as I am sick of getting tonsilitis and have tied various nose sprays in the past including one that I had nearly stand on my head to administer.

I know the S6 is old but its all they have available. Once I get this sorted I will save my pennies and buy my own and give the S6 back. There are some that run from 12v which would be good as I also go on 4x4 expeditions to the sahara desert 2-3 times a year.


Jon