Hello my first post.

JerseyBiker · Post by **JerseyBiker** » Fri May 02, 2014 11:18 am

I tend to get long winded on my first introductory post to online forums . Late last November at the age of 58 I had a transient ischemic attack (TIA). After 2 days in a medical center and dozens of test they could not figure out what caused the attack (thank goodness for good medical insurance). My primary care physician referred me to a neurologist. After more test and many questions the neurologist asked me if I snored, had trouble sleeping and felt tired and sleepy during the day. I told her according to my wife I snore quite frequently and loudly but I felt I slept OK and I didn't really feel tired and sleepy. She asked me if I ever stopped breathing during my sleep. I told her my wife told me on a couple of occasions she thought I may have stopped breathing and I remember there were times I woke up and felt I was choking but that was very rare. She said that she think I may have sleep apnea even though I felt I was getting enough sleep and was not tired during the day. She said I may have been so use to the way things were I may not realize how much more energy I was losing for lack of sleep. She scheduled me for a sleep study test which I did in January. The sleep study test confirmed that I did have sleep apnea and stopped breathing about 30 times every hour. Needless to say I was more than concerned. I had no idea. She strongly suggested that I do CPAP therapy because there is a good chance the TIA was caused by my sleep apnea and if so there is a chance I can have another one or worst a full blown stroke. I had a second sleep study to determine what pressure I needed for the machine (9). I started using the CPAP system the end of March so it's been about 5 weeks now. I started out with a Quattro FX mask that kept sliding off my bottom lip at night. My insurance allows for a second mask if the first one does not work out but after that you are on your own. The mask I'm using now is a Quattro Air. It's a little more cumbersome with the strap on my forehead but it does stay in place better. The first couple of weeks I found myself waking often because of discomfort from the mask. I find it hard to adjust where it is not too tight and not have leaks. I'm getting a little more comfortable with it as time goes by. I'm sleeping about 6 1/2 to 7 hours a night which is about the same as before. I'm really not looking forward to being attached to a hose every night for the rest of my life but I guess I have to do what I have to do. I'm already a diabetic, have hypertension and high cholesterol all of which are under control with medication. I have read quite a few post in this forum and it is very informative. I'm sure I'll learn a lot here. I have a few questions I'll save for separate post later. Told you I was long winded .

Catlizg · Post by **Catlizg** » Fri May 02, 2014 11:47 am

Hi there and welcome from Buffalo. I've been on here about a month now and three weeks on CPAP. We seem to have similar findings. I'm 58 with hypertension, no diabetes but extreme difficulty losing weight. Virtually no apnea symptoms other than years and years of insomnia and restless leg syndrome for which I was finally sent for a sleep study. Result was 39 episodes per hour with oxygen going down to 78%, plus I ended up with low vitamin D and anemia. Explains a lot.

I have a pressure setting if 6 which is fairly low compared to most folks. I do really well with a nasal pillow mask. I knew us never do well with a regular mask. Have they given you the options of trying different masks? My DME gives me 30 days to trade in masks. I use a Swift FX with ear loops and forget I've got it on. I plan on trying the AirFit P10 in two months when I can get another mask. I've added aromatherapy oils, a fancy hose cover - anything to make the experience as pleasant as possible. I look at it this way...rather sleep with a hose connected to my face at night than any of the other possible side-effects possible from untreated apnea. You're young for a TIA. Hopefully, with compliance, never another one and maybe a decrease in diabetes, hypertension, etc. It's uphill from here.

Bill44133 · Post by **Bill44133** » Fri May 02, 2014 4:00 pm

Welcome to the forum... You are in a good place here.. Lots of helpful people here..

chunkyfrog · Post by **chunkyfrog** » Fri May 02, 2014 4:21 pm

Welcome to the forum. If insurance will not pay for subsequent masks, cushions and other supplies,
many here purchase online--for much less than local DME's charge.
The middle segment of the blue box (above) labeled "CPAP product News" has links to the sponsors of this forum, for one.
Other sources exist, and are often discussed here.

JerseyBiker · Post by **JerseyBiker** » Sat May 03, 2014 9:25 am

Catlizg wrote:Hi there and welcome from Buffalo. I've been on here about a month now and three weeks on CPAP. We seem to have similar findings. I'm 58 with hypertension, no diabetes but extreme difficulty losing weight. Virtually no apnea symptoms other than years and years of insomnia and restless leg syndrome for which I was finally sent for a sleep study. Result was 39 episodes per hour with oxygen going down to 78%, plus I ended up with low vitamin D and anemia. Explains a lot.

I have a pressure setting if 6 which is fairly low compared to most folks. I do really well with a nasal pillow mask. I knew us never do well with a regular mask. Have they given you the options of trying different masks? My DME gives me 30 days to trade in masks. I use a Swift FX with ear loops and forget I've got it on. I plan on trying the AirFit P10 in two months when I can get another mask. I've added aromatherapy oils, a fancy hose cover - anything to make the experience as pleasant as possible. I look at it this way...rather sleep with a hose connected to my face at night than any of the other possible side-effects possible from untreated apnea. You're young for a TIA. Hopefully, with compliance, never another one and maybe a decrease in diabetes, hypertension, etc. It's uphill from here.

Thanks for the welcome. Seems like I started a little before you. It's possible that sleep apnea has contributed to some of my medical conditions and hopefully the therapy will reverse or lessen them. I am 59 now and though I can lose a few pounds I do not think I am that overweight. I workout 3 to 5 days a week both cardio and strength training. I think that is why my diabetes and hypertension is borderline. I take very low dosage pills for diabetes. As far as the mask, I am on my second one as I mentioned before. My insurance company covers the cost of only a second mask if the first one does not work out. So I will have to pay out of pocket for any additional mask. I believe they said I can also get a new one every year or something like that. Anyway I am limited to full face mask because I am a mouth breather. Most of my life my nostrils close up on me off and on so I often cannot breathe through my nose. What are aromatherapy oils? Thanks

JerseyBiker · Post by **JerseyBiker** » Sat May 03, 2014 9:26 am

Bill44133 wrote:Welcome to the forum... You are in a good place here.. Lots of helpful people here..

Thank you very much for the welcome.

JerseyBiker · Post by **JerseyBiker** » Sat May 03, 2014 9:35 am

chunkyfrog wrote:Welcome to the forum. If insurance will not pay for subsequent masks, cushions and other supplies,
many here purchase online--for much less than local DME's charge.
The middle segment of the blue box (above) labeled "CPAP product News" has links to the sponsors of this forum, for one.
Other sources exist, and are often discussed here.

Thanks for the welcome and thanks for the info. I will check into it because I'm sure there is a better mask out there for me. As far as the other stuff, they are suppose to send me replacement parts like hoses, mask cushions and filters on a schedule.

chunkyfrog · Post by **chunkyfrog** » Sat May 03, 2014 11:44 am

I have tried many masks, chinstraps, and fancy-schmantzy bed pillows.
It took awhile to find the best combination, you will too.

jencat824 · Post by **jencat824** » Sat May 03, 2014 1:13 pm

Welcome to the forum. This is a great place to get help & encouragement. Mask issues, data issues, machine issues - all these are discussed here, so there is a wealth of info, not to mention a great group of people who create a family atmosphere on this forum. I've been on CPAP 14 years but didn't find this forum until year 12. If I had known then what I know now, I would have had more effective treatment all along.

Just post any question and you may also search at the top to get prior discussions for many issues.

Again, welcome aboard!
Jen

chunkyfrog · Post by **chunkyfrog** » Sat May 03, 2014 3:53 pm

Our search function is a bit limited, but you can ask the question of your browser,
which will likely bounce you right back here, and into an appropriate thread.

deerslayer · Post by **deerslayer** » Sat May 03, 2014 5:57 pm

WELCOME JB
TIA....boy does that sound familiar.
Pull up a chair & Glean all the info you can assimilate . Won't be long before your therapy will produce results & your health will start to improve. Being proactive about your health is the key.
Ride Safe Brother,
tim

Catlizg · Post by **Catlizg** » Sun May 04, 2014 6:51 pm

The aromatherapy oils are little disks that set in a metal tray that you place right behind the air inlet on your machine You put one drop of oil on the disk. I purchased my starter kit here at CPAP.XOM

https://www.cpap.com/productpage/Pur-Sl ... -Pack.html

I find that the Clear and Peace help clear any stuffy nose I might have when I put on my mask. If the scent is too strong I just partially cover the disk with one of the enclosed tiny storage bags. I also have quite a few essential oils at home for soap and candle making so will blend some of my own. Anyway, I found it helpful to have a pleasant scent distract me from what's stuck on my face.

JerseyBiker · Post by **JerseyBiker** » Mon May 05, 2014 7:59 am

Thanks a million everyone for the welcome, tips and advice. I'm sure what I learn here will be very beneficial. I am happy that this community is here. Before I started on this machine I had no idea CPAP therapy even existed. Learning from others with experience should make it easier for me to adjust to this life change.

Janknitz · Post by **Janknitz** » Mon May 05, 2014 2:16 pm

Hi Jersey, welcome to the forum.

I'm sorry to tell you that they gave you a "brick"--that is a machine with no efficacy data. I think that is not good for your situation, because optimizing your therapy is key to preventing further neurological damage. Your machine can't tell you if it's effective for reducing your episodes of apnea or if leaks or other problems are affecting the treatment you receive.

Please take a look at my blog posts below, especially "What you need to know BEFORE you meet your DME" and "Help, I'm stuck with a Brick". You need to CALL your insurance company to get a good understanding of what and how they will cover your equipment--DON'T take your DME's word for it.

Once you understand the need for EFFICACY data, enlist your neurologist's help. Ask him to intervene for you with the DME, that HE wants to see your efficacy data.

Whatever your insurance will cover for masks, the major manufacturers of masks have programs to replace masks that don't work for you within the first 30 days--a trial period. Whether your DME will agree to do the paperwork to return a mask is another question. But your therapy DEPENDS on getting the right mask--something you can wear comfortably all night long without excessive leaking. So the DME should work with you and you should be able to try as many masks as you need to until you find the one that works for you. So you may have to stand on your head and really INSIST that they help you find another mask if this one doesn't work for you. You must be a firm advocate for your own health.

chunkyfrog · Post by **chunkyfrog** » Mon May 05, 2014 2:43 pm

Aromatherapy is a great idea; I always like a little something to smell instead of DH's grody old feet.

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Machine	Mask

Additional Comments: straight cpap 12.20 AHI avg.0.79