New and recently diagnosed with sleep apnea

[Lissalove7]

Hello all! I was recently diagnosed with sleep apnea which I initially thought was due to my thyroid. I had my first sleep study done New Years eve and then I had my titration study done in January. I received my equipment on January 27th. I have been lurking around the forums before joining and have learned a lot of information in just the past few days. I have learned that my machine is not data capable and I am jealous of all of the other machines, lol. My DME called the other day to check in to see how my therapy was going and mentioned they would be calling periodically to check in on me. I figured I could give this machine a go and see how it works out for me and then if I really want a data capable machine then I could mention it to my DME the next time they called. Is that how it works? I have only been using the machine for about a week. It has been hard adjusting to it. Some nights have been ok, others have been a nightmare. Anyway, my pressure setting is 11. I have noticed that during the day I have been having breathing problems. Sometimes it feels like I am fighting for a deep breath. Could this be my lungs getting used to the machine or something different? Just wanted to get acquainted with the board. There is a lot of knowledge here!

Melissa

[THE HARD TRUTH]

I WAS FIRST DIAGNOSED WITH OSA IN JULY 2008 AND LIKE EVERY ONE ELSE WHO HAS THIS DIAGNOSES,IS WAS TOLD ABOUT THE GOLD STANDARD.EVERY APNEA WEBSITE THAT I GO TO YOU READ THE SAME THING.FIRST OF ALL I AM NOT IN DENIAL,I HAVE APNEA AND IT CAN KILL ME.FOR SOME PEOPLE THEY ARE TOLD OVER AN OVER AGAIN THAT CPAP IS THE ANSWER.APNEA PATIENTS ARE BRAIN WASHED INTO THINKING THAT THERE IS NO THERAPY BUT CPAP.AT TIMES I THINK THAT MOST SLEEP DOCTORS HAVE A LOT OF STOCK IN THE CPAP COMPANIES AND THE DME'S.AND MAY BE GETTING KICK BACKS FROM THOSE COMPANIES.THE DOCTORS AND THE DME REPS TELL YOU JUST GET USED TO HAVING HURRICANE KATRINA STRAPPED ON THEIR FACE.JUST GET USED TO THE OVER PRICED MASKS THAT LEAK AND THE 50 LBS OF TIGHTNESS ON THEIR STRAPS JUST TO HOLD THE THING ON YOUR FACE THEN THEY TELL YOU THAT THE PERFECT MASK IS JUST AROUND THE CORNER.IT REMINDS ME OF THE SCENE IN THE FIRST ALIENS MOVIE WHEN THE HALF SQUID AND HALF CRAP CLIMBS ON TO YOUR FACE.FIRST OF ALL CPAP'S ARE OBSOLETE.THEY TELL YOU YOU WILL GET USED TOTHE RESISTANCE OF YOU LABORED BREATHING OUT AGAINST THE INCOMING PRESSURE. YOU KNOW WHAT I MEAN,IT'S LIKE BREATHING INTO A BALLON ALL NIGHT LONG.I AM A AIRCRAFT MECHANIC i KNOW ALL ABOUT OXYGEN MASK REGULATORS. PILOT DO NOT HAVE TO BREATH AGAINST 300 LBS OF PRESSURE.THERE IS ABSOLUTLY NO REASON THAT YOU HAVE TO ACCEPT THAT YOU CAN'T EXHALE NORMALLY. THIS IS THE 21ST CENTURY.BIPAS AND CFLEX ARE OPTIONS FOR A LOT OF PEOPLE.THEN YOU HAVE PEOPLE LIKE ME,THAT EVEN THOUGH YOU HAVE A HUMIDIFIED FISHER AND PAYKIIL AND A HUMIDIFIER IN YOUR BED ROOM.YOUR RINITUS MAKES YOU APNEA THROUGH YOUR NOSE.THEN THEY TELL YOU THAT THEY HAVE TO CUT OUT YOUR SEPTUM AND PACK YOUR NOSE COMPLETELY WITH GAUZE FOR THE NEXT 6 WEEKS SO YOU CAN'T BREATH. THE ONLY REASON THAT I AM WRITING THIS IS TO SAVE YOU FROM WHAT I HAD TO GO THROUGH.I DECIDED TO GO THE ORAL APPLIANCE ROUTE AND I AM SURE GLAD THAT I DID. SINCE I HAVE NO TEETH A TAP WILL NOT WORK FOR ME BECAUSE I CAN NOT MOVE MY JAW FORWARD. AND THEN A DENTIST IN COLUMBUS OHIO FOUND A SOLUTION FOR ME. iT IS CALLED AVEO tsd AND IT IS MADE IN NEW ZEALAND BUT IS APPROVED BY THE FDA. APNEA IS SIMPLE MECHANICS. YOUR TONGUE BLOCKS YOUR AIRWAYS. THE TOUNGE STABILIZING DEVICE THROUGH SUCTION HOLDS YOUR TONGUE OUT.IT REALLY WORKS.100% COMPLIANCE FROM THE FIRST DAY THAT YOU USE IT.iT COST THE SAME AS ONE CPAP MASK $150.YOU JUST HAVE TO GO TO A DENTIST AND YOUR SLEEP DOCTOR CAN FIND A GOOD ONE FOR YOU. BUT IF YOU STILL WANT TO BELIEVE THAT YOU HAVE TO ACCEPT CPAP GO AHEAD AND KEEP TELLING YOURSELF THAT IS IS THE ONLY THING THAT WORKS OUT THERE.kEEP LISTENING TO THE BULL THAT YOU WILL JUST GET OVER IT

[RipVW]

Hello & Welcome, Lissalove7! Glad you found this forum—SO much useful info and everyone here is so willing to help!
Can't say that I agree with with that first response (from "The Real Truth" seeing now that it has been removed as SPAM) to your message--most of us here who have stuck it out through getting our CPAP therapy right believe that CPAP is the ideal solution to our sleep apnea. Re your machine, if you want a data capable machine (and ALL of us here think that a data machine is needed), then you should contact your DME right away and tell them. It might be difficult to get them to do an exchange now that you've used the other machine for a week, but worth a try. I had the same thing happen to me, and my DME required a new, specific prescription from my doc. So I got the prescription, and they reluctantly made the exchange. Good luck!

"You are getting sleepy . . ."

[rogier40]

Welcome, too!

The daytime breathing difficulty you mention seems odd. I did not experience that, nor do I recall other newbies mentioning that. Anyway, I would encourage you to continue to use your system...you will get more familiar and comfortable with it in time.

How do you like the Quattro mask?

[mhurley3]

You ARE a newbie, aren't you? You will find that it takes awhile to get used to CPAP therapy and you will have to tweak things to solve your own unique problems, but I think you will find that it is worth it. Besides the significant health benefits, you will feel SO much better. I had my sleep studies done last fall and received by equipment in early November. I feel better now than I have for the last ten years. We all went through the adjustment period and came out on the other side. Don't let the first reply scare you, you can make the adjustment. I know there is no way I will ever be without my CPAP.

Good luck!

[Victoria]

Hi! I'm pretty new, too....good luck to both of us!

[Lissalove7]

Welcome, too!

The daytime breathing difficulty you mention seems odd. I did not experience that, nor do I recall other newbies mentioning that. Anyway, I would encourage you to continue to use your system...you will get more familiar and comfortable with it in time.

How do you like the Quattro mask?

It seems to be working out for me okay. There have been a few nights where I wake up because of air leaking and I tried to get the straps tighter. I think I just need a better pillow to accomodate my side sleeping. Overall, the mask works great for me.

[Lissalove7]

Hi! I'm pretty new, too....good luck to both of us!

Thanks, good luck!

[Jason S.]

I'm only about a month ahead of you. My machine isn't data capable either but I had a full night titration and wasn't that the point of it? How I feel in the morning and throughout the day, to me, is the best indicator of how well my therapy is working. I am sticking with this and will upgrade to the more sophistocated machine at a later time. I guess every night is an adventure, will it be nose bridge sores, leakage, morning gas, or all of the above? It took me two weeks before I found the mask had a hinge setting between the forehead and nose and I had it on the tightest setting. Moving it to middle has been better (but more leaks). But then there are days when I feel really good energy wise and my afternoon sleepiness has disappeared completely. I'm still tweaking though. Last night I washed my face with soap and water, didn't use the fabric bandage over my nose and felt like I had a good seal all night. I also didn't wipe down the mask with Citrix wipes. Was the good seal due to my actions or just a coincicence? I don't know. I have the Comfort Gel FFM but think I might try that Mirage Ultra as it seems to be a favorite around here.

[maddiecakes]

Hi,
I started on CPAP on Dec. 31. I, too, had my struggles like everyone else here and even remember flinging my mask across the room a few times. Now I'm sleeping like a baby and most of my former aches and pains are gone, which is worth it all by itself (I have had multiple injuries in various auto accidents and an auto/pedestrian accident over the years). I just got my first month's report back (which is required by my insurance to transfer from rental to acquisition) and my AHI is 1.6 and we've decided to lower my pressure from 10 to 8!! I hope my experience will encourage you. Don't give up!! I, too, sleep on my side and have found the Fisher-Paykel nasal mask is the best for me as it flexes a bit from side to side and keeps a good seal without springing hardly any leaks. In fact my leakage rate was very low.

On your daytime breathing issue - I haven't heard of that, either.

- Another Melissa

[Kiralynx]

Welcome, Melissa!

Gracious, what a time to be doing a sleep study -- New Year's Eve! Almost as good as getting ready for a colonoscopy on 2 January, which is what I did.

I've just passed my three-month mark with my BiPap, and almost 4 months since my first post. Ironically, I came here looking for information to help out my brother-in-law, and then got diagnosed myself!

Read the stuff under the yellow light bulb at the top of this page -- and go back to your DME and tell them you want a fully data-capable machine. It's absolutely invaluable... especially if there may be issues. Make sure you do this before 30 days is up!

They got my pressures almost right... but without the data from my machine, and all the reading I did here, I would not have been able to discuss this with the doctor and get the prescription changed. (I wouldn't have even known I needed the pressures changed, only that it wasn't doing its job.) Note: I could have changed the pressures myself, but elected to go through the RT and my doc, initially.

So, you're absolutely right to be jealous of the data-capable machines. You'll have a fight on your hands, I expect, but you'll do it!

[ChipsXJ]

I have noticed that during the day I have been having breathing problems. Sometimes it feels like I am fighting for a deep breath. Could this be my lungs getting used to the machine or something different?
Melissa

Hello. I am new, too. I started my machine last night. Some struggles but overall o.k.

Regarding the shortness of breath, That is actually what got me diagnosed, kind of.

I was experiencing the 'shortness' of breath during the day and it seemed to be getting more and more frequent, so I scheduled an appt with my doc. Just before the appt I realized I was actually unconscientiously holding my breath until I became aware that I needed to breathe. Then I would take in a deep breath and be alright for a while until it happened again. Sometimes seconds apart and sometimes hours. So, my shortness of breath was actually just me holding my breath unawares. It happens when I become very focused on a task. Doctor did not seem to alarmed by this issue and after asking some other questions ordered the sleep study and the subsequent diagnosis of Obstructive Sleep Apnea.

Not sure if that can help you..........but there is my story.

Good luck with your recovery..............keep your head up and stay in the fight...........only we can help ourselves with this!

[Lissalove7]

Welcome, Melissa!

Gracious, what a time to be doing a sleep study -- New Year's Eve! Almost as good as getting ready for a colonoscopy on 2 January, which is what I did.

I've just passed my three-month mark with my BiPap, and almost 4 months since my first post. Ironically, I came here looking for information to help out my brother-in-law, and then got diagnosed myself!

Read the stuff under the yellow light bulb at the top of this page -- and go back to your DME and tell them you want a fully data-capable machine. It's absolutely invaluable... especially if there may be issues. Make sure you do this before 30 days is up!

They got my pressures almost right... but without the data from my machine, and all the reading I did here, I would not have been able to discuss this with the doctor and get the prescription changed. (I wouldn't have even known I needed the pressures changed, only that it wasn't doing its job.) Note: I could have changed the pressures myself, but elected to go through the RT and my doc, initially.

So, you're absolutely right to be jealous of the data-capable machines. You'll have a fight on your hands, I expect, but you'll do it!

Yeah a great night to have a sleep study lol. I received the cpap machine on my birthday!

[Kiralynx]

Yeah a great night to have a sleep study lol. I received the cpap machine on my birthday!

Hey, my husband's uncle used to say, "Don't care which number birthday it is, as long as it isn't my last!"

By getting -- and learning to use effectively -- your xPap. you're ensuring many more birthdays!