Emerging...

[nichola]

I have been on CPAP now for almost a month. I was diognosed with very severe sleep apnea with an AHI of 144.3.

I believe i have had this for a very long time. I have snored exteremely loudly since I was a child. My best friend told me as a teenager I stopped breathing when I slept. But I never had it checked.

I have just finished my degree last year. It took me a year longer than it should have, but it is DONE. I failed a number of classes over the past 4 years and I realise now that it was from the OSA. I have been tired for a very long time. I had no energy. I was tired, depressed and putting on weight at an alarming weight (*Sigh* I weigh 140 kgs... and have put on over 50 of those in the past 2 years), but I assumed I was bored in lectures, thats why i fell asleep sometimes! and i was putting on weight cos I waqsnt moving, but didnt attribute the not moving to the OSA of course! I didnt feel excessively tired, but then again id have naps during the day.

Fast forward to 6 months ago. I got my first professional job! and I was so happy, this is what I have wanted for a very long time. It is not in my home town though and I have a 1.5 hour commute each way. IT is a long day but I am loving it. BUT I was falling asleep at work and always tired. I even fell asleep driving a few times. I just put it up to the long drive and the long days.... plus i had come down sick and couldnt seem to shake it.

My boss was noticing my falling asleep and this looked VERY bad for a new worker, esp a newly graduated one. She asked me if everything was ok. I said it was and said i thought it was due to me being sick (with what was later diognosed a phenumonia, realted to the OSA cos my body was sooooooo run down). IT took me a VERY long time to recover from my illness, much longer than it should have. But even after i was 100% better I was still falling asleep! My boss suggested it might be OSA. I was skeptical but began looking on the net and reading about it.

Reading about OSA I knew I had it... down to the nocturia, the symptoms were all present. But i put off going to the doctor... until my boss asked about it again.... and again.... I even preteneded to go to the doc and said it was an iron deficiency because I didnt WANT to admit that it was OSA to myself I didnt want THAT machine.

Finally I relented... explained my symptoms to the doc and explained my suspicions to him. He dismissed me... said it wasnt sleep apnea.... people dont need to pee frequently and urgently during the night cos of sleep apnea. I stated that many articles i read on the net said that the peeing thing was a symptom. He was SURE I had diabetes. I knew I didnt. In the end I convinced him to give me a referral if I agreed to have my pee tested for diabetes.... guess who was right! hahaha

Now it is 4 weeks in past the sleep study and diognosis and ive been on CPAP. I am EMERGING emerging from my death bed... emerging from my depression... becoming ME again... I no longer feel EXHAUSTED anymore.. i feel tired, but not likie my whole body is shutting down (it was... the sleep specialist said my liver was shutting down and oI used to breathe so loudly because my body didnt have the energy to do it quietly!!

Now i am sitting here with MAKEUP!!! on. I havent worn makeup in around 2 years, except for my job interview for my job. I am sitting here in nice clean clothes, I have washed my hair. I went out shopping today! and wwant to go for a walk this afternoon. I cant believe the difference.

I still have a LONG way to go. My apneas are in their 20's some nights and my pressures still need perfecting, plus getting my mask not to leak on my face 1/2 way through the night when i snuggle the pillow is still to be learnt... but im emerging.

[Muse-Inc]

WOW, great changes! I sure recognize the now I have makeup on! Welcome aboard! Great folks and info here!

[OntarioKevin]

Thanks for sharing that -it's inspiring!

We all come from different depths of darkness initially, and the sunlight is dappled at best. But it IS sunlight nonetheless.

And most of our experience seems to be one of leading physicians to the right conclusions, rather than having them know just from tests.

[harry33]

welcome,
I had it undiagnosed for many years, the normal signs of apnea being ignored by all my docs, I was told 'U must have depression,'
evertually I self diagnosed myself in 1995
the experience will cause me to live longer for never again will I trust any docs diagnosis or recommendation

their university training removes all their common sense and curiosity, IMO

what we need is a parented prescription med that supposedly makes a CPAP work better. drug co advertising reps have a unique way of getting their message thru to the medical profession, this will lead to them learning about sleep apnea

an example, xanax was originally promoted as a the cure for panic attacks., it had a special panic blocking effect not shared with other benzos, so that is how the medical and psychiatric profession learned what panic attacks were
later the panic blocking effect was found to not be there .... but the good work had already been done

docs and psychs are useful as script writers and to order tests or xrays you want done, but its Google for all doiagnosis now

[bdp522]

My boss suggested it might be OSA

I hope you bought her some flowers or chocolate! Many bosses wouldn't have known of OSA, and many would have just fired you. You have a wonderful boss who was trying to help!

Go to the profile section and enter your mask and machine. Use text as it easier for us to tell just what you have than if you use icons.

You're doing good so far, and your attitude is great! Sounds like you still have some adjusting to do to get the AHI down, but we can help with that when the time comes. For now just take a bit more time to keep adjusting to this new way of sleeping.

Brenda

[cnew]

I agree -- you have a wonderful boss! My doctor didn't resist, but I had to bring the matter to her and make the case for why I had decided a sleep study was in order. She was treating me for depression, she could see I was overweight, I had reported feeling tired, for which she checked my thyroid. But she never suggested a sleep study. I had to put the puzzle pieces together myself and ask make the case for it myself. My sleep study found "moderate to severe" sleep apnea.

So congratulations on your "emerging" and welcome to the club.

[Emilia]

Yours is an inspirational story... one you might want to copy/paste into the Newbie stories pinned at the top of the page. I, too, suggest you thank your boss over and over again...she may very well have saved your life. 144 events an hour is one of the worst I've heard of. My measly 17 per hour is nothing compared to what you've got....but none-the-less, many of our symptoms were identical. I presented with so many Red Flag symptoms of OSA and my PCP never once suggested a sleep study. It took an astute cardiologist to dig deeper with an overnight oximetry test that showed desats... then off to the sleep specialist and the rest is history. I am a year into it now.... love my machine and mask!

You definitely need to do some fine tuning to get your therapy optimized. Those with your same machine/mask can guide you with that. Software is available for you to monitor and tweak your settings to get the best possible results.

Good luck.... and keep up posted on your progress.

[Kody]

Glad to hear your story is turning into such a positive outcome. You have come a long way, luckily your Boss made the connection. My Boss also noticed that something was not right with me. I was making amateur mistakes, and having a hard time remembering details from a day or two before. He suggested I start taking Vitamin B to improve my memory! Luckily during a routine physical my Doctor picked right up on the symptoms when I was explaining all this constant exhaustion I felt. Turns out HE has Sleep Apnea which speed up the diagnosis for me.

Good Luck and keep at it, as my Doctor pointed out to me, getting treatment for this is a real life changer.

[nichola]

Hi all!

My boss has several family members with sleep apnea which is why she picked up the signs. I have thanked her, though not with flowers. Me doing a better job should be as good thank you. I have been able to take on extra clients onto my case load since ive been on CPAP.

Things arent perfect yet. I woke up 45 minutes ago after only 3 hours with a mask leak I couldnt get right so im up and typing away. But it is sooooo much better than before

[DoriC]

Welcome Nicola! Your story is inspiring and will no doubt help many who are struggling! I hope you have the software to monitor your data and leaks to help get your AHI down <5. Your mention of wearing makeup again brought me to tears but happy ones.

[Pugsy]

Congratulations and welcome to the forum.

I see you are using a borrowed M series machine. The M Series APAP with CFlex was my first machine when I started.
It does offer full data and there is software available that will work with it. Only drawback is that it needs a special card reader..about $40. Are you going to be using this machine short term or long term? There is minimal data available on the LCD screen 7/30 days averages of AHI, pressure and leaks.
Do you wish to try to get more data now or are you wanting to wait till you get a newer model machine?

Do you have or want to have the Provider/clinical manual for this machine?

[nichola]

No software yet but my DME lets me come in weekly and print off my data so thats fine. I will get software when I buy a machine

I have the provider insturactions to get into the clinical menu and am adjusting that myself now so we can get the optimal pressures. (im slowly brging the bottom pressure up in auto mode as my average 90% pressures are 19). Doing this slooowly so a) i get used to it and b) i can watch the data.

Im looking to buy a F&P icon AUTO. Riught now im umming about buying from my DME at a considerable markup (I live in Australia and CPAPs tend to be 3 times the price here) or buying online and risking no warranty. My DME is willing to negotiate a deal and get me a better price than standard... but i suspect im still looking at close to double the cost

[Emilia]

You might want to rethink the ICON as getting the software for it is almost impossible. We have some folks here who have that machine, and a very few of them were able to get their hands on the software, but generally, it is not available.

[nichola]

In Australia the software is actually very easy to get.. its $40 from a number of online sites or from my DME

For some reason Americans do seem to have issues getting a copy though

[DoriC]

Your 90% pressure =19 cms is getting pretty near the max which is 20cms. There are other models that have higher max settings which I'm not familiar with. I'm sure someone here will confirm that. Are your leaks under control? Large leaks can raise the pressure to compensate.