My Story - Hopefully Helpful to Nervous Newbies!

[Backtocpap]

Hi, I'm a 54 year old Mom of a 22 year old and 13 year old son. Since I was 4, my family would wake me up as I would stop breathing. In 1963, no one heard of sleep apnea, I was considered to have night terrors. Flash forward to my husband elbowing me awake many times each night, I would go to a different room so he could sleep, I would wake up making "animal" noises or noises like a plane was crashing... not typical snoring. After a diagnosis of lupus in my 20's I thought my feeling lousy was entirely due to that, my rheumatologist sent me to a neurologist at University Hospitals in Cleveland for a new fangled thing called a sleep study - this was early '80's. I was diagnosed with severe sleep apnea and told most of my events we of the central kind but that there was this new therapy called CPap to try. I was sent home with a maching that was a cross between a Hoover vacuum in reverse and a leaf blower. I don't recall what my pressure was set at but it was before the days of a humidifier and the mask was as subtle as a gas mask. I gave it a few weeks, and gave up. Along came kids and there was no way with getting up at night to take care of them I would have even considered trying again.

I always awoke fuzzy headed, I have had heart palpitations and lots of lack of energy for everyday tasks my whole life. Even still, I just thought that was my normal.

January of this year, I awoke at 6:30 am very aware of my apnea and with my heart flopping out of my chest and a very erratic pulse of 160-220. I have helped enough elderly relatives with their doctor's visits to know I was having atrial fibrillation. I hoped it would stop but it didn't and my husband called 911, after an overnight hospital stay and meds thankfully the a-fib converted. I was told to get a new sleep study asap, which I did and found my oxygen was dipping to 68 percent. I was told anything under 90 can trigger afib or worse....who'd of thought it is dangerous to not have oxygen while sleeping! (I am mocking my own reluctance to address this critical problem). Long story short, I am using a Resmed S9 Elite with a fixed pressure of 7 and mostly use either a full face mask or the Mirage FX nasal mask. I have the heated humidifier and tubing.

I am so happy to say I love this machine, I love the reports and feedback, I feel wonderful and I think I might not die in my sleep anytime soon. It took a small learning curve and playing with several kinds of masks to arrive at my comfort zone, but I can tell everyone - I am so happy I had my "wakeup call" of afib and not a more serious heart attack or stroke as my catalyst to get back to cpap and realize how very far the treatment has come and how much of a difference it can make in your life.

Don't give up - it is so worth it....I was lucky to go so long with no treatment - no excuses now!

Just want to also add that a MAJOR factor in knowing just what machine to get and what to ask and find out about was THIS FORUM! This forum is full of very wonderful, knowledgeable contributors who make all the difference in compliance and comfort level with this treatment. Thanks to all of you!

[Stormynights]

Thank you for the story. I am glad it had a happy new beginning.

[Sheriff Buford]

Thanks for your note! It's a breath of fresh air!!

Sheriff

[ellen1159]

Your story resonates with me because during my sleep study my oxygen dipped down to 69% at it lowest, just before I woke up. I've had my machine since May 6th but I've yet to be able to sleep more than an hour with it because I just can't get comfortable. Might be the high pressures drying out my mouth and throat, might be that I was suppine when I normally sleep on my side. But I'm scared to death that I'm going to end up a statistic because I'm so phobic and anxious about using this machine. I'm great when I'm awake and watching tv, but as soonas I lie down and try to sleep, forget it. I fidget, my mouth opens and air comes out, I feel like I'm choking from the dryness, the headgear bothers the side of my head, I can't get the pillows comfortable...it's like whack-a-mole...one problem solved, another pops up.

I'm sick with worry about falling asleep and not waking up. I'm usually able to do whatever I set my mind to do but I can'tseem to find the magic formula for this. I'm going to try to nap in a recliner this afternoon after reading (thats when I notice how tired I am).

I've got a great machine, recently had the exhale pressure (forget what it's called, maybe c-flex) adjusted to make exhaling more comfortable, like my mask. I've been using it wihout the humidifier since the weather turned warm but perhaps it would help the throat and mouth dryness. I'm also waiting for delviery of those adhesive chin up strips to helpkeep my mouth closed.

[Bill44133]

Hello Fellow Clevelander. Thank You for sharing your story. I did my Sleep Study through the Cleveland Clinic.
I had my Sleep Study on April 22 and starting with bilevel PAP therapy on April 30 of this year.
During my study my oxygen level dropped to 69% and spent 47.4% of the sleep time below 90%.
My AHI was at 140.0. This is scarey stuff. Not to mention that I felt like I was dying.

When I tell people of my condition I am amazed how many people I know who are sleeping with these machines and I had no idea.
Finding this awesome website filled with all this information is just incrediable.

While sleeping with the mask on every night and making sure I have my mask and filter cleaned before bed time is a royal pain.
I love the way it makes me feel in the morning.

[NeedHelp2]

Awesome story and I'm so happy you are doing so much better!

I'm still in the educational phase and I'm curious why you chose a cpap over an apap.

[chunkyfrog]

The Elite is an excellent, full data machine. I used mine for the first 9 months of therapy.
Some doctors refuse to prescribe an APAP, (probably are not aware they can be run in cpap mode,
and do not give a hoot if patient is forced to undergo additional, unnecessary, expensive, sleep studies)

[mgaggie]

Some of us don't have a choice with what machine we get. I went through a program to help low income earners, and you are not given a choice. Oh sorry you are the choice is CPAP or nothing

[Backtocpap]

Hi Everyone who commented, thanks so much for the support... you are all very helpful and I feel you can never have too much information in order to make something work.

In answer to Needhelp2....I didn't have a choice to choose the Apap or Cpap... but when my doctor suggested the Resmed S9 Elite with Cflex, I fought him and asked for an APAP version instead, his answer to me was that he would rather I try to fixed Cpap with autoflex (I was set at 7 with exhale at 4 initially). The reason was that the APAP can cycle up and down and he feels it could wake me up in its moving up and down in ranges. I have never tried an Auto machine and I was reluctant to try the fixed machine because of all the wonderful things people on this forum seem to say about their Auto. So far, I have to say that so far, so good. I recently upped my pressure to 8 with exhale of 5 as my AHI's run from 2 to around 8 or 9 some nights. I will see if the upped pressure helps (this was advised by my doctor at my six month follow up).

In answer to Ellen1159..... Don't be afraid! I was also very uncomfortable initially, when I had my two sleep studies ( the first to figure out the severity of the sleep apnea, the second to figure out my pressure needs) I was miserable. The study to calibrate the pressure was done on a night that it was 6 degrees outside, the room I was in was probably only about 60 degrees, I was FREEZING and to make matters worse in the morning the techs came in to realize they never turned on the heated humidifier. I left so very unrested and in pain from the freezing cold, incredibly dry air forced up my nose all night I really did not ever think I could use this machine. It took another few weeks to get the doctor's prescription and the S9 Elite with heated tubing and heated humidifier were finally delivered...unfortunately, I had a case of bronchitis so bad I could not breath out of my nose at all and was coughing all night. My first couple of weeks were using a Fisher Paycal full face mask. The reason I chose this full face mask was that it goes under your chin which kept me from popping the seal when I coughed. I had to also change my firm pillow for a softer one to minimize discomfort from the straps and mask. I got so used to the full face mask that I hardly tried the nasal mask that I bought - the Mirage FX. The first few times I used the nasal mask my mouth would pop open and I would get no benefit from the mask and have a sore dry throat all the next day. I gave up and went back to the full face mask. Now I use the nasal mask and I generally sleep on my side on a softer pillow. I also have a small pillow that I wedge up under my chin and kind of hug the pillow and now my mouth does not pop open. I also set my humidifier at 75 degrees and I love the humidifier and heated tubing It makes all the difference in the world for me. I can't stress enough that you really have to try different masks and different pillows to finally get comfortable with the masks and headgear to find which is best of you.
Don't give up - you will be fine. I used to fear that I would rebreathe my own CO and pass out while sleeping, but that pressure keeps so much air going through the mask that that will not happen. Humorously, one night I got up to use the bathroom, put the mask back on, fell back asleep and slept another few hours, not realizing I never turned the machine back on - I didn't have a problem just breathing through the mask without any pressure! I didn't feel as great in the morning but I didn't die either!

Bill from Cleveland - yes, I've found the same thing! So many people use these and I think that many more can be helped by them if they follow through with the lengthy diagnosis and treatment. Unfortunately for me, I didn't take it seriously enough until I was forced to with the atrial fibrillation wake up call! Glad you are doing well!

Thanks to all of you again for your support!

[Pugsy]

EPR is the term for the exhale relief for the S9 machines.
Never hear of

fixed Cpap with autoflex

with a S9 machine.
and the EPR exhale relief only has 3 settings available...1, 2 and 3
there is no 5 available in the exhale relief...perhaps the 5 you are seeing is the humidifier setting?

Glad you finally got things work and and are having success finally. It's a testimony to others that are having problems that there are ways to overcome problems but we can't fix them without just plugging along and keeping on trying.

[gomer]

I WAS going to start a thread on how APAP has helped me....but ya beat me 2 it!

I have multiple health issues, hypertension, kidney disease, multiple sclerosis and 3 slightly damaged heart valves, to name a few. My sleep apnea was mild but qualified for treatment due to any one of my several other health issues.

It was my MS doc that suggested a sleep evaluation. My fam doc ordered the evaluation with a good local sleep doc. I had a full nite study done, followed by a titration study to find my needed pressures. When I went back for the titration study I packed sleeping pills and what-not, fearing I would never be able to fall asleep with a darth vader gas mask. To my total surprise I went out like a light even with the full face mask.

My first mask was near impossible to get adjusted well. I tried a MED instead of small mask and BINGO, it worked much better. It still took a bit of playing with this and that for a bit to get the whole thing working OK for me.

BOTTOM LINE... now after about 7months of APAP I am seeing great results, actually have been feeling the results for a few months now. HINT...it is not magic, its not instant results, but more than worth the time, patience and yes waiting for the effects of better sleep to make its appearance.

Many thanks to the many on here who not only encouraged me but helped me along the way....

Gomer