Tired and Getting Worse UPDATE

[Muse-Inc]

I am so tired and so frustrated, I gotta vent. Gotta understand this is a challenging wk for me: not only am I having events that wake me up multiple times at night, my desats are making my systolic pressure rise so I'm back on my ARB and it makes me even more muddle-headed than I already am from interrupted sleep but also I am driving my legally-blind buddy to doc appts last wk, twice this wk, and again tomorrow as well as do my job search and logging my efforts. I feel rotten and I'm irritable, moody, self-centered, impatient, and generally turning into a witch again

Sleep doc's insurance gal hasn't even called my insurance re my request for an APAP tho he was gonna send a strong recommendaton letter to allow me to get an APAP. I gotta followup and find out what is going on, more strain on my limited patience right now.

I get the Hybrid mask yesterday (the one my mom ordered for me 'cause the DME wanted $301 up front BEFORE they'd even order) and was so excited....the stop to my leaks that cause the desats that result in these events)! After watching the DVD on fitting and 90 mins of fiddling last night, I ended up in tears of frustration (I so want this to work) 'cause I couldn't maskup without leaks and I end up sleeping with my current mask and having events that woke me up repeatedly: 8 hrs of sleep is more like 8 hrs of nothing. This is so like my pre-CPAP sleep. Makes me wanna cry right now just typing this...next month will see 2 yrs of CPAP therapy and now with my wt loss, I have leaks that undo all the good effects I've experienced (I can't deny the stress of being laidoff plays into this along with my dwindling savings and worry about insurablity when State's mini-COBRA runs out this yr).

Tomorrow I have an appt with my sleep doc's tech to help me figure out how to fit the Hybrid. If we can't fit it, she'll order the new Respironic's FullLife mask...when my insurance allows me another mask. Is it any wonder I want the greedy, power hungry insurance, pharma, and DME execs out of our medical care

I can't make this work anymore...I am so tired and frustrated.

[rosiefrosie]

I'm so sorry! Wish there was something I could do to make you feel better. All I can say is hang in there and hopefully you can get a mask that will work for you. You can make this work for you. It's been over 3 years for me and now finally with the right machine and pressure I am staring to feel human again, almost like my old self. Now I just need to get my mask fine tuned because of the higher pressure or maybe a full fase mask when my insurance allows it.

[SaltLakeJan]

HI MuseInc

When I first noticed your posts, I saw the date you joined and assumed you were new to sleep apnea treatment.
When I read you have been in treatment for two years - no wonder you are frustrated. Not only is your treatment not working, you are severely sleep deprived. I suspect you are a person who is is reliable & conscientious in all things, & pushing yourself hard to get everything done that you think you should. (driving the person to appointments)

I recall you writing ResMed about the software.

Try to give yourself a break when you are so desperate for a good night sleep. I don't know your circumstances so I can't offer suggestions. Sleep Apnea, your job, the mask problems - you have had more than your share.

You said you had lost weight - that is a positive for you. I hope all things improve for you.

Jan

[jdm2857]

Musey --

When you're getting ready for sleep is the worst time to try to adjust to a new mask. Even though you feel sleepy all the time, bedtime is not a good time to undertake a tedious and frustrating task.

I know you're going to see the Tech tomorrow, and s/he may have just the tip you need for success. But either way, lay down and fiddle with the mask earlier in the day.

And try to relax a bit -- you've found one mask that worked for two years; you'll find one that works now.

Keep us posted.

[sleepyprm]

Hi Muse,,,, I have seen your posts and can always tell when it's you before I see the name. You have offered much hope and encouragement to others on this forum, and I appreciate it so much. You can do this, I know you can. It's so hard when we're sleep-deprived and everything feels crappy, but i hope you can receive what you have been giving, 'cause it's your turn to receive now. You have come a long way,,, keep at it, I know you will work it out. I wish I had specific detailed mask and other suggestions, but I'm pretty new to all these options so all I can say is HANG IN THERE and let us know how you're doing.

[robertmarilyn]

I can't make this work anymore...I am so tired and frustrated.

I know how it is and I'm sorry you are going through all of this. In my case, I think that after things not improving at all since I started CPAP testing in Feb, that in the last two weeks I am finally noticing that I feel better. It has taken a LOT of tests and trial and error and finding out that certain meds do work and don't work. But I do finally see the light at the end of the tunnel. Hope things get better for you too.
mar

[mdintx]

Rooster posted some fitting recommendations for the Hybrid:

viewtopic.php?t=14422&highlight=

I hope that helps. Going through ups and downs as well, you have my deepest sympathy.

[Muse-Inc]

Thanks all for the words of encouragement. It's just so frustrating to go for so long with successful if somewhat slow recovery and then all this back sliding that I can't stop . In my excitment over getting the mask, I watched the video and picked out what seemed to be the right size mouthpiece and pillows, hooked it all up, adjusted the straps, did not freak out from the bulk on my face, seemed to be able to breathe OK...I thought I was set, so i washed everything and let it air dry. At bedtime, I connected my hose and leaks galore, fiddled with pillows position in the mouthpiece, pushed 'em with fingers to see if that'd fix 'em (a la some elastic), I turned the pillows around so the pillow connector was on the outside...better...lie down..nope, high pitched leak somewhere, live with it...hard to exhale and it blows on my lips and the pillows have rainout (rainout in the pillows? ), I tightened here, I loosened there, I switched pillow size up & then down (disappeared up my nose...oops, wrong size), I switched to the next larger mouthpiece, now leaking around mouthpiece (now I understand what y'all meant by mask farts...it really is what they sound like ), re-tried both sets of pillows in a shorter height, tightened then loosened everything, went back to the first configuration...still leaking badly...then I gave up. Sitting there staring at the mask, I felt so bad (why do we magnify everything when we feel horrid?) that I started crying because I couldn't figure out how to fit the mask (everything feels too overwhelming). Tried the large pillows on my OptiLife and they were a tighter fit but I still ended up leaking thru lips and having events.

I keep reminding myself that:

• I did this once and I can do it again.

• This mask and leak issue will not get the better of me, I will find at least one mask that works for my current face & airways shape.

• I will again wake up feeling alive, alert, awake, and enthusiastic....or whatever that camp song says.

• I will lose the rest of the excess pounds and as my face/airways change shape from wt loss if I go thru this again I can change pressures and masks.

• Setbacks are not failures, merely pauses in the process.

• My systolic pressure and over-production of red blood cells will drop and I will be able to drop meds.

• I have lost 52#s! I have accomplished what one doc said I wasn't possible <low carb works you dummy>

• I actually enjoy my long, slow exercise sessions...my hatred of exercise was because I tried hard& fast and that doesn't work for...all it makes me is exhausted and hungry enough to eat everything in sight.

• As bad as I feel now I am no where near where the hellish state I used to live.

• My sleep doc and cardiologist think the apnea and its sidekicks will all go away after I lose the excess wt.

And, most of all, I have friends who understand...thanks all! It means a lot.

[kteague]

I always thought the look on the face of the cat in your avatar is bemused, but maybe that look is actually crazed - hard to tell the difference sometimes. I know things can be complicated, but daggone, sometimes I feel like screaming, "C'mon docs, this isn't rocket science - do something!" What would happen if you said to your doctor, "I can't keep on like this. I need answers and I need solutions, and I need them soon."?

Like Jan, I hope you can allow yourself some leniency while you resolve this. There's no shame in saying, "At this time I can't do all I once did." At my worst point I kept pushing and pushing myself to live at the same level of performance and activity, and did myself a grave injustice. I think forcing myself to give what I didn't have to spare in energy hastened my depletion and resultant crash. Just saying, be kind to yourself.

Let us know how your visit to fit the Hybrid goes.

Kathy

[Muse-Inc]

..the look on the face of the cat in your avatar is bemused, but maybe that look is actually crazed - hard to tell the difference sometimes....

Agree! I think that's why I love it, it fits depending on where I am at any given moment in time.. bemused or crazed

...What would happen if you said to your doctor, "I can't keep on like this. I need answers and I need solutions, and I need them soon."?

I'm about to do just that if we can't get the Hybrid to fit properly tomorrow.

...hope you can allow yourself some leniency while you resolve this. There's no shame in saying, "At this time I can't do all I once did." At my worst point I kept pushing and pushing myself to live at the same level of performance and activity, and did myself a grave injustice. I think forcing myself to give what I didn't have to spare in energy hastened my depletion and resultant crash. Just saying, be kind to yourself.

I think that's part of my challenge. Hard enough to feel helpless re the job market, but to start having events that wake me up again...I used to sleep 8 hrs without waking & wake feeing great...I refuse to accept these events, there has to be a way to make them go away...it just seems that I can't make that happen. Maybe it's the overwhelming sense that I am helpless to effect positive change in my life that is so distressing...maybe, has the feel of 'rightness'...yeah, that's probably it. Being kind to me right now makes me tear up, it's just sooo hard when so much in my life seems to be going in the wrong direction, ya know?

Thanks Kathy!

[WearyOne]

Hi Muse! It can be a long, irritating, frustrating fight getting a mask that works. I can't even remember how many I threw across the room in utter frustration at 2 a.m. many nights.

What is your pressure? I'm sure you've said it somewhere, and I'm too lazy to look! LOL High pressures aren't supposed to work well with pillow-type masks. Also, where is the Hybrid leaking. Many here have cut the chin flap off the Hybrid and get a much better fit. (I don't know about the other folks who have done it, but for me, I think it works better without it because those extra chins I have don't work well with that chin flap! )

Even though the Hybrid has turned out to be the best mask ever for me, it took a while to get there, and there are still night it leaks where the night before it didn't and I haven't changed a thing.

And I can definitely agree about so many things in life seeming to go in the wrong direction!!

Sweet Dreams! (Somebody needs to make a smiley with a mask!)

Pam

[drj130]

Muse,

You've given me some great advise on my issues, I can never thank you enough for the support and the help that you've given me... as well as putting up with all my weird / strange questions. It's only because of you and others here that have made me look into this issue so deeply that I'm also starting to think that the local supplier here is taking advantage of the Army and over charging on CPAP equipment (that will be a post later once I've more information).

Best I can say is this, take a step back, a deep breath, relax, and then once you've collected yourself, tackle it head on like you've done before.

I wish you luck and thank you for your support.

David

[Muse-Inc]

OK, visted with the sleep doc's CPAP tech today and the first Hybrid mask configuration I tried is the best one. She tightened the head strap and slightly tightened the neck strap and fiddled with the pillow sizes and angle to more align with my nares. I still have a small leak at the very tip of my nose; however, on the way home, I bought some hair scrunchies (covered elastic used to hold ponytails) and 2 looped together with the outside loop of each inside each top strap then put the looped together 'knot' outside the top flare of the pillows...tada, success, it eliminates the leak, even lieing down for a quick check (I think this will work when I sleep, I don't more around when asleep). The air enters and blows directly on my mouth which feels odd; I'll need a thicker layer of lip balm to prevent dried out lips overnight. If I relax my lips, it's "chipmunk cheeks!"...nice thing is that before I could even think about it, my brain immediately closed my lips...so I think this is gonna take care of the lip leak my brain works really, really well given good sleep . Now we see how well my touchy skin handles the silicon seal...I can always try the light coating of milk of magnesia tip I read here. Overall, I feel as if I can deal with this more complex mask. I may still end up making my own headgear as this one is really designed for a larger head than mine (when I was in Civil Air Patrol as a teenager, the AF had to special order hats for my small head ). Will see how I do over the next week or so with the mask. Think I might need to pad the straps to eliminate marks...will know tomorrow morning...tra la tra le...or leave 'em and claim to be into bondage if anyone stares

EDIT: I forgot, I also got rainout in the pillows and no comments about hot air please So am gonna turn humidifer to "1" and see how it goes, might just need passover in the summer. This is all so different from my OptiLife.

Using this mask makes it even more imperative that I get an APAP; despite with my reduced pressure, it's a real challenge breathing out against constant pressure. I can feel the extra effort in my lower ribcage which had become really sore (on my CPAP) before the APAP loaner-data collection which determined I need less pressure in my slimmer body ...another item to add to my list of reasons for an APAP when I talk to my insurance company. The gal who files insurance said my insurance company will reject the request because it's not been 5 years since I got my CPAP flow generator, this being the standard answer for this company; their reasoning is that standard therapy for apnea is simple CPAP. So, the ball's in my court to pursue this.

I am entertaining various approaches to dealing with this situation...suggestions welcome.

[jdm2857]

If you still have your tube of Lansinoh, a little bit extra at the tip of your nares might help get a seal there.

[Muse-Inc]

If you still have your tube of Lansinoh, a little bit extra at the tip of your nares might help get a seal there.

Cool...thanks! Forgot about that goo