Just need encouragement

[MistRiver]

I'm newly diagnosed and waiting for my machine.  In a way this is a good thing because the DME was going to give me a straight basic Cpap but thanks to reading forums I asked for the Resmed Airsense Autoset 10 for her.  I do have to wait another week or two while they order it though.  In the meantime I'm alternating between hoping I will feel better and not wanting to get my hopes up that something will finally help.  I have endless exhaustion from the moment I wake up until I can finally fall asleep at night.  My brain is so crazy foggy I feel like I'm in a constant hung over state.  I feel so tired and foggy somedays it puts me right on the edge of panic.  Like I'm trapped and claustrophobicfor no reason at all.  It's been many years of bugging doctors, and many tests to rule out things things.  They always came back negative so the doctor would just give up and send me home with a shrug.  I've got several awful doctor stories.  Only the latest doctor even mentioned sleep being an issue.  I was actually partially shocked when my sleep study came back as apnea.  I was expecting another nope sorry not this either.  It's considered "mild" at 7 AHI but my oxygen got down to 82%.  I could swear during my sleep study I didn't actually fall asleep at all but they say I did.  My titration study has them prescribing me a 5cm for the machine when I get it.  That seems really low.  The titration study also says I kept my oxygen level up with the 5cm.  But it says it was "up" to a 92%.  Isn't that still low?  Mostly I just need encouragement that there is a chance this could make enormous difference to my life.  I have six kids, a few of which are special needs.  I am not at all coping right now.  The fog and exhaustion make it so very hard.

[mesenteria]

Hi.  5 cm of H2O is low, but it may be all you need, plus or minus, and maybe all you need now but not in a year or even six months.  This malady seems to have a mind of its own at times and can cause us to doubt our treatment, our machines, our diagnosis...especially if we continue to live with a lot of brain fog which many of us do even when the machine says we are being treated properly.

It happens that my pressure starts at 5 and ramps up to a steady 8 cm all night long because that's what worked for my during my confirmatory titration in the sleep lab the second night.  When my DME told me they thought I should just get the plain old CPAP, they didn't offer a 'brick', but offered the plain Jane upgrade called the Elite.  That model does have telemetry uploading of data to the RESMED servers, and I can see the results on my computer after 0800 local.  So, again, 5 is indeed low, but it's doable for some of us.

You may not have had many apnea episodes, and hence the mild rating you were assigned, but perhaps they endure a bit more than most and this results in your lowered O2 levels.  As you must know, your tissues, especially your brain, soak up all the available oxygen right smartly, so it doesn't take more than about 15 seconds for those levels to drop well below 90%. If your apneas were few and also of short duration, you would not have had those bad results given to you.  In my case I have a severe rating, but my lowest O2 was 87% for a short time, and only once during the assessment polysomnography.

Hang in there.  It'll all unfold just as it should, even if it goes in spurts.

[Walla Walla]

Your headed in the right direction by getting the AirSense for Her. Sleep studies and titrations are notorious for under reporting the problem. People usually don't sleep well with the equipment attached to them and that can lead to false data. The good news is with an Auto CPAP it will make adjustments through the night. Things you can do while your waiting for your machine is download sleepyhead and read up about it. It's the best software for tracking your treatment and it's free. Links are below. Also you'll want to by a SD card of at least 2BG so the AirSense can record detailed data of your sleep. You may also need to purchase an SD card reader if your computer doesn't have a card slot. One other thing is you can download the clinic manual for the AirSense in the private files section for members. This will explain how to adjust settings on the airsense which you will need and you progress in treatment. Once you you have your machine and have recorded some data you can upload it here and those here can offer advice to improve your settings. Good luck and Welcome to the Board.        

[MitchS]

Welcome to the forum, MistRiver. 

Even mild apnea can be vert disruptive to sleep patterns and can also cause serious health issues if left untreated. I have mild apnea also and can say that my cpap machine has become my best friend. Good job getting the machine of your choice. You picked a very good machine. 

A pressure of 5cm does sound low. You will probably end up with a higher pressure. I would suggest downloading SleepyHead and get it ready to start recording your data so you can post charts if you have questions. SleepyHead is the program of choice for monitoring sleep apnea. There are links to SleepyHead as well as instructions on organizing and posting your charts in my signature.

Finding the right mask is one of the hardest things about getting started with cpap therapy. I would start out with the ResMed P10 pillow mask. It is a very easy to use and comfortable nasal pillow mask. I am a mouth breather and still use the P10.

Remember that cpap therapy is a journey, not a destination. It takes time and a willingness to keep trying different things until you find what works for you. There will be ups and downs, but it will be worth it in the end. The fact you have joined this forum is a big plus. Most people who actively participate in the forum do well with their therapy. 

Good luck on your new journey.

[MVPinBoynton]

Welcome to the forum.  I have only been on CPAP for a week and like you joined this forum while waiting for my machine to be delivered.  You have already benefited by ordering the correct machine for you, rather than what they recommended.  Use this waiting time to read lots of threads and learn what others have been through and what they have done when issues arise.  Had I not found this board, I would have depended on resources that aren't particularly helpful.  Good luck on your journey!

[Sleeprider]

You're getting a great machine and will have great results. Be sure to request copies of the sleep study and titration if you did that. These studies cqn provide a lifetime of benefit, but too many people don't have a copy.

[OpalRose]

Hi MistRiver,
Welcome to Apnea Board!

Glad you found us.  You will receive a lot of help and support here as many of us have been in the same boat.  

Until your Cpap arrives, go ahead and request the Clinicians manual for your machine.
https://www.apneaboard.com/adjust-cpap-p...tup-manual

Also, if you haven’t done so already, download the #SleepyHead software.  This is a great tool and will help you take control of your therapy.

[MistRiver]

Thank you everyone who responded.  I just picked up my machine.  I ended up with a dreamwear pillow mask.  My prescription had me at 5cm but that setting felt very much like I wasn’t getting any air in. I think they call it feeling air starved. As a separate point,  I found it hard to breathe without EPR during my titration study.  My understanding is if I want to keep to the five my doctor prescribed but set it on auto in case I have more need for pressure than the sleep study picked I’d set it to 7-20 with en EPR of 2 so that in never drops below th 5cm prescribed.  Is that right?  I’d assume setting it to 7cm would help with that air starved feeling too.   Also, will I get in trouble with the doctor for changing my setting?  Do they’ve tend to even notice?  My doc is a ridiculous one and thinks the machine type doesn’t even matter at all  and patients don’t even need basic information about their therapy.  He just said I had apnea and needed a machine with no info at all.  He says the only thing that makes any difference at all is the mask.  So I doubt he’ll cooperate with me being in on my therapy.  Thanks.  : I’m actually itching to take a nap with it as per usual I’m dead tired.

Excuse any weird wording I’m typing on my phone and it does silly substitutions sometimes.

[MistRiver]

Oh I also forgot to ask.  The DME guy said any filtered water would work.  I have a water filter but it isn't reverse osmosis.  It does filter out a lot.  Would that work or do I need the distilled water?  Thanks.

[MistRiver]

I was playing with it and I definitely find 7 with an EPR of 2 much more tolerable.