Excited yet Nervous Newbie

[geoffc]

Just wanted to say Hello,

I have recently been diagnosed with Sleep Apnea in addition to my other medical problems that I'm told some of which can be re-leaved(or made smaller problems) by solving my apnea problem.

I had my first Sleep study about 3 weeks ago which was about the worst night of my life, I got a a little more than 2 hours of sleep, during which time I had 1 full obstructive apnea, 75 hypopneas and 120 central apneas (Approximate, I don't have my study in front of me) and my AHI was 117. I'm 38 years old and Male.

This past weekend I had my tritration study on a bi-pap machine, which was about the 2nd worse night of my life, but I was told I got enough sleep early in the night to figure out where I needed to be, and right at the end of the night, I got an hour of sleep right at the end of the study to show eveything was working like it was supposed to be and to confirm my prescription.

I go back in 10 days to get my machine and get the follow up on the second night's 'Sleep'.

I'm excited because I'm hoping this truly will be the "life Changing" treatment that I need. I'm suffering from High Blood Pressure, insulin resistance, High Cholesterol, I'm over weight, lack of focus, I fall asleep while trying to do stuff with my daughter before she goes to bed, then have trouble sleeping all night long.

I'm nervous because I don't sleep real well if my environment changes, as is apparent from the 'success' during the sleep study. The rare occasion I go out of town for work, I try and go 1 day early because I will get little to no sleep the first night. I'm so sensitive that if I don't shave before bed, the scratchiness of my beard against the pillow will keep me awake.

Is there any advise y'all can share, questions I should ask at my next appointment, etc?

Thanks,

Geoff

[Roman Hokie]

Geoff, welcome from another newbie! Yeah, I've got my equipment listed in my sig, but that's what I'd LIKE to have - assuming the insurance and the timing and all that.

Anyway, the people here have been very helpful to me so far and I trust that someone or several someones will come alongside you. Here is a note about all the stuff I've learned in such a short time. The most important thing is that you, as a patient, have a right to learn as much as you can about the process and about your options. Otherwise, insurance and professionals can box you in - many times without knowing what you want.

Educate yourself. There's a bunch of stuff here to read on your own in addition to asking the questions here. I've only been here a week and don't have my equipment yet. With how my titration study went, I confess I'm very anxious to get moving forward. Keep an open mind about what's going on and how it's a process. Learning and applying.

Again, welcome.

[snipsnsnails]

Geoff, welcome! I just got here myself but I can really sympathize with being miserable at the sleep study. I had a split nitght study and only slept about an hour and a half out of nearly four hours with the mask on.

Study up before your next appointment. Read the lightbulb at the top of this forum and read sleep apnea 101 at cpap.com. Knowlege is power! I felt so much more confident going into my doctor and then seeking out what I know I need to get better after introducing myself here and getting so much good feed back and understanding from the membership here. Good luck!

[Janknitz]

Hi Geoff, Welcome!

Be prepared for some bad nights at first. If you are a sensitive sleeper, it's not going to be easy to get used to. It takes, patience, persistence, and a good dose of self education--that's the part we can help with. But it is totally worth it to feel better and to see the positive effects on your health. If you can get through that initial period, there is a great reward of peaceful, healthful sleep at the end.

The absolute biggest factor in CPAP success is finding a comfortable and well-fitting mask. Make certain your DME provider will work with you until you find that right mask. Ideally, the DME should have a liberal fitting policy and even give you several to try. Don't rule anything in or out until you've really tried in it, and perhaps slept with it for several days. Make sure whomever fits you gives you a chance to try your mask at full pressure and while lying down in your normal sleeping position.

Before you go for a mask fitting, think about how you sleep--positions, pillow, covers, etc. As you research diferent mask styles (cpap.com has some great tools for that), keep all of that in mind.

Be sure you understand the machine options and know which machines are data capable before you accept one from the DME. Because bipaps are more expensive and the profit margins are narrower, they may be more motivated to give you a downgraded machine. Read up on DME's and how to find one that won't play games with your money and care.

[geoffc]

Well, I'm back...more excited/a little less anxious, I want to thank everyone for the encouragement, I've been reading and learning for the past few weeks.

I got my bipap titration results last week, and got bad news, bi-pap wasn't what I was going to need, and I was going to have to do a 3rd night in the sleep lab on an ASV machine.

The good news is the doctor wanted it rushed, so I did my ASV titration Sunday night and my follow up this morning...

My AHI went from 117 to less than 40, with 1 central and 1 obstructive all night long, the rest were hypopneas, which I were almost gone by morning as they dialed in the machine. I was told the hypopneas should be minimal since the machine is now dialed in, and as my body gets used to it.

I left this morning with a Resmed VPAP Adapt SV machine, with an HumidAir 2i and a Mirage Quatro mask.

Tonight is my first night at home with this stuff.....wish me luck!

Geoff

[KatieW]

Welcome to the forum. Congratulations, sounds like you've got the machine that you need. You've already received some great advice.

I'll just add that many of us with with sleep apnea are sensitive sleepers...because our brain is hyper alert, waking us up to breathe. After 8 months, this is much improved, but still can be an issue for me. The usual sleep hygiene things like good mattress, head pillow that won't dislodge your mask, hose management, dark curtains, not eating 2 hours before sleep, etc. all help.

Best of luck to you.

[jweeks]

Geoff,

Welcome to the forum. xPAP was life-changing for me. I got so bad that I wasn't able to work any more, and I was still in full blown denial about it. In addition to being awake now, I find that my asthma is dramatically improved since starting on the machine. I also found that my blood pressure has dropped about 20 points, and I find that not only have I stopped gaining weight, but I have actually shed about a pound per month without even trying.

You commented about sleep environment. I find that to be extremely important. I use a Sleep Number bed, I have to have the right kind of pillows, I need the temperature just right, and I need to be tired. Basically, you want to remove any impediment that can possibly get in the way of a good night's sleep. For example, the heated humidity makes me warm, so I like to run with the A/C set at 70 degrees. Yes, that is a bit expensive. But a good night's sleep is more than worth the cost.

I wonder if you are a little nervous about the machine getting in the way of your sleep routine? If so, I'd suggest not worrying about it right now. There will be a little adjusting to do. But you will slowly get used to it. For me, using the machine is my normal way of sleeping now, and not having the machine would seem odd to me. In addition, feeling better is addictive.

Traveling is a little more hassle for me with CPAP, especially when going by air. The biggest issue for me is not having the right pillows. In fact, when I travel by car, take my own pillows with me, and at least have them in the car in case I need them. I also found that staying in a little better hotels, such as the Hampton Inn rather than Super 8 or Red Roof Inn helps in that I have a much better chance of getting a decent bed.

Good luck! Please post back when you find out what machine you are getting, and let us know about your first few nights.

-john-

[roncron]

Dear Geoff,

I might have something more useful to say tomorrow when I'm more awake, but for now I just want to welcome you and encourage you to hang in there. The adjustment to life with cpap isn't trivially easy, of course, but for me and many of us here it was not as bad as we expected, and, like many of us here, I've benefited tremendously from cpap. It's amazing how almost everything in life is better when you begin to really sleep, not just lay in bed waking up every 2 minutes to prevent suffocation, but really sleep for 6 or 7 hours straight. A few nights in a row of real sleep and many ailments begin to improve, mood and productivity begin to improve, appetite (for me and many others) is easier to control when I've had real sleep because I'm not being pulled toward food for the energy a sleepless night deprived me of.

Thanks largely to the people on this forum, my transition to cpap 3 years ago went very well. People here are kind and generous and supportive, even though you've never met them. But they've been through something like what you're going through. Others here helped them through it, now they're here to help you.

You will learn a ton here that you probably won't learn from your doctor or DME. For at least the first few weeks, it's worth spending a fair amount of time here, reading existing items and asking new questions when you can't find the answers in the many helpful posts and discussions already on this forum.

Good luck and see you back here again soon.

Sincerely,
Ron

[elena88]

Hi Jeff,
I think you found the golden key to tackle the rest of those health issues.. it is all related..
Osa/Csa can cause all sorts of havoc in your body...

Now, as everyone else said, there is an adjustment period for most people.. maybe now that you have the right machine, you will sleep
better, if not, it will come. Your poor body has been starved for oxygen for a long time, and it has become used to it, so it might take awhile
for it to adjust to actually getting back in the swing of a normal pattern.

Some folks can put their mask on and just fall straight to sleep, if you are not one of those people, be sure you have some distractions ready,
like tv, white noise machine, if your breathing sounds bug you, cds of the ocean, or rain, or whatever is your favorite..

and dont go changing a bunch of stuff in your routine or bedroom either... keep it all the same, as comfy as you can, and just add your machine,
your new breathing buddy, who is going to help you turn around that high bp, etc.. my bp went down to normal within a week or two of treatment.
Keep reading, and come here if things are skittering away from you, youll get plenty of help.. I did!



elena

[geoffc]

Ahhhhh!!!

So, it's day one....I made it almost 2 hours before I had to take the mask off and get out of bed.....

I did the mask fitting at the office this morning before bringing my new equipment home, without the machine running....last time I make that mistake....

Every time the machine ramps up the pressure, it leaks all over, so I start tightening up the straps so it won't leak, then my cheeks start to hurt and I can flex my neck up and down...

I was expecting a challenge, but.....

ideas?? Anyone??

[jdm2857]

I've never used the Quattro (or any FFM for that matter) but I recall that the advice usually given is that the straps should be a bit loose with the machine off. The seal inflates with the air pressure and needs space to expand. I think they said that the lower strap should be a bit tighter than the upper, although it could be the other way around. I'm responding because you're looking for advice at 2:30 am (et) and I don't know how many responses you'll get tonight.

[snipsnsnails]

Hi Geoff, I wear the quattro and got haircut yesterday that left me with having to refit my headgear...arrggghhhh. I had already forgotten how to do it after my initial experience a couple or three weeks ago. With the air off, adjust the straps till the mask is just flush with your face. Make sure the forehead adjustment is all the way out. Lay down in a sleeping position, turn on the machine to your set pressure. If the mask is leaking from down near the chin area tighten the lower straps one at the time till the leaks stop or start blowing out near your eyes. If it starts leaking near the eyes tighten the forehead adjustment til the leak stops. If the forehead adjustment ends up too tight start all over with the upper straps a bit tighter. It's a PIA but it's the best way I've found to get it without over tightening. Hope this helps! My pressure is auto 13-17 btw and I "normally" ,for a newb anyway, don't have much trouble with leaks.

PS. It helps to do this well before bedtime...it's a lot less frustrating if you aren't trying to go to sleep!