Anxious post-second sleep study

[Wantok]

I posted a while ago that my first sleep study showed no apnea on my side, so I was trying side sleeping and other things. It turned out that I also was NOT having any REM on my side during the sleep study, although I did notice I was dreaming during the last month on my side.

Regardless we went forward to the second sleep study and it was really horrible--one of the scarier nights of my life, despite the fact that the technician said it was a great success. I guess it was a great success for her because I slept with the help of 5 mg valium (one of my initial goals of this whole thing has been to get off of valium), but I felt like I was suffocating, I got a sore throat, stomach ache, headache. (An explanation of the "suffocation": the nose mask didn't make me feel terribly claustrophic when it was put on; it was when the pressure was going.) I felt like crying it was so awful. Increasing valium use isn't a way to get through this!

I was using only a nose mask and started mouth breathing, so with the doctor's approval, she taped my mouth and then my mouth would fill up with air and then empty (??) several times which was unpleasant. I go back in a week to get whatever contraption the doctor decides upon but the reasons I am feeling so desperate are:
1. what happened during the study (this is success? and I am going to somehow get used to this?)
2. I have to do this and succeed somehow (I have BP problems, cognitive problems and I am praying this will help--of course on top of being a lousy sleeper and the fatigue, wasted life that goes with that).
3. I have to make it through the Medicare guidelines (I don't understand: do I get a machine and then, somehow, sink or swim, have to use it 4 hours a night, etc. a month?? I can't see this happening.)
4. I also just got fecal incontinence, so this makes me feel even more out of control. (And this follows a litany of other health issues that keep me going to doctors continuously.)
I am normal weight and exercise regularly. People even comment about how healthy I look!
5. Last but not least, I can't figure out how to make my poor husband not be dragged through this whole miserable process I am anticipating, after he has had to live with someone who is having non-stop medical issues.
Finally, since valium increases apnea, I am fearing the pressure they will suggest will be too high. Anyway, I look forward to any comforting ideas. I know I am freaking out and haven't even started, but it is all complicated by my fears about cognition/BP, feeling up against the wall, and this history of non-stop medical issues that makes me sort of have a PTSD response...

Wantok

[LSAT]

Your problem is the "freaking out". You haven't gotten the results of your sleep study, you haven't got a machine or mask yet, you haven't been told what you pressure will be...but you are panicking. Relax until you have everyting explained to you. The main ingredient to being successful with CPAP is attitude. Your attitude should be that if you need a CPAP it will make your life better.

[pootsie]

I am new to all this, but the techs at my second study were very kind and supportive and I think it helped. They had me practice breathing with the machine before trying to sleep. I think it helped me adjust very well.

There is nothing so effective as a good deep breath (or series of them) to calm the nerves. I did some deep breathing with the mask on and it went from "ew-get-this-off-my-face" to "I-can-handle-this" in no time at all.

[sawinglogz]

I recommend getting fitted for a full-face or hybrid (mouth + nasal pillows) mask if you're occasionally mouth-breathing.

I found that my nose stops up a few times at night (and then clears), especially when I first lie down. I had tried a nasal mask at my titration study, but found I eventually had to mouth breathe to get extra air every once in a while. After an hour of gasping, I switched to a full face mask, and it was MUCH better.

I'd like some day to be able to switch to nasal mask, just to have less stuff strapped to my face, but until I adjust and see what my nose does under pressure, I'm going to stick with the full face mask.

[grapeshly]

Let's just see what you get prescribed and we will work with you to resolve the issues. For example, it's possible that your sore throat could've been due to lack of humidification, and your throat getting dried out. If so, a heated hose and humidifier will help that. You headache could've been from stress and straps, or the combination of those. People here can give you a lot of advice on how to alleviate both those conditions. And that suffocating feeling could have been from a setting that was too low, or way too high. (Too low, and the mask is just in the way of getting enough air. Too high, and you might feel like you're trying to breathe against a wind, plus you may not be able to breathe out against the pressure.)

I agree that it's hard to see how this sleep study could be defined as successful, unless they meant that they were able to arrive at a definitive range for the settings. Or perhaps they were acting positive and cheerful so as not to scare you (and if so, they failed miserably).

We can help you work through all of these potential problems. One key thing is to get a full data capable machine. And also the humidifier and heated hose option. Even if those turn out to be not necessary, it's better to have them and not need them than it is to need them and not have them.

Relax. You have friends here, and people who have struggled with the same issues and worked through them.

[Janknitz]

There's wonderful help for you here, but only if you want it badly enough to put up with a difficult adjustment it sounds like you're going to have. I'm here to tell you it's worth it for all the problems you listed, BUT only if you feel you are worth the struggle to get there.

Start by reading up so that you get the best possible equipment. Start with my blog, What you need to know BEFORE you meet your DME. Read the wiki above, and read the threads.

And find a simple relaxation exercise to practice three times daily. (Here's one: sit in a quiet place, comfortable position. Close your eyes. Breathe in slowly while you count to five. Now breathe out slowly while you count to five. Repeat. Focus on the counting, more than the breathing. Try this for five minutes, three times daily). You want to build a new skill that will help you when you need it, but it takes practice to get the benefit.

We CAN help but I hope you won't be one of those people who will waste a lot of time and energy telling us why every one of our suggestions won't work for you. Meet us halfway, and we will can help you get there.

[49er]

Hi Wantok,

Welcome!

Your attitude sounds fine to me as in my opinion, you are expressing normal concerns in adjusting to pap therapy. Since it sounds like you might be having trouble dealing with the pressure, would getting a bipap be an option since this would be more comfortable, particularly at a higher pressure? Because I don't have insurance, I am not familiar with the rules regarding what would enable you to get one but you might look into this.

Agree with the recommendation to look into a full face mask or hybrid.

Hang in there.

49er

I posted a while ago that my first sleep study showed no apnea on my side, so I was trying side sleeping and other things. It turned out that I also was NOT having any REM on my side during the sleep study, although I did notice I was dreaming during the last month on my side.

Regardless we went forward to the second sleep study and it was really horrible--one of the scarier nights of my life, despite the fact that the technician said it was a great success. I guess it was a great success for her because I slept with the help of 5 mg valium (one of my initial goals of this whole thing has been to get off of valium), but I felt like I was suffocating, I got a sore throat, stomach ache, headache. (An explanation of the "suffocation": the nose mask didn't make me feel terribly claustrophic when it was put on; it was when the pressure was going.) I felt like crying it was so awful. Increasing valium use isn't a way to get through this!

I was using only a nose mask and started mouth breathing, so with the doctor's approval, she taped my mouth and then my mouth would fill up with air and then empty (??) several times which was unpleasant. I go back in a week to get whatever contraption the doctor decides upon but the reasons I am feeling so desperate are:
1. what happened during the study (this is success? and I am going to somehow get used to this?)
2. I have to do this and succeed somehow (I have BP problems, cognitive problems and I am praying this will help--of course on top of being a lousy sleeper and the fatigue, wasted life that goes with that).
3. I have to make it through the Medicare guidelines (I don't understand: do I get a machine and then, somehow, sink or swim, have to use it 4 hours a night, etc. a month?? I can't see this happening.)
4. I also just got fecal incontinence, so this makes me feel even more out of control. (And this follows a litany of other health issues that keep me going to doctors continuously.)
I am normal weight and exercise regularly. People even comment about how healthy I look!
5. Last but not least, I can't figure out how to make my poor husband not be dragged through this whole miserable process I am anticipating, after he has had to live with someone who is having non-stop medical issues.
Finally, since valium increases apnea, I am fearing the pressure they will suggest will be too high. Anyway, I look forward to any comforting ideas. I know I am freaking out and haven't even started, but it is all complicated by my fears about cognition/BP, feeling up against the wall, and this history of non-stop medical issues that makes me sort of have a PTSD response...

Wantok

[Wantok]

Thanks so much to all of you for your comments. I am off to see the doctor tomorrow to get my sleep study report and talk machines. I did my homework, as suggested, and feel much better. I am probably too optimistic now, but I think an APAP and a humidifier with a full mask will be a good place to start to address the issues of my unpleasant sleep study problems. It was heartening to read that others have had nightmarish beginnings, as well as be forewarned to expect a ton of insurance battles. I am also anticipating a process that will take some time, but I am especially motivated because of my cognitive decline and the hope that that can be stopped (or maybe even reversed some). Many thanks again. I would not make this without this support, I am sure.

[RandyJ]

I can assure you that your experience with cpap during the titration study can be different than what you will experience at home.

In my case, they started me with a nasal mask, but I couldn't breathe through my nose enough due to congestion so several minutes later they switched it for a full face mask. Then, beginning the titration, they started me at what must have been 4 cm pressure and I thought I was going to suffocate. I ripped off the mask. Finally, the tech understood and started my titration at 8 cm, which actually felt like enough air that I wouldn't panic. Somehow I finally fell asleep with the huge full face mask on my face, and slept (barely) long enough for the titration phase.

A few weeks later, when I got my own machine, it was a whole different experience. The prescription was for 14 cm pressure, so when I put the mask on I had plenty of air, and went right to sleep on that first night.

As others have said, take this one step at a time and don't let yourself get anxious. And read Janknitz's blog so you don't get stuck with a brick.