Restless sleeper w/ few minor health issues new to CPAP

I had a home sleep study in early March and have moderate sleep apnea. I don't have the report with numbers. I have struggled with sleep past few years. I am always tired during the day. I toss and turn a lot at night. Downside to home sleep study was that I did not get evaluated for RLS. I don't feel like my legs are restless -- no pain or tingling in my legs. I just seem to sleep very lightly and have to switch positions a lot. CPAP machine is on order and will receive in about a week. ResMed AirSense 10 For Her. DME intially suggested ResMed AirSense 10 but I asked for the "For Her" version because it looks nicer. Small things like that matter to me. Also has algorithm for women. That's interesting to me, but I'm not super knowledgeable about gender and algorithms. I just like the color and the flowers.

I was first diagnosed with moderate sleep apnea 10 years ago. Had CPAP for about a year. Can't remember any issues with it other than taking some time to get used to mask and I hated chin strap (not convinced I need and this time around I will see...that darn chin strap was my nemesis). Did follow-up study. No sleep apnea. I stopped using machine about 9 years ago. Based on how I have slept and felt since then, I suspect I went a year or two with either no sleep apnea or very mild sleep apnea. If I am just 10 - 20 pounds over ideal weigh, it increases. First very detailed report from pulmonologist explained how my nose/throat anatomy factor in. The machines now are way different than what I had 10 years ago. I had a big machine with fixed pressure and can't remember any reports or anything like that.

I have anemia, though slowly getting that under control. Was severe. Now mild. I have supraventricular tachycardia (SVT). Have had SVT for 10 years, with three major (trips to ER) episodes and mild episodes. Recent major episode and increase in mild episodes means that I now have to take meds and may have surgery. Unsure at this point. I am not discounting the possibility that addressing sleep apnea and anemia may help SVT. In fact, all three can be related.

Some questions...

1. I didn't have titrate test. Is this normal to not have? Does home sleep study provide enough info?
2. The machine gathers data. Who reviews all of this data? I am guessing nobody specifically looks at my stuff unless it is outside of parameters. BTW, I don't have any issue with data being reviewed, I just don't know who does it. The doctor who ordered my sleep study is just my regular doctor. I am reading a lot here about SleepyHead and software which can do this.
3. Is it possible using CPAP will reduce my tossing and turning? This is my biggest concern. I want better sleep. I am tired of being tired.
4. My plan is to not use chin strap right away and then add it or try something else if I think I need. Back when I used CPAP 10 years ago, the chin strap was given to me by DME and he pretty much said everyone has/uses and necessary to prevent mouth breathing. Thoughts?

Not really a question but adding that I don't have a lot of support from my husband. I don't know if anyone else has a partner who is somewhat unsupportive. Did support improve?

Thanks for any help. I am reading a lot here. Even though I did CPAP a bit 10 years ago, I feel new to this and see how much I didn't know back then and still don't know. The more I read here, the more I am learning but also the more questions I seem to have.

Welcome to the forum...

I strongly recommend you take 15 minutes and review this youtube video it will help you understand what is going on with you. Hopefully it will answer some of your questions.
https://www.youtube.com/watch?v=-gie2dhqP2c

This video put the whole thing in perspective for me. I was able to show it to my family and friends to help them understand also.

I wish you well

Welcome, 12.

Do you have your machine yet? If not, read the Useful Links in my signature line at the bottom of this post to avoid some of the landmines in the process.

The A10 AutoSet for Her is an excellent CPAP machine. Grab it if you can. Many people have to fight with their DME to get that model. There are a few other machines that are on par with it, but none that are clearly better.

Home Sleep Test:

The home sleep test, done properly, with appropriate follow up via a good data capable CPAP machine like the A10 AutoSet is probably as good or better than the actual in-lab sleep tests most people get. While the in lab sleep test is better in theory, many people sleep badly or not at all in the sleep lab, and the home data from a good CPAP machine is good enough. Even if the CPAP data doesn't "solve" the problem it will spot the problem and let the doctor adjust your machine to fix it or tell him he needs to order an in-lab sleep test.

Who gets the data:

The machine sends data through the cell phone network to ResMed or some other medical company they work with. Your doctor, DME, and insurance may have access. In theory, no one else has access to your sleep data, although the big corporations are really awful at data security these days.

While it should be kept secure, your CPAP data is probably not that interesting to computer criminals. It tells when you're sleeping, and how well your therapy is working. Of more concern is your other personal data stored on medical companies' computers, but that happens whether you have a CPAP modem or not. The computer criminals are already stealing personal data directly from the insurance companies.

The SD card in the machine has much more data, and you can look at that yourself.

Tossing and turning:

There's a chance it will help, maybe not. It may take time and some tinkering, it may be an overnight miracle cure.

Be sure you place your CPAP machine such that you can't pull it off the table or turn it over by pulling on the hose. Tie the hose to your headboard with a cable tie, put the CPAP machine in a drawer, tie the machine down somehow, route the hose through an opening somewhere, etc. If you turn the machine over or pull it off the table, water may spill into the blower unit and ruin it.

Chin strap:

Some people need one, some don't. You CAN use a full face mask (FFM) that covers your nose and mouth, but I recommend you try to make a nasal mask work first.

If you learn to use SleepyHead, it will tell you whether or not you're leaking large amounts of air out of your mouth and you can see if you need a chin strap or a FFM.

Hubby:

Unfortunately, unsupportive spouses are common. Whenever he says something, clap your hand over his mouth our nose and hold it for 20 seconds or so. Repeat every few minutes. Ask how he likes it. It's particularly effective if you do it while he's sleeping.

There's a lot of scumbaggery in the medical field these days, including the CPAP/apnea field. However, sleep apnea is real, and I don't think they fake the diagnosis. There are so many real apneacs that they don't need to fake it. CPAP is THE best treatment, although they will try to screw you with a cheaper machine at the same price. Your A10 AutoSet for Her is a one of the best. The followup care is often abysmal, and you may need to take a big part in managing your own therapy.

Good luck. Stay in touch.

archangle wrote:Welcome, 12.

Do you have your machine yet? If not, read the Useful Links in my signature line at the bottom of this post to avoid some of the landmines in the process.

The A10 AutoSet for Her is an excellent CPAP machine. Grab it if you can. Many people have to fight with their DME to get that model. There are a few other machines that are on par with it, but none that are clearly better.
strap:

There's a lot of scumbaggery in the medical field these days, including the CPAP/apnea field. However, sleep apnea is real, and I don't think they fake the diagnosis. There are so many real apneacs that they don't need to fake it. CPAP is THE best treatment, although they will try to screw you with a cheaper machine at the same price. Your A10 AutoSet for Her is a one of the best. The followup care is often abysmal, and you may need to take a big part in managing your own therapy.

Thanks. Good info. I don't have the machine yet but it is on order. I am glad I looked around and read about machines. The DME person seemed surprised that I even knew she would be calling, much less that I had ideas about the machine. The machine originally suggested was the regular A10 AutoSet which also seems a good choice. But I know me -- and a smallish thing like how a machine looks matters. Of course, if I thought there was a machine with better features I would have considered it. My insurance covers the machine at 90% of cost. I will have to pay about $70 for machine, mask, etc. I do have a large deductible on insurance, but that was already met.

That pretty white and gray machine is awesome, and not just a pretty face.
I am using the Autoset For Her mode, which is more responsive, more comfortable,
and records a wee bit more data. You done good.

I got my CPAP machine on Thursday and a nuclear stress test on Friday that shows possible SVT. I believe they're connected and hope the CPAP machine will repair some damage I know that has been done to my heart from sleep apnea.

Twelve12 wrote: ...I toss and turn a lot at night. Downside to home sleep study was that I did not get evaluated for RLS. I don't feel like my legs are restless -- no pain or tingling in my legs. I just seem to sleep very lightly and have to switch positions a lot...
3. Is it possible using CPAP will reduce my tossing and turning? This is my biggest concern. I want better sleep. I am tired of being tired...
Not really a question but adding that I don't have a lot of support from my husband. I don't know if anyone else has a partner who is somewhat unsupportive. Did support improve?

Once you are adjusted to your treatment and know it is working as it should, if your sleep apnea is responsible for disrupting your sleep, you should start getting better sleep once your brain accepts that all these new sensations are safe and your new normal. If over time your sleep is still shallow and restless, you may want to consider if Periodic Limb Movement Disorder could be at play. Because the movements happen while asleep, it's common to not even be aware of them. For a long time all I knew was I kept changing positions. Didn't realize a limb movement precipitated each position change. Often the first to notice is the sleeping partner. Is your spouse ever awake while you sleep? It would be interesting to hear if they have observed any leg movements out of the ordinary. It's quite possible treating your sleep apnea will resolve your restless sleep. Often with obstructive apnea events one will instinctively move in the effort to resume breathing. A lab sleep study would have identified that. As to if your spouse will be more supportive over time, hard to say. It's an adjustment even for your spouse. When beginning treatment it's easy to be so consumed with the subject we wear those around us out talking about it. Find the balance between including him in this process and overload.

bucksnort wrote:I got my CPAP machine on Thursday and a nuclear stress test on Friday that shows possible SVT. I believe they're connected and hope the CPAP machine will repair some damage I know that has been done to my heart from sleep apnea.

I just came from appt from cardiologist and she said most definitely sleep apnea can trigger SVT. Right now I am taking a daily time released calcium channel blocker to keep SVT in check. She is going to give me a few months to get going with CPAP and then she will switch the calcium channel blocker from a daily time released version to a quick acting type which I will only take if I get an SVT unresponsive to vagal maneuvers. In most cases, vagal maneuvers stop the SVT but I sometimes have to go to ER. Adenosine is typical drug but last time I went, two doses didn't stop SVTs. An IV dose of the calcium channel blocker did stop it - so a fast acting dose is kind of a way to prevent me having to go to ER. I don't want to have to take a daily medicine my entire life -- and one what has some drug interactions and makes me feel lightheaded at times. I don't want to have heart ablation surgery if I can avoid it.

Twelve12 wrote: 1. I didn't have titrate test. Is this normal to not have? Does home sleep study provide enough info?

The home sleep study is enough to diagnose OSA. But not PLMD. As for no titration study: Some HMOs are now routinely using a test period on APAP instead of a formal titration study. Typically the machine is initially set wide open (4-20cm) and after a week or two the data is looked at and the formal prescription is decided upon based on the data. Usually the "fixed" pressure level is the 90% or 95% pressure level from the APAP data; if the patient is going to continue using APAP, the pressure range is usually tightened up so that the min pressure is 1-2 cm less than the 90%/95% pressure level and the max pressure is 1-2cm above the 95% pressure level.

2. The machine gathers data. Who reviews all of this data? I am guessing nobody specifically looks at my stuff unless it is outside of parameters. BTW, I don't have any issue with data being reviewed, I just don't know who does it. The doctor who ordered my sleep study is just my regular doctor. I am reading a lot here about SleepyHead and software which can do this.

The DME will review the compliance data since they need to show that to your insurance company in order to get paid for the machine. The DME may or may not look at any of the efficacy data or the leak data. And they may or may not share that data with your doctor. Your doctor will probably only look at whatever data you show him/her since s/he's your regular PCP. Your PCP probably will ask you if you're using the machine each time you see him/her for whatever reason.

It is worth getting SleepyHead and learning how to read your own data. It's not that hard. You can think of it this way: Diabetics are expected to monitor their blood sugar on a regular basis; folks with HBP are expected to monitor their blood pressure; and folks with OSA should be expected to monitor their AHI data when their machine records efficacy data. The Airsense A10 Autoset For Her records full efficacy data.

3. Is it possible using CPAP will reduce my tossing and turning? This is my biggest concern. I want better sleep. I am tired of being tired.

If there is no RLS and no PLMD, the CPAP may very well reduce your tossing and turning. It certainly reduced mine. A few folks even report that once they start on CPAP, they are moving around so little in bed that they wake up stiff from sleeping in one position all night long. (That problem usually straightens itself out over time.)

It is important, however, to have reasonable expectations: Most people do not feel substantially better after the first night or two on CPAP. For most people it takes a while to get used to sleeping with all this stuff on your face, and that can cause some real adjustment problems. But most people do start feeling better within a few weeks to a couple of months after starting CPAP.

If the tossing and turning does NOT decrease after being on CPAP OR if it increases, it's worth asking whether you can be referred for in in-lab sleep test to investigate whether PLMD or RLS is a significant problem.

4. My plan is to not use chin strap right away and then add it or try something else if I think I need. Back when I used CPAP 10 years ago, the chin strap was given to me by DME and he pretty much said everyone has/uses and necessary to prevent mouth breathing. Thoughts?

Most people do NOT need a chin strap. But for the folks who do, it can make it much easier to avoid using a full face mask.

If you mostly breathe through your nose during the day, it's worth trying a nasal mask or a nasal pillows mask without a chin strap. Then look at the leak data gathered by your machine. If the leaks are under control and they don't wake you up, no chin strap is needed.

Not really a question but adding that I don't have a lot of support from my husband. I don't know if anyone else has a partner who is somewhat unsupportive. Did support improve?

You have my sympathy. Without my husband's love and support during the first 2 years of PAPing, I would never have made it to long term compliance.

You might focus on the following things with trying to get your hubby to understand the need to support you in this:

1) If your tossing and turning wakes him up at night, then the CPAP may help you sleep more calmly and that may allow him to get more sleep.

2) If you snore (I did), the CPAP should eliminate the snoring, which should help him sleep more soundly.

3) The CPAP should help you (eventually) have more energy in the daytime. So you'll be more active and more willing to do things---including sex if you're not in the mood very often right now.

But all three of these things are long term benefits of PAPing. And you need his support in order to make this therapy work so that both of you can reap the benefits of your feeling better.