This is all so overwhelming

[tbowspen]

I am 55 years old, have been ridiculously healthy, and am joining this forum (my first ever) because I feel so overwhelmed about this new diagnosis of sleep apnea and cpap. I was diagnosed with high BP 3 months ago, and developed severe insomnia (maybe d/t anxiety over the BP) at the same time. I have always snored, and my husband has been complaining more about it for the past year. When I went to an MD "Sleep Specialist" it was for help with the insomnia, NOT daytime sleepiness. Well, after a home test, trying CPAP/APAP machines out, and a sleep lab study, I still get very little sleep at night, and I have to go on CPAP.

I tried out a bi-level machine for 6 nights, but it showed central apneas (MD thought, but no way to tell if I was awake or asleep), so I tried out a VPAP ASV(?) for a few weeks...THEN I went to the sleep lab (there were problems with scheduling), which showed I did not have any central apneas on CPAP alone. So I guess my permanent prescription will be for CPAP at low pressure (7). Last night I tried an S8 Elite (I think an older model), and it was so noisy that neither I nor my husband could sleep!! My husband said to "get rid of that machine"!

I read all of the encouraging posts for newbies, and realize that this may take time to adjust to. But if anyone can answer a few questions:

1. Is the Resmed S8 Elite II a quieter machine that the previous model? That's what I'm supposed to get from the DME, but the one I used last night was unacceptable for noisiness!

2. This seems like such a strange way to reslove insomnia (i.e unable to fall or stay asleep), when the treatment itself keeps one awake. Did anyone else present with the primary symptom of insomnia, NOT daytime sleepiness? I have always had good energy all day, no daytime sleepiness.

3. Does anyone on CPAP therapy take sleep aids? I'm trying not to, but have been taking Xanax at night.

Thanks, I know I sound like a whiner...I feel very alone with this problem, and I guess I'm not getting much support from around me.

[Uncle_Bob]

Welcome, You are not a whiner, your problems are very common.

1. Resmed Elite II has a reputation for being very quiet, are you sure its the machine making the noise and not the exhale port of the mask you are using? I recommend demanding an S8 Autoset from your DME, it can be run in CPAP mode also and is billed on the same insurance code as a CPAP machine so you are entitled to have one.
2. Have you tried to make treatment more comfortable by using the EPR and ramp features on the S8 Elite? Also aromatherapy is another option.

http://www.pur-sleep.com/products/produ ... category=3

3. Have you tried over the counter Melatonin at 6mg? Have you looked at improving your sleep hygiene? No TV before bed, no caffeine in the pm, read a boring book before bed or take a lavender bath etc?

Another thing you might try is using the machine during the day while awake just to get use to it and to have plenty of time to play around with all the mask adjustments.

[Janknitz]

Hang in there, I think we ALL feel this way at first.

The reason you have felt like you have insomnia is that the apnea causes you to wake multiple times during the night. You may not have perceived WHY you were waking, but the results of your study show why. A lot of people find they get up at night to urinate and are very restless. Sometimes you can't go back to sleep. For me, I was waking in the middle of the night in a puddle of sweat with my heart pounding and then I could not go back to sleep. I thought it was perimenopausal insomnia (for NINE years!), but now I know that I was having Apnea during REM sleep when your body is paralyzed, and that meant that my body had to do everything in it's power to wake me so I would breathe.

Even though I knew that I had sleep apnea (horrible snoring!) before I allowed them to diagnose me, it was still a great shock that I "really" had it, especially the severity.

Don't settle for a machine or mask that drives you nuts. The newer machines are VERY quiet and there are always masks to try if your mask is uncomfortable or leaking. Do your research here--there have been a lot of recent threads about machine noise you should read.

And getting used to the machine and mask is rough--Elena here on this board calls the adjustment period the "ring of fire" and she's not kidding. It IS harder to sleep at first. But once the machine, settings, and mask are all correct, you will have a night you sleep through and wake up feeling WONDERFUL. Then you will know it's going to be OK.

Personally, I would avoid chemical sleep aids if you possibly can. They will change your dynamics and you may not get a clear picture of how CPAP is or isn't helping. Try masking the noise with some white noise like a sound machine or MP3 player. Try some relaxation techniques and other "sleep hygiene" tricks before resorting to meds.

Hang in there and good luck. We're here to help or just to listen (whining is OK as long as you don't get stuck whining instead of DOING!)

[DreamOn]

Welcome, tbowspen! I'm sorry that you've had such a difficult time. Have faith that things will get better!

Many of us here didn't have excessive daytime sleepiness. I didn't, although I realize now (in retrospect) that I didn't really wake up feeling "refreshed" and I would often fall asleep while watching television in the early evenings. I would toss and turn a lot. I also had to get up once or twice a night to urinate, which is a common symptom of untreated sleep apnea that usually goes away with effective treatment. I could not think clearly or concentrate on tasks. I had always snored too. But the main reason that I was evaluated for sleep apnea was because my blood pressure was so high.

I have the S8 Elite II machine. I find it to be extremely quiet, but I've never used the former S8 Elite model so I can't really compare the two. To minimize any bothersome noise, you may want to place the machine below the level of your head. This can also help to prevent "rainout" within the tubing, which is excessive condensation. If rainout is a problem for you, you may need to adjust your humidifier setting and get an insulating fabric cover for the hose. Rainout can definitely cause some noise.

Some masks are quieter than others. My favorite nasal pillows mask, the AEIOMed Headrest, is very noisy on inhalation. It bothers me a little bit, but I love the mask otherwise so I have adjusted to it. Some of us use white noise machines or nature CDs (I like ocean and rain) to mask any sounds too.

I have never taken any sleep aids myself, but many people here do. Some medications are compatible with sleep apnea, while others definitely should be avoided. Hopefully, you'll get more information from others here regarding that.

If the S8 Elite II doesn't work out for you, perhaps you can exchange it for another machine. Many DMEs are willing to do that if you don't wait too long. The S9 machines are reportedly whisper-quiet. Most DMEs also have a 30-day mask exchange policy, so take advantage of that if your present mask isn't working well for you.

It may take a while to un-do the old patterns of sleep that you've been accustomed to, but I hope that you'll be sleeping more soundly very soon! Please let us know if you have any continuing difficulties. There are many very helpful, supportive people here who want to see your therapy succeed! It is crucial to treat the sleep apnea effectively so it won't continue to do damage to your body and brain. Perhaps if your husband learns how important it is to treat the sleep apnea, he will become more supportive. Learn all you can so you can teach him.

[BlackSpinner]

[quote="tbowspen" So I guess my permanent prescription will be for CPAP at low pressure (7). Last night I tried an S8 Elite (I think an older model), and it was so noisy that neither I nor my husband could sleep!! My husband said to "get rid of that machine"!

1. Is the Resmed S8 Elite II a quieter machine that the previous model? That's what I'm supposed to get from the DME, but the one I used last night was unacceptable for noisiness!
[/quote]

A good resmed s8 elite makes less noise then my air purifier in my room, or a fan. So bring it back and tell them there is something wrong.

As far as the husband is concerned - kick him out of the bed room until you have this solved. You don't need flak from this jerk too. Anyone who doesn't care about my health is not welcome in my life.

Before my OSA went severe I had no problem with daytime sleepiness but I did have insomnia and snoring and gasping.

[tbowspen]

Thank you to all who responded with your encouragement...I do appreciate it.

My husband is a good guy-been married 35 years, but, he, too, is accustomed to me being healthy as a horse, so to speak. So his adjustment is a challenge, too.

The MD said that the S8 Elite he loaned me for now probably needs servicing, and that the S8 Elite II would be quieter. I did have a lot of condensation in the tubing last night, maybe that can account for some of the noise, although the noise wasn't gurggling, more like "Darth Vader" in the room...I've been using the nasal pillows with all of the machines I've tried at home, but no complaint from hubby 'til last night with the S8 Elite.

Again, I've taken all of your advice (4 people so far), and thank you for your support!!

I'll fill in my equipment info when I get it.

[Babette]

From original poster "2. This seems like such a strange way to reslove insomnia (i.e unable to fall or stay asleep), when the treatment itself keeps one awake. Did anyone else present with the primary symptom of insomnia, NOT daytime sleepiness? I have always had good energy all day, no daytime sleepiness.

3. Does anyone on CPAP therapy take sleep aids? I'm trying not to, but have been taking Xanax at night."

YES! I presented with insomnia and snoring, not daytime sleepiness. As soon as I started on XPAP, I had such BAD nights, I was consistently incompetent during the day, too. I went on Provigil for a few months. It helped immensely. I could only tolerate half a dose. I took it for about 4 months, then inadvertently ran out and went cold turkey, and was fine from there on out.

I have regularly taken 2-3 Benadryls (generic actually, but it's easier to type than then Diphenhydramine whatchamicallit) before bed. Alot of it is emotional fear of insomnia. I have always taken them on a random basis. I go off them for awhile, then start up again later. All of my docs have said it's nothing to worry over. I've done prescription sleep aids BRIEFLY and didn't like them and haven't done them since starting XPAP.

You've found friends. These guys saved my life. And continue to do so.
B.

[DreamOn]

My husband is a good guy-been married 35 years, but, he, too, is accustomed to me being healthy as a horse, so to speak. So his adjustment is a challenge, too.

I can understand that. Your husband probably is concerned about you. It's a little disconcerting to see a loved one having to wear "medical gear." To the uninformed, CPAP can seem like a machine that breathes for you, which conjures up some disturbing thoughts. As you become more comfortable with it yourself, hopefully he will too. A sense of humor and playfulness can help with this therapy. He also may not know much about sleep apnea, and therefore doesn't understand (1) how it makes you feel and (2) how important it is to treat it. Your snoring has probably been keeping him awake at times for years, too, so he may not be as well-rested either, which can make one rather snappy sometimes!

I'm hoping that you'll both adjust to the therapy with some time. I do think that you'll find the S8 Elite II to be very quiet. I've been happy with mine.

Condensation in the tubing can make all kinds of different sounds, depending on how much water is in there. If you keep the machine and humidifier lower than your bed, that can help. Try not to have any dips in the tubing where the condensation can pool too. Some of us use a hose stand that brings the tubing up from the machine and then down to the mask, and that can help. You may have the humidifier up a bit too high, and/or you may need to cover the tubing as I mentioned earlier. When I used the H4i humidifier, even with a hose cover the highest I could set it was 1.5 without getting rainout. Your results may vary, as it does depend on room temperature (the colder it is, the more likely you are to get rainout) and atmospheric humidity. Rainout is something that can be worked out. Some people find that they don't even need the humidity. If you have any problems with your nasal passages drying out, you could try something like Ayr saline nasal gel or Simply Saline/Ocean nasal mist to moisturize the tissues inside the nose.

Let us know if we can help with anything else! And let us know what you think of your new machine when you get it.

[elena88]

I am very much in the same boat as you are...

I NEVER had daytime sleepiness, was an energizer bunny.. have never taken a nap in my life unless I had the flu..

went from morning till very late at night.. always moving.. hyper hyper.. foot tapping zooming.. bundle of energy..

healthy as a horse!

Now, I know, my husband would not buy me if I was a horse after a VET CHECK!

It is adjustment.. We both had to get used to this THING... THIS SLEEP APNEA THING.. and the REST OF YOUR LIFE... thing..

I am going on three months, and have a feeling by next month, Im going to have my machine, my humidity, my pressure, my ramp, my mask
figured out.. and will find my sweet spot..

and if you dont know what all that means, NEITHER did I.. but you will, and you will figure this out, and when you do, you will stop some nasty
things that were happening to your body you didnt even know could happen..
I was hyper all the time due to all the cortisol and adrenlin being pumped into me at night when I DID catch a few hours sleep..
all that because I quit breathing, was breathing shallow.. etc..

are you a shallow daytime breather too?

hang out here, all the advice you get here is fabulous!
(on my third machine, and fifth mask) LEARNING CURVE! BE READY FOR IT!
BIG PLUS THOUGH.. NO MORE NIGHT TIME TRIPS TO THE BATHROOM.. NO MORE NOCTURIA! YAHOO!
NO MORE HEART POUNDING and Aorta buzzing! things are looking UP!
you will get thru this!


elena

[KatieW]

Welcome to the forum, you've come to a good place for information, support and friendship.

Yes, there is alot to learn, but you don't have to learn it all at once. The 1st priority is getting the best machine and most comfortable non-leaking mask you can. Then, you can fine-tune as you go along.

I agree that the S8 Elite II would be fine.....but if water in your hose is an issue, and it might be if you keep your bedroom cool, then I would recommend the S9--which is the latest in ResMed's line. There are 2 models:

S9 Elite CPAP
S9 AutoSet APAP

Be sure that you also get the Climate Line, which gives control of the temperature and humidity in your hose.

The S9 Elite is a fixed pressure CPAP only. The S9 AutoSet can be set in either of 2 modes: CPAP (fixed pressure), and APAP (a minimum and maximum range of pressure). So it gives you a choice, and is nice to have, even if you don't use the APAP setting right now, you might later.

Work with your insurance, DME (vendor) and doctor to get the best machine you can.

[wil]

Everyone's covered the advice in a better way than I ever could, so I won't try that!

Just wanted to reiterate that it is worth it. I must admit that I had a relatively easy time adjusting. I felt SO Bad before treatment that I was eager to go. The minor improvements at first made a big difference. Once I got the right mask I really started to feel better, and it keeps getting easier.

Since I started aPap in late February, my blood pressure has dropped from 130s/100s to 115/70. I don't fall asleep at work anymore (but that was never a problem for you...). I was able to tolerate Chantix for the first time in my life, and I've quit smoking (Chantix causes weird dreams for some people in some situations). I have completely changed the way I eat, and I have the energy to work out AND play tennis almost daily.

Stick with it... It's worth it!

[DoriC]

Welcome, You're getting lots of good advice so my only suggestion is to use a thick mouse pad or folded towel under the machine, it really helps with the noise level. Also make sure your mask is the proper size and is fitted properly, you may have to experiment with different ones.

[pdean44]

I have the s8 elite II.

the machine is very quiet.
I hear a little bit of my breathing when i am trrying to fall asleep in the mask. I thought it would disturb my wife the sound but she said it really was not noticeable.
A bit more to you than anyone else because the mask is strapped to your face. I find it very soothing the sound like the sound of waves gently flowing up on to a beach.
It helps some to have a little white noise when you begin a fan or air conditioning etc to mask the noise until you grow used to it. It never bothered me from day one.
I never knew i had apnea i went to get help because i snore like a chain saw and my wife and i could no longer sleep together.
Any noise that machine can make is way better than my snoring. In fact any noise was better than that.

I have been into this for a few months now and i feel a noticeable improvement. I dont feel like a spry 18 year old but then i am 52 years old. I do notice i seem to have more energy then when i started.
Some folks feel better right away and some gradually. I think i am in the gradual group. The bottom line is we all go thru periods of adjustment and trying to get this program to work. It will work if we give it a chance and get the right gear keep a positive attitude.

I feel a bit better and i hope you do too soon

[ccm]

If you have felt alone and unsupported, this is the right place to come. Although my husband tried to be supportive, he really couldn't understand the emotional and physical issues of CPAP therapy - the folks on this forum do! - - - supportive and are full of good, practical advice!

After you are sure you have the right machine, take one day at a time - it WILL get easier. Like you, I didn't have daytime sleepiness or lack of energy - pulmonary hypertension was my primary symptom and I finally accepted that the results of therapy will be a long-term goal. Stick with it - the alternative is totally unacceptable!

Good luck and good night!

[topdragster]

tbowspen I can't really offer any advice as I am very new to this too. I can however say in my particular situation after 2 weeks of cpap therapy I am so glad I did it. My wife doesn't complain about the noise as she already has a noise machine that she has set on "crickets" that she used to drown out my snoring. I feel alot better now and know I am getting a good sleep(so is my wife). Hang in there and it will get better in the long run.