Overcoming SDB / UARS

Hi All,

Log time lurker, first time poster here. I wanted to start out by saying that this forum has been a great resource for suggestions and support! I apologize in advance as this is going to be a long post...

First, a bit about myself and my experience. I'm 5' 11", 190 lbs, BMI of 26.5 and 16" neck. As I've gotten older, I've gained some weight and started snoring quite loudly, but not stopping breathing or anything. I started getting chronic headaches and back/neck pain, fatigue, anxiety, inability to deal with stress, low mood etc, and it took me a few years to get a diagnosis as my previous doctors were simply just not considering sleep as a factor. I saw a few specialists that focused only on individual symptoms and I finally had to refer myself to get a sleep study as my health issues came to a point where I could no longer cope.

My sleep study confirmed a diagnosis of "moderately severe sleep disordered breathing". Interestingly, my study also found that I had an AHI of 0 as I experienced no apneas, but my RERA index/RDI was 28.4/hr. Here is some more info regarding arousals from my study: "Sleep was severely fragmented by respiratory events and spontaneous arousals. The patient experienced 225 arousals in total, for an arousal index of 47.6 arousals/hr. Of these, 134 were identified as respiratory-related arousals (28.4/hr), 16 were PLM-related arousals (3.4/hr), and 75 were spontaneous (15.9/hr) ---the result of no identifying cause." My study was over a total sleep time of only 283.5 minutes which was sub-optimal, yielding a sleep efficiency of only 66.1% O2 Sats, cardiac and limb movements were all within acceptable levels.

Fast forward to today, and I have been on APAP for a little over a year (413 days says Sleepyhead), and the numbers from my machine look really good. Like AHI/RDI under 1/hr most nights. I am 100% compliant unless I have a sinus cold and can't breathe with my nasal pillows. Whether I sleep 6, 8, or 10 hours, my mask and machine are on. I feel as though I have hit a plateau, as I am still totally exhausted all the time. I try to get between 7 and 9 hours a night and no matter how much I try to get quality sleep, I just feel unrefreshed almost every morning. I've spoken to my sleep doc about this, and he's pretty much a numbers guy. Basically he told me that the machine is doing its job and doesn't seem interested in doing anything more than prescribing sedatives as a next step. My new GP is pretty awesome though and is willing to try a few different things, including getting a second opinion from a different sleep doc.

Here's what I have found with medications and sedatives: 3.75 mg of Zopiclone knocks me out, but I don't feel refreshed at all the next day. I just feel out of it and sometimes it makes me really depressed. I choose not to take Zopiclone unless I am desperate. Clonazepam works well, only 0.25 or 0.5 mg at bedtime and I feel pretty good the next day, and it is the closest thing I can describe as getting refreshing sleep. I limit my Clonazepam use to 1 or 2 nights a week. However, my GP is concerned about long term use of benzos of course, even at the low frequency that I take them. So now my GP just prescribed a low dose of 25 mg trazodone nightly and I am only a few days in on it. I'm not sure yet if it is really helping, so I need to give it some more time.

As for lifestyle, I try to get as much walking and elliptical in as I can, and do yoga once a week for back pain. My diet could be better no doubt, but I try to watch what I eat and exercise portion control. I work full-time with a flexible schedule, but we are understaffed and are very busy at work right now, but I suppose that's better than the alternative. My wife and I also have two kids under 3 right now, so everybody knows how that can affect sleep and everything else. I limit alcohol and caffeine intake, and don't drink nearly as much of either anymore. I supplement with vitamin D, b-complex and magnesium, but don't want to overdo any of those. Reducing stress has become a central focus of mine and I am taking steps to see what I can do to address this.

Here are some questions to all of you that suffer from SDB/UARS. I am convinced that I have UARS as my symptoms are all explained by it, and I know that when I do get quality sleep, literally all of my symptoms improve. My APAP machine is definitely working in terms of managing respiratory issues, but I feel like my nervous system has outsmarted the machine and I must still be getting spontaneous arousals or something else throughout the night. Does anyone else out there have a similar experience to this? What did you and your docs do beyond treating with xPAP? Are there any medications or natural supplements that were effective in helping your sleep quality? Are there any other lifestyle changes that helped affect the quality of your sleep? Bonus question for anyone living in Calgary, Alberta: Do you find that the whacky weather we always have here affect your sleep as well? I find that the constant sudden air pressure changes and "Chinooks" affect my headaches and sleep tremendously.

Again, thanks all for listening to my rambling, and any tips or suggestions would be much appreciated!

Whisky Bravo wrote:3.75 mg of Zopiclone knocks me out, but I don't feel refreshed at all the next day. I just feel out of it and sometimes it makes me really depressed. I choose not to take Zopiclone unless I am desperate. Clonazepam works well, only 0.25 or 0.5 mg at bedtime and I feel pretty good the next day, and it is the closest thing I can describe as getting refreshing sleep. I limit my Clonazepam use to 1 or 2 nights a week. However, my GP is concerned about long term use of benzos of course, even at the low frequency that I take them.

I am not a fan of any of these drugs for use in treating SDB patients. Our problem is breathing and these drugs don't help with breathing and some may make it more difficult to breathe properly.

What the drugs do is treat the symptoms - anxiety, sleeplessness, insomnia - without addressing the problem.

Whisky Bravo wrote:Are there any other lifestyle changes that helped affect the quality of your sleep?

These are mandatory in cases like yours (and mine):

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Practice total abstinence of caffeine including sources like chocolate
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Optimize emotional stress in your life

Edit: I am saying the items on sleep hygiene, diet, etc. are necessary but not sufficient. You do need an optimized CPAP therapy to overcome the problems.

Whiskey, welcome to the forum.

When it comes to UARS the data recorded by our machines (the "numbers" your docs are looking at) do not always tell the whole story. Though the PR machines have a way to estimate RERAs they cannot directly measure RERAs (respiratory effort related arousals). And your SDB is all about flow limitations and arousals, and not apnea/hypopnea events.

From what I understand people with UARS often need some fairly high pressures and some do best with bilevel (Bipap) machines. You might find this article, submitted to the forum by Dr. Barry Krakow, informative: our-collective-cpap-wisdom/flow-limitat ... BiPAP.html. I'm not suggesting that you need a different machine, I obviously don't know, but I do wonder if your docs have experimented with your pressures during the past year to see if there's an improvement in symptoms (rather than just trying various meds).

Whisky Bravo, read this report:

http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3

The 15+ spontaneous arousals per hour is similar to my current situation. I'm fortunate that my doctors are willing to experiment. Better still, they encourage me to self-titrate dosages and report back the results.
So far, in trying to fix this problem, they tried metoprolol which just made my next day worse, trazodone which seems to help in how I feel but a dose of 37.5 mg dropped me into a fair number of bradycardia events but titrating down to 12.5 mg does well. We're currently working on a cloniprine .1 mg/day patch but there seems to be no effect.

So Trazodone may help but you really should check with a pulse oximeter every night to make sure the dose isn't affecting your heart rate.

Have you taken a complete list of all your meds, both prescription ond OTC, to your pharmacist to see about interactions? There are some surprising ones out there.

Do you have any other seemingly unrelated symptoms? "Hot Flash-like symptoms, night sweats, headaches, spikes in blood pressure or high blood pressure?

It's possible that something else is going on besides your SDB / UARS.

Hi - I'll let others get to the more technical stuff (and they will), but a little thing that can make a big difference to many is to not sleep on your back - it not only provokes apneas (realize you don't have them as such), but your open mouth will lose lots of therapy air on Cpap (or whichever version of it you use), but snoring can almost disappear on your side and many of us make a real point of not back sleeping by using pillows, foam wedges, etc. in behind to keep us sideways. One thing as well, if you consciously or otherwise have developed a rigid position on Cpap trying not to get leaks, etc., that might be responsible for your back pain too - better to address leaks in other ways, plus use a 'hose buddy' (Google it) to deal with the hose tangling than trying to lie in a particular position.

None of the above may be relevant to you of course, but if any is... hope this helps.

Hello whisky bravo!
In several other forum reports many people with Lyme disease major problems with aurosals and insomnia. After long antibiotic treatment reverts sleep to normal again.

Hi Whiskey,

Welcome to the forum.

When you had your titration, what pressures were provided as getting your RDI below 5? Perhaps, ask your doctor about slowly increasing the pressure above that amount to see if that improves your sleep quality since as Kaiasgram rightfully mentioned, higher pressures might be helpful. And depending on your pressure needs, I would also second her advice to look into the possibility of a bipap machine that might be more suitable.

Also, how is your nasal breathing as the lack of nasal optimization can also contribute to poor quality sleep?

I would look at these options instead of going the med route. I am not anti sleep meds in certain cases but to be honest, I am horrified they were prescribed for you, particularly when there is no evidence that I am aware of that they improve the quality of sleep in the long term.

49er

49er wrote:lack of nasal optimization

WT???

ChicagoGranny wrote:

49er wrote:lack of nasal optimization

WT???

Oy, I have to admit that is a poorly worded statement. I should have said, "How is your nasal breathing as problems with that can contribute to poor quality sleep?

49er

Hi All,

Thanks everyone for replying. Lots of great ideas and suggestions here. I'll try to answer everyone's questions in one shot.

49er wrote:Hi Whiskey,

Welcome to the forum.

When you had your titration, what pressures were provided as getting your RDI below 5? Perhaps, ask your doctor about slowly increasing the pressure above that amount to see if that improves your sleep quality since as Kaiasgram rightfully mentioned, higher pressures might be helpful. And depending on your pressure needs, I would also second her advice to look into the possibility of a bipap machine that might be more suitable.

Also, how is your nasal breathing as the lack of nasal optimization can also contribute to poor quality sleep?

I would look at these options instead of going the med route. I am not anti sleep meds in certain cases but to be honest, I am horrified they were prescribed for you, particularly when there is no evidence that I am aware of that they improve the quality of sleep in the long term.

49er

The respiratory tech I worked with basically increased the pressure remotely via a cellular modem during my trial while I was getting used to sleeping with the mask and machine. Initially the min pressure was quite low, 4.0 cm I think, to what it is now 7.0 -12.0 cm. Once I was at my current pressures and compliant, the numbers have always been good. From Sleepyhead I see a 90% pressure of 7.0 cm, and rarely see the pressure exceed 8.5cm. My past 6 month RDI is 0.74.

Nasal breathing is good, sometimes I use a breathe-right strip as well as the pillows, and the only time I can't use the mask is when I have a nasty sinus cold.

As for the sleep meds, I'm not crazy about them either. Zopiclone especially is horrible stuff and I am not using it anymore due to the side effects. My current sleep doc was the one that prescribed those...

Lazer1234 wrote:Hello whisky bravo!
In several other forum reports many people with Lyme disease major problems with aurosals and insomnia. After long antibiotic treatment reverts sleep to normal again.

I really hope it's not Lyme, as Alberta's provincial health care system is behind on that disease and is not very good at detecting or treating it from my understanding. It's worth discussing with my GP though.

Julie wrote:Hi - I'll let others get to the more technical stuff (and they will), but a little thing that can make a big difference to many is to not sleep on your back - it not only provokes apneas (realize you don't have them as such), but your open mouth will lose lots of therapy air on Cpap (or whichever version of it you use), but snoring can almost disappear on your side and many of us make a real point of not back sleeping by using pillows, foam wedges, etc. in behind to keep us sideways. One thing as well, if you consciously or otherwise have developed a rigid position on Cpap trying not to get leaks, etc., that might be responsible for your back pain too - better to address leaks in other ways, plus use a 'hose buddy' (Google it) to deal with the hose tangling than trying to lie in a particular position.

None of the above may be relevant to you of course, but if any is... hope this helps.

Always been a side sleeper, ever since I was a teen. I don't think I could sleep on my back if I tried! I do know that I toss and turn a lot though. I checked out the hose buddy and it gave me an idea, so I jerry rigged something with my headboard and now I am having less tangling issues.

JDS74 wrote:The 15+ spontaneous arousals per hour is similar to my current situation. I'm fortunate that my doctors are willing to experiment. Better still, they encourage me to self-titrate dosages and report back the results.
So far, in trying to fix this problem, they tried metoprolol which just made my next day worse, trazodone which seems to help in how I feel but a dose of 37.5 mg dropped me into a fair number of bradycardia events but titrating down to 12.5 mg does well. We're currently working on a cloniprine .1 mg/day patch but there seems to be no effect.

So Trazodone may help but you really should check with a pulse oximeter every night to make sure the dose isn't affecting your heart rate.

Have you taken a complete list of all your meds, both prescription ond OTC, to your pharmacist to see about interactions? There are some surprising ones out there.

Do you have any other seemingly unrelated symptoms? "Hot Flash-like symptoms, night sweats, headaches, spikes in blood pressure or high blood pressure?

It's possible that something else is going on besides your SDB / UARS.

I'm going to talk to my doc about the trazadone. 25 mg seems to do nothing much and 50 mg leaves me more tired and foggy in the morning. Definitely a good idea to talk to the pharmacist about any potential interactions as well.

Other symptoms: I have never been able to regulate my body temperature well. I run hot all the time and do get night sweats and sometimes wake up because of this. I have chronic headaches and they are exacerbated by poor sleep and some other factors such as weather and stress. Investigation of my headaches turned up nothing even after MRI's etc. Blood pressure seems to be pretty consistent, and it was actually getting low without APAP for me but returned to my "normal" after being treated.

My GP currently is thinking that something else may be occurring as well at night, perhaps RLS or PLMS. He suggested a second opinion from another sleep doc which I am in agreement with. Interestingly, I used to get severe leg cramps at night frequently for as long as I can remember, and they have almost disappeared since going on APAP. I might get leg cramps twice a year now.

avi123 wrote:Whisky Bravo, read this report:

http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3

Thanks! I did come across when I first heard of UARS and it was very eye opening for me as it explained a lot of my challenges and issues.

kaiasgram wrote:Whiskey, welcome to the forum.

When it comes to UARS the data recorded by our machines (the "numbers" your docs are looking at) do not always tell the whole story. Though the PR machines have a way to estimate RERAs they cannot directly measure RERAs (respiratory effort related arousals). And your SDB is all about flow limitations and arousals, and not apnea/hypopnea events.

From what I understand people with UARS often need some fairly high pressures and some do best with bilevel (Bipap) machines. You might find this article, submitted to the forum by Dr. Barry Krakow, informative: our-collective-cpap-wisdom/flow-limitat ... BiPAP.html. I'm not suggesting that you need a different machine, I obviously don't know, but I do wonder if your docs have experimented with your pressures during the past year to see if there's an improvement in symptoms (rather than just trying various meds).

I did bring up experimenting with higher pressures last fall and my sleep doc had zero interest in it. He said that the numbers in my machine did not support the need for higher pressures, end of story. I actually convinced my respiratory tech to show me how to adjust the pressures and I did experiment myself a bit, but found I would just experience bad aerophagia. I had only increased the min pressure from 7 to 8 cm. I will bring up the prospect of bipap with my docs at the next opportunity though as the research does show success in many UARS patients.

ChicagoGranny wrote:

Whisky Bravo wrote:3.75 mg of Zopiclone knocks me out, but I don't feel refreshed at all the next day. I just feel out of it and sometimes it makes me really depressed. I choose not to take Zopiclone unless I am desperate. Clonazepam works well, only 0.25 or 0.5 mg at bedtime and I feel pretty good the next day, and it is the closest thing I can describe as getting refreshing sleep. I limit my Clonazepam use to 1 or 2 nights a week. However, my GP is concerned about long term use of benzos of course, even at the low frequency that I take them.

I am not a fan of any of these drugs for use in treating SDB patients. Our problem is breathing and these drugs don't help with breathing and some may make it more difficult to breathe properly.

What the drugs do is treat the symptoms - anxiety, sleeplessness, insomnia - without addressing the problem.

Whisky Bravo wrote:Are there any other lifestyle changes that helped affect the quality of your sleep?

These are mandatory in cases like yours (and mine):

- Practice good sleep hygiene (Google it and read several sources)
- Eat a good diet
- Have a regular, moderate exercise program
- Practice total abstinence of caffeine including sources like chocolate
- Review all medicines, vitamins and supplements you are taking to make sure none are interfering with sleep
- Optimize emotional stress in your life

Edit: I am saying the items on sleep hygiene, diet, etc. are necessary but not sufficient. You do need an optimized CPAP therapy to overcome the problems.

Thanks, those are all great recommendations! I will use them to review my current routines and see what can be improved upon.

Have you tried straight pressure? a lot of people have Microarousals on APAP due to changes in pressure. You may be one of them. I would suggest you try settin your machine in APAP mode but with max = min = your 90% pressure for last 30 days.

Sleep with this config for 10 days and evaluate how you feel.

I was in a similar situation with < 0.5 RDI but feeling like crap. After going to straight pressure, all is well.

You can read about APAP Microarousals on pubmed. There is a very good paper on it.

Guest1 wrote:Have you tried straight pressure? a lot of people have Microarousals on APAP due to changes in pressure. You may be one of them. I would suggest you try settin your machine in APAP mode but with max = min = your 90% pressure for last 30 days.

Sleep with this config for 10 days and evaluate how you feel.

I was in a similar situation with < 0.5 RDI but feeling like crap. After going to straight pressure, all is well.

You can read about APAP Microarousals on pubmed. There is a very good paper on it.

That's actually a really good idea. I will try that.

I have UARS. First diagnosed in Aug 2010. I have tried cpap, apap, bipap, asv, dental mouthpieces, surgery. I wish there was a magic bullet. I have yet to find one. My symptoms are worse in the summer or at high altitudes. uars appears to be the most difficult to treat based on reading these forums. If you find the magic bullet please let me know. I have heard the higher pressure argument but there appears to be conflicting evidence. probably worth a shot, though.

tiredintenn wrote:I have UARS. First diagnosed in Aug 2010. I have tried cpap, apap, bipap, asv, dental mouthpieces, surgery. I wish there was a magic bullet. I have yet to find one. My symptoms are worse in the summer or at high altitudes. uars appears to be the most difficult to treat based on reading these forums. If you find the magic bullet please let me know. I have heard the higher pressure argument but there appears to be conflicting evidence. probably worth a shot, though.

I'm sorry to hear you have not found some relief. I will certainly share with everyone what works for me. Out of curiosity, which surgical procedure did you undergo?