06-25-2016, 04:12 PM
Hello everyone. I'm new to this board. I'm also on another board, but wanted to get some more opinions if possible.
For 20+ years I have been struggling with chronic fatigue, fibromyalgia, insomnia, depression, anxiety, headaches, and more. I've been to numerous specialists and doctors over these years, with nothing ever found "wrong". This started when I was 18, a day after I got an MMR shot then got really sick. That illness turned out to be Mono, which incapacitated me for 6 months. I'm 41 now and my health has steadily gotten worse. My "treatment" has mainly been antidepressants and benzos for sleep. I take Pristiq 50mg, Wellbutrin 300mg, and Valium 10mg. I am probably going to do a slow taper (6 months) off the Valium because I have learned it affects sleep architecture and suppresses deep sleep.
So, where has led me? A year ago I had a sleep study done. It did not detect any sleep-disordered breathing at all, but I was snoring 2x a minute and had 19 "arousals" (changes in brainwaves) per hour. In addition, I spent 16% in N1 sleep, 78% in N2, 0% in N3, and 6% in R sleep. I would describe my sleep as very light, frequent awakenings to turn over, lots of dreaming, completely non-restful and non-restorative. I also have a hard time going to sleep at a normal time. My circadian rhythm is off and falling asleep at 3am or later isn't unusual for me. Talking with other people on Facebook about my sleep issues, one person suggested I may have UARS (Upper Airway Resistance Syndrome), which can be as debilitating as apnea. I read an article on it and it sounded like me to a "T". All these quirky little things common to people with UARS described me so perfectly. However, UARS is hard to detect on regular sleep studies and it's basically impossible to find a place that does the actual test for this. It's more confined to research places.
Then, I got referred to an ENT who is also board certified in sleep medicine. I brought up UARS and he said it's very possible I could have it and he gave me an RX for an APAP. I'm thinking, hallelujah, this might be the answer to my prayers! I went and bought a machine and accessories on [link removed] Supplier #1 in Supplier's List
(insurance wouldn't cover and my PCP was giving me and my ENT a hard time about it). I have a very minimalist mask that I like (DreamWear) and have only used it about 4 times, but it disturbed my sleep even worse! I think simply because I am such a light sleeper, this "thing" on my face kept disturbing my very sensitive brain. After each time I used it, even though I felt like I was asleep for my typical amount of time, I felt so much WORSE when I woke up as far as fatigue, with horrible bags under my eyes. One day I even woke up feeling dizzy and feelings of hyperventilation (I think I got too much oxygen possibly). Pressure has stayed low between 4 and 6. My machine has detected a couple regular apneas and up to 14 hypopneas and my mask has fit almost perfectly with almost no leakage.
I am contemplating these options:
1) Wear the CPAP during the day while awake at a fixed pressure (I'm home all the time and sit in my bed on my laptop) and maybe it will force me to breathe deeper, thus getting more oxygen in the long run, and maybe helping my mental energy to some degree (I am a shallow breather). This is just a theory and can't find any info to back up this theory.
2) Try wearing it at night again, but for a shorter period of time to start (say only 3 hours max) to try to get used to it and work up to the whole time. Although, I may be potentially wasting my time in the process while out a lot of money on this machine.
3) Sell everything.
Here's the data I obtained from my phone's app:
6/14: Used 7 hours, AHI 2.2, 4 Obstr. Apneas, 11 Hypopneas
6/19: Used 10 hours, AHI 1.5, 1 Obstr. Apnea, 14 Hypopneas
6/20: Used 9.5 hours, AHI 1.4, 2 Clear Apneas, 2 Obstr. Apneas, 9 Hypopneas (This is the day I woke up w/dizziness and hyperventilation symptoms)
I have my SleepyHead screenshots for 6/19 & 6/20 but I can't seem to post or attach them here
I lost the data for 6/14 because I had technical difficulties with SleepyHead and ended up formatting the SD card to start over.
Thank you for any advice you can give me!
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In response to:
1 - unless your daytime O2 is low, wearing your CPAP during the day will do nothing. It won't force you to breathe deeper. It's not what a CPAP does. However, wearing it an hour or so at a time during the day will allow you to get used to the whole thing of it.
2 - see #1
3 - that's up to you but...
For one, what were the results of your sleep study? Specifically, what was the AHI breakdown? "Snoring twice an hour" tells us you snore. That doesn't tell us if there was a narrowing (hypopnea). People can snore and not be having hypopneas. Data for those three nights does not tell us much, either. It says that for those three nights, at some pressure or another, your AHI is less than 5. That is the goal. Anything less than 5 is excellent. If you are experiencing symptoms (you said light headedness) then it is due to something else, not due to your obstructive or central sleep apnea since that limited data says it is under control.
Your best bet is to use the machine at night as much as you can. Get used to it. Discuss UARS treatment with your sleep doctor (if you have not already). Ensure you have the best machine for treating your UARS. if a machine can treat it.
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A CPAP won't force you to breathe more deeply, but the strangeness of it might make you more mindful of your breathing and thus consciously breathe more deeply. That won't work for long or while you are sleeping.
Snoring 2x a minute and having 19 "arousals" per hour (every three minutes) does not sound like a recipe for a good night's sleep. Nor does "0% in N3, and 6% in R sleep". "my sleep is very light, frequent awakenings to turn over, lots of dreaming, completely non-restful and non-restorative" also does not sound good. Disordered or not you have a sleep problem that is likely respiration related. You can fix your sleep timing problem with sleep compression therapy. But if you thought a few nights of poor sleep on CPAP was bad, you ain't seen nothing yet! Sleep compression therapy is brutal, but it works wonders.
Lots of people are sensitive, noise sensitive, claustrophobic, etc. etc. and have a terribly hard time getting used to CPAP. But they have succeeded and you can too -- if you want to. And it takes time to be fully effective, months not days. Feeling worse to start with is not at all unusual. Just read some of the posts on here. None of us ended up on here because we put a mask on one night and the rest of our life was perfect. We are here for a reason. And that reason, pre or post treatment SUCKED.
The machine does not know if you are awake or asleep and will score events as if you were asleep. In the sleep lab, they can tell and they will exclude events from when you were awake. So your AHI numbers could come from times when you were not sleeping. Or you might just have slept differently in the lab. Make a few more posts and you will be able to post links.
I also think that your pressure is too low to treat UARS. It would be too low for me to even feel comfortable.
My advice would be to stick with it for 3-6 months and re-evaluate then. You have only made the first, baby steps so far. If you care, it is tool early to give up.
06-25-2016, 05:49 PM
(This post was last modified: 06-26-2016, 12:02 PM by green wings.)
If you look at the Events graph in SleepyHead, you will see a line for "RERA" events. That's where your UARS-type events will show up. You might also look up the term "flow limitations" in the SleepyHead program's glossary and watch for those events. They are sub-apnea events like the RERAs.
I really think that CPAP therapy can be helpful for people with CFS/fibromyalgia. (I may be assuming that all those people have some sort of UARS-type sleep problem.)
More stable mood and getting rid of the "tired but wired" feeling are two likely improvements.
You could probably also benefit from using some sort of tech gadget that monitors your sleep stages. The tech available now isn't as good as an EEG, of course, but some of the ones that people have posted about on this forum are the S+ Sleep Tracker by ResMed and the FitBit Flex. There are also gadgets that you can get that have a sensor that goes under your mattress, like the Withings Aura. That can help you to figure out if you start to get more N3 (slow-wave) sleep when you use CPAP.
Welcome to Apnea Board.
Not sure why you can't post your graphs, but you could always try a free image host like imgur
and then share the link.
Your diagnosis study's sleep phase stats sound virtually identical to mine, but I don't have the same trouble achieving sleep, feeling awake, nor did I have any real adverse reaction to the treatment other than my one night on CPAP (as opposed to APAP). I also don't take meds-- I'm sure that can complicate things from individual to individual. I say all this just to caveat how things can look similar yet be so different.
Did your old study produce an AHI number? More importantly, did it mention your oxygen levels? Especially since you claim to be experiencing hyperventilation, I'm curious what your oxygen levels are like. One option is to try supplementing your data with a pulse-ox capable of recording nightly data.
Have you only used the machine/mask for 4 nights total? If so, I think you'll hear a common response from people that 4 nights isn't enough to get used to a the CPAP experience. I'm one of the lucky ones, but I know a lot of people have a very tough time sticking with this type of treatment, which is exactly why the insurance companies monitor usage so closely to ensure that people are actually using the device as prescribed. They wouldn't go through such lengths if folks didn't reject it so often.
I use the same mask as you, and I agree it can be disturbing some nights due to its high noise level. Earplugs helped me get past my mask disturbances. I also switched to a firmer pillow to avoid sinking in and blocking the upper vent where the hose attaches to the mask. It's very important not to block your vents or you end up recycling CO2, which can completely counteract your treatment and leave your brain foggy.
I was a light sleeper like you when my apnea was untreated, but now I'm able to sleep through the night without being disturbed by little things. Hopefully if you can figure out the root cause of your issues and get used to treatment, you can experience the same relief.
Wow, lots of input and suggestions, thank you! I will try to put all pertinent info from my sleep study here (again keep in mind this was done 1 year ago).
Total recording time: 415.5 minutes
Sleep period time: 403.0 minutes
Total sleep time 271.0 minutes
Sleep efficiency is 66%
Sleep latency is 12 minutes
REM latency is 60.5 minutes
Already listed the % of times in each stage above...
0% time in supine position (I am a strict side sleeper)
Hypopneas scored under 4% rule
Oximetry - mean Sa02 of 95% in awake state. This averages 95% in non-REM sleep and 94% in REM sleep. Lowest oxygen level recorded was 91%.
Pulse rate - mean pulse 68/min in awake state. This averages 68/min in non-REM sleep and 67 in REM sleep.
Snoring disturbed the sleep approx 2x/minute. There were approx 19 spontaneous arousal per hour.
No periodic limb movement.
By the way, I'm trying to get a hold of my sleep study's "raw data". Not that I'll necessarily know how to read it, but maybe it will be helpful in some way.
06-25-2016, 06:50 PM
(This post was last modified: 06-25-2016, 06:52 PM by OpalRose.)
You need 4 posts before you can upload your data. Use an outside source like imgur to post a screenshot here.
It's unfortunate that you had to pay for your machine. Insurance is pretty fussy about a diagnoses of UARS. But the recommended treatment is the same, CPAP use.
Don't sell or get rid of your machine. You don't realize it now, but even with the limited information you have given us, it's clear that you need it.
Practice wearing your mask hooked up to your machine before bed. If you are doing computer work or reading, the time will pass by quickly. This will help you get used to the feel of it.
I would set that machine with a minimum pressure of 6 and maximum of 12, set your AFLEX to 2. This will help you exhale easier. You don't realize it now, but a minimum pressure of 6 is much easier to breathe with than 4. At 4, most folk feel air starved.
I know it may be hard to get used to, but you need to tell yourself "you can do it". You may have a mild case now, but in time, "untreated" sleep apnea or UARS will affect your health in negative ways.
Order the Clinicians manual if you don't have one.
(06-25-2016, 05:24 PM)PaulaO2 Wrote: In response to:
I don't think my daytime oxygen is low...every time I go to the doctor's office it's like 98%. So it does seem the consensus that wearing it during the day will not improve my fatigue in any way at all
I guess it is possible I blocked the exhalation hole, accounting for the dizziness. Really not sure.
I will talk to my Dr, but I have a feeling he will be useless since he was only guessing I may have UARS based on all the symptoms I had.
(06-25-2016, 05:48 PM)chill Wrote: A CPAP won't force you to breathe more deeply...
Haven't heard of sleep compression therapy. Will have to check that out.
Didn't realize so many people had so many difficulties getting used to the machine.
When I had the machine on, I think it went up to 6 or so. I'll post pics of SleepyHead when I can.
Re giving it time, thanks. You have echoed a lot of other's sentiments as well...
(06-25-2016, 05:49 PM)green wings Wrote: Hello, cpap4uars...
Hi green wings,
You sound a lot like me health-wise, just about 15 years older.
Your sleep study really did give a firm diagnosis that's for sure. I on the other hand am in guessing land
On my SleepyHead data I see 5 RERAs on the one day and 9 RERAs on the following day (the day I woke up dizzy).
I'm very happy to hear that CPAP has helped you so much. I would love to get any kind of improvement, but so far I've just felt like garbage upon waking
Re: naps, yes I do nap occasionally during the day. A typical routine is go to bed between 3-5am, wake up at 1pm, and if I get tired later I will take a nap from like 7-10pm, then get up and go back to sleep at my normal time. Very weird, but I definitely don't nap every day. Maybe 1-2x week.
Someone else suggested a fixed pressure mode...the theory was maybe the change in pressure was causing a brain arousal? Not sure. I have figured out how to change the settings.
I have it on the highest Flex setting (3). Seems to be good to me.
I tried low humidity but I don't think I need it right now because it's so humid down here in FL currently. So, I tried without it and it seemed fine to me, but I will experiment some more.
I feel like my mask is pretty comfortable, but I'll take a look at the one you recommended. Thanks!
That's great that you started getting deeper sleep with the CPAP. If I could get those deep stages I think I would be a new person!
Yep, going to taper the Valium. The Wellbutrin I can probably do without. The Pristiq I think I am stuck with.
Thanks for the welcome!
(06-25-2016, 05:50 PM)shawn42 Wrote: Not sure why...
Yes I need a few more posts in order to posts the pics.
Meds definitely are probably a factor in my sleep quality. I just can't be sure if some of my fatigue IS related to sleep-disordered breathing yet.
Posted the sleep study summary stats above.
Thank you all!
Hm, your sleep study may not have been scored in such a way as to know whether the spontaneous arousals that you had were RERA/UARS events or not.
Since you have your APAP machine plus SleepyHead, though, that gives you a very good tool for finding out if you are having RERA events and flow limitation, which is what you will be interested in from a UARS point-of-view.
from the SleepyHead Sleep Disorder Glossary
: "RERA Detection in the Respironics System One data..Respiratory effort-related arousal..defined as an arousal from sleep that follows a 10 second or longer sequence of breaths that are characterized by increasing respiratory effort, but which does not meet criteria for an apnea or hypopnea. Snoring, though usually associated with this condition need not be present. The RERA algorithm monitors for a sequence of breaths that exhibit both a subtle reduction in airflow and progressive flow limitation. If this breath sequence is terminated by a sudden increase in airflow along with the absence of flow limitation, and the event does not meet the conditions for an apnea or hypopnea, a RERA is indicated."
06-25-2016, 07:38 PM
(This post was last modified: 06-25-2016, 07:38 PM by cpap4uars.)
(06-25-2016, 06:50 PM)OpalRose Wrote: cpap4uars...
Yeah I knew my insurance would not have covered it. I figured it was possibly worth a shot for me to buy it.
Interesting that you think it is clear that I need the machine. Let me know what you think after I get the SleepyHead pics up...
I'll try the higher starting pressure...
I have the clinician's manual. Already figured out how to tinker the settings