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I have been dealing with severe daytime sleepiness, irritability and what I believe to be a cognitive
deficit for probably 5+ years. In the last 3 or so years I started looking into medical conditions
after the usual like sleep hygiene didn't work. I've been under CPAP treatment for well over a year
now, but I haven't had any improvement in my symptoms even though my AHI is usually very low. I have
not had much success in terms of getting help with the NHS, they just say my AHI is low and they
aren't really interested.
I wake up an average of 3-4 times a night to go to the toilet, and my first awakening is after around
4 hours, almost like clockwork. My machine was prescribed based on the results of a home sleep study
(oximetry) that showed severe heart rate variation in the absence of oxygen desaturation. I have never
had a Polysomnography (overnight sleep study.) I've had excellent compliance with using my CPAP
machine, I use it every night for 7+ hours.
I recently saw my sleep Doctor after a 4 month wait and he said that he suspected that I have
asthma. I told him that my older brother has asthma, and also that I sometimes have difficulty
breathing when I lie down, but I lack any sort of wheezing, coughing or tightness in the chest that
asthmatics usually have.
I've been taking two doses of a prevention inhaler twice a day exactly as prescribed. The doctor said
that the medication takes 3 months to show effect, but I don't know how true this is. He also said
that he'd only see me again in 9 months, which leaves a 6 month gap between when the effectiveness will
be known and any kind of action. I haven't experienced any improvement in the almost 3 weeks that I've
been using the medication.
Getting to the point, I'd like to ask for any general advice regarding my situation and help in
interpreting my CPAP data. Been trying different EPAP levels lately, not much success.
Don’t rule out allergies either. I started allergy shots the exact time as CPAP. My Dr. is an allergy/asthma specialist. My progress for both have been along the same time table. Allergies can lead to asthma. It took close to a year to get relief from my allergy and get my sleep acceptable. Now after 2 1/2 years in, my sleep and allergy are improving slowly but steady. BTW I have another 1 1/2 years on my shots and hope to improve more.
Sorry I can’t help more than that.
CPAP is a journey like “The Wizard of Oz”. It’s a long slow journey. You will face many problems and pick up many friends along the way. Just because you reach the poppies, it doesn’t mean you are in Kansas.
The first question that came to my mind after reading your post is have you seen an urologist? I would imagine that waking 3-4 times every night to use the restroom is a significant contributor to your daytime fatigue.
You don't sound as if you are confident that asthma is the correct diagnosis, after reading your post a few questions came to my mind.
Did you have a lung function test?
Did your doctor prescribe a rescue inhaler, and if so does using it alleviate your symptoms?
It does take some time for the daily inhaler to build up in your system, but it has been my experience that within a couple of weeks some level of relief is typically felt.
Good luck to you!
In both charts, the total session times are about 6.7 hours, so the first observation is that you are not giving yourself enough time to sleep and get the rest you need. If your sleep times are accurate, your are going to bed between 3:00 and 4:00 AM. Is that right? I see a couple clusters of restricted breathing, that suggest you might do better with slightly higher pressure, or soft cervical collar. If your airway tends to restrict when your chin drops to your chest, that is probably the culprit.
Medically, there are a lot of possibilities, but a short duration of sleep, poor sleep hygiene and possibly a positional issue could be easy fixes.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
(08-27-2018, 01:01 PM)Rcgop Wrote: Don’t rule out allergies either. I started allergy shots the exact time as CPAP. My Dr. is an allergy/asthma specialist. My progress for both have been along the same time table. Allergies can lead to asthma. It took close to a year to get relief from my allergy and get my sleep acceptable. Now after 2 1/2 years in, my sleep and allergy are improving slowly but steady. BTW I have another 1 1/2 years on my shots and hope to improve more.
Sorry I can’t help more than that.
Thanks for the response, I do have hayfever and have since childhood. Recently I got an air purifier recommended by Asthma UK and I've been trying to pay attention to when I open the windows due to the pollen count. I also added a fine filter to the CPAP machine. I have noticed that my nose is blocked much less, and I don't sneeze as much, but as far as sleep no real change.
(08-27-2018, 03:06 PM)ColoradoMom Wrote: The first question that came to my mind after reading your post is have you seen an urologist? I would imagine that waking 3-4 times every night to use the restroom is a significant contributor to your daytime fatigue.
You don't sound as if you are confident that asthma is the correct diagnosis, after reading your post a few questions came to my mind.
Did you have a lung function test?
Did your doctor prescribe a rescue inhaler, and if so does using it alleviate your symptoms?
It does take some time for the daily inhaler to build up in your system, but it has been my experience that within a couple of weeks some level of relief is typically felt.
Good luck to you!
I think that I did have a lung function test when I originally went through the circuit of ENT, Sleep Doctor, Oximetry and so on and again recently. My Sleep doctor said that my Spirometry results were lower than he'd have liked the first time round. I think the second time (before any medication) the results were better. I don't have a rescue inhaler. I haven't seen an urologist, maybe this is something to discuss with a GP. Thanks.
(08-27-2018, 03:37 PM)Sleeprider Wrote: In both charts, the total session times are about 6.7 hours, so the first observation is that you are not giving yourself enough time to sleep and get the rest you need. If your sleep times are accurate, your are going to bed between 3:00 and 4:00 AM. Is that right? I see a couple clusters of restricted breathing, that suggest you might do better with slightly higher pressure, or soft cervical collar. If your airway tends to restrict when your chin drops to your chest, that is probably the culprit.
Medically, there are a lot of possibilities, but a short duration of sleep, poor sleep hygiene and possibly a positional issue could be easy fixes.
I excluded sessions shorter than 30 minutes in Sleepyhead, on Sunday I actually started using the machine at around 1:00 AM, but didn't get to sleep until 3:30 AM like you said. On Saturday I did admittedly get to sleep pretty late, but what I've found over the year+ I've been using the machine is that if I go to bed at 10pm or 11pm or so, I will still wake up exhausted but then go back to sleep because I have time before work. I work the late shift so I don't actually need to be up until like 11 AM. I do wish I could go to sleep and get up earlier but it is awful having to try to stay awake with my usual fatigue for 3 hours doing nothing before work. At least if I wake up later then I have work to keep me awake. Also worth mentioning that working the "normal" shift (8:00 AM - 5:00 PM) hasn't made a difference in the past.
I should also say that after the first two awakenings, the subsequent awakenings are more frequent (with or without CPAP). Sometimes I sleep for as little as 40 minutes before awakening. I have tried sleeping with the machine regardless for 8 even 9 hours (with 3-4 interruptions) but there doesn't seem to be a difference. Anyway tonight I will use it for the entire time, include the short sessions and post the results. Regarding the restricted breathing, I could increase the pressure but I'd probably have to increase C-Flex. Not sure what to do? I think there is some restriction when my chin drops, it would be great if I had some footage of my sleep to see my positioning but still looking into cameras right now. Still, I will look into the collar, might be worth a try.
While writing this I thought about the last few months and there were I think two days or thereabouts where I slept 6 hours before awakening. I did feel better on those days.
Well it seems we may have another sleeper like I was.
First understand that all medical cares is that AHI is below 5 because then you are considered "treated". They treat patients, they don't help them get restful sleep
Next you are not getting restful sleep. During the first 4 hours or so any are getting rid of you tired state and then you get to the point where you are roused easily. It can be to go to the bathroom or about anything else like thinking about anything that catches your attention, noises.... you are rested enough to be roused. this means you are not getting deep sleep or REM sleep and these are the whole reason that we sleep.
There can be several reasons why you are not getting restful sleep.
One for me with that heavy feeling when I laid down, I had sleep apnea with COPD riding on top of it. inhaler for COPD took care of that and then adjustments to the machine did the rest (all helped from people on this forum (sleepRider and a few more)).
I had to increase the minimum pressure as high as I could stand 4.0-6.4 and that helped. I had to increase the time my machine allowed me to inhale 2 seconds to 3+. I had to make the machine much more sensitive to when I started to inhale, 2 levels more sensitive. I had to make it one level less sensitive to when my inhale was over.
Result-most nights I only get up once and wake refreshed and awake and happy.
I used ResMed AirCurve so I can't help with how to adjust your machine, but I am sure it can be done and that there are people here that do know you machine
PoolQ's post is a very good example of why bilevel can be so helpful. It can improve the ventilation rate and affect the timing and be adjusted to change the sensitivity for trigger (inhale) and cycle (exhale). Bilevel can unload the effort of respiration for people that need it, and be much more comfortable for those that don't. The Philips Respironics machines are true CPAP and the Flex does not act like bilevel, in spite of the appearance of an IPAP and EPAP pressure in Sleepyhead graphs. The Resmed Airsense 10 series does provide bilevel pressure with up to 3-cm of pressure difference between IPAP and EPAP, and any of the bilevels provide much more if needed. The pressure changes follow your respiratory lead, unlike Flex which predicts and precedes it. The feel is much different, and for some, it really makes the difference in getting to deeper more restful sleep. Unfortunately, it can be hard to have such "comfort" needs covered by insurance. I purchased my first bilevel as a used machine and found it worked better for me. Ultimately I was able to persuade my doctor to prescribe bilevel on the basis of the improved treatment and sleep I got.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
(08-27-2018, 09:54 PM)PoolQ Wrote: Well it seems we may have another sleeper like I was.
First understand that all medical cares is that AHI is below 5 because then you are considered "treated". They treat patients, they don't help them get restful sleep
Yeah, I suspected that might be the case, just, it is a bitter thing to swallow when you don't have anywhere else to turn to. Trying to advocate for yourself when you're exhausted all the time is insanity. The very symptoms that lead you to seek help also make it difficult to seek help.
(08-27-2018, 09:54 PM)PoolQ Wrote: Next you are not getting restful sleep. During the first 4 hours or so any are getting rid of you tired state and then you get to the point where you are roused easily. It can be to go to the bathroom or about anything else like thinking about anything that catches your attention, noises.... you are rested enough to be roused. this means you are not getting deep sleep or REM sleep and these are the whole reason that we sleep.
This makes sense. The only explanation for why it is consistently 4 hours that I wake up would be something involving sleep cycles.
(08-27-2018, 09:54 PM)PoolQ Wrote: One for me with that heavy feeling when I laid down, I had sleep apnea with COPD riding on top of it. inhaler for COPD took care of that and then adjustments to the machine did the rest (all helped from people on this forum (sleepRider and a few more)).
This is interesting. I've heard of COPD before but I've always kind of ignored it. Apparently it can occur if you've been exposed to dust, fumes or chemicals? All three apply in my case potentially. On the other hand I don't have a cough, is this something you suffer from? As far as other common symptoms, I do get quite breathless with exercise, but the problem with this has always been that...well...isn't that what you'd expect? Hard to compare my experience to others. I'm overweight, but at the same time I exercise often and until recently did a lot of resistance training. I've never smoked. Never been able to come to a conclusion about this. I do have sneezing fits every now and again but that could be due to my Hayfever or just mundane dust exposure.
(08-28-2018, 07:59 AM)Sleeprider Wrote: PoolQ's post is a very good example of why bilevel can be so helpful. It can improve the ventilation rate and affect the timing and be adjusted to change the sensitivity for trigger (inhale) and cycle (exhale). Bilevel can unload the effort of respiration for people that need it, and be much more comfortable for those that don't. The Philips Respironics machines are true CPAP and the Flex does not act like bilevel, in spite of the appearance of an IPAP and EPAP pressure in Sleepyhead graphs. The Resmed Airsense 10 series does provide bilevel pressure with up to 3-cm of pressure difference between IPAP and EPAP, and any of the bilevels provide much more if needed. The pressure changes follow your respiratory lead, unlike Flex which predicts and precedes it. The feel is much different, and for some, it really makes the difference in getting to deeper more restful sleep. Unfortunately, it can be hard to have such "comfort" needs covered by insurance. I purchased my first bilevel as a used machine and found it worked better for me. Ultimately I was able to persuade my doctor to prescribe bilevel on the basis of the improved treatment and sleep I got.
Both PoolQ and your post have both given me a bit of hope, everything you two have said makes sense, but the path will not be easy it seems. As far as my thoughts go, the logical thing to do would be to try the cervical collar and failing that, seek either an APAP or a BIPAP machine. Or maybe buy an APAP machine regardless, it seems to be highly regarded around here for the long term. Problem is that trying to convince the NHS, or my Doctor at least that it would be worth trying seems like an impossible task. Certainly going to my Doctor is probably a 0% chance, even contacting his secretary is a pain. The only options would then be to maybe write to the hospital or him directly, go private, or purchase the machine outside the medical system altogether. Still, just looking, APAP and BIPAP are very expensive.
Any advice? I mean, I promised myself some time ago that I'd be willing to spend the money if I needed to, but I want the best value if possible. Should I write to my hospital or Doctor? Should I go private? What kind of prices am I looking at?
I also have last night's data. Pressure: 10.5, C-Flex: x2
you've been exposed to dust, fumes or chemicals and I did smoke. no cough. They measured my lung capacity and then again after inhaler, it had an impact so they said COPD. With the daily treatment I can again lay on my back.
I would go right to BIPAP. there are places that sell used ones. I use the Air Curve by Resmed. for sure try the collar first. Also try every setting on the one you already have just to make sure it's not the humidity setting that is causing you discomfort
