Still having problems

[sleepyUK]

I'm over a month in and some things are easier but there are still persistent problems. I have just sent back the SD card to the provider to assess my progress. My main issue is that I drive public service vehicles and cannot resume work until cleared. My compliance rate has dropped off from six hours a night at first to about 2 now. The dry mouth is cured with Biotene Gel and Glandosane spray. My main issues are still the warm air sensation around my mouth in the mask and later in the night when I have woken up and readjusted things the mask pressure seems very low and I feel I'm not getting enough air. I've reset the starting ramp pressure to 6cmH2o which helps when I first use the machine and is quite tolerable and pleasant, but when I restart the machine later after waking the pressure seems non-existant. I have downloaded sleepyhead and downloaded the results but not sure how to post them here. One thing that struck me as odd was that Sleepyhead said that the Humidifier was switched on (setting 4) and hose temp set for 19. I use neither. The water tank is not attached (not supplied) and the hose I think is normal, not heated. Could this be why the air feels warm in the mask?? I do now have a water tank but haven't used it because the gels work and I don't like warm, humid air in the mask so I'm afraid the humidifier would make things worse in that respect. The weather has been relatively hot and humid here and my room temperature is usually +89 degrees F and 70+ humidity. This is very unusual for Uk and so I don't think this has helped as the mask feels really sticky and clammy. Finally, when I have managed to persevere and fall asleep with the mask I wake every hour and 15 mins like clockwork. Sometimes I manage to eventually get back to sleep, other times this is when I take the mask off and drop back to sleep for the rest of the night without waking. the times I have persisted in using the machine I wake up feeling worse than before therapy because I have woken up so many times. As I've said before I do have anxiety and had some degree of insomnia before. I would wake 2-3 x night due to spinal pain from an old spinal fracture which is normal for me but I was used to this and could have a drink, rollover and go straight back to sleep without hardly waking up. Now when I wake up I have to take the mask off, sit up put the light on have a drink then reattach the mask and reset the machine so I'm virtually fully awake agiain, then have to try and fight the machine to get back to sleep. The nights I haven't used the machine have been bliss, waking once or twice and having a nice comfortable deep sleep and waking up feeling normal and ready to start the day. When I've used the machine I wake up with a headache, snooze several minutes before getting up, fall asleep sitting on edge of my bed and sometimes even standing in the bathroom while cleaning my teeth and having a shower. I've fallen asleep eating breakfast (literally with food in my mouth) and spilt numerous drinks down my front and lap while sat watching tv. I had no issues of drowsiness or sleepiness before treatment and diagnosis except occasionally waking with a headache which is why I was referred. This seems crazy and back to front as I now feel like I would be a danger driving if I were allowed whereas I hadn't any issues before, even long distance night driving. It is so frustrating as it seems the treatment is giving me problems I didn't have. Catch 22 if I stop CPAP I can't get my license or driving insurance back even though I was safer without itreatment.

[zonker]

hello. i won't quote all of that back at you. someone will be along shortly to address your problems and give you good and sound advice.

i'm posting to let you know about sleepyhead and posting and such. have a look around the forum until you run across palerider. believe me, he's easy to find. gabby soul. at any rate, at the bottom of his posts you will see a series of links about sleepyhead, how to organize the charts and how to post here.

actually the how to post here is outdated as we now have the ability to do attachments.

good luck!

[Pugsy]

One thing that struck me as odd was that Sleepyhead said that the Humidifier was switched on (setting 4) and hose temp set for 19. I use neither. The water tank is not attached (not supplied) and the hose I think is normal, not heated. Could this be why the air feels warm in the mask??

Ignore what SleepyHead says you have attached when you obviously don't. It's a known bug in SH...doesn't always report the settings with humidifier used or not used accurately.

The heated hose is visually a lot different from a non heated hose.
It looks like this and has a special plug in thing to plug into the back of the machine.
https://www.cpap.com/productpage/resmed ... ve-10.html

and the ResMed non heated hose looks like this
https://www.cpap.com/productpage/resmed ... ubing.html
or it might just be a plain generic gray non heated hose from some manufacturer.
https://www.cpap.com/productpage/9-ft-1 ... -ends.html

If you are using a non heated hose...there is no way at all for the warmth to be anything but related to your own exhaled breath.
Despite what SH might be reporting for hose/humidifier or air temp.

[palerider]

*wall of text*

I'm sorry, my brain just can't handle that wall of text, May I politely request paragraph breaks next time?

[Pugsy]

I also had a problem comprehending the massive wall of text in one paragraph. My mind just can't handle it.

If the OP wishes...I would be happy to go in and edit that massive paragraph to make it more easily read and understood.
I won't do it unless OP tells me to though.
I wouldn't do any big changes in the text though...just break up the wall with some well place paragraph indents.

[rick blaine]

Hi sleepyUK,

I agree that you could break your post up into shorter paragraphs. But much more important: what do you want from people here?

1. You said on the 18th June, 2018 that a humidifier tank was on its way from the sleep medicine department in Leeds. Has it not arrived?

The reason I ask is that you say today that, "The water tank is not attached (not supplied) and the hose I think is normal, not heated."

Then a few words later today, you add that, "I do now have a water tank but haven't used it because the gels work" – and I assume by that you mean the proprietary mouth gels you get from the chemist (US: pharmacy).

But if you haven't tried the humidifier - even at a low setting, or at 'cold pass' setting - then how do you know it won't do the job better than the gels?

2. There's something not quite right about your story. You say your initial AHI was assessed at 77.7 But today you say that recently, "The nights I haven't used the machine have been bliss, waking once or twice and having a nice comfortable deep sleep and waking up feeling normal and ready to start the day."

Er, those last two sentences just don't go together. People with an AHI of 77 don't have deep sleep. They have one interruption lasting 10 seconds or more every minute.

3. As I said, I don't know what you want help with - assuming you do want help, and not just to feel better from telling your story. You may have more of a load to bear than the average patient - the childhood stuff, the back pain – but IMO you have to find a way out of the loop you say you're stuck in.

IF the biggest single problem you have is a phobia of warm air near your mouth and face - and IF that stops you adjusting and adapting to the CPAP treatment you've been told you must have - and IF, until you meet the DVLA's standards, you don't get to drive - then why aren't you heading straight for the Havening treatment I suggested?

Said treatment is very effective for phobias - including the one you describe.

And the treatment is usually just one or two sessions. And it is available to you within a reasonable travel distance.

Even in the rare eventuality that it turns out not to work for you, you would at least have done something.

That's the best advice I can give you today. What you do with it is up to you.

[HoseCrusher]

I'm over a month in and some things are easier but there are still persistent problems.

I have just sent back the SD card to the provider to assess my progress. My main issue is that I drive public service vehicles and cannot resume work until cleared. My compliance rate has dropped off from six hours a night at first to about 2 now.

The dry mouth is cured with Biotene Gel and Glandosane spray.

My main issues are still the warm air sensation around my mouth in the mask and later in the night when I have woken up and readjusted things the mask pressure seems very low and I feel I'm not getting enough air. I've reset the starting ramp pressure to 6cmH2o which helps when I first use the machine and is quite tolerable and pleasant, but when I restart the machine later after waking the pressure seems non-existant.

I have downloaded sleepyhead and downloaded the results but not sure how to post them here. One thing that struck me as odd was that Sleepyhead said that the Humidifier was switched on (setting 4) and hose temp set for 19. I use neither. The water tank is not attached (not supplied) and the hose I think is normal, not heated. Could this be why the air feels warm in the mask?? I do now have a water tank but haven't used it because the gels work and I don't like warm, humid air in the mask so I'm afraid the humidifier would make things worse in that respect.

The weather has been relatively hot and humid here and my room temperature is usually +89 degrees F and 70+ humidity. This is very unusual for Uk and so I don't think this has helped as the mask feels really sticky and clammy.

Finally, when I have managed to persevere and fall asleep with the mask I wake every hour and 15 mins like clockwork. Sometimes I manage to eventually get back to sleep, other times this is when I take the mask off and drop back to sleep for the rest of the night without waking. the times I have persisted in using the machine I wake up feeling worse than before therapy because I have woken up so many times. As I've said before I do have anxiety and had some degree of insomnia before. I would wake 2-3 x night due to spinal pain from an old spinal fracture which is normal for me but I was used to this and could have a drink, rollover and go straight back to sleep without hardly waking up. Now when I wake up I have to take the mask off, sit up put the light on have a drink then reattach the mask and reset the machine so I'm virtually fully awake agiain, then have to try and fight the machine to get back to sleep.

The nights I haven't used the machine have been bliss, waking once or twice and having a nice comfortable deep sleep and waking up feeling normal and ready to start the day. When I've used the machine I wake up with a headache, snooze several minutes before getting up, fall asleep sitting on edge of my bed and sometimes even standing in the bathroom while cleaning my teeth and having a shower. I've fallen asleep eating breakfast (literally with food in my mouth) and spilt numerous drinks down my front and lap while sat watching tv. I had no issues of drowsiness or sleepiness before treatment and diagnosis except occasionally waking with a headache which is why I was referred.

This seems crazy and back to front as I now feel like I would be a danger driving if I were allowed whereas I hadn't any issues before, even long distance night driving. It is so frustrating as it seems the treatment is giving me problems I didn't have. Catch 22 if I stop CPAP I can't get my license or driving insurance back even though I was safer without itreatment.

When you post your data we may be able to suggest how to avoid the perception of low pressure when you start back up in the middle of the night.

[Okie bipap]

Have you tried turning the ramp off? Unless your pressure is pretty high, you may not need it. I don't use ramp at all, but use the mask fit function. That gives me three minutes to get into bed and get settled before my treatment starts. This also gives me a chance to check my mask fit at my maximum pressure (20 cm).

[sleepyUK]

Firstly, thanks for the replies. They are much appreciated.
Secondly, apologies for the rant. I have Asperger's Syndrome, so when I get frustrated my thoughts often just pour out in a tidal flood and it isn't easy to organize them, but if I try to break the flow to organize they get jumbled. I hadn't intended for it to pour out like that, I had written myself a few points, but in the end I guess the frustration got the better of me.

I will follow up the leads on Sleepyhead and try to download the data.

I am trying not to keep overloading with more background and keeping to the point of the apnoea, but somethings do overlap. I have partly followed up the lead on Havening technique, but I am also in the process of packing and moving house which is stressful and physically and emotionally difficult. My counsellor has been looking into local leads, but it does make sense to put the effort into this. I do have a water tank now, but I thought that the humid, warm air was the main problem, then having more would make the problem worse. But, I won't know until I try, so will set it up this week.

The points made about the AHI and sleep quality are interesting because I also cannot understand this. I was really amazed when I got the results of the sleep test and they told me the results. I couldn't believe the AHI being over 70. That night, I thought I had had a particularly good sleep as I only woke once with discomfort and slept a full six hours without waking. I'm not sure about sleep patterns, but before treatment, I had dreams most nights, many of which I could remember on waking. Most were normal dreams but I also experienced nightmares and some particularly distressing dreams where I believed someone had broken into my house and was coming up the stairs and into my bedroom. When I woke I often couldn't tell if the dream was a dream and often thought it was real and almost called for the police several times. I thought dreams only occur during deep sleep, but I don't have an in-depth understanding of the sleep process. If dreams do mostly occur in deep sleep and the night I had the sleep test I had several dreams and slept soundly, I was quite shocked that the test revealed such severe apnoea.

During treatment, I have not managed deep or sound sleep with the machine. I wake about every 75 minutes and take about 30 minutes to then fall back asleep. This is unusual for me as I did manage to fall back to sleep almost instantly after waking before using the machine, most times not really fully waking. This, I believe has made me feel more sleepy and tired during the day, which I did not have before. Before treatment I occasionally dozed while watching inane TV shows at night, but nothing else. I did wake with hang-over like headaches some mornings which is why my General Doctor referred me for the sleep study (not expecting it to be positive, but merely to rule out on the diagnostic workup). Unusually, the hang-over like headaches seemed to occur more when I had thought I had had a particularly deep sleep and not been aware of waking the whole night, which did often a few times a week before using the machine.

The sleep test was a single night. I collected the equipment in the morning from the hospital and then set it up myself before going to bed. I had many problems. Firstly the nasal cannula kept coming adrift and the tubing got all wrapped up, so I ended up not using it. I am a mouth breather so wasn't sure if it would work anyway. The straps around my chest and stomach were fastened with very well used "velcro" and kept coming loose or coming undone. Most of the time when I woke they had moved out of position. The leg sensors dropped off repeatedly. I was sure they would have said the test didn't show up any reliable data, but they said it was o.k and everything had worked fine.

The other unusual thing was the pulse-ox meter showed constantly low O2 sats, even when I was sat comfortably watching t.v. in the morning. It never went above 94% while watched it and often fell below 89% even while watching t.v. and breathing normally. Most online guides have said these readings are low for normal activity. When I mentioned it to the Consultant, he dismissed it and put another meter on my finger which showed 94% in his office, but he said that was quite normal for someone who was anxious. My work colleagues (in my "day job" as an Optometrist) noticed some instances when I would be awake but seemed to be not "with it". They reported slurred, incoherent speech and that I had a dazed look and often tried to undo my tie and shirt collar. They said I also looked "clammy". I had EEG and ECGs all of which were normal. The Doctors put these episodes down to the opioid medications I was taking for the spinal pain at the time, so I was weaned off these (not a bad thing) and had CBT for a while. Heart problems do run in the family so this was scary.

I have wondered how accurate the sleep study and diagnosis were given the problems with the test equipment. It also just doesn't make sense that I had no sleepiness before unless I had had a poor night when I was kept awake by pain or insomnia/anxiety. My Epworth score before treatment was 7.

As I said in the post before, if I don't use the machine now, I fall asleep quickly. I usually wake once or twice in the first couple of hours due to discomfort, but then settle and usually have a solid 7-8 hours sleep without waking. I do sleep soundly as it takes a lot to wake me. I have two alarm clocks and often sleep through disturbances that would bother others, like roadworks outside the house, etc. I awoke feeling normal and got up straight away and had no problems.

The Biotene gel and Glandosane spray are now prescribed by my General Doctor to help with the dry mouth.

[raisedfist]

Your at-home sleep study sounds like it was quite an ordeal. Since you have an APAP, it may be worth a shot opening that baby wide open for a night - min pressure 5 or 6cm h2o depending on comfort, and 20cm h2o as the max. Then, use the links in Palerider's signature in order to capture and post your data so we can see what's going on and hopefully provide some help.

Regarding any claustrophobia, humidity or comfort issues, have you ever trialed a nasal/nasal pillow mask? You may be a mouth breather, but sometimes with therapeutic pressures set people find they are able to breathe just fine through their nose. I was told in the sleep lab that I would need a FFM but I actually find it less comfortable and harder to seal when using higher pressures.

[zonker]

Regarding any claustrophobia, humidity or comfort issues, have you ever trialed a nasal/nasal pillow mask? You may be a mouth breather, but sometimes with therapeutic pressures set people find they are able to breathe just fine through their nose. I was told in the sleep lab that I would need a FFM but I actually find it less comfortable and harder to seal when using higher pressures.

to the original poster-i just wanted to chime in and support what raisedfist said. before i started this cpap venture i was convinced that i was a mouth breather as well. but, i have a beard that i have had for 35 years and had read a lot about how one couldn't get a good seal with that or a nasal mask. yet i really didn't want to shave that beard!

i tried a full face mask, a nasal, a full face again and then just decided to do the P10, which is what raisedfist is using. i could never get those other masks to work due to too much leakage.it wasn't an easy proposition as it took the longest time to get it right. but now that i'm used to it, it's the best for me.

and that last bit is the tricky part. what works for me may not work for thee. i'm not saying that if you tried nasal pillows, everything would work out fine for you. it's just something to consider, is all.

[HoseCrusher]

It sounds like the machine scored you with an AHI of 70. Sometimes looking at the raw data can shed some additional light on if this is a correct score.

It also seems your pulse oximeter is showing lower levels. You can double check the results by picking up a unit of your own and tracking your oxygen levels to see what is going on. You can double check the accuracy of your unit by dropping by the emergency clinic and doing side by side comparisons with calibrated units.

Adapting to the use of a CPAP machine can be difficult but if you have a reasonable perspective and practice you may find it less difficult. It is not easy, but manageable.

While your home study seems a little questionable, you need to start somewhere. The idea is to treat the symptom and enjoy the quality of life improvement.

The morning after you sleep do you jump out of bed ready to greet the day? The morning after you sleep using a CPAP do you jump out of bed ready to greet the day?

Post some data and let's see if more specific help can be offered.

[sleepyUK]

Hi,

Again, many thanks to those who have taken the trouble to reply and offer help.

I've tried to attach the files from my machine's SD card which I uploaded via Sleepyhead. This is the only file that would attach.

With regards to nose masks. I did try (very briefly) nose vs full face masks when I was being given the APAP machine by the hospital, but this was only for a few seconds. They do not give extended trials of each type (i asked as I thought it would be best to try each "in situ" before deciding) but they don't allow this on cost grounds (my treatment is government funded in UK). The cost of the masks is a bit prohibitive at £200 to try. I think I might manage to nose breath with clinical pressure, as I do manage it a lot of the time when relaxed and not focused on my breathing. I think the problem started from an injury I had as a child (an untreated broken nose (bridge) which they grew crooked).

Interestingly, since writing about how I didn't feel sleepy despite apparent severe apnoea, I have subsequently been made aware of research in Japan which showed over 80% of people with AHI>40 did not report sleepiness as a symptom. The researchers interpreted this (I believe from the summary given) as being due to chronic sleep deprivation which has been habitualized as normal. I believe the research was by Prof. Takeshi Tanigawa (Juntendo University).

I'm not sure I'd agree with their interpretation because I certainly have felt very sleepy and have inappropriately fallen asleep while using the machine, whereas before treatment I did not. I would have assumed that if I had habitualized to the tiredness I would not be so sensitive to the perceived changes when starting therapy? I still feel much more refreshed and ready to go when I haven't used the machine, and extremely fatigued many days when I have (as I said to the point of falling asleep sitting on the bed before standing and falling asleep while chewing when eating breakfast) This never occurred before using the machine. To me, this is because I wake more frequently and for longer (at the moment) when using the machine. Without the machine I fell asleep with a few minutes, woke a couple of times within the first couple of hours with back pain and then usually managed to sleep the rest of the night (8 hours) without waking.

The only times I felt tired before treatment was when the pain or anxiety kept me awake or I had depression and had difficulty falling back to sleep if I woke in the early morning, but I clearly knew there was a reason for feeling tired and sleepy. Again, if the lack of perceived sleepiness is due to habitualization it doesn't make sense to me that I could be aware of the tiredness on other occasions.

I don't have access to the sleep study data, unfortunately.

Finally, I am not sure what is counted as good compliance in terms of usage times. The Japanese study quoted the device must be used at least four hours per night to be effective. This seems a little low to me, but encouraging, as I am currently averaging around 2-3 hours again. I would be quite pleased to manage a consistent four hours. I did manage over six hours the first few nights I used the machine, with a great deal of will power and hardly falling asleep at all.

Many thanks again for the help and encouragement.

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