Sleep Apnoea Forum Bringing Help + Support to the Patient
My Apnoea / CPAP journey
Hi all,
Apologies in advance for the long thread!
I'm 51 and always suspected I had apnoea, but didn’t like the sound of CPAP so never did anything about it. This was despite never feeling like I had slept well, even as a child (always very active and sporty; I just pushed on through the tiredness and 'got on with it').
Always been a heavy snorer, too. Not overweight, don't smoke, and very rarely drink.
That ability to carry on seemed to leave me a couple of years ago, and the day time fatigue just got too much. I drive alot for work, and was noticing I was a danger of falling asleep at the wheel on longer journeys. I was also nodding off in the office, and felt I couldn't focus properly.
Fast forward to Jan '23 and I went to my GP. He very confidently stated that I could not possibly have Apnoea as I am not overweight. It took several months of me essentially hassling him for him to relent and refer me on to a sleep clinic.
They tested me, and it turns out I do have mild to moderate apnoea (15 an hour), and was put on a waiting list for a mask. That took a few months to arrive, and I have been using a Philips Dream Station for a few months now, with a full face mask (mouth breather at night).
At first, I couldn't even go to sleep with it on. It just felt totally alien to me. I didn't like the sensation of the air being forced into the mask. It took a few weeks for me to fall asleep with it on, but then I'd wake up in the morning with it on the floor, with no recollection of taking it off.
After a month or so, I could finally fall asleep with it on, and most nights, it stayed on. But, I kept being awoken by the coldness of the air, and by dehydration. The sleep clinic eventually gave me a humidifier, but this took a month or so. I also bought myself a heated hose.
I have this set up for around a month now, and I am not getting any quality sleep at all. In fact, I feel worse than I did before I ever had a CPAP. I am routinely falling asleep during the day now. As soon as I stop for more than 10 minutes, I fall asleep. I feel drunk every day.
I've been signed off work for 4 months now and am getting very anxious about that. Also very worried about being asked to surrender my driving licence by the DVLA (my understanding is they will after 3 months of unsuccessful treatment; I'm close to this time frame already).
My issues with the mask etc is that it is just really uncomfortable to me. I really don't like the feeling of a mask on my face. I tend to move alot at night, and regularly change my sleeping position. This means that the mask hose often gets wrapped around my neck, and I am waking up alot wrestling with it.
I try to sleep on my side, but find that if I am not lying on the very edge of my pillow, the pressure of my bodyweight on the mask and pillow means that I lose the seal on the mask and the sensation and noise of the escaping air also wakes me up.
I have always been a light sleeper, but this mask is really not working for me. The noise, sensation etc etc are all too much for me it seems.
Good news is the mask is reducing the number of apnoea (from 15 to between 4 and 6 per hour) but it now seems that I'm not sleeping due to the mask.
I have a smart watch that tells me that the most continuous sleep I get is 1 hour. I may get 2 or 3 of these a night. The rest is 20 to 40 mins here and there. Some nights I don't even get 1 hour.
I have told the sleep clinic all this, and they just tell me I will get used to the mask eventually; they say this may take 6 months.
They have referred me on to another specialist for an overnight hospital assessment, but not sure what this will achieve. I think CPAP is the gold standard in treatment? I have all the kit they can give me.
Not sure what else I can do.
As it stands, my life is on hold, and I feel dreadful. As I say, worse than before I started the treatment.
Any advice, support or insights will be gratefully received.
Thanks in advance.
Dave
Views: 148
Replies to This Discussion
-
Permalink Reply by Alex Lalvani on
-
Hi Dave,
Just read your story, sorry to hear your woes. I've been diagnosed with severe sleep apnoea but been told it's 11 months before I can get a CPAP machine. I'm considering buying one privately as I wake up several times a night and am sleepy all day. Luckily I don't drive although I'd like to keep my license in case I did ever need to.
In your case couldn't you go back to the consultant and explain that you're actually worse off now? I would take up the overnight assessment, they might find something else.
Sorry I can't be of more help, new to this myself
Alex
-
-
I was a mouth breather, but was given a nasal mask, and had to keep my mouth shut!(*) I did try a chin strap to keep my mouth shut but I couldn't tolerate it. I would say I got used to the nasal mask very quickly. I was probably mouth-breathing because of the apnoeas. The original nasal mask was a big hard plastic thing. These days I have a mask which sits under my nose. I also use a fabric mask (which I purchased myself) which is very easy to get along with (but a bit more prone to leaks). Over time, my throat has changed, and I can even talk (a bit gutturally!) when I am using the nasal mask.
So may be it would be worth investigating a different model of mask (not necessarily a nasal one). I also have an 18" super-flexible hose extension which probably helps me. Good luck!
(*) My dentist was astonished at how my dental hygiene improved once I was no longer mouth breathing.
-
-
Hi Alex,
I have fed back to the sleep clinic, and they refered me onto a spcialist who does want me in overnight. There's a 6-9 month waiting list for that though!
I am going to push my GP for an ENT appt I'm the meantime, to see if there's any mileage in that.
I have a hybrid mask now, but I am no further forward with it. It's just uncomfortable in a different way and still exhausted all the time.
I truly hope you find some relief with your CPAP.
Alex Lalvani said:Hi Dave,
Just read your story, sorry to hear your woes. I've been diagnosed with severe sleep apnoea but been told it's 11 months before I can get a CPAP machine. I'm considering buying one privately as I wake up several times a night and am sleepy all day. Luckily I don't drive although I'd like to keep my license in case I did ever need to.
In your case couldn't you go back to the consultant and explain that you're actually worse off now? I would take up the overnight assessment, they might find something else.
Sorry I can't be of more help, new to this myself
Alex
-
-
Hi Jonathan,
I have a hybrid mask now, but it's not helping.
I did see my dentist yesterday for a rouitne checkup and mentioned the apnoea; weirdly, he said has been researching it as friends have it. He has suggested a mandibular device to stop my lower jaw collapsing backwards. At this point I will try anything!
I really struggle to breathe through my nose at the best of yimes so not sure a nose mask will be suitable.
I'm going to ask my GP for an ENT referal though, as yhere may be a perfect storm going physiologically; as I say, I'll take anything right now to get some relief. I'm shattered.
Jonathan said:I was a mouth breather, but was given a nasal mask, and had to keep my mouth shut!(*) I did try a chin strap to keep my mouth shut but I couldn't tolerate it. I would say I got used to the nasal mask very quickly. I was probably mouth-breathing because of the apnoeas. The original nasal mask was a big hard plastic thing. These days I have a mask which sits under my nose. I also use a fabric mask (which I purchased myself) which is very easy to get along with (but a bit more prone to leaks). Over time, my throat has changed, and I can even talk (a bit gutturally!) when I am using the nasal mask.
So may be it would be worth investigating a different model of mask (not necessarily a nasal one). I also have an 18" super-flexible hose extension which probably helps me. Good luck!
(*) My dentist was astonished at how my dental hygiene improved once I was no longer mouth breathing.
About
Sleep Apnoea Forum
New to the Sleep Apnoea Forum?
1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!
Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.
Latest Activity
"I would always be guided by Dr Vik Veer, who is the UK's leading ENT surgeon specialising in snoring, sleep apnoea and UARS. He doesn't say the exercises will cure moderate to severe sleep apnoea, but can help by strengthening the airway…"
"Good info thanks. I personally prefer nasal strips though."
A tale of two nasal dilators
Trying to get my nose to stay open, I've been experimenting with nasal dilators.So far I tried two types.- Generic tubes from ebay, 50p each- Fancy Airmax £10Both are moulded silicon rubber.I would say the packaging for the Airmax, which is really…See More
"Dab hand with a sewing machine :) The "stethoscope" pipes were detachable with a bit of careful persuasion."
"How did you fasten it?I suppose you could do it with tape or elastic bands. Cut up an old fleece jacket, wrap it round the tube, strap it up, bit of velcro. That sort of thing. I hadn't really thought of that."
"Come to think of it you could likely double up a hose cozy, one over another.This is a piece of N95 face mask I used for high grade filtration. I just put it where the filter usually goes.This is around 6 months dirt I would say, thereabouts. I used…"
"Neat clip for your hose!
I used to use the Respironics Comfort Curve one of the best masks ever, now discontinued of course. With its stethoscope-style tubing, I had to make my own fleecy cover."
"Oh cool. Did you do any other DIY mods?I made a clamped strap to go on the headboard and lift the tube. Just a spare c-clamp with a bit of nylon strap and a clip but works well."
"Yes, I bought some fleecy material and made my own "snuggle hose" 10+ years ago. "
"Did you try a sleeve for the tube, Jonathan? For rain out? I got one off ebay for a few quid and I think it helps. It's a fleece sleeve you zip over the main tube."
Oropharyngeal exercises
I asked medics at the Castle Hill CPAP clinic about tongue and throat exercises. They said no evidence, and it can't work anyway because the muscles fully relax during sleep.Yet I'm watching Vik Veer, head of ENT at a London hospital, offer evidence…See More
"Well I found out what the norm was by asking my doctor to do the Cottle maneuver on herself, and she said there was no difference with and without.Whereas for me it's massively different.The Cottle maneuver is where you pull the skin by the…"
"It's a suspiciously round number I wonder how they arrived at it?I asked the People at Castle Hill and they didn't really enlighten me on it, but I was told that it's normal for people to have apnoeas, which I didn't know.I…"
"An apnoea or hypopnoea of less than 10 seconds won't be reported as an event, in the same way they're not reported on a sleep study, as that's the cut-off point."
© 2024 Created by The SleepGuide Crew.
Powered by
