Severe obstructive sleep apnea syndrome
Discussion
I work with a sleep clinic and set up the pulse oximeters that some trusts use to diagnose OSA before any consultations. Generally we tend to see that weight is a major factor in getting OSA, to the point where many bariatric patients here are referred for a pulse oximetry before any gastric bypass surgery takes place. Quite often bariatric patients end up on CPAP or with a mandibular advancement splint and attempt to lose a certain amount of weight before they are considered for surgery.
So yes, weight is a major contributor. Some people benefit from angled bed wedges (so they sleep more upright) but most of the patients we see benefit most from CPAP. Even as someone who works with a sleep team daily I'm amazed at how anyone can sleep with a CPAP machine, but I suppose the alternative is much worse.
If our NHS trust is to be believed, OSA is becoming much more common. In the last 10 years the number of patients we see a year has multiplied by 10, upto a few thousand now.
With any luck, the combination of losing weight (if needed) and CPAP should hopefully improve your sleep noticeably.
So yes, weight is a major contributor. Some people benefit from angled bed wedges (so they sleep more upright) but most of the patients we see benefit most from CPAP. Even as someone who works with a sleep team daily I'm amazed at how anyone can sleep with a CPAP machine, but I suppose the alternative is much worse.
If our NHS trust is to be believed, OSA is becoming much more common. In the last 10 years the number of patients we see a year has multiplied by 10, upto a few thousand now.
With any luck, the combination of losing weight (if needed) and CPAP should hopefully improve your sleep noticeably.
Simonium said:
Returned from my consultant's appointment at Treliske yesterday after having the diagnosis confirmed. "Exceedingly" Severe Obstructive Sleep Apnea. According to the consultant, my readings from the sleep test were extremely abnormal, especially considering I'm not overweight, don't drink or smoke or live particularly unhealthy. It is to do with a shortened jaw (and nasal congestion exacerbating the problem) and the only course of action is to go straight for the mask. On the scale of measurements (the unit of which I forget) where 30 is "severe" my reading was 73. I am now due to meet the nurses who deal with the mask etc to organise getting the treatment in place. Knowing this, I promptly returned home and had possibly the worst nights sleep I can recall, and in the pantheon of poor sleeping, that's going some. This is affecting me negatively in my daily life so anything that will help cannot come soon enough.
I had my jaw advanced to cure mine. Feel free to email me if you want to know about it, as I've just sent info to Lexi 1 too.OSA is a condition which is being taken much more seriously. There is very good evidence that moderate or worse OSA significantly increases your risk of a heart attack.
We see lots of OSA in ENT, its getting referred more and more to us. Surgery has a definite role for certain people.
We see lots of OSA in ENT, its getting referred more and more to us. Surgery has a definite role for certain people.
Well the diagnosis is confirmed and the SL1 form has been sent to the DVLA. I have not heard from the CPAP people about the machine or testing (the consultant said that my results were so abnormal that there is no point in trying anything other than CPAP), but things are in motion. I hope that the DVLA are lenient towards this sort of thing, but I guess they probably can't afford to be. Time will tell. I ought to tell my insurance company as well, and get the royal fleecing I'm no doubt due.
Groan!
Groan!
Fellow OSA sufferer here. I had immense problems even persuading my GP to investigate - ended up paying for a private sleep study which showed I stopped breathing in excess of 90 times an hour and my blood oxygen levels dropped below 70%!
They finally referred me to my local hospital (Colchester) who were utterly useless. I had another sleep study, but they told me it would be at least 4 weeks before someone could check the results, then over 18 weeks before I'd get a date for an appointment to discuss them.
Complained again and was referred to Papworth - 150 mile round trip, but worth it. Seen within a week for an overnight CPAP evaluation and discharged to be monitored.
I've since had a septoplasty and turbinate reduction and another sleep test. Now only have 60+ incidents an hour (normal should be less than 5).
So still on CPAP and attempting to lose weight. I'm seeing some improvements in my general health and wakefulness, but still not great. Awaiting an appointment with a consultant to review what is probably a problem with my jaw join (TMD) which reduces the amount of deep sleep I get every night.
As for driving - the sleep clinic advised to wait until I'd started CPAP, then let the DVLA know about my condition and treatment. They advised this procedure may vary depending on your level of daytime sleepiness (the Epworth Scale score). If you have high levels of daytime sleepiness, then it's OSA Syndrome, which is a major issue for the license. If you don't have daytime doziness, it's OSA and doesn't require notification under DVLA rules.
They finally referred me to my local hospital (Colchester) who were utterly useless. I had another sleep study, but they told me it would be at least 4 weeks before someone could check the results, then over 18 weeks before I'd get a date for an appointment to discuss them.
Complained again and was referred to Papworth - 150 mile round trip, but worth it. Seen within a week for an overnight CPAP evaluation and discharged to be monitored.
I've since had a septoplasty and turbinate reduction and another sleep test. Now only have 60+ incidents an hour (normal should be less than 5).
So still on CPAP and attempting to lose weight. I'm seeing some improvements in my general health and wakefulness, but still not great. Awaiting an appointment with a consultant to review what is probably a problem with my jaw join (TMD) which reduces the amount of deep sleep I get every night.
As for driving - the sleep clinic advised to wait until I'd started CPAP, then let the DVLA know about my condition and treatment. They advised this procedure may vary depending on your level of daytime sleepiness (the Epworth Scale score). If you have high levels of daytime sleepiness, then it's OSA Syndrome, which is a major issue for the license. If you don't have daytime doziness, it's OSA and doesn't require notification under DVLA rules.
Just going through the process of being diagnosed here, apparently I have 10-18 episodes per hour , not sure if that is good or bad
I went on holiday to Japan in August 2016 and came back with some kind of virus and subsequently pneumonia and had a rapid weight gain of around 2 stone, since then I have felt run down , tired all the time but not sleepy, I wake up a lot during the night and often struggle to get back to sleep, also get up to pee 4-5 times a night but most of all have been waking up with terrible headaches. I have been carb craving as well so have put more weight on. Spoke to my GP about the headaches and poor sleep this time last year and she put me on antidepressants and discounted sleep apnea but all the above symptoms seem to point to it.
I dont fall asleep during the day or in the chair, I dont often snore either.
I had a referral over Christmas to the hospital for severe asthma and they gave me a sleep monitoring device for two nights , hence the 10-18 times per hour report , going to see my GP at the end of the month but I'm annoyed this could have been picked up quicker
Terrified that I will lose my licence
Or that I will have issues getting insured. My HGV and PCV licences are due for renewal this year and I wont bother renewing them but I'll be devastated if I cant drive my cars
In the meantime i'm on a diet which isn't easy when you feel like crap and are craving sugar, but hoping if I can show a decent loss before the end of the month they will cut me some slack
I went on holiday to Japan in August 2016 and came back with some kind of virus and subsequently pneumonia and had a rapid weight gain of around 2 stone, since then I have felt run down , tired all the time but not sleepy, I wake up a lot during the night and often struggle to get back to sleep, also get up to pee 4-5 times a night but most of all have been waking up with terrible headaches. I have been carb craving as well so have put more weight on. Spoke to my GP about the headaches and poor sleep this time last year and she put me on antidepressants and discounted sleep apnea but all the above symptoms seem to point to it.
I dont fall asleep during the day or in the chair, I dont often snore either.
I had a referral over Christmas to the hospital for severe asthma and they gave me a sleep monitoring device for two nights , hence the 10-18 times per hour report , going to see my GP at the end of the month but I'm annoyed this could have been picked up quicker
Terrified that I will lose my licence
Or that I will have issues getting insured. My HGV and PCV licences are due for renewal this year and I wont bother renewing them but I'll be devastated if I cant drive my cars In the meantime i'm on a diet which isn't easy when you feel like crap and are craving sugar, but hoping if I can show a decent loss before the end of the month they will cut me some slack
I have had the CPAP machine since Friday and thought I would share some observations.
Firstly, I cannot in all honesty expect the NHS to supply one of these for potentially the next 40 years (I'm 41). Having done some research, they are pretty expensive, but I would much rather get my own so the one I have can be returned to use in the NHS.
Secondly my biggest concern (noise) is completely irrelevant. This machine makes almost no noise at all.
Thirdly, my other concern about discomfort is also misplaced. As I cannot breathe through my nose I have the full mouth and nose mask and once it's secure properly is pretty unobtrusive. I look utterly absurd. Vanity is not something I have been accused of previously but even so....
Fourth, one thing the manual understated in its "side-effects" bit, dry mouth. The first night I must have drunk four pints of water in the night to counteract the drying of my mouth. The other two nights I have managed to limit myself to a single drink so there is good reason to hope soon I will be able to go right through without needing any at all. There are humidified CPAPs available so I will probably end up buying one of those.
Finally I can report no improvement in my general wakefulness but it's not any length of time at all, and I had last week off, so as I am now back to work I will have a better idea of its efficacy. I even managed a lie in on Sunday, which is something that hasn't happened in a very long time. Fun and games!
Firstly, I cannot in all honesty expect the NHS to supply one of these for potentially the next 40 years (I'm 41). Having done some research, they are pretty expensive, but I would much rather get my own so the one I have can be returned to use in the NHS.
Secondly my biggest concern (noise) is completely irrelevant. This machine makes almost no noise at all.
Thirdly, my other concern about discomfort is also misplaced. As I cannot breathe through my nose I have the full mouth and nose mask and once it's secure properly is pretty unobtrusive. I look utterly absurd. Vanity is not something I have been accused of previously but even so....
Fourth, one thing the manual understated in its "side-effects" bit, dry mouth. The first night I must have drunk four pints of water in the night to counteract the drying of my mouth. The other two nights I have managed to limit myself to a single drink so there is good reason to hope soon I will be able to go right through without needing any at all. There are humidified CPAPs available so I will probably end up buying one of those.
Finally I can report no improvement in my general wakefulness but it's not any length of time at all, and I had last week off, so as I am now back to work I will have a better idea of its efficacy. I even managed a lie in on Sunday, which is something that hasn't happened in a very long time. Fun and games!
It can take weeks, or even months, to start feeling the benefits. It was explained to me that you're catching up on potentially decades of poor quality sleep.
I'd ask for a humidifier - most sleep clinics supply them as a matter of course.
You say you can't breathe through your nose? I had that and was referred to an ENT consultant who diagnosed a deviated septum and blocked turbinates. Had surgery a few weeks later to correct this and it made a massive difference to my respiration. Also reduced my apneas by 1/3.
I'd ask for a humidifier - most sleep clinics supply them as a matter of course.
You say you can't breathe through your nose? I had that and was referred to an ENT consultant who diagnosed a deviated septum and blocked turbinates. Had surgery a few weeks later to correct this and it made a massive difference to my respiration. Also reduced my apneas by 1/3.
Agreed re humidifier.
You can also try this: https://www.amazon.co.uk/BioXtra-Dry-Mouth-Oral-Ge...
Not being able to breath through your nose is a massive factor in OSA. Boxers/rugby plays suffer with it because of broken noses.
As above, is it a physical problem/blockage or is it 'stuffy'? You may think it's the former but does it clear after you've been swimming/diving in a pool/on a plane for example? As I've previously mentioned, for the sake of £1.50, buy a pack of antihistamine from Asda and take one. You'll know within 10 mins whether your nose does/doesn't clear and whether it is actually an allergy that's causing the problem.
You can also try this: https://www.amazon.co.uk/BioXtra-Dry-Mouth-Oral-Ge...
Not being able to breath through your nose is a massive factor in OSA. Boxers/rugby plays suffer with it because of broken noses.
As above, is it a physical problem/blockage or is it 'stuffy'? You may think it's the former but does it clear after you've been swimming/diving in a pool/on a plane for example? As I've previously mentioned, for the sake of £1.50, buy a pack of antihistamine from Asda and take one. You'll know within 10 mins whether your nose does/doesn't clear and whether it is actually an allergy that's causing the problem.
I have got nasal steroids that do very little and I have tried anti-histamines. The peculiar thing is my GP has referred me to ENT now that I have been diagnosed with SOSA after noticing on the third visit "gigantic" tonsils, nasal polyps and adenoids. The other odd thing is how dismissive my GP was of the consultant's findings.
Well, this is interesting. I have been trying to contact the respiratory unit at Treliske today because over the last five days I have been utterly unable to wear the mask. The first issue was too much air, but as that's not adjustable on the device I have, I changed the ramp time to automatic, so the machine only starts the constant air pressure on my sleep. This however did not last, and I am now having what can only be described as panic attacks in the night which then result in me having to take the mask off, drowsing for a bit, putting the mask back on and repeating. The air pressure is having such a dry mouth effect that I am drinking a huge amount during the night - so in terms of sleep interruption it's every bit as bad as the sleep apnoea! Luckily I have a cast iron bladder so I don't need to get up to have a James Riddle. I was premature in my earlier posts about how successful things were.
I am also having some sort of skin reaction - almost eczema - to the device around my mouth, and this is a bad thing for a euphonium player to have, especially as I have a competition in three weeks and an exam coming up. I think I am also going to have to shave my beard off as the seal isn't sufficiently good.
I am aware that there are humidified CPAP devices available (the one I have is not) but I am not sure what to do.
In addition to this in the last three weeks I have been diagnosed with having allergies to beef and dairy and have had to radically alter my previously appalling diet to one of moderate respectability! I knew this year was going to be s
te after I was dumped by the girlfriend on January 4th.
Sorry to moan but I need to vent at something inanimate!
I am also having some sort of skin reaction - almost eczema - to the device around my mouth, and this is a bad thing for a euphonium player to have, especially as I have a competition in three weeks and an exam coming up. I think I am also going to have to shave my beard off as the seal isn't sufficiently good.
I am aware that there are humidified CPAP devices available (the one I have is not) but I am not sure what to do.
In addition to this in the last three weeks I have been diagnosed with having allergies to beef and dairy and have had to radically alter my previously appalling diet to one of moderate respectability! I knew this year was going to be s
te after I was dumped by the girlfriend on January 4th.Sorry to moan but I need to vent at something inanimate!
Simonium said:
I have got nasal steroids that do very little and I have tried anti-histamines. The peculiar thing is my GP has referred me to ENT now that I have been diagnosed with SOSA after noticing on the third visit "gigantic" tonsils, nasal polyps and adenoids. The other odd thing is how dismissive my GP was of the consultant's findings.
This along with your last post (being unable to tolerate CPAP) make it more likely sleep surgery might be beneficial. Were you referred to the general ENT clinic or a specialist sleep clinic? If you are London based (or tbh if I was you based anywhere South) I would choose and book to be seen by Prof Kotecha at the Royal National in Grays Inn Road. I would also love to know how your GP can see your adenoids past the polyps and massive tonsils, you usually need an endoscope to see them. Ha don't worry, you're perfectly allowed to moan!
It's not easy. If it was happening to somebody else you might even take the piss. The truth however is that it is dropped on you. You can't drive anymore and you suddenly realise that sleeping is as fundamental to your life as eating and going to the loo. You don't get a choice and you have to face up to the fact that you are going to have to manage it for the rest of your life.
How you chose to manage it is up to you, but first you need to accept that it ain't going away.
As you are beginning to find out, there is a massive lack of knowledge out there in the medical profession as evidenced by your GP. OSA is massively undiagnosed and I suspect affects a lot of people on PH actually but don't realise.
It's also the first time that I've been confronted (as a rational person) by the irrational edict/dogma of the NHS. Somebody somewhere has decided that CPAP is a better (i.e. cheaper!!!) treatment than surgery and to hell with what you as a patient feel or the discomfort you suffer. CPAP works, is cheap and is therefore the answer.
As above have I have seen several specialists including one of the country's leading authorities and whilst it is obvious what my (physical) problem is, the default answer is cpap. If I hadn't forked out and simply use a splint, then I would be on cpap every night. The only option I have found is to go private and get the same specialist who is telling you that cpap is the only answer to operate on you to solve the problem. The only difference being of course that you are lining their pocket.
Sorry for the cynicism but unfortunately that is what you'll be up against. It's not an easy journey but it does get easier.
It's not easy. If it was happening to somebody else you might even take the piss. The truth however is that it is dropped on you. You can't drive anymore and you suddenly realise that sleeping is as fundamental to your life as eating and going to the loo. You don't get a choice and you have to face up to the fact that you are going to have to manage it for the rest of your life.
How you chose to manage it is up to you, but first you need to accept that it ain't going away.
As you are beginning to find out, there is a massive lack of knowledge out there in the medical profession as evidenced by your GP. OSA is massively undiagnosed and I suspect affects a lot of people on PH actually but don't realise.
It's also the first time that I've been confronted (as a rational person) by the irrational edict/dogma of the NHS. Somebody somewhere has decided that CPAP is a better (i.e. cheaper!!!) treatment than surgery and to hell with what you as a patient feel or the discomfort you suffer. CPAP works, is cheap and is therefore the answer.
As above have I have seen several specialists including one of the country's leading authorities and whilst it is obvious what my (physical) problem is, the default answer is cpap. If I hadn't forked out and simply use a splint, then I would be on cpap every night. The only option I have found is to go private and get the same specialist who is telling you that cpap is the only answer to operate on you to solve the problem. The only difference being of course that you are lining their pocket.
Sorry for the cynicism but unfortunately that is what you'll be up against. It's not an easy journey but it does get easier.
Have done so. The forums have been less use than what the members have on here advised to be honest - it's niche so the waffle and bullst is cut out, but thanks for your snippy and pert advice, I found it utterly invaluable and I'm intensely grateful for you taking the time to compose such an authoritative and useful post.
t is cut out, but thanks for your snippy and pert advice, I found it utterly invaluable and I'm intensely grateful for you taking the time to compose such an authoritative and useful post. Gassing Station | Health Matters | Top of Page | What's New | My Stuff