sleep apnoea? my lung doctor is saying i hav... - Vasculitis UK

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sleep apnoea? my lung doctor is saying i have sleep apnoea

gsmith profile image
3 Replies

could it be the wegeners ?as apparently it is caused by a lack of oxygen to the brain when asleep, my oxygen levels are low to begin with, and no one listens when i ask about subglottic stenosis, i get breathless just walking up and down stairs,i am not sleepy in the daytime, which is one symptom

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gsmith
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PatriciaAnn profile image
PatriciaAnn

Hi Georgia

I don't know anything about sleep apnoea but I believe there are experts out there who deal with this particular problem. Is it due to the WG, well, who knows. This disease causes so many strange things.

If you think subglotic stenosis is one of your problems then you need to be referred to an ENT specialist and have a scope put up your nose and down into your trachea. That will show, without doubt, if you have SS as SS causes inflammation of the walls of the trachea causing it to narrow, therefore, making breathing difficult.

SS isn't just being short of breath. It's being extremely short of breath where you just have to stop after very little exertion. You will have a very audible wheeze (stridor) and you'll sound like a traction engine - well, I did.

Pat

John_Mills profile image
John_MillsVolunteer

Sleep apnoea is not that uncommon, but it can be very serious. It indicates periods when breathing does not take place for many seconds or even more than a minute. Your partner would normally be very conscious of your snoring and periods without breathing, followed by a great gasping gulp of air. It does usually cause an abnormal sleep pattern, resulting in tiredness the following day. Your hospital should have access to a sleep clinic, where they can kit you out with a breathing & sleep monitor to assess the situation - or even invite you to stay in hospital overnight for the same purpose.

At a simple level, the problem tends to be associated with being overweight, sleeping on one's back, mouthbreathing and drinking alcohol & eating heavily before bedtime.

So that's the background.

Obviously, in the case of WG, restricted nasal passages and subglottal stenosis are a factor to be considered. .Endoscopy can identify if subglottal stenosis is a factor - if so, it can be treated. It does also usually cause a characteristic type of breathing sound. Another factor is the possibility that the WG is causing mini-emboli in the lungs - a rarely mentioned problem - due to the increased presence of mini blood clots in the body. This should not be a problem where the WG is fully controlled.

If it is suspected, anticoagulant therapy will sort it out.

The message is that the problem needs to be investigated fully and all aspects considered!!

gsmith profile image
gsmith in reply toJohn_Mills

thanks!! if it is sleep apnoea i have to inform the dvla, if they take my licence away they may as well give me a lethal injection, driving is enjoyable and neccasary to me

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