Sleep apnea consultation - advice please

[ScumOfTheRoad]

Paging Wowbagger!  I am convinced Mrs Scum has slee apnea, and it is doing her no good.
She spends long times not breathing, then snores loudly.  She is very weak at the best of times.

It has been suggested we get a private consultation for sleep apnea. Any advice on how to go about this?
Area is central London.   I hesitate to simply Google for a clinic as I have never gone private before and don't want some charlatan.

[Arminius]

Is it possible to get a referral (or even a recommendation) from your GP? When I was diagnosed, getting on for 15 years ago, I ended up at the local NHS sleep clinic and they did a good job. I don't know how things have changed since then, but I don't imagine it will have been for the better, so private may be your only option of being seen soon. I haven't looked myself, but are there sleep apnoea (or broader sleep health) forums out there that could give guidance on who is competent?

I hope you manage to find someone who can help.

[Wowbagger]

My referral was through the GP and Basildon hospital. I eventually got a CPAP machine. After losing weight I no longer considered that I was suffering and the consultant discharged me.

During the period that I was being inflated at night, I suffered chest pains which have not recurred since stopping using the machine. No-one told me to expect these and I had a thorough cardiac check-up which revealed no problems likely to cause such pain. Discussions with a small number of other sleep apnoea sufferers indicated that they too suffers such pains. I recall one incident that occurred whilst I was walking between Baker Street and Marylebone stations. It was such a sharp pain that I had to stop and compose myself. Later that same day I walked 9 miles through the Chilterns with Her Welshness with no recurrence of the pain.

It is my belief that the high level to which one is being inflated by the machine actually causes minor stretch injuries which are responsible for the pain, but as I say no medical professional ever mentioned that this was a thing.

[chrisbainbridge]

I would suggest asking your GP where he would refer your wife and then contact the unit to enquire about private consultations.

[Adam]

My wife had noticed I had the classic symptoms at night of stopping breathing, so rather than waste time going via my GP, I just rang up Spire* and got asked to choose between a couple of consultants.  The website had information about them and their specific expertise, so after making a choice, I got a fairly quick appointment within a couple of weeks. 

The consultant initially didn't believe I could have sleep apnoea as I'm not overweight, don't smoke and rarely drink.  It was only after sending me home with the kit for a couple of nights that he admitted he was quite shocked seeing the results, as apparently I was having between 30-60 episodes an hour with no breathing, but it was only due to being fairly fit through cycling, that I wasn't suffering excessive tiredness during the day. 

I tried the CPAP machine but just couldn't get on with it.  I can't sleep in a room with any noise, not even a ticking clock.  The machine itself wasn't noisy, but the airflow itself was, meaning it took ages for me to get to sleep, plus if I nudged the mask in my sleep, the escaping air woke me up.  On a couple of occasions I also found I'd partially restricted the hose with my arm on it, so again that woke me up.

I've ended up with a low tech solution consisting of a heart rate monitor strap onto which I've attached an old aerosol can which then sits across my upper back, making it very uncomfortable to lie on my back.  This means when I'm asleep, I don't roll onto my back, so no apnoea.



* I think you'll probably get similar results from any of the major UK private health insurers.

[Sergeant Pluck]

Why not see if the GP will refer you to the sleep clinic at the Brompton?

https://www.rbht.nhs.uk/our-services/lung/sleep-and-ventilation/sleep-centres-royal-brompton-and-harefield-hospitals

They do have private patients of course, but worth speaking to the GP, emphasising the impact this is having on Mrs. Scum and indeed on Mr. Scum due the worry involved.

if it does turn out that a private referral is needed, it is possible to self-refer:

https://www.rbhh-specialistcare.co.uk/patients/how-be-referred

As a private patient, you can contact the customer services team as a self referrer, and ask to be seen or admitted by one of our consultants.

I do not work at the Brompton sleep clinic but I believe it is well regarded.

[Sergeant Pluck]

The consultant initially didn't believe I could have sleep apnoea as I'm not overweight, don't smoke and rarely drink.

https://www.theguardian.com/society/2023/jan/28/nhs-begins-treating-sleep-apnoea-with-pioneering-chest-implant

[rogerzilla]

SO has it (I think) despite weighing as much as an astronaut's fart.  In her case, eating a lot of carbohydrates definitely worsens it.

[Ham]

In my case, I was falling asleep during the day in embarrassing and dangerous situations. The initial diagnosis of apnoea was via GP, right through to the point of diagnosis which was blocked nasal passages (particularly embarrassing since I have a mahoosive conk), I had the rhinoplasty operation on private health insurance for speed and convenience, it could have been done on NHS.

[Arminius]

My referral was through the GP and Basildon hospital. I eventually got a CPAP machine. After losing weight I no longer considered that I was suffering and the consultant discharged me.

During the period that I was being inflated at night, I suffered chest pains which have not recurred since stopping using the machine. No-one told me to expect these and I had a thorough cardiac check-up which revealed no problems likely to cause such pain. Discussions with a small number of other sleep apnoea sufferers indicated that they too suffers such pains. I recall one incident that occurred whilst I was walking between Baker Street and Marylebone stations. It was such a sharp pain that I had to stop and compose myself. Later that same day I walked 9 miles through the Chilterns with Her Welshness with no recurrence of the pain.

It is my belief that the high level to which one is being inflated by the machine actually causes minor stretch injuries which are responsible for the pain, but as I say no medical professional ever mentioned that this was a thing.

Interesting, I've not noticed chest pains before; I'll keep an eye out for them. The only thing I've sometimes noticed is very occasionally burping lots in the morning. I've put this down to the pressure not being high enough to keep my airway open, so my efforts to breathe in have ended up with me pulling air into my stomach. This may or may not be physically possible. 🤔

Regarding others' comments about it being difficult to get used to, I would agree, but I've found it worthwhile. I had to experiment a lot to find a good position for the hose, and get a good seal on the mask without having big dents in my forehead each morning. The sleep clinic were also happy to give me a number of masks to try out.

Adam, did you have a narrow hose? I have found they are much noisier than the wider ones. I couldn't sleep with the noise of the narrow one, but the other one doesn't bother me.

[T42]

I've ended up with a low tech solution consisting of a heart rate monitor strap onto which I've attached an old aerosol can which then sits across my upper back, making it very uncomfortable to lie on my back.  This means when I'm asleep, I don't roll onto my back, so no apnoea.

A classic remedy for snoring was to sew a cotton reel into the back of the offender's pyjamas.

[finch]

For this who suffer(ed) , how many times a night do/would you wake ? I wake maybe 3 or 4 times most nights and tend to fall straight back asleep. Have mild concern that it may be SA but I’m only slightly overweight , don’t smoke , drink or do drugs. I also sleep on my side so I’m unsure - Watch says I’m a steady 13/14 brpm overnight and SO says my snoring isn’t heavy nor does she “think” I stop breathing

[Adam]

Adam, did you have a narrow hose? I have found they are much noisier than the wider ones. I couldn't sleep with the noise of the narrow one, but the other one doesn't bother me.

It didn't seem excessively narrow.  The clinic hadn't mentioned other hose sizes, only a nose only mask. I just found the whole concept restrictive.

[Adam]

For this who suffer(ed) , how many times a night do/would you wake ? I wake maybe 3 or 4 times most nights and tend to fall straight back asleep. Have mild concern that it may be SA but I’m only slightly overweight , don’t smoke , drink or do drugs. I also sleep on my side so I’m unsure - Watch says I’m a steady 13/14 brpm overnight and SO says my snoring isn’t heavy nor does she “think” I stop breathing

I never woke up at all due to disturbed breathing.  I understood from what the consultant told me, if you're on your side, then the airway doesn't get restricted so you don't stop breathing.  It's only when you're on your back that's when it would get triggered.

[Richard P]

Just found this post!

I also have OSA. It took the NHS four years to diagnose what the cause of my exhaustion was, I had 101 different blood tests, scans, x-ray, etc before I came across Sleep Aponea and mentioned this to the GP who after using the Epworth Sleep Test agreed that this could be the cause. A referral was made to the Sleep Clinic at East Surrey Hospital who confirmed, after a Sleep Study/Test that I has moderate Sleep Aponea (18 episodes per hour with a loss of 6% oxygen). I was then issued with a CPAP machine, Phillips Dreamstation. I use a mouth mask as I breathe through my mouth rather than my nose.

I'm not over weight, 70kg, 183cm tall. I don't drink nor smoke & eat relatively healthy. 

It took another year before I felt able to cycle again, possibly due to the residual exhaustion. I started cycling again on 1st January this year, to date this year I've cycled nearly 6000 km.

Like Adam I can't sleep with any noise at night, but the CPAP machine doesn't bother me, hardly any noise.

Question. How do OSA suffers manage when on 400+ km Audax as it's not practical to carry a CPAP machine?