23 years old...finally been given referral..what next?

[Rydog22]

Hello

I made a forum around a year ago about my suspected sleep apnea. It took a year for me to get something done about it finally. It seems doctors in England are very uninformed about sleep apnea! Most doctors would look at me and think no way can a 23 year old man who is tall and in shape have sleep apnea. I suffer with loud snoring, day time sleepiness, drowsiness, etc etc

Finally I found a more informed GP who took my symptoms more seriously. I also have very high blood pressure for a boy my age (140/90-144/93)!! This leads me to suspect the apnea is more severe than I previously thought and I have probably had it for a number of years.

So, my first consultation with a sleep clinic is booked for January.

Any advice on steps to take? Am I going to be stuck on Cpap forever?? Is surgery definitely a bad idea?

Any advice would be appreciated

[ChicagoGranny]

Any advice on steps to take?

a. Go to the consultation.
b. Be sure to emphasize your bad snoring, your high blood pressure, and any other symptoms of sleep apnea.

Am I going to be stuck on Cpap forever??

a. It's not so bad. It will become routine.
b. Be glad you were diagnosed young and get treatment before you suffer serious damage.
c. Forever? You are young enough that some new treatments will be developed.

Is surgery definitely a bad idea?

a. If you are talking about UPPP, definitely a bad idea. A permanent bad idea.

What did I fail to ask?

a. Definitely make a consultation with an ENT. She should examine your tonsils, adenoid, nasal passages, and vocal cords. Discuss sleep apnea with her.
b. Do not have an UPPP.
c. Do not have an UPPP.

[Julie]

Hi - first, surgery is generally a bad idea because very, very few people find their apnea gone as a result of it. Secondly you're likely not going to be stuck with Cpap forever because science is changing rapidly these days so I imagine there will be other ways to deal with it in the future. Thirdly I strongly recommend you PM a member here RIck Blaine who's in the UK and is very 'up' on how things work there and what the best course of action is with regard to various aspects of therapy, accessing it, finding the right machines, etc. etc.

Until you have your test, the results and a machine lined up, you might want to look into not sleeping on your back if you can help it (wearing backpacks or something stuffed with towels, etc) because overnight you're likely to flip whether or not you planned it.

It also might be possible for Rick to help you find a good 2nd hand machine (I don't think a script would be needed in that case) to use til your results come back and you actually get a new machine) and we can help you get set up.

So welcome, and good luck.

[rick blaine]

Hi Rydog22,

In medicine, this is still a new and growing specialism. Twenty years ago, there were only a couple of places in the UK offering any help with sleep apnea. And the machines then that gave 'continuous positive airway pressure' (CPAP) were big and noisy.

Now, most of 150 or so foundation trust hospitals in the UK have a sleep-medicine department. The one I go to in Gloucester is seeing 2,500 patients a year as UK GPs are referring more people. And GPs are referring more people because the machines are small and quiet, and the treatment is both effective and cost effective.

From what you say, you're now on the waiting list with an appointment in January. So something like six to ten weeks away. If you're working, and your job involves driving, you can ask to be fast-tracked. That means they should see you within four weeks.

Your first appointment usually isn't very long. The main thing is to give you a 'sleep study' kit to take home with you - a little canvas bag with the kit inside it.

There's a thing to go on an index finger, a stretchy tube to go round your chest, and a hollow plastic tube that splits into two ends - which go in your nostrils. All three of these things plug into a recorder about the size of a pack of cards. And then you go to sleep.

In the morning, you take the kit back to the sleep-medicine department, and they plug the recorder into their computer.

And they count the almost-completely-closed a-pneas (A) and the half-closed hypo-pneas (H) and divide by 'how many hours you slept' – to get the measure or 'index' (I). And the result is your Apnea-Hypopnea-Index. AHI for short.

The NHS treats at 15 and above.

At either that first appointment, or when you take the kit back, they usually also ask you to describe your daytime sleepiness in some detail. That's your chance to say how lack of good sleep is affecting you.

And just in case your GP's referral letter doesn't mention it (although it probably does), make sure to tell the doctor and/ or specialist nurse who sees you about your high BP.

I agree with both Julie and ChicagoGranny – surgery is not what it's cracked up to be. It doesn't always produce the improvement it is supposed to do. And some people who've had it have been left with residual pain.

CPAP, on the other hand, and for most people, once it's adjusted right, works.

[Rydog22]

Hi Rick,

Thank you for your informed and helpful responses. Much appreciated.

My appointment is booked for the 11th January 2019. How long will it take from when I return the testing kit to receiving my results?

[rick blaine]

Hi Rydog22,

They usually tell you there and then. At least they do in my area.

And if they don't issue you with a machine on that day – assuming your AHI is 15 or over – they would normally give you an appointment to be given a machine and mask within a week or so.

That appointment should be for at least half an hour – so they can try different masks on you – to see which best fits your face.

At some point, you may have an appointment with the consultant – but that may be the first and only time you'll see him or her. In my area, for example, it's a formality. And treatment comes from one of the sleep physiologists or one of the specialist nurses.

[Rydog22]

Ok thank you. I shall post with the results I receive in roughly 3.5 weeks time!

I can't wait to finally find out exactly what is happening to me while I sleep.

So if I am told my AHI is mild (5-14 apneas/per hour)....does this mean there are no treatment options? Or just that it's not free via the NHS?

Many thanks

[rick blaine]

Yes. It means that treatment will not be forthcoming from the NHS – if you fall into the mild-to-medium category.

But that doesn't mean you can't have treatment period. And while it may seem a bit 'hard cheese' if your AHI is just 1 or 2 below 15 (the start of the medium-to-severe category) and you're still not sleeping great – that's the way it is with the NHS. They have to draw a line somewhere for cost reasons.

And the cost of a machine plus mask to someone who supplies the machine their self is not that great – if you spread it over five years – which is the minimum amount of use you can expect from a modern APAP machine.

There are two brands that are predominant in the market, and which are very reliable. Most UK hospitals standardise on one or other of these two brands – Philips Respironics UK and ResMed UK.

If buying yourself, it's better to get an auto-adjusting machine – one that can be set to either one fixed pressure or to automatically adjust pressure. A fixed-pressure machine can only do fixed-pressure, and doesn't give that choice. And an important 'techie' thing – best if the machine you get is 'fully data compatible'.

Prices new are in the range of £600 to £680 for the machine, plus £120 for the mask. The good news is, there's no VAT.

You can also buy a second-user machine for less than that – often with fewer than 1,000 hours 'on the clock'. The lifetime of a machine is conservatively rated at 10,000 hours, and many do more than that, so second-user machines can have a lot of 'life' in them.

The owners of this forum sell second-user machines, and they are familiar with exporting to non-USA countries, and can take care of all the paperwork.

So, yes, you can treat yourself for sleep apnea if you fall outside the NHS/ NICE guidelines. And you wouldn't be the first person in the UK to do so. There are plenty of others in that position – and who find treatment makes all the difference.

Anyway, that's just to answer your question. We don't know what your numbers are yet. Let's see how you do in the sleep study.

[springman946]

there are people on here who are thin as rails and have sleep apnea the condition is more in people who are overweight or obese but very thin people can have sleep apnea as well also when I was born i weighted 1LB and 14 Ounces i have cerebral palsy and yes its mild but when i was little I was deprived of oxygen for a short time but it caused me brain damage so when the hospital put me on some type of system that would sound an alarm if I stopped breathing. come to find out that they told my parents that it was an apnea not a problem with my heart like they though originally I had complex sleep apena all this time and I never knew it. or I never got tested for it. I am 36 years old now and my doctor tells me that no matter how much weight I lose there is a good chance that i will be confined to my bi-pap machine for the rest of my life. but its always good to lose weight. even if I lose 40 pounds because i'm 265 lbs now that would put me 225 LBS I would most likely need to use my bi-pap machine every night. I can say that I lost the weight and If I still need the machine. oh well. what am I going to do? that's the way of life for me as my complex sleep apnea was there first. and yes being overweight or obese makes the condition worse the only thing I could say is when I lose the weight I might get a pressure reduction. but that's about it.

[chunkyfrog]

Have you ever heard of Reggie White?
Dodging the bullet is awesome.
Go for it.