The beginnings of my story, advice welcome

[Yetiboy]

Hi there,

I am 25 years old. 6'2, 200lbs. I am not fat, but I guess my neck kinda is. In the first anecdote I share, I believe I weighed 20lbs less.

I've always been an extremely bad snorer. I had my adenoids out when I was a kid to curb it, but it's still bad.

Probably three years ago now I was sharing a hotel room with a friend and due to jet lag, he stayed awake on his laptop for many hours while I slept. When I awoke he claimed I sounded like 'a guinea pig being choked' and immediately diagnosed me with sleep apnea. Predictably, I did nothing.

This past year I have had a girlfriend so now have a better handle on how I'm sleeping. She says my snoring will suddenly get extremely loud and sound like I am choking, then I will stop breathing and go extremely quiet for around 15 seconds or so. Sometimes she gets very scared and shakes me awake.

Ok, so far, so normal I assume.

I work from home so I am fortunate enough to be able to sleep however long I like. I generally sleep 8 hours and wake up feeling bad. I wake up many times in the night and feel like a lot of it is very light sleep where I get disturbed by noises very easily. I yawn a ton throughout the day. I feel tired a lot. If I start reading a book, there's a decent chance I'll feel very tired and put it down and then fall asleep, but it's a decision I make. If I'm on a train or in a car, I like to sleep of course. But again, I consider that a decision. I am in zero danger of ever falling asleep while driving a car. I am in zero danger of ever falling asleep when talking to someone. However, do I believe I could feel way fresher? Sure.

I went to my GP who was some youngish girl and told her that I believe I have sleep apnea. We talked about the Epworth Sleepiness Scale. I said what I said above. She wasn't very alarmed and didn't really want to help. I pressed the matter and eventually got referred to an ENT clinic (not a sleep clinic?). Anyway, that was a while ago, the appointment is for Tuesday.

1) I'm interested in people's responses to the paragraph in italics. What do you think of what I wrote? Has anyone on this forum successfully received a CPAP after having the same initial story as me?

2) My dad has basically the exact same symptoms as me. My mum confirms he frequently stops breathing many times a night. He is 57yo, and he didn't even manage to get a referral from his GP. I am worried about the strain being put on his heart, his father had at least one heart attack and a stroke I believe. Thoughts on his situation?

Thanks very much for reading all this. It got really long.

[Tigers Fan]

In a nutshell - get your entire family to a new GP and ask for a sleep study referral - OR - ask Intus for a sleep study (way quicker but private).

TF

[symmit]

Seriously, find a different doctor, or do what I did and get a private test, either with a view to private treatment or to show your resolve to your GP.

[Richard]

Hi Yetiboy and welcome to the forum.

It is certainly not 'normal' to stop breathing during your sleep, yet this is one of the most common signs of having OSA. All the better if you have a bed-partner who notices you stop breathing, then something can be done about it.

What you need to do is Google 'Epworth Sleepiness Scale' and 'Berlin Snoring Questionnaire', download and print them both. Examples:

http://www.britishsnoring.co.uk/sleep_apnoea/epworth_sleepiness_scale.php

http://www.northwestspecialtyhospital.com/images/SleepCenter/Forms/NWSH%20Berlin%20questionnaire%202009.pdf

Fill in the forms, answering the questions truthfully. Make an appointment with your GP and take your forms with you. These are standard medical documents and your GP will recognise them as such.

Your purpose is to obtain a referral to a recognised sleep-clinic and have your OSA diagnosed by a respiratory specialist.

If you are living in England or Wales, go to www.chooseandbook.NHS.co.uk, put in your postcode and enter 'sleep apnoea'. This will show all the hospitals and sleep-clinics where sleep apnoea is treated within a 50-mile radius of your home together with their waiting-times. Using your local knowledge and experience, you can decide which hospital you would prefer to treat you, and whether or not you are prepared to wait.

Now, when you see your GP, he has evidence of your condition and should refer you to a respiratory specialist; you can tell him the the name of the one you want to see.

If you suspect you have OSA, don't delay seeking treatment. Untreated, OSA can lead on to far more serious disorders that greatly affect the quality of life.

Instead of Googling, you might like to try www.sleep-tests.co.uk

Best wishes

Richard

[Sleep2Snore]

Hi,
A lot of Doctors will put you to ENT first.
When you are there tell them you suspect you suffer from Sleep Apnoea and why you think you do. Take the results of the Epworth (sleepyness) Scale above with you.
ENT may refer you to a Sleep Clinic or my even have one attached if a small hospital. Be cautious of the clinic offering you an operation, ask questions as to why they think an op will help. Ask them if they think a sleep Study is the way forward.
Oh and good luck.

[Yetiboy]

Thanks for the replies guys.

When I said 'so far so normal', I wasn't implying that choking in your sleep was normal, just that I imagine everyone reading along could relate to what I was writing.

I'm still not sure what to make of the Epworth test. When it talks about falling asleep reading a book, does it mean passing out with the book in your hands? Or 'gosh i'm sleepy, i'm gonna put this down and take a nap'? Anyway, I assume the latter, but I still don't think I can score above 10ish. On the plus side, I'm scoring pretty awesomely on the snoring test

I will report back on Tuesday. Thanks again.

[Poor Old Ann]

[QUOTE=Yetiboy;16140]Thanks for the replies guys.

I'm still not sure what to make of the Epworth test. When it talks about falling asleep reading a book, does it mean passing out with the book in your hands? Or 'gosh i'm sleepy, i'm gonna put this down and take a nap'? Anyway, I assume the latter, but I still don't think I can score above 10ish.

Hi
I'm new here but I'd just like to say that I come out as "normal" on the Epworth test but I managed to persuade my GP/ENT clinic to put me forward for a sleep test and I was diagnosed with moderate OSA.
Good luck
Ann

[Tigers Fan]

It's very simple really. Falling asleep means falling asleep - position of book and head irrelevant.

[Yetiboy]

Thanks Ann


Tigers,

Ok, cool.

[Yetiboy]

Hey,

Went today. Filled in a questionnaire in the waiting room, then walked in and the doc (he is nice though a bit crazy) said 'whoa, no way you snore! you are so tall and thin!'

I am ~ 6'2, 91kg, 26.1 BMI, so that is obviously a bit of an exaggeration.

Anyway we talked about my snoring and whether I stop breathing in the night. He checked me out with the mirrors and his hands and said everything looked good. At this point he seemed in disbelief somehow. Anyway then he ran a camera through my nostril and down my throat (so gross), and eventually had an 'a-ha!' moment. I didn't ask what he had seen (i really should ask more questions), but apparently it was something to do with my sinuses. He also said I sound pretty hoarse, but I don't know if that was just because I was talking in a more serious tone. No one has ever said that before.

He then prescribed 4 months of Omeprazole tablets and a nasal spray (Fluticasone furoate). Then I was told to go to the hospital and pick up the sleeping monitor device (the one you put on your finger). I am using that tonight, printing it out, then returning the device to the hospital tomorrow. I keep the printout from the machine, but I don't think I am going to see the doc for another 4 months? I need to call and check on that. I do have to go for a skin allergies test for some reason, they said I will get details in the post.

[Sleep2Snore]

Thin does not mean you do not suffer from OSA, that said there are lots of reasons for snoring.
The thinnest person I know suffered quite badly from OSA, so being thin is no guarantee you do not suffer from OSA.
However, most Dr's think OSA goes with being fat or obesity, this is not always the case though that being said most people that do suffer from it do tend to be larger than most. Whether that is because of OSA or otherwise is another thing, but it does generally go with the territory.
Keep pushing for a test if you do not improve, it is the only way to be sure one way or the other.

[Yetiboy]

blah, my oximeter results seem good. 100% between 90-100, low of 94, average of 97.

[James @ Intus]

Interesting story so far, thanks for sharing.

Couple of comments.

In the UK, with the NHS, sleep disorders are dealt with by either a sleep clinic or an ENT. Sleep clinics will try and get you treated, if you condition is serious enough. ENTs will try and find a reason to operate, if there is any reason to justify it all. OK, there are a few ENTs less laser-trigger happy than that, but that's the stories we keep hearing.

So if you came through an ENTs office with all your body parts still attached, you are in luck. Do not get pushed in to sleep apnoea surgery. Surgery only works for the surgeon's bank account, not for the patient. At least not long term, there is zilch evidence for that.

So try and escape that clutch and try CPAP or a dental solution first.

Now about your oximeter results. If you are not overweight, as is evident by your BMI, finger pulse oximetry won't be a great way to measure OSA. You need a respiratory sleep study like this one. The hospital will probably have one available too.

Why? Because in normal-weight people, the blood apparently flows around so fast, that you can't accurately measure the dips. So you could have a mega-apnoea, but no recorded desaturation, even though you may well desaturate.

In overweight people, the blood flows around a lot slower/a longer journey. So fluctuations in blood oxygen saturation levels can be picked up quite easily. That why in our how to choose a sleep study guide we say you need a multi-channel test if BMI is under 25 and over 40.

Having said that, even if you are 100% between 90 and 100, you can still have a lot of 4% dips between those figures, so we'd need to see the whole report to make any conclusions about that. But for you, a respiratory study is the way forward.

Skinny/normal-weight people get OSA for a number of reasons. Either because of a recessed lower jaw, an overdeveloped neck (rugby, body builders etc.) or simply because they were born with floppy windpipes.

Sinus problems are another big cause of sleep-disordered breathing. Have a read here about how the SinuPulse helps Sleep Apnoea. If you can't breathe well to begin with, because of obstructed airways, OSA is around the corner.

So going forward, my tips:

- Get a multi-channel respiratory test done to see the full extent of your suspected OSA
- Consider the SinuPulse Elite. Many here have great success in using it to maintain free nasal passages. Also see the SinuPulse reviews on Amazon and our own site. Try it before trying sinus surgery or getting addicted to steroid/drug filled sprays.
- If still needed, get treatment, ideally not of the surgery kind to begin with. Try CPAP/Manidibular Advancement first. If it doesn't work, you can simply abandon it. If surgery doesn't work, they won't put your organs/tissue back in. So you start with what's reversible, and if that fails, you can gable on the irreversible.

And get your father sorted too, at that age certainly, but at any age for that matter, you do not want to suffer the consequences of prolonged untreated OSA. It does a lot more than annoying your mother!

[Yetiboy]

Hey James,

Firstly, thanks for taking the time to write such a detailed reply.

I'll start by saying that I feel like I've slept very very well the last few days. Long, uninterrupted, deep sleep and woke up refreshed. In the last few months my sleep has been so light that I've been woken up by tons of things. Definitely not the case the last few days. It never really occurred to me that my airways could be that blocked, but I have noticed a difference the past few days (though not an out of this world difference). When the doc put that tube down my nose/throat, he also commented on how much gross stuff was attached to it when it came out.

I'm spending this weekend with my girlfriend and am looking forward to her assessing my snoring / shortage of breath in the next few nights.

Anyway, it's a bit worrying to me that my doctor never mentioned an endgame. So I take this spray for 4 months, feel good, then what? Presumably if I stop using them I will become clogged again. I've seen a friend take nasal drops on and off for years and don't want to get like that.

After a quick glance SinuPulse looks pretty neat. I will definitely bear that in mind and read all the reviews. I do love buying gadgets off Amazon...

You do make a very valid point about the difference between the ENT route and the sleep clinic route. I will try to get on the other path. No intention of having any surgery.

My dad is on holiday now but when he returns I'll be sure to insist he goes back to his GP and demands a referral to a sleep clinic.

Thanks again.

[James @ Intus]

In some cases, ENTs work closely with the sleep clinic. So don't dump the ENT if there's no immediate sign of him being scalpel-happy. He can probably help you with the mucous situation, though the SinuPulse can too.

You're right in thinking about the endgame. Mucous/cattarh like that has to come from somewhere, in most it's a diet think. Cut out dairy and you will probbaly see a big difference. Same with flour based foodstuffs. The SinuPulse comes with a booklet with long term tips like that, Amazon has some more books on the topic too.

Problem with prescribed sprays is that you can get addicted and subsequently withdrawal symptoms. That's why it's important to find a natural or permanent solution.

Glad to hear the CPAP is doin it's thing though. But many hear can testify that clear nasal passages make CPAP a lot more easy.