Sleep Apnoea (Apnea) / OSA / Diagnosis and Support

Andrea B.

Many threads already relating to OSA (Obstructive Sleep Apnoea), (A)CPAP ((Auto) Continuous Positive Airway Pressure) systems and diagnosis, but aiming to start this one as a catch-all.

A brief summary of the illness can be found here.

https://www.mayoclinic.org/diseases-conditions/sleep-apnea/symptoms-causes/syc-20377631

I was recently diagnosed as severe and have started with a CPAP machine.

My story is some years of chest pains and extreme fatigue and despondency, most recently culminating in waking and being out of breath. This coupled with my wife claiming I was having night-horror type dreams of waking up distressed, and a friend sharing room claiming that I stopped breathing.

I proposed the potential of OSA to my GP.

As I had health Insurance, I elected to go private.

The consultant met me for a few minutes and booked me in for an overnight within a few weeks, whereby I was monitored with a 1-piece piece of equipment (more on this later).

The cost to my Health Insurer was €1200.

I understood from speaking to others that the Public system could have waiting periods of between 6 months and 1 year.

The consultant prescribed a ACPAP machine. He said it was critical that I begin this treatment as soon as possible.

I was visited by his designated machine supplier and set up.

I am finding the mask uncomfortable, but am going to persevere, as if there is no other option, the symptoms of OSA are a living hell, and the potential results of untreated OSA are life threatening.

So, what's the problem?

Considering OSA can result in heart disease, hypertension, stroke, fatigue (leading to accidents such as driving), anxiety, symptoms of depression, brain fog.......etc, and that a diagnosis and treatment can take an enormous future strain off the health services;

1. I believe I have been suffering with non-diagnosed OSA for many years now. I have had multiple cardiac tests, been prescribed anti-depressants and sleeping tablets. Occasions when I awoke and could not get back to sleep, I now believe to have been due to high adrenaline levels due to low oxygen and increased heart rate episodes.
2. I may have endured longer being non-diagnosed if I did not have a partner to report on my sleep.
3. If I could not afford private or did not have health insurance, I would be still waiting in an untreated state with the OSA symptoms and continued quality of life and health degradation.
4. The ACPAP systems prescribed in Ireland are done so by a very few companies. Their rental is approx €100 per month (this includes an annual "free" replacement of a mask also ~value €150), or purchase machine off them for approx €1600. These machines (exact same) can be sourced for €500. These companies show you how to claim back rental on Drug Repayment Scheme (if your monthly is over €80), or if Medical Card holder, they are free. None of those options are "free", as ultimately, the tax payer is footing the bill.
5. The equipment I was monitored with, I googled and could see it was designed to be suitable for home sleep studies. However, I was put in a hospital bed. A bed and resources denied to someone who needed it.
6. The equipment and Sleep Study can only be prescribed by a consultant (€€€€).
7. There are likely multiples of people suffering from OSA, not being treated due to having been misdiagnosed or non-diagnosed.
8. There are likely multiples of people having abandoned the ACPAP system due to cost or not being able to tolerate the designs of masks.

Since been diagnosed, I researched and purchased (€110) a data-aquisition oxymeter/pulse rate monitor. The results from this, if I had used in the past, would have fast-tracked me to early data and hence earlier requests for medical support based on that. For example I observe drop in blood-oxygen levels coinciding with spikes in pulse rate (150BPM!!), prior to my waking unexpectedly. this equipment is a yardstick measurement for me and in no way replaces the proessional sleep study equipment and extra data points.

I am not advocating bypassing professional medical diagnosis or support. It is just that the present routes in terms of delays and costs are totally unfair and putting lives and quality of lives at risk, coupled with strains on the health services due to future resultant illnesses.

I believe that a focused thread such as this may offer an opportunity for others to share their stories, anxieties and advice.

If it led to a momentum to getting the illness diagnosed (or negated) faster, using the modern available technologies and getting the ACPAP equipment, all at fair costs, all the better. I have considered, for example, some sort of co-operative to offer buying power.

Those I have made personal contact with and who have adapted to ACPAP therapy have said that their lives have dramatically improved. To think that lives could dramatically change for the positive, with a piece of kit that can be sourced at €500 is phenomenal, but yet we are put through the hoops of time and inflated costs.

blueoceanfreedom

Hi Andrea, just came across your post. I've been diagnosed with severe sleep apnea over 5 years ago and I have been using the phillips dream station with good success. I think it was earlier last year I was notified about the problems with the dream station, and I registered for a replacement, having bought my own machine as the monthly rental was astonishing. Long story short, I happened upon a youtuber CPAP reviews, who is based in Australia, and it looks like I'll be dead a long time b4 phillips do a replacement or refund here in ireland. Australia has had a great response as the consumer laws there are really strict, but the USA are lagging way behind in fixing the problem. Europe are also very slow so I'm not expecting anything soon. In Australia, those that got a replacement machine are now again being recalled as there's problems with the power flex, so I have lost all thrust in Phillips.

I have decided to buy another CPAP, and I'm going with the Resmed 10. My sleep nurse got a rep to contact me from Dublin and I got a quote of over 1700 euro, this for a machine that's really outdated as the airsense 11 has taken over. Needless to say I turned it down and started researching buying online. I priced CPAPEUROPA, and got a quote for 750 euro. I presume there would be vat on that coming into the country.

What I'd like to know is if anyone bought from this company, I've looked up the reviews and all have come out with top marks, but is it possible to have a 1000 euro price difference?? Hoping someone has some information.

Thanks.

Andrea B.

https://www.boards.ie/discussion/comment/119887373#Comment_119887373

I have just yesterday purchased the BMC G3 A20 Auto CPAP with Smart Humidifier, BMC Medical from cpapstore.eu for €575 all in, incl delivery.

Got a ups shipping notification this morning from Greece, so no duties.

The Irish crew selling for €1600 with a reduction of €300 because I have paid 3 month rental. They would not budge when I explained my option.

Like, what do they even do with the returned used kits?!

Be sure that if buying the Resumed that you are including the humidifier.

With respect to price differences; the nurse/rep that called to me was driving a high spec BMW, which I found out was a company car. Also, a visit to company website shows a top heavy smiling management team, so someone is paying for that side of it.

Will post back on how my order goes.

Btw, you mention a sleep nurse. Who has assigned them?

NIMAN

I also think I have undiagnosed OSA.

My OH has been telling me for years that I stop breathing often in my sleep.

I am early 50s and a shift worker and used to put this down as the reason why, over the last few years, I am permanently exhausted. When I get up in the mornings after 8 or 9 hours sleep, I feel very fatigued, like I haven't slept at all. Often during the day I would feel the need to go for a nap.

Also over the last 3 or 4 years I had heart checks done for palpitations. These were quite severe and I was diagnosed with a sinus pause. From reading I know that this condition may be made worse with SA.

I recently spoke to my gp again about my extreme tiredness. He did a new blood test and its all OK, so I know am going to push him to send me for a sleep test, as a friend suffered similar symptoms as me, and now uses a mask, and he says his life has changed dramatically.

I do think I really need to get this addressed as I am fed up with the fatigue. Don't think I'd be able to continue with shift work on top of OSA, as it will just grind me down.

Drumpot

I was one years ago, asked the public service consultant some questions as I wasn’t sleeping well with the machine and the he took me off the machine.

Went to a private sleep specialist but they said my apnea is mild and told me to use a Mouthguard. Since my jaw is sore I can’t really use it so was wondering if I could get my hands on a machine would it be worth it.

So my question would be How exactly can you manage your sleep apnea machine on your own? How do you know what setting or how many apneas your are getting? Do these machines do all the work or do you need to be monitored by a sleep specialist?

Andrea B.

https://www.boards.ie/discussion/comment/119887627#Comment_119887627

I feel for you. Are you health insured?

If not, and the cost is difficult on private overnight bed study, ask for a home test (same kit).

Aside, if you get on wait for a sleep test, be it public or private, advise them that you will take any short notice cancellations. Saved me a 2 month wait on private.

If you are positive and end up on machine, get back here for support.

Many drop off due to discomfort, but with support and guidance, I am there after 2 months and now look forward to masking up.

PS. Rereading. If you stop breathing in your sleep...those occurrences are apnoeas. You must get checked to find out the severity.

Andrea B.

https://www.boards.ie/discussion/comment/119887695#Comment_119887695

So, the rep from machine company told me that my consultant would set a pressure after looking a the monthly auto data from machine. She told me that other consultants, by default, leave machine on auto. Mad stuff, which says a lot.

As you have already been prescribed a machine, you could get an auto machine again.

There is an interesting forum where users post their machine data and get feedback from experienced individuals.

http://www.apneaboard.com/forums/index.php

Not saying this is correct route, but an option.

As an aside, it is a very active forum. For example, a very helpful bit of info I got was about loosening off mask (counterintuitive), so the cushion acts like a hovercraft skirt. For me, it was so effective.

NIMAN

https://www.boards.ie/discussion/comment/119887716#Comment_119887716

I am health insured, and hopefully it'll help when the time comes.

My gp is in NI as I work there and pay my taxes there, so hopefully like my mate I'll get a machine on the NHS, if it comes to that. He swears by it.

His test was a monitor that he took away for 24hrs from the local hospital, showed him how to hook it up to himself at bedtime I think. He had 90 occasions per night.

Andrea B.

https://www.boards.ie/discussion/comment/119887808#Comment_119887808

Great. I think they rate them per hour. 90 is extreme high and my friend had sameish.

I was 33. Above 30 is severe. Below 3 does not warrant treatment. Possibly farts.

trashcan

I was diagnosed a few years ago. Tried the machine on two separate occasions, for about 3 months each time. It was a living hell. I couldn’t sleep at all with the machine, which seemed to me to defeat the purpose. Usually ended up having to take it off at about 4 in the morning. My sleep still isn’t good at all, but I just could not take that machine. Was nearly having panic attacks at times with it on. It got so I absolutely dreaded going to bed. I’ll take a bit of tiredness over that any day.

Andrea B.

https://www.boards.ie/discussion/comment/119887898#Comment_119887898

Sorry to hear that. I believe that around 40% can not endure.

My friend had same for 6 months. For him, having a one-skinner before bed resolved it completely.

Btw, what was your apnoea score?

NIMAN

My mate hasn't got the full mask, just something on his nose AFAIK.

Says its no bother at all. Has changed his life.

Has anyone tried the mouth guards at all?

Drumpot

https://www.boards.ie/discussion/comment/119887935#Comment_119887935

I tried mouth guard and my jaw started giving me issues. I’d wake up like I’m gonna snap my teeth. Going to a osteopath to help the jaw (they think I have TMJ) and will retry the Mouthguard if it improves.

trashcan

https://www.boards.ie/discussion/comment/119887926#Comment_119887926

I think my score was 42, from memory. Thing is I don’t feel too bad generally. As long as I’m doing something I mostly am ok. Sometimes get a slump if I’m doing something a bit tedious at work, like working on a spreadsheet for a while, and my eyes can start to go heavy, but it doesn’t last long. I’ve tried all the different masks, even just the nose plugs referred to by Niman above. They weren’t quite as bad, but I still couldn’t get to sleep. Often felt as if I was suffocating. I also tried getting a custom mouth guard made, but found that pretty uncomfortable too.

nibtrix

I was diagnosed about 3 years ago, with an apnoea score of 53. I did the sleep study through a private consultant and they used the full testing kit with all the sensors stuck all over me... very tricky when you have to get up to go to the bathroom 😆.

I have the Resmed Airsense 10 which I rent, my monthly spend on the Drug Payment scheme is always over the limit anyway so essentially the cpap doesn't cost me anything. However I have used cpapstore.eu to order masks as Resmed only provide one a year which really isn't enough.

Like most people it took me weeks/months to get used to the mask, but at this stage I actually can't sleep without it as it has become such a habit. I went away for a night a while ago and decided not to bring it with me as I was sick of packing everything up and lugging it around, but I had the worst night's sleep i've had in years... hard to get to sleep, kept waking up etc.

After the initial diagnosis and before I received the cpap, the consultant did a second overnight study called a "titration" study, where they basically test out different pressure settings throughout the night while monitoring apnoeas, which was then used to set a fixed pressure (10 in my case). I'm still using the same pressure setting 3 years later as it's comfortable enough to sleep, while keeping apnoeas to a minimum. The auto setting will basically do the same thing, reducing the pressure as low as possible but then increasing it if it detects apnoeas. The only issue is that you have to experience the apnoea to trigger a pressure increase, so some consultants don't like the auto setting.

Gerard93

Hi

If you purchase masks from CPAP store.eu

Can you claim anything from

Drug Refund Scheme or will it only cover Purchaes within Ireland?

Thanks

blueoceanfreedom

The sleep nurse I attend is working with my doctor, and I only get to see her every 2 years. I'm still waiting on my prescription to order, but I think I'll go with cpap store.eu,as most people here seem to have bought there.

It's really great to have an Irish group set up, and I'm glad I came across this board. Information and help is not very good in Ireland. Will keep in touch.

Andrea B.

https://www.boards.ie/discussion/comment/119890769#Comment_119890769

You don't need a prescription to order from them.

Andrea B.

https://www.boards.ie/discussion/comment/119889128#Comment_119889128

No cpap purchases covered by drug refund afik. Only prescription rental.

Which is a very questionable situation. The renter's keep rolling in the taxpayers money on rental fees. Both for medical card and drug repayment scheme.

mondeoman72

I don't mean to preach, but if you need a cpap, then fecking use it. I was in the UK last week and like a dope, brought the machine, but left the power cable at home..... I had forgotton how bad I felt not using it and really do believe the damage untreated OSA causes. I was even ringing sleep clinics in the Uk trying to beg/borrow/buy one while over there.

I know it takes a lot of getting used to, but you just have to put up with it.

Andrea B.

For anyone willing to gamble on quality, there are masks available on Amazon, below the €60 mark.

Not saying cheaper is necessarily worse.

Andrea B.

https://www.boards.ie/discussion/comment/119891197#Comment_119891197

It does prove very challenging for some.

There are people with different levels of sensitivity ( and claustrophobia) to the point that a t shirt label freaks them. It really takes time.

Andrea B.

Would anyone care to comment on masks they have settled with?

Need to dig out my labels and comment later, as I have 3 now, but am finding the Resmed F20 the most favourable so far.

Only 8 weeks in.

blueoceanfreedom

Curious to know but, when getting your cpap with a European plug, do you get an adaptor or can you specify for a 3pin plug??

blueoceanfreedom

I have the Dreamwear under the nose mask with a pillow, and find it very comfortable. When I first got the mask it was with a full face, that is covering mouth and nose. I found this very claustrophobic and also my face was getting sore with rash like symptoms. I've had the pillow for 4 years and no issues.

For people finding it hard to get used to having a PAP machine, I found it helped to put it on for a while each day, it seemed to help getting used to breathing with it.

Andrea B.

https://www.boards.ie/discussion/comment/119897178#Comment_119897178

No option, so if Euro one arrives, I will replace plugtop.

blueoceanfreedom

Well I'm one very happy bunny, ordered my cpap Wednesday night from cpapstore.eu and as it was a fraction of the cost of buying one here, I paid for the fast delivery. Had it up and running Friday night and they also included an adaptive 3pin plug.

Seriously how can our health service allow this price gouging here, especially when people's lives are affected. All in and including delivery, plus hypoallergenic filters it cost just under 650 euro. For the same machine here they were looking for just over 1700 euro..seriously...

But for this board, I would have been very slow to purchase abroad, as they say if it sounds too good to be true..

So I can honestly say purchase without fear and save yourself a packet..

Andrea B.

https://www.boards.ie/discussion/comment/119926854#Comment_119926854

Well wear. I am due mine tomorrow by slowpost.

The drugs repayment scheme payed out €3.6M of taxpayer money to reimburse cpap rental in 2020.

That does not include what they pay out on behalf of medical card holders.

redsheeps

https://www.boards.ie/discussion/comment/119891182#Comment_119891182

Can you claim back tax relief on the device as long as you have prescription for it?

redsheeps

Could anyone who has purchased an AirSense 10 AutoSet Auto CPAP (card only) from cpapstore.eu post about where the machine was made? It says where it's made on the back near where the power plug goes in. The ones I've gotten from ResMed in Ireland are made in Singapore.

I've been renting from ResMed PEI in Ireland for the last few years and want to purchase as I've settled on this machine doing a great job for me. However, I've had some serious noise issues with the AS10 that has led to five AS10's being returned to ResMed in the space of about one year (each of these was made in Singapore and I'm wondering if there is/was a bad batch out there).

In fairness to ResMed they accepted all five them as all being faulty and gave me new ones each time without hassle. I've stayed renting because of my bad experiences and I didn't want to risk buying from abroad and getting a lemon that I have to send back but the cost of renting is adding up when the AS10 is definitely the machine for me.

Andrea B.

https://www.boards.ie/discussion/comment/119930506#Comment_119930506

Are you taking a big risk ordering same from abroad, irrelevant of where manufactured? Likely same component source.

My BMC G3 A20 just arrived and set up perfect. They also have quite solid reviews. The one I had rented worked a dream. That choice was solely based on what came from the boot of the rep's car and not a prescribed type, as the first type she pulled out wouldn't function.