Diagnosed with Sleep Apnea

[Awwy]

Hi

I wondered if you could get a CPAP privately rather than waiting on the NHS?

I have been diagnosed with sleep apnea and been told I would benefit from a CPAP machine. The wait is a long one!

Can you buy one yourself? Set it up? Etc...?

[Zelda5]

You definitely can and skip the middle man altogether. The place that diagnosed you should be able to help set it up. I'd call and make sure of that. I got an Apap so it's an automatic pressure and I didn't have it set to a certain pressure. Now I haven't bought anything online, as of yet. I will be ordering a new mask, one that Id like to try. I price checked the mask online and called around the local med supply shops and I'd save around $30. Someone recommended CPAP.com to me and from what I could tell they had good reviews.

[Awwy in reply to Zelda5]

Thanks. I was diagnosed in a routine pre-op. But that hospital is outside of my area as it is specalist in my condition. I dont know what to look for?

[ostiad in reply to Awwy]

Hi Awwy, when you say you were diagnosed at your pre-op, how did they come to that conclusion, did they just guess due to your symptoms? I have sleep Apnea and to find out if I had it or not; firstly I had to wear some equipment, one night only, took it back next day, when they were able to obtain a reading and look at the details, then they were able to explain about it. If I can be of any help just reply. Good luck with it x

[Awwy in reply to ostiad]

Hi. I wore a device at night as I scored high on the symptoms chart. I havent slept well for years. GP never took any notice but it makes sense especially with my fatigue. I got my report in it was in there. X

[ostiad in reply to Awwy]

Awe that's good that you've had a test, it just looked like at your pre-op, that they thought you had it. Equipment is so very expensive if you have to buy it yourself. Is there a possibility that you could contact the sleep clinic and explain about your surgery?x

[Awwy in reply to ostiad]

I know it is so expensive. I just want to move forward to be honest and I've decided to take my own steps to move stuff along. I'm under care of lots of different consultants for multiple issues and this is just another one on top of everything else. Thank you so much. My brother has offered to pay for me and then I can pay him back.

[ostiad in reply to Awwy]

That's really good of your brother, however, also make sure you are getting the right size mask too. Someone further up the discussion mentioned 'Hope to sleep' this is a great forum and Kath the originator is fabulous, you'll get plenty of help in there too x

[Awwy in reply to ostiad]

Thank you. I havent slept properly for about 8 years! I'm totally exhausted all the time. I spoke to a lady yesterday on medres she was very supportive and explained how to measure for a mask and the right type as I breathe through my mouth in my sleep at some point and not my nose. So need the full one.

I've done all the sleep hygiene stuff. I use the Da Silva method to fall asleep which is brilliant as im usually gone before that finishes. I also have white noise to fall asleep. So I have conquered falling asleep. Its just staying asleep now. X

[ostiad in reply to Awwy]

Sounds like you've done your research and got most aspects covered, although, in my experience don't expect it to be a magic remedy to your sleep problems. Good luck with it, it takes time to get used to the machine/mask etc. and hopefully you will get some quality of sleep xx

[Awwy in reply to ostiad]

Thank you. She did say I need to persevere with it and not expect a difference in short term. X

[mauschen in reply to Awwy]

You really should be diagnosed by a sleep clinic. Whether that’s a home testing unit or a sleep over in the clinic.

There are different types of sleep apnea and a diagnosis will determine your treatment plan.

Meanwhile, check Resmed. Uk for equipment costs. However, should you need a machine, the NHS will provide one.

Philips dream machine or something like that is an alternative to Resmed but as far as I am aware, NHS only use Resmed.

[Maglynne007]

hi, I was diagnosed with sleep apnoea October last year and finally got my apap machine 2 weeks ago. Have you asked how long your wait is likely to be as I believe there was a problem with supply. I think you will definitely need support from a professional - I found trying to adapt to wearing the mask quite stressful and worried I wasn’t wearing the mask correctly (I may ask if I can try a different design mask). I have a telephone appointment mid-September (I think they are going to download information from the machine as I have to be with the machine during the phone call - although I’m not sure.

There is a charity called “hope2sleep”. Perhaps you could contact them for some free advice and ask them any questions you may have.

Good luck.

[Awwy in reply to Maglynne007]

Since June which I know doesn't sound like a long time but my op is delayed because of it 😒. I have been waiting for that for 3 years now.

[mauschen in reply to Maglynne007]

Have you tried Nasal pillows instead of a face mask? It depends on how high your pressure is however, I have been using for 7 years without any problems.

[Maglynne007 in reply to mauschen]

Hi, thanks for the suggestion. My machines starts low at about 4.5 and has increased through the night to about 14.5 which I find very uncomfortable and can’t tolerate it as it seems to forceful. I’ll be discussing with the nurse in my phone call on 19th Sept. Will have a look at the nasal pillow.

[FerdyOne]

You might be best to wait. I was diagnosed about 15 years ago. I was first issued with a diagnostic machine for a week. Took it back for the card to be read, which then informed what pressure my permanent machine would need to be set to. (Mine is from ResMed but your local hospital might be using another maker. )

[Awwy in reply to FerdyOne]

Ok that sounds sensible. Its just another condition to add on now I havent slept properly for years. So another year or so waiting won't make that much of a difference. Thank you

[FerdyOne in reply to Awwy]

So sorry about your wait ☹️. Quote from an article: "Medical device manufacturers are struggling to meet the needs of patients because of increasing difficulties in procuring a sufficient supply of semiconductor computer chips, which are essential to produce medical devices such as blood pressure monitors, glucose monitors, and respiratory care devices, including CPAP machines and ventilators. " I googled 'is there a shortage of CPAP machines.' You could buy a machine from ResMed the AirSense™ 10 AutoSet

shop.resmed.com/GB/en/cpap-...

[Awwy in reply to FerdyOne]

Thanks ill look into this

[Awwy in reply to FerdyOne]

Hi

I spoke to a really lovely women called Sarah and she was brilliant. They have a clinic in London too.

Thank you so much for this. I really appreciate it. X

[FerdyOne in reply to Awwy]

Hi, very glad to have been of help. I hope you get on well with the machine. I have the humidifier added to mine, although I do wonder how much difference it makes. Feel free to contact me again with any queries you might have.

[Awwy in reply to FerdyOne]

Thank you I will do. X

[FerdyOne in reply to Awwy]

A further thought. The machine comes with the facility to send reports via a network. In my case my local hospital have full details of my daily usage. When I had to reapply for my driving licence aged 70, the DVLA wrote to them to get a report which was satisfactory. You can create an account, which enables you to see your daily figures.

[Awwy in reply to FerdyOne]

Thats good. Will look into it. X

[CapnM]

I recently self- diagnosed myself with sleep apnoea and took the private route instead of waiting for NHS, here is my guide.

You can absolutely do this privately and self managed, with a couple of caveats,

1) If you have a complicated form of sleep disorder or health conditions you may need professional advice ultimately. Of course you wont know that now but good to recognise this. For classic obstructive sleep apnoea (including my severe 60 events per hour which I had) you can manage this.

2) I would say to truly benefit and optimse this you need to be comfortable taking the SD card out the CPAP machine and using software found free online (Oscar / Sleep HQ) to review your breathing and events and to be able to calibrate settings your machine (called titration). Its not too difficult but can be initially a lot to take in. But about 50 hours over 3 months on You Tube will get you enough learning to be competent at this. You can progress self management without this but you might struggle to optimise or understand what is going on when inevitably you have challenging nights. CPAP is therapy not a cure, its the gold standard for treating OSA and results can be incredible but there is an optimisation between control (reducing events) and comfort.

I used Intus Healthcare to order an overnight sleep test (PAT watch test), got kit within 24 hours , results within 36 and was using the equipment within 4 days. Their helpline will help review results and order the right kit for you. Other companies exist. 1st night I had the best nights sleep in a long time and felt great, from there it just gets better. 3 months later and I feel amazing, like I had a total body transplant. I have reversed 15 years of deline and what I had assumed was symtoms associated with getting older. The watch test alone can be empowering, it can put you in control and potentially even be given to your GP to persure an NHS route.

But if you are moderate to severe you will probably opt to go straight to ordering kit. Expect the test + kit to cost you £1k, plus £100 to £200 ongoing annual costs (mask replacement etc).

Reputable companies will only sell you an auto pap machine on a sleep test, but this is no bad thing. I went with Resmed autoset 10 which is a fine starting point, masks are generally universal so you are not stuck with their masks though I get on well with them anyway.

There is so much I could say but my initial summary is;

- don’t wait or put it off. OSA is a killer in the long term and above all you are living with reduced quality of life. CPAP could change you life in ways you have yet to dream of. ALso OSA has a range of symptoms and consequences so some general health issues may get better.

- If you have the money go private - at least initially - you can always switch through NHS at a future point. Being 53 I decided to self fund for 10 years then consider going NHS when I retire assuming NHS in a better state. Its the best £1k I have ever spent.

- There is a wealth of good content on You Tube. Try the Australian guy Nicko on Seep HQ / CPAP reviews or Lankylefty who is US based. Watch their general primer videos on CPAP. To come back to UK Vik Veers who is an NHS ENT DR at Royal London Hospital (or something like that) has some useful videos.

In the short term , see if side sleeping on you left side can help, it can significantly reduce OSA events (it halved mine in my test) and may give you some comfort. You can find out more about this online.

If you have any further questions, feel free to DM me.

[CapnM in reply to CapnM]

p.s. I see you have an interest in or diagnosis for hypothyroidsm. I do too and spent a few years misunderstanding the overlapping symptoms between these too conditions. Ultimately uder active thyroid was exacerbating/ triggering OSA and changes to my levo dose fed through to changing OSA symptoms encouraging me to focus on my levo dose rather than treatment for OSA. If you look at my post history I wrote this up a couple of months ago. good luck.

[Awwy in reply to CapnM]

Hi.

Thank you so much! This is fantastic. Your advice is invaluable. I can't remember the last time I have slept through a night must have been at least 14 years.

I can only sleep on my left hand side.

I have had the watch sleep test on NHS and have the report. I was trying to figure out which machine to invest in and measuring for mask which I have figured out.

I'm seeing my endcrologist for the first time tomorrow. Took me 18 months for an appointment. I have a list of questions to ask.

I have severe endometriosis and was on GNRH therapy which is known to affect thyroid too.

Hypothyroidism- I have the antibodies but not on any medication for it.

I also have mixed connective tissue disease which are 3 separate autoimmune conditions.

My body is in fight mode and the continuous sleep problems added in dont help.

I will look in to Vik Veers too.

Thank you again for taking the time to reply to me. X

[CapnM in reply to Awwy]

glad to help. A couple more points whilst I faff around on a bank holiday.

- your NHS report may be enough to get a machine privately, good companies follow a self regulating code of conduct for not giving the machines out without a diagnosis/ prescription. If not you may have to do a sleep test. Call and ask.

- in terms of machine suggest look at Resmed or fischer & paykel. Resmed is a market leader and widely available here. Functionally the machines are virtually the same but their algorithms that detect and respond events can differ. But to be honest you are not really going to master the relevance of this level of detail as a beginner so just jumping in with the market leader and one that NHS use is a good place to start. I saw above you favour a full mask, this is a good place to start for anyone regardless of what you migrate to over the years. The resmed F20 and F30 are both good masks. I have both as it helps to switch things around now and again but also wanted to trial different masks from the getgo. Some people try many before finding their favourite. But even if you go down the nasal mask route ultimately you will always need a full mask for when you get a cold/flu etc.

If you go for resmed autoset10 which I have here are my leanings.

1 - the myair app isnt very useful. The scoring metrics are little more than you can see on the machine's screen. For example it gives you a score based on how many times you took the mask off - well I know that cos I woke up! If you are going to self manage through SD card / PC software then you will have vastly richer data over the myair app anyway. But I would recommend the myair app for a older or less confident person who didnt feel they could self manage through uploading results to a PC. Also there may be others reasons for having an SIM enabled machine but best to check that with the company sourcing machine from.

2 - skip the humidfier and climate control for now to save money, we dont have the climate that arizona has. only buy it once you understand whether you would benefit from it or over heat your house in winter. Its just extra cleaning & hygiene, purchasing distilled water and having water by an electric applieace. You may likely have dry mouth initially but this just as likely to go away as your body adapts to therapy. Only get a humidifier if you have ongoing problems or (say) have excessively dry house in winter.

3. Do buy a sample pack of remzzzs cotton liners for your particular mask. Dont chuck them away every day as the pack says - thats expensive. Wash, iron and reuse. They can be quite useful and you will learn how/why in time.

p.s. The reason for going private isnt just to accelerate time. You can read all about it on you tube in time but there is a persuasive debate for self empowerment for CPAP therapy as opposed to waiting on an annual NHS check up like the poster above/below. Often quoted figure online but 1 in 3 people ditch CPAP therapy as they struggle to attain the benefits, many of these people are ones sent home after a sleep test with a machine with little instruction or leaning on how to optmise their therapy. Some ENTS & sleep techs will not like you talking control or callibrating your machine - may even refuse to treat you if you do but as you will see online many do. Taking control of your learning, maks, and machine callibration is empowering especially with the hot mess of an NHS organisation we have right now.

pps Vik Veers video on OSA and weight management is good. He talks about how your body responds to OSA shocks by pumping our cortisol and going into fight/flight & hibernation mode. very interesting regardless of whether you have weight problems with OSA.

[Awwy in reply to CapnM]

Hi,I think you are going to fast be my go to person! I decided to go for a full mask because I know I switch to breathing through my mouth at some point and my throat is extremely dry. I then wake up to have water several times.

I have ordered the resmed bundle. There was an offer on it and I got a further 5% off.

I ordered the f20 mask initially and see how I go.

Im very tech savvy so im sure the more I learn about it I will hopefully adapt.

I do think my body is in full fight mode hence all these issues have surfaced. I had a very stressful job for 12 years and then when covid hit it was full on. I ended up collapsing several times and then being diagnosed with lots of conditions over the past 3.5 years.

I have changed jobs now and there is no stress at all. However I'm homebound now as I really struggle with fatigue and pain.

Im only 41 but my body feels like its 80.

🙄

[CapnM in reply to Awwy]

sorry didnt mean to overwhelm you! thyroid and OSA hastened an early end to my professional career. I now own a BBQ shop which is much more fun and enjoyable thoguh not as lucrative.

you made a good choice, anyway its over to the experts now. But do reply or DM if you have any questions.

I would start with these videos, Nick he is a brialliant guy to follow and has many videos on the subject. It is a lot to take in and I watched many twice and after time even went back over a third time sometimes.

Part 1 - 12 minutes - general overview

youtube.com/watch?v=3QolH2H...(Not working as expected?)

Part 2 - 10 minutes - how to operate user display screen and run through of menu options.

youtube.com/watch?v=FQXS7Lu...(Not working as expected?)

Part 3 - 10 minutes - clinical menu

When you get your machine it will be set up in auto pap mode which is a fine starting point but over time and through the videos of a guy like this you will learn to titrate your therapy through callibrating the pressure. Thats where part 3 comes in.

youtube.com/watch?v=qIfHud8...(Not working as expected?)

[CapnM in reply to CapnM]

one more thing, one of the most common user problem with the F20 mask is people do not sit it high enough on their nose otr start in the right place but foget in the first few weeks. To work best and avoid air leaks over your eyes the top of mask needs to be on a level between your eyes, it sounds unfortable but its not, further down sitting on the bridge of nose can lead to air leaks and nose pressure marks. GL

[Awwy in reply to CapnM]

Thank you so much Not overwhelmed just glad I have got the support and answers to many questions. Can't wait to try this machine out.