Introduction & require advice please

[Zokaluse]

Hi,

I posted the below quoted on the ‘newbie requiring success stories please’ thread & after reading through more threads would appreciate things I should ask,check etc at my appointment on Wednesday. I’m in the UK so don’t think I get a choice of machine but think I do get a choice of mask.

I have to force my mouth shut as I have an overbite with set back small lower jaw & even when I manage a yoga class I go dizzy if I consciously breath through my nose.
I settle to sleep on my side or tummy or a position between the two & wake up on my side of tummy but I think I do move a lot so end up on my back at some point (my sleep study showed I do sleep on my back at times).
I have to be perfectly comfortable to get to sleep & my husbands snoring (he’s had a sleep study years ago for sleep issues that were mainly imagining things in the room & not remembering it the next day & being very tired all the time..I’ve woken to him hovering over me with the duvet tucked in...nuclear bomb gone off & he’s protecting me, him lifting me up in the air ..the beds on fire, he got his sleep study when our daughter was born 10 years ago & I said it wasn’t safe for him to be in our bed with her in the cot next to me coming into bed for middle of the night feeds, he woke from the study saying he was exhausted & had hardly slept, they said he’d slept for 8 hours but acts out his dreams & he was given medication..I’ve told him to go for another sleep study as those episodes are much much less but oh my the snoring, but he does have terrible hay fever 🥵 too) anyway I digress ... I’m worried that I’ll struggle to get to sleep even more with the CPAP & add in his snoring (I’m petite & my ears are that tiny that I’ve never found an earplug that stays in) so is there any advice anyone could give on all these points please ... I want to go to my appointment as prepared as is possible as I’m excited to start but want to give myself the best chance of success. I am willing to buy my own machine if the NHS one works but there are better machines to buy.

“Complete newbie first post after finding this forum searching for information.

I was diagnosed with hypothyroidism in 2009 after being rubbish after my youngest daughters birth, started treatment & felt a bit better but never got me back.

6/7 years ago I took a turn for the worst..aching joints, exhausted, sleeping 12 hours & then napping on the sofa, no libido, lack of interest in anything, poor memory, miserable, grumpy, irritable, hardly smile & when I do it’s fake as nothing cheers me up or interests me.

Been passed from pillar to post with change in level of thyroxine many times, told I’m Vitamin D deficient take a high supplement, told I’ve got over sensitive brain nerves causing all my issues, lupus by one doctor No you haven’t by another & he insisted was b12 deficiency which came back correct & he said was PA so inject b12 often but I still lay around doing nothing most of the time bar the odd good day or week when I get out & about but then feel worse afterwards!

I’ve always been a snorer & 3 years ago had a deviated septum corrected but still snored.
Should’ve had braces & head gear as a teen for my overbite & too small jaw but wouldn’t but now at 45 I started the process myself with braces. Saw a maxillo facial guy for my continued snoring who said it was probably my too small too set back lower jaw causing it but to do me a mandular splint he needs me to have a teeny bit of sleep apnea to fund it so a sleep study is arranged & I think no way have I got it so it’s going to be a waste of time.
Turns out I have moderate to severe sleep apnea & he can’t do the splint as I need a CPAP at the next level up of treatment & he thinks all my long lasting health issues are down to sleep apnea & I’ll be like a new person (or just the old me would me good!) once I’m consistent withtreatment which he said I must use to save my life.”

[rick blaine]

Hi Zokaluse,

If you say you've already had a sleep study, I'm assuming that was with the NHS – ie, you've been to the sleep-medicine department at one of the foundaton trust hospitals near you, and they've had you do a sleep study – most probably an 'at home' one – because that's what 90 pc of UK patients get assessed on, although given your history, an overnight in the hospital's 'sleep lab' might have been justified. And I note that you have been told you have 'moderate to severe' sleep apnea – which means an Apnea-Hypopnea Index at between 15 and 30 - which fits because NHS policy is to only treat 15 and above.

Your first 'fitting' appointment should be at least 30 minutes – and you'll be shown how to work the machine and hopefully, you'll get to try on a number of masks with the machine running, to find the one that best fits and works with you. I say 'hopefully' because that used to be the policy at most foundation trust hospitals, but over the last few years, as GPs have become more familiar with the idea of CPAP, and have found that it works and is cost-effective, they've been sending more and more patients. And busy sleep-medicine department staff have been forced into giving shorter appointments.

You are right when you say you won't have choice over the machine. Most SMDs in the UK standardise on one brand rather another, and within a brand range, on one model rather than another. And some SMDs stiil follow the NICE guidelines which still say that a fixed-pressure machine is adequate. But in many areas now, the consultants have realised that a more expensive but more flexible, pressure-adjusting machine makes for better treatment. Equally helpful to case management is to issue patients with machine which can 'phone home' to the sleep-medicine department via a built-in cellular-phone chip. You'll find out which one they give you on the day.

You are also correct in saying that, if the policy in your area is to issue a limited-feature machine, you can buy your own. The current best recommendation is the ResMed 10 Autoset for Her with built-in humidifier – £680, but no VAT. Should be good for at least five years. If the staff at your sleep-medicine department are like mine, they will quite happily fill in the prescription form for you. And the people at ResMed UK are most helpful. For all sorts of reasons, it's better to buy direct from them. And tell them Rick sent you.

[Zokaluse]

Thank you for reading through my ramble & your detailed response.

Yes it was an at home one, first one failed as the finger equipment fell off my finger so second one it was put on my thumb (I’m petite) & that’s when I received a letter to say moderate to severe sleep apnea (was just a CC of the letter the respiratory team sent to my GP) & I’d been expidated for CPAP. I called the CPAP department a few weeks later & they made my appointment then (was a 9 week wait as they only hold them on Wednesday mornings & were full on both group & individual sessions) & I was told it would be 2 hours long. I then saw the maxillo facial consultant who’d referred me for the sleep study last week & he told me I had to continue along the path of orthognathic surgery privately (as I’d started the braces process) as he couldn’t do the trial splint then the jaw operation as it was more important for me to use CPAP to save my life then make my face symmetrical. He then changed tack from saying my jaw was causing the apnea to saying my hypothyroidism has probably caused it by weakening the muscle around the thyroid. He said the only way to know was to have another sleep study once I complete my Orthodontist & Orthognathic treatment.

I shall give the CPAP my best effort but I won’t be spending on my own until I see it is actually giving me my quality of life back (had so many backwards & forwards between various consultants that until I see & feel better I can’t trust that this is actually the case of my poor quality of life but am hopeful as I fit all the symptoms)

[rick blaine]

Hello again, Zokaluse,

You say you have a nine-week wait for that 'first fitting' appointment – which nine-week wait, I take it you are somewhere in the middle of.

That just shows how busy the sleep-medicine department in your area is. Eight years ago, I had to wait only three weeks for the appointment to give me the sleep-study kit to take home. And my treatment started – ie, the 'first-fitting' appointment was – the next day when I took the sleep-study kit back, and the SD card showed that I qualified.

Obviously, things are different now. And I can't tell you what they will do on that two-hour session.

In my area, and eight years ago – when issuing people with a fixed-pressure machine was the NHS norm – what the sleep-medicine staff would do at that first-fitting was to give you an auto-adjusting machine to take home and use for a week.

Then you'd bring that back, and the sleep-medicine staff would read the SD card to see what pressures you'd used. In particular, they were looking for the pressure you were at or under for 90 per cent of the time. Then, they would use that pressure to set the fixed-pressure machine they would give to you for on-going use.

As I said, that was eight years ago. And I don't know what they will do at that appointment in your area.

In general, and now, in many of the 150 foundation-trust-hospital areas, the consultants have realised that the slightly greater cost per patient of an auto-adjusting machine is worth it in terms of patient compliance and treatment effectiveness.

And to cut down on the number of times a patient has to come in for follow-up appointments, the machine given at that first-fitting – and for permanent use – is both auto-adjusting and has the cellular-phone link built into it. Your progress can be read by the sleep-medicine staff on the 'up-link' from your machine to them, and the finer parameters of your treatment can be adjusted via the 'down-link' from them to your machine.

I can't comment on the other stuff you say – about this surgery path vs that surgery path – I'm not qualified. But I do have one piece of information and one comment.

The piece of information is: if by 'splint' you mean a plastic dental device to hold the jaw open and the tongue forward, then you should know that such devices are generally not very effective in cases with an AHI above 15 or so. APAP is still the 'gold standard' for treatment above 15.

And the comment is: hypo-thyroidism can by treated by medication – the way it is for people who've had a thyroidectomy. Unless there are preventing factors, that might be worth exploring in your case.

And lastly, it may be that – even after surgery and even after hormone-replacement treatment for low thyroid – you'll still need sleep apnea treatment. The diagnosis of moderate-to-severe sleep apnea pretty much mandates it.

[Zokaluse]

My appointment is tomorrow, it was made 9 weeks ago.

I will update with what my appointment entailed & update my profile with the machine when I get home tomorrow. I’m in Surrey so can see how areas/time has made changes.

I am treated for hypothyroidism, been on levothyroxine for just over 9 years. I also get b12 injections every few weeks for Pernicious anemia. I also take all the reccomended vitamins for hypothyroidism & D3 as I’m deficient in that too. I’m still exhausted, fatigued, miserable .. all the symptoms I put in my original post, so I’m really hoping this CPAP sorts me out as the maxillo facial guy thinks it will.

It was a mandular splint to pull my bottom jaw forwards as it’s too far back & when I first saw him he said just looking at me he knows my jaw is the cause of my snoring but after the study he blamed it on the thyroid weakening the muscle around it meaning it collapses when I sleep causing apnea.

We’ll see & im very hopeful as been passed from pillar to post with you’ve got this, no you’ve got this & so on blah blah blah even had my gp arguing with a consultant & vice versa, it’s been diabolical so maxillo facial guy said I definitely have sleep apnea no argument & he thinks I’ll be a new person once I start CPAP, I hope he’s right.

[Zokaluse]

Hi Rick (& anyone else reading)

My appointment was just shy of 1.5hrs & she covered everything from diagnosis, SS reading, machine step by step instructions, cleaning, tips, improvements I should expect (this bit made me tearful as I really really hope she’s right) & contact details to call at any point.

I’ve added the machine to my profile but not my mask as she took them out of the packet & packed the unbagged mask selected into my case. But it’s not the one that is for the machine as that one was too big on my face & dug into my eyes so Ibe got the one from the previous model as that came in extra small & was perfect fit & not as bad as I thought. It goes over my nose & mouth & the straps go around my head.

ETA: Mask now in profile & my machine is humidifier capable but none fitted so I’ll buy one if I need it.

My letter said moderate to severe but on the paperwork it was an AHI of 12 which seems nothing to what most on here have. She said my hypapneas were higher & my heart rate goes too high. She did say I’ve probably had it for years & it’s all enough to give me my many symptoms that I should see an improvement in pretty soon.

[Spot123]

Hello,
Hope you get some relief soon! Don't know NHS policy on masks, but know that many people have to try different masks before finding the one that works for their facial structure so if the first one doesn't work, try something different. I started in October and am on my 3rd/4th one. Check to see if your machine has an SD card in it to record the data. If not, purchase one to use in the machine. If you get instant relief, that's great. If not, you may want to use outside software to decode the data to compare to your sleep experience. You may have seen others on this forum refer to Sleepyhead software that can interpret the data and make the pretty graphs.
Good luck!

[Zokaluse]

Hello,
Hope you get some relief soon! Don't know NHS policy on masks, but know that many people have to try different masks before finding the one that works for their facial structure so if the first one doesn't work, try something different. I started in October and am on my 3rd/4th one. Check to see if your machine has an SD card in it to record the data. If not, purchase one to use in the machine. If you get instant relief, that's great. If not, you may want to use outside software to decode the data to compare to your sleep experience. You may have seen others on this forum refer to Sleepyhead software that can interpret the data and make the pretty graphs.
Good luck!

Hi,
Yes I’ve read & was also told by the clinician today that it may take a few til I’m perfectly good with one..I will be limited though I think as I’m very petite (have to buy kids sunglasses etc) but if XS’s are available I should be good.
It does have an SD card yes.
I will be using the my air app as that’s the details I was given today but I’ve also read about sleepyhead so will get that too - thank you.
Thank you for the good luck

[rick blaine]

Hi Zokaluse,

They've given you a good machine, one that is auto-adjusting. that collects a full range of data and details about what happens when you sleep, and one which takes an easily-attached humidifier – all good news. And the ResMed range of masks is also good. The F10 is the latest one to be added to the range.

It sounds as if the doctor or specialist nurse or sleep physiologist – whatever her job title – covered a lot of ground. The thing now is to start using the equipment, and to deal with any 'adjustments needed' as they come up.

One tip I give to any newcomer to APAP – whatever the glitch or difficulty (apart from immediate mask fit) give it three or four days before you change anything. The upset may be a one-off. On the other hand, if it's still happening on day four, then you can start looking for solutions.

You mention buying a humidifier. As I said, the best place to buy is direct from ResMed. The phone number for ResMed UK is 0800 907 7071.

They have a club you can join – there's a one-time fee of (if I remember correctly) a tenner. And for that, they e-mail you regular info. And you get 5 per cent off many items when you buy from them. You might, for example, buy spare headgear, so that when you wash it, it doesn't have to be dry the same day.

And in case you're wondering, buying and using anything from ResMed does not affect your standing with the NHS in any way.

[babydinosnoreless]

Welcome. I have been reading your thread but as I am not in the uk, I didn't have any helpful suggestions to share until now.

I found that making friends with my mask while awake and alert makes going to bed less stressful. Put on your mask and watch tv or read a book or something else you find relaxing. That way when you go to sleep with it, it will not be a terrifying stranger on your face.

Good luck !

[Zokaluse]

Thank you both.


She was a Respiratory nurse & so lovely! I looked on res med website & the humidifier isn’t as expensive as I thought so can get that soon along with the clear air hose & extra head gear. Thanks for that last tip I was wondering how I’d dry it in time through winter.

I did go to bed 20 minutes earlier last night (I often struggle to get to sleep in bed at night but I had 1 of my awful headaches yesterday so I got to sleep easier) & read with the machine & mask on as the nurse had reccomended that too & said all her tips come from other patients so she likes to pass them on & I told her about this site & she was impressed.

Well I’ve had my first night & because of my headache I did get to sleep easier & I’ve still got it today (day 3 now) but off for electric acupuncture in a few hours to see if that can shift it - had normal acupuncture & an acupressure massage yesterday & it shifted it from the whole head but left it on one side & I didn’t have time to add on the electric & was hoping it would be gone today. The nurse set it to ramp for ten minutes & I read for around 15 then got to sleep pretty quickly. I did wake a few times with the unfamiliar feeling but not for long then I woke at 6:30 with lots of air coming through the hose & middle of the mask (edges were fully sealed & nurse told me that was ok) but I couldn’t get back to sleep with it blowing so much on my face. The machine showed I had it on for 5.5 hours & she’d said I could take it off after 5 if I needed to so I did.
I then slept until 8 & wanted more sleep but couldn’t get there so got up & I'm not as grumpy as usual first thing & I wanted something to eat which I’ve never eaten breakfast unless I’ve got a hangover or it’s a few hours after waking & doing something! They are the only difference’s & of course I still have my headache so that doesn’t help.

Off to look at MyAir to see what that says about my nights sleep.

ETA: Photo of my first night My Air scores... pretty impressed I am

[Zokaluse]

My first two nights on CPAP. Would appreciate a knowledgable eye to say if all is as expected...CA is a little concerning as only OA was noted on my sleep study report but after a little search on here I see it depends on other graphs but I couldnt fathom it out.

Yesterday I felt more alert than most days, was on the go all day, didnt forget any of my daily tasks, nor did I sit down for longer than to eat & drink and watched 1 TV programme (usually flop straight on the sofa after getting up, napping and watching TV with the odd forced movement for important things to do), went to bed at a regular reasonable time at the end of the day which was lovely (Not usual for me at all, I'm usually up until all hours). Over the years Ive been like this I do have the odd good day or even week but yesterday felt different in that I wasnt full of energy I just felt motivated and had the energy to run errands, do washing etc and then felt naturally tired at bed time after a bath.

Night one

screenshot-20190412-181738.png (121.81 KiB) Viewed 1420 times

Today I awoke wishing I was still asleep, couldnt get back to sleep (builders noise & light through windows) yet I'd had more sleep that yesterday. I again didnt feel the need to spend the day on the sofa and ran errandes etc whilst feeling a general tiredness all day...I could go to bed now but have to go out for dinner with the family as no ones had dinner as can't get to our kitchen area with the newly laid floor...but i'll be having a bath and going to bed when I get home! (that's another thing...bath before bed...haven't done that for years as the thought of running it, washing my hair, drying my hair etc daunts me so just a quick wash at bedtime with a quick shower at some point in the day)...not the last two days which feels good as I always used to shower of a morning then have a lovely hot bath of a night & that's been the case the last 2 days.

Night two

screenshot-20190412-181821.png (122.29 KiB) Viewed 1420 times

[rick blaine]

Hello again,

When the auto machine comes from the factory, it is set at 'wide open' – ie, minimum pressure 4 cm, maximum pressure 20 cm. But since you mentioned the machine having been set with 'ramp' enabled, I auumed that someone – the nurse? – had set the minimum higher than that 4.

The idea of 'ramp' is that you can have it start at a low pressure and gradually build up – over a time chosen by you (from 5 to 45 mins) – to get to that pressure. During which time you fall asleep.

But what the charts show is that your machne is still at wide open. Ie, 4 cm. So ramp would do nothing for you with the minimum setting as it is.

Now, it may the nurse is running the following protocol: if you leave the machine at wide open and use it for four or five nights, you and the nurse or whoever will get to see your average pressure (here called 'med'; for median). And by way of first improvement move, the minimum can be changed to your average, or just below your average.

Your median across two nights is 6.30. It's still early days, but you might benefit from the minimum being raised to 6.

Was anything like that said to you?

I ask because we're getting into the area of: is it ok for patients to change or adjust their own settings?

Clinicians in the UK rather frown on patients changing their pressures. Some even forbid it outright. And they do so because of 'duty of care'. And also nowadays, they increasingly worry about being sued.

(The reality is, with these modern machines, patients are very, very unlikely to come to harm.)

Patients in the US take a more independent view. For one thing, every medical consultation incurs a charge – which their insurance company will pay most of, but not all. The patient has to pay the rest - the 'deductible'. (Which, I understand, goes to the insurance company.)

And sometimes there's even a payment made direct to the medical provider at the time of the consult - rather than weeks or months later. Presumably to help with cash flow. This direct payment is called a 'co-pay'.

You can see why US patients might wish to self-manage their treatment as much as they can.

You do not have that financial problem. But I have to ask, before I might make any suggestions: what did the nurse say to you about follow up? And about the possible changing of pressures on the machine? Are you required or expected to go back to the sleep-medicine department within the next few weeks?

[Zokaluse]

Hello again,

When the auto machine comes from the factory, it is set at 'wide open' – ie, minimum pressure 4 cm, maximum pressure 20 cm. But since you mentioned the machine having been set with 'ramp' enabled, I auumed that someone – the nurse? – had set the minimum higher than that 4.

Thanks so much for replying Rick, I appreciate it greatly! I will find out her true title when I next to speak to her but for now we’ll say the nurse!

The nurse told me she was leaving the machine at automatic pressure which was between 4-20. She then told me she was setting the ramp to ten minutes .. she said this was a comfort mode to allow me time to get used to it & could be set between 5-45 minutes. She felt 10 minutes was just right for me to have the mask on & be reading or watching tv etc explaining that the machine would decide the pressure I needed starting low & building up as time went by. First night there was only a little bit of air from the inner mask & tube area on my face but last night I fiddled with the mask lots as there was lots of air from those areas on my face, I got it to a comfortable level & then when I awoke today I had a bright red, very tender nose so I’ve loosened the mask without the machine & will adjust again if need be when I get into bed in a minute. (Weird that myair shows 20/20 for no air leaks & 5/5 for apnea’s where as sleepyhead said the apnea’s ‘are not good’ & showed leaks. 🤯

The idea of 'ramp' is that you can have it start at a low pressure and gradually build up – over a time chosen by you (from 5 to 45 mins) – to get to that pressure. During which time you fall asleep.

But what the charts show is that your machne is still at wide open. Ie, 4 cm. So ramp would do nothing for you with the minimum setting as it is.

Yes she set it for 10 minutes .. I’ll be calling her & leaving a message tomorrow asking her to explain again.

Now, it may the nurse is running the following protocol: if you leave the machine at wide open and use it for four or five nights, you and the nurse or whoever will get to see your average pressure (here called 'med'; for median). And by way of first improvement move, the minimum can be changed to your average, or just below your average.

Your median across two nights is 6.30. It's still early days, but you might benefit from the minimum being raised to 6.

Was anything like that said to you?

No she never mentioned that, she said the machine would decide the pressure needed.

I ask because we're getting into the area of: is it ok for patients to change or adjust their own settings?

Clinicians in the UK rather frown on patients changing their pressures. Some even forbid it outright. And they do so because of 'duty of care'. And also nowadays, they increasingly worry about being sued.

(The reality is, with these modern machines, patients are very, very unlikely to come to harm.)

Patients in the US take a more independent view. For one thing, every medical consultation incurs a charge – which their insurance company will pay most of, but not all. The patient has to pay the rest - the 'deductible'. (Which, I understand, goes to the insurance company.)

And sometimes there's even a payment made direct to the medical provider at the time of the consult - rather than weeks or months later. Presumably to help with cash flow. This direct payment is called a 'co-pay'.

You can see why US patients might wish to self-manage their treatment as much as they can.

I feel for US patients & have for a long time, having friends there I know how it works & to them it’s normal & I really hope 1 day they get fairer options.

You do not have that financial problem. But I have to ask, before I might make any suggestions: what did the nurse say to you about follow up? And about the possible changing of pressures on the machine? Are you required or expected to go back to the sleep-medicine department within the next few weeks?

I go back in 6/8 weeks, I’ll receive a letter. I’ve looked on the machine & I don’t seem to be able to do anything other than a mask fit test. I do have a phone number direct to the nurses station to call with any questions & she said 9/10 times they’re with a patient so don’t answer therefore to leave a message & I will get a call back the same day or the Monday if I leave the message on a Saturday or Sunday. She can log in to my machine & alter any settings so should I share with her my sleepyhead report & suggest an increase to minimum of 6?

[Zokaluse]

Last message I thought my comments would quote within yours under each paragraph .. sorry they didn’t & I know to reply after the quote from now on (or use html to quote ..I’ll try that to see)