Have to wait 3 months for a sleep study - what to do?

[Pugsy]

I have some sleep maintenance insomnia issues myself but they are caused by something totally unrelated to sleep apnea so the cpap machine didn't do such a great job fixing my sleep maintenance insomnia issues.

The cpap did help immediately with the nocturia that was keeping me up all night it seemed like and the morning killer headaches that I had every day ...the overall energy level improvement was a much more gradual improvement and was tied a lot to the sleep maintenance insomnia issues and as I got a better handle on fixing that issue and got more solid blocks of sleep the energy level started creeping up.

I know first hand how it is to hope that cpap fixes ALL our problems and unfortunately also know first hand that it can't fix problems unrelated to sleep apnea no matter how much we want to blame sleep apnea for all our problems.

While insomnia is a common symptom of sleep apnea...sleep apnea is only one of MANY causes for insomnia and the best cpap therapy in the world isn't going to fix the insomnia if the insomnia isn't caused by sleep apnea.

I don't mean to be a wet blanket and rain on everyone's parade but I also don't want people to have unrealistic expectations as to what cpap can fix and be disappointed when cpap doesn't make them feel like they did 30 years ago. I am still waiting on that one myself.
I now tell people that while I don't wake up wanting to go run a marathon...at least I don't wake up feeling like I just ran a marathon and got run over by a bus at the end of it.

I think a lot of people who put the cpap machine's in the closet because "they didn't help" are people who had unrealistic expectations and very likely had problems not caused by sleep apnea and thus the machine couldn't help.

Be hopeful but be realistic too.

[rick blaine]

Hello again, tobysmith,

Thanks for the info. Your situation is a wee bit more fraught than I thought.

Overall, the treatment of sleep apnea from NHS sleep service departments in and around London is good. Sorry to hear your GP didn't respond to your earlier presentations. It seems that getting that first referral and diagnostic sleep study is the hard part*. Once you or anyone gets past that first stage and gets a diagnosis, then progress is usually quite straightforward.

* If it's any consolation, my GP didn't respond to my first presentation either, and I also took matters into my own hands.

On the upside, there are lots of GPs now who will whizz a 'possible' in for a hospital sleep study, or as I said, use their own practice's kit. And speaking of whizz, you can be fast-tracked if your job depends on you getting treatment.

Now, to help with your sitch:

1. The sleep study you did was at a good price. There are places in the UK that charge at least twice as much.

2. Did the hope2sleep people provide any documents/ diagrams/ charts? In addition to saying your AHI was 15, was there a break-down of sub-classes of events?

For example, OA or OSA = some number, HP or HYP = another number, and CA or CE = a third number?

That kind of detail would be useful for people here, even if it doesn't yet mean much to you.

3. I concur with the remarks on O2 sats. There are both British and American clinicians who say anything below 94% is of concern, and there are others who say they don't worry till it drops below 90%.

As I choose to think about, the key factor isn't how low the O2 percentage goes, it's 'what do both your mid-brain and hind-brain do about it going that low?' Do you get alerted? Do you struggle to wake up? If you do, then you're not getting proper rest.

It's not always about 'not getting enough oxygen'. It is about not getting enough rest. (Again, if it helps, I was a zombie, even though I was only < 90 for a total of 5m 30s over a whole night, and I didn't ever go < 85.)

4. It's now clear to me that that appointment several months off is for - as far as the hospital sleep service department is concerned - a first and diagnostic sleep study.

You, in the meantime, are ready for stage two - the titration, as they say. Doing it at home, and by yourself.

Since nobody else has said it, perhaps I can do the honours.

a. Set the machine up at the same height off the floor as your head will be while sleeping, and consult the manual (somebody here will link you to an on-line copy).

b. The machine should come out of the box with its pressure range 'wide open'. That is, with its minimum pressure at the lowest possible, 4 cm. And its maximum at its highest possible pressure, 20 cm.

If it's not at those numbers, follow the instructions to get into the 'clinician's section', and set it at those numbers.

c. Use the machine at those numbers for at least a week. I know some might disagree, but I think it's a good idea to get a clear baseline.

d. Download a copy of Sleepyhead - it's shareware - and use it to read your SD card. Then upload some images, and ask for suggestions. (Anything Pugsy tells you is gold.)

5. I don't have any personal experience with the masks you mention. But I notice that many people on this forum have spoken well of them since they've been introduced (they're two of the newer and lighter kind).

6. The thing with VAT - as you know, the Revenue and the Customs got combined a few years ago. And you may find that, even though APAP equipment is rated at zero for both import duty and VAT, that Customs charge you VAT anyway. You then have to claim it back.

It's a bind. Best advice I can give is this: if the package arrives with no charge, fine. If Customs contact you and ask for payment before release, then - for speed - pay them. But note the address, etc, of the office making the charge, and call or write them for an exemption reclaim form.

Alternatively, if the sender has used a courier such as FedEx or similar - and if the courier has 'advanced the tax to the Customs' - ie, paid the VAT for you - then you must pay the courier delivery guy. And then set about reclaiming from Customs as above.

And keep all the paperwork to take with you on your travels.

[tobysmith]

OK so I have my first results from Sleepyhead. They are a little worrying, since my AHI is 1.65 and yet I don't feel I slept that much different last night
Which makes me think if I really have sleep apnea !

My obstructive index was 0.0, Clear airway 0.93 and hypopnea 0.62 :/

Although I do feel a little more energised and bit mentally better today. And the night before I had a very late night with alcohol, so last night was a recovery sleep.

Not sure what this shows. The pressure was going to up 6/7/8 a good few times - is this relevant? My 95% pressure was at 6.24. Is this reacting or is that just testing out? [on the pressure chart, should it show the red and green line? mine only shows green]

Here they are. Pugsy, what other info do I need to show?

One thing - I am using the F10 mask - I was very aware of the air leaking out onto my forehead and nose - the curved part of the connector obviously allows air out at all times which I could sense, and sleeping on my side was quite bad with feeling the air pushing over my forehead. I had the humidifier set at 84 and yet the air still felt cold for me. What is a good temp?

[Pugsy]

my AHI is 1.65 and yet I don't feel I slept that much different last night
Which makes me think if I really have sleep apnea !

The AHI shown is the apnea events that the machine didn't prevent...we have no way to know how many it did prevent.

You expected the overnight miracle? We all do but those that experience it are rare. I know I expected it and got a rude awakening that I wasn't going to get it. I had some immediate improvements (like didn't have to get up and pee 5 or 6 times a night) but overall energy level improvement and stuff like that took months.

Did you have many awakenings last night? If you did those alone can make us feel not so great the next day. It wouldn't be unusual to wake often during the night when first starting cpap therapy. After all sleeping with an alien planted on your face isn't exactly natural. It takes time for us to simply adjust to the newness of all this even if the therapy itself is optimal right off the bat. I used to wake up often just to feel the mask on my face for some weird reason...or wake up to check if the machine was on because I couldn't feel it. Took me several weeks to get past those sort of wake ups.

I had the humidifier set at 84 and yet the air still felt cold for me. What is a good temp?

The 84 is the hose air temp and not humidity...86 is as high as it will go.
What is the ambient air temp in your bedroom?
Did you use the preheat feature? Do you know about the preheat feature?

The pressure was going to up 6/7/8 a good few times - is this relevant? My 95% pressure was at 6.24. Is this reacting or is that just testing out?

ResMed machines don't test things out...when you see the increases it is responding to something it didn't like. We most likely won't see for sure what it is responding to unless you see a large cluster of something and the pressure goes way up and stays.

95% of any number (leak or pressure) just means that for 95% of the night you were at OR BELOW that number. It is NOT where you were at for 95% of the night. People often don't understand or forget the "or below" part of the definition.

Your leaks were minimal in terms of large leaks...one brief large leak flag and not enough to hurt anything as long as it didn't wake you up.
Any leak (even tiny) that wakes someone up needs to be worked on because it is disturbing sleep quality...anything that disturbs our sleep is unwanted.
I sleep through large leaks fairly often...they are brief and rarely prolonged so I choose to ignore them. They aren't bad enough or long enough to make any difference the the therapy and to try to fix them would create more potential for my sleep to be disturbed...the cure would be worse than the disease.

Not sure what you mean about the red/green pressure line. Some people have 2 pressure lines showing because of the mode they are using or the exhale relief they are using.
Maybe that is what you mean...have you seen some reports where there's a red line?
I probably have and it's so normal that I don't remember it.
There's no color coding for "good" vs "not good" in the pressure line if that is what you are wondering.

For a newbie doing all this on your own...heckuva good job and report. You just need practice and experience under your belt.

The mask thing is the hardest part IMHO...sorry I can't help with FFM stuff...I hate those little suckers. so I don't have much experience with any of them except the Amara View. I won't even try to put anything that presses on my nasal bridge area.

The mask needs to "disappear" so that you don't notice it so much. That's a tall order I know and takes some work and experimenting.

[tobysmith]

my AHI is 1.65 and yet I don't feel I slept that much different last night
Which makes me think if I really have sleep apnea !

The AHI shown is the apnea events that the machine didn't prevent...we have no way to know how many it did prevent.

You expected the overnight miracle? We all do but those that experience it are rare. I know I expected it and got a rude awakening that I wasn't going to get it. I had some immediate improvements (like didn't have to get up and pee 5 or 6 times a night) but overall energy level improvement and stuff like that took months.

Did you have many awakenings last night? If you did those alone can make us feel not so great the next day. It wouldn't be unusual to wake often during the night when first starting cpap therapy. After all sleeping with an alien planted on your face isn't exactly natural. It takes time for us to simply adjust to the newness of all this even if the therapy itself is optimal right off the bat. I used to wake up often just to feel the mask on my face for some weird reason...or wake up to check if the machine was on because I couldn't feel it. Took me several weeks to get past those sort of wake ups.

Ha, yes I should have said - I had quite a lot of awakenings, so I was thinking that maybe it's not Apnea but other things.

I woke up plenty of times, was very aware of air blowing out of the "release" on the F10 curved front part. Pretty sure they were partly responsible for some of the wakeups.

Shame there is not a home EEG test to track what stage of sleep we are in? (or is there one?)

Will keep trying. And hoping my NHS sleep study will happen within a few months.

May try the nasal pillows tonight, on a test they leak far less

[chunkyfrog]

I was surprised how well some fitness trackers estimate sleep stages.
I used a Zeo for several months, and found that I get similar results from my Misfit Flash.
The results are not definitive, but may give you a ballpark notion of what is happening.
Best part--some trackers are quite inexpensive. I paid under $20 for my newest Flash.
(Clearance)

[palerider]

Shame there is not a home EEG test to track what stage of sleep we are in? (or is there one?)

there's nothing on the consumer market today, though there are a few 'home brew' units that people are using, however, you can pick up a used zeo sleep monitor on ebay, (for a lot less than they go for new) and while their cloud service is dead (one of the reasons I don't like buying gadgets that require internet connectivity to work) there are hobbyists that have written supporting programs for the zeo to enable you to read the data from it, and even import it into sleepyhead.

[Pugsy]

If you remember a lot of wake ups then that means your sleep architecture got trashed. Each time we wake up it messes with the normal cycles that sleep needs to go through for the restorative powers of sleep to work their magic.
With multiple wake ups you may not have been able to progress into the deeper stages.

I don't know of any product that will be able to accurately measure sleep stages that we can use at home.
Some of the gadgets out there can do sort of a decent job but they are using accelerometers to estimate sleep...on the premise that if you don't sleep well you move around a lot but that's not necessarily the case. I can lay in one position for quite a while and not move but be fully awake.
The only real measuring tool sleep stages that is reliable would be a real EEG to measure brainwaves.

Do you normally have poor sleep quality with a lot of wake ups...pre cpap?

[tobysmith]

Shame there is not a home EEG test to track what stage of sleep we are in? (or is there one?)

there's nothing on the consumer market today, though there are a few 'home brew' units that people are using, however, you can pick up a used zeo sleep monitor on ebay, (for a lot less than they go for new) and while their cloud service is dead (one of the reasons I don't like buying gadgets that require internet connectivity to work) there are hobbyists that have written supporting programs for the zeo to enable you to read the data from it, and even import it into sleepyhead.

Excellent, thanks!

[tobysmith]

Do you normally have poor sleep quality with a lot of wake ups...pre cpap?

Yes - I literally never sleep through the night. Nightmares, large awakenings, many small awakenings that feel like apnea since I get these feelings/memories/dreams of choking and gasping. I can "sleep" for 10 hours and not feel rested.

[tobysmith]

I was surprised how well some fitness trackers estimate sleep stages.
I used a Zeo for several months, and found that I get similar results from my Misfit Flash.
The results are not definitive, but may give you a ballpark notion of what is happening.
Best part--some trackers are quite inexpensive. I paid under $20 for my newest Flash.
(Clearance)

Flash does it simply by wrist movements?

[Pugsy]

Products like FitBit work on wrist movements. Acceleromers like that that simply measure movement of some sort. It told me I walked 7,753 steps when I mowed the yard on the riding lawn mower. They are easily fooled.
They aren't measuring sleep...they are measuring movement and assuming no movement is sleeping.

The Zeo was probably the closest thing to the real deal but even it wasn't 100% accurate and they told you it wasn't.
I tried one...it told me I was in deep sleep often...and I was awake.

Well...at least we know your crappy sleep predates the cpap machine and the machine isn't necessarily to blame for last night.
Here's the thing...cpap fixes bad sleep related to sleep apnea. It can't fix bad sleep caused by something else no matter how much we want to put all the blame for the crappy sleep on sleep apnea.
We don't know how much of your crappy sleep is related to the sleep apnea...we do know you do have sleep apnea..
Start with fixing the known problem and then worry about fixing the other stuff if other stuff is left over after the cpap is optimally treated and you are well adjusted to the machine and mask.
There are tons of causes for poor quality sleep besides sleep apnea...cpaps can't fix bad sleep that isn't caused by the one thing it is designed to fix...sleep apnea.

[tobysmith]

The P10 was a failure - I used it until 5am and then switched to the full face mask which was much better (although the mask I can still feel the air leaking out the side and the front valve).

The P10 feels very weird when I assume the pressure kicks in, it wakes me up - feels like the air forces into my nose and out my mouth (although i'm asleep at the time so don't know).

Had bad sleep hygeine last night (late to bed, reading the interent in bed) which didn't help overall tired feeling today.

But the awakenings from the P10 were bad

Here is the report (note the time zone change to bed was actually 12.37, wake 8.53

[palerider]

please post your screenshots as shown here: https://sleep.tnet.com/resources/sleepyhead/shorganize