Not well despite using CPAP

[marcusmin]

Hello
I post my story here in case someone is so kind to provide any suggestion or idea.
I have been told I have OSA four years ago for the first time, but having contrasting sleep studies
(AHI 6.1 ; AHI 0; AHI 4.7) some doctors told me not to bother with CPAP.
I generally feel much worse than my AHI suggests.

I decided to start using CPAP two years ago, as situation got worse and worse.

My symptoms are typical:
1) many sudden awakenings (during REM) , at least 10-15 per night; with gasps.
using a movement sensor, I can see >25 movements per night.
2) Incredibly difficult to get up, not refreshed at all
3) Miserable tiredness after 2pm. I am worse 2-3pm than 10pm.

CPAP didn't solve the problem, even if I am told I am a spectacular user (~9hrs usage every night, AHI ~1.0).

The movements/awakenings are really not much related to respiratory events, for example a typical recent night
I woke up 7 (consciously) times, none of each was a respiratory event. The unconscious movements are many more and
still not related to OSA events.
I always wake after/during a dream.
I am always been in good health before all this, weight 68kg (170cm tall) , fit. I am not stressed, actually the problem
started 4 years ago soon after a work life change whereas I am very much less stressed than before.
I have been given several pills, with side effects or tolerance build-up making them dangerous or ineffective.
I am now using Mirtazapine 15mg which is the best so far: I am much better with symptom 1) Awakenings but 2) and 3) are the same.
My life quality is greatly impacted and I am lost with alternatives, any suggestion?
Finally I attach the typical night where I woke up 7 times (with pill). Movements and awakenings are NOT happening during a respiratory event (I usually sleep through respiratory events):
Thanks so much for your help

cpap1.png (130.97 KiB) Viewed 832 times

cpap2.png (129.15 KiB) Viewed 832 times

[rick blaine]

Hi marcusmin,

The first thing that occurs to me is: are you a patient in the UK private health sector, or with BUPA, or one of the other insurance schemes?

The reason I ask is that you've had sleep studies done, and someone has prescribed you a CPAP machine. But it won't, I think, have been the NHS, because they only supply a machine and treat OSA at a 'raw' AHI of 15 or above.

And our knowing that bit about your circumstances may affect what advice we can give you for the best.

The second thing is: you may not have sleep apnea, or not have it as the major condition. You may have some other ailment – such as 'sleep maintenance insomnia' or night terrors for example.

You also mention a lot of movements – you might have some variant of 'restless leg syndrome'.

And if what's interrupting your sleep is a condition other than sleep apnea, then that's what should be being treated.

One more thing. I notice your 'minute vent' – the amount of air you shift in and out in one minute – while asleep is rather high – especially with someone of your slim build. You may have 'hyperventilation syndrome' – a condition which starts (usually) in the daytime, and can then carry over into asleep when there is a pattern of unresolved stress.

HVS can present as cramps, muscle pains, and fatigue (the list of possible symptoms is long). The good news is that it can be treated – and without drugs – by a respiratory therapist. Your GP can refer you.

[marcusmin]

Thanks so much for your reply

I am using NHS service (at UCL Royal ENT Hospital) , they were not a problem in providing the CPAP, my symptoms are much
worse than AHI shows.

I cannot say that CPAP has not helped at all, but that it does not solve my situation unfortunately.

Actually if you know the UK health system, do you think there is a better service - at the moment NHS is in disarray and
appointments are impossible to get: I am in a waiting list for another sleep study with CPAP machine but it will take years.

I would love to get in a place where they make all required studies, collect all results and follow through quickly.
UCL is adequate but painfully slow and fragmented, it takes months from one (telephone) appointment to the other.

Best Regards
Denis

[Janknitz]

Have you been evaluated for Gastroesophageal Reflux (GERD) or Laryngeal/Pahryngeal Reflux (LPR)?
Those conditions often go with sleep apnea and might explain gasping awake, too.

[marcusmin]

Hello
Thanks a lot for your reply.
I was diagnosed with some reflux years ago, I followed a diet but nothing changed.
My symptoms are remarkably steady, i.e. I always wake up several times per night
irrespective of what I eat/drink.
Even pills can knock me down and will fall back to sleep quickly, but I will experience
arousals and disturbed sleep
Many thanks
D

[Julie]

The thing is that you have chosen to self diagnose with apnea, but how well have other things been investigated? Not sleeping well can have so many origins and I wonder if there are other things to look at and not be so focused on apnea.

[rick blaine]

Hello again, marcusmin,

I agree with Julie, that your doctors might consider conditions other than sleep apnea.

In normal times, ie, before the pandemic, your gp could refer you to a general physician or a neurologist at a foundation trust hospital, and he or she could book you in – not for another 'at-home' sleep study, but for a much more detailed multi-channel sleep-study. Sometimes called a poly-somno-gram, or PSG.

This would involve you saying overnight in the hospital's 'sleep lab' and being connected up to not just the sensors used in an 'at-home' sleep study – that is:

– pulse-ox;
– chest-movement concertina tube;
– air-flow through the mouth and nose

but also:

– ECG sensors to monitor heart and circulation;
– EEG sensors on the scalp to record brain activity; and
– movement sensors on the trunk and limbs.

And also an infra-red video recorder.

The hope is that, with all of that information, some diagnoses would suggest themselves.

But with the pressures on the NHS at the moment because of the virus, there might be quite an interval before that can happen.

There is always the option of 'going private' – ie, making use of a non-NHS sleep lab to provide such a multi-channel study. But it is expensive – the cost is something like £1,500.

There two that I know of in London. And they would need you to be referred to them by either your GP or a specialist.

[marcusmin]

Hello Rick
Thanks so much for your reply; yes I would go private and accelerate the diagnosis/treatment.
Can I ask which ones do you know in London?
Ideally I would look to go straight to a neurologist (no physiologist clinician or CBT - I have seen enough..)
and do the full PSG test with my CPAP and then be followed with therapy.

Any suggestion is welcome,

Thanks again


Best Regards
Denis