UARS Insomnia

[migraine-]

you can see the flow limitations at 4:24 clearly caused some kind of arousal as the air flow came back to ~normal briefly.

for monitoring the effectiveness of CPAP, I suggest looking at the flow limitation report closely and expand to look at flow charts like in this chart. Slowly increase pressure to see if that improves over time

also, at such high pressure, the only thing that might cause the flow limitation would be at the tongue base level.

I had to up my pressure to 18.5 this week to prevent onset arousals I have had tonsillitis though, which I'm hoping is to blame since there's little room to go from here.

As I wrote in the afrin thread, I'm struggling with my nose as well. I have been using oxymetazoline spray + steroid since this all started since I need the nasal airflow to allow the CPAP to work, but it doesn't feel like a long-term solution and I've started having crusting/bleeding this week although that could also be due to being unwell + the increase in pressure.

Just want something settled that works, finding it really hard having to keep changing things to be able to fall asleep.

[musculus]

Agree about the Afrin. don't use Oxymetazoline or anything works similar to it... the rebounding congestion can be worse.

I suggest going to an ENT to explore septoplasty/turbinate reduction if nasal congestion is bothering you. if you don't have allergy, the steroid is not of much use either.

However, the flow limitation pattern in the plot has little to do with congestion based on my experience. I saw similar thing as well and it's caused by tongue in my case.

also you are very sensitive to minor airway resistance, means more arousals and worse sleep quality than the average person. Managing the stress could help a little..

[migraine-]

I've seen an ENT privately who felt my nasal passages were open and not in need of expanding. He also felt my oropharynx was very wide open and unlikely to be obstructing. He said I have a narrow nasopharynx and mildly enlarged tonsils which encroach on that narrowed area to some degree and feels that area is where all my problems come from. That tallies with my symptoms - when I snore myself awake, that's where I feel it.

The only way I've been able to get to sleep this week is with pressure of 18.5min, full face mask and decongestant spray. And mirtazapine. The aerophagia is biblical. And I'm not staying asleep well at all.

The NHS keep getting me to try and do another home sleep study and I keep explaining I cannot fall asleep without CPAP. Frankly I don't think they've ever seen anyone with my symptoms and have no idea what to do with me.

I've put feelers out today to a sleep specialist in Cambridge who the ENT mentioned to see if I can get a private appointment.

Honestly, if someone is willing to trache me and it'd solve the problem I'd do it this afternoon.

[kteague]

Couple more thoughts as you sort through things. What is your sleeping position? It may have been discussed earlier, if so, I apologize. While you are figuring things out, if you feel the back of the tongue area is problematic, do sleep in positions that allow gravity to work for you instead of against you. Some stomach sleepers here have talked about the Falcon position, which is a form of stomach sleeping that accomodates the mask. If you must side sleep, position yourself with the edge of your face hanging over the pillow. This should slightly collapse the edge of the pillow and allow your face to tilt slightly toward the mattress. This position causes the relaxed tongue to fall toward the front of the mouth. Side sleeping without the tilt still allows the back of the tongue to relax partly into the airway. Back sleeping is the worse for tongue problems. I know that feeling of desperation, as do many others here. Do consider trying the above suggestion. It may help just enough to make things a bit more tolerable.

You aren't using the ramp feature, correct?

Did you have any more concerns about your leg movements? If you do go in for a sleep study, make sure in advance the doctor knows your legs are a possible concern so they can order them to be wired. That isn't always standard procedure. If you get there and the order wasn't written to include the legs you'll likely be out of luck and will have a missed opportunity to possibly get answers about them.

[migraine-]

I'm not using ramp no (I need the pressure whilst I'm falling asleep to prevent the onset/transitional apneas).

I mostly fall asleep on my side, falcon if I can get comfortable without leaks with the mask on.

Fiance hasn't mentioned my legs again, I'll check with her.

[migraine-]

Is one of the fancy machines like an ASV likely to be better for me? It's so hard to find experiences from people with the same main specific problem as me i.e. the sleep onset apneas/respiratory arousals.

Everything takes so fricking long through the NHS and idk if they'd even give me one anyway, but I don't think I can afford to drop 2 grand or whatever on an ASV to try.

[migraine-]

Reiterated today to Phillips Respironics that I CANNOT fall asleep without PAP so am unable to complete their sleep test. They've said they'll tell the consultant again and see where they want to go from here.

I managed to do one sleep test back when this all started with a watchpat, so hopefully they'll relent and accept the results of that and move forward from there.

Managing to drop my pressures again now the tonsillitis has passed (fell asleep on 13.5 last night on nasal pillows) and I think that's getting me sleeping a bit better. Will try drop it a bit more tonight and see. AHI remains low, although I can't look properly on OSCAR as we're halfway through moving and I don't have my computer.

Still taking 7.5 of mirtazapine which I hope to get off asap given how much people seem to struggle with it, but not going to upset the apple cart right now.

Not had a response from the other sleep guy about a private appointment yet.

I'm hoping the sleep clinic will just decide to bring me in for a sleep study in hospital, see what's happening and we go from there. At the moment it seems like nobody has I've spoken to has really seen my symptoms before, don't know what to do with me and there's probably even a little bit of them that doesn't believe it.

There's nothing I wouldn't do to go back to how things were four months ago when I could just fall asleep without PAP. It's the fact I can't fall asleep without it that really gets me; if I needed it to get better sleep or feel better I'd be fine with it, but it's stressful knowing I NEED it to fall asleep.

I'd still take a trach if it meant I could just fall asleep on my own and move on with my life.

[migraine-]

So I'm falling asleep fine now - with no medication - but I'm waking up at 3-4 each night and then tossing and turning the rest of the night. Starting to feel really exhausted.

Looking at my flow chart, I still have many events which look like this:



Which don't get flagged as anything.

I currently have my minimum pressure at 16.5 with flex of 3. Do I need to up the minimum pressure even more? It concerns me I'm needing such high pressures at only 28 since this is only likely to get worse as I age. Also aerophagia is quite at issue at these pressures.

Any help appreciated.

[Okie bipap]

It looks like you are taking a larger breath in, then holding your breath for a few seconds. It is not long enough time to be flagged as an apnea.

[migraine-]

Aahhhhh. I went back onto mirtazapine as I was constantly waking up at 4am. Everything had settled down really well for about 6 weeks, taking that and on 16.5 pressure.

Then I got a cold and was having sleep onset arousals again. Upped the pressure to 18 and went away.

Settled again for a couple of weeks and now the onset arousals have started again. I'm a bit out of ideas at this point. Hardly any room to raise the pressure more (tried 19 with no improvement), going down doesn't seem to help. I'm still getting off eventually so far, but I'm concerned things are going to go downhill.

Here's the night before last (pushed it to 19 after a few arousals, had a couple more then went to sleep).



Any ideas? Let me know if there's any more screenshots which are useful.

I'm still trying to get on with the NHS sleep clinic but it's difficult with covid shutting down a lot of outpatient stuff.

[migraine-]

Bump.

Penny for anyone's thoughts. Happy to post more graphs.

[DreamDiver]

Bump.

Penny for anyone's thoughts. Happy to post more graphs.

With an AHI of less than 0.5, it's really hard to say anything other than keep up the good work! It's probably a good idea to stay at this pressure regime for a while if it's working for you.

Chris

[migraine-]

The problem is I'm still getting these arousals at sleep/wake transition, where I suddenly take a deep breath and wake myself up. Or I'm getting them again, after they'd gone away for a while, is more accurate.

[DreamDiver]

The problem is I'm still getting these arousals at sleep/wake transition, where I suddenly take a deep breath and wake myself up. Or I'm getting them again, after they'd gone away for a while, is more accurate.

This is my life too. I wish there were simple answers. I take 5-HTP, a trytophan supplement that's much more mild than melatonin for sleep. My only suggestion is to practice good sleep hygiene. Find what works for you and tweak those habits until you're sleeping better.

Unfortunately, practice takes time. But the longer we stay using the machine, the more opportunity we have to master it.

Chris

[NewToSleepApnea]

This is exactly what started happening to me just over two weeks ago. I can’t believe I’m finally reading this. Transitional sleep apnea. Actually sleeping is fine. But getting to sleep is impossible. I can feel myself stop breathing and my O2 level dropping.

This is miserable. Can’t find a doctor who takes this seriously. I’m going to DM you Migraine. But looking all over the internet I’ve haven’t found an answer. This is so scary.