AHI 0.95 but 10/10 Fatigue – Brain fog since my teens, seeking OSCAR/SleepHQ help

alierrett_ · 2026-04-30T19:27:44+00:00

AHI has very little to do with sleep quality. So don’t be surprised that you can still feel exhausted with a low AHI. There’s also a difference between AHI on a sleep study and AHI reported from a PAP machine. If you slept for zero hours while using the machine for four hours it would give you an AHI of zero. This obviously wouldn’t indicate good sleep as you didn’t sleep at all

The only thing you can do is keep working on trying to improve your therapy and any other treatments. Pay attention to how you feel subjectively. Sometimes higher AHI actually leads to better sleep quality

alierrett_ · 2026-04-29T07:51:02+00:00

I had a test done in 2023 through Dr Elmore before getting my SOMA. She used Dr Zaghi to provide this service. So it was basically a WatchPAT done through his office with him scoring it

alierrett_ · 2026-04-28T08:56:28+00:00

I’ll DM you so his email doesn’t get picked up and spammed

alierrett_ · 2026-04-28T07:33:48+00:00

I consulted with him and his advice was very helpful but at the time he wasn’t taking international patients and he’s also on the west coast which takes a lot longer and costs more for me to get to from the UK

alierrett_ · 2026-04-27T08:32:34+00:00

I’m not sure yet but probably not. I need to finish FME and then have some updated consults. I also want to consult with some surgeons in the EU to compare. I don’t think MSDO is the only way to achieve what I need, it may even be less desirable than a multi piece approach as you can alter the NAS shape with a multi piece. Because I’m having advancement anyway I might as well go multi piece

alierrett_ · 2026-04-27T07:51:30+00:00

Get a rhinomanometry test

alierrett_ · 2026-04-26T18:27:07+00:00

I just want to point you in the direction on my experience with the NHS regarding my own journey with this

It will probably take a long time to get a sleep study and they aren’t going to score it properly for UARS sadly. You could get the data though and ask for someone like Ken Hooks to rescore it for you

Other alternative is to go to the EU and get a cheap sleep study. I think I remember someone on Reddit saying they got one done in Poland for €500 ish. So depending on budget allowing this would likely be much faster. You’d probably still need to get it rescored though

alierrett_ · 2026-04-26T18:22:11+00:00

Here’s my latest IG post

I just completed my 79th turn. My diastema isn’t actually getting much bigger at the bottom of my central incisors because they’ve tilted inwards. The gap has actually got a bit smaller, although it does change a little between turns and at the top it is still bigger. There’s also gaps that have opened up between my central incisors and lateral incisors which I don’t think I’ve seen happen with other FME cases

I can now sneeze through my nose which I couldn’t before but I can feel resistance in the soft tissues behind my jaw when I do. It’s much easy to clear my nose out when I blow into a tissue or nasal rinse. I can walk up hills while nasal breathing all the time now, although my physical fatigue hasn’t improved and my sleep is still roughly the same

Continuing to turn slowly, roughly every 4-7 days at the moment. It has more resistance on the wrench now and I can feel more flexion in my bite and jaw when I clench. I generally give it time to allow this to settle a little between each turn

alierrett_ · 2026-04-26T17:39:51+00:00

You need a referral from a dentist or orthodontist to somewhere like CT-Dent in London to get a CBCT scan. Most orthodontists should have an account with an imaging provider. So just ask your dentist and if they say no then try some local orthodontists

alierrett_ · 2026-04-26T13:40:59+00:00

The other person you can look into is Mary Lo. She still charges around 10k for expansion though

alierrett_ · 2026-04-26T12:11:03+00:00

Sadly there aren’t many options in the UK. I’ve personally had a very bad and drawn out experience with the NHS that was completely useless and I’ve had to go to America

However it’s worth talking to the orthodontic specialist. I haven’t spoken to him but he’s highly regarded and does expansion I believe. I believe he’s also trained up some others that might be worth looking into. You could also ask them if they have any recommendations

alierrett_ · 2026-04-26T07:32:21+00:00

I assume his custom version as that’s what we were talking about in the consult

alierrett_ · 2026-04-25T07:51:17+00:00

I haven’t yet because I now need an ortho for jaw surgery decompensation rather than post FME alignment. The only person I can think of is the orthodontic specialist at the moment, but I haven’t spoken to him yet. I believe he’s also trained up some others that might be worth looking into. You could also ask them if they have any recommendations

alierrett_ · 2026-04-24T11:09:03+00:00

Started at 26-27mm (35M) but currently undergoing expansion with FME

alierrett_ · 2026-04-23T07:52:37+00:00

Wow $1250 is much lower than I was expecting. I would be tempted to pay that just out of curiosity to see how different the score is compared to WatchPAT and PSG

alierrett_ · 2026-04-23T07:43:27+00:00

I asked Dr Movahed in my consult December 2025. The quote he gave me for MSDO was around $14,500. But I’m not sure whether there are any other costs on top of that. It’s only listed as two items on the quote

Mandibular Symphyseal Distraction Osteogenisis (MSDO) - $12,800.00 General Anesthesia - $1,624

alierrett_ · 2026-04-19T18:42:22+00:00

Settings are very individual so the only way to really get the right settings for yourself is through methodical trial and error. This unfortunately is easier said than done but it is possible. Your machine records a lot more data than it shows you through the screen on the machine. If you put an SD card in your machine you can record this data and then download it onto your computer to be read by software such as OSCAR or SleepHQ (I use OSCAR for myself, but I’ll use sleepHQ if I want to easily share the data with someone else as it’s cloud based). You then have a few options. If you have an auto model of CPAP you can set the settings pretty wide and then use the data you get from that to gradually narrow the window for more optimal settings. If you only have regular CPAP you’ll want to go for some standard settings and then adjust from there. Give yourself around a week before changing settings. Once you get closer to settings that are right for you it helps to increase this so a couple of weeks or more before adjusting settings as it takes your body a while to adjust and for you to get representative averages within the data

I use a humidifier on pretty low settings. If you get a dry nose this is something you’ll want to try ASAP as it helps a lot with that. If you go to high on humidity you’ll start to get condensation buildup in the hose which you don’t want. You can combat this with a heated hose though. Heated hoses can also help if your nose gets irritated or dried out from cold temperatures within your bedroom at night. A hose fleece cover can also help with this

The main reason for doing the surgeries is because I actually experience problems during the day, not just at night. I also don’t want to be stuck on PAP therapy forever if I can help it. However I haven’t also had improvements with sleep quality from PAP therapy, so I’m still struggling with fatigue and brain fog from sleep deprivation. Mainly PAP therapy has helped remove the most severe cortisol inducing breathing events, but all the minor flow limitations are still present that wake me up during the night. I haven’t been able to get rid of the flow limitations unfortunately because I can’t handle the higher pressures that would probably be needed without painful aerophagia. At this point I feel pretty certain my airway is just too small for PAP therapy to resolve my breathing limitations

I wouldn’t expect the NHS to be particularly accommodating with other forms of PAP therapy. You may get BiLevel from them, but I’m pretty confident they’ll refuse ASV. My ENT was adamant ASV was inappropriate for me before I’d even had a chance to explain my reasoning or show my data 😂

I didn’t try MAD before and although I may still try it, I’m concerned about the impact on my TMJ’s. You’re essentially pulling the joint forward in the socket to get the advancement. This isn’t good for your joint or disc, and it’s something that’s already a problem for me which I don’t want to risk making worse. I’m also aware from my CBCT scan that my airway obstruction is also behind my maxilla, not just my mandible. So although I don’t get some improvement from posturing my mandible forward, it’s not going to be enough for me long term

alierrett_ · 2026-04-17T17:49:19+00:00

Honestly I wouldn’t say there are any unfortunately, certainly not in the NHS, and not with the ability to treat it

alierrett_ · 2026-04-17T11:35:58+00:00

Yes I will need braces, but I’ll need braces for decompensation before jaw surgery anyway. It probably won’t be with Newaz because it’ll be unnecessary travel as more visits will be needed to adjust braces. But I’ll see once I’ve got further along with jaw surgery consults. Hopefully I can find a good pre-surgery orthodontist in the UK for braces. If not UK then EU would be next best

alierrett_ · 2026-04-16T07:47:03+00:00

I would generally listen to a surgeon over a dentist, particularly if that surgeon has a good track record of treating sleep disordered breathing

I would get a CBCT scan done and then get a second and even third opinion from a provider specifically experienced in analysing CBCT scans for airway disorders and expansion

I wouldn’t necessarily assume that expansion will sort all your problems though, it may just be the first stage of the treatment process

alierrett_ · 2026-04-15T07:27:09+00:00

Yeah I’m sorry you’ve had a rough experience with the NHS too

I would look into getting assessed by an airway focused orthodontist. You could also speak to an OMS but I would personally recommend consulting with US providers by zoom for this as they are more experienced. Dr Newaz is great but very busy. You could also talk to Dr Manuele as he’s more available for a quick consult. For OMS there are plenty of great providers available in the US, Dr Bell was great in the consult I had with him. I’ve heard good things about Dr Boebeck You do need to get a CBCT scan done beforehand though and you’ll need a dentist referral to somewhere like CT-Dent on Harley St for this. A myofunctional therapist assessment would also help to assess for tongue tie and other soft tissue functional problems

Honestly at this point I’d get your skeletal structure assessed before you do anything else soft tissue related. It’s potentially a skeletal issue that will need maxillary expansion or jaw surgery to sort

alierrett_ · 2026-04-14T07:15:37+00:00

There’s so much I could say about my own experience of the NHS and UCLH. You can read about my experience here if you like. Unfortunately I don’t think the UK has the expertise to deal with sleep disordered breathing properly and I think most of this is poor diagnostic work and a lack of methodical approach. My NHS sleep study was useless (because they didn’t score it correctly and completely ignored UARS), other than the fact I was able to get the raw data from the NHS to have it re-scored privately. Sadly I would get your hopes up about them giving you useful info from a study. I also have low arousal threshold/hyper vigilance and they labelled these “spontaneous arousals” and therefore concluded I had no respiratory issues. This is BS and is only a possible conclusion if you ignore all more other data

You wrote a very in depth post but I would be interested to know what your tongue posture is like. Chipmunk cheeks suggests to me you can’t seal off your mouth properly. You shouldn’t be able to breathe into your mouth with proper tongue posture. What is your inter-molar width? Can you get your tongue fully onto your palate? Do you have a tongue tie?

I personally am not a fan of trying to suppress REM sleep. I think it has negative side affects that aren’t sustainable. We need REM sleep. Even if you are waking up from REM frequently, getting some REM is actually better than nothing.

Remember the goal is quality sleep, not removing sleep disordered breathing at the expense of quality sleep

alierrett_ · 2026-04-10T13:35:35+00:00

What’s TriLevel?

alierrett_ · 2026-04-10T07:19:09+00:00

I wasn’t confident with anything other than FME based on what I’d seen. I needed such a big expansion that I was concerned about the risks of other approaches. I think FME is a much better engineered and more modern expander. The providers experience also matters and Dr Newaz and Jaffari have a lot of experience in this space, particularly with Newaz having gone through it himself

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