Experiences of sleep apnea

[Bemyclementine]

Im pretty sure I have obstructive sleep apnea.

I snore, badly. This has increased a lot recently. I have regained some weight lost last year. Pretty sure the snoring reduced significantly when I lost weight so obviously thats a priority. I wake up with a dry mouth snd a fat tongue. I don't have a partner so no ideaif Im gasping/stopping breathing, I haven't noticed that I am. Im tired.

Im just looking for others experiences of anything else thats helped. I see pillows suggested, mouthguard type devices that pull your lower jaw forward a bit.

Anything that anyone has found that helps.

Try and record yourself sleeping and listen back to it

DH has this. He now uses a CPAP machine, it's been a life saver for both of us!

First step would be go to the Dr's they will look at your symptoms and may do the Epworth scale. Refer you to have proper tests if they are concerned.

I have done this with the snorelab app. Its really awful. I have no idea how I sleep through it.

I have neen to the GP recently , I am tired during the day. I dont wake up feeling refreshed. I don't nod off at my desk. If i were to lay on the sofa reading then I might nod off but nothing extreme. The GP did speak about OSA, measured my neck and said it was ok. I was pretty horrified by tge idea tbh, I don't want to have it but on reflection i think i might have. I just want ideas on what has helped others.

As i said, I have a real motivation to lose some weight again as the snoring was noticably better.

I have it. Mine is positional and only when I'm on my back. It's a bit of a nightmare tbh. I also sleep badly, am occasionally startled awake, panting, and my blood pressure spikes in the morning, I believe due to poor sleep.

But I wish I never had never said anything to the GP because now it's on my medical records. I currently don't need to notify the DVLA because I never fall asleep anywhere except when I'm in bed, and I'm complying with 'treatment'. However, I have been trying with CPAP for 9 months and still only manage 1-2 hours sleep at most while wearing it (although I wear it for the full 4 hours I'm supposed to). Apparently I can't have the mandibular devices because of 2 dead teeth that are untreated because they currently don't cause me a problem and dentist doesn't want to risk messing with them. I have a couple of butterfly pillows and these have helped. But I have been told by NHS to keep trying with CPAP, despite most of the time I'm wearing it I'm lying awake, and I only go to sleep once I've taken it off for the night. And they know this. So I get less sleep with my CPAP 'treatment' than without it, and am more tired, but I have to continue to do what the NHS tells me so I am compliant. They have also refused to change my mask for a less obtrusive one, to see if that helps, so I'm going to buy an alternative myself (they are ~£100+). The really annoying thing is that my apnea is only bad enough to need treatment if I'm lying on my back. I prefer to sleep on my front, but the monitoring device to diagnose apnea is strapped to your chest, which prevented me from sleeping in my normal position for the test. Same with the mask - I can't sleep in my preferred position with this mask, but at least it lets me side sleep, which is also fine.

If you are wanting treatments without talking to your GP, try a butterfly pillow. I bought 2 to try which are different softnesses, and I use both. But look for ones that work with the position you sleep in. The mouth devices, I was told to get one that is mouldable, and if you find you can tolerate it, that the best ones are from your dentist (but are super expensive). The NHS consultant said I should be looking at £40-£80, but this was before we realised that I couldn't have one due to my teeth.

Sorry that was long!!

I have a cpap machine but I rarely use it. I have tried two different masks, one keeps my husband awake the other keeps me awake. I have an appointment with my respiratory doctor later this month so will have to discuss if there us another option. Get in touch with your gp and they can refer you for a sleep study.

I have it, I was diagnosed privately as I wasn't falling asleep in the day, so I couldn't get an NHS referral. After private testing, I was referred back to the NHS by the consultant I saw. Apparently it's quite severe. I use a CPAP and feel enormously better for it. It took me a few weeks to get used to it. I did also try losing weight, but was diagnosed when at my lowest weight for many years.

I’ve recently been diagnosed with severely apnoea and now on the waiting list for a CPAP machine. Having read a lot about it since no wonder I feel so dreadful all the time. I’ve been putting it down to poor Mental Health and the menopause and it could be that, but it may not necessarily be that. I have no energy or motivation to do anything at all I sort of just bumble through life day-to-day. Having read a lot of people’s experiences once they’ve had a CPAP machine it’s sounds life changing. I’m hopeful that I will get my life back again soon. It’s such a debilitating condition.

This is interesting as I never fall asleep in the day (unless I've gone to bed for a nap to try and catch up 30 mins or so), yet my GP referred me to the NHS respiratory clinic straight away. I wish he hadn't!! I'm simply more tired with my CPAP "treatment" than without it.

DH snored for years and refused to see the GP. He ws tired in the day, would have a dry mouth, would wake through the night gasping and would nap watching TV or as a passenger in the car. Finally, I completed the epworth score and submitted an E consult to his GP.
https://www.asthmaandlung.org.uk/conditions/obstructive-sleep-apnoea-osa/epworth-sleepiness-scale?cmp_id=23843820854&adg_id=194250464297&kwd=epworth%20sleepiness%20scale&device=c&gad_source=1&gad_campaignid=23843820854&gbraid=0AAAAAD74XLqCLKw4fBVKnmv3Pn2aXhaXx&gclid=CjwKCAjw56zWBhB0EiwAdPOQOTKyjXUJnzMlowATn0bXI98PBm_vZYXynz2b9oY4HKkuTrb314gWaRoCMcEQAvD_BwE

GP referred him to a respiratory Dr. They posted out a chest strap and pulse oximeter for his finger which he wore overnight. He now has a humidified CPAP which doesn't dry his mouth. Its absolutely silent! He has more energy and has lost weight. He wants to get off the machine in time too.

I would see a different GP at your practice OP because you need a referral to a specialist to have proper testing done, not a neck measurement!

Get yourself a referral to a sleep clinic or go private if you can afford it. They can at least rule apnea in or out.

I ended up diagnosed with “parasomnia” which means they basically have no idea what was causing my symptoms (waking up gasping for air about 30mins after falling asleep, snoring) but it wasn’t sleep apnea as my oxygen levels etc when monitored were fine and I wasn’t excessively sleepy during the day.

No idea what causes my snoring but basically now resorted to separate beds when required for my light sleeping DH to get some sleep.

Ive just do e the Epworth scale and coneout at 4 which isin the lowest range.

I have a sibling with OSA who uses a cpap machine and it definitely hadnt changed her life unfortunately. I really dont want to go down that route uf I can help it, I cant even cope if theres quilt/pilliw close to my face when trying to sleep.

I will look into rhe butterfly pillow to start with.

The two butterfly pillows I have, one is firm and one is much more squidgy. The firm one is definitely best for the apnea, but the squidgy one is more comfortable. Sometimes I just want one or the other. I also have a ring that you can wear at night to monitor any apnea events (if spo2 drops below 88%). Sadly I have discovered that the spo2 tracking on my Garmin is utterly wrong. The ring works well but it was over £100 so not cheap. I just mention that in case anyone reading wants to be able to track things themselves.

@theturtleswims would you mind linking the firmer one please, if you can?

Also do you know what the issue is with teeth and mouthguards? I have 2 molar gaps.

Id be interested to know the spo but as you say the ring is expensive, how do you know its accurate?

@Bemyclementine The ring claims to be medical grade, and they also make other medical grade SPO2 monitors that were exactly like the one I used in my NHS assessment. At my last NHS appointment I said I had one and they knew about the exact one I had and seemed happy I was using it.
It's a Wellue SPO2 ring. I can't remember off hand where I got it, but it's this one
https://www.ebay.co.uk/itm/204389291502

The pillow took several nights to work out. It is contoured differently on each long edge and you can use it either way. It took me a bit of trial and error to realise I preferred to swivel it around and have it the opposite way to that shown in most of the pictures! I prefer the more vertical long edge under my neck, rather than the edge with the taper in the middle, otherwise my head sat in the wrong place.
https://www.amazon.co.uk/dp/B0DQBQFSP9?ref=ppx_yo2ov_dt_b_fed_asin_title&th=1

The teeth and mouthguard thing is because the mouthguards put a bit of pressure on your teeth to hold your jaw in the correct place. This means there is a slight pressure on them. If your teeth are healthy, this is fine, but if you have certain problems, it means they aren't suitable. The best mouthguards are custom made by dentists and I was told (by the NHS chap at my last appointment) that they cost about £1k. And the dentists first need to make sure that your teeth are up to the job.

@theturtleswims thank you! I have ordered the pillow. Is the ring just for monitoring? Im actually quite concerned, as the snore app is giving me really high readings.

I got a sleep study done, the NHS is useless, so I got it done abroad and found out I was waking up around once a minute in the night - basically very severe sleep apnea. I use a CPAP machine and a retainer to bring my jaw forwards in the night.

I couldn't have got this all done privately in the UK, but by doing it abroad it was much more reasonable. For me, it was certainly worth it, but I understand everyone's situation is different.

Mounjaro fixed mine! I’ve lost 3.5 stone and don’t snore now. My DH has sleep apnoea and sleep clinic recorded him one night and now he has a CPAP machine which has really helped his tiredness

The ring is for monitoring and it also alerts you (by vibration) if your spo2 drops below 88% (thats the default). You can turn the vibration strength right down but not off. It is supposed to just alert you so you move in your sleep and maybe change positions without fully waking you but I'm not convinced about that! It does wake me if it keeps vibrating. Then I turn back onto my side and try to get back to sleep. It generally works. But because it can wake you, you might not want to wear it every night. If I don't wear my CPAP at all I tend not to wear the ring either because I only do that if I think I really need a good nights sleep, and if I get into the wrong position (on my back) the ring will disturb me. I can tell when I wake up though that I've had apnea events.

I do find the data fascinating. I'm going to post an example so you can see what you get. On this night, you can tell I was wearing the CPAP machine the first part of the night (the top band with mostly green oxygen levels - green is good. Then I took off the CPAP and the band goes a bit amber and more wiggly (more extreme spo2 drops), with the little triangles representing the below 88% alerts.
Pulse rate was fairly steady.
Movement shows orange when I'm moving (awake) and nothing when I'm asleep. So I can tell that I slept early on, then woke up for a few hours when I was wearing the CPAP machine, eventually took it off, then went immediately back to sleep and my spo2 became erratic.
The second picture shows the other data you get.
I really like being able to understand what is actually happening. It shows that I do need treatment for my apnea, but the majority of the time I'm using the CPAP machine I'm awake, so it isn't working for me. I need adjustments (different mask maybe?) or an alternative treatment. I'm hoping that having data like this will help at my apnea clinic reviews.
I hope this is helpful. This ring probably isn't for everyone but it suits my personality - I feel have to understand everything and get annoyed if I don't!
I also hope that you are able to get your own concerns sorted out. Do ask if you want any more info.