Sleep Apnoea (the results are in)

[IdasMum]

Here I was, last Thursday evening. This was amazingly uncomfortable and not surprisingly I didn't sleep well. I also had a monitor on my left wrist which kept bumping on a bruise underneath and O2 recorder on the left ring finger to measure my O2 sats which deteriorated during the apnoeas.

Have received letter and results from consultant today and I have severe Sleep Apnoea. I am shocked it is severe and am pleased to now know. I have emailed him to ask him to go ahead and arrange for a home visit from the technician who also deals with OH's machine. We'll soon be matching

My snoring is quite an issue apparently. Had I waited for OH to complain I'd be dead, he manages to sleep through so much.

I am hopeful that once I am working okay with the machine, I will no longer be up so many times to the loo.

This is an interesting read.

kudosnore.com/updates/Sleep...

[DorsetLady PMRGCAuk volunteer]

Hi,

Oh great...another side effect to worry about!

Glad you’ve got it sorted though.

[SheffieldJane]

Oh dear, Ida's mum, Thank you for this useful post. I think I may have sleep apnoea too. Although my OH says I don't snore, I am waking up in the night in a panic because I am not breathing. I am aware of a narrowed throat when I try to swallow tablets too ( never a problem before) much more prone to choke. My nose feels blocked when I lie down and sometimes I sneeze, cough and choke at the same time which makes my cruel son 😂. He'll be sorry. The GP list grows. I had no idea that this was a Pred side effect and that we are stuck with it even when we are off Pred. Beyond dismayed. I'll never sleep in that contraption! Let us know how you get on.

[IdasMum in reply to SheffieldJane]

That waking in a panic is horrible....and I know I've often woken like that over the years...maybe I've had this longer than I realise.

For several months I've felt like I have catarrh when I lay down at night and this blocks my throat...takes 30 mins of so to disappear. I looked it up and the symptoms closely resemble Post Nasal Drip ....however the increased volume of tonsils and fat tongue may be the problem.

I too choke more easily and taking tablets has never been easy but is much harder now. I hadn't made that connection, thank you.

I am lucky to hve experience of OH using a CPAP machine since 2008...and feel less concerned now to use one. I am so keen to feel more well, rather than get more mired down with other illnesses.

It's also really important to get checked as it SA makes us more susceptible to heart attack or stroke AND (have only just read this) "The condition raises your risk for other health issues like high blood pressure and diabetes." So, treating this may address two other issues for me.

I will let you know and will ask you to let me know when you've got checked out!

[Jo_Lyn]

I suspect I may have it too ...

[IdasMum in reply to Jo_Lyn]

Please see my answer above....do get checked.

[Lizwillis]

Very helpful, IdasMum, thank you. I too have noticed my tongue fills the whole of my mouth, and like Sheffieldjane, cough, choke and splutter when lying down but also during the day. Have a persistent cough with scratchy, raspythroat which is wearing me down. Also started noticing pain in jaw when eating, under chin and pain across shoulders up back of neck into back of head. Have had a chest Xray and am to see my GP later today. Think I will try and press to see a rheumy, as I also keep having to go back up to 20 mgs pred. Thank you to both you and Sheffieldjane for bringing these things to our attention. I just keep putting all the different " problems" down to pred or PMR, which no doubt they are. Good luck to both of you.

[PMRpro Ambassador in reply to Lizwillis]

Very suggestive of GCA that . Although it could also be due to silent reflux.

[SheffieldJane in reply to Lizwillis]

Are they looking for GCA?

They should be, push or go to A& E and bypass the GP completely.

[Lizwillis]

Thank you both. Well, I guess like most of us who "just" have PMR, there is always the worry at the back of your mind that GCA might be lurking around. My sister suggested maybe silent refulx. Will look it up. It is just that my throat is always "scratchy" and raspy, not sore though, and the cough doesn't seem related to eating. Maybe with reflux it isn't. My OH often has acid reflux, has for years and what I seem to have is nothing like what he has.

I am just ( like so many of us) so exhausted, not helped by huge lack of sleep and feeling that the inflammation is not being adequately controlled by 20 mgs and worried that I have had to up my dose 3 or 4 times recently. Felt almost "human" way back at the beginning of September when I had got down to 15 mgs.

Don't think my GP wanted to refer me before to a rheumy, don't know why. Will see what he says this p.m.!

[PMRpro Ambassador in reply to Lizwillis]

Silent reflux tends to happen overnight and leave your throat and even chest raw - so the cough goes on.

But either way - you need to see an expert rather than a GP who apparently doesn't recognise when they are out of their depth.

[Lizwillis]

Hello PMRpro. You are so kind to bother getting back to me, thank you! Well, have literally just got back from seeing my GP. OK, he thinks it might be silent reflux, so have been prescribed Omeprazole, surprise surprise! So am to give it a "go". He did in passing mention ENT. But I also told him of being upset that I am back up to20 mgs of Pred, AGAIN! So, I am to have blood tests next week, see him in a couple of weeks, see if Omeprazole has had any effect, then I think he might refer me to a rheumy! Mention was made of being put on Methotrexate ( is that right?).

Oh, what I have forgotten to say is he mentioned putting me on 60 mgs of Pred! Though he thinks I don't have GCA. I was quite shocked so he has told me to take 40mgs!

I guess I have to just stick with this craziness for the next couple of weeks and see where it takes me. The pharmacist told me it sorted her silent reflux cough out in a couple of days, we shall see! Anyway, thank you again.

[PMRpro Ambassador in reply to Lizwillis]

If the GP thinks 60mg is appropriate (which is perfectly reasonable in GCA if you have any visual symptoms) he should be contacting a rheumy as a EMERGENCY. As for methotrexate - that should not be on the table until you have a diagnosis that rules out GCA.

[Lizwillis]

I honestly don't know that he does think I have GCA, in fact he has always in the past doubted that I have PMR, but to me, my symptoms have fitted it very well. ( he did think, maybe I did have it after CRP etc came back slightly raised and that was after being on pred for a while). The symptoms I mentioned didn't seem to fit his knowledge of how and where they should be. Aches and pains can be attributed to stress! I didn't respond to that!

I do have some fuzzy sight, have had one cataract done last January, not brilliant sight since then, apparently because of astigmatism, and of course now have a cataract in the other one. Went to see my optician who seems to think my presriotion is fine. Bright lights are a particular bother.

[PMRpro Ambassador in reply to Lizwillis]

If he doesn't think you have GCA then all the more reason for contact with a rheumy asap if he's offering 60mg pred.

[Lizwillis]

Will see how I go with taking the Omeprazole, if that stops the cough. Have bloods taken next Wednesday, so am inclined to hold off upping the pred till after that as it might impact any inflammation results. Not that they have ever been very much raised. Then will go back to see dr and see if he will refer me. Am very confused.