~Sleep Apnoea diagnosis & PMR~

[Megams]

Am aware that prior to heart surgery 20 or so years ago (maternal genetic defect) that I may have experienced a form of sleep apnoea a few times as would awake from deep sleep & sit bolt upright to get breath. Do not recall experiencing anything like this again until this year...........

Since my PMR diagnosis January 2015 I note that I have again awoken in the night out of a deep sleep & again seemed to need breath - just once or twice I think.

Interestingly enough I have complained for some years to my GP & more recently this year to my Rheumy that I have felt breathless the odd time at days end - not sure if there is a connection here or not.

Decided of my own volition to seek some advice from a private sleep clinic & completed an over night sleep study which revealed I stopped breathing 150 times equating to x 18 per hour - classified as moderate sleep apnoea.

I am not over weight, slim build, do not smoke nor drink & fit a 20% profile for this condition.

Was asked who was the snorer out of my parents - my late Father held his breath from time to time when snoring but thought this was normal. My Father was 6ft 2, average build, did not smoke was tea total and can be a genetic condition.

Whilst this has come as a shock to me, am holding great hope that this discovery will assist me in my PMR recovery as was not aware how damaging to the body this condition is over & above the work it places on the adrenal glands, cortisol levels, heart issues, endless headaches just to name a few.

I await a trial of an Icon series Fisher & Pykel premo plus machine tomorrow.

As per my recent post recently diagnosed with have 2 mildly regurgitating heart valves & mildly enlarged atrium.

Recent 24 hour B/P monitoring proved successful without the need for medication of which I am most relieved due to side effects of most meds.

Still healing from temporal artery biopsy early September with one dissolving stitch yet to fall out. This set me back in my overall progress but fight on as we all do.

Can anyone identify with the sleep apnoea & add any comments please?

Sending good wishes to you all once more.

[PMRpro Ambassador]

I think I did suffer when I was on pred. I certainly snored! Probably the extra fat around my throat as it has stopped entirely since I've lost a lot of weight. The snoring also happened while I was still awake in a particular position.

[Megams in reply to PMRpro]

Interestingly enough the Dr I consulted measured my neck which was 34cm. I was within range - 38+ is not so good I'm told.

Great to hear you have lost a lot of weight, this would have made a huge difference.

I have developed a small tum which I call my "steroid baby" - I am working on this as I know it will not be so good for me.

Starting on the CPAP machine tonight - fingers crossed, looking forward to better sleep in time after 30 odd years of being an insomniac.

Great hearing from you again PMRpro.

Take good care as always.

[bowler]

I was recently referred to the sleep apnoea clinic at Papworth Hospital in Cambridge, as I snored, and stopped breathing whilst asleep, and I wake up gasping for air even if I dozed in the chair, The outcome was, I stop breathing 28 times per hour which came within moderate level [ 10 - 30 ] I obviously don't stop breathing too long as my oxygen levels were good at 94% I have been taking steroids for 16 years, and the breathing, or lack of, is more noticeable when on a high dose, at the moment I'm on a slow taper and now on 9. 25mgs and my husband said "I'm a lot better" So perhaps I can blame the steroids ?

[Megams in reply to bowler]

HI Bowler

Yes who knows if this is steroid related but my issue goes back a long time and have lived with it undiagnosed until recently.

I would venture to suggest the my steroid use with PMR may have exacerbated the problem breathing wise.

I begin tonight with the CPAP trail and fingers crossed - I am very excited for this to work well and make a big difference in my health in the long term.

Glad to hear your slow taper working well thus far with approval from your husband - this is excellent.

Take good care.

[bowler in reply to Megams]

I hope all goes well with the CPAP trial, Unfortunately I had 2 goes with the CPAP machine and each time they couldn't get a good reading hence the overnight B/B at Papworth hospital which is an hours drive each way for me, so I had 3 journey's, the joys of living in the country. PS, you may find it easier to put some tape on your finger to hold the device on, mine did slip a bit which didn't help

Good luck

[Megams in reply to bowler]

For my first night I was suitably satisfied even with a few teething issues - what a difference a deeper nights sleep brings after so.................... long, years and years in fact.

Huge difference to my overall self today and of course my hope and confidence for the future.

Can only get better from here and I am on a very slow taper too and that is going well also - abundant joy all round really.

Kind regards once more.

[bowler in reply to Megams]

Thank you for letting us know the outcome with the CPAP, machine, that's great news. I and hope things improve even further,

Sweet dreams.

[bowler in reply to Megams]

Meghams

Sorry I got my machines wrong, I didn't have the CPAP machine. As I was borderline they didn't think I needed it, I just had the home monitor that was attached to my finger.

I'm brain dead today, must be lack of oxygen !!!!

[Megams]

No problem at all and thank you very much for your trouble anyway.

All the best to you in the meantime.