sleep apnea

[Stannington-lad]

Hi

Can any tell me if sleep apnea is part of Hughes Syndrome?

At the moment I am being tested for this as I have been wearing a monitor last night whilst sleeping and going back to the hospital on Monday for the results.

Thank you

Regards

Terry

[MaryF Administrator]

Hi there some clear info here for you, glad they are at least looking into it for you, as if you do have this, perhaps you can gain some more night time comfort with the right treatment: I know others on here with us do suffer from this.

nhs.uk/Conditions/Sleep-apn...

All the best to you. Mary F x

[Willa]

I have been told by a specialist who does research in APS that they are finding many patients who have APS have sleep apnea, including me. He showed me a list of names of people and the page was full. They will be doing more research on this - so much to learn about this condition. I wear a CPAP every night and won't go a night without it, as I was told by a neurologist once that most strokes happen in the early morning while you are sleeping. I have know idea if this is true, but I don't intend someone who finds out. Good luck.

[bluebutterfly101]

Hi, I was diagnosed with APS and postitive anti-nuclear antibodies in 2001, although consultants I have seen say because of my medical history I have probably had it since my 20s (I am now 65). Because I had polio as a child I was referred to a clinic at St Ts to deal with post polio syndrome. They did all the sleep tests in 2002 and diagnosed me with sleep apnea and I was put on a CPAP. However, due to being highly claustrophobic I couldn't cope with it - even the nasal cushions, so after a few years I came off the CPAP altogether.

Well, what a surprise when my consultant last month asked for another overnight study to be done (not the oximitry but the full overnight study) after a new oximitry had been done. I went back for the results two weeks ago only to find there is NO trace of the sleep apnea! Dr showed me the results from the 1st and this new one and they are totally different.

I couldn't believe it - one of my conditions I no longer have to worry about - what a great day that was! Now looking forward to my appt at St Ts Lupus unit at the end of this month to sort out other of my conditions and get some correct meds at last. Life is looking much better even though the way I am suffering has not changed - amazing what getting some good info does for you

Good luck, Monica

[Westcross1 in reply to bluebutterfly101]

Hi

I read your pst with great interest.

Could you tell me what is the likely cause of the improvements in your sleep apnea?

Thanks.

[Hidden]

It's not part of Hughes syndrome - just another condition for you to worry about, lucky you! Hope the appointment goes ok today

[Stannington-lad]

Hi

Thank you for your comments.

Sadly it turns out that I aggressive sleep apnea and I have to have a CPAP machine. I was shocked and upset.

[MaryF Administrator in reply to Stannington-lad]

Hi there, I hope somebody helps you get the hang of it,, you are not the only one on here, lots of good wishes to you. Mary F x

[Stannington-lad]

Hi MaryF

Thank you. I have read that others have same problem, I was amazed that things like this is common.

You don"t realise what it is until you get it and do the research.

My son will help me with it as he is a medical electrical engineer for an hospital.

Thank you all once again