Obstructive Sleep Aonoea or not? - Lung Conditions C...

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Obstructive Sleep Aonoea or not?

JaneChapple profile image
10 Replies

Hello

I have seen other posts on here that suggests people with mild obstructive sleep apnoea can be provided with CPAP. I have just been turned down by Yeovil hospital as they say I only have mild sleep apnoea and they will not provide CPAP on NHS because it is only mild. I have a SleepOn ring which says I may have mild to moderate sleep apnoea. I have also been told it is insomnia and not OSA. I understand one of the symptoms of OSA is insomnia, so I dont understand why I am being told insomnia is a separate issue?. I also have RLS and they are blaming it on insomnia and RLS when I truly believe I have OSA. I wake up several times a night with a full bladder which is another symptom. The consultant even wrote back and said my overnight results do show OSA, ut obviously not enough to supply me with a CPAP.

I would add that I am slim and do not have a big neck size, but I understand thin people can get OSA as children get it and it is the neck physiology that is important. I do have narrow features and TMJ as well as Hadhimotos. I understand both these conditions can be caaused by OSA. I do snore, but not badly. I think the NICE Guidelines are 30 years out of date, but this is what the NHS seem to follow. I am wondering if it depends on which area you live in as to whether you get support or not.

Any thoghts would be most welcome.

Jane😣😎

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JaneChapple
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10 Replies

So on the one hand its good your score wasn't high enough to warrant a CPAP machine.

There are other aids and devices that may help, you could check with your consultant about these the mandibular device springs to mind.

links below may give you some ideas that may help.

blf.org.uk/support-for-you/...

nhs.uk/conditions/sleep-apn...

You could check back again with your GP regarding the waking several times during the night with a full bladder as this could be a symptom of some other heath issue.

This page may be of interest and help regarding insomnia.

nhs.uk/oneyou/every-mind-ma...

Best wishes

Meme50 profile image
Meme50 in reply to

Thank you so much for the useful information. I am about to get on this treadmill 😂

Meme50 profile image
Meme50

Wishing you well Jane. I am about to have tests too but also I do not sleep well either.

airbusA346 profile image
airbusA346

You could try a different hospital. Some do treat mild OSA with CPAP. I believe the GWH in Swindon does for example.

My sister has sleep apnoea and has had a cpap machine for two years. Her husband insisted that she was tested because of very heavy snoring and he was concerned that she stopped breathing in her sleep. She was not waking up. When tested overnight she stopped breathing 75 times in one night. It does seem that the sleep apnoea department have assessed you as being not as bad as that and not in need of the machine. Which is good news. The machine has helped my sister a lot but it is not pleasant to use.

I do agree with others that maybe a talk with your GP about your sleeping difficulties and maybe investigation into your need to empty your bladder during the night. I do hope that you can get it sorted out.

vwtopaz profile image
vwtopaz

My daughter has had sleep apnoea for years mild from 5 yrs..... bi pap commenced at age 16 due to 150 episodes per night also retains carbon dioxide, at 22 this has enhanced her quality of life, she has Down Syndrome/Cerebral Palsy with complex medical needs.

I recently commenced bi pap in January this year as I too retain carbon dioxide however I do not have sleep apnoea, my issues are related to diaphragm weakness, I too had bladder issues, scan showed I was not emptying my bladder, I now ensure once I think I have, I sit for a minute or two then try to wee again...... yeah I pass more.(advice from Urology) Oh and contact Sleep organisations, I found sleep Scotland extremely helpful.

Good luck to you, seek a second opinion if you’re not convinced you have been given correct diagnosis.

JaneChapple profile image
JaneChapple

I hsve had secomd opnion but still not convinced. Moderate sleep apnoea according to my sleepon eing laxt night AHI 155 times!

Sorry to hear abut yu and daughter. Out of interest does she have thyrpid isxues? My son and I have Hashimptos Thyroiditis and he is special needs. Took seven years and second opinion to get him diagnosed. It seems we have to fight for everything these days!

I believe the over night sleep watch the NHS use is not the 4ight one and they should use the WatchPAT but that is expensive. Also their info is 30 years out of date. They say I have insomnia but that is one of the side effects of OSA as is a full bladder at night.

Thanks for your response and take care.

JaneCxx😣😎

vwtopaz profile image
vwtopaz

Hi, yes my daughter has hypothyroidism, she has neuromuscular, heart/lung, scoliosis suffered a stroke in infancy, (open heart surgery )silent aspiration/peg fed and quadriplegic.....an absolute joy, melts my heart with her smile, thanks to advances in modern medicine she has survived all odds, over the years she had lengthy hospital in-depth sleep studies. I also do tosca studies but they have become less frequent at home as she’s managed by the neuromuscular long term ventilation team, who manage my therapy too.

Have you considered a private consultation? I can totally empathise with you, wishing you and your son impending good health. x

JaneChapple profile image
JaneChapple in reply tovwtopaz

Thank you our problems are insignificant compared to yours and your daughter, although I lost my daughter at the BRI st 18 mths and was involved in the heart scandal that took place there in the 1990s sadly.

I was just wondering do they do full thyroid checks on you and your daughter or just check TSH (thyroid stimulating hormone)? Tests needed are preferably TSH, FT4, FT3, TPO, Tgab antibodies, Ferritin (iron), full iron panel, Vitamin D, B12, folate. These are rarely done due to cost and many patients not on right dose of levo or n3ver told about other treatments such as T3 (lkothyronine) or NDT (Natural desiccated thyroid). Unfortunately T3 is expensive and most areas refuse to let patients have it even if they have clinical need. NDT was stopped in 2019 and very few get this prescribed on NHS. The NDT was used successfully for msny years until Big Pharma came in with the so-called gold standard treatment of levothyroxine, and for which no trials were ever done.

Also most patients feel better with their TSH near 1 or even below, but docs are not very well trained in thyroid matters and many patients end up self treating which is not easy or fair.

I wish you and your daughter the best of luck with your health issues.

Best wishes

JaneCx😥😎

vwtopaz profile image
vwtopaz

Endocrinologist complete full blood work annually, I have rheumatoid arthritis, mild bronchiectasis breathlessness due to neuromuscular weakness, hope you get the answers you so desperately seek, you have endured so much. I’m so very sorry for your loss, take care x

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