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Newly diagnosed via Phillips at home test and needing advice

Hi all,

I have recently been diagnosed with OSA via home test i paid for privately with Phillips and looking at some advice to get treated in the UK via NHS, private, or by sorting myself. 

I have never felt rested in the morning and people have always commented i’d toss and turn and hold breathe in night (even during the day too). I have nasal issues which are to investigated which are likely to be nasal polyps and deviated septum which are known to exasperate any issues with OSA. 

About 3 years ago my health took a turn for the worse and i was walking up with exceptionally dry mouth and mucus in the morn which would make me gag and throw up vomit. At the dame time despite eating very little and training i out on a lot of weight which i think is mainly swelling, prior to this i was muscular and fit. 

After trying many different nasal drops and rinses i’m still blocked and snoring from nose at night before gasping for air from my mouth due to nasal airway being blocked.  

Anyway, i know this forum isn't for medical advice so i’m just looking at ways to get treated. I have been referred to my GP to see an ENT and respiratory consultant but i called the booking service as i havent heard anything in months and was told that it would be a year or 18 months from NOW that i’d be seen so almost 2 years from referrals. Not good!  I have a new job and the PHC kicks off tomorrow and was hoping to use that as its fully underwritten and disregards past issues etc but reading the small print ‘sleep disorders’ are excluded!! i find that strange tbh especially when diagnosis and treatment is relatively cheap compared to other issues. I should still be able to see an ENT via private as dev septum/polyps cause issues not related to OSA and are not caused by it. 

I’m in the greater glasgow nhs area, is there any respiratory and Ent consultants people can recommend? Also, has anyone bought a CPAP and successfully treated themselves? 

Despite all this i’m actually glad i have something to tackle now rather than being told i was depressed etc

all the best,

D

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Hi and welcome Damien

What were the results of your sleep study....mild, moderate or severe sleep apnoea?  You're right that most private insurance doesn't cover sleep apnoea, although will sometimes pay for an initial consultation.  Probably because there are 8 million of us in the UK with just obstructive sleep apnoea, although if they used common sense, treating people will cut down on the many linked medical conditions untreated sleep apnoea causes or exacerbates.

That's a long time to wait if you mean respiratory at a sleep clinic.  It may be worth calling them to say you've got a private diagnosis.  Some clinics will accept them but some won't.  If you chose the private route to get your own CPAP you could still join the waiting list for a referral to the sleep clinic but at least you'd be treated until that came up.  You would need an auto CPAP like the Philips DreamStation (APAP) and you can see costs at the charity as this one would treat you an auto pressures with you not having access to a sleep clinic at the moment https://www.hope2sleep.co.uk/dreamstation-cpap-pro-or-auto-apap-mac....  Due to the fact you've got a diagnosis, if you bought from us we'd just need that diagnosis with CPAP being a prescription item.

An ENT consultation is a good idea as well, but depending on the severity of your sleep apnoea, surgery doesn't usually cure sleep apnoea.  I've had 2 different nose surgeries, and whilst it didn't cure me it means I can breathe easier in the mask.  I wouldn't know of an ENT in Glasgow, but hopefully your GP knows of a suitable one.

Hope this helps.

Hi Kath,

Many thanks for your reply.

My diagnosis was mild at 14.6 AHI but that included a sp02 nadir of 82% and some events lasting up to 90 seconds so i certainly don't feel its mild!

I managed to get through to the clinic today who said it would be minimum 14 week wait for the consultation which i suppose is better than a year but still quite a wait. 

As its likely i’m not able to see a sleep clinic via PHC i will look into getting a cpap myself if recommended from the ENT ill see shortly via the PHC. I still need nasal issues sorted regardless as the affect me during the day too.

it appears the dreamstation with Apap with humidifier is out if stock, would you know when it’ll be back in? 
14 weeks min on NHS is too long to wait. 

Cheers 

D

Agree Damien, that although 14.6 is classed as mild (on the border of moderate though) I'd want that AHI and spo2 treating asap and especially if symptomatic.

I'm not sure why you'd wait for recommendation from ENT though re CPAP when you have the results of the CPAP, unless you're hoping surgery with very good odds of a cure might be suggested.  There are some ENT clinics that do supply CPAP though on the NHS if they work in sleep.

Our new stock is arriving at the charity tomorrow afternoon, so we should be back in stock then and you're welcome to ring us or email support@hope2sleep.co.uk if you need any further advice or support.

Damien said:

Hi Kath,

Many thanks for your reply.

My diagnosis was mild at 14.6 AHI but that included a sp02 nadir of 82% and some events lasting up to 90 seconds so i certainly don't feel its mild!

I managed to get through to the clinic today who said it would be minimum 14 week wait for the consultation which i suppose is better than a year but still quite a wait. 

As its likely i’m not able to see a sleep clinic via PHC i will look into getting a cpap myself if recommended from the ENT ill see shortly via the PHC. I still need nasal issues sorted regardless as the affect me during the day too.

it appears the dreamstation with Apap with humidifier is out if stock, would you know when it’ll be back in? 
14 weeks min on NHS is too long to wait. 

Cheers 

D

Hi Kath,

I’m just holding off to see final sight of my insurance docs and to speak to them (on the very unlikely chance they can do anything) but it does look like it will be excluded so will likely buy the apap this week and then see ENT privately to sort nasal issues. I’d rather pay the £ now than wait the14+ weeks on NHS sleep clinic. 

looking forward to seeing what sleep is like haha 

Bless you and do understand, now you've got a diagnosis with 'hope' in sight for an end, or at least vast improvements, to your symptoms.  We got some more machines ordered today, although only one APAP without a humifidier...the rest are the ones including humidifiers.  We should be getting more stock though soon.  Good luck!

Damien said:

Hi Kath,

I’m just holding off to see final sight of my insurance docs and to speak to them (on the very unlikely chance they can do anything) but it does look like it will be excluded so will likely buy the apap this week and then see ENT privately to sort nasal issues. I’d rather pay the £ now than wait the14+ weeks on NHS sleep clinic. 

looking forward to seeing what sleep is like haha 

Hi Kathy,

i bit the bullet the other day and just ordered the apap.

What is the usual waiting time for order and delivery completion in mainland UK? 

thanks 

damien 

I am new to this forum, and sleep disease. I am rather like Damien. Got a referral to Lung/Sleep consultant but no appointments in nhs for at least 10 months. Ordered the charity’s two night monitoring kit to test for sleep apnoea, but will this count as diagnosis to get prescription if I want to go buying a CPAP route from the charity? I am getting impatient of feeling so ill, and feeling I am deteriorating. I have fibromyalgia, hypothyroidism, insulin dependent diabetes ( following shock/sepsis) and now have resistant hypertension. I bought a oximeter a few weeks ago, and measure oxygen levels when waking in the night, regularly getting readings 65-80%; meanwhile my pulse is rising to 135 just doing daily tasks like getting dressed. I try to walk10,000 steps a day, but recently this has gone down to 5-6,000. 

Sorry I missed this question Damien but I've spoken to you since at the charity and know you should have the machine by now.  Hope things are going well.

Damien said:

Hi Kathy,

i bit the bullet the other day and just ordered the apap.

What is the usual waiting time for order and delivery completion in mainland UK? 

thanks 

damien 

Hi Judith

Sorry to hear there's such a long waiting list in your area.  It's been made worse because a lot of staff from the sleep clinics are respiratory specialists and these are the very professionals who were needed in ICU and on the COVID wards to treat those patients during this pandemic, and especially due to their CPAP and ventilation experience.

The test you've ordered from us is a diagnostic sleep study and the results are  manually scored and reported on by a qualified sleep consultant.  If diagnosed he will advise CPAP therapy and based upon this we will be able to sell you a CPAP machine.  We'd still advise you continue with the sleep clinic referral, but at least whilst waiting you will be treated (if diagnosed) and will be supported all the way by us.  Obviously, we need the results of the sleep study to confirm sleep apnoea, but I have to say that fibromyalgia, hypothyroidism, diabetes and resistant hypertension are all ref flags.

We've almost caught up with our huge backlog so hopefully within 2 weeks you'll be at the top of our waiting list and you'll be contacted to complete the forms we require and arrange delivery of the equipment.  I know it's hard waiting whilst suffering, but if diagnosed, which sounds very likely, you can soon look forward to better health, as in most cases of all the medical conditions you're struggling with, once treated with CPAP you should get improvements to them all.  There's a good article to read about resistance hypertension on this link, but you'll also find studies backing up the article and we have 100's of testimonials from patients with improvement to their high BP and even reversal in a lot of cases

https://www.cardiosmart.org/news/2015/5/sleep-apnea-and-high-blood-...

Looking forward to helping you soon.

Kath


Judith Wilson said:

I am new to this forum, and sleep disease. I am rather like Damien. Got a referral to Lung/Sleep consultant but no appointments in nhs for at least 10 months. Ordered the charity’s two night monitoring kit to test for sleep apnoea, but will this count as diagnosis to get prescription if I want to go buying a CPAP route from the charity? I am getting impatient of feeling so ill, and feeling I am deteriorating. I have fibromyalgia, hypothyroidism, insulin dependent diabetes ( following shock/sepsis) and now have resistant hypertension. I bought a oximeter a few weeks ago, and measure oxygen levels when waking in the night, regularly getting readings 65-80%; meanwhile my pulse is rising to 135 just doing daily tasks like getting dressed. I try to walk10,000 steps a day, but recently this has gone down to 5-6,000. 

Thank you Kath, yes I suspected Lung/Sleep folks had been commandeered’ to covid, but this seems to include appointment staff too! Although I’d love a remedy ( no matter how partial) to my existing conditions I am a bit fearful of the CPAP...can’t take even wearing a face mask for swimming /snorkelling as get claustrophobic and have difficulty breathing properly. Hope if I need to go down this route your fitting service, with real humans, will be back and running. 

Kath Hope said:

Hi Judith

Sorry to hear there's such a long waiting list in your area.  It's been made worse because a lot of staff from the sleep clinics are respiratory specialists and these are the very professionals who were needed in ICU and on the COVID wards to treat those patients during this pandemic, and especially due to their CPAP and ventilation experience.

The test you've ordered from us is a diagnostic sleep study and the results are  manually scored and reported on by a qualified sleep consultant.  If diagnosed he will advise CPAP therapy and based upon this we will be able to sell you a CPAP machine.  We'd still advise you continue with the sleep clinic referral, but at least whilst waiting you will be treated (if diagnosed) and will be supported all the way by us.  Obviously, we need the results of the sleep study to confirm sleep apnoea, but I have to say that fibromyalgia, hypothyroidism, diabetes and resistant hypertension are all ref flags.

We've almost caught up with our huge backlog so hopefully within 2 weeks you'll be at the top of our waiting list and you'll be contacted to complete the forms we require and arrange delivery of the equipment.  I know it's hard waiting whilst suffering, but if diagnosed, which sounds very likely, you can soon look forward to better health, as in most cases of all the medical conditions you're struggling with, once treated with CPAP you should get improvements to them all.  There's a good article to read about resistance hypertension on this link, but you'll also find studies backing up the article and we have 100's of testimonials from patients with improvement to their high BP and even reversal in a lot of cases

https://www.cardiosmart.org/news/2015/5/sleep-apnea-and-high-blood-...

Looking forward to helping you soon.

Kath


Judith Wilson said:

I am new to this forum, and sleep disease. I am rather like Damien. Got a referral to Lung/Sleep consultant but no appointments in nhs for at least 10 months. Ordered the charity’s two night monitoring kit to test for sleep apnoea, but will this count as diagnosis to get prescription if I want to go buying a CPAP route from the charity? I am getting impatient of feeling so ill, and feeling I am deteriorating. I have fibromyalgia, hypothyroidism, insulin dependent diabetes ( following shock/sepsis) and now have resistant hypertension. I bought a oximeter a few weeks ago, and measure oxygen levels when waking in the night, regularly getting readings 65-80%; meanwhile my pulse is rising to 135 just doing daily tasks like getting dressed. I try to walk10,000 steps a day, but recently this has gone down to 5-6,000. 

Hi Judith,

sorry to hear you are struggling. I’ve been using my apap since Tuesday and noticed some small improvements but i think i’ll need to up the pressure to get AHI lower as although its much lower than my test result i’m still having numerous  apnoeas/hypopnoeas.

i know you have mentioned claustrophobia but seriously the mask is no issue at all and I’ve been surprised that at bow normal it feels already. I have had a few issues with it coming of surinf the night but i’m hoping thats due to restlessness caused by AHI and will stop wheni get it lower. 

Kath wasa great help to me and the service is very efficient when purchasing a machine,

good luck

Judith Wilson said:

Thank you Kath, yes I suspected Lung/Sleep folks had been commandeered’ to covid, but this seems to include appointment staff too! Although I’d love a remedy ( no matter how partial) to my existing conditions I am a bit fearful of the CPAP...can’t take even wearing a face mask for swimming /snorkelling as get claustrophobic and have difficulty breathing properly. Hope if I need to go down this route your fitting service, with real humans, will be back and running. 

Kath Hope said:

Hi Judith

Sorry to hear there's such a long waiting list in your area.  It's been made worse because a lot of staff from the sleep clinics are respiratory specialists and these are the very professionals who were needed in ICU and on the COVID wards to treat those patients during this pandemic, and especially due to their CPAP and ventilation experience.

The test you've ordered from us is a diagnostic sleep study and the results are  manually scored and reported on by a qualified sleep consultant.  If diagnosed he will advise CPAP therapy and based upon this we will be able to sell you a CPAP machine.  We'd still advise you continue with the sleep clinic referral, but at least whilst waiting you will be treated (if diagnosed) and will be supported all the way by us.  Obviously, we need the results of the sleep study to confirm sleep apnoea, but I have to say that fibromyalgia, hypothyroidism, diabetes and resistant hypertension are all ref flags.

We've almost caught up with our huge backlog so hopefully within 2 weeks you'll be at the top of our waiting list and you'll be contacted to complete the forms we require and arrange delivery of the equipment.  I know it's hard waiting whilst suffering, but if diagnosed, which sounds very likely, you can soon look forward to better health, as in most cases of all the medical conditions you're struggling with, once treated with CPAP you should get improvements to them all.  There's a good article to read about resistance hypertension on this link, but you'll also find studies backing up the article and we have 100's of testimonials from patients with improvement to their high BP and even reversal in a lot of cases

https://www.cardiosmart.org/news/2015/5/sleep-apnea-and-high-blood-...

Looking forward to helping you soon.

Kath


Judith Wilson said:

I am new to this forum, and sleep disease. I am rather like Damien. Got a referral to Lung/Sleep consultant but no appointments in nhs for at least 10 months. Ordered the charity’s two night monitoring kit to test for sleep apnoea, but will this count as diagnosis to get prescription if I want to go buying a CPAP route from the charity? I am getting impatient of feeling so ill, and feeling I am deteriorating. I have fibromyalgia, hypothyroidism, insulin dependent diabetes ( following shock/sepsis) and now have resistant hypertension. I bought a oximeter a few weeks ago, and measure oxygen levels when waking in the night, regularly getting readings 65-80%; meanwhile my pulse is rising to 135 just doing daily tasks like getting dressed. I try to walk10,000 steps a day, but recently this has gone down to 5-6,000. 

Glad to hear you are settling into APAP machine Damien...it did sound preferable to CPAP ones.The more I use my oximeter as I wake up during sleep I think I’m discovering my problem with low oxygen seems to be only in the morning as I snooze, so perhaps not sleep apnoea as such ie waking 10s of times per hour, but just stopping breathing for a longer time then. It’s all very odd, but I could sure do with a ‘cure’! Good luck.

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