Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Welcome to our Forum - Feel Free to Introduce Yourself Here.

Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers. 

Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation.  Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.

 

Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

 

Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum.  Don’t be shy in posting and sharing, as we’re all in this together and to help each other.

Best Wishes for good sleep!

Kath

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Good evening to you all,

I am a new member here, and I am very pleased to have found this forum.

I have been using a CPAP machine for over four years now, and I have accepted the situation and have managed to get used to it.

At the start I was very resentful of the young man who caused the car accident which caused me to need to use the CPAP machine again, after I had been lucky enough to have successful nasal surgery to eliminate the blockages in my nasal passages and allow me to breath clearly again.

I hope that I can contribute something to the forum and help others to improve the quality of their sleep, and thus improve their lives.

Best wishes from Cornwall.

HM

Only just seen your post Hugh, so a belated welcome to our forum, and sorry to hear it was a car accident needing you to go back onto CPAP.  On the plus side it's good you feel you can contribute to others as we're all in this together.



Hugh Mattos said:

Good evening to you all,

I am a new member here, and I am very pleased to have found this forum.

I have been using a CPAP machine for over four years now, and I have accepted the situation and have managed to get used to it.

At the start I was very resentful of the young man who caused the car accident which caused me to need to use the CPAP machine again, after I had been lucky enough to have successful nasal surgery to eliminate the blockages in my nasal passages and allow me to breath clearly again.

I hope that I can contribute something to the forum and help others to improve the quality of their sleep, and thus improve their lives.

Best wishes from Cornwall.

HM

Well i finally  made  it  here..thanks  for  all  the  help   and advice fromKath  who has  been a great  help.I used  my philips  cpap machine  last  night for  the  first time  with full facial  mask.Slept  without  having  to get up  once after sleeping  9 hours   15  minutes.Prior  to using  the  cpap i  had  to get up atleast three  times  a night to  use the loo  often  finding  it  difficult to  drop of again.My   AHI  4 weeks ago  on  my  sleep test was  22.38    this  morning  it was   recorded  at just 3.3 ....is it  really possible for such a difference  on  the first  night..  Its  always  nice  to  hear  from  others  as  i   have been suffering   for over  a year  now   with   a  very  high  anxiety  level ..  also often  very  tired  are  these common symptoms....along   with  a  tight  chest  and  often  had  to  gasp  for  air  very  frightening..

Hi again Frankam and was glad to be of help and reassurance.  I was speaking with one of your nurses earlier and told her of your great overnight success, and she was really pleased.  The nurses aren't here on the forum but they are in the FB group.  Hope night 2 goes well.....

frankam said:

Well i finally  made  it  here..thanks  for  all  the  help   and advice fromKath  who has  been a great  help.I used  my philips  cpap machine  last  night for  the  first time  with full facial  mask.Slept  without  having  to get up  once after sleeping  9 hours   15  minutes.Prior  to using  the  cpap i  had  to get up atleast three  times  a night to  use the loo  often  finding  it  difficult to  drop of again.My   AHI  4 weeks ago  on  my  sleep test was  22.38    this  morning  it was   recorded  at just 3.3 ....is it  really possible for such a difference  on  the first  night..  Its  always  nice  to  hear  from  others  as  i   have been suffering   for over  a year  now   with   a  very  high  anxiety  level ..  also often  very  tired  are  these common symptoms....along   with  a  tight  chest  and  often  had  to  gasp  for  air  very  frightening..

Those adrenaline shots when you stop breathing and your brain wakes you up can certainly send you dashing to the loo.  CPAP worked for me too (diagnosed 2008). Great night's sleep on night one, and only got better.

frankam said:

Slept  without  having  to get up  once after sleeping  9 hours   15  minutes.Prior  to using  the  cpap i  had  to get up atleast three  times  a night to  use the loo ... .is it  really possible for such a difference  on  the first  night..

An  update  here  tonight  is  my  6th  night with  the cpap...The  first  night  was  great  slept  solid,however the last three  days  i just could  not  sleep solid   was  awake  about  every  hour.The  next  day  i was here  falling asleep in  front of  the  computer and  felt  tired  onwards..My  machine  is set    from  4  rising  to ten.When it  reaches  ten i  find it   to   strong  for  me.Can i reduce  this  to  say 6  at  Max   starting  at 4 .Can anyone advise  me  thanks...


Frankam, you're with a very good sleep clinic who remotely check and monitor your therapy so please don't try to adjust any settings.  If the machine needs to go up to a pressure of 10 it's because that pressure is needed to treat the apnoeas.  It's not uncommon for a few teething problems to come up after the 1st night, as on that 1st night you will have been so sleep deprived that you slept through all the pressure changes.  Sometimes, just a little perseverance is needed to get used to the pressure changes which eventually don't wake most of us up.  If you give your clinic a call they'll access your data and see if anything needs altering which they will do at their end.


frankam said:

An  update  here  tonight  is  my  6th  night with  the cpap...The  first  night  was  great  slept  solid,however the last three  days  i just could  not  sleep solid   was  awake  about  every  hour.The  next  day  i was here  falling asleep in  front of  the  computer and  felt  tired  onwards..My  machine  is set    from  4  rising  to ten.When it  reaches  ten i  find it   to   strong  for  me.Can i reduce  this  to  say 6  at  Max   starting  at 4 .Can anyone advise  me  thanks...

Hi

I have been using xPAP fo around 15 years and have never really for it to work for me. I am joining this forum with eh aim of getting my AHI below 5.

I have been using a Respirinicas Comfort Gel nasal mask for a long time now and it is well overdue to switch to another mask.

So my first task is to do that and the two main candidates are either the wisp or the ResMed Mirage FX.

Other than that I have been told elsewhere that I probably need an ASV machine but at the moment I'm using BiPAP.

Co-morbidity makes my case extra complex and hard to treat. I have also been diagnosed with Periodic Limb Movement Disorder, and in the closing year (hopefully) of a five-year long taper from Clonazepam, a med that was prescribed to treat my PLMD, with disastrous results.

As I say, as far as CPAP goes if I can get my AHI below 5 (and preferably as close to 0 as possible) then that will be as much as CPAP can do for me.

 

Hi. I was diagnosed about 3 years ago with severe sleep (45 AHI). I'm 63, fairly active and only slightly overweight. My AHI came down to 9 after about 12 months and I get about 7 hours sleep a night. Despite their best efforts my clinic has not been able to get my AHI down below 9. Usually, I get up to go to the toilet after about 3.5 hours and usually get back to sleep quite easily. I use a Philips Dream Station and a full-face mask and I am predominately a mouth breather. Even though my AHI is down to 9 I still get early morning brain fog and fatigue. Recently my condition has gone back to my pre sleep apneoa diagnosis - brain fog, fatigue and falling asleep during the day. I have had blood tests which have come back negative. I've not been able to get to the sleep clinic because of the covid pandemic. Has anybody had any similar experiences? Has anybody got any advice to give me in the absence of not being able to get to my sleep clinic?

Hi Crabbleite

I can't speak for the Resmed Mirage FX, but we've sold the Wisp for years at the charity and our site has all 5 star reviews.  The DreamWisp is the newest version with the difference being the hose comes out of the top of the mask and to be honest I prefer masks with the hose at the top like the DreamWear range (I use the DreamWear full face as I'm a mouth breather).

Well done on tapering off the Clonazepam if it wasn't helping you.

Regarding your higher AHI, there can be lots of reasons for this, but it's also worth considering if you definitely ONLY breathe through your nose during sleep as that could cause a higher AHI.  Also though the fact you say you may need ASV could also be part of the reason.

Crabbleite said:

Hi

I have been using xPAP fo around 15 years and have never really for it to work for me. I am joining this forum with eh aim of getting my AHI below 5.

I have been using a Respirinicas Comfort Gel nasal mask for a long time now and it is well overdue to switch to another mask.

So my first task is to do that and the two main candidates are either the wisp or the ResMed Mirage FX.

Other than that I have been told elsewhere that I probably need an ASV machine but at the moment I'm using BiPAP.

Co-morbidity makes my case extra complex and hard to treat. I have also been diagnosed with Periodic Limb Movement Disorder, and in the closing year (hopefully) of a five-year long taper from Clonazepam, a med that was prescribed to treat my PLMD, with disastrous results.

As I say, as far as CPAP goes if I can get my AHI below 5 (and preferably as close to 0 as possible) then that will be as much as CPAP can do for me.

 

In one way John, bearing in mind your AHI was 45 on diagnosis, 9 is very good, although if you're still experiencing the brain fog and tiredness etc., it's a pity the clinic haven't managed to get it lower despite them trying.  Sometimes when people are on auto CPAP (APAP) and have the minimum pressure raised that often helps, although I'm sure your clinic have tried that.   It would be good to know if you still had those symptoms with an AHI of 5 or below because then you'd know if they're linked to your sleep apnoea or not.  I say this, because when people have an AHI of <5 and still have symptoms we advise they get blood tests for vitamin D or B12 deficiency, thyroid and diabetes - all of which are linked with sleep apnoea and cause the same symptoms.  It would still be worth having them done if you haven't.

John Wilkinson said:

Hi. I was diagnosed about 3 years ago with severe sleep (45 AHI). I'm 63, fairly active and only slightly overweight. My AHI came down to 9 after about 12 months and I get about 7 hours sleep a night. Despite their best efforts my clinic has not been able to get my AHI down below 9. Usually, I get up to go to the toilet after about 3.5 hours and usually get back to sleep quite easily. I use a Philips Dream Station and a full-face mask and I am predominately a mouth breather. Even though my AHI is down to 9 I still get early morning brain fog and fatigue. Recently my condition has gone back to my pre sleep apneoa diagnosis - brain fog, fatigue and falling asleep during the day. I have had blood tests which have come back negative. I've not been able to get to the sleep clinic because of the covid pandemic. Has anybody had any similar experiences? Has anybody got any advice to give me in the absence of not being able to get to my sleep clinic?



Kath Hope said:  “...but it's also worth considering if you definitely ONLY breathe through your nose during sleep as that could cause a higher AHI...”

Crabbleite, maybe you are one of the relative minority like me, who find that with CPAP you physically cannot breathe through your mouth (or even talk) when the machine is on. Indeed, for the first 15 years or more I thought that was how the thing worked - i.e. if your mouth is closed you no longer snore, job done. Also like you my AHI would not go below five, whatever the clinic or I tried in the way of settings. A combination of things have worked for me, with AHI now 1-2, occasional zero. These were:

1. Sleeping position - stay on side as much as possible.

2. Pressure - fixed at 8.5 works for me (I was sceptical when the clinic nurse said try fixed rather than auto, but it’s true. Fixed 8, fixed 9 or 8-9 auto are all less effective)

3. Change in blood pressure meds. This was the single biggest AHI reducer for me. But the sleep clinic won’t accept it (preliminary investigations in the US seem to support my experience though)

4. Mask - the latest F&P Evora nasal mask records a measurable drop in AHI compared with any of the numerous others I have used.

Hope this may help, but with the caveat that I am far from the typical OSA patient, though I can’t be unique.

 

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Steve player is now a member of Hope2SleepGuide
Saturday
Crabbleite replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Thanks Kath. I am going to start adapting to the mask by wearing it in the day at first. Once I get one or two nights on it I reckon I will be OK. other forums have said there is no point in tweaking my pressure because of the high leak rate and I…"
Saturday
Bill Thomson replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"but it's also worth considering if you definitely ONLY breathe through your nose during sleep as that could cause a higher AHI...” Crabbleite, maybe you are one of the relative minority like me, who find that with CPAP you physically…"
Saturday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"In one way John, bearing in mind your AHI was 45 on diagnosis, 9 is very good, although if you're still experiencing the brain fog and tiredness etc., it's a pity the clinic haven't managed to get it lower despite them trying. …"
Friday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Crabbleite I can't speak for the Resmed Mirage FX, but we've sold the Wisp for years at the charity and our site has all 5 star reviews.  The DreamWisp is the newest version with the difference being the hose comes out of the top…"
Friday
John Wilkinson replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi. I was diagnosed about 3 years ago with severe sleep (45 AHI). I'm 63, fairly active and only slightly overweight. My AHI came down to 9 after about 12 months and I get about 7 hours sleep a night. Despite their best efforts my clinic has…"
Friday
Crabbleite replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi I have been using xPAP fo around 15 years and have never really for it to work for me. I am joining this forum with eh aim of getting my AHI below 5. I have been using a Respirinicas Comfort Gel nasal mask for a long time now and it is well…"
Wednesday
Crabbleite is now a member of Hope2SleepGuide
Wednesday
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Frankam, you're with a very good sleep clinic who remotely check and monitor your therapy so please don't try to adjust any settings.  If the machine needs to go up to a pressure of 10 it's because that pressure is needed to…"
Jan 18
frankam replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"An  update  here  tonight  is  my  6th  night with  the cpap...The  first  night  was  great  slept  solid,however the last three  days  i just could  not …"
Jan 18
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Those adrenaline shots when you stop breathing and your brain wakes you up can certainly send you dashing to the loo.  CPAP worked for me too (diagnosed 2008). Great night's sleep on night one, and only got better."
Jan 18
ScottishSleepyHead updated their profile
Jan 16
Steve C is now a member of Hope2SleepGuide
Jan 15
Kath Hope replied to ScottishSleepyHead's discussion Newly diagnosed not sure what happens next - Scottish NHS
"Yes it can be a shock to get the results of a sleep study Mark and to find out you're stopping breathing 24 times per hour, because this is happening whilst asleep so most often the sufferer is totally unaware of this.  This forum is…"
Jan 15
ScottishSleepyHead replied to ScottishSleepyHead's discussion Newly diagnosed not sure what happens next - Scottish NHS
"Hi Kath, thank you for the quick response. Until last February I had never heard of sleep apnea, so it's been a bit of a journey until now even. When the GP first explained sleep apnea as being asleep and your throat closing then you stop…"
Jan 15
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi again Frankam and was glad to be of help and reassurance.  I was speaking with one of your nurses earlier and told her of your great overnight success, and she was really pleased.  The nurses aren't here on the forum but they are…"
Jan 14
Kath Hope replied to ScottishSleepyHead's discussion Newly diagnosed not sure what happens next - Scottish NHS
"Welcome Mark and good to hear you got diagnosed and will hopefully soon be treated.  An AHI of 24 is classed as moderate sleep apnoea (30 and above is severe).  Good that you don't drink as it makes sleep apnoea worse.  Being…"
Jan 14
ScottishSleepyHead posted a discussion

Newly diagnosed not sure what happens next - Scottish NHS

Hi,Firstly my names Mark and I am totally alien to all of this.I had a sleep test done by the Scottish NHS about 14 weeks ago, after waiting since January to get it, given all the Covid problems I thought that was quite quick. The results came back…See More
Jan 14
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Jan 14
frankam replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Well i finally  made  it  here..thanks  for  all  the  help   and advice fromKath  who has  been a great  help.I used  my philips  cpap machine  last  night for …"
Jan 14

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