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

Views: 12996

Reply to This

Replies to This Discussion

 Hi everybody My name is Ann and I have been using my Cpap for about 3/4 years I think. I am overweight and try to control my diet so I will lose weight and hopefully reduce my need for it.  I was doing ok, but then I needed a new mask and am feeling claustrophobic with it! My next apppointment with the sleep consultant is not til May next year but I am feeling very tired as I also have trouble with my balance as a result of encephalitis 12 years ago I will have to see if I can get an earlier appointment but the clinic is very busy. I feel at a loss for what to do.

Hi again Ann and sorry to hear you're struggling, and whilst your tiredness is building up this will not be helping you to lose weight.  The important thing is to get you back on good therapy.  You're obviously not new to CPAP, so what is it about this particular mask that's making you feel claustrophobic?  Has your clinic changed you over to a different style?

I was on a nasal mask but it was making my nose sore so they tried a different kind but I have struggled with it. I had a new sleep study in August I am waiting for the result.I phoned the clinic about it, they say the man who deals with it has had a bereavement  Spain they said to call again in 2 weeks and they will have the result for me then.

Kath Hope said:

Hi again Ann and sorry to hear you're struggling, and whilst your tiredness is building up this will not be helping you to lose weight.  The important thing is to get you back on good therapy.  You're obviously not new to CPAP, so what is it about this particular mask that's making you feel claustrophobic?  Has your clinic changed you over to a different style?

Ann, if you've been changed over to a full face mask from a nasal mask, and aren't a mouth breather, then that could be making your feel claustrophobic.  There are comfort products out there to help with a sore nose one our shop website at http://www.hope2sleep.co.uk/products and also check my blog about the different kind of masks available http://www.sleepapnoeablog.com/choosing-a-cpap-bipap-masks-for-slee... 

3 months waiting for sleep study results seems a long time, even though there are problems with the clinician.  Hope you hear very soon.

Hi  Everyone,

My name is Wanda and I was diagnosed with OSA in October.  My insurance has just authorized my CPAP so I am waiting my appointment.  I am going into my therapy with a positive attitude expecting to thrive not just survive with my CPAP.  I look forward to getting to know everyone better and thanks to Terry for letting me know about this forum.

Welcome here Wanda and your going to make it, I know.

That's great to hear Wanda.  Terry's obviously done good work with you already and being well-armed with prior knowledge is a great bonus - as is having support on forums and a positive attitude.  Look forward to hearing how you're thriving soon

Today, I was able to schedule my appointment for Thursday with the respiratory therapist of my DME company.  So by Thursday night I hope to be sleeping soundly with my CPAP.
 
Kath Hope said:

That's great to hear Wanda.  Terry's obviously done good work with you already and being well-armed with prior knowledge is a great bonus - as is having support on forums and a positive attitude.  Look forward to hearing how you're thriving soon

How did your first night go Wanda?

Wanda Polk said:

Today, I was able to schedule my appointment for Thursday with the respiratory therapist of my DME company.  So by Thursday night I hope to be sleeping soundly with my CPAP.
 
Kath Hope said:

That's great to hear Wanda.  Terry's obviously done good work with you already and being well-armed with prior knowledge is a great bonus - as is having support on forums and a positive attitude.  Look forward to hearing how you're thriving soon

Hi Kath,

It is 9:20 PM Thursday night; therefore, I am just about to get read to go to bed.  I will let you know tomorrow.  Thanks for remembering.



Kath Hope said:

How did your first night go Wanda?

Wanda Polk said:

Today, I was able to schedule my appointment for Thursday with the respiratory therapist of my DME company.  So by Thursday night I hope to be sleeping soundly with my CPAP.
 
Kath Hope said:

That's great to hear Wanda.  Terry's obviously done good work with you already and being well-armed with prior knowledge is a great bonus - as is having support on forums and a positive attitude.  Look forward to hearing how you're thriving soon

Good luck Wanda will look out for your report tomorrow, have a good sleep.

Here's the report from my first night.  I feel more alert this morning but with a slight headache and an impression on my forehead.  The machine I was given is the Remstar Auto A flex with humidifier.  My mask is a ResMed Mirage Quatto FF.  My sleep therapist was good and very detailed; however, as I prepared last night I realized I still had questions. I cleaned my makeup  off with a makeup remover wipe that I usually use.  But I did realize that it was the hydrating type.  I will get a different type today.  I followed Kath's suggestion of also washing my face with plain water and then used a flannel.  My first challenge that was not discussed at my appointment was the height to plan my CPAP.  I reviewed the book and it said to place it at a level lower than your sleeping position.  Luckily what I purcahsed had 2 shelves. My bed is fairly high because I have a thick deep pocket mattress. I had leaks all night.  Mostly when I would change positions.  I used my pappillow last night but tried Terry's suggestion and saw how that would work.  I took off and attempted to reposition the mask at least 4 different time.  At 1 time on my side I was fine but when I changed postiions I would get leaks.  I decided to still keep it all to get what benefit I could and to become accustomed to wearing it.  I keep it on from 10:30 PM to 4:00 AM.  I kept hassling with the tubing so I tried Terry's suggestion of putting it hanging it over my headboard.  Everytime I shifted my husband would say hah because the tubing sliding would wake him.  So long story short my mask leaking was my problem but I do remember about 1 hour of wonderful sleep.  This morning I am not sure what to do with the tubing.  I am going to use a wipe to clean my mask but do I then store it in the mask bag?  I plan to empty the water out of the humidifer, rinse it out with tap water and then let it air dry.  Suggestions, advice, recommendations etc are greatly appreciated.  Thanks!

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Jonathan replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Nov 9
Collette rose replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
Nov 3
Jonathan replied to Collette rose's discussion 1st time and I’ve failed the mask leak test
"Hi My first thought is "don't panic"!  We're all a bit different, and there are many things that can be tweaked.  I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
Nov 2
Collette rose posted a discussion

1st time and I’ve failed the mask leak test

Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Nov 2
Collette rose is now a member of Hope2SleepGuide
Oct 31
John posted a discussion
Oct 30
Profile IconBill Wright, Nicole Watson, TJ Bennett and 2 more joined Hope2SleepGuide
Oct 29
John replied to John's discussion evil mask noise
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
Oct 24
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep.  Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
Oct 24
Jonathan replied to John's discussion evil mask noise
"Good to know you found a solution!"
Oct 24
John replied to John's discussion Has anyone been told root cause of their OSA?
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
Oct 21
John replied to Jonathan's discussion ResMed AirSense 10 getting noisy
"Can't say I know about this."
Oct 20
John replied to John's discussion evil mask noise
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
Oct 19
John replied to John's discussion evil mask noise
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
Oct 17
Jonathan posted a discussion

ResMed AirSense 10 getting noisy

HelloI have an NHS issued ResMed AirSense 10 with heated humidifier.  In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
Oct 16
Jonathan replied to John's discussion evil mask noise
"Hi My first question is why is condensation forming?  I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away.  I use a nasal mask, with the humidifier…"
Oct 16
John replied to John's discussion What's a good Apnea forum?
"11K+? Ok that's probably where I should look then :-)"
Oct 16
Kath Hope replied to John's discussion What's a good Apnea forum?
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
Oct 16
John posted discussions
Oct 16
Jonathan replied to John's discussion Has anyone been told root cause of their OSA?
"There's some information here, but generally it's very common and likely due to our anatomy."
Oct 12

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service