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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 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!

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