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Sleep Apnoea Forum Bringing Help + Support to the Patient

Hi all,

So I have been through what I guess most members here have, being provided with an NHS CPAP machine and mask, only to find that I cannot get to sleep wearing the mask.  So, one by one, you go through the different NHS-available masks until you find that none of them provide enough comfort to be able to sleep in.  Not only this, but the NHS nurses run out of patience with you because you are not trying "hard enough".

In the week, when you are at work, you need SOME sleep, so you would rather get some poor quality sleep without the mask than none at all because of trying the mask on, so you try to use it only on Friday and Saturday nights.

Then, you find someone like Kath, who understands this situation and manage to find a mask which you can sleep in through hope2sleep.  This is where I now find myself.  I am able to sleep, finally, with a mask on.  My problem now is that I still feel tired when I wake up.  My wife says that I sleep well with it on, but when I wake up (with the exception of one night so far, when I woke up at 7am feeling really refreshed) I still feel exhausted.

I have only had my new mask for 12 days and have changed the headgear to the Softcap Mesh in that time.  Am I expecting to feel the benefit too quickly?  Could it just be psychological and in fact my head is just telling me I SHOULD still feel tired when I wake up because I have been so used to it being the case?

I should add that I am suffering with and use medication for, both depression and type 2 diabetes, so it's possible that these conditions or their medications are counterproductive to me, sleep-wise.

I appreciate that we all will have very varied experiences in our own individual cases, but how long after getting your mask did you "feel the benefit"?  What are your experiences?

Thank you for your time,

Simon.

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Hi Simon,

I'm afraid it can take quite a while to get used to sleeping with a cpap machine and especially to wearing a mask. There's no magic bullet and its necessary to persevere and not give up on a mask too easily. The perseverance does gradually pay off and you will get used to wearing them.

On the mask front, it's really important to experiment with things like the tightness of the straps and how the straps are fitted round your head (eg ensuring that the straps are placed symmetrically).

But perhaps the most important (& in some ways the most difficult) thing is accepting that the only effective solution to sleep apnea is using a cpap machine. It's not easy, but once you've reconciled yourself to that, you'll have opened the door (so to speak) to improved sleeping and a much better quality of life.

All the best

Pete

Simon, firstly thank you very much for your kind words, and it really does make me smile and is a real reward when I hear from people I've been able to help.  What I am sorry to hear is that you have come across nurses who lost their patience with you.  There are some very supportive ones out there, but sadly as in all walks of life, there are some that aren't too!  Only a person who has to wear the mask with often a hurricane blowing through all night can really empathise, but it saddens me when I hear that clinicians aren't at least giving sympathy and support for what is truly a life saving therapy   In this respect I am very fortunate, and my own sleep consultant has a saying..... "you have to kiss many frogs until you find your prince" and this is so true for many of us (me included).  I must have gone through practically every full face mask that was on the market years ago when I was first put on CPAP until I found one I could bear, and it was another 2 years until I finally hit gold when I discovered the FitLife (incidentally the same one that's come to your rescue).  This is still my all time favourite for my issues, but I am fortunate enough to now have some other good masks I can use too, and believe me I never thought this day would come!

As for your tiredness.....it's good that you have had a taste of one morning when you woke up refreshed and even though it isn't happening regularly at the moment, more importantly your body is being protected from all the damage untreated sleep apnoea can do.  I agree with Pete's response to you and I'll address a few issues below:-

  1. You've only been 12 days of having continuous CPAP therapy, so give it a bit longer as you will have accrued a lot of sleep debt which needs paying back to your body.
  2. Make sure you're doing your best to get a good 7-8 hours of sleep with the CPAP on all the time, and try not to take it off and fall back to sleep, or you're likely to wake up with a headache and your heart will have been under pressure again.  If possible try also to get to bed before midnight (and I need to listen to my own advice here .
  3. Make sure you're looking after your diabetes well, as this can cause tiredness if not well controlled.
  4. As you state, some medications can cause daytime tiredness, and in fact sleep problems.  Just a short while ago I added some information on this which you can find on this link http://hope2sleepguide.co.uk/profiles/blogs/medications-affecting-s...  However, more often than not people do need this medication so for anyone reading this, please DO NOT stop any medication without speaking to your GP.  Sometimes meds such as anti-depressants can be changed times of use which can improve things, but again a GP should be consulted first.
  5. Another issue which is often overlooked, is that it is beneficial that people have evidence that their sleep apnoea is actually being controlled well and that their AHI is brought down as low as possible (ideally below 5, which is considered 'normal').  Unfortunately, many clinics don't supply machines with this information - only compliance data to prove someone is using their therapy, and this is indeed important in the case of drivers complying with DVLA's rules.  Sometimes, although clinics aren't able to supply these data-capable machines, they can loan them out for a week or so to check that the sleep apnoea is being well controlled on the prescribed pressure.
  6. Several other medical conditions cause daytime tiredness, so it's worth having blood tests for thyroid, B12, diabetes (though not in your case as you already have this), and vitamin D.

I hope some of this information is helpful Simon, but don't give up on your wish to feel more alert during the day.  I've had many elderly people say that when on good therapy they feel 20 years younger, so there's no reason why this can't happen for you now you're on therapy

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