advice on sleeping better with sleep apnoea

Replies to This Discussion

Permalink Reply by Terry Vella on May 3, 2013 at 22:29

Welcome Karen, I'm certainly not a teenager but all of us on here knows how he feels. The good news is he and you have found out about it early and are doing something about it, unlike a lot of us that go through life undiagnosed. How long has he been on CPAP? Has he had any of his results looked at yet? You can telll a lot by the data that comes from his machine. He may be getting lots of leaks so even though his is using his CPAP he may no be getting the full benefit. Can you let us know the brand and model of the machine he is using and brand and model of mask.

Also if possible do you know what his AHI is that is the amount of times on average per hour he stops breathing fror 10 secs or more, he would have got that from his sleep study, his Dr or the hospital will know, it is important so we know the serverity of his sleep apnea and whether his CPAP is working effectively or not. 

The other thing is, is he practising good sleep hygiene, he doesn't have to go to sleep very early but he has to be consistent with the times he goes to bed and when he wakes up even on weekends, also small things like not having a computer on late etc. The final thing is the amount of time it takes for people to start to heal is different for everyone, most take about 3 - 6 months to really feel the effects but it depends on how bad his sleep apnea is as well.

Hopefully we can help him and you and give you both the support you need, it is daunting at the start.

• ▶ Reply

Permalink Reply by Colin on May 4, 2013 at 18:15

Hello Karen,  I too am new to this also being recently diagonosed with severe sleep apnea myself but certainly can not be regarded as teenager at 50yrs old! 

Now I am by no means an expert and am sure those more qualified to comment on the forum will shortly. As a newcomer, I thought I would just say your son is not alone in feeling tired even though he is using the mask/machine.

I have had only 4 nights on CPAP having just started my trial and I must say I do not really feel any different, and actually if anything am still feeling tired when I wake up. It is only because I invested in a wrist oximeter and the results recorded on this that I can confirm and see the true value of CPAP as they show even after my first nights sleep my readings are approaching that of "normality"!

I was contemplating posting something myself about how long it was before people notice any difference but Terry( thanks by the way!) has anwered this for me in his reply to you.

Regards

Colin
 
Terry Vella said:

Welcome Karen, I'm certainly not a teenager but all of us on here knows how he feels. The good news is he and you have found out about it early and are doing something about it, unlike a lot of us that go through life undiagnosed. How long has he been on CPAP? Has he had any of his results looked at yet? You can telll a lot by the data that comes from his machine. He may be getting lots of leaks so even though his is using his CPAP he may no be getting the full benefit. Can you let us know the brand and model of the machine he is using and brand and model of mask.

Also if possible do you know what his AHI is that is the amount of times on average per hour he stops breathing fror 10 secs or more, he would have got that from his sleep study, his Dr or the hospital will know, it is important so we know the serverity of his sleep apnea and whether his CPAP is working effectively or not. 

The other thing is, is he practising good sleep hygiene, he doesn't have to go to sleep very early but he has to be consistent with the times he goes to bed and when he wakes up even on weekends, also small things like not having a computer on late etc. The final thing is the amount of time it takes for people to start to heal is different for everyone, most take about 3 - 6 months to really feel the effects but it depends on how bad his sleep apnea is as well.

Hopefully we can help him and you and give you both the support you need, it is daunting at the start.

• ▶ Reply

Permalink Reply by Kath Hope on May 4, 2013 at 22:17

Hi Karen

It was nice talking to you the other day and (as per our conversation) let us know what the hospital says, but it can take a while until people feel the benefits.  How is your son coping with the fact that he has to use CPAP?  I say this because depression can cause tiredness too, and I know you said he has to lose weight too so the poor lad will probably be feeling really daunted.  It's sad that there are no support groups for people in this age group, but this seems to be the age group with the least diagnosed people in it.  Do tell your son that we would be happy to have him here on the forum, or in the Facebook Group, bearing in mind the children seem to prefer this https://www.facebook.com/groups/218156906792/

Hope he starts to feel better soon.

• ▶ Reply

Permalink Reply by Terry Vella on May 5, 2013 at 0:13

Welome Colin, I probably didn't address how long it take, the answer is how long is a piece of string? I can only go be what I found and others I know have said, is that after the first night and sometimes the first week of CPAP use, you get a sudden rush of new found energy, I believes it's because we have been so oxygen and sleep deprived for so long, our bodies can really feel the change. Then it seems to taper off for a while and we are still tired during the day and during the following months it slowly seems to get better. We probably can't see that effect as it is slower than the initial burst. Most people say it takes 3-6months to really see any major effect, that's also how long it took me, but I still can get tired during the day even after two years of CPAP, maybe that's normal for us 50 year olds but I do have so much more energy thatn before. I go to the gym everyday and walk 5 kilometres every night, 3 years ago I could hardly walk. The other indicators are how we feel, in my case my depression lifted and I have been off all meds for nearly a year now, my eyesight has improved, the hairs on my legs have grown back and each year when I see my skin specialist for a skin check my skin is getting beter and better these can't be co-incidences. Finally I think it comes down to how long we have had SA and how servere it is that determines the amount of time it takes to heal, all I know is it's not an exact science.

• ▶ Reply

Permalink Reply by Kath Hope on May 5, 2013 at 1:12

It's certainly not exact science Terry, as things differ from person to person.  I agree with the 3-6 months for the main benefits, but that depends on whether the person is on the best therapy.  Without the data from the machine that's difficult to say and here in the UK lots of people are given machines that provide no data.  The hospitals are more interested in the hours of useage than anything else.

I had an interesting experience.  Decided to check my 02 levels the other night with the sleep testing equipment we hire out.  I was shocked to see lots of 02 desats, right down to 80% as that's not usually a problem for me.  However, just lately I've woken with difficulty breathing with the mask on.  Bearing in mind I buy my own masks as my hospital don't supply the one I use, I try to get every last bit of life out of them before I swap to a new one.   This often involves tightening the mask more than normal when it's at the end of it's useful life.  Anyway, I swapped last night to a brand new mask and lo and behold, this morning my 02 levels were back up again to normal with no desats.  (I rest my case...).

• ▶ Reply

Permalink Reply by Terry Vella on May 5, 2013 at 6:13

Colin, if you can tell me the brand and model of machine you have I can teel you whether it is data compatible and if so can point you in the direction of software to use and how to read it. From Kath's point I would say it may be the base model which is not data capable. In Australia, you get the choice because you basically have to pay for it yourself, the only problem with that is most people would go for price and not understand about data capable machines and Auto versus straight CPAP when making the decision. The world has a long way to go with giving people the best treatment for this illness.

Kath, just on your point with the O2 levels, I suppose it raises the question that if people are still tired after months of CPAP they need to look to see if there is anything else that is causing them to not get the full and proper treatment.

 

• ▶ Reply

Permalink Reply by Philip Dallinger on May 6, 2013 at 9:07

Hi Kath

I have just read your reply above and yes I am struggling lately with my mask, the one I was raving about a few months ago coping with my beard! The Philips Amara. How long would expect the face seal to last?

I wash the mask and my water tank daily in water and Fairy liquid and leave to dry all day in the bathroom. The mask strap is laundered  each week wrapped in a sock! so not to damage the velcro the last strap lasted less than six months ..

Just lately I wake in pain from my bladder and don't  really need to go to the bathroom about three times a night! I still suffer  (all be it less often) with night sweats, feeling cold at night, some abdominal pain when I wake up.

Is it worth talking to my clinic to see if I have the right machine and the right settings?

Cheers Phil

• ▶ Reply

Permalink Reply by Kath Hope on May 6, 2013 at 9:47

Fairy Liquid is no doubt the culprit Philip, as whilst it's kind to our hands with the added ingredients it is not kind to our masks as some of these stay behind on the seal and gradually build up a barrier on the seal which ends up causing mask leaks.  Even some of the cheaper brands of washing detergents contain these.  I discovered this in the early days, which is why I swapped to the CPAP Cleaning Wipes which stop this, and apart from anything are quick and easy (and I'm all for that, lol).  I use these for 6 days a week and on the 7th day (when I clean the hose) I use the CPAP Cleaning Spray and this is the only day water ever touches my mask, as the spray needs rinsing off, but the wipes don't.

If we were in the US Medicare allows for mask cushion replacement every  3 months and complete mask system replacement every 6 months.  I have to buy my own masks so I need them to last as long as possible.

I'm wondering if the fact that you're probably getting more air leaks is the pain your experiencing as you're no doubt swallowing air.

What machine are you using?  Was wondering if you have access to the data.

• ▶ Reply

Permalink Reply by Philip Dallinger on May 6, 2013 at 12:46

Hi Kath

I always have used fairy !! DOH looks like I will have to send an order in!!

The machine I am using is a Philips Responics Remstar Auto Aflex with a humidifier fitted.

Yes I can read the numbers they let you i.e 

Large Leak   0% over 7days

                   2% over 30days

AHI             4.7% over 7days

                  5.6% over 30 days

Periodic Breathing 0% over 7 & 30 Days

The machine as an SD card I did try and use Sleepy Heads software to read it but it went right over my head!!

Cheers Phil

 

• ▶ Reply

Permalink Reply by Kath Hope on May 6, 2013 at 12:56

Lol - I learnt the hard way too and I reckon if the manufacturers had brought out the cleaners they'd be recommending we use them too lol.

You are welcome to post a screenshot of your Sleepyhead results if you want some help and also have a look at the video section on the forum, as I added some videos about reading the data from Sleepyhead

• ▶ Reply

Permalink Reply by Kath Hope on May 6, 2013 at 13:11

Yes, I learnt the hard way too Phil and I bet if the manufacturers had brought out the cleaning products they'd be recommending we use them

You're welcome to share a screenshot of your Sleepyhead stats if you want any help, and I added some videos on the forum of help with Sleepyhead too.  Sounds like your therapy is going well though.

Philip Dallinger said:

Hi Kath

I always have used fairy !! DOH looks like I will have to send an order in!!

The machine I am using is a Philips Responics Remstar Auto Aflex with a humidifier fitted.

Yes I can read the numbers they let you i.e 

Large Leak   0% over 7days

                   2% over 30days

AHI             4.7% over 7days

                  5.6% over 30 days

Periodic Breathing 0% over 7 & 30 Days

The machine as an SD card I did try and use Sleepy Heads software to read it but it went right over my head!!

Cheers Phil

 

• ▶ Reply

Permalink Reply by Kath Hope on May 6, 2013 at 22:51

Good idea Mary - there may be more teenagers on the US forums.

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• Next ›
• Page