6 months in and still feel rough

maccknight · Post by **maccknight** » Sat Sep 12, 2015 7:24 am

Hi

I started CPAP in February and initially started to feel better. However for the last two months have been feeling rough and worse.

I tried to get an appointment with my Consultant but the first availiable appointment is at the end of November. My Doctor doesnt really know how to help but has referred me to an ENT specialist as I cannot breathe through my nose hardly at all.

I can see I am having problems with leaks and have tried tightening and loosening but still seem to be getting them. No matter how hard I try to sleep on my back I always end up on my side or front. I am single so there is no one to help try and keep me on my back.

I also seem to have a lot(I think?) of Flow limitations but dont really understand what they are.

I have enclosed a few shots of Sleepyhead data and any help would be really appreciated.

maccknight · Post by **maccknight** » Sat Sep 12, 2015 7:45 am

Julie · Post by **Julie** » Sat Sep 12, 2015 8:43 am

Hi - first thing is - why on earth are you trying to back sleep? It's the worst position to provoke more apneas.
There is no reason to do it tho' you might have been asked during your study to do it so they could get a baseline 'worst' case scenario for their records.

Try not doing it at all for a few nights and see how that goes. Also, you shouldn't have to overtighten the mask at all - it keeps the thin silicone from inflating as it should. If your mask has not been well sized or fitted properly (lying down - your face changes a lot then) with a machine on, you need to be refitted by someone knowledgable, or else get a diff. size or diff. mask altogether. There are many diff. types of full face masks and you should not have to 'manage' with one that doesn't feel comfortable or leaks.

Someone else will comment on your graphs, but it's best to post them excluding the calendar, but including the text 'results' that appear below it.

49er · Post by **49er** » Sat Sep 12, 2015 8:56 am

Hi,

This discussion might be helpful in understanding flow limitations. They are air flow restrictions that don't meet the definition of an apnea/hypopnea but can be quite disruptive.

viewtopic/t52092/Another-dumb-question- ... ation.html

I will let others comment on your graph in detail but it is quite obvious, you have a problem. I think your sleep doctor's advice about seeing an ENT because you can't breathe through your nose is right on target. Whether this is responsible for all your flow limit issues, I can't say since I am not a doctor but it sure can't be helping.

As far as sleeping on our back, the idea of having a cpap machine with the right pressure is so you can do this and not have to worry about sleeping on your side if you don't want to. Perhaps I am missing something but I wanted to throw that out there. Again, I will let the experts work with you on your graphs and adjusting the pressures.

49er

maccknight wrote:Hi

I started CPAP in February and initially started to feel better. However for the last two months have been feeling rough and worse.

I tried to get an appointment with my Consultant but the first availiable appointment is at the end of November. My Doctor doesnt really know how to help but has referred me to an ENT specialist as I cannot breathe through my nose hardly at all.

I can see I am having problems with leaks and have tried tightening and loosening but still seem to be getting them. No matter how hard I try to sleep on my back I always end up on my side or front. I am single so there is no one to help try and keep me on my back.

I also seem to have a lot(I think?) of Flow limitations but dont really understand what they are.

I have enclosed a few shots of Sleepyhead data and any help would be really appreciated.

Julie · Post by **Julie** » Sat Sep 12, 2015 9:01 am

Good point about being able to back sleep without provoking more apneas if you use Cpap. However, it is kind of fighting nature (how many fewer events would you have even on Cpap if you don't back sleep), plus FF masks tend to leak (and fart) worse on backs - hard to fit perfectly, though Padacheek.com liners might help some.

maccknight · Post by **maccknight** » Sat Sep 12, 2015 9:16 am

I wasnt given a choice of masks - they only had that one and only in a medium size. I have bought myself a F & P one in a large but still seem to get leaks.

I had a grand total of five minutes of being shown how to put it on while sat in a chair.

I have asked to go back and have my data looked at and look at the mask and fitting and the first appointment was in 3 months time.

I was trying to sleep on my back in case rolling around in the night was causing the leaks

Julie · Post by **Julie** » Sat Sep 12, 2015 9:50 am

See if you can get to try on as many masks as possible while waiting - or do you not have any access to dealers, etc? Here, Cpap.com will let you try diff. masks for a month if you pay a small fee for insurance. One other thing - there may be a video (YouT) on fitting the mask you have - I know there are some on newer models... so see if you can find one while waiting for new ones.

Pugsy · Post by **Pugsy** » Sat Sep 12, 2015 10:42 am

You should be able to sleep in any position that allows you to sleep the best.
If by chance that happens to be on your back and your OSA is markedly worse or need more pressure then sometimes it's just better to let the machine deal with it. If leaks are less of a problem on your back then so be it.
I don't know how much of those flow limitations are nasal or otherwise but you might try a higher minimum pressure just to see if it helps or not. The rather large fluctuations in pressure can make it difficult to keep a good seal. You pretty much have to fit for the higher pressure when you are first starting the night though the above graph doesn't necessarily point to the large leaks being totally related to higher pressures.
Large leak territory on the Icons is 60 L/min...above that is considered large leak.

Finding the right mask is the hardest part to this therapy IMHO. You have to use a full face mask due to nasal issues and full face masks simply have more area touching the skin that needs to seal.
Mask liners help a lot of people so that's something you might look at. There are ready made mask liners (Remzzs or padacheek.com has some really nice ones that last a long time) or you can even make your own out of an old T shirt.

Full face masks aren't as forgiving when it comes to incorrect size...so you might measure your face to make sure the size you are using is correct. If you go to cpap.com and each full face mask usually has a sizing guide where you can print off a template to check measurements.

Full face masks are expensive. Cpap.com has a return insurance policy where you pay a small additional fee and if the mask doesn't work you can get your money back. They even provide a prepaid shipping label.
There are a couple of masks that have free return insurance..so you can save some money there.

This mask is relatively new but I know some people who have had good success with it.
https://www.cpap.com/productpage/respir ... -mask.html
It has free return insurance. Don't let the price scare you off...call for pricing but I think it is $140.

This mask also has free return insurance
https://www.cpap.com/productpage/resmed ... dgear.html

Check cpap.com mask product page as most will have fitting videos available for the various masks.

LSAT · Post by **LSAT** » Sat Sep 12, 2015 10:49 am

maccknight wrote:I wasnt given a choice of masks - they only had that one and only in a medium size. one in a large I have bought myself a F & P but still seem to get leaks.

I had a grand total of five minutes of being shown how to put it on while sat in a chair.

I have asked to go back and have my data looked at and look at the mask and fitting and the first appointment was in 3 months time.

I was trying to sleep on my back in case rolling around in the night was causing the leaks

Your profile shows that you are using a Quattro Air mask...is that the original mask you were given.

maccknight · Post by **maccknight** » Sat Sep 12, 2015 10:55 am

Yes the quattro is the original one I was given. I got the F & P one to see if that made ny difference

Tdub210 · Post by **Tdub210** » Sat Sep 12, 2015 12:51 pm

49er wrote:Hi,

This discussion might be helpful in understanding flow limitations. They are air flow restrictions that don't meet the definition of an apnea/hypopnea but can be quite disruptive.

viewtopic/t52092/Another-dumb-question- ... ation.html

I will let others comment on your graph in detail but it is quite obvious, you have a problem. I think your sleep doctor's advice about seeing an ENT because you can't breathe through your nose is right on target. Whether this is responsible for all your flow limit issues, I can't say since I am not a doctor but it sure can't be helping.

As far as sleeping on our back, the idea of having a cpap machine with the right pressure is so you can do this and not have to worry about sleeping on your side if you don't want to. Perhaps I am missing something but I wanted to throw that out there. Again, I will let the experts work with you on your graphs and adjusting the pressures.

49er

I read the string but I didnt really get a conclusion. I have a lot of FL's as well with a low AHI. Does bumping the pressure work to reduce them? Or do they even really need to be reduced?
maccknight wrote:Hi

I started CPAP in February and initially started to feel better. However for the last two months have been feeling rough and worse.

I tried to get an appointment with my Consultant but the first availiable appointment is at the end of November. My Doctor doesnt really know how to help but has referred me to an ENT specialist as I cannot breathe through my nose hardly at all.

I can see I am having problems with leaks and have tried tightening and loosening but still seem to be getting them. No matter how hard I try to sleep on my back I always end up on my side or front. I am single so there is no one to help try and keep me on my back.

I also seem to have a lot(I think?) of Flow limitations but dont really understand what they are.

I have enclosed a few shots of Sleepyhead data and any help would be really appreciated.

Tdub210 · Post by **Tdub210** » Sat Sep 12, 2015 12:53 pm

I dont think I quoted right. I read the string in the older post about FL's. But does bumping the pressure up work to reduce them or are they something I shouldn't even worry about? Some nights I'll have 25 or so FL's. The hypopnea tend to be about half the number of FL's. My OA's are always 3 or less. And my AHI is almost always below 2. Usually around 1.5

maccknight · Post by **maccknight** » Sun Sep 13, 2015 10:25 am

Last nights results. Still lots of Flow Limitations and feel really tired and cannot stop yawning.

The FL's seem to appear to be roughly the same whatever the pressure

Julie · Post by **Julie** » Sun Sep 13, 2015 10:54 am

Just a thought, but something that's worked well in others with similar problems is wearing a soft cervical collar when sleeping - it keeps your head up, helping better airway opening, and also acts as a jaw prop if mouth breathing is a problem. You might do a forum search to see other comments.

maccknight · Post by **maccknight** » Sun Sep 20, 2015 2:30 am

Last nights results

I have tried a collar and it made no difference. Also tried a steamer and decongestants to clear my nose. Any help would be greatfully appreciated as I am absolutely desperate to get some relief and really struggle just to get through each day

6 months in and still feel rough

6 months in and still feel rough

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Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

Re: 6 months in and still feel rough

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