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Why do I feel worse this week than I did my first week on CPAP?

My first week was amazing. I was awake, alert and no longer living in a fog. We celebrated by going out to the cinema and I stayed awake! All was great but then for the past four days I feel just as I did before. I have no energy and  have dozed off every day during the day and generally feel grotty.

I had problems with the Mirage Quatro which kept leaking around my nose and cheeks. To combat it I tightened it up a lot but then my face was painful. The clinic suggested I try the Mirage Liberty. It has been more successful in not leaking nearly so much but I felt as though I was suffocating when I first put it on. It wouldn't allow me to breathe.Other than when I first turn it on it seems to work okay. Has anyone else had such experiences?

Another question,

I have been reading about other peoples' experiences and all seem to know how many AHIs they have etc.I have no idea what has been happening to me. How can I find out?

Thank you

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It sounds like your having some teething problems Judith getting the right mask for you (been there, done it, worn the t-shirt lol).  It's a pity you can't see your AHI then you'd know if you were getting successful treatment, but as far as I'm aware, the S9 Escape is the only Resmed machine that doesn't show it :(

Keep persevering with the masks, and hopefully you'll be going back to the hospital soon for a review.  Mention the way you're feeling now, and they might want to adjust the pressures or help you better with the mask.  In fact, it would be worth ringing them to see if you can get in soon.

Judith, welcome, most people get an instant feel of being fresh after they have the second sleep study and after the first day of using CPAP at home, I'm not a Dr but believe it has been so long since our body have had oxygen and we are so deprived of it, it's like an instant fix. I seems to taper off for a while and then you slowly start to recover long term. We are all different so this can take weeks or months for our bodies to heal from the years of lacking oxygen. I say to everyone it's a marathon not a sprint but we all want it the other way around. At least you know that it will work if you give it time and you have had a 'taste' of what it will be like. For the masks, I use the Mirage Quattro and whichever mask you use thakes time to get used to it and you may need to try a few before you find the right one, it took me 5 masks from pillows to the full face. Two tips, always have the hose coming from above you head either over your bed head or you can buy a hose lift from Kath, gravity pulls the mask up rather than down and you don't get tangled and use mask liners they help with the seal, I think Kath sells them or you can buy a 6 pack from Remzzzs over the net. If they work we can tell you how to make them which is cheaper than buying them. With the AHI, I use a Resmed S9 Auto which is similar to yours, you should see the daily use and AHI on the screen, it's best to use it that way as a guide first, I think you can buy the software from Resmed but unless you fully understand it you may as well stick with getting the mask etc right first, hope that has helped and keep at it.

Thank you Terry, I was thinking that maybe I was doing something wrong or that I was imagining how well I felt at first. 

I hadn't thought of having the hose coming down from above and can easily hook it over the end of the bed. I think I might buy a nasal CPAP cushion to take the pressure off my nose. I haven't heard of mask liners. I will have a look on Kath's shop for them.

Last night I used the Quattro for half the night them when I couldn't get the seal to stay at put below my eyes and on my cheeks I gave up and swapped for the Liberty which did me til 7am. I don't suppose it matters if I switch halfway through the night so long as I get the number of hours on CPAP that I need.

We don't stock the mask liners Judith, as another supplier got sole UK rights on them.  However, most people only used to buy one pack anyway and make their own like Terry says.

Judith, it doesn't matter if you swap masks during the night, it's just a hassle that you have to wake up to do it. If the leak is coming from the bridge of the nose, tighten the top straps, if it's from the mouth tighten the bottom straps but try not to be tempteted to tighten them too much. Re the liners, I copied and pasted from a previous post 'I bought some Reszzz's liners a 6 pack and although they say to only use them once you can wash them and get about 5-6 uses. I then made a template of what I needed from their liners and went to a fabric shop and got 3 ft of 50% cotton/ 50 % poly fabric and cut out my own and they also last 5-6 uses, the next time I bought 3 ft of 50% cotton/ 50 % lycra fabric. That last me about 3 months and costs about ten dollars. No need to do any sewing'.

Terry, I swap masks when the leakage is getting too much and I change to the other which seems to keep the seal for about 3 hours.

Last night I woke up with my Liberty mask on but no seal or nose pillows. They were in the bed somewhere and I had lost them during the night. It was good that I had the option to just grab the other and use it until 6ish when it was leaking all over and I gave up. I have ordered some Reszzz's on Amazon as I will get quick delivery, couldn't find them in Kath's shop. And I am ordering a nose cushion.

The seal is good when I go to sleep but the Quattro is so tight now it is painful and it becomes leaky after around three hours. I am hoping the Reszzz's will help keep the seal for longer and I can use just one mask. The clinic want one back soon anyway. Not sure which one to give back yet though......

The leak comes below my eyes so more at sides of my nose. The clinician said I have a narrow bridge.

Judith -Ann, I understand why you swap them, it's just a pity you have to swap them. It's always hard because they don't make a mask that's one size fit's all. Try the liners they helped me greatly. I know this sounds strange but don't tighten it so much that it's painful. Also try your hose from above your head. There is a company that custom makes masks but you would have to buty it and I'm sure there not cheap. I know how frustrating it is because you want to wear it and you get others that don't want to wear one and it works for them first go. Also if the air is blowing in your eyes be careful your eyes don't get too dry. I keep a bottle of eyedrops next to my bed and some mornings give them a squirt. You will eventually get there it just takes time and we've got a lot of that.

Thanks Terry, I am seeing my GP this afternoon so will ask for some eye drops. I have a pre payment prescription card so it won't cost me anything.

I have only used this forum for two days and have had lots of ideas and ways to relieve the problems I am having. Last night I hooked the hose over the headboard but it didn't stay there for long :) I think one of my problems is that I move around too much, always have done.

Tonight's plan is to undo the straps a bit, use an old wire coat hanger to fix the hose above my head as a temporary measure, and wash everything in Ecover washing up liquid as it has no nasty chemicals in it. I tried a different washing up liquid last week.

What I have also been doing is staying awake once the mask leaks get too much. It means I am not sleeping at all without a mask. Hopefully that way I have fewer apnoeas. Hubbie had to wake me one morning last week as I was not breathing when the mask had come off and I had gone back to sleep.

I forgot, I went through 5 different masks at the start from nasal pillows to nasal mask then 3 full face masks and in the and decide to stick with the Mirage Quattro and get al the bugs out. We have a different system in Australia where you can rent equipment for the first 3 months and change as many times as you want and in the end you get that rent off your purchase price. The only problem is insurance only covers about 25% of the cost of the mask and machine so mine cost about $2,000 but it is the best $2,000 I have ever spent. You can't put a price on your health. I don't know if you've tried the one Kath likes I think it's the Go Life.

Kath, I will ask at clinic if they can see my AHIs on the data card. It wopuld be nice to know that my efforts are working. I am going to see them next week for a bit of help, hopefully.

Kath Hope said:

It sounds like your having some teething problems Judith getting the right mask for you (been there, done it, worn the t-shirt lol).  It's a pity you can't see your AHI then you'd know if you were getting successful treatment, but as far as I'm aware, the S9 Escape is the only Resmed machine that doesn't show it :(

Keep persevering with the masks, and hopefully you'll be going back to the hospital soon for a review.  Mention the way you're feeling now, and they might want to adjust the pressures or help you better with the mask.  In fact, it would be worth ringing them to see if you can get in soon.

Do you restart the machine when you wake up and find you have leaks, this can also help as it's like you putting the mask on from the start. Also, you should have a ramp feature on the Escape which increases your pressure over time, I have mine set to 30 mins so it doesn't reach it's maximum for the first 30 mins after turning it on. This is extremely helpful in the middle of the night.

Judith, the CPAP Hose Lift is one of the best inventions ever for hose management, and I've said this before, but I actually think it should be part of our equipment - ie mask, machine and hose lift. 

Judith-Ann Wardlaw said:

Thanks Terry, I am seeing my GP this afternoon so will ask for some eye drops. I have a pre payment prescription card so it won't cost me anything.

I have only used this forum for two days and have had lots of ideas and ways to relieve the problems I am having. Last night I hooked the hose over the headboard but it didn't stay there for long :) I think one of my problems is that I move around too much, always have done.

Tonight's plan is to undo the straps a bit, use an old wire coat hanger to fix the hose above my head as a temporary measure, and wash everything in Ecover washing up liquid as it has no nasty chemicals in it. I tried a different washing up liquid last week.

What I have also been doing is staying awake once the mask leaks get too much. It means I am not sleeping at all without a mask. Hopefully that way I have fewer apnoeas. Hubbie had to wake me one morning last week as I was not breathing when the mask had come off and I had gone back to sleep.

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