Sleep Apnea Forum Bringing Power to the Patient
Just Started my Treatment 2 Days Ago
Hello everyone!
I wanted to formally introduce myself as I have been lurking on this forum for several days now. I'm sorry if this, my first post here, gets a bit long winded. I'M not always like that ;)
I got my CPAP machine and started my treatment 2 days ago on Thursday Feb 4th. My journey through the health care system to the realization that I may have sleep apnea to starting my treatment started about 13 months ago when my family doctor recommended I get tested. I've read a lot of threads here in the last few days and went through a lot of the same experiences many of you went through.
But first thing's first. My name is Stéphane, I'm a 45 years old French Canadian man and I live about 20 miles due east of Montreal in a gorgeous small town. I live with my life partner of 18 years Isabelle and I'm a freelance Web designer and developer working from home in my small business.
Regarding sleep apnea, I'd been struggling with sleep apnea related problems for years without realizing where they came from. They included struggling with my weight and having a hard time getting it under control, no matter what I tried to memory issues and, in the last year, an increasing difficulty to concentrate on my work for long periods of time. That's in addition to traditional symptoms like sleepiness, general lack of energy, waking up with headaches, etc, etc.
It was after talking to one of Isabelle's cousins who is younger than I am and had been dealing with even more severe symptoms that we started suspecting I may have sleep apnea. I booked an appointment with my family doctor and he ordered some tests for me. Now, in Canada, healthcare may be free but there are other drawbacks. He asked for the tests in January 2009 but the hospital didn't call me until October, 10 months later. Up here we go through the pulmonology department of large enough hospitals to get tested. The upside though is that we can usually take the test at home which I did.
The test determined that I had severe sleep apnea with 42+ events an hour and oxygen often going down in the low 70s and sometimes lower. My average heart rate at night was higher than when I'm sitting down being a couch potato and watching TV. Above all else, that fact really scared me...
A month later, the hospital lent me a CPAP machine (a Respironics M series Auto-CPAP) to determine the pressure level for my treatments. I brought it home with a full face mask to keep for an entire weekend (3 nights). I didn't notice the mask model I had but it was very uncomfortable and I had to keep it very tight to avoid leaks. I also fully woke up 3 or 4 times a night for the 3 nights I had it. When I woke up, it was usually because the mask had moved and was leaking like crazy with 15 to 18 pressure blowing in my face. Felt like a leaf blower directed right at my face. Very uncomfortable to say the least. Despite that, even after the first night, I woke up more rested and refreshed than I had in years...
When I brought the CPAP back, the test data determined I needed a pressure of 15 with a range of 4 to 18. As I said I really hated my test mask but liked how the Auto-CPAP reacted and adapted to my breathing although, when it reached the full 15 pressure, it wouldn't really go down unless I closed it and started it again. One thing is for sure though, I don't think I could handle a fixed CPAP machine, especially set at 15...
So when I saw my doc again about 3 weeks ago, he prescribed an auto-CPAP machine with humidifier because dry mouth and nose was another thing I experienced during my 3 nights of test. After that I started researching my options and discovered that Respironics had recently released a successor to the M Series I'd used during my test so that is what I asked my DME for when I realized it is one of the 3 choices they had. As I hoped, I am very happy with how the System One works. It "feels" much smarter than the M Series and reacts even faster to my breathing. Looking at my data after 2 nights, it seems the 90% pressure is 8 so almost half of my presciption. I woke up only once Thursday night and not at all last night and I slept about 7 hours both nights.
I think the magic ingredient here apart from the System One is the mask I chose which is the ResMed Mirage Activa LT (nasal). It is extremely comfortable and *never* leaks which probably explains my 90% pressure of 8. Makes me even happier I didn't choose a fixed CPAP machine. I modified a coat hanger to have the hose coming from above and behind me which means I can turn on either side without the hose tugging on my mask as it had with the test mask and machine. I sleep mostly on my back but sometimes turn on either side. The Activa is also a LOT quieter than the one I had for testing.
So now I've just had my 2 most restful nights in years and, although I feel great today, I can feel my "sleep debt" underneath and it feels like it will take me a while to get back to normal... But I feel very lucky, one that I have a great doctor, and secondly, that I could get the machine and mask *I* wanted eventhough I have to pay for them myself in full.
Finally, it is very nice to "meet" you all! I'll certainly have questions to ask and will try to help with my experience when I can. Have a great weekend and, sleep well!
I wanted to formally introduce myself as I have been lurking on this forum for several days now. I'm sorry if this, my first post here, gets a bit long winded. I'M not always like that ;)
I got my CPAP machine and started my treatment 2 days ago on Thursday Feb 4th. My journey through the health care system to the realization that I may have sleep apnea to starting my treatment started about 13 months ago when my family doctor recommended I get tested. I've read a lot of threads here in the last few days and went through a lot of the same experiences many of you went through.
But first thing's first. My name is Stéphane, I'm a 45 years old French Canadian man and I live about 20 miles due east of Montreal in a gorgeous small town. I live with my life partner of 18 years Isabelle and I'm a freelance Web designer and developer working from home in my small business.
Regarding sleep apnea, I'd been struggling with sleep apnea related problems for years without realizing where they came from. They included struggling with my weight and having a hard time getting it under control, no matter what I tried to memory issues and, in the last year, an increasing difficulty to concentrate on my work for long periods of time. That's in addition to traditional symptoms like sleepiness, general lack of energy, waking up with headaches, etc, etc.
It was after talking to one of Isabelle's cousins who is younger than I am and had been dealing with even more severe symptoms that we started suspecting I may have sleep apnea. I booked an appointment with my family doctor and he ordered some tests for me. Now, in Canada, healthcare may be free but there are other drawbacks. He asked for the tests in January 2009 but the hospital didn't call me until October, 10 months later. Up here we go through the pulmonology department of large enough hospitals to get tested. The upside though is that we can usually take the test at home which I did.
The test determined that I had severe sleep apnea with 42+ events an hour and oxygen often going down in the low 70s and sometimes lower. My average heart rate at night was higher than when I'm sitting down being a couch potato and watching TV. Above all else, that fact really scared me...
A month later, the hospital lent me a CPAP machine (a Respironics M series Auto-CPAP) to determine the pressure level for my treatments. I brought it home with a full face mask to keep for an entire weekend (3 nights). I didn't notice the mask model I had but it was very uncomfortable and I had to keep it very tight to avoid leaks. I also fully woke up 3 or 4 times a night for the 3 nights I had it. When I woke up, it was usually because the mask had moved and was leaking like crazy with 15 to 18 pressure blowing in my face. Felt like a leaf blower directed right at my face. Very uncomfortable to say the least. Despite that, even after the first night, I woke up more rested and refreshed than I had in years...
When I brought the CPAP back, the test data determined I needed a pressure of 15 with a range of 4 to 18. As I said I really hated my test mask but liked how the Auto-CPAP reacted and adapted to my breathing although, when it reached the full 15 pressure, it wouldn't really go down unless I closed it and started it again. One thing is for sure though, I don't think I could handle a fixed CPAP machine, especially set at 15...
So when I saw my doc again about 3 weeks ago, he prescribed an auto-CPAP machine with humidifier because dry mouth and nose was another thing I experienced during my 3 nights of test. After that I started researching my options and discovered that Respironics had recently released a successor to the M Series I'd used during my test so that is what I asked my DME for when I realized it is one of the 3 choices they had. As I hoped, I am very happy with how the System One works. It "feels" much smarter than the M Series and reacts even faster to my breathing. Looking at my data after 2 nights, it seems the 90% pressure is 8 so almost half of my presciption. I woke up only once Thursday night and not at all last night and I slept about 7 hours both nights.
I think the magic ingredient here apart from the System One is the mask I chose which is the ResMed Mirage Activa LT (nasal). It is extremely comfortable and *never* leaks which probably explains my 90% pressure of 8. Makes me even happier I didn't choose a fixed CPAP machine. I modified a coat hanger to have the hose coming from above and behind me which means I can turn on either side without the hose tugging on my mask as it had with the test mask and machine. I sleep mostly on my back but sometimes turn on either side. The Activa is also a LOT quieter than the one I had for testing.
So now I've just had my 2 most restful nights in years and, although I feel great today, I can feel my "sleep debt" underneath and it feels like it will take me a while to get back to normal... But I feel very lucky, one that I have a great doctor, and secondly, that I could get the machine and mask *I* wanted eventhough I have to pay for them myself in full.
Finally, it is very nice to "meet" you all! I'll certainly have questions to ask and will try to help with my experience when I can. Have a great weekend and, sleep well!
Replies to This Discussion
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Permalink Reply by Mike on -
Stephane, I am pleased to welcome you to the SleepGuide community. You have already made a valuable contribution here with your story, which I'm sure will inspire a lot of people. By the way, I love Montreal -- I actually speak French (rusty now), and the restaurant and night scene in that city are amazing.
The thing about your story which is remarkable to me is how much the odds were stacked against you to ever reach the position you're in now. You had to wait about a year to see anyone once you suspected you had Sleep Apnea, and then they set you up with a ridiculously wide open pressure range of 4 to 18, and a full-face mask that sounded sub-optimal to say the least. Now you've set yourself up with the PR System One and the Mirage Activa LT Nasal Mask and are getting good treatment while having your pressure setting hover at about the 8 mark. "Pas mal," as they say in French.
You're really an inspiration. Great to have you here.
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Permalink Reply by Stephane Bergeron on -
Thanks for your kind words and welcome Mike! You are very kind.
Montreal and the entire area is indeed a great place to live. Where I am is the best of both worlds I think. It's almost the country (we like nice and quiet) but close to everything at the same time. We love it here.
If my story can help anyone I'm happy. Regarding the delay I faced to get tested, the nice lady who served me at my DME explained that, when a family doctor or a generalist requests the sleep test, the wait is a lot longer (as I can attest) than if the request comes from a pulmonary specialist. This is ridiculous to me as, in my case, it resulted in my continuing to tax my heart, brain and health needlessly for all these extra months.
The other thing I found odd is that, the staff at the hospital was less than forthcoming with helpful information, both in terms of the severity of my condition and the related consequences. My family doctor, as great as he is, is not a sleep disorder specialist so couldn't advise me as well. I have another appointment with him soon though and I'll discuss my experience with him so he can direct other patients through the system better in the future. I learned more from the people at my DME than I did from anyone at the hospital, including the fact that my doctor could and should have requested specifically that I meet a pulmonary specialist at the hospital. It was probably a given in his mind that it would happen as he is a very conscientious doctor that takes extra time with each of his patients to discuss their concerns, but it didn't happen.
I also learned more about the nuts and bolts of dealing with Sleep Apnea from the good people here. This forum is great and has a nice relaxed and friendly vibe. I love it!
But as I said before, regardless of my experience getting here, I feel extremely lucky because I seem to be adjusting to my treatment very well. It also seems I was lucky with my choice of equipment (even if I informed myself beforehand). I'm surprised how well my nasal mask is working for me as I used to be a mouth breather. But I'm having no mouth leaks so far and certainly noticed none from the mask itself. I haven't looked at my detailed nightly data yet but my leak average is so low that the System One lists it as 0 now in both the 7 and 30 days average. I can't wait to see if it holds up like that for the full first 7 and 30 days. Fingers crossed!
My level of comfort is also surprising me. I'm not claustrophobic so wearing the mask was not "scary" to me as it seems to be for some but I'm a guy that can't even tolerate a watch on my wrist or rings or anything "foreign" on me besides clothes. I can't say it's pleasant to wear a mask all night, but it's certainly not as uncomfortable as I feared it might be (thank the Mirage Activa LT for that!). The results are certainly worth it though as I already feel better than I have in a long time after only 2 days.
So all in all, I consider myself very lucky to be in the position I am right now facing a better future with better health as well as more energy, productivity and happiness. It feels like I have a new lease on life and I certainly intend to make the best of it!
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Permalink Reply by Rock Hinkle on -
Welcome to sleepguide Stephane. I hope you enjoy it as much as I do.
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Permalink Reply by Mary Z on -
Welcome, Stephane. Thanks for sharing your story with us. I, too, admire your dedication in following up and dealing with you apnea.
Mary Z.
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Permalink Reply by Stephane Bergeron on
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Thank you Rock and Mary! I can already tell this is a great group of kind and helpful people.
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Permalink Reply by sleepycarol on -
Hi Stephane,
I am glad you are off to a good start, although it was a long journey to get there. Do not be surprised if some days are not as good as others. We all tend to have "those" nights and don't worry if there are bumps along the way.
You mention sleep debt. Be sure and listen to your body as it may crave some payment on that debt.
Glad you found the forum and good luck.
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Permalink Reply by Carl Speas on -
Hi welcome to this site. You will find alot of helpful people and information here. Many of us have been through long struggles to find right help. It sounds like you have gotten off to great start already.
It took me close to 10 years to find the answer to my sleep problems.
Welcome and good luck to you
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Permalink Reply by Judy on -
Welcome to the forum, Stephane.
In Canada you have to pay for your CPAP and equipment IN FULL out of pocket??? Or you have to pay in full because of the APAP you chose?
Its good to read you are doing so well so soon. Congratulations!
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Permalink Reply by Stephane Bergeron on
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Judy said:Welcome to the forum, Stephane.
In Canada you have to pay for your CPAP and equipment IN FULL out of pocket??? Or you have to pay in full because of the APAP you chose? Its good to read you are doing so well so soon. Congratulations!
Thanks for the warm welcome Judy!
I have to pay for my machine because I'm a freelancer. I have no company/private insurance plan that covers the equipment itself and the government doesn't pay for it either. They probably would if I was on welfare though. On the other hand, I didn't have to pay for my doctor visits or for my visits at the hospital or any fee for the equipment they lent me for being tested. If I was still working for my old employer, I might have had a small deductible to pay for my machine but otherwise it would have been covered in full.
Carol and Carl, thank you both very much as well for your warm welcome.
This is truly a great place and I'm happy I found it so early in the process of my sleep apnea therapy. I know that, for now at least (this is early for me), I'm doing and adapting much better than many other people from what I read here and on other sleep apnea forums. It makes it easier to deal with the fact that I probably will have to depend on a machine to sleep well for many years to come if not for the rest of my life. That is not the kind of thing anyone wishes for themselves. But I'm just saying it this once and I won't dwell on it. That is not my style. Also, I feel too good right now to focus on negative thoughts. But for some reason, tonight I feel sad about it, like something very precious has been taken away from me and I'll never get it back.
But enough of that. Thank you all again for making me feel right at home!
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Permalink Reply by Judy on
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Stephane, you are the ideal CPAP therapy patient. You've educated yourself well!! What you have accomplished is so very impressive and hopefully an inspiration to newcomers to educate themselves and take an active part in their therapy.
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Permalink Reply by Stephane Bergeron on
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Judy said:Stephane, you are the ideal CPAP therapy patient. You've educated yourself well!! What you have accomplished is so very impressive and hopefully an inspiration to newcomers to educate themselves and take an active part in their therapy.
You re too kind Judy! :) But I do like to be well informed when I have important decisions to make. Just makes sense no?
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Permalink Reply by sleepycarol on
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I think the vast majority of us at one time or another wishes our bedtime ritual was more "natural". I do know that I don't want to go back to feeling crummy pre-diagnosis so I will keep using my machine. But do I ever wish I could just hop into bed and not mask up -- you bet!! That kind of thinking doesn't happen often, but does on occassion.
You have the right frame of mind Stephane that you will make it. The way technology is advancing who knows what the future holds for us.
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