Newbie - experience so far

[Gekko]

Hi everyone,

Firstly, let me say that as a newbie, a forum such as this is invaluable. While my doctor and my CPAP supplier are both helpful, they both seem to be opposed to any "tinkering", whereas I, having a scientific bent, believe that some intelligent tinkering is the only way to optimise treatment.

Secondly, for those of you who are interested, I am on my second week of treatment. I'm 36, male, live in Sydney, Australia, overweight (about 20% over "ideal" weight) and have snored for as long as I remember. Even at the tender age of 18, I would get complaints about my snoring. I get the feeling it developed into sleep apnea in my mid 20's, but I never really thought it was a problem until the last 2-3 years, when I started to feel tired all the time, I put on about 10kg in a year (!) despite not changing my eating habits, and I felt like I was always a step behind in everything (work, relationships, etc.)

I took the plunge, saw a specialist and did two sleep studies. I definitely had sleep apnea, with an average of 40 events an hour (severe according to the specialist). My longest apnea was 67 seconds (that statistic scared the f* out of me). Strangely, my oxygen saturation was 89% (which seemed high considering the severity of my apnea). He put me on conventional CPAP at a pressure of 14. That was the beginning of my plunge into the wonderful world of CPAP therapy

On a side note, I had a long history of minor allergies as a child. It follows that I had a long history of blocked or runny noses. I became a bit of mouth breather (which didn't really help my social life at times!). I never got it treated, so by the time I was 30, I had huge polyps in my nose. They had completely blocked one nostril and my other nostril was 60% blocked. This meant I became a permanent mouth breather, which obviously added to the snoring. I saw an ear, nose and throat surgeon. He operated to remove the polyps, resection my turbinates and also correct a deviated septum. However, even though I could now breathe, it didn't help my snoring, and I still (sometimes) breathe through my mouth, even when I am awake and not concentrating. I'm trying to train myself to stop this bad habit, with mixed results.

I'll go into my treatment in the next post in this thread

[brazospearl]

Gekko,
Welcome to the forum, and congratulations on taking your therapy into your own hands! Keep us posted.

[Gekko]

Onto the second part of my story. My first night with a CPAP machine was during my second sleep study. They strapped on a full face mask (in view of my tendancy to mouth breathe). I remember being quite tired that day, because I'd had a long day at the office. I was quite thankful about being tired, because I thought that would make sleep easier.

They strapped on the mask and started at a pressure of about 5. It felt like a gentle breeze and I was relieved that it didn't feel like air was being forced down my throat. The mask had a couple of small leaks but with a little fiddling they tightened it to the point where there were no leaks. It was a Repironics Comfort Gel Full Face Mask. I did feel like the mask was a little intrusive and tight, but I told myself I'd get used to it. Then, I remember getting into bed at about 10pm and wondering whether I would fall asleep. I was out like a light! I remember almost waking up a couple of times with a feeling like I was choking (which was not a new sensation to me, considering my condition). As I woke up, the choking sensation went (obviously they were dialing up the pressure). However, apart from almost waking up (very briefly) a couple of times, I remembered nothing until I woke up quite early in the morning with a major mask leak (the sound of the leak woke me up). I rang the buzzer and a nurse came in, retightened the mask and I was off to sleep in about 1 minute. The next sensation I had was the nurse waking me up at 6:30am. This contrasts with me waking up, on average, about 7-8 times every night. Getting up was a strange feeling. I had read a lot about CPAP treatment and I wasn't naive enough to think that I would be the lucky few that would feel amazing after one day of treatment. However, while I didn't feel amazing, I did feel "different". I didn't feel as tired as I normally do, I felt surprisingly clear headed and everything seemed somehow brighter (maybe that was partly psychological). I also remember dreaming, which was a newish sensation to me (I don't remember dreaming since my late 20's!!). They gave me my prescription with my pressure set at 14 and I was on my way.

Third part of the story to come soon

[dave21]

Hi everyone,

Firstly, let me say that as a newbie, a forum such as this is invaluable. While my doctor and my CPAP supplier are both helpful, they both seem to be opposed to any "tinkering", whereas I, having a scientific bent, believe that some intelligent tinkering is the only way to optimise treatment.

Ha, you'll find a lot of doctors are like that. I'm also of the same belief like many people here in the forums that it's better to know what's going on and to help change your medication in small increments to better be compliant and ensure treatment is working. It always amazes me that Diabetics are asked to check their figures on a daily basis but Sleep Apnea patients aren't asked to check their figures. I think long term that will probably change over time and the medical profession will change it's views about people self administering their pressure. It's already happening with some doctors.

I took the plunge, saw a specialist and did two sleep studies. I definitely had sleep apnea, with an average of 40 events an hour (severe according to the specialist). My longest apnea was 67 seconds (that statistic scared the f* out of me). Strangely, my oxygen saturation was 89% (which seemed high considering the severity of my apnea). He put me on conventional CPAP at a pressure of 14. That was the beginning of my plunge into the wonderful world of CPAP therapy

Wow that's a long Apnea. Mine were all around the 15 second mark but I had 141.2 off of CPAP and similarly that scared the crap out of me too when I heard the figures. The sleep nurse started to try and beat around the bush as though she didn't want to tell me because she thought it might scare me too much.

I'm glad you're getting treatment and hopefully staying compliant and finding it easy.

Thanks
Dave

[Gekko]

Thanks brazospearl and dave21 I hope I not only learn a lot on here, but that, as my knowledge increases, I pass a bit of knowledge back to the community.

[pdean44]

Great story and you are off to a good start.

[Gekko]

Now, onto getting my machine. I'm in Australia and there seems to be little true competition in the AU market (someone may prove me wrong). I looked up some Internet sites, got a list from the hospital and also downloaded some distributor lists from manufacturer websites. On calling some of the dedicated CPAP vendors, it seemed that they were very keep to get me in for an "interview". I can understand their desire to service the customer properly, but I generally do a lot of research beforehand and would prefer a supplier who will just sell me stuff without the 6 hour mesmirsing pitch.

On top of that, I was facing a weekend and few vendors open on weekends. I had called a few vendors on Friday afternoon and they all wanted to see me "next weeK". On a whim, I decided to go to a local chemist (pharmacy) on Sunday morning. Turns out they carried a full range of machines. I tried a few masks and the Resmed Quattro seemed to be the most comfortable. I talked to the pharmacist about the Fisher and Paykel Icon series (I wanted something that I could take travelling) and he told me he didn't have any preferences and was happy to sell me whatever I preferred (music to my ears). He told me he had no rental models in stock, but that he'd have some by Wednesday.

The next few sleeps were anxious. After the feeling I got from the sleep study, I was getting a little paranoid about the "damage" I was doing every time I slept without CPAP. Funny how it didn't worry me for years!

Wednesday came around and it turns out the pharmacist had got a Respironics machine in for me. To be honest, I was a little disappointed, because I had assumed that since I had asked a million questions about the F&P machine, that he had got the hint! Anyway, it wasn't a big deal. I got a Respironics System One A-Flex on a two month rental. It was set on CPAP mode (not APAP) and he had turned on the c-flex+ mode (which I thought, at the time, was a good thing). It also had the humidifier module.

More in the next post...

[Gekko]

Moving onto the first night. I got the machine home, spent a lot of time poring over manuals, etc. Filled the humidifier, set it to "2", got everything set up. Put on the mask and turned on the machine (which was set to blast out a pressure of 14). I must admit, I wasn't ready for it! It was quite a high pressure. The mask leaked like crazy and I had a terrifying vision of not being able to get the mask to work (since I'd heard horror stories from people on various forums).

Luckily a little fiddling fixed all the leaks. After I got a seal, I noticed that c-flex kicked in quickly. At first, the decreased pressure on exhalation seemed to make things easier to handle, but I did find it a little unnatural. After a while, it felt like I was controlling my breathing in response to the machine. It felt like the machine was pacing me, rather than the other way around. However, I decided to stick with c-flex for the first night.

I got into bed at about midnight and pressed the ramp button. The pressure dropped to 5 and I felt like this wasn't going to be so bad after all. I fell asleep with the machine slowly ramping up.

At about 3am, I woke up and found the mask faithfully placed on the bed side table! I was a little non plussed about this development as I had no memory of removing the mask, but I was also too tired to put the mask back on. I fell back to sleep and woke up about 5am with my usual feeling of tiredness. At that point I forced myself to put the mask back on. I slept through till 8am (didn't hear the alarm at 7am).

I woke up feeling a little better than usual but not as great as my sleep study night. I also had a bit of a dry mouth. I realised that there would need to be a lot of fiddling before I had this worked out

One more post to come.... day two to the present compressed into one final post!

[SnoreSnoreSnore]

Gekko, I also found myself ditching my mask in the middle of the night for my first several weeks on CPAP. Sometimes, I wouldn't remember doing it. Other times, I would remember waking up to discomfort from the mask and consciously removing it. As I've browsed around the forum, this seems to be fairly common when starting CPAP.

Getting fitted with the correct type and size of mask was an early challenge for me because of a poor DME. (Masks are not supposed to create bruises and sores!) Once that problem was solved, however, I was able to gradually adjust and soon was sleeping through the night with my mask in place. Partly, I think I simply got used to sleeping with a mask on my face as time went on. Gaining experience with positioning the mask and adjusting the headgear to achieve a fit that was both comfortable and effective was a factor, too. I have found that headgear tends to stretch over time and require occasional readjustment to maintain a good fit.

Sounds like you're off to a good start with your therapy.