Hello All… Based on some of the discussion above I think I'm going to try the CPAP tonight without the humidifier. I'm guessing I can do that by just not filling the tank.
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@scout138 I too have had multiple bouts with PTS – first time at about (age 20). I had a couple of rounds in my early 20's. Both of those affected by scapulas and caused winging of the scapula. It took years to recover and even then the movement in my shoulder and back is not "normal" but I get everything done I need to do! This latest round (age 57) has affected my arm, elbow and hand. I could NOT agree MORE with you about RANGE OF MOTION! I completely lost the usage of my right hand and have had to work very hard to get it back. Still have alot of pain and discomfort but so much better than last summer. Would highly recommend to all that if you have hand usage problems (index finger became rigid and unbendable) that you go to a HAND specialist! None of the multiple neurologists I went to seemed to care about my hand issues and THAT was the only thing I cared about! I went to the hand specialist on my own without a referral because I knew he could help me… and so far he's the only one who has helped!!
Hello @nychole3080 – You mentioned Parsonage Turner Syndrome (PTS), I have PTS and your symptoms sound very familiar to me. The pain through the elbow into the wrist especially. You might consider looking on the Brain & Nervous System Group – there is a thread there for PTS. I'm 9 months into this… have found the gabapentin helpful. I'm curious how much your taking and whether it's around the clock? When I first started taking it they had me only take it at night – then during the day I would be in excruciating pain. FINALLY I started taking all day and the overall pain is lessened. Please go read that other page if you haven't already. I will go there and make a post to your name to help you find it…
Hello CPAP Friends,
Cleaning every day, all of the components seems like the best practice to me… so far it's about a 5 minute morning task. I guess I'd rather side with OVER cleaning than not cleaning enough. I don't have a heated hose, so I submerge my whole hose in the sink daily… with soapy water… then rinse and hang. I take everything apart (remove straps, and pads), remove the mask from the frame, remove the swivel from the top of the mask) – wash all those parts with soapy water, rinse and set to dry.
I do agree that changing the distilled water container daily seems like over kill… but when I let it sit in the machine, I see condensation in the machine – I don't like that! Moist areas are a breeding ground for bacteria – so every day the distilled water is changed and the tank cleaned. I leave the machine open so it can dry out during the day. One other trick I've been using is that in the evening when I connect everything back up I let it run for a few minutes before putting it on my face. My idea was that any left over moisture in the tube, frame or mask would be evaporated. So far so good!
I'm pretty new at this too… about a month+ in. I started out with a full face mask (pillows under nose but also covered my mouth). That worked 'pretty well' but I decided to switch to the pillow style where the mouth isn't covered. I too experience what you are talking about when you open your mouth the air rushes out… very strange sensation… basically your mouth has become part of the whole pressurized system… so opening your mouth becomes a 'leak'.
I like the nasal pillows much more than the full face. Do you use the type that has the tubes that insert into your nose a bit? I haven't tried those – but I'm thinking about it. I really like the Respironics brand of masks because they allow you to switch out the mask type while keeping all the same head gear (almost all the same)… maybe other brands do that too, but it seems great for new users because you can easily try the other types of masks and find what works best for you. Also… the swivel on the top of the head works great – I have no troubles with the hose at all.
I'm a little confused about the nasal pillows pulling out when you stand up… I always take the mask off while I'm still in the bed. Not sure why you would standup while still connected? As long as the pillow isn't pulled off while your in bed I wouldn't worry about it. I do find that during the night I sometimes adjust the straps… usually just by pulling is down in the back which tightens things back up… I don't adjust the velcro – just pull the strap back down into position. I did find that my hair was making me crazy with all the straps etc. Finally decided to just pull into a short little pony tail – keeps most of it up out of the way and keeping straps tight seems to be working better!!
Hope that helps… JJ