Hi, I'm a new user and heres as much about me that relates to my apnea as I can think of.( I don't know a whole heck of alot about it so bear with me)
I've been diagnosed with sleep apnea now for about a year and a half. I'm 29 and I'm a really big guy. 6' 8" and 460lbs. I'm from Toronto, Canada.
I have a really great understanding women in my life that has supported me through all the bad times that I've been through with apnea. If it wasn't for her I would have checked out a while ago and thats just being realistic - Apnea Sucks and nobody that doesnt have it understands it.
I was diagnosed at the Toronto East General Sleep Clinic. They determined that I was at a very high level with occurences of apnea happening every 7 minutes and I never achieved regular sleep.
The Sleep specialist there prescribed a cpap machine at a prescription of level 16 (whatever that means?) He directed me to a cpap medical supply pimping company out of north york that I had bad service from - When getting your gear remember to shop around!!! Make sure they know more about the gear they are selling you than you do (and I'd just walked through the door and had sleep deprevation LOL)
I am currently using REMSTAR CPAP machine and a respaironics mask that goes over my nose and mouth.
This is my third mask, I've had a hell of a time with them. my first one was a nose only respaironics wich was no good for me cause i kept opening my mouth.
Then I got The Oracle from fisher & PayKel wich I got from https://www.cpap.com
I couldn't use this one either because I couldn't breath properly with it and snot would fly out my shnozz
The mask I have now leaks like crazy and I get pink eye from it. I want to get a full face mask but I'd like know if any of you use them to know which to get before I waste anymore money.
All these masks are poorly built pieces of crap. I wish a good tool company would make them - I've been tempted to make my own
I've had two older brothers commit suicide. in one of the cases was nearly directly related to apnea. my brother had been diagnosed a week before. His life started falling apart at around 25. Didn't know it. got treated and midiagnosed for depression. lost the job. lost the wife. ran out of money and got diagnosed with apnea a couple months before he took his life with a note pointing to a letter from welfare canada saying that apnea was not recognised under canadas disability act. they made him jump through so many hoops for months and that was there final answer - Fuckers. I didn't understand what rough shape he was in until i developed it a year after his death when I developed it myself along with a huge stress breakdown, It was awesome.
I did the whole depression medication thing for a year from doctors that told me to do things like eat some chocolate to release seratonin (I think she had been reading a lil Harry Potter) Quack - quack - quack Anyways, I finaly got myself hooked up with the sleep clinic and I'm now recovering
I had a great carrer as an audio\ lighting\staging tech for a major entertainment company and also sub-contracted for some small film and video studios, made great money, played bass in a fun punk rock band and got to tour around canada (would have been going to austrailia this year) but I got SICK and FUCKED IT ALL UP. I can now barely cope with any stress and I havn't really worked in over a year with no income.I've been doing odd audio recording and web stuff for peaple but thats about it.If it wasn't for my wonderful girl I'd be skidrow and I'd have never gotten any help in the first place cause I couldn't handel it. I couldn't even think straight.
I take it day by day now. If my mask slips in the night i'm pretty much screwed the next day or two. I'll want to get my life back together. just takes time.
I'm sick of typing now more later - thanks
Hi!!!!
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Clownshow, you said it all so well. Very sorry about your brothers... and for what you've been through. As you said, you're lucky to have that lady in your life, staying by you while you work out what you need to do.
You mentioned your pressure is 16, and that you are using a Respironics cpap. I'm not a doctor, but if there's any way you can get that machine swapped for a Respironics Remstar Autopap with C-flex, I think you'd find the treatment to be a whole lot more comfortable. Autopap lets you set a range of pressures - in your case, perhaps set it for a range of 12 - 18 to encompass the prescribed "16". It might be that you don't really need the full "16" all night long. Would be more comfortable if you could spend a good part of your night down at lower pressures. Also, with lower pressures, there is less chance of mask leaks and aerophagia (swallowing air which can cause painful bloating.)
And here's the real beauty of an autopap as opposed to a straight "one pressure all the time" plain cpap. The autopap will be reading your breathing minute by minute all night, and will automatically adjust to whatever pressure is actually needed. With an autopap, you don't have to worry, "Is the single pressure they found for me in the sleep study really what I should have? Is that pressure still right for me, months or a year later?" With an autopap it's like having a mini sleep study every night - the machine finding the varying pressures you actually need. Adjusting to what you need, continuously through the night - night after night, month after month.
C-flex is a super comfortable feature in the particular autopap I mentioned above - and it's the only autopap that has this. No matter what varying pressure that particular autopap happens to be using for you, C-Flex will quickly and smoothly lower that pressure when you exhale and then move smoothly back up to the pressure you need when you inhale again. With C-flex, you don't have to work anywhere near as hard breathing out against incoming air flow.
Respironics REMstar Auto with C-Flex and heated humidifier - the best of both worlds, as far as I'm concerned. Only as much pressure as I need, when I need it, and smooth relief from the pressure every time I exhale. There are other excellent autopaps out there, but because this one is the only autopap with the added feature of "C-Flex" for easing off the pressure during every exhalation, it's my personal favorite autopap now.
If you really want to have more control over your own treatment, I'd also suggest getting the Encore Pro software/card reader so you can see for yourself, on your own computer, how your nightly treatments are going.
The other thing I would suggest is to try these masks:
Activa ("nasal" mask - covers the nose)
The design of the Activa's cushion is totally different from any other mask. Much more comfortable and leakproof for most people, and it works best with the straps amazingly loose - almost floppy loose. This really is the cadillac of nasal masks, imho.
Breeze (nasal pillows) - great for side sleepers, ok for back sleepers. This one is my personal favorite of all masks. I'd suggest getting nasal pillows that are a size larger than you'd think would be right for you so that the pillows will sit more outside the nose - sealing nicely against the front of the nose without having to be crammed up into the nostrils.
Swift (nasal pillows) - great for back sleepers, ok for side sleepers. The Swift is also extra nice for people who want nothing in front of their eyes. Comes with all three sizes of nasal pillows - the pillows are built into the cylinder that sits under the nostrils.
A good "extra" mask for everyone to have in their arsenal is ResMed's Ultra Mirage FF (full face) mask. Despite the name full face, it covers only the nose and mouth - not the entire face. A FF mask is great to have on hand for nights when you have a cold, or any time your nose is congested or stuffy with allergies or sinus problems. A full face mask allows easy breathing through either the nose or mouth. A FF mask is also a good choice for people who can breathe through the nose fine, but who have problems with treatment air leaking out the mouth.
Good luck with your continued treatment, Clownshow. Some people get fairly instant results, but others find it takes a lot longer. It really can be made a lot more comfortable. Making it comfortable is the key to sticking with it, especially if a person is not seeing big improvements right away.
You mentioned your pressure is 16, and that you are using a Respironics cpap. I'm not a doctor, but if there's any way you can get that machine swapped for a Respironics Remstar Autopap with C-flex, I think you'd find the treatment to be a whole lot more comfortable. Autopap lets you set a range of pressures - in your case, perhaps set it for a range of 12 - 18 to encompass the prescribed "16". It might be that you don't really need the full "16" all night long. Would be more comfortable if you could spend a good part of your night down at lower pressures. Also, with lower pressures, there is less chance of mask leaks and aerophagia (swallowing air which can cause painful bloating.)
And here's the real beauty of an autopap as opposed to a straight "one pressure all the time" plain cpap. The autopap will be reading your breathing minute by minute all night, and will automatically adjust to whatever pressure is actually needed. With an autopap, you don't have to worry, "Is the single pressure they found for me in the sleep study really what I should have? Is that pressure still right for me, months or a year later?" With an autopap it's like having a mini sleep study every night - the machine finding the varying pressures you actually need. Adjusting to what you need, continuously through the night - night after night, month after month.
C-flex is a super comfortable feature in the particular autopap I mentioned above - and it's the only autopap that has this. No matter what varying pressure that particular autopap happens to be using for you, C-Flex will quickly and smoothly lower that pressure when you exhale and then move smoothly back up to the pressure you need when you inhale again. With C-flex, you don't have to work anywhere near as hard breathing out against incoming air flow.
Respironics REMstar Auto with C-Flex and heated humidifier - the best of both worlds, as far as I'm concerned. Only as much pressure as I need, when I need it, and smooth relief from the pressure every time I exhale. There are other excellent autopaps out there, but because this one is the only autopap with the added feature of "C-Flex" for easing off the pressure during every exhalation, it's my personal favorite autopap now.
If you really want to have more control over your own treatment, I'd also suggest getting the Encore Pro software/card reader so you can see for yourself, on your own computer, how your nightly treatments are going.
The other thing I would suggest is to try these masks:
Activa ("nasal" mask - covers the nose)
The design of the Activa's cushion is totally different from any other mask. Much more comfortable and leakproof for most people, and it works best with the straps amazingly loose - almost floppy loose. This really is the cadillac of nasal masks, imho.
Breeze (nasal pillows) - great for side sleepers, ok for back sleepers. This one is my personal favorite of all masks. I'd suggest getting nasal pillows that are a size larger than you'd think would be right for you so that the pillows will sit more outside the nose - sealing nicely against the front of the nose without having to be crammed up into the nostrils.
Swift (nasal pillows) - great for back sleepers, ok for side sleepers. The Swift is also extra nice for people who want nothing in front of their eyes. Comes with all three sizes of nasal pillows - the pillows are built into the cylinder that sits under the nostrils.
A good "extra" mask for everyone to have in their arsenal is ResMed's Ultra Mirage FF (full face) mask. Despite the name full face, it covers only the nose and mouth - not the entire face. A FF mask is great to have on hand for nights when you have a cold, or any time your nose is congested or stuffy with allergies or sinus problems. A full face mask allows easy breathing through either the nose or mouth. A FF mask is also a good choice for people who can breathe through the nose fine, but who have problems with treatment air leaking out the mouth.
Good luck with your continued treatment, Clownshow. Some people get fairly instant results, but others find it takes a lot longer. It really can be made a lot more comfortable. Making it comfortable is the key to sticking with it, especially if a person is not seeing big improvements right away.
When I went to buy my machine i had asked for the auto-cpap but the cpap reseller only had the regular remstar in stock, the twit sales lady reasured me that this was all i needed - I have nothing good to say about the fist cpap dealer company I dealt with
since then I've dealt with https://www.cpap.com = Great Company
since then I've dealt with https://www.cpap.com = Great Company
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jean19540_0
- Posts: 74
- Joined: Fri Jan 07, 2005 2:17 pm
- Location: nottingham uk
re; face masks!
hello there,
i'm glad you've got a supportive partner, thats vital, otherwise who knows. i have also had problems with masks. the first a nasal, like you i opened my mouth when falling asleep. the second a fisher&paykel flexi-fit HC431. THIS MASK WAS BASICALLY COMFI, BUT IT WAS MARKING MY FACE & NOSE BRIDGE TO THE POINT OF BLEEDING.(sorry about the caps) they then put a new liner, slightly bigger on the same mask. SPOT ON
the technition told me the mask is extremly popular & no wonder.
all the best, jean
i'm glad you've got a supportive partner, thats vital, otherwise who knows. i have also had problems with masks. the first a nasal, like you i opened my mouth when falling asleep. the second a fisher&paykel flexi-fit HC431. THIS MASK WAS BASICALLY COMFI, BUT IT WAS MARKING MY FACE & NOSE BRIDGE TO THE POINT OF BLEEDING.(sorry about the caps) they then put a new liner, slightly bigger on the same mask. SPOT ON
the technition told me the mask is extremly popular & no wonder.
all the best, jean
you know, I havn't really talked to anybody with apnea. Did all of you get totally screwed up from it too?
I've had a really hard time. did you guys ever have your hands and feet thicken up and start peeling? I thought it was from the work I did and workboots. about six months after I was on the machine strips of skin an 1/8th of an inch thick where coming off the soles of my feet.(I could walk on broken glass my feet where so thick) It was very disturbing. My feet are all smooth and happy now.
Another thing that happened to me was veins in my legs swelled all up and look like uderstuffed sausages. I went out and played paintball with some freinds and got hit in the kneecap and it swelled and bruised for a long long time.
Small cuts wouldn't heal and my body started rejecting colours out of my tattoos (Red and orange) and then scarred up where it happened.
Plus that tired feeling like you've got sandbags ontop of you which makes everything suck. I got really bitter and crusty and was unreasonable about common everyday things
I believe I have large memory loss from it too and maybe even some braindamage -I don't even know if that is associated with it, I havn't got to dealing with that part of it with the doctors yet, Oh yeah I procrastinate alot more now too LOL
I couldn't even have a conversations with peaple
what about ya'll same things?
I've had a really hard time. did you guys ever have your hands and feet thicken up and start peeling? I thought it was from the work I did and workboots. about six months after I was on the machine strips of skin an 1/8th of an inch thick where coming off the soles of my feet.(I could walk on broken glass my feet where so thick) It was very disturbing. My feet are all smooth and happy now.
Another thing that happened to me was veins in my legs swelled all up and look like uderstuffed sausages. I went out and played paintball with some freinds and got hit in the kneecap and it swelled and bruised for a long long time.
Small cuts wouldn't heal and my body started rejecting colours out of my tattoos (Red and orange) and then scarred up where it happened.
Plus that tired feeling like you've got sandbags ontop of you which makes everything suck. I got really bitter and crusty and was unreasonable about common everyday things
I believe I have large memory loss from it too and maybe even some braindamage -I don't even know if that is associated with it, I havn't got to dealing with that part of it with the doctors yet, Oh yeah I procrastinate alot more now too LOL
I couldn't even have a conversations with peaple
what about ya'll same things?
Oh yeah. 2004 was the worst year of my life. That was when my sleep apnea took a noticable downturn and before it had been diagnosed. It's a total miracle that I actually managed to keep on going to work every day and keep my job. So tired all the time, and absolutely no emotional resources -- small things that wouldn't have bothered a normally rested person would cause me to burst into tears. There were days I really wished I could just end it all, because then this hellishness would just be over, once and for all. But my family and biblestudy group were really supportive, I couldn't have managed without them.Clownshow wrote:you know, I havn't really talked to anybody with apnea. Did all of you get totally screwed up from it too?
....
Plus that tired feeling like you've got sandbags ontop of you which makes everything suck. I got really bitter and crusty and was unreasonable about common everyday things
Regarding the nose-versus-mouth mask, I know when I was buying my mask I wanted to get a full-face mask because I'd had so much trouble on my calibration sleep-study in keeping my mouth shut, but my CPAP technician persuaded me that all I needed was a nose mask, and that buying a chin strap was a waste of money -- I could tie a stocking around my head if I was worried. So I did that, and I'm glad I did, because he was right, I did manage to get used to it and breathe through my nose all night long.
I use a RedMed Mirage Activa nose mask, with a Shallow attachment, because I'm a woman and have a smaller face. But it was by far the most comfortable mask of the ones I tried.
The best cure for insomnia is to get a lot of sleep. (W. C. Fields)
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jean19540_0
- Posts: 74
- Joined: Fri Jan 07, 2005 2:17 pm
- Location: nottingham uk
touchy, just a bit!
hello there,
just a little bit touchy, im new to it yet 21 days & counting im told by the doctors it takes time, but im glad i started treatment, at least now i know the only way is up cant wait to get to full benifit but i must be patient, as someone said, you have to pay back your sleep debt emotional, nasty, forgetfull, confusion, lack of consontraion, high blood pressure (which i had before sleep apnia & being treated), all this and much much more im waiting for the thoughally refreshed jean
your not alone, and very often sitting at the keyboard, i keep hitting the wrong button, or the same button twice, but i know things are very slowly starting to improve wishing you all good luck on this one jean
Another problem that I am trying to address now is a really screwed up sleeping scheduale.
I'm awake at night and sleeping during the day and I only sleep for about 4-5 hours.
Plus when I get tired I have no choice but to have a sleep. It's like my body shuts down and I almost have to run to bed to get to sleep.
My G/F really dislikes this. and I don't blame her. She likes me cuddling her and misses me if i'm not in bed. We just had to spend a week in a hotel room because of frozen sewage lines at our house (we're in the Arctic right now.) and I was driving her nuts because i was up in the night and I was wrecking her sleep.
I've taken to trying to sleep at our regular bedtime but i'm up at around 4:00am all bright eyed and bushy tailed
I'm awake at night and sleeping during the day and I only sleep for about 4-5 hours.
Plus when I get tired I have no choice but to have a sleep. It's like my body shuts down and I almost have to run to bed to get to sleep.
My G/F really dislikes this. and I don't blame her. She likes me cuddling her and misses me if i'm not in bed. We just had to spend a week in a hotel room because of frozen sewage lines at our house (we're in the Arctic right now.) and I was driving her nuts because i was up in the night and I was wrecking her sleep.
I've taken to trying to sleep at our regular bedtime but i'm up at around 4:00am all bright eyed and bushy tailed
Language of Guest
Guest,must we use that language?Let's all keep this clean please.
Am I a prude?
I too only sleep for 3 1/2 to 4 hours.I seem to be doing a lot better than a lot of the people I see on this site.I have a lot to be thankful for.
Am I a prude?
I too only sleep for 3 1/2 to 4 hours.I seem to be doing a lot better than a lot of the people I see on this site.I have a lot to be thankful for.
Last edited by Marie on Fri Jan 21, 2005 7:27 am, edited 1 time in total.
Hi!!! I'm new at to this sight to. I'm so so sorry that you had to go through such a terrible ordeal take comfort that you'r not alone I'm crying because I thought I was. I lost my job some friends and have been through every damn antidepresent since I was eighteen. That makes you feel like a loser and a half!! I live Indiana and was put on Social Security when I was 23 what didn't they diagnose me with!!! I got my machine 10 months ago and now grieve at the years I lost. I'm a new person now but lost what to do and how do you start over. Trudie
Trudie - you are your true self right now. Those friends you lost...they wern't your friends.It's easy to live in the past but all that crap is behind you now. Live for the moment, do not dwell in the past and enjoy the true beauty that can be found in everything. It's sometimes hard to open your eyes to these things but they are right infront of you, now. Get outside and LIVETrudie wrote:Hi!!! I'm new at to this sight to. I'm so so sorry that you had to go through such a terrible ordeal take comfort that you'r not alone I'm crying because I thought I was. I lost my job some friends and have been through every damn antidepresent since I was eighteen. That makes you feel like a loser and a half!! I live Indiana and was put on Social Security when I was 23 what didn't they diagnose me with!!! I got my machine 10 months ago and now grieve at the years I lost. I'm a new person now but lost what to do and how do you start over. Trudie
"Fill yourself with beauty and you'll laugh at all the ugliness in the world"
Pic - Off the back porch, Fobisher Bay.Iqaluit, Nunavut