hi
off work today having not slept a wink though I never took the FFM off - the auto could go as low as 9 but went to average 15 last night on the 90% levels - reason being I have a difficult problem to solve and I wonder if anyone has solved it?
case 1 I use nasonex - I do all the right things, dose it head down, wash out my throat with anti fungal etc, then the thrush comes and it shuts my air pipe outright, no CPAP machine can help me sleep, I'm sat here exhausted
case 2 I don't use nasonex to try and get better - sooner or later, my nose totally packs in, I'm in situation 1 again because all I have is my mouth, and my mouth is malfunctional in extreme - enormous tongue big flappy uvula. my sleep stands or falls on the health of my nose and if my throat is open, I have no problem with compliance, CPAP just doesn't work if my nose is blocked or if my throat is full of filth and fungus
situation 1, no mouth with a clear nose hitting a blocked pipe, situation 2, no nose which is a shame as it'd be feeding a clear pipe. mouth in either state? , forget mouth breathing my mouth is incapable of breathing the moment it relaxes!
seems to me a rock and a hard place constant cycle between getting infected and the good times, the thing that helps me sleep is also producing the most profound sleep apnea I experience, it is complete love/hate for me and I am worried about work plus ambitious, I do not want to be destroyed by a medication that is meant to help me, it's like heroin, you come off it and it gets you, you stay on it and it gets you... , all I can seem to do is get the thrush treated, have a few good weeks and bounce back and forth between situation 1 and 2 - in the middle it's great , right now, I'm utterly miserable
has anyone else mastered this? i.e. they can't live with or without nasonex? what do you do to stop the thrush? how do you survive the swings between the two states?
thanks in advance!
Andy
edit: also this time I turned up at the doctors and MADE him give me an antifungal- does anyone have experience of Fluconazole? does it work, and what do I do once it has got rid of this vile infection so it does not come back - even with nasonex use once nightly? I'm healthy , my immune system is good, it's just this mixed blessing nose steroid is both my salvation and my curse ! Dreading nasonex in case it does me In some more, dreading sleep, anyone would think I was not 100% compliant to this day and treated for sleep apnoea!
help! nasonex, thrush and CPAP! rock and a hard place
help! nasonex, thrush and CPAP! rock and a hard place
_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
Additional Comments: over the moon to have finally got there with therapy! |
Re: help! nasonex, thrush and CPAP! rock and a hard place
Back when I was having psoriasis diagnosed as everything but psoriasis, I went through the whole range of anti-fungals -- monistat, nystatin, fluconazole and finally ketoconazole. I can tell you that none of them do a thing for psoriasis -- but I can also tell you that after fluconazole comes ketoconazole. On which I felt super crappy.
I found this about nasonex thrush -- http://www.medhelp.org/posts/Ear--Nose- ... ow/1370572
Have you done nystatin yet? Thrush of the nose sounds like it would be similar to the thrush moms and babies get, and the standard treatment for that is nystatin ointment that mom puts on her breasts and nystatin drops that go in baby's mouth. Ask your doctor about whether you can use either the nystatin drops or ointment on your nose.
Fighting yeastie beasties can be a major challenge. The two biggest problems in general:
1) Whichever strain you are infected with is resistant to whatever you are putting on it, and the only way to deal with this is to try other things.
2) You are continuously reinfecting yourself. This could be absolutely anything from reusing handkerchiefs to contaminating the nasonex bottle to contaminating nasal pillows. Figuring that out is detective work.
It sounds like the nasonex somehow supercharges the yeast and so you've got to take the usual precautions to the maximum level.
Because I have psoriasis, I use mometasone ointment in my arsenal. (The generic name of nasonex is mometasone nasal.) Long term steroid use is really really really bad for you -- it causes PERMANENT thinning of your skin. I know elderly people who start bleeding with the slightest bump because they put steroid creams on their psoriasis for decades. It sounds like you are already getting damage from the steroid. When I use mometasone, I use it for no more than 3 days in a row, and then can not use it for the rest of the days of that week. It sounds like you are reacting to the steroids already, and you need to get away from them.
Besides plain old nystatin, there is a formulation Nystatin Triamcinolone (also called by brand names Mycogen Ii and Mytrex). The Triamcinolone is a topical steroid too. If your doc prescribes this, you should question it because of the steroid in it.
I found this about nasonex thrush -- http://www.medhelp.org/posts/Ear--Nose- ... ow/1370572
Have you done nystatin yet? Thrush of the nose sounds like it would be similar to the thrush moms and babies get, and the standard treatment for that is nystatin ointment that mom puts on her breasts and nystatin drops that go in baby's mouth. Ask your doctor about whether you can use either the nystatin drops or ointment on your nose.
Fighting yeastie beasties can be a major challenge. The two biggest problems in general:
1) Whichever strain you are infected with is resistant to whatever you are putting on it, and the only way to deal with this is to try other things.
2) You are continuously reinfecting yourself. This could be absolutely anything from reusing handkerchiefs to contaminating the nasonex bottle to contaminating nasal pillows. Figuring that out is detective work.
It sounds like the nasonex somehow supercharges the yeast and so you've got to take the usual precautions to the maximum level.
Because I have psoriasis, I use mometasone ointment in my arsenal. (The generic name of nasonex is mometasone nasal.) Long term steroid use is really really really bad for you -- it causes PERMANENT thinning of your skin. I know elderly people who start bleeding with the slightest bump because they put steroid creams on their psoriasis for decades. It sounds like you are already getting damage from the steroid. When I use mometasone, I use it for no more than 3 days in a row, and then can not use it for the rest of the days of that week. It sounds like you are reacting to the steroids already, and you need to get away from them.
Besides plain old nystatin, there is a formulation Nystatin Triamcinolone (also called by brand names Mycogen Ii and Mytrex). The Triamcinolone is a topical steroid too. If your doc prescribes this, you should question it because of the steroid in it.
Re: help! nasonex, thrush and CPAP! rock and a hard place
I'm better today than yesterday - so I found a page here.
http://foodmatters.tv/articles-1/how-to ... -naturally
and obviously this is someone not like me with no immune system, so has gone extreme on the yeast and by extreme I mean his/her entire life choices are based on fear of sugar - he/she cannot eat, or enjoy food, it is a prison of dull tasteless crap, but at least he/she is free of the dreaded bug, which I am not yet free of!
so I took the good bits with a measure of realisation that I'm very fit, and healthy, I'm not fat and I have nothing wrong with me other than OSA. my resting heart rate is sub 60, I work play and exercise HARD so I snipped it up a bit and here's what I came up with
garlic , apple vinegar, probiotics - great idea. I will follow this and see what it does. I just crushed up and ate a load of garlic, it wasn't as bad as I reckoned, I built myself up a massive AARAARRGh moment so by the time I ate it, I was more like "is that it?" nonetheless my partner will love me for it I am sure..
but the rest, although sounding very valid, sounds like you eat horrible stuff for rest of your life, eliminate sugar altogether, - I think that is way too extreme and that the difference between me and whoever wrote this very helpful page is that they have it all over them and I just want to sleep at night and unfortunately the nose stuff I use to sleep at night is turning my throat into that of a 60 a day smokers!
you never know who might read this crap and who it might help so there you go, all for now !
http://foodmatters.tv/articles-1/how-to ... -naturally
and obviously this is someone not like me with no immune system, so has gone extreme on the yeast and by extreme I mean his/her entire life choices are based on fear of sugar - he/she cannot eat, or enjoy food, it is a prison of dull tasteless crap, but at least he/she is free of the dreaded bug, which I am not yet free of!
so I took the good bits with a measure of realisation that I'm very fit, and healthy, I'm not fat and I have nothing wrong with me other than OSA. my resting heart rate is sub 60, I work play and exercise HARD so I snipped it up a bit and here's what I came up with
garlic , apple vinegar, probiotics - great idea. I will follow this and see what it does. I just crushed up and ate a load of garlic, it wasn't as bad as I reckoned, I built myself up a massive AARAARRGh moment so by the time I ate it, I was more like "is that it?" nonetheless my partner will love me for it I am sure..
but the rest, although sounding very valid, sounds like you eat horrible stuff for rest of your life, eliminate sugar altogether, - I think that is way too extreme and that the difference between me and whoever wrote this very helpful page is that they have it all over them and I just want to sleep at night and unfortunately the nose stuff I use to sleep at night is turning my throat into that of a 60 a day smokers!
you never know who might read this crap and who it might help so there you go, all for now !
_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
Additional Comments: over the moon to have finally got there with therapy! |
Re: help! nasonex, thrush and CPAP! rock and a hard place
Coconut oil contains lauric acid which is converted into monolaurin, a potent antifungal, antiviral, anti-other-stuff too. I've read of some alternative thrush treatment where you let 1 tablespoon of the organic variety of coconut oil melt and coat your throat to kill the beasties. Can do this several times a day. Beta glucans got rid of a deep-seated jaw infection that I battled for 16-18 months with poor results using modern medical nostrums. Took 2 capsules 3 times/day like an antibiotic for at least several weeks, more like months if memory serves. Monolaurin comes in pill form but I bet the natural form has chemical side groups that promote more effectiveness.
Nasal steroids are a mixed blessing. Used too long, they thin tissue...seems to be an individual tolerance sort of thing. I have chronic, life-long nasal issues, Saline is my first choice to reduce congestion. I also use a Xylitol-based nasal spray (Xclear) that starves the beasties that live in the nose and sinuses; I use it when my congestion flares up.
I wear the Innomed/RespCare Universal Hybrid mask so I can breathe through my nose or mouth without losing therapy air...might check it out.
Yeast loves sugar, so might reduce as much as possible until the thrush is gone. Artificial sweeteners might be helpful.
Nasal steroids are a mixed blessing. Used too long, they thin tissue...seems to be an individual tolerance sort of thing. I have chronic, life-long nasal issues, Saline is my first choice to reduce congestion. I also use a Xylitol-based nasal spray (Xclear) that starves the beasties that live in the nose and sinuses; I use it when my congestion flares up.
I wear the Innomed/RespCare Universal Hybrid mask so I can breathe through my nose or mouth without losing therapy air...might check it out.
Yeast loves sugar, so might reduce as much as possible until the thrush is gone. Artificial sweeteners might be helpful.
_________________
Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear |
Humidifier: HumidAire H4i™ Heated Humidifier |
Additional Comments: Started Aug '07 CPAP Escape at 11 then 9, S9 APAP range 9.8-16, now 10-17 |
ResMed S9 range 9.8-17, RespCare Hybrid FFM
Never, never, never, never say never.
Never, never, never, never say never.
Re: help! nasonex, thrush and CPAP! rock and a hard place
thank you muse -yes I've read a lot of this and what you say makes a lot of sense.
I think nasonex is very mixed blessing, at the moment it's 51/49 for rather than against, if it does me in one more time I might take myself off it and look into daily netti pots instead, something like that, plus all of the below!
best regards
Andy
I think nasonex is very mixed blessing, at the moment it's 51/49 for rather than against, if it does me in one more time I might take myself off it and look into daily netti pots instead, something like that, plus all of the below!
best regards
Andy
_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
Additional Comments: over the moon to have finally got there with therapy! |
Re: help! nasonex, thrush and CPAP! rock and a hard place
I wonder if an Oracle oral mask would work for you. You put a mouthpiece sort of like a SCUBA mouthpiece in your mouth and breathe through that. Maybe it would hold your mouth in the right position somehow. Maybe Winx or a tongue stabilization device would help.
I always seem to keep mentioning the Oracle mask. I don't really like it, but it's enough different from a normal FFM or nasal mask that it's worth a try for people with certain problems with more "normal" masks.
I always seem to keep mentioning the Oracle mask. I don't really like it, but it's enough different from a normal FFM or nasal mask that it's worth a try for people with certain problems with more "normal" masks.
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Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
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Additional Comments: Also SleepyHead, PRS1 Auto, Respironics Auto M series, Legacy Auto, and Legacy Plus |
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Click here for information on the most common alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check for yourself.
Useful Links.
Re: help! nasonex, thrush and CPAP! rock and a hard place
Thanks - I've looked into all of that - there's some exciting new stuff coming out.
winx in particular looks innovative but it also relies on nose breathing- which is where I am at with CPAP at the moment. IF my nose works CPAP works, if it doesn't CPAP doesn't. Ideally there'd be a device out there that would render my mouth useful while also allowing CPAP pressure to get into my mouth if my nose didn't work. Increasingly I am wondering if this is in fact BIPAP. many times when I am falling asleep I hear the airway closing and then popping open again due to the CPAP. What is happening is the CPAP pressure is flattening my uvula against my tongue which is closing my mouth outright as the CPAP also dries out my mouth allowing them to stick better. So then the clack sound comes when I breathe out again- what is happening then is I'm forcing the two stuck together tissues to separate again by breathing out against the CPAP.
If I ever find the money I'd like to try an oracle because of this complete misunderstanding between mouth and nose., how much are they and where can I get them from?
I like the other stuff too but some of it looks to be either /or for CPAP. With what CPAP has done for me I'm keen to keep that as part of my therapy. I think with me it'd be more MMA advancement that moved the tongue out of harmful range. Seeing as I can't organise that, I think CPAP is the sensible go to solution until I can find a better way, which isn't yet
all the best
winx in particular looks innovative but it also relies on nose breathing- which is where I am at with CPAP at the moment. IF my nose works CPAP works, if it doesn't CPAP doesn't. Ideally there'd be a device out there that would render my mouth useful while also allowing CPAP pressure to get into my mouth if my nose didn't work. Increasingly I am wondering if this is in fact BIPAP. many times when I am falling asleep I hear the airway closing and then popping open again due to the CPAP. What is happening is the CPAP pressure is flattening my uvula against my tongue which is closing my mouth outright as the CPAP also dries out my mouth allowing them to stick better. So then the clack sound comes when I breathe out again- what is happening then is I'm forcing the two stuck together tissues to separate again by breathing out against the CPAP.
If I ever find the money I'd like to try an oracle because of this complete misunderstanding between mouth and nose., how much are they and where can I get them from?
I like the other stuff too but some of it looks to be either /or for CPAP. With what CPAP has done for me I'm keen to keep that as part of my therapy. I think with me it'd be more MMA advancement that moved the tongue out of harmful range. Seeing as I can't organise that, I think CPAP is the sensible go to solution until I can find a better way, which isn't yet
all the best
_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
Additional Comments: over the moon to have finally got there with therapy! |
- chunkyfrog
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Re: help! nasonex, thrush and CPAP! rock and a hard place
Funny, DH and I gave ourselves thrush from heavily garlicky garlic bread.
The garlic killed off the oral bacteria--mostly mine, (garlic was an early antibiotic--"Russian penicillin").
Mine was worse--the doc rx'd the nastiest, grainy ineffectve lozenges.
Since hubby had recovered, I chewed his used Freedent to re-inoculate my mouth with the flora we both shared.
And it worked--the doc was like, "Eew, but that's true love"
The garlic killed off the oral bacteria--mostly mine, (garlic was an early antibiotic--"Russian penicillin").
Mine was worse--the doc rx'd the nastiest, grainy ineffectve lozenges.
Since hubby had recovered, I chewed his used Freedent to re-inoculate my mouth with the flora we both shared.
And it worked--the doc was like, "Eew, but that's true love"
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Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Airsense 10 Autoset for Her |