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Extreme Dry Mouth & Throat

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Extreme Dry Mouth & Throat

Postby Resty » Sun Jun 17, 2012 8:30 pm

I currently use a BiPap with O2 bled in and a cold air humidifier. Ive been doing this for a year now (Actually a year yesterday) Ive had no trouble adjusting to any of it. I sleep better....not longer but some better.

Earlier this year I was diagnosed with what my dream team called "Advanced Sjogrens". I realize the mouth dryness involved with this.

However what Im experiencing seems so much worse than either or of the above.

I will actually wake in the night with my tongue seemingly glued to the roof of my mouth and my throat so incredibly dry it hurts to swallow. It takes me numerous times to even garner enough saliva TO SWALLOW. The pain is literally very extreme.

I cant figure out what the cause is or how to battle it. The only time this bothers is at night. Im lost as to what to do or how to treat it.

Any suggestions would be welcome.

~Resty™
~Instead of waiting for your storm to pass why not learn to dance in the rain?

PR Pro One BiPAP w/Auto bi-flex (13/8)
O2 w/cold air humidifer
Mirage Quattro full face mask (sm)
Phillips Ever Flo-Q Ultra Quiet Stationary O2 Concentrator (2LPM)
User avatar
Resty
 
Posts: 115
Joined: Thu May 26, 2011 4:30 pm
Location: Madison, WI
Machine: PR Pro One Auto BiPap w/auto flex
Mask: Mirage Quatrro (sm), Quatrro FX
Humidifier: Yes, cold air, F&P
Year Diagnosed: 2011

Re: Extreme Dry Mouth & Throat

Postby greatunclebill » Sun Jun 17, 2012 9:31 pm

i get pretty dry too and just sorta live with it. i've tried heated humidity at all the levels and pass over humidity like yours. none of it really helps. about the only thing you can do is order a heated humidifier. i'm currently using my heated humidifier on the lowest setting. anything above that seems to be too much and too warm humidity for me
greatunclebill
 
Posts: 426
Joined: Sat Feb 25, 2012 11:12 am
Location: L.A. (Lower Alabama)
Machine: RP sys one auto w/a-flex model 550P
Mask: quattro fx full face
Humidifier: yes sys one
Year Diagnosed: 1990

Re: Extreme Dry Mouth & Throat

Postby Resty » Mon Jun 18, 2012 6:01 pm

Thanks for the response Uncle Bill. I do appreciate it.

This condition is so ungodly painful. Its difficult but I can sorta deal with the whole thing of being so dry during the night though this does affect my sleep. It gets so painful that I wake up and struggle to go back to sleep. The pain is so deep in my throat...its not like have "just a sore throat"..........oh heIIIIIIIIIII no its way beyond that.

Ive mentioned before somewhere that accompanying this is an incredibly sore tongue. Its not thrush....there is no white/yellow in my mouth or on my tongue. The surface of my tongue hurts ALL the time....eating, drinking anything hot or cold. ANY type of food will irritate it, soups, croutons, ice creams, salads, eggs, potatoes, bread, toast, meat, vegies etc. Ive actually been losing weight because there is so much I either cant or wont eat now because of the pain. My tongue is almost always bright red..not flesh colored or even pink. I talk with a lisp from time to time and tend to hold saliva in my mouth to kind of coat my tongue because it hurts so bad. Other times I tend so kinda spit when I talk for the same reason. And still other times I will repeatedly bite the tip of my tongue because it seems "in the way"......as if it's swollen or something.

I know it may have nothing to do with my diagnosis of SDB / UARS / SA....I know it may not have anything to do with the BiPap / O2 / Cold humidifer (which I add distilled ice water or ice cubes to). BUT....the sore mouth tongue throat dry thing ALL started just after I started treatment....right along with the swelling in my legs and feet.

I see a wonderful dream team of doctors all with their own specialty so it's not like Im guessing at this stuff or not being treated. Im just not getting good answers on this and it's puzzling at the least and extremely painful to boot.

I appreciate any and all responses

~Restlessly™
~Instead of waiting for your storm to pass why not learn to dance in the rain?

PR Pro One BiPAP w/Auto bi-flex (13/8)
O2 w/cold air humidifer
Mirage Quattro full face mask (sm)
Phillips Ever Flo-Q Ultra Quiet Stationary O2 Concentrator (2LPM)
User avatar
Resty
 
Posts: 115
Joined: Thu May 26, 2011 4:30 pm
Location: Madison, WI
Machine: PR Pro One Auto BiPap w/auto flex
Mask: Mirage Quatrro (sm), Quatrro FX
Humidifier: Yes, cold air, F&P
Year Diagnosed: 2011

Re: Extreme Dry Mouth & Throat

Postby Laura3 » Wed Jun 20, 2012 11:47 pm

Hi Resty,

I did a search for "sore tongue" and "CPAP" on google and it seems a number of people suffer from a sore tongue, which is because they are mouth breathers. I wonder if you tried using a chinstrap to keep your mouth shut if this would help. I don't know if this is possible with your mask, though, but it would be worth looking into, I would think.
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Year Diagnosed: 2011

Re: Extreme Dry Mouth & Throat

Postby Raxx » Fri Jun 22, 2012 3:27 am

I just finished a sleep study and am all excited at how well rested I felt the next day after being on the CPAP machine. The Very next day I woke with a sore and swollen throat and a bit of a runny nose. I was warned by the tech that my throat might feel sore, but I just thought they meant dryish. It's like I got a sore throat from a bug.
Is this normal and will it go away if I am put on the CPAP every night?
If not, what is the best way to deal/treat these side effects?

Thanks in advance for any responses.

Raxx
Raxx
 
Posts: 45
Joined: Fri Jun 22, 2012 3:18 am
Machine: PR Remstar Pro ds 460
Mask: Resmed Mirage Quattro
Humidifier: yes, system one
Year Diagnosed: 2012

Re: Extreme Dry Mouth & Throat

Postby Resty » Fri Jun 22, 2012 4:03 am

Im not a mouth breather.
~Instead of waiting for your storm to pass why not learn to dance in the rain?

PR Pro One BiPAP w/Auto bi-flex (13/8)
O2 w/cold air humidifer
Mirage Quattro full face mask (sm)
Phillips Ever Flo-Q Ultra Quiet Stationary O2 Concentrator (2LPM)
User avatar
Resty
 
Posts: 115
Joined: Thu May 26, 2011 4:30 pm
Location: Madison, WI
Machine: PR Pro One Auto BiPap w/auto flex
Mask: Mirage Quatrro (sm), Quatrro FX
Humidifier: Yes, cold air, F&P
Year Diagnosed: 2011

Re: Extreme Dry Mouth & Throat

Postby greatunclebill » Fri Jun 22, 2012 9:56 am

i breathe thru my mouth with my full face mask. if you use a full face mask there's nothing wrong with breathing thru your mouth which would cause the dry mouth. if you saying you're not a mouth breather you are saying you don't breathe thru your mouth at night, i don't see how you can know how you are breathing every minute of every night because you are sleeping. if you are breathing thru your nose when you go to sleep and when you wake up, it does not mean you breathed thru your nose most of the night. my bet is you are breathing thru your mouth and the mask is leaking. is there any software that works with your machine? if so do you use it? do you have any way of monitoring your leaks? if so, what are your leak numbers?

also where specifically is your o2 line hooked into your system? how is it hooked up?
greatunclebill
 
Posts: 426
Joined: Sat Feb 25, 2012 11:12 am
Location: L.A. (Lower Alabama)
Machine: RP sys one auto w/a-flex model 550P
Mask: quattro fx full face
Humidifier: yes sys one
Year Diagnosed: 1990

Re: Extreme Dry Mouth & Throat

Postby Raxx » Fri Jun 22, 2012 1:53 pm

I am a mouth breather and used a full mask. I also live in Las Vegas where it is very dry.

I do not have a CPAP machine yet as these side effects occured after my sleep study with one. In every other way it was a success. When I go to get one, should I consider a heated one? Do they make that and would it help?

Thanks- Raxx
Raxx
 
Posts: 45
Joined: Fri Jun 22, 2012 3:18 am
Machine: PR Remstar Pro ds 460
Mask: Resmed Mirage Quattro
Humidifier: yes, system one
Year Diagnosed: 2012

Re: Extreme Dry Mouth & Throat

Postby greatunclebill » Fri Jun 22, 2012 8:24 pm

you should insist on a heated humidifier. make sure the doc writes it on the prescription. cpap's are normally billed as a 13 month rental, after which it becomes yours. the heated humidifier normally is normally billed seperately just like the mask and headgear. i said normally in both cases as some insurances are different.
greatunclebill
 
Posts: 426
Joined: Sat Feb 25, 2012 11:12 am
Location: L.A. (Lower Alabama)
Machine: RP sys one auto w/a-flex model 550P
Mask: quattro fx full face
Humidifier: yes sys one
Year Diagnosed: 1990

Re: Extreme Dry Mouth & Throat

Postby Resty » Fri Jun 22, 2012 9:14 pm

The last time I had the machine checked the Leak rate was zero as Ive stated before. I am still 100% compliant. I do not sleep without the BiPap---EVER. My AHI was way over 100 when I was diagnosed with this UARS / SDB.....now it's 0.1

CA = 0.2
OA = 0.0
H = 0.1
FL = 0.0
VA = 0.9
RE = 0.3

Im not saying I never breathe thru my mouth but it's seldom or so the fiance
tells me. Usually once I start breathing thru my mouth I wake up, readjust the mask and go right back to sleep.

The O2 is bled in on top of the humidifier itself...which sits next to the BiPap. I add distilled ice cubes or water to the humidifier every night. This whole dry sore mouth /tongue / and throat blew all out of proportion when I was diagnosed with advanced Sjogrens earlier this year.
~Instead of waiting for your storm to pass why not learn to dance in the rain?

PR Pro One BiPAP w/Auto bi-flex (13/8)
O2 w/cold air humidifer
Mirage Quattro full face mask (sm)
Phillips Ever Flo-Q Ultra Quiet Stationary O2 Concentrator (2LPM)
User avatar
Resty
 
Posts: 115
Joined: Thu May 26, 2011 4:30 pm
Location: Madison, WI
Machine: PR Pro One Auto BiPap w/auto flex
Mask: Mirage Quatrro (sm), Quatrro FX
Humidifier: Yes, cold air, F&P
Year Diagnosed: 2011

Re: Extreme Dry Mouth & Throat

Postby greatunclebill » Fri Jun 22, 2012 9:37 pm

your profile indicates a full face mask. are you using a full face mask that covers your mouth and nose? if so, what does readjusting the mask have to do with not mouth breathing? i don't get that. why would you put ice cubes in the humidifier? most people want the opposite, a little heat in the water. heated water equals more humidity. colder water equals less humidity than warm water. a heated humidifier would probably help. the correct sys one heated humidifier is $129 on line. is your cold water humidifier hooked into the air hose coming from the sys one machine? some silly questions, but just trying to picture what you have.
greatunclebill
 
Posts: 426
Joined: Sat Feb 25, 2012 11:12 am
Location: L.A. (Lower Alabama)
Machine: RP sys one auto w/a-flex model 550P
Mask: quattro fx full face
Humidifier: yes sys one
Year Diagnosed: 1990

Re: Extreme Dry Mouth & Throat

Postby Resty » Sat Jun 23, 2012 7:28 am

Re: Extreme Dry Mouth & Throat

Unread postby greatunclebill » Fri Jun 22, 2012 8:37 pm
your profile indicates a full face mask. are you using a full face mask that covers your mouth and nose? if so, what does readjusting the mask have to do with not mouth breathing? i don't get that. why would you put ice cubes in the humidifier? most people want the opposite, a little heat in the water. heated water equals more humidity. colder water equals less humidity than warm water. a heated humidifier would probably help. the correct sys one heated humidifier is $129 on line. is your cold water humidifier hooked into the air hose coming from the sys one machine? some silly questions, but just trying to picture what you have.
Retired USAF MSgt (E-7) 1968-1990

XXXXXXXXXXXXXX

I use a full mask that covers nose and mouth. I have the Quattro Mirage and the Quattro FX. I do readjust the mask if I feel it move for whatever reason (sometimes the head gear will slip because of my long hair and that causes the mask to move too high or too low) I seem to sense when I start breathing through my mouth and do "stir" and reach up to the mask and move it a little. Fortunately it doesnt happen a lot.

I use the cold air ice/cold water thing because I have horrendous trouble breathing warm air. Even during the day I have to pay ultra close attention to heat and humidity. I cant handle it at all. I have major trouble breathing when the temps get any higher than 70-75....and if the humidity gets elevated I have to stay inside with AC running. Its pretty terrifying to struggle to breathe just walking to my car after work, or to go shopping in the summer if it's "hot and humid" out. Even IN MY HOME I cant handle heat. We keep the heat turned off most of the winter. I KNOW y'all think Im exaggerating but Im not. I live in an apartment and havent had the heat on since January 21st of 2011. I keep a window open in the bedroom during the winter AND a fan on at all times. At the first sign of spring and summer the AC is checked and ready. This year I actually had to buy a window AC unit for the bedroom so I could sleep at night. This all started last year in March / April when I got sick AFTER a heat (boiler) pipe broke and flooded my bedroom. Hot water spewed for 90 minutes before they could get it stopped. I was diagnosed with UARS / SDB et al in April after 2 or 3 sleep studies...it took them til June to get my BiPap to me and set up.. Nothing has been the same since. I still have massive trouble breathing day to day.

Ive been instructed by members of my "dream team" of doctors and specialists to use the cold air. They have no clue yet why I have such trouble breathing warm air. This all has to do with my O2 levels dropping into the 50s when I sleep and going into the 80s during the day. Ive been tested and tested again for everything possible.

You say "the correct sys one heated humidifier"....as if to imply I am currently using the wrong one??

The cold water humidifier sits next to the BiPap on it's base and there is a hose from the BiPap to the tank and then the hose from the tank with the O2 that comes to the mask.
~Instead of waiting for your storm to pass why not learn to dance in the rain?

PR Pro One BiPAP w/Auto bi-flex (13/8)
O2 w/cold air humidifer
Mirage Quattro full face mask (sm)
Phillips Ever Flo-Q Ultra Quiet Stationary O2 Concentrator (2LPM)
User avatar
Resty
 
Posts: 115
Joined: Thu May 26, 2011 4:30 pm
Location: Madison, WI
Machine: PR Pro One Auto BiPap w/auto flex
Mask: Mirage Quatrro (sm), Quatrro FX
Humidifier: Yes, cold air, F&P
Year Diagnosed: 2011

Re: Extreme Dry Mouth & Throat

Postby Resty » Sun Jul 01, 2012 5:05 am

Uncle Bill.......

You just hadda suggest I breath thru my mouth during the night didnt ya? :-" And me being me, I swore I didnt. #-o

So I started trying to pay attention such as it were. What Im learning is I tend to sleep on my right side and I start out that way half sitting up, I have pillows propping me up and keeping me supported from behind as well. Anyway......it seems eventually I do end up slid down and more on my back than not. I wake up with such a dry mouth, throat and tongue it hurts and takes me considerable time swallowing and such just to stop it. I seem to notice that though my mouth and everything is so dry Im not breathing through my mouth....even my fiance' said he doesnt ever notice me asleep with my mouth open and I dont snore. IT SUCKS and is screwing with my sleep big time.

I wonder if the mask and head gear need to be replaced. I started with the Mirage Quattro and have the Quattro FX right now and dont care for it much but it works. This is only the 2nd one Ive had since I started this whole process. I really have had no trouble adjusting to this whole thing. I dont sleep very long even still but what I do sleep is good. I love love love the feeling I get when I get in bed and all comfy and slip the mask on and feel that cold air blowing in my face. Its like the best drug there is and within a minute or two Im asleep.

Im just really frustrated over this extreme dry mouth throat tongue thing and wish I knew how to stop it. I cant figure out if its the advanced Sjogrens or the UARS / SDB. Ive thought about using a warm air humidifier or whatever its called but even the thought of that warm air suffocates me.

Thanks for responding Uncle Bill, Roxx, Laura and anyone else who does.

~Resty™
~Instead of waiting for your storm to pass why not learn to dance in the rain?

PR Pro One BiPAP w/Auto bi-flex (13/8)
O2 w/cold air humidifer
Mirage Quattro full face mask (sm)
Phillips Ever Flo-Q Ultra Quiet Stationary O2 Concentrator (2LPM)
User avatar
Resty
 
Posts: 115
Joined: Thu May 26, 2011 4:30 pm
Location: Madison, WI
Machine: PR Pro One Auto BiPap w/auto flex
Mask: Mirage Quatrro (sm), Quatrro FX
Humidifier: Yes, cold air, F&P
Year Diagnosed: 2011



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