bipap and dryness

[irismarie]

I have never heard anyone else complain of this.

MY bipap is supposed to send a fine spray of water as well as air but after a while my mouth and throat are as dry and stiff as a board and this wakes me up. It is frightening as I cannot swallow and the inside of my mouth is like sandpaper. I know Barry has v dry mouth but I do not think this is from his bipap. I simply cannot use it to sleep because I wake in this horrible panic an need of liquid which then of course I cannot swallow. JUst had a horrible crisis and I am frankly terrified.

And I think my bipap is just air. Is there a special attachment or something for oxygen? I do not think I asked enough questions in the hospital but you do not find out these things till too late.

I am scared.

 

[BarryG]

Dear Irismarie, that sounds horrible. I sure know what it feels like to have a mouth so dry that it hurts.

My Bipap has a humidifier attachment so that the air from the Bipap itself passes over heated water and then out the hose to me. There is no spray of water but the air is very moist and although my mouth doesn't feel great when I wake up after a night using it it isn't too dry and I have it set at medium. The Bipap is supposed to be just air, all it is supposed to do is help you breathe by supplying ordinary air at a higher than ambient pressure.

I know that you can't swallow but can you rinse? I can't swallow either but if I stick my head under the tap I can still rinse my mouth out. And I use my Waterpik to rinse because it allows me to get a small amount of water to the back of my throat without choking while I am bent over the sink. I do that four or five times a day and it really helps, especially because I am breathing through my mouth all the time.

It also sounds like you are dehydrated, if you cant drink you need a PEG fast! It is just as important for drinking as it is for eating.

 

[irismarie]

Thank you so much for your reply, Barry
Humidifier was the word I was looking for. Sounds like yours is the same as mine but maybe mine isnt set properly. The guy set it up with a smartcard and I have no book of instructions. t is now 1 40 am but I am scared to go back to bed. Cannot reach the tap in the sinks from my wheekchair but can rinse from a cup.
I seem to have got it stuck in my head that I am on my way out v soon. Need more emotional help at the moment.
Did not being able to swallow make you panic
Do you get used to it?
The swallowing tests showed I should not attempt to drink liquids but when I mentioned a PEG they said Oh you are not there yet......;
Âppt with ALS specialist in 2 weeks. Hope I can wait that long
Love love love you all

 

[BarryG]

"The swallowing tests showed I should not attempt to drink liquids but when I mentioned a PEG they said Oh you are not there yet......;"

That is the most ridiculous thing that I have ever heard. How are you supposed to survive without being able to stay hydrated? Reminds me of Marie Antoinette and "Let them eat cake".

I had my peg long before I was completely unable to swallow and so should you. That makes me so mad and worried for you, you need to get that peg ASAP! Please try to relax and do a rinse and if there is an adjustment to the humidifier try turning it up.

Try to get some sleep and remember that we love you

 

[CCMominVA]

Oh that sounds just awful! My dad's bi-pap has a humidifier. He was getting very anxious as well at night and we started giving him Lorazepam - anti anxiety medication. Very small doses, but it has helped him sleep much better and not feel so edgy. I pray you find comfort, and can rest peacefully! Restorative sleep is so important for you! Can you get in touch with the respiratory therapist and have them get a bipap for you with a humidifier if yours doesn't already have one?

CC

 

[helpinhand]

Irismarie can the person that set your Bipap up come and make adjustments. Sounds like you need to adjust the heat setting the warmer the water the more saturated the air becomes, that might help. I too cannot believe that they said not to drink anything did they not suggest using a thickener that is what we use for dad so he has more control of the liquid. Honey thick was what works best for him. Goodluck with your sleep tonight, call bipap company in AM to see what they suggest. hugs to you.

 

[morningdew]

Dear Irismarie,

I feel I know you so well through reading your posts. I really feel for you at this time. Hugs.
Joan

 

[irismarie]

? Well, I was what the eNGLish call "a big girl's blouse during the night. Thank you for the support for the panicky girl.
What happened was tha the mouth and throat and tongue were like dried meat, stiff as a board. It woke me up, and I was in panic cos I could not move anything (this could have only lasted seconds, of course) in my mouth. I tried to swallow some of my jelly ( I use agar agar to thicken my drinks as that powder is so disgusting) and of course the throat was blocked solid with dryness and I choked. It took me ages to calm down, all the while telling myself that panic only makes things worse. Choking too much lately - it is horrible, isnt it!

The side effects listed head with "dry mouth, nose, etc..) Perhaps if I am already a bit dehydrated that is exaggerated. I remember Linda saying to me how she LONGED to grab a bottle of water in the Summer and swig it and how I agree!

One more thing, is it normal, please, for the machine to go on gently letting out air when it is switched off? I do not remember noticing this at the beginning but I can find no way to switch it completely OFF now.

Can call the man but he has SUCH a long way to come and if it is normal it would be a pity to take him from his reaL patients while we all know I am faking this and am going to be ALL RIGHT;

Much love love love to my darling friends

 

[BarryG]

Irismarie, glad you are ok. Yes it is normal for the machine to blow air after you have turned it off. It is just cooling down from being attached to someone as hot as you! My RT said that I could unplug it or just let it go on blowing so that is what I do, it is a loaner so I don't care!
Take care and try to get some more fluids.
Love, Barry

 

[Phil M]

Irismarie...are you turning it on each night? I made that mistake. I didn't know it had to be turned on each time you use it. Also, the higher the temp, the more moister.

 

[Jane]

Irismarie, I am not sure if this would help you but it is something you could check out, we used a spray product called MistR, gave a spray or two in the mouth and it really did help with the dryness. We are in Canada but I'm sure there are similar products available in your area.
Hope you get some relief from this problem

 

[BarryG]

Irismarie, what make and model of Bipap are you using?

 

[irismarie]

Thank you all for advice and suggestions . I am following them up. Barry, it is a RESMED VPAP IV ST.

I try to use it in the day so I can stop it when it gets too dry without waking up to the nightmare. IN fact, I find it comfortable nad comforting to use. Just cannot take the drying.
I thought when Linda says she uses hers for drying the corners of her mouth that surely must mean hers would dry up her mouth during the night, too?
It sounds like a big fuss for nothing, but it really isn't. .
I dont think I can change the settings as they are set by a smartcard. WIll phone the man next week

 

[irismarie]

Have just read Joel had the same problem back in 2007. Mouth sprays might help as Jane suggests. ALl my life from a child have had horrible issues about dryness - use masses of cream to combat dry feeling - and this is like a culmination of all that nasty feeling.

 

[BarryG]

Irismarie, that is exactly the unit I have and while the Bipap itself cannot be adjusted by the user (or at least not this user, I just sent the smart card to my RT for her to adjust the settings after I had been on it for two weeks) the humidity on the attached humidifier can be adjusted by turning the knob on the top.

Here is the Bipap
ResMed - VPAP? IV ST

And here is the humidifier that I have that is adjustable
ResMed - H4i?

I have played around with the humidifier settings and if I turn it up past medium it is like sleeping in a rain forest so I has to be enough to stop your dry mouth and throat.

My biggest problem is swallowing air, my mouth is always open and so I ingest a lot of air which isn't really a problem but it does cause a lot of wind under the covers. I get rude noises from both ends!