SeaLady

thanks so much!!

Irbesarton, I no longer take the furosemide, I was also taking 600 mg's of potassium and think I probably do not need that if not taking the furosemide.

I saw my gp yesterday (he is new) and he asked if my heart is fine why I was taking furosemide - I was on HC and the previous gp changed it to furosemide - he then explained that is for fluid around the heart and NOT for fluid elsewhere such as my face, hands and legs. So I have stopped taking it and will see what happens. There are sever BP meds out there that have fluid reducing drugs in them. The thing I am upset about is why I have the edema in the first place which always seems to lead back to the machine - my BP was fine until I had edema and fine before the machine.

Hi, I hope you are still here. I have a theory as to why I at least, get edema - my albunum was a little low, I am 70, had no edema until I started the machine. I used to get up 2 - 3 times a night to pee and made a beeline for the bathroom in the morning. The change is not because I am sleeping away - I still only sleep 3 - 4 hours on a good night. I have a Pituitary tumor which then causes problems to hypothalamus, pineal gland etc. I drink a good 2 liters of fluid a day, with a lot at night, the later in the day the thirstier I am. Now I take 2 furosemides in the morning and am on blood pressure meds too, my pressure was always normal prior to the machine.

So if at my age I have most likely thinning/weaker veins, capillaries that might be leaking and then you add air pressure to this mix could this make your veins and capillaries leak more fluid into your body? I realize the amount of water in the take is not enough to cause edema - but I had decent urine outflow and now I don't after using the machine - some mornings after not going all night, I pee out a whopping couple of tablespoons.

And of course I have mentioned my theory to five docs now and gotten downright absolutely NOTs, to Impossible to be laughed at - and told no one has this happening - well a LOT of people on just this forum have this happening.

Is my Theory any good?

I don't think the problem is the water from the machine, only contributes a bit more, the problem is: Where does all the fluid I drink, that I used to pee out go? If I drank a liter of fluid, then I peed out pretty much a liter - but once I used the machine, no more peeing, 90% of the fluid stays in my body. I take 2 furosemide in the morning and eventually get rid of most of the fluid only to start all over again every night. Due to the fluid I now have high blood pressure and have to take a pill for that - prior to CPAP I had great BP for my age 130/70, no fluid retention. I need the CPAP machine but I also need to figure out how it causes the fluid retention to see how I and the rest of us can still use the machine and not get fluid. I think it is the air pressure that causes our veins and capillaries to leak out more fluid - I have turned my air pressure down and seem to get less fluid build up.

Yes I am sure there are doc out there that use a CPAP, however they seem few and far between, I went and read all the responses to the link you posted, but could not figure out which person was a doctor.

All I know the more I read and poke around the more I see so many who have the same problem, no getting up to use the bathroom from night one, all retaining fluid. I also found out people who have histamine sensitivity and a lack of DAO can also get more leaking of veins and capillaries - they has to be a reason.

I started using a ResMed10 machine 2.5 years ago, I am not even sure what kind of apnea I have, but they said it was bad, I call it air locking as my soft pallet and uvula drop and block my throat. I have never slept well, but from another issue so I am lucky if I can get 3 hours a night, but the machine allows me to fall asleep, by the time I got it I was in bad shape.

What I noticed from night one is that I have never gotten up to pee - and oddly it is not like I have a full bladder in the morning - I used to get up 2 - 3 times a night, and as stated above it is not that I am sleeping peacefully away, but I am resting peacefully even if I don't sleep and that is also a blessing.

So I have a bit of a language problem as my French is still not that good and covid started right after I got my machine and the tech who normally comes to the house doesn't speak any English, but for the most part we get by. There is a lady in the home office that we call if we have problems that google translate can't help with.

I also had NO water retention before I used my apnea machine, didn't notice it right away, but after several months the tech brought me a humidifier tank and eventually a heated hose. Then I started noticing during the winter that my socks were leaving a lot of indents on my legs...........still didn't think about it too much, then one day I checked my blood pressure and it was wicked high. Doctor put me on fluid pills, blood pressure pills etc. BUT no one could tell me why this was happening. I got sent to heart, lung, kidney docs - tons and tons of tests, had my arteries looked at, ultrasound of kidneys, I lived at testing places and seeing docs who all said you are fine - you are good. Well, NO I was not good, I could not breathe, I huffed and puffed doing anything. And not just my legs, my hands and my face are swollen every morning, my right eye as I sleep on that side is often swollen shut and then I take my TWO furosemide pills and let the peeing begin, as in 4 - 6 lbs. of water.

So I finally started piecing the puzzle together that everything changed when I started using the machine. - of course when I mentioned this to my doc, the lung doc, the heart doc, yesterday another lung doc - they all say it is impossible, as does some tech on here - well really how impossible when so many of us are having the same problem?

I found out on line how to turn down the pressure of my machine, it was on 13 (I live in France so have no idea if the numbers are the same or not in the US) I moved down to 10, then went down by .2 thru the 9's and am now at 8.8, I also lowered the humidity, and switched back, since it is warm now, to the non-heated hose and I have gotten a bit better.

I also do not know what else causes an "episode" to show up on your reports, if removing the mask does it cause one, if putting the mask under my chin so I can drink some water register as an episode? If adjusting? My episodes are generally all well below 1.0 - usually .5 - .8 so I think that must be ok? haha remember my machine is in French so I do the best I can at understanding what it tells me.

I have some other health issues, and I read if your Albunim is low (show on blood tests) it can cause leaking of the capillaries, mine was a bit low, but not enough to cause all this fluid, but what if you add air pressure to the mix, might you then get more leaking? The fluid from the water tank has to go somewhere - right? Plus I drink a lot of fluid at night, plenty of water during the day, but the later in the day the thirstier I get. So where is all this fluid going, why is it not going to my bladder??

I saw the apnea doc yesterday who also seems very skeptical of my theory, but at least listened but how can things be one way one day and completely changed the next? She is prescribing a different machine for me - so am hoping it will help. I also do not understand what the different types of machines are, all I know is this one is smaller and water tank is on the back - I also requested a different technician who might speak some English to help with some questions.

I don't have any other support over here, but at least everything here is free, I have never paid anything for any equipment, visits etc. and they seem to give me a lot of nose pieces, hoses, the short hoses that the nose piece goes into etc. I just wash my nose piece with soap and water, my hose with vinegar water and soap and because the water here is hard (I use bottled water but still get calcium build up) so wash my tank with vinegar water.

I also get a lot of rainout with the heated hose, after the machine is on for a while I can pull the nose piece away and there are water droplets in there - when using the heated hose I put the machine on a shelf that was 4" off the floor but still got rainout. I have lowered the temp, lowered humidity down to 3 now, had been set on 5 or 6. Even with the regular hose I get droplets in the nose piece, I use I think a cloud/pillow nose piece.

Lastly does everyone know that the dry air from the machine can cause surface cavities - when you lose your natural saliva it can cause surface cavities which my dentist could not understand until I told him I use a machine. Then he said that is why you are getting these, so I bought some mouth moisturizer spray.

Sorry for such a long post, but boy I am looking for some answers and some proof to show the doctors who say fluid retention and breathing problems cannot be from the machine, yet not one of them can offer a solution as to why this happened. The doctor yesterday when I said there are many of us with this problem at least said maybe. It was a fun visit, she speaks French, mine as we know is not great, my husband speaks Spanish and so did the doc so we had this Franglish/Spanish conversation going on lol. She did seem a bit impressed when I told her there were forums out here that had many people with the same problems - I really wish there were doctors that use apnea machine and then they might understand us.

My CPAP machine has caused fluid retention and breathing problems, I turned down my air pressure it was on 13 originally and now I am down to 8.8 and it seems to help, I am in France so not sure if the numbers are the same in other countries.

When my tech brought me the heated hose he indicated that I had to put it on the floor - well yuck I just didn't like the thought, but finally found a night stand with a shelf that is 4" off the floor - problem still existed. I have a bit of a language problem as I live in France and the tech that comes to bring me equipment speaks almost no English, but I keep learning French and we get by. But I have figured out the machine has caused fluid retention, which cause high blood pressure that I never had before and breathing problems from all the fluid retention. But I do sleep in a very cold room in the winter, my heat is always turned off as I overheat during the night once I lie down so maybe that creates my rainout.

I am sure for some people it could be that they sleep now, where prior to using the machine they did not sleep well, woke and used the bathroom. But that is not my case, I have another issue which make me get very little sleep, the huge difference for me using the machine is that I can now fall asleep and not keep what I call air locking or at least I rest. From night 1 of using the machine I have never gotten up to go to the bathroom, (2.5 years). But no one can explain where the fluid goes now, even in the morning after not going all night there is no urgency as there is still not that much to pee out. Plus I tend to drink a lot of fluids at night and my humidifier is also adding some fluid to the mix. I take two furosemide fluid pills every morning and then boy I use the bathroom every 10 mins. I can lose 4 - 6 lbs. in 5 hours running to the bathroom. I was sent to every specialist under the sun it seems, twice and they all say the same thing, you are fine, well no I can't breathe if I do anything, just walking, stairs are now a killer and I avoid as much as possible. There has to be a correlation and it really pisses me off that the docs say this could not happen, there are too many of us.