I have been using a CPAP machine for almost 3 months. From the night I used it I did not wake to go to the bathroom during the night. Although this was nice, I developed a problem immediately (from the first night) with swelling in my legs (calves, ankles, feet) and in my hands. I did NOT mention it to the sleep doctor because It was a month until my follow-up appointment and I never saw it listed as a side effect of CPAP therapy in materials I read. However, since I was already scheduled for on-going app'ts with my GP who had begun treating me for high blood pressure, (a month before referring me to the sleep clinic for a polysomnogram), on two of these visits I complained to her about the swelling in legs and feet and she prescribed daily use of a 20 mg. diuretic (prior to that, I had only had to take a diuretic occasionally on hot summer days....not any other time of year). The diuretic was not effective in reducing the swelling, so she (the GP) changed my blood pressure meds to one with a diruretic (Micardis 80 mg. with 12.5 mg. diuretic) figuring that when combined with the 20 mg. furosemide the swelling would subside. It didn't lessen and so at my next BP monitoring appt. I asked her why the swelling was so severe, and she said "Leaky veins, it runs in families.....try losing some weight." So I never mentioned this to the sleep doctor at the post-titration appointment.
However, I know that there is more to it than that, because prior to CPAP therapy I did not experience this, and with the increase in CPAP pressure to 12 cm H20 following titration, the swelling is quite severe. More telling is the fact that when I suspended CPAP therapy for almost a week (due to difficulties with the DME provider), the swelling went down (and night time visits to the bathroom to urinate returned). A return to using CPAP resulted in immediate severe swelling (as well as NO trips to the washroom). I don't know if it is relevant info to mention that I have more hypopneas than apneas, and oxygen levels at first sleep study (before diagnosis) fell to 71%. This has improved significantly with CPAP therapy. I feel stupid that I didn't mention it to the sleep doc on my last visit, and am not scheduled to see him for 6 months. But I thought maybe it was just "leaky veins" as GP said. I now KNOW beyond any doubt that it is NOT that. Due to washroom use changing with use of the CPAP machine it not only have something to do with "atrial natriuretic hormone", but is directly linked to CPAP treatment. I don't know what can be done, but this severe swelling day and night is driving me bonkers. Is there a solution?
I'm wondering if maybe you don't have some other problem, like maybe a weak heart or weak kidneys, that is causing the fluid buildup. As long as you are getting up several times a night, the ambulation associated with doing that keeps enough fluid moving so that you don't notice a problem. Once you started sleeping through the night, and you weren't getting up and walking around every so often, then you noticed something was wrong.
Because you have been on and off CPAP, it is clear that the fluid build-up happens when you are on CPAP, and it goes away when you are off CPAP. But maybe the problem isn't directly attributable to the CPAP. Maybe it is more about whether you are getting up several times a night or not. Or maybe it is about the CPAP, and you really need to get back with the sleep doctor. I don't know that much about CPAP myself, so I can't tell you that it's definitely NOT due to the CPAP. It's interesting that the more effective your CPAP got, the worse the swelling got.
I just know that, personally, I'm not impressed by "leaky veins" as an answer. If that explained it, I would expect your veins to be just as leaky, whether you were or weren't on CPAP. I think everybody's veins are leaky, anyway. It's normal for fluid (lymph) to pass through the vessel walls under certain circumstances. Whether you have inappropriate fluid build-up depends on how the pumping (heart) and filtering (kidney) system is working, anyway. When the heart or kidneys don't work well, then that's when the back-pressure builds up in the system, fluid accumulates, and you notice that you have swelling.
You need a doctor's care to identify the source of the problem. I don't know whether you want to go back and rattle your GP's cage and try to get her to look harder for the answer, or whether you will want to call the sleep specialist's office to get your follow-up appointment rescheduled so you can see him sooner. Swelling of the extremities can be a symptom of right heart failure, so if it's not working out to get an answer from either your GP or the sleep specialist, you might want go ahead and see a cardiologist on your own. It's nice if you can go through the proper channels and follow the chain of command and all that, but if you have to strike out on your own, that's the next specialist that I would want to consult.
Good luck. I don't have the answer for you. My intention is simply to try to help you think through it.
Thank you for taking the time to respond to my query. It helps to look at the problem through another person's eyes. After thinking more objectively about it, I believe (as you suggested) that although the swellling occurs with CPAP use, it is not DIRECTLY attributable to the CPAP. I think the CPAP just acts as the catalyst or the trigger to the swelling. Since I wrote my question here on the MedHelp site, I had an app't with a pulmonologist/respiratory specialist (whom my GP had also referred me to, many months ago at the time of my (approx. annual) physical exam. App't was about results of Pulmonary Function Test and Oxygen Saturation Test (daytime), which it turns out were "okay.....no problems". He happens to also be one of the docs who works part of the time at the Sleep Clinic and when I asked him he said that it it definitely NOT a side effect of the CPAP. (And while I do not agree that it is merely "coincidental".......which is like "happenstance", I am going to go back and see my sleep doc, as the respiratory specialist suggested......since he told me that my sleep doc is also a heart specialist, and can investigate it from that perspective. So he said he would facilitate another app't with my sleep doc. I was unaware that my sleep doc is also a sleep doc, since his name is not listed among the specialists in the phone book (some others aren't either). So perhaps the sleep doc can help me discover why the swelling is occuring and why the diuretics are not working.
By the time my mother was 34 she had high blood prssure (and varicose veins) and at the time she was my exact age she had a massive heart attack (myocardial infarction) during an angioplasty procedure and underwent an emergency quadruple bipass. For years she has developed many blood clots in her legs, and now (at 85) has survived almost 3 years with "multiple pulmonary embolisms" in her lungs (and is on blood thinner). She looks after herself and does everything her doctor asks of her, and her doc calls her the "Energizer bunny". With that kind of genetic predisposition (to heart problems) I'm deciding (as you suggested) to follow up. (And yes, the swelling is connected to CPAP but not the cause of it.
Also, I did not realize that ANY fluid (lymph) passes through the walls of the veins under certain circumstances. Interesting.......just need to get the docs to determine the circumstances causing my leaking.
Again thenks, I really appreciate your response and it has helped me to establish a framework in which to view the problem.......and hopefully "they" can find a solution. Thanks for sharing, skyednsr.
You triggered me to double-check that fluid can pass back and forth from the blood vessels to the lymphatic system, and yes, it does. It can only happen at the level of the capillaries, but if you google a phrase like "fluid passing through blood vessel walls," you will get some references to it.
Thanks for your post! I've been on CPAP for 3 nights and sure enough woke up 3rd morning with swollen ankles, legs, face and alot of pain. Prior to CPAP I had no swelling! I had to use the rest room several times a night though and I noticed I was only going once a night now. When I called the ( sleep Dr.'s) office today they told me to call my cadiologist right away. She had left for the day and her nurse told me not to sleep with Cpap 'till she talks to me or sees me!!
Really frustrated!! Have been waiting for a long time for a good night sleep!!! Thought this would really work!!!!!!! Can't beleive you were told leaky veins.................................:( :(
I am so glad I found this page. I have been using my cpap for over a year now. When I first started, I was 60 lbs heavier than I am now but my ankles were not swollen. Before I lost weight, my ankles and lower legs became so swollen that I could hardly walk. When I stopped using my cpap, the swelling went away. I use the machine nightly. Now that I have lost weight, the swelling is not as bad but I still swell. Last night, I fell asleep without the cpap and today, my ankles have no swelling at all. I have talked to my doctor and the nurse practioner about this. They said there could not be a relation to my swelling and the cpap. I had a stress echo done and it showed my heart was fine. I wonder if I need additional tests for my kidneys or my heart.
Several months ago I was on 40mg of furosemide and started getting edema in my feet and legs again... They doubled to 80mg and it still is bad after a month. It's getting worse.
I tried to think of what I was doing different for this to happen. I couldn't think of anything..Diet, salt etc but then it dawned on me that it started right when I started using my CPAP. I being the curious self medicating Physician I did some research. Could this be? Could my CPAP cause this? Believe it or not... YES!
I could have written your original post! Also Sadies too! I asked my Sleep Clinic people at the VA and they were totally ignorant... I mentioned it to my liver transplant Physician he said " You know you might be right! It could be because of "PEEPS"! I smiled and he went off as he thought aloud with Dr speak that was a bit over my head... But I said Yes! I found something on the internet about it. Health professionals hate it when you say that because there is a lot of "hookie" out there nut when you mention it was from the NIH they say "Ya don't say? Hmmmm..." So print this study the next time you see a Dr and say "READ THIS!" :)
I have also been having a major problem with swelling. It is severe and painful in my hands and feet especially. I run my hands under water and massage my hands every morning. After this, it is still hard to hold a brush or open things with my hands. It's painful to even try to make a fist. I have been mentioning it to my doctors for a year. I just brought this up to my sleep clinic doctor who told me to go off CPAP for five days. He said that he has only heard of this happening with one other person, but they were very vague about it. (I had brought lots of pictures of my swollen hands. Some mornings my fingers are so swollen it nearly feels like my skin is going to split open.)
Well, last night I went without it for the first time in just under two years. The positive difference is amazing. I was able to make a fist easily with just a little stiffness. I now realize that the rest of my body feels so much better as well. My face is its normal size as well. I really didn't anticipate any change. Hopefully now, someone will be able to figure something out!
Finding this thread lets me know that, while this might be rare, it certainly exists!
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