7 months on CPAP/ weight and energy still a problem

Hello folks, I haven't posted in months but wanted to see if anyone had any similar experiences as I am with my progress or lack thereof. My index was 46 when I was tested and pressure set to 8. I started using CPAP in March, a Fisher and Paykel machine with the Fisher and Paykel Zest mask. My titration was actually with a different mask, one with nasal pillows, wanted to be sure and mention that in case it was relevant....I asked at the sleep center and they said it doesn't matter. (not sure I believe that).

So, here it is several months later and I am not sure I am on the right path for full recovery. I definitely feel better than I did but I had actually gained weight (13 pounds!) when I went for my physical a month or so ago (over the last year). Furthermore, I had significant edema (swelling) in my ankles. I know I am eating less because of improved energy and more healthy too. (less sugar for sure! no more soda or high fructose corn syrup, and NO fast food). I also take supplements and am trying to walk more, but true enough that my exercise needs to increase. It was hard with the edema but things better now for walking with the diuretic.

Well, The first thing my doctor did (without even asking about my diet or anything) was suggest Bariatric surgery! I was pissed! (another long story I won't go into now) I immediately declined, as I know my food intake has been slowly decreasing over time so I know that making my stomach smaller is not going to speed weight loss. After a few emails back and forth with my doctor (who I dislike at this point after much frustration over several issues) and some input from a family friend who is a doctor I was prescribed a very mild dose diuretic. 12.5 milligram Hydrochlorothiazide which is helping a little but didn't really correct the weight gain. (family friend thought it looked like I had 20 extra pounds of fluid in my legs!) I look like crap, like I am about to give birth and have read that the increased cortisol causes weight gain around the middle. But now I am getting treatment, isn't that supposed to improve? Other improvements I have seen:
My hair is no longer falling out in the shower, dental hygeinist said my tongue and gums look better, I can drive without getting drowsy, need less coffee/tea in the am, less irritable for sure, so that is all good.

Also, at the sleep center I asked the tech about turning up the pressure because I am still finding that although I feel much better over time than I did before, I still get pretty dang tired every day. I did my titration with a nasal pillows mask but now use a different one after finding that the nasal pillows made my nostrils sore and dry, I just couldn't take it. the mask is OK, has improved over time with some adjustments but generally speaking I can't help thinking, "is that all there is?". After reading so many inspiring stories here I just expected to feel a lot better than I do after six months or so of treatment. Also, pardon if this is TMI, but my periods are all but gone too and I am only 44. I used to have them every 25-27 days like clock work. I saw in some other cpap forums that other people complained of actually gaining weight with cpap so wondering if anyone has had trouble losing weight or even gaining? Does it take a really long time for hormones, etc to adjust back to normal? Looking for insight.....

also note, I know I need to go back to Sleep doctor to possibly push more on the topic of increasing the pressure. The Tech said I HAD to see the doctor. When I did titration I had a terrible night and I told them I didn't think I was in REM 4 but they said the data said I was long enough to set the pressure. I felt like I was up all night. My machine does not calculate a bunch of figures, I took it in to see what the leakage rate was a month or so ago and they said something was broken (I forget what) so they couldn't get the info. I don't think leakage is an issue though, as I have this thing adjusted pretty well and I pretty much sleep on my left side with a cpap pillow, propped up on another pillow, every night.

So looking for comments from anyone having same experiences....or other insightful help...thanks!

LadyJ333 wrote:..several months later and I am not sure I am on the right path for full recovery

What are your nightly numbers: leak, AI, HI? Took me 9 months to see improvements in ALL areas, most were small improvements that I only noticed after a few weeks, I continued to see improvements up until I started mouth leaking at about month 17-18. Took me forever with my dumb CPAP to identify what was happening (in fact discovering this forum) and make changes. Now, I am in recovery again, not quite where I was last Feb yet I'm making improvements once again instead of backsliding into apnea.

LadyJ333 wrote:..had significant edema (swelling) in my ankles

How's your BP? Edema could be the result of events occurring at night.

LadyJ333 wrote:...Does it take a really long time for hormones, etc to adjust back to normal?

My sleep doc and cardiologist said some folks take up to 12 months to see benefits...be glad you're one of them!

LadyJ333 wrote:...My machine does not calculate a bunch of figures, I took it in to see what the leakage rate was a month or so ago and they said something was broken (I forget what) so they couldn't get the info

They should get the machine fixed! It's under warrenty right?

The machine is fine, but the instrument they use to calculate leakage wasn't working.....I don't recall the specifics!

My blood pressure is actually really good....like 110/70.....doctor listened to my heart and said it sounded fine, but as I said I was thinking of finding a new doctor that is willing to help me more with my situation without judging me for being fat.....it's very frustrating.....

Fisher and Paykel machine??? Exactly which model? Are you sure it is a fully data capable model? Most of them aren't.

I have been on BI-PAP since May (6 months). I have also gained weight (25lbs.) I also have edema in my legs. I was put on water pills, which really didn't help. I had my heart completely tested and it all checked good. My liver and kidneys are fine. Had a CT scan of my veins in my legs and no blood clots were found. I quit taking the water pills two weeks ago. In the last week I've lost 7 lbs. None of my doctors ( including my sleep doctors) have a clue. Since I've started losing weight, we're going to see how it goes for a couple of weeks. I'm not sure if my body is just getting used to having some real oxygen or what.

Pugsy...I know my machine is NOT data capable....they were going to check it at the sleep center for leakage rate but I am not sure how they do that or perhaps I misunderstood the tech.

Rocky....I will be VERY interested to see how your story pans out....

Thanks for replying, I will keep checking to see if anyone else has anything to add.

I don't think getting a new data capable machine is an option at this point, but I guess I can ask my doctor at the sleep center. Again, he started out being pretty likable but as soon as I had detailed questions about things I read here and other places on the internet he lost patience...so it appears. Doctor knows best I guess. This is my impression of Doctors lately....not a good one.....all of them are so clinical and they don't really have the patience to hear you out or address your concerns. When I mentioned something I read he all but rolled his eyes.

I'm growing weary........

Since it sounds like you do not have a data capable machine, I suggest you request of your doctor to order a two week loaner of an auto titrating machine to determine your current pressure needs. Before they get a chance to erase your card, make sure they know you want complete copies of the accumulated data.

Also, get a copy of your prior studies "for your records". See for yourself how much you slept and in what stages. Tell them you want the full report, not just the summary. You will want to have all these records in case you decide to not use this doctor any longer.

If you happen to find your pressure is therapeutic by using the loaner, it will be time to look for other possible causes. So much of what you describe sounds like excerpts from my own story. My edema has finally gotten under control. At one point after several months of unsuccessful treatment I asked my doctor to switch me to an autopap and this seemingly docile man turned into an angry condescending and intimidating creature. It was very hard for me, but I refused to just slink away. He stalked out and I didn't see him again, but he sent his assistant in to tell me he wouldn't order a machine trade, but would order a loaner for two weeks. Before that 2 weeks was up, I had bought a used machine from a member here for a fraction of what my insurance had already paid for the bare bones machine.

Let us know how the loaner machine works out. The results may answer your concerns.

Kathy

Hi, ok my 2 c's worth is... Has your MD done a TSH (thyroid) test on you lately? The mention of your early menopause makes me wonder if all is well there as so many OSA symptoms overlap thyroid ones. The other thing is you said you're using a nasal mask, but what if you're breathing with your mouth open every night? The Cpap air is all going out and not down where it belongs, so you might want to look into a full face mask and see if it helps (when called for it does make a big difference).

Cathy, thank you thank you thank you for your information and clearly we have had some similar doctor mishaps too. I will ask for a loaner and see how he responds. I really appreciate it. So, this new machine you bought? Is it the one you list on your profile?

"Hi, ok my 2 c's worth is... Has your MD done a TSH (thyroid) test on you lately? The mention of your early menopause makes me wonder if all is well there as so many OSA symptoms overlap thyroid ones. The other thing is you said you're using a nasal mask, but what if you're breathing with your mouth open every night? The Cpap air is all going out and not down where it belongs, so you might want to look into a full face mask and see if it helps (when called for it does make a big difference)."

Julie, I had a TSH and it was in the normal range. I know there are more tests an endo can do but like I said, I have 2 somewhat dismissive doctors and so I am going to search for someone who will be more participatory in my recovery. Family friend is a DO and she is the one who recommended the diuretic and said I might also have polycystic ovarian syndrome. PCOS. She's in another state or she'd be my doctor. I have a few options I am just waiting to spread out my claims, etc....(don't get me started on the whole annoying insurance thing). I know I have to have a somewhat invasive ultrasound to diagnose and it seems that losing weight will help so at this point I think I need to see if even 20 pounds off helps. Oh, didn't mention that I started taking NOW foods Thyroid energy supplement once a day to see if my energy improves and I think, I am not sure, that I might be sleeping a bit sounder. I also take the vegetable enzymes which really helped digestive issues. (I'm a mess basically). I take lots of other supplements too...trying not to get sick. I really do feel that I keep my mouth closed, I really trained myself but maybe I don't! I thought it would wake me up (the suction when the mouth opens). I guess I will find out with the loaner....

At least I have some ideas and other insight...Much appreciated ladies....have a great night...