One month down on ASV some good and now some bad.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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RestlessinWoolley
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One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Thu May 11, 2017 12:33 am

Well I started noticing it right off the start but figured I would get used to it. But I was waking up feeling like a balloon every morning. So at first I dismissed my new machine because my numbers are looking so good .3-.5 average and an average of 1.3 over 30 nights. I figured I was having an old issue come back to haunt me as I was sleeping better. My heartburn came back, terrible gas and bloating, and severe pain at the edge of my lowest right rib (I'm.missing 3 due to a surgery. Anyway I tried clear diet for a few days to make things worse then I ended up in the ER in the worst pain imaginable, up there with a stuck kidney stone. CT scan to find nothing. X-RAY found excessive gas in my stomach and intestines. Appendix looked good. So fast forward to this week and today I see a GI doc who totally dismisses it being my ASV machine as if you wear a FFM like I do it basically rules out mouth breathing. I explained when I am relaxing and get comfortable it's like I'm swallowing air sometimes breathing thru my nose. Because I can sit up when I feel the pain and 99% of the time but. So he's now ordered a Gastric Emptying test next week and an ultrasound of my intestines and belly as I am still pretty sensitive in the belly. Been wearing my gym pants or sweats for the last week as any tight fitting clothes hurts like heck and over the last month due to swelling and bloating I've gained 3" on the waist. He said to stop using my machine a few nights or switch back to CPAP if I could. (explained I would take that up with my sleep clinic if necessary) then argue​d about the fact I was on Medicare telling me I'm too young it's only for old people. Had to go into why and he realized maybe he should of preread my clinic file before coming in.

Anyway an hour after I left I get a call and he's ordered tests for Celiac's Disease and a endoscopy next month. Changed me from Zantac to Prilosec to see if it helps, saying the CPAP has more then likely agitated my old peptic ulcer that I got years ago. Told me to stop drinking anything with caffeine and a list of foods he sent to my email to avoid.

Anyway what are the odds that it really is my machine 12 is my Inhale pressure, but it can go as high as 22 but my epap average is 6.5, PS Average 6.1.

Hopefully the endoscopy shows what's up tired of passing gas all day long and burping when I eat. Something has been stirred up. Just hate waiting another month to get it done as he only does them on Tuesdays.

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RestlessinWoolley
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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Thu May 11, 2017 1:56 am

I forgot to say I found a neat feature with the new DreamStation ASV since you have to gold the stop button for 3 seconds to stop treatment a simple press allows you to enter into the menus usually only available when the machine is off. If you go into My Info and select Monitor Parameters it will stay up on the screen indefinitely. Also the alarms are quite nice. I have the disconnect alarm set on 15 seconds to wake me up if I remove the mask in my sleep. Min Vent set at 5 so if my breathing slows down too much it wakes me, I do not have the apnea alarm set because no matter how I set it I will trip it. It requires a press of the now lit up knob to silence and another press to clear. I makes a nice red ring appear on the black knob and a status indicator light up red/yellow under the logo. The screen will light up as well with the alarm notification. I have to take back everything I said bad about the Auto Cpap I started with. Everything but the pain in the ass humidifier tank. It's just a pain to get it in and out nightly as even on 3 with the tube set on 3 I drain it nightly with adaptive on. I seem to go thru a gallon of distilled water every three weeks now. The heated hose makes it so nice now. They did good getting it set up. Menu screen is totally adjustable now and all the way dim on auto hardly lights up the room, I miss that a bit as I'd use it to make haste to the bathroom. I just wish for it's price and design they made a better case for it. I liked how the resmed had a spot for the mask the case for the DS is the same across the line no changes, I'll be taking my first trip in a few weeks with it and going camping for 5 nights in July with it. Found that I can use a Harley Gel Battery with my 300w inverter I ran a 100w lightbulb 3 days straight before it dropped below 12v. If I use my solar inverter I should be able to use it with the battery to run my CPAP even with the humidifier as we are dry camping. Let the sun charge it in the day so I won't have to run the genset all the time.

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Re: One month down on ASV some good and now some bad.

Post by klv329 » Thu May 11, 2017 2:55 am

For the aerophagia, I had have to keep the heartburn under control, and make some adjustments:

1. no more caffeine for me.
2. no more anything that irritates the sensitive parts of my stomach - after an endoscopy the doc said it was like skinned knee and needed healing at the bottom of the stomach.
3. use a soft neckbrace to keep the chin up. as soon as the chin drops, my aerophagia can begin. I picked up these DMI Countoured cervical collars at $5 each from Amazon.
4. In Resmed AutoASV mode, adjusted epap to a necessary range, and no more.
5, Adjusted Max PS to just a little more than necessary. 10 is enough for me, it's at 11 right now.
6. Try not to breath with the chest, just the diaphragm, so the air has some place to go other than into the stomach. Resistance breathing exercises may or may not help.
7. no food 3 hours before bedtime. this is tough for me because of low blood sugar levels.
8. i take ranitidine, usually 2 150mg, an hour before bedtime. Not sure if that is too much, but it reduces stomach acid.
9. and of course, what appears to be the futile weight loss efforts.

It seems that the heartburn weakens the esophogeal sphincter. But now almost everything gives me heartburn.

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Re: One month down on ASV some good and now some bad.

Post by Julie » Thu May 11, 2017 4:15 am

I would not advise anyone how to breathe on Cpap if they're experiencing problems - the whole point is to breathe naturally (for that person) and not have them become conscious of how they're breathing which usually leads to anxiety. And not eating at all - regardless of what you eat - for 3 hrs before sleeping is likely to activate more acid production than you'd have if you allowed yourself at least a small snack of e.g. protein at some point. Using prescription (or even OTC) meds to suppress all acid before lying down is unrealistic and can backfire, whereas if you feel the need for 'something', try a small (or even half) of a TUMS right before lying down and you might find that it makes the difference while not trying to fight your body's need for some acid to process normal digestion.

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Re: One month down on ASV some good and now some bad.

Post by Pugsy » Thu May 11, 2017 7:41 am

Well I would bet my last dollar that the ASV pressures are responsible for the belly/gut/aerophagia symptoms despite what your GI doc says.

I suggest that you take it up with your sleep doctor. There may be some setting compromises that can be done that might help reduce the air in the belly issues.

You are in a tough catch 22 situation. You need the pressures for the centrals and while those pressure bursts aren't prolonged...they do get up there briefly and for some people it's enough to blow the air into the stomach. So you need the pressures for one thing but the pressures cause a different problem. Get with your sleep doctor.
I would also bet my last dollar that all those fancy GI Tests aren't going to show much.
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RestlessinWoolley
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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Thu May 11, 2017 3:53 pm

I messaged my Sleep Doc, and there is little she can do till I see her next month, and my Endoscopy isn't till the day after I see her anyway. She feels its most likely pressure related as well, but isnt going to hurt to check on my Ulcer and my reflux to be 100% sure. She has only seen this a few times, but its also a give and take situation. with my centrals I may have to put up with a bit of other issues. Shes liking my numbers, but till she gets my card in hand she can not view any of my reports due to software on the ASV being so new. I was told to reduce gassy foods, and avoid spice, and caffeine, and told to stop my Zantac 300s and put on 40mg of Prilosec a day. I do feel the 12 cm is a bit high, and i have seen it jump as far as 16-18 cm if I inhale deeply and will get hit on the next inhale with a blast. But fooling around last night when i sit up I dont have the problem, or if I lie on my back. its when I am on my side I can feel it happening. I do have a cervical altering pillow with 2 different neck supports on each side, maybe I will try my standard firm pillow tonight when I am on my side. I am unable to sleep on my back for very long at all. So hopefully we can sort this out, Im so bloated lately with air and my gut so tender, I am on my last belt notch and my jeans that were loose a month ago are getting pretty snug and I have only gained a few pounds..let the waiting game begin again.
EPAP Min 6, Max 12, PS Min 6, Max 14, BURR 10, Press Max 25, BPM 11, Ti 1.2

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Re: One month down on ASV some good and now some bad.

Post by chunkyfrog » Thu May 11, 2017 4:15 pm

To get an earlier appointment, (and a little less brush-off).
it helps to mention that you don't know how long you can live like that.
I did it once--never needed to again.
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RestlessinWoolley
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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Thu May 11, 2017 4:23 pm

With this clinic and this appt in June is my 60-90 Day compliance check (Round 2). And trying to get in earlier is near impossible. For new patients they are booked into December already, and for followups well into September. I did just get a message where she might send me a new card, and I mail her my card. I'm not to worried about it other than the pain and discomfort, but i've lived the last 20 years in 8/10 pain from my condition, so whats another month anymore. Maybe the GI emptying test will uncover something, but I am leaning on pressures. But again where di I draw the line when it comes to having this new issue vs having central events all night long.. will see what the sleep doc does. Anymore lately its been a totally fix one things and a new or old long dormant issue creeps back up. I do have a small Peptic Ulcer, and had nasty GERD for years. and Crohn's and Celiac Disease does run in the family as well. im to the point nothing surprises me anymore..
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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Fri May 12, 2017 5:38 pm

Interesting enough the sleep doctor, increased my iPap from 12 to 14. She wants to eliminate the few hypopneas I am still having . She's happy with my central counts now said I've had 6 in the last month apparently the machine didn't catch and correct. She's going to monitor it closely for the next week as well. She said she's never seen anyone have this issue on the pressure I am on still considering it a low to moderate pressure. Wanted to be sure my mask was fitting right and even suggested I seal my lips a few nights.

On my own accord I tried a few different positions and a different pillow last night and propped my head up a bit and I think I'll look into a cervical collar. There were a few positions I could feel air entering my belly in and last night my allergies we're in full gear as well so I was having a hard time breathing as well thru my nose.

Other then my reflux being horrible this morning, gas was a bit better and I was only belching acid till I drank my morning fizzy water. I have my Gastric Emptying test Monday morning.

She did contact my clinic and get the test results and agrees that the new ASV is only partially to blame, as I did fine on normal CPAP with pressures up to 10cm. And also as compromised as my system is that it just may take a bit more work to get things figured out. And it only uncovered a long existing issue that now has come back since I'm.getting more than 5 hours of sleep a night now without waking up. I did used to have nasty reflux years ago with a diet change I reduced and it would wake more or keep me up at night but it kinda went away about the time my insomnia got really bad.

So I guess will see what shows up if anything.
EPAP Min 6, Max 12, PS Min 6, Max 14, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Fri May 12, 2017 9:15 pm

I was diagnosed with GERD with no real tests back in 2004. I changed my diet and avoided trigger foods and it mostly went away. I was diagnosed with a small peptic ulcer and GERD confirmation and some erosion of the esophagus in 2006 after having a bad flat up. I was on Nexium from 04-06. When they saw the damage I changed my diet again, and put on Prilosec 10mg. Fast forward to 2009 I was having little problem till i landed in the hospital on new years eve, and had a few drinks, and passed out. Woke up in the hospital with the most vile heartburn I'd ever had. I had passed out from an unknown reason now we know I was having seizures. Anyway after a pill swallow and an endoscopy they said the Prilosec wasn't working anymore and out on Zantac 150 to start and another 150 if I had any issues. Till today it's been working fine while still watching my diet. When I saw the GI he said he wanted me back on Prilosec as he was pretty sure my ASV wasn't the issue and I was having GERD flares again, and my sleep doc is on the same page other then she has seen high pressure cpap and Bipap may cause heartburn in some people. Well anyway I had to take my Prilosec at 11am today and I cannot take my prilosec or zantac till after my test Monday and had a non spicy burrito for dinner and I have the worst heartburn I've had in ages. My throat is so sore and burning right now my voice is horse. And I got to last till Monday now. Yikes. So something is really up in my throat and the sleep doc is probably right that my CPAP just brought it back to the surface.

Im not looking forward to the test prep. An egg salad sandwich and milk. Two of my trigger foods. They understand that they are but said that's a good thing. Plus I warned them that both make me gassy and bloated. So fun times ahead.

I haven't tried Prevaced.
EPAP Min 6, Max 12, PS Min 6, Max 14, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Sat May 13, 2017 9:38 pm

if you look back thru my posts xxyzx, this would be the 3rd Machine i've been on, 5th counting rentals since December. I need the ASV to take of of some nasty centrals i have due to long term narcotic, and opiate pain medicine use. I never abused any meds. I could say this started 20+ years ago as my pain started and docs couldnt figure stuff out for my pain before finding the tumors. I was on such heavy doses of meds, Vioxx, Celebrex, NSAIDS, Ibuprofen and Tylenol. I cannot take any of it anymore. It causes severe GI issues, internal bleeding, and some of the worst pain imaginable. once I sorted my diet out and got on something that worked ive been okay as long as I stay away from trigger foods, and oddly spicy foods dont bother me as long as its pepper spice and and not tomato or vinegar based. Milk, cheeses, eggs, ice cream, give me gastric distress as well, They are looking into an alternative for me to eat the contrast for the test monday. That is all I need is to be passing gas, and sick to my stomach for the 4-5 hours I have to pass sitting in a clinic.

As far as my ASV BiPap its going great on that side. 1.0 AHI average over 30 days vs 8-12 Ahi over 90 nights on CPAP. 7 AHI on a BiPap, none were curing the centrals. I have very little OSA issues .

the last 30 years of my life has been non stop doctors. the last few years I have been off on disability, I am finally trying to deal with things for the longest time I was putting in the same basket as my chronic illness. My new Doctor has been the biggest help. I am working to be able to hopefully if all goes right be back to work by the time I am 40, and hopefully get another 15+ ears in of a career before my body starts shutting down again. Sleep Therapy was the first step, to cure the fatigue, so I can start working on getting my strength back, and trying to stay healthy for more than a week or so at a time. I am immunocompromised, so right now I have to work on getting my health back up to prevent it. One step at a time anyway..
EPAP Min 6, Max 12, PS Min 6, Max 14, BURR 10, Press Max 25, BPM 11, Ti 1.2

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TASmart
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Re: One month down on ASV some good and now some bad.

Post by TASmart » Sat May 13, 2017 9:53 pm

RestlessinWoolley wrote:if you look back thru my posts xxyzx, this would be the 3rd Machine i've been on, 5th counting rentals since December. I need the ASV to take of of some nasty centrals i have due to long term narcotic, and opiate pain medicine use. I never abused any meds. I could say this started 20+ years ago as my pain started and docs couldnt figure stuff out for my pain before finding the tumors. I was on such heavy doses of meds, Vioxx, Celebrex, NSAIDS, Ibuprofen and Tylenol. I cannot take any of it anymore. It causes severe GI issues, internal bleeding, and some of the worst pain imaginable. once I sorted my diet out and got on something that worked ive been okay as long as I stay away from trigger foods, and oddly spicy foods dont bother me as long as its pepper spice and and not tomato or vinegar based. Milk, cheeses, eggs, ice cream, give me gastric distress as well, They are looking into an alternative for me to eat the contrast for the test monday. That is all I need is to be passing gas, and sick to my stomach for the 4-5 hours I have to pass sitting in a clinic.

As far as my ASV BiPap its going great on that side. 1.0 AHI average over 30 days vs 8-12 Ahi over 90 nights on CPAP. 7 AHI on a BiPap, none were curing the centrals. I have very little OSA issues .

the last 30 years of my life has been non stop doctors. the last few years I have been off on disability, I am finally trying to deal with things for the longest time I was putting in the same basket as my chronic illness. My new Doctor has been the biggest help. I am working to be able to hopefully if all goes right be back to work by the time I am 40, and hopefully get another 15+ ears in of a career before my body starts shutting down again. Sleep Therapy was the first step, to cure the fatigue, so I can start working on getting my strength back, and trying to stay healthy for more than a week or so at a time. I am immunocompromised, so right now I have to work on getting my health back up to prevent it. One step at a time anyway..
Restless, that is one scary story. Best to you and I hope Monday goes well for you!
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RestlessinWoolley
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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Sun May 14, 2017 8:09 pm

Never said I wasn't following what the docs want. It just finally took a new doctor that was willing to listen to me, early last year, to get started on figuring why no matter how hard I tried going forward, I was always stuck in reverse. granted I still have my good days and days I am flat on my back in bed. but they are slowly getting better. My Gerd has not bothered me until I started on the ASV last month, but from what I have been trying I think it just brought it back out again. I haven't been able to take any pain meds, or my reflux pills since Saturday now and I am a horrid mess right now. could hardly sleep last night as I was burping acid and bile up into my mouth. my throats on fire and anything I eat now tears me a new one. I dont think they will find much tomorrow on the emptying test, but wednesday during the ultrasound I hope they dont see too much damage.

I am living proof there are no simple solutions, between my Neurofibromatosis, my seizures, Osteo and Rheumatoid Arthritis my sleep issues, my GI Issues its never any fun, and my own fault for letting it go this long. Been to the allergist many times and it was simple, if it bothers you don't eat it. I have severe MSG allergies, sensitivities to Soy, Whey, Barley, Milk, Eggs, Preservatives, nitrates, some processed foods, Strawberries, and a bunch more. I have just adapted my diet to avoid these as much as possible. when they found the peptic ulcer that changed a lot of things. and what stinks i am only 37..

For the next week or so I will be taking both the 20 mg Prevacid and the 150 mg Zantac and slowly wean off the zantac, but still allowed to take it if problems arise, but if they arise too much he will double my Prevacid. I just started seeing the new GI doc, and hes a total 180 from the other doc in the same clinic i was seeing. He wants to figure it out, and not cover it up like the other doc did.

During CPAP i never did have any issues, nor did I on the short week on Bipap with Backup, it only triggered with ASV Bipap, and now that I am mentally aware of it more I am really watching trying not to swallow air when I inhale. I caught myself a few times last night. now that I have become aware of it, the gas and bloating have lessened, but I still have a nasty sharp pain around the appendix area, it tested good, it just showed on the CT excessive gas in the area, and Between the Miralax and the endless popping of Senna I have finally been somewhat regular in the loo, even if it takes 3-4 days to have a BM. This is why the emptying test was ordered. too many years of pain meds have just messed my system up to the point where I may just have to start over on a clean purge and try again.

TASmart, thanks it hasn't been too much fun, but I am determined to keep going. its scary at times, but I just have to keep going. ive got many years ahead of me, and all I can do is hope for some sort of normalcy. I will never experience a pain free day ever again, nor will I ever see a 40 hour work week again, but I cant give up hope that somehow someway i can find normalcy.

One thing at a time anymore, fix one, move to the next. like I said its my own fault for not standing my ground with my old IM Doc and saying no this isnt normal, and I am tired of popping pills to fix it.. But when she said well its hard to fix it when all your blood work comes back okayish..LOL new doc was like WTF!?! what was she thinking! and right away he started checking things and digging deeper. SInce started seeing the new IM Doc, I have been put on Thyroid medicine, different BP meds because it was too low!, pulled me off my Statin Drug, Dug into my miserable headaches ive had for years, my GI issues, and more. MY last doc blamed it all on my NF and since my NF doctor never said anything about my blood work I was in agreement. I am currently without an NF Specialist, but I can assume the hard work my IM is doing the new specialist should be happy.
Other than maybe be shocked at the sheer number of tumors on my spine, sciatic and femoral nerves..and thank goodness none have yet to go cancerous..why I want to focus on getting healthier and sleep more, the sicker I stay and the less healing sleep I get, the higher the chances of Cancer and other heart diseases..
EPAP Min 6, Max 12, PS Min 6, Max 14, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

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Re: One month down on ASV some good and now some bad.

Post by RestlessinWoolley » Mon May 15, 2017 9:10 pm

Sleep Doctor is super happy with my numbers and my titration on the ASV so shes not wanting to change my settings. Saying its cleared up my centrals, and shes happy with the 3-5 Hypopneas that I do have, and all my other levels and sleep looks spectacular.

Gastric Emptying Test, what a miserable morning it was. eating a horrible egg salad sandwich at 8 am, that I fought my gag reflex eating it, and was given water in place of milk. 3 hours in problems were started to be noted. this was a standing test, one one minute pic every half hour to start for a few hours and one hour after that. I was there 5 hours this morning and by the end of the 5th hour, I still had 80% of the sandwich in my stomach. So its is definitely Gastro Paresis of some sort. and to make it worse, I was eating another meal, before I went to bed, usually an hour or so before lying down for sleep. so the food was on top of dinner, which hard hardly began to digest. I have been given healthy bedtime snacks, Oatmeal, crackers, water. stuff that will be okay but not add to the mass in my stomach. They also sow some issue looking back at the CT from 2 weeks ago, that apparently food is not moving thru the colon and getting stuck in the colon, so the Ultrasound wednesday is for that. I also had a significant amount of reflux as well even staying upright, so for the next month I am to take both the prevacid 20 mg and the Ranitidine 150 one in the morning and one in the evening as they do separate things till we figure out a way to cool my guts off..

AS far as the ASV BiPAP, it was just a fluke coincidence, that the little bit of air I was swallowing was causing the excessive gas and bloating. Said to just make sure I keep a good seal on the mask, and if I have to yawn to remove the mask,or lift it to help pressures..

Ultrasound Wednesday morning, and I stil have my endoscopy scheduled for next month.. all good ahead..
EPAP Min 6, Max 12, PS Min 6, Max 14, BURR 10, Press Max 25, BPM 11, Ti 1.2

"I hate the word 'Handicapped' and 'Disabled'. They imply that you are less than whole don't see myself that way at all". ~Aimee Mullins

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Re: One month down on ASV some good and now some bad.

Post by TASmart » Mon May 15, 2017 9:30 pm

Best wishes and good luck on the future tests.
All posts reflect my own opinion based on my experience and reading.
Your mileage may vary
Past performance is no guarantee of future results
Consult with your own physician as people very