Love my new CPAP BFF but have awful gas pains

[ljyocom]

I'm brand new to CPAP therapy and I think I stumbled on this forum when I googled "CPAP therapy". My 12 days into my therapy now. First a little background as to why I'm on this therapy. For more than two decades my life and health has been a tremendous challenge. It started when I was 39 (I'm 58 now)..., On 12/31/92 I woke up unable to walk at all. It was about 3am when I got up to go to the bathroom. On my first step I fell to the ground because my legs gave out. Around 8am my husband took me to my chiropractor to get an adjustment because I thought I had a pinched nerve or something. As soon as the doctor took one look at me he wouldn't even touch me. He said he wanted me to go to the ER ASAP because he felt I had a stroke. I was doubtful, but was concerned why I couldn't walk so I went right away that same morning. I was checked out by a Kaiser neurologist who promptly told me I was suffering with a "complicated migraine", gave me a shot of something in my butt and told me I should see a difference in about 30 minutes and sent me home. Took no more than 20 minutes in his office. I went home and by 9pm I was no better. The next day nothing changed, so that evening I went back to the ER. They did a CT Scan but all looked good so they sent me home again. For the next two days I went back & forth to the ER with the same results. By 1/5/93 I got really upset so they did an MRI in the afternoon, by the time I got home (about less than 2 hours later) my phone was ringing when I walked into my house. It was Kaiser telling me I had to go to the hospital immediately. I was told on the phone that I may have MS. By the time I was back at Kaiser, they admitted me right away and told me that I had, in fact, had a stroke from a small tear in my vertebral artery. The tear caused a clot, disrupting blood flow (and oxygen supply) to the brain, causing what’s known as an ischemic stroke. That was just the beginning of my health problems. It took nearly a year to relearn to walk and I have weakness to the right side of my body. Six months later I was told that the MRI scan showed a tumor in my trigeminal nerve which I had surgically removed in Sept. of 1994. I was doing fine, going to work as a paralegal, taking care of my teenage kids and going through a very bad divorce. Around 2001 I began to notice that I was getting more and more tired. I loved my job, but was a real workaholic. Suddenly in July of 2003 I began these horrible symptoms of extreme high blood pressure, uncontrolled dry-heaving, vomiting, diarrhea, & severe head pain. This was happening weekly and several ambulance trips to the ER & admissions to the hospital. The doctors had no clue what was wrong with me so I was always sent home with diagnosis from IBS to CFS to Fibromyalgia, gastritis and was constantly being put on different drugs. By the last quarter of 2003 I had taken a medical leave of absence. I returned to work on 1/1/2004 with a reduction from 40hr work weeks to 32hr work weeks. Finally in Aug. 2004 I was laid off due to the many sick days I had taken. I haven't been working since and am currently on Social Security Disability. My symptoms continued monthly for years. My last hospital trip was just before I started CPAP therapy on 3/15/2012. In July 2008 I had a heart attack and had a stent put in. In Sept. of 2009 I was diagnosed with Renal Cell Carcinoma (kidney cancer). Fortunately, it was caught in its early stages so on 12/23/2009 I underwent Cryoblation surgery to have my tumor frozen. The doctor who told me I had kidney cancer told me I needed by entire kidney removed. I got a second opinion and am glad I went with Cryoblation.

Three years ago 3 of my doctors told me to do a sleep study. I did the study in a lab overnight and was told at my follow-up that I had OSA and that I needed to wear a mask & hose every night for the rest of my life. I was horrified and ran out of there as quick as my legs would carry me. In the last 3 years my health plummeted to the point I never got out of bed except to go to the bathroom. I barely took care of my personal hygiene because I was so weak, depressed, in chronic pain due to the brain surgery to remove the tumor from my trigeminal nerve resulted in my having trigeminal neuralgia which is a very painful condition. I have painful OA in my lower back & both knees that need knee replacement surgery. Because my primary physician (Dr. Christine Eros) pretty much scolded me when I told her I never followed through with the CPAP therapy because of vanity reasons, she told me my vanity will get me killed. She pretty much got the ball rolling for me and I decided what would it hurt as long as my husband supports me (which he does).

So here I am 12 days into my therapy and I have to say I can't believe the change that has taken place since starting this. The morning after the second night of my CPAP therapy something incredible happened. I thought I was having some kind of religious experience because I was bouncing around with sooooooo much energy that I was completely blown away. I had no clue it was because of the CPAP machine until I stumbled onto this forum and found that many people got this "burst of energy".

I'm so sorry for the length of my story, but I wanted to make sure you all knew my background. So here's where I need your help. For the last 4 days I've been waking up with horrific stomach pain, excessive gas & belching. The only way I'm able to relief myself is to lay on my back on my shower floor with my legs propped up on the glass and let the warm water fall on my tummy. This seems to release the trapped gas. Yesterday my husband called Sleep Data and they increased my air pressure from 10 to 11 remotely. However, this morning I still woke up with an extended tummy. Do you have any suggestions? I also readjusted my headgear by tightening the upper straps.

I have a Phillips Respironics REMstar Pro C-Flex+ Auto IQ; a System One Heated Humidifier; a ResMed Mirage FX for Her; and I'm not sure about the software. I don't know how to retrieve my data other than reading some numbers on my CPAP display.

I look forward to seeing a response to my question about the gas pains and if other "cpapers" experience the same thing. Thank you in advance.

[chunkyfrog]

It's called aerophagia.
It has been the topic of many threads here.
Often it just goes away, sometimes we have to work on it--

[Julie]

Do a forum search here for aerophagia and you'll find lots of information and help... good luck.

[ljyocom]

Wow thank you Julie and chunkyfrog for the quick response. I now have a place to start my research on aerophagia. I'm so glad to hear that these pains should go away.

[avi123]

[Pugsy]

Welcome to the forum. You found out the problem has a name and there are things to try to help ease the pain. It should get better but if it doesn't with your trying the various hints available please talk to your doctor about it.

Regarding software. You have a PR System One Pro CPAP with the Auto IQ thing.
You do have choices for software use. Please look in my signature line and you will find some links that will answer your questions about software.

If they increased your pressure remotely then you likely have a modem on the back of your machine covering the spot where the SD card slot is. There may or may not be a SD card in the slot.
It is easy to pop the modem off to see should you want to. If no SD card in the slot then any generic cheap 1 or 2 GB SD card will work. I got a Sandisk 2 GB card at Walmart.

If your computer has a SD slot already in it (like for digital photo SD card) then you need nothing else to use the software. If you don't have a SD slot then you just need a little card reader/adapter so that you can use a USB port. Again cheap generic is fine.

SleepyHead software works well with your machine and will give you more data than you know what to do with to start with.

[pianochick]

You have been through so much, but glad to hear the CPAP is working for you. For me, I cannot use the nasal masks or pillows for the very same reason as you, awful gas pains. Those pains would wake me up in the middle of the night and stay with me for a couple of hours in the morning. It was just too much, so I'm using a full face mask now. Big difference! Even using a chin strap with the nasal mask didn't help. Hopefully, you have a 30 day return policy with your mask so you can try a different one.

[Papit]

. . . So here's where I need your help. For the last 4 days I've been waking up with horrific stomach pain, excessive gas & belching. The only way I'm able to relieve myself is to lay on my back on my shower floor with my legs propped up on the glass and let the warm water fall on my tummy. This seems to release the trapped gas. Yesterday my husband called Sleep Data and they increased my air pressure from 10 to 11 remotely. However, this morning I still woke up with an extended tummy. . . .

For some time now, I too have experienced burping problems that may or may not have worsened since beginning CPAP (8 cm H2O pressure, EPR 3) three months ago. (I do have GERD/chronic acid reflux that was being treated first with Prevacid, and now with Nexium to see if the change in meds will better treat the reflux and help relieve the gasiness.) With the use of CPAP, my AHI has come down dramatically and my alertness awake has sharpened noticeably. My sleep doc decided today that because CPAP sometimes causes gas problems (aerophagia), we should also lower the pressure to 7 and monitor my burping symptoms. I agreed and we lowered it and now we'll see how it goes.

I'm puzzled as to why your doc has raised, rather than lowered, the pressure setting for you. I would look into that with him/her. It's great to hear that you've seen quickly some very dramatic improvement in your alertness and energy level. Once you get the gas issue worked out, I think you're gonna love the CPAP therapy. All the best. -- Papit

[ljyocom]

Papit, thank you for your response. I too asked why she increased the pressure from 10 to 11. She stated that my AHI was still reading high, thus the reason she increased the pressure. However, 2 days after she increased the pressure, the gas pains were worse than when the setting was at 10. The pain was intolerable so I called Sleep Data and they told me to come in right away and bring my equipment. She gave me a new mask, a full-face mask, the Mirage Quattro FFM-Small. She also explained that whoever increased my pressure was a mistake. She set the pressure to adjust automatically. The first night with my new mask was great. I woke up with a little stomachache, nothing like the past few days. Last night I slept awesome and long. As a matter of fact, I went to sleep early around 10:30pm & woke up a couple times to use the bathroom, but fell right back to sleep. By 5am I took the mask off because I felt wide awake. I laid back down without the mask and to my surprise I had fallen back to sleep and woke up nearly 3 hours later. That's the most sleep I've had in forever. However, we (ie. my husband & I) just learned how to retrieve my data. We don't know what all the numbers & charts mean yet, but when I did my sleep study it showed my AHI at 38.4 & Supine AHI at 53.0. But this morning we looked at my data since adjusting the air pressure to auto & using the full-face mask. My AHI this morning read over 41.

Because it's the weekend, calling Sleep Data for answers is not available. I'm confused why my AHI increased even higher than the original sleep study data. I had the best night of sleep last night, but according to my data, I'm still not breathing during sleep. Also my blood pressure this morning was very low, than usual, at 91/62 Pulse at 64. I'm concerned with this low reading because I haven't taken my daily BP meds yet and wondered if I should wait until tomorrow. I don't know, perhaps my BP is low because of the adjustments. I can't get a hold of any Sleep Care Specialist this weekend and wondered if I should be concerned about my high AHI & low BP readings. Do you think I can wait until Monday for the Sleep Data office to open? Otherwise, overall I feel terrific.

[Pugsy]

To avoid confusion later could you please change the equipment in your profile. The machine and humidifier you have chosen have been long discontinued.
In the Equipment drop down menu your machine is listed under the grouping that begins with "PR System One".....So the PR System One Pro CPAP with Auto IQ and the PR System One Heated Humidifier.

The AHI that you saw? Is it from the machine's LCD screen or is it from software report? The LCD screen is an average and a couple of really bad nights can take a while to have that average lowered by good nights.

If you don't have the software I suggest that you give SleepyHead a try.
What are the pressure settings? You mention a range..if the minimum is too low then the machine can't respond quickly enough to prevent the apnea events from occurring.
If you could post an image of SleepyHead daily detailed graphs from the most recent night we could have a better idea what is going on.
All you need to use SleepyHead is found in my signature line.

To post reports we usually use Screenshots of the report.
Here is how I do it.
Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

[ljyocom]

Thanks for the tip..., I just updated my equipment list. I got my AHI report from the Sleepyhead software not the LCD display. The sleep specialist adjusted my pressure to auto. I don't know the range or where to find it, but when I put the mask on I don't hit the ramp button. It automatically starts with an 8 on the LCD display. I don't watch the display, so I'm not sure how high or low the pressure goes. I do know that I don't have the gas pains since Thursday evening and I feel like I have been sleeping like a baby for the last 2 nights. That's why I'm shocked that my AHI number was higher than before the pressure adjustment and full-face mask. As for posting my charts to the forum, I'm not that computer savvy. I rely on my husband for the reports. He downloaded the Sleephead software to his laptop, but not mine. I will have him download it to my laptop and will try using your step-by-step procedure & post my report(s). We're still learning what all these numbers & charts mean. Thanks for your advice & quick response.

[ljyocom]

So my husband just gmailed my report for last night in a .jpg format. I noticed other people have posted their report chart picture(s) so I know that it's possible to post my picture report too. However, I can't seem to figure out how to upload the .jpg file in my post. Can someone give me the steps to do this so Papit can explain the chart readings for me? Thank you in advance.

[ljyocom]

[img][https://mail-attachment.googleuserconte ... 6y2PHV2S3w]

I hope the above url will give you my report. Not sure if I did this right.

[Pugsy]

Images of reports have to be hosted to a place where we can park them and then access them via the url address.
I use Photobucket (free) and the process I use is explained in my above post.
If you want to use Photobucket there are 4 addresses shown (each depending on how you wish to present the image)...copy the last address in the box and paste it here in your forum message.
There are other free photo hosting websites that people use but I don't know where their particular IMG url addresses may be listed.

[ljyocom]

Images of reports have to be hosted to a place where we can park them and then access them via the url address.
I use Photobucket (free) and the process I use is explained in my above post.
If you want to use Photobucket there are 4 addresses shown (each depending on how you wish to present the image)...copy the last address in the box and paste it here in your forum message.
There are other free photo hosting websites that people use but I don't know where their particular IMG url addresses may be listed.

I used Picasa 3 and when I clicked on the url address it took me straight to my report image.