Miserable with bloating - new to CPAP and ready to QUIT!

bfmanning wrote:Linda3032 - hope I got that right...what is a CFLEX? I feel like a fish out of water with all of these new terms.

My insurance sent me to a DME company, (they were very unhelpful), and they issued me what I was "allowed" to have. Don't know if it is rented or purchased by my insurance? So far, I haven't had to put out any money. And I wouldn't mind putting out some $$$ if I got some choices about what I'm getting. Just haven't figured much out yet about any of this. Don't know what I should be trying to achieve, (except sleep)!

I think I have finally convinced the DME people that I need a humidifier. Already having nosebleeds in just 4 days. They are going to "allow" me a cold air humidifier. They said I would have to prove medical necessity for each improvement or change in the "bare bones" equipment that we are allowed.

I am usually a fighter...and if I can get some peaceful, (not painful) sleep, I'll fight the fight. But right now, I feel like "they've" got me between a rock and a hard place.

Searched for Aerophagia as was suggested. Whenever I choose a message to read through for information about it, I don't seem to be able to go back to the index of the Aerophagia search and continue reading for information about it. Have to keep starting all over with the "search". Anybody know what I'm doing wrong??

Thanks for all the help and support tonight. I very much appreciate it

Well, as we have told so many, not all DMEs are good ones. Bull crap on what "you were allowed to have"..... They gave you whatever they wanted to get out of their stock and what they had the highest profit margin on.

Cflex helps you exhale. A very good machine for you to have is a Respironics Auto with cflex. You should do very well on one.

And more bull crap on a cold air humidifier. Get a heated humidifier that fits right onto your machine. Insist on it.

Call your insurance company and see what they allow and what your co-pay is. Check to see what a brand new machine from cpap.com is. It's probably less than $800 and you would have what you want and need.

Tell (don't ask) your DME for different equipment and a heated humidifier --- or you will go somewhere else.

Insist on your rights - the ones you pay your insurance company for.

ooooooooooo, I get so angry at DMEs who take advantage of people.

BF, click on this link. This is the machine I was talking about. A halfway decent insurance company or doctor would allow you one of these:

https://www.cpap.com/productpage/respir ... ifier.html


Don't pay that DME anything until you are happy with the equipment he "allows" you to have.

Well--God bless you all! I appreciate the support VERY MUCH!

I have a wedge...will try to put it under my mattress right now...otherwise, I wasn't even going to try the CPAP tonight--not sure I should anyway?? I'm still in so much bloating pain--and it just keeps right at it...and it's been since 5 AM 06/13 since I last had that dang machine on my face!!

as tooly mentioned the condition is called aerophagia or the swallowing of air, pretty common with those starting out with cpap therapy. Antacids can and DO help with this condition once you understand what is happening and choose the right one.

If you have had untreated acid reflux for several years you may have a more difficult time with resolving aerophagia. Many don't even know they have Acid Reflux or GERD and some even deny it until its too late.

The problem (according to my GI specialist) is with the GERD and the LES or Lower Esophageal Sphincter valve which is located at the base opening to the stomach. This LES valve is like a little flapper valve, it's purpose is to prevent food and stomach fluids from flowing backwards up into the esophagus.

Over time left untreated the LES gets soaked repeatedly with stomach acid and eventually it erodes the little flapper on the valve away and the LES no longer seals completely.

With cpap, air pressure can now easily by-pass the LES and enter the stomach and lower intestine where it is extremely uncomfortable. Left untreated the condition only gets worse. With treatment, the valve CAN heal and repair itself (sometimes endoscopy surgery is needed to make the repair if it is badly eroded) but it takes time and usually a acid pump inhibitor like prescription strength PrevAcid is prescribed to speed the process along (usually 4-12 weeks) along with a special diet. Once your LES is allowed to heal it will begin to seal better and the aerophagia condition will go away.

Your doctor or GI specialist can speed things along with a script of PrevAcid or you can do NOTHING and continue to use cpap which will pressurize the esophagus and prevent the stomach acid from flowing backwards where the LES is allowed to heal naturally. Once the LES has healed, the aerophagia condition will go away on its own.

I've tried all the OTC antacids and most if not all the prescription version (I've had a bleeding ulcer the size of a tennis ball and gone to a GI specialist many times). The only OTC antacid I found that actually WORKED immediately was PepcidComplete (not PepcidAC or anything else, get Pepcid Complete with the red cap, berry flavor is the best tasting). PepcidComplete is expensive ($19.95) at costco for 85 Berry chewable tablets. If you go to a GI specialist they will give you PrevAcid in prescription form which is a acid pump inhibitor which turns off nearly all of the acid pumps ability to make stomach acid. There are side effects to using PrevAcid like allowing harmful bacteria to grow in the stomach etc. Untreated GERD is one of the leading causes of stomach cancer. If you have had untreated GERD for more than 5 years a GI specialist will want to do an endoscopy exam and biopsy to test for stomach cancer and presence of H pilori bacteria (along with checking for eroded esophagaus, LES and peptic ulcers).

Chew a Pepcid Complete tablet before bed and your condition will get better faster than without. You can also try the natural method that is eating a salad with vinegar dressing. Your GI specialist will frown on vinegar idea big time, but the idea behind it makes sense, add additional acid to the stomach own acid and it will naturally sense the extra acid and stop making stomach acid. Only problem is lettuce is hard to digest. But very thinly sliced vinegarette tomato slices chilled in the fridge are pretty good with salt & pepper and accomplish basically the same thing but are easier to digest.

Other things you can try that seem to help:

Elevate the head of your bed by 8-10", may seem weird but it works, it helps heal the LES and improves other edema conditions.
Lower your cpap pressure to 10cm (if you can 10cm clears more than 70% of SDB events anyway, so dropping 1cm isn't going to hurt you). You can always increase it back up, but the goal is to allow the LES to heal and allow you to get used to cpap. Once the aerophagia goes away you can increase it back up.

Extend your machine's Ramp timer to the maximum (on your machine that is 45-minutes). Suggest setting your starting ramp pressure to 5cm and the high to 10cm. When you start out, hit the On button, then the ramp down button machine should settle on 5cm and increase up to 10cm over 45-minutes. USE the included C-Flex feature, with your pressure at 11cm and using a setting of 2, your roughly at 9cm which is very easy to breathe against.

The only other option for you would be an autopap. The autopap would be set to 5cm to 11cm range, since it functions much differently than a cpap it would remain on a lower overall pressure and continually drop back down to 5cm which would help with the aerophagia condition. It may also have Cflex which would aid this even more. Based upon your pressure requirement, a bi-pap machine would NOT really help your condition much over that of cflex. If your pressure was higher, maybe but I doubt it.

When you talk to your doctor about it, go into it with knowledge then you'll get the response you need to resolve the problem (push for the Remstar Auto w/cflex it is your best bet for this condition). You can also check with your GI specialist. If your GI specialist suspects you have untreated GERD for the past 5 years, they will make you gargle with this really nasty tasting stuff, then knock you out for the endoscopy as your gag reflex will make a mess of things.

bfmanning wrote:Has ANYONE successfully gotten past the painful abdominal bloating?

YES! Been there. Done that. Earned the degree. There are only three things I know about that affect this for me.
1) APAP - This only works if your apnea is such that your pressure needs change during the night. (I only have apnea during REM so APAP helps me a lot.)
2) BiPAP - This works even better than APAP. This helps so much that I use constant pressure BiPAP now rather than APAP.
3) Body position - This helps some but not nearly as much as the other two. I've found that lying fully stretched out helps the most. Being in fetal position is the worst.

My recommendation to you is to save yourself a lot of grief. Get a BiPAP today, preferably the Respironics BiPAP-auto. (BTW, as many here will attest, I have no vested interest in Respironics. I've criticized them extensively in prior posts. I'm just an apnea sufferer, same as most here.)
The BiPAP-auto is far-and-away the best BiPAP machine available, and it is priced competitively. You won't have any trouble getting insurance to pay for it if your doctor justifies it on the basis that you couldn't tolerate CPAP therapy.

Also, your pressure is not too low for a BiPAP. Mine is even lower than yours, and I use the BiPAP-auto.

Good luck. Keep us informed as to how you are doing.

Regards,
Bill

Ditto to what NightHawkeye said, your pressure of 11 is not too low for bi-level. Mine was 10 for straight CPAP, complained of aerophagia to the doc, he wrote a scrip for BiPAP 12/8, and the problem went away. Used to be that on CPAP there were days I could barely concentrate for the bloating, now it's thoroughly fixed.

The anonymous guest poster gives some good suggestions and some misleading info.

Antacids DO NOT help with the aeropphagia unless the person has coincidental reflux. It only helps the dyspepsia, not the aerophagia.

The use of generic pepcid or zantac along with generic antacids are MUCH cheaper than the combined and very expensive product.

Prevacid and the other PPI drugs can have a very dramatic effect on reflux, but this comes with a high price. They can cause a rebound effect and after prolonged usage will actually be the CAUSE of reflux. Many will have to go on 2 a day and cannot get off them because of the rebound.
Nighthawks suggestion for APAP or BIPAP is absolutely correct.

Most people with reflux will have a dramatic improvement or cessation of reflux after starting PAP treatment.
Those on prevacid, nexium, purple pill BEFORE PAP usually will have to continue them because of the rebound.

There are several proposed mechanisms of how PAP causes the reflux to go away.

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CPAPopedia Keywords Contained In This Post (Click For Definition): aerophagia

You mentioned you wouldn't mind spending some $$$ if you got to choose...

If your financial situation allows this I suggest purchasing directly your equipment at CPAP.com. In my case this was less than my 50% co-pay that my insurance would have provided because CPAP.com prices are so much cheaper than what the DME charges.

This would get you what you want within a few days, and remove all the stress of the DME/insurance hassles. In my mind it is money well spent just to avoid the hassles.

GOOD LUCK AND HANG IN THERE...

BF,

Been there and done that also with the horrid stomache bloating. You've got some great ideas posted. I can say it does subside in time as your body stops fighting the pressure. My original pressure was 14 and then raised to 16. I had aerophagia on and off for awhile.

Now on to the DME and dr. Your doctor can write a script for a specific machine so see if he'll do this and be sure he includes a heated humidifier. A passover is well and good, but when my nostrils get dried out, I crank up my humidifier or I'm in pain from the feeling of burning nostrils. Your nose bleeds are a great way to "justify" one if need be. Be sure to call your insurance to see what they cover for durable medical equipment and what your co-payments will be. It may end up being cheaper to buy cheaper. I know the next APAP I buy will be online. Also make sure you find out if it's a rental and for how long. Mine happened to fall at a time where it was 2 months before the new year, so I had to then pay the deductable all over again. In other words, be careful on how your plan is set up. As to your DME, they are bound by what your dr. prescribes. If they give a stink, then call your insurance and see what other DME participates with your insurance. Ok it can be a lot of work but it's worth it. Think of a DME as a store. You are there to purchase an item. As long as your dr. has on the script a Remstar Auto w/heated humidifier, that's what you should be getting.

Best of luck. I agree with Linda on her suggestion of APAP. You may definitely find help with exhalation using the CFlex.

Oh one other thing. Did you get a copy of your sleep study? If not, you'll want to get one for your records. See if the report states you had problems fighting the pressure. If that's on the report that should be a good way to justify an APAP or BiPAP to your insurance.

Melinda

IMHO, shouldn't your doctor be highly involved in all of this? If the doc writes the prescription correctly, and it is filled incorrectly, (s)he has some grounds for justifying the prescription. Especially if this doctor is one listed on your insurance, you should have recourse if your doctor is not providing the accepted standard of care.

Think about it: does the pharmacy just decide to give you a different drug when you bring in a prescription? Do YOU have to deal with your insurance company directly to justify a need when a prescribed drug is not working? One should hope not.

Your doctor should be evaluating the causes of this bloating.

I think that if your doctor is not caring for your very serious problem, that you should be his/her most frequent caller. If this doesn't work, this is NOT the doctor for you. Drive for hours and hours if you need to--but get one who is providing good care.

Best wishes and remember: The assertive bird gets the worm.

APAP is an Auto Cpap. These can be used as a straight Cpap or set to a range and then let the machine figure out what pressure that you need to prevent apnea events

Heated humidifier can be set to a heat setting so that on cold night you will still get humidity. A passive is like a swamp cooler, it is dependent on the heat of the room as to how much humidity you would get if any.

C-Flex is Respironics feature that decreases pressure during exhale. So like some don't.

EPR is from Resmed and it decreases the pressure by 3 until the exhale is done (I believe that is how rested gal explained it)

DME - Durable Medical Equipment provide (Evil DME's) people have had good ones and bad ones. You help a lot about the bad ones here from people seeking help.

Also if you look in the posts and see the CPAPopedia it will tell you what listings are available to look up.

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CPAPopedia Keywords Contained In This Post (Click For Definition): auto cpap, respironics, resmed, humidifier, C-FLEX, CPAP, DME, APAP

C-Flex works in both automatic and straight CPAP mode.

EPR work only when the machine is set to function in CPAP mode. Not when the machine is on automatic mode.

O.

[quote="tomjax"]The anonymous guest poster gives some good suggestions and some misleading info.

Antacids DO NOT help with the aeropphagia unless the person has coincidental reflux. It only helps the dyspepsia, not the aerophagia.

The use of generic pepcid or zantac along with generic antacids are MUCH cheaper than the combined and very expensive product.

Prevacid and the other PPI drugs can have a very dramatic effect on reflux, but this comes with a high price. They can cause a rebound effect and after prolonged usage will actually be the CAUSE of reflux. Many will have to go on 2 a day and cannot get off them because of the rebound.
Nighthawks suggestion for APAP or BIPAP is absolutely correct.

Most people with reflux will have a dramatic improvement or cessation of reflux after starting PAP treatment.
Those on prevacid, nexium, purple pill BEFORE PAP usually will have to continue them because of the rebound.

There are several proposed mechanisms of how PAP causes the reflux to go away.

Anonymous guest replied to my posting:
you have no idea what your talking about.
----------
What specifically are you referring to?
BTW, I do know what I am talking about and I put my own name to my posting.

You are the one with misleading info hiding behind "GUEST"
As a pharmcaist for 35+ years and a 9+ years PAP user and very frequent forum participant, I think I have learned something.

I do not post BS and off the cuff gratuities- cept on the humor threads and in response to BS.
write me and I can supply FACTS.
tomjax at yahoo.com