need, or not need, cpap? - really confused newbie q

[johnspartanII]

So I have been having a heck of a time the past 6 months with a weird stomach problem nobody can diagnose. I've just been to the Mayo Clinic, I've had every GI test there is. They see the lining of my stomach is 'clearly irritated', they know my ferritin is below normal and my platelets are down to the 120's. I've got Hashimoto's and celiac, and those are pretty much under control. However, since the onset of this stomach thing - which I've tried treating with several proton pump inhibitors that did nothing - the primary symptom is major bloating. So bad that it makes taking a deep breath difficult. Because I tell all the docs that, they've done all the lung function tests available, and my lungs look fine.

Add the stomach breathing impairment thing to the fact that I've had bad allergies since I was a kid (fortunately the asthma I grew out of, it seems), with a lot of drainage, and ever increasing depression and anxiety - and my formerly reassuring sleep, which I never had a problem with even at times of the highest stress in my life, until the last year or so, has now become erratic. Now the anxiety is starting to crank off the charts at all hours.

My psych doc says "well, based on your first sleep study, it doesn't look too bad. You could be having those sleep disturbances because you are having a lot of depression/anxiety." I'm still working on getting this under control at the moment, with medicinal help & therapy.

The sleep doc (who ironically is also a psychiatrist in this case) says: "No, it's probably the opposite. You've got structural problems that are just exacerbating the the anxiety and depression you are suffering during the day because of your undiagnosable stomach thing."

I post this here because I'm hoping some of you CPAP-ers might have an opinion based on some of the data I've got here. I'd post it like some of you can, if I had a cool machine that did that, but all I've got is this photocopy of the report.

Here's some of what I got from the sleep doc:

male epworth score: 2/24
ht: 5'10" weight: (at time of test) 157 BMI 22.5

impressions: "The polysomnogram is diagnostic of moderate obstructive sleep apnea. During REM sleep he has repetitive obstructive breathing. Oxygen saturations did drop from 95% to 92%. There were no desaturations below 90% and snoring was minimal. With his recent difficulties staying asleep, and periodic claims of increase in body temperature at night, the apnea is likely responsible"

AHI: 10.9
Supine AHI: 13.2
RDI: 24.2
REM AHI: 26.1
NREM AHI: 4.3
Total Number of Apneas: 2
Total Numbers of Hypopneas: 52
UARS: .6

I've got more data on this piece of paper here if anyone's interested.

Seems to me the only way I can tell for sure if CPAP will help me is to just try it and see if it does anything.

Opinions? Yes, I know none of you are my doctor.

Thanks so much.

J

[Guest]

Try it. The right mask is everything. Get an APAP machine if you can. Presume you have insurance. However, possibility of swallowing air, if you're inclined, could increase stomach bloating. Try it anyway.
were you titrated?

[johnspartanII]

Thanks for the response.

If by 'titrated' you mean, they come try and put the mask on you to see what happens/adjust it, that would be happening later this evening if I go in.

I guess I'm so tired and confused about what to do now, i'm wondering if I should bother based on those scores (hence why I figured I'd ask you guys : )

I have very little experience with sleep docs or this data, and they didn't go "dude, you obviously cannot breathe well at all at night - get this or suffer the consequences."

You're right though, I don't think I could tolerate any more stomach bloating.

[Hawthorne]

In my opinion, you should go in and have the titration study.

It seems to me, from the data reported, that you have sleep apnea and would benefit by using a cpap machine.

[jnk]

. . . i'm wondering if I should bother . . .

Yes, you should. ("Bother," I mean, not 'wonder.' )

Read as much as you can on this site, starting with the info linked to in the lightbulb at the top of this page and the thread near the top of the main page about where a newbie should start reading.

Don't let the docs' chicken-and-egg discussion of what causes what delay your doing something to break the cycle of bad-sleep-and-associated-stresses. Your starting with doing something to improve sleep makes sense, so please follow through with getting your sleep and breathing as good as they can be so you can get the ball rolling in the right direction.

That will require that you end up with a machine that gives you efficacy data so you can make sure your PAP therapy is successful. In your case, you may also possibly benefit from getting a particular kind of machine--an automatic-titrating machine, an auto, so that your pressure can remain low part of the time. That may help to prevent further problems with bloating.

A LOT of us have "been there" as far as the depression/anxiety thing. Many of us have found that improved sleep has allowed us to do much better in that area. Some have even been able eventually, under close supervision of a doc, to gradually come off meds. Others have got by with a lower dose after a while. Some are still fighting that battle. But the thing to remember is that better sleep and better breathing while asleep can't hurt. It can only help. And it helps EVERYTHING!

You are likely to look back at this crossroads in your life and to think of this time as the start of a whole new direction. You will thank yourself then for your now having followed through with getting your sleep and sleep-breathing corrected.

All of us on this board are now a part of your support team through this. You are home. Let us be of help to you in any way we can.

jeff

[twokatmew]

Definitely go for the titration! It will yield more information and perhaps answer some of those wonderings for you. Further, APAP is a good suggestion, but it's not a done deal that you'll have more bloating. I had a little bloating one night near the beginning, and that's it. You can also use exhalation relief (get a machine with this feature!) which may help with possible bloating and lessen puffing air out the mouth.

Welcome to the board and much luck in your journey!

[roster]

.........
My psych doc says "well, based on your first sleep study, it doesn't look too bad. You could be having those sleep disturbances because you are having a lot of depression/anxiety." I'm still working on getting this under control at the moment, with medicinal help & therapy.

………….

The psychiatrist is an impediment to your mental and physical health. Get rid of him

.........
………

The sleep doc (who ironically is also a psychiatrist in this case) says: "No, it's probably the opposite. You've got structural problems that are just exacerbating the the anxiety and depression you are suffering during the day because of your undiagnosable stomach thing."

...........................

Well the sleep doc got that part right.

.........

...........................

Here's some of what I got from the sleep doc:

........
impressions: "The polysomnogram is diagnostic of moderate obstructive sleep apnea. During REM sleep he has repetitive obstructive breathing. Oxygen saturations did drop from 95% to 92%. There were no desaturations below 90% and snoring was minimal. With his recent difficulties staying asleep, and periodic claims of increase in body temperature at night, the apnea is likely responsible"

AHI: 10.9
Supine AHI: 13.2
RDI: 24.2
REM AHI: 26.1
NREM AHI: 4.3
Total Number of Apneas: 2
Total Numbers of Hypopneas: 52
UARS: .6

..............

If I were given that diagnosis I would be in a big hurry to get a titration study and a prescription for a CPAP machine.

Very important: Make sure you do not accept anything less than a “fully data capable” machine which you can buy software for. You are going to need this to monitor apneas, hypopneas, flow limitations, snores, mask leaks, and pressure.

BTW, the patients who are members here saved my life. The incompetence of the sleep medicine profession is nearly universal. The profession is still in its infancy.

Good luck,

[roster]

.......... Some have even been able eventually, under close supervision of a doc, to gradually come off meds. ......

Yeah, under close supervision of a doc. That's what I had to do to get healthy: closely supervise the damn docs who are doing a sorry job with depression/anxiety which is caused, maybe 85% of the cases, by sleep disorderd breathing.

As far as the meds, I put all the bottles in a big brown bag in the bottom of my cabinet and marked it "Failures". I will keep it there as a little reminder.

CPAP is my medicine.

[rosiefrosie]

Have you removed all gluten from your diet? It is amazing all the foods that have gluten in them. Just a though as to your stomach problems. I think you should get titrated also.

Rosie

[jnk]

.......... Some have even been able eventually, under close supervision of a doc, to gradually come off meds. ......

Yeah, under close supervision of a doc. That's what I had to do to get healthy: closely supervise the damn docs who are doing a sorry job with depression/anxiety which is caused, maybe 85% of the cases, by sleep disorderd breathing.

As far as the meds, I put all the bottles in a big brown bag in the bottom of my cabinet and marked it "Failures". I will keep it there as a little reminder.

CPAP is my medicine.

I hear ya, rooster.

Some meds can't be stopped all at once, though, without serious risks. My wording was because I never want my words, or anyone else's, to be misunderstood to the point that a patient may decide all on his own to take the dangerous step of ending a medication suddenly that should be stopped gradually at a particular rate. Some have bumpy runways on take-off and landing and can do permanent damage if stopped abruptly. And I try to take into consideration the others, the 15% according to your numbers, who may need the meds, or other help, and just happen to also have sleep apnea. I assume such people are out there. And in here. So I was trying not to be too dogmatic. I know sometimes I overdo my attempts not to overdo.

Cool?

jeff

[johnspartanII]

Ok I'll go for titration. Are there people who appear to need CPAP though, that are just not helped by it (assuming they give it a good chance)? In those cases, is it because they have something that is just too severe? Or, alternately (as I've been sort of suggesting) that the problem is not severe enough to make any noticeable difference for a person?

Rooster: hm, 85%? Wow. I'm curious about that data. I have also been reading online at a few places, that a number of folks with depression/anxiety like myself who have been treated for a thyroid condition strictly with t4 have turned it around by swtiching to dessicated thyroid, instead. (But I reckon that's off-forum talk : )

Also: yup. I've been gluten-free for 6 years. Completely. I don't ever "cheat". At this point, the gi tests can't even detect that there was ever any sign in the lower gi from gluten damage (although I have never heard of a stomach problem, specifically, arising from gluten, doesn't mean it can't happen. I've been considering LEAP (mediator release) testing to see if that would lead anywhere).

I also eat zero dairy, and no yeast, either.

[jnk]

Ok I'll go for titration. Are there people who appear to need CPAP though, that are just not helped by it (assuming they give it a good chance)? In those cases, is it because they have something that is just too severe? Or, alternately (as I've been sort of suggesting) that the problem is not severe enough to make any noticeable difference for a person?

Rooster: hm, 85%? Wow. I'm curious about that data. I have also been reading online at a few places, that a number of folks with depression/anxiety like myself who have been treated for a thyroid condition strictly with t4 have turned it around by swtiching to dessicated thyroid, instead. (But I reckon that's off-forum talk : )

Also: yup. I've been gluten-free for 6 years. Completely. I don't ever "cheat". At this point, the gi tests can't even detect that there was ever any sign in the lower gi from gluten damage (although I have never heard of a stomach problem, specifically, arising from gluten, doesn't mean it can't happen. I've been considering LEAP (mediator release) testing to see if that would lead anywhere).

I also eat zero dairy, and no yeast, either.

My opinion is that anything that affects the quality of your sleep is a severe problem. And bad breathing in never a good thing, asleep or awake.

The evidence tends to indicate that even many of those who do not meet the criteria for being diagnosed with obstructive sleep apnea get great benefits from PAP therapy. (UARS patients, for example.) That seems to be much more often the case, from what I've read, than that a diagnosed person feels no benefit from successful PAP therapy. (With the stress on the word "successful.")

If you feel no tiredness or sleepiness during the day, then some might say you may not benefit as dramatically from PAP therapy as some others. But in your case, many others would counter that thought with the argument that the anxiety/depression counts as an indicator that you WILL benefit, as rooster has suggested with his comments.

jeff

[roster]

.........
Some meds can't be stopped all at once, though, without serious risks. My wording was because I never want my words, or anyone else's, to be misunderstood to the point that a patient may decide all on his own to take the dangerous step of ending a medication suddenly that should be stopped gradually at a particular rate. Some have bumpy runways on take-off and landing and can do permanent damage if stopped abruptly. And I try to take into consideration the others, the 15% according to your numbers, who may need the meds, or other help, and just happen to also have sleep apnea. I assume such people are out there. And in here. So I was trying not to be too dogmatic. I know sometimes I overdo my attempts not to overdo.

Cool?

jeff

That's why I don't mind spouting off here - someone always comes in with another side of the story. The forum is "fair and balanced" and I am the unfair and unbalanced part of that equation.

............
Rooster: hm, 85%? Wow. I'm curious about that data.
.........

The data comes from "Rooster Institute of Scientific Wild-Ass Guesses". I am optimistic that doctors are beginning to catch on. The group of family physicians that we use just added a sleep lab to their practice. One of the docs told me, "We have been treating patients for years for heart disease, stroke, diabetes, depression and anxiety. We put in the sleep labe to get to the root cause of the problems."

When I got my sleep study results, I called my therapist to tell him I have severe OSA and he is fired. The asshole admitted that if he sent all of his patients for sleep studies "50% would have sleep disorders". Well for God's sake, start sending them instead of having those damn useless chats about what screwed them up in their childhood that only starting affecting them 40 years later!

[DoriC]

Just using the guidelines that the medical profession uses, AHI should be <5.0 and most don't feel much improvement unless the AHI is under 2.0. While your DME is in a "switching" mood, try to get the APAP. As for the thyroid issue, there have been discussions about this topic here, so do a Search and you may get some good info on that. Do lots of homework here and good luck. Dori

[katiemo]

I had the very same stomach symptoms as you and the GP finally turned it over to a Gastroenterologist, they did a scope of my stomach and found the linning extremely irritated, he took a culture and found it to be a bacterial infection called Helicobacter pylori or h.pylori for short. I then underwent dual antibiotic therapy.