wallowing in self-pity :( UPDATE pg. 4 doing better today

First, thank you all for your kind words and thoughts.

The migraine pain is manageable. But I've been in a foul and angry and deeply pessimistic mood all day long. Partly the migraine. And partly I don't know what. The unresolved anger I have over this diagnosis and the negative effects of xPAP therapy upon my personal and professional life are mostly bottled up and well managed on a day to day basis. But on a day like today, they get out and stuffing them back into the bottle is difficult.

Unfortunately bright sunshine and exercise both make my migraines worse. So today really was a totally wasted day of staying inside, in the dark and not succeeding in making me feel any better physically or emotionally. *sigh*

After supper I fell asleep in spite of myself several times in our recliner in the living room while hubby and I were watching three episodes of Mad Men. Hubby said he heard no snoring. But I did not wake up feeling any better than when I fell asleep and every time I fall asleep without the mask, I worry horribly about how many apneas and hypopneas did I have.

For those of you suggesting GERD (again): I've been doing the self-help guidelines with no perceivable difference unless supper is way too late. But tonight I asked hubby to go buy some OTC Prilosec since I thought running through a course of the OTC stuff would be a good experiment for seeing if GERD really is part of my aerophagia problem. And imagine my great disappointment when I opened the bottle and discovered they are horse pills that cannot be crushed or bitten. Nor can the capsules be opened and sprinkled on food unlike my depakote capsules. Who the hell designs a pill the size of a small zepplin for a syndrome that includes difficulty swallowing as one of its primary symptoms anyway? I'm in tears again because I genuinely have no idea how the heck I'm going to choke these pills down the next fourteen days. Are the prescription ones any smaller?

And I am absolutely sick of feeling like I will never, ever be truly healthy again: I am tired of taking four depakote capsules, one zyrtec, a melatonin tablet, a multivitamin, a calcium supplement, and a vitamin D every single day as well as using biotene mouthwash twice a day, biotene mouthwash ($$$) twice a day, a fluoride mouthwash once a day, and a sinus rinse (neti pot) once a day. And now I have to add the horsepill sized priolsec on top of everything else. Last summer prior to the start of this adventure, I would take the vitamin D daily and the calcium if I remembered or felt like it. Seasonal allergies were mostly dealt with by taking benidryl or zyrtec on an "as needed" basis when I really was sneezing my head off instead of every day from spring to summer. I know for many of you this complaint seems minor since you are dealing with numerous and serious daily medications. But this is the first chronic stuff either my husband or I has dealt with since he has been able (so far) to manage his slightly elevated cholestoral by diet.

And finally a special thanks for SU and newhosehead for saying what I most needed to hear:

SleepingUgly wrote:I feel for you. I honestly think that CPAP is hardest for those who functioned well prior to CPAP, and then have trouble adjusting to it. ...
I know this is a poor substitute for face-to-face support, but nonetheless, we're here for you.

and

newhosehead wrote:it must be so much harder for someone who was asymptomatic before beginning this whole merry-go-round.

Again, thanks so much to you my new friends and family on this most unwelcome of adventures.

And it's technically my bedtime. I'm exhausted but not particularly sleepy. Still have a good 20 or 30 minutes of "getting ready for bed" to do in terms of taking the depakote, preparing Kaa, dealing with my teeth (brushing and two mouthwash rinses), preparing the lips for the onslaught of exhaust flow that chaps them---particularly since I will have to adjust the straps on the mask ultra loose to prevent the migraine from restarting. And if I'm still up around 3:00AM, then I'll have to make the difficult decision about whether to use the Sonata. And, alas, skiing is over for the winter. God I hate the early part of spring when the only thing blooming are the dang maple trees.

robysue wrote:For those of you suggesting GERD (again): I've been doing the self-help guidelines with no perceivable difference unless supper is way too late. But tonight I asked hubby to go buy some OTC Prilosec since I thought running through a course of the OTC stuff would be a good experiment for seeing if GERD really is part of my aerophagia problem.

I'm sorry, robysue...I didn't make it clear in my post. It's not that I think treating acid reflux now would relieve your aerophagia. It's that I think there's a possibility that years of untreated nearly asymptomatic GERD may have already damaged or weakened an esophageal sphincter so that it can't close properly to keep air from entering your stomach.

Treating GERD now could prevent more damage. But if enough damage to an esophogeal sphincter has already been done, neither Prilosec nor other meds would be able repair it. It would have to be repaired by surgical means. Something to have a really good ENT check out.

Morning robysue.

Hope you're feeling better today.

I'll pass along my support and well-wishes, as well as a muffin-hug:

~~~~~~~hugs~~~~~~~~

(they look funny because muffins have no arms).

Did you ever scan your sleep study graphs?

At least anectdotally, depakote users have reported increased insomnia. And GI upsets. And if your "OSA" is really "UARS" as we have discussed previously, and UARS often has co-existing "Functional Somatic Syndrome" components, since you seem to be trying to acquire the complete list of FSS I think you can be Miss July in this year's UARS Calender.

I have curiosity to see your graphs to look at REM a little more closely, since your AHI was 0.0 in diagnostic. A little unusual for OSA.

rested gal wrote: I'm sorry, robysue...I didn't make it clear in my post. It's not that I think treating acid reflux now would relieve your aerophagia. It's that I think there's a possibility that years of untreated nearly asymptomatic GERD may have already damaged or weakened an esophageal sphincter so that it can't close properly to keep air from entering your stomach.

Treating GERD now could prevent more damage. But if enough damage to an esophogeal sphincter has already been done, neither Prilosec nor other meds would be able repair it.

That's a another depressing thought. It would have to be repaired by surgical means. Something to have a really good ENT check out.[/quote]That is a depressing thought.

And all I can say is that last fall when the ENT did the endoscope looking down thru the nose and the upper air way, he sure didn't mention anything about GERD. And yes, he knew I was on CPAP at the time. And not doing well on it.

robysue wrote:For those of you suggesting GERD (again): I've been doing the self-help guidelines with no perceivable difference unless supper is way too late. But tonight I asked hubby to go buy some OTC Prilosec since I thought running through a course of the OTC stuff would be a good experiment for seeing if GERD really is part of my aerophagia problem.

Well "IMHO", before combining medications, make sure you have the pharmacy guy run 'em through the interaction-checker. For example, while combining Prilosec and Depakote might be OK, Depakote and Nexium might not.

Hmmm, Biotene has some GERD-generating properties. Talk about knit-one, purl-two, unravel three.

Has peppermint, too. Have to dig up that Goel study.

NotMuffy wrote:Morning robysue.

Hope you're feeling better today.

I'll pass along my support and well-wishes, as well as a muffin-hug:

~~~~~~~hugs~~~~~~~~

(they look funny because muffins have no arms).

thanks

Did you ever scan your sleep study graphs?

At least anectdotally, depakote users have reported increased insomnia. And GI upsets. And if your "OSA" is really "UARS" as we have discussed previously, and UARS often has co-existing "Functional Somatic Syndrome" components, since you seem to be trying to acquire the complete list of FSS I think you can be Miss July in this year's UARS Calender.

Scanning the graphs is on my long list of to-do things that because of daytime problems with concentration and fog-brain is getting longer each day than shorter. "Functional Somatic Syndrome"---which is a fancy word for what?

I have curiosity to see your graphs to look at REM a little more closely, since your AHI was 0.0 in diagnostic. A little unusual for OSA.

AHI was not 0 in the diagnostic, but something like 3.9. Problem in the diagnostic is those "hypopneas with arousal" which were added to the RDI but not the AHI for reasons that neither the sleep doctor nor the PA has explained. The doctor merely glossed over such distinctions and said "You stop breathing 23 times an hour" at my one meeting with the man; the PA has told me she really doesn't know what criteria the lab (associated with the same doctor's practice) uses for scoring and that "they must been close to meeting the standard for 'hypopnea', but not quite due to the lack of a desat occuring." or some such thing.

robysue wrote:"Functional Somatic Syndrome"---which is a fancy word for what?

http://www.psy.med.br/textos/somatizaca ... dromes.pdf

And there appears to be a relationship between UARS and FSS:

http://doctorstevenpark.com/sleep-apnea ... e-syndrome

http://chestjournal.chestpubs.org/content/123/1/12.full

robysue wrote:AHI was not 0 in the diagnostic, but something like 3.9. Problem in the diagnostic is those "hypopneas with arousal" which were added to the RDI but not the AHI for reasons that neither the sleep doctor nor the PA has explained. The doctor merely glossed over such distinctions and said "You stop breathing 23 times an hour" at my one meeting with the man; the PA has told me she really doesn't know what criteria the lab (associated with the same doctor's practice) uses for scoring and that "they must been close to meeting the standard for 'hypopnea', but not quite due to the lack of a desat occuring." or some such thing.

OK, but I'm talking specifically about REM AHI:

Additional Data of Respiratory Analysis
There's a table that looks like this:

Code: Select all

Type                       NREM count     REM count     Total Count     Total Index
Central Apneas:               0               0             0              0.0
Obstructive Apneas:          14               0            14              3.5
Mixed Apneas:                 0               0             0              0.0
Hypopneas:                   71               7            78             19.6
Hypopneas w/ Desat:           0               0             0              0.0
Hypopneas w/ Arousal:        71               7            78             19.6
Apneas + Hypopneas:          14               0            14              3.5
Supine Events:                -               -             7             15.3
Nonsupine Events:            -                -            85             24.2

AHI = (OA + CA + MA + OH w/desat) per hour of sleep:
AHI NREM:  3.9
AHI REM:   0.0
AHI total: 3.5

RDI = (OA + CA + MA + OH w/arousal + OH w/desat) per hour of sleep:
RDI NREM:  23.8
RDI REM:   17.5
RDI total: 23.1

Oh, and BTW:

robysue wrote:The doctor merely glossed over such distinctions and said "You stop breathing 23 times an hour" at my one meeting with the man...

If he said that then he's a LSOS.

NotMuffy wrote:Oh, and BTW:

robysue wrote:The doctor merely glossed over such distinctions and said "You stop breathing 23 times an hour" at my one meeting with the man...

If he said that then he's a LSOS.

Rather, your sleep continuity was disturbed 23 times an hour by respiratory events.

I'm sure if his opening line was that instead of "you stop breathing 23 times an hour" (and I don't believe that "it's only an expression" -- it's an inaccurate assessment of what actually happens), you might have had a different word picture in your mind.

OTOH, you may have "stopped breathing" 3.5 times per hour, but even that needs to be put under the microscope.

. But tonight I asked hubby to go buy some OTC Prilosec since I thought running through a course of the OTC stuff would be a good experiment for seeing if GERD really is part of my aerophagia problem. And imagine my great disappointment when I opened the bottle and discovered they are horse pills that cannot be crushed or bitten. Nor can the capsules be opened and sprinkled on food unlike my depakote capsules. Who the hell designs a pill the size of a small zepplin for a syndrome that includes difficulty swallowing as one of its primary symptoms anyway? I'm in tears again because I genuinely have no idea how the heck I'm going to choke these pills down the next fourteen days. Are the prescription ones any smaller?

My Losec (which is prescription here)were tiny little things that are hard to find when dropped. The generic version are small gell caps.

Migraine is neurological, it changes your thinking ability. I know that writing code is much more difficult when I have one, logic is affected, the ability to multi process is affected so please put all your negative attitudes aside, they are the migraine talking, wait to revisit this 2 days AFTER the migraine because even the next day when the pain is gone there are after effects.

NotMuffy wrote:

NotMuffy wrote:Oh, and BTW:

robysue wrote:The doctor merely glossed over such distinctions and said "You stop breathing 23 times an hour" at my one meeting with the man...

If he said that then he's a LSOS.

Rather, your sleep continuity was disturbed 23 times an hour by respiratory events.

I'm sure if his opening line was that instead of "you stop breathing 23 times an hour" (and I don't believe that "it's only an expression" -- it's an inaccurate assessment of what actually happens), you might have had a different word picture in your mind.

OTOH, you may have "stopped breathing" 3.5 times per hour, but even that needs to be put under the microscope.

NotMuffy: That's the source of my unresolved ANGER with this sleep doctor: He explicitly told me I "stopped breathing" 23 times an hour---as if I were an idiot who could not parse the difference between "respiratory disturbance" and "quit breathing" and as if I would not comprehend that 23 respiratory disturbances an hour warrants treatment. He also only briefly waved the summary graphs under my nose at that meeting and then snatched them back away from my sight: So at the time of the appointment, I did NOT see the graphs long enough to parse what my actual reported AHI and RDI were. And at the time of that meeting I did make the assumption that the vast majority of my events were apneas (not breathing) rather than hypopneas (problems with breathing). I only got the hard copy of the study after bugging his receptionist by phone for over a week and basically telling his office staff that I would not give them the name of a DME for them to fax the prescription to until I had both the sleep study report and a copy of my prescription in my hands.

The PA, on the other hand, has given me my own copy of the subsequent sleep study reports up front at the beginning of the appointment. And while she's not been able to explain what the heck the practice's sleep labs mean by "hypopnea with arousal" she's also been clear to describe my problems as "SDB" and "respiratory disturbances" instead of just glossing over a distinction between "not breathing (at all)" and "having trouble breathing".

robysue wrote:And all I can say is that last fall when the ENT did the endoscope looking down thru the nose and the upper air way, he sure didn't mention anything about GERD. And yes, he knew I was on CPAP at the time. And not doing well on it.

My ENT said the endoscope did not go down as far as the esophogael spincter. I had to go to a gastrointestinal doctor for a lower scope. They had me do some swallowing tests where I swallowed some radioactive (I think that is what they called it) oatmeal and sat up until it went down to my stomach and then laid down and watched it on the screen come right backup. I didn't believe I had GERD until I saw that.

I truely empathize with your aerophagia. The air does not stay in my stomach, but rather passes right on through. It's sleep disturbing and embarrassing if I have to share a room with someone. I've actually had a cabinmate say "You know you fart a lot when you sleep?". I don't know how to adjust my leak rate for that.

The namebrand Prilosec OTC pills are smallish (certainly not horse pills), easily swallowed pink pills. I take two a day, per Doctors orders, and have them on autoship from Amazon.com, so I don't ever have to worry about running out. Buying them this way is cheaper than buying generic from BJ's or Sam's Club.

I'm glad that you are brave enough to complain about all of your problems because the solutions that people give you may be helpful to the hundreds of lurkers as well as the posters.

Hang in there, RobySue, we are all hanging with you.

Bev

Robysue, I can relate to your frustrations about pain. I can also relate to your frustrations about having unexpected health issues enter our lives. Like you, many of us on this message board attempt to intellectually SOLVE our problems away---as our coping mechanism of choice. I have also learned, the hard way, that accepting some of life's hard knocks--without harsh judgment of life's unfairness and uncertainty----is necessary for my mental well being. That is not to say that I try any less to cognitively SOLVE life's difficult problems. Those two coping strategies are not mutually exclusive. Rather they are synergistic...

I'm ecstatic to see you and NotMuffy are now exploring UARS as one possible culprit behind your unresolved symptomology. Support is what we need and get on this message board. Peer support is therapeutic to the mind and soul. Consider temporarily suspending your inner analytical critic---simply so that you may soak up all the warmth and well-wishes behind that support you require as so many of us do. Rather, don't solve anything for the time being. Take all the right and all the wrong suggestions people are offering as gifts, and emotionally flourish in those gifts of kindness. This is one place where we come for gifts of kindness when we need them. Thank you for all your gifts of kindness. Be sure to open and literally bask in every gift of kindness you find here. They will help you heal as they have helped so many of us heal.

But once you have received and basked in each gift of support, THEN be sure to allow your best analytical mindset to judge any possible relevance toward solving your physical-body problems. Remember that for every bad moment in life there are MANY more far better moments. And most of those moments passively wait
for our frame of mind to relegate as we see fit. Best wishes, robysue..

robysue wrote:And while she's not been able to explain what the heck the practice's sleep labs mean by "hypopnea with arousal"...

They're using the AASM Hypopnea 4B Rule, otherwise they'd have to call Hypopnea With Arousal "RERA".

Of course, if they did that, they'd also have to document that the RERAs, were, in fact, respiratory related, and not central (a product of perhaps disrupted sleep).

Why not ask the PA to get the data disks with the Physician Reader?