The Good, the Bad, and the Ugly: Three years later

I had a great Aunt who used to say "its a wonderful life if you don't weaken".

After reading about your journey I realized that although I have issues, I am blessed.

I pray your journey gets better and you can overcome all that has been handed to you.

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khauser wrote:The modern practice of specializing often makes it quite difficult when Dr. A is treating symptom 1, Dr. B is treating symptom 2, and it turns out the two treatments are counter-productive!

I strongly agree.

This was a huge issue back in spring 2011 in particular: The meds prescribed by headache doc #1 were triggering serious side affects that directly fed the insomnia, making progress in the First War on Insomnia very slow. Sleep doc #1 and his PA were not interested in hearing about the headaches and the meds being prescribed by the headache doc and their affect on my sleep and headache doc #1 was not particularly interested in hearing about how the meds were interfering with the CBT-I that I was working on at the sleep doc's office. However, headache doc #1's PA was interested in the interaction between the migraine meds and the War on Insomina. And it was headache doc #1's PA who was largely responsible for getting me out of the nasty hellhole I was in with BiPAP, insomina, and out-of-control migraines and it was her work with me during the summer of 2011 that finally lead to me actually feeling better on PAP by October 2011. But she transferred from working with headache doc #1 to a different doc around the end of the summer and I never connected with the rather simple minded PA who replaced her. (This talented PA actually works with my current headache doc and that fact was instrumental in why my psychiatrist pulled strings to get me switched from headache doc #1 to headache doc #2 last December. All three are part of the same practice and as a general rule, the practice frowns on patients switching docs if they specialize in the same thing.)

khauser wrote:You need to have ONE doctor be responsible for you as a whole entity. ... My favorite doctor is my Family Physician. (By that I mean his "specialty" is family medicine.) NOBODY gets to change my treatment without him hearing about it first ... that's MY rule.

and

DoriC wrote: It seems that you are clearly aware of all your medical issues but I agree with Kevin, there doesn't seem to be anyone who's really in charge who gets the whole picture. Our PCP is the Captain of our team, he knows us and our medical history better than anyone and on the rare occasions that we stray to a "specialist" on our own, we always get in trouble.

I agree that it would be nice if I had ONE doctor who was genuinely in charge.

Unfortunately, here in the Buffalo area, the specialists don't seem to respect the PCPs at all.

Case in point: My being fired as a patient by my first sleep doc was precipitated by my former PCP trying to act as a coordinator of care: I'd been frustrated for months by the sleep doc's office (both the sleep doc and his PAs) not properly explaining what the heck a "hypopnea with arousal" actually was and what might be the root cause of my OSA. I was at the PCP's office for something NON sleep related (a virus?? or maybe it was my spring allergies kicking in??), but I looked absolutely dreadful due to lack of sleep. The PA who was seeing me asked what the heck was wrong beyond whatever it was that had triggered the PCP visit and I broke down and explained just how frustrated I was with the sleep doc's office: I was not only frustrated with the lack of explanation of my sleep test, but I was also frustrated with the fact that at the time I had severe chapped lips from the PAP machine---as in bright red highly irritated skin all around my lips to the point where it was almost embarrassing to be seen in public. And I'd asked the sleep doc's PA for any ideas at all for dealing with the chapping and the fact it was being caused by the machine. And all the PA could suggest was OTC skin creams, all of which had petroleum jelly as the first ingredient. The PCP's PA assured me that they'd step in and let the sleep doc's office know that they needed to be a bit more forth coming with information AND the PCP's PA contacted a compounding pharmacy to make me a custom prescription petroleum-free and fragrance-free chapstick that worked wonders. I was fired as a patient at the very next appointment with the sleep doc's PA. And it was shortly after this incident that my relationship with the PCP started to sour.

On the positive side, however, the psychiatrist, my current sleep doc, and my current headache doc are all part of the same practice. And they talk to each other! Essentially the psychiatrist is acting as the coordinator of my care for these three things. And because the new PCP is the psychiatrist's PCP as well, the psychiatrist understands the need to keep the PCP fully informed and the role of the PCP in coordinating care. And the TMJ guy is happy to keep the others informed and he's always been willing to take into account how the meds and other therapies (including PAP) can affect the TMJ issues. The new medical team has been in place since April 2013. And all in all, the new team---the new PCP, the psychiatrist, the new sleep doc, the new headache doc, and the TMJ dentist---are working well together. And in time, as the new PCP gets to know my medical record better, I believe the new PCP will be able to become the Captain/coordinator of the my medical team.

And while my new medical team is working as a team, progress on my tangle of issues has been slow. But we're all on the same page now: The whole team understands and believes the insomnia, the headaches, and the TMJ issues (and anger) are all tied together in a Gordian knot. And things were really bad by the time the team was assembled. So the first task has been getting me stabilized in the sense of "not getting worse." That has taken a lot of time and some real effort on everybody's part, and unfortunately it's been the insomnia that's been the most resistant to stabilizing. (Hence the trial on Ambien every night.) But progress is being made on the TMJ front and the headache front. So there's hope from the whole team that I will be able to get back to feeling as good as I felt during the Summer of 2012.

So, in short, being fired from the first sleep doctor and later losing the relationship with the first PCP was a blessing in disguise!

Buffalo is a large city, so I know there is good medical treatment available there. I'm glad you at least have a good team this time around.

khauser wrote:So, in short, being fired from the first sleep doctor and later losing the relationship with the first PCP was a blessing in disguise!

Yes! Didn't feel like it at the time, but it really was indeed a blessing in disguise.

Buffalo is a large city, so I know there is good medical treatment available there. I'm glad you at least have a good team this time around.

Yes, its a large city, but it's also very provincial in many ways. Many (most?) of the docs here are old-fashioned in the sense of wanting their patients to be sheep ....

Robysue,

In case I haven't said so lately, thank you very much for your posts. I learn from you.

I would assume that some forms of hypersensitivity would bring on their own forms of anger, and I would assume that some forms of anger bring on their own forms of hypersensitivity. That chicken-egg question may not be answered by looking back for a single life event in your case, but I applaud your efforts to look for forms of trauma and stress than may be playing roles in your present situation, so you can continue figuring out where to direct your blows in your personal fight.

My heart goes out to the posters in this very valuable thread. I think all of you do a lot of good with the personal posts you make about your problems with PAP therapy--perhaps much more good than you imagine. I applaud all of you for your success in continuing the valiant struggle for better sleep and better life and sharing that continuing success with the rest of us. It is a testament of and testimony to your love of/for life.

-Jeff

Robysue,

I don't have much to add to what everyone else has said. I personally understand some of what you are coping with (the sick and tired of feeling sick and tired) --

I am keeping you in my thoughts, hoping you can find a way to get back to that good place you were in. It's worth working towards for sure.

robysue wrote: I suspect that it is a significant contributor to the oft quoted statistic that "50% of PAPers give up on therapy in the first year."

I think we should phrase this differently. We don't give up and compliance is a non-issue. The evidence is the massive time and/or money investments we make. It's just that for some of us CPAP causes problems or prevents us from exploiting it. Most people I see here are working hard and with discipline.

robysue wrote: I have no will power

I disagree, your history proves your will. A hot area of research right now is why people with chronic illness don't take all possible actions to help themselves. Turns out there are a lot of interesting answers like stress, distraction, etc, and not much of a correlation to laziness. In fact, some doctors are trying to use this information as part a big picture treatment strategy.

robysue wrote: ...problems with anger...

Sounds like you already know this related to both your health issues and your existing psychology. Since you are working on anger and have considered meditation (like myself), I would place a $50 bet that you cannot read this book without improving your temperament. No meditation required, just the act of reading the book. Yes I'm serious and will make good on the bet if you report back:
http://www.amazon.com/Lovingkindness-Re ... 157062903X

Regardless, I'm pulling for you.
FM

FM,

With all due respect, I feel you are missing the point. In my previous reply to Roby Sue, I had mentioned that is too bad that people who have a very tough time adjusting to pap therapy aren't studied to see what is going on. She agreed and then quoted the compliance statistic below.

That has nothing to do with giving up as many people try desperately to make it work only to not have any luck. I guess what I am saying is you can put all the positive spin you want on something but if a therapy isn't working not matter what someone tries, that is not going to change anything.

49er

FattyMagoo wrote:

robysue wrote: I suspect that it is a significant contributor to the oft quoted statistic that "50% of PAPers give up on therapy in the first year."

I think we should phrase this differently. We don't give up and compliance is a non-issue. The evidence is the massive time and/or money investments we make. It's just that for some of us CPAP causes problems or prevents us from exploiting it. Most people I see here are working hard and with discipline.

robysue wrote: I have no will power

I disagree, your history proves your will. A hot area of research right now is why people with chronic illness don't take all possible actions to help themselves. Turns out there are a lot of interesting answers like stress, distraction, etc, and not much of a correlation to laziness. In fact, some doctors are trying to use this information as part a big picture treatment strategy.

robysue wrote: ...problems with anger...

Sounds like you already know this related to both your health issues and your existing psychology. Since you are working on anger and have considered meditation (like myself), I would place a $50 bet that you cannot read this book without improving your temperament. No meditation required, just the act of reading the book. Yes I'm serious and will make good on the bet if you report back:
http://www.amazon.com/Lovingkindness-Re ... 157062903X

Regardless, I'm pulling for you.
FM

FattyMagoo wrote:

robysue wrote: I suspect that it is a significant contributor to the oft quoted statistic that "50% of PAPers give up on therapy in the first year."

I think we should phrase this differently. We don't give up and compliance is a non-issue. The evidence is the massive time and/or money investments we make. It's just that for some of us CPAP causes problems or prevents us from exploiting it. Most people I see here are working hard and with discipline.

As 49er points out, you're missing the point.

Most people who successfully adjust to CPAP actually do start to feel better in several weeks to a few months---if they don't give in the first month or two due to the newbie discomforts that come with the learning curve. And in this group of newly diagnoses patients, the idea of "just don't give up" is relevant.

But on this board there are a small number of us (including both 49er and myself) who never really feel much better on PAP than we did pre-PAP or it takes a year or more before we start to feel (marginally) better than we did pre-PAP. We are a small minority in the pool of OSA patients: We're compliant patients (in the sense of we use the machine as directed), but we don't get better and in many cases, our lives seem permanently and adversely affected by a treatment that does not lead to any improvement in how we feel, and in some cases leads to our feeling worse or much worse than we did with the untreated apnea. And our adjustment problems go well beyond the common "discomfort" problems many newbies face. The months (or years) long "adjustment problems" can and so negatively affect the Quality of Our Life. And yet no-one seems to be interested in studying that small group of patients who never feel much better and who never get to the point where they are truly "adjusted" to PAP therapy where "adjusted" means they no longer have any serious problems caused by the therapy.

And my point is: I suspect that there are a lot more people in the pool patients who "Just give up because the whole thing is not worth it" that would continue to struggle for months and years if they did remain compliant. And yet the focus in the medical establishment is on quick fixes: chin straps for mouth leaks; FFM for mouth breathing; marginally adjusting pressure for aerophagia; short term use of sleeping pills for cpap-induced insomnia; nagging patients patients to not drive as long as they continue to feel sleepy; and nagging patients to use the machine as directed. There is absolutely no real advice to someone who is compliant, but who's life has gone to hell after starting PAP therapy because no-one has bothered to study these patients.

Take me as a specific example: I was a fully functioning adult before CPAP who had NO problems with daytime sleepiness; for the first six months of therapy, I was a walking zombie who was literally afraid to drive for fear of falling asleep at the wheel. Pre-CPAP, I'd have short episodes of insomnia, usually tied to serious stressful events in my life that would resolve themselves in a matter of a few weeks without the need for sleeping medication. Since starting PAP, I've had TWO major months long wars with insomnia that have severely affected my life. The first stared within days of starting PAP therapy and lasted for just about a year. The second started last November. In between, I was (barely) getting enough sleep, but it was enough sleep. In three years of PAPing my sleep schedule has yet to stabilize into something resembling "normal". I'm lucky to get 6 or 6.5 hours of "time in bed" with 5.5-6 hours of sleep. Many of my friends and some of my family members continue to suggest that I just give up on therapy. I've even had two sleep doctors suggest that I consider just giving up.

So why do I stick with it? The short answer is: Hand and foot pain. Without PAP I sleep fitfully and wake up with serious hand and foot pain every morning. With PAP I sleep fitfully and wake up without the serious hand and foot pain every morning.

I feel as though I've become addicted to the damn machine: As three nights without PAP this summer showed, I no longer sleep any better without the machine than I do with the machine. But I still do not feel that I function in the daytime as well as I was functioning before starting PAP three years ago.

Robysue,
You're the best! Your posts are always so eloquent. I'm with you and 49er in the "pool" (drowning?). Anyway, you add a lot to these forums.

I know my situation is different, having a neuromuscular disease. I had told my husband that I would NEVER use machines to help me breathe. But when breathing issues came sooner than I expected, I agreed to be evaluated and underwent the sleep study. After my titration study, I was ASTOUNDED at the way I felt that morning. Tired, yes, but I felt I had more energy than I'd had in YEARS.

I said that *IF* using a CPAP machine was going to give me that type of energy boost, I was all in.

Here I am, almost 4 years later, and have only had a handful of days where I felt as I did after my titration.

And why do I keep trying? Because the look on my husband's face when I say I'm ready to give up. I half jokingly ask him on a regular basis to just shoot me and put me out of my misery. His "go to" responses are either "I'm not done with you yet," "No way am I breaking in a new one now!!" or my favorite "I'd have to get 2-25 year olds to equal you!"

No matter how tired, weary and just plain horrible I feel, he says he needs me around.

So, I keep trying.

We needja roun heah too. Jes sayin'.

jnk wrote:We needja roun heah too. Jes sayin'.

+ Infinity

robysue wrote:[ There is absolutely no real advice to someone who is compliant, but who's life has gone to hell after starting PAP therapy because no-one has bothered to study these patients.

I have a theory. I don't have an agenda or a beef, I'm just trying to think logically. Please don't pooh-pooh it fast, and maybe take some time to think about it before responding.

I had a talk with a doctor who told me that people who have OSA have usually started with hypopneas and have probably suffered those for a long time; a PSG would not pick up on it because they are under 10 secs. This has "damaged" the brain somewhat because your sleep is now not normal, with the brain constantly on "alert." So then the hypopneas start turning into OAs and a PSG picks up that you have a sleep disorder and you are prescribed cpap.

I suspect that most of the people who can't feel rested on cpap, like robysue and others, is because of a retracted lower jaw due to bad orthodontia like braces or extractions. Am I right?--to the people who have responded in this post? This information was included in my discussion with the physician and served as a preface. So cpap pressure serves as an "irritant" to the already hyper-alert brain and prevents deep and protracted sleep needed to feel rested. A bulky oral appliance with the cpap might be able to lower one's pressure, but to most, the added bulky appliance further keeps them from the necessary rest. What if one were to be able to advance their lower jaw--without too much distraction, for lack of a better word--and that this would lower pressure and the new lower pressure would be the "tipping point" which would allow one to get the refreshing sleep they need? Even if one didn't have the orthodontia, maybe someone's lower jaw was just set too deep and impacted their airway. I have a video that shows how extractions and braces cause the lower jaw to retract into the airway. I really think I'm onto something.