On the eve of my 53rd birthday, I thought it might be appropriate to review and reflect on what I've been through last year and my on-going Adventures in Hosehead Land.
Fifty-two has been a bad year for me all around: A year I would not wish on my worst enemy. In the past year, I've been diagnosed with moderate OSA, chronic insomnia, chronic migraines and migraine-related vertigo, and an MTHFR gene mutation; I am currently dealing with diagnostic testing for TMJ-related problems that go beyond the garden variety "get a night guard from your dentist" TMJD, and last week my eye doctor told me there are some worrisome changes in the appearance of my optical nerves compared to last summer's eye exam.
Since my 52nd birthday I've had something like 25 or 26 office visits to doctors, dentists, and my psychologist. And a full round of vestibular rehabilitation as well. I can honestly say I've never seen so many doctors, nurses, PAs, and medical techs of various sorts in any previous year---including the two years I was pregnant with my kids.
Since turning 52 I've been through four sleep tests; a full round of vertigo tests including a full hearing exam, a VNG test including a caloric test, a VEMP test, and a rotational chair test; a genetic test; a CAT scan of my semi-circular canals; and two MRIs---one of my semi-circular canals and the other of my TMJs. And I have a two-hour set of "chewing" tests scheduled for August for the TMJ stuff and a follow up full eye exam in November to see if there are further changes to those optic nerves as well as a specialized test for determining how wide my vision field is and whether there is damage to the optical nerve. The eyes are in "hurry up and wait" mode since the question is whether the changes really do indicate glaucoma even though my intraoccular pressures are still in the normal range according to three different pressure tests using three distinctly different instruments that were done during my recent eye exam. And one thing I've learned this year about myself is that I don't do "hurry up and wait" very well.
I can't imagine how much money I've cost my insurance company over the course of this year. And with the new developments on TMJ and the eyes, it's not at all clear when the medical expenses will start to abate.
And of course it's also been a very long year of dealing with CPAP adjustment issues: aerophagia, air-in-the-eyes-thru-tear-ducts, severe daytime symptoms that were NOT present before starting xPAP, and a monstrous case CPAP-induced insomnia. In the fall the vertigo became a significant quality of life issue; from January through early May the side effects of the prophylactic migraine meds prescribed to deal with the migrainous vertigo became the issue---even as the meds all did a very nice job of significantly reducing the vertigo; and the return of Spring with its Tree Pollen was even less pleasant than usual.
And of course, the whole point of all this therapeutic misery is, among other things, to make me feel "better". Which has been kind of tough since a year ago---on my 52nd birthday---I was feeling "decent enough" on most days with enough sleep to function (although I was not waking up truly refreshed) and mild enough headache, TMJ, and joint pain to mostly ignore on most days (although pain was there
all the time and my notion of "mild enough to ignore" had clearly grown through the years).
And How Do I Feel NOW?
Well these days, I can finally honestly say that on MOST days I now feel ABOUT AS GOOD and on SOME days I even feel BETTER than I felt last summer---before all of this started. And that's true even with the residual insomnia and my continuing resentment towards my body for having OSA (and migraines and TMJD) and my Kaa (for making my life so miserable for so long) and my new fear concerning my eyes.
I'm now sleeping pretty decently most nights albeit I'm typically not going to bed until sometime between 2:30 and 3:30 and I'm sleeping until sometime between 8:00 and 9:00. That means I'm in bed somewhere between 5 and 6 hours most nights; but it still can be as little as 4 1/2 hours in bed with less than 4 hours of sleep. Sleep latency when I go to bed this late is usually in the 5 minute range. If I'm awake for more than 10 minutes after putting Kaa on my nose, aerophagia starts to raise its ugly head. But as along as I'm genuinely sleepy I can get to sleep before that happens. When I go to bed this late, I typically only wake up 2--4 times and the wakes are usually short. So on a typical night I'm getting somewhere between 4 1/2 and 5 1/2 hours of actual sleep, which means that on my current crazy night owlish "schedule", my sleep efficiency is now consistently hitting 90%. And when I wake up for the morning, I usually have no headache and little or no hand or foot pain relative to pre-CPAP. And I usually feel rested and somewhat refreshed (physically) now upon waking---unlike I felt from the start of CPAP (in late September) through the end of May. Sometimes my body actually feels genuinely and FULLY refreshed, but I'm not yet sleeping long enough for my mind to feel more than "almost" refreshed even though it does feel rested most mornings.
Right now, if I try to go to bed at a more decent time, bad things still happen: Latency to sleep grows enough for the aerophagia to kick in and make me miserable at the beginning of the night. Or I wake up much more frequently. Or my wakes are longer and more restless. Or I simply wake up after 5 1/2 hours and can't get back to sleep.
And so for now my new sleep doc wants me focusing more on getting that total amount of sleep up to something that allows me to function well during the daytime rather than what time I'm actually going to bed or getting up. So there's no rigid bedtime or alarm clock for me anymore: I go to bed when I'm sleepy enough where I'm confident putting on Kaa won't be an issue and I wake up when I wake up. (Being able to do this all summer long is a nice benefit of being a tenured college professor.) Also the new sleep doc doesn't think I need to aim for the proverbial 8 hours of sleep each night, and I concur: Based on my pre-CPAP sleep habits and my pre-CPAP daytime functioning levels, my immediate goal is to get to where I can reliably sleep for 5 1/2 to 6 1/2 hours while being in bed somewhere between 6 and 7 hours.
Once I'm consistently sleeping about 6 hours every night, I think the residual daytime sleepiness, sleepiness behind the wheel, and the daytime brain fog and concentration problems I'm still dealing with on a pretty regular basis should start to fade for good. Of course then I'll have the delicate task of moving my sleep schedule to something that allows me to get to work on time once classes start again in the fall. Fortunately my chair knows what I've been going through and I've got a "late" schedule. So except for committee meetings, I won't need to be on campus much before 10:00, which is when my first class starts. Still, getting up at 9:00 won't work very well though when you've got a class that starts at 10.
But all in all, these days I can finally say
the insomnia is under control most of the time. But the cost of the insomnia war on my lifestyle has been great and I'm not sure I'll ever be able to relax my current vigilance about sleep hygiene very much:
- Caffeine? None after 10AM---not even decaf coffee or tea most days because I know they've got enough residual caffeine in them to keep me up even later than I'm already staying up. And I'm still working on finding a viable alternative to caffeinated unsweetened iced tea when we're dining out.
- Sleeping in really late just because I want to? Not possible with Kaa on my nose.
- Naps? Only when the maxalt needs the help of a nap to zap a moderate to severe migraine headache.
- Alcohol? I have to carefully weigh the decision to have a beer, a glass of (white) wine, or a margarita with dinner when hubby and I want to celebrate some small victory.
- Eating whenever and whatever I want? Not if I want to keep the aerophagia under control, and if the aerophagia is not under control, I don't sleep. *sigh*
- Falling into bed spontaneously? Not with doing the neti pot thing, making sure Kaa's humidifier has water, putting Kaa back together, taking the nightly vitamins (the second dose of the B2 and the magnesium), brushing the teeth, and remembering the flonase. The days of brushing the teeth and falling into bed seem like a far off dream these days.
And snuggling with hubby? We're working on it, but it's still a problem and I still resent not being able to caress my husband and talk to him each night after he's dropped off to sleep but I haven't. And lying in bed without Kaa on my nose for any period of time remains problematic for me: The fear of falling asleep without Kaa is great and two-fold: On the one hand I worry about what the apneas and hypopneas will do and on the other hand I worry about my ability to force my self to mask back up the next night if I actually slept decently enough without Kaa.
The comfort issues of dealing with Kaa seem to be under control most of the time. Aerophagia is still a problem now and then---but the days of waking up with a basketball in my stomach seem to be behind me. The lips are still somewhat chapped much of the time, but the custom made prescription lip balm keeps the problem manageable most of the time. Leaks have never been a huge problem, although as I seem to be mentally relaxing about the whole notion of sleeping with Kaa, I seem to be having a bit more problems with leaks. Last week I even had the PR S1 register a one minute long Large Leak---the very first time I've ever seen a Large Leak in close to seven months of using the dang machine. SleepyHead showed the leak got up to about 55 or 60 L/min. I'm not quite sure what caused that leak in particular or the slight uptick in evidence of leaking overall. It could be that I need to get back into the habit of washing my face carefully every night or at least every other night; I've gotten lazy and given into my facial skin's desire NOT to be scrubbed outside of the shower.
I still have nights where I'm in tears and crying and screaming about how I hate the whole OSA diagnosis and how I really hate what it's done to my life. I miss the spontaneity of my pre-CPAP life and I still find all the planning that dealing with xPAP requires deeply disturbs something very central to my core personality. The latest such outburst was on the night of July 6: I was not able to face going to bed until it was close to 5:00AM. And after 10 minutes or so with Kaa on my nose, I was feeling MORE awake and MORE angry and MORE resentful. And when the aerophagia started and when I could not get one of the nasal pillows to quit hitting the inside of my nostril, I lost it and threw a genuine bonafide hissy fit. Poor hubby helped me pick up the pieces (again) and insisted that I take a Sonata when the hissy fit was still going full strength at 5:30 or 6:00. I finally drifted off into a very troubled sleep with bad dreams (but a decent enough AHI) at around 7:00AM---at least an hour after I took the Sonata. And I managed to sleep only until about 10:30 or so; first time in a long time that my usage was less than four hours. (The only times when my usage is less than four hours is when I spend less than four hours in bed trying to sleep.) Fortunately the frequency of these hissy-fit nights is diminishing and I'm looking forward to having them disappear altogether although I'm not brave or foolish enough to make a prediction on when that might happen.
My AHIs are currently bouncing all over the place: I'll have a night or two with an AHI below 1.0 and then a night or two above 3.0, with lots of nights between the two. I still get alarmed when I see an AHI of 3.0+ or when I have a total of 12 or more OAs during the night. But by tracking how I actually feel each day on a log that's independent of where I record my apnea data, I've begun to realize that there are many other factors in addition to the AHI and the sleep efficiency numbers that have significant influence on how I feel each day both mentally and physically.
Most notably migraines (and vertigo) and TMJ pain have strong and negative influences on how I feel each day. As does joint pain. Allergies are less of an issue now than they've been in the past---but that's because I've learned to take a zero-tolerance towards nasal congestion: It's the only way I can really tolerate sleeping with Kaa comfortably. And the added benefit, of course, is that I'm learning how nice it is to be able to breathe freely instead of sniffle my way through each summer day. That's not to say I don't have bad allergy days, but the zero-tolerance policy with it's careful attention to nasal hygiene is letting me have many, many more sniffle free days than any summer I can remember.
The migraines have been touch and go recently. But the combination of the Deplin, the megadose of B2, and the extra magnesium has definitely reduced the level of severity of my migraines and vertigo. And there's some evidence they are also beginning to reduce the frequency of the migraining. My overall mood has improved substantially since starting the Deplin; eemotionally I feel much more normal for the first time since I wandered into Hosehead Land. And that's been a welcome relief from the kinds of mood alterations I was dealing with on the topiramate, lamictral, and depakote. Given the dark and frightening moods I experienced on the lamictral, I can now begin to understand just a bit what it must be like to suffer from a mental illness.
The TMJ pain has been steadily increasing this past year. The night guard that was made in April is showing signs of serious wear and tear, but it continues to allow me to wake up TMJ-pain free each morning. For reasons that I don't fully understand, I've begun having problems with significant levels of pain in the daytime. On the worst days, the TMJ-pain can rival that of my worst migraines. And a double-whammy headache really knocks me out.
Hence Monday's consultation with a specialist in TMD and orofacial pain. After doing a very thorough exam, he said he believes there are muscle and ligament problems on both sides, that the right side of my jaw is essentially dislocating itself every time I open and shut my jaw, that my jaw pulls to the left side a bit, and that over time my muscles have literally grown so so tight that the vertical distance between the tip of my nose and the tip of my chin has actually shrunk in size through the years. And of course all of these things contribute to the pain. If the testing doesn't turn up anything unexpected, the TMJ dentist believes a more specialized guard worn appropriately should address my pain and problems. The new guard will encourage me to keep my jaw in a better position and the better position will help stretch out those muscles and ligaments, which in turn should help the right side of the jaw to quit dislocating itself all the time. It was a relief to me to hear the guy say that for his specialized practice, my problems are actually pretty straightforward. And another relief to hear the paperwork person say that my health insurance should pay (fully) for the testing and the oral appliance.
For the time being, he's told me to wear my current guard in the daytime as well as at night and that does provide me with substantial relief from the pain: With the guard in my mouth during the daytime, the TMJ-pain vanishes entirely (on good days) and almost vanishes (on bad days). And days without TMJ-pain are as good or better than days without migraines.
The hand and foot pain I had upon waking most mornings pre-CPAP disappeared entirely in February and March. But since April, the pain has come back on an intermittent basis. Pre-CPAP I would often wake up with my hands clenched into fists---something that I now realize may indeed have been an OSA symptom---and my feet curled rather tightly (think of a foot fist if you can). As you can imagine, sleeping with hand and foot fists encourages a fair amount of hand and foot pain---pain that had been routinely diagnosed as "mild arthritis" of an unspecified type. The first and so far
best thing that xPAP has done for me---in terms of the
How do you feel? standard---is to eliminate this source of pain. At least most of the time. But I have noticed that since my spring allergies returned, I am once again waking with this sort of pain on mornings following "rough" nights---where what triggers the description of "rough" can include any of the following:
- the insomnia acting up----in one or more of the following ways: more wakes than normal; more restlessness at one or more of the wakes than normal; a longer latency to sleep; or an extremely late bedtime---as in first getting to bed after 3:30 am;
- migraine symptoms during the night---while I seldom wake up with a migraine headache, I sometimes experience migraine auras when my eyes are closed;
- disturbing dreams---the frequency of bad dreams has not really changed since my pre-CPAP, but a bad dream does cause the clenching;
- nights where my AHI is particularly high---as in above 3.0 or 3.5 and particularly when the AI is high enough for there to be 15 or more OAs over the course of the night;
- and of course, the "hissy-fit" nights where nothing goes right when I try to mask up and I wind up loosing it (again).
I'm still dealing with more brain fog and more EDS on a more regular basis than I ever I had pre-CPAP. But even those issues are beginning to resolve: On my best days, they're no longer issues; on my typical days, the brain fog is there, but not overwhelming and the EDS is mainly confined to the evenings when we watch TV--but as soon as the TV goes off, I wake up. On the bad days, well, let's not talk about the bad days since they are becoming rarer. Likewise, my daytime energy has more or less returned to pre-CPAP levels on all but my worst days. And as I noted earlier, my mood has returned to normal since starting the Deplin, which is nothing more than a really massive dose of the metabolized version of folate/folic acid. And it's good to have my innate optimism returning.
And in reflecting back on my (mis)adventures with Kaa this year, I'm amazed at all the things I've learned or relearned:
- You won't feel any benefit from xPAP therapy if you're not actually managing to get some decent quality sleep with the mask on. And dealing with severe CPAP-induced insomnia means the sleep is not decent quality. So insomnia management is critical and I wish I'd had the strength to start the CBT much, much earlier.
- If other medical conditions are seriously affecting the quality of your life, adding CPAP won't be a magic bullet and it could make things (temporarily) much worse. Getting those other medical conditions under control seems to be necessary to fully benefit from xPAP.
- Doctors are like car mechanics: They want to "fix" the problem that they are trained to see quickly and then move on to the next patient/car; they don't like it when the "fix" doesn't fix the problem and they like it even less when the "fix" makes things worse. They also don't particularly like dealing with someone/something that requires thinking outside the box---at least the ones who are not in medical research.
- Doctors don't talk to each other and they're often shockingly ignorant of how the treatment they prescribe might adversely affect the treatment prescribed by another physician. And while your PCP is supposed to act as the conductor of your symphony of medical care providers, all those specialists don't have any respect for the PCP. And that makes it impossible for the PCP to do his/her job.
- I'm far too twitchy about being treated like an idiot who knows nothing by my doctors. I unfortunately now go into too many appointments with a "bad" attitude to begin with. As hubby keeps reminding me, the docs are people too and that I might catch more flies with honey than with vinegar. Still, feeling patronized by my doctors and PAs gnaws at my innards; and it's happened way too often this year.
- Being fired as a patient is strangely infuriating, humiliating, and liberating all at the same time.
- I deeply resent the way my insurance company treats their customers with OSA: The the large 50% co-pays on all cpap-related equipment and the foot dragging on providing any meaningful information about the replacement schedule for the consumable supplies are more than annoying.
- I know now that I cannot let this year's "open window" for examining health care benefits and establishing a medical Flex account slide by. I've got to get a handle on the expected costs of the xPAP supplies and the Deplin, which is uncovered by insurance since it is a prescription medical food rather than a drug, along with all the other stuff that we've ignored in the past because it just didn't add up to that much.
- I'm a lot more stubborn that I thought I was. Sometimes this is a GOOD thing: I've stubbornly keep sticking Kaa on my nose every night in spite of everything.
- Breathing freely through an unclogged nose during my seasonal allergies is FUN. Even if it does require using a neti pot every night as well as daily doses of Zyrtex and Flonase.
- Being outside for at least one several-hours-long period doing something FUN each week is necessary to my spirit. In the winter Sunday afternoon/evening skiing was my lifeline for holding onto my sanity during some very dark days of dealing with migraine med side effects, continuing issues with xPAP, and the toll the war on the insomnia was taking on my psyche. Hubby and I are still working on finding good alternatives for the non-winter months. And much as I love gardening, it's not really the replacement I need.
- Winter really is my favorite season---now that I live in a place with snow again. And spring remains the season that I like the least. I can't really imagine retiring to a place with a 12 month growing season: Twelve months of pollen and bugs is NOT fun.
- Even I can have days that are completely free of headache pain---at least sometimes. And the nurse in my neurologist's office is right: It is NOT asking too much of my medical team to help me get to where I have MORE headache-free days than headache-filled days.
- I need a better sense of humor. Humor was never a strong suite for me, and what little I have has been AWOL for much of the time since last August's OSA diagnosis.
- I genuinely enjoy writing for the sake of writing---as long as I can do it at the keyboard. And I find journaling and blogging to be particularly therapeutic when I'm feeling really lousy about all the bad things in my life.
- I'm blessed to be a tenured professor in a department of kind and caring colleagues. I really don't know how I would have made it through this tough academic year without their help and their concern. I can only imagine what those of you who live in the real world have to go through when you hit really rough spots in dealing with your OSA or other health problems.
- And most of all, I've been reminded time and time again about just how special my dear hubby is. He's put up with so much from me this past year: My screaming fits, the disruption to his sleep, the disruption to his schedule, my leaning on him to drive me everywhere during the first several months of therapy, my lack of energy to do anything around the house, my need to have him play phone tag with my doctors, the necessary changes to both our lives that have been made to tame my insomnia monster and make room for Kaa in our life. He's been a constant comfort to me: Providing me with a shoulder to cry on at all times of the night and still brave enough to give me a good kick in the rear when I badly need a reality check to break out of the hissy-fit mode. He's done more than his fair share by picking up the slack for me without much complaining on my worst days and has helped me celebrate numerous small and not-so-small victories along my path in Hosehead Land. And Migraine Land. He's an identical twin, but he's really one-of-a-kind.
