four months and still not fully adjusted (LONG UPDATE)

[robysue]

This is a really, really long post. Sorry about that. But it updates a number of threads I've started about my therapy and related issues about why it's not been going so well---which seems to be unusual for someone with rather uncomplicated run-of-the-mill OSA not complicated by anything in particular, at least sleep apnea wise.

I had yet another follow-up with the PA in the sleep doctor's office yesterday. A scheduled forty minute follow-up mainly to concentrate on the insomnia, but also looking at the ongoing BiPAP adjustment.

The time line for those joining my story late or who simply can't remember the plot line through the last six months since I was diagnosed with OSA:

Aug 1: Diagonostic sleep study. Rx Moderate OSA, no restless leg syndrome. Got a call back from by PCP and the sleep lab encouraging me to set up a follow-up with the sleep doc ASAP to talk about results and get the titration study done.

Aug 24: Appointment with sleep doc. First and only time I've had a chance to talk to the doctor himself. This was the earliest appointment his office could work in---even though they called with the ASAP message very shortly after Aug. 1. My husband went with me. I was floored by the fact that the diagnosis was for moderate apnea instead of mild and that the doctor was trying to rush me into (a) the titration study and (b) using the DME that was right next door (which I'm sure he has some financial interest in. I'd already started doing some reading on this board and another one, and asked about a full-data machine and he poo-poo'd that idea saying that I wouldn't need one since all I had was simple OSA. I said I wanted one, and he again said there was no need for one. I asked what kind of problems I might have adjusting to CPAP and what kind of support I might get for any potential problems. And he said (and I quote as near verbatim as I can remember): "Most people don't have any trouble adjusting to CPAP. You'll probably start feeling much better in about two weeks." Now understand---I was NOT feeling bad at the time of my diagnosis: I'm one of the rare ones with OSA and very few or no symptoms: At the time of diagnosis, I had no daytime sleepiness, only a moderate amount of daytime fatigue that was then (and still can be) attributed to me being a menopausal woman with some minor arthritis and a history of migraine, tension, TMJ, and sinus headaches. The titration study is set for the following Sunday night; I refuse to sign the paperwork authorizing the doctor to fax the prescription to the DME that he had suggested.

Aug 29: First titration study. The prescribed pressure turned out to be 9 cm---based on the last 33 minutes of sleep before the 5 AM wake-up time. We left town to take my son to college later that week. By the time we got back after Labor Day, the sleep doctor's office started making almost daily calls continuing to try to talk me into using the DME first suggested by the doctor. I continued to refuse all the while continuing a long and frustrating, but ultimately successful search for a DME that would provide me with a full-data machine based on a doctor's prescription that read nothing but "CPAP at 9cm with heated humidifier; mask of patient's choice."

Sep 21: I made the final selection of DME and phoned the sleep doctor's office with the news and told them where to send the prescription. Along the way, I also secured copies of the dictated results and the graphs of both my sleep studies and a copy of the prescription.

Sep 23: I started CPAP therapy on a Resmed S9 AutoSet in CPAP mode at 9cm with EPR set to 3. And almost immediately I started to crash and burn in the sense of my daytime functioning. By night three, insomnia was starting and I was getting serious aerophagia issues. I also started posting regularly here about my trials, tribulations, and occasional triumphs.

Oct 12: First emergency meeting with the PA in the sleep doctor's office. Discussed extreme daytime sleepiness, extreme daytime fatigue, air getting into eyes without any apparent mask leaks, serious aerophagia, and whole host of other issues. She ordered a week of auto-titration.

Oct 19: Met with PA again. Therapy changed to APAP running 4--8 cm. Aerophagia was still there, but more tolerable. Air-in-eyes seemed to be gone during the auto-titration. But daytime sleepiness and exhaustion were still major problems.

Nov. 18:Second semi-emergency meeting with PA. This meeting was squeezed in 48 hours after I called to complain that the daytime sleepiness and exhaustion were not getting any better, the insomnia was getting worse, and the aerophagia was back---at least on bad nights. By this point I was also seeing a few really nasty clusters of 10--15 (and even once 20) apneas/hypopneas taking place in the occasional very, very bad hour or two of the bad night as far as AHI was concerned. But AHI and my daytime functioning were not very tightly correlated---in other words, there were plenty of days where the overnight AHI on the S9 was between 0.2 and 0.6 and I still felt lousy and couldn't function in the daytime. Of course part of that is that I never felt good during the daytime. I always felt tired, exhausted, and very, very sleepy. At this meeting, the PA said she had spoken to the sleep doc about my situation and that they had decided a bi-level titration might be something to look at. Around this time I also started to deal with tests to track down what was most likely causing some significant vertigo spells that have also been interfering with my ability to function in the daytime for about 6 to 9 months.

Nov. 23: Both a VNG test (for vertigo) and the bi-level titration were done. The VNG test wound up being "normal," except for a slight weakness on the right side on the caloric test, which tends to support the eventual diagnosis of migraine related vertigo and at the same time also continues to support the ENT's original instinct that my left-side slight conductive hearing loss is "odd". The bi-level titration is, to say the least, a near disaster: I slept a scant 110 minutes or so, and have an almost 2 1/1 or 3 hour chunk of severe insomnia (with NO dozing in Stage 1 even!) durning the middle of the night. But on the positive side, there was a nice 90 minutes or so of sleep in the first half of the night that I characterized on the morning after sheet as "some of the best sleep I've gotten since September 23" with a nice REM episode in the middle of it---but a very shortened REM latency of only 50 minutes to REM from sleep onset. Prescription "guess" for bi-level coming out of this study is my current setting of 8/6, with a note that due to the short amount of sleep and the fact that all the REM was in a period where the settings were still at 5/4, another titration study may need to be done. The doctor's notes also state "the cause of the insomnia is not apparent." or some such thing. And yet, I'd been talking to the PA about CPAP-induced and CPAP-inhanced insomnia ever since Oct. 12. And the doc has no idea what might be causing the insomnia?

Nov. 30: Another follow-up with the PA. Discussed the results of the bi-level titration. Discussed whether to go with the BiPAP or not. Discussed why the study was so bad---i.e.~I talked about why I thought I had so many problems sleeping that night. I also tried to ask questions about whether there's any indication from the data about why I might be having trouble with xPAP therapy, but get a blank look more or less from the PA. Came away with a prescription for a bi-level to take to the DME with pressure set at 8/6. The DME told me they'll need more paperwork from the sleep doctor's office. And I and the DME started discussing whether Resmed makes a bi-level machine. I put off giving them permission to order the PR S1 BiPAP Auto until I have a chance to do some investigating. And I decided to change the Resmed S9 AutoSet's range to from 4--8 with EPR = 3 to be 7--8 with EPR =2 since this more closely resembled what the bi-level machine's setting will "feel" like once I finally get in later in December.

Early to Mid December: The vertigo problem is diagnosed as being migraine related, and the neurologist prescribes topiramate (generic for topamax) as a prophylactic treatment to try to prevent the vertigo episodes from happening in the first place. The downside, of course, is that the treatment will take several weeks or months before it will be clear whether the treatment is working. The topiramate also has to be ramped up in dose over the course of several weeks. At the same time, I also started some vestibular rehabilitation for the definite right sided weakness that was found on the VNG. As for the OSA and insomnia and BiPAP, I picked the PR S1 BiPAP Auto up on Dec. 21.

Dec. 30: A third semi-emergency meeting with the PA. This time the major focus was the insomnia since the week-old switch to BiPAP seemed to be addressing the issues it was supposed to. I was finally feeling a bit less sleepy in the daytime (at least at times) and a bit less exhausted), but the insomnia had clearly become my major issue and by this point, it was no longer solely being fed by xPAP issues alone. Or even primarily by xPAP issues at this point. Thus starts the war on the insomnia with the cognitive behavior, the sleep restriction/time in bed, and use of Ambien as needed. Already at this point, the topiramate was beginning to cause its own side effects and I had also reported them to the neurologist's office the same day as the appointment with sleep PA. The topiramate dose was cut back slightly on Dec. 31.

And that brings me to the next chapter in my on-going story.

In the last month, I've been dutifully keeping a sleep log. According to the PA at yesterday's meeting, I've been too dutiful: I write too much detail in my logs and she wants me to try to cut back on the detail so I'm focusing less effort and energy and worry on my sleep. [There is much truth in this, alas.] Such is the training of a college professor---we use our too well-honed data gathering skills when asked to gather data. Since my handwriting is impossible to read, I had typed up my sleep log notes that were written each morning about how I felt about the previous night's sleep and what I remembered about each of the wake ups, and, math professor and number geek that I am, I also included the Encore data from the PR S1 and pointed out that the wake ups are easy to see since I routinely hit the ramp button because I'm not comfortable breathing at 8/6 because of stuffed goose feelings. [A comment that comes out on many a day in many different forms in the sleep log notes.] And for the most part, since Dec. 30, the pattern had been one or two really bad nights followed by a string of four or five relatively decent nights. Not great nights, but relatively decent nights. And I could tell this in my writing. And when I handed the PA the notes earlier in the week, that's really what I thought we'd both want to talk about during the meeting: The fraction of relatively decent nights is, in itself, pretty decent: 5/7 days on average are relatively decent--not "good" but decent. And the overall trend of what is "decent" is also improving as well. I've had some stretches of 3--5 days in a row where I've had two to four wake-ups per night and have felt almost refreshed when I awoke. And almost refreshed is a feeling that I most certainly welcome as I've not experienced it in months and months and to be honest, perhaps even years.

Unfortunately, on Wednesday night, the topiramate apparently had other ideas though. On the reduced dose of topiramate, the worst side affects had gone away---for a while. But by the beginning of this week, three of them had started to subtly grow out of control: Dryness in general (in spite of working hard to keep myself well hydrated); a particularly foul taste in my mouth, which renders it hard to eat; and a certain anxiety/nervousness that insidiously gets far worse right at bedtime with the bedtime dose of topiramate. And on Wednesday night, the perfect storm of topirmate side affects came together shortly after I tried to got to bed---after it was too late to take an Ambien (because it was less than 6 hours to my wake up time). And the insomnia monster hit big time fueled and fed by the topiramate anxiety. It was 4:30 AM before I finally got to sleep and my husband allowed me to sleep until 9:30. Unfortunately, I have an 11:00 on Thursday. And then I had a lunch meeting, and another class and office hours. I had no chance to call the neurologist that day, but did on Friday.

Thursday night, I took the Ambien at my 1:30 bedtime even though I was very anxious and not at all sleepy. It took a good 20 minutes to fall asleep with the Ambien. And I woke up twice. And in the morning I woke up very, very groggy, as I have on the other nights when I had taken the Ambien.

Friday morning before taking me to the appointment with the sleep doctor's PA, my husband called the neurologist's office to report my problems with side affects with the topiramate. [Hubby is on the Hippa list at all the doctors now--just so he can help deal with the phone tag that drives me nuts.] After reporting my symptoms, he also gave them my office number and the instructions that I would not be available by phone until after 3:00 that afternoon due to my schedule and off we headed to my appointment with the PA.

In light of the trouble of the last two nights, of course, instead of focusing on the fact that 5 out of 7 nights (on average) are now "decent" and that I still have some real problems with micro naps during the day even on days that follow the "decent" and the "good" nights, it's no surprise, much of Friday's meeting focused heavily on those 2 out of seven nights (on average) that are bad or really bad disasters. Because these disasters always wind up starting out with me hoping (and expecting) that I'll be able to get to sleep without any problem, the Ambien has been a problem because I can't take it after I've had to get out of bed in the first place. My sleep window is just too limited. So the PA did switch the sleep med from Ambien to Sonata, which can be taken as late as four hours before it is time to wake up. This means that if I have trouble that forces me out of bed and it's 2:30 AM or 3:00 I can still take the Sonata and try to avoid the two hours or more of major insomnia in the middle of the night. As before, the PA only wants me to take the Sonata if I really think I'm in trouble. She and I both want me to get the insomnia under control without resorting to long-term and daily reliance on sleep meds.

The PA had taken the time to read what I wrote, which surprised me. What surprised me even more was that she wanted to do another auto-titration to see if the EPAP pressure in particular might be a bit too high. My husband was with me at this meeting. He and I have talked (at length) about how I really would like to have another lab test done to see whether there's any evidence that I'm getting into (or not getting into Stage 3/4 sleep with the BiPAP) and how many "spontaneous" arousals I'm still having in spite of xPAP therapy. On my diagnostic sleep test I did get into State 3/4 (albeit briefly), but failed to do so on either of the two titration studies. The number of spontaneous arousals (both in terms of numbers and in terms of index---i.e. average number per hour) went way up between the diagnostic test and the CPAP titration. There was so little sleep time on the bi-level titration, that it's hard to say whether those numbers are meaningful, but they are also higher than the original diagnostic test. The PA noted that because the serious flaws with the bi-level study, another full bi-level PSG could be justified. And that some "objective" data to go along with my "subjective" data about the number and severity of the wake-ups and arousals might be useful. I agree here---some objective data about the current level of fragmentation of my sleep is badly needed at this point. If the objective data looks substantially better than my subjective feelings about the quality of my sleep, then I know the remaining problems are largely mine to resolve, but if the objective data shows that my sleep is still badly fragmented, then at least I'll know why xPAP has failed to me feel any better (or rather made me feel worse) even while eliminating the respiratory related arousals that were so clearly disrupting my sleep in the August 1 sleep study. And so my fourth sleep study in six months is now scheduled for the night of Feb. 4. It will be a second bi-level titration study. I hope that it goes better than the first on in terms of actual sleeping. But I also hope that it's a good night as far as events are concerned, since I have fears of being over titrated as happened on my first titration study.

By the end of Friday, the neurologist's nurse had gotten back in touch with me about the topiramate. The doc wanted me to cut back to one 25 mg tablet at night for a week and if the side affects are then under control, then go back to two 25 mg tablets per day---one in the morning and one in the evening. Now it's clear to me, my husband, and the sleep doctor's PA that the anxiety caused by the topiramate, along with the dry mouth and bad taste in the mouth, are feeding the insomnia monster even though I asked the neurologist about this at my 1/13 appointment and he was skeptical about the topiramate aggravating or causing insomnia because the common side effect is fatigue and drowsiness. (And he simply wanted to prescribe a different sleep med without any worrying about working on the cognitive behavior stuff designed to try to consolidate my sleep cycles as near as I could tell.) I had to re-iterate to the nurse three times that I really didn't want to take the single dose of topiramate at night due to the insomnia and ask her whether it could possibly make any difference to take the single dose at breakfast time. She finally said she might be able to catch the doc if I could hold on for a minute. Fortunately I could and she did catch the doc who said if it was that important to me to take the topiramate in the morning. I called the sleep doctor's office back to try to get a message back to the PA to tell her than the topiramate dose had been cut back, but I don't know that she got it.

So last night after picking the Sonata prescription I was actually surprised that when bedtime came, I was more than ready to put the mask on and get some Zzzzzzzzzz's. There was a problem with the bipap air smelling like sweaty socks (likely topiramate side affect related to bad taste in the mouth, which resembles a cross between metal and smelly socks for me), but unlike two nights earlier, last night I was either too tired to care or (more likely) the fact that I did NOT have the night time dose of topiramate (since the neuro doc had let me cut it out), I was simply a lot less anxious, so the self-reinforcing, highly negative anxiety fed loop that triggered the physical overstimulation that led to the insomnia on Wednesday night just didn't get started.

I did wake up a bunch of times---something like 6 or 7---and some of them were aerophagia related. But except for a couple of them where I woke up in a bit of a panic and my mind was racing, all I had to do was hit the ramp and turn back over and I got back to sleep pretty fast. The 6 or 7 wake-ups is more than I've been having on the "decent" nights. But since I was able to stay in bed the entire night and I felt like I got some where between a total of 4 and 4 1/2 hours of sleep in the 6 hours I was in bed, this night was far from a disaster. I rated it as a "so-so" night in the sleep log this morning. And surprisingly, the micro napping and daytime sleepiness has not been any more of a problem than it usually is on a "decent" night.

So I'm reasonably sure that tonight stands a chance of being a decent one. We'll ski again tomorrow. That usually leads to a good night insomnia wise and a decent night AHI wise. I'll probably call the PA on Monday to make sure she knows the neurologist did cut the topiramate dose back and also ask what if anything I should do about the fact that the sleep study's lights out is 11pm and my bedtime is 1:30. I'll likely fall asleep well before 1:30, but I doubt that I'll stay asleep if I fall asleep that early. But I'm sure I'm overthinking things again.

And at long last, the "decent" nights are finally starting to outnumber the "bad" ones---even though the bad ones are still really, really bad. And at least I am now beginning to feel more like my old self---sometimes for several hours at a time---on the days that follow the decent nights. I still need to get the excessive daytime sleepiness dealt with. I am tired of being afraid to drive for any major distance or after a bad night for fear of falling asleep at the wheel. But the daytime mental fog is no longer a constant thing: I have several hours each day where I am functional. And the length of time seems to be growing steadily until it is temporarily interrupted by the periodic pairs of bad nights.

Well, I'm off to watch the rest of Perot uninterrupted by the internet. And then I have to put Kaa, my BiPAP, back together for the night after his weekly cleaning ... And then a variety of things like reading and crosswords to stay awake until 1:30 in the morning ..

[newhosehead]

robysue,

What a journey you have had. I know I have read some of your posts but did not have the whole picture as you presented it here.
I am so sorry this is such a rough ride for you. Just out of curiosity, if you were relatively asymptomatic, what led to a suspicion of OSA? Also, did you have a history of insomnia before beginning treatment? If I missed the answer to both of those questions, I apologize for not reading closely enough. If you did not suffer from insomnia before, this must be even worse to deal with and I have to applaud you for staying with it as well as your tenacity with the whole Dr/DME situation.
I am hopeful you will get some answers, not to mention relief, SOON.

Jeanette

[Big S]

Thanks for the update. On the lighter side, I think if the day were about 4 hours longer, most of your problems would go away. You really seem to have a ton of energy. When you get tired of teaching math, if ever, I'm sure you could teach PAP therapy! Good luck and turn off the motor occasionally.

[robysue]

robysue,

What a journey you have had. I know I have read some of your posts but did not have the whole picture as you presented it here.
I am so sorry this is such a rough ride for you. Just out of curiosity, if you were relatively asymptomatic, what led to a suspicion of OSA?

Yes, I was realatively asymptomatic prior to my diagnosis---particularly in terms of daytime functioning.

My sleep study was done at the request of my husband who had noticed me snoring at night---sometimes loudly---and sometimes stopping breathing at night for long enough periods of time where he would jab me to get me to start breathing again. I would never remember him jabbing me when we woke up in the morning though. So we were both pretty sure that I had mild sleep apnea. And if you tell your PCP at a routine physical, "My spouse thinks he/she has seen me quit breathing at night ..." you will IMMEDIATELY be given a referral for a sleep study regardless of anything else you might say or not say.

My husband and I both thought my apnea was bound to be mild because I had absolutely no other identifiable symptoms. And no other anpea-related or apnea-associated health issues either: Normal weight, normal blood pressure, normal blood sugars, no night-time potty visits ever, no waking up gasping for breath, no dreaming about drowning or choking (but lots of REM sleep with vivid dreams), and sleep quality that I rated at the time as "fair" because I knew I didn't wake up feeling as refreshed as I used to even four or five years ago, but on most nights I'd sleep through the night in the since that I wouldn't remember waking up. Or I'd wake up for sensory reasons and have trouble getting back to sleep. Traffic noise, the noise of the neighbor's air conditioner, heat and humidity in the summer (we don't have A/C), or A/C turned on too high or too low when visiting friends or relatives are all examples of things that could trigger a night with some sensory-based insomnia.

Also, did you have a history of insomnia before beginning treatment?

I've had several bouts of semi-severe to severe insomnia in my adult life with an on-going tendancy of frequent mini-bouts of insomnia. I've never had to resort to sleep medication before primarily because the tenants of good sleep hygiene were always enough to keep the insomnia well under control in a day-to-day fashion: Random bad nights here and there where I couldn't sleep. Problems with insomnia whenever the stress at work or in my personal life got kicked up a notch that would resolve when the stressful situation would resolve. And at one point my husband found it hard to understand that there simply could not be a tv in our bedroom---until his beloved tv triggered a bout of insomnia in me. It took him quite a while to realize that my pleading to kick the tv out was really based on my sleep needs because at the time it appeared that I would fall asleep ok with the tv on when he was watching it. But unknown to him, it would disturb my dreams and the afterglow of the tv would last far longer into the night than he thought and wake me up after he turned out the lights. Reading in bed has been a no-no for me since my very early 20s---essentially as soon as I moved out of a dorm and into an apartment that had a separate bedroom and living room, I started using the bedroom only for sleeping. If you go down a random good sleep hygiene list, just about all the behaviors ---except for rigid bedtimes and wake up times--- were already a firm part of my lifestyle before this insomnia monster raised its head.

By sometime in late November I believe this particular bout of insomnia became hands down the most serious and most persistent bout of insomnia I have ever had to deal with both in terms of length it has lasted and the impact it has had on my day-to-day life. And that has been why I've written so much about it here. Cpaptalk really has become the missing patient support group that I need so much.

If I missed the answer to both of those questions, I apologize for not reading closely enough. If you did not suffer from insomnia before, this must be even worse to deal with and I have to applaud you for staying with it as well as your tenacity with the whole Dr/DME situation.
I am hopeful you will get some answers, not to mention relief, SOON.

Jeanette

Thank you for your support and for reading my posts. It means a lot to me when people read what I write. As for the tenacity, well stubborness runs in my family and untreated apnea has serious consequences. But there have been times where I've really wondered if it will ever be worth it ...

[robysue]

Thanks for the update. On the lighter side, I think if the day were about 4 hours longer, most of your problems would go away.

Yes, they would wouldn't they?

You really seem to have a ton of energy. When you get tired of teaching math, if ever, I'm sure you could teach PAP therapy! Good luck and turn off the motor occasionally.

That's what folks always tell me. I think it's a coping mechanism. Teaching is like being on stage. I get energy from teaching the same way many actors get energy from their audiences. But after the show is over and I'm at home with my hubby, I'm drained.

It's ten of one and time for me to shut the computer down to focus the eyes on something with less blue light so that when I go back and put Kaa on my face my eyes won't be seeing computer-monitor induced images on their eyelids. (And yes, that happens).

So I've got a load of laundry to fold. Then some light reading if necessary---the old fashioned kind with pages you turn. And not work or math related.

And skiing tomorrow!

So for now the insomnia monster should be at bay lurking somewhere in the corner under the large pile of dirty clothes that didn't get washed today. He can stay there. I don't give a you-know-what about the dirty clothes. They'll wait another week if need be. So I think the insomnia monster will sleep under those clothes tonight and I'll sleep nestled between Kaa and my husband.