When? When? When? Feeling worse after CPAP

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When? When? When? Feeling worse after CPAP

Postby glennotf » Sun Mar 27, 2011 10:12 am

Hi. I'm sinking. My GF of 5 months encouraged me to get a sleep study done. I knew I had apnea. My father had narcolepsy and apnea. The study showed severe apnea. I've been on a C-PAP for seven weeks. My first week I unfortunately developed a flu that turned into pneumonia. I've been using the C-PAP (Respironics nasal pillow) diligently and, in that time, have had maybe one or two morning where I felt like "This is how it feels to have slept!"

I have been out of the pneumonia for the past month, but I'm told that symptoms like fatigue can persist for up to 12 weeks.

My poor girlfriend. I have pushed her away somewhat. I am SO tired. I don't want to go out. My kids (16 and 13) are disappointed in me because I don't have energy to do anything. My interests, which are many, are suffering. I'm mismanaging my money horribly. I'm becoming depressed. I'm ready to call my doctor this week and ask for antidepressants, but I KNOW this isn't clinical depression (yet). The docs at the sleep center have been terrific trying to figure out what's going on. The data from the C-PAP shows that my sleep has improved, but I only feel worse. I know it can take some time for sleep to become reordered and, also, for pneumonia-related fatigue to dissipate. I am, however, at my wit's end.

I'm going to my GP this week to beg for Provigil. My thinking is that it will at least help with the excessive daytime sleepiness (EDS) and might just be a bridge between how disordered my sleep had been and how good it might be after it's improved.

I'm not sure if I'm asking for anything here. More than anything, I'm writing this in the hopes that others might respond with their stories and I won't feel so alone.
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Re: When? When? When? Feeling worse after CPAP

Postby i8chillywilly » Sun Mar 27, 2011 6:35 pm

You didn't ask a questions so I wont asnwer one.

Sounds like your down. Do your best. See your doctor. Maybe see a therapist/councilor too? Depression sucks, even if it is not "clinical."

The flue is serious and can make you feel awful for a long time. There is the direct sickness from it, plus you got pnonmia... maybe from a secondary infection? It can take along time to get back to 100%. Sounds like you had a really bad case regardless. You might just need more time to fully recover. Don't beat yourself up.

Sleep Apnea is serious too. Ask your family to support you. Explain that while right now you are down, soon you will be back to 100%. You just got over the flue and pnomia and are working on the sleep apnea thing with a new crazy machine hooked up to your face, that with continued therapy of sleep apnea you will be more than 100%!!!

Got to give you body more time to adjust to the machine. Alow yourself to heal from being sick.

Hang in there.
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Postby NancyP » Sun Mar 27, 2011 7:06 pm

Hang in there. I too feel more tired after CPAP. I see my sleep doctor again this Thursday (last time I saw him, he upped my pressure by 1 unit and it hasn't helped). I hope that the prescription is prescribed if it will help you. I asked for it and my doctor told me no and wanted to do another sleep study (2 weeks after my 1st one).

For some reason - it takes some of us longer to feel energized than others. Sometimes the prescription, the machine, or the mask isn't right - and for others, it just plain takes longer. My numbers are great and I average between 0.1 and 0.3 AHI. My sleep study AHI wa 108 - so as you can see, my heart IS benefiting from the CPAP. I'm just tired of being tired and sadly I have resorted to drinking caffeine (I never drink caffeine) everyday now.

Sounds like getting over pneumonia is what you need to get over first. So patience and understanding. :)

Hopefully your girlfriend can be a little bit more understanding and perhaps take on more regarding your children. She can go out and buy the pizza, take them to the movies or shopping, or whatever they like to do. Knowing this is all short-term (have a family talk with all. Communication is essential) - it may go a bit smoother. I know it must break your heart. I feel for you.

Keep in touch and let us know how everything is going.
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Postby sakura » Sun Mar 27, 2011 7:54 pm

I am relieved to finally find someone who has a similar experience to mine.

I can't get any straight answers for feeling so awful and not being able to function at my former level. I only developed symptoms after starting cpap a few months ago! Felt fine before...the good old days...LOL

Everything about my treatment suggests it is successful. Well, in my book, part of success is not impairing the productivity and physical/mental well-being of the organism being treated.

I would be willing to not feel better from cpap treatment, but I'm not willing to feel and do much, much worse for an indefinite period of time. This feeling worse is happening every single day. Whereas sleep apnea is more of a russian roulette, what most people don't want to acknowledge is that not every single person suffering from OSA dies or is disabled early. At some point, it may end up being a risk I take, just like many others in modern life.

I'm sorry to sound like such a downer, but today has been an especially bad one.
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Postby i8chillywilly » Sun Mar 27, 2011 8:51 pm

sakura wrote:I am relieved to finally find someone who has a similar experience to mine.

I can't get any straight answers for feeling so awful and not being able to function at my former level. I only developed symptoms after starting cpap a few months ago! Felt fine before...the good old days...LOL

Everything about my treatment suggests it is successful. Well, in my book, part of success is not impairing the productivity and physical/mental well-being of the organism being treated.

I would be willing to not feel better from cpap treatment, but I'm not willing to feel and do much, much worse for an indefinite period of time. This feeling worse is happening every single day. Whereas sleep apnea is more of a russian roulette, what most people don't want to acknowledge is that not every single person suffering from OSA dies or is disabled early. At some point, it may end up being a risk I take, just like many others in modern life.

I'm sorry to sound like such a downer, but today has been an especially bad one.


Sakura:

Good point. I too did not and do not find using the CPAP a magical cure all as some report. I veiw it is a tool to help with an issue. There have been long periods of time that I do not use since I was prescribed one. I generally feel like I sleep better without it. Sometimes it is so bothersome I can't sleep at all so I take it off, other nights I have to decide if getting a good night sleep without it is worth the "risk" of not using it. I haven't used it in four months because my nose has been so irritated by the air being drying because of the heat being on during winter. I have tried all the tricks, use a humidifier turned up all the way, gone to sleep clinics, tried nose sprys and spent thousands of $ on various masks, tubes, humidifiers, wraps, straps, mouth "apliances" and two CPAP machines.

One odd thing, I think I will start a new post on this is, since I have stopped using it, in December 2010, for the past 4 months I have lost considerabel waight. I wonder if this is related or coincidence.

Anyway, back to the original post, ask for help and talk to the family. In the long run the CPAP has been demonstrated to be a very effective thearapy tool.
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Postby NancyP » Sun Mar 27, 2011 8:59 pm

I hear you Sakura - But don't give up until you exhaust all avenues. Make sure your machine, mask, and prescription are spot on and correct for you. If your heart is benefiting from the CPAP - then perhaps something else medically is going on. Explore all avenues (I know I will be!!!).

But having said that - it is terribly disappointing that our quality of life has gotten worse since on CPAP and that's why we must find a solution. I will be very vocal with my doctor this Thursday, that's for sure, and I will report in and tell everyone what he said and what he suggests (if anything). I just may be firing him. We'll see.

It shouldn't be that just our AHI numbers are now good - QUALITY of life is essential as well, and I need answers and solutions just like many of you do.

My thoughts are with all of you . . . until Thursday . . .
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Postby robysue » Sun Mar 27, 2011 10:15 pm

glennotf, i8chillywilly, NancyP, and sakura:

I have been working exceptionally hard to make CPAP work for me for the last six months. I have used my machines (first an APAP and now a BiPAP) every single night, all night long right from the start. And I've had an exceptionally hard adjustment period; the tale of this adjustment period is included at the end of this post. And why have I worn the mask each and every night even though for a very long time I know I would have slept much better and more soundly without the mask? Because I knew in my heart of hearts that consciously going to sleep without the mask even once would make it that much more difficult to mask up the next night. And the night after that and the night after that ...

I also want to encourage ALL of you to NOT give up: OSA is an insidious disease that slowly, but surely eats away at our health. I say this as someone who was largely asymptomatic when I was diagnosed with moderate apnea in August 2010 and who even now cannot say I feel and function better than I did pre-CPAP on every single day. Some days, yes. Many days, no. But I have no doubt whatsoever that if I'd left my apnea untreated, it would only have been a matter of time before the damage it was causing my body on a nightly basis would have started to manifest itself in daytime symptoms.

So why have I stuck with making myself adjust to this therapy that was literally ruining my life last fall? My family medical history includes many, many comorbidities of OSA, including high blood pressure, stroke, heart disease, and type two diabetes. I have no desire to live with any more risk of these diseases than I already deal with. And I know that with hard work, this therapy will EVENTUALLY work for me. If I put enough time and effort into making it work.


And here is the story of my seven month journey into the world of OSA and my six months with xPAP therapy:

On August 1, 2010 I was diagnosed with moderate sleep apnea by a PSG. Since then it's been quite a ride:

August: After I got the diagnosis, a meeting with the sleep doctor was scheduled in mid-to-late August. I started reading about CPAP machines and the necessity of getting a machine with full efficacy data. At my one and only meeting with the sleep doctor, he assured me that I did not need a full data machine and that I would be feeling better in a couple of weeks. Mind you, I was NOT feeling particularly bad at the time I was diagnosed. I tried to raise concerns about potential adjustment issues and was brushed off. I declined to approve sending my still-to-be-determined prescription to the DME next door to the sleep doctor's office immediately following the titration study set for September 1. I suspected the doctor had some kind of financial interest in that DME and I did not trust that I would get a machine with full efficacy data.

September: Titration study done on Sept. 1. And I received my Resmed S9 AutoSet after three weeks of investigating DMEs and numerous calls to both my insurance company and to DMEs that insisted I'd need a special prescription for a machine with efficacy data. Took delivery of the S9 AutoSet on September 23. I was first titrated at 9cm and I could not tolerate it because of aerophagia, air-in-eyes-through-tear-ducts, general sensory overload, and the start of insomnia. And I experienced a major crash & burn as far as daytime functioning was concerned. I felt 100 times worse on CPAP than pre-CPAP and was functioning about 200 times less effectively during the daytime. But got great AHI's on my old Resmed S9 Auto set to straight CPAP mode. Only thing that kept me masking up in those early, very dark days was the knowledge the machine was doing something for the apnea.

October: Within the first month of xPAP I had two meetings with Keryn, the excellent PA in my sleep doctor's office. And a switch to APAP with a range of 4--8cm after a week of autotitration using the S9 AutoSet at home. Managed to get the air-in-eyes to more or less go away. Took the edge off the aerophagia, but did not eliminate it. And the insomnia continued to grow. And I continued to crash & burn. And felt no better. But the AHI's continued to look good for the most part. [Halloween night was the exception for some reason: AHI topped out at something like 5.5 that night; still the worst night for AHI I've had since starting.]

November: Two more meetings with the PA; still no progress in getting my daytime functioning back. Aerophagia still problematic. Keryn suggests a possible switch to a bi-level. The bi-level titration is scheduled the Tuesday before Thanksgiving. And the insomnia monster shows up in full glory: 80 minutes to get to sleep and a solid three hour long wake after sleep onset period wipes out most of the night. But what sleep I got felt better than any I'd gotten since Sept. 23. New prescription for a bi-level at 8/6.

December: Shopping for a bi-level. Educating a DME that the V in the Resmed VPAP Auto 25 does NOT stand for "ventilator". Finally deciding on the PR System One BiPAP Auto because it uses an SD card for the data where the VPAP Auto 25 uses a proprietary card. And by now the insomnia has grown fat and strong. And two more meetings with Keryn the PA. And at the second one I can finally say the sleep I get with the BiPAP feels pretty good---but the problem is the insomnia is preventing me from getting any decent quality sleep. And I need to focus my work on the insomnia. And along the way, a diagnosis of migraine-related vertigo with a prescription for topiramate.

January: A sleep restricted regime and a sleep log and prescription sleeping meds as a way to prevent too many "disaster nights" in a row. Sleep log shows aerophagia is still an issue. Topirimate starts causing side effects. But the sleep log also shows a big decrease in sleep latency and a small decrease in number of night time awakenings. Meeting with Keryn results in another titration study scheduled for February.

February: The sleep study results a really good night's sleep and in a pressure reduction to 7/4, which the tummy loves. But unfortunately that winds up letting too many snores in at home and the AHI's start to increase slightly: From the 1.0 to 2.0 range they'd been at with the 8/6 setting to 1.5--3.0 and occasional readings over 4. And I feel those nights with AHI on the high side of 3.5. And the topiramate side effects are serious enough where the neurologist treating the migraine related vertigo switches meds to Lamictal.

March: By March 13, the lamictal had to be discontinued due to adverse side effects. The AHI's were still too frequently above 3. And I'd hit a plateau on the insomnia. On March 13, a phone call to Keryn resulted in my being switched to Auto BiPAP: Max IPAP = 8; min EPAP = 4, PS = 4. Effectively this means the pressure ranges from 6/4 (when I turn the machine on) to 8/4 or 8/6 depending on what the EPAP wants to do. 90% pressure levels are running at 8/6, but median EPAP is 4. So the aerophagia has returned, but not (yet) with a vengence. The AHIs are starting to decrease again to what they were in January. And today my migraine med was officially switched to divalproex sodium (generic for Depakote), yet another anti-seizure med. But this time we're trying a pediatric dose rather than the adult dose. We'll see how it goes.

So four sleep tests, two xPAP machines, four different prescribed pressure settings, eight face-to-face appointments with the PA (with another scheduled for Monday), and numerous phone calls between those visits later, how am I doing?

My body finally seems to be more-or-less adjusted to sleeping with the BiPAP; masking up no longer causes me to become WIDE AWAKE. I never had issues with pulling the mask off my face. And now I've learned not to dread bedtime as much as I did back in the fall. And I've got working strategies to deal with the exhaust jet from the Swift FX that chapped my lips so severely back in January. I've even noticed a few subtle changes in how my body feels when I wake up now:

    I no longer wake up with minor joint pain in multiple joints every morning. Most of my joints remain pain free throughout the day.

    I often wake up without a headache now. But I still have morning headaches on a significant fraction of mornings---probably as many as 30--50% of the mornings I still have a headache. The character of the headaches has not changed very much. And they are not a huge problem (never were really) since on most mornings, the headache is mild. When I do have a headache, it sometimes disappears faster than they used to pre-CPAP.

    I seem to much less restless in my sleep---provided the insomnia monster doesn't show up. (And the insomnia monster is slowly being tamed.) Pre-CPAP I rarely woke up in the same position that I went to sleep. This is pretty common now. And I've learned how to get comfortable before falling asleep so that I don't wake up with a stiff neck.

The CBT work on insomnia management is beginning to show benefits. For the first time in my life I can go to bed and often be asleep within 10 or 15 minutes. I'm still waking up multiple times every night, but many times I can get back to sleep in a timely fashion. I've not had a serious meltdown re the insomnia in almost 3 weeks. I am now usually getting at least two hours of uninterrupted sleep between the awakenings. Anxiousness and mind racing during the awakenings still remain a problem, but my body seems much more able to tell the brain to "shut up and go back to sleep" than it ever did pre-CPAP and before the CBT work. But I am still getting a total of only 4 1/2 to 5 1/2 hours of sleep a night with a restricted 6 hour "in bed" window. In spite of that limited time in bed window, however, I am now occasionally waking up feeling "almost refreshed" and often I wake up feeling "decent". Occasionally I wake up just a minute or two before the alarm goes off---ready to get out of bed and face the new day.

Switching the the BiPAP helped address the aerophagia and other pressure-related issues. But notably the theme of aerophagia kept running through my first insomnia log like a broken record; hence the four sleep study---which was a second bi-level titration study. I've only been using the new, lower pressure settings for less than a week. But the resulting drop in pressure has helped helped my stomach and the number of awakenings due to stomach discomfort has decreased.

The long term AHI numbers for both my former Resmed S9 AutoSet and my current PR System One BiPAP Auto look remarkably similar: The vast majority of nights the AHI is below 1.5, with most of them clustering between 0.5 and 1.0. The occasional odd bad night has an AHI more in the 2.5 to 4.5. But there's only been one night (Halloween) that had an AHI higher than 5.0. The long term "average AHI" for the two machines is also pretty close: In the roughly 90 days I used the S9, the overall average AHI was 0.9, with AI = 0.6 and HI = 0.3. In the roughly 50 days I've used the System One, the average AHI is 1.3, with AI = 0.9 and HI = 0.4. So with there's plenty of evidence that xPAP does an excellent job in controlling my apnea episodes.

I have slowly recovered from the severe crash and burn that I suffered through from shortly after I started CPAP on September 23 through late December. Throughout the fall I was a dysfunctional walking zombie by day. In spite of "sleeping" 6, 7, or 8 hours or more with the mask on every night, the daytime exhaustion and the daytime sleepiness were beyond anything I'd ever felt in my life. I looked horrible and colleagues kept asking me what was wrong and how my health was. I had to resign from committees at work, beg off additional assignments from my chair, and did a pretty miserable job of teaching my college level mathematics classes in the Fall 2010 semester. Not only did I not manage to learn any of my students' names, but grading was a constant challenge for the whole semester. I missed turning in grades for one class---had to fill out a change of grade form for each and every student---because I simply could not find the strength, energy, and mental capacity to get the final exams graded in time to figure out the semester grades. Fortunately there were less than 20 students in the class. So the paperwork for the department secretary was not too great. I spent a significant chunk of my winter break working extremely hard on starting the battle with the insomnia and making significant mental steps towards genuinely accepting the BiPAP machine as a positive force in my life rather than "a positive force that has also invited an insomnia monster into my bedroom with its own invasion of my personal space." By the time my classes started in late January, I no longer was consistently feeling like a hairball upchucked by a cat every single day.

Six months into therapy, I can still count on one hand the number of days that I've felt "good". But days where I feel "ok" are increasing in number. And truly disastrous days are declining. [Although at the peak of the lamictal side effects things were touch and go.] My spring allergies are kicking in, so I've got permission from both the PCP and Keryn to take Zyrtec every day most likely until frost. And I've finally gotten brave enough to add nasal irrigation with a NeilMed Sinus Rinse bottle, which is close kin to the neti pot, to my nightly bedtime routine.

Physically how I feel each day now depends on the interplay between the apnea and the insomnia:

    If both are good (AHI < 1.5 and sleep time lost to insomnia < 45 minutes), I have started to pretty decent these days.

    If one of the two is good and the other is less than good, there's are some day time symptoms and problems with functioning, but it's manageable.

    If both are bad, I feel lousy.
Fortunately the lousy days are getting rarer.

Micronaps (which were never a problem pre-CPAP) continue to plague me. On most days I now have some semblance of real functioning and alertness for 5 to 7 hours. Some days I even have a bit more. Teaching has returned to being fun instead of the horrid chore it had become last fall, but grading remains problematic. And along with the micronaps I still have real problems with functioning in the late afternoon and through the evening. But then I "wake up" and become more alert sometime between 10:30 and 11:30 usually. By my PA-dictated bedtime of 1:30AM, I am usually physically very tired, but I am not always mentally sleepy. And when I get sleepy, it happens rapidly with a tendency to trigger some rather bizzare micronapping that is much more disturbing than it is restful.

I am still afraid of falling asleep at the wheel---a problem that first raised its ugly head by the end of September--about a week into CPAP therapy.

And I still don't feel all there cognitively yet either. Pre-CPAP I had an excellent memory both for the day-to-day things and for long term memories. I had an excellent head for details and could manage even though my organizational skills leave something to be desired. I spent all of last fall in a mental fog of the sort that I'd never experienced before. Simply could not keep track of anything---even if I did write it down. While some of my memory is slowly coming back, I feel as though I've lost three months of my life since I remember almost nothing except the pain of trying to live with the CPAP/APAP/BiPAP last fall. Today I still draw blanks when I'm looking for a specific word. My none-too-great spelling has deteriorated at an alarming rate. And I don't always pick up on the things going on around me. I'm very easily distracted and have trouble concentrating.

So all in all, while my body is beginning to notice some subtle changes, my overall energy and daytime functioning still is below what it was last summer. And my sleep remains fragile at this point---I know that if I bend the sleep restriction and sleep hygiene rules too much, I'm feeding the insomnia monster---that shows up in my insomnia log quite clearly. But it is getting better---slowly but surely---now that I'm doing the work I must do to tame that insomnia monster that showed up on Night 3 of CPAP therapy and that has been plaguing me ever since.

Mentally, I think I'm about 90% there in truly accepting the BiPAP. It still causes sensory overload, but not as often as it used to. I still get angry occasionally. And I still have some real, genuine (destructive and) unresolved anger over the apnea diagnosis and the treatment during my own and only meeting with the sleep doctor himself. I'm not yet depressed about the slowness of the progress on the insomnia war: There has been real and undeniable progress on this front.

But I still mourn for many things which I've lost:

    The ability to sleep with my nose in my husband's underarm (silly sounding I know, but it was my favorite sleeping position)

    The ability to go to bed whenever I want. And wake up late on a Saturday or Sunday

    The smell of my husband in bed

    Talking to my husband in bed (and feeling sexy in bed. With the hose on my nose, I just don't feel sexy.)

    The loss of spontaneity of all things sleep related in particular and spontaneity of my life in general

    Caffeine after 10AM. I mainly miss my unsweetened iced tea at lunch. But both hubby's family and mine are prone to "coffee after dinner" which is hard to turn down when we're visiting.

    Late dinners with my hubby---as in as late as 9:00 pm. And large dinners. If I eat much of anything after about 8:00, I run a much higher risk of aerophagia that night.

    The sense of feeling like I'm genuinely healthy.


Best of luck to each of you on your own journey in dealing with this disease. And remember that every journey truly does begin with a single step. And this one begins with the decision each night to put the mask on your nose.
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
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Postby glennotf » Mon Mar 28, 2011 7:39 am

Yesterday afternoon, my kids split. My daughter asked to sleep at maternal grand-parent's home and my son went back to his Mom. They knew I was such a wreck that the typical Sunday night routine--with its attendant stress and anxiety about getting to bed and getting enough sleep--would be something better to avoid.

Yet another apnea impact.

My GF came over. She knew it was an awful afternoon. Lying broken on the couch all afternoon, I watched ALL of the VH1 countdown of top 100 bands of all time.

Ughh.

Yet, GF's presence calmed me. Her being here helped me fell more "normal."

Side note and question:

When I am that exhausted, a drink or two "perks" me up, which seems odd, given that alcohol is a depressant. I know it does this for me and, so, I typically avoid it. I couldn't, yesterday, though. I sipped a couple of tequila shots at around 5 p.m. and "came to life." Yet another strange EDS symptom?

GF stayed. For some strange reason, I felt comfortable enough to invite her into my bed. Before going to sleep, I took out my iPhone (I know...not the best practice, but I use it to play "Hearts of Space," which relaxes me) and I read your replies out loud to her. We both cried.

I am not alone. Neither are you. Knowing others are going through this gives me hope because I know that others must have gotten through it.

Sakura, we will beat this!

Last night, I slept solidly and calmly from 10 p.m. to 5:45 a.m., yet, I don't feel "awake and alert" after this 8 hours of supposedly "perfect" sleep. My data will show I was under 2 events per hour. Why is it, then, that I feel essentially unrested?

I will go to work soon and caffeine myself through the morning. I'll stop by noon. Rest assured, however, the first call I make will be to my GP. I've been on Provigil before and it worked well for me. I stayed on it only for short periods of time. Back then, the working diagnosis was ADD, and the Provigil was for off-label ADD treatment. I found that it left me feeling awake, but not particularly focused. I now believe there was no ADD, only EDS.

Thank you, Nancy, for your comprehensive post. Your entries toward the end about scent and intimacy with your husband drove the point home for me: this simple mask produces profound changes, some of which we're investing our lives in. This is no small "experiment." This is our lives. This is our relationships and our jobs and our hope for facing each day awake and alert. I'm not there today, despite having slept empirically well. The data on my smartcard don't lie, and they don't tell the entire story, either.
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Postby robysue » Mon Mar 28, 2011 9:25 am

glennotf:

One way I found to deal with the very real stress and anxiety about going to bed last fall was this:

I made sure to get as much of the CPAP-related "stuff" dealt with well before bedtime---as in around supper time at the latest: Washed the nasal pillows as soon as I got up in the morning. Put the machine back together for the night at supper time. Filled the humidifier up for the night at supper time. I didn't need to worry to much about fitting the mask since the Swift FX is worn pretty loose and only has two straps. But if I'd been wearing a mask with more extensive headgear, I would have also done a preliminary mask fitting around supper time as well. And I also didn't wait until bedtime to start doing the other bedtime related things either: Two or three hours before I intended to go to bed I'd wash my face and brush my teeth. And by having all of this done well in advance of bedtime, that let me have some badly needed "downtime" before bedtime where I could relax and NOT worry about the dang CPAP machine and all it entailed. And at bedtime, literally the only thing I had to do was the finally potty stop and putting the mask on and getting into bed. Overall, this getting stuff ready well before bedtime did help with taming the anxiety and stress of going to bed. I still rely on this technique when things get complicated and the stress and anxiety of bedtime start to return.

Yet, GF's presence calmed me. Her being here helped me fell more "normal."
It's good you have your GF's support in all this. I can't even begin to list all the ways my hubby has helped me through this difficult time. And through it all, his ability to help me feel "normal" instead of feeling like a freak has been critical.

When I am that exhausted, a drink or two "perks" me up, which seems odd, given that alcohol is a depressant. I know it does this for me and, so, I typically avoid it. I couldn't, yesterday, though. I sipped a couple of tequila shots at around 5 p.m. and "came to life." Yet another strange EDS symptom?
Probably NOT an EDS symptom. People react differently to alcohol. And the fact that alcohol makes socializing easier for some (many?) is well known. As you observe, however, alcohol is a sedative though. But even though the alcohol is a sedative, it can disrupt the sleep cycles of many: Too much alcohol or alcohol too close to the sleep period can lead to fractured sleep; an increase in the number of arousals/awakenings in the second half of the night; and problems getting into and sustaining both slow wave sleep and REM sleep. The usual insomnia guidelines for alcohol use are:

    Limit the number of drinks to no more than one or two per day.

    No alcohol after supper---and ESPECIALLY no alcohol right before bedtime.

    If there is evidence of restless sleep on nights after having a drink or two with dinner, then try to eliminate alcohol after 3:00 pm or so. [In other words, a beer with lunch may be ok, but a beer with supper can cause problems.]
As for OSA and alcohol, some people do see an uptick in the AHI on nights where they've consumed moderate amounts of alcohol during the evening. Others don't.

GF stayed. For some strange reason, I felt comfortable enough to invite her into my bed.
Although you may not recognize it as such, this is a MAJOR indication that you are coming to grips with the necessity of adjusting to CPAP. As unbelievable as it sounds now, eventually masking up will be just another bedtime habit for you. And the fact that you felt comfortable enough to invite your GF to bed indicates your mind is already beginning to move in that direction. And the fact that she accepted indicates that SHE understands and accepts this is the way it's going to be from now on. That's a really good thing to have going for you!

Last night, I slept solidly and calmly from 10 p.m. to 5:45 a.m., yet, I don't feel "awake and alert" after this 8 hours of supposedly "perfect" sleep. My data will show I was under 2 events per hour. Why is it, then, that I feel essentially unrested?
There are some folks who will tell you that you've got to make up a sleep debt that you've been incurring for years. There may be some truth in that idea, but I'm not sure I buy it completely.

My own pet theory based on my experience (as detailed in that long, long post) is that there's a tremendous amount of stuff that your mind, body, and soul have to learn to accept as the new normal when you first start using CPAP. The physical stimuli from the machine can lead to arousals which you may or may not remember. The mental stress of accepting both the diagnosis of sleep apnea and the need for such a bizarre treatment can lead to problems with getting to sleep and staying asleep. Worrying about sleep (both quality and quantity) when you are trying to sleep is NEVER a good thing. But we all do it sometimes. And I think many of us spend an extraordinary amount of time worrying about our sleep when we first start out on CPAP for obvious reasons.

Good luck with the call to your GP. And if he approves the Provigil, good luck with that too in helping you focus during the daytime.

Thank you, Nancy, for your comprehensive post. Your entries toward the end about scent and intimacy with your husband drove the point home for me: this simple mask produces profound changes, some of which we're investing our lives in. This is no small "experiment." This is our lives. This is our relationships and our jobs and our hope for facing each day awake and alert. I'm not there today, despite having slept empirically well. The data on my smartcard don't lie, and they don't tell the entire story, either.
I think you mean my post. (But there's no offense taken at grabbing the wrong poster's name.)

You are right: Accepting wearing th emask does produce profound changes and it is not a small experiment. Some of those changes are not positive. But the overall large picture of the changes should in the long run be more positive than negative. And that's what we don't want to lose sight of when we're struggling to make this crazy therapy work for us.

Best of luck,
robysue
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
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Postby glennotf » Mon Mar 28, 2011 9:49 am

RobySue, it was u. :-D

Thank you, again.

Glenn
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Postby Vigilute » Mon Mar 28, 2011 8:26 pm

glennotf wrote:
Last night, I slept solidly and calmly from 10 p.m. to 5:45 a.m., yet, I don't feel "awake and alert" after this 8 hours of supposedly "perfect" sleep. My data will show I was under 2 events per hour. Why is it, then, that I feel essentially unrested?


glennotf,

You're doing quite well sleeping nearly 8 hours without interruption. I have been on CPAP for ~7weeks and I only sleep 3-4 hours straight without waking due to a leak, or waking due to soreness and needing to roll over. However, you will not necessarily feel good or even better right away - it takes time to readjust to getting good quality sleep. When I wake up now, I feel groggy and have to sit a few minutes on the edge of the bed to come to my senses enough to get going. I actually feel more tired when I get up now than before CPAP - but I think I'm healthier now because my blood pressure is lower and I don't wake up during the night sweating or with a racing heartbeat. I don't know why this is so, but I think it is part of the healing process and will take several months on xPAP to start feeling better.
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3M Micropore (Nexcare Gentle Paper) tape across my mouth
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Postby SleepyToo » Mon Mar 28, 2011 8:51 pm

glenotf, this sleep apnea thing has terrible effects in some people - I consider that I was one of the lucky ones in getting diagnosed before I had "major" symptoms. Or maybe it was that I was able to ignore them? However, I still feel that I am recovering some 16 months after starting treatment. I had a brain MRI that showed some tissue degradation, and I feel that it is taking time to recover from that. I had a lot of difficulty with making decisions. Money management, like yours, became a mess. Slowly recovering. Do I feel unfairly treated with the cards of life? Sure. Do I want to give up this slow treatment? No way. The effects of not treating are far worse than those of treating it.

My chiropractor says that as part of the healing process we often go backwards before we get to where we were before the "illness" started. From that perspective, the feeling like c&*( in the morning is a GOOD sign. I know that it gets old very quickly, though. I am seeing benefits of treatment, though - my AHI is down around 1.7, I rarely wake for a bathroom break during the night, and migraines that used to occur weekly are now a rarity, and less severe when I do get them.

I know that some of my challenges now include making sure I get a good 8 hours sleep EVERY night, and go to bed at a reasonable time so that I am not sleeping late into the morning. I also know to rejoice in those good days, and think of them on those days when things are not so good. One day I am sure you will discover that good days outnumber the bad.

Good luck, and please keep on with the CPAP. Also, let us know how you are getting on - even if it is just to vent from time to time!
SleepyToo
Philadelphia Area
Diagnosed September 2009, Respironics System One w/ C-flex and humidifier
Aloha nasal pillows
Not a medical professional, just a patient with severe OSA (31) who has done a lot of reading.
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Postby glennotf » Thu Mar 31, 2011 1:49 pm

Update:

I just got off the phone with the Sleep Clinic doctor. Let me say, first, that I respect this sleep center. It's accredited and has a very good reputation. I went to a pulmonary center years ago, and my apnea was totally missed. So, until now, they've done well by me.

This doc is a pulmonologist. I sent him a fax with my sleep logs and with a note my GF suggested I append. In that note, I describe, in detail, the symptoms I've been experiencing since before the cpap and, also, after. The symptom list most certainly looks like a description of depression. But, I'm not feeling depressed. I'm feeling tired. The very first thing he said to me was, "Are you seeing a psychiatrist?"

He looks at my sleep logs. It looks like consolidated sleep. He looks at the smartcard data. It looks like good breathing. He looks at my laundry list of symptoms and, to him, it screams "clinical depression."

Now, I've been an open-minded consumer of both psychological and psychiatric treatment. I've tried various meds, and none seemed to address what felt like the core issue, which is that when I don't sleep well, I get tired, cranky, sad, and unfocused. The only antidepressant that's ever had *any* positive benefit was Wellbutrin, but it also tended to increase insomnia. Uggh. Still, it kept me awake.

The sleep doctor insists that the smartcard data don't lie. My sleep apnea is now treated, so there is, in his words, "no way" I could still be sleepy enough to feel lazy and sad.

Yet, on the occasional night that my perection of sleep quality matches the "objective" data, I wake and go through the day with a smile on my face.

The doc said there is no way someone who is successfully treated with apnea could still feel tired to the point of tears.

Do you agree with him?
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Postby sakura » Thu Mar 31, 2011 3:40 pm

Absolutely not!

He's blinding himself to the huge variability that is proven to exist in the response of the human organism to a stimulus. Probably because has difficulty, psychologically and empathically, in dealing with such ambiguity and his frustration at not knowing how to fix things. I call this syndrome Blinded Medical Service Professional. It's not unusual for a doctor or other MSP to forget that their ethical role is properly that of a practioner-scientist. IMO, he has failed in that role, and your situation merits serious consideration whether you can continue to work with him, which would include having to educate him also, or should find another provider.

Having said that, I don't know whether you have some depression, or not.

How's your sleep hygiene? I think it's worth looking at what grade you'd get on that front. Finally, do you have any problems at all with comfort, leaks, etc.? How about any other medical conditions, including pain/discomfort?

I will also share with you that studies have proven extremely poor reliability in all mental health diagnoses. If you go to 3 mental health professionals, you will probably get 4 different labels of dysfunction stuck to you! This does not mean these concepts are bad or wrong, just that they have to be taken with a grain of salt, and weighed against both your understanding, experience, and beliefs as well as the state-of-the-art knowledge of the field (of psychology). I doubt your sleep dr is well-enough trained to make that assessment--heck, many mental health professionals aren't!

There's a simple, straightforward way to gather more information. Stop using the cpap machine for a period of time, and continue logging your frame of mind and energy level. FIRST, make yourself fully aware of potential consequences in terms of both treatment and insurance coverage!!

I've more I would say, but am out of time. I hope to post my own "case study" in the near future, to make the information of my experience available to those seeking answers. Briefly, I was asymptomatic before treatment and suffered significant deterioration in daytime functioning during several months of treatment. My dr explored everything and nothing we tried made any improvement. She suggested going without the cpap for a while and continuing to monitor things. I'm trying this to see what I can discover. I'm also keeping in mind that it is nowhere near 100% of people with OSA who suffer early stroke, heart attack, etc. at any early age.

Sometimes the cure really is worse than the disease.
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Postby Janknitz » Thu Mar 31, 2011 3:52 pm

Wellbutrin does cause TEMPORARY insomnia, but after a few weeks that stops. So you have to give it time.

You've been feeling so badly that it's worth a try.
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