so very tired and it isn't getting better
Re: so very tired and it isn't getting better
Wondering how 12.2 has been faring, Mar...
- robertmarilyn
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Re: so very tired and it isn't getting better
So far so good, mostly . I had an extremely short night last night because my husband's new computer arrived yesterday evening and I put in a long night setting it up and working with the tech folks at his job as tech for an ISP, to get all the applications and such installed on the new computer and data transferred from the old computer. I don't like having such short nights but I'm using this one for a good cause. I'm working on shifting my sleep hours to an earlier go to bed time/get up time.-SWS wrote:Wondering how 12.2 has been faring, Mar...
So I slept 4 hours last night, getting up at my new bed time. (And didn't check those stats...just got back to work on the computer setup. My best AHIs are always during the first 3 hours when I still seem to be sleeping lightly). Tonight I don't think I will have any trouble getting to sleep at my new earlier time...I'll see what the stats are in the morning when I have had a nice 8+ hours of sleep.
One thing I have noticed over the last 4 or so days is that I have had slight symptoms of aerophagia and maybe a little heartburn feeling. I think this started shortly before I bumped up the pressure by .2
I've been very good about not eating at least 3 hours before bed, very careful about what I drink and when, and the head of my bed is raised and I am taking my reflux meds. I'll see how I do tonight, I think when I get into deep sleep, which for me almost always is after I have been sleeping for 3 or more hours, is when the aerophagia wants to kick in...and when it kicks in, its hard to move around easily in the morning because my chest/torso feel uncomfortable.
My follow up appointment with the gastro doctor is May 19 so I will be able to discuss this with him and the PA. Otherwise, I have been feeling more rested...which is something new for me! I suspect that my optimal machine range might be in a place were my best readings and the start of aerophagia/acid reflux meet or overlap. So that is an area I'll want to get sorted out. Right now I think that acid reflux isn't as much of a problem as aerophagia. The meds seem to be helping to keep things down in my stomach but I am having trouble keeping air OUT of my stomach.
When I have my new sleep test on June 2, there are a lot to things that my doctor wants to watch closely...she is very interested in the type of arousals I am having, wants to see how I handle a variety of machine variations, and she wants to see what happens when I sleep in various positions. She doesn't want me to sleep on my back at home but she mentioned that testing me while I am sleeping on my back in the lab, with more sensors on me than were on me in my two recent tests with the other doctor, may give her a better understanding of what my be going on with me. She thinks I have Narcolepsy along with other things and if I understand it correctly some things that my body may do when I sleep are indicators of Narcolepsy.
Know what...I know I wouldn't do well on 4 hours sleep every night but because I don't get into the really deep sleep when I sleep a short night, in a way I wake up feeling better than when I get the really deep sleeps. Since I seem to have a lot more episodes in deep sleep, I also don't wake up feeling as well. We're working on it though...and that is why I want to have my lifestyle habits up to snuff...so that when I go for my sleep test I will be able to relax and have as little lifestyle clutter interfere with the test as possible.
Oh -SWS, when folks talk about how smart and intellectual you are...I crack up because your icon fits the description.....that is, if intellectual and primate can be used in the same sentence
mar
Re: so very tired and it isn't getting better
Mar, I have noticed that aerophagia, acid reflux, and even LES closure in general can be highly variable from night-to-night---but especially week-to-week, month-to-month, etc.. I think the idea is to keep just as many exacerbating factors in check as possible.robertmarilyn wrote: One thing I have noticed over the last 4 or so days is that I have had slight symptoms of aerophagia and maybe a little heartburn feeling. I think this started shortly before I bumped up the pressure by .2
She wants to present a variety of challenges to your physiology. That, in turn, helps her get a handle on underlying etiology as well as how to best treat those problem(s). She sure sounds like a "good 'un" as Rested Gal says.robertmarilyn wrote:When I have my new sleep test on June 2, there are a lot to things that my doctor wants to watch closely...she is very interested in the type of arousals I am having, wants to see how I handle a variety of machine variations, and she wants to see what happens when I sleep in various positions.
We recently discussed diagnostic criteria for narcolepsy HERE.robertmarilyn wrote: She thinks I have Narcolepsy along with other things and if I understand it correctly some things that my body may do when I sleep are indicators of Narcolepsy.
I would point out that smart monkeys don't smoke. Involuntary birth traits such as intelligence or physical stature never impress me. They are never true measures of any person IMHO...robertmarilyn wrote: Oh -SWS, when folks talk about how smart and intellectual you are...I crack up because your icon fits the description.....that is, if intellectual and primate can be used in the same sentence
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Re: so very tired and it isn't getting better
-SWS wrote: Mar, I have noticed that aerophagia, acid reflux, and even LES closure in general can be highly variable from night-to-night---but especially week-to-week, month-to-month, etc.. I think the idea is to keep just as many exacerbating factors in check as possible.
That's kind of what I thought...I'm at the best place I've been so far with the machine and the problems have been so much milder than they were when I first started therapy.
She wants to present a variety of challenges to your physiology. That, in turn, helps her get a handle on underlying etiology as well as how to best treat those problem(s). She sure sounds like a "good 'un" as Rested Gal says.
I know...we'll be getting useful information out of the test and that means the world to me.
We recently discussed diagnostic criteria for narcolepsy HERE.
Thanks, I'll go look at that thread. I'd done some research online.
I would point out that smart monkeys don't smoke. Involuntary birth traits such as intelligence or physical stature never impress me. They are never true measures of any person IMHO..
I do always have the urge to bring up the smoking bit to you but since I'm sure it's photoshopped , I've let it go so far. And you are right about people: heart, compassion, generosity...are what make a difference and have nothing to do with IQ and looks...in fact, sometimes IQ and looks can be a hindrance if a person lets those things go to their head
mar
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Re: so very tired and it isn't getting better
I'm not finished reading through the thread yet...but this part (in red) from SAGmorphedMuffy made me laugh...of course it isn't really funny but kind of is and finding the funny in things is a big help to me in life-SWS wrote: We recently discussed diagnostic criteria for narcolepsy HERE.
SAG said:
Well, "IMHO", the only thing that would make this typical presentation atypical would be if Bev actually turns out to have 4 out of 4 of the tetrad (the symptoms typically associated with N., namely EDS, cataplexy, sleep paralysis, and auditory and visual hallucinations). That likelihood, at about 15%, would be a gift from God (diagnostically speaking, that is)(narcolepsy itself wouldn't be a gift from God)(or at least a very good gift, anyway)(of course, put into perspective, considering all of the other potential gifts from God, like plague, locusts, balls of fire, leprosy, etc. I imagine you could do a lot worse than N.).
Yeah, there is always a way to put things in perspective to help us remember how good we really DO have things, even if things aren't the way we would prefer them to be.
And talking about the symptoms typically associated with N, the new doctor asked all kinds of detailed questions about the things mentioned above, some of which I didn't understand at first because I wasn't familiar with the terms at the time (looked them up later) and wow, I fit the the symptoms...I just didn't know how much more to Narcolepsy there was than the tiny bit I was familiar with.
mar
Re: so very tired and it isn't getting better
Well, undiagnosed narcolepsy sure would fit your thread's title, Mar. Do any of these narcoleptic criteria seem like either "maybe" or "definitely" traits---at least as far as you can tell:
Minimal Criteria: (B plus C) or (A plus D plus E plus G)2007 discussion of two combinatorial ways to achieve a standard narcolepsy diagnosis wrote: Narcolepsy diagnostic criteria is listed below (note the dark red text delineating two alternative criteria categories):So in recap, to receive a narcolepsy diagnosis, patients would need to meet one of these two diagnostic criteria categories: 1) B plus C, or 2) A plus D plus E plus G. Since either category is considered a diagnostic minimum, some narcolepsy patients will manifest presentations from both of these diagnostic categories. Note that F (a genetic marker) and H are presently listed as consideration factors only.In Defining Diagnostic Criteria for Narcolepsy the ICSD wrote: Minimal Criteria: B plus C, or A plus D plus E plus G.
A. The patient has a complaint of excessive sleepiness or sudden muscle weakness.
B. Recurrent daytime naps or lapses into sleep occur almost daily for at least 3 months.
C. Sudden bilateral loss of postural muscle tone occurs in association with intense emotion (cataplexy).
D. Associated features include:
1. Sleep paralysis
2. Hypnagogic hallucinations
3. Automatic behaviors
4. Disrupted major sleep episode
E. Polysomnography demonstrates one or more of the following:
1. Sleep latency less than 10 minutes
2. REM sleep latency less than 20 minutes
3. An MSLT that demonstrates a mean sleep latency of less than 5 minutes
4. Two or more sleep-onset REM periods
F. HLA typing demonstrates DQB1*0602 or DR2 positivity.
G. No medical or mental disorder accounts for the symptoms.
H. Other sleep disorders (e.g., periodic limb movement disorder or central sleep apnea syndrome) may be present but are not the primary cause of the symptoms.
- robertmarilyn
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050909
Last night I fell asleep pretty quickly at about 9:30 but after a few hours I was tossing and turning...I felt like I was having a hard time breathing so I eventually got up and read for a couple of hours and then went back to bed and slept. I see that what I when I thought I was awake tossing and turning, I must have been dozing off while tossing and turning because there are hypopneas and apneas up until I turned my machine off at two am.
Or maybe I only need to be barely asleep to have apneas and hypopneas? I didn't look at last night's results until just before uploading this but I do know that from the time I got up this morning, a little after 8am, I didn't feel rested (but that's how I usually feel so that's not new )



Or maybe I only need to be barely asleep to have apneas and hypopneas? I didn't look at last night's results until just before uploading this but I do know that from the time I got up this morning, a little after 8am, I didn't feel rested (but that's how I usually feel so that's not new )



Last edited by robertmarilyn on Sun May 10, 2009 4:26 pm, edited 1 time in total.
Re: so very tired and it isn't getting better
Mar, my understanding is this is a correct statement:
Many of us do experience apneas and/or hypopneas during that wake/stage-1 transition. And we can also oscillate back and forth between wake and stage 1, without realizing that we are repeatedly entering stage 1.robertmarilyn wrote:Or maybe I only need to be barely asleep to have apneas and hypopneas?
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Re: so very tired and it isn't getting better
Minimal Criteria: (B plus C) or (A plus D plus E plus G)-SWS wrote:Well, undiagnosed narcolepsy sure would fit your thread's title, Mar. Do any of these narcoleptic criteria seem like either "maybe" or "definitely" traits---at least as far as you can tell:
Now that I have been reading up on Narcolepsy, I do see how well the title of this thread fits!
2007 discussion of two combinatorial ways to achieve a standard narcolepsy diagnosis wrote: Narcolepsy diagnostic criteria is listed below (note the dark red text delineating two alternative criteria categories):In Defining Diagnostic Criteria for Narcolepsy the ICSD wrote: Minimal Criteria: B plus C, or A plus D plus E plus G.
A. The patient has a complaint of excessive sleepiness or sudden muscle weakness.
The patient has a complaint of excessive sleepiness - yes definitely
B. Recurrent daytime naps or lapses into sleep occur almost daily for at least 3 months.
I've felt the need for naps every day, all my life. And will fall asleep any time I am in a car and not driving
C. Sudden bilateral loss of postural muscle tone occurs in association with intense emotion (cataplexy).
Not that I know of
D. Associated features include:
1. Sleep paralysis
During my childhood until about 30, about once a month I would be sleeping and having a dream or think I heard the doorbell and I would wake up and not be able to move at all, which would be pretty scary
2. Hypnagogic hallucinations
Yes
3. Automatic behaviors
Not that I know of
4. Disrupted major sleep episode
Yes
E. Polysomnography demonstrates one or more of the following:
1. Sleep latency less than 10 minutes
10.5 minutes on my test without the machine; 21 minutes on my titration test (major mask discomfort made it hard to go to sleep)
2. REM sleep latency less than 20 minutes
212.5 minutes on test without the machine; no REM on my titration test
3. An MSLT that demonstrates a mean sleep latency of less than 5 minutes
First ever MSLT will be June 3
4. Two or more sleep-onset REM periods
My two sleep studies in Feb don't make this clear (except that there was no REM on the titration study...I may have been too busy with acid reflux to have been able to fall asleep deeply (bile entering throat and mouth I didn't know I had an acid reflux problem before that first night on a machine)
F. HLA typing demonstrates DQB1*0602 or DR2 positivity.
Even after some reading about this, I don't really understand what this is...does it have to do with whether my parents have sleep problems? Because, I think I inherited problems from both my mom (disrupted sleep and signs of sleep apnea) and dad (he certainly has the signs of narcolepsy now that I know what they are)
G. No medical or mental disorder accounts for the symptoms.
I saw a psychiatrist for once a week for three months before my UPPP. He tried me on a slew of antidepressants, some which absolutely knocked me out and I would wake up feeling very bad...I think the knock out ones shut down my breathing while asleep even more than I was already doing. I wouldn't take those after one night. After three months of nothing happening with the psych visits, I ONCE AGAIN told him I thought I might have sleep apnea and that I was going to see another doctor.
This is when the psych called a neurologist and got me in that day because the psych said that after no meds helping me, he wanted me to be accessed for a possible brain tumor. Just by looking at my eye movements and my how my body responded to being knocked on the knee with a little hammer the neurologist started a bunch of tests...it was obvious to him that I had something major going on and it was not due to a mental disorder.
According to the cardiologist I had to see, my heart showed some damage (he said that I showed signs of having had a "silent" heart attack). An MRI was done on my head, neck, and torso, a workup was done by a pulmonary doc, and I had a sleep test done in a hospital.
Obstructive sleep apnea would have accounted for some of my symptoms. I did have a UPPP after all the tests.
H. Other sleep disorders (e.g., periodic limb movement disorder or central sleep apnea syndrome) may be present but are not the primary cause of the symptoms.
I may have both of those but my Feb sleep tests don't make mention of them. After my UPPP, I was told that my body was so used to not keeping me breathing all the time like it was supposed to do (because of the obstructive sleep apnea) that my brain still might not always keep me breathing...once I learned what central sleep apnea was, I thought that might be what they were describing.
So in recap, to receive a narcolepsy diagnosis, patients would need to meet one of these two diagnostic criteria categories: 1) B plus C, or 2) A plus D plus E plus G. Since either category is considered a diagnostic minimum, some narcolepsy patients will manifest presentations from both of these diagnostic categories. Note that F (a genetic marker) and H are presently listed as consideration factors only.
So:
A - yes
D - yes
E - can't tell from my Feb sleep test...have another sleep test on June 2 and a MLST on June 3. Put me in a car and start driving and I think I can have all kinds of REM with short latency times...and I can easily nap several times a day if I allowed myself to do so.
G - yes (I think...I've had a lot of medical problems but not sure what came first, medical problems or sleep problems)
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Re: so very tired and it isn't getting better
That was very interesting to see how much I thought I was awake during that time...no wonder there are times when I will look at a clock, think I slept for a while but find that when I look at the clock again, only a minute will have passed.-SWS wrote:Mar, my understanding is this is a correct statement:Many of us do experience apneas and/or hypopneas during that wake/stage-1 transition. And we can also oscillate back and forth between wake and stage 1, without realizing that we are repeatedly entering stage 1.robertmarilyn wrote:Or maybe I only need to be barely asleep to have apneas and hypopneas?
I remember being very young and thinking I was awake all night long but now I realize I was probably going in and out of sleep all night long due to my body waking me up when I wasn't breathing.
Am I correct to assume that hypopneas and apneas are not good even in this transition? Or are those hypopneas and apneas being caused by breath holding when changing positions and in that regards don't matter very much?
Re: so very tired and it isn't getting better
Those apneas and hypopneas tend to be related to somewhat common ventilatory instability, during the sleep onset transition. That transitional period can be somewhat tricky for central breathing, where CO2 based homeostatic adaptation to sleep itself occurs:robertmarilyn wrote: Am I correct to assume that hypopneas and apneas are not good even in this transition? Or are those hypopneas and apneas being caused by breath holding when changing positions and in that regards don't matter very much?
http://jap.physiology.org/cgi/content/a ... /99/5/2036
Other then making for a rough transition or even barrier to sleep, they can be of little consequence---as long as they are of such short durations that oxygen desaturation (hypoxemia) does not result in cellular damage (hypoxia).
- robertmarilyn
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Re: so very tired and it isn't getting better
We will know more once my night and day tests are completed. I do think going in and out of wake/sleep, isn't very restful.-SWS wrote:They tend to be related to somewhat common ventilatory instability during sleep onset. That can be a tricky transitional time for central breathing, where CO2 based homeostatic adaptation to sleep occurs:robertmarilyn wrote: Am I correct to assume that hypopneas and apneas are not good even in this transition? Or are those hypopneas and apneas being caused by breath holding when changing positions and in that regards don't matter very much?
http://jap.physiology.org/cgi/content/a ... /99/5/2036
Other than making for a rough transition or even barrier to sleep, they can be of little consequence---if they are of such short durations that hypoxemia or oxygen desaturation does not result in hypoxia (cellular damage).
Thanks and happy Mother's Day
mar
Re: so very tired and it isn't getting better
robertmarilyn wrote:Thanks and happy Mother's Day
mar
Thanks... but I haven't adopted a female persona just yet. That's Muffy. But I am a quirky SOB!
- robertmarilyn
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Re: so very tired and it isn't getting better
Oh, I know you haven't morphed like SagMuffy did...but when I called my mom to tell her happy Mother's Day, I told my dad the same thing when he got on the line. Not that you remind me of my dad or anything-SWS wrote:Thanks... but I haven't adopted a female persona just yet. That's Muffy.robertmarilyn wrote:Thanks and happy Mother's Day
mar
mar
Re: so very tired and it isn't getting better
Mar, about cataplexy, it is not always a complete collapse, but can be a weakening, dropping of the jaw, or slumping. Makes it not always easily recognizable.
I haven't done this in a very long time, but when I was at my worst and still working, I would feel my head fall forward, then my shoulders would slump, then my entire upper body would collapse on the desk. Even happened in front of a coworker. I was aware but unable to stop it. Shortly I would be able lift myself upright. Don't know if this was cataplexy, but it sure fits some descriptions I've read. I probably do have a mild case of narcolepsy based on other criteria, but my limb movements make it hard to get a nap test free of them. It would explain a lot regarding my sometimes odd sleep sessions that overtake me at any time. When it happens, my family can't even wake me for several hours at a time sitting in a chair. I have to wake up on my own. Sometimes I vaguely remembered them trying to wake me but just couldn't react, others I didn't even remember. Odd since those daytime episodes are without sleep meds to stop my jerking or help me sleep. Usually my sleep is fractured and I wake too easily even with meds, but these spells are a totally different feeling. There are times I'll feel a familiar sensation and rush to sit because I know I'm on my way out, but usually by the time I become aware of it I'm too far gone. Don't spend much time being sleepy because I'm either awake or asleep. With Provigil, I take 2-3 naps and am awake the rest of a day. Without it, I doze in and out the entire day, rarely fully alert.
I am following your journey with much interest, especially in seeing how your MSLT turns out. Hope you get answers and relief.
Kathy
I haven't done this in a very long time, but when I was at my worst and still working, I would feel my head fall forward, then my shoulders would slump, then my entire upper body would collapse on the desk. Even happened in front of a coworker. I was aware but unable to stop it. Shortly I would be able lift myself upright. Don't know if this was cataplexy, but it sure fits some descriptions I've read. I probably do have a mild case of narcolepsy based on other criteria, but my limb movements make it hard to get a nap test free of them. It would explain a lot regarding my sometimes odd sleep sessions that overtake me at any time. When it happens, my family can't even wake me for several hours at a time sitting in a chair. I have to wake up on my own. Sometimes I vaguely remembered them trying to wake me but just couldn't react, others I didn't even remember. Odd since those daytime episodes are without sleep meds to stop my jerking or help me sleep. Usually my sleep is fractured and I wake too easily even with meds, but these spells are a totally different feeling. There are times I'll feel a familiar sensation and rush to sit because I know I'm on my way out, but usually by the time I become aware of it I'm too far gone. Don't spend much time being sleepy because I'm either awake or asleep. With Provigil, I take 2-3 naps and am awake the rest of a day. Without it, I doze in and out the entire day, rarely fully alert.
I am following your journey with much interest, especially in seeing how your MSLT turns out. Hope you get answers and relief.
Kathy
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