so very tired and it isn't getting better

robertmarilyn · Post by **robertmarilyn** » Sun May 10, 2009 5:57 pm

kteague wrote: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.

What is happening with you does sound like cataplexy to me...at least more than anything that has happened to me since I can't remember anything like what you describe happening

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.

Wait, something kind of like this does happen to me. From the time of 5am to 10am, when I 'feel' like I am getting the deepest sleep, if my husband tries to wake me up, it it almost impossible to do so. I just cannot wake up when I am in THAT kind of sleep (whatever THAT is). My cat can be on top of me beating me with her little paws and I won't even know it (my husband will tell me about it). Nothing can get through to me at this time.

My husband has HAD to get me up during this time, when one of my horses has had a belly ache (can be a big emergency so if anything can make me get up that would be it) and I have crawled out of bed and done whatever my horse needed but it is really hard because I feel like I could just go back to sleep if only I sat down for a moment.

So my husband and I know that we need to let me just wake up on my own during that time frame...if I wake up on my own I seem to be a lot better off.

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 will probably start taking Provigil as soon as I've done the sleep tests. The doctor thinks I fit all three of the approved reasons to take it: residual sleep apnea, narcolepsy, and shift work sleep disorder (circadian rhythm sleep disorders). I would think there is a good potential that I will get some help out of taking it.

I am following your journey with much interest, especially in seeing how your MSLT turns out. Hope you get answers and relief.

I really appreciate your writing and telling me about your experience with what could be cataplexy. And I may have some questions for you about Provigil once I start using it.

mar

SaltLakeJan · Post by **SaltLakeJan** » Mon May 11, 2009 2:55 pm

Hello Mar,
Thanks for the message. It did help, but I can't get the transaction completed. The posts either deliver half of themselves to my screen, or they just transfer the address. This is a duplicate of my message of ffffffffrustration I sent as a PM.

If you are in my neighborhood, please post or somethin' I use the the same technique each time. but what a mess. Maybe I've lost half my brain. Maybe more than half.
Jan

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 2:58 pm

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 3:00 pm

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 3:12 pm

I've just posted the last two nights on my machine. The change between each night was that I moved the EPR from a setting of 2 to a setting of 1. This caused the median pressure to go from 10.5 on 051009 to a median pressure of 11.4 on 051109. Last night I was aware of waking up very briefly when my mouth would allow air to escape between my lips. I think the air might have been escaping as I was trying to exhale...rather than being able to completely exhale through my nose all the time, my lips gave way

I didn't notice this so much the night before but that same thing still might explain the leaks that are on the chart. I think I have less leakage on an CPAP level of 12.0 and EPR of 3...I may be in a bit of a bind in that my AHI would go down more if I could raise the pressure but my loose LES will not allow it since raising the pressure brings on acid reflux and aerophagia.

I posted these nights as a tie-in to a things that -SWS mentions in this thread viewtopic/t41749/Need-Resmed-education.html#p367808

mar

ozij · Post by **ozij** » Tue May 12, 2009 8:42 pm

It looks like a pretty impressive correlation of leaks and events - on both nights.
With EPR 1 you spend half the time in apnea than you do on EPR 3. Two nights' data may be misleading - but its worth tracking those two facts.

O.

robertmarilyn · Post by **robertmarilyn** » Tue May 12, 2009 11:07 pm

ozij wrote:It looks like a pretty impressive correlation of leaks and events - on both nights.
With EPR 1 you spend half the time in apnea than you do on EPR 3. Two nights' data may be misleading - but its worth tracking those two facts.
O.

Hi ozij,

I will stay on CPAP 12.2 EPR 1 for a while to see how things progress. My deep sleep (at least it's the time that I don't seem to be aware of waking up and that is the hardest sleep from me to wake up from if someone tries to wake me up) is usually during the hours of 5-9am. And on both these charts, that is where the leaking in taking place. And...most of the apneas. Many of my other nights also will show that the most clusters of apneas of mine, take place during this time (even if I have a lot of hypopneas and apneas at other times too.)

I "think" those apneas might have happened anyway, even if I wasn't leaking, when I have been on less pressure. But I think the leaking usually isn't there when I am on less pressure. That amount of leaking is very unusual for me but just the slightest pressure increase above the pressure of 12 would probably cause more leaking.

On my Feb titration test, I never got into Rem sleep and I think that fact didn't allow what was really happening to me when I sleep show up. Not that the sleep doctor will release any more than his three page summary anyway so it is hard to tell know much of what was going on. My June 2 night/day test should show us a lot since my new doctor WANTS to know a lot about what is going on with me and she wants the test to include an adequate amount of REM. I will be at the clinic for at least 20 hours for the tests.

Also the new doctor is going to make sure I have a full face mask to use during the test, if I need to use a mask other than my Swift LT for Her. And I do think it will be necessary to use a full face mask to prevent leaks if the pressure goes up higher than 12 during the testing. At 12 and below, using my chin strap usually shows almost no leaks at anytime. The one time I tried taping, I was having acid reflux problems (about 6 weeks ago) and I felt uncomfortable taping if I might throw up and haven't tried taping again.

Thanks Ozij,
mar

SaltLakeJan · Post by **SaltLakeJan** » Wed May 13, 2009 4:42 pm

Hello Mar,
Strange correlation between 5-9 a.m DEEP sleep and the leaks. You and I are a work in progress.

Your description of Far West Texas, your privacy and the freedom (when you are well enough) to be able to do endurance rides creates a personal utopia. I hope/believe with the close attention of your new sleep doctor, together you will solve your most pressing problems. Then, you'll find the joy you and your DH need in your lives. You are headed in the right direction - I can sense you are getting closer all the time.

And you mention the surgery to tighten our mutual problem -LES - I have been on acid suppressors before Proton Pump Inhibitors. I would like to eliminate those from my life, but I have had the tests, & my doctor informed me "I am not a candidate for surgery." I was in his office a couple of weeks ago, asked him if there is another option for me. The short answer was "no". So on with the PPI's, he is considering changing my drug to Aciphex, we will see what happens.

Your commiseration was very kind regarding my night time noisy neighborhood. We live in a cul-de-sac and contrary to my description, they are a friendly, interesting group -- They really aren't what you would call, very considerate, but we all get along well. A College Prof, a Social Worker, A contractor plus teen age daughters, a few retired. We are all friendly, but none of us live in each other's pocket - If I had problems, I could call on any of them in a minute, & get the help I needed.

Last December when I had a sleep study, I discovered what it was like to sleep in a dark, quiet room. When I came home DH & I discussed the changes we could make to our bedroom. We had new floor to ceiling drapes with a blackout lining. Then we added as much insulation as they could get in the ceiling and walls. . It made a different environment, and is bright and sunny in the daytime, and the right amount of darkness when we sleep. Before the new drapes, we had shutters on the windows. I liked the look, but at night my neighbor's flood lights penetrated the little slits in shutters. She has the habit of turning them off and on, while her dogs are outside. Our bed was positioned so the powerful light could penetrate the slits, it was bright enough I would awake several times at night. She is a good friend of mine, never married and her dogs are her babies. I understand and like her.

I wanted to add to my thoughts about your sign in ID. I knew your name was Marilyn, when I though of you, I pronounced your name Mare. Just as though I began to say Marilyn. It is a lovely name for a awesome person.

Jan

robertmarilyn · Post by **robertmarilyn** » Wed May 13, 2009 4:55 pm

SaltLakeJan wrote:Hello Mar,
Last December when I had a sleep study, I discovered what it was like to sleep in a dark, quiet room. When I came home DH & I discussed the changes we could make to our bedroom. We had new floor to ceiling drapes with a blackout lining. Then we added as much insulation as they could get in the ceiling and walls. . It made a different environment, and is bright and sunny in the daytime, and the right amount of darkness when we sleep. Before the new drapes, we had shutters on the windows. I liked the look, but at night my neighbor's flood lights penetrated the little slits in shutters. She has the habit of turning them off and on, while her dogs are outside. Our bed was positioned so the powerful light could penetrate the slits, it was bright enough I would awake several times at night. She is a good friend of mine, never married and her dogs are her babies. I understand and like her.

With my husband being an Air Traffic Controller for 25 years and having to work mornings, evenings, and midnight shifts during each and every week for most of his career, we quickly learned of the benefit of blackout curtains, white noise machines, and making sure our pets were not allowed to interfere with sleep (except for our spoiled rotten 4 lb 10 year old cat that rules our life because she shouldn't have lived past birth...like I said, she is spoiled rotten and it is our fault)

I wanted to add to my thoughts about your sign in ID. I knew your name was Marilyn, when I though of you, I pronounced your name Mare. Just as though I began to say Marilyn. It is a lovely name for a awesome person.

Aw good, because I like it pronounce "mare" since I LOVE horses ...I'm not so hung up on being associated with "mar" (as in to destroy or spoil)
mar

Jan

robertmarilyn · Post by **robertmarilyn** » Wed May 13, 2009 5:16 pm

ozij wrote:It looks like a pretty impressive correlation of leaks and events - on both nights.
With EPR 1 you spend half the time in apnea than you do on EPR 3. Two nights' data may be misleading - but its worth tracking those two facts.
O.

Last night I had an AI of 0.6, HI of 4.4 (or 2.2 for being Resmed) to equal an AHI of 5 (or 2.8 for being Resmed).

Very good stats for me

The not good things about last night is that once I was sleeping very deeply, I would have continued to sleep like that much longer except I awoke in great discomfort. My chest hurt...no bile in my throat but I guess that is still acid reflux/heartburn? But even more uncomfortable was severe aerophagia. I was in my really deep sleep stage and if there had been any way to ignore how bad I felt, I would have done so because my body wanted to keep sleeping...my mind wanted to keep sleeping...it takes a lot to drag me out of bed and awake during this stage of sleep. So I tried to just go back to sleep but I hurt to much too do so. Doing so was not an option at all.

Tonight, I am going to keep my pressure setting on 12.2 but I'm going to set the EPR relief to 3. I think my big problem is during the exhale. I could probably handle a higher inhale pressure of 12.2 if only I were allowed to have an exhale pressure much greater than just 3 below 12.2. Of course my machine doesn't allow for a bigger range between the inhale pressure and the exhale pressure. I was containing almost any leaks at all from leaving my mouth and I think that allowed my LES to experience more of the pressure it can't handle.

Hopefully the EPR of 3 will allow me to not feel such discomfort (and discomfort is understating how I felt), while still keeping my overall AHI's from reaching any new all time highs. I don't like having higher apneas or hypopneas but thankfully my gastro doctor's appointment is in 6 days and maybe he can help me with my problems (I know it might not be that easy of a fix but still..).

mar

robertmarilyn · Post by **robertmarilyn** » Fri May 15, 2009 12:40 pm

I'm in a heap of pain with heartburn during the night. With my acid reflux med and my head of my bed raised, I'm not having bile come into my throat but I am waking after a couple of hours sleep on my machine with intense pain in my chest and some stomach discomfort. So I think the most pain is heartburn, with some aerophagia thrown in to top things off nicely (or not so nicely). My gastro doc appt in on Tuesday.

Last night my machine was on CPAP pressure 12.2 and EPR 3. Tonight I'm going to jump down to CPAP pressure 11 and EPR 3. I know the lower my pressure/EPR is, the more my data in the morning shows a near constant line of hypopneas and apneas. I don't see how I can balance my weak LES with the likely need for a median pressure in the 13/14 range.

But we already knew that so I need to be patient until I can try a different type of machine. I can't buy a BiPap/VPap on my own without a prescription but would be willing to do so without the help of insurance, if knew which one would help me.

Thanks for listening,
mar

robertmarilyn · Post by **robertmarilyn** » Sat May 16, 2009 4:06 pm

Despite the fact that I need a higher pressure to come close to decent AHI results, last night I changed my settings to CPAP pressure of 11 with EPR 3. This resulted in a median pressure of 8.6. My leakage was 0.

Last night's data was:
Hours slept: 7:30
AHI 18.9
HI 15.6
AI 3.3

I lowered the pressure settings and raised the EPR because I have been having very severe heartburn/GERD symptoms. I have a gastro doctor's appt on Tuesday which will allow me to discuss all this with my doctor. The gastro doctor is aware of my sleep apnea and the need for pressure during my therapy with a machine. In fact, this doctor is the one who referred me to the very good sleep doctor that I have now.

Despite the undesirability of worse sleep results because of lowering my pressure to help my heartburn/GERD symptoms, I am also very aware of the damage that can be caused by such severe heartburn. And at least I actually slept all night, last night, which I could not do with the pain of the heartburn (and the heartburn pain didn't go away with getting up out of bed...it was lasting into the day). I would not want to think I have to go a long time with inferior pressure treatment for my sleep apnea though. My next titration test is June 2 but I plan to call my sleep doctor on Monday to discuss the problems I am having right now.

The heartburn/GERD pain was threatening my sanity somewhat but now that I was able to have a pain free (but high AHI) night's sleep, I am better able to wait for my doctor's appt, without being a whine baby
mar

-SWS · Post by **-SWS** » Sat May 16, 2009 4:55 pm

Mar, an EPR setting of 3 is pretty much a BiLevel setting. Last night you essentially ran a BiLevel setting of 11/8 cm. The only difference is that your machine is designed to temporarily suspended BiLevel operation whenever it detects hints of apneas.

Anyway, BiLevel seems to create less aerophagia than CPAP for most people. But for me it's the exact opposite: BiLevel creates more aerophagia than CPAP. So one progressive experiment might be to see how straight CPAP works at 9, 10, then 11 cm---with EPR turned off.

robertmarilyn · Post by **robertmarilyn** » Sat May 16, 2009 5:02 pm

-SWS wrote:Mar, an EPR setting of 3 is pretty much a BiLevel setting. Last night you essentially ran a BiLevel setting of 11/8 cm. The only difference is that your machine is designed to temporarily suspended BiLevel operation whenever it detects hints of apneas.

Anyway, BiLevel seems to create less aerophagia than CPAP for most people. But for me it's the exact opposite: BiLevel creates more aerophagia than CPAP. So one progressive experiment might be to see how straight CPAP works at 9, 10, then 11 cm---with EPR turned off.

Ok, I will start with 9 tonight. That will keep my median pressure at 9 rather than the 8.6 of last night. And I am sure I can handle no epr at a pressure of 9. I feel very comfortable with this idea

I'm gun shy of trying 11 with with no epr, at least until I have had a few more pain free nights...adding pain and fatigue together was about to do me in.

Thanks -SWS,
mar

SaltLakeJan · Post by **SaltLakeJan** » Fri May 22, 2009 4:44 pm

Hello Mar,

I have been waiting to know if your gastro doctor could help you. And I wondered if you could breathe on 9 pressure, how did it react asa your acid reflux was concerned. You have really gone the rounds with that - it shocks me when I have a sudden forceful amount jeting into my mouth - while I am asleep. I jump out of bed before I am even awake. I have always been afraid of choking when that "battery fluid" projects its self. I have esophageal spasms - they are painful and sometimes I feel as though I can't get any air through the spasms.

This is certainly the forum to discuss our health problems - seems like most of us have more than just sleep apnea. Your sleep study is coming up in just a few days. I wish you well with it, and I will include a prayer for you on June 2, 2009.I will always remember your kindness to me when I was so anxious about my appointment with the new sleep doctor. You really helped me through that worry. That is like so many cares and concerns, it just vanished before my eyes.

I followed O's, R.G.'s SWS, on and on, good advice regarding my machine. My DME was very good, they didn't have to let me trade units. I wanted to buy my Res Med, but asa they saw it, they raised the projected price from $899, to $1299. Jeff (jnk) also gave good advice. He said let the doctor be in control for a while.

My New machine is F&P 608, my RT said they never give out top=of-the line to their customers, but that is what my doctor ordered. It has wonderful humidification - if you like humidification, and from the advice I received, I am learning to like it. But I can't wait until I can buy my ResMed 8 Elite ll - or the machine designated by my sleep study. The F&P reminds me of an empty box. It has no morning messages for me - I don't know what my leaks or A1 are. The only problem with getting the Res Med is getting a prescription. I imagine something will work out regarding a prescription.

if a few words look strange in my posts - form instead of for - words like that. I jammed the fingers on my right hand in a private plane out of control landing. We all got out fine, but I was jolted forward and jammed my fingers. They have been stiff as a board since then. Sometimes I run spellcheck sometimes I don't bother, but since my right fingers no longer get the exact message from my brain, I may hit any combination of words.

Muffy picked up something unusual on one of my sleep study Centers. They were not using the up-to-date accredition standards in December of 2008. When I called my Ins to verify they would pay 90% of the charges - they specified the place had to be accredited. There may be many forms of "so called accredition" but they were not listed with Academy of Sleep Medicine. My new sleep Center is accreditated, and my sleep doctor is the Director of Sleep Studies. That is a relief for me.

You were a wonderful support to me before I met the new sleep doctor - I hope you will be aware that I will be supporting you in thoughts and prayers while you are at your sleep center.

Jan

so very tired and it isn't getting better

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0501009 CPAP 12.2 EPR 2

051109 CPAP 12.2 EPR 1

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