Can the CPAP community help me?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
sleepinow
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Re: Can the CPAP community help me?

Post by sleepinow » Sat Sep 13, 2014 11:20 am

Well off to getting ready to go to work.
Thanks for all your replies everyone, if I didn't reply to you, it means I didn't read you comment yet

Here is a question that may or may not be true and if someone can answer it then great.

Is it possible since I have a very high degree of being sensitive to things, light (I made my room completely pitch black and took a lot of work to do it because some light penetration woke me up) , noise, (the slightest noise wakes me up, it can be anything, which is why I wear earplugs, use noise reducing pad above on the second floor so I do not hear it, use a white noise machine) that maybe the reason I have all those arousals are because at the very moment that I do stop breathing, my brain alarms me to wake up, hence the many sleep stage transitions I had

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49er
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Re: Can the CPAP community help me?

Post by 49er » Sat Sep 13, 2014 11:29 am

sleepinnow, I have to take back what I said previously and agree with the other folks who feel you need to see a psychologist, particularly if you can't even see that 80mg of melatonin is way too much. That could be a big time factor regarding your issues.

Anyway, my apologies to the others for jumping the gun.

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torontoCPAPguy
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Re: Can the CPAP community help me?

Post by torontoCPAPguy » Sat Sep 13, 2014 11:37 am

My personal experience is that anyone who is active on this forum for some time and has done their homework probably knows as much or more than most sleep doctors; my wife's recent experience supports this theory. In my own case I wound up SELF DIAGNOSING, assembling data from my APAP and taking it to the sleep doctor and TELLING HIM what I needed. He said "You'd make on helluva sleep doc". I also spent time with a respirologist, pulmonologis, psychologist, and a plethora of other "specialists".

If it is not costing you I would see the psychologist. What I discovered from THAT visit was that I was awakening during REM sleep. Enter one pulse oximeter (Contec CMS-50EW - records and recharges). Guess what? Every time I dropped into or was about to drop into REM sleep my breathing grew so shallow that my SpO2 plummeted. PLUMMETED. Add to this OSA and it did not matter what machine I used or what the settings were.... I was going to have my body tell me to awaken and breath. BINGO. After going around in circles telling everyone and showing empirical data collected I was finally prescribed infused O2 at 3 - 5 L/M (raises the oxygen content of the air being pushed into you from 29 to about 38% as I recall). The very first night was 1,000% better than with the APAP alone.

So, my suggestion is to read, read, read and educate yourself from the experience of the others on this board and their experiences. Then collect empirical data from a machine like the S9 AUTO and read it using your computer with appropriate software. PRESENT THIS to your doctors. I think that you just might come up with the answer to your issues on your own (and more accurately than what a one night "sleep study" will provide with all due respect). See the psychologist. You may have some underlying issues that you do not realize are sitting in your subconscious and brewing.... and come out as you enter REM sleep in the form of a short dream that awakens you before you can drop fully into REM sleep, where most of your 'rest' happens.

IMHO, you need to be playing with the data your machine is giving you AND with the data that a half decent pulse oximeter gives you.

Can the CPAP community help you? Nobody is going to play doctor for you and you should NEVER take anything on here as anything more than fellow forum members sharing their experiences with you. It is YOU that needs to get educated, share info, consume info, digest it all and come up with a masterpiece conclusion.

BTW, there's lots more information that is or might be relevant to coming up with a conclusion. Do you have any injuries or conditions that cause you aches or pains during the night by laying still? I discovered that I did. After a couple of hours of laying still I get aches and pains galore. This is like a dog chasing its tail.... you are darned if you do and darned if you don't take pain medications. ANY medications you might take for night-time can have an effect on your sleep. I recently injured my back and ribs seriously and I can tell you that it is a fine line between trying to kill the pain and having those medications mess with my sleep.

In any event, last time I will say it. Get yourself educated (I mean no insult in this) as best you can... take in as much off of this forum and the internet as you can consume. Get educated as to your numbers with data collection and know what they mean and what affects them. Digest it all and come up with a hypothesis. Eventually you are going to hit the nail on the head. My AHI generally runs about 0.0 now and I give NOT EVEN ONE of the doc's credit for this. The final change I made, based on what I learned on here, was to go to a full face mask and it took me from 10 - 15 down to 0 in a couple of nights as I got used to it and adjusted the fit. Baby steps become giant steps and eventually you will have what you are looking for... the answer to getting a good night of sleep.

Above all, DO NOT GIVE UP. Take whatever you can with great zest. Referred to a psychologist? Take it!! Especially if it is free or covered by insurance and don't worry about it. I went for a couple of sessions, got what I felt was all I was going to get from it and stopped. And I have to tell you that the decision to see the psychologist for me was a major one as I hold several pieces of paper that could easily have been affected by simply seeing a psychologist (gun permit, carry permit, DOD security clearance, etc.). Never happened.

Don't be afraid to share your personal history with the folks on the forum either... it will assist folks in giving you loads of "free advice" (which is, of itself, worth what you are paying for it... but used wisely can point you at YOUR solution).

Good luck. I have no doubt that with perserverence you will find what you are looking for. Just don't give up. Trust me.

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torontoCPAPguy
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Re: Can the CPAP community help me?

Post by torontoCPAPguy » Sat Sep 13, 2014 12:00 pm

sleepinow wrote: Is it possible since I have a very high degree of being sensitive to things, light (I made my room completely pitch black and took a lot of work to do it because some light penetration woke me up) , noise, (the slightest noise wakes me up, it can be anything, which is why I wear earplugs, use noise reducing pad above on the second floor so I do not hear it, use a white noise machine) that maybe the reason I have all those arousals are because at the very moment that I do stop breathing, my brain alarms me to wake up, hence the many sleep stage transitions I had
I can see you are on the path to enlightenment. I, too, am sensitive to all of the aforementioned. I sleep with the bedroom door closed these days to shut out any hint of light or noise. And noise from ANY source, even the slightest, raises my level of consciousness. No earplugs here, but we installed a top notch alarm system and have trained the dog to bark at the first sign of intruders outside at the perimeter of our home. So I sleep with the inner comfort knowing that we are "safe" in our home. Four years ago we had an attempted home invasion. The dog barked, I awoke (3 a.m.) and looked out the 2nd. floor bedroom window to see two guys with handguns and pry bars trying to break in at our FRONT DOOR. Obviously high as kites. Long story, but suffice it to say the bad guys were taken down at gunpoint OUTSIDE of our home by the police who arrived in force. I am still sensitive to noise but sleep with the comfort of knowing that we are relatively "safe" in our home. I know a number of folks who do not have the pleasure of rapid police reponse time, grade A central station alarm system, trained dog, etc. Funny, they are also sensitive to noise.

When we curl up on the couch to watch hi-def TV at night, our dog thinks the TV is a window. Our cable company has an aquarium channel, a sunset channel and a fireplace channel. Neat huh? The dog thinks it's a window and the sunset channel has people jogging by and birds flying, etc., The dog goes whacko and then sniffs around and behind the TV for the "bad guys".

We also discovered that lowering the temperature in the house a bit makes a big difference to the quality of our sleep and even though it costs us bigtime in the summer here, it is worth every penny of electricity to run the air conditioner.

We have an S9 AUTO APAP which is much more quiet than the S8 AUTO that we used to have and when we decided to add O2 to the airflow went with the most quiet oxygen concentrator we could afford. (That was 5 years ago.. Respironics Everflo Q)

Funny about noises... when I was a kid we had no air conditioning so adjusted the temperature by opening the windows wider, etc. No trouble sleeping back then. Guess we were young and innocent or something.... or maybe it was just all that fresh air, never mind the skinks that let loose on the block.

Keep at it. You WILL figure it out one chunk at a time until you reach your "AHA!" moment.

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chunkyfrog
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Re: Can the CPAP community help me?

Post by chunkyfrog » Sat Sep 13, 2014 12:11 pm

I agree with Torontocpapguy 100%
You may not realize it, but your words say much more than you think you are saying.
You need to talk to someone--a professional--ASAP.
You seem to feel helpless and very angry; that you are being pushed in the wrong direction;
but to go along is the only way to find your way back to being well.
If you want help, you need to follow the advice given here.
We are not doctors, but many here have learned enough to optimize our own therapy,
and to help others find their own optimal therapy.

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tmr
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Re: Can the CPAP community help me?

Post by tmr » Sat Sep 13, 2014 12:20 pm

Its possible you have UARS. Read about it in this forum, there are a lot of info.

A helpful thread.

viewtopic/t26622/UARS--A-Critical-Link- ... sults.html

Then with software you can tweak your machine for optimal therapy.

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Re: Can the CPAP community help me?

Post by torontoCPAPguy » Sat Sep 13, 2014 12:36 pm

Sorry to be posting yet again.... had a closer look at that sleep study and the thing that comes to mind is BBB "bullship baffles brains". Take from it what you find may be valid and of use to you and disregard the rest. I note that you are using an FX mask yet could find no data on 'loss of resistance' or 'mouth breathing/leaks'. At 2 + 2 events, your apnea is being well treated it seems. Yet, I can't help but come to an abrupt halt and scratch my head when I see your pulse rate being stated as 62 BPM on average and 107 BPM maximum without any graphical representation of same. Either your pulse rate was 0 for a while or 107 VERY briefly. Can't tell without a graph over time. And what of the comment about your weight? 152 pounds? And you are being told to get your weight under control? Unless you are under 3 feet tall or over 7 feet tall, 152 pounds seems pretty good to me. Nonetheless.... that pulse rate waves a flag. Pity we can't see it plotted over time. And we don't know WHEN it occurred. If it was during REM sleep you need to try and remember what you were dreaming about. If it was a nasty, nasty dream that might explain the pulse rate, etc., but there is just not sufficient information and IMHO the provision of the pulse rates without representation over a timeline is pure and simply, a BBB contribution to the report. Or politely, of minimal use except to wave a flag. That is why I say, YOU need to gather data that can be of better and more efficient use. The comment about weight really throws me off.

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Re: Can the CPAP community help me?

Post by palerider » Sat Sep 13, 2014 12:45 pm

sleepinow wrote:
mgaggie wrote:I am going to be a bit brutal here, but I think you need it.

You over think things. You are obsessing over this perceived problem you have. Have you ever thought that your problems could be psychological? Stress and anxiety can and does manifest itself in strange ways. Maybe there isn't an answer to why you wake up multiple times during the night, although you say you can't sleep, so what is it? Insomnia or multiple wake ups?
Thanks again for your response

What makes you think that I over think things?
because we've read the things you post.

maggie hit it dead on.

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kaiasgram
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Re: Can the CPAP community help me?

Post by kaiasgram » Sat Sep 13, 2014 2:23 pm

Sludge wrote:
kaiasgram wrote:I also think that your question about whether subclinical respiratory events (not meeting criteria for scoring an apnea, hypopnea, etc.) could be part of the explanation for all the spontaneous arousals is an interesting question.
If a subtle respiratory event generates an arousal (and this is easy enough to see) it would have been scored as a RERA instead of a spontaneous.
Curious -- with RERAs, are there scoring criteria for the respiratory event (that generates the arousal), or does any change in respiratory effort that generates an arousal get scored as a RERA?
Sludge wrote:If it's so subtle that it can't be seen, then "IMHO" it would be easier to change arousal threshold.
As in reduce the ANS overdrive?

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Re: Can the CPAP community help me?

Post by Sludge » Sat Sep 13, 2014 3:48 pm

kaiasgram wrote:Curious -- with RERAs, are there scoring criteria for the respiratory event (that generates the arousal), or does any change in respiratory effort that generates an arousal get scored as a RERA?
Specifically:
If electing to score respiratory effort-related arousals, score a respiratory event as a respiratory effort-related arousal (RERA) if there is a sequence of breaths lasting ≥10 seconds characterized by increasing respiratory effort or by flattening of the inspiratory portion of the nasal pressure (diagnostic study) or PAP device flow (titration study) waveform leading to arousal from sleep when the sequence of breaths does not meet criteria for an apnea or hypopnea.
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Sludge
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Re: Can the CPAP community help me?

Post by Sludge » Sat Sep 13, 2014 3:56 pm

So I'm thinking the whole sleep study is bogus (re: architecture, anyway). Mariusz doesn't go to bed till 6 AM (see this AM), so I'm thinking he's a wicked DSPS. That's why he shoved in a handful of melatonin to try to sleep 8 hours before his normal bedtime.

So then here comes the MSLT, so of course it's AFU cause he's put down for naps during what would be his normal sleep time. And has a reduced sleep latency. What a BF surprise!

But when you think about it, that's not a bad latency at all for somebody who should be asleep. So this should bring us back to the issue of hyperarousability.
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Re: Can the CPAP community help me?

Post by Sludge » Sat Sep 13, 2014 3:59 pm

sleepinow wrote:Basically any form of exercise no matter how small it may be (walking up three flights of stairs, changing a tire, running just a few yards) worsens my ability to stay asleep after waking up from sleep multiple times
OK, that's normal activity.

We need a sleep log. Did they ask you to do one prior to the study?
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Re: Can the CPAP community help me?

Post by library lady » Sat Sep 13, 2014 4:28 pm

sleepinow wrote:
Julie wrote:For one, I would think that the fact you thought it a good idea to take 80 mg(!!) of melatonin for your sleep study is reason enough to see someone - that's a huge amt and of course you gave yourself no hope of getting valid results by doing that. I understand you were concerned about not sleeping properly for the test but at least the machines would have gotten true results, not ones all messed up by the drug!
From research done here and over the internet, melotonin doesn't really affect sleep studies and sleep pills were acceptable at the study. Is 80mg alot? Yes, but I doubt it severely impacted my results. My objective was to get as much sleep time as possible to get actual sleep data recording. Had I not taken the melotonin I might have had my usual waking up in the middle of the night and not falling back asleep.

Except for the Melatonin Long Term Effects, melatonin safety is WELL documented and it's been found that a melatonin overdose is extremely hard to do- even when giving Melatonin for Children . In fact, it's so hard to give someone melatonin toxicity that scientists trying to find its toxicity level in mice couldn't do it. When scientists do preliminary studies on substances to try to find out levels of toxicity, they have developed a number called the LD 50. The LD 50 is the dose that will consistently kill half of the mice that they give the substance to. Well, Melatonin HAS NO LD 50 because no matter what dosage was given to mice, they just simply didn't die!


"When government scientists set out to find
melatonin’s “LD 50”- the dose that’s lethal to
50 percent of the animals receiving it - they
couldn’t make a rich enough concentrate to kill
a mouse. And when researchers fed human
volunteers 6 grams (6,000 mg) of the stuff every
night for a month stomach discomfort and some
residual sleepiness were the only reported
side effects."


And people who could use a psychological assessment are not going to be good judges of whether or not they need one... that's the whole point! If you were in such good psych. shape, you probably would not have been referred, but you were, and if I were you I'd take advantage of it... nothing to lose

I believe I was referred because the doctor had no idea what else to do with me. She kept talking to me about calming the mind and thought that I was stressed out from school because she threw me into the stereotype of school students being stressed although I am not stressed and rather am so far achieving getting a 4.0 gpa as a full time student, as a part time worker, with sleep apnea and potentially some other condition. That is the about/near the point I started to cry. Usually people who are stressed get worse grades because they are not in the good state of mind to actually perform tests without having clear thoughts on how to answer the test because they are stressed. I drive/cruise in the middle lane because I get to work on time because I am not stressed getting there. The only noticable times I do get stressed is around my parents and aunt because for one my aunt is delusional, very old, racist, lacks good judgement.. etc. My dad is I would say a form of mentally retarded. I do not know why I have asked my mom and she doesn't give me a clear answer but I believe it has something to do when I was younger because something bad happened at his factory and he was a welder and something broke and he started going crazy one day about the toxins that affected him at work. He actually sued the company too. And my mom is just not smart at all with some of her decisions. I am not sure if she even graduated high school because she doesnt talk about her past much which sort of stinks.

"I don't think you're the best judge of whether you're 'stressed' or not - symptoms of stress can be quite different from what you imagine them to feel like... not just 'high anxiety' or something, but often what may seem like random ones at times when you think you're relaxed, etc., or physical problems that don't directly follow what you perceive as stressful... the body and brain are more complicated than that and at your age I doubt if you can be your own doctor."

I can not argue with because your right it can be true that I do not notice the stress.


Melatonin - it's wicked. I have a bottle of 3mg melatonin, and if I take the whole 3mg, I will have to sleep for 12 hours before I can wake up enough to take the mask off or get out of bed. I rarely use it, but when I do, I use my pill splitter to cut it into fourths; that small amount is enough to help me drift off to dreamland. You can do the math yourself: 3 divided by 4 = ?. less than 1mg.

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Re: Can the CPAP community help me?

Post by library lady » Sat Sep 13, 2014 4:42 pm

sleepinow wrote:Well off to getting ready to go to work.
Thanks for all your replies everyone, if I didn't reply to you, it means I didn't read you comment yet

Here is a question that may or may not be true and if someone can answer it then great.

Is it possible since I have a very high degree of being sensitive to things, light (I made my room completely pitch black and took a lot of work to do it because some light penetration woke me up) , noise, (the slightest noise wakes me up, it can be anything, which is why I wear earplugs, use noise reducing pad above on the second floor so I do not hear it, use a white noise machine) that maybe the reason I have all those arousals are because at the very moment that I do stop breathing, my brain alarms me to wake up, hence the many sleep stage transitions I had
Look at what you said, sleepinow, where I've highlighted in this post of yours. that is precisely what cpap is supposed to do. When you stop breathing, your brain tells you to start breathing again, and you have to wake up at least partially in order to do that. The purpose of cpap is to sense when your breathing lowers/stops and create more air pressure to open up your airway so that you don't wake up or have arousals.

I'm sorry you're having so much difficulty, but you keep resisting what we are all telling you, as if we don't understand. Believe me, we all understand because we've all been there when we first started cpap. Some people take to this like a duck, but for most of us it was a struggle to adapt. That is what you're having trouble with, and I urge you to work with a psychologist who can help you work through your issues with it, and learn new ways to adapt to the situation and how you react to it.

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Re: Can the CPAP community help me?

Post by RicaLynn » Sat Sep 13, 2014 4:44 pm

sleepinow, I'd like to see a cited source for the information you provided on a supposed LD50 for melatonin. As it's a naturally occurring hormone you are correct that it's unlikely to be lethal. Then again neither is estrogen, TSH or testosterone, but too much of any of them and your body is in for a world of hurt.

Please read the following link on melatonin overdose, and pay special attention to the information on possible side effects.

http://www.nosleeplessnights.com/can-yo ... melatonin/

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