Can the CPAP community help me?

[fmj13]

Unfortunately, when doctors don't have any answers, they pass off the problem as psychological because that is easier instead of trying to help patients with difficult cases solve their problems.

Correct. I have had a sleep doctor do that to me.

[torontoCPAPguy]

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.

CPAP is simply "continuous positive airway pressure" intended to keep the airway open so that the cause of failure to inhale is NOT airway blockage due to whatever. APAP on the other hand is Automatic Positive Airway Pressure and is intended to react to the level of blockage with a RANGE of pressures to be supplied: a base pressure to keep the airway open as necessary PLUS the ability to sense airway blockage and increase pressure as required within the set range to open the airway.

Regretably, it is not all as simple as this. The sleep study report at the beginning of this thread is somewhat befuddling as the information being provided is not complete IMHO and we need to see things like lengths of time, pressures over time, pulse rate over time, SpO2 OVER TIME and so on. To ignore the timeline, IMHO, makes ANY sleep study virtually worthless. One can have an event, but if that event is 1/2 of a second over time, how significant is it? NOT! The report is less than stellar. One of the most important pieces of data is SpO2 over time, related to events, etc. So, again, the timeline, IMHO is significant to interpreting the empirical data.

2+2 events is not significant, unless they are related to the timeline and shown to be of significant length, etc. The referral to psychology is valid and very pertinent to the overall interpretation of the data and the final diagnosis. If it is free I would not walk, but I would run to take advantage of this referral unless there are other reasons NOT to see a psychologist. As I said earlier, I have permits to carry concealed weapons and DOD security clearance so my first reaction was to avoid psychology like the plague, but in the end it was a valuable input to bringing AHI down to zero and getting a solid night of sleep.

My sleep issues NOW are related to pain from injuries and arthritis and medications being taken for pain and side effects of heart medication. I am back online here just to pay back what I left with over five years and to refresh and update as my wife has just been prescribed CPAP for OSA.... I am royally ticked off that she was not Rx'd APAP but that's another story.

We are in the process of mask fitting and titrating pressures. Just got a good mask fit but need to downsize the mask as we are experiencing too many leaks but the first reaction to a half decent fit full face mask and what appears to be a decent pressure? "Wow... that was amazing. I haven't rested that well in a long, long time." MY reaction about five years ago was identical. Once things were spot on I put the mask on, turned on the APAP and O2, laid down just to test the fit.... and woke up almost 6 hours later.

[Semily]

I feel compelled to chime in, despite my limited knowledge and being a newbie to CPAP myself. But I have to agree with the others that are encouraging you to see a psychologist. That's not to say that you shouldn't keep pursuing proper diagnosis/treatment for the sleep issues - you should. But the very fact that you said you are feeling hopeless suggests that you could use the emotional support that a counselor could provide. They can provide encouragement and perspective while you continue working through the sleep issues.

[sleepinow]

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.

49er

To tell the truth, if I do not take melotonin I wake up and it is harder for me to fall asleep which would cause more damage to me than taking melotonin. And I take 30-50 regularly, but I am trying to lower my dosage to see what the right amount is. The whole reason why I started taking melotonin was because my arousals were starting to be unbearable. I have noticed a significant difference in waking up less after taking melotonin

[sleepinow]

Agree 100% with library lady, you have nothing to lose and everything to gain by seeing a psychiatrist/psychologist at this point. And yes, 30mg of melatonin is a RIDICULOUS amount to be taking for insomnia, and will skew any evaluation of your symptoms.

As a clinical depression sufferer myself, I can tell you that it manifests in many different ways from individual to individual, and even varies for me depending upon the severity of my depression. Many times I am tired, sluggish and fatigued all the time, and other times I have a horrible time getting to sleep at all.

Ouch, that just shows how bad humans can develop. It sucks, but it is great to always hope for better medicine. Yes I am debating whether the Stephan Park ENT doctor in NYC or a psychologist. First however, I need to see if my sleep disturbance arousals are related to having a sensitive apnea. The reason because minimal exercise makes it much worse, and the only reason why I think it happens is that my muscles may be more relaxed, and I breathe harder which can bring about an apnea. So I need a lot of figuring out to do..

[sleepinow]

Sleepinow, I can feel your frustration in your words. You sound very sad, and desperate. {{{HUG}}}
If you, like others, believe that all psychologists are quacks, please dismiss that assumption,
--for your own sake. A psychologist should be able to assess the causes of your symptoms,
or even refer you to a neurologist if that is what you need. Understand that this slow, roundabout
approach is common with HMO's--especially UHC. They want to discourage you from continuing to seek solutions.
DO . . . NOT . . . GIVE . . . UP!
And when you say, "United Health Care", say "Care" with a loud snort, because they DON'T.

{{{{{{{{HUG}}}}}}}}
Yes, I was sad and felt bad when I was shown the results. I was anticipating a Obstructive SLeep Apnea diagnosis not something that I don't even know


haha that last part made me laugh

[sleepinow]

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.

Lol this feels like it happens to me all the time, especially the dreams. I would be dreaming and wake up and think, "all right I rested well" to look at the time and realize I had only slept for four hours

I was actually speaking with one of the sleep docs and he was surprised at the information that I knew and so we talked for a bit

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.

Is this a necessity for me? My o2 hasn't dropped too much in my studies (At least I don't think so, I do not know what is considered low) But if getting this helps me then yeah I will get it

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.

Well I guess your right with educating myself this and school. I actually have many sleep books and a fundamentals sleep technology text book that I haven't read yet

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? Nope

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.

Ouch, it is too bad was us humans are so fragile. One accident can completely ruin/end your life :/

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.

Wow that is great inspirational information you gave me. I will further educate myself because yeah, the questions I asked my doctor were not even answered well. Some of her advice was stuff I already knew and had done

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.

Thank goodness! losing something that is of great value to you can really impact your direction in life (I am not sure what DOD security clearance is, but it does not sound too good to lose hehe) I will try to not give up (And I honestly do not think I will :} )

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.[/quote]

[sleepinow]

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.

Holy crap that could have seriously turned out bad. I am glad it didn't. Your problems seem similar to mine lol (I doubt though that they are the same)

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".

lol that was funny. I wish I had a dog

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.

YUP I forgot to also mention that I am also sensitive to temperature especially when it is hot, and yes I agree it is worth every penny!


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

Lol if only the AHA moment was right now, but yes, it will take determination, and discipline to read and read and learn. Thanks

[sleepinow]

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;
(lol exactly how I felt the second I left my doctors office and a little bit after posting on here, but these posts I am reading are gold)


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.

wow awesome. Thanks for your post

[sleepinow]

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.

I honestly have thought that, but my summary of the sleep study said "No significant upper airway resistance syndrome, but they could have just missed it, which is why I need the raw data. I will bookmark/print the above page, thanks

[sleepinow]

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'.

Oh should I post a night recording of that data?

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. yea, I do not know what you meant here with pulse rate being zero but I really do need the raw data it seems and also a graphical representation of it that fits to a page

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. Yeah my doctor told me I should exercise, but I am skinny and exercise will make me fatter because I get much worse sleep and then my appetite and probably my metobolism gets screwed up

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.

Yes I will get data from both sleep labs soon, please do not leave this forum in the near future!

[sleepinow]

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.

Just trying to find solutions to my sleep problem :s

[RicaLynn]

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.

Just trying to find solutions to my sleep problem :s

...by reading every sleep text know to man and overanalizing every bit and byte of data you've received to date, while all but ignoring the recommendations of every professional and several of the more experienced hoseheads you've come into contact with. Long story short, you're NOT seeing the forest for the trees and you're going to need search and rescue to get you out of there. I wish you well.

[sleepinow]

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.

Just trying to find solutions to my sleep problem :s

...by reading every sleep text know to man and overanalizing every bit and byte of data you've received to date, while all but ignoring the recommendations of every professional and several of the more experienced hoseheads you've come into contact with. Long story short, you're NOT seeing the forest for the trees and you're going to need search and rescue to get you out of there. I wish you well.

I am seeing the forest, but I first have to figure out what steps I should take in order. So first I will get my raw data, then either see a psychologist or ENT. I think I sort of mentioned that in one of my previous posts

[sleepinow]

[quote="Sludge"]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.

I don't know if you misread the study or if you are talking about something else, but the time I went to bed for my most recent study is 8:18pm and woke up at 6:18 pm