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Cpap & Autopap NOT working - getting desperate
#11
(11-01-2013, 02:52 PM)robysue Wrote: Thecleanser,

I'm going to break my response up into two posts because I don't want this part to get lost. You write towards the end of your last post:

Thecleanser]Yesterday was sh*t day for me - started burning out by 11AM, advil didn't help -stayed that way for the rest of the day -
Today was more headaches, started before 9AM - after a 200 mg advil around 9:30 AM I was sharp till noon when the advil started to wear off - another 200 mg advil around 1:30PM and I was again sharp till 5:30 pm - the 3rd advil didnt help I was sincerly burning out -
Graphs on the reports are nearly identical.

You are talking about daylong headaches and headaches that last over multiple days. And you're saying that the CPAP data looks about the same on a day with headaches as it does on a day without headaches. You're also talking about treating headache pain with substantial amounts of OTC pain relievers. And you are talking about headache pain immediately returning as soon as the pain reliever wears off and not always responding to taking another dose of the pain reliever.

I bring this up because your description of your headache pain makes it sound like you may have a serious problem with chronic headache pain and that it could be the case that your headaches are causing a substantial amount of your difficulties (maybe even MOST of your difficulties) rather than what's going on with your CPAP and OSA.

Let me be clear: It sounds to me like you are assuming your headaches are somehow related to your PAP therapy not yet being optimized. But chronic headaches can be caused by any number of things (including plain old bad sleep caused by things other than OSA). And chronic headaches can really make your life miserable. But fixing chronic headaches requires figuring out the cause of the headaches and treating that. Sure untreated OSA can cause chronic headaches. But so can migraines. And stress. And muscle knots in the back and neck. And TMJ problems. And congested, inflamed sinuses. And if your AHI is consistently below 5 on CPAP, then chances are, your OSA is well treated and your headaches are NOT being caused by ineffective PAP therapy. So my guess is that your chronic headaches are caused by something other than OSA, and you and your docs need to identify what's causing them and figure out how to treat them.

The description of your headaches does not sound like classic OSA headaches, which typically are present when you wake up and get better (without any pain medication) in an hour or two after waking up. Your description of the headaches sound like one of my old rebound" headaches---a headache literally triggered by taking too much pain medication to treat headache pain. Your phrases "started burning out by 11AM, [i Wrote:advil didn't help[/i]" and "the 3rd advil didnt help I was sincerly burning out" are the giveaway: That used to happen to me when I was dealing with rebound headaches. Unfortunately, the only fix for rebound headaches is to not take too much pain medication for the initial (non-rebound) headache.

In an average month, how many days do you have a noticeable headache? How often do you take an Advil for the headache? How often does the Advil fail to work?

And before you take the first Advil, can you describe the headache pain? Is it stabbing or throbbing? On one side of the head or on both sides? Centered on your forehead? around the eyes? behind the eyes? at the temples? in your jaw? in your sinuses? in your neck? or sort of all over? Other than taking Advil, is there anything that tends to relieve the headache pain?

Okay let me clear this up - and thanks for your response ,
These are not hard core head aches i'm talking about like migraines or pounding head aches - they are ever so slight almost confused with tiredness -they are more of a loss of concentration ( also caused by tiredness) When I wake up i'm clear headed and then soon afterwards my head starts getting foggy. Some times more than others- some times an advil clears me right up as described in my previous post - others it does nothing and I feel like sh*t for the entire day - its some time hard to tell the difference between this foggy head feeling or headache feeling) or just plain being tired. Some times Ill take 3 advils through out the day to clear me up - others 1 in the morning and I'm clear headed and awake for the rest of the day - and other they just wont work cause just plain tired.
then there's yesterday where I woke up got a ever so slight foggy feeling but took no advil and the feeling was gone on its own in an hour and I had a fairly good day till about 4 or 5 pm when I started to burn out hardcore.
Then there's days like today where I woke up and got the foggy feeling pretty strong took an advil by 9 am which did nothing and was soooo damn tired for the whole friggin day.
Now Between today yesterday and the day described before there was no discernible difference in what transpired through out my day - alcohol, staying up late etc... - woke up at the same time had my meals at the same time and went to bed at the same time.
The graph on sleepy head shows slightly more leaks than previous night but no more leaks than on a good days previous report - pressures hangin out around the same - pie graph showing more than 25% CA, yet I can describe it as one of my worse days.

Now for the first year and a half I did not think in the slightest possible way that Cpap might be the cause of this - I was half convinced I had a brain tumor and was going to die and the other half thought it must be TMJ pain or jaw related headaches. I did go and see a neurologist and got an MRI on my head which turned out clean.
I also did go and see an Oral/maxillofacial surgeon who checked me out thoroughly and took a 3D Xrays of my jaw and said that it is not my problem.
I'm not a 100% certain but I believe this Cpap machine and these forced pressures of air are whats causing this - as you can I see I did not come to this conclusion easily. I must take into account that these headaches started some time or shortly after I started Cpap.
My AHI is consistently under 5 - leaks are very low yet I'm having way more bad days than good - and most of my good days I'm usually burnt right out by dinner. So its rare that I'm truly having a good day from morning till bed time.
Pressure is usually hanging out at 8 or 9 to 12 with spikes up to 15 or 16 - on one of my best days it hung out between 4-8 . That is kinda telling me that I need to go to one of these weight loss programs and drop 50 lbs to hopefully lessen the severity of this condition cause clearly this therapy is not working for me the way it should.
Or maybe one of these bilevel machines might help out.
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#12
P.S I have ordered an oximeter which should be here in a few days - one of the ones that jives with sleepy head -
CMS-50E OLED Fingertip Pulse Oximeter
I'll compare that data with that of the machine data and see if that can help me out a little.
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#13
Quote:Okay let me clear this up - and thanks for your response ,
These are not hard core head aches i'm talking about like migraines or pounding head aches - they are ever so slight almost confused with tiredness -they are more of a loss of concentration ( also caused by tiredness)
Chronic headaches are seldom "hard core" "pounding" headaches. But the thing is they are always there lurking in the background with low level pain that makes it more difficult to concentrate ....

Quote:When I wake up i'm clear headed and then soon afterwards my head starts getting foggy. Some times more than others- some times an advil clears me right up as described in my previous post - others it does nothing and I feel like sh*t for the entire day - its some time hard to tell the difference between this foggy head feeling or headache feeling) or just plain being tired.
This does NOT sound like the classic OSA headache. The classic OSA headache is present when you wake up and gets better after you get out of bed and start moving around.

The fact that you say that an advil sometimes does nothing to clear the headache up still points to the possibility that you are dealing with rebound headaches. Do you take advil for headache pain three or more days a week on average? If so, then you really need to talk to your PCP about how the headaches are now chronic and that you are taking advil three or more days a week and that it does not always work. When you over treat (mild-to-moderate) headache pain with OTC pain killers like advil, the result, alas, is rebound headaches. It is possible that your morning headache is starting because you have not yet taken the advil and your brain now expects an advil or it develops an headache. And unfortunately, with rebound headaches, the original OTC pain medication does not always prove to be effective in treating the rebound even when the rebound is being triggered by not taking the OTC pain med at the usual time


Quote:Some times Ill take 3 advils through out the day to clear me up - others 1 in the morning and I'm clear headed and awake for the rest of the day - and other they just wont work cause just plain tired.
then there's yesterday where I woke up got a ever so slight foggy feeling but took no advil and the feeling was gone on its own in an hour and I had a fairly good day till about 4 or 5 pm when I started to burn out hardcore.
You are overtreating the headache pain with the Advil and that's likely making your brain fog/mild headache/fatigue worse rather than better.

Quote:Then there's days like today where I woke up and got the foggy feeling pretty strong took an advil by 9 am which did nothing and was soooo damn tired for the whole friggin day.
Now Between today yesterday and the day described before there was no discernible difference in what transpired through out my day - alcohol, staying up late etc... - woke up at the same time had my meals at the same time and went to bed at the same time.
Have you told either the PCP or the sleep doc of the amount of advil you are taking and why you are taking it and how it no longer is effective in treating your pain/fogginess 100% of the time like it used to be?



Quote:The graph on sleepy head shows slightly more leaks than previous night but no more leaks than on a good days previous report - pressures hangin out around the same - pie graph showing more than 25% CA, yet I can describe it as one of my worse days.
The pie chart is less important than the actual AHI numbes. What was your AHI for the night? What was the CAI? What was the OAI? What was the HI?

Have you looked at the detailed data graphs? Is there any nasty clustering of events on the nights preceding the bad days? Any idea how long your typical events are lasting? How long are the longest of the events?


Quote:Now for the first year and a half I did not think in the slightest possible way that Cpap might be the cause of this - I was half convinced I had a brain tumor and was going to die and the other half thought it must be TMJ pain or jaw related headaches. I did go and see a neurologist and got an MRI on my head which turned out clean.
I also did go and see an Oral/maxillofacial surgeon who checked me out thoroughly and took a 3D Xrays of my jaw and said that it is not my problem.
A clean MRI and clean 3D Xrays of your jaw do not eliminate chronic headaches caused by a variety of reasons. It probably does eliminate TMJ issues---unless there is evidence that you are clenching or grinding your teeth at night. Grinding or clenching can happen even if when TMJ is structurally normal if the grinding is stress related.

As a chronic headache sufferer, I'd still place my bets on you having at least one non-CPAP/OSA related cause of your headaches. My guess is tension headaches that may be morphing into rebounds. Now it is possible that the source of the tension headaches is the difficult adjustment to the CPAP machine itself and the fact that instead of fixing your sleep and allowing you to feel consistently better, you've spent the last year or two on a roller coaster of feeling well for a brief period of time and then starting to feel crappy all over again.

And CPAPs can be difficult for some people to sleep with and they can seem to cause some of us to have a lot of unnecessary, nonrespiratory related arousals during the night, which can lead to fragmented sleep, which can lead to feeling lousy, and which can trigger chronic headaches with mild levels of pain.

Quote:I'm not a 100% certain but I believe this Cpap machine and these forced pressures of air are whats causing this - as you can I see I did not come to this conclusion easily. I must take into account that these headaches started some time or shortly after I started Cpap.
My AHI is consistently under 5 - leaks are very low yet I'm having way more bad days than good - and most of my good days I'm usually burnt right out by dinner. So its rare that I'm truly having a good day from morning till bed time.
Pressure is usually hanging out at 8 or 9 to 12 with spikes up to 15 or 16 - on one of my best days it hung out between 4-8 .
So a drastic idea for you to consider: Why not lower your upper pressure to 8 cm and leave it there for a month or two and watch the AHI data. If there's no drastic increase in AHI and there is an improvement in how you feel, then just run with the tight APAP range.


Quote:That is kinda telling me that I need to go to one of these weight loss programs and drop 50 lbs to hopefully lessen the severity of this condition cause clearly this therapy is not working for me the way it should.
Weight loss is always a good thing. But you need to be realistic here: For many people who are both overweight and who have OSA, it turns out that their OSA came first and the weight problem came second. And losing the weight does not fix the OSA problem. So it's prudent to have another sleep study done after you've lost the weight and kept it off for several months. And if you are in the lucky group who can significantly lessen the severity of the OSA by losing the weight, you must keep this mind: You have to keep the weight off permanently. And that's difficult. If you gain the weight back, the OSA will come back

Quote:Or maybe one of these bilevel machines might help out.
Maybe, or maybe not. In my case, switching to a BiPAP made a huge difference in helping me get to where I could sleep with the machine and feel halfway decent to decent in the morning. (I've never had one of those "Glorious this is what it's like to have a FANTASTIC night's sleep" mornings in three years of PAPing.)

But my big issue in the early going was excruciating aerophagia. I would wake up doubled over in pain in the middle of the night on the worst nights when I was using a CPAP/APAP and my stomach was swollen, distended and rock hard. It looked like I'd swallowed a basketball. The switch to BiPAP was justified as a way of making the aerophagia less painful. And it did work. I still have problems now and then, but I don't wake up in pain on a regular basis any more.

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#14
you have gotten a lot of good suggestions here. Just another thought or 2. You can adjust your EPR on your machine up to 3 and maybe that will help a little bit. I don't know if this has anything to do with your headaches but maybe your head gear needs adjusting so it isn't too tight. Check on your sleep hygiene too. Prop yourself up on 2 pillows. Maybe adjusting your humidifier might help. Also, check on allergies and/or sinus issues. These can cause headaches too. If your nose is stopped up then nasal sprays can help.

I agree that tightening up your pressure may help you. AND, look at the detail in sleepy head and rescan as suggested.

I don't know if this is helpful or not but just trying to give you avenues to check on. I hope you can get some resolution soon

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#15
Just a quick note - after reading all the follow up comments here by cleanser, I stand by my original statement even more firmly - I do not think that this is PAP related at all, although fine adjustments of the PAP device and headgear are a good idea anyway. This sounds to me like other outside factors and need to be addressed separately. Ask your GP for a Full Metabolic Panel to see how your vitamin levels, thyroid and other levels are doing. Next time you see your dentist, ask him to check for grinding. Have your eyes checked, too, while you are at it, as a bit of this sounds oddly like a bad correction on your eyewear. Almost none of your daytime symptoms sound to me like OSA induced symptoms, and from what I can glean from your numbers here, which are a titch confusing (consider posting a chart of a good and a bad day here to make it all a bit clearer) you have pretty good numbers. Ignore the pie chart, as that is just confusing you, your hard numbers and the graph charts are what tell you the real story.

Since you live in Canada, you deal with the gatekeeper concept - you have to have access to specialists through your GP and so use your GP for all his worth. Most GPs in Canada, although under time pressure, will make sure that your questions are properly addressed, even if it takes time to get the appointments. And get off the Advil for a while, see if you can tough it out - just a thought, but can you tolerate Robax Platimun or one of the other Robax family (Robaxicet, etc)? They contain a mild muscle relaxant to help break pain cycles - it may be a better deal for you than Advil for now. Either way, cut back on pain medication if you can. It is not helping you. A hot, relaxing bath would do you better in that respect.

And yes, drop 50, your heart will thank you for it, and so will a lot of other inner organs, even if it doesn't stop your OSA. But surely you meant kilos, not pounds - since when did Canada go back to the Imperial system?
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#16
(11-02-2013, 11:58 PM)robysue Wrote: Maybe, or maybe not. In my case, switching to a BiPAP made a huge difference in helping me get to where I could sleep with the machine and feel halfway decent to decent in the morning. (I've never had one of those "Glorious this is what it's like to have a FANTASTIC night's sleep" mornings in three years of PAPing.)

I hate to add, in the 12+ years that I've been on my machine, I too have never had one of these mornings. YES, I am overall *much*, much better than prior, but I still need an hour or two to 'wake up' each and every day.
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#17
I don't have glorious mornings either. I would be greatful not to wake up many times during the night.

I am very greatful that I DO wake up alive and able to do things and I am NOT sick!!
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#18
(11-03-2013, 01:41 PM)me50 Wrote: I am very grateful that I DO wake up alive!! lol

What He said...
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#19
There are simple tests we can all take.
When you wake up in the morning look in a mirror. If you see yourself looking back, it is a good day.
Look at some grass. If you are looking down, it is a good day.

After 3 years I am still waiting for one of those glorious days. When I pass the above tests I am happy.
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#20
Again thank you all for your responses,
I have had a few of those glorious days where I feel like a million bucks - I now realize that people like Tony Robins, Bill clinton etc... (motivational speakers/presidents what ever ) also wake up feeling like a million bucks prolly every day , this why they are where they are in this world.

As for my head aches, I have a mouth gaurd , I have glass's, I got blood pressure pills, seen a neurologist and got an MRI, as well as maxillofacial surgeon. Ive been through the whole works for these head aches. All I can tell you is that when last summer I turned that pressure down to 4 -13 I felt amazing for a few weeks - NO HEAD ACHES, NOT TIRED until like 10 pm (i wake up at 6 am) and no ADVIL
Lets just forget about my head aches - the issue here is that I'm using this machine for 7 plus hours every night and I'm not getting no where near the desired results although I have gotten a taste of them.
And when I say 50 I mean LBS not KG's.
Let me figure out how to take a screen shot so I can post some slepy head data.
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