Still feeling terrible (data analysis)

[Alshain]

Now for the HARD, but more important question:

I completely missed this post. As mentioned, D and Thyroid have been done Diabetes and Lyme as well (around here Lyme is a standard test, lots of deer, almost no cold weather). Doc had me take this little 20 question quiz for Depression, he never told me the results. I don't think I'm waking excessively, if I am I don't remember it. I feel like when I wake up I've slept fine, but I'm still tired from the moment I wake up. I have noticed when I wake with the alarm clock (weekdays) I feel terrible, but if I'm allowed to sleep in I feel a lot better.

[Pugsy]

I have noticed when I wake with the alarm clock (weekdays) I feel terrible, but if I'm allowed to sleep in I feel a lot better.

Hours of sleep?

Also I recently read something about waking up during a particular sleep cycle messing with how we feel because the cycle is interrupted. Something about changing wake up time to be out of that cycle. Of course I can't remember the particulars.

[Alshain]

I have noticed when I wake with the alarm clock (weekdays) I feel terrible, but if I'm allowed to sleep in I feel a lot better.

Hours of sleep?

Also I recently read something about waking up during a particular sleep cycle messing with how we feel because the cycle is interrupted. Something about changing wake up time to be out of that cycle. Of course I can't remember the particulars.

On weekdays it's about 7.5, on weekends, closer to 10. Some nights I have the occasional bout of insomnia, but that is the exception not the rule. That's actually why I posted a few days ago data. Last night I didn't get to sleep until well after midnight, but I still feel bad even when I do. Last time that happened was months ago. I think I've seen that article too, but how are you going to stop using an alarm clock? Gotta be at work on time.

[Pugsy]

I think I've seen that article too, but how are you going to stop using an alarm clock? Gotta be at work on time.

Go to bed earlier... Get up 30 minutes earlier...Whatever it takes to hopefully wake in a different sleep cycle.. Not sure how much this really plays into how we feel but it sounds reasonable and worth a try.

I will share this.. If I get 6 hours of sleep I feel like total crap. If I get 6 1/2 hours of sleep I feel marginally better.
7 hours and I am back to almost crap. 7 1/2 hours and I feel really pretty decent for me. 8 hours not as good as 7 1/2 hours but better than 7 hours. 8 1/2 hours I am almost a new woman but that is rare because back pain normally prevents me from sleeping that long. I will feel extreme need to nap on any days where I get less than 7 1/2 hours of sleep.

You might start a sleep log to see if you can spot a pattern. Sure wouldn't hurt.

[JohnBFisher]

Your basic question "If the data is so good, why do I still feel horrible?" is one reason that doctors will often downplay the statistics provided by the machine. There are so many things (as you are learning) that can impact your sleep and how you feel when you awaken.

One thing to consider is to sort out sleepiness from fatigue. (You may have already done this. Consider this generic information).

Sleepiness can fairly easily be gauged by the Epworth Sleepiness Scale:

http://www.stanford.edu/~dement/epworth.html

A fairly high score (8 or above) indicates you are sleepy, rather than fatigued. A lower score, but you still feel "down" probably indicates more of a fatigued state. Understand this is not a cut an dry explanation. Nor is there anything scientific in this. However, I've observed there are times I am fatigued (due to my neurological symptoms) but not sleepy. And I've seen that fatigue - such as when I deal with lots of sound and/or lots of visual stimulus - can make me sleepy. Essentially, I need to "reset". But that feeling of feeling beat to a pulp is there in addition to feeling that a nap will help.

So, if you feel sleepy (such as, could easily fall asleep during a meeting), then you need to tackle that. It could be there are other issues listed in your sleep studies that might need to be addressed. Often doctors will want to address the obstructive sleep apnea first. This often helps clear up other problems (periodic limb movements, arousals, etc). But if you continue to feel poorly, you and your sleep doctor may need to see if those other issues can be addressed.

And it sure sounds as if you and your doctor are covering your bases for the fatigue side. (Checking for diabetes and thyroid problems).

Hope you can make steady and swift progress toward better sleep and rest.

[cflame1]

have you ever been checked for TMJ?

[robysue]

RobySue, good information. Thank you very much. So regarding the 24L/min limit. Since my leaks are so low, would it be reasonable to loosen the mask and make it more comfortable and actually allow it to leak some and still be below the 24L/min? Right now, I don't like this mask cause I have to cinch it down pretty tight to stop it from leaking, but if the leaks actually can happen to a degree without impacting the performance too much then maybe that isn't necessary.

Comfort is the key. Yes, I think you might ought to try loosening the straps a wee bit at a time. But you also write:

If I can simply allow the minor leaks, the remaining problem is, as you mentioned, that the actual leak itself irritates me. I can't stand the feel that it's blowing on my eyes.

If you've got a leak blowing air into your eyes, that leak needs to be taken care of. Not so much because the leak will be big enough to affect therapy (it probably won't be), but rather because air blowing in the eyes is not only highly irritating, but also it ain't all that great for the eyes. But there's probably a "sweet spot" that you haven't yet found with the straps. It could be that you need to only loosen one of the two straps. Or maybe one strap needs to be loosen a bit more than the other can be loosened. Re-read JanKnit's tips for Taming the Mirage Quattro. She's got a bunch of really good tips for fitting the mask you're using.

Sometimes I think I feel a leak when there isn't one. I thinkit's caused by air movement between the two layers of the cushion (the "balloon" effect of this mask), I feel it inside the mask, and I think it's leaking but if I put my finger up there I can't feel it leaking out. So I end up tightening it anyway. Drives me crazy.

The mask you are using does indeed use air to inflate the cushion to seal the mask. It could be that when you are feeling/hearing/thinking there's a leak, that what's really going on is that the cushion is only partly inflated and the "noise" or sensations that you are interpreting as mask leaks is in reality just the mask attempting to get the cushion fully inflated. Be aware of this fact: Since the mask cushion is touching your head, any noise of air movement in the cushion will be conducted directly into your inner ear---bypassing the outer and middle ear entirely. And it could just be that your brain is misinterpreting the sound of the conducted noise of the cushion attempting to inflate as the sound of a mask leak. So again I suggest: Re-read JanKnit's tips for Taming the Mirage Quattro.

I still think I have Fibromyalgia. None of the doctors will say that though because I don't meet the 'perfect criteria' for that diagnosis. All the symptoms are there and all other tests have failed to show any other causes (except the PSG), but I'm a 31 year old male, which would make me a 'rare' fibro case. So they slap me with a "it's got to be the sleep apnea" and stop paying attention after that. Either that or they say it's a somotoform disorder and refer me to a psychiatrist.

Ah, welcome to the world that we middle-aged ladies face whenever we're complaining of "vague" symptoms of fatigue, aches and pains, and sleep disruption, except in our case we always get told, "It's just menopause." More seriously though, from what you've said later it sounds as if you've been through a fair amount of testing to eliminate the typical suspects. But a couple of them turned out to be positive:

Yes, actually one of the first things they did. It came back positive for Hashimoto's. But eventually I got suspicious and quit taking the pills and month later asked them to run it again, came back negative. Had it run several times since and it's always negative.

Vitamin D, yes. Again, came back very deficient. Put on 10000U pills. Next test looked fine, still take Citrical.

You say that you eventually quite taking the thyroid meds for Hashimoto's, but subsequent tests indicate you don't have than any way.

And you were put a super-duper dose of Vitamin D when the doc prescribed the 10,000 IU pills. (100% of the RDA for vitamin D was a mere 400 IU until very, very recently when the government upped it to 600 IU. See http://ods.od.nih.gov/factsheets/VitaminD-QuickFacts/ for details.) And the follow up Vitamin D test looked fine. So the prescription Vitamin D pills worked in the sense they got your Vit. D back up to normal. But now you are no longer taking the prescription Vit. D pills, just Citracal---an OTC calcium supplement that will have from 250 IU to 1000 IU of Vitamin D "per serving" depending on the variety, and the only variety that has 1000 IU of Vitamin D is the Citracal Slow Release 1200 kind.

So how long ago did you finish the 10,000 IU Vit. D pills? And have you had the Vit. D checked recently? Because it's a reasonable guess that you are getting somewhere between 250 and 2000 IU of Vitamin D from the Citracal. In other words, at most the Citracal is providing a paltry 1/5 of the dose of Vit. D that you were originally put on. And probably the Citracal is providing far less than 2000 IU. It's worth talking to the doctor who prescribed the 10,000 IU Vitamin D pills and asking (a) whether you might be deficient in Vit. D again and (b) What level of Vitamin D supplementation he recommends you take on a daily basis.

Finally, you write:

For the improvement being gradual, no, not in this case. There has been no improvement, there has been further deterioration. When I started CPAP at the beginning of this year, I didn't feel as bad as I do now, which is why I went into denial, (and really I'm still there), as to whether or not I actually have apnea. The deterioration was not small either. When I started CPAP I had minor discomfort. Now I'm counting myself lucky I haven't been fired from my job yet or gotten into a car accident. I feel like since starting CPAP I've gone from being irritated by a problem to being completely disabled by it. Now, I'm not saying the CPAP is doing that, it's probably just coincidental that it started getting worse when I started CPAP. I want to give this every possible chance to succeed, but it just isn't happening. I have a feeling I'm going to have to collapse somewhere or end up in that car accident before a doctor will take me seriously.

I hear you. I really do: The first four months on xPAP were the absolute WORST of my whole life in terms of how I felt and how dysfunctional I became. It felt like Hell on Earth at the time. I'm a tenured college professor and there were multiple times during the Fall 2010 semester (as well as the Spring 2010 semester) that I thanked God for tenure. Because I can't imagine how much damage my dysfunctionality would have done to "making a case" for tenuring me farther down the track if I were only tenure-track. Hubby was driving me everywhere because I was deeply afraid---for the first time in my life---that I'd fall asleep at the wheel. The dysfunctionality was far, far worse than any thing I'd ever felt before---including the periods with newborns and the sleep deprivation that comes with care of a newborn child. Months five and six were where I was able to start digging myself back out of the deep, dark hole I'd been thrown into by CPAP, insomnia, and chronic migraines. And then tree pollen and depakote side affects provided a one-two punch to bring me back down almos to the same level of dysfunctionality I had experienced during those first four months of xPAPing.

I'm now 10 months into xPAP and things are finally getting better mainly because (1) the migraines are under control, (2) the allergies are better controlled, (3) the insomnia is finally becoming less of an issue, (4) the aerophagia is down to tolerable levels 80% of the time, (5) I've been xPAPing long enough now where my highly sensitive body doesn't SCREAM at me about every tiny hose-induced discomfort every time I put the hose on my nose, and (6) I've been working with a psychologist with expertise in CBT for dealing with my on-going anger towards my OSA diagnosis and the disruption the BiPAP has caused in my life.

So---if you can get those other conditions you're dealing with at least stabilized and if you can get that mask to be comfortably loose without leaking into your eyes, then maybe your body will be able to relax enough to accept the CPAP stimuli as "normal". And at that point, you will be able to start crawling out of the dark hole you're currently in and then (and only then) will you be able to start FEELING the good the CPAP is doing for your body in terms of helping your heart, lungs, blood vessels and more stay as healthy as they currently are.

[robysue]

Alshain,

I am a life-long sufferer of chronic headaches---migraines, tension headaches, sinus headaches, tmj headaches, stress-induced headaches, too much caffeine headaches, too little caffeine headaches, not enough food headaches, and likely OSA headaches that were simply too subtle to distinguish from all the rest. And at least one or two other kinds that I can't recall right now.

You've mentioned your own chronic headaches now several times. Like many (most?) sufferers of chronic headaches, you tend to minimize them---in terms of the level of pain and, more importantly, in terms of how they affect the quality of your life---even when the pain is "minor." And I say this as someone who has spent years minimizing my own chronic headaches to the outside world, while tending to make my family "suffer" right along with me on my worst days.

A nasty little fact is that chronic pain---even when it is mild chronic pain--- takes a significant toll on the quality of our daily life. And even mild chronic pain can adversely affect the quality of our sleep in multiple ways.

So even though we chronic headache sufferers tend to do our best to "ignore" the pain because it is "just annoying" and "rather minor", it does indeed negatively affect our lives in profound ways. But many (maybe most) chronic headache sufferers suffer in silence. They'll either not report the headaches at all when seeing the doctor or they'll dismiss them and defer if the doc suggests seeing a specialist to find out what's really going on.

Because the nasty little secret about chronic headaches is that our culture tries to pretend they don't exist. Or they are a sign of "weakness". There's a real cultural perception that "I have a headache" is just a little white lie meaning "I just don't want to do x, y, or z". And culturally it's OK to use that "excuse" once in a while,but when someone says "I have a headache" too frequently, he/she is perceived as a "whiner."

About your own headaches you write:

My headaches haven't been too bad ever really, just annoying. I classify them as migraines only because the symptomatic location of the pain (usually the right side of the head above the ear). But the level of pain has never been really bad, no ocular or auditory problems when they occur either.

and

Chronic migraines are the same. They fade in and out and I usually go to bed when they stop and they come back the next day, but late in the afternoon. Sometimes they are "ice pick" style.

In my own humble opinion as a chronic headache sufferer who also has had a really tough time adjusting to CPAP, I think that getting the headaches under control is critical for getting to the point where CPAP will seem like either a neutral influence on the quality of your day-to-day life or a positive influence. Because the headache pain, as minor and annoying as it seems to be, is likely sucking right back out of you the positives the CPAP is pumping into you----in terms of how you feel each day.

Have you ever consulted a headache specialist to get a formal diagnosis of migraine headache?

Yes, they sound like migraines to me (but be aware, I'm only a migraineur, not a doctor.) It's a myth that all migraines or even most migraines come with some kind of "aura"---i.e. ocular or auditory symptoms. But that "ice pick" description is a common description of acute migraine pain. Which can be debilitating---for some people (including myself), it's only debilitating for a short period, but then what I refer to as the grumpies starts. After I'm over the "ice pick" pain, I'm usually very, very irritable, fussy, short-tempered, shrewish, and all-in-all not much fun to be around. My family hates it when I get stuck in the grumpies for hours (or days) on end because of headache pain. And your description of the more chronic headaches (one side of head and fades in and out for days at a time) is a pretty classic description of chronic migraines


What's the point of getting diagnosed with chronic migraines?

Well, first of all, there are some effective treatments---some life-style and supplement oriented, and others pharmaceutical in nature.

For the life style and supplement approaches to managing migraines: Learning triggers is key so that you can avoid the triggers where possible. And some migraineurs respond (and respond well) to rather large doses of Vitamin B2 (riboflavin) and magnesium and a herb called feverfew. There's another herb called butterbur that can help. For me, I've got a gene mutation on my MTHFR gene, and that gene mutation is likely part of why I'm a migraneur. Hence being put on a prescription form of the metabolized version of folate has helped reduce the intensity and number of my migraines and has started to give me migraine free days. (But tmj, tension, and sinus headaches remain problematic for me.)

As for prescription drugs: There are both prophylactic medication designed to prevent the headaches in the first place (useful for chronic migraines) and medication for acute attaches that you take at that first "ice pick" stab of pain.

The acute meds usually work far, far better than OTC pain medicine like ibuprofen, naproxin, or tylenol in treating migraine pain. The Maxalt I now take for acute migraines stops them dead in the tracks most of the time: As in I'm fully functional and completely free of the migraine pain within a few minutes---as in less than 30. And I don't develop the grumpies after the pain goes away.

Searching for a prophylactic med to deal with chronic migraines is challenging for many migraineurs and their doctors. The commonly used prophylactics were originally developed to treat other conditions and doctors simply noticed that their migraine patients being treated with the drug for the other condition frequently reported a significant drop in both the number and severity of the headaches. Now, it's true that I had intolerable effects to three different prophylactics this spring. But---the brief period between starting each medicine and the side effects becoming intolerable were absolutely gloriously free of headache pain. I was deeply disappointed each time when the side effects started and became more severe instead of less. But those tastes of what life is like without a day long headache fading in and out on the vast majority of days has made me very GREEDY. I want NO HEADACHE PAIN even more (at this point) than I want xPAP FINALLY MAKES ME FEEL GOOD. In part because I know that "xPAP finally makes me feel good" will NEVER happen until I'm free of the headache pain.

Finally, there are some pretty serious comorbidities of migraines, including depression, anxiety, stroke, irritable bowel syndrome, epilepsy, hypertension. The connections between migraines and these comorbidities is not understood at all. But they are there nonetheless.

So if you've never consulted a doctor about those headaches, do it NOW: An effective way to manage the headache pain will be a powerful ally in your effort to make CPAP work for you.

[archangle]

How long have you been at this particular pressure, mask, machine, etc.?

Have you tried varying the pressure a bit? Bump your pressure up 1 point or so and see how you feel after a few nights. At one time, I decided I feel better with the pressure just a bit higher than the pressure where my event numbers drop to insignificant levels.

[Alshain]

Wow, lots of stuff. Ok, I think I found a way to loosen the mask without irritating me. I went to Walgreens and got a generic eye mask, which seems to fit well under my CPAP mask. While I was there I picked up some earplugs, just to see if noise was irritating me, there is a fire station right down the road . The eye mask however seems to prevent me from noticing the small leaks around the nose without compromising it entirely (which was rather difficult to test, without being able to see the mask fit indicator, but I managed). I used to sleep with an eye mask anyway, but my old one didn't fit right under the Quattro. This one is much better, I also ordered a Bucky 40 Blinks one. So I will have a backup (which ever one is less comfortable).

There was a lot of stuff mentioned, forgive me if I miss something.

First, this is the worst AHI night I have recorded so far (2.1). Most nights are far less, but all spread out like that.


TMJ: Yes, I have this. I pull the muscle when I yawn, but my Chiropractor seems to know just what to do to make it stop for a month or so, and then I visit him again. I wear an occlusal guard under my mask for Bruxism.

Sleepiness scale: They make me take that test every time I go to the sleep doctor. I think it's fatigue, not sleepiness.

Taming the Mirage Quattro: I can't tell you how many times I've read that article. Not a lot of luck. I have trouble with the pressure on my forehead too. I've requested the DME talk to my doctor about trying the FX to see if that is better. I can always go back. But keep in mind I was under the impression I had to eliminate ALL leaks.

Headaches: I'm impressed, I had to look up the word "Comorbidity". Normally I'm the walking dictionary. I've talked with my doctor about the chronic headaches, but he seems to dismiss them like they aren't anything to really worry about. My "ice pick" headaches don't sound like yours. You can't take a anything for them because they are gone by the time you stand up to do so. These are more painful than the long lasting ones, but we are talking about the snap of your fingers and it's gone... for hours.

Vit D: This has been check recently, it seems to be doing better now.

[Emilia]

Vitamin D, Magnesium... are both very hard to absorb. I use micellized D3 as it is absorbed more readily. I take about 56,000 IU's a week... 8 drops a day. I use magnesium oil, which is put on the skin topically and is absorbed much better than pills. Most Americans are very deficient in mag.... regardless of what the tests say. Even D tests say 'normal' for D3 is 30-100, but new research says optimal is 50-75. I keep mine at 60 or close to it with constant 8,000 IU's daily. I found using mag oil diminished my aches and pains dramatically... and I was Dx'd with fibro, too. Now, I don't think I had it at all....just needed mag, and with cpap my pain is very low compared to before cpap.

My chiropractor is a young, very athletic guy who gets outdoor sun exposure all the time and eats very healthfully. He is so deficient in D it is amazing.... he needs 20k IU's daily to keep it normal.

Your fiber intake sounds about right... we need 25-35 grams daily, but most Americans only get about 10.

As for the thyroid... again, most labs score TSH as 'normal' up to a 4. The American Thyroid Assoc. uses .5 to 2.5 as their normal range. I try to keep mine at 2. If you scored a 3 or 4, you might still benefit from a small dose of hormone to bring it down slightly....can make a huge difference in how you feel.

[ultimatestrap]

Hey do you sleep with your mouth open? Are you losing all the air? Do you wake up with a dry mouth? If so, that could be one of the rasons you wake up feeling so tired! You need a chin strap....check out the ultimate chin strap for sleep apnea...it keeps your mouth closed but because of its unique design, it opens the air passages at the same time....check out the website...good luck!

[adipasqu]

As for the thyroid... again, most labs score TSH as 'normal' up to a 4. The American Thyroid Assoc. uses .5 to 2.5 as their normal range. I try to keep mine at 2. If you scored a 3 or 4, you might still benefit from a small dose of hormone to bring it down slightly....can make a huge difference in how you feel.

I just had a full blood workup because I am exhibiting hypoglycemia symptoms. My TSH test just came back this morning as a 5. I should seek hormone treatment, right? Still waiting for glucose and insulin numbers, but everything else looks normal so far.

-A

[Alshain]

Vitamin D, Magnesium... are both very hard to absorb. I use micellized D3 as it is absorbed more readily. I take about 56,000 IU's a week... 8 drops a day. I use magnesium oil, which is put on the skin topically and is absorbed much better than pills. Most Americans are very deficient in mag.... regardless of what the tests say. Even D tests say 'normal' for D3 is 30-100, but new research says optimal is 50-75. I keep mine at 60 or close to it with constant 8,000 IU's daily. I found using mag oil diminished my aches and pains dramatically... and I was Dx'd with fibro, too. Now, I don't think I had it at all....just needed mag, and with cpap my pain is very low compared to before cpap.

My chiropractor is a young, very athletic guy who gets outdoor sun exposure all the time and eats very healthfully. He is so deficient in D it is amazing.... he needs 20k IU's daily to keep it normal.

Your fiber intake sounds about right... we need 25-35 grams daily, but most Americans only get about 10.

As for the thyroid... again, most labs score TSH as 'normal' up to a 4. The American Thyroid Assoc. uses .5 to 2.5 as their normal range. I try to keep mine at 2. If you scored a 3 or 4, you might still benefit from a small dose of hormone to bring it down slightly....can make a huge difference in how you feel.

I mentioned fiber because fiber rich foods are usually full of magnesium too. I think I might be anemic though, my fingernails are pale white with a little red near the tip before the normal white area of the nail. Someone said I needed iron for that.

[nudave]

Alshain -

In regards to the Vitamin D deficiency - where do you live?