CPAPtalk.com

Enchanter wrote:This is why I'm worried. I hope you get better. I'm worried because if the CPAP doesn't work, do I have to wait another 10 years? What is causing him to be tired? Why doesn't he know?

I would say that definitely there is more to me than just Apnea. The twitching, jerking, moving, continuous arousal, nightmares etc. are indicating something worse. The suggestion of increasing the floor of the pressure has had ok results for me, for example. I haven't even had coffee this morning. -- still not solving the problem but it gives me hope

You are going to need to register here at the forum and long in to be able to insert images.
new screen shot thread that is better with Imgur stuff viewtopic/t103468/Need-help-with-screen-shots.html
IMGUR instructions from Kelvin https://sleep.tnet.com/reference/tips/imgur
Please see above for instructions as well as examples of what we like to see.

I was able to backdoor into to your images but the trend graphs are pretty much useless. Too much stuff in a tiny space.
Need to see daily detailed graphs as well as that AHI stuff on the left side....though from the Flow limitation numbers it doesn't look like it will be all that exciting.
And might as well be the detailed data with the pressure increase and not old data.

I sympathize. I can relate to your tired feelings. I too have increased exercise and improved diet, just to feel sleepy in afternoon.
This site has already helped tremendously. I am new but..... the PLM idea seems a good possibility. Also, (and I throw this out there), what about your folates. I (and apparently 40% of general pop.) have the MTHFR gene mutation. The mutation prevents the body from nabbing the folates in our diet and converting them to methyl folate. These low methyl folate issues cause alot of problems...depression, OCD, hormonal imbalance, cholestrol, anemia.
There is a new medical food supplement called Deplin now. Still in early stages, but users have their forum and swear by it.
Enough said....I am checking into this Deplin when I get my doctor issues resolved.
Hope this helps!

[quote="robysue"]deadtiredcanadian,

The fact that you are using your APAP wide open (4-20) does mean that it's possible that the pressure variations may be causing some spontaneous arousals. That's why several members have suggested either tightening the APAP range or trying straight CPAP for a week or two. Those are ideas that are worth trying. My guess is that you're not going to see much difference in the AHI data, but if pressure fluctuations are causing some spontaneous arousals, then less fluctuation may allow you to get better quality sleep.

This is what I tried, it worked wonders. I had my APAP settings at 7-15, normally would hover around 13 for the night but I felt tired and sleepy during the day. I decided to try changing to CPAP mode with a setting of 11, to my surprise I feel sooooo much better, my energy is better, I still get a little sleepy after lunch but thats just normal for me...lol. Wish you well in your search for the optimum settings.

Has your blood work include hormones and thyroid? Just curious as I didn't see that mentioned. Not all blood work includes that.

Related to this, I have a very (very) hard time losing weight. I do high intensity exercise twice a week and have been on very restrictive diets and my weight loss rate is very slow. This has motivated me to seek further cures for my sleep as I am now realizing that as long as I have this severe sleep problem my body is going to be in ultra conservation mode making it extremely hard to lose weight.

Same here. After initially using CPAP, I lost 20 pounds. A year into it, I have not lost anymore weight. I do intense cardio 4 times a week and strength training 3 times a week, and I have not lost anything! The initial 20 pounds was before I started the exercise routine. I feel a little better now that I exercise more consistently, but I am still so tired.

The sleep doc and I have been fiddling with the pressure, settings, and machines for months now. I am still so tired, and I don't think it's the CPAP. But now that I have sleep apnea, when I bring up severe fatigue to my internist, he refers me to the sleep doc or says it's depression. But doctors I saw before him said my fatigue was depression, but after I switched doctors, I found out I was had anemia and severe sleep apnea, among other things. I may have been walking around those conditions for years.

I can't take it anymore and have little quality of life as all i can manage is going to work each day. It has ruined my social life and general enjoyment in life. My labs are "good". Does anyone know who to get a doctor to find the true source of a problem?

I hope things get better for you. Please keep us updated.

OB, has your anemia been treated - because it can make you not good for anything much!

deadtiredcanadian wrote:That was my first impulse this morning, to bump the low pressure to something higher -- however when I look at my average AHI for such a long time it seemed that the pressure is working for me; otherwise I should have more AHIs, no?

It also seems that the most the machine gets to is 7 or 8 throughout the night.

I can definitely try that and if there's no other option will do that. I am aware that the 4-20 is the default setting and would gladly change it, I'm just wondering if the problem is the pressure, why are my AHIs so low?

I've had great AHIs at pressures 6-15, 9-15, 9.5-12, 9.5-13, 10-12, 10-14, 10.5-14, etc. In my particular case. apneas may clear mostly at lower settings but my oxygen sats/desats, at least on the titration study, indicate inadequacy below 12cm (supine)!

What was the fixed pressure setting recommended in your original titration study?

I do not understand at all a setting of 4-20cm for a person with such a high untreated AHI. And I also go along with other suggestions to initially raise your minimum pressure to 7 or 8, and perhaps consider purchasing an overnight pulse oximeter. Perhaps oxygen sats/desats may be an issue for you, too. At the worst, you may be able to rule out that issue.

In any event, another sleep study certainly seems warranted after such a long time since the last one.

Julie wrote:OB, has your anemia been treated - because it can make you not good for anything much!

Yes, thanks for asking. That was taken care of before I started CPAP. The best thing solving that issue did was allow me to get out of bed each day, and start into an exercise routine (though very slow at first), and have a moderate increase in energy to allow me to prepare healthier foods. Whereas before, I could barely make it through the work week and was calling off work sick by the end of the week. It also eliminated some random unexplained symptoms that I had been bringing up to my previous doctor for several years.

My personal experience says that AHI numbers, data, only tells only part of the story.

If you feel like a zombie then you are not getting the proper sleep cycles regardless of what the AHI shows. I had restless sleep too because my brain would bump me out of deep sleep / REM to get me breathing level back to normal. You roll around , much of the time unconsciously, to start breathing again but the damage to your sleep cycle has already taken place. Then this process repeats again and again. Deep sleep is restorative sleep, and it appears you may not be getting enough. Remember dreams is sometimes proof of a REM cycle getting cut short because your breathing slowed down, brain wakes you and now you remember the dream.

You have a fairly decent AHI because your brain did its job and got you breathing. But Here's the kicker --- your CPAP did not do it's job and keep your airway open.

After 15 years of tiredness with 100% compliance I say that CPAP won't completely solve your problem. If was going to work, it would have by now with all your attempts a various masks, pressure, etc. There are many people that just have a small airway, a space problem, bad geometry, tongue too big and insufficent space to move to out of the airway. I know this for a fact because I am one of them. CPAP does not work for all people because some have conditions outside the scope of what pressurized air can do.

Utilmatley what solved the problem for me was a few surgeries to create more space + use dental appliance + take allergy med during allergy season. After a year or so of 100% compliance with CPAP, and still feel bad, it's time to look elsewhere for the solution.

Not sure why no one noticed this before, but you mentioned in one of you're earlier posts that you take B6. It sounded like you take it prior to bed. If so, you should be aware that B-vitamins can disrupt sleep. Quite significantly, in fact. I would suggest taking the B6 in the morning to see if that helps with your night-time restlessness.

I wonder how the OP now feels ?

I'm curious, is your throat dry upon waking?
I'm having a similar experience and am about to go back to a chin strap or mouth taping to see if I feel better.

I'm with you, 7 or 8 hours sleep one would expect to feel rested.
Hope this helps.

Sometimes, the tiredness lingers on. For me it did for many years. I think it's better now.

At one time I took Provigil (Modafinil). It helped somewhat, but I didn't like that way it affected me.