Severe Apnea under control but still tired

[LisaSch]

So, it has been six months. I use my machine every night. My AHI is .5. Sounds great, but I am still tired. I saw a sleep doctor and he said that some severe apnea people had it for long enough to damage the brain. This damage keeps you from getting the proper REM sleep and affects appetite.

He prescribed to me a pep pill, which makes me feel worse than tired. So, I am not going to continue beyond the sample. He also suggest Xyrem, but asked me to read about it first. Turns out that is the date rape drug, but it is supposed to get you into the right levels of sleep. It comes with a warning not to drive for some hours after you wake. Seems like serious bad stuff. Who can function with that? I may be tired but I don't need that.

Have any of you found a remedy for tiredness? I do work out 3 to 4 x a week. I eat well. I am overweight...but that is another thing that does not resolve and I think it is connected.

The doctor still needs to get my sleep report from the original tests. He only downloaded some abridge report from my machine. Baffled.

[Wulfman...]

I see you're using an APAP/"Auto". What are your pressure settings? If you're using a range of pressures, it could be that the pressure changes during the night are disrupting your sleep stages and causing your unrested feeling.


Den

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[Rick007]

My situation is almost identical to yours. My untreated AHI was 60 and now it is less than 1. In my case I felt pretty normal in May 2012 and by June 2012 I sometimes got lost when driving around familiar areas. I have probably had SA for many years if snoring is any indication, so why would it affect me over a one month period.

For 6 months I was treated for suspected anxiety. Then a sleep study was ordered which I had a month later. Then it took 6 months to meet with the sleep doctor. During the 5 minute meeting he said I needed a CPAP machine. I received the machine in September 2013, and had a second sleep study done in November. I had another appointment scheduled 6 months later to discuss the test results with the sleep doctor but I manged to see him 3 months before that because I was on a cancellation list. He said the second sleep test results looked excellent, and he did not think my symptoms could be caused by sleep apnea.

So now I have to wait for an appointment with my family doctor to see if he will investigate for another cause. Since about April 2013 when the sleep study was ordered he has refused to pursue any other possible causes. I have noticed that the extreme brain fog has improved, I no longer get lost while driving, but I often feel like I could fall asleep while walking.

How about yourself, did your symptoms come on suddenly, or did they gradually increase year after year. Do you see any change in your symptoms at all, better or worse? Has your doctor only considered SA as the cause or has he looked at things like hypothyroidism or hypoparathyroidism which seem to match my symptoms amongst half a dozen other causes.

[sleeplessinaz]

You may have your sleep apnea under control but there may be more health issues to address. I found out I was anemic and low on Vit. D. I felt so crappy and tired. I now take 5,000 IU of Vit D every day now to keep my levels up. Can't always get Vit. D from the sun. Got my anemia fixed as well.

Have you had your thyroid checked? I found put mine was under producing which causes extreme fatigue and weight gain, I take Levothyroxine now every day to boost my levels of the thyroid hormone.

Maybe it is time for some simple blood work?
Hope this helps,

[LisaSch]

My pressure is set at 9 and they said it seemed good. Did my symptoms come on suddenly? I don't know. When I got divorced in 92 my weight shot up 70 pounds, I started to snore. I had some anxiety attacks prior that I wonder now might be sleep related. A sleep study I had 10 years ago came up negative--I believe this was a bad study now. The one I had recently was severe. Doctor said I had sleep Apnea all my life to register this. I stopped breathing 100 times per hour. Now, my AHI is great. I remain tired. Afternoons I yawn. I never fall asleep or want to I am just dull tired. I have a physical coming up...I am on a low dose of thyroid even though blood work says I am normal. I fight low D all the time. I take 5k or 10k of vit D daily.

[jdr999]

I have bad OSA also -- desats in the low 60%'s and 90+ ahi.. It made perfect sense to me after I was diagnosed that it was apnea that was beating the hell out of me.

Fast forward one year, apnea under control but still feeling quite poor.

After many, many doctors I've now been diagnosed with chronic lyme disease and a few other co-infections. My body is reacting to treatment - I'm definitely herxing from the medications so we may be on the right track. If so, I'll be undergoing treatment for several years it seems..

Time will tell

[Too tall]

I would go to a GP and get a fasting blood test. There's a whole lot of other things that can cause tiredness besides Apnea. In fact I would guess, repeat guess, Apnea is probably at the bottom of the list.

[Rick007]

? I don't know. When I got divorced in 92 my weight shot up 70 pounds, I started to snore. I had some anxiety attacks. A sleep study I had 10 years ago came up negative--I believe this was a bad study now. The one I had recently was severe. Doctor said I had sleep Apnea all my life to register this. I stopped breathing 100 times per hour. Now, my AHI is great. I remain tired. Afternoons I yawn. I never fall asleep or want to I am just dull tired. I have a physical coming up...I am on a low dose of thyroid even though blood work says I am normal. I fight low D all the time. I take 5k or 10k of vit D daily.

There seems to be no doubt that you have SA, but you have it under control now. Having discovered the SA and obtaining treatment should certainly extend your life and prevent any related health problems. Your original post suggested that maybe years of SA has caused permanent damage, and that is why you continue to feel tired.

I think it is much more likely that are still suffering from anxiety, depression, the known Vitamin D deficiency and possibly any number of other related problems. The important thing is that you not just try and live with it because you think it is permanent. Get your doctor to perform additional tests.

As I said, when my doctor suspected SA almost 1 year ago, he will not pursue any other possibilities. Now that my sleep doctor has said i should be feeling better ( as yours has done) I just hope I can get my doctor moving again. The thing that gives me hope about this not being permanent damage, is that for short periods each day I feel not so bad, and then a few moments later I feel like I need to lay down and take a nap, even if it's in the middle of Home Depot.

Don't give up or accept this as permanent.

[SleepDisturbed]

Do you drink alcohol? It can really destroy your quality of sleep.

[Cuda]

I second a possible vitamin D problem. I had that myself. Very fatigued, foggy headed, weak. Took 4000 a day and started feeling much better.

[LisaSch]

Nope I don't drink. I eat pretty healthy. Sleep a good 7 to 8 hours. AHI under control. I take 5 to 10k units of Vit. D.

[SleepDisturbed]

Well, you are ok on a lot of issues. Do you have Sleepyhead or some other software set up so you can examine your therapy data in detail for yourself? If not, I think in your situation that would be the next thing to do, then post some typical nights and let the experts here check it out for you.

[zoocrewphoto]

I discovered something recently that has really affected how I feel and how I sleep.

Back when I started cpap almost 2 years ago, I did really well, felt much better, had no problem with compliance, etc. Recently, I have been using my machine, but taking it off in my sleep, and I would totally fail compliance. And since I am not getting full nights with the machine, I am not feeling as good as I was. I spent a lot of time trying to figure out why it was easier before and not so much now. I finally realized the problem. When I started cpap, I was on 3 medications for high blood pressure. My pressure was down with medication, but still not normal. Once I added the cpap, I got into the normal range.

Well, I had a lot of asthma, cough, and hip pain issues that did not get addressed well with my doctor, so I decided not to go back., And I put off getting a new doctor, so I ran out of medications. I've been out for several months. I finally called a doctor that my co-worker recommended, and I am thrilled. It turns out that one of my previous blood pressure medications was not good for asthma, so she switched that one, and I am now on 3 medications (2 of the same, one different). I also have a daily asthma medication that used to be as needed.

I am suddenly sleeping better with my machine. All 3 nights since being back on my medications, I have slept better and kept my mask on longer. My blood pressure is going down, and the last two days, I have felt great. Back like I did when I first started cpap.

So, I would suggest looking into any other health issues, and how they are being treated (or not treated). For me to have success with my blood pressure, I need to be taking my medications and using my cpap. For me to be successful with cpap, I need to be treating my blood pressure at the same time.

I honestly never noticed any improvement when I first started taking the blood pressure medications in 2011. It was one first, then doubled, then a second one added, then doubled, and then the third. I saw results in the numbers creeping down. But I never noticed a change in how I felt or how I slept. But clearly it was helping me. This time, I restarted all 3 at once, and my sleep improved immediately, and I feel better almost immediately. I went to work yesterday and actually wrote on my chart that I am keeping that I feel great. I was really surprised. I was just hoping to get more hours with my cpap.

[LisaSch]

Yeah, I have been pretty healthy. Not on any meds except a very low dose of Armor thyroid. I take my vitamins...I take lots of D but I am one of those people who stays below 30 even when I take loads of D. I have some doctor appointments.

Lisa

[Too tall]

Yeah, I have been pretty healthy. Not on any meds except a very low dose of Armor thyroid. I take my vitamins...I take lots of D but I am one of those people who stays below 30 even when I take loads of D. I have some doctor appointments.

Lisa

You mentioned thyroid. I guess you know this, but if your TSH level is off, that can wear you down pretty fast.