Sleep study results not bad, why do I feel awful?

One thing that I didn't understand in my study was the latency to REM sleep and that it was 225 minutes. What does this mean? I've been searching online but don't think I understand.

Desperate_in_DM wrote:My sleep doctor noted (but I did not include it here) that he feels I suffer from psychophysiological insomnia. Had to look that one up. . Seems I am putting too much stress on myself to sleep. He also wrote that he wants some sort of insomnia work-up done. I don't remember his exact wording as I'm not at home.

Maybe you know the reason why you can't fall asleep without some expensive work-up, or maybe you need help to figure it out. I will share this with you. During my diagnostic study, the bed was very hard, and I laid on my left side until my left hip (and ear, because they had a lead behind the cartilage of my ear and I was too ignorant to know it didn't need to be in that location) were in throbbing pain. Then I laid on my right side until my right hip and ear (ditto) were throbbing. Then I spent several hours on my back, lying there awake because I was in tremendous pain and because I can't sleep on my back.

In the analysis, they actually had the temerity to suggest that I needed some work-up for insomnia! They didn't even bother to ask me why I wasn't sleeping. It was no big mystery to me! Had they just asked, they would never have concluded that I have insomnia. I do not have it.

The point is, do you know why you can't fall asleep?

My sleep study showed mostly hypopneas and very few apneas as well. But with about 70 hypopneas an hour, I was awakening/arousing about 80 times an hour. Now your number is much lower.. around 20 an hour.. but realize with that, you're partially waking up every three minutes! You don't notice it, but your body feels that little jolt of adrenaline and reacts to it. So of course you're not waking up well rested.

He wrote that he wanted the insomnia work-up at my initial consultation, but reiterated it after my study. Those beds are like cinder blocks covered in a sheet! The sleep doctor said most people will only sleep a couple of hours.

I think in some part my insomnia comes from not wanting to feel bad again. By that I mean that in the evening I'm utterly exhausted, but my joint pain, nausea, and splitting headaches are finally gone. If I go to sleep I know I'll wake up feeling like hell again.

I know it's stupid. It's a vicious cycle. I don't want to fall asleep for fear of waking up and feeling worse, but I'm never going to feel better until I get more sleep. That's my best guess for the insomnia anyway.

Oh, I guess I lied about how much sleep I get. Some nights are 7-8 hours straight through. Some nights my son wakes me up 1,2 or even 3 times (he has reflux that is hard to control even with meds). I always go right back to sleep, but I still get up several times. I'd say this happens 4 nights a week.

Ignore what "category" you fall into (mild, moderate, or severe). Unless you can tell me that your sleep lab used the Chicago Criteria to diagnose you, which are the most lenient, your hypopneas may have been scored otherwise elsewhere. Also, I've never seen anything to suggest that severity of apnea (even if everyone would score things the same way) correlates highly with severity of symptoms. Just look at me: RDI of 15.7 (REM RDI=58) and the quality of my life has tanked over years.

I think it would be helpful if we could get you to post your issues on one thread, that way those who are responding on one of your threads don't miss information you're posting on another thread. Maybe you could pick one (this one or the witch doctor one) and then post a message on the other referring everyone to the link you've selected so we don't have two going simultaneously. Just a suggestion to make it easier for people to help you.

Desperate_in_DM wrote:One thing that I didn't understand in my study was the latency to REM sleep and that it was 225 minutes. What does this mean? I've been searching online but don't think I understand.

It means it took 225 minutes, which is well over 3 hours, for you to get into REM sleep. That's a little long, but it was in the lab, so who knows how it goes at home?

Desperate_in_DM wrote:I think in some part my insomnia comes from not wanting to feel bad again. By that I mean that in the evening I'm utterly exhausted, but my joint pain, nausea, and splitting headaches are finally gone. If I go to sleep I know I'll wake up feeling like hell again.

That's perfectly understandable. Everyone would be a bit sleep-reluctant with something like that going on. I wonder if you got a nice long sleep if you would still wake up with a headache, nausea, etc.?

Can you remind us what the pressure is on your machine? I vaguely remember you saying that you wake up with this pressure in your head, and I'm wondering if the pressure of the machine is contributing to that. With the low AHI you are getting, you might be able to back off the pressure a bit.

Also, are you sure you don't have the air vents in your mask blocked off? I think there was discussion about that, but I just wanted to remind you to make sure you are not blocking the vents in any way. It might be worth trying a different mask, too.

Finally, what about raising the head of the bed? It occurs to me that you may be sleeping too "flat" which could lead to both the headache and nausea. I don't know if your husband could put up with it or not, but can you find a way to raise the head of the bed?


I second the motion that SleepingUgly made to consolidate your problems into a single thread.

I have symptoms similar to Desperate_in_DM's....

....and one thing I have been wondering about is the drug Xyrem, that is very hard to get. It helps you get into the deep stages of sleep. It is hard to get a hold of, because it's known as "the date rape drug." But I think most sleep specialists do prescribe it?

I understand that it does nothing for OSA, but I have been wondering, if the OSA treatments don't work, maybe taking Xyrem would help me feel a lot better the next day. Some people with chronic fatigue syndrome or fibromyalgia swear by it.

Thoughts?

Well it sounds to me that you are just stressed at night trying to sleep. Lots of people are that way - especially if some Dr. is trying to tell you that there is some real issue going on there. I've known lots of people in my life who couldn't fall asleep right away. It's just the way they are/were. I can't imagine that being abnormal in today's world.

CAsleep wrote:I have symptoms similar to Desperate_in_DM's....

....and one thing I have been wondering about is the drug Xyrem, that is very hard to get. It helps you get into the deep stages of sleep. It is hard to get a hold of, because it's known as "the date rape drug." But I think most sleep specialists do prescribe it?

I understand that it does nothing for OSA, but I have been wondering, if the OSA treatments don't work, maybe taking Xyrem would help me feel a lot better the next day. Some people with chronic fatigue syndrome or fibromyalgia swear by it.

Thoughts?

I have only heard of it in the context of treatment for narcolepsy. Supposedly it works well for narcolepsy and not well for idiopathic hypersomnia. There are lots of things I would try first before resorting to Xyrem. Also, she has a baby she's up at night with. That is not a good option.

How would I consolidate into one thread? Just copy/paste? I'm not being snarky, I really don't know the best way to approach that. I'll have to look through the other thread "witch doctor". I started that just wondering if anyone had success/felt better doing breathing techniques or yoga or something. I'll have to see what else was discussed.

LoQ wrote:Can you remind us what the pressure is on your machine? I vaguely remember you saying that you wake up with this pressure in your head, and I'm wondering if the pressure of the machine is contributing to that. With the low AHI you are getting, you might be able to back off the pressure a bit.

Also, are you sure you don't have the air vents in your mask blocked off? I think there was discussion about that, but I just wanted to remind you to make sure you are not blocking the vents in any way. It might be worth trying a different mask, too.

My pressure is set at 6. The pressure in my skull I feel is an all day/every day thing that happened long before CPAP, so it's not from the machine.

I don't think that my vent is blocked. I sleep on my side with a neck roll pillow. I do wonder if a different mask is in order, but I just got the small size nostril pillows for my mask yesterday and I wanted to see if the small will work better for me than the extra-small did.

I do appreciate everyone's input and help. I'm trying to get my head wrapped around how to facilitate my own therapy because I feel the clinic, like most apparently, are dismissive and don't care as long as they see the $.

Desperate_in_DM wrote:How would I consolidate into one thread? Just copy/paste? I'm not being snarky, I really don't know the best way to approach that. I'll have to look through the other thread "witch doctor". I started that just wondering if anyone had success/felt better doing breathing techniques or yoga or something. I'll have to see what else was discussed.

I would pick a thread, like this one, and then post on each of the other thread(s) something to the effect of having moved the discussion to this thread, and then post a link to this thread. Otherwise you run the risk of people giving you advice based on incomplete information when you've actually provided the information, just in a different thread.

More info into why I am feeling worse after being on CPAP for a month and more info into medical "history" found here.

viewtopic/t55095/My-friend-the-witch-doctor.html

Desperate_in_DM wrote:Actually the doctors determined I had a vitamin D deficiency along with a B12 deficiency last year. Seems to come and go every few years or so, not the first time I've had it. I no longer see the hematologist, but I stil take supplemental D & B12.

The "Normal" range is not nearly high enough. From Vitamin D Council website

"Take 5,000 IU per day for 2–3 months, then obtain a 25-hydroxyvitamin D test. Adjust your dosage so that blood levels are between 50–80 ng/mL"

I'm taking 10,000 units of D3 a day trying to get mine up to 50 ng/mL Right now I'm at 39 ng/mL well above normal by the lab's normal range but not high enough according to recent research.

regards
John

slaaplekker wrote:The "Normal" range is not nearly high enough. From Vitamin D Council website

"Take 5,000 IU per day for 2–3 months, then obtain a 25-hydroxyvitamin D test. Adjust your dosage so that blood levels are between 50–80 ng/mL"

I'm taking 10,000 units of D3 a day trying to get mine up to 50 ng/mL Right now I'm at 39 ng/mL well above normal by the lab's normal range but not high enough according to recent research.

If memory serves, I was prescribed 10,000 IU 3 times a week for 6 months. After that I supposedly well enough into "normal", but was told to take an OTC vit D supplement of 400 IU daily. I was just following my doctor's order that I didn't need to "megadose" any longer.