In Through the Out Door

[Polar Bear]

It will be interesting to see what sort of a reading you get tomorrow.

[majoraward]

Terrible. ZQ of 58. Wake time 59 minutes, 5 hours 52 minutes sleep, only 28 minutes of deep sleep which is a BIG problem. That is why I am tired, my wife would get a couple of hours of deep sleep. REM was 2 hours 32 minutes, the only good reading. Yikes on deep sleep will do it for whole week and look at readings again. 13% have worse sleep than me on the Zeo lol.

[rthom]

That sucks. What do you think the chances are that some of the trouble this time has to do with the machine itself? I was hoping it would be better for you this time given your recent improvement.

[debbluebird]

I have thought about getting one of those ZEO's. I bet that I get very little deep sleep, just because of the way that I feel. In regards to you, I'm wondering why you are getting very little deep sleep with the amount of time that you are "alseep". I wish there was a real answer for all of us.

DEB

[majoraward]

That sucks. What do you think the chances are that some of the trouble this time has to do with the machine itself? I was hoping it would be better for you this time given your recent improvement.

Just 2 months ago, a week before my surgery, I had a sleep study and they allowed me to use my mask and it worked fine. I have replaced the nasal pillows with new ones just last week. The machine at home is working fine, although I wish it wasn't because then I could correct it. I don't know what is going on. Maybe after a few days of data it will become clearer exactly what is going on, it could just be a fluke, although I doubt it because I knew my sleep was messed up before I saw the data. I suppose the same drugs that allow me to sleep could also be messing up my deep sleep - interesting. Sort of a damned if you do, damned if you don't type of thing - hopefully not. We could also be witnessing the Mirapex beginning to not work - augmentation - that seems more likely to me, now that I have thought of it, it seems like it may be that - also hopefully not.

[majoraward]

I have thought about getting one of those ZEO's. I bet that I get very little deep sleep, just because of the way that I feel. In regards to you, I'm wondering why you are getting very little deep sleep with the amount of time that you are "alseep". I wish there was a real answer for all of us.

DEB

The graph shows data in 5 minute increments so it shows a 15 minute period of deep sleep about 11pm and a 10 minute period about 1am and on either side of the deep sleep was either light sleep or REM sleep, so it is not because I had woken up. It was 7% of my sleep, my wife's deep sleep averaged 33% for the 6 days she tested and she had a low of 19% and a high of 50%.

The Zeo is cool though. They have 2 versions. we have the one where you use an iPhone. You plug the iPhone into the wall charging it by your bed all night while the Zeo program runs. You just select the touch screen button to turn it on when you go to bed and turn it off when you get up. There is a little button on the headband that you wear during the night and just select it just before hitting the Zeo start button on the iPhone. Very easy to use. The data is then on the iPhone and already uploaded to your myZeo online account. The online account has much more information than the phone and you can print out the graphs. It has coaching help online as to how to increase your sleep but of course with RLS/WED it is not that easy.

[rthom]

I have a problem with the medication doing two conflicting things for my sleep. I take opiods and it helps with my rls which should help me get better sleep but instead my body is quieter but my mind is more awake. This is because my meds are hyping up my brain--so the worse my rls is the more meds I need but if I take more I become more alert---not condusive to a good sleep.

[majoraward]

I have a problem with the medication doing two conflicting things for my sleep. I take opiods and it helps with my rls which should help me get better sleep but instead my body is quieter but my mind is more awake. This is because my meds are hyping up my brain--so the worse my rls is the more meds I need but if I take more I become more alert---not condusive to a good sleep.

I take methadone which is an opioid, maybe it is messing me up. I also take Lyrica and Mirapex. I was on ambien for a couple of months but the doc had me quit it suddenly, I hope I am not having withdrawals from it. I just looked up Ambien withdrawals and they can include Insomnia. I don't know if it would happen from taking it for 2 months every night or not. The doctor must not have thought it would be a problem because he didn't mention it to me. I haven't taken Ambien for about a week.

[ViewsAskew]

For what it's worth, methadone is both great and not-so-great for me. In the great column is that it controls my symptoms 65-100% of the time. Many days it's 100%. Some days it's less, usually related to hormones, but sometimes who knows why. I never have a night, however, where I don't get at least 4-5 hours sleep and those are very rare.

In the not-so-great column are the following:
1. Wires me at night when I take the bulk of it - I don't want to go to bed because I feel good - better than any other time of the day.

2. Makes me want/need at lest 9 hours of sleep. If I try to get up after 6 or 7 hours (and I have no symptoms), it's like I'm drugged. If I could, I'd sleep 10-11 hours every day.

3. Makes me feel sluggish ALL day long. If I spread my dose out more, it helps reduce this, but it doesn't completely go away because I still need more at night than I do during the day.

4. Makes me forgetful. My brain just doesn't operate at 100%.

5. Removes a lot of drive. I don't care about getting things done nearly as much as when I don't take it.

[rthom]

What a crapy choice to have to make---no sleep or no wakefulness
What you said is my experience as well, and the meds make me grumpy

[rthom]

The only difference for me is that I may get some sleep, not guaranteed

[majoraward]

Night before Higher quality sleep than 13% of Zeo users, last nigh 7%

Night before 28 minutes of deep sleep (over 2 periods), last night 35 minutes (over 3 periods)
Night before Total Sleep 5 hours 52 minutes, last night 5 hours 4 minutes
Night before Wake time 59 minutes 38 last night 38 minutes
Night before Time woken 8, last night 4
Night before REM sleep 2 hours 37 minutes, 1 hour 50 minutes

I am writing my doctor! I'm watching myself sink into the muck again. It started 2 days prior to the testing with Zeo. I'm thinking I should start taking the 1/2 methadone I stopped and also start taking the Ambien every night. Ambien may not do anything for RLS but it must still my mind and allow it too sleep, I think something else is going on besides RLS/WED and Sleep Apnea. It is like my brain has forgotten how or can't sleep like a normal brain.

[majoraward]

For what it's worth, methadone is both great and not-so-great for me. In the great column is that it controls my symptoms 65-100% of the time. Many days it's 100%. Some days it's less, usually related to hormones, but sometimes who knows why. I never have a night, however, where I don't get at least 4-5 hours sleep and those are very rare.

In the not-so-great column are the following:
1. Wires me at night when I take the bulk of it - I don't want to go to bed because I feel good - better than any other time of the day.

2. Makes me want/need at lest 9 hours of sleep. If I try to get up after 6 or 7 hours (and I have no symptoms), it's like I'm drugged. If I could, I'd sleep 10-11 hours every day.

3. Makes me feel sluggish ALL day long. If I spread my dose out more, it helps reduce this, but it doesn't completely go away because I still need more at night than I do during the day.

4. Makes me forgetful. My brain just doesn't operate at 100%.

5. Removes a lot of drive. I don't care about getting things done nearly as much as when I don't take it.

Do you take only Methadone?
1. I don't think Methadone wires me, I take it every 8 hours so it stays about the same.
2. I always feel drugged but I try to ignore it, taking 1/2 of methadone in morning has helped at work though.
3. Sluggish all day - yes, except 1/2 dose of methadone in morning helps me. Mirapex and Lyrica at night is my "more at night".
4. What was i going to say?
5.

[ViewsAskew]

I usually only take methadone - 20 to 25 mg spread out through the day. Sometimes I take trazedone to help with sleep. It makes me even more groggy, however, so I don't use it regularly.

You're lucky it doesn't wire you! It's really annoying to be wide awake as the clock ticks later and later! I'm relatively sure my clock is long to begin with, so I always want to stay up late. When I take this, I can easily get to the point I'm going to be at 6, 7, 8 AM. I have to fight it every day to keep it between 2 and 4 AM. I was back to 5 or 6 AM last week and have been slowly pulling it back - went to sleep at 4:30 this morning.

[majoraward]

I usually only take methadone - 20 to 25 mg spread out through the day. Sometimes I take trazedone to help with sleep. It makes me even more groggy, however, so I don't use it regularly.

You're lucky it doesn't wire you! It's really annoying to be wide awake as the clock ticks later and later! I'm relatively sure my clock is long to begin with, so I always want to stay up late. When I take this, I can easily get to the point I'm going to be at 6, 7, 8 AM. I have to fight it every day to keep it between 2 and 4 AM. I was back to 5 or 6 AM last week and have been slowly pulling it back - went to sleep at 4:30 this morning.

I was taking 5mg methadone 3 times a day but now 12 1/2 mg a day. Actually I don't know that it doesn't wire me, what I do know is Mirapex practically knocks me out so it probably just overides the methadone. They Lyrica also helps me to sleep. I am now taking it at 8:30 pm, all 3, and within an hour of taking it I will fall asleep with laptop on my lap. It is pretty strange how it suddenly hits me, I never know it is going to happen, I just wake up. I then take off for bed.

Ouch. Sounds like you need something like Mirapex, Lyrica, Ambien, Oyxcodone or a combination of all of them or some of them at night to knock you out but I suppose you have tried them. When I was up for several years my favorite time to pretend that I was sleeping was between midnight and 2 AM, probably just because it is the most boring time of the 24 hours. I would go and lay down in the spare bedroom for a few minutes if I could and then when I got up I would think that a new day had started. I like seeing the sun go down and the sun come up but not sleep while the sun is up.

I have had 4 bad days of sleep in a row...