sleep issues

Anything on your mind that isn't about WED/RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
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Rubyslipper
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Postby Rubyslipper » Thu Aug 18, 2011 10:51 pm

I really hope that the meds will continue to work for you and that they don't make anything else worse. I don't take anything for the fibro as most of the time I can function okay. Right now I am just really run down from the wedding and some other things. It gets harder and harder to bounce back! Usually the groom's mother isn't as involved in wedding prep as the bride's but in any case, make sure you take care of YOU during this time. I didn't and am paying for it now.

Thanks for the compliment!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Postby Polar Bear » Thu Aug 18, 2011 11:04 pm

No, as the groom's family we won't be as involved in the actual wedding preparations. However none of our boys keep it simple!! Last wedding was 5 years ago in NW Canada in February and 6 of us travelled from N.Ireland.

This wedding is in England so one day travel will get us there and stay a few days, but also then our son and wife in Oregon USA will be travelling over and of course its very difficult for me to keep my nose out of things and quit checking that their arrangements are sorted, etc. etc. etc. Even on phone or email I can visualise the 'glazed over eyes' as Ma goes on, and on, and on...

Repeat to myself::::
I must stay out of it
I must stay out of it
I must stay out of it.
Betty
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Rubyslipper
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Postby Rubyslipper » Fri Aug 19, 2011 11:56 am

Stay out of it??!! I would have loved to have the groom's mother or stepmother help out! There is a fine line between "helping" and "being a pain" though. So you are from N. Ireland?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Postby Polar Bear » Fri Aug 19, 2011 6:15 pm

Yep. From County Antrim in Northern Ireland.
Betty
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Rubyslipper
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Postby Rubyslipper » Fri Aug 19, 2011 6:28 pm

My daughter that just got married did a study abroard in Ireland during college. It's a place I have always dreamed of visiting. Some of my very distant relatives came from there. They were Dougherty's (now Dority's).
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Postby Polar Bear » Fri Aug 19, 2011 7:19 pm

If you ever make it...... there will be a welcome :)
Betty
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Rubyslipper
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Postby Rubyslipper » Fri Aug 19, 2011 7:44 pm

That is truly nice to know. Thanks!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Postby ViewsAskew » Fri Aug 19, 2011 11:26 pm

Ah, Road Trip! Well, OK, Plane Trip for many of us, but I think we should all arrange to visit Polar Bear. Wouldn't that be fun?

Of course, I need to win the lottery first :?
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Postby Polar Bear » Sat Aug 20, 2011 12:15 am

Two spare bedrooms, after that its the sofa, two reclining chairs, then we're reduced to airbeds on the floor. First come, first served :)
Betty
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Rubyslipper
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Postby Rubyslipper » Sat Aug 20, 2011 12:20 am

Oh that we could make that trip!! Maybe someday. I have actually traveled to meet some good friends i have made through this disorder.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Postby Polar Bear » Wed Aug 24, 2011 6:57 am

Since the Amitryptiline was increased to 20mg I have been sleeping a bit better. I think this might still be quite a low dosage but I've been going slowly in case of any effect on WED symptoms. Been on it about 6 weeks first at 10mg and now one week at 20mg.

Sleep is better, I've been averaging 6 - 7 hours with perhaps a couple of minor awakenings. Two nights ago I slept 8 hours (total). It is fortunate that being retired there is no pressure of a clock watch for work.

For many years my symptoms have been 24/7 and I take a .5 requip in the middle of the night. However these last two mornings I've awakened at around 6am with minor leg symptoms. This usually only happens when I haven't taken my med during the night.

This leads me to think:
This is not unheard of and is it just a coincidence that it has happened twice after increasing to 20mg amitry....(and also upped from 10mg to 20mg citalopram which is an AD).
Or..... altho I've been taking the citalopram for a year and the amitry.... for about 6 weeks, has the increase now filled the bucket so to speak. And will I need to increase my medication taken at 3am.

One thing does come to mind............. some folks say that WED does not occur whilst asleep. I don't believe this, I believe that when it does happen (for whatever reason) that it awakens me, and does not just occur the split second that I awaken.
Betty
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xristina47
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Postby xristina47 » Wed Aug 24, 2011 7:30 am

Re. your last point, Polar Bear - in my case, I think it is more PLM (legs that jerk) that wakes me up at night. Maybe we have to differentiate between PLM and the electric-type, buzzy sensations in the arms and legs that characterise WED. Maybe these latter DON’T wake us up because maybe they only occur while we’re awake. It’s puzzling, isn’t it? I suppose that knowing the answer is quite important because it could help in selecting medication that affords us a reasonable night’s sleep.

Chipmunk
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Postby Chipmunk » Wed Aug 24, 2011 6:02 pm

The two MUST be closely related, if not the same thing. When my buzzing, electric feeling is strong then I know I will not get a good night's sleep. When my legs are quiet then I sleep well.

I do notice that if I don't move my legs in the evening they will eventually jerk by themselves like the electricity has built up and needs a static discharge - ZAP! I wonder if the PLMs are because we are asleep and therefore can't mitigate the electric build-up by moving.

This makes sense to me because I have the most PLMs during REM sleep - when my body is paralyzed and therefore the most unable to move to dissipate the build-up.
Tracy

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ViewsAskew
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Postby ViewsAskew » Wed Aug 24, 2011 7:21 pm

the PLMs were what I went to get help for originally - not the RLS. Now both are equally annoying.

No matter what the experts say, PLMS and RLS both occur while I'm sleeping. The difference is this (in my body):

1. The awakening from a PLM is momentary; I moan (says hubby), move/roll over, and go back to sleep. I do this many times per hour.

2. The WED/RLS starts while I'm asleep and it brings me out of even Stage 3 or 4 deep sleep. I fight it because I'm darn tired, but it's in my sleeping consciousness that it's happening. Eventually - not sure how long but no more than a few minutes - I am forced to awaken completely, eyes open, annoyed, with WED going strong. I have to get out of bed.

This leads me to believe that when they say that WED only occurs when awake, what they really they mean is that there is NO way our bodies can stay asleep with it happening. - we MUST be awake when it's active, eve if it started while we were sleeping. I can stay asleep (poor sleep that it is) when I have PLMs.
Ann - Take what you need, leave the rest



Managing Your RLS



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Polar Bear
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Postby Polar Bear » Wed Aug 24, 2011 9:54 pm

This leads me to believe that when they say that WED only occurs when awake, what they really they mean is that there is NO way our bodies can stay asleep with it happening. - we MUST be awake when it's active, eve if it started while we were sleeping.

Exactly right.
Betty
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