What Severe RLS is Like

For everything and anything else not covered in the other RLS/WED sections.
EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sun Aug 27, 2017 12:32 pm

At 10:30 pm I got up and took my 1/2 mg & and an extra 1/2 mg because I couldn't stop moving so I took 3 1/2 mg. 7 hours sleep though. I guess I will try to take 3 mg each night and if it doesn't work I will take more. It made me really itchy though, dang it. Maybe I will take more of my normal dose early in day.

debbluebird
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Re: What Severe RLS is Like

Postby debbluebird » Mon Aug 28, 2017 8:34 am

debbluebird wrote:Some doctors have discount rates when you don't have insurance.


It is also true with prescriptions, some pharmacies have a lower price with certain drugs without insurance. I didn't have insurance for two years before Medicare kicked in.
I wish you would try and add a different drug from your stash, just to see if it would help. I imagine you would like to get off what you are taking and take something else. It seems you would need to add something else even if you only get down to 2 mg with what you are on, just to control the bad periods. The other drugs have been out of your system a long time. Probably alternating so you don't augment.
We feel your pain.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Mon Aug 28, 2017 8:49 pm

debbluebird wrote:
debbluebird wrote:Some doctors have discount rates when you don't have insurance.


It is also true with prescriptions, some pharmacies have a lower price with certain drugs without insurance. I didn't have insurance for two years before Medicare kicked in.
I wish you would try and add a different drug from your stash, just to see if it would help. I imagine you would like to get off what you are taking and take something else. It seems you would need to add something else even if you only get down to 2 mg with what you are on, just to control the bad periods. The other drugs have been out of your system a long time. Probably alternating so you don't augment.
We feel your pain.


Thanks I may do that. I tried the Wild Lettuce 20 minutes ago, maybe it will help :D

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Fri Sep 01, 2017 5:40 pm

8 hours 13 minutes sleep last night and at 3 mg Suboxone. Awesome. I have another few days at 3 mg and will try 2 1/2 mg. I am taking my 12.30 pm dose at 5:30 pm the past few days and taking last dose just before bed, rather than late at night, so that more of it is there when I need it to sleep.

I stopped taking 4 mg at bedtime years ago cause of hyperalertness but maybe I will eventually take 2 mg just at bedtime as it may not cause hyperalertness at the smaller dose. That would be so awesome as I would not have to cut the sublingual film anymore and save cost.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Sat Sep 02, 2017 5:24 pm

Was this sleep all in one session, or did you have fractured sleep?
Either way - congratulations !!
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sun Sep 03, 2017 1:34 pm

Polar Bear wrote:Was this sleep all in one session, or did you have fractured sleep?
Either way - congratulations !!


It was with 14 times awakening but the Fitbit has shown me that I sometimes wake up 30 times a night. It also tells me I was awake 1 hour and 2 minutes but the 8 hours and 13 minutes was on top of that.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Sun Sep 03, 2017 1:43 pm

I started 2 1/2 mg of suboxone with going to bed dose last night. Took 1/4 mg rather than 1/2 and even that less had me reading until midnight. Took 1.6 ml of wild lettuce and got about 6 hours sleep which is ok.

My subconscious was playing tricks on me and had me cutting dose to 3 mg again but I eventually realized it was incorrect. Had my wife verify it. Pretty scary that ones own mind can play a trick like that. I hope it works out for the next week. I should be on 2 1/2 mg for 8 days then go to 2 mg. I hope it works.

Polar Bear
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Re: What Severe RLS is Like

Postby Polar Bear » Sun Sep 03, 2017 2:31 pm

So it was 8 hours + , plus wake ups. It was certainly fractured.
But very happy for you that you can achieve this.

I'm feeling that I'm on shift work - 2 hours (approx) on/2 hours off !!

Good luck over the next week.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Mon Sep 04, 2017 1:23 pm

Polar Bear wrote:So it was 8 hours + , plus wake ups. It was certainly fractured.
But very happy for you that you can achieve this.

I'm feeling that I'm on shift work - 2 hours (approx) on/2 hours off !!

Good luck over the next week.


2 hours on and off yikes. Most of the awakenings I am not aware of them. It is getting worse though as last night 6 hours 22 min asleep and numerous times awake, feeling tired and just got up, this may not work but I will still try for awhile. Maybe 3 mg will be the lowest which would still be better than 4 mg.

Wishing you better sleep.

stjohnh
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Re: What Severe RLS is Like

Postby stjohnh » Mon Sep 04, 2017 2:13 pm

I spent several months about a year ago investigating different ways of monitoring sleep and coordinating the results of various sleep monitoring devices with how I felt the next day. I also I checked into sleep physiology a fair amount. I found that while I got a reasonable number of hours of sleep that I continued to feel tired and run-down and out of sorts the next day and that the days that the devices showed I had better sleep did not correlate with the days I felt better. Deep sleep is something that remains elusive to me and is needed to feel refreshed. None of the sleep monitoring systems I tried showed any reasonable correlation with their measurement of deep sleep and how I felt either.
Blessings,
Holland

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Tue Sep 05, 2017 6:51 pm

Another not so good night. At least there was no real RLS problems other than waking up often. I think by body may not like taking less Suboxone at the moment. Perhaps now that I have been below 4 mg for awhile all the reserves have left my system and the body just doesn't like it. Yesterday 2 1/2 mg, I am pretty exhausted.

It does not help that it is actually snowing (falling) ash out of the sky. Looks a little like a volcano has exploded around here, soot is all over everything outside and also suppose to be 96f today. The sky is bleak with smoke and haze from I guess hundreds of forest fires in several states and Canada. We have a strange wind where we are getting it from many directions. I can look out the window and actually see it falling much larger than dust but smaller than the tiniest of snowflakes. Last week I cleaned the skylight in the kitchen from the roof, getting really dirty after a year. Bad timing as now covered with ash and will have to do it again when the fires stop.

ViewsAskew
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Re: What Severe RLS is Like

Postby ViewsAskew » Tue Sep 05, 2017 6:58 pm

:-(
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
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Re: What Severe RLS is Like

Postby EeFall » Wed Sep 06, 2017 6:34 pm

ViewsAskew wrote::-(


Only 5 hours sleep last night but an hour of REM and an hour of Deep Sleep so feel pretty good. :lol:

badnights
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Re: What Severe RLS is Like

Postby badnights » Thu Sep 07, 2017 4:30 am

A whole hour of deep! I don't know if I ever get that. Broken or solid?
Beth - Wishing you all restful sleep tonight
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EeFall
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Location: USA

Re: What Severe RLS is Like

Postby EeFall » Thu Sep 07, 2017 3:44 pm

badnights wrote:A whole hour of deep! I don't know if I ever get that. Broken or solid?


Solid hour deep. 5 1/2 hours last night 1/2 hour of REM & 1/2 deep, sleepy but had to get up at 5 am. Started taking allergy pills again a few days ago may be because of them. Will stop using them again.


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