Attempting to get off Ropinirole - again

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Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

I got caught out again. Having typed an update on my present sleep position which took forever because I am so sleep deprived and confused.....I eventually fell asleep, face filling the keyboard.
I then timed out and lost entire [screed] story.
Only blessing is I think avoided drooling on the keyboard. Slept for over an hour.

I should have done it as a word document first.
Will have to leave it now as I'm beyond being capable of making sense. It's 5.30 am and this is my second sleepless night.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: Attempting to get off Ropinirole - again

Post by badnights »

Why are things so bad, Betty? What's going on?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Beth, I'm either unable to sleep, or I keep falling asleep. This is the fourth attempt at writing this post. Each attempt I've fallen asleep and then found myself timed out.

But more disappointing, my rls which has been so well controlled has started to bother me again at night. These last 4 nights I've been taking 2 teaspoons of kratom which he!ps eventually. I have started a new med Clodiperol blood thinning so unsure if that's relevant. However I must take it. A brain mri has shown ischemic changes.

My neurologist has referred my to a respiratory consultant to see if I have sleep apnea but it's likely to take a while for an appointment what with C19.
Sorry if some of this has been repetitive. I've probably mentioned some of it before.
My days and nights have become a mixed up circle of trying to sleep and trying not to fall asleep inappropriately.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: Attempting to get off Ropinirole - again

Post by badnights »

Oh no, that's not good! And the stress of physical distancing has to be making things worse. Can you take the kratom earlier? Or twice?

Is that the only thing you take now for the WED/RLS? Seems like it wouldn;t be enough.

You hang in there, ok? These are bad times for you, but you've been through bad times before and you can figure out how to get thru these times. Accept that you need sleep so badly that you must take it whenever your body offers it - even if it's with your head on the keyboard! But try to predict it and get somewhere more comfy first ...

And tell hubby and friends not to dare wake you up when you nap in the day! If you feel it coming on, don't delay, immediately turn your phone off and go seclude yourself on a couch or in a bed. If you wait - sometimes only half an hour - the window will close; then when you lie down, the symptoms force you up. So take it as soon as it's offered.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Beth, I use Codeine and Pregabalin. The Kratom is an extra and I don't use it every night. Because of not wanting to overuse it or get accustomed to it I didn't consider taking it twice. That's a thought.

No, hubby wouldn't dream of waking me when I fall asleep. I had a lovely one hour nap on the couch today at lunchtime, 4 hours ago. Definitely agree that there is a 'window' where the moment can pass. :D
Betty
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ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

So sorry I missed this. Nice to know you had a bit of a nap today. Doesn't seem like nearly enough, though. Hope you find out what is causing it.
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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

As suggested by Beth I tried taking the kratom twice. At 9pm and at 1am. Unfortunately it didn't make any difference and these last few nights I've been getting only a couple of hours max. Last night was one hour.
So washing is out on the line. I'm in some sort of a spaced out fog. And my husband is still snoring at 11am. Such envy !!

Yesterday I contacted the private clinic asking what is the position regarding my referred sleep/respiratory appointment of a month ago. Clerk said no referred letter appeared to have been received, (even tho I have a copy of it). She will check on Monday and revert. .....'silent scream'....... I'll give it until Tuesday and if no contact will keep chasing. If there are no appointments at present due to C19...at least let me know....
Betty
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Rustsmith
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Re: Attempting to get off Ropinirole - again

Post by Rustsmith »

PB, I hope they find your referral and can get you scheduled quickly.

My doctor ordered a sleep study in late February. When I called the office to book it, the first opening that they had was April 20. With everything that isn't essential shut down by Covid, that appointment was cancelled and I was rescheduled for June. I am currently getting enough hours of sleep, but it appears that it is so shallow and broken that I am not rested and am barely functional. I already sleep with a CPAP machine and it is telling me that my move to a higher altitude last January (6000 ft) has increased my breathing problems. When you factor in the effects on breathing caused by taking an opioid for RLS, it is no wonder that we have more problems than others.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

badnights
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Re: Attempting to get off Ropinirole - again

Post by badnights »

I hope you can get this figured out soon xoxoxoxoxoxoxoxoxoxoxoxo
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

I should have contact with the private clinic in the next couple of days and know where we stand in that regard.
Last night/this morning was again only 1.75 hours' sleep. 4am to 5.45am. Amazing how awake and active I am.
And to top it all my car had (and still has) a flat battery this morning.
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

Yankiwi
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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

Betty, your car has gone out in sympathy with you and your flat battery. One and three-quarter hours of sleep is hell.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Yankiwi wrote:Betty, your car has gone out in sympathy with you and your flat battery. One and three-quarter hours of sleep is hell.
Or it is telling her that however functional she feels, 1 3/4 hour sleep is simply not enough to be driving!
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.

Polar Bear
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Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Indeed. I should not have considered driving. Car battery has now been charged and my husband took it for a short run. My own battery got two short 1.5 hours’ charge last night. We’ll take the car for a longer drive today and he can drive.

Yes. It was bad judgment for me to have considered driving.
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

Yankiwi
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Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

Driving while being seriously sleep deprived is more dangerous than driving drunk. I'm glad you decided not to.

ViewsAskew
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Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Yankiwi wrote:Driving while being seriously sleep deprived is more dangerous than driving drunk. I'm glad you decided not to.
Me, too! I care about Betty too much!
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.

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