Hello.....am still here

For everything and anything else not covered in the other WED/RLS sections.
rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Sun Jan 27, 2013 3:35 pm

that is true too but i had very little of that if any knowing it now though, as bad as the WED got, the codine would not have done much anyway.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Sun Jan 27, 2013 5:36 pm

rthom: Boy, your post sounded like I wrote it. I hated night time. I would almost get an anxiety attack, because I knew what was going to happen, just like you said, I would cry, walk the floor, watch the clock praying for the night to be over. Now after many many years of that I have my days and nights messed up. Now that I take Mirapex the WED/RLS is mostly better. But my sleep habits are crazy. When the WED/RLS was really bad, I always said "I went to sleep when the birds sang", that was about 5 am and I could fall a sleep for a couple hours. Now I still am messed up, I sleep a couple hours at a time. (side effect of Mirapex is insomnia, weird) And now I have arthritis so bad I can hardly go up or down steps and I am in pain most o the time. And again, no one realizes how much pain I am in. I feel like I am all alone in the world,except for you all here n rls.org. At least I know that you all unerstandd.

Thank you friends.
BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Re: Hello.....am still here

Postby moonlight » Wed Jan 30, 2013 5:31 pm

Polar bear if you think med are causing even slight tinnitus advice would be come off them as it will make it worse and the longer your on meds that cause it , it does not reverse!. I am sad am off the codeine as it did help the rls /wed , am just waiting for the hell to start up big time again , thats when the rls ,trapped nerve in my leg and tinnitus all become unbearable at the one time.....haven't figured out a solution for that one but i know i wont be sleeping.

I tried an experiment with my anxiety meds and found if I increased them and take one before bed It calms me enough not to focus on the tinnitus and also only have vivid dreams instead of nightmares every night......so a positive me thinks, haven't told m gp what am doing ,but my key worker at the day hospital {who is also a psych nurse} said its ok to do that. so far five nights no nightmares and no focusing only broken sleep.....even the rls isn't too bad.

rthom..yes antihistamines are a deffo no no make the rls go into orbit and for me any form of sweeteners
sleep is not only a dream

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Wed Jan 30, 2013 5:45 pm

I can vouch for that tinnitus not reversing--I never used to have trouble with codine--once it acted up that one time it's been a problem ever since. It just will not improve, and that was about 20 yrs ago-

Polar Bear
Moderator
Posts: 7527
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello.....am still here

Postby Polar Bear » Wed Jan 30, 2013 9:16 pm

Thanks for your views regarding opiates/codeine and tinnitis.
The occasional 'ringing' is slight, and definitely occasional. I would be turning my head to see/hear if it is on the tv and sometimes I wonder if I actually hear it or not.

However, my WED in all 4 limbs is 24/7 and this is the best control that I have ever known.
I also use Tramadal as well as Codeine. Tramadol is regular, codeine is more on an 'as needed' basis. Always one codeine at night, or perhaps if I was going to the movies, theatre or out to dinner.
At present a change of medication would be like taking away my lifeline.
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

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Re: Hello.....am still here

Postby moonlight » Wed Jan 30, 2013 10:28 pm

Polar bear don't mean to be scarey but tramadol is also oxotoxic , it causes tinnitus and deafness, just like codeine,
but as you say the good out weighs the bad and at the moment your having the best control.
I hope it stays good for you.
sleep is not only a dream

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Thu Jan 31, 2013 12:05 pm

Glad you are getting relief, PB. I can't even imagine having WED in all 4 limbs. I almost lost my mind with it in my legs. A shame we have to chose between WED or tinnitus or deafness but I would chose anything other than WED. Wish you the best.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
Moderator
Posts: 7527
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello.....am still here

Postby Polar Bear » Thu Jan 31, 2013 8:37 pm

Thanks Betty...
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

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Sat Feb 02, 2013 4:54 pm

I still use codine when needed as well, you gotta do what you need to get through. Hope it works well for you forever if need be PB 8) :mrgreen:

Polar Bear
Moderator
Posts: 7527
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello.....am still here

Postby Polar Bear » Sat Feb 02, 2013 8:01 pm

:thumbup: :thumbup:
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


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