Riding the Big One (RLS 24/7, Hanging Ten)

For everything and anything else not covered in the other RLS sections.
debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by debbluebird »

EeFall wrote: I don’t understand what you are saying about Kratom? Kratom actually helped my RLS years ago but as the years went by my RLS became worse and Kratom didn’t help for it but still helps for depression. I was hoping that if my RLS has gotten better maybe I could end up only taking Kratom.
I'm hoping that your RLS has gotten better. I think it's a good experiment. I hope you can decrease the Buprenorphine. You never know unless you try.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

QyX wrote:
Basically, as long as you take Buprenorphine, you won't be able to determine how effective Kratom will be for RLS.
I see what you mean. Since taking Buprenorphine I no longer get what I would call a high from Kratom but for some reason it makes a bad day good for me. I wonder if there isn’t something else going on with Kratom that gets me from being gloomy to just feeling normal. I won’t take any Kratom while reducing Buprenorphine though unless I absolutely have too.

I am taking 1/4 mg less now and in 2 days will be 3/8 mg less, so far it is working.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

debbluebird wrote:
I'm hoping that your RLS has gotten better. I think it's a good experiment. I hope you can decrease the Buprenorphine. You never know unless you try.
I think I got the idea from you years ago to try to get off meds once in awhile to see if RLS has gone away by itself. So far so good.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by debbluebird »

Very good.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

I can't hardly believe it but I slept about 7.5 hours last night despite lowing my Buprenorphine by 3/8 mg. Total normal dose is 4 mg. In 2 days I will be starting at 3.5 mg per day. I am trying to keep positive in the hope that RLS has gone away. I am looking forward to a day when I am down to no meds for a few days and know that RLS is gone. It would be like waking up from a very bad dream. Dang, but if I'm not a realist also :lol: but stranger things have happened (like this is my 1500th post).

QyX

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by QyX »

I somehow can almost always feel that my RLS is there. There is no need for me to stop all meds and wait and see if my RLS still there. If I delay taking my meds for too long, I will experience quite severe RLS symptoms way before I experience any relevant withdrawal symptoms from stopping my meds.

With what you are doing right now, you really need to take into account the the unique pharmacodynamic properties of Buprenorphine. You should at least take 7 days between each step in the reduction of Buprenorphine because with the way Buprenorphine binds to the receptors, it ta kes more time to see what a dose adjustment does compared to the classic morphine like opioids. Even addicts, who are on a high enough dose of Buprenorphine can easily skip a day and often even two days without noticing any relevant withdrawal symptoms.

I highly recommend reading up on the unique properties of Buprenorphine, so that you can better understand and interpret the results you are getting.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

Because I am naturally hyperactive and restless the only way I can know for sure that I do still have RLS is if I find I can’t sit down at all. I am now at 3.5 mg rather than 4 mg and still okay but a few years ago I got down to 2 or 2.5 mg until I couldn’t sit or stop moving. I did lower much faster that time but the “feeling” of having to move was severe. Went back to 3 and finally 4 mg as it seemed 3 did not always work.

Last night I did have a few very realistic nightmares which I haven’t had for a long while which worries me a bit but all I can do is stick with plan which will take 27 weeks to get off
meds.

QyX

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by QyX »

So just so I understand it correct: when you are on your normal dose, you don't experience any RLS symptoms?

I can almost always feel, that something is terribly wrong with my legs.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

QyX wrote:So just so I understand it correct: when you are on your normal dose, you don't experience any RLS symptoms?

I can almost always feel, that something is terribly wrong with my legs.
Yes, since starting on Suboxone about 7 years ago it takes away my RLS feeling. I had to experiment though on dosage because taking all 4 mg at once makes me hyper so I don’t sleep. I take it at 9:30 am, noon, 5:30 pm and 8 pm. I am now taking generic which is about 1/2 the cost.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

So my experiment is over, I give up. I am down to taking 3/4 mg less a day of the 4 mg of Buprenorphine that I usually take and I am up after a restless sleep at midnight with the full symptoms of my RLS back. I just took about 1 mg of Suboxone (generic) and hopefully I will be able to go back to bed again later on.

I had to try and I know now that I could probably be able to take 3.5 mg rather than 4 mg but I think I will just go back to 4 mg and continue to hope it keeps working.

The scary thing is the times over the last 20 years that my meds would no longer work at all and I was a walking zombie. I am fortunate that Suboxone has worked for the last 7 years or so. I hope it continues to work, but hope mostly for a cure someday for RLS for everyone.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by badnights »

hope mostly for a cure someday for RLS for everyone.
Ditto.
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.

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

badnights wrote:
hope mostly for a cure someday for RLS for everyone.
Ditto.
I did decide to continue taking 3.5 mg a day instead of the 4 mg. It actually seems that I sleep better and feel better taking only 3.5 mg. It is amazing how a little less makes me feel more normal so I guess something good did come from the experiment. :D

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by ViewsAskew »

EeFall wrote:
badnights wrote:
hope mostly for a cure someday for RLS for everyone.
Ditto.
I did decide to continue taking 3.5 mg a day instead of the 4 mg. It actually seems that I sleep better and feel better taking only 3.5 mg. It is amazing how a little less makes me feel more normal so I guess something good did come from the experiment. :D
YAY!
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.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by debbluebird »

Very good !

EeFall
Posts: 1557
Joined: Thu Jan 03, 2013 4:11 am
Location: Washington State, USA

Re: Riding the Big One (RLS 24/7, Hanging Ten)

Post by EeFall »

I ended up having to take the original 4mg of buprenorphine. Now if I could just remember to take it on time 4 times a day. Last night I took my 5:30 pm and 8 pm about 10 pm. What this did is I laid in bed a few hours reading then had to get up from RLS and here I sit about 3:30 am. Actually it is because I took too much all at once and buprenorphine makes me hyper if I take too much of it which feels like RLS but probably isn't really but if it feels the same it all comes from the same problem. :lol:

Also something happened a few days ago. This lady that we don't really know who lives by us apparently had brain surgery last year and they screwed it up. She has to take meds for it (which she either decides she won't take or doesn't remember to take) and she goes absolutely insane. I heard someone screaming around 5 am and looked outside and she was on her porch just screaming. I woke my wife and by the time she came to see she was back in the house. So then my wife and I are sitting in living room around 7 am and she is screaming and pounding on our door. This happened to another neighbor a month ago and were warned not to open door. By then my wife calls 911 emergency and she goes around to back of the house screaming and pounding on our french doors and a window with an old medal teapot we have sitting out there for decoration. It even scared the 911 operator as she could hear her screaming and trying to break in. So the police and fire department come and take her to mental hospital and I think she is there now. Today I was working outside and noticed that she also threw a 10 pound rock at our bedroom window! The last time I saw someone so crazy was watching The Exorcist movie years ago but this was real. So the next night we hear someone out in the living room around midnight and dang if it wasn't our robot vacuum cleaner turning itself on. This also happened the next night too even though I did what directions said to do to delete the robot schedule which we must have accidentally setup. After that I turned the robot vacuum off completely for a day and replaced the remote batteries and now it is okay again. This whole experience has really freaked us out. Yikes. :oops: The thing about the robot vacuum is we have had it a few years with no problems and it waits to start itself up the night after the woman goes wacko. What timing.

Post Reply