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

For everything and anything else not covered in the other WED/RLS sections.
debbluebird
Posts: 2093
Joined: Mon May 21, 2012 3:27 pm

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

Postby debbluebird » Sun Jan 12, 2020 6:49 pm

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: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Tue Jan 14, 2020 10:11 pm

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: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Tue Jan 14, 2020 10:15 pm

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: 2093
Joined: Mon May 21, 2012 3:27 pm

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

Postby debbluebird » Fri Jan 17, 2020 6:05 am

Very good.

EeFall
Posts: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Fri Jan 17, 2020 8:50 pm

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
Posts: 618
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

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

Postby QyX » Sun Jan 19, 2020 5:29 pm

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: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Mon Jan 20, 2020 6:24 pm

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
Posts: 618
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

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

Postby QyX » Tue Jan 21, 2020 8:25 pm

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: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Thu Jan 23, 2020 7:54 am

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: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Sat Feb 01, 2020 8:43 am

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: 5406
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

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

Postby badnights » Sat Feb 01, 2020 9:17 am

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: 1504
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

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

Postby EeFall » Mon Feb 03, 2020 4:54 pm

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: 15912
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

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

Postby ViewsAskew » Sun Feb 09, 2020 12:01 am

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: 2093
Joined: Mon May 21, 2012 3:27 pm

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

Postby debbluebird » Sun Feb 09, 2020 4:05 pm

Very good !


Return to “General Topics: RLS/WED”

Who is online

Users browsing this forum: No registered users and 1 guest