Infusion Update

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Mon Feb 06, 2017 9:13 pm

Well, so much for goals, lol. I did get the methadone on time - late on the pramipexole (but I'm trying to move my bed time from 7 AM back to something reasonable, which is always hard), so late on the second methadone. I was asleep by 5 AM, which is the same as the last two days. Need to get it to 4 AM tonight if possible.

I took up an extra 2.5 mg methadone, but didn't take it, so I think I took just 5 mg along with the pramipexole. I think I had a bit more pramipexole because the piece broke in such a small amount I had to take a bit more. The only way I could get this dose right is to compound it.

I seem to have a bit of what I call pre-rls today, only a couple hours after I awakened. Hmmm. Hoping it's just because I'm falling asleep as I type.

Ah, the never-ending augmentation loop. Hard to see when it's incremental instead of exponential.
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.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Tue Feb 07, 2017 10:40 pm

So, definitely need a little bit more now that the methadone is leaving my system, but not a lot more. Using 5 to 7.5 methadone each night with a teensy section pramipexole. I am pretty sure I took 5 mg last night and had symptoms several times through the night - was able to to bed gymnastics each time and get back to sleep. While I'd rather sleep through the night, I also know how easily I become tolerant and want to keep this low.

Still contemplating stopping it all...
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: Infusion Update

Postby Polar Bear » Wed Feb 08, 2017 9:22 am

Ann, you are very brave - and determined. I applaud you :clap:
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

legsbestill
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Re: Infusion Update

Postby legsbestill » Wed Feb 08, 2017 6:31 pm

Wow; that's exciting. It is starting to look like a genuine improvement. Are you thinking that stopping it all would enable you to form a clearer picture of your base line? ... or ... ?

Have you stopped kratom?

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Wed Feb 08, 2017 8:55 pm

Am thinking stopping would give me a true baseline. It might also wash out any effects from meds. We really have no idea what taking these does. I doubt it, but it could cause something to change which keeps the RLS hyper, for lack of a better word.

Of course, last night wasn't so fun. I knew that the residual methadone would affect dosing and I may have misjudged by how much. I also was late taking meds, so not sure how much was that. Total meds last night: .03 pramipexole, 10 mg methadone. Still LOADS lower...but not as low as I'd hope. Am thinking of trying .06 pramipexole with 5 to 7.5 methadone tonight to see what happens.

And, yes, still using the kratom. It's the only way (or MM) that I can get to sleep with the methadone alerting.
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.

legsbestill
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Re: Infusion Update

Postby legsbestill » Fri Feb 10, 2017 12:26 am

I asked about your motivation for stopping meds because it is something I seem driven to strive towards also - for much the same reasons. My symptoms are not as severe as yours which helps of course.
It is a really nice feeling even to reduce meds. I applaud you for your constant experimentation. I hope the different ratio (pramipexole to methadone) reveals ... something good.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Fri Feb 10, 2017 12:56 am

So, had to increase a bit more. Still much lower, but I'd be happier if it would stabilize soon! Needed 10 mg methadone and .04 or .05 pramipexole (piece broke off much smaller than the other side, lol, so am guessing). Went to sleep with 7.5 mg and awoke with symptoms after 1.5 hours. Could've just tried a bit of walking or something and then back, but I was tired and just took the other 2.5 of methadone and 1 mg kratom. Slept 3 more hours, did some gymnastics in bad, then got about 3 more hours. Am pretty functional today. The darn "songs in my head" are back from the pramipexole, one side effect I should just ignore, but I get so tired of hearing the same song ALL the time for days. Especially because I usually dislike the song!

Thanks, legsbe still. I think I'd have to jump if I felt there was no other option. I am just not wired that way. I guess being a bit Type A, but mostly just curious, helps me both in keeping my spirits up and finding new solutions.
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.

legsbestill
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Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Fri Feb 10, 2017 4:52 am

Yes; I think curiosity is a strong motivating factor for me too. I really want to go up every alleyway and see where it leads.

In my head my rls seems something like a fully formed foe - it looks a bit like the Balrog in the Lord of the Rings film (as in 'YOU SHALL NOT PASS') and my body (temple) is a battleground in which the struggle between me and it is waged. The rls twists and turns and finds ever new ways to circumvent my strategies. Each new tactic I embark on is an attempt to stay one step ahead of it. And of course what use is a battle if one does not consider that there is a prospect of victory - however remote.

And that's enough metaphors for 4.50 am.

ViewsAskew
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Re: Infusion Update

Postby ViewsAskew » Fri Feb 10, 2017 10:21 am

That you can think of metaphors at 4:50 AM - that is impressive!
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.

legsbestill
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Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Fri Feb 10, 2017 9:27 pm

Can't seem to manage emojis but please imagine blushing but quietly chuffed one

Polar Bear
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Re: Infusion Update

Postby Polar Bear » Fri Feb 10, 2017 9:56 pm

To use an emoji - After typing a response, look at the bottom, at the box beside 'Submit' where it says 'Full Editor & Preview'. Click this and it will open up giving youa selection of emojis.
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

legsbestill
Posts: 299
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Fri Feb 10, 2017 10:59 pm

:roll:

I actually got that far but it wouldn't transfer onto the screen - just a written description of the emoji (see above)

legsbestill
Posts: 299
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Location: Dublin Ireland

Re: Infusion Update

Postby legsbestill » Fri Feb 10, 2017 11:02 pm

Oh ... Now it is an emoji - before I pressed submit it was a piece of text.

Rustsmith
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Re: Infusion Update

Postby Rustsmith » Fri Feb 10, 2017 11:54 pm

You probably figured this out, but what you saw was the "computer code" for the emoji. That works just like the quotes and other feature that you see when you use the Full Editor's buttons on the top.
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: Infusion Update

Postby badnights » Sat Feb 11, 2017 10:47 am

If you want to be sure of which emoji you chose, click Preview instead of Submit. If you like it, you then Submit.

n my head my rls seems something like a fully formed foe - it looks a bit like the Balrog in the Lord of the Rings film (as in 'YOU SHALL NOT PASS')
In my head, RLS/WED is something that shouldn't be there. I shouldn't be sick. I still can't accept that I'm that person with a chronic disease. It feels all wrong somehow.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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