Topic of the Year

Use this forum to discuss any issues associated with Augmentation
ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Thu Jan 21, 2016 11:02 pm

Sleeplessinbb wrote:I began experiencing augmentation after a number of years of being on Miramax, and having to supplement my sleep with vicodin. my arms began jerking and flailing at night, my partner reported that I was pounding the mattress. that's when I remembered my father's pain had increased from his legs to his arms.
I found a neurologist who prescribed horizant and gabapentin , while we attempted to reduce the mirapex I was taking.
I was sleeping much better, until I got to .025 milligrams of mirapex.. I could not reduce beyond that, I was staying up late till 2/ 3 in the morning, dozing and waking and walking and eating.
in desperation I would pop a hydromorphone, left over from a previous surgery. I would finally pass out into a deeply drugged state.
last night, along with my medication, I ate a small pot brownie. I slept all night long without waking at all. it was marvelous. I think tonight I just may try to reduce one of my medications, while I in just a little more pot brownie. hopefully report back. now if we could just get Florida to legalize medical marijuana., even my neurologist is supportive of using pot medically.


Many of us have been here - it's a miserable place, isn't it? I can say that all of us that have gotten through it have found that it takes one of two things. 1) Just stop it at the .25 mg point and be freakin' miserable for 5-10 days (it almost always starts to get better by day 10, and often soon), or 2) have enough other drugs to help get through it. For most of us, the other drugs have been opioids, because that's what our doctors prescribed. Few of us have had access to kratom or MM to see if it can help with the worse of it.

Let's hope the MM works for you.
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.

Yankiwi
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Re: Topic of the Year

Postby Yankiwi » Fri Jan 22, 2016 2:56 am

I started on ropinerole two years ago. After getting up to about .625mg (2.5 tablets) I started augmenting and dropped back to one .25mg tablet which I split in half and take half two hours before bed and half at bedtime with one tramadol and a magnesium capsule which probably doesn't do anything but it seemed to for a few nights so I'm keeping it up. I can't sit for long in the evening but usually have no symptoms until my first wake up in the night.
Between two and three hours after easily getting to sleep I wake up with symptoms which get progressively worse until I get up. For about a half hour I read articles on my iPad while standing up, iPad on the table. During this reading session I stretch, squat, do little standing backbends etc. After a half hour I can usually get back to sleep for two to four hours when I do the same stretching routine while reading a book. I used to just stretch and sometimes still do when it's close to morning. It seems the reading and stretching work together to clear the RLS pain and clear my mind.
My pre ropinerole baseline RLS was about ten or more times as bad as it is now. I was up for hours at a time, walking, pacing, stretching, icing my legs, doing yoga etc and hardly getting any sleep. As long as I can carry on with getting up twice in the night I'm happy to continue to take ropinerole. I've thought about gabapentin but the possible side effects scare me. The related gaba drugs are not available in New Zealand. I also take 60mg codeine on car trips (as a passenger) over 45 minutes, movies, evening meetings etc

badnights
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Re: Topic of the Year

Postby badnights » Mon Jan 25, 2016 9:10 am

Yankiwi, "if it isn't broken don't fix it" It seems you've got things under control with your current regimen and it's not a high dose of ropinirole.

I'm interested that you managed to deal with the augmentation by dropping the dose. I haven't looked back to your old posts and I don't remember your story - did you stop the ropinirole completely and re-start it, or just cut back?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Topic of the Year

Postby Yankiwi » Fri Feb 26, 2016 4:11 am

Hi Beth,
I don't know how I missed your last post as I check new posts every day but I was away for the January 22 weekend.
I didn't stop the ropinerole completely, just cut back gradually until I got down to one tablet (from 2.5). It is continuing to work and I don't mind (too much) getting up in the night. In fact, I get a lot of reading done. I'd do housework but I don't want to wake my husband up.
In the evenings, if I have something important to do on the computer (I'm a graphic designer) I can sit for hours with no symptoms. If I'm just fooling around I can't. I try to have a project, such as tonight I'm making pesto and for the past few nights I made jam. Being busy keeps my legs in check.
If an idle mind is the devil's workshop, idle legs, along with the idle mind, are the Marquis de Sade's playground.

badnights
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Re: Topic of the Year

Postby badnights » Mon Apr 04, 2016 8:40 am

I don't check in every day anymore :( :( and clearly I haven't checked this forum in a very long time, because I didn't see your reply.

You might be the only person here who has controlled augmentation by dropping the dose. The only one I recall reading about, at any rate.

I used to just stay up and do stuff when I woke up, like you, but that was when I had more flexibility about my work hours. Also, I think things weren't as bad then. Now, it seems I'm always on the edge of extreme exhaustion. But I hear you about the concentration, a lot of other people have noticed that too.
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

Yankiwi
Posts: 231
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Location: West Coast, South Island, New Zealand

Re: Topic of the Year

Postby Yankiwi » Tue Apr 05, 2016 7:38 am

Hi Beth,
Maybe I was able to reduce my DA dose and stop augmentation because quite a few years ago I took Sinemet and augmented (even though I didn't know what it was called then) so because of my experience and what I read on this forum I knew right away what was happening with the ropinerole. I got some good advice to cut back and did, luckily it seems, before it was too late.
It's 7:30pm right now, my first half of a .25 ropinerole tablet is at 8:00. The state of my legs and medication are never far from my mind in the evening. Last night I had about two hours of boring work to do on the computer and my legs were killing me. By bedtime (10:00), they were okay. I slept until 2:15, was up until about 3:30 not because of my legs but because of what I was reading. I then didn't wake up until 6:30am, got up to stretch and rub my legs and was able to stay in bed until 7:30am so that was a pretty good night and fairly typical.
It's such a crazy affliction! I need to get out of the computer chair now and move.

badnights
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Re: Topic of the Year

Postby badnights » Thu Apr 28, 2016 6:46 pm

I knew right away what was happening with the ropinerole. I got some good advice to cut back and did,
If that's the reason, then it certainly pays to catch it early.

I need to get out of the computer chair now and move.
I can almost never sit at my desk, even during the day. I took a bookshelf and screwed plywood legs on it, and now I can put it on my desk in front of my monitor, which is mostly higher than the bookshelf, tilt the monitor back, move the keyboard and mouse to the bookshelf, and work standing up.

At work it's even better; I have a desk that's a discarded eye doctor's table, with the contraptions stripped off the top and replaced by a plain board. It's a power-operated height-adjustable desk.
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

Polar Bear
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Re: Topic of the Year

Postby Polar Bear » Thu Apr 28, 2016 7:27 pm

Badnights - awesome work desk !!

My last years of employment had a long coffee table perched on top of a normal office desk. Easy to set the coffee table underneath the desk during a good spell.

Absolutely anything that works.... is a goer.
Betty
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srgraves01
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Re: Topic of the Year

Postby srgraves01 » Sat Jan 07, 2017 9:18 pm

ViewsAskew. I have not logged on in a very long time. You mentioned that my jerks could be hypnic jerks. I am no expert either. However, these jerks also occur during sleep. They can also be somewhat robust. The meds that help rls also help these jerks, at least for a period of a few days. Not sure exactly what is going on. That is something to look into.

SteveG

ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Sun Jan 08, 2017 4:14 am

Given that they happen during sleep, they aren't likely hypnic jerks.
Ann - Take what you need, leave the rest



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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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