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Re: Topic of the Year

Posted: Thu Jan 21, 2016 11:02 pm
by ViewsAskew
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.

Re: Topic of the Year

Posted: Fri Jan 22, 2016 2:56 am
by Yankiwi
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

Re: Topic of the Year

Posted: Mon Jan 25, 2016 9:10 am
by badnights
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?

Re: Topic of the Year

Posted: Fri Feb 26, 2016 4:11 am
by Yankiwi
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.

Re: Topic of the Year

Posted: Mon Apr 04, 2016 8:40 am
by badnights
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.

Re: Topic of the Year

Posted: Tue Apr 05, 2016 7:38 am
by Yankiwi
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.

Re: Topic of the Year

Posted: Thu Apr 28, 2016 6:46 pm
by badnights
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.

Re: Topic of the Year

Posted: Thu Apr 28, 2016 7:27 pm
by Polar Bear
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.

Re: Topic of the Year

Posted: Sat Jan 07, 2017 9:18 pm
by srgraves01
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

Re: Topic of the Year

Posted: Sun Jan 08, 2017 4:14 am
by ViewsAskew
Given that they happen during sleep, they aren't likely hypnic jerks.

Re: Topic of the Year

Posted: Thu Feb 15, 2018 2:03 am
by Billdel
Hi, I am Billdel. I began withdrawal from 3 mg/day of pramipexole since it became available, and 4 mg/day for the last 6 months because of worsening RLS symptoms. It had begun acting out in my shoulders and I was having a deteriorating balance problem. Suddenly I was gaining weight by eating everything within reach even though I really was not hungry. For about the last year I noticed that I would take a 1mg pill (part of a regular schedule to keep the symptoms away) while having not symptoms and within 30 minutes it started in my legs. My leg muscles were becoming weaker despite exercise and my stamina was dropping fast. At that point I began researching RLS on the web and found RLS Foundation and HealthUnlocked.com. In the literature and in discussion with many RLS sufferers, I discovered "Augmentation". And, it fit very well, many of the increased symptoms/maladies I was developing.
I decided to kick the primapexole by decreasing the dosage over a period of time. The first day, Jan. 21, 2018 I dropped from 4 mg to 2 mg and had a lot of difficulties that day. I decided not to drag that awful feeling out any longer than I had to, and stopped it completely starting Jan. 22. I can't really describe how bad the next 8 days were. I slept, maybe, a total of 8 hours, during that time. The symptoms were so bad, along with the exhaustion and frustration, that I had serious difficulty walking and could not stand for very long. God came to my rescue, and the next 2 days I had no symptoms and slept thru both nights. From that point, the symptoms become more regular, from early evening until early morning. Was not having many episodes during the day, although I was more active during that period, which I had found over the years tends to stave off the problem. I began contacting several Doctors that knew of my problem, looking for something to help me sleep thru the night. I tried a 2 mg Klonopin which absolutely zonked me out for the night. However, the next day I was groggy and couldn't walk a straight line. The next night I tried a half pill and it didn't work, so, I gave up on Klonopin, fearing another withdrawal problem. 1200 mg of gabapentin did nothing. Happily, but apprehensively, I found the Oxyconon/acetaminophen 10/325, 2 pills gave me a good nights sleep. Next, I tried 1 and it didn't help. Found I had to take 2 at the same time to get some sleep.
Well, sorry for the lingering complaint, but the good news is that I got my 1st visit to the Emory RLS/Sleep Clinic in Atlanta, today, with a great, understanding Doctor well known in the field, David Rye. So, I am hopefully headed for a non dopamine agonist, successful treatment of my RLS.
To be continued!

Re: Topic of the Year

Posted: Thu Feb 15, 2018 3:31 am
by Rustsmith
Billdel, you are very fortunate that the impulse issue that you had was eating and not gambling or shopping, like some pramipexole users. At least this way, you understood that something was wrong and found the cause on your own. Many have to have interventions from family members, often after personal finances are wrecked. You are also fortunate to be able to see a doctor at one of the Quality Care Clinics with the bonus of having a doctor who has RLS himself, so he REALLY understands.

We look forward to hearing more about your future treatments.

Re: Topic of the Year

Posted: Sun Feb 18, 2018 6:20 pm
by Billdel
Thanks Rustsmith. I am fortunate that I read, right here, about augmentation and realized I had a specific problem. My heart goes out to those less fortunate than I. Dr Rye and his team spent about 4 hours with me, getting all the details of my specific affliction and outlining the options. He laid out a plan of action with 3 or 4 options to be undertaken if or as 1 plan didn't work. I was and am really impressed with them especially after years of the "stab-in-the-dark" previous Dr.'s took.
My first treatment in the plan was/is 600 mg Horizant at dinner. And, it has been about 90% effective. The 10% is side affects ( hopefully only in the beginning), groggy, a little light headed and balance, which over the first 3 days have improved.
Thanks for the encouragement, and good luck to you.

Re: Topic of the Year

Posted: Tue Feb 20, 2018 5:11 am
by badnights
Billdel, you're very impressive for getting off the pramipexole without help. I can imagine the nightmare. I congratulate you on your decision to bite the bullet and get it over with. And on your decision to go to a QCC. I imagine Dr Rye and his colleagues spoke to you about not expecting to eliminate all symptoms - we seem to need less dose increases if we allow some manageable symptoms to remain.

Some other things to consider are vitamin D and diet. They may have mentioned vit D to you; most North Americans are deficient according to newer standards and it's ok (according to my physician, anyway) to take up to 4000 IU daily without getting a blood test to check for excess D. As for diet, there's no (not much) science behind this, but it may be that anything that aggravates your body can trigger the WED/RLS even without giving you overt symptoms anywhere else (like gut pain). Something like the Whole 30 diet or the GAPS diet might make a difference. Focus on whole foods, and find and eliminate any foods that cause your WED/RLS symptoms to flare up or give you gut or other symptoms (including cold-like or allergy-like symptoms).

Re: Topic of the Year

Posted: Fri Feb 14, 2020 6:56 pm
by JimHCNMT
To begin with, "Restless Legs" is a horrible misnomer. Makes it sound like a minor nuisance. I have never experienced involuntary movements of my legs with it. Any movement is intentional and done to try to stop the awful sensations in my legs.

I told my doc 20-25 years ago that I thought I might have “That Restless Legs thing.” He blew me off. At that time the sx’s were intermittent. When finally diagnosed, ~14 years ago, I experienced several months of getting only 2-3 hrs sleep/night, rendering me almost non-functional. Ended up on 2 MG ropinirole, with good results that lasted for 10-12 yrs.

Then the sx's got worse, was put on a higher dose, which helped for another year. Then was switched to pramipexole, which worked well for another year. Finally, developed what turned out to be augmentation. Indescribably excruciating sensations in my legs round the clock. Getting up and walking no longer helped. I would lay there massaging my legs with a rolling pin, even punching my leg muscles as hard as I could. Painful and left my legs aching, but at least it momentarily took the sensations away. Each night as this would go into its second, then third, hour, I felt like I was going insane from torture. Started planning suicide. Took a month to wean off the pramipexole, another 3-4 months to get up to a dose of gabapentin that is, for the most part, effective (1800 MG/day).

This past year has been life altering and hellish. Restless Leg Syndrome my a**. More like Make You Not Want To Be Alive Syndrome!