Requip to Gabapentin... When does it get better?

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saptree
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Requip to Gabapentin... When does it get better?

Postby saptree » Mon Feb 01, 2016 2:08 am

Hi,
I've been fortunate to have good luck with controlling RLS with 0.5mg Requip until recently. I had surgery in October and it seemed to trigger a resurgence of RLS that not only occurs at night, but during the day too. I have been using T3 to control breakthrough symptoms at night, but during the day? Nope, fed up. So I saw my sleep dr 2 weeks ago. He is fairly new to me, a different Dr had started me on Mirapex, then onto Requip. I've been on DAs for about 5 years total.
So my current Dr says I'm experiencing augmentation. My ferritin level is 56. I've been taking iron tabs for years and this is the highest I've ever been. Anyhow he told me to take 100mg gabapentin for 7 days along with Requip for 3 days. Stopped Requip after 3 days. Then to up the gabapentin to 200mg at day 8. He told me to use T3, or oxycodone left over from surgery to get through the change. T3 has completely quit working. I'm on night 4 of 200mg gabapentin. Last night I used oxycodone and it was effective.
My question for those of you with experience, how much longer before gabapentin will work? Will it ever work as well as Requip did in eliminating all my RLS symptoms, and if oxycodone works, what is the point of gabapentin at all?
I also take 150mg Zoloft ( which I've tried to change to Wellbutrin in the past without success), Pepcid, Allegra, iron, B12, and one 500mg metformin for PCOS.
The only good thing about making this change right now is that I'm currently unemployed. I had a job when I had surgery, but was "let go" the day I returned from disability.

ViewsAskew
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Re: Requip to Gabapentin... When does it get better?

Postby ViewsAskew » Mon Feb 01, 2016 8:20 am

It's not so much that the gabapentin (and opioid) isn't working, it's that it takes awhile to get through augmentation, stopping ropinerole (or any similar dug) when augmented causes a huge increase in symptoms, and the medication you are taking cannot cover the increased symptoms. The first 5-10 days after you stop is MISERABLE! it starts to get better then - and depends on the person as to when it gets a lot better. As short as 10-15 days - and as long as 30 or more.

But, most people find that the new medication starts holding its own by day 15 or so.

Also, you are on a very low dose of gabapentin. Most people take at least 300 MG and some people as much as 900 3 x a day - for a total of 2700 mg. So, you really may need more.

Opioids do work, but are not without their own issues. Lots here in older posts about augmentation, opioids, and so on that may help you feel more comfortable about the options and what might be best for you.
Ann - Take what you need, leave the rest

Managing Your RLS

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badnights
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Re: Requip to Gabapentin... When does it get better?

Postby badnights » Mon Feb 01, 2016 9:24 am

Yup, you are on nowhere near enough gabapentin to touch those symptoms, in fact no reasonable amount will help augmentation. I would guess that 200 mg is not even enough to control your baseline symptoms, but that is a guess; you will find out what your baseline symptoms are when the withdrawal is over. Right now, as Ann said, if you're withdrawing and have augmented, nothing will touch the symptoms except potent opioids. You really have to expect to get nothing done for a few days or a week, make some space for yourself to get through this. Your doctor should know how many minutes of sleep you're getting, how many minutes a day you can concentrate on anything - try to quantify for him the misery you're in. Maybe he will see the light and prescribe two weeks of oxycodone or hydromorphone.

Once you're through this phase, you will know what your baseline symptoms are really like. Then you will be able to find out if gabapentin alone will control them. There are not many people on this board that I know of who successfully use just gabapentin to control WED/RLS. And the doses people take, even in combo with other meds, are always higher than you're taking - 900 mg minimum, more like 1800 - 2700, as Ann said.

Good luck with this withdrawal. Remember it will cease, you will be through the other side. Check the days off and see how you feel after a week.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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saptree
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Re: Requip to Gabapentin... When does it get better?

Postby saptree » Tue Feb 02, 2016 12:48 pm

I messaged my Dr yesterday and he told me to go to 300mg gabapentin. I did that last night. I do have oxycodone. I should just take it rather than waiting for symptoms, right?
I hope this is withdrawal and it gets better soon. I'm in a bad way at the moment. I have pain from all the movement every night.

Once one has augmented and been through withdrawal, then what? Can I ever go on Requip again?
Sherry

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Re: Requip to Gabapentin... When does it get better?

Postby Polar Bear » Tue Feb 02, 2016 2:11 pm

The general consensus would be that once you've augmented on a DA then it's highly likely that it will happen on any DA. You've tried Requip, some Drs may suggest have one other go on a different DA such as Pramipexole. It could be that having been without a DA for a very long time that it 'may' be possible to use in an alternating regime..... i.e. 3 days on one medication followed by 3 days on another medication..... or a similar pattern. All worth discussion with your doctor.
Betty
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JimmyLegs44
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Re: Requip to Gabapentin... When does it get better?

Postby JimmyLegs44 » Tue Feb 02, 2016 2:24 pm

saptree wrote:Once one has augmented and been through withdrawal, then what? Can I ever go on Requip again?
Sherry

Most experts say once you augment on a DA, you will augment again very quickly if you go back on, so it is not recommended that you go down that road again.

Unfortunately, you will find your options are limited once you are through the withdrawal. If you continue on medications, you will be limited to an alpha-2-delta ligand (gabapentin, Lyrica, Horizant) or an opioid. Alternative therapies are available, such as Kratom and marijuana, and many have had success with these, but they are not without issues of their own.

I went off Mirapex on Dec. 9th. If you have a couple of days, you can read about my story in the thread "Dopamine Agonist Withdrawal". Ann is right...the first 10 days is completely miserable. But it does eventually get better. I tapered very slowly, using up to 600 MG of gabapentin before I even discontinued Mirapex. By the time I stopped Mirapex, I was on 300 MG of Lyrica (Dr. Silber at Mayo switched me over to Lyrica, as it is better absorbed than gabapentin). After the first two nights (in which I got pretty much zero sleep), I upped the Lyrica to 450 MG with Dr. Silber's blessing, but went back down to 300 MG a week later because I was doing some strange things in the middle of the night on the higher dose. For me, I was through the worst of it in 15 days, but didn't feel like I was really through the withdrawal until I made it through day 30.

My long-term plan is to not take medications for my RLS, if I am able to get at least 6-7 hours of sleep without drugs. I'm still taking 300 MG of Lyrica, and am getting a blessed 7 hours of sleep per night.

I don't believe the Lyrica really did much for my overall quantity of sleep during the withdrawal, but it did settle my legs so it wasn't quite so hellish to go through, even if I couldn't sleep. I did think more than once that I should have gone the opioid route. Now that I'm through it, I'm glad I didn't, but the urge at the time was overwhelming.

Best of luck to you. Again, it will eventually get better, even if it doesn't seem like it ever will at the time.
The best way out is always through. - Robert Frost

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Re: Requip to Gabapentin... When does it get better?

Postby ViewsAskew » Wed Feb 03, 2016 8:22 am

Only one thing to add to JimmyLegs post - while you shouldn't take a DA again after augmenting like that, you CAN take one if you alternate it with another drug. If it took you, say, 1 year to augment, you might be able to easily take it for a month or two, then stop for a week and use an opioid, then start it again.

I've been alternating for over 4 years now - but weekly because i augment REALLY fast. I haven't had an issue yet with augmentation.
Ann - Take what you need, leave the rest



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saptree
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Re: Requip to Gabapentin... When does it get better?

Postby saptree » Sun Feb 14, 2016 7:30 am

I "think" I'm past the worse part. Now I can sleep about 2 hours before I start wiggling in my dreams. I'm up to 600 mg of gabapentin at night. I can use 5mg of oxycodone early in the night to avoid all symptoms of RLS. Otherwise I wait it out to 1 or 2 am, then take a T3. Then wander around the house for a while. I miss having complete elimination of symptoms from
Requip. Thank you for your support and encouragement.
Sherry

ViewsAskew
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Re: Requip to Gabapentin... When does it get better?

Postby ViewsAskew » Fri Feb 19, 2016 6:21 pm

YAY!

[and who thought I'd ever be excited over hearing of someone sleeping 2 hours :-) ]
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.

saptree
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Re: Requip to Gabapentin... When does it get better?

Postby saptree » Wed Feb 24, 2016 12:50 pm

My sleep dr is having me go up to 900 mg gabapentin at bedtime. Is this appropriate? I'm still having RLS every night, popping T3 or oxy to get through it. Sometimes it works, sometimes it doesn't. Anybody use clonazepam on top of gabapentin?

Stainless
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Re: Requip to Gabapentin... When does it get better?

Postby Stainless » Thu Feb 25, 2016 2:54 pm

I used clonazepam for 20 years every night. I started with .5 mg and slowly increased to 3 the last two years. I had no side effects or hangover and slept like I was knocked out, because I was. My whole life I only had RLS in the late afternoon to varying degrees and then again at bedtime. I just dealt with the afternoons, sitting on a plane, working into the evening and took medicine at bedtime. Then I came across a large Canadian study that linked it to an increased chance of Alzheimer's and decided to quit without understanding the ramifications.

Last year I took 300 - 600 mg. gabapentin to help me get off the clonazepam which seemed to help but I don't know how much was clonazepam and how much was gabapentin. My clonazepam withdrawal was a nightmare and went on for 6 months while tapering down and 3 more months since I quit the last tiny bit. The withdrawal symptoms are finally mild but to nonexistent but the RLS is a new beast. My RLS seems to now be 24/7 and much more intense. Maybe that was masked by clonazepam but maybe not. I went from gabapentin to adding Ldopa to no drugs for 2 weeks with no relief to 1 mg. ropinirole which works for now.

My feedback would be to avoid becoming dependent on clonazepam if you can. If you are and decide to get off, taper very very very slowly and have a plan. If you keep using it, stay on as low a dose as will allow quality of life. Gabapentin does not knock you out like clonazepam or stop the RLS symptoms in an hour like ropinirole but apparently helps a lot of people. In the end clonazepam has significant side effects and maybe long term issues. I expect to try it again to see if it is an alternative to DAs for me.

There does not seem to be a straight path forward with RLS and the current trend of treating it with opiates seems full of pitfalls. My thinking now with the ropinirole working is to get two steps ahead of RLS. That is proving to be a tough order. I don't mean to be negative and think a positive attitude is the very best medicine. Get healthy, stay healthy and distract yourself has been the focus of my recent efforts. Best of luck to all in the struggle.

ViewsAskew
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Re: Requip to Gabapentin... When does it get better?

Postby ViewsAskew » Mon Feb 29, 2016 6:29 am

saptree wrote:My sleep dr is having me go up to 900 mg gabapentin at bedtime. Is this appropriate? I'm still having RLS every night, popping T3 or oxy to get through it. Sometimes it works, sometimes it doesn't. Anybody use clonazepam on top of gabapentin?


I believe the dose is fine - 900 mg per dose is max, up to 3x per day.

Clonazepam is tricky. It can help, but it can be very problematic. Too tired now...hope I remember to come back and share...
Ann - Take what you need, leave the rest



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Re: Requip to Gabapentin... When does it get better?

Postby Rustsmith » Mon Feb 29, 2016 8:18 am

My doctor gave 900 to 1200 mg of gabapentin at bedtime to help me sleep. I have found that 900 mg works well to counter what I think of as early night insomnia because it makes me drowsy enough to be able to fall asleep. Unfortunately, the half life of gabapentin is short enough that it does not help me stay asleep, so I usually only get about 4 hrs of sleep using just the gabapentin.

At one point I tried 1200 mg each night. It did not seem to work much better and I encountered one of the less common side effects listed as a "male" specific side effect. My problem was an inability to achieve orgasm, not ED, just an inability to finish.
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.

saptree
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Re: Requip to Gabapentin... When does it get better?

Postby saptree » Mon Feb 29, 2016 7:27 pm

900 mg of gabapentin is too much for me. I'm very dizzy all night and half the next day. Plus it seems that my RLS symptoms are worse, as in all night and in the morning. I'm assuming I can't quit cold turkey so I'm waiting for guidance for a weaning plan.
I'm just plain exhausted.
Sherry

saptree
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Re: Requip to Gabapentin... When does it get better?

Postby saptree » Tue Mar 01, 2016 2:59 am

Actually... I was chatting with my pharmacist about my issues with gabapentin and he said it may be an issue of taking 900 mg once a day rather than 3 times a day. I may be experiencing withdrawal symptoms when I get a splitting headache in the afternoon. Which I have had happen the past 2 days. Waiting to hear back from my doc still.


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