Withdrawal story. Lyrica.Help! - Restless Legs Syn...

Restless Legs Syndrome

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Withdrawal story. Lyrica.Help!

Katerina22 profile image
24 Replies

Hi everyone!

After suffering from rls from a very long time i finally found a doctor who knew about augmentation and suggested to cut down on pram.(All the other suggested to upper the dose.)He made me stop pram in 3 days!I got mad with legs jerking and no sleep!He put me back on pram and never answered again his phone leaving me helpless!!!What a big jerk!

Luckily found another doc who knew about augmentation.I had an appointment with him 2 days ago.He suggested to cut down o pram 1×0.18 during a month and at the same time he put me on lyrica 50 mg gradually uppering the dose.

My question is how much time does it take for lyrica to have full effect?He suggested that lyrica would work pretty well within 3 -4 days.(He said take 50mg for 3 days.If that doesnt work then take 75 mg for 3 days etc)That suggestion makes me anxious because i think its too soon to make a conclusion about lyrica s effectiveness!

Thank you all for your help!

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Katerina22
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24 Replies
Madlegs1 profile image
Madlegs1

Your last doctor is going the correct approach.

Your body will be very confused during the changeover- suffering withdrawal and coping with Lyrica.

Give it time and don't rush to judgement.

Rest , take hot baths with epsom salts , drink fruit juice and take vit c.

All the best. You will get through this.

burri8 profile image
burri8

I have taken Lyrica for about six years. I have fibromyalgia and Osteo-arthritis. Lyrica has worked very well for me. After several years I have had to change my dosage but I feel this is the better arthritis medicine out of all the others I have taken, on the market. It could be different by patient, but within 30 minutes of taking my medication I can see great results and my arthritis pain and fibromyalgia are not bothering me like it has before I took the medicine. I would not trade anything for this drug. I hope you will get great results like I have with Lyrica when you start taking it. Ron

Joolsg profile image
Joolsg

Hi Katerina,

You won’t know if Lyrica is effective until you’re completely off pramipexole. Withdrawal symptoms will be bad for weeks after last dose. Stick with it. Stay strong.

nightdancer profile image
nightdancer in reply to Joolsg

precisely what I was going to say, dealing with the same issue in one of my groups today.

in reply to nightdancer

So, nightdancer: are your groups in person, online, or both? Just curious. That’s great that you run those! Kudos to you!

nightdancer profile image
nightdancer in reply to

used to be in person and emails back in the "old" days, as in mid nineties. Yahoo has groups, and I started one in 1996 when I got my first computer. IT was the only group around for a long time. We were TOTALLY lost back then, but one thing I have noticed is that we still have some of the same conversations to the present day. I am now primarily on Facebook groups, that are closed and private to the public.

nightdancer profile image
nightdancer in reply to nightdancer

And, the FIRST web site I saw on RLS was Dr, Buchfuhrer's web site, so have been in contact with him since the beginning of the groups. :)

Pippins2 profile image
Pippins2

You wouldbe better with a strong painkiller such as Tramadol as your dose of Pramipexole gets lower. Although Lyrica works well for some people's RLS symptoms it isn't the best for withdrawals c

Bganim1947 profile image
Bganim1947

Been through exactly what you are going through. I had to discontinue my Ropinerole and Gabapentin from last January to June with the guidance of the people on this website—the ones who just answered you. Thank God for them!

In June I had to go cold turkey off the final dose of both meds. It was a summer of pure hell. So I know how you feel. You are doing the right thing switching to Lyrica, but your doctor may be wrong, at least in my experience, about the time it will take for your Lyrica to take effect.

For me it took about three weeks to finally feel a sense of relief from the withdrawal symptoms. But I was still having lower leg RLS sensations for about another month or two, but not every day. I was getting frustrated thinking I couldn’t depend on Lyrica to give me consistent results, but I was wrong. It did finally after another two months. I know it may sound like a long time when you are in the middle of it, but believe me it will pass. As my doctor told me, hang in there, every day will get a little better. And it did!

What helped me make it through was Percocet. My doctor gave me a script for 5.325mgs at night whenever I felt a bad night coming on. She also put me on Tramadol at the same time as the Lyrica. Eventually in about a month of beginning that regimine, I no longer needed Percocet.

Here’s what I learned about taking Lyrica: I was on 100 mgs 3x/day along with 100 mgs of Tramadol 3x/day. That combination was essential. Whenever I tried not to take the Tramadol I would have an RLS episode. I also learned that it is really important to take that combination of the two meds in doses that are precisely 7 hours apart, because of the half life of Lyrica—it wears off in 7 hours. You have to stay on top of your meds. I set my phone alarm for 8 AM, 3 PM, and 10 PM. With my last two doses I also take Iron Bisglycinate, aka Gentle Iron. It is fabulous! It boosts the body’s iron stores much more effectively than iron sulfate. You will also need to take it with orange juice or vitamin C pills. The vitamin C helps it cross the blood-brain barrier. I also learned to absolutely stay away from chocolate and alcohol. I take a short 45 minute lie down after my second dose in the afternoon, as the Lyrica and Tramadol make me sleepy. At 8 AM it doesn’t matter since I can go back to sleep til 9. When I had to be up earlier, I adjusted my doses so that I took my morning dose at 7, afternoon at 2, and the evening at 9. It doesn’t Matter when you take it as long as your doses are 7 hours apart.

Now I have almost no RLS at all. And when I do have an occurrence, it is so mild I can usual just get up and walk around for a few minutes and it’s gone.

I also discovered the most amazing cream. It’s called Relaxing Leg Cream by MagniLife. You can get it in most pharmacies in the US and Walmart, or online. When I feel a sensation starting in one of my legs, I get up and immediately put that cream on my leg. It smells great, not at all greasy, and dries in seconds. As soon as I put it on my leg or legs the RLS sensation disappears completely and doesn’t come back. It is miraculous.

I hope this lengthy tome helps you through. It will pass, I promise. Best wishes.

Bganim1947

involuntarydancer profile image
involuntarydancer in reply to Bganim1947

Hi Bganim,

have you ever tried to reduce your dose of pregabalin to see how much of the coverage you are getting from it and how much from the tramadol? Obviously I’m not suggesting you do this but I just wondered.

I have experimented with pregabalin on and off over the last year and a half or so and I’m still not sure how much benefit I get from it. Maybe I just haven’t gone to a high enough dose. The most I took was 200mg daily which I’m told is a relatively low dose. Whereas when I was on an opioid (in my case OxyContin rather than tramadol) I got total coverage for my symptoms, albeit at a cost in terms of side effects.

Bganim1947 profile image
Bganim1947 in reply to involuntarydancer

Hi Involuntary dancer, a great question. When I first started on Lyrica, I was only taking 100 mgs of Tramadol once a day at bedtime. I was still having full body involment, although less then before the Lyrica. When my doc upped my dose of Tramadol to 100 mgs twice a day—3:00 PM and 10 PM. My symptoms subsided a bit more, but I was still opting to take Percocet at bedtime instead of Tramadol, whenever I felt an RLS episode coming on. (FYI to those new to this site—you can’t take Tramadol with Percocet, it’s too strong, and can cause overdose possibilities) When she put me on Tramadol 3 times a day, I finally started being symptom free.

That said, I’m not sure if it was the Tramadol or just that my body had finally acclimated to the Lyrica. I do feel it takes a good two to three months to experience the full benefit of Lyrica.

I was the one who suggested to my doctor that we try Tramadol 3 times a day, because I was told by members of this forum that two meds are better than one at treating moderate to severe RLS. Dr. Bruchfeuer, the noted RLS specialist, also recommended that to me in a private email as I was asking for his guidance during my withdrawal phase.

Even though my cold turkey withdrawal was the worst physical challenge of my life, I am so glad I did it and got off Ropinerol.

involuntarydancer profile image
involuntarydancer in reply to Bganim1947

Thanks for that comprehensive account Bganim. I can't work out how helpful pregabalin is for me. I have never got to a level where it covered my symptoms on its own but I do think it helps when I am taking something else as well. RLS is so tricky, I suspect it helps to attack it from a number of different directions.

in reply to involuntarydancer

I have just added pregabalin to take with my other meds, and it is letting me get better sleep still not all night, but better. But i am only taking 25mgs twice a day at the moment. Pregabalin i think works better with other meds rather than on its own.

Katerina22 profile image
Katerina22 in reply to Bganim1947

Thank you all so much!May i ask you if you are still on Tramadol? I am concerned because Tramadol is an opiod and i dont know if someone is supposed to take it permantly.I wasnt given any opoid during my withdrawal.

Bganim1947 profile image
Bganim1947 in reply to Katerina22

Yes, I am still on Tramadol, my primary care doc says it is an ideal kind of opioid that she doesn’t worry about too much, because it has a different classification than Percocet, etc. Any medication can be addictive or create dependency—two similar, but separate issues—depending on what it’s used for, but this drug doesn’t have the side effects of other opioids, and is easier to discontinue, albeit slowly as with all meds.

I now have an RLS movement specialist doctor I will see again next week. I was not seeing her during my withdrawal phase, but she said I did it exactly as she would have, by titrating off the Ropinerole slowly, and then doing the same with Gabapentin, and introducing Lyrica slowly at the end. I was on 600 mgs of Gabapentin 3x/day. However, she did say she would have introduced Lyrica into my med mix sooner as it would have made the withdrawal phase easier.

As you may know, Ropinerol is a Dopamine Agonist like your Pram. Both can cause augmentation after a while.

When I see the RLS doc next week, she wants to try reducing my Tramadol dosage just see if it makes a difference. I’ll report back on that. Be well everyone.

jan_ET profile image
jan_ET in reply to Bganim1947

Hello Bganim1947 I live on Gold Coast as well - could you tell me of a doctor who knows about RLS and augmentation from Sifrol/Pramipexole please? I sm nearly off Amitryptoline ( 1x 25mgs to go) but had to increase Placil/Anafranil as Icouldnt function very well- now cant sleep - last night got to 2.30am and have to work all day - Im getting worn out from all this and the hit and miss of doctors. Friday I forgot to fill script of Sifrol and instead of 3x 0.25 I only had 1x 0.25 - RLS took off omg - lucky I had Codeine but even that didnt help much - anyway any advice would be appreciated - thanks, Jan

Bganim1947 profile image
Bganim1947 in reply to jan_ET

I’d like to help you, but I don’t know where or what the Gold Coast is?

jan_ET profile image
jan_ET in reply to Bganim1947

Gold Coast Queensland Australia - Labrador - sorry I thought you were the one at Paradise Point Qld In Australia - Jan

Katerina22 profile image
Katerina22 in reply to Bganim1947

Did the cream help you while you were on augmentation?Thanks again!!

Bganim1947 profile image
Bganim1947 in reply to Katerina22

Didn’t know about it then, but doubt it would help since withdrawal felt like a deeper internal thing. The RLS I have now is a light, closer to the surface of my leg or legs. Very different sensation.

Katerina22 profile image
Katerina22 in reply to Bganim1947

Τhank you so much!I have tried the cream you mentioned but it had no effect to me. Maybe because i was on augmentation.I ll give it a try again when augmentation wiil be over (hope soon enough!!)

Bganim1947 profile image
Bganim1947 in reply to Katerina22

Save if for post withdrawal— this will end soon. Withdrawal was the worst physical experience of my life, but I’m glad I went through it. It taught me so much about myself. Plus it gave me so much more compassion for what drug addicts face when trying to quit. Daunting!

Joolsg profile image
Joolsg

Wow bodziu,

That’s incredibly brave. How is your RLS without any meds?

I understand why you don’t want to take any medication after withdrawal from a dopamine agonist. I agree that it was hell but I couldn’t cope with the nightly RLS so went on alternative meds.

Take care

Joolsg profile image
Joolsg

Brilliant reply from Bganim. Listen to what she has to say Katerina and stick with it.

You will get through withdrawal and you will find a meds regime that helps.

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