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Restless Legs Syndrome
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Lyrica

I have read some of your posts about Lyrica and am not feeling very positive about trying it. My neurologist suggested it since I’m to not able to tolerate pramipexole and sinemet. I need some feedback. One of the side effects I’ve had from DAs is extreme depression/anxiety. I am at the end of my rope. My inclination is that low dose opioids might be the answer but we all know how most doctors feel about prescribing opioids.

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Hi

I’ve been on Pregabalin (lyrica) for two weeks and so far everything is positive. Slight RLS occasionally but I’ve less anxiety and sleeping much better than I did within Tramadol.

I was on 50mg Tramadol for 2 years after withdrawing from ropinirole and actually found it really helped my legs but not my sleep. But I’ll take that - anything but RLS! I only stopped as it lost its efficiency and my doctor was reluctant to keep prescribing it. A break seemed like a good idea too.

I’m not sure how long the Pregabalin will continue to work - no drug seems to last forever, and then I’ll have to have a rethink, maybe back to Tramadol but never ropinirole!!!

Don’t be put off by what other people say, we are all different and all react differently. If you decide to persevere with the Pregabalin don’t judge it while you are still in withdrawal, when the withdrawal effects are over you need to give it at least a month to see if it is for you.

Pam

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Yakester , I agree with Pam. Lyrica works differently for different people. You can only know if it works for you by trying it. Increase dosage slowly (usually 3-7 days for each level) until you find a dose that helps you, or until you have side effect issues. As for me, it has worked well, but is not in itself sufficient (I'm currently taking 300 mg in the evening, but I also use the Neupro patch). I did not have issues with weight gain, as some others have had. But it has slightly increased swelling in my legs, another side effect some people get.

Good luck!

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Hi

Can you tell me how long you’ve been on Pregabalin (if you don’t mind!) and when you realised you needed to supplement it? I’m on 150mg (only been on it 2 weeks) and want to try and keep it as low as possible but I guess I will keep needing to up it! And then I worry about if I have to come off it what the withdrawal will be like. No way can it be as bad as ropinirole 😅

I’m trying to read up on it as much as possible and I really want it to work so I’m trying to keep a positive mind set.

But It does worry me that eventually we will all run out of options! Ropinirole lasted a year for me and Tramadol 2 years. Maybe a cure next?! 😂

Pam

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Hi, Pam, I was never on pregabalin by itself, but always in addition to a DA, in hopes of keeping the DA dose lower. I'll give some background:

I had been on just pramipexole for about 7 years, and increased over time up to 2.5 mg due to augmentation (way too high, but my Dr. and I didn't know better). Finally I saw a neurologist who did know better, and she got me down to 0.5 mg pramipexole plus 2100 mg gabapentin. That combo worked pretty well for about 3 years. Then I decided I wanted to try the rotigotine patch, and also to experiment with other gabapentin variants like Lyrica and Horizant (that didn't work well for me; it lasted far too long into the next day). I think it would have been better to leave well enough alone. I've now augmented on the 3 mg patch (just dropped back to 2mg yesterday). I am now thinking of going back to my previous regimen of gabapentin plus pramipexole.also had an iron infusion recently, and will wait to see if that pans our.

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Hi I have had RLS for years different tablets no good been on pramipexole very low then went to see a neurologist and she told me stop taking them then she put me on stronger dose 0.18 1 at 15 00and 1at2100 worked for about 3 months now climbing the walls. Can't but up with much more I phoned the neurologist and she sent a letter to my doctor and me saying increase to 180 mg three times a day but she put in the letter it want releave his symptoms for very long then it will be back to what can I take I have a appartment with doctor Thursday see what he says then I have a nother appointment with the neurologist in may long to wait if climbing the walls again I will phone her again sorry to write all this to you all the best to you I Wii let you know how I get on XX Henshaw 241241

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Hi Yakester, My husband and I were both prescribed Lyrica and we both put on weight quickly but I have heard others that do not have that problem. Good luck!

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The weight thing is s big concern for me. I guess I’ll give it a try.

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If it’s a choice of calm legs and putting on a bit of weight I’d take that! I’d rather tackle weight loss than restless legs any day!!!

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I'm one of the folk who have posted some warnings about pregabalin so will try to clearly think what i might do knowing what I do now.

I've never taken a DA.

I seem to have had pretty dreadful RLS at this level for several years. I have never had a night without an episode for many years and a normal night is to start needing to wriggle around 9pm, maybe get to sleep around midnight, be woken on average 3 times, lots of measures needed to get me back to sleep, max length of sleep in 1 go 2hrs, if i'm lucky usually can get a peaceful 2-3 hrs up till 10am but not always,

i don't think I'm as bad as those of you who are trying to withdraw from DA's. but i wasn't as bad as i am now before i took pregabalin. i was worse when gradually withdrawing from it with a horrible increase in symptoms spread into arms and back. I still have that spread some of the time.

I started with 50mg pregabalin and it worked straight away.This may be unusual or ,maybe it works quicker if you've not previously taken a DA. Each dose strength began to wear off so I increased to 75 then 100mg then 125 then 150mg over the years and eventually the 150 stopped working too. By this time I had put on loads of weight, hadn't known it was a side effect and my balance was poor so i gradually stopped it. The weight came off without effort when I stopped it.

I THINK i would take it again because of the good few years it gave me but I do think I augmented on it and also harbour a suspicion that can't be proved either way, that in the long run it made me permanently worse - but of course that could just be how my RLS was going to go.

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Hi Alison

Thanks for your honesty. It’s early days for me yet but having augmented on ropinirole and become tolerant of Tramadol it’s difficult to know what to try next. So Pregabalin it is!

I’ll give it my best shot as otherwise I’m running out of ideas. I’m aware to look out for weight gain and I know the signs of augmentation having been through it once. I don’t see as if I have a choice. If I don’t try this what next?

I too have had a spread of the condition to my arms and body. I’m not sure if that is a hangover from the ropinirole or a natural progression. At the moment, while taking Pregabalin, it’s gone. I may pay the price later!

It seems to me that everything stops working after a while and that’s quite a depressing thought!

Pam

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I dont think it was I who posted about Lyrica - I have never taken it. It's pramipexole which I've had and found to be hell packaged as something good. Lyrica is another DA, so it probably has somewhat the same side affect profile. I am not really familiar with RLS - its Parkinson's that I started it for and wish I never had, because they dont tell you the whole story. You cant get off of it. And the whole time you are faking it, it is insidiously destroying your heart. If you dont stumble across the studies, you wont know. They sound the same - prami carries with it a type of depression also. It's actually anhedonia - a lack of desire to do anything. It also has nightmare dreams, hallucinations (mostly bad) and extreme physical discomfort if you start reducing it. It has taken me 2 months to get down from 1.5 mg a day to 0.125 mg, and every time I try to drop that I have to go back because of brain fog and fatigue.

I dont know if rls is a dopamine disorder- if it is there is an alternate method to raise the dopamine levels. Prami does do that - supply dopamine. But so does another combination, and that one does it better.

I also was diagnosed with ADHD, a other dopamine disorder. For that I take dextroamphetamine and methylphenidate together. One causes your body to make more dopamine and the other keeps it in your system. I found that the ADHD meds worked better than the prami, and that is the way I'm going to go because it's a natural dopamine. I wont tell you to try it, only tell you I'm as good as new while taking it.

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Hi, Audioman, sorry to hear about all the conditions you are dealing with. I'm glad you've found some meds that work for you. Just a couple of clarifications, though:

1. Lyrica is not a DA. It is a gabapentin prodrug (meaning another, more effective, way to get gaba into the system, compared to straight gabapentin).

2. Even though dextroamphetimine works for you, i would caution others about using it. Most RLS experts agree that it aggravates RLS.

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So Lyrica works by adding GABA. I do understand that process too. There is actually a product which was developed in Russia to get Gaba across the blood brain barrier - actually 2 products. They are Phenibut and Picamilion. Google them -they both use unique ways to get gaba into the brain. Read about them.

You pointed out an error in my former reply - I never meant to suggest taking dextroamphetamine alone. I should have stressed that they need to be taken together to have an effect. One causes the release of dopamine - the other stops the reuptake. Together they are beneficial - by themselves they arent

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Find one. Opiates have given me my life back. And it IS low dose. When they did the random drug test to be sure they were in my system, (so I wasn’t selling them) they didn’t even show up. They have to order a special test to detect levels that low.

Lyrica made me stumble. I ended up on a cane twice. I figured I was too young to be a fall risk.

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What opiates do you take? I have a gut feeling that using opiates might be the best answer for me.

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You can only give it a try. Good luck.

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My GP gave me Flexeril first, and it worked really well for the RLS. Then I had to stop using it when it was found that I have a left bundle branch block. Then my doc gave me Clonidine, and that has been working really well. My concern with Lyrica is that it causes augmentation, is hard and hard to come off of as I understand it, and it causes pretty significant weight gain. I was not willing to go with all of that. The other thing I am using to help me sleep both at the beginning of the night and in the middle of the night, is Bromelain capsules. They work pretty well too. Best luck in whatever you decide

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Lyrica does not cause augmentation. Like any drug, one may develop tolerance to it, thus requiring a higher dose. But tolerance is not augmentation.

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My apologies.. I read several studies, similar to this one:

medpagetoday.com/neurology/...

that said things like this:

Over the full 52-week study, during which the placebo-group was re-randomized to the three active drug treatments after 12 weeks, only 2.1% of those receiving pregabalin showed symptom worsening -- termed augmentation in the RLS literature -- compared with 7.7% of those taking high-dose pramipexole (P=0.001), the researchers reported in the Feb. 13 issue of the New England Journal of Medicine.

I tend to be one of those in the small percentage on a lot of medications that will have the bad reactions.

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No, my apologies! I was under the impression that the alpha-2-delta drugs did not share that problem at all. I was mistaken, and I appreciate the correction. Even though the rate of augmentation is lower than the DAs, its good to be aware of that.

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Someone on the forum, Alison7(?) the retired gp, maintains she augmented on pregabalin (brand name Lyrica). I tend to believe her. The odd chance is still a chance..... unfortunately.

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Thanks - My doc also offered me Mirapex and scared me even more - ha ha. So Clonidine and Bromelain it is... =)

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I am also one who gets the last of the reactions listed.

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Hi. I had RLS about 15 years ago. Went on requip. Caused a type of narcoleptic I fell asleep suddenly at around 3p caused a car accident. Found out the RLS caused by my cholesterol meds. So stopped them. No problem till last year (70) started with full body RS horrible horrible spasms and pain in back shoulders and of course legs.

Found caffeine sitting long periods driving tiredness can exacerbate it. Also have celiac disease so on a very limited diet. Caffe e is my one indulgence. Any soda ice tea etc make it worse. Take some melitonin at night if bad!!

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Hi crochetnany - That sounds really scary. My hubby has apnea too, and I have just recently talked him into getting the sleep study, and one of my biggest fears is that he would fall asleep at the wheel. Not yet, so fingers crossed. Here's wishing you sleep and health!

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Hey Yankster, roaming through this chat group, some or all of what I have read could have been from me. Yours too from most recent post. I have (had) augmented on EVERYTHING. Lyrica was recommended and I can't remember what part if at all insurance covers. I stopped reading the side effects of all the encyclopedia of meds I have taken until I have taken them. Lyrica is VERY expensive and it did NOTHING for me. Not sure if that is good or bad but at least don't need to tweak my budget to figure out how to buy it. As soon as I have the mental energy, will post my dismal fails this past week and my looking for a toy gun to shoot myself. I am beyond disappointed as I keep trying to be positive, doing my own research, reaching out. After being prescription drug free for at least 6 weeks, loosing my mind...last night at 4AM while still dancing with my legs, I took my old dosage of requip and 800 mg of ibuprofen, I finally fell soundly asleep at 5AM and woke around 9AM. MOre sleep than I have had in months. What is DAs that you mentioned? I am so with your "end of my rope." Everything in my life is wonderful and beautiful. I have never had so much of so much. Everything except me. I feel as though my life is being kidnapped and held for ransom . If I knew how much the ransom is I would pay it even if it were 3 dead chickens, 5 dozen roses and home made tomato juice.

Name the price and where to pay...will deliver. Is that you too. Nothing is OK in the middle of the night when legs are flying around from 11PM to 5:30 AM when I start searching for the toy gun. Oh I had promised my husband I would take at least one months worth of the latest prescription, METHADONE. It made ZERO affect. I have not yet tried heroine...I am actually happy the oxycodone did not work on me as the constipation is another trial. The side affects of the other drugs, which I augmented on, are more subtle but of course there. Not sure if this is good news, well relatively speaking. Since the requip worked last night, I may just go back to old meds and juggle them around. Will have longer time, I hope, to augment again. Anyone else doing that?

Need to go buy a new refrigerator today as our has turned into an inside out igloo.

Aunty Sioux

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Hi Anthiesioux - I am so sorry for where you are. I have managed with the Clonidine and Bromelain to control a lot of the RLS and at least get to sleep. If the apnea were corrected I might actually get some recuperating rest. Here's wishing you the best results possible and gentle hugs

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I’d been taking Lyrica for a few months my speech became slurry and had 2 ‘unexplained’ seizures, genuinely felt crap. The neurologist put my seizures down to the Lyrica, as soon as I stopped the medication I was fine, never again, but like has been said already it’s different for every person.

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Hi Vonnie - There are very few "one size fits all" anythings in the world, let alone in medication. It sounds like it was really good that you know what your body should and shouldn't do so you could stop it in time... Hopefully you are mostly straight now?

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i've ended up replying to Pam further down, but re anxiety etc, although pregabalin is also licensed for anxiety disorder I think it did something odd to my sense of perspective and ability to judge whether something was concerning or not so in fact i became more anxious. I think it wouldn't have happened if life had been straightforward - is it ever? - but when something was going on I found it hard to judge how serious it actually was

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Interesting comment Alison about not realizing how serious something is at the time you are going through it... Boy, how many times has that happened to me? Here's hoping you are doing well

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Everyone is different . For me gabapentin, lyrica, levodopa have no side effects .. others much so. For requips side effects were horrific .. others swear by it .

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Hi Svengolly - I have heard that about the Requip. My doc offered it to me originally for my RLS and I freaked when I read all of the side effects. It was very scary. But other people found Flexeril unacceptable, while I loved it.. We are all different and actually I love that =)

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