Does anyone successfully use ONLY an anti-convulsant?

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badnights
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Wed Feb 19, 2014 8:07 pm

Something that might be affecting your current state is that stopping ropinirole/Requip usually causes a temporary worsening of WED/RLS symptoms. Once that's over with, the gabapentin might be more effective. But still, as QyX said you're on a very low dose, not likely to help the WED mi=uch.

It is said that gabapentin is an effective treatment for WED/RLS, but if you look at the posts in this topic, no one who has posted so far uses it alone successfully. ( That doesn't mean it doesn't happen, just that the people doing tit are not posting here. But still, it makes me wonder just how effective it is)
Beth - Wishing you all restful sleep tonight
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Chipmunk
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Chipmunk » Thu Feb 20, 2014 5:45 pm

I just got an email from the WED Foundation that said that recent research showed that Lyrica (pregabalin) was just as effective as Mirapex but without the risk of making symptoms worse.
Study sheds light on treatment for Willis-Ekbom disease (restless legs syndrome): Pregabalin (Lyrica) found as effective as FDA-approved pramipexole (Mirapex) without causing the worsening of symptoms that commonly occurs with pramipexole.
Rochester, Minn. - February 20, 2014 – A large-scale study of treatment for Willis-Ekbom disease (restless legs syndrome, or WED/RLS) published February 14 in the New England Journal of Medicine shows that the drug pregabalin (Lyrica) controls symptoms as well as pramipexole (Mirapex), but with significantly lower incidence of augmentation. Augmentation is a worsening of symptoms with long-term use, and occurs in about one third of WED/RLS patients who take the intermediate-acting dopamine drugs pramipexole and ropinirole (Requip). Both pramipexole and ropinirole are FDA approved for treating WED/RLS and commonly used as first-line therapy.
“Over the long term, the most commonly used treatments for WED/RLS make a bad disease worse,” saysRichard P. Allen, PhD, who is first author of the report. Allen is an associate professor in the Department of Neurology at Johns Hopkins University past chair of the WED Foundation’s medical advisory board.
“This study is an important contribution to our knowledge of the treatment of a widespread and very serious medical condition,” said Karla Dzienkowski, executive director of the Willis-Ekbom Disease Foundation, headquartered in Rochester, Minn.
WED/RLS is a disease that produces an overwhelming evening and nighttime urge to move the legs. It wreaks havoc on sleep, disrupts quality of life, and is associated with increased risk of cardiovascular disease. Clinically significant WED/RLS affects from 2 to 3 percent of adults and progressively worsens over time.
While previous studies found that one third of patients became worse over three years of taking ropinirole and pramipexole, it was unclear whether this was caused by the drugs themselves or by natural worsening of symptoms over time.
The new study used a head-to-head comparison of two drugs at their usual doses for treating WED/RLS: Pramipexole is a drug that mimics dopamine in the brain and is FDA approved for treating WED/RLS. Pregabalin is a pain medication that is neither FDA approved for treating WED/RLS nor commonly used to manage the condition.
In the study, 719 patients received standard doses of either 0.25 or 0.5 mg pramipexole or 300 mg pregabalin. Both drugs were found equally effective in initially relieving WED/RLS symptoms, but after one year of treatment, pregabalin showed a better outcome.
Prior studies found that pramipexole and ropinirole (another dopamine mimic) deceptively provide effective initial treatment followed by an insidious worsening of the disease. This often results in very severe—even painful—symptoms that require a very difficult withdrawal from the medication. “What starts as an evening or nighttime disorder expands to affect the afternoon and even the entire day of some WED/RLS patients, totally disrupting life and the ability to work efficiently,” says Allen.
The new research found worsening of WED/RLS symptoms in only 1–2% of patients taking pregabalin—consistent with the rate of expected natural disease progression. In contrast, a dramatically higher rate of worsening symptoms occurred with pramipexole: 7–9%, mostly during the second half of the 12-month study.
The company producing pregabalin (sold as Lyrica) has not made plans to seek FDA approval for treating WED/RLS. The similar drug gabapentin enacarbil (sold as Horizant) was approved for treatment of WED/RLS in 2011.
Researchers from Pfizer, Massachusetts General Hospital in Boston, the Sleep Research Institute in Madrid, and Tampere University Hospital in Tampere, Finland, also contributed to the study.
Tracy

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badnights
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Thu Feb 20, 2014 11:51 pm

Super cool, Ann has posted a different summary of the same study at viewtopic.php?f=4&t=1922&p=73048#p73048
I wonder if those people will stick with Lyrica now that the trial is over? I wonder if Dr Allen plans to follow up with them.
Beth - Wishing you all restful sleep tonight
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Sojourner
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Sojourner » Sat Feb 22, 2014 6:29 am

Just responding to post title somewhate belatedly. I had a pretty good run on gabapentin for about 7 or 8 years. While I did have a script for vicodin I used it quite sparingly perhaps once/twice per month or less. So, I pretty much relied exclusivley on gabapentin. Got up to 2200 mg. which is pretty close to the upper limits from some of my readings. Unfortunately, the med has pretty much lost its effectiveness or has not been able to keep up with the worsening of the WED this past year. I have wondered about augmentation. Anyway, will probably discuss tapering off to see it makes any difference. Did try substituting with Lyrica but did not notice a difference. Still have my vicodin script and rely on that much more in recent months.
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby cornelia » Sat Feb 22, 2014 11:41 am

It could well be just progression of the disease after all these years. It is a miracle you did so well on Gabapentin.

Corrie

badnights
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Sun Feb 23, 2014 4:28 am

sojourner
You did get a good long run from it; thanks for posting here, I am so curious about the real-life effectiveness of the anti-convulsants, and it's good to hear from someone it was genuinely effective for. Are you back here posting because the symptoms are getting worse again?

I agree with Corrie, probably it's the natural progression, and you might need a different class of medication. Although I suppose you could try Horizant, maybe because it's long-acting you wouldn't need as much, but I doubt the official recommended max would be sufficient.

If I were you, I would discuss changing, not tapering, with your doctor. If you tapered, what would you use to cover your symptoms while tapering? And afterward? I think probably you should discuss changing meds.
Beth - Wishing you all restful sleep tonight
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Sojourner
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Sojourner » Sun Feb 23, 2014 6:26 am

Guess I was using the concept of tapering with the end result being that I would eliminate the gabapentin as my main med. Along the way, though, if my symptoms become more severe than perhaps the gabapentin is helping more than I think and maybe keeping my WED from even being more pronounced. If that's the case then maybe I should keep it as part of some larger cocktail. As mentioned, I do have a script for Vicodin and would use that to fill the void if I taper off the gabapentin. Have discussed the the Vidcodin issue with my physician and she is appropriately cautious but also relatively comfortable prescribing to meet my needs. Unfortunately, while I have had a good run with the gabapentin, nothing lasts forever and back to the drawing board. Quite some time ago, I had pretty good success with Sinemet which lasted for about 3 years. I may want to think about recycling that approach.

I have good friends who live in Colarado and am thinking of an extended visit there to perhaps give marijuana a ride and see what it does for me.

Significant peripheral issues and collateral damage have effected my presence on the board. I am saddened that WED continues to impact so many new and familiar names on the discussion board. I admire and am grateful for the kindness, knowledge, and perseverance of contributors/moderators such as ViewsAskew, PolarBear, badnights as well as many others who have helped me and other kindred spirits in our journey to find peace. I wish that peace for them and all who visit here.
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby ViewsAskew » Sun Feb 23, 2014 7:22 am

So sorry to hear about other issues that have impacted you.

Did you augment on the Sinemet or stop it for other reasons? If you augmented, it's unlikely it would work again, but you might be able to alternate pramipexole or ropinerole for a few weeks, with Vicoden for a weekend or several days. This faster rotation seems to prevent a lot of issues that occur when we take one thing for a long time.
Ann - Take what you need, leave the rest

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badnights
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Sun Feb 23, 2014 7:38 am

I am saddened that WED continues to impact so many new and familiar names on the discussion board. I admire and am grateful for the kindness, knowledge, and perseverance of contributors/moderators such as ViewsAskew, PolarBear, badnights as well as many others who have helped me and other kindred spirits in our journey to find peace. I wish that peace for them and all who visit here.
We help each other so much here, I hope everyone feels at home and comfortable with making posts if they want to.

It's sad indeed to see the continuing problems, but heartening that more and more people are becoming aware of WED, and I hope, more and more physicians are becoming aware of the huge problem of augmentation.

I like your idea of adding something to the gabapentin. Since you're already taking a bit of Vicodin, it makes sense to take it on a more regular basis. Or preferably, plain hydrocodone without the acetominophen. An alternative would be a longer-acting opioid, but I don't think they make long-acting versions of the less-potent ones like hydrocodone.

I would be cautious of the Sinemet, for obvious reason (agree with Views), but it is an option. I took a continuous-release version of Sinemet as a nightly supplement to my hydromorphone for half a year without apparent problem, and I still take a regualr Sinemet occasionally when I need fast relief (but not often - never ever 3 days in a row). One of the other DAs might be a better option, since they have lower augmentation rates. Have you heard of the Neupro patch? It's another idea that might work for you, seems to have the lowest augmentatino rate but hasn't been out long enough to be super certain.
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Polar Bear » Sun Feb 23, 2014 5:50 pm

Sojourner - I work on a cocktail of ropinerole, tramadol and cocodamol 30/500 which more or less covers my 24/7 symptoms and keeps me at the lower end of the opiate list. As always, keeping the medication ahead of the symptoms. A sufferer who finds one medication to work on its own is indeed fortunate. Within my cocktail my ropinerole is at what used to be considered the max, and is now considered to be way too high.

I also would be very wary of the Sinemet - although you did have previous success with it - but I think the augmentation rate with Sinemet is around 80%. (stand to be corrected).

Mind you, I have a journey of 18 hours coming up in a few weeks, UK to NW USA, and it has crossed my mind about asking my GP for a few Sinemet just to help cover the flights because of its efficient speedy action.

And yes, the peripheral issues continue to happen and have to be dealt with, as if we don't have enough on our plate. I wish you well.
Betty
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Anyone successfully use an anti-convulsant & no other WED/RLS meds?

Postby badnights » Mon Mar 13, 2017 6:34 am

I have re-worded this and revived it, because I am still curious about this.

The question is, does anyone successfully use an anti-convulsant for WED/RLS and no other RLS/WED medication? In other words, the only medication you take for WED is an anti-convulsant, and by itself, it controls the symptoms.

So far, only chipmunk.
Beth - Wishing you all restful sleep tonight
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legsbestill
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby legsbestill » Mon Mar 13, 2017 5:44 pm

I have often wondered this also; I sometimes look at a UK rls forum (healthunlocked) and I think there are a few on there who use only anti-convulsants.

Pregabalin didn't work at all for me as a monotherapy but looking through this thread maybe I was taking too low a dose at 300 mg. However, my memory is it caused my mood to plummet when I was taking it at this level. I reintroduced it more recently to deal with nocturnal alerting but was afraid to go too high - think the highest dose I was taking was 200mg. It seemed to work for a while overcoming alerting and then it stopped causing drowsiness at night and only made me feel sort of 'druggy' the following day so I cut it out again.

My search for something that helps with persistent and vivid nocturnal alerting continues. Marijuana baked into cookies is VERY effective but I don't like taking it every night. I am hoping to find something I can alternate with the marijuana. As I read it, the JH research implicates excessive glutamate production. I wonder if there is are diet fixes to help with glutamate production?

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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Wed Mar 15, 2017 9:40 am

I doubt a diet would work to fix the glutamate problem, which could lie with any of the many intra- and extracellular systems from gut to brain that deal with glutamate and its precursors. But oddly, when I first mentioned the glutamate studies to my GP, she wondered if I should restrict my diet (eg. no MSG) (which I didn't use anyway).

I take 75 mg pregabalin 5 days out of 7 - I don't take it Wed or Sun - and I've been doing this for about a year. So far, it still makes me sleepy, perhaps because I refuse to take it daily. The refusal is not to fend off tolerance, though; it's because gabapentin made me severely depressed, and I am very leery of pregabalin doing the same thing.

Maybe you can alternate marijuana with pregabalin in some way? A week of one then a week of the other?
Beth - Wishing you all restful sleep tonight
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SLEEPY ANGEL
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby SLEEPY ANGEL » Wed Mar 15, 2017 10:02 pm

badnights---
It is so fascinating to read how medications affect different people in such a VARIETY of ways. I take 400mg Gabapentin every night and it helps me feel sleepy/relaxed for the night; I have not had ANY depression from taking it. I've never taken Pregabalen--- so can't say what it would be like for you; and, of course, you and I don't have the same "feelings" when on Gabapentin, so who knows? Maybe Pregabalen would depress you?

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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Thu Mar 16, 2017 6:55 am

A small percentage of people get moody and depressed from some of the anti-convulsants. There is now a warning with gabapentin that it can cause suicidal ideation, after a lawsuit brought about following a number of deaths. Apparently if a person is affected that way by one anti-convulsant, they should be cautious when trying another, but it does not necessarily mean the other will affect them the same way. So I am being cautious.

It's important for us all to realize that each of us reacts in our own specific way to each medication. For one person, hydrocodone can cause vomiting and dizziness; for another it might have no side effects; yet the second person might get blurry vision and tinnitus from one medication that the first person takes without a problem.
Beth - Wishing you all restful sleep tonight
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