Does anyone successfully use ONLY an anti-convulsant?

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

Postby ViewsAskew » Thu Aug 01, 2013 8:08 am

I wonder if the Foundation has ever done a study of its members, asking what they had tried, what the results were and so on. it would rely on self-reporting, so there would be some concerns regarding accuracy, but it could be enlightening.
Ann - Take what you need, leave the rest

Managing Your RLS

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

Postby Polar Bear » Thu Aug 01, 2013 10:20 pm

Yes, although it would not be fully accurate it may be 'accurate enough' to show tendencies.
Betty
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Chipmunk
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Chipmunk » Sat Aug 03, 2013 9:35 pm

The study itself would be relatively simple to design, the problem would be finding the funding and a researcher with enough clout to get the WED Foundation to open up its member list.

Honestly, I would think Dr. B's patient records would be enough to yield a pattern if there were one, but he has such a large clinical practice to maintain that he would not have the needed time. If only I could do my Ph.D on "Efficacy of Pharmaceutical Treatment Plans in WED Patients" :lol:
Tracy

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

Postby badnights » Sun Aug 04, 2013 4:55 am

yes! I was thinking that as I read your post. Dr B, Dr Earley or Allen, any one of them would have enough data in their files to make it a useful research project for a student.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Caitrin
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Caitrin » Tue Aug 06, 2013 8:45 pm

I have been taking 1200 mg Gabapentin, occasionally 1500 mg, for several yrs, together with one carbidopa/levodopa 50/200 CR tab both bedtime and 1 mg clonazepam twice nightly for several years for severe WED. Tried to taper the latter drug without success but my MD is okay with this. The first two meds completely relieve my WED symptoms and I have had no augmentation with any of these. :)

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

Postby badnights » Mon Aug 19, 2013 2:13 pm

Interesting. Have you ever tried to stop the levo-carbidopa CR ? I took it for months alongside my hydromorph contin, without apparent ill effect. It seemed to have no beneficial effect either, though, so I stopped it. I still use levo-carbidopa regular (not CR) for occasional breakthroughs, because it's fast-acting. If I take it every day, I start to augment.

Clonazepam can be very hard to stop. 2 mg seems a high dose. Why did you try to stop, because of daytime grogginess?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Caitrin
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby Caitrin » Tue Sep 24, 2013 1:51 pm

I have decreased the dosage of levo-carbidopa from the current level but the higher dose works better for me (50-200 mg). I've had no augmentation with this drug after 20 years. It was my (former) physician who sent me to a nurse practitioner to taper the clonazepam. I was indeed disappointed that he referred me to a psychologist. After several sessions without success the practitioner decided that it was unnecessary to taper the med as I had never increased the dose after 20 years. My new doctor treats me for my pulmonary condition as well as the sleep medicine and has not changed my meds for the former.

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

Postby badnights » Mon Oct 21, 2013 4:59 am

Well thank goodness the needless experiment to stop your meds has ended. Impressive that the dose has not changed in 20 years.

I am happy to hear finally from someone who hasn't augmented on LC. I usually only hear from the 75% (or more) who do augment; nothing from the people who don't.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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ritomko
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Re: Does anyone successfully use ONLY an anti-convulsant?

Postby ritomko » Sat Nov 16, 2013 10:29 am

Just taking requip

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

Postby Rustsmith » Sat Nov 16, 2013 7:20 pm

This thread predates when I came onboard, but since it has been bumped to the top ...

My WED increased in severity about the same time that I started taking 50 -100 mg of topiramate for migraines. I lasted 4 yrs on topiramate until my inability to recall proper nouns became unacceptable. My neurologist switched me to zonisamide, which addressed the vocabulary problem, but may be causing other side effect problems.

I am still in the early evaluation stages of treating my WED. But, I can say that neither topiramate nor zonisamide worked to address my WED (but they did help the migraines).

The comments by Badnights about how the anticonvulsants may address the glutamate side of WED were very interesting. I do not know whether topiramate or zonisamide have the specific calcium channel blocking characteristics as found in some of the other products listed. But from my standpoint, I have a suspicion that my WED has more to do with a combination of dopamine-histamine interaction rather than the dopamine-glutamate combination being studied at Johns Hopkins.

I should also provide the comment that my WED currently does not include any pain or extra sensations (but have in the past). "All" that I experience is the overwhelming urge to move in my legs, arms and torso as well as numerous PLMs.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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

Postby ViewsAskew » Sun Nov 17, 2013 3:42 am

Here's my take. I have assumed that the JH work is looking at glutamate at what keeps us awake, not what creates the urge. Both are charaterstics, but very different. The dopamine seems to address the urge, but many of us are still wired/awake. As I understood it, the glutamate connection was only related to this aspect. I admit to not having reread the study before posting this....and my memory is NOT as it used to be, so I could be forgetting something or misremebering completely!
Ann - Take what you need, leave the rest



Managing Your RLS



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

Postby QyX » Thu Dec 12, 2013 3:11 am

I also think that glutamate my play role in WED/RLS. This is why we added Lamotrigine to my medication.

Many people get activated on Lamotrigine but in my case I was sleeping better from day 1.

WED/RLS is a very complex disorder and it looks like that in many cases you can't catch all the symptoms with one drug or that a drug has to many side effects on given dose. So reducing the dose and adding a 2nd drug can improve the situation a lot and reduce side effects.

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

Postby saptree » Sun Feb 09, 2014 8:42 am

So... One should not use gabapentin as a replacement for Requip? I'm guessing not. I'm on night 2 of just taking 100mg of gabapentin, and no Requip. This is also night 2 of my restless legs returning. Requip had it under control. I'm suppose to be trying gabapentin for anxiety and migraine. Can I add back the Requip? I'm being tortured at the moment.

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

Postby ViewsAskew » Sun Feb 09, 2014 9:17 am

saptree wrote:So... One should not use gabapentin as a replacement for Requip? I'm guessing not. I'm on night 2 of just taking 100mg of gabapentin, and no Requip. This is also night 2 of my restless legs returning. Requip had it under control. I'm suppose to be trying gabapentin for anxiety and migraine. Can I add back the Requip? I'm being tortured at the moment.


You absolutely can - it doesn't work for everyone, though, to control the WED/RLS. You need a high enough dose, first, and it often takes more than 100 mg. Most doctors have you increase it slowly over a couple of weeks until you get to the dose that works. That means you may have many nights without coverage until you get to that dose.

But, why did your doctor want you to stop the ropinerole/Requip? Is there any reason you can't use both according to him or her? The dose of gabapentin for WED is 100-900 mg up to 3 times a day - so some people take up to 2700 mg a day for WED. How much did your doctor think you would need to take?
Ann - Take what you need, leave the rest



Managing Your RLS



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.

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

Postby QyX » Sun Feb 09, 2014 12:31 pm

But, why did your doctor want you to stop the ropinerole/Requip? Is there any reason you can't use both according to him or her? The dose of gabapentin for WED is 100-900 mg up to 3 times a day - so some people take up to 2700 mg a day for WED. How much did your doctor think you would need to take?


Yes. I wanted to ask the same.

I tried Gabapentin a couple of weeks ago. I was able to reduce Morphine by about 70% but Gabapentin also had a stimulating/activating effect on me. I had the same issue with Lyrica/Pregabaline.

My Gabapentin dose was 900 mg/day.

100 mg of Gabapentin daily is like nothing.

300 mg per day is a normal starting dose here in Germany and it can be increased to 900 mg within 3 days, each day 300 mg more.

There is a lot of evidence who supports that Gabapentin helps dealing with RLS but unfortunately Gabapentin can come with a lots of side effects.

Gabapentin can also be an effective drug to treat anxiety and neuropathic pain.


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