Does anyone successfully use ONLY an anti-convulsant?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Does anyone successfully use ONLY an anti-convulsant?

Postby badnights » Tue Jul 23, 2013 4:22 am

No one much posts about this. Is anyone having success taking no other drugs except an anti-convulsant? Eg. Only gabapentin/Neurontin? Only pregabalin/Lyrica? Only Horizant? Only another anti-convulsant? Is your WED severe, moderate, or mild? Daily or intermittent?

(edited by viewsaskew on 7/27)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
Moderator
Posts: 14794
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Does anyone here successfully use only an anti-convulsan

Postby ViewsAskew » Tue Jul 23, 2013 6:16 am

Not I - I can say that Dr B made it sound as if he is getting good results with many patients on Horizant, even ones who didn't have the same success on other anti-convulsants. But, that is me inferring based on what he said during my last appointment.
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.

cornelia

Re: Does anyone here successfully use only an anti-convulsan

Postby cornelia » Tue Jul 23, 2013 11:00 am

None at all, but they work as a sleeping aid.

I find it remarkable too that dr B is having good results. I am a bit concerned that they might become first choice meds, for the severe patients.

I would like to try Horizant, but we don't have it in Europe (yet?). But I am very sceptical that it will help a lot.

Corrie

ViewsAskew
Moderator
Posts: 14794
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Does anyone here successfully use only an anti-convulsan

Postby ViewsAskew » Tue Jul 23, 2013 2:30 pm

cornelia wrote:None at all, but they work as a sleeping aid.

I find it remarkable too that dr B is having good results. I am a bit concerned that they might become first choice meds, for the severe patients.

I would like to try Horizant, but we don't have it in Europe (yet?). But I am very sceptical that it will help a lot.

Corrie


Corrie, I felt like you. I had no luck with any others in that category - have used gabapentin, pregabilin, and topiramate. So, I wasn't hopeful at all about Horizant - gabapentin encarbil. And, it didn't work at all for me. Dr B seemed to think that if I'd increased it one more time, I might have luck. I asked how likely that was given that was already taking 1800 mg and the suggested dosage is 600 mg. He thought there still was a chance that it would help. Given that the research says that 1200 mg didn't offer any additional benefit but greatly increased the chances of adverse reactions, I'm very skeptical. I stopped it anyway because I was busy with this contract job and could barely function I was so tired while taking it.

I truly think it will be discovered that it works best for a specific genotype of WED/RLS and that some people who find benefit also have neuropathy and the neuropathy sets off the WED. When the neuropathic pain is controlled, the WED is less simply because it's not being activated. But, that's just a hypothesis of mine.

I have also wondered if this category would become first choice meds. I honestly don't know if it matters. Until they figure out what causes WED and come up with something specifically created to resolve it, none of what we take will be an optimal choice. All come with potential downsides and issues.
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.

Chipmunk
Moderator
Posts: 655
Joined: Thu Mar 03, 2011 10:44 pm
Location: Madison, WI

Re: Does anyone here successfully use only an anti-convulsan

Postby Chipmunk » Tue Jul 23, 2013 7:18 pm

I use Lamictal, which is an anti-convulsant (epilepsy) drug. It works very well for me (knock on wood!). I take 100 mg at night.

I have the non-painful type of WED. It feels like electrical buzzing and I just can't stop moving my legs. I also feel very restless and agitated in my whole body, not just my legs.

I agree with Ann that WED has many different causes and that what works for one won't necessarily work for another, which is what makes this disease so frustrating!

FWIW, here are the meds I tried (I'm just going to include the classes for simplicity's sake even though I tried more than one in every category):

1. Benzos. These did nothing for the WED but sedated me through it. I still woke up a bazillion times a night, I just didn't remember it in the morning. Still exhausted.

2. DA's. I augmented on Mirapex within 3 days. Tried another and the second night my WED was the worst it had ever been. Never taking one again if I can help it.

3. Opiods. Codeine didn't help at all, and I was hesitant to try a stronger one both because of my severe vomiting reaction to opiods, and the fact that I have young children to whom I may need to tend during the night.

4. Anti-convulsants.
Gabapentin worked amazingly for me for the WED symptoms. Unfortunately it acted as a diuretic during the night and I was usually up three times a night to use the bathroom. I gave it a month and tried reducing fluids, etc., but nothing helped. The doctor said it was being prone that triggered it, which is why it didn't have the same effect during the day.
Lamotrigine (Lamictal) was next. It works almost as well as the gabapentin. Next to try would be Lyrica or Horizant.
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

cornelia

Re: Does anyone here successfully use only an anti-convulsan

Postby cornelia » Wed Jul 24, 2013 10:40 am

I read somewhere that if further research shows again that something is wrong with our glutamate levels that anti-convulsants could be the answer. I don't know if we will be very pleased when that happens.

Corrie

Chipmunk
Moderator
Posts: 655
Joined: Thu Mar 03, 2011 10:44 pm
Location: Madison, WI

Re: Does anyone here successfully use only an anti-convulsan

Postby Chipmunk » Wed Jul 24, 2013 4:58 pm

Corrie, could you elaborate?
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

veldon7

Re: Does anyone here successfully use only an anti-convulsan

Postby veldon7 » Wed Jul 24, 2013 11:53 pm

I take Gabapentin 100 mg in the evening and Mirapex .25 to .50 for WED evening to bedtime, and Topiramate 100 mg for Migraine. The Neuro. said to take two of the Gabapentin 100 mg at dinner and 100 mg at bedtime, but I get pretty tired with all the meds I have to take, so right now I only take 100 mg, it works for the WED for a few hours, but then I usually have to take at least .25 of the Mirapex with it. Neuro. said I can take up to 1800mg of Gabapentin, but it makes me too tired for that. I think you would have to take a lot of it by itself for it to work. I think the Topiramate (anti convulsant) helps, but I don't think it would work without the Mirapex. :(

cornelia

Re: Does anyone here successfully use only an anti-convulsan

Postby cornelia » Thu Jul 25, 2013 11:21 am

I take Neurontin 900 mg bedtime. In my view it does nothing for my RLS but it makes me sleepy so I actually use it as a sleepmed.

I learned accidentily that when I take 1 pill in the afternoon on days that I have almost no mental energy it gives me that energy enough to be able to function a bit. Weird! I never could do that when I was at work because Neurontin takes concentration away and I feel a bit drunken but now I can.

Corrie

QyX
Posts: 316
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Does anyone here successfully use only an anti-convulsan

Postby QyX » Sat Jul 27, 2013 11:22 am

Yes, I do (Clonazepam / Klonopin). In Germany it is only approved as an anticonvulsant.

ViewsAskew
Moderator
Posts: 14794
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Does anyone here successfully use only an anti-convulsan

Postby ViewsAskew » Sat Jul 27, 2013 6:36 pm

So far, everyone is taking is in combination with something else, except Chipmunk.

Interesting.
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.

Chipmunk
Moderator
Posts: 655
Joined: Thu Mar 03, 2011 10:44 pm
Location: Madison, WI

Re: Does anyone here successfully use only an anti-convulsan

Postby Chipmunk » Sun Jul 28, 2013 3:25 am

ViewsAskew wrote:So far, everyone is taking is in combination with something else, except Chipmunk.

Interesting.


Story of my life....

I probably would take something else except nothing else works. Although the longer I am on the Lamictal, the better it works.
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 14794
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Does anyone here successfully use only an anti-convulsan

Postby ViewsAskew » Sun Jul 28, 2013 10:25 am

Chipmunk wrote:
ViewsAskew wrote:So far, everyone is taking is in combination with something else, except Chipmunk.

Interesting.


Story of my life....

I probably would take something else except nothing else works. Although the longer I am on the Lamictal, the better it works.


I guarantee you I'd try anything if I needed to :-). Since I've failed 3 in this class, I'm hesitant to try another. The only reason I might is because you have the creepy-crawly electrical version of WED, like I do, rather than the painful one, so it clearly does work for that, for at least some of us.
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.

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

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

Postby badnights » Thu Aug 01, 2013 6:09 am

I read somewhere that if further research shows again that something is wrong with our glutamate levels that anti-convulsants could be the answer. I don't know if we will be very pleased when that happens.

Corrie

Corrie, could you elaborate?
Tracy


The Johns Hopkins group decided to study glutamate levels for a number of reasons, one being that the anti-convulsants that seem to work for RLS/WED affect glutamate release (by acting on a certain type of calcium channel)

From the proposal for the second (ongoing) study: "Drugs that reduce glutamate activation reduce RLS symptoms. Gabapentin enacarbil and pregabalin are both considered to have their primary effects by acting on the apha-2-delta calcium channel to reduce glutamate release.....These drugs work with types 1 and 2 of alpha-2-delta channels. Type 1 is abundant in the cortex and type 2 in areas modulating thalamic activity. Their glutamate reduction is thus in areas of interest for this proposal. "
"Humans have ascending [dopaminergic] input into the [glutamate] cortical neurons and also into the thalamus as well as the basal ganglia. These are some possible points of interaction. "

Another interesting observation "At the dose range used for RLS methadone’s action includes NMDA receptor antagonism...... the combined results indicate [that] reducing activation of the NMDA [glutamatergic] receptor may significantly reduce RLS symptoms."

Despite my excitement about this study - which is mainly because they're seeking the cause of the hyper-alertness - I have reservations about how effective a treatment that ultimately derives from their studies will be for me, because the anti-convulsants have not been very effective for me. But I am hoping their research will uncover something deeper, that WILL be relevant for the type of WED that I have.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

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

Postby badnights » Thu Aug 01, 2013 6:12 am

So far, everyone is taking is in combination with something else, except Chipmunk.

Interesting.


I wish more people would reply. Helllooo everyone? :( These few answers are not statistically revealing.

I wish Dr B and other doctors, eg. Allen and Earley, would publish a synopsis of meds used by their patients, efficacy, duration, etc.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 2 guests