horizont (gabapentin release ) - Restless Legs Syn...

Restless Legs Syndrome

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horizont (gabapentin release )

Dark71 profile image
25 Replies

hi there,

I’m currently taking 100mg of ropinarole and 1200mg of gabapentin every night. I just got a prescription for 600mg (nightly) of horizont. Does anyone have any advice on how to integrate this new medication into my routine. Do I need to come off of ropinarole first? Sorry, I’m sure someone answered this question for me before.

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Dark71 profile image
Dark71
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25 Replies
Madlegs1 profile image
Madlegs1

The Horizant is presumably to replace the Gabapentin.( It is a form of Gabapentin formulated to be absorbed more effectively by the body)

Hence the lower dose.

Do not stop taking the Ropinerol without medical advice.

You really should be asking this question off your medical practitioner.

Dark71 profile image
Dark71 in reply to Madlegs1

thank you yes! Unfortunately my practitioner didn’t know anything about this. I am planning on seeing a neurologist so maybe I will wait.

Madlegs1 profile image
Madlegs1 in reply to Dark71

Why did he/ she prescribe it?

SueJohnson profile image
SueJohnson

Madlegs1 gave you the correct answer. Unless you are augmenting on ropinirole there is no reason to come off it.

Dark71 profile image
Dark71

well it doesn’t seem to be working anymore. Plus, I heard the horizont works better. Maybe I will wait, seems weird to take three different medications.

ChrisColumbus profile image
ChrisColumbus in reply to Dark71

Aren't Madlegs1 and SueJohnson suggesting you stay on ropinirole for the time being but replace the gabapentin with gabapentin enacarbil (Horizant)?

Dark71 profile image
Dark71 in reply to ChrisColumbus

yes, this is what they said but there is conflicting information out there.

SueJohnson profile image
SueJohnson in reply to Dark71

What is the conflicting information?

ChrisColumbus profile image
ChrisColumbus in reply to Dark71

I've never taken any of these drugs for RLS so have no direct experience....

Often the advice here is to come off ropinirole very slowly and switch entirely to one form or another of gabapentin, but then that the gabapentin won't start working fully until after you're completely off the ropinirole.

But others have said that they have no problem taking both ropinirole and gabapentin together, as in this thread:

healthunlocked.com/rlsuk/po...

Presumably your doctor thinks that ropinirole and gabapentin enacarbil (Horizant) together will work better than ropinirole and straight gabapentin or than gabapentin on its own? Or they would have advised you to start slowly weaning off the ropinirole... Unless that's going to be their next step... Clarify with your doctor.

SueJohnson profile image
SueJohnson in reply to Dark71

If you decide to come off the ropinirole, post back here and we can give you some advice. Don't just quit cold turkey.

Joolsg profile image
Joolsg

Presume you mean 1mg of Ropinirole?If Are 1mg Rop and 1200mg gabapentin working? Often gabapentin doesn't work until you're off Ropinirole completely.

Dark71 profile image
Dark71 in reply to Joolsg

yes, that’s what I mean

Joolsg profile image
Joolsg in reply to Dark71

How long have you been taking Ropinirole? Make sure you read all you can about Augmentation as it creeps up on you and soon you can't sit still on car journeys.

Irmajs profile image
Irmajs

If your RLS isn’t getting any better and your dr keeps adding more meds then you are probably augmenting from the ropinirole.

rls.org/treatment/managing-...

In that case, yes you need to come off the ropinirole but should do it slowly with a doctor. Unfortunately many neurologists also don’t know much about RLS. My first one kept upping my dose of ropinirole as my symptoms got worse. I found out about augmentation from the webpage above. I did take myself off of it but knew enough to wean myself off slowly. My second neurologist still wasn’t a lot of help. Good luck.

SkyCop profile image
SkyCop

Horizant is the new form of gabapentin. Is the Ropinerole causing you augmentation? Have they checked your ferritin?

Dark71 profile image
Dark71 in reply to SkyCop

no, not yet. Don’t have a do for yet. Changed insurance so I’m just waiting…..

discgolfrules profile image
discgolfrules

I take gabapentin with ropinirole. They put me on it to back off ropinirole. Alone it does nothing. 100 mg of ropinirole is not correct, probably meant 1 mg, but I am assuming. Do not just stop ropinirole, you will end up in the crazy house. Been taking ropinirole for 15 years now. Works great, despite the nausea, until I was on 4mg for about a year, then the screaming voices started. At first I had no idea what it was, thought was just neighbors fighting. Then got louder and louder, then began hearing like 5 threatening voices, saying all kinds of horrible stuff, saying they were gonna kill my family, terrifyting stuff. backing down slowly is no picnic either. The screaming just dosen't stop, It gets softer and less frequent, on 3 mg now and it's been 3 months since got out of psyvhiatric hospital. And still am having issues, just not as intense, it is exhausting though constanly having to focus on what is here in front of me, because if I let my mind wander, then the screaming begins. Very important, if anyone is having issues with ropinirole Do Not Tell the Hospital you are hearing things. They will not treat you medically in a psychiatric hospital. They will take you off ropinirole cold turkey and give you anti-psychotics. They gave me thorazine while ropinirole was still in my system, that pushed to a full psychotic break, and on top pf that my rls was keeping me up and I had to walk for 7 days straight with no sleep until they had to sedate me because I dismantled the room and made weapons and barricaded myself in my room. They tried to push the door open, but I had it blocked sitting on the floor with my back to it, I have really strong legs. Finally they coaxed me out with one of the nurses I trusted, then took 12 of them to bring me to the padded room to give me 3 needles. Now I did not fight them, I didnt want to hurt anyone, I just stopped them from moving me. Then it got so ridiculous that someone was gonna get hurt because their were too many people in a pile trying to move me, so I said ok ok I don't want anyone to get hurt so I'm gonna stop resisting, then I did and the pressure changed like a tug of warand we all went forward. Then they sedated me and I slept for 2 days they said. When I woke up, I was completely clear, everything stopped. But they wouldn't give me any medication for my RLS or PArkinsons so I was awake the rest of the days, which was five, until they let me out, that took about a month. Then could not sleep when out, so my doctor put me back on 2 mg. Works good for a bit, then dosen't, then bumped me up to 3, worked for a bit, then not, then back up to 4, works, things are ok,. then oh no it's back and it's angrier then before. This repeats two more times, minus the cold turkey, and taking a lower dose at hospital. Now I know the psychiatric hospital is not the place to be, they don't care about treating you, they are a revolving door and are their just to make sure you don't hurt yourself or someone else, you will not get help at the psychiatric hospital, stay away, anyone who is having an issue. And a warning to those who are increasing their ropinirole.

SueJohnson profile image
SueJohnson in reply to discgolfrules

WOW !!!

discgolfrules profile image
discgolfrules in reply to SueJohnson

wow good or wow bad?

SueJohnson profile image
SueJohnson in reply to discgolfrules

What they did to you.

JakeRLS profile image
JakeRLS in reply to discgolfrules

What an unbelievably horrible story. I'm so sorry you went through that. As a side note, if the story were not true it would have been funny. You have a very humorous way of presenting the facts. I hope you're doing much better.

discgolfrules profile image
discgolfrules in reply to JakeRLS

thank you jake. It's getting better, slowly. Very true, but not real. In other words, it happened, still is happening. But doing it this way, slowly is much more tolerable, just alot slower. Going cold turkey, the delusions become louder and louder, so much that it even overwhelms my own inner voice. Gets so loud that you start to live in that world and react to false stimuli, then full break. I am not ready to tell the story yet. But it is long and involves childhood bullies, old friends, peruvian assasins, the CIA, of course, hospital clowns, aliens and billionaires. The crazy part is each time, this is round 4. The narrative morphs and mutates. There were moments of pure terror, but their were also funny moments, and even some wins here and there, but mostly terror. I want to share the story in hopes in can help others who are new to RLS and dopamine agonists.

Rph5 profile image
Rph5

I just got on horizent and it has worked well. You can take with ropinirole but I’m on 1.5 mg. I cut down from 2 mg. 100mg sounds like a lot . You shouldn’t need 2 gabapentins BUT you should always consult your dr or NP. I take Horizent between 5 and 6 pm and don’t have any “hangover “ the next day.

Dark71 profile image
Dark71

no no, I’m on 1mg of ropinarole. My mistake:) - I get it, do not come off of the drug cold turkey. I’m really sorry for everything you are going through.

discgolfrules profile image
discgolfrules in reply to Dark71

Thank you

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