Horizant: Will taking horizant help... - Restless Legs Syn...

Restless Legs Syndrome

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Horizant

Woody4 profile image
Woody4
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Will taking horizant help with augmenting?? Any good or bad info on horizant is welcome.

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Woody4 profile image
Woody4
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34 Replies
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Madlegs1 profile image
Madlegs1

No ,it won't help with augmentation.

It is essentially Gabapentin made in such a way that it is processed more efficiently by the body, which means more of the essential ingredient gets to work better.

It should help relieve the RLS eventually, but not the withdrawals.

Good luck.

Woody4 profile image
Woody4β€’ in reply toMadlegs1

Thanks. I think I was told this on here before but I wasn’t sure.

Elffindoe profile image
Elffindoe

NO and YES.

NO If you're suffering augmentation now. then as Madlegs says taking horizant is not really going to help relieve augmentation.

If you are suffering augmentation then I assume you're currently taking a dopamine agonist, (DA), pramipexole, ropinirole or rotigotine. In which case the most effective treatment is to wean off the DA.

YES You can replace the DA with horizant. Horizant ia FDA approved for RLS and is the best gabapentinoid for RLS. It's also the most expensive. Horizant has little or no risk of augmentation.

If you aren't currently taking any medication, especially a DA then you can't really be suffering augmentation.

My conclusion is, based solely on what you write is to wean off any current medication and replace it with a gabapentinoid, Neurontin, Lyrica or Horizant.

Woody4 profile image
Woody4β€’ in reply toElffindoe

I was thinking I had been told that by one of you. I’m taking gabapentin 300 evenings, then 600 before bed and .125 pramipexole. It seems the pram doesn’t want to let go. To a degree splitting the gaba into 2 doses, 300 then 600, is similar to taking horizant once.

Elffindoe profile image
Elffindoeβ€’ in reply toWoody4

Hi, and sorry I can't always remember what I've written and to whom.

Taking gabapentin as you do is not quite the same as horizant which has a longer lasting effect.

In any event neither is going to help with augmentation.

The best option is to stop the pramipexole.

Reduce to half a tablet for two weeks. Then stop.

You can reduce withdrawals by cutting tablets on quarters.

Take 3 quarters for 2 weeks, then a half for 2 weeks, then a quarter for 2 weeks, then none.

Ask your doctor for codeine or tramadol and/or a benzodiazepine. Failing that use over the counter acetominophen and codeine.

Keep taking gabapentin.

GET OFF pramipexole whatever it takes.

Woody4 profile image
Woody4β€’ in reply toElffindoe

To start taking the horizant it will cost me $40 a month. Gaba is free. Is it worth it, one on one.

Elffindoe profile image
Elffindoeβ€’ in reply toWoody4

I thought horizant was more expensive than that.

I take gabapentin. I'm happy with it. I suffered augmentation from pramipexole before that. The gabapentin made no difference to it.

I stopped the pramipexole and the augmentation disappeared.

It's up to you.

It still won't solve your problem.

Woody4 profile image
Woody4β€’ in reply toElffindoe

It’s through some program they have set up with pharmacies. I called a pharmacy and through them I can get it for $40 a month

Elffindoe profile image
Elffindoeβ€’ in reply toWoody4

$40 seems reasonable to me. I had heard it was more like $400.

I don't pay anything for my drugs, but I guess I could cope with $40 for only one drug.

Otherwise forget it.

One of my drugs would cost about $6,700 a month.

Horizant is superior to gabapentin.

Just to make sure you understand though, you still need to stop the pramipexole otherwise it's a wasted $40.

Madlegs1 profile image
Madlegs1β€’ in reply toWoody4

Not worth it if you can't afford it.You will just need to take more Gabapentin. As you are doing?

Good luck.

LanaCSR profile image
LanaCSR

I have been taking Horizant for about 5 + years now. It started out working better than it does now, but I think it's still working. My neurologist has me on 3 meds for RLS, and I've considered stopping the Horizant (mainly due to cost since I don't have insurance...although my pharmacy has a good coupon they apply to bring the cost down for me). I wonder at this point if the Horizant truly is still helping me or if I could get by on just the other 2 meds. But my neurologist wants me to keep taking it. I figure he must know better than me. So I continue taking it. I wonder if I stopped taking it, would I need to wean off or could I just stop abruptly. And after stopping it, would I notice a difference immediately or would it stay in my system for a while? Horizant like everything else I've tried for RLS started out working great and then gradually (sometimes faster than gradually...lol) would reduce its effectiveness and in some cases stop working altogether. I don't understand why they all seem to work like that on me, but I know these other 2 meds I currently take have not stopped working, although they have reduced their effectiveness a little bit, but they still work well enough that I continue taking them. And maybe it's the combination of them that keeps my symptoms at bay. The reason I know this is because as soon as I take each of the 2 other meds I can feel it working, and when I have either forgotten to take one pill or tried not to take one on purpose just as an experiment to see if it's still working for me, I would notice my RLS symptoms flare up almost immediately. The only one I'm not sure about is the Horizant. Can anyone give me any advice about the Horizant based on what I've shared in this post? Also, to address Woody's question, I don't think it will help with augmentation, but I definitely think it will help reduce your RLS symptoms. I tried the true form of gabapentin back around 2012 or so when I was first diagnosed with RLS, but the side effects were so untolerable that I couldn't even get past the first increase in the medicine. So I wasn't able to take it. Thankfully Horizant is out there because it worked great for me, especially, like I said, at first, but it was reduced its effectiveness. But practically every medicine I've tried for RLS has done the same thing to me. I don't know if it's me or the meds. I still think it's worth a try, Woody. Good luck!! 😊

Madlegs1 profile image
Madlegs1β€’ in reply toLanaCSR

You don't mention the other two meds?Is it a state secret, for knowledge of which, I'll be shot?

πŸ˜†

Elffindoe profile image
Elffindoeβ€’ in reply toMadlegs1

It's an enigma. It's only a secret if you don't know the code.

Madlegs1 profile image
Madlegs1β€’ in reply toElffindoe

So--- I won't be shot?😎

Elffindoe profile image
Elffindoeβ€’ in reply toMadlegs1

mmmmmm!

Not up to me.

LanaCSR profile image
LanaCSRβ€’ in reply toMadlegs1

Hey Madlegs! I'm so sorry, but I've been in meetings at work until now. The other 2 meds I take is buprenorphine and dipyridamole. I get 95% relief with this magic "cocktail" of these 3 meds.

Madlegs1 profile image
Madlegs1β€’ in reply toLanaCSR

Thanks. I would imagine that there is absolutely no need for Horizant, while you are on the other 2.

Buprenorphin is a very powerful medication.

LanaCSR profile image
LanaCSRβ€’ in reply toMadlegs1

How do you think I should cease taking it? Should I stop altogether or wean off of it slowly?

Madlegs1 profile image
Madlegs1β€’ in reply toLanaCSR

You should consult with your doctor.But a rough formula would be about 10%per week.

See how it goes.

TeddiJ profile image
TeddiJβ€’ in reply toLanaCSR

May I ask who prescribed the dipyridamole? That is the newest and latest and greatest drug. I had an appt today and they knew of it and read my article from RLS.org magazine. But, they still wanted me to try Horizant first. I am unsure what to do. I am presently using Kratom after not getting more methadone from doctors.Thanks!

LanaCSR profile image
LanaCSRβ€’ in reply toTeddiJ

My neurologist prescribed the dipyridamole, but I would think any doctor could prescribe it since it's not an opioid. Good luck! BTW: I used to take kratom. It worked great for me and was especially helpful when I was struggling to find the right combination of meds to control my RLS! 😊

TeddiJ profile image
TeddiJβ€’ in reply toLanaCSR

Thank you, Lana! This is very helpful. I know you said you took around 4 teaspoons of Kratom and spread that out. So, you didn't wake up every 2-3 hours to take it? Amazing that one teaspoon got you through. For me, I was wondering if I could take more to sleep longer, if I continue with Kratom. I'm trying to get off of it, of course. Using it did get me off the methadone, although they are similar so not sure I get a prize. lol-oy.

I was using the Kratom powder and just could not stand the hell of having to take it every 2 hours overnight. Just the mess and the dirt and the misery of gagging it down while so exhausted. Now I have the capsules-which do not work nearly as quickly!

As for the dipyrid-how much of that are you taking? If you don't mind? I asked for it at an appt. yesterday, as I mentioned. They did ck out my article and they had heard of it. But they did not want to try it before Horizant.

I do have a future appt. with Dr. B and have to travel from Chicago and spend quite a bit of moola to do it.

I do have buprenorphine sitting right here, that I could start. It is from my late brother. Dr. B sounded iffy in an email as to whether I should switch to that from methadone and Kratom. Odd. I posted his response on this forum.

A third question for you: did you gain weight on Horizant? I am a middle aged female and boy do the weight gain percentages shoot up for my group. I lost a chunk of weight after going off the DA's of pramipexole and ropinirole. I never even KNEW that they caused all that weight gain. But now I believe it and do not want to go back to that.

Thank you for your info, Lana!

LanaCSR profile image
LanaCSRβ€’ in reply toTeddiJ

So sorry for the delayed response. I used kratom day and evening, but my other meds kept my RLS under control overnight. So I didn't have to wake up to take it. I mixed it up in a small amount of orange juice to get it down. Even still I had to hold my nose while drinking it because the taste is so nasty. I take four 75 mg dipyridamole pills a day, two at a time four hours apart. I never noticed weight gain on Horizant. I have been on it for years and don't have any issues with it. Lyrica, on the other hand, made me blow up like a balloon! I tried it and it worked well for my RLS, but I had to stop taking it due to the side effects. πŸ™

TeddiJ profile image
TeddiJβ€’ in reply toLanaCSR

I see-the other meds helped overnight. The Kratom does not seem to do that for me-for a long stretch, anyway. Or maybe I need to take more? Which is scary, too. I now have capsules with the powder-which works faster than capsules. I think I am taking about 5-8 teaspoons from evening to morning. Will try to nail that down more.

Thank you SO MUCH for all the info! Very helpful!

LanaCSR profile image
LanaCSRβ€’ in reply toTeddiJ

Oh, when I take kratom it doesn't last very long either. I was taking quite a bit of it for a long time, but it was the only thing that really helped until I started on the buprenorphine, dipyridamole, and Horizant. I never tried the capsules but have heard they don't work as fast as the powder. So don't feel bad about needing a lot of the kratom. If it helps you, then consider it a temporary solution until your doctor and you get your meds figured out. Good luck with Dr. B! I wanted to see him, but I live in Charleston, SC, and I couldn't afford the trip.

TeddiJ profile image
TeddiJβ€’ in reply toLanaCSR

I hear you, Lana. It is expensive for me, too-especially Easter weekend. OMG.

thanks so much for clarifying and for the encouragement!

did you take a lot of it at once during the night? when things were at their worst?

also-are you trying to drop the Horizant now? I can't imagine you would need all of these. Or, after my experience-maybe you should try to drop the opioid?!

Maybe the dipyridamole will do it all? I want to try that! it seems like the least dangerous thing to be on?!

I am afraid of weight gain on horizant but good to know it didn't happen to you! we have ENOUGH issues! lol-omg. did i tell you i lost a chunk of weight and i think it was getting off the DA's. it was such a SHOCK to lose it. never knew that!

LanaCSR profile image
LanaCSRβ€’ in reply toTeddiJ

Congrats on the weight loss!! I have thought long and hard about getting off one or more of these meds, but whenever I try to decrease any of them my RLS gets worse. Plus, my neurologist feels I need a combination of meds, not just one. So I trust his advice since he's the only doctor out of MANY I have tried that has helped me. I truly have about 95% control over my RLS almost all of the time. So I'm afraid to change anything at this point. Plus, it keeps me from having to take that nasty kratom...hahaha!

TeddiJ profile image
TeddiJβ€’ in reply toLanaCSR

lol! boy, it is ever nasty! i am in hell! lol-omg.

well, i am so pleased for you and if you did try to stop them already, then good on you-you have the answer! so glad you found a great doctor-it is truly a miracle.

Keep Dr Rye in mind in Atlanta, if you need him. Close-ish to you. He is supposed to be super kind and fantastic. I think I read that. And I couldn't get in until July-from Feb.

ps-did you take a lot of kratom at once in the middle of the night? i don't think you did but just double checking to see how much i could maybe do...thanks!

tagaxel profile image
tagaxel

I started taking Horizant as soon as I realized I was augmenting. It keeps away the major restless leg syndrome symptoms. The tough part is getting off Mirapex/pramipexole.

LanaCSR profile image
LanaCSRβ€’ in reply totagaxel

I had to wean myself off of Requip because it was augmenting for me. I used kratom to help me. It was the best!! I had absolutely no side effects and no RLS symptoms during the whole time I was weaning off of the Requip. I went from 2 mg down to no more Requip at all in about 4 months using the kratom. The kratom works almost immediately for me, 15 mins at the most. You can order it online. I hope this helps!

TheDoDahMan profile image
TheDoDahManβ€’ in reply toLanaCSR

As a sometime user of kratom myself, I'd be interested in knowing how many grams of kratom per day (1 teasp. = approx. 2 grams) you were using, at most. I, too, found it very helpful. Thanks so much!

LanaCSR profile image
LanaCSRβ€’ in reply toTheDoDahMan

I used a teaspoon at a time. But at times I needed more. It just depended on how severe my symptoms were. So I probably used about 4 plus teaspoons a day but only 1 teaspoon at a time. I hope that made sense...lol. I have a question for you: Do you happen to know what kind of shelf life it has? I have some that I haven't needed to use in over a year, but there are times every so often that I feel like I need it and then if I wait awhile the RLS feeling passes because my meds kick in or something. So I don't want to throw it away because I want to keep it around in case I need it, but I also have no idea if it's still effective since I've had it for so long. What do you think? πŸ€”

TheDoDahMan profile image
TheDoDahManβ€’ in reply toLanaCSR

Hi, Lana,

Just last week I used some kratom that I had bought nearly 2 years ago, and it still worked. Mind you, I had stored it in an airtight Tupperware-type container in a dark cabinet in the kitchen. Before I secured the methadone prescription, I was buying kratom online by the kilo for 80-100 bucks per, to overcome the lack of sleep that RLS had been causing me.

Eventually, I developed a gradual tolerance to it, and after a year or two of usage was using an 8-gram dose, 4 times per day. It was then that I visited Dr. B and found relief via the low-dose methadone, and I no longer have to use the kratom. At no time did the kratom cause me unwanted side effects.

LanaCSR profile image
LanaCSRβ€’ in reply toTheDoDahMan

That is awesome!! So glad to hear that you are getting such great control over your symptoms. And thank you for the info about storing the kratom!

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