Requip to Horizant and dizziness

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.
Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Requip to Horizant and dizziness

Post by Brendan »

Hello Fellow RLS Sufferers,
I have been reading many very helpful posts on this forum over the last year or so. This is my first post since things have become a bit worse for me.

In January 2020, I am a 51 year old male in the USA. I have had RLS for around 20 years. I know my brother has RLS and I think my father (Irish descent) and mother (Scandinavian descent) have it as well. I have been on Requip/Ropinirole for 15 years. I am taking three 0.5 mg tablets (1.5 mg) each night. I am in decent shape and workout regularly. No smoking or alcohol but unfortunately I love French press coffee and have one each morning (I have tried cutting it out but there is absolutely zero improvement).

In 2020, at age 51, I would consider my RLS symptoms severe. I now have DA augmentation. In my thirties it was just a mild sensation in my lower legs and feet and I could eventually fall asleep without any medication. It never bothered me during the day or evening when I was awake. Now, in my fifties, it can come in the middle of the day, sitting at my desk at work, even when driving. It is weird in that it can occur in only one leg (below the knee and in the foot) but the leg (L/R) is completely random. Other times it is both legs. It has spread to a spot in between my shoulder blades and also my forearms and hands. When taking 1.5 mg, I go to bed at midnight but I usually wake up at 4:30 AM with severe symptoms and there is nothing that makes them go away except getting out of bed. I am very tired every day. I try to nap at lunch time but the symptoms start within 10 minutes of lying down. I am also a little groggy each morning as the Requip/Ropinirole gets out of my system.

Over the last four weeks I have tried to taper off the Requip/Ropinirole without any substitute. I wanted to try feel like I did in my thirties when taking absolutely no medications. Each week I would reduce by 0.25 mg (half a tablet). So I did:

- Week One at 1.25 mg,
- Week Two at 1.00 mg,
- Week Three at 0.75 mg,
- Week Four at 0.50 mg.

The first three weeks were difficult with more symptoms and I was very tired but I actually started feeling like I did in my thirties without any medication. It was a more “normal” tired if that makes any sense at all. I did not feel groggy at all. I actually felt good even though I was tired. However, Week Four was too much to take. The symptoms went crazy and attacked with a vengeance. I thought that if I was strong and just waited until 4 or 5 AM the symptoms would abate and I would get 2 or 3 hours of good sleep but the symptoms were unbelievable – they never, ever, ever stopped and they were severe. After two days of no sleep I completely gave up and went back to 1.5 mg and slept for a solid 6 or 7 hours (had to take a day off work).

My GP sent me to a sleep specialist this week (I had seen one in 2003 as well for an overnight sleep test). This time, the specialist recommended switching to Horizant (gabapentin enacarbil), 600 mg each day at 5 or 6 PM. He recommended taking the DA as well but reducing it by half a tablet (0.25 mg) each week (i.e. execute the same taper as above except with Horizant this time).

Last night, January 24, was the first night I tried one Horizant (gabapentin enacarbil) tablet (600 mg) and 1.25 mg Ropinirole. I took them both at 11 PM (a bit late for the Horizant). I had eaten two hours before at 9 PM. I slept ok with very few RLS symptoms. However, at 8 AM I was still tired but got out of bed because of RLS symptoms. Also, during the day I still get RLS symptoms if I lie down and try nap.

My main complaint today (especially this morning) is that I am very dizzy and a little bit nauseous (or “off balance”). I did not feel good about driving 15 minutes to the grocery store at 11 AM this morning but it went ok. The dizziness is definitely (much) worse than using just the DA.

Do you guys know if the Horizant dizziness will last forever? How many days does it take for the dizziness to abate when switching from Requip/Ropinirole to Horizant?

Thanks so much for the help.
Brendan
Last edited by Brendan on Sat Jan 25, 2020 11:23 pm, edited 1 time in total.

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

Iron panel done this week was normal and sleep specialist did not recommend anything for iron.

IRON and TIBC:
....Iron 54 (45-160)
....Iron binding capacity 314 (228-428)
....Iron Saturation 17

FERRITIN 100 (30-400)

MAGNESIUM 2.1 (1.6-2.5)

stjohnh
Posts: 1124
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Requip to Horizant and dizziness

Post by stjohnh »

Brendan, I'm glad you found us. Sounds like you have a fair handle on what's happening to you. Severe RLS with augmentation. Those of us who have been through it know what torture it is. Using Horizant would be in line with standard augmentation options. However, Horizant is almost never a strong enough med to control severe RLS by itself, and you need to get completely off the Requip at some point to reset your dopamine receptors. I'm impressed you were able to cut the dose as much as you have. The symptoms you describe from Horizant are common and sometimes resolve by themselves and sometimes not.

More likely, you will continue to have serious symptoms until you are either off the Requip completely for a few weeks (at which point it is slightly possible that Horizant alone will control your symptoms), or you start on an opioid. With severe RLS, most likely you will need an opioid to control your symptoms, assuming you can't get the IV Iron infusions, which you really need.

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Your iron tests show you would be a suitable candidate. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

Hi Holland,
Thanks for replying. You stated "... Horizant is almost never a strong enough med to control severe RLS by itself ...". I need to google this but has there been good studies on the efficacy of Horizant vs Requip for severe RLS? I will try research this tomorrow.

Also, I am a little confused on DA augmentation. I have read a little bit and i guess it has to do with the speed at which symptoms get worse. My main question is: are my worsening symptoms simply due to aging (30 years old to 51 years old) or are my worsening symptoms due to DA augmentation over 15 years? Maybe if i had been on Horizant or opiates for 15 years, my RLS symptoms would still be worse just from getting older. How can I tell if worsening symptoms are due to aging 20 years or augmentation? Fifteen years ago i think i was at 0.5 mg Requip but it has slowly gone up to 1.5 mg. I found that 2.0 mg Requip gave me headaches and dizziness but maybe i should try 2.0 mg again.

I will do more research on IV iron infusions and ask the sleep specialist about it again. I am supposed to meet with him again in 20 days or so but i was thinking of trying to advance the appointment because i am not very happy with how Horizant makes me feel (or maybe its due to the combination of the two drugs - i don't know). The 1.5 mg of Requip by itself does NOT make me feel so dizzy all day like today (1.5 mg Requip = only a little bit of dizziness in the morning). Then again, today was my very first day and so maybe i should keep trying (be more patient). I just don't want to be dizzy all of tomorrow (Sunday) and then its back to work on Monday after being dizzy all Saturday/Sunday.

Any how, thanks again.

stjohnh
Posts: 1124
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Requip to Horizant and dizziness

Post by stjohnh »

Brendan wrote:... has there been good studies on the efficacy of Horizant vs Requip for severe RLS? I will try research this tomorrow. .
I'm not sure about studies of Horizant vs Requip in severe RLS. I suspect there are studies for mild RLS. My statement is made on the basis of reading perhaps 100,000 posts on this forum over the last several years. I'd be surprised if anyone that posts here has severe RLS controlled with Horizant alone. LOTS of stories of Horizant alone failure in severe RLS.
Brendan wrote:... I am a little confused on DA augmentation. I have read a little bit and i guess it has to do with the speed at which symptoms get worse. My main question is: are my worsening symptoms simply due to aging (30 years old to 51 years old) or are my worsening symptoms due to DA augmentation over 15 years?
You are correct in that natural progression of RLS can sometimes be confused with augmentation. Augmentation is the situation in which symptoms worsen (become more severe, occur earlier in the day or spread to other body areas) in spite of increasing dosage of Requip. Almost everyone on DAs (dopamine agonists: Requip, Mirapex or Neupro) will eventually develop augmentation if they are taking more than a minimal dose of DA for long enough.
Brendan wrote:... Then again, today was my very first day and so maybe i should keep trying (be more patient). I just don't want to be dizzy all of tomorrow (Sunday) and then its back to work on Monday after being dizzy all Saturday/Sunday.

Any how, thanks again.
Certainly it is worth taking the Horizant for a week or so to see how your body adjusts to these symptoms.
Blessings,
Holland

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Requip to Horizant and dizziness

Post by QyX »

Hello Brendan,

over the years I have basically taken all antiepileptics than can be prescribed for RLS including a few others who can't be used to treat RLS. Dizziness is quite a common side effect of antiepileptics and the long lasting effects of Horizon will expose you those effects for basically 247/.

Unfortunately there is no way to predict if this will go away or not but most likely it will. It can just take a very long time. You basically have to decide for yourself how troublesome this side effect is for you. If you can't work and function like this, then I don't see a point why you should continue this experiment.

Right now the issue is that your RLS is hard to assess because without stopping the Ropinirole completely there is no way of telling of how much your RLS has progressed naturally and how big the augmentation factor is. Most likely it is a combination of both.

It could very well be, that you ultimately will need opioids because Horizon could prove not effective enough in treating your RLS. Sadly there isn't any good evidence that Horizon / Gabapentin / Lyrica can treat severe RLS without additional medication. And since it seems that you augmented on Dopamine-Agonists, your best option would be potent opioids.

In case you are not able to access potent opioids, you can also look in Kratom. There is lot of knowledge and experience regarding Kratom in this forum.

If I were you, I would make a push for stopping the Dopamine-Agonists with the help of potent opioids. Maybe your baseline symptoms without DAs are mild enough that you can stop the opioids again and maybe in that case Horizon is maybe sufficient but based on the available evidence and the experiences reported by other patients I am sceptical.

When it comes down to severe RLS, what has proven to be effective is 1) i.V. iron, 2) opioids 3) Kratom 4) medical Marijuana

Personally I also had good effects with Carbamazepine and Oxcarbazepine. But those drugs are not commonly prescribed in the U.S.

In Germany they are commonly used to treat epilepsy and mood disorders, so many doctors are familiar with them. I decided to try them because at that time I literally no other options and extreme insomnia. Carbamazepine worked for me for 3 years when it suddenly failed and started to make my RLS worse. No idea why that happened.

I then switched to Oxcarbazepine at a much lower dose and later started medical Marijuana. All that time I was already taking potent opioids at an equivalent of roughly 180 mg Morphine per day.

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

stjohnh wrote:Almost everyone on DAs (dopamine agonists: Requip, Mirapex or Neupro) will eventually develop augmentation if they are taking more than a minimal dose of DA for long enough.
Doing a quick search, I think that is right:
https://www.neurologylive.com/clinical- ... g-syndrome

"...but 7% to 8% of patients per year that you put on these medications will start to get a worsening of RLS called augmentation. By 10 years, 70% to 80% or more of your patients will be in augmentation. I can’t say 100%, but probably, if you follow these patients for 10 or 15 years or more, you’ll probably see 90% of the patients develop a worsening of RLS requiring more and more medication which then makes the condition even worse."
stjohnh wrote:Certainly it is worth taking the Horizant for a week or so to see how your body adjusts to these symptoms.
Sigh ... I know you are correct - just not looking forward to it.

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

QyX wrote:It could very well be, that you ultimately will need opioids because Horizon could prove not effective enough in treating your RLS. Sadly there isn't any good evidence that Horizon / Gabapentin / Lyrica can treat severe RLS without additional medication. And since it seems that you augmented on Dopamine-Agonists, your best option would be potent opioids.
That is good info to have. Thank you. I will talk to sleep specialist in 20 days and see what he thinks about opioids.

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

Just a quick note. Last week was very difficult as I was in Week Four of tapering Ropinirole (3 weeks to go from 1.5 mg to last week at 0.25 mg). I was extremely tired/exhausted and gave up Wednesday night and went back to 1.5 mg - I absolutely, positively needed some sleep.

Friday night was first night on 600 mg Horizant and 1.25 mg Ropinerole and ALL Saturday I felt very dizzy and a little nauseous. Saturday night I did not take any Horizant but i tried a new Ropinerole stagger:

10 PM: one 0.5 mg tablet
11 PM: one 0.5 mg tablet
12 AM: one 0.5 mg tablet

I easily feel asleep and I woke up Sunday morning around 8 AM with no RLS symptoms which is extremely unusual for me. I dozzed in bed until 10 AM with very few (almost none) symptoms which is also very unusual for me. It is the best sleep/rest I have had in several months (maybe even a year).

I doubt it was the new staggered ingestion of Ropinirole. It leads me to think that the residual affect of the Horizxant from 24 hours earlier and the Ropinirole have a positive affect on things. Not very scientific i know. I will keep experimenting.

badnights
Moderator
Posts: 5757
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Requip to Horizant and dizziness

Post by badnights »

If that was indeed a response to the Horizant, it's very positive news :) Take it whenever you can get it!

You've got guts, to be tackling this reduction without opioids. I hope the Horizant continues to help and stops making you dizzy. (One can hope?)
I will talk to sleep specialist in 20 days and see what he thinks about opioids.
Just a note of caution regarding how you bring up the subject, because some doctors are overly sensitized to drug-seekers. You can tell him that everything you're read about augmentation mentions that the withdrawal symptoms are even worse than the augmented symptoms, and that potent opioids are usually needed to control them. Tell him you are worried about this, not the opioids per se but that your symptoms are going to get even worse as you progress thru the withdrawal, and you want to be sure you'll have some measure of control over them, to be able to function at least somewhat.

If he does not share your view that it is critical to get off the DA completely, then maybe you will need to find another ally in this.

At some point (I'm assuming you are truly committed to eliminated DAs), you may arrive at a state which is seemingly beyond your capacity to withstand. That's when you have to
- excuse yourself from all daily functions except surviving,
- remind yourself that it's a temporary state. It WILL end, and you only have to endure for a while longer; and
- when it ends, everything will be so much better.
You might never have to go thru that - I think polar bear stopped ropinirole from a fairly high dose without too much grief using a long slow taper. (correct me if I'm wrong, betty!). But in case you do - you're not alone, others have done it, you can do it; and it ends. It does end.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

Thanks for kind words. I was going to tell specialist I don't really want to keep trying Horizant. I know giving up after just one night is not ideal but i just "have a hunch" the drug does not agree with me - I think i have tried it in the past (5 years ago?) and i always seem to not like the side affects and no real improvement with the RLS symptoms (granted, giving it just one night this time is not fair). Then again, Saturday nights good sleep (24 hrs after Horizant) was so surprising. I have time to experiment before the next dr visit.

I will be careful bringing up the opioids with the sleep specialist. I like your wording. I really do want to do an experiment where i go 2 or 3 weeks with absolutely no DA and see if RLS goes back to how it was in my thirties - just my lower legs, not my torso and arms/hands and no really severe symptoms every single morning at 5 AM. But to get there i need some help because my last attempt with nothing to help almost killed me.

QyX
Posts: 707
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Requip to Horizant and dizziness

Post by QyX »

I have to add one thing: it would be really worth investigating properly how you respond to Horizant. Even if you don't tolerate it very well after a 2 weeks, this is still very valuable information because it will strengthen your case for opioids.

Even many of those doctors who prescribe opioids for RLS at least want you to try all the alternatives before going down the route of opioids. Because once you start with opioids for RLS, you most likely will never stop because most likely the RLS will not get any better over the years and sometimes there are minor tolerance issues, which can make it necessary to increase the dose. To stop, you would need an alternative who would work just as good as opioids. Sometimes i.V. iron can be as effective but there is no way of really knowing ...

Also you can check if Kratom is legal in your state. Kratom almost is as good as potent opioids as long as you only need smaller doses. Given that you won't have any opioid tolerance, Kratom most likely would work extremely well. You can search the forum for this topic. There is a lot of good information about it.

badnights
Moderator
Posts: 5757
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Requip to Horizant and dizziness

Post by badnights »

I agree with QyX, you have to give Horizant a fair trial or the dcotor will not even consider opioids.
I really do want to do an experiment where i go 2 or 3 weeks with absolutely no DA and see if RLS goes back to how it was in my thirties - just my lower legs, not my torso and arms/hands and no really severe symptoms every single morning at 5 AM. But to get there i need some help because my last attempt with nothing to help almost killed me.
This makes me think of two things. First, you probably want to go off DAs forever or for the foreseeable future, not just for 2-3 weeks. (Maybe way down the road you could re-introduce a DA at a very low dose in combination with a different class of med, and perhaps cycling periods of time using it with periods of time not using it.) It might take longer than 2-3 weeks to get to your baseline, but that should get you close enough to know if things are better. I would think in terms of 2 months off DAs, that's assuming you have some kind of non-DA treatment that controls the symptoms. Then you will see the joy!

The other thing I think of is how perfect those words would be to tell your doctor. Just like that!
(maybe replace 2-3 weeks with 2-3 months. It's her job to get you there!)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
Moderator
Posts: 7938
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Requip to Horizant and dizziness

Post by Polar Bear »

Just to confirm what Badnights said.
Yes I weaned myself off ropinerole without much difficulty.
My dosage was 5mg daily over 24 hours. I took 11 months to wean off....very slowly. Drop by .25 and stay at that for 2 or 3 weeks. Then drop by another .25. Sometimes I waited a month before dropping again. Each time by only .25mg. Eventually reaching .75mg daily dose.

On that a few weeks and then cold turkey off the .75mg.
At no time did I suffer any bad times.
Very slowly is the way to go.

I was also taking codeine and pregabaline .... Still do.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Brendan
Posts: 8
Joined: Sat Jan 25, 2020 9:30 pm

Re: Requip to Horizant and dizziness

Post by Brendan »

ok - I will try give the Horizant a fair trial period and see if dizziness subsides.

Right now i am still taking the 1.5 mg Ropinirole. I will see if i can reduce slowly while taking the Horizant but if Horizant dizziness persists i will ask doc for something else to help me get off the Ropinirole.

Thanks to all for the helpful posts. I will report back.

Post Reply