Hi everyone, I'm new to the group and happy to have found you. I have primary rls but it was never that bad untill I had seratonin syndrome in 2012 and in icu for 21 days and on a ventilator for 2 weeks. When I finally got out I had rls 24/7 and it's bad and getting worse taking 1.5 to 2 mg of ropinirole, 1800 mg of Gabapentin, lose dose norco and sometimes Lorazepam for when my rls is so bad that I'm freaking out. My ferritin is up to 40 andvi take iron everyday with Vitamin C.It's agumenting without a doubt. The doctor wants me to try Horizant. I know it's just extended release Gabapentin. I want to get off the ropinirole but I have to do it on my own. The neurologist just wants to up the dose of ropinirole but has suggested Horizant in addition to the Gabapentin I already take.
Does anyone have and experience with Horizant?
I haven't had more than 4 hours of sleep a night in years and that's a good night. Also can't sit for more than an hour, I can't travel or even be in a car for long. I'm 67, retired, widowed with no kids. I'm on my feet for an average of 18 or more hours a day. My quality of life sucks.
I have a plan to slowly get off the ropinirole but can't imagine going through the withdraw. I'm frustrated, scared and fighting depression. Any encouraging words and information would be much appreciated.
I'm also considering trying gummies but never liked feeling high. Does anyone have any experience with those?
Thanks. Im hanging in. I'm a pretty tough woman but this is kicking my butt.
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Crazy-Leggs
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Welcome to the forum. You will find lots of help, support and understanding here.
There is no point taking gabapentin nor Horizant until you are 3 weeks away from getting off ropinirole. They won't help you while you are on ropinirole. And you may not need as high a dose as 1800 mg gabapentin. And Horizant is much more expensive. And you certainly don't need to take both.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
To come off ropinirole , reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your Norco temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis including gummies temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin the beginning dose is usually 300 mg gabapentin . Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks. Normally after that you would increase it by 100 mg every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." So you are already at the upper part of that.
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason.
Your ferritin is very low for RLS. You want it to be at least over 100 and some say over 200 or 300 as it helps 60% of people with RLS and in some cases completely eliminates their symptoms. You should ask for an iron infusion to quickly bring it up.
You are right to take your iron with vitamin C. Also take Lactobacillus plantarum 299v as it also helps its absorption.Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Which iron are you taking and how much?
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
Welcome.We've nearly all been in your shoes and most of us have made it through the withdrawal from Ropinirole or Pramipexole.
You can do it. It's going to be tough. But once off Ropinirole- you'll get your life back.
I can't believe a neurologist would suggest increasing Ropinirole!
Name and shame time so others can avoid.
There's no point adding horizant! You're already on gabapentin and as you've found out- it doesn't help when you're augmented on Ropinirole.
So- tell us where you are- I presume USA. We can direct you to a good doctor.
Start reducing Ropinirole NOW. Reduce by 0.25mg every 2 weeks. Symptoms will flare up at each reduction. Ask the new doctor for a low dose opioid like codeine' tramadol or oxycodone to settle the withdrawals for 4 or 5 days.
Start reducing now. By the time you see a good doctor you should be at around 1mg Ropinirole.
Please list all the meds you are currently taking and the dose. As your serum ferritin is so low- you need to keep taking iron supplements every other day. The new doctor may arrange an iron infusion
Read all posts headed Ropinirole, Pramipexole or Augmentation.
This is a UK help forum run by RLS-UK. Have a read of the website.
Thanks again, any advice on dealing with the constipation that iron supplements cause? I take Iron Bisglycinate 25 mg for about a week. Then wait to poo. In a few days I most always have to take a senna laxative. I do this back and forth trying to get my numbers up. I also take a stood softner every day to no avail. I drink a lot of water but iron is notorious for causing constipation. Compared to the augmenting of the ropinirole constipation I can live with.
Unfortunately 25 mg is not enough to bring your ferritin up. You need 50 to 75 mg of iron bisglycinate if your ferritin were over 50 and 75 to 100 mg if your ferritin is lower which yours is. Taking it every other day should help you constipation along with the suggestions others have given, but I would try to get an iron infusion to avoid that problem.
As Joolsg suggested join the Restless Legs Syndrome Forum at rls.org. It costs $40/year and has lots of helpful information on it's site and has a monthly magazine.
If you tell me what city and country you are in I may be able to give you the name of a knowledgeable doctor.
Most neurologists are not up to date on RLS. I would suggest you see Dr. Shalini Paruthi who is chairwoman of the board of the RLS Foundation She also has RLS. She is at St. Luke's Sleep Medicine and Research Center St Louis/Chesterfield.
You probably only have to see her once if at all and then could do telehealth appointments,
Or Dr. Margaret E. Mike (214) 638-4801 Columbia MO at your University hospital is listed on the Restless Legs forum list. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who asked to be on the list, they still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.
I saw Dr Mike once. For maybe 20 minutes a few months ago. I learned after talking to her for a few minutes that she didn't really know much about rls. Her specialalty is sleep apnea. As well as Psychiatry. She suggested increasing my requip and drinking liquid iron. She said my ferritin levels need to be 70. I have absolutely no signs of sleep apena🤨
So I decided to try and get in with a Dr that has been in that department a lot longer and actually lists rls as one of the things he treats.
Thanks for the name of the Dr in Saint Louis. It's about 3 hours from me. At this time I couldn't be in a car that long but maybe once I get off the requip I'll be able to.
That's so discouraging. She must have been recommended by someone as I mentioned who was happy with DAs. I will notify the Restless Forum administrator and see if I can get her taken off the list.
Hello Crazy-Leggs. Welcome to the forum and we are all here to help and support our fellow members. Firstly you don’t say where you are in the world which is helpful with regards to advise. Secondly you need to dump your consultant preferably from a great height, whoever you are seeing know nothing about RLS and its treatment and are in fact making things worse for you. I was on prescribed Ropinirole which was increased to 6 mg a day and after many years I augmented and RLS-UK advised me to withdraw slowly. This I did over a period of 13 months. It took that long because of the extremely high dose I was taking. I did it without having anything to help me through it so please don’t worry as I’m sure you can withdraw in a shorter time and believe me it’s worth it. If you are in England and thinking about the Cannabis route and are willing to pay then there is a legal clinic run by specialist medical professionals that was recommended by my consultant, see below.
I went through the initial stages and paid £50 for my first consultation on zoom. I was advised that they prescribe various types of cannabis depending on your condition and severity, gummy’s as you mentioned, oils (flower) that you put under your tongue and vapes, they apparently all work some within one minute and other’s within 40 minutes. None of them are a single dose but have to be used at various times throughout the day. As I said it’s not cheap £50 for initial consultation and then every 3 months rot first year to monitor the patient then every 6 months second year and of course you have to purchase the product which the clinic will dispense as required.
I send this as information for other forum members who may find it of interest. I can assure everyone that I’m not a secret grower and have no financial obligation to Curaleaf 🤣. They were recommended to me by Doctor Murphy at Salford Royal Hospital when I was struggling to find an opiate that I could use that worked.
I’m so sorry you’re going through this. I’ve dealt with it for years and nothing worked. Finally went to a neurologist specializing in sleep medicine and was given low dose methadone. Thank God , it has saved me . I’ve been on it since November and am like a new person. I sleep a full night and have little if no side effects. I just wish these docs would become more informed and stop prescribing useless and possibly dangerous meds for those of us suffering with this Rls mess . Good luck
I have taken Horizant for almost 2 years. It is the enacabril salt of Gabapentin specifically for rls where Gabapentin HCL is for other indications but does help some people with rls. I had to slowly wean off of ropinirole but began the horizant 600 at 5 pm daily. While weaning. It is so tough and I pray that God will give you relief with this Horizant. It is expensive but oh so worth it. I have a few outbreaks now and then but praying it remains my answer for rls.
I augmented on pramipexole which is in the same category as ropinirole. I've been taking Horizant for over three years. I'm not sure why you should be taking both Horizant and gabapentin. Horizant has been working well until recently it has been wearing off before the 24 hour period and I now have to double dose, while I'm considering switching to pregabalin. While gabapentin and Horizant are chemically related they are not the same.
I waas on Mirapex for about 20 years and was augmenting on it, so had to go off it and onto low dose methadone. I, too, was afraid of coping with mirapex withdrawal but it. wasn't so bad, and I hadn't started the methadone yet. I hope your ropinerole withdrawal will be equally easy.
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Horizant and Gabapentin
ROPINIROLE VS HORIZANT
Gabapentin dose.
Horizant 
Ropinirole as needed?
