I have suffered with RLS for years. About 3yrs ago now I OD on all my meds because the RLS just got to be to much. 2 weeks of constant jumpy legs. I couldn't do anything - one night it came to a head and my whole body was jerking and jumping. I had to be admited to the hospital. I don't remember much except waking up a day later. They tell me I was uncontrollable. They had to tie me down. I thank God I didn't wake up like that. I would have freaked out. I was finally released and told to see a Neurologist. She recomended Gabapentin. My Miracle drug. That night I took my first dose 2 pills and within an hour My Body went back to normal. Only one arm was giving me a problem with mild jerky and jumping. I take Gabapentin two in the morning - 1 gabapentin around 3pm and 2 at bedtime. I'm also on Mirapex 2 per day. I take one around 1:30pm and the other at 9pm. about 2hrs before bed. I hope this helps someone. Thank you for taking time and reading.
RLS THE DEVIL ITSELF: I have suffered... - Restless Legs Syn...
RLS THE DEVIL ITSELF
Why are you on mirapex if gabapentin worked?
I'd ask the same question as Sue.You mention OD on the RLS drugs. How long have you been on RLS meds? What were you prescribed?
Mirapex causes a severe worsening of RLS symptoms, exactly what you describe that led you to the ER.
It's no longer prescribed for this reason so you should try to reduce slowly & get off it.
Read all recent posts and replies. Get your bloods taken as majority of RLScan be resolved by raising serum ferritin levels.
Anti depressants and anti histamines trigger/worsen RLS so list all the meds you are currently taking.
Although your RLS has settled for now, the Mirapex WILL cause it to worsen.
thank you for your reply. I have a Dr.'s appt the end of this month and will ask her about the Mirapex. I don't know if the Gabapentin would work on it's own.
It can work on its own. And does so for many sufferers.
But- as said already- you need to get your serum ferritin checked ( should be well over 100)
Also check the effect of any othe medications you might taking.
Antidepressants, antihistamines, statins, __prazoles,.
Al these can set off RLS. There are alternatives for most of them.
Also much of what you put through your mouth can trigger rls.
High salt, high sugar, most processed foods, alcohol, MSG's and raising agent like in cookies etc.
Keeping an intake diary is a must
Good luck.
If Gabapentin doesn't work after a month at full dose ( average is 2400mg for Severe RLS) then you may need a low dose opioid. Methadone is highly effective at low dose for RLS.
thank you
I’m really glad you are doing better. It’s unfortunate mirapex is part of the equation, but I’m happy you are finding relief for now. The other people on this site know a lot more than I do, but I can say that my neurologist still prescribes mirapex (he probably shouldn’t), so it’s definitely still a thing people use and you aren’t alone in being on it or finding relief with it. My neurologist also says many people find relief with Mirapex for years without augmenting. I don’t know if this is true (it definitely doesn’t seem true of the participating members on this site), but I wanted to share what I have been told.
Gabapentin works for me too. It is a bit of a miracle drug! 
Thank you so very much-I appreciate your response.
I will give you my usual advice for people on dopamine agonists like mirapex. Up to 70% of patients will suffer from augmentation on it which believe me you don't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. 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 atHttps://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. To come off mirapex, reduce by .125 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 a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, I don't know how much you are taking since they come in sizes from 100 mg to 400 mg. Also I don't know why you are taking them throughout the day. Do you have symptoms during the day? If not Normally they are taken only at night. They won't be fully effective until you are off mirapex for several weeks. After that 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. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.
Hi sue! I to am on Mirapex.5mg only one tab bf bed. As well as the Gabapentin & opiates. I didn’t know any of this about Mirapex?!? If I don’t take mine I usually wake up in middle of night with an RLS episode?!? So I know everyone on here is bashing it but what works for some may not be same. Also her dosage may be causing augmentation?? I agree if you take to much this will 100% happen. For me my body would be great on just opiates if it were accepted!!! It would help with my chronic pain & RLS!! I was great for last 15 years at least until they lowered my opiate dose! Now between that issue & the exacerbated pain and add the bonus prize of …..after having a spinal fusion a year ago at L4/5 ( I believe he did something to nerves?) I am in more pain , I get RLS at least 5 x a week , my feet are intolerable, and I cannot do normal stuff anymore all at the young age of 58!! I dread doing simple things like cleaning my house, going food shopping etc etc it’s ridiculous. I had double knee replacement in 2017, followed by a lymph node removed from my groin 2018 & fusion in 2021. Need to fix my C4/5/6 fusion in my cervical spine and thoracic but I don’t want to do now bc for the first time in my life I don’t trust any doctor!! Not to mention I don’t think I could handle that surgery now. I certainly cannot handle the RLS episodes anymore!!
If you can find my post about severe RLS episodes in hospital after my fusion surgery please read and respond.
I really feel the medical community needs to be educated on RLS yesterday.!!!!!!
I read your post and what a horrible experience ! The next time you have to go into a hospital, tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine. Also talk with the patient representative ahead of time. It is a good idea to bring your own medicine, but don't tell them you have it since they will insist on giving you medicine prescribed by the hospital. That way if they don't follow through you can take the medicine you brought. If it would be difficult to get to it, have a friend bring some. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $45, but they have some good information on it and you get their monthly magazine. Unfortunately it is known that back and spine surgery often make RLS worse as you discovered. Why did they lower your opioid dose since it worked? I certainly can understand your wanting to stay on Mirapex and not everyone will suffer augmentation on it. You might want to add gabapentin. Although it won't help as much as it would if you were off mirapex, it should help some. See my post above. Also have you had your ferritin checked. And are you taking any other medicines or OTC supplements, since many can make RLS worse.
How much gabapentin are you taking?
5 capsules a day 300 mg each capsules. 2 in the morning 10:30am -- 1 at 3pm -- 2 before bedtime.
thank you Sue. I will let my Dr. know what you have told me.
I also am on Gabapentin and mirapex for years. Gabapentin is for nerves and Mirapex specific for RLS . I also take opiates which to me are the catalyst. I have sometimes just taken opiates for my chronic pain all day and not Gabapentin. Just 1 tab 5mg mirapex bf bed. Fine all day. It’s unfortunate that medical community knows very little about RLS especially in hospitals!!! Plus they do not want to admit opiates are RLS peoples saving Grace!! Glad your doing better! Just watch out for augmentation.
You just don't know how much of what you told me I appreciate. Thank you so much.
Not what you're looking for?
You may also like...
Restless Leg is the DEVIL!!
Severe RLS and scared.
rls and the average person
Dangers of Opioids for treatment of RLS
Tramadol Prescription for Refractory RLS?
Related Posts
Easing my RLS symptoms
RLS differential diagnosis
My ways of coping, or not, with RLS
Severe RLS, I suffer terribly. Moderation team
