My restless legs began 5 years ago with other menopausal symptoms. After trying most front line medication therapy i tried a ferritin infusion a few years ago . My ferritin levels were normal however i read an article that said it was impossible to measure levels of ferritin in the brain .
After the ferritin infusion I was symptom free for 5mos. unfortunately when the symptoms started to return my ferritin levels were too high to administer another ferritin infusion. My levels still remain too high .
I have been on sinemet for a year and am suffering from augmentation.
Has anyone tried the peroneal stimulation device ?
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Fluffyceasar
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Welcome to the forum. You will find lots of help, support and understanding here.
Yes sinemet which is carbodopa/levodopa acts just like a DA and you need to come off it. It has not been used for RLS for some time. The recommended medication now is gabapentin or pregabalin.
Reduce by 10% to 20% 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) 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. (You don't need to divide the doses on pregabalin) 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 (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) 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 (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
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...
I also recommend you join the Restless Legs Foundation at rls.org especially if you are in the US. An international membership is $40 and they have lots of information on their site and a monthly magazine
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
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.
Thank you for so much information. What does DA mean ? Sinemet is my last resort . I have tried all other medications mentioned , as well as opiates . And unfortunately my ferritin level is over 200mg so no further infusions.
DA means dopamine agonist like ropinirole, pramipexole and Neupro.
You say opioids didn't work. You may have tried one that is short scting and needs to be taken as much as 4 times a day or you may have not taken a high enough dose or you may have taken it while you were on sinemet.
I have never heard of a low dose opioid not working if taken correctly for RLS. Side effects one couldn't stand - yes.
What opioid did you try and how much and was it when you were off sinemet and any DA?
1. As your infusion worked but you don't believe that you can get another one, you could try to raise ferritin levels again by taking oral iron (although this can be very slow/ineffective at higher levels) :
Perhaps you could try downloading from the above link to show your doctor, in the hope that they'll agree to further infusions?
2. The SSRI you're taking could well be contributing to your RLS: stopping taking it while still on Sinemet could have just *seemed* ineffective. Many medications can trigger RLS in many, see this list:
3. You really need to wean off the Sinemet, following the process that SueJohnson outlined in her response. Sinemet hasn't been recommended for persistent RLS by experts for years.
4. DA = Dopamine Agonist = pramipexole (Mirapex, Mirapexin, Sifrol), ropinirole (Requip, Repreve, Ronirol) and rotigotine (Neupro, Leganto). These are no longer recommended as first line treatments for RLS by experts because of the very high likelihood of developing augmentation over time and the possibility of developing impulse control disorders: if offered one of these you should decline.
5. Gabapentin and pregabalin are now first line treatments for RLS. As Sue says, they will not be fully effective until you've been off carbidopa/levodopa, co-careldopa (Sinemet, Atamet, Carbilev) for several weeks. However, they do not work for everyone after augmentation.
6. If meds are needed and gabapentin and pregabalin are still ineffective after being off Sinemet for a few weeks a low dose opioid may be the solution:
I see that you say that you've tried opiates, but depending on what you tried and whether other unaddressed factors were triggering your symptoms this may not have been a 'fair' trial.
7. I find that too much sugar, artificial sweeteners, caffeine etc, particularly in the evenings can trigger RLS.
8. If the device you're referring to is the Noctrix Nidra NTX100 TOMAC, which works by electrical stimulation of the peroneal nerve: this is currently very expensive and only available - on prescription - in a handful of US states. While it is backed by some experts, reported results have been mixed.
Alternatively, you could try the comparatively cheap Therapulse device which works by vibration:
Unfortunately my ferritin levels remain very high (200) since my ferritin infusion 2years ago so i am unable to recieve any form of iron.
As per Sue, I will wean off sinemet . I have already sent above information to my physician on weaning off sinemet combining an opiate for withdrawals.
i have tried oxycontin a few years ago- i can’t remember the dosage but i recall only feeling sedated but no relief of rls symptoms. Added diazepam (valium) but no relief of symptoms .
Hi - 200 is not actually 'very high': this is not (just) my personal view, see this section from RLS UK's paper on iron therapy and the link again to the PDF of the full paper (which I suggested you show your doctor) below:
"2. The key measurement for iron is serum ferritin, also known as iron stores, measured in micrograms per litre (µg/L). Ferritin values between 25 - 250 µg/L are considered normal and many doctors regard 300 μg/L serum ferritin as the accepted, safe upper limit. However many RLS patients need levels above 300μg/L and haematologists regard levels of up to 1000μg/L as safe."
(I should clarify that the 'safety' of levels up to 1000μg/L is based on the haematologist knowing why the level is so high [e.g. *an infusion* or temporary inflammation] and knowing that the level is likely to fall again over time)
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To Infuse or not to Infuse
Ferritin levels. 
Iron infusions
The outcome of my infusion, and a question
