I have suffered from RLS for 28 years, since my first pregnancy, but it has gotten worse with time. About 9 years ago, I started taking ropinirole, but a year and a half ago, I developed a tremor and decided to switch medication. I am not an advocate for medication. I have tried all sorts of alternatives, but nothing has worked and as we all know, sleep is essential. For the last year, I have been taking Pramipexole, but the tremor is worsening. I have been to two neurologists, but they have opposing views -- essential tremor or early parkinson's. I think it is all related to dysfunction in my nervous system and gut related issues (have also had a SIBO diagnosis). I am just posting here to see if this rings true for any of you. Would love to hear.
Best,
Sarah
Written by
Sarahmapo
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The pramipexole may be causing the tremors. Ropinirole can also cause tremors. Discuss this possibility with your doctors.
You need to get off it anyway as up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation.
Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist. Https://mayoclinicproceedings.org/a...
To get off it First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .088 [.125] tablet) (ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Dopamine agonists like ropinirole and pramipexole and the Neupro patch (Rotigotine) are no longer the first line treatment for RLS. Gabapentin or pregabalin are. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off 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 split the doses with 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.
If you take magnesium even in a multivitamin or magnesium-rich foods, 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 nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If the pramipexole is causing the tremors they probably won't get better until you are off it and your withdrawal symptoms have settled.
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. 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 including in a multivitamin 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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
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.
Sarahmapo- read the post by Riversong just above yours.Like most people who visit this forum- the problem you are experiencing sounds to me like sudden leg jerking because of augmentation.
Do you sit and then the leg suddenly jumps? Or is the tremor under the skin? Does moving stop the tremor?
If so, that is severe RLS caused by the drugs.
Can you sit still in a car or during a theatre show or cinema? If not, it means you have augmentation.
As SueJohnson advises, you need to get off these dangerous drugs.
They ALL cause augmentation. Experts now believe every person taking them will experience drug-induced worsening (augmentation).
So follow SueJohnson advice on how to get off them and start replacement meds.
RLS-UK has a withdrawal schedule under 'useful resources'.
And if you had been treated with an iron infusion during or after pregnancy, you probably would not have RLS now.
Sibo is also linked to RLS so get that treated asap.
I strongly suspect that once you're off dopamine agonists, the tremor will disappear.
Go slowly. And bear in mind these drugs affect brain chemicals, so withdrawal is extremely difficult/brutal for most. But once off them your RLS will reduce dramatically in severity.Good luck.
Pregnancy related RLS is almost always an iron deficiency issue due to the shuttling of iron stores from the mother to meet the growth demands of the fetus. Your mention of SIBO is also related to decreased absorption of iron and an increased opportunity for iron deficiency. The leading cause of RLS is brain iron deficiency, but alas since BID can't be measured directly, blood tests (and specifically Ferritin levels) are all we can rely on.
I had severe RLS (and it was severe!), little or no sleep. As part of the severe symptoms in my legs, it was also in my arms with an associated tremor in my hands. I thought Parkinson's also. It was all RLS!
Iron supplements (ferrous bisglycinate chelate) stopped the RLS in its tracks, raising my ferritin from 49 to 105 in 3 months. Why was I iron deficient in the first place was probably a SIBO issue from a course of Ciprofloxicin antibiotic for a prostate infection.
Here is info about SIBO - look at the herbal treatment - very effective. Also consider adding the probiotic LP299v to increase iron absorption. Jarrow offers this also Good Belly brand of probiotic drinks.
I used pramipexole for several years and it help me a lot. Later it quit working as well for me and I switched to Gabapentin. I think this is a better match for RLS. It will work well when you find the right dosage for you. I’ve taken Gabapentin for one year.
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