Hello everyone, this is my first post even though I've been lurking for a while. I'm kinda "new" to rls, I've had flares for about a year even though I've had PLM my whole life. I'm just 31 and I'm trying to figure out triggers and such to try to avoid this painful situation.
I've recently found out that Melatonin is a known RLS trigger, I had no idea about that. I wanted to know if oxatomide is also a trigger and if there are other similar antihistamines that will not trigger my RLS.
I also take Daflon for my leg edema (which causes issues that are much different from RLS). I wonder if it can also interfere with RLS.
I also forgot to mention that I'm on bith control, the pill is called Novadien. Just want to make sure that none of my medication is making it worse.
Thank you for sharing your knowledge with me.
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Melatonin is a trigger. So is oxatomide. All sedating anti histamines will trigger/worsen RLS in genetically susceptible patients. Diuretics also trigger/worsen RLS. Stop the melatonin as it will not help sleep in RLS patients.Safe anti histamines are loratedine and cetirizine.
Discuss with your GP about the diuretic as you need to weigh up the pros and cons of all meds and clearly you need to control the oedema.
Oestrogen can worsen RLS for many. But not all. I never had RLS on birth control pills or HRT.
Raising serum ferritin above 200ųg/L ideally via iron pills or infusions is now first line therapy. So get blood tests ( morning, fasting) and ask for actual numbers.
Raising brain iron dramatically improves the majority of cases.
Thank you very much, I will be getting my iron results on tuesday but wanted to document myself in the meantime since symptoms have been quite bad. Hoping for am improvement soon
It's part of the full iron panel blood test. It's listed as percentage transferrin saturation.If it's below 25 you need iron therapy. If it's above 48% you should avoid iron supplements.
Welcome to the forum. You will find lots of help, support and understanding here.
What is normal for others is not normal for those of us with RLS.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. And some say it should be over 200 or 300.
Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption.Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
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.
For your next blood test be sure to stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.
Daflon is not a diuretic per se and from my research should not make RLS worse.
Other safe antihistamines are OTC allegra (Fexofenadine, Telfast) and prescription Clarinex (Desloratadine).
Estrogen makes RLS worse for most, however you need it for birth control.
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 others 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.
I assume you are not taking anything for your RLS?
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) or Neupro (rotigotine) unless there is some special reason s/he feels you need it. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. 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 to 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.
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 you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...
However gabapentin and pregabalin can cause leg edema for many so you need to watch for that and may need to increase your Daflon. If that doesn't work post back here and we can give you other suggestions.
I have updated my profile now. I am a 31 female and I live in Italy.
My first GP (which I have changed) just prescribed pramipexol without even asking for blood tests and just told me that "RLS is not a serious condition". I took 2 pills (on different days) of pramipexol and started feeling so dizzy that I began my research and was shocked that she would just prescribe a dopamine agonist just like that! She is young so I was hoping she was better informed. I immediately stopped and changed Gp which prescribed iron tests but she does not seem well informed either, will be going this week with the results and am hoping she gives me iron supplements.
My father has had RLS since he was about 60 years old. I began at 30 :-(.
I have always had PLM. This is my 3rd flare of RLS ever (I had 2 last year lasting a few weeks) and now since the 9th of December. I have a bad itch EVERYWHERE (eyes, legs, arms, torso, genitals sometimes too!) that only occurs in the weeks I have leg restlessness! The leg restleness that won't let me sleep, beginning at about 6 pm but many times also beginning earlier (the itch begins earlier). I have slept very poorly for the last 2 weeks, before that it was not impacting my sleeping quality.
I had started taking melatonin camomille (very low dosage) in the beginning of December but since finding out online it could be a triggered I have stopped. It's also a stressing time for me because of university exams which I suspect could be a trigger.
I have also been prescribed bromazepam which I have been taking for 4 days to sleep, I forgot to list that one. I take 4 drops and it "kinda" helps: I fall asleep but then wake up during the night. I hope it doesn't trigger RLS too?
I also am trying a sleep tracking app and will let you know.
Maybe I'm just illuding myself but I would really love to try the iron supplements before trying other therapies like gabapentin and such.
I am so thankful for the kind people who help others with their knowledge online, I feel lucky and supported.
Iron therapy should definitely be the first step. Read and research all you can. Europe is still way behind the best treatment and knowledge in parts of the USA. Doctors are not taught about RLS. They simply prescribe Pramipexole or Ropinirole.But dopamine agonists are no longer prescribed by experts. They work brilliantly at first. But then they actually make the disease far more severe and can damage dopamine receptors permanently.
So avoid.
Gabapentinoids or low dose opioids are now the medications used by experts.
Read the Mayo Algorithm and the AASM guidance.
Start by reading RLS-UK website. It has all the links to latest expert treatment.
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