I’ve had a bad RLS flare up due to over tiredness as we have a newborn. No chance of my sleep debt being reduced anytime soon, and I’m desperately trying to get some relief so the very little sleep I do get is actually restful.
So far I have only been able to get to sleep by rocking in my bed. I have Clonazepam for panic attacks and tried a 1mg tablet last night and that gave me some relief.
I have now been prescribed 0.088mg pramipexole which will arrive on Monday. I am now just concerned about taking it given all the horror stories I’m reading about augmentation & am wondering if I should request something else (eg Pregabalin, which I’ve taken before for anxiety). Keen to get thoughts from this community on what the best path might be?
Other things I’ve tried without success are Restiffic foot wrap and Therapulse
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Welcome to the forum. You will find lots of help, support and understanding here.
Definitely don't take it. If you have taken pregabalin before and not have side effects you couldn't live with, definitely go with that. If you have then you might want to try gabapentin so I will give you advice for both.
First off Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Dopamine agonist like ropinirole (requip) or pramipexole 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) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 as yours doen't or s/he would never have prescribed pramipexole at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
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. Keep a food diary to see if any food make your RLS worse.
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.
Hi there. Thanks so much for this detailed and helpful reply. I won’t take the Dopamine Agonist then although am feeling rather desperate as have symptoms most of the time now (ie in the daytime, in other parts of my body, all worsening at night).
For your ferritin 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. 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 tumeric 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.
Citalopram makes RLS worse for many people. For anxiety Buspar is safe.
Clonazepam is OK but because it has a half life of 40 hours it can make you sleepy the next day.
Please don't be tempted to take Pramipexole. It's miraculous. Until it turns on you.As you have a newborn, your RLS will probably be flaring up because each pregnancy uses up 1000mg of iron. Low brain iron is the main cause of RLS.
Where are you? An NHS iron infusion is unlikely ( poor training/knowledge and lack of funding). But you could get a private iron infusion next week!.
The Iron Clinic in Harley Street will arrange for £800. But get full iron panel fasting, morning blood tests first.
The reason most people on here are anti Pramipexole/Ropinirole etc is because we have nearly all experienced augmentation ( and it's really, really bad). Plus, dopamine agonists can permanently damage your dopamine receptors which can cause iron infusions to fail and pregabalin to be ineffective.
You could ask for 30mg codeine to settle the RLS until you can get an iron infusion
Thank you. The baby is only sleep deprivation as I am the father so no iron loss from that for me! I have shared my iron results on another comment so perhaps that will indicate if I need an infusion.
🤣Apologies. That's why we ask people to complete bios. To avoid our foolish errors.The citalopram is a known trigger and can cause severe RLS even when it has been fine for years.Your ferritin is low, so follow SueJohnson advice to raise it above 100ųg, preferably 200ųg/L.
Raising ferritin may override the citalopram. The safe antidepressants are trazodone and wellbutrin.
I take 40mg citalopram and have done for over a decade but haven’t had RLS this bad since becoming sleep deprived with the new baby. I’ll try the iron tablets I have on an empty stomach before bed thank you for your help
Your ferritin is in the general 'normal' range at 56 - hopefully that was the result from a fasting test done as Sue recommends (if non-fasting it could be a falsely high reading) - but most RLS sufferers benefit from higher levels, over 100, preferably 200, although that's not a universal panacea.
While getting to those higher levels using tablets - while worth doing - could take months, and a private infusion would be much quicker but expensive (unless you have good private medical insurance), you'll have seen that DesertOasis finds that just taking Gentle Iron (iron bisglycinate) nightly helps her and others. Worth a try, and in any case it will be a step on the path to raising ferritin.
At 40mg you are on the maximum BNF recommended dose of citalopram, and unfortunately citalopram is known to make RLS worse for many. I note that you've been on it for 10 years and RLS hasn't been as bad, but stress can do funny things.
You mention that you've taken pregabalin for anxiety in the past, and pregabalin is also a first-line-amongst-experts (if off-label in the UK) treatment for RLS - so all round a much better bet than pramipexole (or ropinirole or rotigotine).
thanks everyone for the detailed replies - what an amazing community.
It’s useful to know that my iron actually needs boosting. I’m open to a private infusion if it’ll get me relief.
One last Q though: looking at the mayo clinic flow chart, it seems to suggest that a benzo (like the clonazepam I already have) or low dose opioid is appropriate for temporary RLS. Maybe I should start there rather then any other meds given I am hopeful this will pass when the acute sleep deprivation phase of newborn parenting is over?
"Benzodiazepines (diazepam, lorazepam, temazepam, clonazepam) before sleep may be useful for occasional RLS but longer lasting agents, like clonazepam, may result in more adverse effects such as unsteadiness in the night and daytime drowsiness and cognitive impairment".
One thing that has worked for many folk is a buprenorphine like Temgesic. When I first started taking them (initially a 200ugm tablet) then I slept right through the night for 9 months - wonderful. They are very low dose opiates and are not addictive.
The Cocodamol didnt help unfortunately but I’ve been taking the gentle iron for two weeks and although my blood results (taken 1 week ago) aren’t good I definitely feel like the RLS has improved a bit
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