In May, I decided to wean myself of 40mg citalopram which I had been taking almost continuously for 18 years. I did this with the support of my GP.
Along with some other horrible withdrawal symptoms, I started with restless legs towards in July. I’ve had this on and off over my life, and it usually gets worse during my cycle. I also have endometriosis so this seems to exacerbate everything.
All my bloods were normal. Iron was on the lower end of normal so I’ve just finished a 4-week course of tablets.
I’m awake every single night for hours now with the restless legs. As I type this, it’s gone 5am and I’ve been up since 2am. Most nights I try do do something to distract me from the sensation such as reading or listening to headphones. Nothing is working for me.
I work full time running my own business and can’t afford to be tired during the day.
I have good sleep hygiene, I exercise, stretch before bed, I eat well, hardly drink alcohol snd have no problem dropping off to sleep. I just not can’t stay asleep.
I’m worried I’ve done myself more damage by now not taking the citalopram.
Any advice on what to ask my GP to do next is welcomed.
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Teafortwo1
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Hi, no I didn’t have RLS like this while on citalopram. GP did say she thinks it’s unusual it’s now started after I’ve come off it. I don’t take anything else.
Can you give us the actual numbers for the iron panel results.UK doctors say they are normal when they are far too low.
Serum ferritin needs to be above 200ųg, ideally and serum iron above 60ųg.
Taking iron pills more than once a day is futile. Latest studies show that ONCE every other day results in better iron absorption.
Citalopram messes with brain chemicals and the dopamine system. Usually it triggers or worsens RLS.
But you have developed it after stopping citalopram.
Hopefully, as your serotonin and dopamine levels settle, it will stop.
You could try taking ferrous bisglycinate last thing at night and magnesium citrate in the afternoon.
If it becomes impossible to manage, you may need to consider medications, but whsyever you do, refuse ALL dopamine agonists. They are now relegated to end of life scenarios by top experts.
Most UK doctors know zero about RLS or medications to treat it.
You could try paracetamol with codeine because low dose opioids are effective at controlling RLS. You might only need them for a few weeks.
If citalopram has triggered RLS and it doesn't settle, you may need to consider long term meds.
But first, try to raise your serum ferritin above 200ųg/L to see if that works.
Thank you for your reply. I don’t know the exact iron numbers but I’ll definitely ask now.
I had some side affects with the iron tablets to begin with. I took one in the morning half an hour before food and then one before bed a couple of hours after my last meal. I found it difficult throughout the day at first, feeling very sick, constipated and with flu like symptoms. But I seemed to get past that and now I’ve finished what the GP gave me and haven’t seen any improvement in my restlessness.
You need to get ferrous bisglycinate ( gentle iron) and take it at night. It doesn't cause the tummy issues.Don't stop taking the iron. You need to raise your levels. And get full iron panel blood tests every 3 months to check levels.
Show your GP the RLS-UK website which has a printable page on iron therapy.
And also buy L plantaris pro biotics as it improves gut absorption of iron.
Welcome to the forum. You will find lots of help, support and understanding here.
You say your iron was on the low end but was your ferritin checked. The normal test for iron does not test this so ask. This is the first thing that should be done for RLS. So ask what your ferritin was.
If it was not tested, 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 .
Meanwhile since you know your iron was low If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, 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. 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 as more is absorbed that way, 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 calcium rich foods) 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. 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.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). 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) [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 nor calcium-rich foods 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 up-to-date on it 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, 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, 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.
Thank you for all this information. Sounds like I could have hindered the absorption of the iron tablets due to me also taking magnesium at a similar time.
The strange thing is that I do eat well and because of my endometriosis, I choose to eat whole foods and mostly organic. I have reduced my meat consumption and gluten where possible.
And nothing has drastically changed in my lifestyle other than stopping the citalopram.
Is it worth me asking for any sort of neurological tests?
Let's make sure you have RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
If you meet these you probably don't need any neurological tests but you can always ask for them. If you don't meet them then you do.
hi, yes I have read through all this information before posting and I meet the criteria. I have to get up out of bed every night multiple times. In the beginning, I was in pain in my calves but this has eased and now it’s more of the need to shake or move my legs. And the feeling often travels up my body to my arms.
my neighbour is trying my grounding mat and thinks he is getting good results. I did a google search on grounding and restless leg syndrome and it gives mixed results but is certainly worth a try.
Grounding or Earthing mimics walking barefoot by connecting an earthing mat (that you stand on barefooted) to the grounding in your home's electric system. I'm standing on one now! I also have a mat under a conductive sheet in my bed. It "could" help RLS, but alas not a magic bullet. I've used it for a year or more. It does seem to help with inflammation (knee pain).
My neighbour is still getting good results. He borrowed my mat and now has purchased his own. Do a google search on the grounding mat. I have my mat on my floor for several hours before I go to bed, I have a different problem to RLS but I have no pain while I have my feet on the mat. I also have a grounding sheet which I also bought. There are many companies that sell them, just type in grounding sheet or mat.
I’ve just seen your post and another person in a similar situation. Maybe there are more of us out there who feel like this when stoppping the citalopram!
Last night was bad. I saw every hour. Tried reading and listening to headphones to distract myself from the sensation but it just didn’t work. Even when it was time to get up at 6.30am I still had the feeling in my legs and an hour later it’s there.
I haven’t been referred to anyone. I wanted to post on here before I went back to the doctor. I was worrying that the citalopram had affected my hormones in a negative way and now I’ll be stuck like this!
Sorry to hear your having a crappy time. Not sure about hormones being affected,but the brain is affected for sure. Have you looked at the website called surviving anti depressants? It may be useful for you.We are all so different in how drugs affect us
I think if you are suffering, the Most important thing is to get relief.
Read Sue and joolslegs posts here on RLS, they pretty much saved me.
Then get off to a recommended specialist asap.
Do you have any opioids or tch in the meantime? How long off SSRI now and what other drugs do you take? Including OTC? Stress also makes my RLS worse.
Feel free to reach out here, will get help I promise.
Just remember, it's not your fault. It's a yucky disease and we are all just bloody unlucky.
My history is very similar. My RLS got worse after stopping Citalopram. I found this forum and modified my diet to reduce inflammation; I stopped alcohol, reduced sugar & refined carbs , added iron bisglycinate with careful timing; light exercise. Symptoms improved. I started gabapentin. Still good days & not good days. But average better. Lately I use a new device called Noctrix Nidra. Search this forum for more information.
Can I ask when you stopped the citalopram? It’s been over 3 months for me now with the RLS. I suppose my body will still be getting used to not having the meds I’d been on for years.
I have gone on and off citalopram and other antidepressants many times over the years, and in the last few weeks I have done it again, and after kicking, squirming, taking hot baths and twisting myself into pretzel shapes over the past week, my legs are finally relaxing some. I have found that coming off of it does cause the restless legs to get worse for a few days or a week, then things even out.
Same story but with a different drug. I was on Trazodone for a little while and then later Clonazepam. Tapering of each induced RLS and its been over 9 months symptoms haven't gone away. Sleep deprivation, stress etc. makes it worse.
I. As for exercises, the ones that work for me are: cycling, going up and down stairs, walking on inclined surfaces, squats (20+ 20+ 20...), stretching, strong contraction of the leg muscles. I wish you well.
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