several people on here have had the same experience as me. I was on an anti depressant & was then switched to Mirtazapine, it seems to be the chosen drug to replace Citalopram. The original dose was 50mg & I went Manic. It was lowered to 30mg. That didn't work & now I'm on 45mg with Epillim 500 chrono. I'm stable, but still feel slightly down. At first I thought that the meds were causing my RLS but it does not. At this time I get it every night but there have been periods when I don't get it for weeks! It is chronic and even if I get to sleep I get no rest. Someone said eat a Banana, believe it or not sometimes it works. I believe it is a psychological problem as it only occurs when laying in bed waiting to drift off and in the back of your mind you are waiting for it to start, then of course it does. I would love to hear from anyone who has overcome this problem.

22 Replies

  • First of all I take it you're not in the UK - as I believe the highest dose of Citalopram to be prescribed in the UK, (according to the BNF - the drug prescribing bible so to speak) is 40 mg. That is a very high dose and really you should not have been on it!

    Secondly no its not in your head RLS for most people only comes on at rest in bed at night. IF you do believe you are getting some relief from the banana then maybe you should go to the GP and get some blood levels done.

    The mirtazapine may be causing the RLS also. Many on here will have experienced an exacerbation of symptoms using drugs such as Mirtazapine.

    Can I ask, (obviously you don't have to tell!!), have you a diagnosis of Bi-polar disorder - just going by the meds you are on? Have you had the restlessness long? Did it begin with the anti-depressants or has it been there a while?

    I don't want to give any advice until I know a wee bit more.

  • thanks for reply. Yes I'm bi polar. sorry for misunderstanding over drug dosage. All refer to mirtazapine & Epilim. I have had full bloods done, no problems there at all. I have had RLS on & off for the past 40 years, I'm 67. I live in the UK. I was diagnosed as bi polar about 15 years ago.

  • Hi, thanks for the info. First of all that dose of Citalopram was way too high. If you look at the BNF max for someone over 65 is 20mg!

    You are in the unenviable position of having to juggle your mental well-being so closely with your physical. I would speak with the psychiatrist and make sure they understand the connection between some anti-depressants and a worsening of RLS - as lack of sleep and pain can have a negative impact on your mental health.

    I'm a big believer in the placebo effect - our minds control everything so if you fully believe the banana will work it will!

    I've lived my whole life with RLS and I still cannot tell if and when it is going to hit bad. I may get a few days good, I may get several months, (and that makes treating it so bloody awkward), if anyone here knows how to tell a worsening of symptoms is coming I'd like to hear it too.

    For what its worth there are plenty here that really understand what you are going through. Hope you get some relief soon.

  • Hi Raffs,I get a warning almost every time I am in for a bad flare.It occurs about 2 -6 hours before. For me it is a short , sharp stabbing sensation.a mixture between a pain, an electric shock and an itch! It will only last for a second or two but occur several times with short intervals between each stab of around 30 seconds.I feel them on my buttocks, hips thigh area.About 30 minites before it really ramps up I get a sort of pulsating tingly pain around the elbow area of my left arm.

  • Wow, I never know until I am in the middle of a period of flare up and I can never tell how long it will last. I just have to plod through it and hope it wont go on forever, (although it seems like it is).

    Mind you 2-36 hours isn't a hell of a lot of notice, would be nice if we knew a day or two in advance and could plan accordingly.

  • Your mental problem is probably caused by the RLS and not the other way around. The excessive movement, when you try to sleep, keeps you from ever entering the deep sleep you need to rest your mind, as well as your body.

    I hate to keep posting the same information but here goes. There are 5 groups of people who have the inherited gene for this condition and they all have two things in common.

    A genetic test has proven that the five groups have an Eastern European Jewish heritage. The heritage doesn't mean your immediate ancestors were Jewish, just that an ancestor was the source of the gene. The second thing is an isolated period when marriage between distant relatives was the only way to find a mate, so every one of you became related.

    French Canadians, Icelanders, Cajuns, Applachians, and Eastern European Jews. You may not know your history but there is a genetic test and it proves the all these groups had a distant Jewish relative and the gene just keeps going.

    Finding the right meds is a trial and error process, since the companies who could find a cure hasn't even worked on it.

  • I come from peasant west Irish stock. I would imagine it would be very strange for any of my ancestors to have come in contact with any of those groups, (I can trace my people back about 150 years), as there would have been very little movement of those people into the west of Ireland.

  • You may be surprised when you have a genetic test done. My son did and found a small genetic component of Eastern European Jewish genetic material. His staunch German Irish mother insisted it wasn't possible and every one of my relatives can't believe it either. It is the origin of the mutation that matters and none of us living can know what happened between our ancestors. One person with the trait has multiplied to every person in Iceland.

  • Windwalker, RLS Can NOT cause bipolar. That is not just your every day depression. So can we please watch what we say to new people here? Bipolar is a chemical imbalance in the brain, so actually has a physical cause. Took care of my father who was bipolar his entire life. RLS can make us feel "down" and "depressed" but it cannot cause anything like a real psychiatric/physical disease like bipolar at ALL.

  • I never said RLS causes Bipolar and don't think it causes anything but depression because of sleep deprivation. I was diagnosed by Mayo Clinic as having Bipolar disorder with slight skitzophrenic tendancies and I have the worst case of RLS my neurologist who specialises in RLS, has eve seen. I am fairly knowledgable on the subject but no experts even exist. Sorry if you read something into my post that I never said.

  • RLS is neurological, not psychological at ALL. The genes for it were discovered in 2004 and 2007, zeroing on the neuroreceptors D1 and D3. When RLS is mild and at the "early stages" yes, it is only at night because it follows your circadian rhythm. Can also happen because one is not asbsorbing iron well enough, which on return , the dopamine transport system does not work as well. There is one cause. But, kids who have RLS at the age of 2 or 8 or 10, are not having psychosomatic issues. They are suffering for real, and I know because my entire family has the gene, I have studied RLS for 20 yrs, and have several online support groups since 1996. So, I respectfully disagree and can prove that RLS is not "psychological" RLS Awareness Day is on Sept 23rd, and I can assure you that the more we educate ourselves, and the more you educate yourself, you will see that while there can be many causes, RLS is NEUROLGICAL. rlshelp.org

  • "But, kids who have RLS at the age of 2 or 8 or 10, are not having psychosomatic issues".

    Unfortunately true!

    My mother would have told me that she had me at all sorts of Dr's as a child, (under the age of 4) and was told I had growing pains! There was nothing mentally wrong with me, I had been a normal child hitting all the normal developmental milestones, (although as I got older I thought there was something wrong with me as I had the crawling sensations and inability to sit still but the Dr would say there was nothing wrong with me physically!!!!), but apparently I was in a lot of discomfort with the RLS, I cannot remember going to the Drs about the RLS but likewise I cannot remember a time when I did not have it.

  • Your family sounds like mine. There are 5 groups of people who have RLS and it is well known to be genetic and the mutation that caused the genetic condition was about 3,000 years ago and the first person with the mutation was a Jewish woman. I know you don't have to be Jewish to get RLS, but the gene was passed along from generation to generation.

    In my case there were Jewish people on both my mom and my dads side, but I talk to people all the time who have no knowledge of their past generations.

    Almost every ICELANDIC person has it, almost every Cajun, almost every Appalachian, almost all French Canadians, and almost every Eastern European Jew. Inbreeding is the way it spreads, not in current times, but in the past.

  • The only way to "overcome" RLS is to treat it, like we have to treat diabetes, Parkisnon's, the common cold, etc etc. There is no one "cure", in fact there is no cure, only treatments. A cure, or a "way to overcome" it is a long way away in research.

  • I wonder, (talk about using a sledgehammer to crack an egg here), if you had RLS and had to have both legs amputated - would the RLS stop (mind you there were many nights/mornings I wished I didn't have legs!!)?

  • raffs, if you chopped your legs off, unfortunately we would have phantom RLS symptoms, then how would we pace to get relief.! As much as i dislike my legs i do need them to pace when the RLS attacks.

  • LOL..I'm sorry,It's not a funny matter,but your explanation,got me tickled.

    I was thinking the same thing,about the phantom pain, people

    experience,after having a limb removed.I can't imagine,not being able to,get up and walk,,when R L S invades my night.. Thanks..A lifelong sufferer

  • That's what I would be afraid of - no bloody escape!!

    I thought on that so many nights I would like rid of them, but did think it would be the ultimate insult to get rid and then still have the sensations. Unfortunately now I would also have to loose my arms and spine, and although I'm no Dr I would imagine that life would be very difficult like that :) - just a hunch mind :)

  • Yep, just a tad difficult i would say... :P

  • I don't believe it is a psychological problem but maybe a neurological problem. RLS is such debilitating, nerve racking complaint, it would drive anyone around the bend. It has a mind of its own and meditation, half a dozen relaxation techniques, warm milk' or whatever, absolutely do not work. The proper medication for YOU is the only key and I guess it is just trial and error. Good luck.

  • I agree, it's neurologic!!! I see a Neurologist that specializes in RLS and one recommendations he gave me is to really work your leg muscles , ride a stationery bike, elliptical, stairs. Anything, to get the legs moving and go as fast as you can for as long as you can. it helps!!! I too have to change up my meds! So happy to have founds this forum!!!

  • I take mirtazapine but am on a low dose I think its 30 mg

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