Hello, I just discovered this page and figured it wouldn't hurt to get some advice. I have been on psychiatric medication since I was 14 for OCD, bipolar, and depression. I am now 27. I never had RLS till I was on my medicine for awhile. It started slowly only effecting me occassionally. Then it intensified to only happening in specific times really bad. I went on Requip about 2 years ago at .5 then it was increased to 1mg then too 2mg. I never took 2mg till last month i used to take 1 and a half. But I had augmentation to it. I went cold turkey off all my psych meds because the side effects from all of them were RLS. I went cold Turkey on everything. For 2 nights. Then i couldn't take the withdrawls from the anti-depressant or the requip. I put myself bak on 20mg of the antidepressant which is down from 40mg. I went back on the requip attempting to lower my dose with no success. I tried reasoning with the psychiatrist for medication that does not exacerbate RLS she wouldn't change anything. I got married to go on better benefits. I am seeing a new doctor in 3 days who I beleive will try and help. I cut out caffeine. Hot showers or baths don't work. I tried conpression thats a no go. I end up sleeping on the floor most nights if I can fall asleep at all. Or on my knees on the side of the bed. I'm tired and cranky and so done. I do have low Vit D and have had a hard time remembering to rake the once a week pill. I also have celiacs but have never followed a gluten free diet.( Now might be the time) I need some advice to get me through some of the rough patches before the diet kicks in or the augmentation takes over since I cant sit anymore. Any help eould be greatly appreciated.
Need Advice RLS!: Hello, I just... - Restless Legs Syn...
Need Advice RLS!
Hi Shuby, taking anti-depressants will for most have a bad affect on RLS. But being you are bipolar then sometimes you have no choice but to take them. What is your anti-depressant called. ? Not the best idea to go cold turkey on any meds , it can give you awful side effects. Your psychiatrist should have been more understanding and try to work with you in finding what will help you with your bipolar AND your RLS If they had one night of RLS they would be thinking differently.
Celexa. I had terrible withdrawls but i know for a fact that this is one thats making it worse. The psychiatrist told me its not possible to withdrawl from it. Ive been on it for over 10 years. I know cold turkey was not best but i was at a loss of what to do next.
It is possible to withdraw from the Celexa, but you need help in doing it, it would have to be done slowly and you need to try a more RLS friendly anti-depressant to replace it. There are 3 anti-depressants that are considered RLS friendly they are Wellbutrin, Trazadone and one i will have to look up as i have forgotten it, but someone WILL know what that is on here. I hope that ONE of those anti-d's will be able to replace the Celexa for you and at least help with reducing your RLS symptoms, plus replacing the Requip (which also has to be weaned down off of slowly) with maybe pregabalin or gabapentin. Its a lot to take in, and baby steps to get there. And do the Gluten free diet with you having celiacs. Everyone varies to how long the withdrawals are with Requip, but it can take a few weeks, because of weaning slowly. Ask your doctor for Tramadol which will help, if you are in the USA which i think you are then some doctors are now reluctant to prescribe Tramadol so i hope your doctor is not one of those. Talking therapy would also be helpful for you. Good luck, and you can come on here for advise any time, lots of experienced members on here who will help where they can.
Thank you so much. I am going in prepared for my appt on Tuesday. I am more than ready to get off these medications so I am preparing myself to start getting off. I am happy to try different psych medication that doesn't exacerbate my RLS. I am also willing to try therapy. Its hard when you have been on these medications pretty much all your life.
Wellbutrin put me in hospital exacerbated my anxiety
You poor thing. That’s awful. Are you back on requip?
I’m not that familiar with antidepressants but there are a few that don’t exacerbate rls and you should definitely give those a go. I think there’s a list on the rls uk website or you could try rls.org. Hopefully your psych will be prepared to try them.
For your rls you should get a serum ferritin test to check your iron levels. They need to be over 100 - so get the actual figure - they often tell you your are ‘normal’ which can be as low as 20.
You will need to come off requip because from the sound of things you are in augmentation and requip it is making your symptoms worse. It’s not advisable to go cold turkey - it can make everything worse. Reduce gradually to give yourself a chance to get used to it. When you get to the lower doses things are going to get tough however and you will need an opioid - on a temporary basis - to get you through. Rls goes through the roof at that stage and most people go through a phase of no sleep for a few days at least (unless they have an opioid).
I hope your new psych is better and you manage to get things under control. It is possible that if you get onto an rls friendly anti-depressant, get off requip and get your iron levels up, you will get back to not experiencing rls at all. I hope so. If you have to remain on current antidepressants, you should get a different method of treating the rls than dopamine agonists.
I reverted back to requip until I got my new insurance cards. But my appt is on Tuesday with a regular doctor. I am hoping I can get some sort of help my last doctor was like what do you want me to do. He was no help. I now wish I never went on it. About how long is the withdrawl period for requip?
Hi Shuby, the withdrawal period can be long. It partly depends on what dose you were on to start off with. You should go slowly. The worst is when you get down to nearly the end and when you finally eliminate the drug. You will have bad symptoms for about 10 - 14 days after taking the last pill. Sorry I can’t be more precise - I was on pramipexole which has a different dose amount to requip so I couldn’t even advise by how much to decrease.
On another note, Elisse’s and Raffs’ reply are full of useful advice. I too wondered if it would be worth your trying talking therapies to address some of your psychiatric conditions. They can be effective for some people. I’m not suggesting they will resolve everything but at a minimum it would be worth eliminating them as a potential avenue of treatment on the basis that they do no harm.
They did try giving me miripex but I woke up in the mild of the night in sweats and had awful vivid nightmares. These medications certainly do not help someone with OCD. I lasted 2 days on it. I am open to talk therapy and certain therpaies for my pysch disorders. But being on these meds for so long I almost feel like I need some form of medication or I feel fearful. Its like a crutch. Which is terrible and I need to change my mindset.
Oh Shuby, I didn’t mean in any way to suggest a criticism of you for taking meds. I take everything I can to help me get through - I apply a cost/benefit analysis and if the med satisfies the test - I take it. We do what we have to do. You clearly have carefully considered your position and only you can know fully what’s right for you.
Just had ferritin done was 11 Dr started me on slo iron with vit c also
That's exceptionally low. Was your rls very bad? Are you on medication? If you are on dopamine agonists it is worth being aware that low iron is linked to an increased risk of augmentation so be sure not to increase any dopamine agonist meds at the moment no matter how bad your rls is - use another med instead. Here's hoping the oral iron gets your levels up quickly and your symptoms respond rapidly and well. Often increasing iron can have a hugely positive impact on rls and obviate the need for medication.
Be aware that iron levels can drop again quite rapidly in rls sufferers so you need to keep checking your levels even if you manage to get them high.
If iron doesn't increase you should consider pushing for an iv transfusion.
Many people on here speak very positively of iron bisglycinate (aka gentle iron). It can be got in holland and barrett. It's definitely worth looking for if the supplement you are on at the moment causes constipation difficulties.
Can I just add that stopping all psychiatric meds cold turkey can be VERY dangerous - not only to your mental health but your physical health also.
I am so sorry that you have had such a difficult time growing up. I wonder have you had the opportunity for some talking therapies? Unfortunately people who have long term mental health problems are left solely with psychotropic medication to dull the 'madness of the head' (for want of a better word), instead of getting to the root cause and tackle that.
Definitely check out using Gentle Iron, even with good blood levels can have poor levels in our brain where we need them.
Wean off Dopamine drugs, as involuntarydancer said, come off gently - they are very dangerous drugs imho and as such can cause very severe symptoms in us both taking and with drawing.
Antidepressants can exacerbate RLS something serious. My GP tried to get me on them, (I am not a fan of them, in fact don't like them as they prevent healing for many) but they sent my RLS into overdrive. Might be worth taking a look at getting off them if that is a possibility.
Look into Targinact. It is an opioid that is licensed for RLS and in my opinion opioids are the best class of drugs to treat RLS and am sure there are plenty on here that would agree.
GET OFF GLUTEN. You need to do that for your bowel/digestive system which is a very important part of our system and is seen as a second brain and emotional centre. Gluten is a difficult thing for many yet it is in so much food.
I went vegan in February, (had been gluten free for a long time prior), and along with a GF diet the veganism has stopped my RLS. I had it bad, terrible in fact, all over my body and so bad that it drove me to seriously consider suicide. For my entire life, even with a shed load of prescribed and non-prescribed drugs my body was never silent, (apart from taking Kratom for the first time), I have had relief but underlying the drugs my body was still ill at ease if you follow me. I might have had Neupro patch 2mg on, taken 100mg of Tramadol, had 40mg of Targinact and several pipes of cannabis which would enable me to sit but there would still be an ill at ease feeling pervading my body. Now my body is quiet. I still take the Targinact bu that is for pain issues. For the first time in my 45+ years of life my RLS is under proper control and I put that down to Veganism and Gluten Free diet; I had a burger one day I was f**ked off with things and feeling sorry for myself - that night I kicked and bounced as the RLS had flared, my answer was very clear.
Best of luck and feel free to PM any time if you need any extra support.
I know how dangerous it was but I was at a loss and I needed to do something. I am currently still off lithium and seroquel. But i had to go back on a lower dose of the Celexa because the withdrawls are so bad. I also changed the time I take it in the morning instead of all my life I took it at night. My parents were young and immediately put me on medication as advised by the psychiatrist. I never was taking to therapy. I could have benefited from a lot of therapy methods. Now I need to go in reverse and take it one step at a time to try to fix everything properly. I plan on getting myself into therapy as soon as I can get a handle on this rls. I have a lot to do but getting off gluten is now a top priority. Now will being vegan cause low iron levels and in turn possible flare up rls again?
Hi
May I suggest you watch an interview on You Tube called The Divided Mind and another one Chronic Pain is an Epidemic of Fear. I had RLS for 20 years and severe ankle pain during the same period. Both of them have disappeared. Last week I walked 4/5 miles every day without ankle supports or shoe inserts. I ate chips everyday and drank 4 pints of real ale every day plus a large glass of wine. (I was on a canal holiday) I had no medication or supplements. You can contact me for more information if you wish.
Sorry to read about your problems. I was prescribed lithium for severe depression and I went from having mild RLS, perhaps twice a year, to having severe RLS every night. This was on the lowest starter dose and I only lasted about six weeks before stopping lithium. When I next saw the psychiatrist he said I should have continued with lithium as he could have prescribed tablets to stop RLS but I have never believed in taking more medication than I really need. The antidepressant trazodone has been as effective as any in controlling my severe depression and is definitely ,for me, RLS friendly. I hope you find a solution to your problem as constant RLS without relief is hell on earth.
Glad to hear the Trazadone is working for you. 
Thank you. I was on lithium since I was 14. I know it played its part. Thank you for your suggestions. My one issue is I need to find a doctor that will work with me on my care. I hope I will get some sort of help on my appt on Tuesday.
Shuby, it is hard to find doctors who have any understanding of rls and its treatment, still less an appreciation of how devestating it can be. I would suggest arming yourself with as much information as you can in advance if the appointment about rls and what really works for it. You may find you need your thoughts straight. Often the best they offer is to increase the dopamine agonist meds which is wrong, wrong, wrong.
Make sure to discuss the role of iron with him. Getting serum ferritin levels to well over 100 results in a substantial alleviation in symptoms for a lot of people. Also make sure you have your thoughts straight about the role of the other meds you have been prescribed.
Good luck
Shuby23 I really feel for you my friend, I'm in the UK so not in a position to give advice about doctors but I know only too well the situation where they will just throw more and more of the same medication at you instead of being honest and saying they don't know enough about RLS. To so many people, including doctors, RLS is a minor inconvenience, I don't wish anyone harm but I do wish they could experience just one of our nights, things would change pretty rapidly then. I also sleep on the floor a lot, for some reason it helps a little, but only if I'm directly on the floor, no sleeping bag for example. I haven't worked out what's right for me yet so. I'm not in a position to give advice except to say that if you listen to what's said on here you will get the best advice there is. I'm on a huge amount of meds for various conditions and I try to get things changed but it's an uphill battle that I no longer have the strength of body or mind to keep fighting. I am in my mid 60s and after 40 plus years of battling first for information and then for understanding I spend most of my nights hoping for the best. I'm telling you this, not for sympathy but in the hope that you will be able to fight on your behalf and not give up. Take the advice given here, it's honestly been a life saver for me, and don't give up fighting.
Hey there shuby23. My situation is similar to yours but also quite different. I may have an answer though if you are willing to try it even though it means remaining on another medication but I am 90% sure that it will stop the RLS all together if you can take it with your other meds or even if you quit your other meds it should still work. The main cause of RLS from my research is the lack of dopamine in the brain when the levels drop as your body is falling to sleep. I had it so bad in both legs from my lower back all the way down to the tips of my toes. I had to kick my legs, stand up and walk, or lay on the edge of the bed halfway sitting up until it took hours to fall asleep. One thing that will correct the dopamine in your brain so that you don't get the RLS when you're falling asleep would be to ask your doctor about taking one or two Tylenol number 3 about an hour before bedtime. My situation is I'm on psychiatric meds that cause RLS but was also stopping methadone which is for opiate pain killer abuse and I found stopping the opiates was what caused the RLS in me. As for the psychiatric meds they did it really bad in the beginning but over the 16 years I was on them it finally tapered off till none. I would ask your doctor about Tylenol number 3 or some sort of opiate that you could take once-daily just before bedtime, I'm suggesting this because if you do research on the internet you will see that opiate type painkillers work on the same parts of the brain and central nervous system that RLS does and it will replace the dopamine that you are lacking. I'm no doctor but I've been through this many times and I tried Gabapentin up until 1000 mg nightly and it did nothing. I think the other medication you mentioned that started with an R could be something that is used to treat Parkinson's which also works for RLS but only in about 50% of patients and you must remain on it because it is a dopamine Agonist so it helps your body reuptake the dopamine that it currently has and when you stop taking it you will lack the dopamine again and your RLS will come back. I know opiates can be addictive but Tylenol number 3 taking once-daily at bedtime should do the trick and it is not a big risk if you're not taking 2 every 4 hours for 24 hours as you would after a surgery or something similar. I really hope you find peace because RLS almost caused me to commit suicide, it was so bad I can only compare it to Chinese water torture or some form of War torture that prevent you from sleeping relaxing or anything of the sort. Good luck with your new Dr I hope they are understanding and willing to work with you. I've tried everything else that others listed on this site and the only thing that worked was a light opiate pain killer. It must be opiate-based though because acetaminophen or Ibuprofen does nothing to boost the dopamine in the brain in the way your body needs it to stop the RLS. Another drug that was mentioned was pre gablin which I believe is the same thing as Lyrica which is almost identical molecularly to the Gabapentin. I also tried the different supplements that people mentioned but if it is a dopamine issue which most RLS is the only thing you're going to find will help will probably be the opiate painkillers. You may find other things that will work but they have bigger drawbacks and way less of a chance of working or curing your RLS and it will be a long waste of your time trying medicine after medicine. Take my word on this if you can get to Tylenol 3 in you an hour before bedtime I bet you anyting you would get the most relief for the least amount of work. Life should be easy especially RLS so please do your research on opiates and RLS and go to your doctor extremely informed even with bookmarks on your phone to prove what I am saying. These sites are full of all kinds of answers but most of them don't work, I do give credit to those who are trying though and RLS sounds wimpy when you explained it to somebody but the only way I can explain it is if you were forced to watch somebody scrape their nails along a chalkboard it's that kind of feeling you get but in your legs and sometimes lower back and can even go into your arms. It's a creepy feeling like bugs crawling under your skin or you just want to climb out of your own body to escape the horrible feeling.
My understanding is we have enough dopamine but it doesnt get transported to where we need it. Those with Parkinson's disease, cant make enough dopamine
Shuby ~
All these opinions are well intentioned, but please don't mess around with this... I have gone through a lot of what you are going through but each situation is very unique, and there is no silver bullet for RLS, especially when Anti Depressants are involved.
Get your doctor to write you a referral to see someone ASAP at the address below, they know your issues, they have answers.
Please talk to someone here --> hopkinsmedicine.org/neurolo...
There is no cure for RLS, but you have to get the right solution for your unique needs and VERY FEW doctors or psychologists know anything about RLS (and/or few respect the symptoms we bring to them enough to really take the time to resolve for you).
You have to solve this yourself with the advice of RLS experts, not general doctors.
I am so sorry that you are having such a hard time. RLS is no fun under any circumstances, and all the meds you were on can interact. What kind of new doctor are going to see? Have you had your ferritin level checked? I will tell you that there are so many meds that doctors try and not just one will do. It usually takes a combination of two. I will say that no matter what the doctor wants to put you on, there are two majors questions to ask that they will never tell you up front. What are the side effects of the meds while you take them and what are the side effects if you try coming off of them. I have had RLS for more than 35 years and it has been severe. Now my doctor wants me to come off Mirapex and I hear that is a nightmare. I thought living with RLS was a nightmare anyway. So, make sure to ask the doctor those questions.
Update: My appointment went well. However, where I live has passed new laws against any doctor perscribing any pain medication. So the doctor I had today is fully prepared to run bloodwork for Iron levels. He is sending me for a sleep study. Here you spend like 1 hour waiting and 5 minutes with a doctor. But today was different i spent about an hour and half. He is willing to do whatever nessacary to fix this problem. He doesn't want to throw medication at me he wants to try and figure out any underlying root. If there happens to be none or nothing conclusive he is prepared to work with me on any steps necessary to get what I need to stop this debilating annoyance. So I am getting my bloodwork done in the morning and calling the sleep place to get the study done. My next appt with this doctor is in 2 weeks. Although I didnt get an immediate solution I feel semi hopeful and worst case. I discovered I live about 2-3 hours from an RLS specialist. Thank everyone for your help I appreciate everything. Sometimes its nice knowing your not suffering alone.
Wow! Sounds like you have a good doctor! Great news! Let me guess, you’re in the States?
I fully understand not feeling very hopeful when you don’t get an immediate solution; this syndrome is hellish enough to warrant immediate solutions. Please be patient, though. You will get through this.
Keep us posted!
Shuby, so glad you found someone willing to work with you. I strongly suspect that anti-depressants (duloxetine and venlafaxine in particular) contributed to my RLS starting. I also had celiac, which I ignored. When you ignore celiac, you become less able to absorb nutrients and I was horribly iron deficient. You may see some good effect from working on being gluten free and getting your iron stores back up. I don't have any great advice in the RLS medication category because I'm still struggling to get things right myself (nor in the anti-depressant category either, lol). But it sounds like you've got a good doc and that's worth a lot. Good luck!
ncbi.nlm.nih.gov/pubmed/189...
Send to
Nervenarzt. 2008 Nov;79(11):1263-4, 1266-72. doi: 10.1007/s00115-008-2575-2.
[Restless legs syndrome, periodic limb movements, and psychopharmacology].
SSRIs are a definite no-no, as is lithium. Your doc should know this. If she changes nothing then leave, find a neurologist. They are far more up-to-date.
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