New to site after channel 5 dreadful programme

Just joined site. Have suffered from RLS for 30 years. On Ropinirole 2mg which does help but I have dreadful side effects. Worst being Hallucinations and suffer severe sleep walking and move things about the house into strangest places e.g. Folding up clothes and putting them in drawer in fridge. Lining up tablets on worktop.

Without ropinirole I was only getting about 1 hours sleep as my RLS is all day and night and I suffer in both my legs and arms. With the medication I get between 3-4 hours which is such a difference but really feel I can't cope with side effects for much longer. Looking for any suggestions at all. I'm at the end of my tether and feel really depressed

29 Replies

  • Those are certainly difficult not to say alarming side-effects and I can see why you are not happy about them. Moveover, 3-4 hours sleep, while an improvement on 1, is still not really enough and you should probably be aiming for more from your rls treatment regime.

    The process of finding a medication/medications which deal with the rls and yet have acceptable side effects can be very difficult but do not despair. It takes a degree of determination because often the first hurdle is the attitude/ignorance of many, if not most, health care professionals but if you take the time to arm yourself with as much information as possible and adopt a strong positive mental attitude you should prevail!

    How long have you been on ropinerole? Have you tried any other medications? There are other dopamine agonists such as pramipexole which you could try in place of ropinerole which may not induce the same side effects. There are also other possible treatments.

  • I have been on ropinirole for about 9 months. This is the 2nd time I have been on it as it's the only medication that has given me some sort of relief from my RLS symptoms. Pramipexole helped for a short time then stopped working as did Gabapentin and pregablin. I have tried every sleeping tablet and none work either as my RLS is so severe it was still waking me up so walked about drowsy but still couldn't sleep. I just continually pace the floor for hours Day and night.

  • Yes; I have the same experience with sleeping pills - I think most sufferers do - they just make the whole awful rls experience that little bit worse.

    Have you tried prescription pain meds for your rls? Co-codomol, tramadol or oxycontin? They would tend to be the next step, given that you have tried the anti-convulsants and the dopamine agonists.

  • My Gp unfortunately not very understanding about my condition. Very reluctant to prescribe any medication to me to relieve symptoms but I'm hoping he has seen documentary and may be bit more understanding. That's why I joined this group so I can go to my appointment next week armed with information that I can show him and maybe get something else

  • Dancer, are you still taking the ferrous bisglycinate and/or fumarate? I know it initially helped tremendously but I was wondering if you continue to reap benefits? Lately I've been hearing that in addition to the iron, that you and I take, people are getting relief with b12 and methylfolate and of course the ferrous bisglycinate. Hope you continue to be well. :)

  • Vonny, first off are you taking anything that might be making your RLS worse than it has to be such as HRT, statins, antidepressants, antacids, antihistamines, warfarin, calcium channel blockers, melatonin? I have a rule, and so far it's pretty much just my rule and that rule is that you gotta try ferrous bisglycinate (it's a highly bioavailable form of iron) before you try anything else. So for example I take one 25mg capsule on an EMPTY stomach one hour before bed. I get immediate and complete relief for one night. Many people on here do. Other people need to take the iron longer before they get some relief. And some people not at all. You can order this form of iron off of Amazon. If you like it after a night or two you MUST let your doctor know so that he can monitor your iron levels. If you know that you have an iron disorder such as hemochromatosis then you shouldn't take iron.

    Now mind you I have really healthy iron stores and a great red blood count. Yet those healthy iron stores do not stop me from suffering from RLS. And despite this fact, that ferrous bisglycinate that I sneak my brain at night (we with RLS all have anemic brains not really bodies) helps completely.

    Good luck

  • I am in antacid tablets but couldn't do without them as I have a hernia but didn't realise they can exacerbate my RLS. I have actually just been to have bloods done and my iron level very low so due to start medication next week for that. Will b interesting to see if it helps symptoms. Thank you for the advice

  • I too have a hiatal hernia and heartburn and will sometimes take antacids like Tagamet but only during the day. I HATE heartburn. It actually forced me to lose weight because I know that when my belly fat is less then my stomach doesn't push up into my esophagus as much and then much much less heartburn. Plus I try not to bend over or strain after meals.

    You're low on iron. Your doctor will prescribe you the cheapest iron because doctors think all irons are alike. And that may be true for the non-RLS world but for us I believe the ferrous bisglycinate is the only one to take. And your doctor is probably unlikely to know that researchers are rethinking how to dose with iron. They find that more iron is absorbed if it is NOT taken several times a day. Actually, they think an every other day dose is ideal. Sadly, some of us must take it every night. Based on what researchers have found - if you take the iron in the morning then less of your night time dose will be absorbed.

    So it sounds like the sooner you take the iron the sooner you may get some sleep.

  • Hi there, I used to be on ropinirole it made me feel.sick.though,but since I started tramadol slow release my legs have been good I get the odd night here an there hope this helps :)

  • Yes; like looloo says, Tramadol may be of help for you given your trouble with the dopamine agonists and anti-convulsants. However, as you clearly anticipate, many GPs are reluctant to prescribe it for what they perceive to be a relatively trivial condition. Tredlight is also correct to warn you to look out for any exacerbating medications.

    If you can run to it, it is very helpful to have a copy of Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening (can be ordered off Amazon). It is a proper medical text and is written by some of the leading world experts in rls. It will show your GP how serious you are and carries stronger credentials than 'I read it on the internet ...' (that is not to knock the internet; I have learned more from reading other peoples' experiences on this and another forum than even from that textbook - it's just that many GPs react impatiently when internet based information is quoted).

    Raising iron levels is very important for the majority of rls sufferers and low iron levels will likely make your symptoms worse if not much worse. Unlike Tredlight, taking iron bisglycinate in the evenings does not make any difference for me to the onset of symptoms that particular evening - however it is worth trying it that way as there are at least two or three others on here who find that iron bisglycinate taken at the onset of symptoms has a beneficial impact on the symptoms then and there - or within half an hour or so.

    For me, raising my overall serum ferritin figure (over a period of months) by taking oral iron has, I think, made an appreciable improvement in the severity of my rls. I use a combination of ferrous fumerate and bisglycinate - you need to take the fumerate with vit C (orange juice) and either is optimally taken on an empty stomach. For me, it doesn't matter what time of day I take it at.

    There is virtual consensus on the importance of iron (although there is a minority of sufferers for whom iron makes no difference). In relation to every other recommendation I have seen you will find a difference of opinion as to whether it is effective or not - or at least a difference of experience. The only other theory that unites sufferers is the soap in the bed myth (and even with this I am going out on a limb - we may find the thread kidnapped by militant pro-soapers who swear by that and nothing else).

  • Thank you so much for all the sound advice. Really appreciate it. Feel more confident about going to GP now. Definitely going to give iron a try. Not so keen about using Tramadol but if iron doesn't help then I know I may have to give it a go as can't continue like this

  • Hi Vonny, I failed to tell you that I try to take the ferrous bisglycinate on as empty of a stomach as possible and I prefer taking a larger dose before bed then splitting it up. I just want to make sure you have a good iron experience :)

    Not overwhelm you with information but there something very interesting about iron that I only learned in the last few months. I've always known that there are two types of iron, one from plants and one from animals (called non-heme iron and heme iron) and the part I didn't know is that they are digested and absorbed from the GI tract in two completely different ways. I have both kinds of iron and feel that the heme iron (the brand name is Proferrin) might provide slightly more relief. Could be my imagination. I also have the transdermal iron patch called "PatchMD Iron Plus." The patch does not provide as much of an initial punch but I feel I sleep deeper and longer with the patch. Once again this could all be my imagination.

    My point with all of this is that you have OPTIONs with the iron. If you don't get immediate relief with the kind you have now think about trying another kind. We want you feeling good - from day one - as you drawn down on the DA.

    And as you know, as you take less of the DA, and eventually none, your receptors will reward you by up-regulating with each passing day. I would wish you luck but with iron you don't really need luck. Go forth...

  • Thank you. I feel so much better psychologically if not physically. So looking forward to finding something other than Ropinirole to ease my symptoms. It's been many years since I felt this positive about myself as the RLS has constantly taken over my life but now my GP more understanding I now feel I'm going to take control of my RLS instead of the other way about

  • Well wait a second, glad about your mindset but exactly how much better are you feeling physically? And what do you attribute that to? Have you started iron and if so what kind. These details will help countless others.

  • RLS is like the little mouse that roars. So I think. I think RLS symptoms are triggered at night because we're missing a few molecules of iron. Clearly that night time drop in iron does not bother the non-RLS, and so as Dr. Early pointed we have genetically lousy dopamine receptors most likely due our brains' inability to store a little iron for a rainy day or should I say a rainy night. I say so what. So I'll give my brain a little extra iron at night. And by day I will try to up-regulate my receptors with natural dopamine antagonists. As I've said on here before, if dopamine agonists can down-regulate our receptors then why shouldn't natural, short acting dopamine ANTAGONISTs taken during the day up-regulate them? Hmmm?

    Well that's for another day. Maybe even another lifetime since I don't know anyone else pursuing this cockamamie idea.

  • Can't tell yet whether the iron working as still on full dose of Ropinirole as per docs instructions for 1st week. We agreed that the only way to tell if iron was making a difference whilst reducing dose was to take both for 1st week on full dose then reduce Ropinirole in half and see whether or not I notice any difference then take it from there. Because my side effects have been so bad on Ropinirole he thinks that it's better I stay on it for at least another couple of months and come off slowly as he believes I could have severe withdrawals otherwise. He has put me on Ferrous fumarate 210mg 3 times a day

    The only negative I have is the first night I started the iron my sleep walking was horrendous and I woke to find I had rearranged nearly the whole kitchen so I had mad dash round to put things back in place so my family wouldn't know. Seem to have been ok since that night though

  • Well wait one minute again. You were only getting a few hours of sleep with the full dose of ropinirole and you were getting RLS during the day. Has the iron given you a few more hours of sleep at night or banished the daytime symptoms?

  • And if the fumarate is not giving you relief then I would think (you don't have to act) about buying some of the ferrous bisglycinate. You would then actually have the rare opportunity of being able to do a compare and contrast. I am so grateful everyday that we have the choice of so many bioavailable irons at our disposal. Unfortunately I do not feel that fumarate is as bioavailable as the bisglycinate or the proferrin. Proferrin might be the most bioavailable of all.

  • I'm still only getting bout 3-4 hours sleep but what I have noticed is I can lie and rest for about an hour once awake which I couldn't do before. Other than that iv not noticed any change but since I experience augmentation with the Ropinirole then not really expecting to notice a difference until dose gets reduced.

  • Hope springs eternal with me. Bganim 1947 (I suggest reading her story) was getting full body RLS day and night while on 12mg of ropinirole. The ferrous bisglycinate took away that full body RLS with the first pill. I had full body RLS (more like seizures) from melatonin and the bisglycinate silenced it completely.

  • I stay in UK can my doc prescribe ferrous bisglycinate if fumarate doesn't work?

  • Not sure. Not sure your doctor will know that bisglycinate is more bioavailable than fumarate and may insist you stick with the fumarate. You do not need a prescription for iron but you do if you want insurance to pay for it. When you have an extra $10 laying around you can buy the bisglycinate off of Amazon. I buy Solgar's Gentle Iron for $10 for 180 tablets. So not cheap and if you don't spend about $40 Amazon will charge you for shipping. I find it oh so worth it and I thank the iron gods everyday for the bisglycinate.

  • My GP has told me he is willing to prescribe to me any recommendations from site if it's within his power after my app last week so will c how I go with fumarate once Ropinirole reduced and take it from there. Thank you once again for the advice. It's been priceless for me and my relationship with my Gp

  • Also I can honestly say if he isn't able to prescribe it and I bought it and it worked I would pay any amount to relieve my RLS. I would give up other things to fund it if need be as no price can be put on quality of life

  • Ok so when you run out of fumarate or you're feeling wild and crazy here is site:

    Sure hope I copied the whole site.

  • Bastards, the shipping would be $5. Almost as much as the price of the iron. I resent that.

  • Thank you

  • Hi Vonny8 I buy Spatone with Vit C with my GPs agreement. It is water with a high natural iron content from Snowdonia. It'stocked in most supermrkets. AsTredlight says,tke n n empty stomach before bed. My rls has much improved during the last week but I have been taking Spatone for months. Don't know if the iron is the reason for my improvement.

  • I found it a really big step to entertain using opiate type drugs. It was only the severity of my symptoms that got me over the hump. I consoled myself with the thought that they have been around in one form or another for an awfully long time and if you resign yourself to a level of dependency (which was present in any event for me when I was on pramipexole), they are relatively unobtrusive. In any event, the contrast between life on opiates with life suffering from rls meant it was really no contest.

    They do have their own problems - I took oxycontin and experienced considerable nocturnal alerting - would lie awake all night - mellow but not asleep. It also caused central sleep apnea. However, even though I am just emerging from a difficult period of withdrawal from oxycontin (am constantly experimenting to find the minimal amount of drugs), I have no regret about letting it into my life. It was the start of my journey to understanding and finding an optimal treatment regime for my rls.

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