Heavy eyes and no sleep

Heavy eyes and no sleep

I have had RLS since I was about 5 years old. The past 5 years I have been on requip and mirapex, they have stopped working and they added gabapentin and that caused my legs to swell every time i took that. We are now to neupro and getting off the others. I am having bad withdrawals and my legs are crazy legs all night long. Anyone know what can done to help with the withdrawal ?

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  • You have to reduce requip and mirapex very slowly and during the withdrawal period you will need opioids like tramadol or oxycontin to get you through the difficult time. What dose of dopamine agonists are you on at the moment. What other meds are you on?

    Gabapentin will not be effective during withdrawal but may start to work once you are through it. Gabapentin does cause oedema ( swelling ) particularly in the lower limbs and the abdomen. I think the only way you can try to avoid it is to reduce all salt and cut down on carbohydrates ( that has worked for me).

    You would be better to get off all DA's first ( including neupro), try an alternative med non DA once through withdrawal ( the gaba may be effective at that stage or you may need codeine or tramadol or oxycontin) and then later ( say 3-4 months) you could try the neupro again at the lowest dose.

    Stay strong as once through withdrawal, you will find the crazy RLS will dampen down enormously.

    Also get your serum ferritin tested and if below 100, start taking ferrous bisglycinate at night either in pill from or in patch form ( you can get it on Amazon or direct from Patch MD in the USA)

    Take care,

    Jools

  • Thank you so much. I am on 4 mg. Requip twice a day and .25 mirapex 3 times a day. I take Lunesta for sleep but still only get 2-3 hours sleep and it makes my legs start going crazy and makes me hungry. Do you know of anything that you can take for sleep that won't make my lags crazy?

  • Whoa you are on the highest recommended dose of requip AND the highest mirapex dose so no wonder you are going through such a difficult time. The crazy legs is clearly Augmentation from such high doses of dopamine agonists.

    You need to reduce both very slowly and you will definitely need a strong opioid to do that. Sadly, you won't get much sleep until you are off the DAs but something like tramadol will help you sleep initially. I am not going to lie, it is going to be very, very hard to get off such high doses of dopamine agonists. I can't believe your doctor prescribed both together at such high doses. It shows that he/she does not understand how dopamine agonists work and that they cause augmentation.

    Search Augmentation on this site and you will see lots of people have experienced it. It's where RLS symptoms get worse, start earlier in the day and move to other parts of the body. Most doctors are unaware of it and just keep increasing the dose of DA meds ( which is what your doctor has done).

    Go back to your doctor and ask them to look up augmentation and ask for opioids to get you through withdrawal. The rls-uk.org/treatment/ website has a lot of info on this subject. Sleeping pills won't really help at this stage but once you are through withdrawal, they can be useful.

    Read everything you can on this site and rls-uk , print off info that is relevant and take to your doctor. The more knowledge you have, the better you will be able to get through withdrawal.

    Really feel for you as a lot of us have been where you are and know how awful it is. We have been helped by the wonderful people on here like Pippins and Elisse. There is light at the end of the tunnel and you will get there.

  • I'd be careful suggesting somebody offset withdrawals with opioids and possibly start the ball rolling on years of opioid addiction which itself causes RLS when you miss doses or try to stop..

    I would try some Magnesium L-Threonate and or CBD oil.

  • You are a very rare creature to have got through DA withdrawal on just Magnesium and CBD oil. The vast majority will need opiods.

    I am simply repeating expert advice given to me direct by DR Mark Buchfuhrer during my own DA withdrawal and contained in " Clinical Management of Restless Legs Syndrome" second edition by Lee,Buchfuhrer, Allen & Hening. Strangely ,they don't mention magnesium.

    CBD oil without THC won't help and it's illegal with THC here in the UK.

    There is a difference between addiction, dependence & tolerance.

    Most people on DA's are effectively addicted to them as well as being dependent & tolerant. Withdrawal from oxycontin at low doses is not as difficult as withdrawal from DA's. That is clear from the evidence on this site. People will have to go through 2 to 3 weeks of little or no sleep with constant RLS spasms during DA withdrawal and the opioids will help reduce the RLS and allow a little sleep.

  • Well said Jools !!

  • Sorry, but that is complete and utter rubbish. Magnesium will NOT help those of us on this site who have SEVERE refractory RLS. You may be someone who has mild, occasional RLS and in that case magnesium may give you relief. It will not help us except as a help for constipation caused by the opioids we have to take to get any sleep and any quality of life.

    For those people who have been on Dopamine Agonists at high doses for years, augmentation and withdrawal is pure hell.

    To quote the experts ( clearly not you) who have studied this condition and researched it extensively

    " Most patients will need a potent opioid ( methadone, oxycodone) to treat the dramatically worsened RLS symptoms created by the withdrawal of their dopamine agonist" Page 183 Clinical Management Of Restless Legs Syndrome.

    Quod Erat Demonstrandum

  • There are more than 20 different types of Magnesium on the market. The type of magnesium i'm talking about Magnesium L-Threonate doesn't help with constipation whatsoever. It works mainly in the brain and central nervous system and is able to cross the blood/brain barrier to do that.

    By the way, I'm a former opiate addict of 14 years. My addiction started when somebody gave me some to help with my RLS.

  • I take both L-Threonate and citrate. I am sorry that you are a former opiate addict but, if given under the supervision of a qualified doctor and monitored, it is very rare for those with severe RLS to become "addicted". Congratulations on overcoming your addiction.

    Most people are "addicted" to DA's. I am not being irresponsible in recommending the use of opioids to get through withdrawal. If you read the posts on here about augmentation you will see that a lot of people are close to breakdown and have seriously considered suicide while going through DA withdrawal. Opioid use while getting through that stage is a life saver. Gabapentin can then be used but it does not work for everyone and so other drugs have to be considered, particularly if the RLS is severe and refractory.

    I am not advocating everyone should go on opioids, I am simply repeating the current expert views on getting through DA withdrawal.

  • mr penguin, the experts that deal with RLS every day, and dopamine withdrawal is so very common. The usual thing is to use a low dose opiate, especially for these people who are on such horribly high doses. magnesium is not going to help that level of Dopamine Withdrawal Syndrome. Or actually any level of DAWS, It is widely accepted in the RLS community that an opiate is needed, and one has to wean very sloooooowly as Jools says. The US and UK RLS Foundations will back this up and Jools has already told you about Dr, Buchfuhrer. Clinical Management of Restless Legs Syndrome is still the "RLS bible" as far as books go, and delves into all of this. Highly recommend it for anyone. AND, RLS is not muscular, it is neurological, and has to do with the dopamine transport system in the spinal fluid to our neuro-receptors that get "blocked" when we have RLS. Magnesium is good for leg CRAMPS, which ARE muscular.

  • I'm not sure where you are getting your information from but Magnesium is crucial to nerve transmission.

    L-threonate boosts magnesium levels in spinal fluid and the brain. L-threonate crosses the blood brain barrier. it's not like any other magnesium.

    thehealthcloud.co.uk/look-m...

  • Also, Page 206 of the same book states the following about high potency opioids

    "Tolerance and dependence should occur infrequently and these drugs should not be withheld due to their stigma as dangerous and addicting narcotics. Patients typically do not escalate their doses rapidly and tend to remain stable in their opiod dose levels with little change with use for a decade or longer"

    So please accept that those of us on here with severe RLS ( every day ) will not end up as drug addicts and we have no choice but to take opiods to give us sleep and quality of life.

    And before you go on, I take magnesium threonate every day and have done for over 8 months. It hasn't stopped my RLS which still breaks through on a daily basis.

  • I am going to use all of this, Thank you. My Drs. should see all this information.

  • jools, is there any way you can copy and paste some of that page for me so that I can print it for the Dr.

  • I have a hard copy of the book so I haven't been using a website to copy the info. I'm more than happy for you to copy and paste all my replies from here and if your doctor needs the ISBN of the book it is

    978-1-932610-88-8

    It is available to buy on Amazon or from pcibooks.com

    Clinical Management Of Restless Legs Syndrome by Hochang B Lee, MD, Mark J Buchfuhrer, MD, Richard Allen, PhD, & Wayne A.Hening MD Second edition.

    Hope that helps

  • That is great, thank you very much.

  • excellent! :) I have the same book, gave it to all my doctors, too. I have tried every med on and off the list for RLS, and if not for the opiates that are used for my back and neck and RLS, I would be in padded room. When people with RLS use opiates, or legitimate pain patients, addiction does not usually happen, since we are using them as prescribed. Some people cannot use them, but it is far from irresponsible to be suggesting them for DAWS, It is what is done by doctors who know how to do it.

  • Muscle contractions are not RLS which is what this article suggests.

  • Great book to have Jools, :)

  • my thoughts on the difference between addiction, dependence & tolerance are the same.

  • Rubbish- very wrong warning.

  • mrpengiun, one time i would not suggest taking any opiods is if someone has a addictive personality or has had a opiate addiction in the past. All the RLS experts recommend taking opiates while withdrawing from a dopamine med. So, we are actually just passing on the experts advice to those who are going through augmentation. Of course if you miss taking a dose of any med you take for RLS not just a opiate med you will have your RLS come back immediately, its always there even when we take meds the meds only control it.

  • I will have to try the Threonate. With my doctor's permission I have been taking two iron bisglyinate pill before bed and stopped the codeine after two nights. I don't know the exact number but my ferritin was around 100 before starting the iron. DdGregg there's someone on here either Bac or Bkc ? that can tell you about his experience with iron and withdrawal from mirapexin.

  • Iron rarely will help at all with withdrawal from the dopamine meds. Iron takes a while to build up, and, while I know there are shorter acting irons as well as others. dopamine withdrawal is likened to withdrawal from cocaine, so it is a very serious thing to deal with.

  • That is way more than the highest dose for Requip if you are taking 4 mgs of Requip twice a day. That is 8 mgs and the highest recommended therapeutic dose now is 2 mgs of Requip in a 24 hour period. Search "augmentation" on this site and down thru these comments. You are augmenting, more is not better when it comes to RLS and treating it with the dopamine meds, and the added Mirapex is also dopamine and is just adding "insult to injury".

  • I know everyone on here is from all over but you guys are great. The tears I can not stop or this pain but I will be very powerful with the neurologist tomorrow because of your help. I may be on here at all hours of the night tonight but I hope he helps me. Just wanted to say Thank You so much. I am Touched by you all.

  • You have found yourself a good group. I was in similar position to you a few years ago so fully appreciate what you think are going through x

  • Yes I have, you guys are the greatest, took a long time to find you but at least I found you.

  • for what it's worth, Requip, Mirapex, and Lunesta all exacerbate symptoms for me.

  • I know that the lunesta does for sure.

  • Wow, it really shouldn't. The dopamine meds make RLS worse when the dosing is too high.

  • can you tell me what are none D/A. are, Only I've never heard of any in England,

  • Non DA's would be all medications used for RLS which are not dopamine agonists. So gabapentin, pregabalin, codeine, tramadol, oxycodone and any others like diazapam.

  • Connie, you are on Tramadol, at least last thing i knew. ANY med that is not a dopamine med is a "non DA med". :) DA meaning dopamine agonist. Jools is absolutely correct.

  • Jools has said everything that I would say. It cannot be said better that she has put it - well done Jools. If you want replacement medications to be effective you need to get the d/as that you augmented on well out of your system first. It is a difficult process and you will need the opioids if you do not want to experience the horrendous nights of RLS while withdrawing. I would not even try gabapentin or neupro until you are well finished the withdrawal from existing d/as. I would also recommend getting serum ferritin levels checked as Jools also recommends.

  • I really appreciate all of you. I will stop all of the meds. Do you advise me to call my dr. And ask for something for the pain, they took my blood on Tuesday to check all levels of everything he could. I have nerve damage happening in my feet also and no answers yet .i never had anyone to talk to that had this so severe. Thank you again and all help is much appreciated.

  • Hi I am appalled that your doctor has put you on two dopamine agonists meds at the same time! Plus both are higher than the new recommended daily doses. I reiterate everything Jools has said and you must wean down very, very slowly as stoppinga dopamine agonists normally causes a worsening of RLS symptoms.

    Good luck keep us posted on your progress x

  • OK, I talked to the dr. this morning and he refused to give me anything. He said to not take anymore requip or Mirapex at all and put 2 of the 4mg patches on tonight and I see him on wed. to go over the blood work, 12 vials was not enough the other day, now he wants more blood today.

  • Oh no! ! The maximum recommended daily dose of Neupro patch is only 3mg. The 8 mg your doctor has prescribed is NOT a RLS dose it is a Parkinson Desease dose. If you have augmentation and it sounds very much like you do then you need to find a new doctor who will help you to get off the Dopamine not prescribe even higher doses of it. So sorry your doctor is totally ignorant on how to treat RLS. I understandthat in the States it is much easier to switch doctors than here in the UK. I am still trying to find someone to help you..I am fuming on your behalf I have contacted Nightdancer as she is in the States and we are doing our very best to find a reputable doctor in your area just hang in there x

  • Thank you so much. He is now checking to see if I have Rheumatoid Arthritis

  • I agree on the "NO!" from Pippin 1,000 times over. Your doctor does not even have any idea how these meds even work.

  • Don't stop suddenly. Reduce slowly over at least one or two months. Yes ask your doctor for tramadol/codeine. It's not for pain, it's to reduce RLS severity.

    Ask for serum ferritin number. It should be at least 75 for people with RLS.

  • Dr. Early wants ferritin levels above 100. Mine was 70 initially when I first saw him.

  • You HAVE to call your doctor and tell him that this treatment he is giving you is totally unacceptable. Withdrawing from the dopamine meds is a long slow process. You cannot just stop them, must wean off slowly, sudden stoppage of these VERY high and appalling doses would result in insufferable RLS, I can promise you. I am shocked at the doses you are on! He is giving you Parkinson's doses, and there is a very good reason why there is lower dosing for RLS with the Parkinson's meds. Parkinson's is actually caused by a lack of dopamine production, therefore higher doses are needed. In RLS, we actually have enough dopamine, but it cannot get past the neuro receptors that pick up the dopamine and are supposed to transport it to your brain. But, in RLS, the neuro receptors D1, D2 and D3 do not operate in the way they are supposed to. So, there is absolutely NO reason to flood an RLS brain with that much dopamine. The meds that should be helping you are making it worse now. It is called augmentation.

  • Ddgregg, i am saying the same as the others. Your doses of both of your dopamine meds are way to high!! The Lunesta is the only med that you are taking that will not make your RLS worse. BUT, until your have weaned right off those dopamine meds the sleep med will not work. Yes, talk to your doctor it sounds like he/she needs to know about augmentation alot of doctors do not know. If you can take some info into him which explains about it then even better. You will need a strong pain med to help with the withdrawals as you very very slowly reduce those DA's. just as the others have said to you. Good luck.

  • Thank you all very much. I have been so discouraged and gone from dr to dr and they look at me like I am stupid. My dr looked it up on the internet right in front of me. I just saw the neurologist on Tuesday and he was very upset about the meds also. I appreciate knowing that I am not alone and someone who believes me. I will take everyone's advise seriously. My dr said that it has taken over my life and he is pretty much right . Thanks again to everyone.

  • We are here if you need us, Lots have gone through augmentation on the forum so you will get support.

  • Elisse, when the neurologist asked me to describe the feeling, I was not able to put it in words.

  • It is sometimes difficult to find the words that do justice to the misery of RLS without sounding hysterical.

    When you get the results of your blood tests, make sure to get the actual figure for your serum ferritin. Usually they will just tell you it is 'normal' but that is not good enough - press them to give you the actual figure. What is normal for us is different to 'normal' people.

    You have been given excellent advice here. You are definitely in for tough times ahead but it is definitely worth it - you are about to take control of your condition and ultimately this will empower you to achieve the optimal treatment for yourself. With RLS even highly qualified neurologists are often relatively ignorant and it is very important to educate yourself as much as possible to make sure you are not prescribed inappropriate medicines.

    You will need to be very strong with your doctor and insist that you get an opioid medicine to help you through the withdrawal process. With the doses you are on it will be very tough otherwise.

    Very best of luck.

  • I just wanted to ask if going through these withdrawl can make you feel depressed? Not feeling myself lately and very sad.

  • YES, dopamine is the "happy" ingredient in our brains. RLS is depressing enough, but when you cut down on the dopamine your brain has to physically adjust.

  • That is common not to be able to describe RLS. The best thing is to say it is an urge to move that you cannot control, and feels like you are being pulled from the inside out. I also use the term "an explosion of electricity".

  • Absolutely. You will feel depressed, scared, anxious, sad and worse BUT it will pass once you get through withdrawal. There will be times when you really don't think you can do it ( all of us who have been through it feel that way) but you will surprise yourself . If the doctors had any idea what withdrawal was like from these meds, they would never have prescribed them to us. I have sat in the doctors in floods of tears several times when getting off ropinirole and she looked at me like I was a complete time waster. She really had no idea how traumatic it was and what torture RLS can be. She had the cheek to say " I get that sometimes, but we all get aches and pains as we get older". I felt like telling her that she wouldn't be able to hold down a full time job if she had severe RLS and was going through ropinirole withdrawal!

    Stay strong & stay positive and you will get off these drugs.

    There's always someone on here to answer questions, listen etc,

    Night

  • elisse. I joined this site as I thought I might be starting with rls but now realise its periodic limb movement. I'm trying to find a uk support group like this but not having much luck. You seem quite knowledgeable I don't suppose you could point me in the right direction.? I read the posts on here and feel everyone's pain as when you have something that carnt get fixed it makes you feel very low. Thankyou.

  • 70% of all RLSer's also have PLMD. Both conditions are treated with the same meds.

  • Hill, all groups have people who either have just RLS or just PLMD or both. There is no group that i know of that is for just PLMD. Lots of members on here have PLMD so you should get help and support on here. Just reach out and ask how people deal with their PLMD. :)

  • Last night was awful, I cried and walked the floor and then just sat on the side of the bed shaking me legs for hours. I wanted so bad to go to the E.R. because I just can't take it. Right now it is still going on. I am calling the Dr. in the morning and letting him know that I need something, this is so bad and getting it through to the dr. is nearly impossible. Thank you guys a lot and you are so right, this is not going to be easy. My husband is a truck driver and I told him last night it is a good thing he won't be home this week because I am so irritable and do not want to talk on the phone nor hear the tv or radio.

  • You can get codeine over the counter in Boots today to help you through tonight. Ask for Solpadeine Max in the pink tablets. They contain codeine and paracetamol. They will help and take them every 4 hours during the night until you can see the doctor. They will help a little.

    We have all got to that point of wanting to go to A&E. My hubby was distraught seeing me pace up and down shaking from head to toe BUT the doctors in A&E have NO knowledge of DA withdrawal or how to treat it so you will just be stuck in a huge queue in despair.

    Tomorrow, Insist your doctor give you Tramadol to get through this withdrawal.

    Thinking of you

  • Thank you, can you tell me where I can buy that? I have never heard of it but I really want to find it. So many people have this, I don't understand the Dr. thinking I am crazy. The crying is just nonstop.

  • I've just replied to you as I realised you must be in the USA. You can't buy codeine from a pharmacy over there. I thought you were here in the UK. Sorry about that.

    Is cannabis legal in your state? If so, buy some as it will help at this stage. Make sure you ask for a low THC strain and one that is sedating.

  • No is isn't in my state. But right now I wish it was. I have had a fractured ankle for a year now, it was like pulling teeth for the dr. to give me Norco for pain twice. I don't wish this on anyone but if just one of these Drs. here went through this for a week, they might get what is happening to us. But when I see a new Dr. I ask if they very much knowledge of RLS and they say yes. Wrong answer, they don't.

  • I really understand what you are going through. I couldn't stop crying during withdrawal and I'm not the sort of person who ever cries. The only thing I can tell you is that it will stop and things will get better. You just have to believe that.

    Print off everything you can on here to show your doctor tomorrow. You will only need the strong opioids during the withdrawal stage and after that, pregabalin or gabapentin encarbil (Horizant) will probably reduce the RLS.

  • Oh and I broke the law during withdrawal and asked my teenage kids to get hold of some illegal cannabis for me. I don't even smoke but it did allow me about 2/3 hours relief from that horrible all over body RLS and a couple of hours sleep.

  • I know what you mean. Right now I want to hurt a dr.

  • See if you can find doctor that specializes in sleep disorders instead of plain old neurology. Many neurologists don't even have a clue about RLS.

    What state are you in? Any Sleep Centers?

  • I am in Missouri. I had a sleep study done and I do have sleep apnea but they also said that my leg movement was really serious.

  • So they know it's seriousbut don't have a clue as to how to treat it? Is there anywhere else you can go for this?

  • I have met one dr. that was very knowledgeable about this when I lived in Texas. He is a sleep study dr., he was a dr. in the military and he knows so much about this. I tried to get a phone call in to him but it is impossible. I think I am going to have to ask the neurologist to send me to a pain management dr. because I will not go back to my primary care dr. again. I need a new one.

  • That's awful!

    Keep trying to find info and be armed with it when you do go to see someone.

  • Oh I will be, you all have helped so much and now I will not be talked down to again like I am an idiot. thank you

  • So, then you not only have RLS, you have PLMD and sleep apnea, the triple whammy. You are not getting any restorative sleep at all. :(

  • Regarding the Solpadeine Max, just remember not to take more than 8 in any 24hr period and with at least 4 - 6 hours between each dose.

    I hope you get some relief soon

  • Just realised you must be in the USA as you mentioned the ER.

    You won't be able to get codeine from a pharmacy in the USA without a prescription. I know they have also tightened up rules on prescribing opioids as well because of the people abusing them over there and the consequent rise in heroin addiction.

    Your doctor should refer you to a specialist if he/she doesn't feel able to prescribe opioids to get you through this withdrawal stage.

  • Yes you are right, nearly impossible to get. I think I am going to go to his office tomorrow instead of a phone call. I really can not do this. I am losing my mind and I can't even think clearly. Thanks again so very much.

  • My husband just told me to have a drink. He just doesn't understand that alcohol makes it worse too. That's another reason why I don't drink besides not being able to stand the taste. lol

  • I wonder is kratom legal in missouri? I find it very effective for my RLS - more so than marijuana for example. I know you can order it in the US by post from various websites. It might be worth getting hold of some while you sort out your medical care. The best strain for RLS is red vein borneo and you take about half a teaspoon dissolved in grapefruit juice for starters - see what that does. I find I need a full teaspoon but it is effective at that dose.

    Alcohol will make everything much worse.

    I often wish that I had spent one night emailing my sleep consultant every few minutes through the night with my latest update when I was withdrawing from pramipexole so that in the morning she would be swamped with emails. It might have helped her to appreciate what I was going through when she refused to help me coming off dopamine agonists. If you are really angry with your doctors you could consider it - a sort of real time report on one night with post augmentation RLS.

  • I honestly love your idea. I am just down and out MAD. If they don't know anything about it, then just don't hand out a script. But they would not want anyone to think that there is something they don't know about. I am going to look this up right now and see if I can get this. Thank you

  • I 100% agree with everything Jools has said on this thread.She really knows her stuff and is an amazing group member.x

  • Ddgregg61 where abouts are you im the States i have lots of contacts and with a bit of luck someone may know of a good doctor in your area ?x

  • Harrisonville,

    Missouri

  • Ok I will ask around for you.x

  • Ddgregg61- how far are you willing to drive, and I am going to send you a private message, so we can see about finding you a doctor with half a brain, preferably one with a whole brain!

  • Jools is right on the money with her answer. You were on , or are weaning off 2 dopamine meds if you were on both Requip and Mirapex. And, Neupro is time released, and is also a dopamine med. So, I dare say you are augmenting, and also are going thru DAWS, Dopamine Withdrawal Syndrome. There is no need to be on 2 dopamine meds at once, unless one is a short acting one and one is a slow release one. Will read down thru the comments to see if you gave what doses you were on. Withdrawal from dopamine meds can be awful, as you say- crazy legs will happen.

  • I did have a question. I have been told to try all kinds of over the counter things and we know what happens there but what about all the natural herbs and diet things they have. I can not take anything herbal or green tea. Anyone else have that problem?

  • What herbal things are you talking about? There are thousands, so would like to know which ones you have tried and why you cannot take them.

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