I am a 52 year old male. Diagnosed myself around 1996, found a Dr. around 1998 that started me on Requip. 2 mgs.
I have SEVERE RLS! It affects my left side mostly, but can affect my entire body. I have seen 5 drs in the last 10 years or so.
Currently on Requip XL 8 MG, 1800+mgs Gabapentin, 10 MG hyrocodone. That doesn't take all the symptoms away many nights, and after all those meds,
I still suffer terribly. Punch my legs sometimes until they are black and blue. Want to jump off a bridge. Needless to say, because of this I am miserable most days. Suffer terrible stress, bouts of migraines, and terrible moods swings. I try to explain to some people what I am going thru but many cannot relate. Imagine being tortured every night I tell them, and when your so exhausted and want to sleep, you lay down but cannot stay put. Drinking more frequently to help take the misery away. Not good, but sometimes helps my mood and allows my to pass out..sometimes. I feel my sanity, my nerves and my soul has been slowly eaten away by this disease.
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I am sorry to read your posting and from what you say, it sounds like you are suffering from augmentation. This link may help you understand what augmentation is, if you are not already aware.
Thank you. Yes, that's what am experiencing, and my Dr. just added more Requip over time. I was taking the 8mgs daily, plus 2mgs as needed, but had very bad acid reflex flare ups and breathing problems. lowered it back to just 8mgs a day, but this has been going on for years! Added the gaba, and hydro, and still I suffer. Very depressing and I am also very scared as I see the next step is to eventually stop the requip, and other meds, and go in a different direction...my sister is pushing me to see other specialists at a renowned hospital nearby, and I will now...I regret having waited... Thanks again for your reply!
Unfortunately so many doctors appear to be unaware of augmentation so they just up the dosage and then the poor patient really suffers.
I am sure others will be along to help you out soon and give you good, sound advice as to what is the best way to go about this. This forum is great because fellow sufferers really do understand what it is like and know, from experience, what to suggest.
So few doctors and even neurologists know how to treat RLS.
Chin up, you have come to the right place and now know about augmentation. The next step, I believe, is to slowly cut down on the requip and stop taking it and this is done by taking other drugs to help you achieve this.
Do all Kaarina has advised in researching your condition .
Basically you are in a complete mess - first as K says - get off the Requip slowly. stay on the gaba and hydrocodone. Those last two on their own would normally be more than adequate to relieve rls. However - if you are adding triggers to the mix - such as alcohol - then you are really messing up.
It might be worth discussing with a knowledgeable doctor the substitution of 10 mg of oxycontin twice a day for the hydrocodone . that would help coming off the Requip. Clonidine and Diazepam should also be discussed. As should a short half life sleeping pill for the odd nights relief - Ambien is a good one.
Check out the "rlshelp.org "site and you could email Dr on that site.
Also worth checking out Matt Finch site for coping with withdrawal symptoms .
Good luck- you will need all of it.😎
Keep in touch with us- there is a lot of knowledge and experience here.
rlshelp.org that link will take you to the website without googling it. the doctor of that website is the best and as madlegs says you can email him and he will answer you in 24-48hrs.
Thanks. Yes, complete mess, that is an accurate description! Many family and friends would agree.
I agree. requip should be first, but the gaba is the worst of all three. Makes me crazy(ier),
and taken during the day at times, I will be fighting with my wife by dinner.. it does stupid bad things to me. I have tried edibles, cookies and candy, but cant say it was a great help. Some people say there are better types or strains that might be more suited, but i just don't know enough. Also, I live in a state where medical MJ is very limited, not something I want to enroll in.
Its helpful to read all of these encouraging sentiments.
The max effective dose of Gaba for rls is 900- best taken a few hrs before bed. But I would stick with lowering the Requip slowly as already suggested first . You really need to get referred to a sleep clinic/ neurologist who is competent in rls treatment.
Hopefully Nightdancer or Oolong or Earth???? will come on with better US appropriate advice.
Keep sane- you will come through this with the right help.
I totally agree with madlegs. The Gaba and the pain medication should be enough, but when added the high dose of the dopamine med you are on, then you are augmenting (worsening of symptoms) and until you deal with that the other meds do not stand a chance. Some doctors will wean you. Some experts will do a cold turkey thing, but with an added med to ease the withdrawal. however you do it, totally going cold turkey with no backup med is not recommended at all.
Dr. Christopher Early at John Hopkins Hospital is one of the leading specialists in the U.S.. it took me 5 months to get an appointment but his recommendations are right on the money. Also, have you had your iron and ferritin tested? Iron is a crucial factor in RLS.
I have also been seeing Dr. early for the last 15 months. He happy first withdrawal offer the Parkinson disease medicine and then tried gabapentin. The gabapentin just made me sleep and cry all day with malt suicidal thoughts. He now has me on a low-dose of methadone but because of my ADHD the methadone is like drinks 5 cups of coffee. Marijuana in edible form Seems to work the best. Out of spending over $2000 now at the legal dispensaries in Maryland I have found two kinds of marijuana that works the best. Moon dog and Gorrilia glue. Today I just spent another $500 at the dispensary and I picked up granddaddy purple and AC/DC which is listed as one of the top five marijuana is to treat restless leg. If this works I am going to buy seeds and start to grow my own medicine. Once grown I would turn into edibles which take up to an hour to kick in but they last all night long. If anybody else has any good advice my ears are definitely open because lack of sleep is very strenuous
I was desperate and finally found a Dr. on the RLS Foundation website who specializes in Rx, RL. I have been taking oral iron since May; went from 4 x/day to 3/day now . I am almost symptom free, my blood levels are checked monthly and ferritin is going up. The usual meds. Did not work for me for years going from one to another. For some of us Iron seems to be the problem and normal values aren’t sufficient. Hope you find relief. Flying Nun
Any chance of name of the hospital I would like to enquire about a consultancy for RLS if possible ,, nobody around this area appears to deal! With RLS in depth !
The RLS Foundation website list MD’s who treat RLS in your area. That is how I found Dr. Risk in Marlborough MA and found someone knowledgeable, compassionate and listened. Johns Hopkins and Mass. General also have RLS care centers. Flying Nun
If you read my very first Post of a few days ago entitled "My Life In Hell" you will know that I truly understand what you are saying and how you suffer. I am 80 and I have had it for many years and at one point in my ordeals with RLS I went 33 hours without any sleep whatsoever. I am on Mirapex and Sinemet. Mirapex was really good at first but then it haves lapses of not being effective. Sinemet works very well but its effectiveness lasts for only 90 minutes. But it can be very effective quickly. I have been able to get a fair night of rest by taking the Sinemet to get it quietened down and taking the Mirapex along with it for the longer effective time. But like I said both can become in-effective at times and all hell breaks loose. I have also been at my wits end and you can read in my Post. But at the moment I am doing not too badly. Yet I am well aware that can all disappear at any moment. I truly hope that some medicaton can work work for you very soon. All the best to you and if I can be of help in any other way please let me know.
Lonely7
Hi Ray, wow, is all i can say on your Requip dosage. No wonder you are suffering. What Kaarina has said to you is good info. I know its scarey the thought of getting off of the Requip but you will have to do it to feel better again. Weaning off of any dopamine med is not easy and i will not lie to you a high dose can feel worse. Its a process that needs to be done very slowly over couple of months depending on how the person gets on with it. You need to discuss this with your doctor of course, but you will need a strong pain med like Tramadol to help with the withdrawals from the dopamine. Most seem to just reduce by a 1/4 of a pill every weeks or more. The tramadol will help but you will still have bad nights. There are a few people on here who have either gone through all this and have come out the other side intact. and others on who are in the middle of weaning off their dopamine med. I missed you were taking a pain med already so maybe that will work better and not the tramadol, its trial and error. and as madlegs has just said please leave off the alcohol, its not the best thing for RLS, just makes it worse.
Thanks. What do you think the most likely withdrawal symptoms will be? I am a very high strung, intense person by nature
and of course I will be anxious as I attempt this. My dr had never put me on any diazepams or Klonopines, even when I was falling apart in my last two visits. I had two deaths, three months apart. My sister, and a close friend. Each just days before my three month checkups. I was an absolute mess both times. Sun glasses on in the office, crying etc. He put me on imipramine for my nerves (?) and migraines. That was horrible stuff, took it for a few months. The final decision was after I had two events where I was hallucinating. The walls were closing in on me.. Very scary. I never want to go thru that again.
I am getting a clear picture that I must see other specialists. My neuro Dr was a recommended RLS/Parkinson specialist when I started with him, but its time to move on.
It helps to just communicate this with others who know what I am/will be going thru.
I'm also in the U.S. and have an appointment on February 14 with Dr. Christopher Early at Hopkins (took 5 months to get an appointment). He is supposed to be a leading specialist for RLS. I can certainly post his recommendations after I see him.
I would be very interested with your experience at Johns Hopkins. Dr. Early is one of the experts in this area, I.e. RLS.
Flying Nun
Where abouts are you in the USA, maybe someone on here who lives near you, (we have some Americans who post and comment on here ) can recommend a GOOD doctor for you or at least some one better than the neuro you have been seeing.
Someone who has gone through this and the withdrawals, would be better to tell you their experience on what its was like for them. I have never thankfully had augmentation, but i do know how bad it is from reading so many posts on this forum and other sites, and that you have to get off that dopamine med and will feel better once you get through it. It cant be any worse than what you are going through right now, and from what you are telling us, it is extremely bad for you right now on that high dose. I see you are saying the Gaba is worse. I think you would be better to email the doctor on the website we gave you, tell him what you are taking and how you are including how the Gaba is making you feel. He is the expert and specialist for RLS and knows his stuff. he will give you some advice on your situation.
I live in New York, about 40 mins outside of NYC. I was referred to Mount Sinai Hospital. They have a movement disorder center. I plan to call this week for an appointment.
As they are all saying about various medications, more is not better, it is worse. I do not take any medications for RLS at all ( I use alternative remedies.) It looks like you need to be seriously weaned off of most of these drugs, so you can start over and see where you really are. Then go from there. The excess meds are complicating everything and making it worse. Other people on here are more experienced with meds and augmentation, so listen to them. I would bet the weaning process takes some time and is not at all pleasant to go thru. But necessary.......Good Luck!
Hi rays sorry you are suffering, I was on required 4mgs and I am comming of it. I am now down to 500micograms. I notice each time I reduce I have a really bad night like 2hrs sleep or less if it is really bad. I can't take gabapentin due to side effects same with tramadol. My regime is lyrica 25mgs in morning, codeine 15mgs in the afternoon then now 500 micrograms Ropinirole as required dosen't do low doses. 50mgs lyrica and 30mgs codeine, then codeine 30mgs after 4hrs if awake in night. I am waiting to see a sleep specialist in UK, how is very interested in RLS. Good luck it won't be easy I reduced 500 micrograms every 3 weeks, but some people on this for said 500 micrograms was to much at once
I have had some dark times to but there is light at the end of the tunnel.
Oh dear i sympathise with you .i am 59 had rls all my life well from being a wee girl but didnt kno what it was then .and feel for you as its like talking about yourself how it affects your whole life. and people who dont have it just say whats uo are you fidgety or something. They dont know how your whole life is controlled by rls as every day and night you wait for it at some point or other . How life would be if only !
What you wrote resonates with me. I have certain vivid memories of my childhood that fit the picture once I was diagnosed. In grade school there were times when having a class for 40 mins I could not sit still, my legs were jumping. Next my father like to take us on trips. They were great, but the long airplane flights were torture! If I had a nickel for every time I was told to sit still. Lastly, my mom was not in good health in her later years, diabetes and heart problems. She used to complain to me that her legs were killing her, she didn't know what to do with them. She wanted to 'cut them off' I can recall her saying as I would rub her feet and legs. No one Knew. It was always attributed to her diabetes, but once I understood about this affliction, I am certain my mother also had RLS. Thanks.
So Ray, sounds like you have Primary RLS, the inherited type. its what 70% of people with RLS have the rest have Secondary RLS. from a underlying condition. I have Primary RLS too, inherited from my father, also have a brother with RLS too.
I am the same, I know how you feel, and as you say people just think you are mad.I have also suffered migraine for 40 years. recently had 31 injections in my head, it has helped a little. but now I have this its driving me crazy. Made the mistake of drinking Tiamaria last night, 6h no sleep, it has Kept me awake all night. Cant type any more its driving me crazy. chris
From my last blood test 12/2016. Iron Serum: 81. Iron Saturation: 24%. Vitamin B12: 481. Ferritin, Serum: 55.
No flags on the report for any of these levels. I know my Ferritin was low a few years ago and my regular medical Dr put me on iron supplements. It went on up my next test.
From the Johns Hopkins RLS page "Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms." That said - you could try a course of iron supplementation with Albion Ferrous Bisglycinate Chelate. It supposedly crosses the blood/brain barrier more readily. Also an iron saturation of level below 20% is also a marker for supplementation with iron for RLS. You're pretty close at 23%. Also the probiotic LP299v has been shown to increase iron absorption. In any event you're a long way from iron problems like iron overload.
Looking at you Fe Numbers they are close to mine when I was at the worst. Worst - means 24 hrs RLS - day and night - even my arms - absolutely no sleep. Ferritin level was 49, Saturation 25%. Docs said you're good. Only that Johns Hopkins website saved me. With daily supplementation with Albion Ferrous Bisglycinate Chelate my Ferritin rose to 106 after about 8 weeks. I cut it down to zero, Ferritin dropped to 75 and RLS symptoms started coming back. Currently 2 days week Fe supplement, Probiotic daily - RLS symptom free...for now.
I also have found the iron bisglycinate to be the most helpful. I used to have RLS quite badly, but now it is very, very minimal - sometimes I feel it only a little and just turn into a different position while in bed, sometimes I do not feel it at all.
Thus, I do not have to stressfully wonder, before going to bed, if it will act up again. Now, I don't think about it so much and fear that it will 'get me, again."
So, give that iron a good try. The bisglycinate form is easy to absorb and non-constipating, as compared to other forms of iron. Take it at night. If you take it earlier in the day, it will not help at night when you need it most. That's what most of us who take it have found. Good luck!
Ray, count me as number 3 for the nightly intake of an iron supplement. I can't advocate enough for you to try iron in the form of one (or two) ferrous bisglycinate capsules (25mg) to be taken on an empty stomach before bed. For some reason I am required to warn you that you should check with your doctor before taking any iron supplement, even though you clearly do not have iron overload.
Plus there are certain substances that are known to make RLS worse than it has to be such as antihistamines, statins, antidepressants, melatonin, antacids, sugar substitutes, alcohol, metformin and HRT. Are you on any of these?
From Johns Hopkins website "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy on average improved RLS symptom after 3 months." You want to get your Ferritin level to 100 or so. Iron bisglycinate seems to work fine. But again - dig deep - if your Ferritin level is low - there is a reason and it's complex. The Iron might take away the symptoms and leave you with insomnia. Again, from JH "Johns Hopkins used MRI to image the brain and found glutamate — a neurotransmitter involved in arousal — in abnormally high levels in people with RLS. The more glutamate the researchers found in the brains of those with RLS, the worse their sleep.
Hi RayP. I Live in California (Mexico at the moment) and know what you are going through. Side effects from Gabapentin and Klonopin for me were osteoporosis which both contribute to. Doctors who prescribe these convulsives should be aware of this problem and also put you on a plant-based calcium/magnesium/vitamink2 supplement. I was so afraid of bones breaking I quit all meds and got so tired from no sleep I ended up in emergency with a heart arrhythmia. That is under control with minimum medication but had to stop all coffee, alchohol, overtraining (running), reduce sugar and meat and increase veggies and fruit. That helped the RLS so looking at life-style changes is worth the effort. Now I back on 300 mg gabapentin with occasional 1/4 mg klonopin at bedtime only. At a different time of day I take the calcium/mag/k2 so as not to interfere with gabapentin. When I can't sleep I get up and do something productive. Trying to learn all the nighttime constellations and stars to take my mind of RLS. I have several friends with RLS and medical marijuana works for them. In California it is easy to get now, but the docs at dispensaries are not the best. Check and you find many were suspended from their practice and this is how they get by. I am looking into a CBD only oil. The THC that gives the marijuana high is bred out of some plant or removed my other mehtods. One friend using this oil, putting a drop or two behind each ear, swears by it, so I hope to give it a try when I get back home in April. Incidentally, be carefull with the high dose of gabapentin along with hydrocodone. Just read an article yesterday when deaths from this combination are soaring in the USA. The article suggested tramadol if opioids are needed. Over time gabapentin stops working for some people. That happened to me. After I was off of it for 6 months, then started again at a lower dose. it worked again. Strange thing. When I had a glass of wine or two with dinner every night it produced RLS about an hour or two after falling asleep if I was able to. I had not had any for a long time but took 5 oz at a friends dinner party. Slept the best I had in a long time! But not going back to every night. Good luck.
Thank you to everyone for sharing your experiences and advice. I truly appreciate it and I'm glad I joined this community. A new feeling for me - support!
I am making plans this week to see other specialists. Early last year I found another Neurologist. I wanted a fresh look at my case. He said if I was his patient he would be treating me with the same meds and dosages. OK, Thanks Doc!...Then in November of 2016, had a consultation with a pain management Dr. I have back problems also - blew out a disc in my lower back years ago. We tried an epidural, hoping it would reduce some of my RLS symptoms. I put a lot of hope in this, but the only change was in my bank account.
I "liked" your last posting, for your first paragraph. I am glad that you feel supported now. Please call in as often as you wish and do let us know how you go on. Knowledge is power and although it will be a slow climb up the steep hill, you will get there. You know where we are.
mate i can relate to all your saying 100% at moment weening off pramipexole and its bloody awful please listen to advice all these good people on here can give you they.ve saved my insanity many times they know what there on about buddy hang on in there i,ve been in these dark places a few times but they,ve seen me through `
RaypJan 22From Retren I sympathize with you this condition is appalling I am putting in my 2cents worth about food and drink. So many things seem to make the condition worse or surface so look into the diet you have etc.I also suffer very badly from RLS and it is ongoing as the longer one has it the less easy it is to deal with it.I hope you can get some relief soon we all know how enervating this is .
Here's my latest update: Scheduled an appointment at MT Sinai Hospital in NYC. the Robert and John M. Bendheim Parkinson and Movement Disorders Center. Its not until 2/23.
Also, spoke with my regular Neurologist and told him I want to wean off of Requip XL, he said why. My response was I probably an experiencing augmentation, look at what I'm taking and I still suffer. He protested, then told me to start by cutting the 8 MG XL in half. I reminded him that this will break the time release barrier and after more protest he said he would call in a RX for 6MG XL. His general response was 'well we'll see if you had augmentation or not..?? What? Knowing how long he has had me on Requip + other meds and that's his response. What an a--hole. Clearly I need a new dr.
Started on the 6 MG Requip XL on Weds and I have had two bad nights. Last night, around 8-9PM, i was feeling like mud. Aches and pains, my legs were screaming. I was also very weak in the legs and at one point almost fainted. I fell to the ground but did not pass out. Very strange!! Today I woke up feeling like someone beat me up. Almost like low level flu symptoms. Does this sound about the norm for reducing Requip? In all my years I never reduced Requip, only increased it. Peace. RayP.
Hi Ray, 2mgs down is a big drop, we have some one else on here who is on even higher dose than you and its the XL, so they cant cut them in half either. But you need a back up med like Tramadol to help you. Decreasing any dopamine med will lead to withdrawals. and thats what you a feeling right now. Do you think your neuro would give you some tramadol. ?
I have 1mgs pills also, so I could take 6mgXL+1mg regular. How slow should I drop down in dosage. 1 mg a week, 2 mgs a months, etc. My dr did not give me clear instructions....
Well members who have done the same, usually take only half a 1mg for 2/3 weeks, then keep going like that, some only take 1/4 pill, because come find its too much to drop the dose at half. I cant really tell you what to do exactly. But i do know most have to take a strong pain med like i said previously to help with the withdrawals.
I am so sorry to hear how you are suffering with this disease. I have suffered also for many years too and I know what you are going through. The first thing I had to do was to get off the dopamine medications (Klonapin, Gabapantin, Requip) which have a tendency to cause mood and personality changes and create more anxiety and depression. But it has to be done under your doctor's care because you can't quit cold-turkey, it has to be slow. But be patient and get off of those medications or you will really want to kill yourself. Look at the paperwork that comes with your prescription and see the terrible side-effects you can have. Then start from there with a new product I have been using.
I take 10MG Hydrocodone, but for pain that I have from an accident. and I take it at bedtime with a product called INTRACAL which is Calcium Orotate with Magnesium Orotate and MSM. Now I can sleep 4-5 hours at a time and am so grateful for finding this product. You can find out about this formula which is called “INTRACAL” at globalhealingcenter.com or call (800) 476-0016. God bless you. I hope this works for you too.
I suffer with you and my bouts are horrible and I feel the same way, I have beat on myself too and thought about a bullet. But I have found some ways to help relieve some of it and there is hope for you too. First thing for me was to reduce the amount of Requip I was taking. I was up to 3mg. I found a supplement from the UK called Quiet Legs that helps wean you off the Requip. I also use an infrared light, take Magnesium and Iron. I've just recently had a bodyworker do a Cranial-Sacrum work on me and I got several restful nights afterward. Since that was done just 5 days ago and I have had only twinges of RLS, but no full blown flares. On severe days it starts in one leg, goes to the shoulder then down the other side and it can go on for hours. I hope this is helpful for you to know you are not alone in this suffering. Hang in there and try other options. I can't say that anyone is going to cure it, but it does help give relief albeit short at times, but the combinations are helpful.
If live in the Midwest the Mayo Clinic is a fantastic place to go also. They will start from the top of your head and test you all the way down to the bottom of your toes!
I'm working with the Marshfield Clinic right now but that's my next step.
Please hang in there. I felt as you do a week ago and while removing one med didn't help my rls yet it certainly improved my outlook on life drastically!
I also have severe restless leg syndrome. I started going to John- Hopkns restless leg clinic. If they’re all message failed they just gave me methadone to mask my symptoms but the methadone keeps me up at night and I cannot sleep. Marijuana seems to work the best but it has to be a pacific type. I’ve spent thousands of dollars on medical marijuana so for I have only found two types of work. One is called moon dog and the other is gorilla glue. Smoking it is instant relief but it only last for a couple of hours. If I can prepare the marijuana properly and turn it into an edible the perfect takes up to an hour to set in but it will last for all night long in my body. I’ve also learned I have to stay totally away from beer, wine, mix drinks and all caffeine products. I have been experimenting with marijuana for the last 15 months and I would consider myself 70% better than I was when I first started. If Parkinson disease medicine does not work for you or seizure medicine The only choice of doctor has for you is methadone which I am definitely against but I have no choice right now . Even though the methodology is only a very small mount with my ADHD the methadone is a stimulant for me which also makes it where I could not sleep. I’m hoping one day I am I can lock in on the right strain of marijuana and then start growing my own plants.
I have tried compression electric blankets and everything else possible except for a bar of Ivory soap under the blankets which is a wise tale. I am a very light sleeper because of this restless leg so I have also learned I’ve have to lemonade or other medical problems like allergies And unfortunately uncomfortable hemorrhoid.
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and others on who are in the middle of weaning off their dopamine med. I missed you were taking a pain med already so maybe that will work better and not the tramadol, its trial and error. and as madlegs has just said please leave off the alcohol, its not the best thing for RLS, just makes it worse. 
Severe RLS Augmentation on Pramipexole 
Taking iron for RLS; Requip better than Mirapex?
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