Patient letters on RLS symptoms and remedies- Page 85

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.

Sent: Wednesday, March 11, 2009 12:37 PM
Subject: Liquid iron?

My doctor has giving me iron tablets to try to raise my ferritin levels, I have a real problem in taking these, my stomach just cant tolerate them, I have tried several times and just give up. Apparently liquid iron is easy on the stomach and can raise ferritin levels.

So why don't doctors give liquid iron to patients who have trouble with the iron tablets. I know raising my ferritin levels which were 25 when tested may not help my RLS symptoms, but I need to try.

Irene P.

Medical Reply

Although iron tablets do have binders in them that might impede the absorption of iron, there is likely not as much a difference between these forms of oral iron. What is more important is the amount of elemental iron (the highest is a chewable tablet that is a compromise between liquids and solids and contains 150 mg of elemental iron). The other important aspect is taking the iron on an empty stomach and with Vitamin C (about 100 mg) to acidify the stomach.

As you increase your ferritin levels, the body will absorb less of your oral iron intake. That makes it difficult often to bring serum iron/ferritin levels high enough to relieve RLS symptoms.

A Reply from Irene P.

Sent: Thursday, March 12, 2009 4:39 AM
Subject: Iron and Ferritin Levels.

Thank you for your reply to my question on liquid iron. As RLSers, we are always advised to get our ferritin levels checked. that they should be at least 50. But if it is so difficult to reach a level high enough to make any difference, why then do we bother even trying. Is this something that has just come to light, that taking iron will not help with the RLS symptoms unless the ferritin level is really high.

I am sure there are many trying to take iron not knowing that it wont make any difference. I myself have now decided it sounds futile to try. Is it known how high a level has to be reached to make a difference.

Irene P.

Medical Reply

Unfortunately, you are fairly correct about your assumptions concerning raising iron levels and improving RLS. A small percentage of patients are able to improve ferritin levels to above 50 and also improve their RLS symptoms. The majority who try are typically not successful . However, we still try as it is a fairly safe treatment and may help some.

The real improvement will probably come with IV iron but we are still far away from making that therapy standard.

A Reply from Irene P.

Sent: Sunday, April 19, 2009 9:46 AM
Subject: Problems with treating RLS?

I have contacted you before regarding the problem I have in finding the right treatment for my RLS. I am very, very sensitive to prescription medication for my RLS. My last effort was to try tramadol, I initially took one 50mg tablet for two nights with no relief, so I increased the dose the next day, taking one mid-day, then one six hours later, I woke in the earlier hours and was extremely sick, so sick it frightened me.

I am thinking of trying Lortab, as this can be taken at a very low dose. I would like to know if this can make you have daytime drowsiness, as I cannot tolerate this side effect. Or do you think I should stay away from this type of drug. considering the effect of the tramadol had on me. I haven't tried any antidepressant drugs as yet, I know one has to be careful with these, because of worsening RLS.

I just don't know what else to try, because of my sensitivity to drugs. Am I just one of those people who are untreatable because of this. Just to add everything I have tried so far has given me daytime sleepiness. Can this be avoided in anyway.

Irene P.

Medical Reply

Despite your reaction to tramadol, it is not possible to predict your reaction to opioids like Lortab. It would be best to start with the lowest dose and only take a ½ tablet.

Sent: Wednesday, March 11, 2009 9:37 PM
Subject: RLS relief

I just recently discovered your site and I am really getting a lot out of it. I have had RLS since I was a child, although it wasn't diagnosed until I was in my 30's. My mother has it, my maternal grandmother had it, and bless her heart, my 16 year old daughter has it. I have been on various medications (Permax, clonidine, trazodone, Requip).

Most recently, I started on Mirapex and am waiting to see how it works. Of the various problems RLS causes for me, there are 2 or 3 that are pretty significant. My husband has moved to the other room and was to the point of suffering from depression from his sleep deprivation from my RLS. We are talking serious marital issues here - divorce was even discussed. I am also a nurse practitioner and have to take night call.

I am concerned that if I take a sleeping pill, I won't be able to wake for phone calls and function properly. I tried Lunesta and literally felt comatose. The sleep deprivation is taking it's toll on me and I also worry for my daughter. I am currently looking at obtaining treatment for my varicose veins which have been a problems since my early 20's to see if that helps.

I have been researching treatment options and I currently feel I know more than my internist, who is really quite brilliant. My daughter went to the premiere sleep doctor here in Tulsa, OK, and got really no help other than a diagnosis. She usually falls asleep at school and that creates problems too. I know this is a lot of information and you obviously receive a lot of emails. Any suggestions at this point?

Patti W.

Medical Reply

You do not say why the Requip did not relieve your problems. As such, Mirapex may or may not be your answer. It should (in most RLS sufferers) take care of your RLS symptoms and also stop most all of your PLMS which is bothering your husband and marriage. You would have to titrate the drug (if tolerated) until your RLS symptoms are gone and your leg kicks are reduced/eliminated sufficiently to make your husband happy.

Sedatives (like Klonopin and Lunesta) do not always reduce the legs kicks but rather prevent arousals from the PLM so that you can sleep through them. Although most people who take Lunesta wake up refreshed, some may find its half-life of 6 hours a little long and have daytime sleepiness complaints. If a sleeping pill is needed, Ambien with its 2.5 hour half-life may be a better choice for you.

If Mirapex does not work for you, then the next choices would be an anticonvulsant (such as gabapentin or Lyrica) which also helps PLMS or painkillers (opioids or tramadol) which does not help PLMS as well.

If the above treatments do not resolve your PLMS and marital problems sufficiently, then you may want to consider twin beds (separated by a quarter of an inch at bedtime) or a king size Tempur-Pedic mattress which dampens any leg kicks (you can jump on one side and not cause a glass of wine to fall over on the other side as seen in TV commercials) and give you enough room to kick without touching your husband.

Although there are a few articles claiming benefit of varicose veins for RLS it is quite unlikely that treatment of your veins will result in benefit of your RLS/PLMS difficulties.

Your 16 year old daughter should also get adequate treatment quite easily with a doctor versed in treating RLS. Although sleep specialists are usually quite good at RLS, it seems that the doctor (despite his reputation) may not be one of them. You may want to check with neurologists (especially movement disorder specialists) as they also tend to have expertise in treating RLS. However, do check to make sure that they do treat a lot of RLS cases before making an appointment.

A Reply from Patti W.

Sent: Thursday, March 12, 2009 5:21 AM
Subject: Re: RLS relief

As to the Requip, oddly enough, it gave me visual migraines 3-4 days in a row about 2 weeks into treatment. This was confirmed with a second trial of the drug with almost identical results. After stopping the Requip, the visual migraines resolved.

Just thought the further info might be helpful. I will look further into your other suggestions and hopefully this current trial of Mirapex will continue to go well.

Patti W.

Medical Reply

Hopefully, the Mirapex will not cause similar problems such as the visual migraines. That is a fairly unusual problem with dopamine agonists.

Sent: Thursday, March 12, 2009 3:34 PM
Subject: Medication for RLS

I am 81 years old and weigh about 110. I have had RLS since I was 18 years old. I have tried several drugs but have a hard time with them I have been on Mirapex for several years now and I have problems with falling asleep during my daily activities even while standing or sitting. I have fallen off chairs and fallen backward and sometimes forward. My sleep periods last only a few seconds. I cannot even do stretching exercises. I have been able to catch myself before too much damage is done.

This is dangerous for me since I have osteoporosis. I also have to do the driving because my husband no longer can. I was on Provigil for a while but it has lactose in and I am very sensitive to it. I now take caffeine and have been taking it for several months and it works but I know it is not good for RLS. I use it just before I have to drive. It works for me, I think probably because I have not use caffeine before.

I would like to try a smaller dose of Mirapex, maybe .5 mg and a very small dose of Neurontin together. Large doses of Neurontin hurt my muscles. I was thinking of maybe 150 mgs or so. Would there be any danger in taking the two together? Neither My sleep specialist nor my primary care doctor have suggested it.

I am very frustrated because I think I will soon have to quit caffeine. It also hurts my stomach. I hope you can help me.

Evelyn T.

Medical Reply

There is no problem with taking Mirapex and Neurontin together as we do that all the time. However, smaller doses of Neurontin are often not very helpful. Lyrica may be a better choice.

An alternative would be to discontinue Mirapex and change to a painkiller (tramadol or opioids). They will likely take care of your RLS symptoms and let you be more awake.

Sent: Friday, March 13, 2009 10:28 PM
Subject: advice needed

I was in contact by email with someone from the RLS Foundation who advised me to contact you (again) before my next doc appointment. I was diagnosed by a perceptive physician in October. He put me on ropinirole, working up from 0.25 to 1 mg. Each dose was effective for a few days before becoming ineffective. The 1 mg was effective for sleep at night for a while, but within a week I was getting augmentation which over time got worse, plus it became less effective at night. That's the point I was at when I emailed you the first time. I think actually I was freaking out...anyway. That was late December.

I saw my doc shortly thereafter and he suggested I up my dose to 1.5 mg, then 2.0 if needed - contrary to what you had advised but I didn't know how to say that so I said nothing, and did it. The augmentation over the next 2 weeks (at 1.5) became severe and debilitating - I had to stand up at work and by evening couldn't function. I cut back to 1.25 mg for the following two weeks, with no improvement. I began email consultations with my doctor. He wanted me to stop the ropinirole and start 0.125 pramipexole the same night, so I did, and the next 4 nights were basically sleepless.

I so badly didn't want to increase the pramipexole until the ropinirole withdrawal was finished, because I was so afraid of augmenting on pramipexole simply by taking more of it than I really needed. I lived thru those 4 days somehow but that was all I could take; I upped to 0.25 pram, and had the best sleep ever. But the next day I was a zombie all day; I lowered the dose again, I was still a slug plus I didn't sleep as well. I got zopiclone; I thought I could combine it with 0.125 pram. and get a good night's sleep and not be a zombie, but 0.125 pramipexole with or without zopiclone still makes me sleepy the next day. These experiments took 2 or 3 weeks. Upshot is pramipexole turns me into a zombie, I can't use it. So I emailed my doc again, and he said go back on the ropinirole until we could meet face to face.

I don't think I could bear the augmentation again, so I thought of not taking anything until my next appointment - but I also can't bear going back to the way I was, basically dying. I thought - not seriously, but wondering - of cutting my legs off, but figured I would get phantom-leg RLS and then I would have to kill myself because how could you live with that. So I decided to take ropinirole for 5 days, zombie drug for 1, and alternate like that. It's been almost 2 weeks and I have one more to go before I see him again. Nothing is predictable - now I am getting daytime sleepiness AND augmentation with the ropinirole (but it's bearable), and the zombie drug last night wasn't any more effective for sleep than ropinirole, even though it still turned me into a slug the next day.

My doc seems to be the most caring doctor I've ever seen, but he's just learning about RLS treatment, I suspect from something he said that I'm the third he's had, and from my own deductions I suspect I'm the only refractory one - I'm lucky he'd even heard of it, really - but my question for you is, how should I approach him? what should I ask him for? I am thinking from my reading that gabapentin would be the next thing to try... I am worried that I am reading way more about it than he has time to hear about.

I have read that there is higher incidence of peripheral neuropathy in Risers than in the general population. I have had weird stuff going on with my toes and fingers since the RLS got bad, nothing I would ask for help with normally, but might it be important in terms of the RLS? Should I ask my doc about them? (The weird things are: hands cramp and go weak when gripping hard, fingers and toes freeze easily, toes go numb but aren't frozen, toes get patchy bruise color on bottoms +/- waxy yellow on top in hot bath or sometimes when cold, and thumb got pain of multiple pins sticking in pad (happened only once, faded after 6-7 hours).

God this seems ridiculous. I hope I'm not wasting your time.) If I did ask my doc about them, what could he do, a nerve conduction study? But even if that showed a problem, is there anything that can be done about it? I get the impression there's not usually anything which can be done.... so why do the test.

I have one more question: I have read that compression of lumbar and sacral nerve roots has been associated with RLS. I have something going on with my lower back & butt & calf muscle which might be a nerve thing. Should I ask him about this? If I got this fixed somehow, might the RLS improve?

Is it all too much to bring up in one visit? I want to ask him what my serum ferritin level was too, and ask about iron supplements. Do you have any advice on what parts of this I should discuss with him, and also on what treatment I should be trying next?

Beth

Medical Reply

At this point, it would likely be best if you discussed stopping the dopamine agonists (Mirapex, Requip) with your doctor. Between augmentation and daytime sleepiness, they are really not drugs that are suited for you.

Neurontin (gabapentin) or Lyrica would be reasonable choices but the side effects (including sedation) may make these difficult to use as solo drugs for your RLS. However, if you are developing problems with peripheral neuropathy, these would be reasonable choices to help treat those symptoms in addition to your RLS.

My choice for you would be to change to a daily dose of a potent opioid such as methadone (my favorite choice as it works the best for most RLS sufferers) or oxycodone. If used correctly, these drugs are very safe and effective. The biggest problem is getting your doctor to prescribe them to you for regular daily use. What might be very helpful would be to get a copy of my book on RLS: Coping with your sleepless nights (profits from this book are donated to the RLS Foundation) as I have described the use of these drugs at great length and you can bring the book in to your doctor to use as a guide. Alternatively, you could bring him my book for doctors which is written at a higher medical level. Either book should be able to guide your doctor for proper therapy and assure him that this is appropriate therapy (although you may have to read the relevant sections and highlight them for him).

No special testing is usually necessary for peripheral neuropathy (especially when associated with RLS) as we just treat it symptomatically with medication such as Neurontin or Lyrica. There is no known association of compression of nerve roots anywhere and RLS.

Every RLS patient should have a ferritin level which if not above 50 should be treated with iron supplements.

A Reply from Beth

Sent: Thursday, March 26, 2009 3:43 AM
Subject: Re: advice needed

My doctor was happy to accept a copy of your book. He considered your advice which I relayed to him, cringed at the methadone/oxycodone suggestion, and agreed to try me on gabapentin. He also agreed to give me something for the ropinirole withdrawal this time (codeine).

The withdrawal wasn't bad compared to last time, probably because I was alternating pramipexole one night with ropinirole 5-6 nights, and because I kept on a low dose of both. So I used codeine for 3 nights, first night was entirely sleepless despite 90mg codeine, second night was a wonderful sleep with only a few short wake-ups on 60mg codeine, third night was in-between on 60 mg codeine. I would have liked to stay on the codeine, but the point was to use it for the withdrawal and then try the gabapentin.

So I started with 300 mg gabapentin for two nights, then 600 mg for two nights. That's where I am, on night 4. I don't seem to have any side effects but I'm not sleeping well. The first night I got about 6 hours, chopped up, the second night 4 chopped up hours, the third night not bad (3 broken hours, up for an hour, then 4 hours straight), tonight is the fourth night with no sleep so far and it's 4:18 AM. I know you recommend raising the dose by 300 every 3-7 days, but I'm not getting side effects so I'm doing every 2nd day, because I want it to start working so I can sleep.

So far, it seems to be doing nothing. The book says 1200-2000 mg daily for most people. I plan to raise it to 900 tomorrow and if I'm still not sleeping to 1200 1-2 days after. Is this a good plan? If 1200 doesn't work do I keep raising every 1-2 days: 1500, 1800, 2100? Is avoiding side effects the only reason to raise the dose slowly?

I'm relatively free of daytime symptoms now that I'm off the dopamine agonists, except when I lie down; that's much like I was before any drugs at all, but nights are worse. I used to wake without actually kicking quite often, just a gradual awakening from deep sleep into a state of full-alert wakefulness for no apparent reason.

 I've come to recognize that as kicking's little cousin and sometimes I would kick and have to get up and walk around or I'd stay in bed and contort and kick and sometimes that was good enough. But now I kick and kick and its not enough, even walking is not enough, I have to work the muscles hard to get the feelings to stop, and my arms are getting it fairly frequently, almost as much as the legs. And nights like tonight I go for hours without the symptoms letting up. I shouldn't be generalizing after only 4 nights on a drug... but I am . Anyway, am I to assume this is a natural progression of the disorder, and not caused by either the gabapentin, or the months on dopamine agonists?

Does anyone you know of use codeine regularly for RLS?

Beth

Medical Reply

Gabapentin should only be increased to a maximum of 1200 mg per dose (it can be taken up to 3 times daily when needed for 24/7 RLS symptoms). Most patients start having trouble with side effects above the 900 mg level (or earlier, so you have been lucky so far).

I have had some patients on codeine but typically, they do so much better on methadone or oxycodone. I do understand your doctor’s reluctance to use the very potent schedule II opioids as most doctors have very little experience using them. However, when used properly under supervision, they are extremely safe and effective and would likely resolve your RLS problems quickly (but good luck getting them).

A Reply from Beth

Sent: Sunday, May 03, 2009 11:13 PM
Subject: Re: advice needed

I have heard that Lyrica can help RLS. Can you tell me about this drug?  How would you recommend I make the switch between drugs? (i.e. taper off gabapentin over a period of how long, add Lyrica in when?)

Beth

Medical Reply

Lyrica is in the same class of anticonvulsant drugs as is gabapentin. The gabapentin is stopped and then Lyrica is started at 75 mg once or twice daily (if needed in the daytime also). The dose can be increased to 150 mg once or twice daily after a week if not

Sent: Saturday, March 14, 2009 6:47 AM
Subject: Re: coronary angiogram?

I am going to have a coronary angiogram. When I had one before they gave me Benadryl to relax me before the procedure. Needless to say, I suffered immensely afterward with the worse episode of RLS that I ever had. I told the nurse who was administering it to me, not to give it because it would make my RLS worse.

She didn't understand and kept right on injecting it. I intend to really stress the point to my cardiologist before the procedure. What could they give me in place of the Benadryl and do you have any other suggestions?.

Betty B.

Medical Reply

There are a lot of other medications that can be used to relax patients prior to outpatient procedures. Benzodiazepines (Valium like drugs) can be used and several other choices (or no sedative at all is also reasonable, especially if the result of their sedative is the opposite).

You should print out the free RLS medical alert card (download it from our homepage, just look at #17 of the index) that contains all the drugs that should not be given to RLS patients (and also lists alternatives) and give a copy to all your doctors including the nurse administering the sedative.

Let them know that if they do not abide by restrictions of drugs listed on the medical alert card, a malpractice suit may be the consequence (just as it would if they gave you a drug that they knew you were allergic to). This may sound like a tough approach but I have seen several doctors (especially anesthesiologists) ignore these instructions to the detriment of the RLS patient.

Sent: Monday, March 16, 2009 11:46 AM
Subject: RLS and Simvastatin

MAYDAY, SOS....I've got a problem with RLS and my NP at the VA Hospital suggested I go off Simvastatin on a trial basis. This was a couple weeks ago, and the problem persists with no relief whatsoever. I am also taking omeprazole and my RLS seems to have started slowly about the time I was put on it. Could there be a connection there?

Jim D.,
Norfolk

Medical Reply

Simvastatin (generic Zocor) has nothing to do with RLS. It may cause muscle aching but that is completely separate from RLS (the muscle aching does not go away with movement nor is it associated with an urge to move your legs). There is also no known relationship between omeprazole (generic Prilosec) and RLS.

Sent: Tuesday, March 17, 2009 11:12 PM
Subject: New treatment for my RLS?

I have had creepy crawly legs (I called it heebie-jeebies for years) for as long as I can remember. Back in to my pre-teens. I have had to endure the discomfort almost all my life. It was off and on for many many years. I finally asked a Dr. about it about 14 - 15 years ago at which time she put me on Klonopin 0.25 to 0.50 mg prn at bedtime. This worked fine for me for many years, I took one of those doses a couple of times a week. Usually after it affected my nights sleep the night before. I have gradually over the past 15 years had to increase my dose and my frequency to where I am taking 1 mg every night.

There are many nights that 1 mg does not work. I discovered quite by accident maybe 5-6 years ago after a bout of back pain where I was given Ultracet that that medication helps to decrease or diminish my symptoms. Problem is I can't convince my physician that it is something that I need to take regularly (nightly). She begrudgingly gives me 60 pills about ever 2 months or so. If I request anymore than that I get my RX denied, and a phone call from the nurse with a lecture about taking too many. (A lecture I do not appreciate as I am a Registered Nurse in the ER, with 30 years experience).

It had been my hope that with the onset of Menopause the first of this year that my symptom and/or their severity might decrease, only to find that they have become worse. I am on my feet 12 hours a day as an ER Nurse, and I think that this with age, and the number of years that I have had this condition it is only getting worse. I cry many a night due to the discomfort that has now come to include pain. I rub, pound on, apply Ben Gay type creams, wrap my legs as tightly as I can tolerate with ace wraps from my feet to my thighs. I have a precious few Hydrocodone that I save for the times when I have gone for many nights without sleep or with very poor sleep. (They don't always work, but the do more often than not). Some times these things help, some times they don't.

Sometimes I spend much of my night walking the floor to alleviate the discomfort. I have learned to sleep standing up, I stack up 3 pillows and bend over them on the bed to sleep standing next to the bed, Not the best nights sleep. I think it is beginning to affect my brain. I have trouble remembering things, find I am clumsy, have trouble speaking (my words come out wrong). My husband and I had a fight because I could not remember what floor our doctors office was on, his office is in the building connected to the hospital I work in.

I am considering going to a Neurologist, what advice can you give me on what to tell this doctor, what to asked for. I have tried Requip, it gave me some strange visual disturbances. I also saw a sleep specialist who gave me Gabapentin 300 mg. He had me up to taking 600 mg at 6 pm and 900 mg between 9 and 10 pm. I think it gave me some relief but I quit going to this doctor because he was more concerned with putting me on CPAP for "sleep apnea" than treating my RLS.

I tried to tell him that I have claustrophobia (BAD) can't stand anything on my face, full mask or nose piece. So it would not have behooved us to follow that path of treatment. I had a sleep study, I didn't know a person's legs could move that many times in an hour. I don't have the study in front of me, but it seemed like a lot.

What do you know about Lyrica for RLS?

What I would like to get for treatment is:
Klonopin 2 mg @ bedtime
Gabapentin titrated until effective and or Lyrica (do to the pain)
Tramadol 100 mg @bedtime
Hydrocodone 7.5/500 for prn use or alternating nights with the Tramadol
Ambien 10 mg at bedtime when needed (for those times when I am experiencing multiple night with disturbed sleep.

If I walked into a doctors office with this request do you think they would think I was a crazy "drug seeker?" I am 53 now, and am finding it harder and harder to tolerate nights without sleep and having to go to work. And I can't call in sick every time I have a sleepless night, I wouldn't keep my job for very long. I feel like I will eventually go crazy if I don't start getting some type of decent sleep.

Please feel free to give me you candid thoughts, suggestions, advice, criticism. I am desperate, I need to know what to do, Right now it is after one o'clock in the morning and here I am up cause my legs have the heebie-jeebies and I can't lie down more than 10 minutes without having to get up.

Thanks for your time and advice;

TJS

Medical Reply

Although you have already tried Requip without success, it would be wise to try Mirapex (even though it works somewhat similar to Requip, it can be quite different). If Mirapex does not help or is not tolerated then you should try other drugs.

Lyrica often works better for RLS than gabapentin but the only way to know for sure is to try it. Klonopin is not one of my favorite drugs as dependence/tolerance occurs frequently (as it already is happening to you) and its very long half-life of over 40 hours causes daytime drowsiness (often not apparent to the user. Ambien or Lunesta are much better choices for bedtime sleeping pills.

Tramadol is a reasonable choice. You can alternate it with an opioid but the Vicodin (hydrocodone) that you are taking contains acetaminophen (Tylenol) which does not help RLS so can only cause side effects. Oxycodone or methadone are much better choices. You will have trouble getting these medications from most general doctors as they do not know enough about the use of these drugs and RLS. Therefore, they will predictably chide you for wanting enough to treat your RLS and be concerned that you are seeking drugs. It might be helpful to see a doctor who specializes in RLS (such as some movement disorder neurologists and sleep specialists) but you have to make sure that they see enough RLS cases and know about the use of opioids to treat RLS.

Additionally, you to get a copy of my new book on RLS: Coping with your sleepless nights. (profits go to the RLS Foundation) as it discusses how and why opioids are used and can be used as a reference to validate their use (you could also get a copy of my RLS book for doctors which would be less useful for you but more concise for your doctor).

Sent: Monday, November 17, 2008 12:27 PM
Subject: MIRAPEX TO REQUIP

I am currently taking five doses of 0.125 Mirapex starting at noon and ending at bedtime. Because I have used Mirapex for more than a decade I feel I am having rebound. It isn't working nearly as well as it used to. It is in my arms also and generally pretty bad most of the day.

What do you think the best way is to switch to Requip for at least while? I don't think their starter kit sounds like enough for me. How would I get along only taking it 3 hours before bedtime?

Marge in Colorado

Medical Reply

It sounds like you are getting augmentation rather than rebound from the Mirapex. You could change to Requip but there is a reasonable likelihood that it too may cause augmentation at an effective dose (roughly Requip .25 mg to .5 mg equals Mirapex at .125 mg).

However, before starting Requip, it would be wise to take a drug holiday from dopamine drugs for about 2 weeks. The RLS will get quite severe in this withdrawal period typically requiring a strong opioid (Vicodin, oxycodone) to help you get through it. After the two week period, you could try taking the Requip just 3 hours before bedtime and see if that works (there is little chance of one dose of Requip helping if you do not take a 2 week drug holiday).

A Reply from Marge

Sent: Monday, November 17, 2008 12:27 PM
Subject: MIRAPEX TO REQUIP

I am currently taking five doses of 0.125 Mirapex starting at noon and ending at bedtime. Because I have used Mirapex for more than a decade I feel I am having rebound. It isn't working nearly as well as it used to. It is in my arms also and generally pretty bad most of the day. What do you think the best way is to switch to Requip for at least while? I don't think their starter kit sounds like enough for me. How would I get along only taking it 3 hours before bedtime?

Marge in Colorado

Medical Reply

It sounds like you are getting augmentation rather than rebound from the Mirapex. You could change to Requip but there is a reasonable likelihood that it too may cause augmentation at an effective dose (roughly Requip .25 mg to .5 mg equals Mirapex at .125 mg).

However, before starting Requip, it would be wise to take a drug holiday from dopamine drugs for about 2 weeks. The RLS will get quite severe in this withdrawal period typically requiring a strong opioid (Vicodin, oxycodone) to help you get through it. After the two week period, you could try taking the Requip just 3 hours before bedtime and see if that works (there is little chance of one dose of Requip helping if you do not take a 2 week drug holiday).

Sent: Friday, March 20, 2009 10:41 AM
Subject: RE: Augmentation Help for Someone Who Has History of Alcohol Abuse

Thank you very much for your response. I wanted to give you an update of my husband's progress. He has been treated for anemia for over a year. He has been taking iron supplement, tablets and liquid, but they did nothing to his low ferritin level. We insisted that he has IV iron and finally his primary care agreed to refer him to a Hematologist. He has had 7 infusions in the past 4 weeks and depending on the tests they will do next week he may need to have more. I can not begin to tell how much better his RLS is already. We were both at the end of our wits with his all night, agonizing, non stop cramps and now he still gets them but nothing like that.

Meanwhile he had his appointment at the Sleep Clinic at the Mayo Clinic in Jacksonville. We knew that he was augmenting from Requip. Much to our surprise the head of the sleep clinic Dr Lin said that the dose of Requip he is on (it was 1.5 mg at that time) is actually low and people with RLS could go up to 12 mg. We were shocked, as we never heard of it before but who are we to argue with the head of the Sleep Clinic.

Thankfully the iron infusions started to work at the same time so that my husband did not have to increase the dosage. Neither he nor I felt comfortable about this. He was also put on Seroquel for his bipolar (25mg) and that helps him to sleep. He also takes 2 mg of Requip. He will go back to the Mayo Clinic for a follow up appointment for both RLS and bipolar/alcoholism disorders on Monday.

I just wanted to thank you again for taking the time to respond to my e-mail and also wanted to add our positive experience with iron infusions. I am not saying that this is the cure, but maybe there is more that needs to be explored and people like yourselves are our hope in treatment and cure of this horrendous disease.

Asli M.

Medical Reply

There is lots of research going on now about iron therapy and RLS. Unfortunately, now we can only give this therapy to patients who have anemia with their RLS.

It is good to hear that your husband’s RLS is getting better.

Sent: Friday, March 20, 2009 9:38 PM
Subject: RLS and body chills?

I am a 47 year old female. My RLS is worsening and now is associated with unbearable body chills. I get in baths hot enough to cook something, but even that does not make me feel warm inside. When my body does warm, the RLS seems to lessen as well. Does anyone else have this? My doctor has me on three (.5 mg) Requip.

My symptoms are getting worse. Can anyone help me?

Medical Reply

Your problem with feeling cold associated with RLS is very unusual. We will post your letter to see if any others have notices any such similar relationship.

However, if Requip is not helping you, it may be necessary to change to a higher dose or a different medication. RLS can most often be controlled nicely when treated properly.

A Reply from RLS and body chills?

Sent: Thursday, March 26, 2009 10:56 PM
Subject: Re: RLS and body chills?

My legs feel cold inside pretty much all the time, and I wish I had heat tape to wrap them in. I do the scalding hot bath thing - the heat stills the RLS (only if it hasn't really got going yet). I wear wool socks to bed but they don't do much good - they don't generate heat. I put a hot water bottle in my bed where my feet go.

Sometimes sitting at my desk I wrap each leg in a heat blanket, but that doesn't feel as good as a bath - for some reason, the heat doesn't penetrate to the bone, and only the surface of the leg feels heated, while the inside still feels cold. And the cold is related to the RLS somehow; when the legs get heated inside, any incipient RLS symptoms are quieted.

Medical Reply

It is quite common for RLS sufferers to get relief with hot water (although, there are some who prefer cold water). The reason for this is not clear but it is likely that the extreme of temperatures causes a counter-stimulus that competes with the unpleasant RLS symptoms and thus reduces or eliminates them. There are some devices being developed that may perform this function for RLS patients.

Sent: Tuesday, March 24, 2009 9:40 AM
Subject: PLMD

I have suffered with RLS all my life. Its always the worst when I am over tired. I just started 4 months ago when lie on my sides at night my left leg kicks and twitches out of control. If I sleep on my stomach I can fall asleep.

The one thing I found NOT to take is Tylenol PM. OMG, it gave me the worst RLS of my life. I forgot and tried it again and suffered all night.

Medical Reply

Tylenol PM contains diphenhydramine (Benadryl) which is well known to worsen RLS symptoms. You should download a free copy of our RLS medical alert card (from the index on our homepage) as it contains a list of drugs to avoid and alternate drugs to use that do not worsen RLS.

Sent: Tuesday, March 24, 2009 12:58 PM
Subject: Not sure what to do.

I have been taking 2 mg Requip for about 2 years. I also take .5 mg Klonopin and 10mg hydrocodone only in the evening. I have break thru early a.m. and often around 4 o'clock in the afternoon. Is it safe to ask my MD. to also prescribe Lyrica? I also have to take 10 mg Ambien for sleep.

What would you recommend? I often wake with a headache and muscle pain and tension in my jaw area.

Medical Reply

Klonopin is not one of my favorite drugs due to its very long half-life of over 40 hours and it may cause dependence/tolerance. Additionally, since it works on the same receptors as Ambien, you are actually getting double the effect on the benzodiazepine sleep receptors that both drugs act upon (these drugs are therefore typically not used together).

You may be experiencing augmentation from the Requip (earlier onset of the RLS symptoms due to taking a dopamine drug) and discontinuing the drug or taking an earlier dose are options. You could also change to Mirapex to see if that helps.

Lyrica is always a good choice to treat RLS and the only way to find if it is the correct drug for you is to try it.

Sent: Tuesday, March 24, 2009 9:05 PM
Subject: RLS, Mirapex , blurred vision, tinnitus

My husband has taken Mirapex for several years with good relief of RLS, though he does have sudden onset sleepiness and irritability. He is committed to continuing with Mirapex because it does give him good relief , though he has to start taking it at 4pm and takes about 1mg total per day. Shortly after beginning on Mirapex he developed blurry vision and tinnitus.

He went to the eye doctor who scheduled him for corrective eye surgery (muscle shortening) . Being an RN, I am concerned that the vision and tinnitus issues could be related to Mirapex. I feel that he should come off the Mirapex for a month or two before having corrective eye surgery even thought the eye surgeon is quite sure Mirapex not to blame (and he's just developed wandering eye at age 48).

He's tried tapering Mirapex for a few days and it makes no difference in vision. I feel he needs to go off from it for a much longer time to see if it might be to blame. He has seen neurologist, had MIR, ruled out MS etc., but he hasn't come off the Mirapex.

Mary

Medical Reply

Visual and tinnitus problems are not very common due to Mirapex. However, some problems do occur rarely but wandering eye has not yet been reported (to the best of my knowledge). Typically, about 3-5 days off the medication should result in resolution of the problem (if it is due to the drug), but of course, this can vary from patient to patient. Certainly, the longer he is off the medication, the more certain you can be about the effect of the medication.

A Reply from Mary

Sent: Wednesday, March 25, 2009 6:38 AM
Subject: RE: RLS, Mirapex , blurred vision, tinnitus

Thank you for this info- he's been struggling with the vision thing for 2 years and I've been opposed to surgery. When I read that muscle weakness can be caused by Mirapex, and sudden onset amblyopia in middle age is uncommon, I thought Mirapex could be he culprit. He is one of those people who seems to be super sensitive to medication. I am going to encourage a few weeks off Mirapex( this will be tough) to check vision. We know not to stop suddenly- will get neurologists advice.

A second question- he is eating compulsively and has recognized this in himself- has put on 20 pounds in past few years. Do you see this? He can't seem to stop compulsive eating though he wants to. Never a person who has had a weight problem.

Mary

Medical Reply

Mirapex has been associated with compulsive behaviors (such as gambling, sexual and other disorders) so it is certainly possible that Mirapex may be the culprit causing his compulsive eating. However, compulsive eating is common enough that it may not be due to Mirapex. This of course, can be easily proven by stopping the Mirapex.

Sent: Thursday, March 26, 2009 2:42 PM
Subject: Rates of opioid tolerance with chronic treatment?

Firstly I would like to sincerely thank you for your work both online and off. This website has been a wonderful resource, and I cannot say how much I appreciate the research you and your colleagues have done, not to mention your contributions to greater public awareness of the disorder. I'm sure I speak for many people!

I am writing because for the past fourteen years I have dealt with severely debilitating recurrent major depression, and my psychiatrist -- a man I have known almost equally as long -- has decided that I should try an opioid. While that may sound extreme, please bear in mind that I have almost literally tried every therapy imaginable, including ECT (electroconvulsive therapy) and hospitalization. As I have since discovered, there are also some studies that support such a usage of the medication, not to mention his own clinical experience in select patients (although he says it is an option he employs relatively rarely). I have no history of substance abuse; I do not smoke or drink alcohol or even caffeine.

Despite some serious reservations about going onto hydrocodone, I ultimately decided to follow my doctor's suggestion and begin the medication at a very low dose. I take about one third of a 5 mg pill. Not surprisingly perhaps, I have seen little benefit in the way of my mood at this dose; on the other hand, my otherwise maddening nightly RLS symptoms are much improved.

My co-morbid difficulties with RLS seem to present something of a conundrum (at least to my mind): having experienced augmentation after a couple of years of ropinirole and pramipexole use, not to mention horrible nausea, I no longer feel like the dopamine agonists are a realistic option. I am concerned that my attempts to titrate up to a (potentially) psychologically therapeutic level on an opioid will unnecessarily hasten my RLS tolerance to the effects of this remarkably helpful medication for my legs.

For that reason I have been at this dose (1/3 of a 5 mg pill) for two months, but I am also concerned I am neglecting a treatment which could -- at the right dose or with the right opioid -- finally make a difference psychologically. I don't necessarily hold out a lot of hope for it, but I know it is a possibility. I have also been on gabapentin (300 mg, three times per day), which seems to alleviate the RLS very well when combined with the hydrocodone.

In your experience, how long do patients typically manage to use opioids for RLS before either an increase in dose or potency is required? I own your book for clinicians and realize rotational regiments and/or drug holidays are recommended; unfortunately, if I titrate up to the 5-10 mg a day my doctor is recommending (psychiatrically) and go on holidays, I believe withdrawal headaches could become a real possibility, as I am prone to migraines.

I have not tried tramadol, nor am I sure my psychiatrist would prescribe it, but if one assumes I begin taking an opioid like hydrocodone at 5-10 mg/day, do you think I will run a serious risk of exhausting the benefits of this medication for RLS? I really don't know what I would do if my legs became untreatable; it can often be as horrible as the depression itself, only for fewer hours of the day. I am 32 years old and the RLS symptoms seem to have steadily worsened.

Brian

Medical Reply

You have a lot of leeway when using opioids for treating RLS (I cannot comment on the psychiatric use as that is beyond my expertise). Typically, doses up to 30 mg of hydrocodone per day rarely (especially if there is no history of drug abuse) result in problems with dependence or tolerance. Most of my patients have been on stable, steady doses of even high potency opioids (hydrocodone is a medium potency opioid) for over 10-15 years without a need to increase the dose unless something causes their RLS to worsen (such as starting a drug that worsens RLS).

I do have a problem with the daily use of hydrocodone as it always comes combined with acetaminophen or ibuprofen. As those drugs do not help RLS (or psychiatric problems), you are getting exposure to a drug that cannot help but may do harm. It is better to use lower doses of the more potent opioids that come as pure (not combined with any other drug) medications.


It may be helpful to get a copy of my book on RLS (Coping with your sleepless nights) . This book goes into even more detail about using opioids and other drugs. Profits from this book are donated to the RLS Foundation.

Sent: Friday, March 27, 2009 5:56 AM
Subject: Weaning off Mirapex? 

My husband has been on Mirapex for about 18 months, I would like him to stop taking it.  He has Alzheimer's, and they tried at one time to stop it when they first put him on the Aricept and Namenda, I could not wake him up one night, he was in a cold sweat, and I had to call an ambulance. 

They put him back on it, but he is starting to play with his privates, and I think he should be taken off the Mirapex, is there a safe way to do that.  I know enough not to cold-turkey him off of it.  Is playing with one's privates a side effect of taking this drug?  Thank you for any information you can give me.

Charlene J.

Medical Reply

Compulsive behavior has been associated with Mirapex but more so with problems like compulsive gambling, shopping, etc. However, compulsive sexual behavior has also been documented so it is possible that your husband's behavior is somewhat related to the Mirapex. The only way to know for sure is to stop the Mirapex and to see if the behavior continues (did he have the problem with playing with his privates when he was off Mirapex?). 

There actually is no problem with stopping Mirapex cold turkey except that the RLS symptoms will quickly return and be more intense for a few days.

A Reply from Charlene

Sent: Friday, March 27, 2009 5:47 PM
Subject: Re: weaning off Mirapex

Thank you for your quick reply. My husband did not play with his privates while off of the Mirapex, this is something that has happened since he went on it, and it continues to worsen. This may not be caused by the Mirapex, but I have requested the doctor take him off of it just to see if it does improve.

It is good to know the RLS symptoms will return quickly and be intense for a few days. That is what happened when they took him off of it for those three days, his legs would not stop while sleeping. The RLS only happens when he is sleeping, and he does not even know it is happening, he has never had any trouble with RLS when he is awake.

Charlene J.

Medical Reply

Your husband does not have RLS but rather PLMS (Periodic Limb Movements in Sleep). RLS consists of unpleasant sensations associated with an urge to move the legs so you must be awake to have RLS. PLMS is completely different than RLS although 85% of RLS patients have some degree of PLMS it is also very common in those without RLS (like your husband). PLMS occurs very commonly in patients on certain medications such antidepressants.

Although the PLMS may be very disturbing to the bed partner, it is still not clear whether treating them is necessary or even helpful. There are many sleep experts who believe that the PLMS are simply a marker of some other issue and do not result in other sleep problems and thus do not need to be treated. However, other sleep specialists do believe they should be treated when the result in increased daytime sleepiness/fatigue (but of course, the patient must be able to communicate these issues sufficiently to decide whether the PLMS are affecting his daytime function).

A Reply from Charlene

Sent: Friday, March 27, 2009 9:02 PM
Subject: Re: weaning off Mirapex

Thank you for your response. I have heard of PLMS, and have wondered at times if this might be what my husband has instead of the RLS because he never experiences any type of problems with the movement of his legs when he is awake. Like I said in my previous message, I have ask his doctor to take him off of the Mirapex. He has cut his dosage down to a half of pill each night instead of a whole pill for one week, then he said to take him off of it all together.

I hope I have done the right thing in asking he be taken off the drug. I wonder if I might trouble you with one more question? Is the movement these patients experience with PLMS also in the hands, my husband also experiences movements in his hands while sleeping as if he is grabbing something, could this be associated with the PLMS?

My husband was not on any medication when this ailment started except for an eye drop because of increased pressure in his eye. He started the Aricept and Namenda after they put him on the Mirapex.

Charlene J.

Medical Reply

PLMS can also occur in the arms but the movements are typically more jerky.

Sent: Friday, March 27, 2009 2:04 PM
Subject: Medications that cause RLS

I started getting RLS in my early teens and suffered for many years before finding a medication to avoid them. I have been able to control mine, most of the time by taking Mirapex every day. However, I have found out the hard way that certain medications can cause RLS and I would like to know if there is a list available of medications to avoid if at all possible.

I have had RLS after taking an antihistamine or anti-nausea medication. They had been prescribed at different times for different reasons.

Claire B.

Medical Reply

There is a list on our RLS Treatment Page and you can also download a free copy of our RLS medical alert card (from the index on our homepage, item #17) and print out several copies (one for each of your doctors). It contains all the medications to avoid (including antihistamines and anti-nausea medications an alternatives that do not worsen RLS.

Sent: Saturday, March 28, 2009 12:21 PM
Subject: RLS medication change

I'm a 54 year old woman with MS and RLS. I thought what I had was an extreme case of RLS, but after corresponding with some folks on the RLS discussion forum, I concluded that what I have is fairly extreme augmentation. I've been taking Mirapex for probably close to 10 years, and have required increasing doses.

Most recently, my regimen has been 0.5 mg alternating with 0.75 mg q 4 hr. This has not been working well for the past 4 or 5 months, and my neurologist tried to switch me to Requip, which was even less effective. I asked him to switch me to Neurontin, but we are not sure how best to make the switch.

Do I need to taper off the Mirapex, do I need to be completely off of it prior to starting the Neurontin, can I taper the Mirapex and ramp up the Neurontin at the same time?

Pending any definitive advice, I decided to try to taper the Mirapex over a few days prior to starting the new drug. Yesterday I took 3 (0.5 mg) doses. of Mirapex. This morning at about 4 am I took a temazepam so that I could go to sleep. I think it's going to be a LONGGG weekend!

Nancy L.,
Arkansas

Medical Reply

It does sound like you are experiencing augmentation from the Mirapex but without knowing more of your medical story it could also be that you are simply having worsening RLS that requires more medication. However, you are already well beyond the level of Mirapex that works for 98% of other RLS sufferers.

Neurontin takes quite a while to get to a high enough level to relieve RLS symptoms and typically is not used in cases of augmentation when stopping the Mirapex quickly (which then results in a marked increase of RLS symptoms for a week or two). We typically give potent opioids (oxycodone or methadone) for the time of worsening RLS. Neurontin or Lyrica can be added in slowly after a week or two.

Sent: Tuesday, March 31, 2009 2:09 AM
Subject: My life is often a nightmare...

I have had what I think may be RLS for around 18 years. Unlike most sufferers I have it all the time and not just the evenings.
Although the evenings are worse, anytime that I may be sat or sometimes even stood still I get the urges to move and stretch. I also have the same sensations in my lower back and arms, feet and hands and fingers. I have spoken to doctors, had tests and physiotherapy and no one has been able to diagnose me.

I scoured the internet trying to find what may be wrong and then found the RLS website. Most of the symptoms sounded like mine and I thought I would ask my GP about it and whether it can effect other muscles. I also spoke to a specialist in London via email and he confirmed that although rare, it could be possible and that I should ask for my GP to look into it.

When I spoke to my GP, he was angry that I had asked someone else and told me I could not discuss this with him, almost like a child playing favorites. I tried to explain I was just looking for hope but he refused to discuss it and said I was to make another appointment and when I tried it was weeks away before I could get in again as it was a planned appointment.

I am now at a loss, unable to find a diagnosis or treatment and continuously suffering with not only the eternal need to move but also cramps and pulled muscles, sleepless nights extra weight from lack of mobility due to the constant muscles pulling.

Can anyone advise me on how I am to be taken seriously or indeed if anyone has had symptoms similar to mine?
I would be most grateful for any response just so I know I am not alone!!!

Stacey
Cliftonville, Northampton, England

Medical Reply

It does sound as if you have RLS. The symptoms of RLS can occur anywhere in the body (although it always starts in the legs then progresses typically to the arms then to other body parts). It was thought until recently that it could not occur above the neck (in the face, scalp, etc.) but a recent journal article described patients with symptoms in those areas. However, the symptoms in the other body parts should improve or be relieved by movements such as walking.

Treatment with pramipexole or ropinirole should relieve your symptoms and would be a good test to prove that you do have RLS. If not, opioids (with or without drugs like gabapentin) should take care of your problems. If your GP is not being helpful, you might consider changing doctors.

Sent: Wednesday, April 01, 2009 6:08 PM
Subject: Pneumatic compression devices for RLS?

I read recently about a study that was published in the January, 2009 issue of the journal Chest, reporting positive results in a controlled study of the use of pneumatic compression devices (PCD) for treating RLS symptoms. 21 subjects received 1 hour of periodic compression to the legs, and 14 received a sham compression (same device, but subtherapeutic pressure).

1/3 of the 21 subjects reported complete relief of symptoms, and all reported a significant average reduction of symptoms and improvement in quality of life, sleep, etc.  Here is a link to the report: http://www.chestjournal.org/content/135/1/74.long

Do you have any opinion about such a treatment? Do you believe it to be effective? The device is pricey (around $2000, I believe), and apparently one must use it for an hour a day. However, I'm interested, because with my usual regimen of Mirapex (3 years running now) I'm developing tolerance and augmentation, and the side effects can be hard to take, even though it's reasonably effective.

Peter

Medical Reply

This study was quite interesting and does hold some promise for a leg compression device that may help RLS. However, we really need more information before anyone (expert or otherwise) should recommend any RLS patient to go out and buy one. There is some contradictory evidence on this device as the second (after a very weak preliminary study) done by Rajaram SS, Rudzinskiy P and Walters AS did not find this device to be helpful (although they did run into some technical difficulties with the study).

I would definitely recommend waiting for follow up studies with greater number of patients before going out and buying this very expensive compression device.

Sent: Friday, April 03, 2009 5:10 AM
Subject: RLS at wits end

I am reading the replies form fellow RLS sufferers, and if nothing else, I am encouraged that there are others out there that are suffering as badly as I and there may be help, since I am feeling like I am at the end of my rope . I live in upstate New York , outside of Rochester and I have severe RLS and jokingly tell people I am the poster child for RLS symptoms.

I was put on Mirapex about 2 years ago, and it worked great for about a month , until I started to Augment. the sensations went into my arms and increasing the dose did nothing to alleviate this , so my doctor, had me stop the drugs. For about 6 months I took nothing for the symptoms and suffered thru the night, and day. then I saw Requip advertised on TV. I asked my doctor about it and he indicated it was from the same family as the Mirapex, but if I wanted to try it ,go ahead , so I did.

For the first 2 to 3 months, starting out at .5 mg, it was a miracle, similar to the Mirapex, had more energy than I had for years, but then the dosages had to be increased, and the augmentation came on. Today, I just don't know which way to turn, since I have gotten to the point where the drugs , seem to work slightly while I am awake. but as soon as I lay down to go to sleep, the twitching returns, and I am unable to sleep till the early morning hours. I was living with the augmentation during the day time hours, for quite awhile, since until the last month or so , the ropinirole did allow me to get some quality sleep at night, but now its a nightmare.

Here is my present schedule, I take 2 mg at 5:30 pm,, to relieve evening symptoms, and this generally works up till 9 to 10 pm. I take a second 2 mg , at 9:15 to " boost " the earlier dose to get me thru the night. except it doesn't work anymore. As many of the emailers have indicated , the doctors available to me in my upstate New York area, don't seem to be as educated or up to date on different treatment options, as they could be , so I am searching for an approach I can suggest to my doctor to alleviate my symptoms.

Can you indicate which direction I could proceed in , i.e. opiates, sleeping pills . etc. I am going to cut my Requip back in half this weekend to see if symptoms get a bit better, and if not stop altogether, then maybe restart on lower dose in week or so. Will the Requip completely clear my system in a week or 2 so my body can start over so to speak.

John E.

Medical Reply

It does sound as if you have augmentation from the dopamine drugs, Mirapex and Requip. The best thing to do would be to go off the Requip but that would require opioids to treat the week or so of marked worsening (it may be hard to get your doctor to prescribe oxycodone or methadone). However, that treatment would work very well and then you could transfer to either low dose opioids or anticonvulsants (gabapentin or Lyrica) or a combination of both.  

A Reply from John E.

Sent: Friday, April 03, 2009 11:16 AM
Subject: RE: RLS at wits end

In the beginning the Requip was a miracle , working very well in order to let me sleep and give me energy back where I had none. If I go cold turkey from the Requip, then get thru the 2 week period , will my body have "forgotten" about its augmentation and allow me to restart the Requip, albeit I would eventually end up where I am now again down the road. The reason I ask is the Requip worked well for quite a few months till I got to this point.  

Assuming I can get my doctor to prescribe the opioids, at what level would you recommend I start for the 2 week withdrawal (dose and frequency and then what level of low dose would you expect me to get to). I know everyone is different, but my doctor is a great general practitioner, but I do not believe he is up to date on all the current RLS alternatives or dosages, so any starting suggestions would help when I see him.

John E.

Medical Reply

Typically, after the 2 week off period, your RLS should be reset back to previous levels. However, if you restart Requip at the same dose you will likely develop augmentation sooner (more likely) or later. What we sometimes do is restart the offending dopamine agonist at a lower dose and combine it with another class of drug.

You are quite correct about how individual the doses are for treating RLS symptoms in general and especially for withdrawal in situations such as yours. I generally recommend methadone or oxycodone starting at doses of 5 mg (for patients older than 65 years, I often try 1/2 tablet) up to three times daily as needed. The dose can be increased to 7.5 or 10 mg three times daily if needed.

 After 1-2 weeks, the dose can be reduced to the lowest dose that relieves symptoms. Only trial and error can determine this dose. I often add other medications such as Lyrica to see if I can further reduce the opioid dose.

A Reply from John E.

Sent: Monday, April 06, 2009 7:19 AM
Subject: RE: RLS at wits end

I actually drove to my doctors house this weekend , to tell him how severe my symptoms have become, show him your  correspondence and see if he would prescribe the opiates during the withdrawal period I would go through to see if I could get back to my baseline. In all honesty, I had a near breakdown while talking to him, and am planning to see him today after work, to discuss options further. Over the weekend he had me continue the Requip, cutting the dose in half to 2 mg instead of the 4 mg , I was taking , and adding Xanax 1 mg to my bedtime treatment to see if I could sleep.

Finally at 2am in morning this worked, and I slept thru till 9 am the following am, but felt like I was half doped up the following day. Sunday night I took the same 2 mg of Requip ,before going to bed, and cut back to .5 mg of Xanax and this got me to sleep thru till around 7:30 am, but I did not feel all that rested when I woke up.

You had indicated after a 2 week period , I might be able to return to either Requip or Mirapex for treatment, but at the lower starting dose. Is this accurate , or do you believe I need to avoid these 2 medications altogether in the future, and stay with the opiates and or a combination of other drugs?

I was wondering if staying with a low dose of the Mirapex or Requip, along with an additional recommended drug, might keep we away from the augmentation and allow me some ongoing relief. At this point I am near desperate and willing to try any regiment to help manage my day and night symptoms with out hopefully turning into a day time zombie.

John E.

Medical Reply

Again, much of what may happen is variable from person to person. Although some patients can go back on a lower dose of Mirapex or Requip after augmentation has occurred, many cannot go back on even very low doses without augmentation re-occurring.

The safest bet is to stay on either opioids or anticonvulsants (or both) after the 2 week period of dopamine agonist withdrawal. However, if you feel brave enough, you can try adding low doses of a dopamine agonist to see if you can lower your opioid/anticonvulsant dose.

A Reply from John E.

Sent: Monday, April 06, 2009 8:02 AM
Subject: RE: RLS at wits end

Do the opiates treat the symptoms around the clock, or is this something I would expect to use just at bedtime for symptom relief then live with the symptoms during the day? Or do I take the opiates around the clock , continually as you indicated 3 times a day?

If around the clock, are the opiates successful in relieving the symptoms with out making me feel like a doped up zombie, if taken in the lower doses?

John E.

Medical Reply

The more potent opioids (methadone and oxycodone) have fairly long half-lives so can be taken about every 8 hours if needed for 24/7 relief of RLS symptoms (which is often the case in the withdrawal period). The dose needed varies from as little as 1/2 of a 5 mg tablet to two 5 mg tablets up to every 8 hours.

As far as the drowsiness (and other) side effects, that varied also quite considerably with most patients having little or no side effects while others can become zombies even with low doses.

Sent: Sunday, April 05, 2009 1:23 AM
Subject: RLS symptoms in left foot?

I have been diagnosed with having RLS for about 15 years. It is so severe that I have taken just about all of the medications recommended for RLS. At the moment I am on Neurontin , Restoril, Lortab and Wellbutrin . I am also taking B!2, calcium,
multivitamins, fish oil and omeprazole for reflux.

Now, on the pad of my left foot it is sore under the toes and causes my leg to feel as if it were going to sleep. Could this be part of the RLS? It is better if I walk but as soon as I sit or lie down it start again. .

Sure wish they would come up with a cure. I only get worse as I get older. I am 69 now and have this problem 24/7.

TW

Medical Reply

It may be more difficult to sort out this new problem as it does have some of the features of RLS. Peripheral neuropathies tend to present very similarly to RLS in that they occur in somewhat the same areas and are usually noticed more at rest.

However, RLS occurs less commonly in the feet (Dr. Ekbom originally thought that it did not occur in the feet at all), should be more generalized in the foot (and more likely should be in both feet) and should occur at the same time as your other RLS symptoms. If you tend to feel the left foot paresthesia (feeling of your foot falling asleep which is more likely to be due to a neuropathy rather than RLS) at different times than your other RLS symptoms then it most likely is not related to your RLS (which is what I think is most probable).

Sent: Monday, April 06, 2009 9:23 AM
Subject: Question about hydrocodone and acetaminophen

I have a question about hydrocodone and acetaminophen. I am 62 and have had RLS for the last 20 years. For the last 8 years the symptoms have been constant (24/7) and I’ve tried just about all the first-line drugs with little success: Mirapex and Requip cause augmentation and rebound, benzodiazepines turn me into a zombie and anti-depressants mess my head up.

Hydrocodone has worked well for me for the last 5-6 years although I’ve had to constantly increase the dosage. I am now taking eight 10/325 hydrocodone a day. Last year, I was only taking five tablets. I asked the doctor whether it wouldn’t be better to change to a stronger narcotic with less acetaminophen. He responded by saying that I didn’t have to worry as long as I was taking less than 4,000 mg. acetaminophen per day. He even said I could go up to ten 10/325 hydrocodone if needed!

In your March 26, 2009 response to Brian you stated that acetaminophen or ibuprofen, “do not help RLS, you are getting exposure to a drug that cannot help but may do harm. It is better to use lower doses of the more potent opioids that come as pure (not combined with any other drug) medications.”

Are there any studies out there that I could share with my doctor about the long-term effects of acetaminophen? I’ve searched the web and haven’t found anything about continuous long-term use.

Marv

Medical Reply

Your dose of hydrocodone is very high and does concern me as you appear to need escalating doses over time. I rarely go higher than the equivalent opioid dose of about 6 or so of hydrocodone. You may want to consider adding Lyrica or other drugs (at lower doses) to be able to lower your narcotic dose.

As far as the acetaminophen, 4 g (4000 mg) is often stated as a safe dose but many reports of serious side effects in people using this drug at much lower doses chronically have appeared (see below).

            Ann Pharmacother. 2002 Feb;36(2):331-3. Links

Comment in:

Ann Pharmacother. 2002 Sep;36(9):1481-2; author reply 1482-3.

Hepatotoxicity associated with chronic acetaminophen administration in patients without risk factors.

Bolesta S, Haber SL.

Department of Pharmacy, University of Kentucky Chandler Medical Center, Lexington, KY, USA.

OBJECTIVE: To evaluate the literature regarding the potential of acetaminophen to cause toxicity in adult patients without risk factors, when used chronically in daily doses < or = 4 g. DATA SOURCES: Key tertiary literature was reviewed, along with searches of MEDLINE (1966-July 2001). International Pharmaceutical Abstracts (1970-May 2001), and PREMEDLINE (July Week 5, 2001). Key search terms included acetaminophen, paracetamol, toxic hepatitis, hepatotoxicity, liver dysfunction, overdose, drug toxicity, and poisoning. DATA SYNTHESIS: Most tertiary references state that the maximum daily dose of acetaminophen is 4 g. Patients taking more than this amount, especially those with certain risk factors, are more likely to develop toxicity. However, a few patients may develop toxicity regardless of risk. An evaluation of the literature regarding the toxic potential of acetaminophen when given at doses < or = 4 g/d chronically (> or = 4 d) to adult patients without risk factors was conducted. CONCLUSIONS: Acetaminophen should be used cautiously on a chronic basis because several case reports show that it may be hepatotoxic at therapeutic doses.

Sent: Monday, April 06, 2009 10:51 AM
Subject: Recent severe episodes of RLS

I've been taking Ultram and then Tramadol (couldn't get the brand name covered by insurance) for almost 4 years now and recently had to suffer through 4 days without Tramadol. In those 4 days I've lost 2 work days because of exhaustion and lack of sleep. The symptoms went from legs, to butt, to triceps, to back and were unbearable. I even soaked in a hot tub of water (where I was able to get an hour or so of sleep).

I'm back on Ultram but it appears it no longer works and I've not slept well for a week now. I read in a RLS forum that you can develop severe RLS if you stop taking Ultram without weaning yourself off of it. Before I stopped taking the Tramadol for those 4 days, I never, ever had symptoms as severe as that. Now it seems I get them regardless. The Ultram has not been totally ineffective but has only served to keep it from getting into my back and triceps. Right now the only thing that appears to bring relief is a combination of 2 or 3 of the 5.0 mg Lortab combined with 200 mg of Ultram and the window of relief is "short", about 2 hours.

I've also recently been diagnosed with moderate Apnea and Narcolepsy. I sleep with a c-pap on and take Provigil to stay awake. I'm so sick of pill-popping it's not funny. The last few days I flat-out refused to ingest Lortab along with the Ultram. This can't possibly be good for me and if I take any higher dose of the Ultram I could suffer some severe breathing problems, which I don't need either. However, I've been logging my episodes for 2 years now and have identified a few RLS "triggers" that might be of some use to others.

1. - If I wear my belt too tight after a meal high in carbs (bread, pasta, etc.), that will trigger an episode no matter what time of day I have the meal (breakfast, lunch or dinner)
2. - If I wear heavy trousers made of denim or some other heavy fabric, for over 6 hours, I'll have an episode, usually within 30 minutes of sitting down. I think it noteworthy that loose-fitting soft fabrics don't seem to trigger an episode
3. - Back when Tramadol was still working for me, If I waited 2 or more hours after I ate dinner to take my medication, it was no longer effective.

Finally, I'm currently awaiting my first appointment with a neurologist, but in the meantime, I'm experimenting with heating pads on my legs and it looks promising. I know if I can keep my legs from getting restless, I don't have to worry about any of the other muscle groups. I've never, ever had an episode that didn't start with my legs. I've used a couple of those pads you heat in the microwave (because I got sick of getting in the bathtub in the middle of the night) and have had some success. I don't know if I was awakened by RLS coming back or because of the weight of the pads. I'm trying something light and electric this week.

Allen

Medical Reply

It is actually very unusual to have RLS worsen so dramatically after stopping Ultram for a few days. It could be that you were developing augmentation from Ultram (this is the only non-dopamine drug that has been shown to cause augmentation) without knowing it. However, with augmentation, you should have needed to increase your dose of Ultram over the past few years (or months). Stopping the Ultram would then cause the type of trouble that you have described.

Otherwise, it is very unusual to have the RLS worsen over baseline (where you were before starting the Ultram) when stopping the drug. You should be more concerned about worsening your sleep apnea with the hydrocodone (Lortab) than any due to Ultram.
Also, be careful with heating pads as they are only meant to be used for short periods (20 or 30 minutes) and can cause burns when left on for longer periods.

A Reply from Allen

Sent: Tuesday, April 07, 2009 5:24 AM
Subject: RE: Recent severe episodes of RLS

Thanks for your response. It is appreciated. I should have mentioned when I first started taking Ultram I was only taking 100 mg per day. Over the last year and a half I began needing more. So maybe my case is not so unusual. As far as the apnea goes, I'm wearing a CPAP at night anyway so I don't see how it can get any worse.

I don't want more Lortab either. I'm only taking them until next week when I see a neurologist. We'll go from there. Regarding the baseline. What I'm experiencing now is WAY WORSE than when I first started taking Ultram. Last night I tried the heating pads (ones with auto shut off set on medium heat). I think they actually triggered a very severe episode and I ended up in the tub once again.

Allen

Medical Reply

Based on your new information about your increased need and use of Ultram, it is more likely that augmentation may have occurred. However, it may take a week or two before you get back to baseline.

It is hard to assess the heating pad effect in this transition period off Ultram. Give it a try later to see if it works.

Sent: Tuesday, April 07, 2009 11:27 AM
Subject: Q-Vel

I also took Q-Vel for my RLS and it worked. Is it available anywhere??

Jean

Medical Reply

I am not sure about the availability of Q-Vel, but it is has never been proven effective for treating RLS. As the placebo effect is very strong in this type of disorder, it is very likely that most people who benefit from drugs like Q-Vel do so for that reason.

A Reply from Jean

Sent: Wednesday, April 08, 2009 11:33 AM
Subject: RE: Q-Vel

I’m sorry I disagree with you – I’ve had restless legs since I was 18 – I’m 60 now. Q-Vel worked for me – it also helped with leg cramps (which I did not have a big problem with) Personally I found that everyone wants to push Mirapex on everyone and since I don’t have restless legs every day I don’t want to take a drug every day.

Jean

Medical Reply

I did not say that Q-Vel does work for you. Rather that there is no medical proof that it works for RLS. Furthermore, most patients that have tried it do not get any relief. If you read our previous letters, you will see several RLS patients who benefit from sleeping with soap in their bed (and absolutely swear that it is a simple cure for RLS!).

The only drugs that we physicians can recommend are those that have been studied and proven to be both safe and effective for RLS. That is why we tend to push Mirapex and Requip.

A Reply from Jean

Sent: Thursday, April 09, 2009 11:39 AM
Subject: RE: Q-Vel

Thank you for your reply – I have also found that if I take a Xanax it helps. What’s with the soap? Is there a particular brand and where do you put it? Just curious but anything is worth a try. I just don’t want to be on any more medication as I already take Lipitor and a blood pressure medication.

Jean

Medical Reply

The original soap was Ivory but people have reported success with all brands of soap. Probably the stronger they smell, they more likely the placebo effect will occur. The soap is placed between the sheets.

Sent: Sunday, April 12, 2009 2:15 PM
Subject: Marie Goodwin and RLS?

Have you heard of Marie Goodwin in connection with the cure for RLS ?

Chris H.

Medical Reply

We have had several letters on our website regarding the Goodwin’s e-book and treatment for RLS. However, I have yet to hear from any RLS sufferer who has benefited from the “salt” diet. Below is the review of the Goodwin’s e-book by Dr. Wayne Hening in the RLS Foundation's newsletter, Nightwalkers in 2004. I agree with Dr. Henning's assessment.

Book Review Reviewer: Wayne Hening, M.D.

The Cause and Solution to Restless Leg Syndrome: Revealed for the First Time
Marie and Jeffrey Goodwin

The authors claim that RLS is caused by a diet relatively rich in salt (sodium). According to their theory, reduced sodium intake will cure RLS along with host of other disorders and discomforts. Indeed, most of the book consists of advice on how to maintain a low-sodium diet, and it actually focuses more heavily on diet than on RLS.

The authors — who are not physicians or scientists, but claim to be studying to become “doctors of naturopathy,” a field not recognized in traditional medicine — provide no solid evidence that reducing salt intake will cure RLS. They offer no data based on clinical trials or blinded studies of the kind generally accepted within the medical community. The reader is expected to accept the authors’ word for their claims, although they bolster their arguments with a variety of (mostly popular) sources in the holistic tradition that rejects most modern dietary innovations.

I can’t say for certain — since I’ve never tested or studied the idea that a reduced intake of dietary sodium won’t benefit RLS. Indeed, the diet the authors suggest appears to be a healthy one that would provide a variety of nutritional benefits. It’s not likely to prove harmful to anyone who tries it, other than to individuals who require increased salt intake (such as those needing to maintain blood pressure or who have adrenal insufficiency). They also suggest the use of magnesium supplements, a recommendation that has some basis in clinical literature. I suspect, however, that a reduction in salt intake will have little effect on severe RLS. Contrary to the authors’ hypothesis, RLS does not appear to be a disorder of muscle hyperexcitability, but instead a problem of abnormal activity in the central nervous system.

The role of psychological factors in RLS and its assessment is well known, and gives rise to a placebo effect in many trials. The low-salt diet will remain unproven until it is tested in a blinded fashion against a “placebo” diet (one that includes normal amounts of dietary salt). Because such a study has not been done, I can’t specifically recommend the reduced salt diet as treatment for RLS. On the other hand, since it appears to provide the elements required of a healthy diet, I see no reason to discourage individuals from undertaking a personal trial. To its credit, the book offers a variety of suggestions about making a low-salt diet fulfilling and palatable, and practical advice on how to manage it.

The book is published by Turning Point Publications as an e-book, downloadable from the authors’ website for $14.95.

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