Patient letters on RLS symptoms and remedies- Page 104

Sent: Thursday, February 14, 2013 8:45 AM
Subject: Opiates for recovering drug addict/alcoholic

I am an addict/alcoholic in recovery trying to make the switch from Mirapex to a non-dopamine agonist after experiencing augmentation. I am aware that you recommend using opiates during withdrawal phase before commencing with another class of medications e.g. Lyrica

During the withdrawal phase how do you proceed with recovering drug addicts as the usage of opiates may present problems e.g. Relapse, tolerance, abuse? In addition, if after augmentation and a switch to say Lyrica or Horizant and RLS is still bothersome, what do you recommend for recovering addicts?

Steve R.

Medical Reply

Unfortunately, you are describing one of the most difficult RLS situations to treat. Normally, only the opioids are adequate to help relieve RLS symptoms when stopping dopamine agonists like Mirapex. Gabapentin/Neurontin, Horizant and Lyrica (the alpha-2 delta drugs) work very well in most situations but not that well when stopping Mirapex.

I personally do not use opioids at all with patients who have a history of drug abuse as the risk is just high to trigger the drug habit again. What I would suggest is high doses of one of the above alpha-2 delta drugs and just go cold turkey off Mirapex. It may take a month or two to improve sufficiently so that your RLS symptoms are relieved fully by the alpha-2 delta drug and you will have a very tough time. However, that is likely the safest way to achieve your goal.

Sent: Wednesday, February 20, 2013 12:54 AM
Subject: Re: Opiates for recovering drug addict/alcoholic

After using Mirapex for 6 years (.5 mg), experiencing augmentation and then switching to Lyrica 5 weeks ago, I have been to hell and back withdrawing from Mirapex over the last 5 weeks.

Each night I take 300 mg of Lyrica at 9pm and it works until about 4am and then the RLS returns until about 8am. If I take 50 mg Tramadol with the same amount of Lyrica at night I do not have any problems but my sponsor does not want me to use any drugs like Tramadol which will jeopardize my recovery from drug addiction

Any idea how long withdrawal from Mirapex lasts? Is there a gentler softer way to quit Mirapex while switching to Lyrica? e.g. titrating lower the Mirapex while increasing Lyrica? I have explained to my local Neurologist here in Thailand that I am undergoing severe withdrawal and he wants to put me on Sinemet.

Steve R.

Medical Reply

Please don't start the Sinemet as that has the highest incidence of augmentation which tends to be even more severe than from Mirapex.

The only gentle way to avoid the Mirapex withdrawal symptoms is to take tramadol or opioids. The augmentation worsening generally subsides within 1-3 months.

Sent: Wednesday, February 20, 2013 7:37 PM
Subject: RLS

if hydrocodone is excellent and safe for restless leg syndrome , why don't most people with the problem take it? I am going to my doctor tomorrow to find relief and ask him for a prescription.

Jeanette S.

Hydrocodone is alright for occasional use to treat RLS symptoms. The problem is that it contains acetaminophen (Tylenol) which does not help RLS and if taken on a regular basis may cause kidney or liver problems.

In general, opioids like hydrocodone are reserved for patient who have failed Mirapex, Neupro and Horizant (in addition to gabapentin).

Sent: Saturday, February 23, 2013 5:09 AM
Subject: RLS

I have read that anti-depressants make RLS worse. What happens if I stop taking Fluoxetine  20 mg?

Shirley

Medical Reply

Since fluoxetine (Prozac) tends to make RLS worse, it is likely that your RLS will improve off the drug. However, this can vary considerably from patient to patient.

Sent: Sunday, February 24, 2013 6:34 PM
Subject: Abilify

I have severe RLS as well as depression. I took Abilify for depression for several months and during this time I had no RLS symptoms.
Unfortunately, I had to discontinue the Abilify and my symptoms have returned.

I have taken Requip for a few months, and it is effective, though I am already at maximum dosage and it is already becoming less effective. I was switched to Gabapentin a week ago and so far it does not work.

Why was Abilify so effective?

Karen A.

Abilify does have some dopamine like effects (similar to Requip) so that might explain its benefits for RLS. Not all patients experience this benefit however and some even get worse.

The more significant issue is the augmentation problem (worsening of your RLS from taking Requip) that is occurring. Most doctors will want to increase the dose even higher which will bring you only temporary relief (a few months) then your need for Requip will continue to worsen.

Gabapentin is not strong enough to treat the withdrawal from a dopamine agonist drug (Requip) especially once augmentation has occurred.

The best solution would be to see an RLS specialist who knows how to deal with this situation but unfortunately, there are not many of them available.

Sent: Sunday, February 24, 2013 9:55 PM
Subject: oxycodone vs. methadone for RLS

I have written several times in the past, getting most of my current , and best , treatment options from this site. I take 7.5 mg. of oxycodone to relieve my symptoms before going to bed. I do not take any medication for the RLS
during the day. Recently I wrote asking your opinion about switching to methadone since I found myself waking up around 4 am on numerous mornings, and the symptoms had returned. Generally I can get back to sleep, but since the methadone has a longer half life I wanted to suggest to my doctor that we try methadone over the oxycodone in an equivalent dose.

His reply was that he has no problem prescribing the oxycodone for me, but he does not prescribe methadone. Since these are both opiates , this does not make sense to me. Do you need a special license for each of the opiates? Would there be a reason for this? Are there additional properties in methadone not present in oxycodone that make this drug more addictive, or in some way more dangerous.

I was only interested in trying the methadone to see if it lasted thru the night longer. I don’t really wish to stay on any opiate forever and plan to try either Horizant or possibly take a real outside chance, and try the Neupro patch, since, until augmentation, Requip worked so well in the past.

His reluctance to try the methadone really has me perplexed and I am considering going back to a Neurologist that I used in the past to see if he would consider the switch. Just would like your thoughts on the difference between the two, so I can more effectively discuss this with the Neurologist should I go this route.

John E.

Medical Reply

Basically you are correct that there is no real difference between methadone and oxycodone as they are both opioids. Methadone is a little more powerful but otherwise acts on the same opioid receptors.

Part of the reason most doctors don’t like to prescribe methadone is their lack of familiarity with the drug (which may not be a bad reason). They also associate it with heroin treatment clinics despite the fact that patients there typically take between 80-200 mg per day. You may even find that most neurologists will not be comfortable prescribing that drug even though it does work better for RLS and we now have some literature to support that benefit.

Sent: Tuesday, February 26, 2013 5:52 PM
Subject: RLS after surgery

It's been quite awhile since I've been to these forums. In the past I always found information that was helpful. One of the people who replied to my question suggested e-mailing you. My RLS has been reasonably well controlled until now. I've changed meds, tried different combinations until I had something that was working. I had total hip replacement surgery 2 weeks ago & have had very little sleep since.

My surgeon refused to order my medications for RLS & by the time I could take my own meds it was too long without. Now I am trying to juggle my meds & so far no success. I currently take Mirapex .25 mg I pill after dinner along with Elavil 25 mg. At bedtime I take Lyrica 75 mg ii plus another 11/2 Mirapex.

Donna K.

Medical Reply

Sometimes surgery worsens RLS and this problem may last for weeks, months or indefinitely. It is not understood why the RLS may worsen permanently, but this happens fairly often.

There are many issues in your treatment that need to be discussed (such as the Elavil that typically worsens RLS). However for now you may benefit from opioid (Vicodin for example) that may help any post surgical pain and your RLS. Your long term treatment for RLS may need more expert management.

Sent: Tuesday, February 26, 2013 7:22 PM
Subject: Guidance regarding drug holiday

I have been suffering from WED for over 10 years. For the past 10 years I have been on Pramipexole 1-2mg divided dose. During the course of the 10 years I have gained 80 pounds, have episodes of syncope, and developed eating and shopping compulsions. For the past 3 years, in addition to the Pramipexole, I have been taking Sinemet daily. After reading your book, A Clinical Study of RLS, I discovered I have every symptom of augmenting. My symptoms start around 10 am, they have moved into my arms, and the pramipexole, and Sinemet in increasing doses no longer work. A

After much begging and an adverse reaction to a different generic pramipexole, my neurologist switched me to Horizant. I was told to stay on the daily dose of Sinemet. I asked about a drug holiday, but was told the Horizant would be sufficient to get me off pramipexole.

I have an appointment with a new general practitioner tomorrow in the hopes she will modify my medications. I live in a small town in Arkansas and I don't know how much, if anything, she knows about drug holidays or augmenting. After much urging from moderators on the WEB message boards, I am writing you in the hopes that you can give me some guidance I can take to my appointment to help my new doctor understand.

Any help or guidance you can give me would be greatly appreciated. I am already having very painful withdraws and it has only been 24 hours.

Kristin R.

Medical Reply

Unfortunately, your primary doctor does not know much about RLS and augmentation that is caused from dopamine drugs like pramipexole and Sinemet. However, many specialists (like neurologists and sleep specialists) also do not know much about augmentation and how to treat it.

The treatment of choice is to stop both the pramipexole and Sinemet but the Horizant is not up to treating the withdrawal from these drugs. That typically takes opioids and it is very unlikely that you will get help from your doctors in a small town in Arkansas. You could bring him a copy of my book but that may not be enough to have him prescribe the proper medications for your current problem.

Sent: Tuesday, February 26, 2013 8:28 PM
Subject: 3 years of severe RLS with my 13 year old

PLEASE HELP!!!! 3 yrs ago my daughter really started having severe issues with RLS. She always had issues with fidgeting and concentration in school, but this is when she started saying her legs were bugging her so bad she wanted to snap them off. Several doctor visits later it had actually risen up to her arms, and she was " pulling" so hard it was her entire face and extremities. We walked her into McMaster's Children's hospital and they diagnosed it as anxiety and started her on clomipromine.

When sitting it seems to be in her pelvic area and her lower legs are definitely the worst area effected. In 3 yrs she has been bounced on and off several different anxiety meds after clomipromine seemed to stop working. I do need to mention that none of these medications have really worked, they just make it livable. Her quality of life is awful, and our family is effected by RLS nonstop. She is irritable, she does not concentrate in school and is doing poorly, she is impulsive, she is agitated. I am not sure if these are side effects of the meds, but I do know her legs still bug her constantly.

Before Christmas the most recent anxiety med was so bad. She was bouncing off the walls, so hyper it was awful. I said enough, and slowly weaned her off the meds. Soon after this she completely passed out one night, a doctor who saw her in the emergency suggested POTS. At this point I have had so many docs guessing what this is . Over the holidays she went for 4 days without sleep her legs were terrible. I walked her into Toronto sick kids hospital where I finally got a doctor to take her on and start some neurology tests.

Problem is our first appointment is November 9, 2013!!!!!! It's February, how can we go on much longer? This is 3 years and even longer of living with this turmoil. All day every day. Her self esteem is awful, her school life is unbearable, at home we all just try to stay away from her. This is destroying my kids life!!!!!! Does anyone have any suggestions?

Nicky H.

Medical Reply

Your daughter needs to first have her diagnosis of RLS confirmed by a doctor who is an RLS specialist and knows pediatric RLS (there should be one at Sick Kids in Toronto). About 2% of children suffer from RLS so it is not uncommon in children but it is harder to diagnose.

It is very treatable in children but then again, it needs someone who is comfortable and knowledgeable treating pediatric RLS. There are several such doctors in the USA but probably very few in Canada (but I would suspect that they would be in Toronto). It is otherwise difficult to help you as you must navigate the cumbersome Canadian medical system (and being a USA doctor, I do not know much about that system other than it can be extremely slow for them to handle what they consider to be non-urgent problems like RLS).

A Reply from Nicky

Sent: Thursday, February 28, 2013 9:56 AM
Subject: Re: 3 yrs of severe RLS with my 13 yr old

Is there anything you can suggest I request from my doctor by way of tests to determine if it is anxiety, or a neurological problem. No one seems to know how to tell the 2 apart. What kinds of test should they be looking into?
Is there also something that is safe for a kid who is 13 that I can ask my doctor to prescribe. We have tried sooooooo many anxiety and anti depressants and none have worked.

Nicky H.

Medical Reply

It is often hard to differentiate anxiety symptoms from RLS and they both can occur together. There are no tests just taking a good history and having lots of experience and knowledge to differentiate the 2 conditions.

Checking a serum ferritin level may be helpful and treating with iron if the ferritin is below 50 could provide some help (if the level is below 50).

Sent: Saturday, March 09, 2013 9:47 AM
Subject: Nausea with Requip

I am a 59-year-old female. I have been taking Requip with great results for about four years. While it has always made me slightly nauseated, I could tolerate it. The past few weeks, though, the nausea has become much worse. Is there something I can do about the nausea? I don't want to quit taking Requip because it works very well for the RLS . Could RLS be a symptom of Multiple Sclerosis? I was diagnosed with MS about twenty years ao.

Nancy R.

Medical Reply

RLS is not a symptoms of MS although many neurological conditions may have a higher incidence of RLS than in the general population (although this may be due to the confusion in diagnosing RLS from the MS symptoms which may seem similar).

Taking Requip with food will typically reduce or eliminate problems with nausea. However, the food will delay the onset of action so take it a little earlier. Changing to the Neupro patch may also help this problem if taking it with food does not.

Sent: Monday, March 11, 2013 3:42 PM
Subject: RLS and Parkinson's

My father has Parkinson’s and also has restless legs. He tried Requip, but had to go off it because of leg pain. He also tried Neupro, but it made his legs swell. He is 77 years old, takes Sinemet CR 3x daily, takes Allopurinol for gout, B-12 vitamin, HTCZ, Coreg, baby aspirin, and eye drops for glaucoma. Other health history includes heart bypass surgery almost 30 years ago, and some thyroid problems. He is at great risk for falling, but he usually wants to get up frequently at night, probably because of the restless legs.

Once when he was hospitalized, they gave him Ambien, but the effect was wakefulness instead of sleep. I would like to know if you have any suggestions.

Jeanne W.

Medical Reply

Your father is a tough case as he is already on Sinemet for his PD and can’t take Neupro and Requip (did he try Mirapex?).

Other drugs to consider include Horizant (FDA approved for RLS) and Lyrica (not FDA approved for RLS but works well). However, these drugs may cause sedation (great if it occurs at bedtime but not so good if it hangs over the next day).

Another choice might be tramadol which if taken as needed may help the RLS symptoms for 4-6 hours and is well tolerated by most patients.

Sent: Wednesday, March 13, 2013 8:03 AM
Subject: Information needed

My mother has had RLS for over 50 years. Lately she is awakened with the feeling that her legs are "hot". When they feel cooler to her she is able to return to sleep. Has anyone else had such symptoms? Any help would be greatly appreciated.

Merial F.

Medical Reply

“Hot legs” are not that uncommon in RLS but we don’t know why the occur and what they mean. Some patients have the “hot legs” but that does not correlate with worsening RLS symptoms or inability to get back to sleep as it does with your mother.

Sent: Friday, March 15, 2013 5:19 PM
Subject: Magnesium therapy for RLS

I thought you would be interested in hearing about my recent experience with Magnesium to treat my RLS. First, a little history on my condition. I am a white male, 68 years old, very fit and active. I’ve been dealing with RLS since my late 40s. My condition is hereditary, as my father was afflicted with RLS, although that was long before it was recognized as the symptom it is today. If severe RLS (pain, involuntary leg movement, etc.) is a 10, I am about a 6.

I’ve used a variety of drugs to cope with my condition. Ropinirole, Mirapex, Ambien, marijuana, all used in combination with Vicodin. Over time, I found that none of these meds could be used over a long period of time, as I grew a tolerance to their affect. I compensated by mixing and matching these drugs as one lost its effectiveness. Then there were the side affects. Bizarre dreams, groggy mornings, dry mouth severe enough to wake me. In all cases, I rarely got a genuine, good night’s sleep.

I recently heard about magnesium therapy and decided to try it. I purchased an OTC bottle of 250 mg tabs and began taking one a day about 1 week ago. The results have been nothing short of amazing. After the first day, my nightly symptoms seemed to vanish. I continued my RLS meds but with each passing day, the RLS symptoms grew even less noticeable, until I have almost no symptoms at all (I’d say they are reduced by about 95 %). I have even been able to sleep through the night without any additional medication.

I don’t know what the long term will bring but I intend to continue on this treatment path until I encounter a strong reason to stop. If anyone has any specific information on magnesium therapy over the long term or known side affects, please advise. I hope this is of some help for other RLS patients out there.

Mono D.

Medical Reply

There have been studies on magnesium and RLS and they typically demonstrate that magnesium does not have any benefit for RLS. However, more studies would be necessary to fully study this relationship. I have received a few reports of RLS patients improving with magnesium but many more have reported not benefit. It is always possible that the improvement in your symptoms could be due to the placebo effect.

Sent: Saturday, March 23, 2013 2:20 PM
Subject: My RLS experience

I too have been diagnosed with RLS in the past 5 years after a sleep study and many yrs of little or no sleep. I am now 55 and have taken Requip 1mg for the past two yrs which helped immensely. Just recently the electrical pulses with RLS started coming on again in the evening even before I went to bed. I thought it might be my sciatic nerve starting to cause me problems, so I asked my family doc. He said it sounded more like my RLS starting up again, so I decided to double up on my Requip. I immediately noticed the early evening pulses went away and I was back to good sleep.

I called my sleep doc about this and he agreed and wrote a new script for 2mg Requip. I take one at night bout 1/2 hour before bed. I have a couple questions. Will I continue to have to gradually increase this Requip incoming yrs, what about the side effects? Also I noticed when the RLS first starting coming on, that if I slept on my stomach with my thighs pressed against the bed that I did not have the leg kicks. Also my legs felt much less tired in the morn.

Problem is that sleeping on my stomach hurts my lower back and is now impossible. I also noticed that stretching just before bed allows me to get some initial comfort, but after I would go to bed and roll into my side, I would end up in a fetal position, and the leg kicks would start up again. Has anyone found that RLS could be our leg muscles being in a relaxed state in the fetal position and start constricting during the night, firing out these pluses? It seems like if I start out sleeping on my back with my legs stretched out that I was fine, but I would ultimately end up on my side in the fetal position, and the RLS would be back.

The Requip has been a Godsend, but I worry that I will become tolerant to it, could RLS be alleviated by keeping our legs stretched out at night?

Ron J
Ohio

Medical Reply

RLS cannot be diagnosed from a sleep study. Therefore, it is not clear whether you were simply experiencing PLM (leg jerks) which can be diagnosed on a sleep study (and are often associated with RLS) or real RLS.

Requip does treat PLM quite well (just as it treats RLS very well). However, many patients may develop augmentation (worsening of the RLS or even PLM) when being treated by Requip over time.

RLS does occur at rest but to the best of our knowledge, is not related to the leg muscles being relaxed (RLS can even occur while standing) or being in the fetal position (most have similar problems when sitting or lying down).

Sent: Thursday, March 28, 2013 3:34 PM
Subject: Tendonitis and Requip

I have had RLS for over 8 years. I am currently taking 4 mg Requip: 1 morning/1 noon/2 bedtime, and 50 mg Tramadol: early evening.

Maybe this is a long shot. But I was wondering if Requip could cause (or contribute to) the development of tendonitis. I have been taking Requip the last 8 years. And during this time, I've developed tendonitis in both elbows, in my right foot, and most recently my right forearm. It never heals. It only gets worse. I've had physical therapy and steroid shots. Prescribed exercises do not help. I never had a single case of tendonitis before taking Requip.

Ed M.

Medical Reply

There is no known link between Requip (or tramadol) and tendonitis. Of course, that does not mean that there could be a connection in your case but that is a real long shot.

Sent: Friday, March 29, 2013 9:52 AM
Subject: RLS symptoms & medications

I have been diagnosed with RLS about 8-10 yrs ago but think I've had it all my life. It affects me day and night. I had a right knee replacement about 8 years ago and the symptoms in that leg is driving me crazy. I also have fibromyalgia and Pre-Diabetes.

I take Tramadol 100mg about twice/day. It does help with the pain of the Fibro but not the RLS. I was on Mirapex 0.125 mg in the early afternoon but it takes so long for it to work. Then I increased to 0.25mg but it makes me so sleepy. At night I take 2mg Requip, 1mg of Ativan to sleep. Some nights are good but most nights I wake up around 3-4 am with extreme pain and discomfort in my right leg with the RLS symptoms just terrible. It has brought me to tears. It's an aching pain not sharp but deep aching. I do get up and take more medication of Ativan and Tramadol but everything takes so long to work, 1 hr or 1 1/2 hrs. I have taken Vicodin because of other medical reasons and have noticed that it works pretty fast on the pain and RLS.

I have tried Lyrica, Neurontin, and so many others. I hate them all. Now, my doctor wants me to try Sinemet twice/day. I feel so drugs & nauseous most of the time with all these medication. I just don't know what to do. The leg pain is in both legs, just more severe on the right. I have started to wear a support sock and it does help a little. I also exercise 3-4 times a week in a pool.

Will the Sinemet help with the pain or the RLS or both? I am not sure why the doctor is giving it to me. He said it was for the pain. He sounded like he just didn't know what to do for my condition. I feel I need to see someone who really know about RLS and treatments.

Martha T.

Medical Reply

Your concerns about your doctor’s knowledge of RLS and taking Sinemet are both quite warranted. Sinemet is no longer used on a daily basis for RLS as it causes augmentation (a worsening of the RLS) in almost all patients within weeks or months.

Since you have been on most all of the common RLS medications without much success, you would be a candidate for opioid therapy. As you have already noticed, the Vicodin works very quickly but it contains Tylenol which does not help RLS (so can only result in side effects without any benefit).

I typically prescribe methadone in this situation as it seems to work better than the other opioids (and does not contain Tylenol). You should also have your serum ferritin level checked as when it is low (less than 50-75), iron therapy may help.

Sent: Tuesday, April 02, 2013 5:42 PM
Subject: RLS

I am a 42 year old mother of 2. I began having what seems to me like RLS for about 2 years now. It drives me crazy. I had to take a leave of absence from work because I just couldn't sleep, had no concentration and had suicidal thoughts. The long-term effects of not sleeping almost brought me to the brink.

About 1 year ago, I went to see a doctor to take care of a severe shoulder pain (bursitis). He prescribed oxycodone and oxyneo. For the first time in such a long time, the oxycodone game me instant relief. No RLS. Strangely enough, the oxyneo does not give me same relief. I don't feel addicted to the drug, I am addicted to getting my rightful good night's rest so I can function during the day. I fear for the day that my doctor will no longer renew my oxycodone prescription as I know that I will be doomed.

In the meanwhile, I have tried several other remedies. I tried Baclofen, Mirapex, quinine pills and water, magnesium, folic, zinc, iron, vitamin B, omega pills and all to no avail.

My father has suffered for as long as he can remember. He has a bar of soap in his bed but says that this wishful thinking.

My RLS causes me to have the unbearable urge to constantly move my legs. This is so frustrating and I have punched my legs numerous times in my desperate times in the wee hours of the night. I have tried gravol and any other sleeping agents, but this only aggravates my RLS.

Many times, when I am out of oxycodone and my prescription is not due to be renewed. I have to take a hot bath and pray that I fall asleep quickly, I then curl up in a leg twisting fetal position and hope that my sleep kicks in before the RLS come haunting me back.

Thank you for allowing me to share my story and suffering. Good luck to you all and God bless.

Flora
Montreal, Canada

Medical Reply

Of all the medications that you have tried and failed, only Mirapex has been found to help RLS (although, clearly not for you). The only other options in Canada are Requip (similar to Mirapex so it may not help you), Neurontin (gabapentin) or Lyrica. They are worth trying but if they fail, then you may be left with the opioids as your only treatment.

Oxycodone works quite well for RLS as should OxyNeo as it releases the same drug only a little more slowly. I prescribe methadone here in the USA but you will find that very hard to get in Canada.

Sent: Sunday, April 07, 2013 5:14 PM
Subject: Neupro Patch for RLS?

I have had Restless Leg Syndrome for many years but did not know what it was.  Almost three years ago, I started on Requip. The side effects were horrible. It did help the pain; however, the next day I felt drugged almost the whole day. Now I am on the patch Neupro. I have searched for the doctor’s comments regarding this patch; however, have not been successful. It, for the most part, does help me through the night but again, I cannot get out of bed until noon the next day. I am doing a lot of research when I cannot sleep at night and alas, found out last night I should not be eating ice cream. That was quite a jolt. I am very careful with my diet and have eliminated several of the medications I was on since I have read they make the disease worse.

There is no doubt that I am sleep deprived. I take Ambien once in a while but can only take a minimum dose since I am one of those who goes shopping on EBAY; makes snacks, chat with friends on the computer and the next day have no memory of it.

 Another issue I am having since I began the patch is shortness of breath. This concerns me and I am going to my Internist to make sure my lungs are okay. To say that RLS meds have taken control of my life would be a understatement. I know many cannot even get the twitching and pain under control and I am grateful. However, my quality of life is not good. I have read so many of the doctor’s comments regarding all of this but as I said at the beginning, no mention of the patch.

Thank you for allowing me to share this with you and look forward to a response. Just for the record, my father had this but in those days no one had clue one. They told him he had rheumatism and arthritis and I have memories of him always waking up in the morning almost crying about the pain he was experiencing.

If it would help, I would be happy to provide you the regime I use including a roller back massage chair, hot spa tub bathes, a machine that compresses my legs and anything else that helps.

Sandra G.

Medical Reply

You have not read much about the Neupro patch so far as it is relatively new and not many patients have had this prescribed as yet for their RLS (this is changing quickly). Neupro delivers rotigotine (similar to Mirapex, Requip but delivered through the skin) and very often treats RLS symptoms much better than the older dopamine drugs which are much shorter acting.

Neupro is not typically associated with shortness of breath although anything is possible of course. It should not affect your lungs otherwise.

You may want to discuss the use of Horizant in combination with Neupro with your doctor as that may work even better (if you don’t experience the side effect of next day sedation).

There are other alternatives but those usually require a physician who is more expert in treating RLS.

Sent: Thursday, April 11, 2013 9:11 AM
Subject: oxycodone

I have written a number of times thru the past few years, looking for the most up to date information on treatment of my RLS, and you have been kind enough to reply. I have been on a variety of drugs to treat my RLS, some with great success like Requip till it augmented and I was forced to stop. My most current treatment was a 10 mg. dose of oxycodone that I was taking once a day about an hour before bed. I was taking this for about 6 months with decent success, but was constantly worried about addiction, even at the lower level. I was told that at this low dose, addiction/tolerance shouldn’t be a concern, so I was not worried about the nightly use of the oxycodone.

For the last 3 months , maybe even more than that, I have experienced various minor symptoms such as stomach cramps, anxiousness, fatigue, and depression. Again , these symptoms were nagging , but not overpowering until the last few weeks or so the depression seemed to worsen. 6 days ago , I decided to stop taking the oxycodone, just to see if even the low dose I was taking ,once per day, might be giving me minor withdrawals during the
Day. Of course doing so, left me to deal with trying to sleep around my symptoms , since I no longer had the oxy to relieve them.

I did indeed suffer much increased anxiousness, and stomach cramps , especially for the first few days, but the worst was the increase in depression, with it coming and going in waves for the first 4 days. On day 5 , the depression lifted pretty much entirely , and I really feel better than I have in months. Of course I am left to deal with late nights, night walking and hot baths to try and get some sleep. Fortunately, I am pretty much retired , and able to work around the late nights by sleeping in somewhat during the mornings.

I guess I am one of the fortunate ones in that I am able to get to sleep sooner or later thru the night. Of course there is always the possibility of a placebo effect of me quitting the oxycodone and believing it was causing me problems, but I don’t think that would explain the increase in depression the first few days , then the windows of relief that would come and go , and finally pretty much the complete lifting of it on day 5 and 6.

I have a current prescription for Horizant that I filled last week knowing I was going to try life without the oxycodone. I was prepared to , again, deal with my RLS medication free, but I know Horizant can offer some relief for some people. Having gone thru horrible withdrawals from clonazepam that an unknowing neurologist hooked me on in the past, and my recent experience with oxycodone, I am now very reluctant to even introduce The Horizant to my system, having read about the possibility of suicide thoughts and deepening depression that have been experienced by some patients while on this drug. The depression is the One most devastating symptom I think I have dealt with, and do not want to experience that again if I can help it.

With your experience with this drug, do you think the chances of this happening are high, and if I do try it and experience the depression, can I stop the drug cold turkey, with a pretty much instant recovery from any symptoms, or is there a taper period that would be necessary with it?

John

Medical Reply

Horizant may cause an increase in depression or even suicidal thoughts. Although this is not a real common problem it does occur frequently enough that it is clearly a concern especially in a patient with a history of depression.

In your case, if you are to use this medication, you should make sure that your doctor and family/friends are aware of this possibility and will help you take action if problems occur. There is no way to know whether you will suffer from those problems but you certainly are at increased risk.

Sent: Thursday, May 02, 2013 10:48 AM
Subject: RE: I have severe RLS

I found out I have liver disease and my family doctor has taken me off most of my medications. I have been taking a high dose of Requip for three months and I kept getting sicker every day. I was on nine milligrams. He wants me to take one milligram three times a day until I see my Neurologist. I have tried that dosage and it doesn't work. What medication would be a good choice for me considering this and my liver disease? I think I will have to change it.

The Requip also can cause liver disease so I want to change medication. I am asking so when I see my neurologist I'll have some ideas of my own. My doctors don't seem very knowledgeable about Restless Leg Syndrome.

Barbara S.

Medical Reply

Requip does not typically cause liver damage but it is metabolized by the liver so may not be cleared very well in people with liver disease (this will cause your levels of Requip to much higher in the body). Mirapex is a better choice as it is cleared by the kidneys and liver disease does not affect the drug.

Since you are already on high doses of Requip and having trouble with your RLS, you may have augmentation (a worsening of RLS that often occurs with taking Mirapex or Requip) these medications may not be a good choice for further RLS treatment in your case. However, stopping the Requip will be very difficult and it takes an RLS specialist to manage the transition to other drugs.

Alternative choices include Horizant (which is in short supply until about June) and opioids (which most doctors do not like to prescribe). You may need to see an RLS expert although they can be hard to find.

Sent: Friday, May 03, 2013 6:24 PM
Subject: I need a new doctor

I live in a small town in Arkansas with doctors who are not familiar with treating augmentation. My neurologist is currently treating me for RLS/WED. She has me on 1.5 mg pramipexole in the morning, and 1.5mg pramipexole, 1mg Klonopin, 50/200 Sinemet, and 50 mg Lyrica at night. I have A, B & C on the augmentation chart.

I know from your articles and book that I am well over the maximum dose of pramipexole and I have been taking the combination of pramipexole and Sinemet for over 5 years with a steadily increasing dose of pramipexole. My neurologist believes my dose is low and doesn't acknowledge my desire to get off it. In the 13 years I have taken pramipexole I have gained 100 lbs, have heart problems, pitting edema in legs and feet, swelling in arms, compulsive overeating, memory loss, paranoia and insomnia. She continues to raise the dose. I have tried Horizant, and Neupro, but couldn't take due to racing heart and nausea.

I have an appointment with a 36 year old small town GP who has heard of WED, but likely isn't familiar with augmentation. I plan to bring your book with the dosing scale of pramipexole and try to explain augmentation. My symptoms usually start at 9 am.

In your expert opinion, what medications would you take me off of and what medication would you put me on and at what dose? I am hopeful that if she has guidance and the views of another doctor she will be more willing to help me.

Kristin R.

Medical Reply

Unfortunately, you are a textbook case of augmentation that occurs with pramipexole and Sinemet (and the combination virtually ensures the emergence of augmentation). The response of your neurologist is also unfortunately much more common that it should be in that they treat the worsening RLS from augmentation by increasing the dose which works for Parkinson's disease but adds fuel to the fire to further exacerbate RLS. Your thought on the dosage of pramipexole are very correct and my current recommendations for pramipexole is a maximum dose of .25 mg per day (therefore, you are in the stratosphere of dosing for this drug).

Furthermore, Klonopin is not an RLS drug but works to help RLS patients fall asleep (and there are much better sleeping pills than Klonopin which has a 40 hour half-life). The only drug that you are currently taking that makes any sense at all is Lyrica and 50 mg is a very low dose (higher doses may be helpful but may cause more edema/weight gain).

The only medication class that will enable you to get off pramipexole and Sinemet are the opioids. That is what I use all the time with my favorite one being methadone (since it seems to work the best and is also very well tolerated in most patients but most doctors are not familiar enough with the drug to prescribe it). Second choice would be oxycodone then other opioids.

Attached is my most recent article on how to treat augmentation and dose limits for dopamine agonists like pramipexole. You can bring that to your doctors/neurologists and my new book (The Clinical Management of RLS which is the newly published second edition) which you can purchase goes into even more detail about how to treat your situation.

A Reply from Kristin

Sent: Monday, May 27, 2013 11:31 AM
Subject: Pramipexole withdrawal

I found an GP in Arkansas who was willing to help me get off pramipexole. I am her first serious case of WED and the first patient she has ever had who augmented. She was aware of ferritin and I have been tested, but am awaiting results. She put me on 5mg of oxycodone twice a day and the plan was to slow taper and wean off in a month. Even with the taper, I was having anxiety issues and pain.

Since I had a long weekend, I decided to stop cold turkey. Let me just say it hasn't been a fun, relaxing weekend. I am concerned about a few things and I didn't know who else to ask. Is it "normal" to have panic attacks, where I am agitated, itchy, semi frantic, mind racing and I just want to jump out of my skin?  Is it "normal" to have manic eating episodes?  How long does this last? I am taking .5mg Ativan every 4-6 hours, but it's not enough.

Is there anything, besides time, that will stop the manic behaviors? 5mg of oxycodone isn't helping me at night, is that a high dose? I sincerely thank you for any guidance you can give me.

Kristin R.

Medical Reply

The issue is that the oxycodone 5 mg is not near enough to cover your withdrawal from pramipexole. It usually takes 1-2 tablets up to 3 times a day. This will let you stop the pramipexole cold turkey without much problem. However, you should check with your doctor before following this advice. Once your dopamine receptors get reset (which may take a few weeks to months), you will need a lot less oxycodone.

Adding Ativan should be unnecessary if you are well covered with the oxycodone. It is just one more medication that you may become dependent upon (especially at the high dose that you are taking) and does not work very well for getting off pramipexole (which is why you are taking such as high dose).

Sent: Saturday, May 04, 2013 12:29 PM
Subject: Food allergy (see previous letter, Friday, October 19, 2012)

I suffered for years with RLS, worse in recent years coinciding with a parasite infection. Once we cleared the parasites, my symptoms continued. I finally was given a food allergy test (Alletess), deleted nuts from my diet and have not had a single twinge in weeks. This is not a plug for that company, just a ray of hope that a cure is possible – keep trying!

Alexandra H.

Medical Reply

Thanks for your letter. We will post it for others who might benefit from you experience.

Sent: Wednesday, May 08, 2013 8:28 AM
Subject: Questions

I use .25 mg Mirapex for my RLS. I also take 75 mg Lyrica 2x daily for neuropathic foot pain. Because of the “brain fog” and other side effects of Lyrica, I am looking for another pain medicine. Please tell me about Topamax and Cymbalta, and if one of these are ok for RLS patients.

Also, my PCP says that Lyrica works to augment the effect of Mirapex. Do you agree with that? How would a change in pain medicine affect my dose of RLS medicine?

Finally, my father has Parkinson’s disease, and RLS. He has recently been prescribed Seroquel 25 mg to sleep at night. Could this have an adverse effect on his restless legs?

Jeanne W.

Medical Reply

Lyrica is actually a very good RLS drug (as long as the patient does not suffer from its common side effect of sedation as in your case) that I use very often for my RLS patients. It does not “augment” (this is not really a medical term in the sense that you are using it) Mirapex but as it treats some of the RLS symptoms, the patient on this drug should need less Mirapex.

Topamax may help some RLS patients but it is not as good as the alpha-2-delta class of anticonvulsant drugs (gabapentin, Lyrica, Horizant). Cymbalta is an SNRI antidepressant that typically worsens RLS.

Seroquel typically worsens RLS.

Sent: Mon, May 13, 2013 at 5:03 PM
Subject: Question about Neupro Patch

I am a 61 year old female and have had RLS since I can remember, beginning at about age 2. I wrote to you last summer regarding going off Mirapex since I was augmenting. After three agonizing, painful weeks, I succeeded going cold turkey. I began taking Horizant, 600 mg at 5:00, but had to increase it to two 600 mg tablets as I was not getting relief with only one tablet. For 8 to 10 months I slept every night like most people, a godsend after so many years of little sleep, but the past couple months Horizant is just not working. Almost every night I have to take at least one half of a 7.5 mg Vicodin which my husband's doctor prescribed for him since my doctor does not like to prescribe any kind of opiate whatsoever.

I had filled a prescription for Mirapex prior to going off of it, and for the past two nights I have taken .25 mg an hour or so before I fall asleep out of sheer desperation (I am still taking the 2 Horizant tablets as well). I am again able to sleep, but know that this is probably a really bad idea because of the torture I went through to get off the Mirapex last summer. Another huge problem I have developed since going on Horizant is very severe depression and even occasionally I will think suicidal thoughts. I have never been one to be depressed, never ever thought suicidal thoughts, but I just can't shake this. I have also become really difficult to get along with--ask my kids--along with the depression, and I am just not liking myself very well right now!.

My question is whether or not you think going on the Neupro patch would be worth a try? Is there any kind of tapering off period to stop taking the Horizant? What do you think about taking the Mirapex again with the Horizant? I honestly feel that I need to at least try this Neupro patch, or something else if there are other new drugs that have become available, because of this severe depression and my awful moodiness from the Horizant. Do you think I should consider asking for a prescription for Wellbutrin?

Charlotte H.

Medical Reply

Unfortunately, Horizant (as well as gabapentin/Neurontin) has been associated with depression and suicidal thoughts. As such, you should discuss going off this dedication with your doctor. Since you are on 2 tablets, going down to 1 tablet for 2 weeks then stopping would be a good idea.

It is unclear why your RLS should worsen suddenly after doing well on the 2 Horizant tablets per day. You might want to have your serum ferritin level checked (sometimes low levels may cause worsened RLS symptoms) and also make sure that you are not on any new drugs that worsen RLS (check our site for this list).

Going back on Mirapex has a very high chance of causing augmentation again. Therefore I would not recommend doing that but changing to Neupro might work. We are still not that sure of this approach as Neupro has not been available for that long and we need more experience with the drug. You may also need a small amount of an opioid (not Vicodin as it contains Tylenol which does not help RLS) so you may have to see a specialist in order to get that drug prescribed.

You might need Wellbutrin but first see how you do off the Horizant as it is possible that they depression may resolve completely off that drug.

A Reply from Charlotte

Sent: Monday, May 13, 2013 2:24 PM
Subject: Re: Question about Neupro Patch

Thank you so much for your quick reply. I need to schedule an appointment to get refills on my medicines soon so I will ask my PCP then about prescribing the Neupro. I am not taking anything new at all. I've been on Benicar HCT 40/12.5 for a long time, so I don't think that would be it, do you? I have gone over things in my mind but I honestly can't think of one thing I'm doing differently.

At this point, my biggest concern is getting off this Horizant to try to get my normal self back again, but I know until I taper off of it, and to get much sleep, the Mirapex will help. Do you think I'm inviting danger if I go on the Mirapex .25 for two weeks with the one Horizant? How long will it take for the Neupro to begin working? What are the opioids you prefer for RLS?

Charlotte H.

Medical Reply

It is hard to predict if you will have problems with Mirapex for 2 weeks but most likely that is too short a time to cause augmentation but you might still get some withdrawal increased RLS symptoms after stopping it.

Neupro works after 2-3 days but you have to titrate the dose up on a weekly basis (there are 3 dose levels).

My favorite opioid is methadone as it works the best on the most patients followed by oxycodone.

Sent: Tuesday, May 14, 2013 3:34 PM
Subject: side effects of hydrocodone and Mirapex combined?

Can you tell me if periodic emotional downswings might be a result of my RLS medications: 1.5 mg Mirapex and 7.5 mg hydrocodone, both taken once daily, about two or three hours before bedtime. I have been on Mirapex for about 8 or 9 years, possibly 10, with increasing dose, and then when that failed to work anymore, hydrocodone was added. Together they work well.

Most nights there are hardly any RLS symptoms (if I take it early enough, about 8 or 8:30). Some nights a brief period of symptoms, usually now in my arms. I have even been able to sit through a movie or a play without any symptoms, if they are engrossing enough.

I've noticed now that every so often I have a really strong emotional downswing. Could this be the result of these medications? Is there a limit to how many years one can take these drugs? I am 74 now, I started on Mirapex probably in 1998 or 99, I was around 62 then, I think, and added the hydrocodone about 3 or 4 years ago.

Gyana P.

Medical Reply

Although depression is not typically a side effect of Mirapex (however, I have seen a few cases of depression from dopamine agonists), at the very high dose that you are taking, side effects do occur more often. I currently try to limit my patients to Mirapex .25 mg per day. The only way to figure that out would be to reduce the Mirapex which would immediately worsen your RLS symptoms dramatically and/or require you to markedly increase your hydrocodone.

However, it is also possible that the hydrocodone might be causing depression as opioids are known to have this side effect. Again, the only way to figure this out would be to reduce or eliminate the hydrocodone. It is not dependent upon how many years that you have been on the above medications but rather the dose of your medications (of course, you may become more sensitive to these higher doses as you get older). Additionally, you are getting Tylenol with the hydrocodone does not help your RLS so you have the risk of side effects (low, but could be a problem over years) without any possible benefit (changing to oxycodone might be a good idea).

Your depression could be due to other reasons (or no discoverable cause) but you would have to go through the above process if you want to be sure that it is not due to your medications.

Sent: Wednesday, May 15, 2013 4:58 AM
Subject: worsening symptoms

I have had RLS for about 13 years and it has now progressed to my arms. I have had to increase my pramipexole to two doses of pramipexole a day: .18 mg @ 11 am and .375mg @ 6pm. My symptoms are now starting at 3 or 4 in the morning. Two years ago I tried to go off the Mirapex for several weeks with the hope of eventually diminishing my symptoms. I tried Lyrica and hydrocodone. It was a nightmare and did not work well. Then I went back to Mirapex and started using it twice a day. I just have some blood work done testing for iron. The results were as follows: Iron-16, TIBC-71, Iron Saturation-0.22, Ferritin 58.

My questions are:
1) Is it wise to stop taking my 11 am medication for a few weeks with the hope that it will reduce the augmentation when I start up again?
2) Is it possible that my lab results, in particular the TIBC results, suggest that my iron levels might be causing the increase in my symptoms and if so, what would you recommend?
3) Or Should I increase my dosage in the evening?

Much appreciation from Canada

Beverly K.

Medical Reply

You are clearly experiencing augmentation so just reducing your dose of Mirapex will make you suffer for several weeks with little or no chance of making the medication work better (perhaps for a few days only) in the long run or reduce the augmentation that will quickly return.

Your ferritin level is reasonable so taking oral iron would be of little benefit (at that ferritin level, the body absorbs less than 2% of oral iron anyway).

The only treatment would be to stop the Mirapex and take more potent opioids (methadone which you will not be able to get in Canada or oxycodone which you might be able to get) with or without Lyrica (I usually add Lyrica later so as not to be confused by side effects from 2 drugs and with enough potent opioids, the RLS symptoms should be adequately controlled after stopping the Mirapex).

Increasing the Mirapex will work great for a few weeks or months then will result in significantly worsened augmentation.

Sent: Saturday, May 25, 2013 1:47 PM
Subject: Help for my RLS

I am a 36 year old male who has had RLS, more severely than not – for 15 years. (My mother has it, and my doctor said it was genetic). A small dose of Mirapex .25 mg worked well for a long time. Over the years I’ve had to increase up to .75 mg. However, recently at this dosage I decided I was taking quite enough, as the drug was rather dramatically starting to lose its effectiveness. Sometimes simply not working.

I read about “drug holidays” and decided to go without the drug so it could regain its power. I did not sleep for 4 days. Not a wink. I went back on Mirapex and only needed .25 again. This didn’t last long. SO- to the crux of my inquiry. My doctor said that I should try to take Requip for a few weeks, then Mirapex, and alternate them… he said this is effectively a “drug holiday”. ( I do not see how, as they are both dopamine agonists)

I started taking the Requip and it worked well, but it began very quickly to wear off after 5 hrs of sleep. Then I would wake up, go back to bed and have RLS badly. I took the Requip for 4 weeks and considered maybe I had had an efficient drug holiday. I thought, maybe I will try to go back on the Mirapex, and this time take the Mirapex ER. (extended release) I took .325 mg, after 2 hours it was not working at all. I took another .325 mg. The RLS never went away until 9 hrs later. Then it was gone totally. So to sum this up..

Will Requip provide an effective “drug holiday” from Mirapex (and vice versa) or not? And why in the world did the Mirapex ER not work for so long after I took it?? I am not sure what to do, my doctor is not easy to get in touch with. I really hope one day to find the perfect equation with these meds as I know they both work… I just haven’t found it yet. Your insight and suggestions are greatly appreciated!

John B.

Medical Reply

You are correct in much of what you say in your email.

RLS has a very strong genetic component. Substituting one short-acting dopamine agonist for another typically does not work as they both act on the same dopamine receptors and in the same fashion. It is not something that we do for tolerance problems or more likely the augmentation that you are experiencing.

Mirapex ER has a slow onset and the .375 mg tablet is spread over 24 hours so one tablet cannot substitute for .75 mg (especially if the .75 mg is taken over a shorter period of time which is what you are most likely doing). Even .75 mg of Mirapex ER (2 tablets) does not really replace the .75 mg of short acting Mirapex but the ER version may take a few days to come to steady state (equilibrate) and become more effective. However, that is a high dose of Mirapex (ER or short-acting) and will most probably lead to further augmentation (worsening) problems with your RLS.

Drug holidays are typically not the answer in your situation. It requires much more expertise and a totally different treatment strategy that only doctors who are well versed in treating RLS and augmentation can handle.

Attached is a recent paper that I published on this topic.

Sent: Saturday, May 25, 2013 10:32 PM
Subject: Marijuana?

I am a 78 year old male who is suffering from a degenerative neurological disease akin to Parkinson’s which is greatly affecting my walking, as well as advanced RLS. My doctors tell me that there is no cure or improvement for the walking disorder but I have been taking pramipexole every night for a couple of years and it seems to be making at least a slight improvement in the RLS. A few months ago my doctor put me on Horizant, which I was taking with the pramipexole every night at bedtime and I experienced a pretty significant improvement in both my sleep and the RLS.

Then, a month or so ago, they discontinued the manufacture of Horizant and my doctor put me on Neupro patch instead. It seems to be working about as well but is a pain in the butt to change every 24 hours.
It also has some minor side effects, such as a slight rash and itch and extreme sleepiness during the day. I also take three (sometimes fewer) oxycodone tablets (5/325) every day, which makes a significant improvement in my RLS and mood.

Rather than go back to the Horizant, which should be on the market again in a week or two, I’m thinking about getting a card for medical marijuana, which some people with RLS say completely eradicated their RLS symptoms.
Boy, to smoke some grass or eat some cookies containing the stuff rather than bother with the medications I am now taking would be a real godsend. Even if the marijuana solves the problem of the RLS I will almost certainly continue to take the oxycodone, as it makes me more affectionate to my family, more positive in my mood, more willing to perform tasks and chores, etc.

Don’t you think it’s worth a try?

Richard

Medical Reply

Medical marijuana does eliminate RLS symptoms quite well for most users. However, when smoked (which is typically the quickest and most potent effect on RLS), it works best when taken for bedtime RLS symptoms as it kicks in very quickly but it does not last very long (and hour or 2 which is good for patients with sleep onset RLS issues).

The edible marijuana does last much longer but if used for daytime symptoms, you will need substantial doses of the drug that may eliminate your RLS symptoms but leaves you “stoned” throughout the day. Although that may not be a no go issue for some people, most patients would likely not want to spend the rest of their days continually high.

My advice would be to get back on the Horizant in the next week or 2 when it becomes available (officially June 3).

You may also want to consider changing the Percocet to pure oxycodone to eliminate the Tylenol that does not help RLS but can cause side effects with long term usage.

Sent: Thursday, May 30, 2013 6:17 AM
Subject: RLS?

I am new to the subject of RLS, and am wondering if I have it. If I answer the questions on the diagnostic tool at http://www.rls.org/wed-RLS-diagnostic-tool, it would seem I have it. But, when reading testimonies of people who do have it, then I am not sure. Maybe it is a mild RLS? Here is my story:

I have had increasing problems sleeping at night. I have ADD (inattentive type), and take 40mg of Adderall daily, which works wonders. I have been on this for over 10 years. I also have sleep apnea, and have used a cpap for the last 18 months, which works wonders also. But still, I have problems getting to sleep, and staying asleep. My wife, a clinical psychologist thought it was anxiety. My doctor prescribed Klonopin for short term, and it was a miracle. I fell asleep, and stayed that way all night. Next, he put me on Celexa, 20mg/day. This made the problem much worse, and I am trying to get off it now.

While trying these different drugs, I read a lot about anxiety, and am convinced that I don’t have it. As I have gone through this process, I tried to be more thoughtful about what is happening to me when I don’t sleep. I realized that my legs feel very energized many nights for no reason. I resonate with how RLS people say it is difficult to explain how this feels. It is not so much that this causes my legs to jerk or twitch, but that the different muscles tense up randomly. At first, I viewed these sensations as indicative that I was anxious. But now, I am wondering if these sensations are not indicative of something else, but are the problem itself.

Here are my answers to the diagnostic tool:
1. Do you have, or have you had, recurrent uncomfortable feelings or sensations in your legs while sitting or lying down? Yes.
2. Do you, or have you ever had, a recurrent need to move your legs while sitting or lying down? Yes. At first I thought it was involuntary. But now that I am aware, I will resist the urge to flex my muscles. Still, I end up moving them, tensing up the muscles, etc.
3. Are you more likely to have these feelings when you are resting (either sitting or lying down) or when you are physically active? Resting. I don’t notice it as all when I am walking.
4. If you get up to move around when you have these feelings, do the feelings get any better while you keep moving? Yes.
5. Which times of day are these feelings in your legs most likely to occur? Please choose one or more. The evening is the worse, but I can feel it during the day while sitting at my desk.
6. Will simply changing leg position by itself once without continuing to move usually relieve these feelings? Never. I feel the impulse to move around, but it makes no difference.
7. Are these feelings ever due to muscle cramps? Never

I don’t know if my doctor knows much about RLS. I have an appointment in two weeks, and would like to gather as much information as possible before I meet with him. Any insight or direction you can give would so much appreciated.

Tim M.

Medical Reply

Your symptoms are very suggestive of RLS. The best test is whether you can resist moving when you get the abnormal sensations. If you can stay still with only little discomfort, you may not have RLS (or possibly very mild RLS). If the urge is virtually irresistible and you MUST move to get relief, then you most likely have RLS.

Celexa typically makes RLS worse.

Sent: Thursday, May 30, 2013 6:55 AM
Subject: Other options?

I’ve tried Requip, Mirapex, Neupro, Horizant, Neurontin, and Tramadol. So far, the only medicine that has given me complete relief is the Tramadol, but it also started giving me sleep apnea (which was making me excessively sleepy during the day, giving me “sleep attacks” - making it dangerous to drive even short distances). And I vomit whenever I take Vicodin, Darvocet, or Codeine.

Is there another “pain medicine” out there I might be able to take that would relieve my RLS, but not cause sleep apnea or vomiting? Thank you for your time.

Mike K.

Medical Reply

Tramadol is your best bet in the pain category for NOT causing sleep apnea or sedation. The other more potent opioids tend to do this much more commonly and worse. However, every patient is different and you may react differently to more potent opioids like oxycodone. The nausea and vomiting can be relieved by taking Zofran prior to the opioid, but we really don’t like having to prescribe a medication to treat the side effects the original medication.

Sent: Monday, June 03, 2013 6:31 AM
Subject: Worsening of RLS after starting Zanaflex (tizanidine), Zyrtec (cetirizine)

I was recently prescribed these drugs for bad muscle spasms in my neck and terrible allergy problems. I take the Zanaflex 3 times a day, with one dose taken approximately 1 1/2 - 2 hours before bedtime and the single dose of Zyrtec also taken 1 -2 hours before bedtime.
I currently take 0.5 mg Ropinirole and 0.5 mg Alprazolam at bedtime for RLS. Occasionally I take an Ambien CR.

I have noticed a significant increase in RLS symptoms since starting these two drugs. Have you heard of either of these drugs worsening RLS? Would a change in dosing schedule (Zyrtec in AM, taking 3rd Zanaflex further away from bedtime) perhaps help. At this point in time I think I need to take both the Zanaflex and Zyrtec for my problems.

Tom S.

Medical Reply

Zyrtec occasionally may worsen RLS (and cause sedation) but if you have been on that medication for a while without problems then it is unlikely to be the culprit.

You are taking a lot of sedative medication . Alprazolam is a benzodiazepine and when you take Ambien CR you are just adding another benzodiazepine (albeit one that acts more selectively on the benzo receptors). Zanaflex works mostly by causing central (brain) sedation so you are now adding a third sedative.

RLS does tend to worsen with sedation and that might be a reason for you worsening (in combination with the other drugs).

However, there could easily be other reasons (and there is a long list) for your RLS worsening that could have nothing to do with your drug therapy.

Sent: Tuesday, June 04, 2013 5:56 PM
Subject: Serotonin norepinephrine reuptake inhibitors (SNRI's) and PLMS

A year ago I was put on Cymbalta for migraines and it worked like a charm. I had taken Cymbalta years ago for pain but stopped when I became pregnant and never felt sleepy. Anyway, after being on Cymbalta for roughly 4 months I started experiencing daytime sleepiness to the point I couldn't drive. A sleep study revealed severe leg movement when I was sleeping only, I never noticed it. I was put on Mirapex 1mg (seems high after reading) but the drowsiness did not improve.

A couple months later and my primary care putting me on Adderall so I could function. I had another overnight study followed by a Multiple latent sleep study to check for narcolepsy which revealed 113 night time arousals and a sleep time of 7 which apparently means narcolepsy. Also the neurologist increased the Mirapex to 1.5 mg bedtime. Somehow I think if I stopped the Cymbalta everything would resolve.

Bonnie

Medical Reply

You do not have RLS but you do have PLMS (Periodic Limb Movements during Sleep) or leg kicks while asleep. Although most RLS patients have PLMS, the majority of PLMS patients do not have RLS.

In your case, the PLMS are most likely due to taking Cymbalta (as you have already surmised). Therefore stopping the Cymbalta (and perhaps changing to a drug like Topamax) may resolve the PLMS issue. However, it is not at all clear whether resolving or treating the PLMS is something that needs to be done in your case.

Even though the PLMS may cause arousals, they may not actually be causing you any physical (or other) problems. Most RLS specialists (who tend to be quite expert on PLMS) would not treat PLMS without more evidence that they are actually causing problems. They are most often a manifestation of other issues (like being on Cymbalta in your case) and treating them may be of no help (also as in your case).

Most of us RLS specialists would treat PLMS (on the few occasions that we feel that is necessary) with low doses of Mirapex (.125 mg to a maximum of .25 mg/day) and you are correct that you are currently on a massive dose of the drug.

The drugs of choice for your narcoleptic problem is Provigil or Nuvigil.

Sent: Friday, June 07, 2013 3:32 PM
Subject: Omeprazole and RLS.

I hope you can help me. I am now in my 60's and have had RLS nearly all my life. I am on ropinirole which does help. My doctor has prescribed Omeprazole for heartburn and much to my distress, it is making my RLS much worse. I have been up nearly all night and the ropinirole has not really helped.

I will have to see my doctor but am wondering if there is any other medication that I could suggest to him that would not aggravate my Legs ( and arms).

Sue M. in the UK.

Medical Reply

Omeprazole (Prilosec is the brand name in the USA) does not typically worsen RLS. There may be another factor causing this problem. However, there are many other heartburn medications available and most all of them should not worsen RLS so just ask your doctor for another one.

Sent: Friday, June 21, 2013 2:40 PM
Subject: Travel and RLS

My husband and I travel weekly by car 2 hours/one way. We stop at least once to stretch. This and cold seem to aggravate my RLS. I am on Requip 1mg. Any suggestions to help in late afternoon and evenings when we travel! 

Kelly C.

Medical Reply

You could take 1/2 (or a whole) of the Requip 1 mg about 1-2 hours before your car travel and that should work well. However, Our current goal is to keep the daily dose of Requip to a maximum of 1 mg per day so adding more (more so on a daily basis) might increase the risk of developing augmentation (a worsening of RLS from taking Mirapex or Requip).

Alternative therapy would be to take a tramadol tablet (25 or 50 mg) about 30-60 minutes before (1/2-1 of a Vicodin 5/500 would be the next choice if the tramadol is not helpful).

An alternative choice would be to change the Requip to the new Neupro patch which covers RLS symptoms around the clock and has less issues with augmentation.

Sent: Friday, June 21, 2013 5:36 PM
Subject: Midday Dosage

I am a 73 years old male in pretty good shape and quite active. I am currently taking .75 mg of ropinirole two to three hours before bedtime and getting a decent night's sleep, awaking to no RLS symptoms in the morning. I can lead a normal life, pretty much, but when I work hard out of doors on my ranch, sometimes I come in very needy of a nap or, at least, a chance to lie down and rest. Unfortunately, moderate RLS symptoms prevent me from relaxing and getting to nod off for a short nap.

I have no jerking nor spasms but only crawling, discomfiting symptoms in my legs that go away when I give up on the nap idea and find some chore(s) to do for the balance of the evening.

Since my Ropinirole dosage is fairly low, what would you think of taking some additional ropinirole prior to trying a nap, on occasion - and at what dosage? Absent any advice from you to the contrary, I would continue to take my .75 mg before bedtime.

Of course, I can live without naps but considering how hard I work occasionally, they would sure be nice if the ropinirole would work fast enough for me to actually take a nap after taking a midday dosage. For what it is worth, while my RLS is generally restricted to my legs, about 40% of the time it involves my arms and shoulders (if untreated with ropinirole).

R. Stephen D.

Medical Reply

If your RLS symptoms expanded to your arms only after you started ropinirole, then you may very likely be experiencing augmentation (worsening of RLS from taking a dopamine agonist like ropinirole to treat it). In addition, if you were able to take naps in the daytime before starting ropinirole and that problem has only appeared since taking ropinirole, then you most likely are having augmentation. In that case, increasing the daily intake of ropinirole would not be a good idea.

You might want to discuss changing to the Neupro patch which will treat RLS symptoms around the clock and has less issues with augmentation.

Sent: Sunday, June 23, 2013 4:03 PM
Subject: Ropinirole HCL ER 6mg tablet

I am an East Coaster (Maine) and I am looking for some more information on the ropinirole ER 6 mg tablet . I have been seeing a local neurologist (finally) and he has changed my OLD dosage of ropinirole 4 mg to the 12mg. (2 of the 6 mg tablets) ER tablets PLUS 100 mg of gabapentin. I am concerned about the large dosage when I am always reading that the largest dosage of ropinirole should be no more than 4mg.

Would you have any input into this issue?

Kathy H.

Medical Reply

You are correct to be concerned about your current dose of ropinirole. Although the FDA approved upper limit for ropinirole is 4 mg/day, I (and many other RLS experts) now believe that 1 mg per day is a better upper limit (and even that dose does not ensure that augmentation will not occur).

The fact that you need such a high dose of ropinirole already (in addition to gabapentin even though that dose is likely too low for most patients), indicates that you might already have developed augmentation from ropinirole and that increasing the dose of ropinirole only “adds fuel to the fire” providing temporary relief (months and sometimes even years) before you must further increase your dose.

The treatment at this point is somewhat more complicated but most of the RLS experts (not just a “local neurologist”) would know how to proceed with a major change in your medication.

Sent: Saturday, June 29, 2013 6:51 PM
Subject: RLS

Hi I am a doctor and I have restless leg syndrome, probably of a moderate degree. My mum has RLS and sure enough It started for me aged 15, and it was only intermittent. By the time I was at medical school, it was there every night, and most lectures.

Ropinirole got me through my training, and overall I think it is a good drug and would recommend it to others. I found it difficult to get the dose right, as I noticed if I didn't take enough id wake at 3am with bad aching in my legs, but the more I took, the worse my symptoms were in the evenings. eventually I 'maintained' on 0.75mg per night, and id wake at 5am every morning and have to get up.

If you ask me RLS is a horrible disorder. If I exercise too hard, that night will be terrible! my legs ache I thrash around like a mad man. I cant touch alcohol. If I have one beer, 20mins later I will have the symptoms come on, even if I am talking to a friend on a couch. I cannot sit still. I am tired everyday. I try and avoid coffee but that's hard for a doctor!

I had an operation a couple of years ago. I spent one night in hospital and it was the best night of my life! I must have had some opiate hanging around from the op, and my legs were... dead! Not one buzz, or crawl. Just normal legs. And I just lay there, perfectly still and enjoyed it. And I wondered if that was what lying in bed is like for everyone else?!

There's an aspect of RLS which interests me which id appreciate your comments. For people who have it mildly, removing stress can resolve symptoms. It is closely associated to anxiety/ depressive disorders. Is that cause or effect?


JR from NZ

Medical Reply

Similar to back pain, stress/anxiety can easily make RLS symptoms much worse. However, anxiety and depression are very common in RLS patients especially when treatment is not adequate. This can cause a viscous cycle of worsening RLS symptoms and depression/anxiety (especially when the patient gets antidepressant medications that further worsen RLS). Therefore, anxiety and stress can be both cause and effect.

It is clear from your description that you have developed augmentation from the ropinirole. It is not clear if you are still taking this medication but if you are, you should see if you can get off the dopamine agonist. There are many other ways to treat RLS and most all patients can achieve excellent relief of symptoms with proper care.

By the way, we no longer believe that caffeine worsens RLS but alcohol typically does.

Sent: Sunday, June 30, 2013 2:21 PM
Subject: Finally, something that works.

I have been troubled by restless legs for something like the last 50 years. On my next birthday I will be 92. I believe I have tried everything that has ever been suggested. From time to time I have had relief but it doesn't last very long. A number of the medicines caused hallucination. Here is what now works for me and I believe it will last.

I take one half mg of Requip at 8 AM. and again at 2 PM. I take 10 mg of hydrocodone morning, noon, and night. At bedtime I take a 2 mg pill of extended relief Requip +15 minutes in a hot spa (103°). I know it sounds a bit complicated but for the first time in memory it works.

I have kept careful records on what I take for the past five years. I encourage you to believe that there is help.

Dr. Robert M.

Medical Reply

Since you have found a treatment plan that works, you probably should stick with it. However, there is a very reasonable chance that the Requip is causing augmentation (worsening of your RLS) and you will require higher doses (which will then produce a need for even higher doses) of Requip or other medications.

We normally attempt to eliminate the Requip (or any other dopamine agonists) and then treat the RLS with other medications. That can be tricky and most often requires an RLS specialist.

The only other issue is that you are taking a lot of acetaminophen with the hydrocodone and since the acetaminophen does not help RLS, you are being exposed to a medication that can cause liver or kidney problems with time. We typically use the higher potency opioids (oxycodone, methadone) that do not contain acetaminophen.

There are other medications that can be helpful and under the care of most RLS specialists, almost all patients should end up being virtually RLS free.

Sent: Monday, July 01, 2013 12:01 PM
Subject: Buspar

In April my doctor started me on buspar for anxiety. We started at a very low dose because I have great sensitivity to medications. I am now taking 10 mg. twice a day. I am experiencing some increase in my WED and am wondering if the buspar is the cause. I have had other times when my WED has fluctuated so don't want to blame it on the buspar unnecessarily.

I am just wondering if this medication is one that could exacerbate the WED. A Google search hasn't helped me much. I see my doctor again next week and want to be able to give her informed information so any help you can give me regarding this would be helpful.

Sandra H.

Medical Reply

I have never heard of a patient’s RLS symptoms being worsened or triggered by Buspar and have many patients on the drug. Although anything is possible, it is very unlikely that your Buspar is the cause of your increased RLS symptoms.

Sent: Wednesday, July 03, 2013 7:16 PM
Subject: Mirapex

I have been on Mirapex for years now I think I have augmentation. I was on l MG I took half in the afternoon and the other at night. Now it does not work, After the evening pill I walk for hours, I have to see the doctor but I wonder if someone would tell me what medicine I should go on. Right know I cannot sit. I do not take medicine very good. I do not know what to do or if my GP doctor will know I would like some advice.

Lorraine P.

Medical Reply

Augmentation (and it does sound as if you have severe augmentation problems) requires the expertise of a doctor with advanced RLS knowledge. Most physicians (including sleep specialists and neurologists) may not know the proper treatment. It is more complicated that just adding or substituting a drug. You should seek out an RLS specialist otherwise you will continue to suffer.

Sent: Fri 7/5/2013 2:53 PM
Subject: Need help with RLS treatment.

I have been on both Mirapex and Requip (at different times) and have topped out at 0.5mg Mirapex and 1mg Requip. I experienced augmentation on the drugs and asked my GP doctor to switch me to Horizant. Unfortunately, he did not truly grasp the severity of coming of an dopamine agonist and refused to prescribe me any opioids for the transition period even after showing him your emails. Needless to say, the next several months were living hell. But once that settled, I still did not find any relief from Horizant, even at 1200mg.

I lost my insurance awhile back, and the price for Horizant was to much. So I decided to go to a Neurologist hoping they would understand better and see about trying tramadol out. When I mentioned this to the neurologist he acted like it was a heavy narcotic and is reserved for only the most severe cases. I could tell this guy wasn't the most knowledgeable as he mentioned Klonopin as another drug reserved for the most severe.

Anyway, I told him I did not want to go back on the dopamine agonist drugs because of augmentation. So he put me on 600mg gabapentin. I tried that for a few weeks to no avail and bumped it up to 900mg, still with no improvement. At today's follow up he insisted I go back on Mirapex and wrote me a prescription at 0.5mg. So obviously I need to find a new doctor, but what would you recommend the next course of treatment be. Thank you so very much for your time and guidance.

Taylor W.

Medical Reply

Gabapentin is similar to Horizant (since Horizant releases gabapentin but much more efficiently) so it would be expected that you would not respond to regular gabapentin. You need to see an RLS specialist, not a neurologist will extremely limited knowledge about treating RLS.

Tramadol may be helpful but typically most patients in your situation will need more potent opioids like oxycodone or methadone. Getting them may be difficult as most non-RLS specialists do not understand this issue.

Sent:  07/08/13
Subject: Changing to the Neupro patch?

I saw a neurologist today hopeful once again of finding someone to help me with my severe RLS. Although the doctor immediately informed me that she did not know much about RLS or the Neupro patch that I was requesting, she did prescribe the patch after studying it online while in the exam room with me. Even though my research led me to believe that this is the next step in my RLS treatment, I am not a doctor, and I am now concerned about my use of ropinirole while starting the Neupro patch. Perhaps there is no reason to be concerned but I was wondering if you have any advice on this as I was unable to find much information regarding this online.

Prior Meds:
Hydrocodone/Acet 5-500, 1 @ 2pm, 1 @ 8pm
Ropinirole .5 mg 1 @ noon, 1 @ 5pm, 4 @ bedtime. I was only able to take 1@ 5pm and 2 when I couldn't stand the pain any more and immediately fall asleep but my husband says my legs still jerk and come a foot off the bed. More than 1 mg and I can't function in the a.m.

Instructions from the doctor today on starting the Neupro patch (as copied from the doctor's instruction handout)
1) Please use 1mg patch between noon and 2pm
2) 2-3 days after starting rotigotine, please try to cut your hydrocodone dose in half
3) One week later, please try to stop hydrocodone completely or to reduce the afternoon dose of ropinirole to .25 mg
4) One week after that, please try to stop other daytime medicines.

This is the only reference I could find online about the use of both Neupro and ropinirole at the same time and I didn't understand it:
http://www.drugs.com/answers/restless-legs-syndrome-i-am-currently-on-neupro-388532.html

I did find there is a moderate drug interaction but again, unsure what this means.

Dee M.

Medical Reply

Your doctor's current plan to transition to Neupro is very unlikely to be successful. If your present dose of Requip is not helping you (especially if this is occurring after an initial period of relief) then you are suffering from augmentation. Changing over to Neupro in this condition has a very small chance of success (but I cannot say for sure that it will not work).

However, trying to cut down on the Vicodin with the Neupro at 1 mg would only let the RLS symptoms drive you crazy. It would likely take at least 2 mg (second week of treatment) or more likely 3 mg to be able to get off the Ropinirole and perhaps (small chance) not need the Vicodin.

There are no articles on how to transition from Requip to Neupro but most of us experts simply slowly decrease the Requip while increasing the Neupro (on a weekly basis). Neupro should generally be placed on the skin in the morning. The article on the internet is of no relevance to RLS (or anything else).

You may need to seek out a physician who is more knowledgeable on RLS as your current situation is beyond your expertise combined with with that of a non-experienced physician.

Sent: Saturday, July 20, 2013 3:38 AM
Subject: RLS Help

I was wondering if you could help me? I have had RLS/WEB for the past ten years. It affects my legs, my shoulders, and genitals. I am currently on 10mg of ropinirole/day. In the past 4 months I have gone from 6mg/day to 10mg/day. It appears that I am augmenting? My symptoms start earlier in the day, are more intensified, and causes me to wake up earlier. I just set up an appointment with a neurologist. I have never had one because I just self medicate (bad I know). I have never had a sleep study, had iron/ferritin levels checked, etc.

My brother is on 16mg ropinirole/day. He had Doctor Packard for his neurologist and she was ultimately unable to help him. She tried gabapentin and Neurontin which didn’t help. She never put him on an opioid, which from my understanding, would have helped him. I tried to get him to tell her but he didn’t. Everything I’ve read about her says she is an excellent neurologist and supposedly she is very accommodating. He just never said anything to her.

I have two questions I was hoping you could help me with.

1) How do I go about fixing this? I can’t keep upping my medication dose like this. I would like to get off of it.
2) Whatever your suggested treatment may be, how do I present it to her without offending her? The last thing I want to do is alienate a new doctor and set the tone for a bad relationship.
Any help would be greatly appreciated. Looking forward to your feedback.

Bob

Medical Reply

Your story is very compatible with augmentation and you are correct about the treatment. The issue is that most doctors (including neurologists who are amongst the better doctors who treat RLS) do not know that much about this issue and especially how to treat it. Treating augmentation requires both expertise/knowledge of the problem and experience treating many patients as the treatment may vary widely from patient to patient.

You can give your doctor some up to date articles on treatment (see my attached recent article and even better, check out my book) and hope that she learns enough to treat you. I would not worry about offending her as she either knows that she is deficient in treatment of RLS (and will thus be amenable to improving) or feels that she is doing a good job (in which case nothing will sway her to change). You may have to consider finding a doctor who is truly an expert in treating tough RLS cases with augmentation. Otherwise, it is virtually guaranteed that you will continue to worsen.

Sent: Monday, July 22, 2013 9:25 PM
Subject: Restless legs syndrome

I am 53 years old and have MS and severe RLS which I was first aware of when pregnant with my second child, although now realize I have had it in a milder form since childhood (always unable to keep still). I take up to 3 mg a night of Ropinirole (Requip) which keeps it in check (although I take it in 0.5 mg doses throughout the night - every 2 hours).

I have had augmentation and rebound but it has been the only medication that allows me to get some sleep. Recently I have been suffering from very bad burning pain in my lower right leg which my MS neurologist puts down to MS neuropathic pain ( although reading this brilliant website, I suspect is related to the RLS). I have been prescribed amitriptyline for this pain (20 mg before bed). It has made my RLS much worse so I think I should stop taking it.

I am writing this at 05.20 am having been awake with appalling RLS since 4.a.m. My husband and I stopped sharing a room 15 years ago because I would keep him awake all night. I can sleep over a 12 hour period as I am retired due to the MS, but he needs a good night's sleep. I have read here that the amitriptyline does indeed make RLS worse so it has been extremely helpful.

Julie G.
London, UK

Medical Reply

You are correct that amitriptyline worsens RLS. A reasonable alternative for neuropathic pain would be gabapentin (or better yet would be Lyrica but that might be very expensive). The burning pain is more likely to be related to MS unless it is associated with an urge to move and made better with movement.

There are alternatives to Requip but they include opioids (which are difficult for doctors to prescribe in the UK) and Lyrica.

Sent: Saturday, July 20, 2013 3:25 PM
Subject: Questions about RLS treatment

I have been on medication for RLS for over 30 years. When I started, I only had the problem when I was over-tired. Then after a few years, I had the symptoms every night. As the years went on it continued to get worse, so my dosage of Mirapex was increased. About 15 years ago I started having a terrible problem with compulsive eating and gambling. My doctor gave me a copy of some articles from the Mayo clinic on studies that showed in some cases, patients on extended use of Mirapex developed these compulsive behaviors.

The gambling problem was destroying my life and marriage, so we changed my prescription to Requip, which had just come on the market. Unfortunately, the Requip did not help my symptoms and I just about went postal. So we decided to use both together, which has been working for me ever since. However, my dosage has been increased because I have the symptoms all the time (not just at night). I am suffering terribly with obsessive eating and gambling problems and have just recently had to file bankruptcy. The gambling is so completely out of control, and if my husband finds out, I will not have a marriage anymore.

I would like to find a physician who really knows and understands these issues, but I am not sure what type of doctor I need to see. How can I locate a doctor in my area that really knows this problem and how to treat it. I am becoming so completely depressed, and know that I need help quickly. My life is really a shambles right now. Can you suggest a way for me to locate the right doctor for this problem?

Desperate & Depressed
Jeanne L, Washington

Medical Reply

Finding a doctor with adequate expertise to treat difficult RLS cases such as yours (and especially one who can treat augmentation which is what you also are experiencing) can be very difficult. The best way is to call sleep specialists and neurologists (especially movement disorder specialists) to see if they claim to be more expert treating difficult RLS cases. Many offices will say that they treat these cases but the best way to figure it out is by finding out how many RLS cases they see (most receptionists should have a good idea). Even with this type of screening, it is likely that you may not find a doctor to properly take care of your problem.

Also check your local support groups and the internet forums as they often know who is good in your area. Unfortunately, for the real difficult cases, many have to travel to get relief (which is why I see so many out of state patients). With proper treatment, your life should get back completely to normal.

Sent: Tuesday, July 23, 2013 2:22 PM
Subject: RLS

I have had RLS for as long as I can remember (I am 25 now). Over the past year, it has become intolerable. I have severe lupus SLE, and my pain has been treated with fentanyl, hydromorphone, and oxycodone from 2009-2013. I was finally able to get off of the hydromorphone in October '12 and fentanyl this April (it took me 6 months). What I thought was severe withdrawal was actually most likely an increase of RLS symptoms that the opiates were treating. I was started on Requip, but have had only some relief from it. It will work for a few weeks, but then it goes back to being horrible and I have to increase my dose.

My symptoms are present pretty much 24/7. They range from feeling like bugs are crawling under my skin everywhere, causing uncontrollable kicking and contortions, to extreme, deep, burning muscle and bone pain, especially in my legs and feet. At night, I usually need 5-10mg of Percocet, which relieves the uncontrollable movement and turns on/up the pain, which I much prefer. I cannot sleep until usually around 3-4am (possibly because of the 7mg of prednisone I'm on in combination with the pain/contortions). By 6-7am, the symptoms return full force.

Throughout the day, I need 1-2 Percocet to control the urge to move. I am on 2.5mg of Requip. I have also been on 1200mg of Neurontin for 3 years after getting shingles and finding that it worked for generalized pain, but it does nothing for my RLS. I find that Ambien and alcohol make my symptoms worse, and I'm not sure, but caffeine might too. I was on folic acid for years because I was on methotrexate, but went off both in February. I've heard that folic acid can help RLS, so I might go back on that (after researching it, it seems safe to be on, since it's water soluble and won't build up in the system. Please correct me if I'm wrong. I was on 1mg and will likely restart that soon to see if it helps).

My mother and father both have symptoms. My mother's symptoms are relieved by exercise, my father's are relieved by sleep. I cannot exercise because of a heart condition that causes my heart rate to increase to 160 bpm at rest (I'm getting an ablation in a couple of weeks to fix it, so hopefully I will be able to get some exercise soon), and I cannot sleep because of the symptoms. I have nerve damage and white matter lesions from lupus that have caused pain and headaches among other symptoms, so sometimes it's hard to distinguish whether the pain is from RLS or the nerve/brain damage.

Since my lupus is currently in clinical remission, my doctors do not want to prescribe the narcotics anymore. They are the only thing that gets me through the day. What dose can Requip be increased to, or are there any other medications that can help that I am not currently on? Doctors have been hesitant to prescribe me benzodiazepines in the past (possibly because of the consequence of combining them with the many other CNS depressants I was on) and I'm afraid to ask for them, so those are out. I feel like I'm going insane; it's absolute torture and I'm really scared for what will happen when they take me off of the opiates.

Side note: The only non-narcotic/medication relief I get is from lying on my stomach and sitting up on my elbows. I often rest in this position at home while I wait for the Percocet to work.

"Kicking" RLS
Chelsea S.

Medical Reply

You clearly have a tough case of RLS which is complicated by your lupus.

Folic acid does not help RLS but would not be harmful to take.

The problem with increasing your Requip is that it most likely is causing augmentation (a worsening of your RLS from taking a dopamine drug) and as you increase the dose (which will provide temporary relief) you will ultimately increase the augmentation/worsening of RLS symptoms. At this point, it might be best to be treated with low dose opioids (methadone is usually better than oxycodone but it may be difficult to persuade your doctors to prescribe it). You may have to see an RLS specialist in order to get an opioid prescription.

Benzodiazepines do not typically help RLS but rather help RLS patient fall asleep (so I would not worry about not receiving them).

A Reply from Chelsea

Sent: Tuesday, July 23, 2013 10:15 PM
Subject: Re: RLS

Thanks for the advice. I actually see my pain specialist tomorrow. She currently has me on ketamine every few months for pain, and I'm not sure how methadone would interact with that and the versed they use during the infusions. If it could treat both pain and RLS with the methadone, then maybe I wouldn't need the ketamine. We'll see. I'll also consult my neurologist, who has recommended taking opiates in addition to the Requip, when necessary. I just don't think she realizes that "if necessary" is every day all day!

Chelsea

Medical Reply

Part of the issue you should discuss is getting off the Requip completely as that is the treatment for augmentation. Doctors unfamiliar with augmentation will not know how to accomplish that transition. 

Sent: Tuesday, July 23, 2013 6:59 PM
Subject: Please help my husband

He has been diagnosed with trigeminal Neuralgia, so he was given 21 prednisone tablets and tegretol. The second night he woke out of dead sleep with a Charlie horse, he is now suffering severe RLS! It is SOOOO extreme that he slept approximately 10 hours in 11 days. We went to the ER and sodium was a little low. He has been taking Xanax for years for anxiety.

Nothing is working to help him sleep. His only relief has come about 6am when his legs relax and he can sleep the day away. He has just started a new job, and so far they are being patient, but I'm sure...not much longer. He had more blood work done today and everything came back normal, kind of a disappointment, as we were hoping for a diagnosis and a remedy!

It is just so coincidental this started after the prednisone and tegretol, any ideas? Please help, he CAN NOT lose this job, he needs some sleep, and I want my husband and snuggle bunny back!

Stacy G.

Medical Reply

There is no relationship between prednisone and RLS (I give prednisone to my RLS patients all the time without any issues). Tegretol also does not worsen RLS and may even help it at times.

Your husband need to see an RLS specialist to receive a proper diagnosis (with his multiple problems it is not completely clear that he does have RLS) and then to receive appropriate therapy (which should be quite easy for a specialist once the diagnosis has been established).

DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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

To receive a response to your email letter, please use complete sentences with correct spelling (use your spellchecker), punctuation and grammar. Avoid abbreviations (do not use Dr or doc instead of doctor or yrs instead of years), incomplete words and do not use ALL CAPS or no capitals (like i instead of I or for the first word of a sentence). Email letters that do not follow these rules will not be read and will not receive a response.

   Click to go to the RLS Homepage,  RLS Treatment Page

Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 104.
http://www.rlshelp.org/rlscomp104.htm
This web site was last modified on Sunday, August 18, 2013.
Cartoon above was created and drawn by Robert Van Den Berghe.
All material on this web site is Copyright © by the Southern California RLS Support Group, 2011.

   Top of Page