Patient letters on RLS symptoms and remedies- Page 98

 

Kicking RLS/PLMD Patient



Sent: Thursday, September 15, 2011 6:04 AM
Subject: Antihistamines and RLS?

A new problem for me. I believe I have an infected bug bite. I'm going to see the doctor this morning. I looked up the problem on the internet which said they use antihistamines to cure this. I read your section about antihistamines on your website.

If there any antihistamine at all I could use if that is what the doctor orders?

Dale K.

Medical Reply

The non-sedating antihistamines such as Claritin, Clarinex, Allegra rarely if ever bother RLS.


Sent: Thursday, September 22, 2011 5:44 PM
Subject: Proteinuria and Mirapex weaning

I have been diagnosed with proteinuria with none of the common causes and normal renal function tests. I am an ARNP and have been doing a lot of research on this. I notice that Mirapex can cause proteinuria. My questions are: Do you know that this is one of the side effects of Mirapex and if so, is it reversible when the drug is stopped.?

I would like to get off Mirapex. I take .125 mg daily. I have tried unsuccessfully to wean myself off. My RLS becomes unbearable and spreads to my arms and the rest of my body. Do you have any suggestions to help me successfully wean myself off this medication. I have an appointment with my Neurologist next week.

Barbara M., ARNP-C

Medical Reply

Although proteinuria is listed as one of the potential side effects of Mirapex, I have never seen a case of this problem despite prescribing hundreds of this medication. It is certainly possible that the Mirapex is the cause of this kidney problem but it still might be due to something else (which may be very difficult to find) but an easy way to determine this issue would be to stop Mirapex and see if the protein goes away in the urine.

You are finding out why we experts are writing fewer prescriptions of Mirapex (and the other dopamine agonist, Requip) as once started, it may be very difficult for many patients to stop the medication. In patients such as yourself, stopping the dopamine drug sets off a reaction where the dopamine receptor goes a little ďcrazyĒ and overreacts causing a marked worsening of RLS symptoms. If you stop the Mirapex, you may continue with this ďRLS in hyperdriveĒ for several weeks or even a couple of months. After that period, it would likely go back to where it was before you started Mirapex (assuming you could survive that horrible period).

We typically use potent opioids (methadone, oxycodone) to get patients off dopamine agonists. We then add other drugs like Horizant (no problems like dopamine agonists with this class of drugs) so that we can reduce or eliminate the opioids. As simple as this may sound, most doctors and specialists will have trouble doing the above. Just substituting Horizant (or other non-dopamine drugs) will not adequately cover the withdrawal from Mirapex.


Sent: Saturday, September 24, 2011 10:21 PM
Subject: RLS at night

I have taken Mirapex .50 at night for RLS, along with Tramadol .25. That was not completely eliminating my RLS, so my doctor switched me to gabapentin 300 mg. I have taken it for two nights now, and the RLS is severely increased to the point that I simply cannot sleep. Why is the RLS so bad, when the gabapentin is supposed to relieve RLS. I would very much appreciate an answer as to what medication will help me.

Medical Reply

Since we do not know why gabapentin helps RLS (nor do we know why any of the other medications work for RLS), it is impossible to speculate why you had such a paradoxical response to the drug. I have seen this happen with all classes of RLS drugs and it remains a very puzzling phenomenon that thankfully occurs only rarely.

You may still want to try the new RLS drug Horizant even though it turn into gabapentin in the body as it has very different pharmacokinetics than regular gabapentin. Other anticonvulsants such as Lyrica are also worth consideration.

If those donít work, then opioids may be reasonable.


Sent: Sunday, September 25, 2011 4:51 AM
Subject: RLS treatments

I have had RLS for many years. I have tried Mirapex and Requip which helped the RLS but I could not sleep AT ALL! Recently my doctor put me on Elavil. The side effects are absolutely terrible. Not only cannot I not sleep but the Elavil made the RLS a THOUSAND TIMES worse! My doctor told me to just keep taking the Elavil! Needless to say I did not. I cannot even function when taking the Elavil.

Please tell me something, anything I can take to reduce the RLS symptoms and sleep! I am really desperate!

Michael K.

Medical Reply

You should download our RLS medical alert card which lists drugs like Elavil (and most all other antidepressant drugs) as medications to be avoided as they typically worsen RLS. You should keep this card with you and give one to all your doctors so that they will not be tempted to prescribe medications that will end up harming you.

Ask your doctor about starting the new RLS drug, Horizant. It has an excellent chance of helping your problem and your sleep.


Sent: Sunday, September 25, 2011 7:29 PM
Subject: Trouble finding relief for RLS

I am so hoping you can help me. I have had RLS for years and in the last year it has gotten increasingly bad. I am on Requip now (.5 mg) and I really don't feel relief. I dislike this medication because I get really nauseated. My doctor suggested I take 1 mg to help the discomfort but when I have done that I vomit. I have researched endlessly and have tried, heat, cool packs, exercises and stretching, Advil, a better diet, cutting out alcohol, caffeine, etc.

I am at my wits end and very depressed as I am 46 and miserable at this point because I cannot find any relief! I am on Zoloft (100 mg) for mild depression, HRT, and Advair for asthma. Can this be hindering my legs? Keep in mind I am 130 pounds and very active - I cannot find a solution! Can you offer some guidance??

Liz C.

Medical Reply

First you should know that almost all RLS patients can get excellent relief from RLS with proper therapy. However, it is often very hard to find a doctor that knows how to prescribe that proper therapy.

Zoloft worsens RLS and may be part of your problem (you can download a copy of our medical alert card that contains a list of medications that worsen RLS). HRT may also worsen RLS.

Requip may be better tolerated if taken with food. However, this delays the onset by about 1 hour. You may do better with the new drug Horizant (or Lyrica if you have problems with that drug).


Sent: Monday, September 26, 2011 7:50 AM
Subject: RLS and dairy

I have been suffering from RLS in the last 10 years and in the last 3 it has gotten worse. On September 1st I was watching a CNN interview on President Bill Clinton regarding his new Vegan lifestyle. I have high cholesterol so I decided to become a vegan myself with an absolute commitment to not eating any foods from animal origin, that meant zero dairy or meat.
After three weeks I noticed that my RLS disappeared completely!!

This was a great surprise because I wasn't expecting it, also my rosacea starting to disappear as well. I was just looking to reduce my cholesterol and suddenly my health started to improve dramatically. There's no way I am going back to eat dairy or meat no matter how much I crave it. My sleep and my health have a higher priority. Thanks Bill Clinton!!

Medical Reply

Nice to hear that changing your diet helped your RLS. Not many other have shared that luck.


Sent: Tuesday, September 27, 2011 8:11 PM
Subject: Insomnia with Horizant

I have been on 1200 mg of Horizant since it came out. At one point, I went 4 days straight without ever falling asleep. Sometimes it takes me hours to fall asleep, and I don't stay asleep very long. It has helped with the restless legs syndrome. I was hoping to get off Vicodin and Klonopin. Mirapex, others like it, caused problems including insomnia, as well. OxyContin and methadone caused severe crying jags and problems concentrating. Horizant seemed like my last hope.

I have even tried taking it earlier than 5:00 p.m., has not really helped. Have you heard of this problem with Horizant? My doctor says it's not due to the Horizant. That all his other patients report better sleep. But I know it is a new medicine, maybe not a lot of data out, yet?

Lynn

Medical Reply

Although sedation/sleepiness is the most common side effect (benefit for those who canít sleep) with Horizant there will be some patients with paradoxical responses. I have already seen 2 similar patients with insomnia from Horizant but I prescribe more of the drug than almost anyone else (due to the large size of my RLS practice and the difficult cases that I see).

There are still lots of other drugs to try like Lyrica and other anticonvulsants before you give up.

A Reply from Lynn

Sent: Wednesday, September 28, 2011 5:22 AM
Subject: Re: Insomnia with Horizant

What doses of Horizant have you tried on your patients?

I have pretty much tried everything, Lyrica, other Parkinson's medicines, gabapentin (On it for a while, then had side effects). Any other anticonvulsants besides gabapentin? My case has been complicated as I have had RLS many years. Have been told to 'live with it" or go to Johns Hopkins or Mayo Clinic, which my doctor knows I cannot do.

I did try wine (one small glass, I don't drink) when on a trip to visit a friend, was able to decrease either the Vicodin or the Klonopin, cannot remember. Made me wonder about stress/anxiety making it worse.

Lynn

Medical Reply

Horizant is only approved by the FDA for once daily use at the dose of 600 mg. However, studies have shown that some patients will do better with doses of 1200 mg or even 1800 mg. I do use these doses at times and even use the medication twice daily for patients with RLS symptoms that start in the morning (or even 24/7).

There are several other anticonvulsants that can be used. If those do not work then the opioids are a very reasonable and effective treatment for your RLS. Most all patients, even those with very severe RLS can get excellent relief with proper treatment (which can often be hard to find as most doctors are not that familiar with treating the more difficult cases).


Sent: Tuesday, September 27, 2011 2:12 PM
Subject: Restless Leg Syndrome

I'm a 16 year-old high school student and I have ADD, inattentive type. (Studies show that 1 in 4 children with ADD suffer from RLS.) The earliest memories I have with RLS was from when I was nine. I remember waking up in the night complaining about my legs hurting all of the type and my mom told me it was just growing pains. My mom is a nurse so I didn't say anything else even though I never thought it was growing pains. Whenever I slept with my mom she always complained about me moving too much.

My RLS started to get worse when I started high school and effected my work. By this past summer (2011) it got so bad that sometimes I wouldn't sleep at all. I told my psychologist and she recommended seeing a specific doctor that was just for sleep. The next day he diagnosed me with RLS. This was all happening right before school started this year and I am currently on a prescription medication that I need to take30 minutes before I sleep. My work this year has already improved dramatically. Now instead of having a B- as my highest grade I have straight A's.

Sofia

Medical Reply

Great to hear that you are doing so well with a proper diagnosis and treatment.

The 2 most common pills used for RLS are Requip (ropinirole) and Mirapex (pramipexole). Most patients find that they take about 45 minutes to 90 minutes to kick in but if it works for you 30 minutes before bedtime then that is obviously fine.


Sent: Wednesday, September 28, 2011 12:56 PM
Subject: New symptom after having RLS most of my life

I have RLS since childhood but was diagnosed in 1999 and have been on gabapentin (600-1200mg) ever since, with good results. I usually take 600 mg but if I have breakthroughs I up the dose to 1200 mg for a week or so. I just got home from a different neurologist. My new symptoms...numb, cold and achy lower legs.. mainly in the evenings but NOT after I go to bed.

I found out NOTHING..I am to go back in 2 weeks after seeing if my legs really ARE cold to the touch and can I feel them. Also need my husband to check to see if they're cold or if I can feel his touch. He wouldn't address anything else or just put me off. He DID listen when I told him I had started a different blood pressure medicine (amlodipine, 5mg) and he'll let the Dr. know his thoughts on that. He seems to think it's somehow related to my Restless Leg Syndrome and it's progressed. I could try a 2nd pill (gabapentin) in the afternoon and then my regular one at bedtime.

Julie S.

Medical Reply

I know you don't probably know anything about vulvodynia but I had a biopsy a few weeks ago and it just came back as chronic inflammation. The burning pain there has been almost a year and a half. Think of it as a torch between your legs. Anyway my woman's specialist suggested it could be the pudendal Nerve. The Dr. wouldn't ever address this.

In your opinion could this numb and cold, sometimes some achy feelings be related to my RLS?


Sent: Friday, September 30, 2011 1:39 PM
Subject: RLS and circulation treatment?

Since my RLS is getting so bad, and the medications I've been taking aren't working much anymore (even Vicodin), I wonder about those leg compressors they use in hospitals to prevent blood clots. Would they work for RLS? Also, in the last Nightwalkers, someone from another country wrote in about what she called a "circulation booster" machine that sends electrical pulses up the legs. Do you know what that is, and if so, would it work?

Also, do you think avoiding all additives in food could really work?

Irene O.

Medical Reply

There have been studies with sequential compression devices used for congestive heart failure (somewhat different than the leg compression devices used for preventing clots) may help RLS. However, the studies are divided with some showing benefit not demonstrated by others. I know nothing about the ďcirculation boosterĒ machine nor would I recommend it.

Some patients do find that various foods (typically refined carbohydrates) worsen their RLS but the only way to determine that in any individual is by trial and error.


Sent: Friday, September 30, 2011 9:15 PM
Subject: Treatment query

I have RLS 24/7, with lots of pain. At present I am on Mirapex 0.7 mg twice daily. I tried Requip first but had a very bad reaction, mood swings, anger, tears just felt out of control so I came of it. Then I had gabapentin, 300 mg twice a day. This did help a little with the pain but after having an an EMG which was normal the doctor stopped it after two weeks and changed to the Mirapex. I had terrible nausea for just over a week but that has now settled. I am also on Xanax .25 mg at night. The Xanax does help me drop off to sleep most nights, but after a few hrs the pain wakes me. At times I have been so exhausted with no sleep for days and constant pain.

I wonder why I have so much pain and also if the Mirapex should be helping more with that by now. I still have the urge to move my legs although not quite as bad as it was and the burning/crawling feeling has eased a little. Can the dose of Mirapex be increased and would that help I wonder? I canít help but feel that maybe the Gabapentin wasnít given enough time to work or was the result of the EMG an indication that it was not the right medicine?

Do you think a painkiller alongside the Mirapex would help me? I know you can not diagnose this without really seeing me but as I do not live in the USA that is impossible.

Debbie W.

Medical Reply

You Mirapex dose of .7 mg twice daily is already very high and I would generally recommend to anyone not to increase it. Currently (this was somewhat different even in the recent past), most RLS experts try to keep the daily dose at a maximum of .25 mg (and you are clearly already way over that upper limit).

Gabapentin is a very appropriate drug for painful RLS or RLS that is associated with a painful neuropathy. However, this drug is not well absorbed and blood levels may be very erratic. Here is the USA we have a new form of gabapentin (called Horizant) which solves that problem and it may be available elsewhere in the near future. Lyrica (pregabalin) is actually a much better choice (until Horizant becomes available in your area). The EMG results are usually normal in RLS and therefore does not typically help with therapy decisions.

Painkillers (opioids) work very well for RLS and the pain associated with it. They are very safe and effective when used in low doses and monitored appropriately by your doctor.

A Reply from Debbie

Sent: Sunday, October 16, 2011 2:04 AM
Subject: Re: Treatment query

 The neurologist I see here in Romania is away at present and I have a question I wondered if you can help again. The Mirapex is obviously not working and so I would like to come off it but not sure how to do that. As I will need some more soon and they are very expensive here I want to stop them as soon as possible. Can you help?

Also, is a high level of pain 24/7 normal with RLS or do you think it's worth asking to have this investigated? I feel there may be something lurking in the background alongside the RLS that is contributing to the pain.

Debbie W.

Medical Reply

About 20% of RLS patients have pain associated with their symptoms. The reason for this is not at all understood. Drugs like gabapentin and Lyrica do help the pain associated with RLS (if an adequate dose can be tolerated).

Even though the Mirapex is not helping much, stopping it may markedly worsen your RLS for several weeks (you can stop it and see if this is correct and if you have not problems then just stay off the drug). Slowly tapering the drug may help but you may still notice very significant worsening of your RLS as you decrease the dose. We typically add a potent opioid (oxycodone, methadone) to cover the period of worsening from withdrawal of the Mirapex.


Sent: Wednesday, October 05, 2011 11:26 PM
Subject: Levodopa for RLS?

I have RLS bad, I get it throughout my body, pain seems to trigger it, as does the slightest movement or breeze that happens by me at night. I get it during the day. I too like many of the writers on this site have become so exhausted that I find my memory is often challenged, sleep deprivation makes it hard to find words at times during the day.

My question for you is I'm taking Levodopa 100/25, but one pill has lost it's effect and I've begun pairing it with Tylenol 3, which does work very nicely, but I'm scared about what it might be doing to me. I have upped my dose of Levodopa to 1 and 1/2 pills at night, sometimes it works, but most nights I'm still walking like a zombie to try to exhaust my nerves or muscles. I was taking Ezetrol for cholesterol, but have taken myself off it as it was exacerbating muscle tension and RLS in my legs.

I have also discovered that Levedopa's side effects are known to cause back and leg ache, numbness, difficulty urinating, hot flushes and the list goes on, most of which I have. So I've been trying to avoid using Levodopa. Sleep time has become a time of daunting stress. I also have peripheral neuropathy and diabetes. Can you suggest a treatment?

Sharon B.

Medical Reply

Levodopa should no longer be used for daily RLS as it causes augmentation in almost all users. The augmentation is a worsening of RLS symptoms (occurring earlier in day, more intense, requiring higher doses of medication that helps for only a short while, may extend to other body parts) similar to what you are experiencing. The treatment for augmentation is to stop the dopamine drug (Levodopa) and substitute other ones. The Tylenol #3 works reasonably well but more potent opioids (without Tylenol as this drug does not help RLS) are usually necessary for controlling the first few weeks off Levodopa (when stopped, RLS symptoms will markedly increase for a few weeks).

Drugs like Lyrica (pregabalin) or gabapentin also help RLS symptoms and are also useful for treating neuropathy symptoms. With proper treatment (often hard to find), your RLS should be controlled over 95% of the time so that you should not have to suffer.

Ezetrol (called Zetia here in the USA) has not been known so far to have any effect on RLS.


Sent: Tuesday, October 18, 2011 2:01 PM
Subject: Post knee replacement surgery RLS worse

I have had RLS for about 12 years, and have been taking 1.5 mg Mirapex and 5 mg hydrocodone before bedtime for about 1 year (before that, just Mirapex was enough) and it has been pretty effective. Eight weeks ago I had a total knee replacement. I am doing well, only a little discomfort, not much, and am doing physical therapy and other exercises to strengthen my leg and promote movement.

I was on large doses of hydrocodone in the hospital and afterwards for a while to manage the pain. I have managed to reduce the hydrocodone to 7.5 mg at night only, but can't get down to the original 5 mg, as much as I try. In addition, I am now experiencing augmentation, with RLS symptoms starting even in the early afternoon! I can't rest or even relax, as that is when it starts.

Also, the restless feeling is in my arms and even my torso at times. You have in the past suggested methadone to me, but I still feel worried about taking that strong a drug. Would switching to one of the new drugs you have mentioned help?

Gyana

Medical Reply

You are clearly developing problems with severe augmentation. They were likely starting before your surgery and it is likely that the surgery somehow triggered this increase in the worsening RLS/augmentation problem (this is actually not a too uncommon problem).

Treating augmentation is a more difficult issue and takes lots of expertise (that most doctors do not have). It usually takes more potent opioids (you can use hydrocodone but you will have to increase it to much higher doses and be exposed to Tylenol which does not help RLS) and getting off the Mirapex completely. Once you are off Mirapex, adding a drug like Horizant may be helpful to reduce/eliminate the opioids.


Sent: Monday, October 24, 2011 4:56 PM
Subject: PLMD (Periodic Limb Movement Disorder)

Iíve been reading online about PLMD and found your website very helpful. I am a 60yr old male and have been fighting mild PLMD for a few years. My doctor prescribed Halcion .25 mg (which I cut into ľ tablet) and take that Ĺ hour before bedtime. Iíve had moderate success with it. Iím concerned about dependency and read on your website that I should stop Halcion for 2 nights every 2 weeks. The same doctor said maybe I could try carbidopa 25 mg by itself (without levodopa).

I had my pharmacy compound it for me. I couldnít find anywhere on your treatment page about carbidopa by itself. Would the side-effects be the same (or as severe) as the combination of the 2? Should I try it on those nights when Iím off the Halcion or wait and try the carbidopa by itself? My doctor wasnít sure. Any suggestions?

I know you donít have my chart but Iím looking for general guidelines.

Joel J.

Medical Reply

This is a much more complicated issue than it appears on the surface. There is great controversy about treating PLM as many specialists (more than 50%) believe that they are a reaction to another problem rather than a problem in itself. Before giving advice, I would have to see your sleep study and know much more about your case (which is beyond the scope of this website/email service).

Levodopa does not work well by itself and taking it at all might even provoke RLS (if you donít already have that already). Again, this whole issue is quite complicated and you likely should seek higher level help (like a sleep specialist).


Sent: Tuesday, November 01, 2011 3:25 AM
Subject: New RLS symptoms? 

I have begun experiencing a new pain/sensation in my leg and wonder if it is related to RLS, especially since the sensation usually happens  at the same time as my usual RLS symptoms.  It feels like a burning tingling sensation and my leg (a little above and below the knee) feels somewhat numb as well.  While I can have RLS symptoms in both legs, and even in my arms on occasion, this particular symptom occurs in my left leg only.  I currently take 15 mg of Oxycodone and 600 mg of Neurontin for RLS. 

Jim D.

Medical Reply

RLS symptoms can often occur in only one leg or arm (and even alternate between them). The way to differentiate RLS symptoms from others (such as neuropathic pain) is if the discomforting sensation comes only at rest and goes away with walking (just like your other RLS symptoms), then it is caused by the RLS. If not, look for other reasons.


Sent: Wednesday, November 02, 2011 12:55 AM
Subject: I need an RLS doctor?

I have had restless leg syndrome for many years. My doctors insists on using Mirapex or Requip, which do not work and make me extremely sick. I have found, after using Tramadol for body pain due to Fibromyalgia, that it is a wonder drug fro RLS. I only have to take 50 to 100 mg a night and I sleep like a baby.

I do not understand why doctors are so adverse to prescribing something that works and would rather I take a drug that has just as many side effects and doesn't control RLS. Tramadol improves the quality of my life and it terrifies me to think I will not be able to find a doctor who will continue to prescribe it.

Peggy L.

Medical Reply

Most doctors are not that well informed about treating RLS and many will only feel comfortable using the FDA approved drugs (which include Mirapex, Requip and the new Horizant which they most likely have not yet heard about). You might get your doctor more familiar with using tramadol by getting him a copy of my book for doctors,  Clinical Management of Restless Legs Syndrome which might help him prescribe the drug for you. However, since most doctors are very busy and may not have the time or inclination to read the book (or even the short area on this topic), it may be better to get a referral to an RLS specialist (typically a movement disorder neurologist or sleep specialist who does a lot of RLS Ė you have to call their office to ascertain this issue).


Sent: Wednesday, November 02, 2011 6:52 AM
Subject: Mirapex and Tramadol?

I have taken Mirapex for years for my restless legs but still would have trouble. Recently I was given Tramadol for pain and I noticed my restless legs were under control. However I am slightly nauseated and have no appetite. Is it because of the Mirapex and Tramadol together?

Gloria S.

Medical Reply

Either can cause nausea. You might want to try tramadol alone (hold the Mirapex for one day) and see if it causes nausea by itself.


Sent: Thursday, November 03, 2011 9:14 PM
Subject: What has helped my RLS

I have had RLS for about 20 years and as time went by it got worst. I missed work because I could not sleep at night. I talked to my Dr. about medication and she would not give it to me because of the side effects. I found a blog and they talked about RLS and what they did to help. Anyways to make a long story short. I was driving home from work and on the radio they were talking about RLS and they said Iron would help.

Between the RLS blog and the radio show I am now taking 250 mg of Magnesium and 28 mg of Iron. I take this in the middle of the after noon I also quit smoking and watch my caffeine. And it has really helped me a lot. I am now sleeping at night. Some nights my legs get to doing their thing and I get up and do this exercise, I sit on a chair and lift my leg up and down until I canít lift it anymore. Then I do that to the other leg. I donít know if this will anyone else but I had to just put it out there and hope that someone else will be helped by it.

Susie C.

Medical Reply

Thanks for your info on what helped your RLS.

It is hard to say which of the several things that you have changed recently have helped you. Iron often does help but you should have this monitored by your doctor as iron overload may occur.


Sent: Monday, November 07, 2011 6:02 AM
Subject: Requip and Neuropathy

I am 47 years old, have been on Requip for 5 years now, and I am doing fine at 1.5 mg. However, it does make me sleepy and a little nauseated, so I take it at bedtime. Since my legs start to give me problems about 7 or 8 oíclock every evening, I usually have to walk out on any evening event or activity I am attending. My husband and I want to find out if there is a way to adjust the dose, or adjust the timing of it for evening activities. I have experimented a little, taking a .5 mg dose early in the evening, but it did not help or make any difference.

Just in the last three years (after cancer and radiation), I have also developed foot pain, weakness in my legs, and shooting, stinging pains in my feet and legs. Could this be another neuropathy, and if so, what kind? Is it important to be in the care of a neurologist, or can my primary care physician continue to treat me (he was the first to give me Requip).

Jeanne W.

Medical Reply

There are a few issues with your case. You can improve the nausea problem with Requip by taking the medication with food (it will delay the onset by about 1 hour but otherwise should work the same). I would have suggested that you take the entire dose at dinner time (5-6 pm) which might have helped both the nausea problem and the RLS in the evening but it is likely that the sleepiness problem would make this counter-productive.

You might still consider splitting the dose more evenly (like 1 mg at 5 pm and .5 -1 mg at bedtime) even if it means increasing your dose a little. You might also try changing to Mirapex (about half the dose as it is more potent) and see if that causes sleepiness when taken earlier (5-6 pm). Mirapex tends to have a longer duration of action which may also help.

The weakness in your legs and foot pain do not sound like they are related to RLS and may be a neuropathy (which just means nerve injury/inflammation).

Unless the neurologist has a lot of experience with RLS, your primary doctor may be just as good for treating your RLS. There are many other options available if the above does not work for you.


Sent: Monday, November 07, 2011 3:05 PM
Subject: Support for RLS

I was referred to your website for help with RLS. My case seems to be getting worse. I am a 52 year old Female, definitely peri-menopausal. The mental fatigue during the day is terrible. At night after the RLS kicks up, I then get a racing, anxiety feeling. I am up for 2 hours or more. When I fall back to sleep it is a deep one. I never feel rested after getting up for the day.

I was tested years ago, and given an antidepressant which did not help. I currently use intermittent Ativan or over counter sleeping pills to get a break. There has to be better treatment for this by now. I believe this may be the cause of my overwhelming fatigue during the day, that I can not solve for years.

Is there any proof that some foods may aggravate this condition?? Sodium seems to be a big problem.

Linda L.

Medical Reply

You need to see a doctor who understands how to treat RLS as there are many good treatments available that should be able to make you feel much better.

Ativan does not treat RLS but does help you sleep. The over the counter sleeping pills contain antihistamines which (if they donít put you to sleep right away) tend to worsen RLS symptoms.

There is not a lot of information about food and RLS and only you can determine whether any food or mineral (like sodium) worsens your RLS.


Sent: Thursday, November 10, 2011 8:49 AM
Subject: Question about Restless Leg Syndrome

I am a 51 year old male living in San Diego. I am an active runner, normally running 3 to 5 times a week which is 10-20 miles a week. I also conduct stretching exercises everyday. I have diagnosed myself with a mild case of Restless Leg Syndrome. Two or three times a month, I am awoken with the kind of pain described by everything I've read about Restless Leg Syndrome on-line and on your website. That pain only subsides by my flexing and moving my legs as I lay in bed, also as described by others. As recommended on your website, I will start a journal to determine if and how those symptoms relate to running.

The reason I am writing you is I have a different symptom, which I am much more concerned with, that may or may not be related and which I can find no similar description of on-line or on your website. Currently and for the last year or so, all day long (and I assume when I am asleep) both of my calf muscles twitch involuntarily. I can not feel the twitching but can only see it.

The twitching occurs continuously and randomly up and down the length of the calf. Each twitch is isolated to about a 1 to 2 square inch of the calf and lasts for just a split second. I have timed them to sometimes more than 100 twitches per minute per calf. The twitching could best be described as similar to a small electrical impulse in the muscle. The twitching does not hurt and unless I look at my legs, most of the time I am not affected by it, except all of this twitching all day long (and all night long?) causes my lower legs to be very tired all the time.

Do you know if this just a symptom of Restless Leg Syndrome (as some described as the creepy/crawlies)? Or do you think it is something else?

Dave M.

Medical Reply

You may have RLS is the painful sensations are also associated with an almost irresistible urge to move your legs and moving them relieves the symptoms.

The muscle twitching is called fasciculation and has nothing to do with RLS. It is a common occurrence that is typically of no medical interest and just more of a curiosity when it occurs frequently.


Sent: Thursday, November 10, 2011 1:15 PM
Subject: Mirapex or Ambien

A few months ago I had a sleep study done. I was told I had RLS. For sleep I had been alternating Ambien and doxylamine. I was given samples of Mirapex to try. Around the same time, I was diagnosed with hypothyroidism and started taking medication for that. To make a long story short, I never did try the Mirapex, and just started taking Ambien every night to get me through a very stressful period (since early September). I have noticed that I do not seem to have RLS symptoms that I am aware of since I have been taking the thyroid medication and went off of the doxylamine.

I was considering taking the Mirapex, but now I am wondering if should just stay with the Ambien, and maybe alternate it with a low dose of Xanax. I am only getting 3 to 4 hours of sleep on Ambien, however. Any suggestions or thoughts?

MLN, Laguna Hills, CA
61 years young, female

Medical Reply

RLS cannot be diagnosed on a sleep study. The leg kicks (PLMS) that are associated with RLS can be diagnosed on sleep study but they also occur for many other reasons (such as with certain drugs). RLS is a clinical diagnosis based on symptoms not on any test such as a sleep study. Taking Mirapex (or any other drug) for PLMS is very controversial and would also not be recommended in most circumstances.

You should probably hold off taking Mirapex until you have a consultation with a sleep specialist who also understands RLS.


Sent: Thursday, November 10, 2011 10:42 PM
Subject: RLS meds and breastfeeding

I've been taking Mirapex for RLS for a few years, at .125 mg before bedtime. Before I became pregnant, the maternal fetal medicine specialists approved my continuing the Mirapex during pregnancy in order to be able to sleep. I took the Mirapex throughout the pregnancy, and 7 weeks ago, I had a beautiful, completely healthy daughter. Since then, my RLS symptoms have gotten worse, and I've been told that i should not be taking Mirapex while breastfeeding, due to possible risks to the baby.

I tried to stop taking the Mirapex, but was unable to get more than an hour or two of sleep a night, continuing over 4 nights. I am now taking 1/4 of a .125mg tablet (.03mg) at bedtime, pumping the breast milk for 12 hours - one and a half, half lives of Mirapex) and dumping that milk. I am producing fairly little milk - 16 oz a day or so and dumping half of that, but I don't know what else to do to minimize the risk to the baby while trying to give her some of the benefits of breastfeeding.

Are there any other meds that would work to treat the RLS that can be taken during breastfeeding? My doctor seems hesitant to try Wellbutrin, although that has had some effect, according to the literature. It would have the added benefit of the antidepressant effect, which would be helpful in treating my postpartum depression, but she seems to prefer Zoloft, which can increase the symptoms, I've read. Zoloft has not contributed to my symptoms in the past, I don't think.

Carmel N.

Medical Reply

Pregnancy/breast feeding is a challenging time for RLS patients. I typically do not use or recommend Mirapex for pregnancy as it is a category C drug. Using a category C drug increases the risk of problems (which of course does not mean that you will have problems just that the risk is higher) as there are category B alternative drugs that are safer. However, since you have done well with the Mirapex then that is water under the bridge.

Breast feeding is even more difficult as there are no currently approved drugs. The bigger problem with Mirapex is that it decreases prolactin release from the brain (that is the drug that stimulates breast milk production) and thus impairs the ability to breastfeed your infant. It is not known whether Mirapex in secreted through breast milk in humans but some animal studies in rats have found concentration of Mirapex that are higher than in the blood.

Wellbutrin does not typically help RLS but rather is a safe antidepressant drug for RLS patients. Although Zoloft typically worsens RLS, if you have had no issues in the past then this drug may be a reasonable choice.


Sent: Friday, November 11, 2011 10:05 AM
Subject: Leaving well enough alone?

I have been taking Requip for several years. I am currently at 1.25 mg at bedtime. It works. I do not sleep straight thru, but I can usually fall back to sleep whenever I wake up.
Its not great sleep, but I rarely feel any crawling in my legs.

The problem is during the day, particularly in the evening. After work, I can not sit and relax or read a book. I was a big reader. I can watch a movie, if I spend half the movie standing behind a chair. I can usually find some physical activity to keep me moving. But on those days when I am very tired, it is very difficult to keep moving. When I am ill, I can not rest in bed.

So I don't know what to do. I hate to mess with my current medication, because I can at least sleep at night. And I don't want to take anymore medicine than I need to. My experience with the doctors here has not been very good, particularly their suggestions about medication.

Ed M.

Medical Reply

I never like to recommend or prescribe more medication than is necessary to adequately relieve those annoying RLS symptoms. However, you clearly have significant problems that need a change in your present regimen to fix those problems.

Here are the options that you should discuss with your doctors:

You may need to split your dose of Requip and take the first dose about 1-2 hours before you need it in the evening (to give it enough time to kick in). You may have to increase your total Requip dose to cover the new extended period of treatment. The only concern is that if your RLS started occurring earlier in the day since you have started using Requip then you may be experiencing augmentation from the Requip (worsening of RLS due to taking a dopamine agonist drug). If that is the case, then increasing the Requip will help for a while then ultimately make the RLS worse (adding fuel to the fire).

Another option would be to add the new RLS drug, Horizant at 5 pm (or a little earlier if it does not kick in fast enough) with food and that should help cover the evening and much of the night. It is possible that the Horizant might work alone but for now, it would likely be better to take it with the Requip (stopping the Requip will dramatically increase your RLS symptoms for a few weeks and the Horizant may not be up to treating that worsened RLS).

A third option would be to take a tramadol or Vicodin 30-60 minutes before sitting down in the evening (on evenings when you need to sit and relax) and that should cover you until bedtime. There are other treatments options but these are amongst the best choices to try first.

Remember, there are no points given for suffering (to the best of our knowledge, though some may disagree) so I would not put up with your untreated RLS symptoms when so many good treatment options exist that can make you feel well.


Sent: Monday, November 14, 2011 4:26 AM
Subject: Mirapex causing muscle pain?

Can Mirapex cause extreme muscle pain, stiffness, and/or weakness? I have been on Mirapex for about ten years for my RLS, and every couple of years Iíve had to up the dose. Right now, Iím taking .5 mg. around 1:00 p.m., and then another 1.0 mg. at 8:00 p.m. With the increase in dosages, Iíve encountered more and more muscle pain. Have you heard of this?

Rob N.

Medical Reply

I have not heard of muscle pain but I have heard of needing to increase the dose on a regular basis which is most often due to augmentation (which is a worsening of RLS due to taking Mirapex). If the ďmuscleĒ pain occurs with the RLS and relieved by movement, then it may just be RLS and not a separate issue.


Sent: Tuesday, November 15, 2011 9:36 AM
Subject: Meclizine worsened my RLS?

I have done all kinds of stuff to get rid of my RLS-I have been plagued with it all my life, but maybe once or twice a year, last three years it escalated to 24/7. I finally started researching all kinds of things that could help. I tried many, but still no relief unless I took Vicodin, but wanted to rid myself of that drug-FINALLY, I read on a website that antivert can make symptoms worse, I was taking 3 a day and guess what.

I stopped and pain almost gone, I still have a little pain, but it helped about 90% and now I am very happy person. This was one of the worst times in my life.

Tracey S.

Medical Reply

Antivert (meclizine) is well known to worsen RLS. You should print out the medical alert card on our website and give a copy to all your doctors as it contains the list of medications that worsen RLS and alternative drugs to use.


Sent: Tuesday, November 15, 2011 3:07 PM
Subject: What kind of bed/mattress

My husband suffers from PLMD. We have been sleeping in separate beds but would really like to be able to share a bed again. At the moment we are trying to debate whether to opt for twin beds or to go for a Tempur Pedic. He is not currently taking any medication.

I would like to know what people's experience of the Tempur-pedic mattress has been, whether they bought a particular type, whether it is possible to buy a double mattress or whether we'd be better off with a King Size? Do we need a specific type of bed base?

Nicola

Medical Reply

The base is not that important but I do recommend that you get a king size (eastern king, not the California king which is longer but narrower) and any of their memory foam mattresses will do (you pick them based on how comfortable they feel to you). Twin mattresses would be better but the memory foam is pretty good at damping the leg kicks.

The best solution is twin beds that you separate by a fraction of an inch when you go to sleep.


Sent: Wednesday, November 16, 2011 11:36 AM
Subject: Re: Help with RLS!

Thank you so much for this website. I have suffered from RLS my whole life, but in the past six months, the condition has worsened a great deal. I am a 37 year-old male. Many nights my RLS prevents me from falling asleep as I will toss and turn for 4-8 hours in bed, unable to stay still long enough to fall asleep. I haven't had a "good" night sleep in at least 3 months. Needless to say, this has reduced my quality of life a great deal.

I am asking for help because I currently live in Mexico with my family. I do not have health care here and doctors are extremely expensive. Additionally, doctors in Mexico are not familiar with RLS and have no idea how to deal with the condition. For this reason, I have largely been forced to self-medicate, a practice I would never take up if I was in the United States.

Two days ago I started myself on the drug Rompinirole (Requip) after reading a great deal about it. But I must say it is very scary for me to start a drug on my own without any medical supervision. I began with by taking .25 mg. Each night the drug helped me sleep and helped prevent the RLS. It also put me into an extremely fatigued, hazy, drugged state. I had very vivid dreams and felt almost like I was watching myself as I slept...that I was very aware. During the day I have also felt very drugged and extremely sleepy despite sleeping 9 or 10 hours. I feel as though I can barely open my eyes.

My most specific question is whether this is a normal side-effect of Requip and if I can expect it to go away with time? Also, more generally, I was wondering if my self-medicating choice of Rompinirole seems appropriate and if Requip is a proper drug to take. I would love an expert opinion and some guidance on the subject.

Matt B.

Medical Reply

You are correct about not treating yourself. You should still try to see a doctor even if you have to guide him through the process.

Requip has been known to cause increased sleepiness but typically that occurs at higher doses and not at the low starting dose of .25 mg. If this persists (over a few weeks), you may want to consider trying Mirapex (pramipexole) at its lowest dose, .125 mg. There are other choices/options available but those would be more off label in Mexico and more difficult for the doctors there to control/adjust.


Sent: Monday, November 21, 2011 7:19 PM
Subject: Moderate to Severe RLS

Thanks so much for answering my email so quickly in May, but it has taken several months for this situation to play out. Much to my surprise and relief the neurologist that I am seeing was much more on top of things than I anticipated when I saw him next in May and suggested I start taking 1 mg of ropinirole after lunch to see if that improved the early onset of RLS in the afternoons. In June he switched out the Tramadol for Methadone. Although I could take up to 5 mg, Iíve found that 5 mg of Ropinirole and 2.5 mg of methadone, taken Ĺ hour or so apart has been effective for the most part in the evenings.

My nights of RLS busting through the meds have decreased to a couple of times a month and then the meds kick in, with slightly elevated dosage to 6 mg ropinirole and 5 mg methadone within a couple of hours, rather than suffering all or most of the night. However, the augmentation is sometimes better, sometimes worse, but has not disappeared by taking the one tab of ropinirole in the early afternoon.

Sorry for the long run in, but the doctor and I have talked about switching gabapentin for ropinirole, as he thought that Horizant was time released gabapentin and felt that gabapentin, with methadone as needed, should work. However, heís prescribed adding 600 mg of gabapentin to 2 mg of ropinirole to start with at night, rather than switching over to gabapentin totally right away.

I would have typically just done what the doctor. prescribed, but am leery of any drug interaction/not-working issues and/or whether this would be as effective as the ropinirole and methadone combo Iíve been doing. Thanks in advance for any additional advice you can provide. Iím not in the habit of second guessing my doctorís prescriptions, but I have learned to try to be my own advocate as much as I respectfully can with RLS as itís so hard for someone else to understand what it is youíre going through.

Scott A.

Medical Reply

The issue with gabapentin is that it is very poorly absorbed from the bowel and increasing the dose typically means that your get a smaller percentage of the drug into the body. The new Horizant gets around this issue and has dose proportional absorption regardless of the dose. The extended release aspect of the new drug is an added benefit. I use very little gabapentin as due to its poor bioavailability with increasing doses and the variability from person to person. Lyrica and the new Horizant are much better choices.

With augmentation, we typically try to discontinue the dopamine agonist or at least decrease the dose to as low as possible. Once off the dopamine agonist, the augmentation usually reverses and the RLS symptoms reduce to much more tolerable levels.

    A Reply from Scott

Sent: Thursday, December 08, 2011 6:32 PM
Subject: RE: Moderate to Severe RLS

Thanks for the quick email return. I saw the doctor today and this is the program he came up with for Lyrica. Thoughts on this. Iím assuming you would be in favor of discontinuing the ropinirole as quickly as possible due to the augmentation thatís on-going.

Scott A.

Medical Reply

Using Lyrica is quite reasonable. If the RLS occurs earlier in the day, you may discuss taking an additional dose of Lyrica in the am with your doctor. Stopping Mirapex will cause a marked worsening of your RLS that will need increased doses of methadone.

    A Reply from Scott

Sent: Friday, December 09, 2011 7:19 AM
Subject: RE: Moderate to Severe RLS

Medical Reply

Maybe Iím just dense, but my neurologist seems to be attempting to wean me off of the Requip by doing a stepped introduction of Lyrica, starting at 1, 75 mg tab and increasing the dosage, while maintaining the Requip at 5 mg levels to start with and then reducing that dosage when increasing the Lyrica. Iím 6í1Ē weight 215 and am 58, and can withstand above avg. dosing, even being in recovery, but I did one 75 mg tab of Lyrica last night & 3.75 mg of methadone, then tried to go to bed.

RLS won, so I took 4 mg of Requip and the other 1.25 mg of methadone finally got to sleep, but woke up pretty groggy this am. Iím obviously concerned about the right mixture of dosage without overdoing it. I know you arenít my doctor and have never seen me, but I would hope you would have some general advice.

Scott A.

The gist of this issue is that stopping the Requip (especially once augmentation has occurred) will cause a very dramatic increase in RLS symptoms that drugs like Lyrica cannot fully treat. Even with the maximum Lyrica dose (300 mg), it is very unlikely that the drug will be sufficient to cover your intense RLS symptoms created from stopping or tapering the Requip.

I typically stop the Requip (usually cold turkey but a slower taper is also very reasonable) and use larger doses of methadone (up to 10 mg three times per day) to cover the exacerbation of RLS symptoms. This worsening will last several weeks or longer but sooner or later the RLS symptoms will calm down and less methadone will be needed. Lyrica can be added then (or earlier) and may help some of the RLS symptoms (better chance of that happening once the RLS has calmed down) and will allow a further decrease in the methadone dose. It may be possible to eliminate the methadone but often a low dose may be necessary indefinitely.

Hope this explains it. Most doctors are not that familiar with treating augmentation and donít fully comprehend the problems and the techniques needed to treat it.


Sent: Tuesday, November 29, 2011 7:47 AM
Subject: Reprivia

Has anyone in your group reported on Reprivia results?

http://www.reprivia.com/product.html#What_is_Reprivia

My partner is a longtime suffered (to put it mildly) of RLS, and I am reluctant even to bring this up to him, as he will likely be skeptical (as I am).

Kim VD
Dalton, MA

Medical Reply

Reprivia is not an FDA approved product (although they state that it is listed with the FDA, that means absolutely nothing). There is not a single study in the medical literature evaluating that product. Their website lists studies that discuss counter-stimulation (mostly in general terms) but none of the studies listed have anything concrete to do with their product.

It is certainly possible that Reprivia may help relieve RLS symptoms but it is just as possible (or more likely) that it will only provide a placebo response for a short period like many of the other untested RLS remedies. Therefore, I cannot recommend this device but would be very interested if they published some studies on it in a credible medical journal.

As far as your partner's RLS, let him know that with the available therapy today, almost all RLS sufferers can get relief if they are being treated by a knowledgeable RLS doctor.


Sent: Tuesday, November 29, 2011 7:26 PM
Subject: Natural PLMD treatment

I was recently diagnosed with PLMD and was wondering if there are any natural remedies for the symptoms, or if there are any things I can do (like stretching or hot compresses) before going to bed. I've read some websites, but most seem to have hocus pocus reasons for why their treatment works. I'm not a big fan of medication, so I'm just looking for a more natural way to take care of this issue.

Melissa H.

Medical Reply

Stretching, exercising, hot or cold bathes, compresses are all known to help RLS but less is know (if anything) about their effect on PLMD. In fact, other than drug therapy (dopamine agonists, anticonvulsants), no other therapies have been demonstrated to benefit PLMD.

The other concern is exactly how your PLMD was diagnosed. Although a sleep study can easily document PLMS (PLM while sleeping), the diagnosis of PLMD (PLM causing a true disorder) requires proof that the PLM are actually causing real medical problems other than just observable leg jerks that may not be actually affecting your sleep. Treating PLMS or PLMD is very controversial and it is likely that most patients do not need any treatment (other than getting twin beds or a larger memory foam mattress so that they don't bother their bed partner).


Sent: Wednesday, November 30, 2011 3:49 PM
Subject: Clonazepam and Requip.

I currently take 1mg Requip nightly for RLS I also take 2mg clonazepam as needed for anxiety. How long should I wait between taking the 2 separately?

Amy H.

Medical Reply

Both those pills have independent actions and you should take each at the time that they work best for you without regard to when you take the other pill (you could take them together for example).


Sent: Thursday, December 01, 2011 10:27 AM
Subject: Requip causing nasal congestion and dizziness?

I take gabapentin - 600mg 2x at night & Pramipexole 1 1/2 .25 mg pills at night (Mirapex generic). One side affect is some occasional serious dizziness - and my ears are stuffy and I need to "pop" them all the time. I think the dizziness is caused by the ear problem

Is there a RLS-safe decongestant that will not worsen my RLS - but relieve the ear congestion ?

Mike

Medical Reply

Mirapex (pramipexole) can cause rhinitis (nasal congestion) which could result in Eustachian tube blockage and inner ear dizziness. However, it is also possible that the gabapentin is causing the dizziness especially if the dizziness is not vertigo like.

All decongestants do not affect RLS but they are often combined with an antihistamine which often does worsen RLS. Antihistamines like Claritin, Allegra, Zyrtec are fine and do come in ďDĒ forms that contain a decongestant (like Claritin-D).


Sent: Thursday, December 01, 2011 3:07 PM
Subject: Remeron (mirtazapine) Warning

My doctor (GP) and I are still trying to find the delicate balance for a sleep aid and RLS control at night. He recently put me on a 30 mg dosage of Remeron to get me to sleep and stay there, in addition to my two Sinemet. Though I had cut off any liquids about four hours before I went to bed, I awoke - after two hours of sleep - to have go urinate. This continued for six or seven times - often at 10 minute intervals - over the next couple of hours, by which time my RLS had come back and wouldn't allow me to lie in bed. So, I got up and sat in a darkened room for about two hours when, inexplicably, the RLS symptoms disappeared and I could go back to bed. I went to sleep (tired and cold by that time) and awoke 7 1/2 hours later.

While Remeron DOES allow sleep, it also has a built-in diuretic effect that completely counteracts its intended use, sleep, until my system had been wrung dry with six or seven visits to the bathroom. Needless to say, we're going to try to find something new for a sleep aid and my doctor is taking me off Sinemet to put me on Requip.

For the record, I have tried Ambien and it doesn't provide the needed sleep effect though I had no odd side-effects. I have also tried Hydrocodone to aid sleep (with Benedryl as a booster) and that doesn't last but a few hours and I'm awake again.

What would you suggest as a much more effective sleep aid to pair with my Requip?

R. Stephen D.

Medical Reply

Before getting any further therapy for RLS, you should download our free RLS Medical Alert Card from our website and give one to your doctor and read it completely yourself. This card has the list of medication classes that worsen RLS and alternative drugs to use that do not bother RLS.

Remeron and Benadryl both tend to trigger RLS symptoms so they are bad choices for RLS patients. Sinemet is not longer used on a daily basis for RLS (this has been well known for the past 15 years) as it worsens RLS with time. Requip or Mirapex are much better choices as is the newer RLS drug, Horizant (which also has sleepiness side effect that typically are maximal at bedtime so may be a good choice for you.

With proper treatment of your RLS, Ambien may be sufficient to help you sleep. If not, Lunesta is a good alternative choice (that can be taken with all the above RLS approved drugs).

A Reply from R. Stephen

Sent: Saturday, December 03, 2011 8:20 AM
Subject: Remeron (mirtazapine) Warning

As to the results of my second night on Requip: I got a decent night's sleep at last. Since I had previously tried the .5 mg of Requip without any sleep aid and had had a sleepless night, I was determined to get some sleep. So, I increased the Requip dosage to .57 and added an Ambien (as I had seen in one of your responses to another patient.)  And, of course, I took a Sinemet as I withdraw from that drug. I went to sleep normally, awoke once to go to the bathroom and awoke again at 7:29 AM.

Marvelous. I'm only normally sleepy this morning but don't have the heavy overhang of tiredness that I have had for sometime. I have no trace of RLS an hour after arising though I usually am driven from bed in the AM.

Pursuant to your advice, I will cut back my Requip tonight to .5 mg and add the Ambien (no side effects whatsoever, by the way).

R. Stephen D.


Sent: Wednesday, December 07, 2011 11:31 PM
Subject: RLS?

I am 37 year old male. I had been having uncomfortable feelings in both legs since 2008. The symptoms started out as an uncomfortable tightness, sometimes aching, tingling. The symptoms have worsened over the past few years, the symptoms now usually start out with tightness and quickly turn to extreme pain on the outside of the shin And calf. Pain is only felt below the knee to above the ankle and they periodically cramp. Symptoms start after within a few hours of sitting in a chair and within less than an hour at night as I am relaxing on the couch. Getting up and walking is the only thing that truly relieves the symptoms.

6 months ago I went to my primary care doctor and described the symptoms. My primary complaint was the pain. I also was only getting two to three hours of sleep due to pain and was having extreme morning migraines. I was referred to a pulmonary doctor. The pulmonary doctor ordered a sleep study and stated that based on my description, I had a severe case of restless leg syndrome and more than likely, sleep apnea. Sleep study showed I had obstructive sleep apnea and periodic limb movement. He started me on .25 mg Mirapex, which controlled the limb movement but did nothing for the pain. I then tried .5 mg Requip and had the same results.

He then tried me on gabapentin, 300 mg 1-3 at night for pain. I got a drunk feeling when I took this and it did not relieve the pain. Finally he put me on Vicoprophen, 7.5 mg/200, 1-3 for pain. This doesn't completely get rid of the pain but has made it completely manageable. My pulmonary doctor was happy with those results and has kept me on Mirapex and Vicoprophen for the past 6 months.

When I went back to my primary care doctor, he was appalled that I was taking Vicoprophen for long term use so he referred me to a neurologist for a second opinion. The neurologist came to the same conclusion as the pulmonary doctor. Still not satisfied with that answer, my primary care doctor sent me to a pain management clinic. I didn't get to see the doctor, I saw a physicians assistant. He listened to my complaints and said the symptoms I listed above are not symptomatic of restless legs and that I more than likely had a bulging disc in the L4 L5 or S1. I went on to have an MRI of my lower back which did not show anything major. I then had a nerve and muscle conduction test. The doctor who completed the test stated It looks like I have an irritated nerve in my lower back or hip and suggested epidural injections in the L5 and S1. I received the first injections a week ago and not only do my legs feel horrible but my lower back aches around the injections. I am due for the next injection next week.

Some additional information that may help. I have a grandmother who has the same symptoms as I but with less pain. I have been on a CPAP machine for sleep apnea over the last 6 months and between the machine and the medication, I feel a lot better. I had fasciotomy done on both legs due to exertion compartment syndrome in 2008. I ended up having both legs re-done, releasing all the way below the ankle due to additional pain and an MRI showing the fascia cutting off the circulation below my ankle. My symptoms began around the same time as recovering from these surgeries. I am active duty military and that is why I keep bouncing from doctor to doctor. I am basically at the will of my primary care doctor. He keeps referring me looking for a different diagnosis.

Do my symptoms sound like restless leg syndrome? I'm not sure these epidural injections are going to help but could they make my condition worse? I am concerned about becoming addicted to pain medicine. I don't have a history of abuse, I don't even drink alcohol. Should I be concerned and is there anything I can do to prevent it? If this is restless leg syndrome, does the pain level peak or over time will this continue to get worse?

I am confused by the conflicting doctors diagnosis and appreciate your time and opinion.

Chris

Medical Reply

It is not at all clear whether the pain you are experiencing is due to RLS or to something else like your previous surgery. If the pain comes on only at rest (simultaneously with your RLS urge to move) and improves/relieved by movement then it is likely due to RLS. Otherwise, it may not be related at all and thus should be diagnosed and treated appropriately.

RLS pain may be treated with opioids if tolerated and usually by trying several, one can be find that is well tolerated. Tramadol is a non-opioid (or at the worst, a minimal opioid) that also works well for RLS pain. Although you did not do well with gabapentin, the new drug Horizant (which turns into gabapentin) may still work much better and be better tolerated. Lyrica is another choice that acts of the same receptors as gabapentin/Horizant.


Sent: Thursday, December 08, 2011 7:15 PM
Subject: Bethanechol effect on RLS

I recently started on Bethanechol, for maybe two to three month. Recently my RLS which only required treatment in the evening, now is with me almost 24 hours a day. Taking my daytime nap is impossible, for instance. At times I wake up with RLS, something I have never experienced in all my 50 years of having RLS. Is it possible the Bethanechol is causing this change in my RLS symptoms?

TB

Medical Reply

Although I have never prescribed Bethanechol to any RLS patients, it is in a class of drugs that should not bother RLS. I have many patients with RLS on similar drugs without any known worsening of RLS. Of course, that does not mean that the Bethanechol may not be causing your problem, just that it is much less likely. The best thing to do would be to stop using for several days and see if the symptoms improve or do not change.


Sent: Saturday, December 10, 2011 10:36 AM
Subject: Pain and RLS?

I am a 28 year old female living in Florida. I was diagnosed with Fibromyalgia when I was 23 years old and re diagnosed with severe restless leg syndrome about 6 months ago.
Years ago I was on tramadol 100 mg 2-3 times daily for the fibromyalgia pain. I had told my doctor(s) that this was somewhat working, but not well enough. Most doctors did not agree with pain medication for fibromyalgia and wanted to put me on drugs that were approved for my diagnosis, such as Lyrica, Savella, Prozac, and Paxil. I tried them all and I felt like no one was hearing me when I was practically in tears telling them what was going on with me and these drugs were not working.

I have had pain in my legs since a child. My mother would tell me that these were growing pains and to prop my legs up and that would help ease the achy sensations in my legs. I started doing that and would do the same with my arms. It didn't really help, I would eventually fall asleep. As I've gotten older the pain has gotten worse. I finally saw a neurologist a year ago and was again diagnosed with fibromyalgia but I wasn't buying it. It just didn't fit with who I was and what I was experiencing.  I had heard about restless leg syndrome over the years and never really looked into it. I think because my mother had it and she would move her legs constantly and that wasn't what I was doing.

I stopped seeing the neurologist because he refused to give me pain medication. He basically told me I needed to go to pain management but he wasn't the person to help me.
I happened to come upon a pamphlet about restless leg syndrome in his treatment room and was shocked when I discovered I had been misdiagnosed all along. I asked the ARNP to go over it with me. This was an area that was she was extremely familiar in and she claimed that pain was not a symptom.

My husband was with me at the time and he saw that leg twitching was something RLS patients experienced and he said something right away. This was something I had been dealing with for so long that I almost thought of it as second nature. I could check off almost every box. Tingling, numbness, twitching, uncomfortable when sitting or lying down, burning. And there it was: pain. She had said this wasn't a symptom but here it was in plain lettering.

The pain I experience on a daily basis is beyond bearable at this point. My hips and thighs burn, my knees ache, my shins burn, my ankles throb, my calves and bottoms of feet feel like they are thawing out from being frozen. My current doctor has me on Percocet 5/325 mg three times daily. It worked at first, but even when the pain has subsided from the medication there is an overwhelming anxious feeling in my legs that I need to get away from them. That if I could amputate them I would. If I could have another epidural like the I had when I went into labor with my daughter I would be forever grateful to not have to be constantly aware of my legs.

My hands, feet and legs twitch throughout the day. It is more severe when I lie down to sleep and often hinders me from falling asleep. My husband says I twitch all night long. Sometimes its even my torso or head that feels like it is twitching before I fall asleep. There have been times I have almost jumped clean out of bed involuntarily. I finally convinced my doctor to give me Ambien. But the memory loss is often scary. I have been known to pay bills or make phone calls without remembering. I started Requip 0.5 mg about four weeks ago. Nothing came of it. I started taking 2 tablets at bedtime 2 weeks ago and still nothing, but I know its still soon.

My biggest issue is that I feel as if no one really believes that I am as miserable as I say I am. I had been hospitalized a year ago when I had terrible morning sickness and could not keep anything down. I was given 2 mg Dilaudid IV every 6 hours and I was begging for it by 5 hours. (This was when my diagnosis was still fibromyalgia) I couldn't lie still, I couldn't think about anything but relief and I was practically in tears when the nurse would finally come in and give me a horrible look because I was 8 weeks pregnant. I was allowed tramadol throughout my pregnancy and my baby was born healthy without any withdrawal.

Do many people experience pain to this degree and all day long? My pain is the worst during the late morning and early evening hours. At night the numbness and tingling start to kick in along with the pain. What is the best way to treat someone like me? Opioids work well, but only for so long and its hard to convince my doctors that I am in serious pain and my quality of life is at stake. They seem reluctant to give out pain medication, especially to someone that seems to need it almost constantly for a syndrome that they aren't entirely sure that I have.

Rachel M.

Medical Reply

Pain can certainly be a component of RLS and typically about 20% of RLS sufferers use the term pain to describe their symptoms. However, many may be using this term as there is not usually another term that better fits their symptoms. The real question in your case is whether the pain is coming from your RLS or from a neuropathy associated with RLS (about 20% of patients, especially those with later onset of RLS after 45 years old tend to have an associated neuropathy that is often painful). From the widespread nature of your painful symptoms, it is more likely that the symptoms are coming from the RLS. However, a simple test would be if the pain improves with movement (like walking) and is worse at rest, then it is more probable that the pain is due to RLS.

If your pain is due to RLS, then it may respond to Requip or Mirapex. Sometimes larger doses may be needed (like 2-4 mg of Requip) but we are now trying to avoid these higher doses (they may cause worsening of RLS with time, called augmentation). Often the best treatment includes an opioid (oxycodone which is in Percocet that you have already tried is reasonable but methadone usually works better) but higher than usual doses are of frequently needed to treat painful symptoms. The other trick is to combine the opioid medication with an anticonvulsant such as Lyrica (higher doses may be necessary) or Horizant.


Sent: Monday, December 12, 2011 6:30 AM
Subject: Severe daytime restless legs syndrome-advice sought-please help

I thank you for taking the time to read my email. I have written you before and your response was very helpful; and I appreciate any and all advice on this subject matter, as I am in discomfort. I am a 35 year old male (as of December 20th to be exact); and suffer from Bipolar II disorder, with severe refractory daytime restless legs syndrome. Ironically, the bipolar disorder is easily managed; but the restless legs disorder is causing me to be almost disabled; at times.

I am on the following medications listed below; and it is important to know that I have been on these medications for years, as some had to be reduced to the doses shown below due to the fact that most bipolar medications make restless legs syndrome much worse. My question is this; I have had success with methadone and have no prior history of addiction or substance abuse in my past. I do not drink, and I follow all medication guidelines as prescribed. My doctor is wondering what else can be done for me, as the methadone reduces my symptoms by 50%-60% (which to me is a success; as I can work); and every other medication has failed (Requip, Mirapex, all the anticonvulsants, and mild narcotics).

That being said, he is hesitant to increase my methadone, regardless of how much suffering I am in. He is worried that as I get older more methadone may constantly be required to maintain the same effect it once has. My argument is that it is already helping me and I have been on it for at least five years (or more). It should be noted that methadone truly saved my life. Before trying it; going to work or college would not have been possible. In fact, thanks to methadone I graduated college with a 3.9 GPA in business administration from a private college! I am hoping you can recommend something; as methadone has been a life saver for me, but my doctor is hesitant to increase my dose, even though I have been on the same dose for five years. I thank you for your advice; and listed below are my present medications:

It should be noted that most doctors are very cautious to prescribe methadone (I was actually referred to a pain management center; as the doctor refused to prescribe it). The doctor (my neurologist) only started writing me prescriptions when the pain management center asked why he can't write the 'scripts' himself; as I have responded positively to the drug. This is unfortunate, as it truly saved my life; as has your website. For that, I thank you!

Depakote 250 mg (current dose- was reduced due to akathisia and anxiety)
Klonopin 0.5 mg (severe 'rebound anxiety' from this medication; I use it in the morning with caution)
Neurontin 1200 mg (side effects are worse at higher doses)
Ambien 10 mg (wake up with 'rebound restless legs' and anxiety-is there an alternative?) sleep study was almost normal; while on this drug
Methadone 30 mg a day (reduces symptoms by 50%-60%; doctor is hesitant to increase dose)

Any advice is appreciated. Hopefully I can live a FULL normal life one day. I do suffer from bouts of anxiety and akathisia that cannot be explained. My main complaint is daytime restless legs. It is normally under control and has been reduced dramatically, but is still present; especially at work and while under stress.

Shawn

Medical Reply

You are already on the maximum methadone dose that I normally prescribe so I would not recommend increasing that drug. Neurontin/gabapentin does not get well or reliably absorbed so we really donít know how much is getting into your body/brain. The newer gabapentin drug, Horizant works much better in that it gets well absorbed predictably and comes in an extended release formulation. If that does not work for you, Lyrica (that is if you have not already tried that drug) is another very good choice that may help your RLS symptoms and help you reduce your reliance upon methadone.

Ferritin levels are overlooked and if your level is not over the 50-75 level, iron supplementation may be very helpful.

A Reply from Shawn

Sent: Tuesday, December 13, 2011 4:23 AM
Subject: Re: Severe daytime restless legs syndrome-advice sought-please help

Yes, I did try Lyrica and got very 'hypo-manic' while on that drug. It is possible that I took it at a bad time, but I noticed increased restlessness while on it. I am trying to get my doctor to put me on Horizant. I just hope I have not run out of options?

Have you seen severe cases of RLS like mine; that require this much trial and error (for treatment); with extreme daytime symptoms? I am nearly 'disabled' due to this condition and I am already on FMLA. At 35, I was hoping for a better quality of life.

Shawn

Medical Reply

Most all the cases that I see are difficult cases such as your case. There are usually other options to try such as Horizant and even other anticonvulsant drugs. Intravenous iron is experimental but often provides excellent relief (even when ferritin levels are not that low).


Sent: Thursday, December 01, 2011 3:07 PM
Subject: Remeron (Mirtazapine) Warning

My doctor (GP) and I are still trying to find the delicate balance for a sleep aid and RLS control at night. He recently put me on a 30 mg dosage of Remeron to get me to sleep and stay there, in addition to my two Sinemet. Though I had cut off any liquids about four hours before I went to bed, I awoke - after two hours of sleep - to have go urinate. This continued for six or seven times - often at 10 minute intervals - over the next couple of hours, by which time my RLS had come back and wouldn't allow me to lie in bed. So, I got up and sat in a darkened room for about two hours when, inexplicably, the RLS symptoms disappeared and I could go back to bed. I went to sleep (tired and cold by that time) and awoke 7 1/2 hours later.

While Remeron DOES allow sleep, it also has a built-in diuretic effect that completely counteracts its intended use, sleep, until my system had been wrung dry with six or seven visits to the bathroom. Needless to say, we're going to try to find something new for a sleep aid and my doctor is taking me off Sinemet to put me on Requip.

For the record, I have tried Ambien and it doesn't provide the needed sleep effect though I had no odd side-effects. I have also tried Hydrocodone to aid sleep (with Benedryl as a booster) and that doesn't last but a few hours and I'm awake again.

What would you suggest as a much more effective sleep aid to pair with my Requip?

R. Stephen D.

Medical Reply

Before getting any further therapy for RLS, you should download our free RLS Medical Alert Card from our website and give one to your doctor and read it completely yourself. This card has the list of medication classes that worsen RLS and alternative drugs to use that do not bother RLS.

Remeron and Benadryl both tend to trigger RLS symptoms so they are bad choices for RLS patients. Sinemet is not longer used on a daily basis for RLS (this has been well known for the past 15 years) as it worsens RLS with time. Requip or Mirapex are much better choices as is the newer RLS drug, Horizant (which also has sleepiness side effect that typically are maximal at bedtime so may be a good choice for you.

With proper treatment of your RLS, Ambien may be sufficient to help you sleep. If not, Lunesta is a good alternative choice (that can be taken with all the above RLS approved drugs).

A Reply from R. Stephen

Sent: Friday, December 02, 2011 6:40 PM
Subject: Two Questions

Your site and advice are Godsends and I am using them to educate my general practitioner to the nuances of RLS - in particular, mine.

I have a low-level RLS but the disease itself and the meds we have been trying to allow me more than 2 hours of sleep at night are not yet in balance. Just yesterday, my GP started me on Requip .5 mg, taken three hours before bedtime. I am taking one Sinemet per night for another six days to wean me off of it. The problem is, the .5 mg of Requip gives me slightly more than 2.25 hours of sleep and I can't get back to sleep because of just enough RLS "crawlies" to drive me up to a dark, cold house and many sleepless hours.

My doctor wants me to continue this regime of .5 mg per night for a full week to allow the Requip to "build up" in my system before adding another .5 mg. tablet and trying, then, 1.0 mg. of Requip for a week. A third week without full relief of RLS would add another .5 mg, ditto the 4th week.

Last night gave me 2.25 hours of sleep. That's just not cutting it. Is his prescribed regime reasonable?

Secondly, I have available Vicodin 5-500 tablets. Can they be of use, with the problem discussed above, to help me sleep better as I slowly escalate the Requip dosage to whatever is optimum for me?

R. Stephen D.

Medical Reply

Your doctor is correct in that Requip should be increased slowly to avoid side effects. I actually start at .25 mg and increase by .25 mg every 5-7 days. These days most RLS experts try to keep the total dose of Requip to a maximum of 1 mg to avoid long term problems like augmentation (worsening of your RLS such as happens with Sinemet).

Opioids such as Vicodin are often used during the titration period to help breakthrough RLS symptoms. I often use methadone as it lasts 8-10 hours compared with 4-6 hours for Vicodin (which means it may not get you through the night).

A Reply from R. Stephen

Sent: Monday, December 12, 2011 9:05 PM
Subject: Melatonin

I'm a 71 year old male with light to moderate RLS. I have just escalated to Ambien CR 12.5 mg just before bedtime and about 3 hours after taking a .5 mg Requip. Basically, I can't stay asleep and awake before my Requip has worn off (e.g. 1-3 AM) and can't get back to sleep. I have several questions related to this regime (Note that I haven't tried the CR version before but the plain Ambien 10 mg just didn't last much beyond 1-4 AM, tops.)

My questions are these:

1. Do you feel Melatonin might help somewhere in this regime and, if so, in what dosage?

2. I have had recent surgery and need occasional Vicodin to control that. Is that going to be a problem interaction with the Ambien CR?

3. I've read your book (absolutely excellent and I'm a fussy technical writer) and have given a copy of your clinical book to my GP and kept your less clinical book for myself. My GP feels methadone is too addictive for me but I have a worry that the Ambien CR regime might not gain me much sleep (according to the research cited in your book). So, where can I go from here if the CR doesn't give me a decent night's sleep? I've gone from Sinemet to another drug to Ambien and now am about to try the CR version.

My RLS is no problem if I can stay asleep but if I awaken at 2, 3 or 4 AM, I'm soon to be driven from bed to sit up until dawn. VERY frustrating. My GP has me scheduled for a sleep clinic some weeks from now but I have no idea if they can improve on my current care. I can feel myself getting worn down and depressed even though I fight it.

Thank you for any thoughts you can share.

R. Stephen D.

Medical Reply

First of all, it is very unlikely that a sleep study will be of any benefit for figuring out what to do with your RLS related insomnia problem. Most doctors do not really understand that RLS is an awake condition and the sleep study adds almost no extra information that can be used clinically (unless they are suspecting that you have significant sleep apnea which presents with increased sleepiness problems, not insomnia).

Treating your RLS with sleeping pills (Ambien, melatonin) is like treating severe back pain that prevents you from sleeping with those same drugs. It may work at times but it really does not get at the root of the problem. It is not clear from your letter that the Requip may be causing insomnia or not, so I cannot recommend increasing the dose (which may present other problems). Changing to Mirapex may be helpful as that drug has a longer half-life so may work better for you.

Another very good choice would be the new drug Horizant that has just been approved for RLS. It works well to reduce RLS symptoms and has the added benefit of helping sleep so you may be able to ďkill 2 birds with one stoneĒ. It would be better to treat your RLS properly and only use Ambien occasionally when you have sleeping problems (like when you are more anxious).

A Reply from R. Stephen

Sent: Tuesday, December 13, 2011 10:50 AM
Subject: Re: Melatonin

I share your feeling that a sleep clinic is unlikely to be much help to me but I will, probably, give them the opportunity to demonstrate their understanding of the problem with my initial visit.

To clarify: I am sure that Requip is not causing my insomnia. My insomnia has not changed character nor duration of my insomnia but it does seem to control my RLS better at night. I don't feel increasing dosage would be of value. The issue has now clearly become one of finding a drug that KEEPS me asleep after the first few hours. Last night, my first night on the Ambien CR, I awoke - just as you indicated in your Clinical book - within a very short time of the normal strength Ambien (3:26 AM) and finally got up as the RLS began to be a problem.

You'll have to take my word on this but I'm not an anxious person. I can mention Horizant to my GP but if it does not have a much longer half life than Ambien, then it would be of no more value than Ambien is.

Again, the problem is one of KEEPING ME ASLEEP. Many drugs can GET me to sleep but none, so far, seem to KEEP me asleep longer than about 4 - 5 hours, tops. Like clockwork, I go to bed at 10:00 PM with Ambien on an empty stomach and with no alcohol nor tobacco to complicate its efficacy. And, regularly, I awake from 2:30 - 3:30 AM and am awake for the rest of the day.

I think this clarifies all of the nuances and I would appreciate any follow on observations you can make. I talked to my pharmacist about Plan B medications for sleep and all he could think of was Lunesta and, when pressed, admitted that it did not have any half-life advantage over Ambien.

R. Stephen D.

Medical Reply

You state that if you wake up, you canít get back to sleep because of the RLS symptoms (ďMy RLS is no problem if I can stay asleep but if I awaken at 2, 3 or 4 AM, I'm soon to be driven from bed to sit up until dawn.Ē). Although you see your problem as a sleep maintenance insomnia issue (and certainly it falls under that general category), it still is really an RLS problem at its core. My analogy to back pain is very relevant. If back pain prevents you from falling back to sleep after waking up, you really want to treat the back pain not try to ďknock outĒ the patient so that they can sleep through the night.

Most people have several brief awakenings throughout the night but fall back to sleep so quickly that they do not remember them. In addition, at your age going to the bathroom may occur 1-3 times per night which would further complicate matters. Sleeping pills are not really designed to keep people asleep when there is a significant underlying stimulus (like RLS, back pain, etc.) preventing them from falling back asleep. This problem gets worse as the night progresses as the sleep pressure (from the sleep center in the brain) decreases as wake time approaches.

A sleeping pill that would get you through the night given your RLS problem might very likely keep you asleep in the daytime also. If you look in my book, you will see that Ambien has a half-life of 2.5 hours (mildly increased to 2.8 hours with the CR version) while Lunesta has a half-life of 6 hours. Most of the benzodiazepine sleeping have much longer half-lives but then run the risk of causing next day sedation.

A Reply from R. Stephen

Sent: Tuesday, December 13, 2011 7:07 PM
Subject: Re: Melatonin

I'm sorry to have been slow on the uptake with your analogy but I see what you're saying. That being said, and now that I'm on .5 mg of Requip to go with the Ambien, it seems that you are suggesting that I increase the dosage of Requip somewhat so that when I awake, the Requip prevents the RLS from driving me from bed. Is that correct? (And, yes, I well remember the comments about the Ambien and Ambien CR half lives.)

R. Stephen D.

Medical Reply

Increasing the Requip is one possible option. It would be most effective to take the extra amount (like .25 mg) just before going to bed so that it will last throughout the night (Requip has a half-life of about 6-8 hours). Alternatively, you could change to Mirapex which has a long half-life (8-12 hours, but one always hates to rock the boat too much making too many changes in medications). We generally like to keep the Requip dose at a maximum of 1 mg these days to avoid long term problems like augmentation.

Another option is the Horizant which I discussed before that may take care of the RLS and help you sleep.


Sent: Tuesday, December 13, 2011 10:21 PM
Subject: question about Percocet

Thanks to you, I was able to explain to my PCP that I was having terrible augmentation on Requip.

She took me off Requip and started me on two "5-325" (I think it means 5 mg oxycodone and 325 mg acetaminophen) Percocet per night, along with my usual 600 mg neurontin.

The withdrawal period (about 2 weeks now) has been strenuous. I first got only 2 hours sleep and spent the remainder of these nights thrashing with full-body jerks every 10-15 seconds.

I am now Requip-free. I no longer have to fend off RLS all day long.

But I'm sleeping only 4 hours (about 8pm to midnight). Full-body jerks awaken me. I've tried lying on a heating pad, doing gentle leg-stretching exercises, taking a hot bath, and so on. But I finally have to go to bed in the spare room. I move my legs rapidly 20 times, which gets me about 20 jerk-free seconds. Then the feeling starts again so I sort of bicycle my legs another 20 times, and so on. I've tried taking an extra 300 mg Neurontin, but though that lets me doze between jerks I'm extremely groggy in the morning.

I have an appt with a movement disorders specialist in February, but need advice on how to get through until then. Would you suggest that I increase the Neurontin (despite sedation), increase the Percocet, or try something else? I work full-time and have thus far managed not to take any sick time, but this is pretty rugged.

Sharon S.

Medical Reply

You are correct about the Percocet 5/325 designations for oxycodone and acetaminophen. Pure oxycodone is preferred as the acetaminophen has no benefit for RLS. The dose of oxycodone (methadone at the same dosage works even much better but most doctors are not familiar enough with it to prescribe it) that is typically needed in the first few weeks after stopping Requip is 10 mg three times daily. Your dose clearly helped but as you already have experienced was not adequate to control your RLS related Requip withdrawal symptoms.

Increasing the dose of Neurontin at this point is unlikely to be helpful as this drug does not get absorbed very well (as the transporter for this drug get saturated easily) and thus adding more gets only a small extra amount in (but may still cause increased side effects). Lyrica would likely work much better but would take a couple of weeks to get up to speed. Horizant (the new gabapentin/Neurontin drug) also is much more effective and may be effective within a few days.

In the interim, my recommendation to your doctor would be to change to methadone (or pure oxycodone) and increase the dose until the majority of your RLS symptoms are controlled. You can then add Lyrica or Horizant to help reduce your opioid needs.

A Reply from Sharon

Sent: Tuesday, February 15, 2011 4:42 AM
Subject: Could you recommend an RLS specialist in Maine?

I have moderate to severe RLS, with onset about 6 years ago and gradual worsening.

My PCP prescribes gabapentin and ropinirole.

I started with 300 mg gabapentin at bedtime, & currently take 600 mg at bedtime followed by 300 when I awaken (always after 4 hours). I had gone up to 1200 at night but my PCP warned me this was too much.

I started with 2 mg ropinirole at bedtime, & currently take 4 to 6 mg at bedtime followed by zero (when I'm paranoid that it keeps me awake) to 6 (when I'm desperate) when my 4 hours of sleep expires.

I take the meds before dinner (7pm), and am asleep by 8:00 to 8:30 pm. I awaken between midnight and 1:00 am. It takes 60-120 minutes to get back to sleep after taking the 2nd dose. "Knee-knocking" exercises (1000 repetitions) help sometimes.

I get up at 4am when the alarm rings, eat, drive 30 miles, swim laps 60-90 minutes, work 10 hours, drive home, eat, and go to bed.

I am groggy 24/7. My distance vision is deteriorating (possible side-effect of gabapentin?). Would that reverse if I d/c gabapentin? I'm considering getting new glasses.

I've tried cutting out caffeine (1 to 2 cups of tea before 8am depending on my degree of desperation), but have seen no difference on 3-day trials. I've tried skipping my one glass of wine with dinner, but see no effect.

My iron/ferritin level was checked recently and deemed quite high (I don't have the # with me). I had been taking 1 multi-vitamin with iron twice weekly (I'm 64), so I stopped. It was about then that the RLS got even worse, though perhaps coincidental. The RLS had begun 6 years ago when I started menopause and stopped taking iron daily.

I now have that awful RLS feeling in my lower back and legs most of the day, most days. I avoid meds until bedtime as a rule, but if in a confined space (theater, concert hall) even 300 mg an hour before the performance is not enough... I have to flap/vibrate my legs constantly, or else I'll have a full-body JERK every minute or so. If I take another 300 mg I stop writhing, and fall asleep!

Sharon S.

Medical Reply

It sounds as if you are experiencing augmentation (worsening of RLS from taking a dopamine drug like ropinirole). You are already on high doses of ropinirole but increasing the drug will only help temporarily and will ultimately result in an increase of your RLS symptoms. The treatment for this problem is to get off the ropinirole. However, stopping the ropinirole will result in a temporary (a week or two) marked worsening of the RLS symptoms before the RLS returns to baseline levels (approximately to where you were before starting the drug). There are ways to make this a reasonable experience but it does take a knowledgeable RLS doctor.

Gabapentin does cause sedation as a side effect especially at the higher doses that you are taking. Lyrica may be a better choice. It is unlikely that the gabapentin is causing your visual disturbances unless that is due to the sedation effect of gabapentin.

Oral drugs take months or longer to help RLS symptoms so it is unlikely that stopping or starting them will have an immediate actions (especially if your ferritin level is already high).


Sent: Wednesday, December 14, 2011 9:58 AM
Subject: Advice for RLS/WED and potential pregnancy.

I was diagnosed with RLS/WED and PLM about 4 years ago. I was on Requip 1 mg up until about 4 months ago when I switched to Horizant. The Horizant is amazing.... I believe I was beginning to build up a tolerance to Requip because I was becoming symptomatic this past year but the Horizant fixed that.

I am contacting you because my husband and I REALLY would like to have a baby. However, I met with my Sleep Doctor last week (Dr. Patel at Sleep Health Centers) to discuss possible RLS medication alternatives and pregnancy and he was unaware of any safe medication to take during pregnancy that will manage some of my RLS symptoms. He suggested I deal with the symptoms for 9 months or see a Perinatologist. I have scheduled appointments with my OB and a Perinatologist for next week but I am nervous that they too will not be comfortable with any of the possible medications for RLS during pregnancy.

I am a member of the discussion boards at www.rls.org and I have been reading some of the posts and it appears that many OB's and Perinatologists don't really know how to treat RLS in pregnancy and refuse the alternative medications to minimize symptoms. I am worried that I am going to be instructed to stop all medication and I know that stopping the medication will make my pregnancy unbearable. The lack of sleep alone will not be safe for the baby.

Some of the women on the discussion boards have recounted their experiences with methadone and a few have had successful pregnancies with minimal symptoms on methadone under your care. Other women have taken Oxycodone and Ambien during their pregnancy as well. I am open to alternative medications but would love some additional information based on clinical experience or research on what you believe is the "safest".

I was hoping since you are an expert in this field and you have treated women with RLS in pregnancy that you would be willing to send a quick email with your recommendations in terms of medication management in pregnancy that I could bring to my appointments next week. I'm hoping advice from you would serve as, if nothing else, a starting point for my physicians to at least explore alternative medications during pregnancy in case they are inclined to simply rule out medication completely during my pregnancy.

My husband and I really would like to have a baby and I hate to think that RLS will prevent us from attaining this dream. I really don't think I could allow myself to have a baby and suffer, sleep-deprived for 9 months. I feel that the sleep deprivation and stress of the symptoms would be so detrimental to my health and the baby's development, I'm not sure I would want to take that risk. So for me, some clinical knowledge of "safe" medication management would be so helpful.     

Kera R.

Medical Reply

                                                                                                                                                                          
RLS typically gets significantly worse during pregnancy so if your symptoms are fairly bad now (without treatment) you can expect an incredibly tough time while pregnant (especially the third trimester). Horizant is a category C drug and therefore I do not recommend taking it during pregnancy (although I have seen some doctors give their patients category C drugs during pregnancy).

There are few choices but oxycodone and methadone are amongst the best choices due to their safety (in low dose) during pregnancy and effectiveness in treating even severe RLS symptoms. I personally prefer the use of methadone as it works better than oxycodone for RLS, seems to have fewer side effects, lasts longer (8-10 hours per dose compared to 4-6 hours for oxycodone) and there is much more experience with its use in pregnancy (for maintenance use in heroin addicts who actually take much higher doses).

The concerns are fetal opioid withdrawal syndromes and fetal respiratory depression immediately after delivery but in my small series of patients I have had no problems so far (again, this does not assure than others wonít experience problems). As long as the perinatologist is aware of these issues, they can be dealt with appropriately if needed. You are also correct in that the risks of insomnia and your distress from severe uncontrolled RLS symptoms during pregnancy may trump the risk of taking these category B drugs.


Sent: Thursday, December 15, 2011 8:40 PM
Subject: Outgrowing mild childhood RLS

Do children with mild (once or twice a year) RLS have a higher probability of having adult RLS?

Pamela P.

Medical Reply

Unfortunately, they do have a higher probability of adult RLS symptoms. However, it is quite unpredictable what the course of their RLS might be. They may "outgrow" it but then it may come back years or decades later. The severity may also vary considerably as they grow older.


Sent: Friday, December 16, 2011 6:57 AM
Subject: Prednisone worsening RLS?

I just started taking prednisone yesterday since the change in the weather my asthma has been bad my doctor prescribed prednisone for me but every time I take it I get restless in my legs and I have trouble sleeping I don't know what I can do about these symptoms

CR

Medical Reply

Prednisone does sometimes cause insomnia but it is not known to worsen RLS. I have many RLS patients who have taken prednisone, even in fairly high doses without any exacerbation of their symptoms.



























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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.


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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 98.
http://www.rlshelp.org/rlscomp98.htm
This web site was last modified on Friday, December 16, 2011.
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