Patient letters on RLS symptoms and remedies- Page 105

Sent: Wednesday, July 24, 2013 4:20 PM
Subject: Restless leg as a result of withdrawal from fentanyl and opiates

I have been on heavy opiates for 15 years for chronic pain following a burst fracture of my back, 3 months in a body cast, five major surgeries, four rhizotomies and numerous steroid and facet injections. I was up to 300 mg of morphine sulfate per day when i began to question whether I had any other options. a second pain management specialist said that at my age(71), the morphine would cause brain issues and put me on Fentanyl patches, supplemented by morphine. Following another surgery, I realized that something had changed and my pain level was far less severe. I decided to try and withdraw for opiates and over the last seven months I have been attempting to totally withdraw.
Shortly after beginning to taper, I began to get "restless leg syndrome", except it is in my u paper body and goes on most of the night. The result is that I am lucky if I can get thee hours of sleep a night. If it were not for naps and Provigil, I would be a zombie. My treating physicians agree that. The RLS is really withdrawal symptoms from the fentanyl but seem to be unable to treat it. I have been on clonodine and now Requip but with marginal results.

I did get six hours sleep two nights ago but last night the old routine returned and I spent the night pacing. I am finally reaching my limit and am even considering going back to Fentanyl so that i can have a normal life. I am completely off fentanyl and morphine and hate to give up but I am beginning to lose hope.

Stephen H.

Medical Reply

It is more likely that if you have RLS, then you developed it sometime while on opioids over the past 15 years but the opioids masked (treated) your symptoms. Getting off the opioids merely unmasked your symptoms. Typically, RLS starts in the legs before going to other body parts (which may make your diagnosis somewhat suspect) but of course, since you were being inadvertently treated for RLS, we do not know if you had leg symptoms as your initial symptoms.

Clonidine (do you actually mean Klonopin?) is not an RLS drug.

Requip should help RLS but you may have a more advanced case. You should probably see a real RLS specialist as it sounds like the doctors that you are currently seeing lack the expertise for difficult RLS cases.

A Reply from Stephen

Sent: Thursday, July 25, 2013 3:58 PM
Subject: Re: Restless leg as a result of withdrawal from fentanyl and opiates

I just returned from the pain management specialist and he likewise doubts whether I truly have restless leg syndrome. He stated that he found that fentanyl was such a dangerous and unpredictable drug that he only utilized it in cases of terminal patients. He believes that what I'm experiencing is not restless leg syndrome but withdrawal fentanyl.

Assuming that is the case he feels that in another week most of the symptoms should disappear. I also wonder if there are homeopathic remedies for restless leg syndrome since I would prefer to not take any further medication.

Stephen H.

Medical Reply

There are no homeopathic treatments that have any consistent benefits.

A Reply from Stephen

Sent: Friday, July 26, 2013 7:20 PM
Subject: Re: Restless leg as a result of withdrawal from fentanyl and opiates

I wished that I did live in California so that I could schedule an appointment with you. I know realize that what speculated is probably correct and I had RLS that was being masked by the heavy opiates. I have obtained the name of a Neurologist from your website and hope to schedule an appointment the beginning of the week.

Since I live in the State of Washington where Marijuana has been legalized, I am going to try some marijuana tonight to see if it can help. I will let you know the results in the next day or so. Even if it does work, I still plan on seeing the neurologist to obtain a more conventional treatment. Although I was taking Requip, my physician had only prescribed .5 mg. From your website, it appears that I would need a far greater dose to be effective.

Stephen H.

Medical Reply

The short acting dopamine agonists (Mirapex and Requip) often have issues over time so I would recommend discussing the Neupro patch or Horizant (or both together) with your doctor.

Opioids, although used as the last resort, work well when used correctly. The marijuana should help you get to sleep as it quickly relieves RLS symptoms (but may not last that long).

Under proper care, most all RLS sufferers should do very well.

Sent: Friday, October 18, 2013 6:13 PM
Subject: Re: Restless leg as a result of withdrawal from fentanyl and opiates

It has been awhile since I last wrote to you. Since that time, I did try marijuana but it really did not help . After a period of crisis ( five days without sleep), I scheduled an emergency appointment with my internist who agreed that I had a severe case of RLS and prescribed a larger dosage of ropinirole, which has worked. I am still on a Fentanyl patch and occasionally 15 mg of Morphine. I am at least comfortable most of the time and can normally sleep.

I just wanted it thank you again for your help. I can at least live a normal life now. I must admit that I was so depressed that I actually thought that my PTSD (from my service days) had returned and now I seem to be recovering.

Stephen H.

Medical Reply

The only concern with your current new treatment is that although the ropinirole has taken care of your recent crisis with severe RLS, it will likely cause more augmentation (worsening of RLS from taking a dopamine agonist like ropinirole) and sooner or later you will have a recurrence of this problem (which may even be worse). Most doctors do not know of anything else to do so they increase the dopamine agonist which provides temporary relief unwittingly adding fuel to the fire of the augmentation issue.

Treating this problem truly requires an RLS expert well versed in managing severe RLS/augmentation cases.

Sent: Wednesday, July 24, 2013 5:48 PM
Subject: Lyrica, the Angel

I am a 79-year-old male with inherited RLS. Of the three medications approved for the malady, I failed on two. The only one left was Lyrica. It did not work at lower dosages, but after I established a blood level using 100 mg three times per day, the symptoms disappeared.

RLS was torture. I, too, often fell asleep while standing. It affected my legs, shoulders, and the trunk of my body beginning at about 8:30 p.m. each evening. Sleep was virtually impossible until I took hydrocodone. Few physicians want to prescribe a narcotic.

While Lyrica makes me sleepy at odd hours, it is worth the adjustment.

Earl S.

Medical Reply

Once you have failed the first line medications, it is very reasonable to go to the second line ones. That includes both Lyrica and the opioids.

Lyrica at 100 mg three times daily is a moderate dose as patients sometimes go as high as 600 mg daily.

Sent: Tuesday, January 25, 2011 10:42 PM
Subject: hydrocodone/RLS

I was just wondering if being on hydrocodone for an extended length of time due to shoulder surgery's may end up causing RLS? I'm wondering if it is the body growing a dependency for it, mentally I don’t feel like I have to take hydrocodone, I can go with out it no-problem its just at night is when I am suffering from the RLS!

Eric M.

Medical Reply

Hydrocodone actually helps relieve RLS symptoms so it was probably taking care of your RLS symptoms while using it for your shoulder. Stopping it now just takes away your RLS treatment so that symptoms become bothersome. You may have to look into other reasons for your RLS worsening (like other medications – read our treatment page).

Sent: Wednesday, July 31, 2013 11:35 AM
Subject: RLS

I have been experiencing extreme RLS symptoms and some of my meds cause these symptoms. I also have fibromyalgia. I take Neurontin, Mirapex, and tramadol. I have tried a couple of muscle relaxants and robaxin makes me nauseated while flexeril intensifies my RLS.

I really need help and could you suggest a muscle relaxant that might help.

 Georganna

Medical Reply

Muscle relaxant medications do not help RLS and in fact, may make RLS worse.

Sent: Thursday, August 01, 2013 9:03 AM
Subject: Pregnancy and RLS

I have been taking generic Mirapex 0.25 mg for the past couple of years and now I'm pregnant with my first child. My symptoms have become much worse with this pregnancy as its due to my hormones. My OB doctor told me that's it is okay to continue taking the pill if I absolutely have to, but I won't be able to breastfeed on it. Is that true? How long does it stay in your system? Are there any alternatives to relieve RLS without medication?

Mindy S.

Medical Reply

Mirapex is a category C drug for pregnancy and I do not prescribe them for my pregnant RLS patients due to the increased fetal risk. The only drug that I use for pregnant patients is low dose methadone which typically works extremely well (but most doctors are not that familiar with using it and won’t prescribe it).

There are no non-drug therapies that do a very good job for moderate to severe RLS symptoms. The reason for not taking Mirapex during breastfeeding is that it inhibits the release of prolactin from the pituitary gland in the brain and prolactin is what stimulates the production of breast mild (no prolactin = no breast milk).

A Reply from Mindy

Sent: Friday, August 02, 2013 7:37 AM
Subject: RE: Pregnancy and RLS

Thank you so much for the response back. Not exactly what I wanted to hear, but I appreciate you getting back to me. Can you tell me how long the medication stays in your system? I read it should only last 6-10 hrs.


Mindy S.

Medical Reply

Mirapex has a half-life of 8-12 hours (depending upon age) but that has little to do with its effects on the fetus. Each half-life reduces the amount in the body by half. Typically, after 4-5 half-lives, there is not much left to trace in the blood.

A Reply from Mindy

Sent: Friday, August 02, 2013 8:02 AM
Subject: RE: Pregnancy and RLS

ok, thanks again. Sorry but one more question...what possible side effects does it have on my baby? Should I stop taking it during my pregnancy?

Mindy S.

Medical Reply

There are no reports of fetal problems in humans (but it is given very infrequently to pregnant ladies) but it caused problems in rat studies (albeit at higher than typical doses). As a category C drug (where the safety in humans is really not known), I do not prescribe this class of drug to my patients unless I have no alternative and it is critical to use the drug. I do prescribe methadone and have had no problems so far using that drug.

Sent: Monday, August 05, 2013 6:10 AM
Subject: Is there any hope?

My mom is at wits end. Here is a little background. She is 78 years old and has suffered with RLS since she was a teen. Her father and brother also had/have RLS.
She has severe arthritis and has just recently, May 31 and June 18, 2013, had double carpal tunnel surgery as well as double knee replacement surgery. She also suffers with spinal stenosis. She has had an oblation on one side.

She is incredibly active . She is a widow since 2008 and solely maintains her home with a 2 acres lawn and multiple gardens. She doesn't like being on medications as they make her dizzy and slow her down. She was off all of her knee surgery related medicines in less than 4 weeks.

Her regular medicines include Lisonopril-hydrocholorothiazide for blood pressure, Allerclear for allergies, pantoprazole Sodium 40mg for stomach/reflux issues, Cymbalta 60mg for pain associated with arthritis and back pain (she has taken this for 2 years), Mirapex .5mg for RLS and multiple daily vitamins. She takes Tylenol when her arthritis pain is great, but it is not much of a help. She can no longer take Advil (the only med that eased her arthritis pain, and she believes helped her RLS in the past) as it created major problems for her stomach.

In the last 3 years, her suffering with RLS has increased dramatically, and over the last year, it has come on with a vengeance. Many nights, especially since the surgery, she is lucky if she gets 2 hours of sleep in 24 hours. The need to walk and move her legs and arms is constant....now day and night. She will take her Mirapex 2 hours before bedtime, but when she lays down to try to sleep, she is up within 5 minutes. She can't sit to read or watch TV in the evening, only on her feet pacing or just rocking back and forth.

Her primary doctor is a physicians assistant in her small town doctor's office. In September 2011 she was prescribed Requip 1mg one a day for one month, the first efforts to thwart RLS; however, she was not instructed to "step up" to a higher dosage and, after a month with no relief, her prescription was changed to Mirapex, starting at .125 dosage and then stepping up to her current dose of 0.50 mg one hour before bedtime. In a recent follow-up appointment with the pain center, relating to her back problems, it was recommended she come off the Cymbalta immediately and perhaps change back to Requip after being weaned off Cymbalta; however, her physician assistant has recommended changing her back to Requip 2mg, then stepping up to 3mg on day 2 and 4mg day 3 and wait to come off Cymbalta until Requip is in her system. At our request, she has been referred for a sleep study and we have also requested a referral to a neurologist.

We are at a total loss and need help from someone that has knowledge of RLS! (we just found your website and it has been an incredible help already!) She can't possibly function with lack of sleep, dizziness, etc. etc! Can you please offer any recommendations or help to give her some decent quality of life?! Also, how can we actually find a doctor in our area that specializes in RLS?! She lives in Vermont and all we have found for RLS is acupuncturists and the Sleep Center, which we are waiting to hear when we can get an appointment. We would appreciate any direction you can offer us.

P.S. I wrote this letter 2 days ago and did not send. In the meantime, after pouring over your website for help, we have kept her on Mirapex, taken her off Allerclear, begun the weaning process of Cymbalta and, to help her sleep, we gave her 2 Hydrocodone-APAP 5-325 which she had left over from her surgeries. She has had two nights of incredible sleep with no RLS that she is aware of. She only woke once to use the bathroom and then fell right back to sleep with no RLS. Another new questions is if the continuation of Hydrocodone is acceptable before bed to help her sleep or if there is a better option.

Concerned daughter

Medical Reply

Your mother does not need a sleep study for treating her RLS and insomnia problem that has resulted from it.

She most likely has augmentation and needs to be taken off the Mirapex and should stay away from Mirapex and Requip in the future.

The hydrocodone has Tylenol in it (325 mg) and I generally recommend methadone or oxycodone that does not contain Tylenol and she should do well on that alone. Horizant can be added in the future to decrease or eliminate the opioid.

Cymbalta does worsen RLS but Allerclear (like Claritin) does not.

Sent: Tuesday, August 06, 2013 4:33 AM
Subject: re: restless leg syndrome and acidosis

My mother suffers from a terminal illness, called pulmonary fibrosis which affects her breathing. She is also classified as respiratory type 2 failure patient with end stage fibrosis. This means she has trouble with breathing in enough oxygen and also removing enough carbon dioxide from her body. She therefore uses a non-invasive ventilation machine (which also helps for her sleep apnea) to clear out her carbon dioxide during the night, as well as having low level oxygen entrained.

About two years ago, she developed severe symptoms of restless legs, which unfortunately the doctors were not able to diagnose or treat, insisting that this was just part of natural degradation of her disease to the extent that they were about to withdraw all treatment and put her into palliation.
If Mum had a severe nightly episodes of restless legs she would be very drowsy the next morning and in some cases she would end up being confused (indicative of acidosis), which was always detected in the hospital environment, after a poor night without adequate sleep.

Luckily, I intervened and sought a second opinion and she was able to get better. Fortunately, in early September 2012, I also discovered that even on small dosages of ropinirole her restless leg symptoms were gone and since then she has steadily improved and does not have the acidosis which was always present during hospital appointments.

Can you explain the acidosis as I cannot find any physiological reasons for this on my internet searches. Is it because, in Mum's case, the trauma of restlessness and physical activity due to restlessness caused her muscles to fatigue to the extent that lactic acid built up and remained in her blood which could not be cleared on the settings from her ventilator. Clearly, the doctors do not know the answer to this one and the blood gas tests continue to show substantial improvements.

PS Flora
UK

Medical Reply

Unfortunately, there is no known correlation between RLS and acidosis.
Pulmonary fibrosis is a very uncommon medical disease and there is no literature or cases described of RLS occurring with it. Any explanation as to what was causing your mother's problems would be widely speculative.

Your mother's situation however emphasizes yet again that RLS is very often misdiagnosed and treated and that patients and their family members should be proactive and direct their doctors accordingly.

By the way, I am a pulmonary and RLS specialist so if anyone would know what happened to your mother, it should be me and I have no idea.
 

Sent: Tuesday, August 06, 2013 7:52 AM
Subject: L-Methylfolate for RLS?

I am 49 years old, and I have used Requip (about 4 years), and Mirapex (about 1 ½ years). I am beginning to lose the effect of Mirapex at .25 mg.

My primary care physician helps me manage my RLS, and he recently suggested that I try L-Methylfolate, as a script marked as “Deplin”. What is your opinion about this suggestion, and do you know of any recent studies or publications on this topic, that I can pass along to him?

Jeanne W.

Medical Reply

Deplin or any form of folic acid/folate has not been demonstrated to help RLS symptoms. There have only been a few studies but none of them have yielded any beneficial results on RLS.

The more important issue is that you may be developing augmentation from the Mirapex (worsening of RLS from taking a dopamine agonist like Mirapex or Requip) and if you increase the dose you will get temporary relief but the augmentation will continue to worsen. Unfortunately, most doctors do not know what augmentation is and thus have no clue how to treat it. Even most neurologists or sleep specialists (who should know about augmentation) usually are not that knowledgeable on the correct management.

Sent: Wednesday, August 07, 2013 10:16 AM
Subject: Need RLS drugs IV or transdermal or suppository

My digestive system is completely off-line pending repair of large incarcerated hernias. Being fed IV, in Canada. I had been great (RLS-wise) on ropinirole, but apparently that is not available other than oral. Trying Sinemet, crushed, (of course, the regular, not time-release tablets) inserted rectally... Helps but is insufficient.

Morphine: it seems to require a lot, doesn't last long. I get a few hours' sleep from 10-20mg but IV is limited to 2mg doses which take half-an-hour to be administered.

Brian K.

Medical Reply

Most IV drugs are meant for quick relief and will not last that long.

You do have a few choices however. The best choice would be the Neupro patch. It is likely not available in Canada but if you are not too far from an American city, you could get it there.

Another choice would be the lowest dose of the Duragesic (fentanyl) patch. It is a potent opioid that should be used very carefully but it will most likely eliminate your RLS symptoms. However, you may have difficulty getting Canadian doctors to prescribe a potent opioid for any reason and especially for RLS (even though you do not have a lot of alternatives due to your underlying medical problems).

Sent: Wednesday, August 07, 2013 6:03 PM
Subject: RLS and Recent Debilitating Leg Pain

I was diagnosed with RLS about 15 years ago. Mine is so bad that I even sometimes have symptoms in my arms of uncontrolled movements that are super painful. I take three medications to help ease my symptoms, and even then, they don't completely control them. I take these medications two hours before bedtime and they are: gabapentin 900 mg, Mirapex .5 mg, and clonazepam 1.5 mg.

About a week ago, I began having extreme pain in my calves after resting (at any time of the day), and it was especially bad when getting up in the night or upon waking in the morning. This is like nothing I've ever experienced with my RLS. It's so bad that I can hardly walk, and have actually fallen twice. The best way to describe this is to say that are completely locked up. Stretching them doesn't help at all, and hot baths and a heating pad only help a little. I am relatively comfortable while sitting on the couch or lying in bed. It's almost as if I am not having this new problem at all when I'm at rest. It's baffling to me.

I got in touch with my neurologist, who prescribed Neupro patches (1 mg). It didn't even touch the pain or ease the symptoms at all. Then a couple of days ago, he increased the strength to 2 mg, and still it hasn't eased it any. I have researched this medication on the internet, and although it is easy to find conflicting information on any medicine or condition when one does this, most of what I'm reading seems to suggest that this medication is generally only prescribed up to 3 mg for RLS. I called my doctor again and made an appointment for the first available time they have, which is a week from now. My husband is going to have to drive me; I fear that it isn't safe for me to drive if I can't even straighten up to walk two steps.

Yesterday, I resorted to taking Lortab (7.5 mg) three times a day (I currently take this medication as needed for Shingles pain, averaging about one script of 30 a month; I have my good days and bad days). I also tried Flexeril 10 mg, which had been previously prescribed to me for an unrelated condition. The Flexeril seems to ease the pain a bit, but the Lortab doesn't seem to help it at all.

I've not done anything out of the ordinary to put strain on my calves in the last week, and I can't think of any dietary changes that I've made either. Although, if it is worth mentioning, I have had a glass of orange juice every night for the past week. It is not rare for me to drink orange juice; it's just that it's not the norm for me to drink it every night.

Have you ever seen symptoms like this? I'm seriously worried that I am having symptoms of something unrelated that might even be worse than RLS. I'm hoping you can reassure me that you've seen this happen before with RLS, and I'm wondering what some of the most successful means of treatment consisted of, if so?

RLS patient

Medical Reply

From your description, there is a very high chance that you are suffering from augmentation (worsening of your RLS from taking a dopamine drug like Mirapex) of your RLS. The treatment of augmentation is not that well known (or often recognized) even by neurologist who may treat a lot of RLS (even tough RLS cases). Clonazepam is not an RLS drug but rather just helps RLS patients sleep (and there are much better and safer drugs to accomplish that task). Gabapentin has variable and poor absorption and often does not help RLS (there are much better drugs in that class for treating RLS).

Also, adding Neupro (especially for the symptoms that you described) in addition to Mirapex is not something that is typically done for RLS/augmentation. You may want to consider seeing a specialist who is more knowledgeable about treating more difficult RLS cases/augmentation.

The new pain that you are describing does not sound as if it is it is due to your RLS. If the pain is not made better with walking and is not associated with an urge to move when at rest, then it is most likely not related to RLS (and adding Neupro should not be helpful at all).

Sent: Wednesday, August 14, 2013 4:47 PM
Subject: RLS - total body

I am a 40 year old female with severe restless legs. I have tried to find others who experience what I experience when the RLS gets extremely bad... When it gets really bad, I have had the sensation move into my hips, stomach, arms, chest and even into my face. Have you ever heard of this? WHY does my doctor look at me like I am crazy when I explain this phenomenon to him?

I am in sheer misery! I start getting restless sometimes as early as 1 pm. but normally by 5-6 pm if I haven't taken anything, my RLS is in full blown fast paced cha cha mode. Are others like that? Have you ever heard of waking up in the morning, after sleeping all night, with RLS symptoms? It's in the morning that I wake up and will have symptoms up my body. Am I crazy? I truly feel completely alone!

Karrie H. (Not Crazy?)

Medical Reply

The problem that you are experiencing is due to the lack of knowledge about RLS amongst doctors, even ones who treat a lot of RLS cases. RLS can occur anywhere in the body including the face. Until a few years ago, it was thought that the face was exempt from RLS symptoms until I published an article with a few of my patients who have RLS facial symptoms (like you).

When RLS is severe (like your case), it often starts in the morning.

You are not crazy. You simply have not seen the right doctor. With proper treatment (available unfortunately from only a few really good RLS specialists), you should be able to get complete relief.

Sent: Friday, August 23, 2013 6:14 AM
Subject: RLS problems

I developed restless legs from taking Paxil about 12 years ago. After putting up with it for about 9 years, I tried Klonopin and amitriptyline with no success. Then the doctor put me on Mirapex, and it has worked very well for RLS. Unfortunately, before I started with Mirapex, I had sinusitis, and it seems that the Mirapex causes nasal congestion. Perhaps this worsened the sinusitis, because within the next six months, I developed asthma. I also gained 30 pounds. At the time, I did not connect these conditions with Mirapex.

After trying many things to lose weight, I thought I would stop the Mirapex to see if it was causing weight gain. Unexpectedly, after only one night without it, I noticed that my asthma disappeared! My sinuses cleared and I could breathe without an inhaler. But unfortunately, I couldn't sleep, so I went to the doctor and she put me on Requip. Sadly, after only 2 days on Requip, I need my inhaler again - it seems to cause nasal congestion/sinusitis, which may be the reason for the breathing problems.

I have noticed that after stopping Mirapex that my cravings to eat all the time diminished. So far they have not returned with Requip, but my dose is still fairly low (.75 mg). I realize the lessening of food cravings could be a placebo effect, and only time will tell.

My doctor says she knows nothing about RLS and was skeptical about the disappearance of my asthma and cravings. I have another appointment in about 2 weeks, and I will be asking for a referral to a specialist. T

I wonder if you could recommend an alternative to dopamine agonists that I could try. Besides Requip (.75mg) I currently take Cipralex (20mg), and Advair. Perhaps Halcion or Ambien would work? Can I take such meds over the long term?

Jennifer D.

Medical Reply

Although worsening of asthma is not a very common side effect of Mirapex. However, you are correct that when nasal problems are worsened (which does tend to occur with dopamine agonists like Mirapex), it is possible for asthma to also worsen.

The eating problem that you have with Mirapex is a side effect called Impulse Control Disorders (ICD) that is well known to occur with dopamine agonist drugs. It will likely also occur with Requip if you get the dose high enough (Requip is only about ½ to ¼ as potent as Mirapex). Due to this problem, you should avoid the dopamine agonist drugs.

Although drugs like Halcion or Ambien may help you get a little more sleep, they will not alleviate your RLS symptoms. Part of your problem is likely due to the Cipralex (called Lexapro here in the USA) which most often worsens RLS symptoms (just like Paxil).

You most likely need to get off Requip/Mirapex but that often requires opioids which are very hard to get n Canada. Drugs like Lyrica or gabapentin may also be helpful but may not be able to get you off Requip/Mirapex but they may help decrease your RLS symptoms somewhat.

A Reply from Jennifer

Sent: Saturday, August 24, 2013 3:29 AM
Subject: RE: RLS problems

Which opioids would you recommend for getting off Mirapex/Requip? I can see about working with a specialist and perhaps getting a prescription for a drug that may be a controlled substance here in Canada - if I only need to use it for a few months, it may be possible, depending on the opinion of the specialist. There may be a doctor at the Royal Ottawa Hospital or the Ottawa Hospital who can help me.

Jennifer

Medical Reply

When stopping Mirapex or Requip, the RLS symptoms will dramatically worsen (it is likely that you have experienced this already when missing a dose of your drugs) for a few weeks to a few months. Typically, only the potent opioids (oxycodone, methadone which I prefer) are needed and it is fairly unlikely that most Canadian doctors (except for pain specialists who may not prescribe it for RLS since they don’t know RLS at all) will prescribe them. Furthermore, these drugs may be needed indefinitely.

Sent: Sunday, August 25, 2013 2:53 AM
Subject: Horizant

I have decided to discontinue Horizant because of side effects (extreme sleepiness during daytime). However in days following it has been very difficult to treat RLS. Symptoms similar to the augmentation I had from Requip/Mirapex such as RLS affecting arms and shoulder as well as more pronounced RLS symptoms in legs.

The oxycodone I take provides little relief or takes longer to kick in and doesn't seem to last as long. Can I attribute these symptoms to withdrawal from Horizant or could it be something else?

Jim D.

Medical Reply

Horizant (or any of the drugs in the same class of medication) has never been associated with augmentation. It is more likely that the Horizant was treating your RLS symptoms fairly well (despite causing sleepiness) and stopping just leaves you without adequate treatment for your RLS. The Horizant can make the oxycodone work better and make it seem like significant withdrawal symptoms are occurring when stopping it.

An alternative choice would be Lyrica (which acts on the same receptors as Horizant) but does not have as long an action. Therefore, it should not cause next day sleepiness.

Of course, it is also possible that something else may be triggering your worsening RLS symptoms but if this just occurred with stopping Horizant, then I would not pursue looking for alternate explanations.

Sent: Tuesday, August 27, 2013 6:04 AM
Subject: RLS: Oxy to methadone

As you have stated a few times in your Q&A's that methadone might work better than oxycodone for RLS even on a slightly lower dose I would like to give that a try and talk about it with my doctor. I take 5 mg OxyContin at 7 pm and 4 mg OxyNorm (liquid formula) at 12:30 am (together 9 mg daily).

Could  I just change to methadone without titrating and would you agree that a dosage of 7.5 mg methadone totally, taken in 2 doses, would be a good idea to start with?

Maria

Medical Reply

It is difficult to predict the exact equivalency of drugs in any individual as the numbers we use work on the average (and we do not see that average person very often). However, the doses that you have noted would be a reasonable place to start then adjust up or down as needed. The only titration that would be necessary would be to adjust the dose as below to alleviate the symptoms.

Since methadone is much longer lasting than oxycodone (8-10 hours per dose compared to 4-6 for oxycodone which is one of the reasons that I prefer the use of methadone), you might be able to get away with taking just one dose (the entire 7.5 mg) at 7 pm without even needing an additional dose (but again, only trial and error can determine that issue). Otherwise, you could split the dose in any way that works best for you.

Sent: Tuesday, August 27, 2013 10:44 AM
Subject: escalation and holiday

I am 57, and I am a 20 year RLS victim, and most recently am experiencing what seems to be escalation in the symptoms and frequency. I have episodes every single night that lasts for at least 4-5 hours. I am currently on Requip which has been very successful until recently when I've noticed that it takes as much as 2 hours for it to take effect.

In regard to 'drug holiday', I'm thinking of asking my family doctor for a prescription to Mirapex. Is Mirapex the best option to 'substitute' or 'holiday' from Requip, or are they of the same family, and thus would not satisfy my body's call for change ?

SN

Medical Reply

The problem that you are having with Requip is much different than you realize. You most likely are experiencing augmentation from Requip (worsening of RLS from taking a dopamine agonist drugs like Requip or Mirapex). Taking a drug holiday might help this problem but restarting the medication (or likely any other dopamine agonist like Mirapex) would very probably reestablish the augmentation issue fairly quickly.

Furthermore, stopping Requip will make your RLS go into “hyper drive” for several weeks or months with symptoms that are markedly worse (if you have ever forgotten to take a Requip pill on time, you should know what I am talking about).

The treatment of the augmentation problem is quite complicated (typically beyond the expertise of most primary care doctors and often even many specialists) which you can easily reference by checking the many letters on this topic on our website.

Sent: Thursday, August 29, 2013 7:01 PM
Subject: RLS not doing well with Requip

My symptoms are a little different…I think. At night or any other time that I get calmed down and try to rest, read or watch TV etc. I get this feeling almost like electricity going from the core of my chest down through my legs. I cannot hold still. I have to move, shake my legs or walk, jog jump or something to get it to stop. As soon as I get calmed down again it comes back. I feel like I'm in that movie where the bus had a bomb on it and it would blow up if it slowed down. I have to keep moving.

My doctor put me on Requip (ropinirole). It helps after a couple of hours but then the symptoms come back worse. I use to get these feelings when I would go to bed and start to fall asleep. Now I get them anytime that I calm down and the symptoms are worse. One night I had run out of medicine and ended up in the emergency room. The doctors just keep increasing the dosage. I was always very healthy and fit. Now my life is a night mare. What is wrong with me? Are there doctors who can help? I cannot take this much longer.

William S.

Medical Reply

Your problem is actually very straightforward. You have developed augmentation (worsening of RLS symptoms from being on a dopamine agonist drug like Requip that treats it-you can read about it in the many letters on our website on this topic) from Requip. Each time your doctors increase the Requip dose, you will get a short period of temporary relief only to find that ultimately the RLS symptoms get more intense, occur more readily and earlier in the day and may even spread to other body parts.

However, the treatment of augmentation is not so straightforward. Most general doctors and unfortunately even most specialists (like neurologists and sleep specialists) typically do not know how to treat augmentation properly. If you can find a real RLS specialist, you should have little or no problem getting complete relief from your RLS symptoms and have no need to keep increasing your medications. Unfortunately, it may be difficult to find the true RLS specialists with adequate expertise.

Sent: Friday, August 30, 2013 6:29 PM
Subject: Treatment that i am trying for RLS

I have had RLS as long as I can remember, as a very young child. I am 38 now. I have been living in hell. My doctor started me on 50 mg of Trazodone to help me sleep. It helps me fall asleep but after about 4 hours I would get restless. Then he took me off trazodone and put me on 300 mg Neurontin and it did nothing for me so I added the trazodone with the Neurontin and it was not 100% but was somewhat better. Then he took me back off of the Neurontin and put me on 100 mg trazodone.

I fell asleep fast last night but only slept 4 hours and I have been awake for 22 hours and can’t sleep. Should I go back down to 50 mg of Trazodone and take a higher does of Neurontin? And if so, what dose of Neurontin?

Tammy

Medical Reply

The issue is that your doctor is treating the insomnia associated with RLS, not the RLS. Trazodone does help RLS symptoms but rather just promotes sleep (similar to the situation if back pain was preventing you from sleeping). Neurontin (gabapentin) may improve RLS symptoms and sleep but it is a very erratic drug due to variable and limited absorption problems.

You would do much better on Horizant (turns into more effective gabapentin levels in the body) and/or Neupro. These drugs should help eliminate all your RLS symptoms in which case sleeping should be much easier for you. You may need to see a doctor who is more knowledgeable about RLS.

Sent: Monday, September 02, 2013 7:06 AM
Subject: Restless legs and celiac disease?

I am just wondering if there is a connection between the two?

Lynn H.

Medical Reply

There are a few articles that suggest that RLS may be more common in various bowel diseases and even more specifically with celiac disease. The reason for this is not known.

Sent: Thursday, September 05, 2013 3:04 PM
Subject: Chronic and Severe RLS in 93-year-old

My almost-93-year-old mother has had the condition for 40+ years and has tried every drug under the sun. Yes, she reached augmentation after taking Sinemet and Mirapex for years. She has taken oxycodone over the years in order to get any sleep, and is to the point where it is now the only medication she takes which is now 'round the clock, with the accompanying side-effects of constipation, no appetite and depression. For the depression a psychiatrist prescribed Lexapro recently, which made her horribly nauseated. After I looked up other options on-line, her regular physician prescribed Wellbutrin which has calmed down the nausea.

However, she still has no appetite and has to force herself to eat small bits of food and a little Ensure. I did ask her to ask her doctor about Abilify as I had seen it mentioned in relation to RLS in my perusing of the internet, but he gave a reason (which I've forgotten!) as to why it would not be good for her. I live in another state and get doctor appointment info from Mom and from the sister who takes her to her appointments.

Is there anything at all you could suggest that would allow her to get off so much oxycodone? It seems to be causing most of her problems. She did try the Neupro patch earlier this year in a couple of strengths, but while it worked great at first, the good effect only lasted a week or two. Poor woman, she's so miserable. Her health is otherwise not too bad for her age, though her kidney function is less than ideal.

Erin

Medical Reply

Lexapro may be good for her depression but may also worsen RLS. Wellbutrin is RLS friendly so that is a good choice. If she still has nausea, Zofran should help and does not worsen RLS.

It is quite possible that methadone (hard to get this prescribed) might work better than oxycodone with fewer side effects (it is worth discussing this with her doctor).

If she has not already tried one of the alpha-2 delta drugs (gabapentin, Lyrica and Horizant) then they are certainly worth trying and have a good chance of decreasing the amount of opioid needed to control her RLS. However, they are all eliminated by the kidneys (so lower doses should be used in your mother) and may cause some sedation.

A Reply from Erin

Sent: Thursday, September 05, 2013 6:02 PM
Subject: Re: Chronic and Severe RLS in 93-year-old

Yes, the Lexapro worsened her legs as well as made her very sick to her stomach. She continues to take Zofran in the morning as she still wakes up queasy, probably from all the oxycodone.

My sister is strongly reluctant to ask for methadone for her as it stays in the body so long, especially in the elderly. (She used to sell--legally!--OxyContin and so has done much reading on narcotics.)

Mom did try Gabapentin and it made her very depressed, as well as not helping much. Do you have much anecdotal experience with patients using the Neupro patch? I have read of others hitting on a cocktail of drugs and wish she could find one as well but so far, no luck. Do you have any elderly patients who have severe RLS? I do wish she lived in LA at this point! Her doctor is willing to try different ideas for the most part, but like almost all doctors, he doesn't seem to know a lot about RLS.

Erin

Medical Reply

Although your sister is correct about the methadone lasting longer it often has fewer side effects so the longer lasting effect mostly takes care of the RLS symptoms for longer without causing as much trouble as other opioids. However, the benefits of methadone may vary somewhat from patient to patient and it is certainly possible that you mother may just have the nausea for a longer interval on the drug (only trial and error can determine that issue).

Lyrica may be more effective than gabapentin but its effect on depression is harder to predict (although I would be cautious as it works on the same receptors as gabapentin).

I do use the Neupro patch a lot and in combination therapy quite often. However, I use it only when it has at least some positive effects on RLS then may add other medications to complete the RLS control. Since the effect of the patch was short lived for your mother, adding it should not provide any long term benefits.

Sent: Wednesday, September 11, 2013 10:30 AM
Subject: Worsening of RLS after surgery?

I have had RLS for many years. My grandmother used to call it having the Magrams. I don't know if it was her own term or medical but now I know what she meant. I wonder how she dealt with it in those days. Usually I am able to sleep after stretching exercises when I feel the symptoms but about once a month or so, I needed to take Requip which works fine.

Six weeks ago I had a partial knee replacement and since then the symptoms have been too severe for the stretching and I must take the Requip. I am wondering if the surgery or the anesthesia has made the difference and if so....will it get better with time?

I hope you can solve this for me.

Shirley F.

Medical Reply

Worsening of RLS after surgery or trauma is a very common phenomenon. It is not understood why this occurs and it has not been formally studied (or reported in a medical journal article) yet many RLS sufferers report similar stories. Unfortunately, most patients who have their RLS triggered or exacerbated by surgery continue to experience this problem indefinitely.

Sent: Thursday, September 12, 2013 12:58 AM
Subject: Request for advice on very severe RLS

I am a patient of a neurological group here in Florida and prior to that saw a neurologist for many years for treatment of what all these parties claim is the worst case of RLS they have ever been witness to. I have had MRIs, but now have discovered that the dye contrast used in the IV portion of this causes deep vein thrombosis and I am on Coumadin for the rest of my life. I do have some sort of blood disorder that is genetic and is not worth taking a chance to discover what xyz123 is the cause of this because I would be required to discontinue the Coumadin for a period of time in order to have this test run in the lab and the result would not help me in any way.

When I was in grammar school I had several episodes of what I would call normal RLS during the night. I am 65 now so this was many years ago. I was told I was having growth spurts and it would go away. Off and on through the years I was bothered however not to the point where I was losing sleep and suffering because of it. In 1969 following the birth of my daughter when she was 5 months old I had a stroke and developed blood clots throughout my system followed by emergency exploratory abdominal surgery. The end result was I lost all but 4 or so feet of small intestines, a tiny portion of my stomach, and muscle tissue – gangrene tissue removed due to the clotting and a wonderful surgeon saved my life after many hours in surgery. I had blown out a portion of my brain leaving only empty space – well now filled with fluid. This is on the right side and leaves a hole that ends at the brain stem. I had no speech and some weakness in one leg and arm. I have regained all my speech and have worked at perfecting it through the years although I have lost completely the ability to perform much simple math. I learned to drive and following a move to Florida took up SCUBA diving – later discovering I should never have done that.

Fast forward…..I worked for the Federal Government for 20+ years both in Denver, CO and here in Florida. The last years here were pure hell because of the RLS returning with a vengeance – having to be at my desk by 6 AM – no sleep – I was a zombie. When offered an early out I took it and retired. I find now that I must run on my schedule or I would probably already be dead. This RLS not only involves my legs but my arms, torso, and for the past 5 or more years my neck, head, tongue and vocal cords. My joints ache from being thrust out at odd angles for hours at a time. I am allergic to may medicines and must being with pediatric doses and even then find I cannot take them. At the moment I am taking Tussionex which is a cough medicine used for severe cases of Bronchitis or other coughs that need night time treatment. I had bronchitis and was given a script of that only to find this horrible RLS went away and I got some sleep. The Doctor willingly prescribed this for me for the past 12 years to give me some peace. I still have to sleep on my own schedule which is 4 AM to approximately 9 or 10 AM. I am happy that way. I realize all the danger of taking this medicine and the fact that it could kill me at some point. I have never abused it and at times stopped taking it all together.

My neurologist/sleep specialist has run two sleep labs and I am on CPAP. I can stay on that device as long as I am not suffering from the horrible affects of this “jerking” disease. I was told it would most likely go away with the CPAP use – it is not working that way. I will not use Neupro because of the danger it presents such as suddenly falling asleep with no warning. I have a handicapped daughter so not only would I be placing her life in danger but others on the road and I am her transportation. That would be crazy of me to even think of. At times I feel I have Tourettes due to the facial involvement. I can control the movements during the day by putting pressure on my joints, leaning forward in a chair which adds pressure to my feet, ankles, knees, etc. I also lean on my elbows and wrists so nothing jerks as my arms would fly off the chair and out to the side at times. I can feel that coming on and an urge to move, other times as with my facial movements, my tongue or vocal cords tighten up and sound comes out without my being aware it is going to happen. That has only been at night or if I am in bed ready to completely relax.

Not to make this any longer, I leave you with this information. Do you know of anybody else with RLS to this degree? The doctor is about to put me on methadone as a trial. I just read about this medication and from what I read, no one really knows what they are doing with the dosage – it can be too light so results are negative – no relief from pain or other and if too much given I believe there have been deaths. I will be sent to a pain clinic for this and am really reluctant to even make an attempt. I am not a normal patient – healthy other than the RLS – I am not. I’ve had this horrible illness, surgery, diabetes, - and I have neglected to say that my RLS is made many many times worse by physical activity. Even light activity causes me to be exhausted and experiencing several nights of nonstop jerking to the point where I have thrown myself out of bed.

Denise S.

Medical Reply

Your RLS is clearly very severe. However, I do have patients with RLS that is actually considerably worse than what you describe. RLS usually does not travel to the face/head, but I have had several patients with this phenomenon.

The Tussionex contains hydrocodone (the common ingredient in Vicodin, Norco, Lortab, etc.) and chlorpheniramine (an antihistamine found in products like Chlor-Trimeton). The antihistamine is actually one of the list of medications that worsens RLS, so it may be reducing the effect of the hydrocodone. Therefore, it is actually a good idea to consider a change to methadone which contains no other products (like most of the pain pills or cough syrups) and is one of the best treatments for refractory RLS. Your concern about dying from Tussionex or methadone is unfounded as long as you stay on the dose that you are prescribed and that dose is maintained at the lowest effective dose.

The only issue is that pain specialists know virtually nothing about RLS and may not be the best specialty to manage your problem. You may want to seek out a real RLS specialist who can manage all aspects of the disease. You should have your serum ferritin checked (very sensitive test for low levels of iron in the body) as that may lead to other therapies.

Neupro may cause sedation, but that only occurs in a few percent of patients. The vast majority of patients do not have this issue and it still may be worth a trial (you can take it on a day that you have friends/family around to help with your daughter) for a few days.

With proper treatment, most all RLS patients should lead normal pain/RLS free lives.

Sent: Thursday, September 12, 2013 11:20 AM
Subject: RLS and Surgery

My mother-in-law suffers from severe RLS and is on PRAMIPEXOLE for her symptoms. She has had surgery in the past and both times, she had terrible attacks of RLS during and after the procedure. She is having cataract surgery in a month and is absolutely terrified that she will have RLS while the surgeon is working on her eyes.

We have read that she should request ZOFRAN for the anti-nausea medication during surgery. Would you suggest the same or have other suggestions?

Cristy V.
Wylie, Texas

Medical Reply

Zofran is a very reasonable medication if nausea occurs or needs to be prevented secondary to surgery or any other cause.

They main issue here is to prevent the eye doctor and anesthetist from administering any drugs that worsen RLS. As such, you should print out several copies of the RLS Medical Alert Card (which can be downloaded for free from our website) and give a copy to every doctor that will be taking care of you.

Sent: Thursday, September 12, 2013 8:01 PM
Subject: RLS AUGMENTATION

I am glad I found your website!

My RLS started about 3-4 years ago, and my nephrologist suggested Mirapex, which for the first month was just wonderful – take one .125mg pill at night, and have no symptoms for more than 12 hours, plus get a good night’s sleep.

THEN, the augmentation started. There are other side effects: itching, my toes have not felt the same ever since I have used Mirapex (or Pramipexole). Therefore, I keep Mirapex to an absolute minimum – one 0.0625 dose every other day. Because I am also CKD stage 3, I am doubly careful, because I want to avoid dialysis at all cost.

My family doctor feels I should not have more than two 30mg Codeine per night, which I take during the night in 15mg doses when the RLS gets too bothersome (he does not want me to become addicted – concerning my age, I am a Super-Senior). I lost most of my natural ability to fall asleep when I was prescribed Letrozole, which did mention sleeplessness as a possible side effect. As soon as I noticed that I could no longer fall asleep, I immediately stopped the medication, assuming it would only be temporary. However, it is permanent.

Therefore, my huge problem is getting some sleep! I was prescribed trazodone, Immovane, lorazepam, and I asked my doctor for clonazepam, all of them .5 mg. No success!

So, I walk a lot during the night, and after each dose of 15 mg Codeine I do get a little bit of sleep. I used to fall asleep at 5 a.m. after the last dose and not wake up until 9 a.m. in the morning – but not anymore. What do you suggest?

Suffering Sarah

Medical Reply

Although one of the 2 best new drugs (Horizant) is not available in Canada, Neupro recently (April) became available there and would be a very good choice to try. It is similar in its action to Mirapex but it is a patch that provides a smooth steady dose of drug treatment.

Another choice would be low doses of opioids like methadone, but those drugs are very difficult to get prescribed in Canada.

A Reply  from Sarah

Sent: Friday, September 13, 2013 12:09 PM
Subject: RE: RLS AUGMENTATION

Does Neupro also produce augmentation? It is my enemy No. 1.

Suffering Sarah

Medical Reply

Although Neupro is a dopamine agonist, it appears to have much less of a concern for causing augmentation. In the 5 year studies (the longest we have so far) most all of the significant augmentation with Neupro occurred with the 4 mg dose which has not been approved to treat RLS. There were some mild augmentation cases with 1-3 mg, but patients did not have to stop their medication. In general, when the augmentation does occur with Neupro, it seems to be a kinder, gentler issue that does not cause the type of stress that results from taking the short-acting dopamine agonists.

Under proper care, the vast majority of RLS cases (and certainly ones like yours) should get virtually complete relief from their symptoms and live normal, happy lives.

Sent: Friday, September 13, 2013 11:51 AM
Subject: Myoclonus at Sleep Onset

For many years I have been struggling with involuntary movements that wake me up just as I start to drift off to sleep. It rarely affects my entire leg. It usually occurs at the ankles, shoulders, neck, face, jaw, or wrists. Occasionally there will be a more violent kick, but it is very unusual. So far, the only medications that have worked to suppress these movements have been Klonopin and clonidine. Unfortunately, there is only so much clonidine I can take at bedtime to prevent the movements, and I habituate to Klonopin rapidly, making that drug unsuitable, as well.

I've read that sometimes sleep onset jerking can be a sign of underlying RLS. Could a drug such as Mirapex help? Are there other medications that could provide relief? I'm very desperate for a solution.

Amy A.

Medical Reply

It sounds like what you have are called hypnic jerks. They are a fairly common occurrence but usually happen once in a while. Some people get this much more often and a few (unlikely ones) may have this on a nightly basis and quite severe. There is no real treatment for the jerks. Klonopin may seem to help them but may just put you to sleep quickly so that you don’t notice them. As such, a much safer and much less addictive drug would be Ambien. Clonidine has never been studied to treat hypnic jerks so I would not prescribe it for that purpose.

Mirapex and other RLS drugs have to role for treating hypnic jerks.

Sent: Saturday, September 14, 2013 11:17 AM
Subject: Wondering if Atripla could increase RLS?

I recently was exposed to a substantial amount of blood and my doctor put me on a 30 day course of Atripla. I also told him that my RLS was really creating sleep issues and he put me on ropinirole, and my RLS seemed to immediately get worse. Any ideas on this?

Donny H.

Medical Reply

There is nothing in Atripla that should worsen RLS. Ropinirole helps most all patients with RLS and only a very small percentage of patients either do not get better or even worse (very small amount). It is possible that you are one of those unusual RLS patients who have a paradoxical response but that response puts into question whether you do indeed have RLS.

Sent: Thursday, September 19, 2013 5:23 PM
Subject: Tramadol dosage

I have suffered from RLS for years and after trying many medications, found that Tramadol worked wonders for me. I have taken it for five years. I have never taken more then 150 mg per day. Recently I noticed the sensations coming back before the twenty four hour period. I have heard this is normal and I would need to increase dosage. I used to take gabapentin with it. Would it be beneficial to go back on a low dose of that rather then up the dose of tramadol?

Peggy L.

Medical Reply

There are a few issues with respect to your case. Normally I would just advise you to continue on your current tramadol or increase the dose a little. However, tramadol is the only other medication besides the dopamine agonists (Mirapex, Requip) that can cause augmentation of RLS symptoms. As there is a reasonable chance that your symptoms indicate that you may be developing augmentation, increasing the tramadol might give you temporary relief but ultimately result in worsening RLS.

Gabapentin may be a reasonable choice but most patients do not absorb this medication that well so Horizant (or even Lyrica) are preferred. It may also be necessary to get you off the tramadol.

Sent: Tuesday, October 01, 2013 7:23 AM
Subject: My RLS story

I'm male, 35 and suffered with restless legs (and hands) for about 5 years - worse than normal pain the constant electrified crawling pressure of restlessness. I didn't know it was a recognized problem until searching the internet. I saw my GP who arranged for iron and liver function tests. Nothing was abnormal and I spent most nights rolling my feet on any curved hard surface - rolling pins, tennis balls, stairs, balled up socks. I even bought a tens machine and foot massager. The only thing that worked was cocodamol, two before bed. I did this for 3 years before it stopped working. After lots of back and forth and no luck with Ropinirole

I convinced the doctor to prescribe tramadol 50mg one before bed - GPs are loathed to prescribe any form of painkiller or sleep medicine in the UK, I practically had to beg admitting that I'd taken one belonging to a friend and it worked so well! This worked wonderfully over the next few months but ended up augmenting the symptoms. The next thing I knew I was breaking open a capsule so I could take half at noon until my regular 50mg before bed. I never went above this dose but I was left feeling furtive and like a drug addict, never going anywhere with out a few capsules in my wallet or jacket pocket; and woe betide me if I ever forgot to take them with me if I ever went anywhere for more than a few hours.

Last week I went to the doctor with symptoms of depression, not altogether unrelated to the constant need to micro manage my tramadol dosing and the constant heavy legs and lethargy which I can only assume was caused by the worsening RLS and/or the tramadol itself. The GP gave me Cymbalta and I was concerned the two drugs would interact and so I tried the first day to miss the mid day half dose of tramadol. 30 minutes after the first dose (60mg) of Cymbalta the restlessness in my legs faded into nothing. It retuned in the evening but over the last four days I've been able to take my 50mg tramadol later and later and yesterday only took half a capsule. I really hate tramadol and how it has a tendency to make one want to increase the dose. It's 3pm on my 4th day of Cymbalta and I have no restless crawling heavy legs at all and my last tramadol was well over 12 hours ago. I really hope this new drug is the cause of the improvement and means I can stop the tramadol altogether.

I know people often talk of taking up to 400mg of tramadol and I can only imagine how hellish this must be to stop. However any amount of this chemical I think causes a worsening of the symptoms it's given to alleviate.

I hope this account chimes in with someone else. It's odd as Cymbalta isn't for RLS but I can't explain the diminution in symptoms, the only other thing I take is Chlorella.

Simon

Medical Reply

Although it sounds like you have RLS, not responding to ropinirole and improving with Cymbalta (which typically worsens RLS) makes the diagnosis of RLS somewhat suspect.

However, if you do have RLS, then tramadol is the only other drug (other than the dopamine agonists like ropinirole and pramipexole) that can cause augmentation (worsening of RLS by a drug which then requires more of the drug to treat the symptoms). You may want to consider gabapentin or Lyrica (works better) which may help you further reduce or eliminate the need for tramadol.

A Reply from Simon

I had actually considered peripheral neuropathy as Cymbalta is approved for that in the UK.  It's a real mystery I wish I knew the answer as I agree there is no reason the antidepressant should improve the symptoms.  I may try Lyrica if things don't continue to improve or worsen again.

Simon

Sent: Friday, October 04, 2013 8:52 AM
Subject: Question about WED/RLS apparently triggered by allergies and anticonvulsants

I have had WED/RLS for more than 15 years, but was always able to control my symptoms with iron supplements. Originally, my issues were stereotypical RLS in my legs.

I also have had very severe respiratory allergies and mild asthma all my life and I am only able to "live" with a combination of antihistamines (currently Zyrtec), nasal steroids (Nasonex) and Singulair. My allergist describes me as one of her most severely allergic patients, but also considers me a success story since I am far better off today than when I first started treatments.

About 5 yrs ago, I started seeing a neurologist for help with treating the migraine headaches that were triggered by my sinus issues. She put me on topiramate, which went well until the start of the next seasonal allergy season. At that point, I started getting what I now know were WED issues in my arms and body every night at bedtime. This was causing severe insomnia and sleep deprivation, so she also gave me Lunesta to allow me to sleep. My upper body WED does not include any pain or the skin sensations that I had with my legs, but the compulsion to move and curl up into a ball was overwhelming. During this period, I did not notice a return of the classic RLS to my legs, but I know that I was moving my ankles and feet almost any time I was seated.

Once the pollen levels subsided, so did my WED symptoms. However it took another year (two pollen seasons) before I was able to convince myself that the two were linked. I discussed my symptoms with my neurologist, my allergist and my GP and none of them made the connection to WED. They were just concerned my ability to sleep and how well the Lunesta worked.

Earlier this year, I insisted that my neurologist switch me from topiramate to something else because my ability to find proper nouns while talking or writing was becoming intolerable. She switched me to Zonisamide, which seemed to be just as effective for my migraines and fixed the speech issues.

However this fall, even the Lunesta wasn't able to override the WED issues and allow me to sleep, so I knew something else had to be done about my insomnia. It was only when I sent myself to a sleep doctor for testing that they sort of made the connection. I was diagnosed with PLMS and treated with 0.125 mg Pramipexole. With the first dose (2 weeks ago), my afternoon and evening WED problems in my arms and body disappeared. Since then, there are days when I feel mild WED symptoms in my arms in the early evening, but it disappears just as soon as the Pramipexole kicks in. Other days, I am symptom free until I take the next dose. I should also add that we are currently at the peak of the local pollen season for ragweed, my worst allergy.

I have seen a number of comments on the bulletin board about how some antihistamines can trigger RLS, but fortunately I have not taken any of those products for years because most were just not effective for me.

Do you have any idea why my more severe issues seem to be triggered by the combination of an anticonvulsant and the higher histamine loads during allergy season? During the summer and winter, these same drugs rarely trigger any problems?

Finally, I am still waiting on the results of the blood work with my ferritin level.

Stephen S.
The Woodlands, TX

Medical Reply

It is difficult to figure out why the allergies worsen your RLS as that is not a common problem. It is possible that any stress (such as being bothered by allergies) might increase RLS in a non-specific manner. The anticonvulsants typically do not worsen RLS so that should not be an issue.

Zyrtec does cross the blood-brain barrier somewhat so may worsen RLS (I have had several such cases) but in that case, it should have been an issue whenever taking it. Allegra and Claritin do not enter the brain so are usually completely RLS friendly.

To avoid problems with augmentation in the future, you should try to keep your pramipexole dose as low as possible.

Sent: Saturday, October 05, 2013 1:26 PM
Subject: Personal Experience with Horizant and Gabapentin

I am 65 years old and have severe RLS. I had augmentation with both Requip XL and Mirapex. My doctor then prescribed Horizant and doubled the dosage to 1200 mg because the original dose was not effective. Before I could try it, Horizant was temporarily unavailable due to the change in manufacturer, so he prescribed regular Gabapentin 600 mg tablets. At first one in the early evening, followed by another if I awoke in the middle of the night with symptoms, did the trick. Recently, I have needed 3 or 4 tablets to get relief.

When Horizant became available again, I tried the 1200 mg (2 tablets) dose, but breakthrough symptoms appeared within 4-5 hours, so I had to take Gabapentin to get to sleep and usually another in the middle of the night. I suppose Horizant's extended-release format doesn't deliver enough gabapentin to alleviate my symptoms. I am not planning to try 1800 mg of Horizant because on 1200 mg I can't function the next morning--dizzy and groggy.

TLC

Medical Reply

Typically, Horizant and gabapentin are not potent enough to treat augmentation so you have actually done better than expected on those drugs but have not yet achieved adequate relief. There are a few options at this point. You can add a small dose of an opioid (methadone, oxycodone) which will dramatically help relief the RLS symptoms and enable you to lower the Horizant dose (and help decrease the next morning fuzziness). Another option is to add a low dose of Neupro (1 or 2 mg) which should also help reduce the RLS symptoms and Horizant dose but might add a very small risk of augmentation.

Sent: Monday, October 07, 2013 3:26 AM
Subject: Mirapex

Mirapex did not work for me when I used it as prescribed at bedtime. A fellow sufferer suggested I take my dose at 5 pm. This seems trivial and counter-intuitive but it worked! Talk to your doctor. It saved my life.

EJS
Allison, Ontario
Canada

Medical Reply

Mirapex takes 1-3 hours to "kick in" so taking it at bedtime when symptoms typically start is not correct or advised. If your symptoms start at bedtime, you might do just as well by taking Mirapex 1-3 hours before bedtime as at 5 pm or if they occur earlier then adjust accordingly.

Sent: Tuesday, October 08, 2013 6:01 AM
Subject: Restless legs

I'm a 31 year old women with restless leg from 1997. I was doing well in the beginning, but now it's a lot worse. I use Pexola 0.25 mg two a day. And sometimes that doesn't help. I'm going without sleep for 5 days. What can I do? Do I have severe restless legs or just moderate RLS?

Medical Reply

Your case is likely that of moderate to severe RLS. However, it is likely that the pramipexole (Pexola, called Mirapex here in the USA) may be worsening your RLS by a process called augmentation. There may be lots of other factors (such as other drugs you may be taking that can worsen RLS). However, if you have been increasing the dose of pramipexole over time and it only works for several months or years until you need more, augmentation is quite likely.

Check out our letters and website to see lots more information about augmentation.

Sent: Wednesday, October 09, 2013 8:08 AM
Subject: RLS - Mirapex and sleep aids

Hello. Last week, my doctor prescribed .25mg of Mirapex each night for my Restless Leg Syndrome. It has been working wonderful, except that now I get to stay awake and be amazed at the lack of RLS symptoms. Can you please tell me which sleep medications are safe to use with Mirapex? I have been taken off my Premarin due to the increased breast cancer risk in my family.

So, other than Mirapex, I take Paxil for anxiety, lisinopril for minor high blood pressure, loratadine for allergies, Protonix, and Asacol at maintenance dose level for Ulcerative Colitis.

Susan B.

Medical Reply

Typically, Mirapex is started at .125 mg and only increased if that dose is not adequate to sufficiently relieve the RLS symptoms. Although sleepiness is the more common side effect with Mirapex, many patients do experience insomnia and since this is a dose related side effect, you may do better at a lower dose (if that lower dose relieves your RLS symptoms).

Another issue is that Paxil worsens RLS. However, if you really need to be on an antidepressant drug, then you should stay on it and just treat your RLS as needed. You probably should download the RLS medical alert card from our website that lists all the drugs that worsen RLS and alternative drugs that are RLS friendly.

Most all the prescription sleeping pills (except for Silenor which contains doxepin that worsens RLS) are fine to take with Mirapex. It is very common for RLS patients to complain of insomnia as they have increased levels of glutamate which is not addressed by the dopamine agonist drugs like Mirapex. An alternative therapy for your RLS is Horizant which does address the glutamate issue and helps promote sleep while treating your RLS (and thus may kill 2 birds with one stone).

Sent: Wednesday, October 16, 2013 5:29 PM
Subject: Seeking help for restless leg syndrome.

BRIEF MEDICAL HISTORY.
Age 70 years old. Height 173cm weight 87kg

I have been suffering from RLS for over 20 years. My Father was a chronic sufferer and several of my adult children also suffer from it. A sleep study 15 years ago revealed chronic Sleep Apnoea and very restless legs. There was 90 Apnoea recorded an hour with up to no breath for 110 seconds and low oxygen levels down to 82 percent . I also had approx 140 leg movements per hour.
Treatment commenced immediately with a CPAP machine and some medication for RLS. I think we were asked to try Sinemet for some time followed by Cabaser. My RLS improved but there was only minor improvement. Due to depression I was started on a variety of the usual antidepressants. After a trial and error period I was put on nardil . This helped me cope better with day to day life but I found my mind very active at night and I did not get a good night sleep.

My CPAP machine reduced Sleep apnoea to about 6 disturbances a night and this has now settled to less than 4 some nights and none most nights. I now have this under good control.
For the last 5 years I have not found any medication that reliably controls my RLS. I have some good nights but usually 2 restless days a week some times it keeps me awake all night and into the next day. Often goes away during the next day and starts again late afternoon. The medication’s tried over this period of 5 years are: Temazepam , Diazepam, Clonazepam. Cabaser, pramipexole, Ropinirole, Gabipentin, Lyrica. (morphine) Oxycon , Targin , Quinine, Tramadol.

There are some others but I can’t remember their names. Currently I am using the Rotigotine patch 3mg /day. I cut a 6mg in half. Also I am taking Pramipexole .75mg ER. I still use an antidepressant , Duloxtine 30mg but this seems to cause an increase in RLS. The dose was increased to 60 mg and RLS increased. The most recent experiment my GP tried was agomelatine (valdoxan). I had side effects that made the change to it undesirable and the medication was stopped. I think My GP was trying to find an antidepressant that did not interfere with the serotonin levels.

I have noticed that MSG ( monosodium glutamate) causes quite severe attacks of RL and my left leg seems worse than my right. Sometimes my whole body seems agitated, not that it moves in jerky ways but very restless. I can’t stand still or relax. A hot shower seems to help but sometimes it only lasts for 1 hour then the RL come back again. If I take a Zolpidem to help me sleep I am told by my wife that I have a very restless sleep. I wake up the next morning very tired. Sleep has become my biggest problem. I find that I lack energy and feel weak and lethargic. Can’t do much physical work & when I sit down I drop off to sleep.
I have tried mineral supplements of Folic acid and magnesium (Orthoplex MagOpti) these result in a slight improvement on my health (sleep better) but does not prevent RLS.

Present position.
I had hip replacement surgery (right hip) in May 20012. After going home with no complications ,had an accident. I damaged the bone around new hip implant. Resulted in emergency surgery and picked up a STAPH infection. Had 2 more revisions of hip to try to clean out bug and put on strong antibiotics for 15 months. Stopped these antibiotics 2 months ago.

Current meds are 1 / Pramipexole 0.75mg ER, Neupro rotigotine patch 4mg/24hrs, for RLS. 1/Duloxetine (Cymbalta) 30mg for depression. 1/Celebrex 200mg and Panadol osteo 2/665mg paracetamol tabs 3 times a day for arthritis. My big problem with dopamine agonists is peripheral oedema. The interesting characteristic is that my left leg seems more swollen than my right and this is the leg that starts out and is usually more jerky than my right.
I also use herbal supplements, saw palmetto for prostate , olive leaf extract for metabolism, magnesium for restlessness and omega 3 fish oil , these are recent additions to my healthy life style and seem to have no effect on RLS. I don’t drink alcohol or smoke cigarettes. I have a 5 acre property with several hundred fruit trees and this keeps me physically active. I have 4 adult children married with 11 grandchildren this also contributes to my busy life.

I seem to be having a good week free from RLS, this is unusual and great however the swollen legs concern me and the unexpected attacks of RLS seems unpredictable. I hope you may have a better treatment plan. My local Doctor is very cooperative and happy to try new meds if you can suggest a new approach to my problem. I thank you for giving me the opportunity to contact you and wait patiently for your answers.

Graeme H.
Western Australia

Medical Reply

Your problem is that the very large dose of dopamine agonists (combination of Neupro 4 mg and pramipexole ER .75 mg) are likely driving augmentation of RLS (a worsening of RLS from taking those dopamine agonists). Either dose of Neupro or pramipexole is considered high and therefore, the combination is even much worse.

The treatment for this augmentation problem is to get off of all the dopamine agonists. Typically, opioids are needed when withdrawing from the dopamine agonists but you have already not responded to morphine and OxyContin (oxycodone). However, methadone often works well when other opioids are not helpful.

After you are off the dopamine agonists, Lyrica may be helpful to reduce the need for opioids (methadone) but it also causes edema so that might be an issue for you.

I have attached an article that I wrote last year to guide physicians on how to treat RLS and augmentation.

Sent: Thursday, October 17, 2013 9:48 AM
Subject: RLS research about Glutamate

I¹m a 55 year old male currently taking Lyrica (300ml) for RLS and persistent Periodic Limb Movement While Awake. Dr. Allen at Hopkins published research in Neurology (May, 2013) about the elevated levels of Glutamate in RLS. It suggests that this neurotransmitter may create a state of ³hyper-arousal² for RLS patients. Are there medications that can decrease Glutamate?

Erik S.

Medical Reply

The alpha 2 delta drugs (gabapentin, Horizant and Lyrica) all suppress glutamate. That may be why they can cause sleepiness as a side effect.

Dopamine agonists (Requip, Mirapex, Neupro) and opioids help RLS symptoms but do not suppress glutamate which is why RLS patients on those drugs still have issues with insomnia.

Sent: Friday, October 18, 2013 9:35 AM
Subject: RLS Diagnosis - Patient Question

I have recently seen a neurologist specializing in movement disorders at Columbia Presbyterian in New York City, whom I feel should be very well-versed in RLS and associated conditions. However, despite considering myself the "poster child" for primary RLS in terms of symptoms, the neurologist immediately ruled out that diagnosis because he believes that the progression of my condition was far too rapid to be RLS.
Essentially what had happened to me was that I was recently struggling through a period of intense mental and physiological stress. I had non-RLS-related insomnia for two months prior to the onset of my major RLS symptoms, and was having some financial and social difficulties as well.

My primary care physician had prescribed me the lowest dose of trazodone to combat the insomnia, which I took for 3 nights but then immediately stopped taking due to psychological side effects. This was a bit more than one month ago. The two nights after I stopped taking the trazodone, I experienced severe RLS only in my legs, at bed time. Again, this was one month ago. Since last month, I have gone from having no RLS symptoms (or none that were troublesome to the point that I would be aware) to the massively uncomfortable tingly, achey, antsy sensation accompanied by the urge to stretch and move the muscles in my legs, feet, arms, and hands, as well as involuntary twitches and muscles jerks - particularly when relaxing, standing still, or lying down, but not limited to the evening or night time.

 I am a 25-year-old female, and my only recollection of previous RLS symptoms from earlier in life are very environmental-specific: I would only experience RLS when I was trying on clothes in a fitting room, or at the tailor having clothes altered on me, and the second I moved my legs around the feeling would dissipate and that would be the end of it. Since I've always had trouble falling asleep, it's possible very mild RLS was always present and I did not know what it was, but it's hard to retrospectively figure that out and I don't want to start making things up in my head that never actually happened.

I have had just about every other diagnostic test performed to try and pinpoint the cause of these symptoms, including brain and spinal MRIs. Every test result is negative, except that my iron levels are low, however, they have been low even since I was a child (I have since started taking supplements to see if that helps). I do have Tourette's Syndrome, probable ADD according to the neurologist and my primary care physician, as well as a history of depression/anxiety-related issues, though those are largely in the past now. Thus far, I have been prescribed, Xanax, propranolol, Klonopin, and Ambien - none of which have been helpful in alleviating the physical discomfort and twitching. I know that even if I were to be diagnosed with RLS, dopamine agonists are out of the question because my serum ferritin is 30.

The neurologist at Columbia has given me Clonodine to see if this is all perhaps an exacerbation of my tics (which I highly doubt because it feels nothing like a tic), and then his second hypothesis was Conversion Disorder. Admittedly, it may well be conversation disorder, but I refuse to jump to that conclusion until I know that RLS has absolutely been ruled out.

Was the onset and progression of my RLS symptoms TOO rapid to warrant the consideration of RLS as a primary diagnosis, as the neurologist believes? Have you ever seen symptoms seemingly come out of nowhere and become so intense within just one month? Do my very limited, past episodes of RLS imply that I've had this condition all along and that the stress is what made the progression so rapid? Should I seek a second opinion or a doctor who would be open to diagnosing me with RLS even if the progression of my symptoms is atypical and not in accordance with past medical experiences?

I very badly hope and want to believe that this is all predominantly psychological, but I just do not feel comfortable with a doctor ruling out a diagnosis because the presentation is different from what he normally sees.
What would you advise?

Lindsay S.

Medical Reply

Unfortunately, most specialists (sleep doctors and neurologists especially the movement disorder specialists) who see the tougher RLS cases do not have a lot of experience with those tougher RLS cases. Although I cannot say definitively that you have RLS (without seeing you as a patient myself), your story is very suggestive of RLS. You clearly meet the 4 diagnostic criteria and even the new 5th criterion that mimics should be ruled (which has actually been over killed by the slew of tests that you have had performed).

Although RLS typically does not appear that suddenly, we do see cases similar to yours. Furthermore, you have experienced more minor episodes in the past so the RLS is not just starting for the first time out of the blue. Most patients worsen slowly (over decades) but situations such as high stress can precipitate marked worsening of RLS.

Xanax, propranolol, Klonopin, clonidine and Ambien do not help RLS so that would certainly add credibility to your diagnosis of RLS. It would be very unlikely for a conversion disorder to simulate the symptoms of RLS (especially with movement relieving the symptoms).

It may be worthwhile for you to go to Johns Hopkins  to get a very qualified second opinion and institute proper therapy.

Sent: Saturday, October 19, 2013 2:26 AM
Subject: RLS/WED Advice

My RLS is out of control. I am looking for advice. I am already doing warm baths, warm packs at night, potassium and calcium, had blood work that all looks fine, stretching, massage, exercise, good sleep hygiene, no caffeine or alcohol, B-vitamins. Any other ideas?

My doctor has taken me off Requip due to augmentation (was on it for 10+ years), tried Tylenol 3, (did nothing) now on Neurontin (only 3 days). I know the Neurontin takes a while to work, so I'm just trying to make it through till that happens. I'm on antidepressants, but my shrink isn't available until Monday to discuss options. Sleep doc not available until Tuesday. General practice doc not willing to offer advice.

Laurie B.

Medical Reply

There is no easy solution that fits everyone. Neurontin may be helpful for your RLS but this drug has absorption issues that make it a very unreliable treatment for RLS. That is why we recommend the newer drug, Horizant that is typically much more effective for RLS. However, for patients who have experienced augmentation, the alpha 2 delta drugs (Neurontin, Horizant and Lyrica) are most often not sufficient by themselves to control RLS.

You may do much better if you see a doctor who is an RLS specialist and can manage your more difficult case. Also, most antidepressants worsen RLS (as you already likely know) so that may be compounding your treatment.

Sent: Tuesday, October 29, 2013 5:01 AM
Subject: RLS and Adderall?

How does Adderall effect restless leg syndrome? It seems to really help me during the day but worry that it might make my nighttime symptoms worse.

Angela A.

Medical Reply

Adderall does not worsen RLS. Therefore, it is not clear why your nighttime symptoms have worsened.

Sent: Wednesday, October 30, 2013 9:59 AM
Subject: methadone for RLS?

Long story short, since we've tried everything else with no luck, my doctor wants to try 2.5 mg of methadone twice a day. I'm a bit reluctant to try it. In my mind, methadone is a serious drug with dangerous side effects and risks (like sleep apnea, decreased libido, teeth rot, etc.). But maybe this dose is small enough to be effective yet safe? Is it just a myth that methadone rots your teeth? I greatly appreciate you taking the time to read and respond to my questions and concerns.

PB

Medical Reply

Methadone is a serious drug that should typically be tried after failing the other classes of RLS drugs. However, when needed and appropriately used, it is one of the most effective of all the RLS drugs and is most often very well tolerated. The dose should be kept as low as possible and most people do well with doses up to 10-20 mg/day or more. However, this drug should be monitored closely by the prescribing doctor.

It does not rot your teeth (that is clearly an old wives’ tale). It may worsen central sleep apnea but not typically the more common obstructive sleep apnea problem. Although it may decrease libido, that is actually a more uncommon side effect (and with RLS controlled, your libido may actually increase). The most common side effect is constipation (which can be easily treated with MiraLax). Tolerance/dependence (“addiction”) should not occur if dosed correctly (and if patients with a previous history of drug abuse are excluded).

A Reply from PB

Sent: Thursday, October 31, 2013 4:15 PM
Subject: methadone and hopeful pregnancy

Sorry, my wife has a few follow up concerns. She wants to have a baby. Would me being on methadone cause any fertility problems, either with getting pregnant or risk of birth defects? She thinks I should wait until after she’s pregnant before starting the medication. Do you agree?

PB

Medical Reply

Luckily, there are no fertility problems in men associated with methadone and there are only rare drugs that can cause a man’s sperm to increase the risk of birth defects (and methadone is certainly not one of them).

A Reply from PB

Sent: Tuesday, December 10, 2013 3:41 PM
Subject: Other Opiates/Narcotics

I wrote to you back in October asking about methadone. I started out at 2.5 mg twice a day. It was ineffective until I got up to 10 mg twice a day, but that came with some nasty side effects (stuffy nose, sneezing, extreme daytime sleepiness, nausea, head aches, hand trembles, moodiness, insomnia, bad taste in my mouth, and severe itching to the point of breaking the skin and bleeding). The only other medication I’ve been successful with was tramadol, but the effectiveness began decreasing after three months (and gave me sleep apnea while I was on it).

I’m hoping that my experience with the methadone is atypical and not indicative of what I should expect from another opiate/narcotic. That being said, is there another one you’d recommend I try? Or do I have to cross the opiates/narcotics off my list of options? That would leave me hopeless. I’ve already tried Neupro patch, Mirapex, Requip, gabapentin, Horizant, and Klonopin (and probably some others I’m forgetting).

PB

Medical Reply

It is not unusual to get side effects from one or more of the opioids and still be able to find one (or more) that will treat your RLS without side effects. The next opioid that I typically try is oxycodone which is not as potent as methadone (about 25% less) and only lasts about 4-6 hours (rather than the 8-10 for methadone). If the oxycodone works well but you need multiple doses per day, you and your doctor might consider OxyContin (the 12 hours preparation of oxycodone).

Sent: Sunday, November 03, 2013 7:43 PM
Subject: PLMD - anecdotal report of relief from ginger.


I know this isn’t specifically about RLS, but I believe the great majority of RLS sufferers also have PLMD (4 in 5), so this could be of interest here. But if there’s an equivalent of this page specifically for PLMD, please feel free to move it or repost it there.

At the beginning of September 2013, I started to experience gastric trouble (nausea), and used ginger to control it, with great success. I grate root ginger, steep it in a half cup boiling water in a tea-infuser, added sugar/lemon/lime, and then dilute it up to a liter, which I sip (cold) all day. Works a charm. (Commercial ginger tea does the same job, but is much more expensive and less concentrated.)

But what I’ve noticed is that the PLMD has also simultaneously pretty much gone away. The odd twitch, but nothing compared to usual. Of course PLMD does come and go, and we’re only talking about two months experiment, but so far my anecdotal report is positive: ginger is helping my PLMD.

I’d be fascinated to hear if anyone else has had a similar result, or fancies trying it.

Simon M.
UK

Medical Reply

You are correct that the vast majority of RLS patients have PLMS (we only use the term PLMD when the problem is not associated with RLS or any other disease). Our site does cover both RLS and PLMS or PLMD so we will post your email.

Sent: Sunday, November 03, 2013 7:49 PM
Subject: RLS help

I've had RLS since about 13 years old from what I can remember but was only diagnosed 4 years ago when I saw a commercial on TV for it and asked my MD about taking meds for it, after which I was Rx Requip. I was amazed how quick it worked and what relief I felt. "So this is what my legs should feel like I thought to myself." Now I wish I had never taken anything. Prior to taking meds, it hurt and I had to constantly move my legs, but it was tolerable. After two weeks the meds stopped working and so I was referred to a Neurologist. They put me on Requip XL in addition to the Requip (there was also a period where I tried Mirapex but it didn't work as well or it didn't feel as strong as the Requip). Then that didn't work after about 6 months and now I'm taking 4 mg Requip XL and 2 mg Requip (regular).

The XL works great for the duration of the day, but the regular 2 mg is what I really need at around 5 pm (I take the XL 4 mg at bedtime). The problem with the regular 2 mg Requip (non-XL) is it makes me anxious and irritable (and tired). I also take Lipitor and Lexapro 40 mg. For the two weeks I've taken a 1/2 tablet 5/325 oxycodone and that's helped immensely and I've been taking that once per day. However, now my legs are getting worse again and I'm really at wits end.

My legs are in so much pain that it really is effecting my daily life and relationships (if I go out to eat for dinner I have to take a Requip 2 mg (regular) but it makes me irritable and tired so I don't enjoy myself. And since alcohol makes it worse, I can't have a good time with a glass of wine. The best part of life is from when I wake up (7 am) to 3 pm. I'm almost on a natural high because I don't have leg pain. But then after 3 pm it gets so bad that I just fear the pain. Is there anything I can do differently and how bad is this going to get? I'm really worried because I'm young, in my 30s and if this gets worse I can't imagine. I also fear living off of narcotics which I don't want to do. I am overweight which my neurologist told me could be a contributing factor as possibly is my Lexapro. I keep trying to exercise and do, but not consistently.

Eric S.

Medical Reply

Your neurologist is correct about the Lexapro worsening your RLS (Wellbutrin may be a better choice if it works for you as it does not affect RLS) but totally incorrect about your weight contributing in any way to your RLS problem.

The real concern is that the dopamine agonists (Requip) have caused augmentation (worsening of RLS from taking the dopamine agonist) and taking more Requip will help temporarily but only add fuel to the fire and continue to worsen your RLS. The treatment is to get off of all your dopamine agonist drugs which is very difficult to do as your RLS will get markedly worse for several weeks or months before it starts to get better. RLS experts typically treat this transition with potent opioids (like oxycodone) but it most often takes an expert with lots of experience to handle this situation without causing significant discomfort.

However, rest assured that with proper treatment from a physician who is well versed with treating difficult cases/augmentation, most all RLS sufferers should be able to get excellent relief and live without being plagued by RLS symptoms.

DISCLAIMER

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

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 105.
http://www.rlshelp.org/rlscomp105.htm
This web site was last modified on Tuesday, December 10, 2013.
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