Patient letters on RLS symptoms and remedies- Page 117


Kicking RLS/PLMD Patient

Sent: Monday, July 31, 2017 1:41 AM
Subject: Restless Legs Syndrome (RLS)

Before I retired I would get RLS once or twice a year. But after I retired I started getting it every night. They started me on .125 mg of Pramipexole which worked like a charm but slowly I had to keep taking a higher and higher dose to get relief. 7 years into retirement and I was at 1 mg and augmentation kicked in.

I started getting symptoms earlier in the day and in my upper body as well. I decided to try to wean myself off Pramipexole so I could reset back to the .125 mg level. I cut the Pramipexole dose in half and added in 2.5 mg of Oxycodone that I had acquired for other medical problems (no doctor would prescribe Oxycodone for RLS). This has worked but Iím running out of Oxycodone. My neurologist suggested taking Lyrica and weaning off Oxycodone first and then off Pramipexole. Itís only been a few days, but Iíve been able to stop the Oxycodone.

My question is how fast should I try to wean off Pramipexole and in what dose decrements. I did try .25 mg Pramipexole and the RLS came back with a vengeance. Also Lyrica is still under patent and very pricey. Is there another similar drug I can try?

John S.

A Medical Reply

The issue that you will have that will make it difficult to wean off the pramipexole is that once augmentation has occurred (a worsening of RLS due to taking pramipexole over time), getting off of it will make the RLS many times worse for about 10-14 days. Whether you taper slowly (by .125 mg) or more quickly by .25 mg, once you try stopping the pramipexole completely, it will be very difficult.

Lyrica does not work that well to help patients wean off pramipexole. Gabapentin is somewhat similar (but does not get absorbed as well or as predictably) but is cheaper (but still may not help that much).

Only opioids such as oxycodone work really well to transition off pramipexole. However, you may need a low dose indefinitely and may have trouble getting it prescribed for you.

Sent: Sunday, August 06, 2017 6:50 AM
Subject: RLS and dopamine agonists

Can Dopamine Agonists meds e.g. Mirapex and Ropinirole be taken on an "as needed basis ",taking once symptoms have already occurred?

This is currently a topic of discussion on a support group. I would say it needs to be taken on a daily basis as symptoms are more difficult to stop once started and taking as needed would cause a rise and fall of dopamine levels.

Kim W.

A Medical Reply

You are partially correct. Typically, it is so much easier (and requires less medication) to prevent RLS symptoms rather than waiting to treat active symptoms. That being said, for patients with intermittent RLS (who donít typically know when they are getting symptoms), short acting DA used to be on the RLS treatment algorithm. In the more recent one (2013), we dropped short acting DA from the algorithm for as needed use. However, I have patients who do use it on an as needed basis and seem to do well (a small group of patients). I also have patients who will take a DA before a long plane trip or car trip (before symptoms start) and that seems to work quite well (with no concern of augmentation due to the intermittent usage).

The other issue is that some patients need to slowly increase the dose until they reach an effective dose (due to side effects) and then intermittent DA therapy would not be appropriate.

Sent: Tuesday, August 08, 2017 5:31 AM
Subject: RLS and bariatric surgery

I'm a 42 year old old women who's dealt wit RLS for over 10yrs. It also runs in my family, my mom, nana, and sister all have dealt with it. At first I would drink calm and it was fine. But over the past few years it's gotten worse. I started Klonopin .5 then 1mg then 1.5mg. I didn't use it every day but only as needed. I also tried Requip but that made it worse. Muscle relaxers make it worse to (I've tried flexeril and Tizanidineack).

Back in Nov I had gastric sleeve surgery (I was type 2 diabetic, high bp, high cholesterol). And my RLS went away for awhile. I've had my iron and magnesium checked and it's all good. But ever since my surgery I've had back problems. I have herniated disks from T1-10 with majority of the problems t5,6,7.

In March I started having shots in that area (11 totally) along with taking 100mg of Tramadol at night. 2weeks ago I stopped the Tramadol and then started taking an oral steroid for sciatica pain. This week has been the worst for my RLS. I've hardly slept. Taken many Epson salt baths, tried Ambien, worked for maybe an hour.

My problem is I can't take gabapentin it upsets my new stomach. I can't take any anti-inflammatory medicine or extended release medicine. What can you recommend? I need sleep. I can say my A1C is 5.5 so that's good but since I started the oral steroids my bp has gone from 118/73 to yesterday 139/106.

Could this make my RLS worse. And what do you recommend. I haven't slept much over the past week. What kind of information can you give me to pass along to my doctor. I did also just start exercising too. Any help will be appreciated.

Jodi E.

A Medical Reply

You could discuss taking Lyrica with your doctor. It is similar to gabapentin (acts on the same receptors) but is chemically different so it may not upset your stomach. However, it can be expensive as it is a brand name (no generic yet) and is not FDA approved for RLS.

Another choice would be to use tramadol on a regular basis as it does treat RLS quite well and stopping it may have aggravated your RLS.

Also, check your ferritin levels (iron stores) as we like to have them well above 75.

Sent: Sunday, August 06, 2017 1:56 PM
Subject: Urgent advice needed

I would like to ask for your help, if possible, to decide what medication is best for me now that I have gone ďcold turkeyĒ off 12 mgs. of Extended Release Ropinirole, which I have been on for over seven years. The website members on Health Unlocked helped me to recognize that I had been experiencing extreme augmentation for months due to this extremely high dose my neurologist had put me on. In less than year, he increased my dosage from 2 mgs of regular Ropinirole to 12 mgs, by going from 2 mgs, to 4 mgs, then 8 mgs, and finally 12, whenever I saw him expressing a concerned about an increase in the frequency, duration, and intensity of my RLS symptoms as they were also expanding from my legs up through my entire body.

When he put me on the 12 mg dose, my episodes became completely unbearable, occurring once and sometimes twice a day, lasting anywhere from 2 to 8 hours. Of course, sleep was impossible. He never once mentioned the word augmentation, something I knew nothing about, until I discovered the Health Unlocked website when the 12 mg dosage led me to turn to the Internet for help. Instead, he suggested that I was bringing these episodes on myself, because I was over reacting to the severity of these episodes, thus trigger more episodes. That was the last straw for me with this neurologist. I never went back.

I instinctively knew I had to get off this awful medication. When I began researching RLS treatment options, I joined the RLS/WED society, and found my way to the Health Unlocked website. In addition, I solicited the help of my GP, who admitted that even though she didn't know much about RLS, she would be fully supportive of my intention to get off this medication slowly, and agreed to research it along with me so that we could determine what needed to take place as I continued to titrate off Ropinirole. She ordered blood tests to check my iron levels. They were low. I was not anemic, but my iron stores were definitely under the acceptable limits. I began taking iron sulfate twice a day, but it didnít do a thing for me.

The health unlocked website members clued me into the advantages of using Iron Bisglycinate. I had never heard of it nor had my GP. The first time I took the 28 mg Iron Bisglycinate capsule with orange juice as they instructed during an augmentation episode, I felt complete relief in less that 15 minutes.

As of mid-June, I had titrated down to 2 mgs/day of regular Ropinirole since January of this year. It all went quite well. I experienced almost no augmentation or even RLS symptoms, until I got down to 4 mgs. a few months later. At that point, I started experiencing full-body augmentation again, but continued on. When I got down to 2 mgs. one website advisor suggested I switch to 2 mgs of the regular Ropinirole as the augmentation on it is often less. I did, and it was better. My symptoms were mostly confined to one leg or the other, however sleep was still difficult. In addition, my quality of life was affected, because I couldnít sit in a chair or a car seat for more than 20 minutes without my legs going twitchy.

Rather than continue slowly titrating down at .5 mgs/month for he next few months, I decided to go "cold turkey" as some of the website folks had done. They warned me about the severity of withdrawal. Trusting their warning, I met with my GP and told her of my decision to discontinue my Ropinirole altogether, and asked if there was something she could give me to ease the withdrawal symptoms. She gave me a script for Clonidine 0.01 mg once a day. I started the process last Friday. It hasn't been too bad, although she did have to increase my clonidine from one pill to two a day as the first three days were very difficult. I got little sleep, but symptoms began to ease over the course of the week. I was also taking 1200 mgs of Gabapentin/day and 200 mgs of tramadol, which I had been on for several years due to a botched foot operation resulting in painful nerve and arthritis damage in both feet and ankles.

Eight days later, I am now feeling much better, with only mild leg twitches twice a day, always at 4 PM and 9 PM, the exact times of the day I tend to get sleepy.

My concern now is as I come to the end of this "cold turkey" withdrawal, what can I expect from my body and my RLS? My GP suggested that I may be able to maintain control over my RLS with an increase in Gabapentin, perhaps to 2400 mgs, spread out to 4 doses of 600 mgs each throughout the day, and 100 mgs of Tramadol twice a day, along with Iron Bisglycinate once a day. However, Iím finding I do need the iron now twice a day. I am of course concerned about taking too much iron. We will test it frequently to see if that should begin to happen. MY GP thinks that twice a day for a while will be okay, but to use it only PNR.

I am asking for you for advice and guidance Dr. Buchfuhrer to tell me as best you can without seeing me (this is why I gave you so much detailed information about my medication and experience) if you think that perhaps the Gabapentin, tramadol, iron combination could possibly be a viable approach, now that I am off the ropinirole and have no intention of ever getting on a dopamine agonist again.

If this combination of medication doesnít work, neither I nor my GP know what to suggest as another course of treatment for me now. She thought perhaps Lyrica might be good, especially since I have a lot of nerve and arthritis pain in my feet and ankles, but Iím concerned about the negative side effects, such as memory loss, dizziness, jelly legs, hair loss, and weight gain. I am over all, a healthy and active 70-year old woman, who has had few health issues, other than a recent surgery to remove an 8 cm. ovarian cyst along with my ovaries and tubes. I recovered from that nicely, but found that the Percocet they gave me following the surgery aggravated my RLS. So I am concerned that being on any kind of opioid drug is not an option for me as an alternate treatment. I have had no bad side effects on gabapentin or tramadol. I looked into gabapentin enacarbil (Horizant), but the copay for me would be close to $500 a month. As a retired person on a fixed income, that is out of the question.

Barbara G.

A Medical Reply

It is difficult to give you specific and detailed advice as that is not the purpose of my website/email service. I try to answer simple questions and guide patients in the right direction.

You are correct that you should not go back on any of the short acting dopamine drugs (and likely not the long acting ones either).

Gabapentin is not well absorbed (in most people) in doses over 900 mg so increasing the dose may not be helpful. That is not the case with Horizant or Lyrica (this may also be expensive).

Even though Percocet seemed to worsen your RLS, this could have been partly due to the surgery/post op period or you may still do better on a different opioid.

A Reply from Barbara

Sent: Tuesday, August 08, 2017 10:35 AM
Subject: Re: Urgent advice needed

Thank you for taking the time to respond to my email regarding options for my what-do-I-do-now plea. Your answers were most helpful as were your Guidelines for first-line treatment attachment, which I did pass on to my GP. However, I do have a few follow up questions:

1. How long does Ropinirole withdrawal typically last, as I am still have some severe withdrawal symptoms in my legs on day 10?

2. Your paper suggests that perhaps I should consider a transitional medication, especially since Gabapentin is not well absorbed beyond 900 mgs. Yes, Horizant does look like a very viable option for me, but the cost is out of the question. Lyrica is affordable, and although I am cautious about the side effects, might that be a good transitional medication to help me through these last few days of withdrawal?

3. Might Lyrica then be a good next step medication to help me manage my RLS for the long or longer term?

4. What about Rotigotine as a transitional medication during this withdrawal?

Any light you can shed on this very dark time in my life would be so greatly appreciated.

Barbara G.

A Medical Reply

It typically takes about 10-14 days for the RLS to calm down considerably after stopping a dopamine drug like ropinirole. However, some patients have experienced weeks or longer of worsening (a small percent however).

Lyrica is typically better and more predictable for treating RLS. Its major side effects include sedation, weight gain and edema (swelling of the legs).

Rotigotine (the Neupro patch) is a dopamine agonist and you would need a very high dose to match the ropinirole dose that you were taking. Normally, I would not consider using this drug at this time in your case. I sometimes add a small dose (like Neupro 1 mg) later on if I need more help and have a limited choice of other drugs to use (typically because the patient is intolerant or not responsive to other treatments).

The problem with all the above is that it often takes considerable expertise to manage all the options and choose the correct ones. Most doctors have little experience and donít know these drugs very well. Again, even though you had a bad reaction to Percocet, opioids are typically the most effective (and very safe when used correctly) treatment for RLS especially once augmentation has occurred.

Sent: Tuesday, August 08, 2017 9:39 PM
Subject: RLS help

I'm a 58 y/o male living in Adelaide, South Australia - a long way from California sorry. Very recently prescribed 0.25 mg/night pramipexole. My question relates to whether or not I have Restless Legs Syndrome or Periodic Leg Movement Disorder or a some kind of cross between them. My symptoms are intermittent. When they occur it is almost always on retiring for bed & within 20 minutes I get a mild upper left quadrant ~ stomach or abdomen discomfort which seems to trigger a nerve impulse usually down my right leg - however - it can also just affect the left leg occasionally resulting in an involuntary leg jerk twitch.

From reading the criteria for RLS - I'm a bit confused as to whether or not my leg jerk/twitch is the same as the one described as an URGE to voluntarily move my leg. It is a totally involuntary jerk. It is severe enough to prevent sleep onset.
I've had investigations to rule out anything sinister in the GI tract Antacids - proton pump inhibitors and simethicone have little to zero effect on the abdominal discomfort or the jerk.

However - the confusing part is that for the 4 out of the last 6 nights that I had symptoms.. After the onset of symptoms - I took 1/2 tablet (0.125mg) pramipexole and it had rapid effect in ceasing the symptoms. I've had these intermittent symptoms for around 30 years with no real increase in frequency or severity.

I have recently completed a very slow 9 month taper off of intermittent prescribed benzodiazepine use. (last on clonazepam 4/mg/day). My thoughts are that the RLS? symptoms are somehow linked with the chronic intermittent benzo use.

Andy R.

A Medical Reply

You most likely do not have RLS but may have PLM. Those are involuntary leg jerks (sometimes even including the arms) that occur at rest and especially when in bed. Pramipexole works extremely well to ablate the PLM. However, with time, the pramipexole may worsen the PLM or even trigger the emergence of RLS.

Sent: Monday, August 14, 2017 3:44 PM
Subject: best relief ever

Severe RLS for 38 long years. I have tried more ways of feeling better than I can fit on a page so will not bother with a list.

Last year I finally got an appointment at Johns Hopkins in Baltimore, MD. The doctor ran me through a lot of tests.
In the end she told me to go either cold turkey or gradually off of Ropinirole and not to resort to taking Mirapex because it works the same. She said at Johns Hopkins they find they must do this for every person who has been taking them who comes in before they can treat them. They also, NEVER prescribe these meds because they always make the RLS worse over time.

I went through several weeks of withdrawal hell.

I started to just take 100 mg of Tramadol at 13:30 and another 100 mg Tramadol at 19:30. Over the past several months I have had more sleep than I have had in 38 years and the RLS rarely bothers me during the day.

This, to me, is a miracle.

Also, I do not eat anything from the nightshade family of fruits and vegetables nor do I eat apples, cherries, beets or any number of other items that contain solanine. If I do, I pay the price.

I want to share my success. My life is new and I am forever grateful. There are no words that can adequately explain the horrid mess I had prior to this.

Linda W.

Sent: Saturday, August 19, 2017 7:10 PM
Subject: RLS question

I'm a 60 YO female who just had a total hip replacement 30 days ago which I'm recovering nicely from, and I had a cervical laminectomy 1.5 years ago on the left side, however the spine surgeon at the time told me the MRI actually shows more stenosis on the right side (although I'm asymptomatic on the right side). I regret not having had the laminectomy done on both sides.

I also have 2 histories of sciatica (17 and 14 years ago), one of which was treated with a lumbar injection. Lower back pain has been manageable but my question is this: I have RLS, sometimes so severe that I need to take hydrocodone to get any relief. I'm also on Requip and two other antidepressants for depression/anxiety, and Levothyroxine for hypothyroidism.

I've heard that RLS can be (or is) caused by inflammation. Could this be the case, that it's exacerbated by any one of my conditions of the spine? Should I get a second MRI? I'm almost at the point where I can't live with this RLS, Requip isn't helping and I don't know what to do next.

Heidi H.

A Medical Reply

RLS is not directly affected by inflammation in your spine or anywhere else.
So, if you need an MRI, it should be for your back pain or sciatic symptoms, not for RLS.

Your RLS may have just gotten worse after surgery as you may be more sedentary after the surgery and that triggers more RLS. Also, any stress (like surgery) tends to worsen RLS.

Your bigger and more important issue is that Requip tends to cause augmentation (a worsening of RLS) that increases RLS symptoms and creates a need for higher doses which will continue to worsen RLS. I have attached the RLS augmentation article that several of us experts have recently published which explains this issue in more detail.

In addition, most antidepressants worsen RLS so that may be adding to your problem.

Sent: Sunday, August 20, 2017 6:22 AM
Subject: Requip side effect

I have RLS & my doctor prescribed Requip. Requip immediately stopped my RLS. However, after taking this drug for about 6 weeks; I have swollen joints, fluid retention & joint pain. My doctor told me to stop taking Requip immediately & prescribed Lasix for fluid retention. I am still having all of the above symptoms.

Does Requip have a long term effect with these complications?

Rita H.

A Medical Reply

Requip usually does not have long term side effects after being stopped. Your symptoms are quite unusual after stopping Requip so if they persist, further investigation would be needed.

Sent: Friday, August 25, 2017 12:41 AM
Subject: Ropinirole

I am a long time sufferer of RLS and would very much appreciate some advice. I have been taking Codeine for some time with some success. However, I need another medication to rotate with this because I regularly build up tolerance and need to take a drug holiday in order to make it effective again.

I live in the UK where Ropinirole is the main drug used to treat this condition. I don't want to take any medication every day and also I am aware of the problems with augmentation with any dopamine agonist. Is it possible to take Ropinirole three or four times a week or does it need to be taken daily?

Anne B.

A Medical Reply

Once you find the lowest effective dose of ropinirole, you could rotate it with codeine. However, we normally do not see tolerance develop to codeine. It may be that your RLS is a little worse simply requiring a little more codeine to treat it. An additional drug to consider is tramadol. Although it is classed with the opioids, it is quite different and may work better than codeine.

Before trying ropinirole, I would suggest that you consider gabapentin and see how that works for you. Lyrica is another choice that works more predictably as it gets more predictably absorbed.

A Reply from Anne

Sent: Friday, August 25, 2017 1:59 PM
Subject: Re: Ropinirole

 Are you saying that I could take Gabapentin 3 times a week? Or does it need to be taken daily?

Anne B.

A Medical Reply

Gabapentin can be taken a few days a week but most patients take it daily as tolerance or dependence does not occur and if it helps, taking it daily is a reasonable thing to do.

A Reply from Anne

Sent: Saturday, August 26, 2017 2:37 AM
Subject: Re: Ropinirole

Thanks for that information. And can I assume that if my doctor will only prescribe Ropinirole (which is what I suspect will happen) I could take that several times a week too?

Anne B.

A Medical Reply

My advice would be to stay away from the dopamine related drugs like ropinirole. You might find it very hard to stop once you start it.

Most doctors will readily prescribe gabapentin as it has been available for decades, they are very familiar with it and it is very inexpensive. That is a much better choice.

A Reply from Anne

Sent: Friday, September 1, 2017 1:41 AM
Subject: Re: Ropinirole

On the basis of your helpful advice, my doctor has prescribed gabapentin for me. However she has no experience of using this for RLS and was not sure of the dose I should take. Please could you give me some advice on this?

Anne B.

A Medical Reply

I usually recommend starting with 300 mg for patients 55 years old or younger, 200 mg for those between 55 and 65 and 100 mg for those older than 65. This dose can be increased every 3-7 days if needed to control symptoms (and assuming no side effects such as significant next day sedation) only if needed. Generally the maximum dose should not exceed 900-1200 mg.

The gabapentin is best taken 1-3 hours before bedtime or before the usual onset of RLS symptoms.

If the gabapentin is not effective (it often does not get absorbed well), pregabalin is another option.

Sent: Tuesday, September 05, 2017 7:15 AM
Subject: Diazepam for RLS

I have been taking Clonazepam 0.5 mg up to four a night for the last 20 years. I did have a year's break when I tried lots of the other medications but came back to Clonazepam as none seemed to work as well.

I asked my GP if i could try the equivalent does of Diazepam instead to see if it works better than Clonazepam. I believe the equivalent does is 20 mg of Diazepam to 0.5 mg of Clonazepam but my GP wanted to prescribe 2 mg, but I persuaded him to prescribe 5 mg up to three times per night . Could you advise on the correct dose please?

Lorraine R.

A Medical Reply

It is very difficult to equate clonazepam and diazepam doses as this can vary widely from person to person.

Also, it is not clear why you would want to make this change since both drugs are benzodiazepines and act on the same receptors. There is no benefit from switching from one to another. In addition, both drugs have an extremely long half-life and are not recommended for use as sleeping pills.

Your dose of clonazepam is already at the high end of recommended doses (likely due to tolerance of the drug) and the dose of diazepam is above recommended doses.

My suggestion is the same as previously and that is to wean off the benzodiazepine drugs and discuss other therapies with your doctor.

A Reply from Lorraine

Sent: Thursday, September 7, 2017 1:35 AM
Subject: Re: Diazepam for RLS

Many thanks for your answer.

I read somewhere that people taking Clonazepam for RLS would probably do better taking Diazepam as this is more effective for RLS! I do not use them as a sleeping pill. I have already tried very many of the other drugs suggested for RLS but none work for me (I get dyskenisia with the Parkinson drugs). I will perhaps ask my GP to refer me to a neurologist, although no one in my area in UK specializes in RLS.

Lorraine R.

A Medical Reply

I do not know where you read that diazepam is better for RLS as I have never heard that before and I doubt it is correct (except for a few anecdotal cases which can occur for any drug).

Again, the benzodiazepine drugs do not treat RLS symptoms but only help RLS patients fall asleep like any sedative drug. They would thus treat headaches, back pain, or any other discomfort similarly.

If the Parkinsonís drugs did not help your RLS (in addition to the other RLS drugs not helping), I would suspect that RLS may not be the correct diagnosis.

Sent: Thursday, September 07, 2017 2:06 PM
Subject: Changed from Requip to Mirapex

I have changed from Requip to Mirapex taking .50 in the evening. I am delighted to find out that my daytime and early evening symptoms seem to have gone. How can this happen? I did not know Mirapex would accumulate in the body if that is the reason.

Pippa P.

A Medical Reply

Mirapex has a longer half-life than Requip (8-12 hours compared to 6 hours) so it does last longer in your body. It therefore might help your early daytime symptoms but the evening symptom relief is more unusual. Taking the drug once a day should not cause it to accumulate (it is often taken every 8 hours for Parkinson's disease) unless you have an extremely slow metabolism for that drug.

A Reply from Pippa

Sent: Wednesday, September 27, 2017 5:54 AM
Subject: Instant relief

If I forget to take my Mirapex is there anything I can take when symptoms start instead of standing for an hour? OxyContin ? I used to use quinine in the past which worked well.


A Medical Reply

Taking the Mirapex is probably the best thing to do. Some patients might add a short acting oxycodone (OxyContin is slow release so will take quite a while to provide relief) if they have it available.

Quinine might help leg cramps but has not benefit for RLS.

A Reply from Pippa

Sent: Friday, September 29, 2017 6:17 PM
Subject: Mirapex

I have been on Mirapex for 6 weeks having changed from Requip. It was working great til now. My doctor says .05 which I am taking is the most I can take. What can I do now?


A Medical Reply

When Mirapex and Requip stop working, it is likely due to augmentation...those dopamine drugs actually cause the RLS to worsen over time after initially providing relief. Increasing the drug will provide relief for a while but will fuel the augmentation process making your RLS worse with time.

We typically suggest that you get off the Mirapex and the augmentation should calm down. This can be difficult and usually opioids are needed.

Attached is an article published last year by several of us RLS specialists which can help guide you and your doctor. However, it often takes some expertise to guide patients through this process.

Sent: Friday, September 08, 2017 3:50 AM
Subject: Knee surgery medications--2 questions

I'm age 70. My severe RLS (whole-body jerking due to augmentation) has been OK on 30 mg methadone for 5 years. I'm to have arthroscopic knee surgery in 2 weeks.

1) The orthopod told me to "expect extra pain than most people," because he doesn't prescribe a post-surgery opioid to people already taking one. (My periodiontist said the same about upcoming gum surgery.) What is the reason for this? I'm scared but resigned to the pain. I'm just curious, as I know arguing would be futile.

2) Do some anesthetics interfere with methadone? I don't want to wake up jerking! Should I warn the anesthetist not to give me some specific thing?

Sharon S.

A Medical Reply

The reason for the concern about adding opioids for post operative pain control is that most patients on chronic opioid therapy (especially high doses which is not usually the case for RLS patients) get somewhat tolerant to these medications and then need much higher doses. Therefore, many physicians are afraid to prescribe additional doses as the patients might get into the more toxic ranges of opioid treatment. However, in your case, the methadone dose (which is at the upper end of what most of us experts prescribe for RLS) should cover most of your post operative pain. The addition of Tylenol or ibuprofen usually takes care of the rest of the additional pain.

Anesthetics do not interfere with methadone. However, you may not be able to take oral medication for a while before and after your surgery so may not be covered for your RLS symptoms. They can cover the methadone (until you can take oral medications) with an injection of an opioid such as Demerol.

The more important issue is that anesthesiologists love to give medications that may worsen RLS. Therefore, please give them a copy of the RLS Medical Alert Card (which you can download from our website) as it lists all the drugs to avoid and gives safe alternative choices.

Sent: Tuesday, September 12, 2017 9:33 PM
Subject: Compulsive behaviors

I have been on Mirapex for many years with a fairly good results for my severe RLS ( arms and legs). I am on 1 mg. And unfortunately due to some severe degrading compulsive behaviors that I have developed, that I have learned that may ( many class action suits) be associated with Mirapex, I would like to try Requip. What is the associative dose to 1 mg? Do you folks add the hydrocodone with the Requip? Or just the Requip or just the pain meds? Should I consult a neurologist instead of my general GP?

Barely hanging in there,
Sheryl C.

A Medical Reply

Mirapex at 1 mg is quite a high dose. If you have RLS in your arms also, you are most likely suffering from augmentation (a worsening of RLS from long term use of dopamine drugs like Mirapex and Requip). The augmentation combined with the compulsive behaviors (which go away very quickly after stopping the Mirapex) are 2 very good reasons to stop the drug.

Mirapex is about 2-8 times more potent than Requip so you would need quite a high dose to replace the Mirapex. Furthermore, since it is also a dopamine drug, you would most likely still have the compulsive behavior issues (and augmentation).

Opioids are a good alternative but we do not use hydrocodone since it is always attached to another drug (like acetaminophen) which does not help RLS (so only adds risk without any possible benefit).

The best doctor to see would be a neurologist who is also a sleep specialist but even so, most are not that expert on treating difficult RLS cases.

With proper care, you should be able to do very well in the near future (but it may be hard to find that care).

A Reply from Sheryl

Sent: Wednesday, September 13, 2017 12:12 AM
Subject: Re: Compulsive behaviors

Sorry, in understanding your words Requip would have the same side effects as Mirapex? If so, the only other choice are opioids? Frightening. Does not one need increasing dosages of those for the same symptom relief? Oh my?!

Sheryl C.

A Medical Reply

You are correct that Requip does much the same as its cousin dopamine drug, Mirapex so should not be substituted.

Sometimes lowering the dose will help decrease or even eliminate the compulsive behavior. However, your RLS will still go crazy with the decrease so opioids will be necessary. It is better just to get off the dopamine drugs and stay off of them forever.

A Reply from Sheryl

Sent: Wednesday, September 13, 2017 7:38 PM
Subject: RE: Compulsive behaviors

The doctor just ordered me gabapentin Ö what do you think?
Will that be enough?

Sheryl C.

A Medical Reply

Unfortunately, when trying to get off Mirapex, gabapentin will be like adding a drop to a bucket of water.

Gabapentin works great for patients who have never been on a dopamine drug but is not potent enough to handle getting off Mirapex which will be very miserable for you without taking opioids.

A Reply from Sheryl

Sent: Monday, September 18, 2017 8:54 PM
Subject: Re: Compulsive behaviors

Can i stop the Mirapex cold turkey??. I have been taking .5mg instead of 1 mg for the last 3 or 4 nights ... (very hard sleeping, maybe getting 2-3 hrs / nt. )

I picked up my prescription for gabapentin tonight for 300 mg.... after questioning my doctor, can go to a max of 900mg . Do i slowly increase or after not sleeping for three or four hours can I take another 300 mg dose?

Sheryl C.

A Medical Reply

Whether you stop more slowly (prolong the misery) or cold turkey at this point will not make it easier. You will suffer for a shorter period of time if you stop cold turkey but without opioids, you may not be able to tolerate being off Mirapex. Whatever you do with the gabapentin, it will not help you very much. I generally start with 300 mg to 600 mg and increase to a maximum of 900 after a few days if there are no side effects (it will be very difficult to determine this while you are suffering extreme RLS off the MirapexÖmuch worse than what you are currently experiencing with likely no sleep).

You might do better if you can last the 10 days off Mirapex but that is not even guaranteed.

Sent: Tuesday, September 19, 2017 2:22 PM
Subject: meds with least side effects

I have recently been able to stop Mirapex. Day 12 now.

I have read that it takes 10 days to get to baseline. Can it take longer for some people?

I assume I will need to use another medication. I am currently taking 5 mg of oxycodone at night split into 2. This was to help me through the withdrawal.

I am extremely sensitive to medications and would like to be informed when visiting with my neurologist as to the best med to try first. I would appreciate any suggestions you may have. I know you can't give specific advice, I'm just looking for an order to try with least risk of adverse side-effects.

Mara R.

A Medical Reply

Although 10 days is the average, it can sometimes take several weeks or longer. The baseline may also have shifted upwards thanks to the Mirapex.

We most often leave patients on a low dose of an opioid such as oxycodone as the opioids, when used in low dose are actually very safe and effective even in the long run.

A Reply from Mara

Sent: Wednesday, September 20, 2017 7:45 AM
Subject: Re: meds with least side effects

To clarify, what do you mean the baseline may have shifted upwards? Do you mean that having taken Mirapex may have made my RLS worse?

Also, what do you consider a low dose of oxycodone for treatment of RLS? It is very helpful to have your expertise for when I meet with my physician. Do you recommend extended release oxycodone if symptoms are only during the nighttime?

Mara R.

A Medical Reply

Although the RLS may return to where it was before starting the Mirapex, some patients never get back to that baseline but instead have a permanent worsening of their RLS.

I consider 5-10 mg per day of oxycodone a low dose, 10-20 mg a medium dose and over 20 mg a high dose. I donít like to go over 30 mg per day but will sometimes go as high as 40 mg per day.

Since oxycodone last for only 4-6 hours, some patients do need sustained release oxycodone to get through the night without having to wake up and take more medication.

A Reply from Mara

Sent: Friday, September 22, 2017 6:45 AM
Subject: Re: meds with least side effects

I have been taking 5 mg of oxycodone for 7 days and for the last two or so have become somewhat anxious and unable to sleep at all. It helps with the RLS symptoms, but I am wide awake. This happened when I tried hydrocodone when withdrawing from Mirapex. Is this a side effect of all opioids? What would be your suggestion as to what to consider at this point?

I apologize for my continued questions, but am unable to get any support from my physician. Except for your input, I feel that I am on my own in trying to figure out what to do. Your willingness to respond is so very important to those of us struggling to find relief.

Mara R.

A Medical Reply

Most patients have sleepiness when they have a side effect from the opioid drugs. However, a few get the opposite effect and have trouble sleeping and can be anxious. It is difficult to know for sure whether your reaction is due to withdrawing from Mirapex (which might explain why it also happened with hydrocodone when you were withdrawing from Mirapex) but there is no way to be sure (unless you were back on Mirapex and experienced the same reaction with opioids (if you can remember having this reaction in the past with opioids not related to getting off Mirapex, that would be helpful).

If it is due to opioids, it can be somewhat of a generalized reaction. However, I often try several opioids and it is not unusual to find one that works without that alerting side effect.

A Reply from Mara

Sent: Sunday, September 24, 2017 5:02 PM
Subject: Re: meds with least side effects

I have now been off of Mirapex for 17 nights.

I told my neurologist that I was not getting relief from the hydrocodone or the oxycodone. (both at the lowest dose.) She suggested Benadryl, melatonin or a sleep aid, all of which I have tried in the past. Clearly, she is not aware that Benadryl is something known to exacerbate RLS. Melatonin cause insomnia and stomach upset.

Do you have any recommendations as to what I could suggest to my physician? She is the head of the neurology department in my state so it's not that she is not qualified. Just does not seem to know what to do for me. I only have RLS symptoms beginning in the evening through the night until early morning. I am very fortunate in that regard.

Mara R.

A Medical Reply

Unfortunately, even most excellent neurologists do not know how to treat difficult RLS patients.

The most effective opioid for treating RLS is methadone. You might need up to 10 or even 15 mg. However, we cannot be sure that you will not experience or worsen your current issues with anxiety and insomnia (only trial and error can determine that).

Adding Horizant or Lyrica in small doses may also help and enable a lower dose of opioids.

A Reply from Mara

Sent: Wednesday, September 27, 2017 9:31 AM
Subject: Re: meds with least side effects

My doctor has previously prescribed gabapentin. I tried it when I was cutting my .125 dose of Mirapex in 1/2 and it seemed to cause insomnia and then I tried to take it during the first days of total withdrawal from Mirapex and it seemed to make things worse, but it would have been hard to tell. So not a good controlled experiment.

Would gabapentin in addition to an opioid have the same benefit as Horizant or Lyrica and if so, at what dose of gabapentin? I would like to try it again because the opioids make it hard to function during the day even at the low dose. Or maybe it is because I'm just exhausted from still only getting a few hours of broken sleep.

I am hoping that I am still going through withdrawal and that my RLS will get better because my RLS symptoms are so much worse than they ever were before taking Mirapex. Before taking Mirapex, which I started in 2007, I had taken Luvox for postpartum depression for several years. I did not develop RLS until several years later. Just wonder if there is a connection? I know I am getting more depressed as the treatment "experiment" continues and that does concern me. Life is not much fun right now. I am not sure what I should do about that other than seeing a therapist which has been helpful in the past.

Mara R.

Your experiment with gabapentin may not apply at all since stopping Mirapex (as you already know) causes such an increase in RLS symptoms that most of your issues were likely due to withdrawal from Mirapex rather than side effects from gabapentin. The only issue with gabapentin is that absorption varies considerably and it is hard to determine whether it is getting in or not. Starting dose are between 100 mg to 300 mg and can be increased up to about 600 to 900 mg (higher doses likely do not get absorbed).

Sent: Wednesday, September 20, 2017 4:38 AM
Subject: Horizant side effects?

I was prescribed Horizant 600 mg once daily at five p.m.I was pleased with the results at first but now I am having some negative side effects. I am having trouble with memory and concentration, noticed I have trouble decreasing, weight gain and if possible developed cataracts in the last two months. I am aware this sounds like it could be caused by other problems but I want to get off this medicine and doctors I see in the United States.

Are unsure of how to withdraw from this. I tried just stopping and got little sleep and the restless leg syndrome symptoms got worse. I am sixty six years old, have emphysema, and am a widow. I tell you this in hopes it may help with your advice. I have been taking Horizant for eight months.

Cristina M.

A Medical Reply

The memory and concentration problems are quite common with Horizant. However, cataracts are clearly not related to taking this drug.

Speak to your doctor about decreasing the Horizant dose to 300 mg (don't break the 600 mg in half as it is a slow release tablet). That may work just fine and not cause those side effects.

A Reply from Cristina

Sent: Thursday, September 21, 2017 3:47 AM
Subject: Re: Horizant

I forgot to mention hair loss. I have lost half of my hair thickness and am concerned that even on 300 mg of Horizant the hair loss will continue too. I realize that Horizant may be best drug for restless leg syndrome and again there are trade offs but do you think that these side affects will lessen on lower dose?

Cristina M.

A Medical Reply

Although hair loss can occur with almost any drug, I have not heard of any cases (in my experience) of hair loss with Horizant. If it is due to the Horizant, it may be better at a lower dose. However, if it persists and gets better off Horizant then a change to Lyrica (works on the same receptors) could be helpful.

Sent: Friday, September 29, 2017 7:25 AM
Subject: Severe RLS

I am writing to you from the UK because I am at my wit's end. I have been enduring a major depressive episode since February 2016. In October of that year I was put on Mirtazapine, following an abortive course of electro-convulsive therapy: the drugs still in my system prevented a seizure, and I became too traumatized to continue. At approximately the same time, I began to experience an extremely unpleasant sensation in my foot on retiring to bed, as if it were fizzing, or tingling, and which would only be stopped by standing up and walking around. I did not seek a diagnosis at that time, but after Christmas, early in 2017, I went to my GP having done some research, and said I believed I was experiencing RLS.

She prescribed Pramipexole, .08 mg, at night, to be increased to two tablets after two weeks. Initially I experienced a little relief, but soon this disappeared, and on returning to another GP in the practice, I was told to double the dose. Which I did, and then experienced a truly terrible increase in symptoms, to the point where my arms and hands as well as both legs were affected, I was only able to sleep for 2-3 hours at night, and my depression and anxiety became so excessive that I ended up on an Acute Psychiatric Care Ward for two months.

During that time, an appointment was made for me to see a neurologist at the adjoining hospital. She recommended I take a three month course of ferrous sulfate, be allowed one codeine tablet of 30 mg at night, and start taking amitriptyline. She also believed my anxiety contributed to the severity of the RLS and this should be addressed.

The amitriptyline immediately exacerbated my symptoms, and I was at the same time put on Lithium carbonate . I have taken myself off the amitriptyline, even though my psychiatrist wants to increase the dose. I know this is the wrong course to take. If I could, I would also take myself off the Lithium, but then I would be without any medication all. I am no longer receiving a prescription for anti-anxiety or sleeping medication, as these were deemed to be for short-term use only, whilst on the ward, due to 'addiction issues' with this type of medication - not with me personally.

My situation feels so bleak. My feet and hands are numb and tingle constantly, day and night. I cannot sleep with my husband, as my movements disturb him. I cannot bear a normal cover over my legs or feet, only a sheet, and must lie with my legs elevated on a pillow with my feet resting on a 'cool-gel' mat, to try to ease the burning and heat. I hesitate to say this, but I very often have thoughts of harming myself or even taking my life. I am aware that most of my healthcare professionals believe it is 'all in my head' and are frustrated when I reject medicines like promethazine and amitriptyline seemingly willfully.

Tania B.

A Medical Reply

There are several issues contributing to your problems with RLS.

It is most likely that the Mirtazapine triggered your RLS symptoms. It is not clear why the pramipexole did not continue to help your RLS but it is not uncommon for it to actually worsen RLS with time (but it usually takes several months or years for that to happen).

Amitriptyline and promethazine are very high on the list of drugs (you can download our Medical Alert Card from our website or click the link to read the drugs that worsen RLS) that markedly worsen RLS. However, there are only a few antidepressant drugs that do not worsen RLS. Lithium may worsen RLS but it is not as bad as the other drugs that you have been prescribed. If an antidepressant drug is essential despite worsening your RLS, we often have to just work around it.

Gabapentin or Lyrica is a better choice than pramipexole to treat your RLS. That is, unless it worsens your depression (which can happen in a small percentage of cases). Codeine is somewhat helpful but most patients need a more potent opioid like oxycodone. If you can get your doctors to prescribe an opioid as potent as oxycodone (in low dose), you may be able to achieve excellent relief from your RLS.

Sent: Monday, October 02, 2017 7:38 AM
Subject: RLS and treatment with MEDICINAL CANNABIS based product

Calling again from .last 5 years. They were also used for PAIN management after a major hip replacement that became infected with STAPH Bug. FOUR attempts were made to get rid of the infection.(4 COMPLETE REPLACEMENTS IN 6WEEKS) Had to go on a multi antibiotic treatment plan for 18 months. Spent 10 weeks in hospital till the meds started to work.

PIC LINES and the best treatment BUT, Left with constant leg and hip plane. This is the reason starting OPIOIDS which gave me a better result with RLS. There are quite a few side effects with this treatment and I have heard that marijuana medicinal treatment may be a good change away from all the dopamine agonists. And other RLS. Meds. I have been using several recommended treatments and want a complete change from all the side effects.

Are you getting any results with the CANNABIS base products. I am 74 years old and would like a few better years to do the traveling and enjoy the rest of my life.

YOUR CARING advice to me in previous occasions has given me a most positive feeling. I have also received a copy of your MANUAL on RLS. I share it with my Doctors over here. Several comments were made with great surprise. I do hope we can make a difference to our suffers here. I have 3 of my children with RLS and several Grand kids (10) of them. They call me a bad genetic example to them.

Graeme H.
Western Australia

A Medical Reply

We do get some success with marijuana products however, they typically must be inhaled. The relief occurs quickly but lasts only about 1-2 hours. It may be helpful for patients who have symptoms only at bedtime (and typically, once they fall asleep, they do not do not have further RLS symptoms).

Therefore, it may only help part of your problem. In addition, inhaling marijuana may be harmful to your lungs.

There are other treatments that may be helpful.

Sent: Thursday, October 12, 2017 6:02 AM
Subject: Mirapex/tramadol washout

I have been on Mirapex IR from 2010. In 2015 I switched to Mirapex CR after a two week cold turkey washout period because of augmentation problems. One year later I added tramadol IR 100 mg (for the night) because of augmentation. However, augmentation reoccurred and at this time I am washing out both Mirapex and tramadol cold turkey because I want to switch to the rotigotine patch.

I am currently taking 20 mg OxyContin for easing the withdrawal effects and the RLS, but this seems far from sufficient (I have not slept at all since). Should I increase OxyContin dosage and how much? or should I maybe keep the tramadol in combination with OxyContin for the washout period?

Peter B.

A Medical Reply

I cannot give you any direct advice about doses of medications since I have not seen you as a patient.

However, I can give you some general advice. It may not be a good idea to switch to the Neupro patch (rotigotine) as you have already augmented on Mirapex CR and you are just trading one long acting dopamine agonist for another and augmentation would very likely occur.

You should discuss with your doctor changing to a combination of an alpha-2-delta drug (Horizant, gabapentin or Lyrica) with an opioid (perhaps methadone as it is a little better for most RLS patients).

Sent: Monday, October 16, 2017 5:15 AM
Subject: Methadone / Hydrocodone conversion

I am taking 5 mg of methadone at bedtime, and using a hot rice bag on my legs for my RLS. I also have a monthly flare up of severe breast pain for 7 to 10 days from an injury (a blow to the chest three years ago). It throbs a lot at night and keeps me from sleep. I remember that hydrocodone helped in the past (probably the Tylenol in it), whereas at the present time, the methadone really does not make any difference in my pain level.

Do you think I can smoothly substitute hydrocodone for methadone a few days out of every month? Can you tell me what dose of hydrocodone converts to 5 mg. of methadone? Would it be better to just use a lot of Tylenol along with the methadone?

If you do not feel comfortable helping me, please recommend what kind of doctor to go to. I can't find any doctor who will address this problem of breast pain from trauma (my foot slipped off the shovel when I was digging in the garden, and rammed my chest, hitting some breast tissue and ribs, probably caused nerve damage, my uneducated guess).

J. W.

A Medical Reply

Typically, most patients would need 7.5 to 10 mg of hydrocodone to replace 5 mg of methadone to manage RLS symptoms (but like anything else, your mileage may vary). As long as you only use one of the opioids per evening, there should not be a real issue with this regimen. The only problem may be your doctor who may not like prescribing more than one opioid at a time (which for most patients is a reasonable concern).

You could also try adding Tylenol, Advil or Aleve to the methadone and see if you get comparable pain relief to the hydrocodone with Tylenol.

The type of doctors that you might want to consider to see for your breast pain are general surgeons who do breast surgery or a pain management doctor.

Sent: Wednesday, October 18, 2017 3:30 AM
Subject: My Medication-Free Success with RLS

I am a 56-year old male weighing 250 pounds, and having struggled with RLS for nearly 30-years. I had previously spent a lot of time on your Support Group website looking for help, and wanted to share my success story in the hopes that other members may benefit from it. Feel free to post this entry and modify for clarity as you see fit. Please also feel free to email me back with questions you may have.

Previously, I had been on Pramipexole, and Gabapentin, both of which were ineffective at sufficiently controlling my RLS. As you may know, nearly each night would result in losing 2-3 hours of sleep until I became exhausted enough to nearly pass out and be able to sleep.

Often I'd resort to a large rubber mallet to thump up and down the back of my calves, to help alleviate some of the discomfort. At times when I'd logged only 3-hours of sleep a few nights in a row, out of desperation I'd take a Hydrocodone that had been squirreled away from a shoulder surgery. But admittedly, there were times that taking a Hydrocodone didn't help either.

Over the years I started to exhibit symptoms in the afternoon and in the mornings as well, and realized that an augmentation issue was forming and with consultation from my new sleep specialist, I stopped the use of both medications for a time. This made for a very difficult period, but after 2-weeks of being off the two medications I picked back up at lower dosages. Again, this helped, but not really that much.

Over the 30-years I'd average around 5-hours of sleep, with a bad night dipping into the 3-4 hour range. A good night was typically 6-hours, and I'd only log one 7-hour night of sleep per year. As a result I'd developed a great number of health issues that have links to sleep deprivation such as obesity, obstructive sleep apnea, diabetes, edema in my lower legs, memory issues, etc.

Last year I decided to try and get to the bottom of the RLS issue and started to see numerous sleep specialists, and with subsequent referrals it seemed like I saw a dozen or more specialists. With follow-up visits, it became difficult for me to log my required hours working from home.

After having several tests related to the edema in my lower legs, I had a consult with a Cardiologist. This Doctor made a comment that I had a lot of faith in pharmaceuticals, as evidenced by my 14 prescriptions that I was on at the time. I told him that I couldn't say that I had a lot of faith, but would certainly agree that I had a lot of need. Through the consult he had me try to cut back on the number of medications I was taking, and then asked me about my diet.

In that discussion, he asked that I stop drinking diet sodas and discontinue use of any artificial sweeteners. Thinking that I'd just spent a year going from specialist to specialist, I recalled the quote from Sherlock Holmes, as written by Arthur Conan Doyle: "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth." And so I decided to give this request a real try.

Sent: Saturday, October 28, 2017 4:56 PM
Subject: RLS, Pramipexole and MSG

I am under Pramipexole (Mirapex), without it I feel beyond terrible, truly bad. With a 1 mg tablet one hour before bedtime, and 0.25 mg at midafternoon, I am relatively OK, but I have learned to stay away from anything containing MSG (no processed foods, no artificial or even natural colors, sodas, meats (grass fed OK), no dairy tooÖ).

Google: Sneaky names for MSG and stay away from it all, your RLS will diminish, guaranteed.

I am mostly eating tuna (check the labels), salmon, shrimp, soups, fish, avocado, salads, beans, Ö home cooked natural meals.

Rolando C.

Sent: Monday, October 30, 2017 2:34 AM
Subject: RLS help for an HIV patient.

I think that I am driving my doctor crazy. I donít think that she has much education/experience with restless leg syndrome. I am HIV positive and on medications for that. I also have liver cirrhosis. So I must be careful of the medicine I take and how it metabolizes. I have tried Lyrica, trazodone and tramadol. None of these seem to be helping.

I have also done everything from soaking it in hot water, stretching, heating pads, exercise and I think just about every topical ointment that can be found. I understand that HIV positive people are 2 to 3 times more likely to get RLS then the general population. There does not seem to be any reports out regarding whether this could be medicine based or do you to the HIV infection. That being said, this onset of RLS came upon the changing of my HIV medications.

The doctor does not seem to want to give me the old medications that I was originally on. I will admit, that I borrowed medications from friends in order to see if they might work. The bupropion 300 mg extended release formula seemed to do the trick as it is a dopamine reuptake inhibitor. But upon checking that medication I found that it is metabolized through the liver and very hard on the liver so I do not believe this is a viable option for me as I have liver cirrhosis.

I have also tried oxycodone, this does allow me to sleep. Although, with all of the new rules and regulations regarding opioid, I am worried about the chances of being able to get a script for this. Does anybody have any options or resources where I can continue to deal with this. I go for days without any sleep and itís very nerve-racking.

Glenn L.

A Medical Reply

There are a few options for therapy to discuss with your doctors before resorting to opioids.

Horizant, gabapentin or Lyrica are often very helpful for RLS patients. These medications are excreted through the kidneys so liver problems should not be an issue.

An alternative would be the Neupro patch which does have liver metabolism but is ok for patients with mild to moderate liver disease.

There is not really a known relationship between RLS and HIV as far as we know.


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 117.
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