Patient letters on RLS symptoms and remedies- Page 71

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Sent: Saturday, November 04, 2006 8:32 AM
Subject: Switching dopamine agonists?

I am writing you again as my doctor has decided to try me on Permax. I was listening to your tape and you said there was a lady in the support group that became tolerant to Mirapex [which is what I was taking] and she switched to Permax. Now she switches back and forth. I am starting out on .05 and can take it a couple of times a day. I need to know if I can take neurotin[300mg] at night along with Permax. I am also taking 200mg of Ultram once a day for pain from my hip or back[ not sure which].

Betty H.

Medical Reply

Switching back and forth does work well for some RLS sufferers. If you are on Permax for any length of time, you should have an echocardiogram to look for heart valve damage (which occurs very uncommonly with this drugs but is a very serious problem). Neurontin can be taken with Permax.

Sent: Sunday, November 05, 2006 10:29 AM
Subject: Mirapex vs. Requip

I have just switched from Mirapex to Requip (about 8 days) and am not doing very well. My RLS symptoms are worse and I need to know if I should hang in there for awhile and hope it begins to work or if I should just go back to Mirapex. My symptoms on Mirapex were still daily but I would eventually fall asleep. Can't sit at night and read or watch TV or go to a movie...on either medication.

Patricia K.

Medical Reply

One of the problems when switching from Mirapex to Requip is that Mirapex is much more potent (on a mg basis) and most people need 2-4 times the mg of Requip to get comparable relief. This may simply then be a dosing issue. However, it is certainly possible (assuming adequate doses of Requip) that this drug may not work for you. In that case a switch to painkillers or Neurontin should be considered.

A Reply from Patricia K.

Sent: Friday, November 10, 2006 8:24 AM
Subject: Requip vs. Mirapex

I have been taking Mirapex for about 2 years for RLS with moderate success. I always have night time symptoms but have been sleeping ok. Still can't sit and watch TV but its not the end of the world. My doctor had me try Requip - started me with the starter packet which I just finished. I had a terrible 2 weeks and even took Mirapex with the Requip some nights...and began to have daytime symptoms even. I think I would like to stop the Requip and take only the Mirapex again.

Can I just stop the Requip and go back to Mirapex without withdrawal or do I need to "step down" from it? My doctor doesn't really seem to know much about any of this!

Patricia K.

Medical Reply

You can switch from Requip to Mirapex right away as long as you switch to an equivalent dose (a dose of Mirapex as effective as your current dose of Requip). As Mirapex is about 2-4 times as potent as Requip, you would need to take 1/4 to 1/2 your current Requip dose.

Since you were having some problems with Mirapex, you may either need a higher dose or multiple doses during the day. An even better idea would be to add painkillers (opioids or Ultram, although most doctors are somewhat squeamish at doing this) to get complete control of your RLS symptoms. With proper treatment, most all RLS patients can achieve virtually complete relief (and not have problems with their medications).

Sent: Monday, November 06, 2006 7:36 PM
Subject: RLS from mineral or vitamin deficiency?

Is it possible that if you suffer from RLS that you may have a mineral or vitamin deficiency? I am taking 2 mg of Requip and the last couple of days had RLS which I have not notice really before during daytime hours. Any help you can give would be much appreciated. How nice it would be to fall asleep before 11PM.

Bev M.

Medical Reply

You may be suffering from augmentation which is worsening of RLS due to taking Requip. Typically, the RLS starts occurring at least 2 hours earlier in the day compared to before you began taking the drug. The treatment is to take an extra dose of the drug 1-2 hours before the new earlier onset of RLS symptoms. However, if the RLS continues to occur earlier and earlier, then the Requip should be stopped.

Additional (or substitute) treatment with painkillers (narcotics or Ultram) should take care of your symptoms and let you fall asleep at your chosen bedtime.

Sent: Tuesday, November 07, 2006 7:20 AM
Subject: 47 years old and my future terrifies me

It is 12:30 A.M. and I am still awake, (tired but not able to lay down). I have recently changed at my disability companies request to a neurologist to treat my RLS instead of my primary care physician. I was taking Vicodin and Requip for my RLS and doing fairly well, now the knew doctor has replaced the Vicodin 500 (of which I took 4-5 nightly) in conjunction with 2 mg of Requip for 2 Darvocet, 4 mg of Requip, 75 mg Lyrica, and .50-.75 mg. of Xanax. During the day, I only take Neurontin 900 mg. or one of the 25 mg Lyrica, my problem does not get unmanageable until evening, or when I am confined like in a car, watching a movie, or in a meeting.

This is not working, I am miserable in the evening hours, from around 8:00 P.M. until 5:A.M.. I don’t know what to do!

Also, my symptoms are not typical in that my major problem is in my arms, not my legs. It has mainly been this way from the beginning, but there was a period where it was in my legs primarily and not my arms, but now it is my arms, (85% arms 15% legs). My neurologist struggles with this reality and seems to confuse him because it does not follow the standard RLS description. I describe my feeling as instead of creepy crawly feeling “HYPER energy in my arms) movement does relieve the symptoms but only momentarily.

I have been doctoring for about 8 years for this condition and after a series of changed medications, find myself here. Ultram worked good until tolerance issues became a concern in conjunction with augmentation to the day time in particular from 4:00 P.M. and after.

Should I worry about staying on pain pills at the fairly young age of 47?

How much is the maximum amount of Lyrica I should take? Lyrica works during the day time for me, but a the dose of 3 of the 25 mg. tabs, it does not help at all during the evenings at this dosage, but even a smaller amount helps in the day time.

Lastly I understand that RLS follows your internal circadian schedule, but do you think that possibly after all of these years of using either Ultram or Vicodin,

(Ultram up to 6-8 daily and the same amount of Vicodin,) I never mixed the Ultram or the Vicodin, it was either or. But my point is that I have read about RLS symptoms associated with opiate withdrawal, and I wonder if I were to completely detox from these family of meds, is it possible that the horrific feelings in my arms would go away.

Thank You for your kindness to share your expertise with us unfortunate sufferers.

Randy H.

Medical Reply

RLS is not uncommon in the arms. Usually the leg symptoms occur with the arm symptoms (and tend to be worse) but this is quite variable and some experience more intense symptoms in their arms or other body parts. Most RLS patients do not report the classic "creepy-crawly" symptoms but rather have description closer to what you describe. From my experience, your description of your arm's symptoms are very compatible with RLS.

Generally, we do not mix Neurontin and Lyrica together as they work quite similarly. Your dose of Lyrica is still on the low side (we usually need fairly high doses of the anticonvulsant medications to treat RLS symptoms) and you would likely get better results with higher doses (like 150 mg or more, assuming that you will not be limited to the higher side effects that tend to occur at these higher doses).

Requip doses should be increased slowly (to avoid side effects that occur with rapid titration). Changing from 2 mg to 4 mg can cause trouble and as the 2 mg dose is already near the plateau effect, increasing it does not benefit most RLS sufferers (individual mileage may vary). A change to Mirapex may be of greater benefit.

You are taking a fairly large dose of narcotics and it is quite understandable that your PCP would be getting somewhat anxious about the dose. However, decreasing your narcotic dose (changing to a lower potency opioid like Darvocet) is almost guaranteed to worsen your RLS symptoms. A better suggestion might be to change to a higher potency opioid (my choice is methadone which I feel works the best for most RLS sufferers). This should be taken in a steady dose (perhaps lower in the daytime when your RLS symptoms are less intense and in higher doses in the evening or when sedentary for prolonged periods) and likely taken together with higher doses of Lyrica (and possibly Mirapex instead of Requip).

Augmentation has been reported with Ultram (although this does not seem to be a very common problem) and I have seen a case or two of this problem. However, it does not occur with opioids and stopping the opioids does worsen RLS but only because the symptoms are no longer adequately treated (the narcotics are usually the most potent drugs for RLS). At the doses we use narcotics for RLS, it is extremely unusual to get increased RLS symptoms due to real opioid withdrawal (except for the above mentioned resulting lack of treatment of RLS off opioids).

Lastly, I would be careful using daily doses of benzodiazepines such as Xanax. If you need an aid to fall asleep, the non-benzodiazepines (Ambien, Lunesta or Sonata) are just as effective and much safer, especially for daily use.

The correct combination therapy generally works best and allows for the lowest dose of the more potent drugs such as the opioids.

Sent: Tuesday, November 07, 2006 5:18 PM
Subject: RLS and dopamine agonists and Lyrica

I get RLS pain.  I am taking 1 mg of Requip nightly but am avoiding taking the daytime dose my neurologist suggested. I am deathly afraid of what I will have to do when the Requip doesn't work anymore.

1) Is it a useful treatment to alternate the dopamine agonists when one stops working. How high can I go on Requip? on Mirapex?

2) Have you heard of patients who get pain in the quads (thighs) from Neurontin and/or Lyrica?

Thank you for being a resource for this community. there is a shortage of knowledge among some of your colleagues even the neurologists.

Steve

Medical Reply

Dosing Requip in split doses (2-3 per day) is quite common so you should have no major concerns about taking an earlier dose of this drug. When (and more importantly if) the Requip stops working (most RLS patients use steady doses for years), another dopamine agonist can be substituted (such as Mirapex although there are newer ones in the pipeline). I would not worry about alternating dopamine drugs at this point. The maximum dose of Requip per day is about 4-6 mg.

Leg or other muscle pain occurring due to Neurontin or Lyrica would be very rare as these drugs are used to treat nerve and muscular pain (which they usually do quite well).

Sent: Wednesday, November 08, 2006 10:09 AM
Subject: How long should I give Requip to kick in?

I’m a 45 year-old male. After a clean sleep study (no PLMS) but after complaining of leg twitches robbing me of good rest for two years (actually fasciculation, many of which can be seen, and legs feeling that they’re poised for a starters gun to fire although the muscles are relaxed), I was asked to start up on Requip. The intro doses made me nauseous and woke me up more times a night than my twitching legs usually do. I even took Requip with 10 mg of Domperidone to try to mute the nausea effect on my digestive system, which is sensitive anyway. How long does it take in your experience for Requip to kick in and show a benefit or not? How long does it take to accommodate Requip without nausea, usually? Are there better RLS “fishing” drugs that would be easier on a stomach prone to IBS-C, to help confirm a clinical diagnosis, even if I don’t stay on them long before trying Requip again?

I’ve had a clean MRI (lumbar, cervical, and brain), and negative upper right extremity EMG (I get that familiar “electric” discomfort in my right forearm and wrist too at times—not pins and needles, but like a current is going through the extremity). Serum ferritin of 56. No other bad lab tests except high esophagus pressure (nutcracker).

My twitching and electric feelings (or torment is a more correct term) started when given Lexapro 15 mg and Remeron 15 mg two years ago in combination for what appeared to be anxiety (which still may be present, but which my zappy legs definitely feed). Felt like I was popping popcorn in my calves within a day of starting Lexapro. I discontinued both AD’s 3 months later, but the legs (and sometimes arms and torso) issue persisted. Low dose (1/4 mg) Xanax often calms things down, but not always and I’m really reticent about increasing the dose as I don’t want to get hooked on anything. I found that Trazodone also drives the twitching and electric current feeling absolutely nuts, so I resemble RLS patients in regard to the serotonin AD’s I’ve tried.

Unfortunately, given the RLS criteria, I’m somewhat in doubt on diagnosis as I can travel for hours in a vehicle without needing to move my legs, I don’t feel compelled to move them even when uncomfortable, and moving them does not bring relief although I may forget they are twitching. However, many of the other descriptions of the sensations fit. Also, my uncomfortable feelings appear often after 4 AM and go well into the day, while late PM is usually my most restful. I can exercise and walk long distances without pain, exercise, and have reasonable BMI. I can never quite anticipate a good day in advance. Stress is likely to make the problem worse for a day or two. Does RLS sometimes respond to stress?

RLS is still a new diagnosis among the neurologists in my area, willing to throw Requip at the problem, but little else. Oh, to find a neurologists who was an expert on RLS AND benign fasciculation so I could get a clearer picture of what’s going on and answers to typical experiences. I’m not looking for diagnosis by internet, but just for information on typical profiles from an MD “in the know.” I’d like to know if I need to give Requip more time to work.

Dave M.,
Cedar Rapids, IA

Medical Reply

Most RLS patients who have never taken Requip will respond very quickly to small doses (usually less than 1 mg). However, it does not sound as if you have RLS. You must have the urge to move your legs; abnormal sensations alone do not count. Furthermore, the urge to move +/- abnormal sensation should get worse with rest (and be present only at rest) and improve quickly with movement. In addition, the symptoms should be worse at night.

Fasciculations have nothing to do with RLS. RLS does get worse with stress but so do many other problems.

I am not sure what you have but it appears that you will not benefit from Requip but rather just have to endure its side effects.

Sent: Tuesday, November 14, 2006 3:46 PM
Subject: RLS and hydrocodone?

I have had some RLS since I was 10 years old. I am 61 now and after increasing my dose of Wellbutrin XL 150 to 300 for depression, I began to experience nightly RLS. The dose of Wellbutrin XL was reduced but the RLS did not go away. I tried all types of medicine for the condition, but almost all caused nausea that interfered with my job. I was then prescribed Hydrocodone 10/325. I take one-half of one if I wake up with RLS and another 1/2 if I wake up again. I never take more than one caplet a day.

Are there any long term side effects of taking this medication nightly? My doctor says in the dose I am taking I will not become addicted, is that right? Addiction scares me but this is the only thing that helps me at all. I also started eating at night before I started taking the hydrocodone. I have never eaten when waking up at night but it seemed to help me get back to sleep (after about two hours - twice a night). Now it is hard to stop the eating. I suppose this is a habit and I will have to deal with it.

Medical Reply

Wellbutrin should not worsen RLS and in fact in some patients may help it. Other antidepressants often worsen RLS.

Your dose of hydrocodone will not cause dependence or tolerance or addiction. There is nothing wrong with taking the medication on a daily basis. There are other choices (such as Neurontin) that do not cause nausea.

Sent: Tuesday, November 14, 2006 6:22 PM
Subject: new meds

I’ve only been diagnosed with RLS for about 2 months, but have been having symptoms for about 8 months. I would say that I have fits of restless legs every night, some nights are worse than others, but my legs want to move all the time even when I don’t. Consulted with a doctor who diagnosed the RLS and prescribed Neurontin, I experienced no relief. We moved to the dopamine agents. I tried Requip first, no RLS but the nausea was awful. Then on to Mirapex, which did nothing.

Trying Permax this week. After my first dose, I was violently sick. What direction should I go next?

Jenny F.

Medical Reply

Both Mirapex and Requip work very well. They do cause nausea in some patients. However, there are ways around the nausea. First, start either medication again, but take it at the lowest dose and only increase the dose by 1/2 tablet each week. This slow titration will permit your body to adjust to the medication decreasing the chances of side effects. Stop at the lowest dose that resolves your symptoms (and by titrating slowly you may find that you need a significantly lower dose than previously).

Secondly, take the medication with food which markedly decreases the nausea side effects. When taken with food, there may be a delay of onset of the drug, so take them a little earlier.

If that does not work for you, then the next step would be to take a painkiller (opioid or Ultram) about 30-60 minutes before symptoms typically begin.

Sent: Wednesday, November 15, 2006 7:55 AM
Subject: Mirapex question

I have been successfully handling my RLS with Mirapex for several years now after seeing a sleep specialist. However, I now have a question regarding the medication.

Within the last 6 months, I have experienced muscle spasms, muscle weakness, lack of motion and some stiffness in my hands and sometimes my arms. I have been to my orthopedist, he has done labs, physical exam, etc., and can find nothing out of the ordinary. Therefore, he feels it may well be the Mirapex. I am taking 1.5mg a day, and have been at this level for sometime now, so there has not been a change in dosage or any other change to my environment that I'm aware of. His comment was that this would certainly be unusual, but not unheard of. I probably should note that I have also been diagnosed with PLMD, however these new symptoms are not like that at all.

A couple of years ago, I tried Requip, but never got through the "transition period" due to the fact that it felt like I had take no medication at all. Several nights were as bad as they have ever been before treatment.

So, before I try perhaps cutting back somewhat on the Mirapex or giving Requip another try, I would certainly appreciate your thoughts on this new wrinkle. As always, thanks very much for being such an outstanding resource for me!


Dave R.
Lexington, KY

Medical Reply

I have never heard of these symptoms being associated with Mirapex but anything is possible. In addition, if your dose of Mirapex has been stable, I would look for other sources of this new problem. Your dose of 1.5 mg per day is quite large for an RLS patient, but others on higher doses do not complain of your new symptoms.

The only definite way to prove that Mirapex is not causing the problem would be to stop it for a while (at least a few weeks). You could use opioids to cover your RLS for that time period if you deem this elimination trial worth trying.

Sent: Thursday, November 16, 2006 6:32 AM
Subject: RLS better with imipramine?

From what I have been reading on the patient's comments, both Mirapex and Requip are not the miracle drug they say it is. Too many side effects. I took Mirapex last year and had to get off it because of the frequency of urination. I wrote to you before about this and you also told me that the drug, imipramine, would augment my restless legs.

Well, I took your advise and got off it. My bladder still gives me problems and the doctor put me on imipramine again and guess what.........It has helped the bladder somewhat but I have not had restless legs for five (5) weeks now. I don't know what you can make of that but I am in Heaven. Perhaps because it is a drug used for depression but doctors use it for other reasons, it might be working on the nerves in my legs.

Whatever.....I don't know and to boot, urologist don't have a clue what restless legs are. Thanks for listening. If you have an answer, I'd appreciate it.

Margaret

Medical Reply

Generally imipramine and other tricyclic antidepressant drugs tend to worsen RLS. However, there are many exceptions to this rule (as is the case with everything in medicine and especially with RLS patients). Clearly, you are one of the minority who seems to benefit from this drug. We do not fully understand the reason that imipramine worsens RLS (although some think it may be due to the increase in serotonin that the drugs causes) so it is even harder to figure out why you are benefiting from it.

Sometimes trial and error is needed to find the correct medication even when it goes against common wisdom.

Sent: Friday, November 17, 2006 12:58 PM
Subject: Antidepressants and RLS?

I have a question about RLS and antidepressants. I need to find one that will treat my anxiety and depression and not create havoc with my RLS. My husband has COPD and heart failure, my mother died this spring, and my son and his family are not doing well. I work for a non-profit hospital that is not doing well financially and that's adding to the stress. I have health issues of my own. I have found myself thinking that it's just not worth it any more. I know I need medication, but everything I try that works just drives my legs crazy. I have read that Wellbutrin doesn't do this. I've tried it, but it doesn't do the job.

I can usually control my RLS with from 7.5 to 15 mg's of hydrocodone a day. I have been using this for almost 8 years without increasing the dosage. If I can't get relief at this dosage, I switch to Ultram (which doesn't work as well) for a few days. That usually works great and I can go back to the Vicodin. However, if I add a antidepressant to the mix, my RLS symptoms increase dramatically, start earlier in the day and require more meds.

Vicodin alone doesn't work. I have added Requip .25 mg and while it will control my symptoms, it makes me really drowsy and causes my daytime symptoms to get worse. Everything seems to wear off by about 2:30 a.m. leaving me really tired the next day. The antidepressant that works the best for my depression is Paxil. But it really kicks off my RLS. What else can I try? I really don't like feeling this way.

Thank you for you help.

Paula

Medical Reply

Other choices for your depression include trazodone and the secondary-amine tricyclic, desipramine. You may need these two medications in combination with Wellbutrin (make sure you use the XL and you may need more than the standard 300 mg). Only trial and error will let you know how well these drugs work alone or when combined.

Sent: Monday, November 20, 2006 6:55 AM
Subject: Do I have RLS?

My symptoms are not the norm. I have been having paresthesia for over 3 months. When I lie down is when they are the most severe. They range from tingling, numbing, to burning, stinging. I do get "vibrations" around the boney prominences and in my head. I have a negative c-spine and head MRI's, negative spinal tap, and negative EEG. Blood work all negative but did have ferritin levels at 20.

I just started Requip (had taken low dose Mirapex for 5 days without improvement). My husband does report leg movements at night. I don't feel the urge to move my legs at rest. I have only very slight symptoms during the day. RLS or not? If so, I have started to take the starter pack of Requip (last night was the 3rd dose).

I also am on Neurontin and occasionally will take Lunesta to get to sleep as the weird sensations keep me up. Any input would be greatly appreciated.

Medical Reply

There are 4 key criteria for RLS (see below) but the most essential one is the urge to move. Without that symptom, it is very unlikely that you have RLS. As over 90% of new RLS sufferers get relief from dopamine agonists (Requip and Mirapex), having no benefit from those drugs further indicates that RLS is unlikely.

4 diagnostic RLS criteria:

1) RLS patients must have an uncomfortable feeling in the legs (or other limbs, but the legs are the most common) which may or may not be painful but which causes them to move their legs to get relief. The discomfort may be the classical "ants crawling up the inside of the legs" but can be merely a pulling sensation, electrical feeling or actual aching pain. Some RLS sufferers can only describe it as a need to move the affected limb.

You must also have an almost irresistible urge to move your legs which may or may not be associated with the uncomfortable leg sensations.

2) The symptoms of urge to move your legs and uncomfortable sensations come on only at rest (sitting or lying down, but not standing).

3) The symptoms are relieved in part or completely by movement. The amount of relief from moving the affected limb may vary from moderate to complete elimination of the symptoms but the symptoms come back almost immediately after the movement has stopped.

4) They also occur only or are worse in the evening, especially when going to bed. As the RLS worsens, symptoms start occurring earlier in the day and may even then occur upon waking up in the morning.

Sent: Monday, November 20, 2006 8:41 AM
Subject: RLS better with Sleepytime tea?

Do you know if Extra Strength Sleepytime Tea can cause RLS? Twice I’ve tried the tea and wake up in the middle of the night with RLS.

Lynda E.,
Manitoba

Medical Reply

Caffeine is known to worsen RLS but Sleepytime tea does not contain this ingredient. Herbal tea should be neutral with respect to RLS, but each individual can have quite different responses to even benign substances (so anything is possible despite being quite unlikely).

Sent: Tuesday, November 21, 2006 7:31 PM
Subject: Requip and Melatonin?

I has RLS and my doctor put me on Requip 0.5 mg . I told him I have a hard time sleeping. I've been this way for awhile now. He suggested that I take Melatonin 3 mg, it dissolves under the tongue. I get it over the counter. It seems to work for me. He said it gets into your blood stream faster than taking sleeping pills that travel through your stomach. Have you ever heard of that drug?

Beth G.

Medical Reply

Melatonin is well known as an OTC sleep drug. It is fairly safe and works well for some people. Currently, there is a new prescription drug called Rozerem that acts on the melatonin receptors in the brain (but much better than melatonin, but is of course more expensive).

Sent: Saturday, November 25, 2006 10:24 AM
Subject: Depression/RLS question?

I hope you can give me some ideas for treatment of my depression and RLS! I'm a 59 year old female with fairly severe RLS symptoms, and I've had RLS since about age 12 or 13. My mother and grandmothers on both sides also had it. About two years ago I started taking Mirapex for RLS, and have had good results with it.

Chronic depression also runs in both families. For the past dozen years I've taken Paxil (paroxetine) which has been moderately effective for depression (I don't cry all the time but I don't enjoy life much either, and libido is totally gone). I've tried other antidepressants but have had problems with side effects.

And I've been having sleep problems for the last couple of years. I fall asleep easily, but after 2 to 3 hours I wake up and can't go back to sleep. I've been studying the literature on both conditions and I'm very confused about what to try. Requip instead of Mirapex? Switch anti-depressants? My GP doesn't have much experience in either field, and our local "sleep clinic" doesn't even do blood tests. I'd appreciate any suggestions!

SH
Near Seattle, WA.

Medical Reply

Since Mirapex is working well for your RLS, I would not change it (it should not interfere at all with your depression problems). Paxil may worsen your RLS but if the Mirapex is taking care of your RLS symptoms than that is not really a concern. However, Paxil does decrease libido.

Wellbutrin is an antidepressant that usually does not affect libido or RLS. If it is effective for your depression (and the only way to know may be to take it) then it would be an excellent choice for your depression and RLS problems. It may be taken alone or with another antidepressant such as Paxil. Since it appears that depression is now your major problem, it may be wise to get a referral to a psychiatrist who can better treat this disabling illness (most should be much better than your GP).

A Reply from SH

Sent: Saturday, November 25, 2006 3:10 PM
Subject: Re: Depression/RLS question?

Thanks for your suggestions on Wellbutrin as an alternative to Paxil. Right now, however, getting enough sleep is becoming a critical problem. I go to bed at 11-12PM and wake up at 3, unable to go back to sleep, and I'm exhausted. Does Mirapex ever cause insomnia? If so, would you recommend trying Requip instead, or something else?

SH

Medical Reply

Mirapex may cause insomnia (or increased sleepiness) in some individuals. Requip acts on the same dopamine receptors so it can be quite similar, but again, only trial and error will tell you for sure. Sleep is quite important for helping decrease depression, so you should discuss medications such as Ambien or Lunesta with your physician (if other measure do not help).

As your depression sounds as if it is very significant, you may need Wellbutrin in addition to Paxil or some other antidepressant (newer SNRI's like Effexor or Cymbalta).

Sent: Sunday, November 26, 2006 1:59 PM
Subject: All Calm for RLS?

Requip does not work for me, 0.5 mg dose. Is ALL CALM any good? Sleeping with pillow raised helps. Should I try Mirapex?

Frank O.

Medical Reply

Even when Requip does not work, there is a reasonable (but decreased) chance that Mirapex may help (and vice versa).

The product All Calm has been discussed on our website before. Although there are many anecdotal reports of people being helped by this product, there are no actual reliable (scientific or otherwise) studies that prove that it does help RLS. Until any such studies are done and published (hopefully in a reputable medical journal), it is my belief that this product (and likely all the other ones that are advertised as RLS cures or treatments) work through the placebo response (sugar pill effect) and currently have no other benefit or role for treating RLS.

Sent: Sunday, November 26, 2006 10:34 PM
Subject: Gastric bypass and RLS?

I had gastric bypass about 3 years ago I was told my body lacks b12 I been neglecting taking the b12 can this have something to do with my RLS I have now? I was 400 pounds now I am down to 220... it only seems in the last 9 months I have been doing the night leg jerks ... I have no symptoms the rest of the day.

Tell you the truth I would have no clue I even do it if it won't my wife telling me. And man am I driving her nuts.

Norm

Medical Reply

The problem that you have is PLMS (Periodic Limb Movements in Sleep). These are leg kicks which just like snoring may bother your bed partner but not necessarily bother you. Although most patients with RLS have this problem (there is no evidence from your letter that you suffer from RLS) it can occur alone or with other problems such as sleep apnea.

As far as we know, both RLS and PLMS are not associated with B12 deficiency.

Sent: Wednesday, November 29, 2006 7:23 AM
Subject: RLS - natural remedies

I live in Germany and have found that your pages are extremely helpful. Lots of my fellow sufferers in our support group are worse off than I am, and are on Siphrol, or even Opiates. I have been taking Restex (100 mg Levodopa and 28,5mg Benzerazidhydrochloride). Last year in October, someone recommended drinking Aloe VeraGel, and in three months I could reduce my nightly tablet by half. That stayed at that until someone recommended trying OPC (Oligomere Proanthocyanidine) 200 mg in a combi-tablet with 80 mg Vit. C, Citrus Bioflavonoide 320 mg, Hesperidin 100mg, Rutin 40 mg and Quercetin 20 mg.

After taking this and still continuing the Aloe Vera Gel for 2 months, I could reduce my Restex tablet to a quarter, i.e. 26 mg Levodopa every night. After a further 2 months, i.e. 4 months after starting OPC, I didn't need any medication at all. But, if I dare forget to take my OPC tablet, then my legs twitch so much that I can´t fall asleep. 15 minutes after I take the OPC, I can then fall asleep without any problems. I read somewhere that hesperidin passes the blood-brain barrier and has some connection with dopamine production. And that Parkinson's could be due to a deficiency of hesperidin.

Jean B.,
Germany

Medical Reply

Parkinson's disease is definitely not a deficiency of hesperidin. It can be easily demonstrated that Parkinson's disease is due to a measurable lack of dopamine in the brain. I also have no explanation as to why this product has helped your RLS. Until it is studied scientifically, we can only say that it is helping you but may or may not be of benefit to others.

Sent: Wednesday, November 29, 2006 7:29 AM
Subject: Help for my wife.

My wife has been diagnosed with RLS and is also experiencing extreme problems with insomnia.

This appears to be somewhat related to long term(4+ years), high dosage (highest patch level available) use of for pain Fentanyl, a quick switch to OxyContin (small dose for 6 weeks) followed by a complete de-tox from the Oxy/Fentanyl in a clinic.

Surgery eliminated the need for the narcotics - 18 months ago. We weaned down to the lowest Fentanyl patch over the course of a year. Tried a cold turkey, ended up on Oxy for a few weeks and then checked into a detox facility.

The detox was completed 6 months ago. For about 60 days she had no issues. Then both the extreme RLS and insomnia hit at once. We have managed to contain the RLS with Neurontin (1400 - 1800 mg a day). She continues to use some trazodone to try to get to sleep.

We have tried a number of sleeping aids, most really screw up her digestive system or they don't work at all. The insomnia is making her crazy. The current cocktail is 3 mg of lorazepam and 10 mg of "Gravol" (anti nausea). This provides 4 hours of decent sleep. Typically she can sleep well only 1 day out of 3, usually because of exhaustion.

Questions

Is RLS a common narcotic withdrawal side effect?
Do you know if insomnia is a common narcotic withdrawal side effect?
How long does it last?
Why does it happen?
Does it get better?

Gerry E.

Medical Reply

Narcotic withdrawal should not cause RLS symptoms. Often, narcotics are given for other conditions (arthritis, back pain, etc.) and while treating the underlying problem also treat RLS symptoms (which may then not be apparent as they are being treated). When the narcotics are withdrawn, it may then seem like the RLS symptoms have suddenly developed as a result of their withdrawal. However, in your wife's case, the 60 day interval without RLS problems preclude this issue.

Narcotic withdrawal should only cause insomnia for the first several days of acute withdrawal, not weeks later. The insomnia likely has another cause (that does not sound like RLS as that is under control) which may be hard to determine although a good sleep specialist may be helpful.

Be careful with Gravol (dimenhydrinate generic or Dramamine here in the USA) is a potent antihistamine/anti-nausea medication that has a very strong tendency to worsen RLS.

Sent: Saturday, December 02, 2006 4:50 PM
Subject: PLMD and RLS?

A Combination that works:

I have severe PLMD and RLS and have had two sleep studies to confirm this. I have tried many different drugs. The best combination that I have found that treats both the insomnia and the symptoms are a combination of Requip, Klonopin, and Gabitril. I take all three. 1 mg of Requip, 1 mg of Klonopin and 4 mg of Gabitril before bed. This is the only combination that has worked for me.

I was so relieved to finally find the right combination of meds to deal with the PLMD and RLS. I was on the verge of exhaustion and had reached the point of being disabled and nonfunctional. I was so exhausted that I stuttered, couldn’t remember anything, was too tired to do normal tasks, let alone work. My muscles were always stiff and uncooperative after years of no rest and I had developed high blood pressure. I feel rested for the first time in about six years.

Sheila

Medical Reply

Be careful with Klonopin. It works great in the beginning but can cause dependence and tolerance with time. Also, with a 30-40 hour half-life, it can cause daytime sedation (which may now not be obvious to you compared to your previous stuporous state from lack of sleep). There are better shorter acting sleeping pills.

Sent: Sunday, December 03, 2006 4:26 AM
Subject: RE: PLMD and RLS

A Reply from Sheila

I have tried other drugs for sleeping and have investigated and found that some of them actually cause RLS to worsen because of how they act on the brain. Klonopin and Gabitril are also used for seizures and I have often wondered if there is a link between severe PLMD and seizures. Do you know?

Sheila

Medical Reply

There is no link between seizures and RLS or PLMD. However, most all anti-seizure medication seem to help these conditions (as they do many other unrelated conditions).

Sent: Wednesday, December 06, 2006 10:52 AM
Subject: Do I have RLS?

Hopefully this site can answer my biggest question and that is whether I have RLS or not? Quick background. My RLS(?) only tends to bother me when I try to sleep. It is mostly an annoying dull ache right below the knee on the outside of the leg or right below the elbow on the outside of the arm. It switches from side to side. Basically the aches drive me nuts, just totally ticks me off to the point where I want to punch the walls.

No pain pills will put the slightest dent in the aggravation the RLS causes. The doctors put me on a fentanyl patch over 18 months ago for pain and when I tried to wean off it the RLS went crazy. If I bump my dosage to 50 mcg/hr it tends to relieve the RLS. But fentanyl is an opiate. Most of what I have learned up to date is that doctors tend to treat RLS with opiates.

Any suggestions?
Kevin

Medical Reply

Your description includes many of the features of RLS. However, in addition to the leg and arm discomfort/pain occurring at rest, you must have an irresistible urge to move the affected limb. The movement should provide partial or complete relief but once at rest again, the symptoms should return. If you do have these additional features, then you have RLS.

Opiates do treat RLS very effectively but they are not the drugs of choice for this disorder. The dopamine agonists, (Requip and Mirapex) are the drugs of choice that should be used before attempting the use of opioids for this problem. In fact, very few doctors use opioids for RLS which causes patients with severe RLS who need these medications great difficulty.

A Reply from Kevin

Thank you VERY much.  The more I looked into it the more I was sure it just
wasn't RLS.  Not sure what it is but now I now it is NOT RLS.

Sent: Wednesday, December 06, 2006 11:53 AM
Subject: Is this RLS?

I sent an e-mail earlier but did not give all the details of my medical history. I am a 42 year old female. My symptoms started 3 months ago. I went to bed one night and started having paresthesias in my left lower leg. These sensations moved up the left side of my body (trunk, arm, neck and head). Then, just as quickly went down my right side.

My symptoms are worse at night and much better first thing in the morning. Most of the symptoms are in my lower legs, both hands. I've had a lot of work up down including MRI's of head, neck and lumbar spine. All tests negative except 2 discs in lower back hitting nerve roots. All physical test are negative, spinal tap negative and blood work negative except iron levels at 20. I have seen 2 neurologists, one whom thought it was RLS.

I started Mirapex for 5 days. Did not have any improvement. Now am on Requip (the 2 week starter packet). Could this be RLS? I don't have the urge to move but do try to put pressure on the areas that are "buzzing". My husband says some night when I'm asleep, I move my legs like I'm running in place. The other question is: "How long before symptoms completely subside with medications (Requip)?

Any feedback would be greatly appreciated,
Shel from KS

Medical Reply

It is very difficult to diagnose RLS without the irresistible urge to move. Furthermore, although some patients will use pressure (rubbing, wrapping bandages, or other counter measures) for relief, the best relief is achieved by movement of the affected area (or just plain walking) and stopping the movement quickly brings back the symptoms. If you do not have these features (and from your description, you do not) then it is very unlikely that you have RLS.

Furthermore, over 90% of RLS patients respond (within a few days or less once the optimal dose has been achieved) to dopamine agonists (Mirapex or Requip) usually at reasonable low doses (Requip at about 1 mg or Mirapex at .25 mg).

Sent: Saturday, December 09, 2006 9:41 AM
Subject: Mirapex side effects?

I am a 63 year old college mathematics professor. Won my college's main teaching award back in 1987. I have had RLS since I was a teen-ager, though I didn't know what to call it until the last few years. I discovered a brochure in my Sleep Apnea doctor's office. He began me on something else, started with an N. Worked great for a few weeks, then nothing at all. Switched to Mirapex, four .5 mg tablets each day. (Generally in the evening.)

Last two or three years, have developed what he calls "Phase advance". Wake up at 4 am, regardless. He suggested Sunbox, which I bought. But became department chair at the same time and decided I needed to get up at 4 am anyway. Three years later, I am fine when on vacation, no problems with drowsiness during the day though I still wake up early.

But during the school months, find myself listless, tired, and unmotivated virtually all the time. Doing a very poor job at work, afraid I might even lose tenure. Couldn't disagree with the dean if he decided that. I have thought it just due to getting old and burning out as a teacher, but wandering around today with Google suggested to me that perhaps it has something to do with the Mirapex.

My wife jokes that I'm addicted to EBay, which I also see is possibly connected with Mirapex. Maybe I'm just using it as an excuse. Have to admit that would be convenient. But I sure would like to feel better. What do you think? Should I ask my doctor to switch me to something else?

Mark T. 

Medical Reply

The first drug was probably Neurontin.

Impulse control/obsessive compulsive disorders have been associated with Mirapex but they are very uncommon and occur mostly (only a few cases with RLS) with Parkinson's disease and much higher doses. However, you could still do a trial off the Mirapex to see if it may be responsible for some of your current ills. You should be ready (discuss this with your doctor) to go on an opioid for this trial period otherwise your untreated RLS will become a real problem.

Sent: Saturday, December 09, 2006 8:58 PM
Subject: Problem patient?

I've written to you a number of times... whenever I feel I'm at the end of my rope. You've always helped. A brief history: I'm 51, female, suffered from RLS for 10 years. I've tried all the meds used for RLS from amitriptyline to Sinemet, Permax, Requip, Neurontin, Lyrica, Ultram, even Cymbalta to name a few. Currently I'm using Mirapex/Lyrica/hydrocodone. I'd asked a year ago what to do because the 1.5 dose of Mirapex was causing severe augmentation.

You suggested methadone, which worked great except that even at a very low dose (5 mg) I had such severe side effects from it (nausea, sleepiness and later panic attacks) I had to go off it. I'm still on .75 mg of Mirapex but it hasn't been working well, even the hydrocodone (10/650) wears off in 4 hours (and I have a lot of break through).

This past year, life has been very hard with RLS, it controls my whole life, I suffer from a lot of depression and even though I don't think I could ever take my own life, at times life just doesn't seem worth living. My doctor here is very leery of my using opioids, and to go on schedule 2 drugs like methadone I have to see a specialist (who only comes to my area once a month) but even he is hesitant to put me on these drugs because he knows nothing about RLS.

I seem to be very sensitive to drugs, I realize that I fall into that small group who don't tolerate dopamine agonists well and just don't know where to turn next. You always say that help is out there, that no one has to live in misery with RLS, but I seem to be the exception.

Brenda

Medical Reply

It is quite likely that you are not one of the exceptions to my rule that no one has to live with the misery of RLS (and unfortunately, there are some exceptions to all rules, including this one). It is more likely that you are just not receiving the most up to date treatment for your RLS (likely due to the lack of local expertise).

Just to clear up a few issues (that may not really be directly applicable to your case and problems). Amitriptyline and Cymbalta are not RLS drugs but rather antidepressant drugs that usually worsen RLS. Wellbutrin and trazodone are the only two proven "RLS friendly" antidepressant drugs.

My advice (and this may be hard for your local doctors to follow) would be to take you completely off Mirapex for one month (to help reset the dopamine receptors). You would need higher doses of a narcotic and since methadone caused side effects, you would have to try oxycodone, levorphanol or hydromorphone.

After a month, a would re-introduce a dopamine agonist, either Requip (more likely just for a change) or Mirapex at low dose and keep them in a much lower range than before (which may help avoid a repeat of your augmentation). You will likely still need some opioids, but possibly at lower doses.

If sleeping is still a problem, then you should add a non-benzodiazepine sleeping pill (Ambien or Lunesta).

Sent: Sunday, December 10, 2006 11:34 AM
Subject: RLS not better with Mirapex?

I have been taking .25mg of Mirapex 4 times a day with a Neurontin at bedtime. This is not working as I have RLS every evening and late into the night. I tried Requip once using the starter kit and only taking one at bedtime. This did not work.

Do you think that if I took it several times a day [I am bothered during the daytime too] at a higher dosage it would work? What dosage would you suggest? Narcotics mess up my stomach. I need help.

Medical Reply

Mirapex is really a 3 time a day medication (does not hurt to take it 4 times a day, but with the correct dose, 3 times is all that is necessary). If your daytime RLS is being controlled, then you may need to only increase the evening dose of Mirapex. Remember that the drug takes 1-2 hours to start working (add an hour if taken with food) and it is better and easier (smaller doses needed) to prevent symptoms rather than to take higher doses to try to make active symptoms go away.

Changing to Requip may or may not be helpful. I would first try my above suggestion with Mirapex. If you were to change to Requip, remember that it is only 1/4 to 1/2 as potent as Mirapex, so you will need 2-4 times the dose in mg to treat your RLS.

Although narcotics can be tough on some people's stomach's, some are worse than others (this can be a very individual thing). You may have to try several to find one that you can tolerate (and it may be worthwhile to do so to control your RLS). Ultram is a non-narcotic choice that may not upset your stomach.

The anticonvulsants (Neurontin, Lyrica, etc.) may be another choice.

Sent: Saturday, December 16, 2006 10:09 AM
Subject: RLS from the Central Nervous System?

I have had RLS for 43 years. Some observations I have made is that NO ONE seems to relate Nervous Leg Syndrome (old terminology) with the NERVES, part of the Central Nervous System. I know that when one part of my back is out, my RLS is with me nagging me constantly. Why no will believe this is not a nerve problem borders on the ludicrous. Let me go through the reasoning:

!. Leg (usually right, but not always) starts its creepy-crawly sensations.

2. I feel a tightness/ tension / odd feeling near my backbone, approximately below and under the scapula. Agreed – this is not where the nerves in the back are “hooked up” with the nerves in the knee, but it is always the same and I have been told by several chiropractors that it is putting a torque on my back causing the nerve lower down my spine that is connected to the old knee/leg area to act up ( “Oh no, not one of those (gasp!) CHIROPRACTORS! Charlatans!!”)

3. When my back is in I do NOT have any symptoms of RLS. But it slips out screamingly easily.

4. HOT showers on the back seems to help me (and it does others of your chat room)

5. Clonazepam works, but I have continued to have to increase my dosage over the last 5 + years I have been taking it to get relief.

My hypothesis:

Back is out

Hot showers on back bone relaxes muscle and nerves and affords relief

Walking helps (walking and being upright relieves the pressure to the nerve in the back)

And:

Leg/knee feels like the imps of Hell are running amok with perverse delight; which would mean that a NERVE (one or more) is acting up. (There can be no movement or sensation in the leg without an electrical/chemical stimuli to the nerves. True?)

Chiropractic adjustment relieves all symptoms:

Therefore my conclusion: The nerve(s) in the back are being “pinched” and making a simple adjustment of backbone to relieve pressure is therefore logical.

Problem:  After time bones wear down, muscle tone diminishes, and slippage accelerates, causing RLS to become more acute with time and age.

Yes, I really do have RLS. I have been insulted enough by being told that if it is related to the nerves in my back being out I must have something different. (As if the nerves that cause twitching in an eyelid, cheek, arm, leg, or anywhere are NOT connected with the nerves that run up and sown the CENTRAL NERVOUS SYSTEM.

Why will no one take this into account? Is it because the “Medical” doctors still think of Chiropractors as basically snake oil salesmen preying on the unsuspected, even after YEARS of factual, reported and studied relief given to millions of people worldwide?

Cannot the “Medical” professional work with, and accept, the knowledge gained by a hundred years of study, research and use of spinal manipulation done by Chiropractors? They accept manipulation done by massage therapists and physical therapist. And please don’t say that “in the past there have been dubious practices and Chiropractors that have done real harm to people.” I really don’t think we want to go into the past of the ‘medical professional’ that have done real damage to countless individual over the centuries. Years of experience and new information have improved both fields.

Well? Now what?

Medical Reply

Nervous Leg Syndrome has never been an accepted (one used by medical doctors, researchers and scientists) name for RLS but is one of the names that patients use (and it is even on our website's list of pet names for RLS).

In fact, most of the experts in RLS do believe that this problem does originate in the CNS (Central Nervous System) and thus there is no disagreement with your thinking on this matter. The only question is where in the CNS does it come from (brain or spinal cord). There is conflicting data already available from brain and spine imaging studies to support both hypothesis, although it appears currently (and of course, this is subject to change as more research becomes available) that the brain is the more likely site.

Your symptoms and techniques for achieving relief are very common and well known to doctors and scientists in the field who have examined these issues and tried to figure out the cause of RLS. Most physical approaches that help RLS probably help by being a counterstimulation (similar to relieving pain after hitting your thumb with a hammer by shaking your hand). Stimulating other nerves in the body do send impulses to the brain and spinal cord and often result in improvement in discomfort in other areas (which may account for some of the success of acupuncture and chiropractic treatments).

The problem with chiropractic treatment for RLS is that (despite your personal experience) the vast majority of RLS patients (well over 95% when looking at large groups or RLS patients) do not get any benefit from these treatments. If this treatment works for you then you should obviously continue with it. However, it is difficult to recommend it for RLS patients in general as only a very small (few percent at best) respond.

In addition, be very careful with clonazepam. It can be a very habit forming medication especially when tolerance (as in your case) is already occurring. If you do decide to go off this drug, it should be very slowly weaned (over several weeks). There are newer and much better treatments for RLS that do not expose you to the risk of tolerance and dependence.

Sent: Saturday, December 16, 2006 11:35 AM
Subject: Discontinuing Requip?

I am a 50 year old male and I am certain I have been suffering from RLS for most my life but it seems to be getting worse. My family doctor prescribed Requip last summer. I worked up to, and leveled off, at 1mg dosage. Although it seemed to help with the main problem of sleeplessness it did not help in restlessness. After taking the Requip at 8, 9, or 10 pm, I’d be crawling all over the place within an hour; I could not sit still and enjoy a TV show; It was worse than before having started it. Yet, I’d go to bed and 75% of the time, I’d sleep OK.

Since the Requip didn’t seem to work in allowing me to sit comfortably, I decided to titrate DOWN to get back off the drug, figuring I’d try to work the sleeplessness with better lifestyle choices (eliminate caffeine, increase exercise, etc…) and just cope with the lack of being able to sit still as I’ve done all my life. I found discontinuing the Requip is difficult. On those nights I had trouble sleeping, I’d get up and take ~.5 mg, to help sleep. After splitting most of my remaining 1mg tablets into halves, I quit.

Now, my sleeplessness is real bad. I’ve been off the Requip for approximately a week now but I can tell there is something tweaked by my taking that drug for the 5 months or so I was on it. This adverse feeling was as strong last night as the first night off the med. What is your thought on this?

Does taking Requip have the ability to permanently affect the brain? Does it stay in the system or affect the brain for a very long time after discontinuing usage? What might I do to get some rest? It’s affecting my family life and my career. I also hate to try and convince my doctor I need sleeping pills to get some immediate relief. He fights me on it and wants to prescribe antidepressants. It’s not depression keeping me up; its lack of sleep that’s causing depression!

Kevin M.

Medical Reply

Requip should not help put you to sleep (unless it is causing sleepiness as a generally unwanted side effect). The main purpose of Requip is to reduce the limb restlessness so that you can fall asleep (since you should then no longer be bothered by the urge to move and the crawling sensations).

A very some percentage of RLS sufferers seem to get a paradoxical worsening of RLS when taking a dopamine drug such as Requip. The mechanism of this is not understood but it may have something to do with down-regulating the dopamine receptors (which may account for the augmentation problem with longer term usage of dopamine based drugs). There is a chance that changing to Mirapex (the second and recently FDA approved dopamine agonist drug) may be better but you do run the risk of worsening your RLS again.

If the Requip has affected your dopamine receptors then it usually takes 2-4 weeks until they return to normal. The drug otherwise leaves your body completely within about 30 hours.

Alternative treatments include Neurontin (or better yet the newer Lyrica) or the painkillers (opioids or tramadol). Sleeping pills do put you to sleep (of course) but are better used on an intermittent basis (only when really needed). Do not take antidepressants as almost all of them make RLS worse.

Sent: Wednesday, December 20, 2006 2:09 PM
Subject: Injury induced RLS?

Thank you for the opportunity to contact you and request information. My question is ... can RLS be brought on by a back injury, specifically disc injury.

I had a serious herniated disc at L5-S1 and have facet joint damage in that area. Immediately following the injury I started experiencing RLS symptoms, which I originally called "tics". I had never had this before. I had my blood checked for iron deficiency, etc and it was normal and I don't have a family history of RLS.

Could you provide me any information you can on whether a back injury can cause or trigger RLS.

Eileen

Medical Reply

It seems to be very common that RLS patients report the onset or worsening of symptoms after trauma to their body, especially spine trauma (injury or surgery). Some experts believe there is no connection between these events but many patients have found this to be the case. Until a study is done, we cannot say definitively that there is a direct relationship. It may be just that the spine trauma is memorable and thus becomes an easy way to date the onset or worsening of the RLS symptoms.

To properly check for iron deficiency, a serum ferritin level should be done. Other measures of iron are not sufficiently sensitive to pick up the type of early iron deficiency that may be associated with RLS.

Sent: Wednesday, December 20, 2006 11:38 PM
Subject: Buy or rent? Cost of green chair in the Requip TV commercial?

Is it the chair or the machine she is using in the Requip TV commercial that helps RLS? If so, what is the cost?   Should I rent or buy?  How does it work?

Candy

Medical Reply

The green chair is just a prop for the commercial. It has no other purpose and does not help RLS in any way.

Sent: Friday, December 22, 2006 2:41 PM
Subject: RLS and Peripheral Neuropathy?

I've just discovered your web site and hope it is still operational, since some of the e-mails date from 1998. In any case, I've been diagnosed with Idiopathic Sensory Peripheral Neuropathy, say since 1999. My Father had RLS and I seem to have it too. Is there some relationship between Peripheral Neuropathy and RLS?

I cannot sleep, walk all night for a week - 10 days, and then get a few nights respite from the pain and need to move my legs. I do not have the creepy, crawly sensations many say they have. However, with the neuropathy, I have numbness, stabbing pain, and electric shock pain.

Currently, I am on Klonopin .5 mg, but that is being increased to 2 of the .5 mg tablets, and I am being slowly withdrawn from Neurontin 400mgs. 5 per day to then start on Keppra. I am somewhat concerned about dependency or tolerance. After being established on Keppra, should I take holidays from Klonopin do you think?

Amy

Medical Reply

About 10-20% of RLS patients do have problems with neuropathy. This can make the problem worse and more difficult to diagnose.

Be careful going off Klonopin as withdrawal problems can occur. Klonopin is a sedative and does not really treat RLS or neuropathy. You should speak to your doctor about stopping the medication.

A Reply from Amy

Sent: Monday, January 01, 2007 10:26 PM
Subject: Re: RLS and Peripheral Neuropathy (PN)?

Thank you for your reply. Today is my last day at this e-mail address as I am retiring after 30 years and 6 months of Government service -- rather surreal to say the least not to have a job to go to in future.

Anyway, regarding Klonopin, it was the chief of neurology, my doctor, who prescribed it for me for pain, she said, along with Neurontin. I've now successfully tapered off Neurontin, and have just started Keppra 500 mg. to replace it. My doctor has indicated that since my pain has increased, it is ok to increase Klonopin to 2 - 3 tablets per night. It does help me sleep, but I will talk to her about coming off Klonopin. If Keppra works, it should control pain, I guess? But all of these drugs seem to have many negative side effects, which so far, do not seem to be present. But I've just been on Keppra since 12/30/06 -- early days yet.

He felt it was important to help other people with RLS; although, he was not helped by the research. As far as I know he did not have PN, but was told he also had Parkinson's-like symptoms. Is there a relationship to Parkinson's with either RLS or PN? I was told my PN is Idiopathic sensory PN; I do not have diabetes.

Thank you again. It is really great to have a web site to go to for information, which is devoted to Q&As, because until recently, there has not been much out there, and I think to ask my doctor questions after my appointment.

Amy

Medical Reply

Klonopin does not really do any pain control (except to decrease the anxiety associated with pain). It can be a very addictive drug (I have many patients who have had great difficulties getting off the drug). The are much better drugs (Ambien, Lunesta) for sleep.

RLS is more common in PD (about twice as common) and PN is associated with both PD and RLS.

Sent: Friday, December 22, 2006 3:16 PM
Subject: RLS treatment with calcium?

I'm 43 years old and I've had RLS since I was 25yrs old. I've always taken about 1200 milligrams of calcium when it wakes me up at night and can always go back to sleep most of the time (it may take a double dose during my menstrual cycle). If I take the calcium before hand, it won't work for me. I have to wait and take it right when it wakes me up for it to work. I'm back to sleep with in 20 minutes.

I don't always get awaken with my RLS. I just keep a bottle of water and a few calcium pills at my bedside in case of an attack. I saw a nutritionist and tried her magnesium suggestions (or 1/2 cup of orange juice) and finally went back to my calcium cure. I usually get the large bottles of the Kirkland Brand from Costco but recently did not renew my membership and tried a calcium/magnesium combo from Nature-Made and it's working just fine!

Medical Reply

This many not work for everyone, but maybe it will help someone like me who doesn't want to go to prescription drugs if a calcium pill works. Best of luck and may you sleep like a baby!

Thanks for your suggestions on what works for your RLS. Unfortunately, calcium does not help the vast majority of RLS sufferers (but it should help prevent osteoporosis).

Sent: Wednesday, December 27, 2006 2:56 PM
Subject: Provigil for RLS?

Is Provigil ever used to treat RLS?

Vera P.

Medical Reply

It is only used to treat daytime sleepiness (which may be due to sleep deprivation from the RLS or other unrelated problems).

Sent: Friday, December 29, 2006 6:43 PM
Subject: Restex for RLS?

I am suffering from RLS. I tried Mirapex and Requip and couldn't get along with either one of them. Requip screwed my life up big time. I was not able to function very good.

I heard about RESTEX, a drug used in Europe for RLS. Is the drug coming to the U.S. too, and when how soon?

Mike S.

Medical Reply

Restex is the equivalent of Sinemet (both contain levodopa). However, both drugs work well initially but cause a high incidence of augmentation (which is why we do not recommend them). It is unlikely that Restex will come to the USA as there is no need for another levodopa containing drug as Sinemet works just as well.

You may want to consider alternate choices such as the anticonvulsants or painkillers.

Sent: Saturday, December 30, 2006 9:51 PM
Subject: RLS and sexual function?

I have had RLS for over 30 years now. When I discovered the problem they gave me Sinemet. It helped but the next day the withdrawal was terrible, for the last 10 yrs I have been using Mirapex .25 mg at 3 times a day. but now I am finding my sex is dysfunctional and cannot get it corrected. I looked up on Medline and one of the side effects of Mirapex is sexual problems.

I notice Requip does not have this problem, here according to Medline. I am a male at 74 years old. Every thing else checks ok according to my doctor. Would changing to Requip solve my problem, or are the side effects the same?

Peter B.
Kentucky

Medical Reply

Impotence is very uncommon with Mirapex (especially at the low doses used for RLS). In the Parkinson's disease patients (who use much higher doses) only 2 patients out of 388 had impotence compared with 1 out of 235 in the placebo group. Requip had 3 out of 157 patients with impotence compared to 1 out of 147 with placebo.

Of course, these are only from some of the available studies performed for the FDA and real life experience may be different. However, at age 70, impotence becomes quite common and is more likely due to your age rather than the drug.

Sent: Sunday, December 31, 2006 12:28 AM
Subject: RLS tickling and a theory

I have suffered from RLS which has gotten progressively worse over the last several years. It first manifested by making it difficult for me to sleep if I exercised after about 6pm. It has now grown to the point that it is a nightly occurrence.

My primary intent in writing is to point out what I feel is the likely cause of RLS. I believe that RLS is caused by the same mechanism which has been theorized to be responsible for tinnitus (ringing of the ears). The theory in tinnitus goes that the brain has an automatic gain control circuit. That circuit is amplifying the signal received in order to offset a perceived weakness in the signal coming from your ears. So in affect your brain is turning up the volume to the point that you start hearing a hiss much as you would when you turn volume up on an electronic amplifier and it is not connected to any input source.

It stands to reason that RLS is caused by the same thing. The incoming noise from nerves in your legs (or arms) feels like some strange non-specific sort of pain or sensation. Once you move, the RLS “noise signal” is overwhelmed by the actual signal (better signal to noise ratio) so the sensation lessens or goes away.

By having one’s feet tickled, at least until a tolerance is built up, the brain’s Automatic Gain Control circuit is adjusted beck down to the normal range…. At least for a while. I’ll bet we could figure out why the Parkinson’s disease drugs work for RLS by examining them in this context.

Michael A.

Medical Reply

Interesting idea for the cause of RLS. However, even this proposed theory for tinnitus is only that; a theory and therefore not proven (it may obviously be completely wrong for even tinnitus).

Many researchers and scientists are currently looking for the cause of RLS and of the many theories, yours has not surfaced yet. I am not saying that you are wrong (in fact, at this point in time your theory probably has as good a chance as many others out there to be the right one). Currently, we are still not that close to figuring out the origin and true causes of RLS.

Sent: Sunday, December 31, 2006 1:39 PM
Subject: Bad reaction to Requip?

I started Lyrica 50 mg on 11/30/06 and got some results almost immediately. On 12/16/06 I asked for and received a prescription for 100 mg to assure good results and some much needed sleep at night. On 12/27/06 during a visit with my respiratory specialist I asked for an and received Requip, for very bad RLS.

He provided me with a 2 week sample kit to get me started and to see if it actually would help me. I have noticed since starting the Requip that my left second toe has seemed to override the Lyrica and to burn and throb as before. Is it possibly a reaction caused by the Requip?

Don S.

Medical Reply

Although not very common, some RLS sufferers do notice a worsening in some (or all) aspects of their RLS symptoms when starting on a dopamine agonist. This situation does not seem to occur with other classes of RLS treatment (anticonvulsants like Lyrica or painkillers).

Sent: Monday, January 01, 2007 2:01 PM
Subject: Darvon for RLS-Pregnant?

I am a 38-year-old neurology patient under a good doctor's care for RLS for the last 10 years. After going through the anti-seizure regimen and developing a tolerance to all of them, my neurologist put me on Sinemet 25-250 three years ago. About 8 months ago, I visited him with news of a pregnancy. It was to be my fourth child. At 14 weeks, for some unknown reason, I had a missed abortion and lost the baby.

During the pregnancy, my doctor decided not to change my RLS regimen, and he kept me on the Sinemet, even though I was going through augmentation and taking up to 3 of the Sinemet per day, since pregnancy worsened my RLS symptoms. Could this regimen have caused the miscarriage? Despite my concerns about the Sinemet being a pregnancy C class drug, my doctor did not waiver.

After the miscarriage, I informed my neurologist that I again wanted to conceive. In light of this and my previous concerns, he switched me to Darvon N, 1 pill every 4 hours. While this has helped the RLS, it doesn't work nearly as well as the Sinemet did before augmentation, and a pharmacy friend recently told me Darvon itself was a pregnancy class C drug, and should never be used in the third trimester.

I'm so confused, and concerned for both the health of my baby and my sanity. I have a very understanding and supportive husband and family, and he wants only some sort of direction for us. While my neurologist said that narcotics would be the safest way to go for now (during pregnancy), why did he put me on a class C drug? I thought there were safer narcotics according to my research. I don't see him for another month, and I'm so concerned about the pills I'm taking, but my RLS is severe, and I have to be medicated to maintain my sanity and health. Any advice would be greatly appreciated!

Misty in Georgia

Medical Reply

Currently, the safest drugs for RLS in pregnancy are the two narcotics methadone (my choice) or oxycodone. Both are Category B drugs when used in low dose (which should take care of almost all RLS symptoms). Category C drugs should only be used when the B drugs above are not tolerated and treatment is absolutely necessary.

A Reply from Misty

Sent: Tuesday, January 09, 2007 12:09 PM
Subject: Pregnant with RLS

Thanks to your last response to me about my being on Darvon during this early pregnancy. I saw the heartbeat today, and am with a new OB who is eager to learn more about RLS. I spoke to him at length today, and he is considering discontinuing the Darvon in coming weeks.

I understand your suggestions to be Methadone and Oxycodone as the two safest in pregnancy. My questions is, with concern about weaning the baby off of the medications in the third trimester, how would we do this? Could we alternate the narcotic or slowly get off of it by using Sinemet or something else?

Misty

Medical Reply

The only concern with the very low doses of methadone used (compared to what heroin addicts take when using this medication) is that of fetal respiratory depression with the birth of your baby. This can be avoided by stopping the drug just before delivery is likely to occur. However, even this concern is not very significant as OB doctors commonly give Demerol injections (a fairly potent narcotic) to control the pain of labor without worrying too much about fetal respiratory depression.

I would not add Sinemet during pregnancy although Permax (pergolide) is Category B for pregnancy (but does have the risk of heart valve damage when used for the long term).

A Reply from Misty

Sent: Thursday, January 11, 2007 4:33 PM
Subject: Re: Pregnant with RLS

Understand your suggestions for methadone or oxycodone. The dosages that you prescribe for your pregnant RLS patients, are they "as needed" or "X amount" of a dosage per day? How much of it do you prescribe? I would like to take this information to my neurologist. I would imagine that these meds would need to be very closely monitored because of having to take them over a long period of time in order to guard against addiction (physical or psychological).

Do you suggest spouses use guardian dispensing for your pregnancy patients? Aren't these drugs highly addictive, not only for the mother but also the baby? The reason I ask is that I am on a regular dosing schedule with Darvon, it is not just for nighttime. We have found that "staying ahead" of my RLS symptoms (which are now in my arms also, and occur during the day), I am much better off, symptomatically speaking. But my concern is for the baby. Is there a middle ground for us during the coming six to seven months?

Medical Reply

You can use the narcotics on an as needed basis but then you may have to take larger doses (smaller doses taken before symptoms occur work better and allow lower doses). You can experiment to find the lowest dose that resolves your RLS symptoms and take that dose regularly.

At the doses used, there is virtually no risk of addiction so no further precautions are necessary (other than your doctor making sure that you do not get more narcotics before you are due). The only middle ground is taking less medication and suffering more. That decision is up to you and your doctor to decide.

Sent: Monday, January 01, 2007 9:07 PM
Subject: Need to increase Mirapex for RLS?

I have had RLS for as long as I can remember and my doctor has me on Mirapex .5 mg which helps. I do not describe my condition as tingling or burning, mine feels more like being claustrophobic in my legs. I have these feelings everyday, if when I feel them coming on and take the medicine in time it is not so bad, but if I wait to long then I can not set, lay down, or even stand, I have to pace until the feeling goes away with medication.

It seems as I get older the RLS gets worse and the medication dose not work as well as it used to. I guess what I want to know is do I need to ask my doctor to increase the dosage and will it have to be increased from time to time for the rest of my life?

Denise

Medical Reply

It is likely that RLS will get worse for most with time. If you take your medication 1-2 hours before symptoms typically occur (on a regular basis), you may be able to get by with less medication.

If you keep increasing the Mirapex there is a concern that augmentation will occur (if it is not already occurring).

Sent: Monday, January 01, 2007 9:16 PM
Subject: RLS and Parkinson Disease (PD)?

I too have RLS in my legs and arms. I discovered this when I started having tremors from PD. I was placed on Klonopin for panic attacks and then Requip for RLS. this helps a lot. If I am off of these for a few days I go back to the same restless feelings. I got to where I could not drive or stay still on the witness stand without the med. but I fall asleep within seconds of being still, driving or riding. I often would be awakened by tooting horns of other drivers. Therefore, I was "retired" for my own sake and the people I drive around.

Now my problem is the pain in my legs. from my hip to my calf on left side. I was taking Advil until once it seem to turn off my medication for my PD. I was told after that to not take ibuprofen. but it is the only thing I can get to help with the pain. any one have any ideas. My empathy goes out to each of you. may God bless and send you mercy.

Sylvia

Medical Reply

You may have a neuropathy pain in your leg. This could be due to a disc problem or a hip problem. Your doctor should evaluate this issue as it may be treatable.

Also, make sure that the Requip is not the cause of your increased daytime sleepiness.

Sent: Tuesday, January 02, 2007 12:37 PM
Subject: RLS not doing well with Requip?

I am trying to live with RLS, along with Crohn's Disease, Thyroid Disease, Rheumatoid Arthritis and Diabetes. I have to say the RLS symptoms affect my life the most.

I work part-time in the morning and need a short nap in the afternoon to get me through the day but because my RLS symptoms start by noon each and every day it's impossible to nap. I currently take 1.5 mg of Requip at 8 p.m. but I suffer severe leg jerking and knee, shin and calf pain from about 5 p.m. on. I fall to sleep about 3 hours after taking the medication but I don't stay asleep long.

I can't increase the Requip or I get bad headaches and an upset stomach. Do you think I should try Mirapex? Is it the same class of drug as Requip or does it work differently? How long after you take it does it begin to work?

Medical Reply

You can decrease the upset stomach by taking the Requip with food (although, that may not help your headache problem). Since you start getting your RLS symptoms at noon, you should probably talk to your doctor about taking an additional dose of medication at 11 am. If the Requip is still causing side effects, a change to Mirapex (same class of drug that works on the same dopamine receptors) might be helpful.

Mirapex is about 2-4 times more potent than Requip (on a mg basis) so once you reach the correct dose (which should be about .375 to .75 mg or less) your RLS symptoms should be resolved.

You may also benefit from a sleeping pill such as Ambien or Lunesta.

Sent: Tuesday, January 02, 2007 5:47 PM
Subject: Mirapex & Arthritis?

I am a 67 yr. old fairly active woman with RLS & PLMD for many years. I was on Mirapex for about 2 years. During this time symptoms of arthritis in my knees, thumbs, and back have increased dramatically. Have you found any link between Mirapex & Arthritis?

In the online literature I found one medical site that said arthritis was a rare side effect but my doctor had never heard of this. I'm currently trying Requip but am not finding it as satisfactory as the Mirapex.

Medical Reply

An increase in arthritis with Mirapex is quite unusual (but has been documented). The best way to check this out would be to stop the Mirapex (as you have done) and see if the arthritis goes away. If the arthritis has persists off the drug then it is most likely not from the Mirapex. Also, you may not be doing as well with Requip as you may need 2-4 times the dose with Requip to equal the effect of Mirapex.

Sent: Friday, January 05, 2007 11:56 AM
Subject: RLS all my life.

For as long as I can remember I have had RLS. I am now 55 yrs old and I have only known about this condition for about 10 years when a nurse friend told me about it. I have suffered considerably for years. For the last few years I have been taking two .05 Pergolide (generic for Permax) @ lunch and another 2 of the same at dinner. In spite of the medication I still have trouble sleeping. I can go a few weeks and be fine and then no sleep at all.

Should I change meds for a better solution?

My second question is about the effects of the full moon on this condition. Many months ago I started writing down when my sleep was bad and it is always bad on the night of the full moon. Now, it is also bad at other times but the full moon condition seems to be constant. Is there a link to the full moon?

Is there any value in trying to determine similar conditions to sleep patterns, good or bad?

Ingrid from New Jersey

Medical Reply

There is no general effect of the lunar cycle and RLS although many women do notice the effect of their menstrual cycle on RLS (however, I am assuming that your are already past that stage). There may be something peculiar with your body chemistry or hormones that could be creating this lunar cycle effect.

Permax is a reasonable medication for RLS. However, there is a low incidence of a serious side effect (scarring damage to heart valves) that can occur. Therefore, if you stay on the drug, you should have a heart ultrasound once a year or better yet, change to the newer (and safer) dopamine drugs, Mirapex or Requip. You should be able to prevent almost all your RLS symptoms with the proper dose.

Sent: Friday, January 05, 2007 8:05 PM
Subject: The green chair for RLS?

To reply to Candy's question......" if it is the chair or the machine", I'm sure she was pulling your leg ! ! ! From all the responses in the Patient's Letter on your site, Requip and Mirapex, both don't seem to be the answer to RLS.

By the way, not that I have the cure for anyone else, but I do have the cure for me........I have been on Imipramine for frequency of the bladder caused by Mirapex. Guess what? It has been three months now that I have no restless legs. I wrote to you before and you cannot give me the answer as to why this is working for me.

My answer is that imipramine is a drug that works for depression, which I do not have, and doctors use it for other reasons such as the bladder. I feel this affected a chemical reaction in the brain and therefore, no more restless legs, My brain got the message.

Margaret

Medical Reply

Candy may or may not have been serious but according to the GSK company executives (the makers of Requip), they get hundreds of requests to buy the "green chair" from patients who believe that it may be part of the solution.

Although it may seem from the many letter complaining about the problems with Requip and Mirapex that they are not really the answer for RLS, it should be remembered that a lot of the motivation for people to write in to my website is when medication does not work. Therefore, we get a disproportionate amount of patients writing in who have had problems with these medications. In real life, the vast majority of RLS sufferers (over 90%) do great with these drugs and are not heard from on the RLS internet forums.

It is quite curious that Imipramine helped your RLS as it is generally one of the drugs that worsens RLS. Almost all the antidepressants tend to worsen RLS (except Wellbutrin and trazodone) so your case just exemplifies the diversity of response to medication that is present amongst RLS patients. That is why doctors who treat RLS should be very flexible when choosing medications for any individual RLS sufferer.

Sent: Saturday, January 06, 2007 9:19 AM
Subject: RLS and Mirapex and Lunesta and pulmonary fibrosis?

My mother has been diagnosed with pulmonary fibrosis about 1 1/2 years ago and just recently had a sleep study which showed she now has RLS. The MD started her on Mirapex and also on Lunesta. Since starting on both of these drugs, she seems to be experiencing and increase in her pulmonary fibrosis symptoms such as an increase in shortness of breath, more fatigue, etc. and I've noticed a mood change.

She also has been taking Lexapro for her chronic depression for about 4 months. Any ideas which of these medications is not serving her well with her pulmonary fibrosis. Should she be using something else?

Glynis

Medical Reply

None of her drugs have been associated with pulmonary fibrosis.

Sleep studies cannot diagnose RLS. They can pick up PLMS (leg jerks) that are often associated with RLS, but these PLMS are not diagnostic of RLS as they occur in other conditions or by themselves (or with people on SSRI drugs such as your mother's Lexapro). Most doctors do not treat the PLMS.

The only reason to treat your mother with Mirapex is if she is having RLS symptoms while awake (the sleep study can not ascertain this issue). If she does not have awake RLS symptoms, then the Mirapex should most likely be discontinued.

Sent: Saturday, January 06, 2007 6:18 PM
Subject: Dependent on Requip?

I have been on Requip for about a year. It does work but I have noticed that before taking Requip I would only have RLS a day or 2 a week but now if I don't have that pill in my body by 8:00 pm I will get it every night and it is now in my arms as well.

I have tried to wean myself of Requip but I can't stand it. Is there any other remedies I can try?

Ryan H. L.

Medical Reply

The Requip may likely be causing augmentation (worsening) of your RLS. You should stop the medication and use a painkiller (such as Vicodin or Ultram) instead. This should present little difficulty, especially as the RLS should return to only 1-2 days per week.

A Reply from Ryan

Sent: Saturday, January 06, 2007 7:01 PM
Subject: Re: Dependent on Requip?

Thanks for the quick reply. Have you heard anything about Requip and weight gain. I gained about 45 lbs in 6 months, there has been other stressful things going on in my life but I am trying to find a cause for such a rapid weight gain.

Thanks again for any information you can provide.

Ryan L. H.

Medical Reply

We have heard a few rare reports of Requip causing weight gain. It is certainly possible but I would first look at the stress as being the more likely culprit of this new problem.

Sent: Saturday, January 06, 2007 9:13 PM
Subject: Take temazepam (Restoril) with Requip?

Can I take temazepam and Requip together at night? I have always had insomnia and had trouble falling and staying asleep. Temazepam had just recently been prescribed in place of Ambien. I was just yesterday diagnosed with RLS.

Amy

Medical Reply

Temazepam can be taken with Requip. However, if taken every day, there is a mild concern about tolerance and dependence occurring. Ambien and Lunesta are safer drugs if taken daily for long periods of time.

Sent: Sunday, January 07, 2007 3:37 PM
Subject: Drug holiday from methadone?

I take Ultram for 3 weeks and then take a 12 day drug holiday using vicodin. I have had some augmentation problems with Ultram, that's why the 12 days off Ultram. My question is; I have 24/7 RLS.

If I used methadone day and night for 12 days every 3 weeks, would that long of a time present any addiction potential?

Mary P.

Medical Reply

Augmentation normally only occurs with the dopamine agonists however there have been several cases (one recently reported in SLEEP MEDICINE Journal by Dr. Allen) of this problem occurring with Ultram.

My suggestion would be to change to methadone at low dose (5 mg up to three times per day) instead of both Ultram and Vicodin (which contains acetaminophen or Tylenol which does not help RLS and can only cause side effects). At low doses (up to 30 mg per day), tolerance or dependence on methadone should almost never occur. The exception would be for people who have a history of drug abuse and may go on to get into trouble with any narcotic.

Sent: Monday, January 08, 2007 9:50 AM
Subject: Zoloft and Requip together?

My husband has been on Zoloft for many years and is now taking requip for RLS. It seems to me it had effected the Zoloft. Can you tell me if there are effects of taking both drugs.

Sherri G.

Medical Reply

There is no known interaction between the two drugs. Many RLS patients do take these drugs together. The only concern is that Zoloft (like most of the other antidepressant medications) tends to worsen RLS.

Sent: Monday, January 08, 2007 10:45 AM
Subject: Heart valve damage with dopamine drugs?

After the study this week that was published in the New England Journal of Medicine regarding the high risk of heart valve problems, is Requip in doses of 3 .025 mg still a safe drug to take for RLS?

Penni M.

Medical Reply

The NEJM article described that heart valve damage that occurs with ergot-derived dopamine agonists which include pergolide (Permax), cabergoline (Dostinex) and bromocriptine (Parlodel). This problem does not apply to the non-ergot derived dopamine agonists, Requip and Mirapex.

Therefore, you should have no concern with taking Requip (or Mirapex) for your RLS as far as heart valve damage.

Sent: Tuesday, January 09, 2007 7:52 AM
Subject: Mirapex, Lexapro?

I am 39 years old and I’m greatly concerned about the meds I am on. About 4 years ago I started Ranitidine for severe acid reflux that runs in my family. About 3 years ago I started slowly having RLS issues about once a month. No medications taken for that I just dealt with it. A year ago I was put on Lexapro for depression and anxiety.

I have since found that the Lexapro works wonders for me and I feel normal for the first time in my whole life. I am able to handle issues responsible and affectively without anxiety. I have recently started taking it every other day. Of course, the Lexapro increased the RLS with a vengeance. Now I have it 2-3 times a week and my upper legs ache after a bad night. Not to mention, it caused havoc with my sleep.

So, neurologists put me on 1.0 mg at 5 pm each day of Mirapex and I’m not having RLS issues anymore. I’ve only been on it about 3 weeks now. At the neurologists office I also had blood work done and they found that my B12 level is 280 but should be between 200-1100 so this score is considered low. All together, I’m on Ranitidine 300 mg twice a day, women’s vitamin, calcium, B12 1000 mcg twice a day, Mirapex 1.0 mg once a day, birth control pills, and Lexapro 1.0 mg recently changed to every other day. That is 9 pills a day and I am absolutely embarrassed.

In affect the ranitidine caused the B12 deficiency, the Lexapro caused the RLS to get worse which put me on Mirapex. I hate this. I’m concerned about being on these medications and long term damage to my body. I also found in my research that a low B12 level can cause “shaky limbs”. So I’m getting my B12 right. Then, I’m coming off the Mirapex to see if the RLS got better. I’m off the birth control pills in a another month.

What affects do these specific drug combination have long term? Also, do Parkinson's disease patients display RLS symptoms before developing Parkinson’s? I’m paranoid I will get Parkinson’s. I will say that the only issue I have right now from the meds is at times a since of confusion like my brain made a decision but my tongue is not cooperating with getting the words out of my mouth. The other day I couldn't say specific and I normally can.

I also feel on the inside like a need to release a very good cry but nothing happens on the outside because I'm a bit numb. Before the Lexapro I ran my mouth constantly and now I observe people more and make a decision before I open my mouth. The confusion came in when I added Mirapex 3 weeks ago.

Wendy

Medical Reply

You do not have to worry about getting Parkinson's disease as there is absolutely no progression from RLS to Parkinson's disease.

Your plan about increasing your B12 may be helpful, but it is quite doubtful that it will have any impact on your RLS.

The problem is that you seem to need the Lexapro which worsens your RLS and thus requires you to take Mirapex. One possible solution would be to change the Lexapro to Wellbutrin (one of the few RLS friendly antidepressant drugs). If the Wellbutrin helps your anxiety and depression problems, then you would likely not have to take Mirapex or any other medication for your RLS.

If however, the Lexapro is necessary (as the Wellbutrin does not help you), then perhaps a change to Requip (and try to keep the dose as low as possible) may work better.

Sent: Tuesday, January 09, 2007 8:12 PM
Subject: St. John's Wort and narcotics?

Hello, I've had RLS all my life with aching pain in my legs as well as the creepy-crawly feelings in my legs and arms. I'm 49 years old, so I've had this for a long time. Up until about a year ago I was taking diazepam for chronic vertigo associated with inner ear damage. The diazepam seemed to keep the RLS symptoms in check. When I discontinued the diazepam a little over a year ago, I quit cold turkey, with no difficulty whatsoever. But the RLS and insomnia came back. I started on Requip about 2 months ago, and the side effects were bad - shivering and chills, nausea, nasal stuffiness, and night "munchies." But I figured I would stick it out if it would help with the RLS. About 2 weeks ago I started to get dramatic worsening of the symptoms, with horrendous leg pain and all day "squirmies." I discontinued the drug a week ago, and the pain and sensations have been terrible.

I got an appointment to see my primary care doctor last week, and told her about the pain I was in. I also told her that I was taking St. John's Wort for my depression, and had weaned myself off the Lexapro I had previously been taking because I understand that it worsens RLS symptoms.

This is my question: I asked her for something for the pain. She said that she couldn't give me anything because all the potent pain meds interact with St. John's Wort. I have asked several pharmacists about this and they have told me that there are no known dangerous interactions between narcotics and SJW. I have looked on the web and the interactions are being studied, but the only thing they have found is that SJW may blunt the effect of the narcotic, so that if SJW is discontinued, the narcotic will suddenly become more potent. Have you heard of any such interactions? Or is my internist being overly concerned about the controlled substance thing? (She had issues with my being on diazepam for the vertigo. I never abused the diazepam, and quit taking it without any adverse effects, other than the RLS returning.)

I got very desperate with the pain and sensations, and took a 5mg hydrocodone that my husband had. It relieved both the pain and the sensations and let me get some sleep. I had no adverse effects. I saw my sleep clinician and she prescribed me my own Vicodin. Honestly, without the narcotics, I would have had to go the ER, the pain and sensations have been so extreme. But with 1/2 to 1 - 5mg. Vicodin, I can sleep the night. I still have pain and sensations during the day, but they are manageable, and are lessening dramatically already.

Thank you for this site and all the valuable information you provide.

Susan

Medical Reply

I do not know of any worrisome interactions between St. John's Wort and narcotics. However, these interactions are not well described or known in general as St. John's Wort is not a prescription drug (the interactions between prescription drugs are much better studied, documented and easier to look up - they computer programs to check on these).

My advice would be to speak to your doctor again about taking a narcotic on a daily basis at a low dose. This presents virtually no risk of addiction (unless you have a history of addiction which is clearly not the case). An alternative to investigate and discuss with your doctor is Ultram. It is not really a narcotic, works (in many RLS sufferers) as well as Vicodin and may be much better accepted by your doctor.

If you need a sleep aid, the non-benzodiazepines (Lunesta or Ambien) are better choices.

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