Patient letters on RLS symptoms and remedies- Page 72

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Sent: Friday, January 12, 2007 6:08 AM
Subject: DASH diet and RLS

I started the DASH diet recently for my mild hypertension. If you're not familiar with this, it's a regime developed to control that disorder and involves cutting back on salt and fats. The bottom line is that my RLS has virtually disappeared. It had ranged from mildly annoying to keeping me from sleeping and I was on the point of seeing my doctor for a medication.

Needless to say, it's nice to be killing two birds with one stone here, and I thought I would share this with anybody else who might like to see if that sort of eating program would help. I'm not sure whether it's the salt or the fat that does the job. While it sometimes returns, it's VERY mild and I can settle it down with a sit in the hot-tub for a few minutes. I think that sometimes I might have exceeded my salt allowance that particular day.

There is a DASH website and a couple of books available. I am not surprised that it hasn't "caught on" with the dieters of the world, since it can be "tweaked" for weight loss as well (which is also being helpful to me). But, since there are no merchandising tie-ins, I guess that's NOT surprising. Also, it requires some self- discipline, which most "dieters" are unwilling to get into. ( And THAT is the unpleasant truth!)

Anyway, it's worth a shot.
Nancy L.K., Alabama

Medical Reply

Diet does seem to affect a significant percentage of RLS sufferers. Although some items (ice cream, carbohydrates, etc.) seem to more common, other changes are at times beneficial to some individuals. It can be very difficult to make sense of the varied responses to different diets.

I have not yet heard of any other RLS sufferers benefiting from the DASH diet. However, we will see if after posting your letter if others respond to this non-drug approach.

Sent: Saturday, January 13, 2007 8:44 AM
Subject: Angiogram causing RLS?

I do not have a family history of RLS at all. I never had this until after I had to have an angiogram (the one with the catheter in the groin to check the heart and they also let the dye go to the brain. ?They were checking the blood flow of the carotid and heart as I had a severe neck injury (whiplash] from an auto accident. I was 26 years of age. The carotid on the left side would just pound all the time. Turned out to be a severe muscle and possibly with permanent damage.

It was after this test, which I hope I will never have to have again, that it started. I have been bothered ever since. I am 58 years old now. I have been on Sinemet, Mirapex, and Sedatives worsen the condition. I have a multitude of skeletal issues, but healthy otherwise; meaning: no heart issues, weight problems, lung, etc.

The skeletal issues are spinal from injury in auto accidents which I have been privy to via being a passenger in each episode of which there have been three at ages 19,24,and 29. Could the fact that the spine has been affected from these traumas i.e.: disc herniation in 8 places at the age of 24 be responsible for the RLS ? I have also heard of iron therapy helping if your intake is low. Is that correct?

As long as I keep moving it does not happen. Shortly after sitting or laying it appears. I love to read and unfortunately I cannot do this as I am constantly changing positions and it is just too distracting to concentrate. It is completely involuntary. If I get up and walk around and they sit back down or lie down it is right back. The episode last anywhere from 30 minutes to three hours, sometime more.

I am on Ultram for my skeletal issues which also include four knee surgeries with the promise of replacement. I am allergic to all NSAIDS and do not want to take a narcotic if at all possible. This is as close as I would like. I do have a supply of some for when my "normal" pain gets out of hand. I am also getting injections at this time to see if I can put off yet another spinal surgery.
After reading all of this what is your opinion of treatment for this RLS?

Lyn

Medical Reply

There are no reports in the literature of angiograms worsening or triggering RLS. Many have reported that trauma (especially spinal) worsened or triggered their RLS but this has never been examined scientifically. It may be coincidence or real. Only further study or time will tell.

Ultram often helps RLS so you may be getting some relief with this drug. As you do not want to use narcotics (which would be my next choice for treating your RLS), the anticonvulsants (Neurontin and especially Lyrica) may be more appropriate.

Iron therapy may help those RLS sufferers who have documented low iron levels (serum ferritin less than 45).

Sent: Saturday, January 13, 2007 11:02 AM
Subject: PLMS, Pilots and Quinine Sulfate

I'm an airline pilot and had PLMS diagnosed back in 2000 through a polysomnogram, and I was given Mirapex, 0.25 mg at bedtime. This was in consultation with the sleep specialist, and my AME (Flight Surgeon). In the world of commercial airline pilots, ALL medications have to be approved in advance by the FAA. I received approval from the FAA Aeromedical Division to use Mirapex.

Long story short, after taking Mirapex with excellent results for 3 years, in 2003 I received a letter from the FAA stating that my FAA medical certificate had been revoked (and I was grounded!!) - unknown to me (and my AME), the FAA had recently disapproved the use of both Mirapex and Requip for pilots.

During the course of applying to get my pilot medical certificate back (after discontinuing the use of Mirapex for 30 days), I began taking a magnesium supplement (500 mg) and eating 1/2 a banana daily. A subsequent polysomnogram showed that the PLMS was not disturbing my sleep. I was back flying within 60 days.

I have heard of other pilots, after being denied the use of Mirapex and/or Requip, using prescription Quinine for nocturnal leg cramps. The FAA has had no objection to the use of Quinine Sulfate.

I learned today that on 12 December 2006, the FDA banned the sale of Quinine Sulfate drugs that are used to control RLS or nocturnal leg cramps.

Is there anything that you are aware of that is non-prescription that could be used? Although the Mg and Banana trick works for me, I know of other pilots who are currently using prescription Quinine, but obviously, that will no longer be available for them.

Any info (for educational and informational purposes only) that you could offer would be greatly appreciated.

Captain D.

Medical Reply

It is not surprising that the FAA has banned the use of Mirapex and Requip as they have been associated with "sudden onset of sleep attacks". Although this typically occurs at the higher doses used for Parkinson's disease, it may occur (infrequently) in RLS patients. Only a rare person would suffer a daytime sleep attack on the .25 mg taken at bedtime. However, the FAA must be overcautious and thus ban drugs with even a minimal risk of possible sleepiness as a side effect.

Quinine has absolutely no role for treating RLS. I am not sure why the FAA has banned this drug. It is an excellent choice to treat leg cramps (which are often confused with RLS but have nothing to do with RLS).

There are no over the counter (non-prescription) treatments that help more than a few given (lucky?) individuals with RLS.

Sent: Sunday, January 14, 2007 3:26 PM
Subject: Hip replacement surgery and RLS?

I am scheduled to have total hip replacement next week, but have discovered that the surgery will likely require a 2 unit transfusion of blood. It seems there are risks with donated blood, but I have heard that people with RLS should not donate blood lest symptoms worsen.

My current regimen is .25 mg of Mirapex and Darvocet-N 100 at 4:30 pm; .125-.250 mg. Mirapex, Darvocet-N 100 at 8:30 pm; 10 mg. Ambien at bedtime. It works pretty well. (I have just begun the Darvocet-N but when I took it with no Mirapex or Ambien it was a l-o-o-ng night. My side effect from Mirapex is insomnia.)

My doctor is currently monitoring homocysteine levels (now at 8 down from 11 two years ago); serum ferritin was 39 in July, 2007. I have never been able to achieve much more of a higher level with iron supplements.

Questions:

1. Should I postpone surgery to I arrange for Autologous Donation?
2. If so what would be the best schedule for blood donation, and how could I minimize RLS worsening?
3. How will RLS be affected by hip surgery?

L.S.

Medical Reply

1. Arranging for an autologous donation (donating your own blood before surgery to be used during surgery) is likely to worsen RLS as you are losing iron with your own donated blood. Getting someone else's blood (normal route for blood transfusions) should be helpful as you will also be getting additional iron.

2. The schedules for donating your own blood are fairly rigid and fixed (due to time constraints of how long your donated blood lasts and the time it takes to build up more blood after donating). This may not be the best approach anyway, as noted above.

3. Any trauma to the body (such as surgery) may potentially worsen RLS but this is not well understood or studied. Just add this as one of the many risks of surgery (such as the very small risk of anesthesia) and if the surgery is necessary, just go ahead and do it. You should let your doctors know about the precautions necessary for RLS patients undergoing surgery.

Sent: Monday, January 15, 2007 8:19 AM
Subject: Switching from Mirapex to Requip


My dad is 78 and have been on Mirapex for about 10 years. The side effect he has is sleepiness. He falls asleep as soon as it starts to work. He has to take his Mirapex at about 5 or 6 P.M. Then he is asleep all evening, waking at midnight or shortly after. He then is awake all night.

He has tried switching to Requip, but was like an alcoholic going through withdrawal. Is there a way to switch over? I don't think his family doctor Is familiar with this. Please help. My dad is the end of his rope!!!

Janice D.
Newfoundland, Canada

Medical Reply

Switching over from Mirapex can be easy for some and difficult for others. Generally, one can switch immediately by replacing Mirapex with 2-4 times the dose (in mg) of Requip. Therefore, if you father was on .25 mg of Mirapex, he would need .5 to 1 mg of Requip (it is usually better to start with the lower dose).

If this does not work, then changing to a narcotic (such a Vicodin) or Ultram taken one hour before symptoms usually begin should do the trick and be very safe. He should also be much more awake on this therapy.

Sent: Monday, January 15, 2007 2:12 PM
Subject: Weaning off Requip

I have been on Requip for a couple of years now. My Dr. had me increase the dose to 7mg a day. Not all at the same time. The augmentation was getting worse. He just started me on 0.25mg of Mirapex to take with 3mg of the Requip at bedtime. It is working. So now I need to get weaned off the Requip and gradually increase the Mirapex. How should this be done?

Just in case this will help. My other medications are as follows. Vicodin 750ES x 4 per day,. Beta Blocker 5mg, Diovan 160mg, Enablex 7.5mg x 2 per day, Lovastatin 40mg, 81mg aspirin.

Thank you very much. Your website is a wonderful help.

Sandie A.

Medical Reply

Your dose of Requip is quite high. It is very unusual for patients to take over 4-6 mg of Requip per day. Most experts feel that the higher the dose, the more likely that augmentation will occur (as in your case). Adding Mirapex to Requip just increases the amount of dopamine drug that may be causing the dopamine receptors to malfunction and result in augmentation (although there may be a short period of time that the increase in dopamine drug helps the RLS before increased augmentation occurs).

If the Requip is to be replaced by Mirapex, it should be done at once. Normally, the dose of Mirapex needed to replace Requip is 1/4 to 1/2 the dose of Mirapex (it is best to first use the lowest dose of Mirapex that resolves the symptoms). However, most RLS specialists would withdraw all dopamine drugs for 3-4 weeks before restarting another dopamine drug. You would be a difficult case to do this as the RLS usually worsens markedly upon withdrawal of dopamine drugs (once augmentation has occurred). We usually use narcotics to get the patient over this difficult time, but you are already using high doses of a narcotic (Vicodin ES) which should have been controlling your RLS symptoms.

You may want to consider adding an anticonvulsant medication (such as Neurontin or Lyrica). They may be beneficial and allow you to decrease the amount of your dopamine drugs.

Sent: Wednesday, January 17, 2007 12:08 PM
Subject: RLS augmentation with Ultram?

I know that you spend a great deal of time caring for those of us around the country who struggle with RLS and are not fortunate enough to have informed doctors to work with us and I am so grateful. I find myself in a very difficult position and would greatly appreciate any guidance you are willing to offer. About 8 or 10 months ago, I augmented on Requip, came off of it, was put on Mirapex and augmented on that as well. I was finally able to find relief from RLS and PLMD with a combination of 1200 mg Neurontin and 200 mg Ultram daily. I still had occasional breakthrough, but it was tolerable.

Over these months, I have taken myself off of the Ultram and the Neurontin to see if one would control both issues, but Ultram seems required to deal with the RLS and Neurontin seems required to deal with the PLMD. Over the past several weeks, I have noticed that my RLS symptoms seem to be returning with a vengeance. They have gotten all but unbearable in the last week. It feels exactly like I felt when I augmented from the Requip. My symptoms have gone to virtually 24/7 and they are much more severe.

My problem is that my doctor has refused to work with me any further on my RLS issues. She says that I am too young (28) and my RLS is too severe. As the next step would be to consider a narcotic or a significant dose of a benzodiazepine and I would probably be on it for the rest of my life, she fears she is setting me up for long-term addiction issues, even though I do not presently seem to be a “seeker.”

So, I do not know what to do at this point. I feel like I might go completely crazy if I don’t get some help, though. I will admit that I tried to increase my dose of Ultram on my own and that did not help at all. I have an appointment with an acupuncturist on Saturday and am hopeful that I might find some help from that direction.

Any guidance or suggestion that you might offer would be greatly appreciated,
Brandy A.

Medical Reply

Until recently, it was thought that only the dopamine agonists (Mirapex and Requip) could cause augmentation. However, RLS specialists have seen cases of augmentation with Ultram and just recently, Dr. Richard Allen wrote up one of these cases in the journal, SLEEP MEDICINE. Thus, it is quite likely that the Ultram is causing augmentation of your RLS and you should go off the drug.

My suggestion is to follow your doctor's advice and start on a low dose of a narcotic. When taken at the doses needed to treat RLS (especially in a patient who has no history of drug abuse), the risks of addiction (even when taken daily) are virtually negligible. Although we all have heard of many people (especially public figures) getting addicted to narcotics taken for pain, this only happens when they exceed the recommended doses and are not monitored correctly (patients often get prescriptions from more than one doctor or illegally to bypass this supervision). If you take daily doses of a narcotic carefully, you should almost no concern about tolerance, dependence or addiction.

Sent: Thursday, January 18, 2007 4:48 PM
Subject: Treatment of RLS?

The treatment plan my doctor has me on for RLS : Lyrica 50 mg, two at bedtime, Lexapro 10 mg, iron supplement, hydrocodone two tablets at 6 PM. I am doing well with this regiment as of now but have a concern with taking the hydrocodone daily.

Some times I have to take more if traveling or sitting long periods of time. He doesn't think this is a problem since I only take what I need. Is this your view also? I value your opinion . I have learn much from your website of this terrible malady so many of us suffer. I have had the Ultram in the past but didn't work as well.

If I cut back on the Hydrocodone and added Ultram , is it ok to take both drugs together?

T.W., OK

Medical Reply

Taking hydrocodone (I assume that you are using the 5/500 mg dose) at 2 per day should present no problem with tolerance, dependence or addiction (unless you have a history of drug abuse). This dose is significantly below the threshold at which these issues become a concern. Since the Ultram did not work as well, I can see no reason to add it to cut back on the hydrocodone. Generally we do not take these drugs together unless there is some advantage (such as one makes you sleepy or causes insomnia).

The Lexapro may worsen RLS while Wellbutrin (if it works for you) may be a better choice as it does not affect RLS . If you are taking iron supplements, please be sure to have your doctor check your iron and ferritin level to prevent iron overload from occurring.

Sent: Thursday, January 18, 2007 6:29 PM
Subject: RLS and Temazepam?

I have had RLS for years now and have been on a combination of Requip and temazepam to help with the symptoms and the accompanying Insomnia. For the last couple of months I noticed the temazepam has given me “rebound” effects, and so therefore I was still having the insomnia. I thought maybe I should wean myself off the temazepam with my doctor’s approval since it wasn’t helping the insomnia anymore.

So about a week ago I started tapering off the temazepam and was doing better sleep-wise, but about 3 or 4 days ago I noticed that the RLS was getting worse at night since I started the tapering process, and in order to stop the twitching I had to start increasing the Requip dose which I also did not want to do. What now?

I am very frustrated. I hope you can help me?

Jill,
Albuquerque, NM

Medical Reply

Temazepam (Restoril) and other benzodiazepines generally do not treat RLS but rather help patients with RLS symptoms fall asleep (just as they would help someone with back pain fall asleep). Thus, it is curious that your RLS got worse off the temazepam.

Whatever the reason for your RLS worsening, for now, increasing the Requip (as long as your dose is not too high already) is very reasonable. You could add an anticonvulsant or painkiller if you really do not want to increase the Requip.

A Reply from Jill

Sent: Thursday, January 18, 2007 8:42 PM
Subject: RE: RLS and Temazepam

Yes, the RLS was one of the main reasons my doctor prescribed temazepam to help me fall asleep, but I noticed my sleep was beginning to get restless. I was on 30 mgs temazepam and I have been reducing the dosage by about 10% per week. I am currently on 2 mgs of Requip and over the last 3 nights have had to up the dose to about 3mgs in order to stop the RLS symptoms and get to sleep. I have heard that a deficiency in iron can contribute to RLS, and I do tend to have a deficiency. Do you think that might help? I started taking a multi with iron in today.

Jill,
Albuquerque, NM

Medical Reply

Requip at 2 mg is bordering on a high dose (95% of RLS patients need 2 mg or less per day). You might want to seriously consider adding an anticonvulsant (Neurontin, Lyrica, etc.) or painkiller (narcotic or Ultram). Another choice would be a non-benzodiazepine sleeping pill like Ambien or Lunesta.

Iron is only helpful for people who have serum ferritin levels less than 45 (this is easily checked with a blood test). The amount of iron in a multi-vitamin is really too low to raise serum iron levels. However, if you do take higher doses of oral iron, you should have your doctor monitor your serum ferritin/iron levels to assure that you do not cause iron overload.

Sent: Friday, January 19, 2007 3:36 PM
Subject: PLMD Drug Treatment Trial Results

I just finished a short trial of a few sleep medications.

I decided to lower my dose of Neurontin slightly and continue to take it along with the drugs listed below. I lowered the Neurontin slightly to reduce or eliminate the apparent somnolence side effect. Although it is not a perfect way to "control" Neurontin's direct and side effects, I felt it was better to maintain some level of Neurontin so the effects of the new drugs would (hopefully) not be too influenced or overshadowed by having zero Neurontin in my system. I am not sure, but the Neurontin may be helping to directly control the PLM's.

Here are the results:

Ambien CR at 12.5 mg: Seemed to help overall. May have some hangover. The controlled release (CR) may be slipping into the next day or the dose is too high. Standard Ambien may be a better choice.

Lunesta at 3 mg: Seemed to help more than Ambien CR but there appeared to be a daytime drug hangover. I also tried cutting a 3 mg tablet in half. It was a mess. I gathered the "halves" and particle remains for a estimated 1.5 mg. It worked pretty well. I think a 2 mg dose may be more appropriate.

Temazepam (generic) @ 15 mg: This drug had the best results of all the drugs in the trial. I felt very good all day with little hangover. Unfortunately, its a benzodiazepine with tolerance/dependency issues. As you might expect, I have a bias against the benzodiazepine class of sleep aids.

Although Ambien CR and Lunesta are helpful, they are expensive. I would like to try the non-benzodiazepine, Imovane/zopiclone. I have found a few sources in Canada via the web at about $50 plus S&H for 100 of the 7.5 mg generic tablets. Comment: I think its a disgrace that although zopiclone is readily and cheaply available around the world, it is not available in the US.

With my GP doctor's blessing, I feel a good plan would be to take temazepam for 2 weeks, then take a 2-3 day holiday with zopiclone. Then repeat the therapy cycle. Hopefully along the way, I could phase out or at least reduce the Neurontin dose.

Questions:

1.) Will the above PLMD treatment plan help minimize the risk of dependency and tolerance to temazepam ? Again, I have no history of drug dependency/abuse.

2.) Is standard Ambien now off patent? I read Ambien

went off patent in October 2006.

3.) Are there any new results on Zonegran as a treatment for RLS or PLMD?

Steve M.

Medical Reply

Only a small percentage of people who take benzodiazepines (temazepam) on a regular basis develop tolerance/dependence with the drugs. The smaller the dose (temazepam ranges from 7.5 to 30 mg), the lower the risk. Taking it on an intermittent basis should virtually eliminate all the above risk.

Ambien is now off its patent and generic zolpidem should be available. Although Imovane (zopiclone) is not available in the USA (that is actually a marketing decision of the company that makes the drug). The company that developed the drug (Sepracor) also developed Lunesta (eszopiclone).

The differences between the drugs is that zopiclone is the racemic form that contains both stereoisomers (mirror images containing right and left handed versions of the drug called enantiomers) of the molecule (most all drugs have a 50/50 mix of a right and left sided enantiomers). However, only one of the enantiomers is active. Lunesta is thus the pure form of the drug as it contains only eszopiclone which is the active enantiomer.

It is thought (but not completely proven) that by eliminating the inactive enantiomer, the active one has less competition for binding sites and can be more active and as you then need only 50% of the drug, there are less side effects also. Since there are no head to head studies comparing zopiclone (which is now more cheaply available in a generic form) with its more expensive, patented and purer eszopiclone form, we cannot be really sure that the benefits warrant the higher costs.

There are not studies (published so far) that I know of investigating the use of Zonegran (one of the anticonvulsants) for RLS or PLMD. There is actually one article (published in 2003) describing a case of RLS induced by the drug. There was a pilot study in 2004 (not yet published as a final study) that showed promising results in 24 RLS subjects (6 primary and 18 secondary RLS cases) but until this study is finalized, it is hard to comment. I suspect that when it is studied, we will find that it works as well as Neurontin and the other anticonvulsants (despite the one case report). Currently, many RLS specialists are using a lot of Lyrica as it seems to be effective with fewer side effects compared to Neurontin.

Sent: Sunday, January 21, 2007 3:22 PM
Subject: Serotonin pooling medications with RLS/PLMD?

I have had restless legs since early teens, but very mild and occasional. now at age 48 I have been on Sinemet and now pergolide for about 12 years, pergolide the last 5yrs after I started rebounding on Sinemet. Currently I take 0.05 mg tablets 2 at supper 1-2 before bed.

For 6 or 7 years I have had PLMD which I think of as restless legs on overdrive. its both arms too, always one side of the body at a time, (left arm and leg). Sometimes just one arm or leg. once I had symptoms finally subside one my left side to start up on my right side, that was scary cause it seems to be getting worse.

At the time I was diagnosed with RLS I was also diagnosed with fibromyalgia due to migrating aches and pains with no other medical explanation, and put on amitriptyline 50 mg at bedtime for serotonin pooling. I truly have no aches or pains if I sleep good which the amitriptyline lets me do. When I try to cut back I surface sleep and feel it physically in a few days. I can skip an occasional night but that it.

Is there another serotonin pooling med that does not increase RLS/PLMD symptoms?

Linda C.

Medical Reply

You should be careful with pergolide as it has been associated with damage to the heart valves. A better choice would be Requip or Mirapex.

Serotonin pooling is not really the correct term for the antidepressant drugs (although they do increase the available amount of serotonin). It is thought that the increase in serotonin itself may be responsible for worsening the RLS, so all antidepressant drugs that increase serotonin should potentially worsen RLS. The only antidepressants that do not worsen RLS are Wellbutrin and trazodone, both of which do not affect serotonin.

Sent: Monday, January 22, 2007 12:35 AM
Subject: Mirapex not working?

I have been taking Mirapex for RLS now for about 3 months. I am still experiencing symptoms with no relief and getting little to no sleep.

Any suggestions about my next route?

Medical Reply

If you have titrated the dose of Mirapex up to about .75 mg, then you should go to another drug. At times, when one dopamine agonist does not work, another one (Requip) may and is thus worth trying. Otherwise, the next alternative include the anticonvulsants (Neurontin, Lyrica, etc.) or the painkillers (narcotics or tramadol).

Sent: Monday, January 22, 2007 1:19 AM
Subject: Interactions with medications?

I have RLS and ADHD, I take Quinine every night for my leg problems and take Phenergan every second night to 'knock me out' and sleep, was told today that mixing these drugs can be dangerous especially when I suffer a lot of side effects with the Phenergan, Is this true?

Medical Reply

Quinine has no role for treating RLS and has potential significant side effects. Phenergan does have sleepiness as a side effect but tends to worsen RLS. Both these drugs are not recommended for your problems.

Sent: Monday, January 22, 2007 12:19 PM
Subject: Tolerance on opioids?

I've been taking oxycodone (5-10 mg every 6 hours) for the last two years after exhausting all other medications. I have started taking Requip for the second time (5 mg). My problem is that the oxycodone does not seem to be effective anymore. It seems it no longer controls the pain, which I can deal with, and restorative sleep is a rarity.

Has my tolerance increased to the point where oxycodone no longer works and/or what are my options?

R.T.

Medical Reply

Your dose of oxycodone is on the borderline for causing tolerance, so you could be developing this problem. The best thing to do would be to go off the drug for a few weeks then restart it at a lower dose and keep it lower. You may want to try tramadol while off the oxycodone (and if it works well, you may actually continue it instead of oxycodone).

Sent: Tuesday, January 23, 2007 6:02 AM
Subject: Help for RLS treatment?

I have had RLS for about 40 years. It started when I was eight yrs. old just affecting my feet, having to put them in cold water at night to cool them down. Now it is to the point that it goes up to my groin area. Of course nobody understood the nightly walking around, exercising my legs and the fact I could never sit down in the evening and enjoy a movie with my family.

I used to be able to at least go to the drive-in because I was in my own van and was able to take my shoes off and move around in my van, then I reached the point that I would actually have to get out of the van and walk around so that was the end of that. A few years ago I was put on hydrocodone 7.5 for a muscle pull in my back and realized that it was allowing me to sleep through the night without the need to have to get up and walk around etc.

I discussed this with my primary doctor and he had heard of RLS but did not have a great deal of knowledge on the subject. He was somewhat reluctant to prescribe hydrocodone to me, but did. Oh my, to be able to take my grandson to see Cats and be able to sit through the whole show without the need to remove my shoes and want to run through the aisles to settle me legs down was just the most wonderful thing in the world! I have been taking this medication now for about two years.

I did try Requip when it first come out and it made me very ill, meaning very nauseated and unable to stand up I would say about twenty minutes after taking it. I was up to 2 mg. Needless to say I stopped that! Now it gets complicated... at least for me. Oh by the way I have been to one neurologist that had wanted me to take Neurontin but after reading the side effects I decided not to take that.

Then I went to a RLS support group meeting and went to a neurologist associated with the support group. I did want to stop the hydrocodone. I was afraid of addiction. this was a year ago. After my initial visit he decided that I should stay on the hydrocodone since it was working for me. You see I have only one kidney that was removed in 1991 due to a kidney stone, I have had gastric bypass in 2003, and I am also in peri-menopause.

Sometimes I can take half of the 7.5 hydrocodone if my legs start going crazy by late afternoon or early evening and it works ok. I will then take a whole one about midnight and there are plenty of times lately that I will wake up two hours later, sometimes with my legs going crazy and sometimes just because I just don't know why. I am getting to my whit's end again, not sure if I need to change medication, see my primary, see my GYN, or see the neurologist!

If there is any suggestions you can give me it would be such a great great help! ... I am tired, very tired!
Mary in NY

Medical Reply

Here are several different choices that may help you.

As long as you keep the dose of hydrocodone at a low level (below 15-20 mg per day), the chances of addiction, tolerance or dependence on the drug is minimal. Other narcotics such as methadone may even be more effective and safer.

You may also want to try tramadol (although classes with the opioids really does not have much opioid activity) and is even less habit forming or tolerance and dependence issues.

The Neurontin is a reasonable alternative as are the other anticonvulsants (Lyrica is also a very good choice) as long as they do not cause side effects (typically drowsiness, but you don't know until you try them).

Most patients should be able to get adequate relief of their RLS symptoms without too many side effects. You do need to see a doctor (neurologist, sleep specialists, etc.) who is well versed in RLS and has enough experience with the disorder.

Sent: Jan 26, 2007 10:23 PM
Subject: RLS/PLMD out of control

Hello, and thank you so much for this site!    I am currently taking .25 mg. of Mirapex 3 times a day, late afternoon, evening and bedtime as well as Tramadol 50mg on about the same schedule.  Right now it is not working and I am spending most nights wandering around unable to sit, sleep, read etc.    I just had OHS in December which has certainly made things worse, in addition I have developed anemia (uncertain at this point what the cause is- possible hemolytic anemia) with a hemoglobin low of 7 but with 2 transfusions  up to 9.5.

I have tried several other medications including Neurontin, Keppra, Klonopin, lorazepam, Requip, Amantadine, Codeine 80mg, Tylenol #3  and Hydrocodone 5/500.   Initially the hydrocodone worked really well, now it does not.   The Tramadol actually does better.

My question is for when I am in the hospital more than anything else. The RLS is so bad I walk the halls and seriously considered signing out AMA so I could at least be comfortable walking around.

Is there any temporary medication that could be given to someone in this type of situation?  An injection of a narcotic?   What would happen if I went into an ER with these symptoms, could they help?.

I apologize for the length of this message and thank you for any ideas you might have.

Medical Reply

One of your main problems may be iron deficiency (associated with your anemia).  Increasing your ferritin level (if it is below 45) may be very helpful to improve your RLS symptoms.

When undergoing diagnostic procedures or staying in the hospital (or ER), stronger narcotics may be very helpful.  You can take methadone or oxycodone orally or most of the ingestible narcotics (Demerol, morphine, etc.) should be excellent for the job and keep you very comfortable in those circumstances.

Sent: Monday, January 29, 2007 8:14 AM
Subject: Anxiety or RLS?

I have been suffering weird leg problems for about 2 months now.

I have high anxiety and had a personal family issue happen that triggered bad anxiety attacks, paresthesia in legs, arm, face. all kinds of weird symptoms. One of these was I stared having weird feelings in my legs, paresthesia, feelings of heaviness, no pain, feels like my calves are burning, lower legs feel weird in the shower, stiff?

I went to a neurologist who said all my symptoms are from anxiety and he suggested an antidepressant. I do not want to take these pills, but I have been feeling better since the doctor said I had no neurological issues. But this weird feelings in my legs will not seem to go away, and it is definitely not worse at night, is there at night, but seems to be the same all day long, but is worse when I sit or keep legs still. Everything I read says RLS symptoms are only at night...I was wondering if this is true, or if you can have symptoms at day?

The doctor says the leg problems are from the severe anxiety, but I am having a problem accepting that, because my anxiety has gotten somewhat better in the last few weeks but the leg issue continues daily.

Jackie Y.
Nova Scotia, Canada

Medical Reply

Generally, RLS symptoms occur initially at night (or in the evening) only. As the disease progresses, it can occur earlier and earlier in the day until it is virtually present around the clock. However, there are some exceptions and you could certainly be one of them.
If your symptoms occur only at rest, get better with movement then worse again when back at rest, then it is quite possible that you have RLS.

There is one other key component for the diagnosis; you must have an irresistible urge to move your leg when at rest (while you are experiencing the strange sensations). Without this urge to move, the diagnosis of RLS is unlikely.

Sent: Monday, January 29, 2007 4:31 PM
Subject: RLS intermittent leg compression?

Recently, I had surgery and had intermittent leg compression on my legs after surgery. which helped my RLS . Has anyone else had this experience and an it be used every night?

Laurene

Medical Reply

There was a medical article on the use of counterpulsation (intermittent leg compression for congestive heart failure patients which is quite similar to what you had) that at first showed some promise but in the follow up study was found not to be helpful for RLS (for improving symptoms even when not worn).

However, the RLS symptoms may be controlled (in some patients) by anything that puts pressure on the legs (at least as long as the pressure is being maintained), so the intermittent leg compression may be helpful for nighttime use. There should be no reason that I can see that it should not be safe for nightly use.

Sent: Tuesday, January 30, 2007 1:16 AM
Subject: Hormones and RLS?

I have written to you and received your advice over the last 2-3 weeks, following a serious worsening of my RLS symptoms - for which many thanks. I have sent off for your book, too.

I saw my GP again last week, in desperation, as I had realized myself that Sinemet (prescribed without advice in October 2006) was causing augmentation - and worsening symptoms. My GP admits knowing almost nothing about RLS, but after discussion, suggested codeine, which her Partner had prescribed someone successfully (which I had also heard could help..)..but as I left, she asked whether I was on HRT - an issue I had just started thinking about the day before, as I had, in fact, 'sort of' taken myself off it 2-3 months ago - and was taking it only very irregularly - purely to see whether my menopause symptoms returned.

Because I had suddenly wondered whether THAT could have had anything to do with my RLS worsening, I had restarted it that day I saw the GP. Together we had wondered the same thing, without actually having a clue.

Exhausted, I took a codeine and my HRT that night - and, what a change. I assumed the Codeine had done it. The next night, a bit rested, I risked not taking it and only continued with the HRT. All was still very different - and OK. I couldn't believe it. So it took about 2-3 days of regular HRT-taking for my RLS to almost disappear. It is now 5 days and it is still immeasurably better - indeed, virtually gone.

There MUST be a connection, therefore, with my almost stopping HRT and the increased and marked worsening of my RLS. Has any research been done into this? I thought it must, surely, be of interest.

I am hoping it will continue, as I have gone from being demented and desperate (and exhausted) to normal, within a v. short space of time and feel that this connection has proved itself. I would really value your comments. For information, the HRT I am taking (and have done for many years) is Livial 2.5/Tibolone.

Lisa R. in the UK

Medical Reply

Many women have noticed a correlation with their hormones and RLS. It is not unusual for women to have worsening of RLS symptoms a week or so before their menstrual cycles begin (corresponding to the PMS timing). Also, many women with RLS notice changes (good or bad) with changes in their hormonal status (such as when going into menopause or stopping or starting hormonal therapy).

What makes this difficult to figure out is that some women get better with the same hormonal changes that make other worse. There has been no real research into this issue as yet. Most all the information comes from anecdotal experience with RLS sufferers who have reported these observations (just as you have). Clearly, more research is needed to understand what is going on with the effect of hormones on RLS.

Sent: Wednesday, January 31, 2007 10:44 AM
Subject: RLS & anti-depressants

I've had RLS for as long as I can remember. My parents used to call it "growing pains" when I was a little girl. I'm currently taking an anti-depressant which is an SSRI and I have debated with my physician that the SSRI makes my RLS much worse, which it does. Does anyone know if Strattera (which is a Selective Norepinephrine Reuptake Inhibitor) is ok to use in someone with RLS? I've read that in addition to treating ADHD, it also works on depression. My doctor wants to put me on Klonopin but I can't tolerate it. Lisa

Strattera (and other SNRI's) should not worsen RLS. However, although it may used for patients with depression, it is not really a primary medication for this disorder. A better choice might be Wellbutrin which does not worsen RLS and is approved for treating depression.

Lisa H.

Medical Reply

As you have already found out, the SSRI antidepressants tend to worsen RLS. Although many doctors do prescribe Klonopin for RLS, this drug is more suited to help promote sleep in RLS patients but due to its addictive potential and very long half-life, should be used with caution.

Sent: Wednesday, January 31, 2007 3:41 PM
Subject: Klonopin for RLS?

I suffer from a painful form of RLS and I take Mirapex that has helped greatly, I also have pain induced insomnia and I do not know if the pain or the Mirapex makes the insomnia worse. I take Mirapex .25 mg then .375 mg once a day. I have taken Klonopin .5 to1.0 mg at night to aide sleep to which it has helped. I recently stopped taking the Klonopin over a 6 weeks regimen with no withdrawal symptoms.

I have been off of Klonopin for 10 days now but I have not been able to develop any new sleeping pattern. I am exhausted once again with no sleep. My questions is the following. Could I start taking the Klonopin again at .5 for sleep since I am able to stop it when reaching 1.0 mg or should I use more Mirapex with hope of the additional Mirapex maybe causing a sleep induced side effect as opposed to the insomnia induced side effect. I know the Klonopin works from using it now for almost 2 years.

Any ideas?
Bill in MD

Medical Reply

Mirapex may cause increased sleepiness or insomnia. In your case, insomnia is clearly the more likely side effect. Increasing the dose should only result in increased insomnia.

Although you seem to have done well on Klonopin, it does have an addictive potential (which at times may take many years to become evident) and a very long half-life that may result increased daytime drowsiness (that often is not apparent to the patient). The newer non-benzodiazepines (Ambien, Lunesta) are much better (but somewhat more expensive) choices for chronic insomnia use.

Sent: Saturday, February 03, 2007 5:12 PM
Subject: Surgery and RLS?

I am having a total hip replacement after February 15th, and remembering the agony of awakening after laser surgery on kidney stones and my legs were all over the air and table, I'm terrified of the anesthesia, since I'm not allowed ANY oral drink or medication after midnight for surgery in the afternoon! I take Mirapex quite successfully, .25 mg nightly, and occasionally add .125 mg if needed. I have taken part in 2 Requip research programs, and became nauseated and dizzy from it, even though I stayed the entire program. It is not a drug I can take.

What do you recommend I do to prevent a frightful attack again? My RLS is quite severe, but fortunately responsive to the Mirapex, so far. My neurologist is uninformative regarding pre-surgery.

Barbara, age 79,
Delray Beach, FL

Medical Reply

There is a brochure that you can get from the RLS Foundation that covers RLS and surgery (you can order it over the internet or download it directly) which may be helpful to you and your doctors.

Make sure that they avoid giving you any medications that worsen RLS (download a copy of our medical alert card from our website that has a list of all these drugs and give a copy to all your doctors).

The immediate period after surgery is generally not too bad as they will be giving you large doses of narcotics (by injection) that should relieve any RLS symptoms. Once the pain medication is decreased you must make sure that you are already back on your Mirapex.

If you are in need of treatment while waiting for surgery, an injection of a narcotic or apomorphine (a dopamine type drug like Mirapex) can be very helpful.

Sent: Saturday, February 03, 2007 8:02 PM
Subject: PLMD/ Meds & Addiction/Disability

First of all thanks so much for this informative website. I have been dealing with PLMD 24 "kicks" per hour, plus arm slinging for over 2 years. I've tried Sinemet (didn't work), Klonopin (too much daytime drowsiness), Mirapex (nausea) Requip (terrible vertigo). I take 5 mg of Ambien nightly with some AM confusion or "cloudiness". I have degenerative disk disease in my lumbar spine and take 200mg Celebrex daily. I didn't have PLMD until I took Effexor for over a year.

I want to continue to take Ambien, and try maybe a pain med to see if that would subside the kicking and arm slinging as it seems that I am arousing 100 times nightly. Would you recommend that I add Darvocet N-100, or Ultram along with the Ambien ? My biggest concern has been addiction, but with this terrible disorder I guess that should be the least of my concerns. Doctors around here seem to think Klonopin is the answer to everything and I'm kind of afraid to dose up with it.

One more question please...Would you know if PLMD is defined or considered a disability ? It is getting more difficult to function at work, and no one seems to understand.

JB

Medical Reply

There is considerable debate amongst sleep and RLS specialists whether or not PLMD is a real disorder. This problem has not been well studied which accounts for much of the difficulty is assessing this disorder. However, if you actually wake up and don't get adequate sleep, then the PLMD should be a real disorder in your case.

As far as disability goes, as long as your inability to function due to poor sleep is present then you should be able to support your disability. However, there may be other treatments available that may help you.

Klonopin is a fairly addictive drug that actually does not improve the PLMS but rather prevents arousals from these PLM. Ambien may do the same thing without the concerns of dependence, tolerance and addiction.

The painkillers (Ultram, Darvocet, Vicodin, etc.) are not nearly as helpful for PLMS as they are for RLS. Anticonvulsants often work better. Neurontin or Lyrica may be good choices for your problem.

Sent: Saturday, February 03, 2007 8:48 PM
Subject: RLS Hallucinations

My husband has started his RLS during his participation in the gulf war. By now his symptoms are so severe that he has to medicate every day at 5 pm with 1 mg of Mirapex and again 1 mg at 9pm. Even that is sometimes not enough and he takes an extra .5 after midnight. Two years ago, after several years on Sinemet and then 4 years of Permax he started to have auditory hallucinations. He was switched to Mirapex at that time as well. The hallucinations have been getting more severe. Because he is still active duty this is now jeopardizing his career and he might get medically separated soon.

Neurologists and his psychiatrist have been trying different kinds of meds like Topamax, Valium, Xanax, Requip (even on 5- 8 mg the RLS symptoms did not subside) and Ativan to get him off the Mirapex to see if this is what is causing the side effects of Hallucination. None of these help his RLS so he could stop Mirapex. He is clinically depressed as well and has been unsuccessful on Prozac, Effexor and Wellbutrin and is currently trying Cymbalta.

After some research I have done online we noticed narcotic painkillers can be successful. But being concerned for his liver I would like for him to take something without acetaminophen. I found Percolone as an option. His regular doctor would prescribe him Lortabs without a problem but due to his liver ALT and high AST levels he should take no more then 2 tabs a day and that's not enough to eliminate his RLS and PLMS.

How can we get a the medical community to prescribe a Narcotic without additives. Nobody wants to do that. It makes no sense to me. If we can't get him off the Mirapex soon to rule out the possible Hallucination side effect his career will end 2 years short of retirement eligibility.

Ute

Medical Reply

Unfortunately, the Cymbalta may be contributing to his RLS but if he needs that medication he should obviously continue with it. Although he has tried Topamax, other anticonvulsants (such as Neurontin, Lyrica assuming he has not yet tried them) may be helpful.

Most doctors do have problems prescribing the narcotics without additives as they tend to be the more potent ones. However, I do recommend these narcotics for RLS as the acetaminophen does not add anything to treat RLS and can thus only add needless risk. I commonly prescribe these narcotics (more methadone as I find it works better and is actually safer) for patients with severe RLS or patients with moderate to severe RLS who cannot tolerate other medications.

There are several medical articles that you can show to your doctors to help support the use of narcotics for RLS. In addition, you can bring a copy of my new book  which also details the appropriateness of these drugs for RLS.

A Reply from Ute

Sent: Wednesday, February 07, 2007 3:40 PM
Subject: RE: RLS Hallucinations

My husband was to attend a sleep study last night, but could not sleep due to the severity of his symptoms. The clinic and sleep study doctor wants him to come back next week and obtain medication from his primary care manager so he can get to sleep. Well, taking Mirapex will let him sleep, but also negate his symptoms which we would like to show. He has some old sleep studies before his symptoms were as bad as they are now. That was about 5 years ago and he went to an "awake stage" once every 2 or 3 minutes due to PLMS.

If Mirapex or a sleeping pill lets or makes him sleep for the study, doesn't that defeat the purpose of the study? He was referred to a sleep study center in the hopes that they would be able to prescribe a narcotic instead of the Parkinson's disease medications because the military for some reason cannot do that.

Ute

Medical Reply

It is somewhat hard to answer your question. We normally order sleep studies to answer a clinical question or concern. If it is already known that he has PLMS that cause arousals it is likely that he will still have them (although they may be somewhat worse or better on any given night). If Mirapex is causing hallucinations then it should be stopped (the military should otherwise prescribe this medication if there were no contraindications) and changed to another RLS/PLMD medication. Although the narcotics are helpful for RLS, they generally do not help PLMD as much.

A Reply from Ute's husband, Dave

Sent: Saturday, March 17, 2007 10:46 AM
Subject: RE: RLS Hallucinations

This is David (Ute's husband) writing this time. I'd like to thank you for your responsive assistance so far and let you know the current situation. First, I'm not sure if Ute had mentioned that I also suffer from IBS and have a rapid transit. We believe this undermined the attempt to rule out OxyContin; we usually saw only four hours of relief before having to medicate with Mirapex due to onset of symptoms.

We have now tried Methadone for the past three nights. The first night I took 5 mg at 6 pm, 8 pm 10:30 pm and 11 pm, however was still having RLS symptoms nearly every hour until I medicated with 1 mg of Mirapex. The second night I took 5 mg at 5.30 pm, 9 pm and 10mg at 10.30 pm but still was awakened three times due to symptoms and eventually took .5 mg Mirapex and found relief. The third night (last night) I took 10 mg at 5.30pm and 9.30 pm, again I experienced symptoms and took .5 mg Mirapex.

Each evening the Methadone made it hard to keep my eyes open. I had physical energy but my eyes and brain had a sort of drowsiness. Each morning after I have a drowsiness hangover. Last night I felt warm during the early evening. I was awakened at 12:30 by symptoms, had a powerful headache and felt very, very cold. I was again awakened at 3:10 am by three or four strong heart palpitations, the headache was still there but to a lesser degree.

I was afraid to go back to sleep so I stayed up as long as I could to allow the Methadone in my system to decrease. I took a Mirapex at about 6:00 am and lay back down with Ute to monitor me. While I slept I experienced significant sweating.

In order for me to stay in the AF (I have only 2 years until retirement) I have to get off the Mirapex because of the auditory hallucinations. Do you have any advice on how to introduce methadone in a more safe and effective manner?

Medication I take:
Cymbalta - 60mg; effective for depression, may be compounding RLS/PLMS
Zestril - 5 mg; for blood pressure
[ Mirapex]
[ Methadone]

Medications I have tried:
Sinemet - built up a tolerance
Permax - hallucinations
Requip - up to 5 mg; not very effective; still had hallucinations; 3-4 day trial
Topamax - ineffective
Valium - intermittently effective; daytime drowsiness
OxyContin - 20 mg effective for only 3-4 hours
Mirapex - 1 mg at 5pm and 1 mg at 9 pm - effective for RLS/PLMS, however, auditory hallucinations.

Dave

Medical Reply

Generally, the methadone only needs to be taken about every 6-10 hours (an average of 8 hours for most) as it is a long acting drug. If you need more frequent doses, such as you have been doing, then the dose may be too low. However, 10 mg is the maximum dose that I recommend, so I would not take any higher doses. If it is not effective (or causes too many side effects) at that dose, then it (and likely most all the other narcotics) may not work for you.

Your case is clearly somewhat difficult. It may be very likely that the Cymbalta is worsening your RLS and making it refractory to some very potent RLS medication. It the Cymbalta is really necessary for your depression, then we are in somewhat of a bind (we certainly do not want to worsen a serious depression, even to make the RLS better).

It might be worthwhile switching to Wellbutrin XL (or combining it with a lower dose of Cymbalta) to treat your depression (but only if this is deemed safe by the doctor treating your depression). Another choice is to use Wellbutrin with desipramine (an older antidepressant that seem RLS friendly) that may be effective for your depression yet not worsen your RLS.

In tough cases, there is not always an easy answer. It often requires some trial and error to achieve success.

Sent: Tuesday, February 06, 2007 9:36 AM
Subject: Restless Legs?

According to my wife, my leg twitches during the night. It drives her crazy. However, I do not wake up nor do I know its happening. Sometimes when I am falling asleep my leg will twitch and awaken me but I fall asleep 15 minutes or so later. After that, I am completely unaware that my leg is twitching. If I were not married, I probably would not know about this condition.

We have a hot tub and I'm told that if I go in the hot tub before I go to bed, the twitching decreases are stops. If I run a couple of miles and lift weights before I go to bed, I'm told the symptoms increase. I am going to try to increase my iron and will try vitamins. I sometimes go for a massage which I also believe helps for a day or two. My legs are large and muscular which might also be a problem.

I feel bad for my wife though and I will sometimes voluntarily sleep on the couch to allow her to get rest. I believe that my lower back is the problem. I do not have a "back problem" nor do have any pain in my back but something tells me that stiffness or a disk issue causes the nerve to react and this results in the twitching. I have no empirical proof though.

Jim

Medical Reply

The leg twitch that wakes you up as you are falling asleep is called a hypnic jerk and is very common. The leg jerks when you are asleep that bother your wife are most likely PLMS (see our website for more details) not RLS. As long as you wake up refreshed, this condition bothers only your wife (as you have already noted).

Getting twin beds (and move then 1/2 inch apart at bedtime (or you can just get a king size TempurPedic mattress that will dampen the leg kicks) may help your wife.

Sent: Wednesday, February 07, 2007 1:03 PM
Subject: RLS and SAM-e?

I have had RLS and PLMD for as long as I can remember. About 3 ½ years ago I mentioned to my family doctor that I kept rubbing wholes in my sheets because my legs hurt so badly at night. She started me on Lortab maintenance and when I got pregnant it only got worse (how that was possible I will never know).

After my son was born my RLS did not go back to where it was prior to the pregnancy and the Lortab was just not working any longer. I was then started on OxyContin, 40 mg, 2 X’s a day. That was working and then I got pregnant with my daughter and my legs got worse, my dosage was increased to 3 X’s a day and that worked but when I read up on the medication I was scared to death. I stopped taking the pain meds (I wanted to die) and have been searching for SOMETHING that would help.

I have been told that if I start with Mirapex (or any of the drugs like this) and I choose to stop taking it my pain will come back 10 fold. I have found everything they try just knocks me out but my legs still twitch. The ONLY thing that helped was the pain pills and I do not want to go down that road again.

In the past I have tried massages, wrapping my legs, ice and heat on them, hot baths, hot showers, iron supplements, and anything else someone has said “this has worked for my mom and she has restless leg syndrome”.

I was reading on your website that researchers think that RLS maybe due to a dopamine imbalance? I have just recently started taking SAM-e, which from what I read increases your dopamine and serotonin, is this going to cause me MORE pain??

Candyce S.

Medical Reply

Although we always recommend non-drug therapies to be tried first, patients with more severe RLS almost always require medication to obtain satisfactory relief of their symptoms.

There is no question that some patients do get worse with the dopamine agonists (called augmentation) but these are a minority. You will see a lot of letters and complaints about the dopamine agonists. However, the majority of the patients who do well with these drugs generally do not write (they are the silent majority). Most patients do not have their RLS worsen while on Mirapex or Requip and when they do stop the medication, the RLS symptoms worsen only for a short period (days or a few weeks at most).

It is thought that RLS may be due to an insufficiency of dopamine in the brain but this has yet to be proven. There is no information on the drug SAM-e and RLS. However, drugs that increase dopamine may improve RLS while drugs that increase serotonin levels tend to worsen RLS.

It sounds as if Mirapex or Requip would be a reasonable choice to consider at this point in your case.

A Reply from Candyce

Sent: Monday, February 12, 2007 7:16 AM
Subject: RE: RLS and SAM-e?

Thank you very much for your response. I have been taking the SAM-e for just over a week now and on day 6 I did not have ANY RLS or PLMD, my legs were humming but it was bearable. I am now 4 days in a row without my RLS and PLMD and I attribute it ALL to the SAM-e and increased water intake (8 glasses of water a day). I started taking 400mg but have increased it to 600mg just to see if my humming will go away too.

I pray this is the ‘cure’ I have been looking for.

Candyce S.

Medical Reply

Hopefully, you will be able to sustain your improvement with the SAM-e. Let us know how you do over the next several months.

Sent: Thursday, February 08, 2007 2:43 PM
Subject: Surgery and CT scan with contrast?

A week and a half after a total hip replacement I had to have a CT scan with contrast and venography with contrast. No clots, but it seems as if my RLS really kicked up after these labs. Since being released from the hospital just over two weeks ago, I have been taking Vicodin 7.5/750 every 6 hours and my usual Mirapex (.250 mg at 4:30 pm and .125 mg at 8:30 pm), with RLS breaking through the Vicodin quite a bit. I’m also taking Warfarin – now at 5 mg daily down from 7.5 - 10 mg in the first couple of weeks.

Would the contrast (iodine) cause more RLS symptoms? As my hip heals and I taper off the Vicodin, could I expect Mirapex do its work as usual?

I’m just not sure how to manage my regimen right now. It doesn’t matter too much now since I’m free to get up and wander at night, nap when I can, etc. but I will be going back to work in a month or so and can’t do that without regular sleep.

LS

Medical Reply

None of the drugs or tests you had has been known to worsen RLS.

Many patients have found that their RLS worsens after a major trauma to the body (such as your hip surgery). Part of your problem may be that you have been more sedentary after the hip surgery and as you become more mobile and active (as you have already noted) the RLS will become less of a problem and respond better to your previous treatment.

Sent: Thursday, February 08, 2007 5:32 PM
Subject: Question about RLS

I am wondering what the difference between RLS and neuropathy is. Is there a difference and if so, how does one distinguish the difference?

Karen

Medical Reply

Neuropathy is a disorder of a nerve (the most common type is peripheral neuropathy that occurs in one of the nerves supplying the arms or legs). Although some of the symptoms can be similar to RLS (such as strange feelings in the legs or arms), the neuropathy discomfort is not associated with an urge to move the affected limb, does not improve with activity or get worse with rest and is not worse at night (as is RLS).

Sent: Thursday, February 08, 2007 8:08 PM
Subject: Side effects from Requip?

I'm female, 18 and have been suffering from restless legs since I was 14, and only recognized the syndrome recently. I first described the symptoms to my psychiatrist last year, and he prescribed clonazepam, to be used as needed. This worked well at first, but my condition has worsened since (from a few times a month to several times a day), and the medication has lost it's effectiveness.

I recently went back to my psychiatrist because RLS is having a serious impact on my quality of life. He prescribed Requip (0.25 mg, 2x) I immediately noticed a difference, I haven't had any symptoms since I started taking it. However, I've been taking it for about 6 days now and the side effects are pretty bad. I've been experiencing persistent, horrible nausea, I feel as though I'm hungover. I've also been having very intense, vivid nightmares, and waking up in cold sweats. Are these side effects common? Do they go away, or am I stuck? Even if the nausea goes away, the dreams seem to be getting worse.

I'm also concerned with what I've read about Requip and Mirapex augmenting symptoms after a few months, is this common? I'm pretty concerned about this, especially since this is what happened with the clonazepam. I also haven't been too consistent taking the pills, I'm supposed to take them in am and pm, but mostly I've been forgetting to take them in the pm, but it seems unlikely that this is making side effects worse. What is the likeliness of these side effects disappearing, and is it likely that it will be any better with other medications?

I tend to experience many side effects with all medications I take (Adderall & Cipralex for ADD, Wellbutrin for depression) Any information would be much appreciated, I'm losing hope, especially after hearing that the condition only tends to worsen with age, and it started so young with me.

TT,
Toronto, Canada

Medical Reply

Generally, you should only be taking the Requip an hour or so before your symptoms occur. For example, if you never have symptoms before 4 pm, then your first pill should be at 2-3 pm. If this one pill lasts long enough, you may also not need a second pill which should reduce your side effects from the medication.

The nausea can be helped greatly by taking the medication with food. The hangover problem may improve with time (if not, then this pill is not meant for you). The nightmare problem may also diminish with time or be helped by taking your last dose earlier in the day.

Augmentation is a concern but luckily does not happen that often with Requip and Mirapex and generally occurs infrequently at the lower doses that you are taking.

Sent: Friday, February 09, 2007 12:58 AM
Subject: RLS associated insomnia?

Would it be a good game plan to use .5/1.0 mg. of Klonopin for 4 nights and then Ambien CR 12.5 for 3 nights for severe pain induced insomnia? Along with painful RLS I also use Mirapex that seems to help the RLS symptoms.

I just want to get some sleep consistently without having to go through a 6 weeks regimen to avoid withdrawal from Klonopin which has worked well in the past? I hope to use this plan week after week?

Bill in MD

Medical Reply

You could use your proposed regimen which has a very minimal chance of developing dependence upon Klonopin. However, Klonopin is a long acting drug that can often cause daytime problems (that the user is not often aware of).

You may want to consider Neurontin or Lyrica for your painful RLS symptoms. Once the painful RLS symptoms are taken care of, falling asleep should be much easier. You may then only need Ambien on an occasional basis.

Sent: Friday, February 09, 2007 9:53 AM
Subject: Alternatives to Requip augmentation

Please advise. When Requip (.75 at 3 p,m. and .75 at 9 or 10 p.m.) no longer gives relief (and in some respects seems to actually set off an attack of PLMS within a half hour of taking it), is Permax or Mirapex the preferred alternative for a month or so before resuming Requip -- and at what dosage? A friend has taken Permax for years and recommends it, but I don't find much about it on your web site.

All the neurologist can offer is ,25 doses of Klonopin at bedtime. But we are reluctant to get started on that -- which you seem not too favorable about, anyway, from my readings of your answers to others. We don’t need any more drowsiness during busy daytime hours.

Secondly, is there a conflict or problem with taking Glipizide for diabetes and Requip? The Requip seems to have lost its effectiveness after having started on glipizide.

Ron J.
San Marcos, TX

Medical Reply

You can go to a higher dose of Requip (after discussing this with your doctor) and see if it helps (or hinders) the problem. If that does not help, Mirapex may be helpful although there is a good chance that you may need a different class of medication. We do not use Permax very often any longer as it tends to have many significant side effects (such as nausea, dizziness) and is also associated with damage to heart valves (although this very serious problem occurs somewhat infrequently).

You are correct in that I do not recommend the use of Klonopin for RLS (although there are a minority of RLS specialists who do use this drug). If the dopamine drugs do not work for you, then I recommend trying the anticonvulsants (Lyrica, Neurontin, etc.) or painkillers (narcotics or tramadol).

There is no known interaction between Requip and glipizide.

Sent: Sunday, February 11, 2007 3:08 AM
Subject: PLMD?

I am a 61 year old white male. After suffering periodically for years and not getting any help in knowing what was going on, it seems after reviewing my symptoms on the web, I have PLMD. It occurs once every month or so and sleep is not an option (this is being written at 3 am).

Other than sleeping pills, is there any medication that can be taken on an irregular basis as the symptoms occur to alleviate the problem in a short period of time?

Medical Reply

Taking Mirapex or Requip may help in about 1-2 hours. Sinemet (the quick acting type, not the CR version) may work in about 15 minutes (on an empty stomach) to about 30 minutes.

Sent: Thursday, February 08, 2007 4:04 AM
Subject: New diagnosis

I was just diagnosed with RLS with severe sleep disturbance. My doc started me on Requip 1mg. I was just wondering if any one knows how long it usually takes to work. I took it for the first time last night and while it changed the quality of the discomfort, (not really for better or worse, just different) I still woke quite a few times during the night and when I woke, I was more awake than normal and I guess much more aware of why I was waking (I didn't even know I had RLS until diagnosis with sleep study).

Do a lot of people with RLS require sleep aids as well? I already take hydrocodone for back pain associated with past surgeries.

Medical Reply

Assuming you do have RLS, then the hydrocodone should be relieving most of your symptoms. As this does not seem to be the case, there is clearly some concern that RLS may not be the correct diagnosis. Sleep studies do not diagnose RLS (but may diagnose PLMS which is often associated with RLS but may occur on its own).

Requip works immediately (within an hour or so) once you hit the right dose. Normally we start at .25 mg and slowly work up to a higher dose (and stop once an effective dose is reached).

Sent: Tuesday, February 13, 2007 3:08 PM
Subject: Requip and insomnia?

I have been taking Requip .25 mg for the past 4 years. My doctor prescribed in addition to Requip, Immovane 7.5 mg as I had a hard time falling asleep and was waking up with my mind racing. I had taken these for three years. This past year I started waking up again with my mind racing.

My doctor took me off of Immovane and in addition to Requip prescribed trazodone 50 mg. This seemed to work for about three months and I started waking up again. She than prescribed trazodone 100 mg. I have been waking up at least 3-4 times with RLS with pain. I tried to increase Requip to .5 mg but still doesn't help.

Does trazodone lessen the effect of Requip because I have noticed the RLS back and haven't had this problem in 4 years. Can you suggest any other drug that could help me with the mind racing at night?

Linda,
Pickering, Ontario, Canada

Medical Reply

Trazodone is actually one of the very few RLS friendly antidepressants. It is used due to its otherwise unwanted side effect of drowsiness as a non-addicting sleeping pill. It is not uncommon for tolerance to develop to trazodone at which point it does not work as well (which is likely what you are noticing). The trazodone should not otherwise affect the function of Requip or your RLS.

The Requip may create insomnia and could be part of your problem. It might be helpful to add (or completely change to) an anticonvulsant (such as Neurontin or Lyrica). They often do a reasonably good job controlling the RLS and often do have sedation as a side effect which may be helpful to promote sleep.

Sent: Tuesday, February 13, 2007 5:42 PM
Subject: RLS

I have been troubled with RLS for as long as I can remember. Earlier on it bothered me only now and then at night. Now it bothers me whenever I am awake and not actively involved in something that is genuinely interesting. I have tried most of the standard drugs.

Several months ago I started Mirapex but it resulted in hallucinations (the doctor's notes say that the Mirapex was the culprit but I seem to remember another drug, Zyprexa or something like that, that I took only one time - the night before the first series of hallucinations). Now the doctor wants me to try Requip but I am leery because I understand that both drugs are in the same family. While I was taking the Mirapex I fell several times at night while asleep. The falls didn't wake me immediately but I have two bulging elbows from falling backwards and a hole in the wallboard from falling somewhat forward.

I am very sleepy mornings but that wears off by mid-afternoon. That makes me think that the drowsiness is not just being tired from a minimal period of sleep, but from some other drug. I also take Lipitor, Topral, and flecanide.

Robert M.

Medical Reply

Mirapex has been implicated (although not very commonly) for causing hallucinations, but this is usually at the higher doses used for Parkinson's disease. It is hard to know whether this problem occurred to your use of Zyprexa.

Mirapex does more frequently causes sleepiness (or insomnia in others) and if that is the case for you, then stopping the drug would be very wise. It is reasonably likely that Requip may cause the same problem but only trying it (if you are brave enough) is the only way to find that out for sure.

It may be reasonable to switch to a painkiller (narcotic or tramadol) and see if one of those drugs resolve your RLS symptoms without causing side effects.

Sent: Wednesday, February 14, 2007 9:39 AM
Subject: Drug interactions of anesthesia medications and RLS medications?

My mother suffers from RLS and is currently on Mirapex. She is likely to have her thyroid removed (under general anesthesia) because it is enlarged and causing hoarseness and choking type spells.

Her experience after her last surgery under general anesthesia was extremely challenging. The anesthesia and/or anti-emetics seem to worsen the RLS symptoms. She was of course, needing to sleep off the effects of these very powerful drugs and unable to due to the RLS symptoms, she was in a miserable place with various medications colliding in her body.

Any recommendations for enduring general anesthesia and post general anesthesia without worsening RLS?

Also, are Mirapex and Requip so similar that if Mirapex is losing its effectiveness it is not worth trying Requip?

Jennifer G.

Medical Reply

You can download our RLS Medical Alert card from our homepage. It contains most of the drugs that RLS should avoid. Give a copy to all your doctors including the surgeon and anesthesiologist and impress upon them the need to follow this advice. The pain medication (narcotics) should help immediately after surgery (if given in sufficient amounts) and once she is able to take oral medications, then she quickly restart her RLS pills.

If the Mirapex is not working as well, your mother may need a higher dose. However, some patients may do better when changing to another dopamine agonist (Requip in your mother's case), although this does represent a minority of patients. If this does not help, then adding or changing to an anticonvulsant or painkiller may be very helpful.

Sent: Wednesday, February 14, 2007 4:53 PM
Subject: Nystagmus with Requip?

I have been taking Requip for 8 weeks. Started with .25 mg and for the last 6 weeks I'm at 1mg. I must say, I am very pleased overall with the cessation of my leg cramps, which I suffered with for the past several years. I am having some augmentation problems.

I went to my eye doctor today with a complaint of eye fatigue and some slight peripheral vision problems. Turns out I have nystagmus, which is a condition marked by uncontrollable eye movements. With me it is very slight but noticeable, especially when driving. Not enough to be dangerous, but enough where I wouldn't drive for more than 1 hour at a time at this point.

So, here is a new side effect NYSTAGMUS. Never saw this particular problem noted by anyone. Anyone else? By the way, I am not on Neurontin, which I saw had the possible side effect of nystagmus. This problem is unquestionably as a result of the Requip. Nothing much can be done to alleviate this problem except to modify my Requip dosage or change to Mirapex (which I am not anxious to do).

Any comments on the nystagmus side effect?
Jeffrey K.

Medical Reply

I have never heard of nystagmus with Requip but anything is possible. It is still more likely that this problem is due to something else. The only way to figure this out would be to stop the Requip and see if the problem resolves. You could use a painkiller while of the Requip.

Sent: Thursday, February 15, 2007 1:09 AM
Subject: RLS and Phenergan (promethazine)?

I am on disability for Panic Disorder with Agoraphobia. It is chronic and also manifests itself with extreme nausea and vomiting; I have a special 10 dollar bucket by my bed and use it about once a week. This mostly coincides with things that I may have planned in the future.

Im on 60 mgs. Prozac A.M. and 2mg Klonopin four times a day QID. I also have recently been given Phenergan (Promethazine) to help me shop without vomiting or nausea 25 to 50 mg. once a day PRN. It works really well and helps me a couple of times a week along with my staple meds.

I have been having symptoms of RLS in the last few months that are quite unbearable...Pacing floors, aggravating my comforter with my feet etc. Basically all of the signs.

I'm 35 and am a textbook case for Panic with agoraphobia that started in my late teens/early twenties. Telling you how I got by is another story but finally got help in '98 hence the high dose of Klonopin today.

Is the Phenergan / Promethazine the problem because I occasionally pop an extra Klonopin to help me settle but it doesn't work? If the promethazine is a possible problem are there other meds you may suggest that help with the nausea/vomiting that do the job orally or otherwise?

Medical Reply

Phenergan is one of the drugs (you can download our RLS Medical Alert card that has most all the other drugs) that commonly tend to worsen RLS. Alternatives include Kytril or Zofran which are extremely effective, do not bother RLS at all but are very expensive. The only cheaper alternative is domperidone which is available only in Canada and Mexico.

Your Prozac may also be adding to your RLS problem. Wellbutrin is one of the few antidepressant/anti-anxiety medications that does not worsen RLS but is may not work as well the Prozac for your panic disorder.

Sent: Thursday, February 15, 2007 12:03 PM
Subject: Darvocet not working??

I would greatly appreciate your help on this matter. I have been through living hell dealing with both severe daytime RLS and bipolar disorder. Given the fact that Mirapex and Requip don't work well for me, I have been prescribed both Klonopin and Darvocet 100 tablets.

Both worked well for about six weeks, but know my RLS symptoms are returning. Am I building up a tolerance to Darvocet?

Shawn

Medical Reply

It is les likely that you should become tolerant to Darvocet within 6 weeks (although anything is possible). It may be that other factors are causing your RLS to worsen and that you may need a stronger narcotic to control your symptoms. You may also want to consider the anticonvulsants.

A Reply from Shawn

Sent: Saturday, February 17, 2007 6:14 AM
Subject: Re: Darvocet not working??

Would Ultram be a better choice? Is it more powerful?

Shawn

Medical Reply

Ultram is more potent (for both painkilling and RLS) than Darvocet (for most). It is often as potent as Vicodin 5 mg. It is a very reasonable choice for many RLS sufferers as it is not an opioid, has less of an addictive potential (very small) and much less of a side effective potential.

Sent: Saturday, February 17, 2007 5:05 AM
Subject: Antipsychotic drugs and RLS?

I have had RLS for approximately 10 years. I also have had insomnia, unrelated to the RLS for approximately 25 years. I have tried every sleep agent known to man. The only drugs so far that seem to work are the antipsychotic agents. I have tried Seroquel and Zyprexa, both of which severely worsens my RLS. I also take Mirapex.

Do you have any recommendations for a strong sleep agent that won't interfere with my RLS?  I have already tried Klonopin and pretty much all other benzodiazepines, chloral hydrate, Lunesta, Ambien, Restoril....you name it, I have tried it.

Are there any other antipsychotic agents that you could recommend?

Brens

Medical Reply

Abilify, one of the newer antipsychotic agents, has some dopamine effects which makes it potentially RLS helpful or friendly. I have received some reports about RLS patients being helped by this drug but some others have not benefited or actually worsened with it (like anything else with RLS, there are many exceptions to most rules). Whether it would help you sleep is an entire other unpredictable issue.

You may want to try Rozerem which is a new drug that works to promote sleep naturally through the body's own melatonin system.

Sent: Tuesday, February 20, 2007 11:20 AM
Subject: RLS and depression?

I have suffered from severe depression and RLS since I was a child. I took Tofranil for 20 years, which was fairly effective for the depression, but was taken off of it because my doctor said it could worsen the RLS. Since that time, I have taken many antidepressants with little success, and in some cases, adverse side effects have arisen, i.e., Wellbutrin, Lexapro, and recently, Cymbalta.

What classification of antidepressant is the most likely to work with Mirapex, which I take 1 mg. of daily?  I took myself off of Cymbalta because of heart palpitations, shortness of breath, spikes in body temperature, extreme agitation, and insomnia.

JRW

Medical Reply

All the antidepressants tend to worsen RLS except Wellbutrin, trazodone (a mild to moderately effective drug at best) and possibly the older drug, desimpramine. Having said that, if you do find a drug that works well for your depression, it is often better to take it (and treat your severe depression adequately) and just treat the RLS (whether it is unchanged or worsened) as needed.

Sent: Tuesday, February 20, 2007 12:46 PM
Subject: Requip and drug addiction?

I have had RLS for 35 years and did not know what to do. I heard about Requip, but I also heard that if you had a drug addition in your life it could some how bring that craving back. I would not take anything that would do that. please let me know if that is right or wrong.

Glynda

Medical Reply

Requip should not bring the craving of drug addiction back. In some rare cases, it may cause compulsive gambling or other compulsive behavior (such as sexual) but as long as you are aware of this unusual issue, it should not be a problem.

Sent: Wednesday, February 21, 2007 7:51 PM
Subject: Parkinson's patch?

Could you please tell me what you know about the Parkinson's patch (transdermal rotigotine) that is expected to be approved here in the US? Will it have possibilities for RLS?

Dave R.,
Lexington, KY

Medical Reply

It is currently being studied for RLS and should be very helpful for patients with RLS that starts in the morning and last all day. It may also help patients who have trouble with oral preparations of dopamine drugs.

Sent: Wednesday, February 21, 2007 9:20 PM
Subject: Caffeine and RLS?

I understand that caffeine can exacerbate RLS. How much is too much in regards to tea and dark chocolate on a daily basis? I would imagine that time of day would be an issue also.

Thanks from a strong tea fan and dark chocolate addict,
George T.

Medical Reply

The amount of caffeine that worsens RLS can vary depending upon time of day (as you have already noted) and more so, depending upon your individual sensitivity. Some RLS patients can drink lots of coffee without problems while others may react to a small amount of chocolate.

In general, it is best to change to decaf coffee or tea.

Sent: Thursday, February 22, 2007 2:48 PM
Subject: Zopiclone/Benzodiazepine Questions

I currently have no prescription coverage. For that reason, I prefer to use zopiclone since it is much less expensive than Lunesta. I found a source at GetCanadianDrugs.com that costs $50 plus S&H for 100 of the 7.5 mg tablets. Lunesta costs about $400 for 100 of the 3 mg tablets. I am currently trying Zopiclone. So far, it does not seem to help very much.

What is the highest safe dose for zopiclone and Lunesta ?

When I received your last letter, I discontinued temazepam. I also inferred from your letter, that if one benzo has tolerance issues it is wise to avoid all benzo's. Are all benzo's similar acting and therefore not good candidates for trials?

Steve M.

Medical Reply

Lunesta's maximum dose is 3 mg while zopiclone is 7.5. Exceeding those doses usually do not provide much additional benefit but does expose you to additional potential of side effects.

All benzodiazepines act upon the same receptors. The only differences are potency and 1/2 life (which determines how long the drug acts in your body). Equivalent doses of benzodiazepines should result in similar problems.

Sent: Thursday, February 22, 2007 5:42 PM
Subject: Side effects of nausea

I am a 62 year old woman who has had RLS for 3 years. I started with Mirapex and had strong nausea as a side effect. Then I changed to Requip twice a day, taking domperidone a half-hour before meals and Requip. I continued to experience nausea.

In the past 2 months, I have had increasing bouts of waves of nausea & retching exactly one hour after taking Requip. These waves occur every once in a while all day and sometimes wake me at night.

Should I change medication again or are there ways to manage the nausea? It's a very embarrassing side effect while you're teaching. Please note that the symptoms of RLS almost completely disappear with the two 2 mg doses of Requip.

Sheila

Medical Reply

Requip's most common side effect is nausea. You may be able to decrease this problem by taking the medication with food (the more, the better). This may delay the onset of action of the drug (by an hour or so) but you can offset that issue by taking it earlier.

If that does not help then changing to a painkiller or anticonvulsant may be a better choice. You may also consider decreasing the Requip and adding it to one of the above drugs.

Sent: Thursday, February 22, 2007 7:44 PM
Subject: Wellbutrin & Requip?

My mother has RLS and has been on Wellbutrin for depression because her husband died last October. The doctor gave her Requip for the RLS so she can sleep at night. She is used to taking her Wellbutrin at night and the doctor told her not to take the two medicines together.

She has tried taking Wellbutrin in the morning and Requip at night and the RLS is worse. Can she safely go back to the Wellbutrin at night? She takes .25 mg Requip, one in late afternoon and 2 at bedtime.

Donya W.

Medical Reply

It is generally advised that Wellbutrin be taken in the morning. However, there is not interaction with Requip so the two drugs can be taken together.

Sent: Sunday, January 28, 2007 10:01 PM
Subject: Ultram for RLS

I was so pleased to see you recommend Ultram to an RLS sufferer. I have horrible RLS and after trying most everything, settled in on Ultram. I've taken it twice a day (50mg) for over 5 years. I've never had to increase the dosage. It works very well for me. I realize that some might not have that kind of experience with it, but it is definitely worth a try.

Pat T.

Sent: Tuesday, February 27, 2007 10:49 AM
Subject: Mirapex and Requip?

I tried Mirapex for a few months for my RLS and it did help the restless leg problem but I had terrible insomnia. I was just recovering from a total knee replacement and my RLS symptoms were definitely worse. When I was taking Vicodin for the surgery pain my RLS was the best. I can see why people get hooked on Vicodin.

I am on Requip now and it has helped to relieve the RLS and I am sleeping at night. But at times when I have worked and been on my feet for hours, my RLS is just so bad. I can't sit and I feel so restless, standing is the only things that feels comfortable, but I want to rest. The doctor has prescribed Valium to use during those difficult times but it really does not help much.

Is it possible to take Mirapex during the day when I am having a difficult day, usually between the hours of 4-8pm, and still take the Requip at bedtime? Requip works well but I can not take it during the day with side effects of nausea, dizziness, and sleepiness. I take Requip right before bed.

Martha,
California

Medical Reply

There should be no problem taking the Mirapex during the daytime and Requip at night. In addition, you could use the occasional Vicodin when your RLS is acting up and the regular medication does not help.

Sent: Friday, March 02, 2007 7:04 PM
Subject: What to do with RLS while on trip to China?

Any thoughts on how to cope with a 15 hour trip plus several hours waiting at San Francisco airport (before departure) and crossing five different time zones? I have daily moderate to severe RLS and I take 0.25 mg Mirapex in the evening.

Regis L.

Medical Reply

You may need the Mirapex up to 3 times per day (if tolerated) for that trip. I would also get some Vicodin from you doctor and take one, only if necessary, up to 3 times a day in addition. This should easily get you through that trip.

Sent: Saturday, March 03, 2007 6:40 PM
Subject: RLS Concerns?

I wish I had done my homework first! I am an 83 year old woman who is suffering from RLS. Your RLS Foundation is a wealth of information which has inspired me to read perhaps 50 of the letters. I have even gone into other research websites, looking for some answers.

I live in Wisconsin, and the only RLS support group I can find is in Sheboygan, which is over 100 miles away. Attending that support group is not practical, and I hope you can help me. I suspected I had RLS over two years ago, but thought I could handle it. I finally went to a doctor in September, 2006. He started me on Carbidopa (25mg) / Levodopa (100mg), once a day. Two weeks later I was worse.

I went back to my doctor who increased the dose to twice daily. Two weeks after that, I called in and told the nurse my RLS was far worse as I was having problems day and night. My doctor then increased my Carbidopa/Levodopa to four pills, four times a day, which I literally split in half and take eight times a day. I had been rubbing a washcloth with cold water on my legs to relieve the sensation. Then, on February 21st, I put diluted rubbing alcohol with water on my lower legs to get some relief, and my RLS went haywire.

My lower legs were red and swollen and the RLS sensation was in both legs. My son (who is an RN) said he would take me to the Emergency room if it got worse. Fortunately the sensation gradually (finally) wore off, but my legs got dramatically weak. I called the doctor the next day. He said there was nothing he would/could give me. He said I should gradually get off the Carbidopa/Levodopa so he could establish a baseline.

As I write this, the RLS seems to be under control, but my legs are very weak. I am afraid to decrease the Carbidopa/Levodopa as I don’t want the RLS sensation to come back. I feel I am in a “catch 22” situation. I don’t even know how to wean myself off the medicine. I’m desperate.

I read about the side effects of taking Carbidopa/Levodopa. Are weak lower legs a side effect? I do not want to go into heavy meds like the ones mentioned on your website. Is there an alternative?

R

Medical Reply

Your problem has a very simple answer.

Sinemet (cabidopa/levodopa) is not recommended for the daily treatment of RLS. If taken daily, it almost always worsens the RLS (called augmentation) forcing you to take more and more of the drug, which in turn worsens your RLS. You must get off the drug, but you may need some pain medication (such as Vicodin) to cover your RLS symptoms for about a week to 2 as the RLS will worsen temporarily off the Sinemet.

Once you are off the Sinemet (or even as you stop the Sinemet), you can start on Requip or Mirapex which are currently the best 2 drugs for RLS and the only drugs that approved by the FDA to treat RLS.

Sent: Wednesday, March 07, 2007 11:02 PM
Subject: RLS and ringing in ears?

For as long as I can remember having RLS (about 10 years now) I've had a ringing in my ears. I have never associated the two before until reading a similar letter on the site. Is this common?

I take no medications for my symptoms or ringing in my ears. Whenever I start to get the creepy-crawleys I get up, make snack (usually just a bowl of cereal or something similar) and go back to bed. I would say that this calms my legs down 90% of the time.

Brian J.

Medical Reply

There is no known association between tinnitus (ringing in the ears) and RLS. They are both common enough disorders to make the chance coincidence of them occurring together reasonably likely.

Sent: Thursday, March 08, 2007 1:50 AM
Subject: My successful homemade "cure" for RLS!

I am fifty-three years old, and eight or nine years in menopause. I did not develop "Restless Leg Syndrome" until a few years ago. I think it's probably a part of my Menopause experience.

Here's what I've discovered, and it's an easy, natural treatment, even though I've read that Women in Menopause need LESS iron in their diet. I've learned through trial and error that I actually need MORE, now. My remedy - Heme Iron (in the form of grilled hamburger) every two or three days, on an ongoing basis, coupled with regular WALKING exercise, of at least 40 to 60 minutes a day.

Since my old-fashioned, homemade "cure" I haven't been bothered by RLS, AT ALL! I intend to continue my Heme Iron/Walking program! It sure beats the (restless) alternative, and there are NO side-effects!

Nancy F.

Medical Reply

It is likely more correct to say that after menopause, the loss of iron decreases in women (due to the elimination of the loss of iron from blood loss during menstrual flow). However, if there has been an iron deficiency before menopause started, it may persist and need to be treated just as before menopause.

Although red meat does contain significant amounts of iron, it is unlikely that 2 hamburgers per week will treat significant iron deficiency. The intake of hamburgers may be helping you but it is not clear to me as to how this is happening.

Sent: Friday, March 09, 2007 10:56 AM
Subject: New book on RLS.

I have been troubled by RLS most of my life. I am now 85 and can attest that RLS increases with age. However, at the moment Requip is doing a fairly good job for me.

What I want to do, however, is to recommend the new book "Restless Legs Syndrome" by Buchfuhrer, Hening and Kushida. I have read it carefully from beginning to end and it is the most complete and trustworthy book on the subject ever written. Chapter 12 ("The Patient's Role in Managing RLS") alone is worth the price of the book.

Read it and I would guess that you will know more about RLS than 99 percent of the doctors in America. I even found myself informing the sleep specialist with who I have been working. Great book.

Robert M.

Sent: Wednesday, March 14, 2007 12:22 AM
Subject: 5-HTP with Requip and Mirtazapine OK?

I have fibromyalgia with sleep apnea and RLS. I'm taking Requip and now trying mirtazapine. Have you heard of 5-HTP. If so, is that safe to take along with my other drugs?

E.S.

Medical Reply

Remeron (mirtazapine) itself may worsen RLS, so care should be taken with this drug.

5-HTP (5 hydroxytryptophan) is decarboxylated to serotonin (5-hydroxytryptamine or 5-HT) in the body. It is thought that taking 5-HTP may increase serotonin levels (much as the SSRI antidepressants like Prozac) and may thus lead to improved well being. However, that has never really been proved and real medical studies are still ongoing.

Nothing (that I could find) is really known about the effect of 5-HTP on RLS. If it does increase serotonin in the body, then it may worsen RLS as do the SSRI drugs. Therefore, it should be taken with caution (if at all).

A Reply from E.S.

Sent: Wednesday, March 14, 2007 7:50 PM
Subject: Re: 5-HTP with Requip and Mirtazapine OK?

Thank you very much for answering my questions. I also have a moderate-severe case of sleep apnea from the fibromyalgia (now on a CPAP machine) and had heard that Remeron had indirectly been connected with reducing sleep apnea attacks by 50%.

I have RLS pretty severe as well since it affects my arms, legs, and back. At this point 1 mg of Requip has been helping my RLS. After hearing all this, you still would advise against taking Remeron?

E.S.

Medical Reply

Sleep apnea may cause fibromyalgia symptoms but not vice versa. If the sleep apnea is controlled by the CPAP then there should be no additional benefit from Remeron (which I am not sure helps sleep apnea in any way except possibly by reducing REM sleep where sleep apnea is more active).

If however, you feel that the Remeron significantly helps your fibromyalgia, then it may be worthwhile. However, you might want to see how the RLS and fibro do off the drug.

A Reply from E.S.

Sent: Thursday, March 15, 2007 12:14 AM
Subject: Re: 5-HTP with Requip and Mirtazapine OK?

Thank you so much again for answering my questions. I have one more if that's OK, and that is what is the average length of time someone with RLS will be on Requip before need to switch to something else?

E.S.

Medical Reply

That is completely unknown. Most often, it is indefinitely. Most do very well with the drug. We often only hear from the "failures".

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