Patient letters on RLS symptoms and remedies- Page 70

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Sent: Monday, September 11, 2006 6:17 AM
Subject: Augmentation with Requip?

I have had moderate to severe RLS for a little over a year. I believe it was triggered by Hepatitis C treatments which caused me to become anemic etc. I have had my blood work checked repeatedly and almost everything is back to normal - iron levels have been checked repeatedly as well as B12 and folic acid. I also experience PLM during the night, not sure how often as my boyfriend has now given up and sleeps in a separate bedroom (he often has to get up a 4:00 am and needs to be able to sleep).

I take 2-3 mg of Requip at night but I believe I am at a stage where augmentation is occurring. RLS starts at any point of the day if I begin to get sleepy. Naps are impossible etc. I also take Zyrtec, Ambien CR, an occasional Sudafed for allergy congestion, 10 mg of Flexeril at night and .5 mg of Klonopin. I sleep but often have a tough time getting moving in the morning.

I have moderate to severe pain and stiffness throughout my whole body. I can gauge what kind of night I've had by the degree of soreness. Often in the morning I need 5 mg of Percocet to get moving quickly. I'm tired of drugging myself at night and keep hoping for other answers. My doctor now wants me to try a new version of Neurontin called Lyrica. I also take milk thistle and an immune system booster that is pure olive oil extract.

Any suggestions at all has to how to reduce the Requip temporarily so that it works again would be appreciated and any ideas at all would be a great help. I contacted a doctor in my area who was listed on the RLS website but he doesn't seem to really know any more than my primary doctor. I live in northern NJ and have not been able to find a support group nearby. I would love to be become part of a support group as this has been going on a long time and most people don't really understand how disruptive it can be.

Lynn H.

A Medical Reply

If you are indeed getting augmentation from the Requip, then it is best to taper/stop this medication. Often, after about a month or so off the drug, it may become more active again and do well at a lower dose. It may even be a better idea to change to Mirapex after the month off Requip (same class of drug but may have a different response).

Lyrica is a reasonable choice and if it does not cause side effects (sleepiness, dizziness, etc.) then it may help your RLS. Your Zyrtec pills may cause some worsening of RLS so a change to Allegra or Clarinex may be helpful. Flexeril has no role in RLS. Klonopin is an addictive drug (for many) and should be taken very carefully. It has a 30-40 hour half-life as is very often responsible for next day drowsiness (which patients are often not aware of).

Percocet (although I prefer methadone) would be a good choice to take once or twice daily to control your RLS while you are stopping the Requip and waiting to restart a dopamine agonist.

Sent: Friday, September 15, 2006 8:44 AM
Subject: Isotonix Formula Multi-Tech

I started taking an Isotonic form of multi vitamin with iron about 2 weeks ago; a little history; I take 20 mg Paxil a day and at times I suffer from RLS (about 2 times a month), lately I have had insomnia, I never have trouble sleeping; and the RLS has also been kicked into the mix; could there be a connection between the vitamin that I started taking ? With Paxil I have never had trouble sleeping.

Lori Ann R.

A Medical Reply

There should be no reason for the multi-vitamin to worsen RLS unless it contains some additives that are not typical. Paxil often worsens RLS but if you have been on this drug for a long time without problems that should not be the problem. I would look for another cause of your current problem.

Sent: Saturday, September 16, 2006 4:16 AM
Subject: Requip and Nexium?

I have been taking Requip for RLS for about a year. Three weeks ago my doctor increased my dosage from 1mg to 2 mg per day because the lower dosage was not effective. The relief was immediate but the side effects (nausea and indigestion) were more pronounced and OTC products did not help. Earlier this week my doctor gave me a prescription for Nexium, 40 mg per day, and the nausea and indigestion disappeared.

But my RLS symptoms came back with a vengeance. Naturally, I am curious if there is any correlation to my taking the Nexium and the re-appearance of RLS or if it is just a coincidence. I will be contacting my doctor, but I have also come to value and trust your opinion and advice.

Jim D.

A Medical Reply

Nexium has no known affect on RLS or Requip (nor have I ever seen a problem with Nexium and RLS). Increasing Requip brings with it the temporary risk of nausea, especially when the dose is increase is large such as in your case (I usually increase at the most by .25 to .5 mg). The nausea and indigestion may have already been in the process of going away before the start of your Nexium.

If increases in Requip are resulting in worsening RLS symptoms, augmentation should be considered. In that case lowering or discontinuing Requip may be wise while replacing it with another drug (opioids, Mirapex, Neurontin).

Sent: Sunday, September 17, 2006 6:11 AM
Subject: Ambien and Remeron?

my sleep doctor suggested I take Klonopin for my RLS and Ambien for sleep. The combo works pretty good but Klonopin tends to drag into am. For some reason the Ambien does not work by itself, only in combo. What about taking Ambien and Remeron together?

Joan R.

A Medical Reply

I generally do not like Klonopin for RLS as its only use is as a sleeping pill (which is done as well by many other shorter acting pills) and with its 30-40 hour half-life, next day sedation is very common. Ambien and benzodiazepines act on the same receptors (except that Ambien acts more specifically on only one of the 3 benzodiazepine receptors). You might as well take higher doses of Ambien (they allow up to 20 mg in Europe) to get the same result for sleep.

Remeron worsens RLS but can be taken with Ambien.

Sent: Sunday, September 17, 2006 11:20 AM
Subject: Mirapex and pseudo ephedrine HCL

I've had RLS all my life and have taken 1mg of Mirapex every single evening for several years with no side effects and great relief. I am very congested right now and would like to take pseudoephedrine HCL (Walgreen's brand) but see a warning against taking this decongestant with an MAOI inhibiter.

Does Mirapex qualify as an MAOI inhibiter and can I take this decongestant with Mirapex?

Bonnie S.

A Medical Reply

Mirapex is a dopamine agonist and not a MAO inhibitor. You can take Mirapex with a decongestant as long as there is no combined antihistamine (as is common with OTC cold pills).

Sent: Sunday, September 17, 2006 2:27 PM
Subject: RLS cold sensations?

I have been diagnosed with RLS and my doctor has put me on Requip (1.5mg) at bed time. This has really helped my Restless Legs However, when I take these pills before bed, my legs feel cold, like I can't get them warm enough. Only in my feet and lower legs. Does anyone else have these symptoms?

What can I do to help this in the evening? Since taking Requip, I can't sleep a full nights sleep. I wake up every hour or two until it gets daylight outside, then I sleep a restfull sleep for 2 or 3 hours. This is driving me crazy, any ideas out there?

Sue P.

A Medical Reply

Your cold leg sensations are not typical of Requip nor have I ever heard of this side effect (but anything is possible). If your doctor started you on 1.5 mg without working up from smaller doses it may be that your dose is too high and may thus be responsible for your insomnia. If that is the case, then you may want to slowly cut back (by increments of .25 mg every few days) until you reach the smallest dose that takes care of your RLS symptoms (and hopefully does not affect your sleep).

If that does not work or is not applicable in your case, then perhaps a change to Mirapex might solve the problem.

Sent: Sunday, September 17, 2006 3:05 PM
Subject: Itchy scalp from clonazepam?

I recently started clonazepam 1 mg at bedtime for my restless legs. I am sleeping better and waking up feeling more energetic. But, my scalp is extremely itchy, burning and sore. Could it be from the clonazepam?

Jenny A.

A Medical Reply

Although that is not a known common side effect of clonazepam if your scalp problems started with taking clonazepam then it is likely that they are linked. I generally do not like this drug for RLS (see the many other emails) and suggest that Requip or Mirapex (currently the drugs of choice for daily RLS) be used instead.

Sent: Monday, September 18, 2006 8:16 AM
Subject: RLS Questions

I have had RLS since my early 20s. I had occasional symptoms over the years but discovered the ibuprofen did a pretty good job of remedy. I didn't know what it was until Oct. 2004 when I was diagnosed with RLS during an overnight sleep test. My wife knew I had something but has always thought it was a subconscious effort on my part to stay awake since I would begin moving a leg at regular intervals about the time when she thought I was beginning to enter deep sleep.

I have a long history of PTSD and insomnia going back to my combat time in Vietnam. RLS was so significant during the test that I never entered deep sleep the entire night though I thought I had a pretty good night's rest. I began therapy with .0125 Mirapex which was very successful but I have had to increase dosage up to .05 mg at which time I changed to 2 mg of Requip before bedtime supplemented during the day with .125 - .5 mg Mirapex if symptoms returned during the day and anytime when I am driving for any length of time.

I have since discovered that Paxil can exacerbate RLS because of a positive correlation between Paxil dosage and RLS symptoms in my case. About 6 weeks ago I began phasing out of .375 mg. Paxil CR daily and stopped taking it altogether this past week, Sept. 13. RLS seems to be abating but now the anxiety and depression for which I have been taking Paxil are returning.

Tests have shown there is no problem with iron deficiency, arthritis, or any of the other known most likely causes. I have 3 relatives out of about 40 who have RLS-like symptoms with only one of the 3 having RLS for certain. I have cancers of the colon and liver (diagnosed Nov. 2004) with both having been treated with surgery and chemotherapy. In Vietnam I was exposed to Agent Orange.

My questions are:

1. What would you suggest as a possible replacement for Paxil and at what beginning dosage? I will show your response to my GP for his consideration.
2. Given my history, is it "more likely than not" that acute or subacute peripheral neuropathy as a result of toxin exposure 40 years ago might be the underlying cause of RLS in my case? I have numbness in both my hands and feet. Obviously, there is a specific and fairly transparent reason for this question.

Tom S.

A Medical Reply

First of all, the symptoms that you are describing while you are asleep or during your sleep study can only be PLMS. RLS is an awake problem with strange sensations in your legs, urge to move, etc. You may have both these problems (which is very common) but you have not described any of the awake symptoms in your email.

PLMS or RLS are generally treated with either Mirapex or Requip but rarely do I prescribe them both at the same time.

Paxil does worsen RLS as you have noted. Wellbutrin (start at 150 of the XL and can be increased to 450 or more mg) is often a good replacement and does not worsen RLS/PLMS.

Even with standard tests showing no iron deficiency this can often be better demonstrated by a more sensitive serum ferritin level (we want a level greater than 50 not the usual accepted 10-20).

Although there may be a link between peripheral neuropathy and RLS (some increase in cases of RLS in these patients) this link is not understood and it would be impossible to link your RLS/PLMS to agent orange or any other known toxin as the cause of RLS/PLMS is still way up in the air.

Sent: Tuesday, September 19, 2006 11:14 AM
Subject: RLS

Is RLS a secondary symptom of Parkinson disease? Is RLS a form of neuropathy disease?

Judy Y.

A Medical Reply

RLS is not related at all to Parkinson's disease (they just share a few drugs that help in common). We believe that it is a neurological disease but still do not know the cause.

Sent: Thursday, September 21, 2006 1:27 PM
Subject: RLS worse with a full bladder and Zoloft?

I have had RLS for the past several years. I have the uncontrollable desire to move my legs every night. I have been on Requip .75 mg and now it seems that it has lost it's effectiveness.

I have also noticed that along with the urge to move my legs, I get the feeling of a having a full bladder, even when I know it's not. This seems to add to my feeling of discomfort. Have you heard of this symptom before as part of RLS? When I have mentioned it to the Dr's along with describing the need to move my legs, they look at me like I am nuts!

I head back to the Neurologist tomorrow and reading your letters have given me a lot of good information.

I have also been on Zoloft (50 mg) for about 5 years. Should I go off of this since you have mentioned it may make RLS worse?

JAM

A Medical Reply

Many RLS patients have noted that their symptoms may worsen with a full bladder (or other types of physical stress). However, your feeling of bladder fullness with the RLS symptoms is somewhat unusual. A minority of patients do get strange RLS sensations in odd places such as the genitals so your symptoms may not be that rare.

If the Zoloft is not treating a major depressive or anxiety problem it may be worth switching to Wellbutrin XL which can be as effective and does not worsen RLS.

I am not sure why the Requip is not working as well. It could be that you are developing some tolerance to the drug in which case increasing the dose may be helpful or changing to Mirapex is another alternative. There may be other factors worsening your RLS (such as taking an antihistamine or other drug that worsens RLS) that have decreased the ability of your current Requip dose to alleviate your symptoms.

Sent: Friday, September 22, 2006 3:03 PM
Subject: Slowly getting worse?

Some time ago you recommended Mirapex for my problem RLS. It works. Yes I have a few classic “instant sleepy” sessions but the relief is worth it. I do not have symptoms at night like most, but started in the evening. I started with .125 of Mirapex in the afternoon and another one later. All was well. Since then it has gotten worse and earlier, sometimes as early as 6 am when I arise. Now I use up to six .25s during the day, sometimes as often as one every ninety minutes to get it under control. Obviously the legs are getting used to the Mirapex and need more and more.

Should I think of switching to Requip or something else? Should I take a holiday from Mirapex? (killer)

I get the “economy size” Mirapex bottle now. I don’t want to keep adding more and more.

Don

A Medical Reply

It sounds as if you are getting augmentation from Mirapex. As you increase the dose of Mirapex, symptoms will likely gradually worsen. It is best to get off Mirapex. Substituting Requip may work but there is a reasonable chance that augmentation may also occur with this drug.

It is probably best if you change to a painkiller (a narcotic or Ultram) to control your RLS for now. You may be able to go back to low doses of Mirapex or Requip but they should then be combined with another RLS drug (such as one of the painkillers or Neurontin) in order to keep all the drugs at a low dose.

Sent: Friday, September 22, 2006 9:02 PM
Subject: Controlling daytime RLS?

My husband has been taking Requip 4 mg. before bedtime which helps his symptoms but also has symptoms during the day. Would an alternate drug or adding a drug be helpful?

Jan S.

A Medical Reply

It is very common to take an additional dose of Requip to control daytime RLS symptoms. Another drug should only be considered if the Requip causes side effects (such as sleepiness) that would preclude its daytime use.

Sent: Saturday, September 23, 2006 7:51 AM
Subject: sleep study/RLS

I am scheduled for a sleep study. I had one several years ago. I have been trying to read up on them. My issue is that I am scheduled for a night time study then they MSLT test all the next day.

From my understanding this day time study is for narcolepsy and patients with sleep apnea. I know that I do not have either of these for sure. With my RLS I can not imagine having to try to nap every couple of hours during the day for the study. I do not nap. I know that my RLS will kick in if I try to do this during the day.

I am thinking of telling them that I am more than willing to have the night time study but that I do not want to do the day time study.

Is there any other reason that I don't know of that I should do the day time study with my RLS?

Sandra A.

A Medical Reply

There is usually no good reason to do a night time sleep study (or actually any sleep study at all) for RLS as this is a daytime sensory problem. If the diagnosis is certain then the sleep study adds extremely little (if anything) to the diagnosis and the same with respect to treatment. I rarely, if ever order a sleep study for RLS unless I suspect concomitant sleep apnea or some other superimposed sleep problem.

Just have your daytime RLS symptoms treated with Mirapex or Requip and forget about any sleep study unless you are still tired or excessive sleepy during the daytime.

Sent: Saturday, September 23, 2006 6:15 PM
Subject: Full Moon and RLS?

I, too, am very influenced by the full moon. During this time each month (even if I'm not aware that it's full moon time, for example during rainy periods), my legs move and kick relentlessly and my whole body becomes one big moving organism. Lack of sleep during full moon time has been going on for at least 25 years for me. When I asked my doctor about this, his only reply was, "Do you also howl?"

Well, now I do because the restless legs have gotten out of control. I'm just waiting for the results of my sleep study to find out what magic bullet will help me. I do know that my low ferritin level will likely require iron therapy, but other than that I have no idea what will be prescribed. Truthfully, as some others have stated, I am very much on the edge because I have no memory and am exhausted most of the time.

A Medical Reply

Requip or Mirapex are the drugs of choice for your problem. They should be able to take care of you and make your life normal again, even with a full moon.

Sent: Sunday, September 24, 2006 3:39 PM
Subject: Sleepiness with Requip?

I was put on Requip about a month ago. I started at 25 mg and noticed, right away, that I felt very tired and sleepy. (I was advised to take the Requip about 2 hours before bedtime.) I then moved up to .5 and then took one 1 mg. pill. Immediately when I took it, I became extremely exhausted. It was incredible; you could almost watch the exhaustion take over. I could barely climb the stairs to go to bed. This was part of a 10-pill trial.

I told my internist that I didn't like the exhaustion that came on me so quickly and asked him if I could take only .25. He said it was ok, but he thought it was a very low dose and I should perhaps take .50 mg.

I have been taking .25 mg for about a month. I am so tired all the time. I yawn constantly. Sometimes, I can barely keep my eyes open. I also have insomnia, big time.
I took myself off the Requip. My restless legs are not horrendous, but interfere with my sleep. When I went on the Internet, I did find that a side effect (but a more rare one) was this instant exhaustion. Can you tell me what you know about this.

A Medical Reply

Sleepiness and fatigue do occur with Requip but generally do not onset as quickly as they do in you. If your RLS is keeping you from sleeping then perhaps a better choice may be a painkiller taken about 20-30 minutes before bedtime.

A  Reply

Sent: Monday, September 25, 2006 1:54 PM
Subject: Pain with Requip?

This may sound "off the wall" but can Requip possibly cause constant pain-ache at the base of the head and in the upper arms. It doesn't sound as if it would be responsible for this, but the neck pain began at about the same time I began using Requip. I did not suspect Requip but called my doctor wondering if polymyalgia had returned. He said he thought it was arthritis (which I have) but taking an aspirin every four hours or so did not dull the pain.

I discontinued Requip a few days ago because of the total exhaustion I experienced every day. The pain at the back of my head is much better and I notice no pain in my upper arms.

What do you think? I am very sensitive to meds and just wonder if Requip is the culprit.

A Medical Reply

Although that is not a known side effect of Requip, anything is possible. The only way to be sure would be to take the Requip again and see if the ache returns. If it does, then perhaps changing to Mirapex might be helpful.

Sent: Monday, September 25, 2006 3:53 AM
Subject: Wheat allergy and RLS

Has there been any research on wheat allergy as a possible cause for RLS?

Vera P.

A Medical Reply

None so far.

Sent: Monday, September 25, 2006 5:18 AM
Subject: RLS caused by Alzheimer's medications?

I had restless sleep syndrome for about a year when I finally realized that it was caused by medication I was taking. I stopped all medication and slowly went back to only medication that I needed. I was on too many medications: Aricept and Namenda.

I was having short term memory problems and was put on two of the current Alzheimer drugs. The local neurologist had completed studies in the latest Alzheimer medication and he felt it would help my short term memory. The two medications combined caused RLS. He refused to treat me with testosterone.

I, not the neurologist, ceased both medications and then asked my primary care to put me on testosterone and my short term memory problems completely disappeared. I am a healthy 61.8 year old male and think many RLS patients are taking medication that causes it and not because they other neurological problems. When you look at the statistics for dementia and Alzheimer and RLS you will find that there are more than twice as many RLS patients than either the dementia or Alzheimer patients.

I am personally convinced that most of the RLS comes from conflict in medication and taking a patient off from all medication for a 7 day period will stop a lot of the RLS syndromes and then the issue is to try and see which medication cause it.

Michael V. F.

A Medical Reply

Although RLS can be made worse by many different medications (interestingly enough, Aricept and Namenda are not on that list), they do not generally cause RLS. In people who are not susceptible to RLS problems, taking all the RLS worsening medication at the same time does not cause RLS problems.

It is strange that the RLS symptoms seemed to have come and gone with these medications but stranger things have occurred.

Sent: Monday, September 25, 2006 8:58 AM
Subject: FW: restless legs - HRT and RLS

I first had an incident of restless legs when I was 23 and pregnant for the first time. I had occasional episodes of RLS during and after my next 2 pregnancies. After that I did not have symptoms until I stopped HRT (for menopause symptoms) when I was 59. Since then I have gone back on HRT in an attempt to relieve menopause symptoms. Each time that I discontinue HRT the restless legs come back - usually on a nightly basis. I would like to discontinue HRT but it works so well to control restless legs that I hate to.

Do other women experience similar rls in conjunction with hormones also? Are studies being done to look at the affect of hormones on rls? Does anyone have any suggestions on ways to deal with this?

Sylvia B.

A Medical Reply

Many women have found a link between hormones and RLS. About 20-30% of women experience RLS symptoms with pregnancy (usually maximum in the third trimester) and whether this is due to iron depletion or hormones has yet to be determined.

However, many women also notice fluctuations around their menstrual period and with stopping or starting hormones (strangely, it can to both ways). Unless you are at risk for cardiovascular disease otherwise, it may be prudent to stay on your HRT which may also prevent osteoporosis. There are no current studies about RLS and hormones being conducted as far as I know.

Sent: Tuesday, September 26, 2006 9:15 AM
Subject: Help with medication?

I have been suffering with the classic symptoms of RLS for about 20 years now. When I first began noticing the symptoms I thought it was fatigue or maybe a pinched nerve and although it was a discomfort I managed to get a full nights sleep. I am now 67 years old and the RLS has progressed to the point that my arms, face and head are affected. I beat on my legs, my head. I stretch, walk, take hot baths, cold baths. I've tried everything from acupuncture to magnets and been to numerous doctors.

For the last 7-8 years I have been taking Mirapex. Currently 1 mg at about 5:30 PM. Unless I take the medication prior to the onset of severe symptoms the medication does no good. I average about 3 hours of sleep per night and that isn't continuous.

I have been worried about augmentation because the symptoms are pretty much all day long now as opposed to a few years ago when it was just the evenings. Several months ago the Mirapex began to loose it's effectiveness. My doctor recommended that I take Valium at bedtime along with the Mirapex. This was disastrous. I still had to get up and walk but now I was so drowsy that I couldn't control myself. At 3:00 am. my wife was holding me up helping me walk up and down the driveway.

I have tried twice to switch to Requip with no luck. The last time was a few months ago. My doctor had me slowly decrease the dosage of Mirapex while slowly increasing the Requip. I managed to get up to 3mg of Requip and totally off Mirapex but I was going crazy. I am now back on 1mg of Mirapex. It does seem that the Mirapex is working better since I was off if it for a week or so (It took several weeks of low dosages to totally quit). If the Mirapex again begins to loose it's effectiveness is there anything you recommend other than Valium?

There is another matter that is a little concerning to me. When I do try to sit and relax I immediately ( within minutes ) go to sleep. I have been told that I began snoring while having a conversation with someone.( in mid sentence ) or that I have fallen asleep while changing the channel on my TV remote. TV is now scanning through channels and I'm snoring away. The only problem is that the sleep only last an average of 5-10 minutes. Every once in a while I will get a 30 minute nap on the couch before having to get up and walk. I'm not sure if the inability to stay awake when I first sit is due to a lack of sleep or if that is a neurological problem.

W.R.
Dallas, TX

A Medical Reply

Your excessive daytime sleepiness is most likely from the lack of nighttime sleep (3 hours clearly is not enough) but you may also have sleep apnea. A sleep study would help sort out this issue.

You need to add either a painkiller (a narcotic or tramadol) or gabapentin (or other anti-seizure drug) to your regimen. My choice would be a painkiller but either may work.

When stopping Mirapex, a potent narcotic is usually necessary to take care of the withdrawal problems/worsening RLS. You may want to get off the Mirapex (using a potent narcotic instead) for a month or so then restarting the Mirapex at a lower dose may be effective. You may still need to continue with an additional medication (painkiller or anti-seizure) to supplement the Mirapex.

The above advice should solve your problems.

Sent: Tuesday, September 26, 2006 5:21 PM
Subject: Insomnia with RLS or Requip?

I've had RLS for many, many years. In the past doctors wouldn't or couldn't prescribe anything for this so over the years I lived with it and developed a severe sleep problem. My RLS is worse at night. Recently my doctor prescribed Requip and wonder of wonders it worked. The past few months have been the most calm I've been in bed for many, many years. My quality of sleep is much better.

I also take Zoloft for depression. I cannot take Wellbutrin due to a seizure disorder. I haven't had a seizure for 20 years but I am very careful. He prescribed Ambien CR that I take sometimes when I know sleep will be difficult. I don't like taking Ambien all the time. I may be sleep walking when I take it. I'm not sure but I think I ramble around shortly and get back into bed. I don't believe I do this with Requip alone.

Most of the time Requip by itself seems to help me go to sleep and calm my legs. Sometimes I wake up wide awake in a few hours and can't get back to sleep. It is usually way too late to take a sleeping pill. I wouldn't be able to go to work. Can I take any additional Requip? I have found that if I break a pill and take only a tiny portion of it I go back to sleep and sleep fairly comfortably. I don't always need it, just occasionally.

I also want to know if Requip causes me to retain fluid? My feet and legs are somewhat swollen. This is something new for me. As a woman I don't want to look fat. I know I'm vain. If it isn't caused by Requip I need to find out why I'm retaining fluid.

As a long time sufferer the quality of my life has changed. I have not reached the point when I can sleep in bed with my husband yet. Perhaps I can achieve a level of sleep when this would be possible.

A Medical Reply

If it is simple insomnia, then you should not take more Requip but might want to consider Sonata, a very short acting sleeping pill (half-life of one hour) that can be taken at 3 am and still let you wake up and go to work without problems. If the problem is RLS, then either taking some extra Requip when this happens or just increasing the dose before bedtime would resolve the issue.

Some people do retain water with Requip. Simply cut down the amount of salt and water you intake and that may help reduce this problem.

Sent: Thursday, September 28, 2006 6:40 PM
Subject: PLMD

My daughter, just turned 4, has been diagnosed with PLMD and accompanying partial arousal disorder. She averaged 16 movements/hour and 15 arousals/hour in her sleep study. She has fine iron levels, but a low ferritin level (14). She's been taking 320mg ferrous sulfate for 2 months. It has helped some, but she still wakes screaming every night and it appears she gets up and plays during the night as well.

We have just been advised to start her on Neurontin. In your experience, would this be the next course of action for such a young child? I've read some disturbing news about Neurontin, side effects and a lack of clinical trials.

I would greatly appreciate your insight and what course of action is most common for a young child with this condition.

Michael R.

A Medical Reply

It is difficult enough to advise on how to treat RLS in a 4 year old (as there are also very few studies, but at least we have a lot of clinical experience treating it) let alone advising about treating PLMD in this age group. One of the problems is that PLMD is not very well defined and many sleep specialists do not believe that it even exists. Although the PLMS can be found on a sleep study (which is what I am assuming that your daughter had to diagnose her problem), a real disorder occurring from these leg kicks is not uniformly accepted. It has yet to be proven that these leg kicks cause real problems such as next day sleepiness or fatigue, even when they occur more frequently than with your daughter.

You have to be sure that the PLMS really cause her wakening and prevent her from falling back to sleep and obtaining adequate sleep before venturing on to treating this problem.

As far as treatment, the major guidelines we have are for treating RLS. Klonopin has been used a lot in children but it is a potentially addictive medication that has a long half-life that may result in next day sleepiness (you don't want to make the treatment worse than the problem). However, although it does not decrease the amount of PLMS, it does decrease the arousals from them. Other shorter acting benzodiazepines may also be considered, but I do not know how safe they are in children.

Clonidine (a blood pressure bill) has also been used in RLS in children but I am not sure of how successful this would be for PLMS.

Although studies are just being conducted, many believe the dopamine drugs are best for both RLS and PLMS, even in children. Levodopa (in the form of cabidopa/levodopa or Sinemet) has been used a lot in kids but most of us think that Mirapex or Requip are better choices (but just case reports for now, still waiting for real studies which take forever to be done in kids).

Neurontin is a second-line drug for RLS and PLMS but it can be effective in selected patients. Next day sleepiness (at the doses that tend to be effective) tends to be a problem in many. However, it is approved for pediatric use (ages 3 and over) for epilepsy so it has been studied in children (unlike the dopamine drugs).

So, what it the bottom line? I would be very cautious treating the PLMS in the first place. If you and your doctors feel that treatment is really necessary, then Neurontin is a reasonable choice. If that does not help or causes side effects, then the dopamine agonists (Mirapex and Requip) should be considered. Lastly, you may consider adding or substituting a benzodiazepine pill (to help sleep and avoid arousals from PLMS) if necessary.

A Reply from Michael R.

Sent: Friday, September 29, 2006 12:09 PM
Subject: Re: PLMD

Thank you for your information on PLMD in my 4 year old. To add to this, she has been waking screaming every single night since she was an infant. Her sleep is definitely being affected. She almost appears terrorized when we go to comfort her. Until five days ago, she absolutely refused to sleep alone.
Sleeping with us, she would wake screaming/crying several times a night, and thrash a lot throughout the night.

She also had a mediastinal/paraspinal tumor removed when she was 2 months old. I mention this because perhaps there is a relationship here with the spinal nerves affected by the surgery. No one will say this, but we can't help suspecting it. Have you heard this before?

She has asked me to put bug spray on her legs at night recently (about four times and then not again) because she said the bugs are crawling on her legs when she sleeps. So, the doctor said the Neurontin would help if there is pain in her legs.

We do not have any daytime symptoms. I suspect this is why it's not being diagnosed as RLS, but PLMD. But the fact that it is greatly interfering in her sleep (and ours) is why treatment is being pursued.

Would you share what is being seen that leads to the thinking that Mirapex or Requip are better than Levodopa?

Michael R.

A Medical Reply

The concern with your daughter's case is that the PLMS may still not be the cause of her awakening with screaming and crying. Those episodes sound much more like night terrors (that occur in stage 3 and 4 deep sleep) and are not uncommon in children her age. These night terror episodes may have no relationship with the leg kicking (unless one of the leg kicks is seen on an overnight sleep test to lead to the awakening with screaming, which I suspect may be tough to find).

We have no data to help us understand whether the tumor that was removed could have been responsible for her current problems but our current theory is that they have a central (brain) origin and thus the spine should not be able to generate these problems.

The bugs crawling in her legs sound very much like RLS (which occurs mostly at night) and if they prevent her from sleeping would be an additional (and very strong) reason to treat her PLMS (as most drugs that treat one problem take care of the other).

Sinemet (levodopa/carbidopa) helps RLS at first but then causes worsening of the problem in most adults (we do not have enough data to extrapolate yet to children). Most of us believe that Mirapex and Requip are better drugs that last longer, are smoother acting and have less side effects than Sinemet.

It may be helpful to get your daughter to a RLS pediatric specialist who understands how to diagnose and treat these issues in children (which as you can appreciate are much more complicated than in adults).

Sent: Thursday, September 28, 2006 11:52 PM
Subject: Can Requip be taken twice a day??

I was diagnosed with RLS about a year ago. I have had the symptoms for much longer. I experience the symptoms at all times of the day and night. I am currently taking 1mg of Requip at bed time and that doesn't last much past my 5-8 hours of sleep. I spoke with my doctor and he has me taking 2mg's daily. This helps some but it still doesn't last for the full 24 hours daily. My question is can I safely take 1mg twice a day or must the full 2mg dose be taken at once?

Bob A.

A Medical Reply

When treating RLS that is 24/7, most specialists will prescribe Requip every 8 hours as that seems to be the duration that it lasts (as you have already noticed). Some may get by with 2 doses a day while others may even need 4. It is much better to split up the doses rather than take a bigger dose at once.

Often, smaller doses are adequate earlier in the day when RLS symptoms tend to be less severe and you can easily walk or be active to treat them.

Sent: Friday, September 29, 2006 10:07 AM
Subject: Neurontin fro RLS?

I was on Sinemet for familial RLS for many years, and switched to ½ half .125 Mirapex last year with good results. I later doubled the dose but split it with 2/3 late afternoon and 1/3 at bedtime. Again with good improvements. I had an appointment with a sleep specialist 2 weeks ago because I was having some problems with evening sensations in my arms and other evenings when the Mirapex just didn’t work at all, although this is only occasionally. He put me on a low dose of Neurontin (100 mg) and suggested I increase to 300 mg if it didn’t help. In fact I am not noticing that 100mg helps although I would still say my RLS is still basically under control with some bearable symptoms as mentioned.

Should I increase the dosage of Neurontin or stop it altogether. I am noticing some drowsiness, and often my face feels very hot. As an aside I also suffer from anxiety and a panic disorder, and that seems to be more of a problem now, which may have no relevance but I thought I would mention it anyway.

Anyways, I am just looking for advice on use my use of Neurontin.

Allen T.

A Medical Reply

Neurontin is a reasonable choice for treating RLS but very often, side effects (such as the drowsiness problem that you have already noticed) tend to limit the use of this drug. When used alone, doses of 600-1200 mg are usually necessary (and few are spared of the drowsiness side effect). Sometimes, much lower doses (usually above 300 mg) will help when combined with a drug like Mirapex, but as you are already reporting side effects with the tiny dose of 100 mg, it is most likely that this is not the best drug for your RLS.

Your total dose of Mirapex is still very low so I would have no hesitation to suggest discussing a small increase in this drug with your doctor.

Increased anxiety does tend to worsen RLS so decreasing it will also decrease the RLS symptoms.

Sent: Saturday, September 30, 2006 3:00 PM
Subject: RLS, Impending Surgery/Cast, and Nerve Block?

I am a 56 year old male and have had RLS for decades (seems to be worse the past 3-4 years though). I am currently taking both Requip and Neurontin starting at noon, 3 times a day as my RLS symptoms affect my ability to sit in my office working during the day, plus the typical night-time symptoms. The medications help a little but have not solved the problem. I currently take 3 mg Requip plus 300 mg Neurontin each 3 times a day.

My bigger problem is that I have been told I need surgery on my left ankle to repair tendon damage and I’ll need to be in a hard cast for 3-6 weeks. I can’t stand the thought of having a cast on with my RLS problem. I’ve put off the surgery for almost 2 years now just because I couldn’t put up with the cast on my leg. Is there anything temporary that could be done such as a nerve block or something else that could numb my legs and alleviate the RLS feelings/urges while the cast is on? I’ve asked about a removable boot type cast but have been told that that wouldn’t be immobilizing enough at least for the first 3-4 weeks.

Any suggestions assuming I couldn’t find anyone to put me in a coma for 6 weeks? (only kidding……….mostly).

A Medical Reply

There is an easy solution. Just add painkillers (narcotics or Ultram) for the 3-4 weeks of immobilization. That should easily take care of your increased RLS symptoms. You will be on them anyways for post-operative pain for at least a week or so.

Nerve blocks or otherwise numbing your legs would not help as the RLS symptoms are generated in the brain and you would still have problems (similar to the phantom limb problem). You really do need the numb the brain to numb the RLS symptoms.

Sent: Monday, October 02, 2006 5:27 AM
Subject: Easily startled

I am 72 years old, an RLS patient for over 30 years and I am easily startled. It seems the older I get the more it bothers me. Sometimes it feels like an electric shock going through me and for a second I'd swear my heart stops. Does this become more intense with age, or does it have something to do with RLS or the Mirapex that I take?

Many members of my support group are experiencing the same thing. We would appreciate any light you could shed on this subject.

Thank you,
Vera P.

A Medical Reply

It is much more likely that your problem with being easily started has much more to do with getting older rather than RLS or medication. There is no known link between this startle response and either RLS or Mirapex.

Sent: Tuesday, October 03, 2006 9:13 AM
Subject: Requip & Mirapex Question

It seems to me that I heard long ago that either Requip or Mirapex can cause people who have a gambling addiction or like addictions to become worse. Can you tell me if that is true? And if so, which drug?

L. R.

A Medical Reply

Both drugs have been associated with this problem, however mostly at the much higher doses used for Parkinson's disease. A few cases have occurred in RLS patients but for the most part, this is a very unusual concern in this group.

Sent: Tuesday, October 03, 2006 6:02 PM
Subject: Periods of remission?

I have suffered with RLS for many years, maybe 15 or 16. I am a 63 year old female. It started in my legs and my arms. The legs would start in as I would sit down after dinner and the arms would start bothering me as I tried to get to sleep. For several months I got by on 3-4 hours of sleep a night. Then as quickly as it came, it went away. I wasn't bothered for many years then about 6 years ago it started coming back. Just a little at night when I sat down at the end of the day to watch a little TV. I would get up and walk around and it would stop until I sat down again.

I was taking Vicodin at the time for another problem and I noticed that when I took it at bedtime the legs would settle down also. Then about 18 months ago it started getting worse and was everyday without fail. The Vicodin did not help and after many sleepless nights I went to see a Neurologist and he put me on Mirapex. One as soon as the symptoms start seems to do the trick for me so far. I have not had a reoccurrence in the arms (thankfully as that was worse than the legs).

Does RLS come and go like this? Might I anticipate it going away again? Both times that I have had really severe occurrences (as now ) I have been under terrible stress (terminally ill son and now husband). Has stress been linked to RLS as well?

Chloe S.

A Medical Reply

Most RLS patients do notice waxing and waning of symptoms although a smaller subset will have marked variations such as yours with years of no trouble followed by years of worsening. It is quite likely that you may have a remission of symptoms again, but as one gets older the odds are better that the RLS will stay and may get slowly worse. Again, RLS can be very unpredictable, so no one can say for sure what will happen to you.

Stress is one of the well known triggers for RLS so it is no surprise that your recent problems have taken its toll on your disease.

The good news is that we have great treatment to relieve your symptoms no matter what which way your RLS course goes.

Sent: Tuesday, October 03, 2006 6:18 PM
Subject: Mirapex problems?

I was changed from Mirapex to Requip in the last few days. I stopped Mirapex abruptly and went directly onto Requip. My restless legs got worse. I felt dizzy and strange. Cold and nauseous. Had big vomiting spell last night with chills. Had to use the heating blanket. Now I read that other people have had withdrawal symptoms from Mirapex.

Are these symptoms like ones that others have had? My doctor did not ask me to keep in touch regarding the change. Am better today but still nauseous. Not hungry, still cold and am drinking Gatorade to renew my electrolytes.

Jackie in Maryland

A Reply from Jackie

This is very difficult to say as I do not know the doses of Mirapex and Requip. It could be that you are having withdrawal problems but if the correct dose of Requip was substituted for Mirapex, no symptoms should occur as they both work on the same dopamine receptors. Another possibility is that you were given too much Requip and are having side effects from that drug (which can cause most of what you are describing).

A Medical Reply

Sent: Wednesday, October 04, 2006 8:37 PM
Subject: Re: Mirapex Problems?

thank you for your response. I was taking 1.5 mg. Mirapex and stopped abruptly. Started on Requip 2 mg. Got very sick. Didn't know Mirapex had withdrawal symptoms. And so didn't know whether problem was Mirapex or Requip. Am little better now. Am now taking Requip 4 mg. Problem for going off Mirapex was hypotension 80/30.

Jackie in Maryland

A Medical Reply

Mirapex at 1.5 is equal to 3-6 mg of Requip so you may have been somewhat under-dosed before. The Requip at 4 mg sound more reasonable.

Sent: Friday, October 06, 2006 8:26 AM
Subject: Naltrexone for RLS?

I have recently learned of a medication “Low Dose Naltrexone” which many MS sufferers are starting to use. It has been helping people with autoimmune diseases. Specifically mentioned were Fibromyalgia, Chronic Fatigue Syndrome, Crohn's Disease, Irritable Bowel Disease, etc. It doesn’t cure disease, but stops the progression and helps the symptoms such as pain, etc.

I would like to try it for my Fibromyalgia and Chronic Fatigue, but don’t want to have a negative reaction with my RLS. Can you tell me if this drug is on the no no list?

Jan F.

A Medical Reply

Naltrexone is on the "bad list" for RLS patients. It is similar to naloxone and is an antagonist at the mu opioid receptor (the pain receptor that narcotics act upon). As the opioids help RLS, medications that antagonize this receptor may worsen RLS. Patients who use opioids for their RLS should be especially wary of this drug.

Sent: Monday, October 09, 2006 1:29 AM
Subject: Pain Medication

My doctor suggested that I try Ultram instead of Vicodin. Pain medication definitely works but it is hard to get enough medication if you have a severe case. The Ultram works great if I take 2 - 50 mg pills. It works better than anything I have tried previously. I have tried Sinemet, Mirapex and Neurontin. The Neurontin worked great, but after 2 years it wasn't effective anymore. I was taking 1200 mg at bedtime.

The problem I am having is that the doctor only wants me to take 50 mg of Ultram and it is not enough. If I take 2 pills I will run out and that scares me. I have some Vicodin and I tried taking 1/2 of a 500 mg Vicodin with the 50 mg of Ultram and it worked great. Is it safe to take the two medications together? I take 1/2 of Vicodin early in the evening just to get by without suffering too much (although I still can't sit down and even eat dinner). I need to save the medication for later so I can try and get some sleep. I also take 1/2 of a 0.5 mg of Xanax. I feel like I could use more of it to help with sleep. What do you think?

Also I was wondering if the Neurontin might work again since I have been off of it 2 years?  I have RLS in my arms, legs and chest. I also have the feeling of having to urinate every 5 minutes, and then I can't go (it is very embarrassing if I have company). This goes on until my RLS gets better. Sometimes it takes 2 hours if I haven't taken medication and I have to wait for it to kick in. I literally feel like I am being tortured during that time.

If there was no medication to get some relief I really do not think I would want to live, it is that bad. It usually comes on between 6PM and 8PM every night (about 5 years ago it used to start between 9PM and 10PM. If I am exhausted in the daytime I can never lay down because my RLS will also start then. It is like I have to keep moving all the time. I really need to take medication around 6PM, 10PM and 2PM but the doctor does not want to give enough medication for this. Do you have any suggestions for me. My mother and father both had an extreme case of RLS, so I got it from both sides of my family.

Lynn

A Medical Reply

There is an easy answer to your questions. You can take Vicodin and Ultram together, but usually we like to stick to one drug, but take adequate doses of the drug. You clearly need more Ultram and your doctor should either prescribe the 2 Ultram together or stick with the Vicodin. (I do have some patients who take Ultram earlier in the day often due to less sedation then a narcotic in the evening.) For your severity of RLS, I prefer methadone as it does not contain the useless (for RLS) acetaminophen, and works much better.

If you took enough medication (Vicodin or methadone) before (this is essential) symptoms are occurring in the evening then perhaps again before bed you would likely be able to completely eliminate all your RLS symptoms and live a much happier life. There is no reason to be tortured every day when relief is available and very safe if used properly. I certainly do not settle for any less with my patients nor should you.

Sent: Monday, October 09, 2006 1:10 PM
Subject: Rozerem and Klonopin for RLS?

I have been taking Klonopin 1mg nightly for 2 months. it really helps my restless legs. I don't have hangover in morning. I have been taking Rozerem for a week now and it is perfect for my sleep problem, which Klonopin does not help. Since Rozerem works on melatonin receptors and not on the benzodiazepine receptors, is it safe to combine Klonopin and Rozerem at night about 2 hours apart?

Joan R.

A Medical Reply

That would be very reasonable and should not cause any problems.

Sent: Monday, October 09, 2006 1:29 AM
Subject: Pain Medication

My doctor suggested that I try Ultram instead of Vicodin. Pain medication definitely works but it is hard to get enough medication if you have a severe case. The Ultram works great if I take 2 - 50 mg pills. It works better than anything I have tried previously. I have tried Sinemet, Mirapex and Neurontin. The Neurontin worked great, but after 2 years it wasn't effective anymore. I was taking 1200 mg at bedtime.

The problem I am having is that the doctor only wants me to take 50 mg of Ultram and it is not enough. If I take 2 pills I will run out and that scares me. I have some Vicodin and I tried taking 1/2 of a 500 mg Vicodin with the 50 mg of Ultram and it worked great. Is it safe to take the two medications together? I take 1/2 of Vicodin early in the evening just to get by without suffering too much (although I still can't sit down and even eat dinner). I need to save the medication for later so I can try and get some sleep. I also take 1/2 of a 0.05 mg of Xanax. I feel like I could use more of it to help with sleep. What do you think?

Also I was wondering if the Neurontin might work again since I have been off of it 2 years? I have RLS in my arms, legs and chest. I also have the feeling of having to urinate every 5 minutes, and then I can't go (it is very embarrassing if I have company). This goes on until my RLS gets better. Sometimes it takes 2 hours if I haven't taken medication and I have to wait for it to kick in. I literally feel like I am being tortured during that time.

If there was no medication to get some relief I really do not think I would want to live, it is that bad. It usually comes on between 6PM and 8PM every night (about 5 years ago it used to start between 9 PM and 10 PM. If I am exhausted in the daytime I can never lay down because my RLS will also start then. It is like I have to keep moving all the time.

I really need to take medication around 6PM, 10PM and 2PM but the doctor does not want to give enough medication for this. Do you have any suggestions for me. My mother and father both had an extreme case of RLS, so I got it from both sides of my family.

Lynn

A Medical Reply

There is an easy answer to your questions. You can take Vicodin and Ultram together, but usually we like to stick to one drug, but take adequate doses of the drug. You clearly need more Ultram and your doctor should either prescribe the 2 Ultram tablets taken together or stick with the Vicodin. (I do have some patients who take Ultram earlier in the day often due to less sedation then a narcotic in the evening.) For your severity of RLS, I prefer methadone as it does not contain the useless (for RLS) acetaminophen, and works much better.

If you took enough medication (Vicodin or methadone) before (this is essential) symptoms are occurring in the evening then perhaps again before bed you would likely be able to completely eliminate all your RLS symptoms and live a much happier life. There is no reason to be tortured every day when relief is available and very safe if used properly. I certainly do not settle for any less with my patients nor should you.

Sent: Monday, October 09, 2006 1:10 PM
Subject: Rozerem

I have been taking Klonopin 1mg nightly for 2 months. it really helps my restless legs. I don't have hangover in morning. I have been taking Rozerem for a week now and it is perfect for my sleep problem, which Klonopin does not help. Since Rozerem works on melatonin receptors, not on the benzodiazepine receptors, is it safe to combine Klonopin and Rozerem at night about 2 hours apart?

Joan R.

A Medical Reply.

That would be very reasonable and should not cause any problems.

A Reply from Joan R.

Sent: Thursday, October 12, 2006 10:53 AM
Subject: Rozerem

I currently take 1mg Klonopin for RLS and 15mg of Ambien for sleep. combo works well/what's your opinion a new drug Rozerem.  It is new extremely expense .you think its ant better then Ambien working thru melatonin receptors. I'm a little leery about new medications?

Joan R.

A Medical Reply

Rozerem is a very safe drug. It works on the melatonin receptors to naturally synchronize the body's natural sleep rhythms. It works for some, but not all.

Klonopin is not an RLS drug. All it does is aid sleep. There is overlap with Ambien which is why we generally do not like patients taking both of those drugs together.

Sent: Tuesday, October 10, 2006 6:31 PM
Subject: RLS - absolute torture

I've got the "jimmy legs" as Kramer calls them (Seinfeld). Of course, its RLS, and I'm on all kinds of sleep medicine (Ambien, Lunesta, Xanax, Flexeril). I just keep rotating between them to keep the effectiveness intact.

I have a question, though. My main concern is that of addiction, and/or damage to my liver or other organs with long-term use of prescription drugs. What is your opinion of wine, or other depressant types of alcohol consumed in reasonable amounts, strictly for medicinal purposes. Currently I consume absolutely no alcohol, but have read that there has been some unqualified success with drinking a glass of wine before bed.

I should also mention that I have episodes every night. RLS is the devil!!

SRN, 50 years old, very active male, good shape.
Indiana

A Medical Reply

The big problem with alcohol is that it tends to worsen RLS which may then be a problem if you don't fall asleep right away. Alcohol also worsens the second half of your night's sleep. Often there are more arousals and awakenings that may also present problems.

Requip and Mirapex are currently the drugs of choice for RLS and unless you have had problems with them, you should ask you doctor for one of these drugs. That should take care of your RLS problems. You will then not need alcohol and can cut down on your medications.

The medications that you have listed do not tend to cause any organ damage with long term use. Xanax may cause dependence and tolerance if used daily. Flexeril is not an RLS drug. It does have a side effect of sleepiness which may be why you find it helping you.

A Reply from SRN

Sent: Wednesday, October 11, 2006 6:31 AM
Subject: Re: RLS - absolute torture

For some reason, my MD is not moving toward Requip.  Are there long term negatives for Requip (liver, etc)?

SRN, 50 years old, very active male, good shape,
Indiana

A Medical Reply

Requip (and its cousin) Mirapex have both been available for about 10 years. We have seen no long term side effects from either drug and they are also used for Parkinson's disease at much higher doses (10-50 times the dose used for RLS). The reason that your doctor is not using Requip is most likely due to unfamiliarity with the drug. He should get educated about these drugs (especially since Requip has been FDA approved for RLS for a year and half and Mirapex will be approved any day now) as they are the drugs of choice for RLS and work great for this disorder.

Sent: Thursday, October 12, 2006 10:12 PM
Subject: RLS and sore legs from Requip?

I have restless legs at night esp. sometimes when on the airplane or tight area.  I am also on lisinopril. The doctor. had me try reequip and it really helped me sleep, but I felt that my legs got really tight and sore muscles after taking it for a month.  I decided to quit for a couple of night with the Requip, my legs are still sore but they do not seem to be as bad but I can not sleep. 

Do you think Requip could be any part of the stiff sore legs?  Maybe it is the lisinopril maybe it is the combination.  I also take magnesium?

Do you have any thoughts on this at all?

T.

A Medical Reply

It is very unusual for Requip to cause sore legs (but of course, anything is possible). The only way to tell if the Requip is responsible is to stop it (as you have already done) and see if the symptoms go away (it can take a few weeks) then restart the Requip and see if they come back. It may be coincidental that the leg pain occurred while on the drug so you must experiment to see if there is a link.

It is unlikely that lisinopril has anything to do with the leg soreness, especially if you had been on it for a while before this problem. There is no known interaction between lisinopril and Requip.

Sent: Monday, October 16, 2006 6:03 AM
Subject: My RLS story

First thanks in advance for taking the time and here is my story and contribution, I hope some day it might help to understand somebody in the same situation and prevent this disaster from happening. I'm 22 year old and have been diagnosed with RLS a few months a go, when that happened and started to make some research, I realized I have suffered RLS in its severe form since I was a little kid (3 years old). I remember feeling amazingly anxious and irritable most of the time, to the point of getting out from class in school to "take a walk", of course these was taken as misconduct (5 years old). I stared growing up and with time the symptoms worsened and my life started to shatter in peaces with no reason. apparently.

When I was 13 years old things started to get bizarre, I started to feel deeply disturbed, I eat my nails like a mad man till they hurt or bleed, and of course sleep started to interfere with my daily activities till I just miss school and went to rest any were I could, and once more from the outside it just looked like a problem child in need of some sort of therapy, and the worst of all is that I was convinced of it and felt guilty because of that reason. And so the "real" odyssey had begun, I started visiting many therapists and latter on several psychiatrists almost on a daily basis with only precarious results and empty handed. Several diagnoses fallowed with their proper medications: First came Hospitalization for severe depression (15 years old), lithium and other medications were given during that episode, maintained with Prozac till I just stop taking it (chronic tiredness remained as a constant), then again 6 month later the symptoms begun accompanied by a new diagnosis: Bipolar disorder, Tegretol came along with no result.

My illness receded for some time, and five different high schools later I managed to graduate from one of them. It was until here that my family's hostility towards me started to smooth a little bit, but I think it was too late. Later after taking a year of rest, I joined college to study economics with the naive illusion that my life was going to get better, but it didn't; tiredness started getting worst in parallel with my sleep, I started experiencing what today have become a compulsive disorder, and one semester later I abandoned university. I went with new psychiatrist ho diagnosed schizophrenia, and of course my new hope's name was Zyprexa.

I started working with my father thinking again that things would get better. but they didn't, I felt so restless and anxious inside that horrible box called office that I gained 40 lb, which later on when I stopped working, and with much effort, I managed to get back to normal weight again but not without leaving skin scratches all over my body. After that I went to Houston and bipolar disorder was erroneously diagnosed once again, but now with a full cocktail; and it really didn't help at all, so once again I stop taking the pills.

Then I spent some months soothing my self to prepare for my next attempt, it was later at these time that RLS was diagnosed by a neurologist, I was prescribed with clonazepam and Sinemet which gave me the first night of good sleep for years, I started studying again, philosophy this time, but just a month later I started to feel so tired, and my concentration and sleep were fairly less then normal, I started feeling sleepy all day long again.

Then chaos, I broke my foot running down the steers and it had to be immobilized, so I couldn't move it or stand up and walk, this triggered my symptoms to a level witch I just wish I couldn't remember, I used to cry all day from desperation, until one night it just happened: I went to the bathroom, got inside the hot tube and putted a heavy peace of furniture in my chest, I proceeded to swallow eleven clonazepam tablets with a pint of rum then I slowly filled the hot tube with cold water with me inside, subsequently I swallowed eleven clonazepam tablets with half a liter of rum. Two days later I woke up in the ER. room ready to take me to a mental illness hospital, and what did they do? More pills. These was a few months ago. I went to the neurologist again and he didn't even hear me, so I just stood up and left.

I have controlled the RLS by my self now, but what I'm most afraid of now is that I'm feeling all this years of physical, mental and specially emotional abuse from other people, and a compulsive disorder is starting to develop pretty strong.

What is making me cry in this exact moment is how brilliant I'm considered by the world that surrounds me, and how much love and wisdom I could sheer with all people, but I just can't. I feel like I'm half dead, every people I knew in the past have left me behind, and I don't get out of my house cause I have developed an enormous, and I'm sure, pretty rational fear of hurting my self in some kind of accident and not being able to move.

Sorry if my English isn't so well, I'm not from the States, I'm from Guatemala a third world country one block away from yours.

Cesar L.

A Medical Reply

Unfortunately, many of the medications that have been prescribed for your psychiatric conditions tend to worsen RLS. If you need them, then extra medication should be given for your RLS. Currently, the drugs of choice for RLS are Requip or Mirapex. They should be able to help you a lot and then you should tolerate other medications if they are necessary.

Sent: Thursday, October 19, 2006 9:03 AM
Subject: RLS & Adderall?

I have just recently started taking Adderall in place of Ritalin. I am on Requip. It SEEMS that my RLS has started going crazy since I started the Adderall.

Has there been any info on the RLS from Adderall that you know of?

Letty M.

A Medical Reply

Adderall and other stimulants (amphetamines and Ritalin) generally do not bother RLS and may even help it. They may cause the release of dopamine which should act like Requip. Ritalin (methylphenidate) is quite similar to the amphetamine like drugs (Adderall), so it is difficult to figure out why your RLS has worsened.

Sent: Saturday, October 21, 2006 8:47 PM
Subject: My good treatment for RLS.

I have RLS, when I feel it coming on I stand on that one leg bending the leg as I stand on it , I bend the leg until it is uncomfortable to stand then hold that position for 50 seconds 99% of the time this rids me of the restless leg for the night and I get a good sleep for that 1% of the time it doesn’t work

I just repeat the process and that always works, I take no medication as this self developed treatment allows me a good night sleep

If you try this could you E mail me as to how it worked for you.  If my instructions are lacking E me and I will elaborate.

Glen St G.,
Tig1@shaw.ca

A Medical Reply

Thanks for your letter. We will post it on our website for other RLS sufferers to read.

Sent: Monday, October 23, 2006 4:17 AM
Subject: RLS not doing well with medications?

I'm a 59 year old female who has had RLS for over 20 years. My doctor finally put me on Requip which helps immensely, but my RLS is now so bad during the day I find myself taking my Requip earlier, and earlier every day. And of course the Requip causes drowsiness so now I'm falling asleep during the afternoon and am up all night.

I also have now been diagnosed with Type II Diabetes. And that's when the RLS really got worse. I don't know the connection, and I'm not sure my doctor is managing things correctly. He just keeps giving me pill after pill after pill. Before being diagnosed with diabetes I was being treated for severe neuropathy and was taking Neurontin, and still am.

I am on 14 different pills a day and lack of sleep is the biggest problem I have. I sleep about 2 hours a night; if that. The sleep deprivation combined with the RLS which is a big cause of the sleep deprivation is making me severely depressed. I walk around in a daze most of the time. I now am on Social Security Benefits because I no longer can work.

If you have any suggestions, they would be greatly appreciated. I am looking into changing doctors.

Lori A. C.

A Medical Reply

It sounds as if you are experiencing augmentation from Requip (worsening of the RLS due to taking Requip). When the RLS keeps occurring earlier and earlier and gets more intense (and even settles in other body parts such as the arms) it is time to consider going off the Requip.

Neurontin is helpful for RLS but you may need a higher dose which often causes drowsiness (just like you have experienced with the Requip). It may be necessary to go on the painkillers (opioids or tramadol) which should take care of you RLS problems and let you sleep.

There may be a mild increase in RLS in diabetes. The reason for this link (if it is truly there) is not understood. It may be that the neuropathy associated with diabetes gets easily confused with RLS.

A Reply from Lori

Sent: Tuesday, October 24, 2006 3:42 AM
Subject: RLS not doing well with medications?

Thank you so much for your helpful insight. It was when the doctor upped the dosage of Requip that things started to get worse and I didn't even think about it until you brought it to my attention. I will call my doctor about the possibility of stopping the Requip. I will keep taking the Neurontin. It does help with the neuropathy.

Lori

A Medical Reply

Neurontin is a good neuropathy drug. Lyrica seems to work even better for neuropathy for many (less side effects).

A Reply from Lori

Sent: Thursday, October 26, 2006 2:15 PM
Subject: RLS not doing well with medications?

I am on Neurontin and Lyrica and Requip. I have been reading the side effects of Requip and was stunned to read that some of the side effects I have and didn't even know that they were probably coming from the drug Requip. The doctor and the pharmacist never told me that some of the side effects were halucinations, hearing sounds, swelling, sleeplessness. I thought I was going crazy because I had been hearing the phone ring every night (when actually it wasn't), my hands and feet swell so badly, and I have been suffering from chronic insomnia.

I've read not to stop taking the drug without first checking with the doctor, but what can I expect if he takes me off the Requip? And I do want off of it because the side effects are not worth it. I also did not know the drug is also used for Parkinson's disease. One of the side effects I have been having after taking the drug in the evening is involuntary body tremors and I wake up with soars in my mouth where I've bitten myself during sleep.

Is this drug really helpful? And has it been fully researched? And should it be taken with Neurontin and Lyrica?

Lori C.

A Medical Reply

Sleeplessness and sometimes swelling may occur at the lower doses of Requip (you did not say what dose you were on) used for RLS but hallucinations (auditory or visual) are extremely uncommon at those doses. If you stop the Requip suddenly, the only problem that will likely arise is a sudden worsening of your now untreated RLS symptoms. Otherwise, Requip is a very helpful drug (for RLS), however you may consider changing to Mirapex to see if you tolerate it better (it usually works as well as Requip).

Lyrica and Neurontin are rarely (if ever) used together as they do essentially the same thing.

Sent: Tuesday, October 24, 2006 9:43 AM
Subject: Mirapex not lasting long enough?

My RLS symptoms happen in the early hours of the morning; after about 5 hours of sleep. Thus, taking Mirapex before bed doesn't work, because it doesn't last long enough.

Any Suggestions?
Dean C.

A Medical Reply

Mirapex has a half-life of 8-12 hours which means that it should be able to take care of you RLS 5 hours later. The problem may be that you need a higher dose to relieve your early morning RLS.

Sent: Tuesday, October 24, 2006 11:52 AM
Subject: restless leg....help!!

I have had restless leg symptoms since I was a child, and they seem to be getting worse and worse. I recently had a sleep study that suggested muscle tightening similar to those who have RLS. I also have severe Fibromyalgia (18 out of 18 trigger pts diagnosed by my Rheumatologist), severe Endometriosis for 18 years, and severe bruxism, non-restorative REM was also found in the sleep study.

I am taking Norco, Flexeril, Dilaudid, Ambien, Zoloft (am), and multiple doc-approved vitamins to help these conditions. The pain gets so severe and I have tried Requip at a low dose with no change, then a higher dose caused me nausea and vomiting all night. I also tried Lyrica, Neurontin, Zyprexa (sp?), all with adverse effects, fainting, dizziness, vomiting, lethargy, etc.

Ultram did not relieve the pain. I do exercise as much as I am able, but nothing seems to work except all the narcotic medication I am taking now. I am afraid of addiction, because I am needing more and more to stop the symptoms and pain. I even tried guai for the Fibromyalgia, and it got increasingly worse to the point where I had to stop. I have 8 doctors trying to help me and I have filed for disability due to the high number of meds I am taking.

Any other suggestions?
Lisa

A Medical Reply

It is not clear (and this may be hard to sort out) whether the pain is due to fibromyalgia or RLS. If the problem is RLS then in your case, narcotics may be the way to go. Norco is reasonable and keeping the dose below 15 mg or so per day should be quite safe with minimal risk of dependence/tolerance. I prefer methadone as it works even better for RLS and has no acetaminophen (Tylenol) in it (the Tylenol has no role for RLS so can only cause side effects).

You may also want to consider changing Zoloft to Wellbutrin as it tends to worsen RLS.

Sent: Tuesday, October 24, 2006 1:33 PM
Subject: RLS and Parkinson's; Sinemet and Requip

My mother-in-law has had restless legs syndrome since she was a teenager (she's now 84). She was diagnosed with Parkinson's almost 2 years ago and has been taking Sinemet (5 X 25/100 per day). She's been experiencing a lot of augmentation of the RLS, as well as some rebound, with significant disturbance of sleep. We asked her neurologist about switching to an agonist, and he prescribed 0.75 mg Requip before bedtime while reducing the Sinemet to 4 per day. After 3 weeks, the overnight RLS symptoms have improved, but daytime (mostly afternoon/evening) RLS is only slightly better and still bothersome.

Her neurologist is, unfortunately, not very engaged and has given us the go-ahead to experiment with changing the doses of Requip and Sinemet to see what happens. Is it advisable to slowly replace the Sinemet with Requip, or would simply adding more Requip be a better first step? If replacing Sinemet, what would be an equivalent dose of Requip per 25/100 mg of Sinemet?

Angela I.

A Medical Reply

You do have the correct idea which is to replace the Sinemet with Requip. Doses of Sinemet more than 1 of the 25/200 generally result in augmentation. There is no conversion factor for replacing Sinemet with Requip. We generally stop the Sinemet and use a narcotic for a few weeks until the augmentation is gone. At that time, a much smaller dose of Requip (than when abruptly removing the Sinemet) should take care of the RLS symptoms.

Her case is somewhat more complicated in that she might need higher doses of Requip for her Parkinson's disease (especially in the absence of Sinemet). Requip, at higher doses may also cause augmentation, so be careful.

Sent: Wednesday, October 25, 2006 12:24 AM
Subject: what don't work for RLS

What will make RLS worse or does not help

1 glass of beer or wine it doesn't matter it gets horrible
Legatrin is at the top of my list when I took it, it was so horrible, don't buy it for RLS
Bengay don't help
Motrin
Tylenol
Pain patches
wrapping my legs up tight
Cold packs
Massage makes it worse instantly
If my legs just even touch each other it makes it worse
Exercise seems to make it worse for me

What makes RLS better

Klonopin seems to help me a little I only tried it a few times though
I was on Zoloft for a while that is a crazy drug I took it for maybe 4 months and during that time I was totally unable to feel any emotion what so ever, I didn't even really notice it until I stopped taking it.
Vicodin 750 mg or Norco 1000/325 knocks it right out the problem is I feel like I need them all the time now
When I get it really bad in my legs as soon as I stand up its gone that is what I don't get how can that be?
Now the times when I get it in my neck and shoulders there is really know stopping it no matter what. Can it go other places as it get worse?

I am 45 now what is in my future it really scares me,
Donna

A Medical Reply

Alcohol worsens RLS. Most of the other products are known to have no effect on RLS. However, massage helps many but some do not like it. Mild to moderate exercise generally helps while vigorous exercise worsens RLS.

Opioids such as Vicodin help RLS. Standing or movement helps RLS but we do not understand why. RLS can go to other body parts as it worsens.

The good news is that we currently have many medications to treat it and many more on the way so that almost everyone should be able to obtain relief (both now and in the future).

Sent: Friday, October 27, 2006 5:08 PM
Subject: Iron for RLS.  (See previous letter on page 69, Sunday, August 20, 2006 5:39 PM)

I want to tell you that I am one of the lucky ones-- it's been determined that I have an iron-stores deficiency, rather a severe one-- which has caused me to have HORRIBLE problems with restless limb syndrome. After taking an expensive prescribed supplement for 30 days now the relief I am experiencing is tremendous. I had a sleep study two weeks ago, with 7 electrodes on my fact alone, and the results were near normal. The change has been profound, and I feel better every day. This a real god-send and I encourage everybody who has this problem to have the specific blood-work done to diagnose this problem, if it exists.

While I was waiting for relief, Darvocet helped a great deal and I thank you for not scaring me off using that medicine-- it worked wonders, though I, privately, hate the idea of taking a narcotic.

You are a super person, to help those of us who have this life-ruining problem.

Barbara S.

A Medical Reply

We do advise every RLS patient to have a serum ferritin level as soon as they are diagnosed. Even when there is no evidence of anemia and serum iron levels are normal, if the serum ferritin levels are decreased, iron therapy may help RLS symptoms.

Most everyone hates the idea of taking narcotics. However, in low dose they are extremely safe and effective for RLS. Because of their stigma, many RLS patients end of suffering needlessly.

Sent: Sunday, October 29, 2006 8:45 PM
Subject: Neuropathy and RLS?

For about the past year, I have had more and more pain and burning in my feet and lower legs when I’m cleaning house or working in the garden. I’ve had RLS for about 5-6 years and am taking Requip. I’m a support group leader in Maine. Can you please tell me what the connections are, if any, between RLS and neuropathy?

Sally B.

A Medical Reply

There is a small subset of RLS patients who have an associated neuropathy. This tends to occur more often in RLS patients who develop the disease after age 40. However, whether the neuropathy occurs with or independent of RLS, the treatment is the same. Drugs such as Neurontin, Lyrica, etc. may help the neuropathy symptoms regardless of the origin.

Sent: Monday, October 30, 2006 8:59 AM
Subject: RLS triggered by trauma?

You say it is common for trauma to trigger or worsen RLS, what about head trauma; is there any medical literature on this?

Cindy A.

A Medical Reply

There is no literature about the issue of trauma worsening or triggering RLS. This is merely an observation that has been made by those of us who treat a lot of RLS patients. In fact, there are some RLS experts who believe that trauma has nothing to do with RLS and it is simply that patients tend to remember and report the coincidental occurrence of trauma (which is a very memorable event) and the onset of their RLS.

From my experience, the most common type of trauma that bothers RLS is trauma to the spine but otherwise I have noted a broad spectrum of injuries that may worsen or trigger RLS. Head trauma is no more common (in my experience) than others.

Sent: Monday, October 30, 2006 5:47 PM
Subject: Worsening of PLMD and emergence of RLS

I am 50 years old and have been taking 0.50 mg Requip at bedtime for two years for PLMD. The PLMD was diagnosed as a result of a sleep study. I also have sleep apnea which is being successfully treated with an auto-adjust CPAP. This dosage of Requip been adequate to control my symptoms.

Recently, I have begun to get symptoms of RLS in the evening. I have also experienced symptoms while trying to nap in the afternoon. Although I have had occasional bouts of RLS over time, they have been transient and gone away in 2-3 days. These are not dissipating and are more severe than previous occurrences. My PLMD has also worsened. I wake up in the morning and my calves and ankles are sore from flexing. I spoke with my doctor and he suggested I try upping my dose of Requip to 0.75 mg at bedtime for 2-3 weeks. I have tried this now for a few days and have not noticed any improvement. It may even make things worse. This has definitely impacted the quality of my sleep.

I am wondering if the effectiveness of the Requip is diminishing or if my condition is worsening with time. I am wondering if a change in medication (even temporarily) could be in order. I have also read that in some cases a "drug holiday" from one medication for a period of time can be helpful.

I would appreciate any comments or suggestions you may have. My doctor is on vacation until next week and I would like to have information on possible alternatives to discuss with him when he returns.

Tom S.

A Medical Reply

Your experience is actually not unique and is likely a common problem that may be seen when treating PLMD patients (who do not have any symptoms of RLS). It is thought that PLMD may be an early form of RLS that may evolve into RLS with time. However, taking dopamine drugs (such as Requip) may possibly hasten this development.

As your problem occurred 2 years after starting Requip, there is a reasonable possibility that your disease has just naturally progressed to RLS and the Requip has nothing to do with this problem. However the earlier onset of RLS and worsening of symptoms (not helped by an increase in dose) sounds like augmentation by Requip.

If Requip is worsening the problem then stopping it would be a good idea. Neurontin would be a reasonable choice to replace it for treating your PLMD (and should also help the nighttime RLS). You can use a painkiller to treat any daytime RLS that may bother you when stopping the Requip.

After a month or so (the drug holiday from Requip), your dopamine receptors may be back to normal. Requip (or Mirapex) may be re-introduced and work well. However, it should probably be maintained at a lower dose (.25 mg, which may mean that you will need an additional drug for full effect) or else you may risk the recurrence of increased RLS.

Sent: Monday, October 30, 2006 8:40 PM
Subject: Muscles Jumping in Legs?

I can actually see as well as feel the muscles twitching or jumping in a few places on my legs. It is more noticeable, of course, in the evenings because I am sitting or lying down. My feet also feel like they are tingling or burning sometimes. This is worse when I have been on my feet for long periods of time.

Putting my feet and legs in cold water feels great but doesn't stop the twitching. Heat seems to make it worse.

Do any of these symptoms sound like RLS?  I have had tests for any kind of nerve problems and they are all negative.

Carol F.

A Medical Reply

The muscle twitching that you are noticing are due to muscle fasciculation which is a common phenomenon that occurs when muscles are fatigued. This has nothing to do with RLS.

Sent: Tuesday, October 31, 2006 3:19 PM
Subject: RLS Medications

I am a long time RLS sufferer. My RLS is 24/7. and I have been on EVERY conceivable medication in the past years. As of 1999 I was put on Mirapex with pretty good results. However I need a drug holiday as the Mirapex stops working after a year or so. At that time I go back to Permax which works ok to. (I am on a drug holiday from Mirapex now).

When on Mirapex I take 3 of the .25 mg. tablets spaced out over the evening. 6, 10, and during the night. On Permax 0.05 I take 8 tablets, also spaced out over the evening. 6, 8, 10, 12 and a possible dose during the night. I wake often even with Immovane 7.5 mg. My doctor also added Oxycodone 5 mg. (take as needed) as I was having lots of breakthrough RLS. I have been on Requip and Neurontin, both with poor results. I would appreciate any advice you can give me regarding my meds. and my dose. I am seeing my GP next Fri. and will be able to discuss dose with her.

Rosemarie H.
68 years old in Canada

A Medical Reply

I would suggest that you take the oxycodone 5 mg (or even 10 mg if necessary) every night. At that dose, there is virtually no chance (unless you have a history of drug abuse or do not follow the directions and start increasing the drug) that addiction, dependence or tolerance will occur. Methadone (5-10 mg) works even better, but most doctors feel uncomfortable prescribing it (in part due to their unfamiliarity with the drug).

A Reply from Rosemarie H.

Sent: Tuesday, October 31, 2006 10:20 PM
Subject: RLS Medications, 2nd question

Thank you so very much for answering my question of yesterday - however, I wondered if I should increase the Permax dose since each .05 usually only holds the RLS for 2 to 3 hours. Also, I have taken the Oxycodone (3 tabs. per day) and find that I still have breakthrough RLS.

Should I increase the Permax or the Oxycodone?

I have no history of addition, and will definitely show my GP your suggestion about my drugs and the possibility of Methadone.

Rosemarie H.
68 years old in Canada

A Medical Reply

Permax should last about 6-8 hours per dose, assuming that you are taking an adequate dose. As you are taking 8 tablets total, but at 2 hour intervals, it would be better to take a large dose at longer intervals (like 3-4 tablets every 6-8 hours, as needed). Your total intake of Mirapex is equivalent to a higher amount of Permax (possibly as high as 12/day).

You may need a higher dose of painkiller (oxycodone) in addition to the dopamine drugs. Neurontin may be another drug that you can add to keep the dose of painkillers at lower doses.

Sent: Wednesday, November 01, 2006 1:06 PM
Subject: Flexeril and RLS?

Hello: I was very pleased to find your website. Thank you for your work. I was diagnosed with RLS last year and was taking a low dose of levodopa/carbidopa. It really helped and over time, I actually found I stopped needing to take it. I recently had a car accident and was told to take Flexeril (10mg) three times daily.

It seems as if the RLS is back worse than ever with the addition of this drug. Is it possible that a muscle relaxant can actually exacerbate RLS? Are all muscle relaxants the same in this way or do some not cause this problem?  Is it also true that RLS can come and go like that?

Kelly S.

A Medical Reply

RLS can come and go. It seems that trauma may trigger RLS which may explain your problem. Flexeril and other muscle relaxants usually do not worsen or help RLS.

Sent: Wednesday, November 01, 2006 6:54 PM
Subject: Medicine Reaction

Several years ago, I visited the ER of the local hospital with a severe headache and nausea. The ER doctors administered Compazine via intravenous to me, and I had an immediate reaction that can best be described as "crawling skin". It was probably the most intense terror I have ever experienced. Sort of like RLS all over my entire body at the same time with great intensity.

I have since learned that this reaction has a name - akathisia. Thinking back, it seems that my RLS escalated since then.

Is it possible that a medicine reaction such as this could trigger a lifetime of RLS ?... or escalate an existing condition ?

Thank you in advance. This is a great forum, and your answers are very much appreciated.

SRN
Age 50
Indianapolis

A Medical Reply

Compazine is known to worsen RLS (you should download our medical alert card on our website for all the medications that worsen RLS). However, it should not cause trouble longer than about several hours, so it should not have been responsible for triggering a lifetime of RLS.

A Reply from SRN

Sent: Friday, November 03, 2006 5:09 PM
Subject: Sleep Time Change

I have noticed that consistently, my RLS will subside around 3am, roughly 3-4 hours after it begins when I go to bed. I have experimented with going to bed at 2-3am and had no RLS problems.

My question, does RLS episodes seem to be somehow connected to a person's sleep cycle, or to a particular "slow down" at the end of the day ? I am thinking of actually completely changing my sleep routing to begin bedtime at 2am. Would then the RLS adjust eventually to the "new" sleep time ?

SRN

A Medical Reply

RLS follows our circadian (24 hour) biological rhythm. It typically starts worsening in the late afternoon or early evening, peaks at bedtime, then wanes throughout the night until it is at its minimum by about 10 in the morning.

If you shift your sleep time to 2 am, within several days to a week or so, your RLS will follow the new rhythm and your symptoms will leave only 3-4 hours later (like at 5-6 am). The time shifting only works as a temporary measure.

Sent: Thursday, November 02, 2006 6:26 AM
Subject: Ultram augmentation?

I wrote before about having augmentation from Ultram. My symptoms started coming earlier and earlier in the day and the Ultram wasn't working as well. I have since started alternating 3 weeks of Ultram and 2 weeks of vicodin. That seems to take care of the problem. I am able to drop my Ultram dosage from 5 to 3 tablets for about 2 weeks after the holiday. I

 have taken Ultram for 9 years and taken the 3 day drug holidays every month. That did not prevent the augmentation from happening. But the 2 week holiday seems to restore the effectiveness of the Ultram.

Mary P.

A Medical Reply

A 3 day drug holiday generally would not be sufficient to prevent problems with receptors (like augmentation or tolerance). Usually taking the drug on an intermittent basis (like 3-4 days per week) or taking a prolonged time off (weeks) does the trick.

Sent: Friday, November 03, 2006 12:46 PM
Subject: RLS or venous insufficiency?

I am really hoping that you can help. I am a 51 year old woman in generally good health except for palindromic rheumatism with ANA antibodies. I suffer from menorrhagia and have been mildly anemic for 3-5 years (even though taking vitamin pills as told to by physician). The menorrhagia worsened and this July my physician prescribed the mini-pill to lessen bleeding. I developed a mild DVT (Deep Venous Thrombosis or blood clot) after a long plane ride while on the mini-pill; there was only calf pain, no edema etc., the DVT was seen on ultrasound in a calf vein, then was gone on exam 5 days later.

About 2 months after the DVT (last month) I developed leg symptoms after having a big project to do where I was sitting at a desk >10 h daily. There is tightness and creepy-crawlies in my calves and a burning sensation in a line up my inner thigh, right where my saphenous vein travels. Recheck exam and ultrasound 3 weeks ago showed no DVT, and no varicosities, edema or anything associated with venous insufficiency. My anemia was worse (PCV 28, hemoglobin 9). My physician referred me to a rheumatologist for possible lupus. Testing showed only the ANA antibodies as seen before, no anti-phospholipid antibodies. The rheumatologist said he did not know what the pain in my legs was (maybe phlebitis, he said) but I don't have lupus, and he told me to take ferrous sulphate, 325 mg 3x daily, for the anemia.

Then I read that iron deficiency can be associated with restless leg syndrome. What I have matches RLS in that it is mostly funny feelings rather than pain, it is much worse when I sit and is relieved by movement. I have also had insomnia over the last 3 years (sleep about 5 h per night vs. 8 to 10 before that). However, it is unlike RLS as the leg symptoms do not get worse when I lie down (although I can feel my pulse throbbing in my legs) and I don't kick out at night and I don't have an "urge" to move, although I consciously realize if I get up and walk it will feel better. I was ecstatic when the leg signs disappeared gradually over the first 5 days of iron therapy, however, they returned at about 10 days into therapy (about 3 days ago), but then I had reduced the number of pills daily because of constipation. I am back to 3 pills daily the last 3 days but it does not seem to be doing anything for my legs.

My main hope is that this is in fact restless leg syndrome and not phlebitis, another DVT, venous insufficiency, or post-thrombotic syndrome, all of which are potentially life-threatening! Since my physicians feel it doesn't match those syndromes well, maybe it matches RLS better?

Does this sound like iron deficiency RLS to you? If it is, should the iron supplement have worked already (I have read that it is effective immediately), and if not, why did the signs go away for the first few days after I started the supplement and then come back? My legs essentially only bother me when I am sitting down (it starts immediately upon sitting) but my job is essentially sitting at the computer; is there anything I can do to be able to do this without my legs bothering me so much?

KH

A Medical Reply

It is not clear whether you have RLS or not. The urge to move your legs is one of the essential features to this condition. This urge (which should be virtually irresistible if you do not move) occurs at rest. It does not make a difference if you are lying down or sitting; it is the inactivity, not the position that matters.

An additional criterion for the diagnosis of RLS is that the symptoms should be worse in the evening/bedtime compared with earlier in the day. However, there are also supportive features (that if present help clinch the diagnosis) that include a family history or presence of PLMS (leg kicks during sleep). If these are not present, then a trial of a dopamine agonist (Requip or Mirapex) can help determine the diagnosis as 90% of RLS patients will respond to these drugs.

Iron deficiency is associated with RLS. However, it takes months of oral therapy before any clinical response can be noticed. Your improvement (that is if you have RLS) would likely have been coincidental.

Sent: Saturday, November 04, 2006 8:32 AM
Subject: RLS treatment by switching dopamine agonists?

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

Betty H.

A Medical Reply

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

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