Patient letters on RLS symptoms and remedies- Page 76

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Sent: Aug 10, 2007 1:45 AM
Subject: RLS cure?

Do you know if this website (http://www.restlesslegscured.com/miracle_cure.htm) is a hoax/bs or does this work? I have been a member of the RLS Foundation for a few years and would like info on what this website listed above is about?

I have had RLS for over 20 years and tried everything; it can be very painful.

James

This site is not a hoax but simply one of the many selling "cures" for RLS to make money. The only proof that the "cure" works is testimonials (which really can not be verified). Since about 50% of RLS sufferers respond (in medical studies) to placebo therapy, it is very possible that those who do benefit from this therapy are just simply placebo (sugar pill) responders.

Several of my patients who have tried this "cure" received absolutely no benefit but this is just an observation based on my limited experience.

Sent: Aug 11, 2007 6:19 PM
Subject: RLS and Lovastatin?

I am having so many spells of RLS lately. I have been on 600mg. Gabapentin (which I know is low) since 1999 and had very little trouble. Once in awhile I do need to take Iron if my ferritin levels go below 50. I went on iron the first of the month with no relief in sight. I have only had 2 uninterrupted nights for weeks now.

I did start taking Lovastatin to lower my LDL/cholesterol on the 15th of June. I can't really remember when exactly I started having RLS spells. Was wondering if this is YET another drug that causes RLS? Does anybody have a clue for me? I do go back to the doctor on Thursday to get some answers about it my iron has gone up or not.

There is no known link between lovastatin (or any other cholesterol medication) and RLS.

Sent: Aug 10, 2007 9:26 AM
Subject: RLS hormones/antidepressants

I have been on antidepressants for anxiety for over 10 years and 3 years ago I went on hormones, Prempro and changed from Effexor to Lexapro. I never associated the RLS with meds, and 6 months ago I did not take my prempro for 4 days and my legs felt so much better. So we changed to a different hormone medication, and different antidepressant, Effexor XR, which didn’t help my symptoms.

We tried many different antidepressants and only Wellbutrin XL 150 mg worked, but I have too much anxiety with it and no sleep. So I came off Zoloft for 6 weeks now and we decreased my hormones and my RLS is 50% better. However, I had a lot of anxiety, irritable, basically not a nice person. I really need the antidepressant. So we are trying a combination of Wellbutrin XL 150 mg (for the RLS), and 20 mg of Celexa (for the anxiety). Has anyone else ever had that combination of drugs and did it work? Requip does nothing for my RLS.

Can hormone meds be the cause? I still need these according to my labs.

Antidepressant medications except for Wellbutrin tend to worsen RLS. However, this is a very individual reaction and can vary considerably. Wellbutrin is often taken with the SSRI's (Zoloft, Celexa) or SNRI's (Effexor).

Hormones may worsen or improve RLS. The should be taken for symptoms (such as hot flashes, not to treat low hormonal blood levels.

Sent: Aug 13, 2007 4:00 AM
Subject: Help with my RLS?

I have had RLS for over 30 years now and quite naturally it has worsened over the years. My doctor has me on Mirapex (0.5 mg) now and for the past 4 weeks I have experienced how wonderful it has been to be "normal." The problem is that I have begun to have problems again. I am wondering if I should come off it for a short period of time to avoid augmentation. The only thing I have to take in its place is clonazepam.

Going off the drug for a short period may help this time. But if the problem keeps recurring, you may want to consider changing to another class of RLS medication such as opioids or gabapentin.

Sent: Aug 13, 2007 11:17 AM
Subject: Treatment for my possible RLS?

I am hoping you can offer me an opinion on my situation. I am 38 years old and my family doctor and I recently agreed that I have developed RLS. She has referred me to do a sleep study to help confirm this diagnosis or offer an alternative explanation -my initial consultation is tomorrow. My symptoms have progressed over the last few years and include an electrical feeling, creepy crawlies and uneasiness in my legs in the evening time (occasionally in the afternoon as well) and fidgety legs at night which keeps me awake a lot. But the main symptom I have and the one which is most troublesome to me is a little different than what I have heard from any other person I know of who has RLS (although I admit my knowledge base is not very broad yet).

This symptom is as follows: At night I usually don’t have any trouble getting to sleep initially. I usually sleep through the first 2 to 4 hours before awaking. Then I get a series of what I call ”leg flexings” over the next 3-4 hours during which I can only doze 30-45 minutes at a time. These “leg flexings” are involuntary movements (although I can stifle it somewhat if I try very hard) similar to yawning but only involving my legs. I straighten out and flex my legs and point my toes (either out or up) and contract hard my quadriceps and calf muscles.

I generally awaken an instant before to a few seconds before this happens and then go back to sleep either immediately or up 10-20 minutes later (about once a week I can’t get back to sleep at all once this happens). This started a few years ago as something that only very rarely happened and has progressed to now happening every night between 6 and 12 times. My muscles flex but they do not cramp during these. I have changed beds (mattresses), pillows, sleeping positions, cutting out alcohol and caffeine, taking multi-vitamins, getting my iron levels tested and taking extra electrolytes (I am/was a runner) and changes the frequency and intensity of any exercise I do but none of this has much of an impact. Is this consistent with symptoms of RLS?

At first, upon doing some research I was thinking it might be a form of PLMD but the fact that it only happens during the second half of the night and only 6-12 times a night seems to be contrary to normal PLMD symptoms. Any thoughts you have on this would be appreciated.

Over the past 2 weeks I have tried taking Restoril prescribed to me by my doctor for when I really need a few hours of sleep. The 15 mg dosage doesn’t seem to make any difference at all in my sleeping pattern. I have taken a 30 mg dose twice (2 days apart) and it seems to prolong the initial sleep phase on my night by about an hour (to 4-5 hrs instead of 2-4 hrs). I’m not sure if this is delaying the onset of the “leg flexings” or if I just sleep through the first few.

Mark H.

It does sound as if you have RLS and the associated PLMS (this occurs in 85% of RLS patients). Why you wake up from your PLMS in the latter half of the night may have more to do with the lighter sleep stages that occur during that part of the night. Restoril does reduce awakenings from PLMS but does not really decrease the PLM.

The best treatment would be Mirapex or Requip. They should help you RLS and PLMS equally.

There is no particular need for a sleep study which should simply (at best) confirm the PLMS. Sleep studies do not diagnose RLS which is simply diagnosed by the 4 diagnostic criteria (which is appears you have met).

Sent: Aug 13, 2007 2:44 PM
Subject: RLS treatment and narcotics?

I’ve had severe restless legs for 20+ years (near continuous symptoms when untreated, and includes not just the legs, but also the arms as well). I’ve been treated effectively with Klonopin, 0.5 mg, since 2002 (prior to that Elavil was used with some limited success but I generally just suffered, pacing the floors, not sleeping, and moving incessantly day and night). However, Klonopin, even at a higher dose (as approved by my nephrologist/internist) is no longer working and the past 48 hours have been absolutely miserable. I noticed you mentioned Lyrica as a possible treatment for RLS in some patients (August 7 posting). I was placed on Lyrica, 50 mg, for possible migraine prevention in July. Could this possibly be interacting with the Klonopin and aggravating the RLS?

My other medications include Avapro (irbesartan), 300 mg; Zocor, 20 mg; folic acid, 1 mg; Zoloft, 100 mg; and Synthroid, 50 mcg. I have polycystic kidney disease, but my creatinine clearance is above 60 mg/dl, so renal dosing isn’t necessarily needed. Incidentally, my iron levels are outstanding (in July my iron was 107, ferritin was 308 and iron saturation was 38.6). I have anemia secondary to the kidney disease so my iron levels are monitored regularly and I am treated with Aranesp (darepoetin, a longer acting version of Procrit/Epo) approximately once every 8-12 weeks to increase my hematocrit and hemoglobin levels).

Separately, my doctor and I want to switch from the Klonopin to Mirapex or Requip in order to get me off the narcotic medication. Is one more effective than the other? I do have an unusual response to most medications; those that normally make someone sleepy have little to no sedating effect (including narcotics like Klonopin as well as pain medications and even stronger narcotics used for conscious sedation for surgical procedures; this was noted long before I started on the Klonopin).

While pain is often an issue for me, both from migraines and the polycystic kidney disease (my kidneys are 22 cm long each and I have massive hepatomegaly—my liver has extensive cysts and extends from the right side of my spine down into the pelvis and almost to the spine on the left, as well as protrudes below my ribs) treatment options do not include opiods. I do have a prescription for oxycodone IR to be used only for kidney/liver pain due to the PKD and was recently tapered off OxyContin, 10 mg, after having some very large liver and kidney cysts sclerosed in June (the relief from pain was amazing!). But I definitely want to avoid any opiods if possible so they remain effective for the kidney and liver pain when it recurs (with PKD it will; the cysts continue to form so it’s unfortunately just a matter of time).

My migraines are treated with Botox injections at 90-day intervals, which have dramatically reduced the frequency and intensity of the headaches, and with Fioricet if they’re severe (triptans and ergots are ineffective and cause severe chest pain).

NSAIDs in any form are non-starters due to the kidney disease. Additionally, Tramadol is contraindicated with the Zoloft due to an increased incidence of serotonin syndrome, which I experienced when the Zoloft dose was increased from 150 to 200 mg a few years ago—it was sheer hell, to put it mildly. The Zoloft is prescribed for generalized anxiety disorder (very effective) but Wellbutrin may not be an alternative option for anxiety, as it has a high incidence of weight loss and I am already underweight (cause unknown but extensively tested; I eat plenty of food and thankfully have sufficient total protein, albumin and prealbumin levels).

I religiously avoid all antihistamines and anti-nausea medications; they’ve increased my RLS even when it was well-controlled. I don’t use any decongestants due to my high blood pressure (very well controlled, averaging 110/70).

Caffeine doesn’t seem to make much of a difference in my RLS (although I am sensitive to it when it comes to sleep in general and I avoid having any after noon unless I need the Fioricet, which has caffeine). Sleep, even when the RLS is controlled, is a never-ending challenge. I have serious sleep onset and maintenance issues, but Ambien is of little use (only works for a couple of days and then has no effect) and I haven’t tried any of the other sleep medications and in an ideal world, would like to avoid them. I try to maintain excellent sleep hygiene practices, except when it comes to the RLS and constant pacing!

My RLS seems to start in the left hip and lower back, which I injured 20+ years ago (the RLS came on about 6 months after the injury). I’m 46 years old.

Zoloft may be worsening your RLS. You may want to consider Wellbutrin.

Lyrica should not cause any interaction with Klonopin. Furthermore, Klonopin is not really an RLS drug but rather helps promote sleep for RLS sufferers (which is why it is not one of the medications that I suggest for use in RLS as it also has a very long half-life and causes next day sedation).

Mirapex and Requip are still the drugs of choice unless they are not tolerated or effective.

Oxycodone (OxyContin) is very safe and should remain very effective (for both RLS and pain) if used in small doses (under 20-30 mg per day)

Klonopin is not a narcotic as are the pain medications. It is a benzodiazepine sedative.

Sent: Tuesday, August 21, 2007 8:48 AM
Subject: RLS treatment and narcotics?

Thank you for the information. The sudden severe RLS seems to be subsiding with as the oxycodone gets fully out of my system and fortunately I do not have any kidney or liver pain...yet. I hope to keep it that way, but unfortunately the kidneys and liver develop cysts at an amazing rate and don’t necessarily abide by my wishes!

My nephrologist is leery about the Mirapex and Requip because of the renal dosing requirements (alas the latest tests show my kidney function is now below 60 ml/min) and they want to avoid any additional kidney complications, as do I.

Thank you for the clarification on the classification of Klonopin. Fortunately, Klonopin has never been sedating for me; in fact I have always had high tolerance to all benzodiazepines from the first time I was prescribed one many, many years ago.

I will discuss the Wellbutrin versus Zoloft for the anxiety with my nephrologist and psychiatrist to determine which medication would be the best treatment option for me as well as to minimize any impact on the RLS.

Your website and message board have been fabulous sources of support and information over the years; thank you for the service you so generously provide!

Although there are concerns about prescribing Mirapex (as it is excreted through the kidneys) for those with decreased renal function, just being below 60 is not big deal (there is more of a concern for dialysis patients who may still use the drug). The drug is simply increased more slowly (every 2 weeks rather than every 4-7 days).

Requip is not excreted through the kidneys (it is metabolized in the liver) so mild to modest decreases in renal function do not affect its use.

Sent: Aug 13, 2007 7:18 PM
Subject: RLS problem

I have had RLS for over 20 years and within the last 2 years it has worsen. I started taking .50 Requip about 6 months ago recently I started to notice my symptoms are returning with taking Requip. I read that this is called rebound. the article suggested to take Requip at a different time or reduce your med. I have tried both of these methods and I am still extremely frustrated and find myself up a lot at night. do you have any suggestions?

I can't sleep at night and I am finding it difficult to stay up during the day. I tried Advil p.m. last night with .25 and that didn't work.

Marlen R.

If your RLS is starting to occur in the middle of the night then you need a HIGHER dose of Requip, not a lower dose. That is how we treat rebound. You may also want to take an extra dose just before bedtime.

If your RLS symptoms are starting to occur earlier in the day (which is likely due to augmentation), then you should take your Requip earlier in the day and add a second dose just before bedtime (to treat the middle of the night RLS).

Sent: Aug 14, 2007 1:24 PM
Subject: Permax and RLS?

I have suffered from RLS for a number of years. I have been taking Permax for several of those years. The dosage is 50 micrograms by five daily. What is the limit daily? I am finding that I need to increase the dosage as time goes by.

Shirley C.

You are already on a high dose of Permax. Furthermore, Permax is no longer available here in the USA as it causes heart valve damage. It would likely be much better to change to the safe and more effective Requip or Mirapex.

I started taking Requip 2 days ago and have since been experiencing >an extremely heavy flow. It has never happened before and the only thing new is the Requip. Has this been known to happen?

Requip is not known to cause menstrual abnormalities but anything is possible. If this continues, you may want to stop the medication and see if the problem goes away.

Sent: Aug 16, 2007 8:59 AM
Subject: medication

Is it safe to take 12.5 Ambien CR along with 1/2 to 1 mg of Klonopin for insomnia/anxiety? I've been taking Seroquel with Klonopin for a couple of months now but want to get off of the Seroquel since I know it is a Dopamine antagonist. The Ambien alone does not keep me asleep through the night, I wake around 2ish.

Also, I have daytime RLS only, from morning to bedtime. It is not severe, but it really drives me crazy because it is relentless. I've been prescribed Requip and took it once and it made me very sick even with food. How do you recommend taking it for all day RLS, since it takes so long to take effect?

I'm really tempted to just ask my practitioner for a small amount of vicodin to take in the a.m. I've heard people do very well with this for daytime RLS. Do you think this is reasonable to ask for? I had an extremely low ferritin level from donating too much blood. Below 10. The RLS started a couple of weeks after my last donation. After 3 months of iron therapy it went up to 110. Why didn't it go away?

It is a lot better than it used to be, and I don't have it at night anymore, but I can't run anymore, and it doesn't take much to trigger it again. I'm depressed but can't take the SSRI's, and Wellbutrin was too agitating, couldn't eat, had extreme tremors.

Linda J.
Lakeport

Ambien should not be taken wth Klonopin. If the Ambien does not last long enough, consider Lunesta.

If you cannot tolerate Requip, you might want to try Mirapex (with food). You may have more luck with this medication. If not, dopamine agonists may not be the right drugs for you.

Darvon may be a better choice than Vicodin as it does not contain any Tylenol (which does not help RLS so can only cause side effects). Ultram is also a good choice in the painkiller category.

You may also want to consider gabapentin or Lyrica as another class of drugs for RLS.

Sent: Aug 16, 2007 9:20 AM
Subject: medication addendum

I just wanted to add that I am also taking St. John Wort standard dose, and 5htp 50mg bid. I totally forgot to take it for about 3 days last week, and that's when my depression kicked back in. I'm back on it now. Could this have caused my depression relapse?

The depression may be more difficult to figure out.

Increasing your ferritin level should have helped but it may take much longer to get the iron into your brain even though the blood levels are fine.

Date: Thu, 16 Aug 2007 09:47:18 -0700 (PDT)
Subject: Need Help!!!

I am trying to get RLS info., not for me, but for a very special lady friend who is suffering greatly from this disorder. Her suffering causes me to suffer. She takes a drug called Pamelor ( nortriptyline ). She says she can't stand the side affects from the Med. This is why I'm trying so hard to find info. and help for her.

She did say that the exercises help very much sometimes, that is, with the skin crawling part, but not the cramps. She gets terrible cramps in the arches of her feet and I believe, her calves. I would greatly appreciate any help you can give us. I feel so helpless with her, not knowing much about the condition, or the fact that she and I are so far apart.

Cootabux,
Virginia

The cramps are separate from RLS and tend to respond to quinine which is no longer readily available.

Pamelor may worsen RLS while Wellbutrin may help it. There are many good RLS medications that should help your friend's RLS.

Sent: Aug 16, 2007 1:48 PM
Subject: RLS and sacroiliac joint dysfunction

I have had RLS for over twenty years and have tried just about every drug but now take tramadol as the med with the least horrible side effects. Can sacroiliac joint dysfunction aggravate RLS? Also, when my lower back is out, constipation is a very real problem and can this also make RLS worse?

When I see my chiropractor, the RLS is better, at least it's not as unbearable as when my back is "out".

Any pain or discomfort can worsen RLS. This is a non-specific effect which encompasses many other painful medical conditions.

Sent: Aug 16, 2007 8:26 PM
Subject: I am pregnant with SEVERE RLS and I had to stop Requip.......

I am only on my second night off Requip, ( I just found out I am pregnant) I am going insane....after walking all over my house and 4 warm baths that I only fill the water up over my legs because I am not suppose to take baths either I got 1 maybe 2 hours of sleep. Now here I am exhausted second night and I tried to lay down and my legs and right arm start tweaking.

I am so desperate for sleep that I wonder if its worse for my pregnancy to have no sleep than take a little Requip, I love how the doctors say "sorry you can't take anything", they obviously don't know what a person goes through. I tried to get off Requip when I was trying to get pregnant and I made it to 7:00 am and but broke down and took some because I was so exhausted and delusional I started thing of hurling myself out a window so I couldn't feel my legs anymore.

I was hoping you have some other way to help me go to sleep now that I am pregnant......I have to end this because I can't keep my eyes open.

Becky from Massachusetts

Requip and Mirapex (the two best drugs for RLS) are both Category C and should not be used while pregnant.

The only alternatives are low doses of methadone or oxycodone. They work great but you may have problems finding a doctor who is comfortable prescribing them.

Sent: Monday, August 20, 2007 6:52 AM
Subject: Requip causing a change in eating habits?

I have found that taking 1mg of Requip two hours before my normal bedtime does the trick. Since off of the Celexa (20mg) my RLS mostly begins in the evenings. I am getting a much better night's sleep and not bothered by RLS.

Can Requip cause a change in eating habits? I have turned against food such as thinking about it, preparing it, and consuming it and. lost two pounds in the past three weeks. and Requip is the only thing that is different in my life. I tried to half my medication one evening and had to take the rest of the dose. I am presently on Prozac (10 mg) but that is since my eating problems.

Generally, if Requip has an effect on eating it does so by causing nausea. However, any given individual may experience weight gain or loss (due to fluctuations in the amount they eat) from this or any other drug.

Sent: Monday, August 20, 2007 2:33 PM
Subject: RLS and burning feet?

I have been diagnosed with RLS and take a low dose of Mirapex. But, now I have had problems with my feet getting very hot at night when I go to bed. I have to remove the blankets from my feet to stand it. I am noticing that even during the day my feet will sometimes begin to get hot.

Burning feet can be a problem with RLS but usually occurs with the other RLS symptoms. Why this should occur now that the Mirapex is helping your RLS is hard to understand. This may be a strange side effect of Mirapex. The only way to figure this out is to stop the Mirapex and see if the burning improves.

I also appreciate such fast responses from you with advice and information. When on my regular prescribed medication for Raynaud's and RLS, which is Adalat. I rarely have a problem, unless get cold legs. Easy fix warm them. and do some stretches.

With the use of Maxeran for nausea after Chemo, I had a terrible flare up of RLS. One of my dr. questioned using a sleep aid with it. I told him I though that would also bring a negative response and that many drugs that cause drowsiness have an opposite affect on me. Another suggestion was Stemetil for nausea, and Dexedrine, Can you please tell me if these are negative meds as well.

In the end I convinced him to let me try using the Zofran for 5 days after instead and see how that works. He was mainly worried about sever constipation. But figure I can work around that as am an old hat at dealing with it. Once I was given Detrol La for bladder control to tide me over till surgery, It also had very bad affect on my RLS.

Is there some way to print off the section on the web site of just the things to avoid when one has RLS. It would be a great help to have with me when a doctor. wants to prescribe something.

I would be able to know if it were something advisable or not, and perhaps spare myself the uncomfortable aggravation of symptoms.

Maxeran (called Reglan in the USA) typically worsen RLS. I am not sure what Stemetil is (I can't find it in my drug references) but most anti-nausea drugs (except for Zofran and Kytril) worsen RLS. Stemetil and most anti-nausea drugs (except for Zofran and Kytril) are very RLS unfriendly. Decadron does not affect RLS.

You can download for free our medical alert card that contains all this information (from our index on our homepage) which you can carry with you or give to your doctor.

Sent: Wednesday, August 22, 2007 9:16 AM
Subject: Neupro, Mirapex and Lyrica

I am a 44 year old male who has had RLS since 18 years old. I am now on the transdermal patch Neupro 2mg / day, Mirapex 1.0 mg /day and Lyrica, 300 mg / 3 times daily.

I was treated with many different medications, including Neurontin without any success. My new very young neurologist started me on the Mirapex which has helped and recently Neupro, which was placed on at 1500 hours yesterday. Upon awakening, all of the creepy crawlies were gone, however, I am sitting at work now at 12:13 and the Neupro has completely wore off.

I am going to start placing the patch after my morning shower to see if it works better for me starting it in the daytime, I assume it will. Lyrica was my first big step in getting relief from my RLS symptoms. It felt so good not to have the sensation, but it slowly wore off. The Mirapex has helped, so has the patch.

The Neupro patch contains rotigotine which is a dopamine agonist. Generally, we don't give this with Mirapex which is also a dopamine agonist as they act upon the same receptors. You may want to be careful to make sure that you are not getting augmentation from your dopamine agonists which is requiring you to need a higher dose.

Sent: Wednesday, August 22, 2007 10:40 AM

I have been taking both Lyrica and Neurontin for my legs, but they keep getting worse. It starts bothering me sometime during the evening or later at night before bedtime. I then have to keep taking more and more pills. I have been taking 200 mg Neurontin in the morning, then after dinner, 100 mg Lyrica. Then about 11:00 PM (I go to bed about 2:00 am) I usually take 1600 mg Neurontin with 50 mg of Lyrica (or 100 mg of Lyrica with 800 mg of Neurontin). But my legs keep up, and late into the night, I have to keep taking 50 mg more of Lyrica until it stops. Since I only have symptoms at night, should I just forego taking any of this until nighttime, and take it all at once then?

I am wondering if I should try opiates again if none of this works. I have stomach problems though, so would probably have to take Phenergan with it. Would that be a bad thing to take long-term?

I just found out that when I tried a new drug for my stomach, Zegerid, it did wonders for my legs! I could take much less of the other drugs, and I had no symptoms - it was wonderful! Unfortunately, by the third day of taking that, it made me so tired and sleepy, I could hardly function, so have to give that up.

Generally we do not combine Neurontin with Lyrica as they are both anticonvulsants and likely work in the same manner. You would likely do better sticking to one (Lyrica, likely) and just increasing the dose until it becomes effective. There is no reason to take the medication when you have no symptoms so you should take your first dose 1-3 hours before symptoms tend to bother you.

If the narcotics cause nausea, you should not use Phenergan as this drug typically worsens RLS. There are newer (but very expensive) anti-nausea pills (Kytril, Zofran) that do not bother RLS.

I have no explanation as to why Zegerid (another brand name for Prilosec) should help RLS or make you drowsy as those are not properties of that drug (or class of drugs).

Sent: Wednesday, August 22, 2007 9:00 PM
Subject: RLS getting worse on Requip?

I am new to the medication portion of this issue. I had my first incident of RLS (I didn’t know what it was until I saw the commercials for Requip) when I was pregnant 21+ years ago. In early July I went to my doctor for another issue and we wound up discussing the RLS and she suggested Requip. I have occasional systems when I am over tired, especially in the car and I am almost completely unable to sit through a play or a movie.

However since I have been taking the Requip my symptoms have greatly increased. Every night around 7 or 8, I begin to have a total inability to be still. It also occasionally occurs during the day. I have been taking Lexapro for about 9 months, however the increase in my symptoms sees directly associated with the Requip.

I would talk with my doctor, but I don’t think she is very familiar with Requip as she gave me incorrect dosing information initially – 3 times a day – versus working up to three mgs a day. I’m not sure what to do. I tried to quit cold turkey, but could not stop moving.

What type of doctor should I see about this and what do you recommend. I’ll go crazy if I’m like this for life.

You most likely are experiencing augmentation (worsening of your RLS) from the Requip. An increase in dose may help somewhat but will probably result in more augmentation in the near future. The best thing to do is to discontinue the Requip. Typically, we give opioids to treat the markedly increased RLS withdrawal when going off Requip (which you have already unfortunately experienced). You should be back to baseline (where you were before you started Requip) within a week or two.

At that point, treatment with an anticonvulsant (gabapentin or Lyrica) and/or continuing with the opioids are the best options. A neurologist or sleep specialist (make sure you go to one who sees a lot of RLS patients and is familiar with augmentation) should be able to help you get through this tough problem.

Sent: Thursday, August 23, 2007 7:55 AM
Subject: RLS getting worse on Requip?

Thank you so much. I have been terrified that I would be this way forever.

Sent: Friday, August 24, 2007 1:09 PM
Subject: Severe nausea with Requip?

I have recently just started Requip, and I have increased to 1mg for 5 days. I am experiencing severe nausea with vomiting; inability to eat, and also flushing and excessive sweating. I can tell the Requip is working, being free of symptoms this past week. I have waited for years to start medication. My sister and mother also see a neurologist for RLS. I have tried other comfort measures but it has become unbearable, and has effected my ability to sleep and therefore work.

Does the nausea improve with time? Should I continue taking the Requip and see if the symptoms improve? Can ondansetron possibly help?

JoBeth

If you increased from .5 mg (and had no nausea) and just developed nausea with the 1 mg tablet, you should probably go back to .5 mg for a few days. You can then increase to .75 mg (use a .5 mg and a .25 mg tablet) for a week or so and only then if needed (and tolerated) increase to 1 mg.

Typically, the nausea should get better with time. Additionally, you can take the Requip with food and significantly alleviate the nausea.

Ondansetron (Zofran) or Kytril can help the nausea and will not worsen the RLS.

Sent: Friday, August 24, 2007 6:24 PM
Subject: RLS follow up

I really appreciate you trying to help me with my RLS. After trying numerous medications and therapies I feel like I should carefully give opioids a try. Nothing has been able to help me for long. I am still bothered by these daytime leg sensations. I am sleeping well and feel rested when I wake up but during the day is what drives me crazy. I can't concentrate because I'm constantly feeling those sensations in my legs.

Do you run into many cases like mine where the daytime sensations are the main problem and not the night? I'm feeling discouraged because this spring after starting cabergoline I was feeling good for about a month and then it seemed to wear off. I tried taking more but it didn't seem to help. I know feeling good is possible because I did earlier this year.

What opioids would you recommend bringing up to my doctor for my situation? He said at my last visit that we may have to try opioids. Can I take them daily long term and feel good without side effects? Do most doctors add them to the other medications that the patient is taking for their RLS or do they simply take the opioids. I am not an addictive person and would be very careful taking them.

Once you get the right dosage with them, is that dosage very stable? Can I just try them to see how they would help? Are they typically successful?

John P.

Opioids work extremely well for most (but like any other drug, not for all) RLS patients. They can be used alone (when no other drugs are helpful or tolerated) or in combination. If your other drugs are controlling some of the symptoms, then you will need considerably less opioids if added to your regimen compared to using them alone.

It is often best to start with the least potent opioid, Darvon. This drug has the added benefit of not containing acetaminophen (Tylenol) which is very common amongst most of the low to medium potency opioids. Another good first choice is tramadol (Ultram) which is similar to the opioids but is probably not in the same class (and should be much less addictive).

If these don't help, then changing to the more potent opioids like methadone (my favorite as it works really well) or oxycodone should be quite helpful. Once you find the dose that helps you, it is uncommon to need to escalate your dose unless the RLS worsens with time or for other reasons (like a new trigger such as a new medication that increases RLS symptoms).

Sent: Sunday, September 02, 2007 11:32 AM
Subject: Re: RLS follow up

Thank you for your tremendous help with your responses. My neurologist has put me on 5mg of methadone along with reducing my cabergoline to .5 mg daily. I have been taking this now for five days. I feel it maybe helping my legs a little but I'm feeling a little lethargic.

Does it take awhile for your body to get use to the methadone? I feel like I'll probably need more methadone for my legs but I don't want to be lethargic. What dosage of methadone do most people take for restless legs? Can If function normally while on the methadone? I need a lot of energy at work.

I'm seeing my doctor again in ten days. If he increases the methadone, is he likely to add a second dosage later in the day or just increase the one dose. Right now I'm taking the cabergoline at night and the methadone in the morning.

John P.

The range of methadone for treating RLS is between 2.5 mg per day up to 10 mg three times daily. Each dose typically lasts about 6-10 hours and should be dosed accordingly.

Your body may get used to the methadone and the fatigue/lethargy may resolve. However, this is a very individual phenomenon. Raising the dose may worsen this problem but then you may adjust to it (only trial and error will let us know for sure).

I have had RLS for years with the last several weeks insomnia becoming a related problem. Last night during a sleepless period I found your site and could not believe the "ask the Doctor and answer part". Your site is wonderful!! Not only are your readers intelligent, but all the questions and answers seem to be so "right on". I can relate to the questions 100%. Lots of the answers about the different meds are over my head because the only drug for my RLS has been Requip, but in general I follow.

However, the reason I'm writing is just to say THANK YOU for providing such a site. Some of the folks who have written in with questions have described their symptoms better than I could - and that's the point - I had my girlfriend read the question/answer part together with me and now she has a MUCH better understanding of what I'm dealing with - thanks to your web site.

Once again, thanks again for the site, its THE REAL DEAL!!!!!! Sincerely,

Scott J.

I took Requip for several months and had a lot of side effects. Is it worth trying Mirapex with hope of having different reaction to it? I know they are the "cousins" but I'm hoping that Mirapex could help me.

They both act upon the same dopamine receptors but side effects can be different. It is very hard to predict if you will react poorly to Mirapex but it is often worth a try. Start with a very low dose (1/2 of a .125 mg tablet) and increase the dose slowly (no sooner than a week each time and only by .125 mg each time) and you may have a much higher change of success with less trouble from possible side effects.

Sent: Sunday, August 26, 2007 8:38 PM
Subject: RLS questions while breastfeeding?

I am a 29 y/o female with RLS. I started having symptoms about 9 years ago, but only when taking meds like Benadryl. My problems with RLS began in earnest about 14 months ago when I started taking Zoloft for ppd. I took it for about 4 or 5 months before realizing it was causing my RLS symptoms. Unfortunately, even after stopping the medication my symptoms are still present. Slightly less, but still in the moderate range.

I have daily symptoms usually beginning at around 8 or 9 pm. Mostly in my legs but often in my arms and even torso. They get progressively worse after a few nights of less and less sleep. I began seeing my family doctor about this 4 months ago. He prescribed vicodin 5/500 to be taken .5 to 1 tab as needed max ten per month for RLS. I am not a candidate for benzodiazepines or drugs like Requip because I am breastfeeding.

The Vicodin works wonders and over the past few months I have figured out that one tablet every evening works best. I take 2 days off every two weeks as suggested on this sight to lessen the possibility of dependence. Recently my doc and I reevaluated my situation. He is concerned about taking too much of the vicodin, as he wants to see me in the 15 pill a month range as opposed to the 26 pill a month range.

At my last appointment he wrote a script for another drug that he wants me to alternate either every other week or every other night. The drug he prescribed is Vistaril. I'm sure you can imagine my horror the first time I took this med. Probably the worst RLS I have ever had. Not only uncomfortable, but extremely painful RLS over my entire body, and even after 2 Vicodin and 12 hours it didn't go away.

Needless to say, when I looked up this medicine I was very upset to find that this is one of the drugs that shouldn't be used in RLS patients. This makes me feel like either my doctor is a complete idiot, or he wanted to kill me (just joking, but really it was that bad). This just happened yesterday and it was a weekend, I am planning to call my doctor tomorrow to discuss our next step. I know doctors are often hesitant to prescribe daily opiates, but I don't know what else to do. This medication works for me and without it I don't sleep.

I have two young children who need a functioning mom. Is it unusual for an RLS patient to need daily medicine like this? Should I just look for a different doctor who is willing to prescribe what I need? Also, I asked my doctor about the possibility of the Zoloft causing my continued RLS even though I stopped taking it, but he said that wasn't possible. I read somewhere though, that some people experience augmentation from this kind of med that never goes away.

Zoloft and other SSRI antidepressants may trigger or worsen RLS but once they are stopped, the RLS should revert back to baseline (the level it was before the Zoloft was started). Your RLS may be worse due to other factors including iron loss from your pregnancy.

Breastfeeding presents a very significant difficulty for treating RLS. Almost all the drugs either pass into the milk and can affect your child or suppress lactation (the dopamine drugs). Vicodin has not been well studied for breastfeeding mothers and is therefore not recommended for use in this group. Methadone has been used the most in breastfeeding mothers (in much higher doses in heroin addicts) and seems to be fairly safe (although you may have quite a bit of difficulty finding a doctor to prescribe it to you).

The simplest solution would be to stop breastfeeding as that would make your RLS treatment so much easier. However, that is a decision that only you can make after weighing the pros and cons of continuing your breastfeeding.

Most physicians have no idea about the medications that worsen RLS. You should keep a copy of our free medical alert card with you and give one to your doctor (it contains the list of medications to avoid and RLS friendly substitutes).

Sent: Monday, August 27, 2007 8:33 AM
Subject: Mirapex and hallucinations?

I took Requip for RLS for months with great results. However, it eventually quit working even though I was up to 3 mg each night. Right after that I had emergency surgeries for a perforated colon and was off of all meds for some time. Did not have RLS symptoms at all in the hospital but I was on morphine drip at the time.

Once I was released from the hospital and recuperated the neurologist put me in Mirapex. I began the starter pack on a Tuesday and that Saturday I drove for the first time in a while. I was sitting at the red-light and I remember looking in my purse to get out some money for the drive thru I was headed towards. The next thing I remember, the car was moving by itself and I was headed across a busy intersection and I had a red light. Needless to say I hit an oncoming car.

I remember the car moving and not having the wherewithal to stop the car, I remember the oncoming car coming right at me and not doing anything about it. The first time I had sense about me was when my car came to a stop and I had sever muscle spasms in my back to the point I could not get out of the car so I just sat there until help arrived.

Thank God no one was hurt. I was charged with running a red light. I was not on any other meds at the time. I had taken the Mirapex the night before around 7 pm. I had gone to the local home improvement store that morning with my husband and had no problem. Nothing happened until I was sitting at a dead stop at the red light waiting. Then I have no idea what happened to me. It is driving me crazy trying to figure out what happened.

The box of Mirapex indicates that hallucinations could occur and not to take when driving, however, as I said, I had taken it the night before. It was 14 hours earlier. Could I have fallen asleep that quick or was I hallucinating. Every time I close my eyes I relive the whole thing, but cannot figure out what happened. I do not have any history of falling asleep like that or hallucinating.

Although Mirapex can cause hallucinations, this is more of an issue with the much higher doses used for Parkinson's disease. Furthermore, it does not sound as if this was your problem.

Mirapex has been associated with "sleep attacks" (this is what the package insert is referring to when it warns about driving) although even those occur more frequently with the higher doses used for Parkinson's disease. It may be in your case that the Mirapex was partially responsible for this "sleep attack". As you were only the lowest dose (.125 mg of Mirapex) that has the lowest potential for causing a sleep attack (however, this can certain happen by itself in susceptible individuals), it may be that you were over-tired and the Mirapex pushed you over the edge.

However, after this episode, you may want to consider other treatment for your RLS.

Sent: Tuesday, August 28, 2007 7:19 AM
Subject: SIX YEAR OLD WITH SYMPTOMS

I have a six year old who has been diagnosed by our pediatrician with "growing pains" and "restless legs" and he has prescribed a muscle relaxer. Although this helps, it eventually stops working. My son has suffered with this for as long as I can remember. I have been researching the effects of RLS in association with Celiac Disease.

He does have several symptoms associated with Celiac Disease, but I am skeptical to bring this to the attention of our pediatrician, because it took him nearly 4 years to finally diagnose the RLS (which I believe, the doctor thinks are just growing pains). HELP!!!!

My son suffers every day from this. What can I do. Should I try to eliminate gluten from his diet, or use supplements. I don't want to do anything unnecessary, but he needs some relief.

Susan P.

RLS in children is a difficult issue as very little research has been done and our knowledge base is quite poor. Celiac disease may have some effects on RLS but this has not been studied in a systematic way in order to know what helps or hinders. Studies done on children currently are performed on those who do not have any other disorders.

It would be best to make an appointment with a pediatric RLS specialist (there are some of those available) to get further information on his diagnosis and treatment.

Sent: Friday, August 31, 2007 10:42 PM
Subject: RLS and Mirapex and the FAA flying rules?

I just came across this discussion, and I want to ask about Mirapex….My husband is an RLS sufferer, at age 59. He has been taking Mirapex for the last 5-9 years. He also has sleep apnea, for which he has been prescribed Ambien. He was also diagnosed with PTSS, probably from Vietnam. For that, he was taking Wellbutrin.

Last June, he went to take the physical to renew his pilot's license, and failed it, for the first time in his life. Needless to say, it has really upset him. The FAA told him that because he takes Mirapex, they will not pass him. Being a very stubborn, formerly active Marine, he decided to quit taking his Mirapex AND Wellbutrin, so he can get his pilot's license back. His weight was up, and he feels that if he gets down to a weight range he should be in, and exercises, that he can make the RLS go away. He uses a "Snoring Machine," as I affectionately call it. This CPAP machine has helped him immensely, with his sleep apnea. The FAA did not complain about the CPAP machine.

I don't suppose I have to describe to you, the suffering he imposes upon himself (and me,) as he weans himself off the Mirapex, and the Wellbutrin. His blood pressure has gone up again, because he cannot sleep. He has gone for several days, with only about 2 hours of sleep, and he doesn't only just twitch his leg when he does fall asleep! He sits halfway up, and his whole body seems to spasm! Finally, he gives up, at about 2 in the morning, and decides to take the Ambien, which of course, makes him sleep for the whole day.

Can you tell me why the FAA would frown upon pilots using Mirapex? I have always heard that it is not addictive, but my husband is convinced that because of his worsening symptoms since quitting it, he MUST have been addicted to it! Last night, he wanted me to get him some beer or wine, so he could fall asleep! I told him that if he thought he was addicted to Mirapex, and trying to "kick the habit," then why did he think that alcohol would be a better crutch? He is driving me nuts, watching him going downhill, like this. I made an appt. with his PCP, which he wants me to cancel, but I want the doc to explain to him that Mirapex is not addictive, and I don't think Ambien is, either.

I have heard that the FAA is really starting to crack down on private aviation, and finding more and more ways to make everyone's lives miserable. It must ultimately be problems caused by insurance companies, I would bet.

I also made an appt. for my husband to go back to the FAA doctor for another physical, at the end of September, and to tell them that he no longer takes Mirapex. Then when, and if he gets his license back, to go back on it, if he needs to, which I strongly suspect he will. I guess he is just too honest, and has just managed to expose himself to being snubbed by the FAA.

I would really appreciate hearing your opinion on my "Grumposaurus" hubby. I sleep in the living room, on a recliner chair now, for self-defense. It used to be very pleasant and we all got our sleep, but now it's a sleeping-warzone!

Darlene S.

The problem with Mirapex is that this dopamine agonist (Requip is the other major one used for RLS) have been associated with "sleep attacks" during daytime activities. This occurs more commonly at the higher doses used for Parkinson's disease but has also been reported to a much lesser degree in RLS patients.

As such, the FAA has changed its rules (it used to look at these drugs on a case by case basis) to issue a blanket rule that they are not acceptable for pilots (even though only a small minority of those taking Mirapex for RLS will ever have problems with daytime sleepiness or sleep attacks). Check out this link: http://aviationmedicine.com/resources/files/VFS%202Q07%20Aeromedical%20Newsletter.pdf.

Your husband is not addicted to Mirapex. He merely needs the medication in order to treat his RLS symptoms (so that he can live normally and get some sleep). Ambien is also not an addictive drug except for very rare instances.

If he won't or can't take Mirapex or Requip, he may do well with one of the anticonvulsants (gabapentin or Lyrica) or an opioid.

Sent: Sunday, September 02, 2007 5:51 AM
Subject: RLS and Requip?

I am a 78 yr old male and I have a very bad case of RLS. I have been diagnosed with RLS for over 30 years. I have used Mirapex, Klonopin and several other drugs. My arms are now beginning to jerk just like my legs do. I also have Sleep Apnea and use a C-Pap Machine. I am presently taking REQUIP 2 mg 6 times a day and in the evening with the last 3 doses of Requip I take NEURONTIN 300mg along with the Requip.

I have been on this combination for 3 years and if my nerves are bad my legs start jerking. I am going to ask my doctor if I should increase the Requip. The RLS rules my life. I am sleepy all day long and I feel that medications are part of the reasons, I have tried taking less, but then the RLS starts up.

Your dose of Requip is already very high and may very likely be causing daytime sleepiness (in addition to Neurontin that also tends to cause sleepiness).

It would be better to decrease your dose of Requip significantly and add a painkiller (an opioid or tramadol) which should bring you relief of your RLS symptoms and markedly reduce your drowsiness.

Sent: Sunday, September 02, 2007 4:14 PM
Subject: Periodic Limb Movement Disorder -- help!

My husband is 63 years old and is in generally good health, although he leads a sedentary lifestyle and is probably 20 pounds overweight. Over the last 10 years he has developed what would appear to be Periodic Limb Movement Disorder; this began as slight movements of his toes and feet and now can be anything from regular spasmodic movements of his ankles and legs to (what feels like) a convulsive jerk of his whole body. He reports no symptoms of RLS whatsoever. He did have a fairly serious back injury many years ago but made a full recovery without surgery.

The movements do not awaken him, but are playing havoc with my ability to get a good night's sleep. We would like to find a solution which does not involve sleeping in separate beds.

Your husband's problem is really not his problem (unless he has daytime sleepiness as a result of his PLMS, not PLMD as the D implies a disorder which does not appear to apply to him), but rather your problem as it interrupts your sleep.

Separate beds is the best solution but since you don't like that one, here are some others. You can use twin beds and separate them by a fraction of an inch at sleep time (you can even use the same covers). This would prevent his kicks from bothering you. Alternatively, you can get a king size memory foam bed (such as TempurPedic) that markedly dampens the leg kicks.

If the above solutions do not appeal to you, then you may need to take sleeping pills or suffer.

Sent: Monday, September 03, 2007 11:38 AM
Subject: RLS and SAM-e

Quoting "Mind, Mood $ Memory" newsletter: "SAM-e is thought to have a number of effects within the brain, including: Increasing the action of neurotransmitters such as dopamine, serotonin and norepinephrine," It seems that SAM-e should, then, be helpful in coping with PLMD. Is there such evidence? Problems? Dosages?

Ron Jager
San Marcos, TX

There is no known scientific evidence (that I am aware of) that supports any benefits of SAM-e for PLMD or RLS. Like many such non-prescription items, they may have some testimonial case reports (which likely work through the placebo effect) but these are quite common even with the "sleeping with soap" remedy.

Sent: Saturday, September 08, 2007 8:22 AM
Subject: RLS and sleep apnea?

I am 69 yrs old and have had RLS since I was in my 50’s (also had third trimester of three pregnancies). My Primary Care MD has tried many medications. The dopamine class makes me vomit, sweat etc. So for two years took codeine until it no longer worked. At that point my primary care sent me to a neurologist. He was reluctant to sleep test me, but did so at her insistence.

The results were that I have sleep apnea as well. To help me adjust to the CPAP mask etc. she game me Lunesta. My RLS disappeared for a year while I took this. Medicare RX didn’t want to pay for Lunesta, so I thought it was time to stop anyway and to my dismay the RLS reappeared in force within 24 hours. I then did go back on Lunesta but the RLS has broken through and I am up at night again. So I have gone back on the narcotic with fairly good results.

Should I be taking narcotics with sleep apnea? Someone told me they are sleep depressants. Should I alternate the Lunesta and narcotic? Or try something else. Do people have the extreme nausea when they use the new patch or is tolerated better than the pills. I gained a lot of weight on Lunesta. Is that common?

Opioids do potentially worsen sleep apnea. If you will be using the opioids regularly, it may be beneficial to repeat a sleep study while on them and see if you need a higher level of CPAP to take care of any potential increase in your sleep apnea.

Lunesta has not really been associated with weight gain so would be unusual to blame that drug for your increased weight. The Neupro patch may cause less side effects than the dopamine agonist pills as blood levels are smoother (less peaks and troughs) but they may still cause some problems. Only trial and error will tell you for sure.

Sent: Sunday, September 09, 2007 1:25 AM
Subject: RLS and many other problems?

I have had RLS and Fibromyalgia for 5 1/2 years. I have Bipolar II , I had open heart surgery in 2004 for valve replacement. Of course I take Coumadin which makes things even more complicated. To top things I am close to starting menopause.

My TOM is very hard on me and has made me anemic. I just started iron supplements. I took few pain meds with the fibromyalgia. I took Ambien and some Tylenol now and then. I had Fibro first and slept all the time. The pain was awful. I felt like someone beat me. I had TMJ, Headaches, tender points and so on. My daughter had Mono and then I got it but had a false positive from what I understand.

I began taking vitamins and exercising and the pain got better and I got my strength back. Then came RLS which I have had four years with insomnia. Ambien quit working no other sleeping pill has helped. I take heart meds., meds. for Bipolar, I am now taking Klonopin. I am weaning myself off Mirapex with Doctor's knowledge. So Klonopin and Darvocet are my salvation right now. I gained over 16lbs since trying Mirapex. Which has been about 6 months. Requip sent me into a emotional tail spin. I did loose a few pounds.

The Mirapex made symptoms of Fibro come back, My RLS seemed worse, then legs cramps hit. I can handle pain but this is real bad. Even the heart surgery didn't seem to hurt feel as much and I am serious about that. I do see a sleep specialist 9/19/07 I was tested the sleep study showed indications of RLS and insomnia. So they tell me.

This is all overwhelming, with my heart, insomnia, I feel very depressed,. I also have OCD. Believe me that's been increased. Even with taking Paxil for OCD. It's very hard to function on very little sleep, anemia, and to stay healthy. This all seems like it could affect my staying alive. My grandmother on my mom's side had RLS and maybe Fibro. My sister has it slightly. Even if there are no answers getting all this out is a relief.

Your case is obviously quite complicated so giving a simple answer will not be very helpful.

The Paxil that you are taking for OCD may be worsening your RLS but if you really need it then stopping the Paxil is not really an option. Dopamine agonists (Mirapex and Requip) do not seem correct for you despite that fact that some specialists recommend then for fibromyalgia.

Your best bet for your RLS are the opioids (Darvocet and perhaps stronger pain medications) with or without the anticonvulsants (gabapentin or Lyrica which is now FDA approved for fibromyalgia). Klonopin may help you get to sleep but increases next day drowsiness and fatigue.

Sent: Monday, September 10, 2007 3:26 AM
Subject: RLS and hip replacement?

I have written to you before but now need more help. My doctor put me on 2 mg Requip which I take 3 times a day along with Neurontin 300mg. I usually take this at 1:00, 6:00 and around 10:00 and this was working fine until I had a hip replacement 5 weeks ago and now the RLS has come back. I usually spend the nights walking and it is the same leg as the hip replacement. Do you have any suggestions for me? I really need to get some sleep.

You do not say whether the RLS is bothering you only at night or all day long too at this point. If it is only at nighttime, then you may benefit from an increase in your Neurontin to 600 or 900 mg for you 6 pm or 10 pm dose. If you have experienced an increase in the daytime symptoms also, you could increase your daytime Neurontin doses if that does not cause increased daytime sleepiness.

I would not increase your Requip at this point as you are already on a fairly high dose. You might consider adding tramadol or an opioid for further relief.

Sent: Monday, September 10, 2007 11:45 AM
Subject: More Requip for RLS?

I am currently taking Requip, and in the beginning started out with .5 mg with good success. It was very helpful in giving me a chance to sleep at night, and the resulting energy gain was something I was not used to for years. Since then (8 to 10 months ago) I have had to increase the dosages to the point they are today at 3 mg.

My symptoms have augmented , becoming more severe while awake, and now I have them in my arms too. I currently take 1.5 mg. at 5:30 at night to help alleviate the symptoms, then follow up with another 1.5 to help me get thru the night. I endure the symptoms during the daylight hours. ( generally coming on again around 11 am and continuing thru the afternoon.) My questions.

I have read that in some situations Requip has and can be taken up to 9 mg per day If I continue to increase my dosage, such as taking 1.5 mg. every 4 to 6 hours, will the augmentation likely continue?? or does it make sense to have my doctor increase my prescription up to a point where I can take the product at timed intervals to keep the symptoms away.

If I do this and the augmentation does increase, can I safely stop taking the drug, and immediately try something else, (such as Mirapex or another approach such as hydrocodone and soma... etc) or would I need to taper back slowly, and seek other alternatives. I am not asking for you to treat me, just offer some suggestions if you could , that I would be able to discuss with my local doctor. I am getting to the point where I am willing to try just about anything to relinquish these sensations.

You are definitely suffering from augmentation due to taking Requip. Increasing your Requip dose will result in temporary relief then increase your augmentation problems. Although the dose can be increased over 4 mg per day (the recommended maximum dose of Requip for RLS) this is only for rare cases that have not experienced augmentation.

At this point the best recommendation is to stop the Requip and change (at least temporarily) to an opioid. Vicodin may work but the more potent opioids such as oxycodone or methadone (my favorite but most doctors are not familiar or comfortable enough with this medication to prescribe it). Once your RLS is under control, you can add an anticonvulsant (gabapentin or Lyrica) so that you can reduce or eliminate the painkillers.

Sent: Monday, September 10, 2007 3:43 PM
Subject: Long term side effects of RLS medications?

I have been on 1600 mg of Gabapentin (800 mg 2x in the evening), and 2 mg Mirapex (1 mg 2x in the evening) for a few years. I have a severe case of RLS and lower doses of meds do not seem to work. My doctor refills my meds by phone and does not request to see me any longer (since my RLS is under control). Are there potentially any long term harmful effects from these meds at these doses?

Catherine

As far as we know, there should not be any long term effects of those medications.

Sent: Monday, September 10, 2007 4:06 PM
Subject: RLS and criminal charges?

I have had RLS for probably 20 years, but it was not diagnosed until about 10 years ago. It is also familial. My Grandfather died at the age of 88 in 2005 but by time he passed his was so bad it was being controlled by morphine lollipops. I myself have gone through all the benzodiazepines, all the Parkinson's meds, all the anticonvulsants, tramadol, and about everything else you can think of. I now am on MS Contin and Lortab, and it seems to be working. I don't have side effects usually associated with opiates; it just makes it so I am able to function. But getting to this point has been a long haul. I moved to Tucson, AZ about 3 years ago and my Dr. there was very good about the treatment and is actually the one who put me on this course of treatment.

Last Fall I had to come back to Utah and since then life has been a nightmare. I am in Cache County, in Northern Utah. I have not been able to get a Dr. to listen to me here, or even get on a web site and spend five minutes researching this. One even insisted that the advice "Dr. Gott" gave in his column for a bar of soap in your bed was the answer, I just didn't want to hear it (Dr. Gott was very clear that this is for nocturnal legs cramps, not RLS). I've had nothing but problems trying to find someone to treat me even when I have presented them with the medication contract that I had with my doctor in Arizona. After maybe a couple of months they would start giving me fits or dismiss me from their practice all together. A couple have even told me they're getting pressure from the State to not prescribe these medications. So, I've had to constantly find new doctors. Well, now they are trying to convict me of doctor shopping or something... it seems like it changes every time I talk to the attorney.

At this point I have come to the conclusion that I'll eat a criminal charge and spend a month in jail if it resolves the issue. The attorney and others have assured me that the judge has already made up his mind. My problem is that if I agree to this their feeling is that they do not need to give me my medication and will make me go off it permanently. I've tried to explain to them that once I'm off this my blood pressure gets dangerously high, my ability to concentrate and think is compromised, and I simply can not "sit still". They don't believe me. In fact, part of their premise appears to be that this RLS thing is something I've made up just to get drugs.

This is just a thumb nail sketch of the dilemma I have going on, but it is enough to give you an idea. Like I said, I do not know if there's anything that can be done to help at this point, but I posted a general request for help with research information that would be beneficial to me on the RLS bb and the consensus was that I should send this email. I would be grateful for anything you can offer.

SH

Your case is definitely one of the strangest RLS predicaments that I have heard. Certainly, doctors must be aware of patients who are drug seeking but for patients who are using legitimate doses of painkillers for a legitimate disorder (which RLS certainly qualifies), there should be no problem.

I would imagine that if you could have your medical records from your doctor in Tucson, AZ sent to you, it should document both your legitimate diagnosis and use of the medications to treat it. The only difficulty that you may encounter is that they could claim that you are "faking an illness to seek drugs" since RLS is purely a subjective diagnosis that has no objective medical findings or proof to corroborate the diagnosis. As such, if they have made up their mind that you are drug seeking, it may be difficult to prove otherwise.

There is a lot of medical literature (including my book) that supports the use of opioids for RLS but the judge must believe that you have RLS to warrant using those drugs.

Sent: Monday, September 10, 2007 4:39 PM
Subject: Light exercise triggering RLS?

Do you have any patients that even light exercise will trigger RLS? I was a runner at the time I was hit with RLS. I brought my ferritin from nearly 0 to 110 in 3 months with iron therapy. I had stopped working out completely about 4 months ago at about the same time. In the last few weeks, I have had virtually no symptoms. It was great! Then a few days ago, I decided to try walking. I did a flat 20 min. walk, not even brisk, just enough to raise my heart rate a little, and since then I've had RLS again.

I'm so upset. The thought of never exercising again is overwhelming and scary, but given the choice, I'd rather be RLS-free (even with my mild day only case) Is this possible, or could it be that I am just so out of shape, and it will eventually stop with regular walking?
I keep hearing that light exercise is helpful. I can't exercise much lighter!

Linda
Lakeport, CA

I have yet to hear that light exercise causes RLS. It may be that you are quite out of shape and that the light exercise if more of a stress to your body but walking rarely triggers RLS, even in older out of shape patients. Typically, regular exercise (walking) has been found to be helpful in female (the particular study was done only in females) RLS sufferers. Your case is quite unusual.

Sent: Tuesday, September 11, 2007 7:57 AM
Subject: Re: light exercise triggering RLS?

Hi, thank you, hopefully that's not it. Last night I also realized I had just started oral contraceptives 2 weeks ago, and I'm thinking maybe this is causing it instead. I also last night had a pain in my leg all night that felt RLS related, and I haven't had nighttime RLS in months.

I have a week left in my pack, can I just stop it without too much problem? I don't want to wait another week to see if this is the problem. My Nurse practioner is out of town this week, so I can't ask her. I just want this to go away again!

Hormones have been known to worsen RLS so it is possible that your new BCP may be the cause of your new RLS problems. Stopping your BCP will simply make you lose your protection from getting pregnant but you should check with your doctor before stopping them.

Sent: Monday, September 10, 2007 9:49 PM
Subject: Electrolyte Imbalance / RLS and Nighttime Urge to Urinate

I'm a 39 year old male in very good health and have certainly had RLS for at least the last 12 years, quite probably longer. From reading posts of others affected, I'm concluding that while I absolutely can't sleep without my single .5 mg dose of Requip a couple hours before bedtime (which I've been on for about a year - prior to that I just dealt with generally crappy sleep), I also wonder if my RLS is perhaps mild compared to some others here. Should that be the case, I'd very much like to try and treat it WITHOUT the use of any prescription meds, but ideally through vitamin supplements or the like. I recognize that no studies exist which demonstrate the efficacy (or lack thereof) of "electrolyte balancing" vitamins, but my questions are these:

If I do have an electrolyte imbalance, how would I figure that out? Assuming I do have an electrolyte imbalance, what 'cocktail' of vitamin supplements would you most recommend to correct it?

Finally, on a different matter, I continue to wake up at least four times a night with an urge to urinate (which I get up and do). Is this nighttime need-to-pee a common sideshow to RLS (i.e.., I wake up because of RLS, so my body thinks it's time to go to the bathroom), or could my RLS be under control while some other condition is responsible for jolting me out of my sleep?

Tom in L.A.

If you can't sleep without your Requip, then your RLS is moderate to severe, at least. Risking and living with severe insomnia is really not a great option so you should not consider stopping the Requip unless you have an equal (or really better) option that is proven to be effective.

It is extremely easy to find out if you have an electrolyte imbalance (this is a term used for non-medical consumers to make them want to buy supplements to correct a problem that they do not have). Your doctor can simply run an electrolyte panel (it contains your levels of sodium, potassium and chloride which are the 3 main electrolytes). This test is often done on a periodic basis as part of a more complete general health panel.

Vitamins do not correct electrolyte imbalances; they simply correct vitamin deficiencies created by not taking in enough vitamins through our diet. Normally the only way to get an "electrolyte imbalance" is to be on certain medications (typically water pills/diuretics), lose fluids through problems such as severe diarrhea or sweating or by consuming too much or too little fluids. Beware of advertisements that claim to fix your medical problems with "natural" remedies such as vitamins, minerals or electrolyte solutions.

RLS does not cause you to wake up from sleep as you can only be affected by the discomfort of RLS while awake. It is possible that the PLMS (leg kicks while asleep which are present in 85% of RLS patients) may be waking you up but Requip typically eliminates them. The PLMS can jolt patients out of sleep.

The need to urinate is only common in RLS patients whose symptoms prevent them from falling asleep and thus urinate more because they are awake.

Sent: Tuesday, September 11, 2007 9:33 AM
Subject: Rozerem for RLS?

I was recently diagnosed with RLS but I've been suffering for years. My doctor suggested Rozerem the sleep medication. Not only is it not working for my legs and arms but I'm not even sleeping at night. Do you know of anyone or any studies that have proven this drug to work for RLS?

Please help me understand?!
Jennifer F.

Rozerem is not an RLS drug. It is a drug that is meant to treat chronic insomnia. There has never been a single study examining its use for RLS and it has no role for treating RLS. While RLS symptoms are active, Rozerem has little or no chance to be effective.

The treatment of choice for RLS is Requip or Mirapex. They are both great drugs and the only two that are actually FDA approved for RLS. Your doctor should start you on one of these drugs (unless there is a good medical reason not to do so) or you should seek out another physician who can treat you appropriately.

Sent: Tuesday, September 11, 2007 11:48 AM
Subject: RLS in only one leg?

My husband is experiencing RLS symptom’s in only one of his legs, the left. Is it possible or even common to have these symptom’ s in only one limb or should we be looking for another origin/problem?

Rhonda C.

It is certainly not rare to have RLS in only one leg. Typically, this will eventually spread to the other leg and can even alternate (in the same day or on different days). Many RLS sufferers do experience symptoms on only one side of their body (and this can include their arms and torso) but as noted above it generally alternates although one side can be significantly worse than the other.

Sent: Tuesday, September 11, 2007 9:42 PM
Subject: RLS worse with Lexapro and iron for RLS?

I have had RLS since I was a child and I am 51 now. All of the comments from everyone is so exact it is wonderful to finally hear from other people what they are experiencing . People without the disorder just can't understand how miserable we are my RLS has gotten worse since I started taking Lexapro for my anxiety.

I finally had to stop the Lexapro it was driving me crazy. I get very depressed and have had panic attacks since I was 21. I also feel faint and very nauseated a lot. I do believe iron helps I am going to religiously take some iron for a week and see if my RLS gets any better I will let you know.

Before you take iron, you should have a serum ferritin level taken. Iron will only benefit RLS if your level is below 50. A week is way to short to determine if iron will help your RLS as it may take several months of high doses of iron to get your level above 50 (if you started out low).

Wellbutrin may help your anxiety and depression problems without bothering RLS like all the other antidepressants.

Sent: Wednesday, September 12, 2007 10:54 PM
Subject: Gabapentin for RLS in a dialysis patient?

My patient has restless leg syndrome and his doctor gave him gabapentin 100 mg per day. I want to ask if he can have two per day as he is a dialysis patient. Do you think exercise can help him as whenever he receive massage and start to walk around in the house with the help of walker he feel much better. But when ever he rest on the floor, the nerves go to sleep.

Typically, gabapentin is dosed between 100-300 mg per day for dialysis patients. This should only be altered by his dialysis doctor. Exercise often helps RLS.

Sent: Wednesday, September 12, 2007 7:36 AM
Subject: RLS not better with Sinemet and gabapentin?

I am 24 and was recently diagnosed with RLS well my doctor has giving me Sinemet and gabapentin and neither one of them have helped me in anyway but he tells me that the gabapentin is the best way well it is not reliving any of my pain and I can hardly sleep at night I had taken a friends oxycodone and that was the first time I have felt any relief from my symptoms

Requip or Mirapex are the drugs of choice (and the only FDA approved drugs for RLS). You should first try these drugs. Sinemet should not be used on a daily basis as it will worsen RLS with time (called augmentation). Gabapentin does help some RLS sufferers but generally high doses are needed (it is a second line drug for RLS).

If the above medications do not help then painkillers (opioids like oxycodone or tramadol) should help you as you have already noted.

Sent: Wednesday, September 12, 2007 8:24 PM
Subject: Re: RLS not better with Sinemet and gabapentin?

Thank you for your reply could the pain killers be used in combination with the other drugs to relive symptoms? I have I high tolerance for drugs and It seems as if nothing works for me. How can I get my provider to help me relive the pain in my legs? Also today my legs have felt like they are numb like a tingly feeling in my legs and I have pain that is unbearable also my legs have been twitching almost like a muscle spasm is that normal for RLS?

You can use the pain killers in combination with other drugs. We do that commonly for more severe cases.

The sensations of RLS can vary considerably. If your tingly and numb feelings and pain are part of your RLS they should appear only at rest and be relieved by movement.

I have had RLS almost all my life (57 years old) and had it pretty well under control with Requip and Klonopin. I just started Humira injections for my Crohn's and now my legs hurt so bad and the RLS seems to be worse now. I have had 4 injections so far. My question is could the Humira had made my symptoms of RLS worse? The pain starts in my hip and works it way down my legs.

Humira is a fairly new drug (it is a TNF or tumor necrosis factor blocker). There is no information yet available whether it can affect RLS. However, it does not appear to be similar to other classes of medications that worsen RLS but only time will tell.

Sent: Wednesday, September 12, 2007 6:27 PM
Subject: RLS not better with Requip?

I have suffered from RLS for 13 years now. And I am so tired of this. I have it so severe that it now occurs in my arms , and chest and torso as well as my legs. I take Requip but this does not do much for me. Sometimes my symptoms start as early as 1:00 or 2:00 in the afternoon. I can't sit and watch a movie I can't lay down to take a nap. Sometimes my body just jumps out on it's on. I take the 2 mg of Requip but if I take anymore than that it make me very ill and I throw up . I do this now about 3 times a month because it makes me fell so nauseated .

I stared off with Sinemet but was changed when I built an immunity to it. Do you have any suggestions? Is this anything that may be a time release to last through out the day then take something stronger at night? It would be so nice to go to sleep at night without having to drug my self up to do so.

Connie

You may be getting augmentation of your RLS caused by the Requip. Therefore, it may actually be better to go off the Requip rather than increase the dose or go on a longer acting dopamine drug (like Neupro which has just recently become available).

Alternative therapies include the painkillers (opioids or tramadol) or anticonvulsants (gabapentin, Lyrica, etc.). With proper treatment most all RLS sufferers should do very well.

Sent: Wednesday, September 12, 2007 8:14 PM
Subject: Carb/levo (Sinemet) & diabetes?

My wife is diabetic. Recently she began taking carb/levo for RLS. Since beginning this medication, her sugar levels have gyrated rather drastically and she has difficulty regulating insulin amounts. Does carb/levo medication have an effect on the sugar level/need for insulin intake.

Sinemet (carbidopa/levodopa) should not effect sugar levels. However, this is a drug that should not be used on a daily basis as it very often (over 85%) causes worsening of RLS (called augmentation). Requip and Mirapex are the only FDA approved drugs for RLS and are also the drugs of choice to treat this condition.

Sent: Thursday, September 13, 2007 7:57 PM
Subject: Spinal Surgery and RLS?

My mother has had RLS since 15. She is now 79 and is contemplating lower back surgery for spinal stenosis complicated from degenerative disc disease. She is still able to walk but only for short periods due to severe pain in buttocks and sharp pains in upper legs. The neurosurgeon has given her all of the dangers of surgery but feels this is her only resort to not having to live in a wheel chair the rest of her life and living with intense pain while walking.

She feels life has nothing to live for if she has to live like this but someone told her RLS may get worse if she has the surgery. She is able to control it with Sinemet and one other medication. Do you have any other recent data sine 2002 on surgery complications with RLS.

There is actually no scientific evidence about surgery worsening or triggering RLS. We do have lots of anecdotal reports of RLS worsening or starting after surgery (especially spine surgery). Despite the many anecdotal reports, this may still be a sporadic phenomenon and not something that occurs regularly. This clearly needs to be studied in a systematic scientific fashion.

Until then, I would suggest that your mother go ahead with her surgery as the risk of her pain and being wheelchair bound far exceed the risk of increased problems with her RLS. Furthermore, there are many more ways to treat her RLS that should be able to take care of possible increased RLS symptoms.

Sent: Friday, September 14, 2007 7:40 PM
Subject: Ultram side effect of sexual dysfunction?

Because I saw another email and a RLS sufferer and a med he was taking causing a sexual malfunction, I am attempting to bypass my own embarrassment to ask my question. I am female, 70, RLS sufferer taking 1- 50 mg. Tramadol per night (been taking for about 6 years) allowing me to get a pretty good sleep at least 85% of the time. However, I have a lot of difficulty reaching orgasm at night (after taking the pill), whereas, in daytime I don’t have the problem.

What is the deal with the tramadol? And no, I don’t really want to change medications because have tried Requip and Mirapex and both me hideously sick.

Although tramadol has not been associated with sexual dysfunction, it is always possible that any given individual may experience almost any side effect. You may want to try an opioid (Vicodin, Darvon, etc.) and see if this works as well. You could use an opioid safely every night or if you prefer, only on those nights when you wish to avoid sexual dysfunction.

Sent: Friday, September 14, 2007 9:07 PM
Subject: Requip and weight gain?

Does Requip or Mirapex cause weight gain?

They may cause weight gain. Often this occurs due to edema (fluid retention that is usually noticed in swollen feet/ankles).

Sent: Saturday, September 15, 2007 3:00 PM
Subject: 24 hrs and more....

I am desperate for help! I have been on Requip, Neurontin, Mirapex and Sinemet all. eventually...to no avail. My legs are so severe that within weeks all these meds seemed to augment, and things just got worse, now nearly 48 hrs ago the leg muscles began spasming like mad and did not stop, I went into the ER after filling myself with any pills (nearly too many) I could find hoping one might put me to sleep. At 7 am I gave up and went I was given a muscle relaxant, no help, Toradol, no help, and finally a Lortab which helped briefly enough for me to go home and get some sleep, but a few hrs later my legs are right back at it jerking and spasming!!

I am terrified as docs say they are reaching the end of their rope, I Know I would choose suicide over going thru this agony every night!!! I am completely worn to the bone and my quality off life is at 0. what do I do If narcotics only make a dent in these maddening twitching and spasms???!! I have never been so scared of anything before and plan on starting with a new neuro as this one was treating me for "mild to moderate" RLS when it is clearly over the edge severe!!!!

But what might he do If no one else can seem to help, someone tell me there Is SOME HOPE for me!!!! this is a wonderful time in my life and it is all going to hell because of these 2 legs!!?? and my inability to sleep or to sit still at all. The neurologist I have is not very driven to help and just keeps handing out new meds and saying call in 6 weeks when they either don't help at all to help for a couple weeks and then...nothing...do people like me just fall thru and eventually just lose it? I so feel like that's where I am at.....

You clearly have a severe rather than mild to moderate case of RLS. Typically, narcotics are the major drugs to treat your type of RLS. For my patients, I usually would recommend methadone or some equally potent opioid. That should settle your RLS nicely. You might then add other drugs like Lyrica to see if you can decrease your opioid dose.

Sent: Sunday, September 16, 2007 12:30 PM
Subject: Restless legs bothered by pills?

Dear Sirs: I am using Requip for my restless legs, but it looks like I need more than 2 mg a day now. Have you heard of that Exelon (memory pill) and
Vesicare (Bladder control pill) new medication, could have a worse impact on RLS?

I know of no reports (in the literature or anecdotal) that indicate worsening of RLS with either Exelon or Vesicare. However, anything is possible. If your RLS is getting more intense, occurring earlier in the day or spreading to other body parts, you may be experiencing augmentation from the Requip and increasing the drug may possibly lead to worsening of the problem (if it is just a mild increase in your symptoms then increasing the Requip may be fine).

Sent: Monday, September 17, 2007 4:54 AM
Subject: re-Mirapex

Thank you so very much for your great website!! I have been on Mirapex for about 6 years I now take .5 at 4 PM and again at bedtime. I also take Ultram 100 mg at bedtime. This combination has been working great for about 1 1/2 years but lately I have been really "jittery" (RLS) in the evening and I wake up about an hour after going to sleep and cannot get back to sleep due to RLS.

I am not sure why you are having trouble after being stable for a year and half. One possibility is that your disease is worsening and thus needs more medication. Another likely explanation is that something new is worsening your RLS such as a new medication, low iron levels, etc.

If you cannot find something new that is provoking more symptoms then you may want to add gabapentin or Lyrica to your medication regimen as you are already on high doses of Mirapex and Ultram.

Sent: Tuesday, September 18, 2007 12:24 PM
Subject: RLS or something else?

I suffer from agonizing groin spasms. Requip relieves the spasms, but they definitely resonate from the groin as if I need to urinate or even as if I am in a constant state of sexual stimulation for no apparent reason. Does anyone else experience RLS in this fashion? My father does, but everyone else I hear talk about it says it's like a creepy crawly sensation in the legs. My legs are not affected by this condition at all.

RLS can definitely affect the genitals. However, before the RLS symptoms extend to other regions (such as the genitals) they must first appear in the legs. Therefore, it is very unlikely that your symptoms are due to RLS. Furthermore, walking relieves RLS symptoms anywhere in the body.

Sent: Tuesday, September 18, 2007 8:28 PM
Subject: RLS & depression

Please help me with the following question. I am a 59 year old woman and have had RLS for all my adult life. It has worsened since menopause. I combat it through daily weight-bearing exercise. Recently I have been coping with depression brought about primarily by a stressful relocation. My RLS has worsened markedly. I also seem to be having what I call 'flash' hallucinations while falling asleep. I do not take any medication other than ibuprofen, which helps me quite a bit with the RLS.

Is RLS connected to depression? Also, is RLS connected somehow to these 'flash' (momentary) hallucinations? I do hallucinate on codeine.

RLS is not associated with hallucinations while falling asleep (called hypnagogic hallucinations). The stress you are experiencing may actually be a cause of this problem.

RLS may cause depression when it produces significant disruption of your life....such as insomnia, inability to function during the day, etc. Most medications that treat depression tend to worsen RLS.