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Sent: Saturday, August 13, 2005 5:03 PM
Subject: Nerve Damage?
Thank you for this site. Like others, I am immensely grateful for the validation you provide.
I am a 70-year old woman who had a successful right-hip replacement last October and, under morphine, had awful and maddening RLS, hallucinating that a train was running up and down my legs. In April I had my left hip replaced and during the surgery suffered a stroke that affected my left side. I am recovering well except for a real obstacle to the necessary exercises: horrendous pain in my thigh when I lift my leg. So far a series of doctors and therapists has been unable to determine the cause of the pain or relieve it.
I believe my pain comes from an entrapped obturator nerve because it is described pretty well in articles about athletes getting groin pain from a damaged obturator nerve. But the pain management doctor I saw three days ago prescribed Skelaxin--a muscle relaxant--a product that RLS veterans know worsens RLS, which it did--and Ultracet (which I haven't taken yet) despite my best efforts to enlighten him about how the pain developed. Perhaps it will interest RLS sufferers who may help me figure it all out.
A couple of weeks after the surgery I fell and dislocated the new hip. On my way back to the hospital from the rehab hospital where I had been taken, I had what I called RLS, but which may have been something else: my big toe, then my foot (left leg only), would jerk and strain back and a wave of spasms would travel up into the area of my hip flexor muscles. These wrenching spasms kept occurring. A young man riding along in the ambulance kindly held my foot with both hands and when it started to spasm, he would hold it straight. This helped a lot. Fortunately, on the trip back there was another person to hold my foot because the spasms kept happening after the femur was replaced (by brute force) in the socket.
The neurologist who saw me after the stroke was "discovered" following the surgery two weeks before had prescribed Requip for my restless legs syndrome--a blessed relief (I had given the surgeon 17 pages from the Internet, but he did nothing about treating me before the operation because he "didn't know about the drug or the disease and didn't know whether an RLS drug would interfere with drugs" he was giving me). I had not yet gotten a therapeutic dosage at the rehab hospital, so the spasms had free rein.
Bottom line: I had what felt like a nest of vipers at the top of my leg where the spasms ended. This was a very painful place that hurt when I lifted my knee. Now, four months later, the pain has spread through the inner top of my thigh, extending down to my knee. As I sit here typing, it is throbbing because I did some walking at lunchtime.
One physical therapist said he thought the pain derived from the stroke--that the left side of my body had "its own case of RLS."
Can you explain the involvement of my toe and foot in the spasms and guess what I'm dealing with?
I have no explanation for your leg spasm. The spasm does not sound like PLM associated with RLS.
Skelaxin (metaxalone) is not known to worsen RLS except if it causes drowsiness. Otherwise it is not in the chemical family of drugs that exacerbate RLS.
Sent: Monday, August 15, 2005 4:43 PM
Subject: RLS and MS
I am a 39 year old female that was diagnosed with MS 17 years ago. I went to the neurologist today and described to him again today the problems that I have been having with my legs. They hurt every night and always seem to be on fire. My husband says he can use them as a heating pad.
He has prescribed Mirapex but after reading everything on the site I am afraid of the insomnia. Do you see many patients that have M.S. and RLS? My mom has RLS and he said that some studies show that it may be hereditary.
Your comments would be appreciated,
If your leg problems are similar to above description then you likely have
RLS and if they are different then you should look for another diagnosis to
explain your problem.
Mirapex can cause insomnia but more commonly causes sleepiness. The only way to find out what side effects may occur in you is to take the pill. Most patients do not have these side effects at all.
RLS occurs in about 10% of the Caucasian population so we can expect to see this disorder in about 10% of the Caucasian MS patients. I have personally seen a few patients with both diseases. About 60% of RLS patients have a family history of the disorder which definitely proves that this is an hereditary disorder.
Sent: Tuesday, August 16, 2005 3:14 AM
Subject: Falling apart!
I am sitting at my computer at 5am reading up on RLS and have found your site very informative. I do have a few questions, though.
It seems that sometimes the only relief I can get is by actually tucking my legs beneath me and sitting on them for awhile or by punching them repeatedly. Even then, it's iffy. I've been experiencing RLS for a few years, now (I am 36) and recently my arms have joined in the fun!
I take Tylenol #3 on a regular basis for an unrelated problem but have tried taking one at bedtime. Codeine, unfortunately, has a tendency to wire me up, not tire me out like it does to most people. So, I try to use it minimally at night. It didn't work. This is all very frustrating. Even now, after having been sitting up for an hour, it is still happening. Nothing is helping. Fortunately, my husband sleeps like the dead so not much wakes him up. It has gotten really bad recently and would really like to stop it.
I can tell you Xanax doesn't help
for me. I took one before bed tonight and here I am. Since I am already on
several medications you have suggested, what do you think my next move should
If you have not already tried them, Requip and Mirapex are the drugs of choice for RLS. Take them 1-2 hours before bedtime and you should not be bothered by RLS (once you get to the correct dose) throughout the night.
Sent: Tuesday, August 16, 2005 11:02 AM
Subject: Can you cut the Requip pill?
My Mother just got a prescription for Requip for her RLS, and she is only supposed to take half a pill. We tried cutting it, but it's shaped like a flying saucer so the bump in the middle prevents it. We took them back to the Pharmacist and he said "Can't help you". Bought a pill splitter and that doesn't work. This looks to me like the drug companies trying to make it harder for us to save money by taking half a pill. Other than that, Requip works great for her when nothing else has.
Can you help?
The Requip pill is definitely very hard to cut in half.
However, many RLS patients seem to be able to accomplish this task. Whether they
have advanced surgical cutting skills or access to a dissecting microscope is no
known, but they do manage to cut the pill in half. Unfortunately, the Requip
pills are not scored which would make cutting it in half very easy.
I will post this on our website to see if we can get further insight from those who have successfully cut their Requip pills in half.
Sent: Tuesday, August 16, 2005 11:36 PM
Subject: RLS and pregnancy?
I have had RLS since the birth of my first child. I am now pregnant again and have about 10 weeks left to go. Before the pregnancy I was on Mirapex which seemed to help a lot, but during the pregnancy I have gone off all medications. I am high risk, with heart problems and history of blood clots and do not want to take any additional chances.
I am trying to hang tough but each night the RLS gets worse...I am only
sleeping a few hours (if that) a night and it takes hours to fall asleep. My
question is if there is any type of solution that will help even a little during
these last few weeks.
The only solutions are drug related ones. Methadone is fairly safe for pregnancy but must be stopped late in pregnancy to prevent neonatal withdrawal syndrome and respiratory depression. Ambien is safe to use to help you get to sleep. Cabergoline (Dostinex), is a dopamine agonist similar to Mirapex and is safe and effective. It is rather expensive, however.
A Reply from Karen
Sent: Wednesday, August 17, 2005 1:02 AM
Subject: Re: RLS and pregnancy
Thank you for the information. One other thing I forgot to ask....I have seen the reports about low iron possibly being a factor but has their been any link with low folic acid. Thanks again-
There have been links but these are still not well understood. Pregnant women should make sure that their folic acid and iron intakes are adequate.
Sent: Thursday, August 18, 2005 9:22 AM
Subject: Muscle jerks
Ive talked to my primary physician about this and he seemed to shrugged it off to getting older and didn't seem too interested in giving me any answers to satisfy me. This happens when I lay down to fall asleep. It happens right at the moment my mind wants to fall asleep-something on my body jerks me awake. For example my ankle, wrist, back, stomach or temple muscles jerk just once.
Then I try and fall asleep and it happens again. Then if I wake up in the middle of the night and I almost fall asleep again the jerking starts for a moment. It even happens when I try and take a nap in the afternoon. It happens only at the point when I'm almost asleep. And it happens every day.
I just turned 50, am in great health except for being overweight. I do suffer from ringing in both ears. Ive had that for about the last 10 years. Is there something that I should be pressing my doctor to look into? Id really like to see if there is something medically he should be looking for and to see if there is any medications that would help this. Thank you for any help possible. This is very frustrating.
You likely have hypnic jerks which occur in the transition to sleep (stage 1 sleep). Everybody has these but some people have them more often. This is not well understood. There is no special treatment available.
It is possible that you have PLMW (Periodic Limb Movements during Wake). These can be treated but you would need a sleep study to diagnose this problem. Only if your problem is disturbing enough so that you would take medication to treat it, should you push for a sleep study to diagnose it.
Sent: Friday, August 19, 2005 7:19 AM
Subject: Ferritin levels in children?
I've read what the ferritin levels for adults should be, but are those the same guidelines for children? I have a 2 year old with RLS (I have it as well), and her ferritin level is 30. Her pediatrician read http://www.rls.org/publications/documents/ChildrenRLS2005.pdf and feels it should be at least 35. I am unclear what an optimal level would be for a child with RLS and have been unable to find any info to pinpoint it.
I would appreciate any help you could give me in this matter,
A ferritin level of 35 is the goal for children as determined by Dr. Dan Picchietti (who is one of the experts in pediatric RLS). However, as you child is very close to that goal, it is much less likely that raising the level will improve the RLS. When the initial ferritin level is much lower, the chances are better that treating it will result in improvement.
It has been working for me for the past two weeks. My husband usually wakes me nightly to tell me that my feet are racing and that I am keeping him awake. I didn't tell him about the bar of soap as he would have thought I was crazy for trying. I did ask him today if he had noticed my legs kicking in the last two weeks, and he said no. I still haven't told him what I did as I want to give it more time to work, to see if it keeps on working. I don't know if this will work for others with RLS, but I did want to pass on the info to them so they could try it for themselves.
P.S. I used a new bar of Coconut Oil Soap that I wanted to try. I'm sure any type of bar soap should work. Why? I don't know, but it so far is working for me.
Sent: Monday, August 22, 2005 12:13 AM
Subject: Mirapex not helping RLS during menstruation?
I am a 48 year old woman who has suffered with RLS for many years . A few years ago I discovered this site, got on Mirapex, and as a result I have been much more comfortable. I take 0.25 mg a night and for most of the month I sleep pretty much like a normal person. I find however that the week before my period is torture.
It is 4 AM right now and my legs are driving me crazy. So far tonight I have gotten up to take 2 Advil and about an hour ago I took another Mirapex. What should I be doing to get through these few days every month??
Thank you for your help in the past, getting on Mirapex changed my life.
Many women with RLS find that their symptoms worsen with menstruation. After obtaining approval from your doctor, increasing the Mirapex to .375 or even .5 mg (you may have to experiment a little) on the nights of that bad week should resolve the problem.
Sent: Monday, August 22, 2005 9:36 PM
Subject: Does serotonin help RLS?
Do you think there is a connection between serotonin and Restless Legs? I know Ultram is a reasonable choice of medication for RLS (works for me) and I also have heard that Ultram works with the serotonin in the brain.
What is your opinion on this?
The mechanism responsible for Ultram (tramadol) effects on both pain and RLS
are almost completely unknown. I have not yet heard any speculation about Ultram
working through the brain's serotonin system.
However, drugs that increase serotonin, such as the SSRI's (Prozac, Paxil, Zoloft, Celexa and Lexapro) all tend to make RLS worse.
Sent: Monday, August 22, 2005 5:49 PM
Subject: RLS worsened with tarsal tunnel and both better with Mirapex?
I'm 38 and have primary RLS. I have had it since I was a child. My dad has it, and my son has it.
Mine was just annoying most of my life, but I had a bad accident about 10 years ago and developed an osteochondral defect in my ankle (that's like a hole in one of the bones) and also tarsal tunnel syndrome. I understand that my nerve studies with the tarsal tunnel syndrome are quite bad. I know that it hurts like crazy!
Anyway, I had to quit my job - I was miserable night and day and could hardly walk. I was angry too - I was not medicated enough for the pain I was having, and started begging for pain meds from my family members at times. I'm not a druggie and wondered at times if I was turning into one. I was given Ultracet but it didn't work. I would often wake up crying at night. I only took Tylenol with my C-Section but this - this monster was killing me. At times I felt like the muscles were pulling off my bones. All this happened after I spent a long time in a cast for the tarsal tunnel. The cast didn't help, and my RLS seems to have mutated into a monster at that time. It went into my arm, lower back, right hip, thighs. It was day and night, with mornings being the only time I felt ok.
Anyway, I got a great neurologist who recognized the symptoms of RLS - I couldn't really walk like most sufferers do to relieve my symptoms due to the ankle problems - but I'd stretch and stretch. He figured it out. He put me on Mirapex.
Now, strange thing is, it worked since the first dose in a way I'd never have dreamed. Not only did it help my RLS, but my tarsal tunnel pain is 300% better in itself! I rarely ever take pain medication now, and when I do its just tramadol but and at times a Tylenol will do. I see so many other folks with tarsal tunnel that have RLS. I wonder if they don't exacerbate each other. For me, before the Mirapex, it was like the two pain problems were feeding each other, and it was a real monster.
I now take 1200 Neurontin, .375 a day of Mirapex, and sometimes a Tylenol or a tramadol. I have some of the Lidocaine patches too, if I ever have to do any more walking than usual. Its working, knock on wood!
I am scared to have the tarsal tunnel surgery. I am afraid I will climb the walls if immobilized and just go ahead and shoot myself. I'm serious about that- it would be like deciding to be tortured for weeks on end for me. I've decided against the surgery. Best to just bite the bullet and keep the RLS under control and deal with the foot without the surgery, I think.
It is very common for painful conditions to worsen RLS and vice versa. Why
this occurs is not fully understood but it may be due to increased anxiety
levels from your different sources of discomfort. Thus, when you improve one
condition you may also help the other.
Mirapex should not directly help the tarsal tunnel pain. However, Neurontin which helps tarsal tunnel pain also helps RLS.
If you do decide on surgery, you should be able to get through the post operative period easily if your doctors prescribe sufficient painkillers (narcotics at first then tramadol). You should not be afraid to have your surgery if it is necessary. Just make sure that your doctors are educated on RLS and surgery (you can even give them the RLS Foundation's brochure on the topic) and you should not have to worry.
Sent: Tuesday, August 23, 2005 5:16 AM
Subject: RLS and Fibromyalgia
Iím due to see a Neurologist for the first time in 2 weeks. I am taking 1mg clonazepam and 30 mg Baclofen at night for my legs. These meds are not working, no matter how tired I am, I still walk the floor at night. I usually end up taking 5 mg Valium but the next day Iím like a walking zombie and getting nothing done. I dread going to bed every night!!
My morning meds are, 150mg Effexor XR, 20mg Lipitor, 25mg D.H.E.A, 25mcg Thyroxine, Premia 2.5 continuous and 30mg Zoton.
Iím at the end of my rope and hoping you can help me as I want to go to the neurologist well armed with some information.
It is quite likely that your Effexor XR is worsening your RLS. A change to
Wellbutrin may be quite helpful.
Baclofen does not help RLS unless it puts you to sleep (an unwanted side effect). Clonazepam at 1 mg is a strong and long acting (40 hours or longer) enough benzodiazepine to make you sleepy but when you add Valium (another potent benzodiazepine) to it, you are really looking for trouble (like being a zombie all day). These drugs generally do not help the RLS symptoms but rather just help you get to sleep.
The treatment of choice, at least here in the USA, are Mirapex and Requip. It is very likely that one of those medications will resolve your RLS and avoid your current side effects.
A Reply from Gayl F.
Sent: Wednesday, September 07, 2005 4:07 AM
Subject: RE: RLS and Fibromyalgia
I saw the neurologist today and he has put me on 1mg of Cabergoline (Cabaser) to be taken in the mornings. I also have to take 600 mg of Neurontin at night. I suggested Wellbutrin or Mirapex but he didnít seem interested.
I have to see him in a month, but in the mean time I have to take the new meds as well as the old ones and then heíll start taking me off some of the old ones. He also knew that Effexor XR made RLS worse, but I still have to take until I see him again.
Cabergoline (Dostinex here in the USA) is a very reasonable drug for RLS. It is
actually similar to Mirapex or Requip but has a much longer half-life (over 65
hours compared to 8 or 12 hours for Mirapex or Requip). This allows it to be
dosed once a day. The drug is very expensive here in the USA as it is only
indicated in much lower doses for pituitary secreting prolactin tumors.
Neurontin is also a very reasonable RLS drug. It does cause next day hangovers in some patients. However, you may still want to work on having him take you off of the clonazepam slowly so that your daytime function will improve.
Sent: Tuesday, August 23, 2005 12:48 PM
Subject: Help with insomnia?
I am so thankful to have come across you on the Internet! I sure hope you can help me. I have had Restless Leg Syndrome for about 25 years, after trying MANY different approaches, I came across an add about Requip on the Internet and mentioned it to my doctor. He gave me a prescription and I take it 1 to 3 hours before bed, it works great, but I still have trouble getting and staying asleep. My doctor, then put me on Lexapro for anxiety and Lunesta ( a new sleep drug ). I am taking 3 mg ( that's as high as it goes) of the Lunesta. Well, I might as well be taking a sugar pill. It sometimes takes me 4 or 5 hours to fall asleep, that's if I do at all.
I am taking 10 mg. of Lexapro. The reason for the Lexapro is, I told my doctor about the anxiety I feel over not getting a good nights sleep for years. I also take Atenolol, 25mg. and Zocor 40 mg. My husband is taking Klonopin and he say's I should try Klonopin for sleep, instead of the Lunesta. I am concerned about interactions. I have not yet talked with my Doctor about this, thought I try you first.
PLEASE, respond quickly, I am desperate!! By the way, I take 0.5 mg. of Requip.
Royal Oak, MI
Firstly, you may want to discuss with your doctor about dropping the Lexapro
as all SSRI's tend to worsen RLS. Lunesta is a very good drug but if it hasn't
helped, then consider trying Ambien. It that does not help, then other choices
would include benzodiazepines, such as Klonopin.
I personally do not like to prescribe Klonopin as it has a half-life of 30-40 hours which mean that it will still be active the next day and may cause daytime sleepiness. Shorter acting benzodiazepines such as triazolam or temazepam (somewhat longer acting and takes longer to kick in, like about one hour) are preferred. You should only use these medications 3-4 times per week which should eliminate any concerns about addiction (which occur with the benzodiazepine sleeping pills but not with Ambien or Lunesta).
If all the above does not help, then trazodone (an RLS friendly antidepressant) at bedtime may be helpful and is not addictive (but may cause some next day drowsiness).
After stopping the Lexapro, you may want to see if .decreasing to .25 mg of Requip takes care of your RLS (the lower the dose, the better).
Medical A Reply from CG
Sent: Tuesday, August 23, 2005 9:25 PM
Subject: Help with insomnia?
Thank you for responding so quickly, I sure do appreciate it. I did try the Ambien, it worked well, but my doctor will only give me 20 pills at a time and he does not want me on it for a long period. The Lunesta is not suppose to be habit forming. I also have tried Xanax, which works well, also, but again my doctor won't give me a prescription because it is habit forming, I have taken my husband's Xanax, I know that's not the right thing to do, but I was desperate to sleep.
So, do you think, even though the 0.5 mg of Requip works well, I should consider the .25 instead? Sense I started the Requip, my legs NEVER bother me at night, sometimes during the day, but very slightly, and I have no trouble just walking it off. When I go to bed, I can be very tired, but it is like my body just can't relax, my mind race's.
We do have some stressing issues going on in our family, one of the reason's my doctor gave me the Lexapro. I only took 1/2 of one today, I understand that you should never just stop, that you need to sort of wean yourself off slowly. Is this true? The Klonopin kind of concerns me too. Would it help to only take 1/2, and does it tack time to get into your system, like Lexapro does?
You have been TREMENDOUSLY helpful so far. Your Web site is truly a God
Although only Lunesta has been had long term studies to prove that it is not addictive, their is a wealth of experience with Ambien over the past 15 years or so that have convince most specialists that it also is not addictive. I have had patients taking this drug on a daily basis for years without problems. Unfortunately, this drug (along with every other sleeping pill, whether or not they are addictive) are listed as possibly habit forming and doctors are warned not to prescribe them for over 2-3 weeks.
Xanax acts longer than temazepam and is also a benzodiazepine. I tend to avoid prescribing the benzodiazepines for sleep as the non-benzodiazepines are so much safer. My advice is to stay away from that class of drugs and ask your doctor for more Ambien.
All SSRI drugs, such as Lexapro should be tapered slowly. However, if you have not been on the drug for very long and on a low dose, this may not be necessary.
If you have not yet tried .25 mg of Requip it is certainly worth a try. If that amount does not help then you can simply go back to taking .5 mg. Less is always better, if it is as effective.
Sent: Wednesday, August 24, 2005 2:13 PM
Subject: Antidepressants query
I've been on Sifrol (Mirapex) and Requip (not at the same time, of course) for about a year and a half. Started Sifrol (Mirapex) with a quarter of a 0.18 mm pill = approximately. 0.05 mg. For a couple of months it worked but gradually I had to increase it to half a pill = 0.09 mg. However, although the legs were kept in check, I still couldn't sleep. Switched over to Requip, first 0.25 mg, then 0.50 and in the end, needed 0.75 mg, always taken 1 hour before bedtime.
The problem continues: I cannot sleep. I've gone through various Benzodiazepines but they only work for a couple of nights and then start to loose their effect. And I am loath to increase the dosages indefinitely, especially as one feels like a zombie the next day. Am presently taking 3 mg of Bromalex (Bromazepam) and get 4-5 hours interrupted sleep and am tired the next day.
Ambien only gives me 3-4
hours max. of sleep plus it seems to upset my stomach which has always been my
weak point and I suffer from acidity and heartburn practically all the time.
Questions: Since I'm now diagnosed with a gastric ulcer and do not have
Helicobacteria Pylori, could it be that Requip and/or Sifrol causes the stomach
Also, if it is Sifrol or Requip that causes the insomnia, there is only one way to find out: change medication. (Trying to sleep with no medication for the legs keeps me up walking for 10 minutes once every hour throughout the night, so that is no option). So what medication should one try for the legs that might not cause insomnia and stomach acidity?
Am not against trying antidepressants since 5 years without sleeping a single night properly would make anyone depressed. Problem is, Wellbutrin is not available in Portugal where I live - neither is trazodone. Might try to order on the web. In your answer to a query dated 24.06.05 you wrote that desipramine which is a tricyclic type, would be OK and not bother the legs. Yet in the list of general information about antidepressants on your web page it says that "the oldest antidepressants, the tricyclics, tend to worsen RLS more than they help." How am I to understand this, or is desipramine some new type of tricyclic which would be OK for the legs?
Thank you very much in advance for your clarification and guidance,
It is hard to imagine that such a small dose of pramipexole (Mirapex or
Sifrol) could cause insomnia. Of course, anything is possible. It is also
possible that your insomnia may be conditioned from years of not sleeping well
due to RLS. This conditioned insomnia responds slowly but well to behavioral
therapy and may at times respond erratically to medications (such as in your
You are right, it may be very difficult to find out whether your insomnia is due to the medications or something else. However, you could take a narcotic to control your RLS symptoms (which should work well) and then see who you sleep.
Mirapex and Requip should have no effect on your stomach or gastric ulcer problems.
The information on desipramine is fairly new. Although this is an older tricyclic antidepressant, it belongs to the secondary amine subtype. The secondary amine drugs (also includes protriptyline and nortriptyline) do not stimulate serotonin as do the other tricyclics which may be why they do not bother RLS.
A Reply from Maikki S.
Sent: Thursday, August 25, 2005 5:28 AM
Subject: Re: antidepressants query
Thank you SO MUCH for your prompt reply and please excuse me for pestering you once more - my local American doctor is away on holidays and being a GP, he has not got your waste experience with RLS. He prescribed Citalopram about a month ago, to see if I'd start sleeping better, on the presumption that a depression would be the reason for my insomnia. I only took one pill and it gave me pretty bad nausea, and stupidly I should have checked before buying it - I then found out that it is on your list of those antidepressants which are no good for RLS.
Have just returned from the chemist with 100 mg tablets of Trazodone HCI DCI as
this appears in your info as not harming the legs. And to my delight I also
found on the web that Trazodone is also used as a sleeping aid. So am I correct
in presuming that taking one 100 mg pill at night (together with the Sifrol)
will help both my sleeping and the depression?
I have also heard that massive doses of vitamin E would help with RLS - is there any truth in that?
Most doctors start trazodone at 50 mg and then work up higher as necessary.
The lower doses of this drug are sedating but most often, 100-200 mg are need
Vitamin E should not be taken in massive doses for anything and there is no scientific link between any dose of Vitamin E and RLS.
Sent: Sunday, August 28, 2005 5:04 PM
Subject: RLS confused with Multiple Sclerosis
I have had RLS since I was 17, back then, I am now 56, no one ever heard of it. I was 8-1/2 months pregnant, alone in a neurologists office and he told me I had MS.!!! So for 10 days I got shots that were the going thing for MS., then for 20 years feared I would awake in a wheel chair.
Later even went to Syracuse for another opinion and they couldn't disprove MS. I had a lot of the other symptoms of MS, like depression--of course--no sleep-who wouldn't be depressed? So anyways, another neurologist here listened to my story again and ruled out MS and helped me with RLS. I have no pictures, but some ideas I came up with did help and I would like to share them.
We will post your RLS story on our website so that others can be aware of how RLS can be confused with MS. Feel free to share other ideas or problems that you think others would benefit from.
Sent: Monday, August 29, 2005 4:58 AM
Subject: Mirapex and insomnia
I have been using .125 mg Mirapex at 9:30 pm for about 9 months. This controls my RLS beautifully. However for the past two months I have been unable to sleep. I "fall" into sleep at about 11:30 pm and about every other night I start to "fall" asleep and I wake up instead of falling asleep and am wide awake and unable to sleep for the whole night. It is like there is a light on in my head. I did not have this problem before. Could it be from the Mirapex?
If my Dr. switches me to Neurontin can I just stop the Mirapex, since I am on such a low dose, and start the Neurontin?
Also, until I see my Dr. can I take Xanax with Mirapex to help with sleep?
It is certainly possible that the Mirapex may be contributing to your insomnia. Xanax may help with the insomnia but you must check with your own physician before taking this medication for sleep.
Neurontin may be a good choice as it rarely causes insomnia but rather causes sleepiness as a side effect.
Another choice is to change the Mirapex to .25 mg of Requip which may help as well as the Mirapex but may not have the same side effect of insomnia.
Sent: Monday, August 29, 2005 2:00 PM
Subject: need some SLEEP
I was reading about magnesium and calcium supplements. Could you give me more info on this and if it does help. I would really like to get off all drugs! I have not slept through the night in a long time. Gee, it would be like heaven just to sleep like normal people do. It is starting to affect my mood and I don't want to go into my depressions again due to sleep deprivation.
I also have fibromyalgia and Crohn's disease. Does anyone have any
other suggestions to help?
It is the hope of most patients to get off all drugs and just take more "natural" substances like magnesium or calcium to help their RLS. Unfortunately, very few RLS benefit from these natural therapies and there is little evidence in the literature to support their use. Occasionally we hear from patients who state that they have benefited, but most do not.
You may consider changing to Mirapex or a different class of medication such as Neurontin. One of these should help you. If not, let us know.
Sent: Tuesday, August 30, 2005 12:28 PM
Subject: Treatment for RLS
I was diagnosed with RLS about 6 weeks ago, my doctor prescribed a low dose of Mirapex taken once a day before bedtime and I'm getting a great nights sleep after 10 years of waking up and walking all night.
I told her she was my savior. I don't know how long I can keep taking this medication, but so far I have had no side effects that would make me quit taking it? is anyone else out there taking Mirapex for their problems with RLS?? Let me know if you know of any long term problems with it.
I will say that I have to take this medicine religiously and always at the same time every night, so it has meant making a few major changes to my life style. I think it's worth the good night of sleep I get. By the way, I am 55 years old and have been having problems with RLS for at least 10 years that I can remember, and I'm pretty sure that it is inherited from my Father, and his Mother. Please feel free to send me a response if you have any details.
Your RLS story is very typical. Low dose dopamine agonists (Mirapex or Requip) work great for most RLS patients. There are tens of thousands of patients using these medications for RLS. There are no known long term side effects that should prevent you from taking these medications.
Sent: Thursday, September 01, 2005 1:28 AM
Subject: Re: Parkinson
MJB, thank you for your response.. Actually, according to doctors at Jackson Memorial Hospital in Miami, in 1967 When my brothers symptoms first occurred X-rays showed a spot on the cerebellum of the brain, doctors called Dystonia. They said this was the cause of his uncontrollable jerking and shaking of the legs and head. After his head drew back, It was like he had Cerebral Palsy. T
his led them to disconnect the cerebellum and attach it to a pace maker ( one of the first surgeries of it's kind.) His symptoms Immediately disappeared. Two weeks later he was home, three weeks later he died. Could have been of several reasons but they said cause of death was dystonia as stated on death certificate. That's why I was just a little worried.
Don't know if this is hereditary or not. He was 32 years old and I am 53 years old. Doctors don't really tell you anything anymore. I try and read up on all I can about this NOW.
Dystonia is not a diagnosis by itself but rather a descriptive term which describes a certain type of movement. Their are many disorders that contain the word dystonia and each one of these may be quite different from the other. To decide whether or not your brother's dystonia might affect you, you would need to know more about exactly what type of dystonia he had. Without that knowledge, it may be impossible to figure out its impact upon you.
Sent: Thursday, September 01, 2005 12:24 PM
Subject: Problems with Doctor
I was diagnosed with RLS a little over a year ago. I have had the symptoms for years. I had gastric bypass surgery in Jan. 03. I have since lost 154 pounds. I had symptoms of RLS before but not as bad as it was about 6 months after the surgery. The first Doctor I saw diagnosed me, threw a scrip for Sinemet at me and sent me packing. I had bad side effects, augmentation as well as a few others like heart palpitations, anxiety etc. It was keeping me up as bad as the RLS.
When I called the office to tell him that I was experiencing these effects, his nurse called me back. After I explained to her what was going on with me her reaction was..."I've never heard of that happening". He called me in a scrip for Mirapex, and once again I had similar problems with it as with the Sinemet. I called and was once again dismissed by the nurse. Needless to say I didn't go back to that doctor. Next I thought I had gotten lucky, I found a doctor in town who's wife had RLS, and I thought great, someone who has experience with this disorder and won't treat me like I'm crazy.
The first thing he tried was a cocktail of Ambien, Advil, and exercise, but to no avail. The next thing we tried was a syrup called Tussionex that contains a low dose of Hydrocodone. This worked great. For the first time in a long time I slept. I felt great. Then all of the sudden he wanted to me to stop this, (something that was working) and try a combo of Ultracet, Naproxen, and Flexeril. I tried it. It worked pretty well, not as good as the Tussionex, as I was having issues of intermittent RLS/PLMD.
He then gave me a scrip for 2 refills of the syrup and told me to switch back and forth, go through the 4 oz. bottle of syrup then after I finished it go on the Ultracet for a couple of days then go back to the syrup. I did this, and when I called back in for a refill of the syrup, I was told he wouldn't refill it or the Ultracet. I'm not sure what his reasoning is here because I have not been able to talk to him and get an answer.
Could he fear abuse? I took the meds as directed. I would like to be on NOTHING, and go back to sleeping, but that is not going to happen unfortunately. I am now back to suffering with pain and no sleep.
I am seeing another doctor next week for a consult. I called ahead and ask if she had ever treated anyone with RLS, and was told she had. Is there something I'm missing here? I researched the Mayo Clinic Algorithm and have tried every class of drug listed except the benzodiazepines.
I hate being on the narcotics because of the stigma. But it seems to be the only thing that completely stops the RLS/PLM's.
Do you have any suggestions as to how I can talk to the new Doctor, and try to get a partner in my treatment, not a someone who will dismiss it as crazy?
It is very likely that your doctor is concerned about the addictive nature of narcotics. This is a very uncommon problem when using low doses of the narcotics. However, most doctors feel very uncomfortable prescribing narcotics for long periods of time.
We usually do not recommend Tussionex as it also contains an antihistamine (which can worsen RLS) but rather pill forms of hydrocodone such as Vicodin or Lortab.
You can alternate the narcotic with Ultram (not Ultracet which contains the unnecessary acetaminophen). This should decrease the amount of narcotic needed and appease your doctor.
Sent: Friday, September 02, 2005 4:10 PM
Subject: Blood tests for RLS. Diabetes and RLS?
I get an urge to move my right leg with a burning feeling and a feeling of I have to rub my leg from mid top of thigh to knee area and into calf all pain on the right side of leg. So far it hasn't affected my left leg at all. Is this restless leg syndrome & what can I do to alleviate this from happening to me?
I am a diabetic on insulin, type II, taking 2 shots a day, 1 at breakfast & l at dinner time. I am on a lot of medication, 3 pills for blood pressure, 2 diuretics, cholesterol, quinine for leg cramps, Nexium. Can I possibly have renal failure & don't know it & if I should have, shouldn't my doctor be able to tell this in blood work?
There are no blood tests for diagnosing RLS but your doctor should do routine blood work on you that includes a test for renal failure (this is a frequent must do test for diabetics).
If you get this burning feeling in your leg with an urge to move the leg and the burning goes away when you walk but return when you rest, you most likely have RLS. The last criterion is that the problem should either occur only at night or be worse at night.
If you do have RLS, then there are many drugs that can help you. Currently, Requip is one of the best drugs for RLS and is approved by the FDA for this use.
Sent: Saturday, September 03, 2005 3:15 PM
Subject: RLS getting worse with Sinemet?
I have RLS and take carb/levo (Sinemet) 25-100 mg twice a day. My legs still jerk. Its driving me nuts. I started taking this less than a year ago. The doctor started me out on 25 mg then worked up. Do they make a stronger dose and if not do you know of any other medication that would help. Its got to where I can't even take a short afternoon nap.
53 year old female
You are getting augmentation of your RLS which occurs in over 85% of patients who take 2 or more of the Sinemet (carbidopa/levodopa) 25/100 tablets per day. If you take more of the Sinemet or increase the dose, the augmentation will worsen to degrees that you cannot yet imagine.
Augmentation usually occurs within several months of starting Sinemet and gradually get worse. Symptoms start occurring earlier in the day until they start when you wake up. The symptoms are also much more severe and may spread to your arms or other body parts.
You should speak to your doctor about weaning off of Sinemet and changing to Requip, which is now the drug of choice for RLS.
Sent: Tuesday, September 06, 2005 6:35 PM
Subject: Sleeping and RLS?
I was just reading over the latest letters on the web pages and noticed a lady having the same type sleeping problem as I have. I take 1mg of Requip about an hour before bed and then 3 mg of Lunesta along with two Tylenol PM when I am ready to get into bed. I tried the Lunesta without anything else and had a really hard time sleeping.
Even with the Tylenol PM added I still wake up several times a night but at least now I can usually get back to sleep. ( However, it doesn't last for the eight hours as advertised.) Maybe it would help her also.
You should be very careful using Tylenol PM as it contains an antihistamine diphenhydramine), also known as Benadryl which can markedly worsen RLS.
A Reply from Bonnie S.
Sent: Wednesday, September 07, 2005 5:36 AM
Subject: Sleeping and RLS?
I already take Allegra in the mornings since the clinic I was seeing (for my allergies) no longer will give allergy shorts (said it was too much bother). Maybe I should look up an allergy doctor out of town???
My doctor's (actually NP) husband has RLS. And she takes Lunesta (along with Benadryl to make it work better). At least she has done a lot of reading on RLS for her husband and seems to know more than the MD's here that I have seen. One told me to try quinine water before bed--didn't do much. I have since read that you would have to drink a LOT of it to work.
Quinine helps leg cramps, not RLS. So even drinking a lot will not do the trick for your RLS.
A Reply from Bonnie S.
Sent: Wednesday, September 14, 2005 6:30 PM
Subject: Sleeping and RLS--another question?
I have noticed many comments from RLS patients about not being able to sleep. Is there a connection and what might that be (other than the moving legs)?
I was prescribed Neurontin (1200 mg) about a year ago. It worked great for about 5 months and then began to wear off--went to Mirapex (.5 mg) and Neurontin (600 mg) each night but without much success. I am currently taking 1 mg Requip at 9 pm (which really seems to knock my system into a tired mode) followed by taking 3mg Lunesta and a Tylenol PM at 10 pm just before going to bed. I no longer watch TV in bed but turn the light off and go pretty much directly to sleep. The problem arises when I wake up. It doesn't matter if it is at 3 am, 4, 5 or 6 am, I am pretty much awake for the rest of the night--even though I don't get up. I just lie there with my eyes closed hoping to fall back asleep.
Could I stop the Tylenol PM (which I tried without and could not fall asleep) and add 400-600 mg Neurontin to the Lunesta? Would this cause a problem or should I just forget asking my doctor about it? I would love to get a good sleep of 8 hours for a change. I have only had this problem for the past two years. What causes the changes? I used to sleep while my legs went crazy but now I can't sleep long enough and the legs are still (thanks to Requip). I am still tired but not like when I was having the 70 times an hour arousal from the PLM/RLS (according to my sleep test). At that point I was put on antidepressants which I stopped on my own a year ago since they didn't seem to help. In talking to a psychiatrist (before having gastric by-pass in Oct) he said I just needed to get some sleep, thus the Neurontin. (I stopped seeing him in July when he wanted to put me on Mirapex during the day also--made me feel terrible).
Researchers should have started on this fifty years ago (or maybe they did and didn't come up with anything).
Thanks for any help. The questions asked and your answers of a great help and so interesting.
It sounds like you only have PLMS. Patients with RLS get
unpleasant leg sensations with an irresistible urge to move their legs when at
rest. When they try to sleep, they must get up and move to relieve these
Neurontin does work well for PLMS in many patients and might be a good addition to your Requip and Lunesta. The Tylenol PM does produce sleepiness but may worsen PLMS and is not a great sleep drug.
Other then the Neurontin, I do not have any other suggestions about your sleep. Proper sleep hygiene may help and seeing a sleep specialist may also be useful.
However, something strange has happened. For four nights now, my restless leg syndrome has stopped.... "Praise the Lord". I don't know if these drugs are doing it or what other people have said on the internet....."A bar of soap at the bottom of your bed".
At the present time, I am taking neither Mirapex nor Requip for my condition.
Sent: Wednesday, September 07, 2005 5:12 PM
Subject: RLS and hormone replacement therapy (HRT)?
Ten years ago I was diagnosed with RLS after a battery of tests ruled out other possible diseases/syndromes. I was given valium--which helped--and told I would just have to live with the condition. Coincidently, I was peri-menopausal at the time and another doctor prescribed hormone replacement therapy for hot flashes and night sweats.
After a few months, my RLS symptoms diminished--nearly cleared up entirely and I stopped taking valium. Now ten years late, I have stopped taking my hormone pills because of the increasing worry over possible long term effects. Within two weeks of stopping HRT, my RLS symptoms returned with a vengeance. Is it possible that RLS could be related to hormone deficiency? Has anyone else had this experience?
It is very common for women with RLS to notice significant fluctuations with changing hormonal levels. Many complain about worsening RLS during the premenstrual week. Others get better or worse with starting hormonal therapy at menopause. You are certainly not alone in your experience.
Hello, I have been struggling with RLS for the past 6-7 years, though it went undiagnosed until 4 years ago, and then it remained untreated until the past month. The last three months the RLS has been unbearable. Also, I am a newlywed, my husband has just gotten home from Iraq, but due to the amount of pain and movement, I find myself alone on the couch so I don't wake my husband with my constant tossing.
I finally went to a doctor who actually knew what RLS was, and he told me I had an iron deficiency, to take a lot of iron (he prescribed an amount) and gave me Ambien for a week and a half. I've been taking the iron supplement 2 times a day for a little over a month with no improvement. The Ambien was incredible while it lasted.. I was asleep in minutes. I only slept for 5 hours at a time though, and with insane dreams.
I am almost out of my mind. Night after night, I'm so tired that I cry because I can't sleep. I don't have a clue what drugs are out there, and I admit I'm a bit scared of taking new drugs... my doctor was hesitant to prescribe anything because I'm only 24 and he doesn't want me dependent on anything... and neither do I want a dependency.
However, I can't go on like this. I can't focus on anything, and although we just moved and I'm excited to get a new job, I'm afraid of getting a job while I'm this tired and unable to do anything. I'm even afraid to drive while I'm this tired!
Please respond. I need advice!
From reading through the site it appears that most anti-depressants worsen PLMD, with the exception of Wellbutrin (which I take for depression) and Remeron. Do you have any experience with the effect of Strattera on PLMD?
Sent: Saturday, September 17, 2005 8:57 AM
Subject: RLS in hips/pelvic region?
I've written to you in this past and you've been very helpful. Have you come across any patients who say they have RLS in the hips/pelvic region? In the last seven months, with it having gotten so bad recently that I finally starting taking Klonopin (which was prescribed to me in February). I feel like it's in my hips/pelvis because I am semi-awake all night stretching my body out, not just the bottoms of my legs, but the whole torso (like one would on waking in the morning, except over and over and over again, so that I wake up feeling awful, with a headache).
It feels somewhat different from RLS in my legs--which I guess
could make sense--but I just can't find any info on the internet about it so I'm
wondering if it's actually something else.
Thanks so much,
RLS does occur in other body parts including most commonly the arms but also the trunk, hips, neck, genitals, and rarely, even the face as the condition worsens. Your experience is therefore not too uncommon.
Klonopin is not one of the best choices for treating RLS. Requip or Mirapex should work much better.
A Reply from MJD
Sent: Saturday, September 17, 2005 2:56 PM
Subject: Re: RLS in hips/pelvic region?
Thank you so much; it really has become difficult (before, when it was just my legs, it was not really a big deal). I have it in my hands and arms too. I'm about to see a new PCP, as I've just moved to a new state and so could ask about Requip or Mirapex--I was just going to ask for a new RX for the Klonopin.
The Klonopin has been working well (I might wake up for a second or two once or twice but it's been a vast improvement over the semi-conscious state I'm in the nights I don't take it)--but you think Requip or Mirapex would be better?
Requip or Mirapex should eliminate the RLS symptoms. They do not put you to sleep which is the only function of Klonopin. However, Klonopin has a very long half-life and has a significant addiction/tolerance potential.
A Reply from MJD
Sent: Sunday, September 18, 2005 7:07 AM
Subject: Re: RLS in hips/pelvic region?
Thanks again--I'm probably going to be going on Wellbutrin--can you take that at the same time as Mirapex or Requip? (Have any of your patients reported any success with Wellbutrin for RLS? I thought I'd read somewhere about it helping with RLS).
Wellbutrin is the only antidepressant medication that has some dopaminergic action (like Mirapex and Requip) so it may actually help RLS a little bit. Mostly, it does not bother RLS.
Sent: Saturday, September 17, 2005 1:00 PM
Subject: Question re: side effects of Mirapex
I have been reviewing your website, and am writing you with a question about taking Mirapex for RLS.
My current dosage is 2 25mg tablets of Mirapex at dinnertime, followed by two more tablets at bedtime. Within 1 1/2 -2 hrs of the dinnertime dosage I experience severe loss of use of the upper leg and low back muscles. They just don't work, making it difficult and painful to get up out chairs, climbing stairs etc.
I've experimented by stopping the Mirapex (not a solution), and the muscle problem goes away. But as long as I have any Mirapex, the symptom is present. increasing in magnitude the more Mirapex I take.
Do others have this problem? If so, any solution?
I have never heard of your particular problem occurring with Mirapex (or any other dopamine agonist). My suggestion would be to change to Requip, another dopamine agonist that may or may not share that side effect.
Sent: Saturday, September 17, 2005 4:17 PM
Subject: A good depression medication compatible with RLS??
I have RLS, treated with 0.625 mg Mirapex nightly. Right now my RLS is pretty stable. I have had a lot of stress added to my life, and I find myself crying easily, very anxious and irritable. In the past I have tried Effexor, which made my RLS much worse, Wellbutrin, which caused me to have panic attacks, nausea, & anorexia. I feel out of control sometimes, and would like to find something that can help me, but not hurt my RLS, be addictive or sedating.
Do you have any suggestions for me?
The two best choices in your situation are trazodone or desipramine. Trazodone is somewhat sedating (many doctors prescribe this as a non-addicting sleeping pill) so it is generally taken at bedtime.
Sent: Saturday, September 17, 2005 4:54 PM
Subject: How I treat my RLS
1. Used to go outside at 2 a.m. barefooted and stand in the snow to stop it.
2. Actually would sit on a chair with my feet in a freezer.
3. Would wrap each foot in separate heating pads.
4. Tried all sorts of muscle rubs
5. Bought Homemedics magnet sets and wrapped them around my feet with socks. This did help once in awhile.
Have some strange feelings and conditions I would like to list too to see if others have them-maybe to document them somewhere as clues to all this.
Sent: Sunday, September 18, 2005 10:54 AM
Subject: RLS better with quinine?
I have suffered from RLS for years. About 20 years ago I started taking one or two Quinine Sulfate tablets (260 mg) at night. Rarely do I have any more symptoms. If I do I put a heating pad on the bottom of my legs. I'm surprised Quinine has not been recommended more frequently.
If you have true RLS, then quinine has no effect, other than placebo (sugar pill). Most RLS patients have been given this medication mistakenly (as doctors think they have leg cramps since they most often miss the diagnosis of RLS) and rarely do any RLS patients get benefit from quinine.
Sent: Sunday, September 18, 2005 5:43 AM
Subject: RLS questions with depression?
My husband has RLS. He takes Lexapro, Wellbutrin, Lipitor. Prevacid and Zyrtec. The SSRI's clearly exacerbate the problem and truthfully, discontinuing them is not a viable option. That said, the RLS has become intolerable (for both of us with much interrupted sleep).
1) Will Mirapex/Requip work if you are still taking an SSRI?
2) Is there any better outcome with a mood stabilizer instead of SSRI? (I have begun to wonder about cyclothymia with him)
3) Do you have any experience with the efficacy of acupuncture with this condition?
4) Is it likely that the Zyrtec or Lipitor are factors?
5) Does diet seem to be a factor at all with this; he is fairly sugar addicted.
1) Mirapex and Requip should work quite well with an SSRI.
2) SSRI antidepressants are mood stabilizers (that is not really a medical
term). Desipramine and trazodone may help (instead of Lexapro) as they are RLS
friendly however they may not have as much a benefit as the Lexapro.
3) Acupuncture has never been shown to help RLS.
4) Lipitor is not a problem but Zyrtec has a small chance of bothering RLS. Allegra or Clarinex are better choices.
5) No studies have been done to prove that sugar or refined carbohydrates can worsen RLS but many patients have reported this problem (and improvement with stopping these foods).
A Reply from Martha
Sent: Sunday, September 18, 2005 5:26 PM
Subject: RLS questions with depression?
I am using the term mood stabilizer to refer to neuroleptics like Equator, Lamictal etc. My question here is whether they also exacerbate RLS-- or if that is strictly a side effect of SSRI's.
Another related query: Is Cymbalta, the relatively new SNRI, also a culprit in RLS? Thank you for your response.
All the neuroleptics, except for Abilify, worsen RLS.
The SNRI's (Effexor, Serzone which is somewhat restricted and the newer Cymbalta) increase levels of serotonin almost as much as do the SSRI's. They therefore worsen RLS as much as the SSRI's. Serzone, which has limited availability has more norepinephrine activity than serotonin, so it is somewhat better for RLS.
Sent: Sunday, September 18, 2005 11:45 AM
Subject: RLS in feet?
I am 67yrs old and have just been told by my doctor I have RLS. I was 1st told I had to go have a ultra sound of my legs to see if I had PAD Thank God it came back negative.. The reason I am writing to you is, the doctor has told me to start taking REQUIP for 14 days, and call him to see if it has helped I am nervous about starting this meds.. Could you tell me something about it?
I also would like to know does RLS cause so much pain to my feet.. I some times think my feet hurt worse then my legs At my age, everything hurts but when your feet and legs hurt, it feels as if there world is coming to a end. Anything more you could let me know about RLS my feet and this medication would be appreciated.
RLS can affect the feet. Most RLS sufferers do not have pain but rather a hard to describe discomfort (see our website for more descriptions of this discomfort, but usually described as creepy-crawly feelings) in their legs. Requip is currently the drug of choice for RLS and the only FDA approved medication for this disorder. It has an excellent chance of helping your problem. Increase the dose until your symptoms are resolved but do not take any more than necessary to do so.
Sent: Tuesday, September 20, 2005 1:12 AM
Subject: Severe RLS help?
Please help!!! I've had RLS symptoms since high school '84-87, but in the last year the symptoms have become much more severe. I have constant pain in my feet (it feels like bones have been crushed), pain inside my calves and hamstrings. stretching helps temporarily. When I try to sleep I have the uncontrollable urge to move my legs. recently, I'm getting the same feeling in my armpits and hands (in my hands I have to constantly flex and shake them.) I've had a comprehensive workup and all tests are normal (MRI brain, EEG, blood).
My doctor has prescribed the following: Soma, Mirapex, Sinemet, Klonopin, Neurontin, quinine, Requip and oxycodone. the only medication that helps for sleep is the oxycodone. however, my tolerance has increased and more medication is needed to achieve restful sleep. I'm taking 20 to 30 mgs per day. If I don't take any medication I cannot fall asleep until at least 5:00 a.m.
My doctor is increasingly reluctant to prescribe the oxycodone and I
appreciate the reasons why but family concerns and work issues dictate that I
cannot afford to be sleep deprived. (I now understand why sleep deprivation is
such an effective means of torture.) It is very hard to explain to a loving wife
and a 4 and 6 year old why I have no energy not to mention my law partner why
I'm attempting to nap during business hours. I've come to the conclusion that I
probably ought to see a pain management M.D. who has experience in controlling
these type of issues. I feel a certain stigma association with the oxycodone and
feel so alone in my experience with this debilitating problem.
At this point I would consider any type of treatment from acupuncture to human growth hormone. My questions are these: would Ultram be effective as a daytime med and oxycodone at night (i.e., because I'm tolerant to oxycodone would Ultram be effective?; is there anything else that could help me that I haven't tried; or am I relegated to oxycodone for the duration of my life (I'm 36 yrs old). Please help!!!
Severe RLS with painful symptoms can be very difficult to treat (as I am sure
you already know all too well). The narcotics tend to work very well, however
addiction and tolerance must be avoided. Methadone is a much better choice as it
is a less addictive drug. Changing to this drug from oxycodone may be helpful.
I would suggest using Ultram and if it helps your RLS, then alternating it with methadone may be beneficial. Instead of using them in the same day, I would rather recommend taking the Ultram for a few days every week or 2 to give yourself a drug holiday from the narcotics.
Although you state that Neurontin did not help, it might have some additional benefits if used with the painkillers (methadone and Ultram). If Neurontin does not help at all when used in combination, then other anticonvulsants should be considered (Keppra, Topamax, etc.). It often takes a few medications taken in the correct fashion (which may often only be determined by educated trial and error) to take care of your RLS symptoms effectively and safely. A pain management doctor may be a reasonable choice but a doctor with lots of experience in treating severe RLS would be better.
Sent: Tuesday, September 20, 2005 9:31 AM
Subject: RLS and BFS (Benign Fasciculation Syndrome) connection?
Last winter, I had a bout with insomnia and anxiety that landed me on Lexapro. At which point my legs, which had never been a problem, fired up fiercely with feelings that closely correspond to the description of RLS (creepy crawlies, hard to describe discomfort, although no compelling need to move my legs for relief and no circadian rhythm thing), although I also experience twitches and fasciculations body-wide but mostly in the legs.
These symptoms remained well after I quit Lexapro over 6 months ago. I understand that there is a Benign Fasciculation Syndrome as well, that ostensibly is not connected to RLS. Are you aware of any studies that looked at both as there seem to be a lot of sensory symptoms in common? Any patients that you're aware of that have had a crossover between the syndromes?
My neurologist is getting ready to try me on Requip as an experiment, but
anything that potentially causes insomnia or causes me to fall asleep at the
wheel unexpectedly has me a bit nervous at the moment... Had too many bad med
I'm very interested if there has ever been a link suspected between BFS and RLS.
BFS is not related in any way to RLS. There are no reports in the medical
literature linking the two disorders nor have I ever heard of any link.
Although a small percentage of RLS patients do get side effects with Requip, these are usually mild and do not last more than a few days after increasing the dose of the drug. Most RLS patients need extremely low doses of this drug which also lowers the potential for side effects.
However, with no urge to move your legs to get relief or relief with movement and no nighttime worsening of symptoms, it may be much less likely that you are actually suffering from RLS.
A Reply from Dave M.
Sent: Tuesday, September 20, 2005 11:22 AM
Subject: Numbness in feet?
I Have only been using the drug Requip for 2 weeks. One of the symptoms I had and still have is a numbness in the bottom of my feet every morning when I get out of bed. I canít put any pressure on my feet I just slide them across the floor to the bathroom. It only lasts about 3 or 4 minutes, then everything is fine. I didn't see any information about anyone else having these symptoms. Will this lead to something worse?
Many RLS sufferers do complain of numbness in their legs or feet. Usually it lasts longer than a few minutes. It is possible that this problem may worsen with time but that is quite unpredictable.
Sent: Tuesday, September 20, 2005 12:24 PM
Subject: PLMD and Requip
Your website is truly a blessing.
I have been on Requip and Ambien for approximately 8 months. Most of the other drugs, Klonopin, Neurontin, Mirapex (and one other, I forget the name) have had no effect but the Requip has worked wonders. Only problem is that my doctor has had to increase the dose every three months or so to keep it effective. I have been on 4 mg for a little over a week now and already it is losing itsí effectiveness.
Is this common? If I take something else for a bit can I go back
to the Requip eventually?
It sounds as if you are getting tolerance (less likely) or augmentation with
Requip (more likely). If your symptoms are starting to occur earlier in the day,
are more intense or are spreading to other body parts, then augmentation is
The dose of 4 mg of Requip is rather large and you are near the end of the therapeutic effect of this drug. Generally, getting off the drug for a few weeks (or longer) will often re-establish its effectiveness. The way to do this is have your doctor switch you to a painkiller, Ultram or Vicodin (I much prefer methadone, but most doctors do not like to prescribe this drug) for the weeks that you are off the Requip.
When you restart the Requip, use it a lower dose and supplement it with the painkiller. This way you can get by with a lower dose of each class of drug and avoid tolerance, addiction and augmentation.
Sent: Tuesday, September 20, 2005 2:40 PM
Subject: Acetaminophen for RLS?
I have suffered from RLS for 20 years.
I also have a friend that suffers from RLS, and we mutually find the same solution very helpful. We take Paracetamol at onset of RLS. Sometimes it needs to be a high dose. The problem goes within 15minutes, and allows the onset of sleep. If RLS wakens you in the night, take another dose.
I have been doing this for years. It hasn't been a cure, but a nightly solution. It does raise a concern of how the paracetamol effects the liver, but I have had liver functionality tests recently which have shown no problems.
Paracetamol is cheap, and here in New Zealand can be bought over the counter for $2 for 20 tablets.
I have noted that on a previous email from a person (November 12 2001) who suggested the use of paracetamol that you replied that there wasn't no evidence to suggest its helpful. I have noted on other internet sites other people finding it good, and I don't believe you should underrate its value.
A question: I also suffer from IBS, has there been any recent studies to show a link?
There is still no evidence to suggest that acetaminophen (Paracetamol or Tylenol here in the USA) has any benefit for RLS. In fact, although a few RLS sufferers seem to get some benefit from this drug, the vast majority of RLS patients do not benefit from acetaminophen.
There is no link between IBS and RLS.
Sent: Tuesday, September 20, 2005 3:26 PM
Subject: RLS treatment and Synthroid medication?
My doctor prescribed REQUIP for my RLS recently, for some reason my insurance does not cover this. From reading some of the other postings on here, I understand some other medications may be Sinemet, Mirapex or Tramadol. A few months ago I had a left thyroidectomy and was put on Synthroid, I was wondering if any of this medication would interact with the Synthroid?
These drugs do not interact with Synthroid. Mirapex is a good choice as it is very similar to Requip. Sinemet causes augmentation and should be avoided except for intermittent RLS. Tramadol is a good choice but should be used only when the dopamine agonists such as Requip or Mirapex have failed.
Sent: Tuesday, September 20, 2005 3:34 PM
Subject: Stopping Clonazepam?
I a am 37 years old and was diagnosed with RLS about 3 years ago. I had been taking levodopa as my maintenance drug along with Neurontin. Really didn't work. So I was given temazepam along with l-dopa. Didn't work. Then it was on to clonazepam. It works but not all of the time and I feel like a zombie the next day.
So, my doctor put me on Requip and Lunesta, completely stopping clonazepam after about 1 1/2 years. I just started this a couple of days ago and I actually feel worse (Insomnia, severe RLS symptoms) .
Is it safe to suddenly stop clonazepam after using it for so long? Should I slowly come off of this drug?
Klonopin is a potentially addicting drug and can result in severe withdrawal
symptoms (including seizures) if stopped suddenly. Most doctors taper this drug
off over several weeks.
Requip is a very good choice for RLS. Ambien or Lunesta taken only when you have trouble sleeping would be very reasonable.
Sent: Wednesday, September 21, 2005 4:07 PM
Subject: RLS & Parkinson's Disease (PD)
My father had Parkinson's' disease (PD) before he died. I do not know if he ever had or recognized that he had RLS.
I have RLS (definitely) and PLMD (most likely - I NEVER sleep through the night and constantly roll from side to side - and am exhausted at work during the day).
My concern is whether or not my RLS and PLMD may be early-stage warnings of Parkinson's to come. Is there any known relation / progression between the two diseases? Does this onset of RLS & PLMD mean that I may be more likely to progress to PD like my father? Can anything be done now to ward off / prevent PD?
RLS does not lead to PD. You do not have to worry about your RLS eventually
leading to PD or how you should prevent it (which you could not do anyway).
It is true that PD patients may have a higher prevalence of RLS (possibly as high as 20% compared to 10% in the general population) but the reverse is not true (that RLS patients have more PD).
Sent: Wednesday, September 21, 2005 8:11 PM
Subject: RLS and Sinus problems?
I have sinus problems (hay fever, allergies) and am aware certain medications will aggravate my RLS. Can you recommend anything that will help my allergies without turning my RLS up a notch?
There are several good choices for treating allergies and hay fever without
affecting your RLS.
The newer non-drowsy antihistamines (Claritin, Clarinex and Allegra) do not cross into the brain and thus should not bother RLS. I also recommend the steroid nasal sprays (Flonase, Nasacort, Nasonex, etc.) that treat the problem very well locally and also do not bother RLS at all.
The last choice is Singulair, which helps sinus allergies and asthma at the same time.
All the above medications can be taken alone or in combination with each other.
Sent: Tuesday, September 27, 2005 8:07 AM
Subject: Cause & Solution for RLS revealed?
Is there any established credibility to the thesis in Marie Goodwin's booklet "The Cause and Solution to Restless Legs Syndrome Revealed for the First Time" to the effect that excessive dietary salt is the RLS cause and a salt free (or drastically reduced) diet along with a magnesium regimen is the solution, a result which she "guarantees"?
Further: Goodwin contends that there is an established connection between digitalis (Lanoxin, digoxin) medications and RLS, citing "The Salt Solution" by Richard D. Moore, MD, PhD. A month or so after beginning use of digoxin and Inderal for atrial fibrillation, my wife started PLMS. Your comments will be appreciated.
San Marcos, TX
There is no available credible literature to support a link between dietary
salt or digoxin and RLS. If Marie Goodwin knows the cause of RLS then she has
knowledge that is not shared with all of the top RLS researchers in the world.
Beta blockers such as Inderal may have some benefits for PLMS.
Sent: Thursday, September 29, 2005 4:29 AM
Subject: Changing Mirapex to Requip?
I am 62 and have had RLS for over 25 years. I have been taking Mirapex for the last 7 years. I am now up to 1 mg per day, 0.5 mg at dinner time and 0.5 mg at bedtime. This worked well for a long time but now is losing its effectiveness. A few years ago I had the same problem and switched to Requip for a while. The Requip was not as effective as Mirapex but when I went back to Mirapex it worked great again.
I would like to take a drug holiday from Mirapex and switch to Requip again
for a while. My question is, how long should I stay off Mirapex before switching
back? Are there any newer drugs that I can try?
There are no real guidelines for changing from one dopamine drug to another. Often 1-3 months works very well but there can be a lot of individual variation. Only trial and error can tell you for sure. To be on the safe side, 3 months would be a reasonable trial.
Sent: Thursday, September 29, 2005 12:24 PM
Subject: RLS and anti-nausea drugs?
I am worried. I take Neurontin for RLS and it almost always is enough. I had a medical procedure done that went wrong and the pain was bad so I had to take hydromorphone pills and 1/2 of a Phenergan every night for 6 weeks. I knew the Phenergan made my legs jerk, but when I would take an opiate with it, that would counteract it, and there would be no jerking. So that is what was happening for these 6 weeks.
Two days ago, I felt able to stop the pain pills, so stopped taking both the
pain pill and the Phenergan. The first night, my legs jerked and I took more
Neurontin and that worked. But the second night (last night), I was still up and
the legs started and when I took more Neurontin that didn't work. So I took
Permax, which always has worked, and that didn't work. I also take Xanax every
night. I had to end up taking the morphine pill to stop it, which I didn't want
I am thinking that taking that Phenergan for so long is what has done this, and I'm worried. Could this be permanent? I have stomach problems too, so don't think I could take opiates every night!
Have I done something to tip the balance and it could be permanent? Also, is there an anti-nausea that is safe and doesn't make RLS worse?
Any trouble that is caused by the phenergan should only occur while the
phenergan is active (about 6-8 hours). After it is metabolized and no longer
active it should have no effect on RLS. If your RLS is worse, you must look for
some other cause. It is not unusual for RLS to worsen after trauma (which
Kytril and Zofran are safe (but expensive) anti-nausea medications that do not worsen RLS. You can also use Domperidone (available from Canada) which is much less expensive and also does not worsen RLS.
Sent: Thursday, September 29, 2005 7:00 PM
Subject: Cure for RLS with vitamins, Empower Plus?
My husband has suffered with restless leg most of his life. A few months ago we learned about a vitamin called Empower Plus made by a non-profit company called True Hope. After taking the recommended dose for 3 weeks his restless symptoms stopped entirely -- and they have never come back -- he is continuing to take the vitamins indefinitely.
I am convinced that restless leg is caused by a vitamin deficiency in the brain. People metabolize food at different capacities and that is what is passed down genetically -- the ability to draw vitamins and minerals out of food -- and some people need more than others. The Empower Plus vitamin contains the 40 or so vitamins and minerals that make the brain function properly. The phone number is 888-truehope and the website site is truehope.com.
The vitamins were developed to combat depression and bi-polar disorder and are to be taken at a much higher dose for that purpose. Taking a lower dose gets rid of restless leg. Doctors will try and make you take drugs -- drugs don't fix the problem, they merely mask the symptoms.
There are no medical studies to support the use of vitamins for RLS. That
does not mean that they do not work but rather that there is no evidence to
validate these claims.
There are many anecdotal reports such as yours but it is very rare that these products help many other RLS sufferers. However, we will post your treatment and see if others do benefit from this therapy.
A Reply from Lisa K.
Sent: Monday, October 03, 2005 7:17 AM
Subject: Re: Cure for restless leg
There are medical studies being done now on this particular vitamin product -- at Harvard in fact. There is a very good article in Discover magazine about the company True Hope that makes the Empower Plus formula. Obviously there are very few studies on vitamins curing anything because no drug company would ever fund the studies.
Also I am not saying that any old vitamins cure restless leg -- I'm saying that the combination of the 40 or so vitamins in the amounts prescribed by True Hope taken daily cure restless leg. I've witnessed it with own eyes --beyond my husband, my cousin and a good friend have also been cured.
I suggest you get someone you know to try it-- but make sure they follow the regime to the letter.
It should be very interesting to read the Harvard results once they publish
their results. Until then we cannot recommend this particular treatment.
It is already posted on our website so we will see if others benefit from this vitamin therapy. It is often very hard to separate the placebo effect from real benefits of therapies such as vitamins.
Sent: Saturday, October 01, 2005 8:45 PM
Subject: Endep and Cabergoline for RLS?
I have written to you before about RLS and FM. My neurologist put me on Cabergoline but Iím worried about the heart valve side effects as there is a history of heart problems in my family. My brother died at 42 from a massive heart attack and my mother has heart problems.
I have read that Endep is good for RLS and FM. Iíd like your opinion on this medication.
Cabergoline (Cabaser in the UK but called Dostinex in the USA) may work well
for RLS but it is an ergot-derived dopamine drug and therefore may cause heart
valve problems. If you use this drug, you should have yearly echocardiograms to
check for heart valve damage. Mirapex and Requip are non-ergot derived drugs and
do not share this problem.
Endep (amitriptyline or Elavil in the USA) is a tricyclic antidepressant drug that tends to worsen RLS. It has been touted as beneficial for FM (fibromyalgia).
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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