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Sent: Saturday, May 22, 2010 3:16 PM
Subject: Various restless conditions
I do not suffer currently from RLS. However, I did have it for years. Now it is 'Restless Arm' and 'Restless Back.' I have been using Mirapex and methadone for almost five years through the University of Maryland and John Hopkins. The RLS started about 1989. I did a drug study at Jefferson in Philadelphia in that year. Until Hopkins helped me the condition was well nigh intolerable.
I also have sleep apnea, need a back operation and a knee repair. I can walk for a couple of minutes. Depression, asthma, arthritis, there is more but that should be enough.
I will be 72 years old in September and am obese. Married for almost 43 years - my rock and my staff. Lately the Mirapex and methadone at present dosage do not keep me from suffering RLS, RA, RB every day.
Seriously, can my restless whatever be considered extreme? It forced me into retirement in 2003.
RLS may get worse with time (typically over many years) or due
to augmentation (worsening of RLS due to taking a dopamine drug like Mirapex).
It is likely that taking Mirapex may have caused augmentation and one of the
symptoms is progression of RLS symptoms to other body parts (usually the arms
are next then it can go in to the trunk and other areas).
If you do suffer from augmentation, then you would do better off Mirapex (but you will experience marked worsening of RLS symptoms for about 1-2 weeks which may require higher doses of methadone). You may need other medications (such as Neurontin or Lyrica) to help treat your RLS.
Sent: Saturday, May 22, 2010 9:06 PM
Subject: Mirapex A Catalyst?
I am an RLS sufferer and have been successfully taking .75mg of Mirapex for nine years. But recently, shortly after medicating, I started getting those RLS sensations not only in my legs but now also in my shoulders and arms. The symptoms are fairly severe and last for hours. The last two nights I have not taken the Mirapex and no symptoms occurred.
I know I will be bothered by future RLS episodes as I was before
the Mirapex. Do you have any suggestions?
Fort Mill, SC
Unfortunately, it sounds like your dopamine receptors are no
longer happy with your dopamine agonist drug, Mirapex. We do not fully
understand the mechanism, but you are likely experiencing augmentation. That is
worsening of RLS symptoms from taking a dopamine agonist. Typically the RLS
symptoms get more intense, spread to other body parts (other than the legs) and
symptoms occur earlier in the day.
When this occurs in a troublesome fashion, stopping your Mirapex is one of the best options. However, RLS symptoms will dramatically worsen for about 1-2 weeks so you will need potent opioids to treat your RLS for that time period.
Choices to replace Mirapex include Requip (since it is a dopamine agonist, augmentation may come back), opioids or anticonvulsants (Lyrica, Neurontin).
Sent: Wednesday, May 26, 2010 5:18 PM
Subject: Switching from Requip to Mirapex
My neurologist just converted me from Requip to Mirapex due to augmentation and rebound with Requip and the simple fact that he thinks Mirapex works better for RLS anyway. I was using 5.0 mg of Requip per day and he now has me using 0.5 mg of Mirapex, one tab in the morning and one in the afternoon with two or three at bedtime. My question is this: It seems that the ever-increasing dosing of the Requip was necessary due to the augmentation and rebound.
If Mirapex does not cause augmentation and rebound for me (yet to be determined), how will I know if I am overdosed at the level of Mirapex that I’ve described? He told me that the entry dose of Mirapex that he just prescribed was calibrated to be similar to the dosage of Requip that I was getting. Also, am I at a level of Mirapex where I may be seeing some of the side effects that you said are typically seen in Parkinson's disease doses?
RAP from Illinois
Both Requip and Mirapex have their pluses and minuses. Some RLS
sufferers do better on one than the other so it is hard to say that either drug
is better than the other (I use lots of both of them but Mirapex is a little
easier to titrate and has a longer half-life so it may last a little longer).
The conversion from Requip to Mirapex is approximately 2-4 of Requip to 1 of Mirapex (in mg). That would mean that your dose range of Mirapex would be 1.25 to 2.5 mg per day. If you are taking 5 per day, you would be at the upper limit of the dose range of this conversion. In addition, that is a very high dose of Mirapex and is in the Parkinson’s disease range (although low PD range). That does increase the risk of many side effects but all the side effects may occur less frequently even at much lower doses.
Although there is no set way of converting from one dopamine drug to another (except for what I have written in some of my RLS books), I change over in a different fashion. I would have started with .25 mg tablets (possibly even .125 mg tablets despite the potency conversion above as we really do not know how low a dose we need until trying them) and increased only as necessary.
Unfortunately, even though it may be worth a trial of Mirapex, the odds are excellent that you will experience the same problems with Mirapex.
Sent: Thursday, May 27, 2010 1:31 PM
Subject: Restless legs syndrome
Hi, I also have severe RLS, on medication. I currently take 10mg of oxycodone q8hr, Vicodin 2 tabs (7.5mg) every 8 hours and morphine ER 15-30 mg twice daily. I also take clonazepam 0.5 mg and Mirapex 0.5-1 mg at bedtime. There are nights that I am rocking on the floor for hours and almost taking myself to an ER for more narcotics.
My upper back has now started to "contort" in the evenings. My RLS can start as early as 8 AM. I have fibromyalgia and Reiter's Syndrome.
Life is just peachy !
You are on very high doses of opioids, far higher than typically
is used to treat RLS. It is very likely that you are now tolerant/dependent on
opioids an increasing the dose even more will just perpetuate the problem. This
may have occurred if you are taking opioids for your other problems. However,
the solution to you dilemma is not easy. One of the solutions is to stop the
opioids for a few weeks (life will surely be like hell!) then restart them at a
To keep your dose lower, you should consider adding an anticonvulsant (Lyrica, Neurontin). This may help you control your RLS symptoms somewhat and get by with less of the other medications.
Another issue might be augmentation from Mirapex. When augmentation of RLS occurs from a dopamine drug, symptoms start occurring earlier in the day, get more intense and may spread to other body parts. The solution for this problem is to stop the dopamine agonist. This causes RLS to markedly worsen for 1-2 weeks then it decreases to much lower levels (like before the Mirapex was started). You may have to do this before stopping opioids as you may need the opioids to help get through this process.
Clonazepam is not a great choice for a sleeping/RLS pill as it has a 40 hour half-life and there are many better, shorter acting sleeping pills.
As I am sure you can appreciate, the above recommendations may be very hard to implement. You might need the help of an experienced RLS expert.
Sent: Thursday, May 27, 2010 5:24 PM
Subject: Insomnia again!
Once again I ask for your advice. I switched to Requip over 1 year ago having developed insomnia on Mirapex. I have managed to keep on a low dose of Requip 0.50mg, but for the past 2 weeks cannot get to sleep until nearly 4 am. The Requip appears to have stopped working and my Rest less Legs are back with a vengeance.
I don't know whether to up the dose to see if it helps my RLS, but I think this may also just increase my insomnia. I do take Zopiclone now and again and it does help but I seem to develop a resistance to medication very quickly so only take sleeping tablets when I'm desperate. Think I'm getting to that stage now.
Sue in the UK
You might consider increasing the Requip and you of course find out very quickly if the insomnia worsens and whether it helps your RLS. However, it may be time to consider changing to opioids or anticonvulsant drugs (or a combination of the two).
A Reply from Sue
Sent: Friday, May 28, 2010 8:30 AM
Subject: Re: Insomnia Again!
I have to admit I am terrified of stopping the Requip. Have you suggested this because of the insomnia or because you think upping the dose just may not help? Also could you give me a few suggestions of which opioids and anticonvulsants. The names may be different in the UK
Sue in the UK
I suggested stopping the Requip as it is very likely that
increasing the dose will result in an increase in your insomnia.
Opioids that are most helpful for RLS include oxycodone and methadone. Unfortunately, it is somewhat difficult to get doctors in the UK to prescribe these drugs (even though these are amongst the best choices for patients such as you).
Anticonvulsants include Lyrica (pregabalin) and gabapentin.
Sent: Monday, May 31, 2010 1:40 AM
Subject: INCREDIBLE INFORMATION- WOW
As I read my brother's and sister's comments on this issue I wonder where in the hell did they learn so much.
I am 76 years old and afflicted by RLS (day and night), peripheral neuropathy, narcotic withdrawal symptoms I call the nervous jitters and every other syndrome and malady known to old people.
I suffered from RLS and neuropathy and jitters for 2 years and begged my doctor for help. He put me on Requip and I puked my guts out on three tries so he had me stop. In the local hospital a neurologist showed up (uninvited to my knowledge, but looking for a buck) and said " this man has Parkinson’s and put me on Mirapex and carb/levo.
Miracle of miracles, the problems went completely away and I began asking all the doctor's "ok, who the hell did this to me and why?" I wanted to kiss the son of a bitch. No one knew anything. I ask my doctor "hey doc, did you know these drugs help RLS, neuropathy, and the jitters? He reluctantly said "no, sorry".
Well, as all of you know in about 9 months the shit came back. I found the neurologist and he doubled the dosage and I’m ok again. Then my wife tires of caring for me and my spending our money on drugs to make me comfortable and deserts me. Then a judge in the superior court of Florence, AZ. believes my wife's lies that she spent the 100k in cash she stole from me and was penniless, so she awarded her everything and asks me to pay the bills and move out of our home.
So now I am financially ruined and cannot afford Mirapex. I have been out of it now for 6 days and I now know all about how hell is going to be. In desperation I type in "Mirapex withdrawal symptoms" and up pops your webpage.
You should be careful with taking carb/levo (Sinemet) as it causes augmentation of RLS symptoms (RLS get worse because of taking that drug) which is why we recommend to no longer use Sinemet on a daily basis. Mirapex can also cause problems with augmentation but much less commonly than Sinemet. When augmentation occurs, increasing the dose of these drugs does help temporarily but then the symptoms get worse and progressively higher doses are needed (until even they do not work).
Sent: Thursday, June 03, 2010 10:00 PM
I have been using Vicodin for a while now to treat both of my problems. First problem is that I have a severely torn knee. Second problem is RLS so my doctor set me up on Vicodin tablets. To treat both issues but it seems that the minute I start withdrawing from the opiates my RLS picks up and feels worse every time I there some thing I can try differently with out getting ill.
It may just be that your RLS symptoms are bad enough that they
need the Vicodin or something else to treat them. Thus, you may not be
experiencing real withdrawal symptoms but rather just lack of treating your RLS
Discuss getting on Mirapex or Requip with your doctor and that may solve your problem.
Sent: Friday, June 04, 2010 10:33 PM
Subject: Requip and nicotine
I do not smoke any more but use Committ lozenges (2 mg tablets...about 10 a day) which of course contain nicotine. Been on Requip 8mg extended release for three months and 6mg regular Requip before that for 2 years. I have pretty severe PLS. Sometimes the Requip doesn't work, but most of the time it does. I also take 400 mg Seroquel, 600 mg lithium. The pharmacist tells me nicotine makes Requip less effective. Is this true?
Nicotine does not affect Requip in any way. However, nicotine
may make RLS worse which may make it seem as if the Requip is not working as
In addition, Seroquel commonly worsens RLS symptoms.
Sent: Sun 6/6/2010 8:02 PM
Subject: Dose of Mirapex per day?
What would happen if I took more than 0.75 mg of Mirapex in one day?
Although 75 mg is the highest dose approved for RLS, many RLS sufferers do take higher doses. However, as you increase the dose the risk of side effects increases and typically, most patients do not need more than .5 - .75 mg per any one dose (for most RLS patients there is a plateau effect of the drug at about that level). Many patients with daytime RLS symptoms do take more than one dose per day (often up to 3 doses per day) which often brings them to doses above .75 mg per day.
Sent: Tuesday, June 08, 2010 5:19 AM
Subject: Traveling with RLS?
I take 1.25 mg. Mirapex at night along with 5 mg hydrocodone, compounded to remove the acetaminophen. Augmentation has started to occur and I sometimes get RLS in the middle of the day or even in the morning (not often). The drugs and the lack of sleep (4 or 5 hours) wreck havoc with my emotions. I have tried Neurontin (hated the next day feelings of being drugged), Requip (didn't work), Ambien. None of these helped. I am sometimes tempted to stop all meds but when the time comes at night, I relent and go ahead and take them, fearing a torturous night. My neurologist isn't very helpful, he just tells me to up the dosage of Mirapex.
My second question is about traveling. In about three days, I'm going on a trip that will involve an all-day plane flight each way. I am terribly anxious about how I will be able to get through it, even though the flight's as early in the day as I could get. Can you tell me of anything that will help me get through this trip? Techniques? Meds? (I am planning on getting an aisle seat.)
Getting through a plane trip can be very challenging for RLS
patients, especially ones with more severe disease like you. We usually suggest
taking more opioids so you can discuss taking extra hydrocodone with your
Increasing the Mirapex typically causes increased augmentation in a very short time. Alternative choices include other anticonvulsants such as Lyrica (usually much less sedation than Neurontin).
It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor. These books go over travel in great detail, especially the patient one.
Sent: Wednesday, June 09, 2010 7:31 AM
Subject: Asthma and RLS?
I have RLS and I am not on a treatment right now. I have asthma that is triggered by allergies. I took Zyrtec and my RLS kicked in fast and furious. I take Symbicort and Xopenex, for my asthma. What can I take for allergies that will not trigger my RLS?
You can use Claritin (available OTC and in generic form), Clarinex or Allegra (available in generic prescription form) for your allergies. Zyrtec often works for many RLS patients but it does cross into the brain so can worsen RLS symptoms for some patients.
Sent: Sunday, June 13, 2010 7:43 AM
Subject: Involuntary foot movements
My RLS has settled into a new and different pattern over the last few years. My feet will involuntarily bend upwards or contract (toes up and spread, heel down, very hard jerk) every 30 seconds or so. Sometimes it is just the foot that moves, other times my whole leg jerks. I often wake up in the early morning with this problem. Has this been reported by others with RLS? Is it possible that it is another condition? My RLS meds (Vicodin, mostly) do stop the movements. It's 9:30 am and these contractions woke me up this morning around 8 am and are still occurring as I write this.
female, 58 and have had RLS symptoms daily now for over 15 years.
Four other family members have RLS. My sister has fibromyalgia.Has there been any evidence that the gene for RLS is found
more frequently in Native Americans? I am a quarter Cherokee and Choctaw from my
mother. All the RLS that I know of is on her side of the family going back to my
The leg jerks that you are experiencing are called PLM (Periodic
Limb Movements) and are very common in RLS patients. About 85% of RLS patients
experience these leg jerks but mostly they occur while asleep so are only
appreciated by the bed partner. They typically respond to dopamine agonists like
Mirapex or Requip but we generally suggest treating them only if they are very
Very few studies have been done on native Americans so we really do not know the frequency in this population. However, the gene for RLS (and frequency of sufferers) seems to be highest amongst those of northern European descent.
Sent: Tuesday, June 15, 2010 10:20 PM
Subject: Falling with Requip?
In February my neurologist put me on Requip. The dosage is 0.25 mg. I take one tablet in the morning, one in the afternoon, and 2-3 at bedtime. It really hasn't improved my symptoms but the doctor wants to stick with this drug as the new gold standard in RLS, and says my dose is low and can be increased if needed.
Shortly after taking it, I had an episode in which I was wide awake in bed and suddenly and without warning fell out of bed and injured my eye. I didn't even recall being on the edge of the bed and about to fall. One minute I was laying there, the next my body slammed on the floor.
This morning, I was sleeping and fell out of bed. I wasn't awake and the last thing I remember is the dream I was having. This time my nose is bruised up and pretty tender. Would any of this be an effect of Requip?
Also, in February I had an EEG which was "consistent with partial epilepsy" and involved the left posterior temporal lobe. I don't know if the falling out of bed episodes are seizures or related to Requip. I am taking Lamictal 150 mg/twice a day and tapering off the Tegretol I've taken for over 15 years. The doctor doesn't know if the falling is caused by Requip or seizures, but I have never had experiences like this before. I don't drink so I'm not clumsy or disoriented when it happens or staggering around.
I never fall like this during the daytime, only in the early morning. Do you have any advice? I'm really starting to feel beat up, physically and emotionally.
If your current dose of Requip is not helping sufficiently with
your RLS symptoms, you should speak to your doctor about increasing the dose or
changing to another dopamine agonist such as Mirapex. If these drugs do not
help, then other classes of RLS drugs should be considered.
It is difficult to say whether Requip is the cause of your falling out of bed problem as this is not a common issue or adverse effect of that drug. They only way to be sure is to stop the drug and see if the problem goes away.
Sent: Wednesday, June 16, 2010 10:34 AM
Subject: Restless leg syndrome
I was diagnosed with severe case of RLS after being able not to sleep and my leg pains worsen. I first went to the doctor and ended up seeing a P/A and I told her my symptoms, and that I had done research and I think I have RLS. She called me a liar and an addict, cause I was asking for something to help with pain or help me sleep, since I haven't slept in 2 days. So for the next 6 months I went crazy! I thought it was just me being crazy.
So I finally went out on a limb and did a sleep study and they said I had a severe case of RLS, 10% sleep efficiency with 376 leg movements in a 4 hour sleep. Went to a new doctor with results and he prescribed me to Requip 1 mg. It helps me sleep at night, but at work (I'm a design engineer) I sit on the computer and design building and universities, my pain gets worse and worse tell I have to sit on my legs and make them numb, which in turn makes them hurt more.
So I went to the doctor and told him about the day time pain. He just bumped up my dosage to 2 mg ( only being on it 2 months) and told me to take Flexeril. He had prescribed it to me at first. I told him that the muscle relaxant has nothing to do with my pain. I am afraid of losing my job because around lunch time the pain gets so bad that I would rather have no legs than try and tolerate this pain.
I have tried Tylenol and ibuprofen and nothing is helping. I do not know where to turn or what to do. I asked my doctor for a mild pain killer and he denied me. I am going crazy. What do you recommend? should I go see another doctor about medication to make it through the work day?
It sounds as if the Requip is doing a reasonable job at treating
your evening/nighttime RLS symptoms which is all that one dose of Requip is able
to do (each dose last only 6-8 hours or so). Since you sit a lot at work, you
will likely need another dose (or 2) earlier in the day (taken about 1-2 hours
before the onset of symptoms). This should take care of your RLS symptoms if
Opioids work well for RLS but should only be taken when other RLS medications do not help.
If your doctor will not work with you on the above recommendations, then you should find one (perhaps a specialist like a neurologist or sleep specialist) who has a better knowledge of treating RLS. It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor and teach him more about the correct way to treat RLS.
Sent: Monday, June 21, 2010 6:07 AM
Subject: Rotigotine and pregnancy
Do you know if the rotigotine patches (Neupro) are cat C as regards to RLS and pregnancy like Requip and Mirapex? Or maybe cat. B like Dostinex? Has this been researched yet?
It is category C.
Sent: Jun 27, 2010 01:38:55 PM
Subject: Varicose veins, acupuncture for RLS?
Do you feel that varicose veins in your legs can cause RLS? And do you know whether acupuncture can help RLS?
There are some doctors (mostly vascular surgeons who
perform this surgery) who believe that varicose veins are associated with RLS
and that treating them with surgery is helpful. There have been a few
uncontrolled studies that support this theory but so far it has not really been
proven (with proper studies) that there is any association between RLS and
varicose veins and that treating them is of any benefit.
There is no proven benefit showing that acupuncture helps RLS.
Sent: Jun 29, 2010 09:55:38 AM
Subject: Pregnancy & RLS?
I am 44 years old and have been treated for severe RLS for many years now. I have tried a few drugs but found that Requip worked best until I developed neuropathy in my legs then had to be started on Neurontin as well. I was getting complete relief and felt like my life was given back to me until I recently found out I was pregnant. I had to come off both meds and am now taking iron supplements, magnesium, B 12 shots, calcium and folic acid, I am still suffering and don't know what to do.
I know my neurologist will restart the meds if I wish but am so afraid as
drugs are class C for pregnancy. I would greatly appreciate any advice as
I have a feeling this is only going to get worse during the pregnancy.
There are few choices for pregnant RLS patients as most all the drugs are category C or worse. The only drugs that are category B and work very well for RLS are methadone and oxycodone (at low dose). You should discuss trying these drugs with your doctor.
Sent: Jul 1, 2010 02:33:17 AM
Subject: Changing Requip to Mirapex, what dose?
I am from the UK, and have just found your website. I have suffered from severe RLS for the last 5 yrs, and have been taking ropinirole, but have had to increase the dose to 2 mg for the last 6 months, which does work, but not all night. I read in your book that Mirapex has a longer half life, so I took your book to my doctor, and have been given Mirapex, but only the starter dose of 0.125 mg, which hasn't worked.
Do I have to stay on the starter dose and gradually increase, which means
sleepless nights, or can I increase immediately. I only started them last night.
If not, can I take the starter dose of Mirapex, but also a lower dose of
at the same time, and adjust the balance as I go?
Unfortunately doctor's don't seem to know much about RLS and won't
prescribe opioids. I know morphine works, because I had a hernia operation and was
morphine and experienced no RLS.
Mirapex is 2-4 times more potent than Requip so the equivalent dose would be .5 mg - 1 mg in order to replace your Requip dose. We usually start a little lower (like at .25 mg) and increase the dose every 5 days. In the interim, you can ask your doctor for hydrocodone or tramadol to treat your RLS symptoms that are not taken care of by the Mirapex.
Sent: Jul 1, 2010 03:10:03 PM
Subject: New drugs for RLS?
Are you aware of any groups in Ontario? I have been prescribed Mirapex for RLS and Lorazepam for insomnia. I hesitate to take either until I am desperate as both from what I have read can have adverse effects after prolonged usage and since both these conditions have been with me for more than 10 yrs, I know anything I take will have to be for prolonged periods. Are there any new medications out specifically for RLS?
The RLS Foundation has a list of all RLS
All drugs have adverse reactions in some patients. It is still worth trying Mirapex as many patients do very well with this medication, even in the long run. Lorazepam does have a tolerance/dependence potential if taken daily. Zopiclone is a safer alternative for a sleeping pill (that is all lorazepam does for RLS) if needed.
Neurontin or Lyrica are alternatives but also have their own set of side effects.
Sent: Jul 2, 2010 12:21:11 PM
Subject: Difficult RLS patient
My father, who is 87, has been suffering from RLS for several years. In the past, he was able to find some relief with various drugs but they all stopped working after a while. He also has epilepsy but is otherwise in good health. The problem he is facing now is that he is so sleep deprived that he is rapidly going downhill with symptoms of depression, anxiety and utter fatigue.
Every night he awakens several times and has to walk around for about half an hour. The docs don't know what to do anymore other than to give him Klonopin, which he said has no effect on the RLS and only makes him more fatigued. He has been tested for anemia. Anti-depressants only make the RLS worse. Up until a few months ago my dad was cheerful, translating poetry, playing chess and taking walks. Now when I talk to him, he has slowed thought processes, can't leave the house due to fatigue and is extremely tense, worried about the future.
Any advice? Is this something that he's just going to have to live with? I'm afraid he's going to end up in the ER, psych ward or an institution.
Klonopin is not an RLS drug but does help RLS patients
fall asleep (which is why your father is groggy with this medication as it also
lasts very long due to its 40 hour half-life).
It is hard to give you any advice as I do not know which drugs he has tried in the past.
Sent: Jul 2, 2010 11:26:36 PM
Subject: RLS worse off opioids?
Over the last 45 days (30 of which I used to get from 50 mcg Duragesic for back/leg pain to 0 mcg Duragesic) I have weaned myself from Duragesic 50 mcg every 48 hours which I have used for 4.5 years. I decided against my pain clinic doctor wishes to stop the Duragesic for back pain. I did not think it helped that much anymore. He said I would find myself in a lot of back and leg pain from my failed lumbar fusion of 2003.
I have found my Physician to be right on. What do I do about my total loss of control of my RLS symptoms I get in my legs and arms? Mirapex at.375 and .50 in the evening no longer works. My neurologist has suggested .50@ 2 pm and1.0@ 8 pm. Nothing seems to work now. I have lost all control of my RLS symptoms. As I await a trial of a spinal cord stimulator for my back and leg pain.
WHAT CAN I DO ABOUT THE RELENTLESS RLS SYMPTOMS? I have used 5 mg of Lorcet 3x DAY TO HELP WITH DURAGESIC WITHDRAWAL AND NOW RLS at times.
Suffering in Maryland
It is clear that your Duragesic patch was treating your
RLS symptoms (which most potent opioids do very well) and decreasing the dose is
now causing a lack of coverage for those RLS symptoms.
You could increase the Mirapex but that does expose you to a greater potential for side effects from that drug. An alternative would be to add Neurontin or Lyrica which help both with nerve pain and RLS.
A Reply from Kathy P.
Sent: Monday, July 26, 2010 5:30 PM
Subject: out of control RLS in legs and arms
Since emailing last after stopping my Duragesic for failed spinal fusion, I agree that the Duragesic was indeed covering my RLS symptoms. Now my Mirapex of .5 mg @ 2pm and 1.0 mg @ 7pm no longer controls my RLS. I did try the Lyrica but can’t afford the weight gain as I have already had two heart surgeries. It has been a difficult 8 weeks. I am at a loss as what to do and do not see my neurologist till 9/2/10.
I am awaiting a temporary spinal cord stimulator trial
and am wondering is it possible that this device could also help my RLS as well
as my spinal problems. Also, could I switch to Requip and have it help like
Mirapex did for almost 10 year? If so, what equivalent dose?
Suffering in Maryland
Lyrica is a reasonable option and unless you had a major
weight gain, you might want to reconsider using it again. If that is not
possible, then it would be reasonable to consider going back on opioids (it does
not have to be Duragesic but others may work quite well for both your back pain
The spinal cord stimulator is unlikely to help your RLS but anything is possible. Changing to Requip is also unlikely to help but the equivalent dose of Requip is about 2-4 times that of Mirapex (you would need Requip at 2-4 mg to replace 1 mg of Mirapex).
A Reply from Kathy P.
Sent: Monday, August 02, 2010 8:22 PM
Subject: RE: out of control RLS in legs and arms
Thank you for the Lyrica suggestion. I am having some success with it in the afternoon at 100mg. However as I sit here tonight I again am having severe symptoms with 250 mg taken at 8pm. I am wondering at what dosage would I need to take to stop these severe pm symptoms. I have also stopped all Mirapex at this time after taking 50 mg in the afternoon and 100 mg in the evening.
If you just stopped Mirapex, you can expect marked worsening of your RLS for the next week or so. Typically, potent opioids are needed to treat this acute worsening. Lyrica is usually not up to that task but works better once the withdrawal of Mirapex effect is over. Doses of Lyrica are typically in the 75-300 mg range but some studies have used doses up to 450 mg.
A Reply from Kathy P.
Sent: Monday, August 09, 2010 2:38 PM
Subject: RE: out of control RLS in legs and arms
Thanks so much for the info on Lyrica etc. It has now been one week since stopping Mirapex. I have been controlling the symptoms with Lyrica 150 mg at 3 pm and 300 mg at 8 pm. I have also used Lorcet 5.0 and 7.5 mg with the respective doses of Lyrica. I have finally got some rest after 8 weeks of uncontrollable symptoms.
My question now would be: at what point could one expect to control the symptoms with just Lyrica and no Lorcet? And should I go back on Mirapex or just stay with Lyrica to control my RLS symptoms?
Rebounding in Md.
I believe that you stopped the Mirapex due to side
effects (insomnia?). You could restart it a lower doses (starting with .125 mg)
and slowly work up the dose until you get side effects, then back off. It is
possible that with the Lyrica, you might do well with a very low dose of Mirapex
(try to avoid the temptation of increasing it too high).
You might be able to control the RLS with no Lorcet after 7-10 days off Mirapex but no one can predict who will respond to one drug alone. However, it will be easy to see if that is the case as you try to withdraw the opioids slowly over the next week or so.
A Reply from Kathy P.
Sent: Monday, August 09, 2010 8:59 PM
Subject: RE: out of control RLS in legs and arms
Sorry for the confusion in my emails. However, I had stopped the Mirapex due to augmentation and have replaced it with Lyrica the last 9 days. The Lyrica and Lorcet are doing quite well the last five days and I am looking forward to trying just Lyrica for the RLS eventually. Would that be a viable option?
Thanks in Md.
If you had augmentation, I would be very careful trying a dopamine agonist again. I have had some patients go back on low doses and be fine (which might work with Lyrica) but the augmentation problem really likes to come back so proceed with great caution if you to retry them.
Sent: Wednesday, July 07, 2010 9:59 PM
Subject: RLS augmentation with Requip?
I'm 42 on Requip 3 mg a day. I'm finding my symptoms of RLS are happening more and more often now even during the day. While driving, just sitting down during the day, etc. Does RLS get worse with caffeine & alcohol usage?
My doctor doesn't know much about RLS, and I'm wondering if next step is a Neurologist. My older sister (51) has RLS also, and as far as we can tell, our Dad did too (he passed in '01). My Mom always used to say she couldn't sleep with him in the same bed cause he kicked so much.
It sounds as if you have developed augmentation from
taking Requip. Augmentation is a worsening of RLS caused by taking a dopamine
agonist like Requip and Mirapex. One of the hallmarks of this problem is
increased RLS symptoms earlier in the day. The treatment for this problem is to
change the Requip to another class of RLS medication (anticonvulsants or
Caffeine and alcohol usually worsen RLS symptoms.
Sent: Tuesday, July 13, 2010 10:04 AM
Subject: Rotigotine Patch
Has there been any updated information with regard to the Rotigotine Patch. Is it being used, and if so, how much success is it having. I'm grateful for any information regarding this.
Neupro (rotigotine patch) is still being used in Europe
where their equivalent of the FDA has no issues with the patch’s quality
(whereas the FDA here wants an entirely new patch that has no possibility of the
drug precipitating out of the patch). The results of field use in Europe are
very good as are ongoing studies with rotigotine.
The company that makes the drug (UCB) is currently working on a new patch that hopefully will pass muster with the FDA. The timeline is uncertain (as are all things that pass by the FDA) but we are hoping that this drug may re-emerge in the next 1-2 years.
Sent: Tuesday, July 13, 2010 12:32 PM
Subject: RLS Medications
Over the past 14 years, I have used three different medications for RLS—Klonopin, Mirapex, and Requip. After a year or so, Klonopin became ineffective. Then I used Mirapex for 11 years, gradually increasing to a dosage of 1.5 mgs per day. However, throughout this period, this drug has adversely effected my quality of life—I am constantly sleepy. Sometimes I fall asleep while sitting on the porch after dinner drinking a glass of wine with my wife. Recently I switched to Requip hoping the drowsiness problem would dissipate. It didn’t. In fact, I had to increase my dosage from 1.5 mgs of Mirapex taken only at night, to 4 mgs of Requip (one mg every 6 hours) and I am even more drowsy.
I have read that smoking one joint of marijuana in the evening will enable an RLS sufferer to get off of drugs and sleep like a baby. If so, where can I go to live that allows residents to legally buy marijuana for medical purposes? Do you have any alternative suggestions to cope with RLS that would improve on the adverse effects on quality of life caused by taking Mirapex and Requip?
Clyde E. J.
You are correct about marijuana helping RLS symptoms. It
has never been formally investigated as the drug is mostly illegal but there are
many reports about its remarkable benefits for treating RLS with only minimal
intake. I can only speak about California (my home state) where marijuana is
legal for medical use with a prescription from a doctor (which apparently is
quite easy to obtain). However, there is still a legal issue with this as the
drug is only legal for medical use by state laws but not by federal laws so the
federal government could still potentially prosecute you.
It is not surprising that you required a much larger amount of Requip to replace your Mirapex as Mirapex is about 2-4 times more potent (on a mg basis) than Requip. As you have already found out, both drugs tend to have similar side effect profiles.
A better solution to trying marijuana may be to try another legal class of RLS medication. The anticonvulsants (Neurontin, Lyrica) or painkillers (tramadol or opioids) work very well for most RLS sufferers. Discuss trying these medications with your doctor.
Sent: Friday, July 16, 2010 3:31 AM
I would like your opinion on the medication I have
started taking which at the moment is working very well. I take tramadol 50mg
about 3 hours before bedtime. This gives me a restful evening. I also take 1
zopiclone 3.75 mg about 1 hour before I go to bed as the tramadol keeps me
I am so pleased with the result but realize it probably won't last, then I am wondering what to do. Can taking Tramadol long term do any harm? I am not an addictive person.
Your regimen of drugs for treating your RLS and insomnia seem quite reasonable. There is no reason to believe that (barring other factors that might worsen your RLS) your treatment should not continue working well for the foreseeable future. At the low dose of tramadol, it is unlikely that you should have any difficulty over the long term.
Sent: Sunday, July 18, 2010 5:49 AM
Subject: Requip 3 times a day?
I would like to know if Requip can be taken 3 times a day for RLS? It helps me a lot at night and doesn't cause me a lot of problems. I do take Wellbutrin SR in the daytime. I also take Buspar 4 times a day. This combination works very well for me.
Although Requip is only approved for use once daily in
the evening for treating RLS, many specialists use the drug 2 or even 3 times
per day for patients with daytime RLS symptoms.
Wellbutrin and Buspar are good anxiety/depression medications that do not worsen RLS but they also do not really help RLS (except by reducing anxiety or depression).
Sent: Sunday, July 18, 2010 7:46 PM
Subject: Restless Legs and Europe Plane Trip
I have restless legs and take 1.5 mg of ropinirole (Requip) each night, in 3 doses, .5 mg each time. This usually takes care of my restless legs. I also take .25 mg occasionally in the afternoon if my symptoms worsen. I will be flying from San Diego to Amsterdam and am wondering how to manage my RLS on the flight.
I frequently fly between San Diego and Chicago and take .5 mg an hour before the flight and that takes care of it for that length of a flight, plus always sitting in an aisle seat and moving around the aircraft. With such a long flight coming up, I'm worried that I'll be a crazy person or else drugged the whole flight. Any suggestions?
You could take the Requip .5 mg 1 hour before the flight then again about 6-8 hours later. I usually recommend keeping an opioid (like Vicodin which many people have on hand from a previous surgery) on hand as that works within 15-30 minutes and lasts about 4-6 hours. It is very good for “RLS emergencies” like being stuck on an airplane with the fasten your seat belt sign on and legs that want to move.
Sent: Monday, July 19, 2010 8:14 AM
Subject: Lyrica and RLS?
I just came from the neurologist. He believes I may have fibromyalgia and said the course of treatment is Lyrica. He said improvement with Lyrica is also used as comfimation of the fibromyalgia diagnosis. lf it works, that would mean I have fibromyalgia.
I am very hesitant to take this medicine for fear it
will make my RLS worse. Is this a bad drug to take when you have RLS?
Lyrica is a drug that is currently under investigation
for treating RLS patients. I have used this drug extensively and it works very
well to relieve RLS symptoms in many patients. Therefore, you may get a 2 for 1
bonus if you go on this drug for your fibromyalgia.
Unfortunately, Lyrica has many positive effects and simply feeling better after being on it in no way clinches the diagnosis of fibromyalgia. For example, if It makes your RLS better, you may also feel better but clearly that would not be due to its effect on fibromyalgia.
Sent: Tuesday, July 20, 2010 10:35 PM
As a sufferer of RLS, I would like to know the maximum dose of Mirapex?. I am taking .5 mg four times per day. This does not seem to hold me . Is there any new medication on the market?
I have read about the patch is it available in Canada? Sometimes I feel I am going insane & don't know what to do.
74 yr old Canadian retired R.N.
The maximum dose recommended by the FDA (which is based
on the studies performed to get the drug approved) was .5 to .75 mg for one
evening dose per day. We do go much higher than that dose but most patients find
that doses higher than 1-1.5 mg provide no additional benefit. It is likely that
most patients will not benefit from doses greater than .75 mg so higher doses
should be taken with great caution. We do treat patients with daytime symptoms
with doses of up to .75-1 mg as much as 3 times daily.
In your case, it is quite possible that you may be experiencing augmentation from your Mirapex. This is a worsening of RLS symptoms due to taking a dopamine drug such as Mirapex and typically requires the patient to take a higher dose that helps only temporarily (and then pushes the patient to take further increased doses). If that is the case, then taking higher doses is counterproductive. Instead, changing to another class of RLS is a better idea.
The Neupro patch is currently only available in Britain and Europe but may come back to the USA in the next 1-2 years. There may be less augmentation with this drug but then you are also being exposed to drug around the clock when you may only need it part of the day.
Sent: Wednesday, July 21, 2010 4:34 AM
Subject: DIAZEPAM WITHDRAWAL RLS INSOMNIA
I am 67 years old and I have been forced to withdraw from taking a 10 mg diazepam tablet each day which I have taken for the last 35 years. I first took it for anxiety and then for severe chronic back pain. I have successfully withdrawn form diazepam although it has taken me 15 months because I have felt so unwell.
As I reduced to 1 mg diazepam a day, my legs started to jerk and twitch when lying down, and I developed awful insomnia getting around 13 hours sleep each week. This has continued for 7 months and I feel so anxious and desperate.
I managed to get to the doctors 5 months ago and he gave me temazepam to take to help the sleep. He said to also increase the diazepam back to 2 mg and come off slowly again. He said that if I only took one temazepam tablet (20mg) every three to four nights that they wouldn't be addictive. I have now stopped taking both these drugs (20 days ago on July 1st 2010) and find that I am feeing so ill, but also have awful PLMD and barely any sleep.
Will the PLMD/RLS and insomnia go away eventually when the benzodiazepines have left my system, or have they left me with a new unbearable problem? I can barely cope with life. Withdrawing seems to have affected my dopamine and serotonin. Will it settle down again soon? I so need some encouragement as there is no-one who understands where I live.
The only other medicine I take is omeprazole for nausea.
It is a little difficult to figure out what exactly you
are suffering from. The leg jerks are likely PLM’s but you do not describe any
symptoms of RLS (RLS is a sensory condition with a motor response to the
sensations of needing to move while PLM’s are involuntary jerks that occur more
often asleep rather than awake).
In any case, withdrawal from benzodiazepines should not bring on RLS or PLM. It is therefore difficult to decide what is going on with you and what will happen.
Sent: Saturday, July 24, 2010 1:24 PM
Subject: Newly diagnosed
I have been dealing with RLS for many years, but no one could tell me what was wrong with me. I have been told I have had bursitis, sciatica, spinal stonosis and of course that there was nothing wrong with me. I had surgery for the spinal stenosis which I think made my RLS worse. I finally started researching and when I found RLS I was ammased that no doctor had ever mentioned it.
My primary physician finally gave percocet after my complaining and his not finding anything wrong, now my primary is deceased and the new doctor feels there is no reason to ever use a narcotic, so I am back to no sleeping. My symtoms start around 12pm most every day, so any time past noon I have my boss at work asking me what is wrong with you can't you sit down and get to work.
I finally went to a sleep clinic and the doctor said RLS and put me on Requip. The first night I thought my head was going to blow up my sinsus were congested and draining to the point I was gagging and then the next day I starting biting my nails, that was nothing I had ever done before. After the 2nd day same 2 initial problems and couple more added not really sleeping, very anxious and I want to buy a pack of cigerettes, I have not smoked in over 4 years. Is all this normal?
I have tried sleeping pills and anti depressants. What
would be the next course of action in your opinion, will these side effects from
the Requip sub side when I get to the dosage the doctor wants, they seem to be
getting worse not better. I am back to the doctor in 2 weeks.
Requip is currently the first line therapy (in addition
to Mirapex) for RLS. The side effects that you have experienced are amongst the
common ones that we see with dopamine drugs (Mirapex, Requip). You did not say
what dose you where taking as your problems may stem from starting with too high
a dose (starting dose should be .25 mg).
If you can't tolerate the dopamine agonists (and also Mirapex), then painkillers like Percocet are a reasonable choice (anticonvulsants are the other choice). However, we prefer prescribing the oxycodone in Percocet by itself as the acetaminophen in Percocet does not help RLS and thus can only cause side effects without any possible benefits. We also use lower potency painkillers such as tramadol and other high potency ones like methadone (this often works better than oxycodone but doctors do not like to prescribe it as they are unfamiliar with it).
It may be helpful to get a copy of my RLS book for patients, RLS: Coping with your sleepless nights as it goes over these issues at length. I also have an RLS book for doctors that may help guide your doctor on how to treat your RLS.
Sent: Saturday, July 24, 2010 3:02 PM
I have had fairly severe RLS since a teenager (I am now in my 50s) (by severe, I mean symptoms almost daily and for several hours most nights) and have tried many things. As a teenager, I would bend my legs under me until they would 'go to sleep' and then I would try to fall asleep before my legs 'woke up.' As an adult, I tried high doses of folic acid, which seemed to help a bit. A doctor once gave me an anti-depressant, but I was too sleepy the next day so I never continued it.
A few years ago, I decided to try a gluten-free diet for
something else and, about 2 wks later, I was intrigued to note that I hardly had
any restless legs symptoms any more. The symptoms were still present but much
more bearable. Then, a few months ago, I began taking Alpha-Lipoic Acid at
bedtime, and since then, I have had even more minimal symptoms. So, I was
wondering if anyone else has tried a gluten free diet or Alpha-Lipoic Acid with
None of these dietary remedies have been tried in any
systematic way for RLS. There are many anecdotal reports of various diets and
other non-drug treatments working very well of individual patients however, they
rarely work when tried by others. I have many RLS patients who have been on
gluten free diets with the majority of them finding no benefit. I have had no
experience with alpha-lipoic acid nor is there any evidence in the literature or
even anecdotal reports of its benefit on RLS.
We will post your email letter for others to view and see if any other RLS sufferers have noted benefit from those interventions.
Sent: Tuesday, July 27, 2010 10:30 AM
Subject: RLS Help
I've had what I consider severe RLS for about 4.5 years now and I have it 24 Hours a day. I've tried everything from Requip, Mirapex, Neurontin, Ultram, etc. The meds either don't work or I get the major side effects from them. I tried some herbal stuff as well and nothing. Since my doctor said I pretty much exhausted every other meds, I was put on two 5-325 Percocet tablets at night to sleep.
Over the past 5 months the RLS during the day has become unbearable, my work is being effected and my quality of like pretty much stinks right now. I called my doctor a while back and was told that he is just concerned with my sleep quality and just get up and walk when the condition gets to bad. Well I'm getting up from my desk about every 10 -15 minutes now because its horrible. I go back to see him next week and I'm not sure if there's anything that can be done but living with this is pure hell.
It is hard to advise you as you have serious RLS
problems and the information that you have described is incomplete (the complete
version is likely beyond the scope of this website). However, other choices
include adding Lyrica and changing Percocet to methadone (which may need to be
taken up to 3 times per day to control your RLS).
Most RLS patients can achieve excellent control of their RLS with proper treatment.
Sent: Wednesday, July 28, 2010 5:58 AM
Subject: Severe RLS-advice needed if possible
I don't know if you remember, but you helped me once before. I know you are a very busy man and understand if you can't take the time to answer my email. I wish I could visit your practice, but I live in Pennsylvania. First the basics: I am a 33 year old male with no other health problems than those listed; other than the fact that I am about twenty five to thirty pounds over weight. I am a bipolar II patient with severe refractory restless legs syndrome. It was under control, but I still always suffered.
Lately however, within the last few weeks, my RLS has gotten worse and worse to the point where I am almost disabled. It is now accompanied by some other odd symptoms; joint and bone pain, numbness and weakness in hands and legs along with tingling; leg cramps; heat flashes; and fatigue to the point where I almost can't do anything at all. I do see a neurologist and a psychiatrist as well as a family medical doctor.
Listed below are the meds I take and a sleep study has
been ordered. If you have any advice please help. Methadone has been a life
saver, but my neurologist will not increase the dose, as he thinks I can try
other meds like Lyrica instead, while still maintaining my dose of methadone. I
have tried Requip, Mirapex, cymbalta and countless other drugs to no avail. I
have to wait to get into to see my neurologist for at least another month and he
will probably only switch me from Neurontin to Lyrica.
I am on the following:
Methadone 30 mg a day (works wonders-at least it did, up until a few weeks ago)-I take 10 mg three times a day
Neurontin 2400 mg - I take 800 mg three times a day
Depakote 750 mg - I take 500mg in morning, 250 mg at night
Klonopin 0.5 mg a day
Ambien 10 mg at night for sleep
I was under stress at work, but that has subsided, but I have never heard of stress creating these kind of symptoms.
It is not clear whether your new symptoms are really RLS
related. Most of them do not sound as if they are being caused by your RLS. To
attribute your new symptoms to RLS, they should be occurring while your usual
RLS symptoms are active and should go away when you improve your typical RLS by
movement or walking. If they do not follow that pattern, then it would be very
hard to blame the odd symptoms on your RLS and other problems such as neuropathy
(which does seem to occur more often in RLS patients but is treated the same
whether it occurs with or without RLS) should be explored.
As far as your worsening RLS symptoms, there are only a few choices. You should not increase the methadone as you are at the ceiling dose of that drug already. Changing to Lyrica may be helpful and is worth a try. Even though Mirapex and Requip did not work before (perhaps you tried them on their own?), they might work better when added to a comprehensive RLS drug regimen.
Sent: Thursday, July 29, 2010 6:24 PM
Subject: RLS gone after Iron Infusion
I had suffered with RLS for years. It just got worse and worse to wear I couldn't even sit and watch TV at home. I wouldn't even think about going to a movie. Bedtime was
to be dreaded. And taking Benadryl to help me sleep only made the RLS worse. I went to my Dr and told him of my RLS, he suggested we do an iron panel of lab work. Not just a hemoglobin and hematocrit, but a Serum Iron, Total Iron Binding Capacity, and Ferritin.
My hemoglobin was borderline at about 10. But my other iron labs were rock bottom low. He sent me to a hematologist who did one Iron Infusion. My RLS symptoms were gone in 3 days. That has been 4 years ago. There is nothing better than a big cozy bed and a good nights sleep.
Iron infusion therapy has been shown to be extremely helpful to a majority of RLS patients who receive one. Unfortunately, this is not accepted therapy yet and is still in the investigational stage. Most RLS patients get temporary relief from a few months to a few years then relapse but will respond similarly to a repeat iron infusion.
Sent: Saturday, July 31, 2010 12:59 PM
I have RLS. But I do not have the urge to move my legs. I have the crawling, creeping, burn sensation when I sleep and tremors to my upper body. I have been taking mirapex for approx 6 years, when augmentation started . I was taking .375 mg at bedtime. I was switched to Requip .25mg which did not work. I have been taking 1mg of Ativan last 18 days, but would like to switch because of possible addition. It has worked ok. Is it possible to go back to Mirapex and hope the layoff will make it work for me again?
My first concern is that it is difficult to impossible
to diagnose RLS without the urge to move being present so your diagnosis of RLS
is clearly in question.
If you do have RLS, switching from Mirapex .375 mg to Requip .25 mg would definitely not help. The equivalent dose of Requip would be .75 mg to 1.5 mg so your dose was way too low to be effective. The layoff from Mirapex will assure that it will work well but only for a while. If augmentation occurred once, it will likely occur again at similar doses but much more quickly.
Ativan is not a RLS drug but just helps patients fall asleep regardless if the problem is RLS or something else (like back pain) that is preventing sleep.
As this point you might want to try higher doses of Requip or go to another class of RLS medication (anticonvulsants or painkillers).
A Reply from Jim W.
Sent: Monday, August 02, 2010 5:56 AM
Subject: RE: Mirapex
I do feel the ants crawling on the inside of my legs, by moving my legs it stops briefly and returns. This occurs only at bedtime when lying down. I have no problem when sitting. Last night I took .75 of Requip and felt minor sensations In my legs, but did not get much sleep. This might be transition from Ativan to Requip. If the same occurs tonight I will go to 1 mg the following night.
Is their anything I can take to sleep if this persists?
When I was on Mirapex .375, I had no problem sleeping.
Ambien or Lunesta would be good choices.
Sent: Sunday, August 01, 2010 5:36 PM
Subject: RLS Cause
Hi! I stumbled upon your website today, I wanted to send a message (and a plea to one of your writers who had a similar experience, Sandra B.) regarding aspartame. After 18 years of RLS pain and suspected fibromyalgia, quitting artificial sweeteners finally did the trick. I have tried quitting many types of things, or adding others etc... over the years. Then I saw a Dr's article about how aspartame poisoning can mimic RLS symptoms. I hope everyone who discovers this problem in themselves writes a complaint to the FDA. I am furious that I have suffered for so long due to a poison that is in over 6000 American food and beverage products. I barely need my Tylenol w/ codeine anymore. Researching aspartame and how it was "politically approved" makes me so angry. Thank you for listening.
We will publish your email letter on our website so that
others may benefit from your experience. However, despite a few articles about
the “evils” of artificial sweeteners like aspartame, there are actually very few
properly documented cases (many cases of problems may have occurred due to other
reasons) and they can greatly benefit patients with diseases like diabetes (or
even people with significant obesity).
No credible RLS specialist has ever documented that aspartame is causes RLS symptoms or can mimic it in any way. It is likely that there are people who are sensitive to this chemical and may have reactions to it (just as many patients have reactions to peanuts or other foods) but in general, reactions to artificial sweeteners like aspartame are quite unusual.
A Reply from Lori H.
Sent: Monday, August 02, 2010 12:27 AM
Subject: RE: RLS Cause
Thank you for your response, however you are incorrect in stating that reactions to artificial sweeteners are unusual. I agree that there are probably very few "properly documented" cases, and that is why I wrote to you. I hope others do document their findings and complain, as I am doing. Here are a couple of links.
Dr. Mercola has a good series with a lot of information. Here is the 3rd one:
You are also not correct in stating that no credible specialist has ever written that aspartame can mimic the symptoms of RLS. That is how I made this discovery, through a doctor on a RLS support site.
Thanks though, for publishing my findings. Even if you don't believe them. Some day you will.
I did not say that I did not believe your findings that aspartame might cause harm to some people using it. I am sure that just like almost any product, some people will have adverse reactions (for example, many people die from peanut allergy each year but that does not stop the majority or people from enjoying the benefits from eating peanuts or their products). The youtube videos mostly chronicle anecdotal reports about the adverse effects that may occur with aspartame but for proper scientific evidence, they must be properly documented as many of them could have occurred due to other problems.
Even if you accept that there have been 10,000 reported
cases of adverse reactions, that is a very small percentage of the hundreds or
thousands of millions of consumed doses of the product. Sugar, which is what
aspartame is replacing, has been associated with many more adverse
problems…should we ban it? Virtually every drug causes adverse reactions in a
small percentage of users, should we ban all of them?
As far as aspartame being responsible for mimicking RLS symptoms, I would love to get some documentation on that issue. I know virtually all the real RLS specialists as we are a very small group. If you can get me the name of the doctor who found those cases, I will contact him to further educate me on this topic so that I can include it in my future books and articles on RLS.
Sent: Tuesday, August 03, 2010 1:40 PM
Subject: Severe RLS
My husband, age 71, suffers from daytime RLS. He doesn't seem to have a noticeable problem at night that I can see and he doesn't seem to be aware of it either at night. Sleeping isn't his problem. Sitting down in a chair, his legs never quit moving, up and down on the foot stool, ankle crossing constantly and is presenting a terrible problem during the day. I have checked the 15 pills he takes for various heart issues and nothing stands out as the culprit.
Listed for his meds are:
He has tried clonazepam with a 2-day hang over affect, carbidopa/levodopa 25/100 saw no change in 3 weeks, ropinirole 1 mg didn't see to have any affect when taken twice a day. The sedative family of medications seem to be the worst route to go. The dopamine receptor type seem to be very habit forming. Anticonvulsants meds haven't been tried yet. I know this is a total guessing game on what works.
Can you help with any suggestions?
Sedatives such as clonazepam are useless for daytime RLS
as the simply help RLS patients fall asleep without relieving symptoms.
Ropinirole should be started at .25 mg and increased slowly to a maximum of 4 mg
to see if they are effective. Mirapex would be an alternative if ropinirole does
not work out. The dopamine agonists are not habit forming.
Anticonvulsants or opioids would be the next choice of therapy.
A Reply from Martha D.
Sent: Wednesday, August 04, 2010 6:00 AM
Subject: RE: Severe RLS
He has been on 1mg ropinirole without any affect. How long should it take for ropinirole to kick in if it is going to help. I believe stomach problems were the side affects he felt with ropinirole and had to quit. I will encourage him to start again if there should be leg benefit in days. I might call the doctor. and see if Mirapex would be a suggestion.
The list of anticonvulsants are extensive is there one over the other he might benefit from, I do have Lyrica at home that was suggested for shingle relief if I needed, which I didn't.
Ropinirole will work with the first or second dose. We
advise increasing the dose every 5 days or so to diminish the side effects.
Nausea can be reduced by taking the medication with food (which also delays the
onset by about an hour).
Lyrica and Neurontin are the two best anticonvulsants (most studied) for treating RLS.
Sent: Tuesday, August 10, 2010 5:13 PM
Subject: RLS help
I am 16 and I have RLS I have found relief from the medication Oxycodone, my doctor is scared to prescribe me it do to dependence factors. what do you recommend I do?
Oxycodone is very useful for RLS but is not a first line therapy for that disorder. Typically, Mirapex or Requip are used first (although they are only approved for adults as no drugs have been formally and adequately studied in children).
A Reply from Mitchell H.
Sent: Saturday, August 14, 2010 5:01 PM
Subject: RE: RLS help
thanks for the reply. my doctor is trying gabapentin for me is that a good med? i still have RLS during the day would 5mg oxycodone be ok if i only used it for school witch is only 4 days a week and 3 hours.
By the way, my RLS is severe.
Gabapentin is a reasonable medication although sedation
is a significant issue which often limits its usefulness.
It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor.
A Reply from Mitchell H.
Sent: Saturday, August 14, 2010 5:15 PM
Subject: RE: RLS help
But what about the oxycodone? does 4 days a week only using once a day at 5mg sound safe? cause my RLS effects me during the day and makes it hard to focus in school.
Oxycodone is a reasonable choice but only after dopamine drugs (Mirapex, Requip), anticonvulsants (gabapentin, Lyrica, etc.) and weaker opioids have been tried (typically, in that order). You really should see a doctor who is more knowledgeable about treating RLS (especially in children).
Sent: Friday, August 13, 2010 4:29 PM
Subject: RLS help needed
I am in desperate need of your expertise, begging for help on my RLS I was told that you are the best from a web site WE Move.org.
RLS has affected my quality of life. I am a walking zombie, literally speaking. I don’t know how much longer I can take. My RLS has come to a point that I am having difficulties doing my desk job nor am I able to sit and relax, read a book, watch TV and do yoga , travel and lastly this is affecting my sleep. I am able to go to sleep but to stay asleep is impossible. I go to bed at 10pm and like an alarm clock I’m up at 2am wide awake and if I do fall asleep it may takes up to 2 hours by then I have to be up by 6am for work. I am exhausted
I have had RLS for at least 10 years, most of those years it has been mild until 4 or 5 years ago. My doctor had tried different medications nothing worked till we found Mirapex the wonder drug. However there was a price to pay, I develop a serious gambling addiction, became a compulsive spender and over eater which lead me to have to go off my wonder drug. I am happy to say that I no longer have the urge to gamble, compulsive shopping or overeat since being off the Mirapex.. My doctor put me on Sinemet CR 200/50mg 2 pills a day and these past 6 weeks being on this medication made my life a living hell.
Many nights of being awake I did a lot of research and
found that the medication for my anxiety, Paxil then to Effexor can increase the
RLS so under my doctor advice I wean myself off and in place I take vitamin B
100 complex, which is helping, also iron pills, magnesium and calcium, along
with potassium vitamins. I stopped drinking coffee or anything with caffeine
along with omitting sugar and alcohol to my diet. I am eating healthy first time
ever and before bed I take a nice relaxing bath. Since on Sinemet CR, I
developed argumentation morning noon and night. I now have pain in the legs
which I never had before. The more I take Sinemet the worse it gets.
I live in Manitoba Canada and cannot afford to go to the States for the help I need. I am presently waiting to get into the sleep clinic however the waiting list is 9 months to a year and a half to get in. My doctor is a GP, who is the greatest is not familiar with RLS and is doing the best she can with the tools she has. I have educated her on RSL. Whatever advice you give me I will give to my doctor.
I understand that you have some books on RLS and I will be purchasing them as soon as they become available, back log so I have to wait.
I am a proud person and have never begged for help in my life but I am begging now. Whatever information you can forward to me via email or mail information I would be forever grateful.
Winnipeg, Manitoba Canada
As you may already have learned, we no longer prescribe
Sinemet to be taken on a daily basis as almost 100% of patients will develop
augmentation within a few weeks to months. We typically suggest getting off the
Sinemet (which I generally do cold turkey but some specialists advise to taper
it slowly). Stopping the Sinemet will cause a marked worsening of your RLS
symptoms for a week or so which we manage by giving potent doses of opioids
(usually oxycodone or methadone).
Once your symptoms are under control off the Sinemet, starting another drug such as Lyrica should help you to reduce or eliminate your need for the opioids.
You can use Wellbutrin (bupropion) for anxiety as it is safe for RLS although it may not work as well as the SSRI medications like Paxil and Effexor.
A Reply from Bev
Sent: Thursday, September 23, 2010 3:34 AM
Subject: RLS and getting of Sinemet?
I was on Sinemet and went off it cold turkey with the help of hydromorphone. My doctor tried gabapentin at three of the 300 mg a day with Tramacet (Ultracet in the USA) for pain. I tried it for one month and it helped me fall asleep but was still getting up during the night but augmentation was gone. My doctor then tried me on ropinirole .25 mg 2 or 3 hours before bed along with the gabapentin, but I am weaning my self off the gabapentin.
The ropinirole worked really well for 3 or 4 days now I'm waking up twice a night again so I'm gathering I may have to increase it. Along the way between Sinemet and the gabapentin and Tramacet I now have developed a burning of my right leg on the knee and calf with pain in the knee and right groin and get a migraine type of headache. Once I take the gabapentin and Tramacet this all subsides after 1 hour but after about 3 or 4 hours it comes back. Is this normal for RLS?
I'm used to the movements of my legs not pain like this. Also can I take the ropinirole during the day and is there a long acting one instead of the ropinirole? I have purchased your book and it is an great help I have also given it to my doctor and she loved it. She even ordered the book for doctors. Her and I have been working together on my RLS and have bee experimenting on trying different medications progress is slow but at least I'm getting enough sleep.
Winnipeg, Manitoba Canada
You can increase your dose of ropinirole (with the approval of your doctor) as .25 mg is the starting dose. We do treat patients up to 3 times daily for daytime symptoms. However, if you find that you have to keep increasing the dose (once you have stabilized on an effective dose), you should be concerned that augmentation may have occurred (just as it did with Sinemet) and you may then have to consider other medications.
Ropinirole does come in a 24 hour preparation called Requip XR but this is only brand name and should be more expensive than generic ropinirole taken 3 times daily.
Sent: Sunday, August 15, 2010 3:09 AM
Subject: Marijuana for RLS?
I've been suffering from RLS since I'm a child (my father has also symptoms). I've been taking Requip for two years now and I'm not satisfied anymore with it because it seemed to have worsened my RLS on a long term. I've already increased from 0.5 to 0.7 mg but I seem to have more RLS at the end of the night which makes finally my nights as shorts as before. Before I didn't sleep at the beginning of the night, now, I don't sleep from 3 o'clock in the morning!
I noticed that smoking cannabis helps for this problem;
I know it's not legal but in my case anything would be welcome! Is there any
study about it? Is it possible to take a medicine which contains this substance
so that we don't have to smoke it?
It could be that increasing the Requip may have caused
an increase in your RLS so further increases might worsen your problem. There
are other drugs to try like the anticonvulsants and the opioids.
Marijuana does help RLS but only when smoked or inhaled. There is a drug called Marinol which contains the active ingredient of marijuana (THC) but the doses are low and this drug has only a very modest effect on RLS.
Sent: Tuesday, August 17, 2010 9:25 PM
Subject: Mirapex changed to Requip?
I have been on 1 mg Mirapex for years now I an under stress and Mirapex does not work at night is it because of stress or do I need to need to change, my doctor tried to start my on .5 Requip it did no work can I take Mirapex until I work up with Requip. I understand it takes 4 to 5 mg to equal 1 mg Mirapex. Am I right? Please give me some advice my doctor is just a GP.
Typically, one should not take Mirapex while switching
Discuss increasing your initial Requip dose to about 2 mg then increase from there. The stress may be a factor and we usually suggest taking an opioid to help treat additional symptoms.
Sent: Wednesday, August 18, 2010 5:53 AM
Subject: RLS - what works for me!
I was on Requip and then on Requip XL for over a year. I ramped up to 12mg... yes, 12! And, even with that dose, I would still sometimes be in utter agony.
Since I finally figured out that the Requip was causing life-altering focus problems, I stopped taking it.
What really works for me now??? A heating pad! I tried it first on my lower legs but have found out that when I put it at the base of my spine, I am RLS free! I know these "cures" don't work for everyone, as I have tried many different ones, but this one does work for me! I hope that it will work for others, too.
Thanks for your letter. We will post it for others to see.
Sent: Wednesday, August 18, 2010 1:53 PM
Subject: Ultram withdrawal
I have been taking Ultram for two years, I think I am addicted so, I am tapering off from 200 mg to 100 mg but I am very nauseated in the morning until I take 1 of 50 mg.
I am not sure why you think that you are addicted to Ultram as you are on an average dose that usually does not cause tolerance/dependence problems. You may have something else going on.
Sent: Wednesday, August 18, 2010 4:11 PM
Subject: Augmentation from Mirapex?????
I have severe RLS and have been taking Mirapex for about 8 years now. Presently, I'm taking .25 mg at 5:30 P.M., .5 mg at 8:00 P.M. and .25 mg at 9:30 P.M. Most nights as of the last month or two I've had to take 1-2 Tylenol #3/Codeine tablets to get some relief from the RLS so I can at least get some sleep. I do wake up in the middle of the night usually with the RLS bothering me.
Occasionally, the RLS will go away so I can get another
hour or 2 of sleep, however, when I wake up about 6:30 A.M., the RLS is
bothering me again. In fact, as of recent, I've also had RLS flare-ups during
the day particularly in the afternoon. I've noticed that the RLS is coming on
earlier in the afternoon. It's my understanding that I could be having
augmentation from the Mirapex being that the RLS is starting to bother me
earlier in the afternoon.
Carol Ann S.
Augmentation is a worsening of RLS that occurs within
weeks or months of starting or increasing the dose of a dopamine drug like
Mirapex. The symptoms typically occur at least 2 hours earlier in the day,
become more intense, and may spread to other body parts like the arms. Taking
more of the dopamine drug helps for a while then the symptoms worsen again
requiring more drug.
When augmentation gets severe (as it sounds as if it may be getting in your case), it is treated by stopping the offending drug. The RLS will get markedly worse for a week or so (which is generally treated by potent opioids) then should return to the same levels as were experienced before taking the dopamine drug.
A Reply from Carol
Sent: Tuesday, August 31, 2010 5:01 AM
Subject: My RLS??
I have severe RLS and the symptoms are in my lower abdomen-pelvic area. Can RLS manifest itself in that area of the body?
I've had a ovary removed some years ago and I believe I have adhesions from the surgery. Could the adhesions mimic RLS? Of course, if I get up an walk around, then the RLS symptoms go away so I really believe it's RLS.
Carol Ann S.
If your abdominal region symptoms are due to RLS, they should respond to Mirapex, get worse off Mirapex and come and go with any other RLS symptoms that you have in your legs (or elsewhere).
Sent: Thursday, August 19, 2010 7:27 AM
Subject: anticoagulants and RLS
Was just diagnosed with having an "ischemic event" in my eye. So, it was a stroke that just happened to affect my eye. I will be seeing the doctor today to get testing set up but am anticipating that they will put me on anticoagulants. I have not really had tine to do much usual reading and research, but do they bother RLS at all?
There is no issue with anticoagulants and RLS. All the drugs that “thin” blood are RLS friendly.
Sent: Friday, August 20, 2010 5:40 AM
Subject: RLS and neuropathy
I am suffering from RLS for the past 2 years. Six months back I developed a burning sensation in my hands and feet. I recently consulted my GP about the burning sensation problem. He said that the burning sensation is due to carpel tunnel syndrome. I believe RLS is sometimes closely associated with peripheral neuropathy. I am at a loss to understand whether the burning sensation which I am experiencing is due to peripheral neuropathy or carpet tunnel syndrome. Is RLS closely associated with carpet tunnel syndrome?
I would like also like to know if milk and dairy products aggravate RLS.
Peripheral neuropathy is associated with RLS although we
are not sure why. Carpal tunnel syndrome is one type of peripheral neuropathy
but is not one of the peripheral neuropathies that is typically associated with
RLS. Therefore, if you do have carpal tunnel syndrome, it is not related to your
RLS (it is usually caused by local compression of the medial nerve as it passes
through a narrowed carpal tunnel).
Some foods do seem to aggravate a minority of RLS patients but few seem to worsen with dairy products.
Sent: Sunday, August 22, 2010 12:07 AM
Subject: Cymbalta and RLS
I am twenty five and first began having restless legs at 17. My mother has it and so did my grandfather and his mother. I also have severe anxiety to the point where I cannot function without the cymbalta my doctor prescribed due to overwhelming nausea and panic attacks and resultant weight loss from not being able to eat anything. The RLS was not very bad before I started taking cymbalta almost two years ago. But in the last four months it has become unbearable. The sensations are strongest in my feet and calves, they feel hot and swollen and like the nerves need to be cut out, I frequently feel a desire to claw my flesh to bits to make it stop.
I borrowed some Mirapex from my mother and began taking it on an as needed basis, only when the RLS got so bad I couldn't make it go away with stretching. At that time it was only happening a few nights a week. As time went on, about a month and a half ago I began having symptoms every night. I went to the doctor and got my own Mirapex prescription and have been taking it every night a few hours before bed and then taking the cymbalta right before bed. This worked exceptionally well until about five weeks later when I began to feel my anxiety start to come back.
I put up with the anxiety and nausea and associated stomach cramps and everything else for about six days before I couldn't stand it anymore and took myself off the Mirapex again entirely. The very next day the anxiety symptoms were gone but the RLS has come back with a vengeance, I'm now experiencing it not only in my lower legs but in my hands and forearms as well.
Tonight I took a Mirapex tablet out of desperation and it is helping but I fear the effects it will have on my anxiety. I know that cymbalta and other SSRI's are known to exacerbate RLS but I am somewhat unwilling to discontinue using it when it is so effective at relieving my anxiety and produces no negative side effects apart from the enhanced RLS.
Can you recommend some better drug cocktail that could
keep me free from anxiety and RLS or perhaps a different way to take the
medicines I am already prescribed?
You are correct in that the Cymbalta has markedly
worsened your RLS while helping your anxiety problems. It is possible that
Wellbutrin (one of the very few RLS friendly antidepressant drugs) may help your
anxiety problems but it typically does not works as well for this problem as do
the SSRI's and SNRI's (Cymbalta is an SNRI).
Mirapex is a reasonable solution to your worsened RLS symptoms if you can't get off the Cymbalta. However, it sounds like you have developed augmentation from that drug so it is not one that you should be taking (it is also very likely that the other dopamine agonist, Requip will cause the same problem).
You should speak to your doctor about trying other classes of RLS drugs such as the anticonvulsants (Lyrica, Neurontin) or painkillers (tramadol, opioids).
Sent: Saturday, August 28, 2010 9:52 PM
Subject: Augmentation with Mirapex.
I hope I can think straight enough to explain what's happening to me. I take .25 mg. Mirapex twice a day. And have been taking it for 1 year. I also take .5mg of Klonopin at bedtime and when I need it I take a tramadol. My neurologist, reluctantly , I get the impression he doesn't believe in giving opioids. also gave me 15 Vicodin for my really bad times. I took one tonight. Any way I have been having symptoms of RLS early evening and as of late it has gotten worse.
Tonight is especially bad. Mirapex always seemed to have
helped so much before. I just can't think about going back to how it was before
I started the Mirapex. I am not sleeping well at all. Up and down many times a
night and usually get up for the day from 2 am to 5 am. What is really worrying
me is that twice lately I have almost fell asleep while driving. A couple days
ago I almost hit the median strip and I had been fighting sleep and felt that I
wasn't alert. Then today I went across the line, both times about scared me to
death. Now I'm getting afraid of driving.
My neurologist is young and doesn't know much about RLS. He didn't even know what augmentation was. I gave him the Mayo Clinic Algorithm and an article from RLS.org about augmentation. I ask him once if the Mirapex stopped working or made the RLS worse what action would he take? H e said he would give me Sinemet. Everything I have read about Sinemet was negative. Even though I have taken my meds tonight plus a Vicodin I am getting no relief.
You do have a few choices. You could increase the
Mirapex but that might increase the chances of augmentation if you do not
already have it (and it sounds as if you may have this problem). If you are just
getting tolerant to the Mirapex, that may help but it also has a possibility of
increasing your daytime sleepiness problem which could easily be due to Mirapex
(as that is one of its side effects).
Alternatives would be to go to a more potent opioid like methadone or oxycodone but your neurologist may be reluctant as he sound like he does not have a lot of experience with RLS. You are correct in that Sinemet should not be used on a daily basis for RLS as it will cause marked augmentation problems in the vast majority of patients.
Lyrica would be another reasonable choice for treating your RLS (in addition to your current medications) but it too may cause sedation/sleepiness problems so should be used with caution in your case. It is very likely that your Klonopin (even at .5 mg) is contributing to your daytime sleepiness as it has a half-life of over 40 hours (which mean that after 40 hours, only half of the drug has been removed from your body) and commonly causes daytime sleepiness. If you need a sleep medication, Ambien or Lunesta are much better choices.
It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor (although you can share either book with him).
Sent: Monday, August 30, 2010 4:44 PM
Subject: clonazepam and rebound RLS?
Can clonazepam cause rebound RLS? I have been taking anti-depressants (SSRIs) for 4 years, and not until this year have i experienced PLMS at night. Until recently I only experienced it when I was falling asleep on nights when I stayed up very late and was very tired.
My GP prescribed clonazepam, and I was taking it occasionally without incident for several months. While I was on vacation in June/July, I took it every night, then when I got home and tried to go off of it, but had trouble sleeping and with my depression, so my psychiatrist said I should go back on and try decreasing to 1/2 a pill (0.25 mg).
That's been okay, except for early morning wakening. I hate taking such a strong (and addictive) tranquilizer and so I'm trying to go off it. But in the last 3 nights my PLMs have been horrible, especially in the early mornings, and the early waking has continued. Is it possible that this is caused by withdrawal or rebound from such a small dose of the clonazepam? If so, do you have any ideas for what I should do so I can get back to sleeping normally? I really don't want to take another psychiatric drug -- Requip especially scares me -- if this is something that I can manage or that will go away on its own?
Klonopin (clonazepam) is not actually and RLS or PLMS
drug. All it does is help RLS patients get back to sleep and stops
arousals/awakenings from PLMS (it does not decrease PLMS). You are probably not
having any more leg kicks (PLMS) than before but rather are waking up from
without the aid of Klonopin. As you may have read from the many letters and
responses about Klonopin, it has a very long half-life (results in daytime
sleepiness) and is quite addictive which is why I never recommend or use it for
RLS/PLMS. You would likely do better with Ambien or Lunesta to help you get to
sleep now that you have become somewhat dependent upon Klonopin.
Requip or Mirapex actually decrease the PLMS and RLS symptoms so are much better choices to treat these problems.
Sent: Tuesday, August 31, 2010 6:27 AM
Subject: RLS Enzymes
I read the letter on your site from the dentist that gave his mother digestive enzymes to help RLS.
His hypothesis was that the digestive enzymes helped the body by allowing it to rebuild system enzymes that were missing due to the food we eat.
If system enzymes were what was missing, then why not just supplement with systemic enzymes as they are readily available, instead of digestive enzymes?
There is no proof that digestive enzymes has any benefit for RLS. However, any individual patient can clearly do well with any unproven therapy. However, it is hard to comment about replacing digestive enzymes or system enzymes when we have no idea which ones are deficient or how to best replace them. As his hypothesis is only a theory, it is hard to speculate on the best way to manage a theoretical treatment.
Sent: Wednesday, September 01, 2010 9:25 PM
Subject: RLS question
I have been taking Mirapex and Neurontin for several years. I noticed the last few months that I’m starting to have difficulty expressing myself and having word finding problems
when communicating with others during a conversation. Do you know if either of these medications have this type of side effect?
I’m a 34 year old female with a family history of RLS.
Although both Mirapex and Neurontin can cause sleepiness and thus cause some cognitive problems, these problems should occur at the start of therapy (or perhaps with increases in dosage). Thus it is much less likely that you can blame the medications for your problems and should look for other sources.
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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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page
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