Patient letters on RLS symptoms and remedies- Page 54

 

Kicking RLS/PLMD Patient

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.

 

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Sent: Friday, July 16, 2004 2:04 AM
Subject: Help, I am going crazy!

I am 50 years old and suffer from RLS I am so glad I finally found this site now I have something fun to do at night anyway I was wondering if anyone out there has had any problems with crawly feelings in the ear? its driving me nuts and I wondered if its got anything to do with my RLS I went to the doc yesterday and I am now on the Mirapex and Zanaflex it’s a muscle relaxer but I haven't seen any one else talk about the Zanaflex anyway any info would be great  

Thanks so much
Lynda

A Medical Reply

RLS can occur anywhere on your body, but the ears are somewhat unusual.  Zanaflex has no role in RLS (except for its side effect to cause sleepiness).  Mirapex is an excellent RLS and should be tried alone before adding another RLS drug.
Sent: Friday, July 16, 2004 5:20 PM
Subject: Exacerbations of RLS

I am a 46 year old male who was diagnosed with PLMD and RLS about a year ago.  I went on Mirapex 0.5 mg  which was quickly increased to 1 mg at bedtime.  I have been doing well until lately.  Within the last few weeks I have had more trouble falling asleep and more episodes of RLS while awake.  I have twp questions
 
1.  Has anyone noticed a increase in signs/symptoms related to the season?  It occurs to me that I began having problems about this time of year (June) last year, ultimately leading to my evaluation, diagnosis, and treatment with medication. 
 
2.  Has anyone noted an exacerbation with an increase in exercise.  I exercise nearly every day but my wife tells me I have more night-time PLMD signs when I have exercised more strenuously  than usual.
 
Thanks
Don

A Medical Reply
We have noted a mild and inconsistent link with worsening RLS and summer.  There has been no rigorous study on this topic so this information is just anecdotal.
 
Mild to moderate exercise (this definition can vary considerably depending on your level of fitness) often improves RLS while moderate to vigorous exercise usually causes worsening or RLS as you have already noted.

Sent: Monday, July 19, 2004 12:41 PM

Subject: Requip instead of Sifrol (Mirapex)

 

I am writing from Germany, now it happened what is described: I have swollen feet so that you cannot see the ankle anymore, after taking Sifrol (Mirapex)  for 2 years, a colleague of mine is suffering from insomnia due to Sifrol. My question is whether Requip is an alternative. Does  Requip also provoke swollen feet and insomnia  ? Would it be recommended to change ?

Michaela

A Medical Reply
Insomnia may occur with both Sifrol and Requip but it is always worth trying Requip as it may work as well as Sifrol but not cause the same side effects.  Only trial and error will let you know for sure.
 
Ankle swelling is a very uncommon problem with either Sifrol or Requip so I would look for another cause of this problem.  It would be very interesting to see if this problem got better with Requip.
Sent: Tuesday, July 20, 2004 10:18 PM
Subject: Provigil for RLS?
 
I am a 42 year old physician with difficulty sleeping since the age of 6, and onset of RLS at 25.  My RLS is much improved on Mirapex and Neurontin, but I continue to have numerous PLM's disrupting my sleep. This has been confirmed with a sleep study performed on Mirapex and Neurontin.  I also had long stretches of alpha waves during sleep.  I take Serax 2 nights a week, with good effect.  If I take it more frequently I rapidly develop tolerance.  I have found the same to be the case with Percocet, Elavil, Sonata, and Ambien.    I try to alternate these meds, but find that most days I am absolutely exhausted.  I am only able to practice two days a week; I take the Serax on the nights preceding my work days. 
 
Basically, I am completely exhausted at least 5 days a week.  It is a serious misery, with major adverse effects on my quality of life, particularly my career and home life.
 
I know that Provigil is not approved for this indication,  but do you feel it could have a role in treating a patient who is chronically sleep deprived as a result of RLS/PLMD?
 
Do you have any other suggestions?

Monique R.

A Medical Reply

Thank you very much for your time and expertise.
Provigil would be helpful for sleepiness from almost any cause.  It is however always better to treat the cause rather than trying to patch up the results of not fully treated PLMD. 
 
Alternatives would be to increase either or both Mirapex or Neurontin until the PLMD arousal problem is resolved. Both these drugs may work very well for PLMD arousals.

A  Reply from Monique R.
Sent: Tuesday, August 03, 2004 5:34 AM
Subject: Re: Provigil
I am taking  1.5mg  of  Mirapex 2 hours before bedtime. I weigh only 108 pounds, and so am a  little hesitant to increase this further.  Also, increases helps only for a few months and then tolerance seems to develop, requiring ever higher doses.
 
 I am taking  600mg of Neurontin 2 hours before bedtime.  I decreased this from 1200mg,  (600mg two hours before bedtime and 600mg at bedtime), because the higher dose did not seem to help more than the lower one and the higher dose seemed to make my libido disappear.
 
Do you believe in vacations from Mirapex, in order to regain effectiveness? (Such a vacation would be dreadful to endure.)  Do you think switching to other dopamine agonists, such as Requip, can be helpful, or is there cross tolerance?
 
Thank you so much,
Monique R.

A Medical Reply
The tolerance that develops with dopamine agonists is different than with other drugs such as benzodiazepines.  This tolerance can often be resolved by raising the dose of the medication.  In some, where this causes more tolerance problems, changing to another dopamine agonist such as Requip in your case, may be helpful as cross tolerance does not always occur.  Although no information (other than anecdotal) exist about drug holidays in patients who get tolerance, I have found that rotating the dopamine drugs can be helpful in selected patients.
 
Other considerations would be a change from Neurontin to another anti-convulsant medication such as Topamax, Keppra, etc.  We do not understand how any of these medications work but some may work better than others in different patients.
Sent: Wednesday, July 21, 2004 8:53 AM
Subject: RLS and drug holidays
 
I have severe RLS for about 10 years.   I'm taking Mirapex and oxycodone which works great but my doctor says I need a 3 month holiday from the oxycodone.  He has had me try everything from Klonopin which I couldn't wake up from to Neurontin which made me sick.  Every time he has me try a new drug it makes it harder to get my RLS back into control.  

How do you feel about drug holidays?

A Medical Reply 

A 3 month holiday from oxycodone (or any other potent RLS drug) would be very difficult if it is not replaced with another RLS drug.  Narcotics are addictive but if taken carefully, addictive can be avoided.
Ultram is a non-narcotic drug that can be alternated with narcotics (every 2-7 days) thus taking drug holidays from each drug on a regular basis.
Sent: Wednesday, July 21, 2004 6:56 PM
Subject: RLS and Pamelor

I have been reading your website and have found it very insightful. I have been having symptoms that appear to be RLS. I seen my family doctor about a month ago, was put on Pamelor. I have not had any relief to this point. I just found out that my father has had the same symptoms for about 20 years. His doctor has tried several medications in the past.

For the last 10 years or so he has been taking Klonopin 1mg and Ultram 50mg at bedtime, my father tells me this regime works well for him. I am seeing my doctor soon, should I bring this to her attention? If this regime works for my father is there a chance it will work for me as well.

 
Thanks,  
Bob from Ohio   

A Medical Reply
Pamelor will most often worsen RLS so that is not a correct treatment for RLS.  Ultram is helpful for RLS as is Klonopin but both these drugs are not first line treatments and Klonopin is a very addictive drug.
 
Mirapex or Requip are currently the treatments of choice and work very well for most RLS sufferers.
 
You can also have your doctor refer to the medical journal article "An Algorithm for the Management of Restless Legs Syndrome" (I am one of its authors) which was published in the Mayo Clinic Proceedings (all doctors get this for free) in the July 2004 volume as a guide on how to treat RLS.  This should get her attention and direct correct treatment for this very debilitating disorder.
 Sent: Thursday, July 22, 2004 8:21 PM
Subject: Peanut butter for RLS?

I found that when the creeping crawls start, I eat a spoonful of peanut butter.  I can't explain this, but in 15 minutes I am able to go to sleep and my legs and arms stop moving.  I have had RLS for about 15 years or more and have been on different types of medication through the years. 

This remedy for me started when my legs would start to move and I had to get up and walk.  I would then eat a half of peanut butter and syrup sandwich.  I tried this on a few occasions and noticed that they would stop moving after eating the sandwich.  Now it is the remedy for me.  I know this sounds weird to some but when you tried everything else including a soap bar on your leg, what harm is a spoonful of peanut butter. 

Just try and please let me know if it helps anyone else.  Someone else tried it and it helps him.

Tina H.

Sent: Friday, July 23, 2004 11:25 AM
Subject: Insomnia with Mirapex/Requip
 
At night I take Mirapex and Neurontin (Mirapex alone doesn't work). For quite a while, I've been having trouble with waking up.  I go to sleep ok but I wake up 2, 3, or 4 times a night.  I blamed this on the Mirapex so my doctor said I could change to Requip.  My sleeping is somewhat improved but I still wake up usually twice a night.  Have you ever heard of Requip causing insomnia or will I have to look elsewhere for the cause for my sleeping trouble. 

Thank you,
Mary P.

A Medical Reply
Both Mirapex and Requip may cause insomnia (or increased sleepiness in others).  This happens in a significant minority of patients.
Sent: Friday, July 23, 2004 1:37 PM
Subject: Mirapex and drowsiness

I have a question about Mirapex. I have read the warnings concerning falling asleep during the day without warning of excessive daytime sleepiness. I have also read that some patients also experience excessive daytime sleepiness on Mirapex. (I read these warning on your web sit and in the full prescribing information for Mirapex).

My question is if someone takes Mirapex only at night in an amount of 1-1.5mg, could the Mirapex cause them to experience excessive sleepiness during the day?

RR

A Medical Reply
Most who take Mirapex only at bedtime will not have any daytime sleepiness as this problem occurs mostly with daytime Mirapex doses.  A few patients who are very sensitive to the drug may have next day hangover effects and experience daytime somnolence problems.
Sent: Tuesday, July 27, 2004 8:57 PM
Subject: Jerking legs at night?

I have been reading about PLMD and RLS and I'm hoping you can help.  My husband is 27 and almost nightly for about 5-20 min. his legs jerk strongly while he is falling asleep.  It doesn't wake him up, but it keeps me up. Sometimes I wake him to tell him that he is jerking to try to get him to change positions or relax.  He starts to fall back asleep and it happens again.

He is a deep sleeper and this never wakes him up.  It doesn't seem to happen through the night, although usually by morning all the covers are kicked around.  He doesn't have a problem during the day. 

Could you recommend anything to help? 

A Medical Reply
It sounds as if his PLMD (leg kicks) do not bother him so he does not need any treatment.  To solve your problem, change to twin beds and move them apart by 3-4 inches then his leg kicks will not bother you.  As expensive as new beds may be, this is the cheapest safest long term solution for this problem.
Sent: Thursday, July 29, 2004 11:24 PM
Subject: RLS and muscle relaxant medication?
 
I have had RLS for a couple of years now, at first I was taking Tylenol 1 which helped for a while, then my doctor prescribed Sinemet, but I stopped taking it when I read that It can cause augmentation. I am now taking Robaxacet (muscle relaxant) but find I have to take about 6-7 pills a night.

I am going to see my doctor again, and I was wondering what drug would be good, I've heard of Requip and Permax, etc. I live in Canada, and the doctors here don't seem to know a lot about RLS. Also, I heard that a calcium-magnesium tablets would help, but wondered how many to take a day.

Thanks for any info,
Dianne B.

 

A Medical Reply
Both Mirapex and Requip are available in Canada and are the drugs of choice.  Permax has more side effects and is not used much any longer.
 
Robaxacet and other muscle relaxants have no role in RLS and only work if the cause you to fall asleep which is one of their unwanted side effects.  Calcium and magnesium have no benefit for RLS.
Sent: Friday, July 30, 2004 12:32 PM
Subject: RLS and children?

I have a seven year old son, who for about 4 years has complained about "leg pains" Being so young when it started, it was difficult for him to explain what he felt.  It mostly started when he sat still watching t.v, riding in a car, airplane, sitting at the dinner table or before bed.  He would cry and punch and kick his legs.  We were told that since x rays showed nothing wrong with his bones it must be growing pains. 

Now as time has passed the "pain" has gotten considerably worse.  It has been difficult to get information on RLS in children. His pediatrician has also found it difficult to find doctors who know a lot about it.  It does feel great knowing that there is a name for what he has, getting us that much closer to treating him. 

Where should I be looking for more info? Would meds be something that might help?

Thanks,
Yesenia S.

A Medical Reply
It is very difficult to diagnose RLS in young children as you have already mentioned due to the difficulty of obtaining an adequate description of the symptoms (it is tough enough to get these from an articulate adult).  When there is a family history of RLS, the diagnosis is easier to ascertain.
 
Much of the work on childhood RLS is being done by Dr. Arthur Walters at the New Jersey Neuroscience Institute.  You can get more information on this topic from the RLS Foundation . 
Sent: Saturday, July 31, 2004 9:07 PM
Subject: RLS and Blood Pressure Meds
 
I have several questions about RLS:
1. Do people ever report that RLS seems to be worse in one leg that the other?  My left leg tingles much more than the right one.
2.  My RLS seems to be very bad during the day too.  What dose do you recommend of Mirapex for daytime use?
3.  Is peripheral neuropathy similar to RLS?  After reading about it, I'm wondering if I might have that instead of RLS.
4.  I am taking Cardizem LA and am wondering if it could be making RLS worse.
5.  Is Doxepin likely to make RLS worse or better?

Thanks so much for your help.
Carol F. 

A Medical Reply
1.  RLS is very often worse in one leg or arm than the other.  This can also change during the day.
 
2.  For daytime RLS, daytime doses of Mirapex can be very helpful.  The drug should be taken 1-2 hours before the daytime symptoms occur.  With higher doses (over 1.5 mg per day) there may be some concerns of daytime sleepiness in some patients.
 
3.  Peripheral neuropathy (literally means inflammation of the nerves that supply the legs and arms) is different than RLS and usually results in pain, numbness or tingling of limbs but does not usually have a relationship to time of day and is not associated with an urge to move the limb for relief.  About 20% of RLS sufferers may have a superimposed peripheral neuropathy which makes the diagnosis even more confusing.
 
4.  Cardizem should not worsen RLS, but anything is possible.
 
5.  Doxepin as with most anti-depressant medication tends to make RLS worse.  This drug does cause sleepiness so if it puts you to sleep before RLS symptoms worsen then it can be an effective sleeping pill (but may have hangover effects during the following day).
Sent: Tuesday, August 03, 2004 8:20 PM
Subject: My RLS
 
I began having RLS symptoms during my first pregnancy, 14 years ago.  I have had 3 more pregnancies since then and have experienced RLS with each one.  
 
I started being treated for depression about 2 years ago.  I was put on antidepressants, and my RLS symptoms returned.  When I was taking Paxil, the RLS became very severe.  After looking it up on the internet, I discovered that for some people, antidepressants make RLS worse.  My doctor tried several different antidepressants and the ones that helped my depression, made the RLS worse to the point that I had to stop the medication.  My doctor did not want to put me on any of the Parkinson's medication unless it just became unbearable, due to the side effects. 
 
I have recently began the antidepressant Lexapro, and my doctor also gave me a script for Sinemet in case the RLS returns.  I'm also taking Ambien due to severe insomnia.  I have not started the Sinemet yet, as I am waiting to see if my symptoms return after I have enough of the antidepressant in my system. 
 
After reading some of the information on this site, I discovered that the Sinemet may actually make my RLS worse!  I don't think I can handle much more of this!  I need to feel normal again......not depressed, sleeping normally, and not having the urge to move my legs all night long!  Is Sinemet the right drug for what I'm experiencing?
 
Why does the antidepressants worsen RLS?  And why did I only have RLS during pregnancy before that?
 
Thank you in advance for answering my questions.
 
Sincerely,
Dana

A Medical Reply
It is not known why pregnancy worsens RLS but this is a very common problem.  It is suggested that shunting of iron (which is used to make dopamine) to the fetus may contribute to this worsening.
 
Most antidepressant medications work against dopamine which is why they worsen RLS.   Wellbutrin and Remeron are the 2 antidepressant medications that do not worsen RLS.
 
Mirapex or Requip are quite safe medications that are much better for RLS than Sinemet.  Most doctors do not prescribe these drugs as they are not very familiar with them.
 
You can also have your doctor refer to the medical journal article "An Algorithm for the Management of Restless Legs Syndrome" (I am one of its authors) which was published in the Mayo Clinic Proceedings (all doctors get this for free) in the July 2004 volume as a guide on how to treat RLS.
Sent: Monday, August 02, 2004 3:01 PM
Subject: RLS worse with Wellbutrin

I have RLS with some stiffness in my legs associate with this condition. I was prescribed Paxil, Celexa, Effexor for severe depressions but all of them increased RLS and stiffness, rigidity. Finally my doctor put me on Wellbutrin because it acts positively on dopamine and it is suppose to help with RLS. It helped a lot for depression especially fatigue and concentration but I noticed an increase in RLS.

Why Wellbutrin increased it when it suppose to decrease RLS because of his action on dopamine ? I don't want to try Mirapex , I'm still young and I'm worried about side effects like anxiety and long term effects. Is there any other stimulant or anti depressant that does not increase RLS and stiffness.

Thanks,
Christian L.

A Medical Reply
It is indeed very puzzling why Wellbutrin worsened your RLS.  It usually does not help RLS but just does not worsen it.  As with most drugs there can be quite varied responses to therapy in given individuals.
 
Remeron is another antidepressant to try as it should not worsen RLS.  The concerns about long term effects of Mirapex are very minimal especially compared with the very effective treatment results with this drug.  Mirapex does not cause anxiety.
Sent: Wednesday, August 04, 2004 8:19 PM
Subject: Hormones and RLS?
 
I had written a month ago, (in a lot of distress because of 24/7 uncontrollable RLS).  It appeared out of nowhere after having it under control for the past 6 years with Mirapex.  The apparent reason for my sudden worsening symptoms turned out to be hormones. I had switched to a different type of birth control pill (from Ortho Tricylen to Ortho Tri-cylen Low). 

It took experimenting by going completely off the pill for only 1 day to stop the RLS.  The Mirapex started working again and I've been getting along fine now for the past month. (I'm back on the old birth control).  Are the pharmaceutical companies working on this link between RLS and hormones?

My very first episode of RLS was when I was pregnant with my first child. I just wondered if anyone else had ever had a similar experience.

Brenda ,
South Dakota

A Medical Reply
RLS with pregnancy is extremely common and usually will indicate a very high potential for RLS later on.  Many (less than 50%) of women will notice a change in RLS (sometimes better or worse) with hormonal changes.  This includes just before menses, changes in hormonal pills and with menopause.
 
As this hormonal effect is so varied (does not occur at all or makes some women better or worse) it is very difficult to figure out what is going on.  There is so much work to do on RLS that I doubt that anyone (or any company) has done any formal investigation of this hormonal effect.  RLS does occur twice as often in women compared to men, however.
Sent: Thursday, August 05, 2004 7:59 PM
Subject: SSRI-induced Restless Legs Syndrome
 
I've been reading about the  wide variety of medications, supplements, etc. that we RLS patients have used to find relief.  I've been taking Prozac for 12 years, and read that Prozac and other SSRI's either cause or exacerbate RLS.
 
Ha anyone out there found RLS relief, or reduction by quitting Prozac or any other SSRI?  If so, did you have any problems, adverse side effects as a result of quitting Prozac or other SSRI's?
 
Russ H.
Denver CO

A Medical Reply
It is a very mixed bag with Prozac and other SSRI's.   The answer you are looking for is as follows:  Some will get relief with stopping their SSRI while others find no difference.  A small percentage actually get better with SSRI's and worsen when stopping them.  The reaction can be very individual.
Sent: Saturday, August 07, 2004 3:33 PM
Subject: RLS and psychiatric medications

I wrote you once before and you were very helpful.  My RLS seems to have stabilized with my Neurontin, which I am so thankful for. In fact, I take quite a bit less now than I had to before.  I also take Xanax at night as I have plain old insomnia, also depression and anxiety. 

The doctor wants me to take Abilify for my depression.  I am worried about that permanent disorder that makes your face jerk from taking anti-psychotic drugs.  Also, could that make my legs worse again?  I know most of those kinds of drugs make that worse, but he says no on this.  I am just really afraid of it, but he thinks it will settle me down and make me happier.  What do you think?

Also, I have heard a new antidepressant is coming out called Cymbalta.  Would this also make my legs jerk like all the others?

Again, thanks so much,
Irene O.

A Medical Reply
It appears that the drug Abilify has positive action on the dopamine receptors which indicates that it may actually be helpful rather than harmful for RLS.  I have no experience with this drug nor have I heard of any reports of patients with RLS using this drug.
 
The problem with facial movements (called tardive dyskinesia) that can occur with anti-psychotic drugs is that they occur unpredictably with virtually all the drugs in this class.
 
I do not know much about Cymbalta but I assume from its profile that it will bother RLS.

A Reply from Irene O.

Sent: Sunday, August 22, 2004 1:07 AM
Subject: RLS and psychiatric medications

Here I am again!  I have RLS and am very depressed, apart from that.  About a year ago, I was put on Lamictal for depression and insomnia.  I took it for a few months, and it did seem to help me but it made my RLS worse.  I don't understand that, as I know it is a seizure medication, right?  So after a few months, I stopped taking it.  Sometimes I wish I could take it again, but then I would have to take opiates besides the Neurontin that I take, as that is what I had to do before. 

I can't take Mirapex or Requip.  Have tried them both, and they really made me hyper and totally unable to sleep.

My question is, do you know why the Lamictal made my legs worse?

Irene O.

A Medical Reply

Lamictal (lamotrigine) is different and not related to any other anti-epileptic drugs (such as Neurontin).  It is similar to other anti-epileptic drugs in that it does not really affect the dopamine receptors so there is no explanation as to why it should worsen your RLS rather than help (which would have been my guess).
 
Abilify would likely help your depression and RLS but you must personally weigh the risks versus the benefits of taking this drug.
Sent: Monday, August 09, 2004 10:26 AM
Subject: RLS = "R"ight "L"ethal "S"edation

I've suffered from RLS for at least the last 4 years. Initially it felt like someone was sticking needles (pins are too small) into the heal or ball of my foot or between my toes or even under the nail of one toe or another.  A few nights I tore the sheets off the bed convinced there was a pin or needle stuck in the sheets - none were found.  For a number of years before that I noticed that, if I avoided carbonated drinks, an airplane trip was made more easily but standing and walking around the plane seemed to help somewhat.  Thank goodness my traveling is very limited these days.

I have been on Neurontin (300mg) for the last 4 years and am finding the needles are coming back.  I therefore increased the dosage to 600mg and my doctor even told me that 1800mg was the maximum dosage I could take.  One night I tried 900mg and was groggy for most of the next morning.  I slept through any of the RLS activity but my wife said I was still "bicycle riding" all night.

I have an identical twin brother and he too suffers from RLS as does one of my first cousins.  My twin brother is taking 1mg of Clonazepam and 1mg of Permax, both at bedtime and his wife says his leg movement has stopped but my twin brother does say he is groggy until he gets into the shower.  My cousin swears by his medication: .75mg of Mirapex per day, 1/2 the dose at dinner time and the other half at bedtime, with no morning grogginess.  I have only one kidney and am concerned that some of these other medications might not be right for me.

I have a doctor's appointment in the next few days and want to provide some advice to my doctor since a change, any change to create some form of relief, is required.  I'm tired of literally "kicking" my wife out of bed each night.  Any advice you can advise would be truly appreciated. 

Sincerely,
Roger E. P.

A Medical Reply
It sounds as if you might do a lot better with Mirapex or Requip rather than Neurontin.  Either of those drugs would be fine even with one kidney, but if you are concerned about possible kidney problems, Requip is metabolized by the liver rather than the kidneys like Mirapex.
 
Neurontin causes sleepiness as an unwanted side effect in a very high percentage of users.  You might be able to keep your Neurontin at a low dose and then need less Mirapex or Requip.
 
Klonopin (clonazepam) has a very high incidence of daytime sleepiness and is also an addictive drug.
Sent: Wednesday, August 11, 2004 6:49 PM
Subject: RLS better with orgasm?
 
I have found that orgasm relieves RLS.

A Medical Reply
That is actually very common and works more often for women compared to men.
Sent: Wednesday, August 11, 2004 7:08 AM
Subject: Allergies and RLS

I want to tell you of my experience of RLS and the solution that has worked for me, but I haven't read here of anyone else having this experience.  I have suffered with RLS most of my life (I am a 45 year old female), getting quite severe in the last 3 years with the addition of peripheral neuropathy in my left leg.  For the last 2 years I had been taking Mirapex and Ultram with very good results and was happily resigned to this solution. 

Four months ago, I was diagnosed with both gluten and dairy allergies.  I stopped eating all forms of gluten and dairy then and also stopped all medications I had been taking for RLS.  Within the first week, all RLS symptoms stopped.  I mean, stopped dead.  Having done extensive research on the symptoms of a gluten allergy, it was noted occasionally that it could be the cause of RLS in some people. 

I also think that dairy had been causing me problems all along the way as well, as I knew certain dairy products increased the RLS symptoms as has been frequently noted on this forum.  I have occasionally eaten some dairy in the last 4 months (very little), but have been very strict in eating absolutely no form of grains.  Still no RLS even with a bit of dairy here and there.  This leads me to believe that the gluten issue may have been the greater "culprit" in my experience. 

I have also been relieved of a myriad of conditions that had apparently been caused by the gluten allergy, feeling generally so much better than I have in years.  Since cutting out all grains from my diet, this essentially equates to a low carbohydrate diet, which may also somehow figure into this whole formula.  Although the neuropathy has also been reduced to a large extent, it is still with me to some degree most days.  I don't mind this, as it is much milder now, can be relieved with a low dose of Ultram if needed, and is very secondary to the torture of RLS.

I would like to know if you know of anyone else having this experience with allergies and RLS.  Hopefully my experience will shine a ray of light on the whole mystery of RLS and perhaps someone else my find a correlation between allergies and their RLS condition. 

Thanks,
Kelly C.

A Medical Reply
It is known that many RLS sufferers seem to have trouble with carbohydrates in general (which obviously includes gluten) and dairy products (especially ice cream for some reason) seems to worsen RLS.  This is all still quite difficult to figure out most RLS patients do not share these problems.
Sent: Sunday, August 15, 2004 12:34 PM
Subject: RLS & Abilify

My doctor wants me to try Abilify.  I am terrified of tardive dyskinesia (abnormal movements occurring especially in the jaw muscles which are caused by long term usage of some psychotropic drugs).  Do these newer drugs like Abilify cause it?  Also, is it irreversible?  If you get the symptoms and stop the medicine, will it go away?  Or can it just start and never stop in some instances?  The Internet says older women are more prone to this, and I am 62.

Also, I have been taking Neurontin for my RLS for 5 or 6 years now, and have had terrible indigestion for 2 months now.  The doctor did an endoscopy and found nothing.  One Internet site said Neurontin could cause dyspepsia.  I have symptoms of that (burning stomach, burping, bloating).  And I already was taking Prevacid for heartburn.  My stomach problems are worse late at night after I take the big dose of Neurontin, so I wonder.  Have you ever heard of it causing those problems?  I am just terrified of not taking Neurontin though, as I tried stopping it twice, and was up all night and felt so bad the next day.

Do you think I should try Tegretol?  I can't seem to find a doctor here that knows what to suggest.

Thank you,
Irene O.

A Medical Reply
Abilify is a dopamine agonist (works at the same D2, D3 and D4 receptors as Mirapex and Requip) which should help RLS and we do have some reports that patients with RLS have been helped by this drug.  It is likely that there will be some variability in responses, however. 

It is difficult to figure out who will get tardive dyskinesia with psychotropic drugs (and as Abilify is very new, less data is available for this drug) but it does occur more common in older women and with increased duration of use.  Once the tardive dyskinesia occurs, it may or may not go away once the drug causing it is stopped.

 
Neurontin is a good RLS drug and does not cause heartburn very often.  The only way to tell is to go off it for a while (which seems to be a problem for you) and then see if the heartburn goes away.  You may want to switch to Mirapex or Requip (I like them better anyway) for your RLS and see if Neurontin was causing problems.
 
Tegretol has not been shown to work as well as Neurontin or other anti-epilepsy drugs.
Sent: Wednesday, August 18, 2004 2:43 AM
Subject: Neurontin for RLS?

In your response to Irene on Aug. 15th, you said you preferred Mirapex or Requip instead of Neurontin. Would you please explain. I have been on Neurontin for approximately 3 years. Sometimes I feel it works well, but then other times it doesn't. 

I have RLS every night. I also feel it strongly in my arms & chest and other parts of my body. Sometimes it is absolutely overwhelming. I am 66 and have had RLS for at least 25 years. I took Mirapex for a few years and it was great but I started getting a very upset stomach to the point of throwing up.

The doctor switched me to Neurontin. I haven't been back to see him because he is very hard to get an appointment with. Do you think I could switch back to Mirapex again or do you think I would still have the same problem with my stomach? I also take 1 Vicodin and sometimes during the night I have to take another one because my RLS will wake me up. The Vicodin works great but I have a hard time getting more than 30 tablets a month.

Thanks,
Lynn D

A Medical Reply

I prefer Mirapex and Requip to Neurontin because more RLS sufferers do better with the dopamine agonists and for most, once the Neurontin dose becomes effective, side effects (daytime sleepiness, hangover feelings) very often limit its use.  That does not mean that Mirapex and Requip are the best drugs for all RLS patients.  There are many who will do better with Neurontin than with the dopamine agonists.  These drugs must be chosen on an individual basis as there is a large variation in responses to all RLS drugs.
 
It may be worth a repeat trial of Mirapex or even Requip (which works the same as Mirapex but usually has a different side effect profile).  Neurontin can also be combined with Mirapex or Requip thus keeping the dose of each drug at a lower level which may limit side effects.
 
Vicodin is very effective for RLS but addiction and tolerance is always a concern.  This drug can be alternated with Ultram (tramadol, a non-narcotic pain killer) which should reduce those concerns.  It is also likely that with the proper combination of Neurontin and a dopamine agonist, the pain killers may be needed only occasionally or even rarely.
Sent: Wednesday, August 18, 2004 12:08 PM
Subject: Quinine or amitriptyline for RLS?

My PCP is treating me for RLS.  I had done some reading on the internet and have had discussions with my 27 year old son who takes Mirapex with great success for RLS.  My doctor suggested I start with Quinine Sulfate 325 mg.  Last night was the second night to try it and I just about had a meltdown, the pain and thrashing about was so intense and the inability to get to sleep had me in tears.  I finally took Ambien at 2:45AM and got a little sleep. 

In reading the literature, nowhere do I find quinine suggested for relief for RLS.  I have heard of its use for leg cramps, but not RLS.  So, anyway, the quinine approach was a bust for me. 

The doctor suggests that next step is to try amitriptyline in the hope that I will get leg relief and much needed sleep. If that doesn’t work, he has prescribed Mirapex. 

Here are my questions: 

  1. Has there been evidence to suggest that quinine might be used to help relieve RLS symptoms?
  1. Do you think Amitriptyline is a good next step before pursuing the Mirapex?  What would be the advantages/disadvantages?

Thank you for your help,
Susie H.

A Medical Reply
What you need to do is educate your doctor on how to treat RLS.  You can do this by having your doctor read the medical journal article "An Algorithm for the Management of Restless Legs Syndrome" (I am one of its authors) which was published in the Mayo Clinic Proceedings (all doctors get this for free) in the July 2004 volume as a guide on how to treat RLS. You can get a copy of this article at
Mayo Clinic website .

If you check our web site you will see that there is absolutely no role for quinine in RLS (you are right that it is only for leg cramps) and amitriptyline (Elavil) is an antidepressant that usually makes RLS worse.

Sent: Thursday, August 19, 2004 6:43 AM
Subject: Help for severe RLS?

I apologize in advance for the length of this post, but I am about at my wits end.  I am a 37 year old female and I have had RLS for as long as I can remember.  My mother also had RLS but we didn't know what it was back then. We just called it our nervous or jittery legs.  There were many nights that she and I would sit on the edge of the bed, hitting our legs against the floor and crying. My two teenage daughters have RLS as well as my sister. However, theirs is not as bad as mine. 

My RLS started out in my legs when I was very young.  I was officially diagnosed with RLS and PLMD when I was 20 but was offered no help.  My husband is in the military, and the military doctors didn't seem to know what to do.  As I got into my twenties, it became more prevalent and was bothering me more.  I would have 2-3 nights a week that I had trouble.  My husband would have to massage my legs very hard to try to help relieve the pain.  I could eventually get to sleep but would wake up all night long.  I ate Tylenol and Motrin like it was candy, all to no avail.  I even tried physical therapy, which didn't help either.

In late 1998, I was rear-ended by a car going over 50 mph while I was stopped at a stoplight.  I ended up with major neck and spine damage.  I had neck and spine surgery where they took bone from my hip and fused it in place from C-3 through C-6.  Then they put a titanium plate over that area with screws to hold it into place.  

About 8 or 9 months after surgery, my RLS got EXTREMELY worse.  It moved to my arms and now is in every part of my body.  Not only do I have the jittery feeling all over, but I have extreme pain 24 hours a day.  I suppose my PLMD is worse too because my husband says I kick him all night.  I can't sleep more than 2 hours at a time.

Ever since my surgery, I have tried many different medications.  My family practice doctor kept trying different ones, including Tylenol, Motrin, Klonopin, and Elavil as well as several others.  The Tylenol and Motrin had no effect and the Klonopin and Elavil just made me sleepy all the time. They were doing nothing to help the RLS.  I was at the point that I was in so much pain that he prescribed a low dose of Percocet to be used at bedtime.  Finally, I could find some relief!  However, I didn't want to have to take a pain pill every day and he didn't know what else to do, so he referred me to a neurologist. 

The neurologist has also tried many different medications.  I have been through the usual Sinemet, Mirapex and Requip routine but I am unable to take them because they make me violently ill.  I throw up within 15-20 minutes, even at a low dosage, which didn't even help the RLS anyway.  I also have IBS, so this may be why some medications make me sick, I don't know. 

My neurologist says that I have the worst case of RLS he has ever seen.  All the normal RLS medications have failed.  He also thinks that the RLS has caused ADHD.  He prescribed Strattera, which made me very sick.  He then tried Adderall XR to see if that helped.  It did for about 2 days, then I was back to where I started.  Adderall XR also gave me serious migraine headaches.  My neurologist also stated that someone who is in chronic pain for so long has a tendency to get depressed.  So, he prescribed Lexapro. 

Through all of this the only thing that seems to work is a narcotic.   I hate taking a narcotic, but I don't know what else to do.  It is the only thing that gives me any relief and allows me to live a somewhat normal life. I work outside the home full time but the jittery feeling and pain is always there, just lurking until the medication wears off.  When I get home and try to relax in the evening, my RLS goes berserk.   I would love to be able to just sit on the couch and read the newspaper, but that is impossible.

Since June my neurologist has me taking one Lexapro 20 mg in the morning and one Percocet 5mg, three times a day.  What else can I do?  I thought about massages, but I am not sure if they will help for more than just a couple of hours afterward.  I am afraid I have tried everything and I am running out of options.  I am too young to be in this much pain for the rest of my life.

Any suggestions?
SMC

A Medical Reply
Requip or Mirapex are generally the drugs of choice but of course they cannot be considered for you.  For most patients with severe RLS, pain killers will be necessary, especially if you can't take dopamine agonists.  You may be able to alternate Ultram (tramadol, which is a non-narcotic pain killer and often works as well as the narcotics for RLS) with Percocet and thus decrease the amount of narcotics that you are taking. 
 
I may also suggest that methadone may work better than Percocet (it generally is more effective and lasts longer) and also does contain acetaminophen (Tylenol) like Percocet.
 
Neurontin may also be added to your regimen to possibly reduce your need for pain killer medication.
 
Lexapro, as with most SSRI antidepressant medications usually worsen RLS.  Wellbutrin or Remeron are the recommended antidepressant medications that do not worsen RLS.
Sent: Friday, August 20, 2004 7:39 PM
Subject: RLS and Neurontin?

Is it possible that if I took Neurontin for less than a year (for pain) and then quit taking it , I could get RLS? The reason I am asking is I have a few
different things wrong with me but never had any trouble with my legs until I quit the Neurontin. For about a month I have been going nuts! The minute I
lie down my legs drive me crazy! I have to get up and walk and keep them moving!

When I told my doctor he laughed and said, sounds like RLS, if you find a cure let me know, we will make a fortune! I almost started crying! I dread nighttime and I can't stand to sit very long either. Someone told me Neurontin was used for RLS so I went back to taking it. Oddly enough if I take one in the afternoon and one at night it does seem to help. Now I am afraid to stop taking it!

Thank you,
Donna

A Medical Reply
It does sound as if you have RLS.  It is most likely that you RLS developed for some unknown reason while you were on Neurontin and the Neurontin masked the symptoms as it is a very good drug for RLS.  It is extremely unlikely that Neurontin had anything to do with causing your RLS.
 
Although your doctor is correct in that there is no cure for RLS, there are lots of good treatments that relieve the symptoms of RLS.  There is no reason for you to suffer from this disorder so ask your doctor to continue the Neurontin indefinitely for your RLS.
Sent: Sunday, August 22, 2004 2:33 AM
Subject: RLS for the Past 45 years

I’ve put up with RLS since childhood (now 55 year old male) although for the first 15 years or so this ‘discomfort’ didn’t even have a name.  My mother, who also experiences this awful ‘feeling’ in the legs at age 87, used to accuse me a ‘having ants in my pants,’ and I get a tremendous charge out of Kramer (“Seinfeld”) when he refers to it as “the Jimmy-Legs.” 

Presently, I’m taken Sinemet CR at bedtime (50/200) with a half-tablet of Sinemet (25-250) and this seems to provide a peaceful night’s sleep.  Until just recently, the problem only presented at night, or when very tired, but, more recently, has started to interrupt moments of relaxation during the day.  As I am certain is the case with all other patients, the symptoms disappear during periods of activity and/or ambulation. 

My symptoms are definitely exacerbated by chocolate.  I have found a direct relationship between the intake of any chocolate, or chocolate-containing product, and the amount of discomfort experienced.  As a matter of fact, if the intake of chocolate is great enough, I will experience ‘break-though” symptoms, even after being medicated as described above.  I seemingly have no sensitivity to caffeine.  Intake of caffeine-laced products (coffee, tea, sodas, etc.) at any time during the day (even just before retiring,) have little or no related effect. 

In the absence of Sinemet, tranquilizers and sedatives will initially provide sleep (nothing lower than REM sleep) but, during the night, the discomfort will actually break-through the sedative effect, and subsequent discomfort will necessitate ‘walking around,’ which provides instant relief from the discomfort, whereupon the sedatives and/or tranquilizers take over (again, relatively immediately) and I have actually walked into walls within my home (walking as a result of the ‘Jimmy-legs,’ then suddenly asleep as a result of the sedatives.)  This is to be considered a dangerous approach to treating RLS.  The added effects of Delta-Sleep (stages 3 and 4 sleep) Deprivation (generally associated with RLS) also negate the advisability of this type of regime. 

My personal research (very unscientific and quite anecdotal) has lead me to believe that a drop in levels of cerebral dopamine ultimately leads to the uncomfortable experience referred to as RLS.  Are there any natural sources that would inhibit the uptake and/or metabolism of dopamine in the brain, or is there any natural source that would stimulate the production of endogenous dopamine? 

My tolerance to Carbidopa/Levodopa increases at an alarming rate (if I attempt to keep myself symptom-free 24/7,) and, soon, the amounts of Carbidopa will no longer mask the nausea caused by the requisite amounts of Levodopa needed to suppress the symptoms.  Have tried a alternate course of Mirapex, in lieu of, and in conjunction with Sinemet, without positive results. 

Thanks for listening,
Charlie C.

A Medical Reply
Most all the sleeping pills (benzodiazepine class) will reduce stages 3 and 4 deep sleep and REM somewhat.  Ambien, however does not affect the stages of sleep and retains these stages in usual proportions.
 
It is almost certain that you are developing augmentation and rebound from Sinemet.  You should go off of the this drug.  It is very unusual for Mirapex or Requip not to work when Sinemet does help.  It may be that you need to be off of Sinemet for a while (a few weeks or so) before trying the dopamine agonists again and slowly raise them up until your RLS symptoms are controlled.
 
There are no natural sources of dopamine so you are stuck with the prescription drugs.  Other alternatives would be the anti-epileptic drugs like Neurontin.

A  Reply from Charlie C.
Sent: Sunday, August 22, 2004 10:01 AM
Subject: RE: RLS for the Past 45 years

It is also very possible that the short ‘trial’ of Mirapex (oh, so many years ago…) never reached therapeutic dosages.  I agree that Sinemet is becoming less and less affective, and that the combination of augmentation and rebound are adding to the problem.  I had considered a trial of Permax, but was concerned about the Cardiac and Pulmonary outcomes secondary to long term use when considering the “patient’s” age. 

I think I will return to the Mirapex, and see if I can titrate the dosage, within acceptable limits, to achieve a therapeutic effect.

Charlie C.

A Medical Reply

That sounds like a reasonable approach.
Sent: Monday, August 23, 2004 1:11 PM
Subject: My RLS and unconventional solutions
 
Thank you for your splendid website. May I describe my RLS experience? I am a 53 year old Caucasian male living in North Carolina. RLS symptoms started for me at about 30 years of age and have gotten progressively worse. My only solution was exercise and plenty of it, preferably running. Good for the heart, but very inconvenient for a desk job, because even running came to lose its effect often by early afternoon.

Last year someone recommended eating a banana, and I have found that eating normally two bananas at a time will absolutely wipe out the RLS symptoms for several hours (I weigh about 200 lbs.). So I thought, potassium!--but potassium supplements seem to make no difference. But bananas are a good short fix.

But the treatment par excellence for me has been chiropractic treatment, but of a certain kind. Two different chiropractors in the past helped me somewhat--it seemed basically that they achieved the same kind of effect as stretching exercises do for me: relief for a few minutes only. However, a chiropractor in nearby Charlotte, NC who practices the Gonstead method made a single adjustment, in my case to the 3rd lumbar, I believe, and the RLS symptoms, which I had been moderately experiencing driving to his office in my car, disappeared at once. Like any chiropractic adjustment, this one had to be repeated a number of times--and I had to learn not to throw it out by lifting or moving heavy weights (I do a lot work in my garden with landscaping--heavy stones, railroad ties, etc.).

You may know that the Gonstead method searches for "sublaxations," inflamed nuclei of vertebrae which perturb the vertebrae's normal positions, thus impinging on nerves. It became a habit for me to throw various vertebrae out (unintentionally, of course) and then to get right again in his office, generally with a disappearance of RLS symptoms.

Related to that, I have learned that my standing and sitting postures are extremely important. In fact, if I experience RLS symptoms in the legs while at my desk, it is generally when I am NOT sitting very straight and erect, with my spine pretty much curved backward as far as I can reasonably hold it while working. When I regain the right posture, the symptoms generally go away within one or two minutes. Similarly, I've learned that correct posture while driving is just as important: a small cushion or even two in the small of my back keeps my posture pretty much in line.

Jim P.

Sent: Wednesday, August 25, 2004 3:49 PM
Subject: Need Vicodin for my RLS?

I am a 63 year old male and I have had RLS for approximately 15-20 years. I never had to take medication until about 4 years ago. It seems like the older I get the more this bothers me. About 4 years ago I started taking half a pill of hydrocodone/apap 7.5/750 (Vicodin ES) tab before going to bed and I could sleep all night.

Now I am taking one pill of the hydrocodone 7.5/750 tab at approx. 9:30 pm and 3 Requip 0.25 mg at 11;00 pm. I go to bed at 11;30 pm and can only sleep approx. 3 hrs. then the RLS will wake me up. I get up and take another pill of hydrocodone 7.5/750 tab. I then do some moderate exercises, stay up for about 30 minutes to 1 hour and then I am able to go back to bed and sleep for about 5 more hours. I work from 1:00 pm to 9:30 pm and with this schedule I can sleep in the morning when it seems like the RLS settles down. On the weekends if I try to take a nap in the afternoon I can only sleep for about 15-30 min. and the RLS wakes me right up.

My doctor would like to take me off of the hydrocodone and use only the Requip. I tried this and it did not work at all. I was up 4-6 times during the night and I had to go back to both medications. I can barely cope with what I am doing now. My concern is about becoming more tolerant to the hydrocodone. My doctor does not want to increase the dosage. Please give me your advice on what to do. I appreciate your time .

Daryl P.
Tiffin, Ohio

A Medical Reply

You may still want to slowly increase your Requip and see if it helps reduce your need for Vicodin.  The dose you are taking is high enough to develop addiction/tolerance so being careful is quite appropriate.
 
Other alternatives include adding Neurontin one hour before bedtime and seeing if this helps your RLS.  You could also try Ultram and if this works near as well as Vicodin then you can alternate the 2 medications to reduce concerns with tolerance.
Sent: Thursday, August 26, 2004 7:10 AM
Subject: RLS and Word Recall problem (previous letter is Jan. 24, 2004, on page 51)  

I have developed a new problem, which my psychiatrist feels is related to the medication I take for RLS. I have experienced the problem while taking either Mirapex or Permax, however, I am also taking medication for serious depression and anxiety. I am taking Effexor, atenolol, Xanax and Permax. My doctor has ruled out any form of dementia.

The word recall problem comes and goes. often, it manifests as saying the wrong word (but in the same category) for example: "put it in the sink"- instead of "put it in the drawer". At times these mix-ups are automatic- I don't "search for words" - it just happens. At other times- my speech is terribly slow, I am self-conscious, and I know I am not performing normally. Could long term use of dopamine agonists be causing the problem?

I first noticed the problem when I switched from Permax to Mirapex and when I had been on Effexor for quite awhile. I went back to Permax, and the problem didn't go away. I reduced the Effexor by half, as well. I need medication for depression in order to prevent severe depressive episodes. This word problem is very concerning, as I am trying to rehabilitate and return to a teaching job.

Thank-you for any advice you can give me for this problem,
Margaret

A Medical Reply

Anything is possible but after using the dopamine agonists extensively, I have never heard of a similar problem occurring.  The only way to really tell would be to go off the drug for an extended period of time and see if you get better then worse with restarting the drug.
Sent: Friday, August 27, 2004 9:13 AM
Subject: RLS and Trazadone?

I have been diagnosed with RLS.  My doctor has prescribed trazadone and it worked for a couple of years, but now it seems to actually trigger the problem when I go to bed.  I have tried not using it for two days and although I seem better when first going to bed, I wake up in the middle of the night and cannot go back to sleep. 

Also for the two days that I have not used trazadone I find that I am more “antsy” and more easily agitated.  I am worried that I may be starting some type of addiction to this medication.  Do you have any suggestions? 

A Medical Reply
Trazadone is not an RLS medication.  It is an anti-depressant/anxiety medication (which is why you may feel antsy off of it) which has significant sedation as a side effect.  This sedative side effect may be working to put you to sleep and thus help your RLS problems.
 
Trazadone is not an addictive drug and tolerance does not generally occur.  It may be that your RLS is getting worse and you may do better with Mirapex or Requip.
Sent: Friday, August 27, 2004 5:21 PM
Subject: Mirapex and IV Chelation therapy

I have severe RLS controlled with Mirapex 1.25mg at HS for about 3 years with good results.  Recently I underwent IV chelation therapy for detoxification of toxic substances I had been exposed to.  A few days after this therapy it was as if no medication was in my system at all.

My RLS has been very bad and increasing the Mirapex dosage up has not helped. Movements at night are very increased. The fatigue is extreme. My ferritin level is at 40, better than usual for me.  Could the therapy have caused some kind of malabsorption of the Mirapex causing an increase in my RLS symptoms?  Any information you may have would be appreciated. 

Thank-you
Sleepy in AZ

A Medical Reply

There is very little credible medical evidence for chelation therapy (except in certain cases of poisoning with certain metals such as lead which is a rare event) for almost any disease.  Although it sounds very reasonable and the doctors who do this therapy provide medical papers that seem to support its effectiveness, no credible doctor would recommend or perform it.
 
The IV chelation therapy can certainly interfere would with levels of Mirapex and iron levels.  The problem with Mirapex absorption and levels should end once chelation therapy has finished but it is hard to say what it may have done to other elements in the blood which may have worsened your RLS.
 
In short, we know little about chelation therapy and what it would do to RLS but this modality of treatment should be avoided except for rare cases as discussed above.  The major benefit of this therapy is to the centers that make money doing it.
Sent: Saturday, August 28, 2004 6:20 PM
Subject: Questions about Mirapex.
 
I have been on Mirapex for about 2 years now and it seems like when I forget to take it that my RLS is worse than it was before I started on it.  Can that be true?
 
Also, I've noticed that my RLS is worse if I'm hot or have to pee or if someone else is touching me (like a kid on the lap, for example).
 
I should tell you that I also take Wellbutrin and Lexapro.  Would they increase the RLS? 

A Medical Reply

There are two possibilities to explain your problem.  It may be that with time your RLS has worsened which is not unusual.  Some patient do notice that when they discontinue dopamine drugs there is a (usually temporary) worsening of RLS.  Any stress such as being hot or needing to urinate can exacerbate RLS.
 
Wellbutrin does not usually worsen RLS but Lexapro certainly can do that and may also be the cause of your worsening RLS.
Sent: Tuesday, August 31, 2004 12:05 PM
Subject: Mirapex Insomnia
.
I was diagnosed with RLS over 15 years ago.  I took Sinemet - but augmentation forced me off Sinemet.  I was getting RLS in the afternoon, and the evening was a nightmare.  Previous to augmentation, Sinemet worked like a charm.  I would take 2, 100/25 tabs before bed, and just before sleeping would take 2, 100/25 CR's.  I got from 5 to 7 hours of good, non interrupted sleep, each and every night...until the afternoon RLS started, and augmentation was diagnosed. 
 
My neurologist (familiar with RLS) realized what was happening, and prescribed Mirapex at 2, 0.25 tablets at bedtime.  He said as an aside, many patients will switch back and forth between Mirapex and Sinemet, every month or two. 
 
It again worked like a charm, and the afternoon and evening RLS disappeared in 24 to 48 hours.  However, I found that although Mirapex stopped the RLS - I now suffer from sporadic and intermittent insomnia.  And as time goes by, the insomnia seems more prevalent.  So I told this to my neurologist, who prescribed taking Klonopin/ Rivotril (Clonazepam - take two tab with the Mirapex at bed.  Well...it eventually knocks me out - after 3 or 4 hours, but I seem to either stay wide awake, with a drunken-like, uncoordinated manner...or I doze off for 5 or 10, or 20 minutes, and wake, and remain awake (with the drunken, lack of coordination)  for 20 or 30 minutes - until the 3 or 4 hours pass.
 
I know that Mirapex is an agonist while Sinemet actually increases dopamine production.  Would this have anything to do with my insomnia from an agonist - while the other "knocks me out".  ??
 
My problem RLS and "periodic leg jerk" is a bedtime/sleep time issue for me.  Unless I get into augmentation problems, RLS really isn't an evening or afternoon problem. 
 
I originally was diagnosed with RLS after being treated for codeine addiction ( which I was "self prescribing" before I knew about RLS, and it worked!).  My biggest fear is some night, I'll "slip" and take codeine!!  I know it works, and my "little voice" knows it works too!
 
I also have ADHD.  I take Concerta 54mg once a day and 30mg Adderall XR once a day.  They work great.  I take them in the morning, so they  are not present come bedtime.  But I have on several occasions taken my 54mg Concerta at 4 or 5 am, on one of those nights where you decide "you might as well stay up"...and the Concerta of course "wakes me up" but lots of time, it will also "calm" me and if I'm just watching TV or lounging ( at 4am or 5am) fall asleep, for an hour or two!
 
So right now, I'm supposed to do the Mirapex/Clonazepam thing for a couple of months, then just take Sinemet for a month or two, then switch back?  But I don't know about Clonazepam.  My wife doesn't like it, she's fed up with cleaning up spilt beverages, cigarette ash, and fixing knocked over lamps, furniture etc. 
 
Its strange....I knew when Sinemet with "kicking in"....I'd yawn, lots of yawning, then feel sleepy, and fall asleep.  Now Mirapex:  same yawns, even feeling sleepy, but most time, after "hitting the hay", I'd be wide awake in 15 or 20 minutes, and stay wide awake. 
 
HELP,
Dave G.

A Medical Reply

My advice would be to stay completely away from Sinemet.  Every time you take it the augmentation and rebound will come back and may actually get worse each time.  It is likely that the Mirapex is causing insomnia.  This has nothing to do with its action as a dopamine action compared with Sinemet which works as a pre-drug for dopamine.  The insomnia is an unwanted side effect of the drug and in fact other patients may complain of increased sleepiness.
 
Clonazepam is a very long acting drug that often causes daytime sleepiness and can be very addictive.  It may be a better plan to try Requip instead which is similar but may have a slightly different side effect profile.  Also, adding Neurontin may also be helpful to treat your RLS and as it often causes sleepiness, it may help put you to sleep.
 
In addition, it may be that your ADD medication may be causing part of your insomnia problem.  If you need those medications for you ADD then you should certainly continue them and try to work around them.

A  Reply from Dave G.

Sent: Wednesday, September 22, 2004 4:43 PM
Subject: Re: Mirapex Insomnia

My doctor switched me to Requip.  But he didn't provide any specific dosage recommendations.  I have emailed him, but he's on vacation, and it may be a couple of weeks before I hear from him.
 
He prescribed .25mg, but three times a day.  I suspect he was prescribing the drug for Parkinson's disease.  I don't need it during the day its at night.  So would I take 2 or three of the .25 mg. 
 
I have been taking 2 at bedtime, but its only been for two nights now.  However, I am still not getting any worthwhile sleep. 
 
My GP is willing to add Neurontin, can you suggest a dosage and protocol?

If things don't improve soon, will I have to look at adding a narcotic?  If so, some suggestions, because...I have been treated twice in the past for codeine addiction, as it was codeine that I found by accident relieved the symptoms of RLS.  After detox I sought RLS treatments and you know the history of me and Sinemet.

Dave. G

A Medical Reply

 
What is generally done with Requip is to increase the dose every 3 days until symptoms are relieved.  The dose should be taken 1-2 hours before symptoms are occurring.  Neurontin should only be added if large doses or Requip (over 4-6 tablets per dose) are needed.
 
You should be able to take care of your RLS with Requip and possibly Neurontin.  If not, then narcotics or Ultram may be considered.
Sent: Tuesday, August 31, 2004 9:53 PM
Subject: Menopause and RLS?

I have been having RLS symptoms for two weeks.  My doctor recently prescribed .5 mil of clonazepam.  I am once again up in the middle of the night after sleeping for 4 sound nights.  Do you think my sleeplessness is due to RLS even though I am taking clonazepam?  Also, I have a constant twitchy feeling in my lower pelvis that seems to be similar to my RLS symptoms.  Is it possible to feel these symptoms in other parts of the body than your legs?  I am having menopausal symptoms, could all this be related?

Thanks,
Teresa

A Medical Reply

Hormones can worsen RLS or bring it on which may be what menopause is causing in you.  Requip or Mirapex are better RLS drugs that take care of the symptoms.  Clonazepam (Klonopin) does not really treat RLS but rather helps put you to sleep.  It is a very long acting drug which often causes next day sleepiness and can be addictive.
 
The symptoms in your pelvis may very well be RLS and should be relieved by Mirapex or Requip.
Sent: Friday, September 03, 2004 4:20 PM
Subject: Severe RLS symptoms associated with fibromyalgia?

I have suffered from RLS for the past several years and even though I am an RN I didn’t even know there was a name to the “creepy crawly” sensations I felt in my legs that would keep me awake for hours!  I stumbled onto a website to discover that I was not alone.     

For me, I would describe the sensations as “little bugs crawling inside my legs” or “someone tickling my bones.”  It would absolutely drive me nuts and I would thrash around in bed even on Ambien, get up, walk or run on the treadmill, go back to bed and thrash around some more, get up again, read, walk around the house, go back to bed, take more Ambien, but at times it was so bad that I would be awake all night long until my kids got up for school.  It is like torture when you can’t sleep, yet you are exhausted beyond reason.  In fact, I have heard that captors have tortured prisoners or weakened them during an interrogation process through the means of sleep deprivation, because they know how severely it compromises a person.  I think I prefer the pain of fibromyalgia to RLS because at least I can go to sleep with pain most of the time.  

The worst times for me with RLS were during a 1 month period in 2003 when I stopped my narcotic pain medication abruptly.  I had been on a strong narcotic patch called Fentanyl  that is absorbed into the bloodstream through the skin for several months for my fibromyalgia.  I did not know that RLS symptoms would increase in severity as a result of narcotic withdrawal.  I had frequent and severe symptoms of RLS, much more than I had had before (and even then I had already replaced my sheets twice in a 6-month period due to tearing holes in them with my feet because of all the thrashing around!)  Twice during this withdrawal period I was awake for almost 48 hours as a result of RLS symptoms and had to be finally taken to the ER and knocked out with morphine to sleep.  Sleep deprivation will make you crazy!

Thankfully, I had a polysomnography (sleep study) around this time, which showed the RLS and another sleep disorder commonly associated with fibromyalgia known as alpha-delta sleep anomaly, or alpha-intrusion, and the neurologist put me on some additional medications for this disorder as well as an anti-Parkinson's medication known as Mirapex, which is also used to treat symptoms of RLS in some people.  I was so exhausted from not getting much sleep due to the RLS, so I was relieved to finally try the Mirapex.  

It is funny now, but the first week of taking the medication, it often causes insomnia as you adjust to the medication, but I didn’t realize that until a few days later.  I just wondered why I was wide awake with no symptoms of RLS until 5 am every night.  After about a week, this resolved, and I finally got some sleep and got rid of the dark circles under my eyes.  Good thing, because after all this resolved (finally) I was due to go on a 2-week choir tour to England and Scotland that had been planned for 2 years, and I was supposed to be a vocal and flute soloist.  It had looked like I was going to have to back out of it at the last minute, but it all worked out in the end and we had a great tour.  I have been on the Mirapex now for a year, and it works very well for me.  When I don’t take it, my RLS symptoms do recur, even with Ambien and my other sleep medications.  I know this is quite a lengthy e-mail, but it was quite an ordeal for me last summer with this problem.  

Thank you,
Elisabeth Z.

A Medical Reply

It is more likely that the narcotic medication was treating your RLS (it works really well to alleviate both pain and RLS symptoms) and that by stopping the narcotic you were left with untreated RLS (which may make it seems like you are suffering from withdrawal when in fact you are just experiencing untreated RLS).
 
Mirapex or Requip are the drugs of choice for RLS so it is not surprising that you did well with them.  A sleep study is not needed for RLS although it does pick up the associated PLM's.  Although alpha-delta intrusion is reasonably common in fibromyalgia, it occurs in many normal people and other disease states making it very unhelpful for confirming fibromyalgia (or anything else for that matter).

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