Patient letters on RLS symptoms and remedies- Page 46

 

Kicking RLS/PLMD Patient

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

 

E-MAIL

Sent: Monday, February 17, 2003 11:20 AM
Subject: RLS Question

Although I have had RLS in some form most of my life (now I'm realizing), it has severely worsened within the last 2-3 years of my life (I'm now 43).  Two months ago, a neurologist gave me samples of Mirapex to try.  It has all but eliminated the late evening "crawlies" and resulting leg jerks and has dramatically improved my sleep quality (I only rarely experience RLS during the daytime). 

Now for the question.  I am taking .125mg twice a day, one at around noon, and the other with dinner at around 6-7pm (total daily dosage is .25mg).  Although the jerks are gone, I am lately getting aching in the affected left leg only.  Before taking Mirapex my legs never ached, they just jerked and "crawled".  But now, I have the pain. 

What could this indicate?  Am I taking too much, or too little Mirapex?  I lately tried to take the .25mg dose once a day in the evening, instead of spread out twice a day, and that's when the aching really began.  Now I'm going back the lower dosage twice a day.  Does time of day make a difference when taking this drug??  And what can I do about the aching?? 

Thanks,
Kelly, from Austin, TX.

Medical Reply

Generally the best way to take Mirapex about one hour before symptoms usually occur.  If your RLS does not start until the evening, then there is no reason to take the medication hours before it is needed.  The lowest dose that eliminates the RLS is the best dose.
 
Your feelings of pain in the affected limb does occur, but it is mostly gets better (or is not affected) with Mirapex.  Therefore it is difficult to explain why your leg pain seems to get worse with Mirapex.
Sent: Wednesday, February 19, 2003 8:42 AM
Subject: RLS medications

Great site,  I learned a lot of things from it.  I have been diagnosed with sleep apnea (use CPAP) and RLS.  I first was prescribed Requip by my sleep doctor, but it caused PROFOUND sleepiness.  I switched to Mirapex and all was okay for a few months, it helped my RLS and together with 5mg of Ambien, taken when needed, was enough to get me through the night.

However, recently, in the last month or so, I have not been able to sleep- the doctor increased my dosage of Mirapex to 2 -3 of the .25 mg tablets a day.  With increased dose, side effects have increased, such as constipation, muscle rigidity, feeling unfocused, and insomnia seems worse.  I am not in synch anymore.

My doctor wants to do another sleep study and I guess I will soon.  Also, I was taking all the Mirapex , either .50-.75 mg,  about 1-2 hours before bed.  I just started taking one pill around 5:00 pm and the rest as usual- do you think this will be beneficial?  Also, I am reluctant to take the Ambien on a regular basis, but my doctor says I should not be afraid to take it.  What is your opinion?

I am thinking of asking him to change medications. It seems some people have success alternating. Also, the opioids work well for me.  Should I ask him about Darvocet or Lorcet?  Would I take these in conjunction with the Mirapex?  What about Ultram?
 
I am really getting at my wits end due to lack of a good nights sleep. Even when I sleep, it seems very light sleep and not restful.

Any advice or overview would be appreciated.
Steve C.

Medical Reply

It sounds like you have more than maxed out on Mirapex.  My suggestion is to discuss with your doctor decreasing the Mirapex dose to the most tolerated dose and adding a pain pill.  Alternating hydrocodone (Vicodin, Lortab, etc.) with Ultram (3-4 days of each per week).
 
Ambien is very safe and can be taken every day without concerns about addiction/tolerance.
 
It is doubtful that a repeat sleep study will be helpful or reveal anything that you or your doctor do not already know.
Sent: Thursday, February 20, 2003 7:05 AM
Subject: 14 yr old with PLMD

We are the parents of a 14 year old boy with PLMD, with minimal RLS symptoms.  Max will be 15 in May. He has had this condition since he was an infant.  He had severe insomnia. He was able to sleep only a half hour or so at a time.  His limbs and sometimes even his torso jerk, sometimes hard and sometimes it is very subtle.  He has had neurological tests that ruled out seizures, etc.  He had a sleep study done 3 1/2 yrs ago by a sleep specialist. The diagnosis was PLMD, many arousals associated with movements, Alpha delta sleep, NO REM sleep attained, with 58% sleep efficiency, so you can imagine how tired he is after waking up every few minutes and then having trouble getting back to sleep each time, throughout the night.

Max has been taking a combination of drugs, as they are not effective alone: 1mg Klonopin and 600mg Neurontin.  (The Neurontin had to be slowly increased because it caused him to vomit.)  This has been a tremendous help to him. But they are variable and seem to have lost some effectiveness, and he still has trouble getting to sleep and still has some restless nights. 

Now that he is in High School and getting up at 6:30 AM instead of 8:00Am, it has had a bad effect on him.  He is very intelligent, an Honors student, a scuba diver, and a musician and active in the school marching band so he is physically active and socially well adjusted (absolutely not hyper).  He is a great kid.  He has Crohn's Disease, but it is well under control with only an antibiotic (not Flagyl) and no steroids for 5 yrs now. We also gave him an iron supplement which has raised his ferritin level from 25 to 42 over the last year and iron is normal.

The problem he is having is that the drugs and the still not great consistent sleep are causing him to be fatigued, sleepy, and have great difficulty focusing in class, especially math ( He is taking a 3rd year level Honors course as a freshman.)  He wants to take these classes and does not want to change his schedule...very determined to not let his problem slow  him down. So we are working with his Doctor to try switching to a Parkinson drug.  She is consulting with some sleep specialists who have experience with non adult PLMD patients. 

My husband and I are concerned about these drugs, but Max has asked for help.  I know that your replies are for educational purposes and we would never do anything without the advice of Max's doctors, but you seem so knowledgeable and understand how devastating this problem is.  If he is switched to a new medication , which do you think might work best for him?  How do you take him off these current drugs, especially the Klonopin, that he has been on for so long?  He is very slim, 5' 7, 110 lbs, and any thing that makes him nauseas for long would be a problem.

Thank you very much for your consideration of Max's problem.

Lin and Marty E.

Medical Reply

There is little experience using any of the RLS drugs in children.  Klonopin causes daytime sleepiness in the vast majority of adults who use the drug and it is extremely likely that your son is suffering from this problem (which is why I strongly recommend not using this drug in almost any RLS patient).
 
Neurontin works well for many RLS patients, but side effects often limit its use.
 
It is likely that Mirapex or Requip would work best for your son, but you should discuss the use of these medications in teenagers as there is no data on their use in this age group.
Sent: Thursday, February 20, 2003 9:37 AM
Subject: Restless Leg Syndrome
 
I was very happy to find an article in "Prevention" magazine outlining what I was feeling in my legs.  I started having these feeling about  6 years ago at the age of 49.  and had no clue what it was.  I contributed it to bad circulation and a 30 lb. weight gain.  Which I'm still convinced is part of the problem.  I have not read all the letters and don't know if all or any of the people writing have a weight problem.
 
I just wanted to share how I deal with it since I don't like taking medication meant for epilepsy etc.  I find that if I do a few pilates exercises before I go to bed it relieves them and I get to sleep easily.  If I wake up during the night I don't fight it, I get up have a glass of milk do some more of the exercises, even watch a little TV and go back to sleep. 

Usually by morning it will have subsided, as I normally experience this in the late evening into night time.  But by then I have to get up to go to work, so I'm usually a little tired during the day. Another problem is that my husband and I no longer sleep together and haven't for years due to my getting up and around sometimes 2 -3  times a night, and medication for colds etc. definitely makes it worse in my case.

 
I find that I cannot at times even go to a movie and sit for over 2 1/2 hours without my legs acting up -- and traveling in a plane for long trips is almost impossible.  Having RLS has taken the pleasure out of a lot of thing in my life, and its depressing to think there is no cure, but I've learnt to deal with it as best I can. 
 
Jo W.

Medical Reply

We have no information that weight changes or circulation problems have any effect on RLS (nor have I heard of any anecdotal cases).  It is understandable that you would like to avoid taking medication for your RLS, but when it starts affecting your life as you describe, it would be well worth considering trying Mirapex or Requip (which should have an excellent chance of relieving your symptoms and letting you sleep a normal night with your husband).
Sent: Thursday, February 20, 2003 6:54 PM
Subject: Re: RLS
 
I am a male, 79 years old and have had a severe case of Restless Legs Syndrome for the past 6 yrs.  I am a World War II veteran who experienced combat to a somewhat excessive degree. (If this information is pertinent) The VA  neurologist has graduated me up to 1.5 mg of Mirapex daily. It has very little impact on my symptoms so my private primary care doctor combined this with Darvon 65.  I have now worked up to six Darvon 65 capsules per day (2 at 2:00PM....2 at 10:00 PM......2 at 3:00 AM. 

This combination works reasonably well.  The VA furnishes both medications.   I would like very much to quit the Darvon, as it has unpleasant side affects such as constipation and appetite suppression.  Not to mention the slight hangovers, but the Mirapex alone will not do the job. 

I have been researching (via internet) cabergoline (Dostinex) and it sounds very promising to me. Could, and would, you give me any information, or opinion about these medications?  

Sincerely,
Leslie T.

Medical Reply

Dostinex works very well and is used a lot in Britain.  It is in the same class as Mirapex which means that it may not work much better than any other Parkinson disease drug.  It does have the advantage of being a once a day drug and not having sleepiness as a side effect.
 
Many severe RLS patients do not respond well to dopamine drugs and often need pain killers.  Ultram may work well and does not cause constipation as it is not a narcotic.
Sent: Saturday, February 22, 2003 1:53 PM
Subject: Mirapex or Requip

I have tried Requip several times and have stopped taking it because of nausea and no sleep when I am taking the Requip.  I have read quite a few of your medical reply and would like to know if Mirapex might help.  My doctor tell me they are the same. 

Thank you for you time and the support you give RLS people.

Medical Reply

Mirapex may or may not be better than Requip.  They are both dopamine agonists (they act like dopamine on the dopamine receptors) but are otherwise chemically different and are also metabolized differently.
 
The only way to tell whether or not Mirapex would help you without nausea would be to try it.
Sent: Saturday, February 22, 2003 5:04 PM
Subject: RLS

After having a lobotomy 3 1/2 years ago, I developed RLS.  My mother had RLS but never received treatment.  I don't think her symptoms were as severe as mine.  Before diagnosis I underwent some testing involving electric shock but my doctor said the tests showed nothing.  I experience the sensation of standing on low voltage electricity, occasionally my muscles will "crawl" in my calves or thighs.

I used to smoke and have occasionally fallen off the wagon and used the Nicoderm patch to help me get back "on".

I have been taking 300 mg Neurontin and it helps quite a bit.  My RX calls for 3 times a day, but I only take it twice a day, 1 in the morning and 1 at night about 1 hour before bedtime.  Neurontin is very expensive.  Two a day works for me, although 3 would be better I can live with 2, but I also take  one .05 lorazapam with the evening Neurontin. I sleep like a baby.

I have noticed that my hair is getting very thin.  (I'm 62 years old) and was wondering if this could be a side effect of the Neurontin.  I  am seeing  the neurologist in about a month but would appreciate a response from you.

Thanks,
Jo B.

Medical Reply

Hair loss (alopecia) is listed as an infrequent side effect of Neurontin, but it is much more likely that your age and problems may be the cause of this problem rather than the Neurontin.
Sent: Saturday, February 22, 2003 9:29 PM
Subject: RLS Eating My Life Away

I have had RLS since I was eight years old. It has become debilitating these past few years, lasting all day. It has "spread" from my legs to my body from the neck down, prominently occurring in my arms, hands, feet, and back. In 1996 I discussed this problems with my primary health physician. She didn’t know much about it. She discussed it with a Neurologist who suggested Klonopin.

At the time I didn’t know about it’s potential addictive properties or the possibility of having a seizure, or so I was told by another Neurologist. As he put it, "You’d better get off of Klonopin because if you went on a vacation and forgot the medication you could have a seizure." Klonopin worked as far as the RLS went. Actually, I don’t remember feeling anything. I just felt numb. I went into a detox facility March 2002 and really felt the effects of Klonopin’s addictive properties.

I have also been prescribed Neurontin, Amitriptyline, Norco, to mention a few. I had back surgery in 2000 and a C7 discectomy March 2002. These medications were obviously for chronic pain. I still take 300 mgs. of Neurontin three times per day; however, it does nothing for the RLS.

I have been on Prozac for years but switched to Wellbutrin. I have read that antidepressants could, and probably do, have a direct affect on RLS. I haven’t noticed a big difference in both antidepressants working against relief from RLS. I haven’t been able to take Wellbutrin because of nausea.

I also take hormones: 200 mgs. of Prometrium and 0.625 mg of Cenestin and 10 mgs. of Lipitor (when nausea doesn’t overcome me.)

I "cold-trucked" it until June 2002 when I saw a Sleep Disorder doctor. He put me on Mirapex which made me extremely nauseated. I was vomiting all the time. Then he prescribed Sinemet which did nothing. Requip was the last prescription which worked somewhat. I was on Requip until the first part of February 2003. I didn’t feel satisfied with this doctor. He didn’t "listen" to my story and how this horrible disorder has affected my life. Every time I called him to discuss medication I had to go into his office for a consultation. He had his receptionist call me to remind me of an appointment that I did not make. He gave me the impression that he was in the business for the money, no people skills.

I recently visited with a female Neurologist who replaced Requip with Permax. She suggested a blood test to check iron levels, etc. She wanted to check for Diabetes as well. I have an appointment Tuesday, February 25 to discuss the results and to see how Permax is doing. In the meantime, Permax is making me extremely nauseated. I can’t keep any food down; however, she suggested I take Domperidone (a compound drug for nausea) one-half hour prior to taking Permax. The domperidone is working about 70% of the time. At present I am taking .75 mgs of Permax three times per day, and has relieved approximately 80% of the RLS. I feel light-headed after I take Permax. I have to lay down after I take the medication. I also take Ambien. If I didn’t take Ambien I don’t know how I’d get to sleep! However, the 10 mgs of Ambien I take allows me to sleep approximately four (4) hours. I AM EXHAUSTED!

I have noticed that when I become extremely agitated Permax doesn’t alleviate this disorder. When I become exasperated I have a difficult time getting over an "attack." I’ve paced the kitchen floor, used vibratory stimulation on my hands, feet, and legs. I have to stretch my limbs all the time. Specifically in the evening, I lather my hands, feet, legs and, at times, back, with Bengay® which actually aids as a distraction and eases the horrible feelings RLS causes. The RLS moves from left to right, depending on the night.

After taking Domperidone with Permax, I can’t believe it wouldn’t have worked with Mirapex. This will be something to discuss on Tuesday.

RLS is severely affecting my life, marriage, mother-hood and grandmother-hood. I am extremely gloomy and have to constantly reassure myself that life will get better (someday.) I don’t feel safe driving a vehicle and feel trapped inside my home. I don’t have the energy or motivation to take a walk outside. Most days I can’t even read a book.

I do not drink alcohol, eat chocolate (but on occasion,) drink coffee or tea (except organic.). I would like to know how you have treated patients with similar symptoms.

Thank you for any advice you can provide.

Maryann M., 52 year old female.
Boise, Idaho.

Medical Reply

For patients with severe RLS who cannot tolerate Parkinson's disease drugs, pain killers work best.  Methadone works great and can be alternated with Ultram (to help eliminate chances of addiction which should be extremely low anyway if the narcotics are taken carefully).

A Reply from Maryann M.

Sent: Tuesday, February 25, 2003 3:11 PM
Subject: Re: RLS Eating My Life Away

Thank you for your response to my e-mail.  I saw the Neurologist today and she said I should take Neurontin as follows:

1 capsule (600 mgs) prior to bedtime; and thereafter 600 mgs x 3/day and after four days make assessment.   I should also wean myself off of Permax for approximately six days.   I was wondering what you thought of Neurontin solely helping me??

I am also very depressed but she didn't want to recommend any medication.  I discovered a supplement at our local health food store called 5-HTP.  Do you know much about this responding to depression very well?

I also read, on the Internet, about Lithium orotate.  I'm also wondering if this is safe to take for depression.  I talked to a knowledgeable person at the health food store and she said there is a huge controversy about Lithium being sold over-the-counter.

Thank you for whatever advice you can provide.

 Maryann M.

Medical Reply

Neurontin works for many RLS patients either alone or in combination with other RLS medications.  The problem with this drug is that very often to achieve therapeutic effects higher doses are needed.  Most of the patients develop side effects at these higher doses which often end up limiting the effectiveness of drug.
 
Neurologists like to use Neurontin as they are very familiar with the drug.  It is certainly worth a try as you can always stop the drug if problems occur.
 
I am not a specialist on depression but in general I would steer clear of OTC medications.
Sent: Wednesday, February 26, 2003 11:37 AM
Subject: RLS & PLMD

In April of 2002 I began experiencing strange symptoms.  These symptoms are listed below:

1) Involuntary shaking and jerking of my arms and legs during sleep and upon waking.  This occurred almost every night/morning.

2) Severe leg aches and cramping if I would sit still for two long.

3) Overwhelming urge to push hard on the floor with my legs or get up and walk around.

I began seeing a Neurologist in Central Illinois that specializes in Neuromuscular and Sleep Disorders.  He prescribed a battery of tests including: a full neurological work-up, complete blood work-up, EEG, Brain MRI, VEP and EMG.  All testing including blood work has came back within normal ranges and been negative.

After seeing me for approx. 6 months and ruling out all other possible medical conditions that would be characteristic of my symptoms my Neurologist came to the conclusion that I am suffering from PLMD and RLS.  He first prescribed me Sinemet (1) 25/100 per day which had absolutely no effect on my symptoms. He then prescribed me (1) Sinemet CR 50/200 per day and I have had amazing results.

For approx. 4 months my symptoms had almost completely gone away.  Recently I began experiencing my symptoms again although now quite as severe as without the Sinemet.  I do not want to increase my dosage of Sinemet as my symptoms reappear.

I hear both good and bad about using Sinemet.  A lot of people have said that Sinemet is very harmful to your body.  Is this true?  If so, is there any other medication that I can take that may help my PLMD and RLS?

Thanks,
Ryan

Medical Reply

You have a classic case of RLS/PLMD and did not need any testing to make the diagnosis as it is made solely on clinical symptoms.  Had you seen a sleep specialist knowledgeable about RLS, you would have been started on medication right away with no further testing except for a serum ferritin level (low levels indicate possible iron deficiency which may worsen RLS).
 
Sinemet works well for RLS at low doses (you are already at the maximum dose) as higher doses cause worsening of RLS (called augmentation and rebound).  The drugs of choice are now Mirapex or Requip which are also Parkinson's disease drugs (like Sinemet) but do not cause the problems that Sinemet does in patients who take it at higher doses.
Sent: Thursday, February 27, 2003 11:37 AM
Subject: RLS better with Mirapex
 
I wrote to you in April of 02 explaining my symptoms. At that time you recommended Mirapex or Requip.
 
Since then I have seen a neurologist and I have started on Mirapex. I thought I would start on a low dosage (.125 at bedtime ) to see if that would work. Well it has been absolutely miraculous. For the first time in years I'm ready to get up in the morning. I used to fee like crying when the alarm went off.
 
Thank you so much for your help.
 
Pam in Nova Scotia
Sent: Thursday, February 27, 2003 8:35 PM
Subject: Question on Mirapex

I have been taking Mirapex for several months for RLS.  It seemed to help in the beginning with a lot of the pain and most of the depression improving.  The sleep also improved.  After about a month everything went back to the way it had been.  I started seeing a new rheumatologist and he is gradually increasing the Mirapex dosage every three days.  At this point I am up to .50 mg per day. 

I am sleeping better but find that I am retaining water and have gained five pounds in just the week since I started increasing.  I also find that it isn't really helping with the pain, as I still wake up hurting. I am noticeably sleepy during the daytime (I am working) and find that my concentration and memory are not what they were.   I am reluctant to continue increasing this because I cannot afford to gain any more weight. I am already dealing with a weight problem and don't need to add more. 

I'm wondering if anyone else has noticed these side effects, and if there is some other medication I can take in place of the Mirapex that won't make me feel this way?

Medical Reply

Although you are still on a relatively low dose of Mirapex, side effects such as you have noted do happen in a minority of patients.  This certainly limits the effectiveness of the medication.  An alternative is Requip which is also a Parkinson's disease drug, but may have a different side effect profile while being just as effective as Mirapex.
 
If that does not work, then pain killers such as Ultram or narcotics may be quite helpful.  You may even be able to use this class of medication with lower doses of Mirapex or Requip (which may then be better tolerated with no side effects).
Sent: Thursday, February 27, 2003 2:54 PM
Subject: RLS Manual

Can you please tell me how I may obtain your manual on RLS?  I have an older one, but I am getting ready to move and have put it somewhere and can't find it. I have Fibromyalgia and a doctor put me on Zoloft which brought out RLS which I didn't even know I had.  After taking it for about 3 weeks, I was desperate to get some sleep. 

Then someone told me about a support group for RLS here in the Bay Area of Calif. and I went to their meeting and bought a copy of your earlier version of the manual.  I immediately stopped taking Zoloft.  I went to my regular general doctor and he gave me a prescription to Mirapex.  Ahhh, what a wonderful night of sleep I finally had!!

Recently I decided to take a holiday from Mirapex.  The first night, I got 4 hours of sleep and 6 hours of thrashing in bed.  The second night, I got about 1/2 hour of sleep.  By 6:00 a.m., I was angry and very afraid since I now know that I cannot go without medication for RLS.

After talking to two people in support groups, writing many e-mails and then finding your web site, I feel much better.  Now, it doesn't seem so hopeless.   When I read the letters of others, I see that there are others much worse off than me.  Also, I realize what a wonderful doctor I have.  He appreciates the information I send him on Fibromyalgia and RLS and is willing to prescribe medications like Mirapex which completely control my symptoms.  I guess, I just need a slightly higher dosage. 

Thank you, thank you just for being there.  Your web site has the most comprehensive information to help people that I have ever seen. 

Sincerely,
Jan F.

Medical Reply

There is no need to take a drug holiday from Mirapex, so do not suffer needlessly.  If you are not fully controlled, check with your doctor about slowly increasing your dose until you have no RLS symptoms at all.
 
RLS booklets can be purchased from Mary Snodgrass.
Sent: Friday, February 28, 2003 4:44 PM
Subject: Generic drugs

I just received information from my Blue Cross provider indicating it will no longer pay for brand name prescriptions when a generic equivalent is available, even when the doctor marks "dispense as
written" or "do not substitute".

I want to know if there are generic equivalents for Requip and Mirapex. If there are generic equivalents, are they as effective as the brand name prescription.

Ellen S.

Medical Reply

Sorry, no generic equivalent drugs.  Mirapex and Requip have been out for only 3-5 years and it takes about 20 years to become generic.
Sent: Saturday, March 01, 2003 7:17 PM
Subject: Just need to vent about my RLS

I remember as a child hearing my mother complain about discomfort in her legs.  I sometimes would go with her to the doctors and would translate for her (her English was limited) and describe to the doctors what she felt.  The doctors would look at her with this blank look in their eyes and offer no solution.  She would leave the doctors office feeling helpless - I too felt helpless.

I cannot remember when I started suffering from RLS, but I knew that "I had what my mother had".  When I would go to my primary care physician for my annual physical, I would complain about "the indescribable pain"  I felt on my legs.  The doctors would make me feel as if I was making these symptoms up.  Another doctor would ask me questions as if I was in depressive state!  I basically gave up - and learn to live with my restless legs which resulted in restless nights!

It wasn't until last year as I was watching television that during the News there was a "Health" portion of the program that mention "Restless Leg Syndrome" - I said to myself screaming THAT'S IT! that is what I have - I was finally able to associate a name to what I felt.

Recently, during a pre-employment physical, a very caring nurse was familiar with RLS and recommended that I take: Calcium Citrate (500 mg), Magnesium with Vitamin D (500 mg), Vitamin B6 (50 mg) and Vitamin E (400mg).  I will soon try this to see if this will help me.  Maybe you should try this too - with your doctor's approval of course.

I must say, I feel comforted that I am not going crazy and that there are other people that can relate to what I am going through (I thought that my mom and I were the only ones suffering from this).

So to my new found RLS family - let's stay hopeful and keep searching for relief.

Take care,
V.Gomez - Bronx, NY

Medical Reply

Although minerals such as calcium and magnesium and vitamins may rarely be helpful for RLS, there are much better treatments.  Ask your doctor to start you on Mirapex or Requip and you have an excellent chance of not having to suffer from RLS any longer.
Sent: Monday, March 03, 2003 1:15 AM
Subject: is this PLMD or RLS?

I am a 35 year old female with no children who has had "weird sensations" in my legs since I was about 15 years old.  Generally as far back as I can remember these sensations only happened when I was sitting for long periods, in the movies or on long car and plane rides.   They occur in either one leg or the other, sort of feelings or twinges coming up a leg from the foot about every 10-40 seconds or so.

Since I always would contract my muscles whenever this would happen I would have a small spasm or tremor that I would try to hold down.  If I do not hold my leg down it involuntarily kicks or shakes up.  I am soon to be married and my fiancé has said in the last 3 months or so that I am kicking him at night. 

t is to the point where he is sleeping on the couch because my "kicks" shake the mattress and wake him up so many times per night that he gets no sleep.  He had never complained about this or noticed it at all until recently.  I on the other hand sleep right through it and never wake up.  Whenever he wakes me because of it I have trouble even believing that I was doing it!  I am not sure if this is RLS or PLMD, because I don't seem to suffer any sleep loss because of it, and it has only shown up in my sleep recently. 

I am not sure what to do as I don't want to take any medication since I plan on getting pregnant in the near future.  Any advice would be appreciated to save my relationship. We are even looking at getting a new bed,  perhaps one with a foam mattress that would not shake.  But at this point we are not sure what to do.

Thanks! 

Medical Reply

You have both RLS and PLMD.  The weird sensations in your legs when you are sitting are the RLS sensations.  The leg jerking that occurs while asleep (this occurs in over 85% of RLS sufferers) is your PLMD.
 
If you are not having any sleepiness during the daytime (which would result from arousals from the PLMD while asleep that you would not be aware of), then you do not actually need any medical treatment.  The best solution to your problem would be to buy twin beds that could be place next to each other, but separated by 4-5 inches when you are both ready to fall asleep.  That separation should be sufficient to eliminate any sensations from your PLMD reaching your spouse.
 
If that solution does not appeal to you and your spouse then one of the newer memory foam mattresses (such as the TempurPedic, king size preferably) would be a second best choice to reduce your PLMD mattress shaking.
Sent: Tuesday, March 04, 2003 5:56 AM
Subject: Mirapex

I have Nocturnal Myoclonus. I also have Bipolar Disorder and Sleep Apnea The BP and sleep apnea are being treated.

My question is this: I can't tolerate other benzodiazepines other than Ativan which I already take and it does nothing for the PLMD. I was tried on Mirapex and it seemed to make things worse. I was waking up constantly during the night.  Is this a common side effect of Mirapex? And could you suggest another good alternative?

Thank you,
Julie

Medical Reply

Mirapex can cause insomnia (or strangely enough, sleepiness in others).  Alternatives (in the Parkinson's disease group) would be Requip or Permax.  These drugs may or may not be better tolerated than Mirapex (this is a very individual response).
 
If you cannot tolerate the above drugs, then Neurontin would be another alternative.
Sent: Tuesday, March 04, 2003 11:12 AM
Subject: RLS & PLMD

I have RLS & PLMD. I’ve had this since I was a young child and am now 60 yrs. Old. My mother, sister and two of my sons also suffer from this affliction. As I get older it gets worse. I experience it in both calves, upper thighs both legs, occasionally both arms and pain, during the day, behind each kneecap and in each calf. Occasionally it retreats completely only to come back with a vengeance then I can’t sleep at all. Staying up all night at 60 is quite punishing.

I live in Norway and my good Doctor through the years has prescribed Tegretol, Valium, Zopiclone, magnesium and calcium. All have been effective for a short period of time then I must try something new. As from today I’m now back on Tegretol.

I discussed your website with my Doctor today and he gave me permission to contact you about several of the medications you recommend. I also contacted the local pharmacist and he informed me that in Norway they can supply Dostinex; Cabaser; and Requip. Mirapex can only be obtained from outside Norway making it a very expensive alternative. I’m not familiar with these medications so I hope I got them right.

I’m hoping that Tegretol can replace the Zopiclone, magnesium and calcium tablets which I have been taking up till today. I’m also hoping that you can prescribe (recommend) something other than the Tegretol which I begin with today.

If I’m fortunate enough in that you recommend some medication for me would you please explain why, in doctor terminology, as my doctor, who is unfamiliar with these medications, will have to prescribe what you recommend (reasons for, side effects etc.). 

Kindest regards,
Iain C. W. (photographer) 

P:S: I found that my taking MSM aggravates RLS but its effectivity outweighs this.

Medical Reply

Tegretol is not generally used as an RLS medication.  It has been studied and only has demonstrated only limited effect for most RLS patients.
 
Requip or Cabaser/Dostinex (these are the same, but different names in Europe/USA) are both dopamine drugs and are the drugs of choice for RLS.  This is because in many medical studies and in clinical practice they have been found to be very effective for RLS and generally have few side effects.
 
If you are started on one of these medications, you should stop the Tegretol and you should need Zopiclone only if you have insomnia like any other person who does not suffer from RLS/PLMD.
Sent: Tuesday, March 04, 2003 1:39 PM
Subject: RLS remedy, Celance?
 
I have heard that the Parkinson drug   CELANCE  is very helpful.  Could you tell me something about it?
 
Thank you,
Shiona McC.

Medical Reply

Celance is pergolide which is called Permax here in the USA.  In Europe and Britain it is called Celance.  This drug is the first dopamine agonist to be used for RLS.  It has a significant side effect profile which includes nausea (and anti-nausea medication makes RLS worse) and nasal congestion.
 
The side effects often limit its use but it those patients who do not experience these side effects it can be a very useful drug. The newer dopamine drugs (Mirapex, Requip and Cabaser/Dostinex) work better with less side effects in general.
Sent: Tuesday, March 04, 2003 11:29 PM
Subject: Do I have RLS?
 
My name is Holly and I am 28 years old. I have some of the symptoms that the other letters describe, but I am not sure if it can be qualified as RLS. When I go to sleep most nights and sometimes if I am sitting still watching TV I get an "awareness" of my leg and feel like I have to move it. In a lot of the other letters, the people complain of pain, but I can't really describe as painful, it's more uncomfortable and bothersome than anything else.

It is effecting me because I am constantly having to toss and turn at night when I am trying to fall asleep because I simply can't hold it still. I am sitting up at 1:30 in the morning looking this up because I just can't get to sleep and I had seen this ailment mentioned on a TV program.

Does this sound like RLS to you? My main concern is that this is going to get worse as I get older. Right now, it hadn't made my life unbearable, it's more of a nuisance than anything, but should I seek treatment now or wait until the condition worsens? I would really appreciate any input you can give me and information on any doctors in the Dallas/Ft. Worth area who deal with RLS.

 
Sincerely,
Holly S., Dallas, Texas

Medical Reply

What you are describing is more typical of RLS than those who have pain with their RLS.  Most RLS patients do not have pain, but rather an hard to describe discomfort associated with an almost irresistible urge to move the affected limb. 
 
Treatment is only for symptoms so you only need medication if you feel that treatment is necessary.  You may be surprised how much better you will feel if you do take appropriate medication.
 
RLS gets worse as you get older, but it will do so whether or not you treat it now or later.
Sent: Wednesday, March 05, 2003 5:08 PM
Subject: RLS better with magnesium supplements
 
Since I was a child I have suffered from restless leg syndrome.  I used to get out of bed in the middle of the night and do some stretches to try to ease the discomfort.  I have moved frequently and I have noticed that when I am living on city water I have no symptoms. when I live on well water I have symptoms. 

I went to a doctor about it a few years ago and he told me to take magnesium supplements.  At the time I was living on well water and suffering greatly. I took the magnesium on a daily basis and I rarely suffer anymore. I would suggest this to anyone suffering from RLS and I hope my information will help.

 
sincerely,
Tammy
Sent: Thursday, March 06, 2003 8:46 PM
Subject: Methadone helped my RLS

Thank you so much for your past responses to my inquiries. You have been very helpful. I have now been on methadone for about 4 weeks and it has been a miracle for me. I am virtually free of RLS symptoms. I know I will have to watch this medication very carefully. It is such a treat to go to bed and fall asleep! And I can sit and read a book--for the first time in years.

Keep up this great Web site.

Sent: Thursday, March 06, 2003 1:30 AM
Subject: RLS better with "CuddleEwe" wool pad.
 
I have had RLS since childhood.  The aching pain in the arms and legs seems to be directed to the "tissue" of the thighs, hips, and upper arms.  As everyone with RLS says, it's hard to explain.  I also have the involuntary leg jerking.  For me, RLS is extreme during the evening hours and damp weather and I can almost tell you what time it is by when the symptoms begin. 

During the winter months it's around 7:30-8:30pm.  During the spring and summer months it begins around 8:15-8:45pm.  As a child, through my teenage years, I would sleep in sweat clothes.  The warmth seemed to help.  It was worse during pregnancy.  I would get up during the night and lie down in a hot bathtub, get out and put on warm clothes -- and this was in Southern California.  

We read an advertisement for a "CuddleEwe," which is a wool pad for the bed.  I looked it up on the web.  It is not cheap but we thought, why not try it. (It has a return policy that made it cost effective.)  When I get into bed, it relieves my symptoms almost immediately.  My 88 year old mother has the same symptoms so we gave her one for Christmas.  She is amazed at the relief.  

My brother, who also has the symptoms, has purchased the pad.  He swears by it.  It has not taken away the RLS, but the symptoms go away almost as soon as I get into bed.  You might want to look into it.  It is drug free!

 
Linda E.
Duvall WA 
Sent: Monday, March 10, 2003 2:06 AM
Subject: Quinine for RLS treatment
 
Just for your information, this past fall after taking quinine pills, and ibuprofen while on a car trip across our state, I came down with what i thought was the flu. Symptoms included, diarrhea and vomiting. After several days of this I went to the emergency room to discover my kidneys had shut down.

Evidently the combination of quinine and ibuprofen, (a combination I had taken several times before) caused Thrombotic Thrombocytopenic Purpura (TTP), which in turn caused the kidney failure. I was immediately started on kidney dialysis and plasmaphoresis. I was hospitalized for 21 days, and am very lucky to be alive.

The form I took the quinine pill was in Leg-A-trim, an over counter herbal medicine, and a bottle of quinine water. I would hope this "drug" would be taken off the market, as I certainly would never want anyone to go through what I went through. I have used the pills for the past 4 years without any side effects. This time certainly turned out differently. Just wanted to let you know my experience with quinine.

Thank you,

Kandy Hastings
Rapid City, SD

Medical Reply

Quinine has no role in RLS although it works well for leg cramps (which is often confused by doctors for RLS complaints).  This drug has significant side effects, but TTP is not a common one.  TTP is a rare side effect which should not preclude anyone from using quinine for legitimate problems when it is needed.
 
All drugs should be taken with caution and only used if the benefits far outweigh the potential risks.
Sent: Monday, March 10, 2003 3:06 AM
Subject: RLS
 
Well here I am at 2:55 a.m., awake, trying to find some information about this pain in my legs that is been going for a few years now.  Thank you for your site, it has been very helpful to read all your letters, and find out that I'm not weird after all. I always thought that maybe it was something that run only in my family (my mother, my sister, and two of my sons have).  Until now!  

What have been working for me, is rubbing some Icy-Hot or Ben-Gay cream on my legs, but I thing I'm running out of luck, it doesn't seem to work too well anymore.  

Wishing you all a good health, I say good-bye,
Elsa

Medical Reply

Using creams, massage, etc. may help RLS when it is quite mild.  When the RLS gets worse (keeps you up at night or prevents you from doing activities like going to movies), then it is time to consider prescription medication such as Mirapex or Requip.  It will make your life much more tolerable and enjoyable.
Sent: Tuesday, March 11, 2003 2:11 PM
Subject: RLS not better with Mirapex or Neurontin

I am so thankful for your website. My doctor knows very little about RLS . I have had RLS for years and only in the last 2 years knew it had a name thanks to the internet.

I did go to a doctor that knew about RLS. She has prescribed Mirapex .125  to be taken at bedtime. It help the legs but still had insomnia. she then told me to up the medication to 2 pills. That caused a headache and I still had insomnia. She then gave me Neurontin. It does make me sleepy but doesn't effect the legs. I don't know where to go with this now. I can't get into see her until June and  when I call I have to leave messages and she then has her nurse call with a different medication to try.  

I don't know what meds to take with what.  Can I take the Mirapex early in evening and the Neurontin at bedtime. I don't want to wreck my health with drugs but I have  to get some sleep sometime.

TW

Medical Reply

It is unlikely that you will affect your health by taking your RLS medications (unless you get sleep deprived from insomnia).  Taking the Mirapex early and the Neurontin just before bed may be helpful, but you should check with your doctor first.
 
It may be worth a trial of Requip (similar to Mirapex, but may not have the same side effect of insomnia).  Adding a small amount of a pain pill (Ultram or Vicodin) may also be quite helpful for your RLS and insomnia.
Sent: Wednesday, March 12, 2003 10:29 AM
Subject: PLMD RLS treatment
 
I have had RLS and PLMD for the last 7 years.  I wake up 180 times a night according to the testing hospital, and at the beginning was told I had severe RLS.  After years of treatment, I have tried 35-40 different prescriptions, and nothing gets me a restful sleep.  The doctors later said my RLS was moderate (still woke up 180 times during the next test.  I have been taking 7.5 Imovane, 30 temazepam and 5 mg of Nozinan.  Before the Nozinan it was Remeron. 

I do sleep with this combination but never feel rested.  I have not had a decent day in over 7 years and I am becoming very desperate.  I have taken all the Parkinson related drugs, which had no effect, numerous anti-depressants, Ambien, sonata etc.

I just stated taking Dilaudid 4mg last night along with my usual 7.5 Imovane and 30 mg temazepam but Dilaudid scares me a bit (although I did take Oxycocet with no results).    Should I continue to try Dilaudid out and should I taper off the other drugs? 

If I take no medication at all, I simply do not sleep that night.  I have tried naturopath, homeopathic medicine, sleep restriction. relaxation therapy with no results.  It does not seem to matter how much I sleep, I am very tired all day where now it is an effort to even leave the house.

Thank you for your comments,
TF

Medical Reply

Your PLMD may be moderate, but your RLS is definitely severe (RLS cannot be measured by a sleep study, but rather by your subjective symptoms.
 
Dilaudid is a very potent narcotic which should work very well for RLS.  It should work well with Imovane (zopiclone, only available in Canada and similar to Ambien) which should allow you to use a lower dose of Dilaudid than without a sleeping pill.  Restoril should not generally be added to Imovane or any other sleeping pill as they act on similar receptors.
 
Methadone may work even better than Dilaudid, but there is considerable individual variation. If taken carefully (the minimum dose and only when needed) addiction and tolerance should occur very rarely with either of these drugs.

A Reply from TF

Sent: Thursday, March 27, 2003 9:19 AM
Subject: Re: PLMD RLS treatment
 
Thank you for your reply.  I have been taking 4 mg Dilaudid along with 30 Restoril and 7.5 Imovane.  This is the best I have felt in years although I am still very tired.  Even with this combo I go to bed at 10:00 pm and don't go to sleep until maybe 1:30 and awake around 6:00, although sometimes I can go back to sleep.  The Dilaudid appears to give me some relief during the night and no hangover effect. 

When I tried to cut back on the Restoril to 15 mg, as you suggested,  I had virtually the same problems going to sleep but felt very tired the next day, and in fact so tired I was unable to do anything but lay down. 

 

My question is I would like to simplify what I am taking.  If I try again to cut down and eventually off Restoril, do I then increase the amount of Dilaudid.  I have read that increasing the amount of Imovane over 7.5 has no more effect.

Dilaudid has given me some hope for the first time in 7 years.  My body has shown a tolerance for drugs, lower amount never seem to work, so what would be a safe amount of Dilaudid and do you think if I increased it before bed I may be able to go off everything else?

Medical Reply

I have no experience with Dilaudid (I have never used this drug as other similar ones such as methadone are available here) so it is hard to comment.  In general, we like to keep the dose of any narcotic as low as possible using the lowest dose that does the job.  Dilaudid at 4 mg is the medium dose, as it also comes in an 8 mg tablet. 
 
Using the drug once a day is generally safe.  Going to 8 mg may work with decreasing (or eliminating) Restoril, but only trial and error will decide this issue.
Sent: Tuesday, March 18, 2003 8:24 PM
Subject: Restless legs in babies?
 
My son is 16 months old and I believe he has been suffering from restless leg syndrome since he was 5 months old.  Is there anything I can do for him?  I've tried hot baths, massage, Motrin, Tylenol, nothing seems to really help. 

Since he can't talk it's hard to accurately diagnose him with restless leg syndrome but he seems to have all the symptoms.  Is there any medication that is safe for him to take?  Any advice is greatly appreciated. 

Thanks,
Katie T.

Medical Reply

RLS is extremely difficult to diagnose in young children, let alone one's that can't talk.  It is mostly diagnosed retrospectively rather than while it is occurring.  The other problem is that there are very few RLS specialists and extremely few (if any) pediatric RLS specialists.
 
There are no drugs that are approved in children and any physician who treats children has the dilemma of using a drug that does not have an FDA approval for RLS and also no approval for usage in children.
 
Sorry that I do not have better information for you, but this is a very tough and neglected area of medicine.
Sent: Tuesday, March 18, 2003 11:59 PM
Subject: PLMD - modafinil

I have had RLS and PLMS since childhood ( I am now 50).  Both are very severe.  I don't get good sleep at all through the night and am very tired all day.  I have been on Klonopin, Sinemet, Mirapex just to name a few.  I went back on the Klonopin last year and it seems to do the best, although it helps really only slightly.  I had bad effects from the Sinemet and Mirapex.  Other drugs didn't do anything.
 
I have learned through all my trials and errors that my chance of ever getting better sleep at night is pretty nil.  And I am thankful at least for the Klonopin for what it does do.
 
I read in a sleep book that modafinil is used for narcolepsy and excessive daytime sleepiness disorders such as PLMD.  Do you have any opinion on this subject?  As I get older, it is harder to cope with the daytime sleepiness.
 
Your web helped me a couple of years ago regarding a question about Mirapex.  I hope you can give me information now on modafinil and it's use in treating excessive daytime sleepiness resulting from PLMD.  Are doctors prescribing this?  Is it even safe for PLMD?
 
Thank you again,
 
Ruth J.
Oregon

Medical Reply

Provigil (modafinil) is a very good narcolepsy drug which helps patients stay awake.  We have no other primary treatment for narcolepsy, so we must treat the daytime sleepiness symptomatically.
 
Provigil might help your daytime sleepiness, but it is always better to treat the primary problem (the RLS and PLMD) which is causing your lack of sleep.  You will get some improvement for a while, but the lack of sleep will still likely result in problems in the future.
 
The other concern is that although you like Klonopin for its benefits of putting you to sleep, it has a very long half-life and results in increased daytime sleepiness which will superimpose itself on the sleepiness you are having from lack of sleep.  Shorter sleeping pills such as Ambien or Halcion should be considered.
 
Another choice for your RLS/PLMD would be methadone.
Sent: Wednesday, March 19, 2003 1:00 AM
Subject: RLS

I am a 62 year old women who has had Insomnia and Restless Legs for at least 30 years, if not more.  (My mother used to rub my back when I was a child because I was so restless I couldn't get to sleep).  I can't sit in a movie theater for more than a half hour before the pain in my legs is so great I start "wiggling" my legs to get some relief.  The same thing applies to airplane trips and road trips.  I'm usually pretty good on road trips unless we travel a little later in the day and then it hits me. 

Daytime activities usually are not affected with Restless Legs.  Doctor's have prescribed about every sleeping pill, antidepressant, and even some Parkinson medication but with no avail -- it only makes the situation worse.  It has gotten so I don't know what comes first, the insomnia that causes RLS or RLS that causes insomnia. 

I had pretty much given up and decided that I would just have to live with it when I discovered as I was recovering from a shoulder surgery that the hydrocodone the doctor prescribed for me for pain allowed me to fall asleep without waking until morning.  Also, if I have had a severe cough and am prescribed a cough medicine with codeine I also sleep very well. 

Since codeine is a narcotic I hesitate to abuse it.  However, I have tried a half dose of hydrocodone and 5 mg Ambien and that works also.  Ambien by itself (even 10 mg.) makes my insomnia worse.  I haven't talked to my doctor about this latest discovery since I'm afraid I'm getting into a habit forming situation.  I took only the Ambien tonight and am "climbing the walls". 

Do you have any suggestions?

Thanks,

Jan U.

Medical Reply

If the Parkinson's disease medications (make sure that you have tried both Mirapex and Requip) do not work for you, then narcotics are a good second choice.  Neurontin may also be considered, but it does have more side effects (such as sleepiness) than the Parkinson's disease drugs.
 
Ultram (a non-narcotic pain killer) can also be used and alternated (every few days) with a narcotic which would dramatically decrease the chance of addiction/tolerance.
Sent: Saturday, March 22, 2003 6:18 AM
Subject: Avoiding sweets and magnesium for RLS
 
I have suffered with RLS for many years and I have done a lot of research on it. About a year ago my family doctor put me on Sinemet and it has been a Godsend. Anyone who has never suffered with RLS just cannot understand what we go through. ]

It was great to find this site. I have a couple of tips to pass on that has really helped me. SWEETS make RLS symptoms worse. I discovered this after reading an article about RLS and monitoring my diet. It is amazing how much worse my symptoms are if I eat sweets.

Also, a new doctor that I saw suggested large doses of magnesium. If I take magnesium 2-3 times a day and stay away from sweets I manage most days without Sinemet. Hope this info will help others out there who are suffering.

Medical Reply

Thank you for your information on what helps your RLS.  If you need more than 2 of the Sinemet 25/100 tablets per day, then you should ask your doctor to consider changing the drug to Mirapex or Requip to avoid possible problems with augmentation and rebound.
Sent: Saturday, March 22, 2003 4:26 PM
Subject: RLS related to ADD/ADHD?

I was recently diagnosed with RLS and put on Klonopin. This works great for bedtime, but I also suffer during the day. Is there any medication that works that doesn't make you drowsy?

Also, is RLS a symptom of or type of ADD/ADHD?

Thank you SO much!

Medical Reply

Untreated RLS can result in ADD/ADHD, but not vice versa.
 
Mirapex or Requip are much better RLS drugs than Klonopin and can taken during the daytime (unless you experience sleepiness as a side effect).
Sent: Sunday, March 23, 2003 2:11 PM
Subject: Soma for RLS?

Has anyone ever heard of the drug SOMA being given for RLS?    A friend said this worked well for his RLS and he  is able to sleep at night without any side effects from the drug.  He thinks it is a miracle drug. What is your input on this treatment?

TW

Medical Reply

Soma is a muscle relaxant and generally does not help RLS.  This drug causes sedation (as do most muscle relaxants) and it is likely that by putting your friend to sleep, this drug seems to helping his RLS.  There have been several anecdotal reports of muscle relaxants helping RLS, but for most patients they do not do anything for this problem.
 
There are much better drugs (Mirapex or Requip) for treating RLS.
Sent: Monday, March 24, 2003 1:24 PM
Subject: Usefulness of Dopamine Agonists and for how long?
 
In reading through the doctor responses to the last batch of these patient letters, you seem to recommend they try Dopamine Agonists most of the time. I would like to know what the average and the longest range of time is that RLS patients have been able to stay on Dopamine Agonists, such as Permax, Mirapex, or Requip, before they have to go off of them due to rebound or augmentation?

I have been on Requip, .75 mg. (.25 x 3 @ day, taken 1-2 hrs before bed) and was on Permax before that for 3 years, 1.5 mg (.5 x 3 @ day - I think). Each time rebound and then augmentation set in. I hate to increase the Requip again because it was so awful to go off of the Permax; I don't want to go through that again. 

Maybe they haven't been out long enough, but do doctors think that these drugs can help some people with RLS indefinitely (all their lives)? Thank you.

 
Margaret/54/PA

Medical Reply

Rebound and augmentation of RLS symptoms occur very commonly with Sinemet, but much less commonly with the other dopamine agonists.  With Permax, Requip or Mirapex, tolerance occurs less than 15% of the time and it is different that the tolerance that occurs with Sinemet. 
 
With the newer drugs tolerance can be dealt with by increasing the dose of the medication (unlike with Sinemet where increasing the dose worsens the tolerance).  In addition, there is no cross tolerance amongst the newer agents, thus you can change from one to another thus reducing the effect of tolerance.  I have several patients that alternate (from every month to every several months) amongst the different dopamine agonists.
 
Augmentation occurs much less frequently with the newer drugs (likely only a few percent of users).
 
Most RLS sufferers who respond to the newer dopamine drugs should continue to respond indefinitely.  I have many patients who have been on Permax, Mirapex or Requip since they were available and have been doing well.  With time, RLS often gets worse and will thus obviously require an increase in medication.
Sent: Tuesday, March 25, 2003 6:21 PM
Subject: Massage worsening RLS?

You've helped me a number of times in the past and I really appreciate it.  Now, I have another question.  At the age of 82, I've been treating myself to a one hour massage every other week and I love it.  However, several times lately I've noticed that, as she starts working on my left leg, mild RLS symptoms start behind my knee and spread upward to my left buttock. 

I have a pinched nerve in my back which is causing quite a bit of pain in my left leg along with a feeling that my left leg won't hold me up.  I'm told the only cure for the pinched nerve is surgery which is out of the question because of diabetes and congestive heart failure.   

Could there be a connection between the massage and the RLS,  which, by the way, doesn't usually last very long after the massage is over?  This is not massive problem.  I'm just curious about the connection.  And, of course, I always welcome your suggestions.    

Eleanor G.,
Glendale CA

Medical Reply

Massage generally helps RLS so it is difficult to explain why in your case it worsens your RLS symptoms.  It is possible that it is just due to being in the lying position (which can make RLS worse) while getting the massage.
Sent: Tuesday, March 25, 2003 9:56 PM
Subject: RLS Therapy with Chinese Energy Therapy

I have started visiting a Chinese energy therapist to try treatment for my RLS and PLMD. I have had 3 visits so far over a period of 9 days. I am also using Sinemet and have agreed not to drop it unless we see real improvement. The treatment consists of electrode pads connected to my back, stomach, legs and feet which pulse to ‘unblock my channels’, followed by a 20 minute sauna. I also have a bunch of herbals pills to take 3 times a day. I have been told for the first week I should eat vegetarian only, with zero protein and following that eat my protein at lunch time, not with the evening meal. 

This treatment works on the basis that the problem is my bowel and if she heals my bowel, my RLS will go away together with my sinus problems and sore back from external injuries. 

The therapist has many documented case studies at www.chineseenergytherapy.co.nz although she hasn’t heard of RLS. 

I couldn’t find anything on the web site other than electromagnetic therapy. The treatment is pretty expensive, but I thought I could try it for a few weeks, just in case. Have you heard of this type of therapy before? I couldn’t find any references on the web site. 

I have had RLS for around 6 years that I know of and am not having a good time with Sinemet. Mirapex is not available in New Zealand.

Regards,
Luigi / 46 / New Zealand

Medical Reply

I know nothing about Chinese energy therapy but am amazed that a health practitioner would claim to be able to treat a condition (RLS) that she had never heard of before.  There is no literature showing that this therapy would be helpful for RLS (or really anything else, other than the obvious placebo effect that any therapy can give if the expectation is that it will help).
 
If Mirapex is not available in Australia, Permax (not as good as Mirapex, but much better than Sinemet) would be reasonable choice.  Also, see if Permax or cabergoline are available as they are also very effective.
Sent: Friday, March 28, 2003 12:29 AM
Subject: Description of RLS

 My description of RLS is "Trapped in your body while being tortured".  Some of the descriptions describing RLS seem to make it almost a laughing matter to some people that read it. I think the public needs to know that it can truly ruin your life.    

I do have a very severe case of RLS. My mother and father both had it so I really suffer with it.  I have it so bad that if I did not have medication to help relieve (to some extent) some of the suffering, I would probably commit suicide. I could not spend my life suffering as I do. I am really that miserable. My life is truly a nightmare almost every night, once in a while I have some relief.   

I have it not only at night but also a lot of the time in the daytime. Sometime I can get in the car and be fine and 10 minutes later I am suffering to such an extent we have to pull over on the freeway so I can get out. We do not go to the movies or on any long trips. I cannot even sit down and have dinner when I get home from work most of the time, I have to stand at the counter. I am 64 years old, and it started in my forties. The last 5 years have been the worst.         

Below is a very interesting fact that I hope you can pass on to someone that is researching this disease.

My mother had RLS starting when she was 40 and still remembers it as one of the worse things she has ever been through and she has been through a lot in her life (she is now 88 yrs. old).     My mother had a nervous breakdown in her late forties and was given shock treatments 2  times while in a mental hospital. I know that RLS only gets worse as you get older. We just realized recently that her RLS stopped totally after receiving the shock treatments. I think this information would be very interesting to the research department.    

Thanks for listening,
Lynn D

Medical Reply

Thank you for your description of your RLS and your information about your mother's RLS.  We never intend to make light of RLS symptoms, but some patients with mild RLS who have gotten relief from various treatments, may not realize how severe this disease can be.
 
Since your RLS is so severe, you should consider getting treatment as almost all RLS patients can do great with proper RLS therapy.
Sent: Monday, March 31, 2003 7:25 AM
Subject: Medications for RLS.

My mother suffers from RLS as well as fibromyalgia. She has been on Sinemet for years. About 4 years ago she was put on methadone 10mg at bedtime. Two weeks ago she decided to taper off the methadone with the help of acupuncture. It has been a complete failure.

Her RLS has worsened. She has not slept in 2 weeks. Could it be that the Sinemet was no longer working and the methadone was helping to control her RLS?  If this is the case and she is to switch to another RLS drug such as Permax, should she taper off of the Sinemet?

Also I have read about involuntary movement side effects from Sinemet? Are they reversible if the medication is discontinued?

Thank you,
Tammie D.

Medical Reply

It is extremely likely that the methadone was taking care of the RLS and the Sinemet may not have been doing much or even may even have caused the RLS to worsen (augmentation and rebound).  Getting off of Sinemet is a good idea and substituting Mirapex or Requip should be much better.
 
The abnormal movements that are associated with Sinemet in some patients (called tardive dyskinesia) may or may not improve with cessation of the drug.
Sent: Tuesday, April 01, 2003 6:04 AM
Subject: Help

I am finally at the end of the road from dealing with RLS.  I am a 49 year old female who has suffered with RLS since early childhood.  My mother suffered terrible with this problem until her death at the young age of 57 in 1984.  The sad thing was in the earlier years she was told by neurologists that the problem was "in her head" due to the lack of understanding about RLS. 

I was fortunate my family doctor knew of this problem in the mid eighties and she has always tried to help me as best she could. I started out in 1985 on low doses of Tylenol #3 PRN in 1985 along with Tegretol, which provided some relief.  A 30 day supply of Tylenol #3 would last me a couple of months.  As the condition worsened down through the years, she has sent me to different neurologists and I even had my endocrinologist treating me for RLS. 

I am currently on a pain medicine (either Tylenol #3 or Darvocet N-100), Mirapex, Neurontin, and Sinemet as needed.  However, I do experience augmentation rather quickly with regular doses of Sinemet, which is upsetting because it works so well in the beginning of treatment. I had a hysterectomy in March, 2002 and take Estrace.  I was severely anemic from heavy bleeding prior to the hysterectomy but my blood count has improved significantly. 

I have done very well since the hysterectomy but I do believe my RLS symptoms have worsened since the surgery.  For instance, on three or four occasions this past year, I have actually had nights when none of the medications helped with my symptoms and I was up literally all night long and wouldn't be able to fall asleep until around 7 a.m. (really a problem considering I work 6 a.m. to 2 p.m.) 

I was also diagnosed with fibromyalgia and CFIDS this past year and needless to say, along with RLS, I am constantly in a state of exhaustion. Last night was one of those horrible nights.  I took my usual Mirapex and Neurontin, but also ended up taking three Tylenol #3, and out of desperation two Darvocet N-100's (that I had left over from an old prescription) during the course of the night before I finally got relief and was able to fall asleep. 

Nights this severe are becoming more frequent and it scares me.    I keep feeling that there has got to be something out there that I can take each night and simply fall asleep like normal people do.   I really don't feel like I can go on much further without some good quality of sleep. 

Can you tell me what my options are at this point.  The neurologist I see says I am definitely the worst RLS case he has encountered and doesn't know what else to do to help me.

Marti,
Dayton, Ohio

Medical Reply

First of all, it would be helpful to know the dose of Mirapex that your are taking.  You may need a higher dose taken regularly up to 3 times per day.  Neurontin may be helpful, but for severe RLS, larger doses are needed and this very often results in side effects (such as sleepiness).
 
Using several tablets of Vicodin and Darvocet per day is not recommended as they contain acetaminophen (Tylenol) which does not help RLS but potentially (very small risk, but can be avoided) can cause trouble.  For severe RLS (such as you are describing), methadone may be a better choice. 
 
Methadone can be taken starting at 5 mg up to three times per day.  This can be increased if necessary.  Ultram (tramadol, a non-narcotic pain killer) may be alternated with methadone to help avoid any concerns about tolerance/addiction.
 
It is quite likely that your fibromyalgia and CFIDS may be due to poor sleep and fatigue caused by your RLS. 

A Reply from Marti

Sent: Wednesday, April 02, 2003 4:40 AM

Subject: RE: Help
 
I appreciate your quick response.  I plan on taking our correspondence to my family doctor.  She has always been a tremendous help and very receptive to the latest medical treatments. 
 
The Mirapex is 1 mg. and the Neurontin 300 mg.  I take one of each at bedtime.  Sometimes with the Mirapex I seem to experience a slight augmentation and then back it down to 1/2 a tab at night for a while.  Since I started the Mirapex a couple of years ago, I don't seem to be able to go a night without it but at the same time it doesn't give me the relief I need and sometimes I think it makes me worse.  It's like a catch 22.  The Neurologist put me on the Mirapex but never wanted to raise the dosages.  He basically told me the Mirapex, Neurontin, and Sinemet at the doses he prescribed was my only hope.  He kept pushing the Sinemet and didn't seem to understand when I told him it actually made my legs start hurting during the daytime to where I couldn't even sit at the computer and work.  I read about augmentation myself during research. 
 
I also take Tylenol #3 or Darvocet's PRN (never both at the same time.  Taking both Tylenol and Darvocet the other night was a one time thing out of sheer desperation).   The doctor has never prescribed Vicodin for RLS as we try to keep it at Tylenol #3 or Darvocet N-100.  I have been prescribed Vicodin after a root canal or surgery and during these times my legs aren't a problem.  I just never asked for Vicodin for the legs. 

I don't want to get addicted to anything.  I have a deep fear of addiction.  This is why I ask my doctor continually to alternate my pain meds.  I also have a fear of reaching a place where no pain meds will work when needed.  After my hysterectomy I was on a Demerol drip and they couldn't seem to get my pain under control.  It was horrible and I am afraid it was because of the pain medicine I take on a nightly basis.

 
My family doctor also gives me Xanax .5 mg to take as needed but I try not to take this too often unless I really need too.  It only provides minimal relief anyway.  I was also wondering about the Labetalol and if this is compatible for a RLS patient.  I use to be on Calan for high BP and palpitations but an endocrinologist switched me to Labetalol 100 mg. BID after an episode of Atrial Fibrillation a couple of years ago.
 
Please feel free to send any other advise you may have for my family doctor.  After all, she is the only one who stands by me and keeps on treating me for the RLS when everyone else tends to give up on me.  Please advise to which meds you feel I should stay on or try along with the doses and I will forward to my doctor.
 
One last note of interest.  My endocrinologist gave me samples of Dostinex a couple of years ago and it seemed to work very well.  He then gave me a prescription for it but my insurance wouldn't pay for it and the script cost over $100, which I could in no way afford.  He has also tried Trazadone but it definitely made my legs worse.  He found this hard to believe.  This is what I continually face . . .  this or that does or doesn't work and I think the specialists gets frustrated in dealing with me. 

I would like nothing more than to never have to take a pill again and crawl into bed and simply go to sleep like normal people do but that doesn't seem to be the hand that was dealt me.   Who knows, maybe someday we will discover the perfect cure for this "torturous" condition.

 
With deep appreciation,
Marti

Medical Reply

Dostinex (which is used extensively in Britain as it is much cheaper there) would be the perfect choice if not for the expense.  You might still try higher doses of Mirapex to see if you still get reverse effects.

 
It does sound as if my previous recommendations of alternating methadone and Ultram would be best.  Codiene and Darvocet are very poor RLS drugs compared to Vicodin and especially, methadone.  There is almost no chance of getting addicted or tolerant to methadone if taken at the correct dose (just enough to relieve symptoms) and alternate it with Ultram.

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