Patient letters on RLS symptoms and remedies- Page 53


Kicking RLS/PLMD Patient

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



Sent: Monday, May 10, 2004 4:32 PM
Subject: Medications for severe RLS and eliminate salt?
I have been taking Mirapex for over a year and slowing increasing the dosage. I am  now taking 0.5mg 3 times daily . I am not tolerating this very well.  I also take one Hydrocodone and one Temazepam 30mg at bedtime. . When I travel I need more Hydrocodone . I am afraid this may become a problem.

My question is, if I can't tolerate more Mirapex ,where do I go now?   I have very severe RLS.   It has altered my life.  I have it 24/7 now.  I am 64 year old female .  I even downloaded a book on my computer that said they had the cure. Eliminate salt.  I haven't tried that one yet. It will be very hard to cut all salt .

I read all of the letters written to you and am so grateful you answer them. I have found it most helpful.


A Medical Reply

First of all, as long as you do not have high blood pressure or problems with congestive heart failure, do not worry about salt.  There is absolutely no medical evidence that salt in any way affects RLS.
Severe RLS can be tough to treat.  Mirapex and Requip may not work as well as they do for less severe disease.  You may want to switch to Requip as sometimes one dopamine agonist may work better than another with less side effects.  It is certainly worth a trial to see how you do on Requip.
Neurontin (or several of the other anti-seizure medications such as Topamax, Gabitril, Keppra) may be added to your RLS regimen and be quite helpful.
Pain killer medications are often the mainstay of treatment for severe RLS.  I will often change from Vicodin (hydrocodone) to methadone as this eliminates the unnecessary Tylenol (acetaminophen) component and is more effective and long lasting (a single dose may last 8 or more hours).  In an effort to avoid tolerance/addiction I will usually alternate the narcotic pain killer with Ultram (tramadol).

Sent: Monday, May 10, 2004 6:05 PM
Subject: New RLS prescription for Stalevo?
I don't always read all the RLS letters and responses, but I haven't seen Stalevo as a recommended medication.
I have had RLS for years, but not extreme pain, been kept under control with Sinemet, and Klonopin in the evening for sleep.  The Sinemet had begun wearing off, and it was time for a revisit to the neurologist.
He has changed me over to Stalevo.   Everything I am seeing on the internet are directly involving this medication with Parkinson's.   I have not been diagnosed with Parkinson's.  In the descriptions of the drug it is answering the "wearing off" of Sinemet, and some of the other issues.   
However, should I assume and be checked out for beginnings of Parkinson's disease, or has this been a recommended prescription for RLS that I have missed seeing.
Curious.  Don't want to take something without a second opinion.

A Medical Reply

The reason that you have not seen any information about Stalevo and RLS is that this is a drug that is specific for Parkinson's disease and should not be taken for RLS.  Stalevo is a combination of Sinemet and entacapone (Comtan).  Entacapone is an enzyme inhibitor (of COMT) and its only role is to help Parkinson's disease patients who have the wearing off effect (when the Sinemet dose gets metabolized too quickly by COMT) of Sinemet.
Sinemet is used minimally for RLS as it causes worsening of RLS in over 85% of patients taking this drug.  Therefore, there is no need for a more powerful form of Sinemet that may only have a better chance of worsening RLS (as in your case). 
I doubt you need to be checked for Parkinson's disease (unless your doctor has not told you that he suspects you have some Parkinson's disease like symptoms), but rather that you doctor is not aware of the correct Parkinson's disease drugs used for RLS.
Mirapex or Requip (2 other Parkinson's disease drugs) are much better and safer RLS drugs and should be used instead of any form of Sinemet.  With the correct dose of one of those drugs it is likely that you would not even need Klonopin (clonazepam), which can be a very addictive drug.  Klonopin also has a very long half-life and will very often cause daytime sleepiness. If you do need something for sleep, Ambien is much preferred.

Sent: Tuesday, May 11, 2004 11:26 AM
Subject: Sudden relief!

I have been suffering from RLS for about 15 years. I have been on a variety of medications. Neurontin and Klonopin got me through the last two years. By January of this year, they stopped working. I have tried Mirapex and Requip with no luck. They exacerbated the symptoms. I went to the Cleveland Clinic last week to have an evaluation of my medications (I'm on a lot of others for other medical problems). I'm seeing my neurologist this week.

Can RLS just subside on it's own after having had it 24/7 for the past few months? I may be talking too early, but I've slept the past two nights, about 10 hours each night. I can't believe it. I don't have the RLS during the daytime hours either. Right now, I'm only on Klonopin, .5 mg, 3 times daily.

What are your thoughts about sudden changes??

A Medical Reply

Anything is possible.  It is an uncommon event for severe RLS to suddenly go away, but it can happen.  How long that will persist is anybody's guess.
Be careful with Klonopin as it can become addictive especially if taken every day.  If your RLS is a problem at night, why do you take the Klonopin during the daytime?

A  Reply from Sheryl

Sent: Tuesday, May 11, 2004 7:24 PM
Subject: Sudden relief!

Thanks for your quick response. I've had only a little of the RLS this afternoon but tonight, it's gone so far. I can't believe it.

You had a question about taking the Klonopin during the daytime. I originally started it for anxiety, from my psychiatrist. Then my neurologist increased the dosage. At one point this year, he had me on 7 a day of the .5 mg. Now, I take one in the morning, one mid-afternoon to stave off the RLS and one or two at night. I wasn't aware of the addictive aspect until I got on the internet. 

Should I be talking to my doctors more about this? I've been on Klonopin at least two years with no break. I cut back from the 6-7 overnight. I started to have less RLS, also, about that time. Any connection?

Thank you, again.

A Medical Reply

Actually, you should have worsened your RLS with cutting down on your Klonopin, so that makes the whole thing even more mysterious.
Some patients can take Klonopin for many years (20 or more) before getting tolerance and addiction and there are others who will never get this problem.  It does however, happen to most which is why I add the caution about taking this drug.
Klonopin should be weaned off slowly.  If you needed it for anxiety, you might need to take another type of anxiety medication (usually the SSRI's, but Wellbutrin, Remeron and Serzone are better for RLS sufferers) before getting off the Klonopin or your anxiety problem may become a problem again.

Sent: Friday, May 14, 2004 8:10 AM
Subject: Neurontin for RLS?

I had trouble taking Mirapex and Requip because of sleep loss.   Also, they irritated my stomach and urinary tract.  I was often up at night and couldn't sleep.  Taking a Percocet helped a little but I never really felt like myself and was often tired during the day.  After three years of this I tried Neurontin and Ultram. 

The Neurontin works much better. I feel ten years younger.  I actually sleep uninterrupted  for 6 hrs  at night and feel rested during the day. I am taking 1200 mg in the evening.  Is it okay to take it all at once?  I took 300 mg in the am yesterday and felt a little sleepy.  I drive for a living so this is not good.  Also,  I was taking just one Percocet per day and it was sometimes giving me a headache.  Now I have no problems with this. 

But I am worried about taking two types of pain meds together. I don't abuse drugs so is this a problem?   They seem to work well  with each other  in a limited dosage.  One other thing, your Treatment Page says Neurontin often loses effectiveness after a year or two.  In these cases will this drug regain it's effectiveness if the patient stops using it for a period of time?  If so, how long a period might this be?  If not, I am going to be quite sad (if it stops working) since I feel pretty good again after almost three years. 

I sometimes think I would rather have a heart attack and fly away than go back to  the   Parkinson medication. I  was always tired when I was taking them.  And what do you get when you are sleepy during the day?   More RLS!!     


A Medical Reply

There is no problem mixing Percocet (a narcotic pain medication) with Neurontin (an anti-seizure medication which may have some benefits to modulate pain).  They are different classes of drugs that do not interact with each other.
In general, I do not find that Neurontin works as well as Mirapex and Requip for RLS but as with all things in medicine, there are many exceptions.  In your case where Mirapex and Requip cause problems, Neurontin is clearly a much better drug.  We do find that some RLS sufferers may note that the drug loses a degree of potency with time, but this is not universal.
If your RLS occurs only at night then you should take the entire dose of Neurontin about 1-2 hours before your RLS symptoms occur. There would be no benefit to take the Neurontin in the morning if your symptoms occur many hours later.

Sent: Tuesday, May 18, 2004 4:24 PM
Subject: Acupuncture working for RLS!

Two years ago I tried acupuncture and I was was completely cured for a year.  Restless legs occurred and  I  had another acupuncture treatment.  It was successful.  Then it came back again and I had acupuncture for the 3rd time.  On that occasion it didn't work.  I had two good years and I recommend this treatment.  

Mike G.

A Medical Reply

Thanks for your information on acupuncture.  It does help some RLS sufferers, but that unfortunately represents only a minority of RLS patients.

Sent: Friday, May 21, 2004 3:48 AM
Subject: Benadryl and PLMD?

I have PLMS but no symptoms of RLS.  I am currently on Neurontin 800 mg and Klonopin 2 mg.  I recently noted that your site had strong recommendations against using  Benadryl and wonder why this is so, other that it being a antihistamine.  Are the recommendations against Benadryl just for RLS or do they apply to PLMS also.  I was taking Benadryl routinely before I saw the alert card on your site and it did not seem to make my condition worse (as far as I can tell since my bed partner is usually out of town).  It comes in handy when taking my nap each day.

I did notice that some peripheral neuropathy I was experiencing in the soles of my feet went away for several weeks after not taking Benadryl.  But then it returned.  PLMS is usually idiopathic but sometimes presents with peripheral neuropathy.

I do have allergies and work around a lot of poison ivy in the yard so would like some type of antihistamine that also promotes sleep.

Any advice would be appreciated,
Steve in St. Louis

A Medical Reply

Most all of the sedating antihistamines worsen RLS (usually markedly) but its effects on PLMD are less well studied and known (in part because patients such as yourself cannot report worsening PLMD unless studied in the lab or your bed partner reports worsening).  It is quite likely that PLMD is worsened by Benadryl, but if you are not experiencing daytime sleepiness or fatigue then the PLMD is probably not causing clinical problems.
In general, even for patients without RLS/PLMD, we suggest the non-sedating antihistamines (Claritin OTC, Allegra and Clarinex by prescription) as they do not cause drowsiness and usually do not worsen RLS/PLMD.

Sent: Sunday, May 23, 2004 1:05 PM
Subject: RLS help for severe disease?

I am having very, very severe problems with RLS. I am by nature an alert, intelligent, gregarious person whose life is nevertheless being destroyed by this condition. For me to go 36, 40, 48 hours without sleep is not unusual. My bodily health of course suffers drastically. The inside of my mouth often feels like a disgusting sewer, I imagine from the buildup of the toxins in my body. I become very jumpy, unable to tolerate the company of other people since I feel so much frustration.

It is not melodramatic to say that nights are hell where I sometimes feel like pounding my legs. Sometimes I'll take seven or eight showers a night just for the very temporary relief they offer. I am at my wit's end completely. In the past, I was diagnosed for everything from schizophrenia to depression to anxiety orders - you name it. But a few months ago - after having an accident where I fell down some steps - a friend of mine gave me a dose of hydrocodone. I had never experienced anything more amazing in my life. The restlessness in the legs disappeared, and with it also disappeared the anxiety, depression, irritability - all the general misery I've experienced all my life.

The conclusion now is very, very clear: there is one problem, and one only, from which the rest of the problems derive. When the RLS is eliminated, the level of my efficiency, the height of my mood, the strength of my concentration, my natural gregariousness all comes out - ME, in other words! My doctor has tried various medications, none of which have worked with the exception of one - and that is the hydrocodone. I obviously have a fairly severe case of RLS - and as extreme circumstances demand extreme measures, so the dosage I need of the hydrocodone is what would not usually be called for. I am talking 30 mg. in the evening, before sleeping; very, very occasionally a second 30mg. dose in the middle of the night if the symptoms awaken me and do not allow me to go back to sleep becomes necessary.

Let me emphasize: I am NOT interested in getting "high." I do NOT get any kind of emotional or body high from the hydrocodone; the ONLY thing I get is my sanity back and my life back. I am, however, finding my doctor very frustrating. I think he has very little idea of the seriousness of this condition.

He is a good, caring guy - I would even say, to some extent, a friend -  and I truly believe that if he realized how extreme the situation is, he would adopt measures adequate to handle it. He has done blood tests on me - even after the large doses of hydrocodone I administered myself, (which, by the way, I acquired by less than orthodox means), and found no deleterious effects. He has tried many things, but only ONE thing works - the hydrocodone. I am at my wits end. I don't know what to do.

I believe my doctor is too cautious - timid even - and I don't know what to do. I, for one, have the essential equivalent of a PhD....but am absolutely unable to use it due to all the blind alleys I am encountering at every step of the way.


A Medical Reply  

Narcotics work great for RLS but we have to be very careful with them.  If taken properly, they will be safe and effective, however tolerance and addiction can readily occur at higher doses (which includes the dose range that you are taking).  When using high doses of narcotics, methadone may be more effective and long lasting and alternating the narcotic with tramadol may help prevent tolerance/addiction.

Mirapex or Requip work very well often even for severe RLS.  Anti-seizure drugs may also be effective in combination with narcotics and other drugs.

Sent: Sunday, May 23, 2004 1:46 PM
Subject: RLS and drug habits

I am a 40 year old female who has had RLS for at least 25 years.  I used to be able to calm it down with stretching, cal/mag supplements and vitamin E.  After back surgery 1.5 years ago ( a lower laminectomy) my RLS became severe.  I tried Quinine, Amitriptyline and Mirapex with no luck.   Klonopin, 1mg at night was my cure from my General Practioner.

I was then sent to a neurologist and had a sleep study.  I have no apnea, just RLS.  My neurologist was concerned with my Klonopin usage and had me stop taking them.  I was weaned off the drug in only 2 weeks and it was two weeks of living hell and no sleep.  I was then put on 600mg of Neurontin that really worked for me.
5 months later I was involved in a head on collision. My RLS became severe.  I was put on Klonopin for my muscle spasms and RLS ( I was desperate and it worked so well the first time around).  I also took Vicodin for about 2 months and then Ultram 50mg 2x a day for pain.  I then began a working out at my gym, lifting weights and swimming 3 times a day.  My back is much better and I am in  good shape physically.  However, my battle with RLS continues. 
My new neurologist is slowly weaning me off of Klonopin.  I am down to 1 mg at night along with 1200 mg Neurontin and he added Sinemet to the mix which is now giving me the augmentation rebound effect.  I am also off of all pain meds.
I can't get into see my neurologist for another month and my RLS is bad.  When I was on Vicodin or Ultram I did not have RLS, but I was afraid of becoming addicted and I was worried about my liver. Also, as soon as I went off these drugs my RLS really acted up.  I like the Klonopin, but as I have heard it is hard on the liver and is also addictive.  The Neurontin alone is not doing it for me any more.  I sometimes take another 300-600 mg in the middle of the night, in addition to the 1200 mg if I can't sleep due to RLS.
What do you suggest I do about my drug use for severe RLS? 

A Medical Reply

Klonopin can be very addictive and with time tolerance will also develop in most.  That is the reason that we do not like patients to be on this drug long term.  Sinemet should be avoided for severe RLS as you have already found out.
Quinine and amitriptyline have no role in RLS.  If Mirapex did not work (were you on an adequate dose?) then perhaps Requip may be helpful.  If Requip does not help, then a combination of Neurontin with alternating Vicodin and Ultram should avoid addiction and tolerance problems and keep you RLS free.  Liver problems are not associated with Klonopin, narcotics or Ultram.

Sent: Monday, May 24, 2004 10:33 AM
Subject: Treatment for my RLS?
Until a few weeks ago, I had no idea this condition existed.  I only knew I was not totally crazy.  I am a 58 year old woman, and suspect I have had this condition for quite awhile.  For years I had  bouts of extremely uncomfortable, itching sensations in one or both arms.  Doctors either thought I had a nervous condition, or was simply overreacting to seasonal allergies.  Nothing helped.  There were also times when my legs felt terribly "achy and heavy."  I am a teacher, and spend most days on my feet. 
About a month ago, my arms began aching whenever I tried to sit and rest, or when I went to bed at night.  These feelings then developed in my legs and eventually in my back.  My doctor ordered blood work and found no abnormalities. For years,  I have also had pains in the center of my chest and in my left arm for no apparent reason.  Were it my heart I would have been dead long ago.  Nonetheless, my physician has ordered tests to rule out heart problems. 
If I get four hours of sleep a night I am lucky.  I have reached the point where I hate to see darkness approach, because with it comes what I perceive to be pain.  Much of the literature I have read suggests that patients do not consider these feelings to be pain, but with me, that is not the case.  My doctor is not one to order pain killers lightly.  He will order these medications only as a last resort. 
I am on Prozac and Prevacid twice a day.  What would you suggest?

A Medical Reply

Mirapex or Requip should be considered immediately and will likely take care of your problem.  If your doctor is not comfortable prescribing one of these medications then demand a referral to a doctor who will.

Sent: Tuesday, May 25, 2004 8:23 AM
Subject: Is there a link between the menopause & RLS?
I have had occasional bouts of RLS late evenings and at night which have kept me awake for maybe an hour or more.  It is hard to describe the sensation to anyone so that they understand.  My GP had not heard of anything like it.
I have heard that there may be a link with hormonal changes during menopause and therefore wonder if I should talk to my GP (again!) about trying stopping or increasing my HRT dosage.
Has there been any research on such a link?  Thank you for any suggestions you can make.
Best wishes,

A Medical Reply

There is no research on the effect of hormones on RLS but many RLS sufferers have reported getting better or worse with hormonal changes.  The only way you can find out which may help or worsen your RLS would be trial and error.

Sent: Tuesday, May 25, 2004 10:33 AM
Subject: Help for worsened RLS?

I have had RLS since I was a child.  About 4 months ago I had surgery on my knee (cleanout scar tissue and check for infection from previous surgery 2 years ago).  I went back into the hospital a week after this surgery with staph infection.  (Like I did with the surgery/infection two years ago)  They found 2 infections: one was smoldering from the surgery 2 years ago and a new one from present surgery.  They put in a port in my chest and gave me antibiotic infusions for 6 weeks.  

Now, what I am getting at is I not only have RLS, but severe pain with it just in my left leg, the one with the surgeries.  My orthopedic doctor says to stand with my legs way back behind me and lean against a counter and that always gets rid of RLS.  It doesn't me. I took Ultram for kidney stones and discovered it helped with the RLS and pain.  I can't believe how I slept so much after taking Ultram and, of course, no pain in my legs and hips.  

I am wondering if the surgery/trauma may have caused the RLS and pain to get much worse now?  When I was in the hospital and awhile after I was out the doctor prescribed  Narco (hydrocodone) and that helped also.  But that was strictly for pain.

Thank you for your internet site.  It was very informative.


A Medical Reply

Trauma to the body (which of course includes surgery) is a very common trigger for worsening RLS.  Pain medications (narcotics such as Narco and the non-narcotic Ultram) work great for relieving RLS as you have already found out.
Mirapex or Requip would probably work very well for your daily RLS.  The stretching exercise helps temporarily control mild RLS only.  You can still use the pain medications for breakthrough RLS that is not controlled by Mirapex or Requip.
Speak to your doctor about getting this therapy as soon as possible.

Sent: Friday, May 28, 2004 4:42 AM
Subject: RLS worse with stress?

I was diagnosed with RLS/PLMD two years ago.  The condition is most severe at night more so than during the day.   I have been through a combination of formulas with Carbidopa/LevoDopa as my maintenance drug.  Has this condition known to be worsened by high anxiety?  If so, should the patient be treated for anxiety rather than RLS?

Chris B.

A Medical Reply

Stress can make any existing condition worse (for example even back pain will be worse with stress).  Treating the stress may help a little or a lot.  It varies with every person and of course depends upon the amount of stress and how much the condition is worsened by the stress.  You can't ever know if treating stress will be all that helpful until after you treat it.
The Sinemet (Carbidopa/LevoDopa) that you are taking most often worsens RLS/PLMD (over 90% of cases).  You should speak to your doctor about changing to Mirapex or Requip which may manage the problem much better.

Sent: Friday, May 28, 2004 7:37 AM
Subject: RLS
I am a 67 year old male and have suffered from RLS for more than 60 of those years.  RLS stayed with me until I finished HS and enlisted in the US Navy.  I had only isolated attacks during the next 30-40 years until recently when it returned with a vengeance and now includes my arms and shoulders.  

This time around I am also suffering from chronic back pain and until I have surgery I have been prescribed Vicodin.  What a surprise to find that a 10 mg Vicodin tablet approximately one hour before bedtime gives me almost complete relief from RLS.  I can sometimes feel the RLS trying to work but I am able to ignore it and it no longer disturbs my sleep.  With the doctor's approval I have adjusted the dosage of the Vicodin to 10mg 3 times daily (one tab every 8 hours). 

So far this is working well for me provided I do not exercise my back in the 6th and 7th hourly periods.  In other words, Vicodin is effective for my back pain for only about 5 hours.  I'm not going to increase the dosage for fear of addiction.  I'll just nap during that period. 

Marion W.
North Fort Myers, FL

A Medical Reply

It is not uncommon for back problems to be the trigger for worsening RLS.  Even with 10 mg of hydrocodone 3 times a day, tolerance/addiction may occur.  You may want to alternate with Ultram (a non-narcotic pain killer) which may help both your back pain and RLS.
You may also want to consider using Mirapex or Requip which can directly treat your RLS and are not a narcotics or addictive drugs.  You can also treat your back pain with anti-inflammatory medications which may help you reduce your need for narcotics.

Sent: Saturday, May 29, 2004 1:39 PM
Subject: Medication interactions?
Thank you for your website it has been a god send for me and I regularly check all the letters to stay informed about this dreadful condition.  I was diagnosed last summer thanks to your website.  My concern is the medications I am on.  I suffer from chronic depression.  I went off of Celexa last June because it was making my RLS much worse.  Since then I have lapsed in to a deep depression. 

My doctor has started me on 150 mg of Wellbutrin and so far so good but it has only been about six days.  The problem is I am absolutely exhausted and can't function.  I am also on 100 mg of Trazadone for sleep and 50 mg of Topamax and one .25 pill of Mirapex.  I have decided to go off of the Topamax because it was prescribed as a mood stabilizer and I don't think it is helping.  I was on 200 mg of Topamax and had the same feeling of exhaustion and slept the whole day away. 

Could it be that that the Topamax and  Mirapex and Wellbutrin be too much for me as they all affect the dopamine in the brain?  Please let me know as I am quite concerned.

Thanks so much,
Sue C.,
Winnipeg, Canada.

A Medical Reply

The common side effect from Topamax is fatigue, so that may be the cause of much of your new complaints.  Wellbutrin may occasionally cause fatigue but that is a less common occurrence.  It is also unlikely that Mirapex is causing your problems.

Sent: Sunday, May 30, 2004 12:26 AM
Subject: RLS better on vacation?
I have had RLS for about 2 years now, and it has gotten worse as time goes by. I tried Sinemet but found out it can have a rebound effect, so I stopped. I am taking a muscle relaxant ( 2 or 3 a night) which seems to help, also a prescription for Klonopin which helps me get to sleep.

But there are nights I feel like chopping my legs off! I recently went to visit my daughter who lives up in northern Manitoba, and found I didn't have any symptoms at all. I was there for a week, and I assume that it has to do with all the minerals in the ground in that area. I wondered if this was worthwhile looking into?

Thanks from Dianne

A Medical Reply

It is very difficult to say why your RLS got better when visiting your daughter.  Many other factors such as change in schedule (even time zone if applicable), change in diet, change in your activities while on vacation, etc. may have been responsible.  That is what makes research into such reports very difficult. 
You should ask your doctor for Mirapex or Requip which work better than Sinemet and do not have the rebound effect.  Pain medications such as narcotics or Ultram can be used on your bad nights to help when necessary (very safe if used intermittently only).

Sent: Wednesday, June 02, 2004 1:50 PM
Subject: Hydrocodone and RLS?
I have been struggling with finding the right medication to treat my RLS for a long time. Finally, my doctor decided to try hydrocodone 5/500 (Vicodin). It has been working well. My problem is that I still have aches and pains in the morning along with stiffness in my joints. Not near as bad as it was before the medication but still enough to cause a problem. 

My guess is that although the RLS is better when I am on hydrocodone there is still activity after the medication wears off (say between 2-4 hours each night). Is there anything that extends the effects of hydrocodone? I was told that 3-4 hours is all it is good for, but I try to sleep at least 6 hours.

Thanks for your help,


A Medical Reply

The stiffness in the morning may have nothing to do with RLS but sounds more like a non-related arthritis problem.  If you have not already tried Mirapex or Requip, they are definitely worth taking as they tend to last up to 8 hours and may help you reduce your need for a narcotic.
If the Parkinson's disease drugs do not help you then adding Neurontin may help potentiate the hydrocodone.  Another approach would be to change to methadone which last much longer (often up to 8 hours or longer) and does not contain acetaminophen (Tylenol) like Vicodin.

Sent: Friday, June 04, 2004 1:55 AM
Subject: RLS and ADD...

I am a 43 year old male who has suffered with RLS for longer than I care to admit.  Until I did a web search, and found out about RLS, I thought I was alone in my suffering.  I never knew that it was as common as it is.     Because of the help I found on the web, I feel the need to share a recent dramatic development in my life.

I was recently diagnosed with ADD. (Adult Attention-Deficit Disorder)  And was prescribed the drug "Strattera."  (Let me state for the record that I am the first person to argue against a "magic" pill to solve one's problems.)  However, the changes in my life since starting drug regimen have been surprisingly dramatic.  My spouse feels as if, after eight years, I am finally "getting my act together."

The reason I am writing, is an odd side effect.  Since being on Strattera I have only had one night where I had a bout of RLS.  I don't know if it is a positive side effect of the drug, or if RLS is a symptom of ADD.  All I do know is that if this information can help someone out there get a good nights sleep... then this e-mail is worth sending.

I am attaching a link to an on line ADD test that I found called the General Adult ADD Symptom Checklist.   For your own benefit, take the test.  You might be surprised to find out that your RLS is not the problem... but a symptom.

Shawn C.

A Medical Reply

Several studies have shown that RLS can be a cause of ADD.  In fact any condition that causes sleep deprivation can easily mimic ADD if the underlying condition is not diagnosed.
It is very unlikely that RLS is a symptoms of ADD but rather as discussed above, ADD may be a result of RLS.  I have no explanation why Strattera should improve RLS as it does not affect the dopamine system (it works on noradrenalin).

Sent: Sunday, June 06, 2004 9:43 AM
Subject: Ambien addiction?

I began taking 5 mg of Ambien at bedtime about 4 years ago to combat the insomnia brought on by Mirapex (.25 mg).  It's worked perfectly but I'm not crazy about doing this.  I have tried several times to get off the Ambien but usually go two nights with almost zero sleep (I just never get sleepy) and finally fall into a sort of exhausted, coma-like sleep on the third night, only to repeat the process.  It's usually at this point I give up.  

Any suggestions would be appreciated.  (I can't recall getting addicted to anything else. . . . . .but this seems like addiction to me.) 

Pat L.

A Medical Reply

This does not sound like an addiction problem but rather a problem with an unwanted side effect of Mirapex.  The question that needs to be answered is would you need Ambien if you did not have insomnia as a side effect of taking Mirapex.
It might be helpful to add a sedating RLS drug such as Neurontin to Mirapex and then see if can both lower the dose of Mirapex (which might reduce the insomnia side effect) and ultimately reduce or eliminate your need for any sleeping pill.

Sent: Wednesday, June 09, 2004 9:36 PM
Subject: Klonopin and PLMD
I take Klonopin once or twice a week for PLMD. My doctor wants me to take this twice a day for anxiety reasons. I think I remember that you suggest a vacation from this so as not to build up a tolerance. If I remember correctly, it was two days off every two weeks, is this correct?



A Medical Reply

Klonopin can be a very addictive drug so care must be taken.  As it has a very long half-life (lasts a long time in your body) a long drug holiday should be taken for this drug (5-7 days). 
A better approach would be to use a drug such as Wellbutrin which is not sedating and takes care of anxiety (and does not worsen RLS/PLMD).
As PLMD occurs every night, I am not sure why you take Klonopin only 1-2 per week.  Usually this drug needs to be taken before the onset of the leg jerks.  There are better PLMD drugs such as Mirapex or Requip.

Sent: Thursday, June 10, 2004 6:44 AM
Subject: RLS and Pergolide

I have read that several people have managed to control their RLS with Pergolide. What is your opinion of this drug? I want to avoid Sinemet (augmentation) and Mirapex brings insomnia, so I want to avoid that drug as well.

Stacey H.

A Medical Reply

Pergolide (Permax) was used extensively until Mirapex and Requip became available.  It does a reasonable job relieving RLS but does have a higher side effect profile (nausea, nasal stuffiness, etc.).  In addition, it has been implicated in heart valve damage which may occur with a low incidence, but must be monitored (with periodic echocardiograms).
You might want to try Requip or even add Neurontin and use a lower dose of Mirapex or Requip.

ISent: Thursday, June 17, 2004 2:12 PM
Subject: Worsening RLS

I've had problems with RLS for several years.  It seemed to begin in relation to a fall that injured my feet and cracked my left calcanus.  I also developed a bone spur on my right heel.  That was 7 years ago and I have had varying amounts of foot pain and RLS ever since.  When my feet are bothering me the RLS is worse.  This has kept me wondering whether this might be a nerve injury problem.  Just standing (especially on a hard surface) is the worst but doing a lot of walking, while not necessarily bothersome at the time, usually has consequences later.

My RLS mostly affects me in the evenings when I'm sitting and winding down from the day.  When I lie down, it seems to resolve in a fairly short period of time so I have been fortunate in that it doesn't seem to disturb my sleep although I am tired much of the time. Over the past two weeks or so it has become pretty much unbearable. 

My feet are also hurting more than they have in quite some time and I often have the "pins and needles" tingling feeling.  I'm now having trouble during most of the day (starting around 9-10 am) if I sit still for more than just a short time.  It has also begun affecting my arms and shoulders. 

I have a tendency to tense up and walk around with my fists clenched.  At times I am so sensitive that my arm rubbing on the desk or a crease in my sock can drive me up the wall. I've addressed the issue with my doctor.  We're doing blood tests for possible iron deficiency, etc. and he has put me on Mirapex (0.125mg 3 times per day).  I've been taking this for approx. a week and am not sure how much it is helping as the RLS seems to be better one day and then worse the next.   The Mirapex does seem to give me problems with insomnia if I take it later than 6 pm so I've cut back to just a morning and late-afternoon dose.

Are there other issues that we should be looking at as a cause or contributing factor for this?  I'm anticipating that my doctor will want to increase my dosage of Mirapex but am a little leery of that since I'm already seeing some side effects.  Thanks for any insight or help that you can provide.

Janet S.,
48 years old,  Idaho

A Medical Reply

t is very common for RLS to be triggered by trauma to the body such as your heel injury.  It is not understood why that happens.  Pain of any sort tends to worsen RLS so it is not surprising that when your foot pain is worse so is your RLS.
If Mirapex is not helping and is causing insomnia perhaps a drug such as Neurontin may be helpful in the evening.

Sent: Thursday, June 17, 2004 8:40 PM
Subject: RLS and heel pain?
I am a 60 year old male. I have had RLS most of my life. It was possibly its worst when I was about 25-30 and affected my knees and my ankles.

I spent many a night thrashing about in bed.  Until about 2 years ago the RLS had subsided but now is back with a vengeance. I am also experiencing heel pain for the first time. Has anyone else had this. It is the back of my heel, where the Achilles tendon attaches and the pain is quite severe. I would love a fix for this problem.

John D.,
Westlake, Ohio

A Medical Reply

RLS can come and go for no good reason as it has done in your case.  Why this happens is most often impossible to figure out.  Your complaints of pain in the heel may be due to RLS or could be a separate problem which may be triggering your RLS (as can any cause of musculo-skeleton pain).
Mirapex or Requip should work well for your RLS.  Neurontin may be added to help your RLS and heel pain.

Sent: Friday, June 18, 2004 2:13 PM
Subject: Requip dose for RLS?
Requip has helped me tremendously, but I'm up to 7 mg per day in order to be effective.  My neurologist is not worried; he says I can go up to 20 mg. per day before I might start having serious side-effects like hallucinations.  Does that sound reasonable?  The stuff isn't cheap, either!
Herb B.
Lexington, SC

A Medical Reply

7 mg per day is a very high dose of Requip for an RLS patient.  Most RLS patients need between .25 to 1.5 mg per day and I have rarely used more than 6 mg per day.  Parkinson's disease patients can go up to 16 mg or more, but they are different.  The side effect profile is however the same for RLS and Parkinson's disease.
Other medications such as pain killers or Neurontin can be added to lower doses of Requip to make it more effective.

Sent: Saturday, June 19, 2004 2:56 AM
Subject: Help! RLS Has Got Me!

Please forgive me if I do not express myself well.  As I write this, I am doing what may be equivalent to every ballet and gymnastic move there is because my legs are driving me insane!

I have been medically treated for RLS for the past 15 years or so and look back "longingly" at the times when I would be symptom free for months at a time.  And when RLS did rear it's ugly head, ONE Sinemet stopped the symptoms within minutes.  I now remember those times and actually cry.

Although I'd been plagued with these horrific symptoms since I was 13, I didn't began  medical treatment until after the birth of my son.  As I said the order for Sinemet was "PRN" and I never experienced side effects from it.

Now, during my pregnancy with my daughter and after her delivery, the symptoms have become my own private hell.  At one point I was taking 2 to 3 Sinemet three times per day and it was quite the quandary because every night I was faced with either a sleepless, maddening night of pacing and crying OR nausea and vomiting. Some choice!  My doctor tried to wean me off Sinemet and on to Requip with no success.  Within the last year he has put me on Mirapex and I was down to two Mirapex in the am, and one at night with ONE Sinemet.  Although I still face the nausea and vomiting every night, I was thrilled to be down to 4 pills a day and no "breakthrough" symptoms.

Just recently, I lost my health insurance and cannot afford my meds out of pocket hence, the email at 5 am.  Being without the RLS meds almost seems like a "cruel and unusual" punishment.  My symptoms are so severe it is as if my legs are making up for all the time I was symptom free and my arms are incorporated in that "catch up!"   My first question is:  Are there any OTC meds or "home remedies" to relieve RLS symptoms?  I'm so desperate, I'd stand on my head shaking rattle snakes if that would just stop the pain and "creepy crawlies!"  Any suggestions would be greatly appreciated.

Also, I may be confused, but 15 years ago, in an effort to find any little piece of information about the disorder, I'd seen RLS used interchangeably with the term "Ekbom's Syndrome."  I'm a bit confused, because it was my understanding that Ekbom's Syndrome was the "bugs crawling" type of sensation experienced by alcoholics going through withdrawal/DT's.  Are these one in the same, or are there clinical differences between the two syndromes?

Ignorant question last; since the most horrible of the symptoms are pain and the "crawling" sensation, I am assuming these are being "relayed" by sensory nerves.  Given this, if those same nerves were surgically severed, loss of some or all (?) sensation in the legs would be the end result?  I am so desperate to be rid of  a disorder which is robbing me of precious time and sleep, that I'd even thought living with no feeling in my legs would be better than this!  Desperate talk, like when I thought going home would stop my labor pains! :)

In all seriousness, not knowing the littlest bit about RLS' cause makes me feel so helpless and out of control.  I feel as if the RLS is running my life and not the other way around, especially now.  One thing that is SO great to know is that there are places such as this online that I can refer to so that I can put things in a different perspective (that is IF my legs will give me a break long enough to concentrate.)

Karen H.

A Medical Reply

There are no OTC (over the counter) medications that have any consistent benefit for RLS.  Most OTC medications have a tendency to make RLS worse.
Dr. Ekbom described RLS in 1944, but did not use his name for this disorder, but rather for the bug crawling disorder (actually a disorder where people think that parasites are crawling on their skin) that occurs with alcohol withdrawal and other delusional disorders.  Many RLS sufferers would rather call the disorder Ekbom's syndrome as it sounds like a more respectable disease, but in fact that is not the correct name for RLS.
The source of the RLS pain may be coming from the brain, spinal cord or peripheral nerves (smaller end nerves).  There is evidence for all the above and this has yet to be understood.  The best therapy for you now would be to somehow get back on Mirapex.  There are other medications that would help, but Mirapex is the best (as you have already found out).

Sent: Saturday, June 19, 2004 2:37 PM
Subject: RLS and rubbing alcohol

I have had restless legs for at least 30 years now. I have never taken any medication for this because I never knew of a doctor that believed this really existed. They look at you like your crazy, at least this has been my experience. I am not a great one for taking drugs, mostly because they always seem to make me sick. I have never associated this with pain, it is basically a lot of jerking the minute I try to fall asleep at night. As I get older, it get more often so now it is at lest 5 times a week that they bother me. And now, it is starting to effect my hips. If my legs aren't jerking my hips are.

I just starting trying quit smoking, and the doctor put me on Wellbutrin. All I could see it do was to proceed to make me sick. After the 4th day I did quit smoking after smoking for 35 years , but after 2 weeks I also had to stop taking it because that was making me sick. I still had the restless legs the whole time, so that didn't help me in that regard, unfortunately.

The only thing that has helped me for quite awhile is, and no I'm not nuts is Rubbing Alcohol. You rub it on the areas that you know are going to bother you, such as ankles or hips or where ever for that matter and it has help me many nights. Try to get the highest percentage you can get. I get 91 per cent that's the highest I have been able to find.

I know this sound unusual, but about a year ago, I was up really late because of the restless legs and I was desperate for sleep. I hit the internet, put in RLS and hit search. I found a website where there were other people like me, thank you because I always thought there must have been something wrong with me, but yes there were others.

Someone said they tried this and it for him and now me. So, I thought I would pass it along. Rubbing Alcohol is pretty cheap and if it can help someone else with this, I will be happy.


Sent: Sunday, June 20, 2004 1:58 AM
Subject: RLS treatment with Mirapex and Ultram?

I have had RLS for many of my 53 years (it was recently confirmed by a sleep study). Many of my family members suffer from it also. I found Vicodin helps control the aching feeling that keeps me awake but it is a narcotic and I have noticed some tolerance over the years. My GP has had me try Quinine, Sinemet, and one or two others but they don't seem to control the aching. I tried Ambien and slept but had some sleepwalking issues.

Over the past 3 to 5 years I have developed excessive daytime dozing. It can happen while I am driving or while I am sitting at my desk grading papers ( I am a teacher) which is a concern. I feel this is due to the fact I am not getting to sleep until 2 am and then have to get up at 7. I'm not getting any REM sleep.

I understand from  reading some of the letters that Mirapex works for RLS but may cause insomnia. I don't need more not sleeping problems.

I would like to get away from the narcotic Vicodin. What regiment would you recommend? Mirapex with Ultram for the aching?

Is there a way to reset a person's biological clock? I can sleep fine as long as it's from 2 to 10. RLS doesn't seem to bother me then.

Any advice you can provide would be greatly appreciated.

John S
Salinas, CA

A Medical Reply

Mirapex with Ultram may in fact be a very good combination.  Mirapex does sometimes cause insomnia but can also cause sleepiness in others.  The aching/pain problems may also respond to Neurontin (which can be used alone or in combination with the other medications), but this drug may also cause increased sleepiness and even next day hangovers especially with higher doses.
If the excessive daytime sleepiness persists once you get adequate sleep times, then a repeat sleep study may be necessary to make sure nothing else is causing that problem.
The biologic clock is set by everything that you do all day from time of meals, activity levels, etc.  But the most important influence is the time that you get up.  This wake time usually starts the biologic clock going (which is why most people have trouble getting to sleep Sunday night after sleeping in on Sunday morning).

Sent: Wednesday, June 23, 2004 4:42 AM
Subject: Advice on Opiates
My GP gave me a prescription for Tylenol 3 to help with my PLMD.  The codeine seems to help better than anything else that I've tried, but the effectiveness wears off in about 5 hours so I wake up in the middle of the night and then have trouble falling back asleep.
Any advice on an opiate with a longer half-life?  I mentioned methadone but it seemed to freak out my doctor; I think that in NY only addicts can get methadone.
Thanks for your help,
Dan M

A Medical Reply

Methadone would be better, but there are many non-narcotic alternative such as Mirapex or Requip or the anticonvulsant drug Neurontin.  No concerns of addiction with these drugs and they generally last throughout the night.

Sent: Thursday, June 24, 2004 7:08 PM
Subject: Severe RLS and medication trouble.

I am a 61-year-old woman.  I have had RLS for 6 years now.  It has progressed quickly and become a lot worse in that time.  I have been to many doctors for this, but am not getting any help now, so I am hoping you might have an idea what I might do next.  I am getting pretty desperate about this.

I have always had insomnia and depression, which I took antidepressants for, then had to stop because of the RLS, so that adds to my problem.  I now take Neurontin for the RLS, 2500 mg daily.  100 mg in the morning, 300 mg after dinner and 2100 before bed.  I have had to increase that, especially in the last several months.  I started out with only 400 mg. daily.  Every time I increase it, it only lasts for 1 to 3 nights, then I have to increase again.  I feel that now I am taking a lot. 

In fact, I just recently discovered that the pain I have had in my mouth (a burning on the roof) is caused by the Neurontin, since I recently stopped it for 2 days, and the pain went away!  I was astounded!  But I have gone back on it because otherwise I would be awake all night with my legs jerking, and I can hardly stand the thought of that.  I have also taken Vicodin and Percocet for years for this when the Neurontin wasn't enough, which would be about every other night.  But the Percocet makes me very depressed and tired the next day, and the Vicodin started making me hyper and not able to sleep as much or as well.

I have tried Mirapex and Requip, which were like a shot of Adrenaline to me.  I have also taken Permax at times, a low dose, but even that usually keeps me awake and makes me very irritable the next day, even if it doesn't keep me awake.  Now the doctor wants to put me on Sinemet, which I feel would do the same thing to me.  I have also heard bad things about it, that it causes the symptoms to become worse after a while.  Yet, it seems like that is the thing all the doctors recommend first.

I have also tried other anti-seizures:  Depakote, which made me tired during the day.  Trileptal, which made me sick, and Topamax, which made me so zombified, I stared at the wall all day!  I also tried Klonopin, which helped my legs, but made me cry all the time.  It was terrible!  I now take Xanax for sleep and it helps, but I know I am addicted, as I can't sleep without it.

Do you have any other ideas for me?  I don't know what it would be, unless there would be some combination of things.  Some nights, I would have to take, besides the Neurontin and Xanax, Vicodin AND Permax to make it stop. 

I would appreciate any help you can give me.  Thank you very much.

Irene O.

A Medical Reply

Do not go on Sinemet as with your severe RLS you may get some relief at first but will almost certainly have marked worsening (augmentation occurs in over 85% of cases) of your problem in a very short time.
You might consider Ultram which is a non-narcotic pain killer.  It usually does not cause depression although in your case you should still watch for this side effect.  This can be added to the Neurontin and may enable you to lower the dose.  Your side effect from Neurontin is strange as it is a treatment for pain problems rather than a cause.
Methadone is a very smooth acting narcotic which may also be helpful.  As your reactions to narcotics have been so varied, it is still worth a try, but start at very low doses for a trial if you wish to see if it works for you.
For sleep, you may consider Ambien which should not contribute to depression like the benzodiazepine usually do.

Sent: Thursday, June 24, 2004 8:15 PM
Subject: RLS related questions
Thank you so much for website,  it has been extremely helpful.  I read your statement - "with the new RLS medications available,  RLS symptoms should be completely controlled."  I just cringe when I read that statement because I am living a miserable life and wondering what can be done to help me live a normal life.  I am a 52 year old male in otherwise excellent health. 

I do know that I have RLS/PLMS.   I have the usual symptoms of the disease;  the legs buzzing and limbs jumping and muscles twinging, muscle throbbing, etc.  I don't seem to have it too badly.  Unfortunately, Mirapex doesn't seem to be the miracle drug for me that it is for other people. Last time I tried to take it I didn't sleep well and it didn't seem to help the PLMS very well, although, I haven't given up on the drug.  

So my doctor and I are working our way through the list of medications that she thinks are viable.  Neurontin seems to work fairly well (helps me to fall asleep I think) but it has begun to wear off.  My questions for you deal with trying to determine if some of the other symptoms I have are related to RLS/PLMS or in fact something totally different.

I will be having a sleep test done in about two weeks (to determine if I have sleep apnea) so hopefully some new information will be discovered.  I am now taking 600 mg of Neurontin around 4:30 pm and 1 Mirapex pill in the morning.  I do know that I am unbelievably tired and achy when I get up in the mornings - after waking 4 - 5 times each night.  I usually wake up at around 5-6 am (stay awake for about an hour usually) and if I don't go back to sleep for another couple of hours (for a total of about 7 hours sleep) I have an enormous amount of pain and discomfort during the day.  The funny thing is I feel like I am sleeping ok except for waking too many times.     

The thing I really want to ask you about is this pain I have during the day - I have pin like pain here and there all over my body throughout the day (imagine poking a needle anywhere on your body, even on the face and sometimes this discomfort is like an itch that will only subside if it is touched) .  One day I counted over 70 instances of such pain - sometimes they are excruciating and other times they are just there.  This pain usually is preceded by a tingling sensation behind my scrotum.  I always know the pain is just around the corner when the tingling scrotum thing happens.  The pain is always worse when my sleep quality and quantity are low.  My question >>> Is this a symptom of RLS/PLMS?

Some further info - I became aware of the scrotum tingling/pin poking pain symptoms and sleep problems in 1996 a few months after a bicycle accident (was knocked out - CAT scan showed everything to be ok).  I took high doses of Nortriptyline (150mg) and Neurontin for many years.  Although I was happy as could be under this treatment I had a very fast pulse and very high BP and had to get off the medicine.  It wasn't until August 2003 that I became aware of the PLMS (daytime leg jumping) and then a few months after that aware of the RLS (daytime also). 

Are these symptoms related to RLS/PLMS?   Have you ever heard of anything like this before? (the pin poking/scrotum thing).  Is it possible that these pain symptoms are the result of many months/years of low quality/quantity sleep??   

I really want to have my life back; at the rate it's going I'm not sure that is ever going to happen.  Sorry this is so long and rambling - I would appreciate any info or treatment advice you could give me and that I could pass along to my neurologist.


A Medical Reply

Your scrotal pain is very unusual for any condition, let alone RLS and may be due to your bicycle accident.  About 20% of RLS patients do have a painful neuropathy, but it is usually in the legs or arms.
You might benefit from pain medication such as methadone (or Vicodin if your doctor is not comfortable with prescribing methadone) alternating with Ultram (a non-narcotic pain killer).  This might control both the RLS and pain problems.

Sent: Friday, June 25, 2004 9:32 PM
Subject: RLS with MS
I am an MS patient, diagnosed in 1999 with relapsing-remitting MS, currently in a relapse (described below FYI). I have had RLS symptoms occasionally in the past, and my deceased father was particularly plagued by RLS so I came by it naturally. This affliction seems to be hitting me with a vengeance during this relapse. I cannot sit still. The sensations are maddening and include involvement with my arms. Even my back feels creepy-crawly so I constantly feel like I need to stretch. I need rest more than anything but I'm finding rest impossible.
I have an RX for Neurontin to relieve occasional severe nerve pain, but I haven't had to take it lately. I am now taking it to relieve itching on the right side of my head that is not relieved by creams, scratching, etc. - and since it's one-sided I assume it's part of the MS relapse. The Neurontin is working fairly well - not great - but I have been conservative about dosage. 300 mg a day.
Now I'm thinking I should up the dosage of Neurontin and see if I can relieve this RLS somewhat. What is the best way to go about ramping up my dosage? I am starting to feel desperate for rest.
Just wondering, is RLS more common or prevalent in persons with MS? What about auto-immune disorders in general?
Thank you so much for your time and attention.

A Medical Reply

There is no relationship between RLS and MS, just an unfortunate coincidence of one common disease (RLS) occurring in someone with an much less common disorder.  The same is true for most auto-immune disorders except that there may be some connection (small, though) with rheumatoid arthritis.
Increasing the Neurontin may be helpful for your RLS so  speak to your doctor about slowly increasing the dose.  There is no set formula, but generally increasing the dose by 100 mg at a time may be best.

Sent: Saturday, June 26, 2004 10:19 AM
Subject: RLS and compounds with aspirin and Tylenol

I have had RLS for 15years and it is not always in my legs it can be in my arms also. I only having problems at night or later in the evening when i have to sit for long periods of time. I have tried all the meds you have suggested and what works best for me is two Darvon at 7pm and two at 11pm people should be concerned about the about of aspirin and Tylenol they are putting in their bodies more so than the codeine type drugs. I have been on this dose for 5 years and not needed a increase hope this helps. 


A Medical Reply

We often try to prescribe the "pure" drugs but they often do not come that way except for the more powerful narcotics.  Darvon is one of the exceptions but this works for only mild RLS cases.

Sent: Friday, July 02, 2004 3:30 PM
Subject: RLS and acupuncture?

In reply to the letter from Sheryl (Page 53).  I have had RLS since I was about 8 years old and am now 80.  In 1958 I was transferred from British Columbia to Ontario and for about two months I was not bothered at all by RLS but then it did come back but the two months relief was wonderful. 

I also had acupuncture , done once, by an old practitioner and again for about two or three months I had the most wonderful relief.  Unfortunately this man has long since died and I have tried other acupuncturists with no effect.

Jim K.

A Medical Reply

It may have been just luck that you had relief with acupuncture the first time as it rarely helps.  Or maybe, you had a special acupuncturist who we will likely not find again.

Sent: Friday, July 02, 2004 8:03 PM
Subject: Suddenly worsening symptoms and my doctor's help?
Help!  I'm a 48 year old woman who's been suffering from RLS for 8 years.  In the past I've been prescribed amitriptyline, Neurontin, Sinemet, clonazepam, Permax, Ultram, Mirapex and Requip.  I have severe RLS in my legs and for the past 4 years also in my arms, day and night. I started on Mirapex about 6 years ago and it was a miracle drug for me. 

It totally stopped the symptoms for an entire month at only .125 mg.  Since then I've had to increase it to 1-1.5 mg per day as the symptoms worsened.  10 days ago suddenly all my meds quit me.  I've had bad spells before, but only for a day or two and never this severe.  The electrical current in my arms and legs is vicious.  Sometimes it'll jolt me so hard it nearly takes my leg out from under me. 

I decided to take a 'vacation' from Mirapex after the first bad night and switched to Requip for a day or two.  Still no relief, then back to Permax and no relief there.  The other meds I'd tried in the past did not work well,  so I didn't bother with them again.  What do I do? 

Sinemet is usually my 'backup' when the Mirapex isn't working,  but even at low doses (2  25/100 tabs) has a very bad effect on me.  I've been experiencing depression, panic attacks and tremendous anxiety.  Of course the lack of sleep hasn't helped.

My doctor suggested going back on Mirapex since I've been off it for 10 days,  but it's still not working and she is out of town for a week.  I'm feeling very helpless. Any advice you can give?  The nearest RLS doctor is four hours drive and I'm strongly considering it, but the trip would be excruciating. 

Sorry so lengthy,  but didn't want to leave anything important out. I'm an active ranch wife, in otherwise good health.

Brenda B., 
South Dakota

A Medical Reply

My advice would be to switch to Vicodin (and if that does not help then methadone would be better) which can be taken 3-4 times per day.  After taking that for a month or so, restarting Mirapex at that point at a low dose may be more successful.

Sent: Sunday, July 04, 2004 11:31 AM
Subject: Mirapex and time

I e-mailed you a couple of times a few weeks ago in regard to treatment of RLS. I have a question, now, that I've not been able to find the answer to through the internet: at any particular dosage of Mirapex, how long does it take before one knows if that dosage is going to be effective? At .125 mg and .25 mg, there was no discernible effect. Now I've been at .5 mg for 14 days, and still there's no discernible effect.

My doctor thinks I should keep taking .5 mg for awhile, but certain info I came across on the internet leads me - rightly or wrongly - to infer that I should know, (by now, at 14 days), what .5 mg is going to do. Can you clarify this matter for me? Second question: an oscillating rhythm/dance between Tramadol and Hydrocodone does DEFINITELY control the RLS in EXQUISITE fashion - I sleep peacefully, wake refreshed, with depression gone, etc, etc.

But trying to get my doctor to prescribe Hydrocodone, (and to prescribe it in a sufficient dose - 10 mg is what's really needed, and he won't do more than 5 mg), is like pulling teeth. The oscillation of the two medications of course leaves them both effective and allows for the avoidance of addiction, (which, having already experienced - if you remember from prior e-mails - I do not want to experience again).

But I am having a very difficult time with my doctor. It's as if he's phobic about this - and he's this way with all patients along this line, not just with me. He says there are "other medications" we can try - to alternate with the Tramadol, (which I DID begin developing tolerance to, so I need to alternate). But my doctor hedges, and won't specify what these "other medications" are, (Klonopin was tried some time ago, and rebound was an immediate problem, so we dumped that; Neurontin worsened the RLS radically, his "other medications" can't be those).

What could his "other medications" be?  Any ideas? Truth is, I'm becoming impatient with the doctor I'm seeing for this, since it seems clear to me, now, that opioids are effective and quite safe when properly used, and I feel like he's being basically stubborn and not quite fully rational. I may have to seek another doctor - but right now, this depends somewhat on the answer to the mystery of my doctor's "other medications."  Could he really have something both possible and good in mind?...or is he simply looking for ways to avoid prescribing narcotics, no matter how carefully crafted the treatment plan is? (Your reflections on this matter could help me figure this out, so I could know if I need to more seriously contemplate finding another doctor).

Thank you!
Dan H.

A Medical Reply 

Any given effective dose of Mirapex will be effective immediately.  We often wait about 3 days to increase the dose but this is only to prevent side effects from occurring by letting the body adapt to the possible negative reactions to Mirapex.  Normally, I will have the patient increase the dose every 3 days until the lowest effective dose is achieved.
I cannot say why your doctor does not want to alternate Ultram and Vicodin but it is likely that your guess is as good as mine.  There are few other drugs that I am aware of that would be effective for RLS as severe as yours.
It may be time to consider finding a new doctor who is more willing to treat your RLS effectively.

Sent: Friday, July 09, 2004 5:22 PM
Subject: RLS and Mirapex?

I was diagnosed with RLS two years ago and am taking Mirapex to relieve my symptoms.  In the last 3 months I've noticed other symptoms that may or may not be related to RLS.  They are pain and numbness in the lower arms and legs, very sore feet, weak knees, weakness in the hands, sore lower back and a feeling of coldness in the extremities.  Can you suggest what this might be and if it is related to RLS. 

Thank you. 

A Medical Reply

It does not sound directly related to RLS but one can never be completely sure.  Some (about 20%) of RLS patients develop a painful neuropathy which usually occurs in the legs (sometimes in the arms also).  It would be more unusual to blame the weakness, sore feet, knees and back on the RLS.  The other sensory changes (cold, numbness) can be associated with a neuropathy but are less common findings.
It is also unusual for all the symptoms to suddenly occur only 3 months ago if they are due to RLS.  They should have been developing slowly over the past 2 years.

Sent: Saturday, July 10, 2004 8:35 PM
Subject: RLS in the back
Hi my Name is Brenda I'm 22 yrs old I've suffered from RLS my whole life. It tends to originate in my lower back, behind my knees, and in my elbows. I read Andi G's letter about her dad and wanted to assure her that her dad is not alone in having it in his back.

A Medical Reply

It is not too uncommon for RLS to occur in the back.

Sent: Monday, July 12, 2004 11:40 AM
Subject: Fibromyalgia and Restless Legs

I have bad Fibromyalgia and did a sleep study in January 04.  I learned from that study that I have restless legs.  I had no awareness of until then.  Can you tell me if the drugs commonly used for fibromyalgia cause RLS?  I have terrible sleep problems and have been on and off Ambien for some time.  I recently tried going off the Ambien but could not stay off because I can not function without sleep.  After returning to 5 mg of Ambien a night I have been experiencing RLS and restless body symptoms worse than before.  Is there a connection to the Ambien?  And if so, any recommendations?

Also, since being on Mirapex I've gained 13 lbs and it all seems to be in my stomach?  Any comments?

Gayle A.,
Richmond, VA

A Medical Reply

I assume that you are referring to PLM's as to what occurred during your sleep study (that you were not aware that you had) as RLS is only present during wake (just as you cannot suffer from a backache while you are sleeping, you must be awake to feel the pain).  PLM's are only a problem if they cause arousals so you would have to know the PLM arousal index (how many PLM arousals per hour) to decide whether or not that is really a problem.
Ambien usually help PLM's and may only help RLS if it provides sleep (just as above, no RLS when asleep).
There are many medications used for fibromyalgia so it is difficult to comment and it would thus be better to look at our section of medications to avoid (as they worsen RLS) on our RLS Treatment Page.
Weight gain is not very common with Mirapex but has been seen in others.
Once on a dopamine agonist, some will notice that reducing or stopping the drug may worsen symptoms.  This only happens in a small but significant percentage of patients.  It would likely be best to stay on a steady effective dose of Mirapex

A Reply from Gayle A.

Sent: Friday, July 23, 2004 8:01 AM
Subject: Re: Fibromyalgia and Restless Legs

As  I mentioned before I never knew I had any leg movement at night until the sleep study.  However, after trying to go off Ambien and even more so after having trying to reduce the number of Mirapex I take from 4 to 2 I do now have really bad restless leg movement (while I'm awake) during the daytime and even worse at night before I go to bed and after I take the one Mirapex.  Any thoughts as to why and what should I do?        

Thanks for any possible advice.  
Gayle A.

A Medical Reply

Once on a dopamine agonist, some will notice that reducing or stopping the drug may worsen symptoms.  This only happens in a small but significant percentage of patients.  It would likely be best to stay on a steady effective dose of Mirapex.

Sent: Tuesday, July 13, 2004 5:22 AM
Subject: Mirapex, sleepiness and RLS?

I have been diagnosed with RLS for about 2 months.  I now take Mirapex .5mg in the evening.  Mirapex puts me to sleep to begin with but then I have problems with waking up early in the morning usually 4-5 am and not being able to go back to sleep. Is this a side effect of Mirapex? What is the solution? 

I am also having problems with dry mouth and heartburn. Will these problems go away with time? Another symptom is breast pain and sensitivity. Is this related to the Mirapex? I have tried Requip but the nausea was horrible.

A Medical Reply

It is likely that Mirapex is responsible for most of your complaints.  You may try lowering the dose to .375 mg or .25 mg and then see if this lower dose still helps your RLS without causing these side effects.  You may also add 1/2 to one tablet of Ultram or Vicodin and see if that makes the lower dose of Requip work better (do this only if the lower dose of Requip is not helping).

Sent: Wednesday, July 14, 2004 2:28 PM
Subject: Getting help for RLS?
I think I've had RLS since I was a teenager but the symptoms were not extremely bothersome until my second pregnancy which was 3 years ago.  I suffered for 9 months during the pregnancy because I couldn't take any drugs to control my unrelenting restless legs.  After the pregnancy was over I took Darvon for the relief of pregnancy pain and also for headaches. 

I found that when i didn't take the Darvon my leg symptoms returned leading to sleepless nights.  I now take Darvon and Ativan.  The Darvon works very well for the pain and the restlessness however I am getting very tired of being treated like a drug addict from the girls in the doctors office when i call for a renewal of my prescription and by the pharmacists.  My condition has gotten worse over the past few months and I have had to increase my medication intake. 

I have chronic pain all day and all night.  Like I said, Darvon works but it is getting more difficult to convince my doctor that I need it and that I'm not a drug addict.  I'd rather be an addict than put up with this pain.  I will not live with this much pain, it is ruining my marriage because my husband just does not understand how much pain I am in all of the time.  When I don't have enough medicine I save what I do have for night time and I suffer during the day. 

My kids suffer when I suffer because I am very short fused when I am in pain. 

I am going to see my doctor in 2 days and am so worried.  I have only a few minutes to state my case and make him realize how miserable I am. 

Any suggestions?  I printed all of the information from this sight so that he can look at it if he so desires.  I think he sympathizes with me but doesn't really know how to treat me.

Does anyone else suffer with both pain and restlessness?  The pain is 24/7, the restlessness and sleeplessness is nighttime only.

Presque Isle, Maine

A Medical Reply

First of all, you should not be concerned that you have only a few minutes to state your case while seeing your doctor.  It is his job to take care of you whether it takes one minute or one hour.  Even though your doctor may be very busy and you feel that you should not take up his valuable time, his (or her) job has not been done until ALL of your problems have been COMPLETELY addressed.  As you are paying for his services (directly or indirectly through your insurance company) you should demand no less than that and if he cannot manage your problems then you should demand a referral to a specialist who can.
There are better ways to treat RLS and the pain that may be associated with it (about 20% of RLS sufferers seem to have this painful neuropathy pain with the urge to move their legs).  Mirapex or Requip works great for the RLS urge to move and has a very good chance to alleviate the pain in addition.  These drugs should be started a the lowest dose and increased slowly as per our RLS Treatment Page.
If the Mirapex or Requip does not completely alleviate your RLS symptoms and pain then Neurontin may be quite helpful.  It can be used alone, but if you are getting some benefit from Mirapex or Requip then just adding it may be a better way to go.  Once these drugs are in place, if you still have residual pain then adding Darvon would be very appropriate.  At this point if your doctor does not prescribe enough Darvon to take care of your problem, then you may need a new doctor.  You can also add Ultram (a non-narcotic pain killer with less addictive potential and stigma) which can be alternated with Darvon or used instead by itself.
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: Friday, July 16, 2004 8:42 AM
Subject: RLS and circulation?
So far three things have helped me.  One is acupuncture which can last up to 10 days but only seems to work if the needles are inserted in the same points each time Aspirin before going to bed often works. Thirdly heat in the form of heated pads or liniments (ones that really heat up) and cover with leg warmers.  I also apply this to my feet which helps. 

All of my ways of getting relief from RLS lead me to believe that the problem is related to a sluggish blood supply.


A Medical Reply

Most all the research done so far does not implicate the circulation system or blood supply as a cause or factor in RLS.


The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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