Patient letters on RLS symptoms and remedies- Page 58

 

Kicking RLS/PLMD Patient


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

 

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Sent: Friday, March 18, 2005 5:48 AM
Subject: PLMD - Husband's leg problem diagnosis


Husband age 57 diagnosed with sleep apnea – moderate, while severe restless limb disorder. He was put on CPAP at level 10 and continues to have PLMD so bad at night that sometimes I can’t sleep. His sleep dr has made no mention of medications which could bring this under control.

Should we go back to him and discuss these continued problems and see about medications like Mirapex and Requip. My father had advanced Parkinson’s when he started Mirapex (which was too advanced by the time this med became available). How does this work on the brain for PLMD?

My husband wakes up in the morning, severe night sweats, fatigued, and at a loss of what to do. He is also having problems with petechia (looks like large blood spots on arm). He takes no blood thinner which could cause this. He is also on no blood pressure medication. Are the night sweats, petechia, fatigue all possibly related to the PLMD?

Jan

Medical Reply

None of the problems that you have mentioned are related to PLMD.

There are 2 types of problems with PLM's. Those that cause arousals and poor sleep for the patient and those that do not (but do bother the bed partner). Unless you know how many arousals the PLM's are causing then you do not know whether or not they should be treated. If it is only bothering you, then we do not treat them.

We are not fully sure how Mirapex and Requip work for PLMD, but it is thought that PLM's are caused by problems with the dopamine system (different than with Parkinson's disease).


Sent: Saturday, March 19, 2005 2:41 PM
Subject: Twitching legs

For several years I have been having symptoms in my legs at night that interfere with sleeping. After being in bed for a while, one or the other of my legs will begin to twitch or jerk involuntarily about once every 40 seconds or so, making it impossible for me to fall asleep. This happens while I am awake, either before falling sleep for the first time or after awakening during the night. I suppose it could be happening while I am asleep as well, but I don't really know.

Sometimes the twitching is preceded by a jittery sensation in the leg, but the sensation is not what bothers me. The twitching can happen in either leg, but seems to happen more often in the right leg. It almost always affects just one leg at a time. I can make the twitching stop either by standing up for 10 minutes or longer, or by repeatedly and vigorously contracting the offending muscle until it is fatigued. Neither of these strategies is conducive to a restful night's sleep!

I finally spoke to my doctor about it, and he says he thinks it is a variant of RLS. He prescribed Mirapex, .125 mg at bedtime. I've been taking it for about a week and have been symptom-free since the first night I took it.

I have several questions:

1. These symptoms don't quite seem to fit the usual description of either RLS or PLMS. It seems most like PLMS except it happens while I am awake. Is this unusual, or do others have the same thing?

2. These symptoms do not generally occur every night - more like 2 to 3 times a week. I read somewhere that Mirapex is most appropriate for people who experience symptoms every night. Is there any problem with taking Mirapex when the symptoms are less frequent than that?

3. I take melatonin (.75 to 1.5 mg) every night as a sleep aid. Does melatonin tend to aggravate these symptoms? And is it all right to take melatonin along with Mirapex?

H.S. (male, age 53, Evanston, IL)

Medical Reply 

Your symptoms fit the description of PLM's.  PLM's can occur while asleep (PLMS) or while awake (PLMW) in which case they usually occur in the late evening while at rest or in bed.  The PLMW problem is quite common.
 
Mirapex is a good choice for PLM's that occur a few times a week. 
 
Melatonin should be fine with Mirapex.  Most studies show that Melatonin only help sleep for problems like jet lag or shift work insomnia.
Sent: Friday, March 25, 2005 11:08 AM
Subject: Cardiac stress test & RLS?

As many others have said, thank you for this site!  I just had a Cardiolyte (thallium?) stress test and on the way home from the hospital I began having RLS/PLMD like crazy!

I was wondering if there is something in the Cardiolyte that could aggravate RLS?  I am due to go back for the second part of the test on Monday, and am a little concerned as that also involves an injection (of something!) and don't wish to go through this again.

I am taking Mirapex and Keppra for my RLS/PLMD....not under good control, but we are working on it.  

Medical Reply 

I have never heard of patients having their RLS worsened by a Thallium or Cardiolyte (these are very similar radioactive tracers) treadmill stress test.  The radioactive tracers (Thallium or Cardiolyte) should not cause your RLS any trouble.
 
It is possible that the exercise done on the test (the treadmill walking) may have been vigorous enough to provoke your RLS.  If that is the case, then pre-treating yourself (take the medication about 1 hour before the test) with a Vicodin tablet (only under supervision of your own physician) may be quite helpful to prevent exacerbation of your RLS symptoms.

Sent: Sunday, March 27, 2005 8:10 AM
Subject: Allergy medications & RLS?
 
With spring arriving I have a need to take medication for allergies.  My doctor has suggested Clarinex or Allegra by prescription or OTC Claritin.  Is one of these a better choice for a person with PLMD?  Do you have any suggestions other than those suggested by my doctor?
 
Thanks,
TJS  

Medical Reply 

Usually, Clarinex, Claritin and Allegra (all of which do not cause drowsiness and likely do not enter into the brain like the older non-prescription antihistamines) should not worsen RLS or PLMD. 
 
Some patients are bothered by the above safer antihistamines anyway so the safest approach would be to use a steroid nasal spray (Flonase, Nasonex, Nasacort, Rhinocort, etc.) which are also very safe and do not have any effect on RLS or PLMD.

Sent: Monday, March 28, 2005 10:16 AM
Subject: Neurontin for RLS causing swelling of ankles?

I have been taking 300 mg. of Neurontin at night for about two years for my restless legs.  I have noticed lately that by the time I get home from work my feet and ankles are quite swollen and are retaining fluid.  As an administrative assistant I don't spend large amounts of time standing during the day so I am perplexed as to why this is happening.  I am also very concerned.  Could this be one of the side effects of Neurontin?  

Medical Reply 

Most likely this has little or nothing to do with the Neurontin.  It has much more to do with you sitting or standing a lot causing gravity to help the fluids in your blood vessels work their way down your leg to your ankles and feet.  Getting older certainly does not help the situation either.
 
Cutting back on fluids and salt should help.  So does keeping your legs elevated or wearing medical grade support stockings.

Sent: Monday, March 28, 2005 10:39 AM
Subject: Periods of improvement in RLS?
 
I have severe RLS 24/7.  I'm on Parkinson's disease drugs for nighttime, Ultram for daytime.  For about the past year I have been having periods of time when my RLS will get either markedly improved for maybe a couple months or a couple weeks and then get worse than usual.  During the improvements, I'm able to reduce my meds a little.  During the times its worse, I have to increase my normal dosages.  

I've looked at everything from what foods I've eaten to physical activity, I can't figure out what would be causing these fluctuations.  I take no extra medications  that might be causing it.  Have you ever seen this before, if so what do you think might be the reason. 

Mary P. 

Medical Reply 

This fluctuation of RLS symptoms is seen in many patients but is not well understood.  It is likely that we will not be able to come up with an explanation as to why it is occurring in you.  Possibilities include diet (can be very hard for some to isolate the problematic substance or food) or stress.  Sometimes stress occurs and you may not even be fully aware of it or how much it may affect you.

Sent: Monday, March 28, 2005 11:58 AM
Subject: Melatonin and RLS?

I am interested in the use of melatonin to treat my insomnia.  I have RLS, and take .750 mg Mirapex each night which works fine for the RLS, but leaves me with only 3 to 5 hours sleep each night, not enough to feel good.  Can melatonin be used in high doses (low doses don't work for me) with RLS? 

I have also just started a protocol of natural hormone replacement (estrogen and progesterone), which may help with the RLS, perhaps letting me decrease or even eliminate the Mirapex. 

 G.P.

Medical Reply  

Melatonin is a good drug to treat insomnia from jet lag or shift work as taking for these problem supplies melatonin at a time when the drug is at low levels in the body.  Using it for regular bedtime insomnia has been much less successful as melatonin levels are naturally high at that time.  Increasing your dose of melatonin should not result in better sleep but could cause side effects.  Ambien would be a much better choice.

Sent: Monday, March 28, 2005 2:54 PM
Subject: Tics and RLS?
 
I'm pretty sure my father had Tourrette's and perhaps only became verbal and motor when drinking.  I've had periods in my life when I felt driven to repeat certain actions, such as flaring my nostrils, playing with my thumbs,  working my fingers a certain way and following the outline of people or things, even while talking to others.  I have pretty well controlled it all. 

However, following a positive sleep lab result for severe chronic Sleep Apnea,  starting the CPAP and continuing to have a partial sleep problem, I was tentatively diagnosed as having RLS and I was put on Klonopin and lo and behold I don't have to turn in at 7 pm every night!  I am wondering if there's any connection between the tics of Tourrette's and RLS (or maybe PLMS, though I'm not positive what that is).  You're doing a great service with this web site.

 
Nan

Medical Reply  

RLS, which is a sensory-motor problem, cannot be diagnosed on a sleep study.  It is diagnosed only based on the patient's complaints.  PLMS (leg kicks at night while asleep) can be diagnosed on a sleep study (and may be used for supportive evidence of RLS).  There is no known relationship between Tourrette's syndrome and RLS.
 
Klonopin should not be used to treat PLMS unless the PLM's are causing lots of arousals.  Klonopin can cause daytime sedation, addiction, tolerance and worsen sleep apnea so the drug should be used very cautiously.  This is a favorite drug of most neurologists for RLS and PLMS, but Mirapex or Requip often work better with less side effects.

Sent: Monday, March 28, 2005 6:20 PM
Subject: RLS and Pregnancy
 
My husband and I (22 female) are considering having another baby, but I was wondering if you knew what I would do or take during pregnancy and after, breastfeeding, because I have RLS and the only thing that keeps it under control, besides walking or stretching is my medication. I am currently on Ultram and Neurontin, and it works great, but I am scared to take it while pregnant.
 
Jamie

Medical Reply 

Pregnancy, breastfeeding and RLS are a very difficult combination.  As you probably are already aware of, RLS most often gets much worse during pregnancy, especially the last trimester.  Almost all the usual RLS drugs should not be used during pregnancy as they can cause problems.
 
If the RLS becomes very severe, most RLS specialist would consider using the narcotic class of medications until delivery time.
 
Check our RLS Treatment Page for more information.

Sent: Tuesday, March 29, 2005 5:39 AM
Subject: PLMD

I'm a 47 year old guy diagnosed with RLS/PLMD 2 years ago and I've had excellent results with Mirapex.  The Mirapex usually controls it well but I do know the symptoms may be worse if I am fatigued, if I have stayed awake more than 20 hours, and in the summer.

My main reason for writing is this - it may sound crazy or made-up to some but I am absolutely serious. I've had about 8-9 episodes of a strange phenomena at bedtime.  Common factors I've identified are that I am always overtired, have been up and actively working for 20+ hours. I take my Mirapex and lay down rather than take it 1 hour before bedtime as usual.

Within 15-20 minutes I "feel" a warm sensation in my head that is followed in about 2 seconds by a sensation that I can only describe as a flash of a high frequency electrical buzz. I swear I can hear it. The buzz lasts only a fraction of a second. This may happen 1-3 times. On the last 4 occasions shortly after the buzz I start to feel a disassociated "floating" feeling - sort of like "the bed-spins" I had after a hard night of partying in college - but without the spinning sensation. I then feel a little nauseous so I think about moving in bed to reposition - but I can't seem to move.

Neither can I talk. What I can do is kind of moan. When I'm stuck in this "limbo" I moan louder and harder and then my wife shakes me and talks to me and the feeling instantly goes away. On the occasions I have this floating thing I may feel it 1 or 2 times in the next 15 minutes. Then I really do fall asleep.

It scares the hell out of my wife. She is convinced I have an underlying seizure disorder . I have no history of that, no family history of that either. The last time it happened was last night and I was aware enough of my "helpless" condition to know that if I moaned long and loud enough she would wake me up and end the "spell".

Any ideas?

Thanks,
Don

Medical Reply 

I am not really sure what it is that you are experiencing.  It may have more to do with being overtired rather than the RLS or Mirapex.  As you already know, it is best to take Mirapex 1-2 hours before going to bed for the best results.
 
It does not sound like seizure activity, but if it persists, you may want to check with your neurologist or sleep doctor.

Sent: Wednesday, March 30, 2005 12:06 AM
Subject: RLS and drug addiction from narcotics?
 
I was just recently diagnosed with RLS.  My treating physician recommended Requip >25 only once a day. This does not seem to be helping, but I also take hydrocodone 7.5/500, 3 times a day. My doctor doesn't seem to think I need the hydrocodone but 2 times a day. I actually need more of something to relieve my pain that is with me all day and all night. I get no sleep and am very tired during the day.

I have been suffering from RLS for 20 years I am 50 now. It is getting worse every day, I have been taking the hydrocodone for about 6 months regularly but I need a larger prescription and my doc  want give it to me for fear I will become addicted. I don't understand if the hydrocodone helps me why she want prescribe it all the time for me to have relief. It has about made me crazy with no sleep for so long.

My husband rubs my legs every night and I hate to ask him after 15 years of asking. Most doctors I have been to never want to talk about my legs hurting, I don't think they understand Can you please give me some suggestions for my pain relief.

Medical Reply 

Speak to your doctor about slowly increasing the dose of Requip.  It sounds as if you have severe RLS and most likely will need a much higher dose of Requip to get relief.
 
You are already on a high dose of Vicodin (hydrocodone) and it does have a very high addictive potential.  The concern is that with addiction also comes tolerance to the drug.  This means that you may need higher and higher doses to get the same relief.  Ultimately, with tolerance, even very high doses may not give relief.
 
There are ways to avoid getting addicted.  Using other drugs such as higher doses of Requip and anti-seizure drugs (like Neurontin) may enable you to keep the dose of your narcotic at a lower, less addicting level.  You may also see if you can benefit from the non-narcotic drug, Ultram.

Sent: Wednesday, March 30, 2005 10:42 PM
Subject: Temazepam long term use?
 
I recently located your website and read the informational treatment pages as well as some letter.  I am short on time before I see my new doctor and hope you have time to advise me before the 7th of April.  I have had RLS for many years I am not sure of the exact onset but I suffered a C-7 fracture and also developed peripheral neuropathy after less than a week on Mevacor (this mostly resolved within 12 months). 

My recollection is that the RLS symptoms began developing sometime after both of these incidents (about 12-13 years ago).  I was monitored at a local sleep lab 2 years ago and diagnosed with RLS. At that time I elected not to be medicated at all for the RLS (there was a feeling that I should be able to control this and that  temazepam was a medication that I should not take every night)  but the lack of sleep took too heavy of a toll on my life. 

Temazepam 30 mg at bed time has been about 70% effective in allowing me to get 6+ hours of sleep a night.  Without it I get about 2  hr. and pace, hurt, wiggle and jerk about.  I feel as though I am doctor shopping for the doctor who will continue to prescribe temazepam so that I can sleep.  I have seen 5-6 different doctors ( internists and GPs) over the last 13 years and find that there is great resistance to long term use of this drug.

This "physician reaction" has made me feel like a drug addict.  I am not, I just can not sleep with out it.  I  am also on Atenolol for High BP and migraine control.  I have many allergies to drugs and seem to suffer side effects to many drugs (am unable to take anything for high cholesterol) and have a reluctance to try something else just to get off temazepam when temazepam has been fairly effective. 

Is it alright to continue on Temazepam indefinitely?  Are there any reasons that the doctors can not prescribe it indefinitely  and why is there so much resistance ? It causes me great stress to think that I will not be able to get the drug that allows me to sleep. I have been off of it for about two years and not getting much sleep until 2 months ago when I finally went to a homeopathic doctor in desperation. She gave me a 3 months supply. Now I must find an internist who will work with me toward an effective long term treatment plan.

I want a doctor who is familiar with and approves of all of my treatments, just one doctor that I can see for every thing. Should I try a different type of drug even though this one seems to be fairly effective?  If I stay on Temazepam what should I use for the drug holidays?  Ambien does not work for me.

Jane

Medical Reply 

The reason that most doctors do not like to prescribe temazepam (Restoril) or other benzodiazepines for over 4 weeks is the concern about addiction/tolerance.  In addition, the PDR (the book that doctors use to look up information on drugs), advising doctors not to prescribe these drugs for over 4 weeks.
 
Many patients can continue taking daily doses of benzodiazepines for years without problems but we do not know who they are beforehand.  So, there is some risk when using this class of drugs daily.  If there is no alternative, then using these drugs cautiously (and possibly taking drug holidays frequently) may prevent problems.
 
In your case, there are better alternatives.  Mirapex or Requip work much better and are not addictive drugs.  Pain killers (the narcotics or Ultram) can be used intermittently and alternated with benzodiazepines if necessary.

Sent: Thursday, March 31, 2005 11:46 AM
Subject: Hydroxyzine and RLS?

I have been suffering from insomnia RLS for years and only Sinequan helped with the insomnia.  I never connected it with RLS for several years, then my doctor told me to stop it, and my insomnia became fierce.  Everything I tried gave me RLS and didn't give much sleep anyway.  Finally Hydroxyzine did and I take 75 mg per night and sleep all night.  However, the RLS was so terrible I was awake virtually all night. 

Then I learned about Sinemet and Mirapex and Neurontin and my doctor has me on all three.  However I am getting something I never had before,  leg jerks during the day. So I'm taking extra Sinemet and Mirapex during the day.  I want to stop them all, and just read on a message board that 4 grams of B-12 daily with folic acid works perfectly.  I want to run out and buy a big bottle.  I am wondering if it will help  given that my RLS is caused by the hydroxyzine.  I would like to stop the Mirapex and Sinemet and find out,  but I am afraid of withdrawal if I do that. 

What would you advise?
Monica L.

Medical Reply 

As you already know, hydroxizine and Sinequan worsen RLS and should be avoided.  The problem you have is likely due to Sinemet which generally worsens RLS (called augmentation and can cause daytime symptoms) and you should speak to your doctor about stopping that drug.  Mirapex usually does not cause that problem.
 
There is no evidence at all that B12 or folic acid helps RLS.  The few patients who seem to benefit from this therapy are likely responding to the "placebo" (sugar pill) effect.

Sent: Saturday, April 02, 2005 12:35 AM
Subject: Neurontin for RLS?

Several months ago you had replied to me via e-mail that you preferred other drugs to Neurontin.  I think it was the Parkinson's drugs you preferred.  Since I take Neurontin, I was wondering what it is that you don't like as much about Neurontin.  I think I read somewhere a while back that it could worsen arthritis. Is this true? 

Also, do you think it could make one's gums recede faster?  Or, is there anything else I should know about it that might be harmful?  I've already looked it up a lot on the computer, so have seen the regular things like making one dizzy or stomach problems.

Thank you so much.
Irene

Medical Reply 

Neurontin is actually a fine drug for RLS.  I like the Parkinson's disease drugs better as they tend to work better for RLS and have less side effects.  Neurontin works well for many RLS sufferers.  It does tend to cause sedation (hangover in the morning or significant daytime sleepiness) in many patients at therapeutic doses which is why I tend not to like this drug as a first line RLS drug.
 
It does not worsen arthritis or make gums recede faster.  If it is helping your RLS and not making your sleepy in the daytime then it is likely a very good drug for your RLS.

Sent: Wednesday, April 06, 2005 3:25 AM
Subject: RLS? or what?
 
I have had symptoms of RLS off and on for about 14 years. Lately I have been experiencing another similar problem. While falling asleep I experience twitching of any extremities. It could be just a single finger on one hand, or even both shoulders may momentarily move up, or one foot may flick to the side, etc.

I don't get the usual strange RLS sensation that has compelled me to move my legs as in the past. The sensation is different, more of an electrical buzz firing the muscles to move. It is totally involuntary which is quite different from the RLS I have experienced. It seems to occur more readily when I am very tired.

I first experienced this kind of thing about 3 years ago while on a fishing trip. I had been taking Gravol for several days for motion sickness when it started to occur. Several weeks later I took Gravol while flying and experienced the same kind of thing again. I attributed the twitching to the Gravol.

Now I'm not sure what to think, as I haven't been taking Gravol since, but the symptoms are coming back with a vengeance. I have recently (~ 1 month ago) started taking sublingual B12, B6, Folic Acid. Also Vitamin E and CoQ10 Enzyme Supplements. I read that the Coq10 can cause involuntary muscle movements in large doses (~600 mg) but I had only been taking 60 mg. I stopped the Coq10 a week ago but to no avail. Could my symptoms be attributed to any of these supplements? These symptoms are robbing me of my sleep and causing depression, irritation, etc. It is now 3:20am and I still can't get to sleep.

Please. Can you suggest something?

Ron H.

Medical Reply 

Gravol (dimenhydrinate, called Dramamine in the USA), is an anti-nausea medication which is also a very potent drug for worsening RLS and PLMD.  It sounds as if your limb jerking may be PLM's which occur very often in RLS patients.  Stopping the Gravol should have helped   take care of the problem.  Since it did not, Mirapex or Requip taken 1-2 hours before bedtime may be helpful.

Sent: Thursday, April 07, 2005 7:39 AM
Subject: RLS and painful feet?
 
My husband has been recently diagnosed with RLS. One of the more serious and painful effects he has is painful feet. He also has burning and itching in his feet.  Is this a common thing among RLS sufferers?    

Judith S.

Medical Reply 

It is not common but does occur in a small percentage of RLS sufferers.  The painful, burning and itching feet may be due to a peripheral neuropathy that is sometimes associated with RLS.  The neuropathy generally does not respond to the usual RLS drugs except for Neurontin or pain killers.

Sent: Friday, April 08, 2005 3:14 PM
Subject: Need help with using narcotics for RLS.
 
I wrote to you several months ago regarding my sever RLS (I have 24/7 symptoms).  At the time I was taking 35-40mg. hydrocodone but since then have become more tolerant to the drug.  Even at the higher doses, hydrocodone was providing only intermittent relief.  After several months of waiting to see a neurologist I finally saw one yesterday. 

His advice was to switch to Mirapex and go off the hydrocodone cold-turkey.  He prescribed 0.125 of Mirapex at bed time and 1/2 tab three times a day.  I had tried Mirapex before and had trouble with somnolence so I assume his reasoning is to titrate up slowly in order to adjust to the sedative properties of Mirapex.  His recommendation was to stay on this regimen for a week and then increase the dose.

 
Problem is, after one day I am going crazy.  The lower dose mitigates the sleepiness but does nothing for the restless leg.  My question is, will this regimen eventually reduce or ease my symptoms?  Am I experiencing hydrocodone withdrawal and if so does this exacerbate the RLS?  After phoning my neurologist today to ask if I could increase the dose of Mirapex, his advice was to, "tough it out."  Unless the symptoms ease in the next few days, I'll be a basket case at the end of the week.  Any help would be greatly appreciated.
 
Marvin

Medical Reply 

It sounds as if you are already in a tough situation.  Being tolerant of a potent narcotic means that you are also likely dependant on it.  Withdrawal is very likely and can be very tough (similar to a heroin addict).  Normally we try to slowly wean off of the narcotic if possible while slowly increasing another RLS drug (such Mirapex).  The goal for now would be to ultimately get completely off the narcotics.
 
If you are having side effects from Mirapex at that low a dose it is very likely that you will have much worse side effects at the more therapeutic doses (which can be ten to twenty times higher than your current dose).  It might be helpful to try Requip which is quite similar but may or may not cause the same sleepiness as a side effect.
 
If you do get off your narcotics and Requip helps, then using tramadol (not a narcotic but dose have some, albeit low, addiction potential) for breakthrough RLS may be helpful.

A Reply from Marvin

Sent: Wednesday, April 13, 2005 7:22 AM
Subject: Question on Neurontin
 
First, an update on my previous letter  to you regarding my withdrawal from hydrocodone.  Day six and it's not as bad as I feared: I didn't have any cold sweats, runny nose, shakes, cramps, etc., just a (so-far) manageable mild craving.  I guess we all respond differently to dependency/withdrawal. 
 
As I  mentioned previously, my neurologist prescribed 0.125 of Mirapex at bed time and 1/2 tab three times a day.  My problem is that even at this low dose I am having problems with sleepiness and fatigue.  During the day I find myself yawning, have an irresistible urge to nap and sometimes fall asleep while reading.  While I am able to get a fairly good nights sleep on a full tab, my RLS returns with a vengeance in the morning.  The 1/2 tab during the day eases the symptoms somewhat but lasts only about 3-4 hours.  Judging from your initial response, increasing the dose will only make the sleepiness worse. 
 
The neurologist stated that if I fail with Mirapex he would recommend Neurontin along with a "stimulant" (according to him this is sometimes used with PD patients).  I am unable to find any information on this treatment on any of the RLS, PD, or Neurontin web sites.  I hope you can address some of my questions (when you have the time): 
 
1.  What is the long-term efficacy of  Neurontin?   In your "Comprehensive Review of Medications used in Treating RLS and PLMD" you state that "the effectiveness of this medication often diminishes after 1-2 years."  Does this mean that the dose will need to be increased after 1-2 years or that it will necessitate a change in medication?
 
2.  From what I can gather, Neurontin works well for patients with mild to moderate RLS and where pain is an issue.  Are you aware of any studies conducted that refer to the treatment of severe RLS with Neurontin?  
 
3.  Somnolence is mentioned as one of the side effects of  Neurontin.  Is there anyway to gauge whether patients who are sensitive to sleepiness on other drugs will respond to Neurontin?
 
4.  Are you aware of any studies conducted regarding the use of stimulants and RLS?  
 
Thanks for you help and encouragement in the past.  Your work is greatly appreciated!
 
Marvin

Medical Reply 

1.  The long term efficacy of Neurontin can be quite variable.  This is only based on clinical experience as there are no really good long term studies in the medical literature.  As RLS tends to worsen with time it can be difficult to tell whether or not the medication is not working as well or whether the RLS is simply worsening and needs more medication to be properly treated.
 
2.  There are no studies using RLS only on severe patients.  Most studies are done on mild to moderate patients as patients usually have to stop all their RLS medications when they start a study and this may be to difficult for patients with severe RLS.
 
3.  Sleepiness from one medication does not mean it will occur with another.  These side effects are quite specific to the actual medication and do not carry over to others.
 
4.  I have never heard of using stimulants in RLS patients and would be quite concerned that they would worsen RLS symptoms.
 
You may want to consider trying Requip as the sleepiness you are experiencing with low dose Mirapex may or may not also occur with Requip.

Sent: Saturday, April 09, 2005 10:52 AM
Subject: RLS and increased heart rate?
 
I'm a 39 year old female with RLS & PLMD.  I have been taking Mirapex successfully for 5 years now.  I can remember times when I had symptoms as a child.  I have noticed that the sensations in my legs have changed a bit from when I first began having nightly problems with them.  I also have noticed an increase in my heart rate and this is what concerns me. 

I know that my RLS is far worse in the two weeks before my period.  During the day my resting heart rate runs about 75 or 80.  When my legs are bothering me it runs 100.  I went to my family doctor and he had me wear a Holter heart monitor for 24 hours, but he didn't think there was too much problem in this.

Is this a common problem?  Should I pursue it further, or not worry about it? 

Medical Reply 

It is very common for women to have an increase in their RLS symptoms during the premenstrual 1-2 weeks.  The increase in RLS symptoms is likely any other stress and can increase your heart rate as a response to the stress.  It should be nothing to worry about.  Improving your RLS symptoms (perhaps by increasing your Mirapex) during your premenstrual weeks might eliminate the increased heart rate.

Sent: Sunday, April 10, 2005 8:40 PM
Subject: RLS & Fibromyalgia

I think of you often when my RLS has me walking the floor all night.  My Neurologist is very kind and willing to help but I'm not sure she is always up to date on RLS and related "stuff,."  I also have fairly severe neuropathy -- up both legs well past the ankle area.  Currently I'm on Requip and Neurontin. I also take a number of other medications for CHF, atrial fibrillation, diabetes, fibromyalgia, and mild depression.  I also use a C-Pap for sleep apnea. Old age is no fun!

Now to my questions:  Is there any connection between RLS and fibromyalgia?  And why do I seem to get more relief from RLS when I take a hot shower and wash my hair than when I just take a hot shower.  Imagination or real?

Thanks for your interest and for sharing your knowledge so generously with all of us.

Eleanor  G.,
84 years old in Glendale,  CA

Medical Reply 

The only relationship between RLS and fibromyalgia is that the sleep deprivation that occurs from RLS may be one of the causes of fibromyalgia.  At times, when the RLS is successfully treated, symptoms of fibromyalgia my disappear.
 
Hot (or cold) showers may help RLS.  No idea why washing your hair should make a difference.

Sent: Monday, April 11, 2005 8:34 AM
Subject: RLS treated with zinc?

I understand that you are the expert on RLS, and thought I would give you some information on my case. I have had RLS for about 9 years and have tried just about every medication available. My case is severe and have had no sleep for weeks at a time. Several months ago, I came up with medication that has allowed me to sleep 5-6 hours a night, which is a luxury..

At about 7 pm, I take a 50 mg Tramadol, a 0.1 mg Clonidine and half Mirapex 0.5 mg. To make it even better, I would repeat the same at 9 pm. During the day, I put  two pellets 30C of Zinc under my tongue. This has proven to be the best for my condition. There is however side effects. An extremely dry mouth, and terrible itching, during the night. I am writing you as, you are aware that people with RLS  love to share information.

I would greatly appreciate your comments, and if you can give me any advice on how to better this condition.

Bernie C.

Medical Reply 

The Mirapex and Tramadol work very well for RLS.  You may want to consider asking your doctor to increase the dose of Mirapex and see if that helps.
 
Clonidine has been known to help RLS but is a very weak and inconsistent drug for RLS.  I have never heard of zinc helping RLS but anything is possible.

Sent: Tuesday, April 12, 2005 11:33 AM
Subject: Iron, magnesium, Vitamin C & magnets may help RLS?

I have had RLS for as long as I can remember, it is in both my legs, both my arms and most recently my neck.  The latest suggestion I have been given by my naturopath  is to take magnesium, vitamin c and iron and place a reasonably strong magnet in the centre of my calf on my worst effected leg.  Are you familiar with this combination?

Kind regards,
Sue

Medical Reply 

Iron should only be taken under a medical doctor's supervision and only if the serum iron levels are decreased.  When low (serum ferritin level less than 45) iron levels are found, iron supplementation may be helpful.
 
There is no evidence that magnesium or Vitamin C helps RLS.  Magnet therapy has absolutely no role in RLS treatment.

Sent: Wednesday, April 13, 2005 12:12 PM
Subject: RLS better or worse with sugar?
 
I've suffered from RLS my entire life, even as a child.  My mother also suffered with this and we had termed it that our legs "were mad".  I'm now 38 and although I've read web pages stating that sugar helps RLS, it makes mine significantly worse, especially at night.  I experimented with it for about two weeks, eating different kinds of foods and found that simple carbohydrates consistently cause my RLS to flare.  By avoiding simple carbohydrates I only suffer about 3 times a month as opposed to chronically with a high simple carbohydrate diet.
 
Some of the posts made note of a family history of heart disease, diabetes, etc. which can all be exacerbated by simple carbohydrates.
 
Lynn

Medical Reply 

I am not sure where you read that sugar helps RLS as all the anecdotal information (letters and speaking to patients) that I have received indicates that sugar and carbohydrates in general make RLS worse.  This is of course similar to your experience.  There is no known reason for this effect.

Sent: Thursday, April 14, 2005 8:57 AM
Subject: RLS & Spinal Stenosis

I have probably been affected by RLS and PLMD for years but was undiagnosed until about two years ago when I developed sleep apnea (again, I probably had it for years without knowing it).  A subsequent sleep study revealed mild apnea associated with periodic limb movements.  The RLS and PLMD seem to be somewhat associated with temperature as well it is worse in the summer.  This makes sense, since for years, my wife has complained that I am a restless sleeper. 

Currently, I am taking a tablet and a half of 0.125 mg Mirapex with 0.5 clonazepam for a little over two years now.  I use CPAP (uncomfortable, but it seems to take the edge off the apnea).

Recently I had an MRI and bone scan which revealed stenosis in the L3, L4 area with a little associated arthritic changes (I had been having chronic low-grade lower back pain for years).  I take ibuprofen to reduce inflammation and Darvocet nightly to aid in reducing the pain in my lower back.  However, I have noticed an increase in my RLS symptoms to the point in which my entire body will suddenly jerk.  Also, my thigh muscles seem to have a constant state of tonus as do the muscles of my hip and buttocks.  I am assuming this is associated with the stenosis which was described by the specialist as mild to moderate.  All in all, it is very difficult for me to get ample rest.  For years I have felt "strung out" each day because of the previously described problems.

I am doing physical therapy exercises to strengthen the muscles of my stomach and lower back, which seem to have helped with the chronic low-grade pain during the day, but I am very restless at night and have great difficulty in falling asleep.  When I awaken at night (usually to urinate) I do not notice the symptoms as much once I have slept a bit.

Is there something more I can do to alleviate some of these symptoms?  It seems the tonus in the muscles is almost more of a problem now than the apnea.

K.N.  

Medical Reply 

It sounds like many of your symptoms are coming from the spinal stenosis and will not be helped by RLS medication.
 
Klonopin (clonazepam) is a drug that is addictive and has a very long half-life which can cause daytime sleepiness.  It also worsens sleep apnea.  You may be better off without this drug and see if increasing your Mirapex may help you eliminate the need for it.

Sent: Monday, April 11, 2005 3:01 AM
Subject: Requip and Klonopin for RLS?

I have had RLS since I was 25.  I am now 77 and symptoms have greatly increased over the years.  At the present time I am taking 1MG of Requip three times a day. Many times I have to keep busy and on my feet to keep the attacks away until it is time for another pill. This is very hard since I am handicapped and on a walker.  I have to get so tired that I simply collapse. 

A lot of times the Requip doesn't take effect  before 3 or 4 hours. So I have to take another to get through the night. My cancer doctor prescribed Klonopin,.5MG , 1-3 pills, to be taken at night.  My question is:  Can I take Requip before bedtime and if no relief sets in within 2-3 hours, can I fill in with Klonopin.  Or should these two medications not be used together?

 
Thank you,
Mary A. L.

Medical Reply 

Klonopin and Requip can be taken together but there may be other alternatives.  You may consider increasing Requip and then see if that helps.  If not, then a sleeping pill may be helpful but Klonopin is a very long acting one (40 hour half-life) and shorter acting sleeping pills such as Ambien, Sonata or Lunesta are better choices (and they are not addicting like Klonopin).
 
It sounds like you are more concerned about your RLS symptoms in the evening while you are still awake.  Klonopin works only if it puts you to sleep.  If you want to stay awake without symptoms then (if increasing Requip does not help) adding a pain killer such as Ultram or a narcotic should be very helpful.

Sent: Friday, April 15, 2005 1:44 PM
Subject: Mirapex for RLS causing problems?
 
I take .50 to .625 .mg of Mirapex 2 hours before bed time for RLS. I have noticed that I have some augmentation.  Occasionally I experience RLS in the afternoon. My doctor suggested I take an additional .25mg early afternoon which seems to help. I am also taking .5 mg/day of Xanax for anxiety.

I am experiencing periodic spells of dizziness and nausea. Is this caused by the interaction of the two drugs or could it be caused just by the Mirapex? Thank you for the information you make available on your web site.  


David C. P.

Medical Reply 

It is likely that the Xanax has no relationship to your problems with dizziness and nausea.  It might be due to Mirapex alone or not related at all to your medications.

Sent: Saturday, April 16, 2005 2:43 PM
Subject: RLS medication Sinemet causing glaucoma?

My family doctor has prescribed Carbidopa/Levodopa 25/100 for my RLS. I have been taking this for about a month. It works!   Yesterday, I was in for my three month check with my eye doctor, I have had "normal tension open angle glaucoma for years treated with eye drops to lower the pressure. The doctor found that my eye pressure has gone way up (32 vs. normally 18). 

I did not think to inform him of the new medicine I was taking for RLS, which I will do Monday.   Do you have any suggestions? Can you refer to me a medication that works for RLS that will not increase my eye pressure?

I am new to your website and it is great!

Jacque S.
Camarillo, CA

Medical Reply 

Glaucoma or worsening of eye pressures is not listed as a side effect of Sinemet (Carbidopa/Levodopa).  It is of course very coincidental that your pressures have risen with taking this medication but I would check with your eye doctor to see if he really thinks that the Sinemet is the cause of the raised pressure.
 
Sinemet however, has other problems.   It initially helps RLS then usually worsens it.  This is called augmentation and rebound.  Mirapex is a much better choice for treating RLS and it does not have glaucoma listed as an adverse reaction.

Sent: Sunday, April 17, 2005 8:36 PM
Subject: Is this RLS and what can I do?
 
I think I have what you call RLS. Every single night, my legs feel as if they lose circulation. I just want to stretch them as if I want them to pop or something. I constantly kick them, rub them, stretch them and get out of bed and do squats and just walk. This only happens at in the evenings and mostly at bed time.

I also have noticed I twitch in my sleep. This wakes me up. The twitching does not seem to come from just my legs, but other parts of my body as well. The twitching has just started recently.

 
I also have a bad back. My 4th and 5th lumbar discs are almost down to nothing or are very bad. I also get pains down my legs and the arches of my feet are very painful as well. My lower back constantly aches. I almost went for surgery for this until my doctor put me on Percocet 5 mg. I take 2 tablets every 6 hours and this was helping my legs also. It still helps my back and legs until bedtime and does not make me drowsy so I can work just fine.

He recently added Ultram, but this seems to do nothing for me. My back is doing ok on the Percocet, but at bedtime, the legs drive me crazy and give me nightmares when trying to sleep. It is driving me NUTS.  Can you give any advice as to what to ask or tell my doctor?

Jeff G.

Medical Reply 

It does sound as if you have RLS (the funny sensations in your legs and the urge to move them) and PLMD (limb jerking movements).
 
Percocet and most narcotics usually help RLS.  Ultram often helps RLS but not as predictably as the narcotics.
 
Ask your doctor to prescribe Mirapex or Requip for your RLS.  If taken correctly (about 1-2 hours before symptoms occur and 1-2 hours before bedtime) these drugs should relieve your RLS symptoms.

Sent: Monday, April 18, 2005 6:01 AM
Subject: Need advice on disability for RLS
 
I have suffered with RLS for 22 years. It began in my first pregnancy shortly after slipping on some stairs and injuring myself.  Although it has flip flopped back and forth over the years in severity I managed to hold down a fulltime job, raise 3 children, 2 of whom had a lot of medical problems. 

However, in the past 5 years it has gotten more constant and severe and I am forced to be off work because it became too difficult for me to hold down a full time job.  It has in the past few years also caused a lot of stress and anxiety due to lack of sleep and inability to function normally. 

I have applied for disability through work at urging from others and I am concerned that RLS will not be recognized as some people still tend to think of it as 'all in the head'.  What is your experience or info if any on patients with RLS receiving disability.  I would appreciate any advice you can pass my way.

Sleepless in Ontario,
Pat B.

Medical Reply 

Obtaining disability due to RLS has been a concern.  This may vary from state to state but you are right that due to the lack of awareness about the disorder it may not be taken very seriously.  What is necessary for any disability is to have a knowledgeable doctor write a supportive letter validating the need for the disability.  This should carry enough weight (if written properly) to help expedite the disability.
 
The other aspect of this problem is that the vast majority of RLS sufferers (I would estimate well over 95%) should be able to avoid the need for disability and lead normal social and work lives if they receive proper medical treatment.  There are many drugs available now that can relieve the symptoms of RLS and allow for full activities including sedentary ones.  Before trying to obtain disability please make sure that you have exhausted all the possible medical treatments as disability should only be the last resort which should be needed by very few RLS patients.

Sent: Saturday, April 23, 2005 1:00 AM
Subject: Sinemet 25/100 plus 25/100 SA cause dizziness?
 
Sinemet 25/100 followed by 25/100 SA at bed tune with 10mg Ambien have been working well for years, However disabling side effects have started at 200pm afternoons of extreme dizziness and loss of equilibrium!
 
What can I do??
 
Donald K.
Chula vista, CA

Medical Reply 

If your RLS is treated properly, you should not need Ambien every night.  The dose of Sinemet that you are taking is borderline for causing augmentation and rebound problems.  The vertigo like dizziness that you have described is not typical of Sinemet as that drug generally causes a light-headed type of dizziness.
 
Mirapex or Requip are better choices for treating your bedtime RLS.  With proper dosing of one of these dopamine agonists you should not even need Ambien to help you sleep.  Hopefully, a change in Sinemet to a dopamine agonist may resolve your dizziness problem.

Sent: Sunday, April 24, 2005 11:16 PM
Subject: Ultram and temazepam?

Thank you so very much for this wonderful site.  I have been using temazepam for sleep and restless legs but really am trying to cut it down.  I am taking about 10 mg. a night and since I was starting to have restless legs again I have started taking Ultram with it.  Hopefully I will not need that after awhile. 

Even at a low dose the Sinemet was starting to make my legs worse earlier in the evening so I cut that out.  Is it safe to combine temazepam with the Ultram?  My doctor prescribed the two so I assume it is. 

Once again thank you for your help,
Linda, San Diego  

Medical Reply 

It is safe to take Ultram and temazepam together.  A better solution would be to take Mirapex or Requip 1-2 hours before bedtime then add the temazepam only when necessary.  That may help you cut down on your two potentially addictive medications.

Sent: Monday, April 25, 2005 9:00 AM
Subject: RLS worse with medications?

Hello.  I am a 39-year-old female, and have recently realized that I have Restless Legs Syndrome.  For several years now, I have woken up multiple times throughout the night, and then have had extreme difficulty getting up in the morning, as I did not feel rested and ready for a new day.  However, the Restless Legs Syndrome bothers me more during the day.  While working at my desk all day, sitting in church, sitting in a meeting, or anytime that I am sitting in one place for any length of time, I almost go absolutely crazy due my restless legs. 

I am wondering if one of the medications I am taking could be the cause of my restless legs.  Because I would prefer to eliminate the medication causing the problem rather than to add another medication to my daily regimen.  I am currently taking the following medications:  (1) Effexor XR – For depression, (2) Zyrtec – For allergies, (3) Flonase Nasal Spray – For allergies, (4) Singulair – For allergies, and (5) Taking allergy shots. 

Are any of these medications know to cause Restless Legs Syndrome?  If so, would tapering off/stopping the use of the medications (after consultation with my doctor) eliminate the Restless Legs Syndrome?  

Twyla H.

Medical Reply 

Effexor XR may worsen RLS.  This does not happen in all RLS patients but most will have some worsening.  The amount of worsening also varies quite a bit and if this medication is necessary for you depression, we do not recommend that it be stopped.  Wellbutrin is the only antidepressant that may actually help RLS and trazodone does not bother RLS.
 
Zyrtec is one of the newer antihistamines but unlike most of its counterparts (Claritin, Clarinex, Allegra) it may cross into the brain and be more likely to cause worsening of RLS.  The only way to know if to go off the drug for a week and see if it makes a difference.  If it does, then change to one of the other newer second generation antihistamines.

Sent: Tuesday, May 03, 2005 7:50 AM
Subject: Only recently found a diagnosis

I have read your site with great interest and some relief. The stories from your other contributors simultaneously fill me with compassion, interest and insight, excellent information and a feeling of camaraderie in that I am not alone. I have had jittery legs since my early 20's (I am 45 now, crikey, how did that happen!!!).

The occasional stretching at night, massage etc seemed to do the trick and I really never thought of it as anything pathological. However, 2 months ago after a nasty bout of flu caught during a trip to the US, during recovery from the virus my symptoms suddenly got much worse, leading to little sleep and the classic night walking/waking. Bruising my legs by hitting them (I was relieved to know this wasn’t just me, as this behavior appears rather psychotic to non- suffers :>)), stretching, massaging, running in the dark along a canal side at 4 in the morning (thank god there's no one around at that time, although the ducks were a little confused), all led me inexorably toward a desperate and somewhat panicky search for explanations.

 I went to my doctor desperately anxious, to be told nothing was wrong and to be prescribed amitriptyline, which made it worse. Then came a search on the net. I quickly found your site and was greatly comforted that an imminent diagnosis of ALS, BSE or other severe and fatal neurological disease was probably not the cause. For that on its own thank you. Interestingly I had taken large amounts of cold remedies containing antihistamine and then, to exacerbate the problem, antihistamine sleep aids as I couldn’t sleep, which somewhat initiated a viscous cycle in the symptoms. In addition, I had taken a course of Losec (a proton pump inhibitor) a week before this, all of which I now find can exacerbate the symptoms. My final confirmation test was to ring my big brother (we were broken up as a family when I was very young, so I don’t know them that well), who informed me that he, and three of my brothers also had symptoms and my mother. Well, this pretty much convinced me of the problem. Interestingly, we also have family hypertension running in the family and I wonder whether disorders in dopamine metabolism might possibly underlie some forms of familial linked hypertension??.

I have started taking iron and have moderated my exercise which was rather intense as I tried to exhaust myself. In the last few days I have experienced a significant drop in the symptoms but am worried about iron supplementation without ferritin monitoring. I am taking 30 mg of amino chelated iron per day before bed. I don’t know if my improvement is a natural remission or due to lifestyle and supplementation with iron. Either way, how do you suggest that I manage iron intake long term, as I am aware that excess iron is problematic in terms of other health risks. It is causing a little constipation and dark stools, but I think that is not too worrying and just excess non-absorbed iron. Any advice would be fab. I really appreciate this site, my heart goes out to those of you that have it much worse than I. Thank you so much for your time.

P.S. I'm trying to delay any dopamine medication for as long as other methods seem to work. I read your comment about chiropractic. Absolutely right, no research in this area. Maybe we should do some, although I think any (non-placebo) neurological rationale for putative effects is tenuous to say the least at the moment.

Dave,
Southern UK

Medical Reply 

 

here is no known link between familial hypertension and disorders of dopamine metabolism.  You are also correct about not taking iron without monitoring both serum iron and ferritin levels.  You should see your doctor and have him or her check these levels.

Most all the medications that you were taking generally worsen RLS except that Losec (Prilosec in the USA) is not known to affect RLS.

 
It sounds as if you may be able to get by without medications for now if you avoid caffeine, drugs that worsen RLS and exercise only moderately.  When your RLS gets worse you should not hesitate to start dopamine agonists.

Sent: Tuesday, May 03, 2005 5:01 PM
Subject: Permax and RLS

I have been looking at your site for a few years and had a question about Permax. First a little history. My RLS was found during a test for sleep apnea, I tried Requip and Mirapex both worked but gave me insomnia. Sinemet was like a miracle until augmentation set in, now they want me on Permax.

My doctor or myself have failed finding any conclusive research linking Permax to hardening of valves in the heart. Is there any new info on this?

 
Randy F.

Medical Reply 

Permax (pergolide) is an ergot alkaloid derived dopamine agonist.  Virtually all the ergot related drugs can cause scaring of the lining of the lung, abdomen, and heart, scaring of lung tissue and heart valve scaring.  There are several studies that have examined this problem (see our website) that have found this to be the case for Permax. 
 
If you are doing a literature search on the internet to find this problem it may be easier to search using the generic name, pergolide.

Sent: Wednesday, May 04, 2005 11:36 PM
Subject: Brain tumor and RLS?
 
I recently had a follow-up MRI after a meningioma was removed from my cerebellum.  Everything was fine, tumor wise.  I noticed after it was removed that my RLS calmed down over a year's time.  I'm pretty sure the tumor was related to my RLS symptoms.  My question is this: Does "non-specific chronic white matter" have anything to do with Restless Legs?  If not, what does it mean? 

Pat

Medical Reply 

It is difficult to say how your tumor is related to your RLS.  It may have been the surgery alone that affected your RLS or just the removal of the tumor alone.  Very hard to say as we do not understand what really causes RLS.
 
Non-specific chronic white matter changes are just what they say.  They are not specific to any known problem and with aging (and if we get an MRI done) most of us may have many of these changes.  They have no relationship with RLS.

Sent: Thursday, May 05, 2005 6:19 PM
Subject: RLS and Acid Reflux

I have been diagnosed with RLS but am not sure it is the correct diagnosis as I don’t really have the need to move my legs due to discomfort.  I do have the tingling/buzzing feelings that some seem to have and I definitely have problems sleeping.  My neurologist who diagnosed me gave me Klonopin (I take ˝ of a 0.5mg pill at night) and I sleep much better with it. 

This seemed to start after I started taking metaclopramide for acid reflux symptoms and it seemed to cause Parkinson's disease symptoms.  Is it possible that RLS could be caused or at least made worse by metaclopramide?  Is it possible that some side effect of my RLS can cause symptoms similar to acid reflux?  I do not have heartburn, I feel bad most afternoons and taking antacids help.

Medical Reply 

The urge to move the legs (with or without uncomfortable sensations) is one of the key components to diagnosing RLS.  Without this urge to move it is very unlikely that you have RLS.
 
Metaclopramide (Reglan) is on our list of drugs that does commonly cause RLS.  Patients with RLS should not take this drug but rather use PPI's (proton pump inhibitors like Prilosec).
 
Care should be taken with Klonopin as it is an addictive drug.  The newer non-benzodiazepine drugs like Ambien and Lunesta may be better choices.

Sent: Thursday, May 05, 2005 6:57 PM
Subject: ALS with RLS?

I am a 66 yr. old male and have had limb onset ALS for five years.  I have had a gradual onset of RLS-like symptoms in the last six months.  RLS-like symptoms are most prominent in my feet with lesser symptoms also in upper legs and lower torso.  Also, toes and balls of feet are often cold. I do not have symptoms in my calves. My calf muscles are severely atrophied due to ALS. 

An ALS neurologist has prescribed Paxil (10 mg daily) and I began this medication two days ago. Treatment is for general anxiety, possibly due to lack of sleep and problems of leg discomfort.  As of today, my ALS neurologist has prescribed Vicodin for pain and sleep disruption. I have not yet taken this medication.  I have not yet discussed RLS with my neurologist as I was not familiar with this syndrome until I read about it today on an ALS message board.  

My questions are these: 

1. Is RLS known where primary symptoms are in the FEET with secondary symptoms in upper legs and lower torso? 

2. Would coldness in toes and soles be associated with RLS or might this be due to some other condition? 

3. Do you recommend that I discontinue Paxil until the RLS-like symptoms can be ruled in or ruled out. 

4. Would the combination of Paxil and Vicodin be appropriate for an RLS patient? 

5. Have you had any experience with ALS and RLS?  

Bill

Medical Reply 

1. At first it was thought that RLS tends to avoid the feet but many RLS patients have their feet involved in addition to the rest of their legs.
 
2. Coldness in the toes, especially if constant, is most likely not associated with RLS but rather a neuropathy or unknown cause.
 
3. Paxil may worsen RLS in a significant number of patients (the percentage is not really known) and if you feel this is the case with you it may be better to switch to Wellbutrin (if the change is not effective then you should go back on Paxil and just treat the RLS if necessary).
 
4. Vicodin and Paxil do not have any interaction.  Vicodin, as does all narcotic painkillers, relieves RLS symptoms very well.
 
5. There is no relationship between ALS and RLS (you are very unlucky and somewhat unique to have both together) so I do not have any experience with the 2 diseases together in the same patient.

Sent: Friday, May 06, 2005 10:38 AM
Subject: Mirapex not helping RLS?
 
My doctor diagnosed me with RLS and started me on Mirapex .25 mg twice a day at bedtime. After 2 weeks it no longer worked. He increased it again another .25 mg. A few weeks later, it stopped working again.  I was up to 1 mg and that didn't help. I was also very fatigued. I called to let his office know the Mirapex stopped working again, but that I was afraid to increase it any higher, so he discontinued the Mirapex. This was about 6 days ago.

For the last 3 days, I have RLS non-stop. Irresistible urge to move the legs, jumping of legs, feet on their own. Horribly uncomfortable I can't take it.  My old neurologist has me on clonazepam at bed which this neurologist kept me on and I also take Baclofen and Keppra for spasticity.

Is there something else that I can take for the RLS? Why didn't the Mirapex work when I was on a high dose? Is the Mirapex what caused the fatigue.

So sorry for the questions, but I can't even sit for 10 minutes and I need to get up and walk.  Please help me again.

Thank you,

Peggy

Medical Reply 

 
Did your RLS symptoms start occurring earlier in the day while on Mirapex?  If so you were likely developing augmentation which occurs in about 15% of patients this drug.  With stopping the drug (when augmentation occurs) RLS symptoms will often worsen.
 
Keppra may help RLS but Baclofen usually does not.
 
You may get fatigue from Mirapex, Keppra or Baclofen.  Only by stopping and starting them can you tell which is causing this problem.'
 
I would suggest a trial of a narcotic (Vicodin or even better would be methadone) or Ultram for your RLS symptoms.  These medications usually help most RLS sufferers.

Sent: Friday, May 06, 2005 12:32 PM
Subject: Mirapex withdrawal?


How does one get off of Mirapex? Because Mirapex (and Requip and Sinemet) causes severe augmentation for me, I need another option, but I can't seem to get off of it! I've managed to reduce it to .125 and am using clonazepam and Ultram with that. But last week, working with my doctor, we upped the Ultram and eliminated the Mirapex and I went through three days of refractory RLS. The Ultram and clonazepam had no effect at all and the RLS was so severe that my legs were actually buckling when I was walking!

My doctor is trying to work with me, but he doesn't know much more than I do. He's never had a patient like me. When I go back to see him next week, I'd like to have something to tell him that might help guide him. Should I reduce it by 1/2 again before I try? Or will I be stuck with these withdrawal symptoms no matter what? I know I'm asking a lot of questions, but I feel so lost. If I have to go through the severe RLS as part of the withdrawal and nothing will help, how long will it last? I am so grateful that you are here to ask. I'm sure you already know, but the help you provide to the people who write you is incredible.

Ann B.

Medical Reply 

There are some patients who get augmentation with the dopamine agonists (Mirapex and Requip) may also get a severe withdrawal response such as you are experiencing. This response was very common with Sinemet but was easy to take care of as you could replace it with one of the dopamine agonists and avoid most of the withdrawal symptoms.

As you clearly should not be taking any dopaminergic drugs we need another plan for you. I would suggest changing Ultram to methadone, 5-10 mg every 8 hours as needed until you are back to normal. At that time you can return to Ultram if possible. Some patients even alternate methadone and Ultram (3-4 days of each drug per week).

You might also consider adding another drug such as Neurontin. It may help both Ultram or methadone so that you can use lower doses of those painkilling drugs. The Neurontin could be started while getting off of Mirapex or after to help get off of methadone (if you feel you want to do that) or lower the dose of your painkillers as noted above.

It may be easier to break the Mirapex .125 mg pills in half and take it for an additional week before stopping the drug completely.


Sent: Friday, May 06, 2005 11:13 AM
Subject: Anti-nausea meds and RLS

I was reading the medicine section of your website today and wanted to share some personal information.  I have suffered from RLS most of my life.  I am 29 year old, and had severe worsening during my three pregnancies.  I have taken many different meds for my RLS.  

I was diagnosed with breast cancer last summer.  I had previously read on your sight that most anti-nausea meds make RLS worse.  I spoke with my pulmonary doctor and he prescribed Ativan for my nausea.  It worked wonders.  I took it all throughout my chemo, and never got sick.  I did not see it listed under your anti-nausea drug section.

I had to take Benadryl for my CT Scan and while receiving Taxol (chemo) and even now while receiving Herceptin weekly.  I take a 10/500 Lortab when they give me the 25mg of Benadryl and it keeps the RLS from starting.  I found this to be very interesting and helpful.  

I would like to say thank you for having this website.  I have found much valuable information on it.  I suffer from RLS, PLMD and insomnia.  I had over 600 leg movements during my sleep study 1 year ago.  I currently take Permax .05x2 and Lunesta (just started that this week).  I also take Lortab and Ultram for post-surgery pain.  However, I did take Lortab during my pregnancy to treat daytime RLS symptoms.

My 5 year old son also has PLMD.  I took him Feb 04 (he was 4 then, turned 5 in Oct.) for a sleep study.  He has always had difficulty falling asleep and has suffered from night terrors and sleep walking.  He has also had behavioral issues from his sleep deprivation and ADHD like symptoms.  He had over 200 leg movements which resulted in sleep disturbances.  The doctor has my son on .05 of Permax nightly and the improvement we have seen in him is tremendous.  They did try 3 months of iron therapy on him, even though his serum ferritin levels were normal, and there was not improvement.

Sincerely,
Beth P.

Medical Reply 

Ativan (lorazepam) is not an anti-nausea drug but rather a benzodiazepine drug (related to Valium).  I have never heard of it being used for nausea prevention but it clearly works for you.  Kytril or Zofran are excellent anti-nausea medications that do not affect RLS at all.  They are however, quite expensive.
 
Lortab (which contains 10 mg of hydrocodone) is a very potent RLS drug that (as in your case) can even relieve RLS symptoms provoked by "bad" antihistamines like Benadryl.
 
Smart of you to have your child checked out for RLS.  Otherwise, he would just be another ADHD child placed on Ritalin or one of the newer ADHD medications.

Sent: Sunday, May 08, 2005 3:08 AM
Subject: Lite salt for RLS

I've had this all my life.  Bothersome when I'm tired or get sleepy like riding in the car as a passenger or in a movie or at night.  I went on a diet a while back and they had me take 1/2 teaspoon of lite salt daily -- I found it took care of my jumpy legs. 

So now when I have symptoms, I dump 1/2 teaspoon lite salt (which has potassium chloride) in a small glass of water, drink it and in minutes, symptoms gone.  I always carry it now and take potassium at night as part of my vitamin regime.  Easy, cheap solution.  Symptoms much better. 

Sue J.
Houston, TX

Sent: Monday, May 09, 2005 10:11 AM
Subject: My husband problems with RLS and heart trouble?
 
My husband, who is 36 years old, has suffered with RLS for about 20 years. Over the last 3 years it has become so bad he can hardly walk anymore, he is in constant pain throughout his body, he suffers from tremors in his arms and trunk as well!
 
In the past he was treated with temazepam, Amitriptyline, Sinemet & cabergoline. Currently he is on diazepam & Effexor. He is lucky to get 2 straight hours of sleep per night, he is now classed as disabled and is unable to work!

Last week he was admitted to hospital with a suspected heart attack, after performing many tests over a period of days they said his Echocardiogram was showing his heart is beating in an abnormal manner, he passed a treadmill test, which he struggled to do, so the cardiologists feel it is his RLS which is effecting his heart as well!

I would gratefully receive any suggestions for medication which could possibly help him & wonder if you have ever came across some-one else who has been effected in a similar way?

 
Deb/35/UK

Medical Reply 

There is no direct way that RLS affects the heart.  Through lack of sleep and increased anxiety, RLS may put some increased stress on an already damaged heart.
 
Effexor often worsens RLS so that may not be the best choice.  Wellbutrin or trazodone are better alternatives which do not make RLS worse.
 
Tramadol or narcotic medication would likely take care of his RLS symptoms and also the pain he is experiencing. Neurontin (gabapentin) is an anticonvulsant drug that may help the pain and RLS and can be combined with the above painkillers.

Sent: Tuesday, May 10, 2005 4:01 PM
Subject: Neurontin not fully helping RLS?
 
Thank you for your time and this fantastic headquarters of RLS information.  I am 33 years old and have had RLS for 8 years and nightly for 3 years.  After many good years on Mirapex I've tried other meds with little success.  Klonopin made me too tired the next day. Mirapex and Requip both hurt my stomach after reaching high dosages.

I'm taking Neurontin at the moment.  300 mg 1 hour before bed then 1,200 mg at bedtime.  It works some but not enough to allow me to sleep.  Is this a low dosage or should I look to a different medication?  What others are around??  The only meds that I know of that I haven't tried yet are the pain meds but I fear those too will make me feel tired the next day.

When the Neurontin doesn't work, about 80% of the time sleeping on the couch works to stop the RLS!  It's an old couch and not very comfortable but I can sleep there in minutes of laying down.  It's away from our 2 small kids so I'm wondering that somehow it psychologically helps me to know that I'm "on my own" and can get rest.  But this doesn't make sense since my kids both sleep well at night and probably won't wake up, not to mention that RLS is a chemical disorder, not a psychological one.  Strange stuff!  My wife misses me!

My neurologist is very good and in the RLS Foundation's directory but she isn't sure what else to do if the Neurontin doesn't work out.  Thanks so much for any assistance.

Craig P.
Fort Worth, TX

Medical Reply 

The Neurontin dose is getting up there and higher doses may help but the benefit may be marginal and side effects become more likely at those higher doses.

The painkillers are actually a very good choice in your situation and in general.  I usually start them before trying Neurontin (which is one of the favorite drug of neurologists) as I get much better results with less side effects.
 
Painkillers can be chosen by their duration.  Most are only active for 3-6 hours so morning sedation should not be a problem.  Most RLS patients start with Vicodin or Ultram (non-narcotic and less addictive and may work as well as narcotics).  Taking one nightly dose of a narcotic would rarely (if ever) cause addiction.
 
It is likely that you have some negative conditioning to your own bed as a place where RLS symptoms tend to occur and result in insomnia.  Most people with insomnia have problems sleeping in their own bed but fall asleep elsewhere easily (like on their couch while watching TV).  Once you resolve your bedtime RLS problems (which should be easy with the above advice) you should be able to sleep normally in your own bed (in time).

A Reply from Craig P.

Sent: Tuesday, May 10, 2005 8:35 PM
Subject: Re: Neurontin?

Maybe the pain killers I was on before was too strong.  My neurologist isn't big on pain killers but maybe I can talk her into it. 

Thanks again,
Craig P.  

Medical Reply 

Most doctors are leery about using narcotics in the long term.  Again, they are very safe and effective if used properly.  Also, consider Ultram as it works great for many RLS patients and is more doctor friendly.

Sent: Tuesday, May 10, 2005 8:13 PM
Subject: crawling spine

 
I am having these awful sensations of crawling, pain, chills and like I am coming out of my skin in my spine area. If i move around it helps. It is so unnerving and is making me very nervous. I have had my legs do it before but never my spine. I had surgery on my cervical spine four months ago.

Could this have any thing to do with it? I had surgery on my lumbar spine about 15 years ago. I am about to go insane with this, I have to get up sometimes and sit on the couch during the middle of the night and can not be still. I ask my neurosurgeon about it but  he did not know what to make of it. Any advice would greatly be appreciated.

Thank you very much,
Verna D.

Medical Reply 

It sounds like you do have RLS (Restless Legs Syndrome).  This can occur in your arms and almost any other muscle in the body including those in the trunk.  Trauma to the body and especially the spine (such as your cervical spine surgery) often provokes this disorder.
 
Treatment is readily available with either Requip or Mirapex and should take care of your symptoms.









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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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