Patient letters on RLS symptoms and remedies- Page 56

 

Kicking RLS/PLMD Patient


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

 

E-MAIL



Sent: Monday, November 29, 2004 2:36 PM
Subject: Cabergoline for RLS?
 
For one and a half years now I am using 1.75 mg cabergoline a day with optimal relief. I used Requip and Mirapex before. Because I feel more and more tired, I would like to stop for a week or so to find out whether cabergoline may be the problem.

After that week, can I restart the drug again at a dose of 1.75 mg a day if it does not seem to be the problem ?

 
Thank you so much for your help,
M.H.V.

Medical Reply

Generally stopping cabergoline for a week should be no problem other than the concern that your RLS will worsen while off the medication.  Starting again will simply bring you back to where you were when you stopped.

Sent: Wednesday, December 01, 2004 11:45 AM
Subject: Half-life of RLS drugs?

I take two .25mg (.50mg) tabs of Mirapex before bedtime. How soon is it suppose to take for  this medication to work?

What about taking .25 in am and .25 in pm-how long does the medication stay in my system?
 
After reading many e-mails, I may see about getting a prescription for Ambien. How long does this drug last (half-life of the drug)?
 
Thank you for this great web site. It is a blessing.

Medical Reply

Mirapex onsets in about 1-2 hours (depending on the individual's metabolism).  Generally, it is taken only 1-2 hours before symptoms occur and it will last about 6-10 hours after each dose.  Daytime doses are taken only if you have daytime RLS.
 
Ambien has a half-life of 2.5 hours so it is generally not effective any longer when you wake up in the morning.

Sent: Sunday, December 05, 2004 5:59 AM
Subject: Combining Mirapex and Neurontin
 
I am over 55, 163 lbs and in real good health, except for RLS. For the first three years of my RLS, I took Serzone. Then, for the past two years, I've was taking only 1 mg of Mirapex at 5:00 PM. Then, several months ago, I started taking 1.5mg of Mirapex at 5:00, since I was getting awake by RLS around 4:00 AM. And, this did take care of that problem. However, I started having RLS symptoms right after taking the 1.5 mg of Mirapex for about an hour and a half.

Then, after this hour and a half,  I could go to bed and have a very peaceful night. And, except for having to get up 2 or 3 time to go the bathroom during the night, since this "urge" activates my RLS and wakes me up. Once I go to the bathroom, I can get back to sleep without any signs of RLS. However, I didn't like the hour and a half of RLS prior to going to bed, so I decided to switch to Neurontin to see if it would do any better.

 
So, with my doctor's permission, I started on Neurontin. Well, I started out at 300mg the first night, with no RLS relief and no sleep that night. The second day, I took 300 mg in the morning and another 300 mg at 5:00. After 3 hours I started kicking while watching TV, so I took another 300 mg around 9:30, which did allow me to get 3 or 4 hours of sleep. The third day (yesterday) I took 300mg in the morning and 600 mg at 5:00. Boy, what a night.

Around 8:00 last night I started severe RLS and had it all night, without being able to sleep at all. You keep mention taking both Neurontin and Mirapex together for possibly better results. Can you be more specific? Otherwise, do I take 300 mg of Neurontin in morning and in the afternoon and 1 mg at night of Mirapex, or do I take a 300 mg of Neurontin and 1mg of Mirapex together during the day or just together at 5:00 PM? So, exactly what do you mean by "using them together"? 

 
One last question. When a person takes Neurontin or Mirapex and has RLS symptoms right after taking them, does this mean that the dosage is too high?

Thank you very much in advance,

Rich 

Medical Reply

Both Neurontin and Mirapex should be taken about 1-2 hours before RLS symptoms occur.  There is no reason to take RLS medication of any type in the morning for symptoms in the evening.  The drugs can be taken together and only trial and error will let you know how much of each you really need.
 
It is very unusual to have RLS symptoms immediately after taking RLS medications and I do not have any explanation.  Some (less than 10%) do get augmentation (worsening of RLS) with Mirapex but it manifests with increasing intensity of RLS symptoms earlier in the day. 

A Reply from Rich

Sent: Monday, December 06, 2004 6:07 AM
Subject: RE: Combining Mirapex and Neurontin
 
Thanks for your fast answersSince I emailed you, I've gone "cold turkey" with Neurontin, since I really hadn't been on it very long and I just read too many bad things about it, especially if you're like me and you want fast resultsIn the meantime, I have gone back to taking 1mg of Mirapex at around 5:00PM and none during the day.
 
The other evening I took 600 mg of Neurontin around 6:00PM which was too much to take too soon after just starting on this new drug. Then, around 9:00PM severe RLS symptoms started to "kick" in, and for the next 10 hours, until I finally started moving around in the morning, I had to put up with some very bad leg jerkingI got though the day okay and at 5:00 PM, took 1mg of Mirapex.

Then, since I was so tired,  I went to bed at 7:30 and sleep perfectly until 6:30 AM this morning. Well, I may have gotten up a couple of times during the night, but overall, I slept very good. I have to agree with you that there's no reason to take any of these medicines in the morning, except I thought you had to keep a certain amount continuously in your body.

 
Lastly, I was surprised you were not aware why I should have jerking legs a few minutes after taking Mirapex and 2 to 3 hours after taking Neurontin. I don't get any leg jerking, if I'm moving around or working right after I take Mirapex. But, if I just sit and watch TV, I do get minor leg jerking for a good hour to an hour and a half, before my legs finally settle down. I thought it may have been that I was taking too much dosage at one time.

Oh well, in any case, thanks for the information,

Rich

Medical Reply

The only reason that I can think of to explain why you get jumpy legs right after taking Mirapex is that it takes the Mirapex 1-2 hours to kick in and if you sit right away, that may provoke your leg kicks (which are not yet being helped by Mirapex).

A Reply from Rich

Sent: Tuesday, December 07, 2004 5:34 AM
Subject: RE: Combining Mirapex and Neurontin
 
Don't laugh too hard but the answer is much similar than that. The answer is that my legs would normally start getting jumpy around 5:30 - 6:00PM, except that I'm usually working outside. And, as long as I'm moving my legs, they don't get jumpy. Well, since the time change and weather change, I'm now inside sitting down at 5:30 - 6:00, so my legs would start getting restless at that time whether I took my medicine at 5:30 - 6:00, or if I didn't.

As you are aware, none of the medicines kick in right away, so if I take any of it at 5:00 and sit down, my legs will start jerking, until the medicine has kicked in, which for Mirapex is about an hour and half. And, for Neurontin it's longer. So, it appears as if the Mirapex is causing the jerky, but in reality, it's the lack of Mirapex for that time of the day, that's causing the jerky legs.

 
So, what I probably need to do is to take 0.5mg of Mirapex right as I leave work, around 4:00 and take the other 0.5mg at 5:30. Then, the Mirapex I took at 4:00 should kick in around 5:30 and prevent my legs from kicking, until the other 0.5 mg kicks in. In any case, my neurologist finally gave me a call and he says there's some newer RLS drugs he'd like for me to try. At least, I know that Mirapex works pretty good for me, once it gets going. Thanks for worrying about me.
 
Rich

Sent: Wednesday, December 08, 2004 4:34 AM
Subject: Problems with Neurontin?
 
I am a 41 year old female recently diagnosed with RLS, PLMD and PLMW.  All of my symptoms started very suddenly last March.  I tried Mirapex with poor results.  Initially I had some relief, but it was short lived, and as I increased my dosage the PLMD and PLMW got much worse.  I am now taking Neurontin 300 mg before bed and it works unbelievably well. Nary a twitch or jerk in sight. 

I am experiencing some dizziness, so I am sort of concerned about taking it during the day and at this point have opted to twitch and try and deal with the sensations in my hands and legs.

I have only been taking the Neurontin for about 1 week, does the dizziness pass in time? Are their any long term issues with taking Neurontin?

 
Elaine

Medical Reply

There do not appear to be any long term issues with taking Neurontin.  Often, the initial symptoms of dizziness and sleepiness tend to diminish with time.

Sent: Thursday, December 09, 2004 8:23 PM
Subject: Mirapex side effects?

I discovered your website during one of my all-nighters in front of the computer looking for anything that could help me find a cure or at least relief from my RLS.  I recently got a prescription for Mirapex and Ambien, I find the Mirapex makes me drowsy which is a good thing, but I seem to be having an allergic reaction, mostly itching. 

My initial RLS problem was greatly intensified when I began taking Allegra 2.5 years ago, but when I don't take antihistamines I have insane itch attacks that nearly drive me to the brink of suicide.   I have finally discovered some of the things I'm allergic to and have found some relief from that problem by avoiding the things that trigger my allergies,  but I still have RLS. 

The last 2 days I have noticed my muscles feel so sore and stiff, and occasionally I have pain shooting up my legs, I never had this before taking Mirapex, could this be a side effect?  I don't like taking medication for anything and only do so when there is no other option.....I tend to be very sensitive to many kinds of medicines, the one constant thing seems to be RLS even with taking Tylenol.  I am at my wits end. 

Anything you can suggest would be greatly appreciated.

Thank you.
Barbara M.

Medical Reply

It is certainly possible that Mirapex could be causing your leg pains however, it would be more likely for Mirapex to cause this soon after taking rather than later.  It could be that you are developing the neuropathy pain that affect some RLS patients.
 
Allegra and all antihistamines can worsen RLS as you have already found out.  You may want to try Requip instead of Mirapex as they are very similar but may have different side effects.  Another choice would be Neurontin which can help RLS and neuropathic pain.

Sent: Tuesday, November 30, 2004 4:50 PM
Subject: Sublingual Mirapex
 
Is it possible to absorb Mirapex under the tongue?   If I forget to take my Mirapex on time I let it dissolve in my mouth.   Seems logical....

Mary Lou

Medical Reply

 Mirapex is not formulated to work by dissolving under the tongue so this method of taking it will not be helpful.

I
Sent: Thursday, December 16, 2004 10:55 AM
Subject: RLS and Insomnia?
 
Has anyone ever mentioned that their RLS symptoms get worse around the time that their period is supposed to start?    I just turned 47 and have had problems with RLS off and on for years.  I started working midnights and sometimes the RLS would start at about 4:00- 5:00 am, but would not occur every morning/night. 

After awhile, I started documenting when the RLS was worse and it was always within a week before and week after my period.  It was almost unbearable.   I feel like a zombie because I cant sleep.  My bedroom has become the living room because I twist and turn all night keeping my husband up.   

My doctor put me on Sinemet and after I complained about the RLS being worse around my period he raised the dose to 25-100.  I have read that Sinemet has a lot of side effects, including insomnia.  any suggestions on what else I can take for the RLS and insomnia? 

Medical Reply

It is well known that female hormones influence RLS with many patients worsening around the time of their menses.
 
Sinemet works well at first for RLS but can cause worsening of RLS symptoms after a while (in most patients).  Mirapex or Requip are much better choices for your RLS symptoms and Ambien (if you still need something for sleep once RLS symptoms are gone) would be reasonable for sleep.

Sent: Tuesday, November 23, 2004 7:42 AM
Subject: Need some feedback

Originally a sleep study doctor (had trouble sleeping) put me on Clonazepam .5 mg He took me up to 2.5 which was really a drugged state for me. Another sleep doctor said to go off that (fun) and put me on Mirapex 2 a night of .25 mg Did not help RLS and leg pains so current general Practitioner put me back on Clonazepam. which I take 1 mg at night along with the Mirapex. Does not seem to help much and sleep is getting worse. plus very tired and feeling drugged when I get up in the morning.

Have a new doctor who says he has no experience with Mirapex and has no idea if there is an interaction but says to give it a try. been on both  now for 2 months and sleep not great and no help with RLS. Comments? Is there interaction? Should I be talking both? Up level of one and eliminate the other?

I need medication for RLS and something to assist  sleep as I can't sleep without the Clonazepam and then not great if the RLS kicks in before I get to sleep.

Appreciate your comments as you obviously have a lot of experience in this after reviewing the web site,

Kingsley B.
Toronto, Canada

Medical Reply

Mirapex helps most but not all RLS patients.  You might need a higher dose and can discuss increasing the dose slowly to about 1 mg.  If there is no improvement at that dose then there is no reason to take the drug.  It might be worthwhile to try Requip which is similar to Mirapex but may work when Mirapex does not help. Make sure that you take either of these medications at least 1-2 hours before bedtime to give them adequate time to kick in.  There are no interactions between Mirapex and clonazepam.
 
Clonazepam has a very long half-life and very often causes daytime sleepiness as a side effect.  Shorter acting sleeping pills such as Halcion are even better.  Here in the USA, Ambien is currently the best sleeping pill but is not available in Canada.  Imovane is somewhat similar and would probably be a better choice than the benzodiazepines (clonazepam or Halcion).
 
A pain killer, such as a narcotic or tramadol before bedtime may also be very helpful and help resolve your RLS symptoms and let you sleep.

Sent: Friday, December 17, 2004 1:58 PM
Subject: Dopa Bean supplement

Your website is so helpful for RLS patients; thanks very much for the all the information.
 
I am wondering whether you've heard of anyone successfully using a OTC supplement made from Macuna Pruriens (the one I'm looking at lists the ingredient as catecholamines 66 mg 20%,  L-dopa 50 mg 15%, Velvet Bean (mucuna pruriens) (seed extract) 333 mg ) to treat mild-to-moderate RLS. I am one of those women who mostly has trouble with RLS in the week before my period.

It seems to have gotten a bit worse in the last few years (it's now in my hands as well) and my doctor had me start on Wellbutrin, but then I developed a high blood pressure problem and to make sure it wasn't the Wellbutrin (it wasn't), she took me off it and I haven't gone back on it. It would be nice to avoid having to try it again or to have to go to the more serious Parkinson's drugs, so I was thinking of giving this OTC product a shot.

MJD

Medical Reply

I know nothing about this OTC product except for what you have written.  If it contains L-dopa then it may have some benefit for RLS but then this would be no different than taking a Parkinson's disease drug (as L-dopa is the original Parkinson's disease drug).

A Reply from MJD

Sent: Monday, December 20, 2004 12:00 AM
Subject: Re: Dopa Bean supplement
 
Thanks, that makes sense. It might be even worse than taking Mirapex or Requip since RLS patients seem to take these drugs only when they know they are going to have trouble, but with this supplement you would take it twice a day every day.
 
On another front,  I've never had my ferritin level tested and am going to ask my PCP to do a draw and am wondering if it makes sense to try to schedule the draw to happen sometime in the week before my period when I am experiencing the symptoms the most or would that not matter?

MJD

Medical Reply

It makes no difference when you have your blood taken for your ferritin levels as they change slowly and reflect iron stores.
 
Mirapex and Requip also have to be taken on a regular basis before symptoms occur.  They do not work well after symptoms are present.

Sent: Monday, December 20, 2004 3:40 PM
Subject: Ultram effectiveness
 
I take pain meds for severe RLS.  I've taken 100mg Ultram in the morning and 100mg in the afternoon.  I've taken it for 7 years now.  The past year is the first that I started taking drug holidays using Vicodin.  (I only take Mirapex and Neurontin at night because they knock me out. ).  Lately I've noticed that the Ultram is not working as well as it used to. 

I'm afraid its starting to loose its effectiveness.  I've tried Klonopin and it doesn't do anything for me.  What could you suggest for me?

Thank you,
Mary.

Medical Reply

You may want to switch off Ultram.  Vicodin is a reasonable choice although methadone (if you can get your doctor to prescribe it) works better and has no acetaminophen (Tylenol) in it.

A Reply from Mary

Sent: Tuesday, December 21, 2004 3:13 AM
Subject: Re: Ultram effectiveness
 
How long could I take methadone or Vicodin without risking addiction.  Or would it work to alternate the 2 drugs? 

Thank you,
Mary

Medical Reply

There is no known time limit to developing addiction or not.  I do have many patients who alternate Ultram and the narcotics but alternating narcotics (methadone and Vicodin) would be of no benefit.

Sent: Tuesday, December 21, 2004 7:56 PM
Subject: Requip and possible weight gain?
 
I was placed on Requip about 2 months ago. Since then I have gained 15 pounds.  Is this possibly a side affect of the Requip?  I am 37 years old  and 66 inches tall and have always maintained my wt. at 120  -
125 lbs.  I have not weighed 140 since I was 20 weeks pregnant with twins which was 12 yrs. ago. The only other change that took place is that he also lowered my Wellbutrin from 300 mg to 150 mg. Please, what are your thoughts? 

Thanks,
Mother of 12 year old twins

Medical Reply

I could find no reference to weight gain with Requip.  It is certainly possible that the drug could be causing this problem but it has not yet been reported nor have I seen this in my patients on Requip.

Sent: Sunday, December 26, 2004 8:08 AM
Subject: Pain with RLS?
 
I am a 55 year old female.  I usually don't take part in e-mailing strangers or chat rooms, but I am at my wits end.  It is a possibility that I have RLS, my doctor and I are still investigating.  However, for the past 3 days I have been taking 300mg. before bed of Neurontin.  It has helped in a minor way.  I understand it has to "get into my system". 
 
In the readings that I have been doing over the past few days, I have a basic understanding of RLS, however, I don't often hear about people who have RLS who are in serious pain.  I feel so much pain in my legs - yes they are restless, but the pain is worst than that.  I even feel it in my hips.  I do have a scoliosis and have recently had back x-rays taken.
 
Any input on the pain part?
Thanks, 
J.C.

Medical Reply

About 15-20% of RLS sufferers have pain.  This is likely from an associated neuropathy and is not well understood.
 
Neurontin often helps this painful neuropathy but higher doses are usually needed (600-1200 mg per dose and up to 3 times per day).  It does not have to get into your system as it works right away but we do increase the dose slowly in order to let your body get used to the drug (which may help prevent side effects).

Sent: Sunday, December 26, 2004 8:59 AM
Subject: RLS with sleep?

I have had RLS for as long as I can remember.  I was once on Lithium and it went away and so did the ringing in my head which I still have today and choose to live with.  The only way I can escape RLS is to sleep, which seem contrary to everyone else.

Thanks,
Fred H.

Medical Reply

Actually falling asleep is a common way to relieve RLS.  It is very similar to back pain.  If you can fall asleep despite the back pain, then the pain is gone once you are asleep (of course since you do not perceive these sensations while asleep).  Unlike back pain which can occur 24 hours per day, most RLS sufferers have the symptoms only at night so by morning time they are gone.

Sent: Sunday, December 26, 2004 12:05 PM
Subject: Mirapex and Seroquel?

I have PLMD, and Severe anxiety.  I am considering starting Seroquel.  I am wondering how this might interact if I took it with Mirapex. I am also not currently taking my Mirapex, because the doctor wants me to take 1mg a night, and it severely disturbs my sleep.

Any thoughts?
Thanks,
Jamie

Medical Reply

There is only one case report where Seroquel may have helped RLS but we do not know too much about this drug and RLS although this drug does antagonize dopamine so it should worsen RLS.  They only way to tell would be trial and error. 
 
The only interaction between the drugs is that Seroquel can diminish the effectiveness of Mirapex as it antagonizes the dopamine effects of Mirapex.
 
If you need a full one mg of Mirapex and it disturbs your sleep then you should not take it (maybe Requip may work better).  If you can relieve your RLS symptoms with a lower dose that does not affect your sleep then that may be another option.

A Reply from Jamie

Sent: Saturday, January 01, 2005 9:25 PM
Subject: Re: Mirapex and Seroquel?
 
I have been using .25 of Mirapex the last couple nights, and it has been working well.  As far as I can tell.  I think I will give it a few weeks, and move up to .5. As for the Seroquel, I am going to try some alternatives before I go as far as taking Seroquel.
 
Thanks,
Jamie

Medical Reply

You can try an even lower dose of Mirapex (.125 mg).  It is always best to take the lowest dose that works. Wellbutrin is currently the best drug for RLS patients with anxiety as it may even help RLS symptoms in addition to anxiety.

Sent: Sunday, December 26, 2004 5:19 PM
Subject: Ambien addiction?

I have been using ambient for approximately 3 months with essentially no drug holidays. What do you recommend that I do to avoid ambien addiction?  At this point, will taking a drug holiday every 2 weeks help?

Do you recommend any other non-addictive medications to try? I have tried all over the counter medications such as Benadryl, valerian root,  and kava kava with no success.

Thanks for your help,
Shelly

Medical Reply

Ambien is not an addictive drug.  I still suggest drug holidays just to be extra careful.  You may have to consider going without anything for about 2 days every few months (if you can).

Sent: Monday, December 27, 2004 10:45 PM
Subject: Drug holidays?
 
I am a 49 year old female who was diagnosed with RLS  7 years ago.  I've tried various drugs including amitriptyline, Ultram, benzodiazepines, Permax, Sinemet, Neurontin, Mirapex and Requip to name most.

The only drug that truly worked for me was Mirapex, I started at a low .125 mg twice a day but over the past 6 years have had to increase that to a total of 1.5 mg per day.  I'm increasingly experiencing bouts of RLS that last for a week to a month that I get no relief from,  not even from Mirapex.  I've tried drug holidays,  but NOTHING comes close to Mirapex and now even that seems to be wearing out on me. 

I've tried going back to drugs that have worked somewhat satisfactorily for me in the past,  but they don't work at all anymore.  Requip is the only one that comes close, but it doesn't work at night.  Also, the symptoms have moved into my arms and shoulders and NOTHING stops that.  I've read that pain meds can help RLS in arms (Vicodin or Darvocet).  I've never experienced pain with my RLS, just this terrible electricity in my limbs. 

How high a dose can I go with Mirapex?  Do I raise the dosage each time I have one of my 'bad episodes'?  I'm afraid someday I'll have tried every drug out there available for RLS!

Brenda

Medical Reply

My suggestion would be to try the pain medications.  They usually help RLS symptoms with or without pain. This may let you get off (or reduce the dose) Mirapex for a while and see if it will work again at a lower dose (perhaps in combination with a pain killer).

Sent: Tuesday, December 28, 2004 11:46 AM
Subject: Medical advice for worsening RLS on Sinemet?
 
I have been reading material provide on the RLS web site.  I've read many of the e-mails sent to you for advise and feel what I'm presently doing is incorrect and need advise on what I should be doing.

I was diagnosed with RLS about three years ago and have been taking Sinemet in increasing dosage since then.  My symptoms are becoming increasing more intense and at this stage I cannot relax during the day at all.  In the evening, before daylight savings I would taking my medication about 8pm, then approximately every 3 to 4 hours until early morning.  I now have started taking medication about 4pm then every 3 to 4 hours.  Long trips or enjoying the holidays with my family is becoming increasingly difficult. 

Your help and advise is greatly appreciated.

 
Thanks,
Chuck G.

Medical Reply

Your problem is extremely common when treating RLS with Sinemet.  You are getting worsening or RLS from Sinemet (called augmentation).  You need to speak to your doctor about switching from Sinemet to Requip or Mirapex and that should solve your problem.

Sent: Sunday, January 02, 2005 1:16 PM
Subject: RLS worsened with an epidural?
 
I have been an RLS sufferer for many years.  I believe it became worse after I had an epidural before my oldest child's birth.  I experienced temporary paralysis after delivery and I believe it has made my RLS worse.  My regular doctors tried antidepressants for several years until I finally went to a neurologist.
 
The first neurologist I went to put me on Permax and Klonopin.  Since then, my new neurologist has put me on Requip (because Permax is believed to cause complications with the heart). I started off with taking two 0.5 mg tablets at night, but he has increased it recently to three 0.25 mg tablets at night.  I'm also taking 1/4 of a 2 mg tablet of Klonopin in addition to the Requip. 

The problem is, I've experienced severe depression since this increase.  I would like to get off of the Klonopin because I feel that I need to increase the dose on some nights.  I feel sleepy during the day and never feel I get enough sleep at night. Is it the Klonopin or the Requip causing the depression?  Also, do you think the complications resulting from the epidural during my first pregnancy could have been the onset of RLS?

 
Thanks,
C. Wood

Medical Reply

It is difficult to say whether or not the epidural had anything to with worsening your RLS but I suspect that it may have more to do with your pregnancy (which tends to worsen RLS).
 
Klonopin is known to cause daytime sedation as it has a very long half-life.  It is also an addictive drug.  It might be better to discontinue this drug (talk with your doctor about slowly weaning off the drug) and rather increase the dose of Requip (you are still on a relatively low dose).  Benzodiazepines like Klonopin are also known to increase depression.

Sent: Sunday, January 02, 2005 10:51 PM
Subject: Extreme dry eyes with Mirapex?

I have been on Mirapex 1.25 mg  (4) years and Ativan 2mg (20) years. for RLS. After being on the Mirapex about one year I developed severe dry eyes and to help keep any moisture in my eyes at all they had to cauterize shut all 4 tear ducts. I use ointment in my eyes at night and since then it has been OK.

Last summer I had another sleep study that showed I basically have refractory RLS with associated pathologic daytime sleepiness.  My Mirapex was increased to 1.50mg and a change in job allows me to achieve more sleep so I have been feeling better than I had in years.

About 2 weeks ago, I again started to experience the "sandpaper" in the eye feeling.  It is very intense and almost unbearable.  My question is what alternatives if any for medication could I try.  My system is really sensitive to meds.  We already tried Requip last summer for a drug holiday from the Mirapex.  It gave me migraine headaches and had to be stopped.

The side effects from the Mirapex have been numerous and yet I am not sure what else to even try at this point.  I have heard you mention Ultram.  Could that be used with the Ativan and decreasing the Mirapex way down?  At this point stopping the Ativan really is not a choice.  I was put on it 20 years ago and did slowly wean myself down off it over a months time and managed a (3) day drug holiday.  The physical effects were horrible and I was almost at seizure level when it was restarted. I am also on synthroid and Lithium. 

Since RLS is worsened by Lithium I was tried on other medications for that also but again my chemical makeup caused them all to have severe side effects that required me to return and stay on the Lithium.

You have helped me much with your answers in the past and I am hoping you may have some suggestions for me now.

Sincerely,
KM

Medical Reply

Ultram, possibly alternating with a narcotic pain killer (like Vicodin) may be very helpful to eliminate Mirapex.  In addition (or instead), Neurontin can be used and should be helpful.

Sent: Tuesday, January 04, 2005 10:55 AM
Subject: Mirapex not helping?
 
I have taken Mirapex for a year and a half. It has been a life saver for me, up to now. My present dosage is  Mirapex 0.25MG ,half pill at noon ,half pill at supper and one hole pill at bed time. In the last three weeks my RLS has returned with a vengeance. Would you suggest changing to Requip or increasing my dosage of Mirapex? I also take half pill of oxazepam 30MG at bedtime.
 
I would appreciate your help
 
Thank You
Jackie

Medical Reply

Generally I would increase the Mirapex (slowly) and if that does not help (once a significantly higher dose is reached) or worsens the problem then a change to Requip may be helpful.

Sent: Tuesday, January 04, 2005 5:01 PM
Subject: Time to take Requip?
 
I take .50 mg of Requip at night for PLMD.  I also take .50 mg of Xanax for insomnia. How far in advance of bedtime should I take the Requip?  Would it be beneficial to take the Requip and Xanax at the same time?
 
Thanks.
TJS

Medical Reply

It takes Requip about 1-2 hours to be effective for RLS.  Therefore, it is best to take this drug about 1-2 hours before bed (most RLS sufferers can tell how long it takes for the drug to work for them).  The Xanax usually becomes effective in about 15-30 minutes so that is the interval before bedtime that it should be taken.

Sent: Saturday, January 08, 2005 2:31 PM
Subject: Worsening of PLMD
 
I have the following conditions:

Depression – currently treated with Wellbutrin XL 150 mg and Prozac 10 mg.
Sleep apnea – currently treated with CPAP.
PLMD – currently treated with .50 mg Requip at bedtime.
Insomnia/Anxiety – currently treated with .50 mg Xanax at bedtime

During the initial sleep study from which the diagnosis of PLMD was made I had a PLMD index of 37.7. I was initially treated with Mirapex and then switched to .25 mg of Requip. A second sleep study (related to the sleep apnea treatment) showed my PLMD index at 18. A third sleep study (for CPAP titration) showed my PLMD index dropped to 11.2 at .50 mg of Requip.

Within the past month I have begun to experience periodic RLS symptoms during the evening hours and at bedtime. My wife also reports a significant increase in leg movements during my sleep.

These symptoms roughly coincide with a decrease in my dosage of Wellbutrin XL from 300 mg to 150 mg. I am wondering if this change in the dose of Wellbutrin could have caused the increase in RLS/PLMD symptoms or if my disorder has worsened necessitating an increase in Requip and/or the utilization of another medication.

Thomas J. S.

Medical Reply

First of all, the only important PLM finding on sleep studies is the PLMAI - that is the PLM arousal index.   PLM's that do not cause arousals are not treated and have virtually no medical significance.  So, it is important to know whether or not your PLMD (wrong terminology as that stands for PLM Disorder) index is a PLM Index or PLM Arousal Index.
 
Wellbutrin does have dopamine like properties (just like Requip) so lowering it may worsen RLS or PLMS (PLM's during Sleep).

Medical A Reply from Thomas J. S.

Sent: Sunday, January 09, 2005 8:01 AM
Subject: Re: worsening of PLMD
 
Thanks for the clarification. This makes me look a lot differently at my treatment.  On my initial sleep study the PLMAI was 0.6, on the second and third it was 0.  Is an index of 0.6 typically significant enough for treatment?  Even that is the case , it would appear the Requip at .25 mg eliminated PLM's that caused arousals.   If the Requip dosage is lowered or eliminated does the potential exist for the PLM symptoms to became worse than they were before treatment?
 
I would appreciate any additional comments you may have. I will raise this issue with my doctor. 

Medical Reply

Here is the severity information from our website:
 
The severity of PLMD is measured by the amount of leg jerks per hour (PLMD index, mild = 5-24/hour, moderate = 25-49/hour, severe = more than 50/hour).
 
As a PLMAI of .6 is  subclinical and within normal limits, it does not appear that you have any need for Requip.  You should discuss this with your doctor.

Sent: Sunday, January 09, 2005 3:21 AM
Subject: Arms and legs jerking in bed?
 
i have recently started sleeping with my girlfriend, but just recently she has complained, with good reason that during the night i 'kick out' and it is hurting her.
 
I am a 27 year old man of good health. During the day i am extremely calm and caring towards everyone-especially those that i care for. I am rarely stressed and can not remember the last time i had nightmares.
 
My girlfriend says that during the night, i will all of sudden either kick out or swing my arm in her direction. Last night i caught her in the face and also in the back causing her much pain. Neither of us wish to sleep together at the moment until this has been resolved.

Bert

Medical Reply

You may be having PLMS (Periodic Limb Movement Disorder).  This can cause your arms or legs to kick or jerk but if it is not causing arousals (sleep stage changes from deeper to lighter sleep which you would not notice as you do not wake up from these jerks) resulting in daytime sleepiness on your part, then we do not treat them.
 
A sleep study (only if necessary to decide on treating daytime sleepiness) would confirm this diagnosis.  If you do not have any daytime sleepiness then the only treatment necessary is to get twin beds and separate them by a few inches when you actually go to sleep with your bed partner.

Sent: Monday, January 10, 2005 9:58 PM
Subject: Restless leg syndrome and ferritin levels?
 
After 15 years of being awake and 8 doctors I finally found one who said my iron level should be between 20 and 200 to be normal.  Mine was 26.  He said that was to low.  He says if a person's was below between 50 and 75 he conceded that low in a person with RLS.  So he had me take Nu-Iron .  I had a hard time finding them but he insisted on Nu-Iron only.  Well after 6 months no restless legs.  I did have my liver checked and all is well.
 
E R

Medical Reply

Usually we try to get the ferritin level as close to 45 as we can.  It is usually quite difficult to do that with oral iron supplements and not everyone who is able to raise their serum ferritin to 45 or higher will benefit from doing so.
 
Any iron supplement that is tolerated and brings the ferritin level up is fine.

Sent: Tuesday, January 11, 2005 9:45 PM
Subject: Would like feedback on condition
 
I don't have the typical RLS symptoms of having creepy crawling sensations in my legs.  I have no problem going to sleep, but as soon as I go to sleep my legs will jerk and move periodically.  A sleep study measured PLM at 90/hour with frequent arousals from sleep.  I usually wake during the night and have varying degrees of success in falling back asleep.  I don't remember my leg movements even though I am told that within seconds of falling my right leg will typically jerk.
 
I recently had a blood test where ferritin was measured at 21 NG/ML with the normal level being from 20 to 380.  Doctor said this was good.  My question is this really a good level? 
 
I am in good health, except for sleeping.  Doctor gave me Sinemet but it did not help.
Any comments.
 
Jim

Medical Reply

For RLS and PLMS (leg jerks during sleep) a serum ferritin level of about 45 is much better (despite what the normal levels are in your lab - that is for non-RLS patients).  Getting the serum ferritin level up (often hard to do) will often help the RLS/PLMS symptoms.
 
Mirapex or Requip are much better choices than Sinemet for RLS or PLMS.

Sent: Wednesday, January 12, 2005 11:04 AM
Subject: Mirapex side effects
 
I have found your site to be very informative and you have been most helpful in answering my previous questions.  I also can't tell you how fortunate it is to have finally found relief from RLS by taking Mirapex.  I have been on Mirapex for about a year.    While I suffer various side effects from the medication, I believe the cure is worth the aggravation. 

But I still have concerns with one side effect, even though I am taking an extremely low dose. I take .25 mg about two hours before bed time, but invariably I will get this most uncomfortable feeling in my chest each night as I lie down to sleep.  It goes away after about ten minutes but it is somewhat frightening. 

The best way to describe it is that I think my heart begins to race and/or I have a sort of panic attack.  That may not even be the best description of how I feel...I just know that it is a most unusual and scary feeling.  I guess it doesn't help to hear all this news about these other drugs that are said to be safe and all of a sudden the FDA issues warnings saying the drugs can be harmful to your heart. 

Am I  worried about nothing or should I consider asking my doctor to change me to another medication? 

 
JD

Medical Reply

It is impossible to say whether or not your symptoms from Mirapex are benign or medically dangerous as they are somewhat unusual.  It might be worth a change to Requip which is a similar dopamine agonist but has a different side effect profile

Sent: Wednesday, January 12, 2005 9:43 PM
Subject: Found something that made my Restless Legs disappear

I have just discovered a miracle drug for my RLS.  I have had  RLS for 40 years, with it being severe for the last 10 years.  I take Mirapex (3 years), have previously taken Permax ( 4 years) and also have tried everything including iron, magnesium, calcium, B12, acupuncture, avoiding wheat and sugar, etc. I also have been under the study and care of Drs. Early and  Allen of Johns Hopkins.   Mirapex allows me to sleep most nights, but I still go through much pain getting to sleep, pace on airplanes, and dread for night to come. 

In December I had bronchitis, a sinus infection, and a severe cough.  My Dr. prescribed 4 medications.  While on them my RLS disappeared.  I flew from VA to Hawaii and sat peacefully all the way and even went one night without taking my Mirapex. I was sleeping like a baby.  Immediately when the medications were over, the RLS came back. 

I went back to my doctor and asked him to work with me to prescribe each for a week to see which one helped the RLS.  The miracle drug turned out to be Profen Forte which is made of 90mg of Pseudoephedrine (a decongestant) and 800 mg of Guaifenesin (an expectorant) . I have a Physicians Desk Reference (PDR) and the ingredients in Profen Forte (prescription) are the same as in Sudafed non-drying sinus liquid caps (non-prescription) except 1 Profen is 3 times the strength of 1 Sudafed. 

I have not tried using Sudafed to see if it has the same results.   I take two  800mg capsules of Profen Forte a day.  The RLS went away within a day of starting the Profen and has remained gone for 10 days now.  I notice no side effects.  I am still taking my Mirapex.

I have no explanation for the result but I am praising the Lord.  I am feeling wonderful with a peace in my legs that I had totally forgotten could exist.  I went to a movie tonight and sat through it without standing up in back for the first time in at least 20 years.  I pass it on hoping it will work for you too and hoping the doctors can experiment with this to discover a cure for RLS.

Terry C.

Medical Reply

I have absolutely no explanation as to why the Profen Forte has helped you.  The two ingredients should have no positive effects on RLS.  Guaifenesin is a mucous thinner that has no effects (good or bad) on RLS.  Sudafed (pseudoephedrine) sometimes worsens RLS so that is even more difficult to explain.
 
It is not uncommon for RLS patients to get better or worse with drugs that should do the opposite.  There is much more that we cannot explain (than is understood) with RLS.

Sent: Wednesday, January 12, 2005 11:04 AM
Subject: Mirapex side effects
 
I have found your site to be very informative and you have been most helpful in answering my previous questions.  I also can't tell you how fortunate it is to have finally found relief from RLS by taking Mirapex.  I have been on Mirapex for about a year.    While I suffer various side effects from the medication, I believe the cure is worth the aggravation. 

But I still have concerns with one side effect, even though I am taking an extremely low dose. I take .25 mg about two hours before bed time, but invariably I will get this most uncomfortable feeling in my chest each night as I lie down to sleep.  It goes away after about ten minutes but it is somewhat frightening.  The best way to describe it is that I think my heart begins to race and/or I have a sort of panic attack.  That may not even be the best description of how I feel...I just know that it is a most unusual and scary feeling. 

I guess it doesn't help to hear all this news about these other drugs that are said to be safe and all of a sudden the FDA issues warnings saying the drugs can be harmful to your heart.  Am I worried about nothing or should I consider asking my doctor to change me to another medication? 

 
JD

Medical Reply

It is impossible to say whether or not your symptoms from Mirapex are benign or medically dangerous as they are somewhat unusual.  It might be worth a change to Requip which is a similar dopamine agonist but has a different side effect profile.

A Reply from JD

Sent: Thursday, January 13, 2005 5:40 AM
Subject: Re: Mirapex side effect

I appreciate your quick reply and will follow up with my doctor.  I really don't want to change the medication since it has been so helpful, but of course if it is medically dangerous for me to continue then I will make the change.  Are there any tests my doctor can perform to determine if the symptoms I am experiencing from Mirapex are benign or medically dangerous? 

 
JD

Medical Reply

There is no way to tell if your symptoms are dangerous or not.  The only major concern would be a heart problem and a stress test should clear up that concern.  It is most likely that the side effect is benign, but even so, if you can do better with Requip (I use Mirapex and Requip interchangeably), then why not change and see if you can get rid of that side effect?

A Reply from JD

Sent: Tuesday, January 25, 2005 4:45 AM
Subject: Mirapex side effect
 
Thank you for this site.  It has proven to be very helpful and informative and has provided much useful information for RLS.  Fortunately I have found relief with Mirapex but one uncomfortable side effect is severe acid indigestion at times.  Any recommendations on which OTC medications will provide  best relief?  I have tried such things as Tums and even the old standby, baking soda, but they don't do the trick.
 
JD

Medical Reply

You may want to try Zantac, Pepcid, Tagamet or Prilosec.  Any of those should work well although Prilosec is the most potent (but does not have greater side effects than the others).
 
It might be worthwhile to change to Requip, which is similar to Mirapex in treating RLS but may not have the same side effects.

Sent: Thursday, January 13, 2005 10:35 PM
Subject: RLS and dopamine
 
I am convinced that RLS is an effect of insufficient (or inefficiently processed) dopamine, which I find confirmed in readings on the web and elsewhere.  But my own experience persuaded me long before reading, for the following reason:  I have ADD and for a long time have taken Dexedrine in combination with various other ADD medications.  In order to avoid tolerance to the Dexedrine, I abstain completely when there is no work-related reason to take it. 

The only exception to this rule is occasionally when I must sit in a car or on a plane for hours, and (especially when tired) have RLS.  It is mild compared to the symptoms described here, but uncomfortable enough that I must take Dexedrine only to relieve the symptoms.  It goes away immediately with Dexedrine.  Since I know that Dexedrine operates primarily on dopamine, I conclude that it is a sudden decrease in dopamine that brings on the symptoms. 

 
My problem is that I want badly to find a substitute for the Dexedrine, as I live in fear of addiction to it.  For the past year, when I have taken a week or two as "vacation" from the Dexedrine, I find that I can not sleep well, and my husband complains that when I do sleep, my movements disturb him. 

Could I have RLS as a result of taking Dexedrine regularly for almost 10 years now?  That is, is it possible that my use of this drug has permanently depleted me of dopamine so that without Dexedrine I have RLS?  And if this is the case, would a regular dose of the drugs you describe (Requip, Mirapex, etc.) be enough to restore what is missing? 

 
Thanks for any advice,
Nelie F.

Medical Reply

You are partially right in your first statement that RLS is a dopamine problem.  We are still trying to sort out exactly what the problem is with dopamine, but this does seem like one of the key problems with this disorder.
 
Dexedrine may cause some release of dopamine and therefore help RLS somewhat (this will vary considerably with RLS sufferers as many do not get any relief from this drug).  Taking Dexedrine does not cause RLS and cannot deplete dopamine over the long run.
 
It is likely that RLS is a cause of ADD as it causes what appears to be hyperactivity, poor concentration and the inability to sit and pay attention.  There have been studies done on ADD children and up to 25% of them may have RLS which when treated will resolve the ADD.

Sent: Friday, January 14, 2005 11:59 AM
Subject: RLS worse with back problems?
 
My mother has suffers from RLS....she has had this problem for over 30 years. Needless to say she has tried dozens of remedies without much help. She did damage her back in a snowmobile related injury many years ago.  Could this make her RLS worse and if so should she have an MRI to determine if this may be a cause of her worsening condition?

Do you recommend Ropinirole?  What is its success pattern? We have also read that diet may play a role.  Any recommendations from you will be very much appreciated. 

Terry M.

Medical Reply

Trauma to the body, especially to the back or spine may precipitate or worsen RLS (we have no idea why), but once that has occurred there is nothing you can do to reverse the situation (that is by doing anything to the back).
 
Requip (ropinirole) or Mirapex (pramipexole) are the two best drugs for RLS that usually work great to relieve RLS symptoms.

Sent: Wednesday, January 19, 2005 7:26 AM
Subject: Switching meds

I stumbled upon your website and found it very helpful.  I have had RLS since the birth of my child 6 years ago.  my symptoms are severe and have required medication nightly since.  I started taking Permax but switched to Mirapex because the Permax makes me extremely tired and unable to have any kind of social life.  I am now finding that my symptoms are starting to occur earlier in the day and I am requiring slightly higher doses of the Mirapex to obtain relief. 

If I switch back to the Permax for awhile and then resume the Mirapex would that help to decrease my daytime symptoms and the dose of Mirapex required?  Do I need to worry about developing any kind of neurological disorder as a result of taking these drugs long term.  I am somewhat scared about my future health, knowing that I have needed to take these drugs for so long. 

Thank you so much for your advice.

Medical Reply

It is possible that you are getting augmentation with Mirapex.  This means that the symptoms may get worse and occur earlier in the day due to taking the drug.  This may still occur if you change to another dopamine like drug (Permax or Requip), although it may still be worth a trial to see if you improve (Requip is better tolerated than Permax and safer).
 
You may want to consider a change to Neurontin or other classes of RLS drugs.

Sent: Wednesday, January 19, 2005 11:25 PM
Subject: Does Orgasm " treat" RLS?

I have had RLS since young childhood.  Once married I slept well and was still.  Once sexual fulfillment declined a bit, I began to feel twitching in my legs and would gently move and reposition myself in bed… (she’s great and a God send truly – but pregnancies and babies and all that plus work and life may reduce the level of sexual fulfillment happening – yes?).

My wife would say “be still” and when I wasn’t she’d think that I was punishing her for no sex or being a spaz.   If she “gave in” and “treated me” , after sex I’d be still and sleep great.  So does the chemistry of orgasm treat RLS?

Medical Reply

We do not understand why orgasm helps RLS but this seems to benefit both male and female RLS sufferers.  It is one of the many mysteries of this disorder.

Sent: Tuesday, January 25, 2005 10:01 PM
Subject: RLS at bad times

I found your website after Googling "restless leg."  I don't have RLS often, but when I do, it usually happens in my right calf muscle and sometimes in my right arm just below the elbow.  I can usually cure it by standing for awhile, but sometimes it's not convenient to do so, such as in church or traveling by car and stretching has little if any effect.  What can I do to stop RLS in such situations?

Also, I wonder why RLS only happens when I'm sitting, never when I'm standing or laying down and why it often happens in the calves.  Any ideas?

Medical Reply

I have no idea why your RLS is not worse when lying down compared to sitting as that is when most RLS sufferers have their worst symptoms.
 
To stop RLS symptoms when traveling or sitting in church you would need to take medication about 1-2 hours before.  You can choose from many, but Requip and Mirapex are the best choices.

Sent: Thursday, January 27, 2005 2:12 AM
Subject: Medication for RLS
 

I was wondering why you think Requip and Mirapex are the best choices? I was on Mirapex for about 3 years and started getting augmentation. The doctor told me that you don’t get augmentation with Mirapex but I definitely did.  I have a severe case of RLS, and my parents both suffered with RLS. I also suffer with it in my arms and chest.  I start getting RLS a lot of times early in the evening when I am fixing dinner. There are many times when I can’t even sit to eat. If it doesn’t start early, it will start about 10 PM.  

 

I am on Neurontin along with Vicodin and Xanax. I usually take 900 mg of Neurontin around 10 PM and then 1 Vicodin and 1 mg of Xanax 30 minutes before I go to bed, which is usually around midnight. I sometimes still have to get up around 4 AM and walk the floor for about 30 minutes to an hour. I go back to bed and I can usually get some sleep, but I am kicking and feel miserable and finally have to get up around 8 AM because my RLS is so bad. I feel exhausted a lot of the time. I can never lie down and rest during the day because my RLS will usually start, especially if I am really tired.

 

Do you have any suggestions for me? I have been on the Neurontin for 2 years. I am afraid it will stop working. The only time I really got relief from RLS was when my dentist put me on Vicodin for a few days for a dental problem. I took it every 4 hours and it was great. I had no problems at all. My doctor will only give me 30 Vicodin a month. If I could get more I could take it in the night and not have to suffer the way I do. This problem has really almost ruined my life. It takes so much energy to try to function normally.

 

I am 66 years old and I am seriously thinking about donating my brain to the RLS Foundation. It scares me to think about it, but I would really like to help others. My grandchildren are already starting to get RLS.

 

Thank you so much for all the help you give. You are truly sent by God.

Medical Reply

Requip and Mirapex are the best drugs for the majority of RLS patients.  Like any disease, not all patients will respond to certain drugs.  Unfortunately, many cases of severe RLS (such as yours) do not respond to those drugs or can actually get worse due to augmentation.  Over the past few years, we have realized that about 15% of patients may get augmentation with Mirapex or Requip.
 
My recommendation for your case is to ask your doctor to switch the Vicodin to methadone.  It lasts longer and works much better for RLS.  You may need to take the methadone 2-3 times per day to get full relief (which is what you should except from current RLS therapy).
 
You can take drug holidays from the methadone (2 days off every few weeks) or try to alternate with Ultram (tramadol) which should reduce the chance of addiction/tolerance.

Sent: Thursday, January 27, 2005 8:26 AM
Subject: Need Help with Daytime RLS
 
I am a 58 year old male and have a genetic predisposition to RLS.  Over the last 6 years my symptoms have become more acute.  I now have restless leg day and night.  I have taken the usual RLS drug regimen: quinine, Sinemet, clonazepam, diazepam and monthly B-12 shots for pernicious anemia.  None of these treatments seemed to help - Sinemet resulted in augmentation and rebound, and the benzodiazepines turned me into a walking zombie.  The B-12 has no noticeable effect. 
 
For the last 3 years I have been taking hydrocodone which has helped.  However, for over a year now I have had daytime symptoms and have been taking the hydrocodone throughout the day to relieve the symptoms.   I am taking 30-35mg. a day but am concerned about building up a tolerance to the drug.  I have tried taking tramadol for a "drug holiday" but have had problems with urinary retention.  
 
Last week my doctor placed me on a Mirapex, one .125mg. before bedtime.  It works great.  I've been sleeping all night and wake up refreshed.  However, upon waking the RLS symptoms return with a vengeance.  I tried taking the Mirapex during the day but end up sleepy and in a daze all day.  Also, the drug wears off within 4-5 hours and it seems as if the RLS symptoms become even more severe.   
 
Since both hydrocodone and Mirapex make me groggy, are there any any other drugs available that won't cause daytime sleepiness?  Does a person adjust to the Mirapex over time so that daytime sleepiness eventually diminishes?  Can a low dose of Mirapex (.125 mg) cause augmentation?   Any help you could provide would be much appreciated.
 
Marvin 

Medical Reply 

Quinine is not recommended for RLS at all and the other drugs, Sinemet, diazepam and clonazepam are not very good drugs for this disorder (they were used in the past but are no longer considered first line choices for RLS).
 
Mirapex is a very good drug for RLS but it seems that you may be getting rebound (worsening of RLS as the drug wears off).   It is very unusual for such a low dose of Mirapex to cause augmentation or rebound. It might be worth trying a higher dose of Mirapex (check with your own doctor first) and see if this works better or worse.   Requip may also work better, although it is also a dopamine agonist drug like Mirapex.
 
Methadone would be a better choice than Vicodin (hydrocodone) and the methadone does not contain acetaminophen (Tylenol) which is not needed for RLS.

Sent: Saturday, January 29, 2005 11:03 AM
Subject: Could this be something else?

I have been suffering with what I have considered to be RLS for 6-8 years.  Where in the past it has been more of an annoyance than a problem, in the last 6+ months this has been escalating to be a real disturbance in my life.   Thankfully I've never had a problem with sleep disturbance from this -- laying down is the most reliable way that I can relieve my symptoms.

Originally I only had problems in the evening when I sat down to relax and watch TV and it seemed to only effect my legs.  Now I often start having trouble early in the day while at work and the symptoms encompass my whole body.  It's characterized by an extreme irritability -- physical as well as mental/emotional.  My arm rubbing on the desk can drive me crazy or the cat wanting to sit on my lap or cuddle next to me on the couch. 

The smallest things turn into major irritations.  I'll get up from my desk and walk around with my hands, arms and whole upper body clenched trying to get some relief.  I'll go for a couple weeks with really bad symptoms and then things settle down somewhat.

I've tried Mirapex. My doctor originally prescribed taking .125 mg 4 times per day.  This didn't seem to help and disturbed my sleep so I stopped.  I'm trying again with just taking the pills earlier in the day and staying away from taking them in the evening.  It's only been a couple days, but I don't see any signs that this is helping.

Before I felt that my symptoms were classic RLS, albeit more a daytime version.  Now I'm not so sure.  Is there something else that this could be?  If Mirapex doesn't have any effect, is there much chance that Requip will?

Thanks for any help you can give,
Janet

Medical Reply 

You may need a higher dose of Mirapex.  This can be increased by .125 mg every 3-7 days (under the supervision of your doctor) until symptoms have improved.  If Mirapex does not help, it is possible that Requip may benefit your problem.
 
Neurontin may also be helpful if it does not cause problems with daytime sleepiness.  Pain killers (narcotics or tramadol) may be another option.

If you respond to this therapy then you it is much more likely that you have RLS.


Sent: Saturday, January 29, 2005 12:39 PM
Subject: Ritalin and RLS

I have RLS and I try many meds for that disease and depression. Prozac and most of the SSRI exacerbate RLS. Wellbutrin does not. I'm now taking Ritalin for concentration/depression, along with bupropion (Wellbutrin) and I notice an increase in RLS in evening.

I don't understand why there is an increase since Ritalin does not decrease dopamine concentration. I know that caffeine exacerbate RLS so maybe Ritalin (similar to caffeine) do the same. Do you have some information about Ritalin (or Adderall) and RLS and can I mix those stimulants with Mirapex ?

C.L.

Medical Reply 

Most stimulants will make RLS worse.  Not much is known about Ritalin and RLS, but anecdotal reports are similar to yours. Mirapex   There are known interactions between Ritalin and Mirapex so these drugs can be taken together.

Sent: Saturday, January 29, 2005 8:54 PM
Subject: RLS better with Mirapex.

I sure do know about RLS.  I first started about 20 years ago.  My episodes of legs wanting to move were very infrequent in the beginning.  As the years have gone by they have become worse and worse.  It is now a more serious condition.  When I first talked to my doctor about the condition, he had not even heard of it.  I took a clipping of the RLS article to him on an other office visit and asked him to read it and than suggest a medication for me to take.

 
My doctor prescribed Neurontin.  It did not always give me relief, but I was able to be RLS free for periods at a time. This went on for 5 or 6 years until the condition became noticeable more frequent.  My doctor sent me to a Neurologist, who to my surprise said she did know of RLS.  She prescribed Mirapex.  That was about 8 years ago.  I started by taking one pill a day 0.125mgs.  Later as the condition became more frequent and more intense, the dosage was increased to 2 a day, same strength, and then to three a day.
 
In the last 2 years the RLS has not just effected my legs, but at times it also hits my arms. On rare occasions it seems that it has also made my whole body feel restless.  My neurologist increased my dosage and strength to 0.25mgs, three times a day.  I am lucky that on occasion when the pills lose their effectiveness, although the agitation takes place in the evening, when I go to bed, it subsides.
 
Twice in all these years I have had to take a holiday.  The first time that happened, my regular doctor took me completely off the Mirapex and put me on Requip ( a fairly new medication).  That gave me the jitters and shakes and loss of two nights sleep.
I immediately stopped taking it and went back on Mirapex.  The reprieve was enough to fool my brain into thinking I was drug free.
 
The second time was just a short time ago.  This time I instructed my doctor to let me take a lower strength and only 2 pills a day for one week.  I did have mild bouts of RLS during this time, but as soon as I went back to the higher dose and strength, my body has readjusted to it.
 
Mirapex works wonders for me.  I am 80 years old, and still able to  work.  I have had RLS for over 20 years.  Without Mirapex, I would be a basket case.  RLS is one horrible condition.
 
Sincerely,
Mary

Medical Reply 

RLS can vary with good days and bad days.  Sometimes stopping the medication fro a few days does help.  If you do have problems with Mirapex in the future, there are other drugs that will help you.

Sent: Sunday, January 30, 2005 12:02 PM
Subject: PLMD causing leg injuries?
 
I have severe PLMD and the arousals at night are sufficiently frequent and violent to cause injuries to one of my legs. I sleep mainly on my right side and the injuries are to my left knee and outer thigh. I notice that my leg pain is worst in the morning. I now have significant fluid swelling in the area around and above my kneecap though little direct pain in the joint. The thigh pain is in the area of the iliotibial band and seems to run along this.

Do you have any suggestions as to how I might limit the damage caused by the leg movements at night? I had considered that the left leg problems might be caused by the drop towards the mattress after extending forwards, the leg twisting as it does so, affecting both the hip and the knee. I have been thinking of sleeping with a cushion between my legs to see if that helps. Any suggestions welcomed.

David,

Ireland

Medical Reply 

You might be able to devise a cushion system with a Velcro band that may help your leg kicking problem.  Mirapex or Requip taken before bed might also help take care of your leg kicking in general.







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