Patient letters on RLS symptoms and remedies- Page 61

 

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: Monday, July 11, 2005 1:24 PM
Subject: Prozac (fluoxetine) interference with RLS?
 
HELP!!!  I've been suffering from RLS (diagnosed, anyway) for about a year.  I've taken Sinemet for it but am experiencing a return of my symptoms.  My doctor is switching me to Klonopin to see if that helps. 
 
Now the real question: I've also been taking fluoxetine for PMDD (premenstrual dysphoric disorder) for about the same amount of time that the RLS symptoms have been nasty.  Is there a correlation between the two meds?
 
Please advise ASAP, I don't know which is worse, the PMDD or the RLS!
 
Regards,
Sue T.

Medical Reply

Prozac (fluoxetine) can worsen RLS so it is quite likely that this drug may be causing part of the RLS worsening.  It is much more likely that the drug Sinemet is causing the bulk of the increase in RLS symptoms as this drug is well known to cause augmentation of RLS symptoms.
 
Although Klonopin is listed in the older literature as one of the drugs of choice for RLS, it works mainly to help RLS patients fall asleep. It has a very long half-life and often causes daytime sleepiness the next day. 
 
A much better choice is to switch the Sinemet to Requip or Mirapex which are very effective RLS drugs and have less chance of causing augmentation or other problems.  These drugs should control your RLS and even let you stay on Prozac for your PMDD.

Sent: Thursday, July 14, 2005 9:30 PM
Subject: Tempur-Pedic mattress for RLS?

My wife has RLS and was taking gabapentin(neurontin)300mg at bedtime.  It worked well but now we are trying to have a baby and was told that she needed to stop taking (which she did) but now she is back having trouble sleeping again.  Would buying a Tempur-Pedic adjustable bed help?  What else can she do that can help? 

Jody

Medical Reply

An adjustable Tempur-Pedic type bed only helps the bed partner from being bothered by the leg kicks (PLMS) that are so common with RLS patients.  There are two RLS medications which are safe (category B) for use in pregnancy.  They are methadone and Dostinex.  Most RLS specialists should know how to use these drugs but it is likely that most other doctors will not feel comfortable prescribing them.

Sent: Friday, July 15, 2005 11:19 AM
Subject: Drug holiday from Mirapex?

I was diagnosed about 5 or 6 years ago.  I started with one .25 mg Mirapex before bed.  I am now up to four .25 mg Mirapex (1 at noon, 1 in the early evening, and 2 at bedtime) and three 300 mg Neurontin pills a day (1 every 8 hours), and am still having symptoms in the afternoons, and it just get worse as the day goes on.  Iím losing a lot of sleep!   

In the past few months, I took Tramadol, Prednisone and Vicodin for some unrelated conditions, and my legs were better when I was taking them.  My question is, when you take a drug holiday, can I take something else in itís place, such as Tramadol or Prednisone, or do I just have to suffer through it? 

I cannot imagine going without any medication, it would be non-stop torture and total sleep deprivation for however long Iím off my meds.  And how long should a drug holiday be for the meds Iím on?  Any other suggestions? 

Iíve already cut out caffeine and try to keep my sugar down, and I try to get moderate amounts of exercise in the evening (both too little and too much seem to make it worse).  Hot showers and heating pads donít seem to have any effect. 

Kathy,
Fairborn, OH

Medical Reply

It sounds as if you are suffering from augmentation from Mirapex.  As you increase the dose, symptoms will occur earlier in the day and increase in intensity.  The best thing to do is go off of Mirapex.  Both the tramadol (Ultram) and Vicodin help RLS and you can use either of these to treat your RLS while off Mirapex.

Instead of restarting Mirapex it might be a better idea to use Requip instead.  Try to keep the dose as low as possible.  It should be helpful to use tramadol or Vicodin (you can even alternate days on these medications) in low dose to supplement Requip which should help keep its dose on the lower end. The prednisone does nothing for RLS.  It was the pain medications that you took along with prednisone that helped your RLS.


Sent: Friday, July 15, 2005 12:34 PM
Subject: RLS & PLMD treatment?

I'm very grateful to find your site and expertise, and fellow unwilling denizens of the night.  I am a 51 year old female, and have been experiencing RLS symptoms for 2-3 years, but have been troubled by unexplained fatigue for at least 5 years. 

I just had the sleep study done which showed "455 limb movements were recorded of which 24 caused arousals per hour", confirming what I suspected, that I have PLMD also and that is probably the cause of the fatigue.   I also have hepatitis C (stage 1-2) and so have put off trying any medications until recently when things escalated and I just couldn't cope anymore. 

My doctor prescribed Amitriptyline (10 mg) and I tried it, even though I had read it wasn't a treatment of choice, and it made the symptoms worse.  My doctor isn't an expert on these problems and I was hoping you could recommend which drugs work best on both RLS/PLMD, which would at the same time be least risky for my liver? 

KC

Medical Reply

The liver disease should not be a big problem.  Requip is currently the only drug approved for treating RLS but it is metabolized in the liver.  That does not mean that it will hurt the liver, only that smaller doses may go a longer way as the drug does not get broken down very quickly.  If your liver function is reasonable and you are using moderate doses of the drug there should be no major difficulties using this very effective RLS medication.
 
Mirapex is quite similar to Requip but it is not yet FDA approved for RLS.  It is metabolized in the kidneys so there may even less concern with this drug.
 
Amitriptyline (Elavil) most often worsens RLS as you have already found.  It is not recommended for use in RLS patients.

Sent: Monday, July 18, 2005 10:06 AM
Subject: Permax not helping RLS.
 
I am a 49 year old male and I have been diagnosed with RLS for the last ten years.  I have tried several medications over the years and like the others I have had different successes and failures.  My problem was aggravated by the fact that the FAA kept changing the approved drugs which forced me to try different medications almost every one to two years. 

The medication that is now allowed is Parlodel and it really doesn't work very well.  I take three 2.5 mg. tablets each night but I find that I still need an additional 1/2 to 1  .25 mg. tablet of Permax to sleep.  I have tried 4 tablets of Parlodel, but it still does not work that well.  At this point I am ready to forget my flying hobby and take whatever medication works best. 

I have been trying Permax again, but I am having to take 1 1/2 to 2 tablets now when five years ago 1/2 would work.  I have also tried taking a 1/4 tablet of Vicodin 5/500, and this does let me sleep deeper and I love that, but before I actually get to sleep I am wide awake. Why does Vicodin stimulate me now, it didn't five years ago?  

Permax seems to work pretty well but I don't like the sick felling it gives me before bed and the fact that eating late or too much chicken or spicy food eliminates it so effectiveness.  I also wonder if it causes depression.   Which medication would you recommend at this time. 

Thank you so much for this service,  I don't know what people with this condition did hundreds of years ago, although I have a pretty good guess.

Steve F.

Medical Reply

The best two best RLS medications are Requip and Mirapex but as they have occasionally been linked with daytime sleepiness they are likely on the FAA banned list.  It might be time to forget about flying and change to one of these
 
I am not sure why Vicodin would change its side effect it you so drastically but that does happen at times.  Methadone works even better and may or may not have the same side effect of stimulation. 
 
There is no literature on dopamine agonists in general or Permax in specific causing depression.

Sent: Tuesday, July 19, 2005 7:17 AM
Subject: Vinegar for treating RLS
 
I have had RLS for 30 years. I haven't tried all those drugs and over the counter meds. but I have tried apple cider vinegar.  Don't take it by mouth, put it in a spray bottle and get in the shower or tub and saturate your legs well. Your legs will feel like they weigh a ton. They wont itch or jerk and you will fall asleep a lot faster. That annoying drawing and jerking feeling goes away.

I knit at a sock mill and I walk for 12 hours a day.  Don't tell me that circulation is a problem cause I walk so much.  When I get in the car for a 20 minute drive home, I feel like I could kick out the windshield. I am thinking about taking some vinegar along with me so I can spray it on my legs before traveling home.

People without RLS don't understand what you are going through, and would laugh at the things you do for relief. But let them get it and see how they feel. its bad but I'd rather have it than a life threatening disease. do what you got to do that's all I can say. 

So give the vinegar a try. it wont kill you but you may smell like a pickle factory. So what, its your life and you have to deal with it. please let me know if this works for you. its simple and its very cheap.

I am praying that this will help you.
Gale


Sent: Thursday, July 21, 2005 6:54 AM
Subject: 1. surgery 2.Paramol 3. Mirapex/Requip

1.     I am having vascular surgery in with an epidural in a couple of days.  Currently taking 0.125 Mirapex at 4:30 pm and before bed, I do have earlier onset of RLS (any time after noon) if I am sitting for more than 20 minutes.  I am wondering if I should prepare for the epidural by taking a regular (or increased?) dose of Mirapex an hour before surgery?

2.     While in the UK the pharmacist gave me Paramolģ because I ran out of Aleveģ for which a prescription is required there.  Paramolģ contains Dihydrocodeine Tartrate 7.46 mg.  Would this be effective for RLS? What is the equivalent does of a medication here?  I have insomnia with Mirapex and Requip so also take Ambien 10 mg. but would prefer not to. 

3.     Is it possible to switch from Mirapex to Requip say Ė from one day to the next?  (I havenít tried Requip for a while and suspect I may be getting rebound from Ambien; and I was wondering if it would still cause insomnia as does Mirapex.)

I am 61 and have had RLS symptoms for 15 years or so as did my mother, grandmotherÖ

Thank you for your good work,
W.

Medical Reply

  1. If you are allowed to take oral medications (many types of surgery demand no oral intake for at least 12 hours before the surgery) then it would be very reasonable to take your usual dose of Mirapex 1-2 hours before the surgery.  If you can't take oral medication before surgery or if you have problems despite taking the Mirapex prior to surgery then an injection of a narcotic (such as Demerol) during the surgery should quickly resolve any problems with RLS.

  2. Dihydrocodeine is about twice as potent as codeine.  Therefore the equivalent drug here would be Tylenol with codeine #1 (contains 15 mg of codeine).  Low dose hydrocodone 2.5 to 5 mg (Vicodin or Lortab) would be a better choice.  Ultram (tramadol), a non-narcotic pain killer often works as well and has an even lower addictive potential.

     

  3. Generally, one should be able to change from Mirapex to Requip from one day to another.  The equivalent dose of Requip is twice that of Mirapex.  For example if you were taking .5 mg of Mirapex you would have to substitute 1 mg of Requip.

Sent: Thursday, July 21, 2005 6:58 PM
Subject: Can I mix Requip with Neurontin or Lunesta?
 
Thanks for this page.  It has been of great interest and has answered many of my questions which were asked by others.
 
I was put on Neurontin eight months ago and loved it.  With 1200 mg a night I was sleeping very well for a change.  About three months ago I noticed that I was waking up as early as 4 am and couldn't get back to sleep.  I was put on Mirapex (2 at night) along with Neurontin (dropped to 600 mg).  This didn't make much difference.  When the doctor added Mirapex during the day, once in the morning and again at noon, I changed doctors.  I hated how I was feeling.  I didn't even have the patience to look at the newspaper in the morning, my arms felt very frustrated (if that is possible) and weak.
 
I am on Requip as of three days ago.  I had to adjust my dosage  faster than the started package since my legs were driving me crazy the past two nights.  I added a 600 mg of Neurontin last night so I could get some sleep, five hours in two nights is not enough.  (I did manage to get five hours last night)
 
Can Requip be taken with Neurontin or would it be better with Lunesta or neither?
 
Bonnie, age 56,
Indiana

Medical Reply

Requip can be taken with Neurontin and Lunesta.  If this combination is not helping you, then you should discuss with your doctor about adding a painkiller (a narcotic or tramadol) at low dose which may be very helpful for your RLS symptoms.

Sent: Thursday, July 21, 2005 8:02 PM
Subject: Xanax vs. Lunesta

I was diagnosed with RLS approximately 9 years ago. I have taken 1.5mg of Xanax at bed time ever since with great success. I've completed 3 college degrees since due to the fact the I'm well rested during the day and can really focus. I worry, however, about being addicted to Xanax. I've skipped a few doses a few times over the years, but it was always a terrible experience. I realize a drug holiday would help with the addiction part.

Also, I've not built up any resistance to Xanax that I'm aware of over the past 9 years. Anyway, would Lunesta be a better choice since it's not suppose to be as addicting as other benzodiazepines? From a general perspective, could it provide just as good of a nights sleep as Xanax? I tried switching to Ambien once, but it didn't keep me asleep long enough, which resulted in some pretty exhausting days.

Finally, what dose of Lunesta would equal 1.5mg of Xanax? Thanks so much for your time, advice and the service that you provide.

Mike

Medical Reply

You have a few options.  As you have not yet developed tolerance to the drug and seem to be doing well you might just continue on the same dose indefinitely.  Switching to Lunesta may or may not be helpful.  You might sleep well with Lunesta at 2 or 3 mg but you cannot really decide on your maintenance dose until you have been successfully weaned of off Xanax.  While you are in the withdrawal period higher doses of replacement drugs will be needed to treat the withdrawal effects.
 
The best way to treat your RLS would be to take Requip or Mirapex 1-2 hours before bedtime and eliminate your RLS symptoms.  You could then use Xanax or Lunesta on an as needed basis only on those nights when you have insomnia problems.
 
Remember, if you do go off of Xanax, it should be tapered very slowly to reduce withdrawal problems which include problems such as withdrawal seizures.

Sent: Friday, July 22, 2005 1:21 AM
Subject: drug holiday Neurontin
 
I have severe RLS and am on Requip, Neurontin and Tramadol during daytime. For the past year the addition of Neurontin has helped me a lot. I gradually had to increase it to 1200 mg's and I can't up it anymore because of serious energy-problems.

My question is: is it possible to take a drug holiday from Neurontin for a few weeks and will it work, generally speaking of course, again?  Or should I try another drug in the same class?  During the drug holiday I could use a narcotic I suppose.

 
Corrie A.,
The Netherlands

Medical Reply

We often see drugs becoming effective after a short drug holiday from the drug.  This is true for benzodiazepines, narcotics and with dopamine agonists (Requip and Mirapex) when used for RLS.  I am not aware of the same phenomenon working for the anticonvulsant drugs.
 
It might be helpful to change to another anticonvulsant but most of them tend to cause sleepiness when therapeutic doses are achieved.  It might be better to lower the dose of Neurontin to more tolerable doses (or eliminate it completely) and add a narcotic.  You can then alternate the narcotic (my favorite for severe RLS is methadone) with tramadol.  The odds are that this strategy would work better for you.

Sent: Saturday, July 23, 2005 7:21 AM
Subject: Chemo makes RLS worse?
 
I've had RLS all my life but I've been able to more or less cope with it. (When I think about it, I realize that it has affected my life quite a bit. For example, I avoid taking jobs where I would have to attend meetings a lot.) 

Now however, I started chemo for ovarian cancer and one of the drugs, Paclitaxil (Taxol) caused sharp pain and twitches in my nerves for a couple of days. The symptoms were really bad for those two days. The first day there were stabbing pains that lasted for 2 or 3 seconds with a break of maybe 10 seconds before the next one. The next day, the pain was much reduced but the "stabs" of nerve stimulation were constant and all over the place. I slept hardly at all that night. It finally got better, but since then, my RLS is much worse than it's ever been. I get "twitchy" and have to get up and walk around many times per day. My shins ache quite a bit. I'm not sure if it's from all the walking or left over from the taxol.

Do you have any suggestions of how to counteract this? During the worst of the pains, I was considering canceling the chemo and trying to kick the cancer on my own. I don't think my oncologist will be very understanding or sympathetic. The chemo nurses didn't have much to suggest when I called them during the worst of it.

Thank you for your time.

 
Ladonna W.
MO

Medical Reply

Taxol has been associated with peripheral neuropathy problems.  This drug can irritate the nerve endings causing numbness and tingling or actual pain similar to what you are describing.  This also gives the drug the potential to worsen RLS.
 
Since your RLS is now in high gear and you should not stop taking Taxol for your cancer, the best idea is to treat your RLS with Requip or Mirapex.  Neurontin may be another good choice as it usually works well for neuropathy problems and may also help RLS.

Sent: Saturday, July 23, 2005 2:12 PM
Subject: HELP for severe RLS?

I have several mental problems and have had RLS for many years, but over time it has become unbearable.  It is now not just at night, but is also all day.  My psychiatrist prescribed Gabitril to help. It has not helped at all.  I will literally lay there for hours moving my legs, crying, and will eventually get up and walk for hours.  I am also taking Zanaflex for Fibromyalgia and Epstein Barr, so I am constantly running into the wall and hitting my head on door frames when walking at night. 

I feel awful during the day and never go anywhere.  It has now gotten so bad that I have become suicidal at bedtime. I am so sleepy, but my legs won't stop.  I get at the most 3 hours of sleep a night and have become severely agitated, very dark under my eyes, and so depressed. 

Any advice?
Tracie

Medical Reply

First have your doctor prescribe Requip or Mirapex.  If they do not work or you have tried them in the past, then you should start on a narcotic.  For severe RLS as you are describing, methadone is usually very effective.

Sent: Saturday, July 23, 2005 5:07 PM
Subject: New options please!!!


I am new to this site - have read it zillions of times but this is the first time I'm posting. Have had SEVERE restless legs for over 7 years now of which I treated with narcotics - Vicodin - alternating with Ultram - which they argue if it's a narcotic or not. Have tried Mirapex, Sinemet, Prozac, Wellbutrin, Effexor, Neurontin, Elavil (one neurologist insists this works - others say absolutely not!), Valium, Ativan, OxyContin (went off that one after all of the news of drugstores being robbed), quinine, Paxil, vitamin B, vitamin E, iron, diet alterations and many forms of exercise.

I don't like the idea of staying on the narcotics as the breaks you need from them are brutal to go through. I am trying desperately to find a drug that will stop the restless legs/arms that I have not only in the night but the day as well. I'm not that old either (43) and I don't see how on earth I'm suppose to stay with just a narcotic all the rest of my days!

The dopamine has a host of side effects.  Mainly I feel TERRIBLE on them!  The nightmares are horrible to the point where I wake 4 or 5 times a night with them and then the legs are back so I'm up!  I also can't take them in the day because even when I tried the Sinemet with the Provigil. NOTHING keeps me awake and I'd like to be awake at least some of my days! Also when they wear off the legs return with a vengeance. Antidepressants just simply don't work.  Quinine doesn't work.  Neurontin, forget it!  I'm in the twighlight zone with that one.

Had a family doctor who let me try the above medications but he left the area so since then I've been to 3 different Neurologist and it is very frustrating to hear dopamine, dopamine, dopamine enhancers, neurotic, simile - they sound like a broken record - find one that you can "live with" the side effects!!! What a cop out!!! All say Vicodin and other narcotics are very effective but are a last resort - I beg to differ...
Hasn't anyone taken a good look at posts from RLS suffers (I've seen these on other sites) that state Ritalin works, Adderall works and there is a lot of information online that notes pediatric doctors have found that Ritalin works for children with "growing pains" aka RLS.

I got ONE neurologist (not listed on this site) to let me try Provigil (a MILDER stimulant approved for narcolepsy - but a stimulant all the same) and it was like a light when on in my life.  I was able to cut back the narcotics - where they used to work for only 3 hour spans, they now work for 6 to 8.
While taking this the restless legs remain quiet during these times when I know the Vicodin would not hold them this long - I've also been able to sleep soundly because it works the same at enhancing the Vicodin dosage at night. But when I tried to cut Vicodin out completely the Provigil did not stop an "episode" form stopping like a Vicodin can....yet I cannot deny the fact that Provigil has to be doing something quite substantial!
I've seen numerous posts on other restless leg sites that state Ritalin and Adderall can stop the sensation as quickly as Vicodin.
I'd like to know if anyone has an opinion on this other classification of drugs???

With the success I've had with the Provigil - I'm wondering if maybe this is another direction we can go in for a treatment for those of us who feel like we've been battered by dopamine agonists, benzodiazepines, and anti-seizure medications.  I resent the adds now for Requip - and restless legs - like it's a miracle cure!!! What a joke!! All doctors are in agreement we've got no one certain cure - why then are we beating the same old drugs (one version or another of them) into the ground???

I found it so frustrating to go to people who are suppose to be on the cutting edge of treatments for this condition and find that although they prescribe so many dopamine agonists. As an "off label use",  they will not try any "off label" uses for other drugs that may just give someone like me.  I'm sure many others out there a little HOPE for a change!

Any input on a person like me?  Oh, had the sleep studies, the EEG's or EKG's - whatever they are and there is nothing else - do have Lupus...

Medical Reply

First, let me answer your question about why doctors keep recommending dopamine agonists. These drugs help about more than 80% of RLS patients. At the doses generally used to treat RLS symptoms most patients have few if any significant side effects. You do hear quite a lot about its side effects and lack of effectiveness on the internet message boards and forums but those messages are written by the minority who have not done well with these drugs.

Your perspective on RLS is biased by your severe RLS and your individual intolerance of dopamine agonists. There are lots of others who are in your same shoes (20% of over 12-25 million RLS patients in the USA are an awful lot of people) but the majority of RLS sufferers do not share your problem. From my perspective, the dopamine agonists are really great drugs for most (but clearly not all) RLS sufferers). You cannot even imagine how many RLS patients get complete relief with only 1/2 to 1 or 2 tablets of the smallest dose of these drugs and never have any side effects.

The DTC (direct to consumer) adds on TV have actually done a great service for many RLS sufferers. Many of them previously did not even know the crazy symptoms that they have been experiencing even had a name let alone a possible treatment. Not all these patients will benefit from the advertised drug but most of them probably will do very well. There is no cure for RLS (the adds do not specify a cure but rather a treatment for the symptoms) but for the vast majority of the uncomplicated RLS patients that I see, the dopamine agonists have definitely been like a miracle.

However, patients with very severe RLS or others who have side effects with the dopamine agonists (called the refractory RLS patients) are a completely different story. These patients make up a large part of my RLS practice since the average patient that I see has often seen several other doctors (including neurologists and other RLS specialists) before seeing me. I therefore have lots of patients who cannot take dopamine drugs or do not benefit from them. For those patients (like yourself) we have several other treatments.

There is not much information on the use of stimulant medication for RLS. This has not been studied yet and there are no reports in the medical literature on this topic (including the use of Provigil). However, it is known that some RLS patients have benefited from stimulant medication. There are two theories on why these drugs are helpful. One is that the stimulants tend to release dopamine (yes, that dreaded drug again) which may help correct the dopamine problem of RLS. The second hypothesis is that any medication that increases alertness (which is most often decreased and being sleepy brings on RLS symptoms) should improve RLS. Whatever the actual real reason that stimulants work, they are being used by some RLS specialists and can be effective in certain individuals. However, it is hard to identify who those individuals are as there are also many RLS patients who worsen with stimulant medications. This is clearly a very complex issue that needs more investigation and research.

I can understand your frustration with the neurologists and other RLS specialists. They are touting dopamine agonists for a very good reason as I have detailed above. Most patients with milder side effects do have these abate within a short time period so there advice is not completely wrong. In your case, I would not recommend using these drugs as you will likely never adapt to your side effects. Most of the doctors who treat RLS are just learning about the correct way to treat this disease. There has been very little education on RLS until now and we need more time to get everyone up to speed (I am one of the specialists who is busy teaching the other doctors on how to treat RLS). It will probably take several years and several seminars until the current crop of doctors learn how to treat the tougher RLS cases like yours.

What I would recommend to do in your case is to take a narcotic (my favorite is methadone as it works the best, lasts the longest and has the least side effects for most) on a regular basis. If you keep the dose at a low level there should be little concern about addiction or tolerance. I would also recommend that you continue the Provigil (this is actually the safest stimulant with very few side effects) which should enable you to keep your narcotic dose at a lower level. Discuss this treatment with your doctor as it has an excellent chance of keeping your RLS symptoms from troubling you.


Sent: Saturday, June 24, 2006 2:16 AM
Subject: RLS while on medications for depression?

I had been diagnosed with RLS years ago.  I am now 45yrs. old and for the first time in years I have started having RLS again.  I had forgotten just how bad it can be until dealing with again recently.  Years ago I was diagnosed with a sleeping disorder while have RLS and was told Ambien would help.  The Ambien worked great.  Within the past month I had stopped taking the Ambien due to the cost of the medicine.  Can't afford it anymore.  

I was also put on Lexapro 20mg. for depression and most recently Seroquel also for bi-polar.  The Seroquel seems to make me sleep, so  I stopped taking the Ambien, but now within the past month I now have the RLS again!! Is there any advise that you can give me.  It has to be either that I need to take Ambien again or talk with doctor  about Seroquel or Lexapro witch really brought me out of a deep depression.

Nancy M.

Medical Reply

It is very likely that your RLS has returned because of the Lexapro or Seroquel (or even due to both together) that you have recently started.  They both can cause RLS to worsen.  To add further trouble to your problem, you stopped the Ambien that may have been able to put you to sleep so that your RLS might not prevent that from happening.
 
Various options exist for your current predicament.  You can continue to take your current medications and add an RLS drug such as Requip to control your RLS symptoms.  Other options include changing the Lexapro to a more RLS friendly antidepressant drug such as Wellbutrin, trazodone or desipramine.  These drugs may or may not work as well as Lexapro.  Only trial and error can tell us if this is the correct choice for you.
 
There are no RLS friendly drugs that are indicated for bipolar disorder.  It would likely be best not to change the Seroquel if it is working well for you. 
 
Although Ambien is somewhat expensive it may be helpful to use this drug when you can't sleep.

Sent: Monday, July 25, 2005 9:33 PM
Subject: RLS only better with Vicodin?


I have had RLS most of my life. I can remember instances as a child needing to "shake the leg" but could never explain my "condition" to anyone. In my 20's and 30's I noticed that if I got overtired it would be really bad getting to sleep and again have to shake the leg. However now that I am in my 40's it drives me to complete distraction. It is in my left leg and into my left hand, as I type I am fighting the urge to wiggle.

Klonopin had not helped me. I take Vicodin for severe low back pain and that does indeed do the trick especially when I have been awoken by this and I am forced out of my bed every night even after taking sleep medications. I take 1/2 to 1 full pill of the Vicodin and it calms all the limbs.  I feel at peace and as if someone lifted my pain. The double edge sword is the Vicodin is for my back pain and I end up using it for my RLS, hence running out before months end. I also had a gastric bypass so I am unable to take Motrin or anything from the analgesic family.

My general practitioner is wondering if my RLS which includes the jerking while I am asleep besides the need to move around during wakeful hours is connected to my low back. I have two bulging disks in my low back that are on the brink of needing surgery. These are questions I will be asking the neurosurgeon.

Unhappy here in Upland,
Jenny

Medical Reply

Narcotics work great for RLS symptoms, especially when other medications fail. However, you should ask your GP to start you on Requip (he can get starter packs from his GSK drug representative now that this drug is FDA approved for RLS). It is very likely that a small dose of this drug will relieve your RLS symptoms adequately enough so that you will need a narcotic only rarely.

In addition, you can try tramadol (Ultram) for both your RLS (when the Requip does not fully cover it) and back symptoms. It is not a narcotic or anti-inflammatory drug (like Motrin) that has a very low addiction potential and it can even be alternated with your Vicodin.


Sent: Tuesday, July 26, 2005 11:36 AM
Subject: Need Help

I am writing to you to see if you can help me. I am 26 years old and I have RLS. I just recently saw an article about this and I almost cried. For years I thought this was all in my head. I also recently found out that my father also had it. I have had it for almost 10 years now and have been fighting it since. Just the other night I fought the worst battle of it. I was in convulsions trying to get it to stop and it was more painful than it has ever been. I need to get some kind of relief.

I saw in the article that some meds given to Parkinson's patients work and I was wondering if Parkinson's is also a genetic thing because my grandpa is suffering now from Parkinson's. Are these two related??

Please help with answers!!
Whitney A.

Medical Reply

Having RLS does not put you at any more risk of getting Parkinson's disease. Although both diseases respond to dopamine type drugs (but much higher doses are needed to treat Parkinson's disease) there is really no other connection between the two diseases. Parkinson's disease patients may have a higher incidence of RLS like symptoms or actual RLS but it does not work the other way (RLS patients do not have more risk of Parkinson's disease or of PD symptoms).

You do not have to suffer. Get your doctor to start you on Requip and you have an excellent chance of relieving all your RLS symptoms. If that does not help, there are lots of other treatments still available.

Sent: Wednesday, July 27, 2005 6:41 AM
Subject: PLMD

Although I have had RLS/PLMD for years, it has only become a serious issue for me over the past year and a half. So far I have tried Klonopin, worked about a week, Neurontin, never worked, Mirapex, stopped the leg contractions but left me unable to sleep, and am currently on Requip and Ambien. The Requip has worked very well but over the last 9 months, my doctor has had to increase the dose, approximately every three months, for it to remain effective.

I am 48 now, what quality of life will I have once I have been thru all of the drugs? I have heard that deep brain stimulation has been done (but rarely) in RLS/PLMD sufferers with favorable results. Are there any positives as far as future treatment for this disorder?

I would have to say I consider it life threatening disorder as I read all too often that others have considered suicide as an option.

Thanks,
CGB

Medical Reply

I have never heard of deep brain stimulation being used as a therapy for RLS or PLMD. There were a several patients (11 out of 195) who developed RLS after deep brain stimulation for Parkinson's disease in one study ( Neurology 2004 Dec 28;63(12):2410-2 ).

Almost all RLS patients can get relief from their symptoms with currently available therapy. You should not despair as with proper care you should continue to do fine for many years to come. New therapies are being developed that should take help you in the future if the current ones no longer work (and even that should not happen with correct treatment).

You may want to ask your doctor about adding a low dose of a narcotic or tramadol which may help the current drugs that you are taking to work even better on your symptoms.


Sent: Wednesday, July 27, 2005 10:55 AM
Subject: Sleeping problems with PLMD and RLS

The last time I asked you for help was in August 2003 but sleeping good at night was impossible since. I am suffering from painless but heavy PLMD. Especially at night it is terrible. You recommended to me then to get off Levodopa completely and the Sifrol (Mirapex) I took would work better. Indeed it did but my sleeping problems were soon there again, waking me up every hour or two with heavy PLMD.

A neurologist recommended to increase Sifrol (Mirapex), I did it, but it worked only a few nights. I took altogether 0,7 mg Sifrol (Mirapex) during the day and the double amount for the night. What do you mean . Should I change to Requip (Ropinirole) ? I took Sifrol (Mirapex) for a long time, since it is the only agonist which has for me no side effects at all.

My basic disease is a cerebellar ataxia, but RLS is dominant.  Because of the ataxia it is difficult to find drugs which have no influence in it worsening it for example. My neurologist recommended to take 25 to 75 mg of amitriptyline  when nothing helps. What do you think of it? I tried so many things as opioids, narcotics, carbamazepine, Baclofen and tricyclic antidepressants, all those drugs helped only for very short.

Do you have an idea how something could help me? And when I change to Requip and try it first, how should the dosage be? Could I go over 4 mg per day?

Many thanks for your answer I advance,
Michaela in Germany

Medical Reply

It sounds as if the PLMD but not the RLS is your problem now. You can still go higher on the Mirapex (up to 1.5 mg) and see if that helps. Requip is an alternative. If you change to Requip you need just take 2 times the mg (Requip 1.4 mg = Mirapex .75 mg).

Amitriptyline is not a good drug for RLS or PLMD. You might want to try gabapentin which has been found to be helpful with RLS and PLMD. Also, Ambien may be helpful to keep you asleep.


Sent: Wednesday, July 27, 2005 4:19 PM
Subject: RLS not better with Requip?

I have been on Requip since January & I'm up to 2mg nightly. I don't feel much benefit (although there was a little improvement at first). I was on dothiepine (75mg) for the pain of peripheral neuropathy (PN) but have since reduced to 25mg, I wonder if still being on it may be making the Requip ineffective?
I find that Klonopin helps a little & I also take Neurontin (for the PN) but I'm getting very little sleep. My health is further complicated by taking anti retrovirals for HIV & my PN began soon after starting them, and about a year later the RLS began, though that does seems to be running in my family. I don't know if I should be completely off the dothiepin, should increase the Requip further or try something else? I've had to change anti retrovirals many times because of the PN, I don't know what to do for the best.

Chris

Medical Reply

The Dothiepine is a tricyclic antidepressant which can worsen RLS. If you are already on Requip at 2 mg it is much less likely that increasing the dose will help, although you can increase it up to about 4 mg per day. As most RLS patients respond very well initially to Requip, your diagnosis of RLS may be somewhat in question.

Assuming that you do really have RLS, the next step might be to increase the Neurontin further (if it is not already too high and if you don't get too drowsy by doing so). If that does not work then adding a pain killer such as methadone may be very effective for treating your RLS.


Sent: Friday, July 29, 2005 5:55 AM
Subject: Severe RLS and Mirapex

I am taking Mirapex .5 three times a day along with Hydrocodone in the evening and temazepam 15 mg at bedtime. My doctor told me to add another 1/2 Mirapex but it has not helped . To get some relief in the day time I have added another Hydrocodone. Would it help to change to Requip?

I do not want to become addicted to the Hydrocodone but so far that is all that is really helping. I check your site every day I managed it for a while but now it is getting a lot worse and I am not getting more than 4 or 5 hours sleep a night and none in the daytime. RLS may not be a life-threatening disease but it sure is life altering. I am so tired all the time.

To get some relief, I sit in a warm bath for 20 minutes every evening ( sometimes in the middle of the night also) and do cross-stitch or puzzles to keep mind busy. I also do water aerobics every morning.  I am a 65 year old female and have had RLS for at least 25 years. My father also had RLS but didn't know what it was before he passed away.

TW,
Oklahoma

Medical Reply

You might try to go higher on your Mirapex but if 1 mg three time per day does not provide significantly greater relief then I would certainly not go any higher. It is not uncommon for long term such as yours to become somewhat refractory to dopamine agonists. A change to Requip however may be beneficial if increasing Mirapex does not help.

Hydrocodone (Vicodin) has only a modest effect on RLS. I would suggest a change to methadone. It is the most potent narcotic for RLS yet it is one of safest to use. Start out with a dose of 5 mg twice a day then go up or down depending on your symptoms. This should help control your RLS symptoms while you are testing the correct dose of Mirapex or Requip. You may also consider alternating tramadol (Ultram) with methadone which further increase the safety and help avoid tolerance and dependence on methadone (which if taken correctly is actually very low).

If you have not already done so, check your serum ferritin level.


Sent: Friday, July 29, 2005 6:34 AM
Subject: Requip helping RLS but causing anxiety?

Hello! I have had RLS for quite some time. Mirapex worked for a while, but two months ago my doctor switched me to Requip. It has worked absolutely great so far. I should note that I also take Lexapro and Prevacid.

My problem is that, coincidentally or not, after I started taking the Requip, I now become very easily agitated and/or anxious. Is it possible that Requip, or the combination with the other drugs is causing this? I would really appreciate some help.

Frank M.

Medical Reply

It is possible that Requip is causing some problems with anxiety. This is actually not a common problem but it can occur. The only way to know for sure would be to stop the drug for a few weeks then restart it and see if the symptoms go away then return.

It is much less likely that the anxiety is being caused by any interaction of Requip with Lexapro or Prevacid as it really has to interactions with any drugs. The Lexapro may worsen RLS. Wellbutrin, trazodone or desipramine are better choices for RLS if they help your primary mood disorder problem.


Sent: Monday, August 01, 2005 8:58 AM
Subject: RLS preventing sleep.

My husband has RLS, he also has terrible calf pain.  The only thing that gives him any relief is the vibrator.  I put that on him 15 minutes every night so he sleeps about an hour then is wide awake.  He is also a coffee drinker. I just was wondering what to do for him. Aspirin does not help. In the day time his legs are better, so he is really a day time sleeper.

Bonnie P.

Medical Reply

RLS naturally get worse in the evening then better at about 4-7 am which is why many RLS sufferers are late morning sleepers. He should discontinue coffee which tend to aggravate RLS.

Have him speak to his doctor about starting on Requip which has an excellent chance of relieving his RLS symptoms are letting him sleep normally.


Sent: Tuesday, August 02, 2005 3:11 AM
Subject: RLS and OCD


Have you ever heard of any connection between RLS and OCD?. Since poor iron metabolism is thought to be a contributing factor with RLS, I was wondering if the same problem could contribute to OCD?

Karen U.

Medical Reply

RLS causes anxiety and depression but so far I have not heard that it or iron has any link to OCD.


Sent: Tuesday, August 02, 2005 9:59 AM
Subject: RLS medication in combination with Ambien

I have been suffering with a mild case of RLS for the past 5 years or so. My identical twin brother and cousin have it much worse then I and have been on various medications a lot longer (e.g., Clonazepam, Permax, Mirapex , etc.). My wife is actually getting more disturbed than I during the night from my literally "kicking her out of the bed".

I tried Neurontin (300 mg and then 600 mg) for a while and that helped a bit but for the last year I've been on Requip (5 mg) and have been taking Ambien (10 mg) each and every night. I found that it took me literally hours to get settled and fall asleep without Ambien. My fear is that now I cannot fall asleep without going through my ritual each night - which includes Ambien.

I take the Requip, Ambien and also 40 mg of Zocor and then lie on the couch for about 1 to 2 hours where I fall asleep and get up around midnight or 1 a.m. to go up to bed. I'm groggy but able to fall asleep rather quickly. Too boot, I have a pretty severe case of sleep apnea and use a CPAP mask every night.  Yeah, I know, shoot me now. Not the most romantic thing having a mask with a six foot hose hanging off your face. But it all works and I get a pretty good night's sleep.

Is there some other medication you might suggest that I take in combination with the Requip besides Ambien?

Roger

Medical Reply

If the RLS is not preventing you from falling asleep then the insomnia may be just the usual type. In that case, Ambien does work fairly well and is safe for long term use. If you are getting a good night's sleep (as proven by waking up well rested) then I can see no reason for you to consider changing to another sleep medication other than Ambien.

You should consider following the sleep hygiene rules  which may help you modify your behavior and sleep better without resorting to medication.

If your nighttime leg kicking (PLMS) is bothering your wife, then you may consider a small increase in your Requip dose to resolve that problem.


Sent: Wednesday, August 03, 2005 9:30 AM
Subject: RLS questions.

I have had RLS for 3 years. I was wrongly discharged as having CFS due to the information I gave the neurologist but have a follow up with the neurologist on the 19th.

I have 3 questions:

1. My RBC (Red Blood Cell) count is 4.49 - is that ok ?

2. Lymphocytes 1.3 - is that ok?

3. I have resorted to a medical herbalist who thinks it is down to circulation, is this possible? The burning in my feet is the worst thing at night.

4. I have mentioned to you before that I am a fireman so my doctor will not prescribe medication. Is there any hope?

I am desperate and really appreciate your time

Neil

Medical Reply

The RBC count is only important if it represents iron deficiency anemia which is really best checked by doing a serum ferritin level. The lymphocyte count has nothing to do with RLS.

As far as we know, RLS does not seem to be a circulation problem (there is some minor evidence that suggests the circulation may have a role, but this has not come even close to being scientifically proven) and even if it was there is absolutely no proof that any herb or other natural remedy has any benefit for circulation problems.

Even though you are a fireman, you should still be still be able to take Mirapex or Requip as long as they do not cause any drowsiness (which only occurs in a small percentage of patients and then usually only at the higher doses).

 A Reply from Neil


Sent: Thursday, August 04, 2005 12:42 PM
Subject: Re: RLS

I am really grateful for your reply. Please forgive me for asking one more question:

Does magnesium play a part and what about the claims of the company "All Calm?"

Neil

Medical Reply

There is one open label study (not double blinded which is necessary to prove scientifically that a drug has an real effect) that showed some improvement in RLS symptoms and PLMS in 10 RLS patients. No other study has been done to confirm this one trial. Whether magnesium has any role in RLS remains to be determined.

The claims of the company that produces All Calm are just that, claims. Since they do not state the ingredients of their product, it is impossible to say whether there is anything in their product which has been proven to help RLS. What is known, however, is that there is as yet no over the counter product (except perhaps for iron in patients with low serum ferritin levels) that has been proven to improve RLS. Therefore, if any over the counter products claims to benefit RLS then they are doing so without any scientific basis.


Sent: Sunday, August 07, 2005 4:33 AM
Subject: PLMD Treatment Is Now Ineffective

I was diagnosed with nocturnal myoclonus or PLMD in July 1999 by a senior neurologist at Georgetown University Medical Center. The treatment given at that time was 1.5 mg of Klonopin and .5 mg of Xanax at bedtime then another .5 mg of Xanax when I would wake up between 3:30 - 4:00 AM (in the middle of the night). This was effective and I always went to sleep within approximately 10 minutes; additionally I went back to sleep within minutes after taking the middle of the night dose. Most of the time I woke wide awake in the middle of the night but not always.

As the years went by I notice I was less likely to wake up in the middle of the night, so I use an alarm clock with a soft music station to wake up. This worked fine until January of this year when I noticed that I was getting very tired in the mornings. My husband told me that I was exhibiting the same symptoms as I did at the onset of this illness, so we video-taped my sleep and I am active throughout the night. It appears that one or both of the medications are not effective any longer.

From what my husband and I have read on this web site it appears that I may have become tolerant to my medications. How can I get information for my doctor about cycling drugs? Do you think this is the problem and what class of drugs should I try?

You should also know that I already take significant amounts of pain management drugs due to an autoimmune disorder that is a small fiber polyneuropathy. I had colon cancer in 1996 and 10 weeks after the chemo ended ( in 1997) I developed pain that spread throughout my body and grew in intensity over the next two years while doctors in Washington D.C area tried to diagnose this strange disorder. I was diagnosed by Mayo (in MN) with a disorder that they had never seen but believed it to be caused by the chemotherapy. The more I move the more the pain (pins/needles and stabbing feeling), so I control this autoimmune disorder by life style changes as well MS Contin and Neurontin.

Please give me a medical reference that would explain the need for cycling drugs if it seems this would be the answer.

Rebecca L.

Medical Reply

The Klonopin and Xanax are both benzodiazepines that work similarly except that Klonopin has a much long half-life (40 hours) than Xanax (6-12). It is unusual to combine benzodiazepines together as they work on the same receptors. These drugs do not decrease the PLMs, but rather decrease the arousals from the PLMs. Therefore, video taping your sleep and seeing increased activity does not prove that these drugs are no longer effective. The only way to be certain about that would be to have a sleep study that monitors the leg jerks and the sleep stages. You may in fact not be getting tolerant to your benzodiazepines but rather they may be accumulating during the daytime (especially the Klonopin) which can result in excessive daytime sleepiness and fatigue.

There is no rational to alternate benzodiazepines as they all work on the same receptors. If one does get truly tolerant then discontinuing the drug for a while will re-establish its effectiveness. Taking the benzodiazepine (shorter acting ones) on an every other day or less basis will usually prevent tolerance.

Neurontin can help PLMS if taken at bedtime but it too can cause daytime sleepiness (even when taken at bedtime).

The drug of choice for PLMD is Requip or Mirapex. They reduce the number of PLMs and PLM arousals.


Sent: Sunday, August 07, 2005 10:42 AM
Subject: Can you help me with my pregnancy and RLS?

I have been diagnosis with RLS and have been taking Klonopin for the past 2-1/2 years. It has worked well however I am 3O years old now and I want to have a baby. My husband and I are currently trying. I am trying to wean off my medication but I am having a really hard time. I feel like I want to put a gun to my head. I am so uncomfortable without it. I find myself crying because of the pain I am in.

What medication can I take that would be safe while pregnant. I read Permax is the only one but nothing is a definite. I also read that Permax causes Valvular Heart Disease. That concerns me. How long is to long to be on Permax before possibly receiving long term side effects. Also would the side effects be passed on to my baby?

Desperately seeking an answer,
Wendy

Medical Reply

There are some newer options. Dostinex (cabergoline) is a dopamine agonist that works very well for RLS. It is safe for pregnant women (Category B) but it does tend to be quite expensive. It is an ergot alkaloid derived dopamine agonist (similar to Permax) which means that it might cause heart valve damage (although no reported cases yet) but for short term use (as with your pregnancy) this should not be a great concern.

Methadone in low dose (which are used for RLS) is also a Category B drug. There is a wealth of experience using this drug in pregnant heroin addicts (who are on methadone treatment for their addiction) and it has proven to be a safe drug (they use an average of about 80-100 mg compared with 5-30 mg for most RLS patients). Narcotics must be stopped late in the pregnancy as they have been associated with neonatal withdrawal syndrome and respiratory depression.

Ambien (Category B) can be used to help you sleep, when necessary.


Sent: Sunday, August 07, 2005 4:24 PM
Subject: RLS, geographical spread and causes?

Hello, I'm wondering if you know of any information or studies that point out the geographical spread of RLS. I'm curious as to whether or not it's more prevalent in North America, or is it just as prevalent in
European countries, Asian countries, etc. I realize that there are many imbalances or "illnesses" that may contribute to RLS as well. Do you by chance have a definitive list or perhaps a more extensive one than it on your site?

Sincerely,
Sandra

Medical Reply

RLS is most commonly found in northern Europeans (possibly as high as 15-20%). In the USA, the incidence in the Caucasian population is about 10%. Asians have a lower incidence, with early studies finding under 1-3% but more recent studies finding as high as about 8%. A study in Turkey found about 3% RLS. Blacks have a very low incidence (1-3%?) but few studies have been done to verify this fact.

Check out RLS Treatment Page, Disease States which has all the disease states currently known to be associated with an increased incidence of RLS.


Sent: Tuesday, August 09, 2005 3:15 PM
Subject: Toddler w/RLS symptoms

My daughter is 2 years and 2months old she recently has exhibited signs of restless leg syndrome and I am so frantic to get her some relief. She has only been showing signs over the last 6 wks or so - all signs of leg jerking go away during the day and are only evident before falling asleep, or when she has been sitting for awhile.

She jerks her left leg and makes a sort of grunting sound (like she is straining). Sometimes she will just lay down for a couple of minutes in front of the TV and does this jerking.  She is very verbal and tells us to go away when she is doing this and she says her leg feels "funny". We went to the pediatrician and we had x rays and blood tests - everything came out clear - she referred us to a pediatric neurologist and we are supposed to see him in 2 weeks. The pediatrician did mention Tums and we are going to try and give her some tonight.

Since I do not have this and neither does my husband,  I would like to know what her long term prognosis is. She does not have the PLMD,  I have watched her during the night and she has no movements during the evening.

She is so happy and active - I do not want this to effect her possibilities - this does not seem to effect her sleep - she just has this urge to jerk her legs - it seems to bother me more than anyone - I just want it to go away, but I will not put her on any harsh drugs since it does not seem to interfere with her daily life -I am concerned long term.

She is so exceptional in everyway - she has strong vocabulary, social skills, athletic, energetic, and humorous - it is just this strange urge to move her legs that keeps coming in the evenings, and times of non activity that are concerning us so much. Also she is off the charts for her age in height/weight - could this contribute to these spasms? She is 40in and 30lbs.

Any suggestions of home remedies, or what we might point out for testing to the doctor would be great. We want our "Angel" to find some relief. Or if this is not RLS what else should we test for????

Please any advice would be great!!!!

Thank you,
Concerned Mom

Medical Reply

It is very difficult to diagnose RLS in young children.  The younger the child the more difficult and your child is near the lower age limit for doctors to be able to diagnose RLS.  However, children that young have been diagnosed.
 
From your story, it is certainly not clear that your daughter has RLS.  To help decide this issue, read the following criteria for diagnosing RLS in children age 2-12.  You should also check out the RLS Foundation website that has a brochure that you can download called Children and RLS.
 
Seeing a neurologist is a very good first step.  Unfortunately, most neurologists do not know much about RLS (and especially childhood RLS) but they should be able to rule out other problems.  If you cannot get a final answer from the neurologist then consider seeing an RLS specialist who specializes in children (there are a few in the USA).
 
If she does have RLS, there are many good treatments available and she should do very well.

RLS DIAGNOSTIC CRITERIA IN CHILDREN AGES 2-12

DEFINITE RLS

The child meets all four of the following adult criteria:

1. There is an urge to move the legs.

2. The urge to move begins or worsens with sitting or lying down.

3. The urge to move is partially or totally relieved by movement.

4. The urge to move is worse in the evening or night than during the day, or occurs exclusively in the evening or nighttime hours.

AND

The child describes leg discomfort using his or her own words. Examples of age appropriate descriptors: oowies, tickle, tingle, static, bugs, spiders, ants, boo-boos, want to run, a lot of energy in my legs.

OR

The child meets criteria 1-4 above

AND

Two of the three following supportive criteria:

1. There is a clinical sleep disturbance for age.

2. A biological parent or sibling has definite

RLS.

3. A sleep study has documented a periodic limb movement index of 5 or more per hour of sleep.

PROBABLE RLS

The child meets these adult criteria:

1. There is an urge to move the legs.

2. The urge to move begins or worsens with sitting or lying down.

3. The urge to move is partially or totally relieved by movement.

AND

The child has a biological parent or sibling with definite RLS.

OR

The child shows signs of lower-extremity discomfort when sitting or lying down, with motor movement of the affected limbs. The discomfort has characteristics of adult criteria 2, 3, and 4: worsening with rest and inactivity, relief with movement, and worsening during evening and nighttime hours.

AND

The child has a biological parent or sibling with definite RLS.

POSSIBLE RLS

The child has periodic limb movement disorder (PLMD).

AND

A biological parent or sibling has definite RLS, but the child does not meet the criteria for definite or probable childhood RLS.


Sent: Wednesday, August 10, 2005 12:31 PM
Subject: RLS or what?

For over 2 years now I have been experiencing a very weird and frustrating thing. I have seen a neurologist who did an MRI (brain and cervical spine) and EEG which were both normal. When lying down to go to sleep or even take a nap during the day I experience jerking or involuntary movements of most parts of my body.

Most of the time I can get past it after a while at night because I am so tired and fall asleep, however if I have had company or an eventful evening I am awake for hours with twitching and quick (sometimes hard) jerking. Is this RLS, they just said myoclonus with no real etiology. I'm worried about MS, ALS, or some horrible progressive disease. I am also a very anxious person. Thanks so much for your advice.

Marsha W.

Medical Reply

You definitely do not have RLS which is a disorder that causes abnormal sensations in your legs and an urge to move them. You may be experiencing PLM (Periodic Limb Movements, or leg jerks) which if vigorous enough may feel like your whole body is jerking. Another possibility is that the jerking is due to hypnic jerks which commonly occur in stage 1 sleep (very light sleep before entering deeper sleep). A sleep study would be necessary to diagnose these problems.

You may have some other movement disorder if the above ones are ruled out. You should see a sleep specialist or neurologist to investigate these jerking movements.


Sent: Wednesday, August 10, 2005 1:20 PM
Subject: Ambien and restless legs?
 
Ambien helps my restless legs which start as soon as I go to bed. I have been taken Ambien 2 years now with 2 days off every 2 weeks per your advice now for the stupid question.  Ambien studies say it is safe but after taking it for several years does it do any damage to your brain chemistry?

Joan R.

Medical Reply

Ambien generally does not help RLS except if it puts you to sleep quickly (in which case you no longer have the RLS symptoms).  There is no known long term side effects from taking Ambien on a regular basis.

Sent: Friday, August 12, 2005 7:22 AM
Subject: Requip and IBS?

I suffer from IBS as well as RLS. I have recently had Requip prescribed for the RLS. I started on the very low dose of 0.25mg/day as there is some evidence that people with IBS are very sensitive to drugs, and I have certainly found this to be the case. I tried to increase the dose to 0.5mg after a few days, taking care to eat at the same time.

However, this made my IBS much worse, my sleep problems did not improve and my pulse was racing whenever I woke in the night.

Barbara H.

Medical Reply

The IBS may make you somewhat more sensitive to Requip but it could be that your body just doesn't mix well with this drug anyway. You could try Mirapex which works similarly, but it might cause the same problems.

An alternative drug that may help your RLS and likely not bother your IBS is Neurontin.


Sent: Friday, August 12, 2005 9:06 AM
Subject: RLS treatment?

Just have been reading all the e-mails on RLS. I am a 48-year old female having suffered with this for 10 years, possibly earlier in life. What scares me is that every type of medication I take seems to trigger RLS. I once had a one-day surgery (biopsy) done.....was reassured that the sedative would calm me. I wasn't too much.

Well, the anesthesiologist and surgeon both were amazed that it couldn't put me out. I kept asking when the surgery would over. This intravenous sedative just would not keep me comfortable. Shortly after the procedure, they wheeled me back to the room and the most horrible feeling of RLS and what I call (whole body restless syndrome) started; tremendous electricity and internal shaking from the top of my head, stomach, and legs, arms. Almost like taking epinephrine? (for asthma attacks). I felt like I wanted someone to shoot me right there.

The only medication that helps me sleep is zopiclone (Imovane) - Canadian - and it is a hypnotic. After 5 or 6 years use, am starting to become intolerant to it and it only gives me 2 to 3 hours sleep. But, my RLS is aggravated by medications and am praying that you can encourage me. Am possibly facing gallbladder surgery and hope Canadian surgeons are aware of RLS.

Thanks for your time,
Jacqueline  

Medical Reply

Your RLS should be managed easily. The first thing to do is ask your doctor to start you on Mirapex or Requip. Start with the lowest dose on increase the dose only if necessary as per the instructions on our RLS Treatment Page. For situations such as surgery, the narcotics (which your doctors will give you postoperatively) will easily cover all of your RLS symptoms.


Date: Fri Aug 12, 2005 10:53:43 AM US/Central
Subject: RLS connection to beta blockers and nicotine 

My inquiry is if there is a known causative connection between atrial-fibrillation drugs, specifically Inderal (an old beta-blocker) and digoxin (plus Lasix and Coumadin) and RLS. My wife's RLS (pretty severe) developed shortly after going on the Inderal/digoxin/Lasix combination last March; she had been on Coumadin quite a while longer. Her cardiologist doubts that there is a connection. It seems to be a strange coincidence.

Also, I have picked up on the idea that nicotine patches can relieve RLS symptoms, but the Foundation's "Medical Bulletin," April, 2004, p. 14, says: "...medications that have been reported to increase the symptoms of RLS or PLMS are nicotine, caffeine, alcohol, ..." This seems to be contradictory with the suggestion I picked up from a British publication (the North Nottingham Prescribing Strategy Group) online that nicotine patches do help.

Marie takes Requip (.25 mg per tablet with a two tablet dose) now, at 6 p.m. It helps avoid RLS until about 4 a.m., but it absolutely zonks her out for the rest of the evening. Dividing doses (according to a suggestion in the Nightwalkers bulletin) between 6 p.m. and bedtime (typically 10 to 11 p.m.) fails to forestall the onset of RLS during the evening. She stays awake, but suffers "jumpy legs" as she calls it. These "jumps" are very sharp.

Her ferritin level is ok, according to her cardiologist. A pulmonary/sleep disturbance D.O. put her on the Requip, dose .25 mg. She takes two, usually at supper time (7 p.m. or later) but has tried dividing them by about three hours; but that hasn't helped.

The letter from the RLS chairman in the Nightwalkers bulletin explains his personal luck with Neurontin, but he combines it with Methadone. We have an appointment with the D.O. August 22 when we intend to explore this combination and see if he thinks it will work better than the Requip. We will also ask about the nicotine patch idea, but I doubt if he has heard of it. We have also seen ads included in the RLS Foundation web site for something called Calm, but the D.O. has scoffed at that after reading the ad.

As you are aware, for newcomers with the problem, it all gets very confusing and frustrating. We are both very active, in charge of the Price Seniors Center in San Marcos, about 60 hours per week each, involving a $600,000 renovation which we are about $400,000 into over the last five years with much activity each day. Any solutions we can come up with for our personal problem may be helpful to others with whom we have contact.

Any ideas that might help will be appreciated,

Ron (and Marie) J.,
San Marcos, Texas

Medical Reply

There is no known relationship between any of the medications that your wife is taking and RLS. Nicotine has been shown to worsen RLS. I have never seen any valid data that supports using nicotine patches (or any other form of nicotine) for RLS.

If Requip is not helping, you may consider a trial of Mirapex. It may or may not work better than Requip. Only trial and error using it will tell.

Methadone and Neurontin are both very good RLS drugs. We usually reserve methadone for more severe cases and rather use less potent narcotics (such as Darvon) or tramadol (the non-narcotic, Ultram) for the milder cases.

Neurontin works well for many RLS patients but does tend to cause drowsiness at therapeutic doses.

The only known benefit of taking the product Calm is profit to the sellers.

A Reply from Ron and Marie


Sent: Monday, August 15, 2005 12:16 PM
Subject: Acupuncture and nicotine for RLS?

As to nicotine: I find on one website: "Nicotine patches are used to alleviate some of the symptoms of PD (Parkinson's Disease). Why? Because nicotine acts on acetylcholine receptors." I understand that PD is a different problem from PLMD, but since most RLS drugs are actually PD drugs, does this seem to have any validity?

How about acupuncture? I find that one of your e-mails from July 25, 2001, noted relief by combining it with folic acid and chelated vitamin E. Anything more recent on acupuncture?

Lastly, after about three months on Requip (two .25 mg at 7 p.m.), my wife can't get through the night without the jerks getting her up about 2 or 3 a.m. for the rest of the night. Also, she is experiencing PLMD much earlier in the day -- like 11 a.m., then intermittently until Requip time at 7 p.m. Can this be rebound and augmentation after just three months? And: is there an antidote to the intense sleepiness she experiences, starting about an hour after taking the 7 p.m. dose? It wipes out evenings which we need for productive work. If she waits until bedtime (10:30 to 11 p.m.) to take the Requip, it's too late to do any good.

Thanks again. Your website is a big help,
Ron (and Marie) J.,
San Marcos, Texas

Medical Reply 

The role of nicotine working helping Parkinson's disease by working on the acetylcholine receptors has nothing to do with RLS. There is not medical literature to support any beneficial effect of acupuncture on RLS. Furthermore, except for the odd patient who claims to have benefited, most RLS patients find no improvement at all with acupuncture.

If the sleepiness side effect of Requip has not improved by now, it is likely that it never will get better. One options it to change to Mirapex which may or may not work as well and not have the same side effect. Another option is to change to Neurontin which may also cause sleepiness.


Sent: Friday, August 12, 2005 7:53 PM
Subject: RLS and Mirapex?

I have had RLS for some years, but more so in recent year. I finally got my former doctor to listen to me and he gave me Sinemet which helped for a time. Then a friend told me about Mirapex and I began taking it very successfully. I have had to increase the amount I take over time, I am now taking .25 mg 3 times a day.

My doctor has now told me that I should only take .25mg a day, but I know I will have trouble if I only take that much. What do you think, can I tell my doctor that I got another opinion, and am not taking too much per day?

Thank you for the service you are rendering to RLS sufferers. I have seen the new RLS ads on TV so perhaps people will no longer say when I tell them I have RLS - "RESTLESS LEGS???? What are those???"

Keep up the good work,
Gloria P

Medical Reply

There is no right or wrong dose of Mirapex. Most patients plateau out at about 3 mg per day but your dose is still at the low to moderate side of this drug when used for RLS.

You should take the lowest dose that keeps your RLS symptoms controlled. If .125 mg three times a day does not help then your dose of .25 mg three times a day is very appropriate. If you are getting RLS symptoms in the morning then you should be taking your first dose of Mirapex in the morning. If your symptoms begin later in the day, then you should start taking the Mirapex later in the day and only use one or two doses.

In simple terms, you use as much Mirapex as you need to control symptoms but not more.


Sent: Friday, August 12, 2005 4:32 PM
Subject: My RLS solution

I am 46 years old and have suffered from RLS for several years and it was just getting worse. I mean suffered. I was living on 1 to 4 hours of sleep a night and some of those were only achieved by rum (when I was lucky). I cut out caffeine (except for 1 morning coke because of hormone migraines). I also found that sleep was improved a little by eating light and healthy with my last meal very early. But still...I couldn't get rid of the RLS. I have arthritis and a lot of lower back pain. I have always felt that my RLS was neurological somehow.

I got to thinking about why it is that I can feel it coming on in the evening hours. Why when I'm at home but not when I am at work. And then I realized that at work I am sitting up in a chair and leaning forward to work at my desk and my computer. But when I get home I slink down, curve my back, tilt back in my recliner rocker and pull my legs up. Even when I sit at my computer at home I curve my back and slouch down and sometimes I even put my feet up on the computer table. It's quite natural really when you think about how furniture is designed now days. Every thing leans back ever so slight. It is really hard to sit in the living room and not be leaning back a little and my curving my back/slouching and putting my legs up made things even worse. Though the course of the evening I was pinching on that nerve by the way I was sitting.

So I tried and experiment not really expecting it to work - nothing else has. I forced myself to sit where the weight was shifted from my lower back/butt to the upper leg area. I pushed by butt all the way into the back of my chair and put an afghan behind my back to counter the reclining position of the chair. I kept my feet lowered or not elevated above the seat. It is a very awkward way for me to sit but darn it...that night. No RLS!!! NONE!!! It has been 3 weeks now and I have been RLS free since.

I know I have issues that I still should go see a doctor about. Degenerative discs perhaps? I don't know and I'm not sure I want to. For now though I am going to work on strengthening my incredibly weak abdomen muscles (to strengthen my lower back) and keep trying to find a more comfortable solution to sitting around the house. But hey...I will sit any way I have to if that's what it takes to finally be able to sleep tonight. I tried so many things - L Theanine, Magnolia Bark, middle of the night hot baths, etc - to try to help me sleep and finally the solution was right there in front of me all the time.

Please pass this on to others. Our furniture is designed to cause us to sit with our body weight centered in the wrong place. Plus we are used to the idea that when we come home from work we kick back, slouch and get comfy.

For me, that 'reclining back and slouching down' was causing my RLS. I'm thinking of putting my husband's back brace that he uses when he lifts heavy stuff on when I get home for a couple of weeks to see if it helps my cure the tendency to sit wrong.

I hope this helps someone else,
Anne H.

Medical Reply

Thank you for sharing your RLS treatment. RLS symptoms are known to get worse in the evening not related to any sitting or lying position. RLS sufferers who do not work (such as housewives) and use the same chairs during the day and evening still notice these night and day changes in RLS symptoms. Therefore it is not clear as to why you solution works but we will share with others to see if some may benefit.















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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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