Patient letters on RLS symptoms and remedies- Page 68

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

Sent: Saturday, June 17, 2006 2:03 AM
Subject: PLMD /RLS question.

In a sleep study, I found I had 247 leg movement in about 4 hours of sleep. Is this a lot? (none of the doctors I have asked have been able to tell me) What would a normal amount of leg movement be?

I think my doctor is going to put me on OxyContin or methadone to help with my sleep and chronic pain that are most likely from SLE (Systemic Lupus Erythematosis). So I think that will help a lot from what I have read on your site.

Jamie D.

Medical Reply

A normal amount of PLM (Periodic Limb Movements) is 5/hour. People over 50 often have over 10/hour so the amount that you have (over 60/hour) is very abnormal. However, if they do not cause sleep arousals (changes from deep to light sleep) then they may be of no clinical significance.

Although narcotics do help PLM somewhat, dopamine agonists (Requip or Mirapex) or anticonvulsants (gabapentin) work much better.

Sent: Saturday, June 17, 2006 7:19 AM
Subject: Mirapex question

I've had severe RLS symptoms since last October. Sleep was not a possibility a night, regardless of the dosage of sleep meds I was prescribed. The worms crawling beneath the skin of my legs, and upper arms, the pins and needles on the legs, and the twitching was unbearable.

I couldn't get a referral to neurology until February (I use the VA hospital--usually quite a wait for specialty clinics). In the meantime, my therapist started trying me on the various benzodiazepines, although she did not believe I had RLS, and was adamant in her position that I should begin an anti-psychotic like Risperdal or Zyprexa. I didn't believe I was psychotic...I simply had no other symptoms of psychosis, and I have a neuropathy for which I get disability compensation, and I read that these conditions definitely have some correlation.

To make a long story short, she finally tried me on Klonopin--which at least allowed me to get to sleep. But my tolerance level kept increasing, so she'd increase my dose--been taking 3 mg a night since December.

Saw my neurologist in February, and they initially wanted to try me on Neurontin, b/c I had a drug-induced psychotic episode 3 years ago and they said dopamine agonists can trigger psychosis. Neurontin did not help night-time RLS, but really helped neuropathy daytime pain. My follow-up with my neurologist was not until 2 weeks ago.

Life on Klonopin had been dreadful--severe headaches and withdrawal symptoms that start mid-day and don't go away until I take it at night. Plus, it's not even entirely effective for my RLS. Accordingly, I asked my neurologist if I could try Mirapex. Regardless of whether psychosis might be triggered, I had to give it a try.

Mirapex instantly showed effectiveness at .125 mg, but I was still taking all the Klonopin, as well. I'm now in the process of coming off Klonopin relatively quickly, which had to happen sooner than later anyhow (very insidious drug), while going on Mirapex. Coming off the Klonopin is only exacerbating my RLS, and so far, even with heightened levels of RLS, Mirapex seems to be effective at .25 mg.

Problem: coming off Klonopin is a good thing, but just making me so damn paranoid and anxious, which was never a problem before--realize only supposed to be temporary, though. My head feels very spacey and disjointed and constantly feel scared that I'm hearing auditory hallucinations. In the meantime, in going from .125 to .25 mg, I'm feeling more speedy during the day, and more anxious. Don't know if the Mirapex is directly causing the anxiety, or any initial change/ stimulation it's causing in body is realizing itself as anxiety due to the other extenuating circumstances: heightened anxiety levels due to Klonopin withdrawal. And related, I just can't get it out of my head that I'm about to hear auditory hallucinations or that maybe I just did hear some. The doctors just got that in my head as a fear, and the Klonopin withdrawal is making me pretty nuts, and experiencing the hallucinations that accompanied my drug-induced psychosis several years ago is by far my biggest fear.

Right now I'm thinking that I just need to push it out, push through the next few weeks. My body will adjust to the Mirapex (which definitely is working for the RLS), and re-stabilize itself from Klonopin withdrawal, which is most assuredly making me much more anxious and fearful than normal. Just quite nervous about everything going on, and not entirely sure what's due to coming off Klonopin (which I wish I'd never started), and what's due to going on Mirapex--definitely don't want to experience psychosis again, but Klonopin also was not a long-term solution for me, nor was Neurontin, and nor are any pain-killers due to substance-abuse history.

Do you agree that pushing through, maintaining the course, at least temporarily, is probably advantageous? That most of these problems will probably subside. I am wary of telling psychiatrist about any problems b/c she didn't want me to try a dopamine agonist, and will immediately pull me off it and just increase my Klonopin dosage, or couple that with temazepam (Restoril). This is not an acceptable option for me right now--at least not without sufficiently giving this a chance.

Any other thoughts? This is just a not-so-good period, and to be quite honest, I'm just looking for an optimistic voice of encouragement from a knowledgeable, reputable source. Appreciate it greatly if you could be that voice.

Mike

Medical Reply

Your case is somewhat complex. It is very likely that coming off Klonopin is causing much of your current problems. Once off Klonopin and stable, you may find that Mirapex does not really bother you. However, you cannot be sure until you are off of the Klonopin for a while.

Theoretically, Mirapex might be able to worsen psychosis, but practically, at the low doses given for RLS, we rarely see this problem.

Sent: Monday, June 19, 2006 8:13 PM
Subject: RLS?

I have been diagnosed with restless leg syndrome, and have been prescribed Requip. I was to start by taking .25 mg. 1 to 3 hours before bedtime. I was then to titrate to 1mg. per night. I have taken Requip for 5 days, and am now taking .50 mg. The problem is that I am feeling wired and tired simultaneously, and throughout the day I feel spacey and drugged.

 When I go to bed I fall asleep with little effort. I then wake up about an hour later feeling very wide awake and a bit wired. I continue to fall asleep for short periods of time, sometime 20 to 60 minute sleep periods. In between periods of sleep I am WIDE awake. Actually, my sleep pattern was fine before taking the Requip. The restless leg would cause me to have difficulty falling asleep at times, but once asleep I usually did not awaken until morning.

The pulmonologist prescribed Requip following a sleep study in which he stated I awakened 17 to 25 times per hour. Are the sleep problems I am having indicative of what others have experienced, and are the side effects normal? I have also been diagnosed with mild sleep apnea.

Toni H.

Medical Reply

It sounds as if you have PLMS (Periodic Limb Movements in Sleep) not RLS. Even though this causes arousals from deeper sleep to lighter sleep 17-25 per hour, that does not mean that you need treatment.

Since you have already experienced side effects (and we do not really know if .25 mg may be the correct dose to improve the PLMS and not cause side effects) it might be prudent to consider another drug (or no drug therapy at all, which may actually be best).

If another drug is necessary, any of the sleeping pills (Ambien, Lunesta, etc.) may be amongst the best choice.

Sent: Monday, June 19, 2006 9:26 PM
Subject: Requip and death?

Have there been any reported deaths caused by Requip? A friend recently passed away and her husband believes her death was caused by a "reaction" to Requip. She had been on Requip for RLS for about 60 days. She started complaining about breathing difficulties and chest pain. This woman had MANY problem with RLS just being one of them.

She had been taking Sinemet for about 20 years and it stopped working for her. She also had diabetes and some "mild" form of leukemia. Her doctor was monitoring her closely but I don't think she was always truthful with him. She said that the Requip was helping her so the doctor increased her dose.

I have read all the side effects I have been able to find but none mention death other than fetal death.

Medical Reply

No deaths due to Requip have been reported to the best of my knowledge.

Sent: Tuesday, June 20, 2006 6:05 AM
Subject: RLS and Trilogy of Fallot

I was born as a "Blue Baby" with a Tetralogy of Fallot. I survived and was operated on the first time at age three in Munich and second at age 11 at the Mayo Clinic in Rochester/Minnesota. That was life saving for me. I'm not healthy but I live and I'm very grateful for that. However when the heart wasn't the main problem at the moment anymore the doctors diagnosed a scoliosis, a very severe bend of my spine. I got operated on that, too, here in Germany with success and lived happily with only a few problems because of my heart failures. I even could work for 10 years and I made friends and got hobbies.

Now I got a new problem and I'm really desperate because over here in Germany there are too less doctors who have any experience either with my heart disease or with the combination of the Tetralogy of Fallot and the RLS.

I am very sure that I have the RLS because all the symptoms are there and I can't sleep at night and that's making me crazy. I remember having restless legs even during my childhood but my parents always thought it has something to do with my heart. They massaged my legs at night with peppermint oil but I remember having those problems all my life - more or less.

Now my doctor says he would describe me the drug "Restex" but because it isn't tested enough he is unsure how my damaged heart would react to it. He has no experience, no other patient with this constellation.

Therefore I want to ask you if you know any patient who has both RLS and the Tetralogy of Fallot and takes a drug that helps with the RLS.
Have you any experience with this combination?

Kerstin L.,
37 year old female, Germany

Medical Reply

Restex is the first drug approved for RLS in Europe. The RLS specialists in the USA do not like using drugs like Restex that contain L-dopa as they can worsen the RLS problem with time. Mirapex and Requip are now the drugs of choice and both of these drugs should be fine to use in heart patients such as you. You can check out our RLS Treatment Page for more information on how to use these RLS drugs.

Sent: Tuesday, June 20, 2006 7:56 AM
Subject: RLS and hydrocodone usage?

In 2001, my T-10 disc “exploded” causing me to be paralyzed for a month. I have rehabilitated since then but I have some conditions that will not improve (i.e. bladder, bowels). I moved to Arizona in 2004 and during the search for a new job my RLS got worse. Since I was not employed or had insurance, I started taking my husband’s Hydrocodone. I know you are not to take other peoples medicines, but desperate times call for desperate needs.

Now I am employed and have insurance, and I am actively taking Requip and Neurontin for my RLS. This helps to a certain point, no RLS but the side effects of the Requip (hot flashes) is unbearable. Once I finally get to sleep I sleep so sound that I have “accidents” due to my incontinence. When I was taking my husband’s medicines, I never had an accident, I always felt the urge to get up and go to the bathroom.

What do you suggest? Take the Requip/Neurontin and sleep in my own urine or talk to the doctor about taking hydrocodone and prevent the bed wetting? Thank you.

Leitha

Medical Reply

You may want to first try Mirapex instead of Requip. People do respond quite differently to these otherwise somewhat similar and effective dopamine agonist drugs.

If the Mirapex trial proves to be no better than when on Requip, then it would be very reasonable to use a low dose of a narcotic on a daily basis. Vicodin (hydrocodone), Ultram or other painkillers should then be considered for daily use.

Sent: Tuesday, June 20, 2006 12:51 PM
Subject: RLS worse while on Requip?

I am 27 years old and have had RLS and PLMS since I was a child, although, of course, no one knew what it was. About three years ago, I had a sleep study, but the doctor said my difficulty in sleeping was just depression and there was nothing she could do. So I did my own research, brought it to her and told her I had RLS. She prescribed Requip. It helped quite a bit. I still had symptoms, but they were much better.

For the past month, I have noticed an increase in symptoms. I told my doctor and she doubled my Requip dose, admitting she knows nothing about the disorder. I doubled the dose, but things continued to get worse. I am now waking up in the morning with symptoms, they last all day and, of course get worse at night. They are worse than they have ever been. I feel like I might lose my mind. I have an appointment to see a specialist on July 10th, but feel like I might go crazy until then.

 I will do anything to keep the demons at bay, but want to make sure that I am doing my part as a patient. I have already read “Sleep Thief” and am looking into other books recommended on the website. My question is, what do I do? What do I tell my doctor when I go? What should I bring with me? How do I keep from losing my mind? How do I explain this disorder with a silly name to others? I feel desperate!

Brandy H. A.

Medical Reply

Although RLS sounds like a silly disorder (and there have been several moves to have the name changed) it is clearly a very serious disorder that deprives patients of sleep. Due to Requip being FDA approved (and the subsequent advertising) doctors are starting to notice RLS and becoming much more serious about diagnosing and treating (in part due to the increasing patients demand).

You are clearly experiencing augmentation from Requip. This happens in a small percentage of Requip users and is actually a worsening of RLS that occurs within several weeks to months after starting the drug. The treatment is to get off of the drug.

However, stopping the drug will also cause short term (days to weeks) worsening of your RLS symptoms, so this must be treated. Most doctors are not familiar with augmentation or how to treat it (unfortunately). Most RLS specialists use narcotics (Vicodin, oxycodone, methadone) to cover the withdrawal period.

After a month or so, there are several choices. A different dopamine agonist can be tried (Mirapex) and you may or may not experience the same augmentation problem. Neurontin can be used instead. You may also consider staying on low dose painkillers (the narcotics or Ultram) instead.

Treating this augmentation problem often requires working closely with an RLS specialist who is adept at this difficult situation. However, if you can receive this help, you should do very well.

Sent: Wednesday, June 21, 2006 1:08 PM
Subject: RLS and End Stage Renal Disease (ERSD)

I have had restless legs since I was in high school although they were pretty well managed. I received a kidney transplant from my mother in 1973 and approximately 4 years ago that kidney started to fail and was placed on dialysis 2 years ago. Needless to say my RLS was unrelenting, sitting at dialysis for 4 hours was torture. I was finally able to have some relief with Neurontin 600 mg, Restoril 15 mg and hydrocodone 5/500 2 tabs all taken at bedtime.

Happily I received another transplant in April from my husband and my restless legs are much improved however I am still taking the medication at bedtime. I am worried if I stop any of it the RLS will return. Do you have any information or experience with this kind of a situation?

I did find, while in the hospital because of taking the hydrocodone for so long my tolerance for pain medication is very high, even though I am a small person so pain control was an issue, and I am still trying to titrate down off of the pain meds I was given in the hospital as I had several post-operative complications, including pancreatitis.

Anyway, any suggestions for titrating off the RLS meds or should I just continue and be grateful my symptoms have virtually disappeared?

Cheryl C.

Medical Reply

Normally RLS symptoms disappear in dialysis patients after they get their kidney transplant. In your case (where you may already have had pre-existing RLS) things may be different. They only way to tell if you still have RLS would be to slowly decrease your RLS medications. If the RLS is still present, you will clearly be able to tell.

If you still have RLS problems when reducing your medications, you may want to consider changing to Requip (which is metabolized in the liver, not the kidneys so that should eliminate one worry). This may be a better treatment for your RLS and allow you to get off of the narcotics.

A Reply from Cheryl C.

Sent: Monday, June 26, 2006 11:12 AM
Subject: Re: RLS and End Stage Renal Disease

As I mentioned my physician is trying to titrate me off of pain medication, as of Saturday I was taking 2.5 mg of oxycodone (down from 5 mg) in the a.m. and the same at bedtime. I do have a lot of anxiety/panic feelings while titrating down so he prescribed Ativan 1 mg not to be taken more than twice a day. Saturday night and worse last night my restless legs are again acting up.

Do you think it is the titration of the oxycodone or the Ativan? Would another anxiety medication be better for RLS, i.e. Xanax? My sister takes Xanax so I am trying that today to see if it makes a difference. Do you think that I will always have to take narcotics at bedtime, or would the Requip alleviate the need for the narcotics? My nephrologist is very understanding because he deals with RLS a lot but I feel it is such a trial and error treatment that maybe you may have more insight.

Cheryl C.

Medical Reply

It is most likely that your worsening RLS symptoms are occurring from the decrease in oxycodone (which is very good at reducing/eliminating RLS symptoms). Requip would be very appropriate to treat your RLS problems and resolve your need for oxycodone.

There is very little difference (except for duration of action) between Ativan and Xanax, although some patients prefer one over the other.

A Reply from Cheryl C.

Sent: Tuesday, June 27, 2006 9:42 AM
Subject: Re: RLS and End Stage Renal Disease

Do you have any suggestions as far as transitioning from the Neurontin and oxycodone to the Requip?

Medical Reply

That should be relatively simple. Just stop the Neurontin and start the titration of Requip (with or without the starter kit). You can then use oxycodone to treat any breakthrough RLS symptoms (which should be less and less and you increase Requip to the correct dose) until all the RLS is treated and you do not need any more oxycodone.

Sent: Saturday, June 17, 2006 7:19 AM
Subject: Mirapex question

I've had severe RLS symptoms since last October. Sleep was not a possibility a night, regardless of the dosage of sleep meds I was prescribed. The worms crawling beneath the skin of my legs, and upper arms, the pins and needles on the legs, and the twitching was unbearable.

I couldn't get a referral to neurology until February (I use the VA hospital--usually quite a wait for specialty clinics). In the meantime, my therapist started trying me on the various benzodiazepines, although she did not believe I had RLS, and was adamant in her position that I should begin an anti-psychotic like Risperdal or Zyprexa. I didn't believe I was psychotic...I simply had no other symptoms of psychosis, and I have a neuropathy for which I get disability compensation, and I read that these conditions definitely have some correlation.

To make a long story short, she finally tried me on Klonopin--which at least allowed me to get to sleep. But my tolerance level kept increasing, so she'd increase my dose--been taking 3 mg a night since December.

Saw my neurologist in February, and they initially wanted to try me on Neurontin, b/c I had a drug-induced psychotic episode 3 yrs. ago and they said dopamine agonists can trigger psychosis. Neurontin did not help night-time RLS, but really helped neuropathy daytime pain. My follow-up with my neurologist was not until 2 weeks ago.

Life on Klonopin had been dreadful--severe headaches and withdrawal symptoms that start mid-day and don't go away until I take it at night. Plus, it's not even entirely effective for my RLS. Accordingly, I asked my neurologist if I could try Mirapex. Regardless of whether psychosis might be triggered, I had to give it a try.

Mirapex instantly showed effectiveness at .125 mg, but I was still taking all the Klonopin, as well. I'm now in the process of coming off Klonopin relatively quickly, which had to happen sooner than later anyhow (very insidious drug), while going on Mirapex. Coming off the Klonopin is only exacerbating my RLS, and so far, even with heightened levels of RLS, Mirapex seems to be effective at .25 mg.

Problem: coming off Klonopin is a good thing, but just making me so damn paranoid and anxious, which was never a problem before--realize only supposed to be temporary, though. My head feels very spacey and disjointed and constantly feel scared that I'm hearing auditory hallucinations. In the meantime, in going from .125 to .25 mg, I'm feeling more speedy during the day, and more anxious. Don't know if the Mirapex is directly causing the anxiety, or any initial change/ stimulation it's causing in body is realizing itself as anxiety due to the other extenuating circumstances: heightened anxiety levels due to Klonopin withdrawal. And related, I just can't get it out of my head that I'm about to hear auditory hallucinations or that maybe I just did hear some. The doctors just got that in my head as a fear, and the Klonopin withdrawal is making me pretty nuts, and experiencing the hallucinations that accompanied my drug-induced psychosis several years ago is by far my biggest fear.

Right now I'm thinking that I just need to push it out, push through the next few weeks. My body will adjust to the Mirapex (which definitely is working for the RLS), and re-stabilize itself from Klonopin withdrawal, which is most assuredly making me much more anxious and fearful than normal. Just quite nervous about everything going on, and not entirely sure what's due to coming off Klonopin (which I wish I'd never started), and what's due to going on Mirapex--definitely don't want to experience psychosis again, but Klonopin also was not a long-term solution for me, nor was Neurontin, and nor are any pain-killers due to substance-abuse history.

Do you agree that pushing through, maintaining the course, at least temporarily, is probably advantageous? That most of these problems will probably subside. I am wary of telling psychiatrist about any problems b/c she didn't want me to try a dopamine agonist, and will immediately pull me off it and just increase my Klonopin dosage, or couple that with temazepam (Restoril). This is not an acceptable option for me right now--at least not without sufficiently giving this a chance.

Any other thoughts? This is just a not-so-good period, and to be quite honest, I'm just looking for an optimistic voice of encouragement from a knowledgeable, reputable source. Appreciate it greatly if you could be that voice.

Mike

Medical Reply

Your case is somewhat complex. It is very likely that coming off Klonopin is causing much of your current problems. Once off Klonopin and stable, you may find that Mirapex does not really bother you. However, you cannot be sure until you are off of the Klonopin for a while.

Theoretically, Mirapex might be able to worsen psychosis, but practically, at the low doses given for RLS, we rarely see this problem.

Sent: Friday, June 23, 2006 7:23 AM
Subject: Ropinirole Starter Dose Titration Kit?

I read with great interest that Ropinirole has now been approved for use with RLS. My wife has severe RLS for which she takes Sinemet (10-100 & 25-100) and Tramadol (50mg & 150mg) (the latter also for chronic pain) but the Sinemet makes her nauseous and she often vomits them up. However, they have controlled her RLS symptoms fairly well.

Her dosing:

1 x Sinemet 10-100 12:00
1 x Sinemet 10-100 17:15
1 x Sinemet 10-100 19:45
1 x Sinemet 10-100 22:15
1 x Sinemet 25-100 22:15
1 x Sinemet 25-100 03:00

Enter Ropinirole! Is this Titration Kit available? How would she begin to add this to her regimen? I am sure that she would want to continue with the Sinemet until the Ropinirole was well established; then I presume she would ease off on the Sinemet?

Louis M. A.

Medical Reply

Changing over from Sinemet to Requip can be tricky. Your wife has already exceeded the "safe" range of Sinemet (which is one 25/100 tablet per day) and is at high risk of developing augmentation (worsening of her RLS, if she has not already developed this problem which is why she now has severe RLS).

The Requip starter kit is made for once a day evening/bedtime RLS so cannot be used for your wife's RLS. Normally we would add in the Requip (at .25 mg at 12:00, then again at about 18:00 -20:00) while eliminating the Sinemet slowly. The Requip dose should be increased every 5-7 days by .25 mg until symptoms are relieved. Ultram (or a narcotic like Vicodin, methadone, etc.) can be used to treat any of the RLS symptoms that are not covered by the Requip as it is being titrated to the correct dose (which can take a few weeks).

Alternatively, the Sinemet can be stopped cold turkey but high doses of a potent narcotic (such as methadone) would be necessary to cover the RLS symptoms while slowly titrating the Requip according to the above schedule.

Sent: Friday, June 23, 2006 1:47 PM
Subject: RE: Mirapex side effects?

Me again…. I am at my wits’ end. I went to a neurologist sleep specialist who promptly started me on Requip (ramping from 0.25mg to 1.5 mg over 6wks) and 12.5mg Ambien CR. Then he wanted a sleep study while taking these drugs. The sleep study came back fairly normal. But how is that meaningful, if I was already on Requip and Ambien?? For my first sleep study in 2002 I was not allowed to take any medications. I had an arousal index of 7.xx. This time my arousal index was 1.xx. The docs conclusion was that the Requip (at 0.25mg for the study) is controlling the PLMs.

When I skip the Ambien, I wake up a lot at night. When I take the Ambien, I am hung over the next day. I’ve tried the 6.25mg and 12.5mg Ambien CR (sleep better on higher dose). I tried just regular 10mg Ambien last night and seemed to do okay during the night, but am very tired today.

I have no idea what to do.

Do I really need the Requip? Why take 1.5mg (where I’m at now) if 0.25mg apparently reduced my arousal index to 1.xx?

I have a lot of nausea….all day long. Is this the Requip or Ambien, which are taken only at night?

A few doctors have suggested Provigil or Adderal to reduce the daytime fatigue. I can’t comprehend the fact of taking a stimulant to wake up every day and a sleep aid to sleep every night.

Any suggestions??
Kathy J.

Medical Reply

Treating PLMD is not very well defined. However, if you have under 15 PLM arousals per hour (index) then the PLMS is of no real medical interest (and even when much higher is thought by many sleep specialists to be of no medical consequence). Therefore, based on your info, the lower dose of Requip would be reasonable (especially if it takes care of your RLS symptoms also...if they are still present).

We do get sleep studies while on Ambien (or other drugs) to see how the patient is doing with this treatment. If the Ambien causes daytime sleepiness, then try Sonata which has a very short half-life of only one hour. If the daytime sleepiness persists, then Provigil is a very good choice (and yes, there are a lot of patients with bedtime insomnia and daytime sleepiness who take a sleeping pill at bedtime and a stimulant in the morning). However, we usually do a sleep study with an MSLT (nap studies) the next day to define the severity of the daytime sleepiness before prescribing Provigil or other stimulants.

Sent: Saturday, June 24, 2006 8:22 PM
Subject: Increased RLS with Rozerem?

I recently participated in a sleep study and my physician said I needed medication to help me reach the third stage of sleep. He prescribed Rozerem, but every time I take it, I experience restless let syndrome. Previously I rarely ever experienced RLS and when I did, it was mild.

I've read Rozerem actually helps RLS. Is there any reason why it is affecting me this way?

C. Jacobs

Medical Reply

Rozerem acts upon the melatonin receptors in the brain and helps synchronize the body back into a more regular/normal pattern of sleep. There are no studies or reports (as far as I know) linking Rozerem with RLS (in either a good or bad way).

Melatonin has been reported to help PLM (Periodic Limb Movements) and most drugs that help PLM usually help RLS. However, there is clearly not enough information available yet to comment on your particular observation of RLS symptoms with Rozerem.

Furthermore, Rozerem only helps sleep onset. It does not increase deep sleep (stages 3 and 4).

Sent: Sunday, June 25, 2006 12:19 PM
Subject: Exacerbation of RLS by drugs?

Do any of the following drugs exacerbate RLS/PLMD that you know of: Colchicine, Tricor, HCTZ or Zocor? My grandmother has RLS/PLMD and is on all four. Also, does Skelaxin, Relpax, Imitrex, or Orudis offer any relief from the symptoms of augmentation? I am the patient trying to survive augmentation until I can see a specialist on July 10th and the drugs previously mentioned are ones that are available from previous experiences. I am visiting my parents who live in another state (I'm from Kentucky and my parents live in Louisiana) and am unable to see my personal doctor to help with the symptoms and am about to go nuts! Thanks so much!

Brandy A.

Medical Reply

None of your grandmother's medications affect RLS nor do any of yours help (or hinder) it. Painkillers (narcotics like Vicodin or non-narcotics like Ultram) are amongst the best drugs for treating augmentation.

Sent: Monday, June 26, 2006 11:11 PM
Subject: RLS and Cymbalta?

Will Cymbalta make my legs jerk? Every anti-depressant I have tried does except Wellbutrin. A doctor wants me to try it, but I am almost afraid to even try it, as I'm almost sure what will happen.

Irene

Medical Reply

Cymbalta will worsen RLS and PLMD more often than not. Serzone is in the same class as Cymbalta and does not worsen RLS or PLMS but may cause rare side effects of liver failure (which is why it is not used very much any longer).

Trazodone is also RLS friendly but it is only a modest antidepressant.

Sent: Tuesday, June 27, 2006 12:07 AM
Subject: RLS treatment question.

I know you must hear this often but I am truly almost at my wit's end. I have had RLS for many years but was only diagnosed about 9 years ago. Ten years ago I was diagnosed with NHL and had CHOP chemotherapy. Today, I have peripheral neuropathy. I also have sleep apnea My peroneal veins for about 3/4 of their length are useless.

Over the years, I have tried Neurontin, Requip, Mirapex, Sinemet, Lyrica, Gabitril, Tylenol #3, clonazepam, quinine, Ultram. Most recently I was on Mirapex, Lyrica, baclofen, Tylenol #3. I was having breakthrough at noon or earlier. Often couldn't sit and eat dinner much less sit around after dinner. Finally I began to have RLS symptoms 18-20 hours a day. Last week, I got about 5 hours sleep over a period of 4 days. I was ready to crash.

In fact I did crash, I started "passing out", falling asleep" whatever you want to call it without ANY warning. I fell on the floor twice-twice fell and hit my head on the kitchen counter and" caught" myself falling numerous time even while taking a shower. Fortunately I did not have any daytime episodes of this sort only those at night when I was extremely tired.

I stopped taking everything because the falling scared me a great deal.  Now my doctor wants me to try Requip with Ambien using a CPAP with oxygen at night. The first night, I slept ok-the second night-I took the Ambien and Requip 3 hours ago and here I sit and write this letter because I cannot go through any more sleep deprivation and am desperately seeking some answers. While I would be happy without any narcotic drugs based on my years of dealing with this, I think they fit into the equation somewhere. My doctor says they are for pain and if I am not having pain then why use them.

I hate to sound desperate but frankly I am. While going through chemo, I never once felt like giving up no matter how hard and now I am looking seriously at my quality of life.

Gena S

Medical Reply

Your case is clearly quite complex. It is difficult to say whether the doses and combinations of drugs that you have been on were optimal.

Assuming that you did take adequate doses of the medications that you have listed, then choosing a narcotic would be a reasonable choice of RLS treatment. Methadone generally works very well but most doctors who are not familiar with RLS (as yours appears to be) and are not comfortable with potent narcotics (and methadone in particular) will be very reluctant to prescribe this drug.

Sent: Tuesday, June 27, 2006 6:41 AM
Subject: RLS causing sexual arousal?

I am a 46 year old female who has probably had restless legs most of my life that has gotten progressively worse as is it's course. Not until the last two years have I got answers to the creepy crawly feelings that I have been pestering doctors with all my life. I understand that it can occur is the arms and legs and trunk as it does for me. I can not find references to where in the trunk it occurs. I know where it occurs for myself and can not think of any other thing but to be blunt about it.

When my RLS is at it's worse 24/7.  I am in constant state of arousal and that whole area is buzzing. My doctor went to the RLS conference in New York last summer and mentioned the fact that I often have to masturbate to get things calmed down to sleep and they said they had heard of that. That only works when the RLS is mild. Not until recently have I been able to put into words the feeling of arousal vs. my past descriptions of it being creepy crawly down there. When I told my doctors they sat up and took notice and finally understood but as I am sure you know there is no protocol for treatment of this.

I am trying the drug given to sexual offenders but only 1 pill a day vs. the 6 per meal taken by sex offenders. Have you heard of other cases like this, is there any research being done or planned in this area? 

I also have PLMD, sleep apnea that worsens when the RLS eases but I have a CPAP machine to deal with that. Diabetes, thyroid, high blood pressure, high cholesterol all in good control by oral medications. Fibromyalgia, seasonal asthma, non stop flu during the flu season and other pesky issues cannot compete with being driven to distraction with RLS.

I started walking every day a year ago and have lost 30 plus pounds, but I cannot walk 24/7. I had a hysterectomy at a young age due to endometriosis and I am being treated for chronic long term depression. I have switched from Prozac to Wellbutrin, get iron shots regularly, take Mirapex, codeine, clonazepam for the RLS. These have helped but have come no where close to hitting the mark.

I am willing to do or try anything. If you told me sitting in a tub of boiling water would numb it I would jump in. Please....

Tracie L. S.

Medical Reply

I have heard of many cases of RLS that improve with masturbation or sexual activity (although some get even worse). RLS can occur in any part of the body including the trunk (any or all parts), face, neck, limbs, or genitals. Usually Requip or Mirapex helps this problem.

Clonazepam may help you sleep, but usually does not help RLS (and there are better shorter acting sleeping pills). You may want to consider adding an anticonvulsant (Neurontin or Lyrica which are also used for neuropathies) and/or stronger painkillers (such as oxycodone or methadone). Some combination of the above drugs should resolve your problems.

Sent: Thursday, June 29, 2006 11:45 AM
Subject: RLS painful symptoms?

I am only 16 years old. Since I was very young, I remember having that strange feeling in my legs that feels a bit better when I walk or move around. My mom, who's 53, and her sisters have RLS, so my mother and I assumed that I had the same thing. It's usually very rare that I have the feeling, but lately it's seemed that it's somewhat different than what my mom goes through.

Most people that I've talked to have the feeling at night time or when they go to bed (this is especially hard for my mom, and she usually tries to find relief by taking hot showers). However, I usually get the feeling after walking for a while or when I'm a bit nervous. Usually at first, it'll help if I walk around, but then it'll just continue to get worse until I have trouble walking. At that point, the only relief I find is when I rub my legs. Sometimes it gets so bad that it seems to hurt, which I've never heard of in anyone I've talked to before.

I know I have some type of RLS because I have that weird feeling that makes me want to walk around, but I don't know why I experience the rest of what I've described.

Angela H.

Medical Reply

Most RLS sufferers do not describe their symptoms as painful but a significant minority (10-20%) do have painful symptoms. Therefore, you are not alone. As long as you can get to sleep and otherwise do well no other treatment (other than what you are already doing) is necessary.

However, when the RLS symptoms prevent you from getting adequate sleep or otherwise living your life and being happy, then there are several medications that can make you symptoms free.

Sent: Thursday, June 29, 2006 2:20 PM
Subject: RLS better with soap in bed?

I have experienced RLS off and on the past 2 years. I was reading a local newspaper and came across a letter to a doctor from someone that was experiencing RLS. What the doctor had recommended did sound crazy but I had done what the article had suggested and to my surprise I have not been experiencing the feeling in both my legs or arms for some time.

So trying this may or may not help but a very cheap remedy if it does work .Simply open a package of bar soap and put it in between your sheets while you sleep. I put the bar of soap down towards the bottom of the bed, primarily where my feet are and leave it there till I change my sheets. Sounds crazy I know but it has worked for me.

I'm not really sure why. The article that I had come upon did not give reason to why it may work. The only thing that I can figure, is that maybe the lye in the soap has a reaction. Hope this works!

Graham & Denise F.

Medical Reply

The "soap trick" for RLS (and several other disorders) has been around for quite a while. We get a letter about this "cure" every several months. However, there is absolutely no way that the soap can help your RLS except through the placebo (sugar pill) effect. It is very common for ineffective treatments (like soap or a sugar pill) to work when the patient believes that they will work.

However, if the bar of soap works for you, there is no reason not to use it (except for the soapy smell of your sheets).

Sent: Friday, June 30, 2006 5:16 AM
Subject: RLS and twice daily Requip?

I have probably had RLS for a year or more- I am taking Requip as doctor advised- one tablet 1 to 3 hrs before bedtime.

It works for 5 or 6 hrs only-sometimes at night I take another one and I am fine--Now I am having the problem during the day at work-and sometimes while I am braking while driving. I am only supposed to be taking 1 Requip daily-I am using 2 and still have the problem during the day---??? Would 3 Requip be OK?

I don't know what the increased is doing to me, is it causing me harm???

Richard H.

Medical Reply

Although Requip is only FDA approved for use once per day (1-3 hours before bedtime as you were initially instructed to do), many RLS patients need and take the medication 2-3 times per day. If your problems have always been RLS starting in the morning then increasing the dose to 3 times daily would be appropriate.

However, if your symptoms have only started to occur in the daytime since starting Requip (which is what your letter suggests) then you are developing augmentation and there is a reasonable chance that your RLS will get worse if you increase the amount of Requip that you take. In fact, it might be better to stop the drug and use another class of drug (such as gabapentin or a painkiller).

Sent: Friday, June 30, 2006 5:59 PM
Subject: RLS and Requip and taking charge of your own health!

About 10 years ago, I finally told my doctor about this "thing" that was happening to my legs and my left arm. I told him I felt like I wanted to take my muscles out and stretch them as far as I could, and if I didn't move them, they would jerk on their own about every 20 to 30 seconds. He sent me for x-rays and scans and found nothing - so he dismissed it as nothing. Every year when I went in for a physical, I told him the same thing, even after I found out that there was a name for what I had, he said, "exercise more, lose weight, etc . . .". Believe me, that didn't help.

This last year I was up to 5 to 6 nights a week where I would only get about 3 hours of sleep (after walking the floor and stretching my legs and arms until I was really sore). I finally had a show-down with my doctor, demanding a prescription for Requip; if he wouldn't give it to me, that I would find another doctor that would. He gave me the prescription - to increase the dosage until my symptoms stopped and let him know what happened.

For the last three months (I'm currently taking 1 mg a day) I have had only 1 (minor) episode of RLS. I'd forgotten that most people actually sleep THROUGH the night. When I contacted my doctor to tell him, he apologized and that he had started doing his research into the whole RLS problem. This has taught me that I need to be in charge of my own health care and not just rely on my doctor's say so. I realize Requip doesn't work for everyone (thank God, it currently works for me), but because of all the people who respond to your website (and the many others) this is only the beginning of a good night sleep for everyone with this life altering condition.

Medical Reply

You are very right about taking charge of your own health. Although most doctors do have incredible amounts of medical information and knowledge, there is so much to know these days that it is very hard for primary care doctors to be up to date on everything.

This is especially true for RLS, which is not taught in medical school (usually less than 1-5 minutes, if that) which contributes to doctor's ignorance on this topic. Luckily, this is changing as we educate the public and medical professionals about this very troublesome and often disabling disease.

Sent: Saturday, July 01, 2006 5:29 PM
Subject: RLS only during the day?

In all of the articles and correspondence about RLS, I have never seen anything that describes my own case. I get RLS attacks during the day ONLY - at night I sleep like a log without a twitch. Requip doesn't have any effect at all. Do you have any comment, please?

John P.,
Coarsegold.

Medical Reply

RLS is a sensory disorder. You must be awake to feel and be bothered by RLS so every RLS patient is exactly like you - they only have symptoms while awake. Just like back pain, when you are asleep, you do not suffer from this problem.

Most RLS patients (over 85%) have an associated motor problem called PLM. These are leg kicks that occur mostly while asleep but can also occur while awake. Often these leg movements are so subtle that the bed partner cannot notice them (but they can be picked up during a sleep study by sensitive EMG electrode monitoring).

Sent: Sunday, July 02, 2006 12:06 PM
Subject: Dose of Mirapex?

I AM 79 YEARS OLD AND HAVE RESTLESS LEGS FOR I do not know how long.  I have been taking .5 mg of Mirapex half at about 2oclock and the other half at 6oclock. right now the weather is very hot and it makes my legs worse. I am also on 1 to 1 and a half of clonazepam. My doctor does not know that much about RLS. I live in SMALL TOWN. I do not know how much is ok to take OF Mirapex. My doctor will give me what I want.

I would like some advice as to how to take Mirapex and when enough is enough. I also have insomnia which taking Mirapex does. not help. I have tried Requip but it made me sick. I hope you can understand my problem and give me some sort of advice.

Lorraine P.

Medical Reply

There is no set dose of Mirapex. It needs to be adjusted for your individual symptoms. Your dose is in the moderate range and can be raised (slowly) to about 1 mg per day if necessary (before worrying that you are too large a dose).

Sent: Sunday, July 02, 2006 9:43 PM
Subject: RLS and Trazodone?

I'm a 48 year old woman. I started taking trazodone in January 2006 for insomnia. 100 mg was ineffective, so the dosage was increased to 150 mg, once a day at night. I think it is causing/aggravating Restless Leg Syndrome. I describe the RLS as an insatiable urge to do leg presses. It seems to start off with achy knees and it seems as if relief would result from leg presses. I get these same symptoms even after I have worked out with weights (including leg presses).

Is there any evidence that the RLS could be made worse by the trazodone?

Kathy J.

Medical Reply

Trazodone is supposed to be RLS neutral but there are always exceptions to the rule. There are much better drugs for insomnia (although trazodone is often prescribed for sleep, most sleep specialists feel that this drug is not a great sleep medication) such as the non-benzodiazepines sleeping pills (Ambien, Sonata and Lunesta).

You may also want to note that although mild to moderate exercise helps RLS, vigorous exercise usually worsens it.

Sent: Monday, July 03, 2006 12:25 PM
Subject: Hyperthyroid and Mirapex?

I've take Mirapex 0.25 1/2 tablet each PM (or 1/4 BID if at a conference or on a plane for the day) for the past 6 years for RLS. It's done wonderful for me!

About 8 months ago I developed hyperthyroid and was diagnosed with a small goiter seen only on thyroid scan. What are the chances that the mirapex is causing the hyperthyroid.

Thanks
Mary E.

Medical Reply

There are no known reports or Mirapex causing thyroid problems.

ISent: Tuesday, July 04, 2006 8:53 AM
Subject: Long Term Ambien Use

I am 57 years old and developed kicking and upper body movements after 2 years on Effexor XR. I was diagnosed with PLMD with 27 arousals per hour with my sleep study. I stopped breathing 5 times in an hour. The Sleep Specialist wanted me to try a CPAP, and said it would possibly stop the PLMD. I have claustrophobia and can't handle the nasal canula in my nose. Can't tolerate Mirapex (nausea) Requip (extreme vertigo), but I have found that taking 5mg of Ambien 30 minutes before bed allows me to sleep through the night with the only side effect being slight amnesia (can't quickly recall names or things I know the answer to).

My wife says the kicking and slinging of my arms are still pretty bad, but the Ambien keeps me asleep.  I have tried to sleep without it, but the many arousals make me feel like a zombie the next day.....My question is this I have been on Ambien for 5 months, do you think it is safe for me to continue using it ? I plan on not stopping it, and should I take a holiday ? also, could I maybe switch to melatonin for the holiday? I don't care for my sleep doctor, but I would appreciate some direction from someone who knows.

Thank you so much for this valuable forum, it truly is a blessing of comfort to know the facts. I know I will be plagued with this for the rest of my life, but with sleep it is easier to deal with life.

Sleepless in the Carolinas

Medical Reply

t is quite possible that the Effexor XR is causing some (or most) of your PLMD problem. This drug is known to increase PLM and thus may be a big part of your problem. If you are taking the drug for anxiety or depression, you may want to consider changing to Wellbutrin XL which does not worsen PLM.

It is safe to take Ambien indefinitely without taking any drug holidays. There are very rare cases of dependence or tolerance occurring, but for most this is not really a concern.

Neurontin would be another choice of drug for treating PLMD. Interesting enough, there is one report of melatonin helping to reduce PLMD.

Sent: Tuesday, July 04, 2006 10:51 PM
Subject: Problems with Requip?

I have been reading through your Q & A Section. I have been diagnosed with RLS for over a year. I was first prescribed Klonopin, which caused me to be extremely foggy for much of the next day. I’ve been on Requip for about 6 months now at 2mg/day. My RLS symptoms are starting much earlier in the evening or late afternoon now and the Requip makes me extremely tired. I had the pharmacist break my 2 mg into .5 mg tablets, even one of these will make me sleepy, yet does not relieve the symptoms. I

s there a better course of treatment or am I stuck choosing between aggravating symptoms for the evening or relieving the symptoms and losing my evenings?

Lisa Reynolds

Medical Reply

It sounds as if you are experiencing augmentation with Requip. With the added problem of sedation from Requip, it is likely best that you get off of this drug. However, if you stop the Requip (or lower the dose slowly) you will experience worsening RLS symptoms for a while. This is best treated with painkillers.

Klonopin is a very long acting drug that I do not recommend for treating RLS or sleep. If you do need a sleeping pill, then the newer, shorter acting (no next day sedation) non-benzodiazepines are much preferred.

As far as maintenance therapy for your RLS (to replace Requip), there are several alternatives. Even though you had problems with one dopamine agonist (Requip) another one (Mirapex) may still work better (there is a great difference in individual response). There is of course, some increased risk to reproducing your current problems with another dopamine agonist.

Another option would be to replace Requip with gabapentin (or other anticonvulsants) and/or painkillers. Check our website for the various options in these classes of drugs.

Sent: Wednesday, July 05, 2006 2:36 AM
Subject: RLS and problems with Permax and Requip?

Have had this ongoing for years. It is genetic in our family.  Have been on Permax or Pergolide for about 10 years and is starting to be ineffective. My restlessness starts earlier in the day and now at night is in my shoulders also. I have had a sample of Requip and have been taking that earlier in the day and about 5 or 6 take the Pergolide. It is now 3 in the morning and having a bout with RLS .

I am not getting much sleep at night. Without something before church, I can hardly sit there. These last symptoms are rather new. Any suggestions?

Patricia F.

Medical Reply

You are getting augmentation (worsening of RLS from taking a dopamine agonists such as Permax resulting in earlier onset during the day of symptoms and spread of symptoms to the arms) from the Permax (pegolide) by itself or combined with Requip. Generally, we do not mix dopamine agonists (unless there is a very good reason). You should probably stop Permax and see if Requip alone will take care of your RLS without causing augmentation.

If Requip alone does not solve the problem then a change to painkillers and/or anticonvulsants would be wise.

Sent: Saturday, July 08, 2006 10:33 PM
Subject: RLS - Mirapex, Lexapro and fatigue, depression?

I've been taking Mirapex (0.25 mg) for about 6 years to treat RLS and it has been great. I am a 30 yr old healthy female. About 5 months ago I started taking 10 mg Lexapro for depression, which also worked. Over the next few weeks, my RLS symptoms grew worse, so I started taking more Mirapex (0.5 mg), which helped some. (I understand from reading letters on this site that Lexapro can make RLS worse.)

However, I also became very, very fatigued, to the point that I once fell asleep during a dinner! If I took both pills early in the evening, I fell asleep early. If I took them late, I felt very tired in the morning and almost could not get up out of bed. I'm trying to get off the Lexapro (now taking 5 mg/day) to fix all this, which I don't like being on anyway, and my RLS is better, but I'm worried about depression coming back.

I read on here that RLS can cause depression. I'm wondering if that is what happened to me and if I'll always have to be on an antidepressant. Could you please elaborate on the topic of RLS and depression and possible drug interactions for each?

Regards,
SMG

Medical Reply

Depression is often associated with RLS due to the untreated sleep deprivation and unrelenting RLS symptoms. Once treated, this associated depression will often go away.

However, if you have a separate problem with depression (which may be your case), then you do need an antidepressant medication. Most antidepressants (such as Lexapro) usually worsen, as you quickly found out. However, Wellbutrin may help your depression problems and is "RLS friendly". See if starting on that drug will take care of your depression symptoms.

There is no interaction between Lexapro and Mirapex. It may be that while on Lexapro, your RLS and possible PLMS (which also gets worse with SSRI drugs) may have affected your sleep to cause increased fatigue during the day. Otherwise, I do not have any explanation of this problem.

Sent: Sunday, July 09, 2006 7:50 PM
Subject: RLS not responding to Neurontin?

The last time I e-mailed you was Aug. 25, 2004. I don't know if you still have this information, but I am a 65 year old male and I've had RLS for approx. 20 years. I was taking hydrocodone 7.5/750 for about 4 years and became immune to it. My doctor put me on Requip which didn't work at all. After your e-mail the doctor put me on Ultram and Neurontin. Ultram 50mc, 2 at 5:30 PM and 2 at bedtime. Neurontin 300 mg, 3 at bedtime.

For the past 6 months they haven't been working for me. Would it be OK for either of these to be increased? If not, should I go back to the hydrocodone for a period of time or change to something else? At present I am up 2 or 3 times a night and can't sleep more than an hour during the day before they bother me. I would appreciate your advice on what to do. 

Daryl P.

Medical Reply

Your Neurontin dose is getting to the high end (we usually go up to a maximum of 1200 mg for a single dose) but you could consider increasing to the 1200 mg dose to see if it helps and is tolerated.

An alternative would be to change the Ultram to hydrocodone and seeing if that is helpful. If the hydrocodone stops working, you could always change back to Ultram and see if alternating these drugs is a helpful strategy.

Another choice would be to try Mirapex (which is similar to Requip but may works quite differently in any individual). This could be used alone or in combination with the above medications.

Sent: Monday, July 10, 2006 10:28 AM
Subject: Prevent augmentation by rotating Mirapex to Requip?

I am on Mirapex would like to switch to Requip for about 3 months and then switch back to prevent augmentation, can I do that and how .I know you cannot stop taking one just like that. Do I just slow down on Mirapex before starting Requip and slow down on Requip before starting Mirapex again. would this prevent augmentation.

thank you for your help. I am not sure if this would help

Lorraine P.

Medical Reply

We generally do not recommend changing drugs to prevent augmentation. Once augmentation does occur (and that is still a relatively small amount of RLS patients who use a dopamine agonist), we may consider changing to another dopamine agonist or discontinuing them entirely (or lowering the dose).

Changing from one dopamine agonist to another can be tricky as there is no fixed/exact relationship between their potency (Mirapex is 2-4 times as potent mg per mg as Requip but this can vary with each individual) so we have to guess somewhat as to what dose to use to replace the dopamine agonist that is currently being used (in your case, Mirapex). Also, side effects are similar among the dopamine agonists but can be quite different in any individual.

There is no set way to transition from one dopamine agonist to another (and as noted above, this may result in problems). Therefore we risk causing trouble when changing from Mirapex to Requip and this should only be done when medically necessary.

There is no evidence that switching will prevent the develop of augmentation. So, this is clearly not something we recommend doing in your case. The best strategy to prevent augmentation is to use the lowest dose of Mirapex that relieves your RLS symptoms. If you do develop problems with augmentation, discuss lowering (or stopping) Mirapex and add additional medication (from other classes of drugs) to treat your RLS.

Sent: Tuesday, July 11, 2006 3:05 PM
Subject: Can Lexapro increase RLS?

I am 46 years old and I have had RLS attacks only on occasion until recently. I have been on Lamictal for the past 6 years, and it has had no effect one way or another. I have been taking Lexapro 20 mg everyday for the past 2 months. Recently, I have had an increase of the attacks the past two weeks. I get the sensations in one leg only usually, and I have been getting them almost every night when I go to bed.

Can taking Lexapro increase the RLS attacks? I have tried stretching, Motrin, massaging...nothing seems to help but just give it time to let the symptoms work its way out.

Can I take Requip while taking Lamictal and Lexapro?

Tracy P.

Medical Reply

Lexapro is the likely culprit that is worsening your RLS. Most all antidepressant medications (especially the SSRI ones) worsen RLS.

You can take Requip while on Lamictal and Lexapro, but it may be a better idea to change Lexapro (if clinically warranted) to Wellbutrin which may take care of your depression or anxiety problem without bothering your RLS.

Sent: Tuesday, July 11, 2006 9:37 PM
Subject: RLS and allergy medicines?

First of all I want to express my gratitude for such a website and the ability to ask questions. Many of us would be at a loss without it. If one suspects they have allergies what would be the best medication to take? I know anything with Benadryl makes me climb the walls. I have noticed lately when I take 1/2 of Sinemet before bed my RLS gets very bad for about 45min. before it kicks in. If I don't take it the RLS starts bothering me later in the evening.

I just thought this was an odd thing to be happening. I have been taking only 3/4 or 1 Sinemet pill for a year but I still feel like it has augmented the RLS. I was going to ask my doctor for Mirapex or Neurontin. What do you think would be best?

I really didn't have terrible RLS until I took the Sinemet regularly. I also substituted Sinemet for the temazepam and feel that getting off temazepam might have caused worsening RLS. It would be difficult to completely stop everything at once. I am sure I wouldn't sleep-just shoot me

Elaine

Medical Reply

Low doses of Sinemet (less than 2 of the 25/100 tablets per day) generally do not cause augmentation. It is likely that you are not having augmentation problems from the Sinemet but rather that your RLS may be worsening (although anything is possible).

Sinemet should be taken 30-60 minutes before bedtime to make sure it works (as that is the lag time to make it work). However, Requip or Mirapex are much better choices (but they also need to be taken 1-2 hours before bedtime).

For colds, Claritin over the counter or prescription Clarinex and Allegra do not cross into the brain and therefore do not worsen RLS. Benadryl definitely worsens RLS.

Sent: Wednesday, July 12, 2006 12:04 PM
Subject: My ongoing RLS (Canadian sufferer)

For your reference, I first emailed you on May 9, 2001, and you promptly responded to me on that same day. At this time, I need your help again.

Back in 2001, upon your recommendation, I was able to persuade my general practitioner to prescribe Mirapex for my RLS. For the previous 12 years, the only medication I had been prescribed for my RLS was Nitrazepam…….. usually 5 mg/night (before going to bed). Occasionally I would have to take 10 mg.

I’m pleased to report that the Mirapex has been working quite well. I started back in 2001 with 1x.25 mg tablet/night, and this dosage gave me substantial relief most evenings. However, this dosage has gradually increased to 3, sometimes 4 x.25 mg/night, and I am finding even at this dosage that there are more and more evenings where I am unable to sleep because of my RLS. Along with the Mirapex, I continue to take a 5 mg Nitrazepam tablet nightly.

I’m pleased to report that with the above medications and dosages I have not experienced any significant side effects. I am reluctant to switch to other medications as the Mirapex seems to suit me, but would like your comments on my rate of escalation of Mirapex dosage. Is there a recommended limit?

Pat K.
Niagara-on-the-Lake, Ontario (formerly Collingwood Ont.)

Medical Reply

For Mirapex, .75 to 1 mg is considered to be a high dose. There are patients who go higher (up to 1.5 mg or so) but those are the exceptions and usually have very severe RLS. Your dose escalation may indicate that your are getting tolerant to Mirapex or that your disease is worsening and therefore you need more medication. It is often hard to differentiate between these two issues except when the tolerance occurs within a few months (RLS usually worsens over several years or decades).

It is hard to say whether you should be concerned about the increase in your dose at this time. I would probably watch for a while before changing medication. The addition of Neurontin (gabapentin) at 300-600 mg may be helpful and allow you to reduce the dose of Mirapex.

Sent: Wednesday, July 12, 2006 9:27 AM
Subject: Meds follow-up question

I've written you a couple times recently. Quick background: Really bad RLS for past year. I've been dealing with withdrawal from Klonopin and Restoril (I'd been taking 2mgs and 30mgs a night, respectively, for past 9 months), and have been totally off benzodiazepines now for exactly 2 weeks--started coming off the drugs 6 weeks ago (I realize that may have been a bit quick). Started taking Mirapex 6 weeks ago, and slowly increased dosage to current max. prescribed level: .5 mg.

Problem: symptoms don't seem to be going away. They're definitely much better than what things were like before I started benzodiazepine treatment (understatement of the year), but simply not doing the job (after about 4-5 hours sleep, the rest of the night is hell). When I increased Mirapex dosage last couple times, there was no benefit. In fact, I think the increases may have actually augmented both my daytime and night-time RLS symptoms, but I'm not sure.

Only other piece of relevant background material: I have strong substance abuse history, which is why I hated being on benzodiazepines and asked to come off (also benzodiazepines were reducing effectiveness, and increasing meds any more seemed ridiculous to me). They did not want to put me on dopamine agonist, because of several drug-induced psychotic episodes I had three years ago (sober since, with no psychosis recurring). Ideally, no drugs would be fabulous, but things are rarely ideal. Going back to benzodiazepines is not an option, and painkillers like vicodin and Percocet are not an option. Would really like to be on as little dopamine agonist meds as possible. Also, Neurontin and sleeping meds were totally ineffective. Though Neurontin did help me some with my neuropathy pain.

Questions:
Should I stay at .5 mg Mirapex, or since little benefit is seen, try going back down?
or,
Should I ask to try Requip, or would there be no benefit, as it is so similar?

Should I try going down on the Mirapex to a much lower dosage and take Ultram, which I already have (as needed, for neck/back pain, but not RLS)? Or, should I be as wary of trying Ultram as vicodin?

Head is still really foggy and nervous system so messed up due to benzodiazepine withdrawal--should I wait longer before changing anything? And if so, how long should I give head to "clear up" and make decision about changing meds? Is it possible Mirapex is causing heavy head and brain fog, or am I right in assuming this is probably due to benzodiazepine withdrawal (which was pretty brutal)?

Should I try coming off everything?...as far as this is concerned, RLS started out of blue almost a year ago. In addition to starting benzodiazepine treatment, they (the VA hospital, I'm a veteran) did some blood work and found I was iron deficient. I've been on Iron supplements for almost seven months now. Is this worth a shot, or probably not likely, as I have strong symptoms right now with Mirapex?

Michael

Medical Reply

Requip would likely be similar to Mirapex but one never knows until trying it. Some patients do much better on one dopamine agonist than another.

Assuming that you either stay on the same dose of Mirapex (I would not increase the dose over .5 mg as higher doses did not help in the past). You might then try to add Neurontin (up to 1200 mg) in the evening and see whether it works better in combination with Mirapex rather than when taken alone.

If that does not work, then adding Ultram once a day should be effective (in addition to Mirapex) and very safe. Ultram is much less addictive than the true opioids and when taken only once a day should rarely, if ever cause tolerance/dependence. If the Ultram does not last long enough, there is a newer form called Ultram ER which last much longer (but will be much more expensive than generic Ultram).

Sent: Sunday, July 16, 2006 10:49 PM
Subject: RLS, tremor and herniated discs?

I am 49 year old woman waiting for back surgery to relieve 3 herniated discs. I have had RLS longer than the back problem but the restless leg problem is worse now. I plan to ask my doctor about treatment for it. I am on Prozac 40 mg a day for depression and do not correlate symptoms with taking this medication. Also, I have a tremor in my hands and that seems to have gotten worse as I am getting older. I can rest my hands unlike my legs but I was wondering if there is any connection with the RLS. Would taking a Parkinson's disease medication help both problems?

My father also has hands that tremor and has had this problem as long as I can remember. I did discuss the tremors with a neurologist and he suggested taking anti-seizure medication but I declined due to the side effects. I am a painter and have found it difficult to paint detail with the unsteady hands.

Any help would be appreciated.

Medical Reply

Tremor is not a part of RLS or related to it in any way. It sounds like you have an essential tremor which would not be improved by Parkinson's disease drugs (but does respond to other drugs).

You may still want to consider the dopamine agonists (Requip or Mirapex, which are both Parkinson's disease drugs) for your RLS.

Sent: Sunday, July 16, 2006 11:31 PM
Subject: Giving up

I have been taking .50 mg of Requip for about 6 months now and am no longer getting relief. The RLS is definitely worse with pain and burning in my feet. I am also taking 3 mg of Lunesta and Benicar 20 Vytorin 20mg. I am having a terrible time sleeping now and have neck and pain in my cheeks and jaw during the day.

I also suffer from daily headaches sometime turning into migraines. I also take and occasional Phenergan .25 mg for nausea from the Vytorin. I would appreciate any suggestions as where to proceed.

Nancy S.

Medical Reply

The Phenergan (and most other anti-nausea medications) cause worsening of RLS, so beware of taking them.

You may want to consider adding gabapentin (Neurontin) which may help your RLS and the burning in your feet (which may be part of a neuropathy).

Sent: Monday, July 17, 2006 10:27 PM
Subject: Requip helping as soon as I take the pill?

I take Requip 1 mg every night before bed. If I forget to take it with me when I go away i try to sleep without it but find that my legs are more restless. It gets to the point where I drive home to get the medication but as soon as I take it I am better. I know that the medication does not work that fast so my question to you is, is this all in my head and what do I do to stop myself from feeling like I need to take the Requip?

Any suggestions would be appreciated!
Lora L.

Medical Reply

It generally takes about an hour for the Requip to kick in. However, some may notice relief in less than 15 minutes (on an empty stomach). However, there may be an additional placebo effect from taking the medication (which may account for its quick onset of action in your case).

Sent: Monday, July 17, 2006 11:19 PM
Subject: Requip questions

I have suffered with RLS my entire life. After suffering a back injury from kickboxing, I discovered Ultram, which has given me 7 years of blissful relief. Unfortunately, I have had to gradually increase my dose and it is now at 200 mg once nightly.

My doctor thought that was a bit high and she switched me to Requip. This is my second night and I am still awake.

I have 2 questions:
1) After the ramp up period, can I expect better results?
2) During the ramp up period can I continue to take Ultram (at a lower dose perhaps) or another opiate so I can sleep?

Susan M.

Medical Reply

You should get better results (complete relief) once you arrive at the correct dose (for you). You can use a painkiller while titrating up on the Requip dose, but only take it if the Requip is not helping (if you take it along with the Requip then you will not know which drug is relieving your RLS symptoms).

Sent: Wednesday, July 19, 2006 7:02 AM
Subject: RLS and strange results with Neurontin?

I have been taking Requip for a little less than a year. At first it helped. Now it doesn't work very well, and I am experiencing symptoms throughout my body including the trunk even when I awake. Last night I added 600 mg Neurontin to the Requip.

I FINALLY slept but awoke all discombobulated with many twitches and jerking throughout my body. Pain behind my eyes, like I've been dreaming all night and still very tired. It's like I can hardly connect my body with my mind. Yet my mind is racing around trying to figure out what the heck is happening.

Help!
Karen

Medical Reply

It sounds as if you are having augmentation from Requip (worsening of RLS from taking the Requip). You may need to change the drug to something else. Neurontin should be started at 300 mg (or even lower) and slowly increased or side effects (usually sedation such as you have described) are common.

While getting off of the Requip, painkillers may be very helpful to control your RLS.

Sent: Thursday, July 20, 2006 1:01 PM
Subject: Remeron & RLS

Just wanted to let you know that I have RLS, and have been taking Remeron for 9 days to treat depression. I have taken several other antidepressants that either didn't work, or made my RLS worse. I suggested Remeron to my physician after reading about it on your website.

Prior to Remeron, my RLS was fairly well controlled with clonazepam, acupuncture, and a homeopathic remedy. Symptoms had generally been reduced to my right foot jerking at the ankle every 4-5 nights, as opposed to full leg jerking nightly. Since starting Remeron, my foot jerking occurs every night, sometimes going into leg jerking (first 1 leg then the other). Also, on some nights, I woke up with my leg either jerking, or "wanting to jerk."

I don't know how much longer I will be using Remeron; I see my physician tomorrow. I am getting better sleep, once I get to sleep. But having a long history of depression, insomnia (difficulty falling asleep & maintaining sleep that preceded RLS by decades), and RLS makes finding appropriate medical management a challenge.

You might want to update your website description of Remeron to say that there have been 3 cases reported of Remeron worsening RLS, not 2.

Thanks for all the great info provided.

Marnee F.

Medical Reply

The 2 cases referred to on our website are cases that have been reported in the medical literature. There are many more anecdotal cases (such as yours, including several others on our website) that have not yet been formally reported on in a medical journal. We suggest that Remeron be taken very cautiously by RLS sufferers.

Sent: Thursday, July 20, 2006 8:19 PM
Subject: Getting to sleep with a Yoga Ball

I haven't written in a long time. Mirapex did not work for me. It gave me other problems and I refuse to take Requip because I might get those other problems again.

However, my legs are still going to "beat the band". I now have resorted to going to bed with my yoga ball, laying down and putting my legs on top of the ball and bouncing my legs until I get to sleep. The ball usually falls off the bed once it knows "I'm asleep".  It can't hurt to try.

Margaret M.

Medical Reply

Thanks for writing about your RLS treatment. If you do need more help, Neurontin or painkillers would be a good choice.

Sent: Friday, July 21, 2006 4:18 PM
Subject: Halcion as treatment for a root canal for a patient with RLS?

I was wondering if Halcion would make my legs go wild. I am scheduled for a root canal and they said if I choose they can administer this and I would be out. If I take a single Sinemet or Requip the night before, will it be alright?  I did not want any major drug interaction.

Elaine

Medical Reply

Halcion (triazolam) is a benzodiazepine sleeping pill. If it does put you to sleep (and it may or may not do that) then your legs will be fine. It probably would be wise to take a Sinemet or Requip 30 minutes before your root canal. There are no drug interactions between Halcion and Sinemet or Requip.

Sent: Saturday, July 22, 2006 7:31 AM

I have been on Mirapex .125 for PLMD for 2 years and have severe augmentation. My doctor gave me Requip starter kit this week and I had the worst headache of my life last night. I just read an answer of yours that said not to from Mirapex to Requip. Was that the cause of the headaches? I thought maybe I titrated to fast, was up to .5 in 3 days, or should I just forget it and try something else.

I loved Mirapex for a year and a half, my leg movements are in the almost 60 an hour range, now anytime after 3 pm.  My doctor doesn't know all the treatments and she is not keen on pain meds, although they help me in a pinch. Tonight I am taking a break from both medications, and expect it to be a nightmare.

Maureen M.

Medical Reply

The reason not to switch from Mirapex to Requip is only because of causing the same dopamine drug side effects (which may or may not occur). Often (as in your case) different problems will emerge with each drug.

It may be better to switch to Neurontin and see if that helps your PLMD problem.

Sent: Sunday, July 23, 2006 7:52 PM
Subject: Cymbalta

I have taken antidepressants for over 20 years, and have been taking Mirapex for RLS for about five years. My antidepressants aren't working too well, and was considering Cymbalta. Would it be a good choice to mix with Mirapex, or would it have some good effects of its own since it inhibits the reuptake of norepinephrine?

I don't understand the dopamine factor in either condition.

Jan W.

Medical Reply

Cymbalta has no reaction with Mirapex. However, even though Cymbalta increases norepinephrine levels (by inhibiting its reuptake into the nerve endings where it gets metabolized) it also increases serotonin levels and does so almost as much as the SSRI antidepressants (like Prozac, Lexapro, etc.). Therefore it usually worsens RLS rather than helping it.

Dopamine drugs (like Mirapex) may help depression (at doses higher than those used for RLS) but this is a very minor effect. The dopamine drugs do help RLS as you have already noticed.

A Reply from Jan W.

Sent: Monday, July 24, 2006 2:17 PM
Subject: Re: Cymbalta


Thanks for the info. I took Tofranil for twenty years, which worked very well for depression, but at some point, the doctor said it was probably contributory to RLS. Now I'm taking Paxil CR, which isn't working the best. Do you have any suggestions for a better antidepressant that won't exacerbate RLS? Thanks.

Jan W.

Medical Reply

Wellbutrin is one of the better antidepressants that does not worsen RLS. It is generally our first suggestion for RLS patients who need an antidepressant.

Sent: Monday, July 24, 2006 4:55 AM
Subject: RLS and medications?

I am a 60 year old female with worsening RLS/anxiety in my feet and hands upon trying to sleep at night. The last three months have worsened and so has the weather...rainy damp humid as is my apartment and wouldn't u know it that I have huge allergy to molds and with a yeast infection. My doctor has prescribed numerous anti-anxiety medications-antidepressants of which over four years now on trazodone which makes me sleepy but not symptom free. 

He also prescribed Requip and it did nothing for me.  I hallucinated on Remeron. The horrific burning of feet and even to touch is a real kicker. I am at my wits end.

Lynn in Canada

Medical Reply

 A trial of Mirapex is still in order even though you did not respond to Requip (although we do not know if you have been given an adequate dose to fully test whether this drug can help you). If that does not help, then a trial of Neurontin (gabapentin) or a painkiller should be very helpful.

Antidepressant medications do not help RLS (in fact, almost all of them worsen RLS). If you do need an anti-anxiety/anti-depressant medication then Wellbutrin would be the best choice.

A Reply from Lynn.

Sent: Tuesday, July 25, 2006 4:12 AM
Subject: Re: RLS and medications?

Does Mirapex work like Requip? Also, on Aerius for seasonal allergies hence maybe the huge flare up...went off it yesterday. The horrific anxiety is really what gets to me upon being in the supine position ready for sleep...although not so bad last night. I truly need an anti-anxiety so will look into Wellbutrin...btw huge mold problem here and have yeast infections upon yeast infections, finished Diflucan last week; any relationship to RLS?   

Lynn  

Medical Reply

Aerius (Clarinex here in the USA) does not cross into the brain and should not bother RLS. Diflucan and yeast infections also have no relationship to RLS.  Mirapex is quite similar in action to Requip but may work quite differently in given individuals.

Sent: Monday, July 24, 2006 7:58 AM
Subject: RLS worsening with Requip.

I started having RLS when I was 16. I am 40 now. The symptoms have been getting worse with age. I heard about Requip, and asked the doctor if I could try it. I took it for a month, during which time it became less useful, and the RLS got worse except for the first couple of hours after taking the drug. I also started to hallucinate. Requip was making me feel sick and dizzy, and effecting my mood to where I would be very snappy all the time.

I stopped taking Requip two weeks ago, and now am hardly sleeping at all. The symptoms of the RLS are so much worse that my legs continually jerk HARD, and I am for the first time experiencing similar jerking in the arms. This only happens when sitting or lying down. I am getting a LOT of housework done, since I can't sit or sleep, but I know that the lack of sleep is taking a toll on my health.

Do you have any suggestions? I used to find relief with hot baths and exercise, but they no longer help.

Patricia T. 

Medical Reply

It sounds as if you developed augmentation or tolerance to Requip (although it generally takes a few months or longer for most to develop this problem). At this point, it would be best to consider an anticonvulsant drug (such as Neurontin) or a painkiller (such as Ultram or a narcotic). That should take care of your current symptoms.

Sent: Tuesday, July 25, 2006 12:03 AM
Subject: RLS and Marijuana

I have suffered from what I believe to be RLS for as long as I can remember. As a child my mother would tell me the the sensations in my legs were just growing pains and to try to go back to sleep. Now I am 36 and am still experiencing these "growing pains". I have been an avid marijuana smoker for many years and looking back now I have noticed that when I smoke marijuana in the night I don't experience the sensations.

Recently I have been searching out new employment so have stopped smoking because so many company's are drug testing. Since stopping my marijuana use the RLS sensations have gotten worse on a daily basis. It is to the point now where I can be so tired I cant keep my eyes open yet the feeling of restlessness in my legs will not allow me to sleep. The feeling is not confined to my legs, as the evening goes on the sensations go into my stomach, chest, and arms.

I am going to consult a physician but there are so many drugs that are talked about on your site I am not sure what would be right for me. Should I ask to be put on something specific like Requip, Mirapex or Marinol? When discussing my history with my doctor would it be important to discuss my marijuana use in the past and how it has effected the sensations? I have researched these 3 drugs and I do realize Marinol does contain THC, would my doctor be more or less inclined to prescribe this for me?

I would like to stay away from drugs like codeine, OxyContin and the like because of the addictiveness and the negative effects on the kidneys and other vital organs. Thank you for taking the time to read my letter, and for having such an informative site. Any advise would be greatly appreciated.

Brad P. 

Medical Reply

Requip or Mirapex would be your best choices. Marijuana typically has a dramatic effect on improving RLS. Marinol has a very modest effect on RLS (at best) despite its THC content. That is because the blood levels that result from Marinol are very low compared to smoking marijuana. You can mention that marijuana has helped your RLS but that really does not figure at all in your treatment for RLS.

OxyContin, methadone and other painkillers are not first line drugs for RLS but can be used very effectively and safely if prescribed appropriately.

Sent: Tuesday, July 25, 2006 4:21 PM
Subject: Re: Mirapex woes (previous letter on Monday, February 13, 2006 2:28 AM)

I finally found a doctor (pain specialist) who prescribed methadone for me and started it 4 days ago. 5 mg every 12 hours does a very good job of alleviating most of the RLS symptoms. I'm still using .25 mg of Mirapex at night and am tapering it off. I am, however having rather severe side effects from the methadone, nausea, dizziness and tiredness. Will this go away with continued use?

I spoke with my pain specialist's nurse who told me to discontinue the methadone, but I just won't. The relief I'm getting from RLS is just too great and I won't go back. Any suggestions? The side effects didn't start right away, but took a couple of days, also, I can wait 14-16 hours between doses and the nausea and dizziness don't go away.

Brenda 

Medical Reply

Usually the side effects from methadone (and most other medications) occur immediately and then may (or may not) get better with continued use. Unfortunately, most anti-nausea medications make RLS worse (except the very expensive Kytril or Zofran) which makes you side effects hard to treat.

You may want to switch to oxycodone (which may work as well as methadone for RLS) and hope that it does not share the nausea side effect.

Sent: Tuesday, July 25, 2006 9:46 PM
Subject: Restless leg syndrome better with quinine/tonic water?

I have RLS and when I asked my doctor if there is anything other than medications that will help me. He told me that I should drink Tonic water. He said that it has the same ingredient as the medication that is prescribed for RLS -- Quinine Hydrochloride.

Is this safe and are there any adverse risks of taking this? Will it interact with any medications? Can it cause cancer? I heard it was banned in the U.S. I don't know what to do. I don't want to get sick from taking it.

Bonnie 

Medical Reply

Tonic water does contain quinine and works very well for leg (or other muscular cramps). However, it has no role at all for treating RLS (although many doctors mistakenly prescribe it for RLS).

The drug is not banned in the US but it has changed from an OTC drug (about 10 years ago) to a prescription drug. It can cause blood problem on rare occasions, but most people tolerate the drug quite well.

Sent: Tuesday, July 25, 2006 11:48 PM
Subject: RLS update

I have an update for you and some more questions. I have used Sinemet, Mirapex, Requip, Gabapentin and Tramadol. I developed augmentation with the Sinemet and only found slight relief from the Mirapex and Requip (maybe 25%, sometimes nothing). Gabapentin worked the first day or so and then did nothing at 300 mg and still nothing when increasing to 600 mg. Tramadol barely does a thing. The sides of the above listed meds had me walking around like a zombie.

My doctor finally put me on oxycodone which works awesome. I take an average of 10mg a day. The amount I take varies due to work. I am a police officer and cannot take any within 6 hours of work nor will I take if I have chores to run on my days off. I will take anywhere from 5-15 mg a day.

My question is, is this a low or high dose? What is the average dose you have seen patients taking when on oxy long term?

My doctor also seems uncomfortable about writing the script. I have documented every date, time and dosage of oxy I take. My doc still eluded at being duped and thinks maybe she has misdiagnosed me with RLS and is thinking it may be something else (though she did not mention what else it could be). I have now be referred to a neuro for further. It may take 2-4 months to get in to be seen. She indicated she will continue with the oxy until I see the neurologist. I am feeling quite frustrated now as I am on something that works and have a feeling I will be sent back to square one again.

What might I expect from a neurologist?  I saw a post on a drug named Xyrem for RLS. What are your thoughts?

Rosco

Medical Reply

Oxycodone at 10 mg per day should be very safe. I prefer using methadone (which is very similar and probably equally potent for both pain and RLS) as it tends to last longer than regular oxycodone (not as long as the sustained-release OxyContin) and may even be less addictive. The range of oxycodone usually used for RLS is about 5-30 mg per day, so your dose is on the lower end for this drug.

Unfortunately, most doctors are not that well versed in using the potent narcotics for pain or RLS and get very uneasy when asked to prescribe them for long term use. Some neurologists may have more knowledge and be more comfortable prescribing adequate amounts of opioids for RLS, but that can vary considerably.

Xyrem ( GBH, gamma hydroxybutyrate, also known as the date rape drug) has no role in RLS but rather works well (and is only approved) for narcolepsy.

I do not know of any good RLS doctors (neurologists or otherwise) in AZ.

Sent: Wednesday, July 26, 2006 6:18 AM
Subject: Insomnia with Mirapex?

Hello. I have had RLS for 7 or 8 years, starting at about age 60 or 61. I am on 1 mg of Mirapex , having started at .125 mg years ago. I take it 2 or 3, or even 4, hours before bed, on an empty stomach (taking it after dinner makes the effectiveness almost nil). I think at this point what I have is called recalcitrant RLS, because I get it anyway, say around 730 or 8:00, endure it for a while, then blessedly go to bed and immediately fall asleep (9:30 or 10), but invariably awaken after 3 or 4 hours and usually don't fall back to sleep.

I am getting increasingly exhausted, have had recurrences of breast cancer in the last few years (maybe as a result of this lack of sleep?), and feel like my life is getting so restricted and I am getting so very tired, and tired of it. My neurologist claims there is no connection between Mirapex and insomnia. Yet on the drug info. I read that there may be.

What is your opinion and what can I do? Last night I took a Lunesta to get me back to sleep and within s short time I had one of the worst RLS nights ever! Help! By the way one thing that is giving me hope re the RLS is that I have had, until last night, some improvement with neurofeedback. It has helped the RLS but not the insomnia, so I still awaken exhausted, and cannot usually nap during the day (RLS). I have tried Ambien, and one or two others; nothing seems to help sleeping. Hydrocodone does help, but although I feel good the next day, if I take it for a few days I get emotionally strung out. And very constipated.

Neurontin 330mg. made me feel like a total zombie the next day. I seem to be super-sensitive to drugs, even the sleeping pills, as far as side effects are concerned. Methadone, I understand ,is terrible for the liver. Is this true? I guess like everyone I am looking for something with no harmful effects.

I would be so grateful for some help!
Gyana in Taos

Medical Reply

Taking Mirapex with food will delay the onset of action and may decrease its effect somewhat. Mirapex can certainly cause insomnia (although others complain of excessive sleepiness).

Taking methadone (as long as it does not constipate you) may be very helpful in addition to the Requip. Methadone does not affect the liver, so do not worry about that (it is actually a very safe drug).

Sent: Wednesday, July 26, 2006 4:16 PM
Subject: New symptom of vibrating in my left foot?

I have had RLS for many years, since I was in my 20s and am now 65 years old. The last 4 years have I been treated with Mirapex but recently I have had to increase the dosage to 4 pills at bedtime and that doesn't always help. I also take 1/2 an Ambien to sleep. Now I have a new symptom, starting only yesterday.

The bottom, outside of my left foot feels like it's vibrating.  I can feel an electrical current pulsating in my foot. It keeps me awake and is causing anxiety because I cannot sleep.  Eventually the Mirapex (or the Ambien) takes effect.

Does anyone else have this feeling?  Is this also an RLS symptom?

Dorothy

Medical Reply

You can decide whether the vibrating feeling is part of your RLS if it gets better with movement then returns with rest. Neurontin or a painkiller taken before bed (about 1 hour before) should take care of your new symptoms.

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