Patient letters on RLS symptoms and remedies- Page 64

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

Sent: Sunday, November 13, 2005 8:56 AM
Subject: Nausea with Requip?

I recently started taking Requip (1 mg) and am elated at finally getting relief from RLS. The problem is that I am experiencing moderate to severe nausea throughout the day, which is nearly as disruptive to the quality of my life as the RLS. Antacids are not helping. Can you suggest anything to help with the nausea?

Andrea S.

Medical Reply

Taking the Requip with food often helps. You can also see if lowering the dose (perhaps to .75 mg or .5 mg) which may also help. If that does not work, then perhaps a change to Mirapex may be helpful.

Sent: Sunday, November 13, 2005 6:25 PM
Subject: new study on the effects of anti-depressants and RLS

I ran across this in Medscape (http://www.medscape.com/internalmedicine-home) and would appreciate a response from the doctor:

The chronic problem of RLS has gained increasing attention over the past few years, and both media awareness and educational programs have been enhanced by the recent pharmaceutical industry interest in this disorder.

RLS involves a very disconcerting motor restlessness (similar to the akathisia that is associated with antipsychotic medications) that occurs mostly in the evening when patients are at rest. This restlessness often leads to sleep-onset difficulty and the complaint of insomnia. Most RLS patients also experience periodic limb movements during sleep, and these movements may further undermine sleep quality.

Many antidepressant medications are known to increase the risk of these involuntary movements during sleep, and it has been assumed that people taking antidepressants also have increased risk for RLS. Brown and colleagues[13] conducted a systematic retrospective analysis of patients evaluated for sleep-onset insomnia and found no association between antidepressant use and RLS symptoms. This is good news, because psychiatric patients on antidepressants who experience RLS will not have their symptoms prematurely attributed to medication use.


John H.,
Houston, TX

Medical Reply

This is only one study (and just recently published in Sleep Medicine in Sept. 2005) that needs to be duplicated to be sure that it is correct. They retrospectively studied 200 patients and their conclusions may be correct but we need more evidence. I have seen many RLS patients who have had their symptoms worsened by antidepressant medication, but this does need to be studied further.

Sent: Monday, November 14, 2005 5:32 AM
Subject: RE: Cabaser

I emailed you a few months back regarding my RLS & PLMD, I followed your advice and in consultation with my GP, increased my doge of Cabaser – to no avail. I then started on the drug marketed as Repreve in Australia – (Ropinirole) – initially I found some relief was achieved ( I have now used the drug for about 3 months). 

I am now taking 2 mg before bed and find that I am now more aware of my symptoms than any other stage of my life. I now cannot keep still during the short 35 minute car ride home from work ( symptoms appear worse towards the end of the day) and at its worse, I even feel the need to move and stretch my arms , calf muscles, fingers and toes. I am getting little sleep unless I use sedatives.

What other options should I investigate?
Carol S.

Medical Reply

When the dopamine agonists do not work (Cabaser and ropinirole) then gabapentin (an anticonvulsant drug) or painkiller are the next choices. Small daily doses of painkillers tend to be the most effective and have the least amount of side effects. Choices include propxyphene, codeine, hydrocodone or the non-narcotic tramadol.

Gabapentin works well for some RLS sufferers but generally side effects (usually sedation) limit its use.

Sent: Monday, November 14, 2005 2:17 PM
Subject: RLS and Mirapex dose timing?

I have had RLS for I imagine all my life, I am 68. As a little girl my Dad would be up nearly all night with me rubbing my legs etc. My parents were completely distraught because no doctor anywhere could help. I also have had all my life what was then called nervous stomach, fibrositis, and dry mouth, very cold feet and legs with Peripheral neuropathy. Come to find out in the past 10 years or so since my newly diagnoses I have now and have had for many years, FMS/RLS/CFS/Sjogren's Syndrome/ Peripheral Neuropathy/Raynaud's syndrome, I could go on but these are the worst.

My MD just put me on Mirapex after trying Requip which made me deathly sick. The Mirapex is not doing as good as the Sinemet that I have been taking with my Ambien. I also am on Vicodin and Tramadol, Exoxac, Prozac, (but have quit that because I was told the Sinemet does not work well with Prozac) Neurontin.

If I go back on the Mirapex, should it be taken a few hours before bed or not? My RX is written as such: Take 1 before bed and if not working take one at suppertime and one at bedtime. How long should I give it a try? I am so tired of walking the floor, hitting my legs, rubbing my legs, using heat, etc. etc.

I know this with FMS and the other junk is not good so I guess I am a mess, but I keep on truckin" because If I stop I would fold up. I had to medically retire about 10 years ago from my profession as a medical transcriptionist and go on disability. Now of course it is Medicare.

God bless all of you with this horrible autoimmune disease.
Barbara B.

Medical Reply

Mirapex should be taken about 1-3 hours before RLS symptoms begin.

Sent: Monday, November 14, 2005 4:26 PM
Subject: RLS in my back?

I am interested in asking about my RLS & the symptoms of it now crawling up my back.

I watched my Grandfather suffer with this for 40 years. I was able to see RLS creeping into my life for years before I finally sought out help by a Neurologist. He prescribed Mirapex 2 x .0125 mg at night & now I am up to 3 at night & one more during the day if it creeps in (it’s only happened a few times) & it is a lifesaver for me & my husband.

Now I have noticed at times it seems to be in my lower back as well. I have never heard anyone speak of RLS affecting their lower back at all but I know I saw my 102 year old grandfather suffer by sitting up & forward in his recliner & rocking back & forth & he moved his arms & hands as well. [I first noticed RLS in my legs as I had just gotten comfortable after a hard day in my recliner & my grandfather spent his last 10 years in a recliner, so maybe there is a parallel there about recliners!

So have you heard of it affecting the lower back? I would like to know what to expect.
Connie T.

Medical Reply

Although RLS usually affects the legs first then may go to the arms, it can occur almost anywhere in the body. The back, chest, and neck are not that unusual sites for RLS symptoms.

Sent: Monday, November 14, 2005 7:21 PM
Subject: Pregnant, with RLS

Are any RLS meds safe to take during pregnancy? While breastfeeding? I first recall RLS symptoms when I was around 14. I am now 39 and pregnant and it continues to get worse. Sleepless night and them movement is so bad, my husband and I have to sleep in separate beds. I prefer not taking any meds, but have read some of your posts and understand that you don't have many success stories with natural remedies. I read the side effects of Requip ("seeing" and "hearing" things that aren't there, etc...) and that concerned me. I'm also worried that the drug is so new. I am not familiar with the side effects of Mirapex.

Also, can you recommend someone that specializes in RLS in my area? None of my regular doctors (primary care, obgyn, etc...) have even heard of RLS. It's very frustrating. What type of Specialist should I look for? I am not interested in just paying for a sleep study, only to be told the obvious- that I have RLS and PLMD.

Ginamarie S.
Boca Raton, FL

Medical Reply

You do not need a sleep study. Sleep specialists and neurologists are generally the most knowledgeable about RLS.

For pregnant RLS sufferers, narcotics such as methadone (class B) are considered the safest. This is also the safest of all the possible RLS drugs for breast feeding.

Mirapex and Requip are very safe (for those who are not pregnant or breast feeding), although some do have trouble with these medications (as with almost all other drugs). Hallucinations with Mirapex and Requip occur very infrequently and then only at the high doses given for Parkinson's disease. Natural remedies help very few RLS sufferers (probably as successful as sugar pills).

Sent: Tuesday, November 15, 2005 9:56 PM
Subject: RLS Sufferer while pregnant

I need help. I am 22 years old and have suffered from RLS for 2 years. I feel like my symptoms are a little worse than others. It is just not my legs that jerk and cramp, it is my whole body. The major problem is is that I am 24 weeks pregnant. I was on Ultram for the first 3 months, taking 8 pills a day, and now I am on Percocet because the ob-gyn says that it is safer. I guess it is in Category B. I take 1-2 every six hours, but now my ob-gyn is saying that he is uncomfortable prescribing me the meds because he knows nothing about RLS.

I can't see a neurologist because I can't afford 300.00 per visit and they have all said that they could not treat me with meds while pregnant and pain meds are all that has ever worked on me. I have tried Neurontin, Quinine, Mirapex, Sinemet, and so many others with no relief, along with trying iron and magnesium supplements. Now I am having to go to the ER to get my meds and they do not like giving me Percocet while pregnant or at all. I am so afraid that something will be wrong with this baby.

I am also on Klonopin for my anxiety attacks, which are getting worse from having to go through this. I hate having to take these meds but I don't know what else to do. Most doctors treat me as a pill junkie and they are so wrong. I really need some help and advice. Most doctors have no idea how severe RLS feels and it angers me.

 never get any sleep because I am constantly worrying about this. I pray to God that my baby comes out safe and that I can find a doctor who truly understands what I am going through.

Jamie,
Florida

Medical Reply

Percocet is Category B, but only for short term use. Methadone is actually a little better and may be even safer (at low dose).

Klonopin is Category D and should not be taken during pregnancy. If you need something to help you sleep, Ambien is Category B and can be used for that purpose.

Sent: Saturday, November 19, 2005 1:43 AM
Subject: Kidney Disease

My husband is currently on home dialysis for renal failure. He never had a problem with restless legs until this happened and he says it's the worst part of his kidney disease. He has taken Clonazepam and still does sometimes, but is now taking Levodopa 100/25, two a day. It's been about a month and symptoms only seem to be getting worse.

It only used to come at night, but is bothering him in the day now and spreads beyond his legs sometimes to his shoulders. He is pretty inactive, and has to sit for long periods of time while on dialysis which is becoming very difficult for him. He often has to cut his treatments short because of his legs.

Medical Reply

Your husband is getting augmentation from the Sinemet (levodopa). This occurs generally after a period of using the drug (usually a month or longer) and causes the RLS symptoms to occur earlier in the day, spread to other body parts and worsen in general.

Tapering off the Sinemet while substituting a dopamine agonist such as Requip (metabolized in the liver, so it is not affected by kidney failure) should then help the RLS problem.

Sent: Sunday, November 20, 2005 3:10 PM
Subject: Mirapex and Requip used together?

Can Mirapex and Requip be used intermittently together?

Randall B.

Medical Reply

Although there is no reason that they cannot be used together, most physicians do not prescribe them to be used at the same time as they act on the same receptors (the dopamine D2 and D3 receptors). There may be exceptions such as if one causes sleepiness (better used at bedtime) and one causes insomnia (better used during the daytime.

They usually have similar side effects and positive effects so that most do not benefit by taking them together, however, in those few that react differently to them, using them together may be helpful.

Sent: Monday, November 21, 2005 9:39 AM
Subject: RLS and Ambien or Lunesta?

i have been taking Ambien about 5 nights a week for over a year now.  It helps my restless legs which start around 10:00 pm as I'm watching TV.  You state Ambien is safe long term. Do you think Lunesta is any better?

Joan R.

Medical Reply

Lunesta and Ambien are equally safe for the long term (although only Lunesta has a six months long study but Ambien has been available much longer so has more data). Some people do well with both but many prefer one to the other. Only trial and error can tell you for sure.

Sent: Monday, November 21, 2005 7:02 PM
Subject: RLS testimonial

It is wonderful to find this web link.

I am a 54 y/o Raleigh NC Family Doctor with 6 years of worsening RLS. I am getting worse by the week and am looking for a movement disorder clinic/doc to switch to soon. I had been stable on Requip with adjunct Ultram for about a year now but nothing seems to help now. Last night I doubled my Requip - from 4 mg daily to 9 mg, and three instead of 1 Ultram, to no avail. I then took 10 mg of diazepam - on a lark - and 800 of Motrin and never felt any relief.

I kept exercising in the bath room - leg lifts , push ups, knee bends, presses up against the door frame, until I fell asleep exhausted. It started again today at 4pm. It starts with a feeling of desperate inquietude all over my body and I can deal with this and continue working for about two hrs. Then invariably it progresses to the unavoidable need to move about - with strong and lengthy muscular contractions against an immovable body - after which I am okay for another 10 minutes or so.- as I then load up on Requip.

Of course I am convinced by now that I am certifiable nuts - probably not unlike others with the same disorder. I just wish I knew the cause. I feel like I will have to retire soon if I don't get some consistent relief. I am up to my nose in debt like all docs I know and of course retirement is not an option for another twenty years. It seems periodic suffering with occasional relief is the best we can hope for.

I started off in '98 with a script for clonazepam from a Psychiatrist I started seeing as my daytime fatigue and over all mental health resulted in seeking mental health help. I never had an inch of RLS till shoulder surgery that same year. It started within two weeks of the surgery.

At first, I simply had to shake my legs before sleeping or I would go crazy. No tingling, cramping of involuntary jerking. I thought I had an anxiety disorder till the shrink told me it was RLS. What a relief that was. Having a name for the way I felt and another doctor to tell me he had heard of my problem before. I sure had never heard of it.

Seven years later there has been no appreciable improvement and not one day symptom free. On the upside, I am an avid athlete and have tuned up my physical aptitude to where I can do about anything physically and for long periods. The neurological situation has not improved with my conditioning.

That is about all of my story and I appreciate the opportunity to share this with other sufferers of the same disorder - something I have never had the chance to do before. I have told my friends and love ones the best way to describe my problem is to say that when things are at their worst, I could not stay still for thirty seconds even given the offer of a million dollars for staying still.

Medical Reply

You may have already noticed this, but high levels of exercise usually worsen RLS. It may be prudent to decrease your exercise levels if they do bother your RLS symptoms.

It is quite likely that you are developing augmentation from Requip and increasing the dose may only worsen the situation. It may be better to change to a pain killer such as methadone, taken on a regular basis. Despite the stigma of being a narcotic, this drug works really well for RLS. Tapering down (or probably even better, just off) of Requip may be a good idea.

Neurontin is another choice to consider. It can be added to your current or future drugs. Most RLS sufferers should be able to get excellent relief with current medications.

Sent: Wednesday, November 23, 2005 12:19 PM
Subject: RLS and leg pain?

My RLS began in my 20's and I am now 60 and it is getting progressively worse.  I have RLS continually.  I notice now that my legs also have pain from my knees to my ankles.  I was on Requip but it made my stomach too upset, I really couldn't tolerate it. 

My doctor now wants to put me on Clonazepam but I am afraid it may make me even more foggy (unable to concentrate) than I am now.  I cannot fly in a plane as both my legs and arms are affected.  I was diagnosed with fibromyalgia a few years ago. 

Would that account for the pain in the legs?  I am getting desperate.  Does stress increase RLS? 

Sandra J.

Medical Reply

Clonazepam generally does not improve RLS symptoms but rather just puts people to sleep (and if you are asleep, then you can not feel your RLS).  Clonazepam has a half-life of 30-40 hours so that it is very likely that it will make you foggy the next day.
 
Even though Requip caused nausea, it may be worthwhile to try Mirapex.  Have your doctor prescribe it at the lowest dose (.125 mg) and increase the dose very slowly (very 3-5 days) only if needed.  If you take Mirapex (or Requip) with food, the nausea is usually improved.
 
The pain in your legs may be due to a peripheral neuropathy that is sometimes associated with RLS, fibromyalgia or some other cause.  It is very difficult to assess this issue over the internet.  If Requip or Mirapex helps this pain then it is likely due to RLS.  Other choices to treat this pain include Neurontin or painkillers (narcotics or Ultram).
 
Stress can easily increase RLS (as it does other problems with discomfort such as back pain).

Sent: Tuesday, November 22, 2005 4:44 PM
Subject: Leg jumping and arms twitching?

I always know about 30 seconds before my legs are going to jump...it is usually after I sit down. Then my arms may or may not jerk or twitch. Sometimes I feel like my entire body is jumping or jerking. Is this normal? I may be ok for several days or weeks, then it returns.

I take clonazepam before bed for the leg jerks. I also take Zoloft, synthroid, and Prevacid. I am normal weight and active with good eating habits. I have some jerking in the bed too.

Should I change anything? Are my symptoms typical for RLS? Could this be another kind of neurological problem? 

Gilda D.
Age 58

Medical Reply

Your symptoms are not that of RLS but rather PLM (periodic limb movements). These jerks can cause problems while awake and even more so while asleep.

SSRI medications such as Zoloft may cause or worsen this problem. Wellbutrin may be a better choice.

Sent: Friday, November 25, 2005 12:06 AM
Subject: Sinemet is not working - augmentation is drastic.

I am 60 years old and have dealt with RLS since my twenties. I was diagnosed with MS approx 13 years ago. I know RLS and MS do not necessarily go hand in hand but the MS has probably aggravated the RLS. I am hoping someone can offer some suggestions to help me get some sleep!

Some time ago a doctor prescribed Restoril to help me sleep. At first I only used a few a month. I now use Restoril (30 mg dosage) every night as well as 1 Sinemet CR 4 hours prior to bedtime and 1 Sinemet CR immediately before bed.

Since starting on the Sinemet several years ago I have had to increase the frequency of use and often have to take it during the day. Talk about augmentation - I am awake after 5 hrs of sleep (and 5 hours is on a good night) - and my legs are going wild. If I have to spend any time traveling in a vehicle, on a plane, or even to sit through a lunch at a restaurant I have to take Sinemet. To get a pedicure is an endurance test - Sinemet is a necessity at least 1 hour prior to any event where I might be unable to jump up and move around. In order to keep the Sinemet to a minimum, my daily schedule doesn't include much "sit down" time.

I do not use antihistamines, anti-nausea drugs, and no alcohol because the RLS is then out of control. I do smoke maybe 5 cigarettes a day and limit myself to 1 1/2 cups of coffee a day and maybe 2 cola drinks a month - and that is a big change from 1/2 pack or more a day and 3 - 4 cups of coffee a day, plus diet coke. I know the caffeine and smoking are factors but my RLS continued to worsen even after I cut back. I don't smoke 2 hours before bed and no caffeine after 2:00 p.m. Bedtime is midnight and 5 or 6 hours of sleep still means I am up earlier than most people. I would really love to have one night with a full 8 hour rest. The RLS wakes me almost daily and taking 1/2 a tablet at that time is not effective.

If there are different medications I could use instead of using a minimum of 2 or 3 Sinemet every day plus the Restoril I would really like to hear about them. Thank you for taking the time to review my problems with RLS.

Medical Reply

Since you already know that you have augmentation with Sinemet (which is expected at the dose of Sinemet that you are using), then you should try to get off the drug and replace it with Requip or Mirapex. A strong narcotic (such as hydrocodone 10 mg, oxycodone or even methadone) would be very helpful in the transition period of increased RLS symptoms caused by withdrawing the Sinemet (a week or two).

The non-benzodiazepine drugs (Ambien, Lunesta or even Sonata) are much safer for daily, long term use as sleeping pills than the Valium related benzodiazepine drugs (Restoril, Halcion, etc.). Once your RLS is under control, you may find that you need less sleeping pills.

Caffeine stays in your system for many hours so you may want to consider changing to decaffeinated beverages.

Sent: Sunday, November 27, 2005 4:44 PM
Subject: PLMS

Suffering with PLMS, my wife started Requip (.5mg) last March, raised to .25 between 2-4 p.m. and .5 more in the evening. This worked fairly well with only minor symptoms for about one week recently. Now, the problem has worsened. Severe jerking seems to begin 15-20 minutes after taking the afternoon dose and again after the evening dose, lasting until 1 a.m. before there is enough respite to get some sleep, then starting again about 5 or 6 a.m. and easing upon arising for the day.

Questions:

1) Is this augmentation (or rebound)? My reading seems to suggest that augmentation is not normally a result from Requip.

2) If it is augmentation (or rebound), would a drug holiday help? And, if so, for what period of time?

3) What relief might there be during a drug holiday -- such as switching to another drug? If so, would Mirapex be the most appropriate alternative? From your comments to other writers, I am fearful of Klonopin due to the long half-life. In your reply to another of my questions last August, you suggested Neurontin, as an option, but I wasn't clear as to whether you meant in addition to Requip (or another drug) or independently.

Your suggestions will be appreciated.

Ron J.
San Marcos, TX

Medical Reply

Augmentation is not well described with PLMD as it is with RLS but it does happen. Does your wife have PLMW (PLM during wake)? Otherwise, why does she take a dose of Requip at 2-4 pm?

If she is getting augmentation from Requip, then stopping for a month or so may re-establish its effectiveness. However, it should then be used at a lower dose to prevent augmentation from occurring again. Mirapex could be started as an alternative, but it is not clear if that would be better or worse (unfortunately, only trial and error may give us that answer). Mirapex should not be substituted for Requip until after the drug holiday as it works on the same dopamine receptors as Requip.

I would not recommend using Klonopin. However, you could substitute Neurontin for the Requip for the month or so. In fact, if Neurontin works well, she could stay on it (unless side effects, generally of sedation preclude that). Another option, would be to use Requip or Mirapex at lower doses (if higher doses are necessary to completely eliminate the PLM but then cause augmentation) and add a low dose of Neurontin to be used in combination.

Sent: Monday, November 28, 2005 1:47 PM
Subject: Migraine and restless legs in teenager?

Our son is 17 and has had migraine headaches for a few years which worsen with school stress. Recently while watching a TV commercial on RLS, he stated that he has had restless legs for most of his life. Should our child have a neurological evaluation?

 Jan H.

Medical Reply

He does not need a neurological evaluation but he may need treatment for his RLS (if his symptoms are significant and bothersome enough to warrant it). A neurologist, sleep specialist and possibly even his family doctor may be able to help him get relief if he needs medication.

Sent: Monday, November 28, 2005 4:17 PM
Subject: RLS and head and upper body shaking?

Recently I found your web site after being diagnosed with RLS. I don't have any of the normal symptoms. After seeing a number of specialists and being diagnosed with everything from Tardive tic syndrome to stress, I finally found a movement disorder specialist who said I had restless limb syndrome and put me on Mirapex and Wellbutrin. I have found relief for the first time in over a year.

My symptoms are severe restlessness and then my head shakes so fast that people think I'm having a seizure. I sometimes jerk all over also but it is always my upper body that is involved. I was on the drug Reglan for a long time and that is what started my symptoms.

I would like to know why my symptoms are so different. I can have an attack any time during the day or night.

Donna P.

Medical Reply

Your head (and upper body shaking) may be a reaction to the severe restlessness. They may also be related to limb movements (PLM) that often occur with RLS. Your description of these movements is somewhat different than most RLS patients but there is a lot of variation and most RLS sufferers are not "classic".

Reglan is a dopamine blocker than usually has an effect to markedly worsen RLS symptoms.

Sent: Monday, November 28, 2005 5:26 PM
Subject: RLS not better with Mirapex?

I have had RLS for about 7 or 8 years. I have been taking .25 mg of Mirapex one tablet twice during the daytime and then 2 tablets and one gabapentin capsule (300 mg) about 2 hours before bed but I am still bothered sometimes during the daytime and almost every evening.

I also have a problem going to movies, riding in a car for very long distances and on plane flights. Most nights I will get about 4 or 5 hours sleep. I also notice that at times a couple of fingers on my right hand feel numb.

Betty H.

Medical Reply

You may need more Mirapex. This may mean higher doses at the times that you are already taking the drug or an additional earlier dose if symptoms are occurring earlier in the day (Mirapex is usually taken 1-3 hours before the usual onset of RLS symptoms).

If increasing the Mirapex does not help or makes the problem worse with time (augmentation), then you may want to add either more Neurontin or other drugs (such as the painkillers, which can be very safe if taken properly). Most RLS patients can be symptoms free with the right medications.

There is no relationship between RLS, your drugs and the numbness of the fingers on your right hand. That should be investigated as a separate problem (such as carpal tunnel syndrome).

Sent: Tuesday, November 29, 2005 9:33 AM
Subject: Can't get proper medication through Kaiser

I've had RLS since I was in early teens. I'm now 54. 25 years ago I took Dalmane for a year or so for the insomnia and hated that benzodiazepine fuzzy feeling. Since I work at home in recent years I just decided to try to live with and around the symptoms. Now however it's worse and I need to be up in the mornings and can't afford to stay up half the night going crazy.

So I went to my Kaiser doctor who said she can't know I have RLS since it hasn't been diagnosed by a sleep study. She scheduled one for me for January. I asked for Ambien to help with the sleep since I am suffering from extreme sleep deprivation. She said she will not prescribe Ambien which is only for short term problems for a chronic problem like mine and also that she would not prescribe anything addictive. She gave me Pamelor and said it may or may not work but that it was not addictive. I then found your sight and learned Pamelor can worsen RLS. I tried it for three days and felt groggy the days after.

So I asked for another doctor (second opinion they called it at Kaiser) who took a much longer history asking many questions and she also refused to prescribe Ambien. I told her I was going to Europe in December and desperately needed something for the flight and in order to sleep with my husband. (Due to my condition we haven't slept together in years at home.) She also refused Ambien - same reason - short term drug for long-term problem. She then prescribed .5mg Klonopin indicating on label to take twice daily as needed for anxiety, panic attacks, restless leg syndrome. My sister (a psych nurse) told me I probably "presented" as anxious and I certainly did as I was getting weepy due to frustration, fear of my upcoming trip and lack of recent sleep.

I brought with me many of my notes from your comments but she poo poo'd anything I'd found on the internet. I'm taking the Klonopin and had no symptoms for 3 of 6 nights but often wake through the night. I do not wish to continue taking a benzo and fear the addiction and brain fog, etc. I have another appointment with this doctor for a complete physical on Monday. Any suggestions? As a backup I have made an appt. with a neurologist outside Kaiser who is recommended on the RLS foundation website. I'm not sure what I should ask for and am afraid he will also want to prescribe Klonopin.

I had hydrocodone for dental surgery which was very effective in eliminating RLS symptoms but found it difficult to sleep on it. But it worked well for short plane trips and sitting through movies, etc. You mention that medications should be taken prior to symptoms. Does one just assume symptoms will kick in during those day time events or wait until it does?

I have recently discovered that one can order prescriptions online with medical records faxed to the company and feel I may need to decide what would work best for me and would appreciate any guidance or advice. It is very frustrating that I can not get appropriate treatment through Kaiser since I am paying for it.

 T.L.

Medical Reply

It sounds as if you know much more about RLS than do your doctors (which unfortunately, is often the case with RLS). You should ask to be referred to a neurologist (or sleep specialist) at Kaiser as your doctors do not know how to treat RLS. If your PCP refuses to refer you then you can appeal to the system which must take care of your problem. Kaiser doctors typically do not prescribe Ambien (which most of the rest of use on a long term basis as it is much safer than the benzodiazepines, especially Klonopin) as it is not on their formulary. Otherwise it makes no sense to prescribe benzodiazepines over Ambien.

Having said that, it may be somewhat more expensive but more expedient to pay for an outside neurologist yourself. Even though he is on the RLS Foundation's list, make sure that he has lots of experience with RLS before seeing him (ask his nurse and receptionist).

The drug of choice for RLS now is a dopamine agonist. Requip is FDA approved for RLS (the only current drug that is approved at this time) and Mirapex is similar (but will be approved likely by next year). You should get your doctor to start you on one of these drugs which should be taken 1-3 hours before your symptoms typically begin. If you are going on a plane flight, take this medication beforehand and then you can add a narcotic (like hydrocodone or Vicodin) if RLS symptoms occur despite your premeditation with a dopamine agonist. With proper planning and rescue medication, you should have no trouble with movies, plane trips, etc.

With proper treatment you should have no problems with anxiety, depression, sleep deprivation and RLS. Don't give up until you get there.

A Reply from T.L.

Sent: Wednesday, November 30, 2005 5:43 AM
Subject: Re: Can't get proper medication through Kaiser

When I ask for Requip should I still ask for a prescription to Ambien? If the Requip works would that preclude the need for a sleeping aid? I notice so many people on your message boards are taking Ambien that I wonder if the insomnia continues even after Requip solves the restless legs? I am so fearful of being unable to sleep that I fear I may bring on my own insomnia even in the absence of RLS.

Thank you again. I am beginning to feel hopeful,
T.L

Medical Reply

It is common for the insomnia to continue after the RLS is resolved. After years of insomnia most people get conditioned to not sleeping and it may take a while to break that bad habit. Ambien (or Lunesta) are very safe sleeping pills that can be used for the long term and may help reverse the conditioning and ultimately help the conditioned insomnia.

Sent: Wednesday, November 30, 2005 12:41 PM
Subject: Neurontin for RLS?

I take 300 mg Neurontin and it's very good for me. I know that anticonvulsant are goods for RLS, but I have read that Neurontin stop to work when you take during a long time. Dopamine Agonist (Requip and Mirapex) aren't goods for me. My questions:

If I rest of Neurontin during some months, Can I take it again?

If I rest of Neurontin, I should to take other anticonvulsant? Normally will be them goods for me?

Jose M. (27 years old)

Medical Reply

Neurontin does not stop working so there is no need to stop it for a drug holiday.

A Reply from Jose M.

Sent: Thursday, December 01, 2005 12:50 AM
Subject: Neurontin causing early morning awakening?

My problem is that Neurontin causes early morning awakening. I normally sleep 8-9 hours but with Neurontin I'm sleeping 4-5 hours. I have taking Neurontin during seven days. I don't know if Neurontin is good for me. Should I increment dose or take less drug? The insomnia disappear with the time?

José M.

Medical Reply

Normally Neurontin causes increased sleepiness. It is possible that by increasing the dose, you may actually sleep better. If not, then consider changing to another anticonvulsant medication.

Sent: Friday, December 02, 2005 1:46 PM
Subject: Combining Requip with hydrocodone?

It is so great to find this site. Thank you for creating it. I have had severe RLS for about 10 years but just recently sought professional treatment for it. (I am a 51 year active woman in good health). My doctor prescribed Requip and I was so excited to finally be able to get a good night's sleep...however, that was not the case.

It is true that my legs seemed to quiet way down which should have afforded me better sleep, however, my brain seemed to go into high gear and I could literally feel my brain firing the signals to move my legs, even though my legs did not respond, my brain was so active all night that I still go not sleep and felt as if I had been playing football all night. I realized that the medication needed to be increased in dosage over two weeks, so I patiently waited until I was at full dose before I made a judgment as to the effect of Requip. Same verdict...calm legs but active brain.

Coincidentally, my son broke his arm and was prescribed hydrocodone. He took it for a few days but it made his stomach upset so he did not want to take anymore. In efforts to get some sleep, I took one of his pills along with the Requip. For the first time in years, I had a good night's sleep-the Requip quieted my body, and the hydrocodone (codeine) quieted my brain. It seems to be the perfect combination.

This is great, however, I am accessing the hydrocodone illegally since it was prescribed for my son and I am almost out of pills. What do you recommend that I do at this point? Should I just be honest with my doctor and tell him the whole story in hopes that he can prescribe me something similar?

Also, I don't want to get addicted to codeine-so perhaps I should ask for something else.

Medical Reply

It is likely that you are getting some insomnia from the Requip. You might do better with Mirapex (acts of the same dopamine receptors as Requip) but only trial and error will ascertain whether this is the case with you.

You might try the Vicodin (hydrocodone) alone (after getting a prescription from your doctor) as it may resolve your RLS problems without the need for Requip. At one pill per day, there is no way that you can become addicted or dependent on this drug. If you are concerned, you can try Ultram (a non-narcotic painkiller) instead.

Sent: Sunday, December 04, 2005 10:00 AM
Subject: Question about Hydrocodone, Tramadol, and Notriptyline

I'll try to give you as much information about my situation as is possible.

It's been roughly a year now since being diagnosed with RLS, and during this period I have tried many treatments. Historically the main treatment for me has been narcotics.. As many doubtless know already, long-term use of narcotics, even by a relatively responsible patient can lead to issues such as drug tolerance and dependency, and I am not afraid to admit that these are constant issues for me.. Although I have come to terms with the fact that narcotics provide me the best relief possible, over the longest duration possible. I have in the past tried drugs such as lorazepam, levodopa (Sinemet), buspirone (Buspar) (that one was my doctor's idea), and most recently Requip.. I definitely consider myself as having taken a pro-active interest in finding alternatives to my primary treatment of hydrocodone (Vicodin 10 / 325mg) because of my drug tolerance concerns, and have even gone on several self-initiated brief holidays, as well as one excruciating forced 2-week holiday on my doctor's part; of which I slept only about 12 - 14 hours total during the first 6 days.

Of all the alternatives I've tried, Requip appeared to be the most tolerable, in terms of side-effects and duration of action. Recently its becoming more of a bother to take the Requip however. On top of the initial 1 - 3 hours of waiting after you take your dose, I found that I would get somewhat random (but still coinciding with nights that I took Requip only) headaches that would usually be intense, and even progress to the point where it seemed to be mimicking dental pain (I hope that makes sense.. basically my mouth hurt too); and I also would experience mild nausea with or without food on occasion. Up until this point I felt like I was making better progress and better choices about when to rotate off of my Hydrocodone, but with these new side effects surfacing, the Requip has thus become very undesirable.

I am an unemployed and uninsured high school dropout (bless my doctor's heart, he's been helping me get my life back together), and finding affordable solutions to try is starting to become a problem as you can imagine. After doing a fair amount of research I made my case to him about possibly trying tramadol (Ultram) as a suitable alternative drug to use for Hydrocodone holidays. I know that the information on this web site states that no cross-tolerance has been reported, and I understand it has not been clinically verified but I was wondering if this is still a recommended regiment that I could try. If not I'm only out 9 bucks (which isn't bad compared to some of my other drug costs). I have to admit I am a bit of a fence sitter because even though there seems to be little reported chance of cross-tolerance, I have also seen random bits of info here and there, where people complained it "totally destroyed" their tolerance to (in one case) codeine. I realize not all narcotics are exactly alike, but that they are still similar in some ways. So I guess my main question here is whether you think I would have any issues taking Tramadol and then coming back to find out my Hydrocodone no longer works at a reasonable dose (or at all)?

Aside from everything I have discussed already I just have one other small concern, and this is about the seizure warnings for tramadol. I believe I read it was something like 1 in 100,000 ? Is that a "high" risk sort of number from a medical standards viewpoint? I know it would suck to have my bad luck also come into play in this situation! Building up on that concern is that my doctor also prescribed me Notriptyline. I believe I walked out of the office with the understanding we were both aware that TCA's (tricyclic antidepressants) could increase the risk of a seizure. But as far as being a normal person who has never experienced seizures before, should I be concerned in a serious manner, or would it just come down to "dumb luck"? I know the obvious answer here would be to not introduce an anti-depressant to the equation, but I have been trying various TCA's since first seeing my doctor after my 21st birthday. I do believe I suffer from serious bouts of depression, and medications have helped me "get over the hump" in the past.. (I haven't taken anti-depressants for some time now however, because in combination with the hydrocodone, all the ones I've tried have made it nigh impossible to urinate for unacceptable periods of time; except for Remeron which I stopped due to appetite and considerable weight gain). So part of me is hoping I will be able to take the Nortriptyline, while the rational half of me has serious concerns about harming myself inadvertently via the risk of seizures.

The instructions on my Rx indicate that he wants me to titrate the Nortriptyline up from 10mg initially to 30 mg (at bedtime) over time and hold the dosage there. Would it be reasonable to assume that if I stuck with the lowest amount possible of both the nortriptyline, and the tramadol that I could significantly lower any risks ?

Thank you for your time, and for any input you can provide,
Zach

Medical Reply

Although there are concerns about dependency and tolerance occurring to narcotics with long term use, this is very uncommon among RLS patients who use the drug as directed and are being closely monitored by their physicians (this excludes patients who have a history of drug abuse). The doses used by RLS sufferers usually do not cause these problems. There is no need to take a drug holiday if your stable dose has not yet caused any of these problems.

There is no literature (that I know of) that examines the cross tolerance of tramadol and the narcotics, but experience with RLS doses has not really demonstrated this to happen. Ultram has a very low tolerance/dependence potential which so far has only be seen with those who use it for painful problems (such as back pain). Although it does lower the seizure threshold, this is generally only a issue in those with a seizure disorder (epilepsy) or those taking multiple other drugs that also lower the seizure threshold (I have never seen this problem before).

Your problem with Requip may or may not be better with the use of Mirapex. It may be worth a try (if you can get samples as it is not cheap).

Nortriptyline is a TCA (tricyclic antidepressant drug) that is in a class of drugs that normally worsens RLS. However, the secondary amine TCA's (desipramine, nortriptyline, protriptyline) potentially should not bother RLS (although the most experience is with desipramine as the other two are not used very much any longer due to other side effects that you have already experienced).

Another consideration would be Neurontin (or other anti-seizure drugs) which also help RLS and do not have any tolerance or dependence issues. However, they are quite expensive and often cause daytime sedation at effective doses.

Sent: Sunday, December 04, 2005 2:11 PM
Subject: Wrapping or binding helps RLS?

I have had RLS for several months. It's been a new annoyance for me. I'm 65 and never experienced this until a few months ago. I wondered if it's from the Zoloft I've been taking. I don't like to treat problems with drugs unless all else has failed. A few nights ago, I tried wrapping a bandage around my calves. It worked. I don't wrap it tightly, just enough to feel the slight pressure. I've done that now each night and no more RLS. I have no idea why/what this means but just thought I'd pass it along.

Nancy F.

Medical Reply

Most antidepressants and especially the SSRI ones which include Zoloft tend to worsen RLS. It may be helpful to change Zoloft to a more RLS friendly antidepressant such as Wellbutrin.

Leg wrapping is used by many RLS patients to help relieve their symptoms so that they can sleep. However, some find that wearing surgical support stockings (for varicose veins) may worsen their symptoms (perhaps they are too tight?).

Sent: Sunday, December 04, 2005 11:50 PM
Subject: Mirapex and arthritis?

How very kind of you to help so many people. You are doing a great thing.

I am a healthy 43 year old female. After struggling with symptoms for three months and undergoing many medical tests, I was finally diagnosed with RLS/PLMD about one month ago. It was a very sudden onset of RLS, all over the body, arms and legs, with both daytime and nighttime symptoms). I had never had signs of it before.

Early in the picture (3 months ago), my neurologist had put me on Klonopin (.5 mg per day) to help me with the anxiety of “not knowing what was wrong with me” until we finally came up with the RLS diagnosis. On the Klonopin I was able to sleep, but during the day the RLS leg symptoms were still pretty bad. I also slowly noticed a stiffness in my hands in the morning and at night. (The neurologist said the stiff hands might be the Klonopin or anxiety) Two weeks ago he started me on Mirapex and asked that I remain on Klonopin, with the intention of tapering, until I was up to speed with the Mirapex. Now at the dosage of .5mg Mirapex- my RLS feels much much better but my hands are hurting more and more every day with arthritis-like symptoms. (I had never had any arthritis before the whole crisis started)

I noticed that arthritis is a “more common side affect “ of Mirapex on an rx website. Have you heard of this before? Should I plan to switch to Requip? If so, how long should one plan a taper from Mirapex?

Jeannie H.

Medical Reply

Klonopin is not a great drug for RLS and there are better ways to treat anxiety.

Mirapex rarely causes problems with arthritis (even with the much higher doses used for Parkinson's disease). There may be some other reason for your arthritis (perhaps something that triggered both problems?) but anything is possible even if not probable.

It is likely that Requip may not be the answer, but it is always worth a try (you never know what is really going on until you stop the offending medication).

Sent: Tuesday, December 06, 2005 8:57 AM
Subject: Switching from Requip to Ultram

I am a 61 year old female. I was recently put on Requip, working up gradually until I am now at 0.5 mg midday and 1 mg before bed. (Mirapex was no longer working after five years.) I am having no success with Requip. It seems my RLS is worse than ever, especially at night. My RLS doctor suggests Ultram. My question concerns switching to Ultram (50 mg). The doctor wasn't quite sure of the best way to switch from Requip to Ultram. I have had bad experiences with drugs in the past (Neurontin and Vicodin are poison for me.) so I am a bit gun-shy when it comes to new drugs.

I would appreciate a reply. The nights are getting worse and worse with almost no sleep now.

Pat L.

Medical Reply

It is not too surprising that Requip is not working well as it is only 1/4-1/2 as potent as Mirapex on a mg basis (so, you may possibly need a larger dose, depending on what dose of Mirapex worked for you). Although many patients benefit from another dopamine agonist when one fails, this is not always the case.

If you are having no success with Requip (even at higher doses) then there should not be much concern about discontinuing it as it is now not helping you anyway. You can either replace it with Ultram or if you are concerned about stopping Requip then just add the Ultram (it probably makes little difference unless you are actually getting some benefit from the Requip). Requip should be dosed at 1-2 tablets taken about 30-60 minutes before the onset of your RLS symptoms (generally taken at intervals of 6-8 hours or so).

If your problem with Vicodin does not extend to other narcotics, methadone is always a very good choice (instead of Ultram, if that does not help enough).

Sent: Wednesday, December 07, 2005 2:14 PM
Subject: Restless legs worsened by Lipitor?

I just thought I would add my experience to all those already in your data. I had suffered from Restless Legs for years and gone through the sleep program. Nothing seemed to help. One time I talked to the doctor about muscle aches and I stopped the Lipitor.

When I restarted it, I realized my legs were bothering me again, so I stopped it and it immediately was better that night. I no longer have the RLS problem but do have trouble falling asleep sometimes. Thank God for the no more RLS, though.

John B.

Medical Reply

Lipitor does cause muscle aching but is not known to worsen RLS. It is possible that the muscle pain from Lipitor may have triggered some RLS problems (which improved off the Lipitor) as I cannot explain your experience otherwise.

Sent: Friday, December 09, 2005 12:59 PM
Subject: Severe RLS and Vicodin (hydrocodone)?

I have had severe RLS for a about 20 years. I am now taking 1 mg of Requip nightly and 1 Temazepam 15 mg. I am also taking Hydrocodone at least twice a day and sometimes more if traveling. My doctor doesn't seem to think there is a problem taking that much Hydrocodone I don't want to end up in a Rehab center. Is there another drug that will work better?

Thank you for your informative website. It has really enlighten a lot of people to our problems with RLS.

TMW

Medical Reply

Taking 2 hydrocodone (I am assuming the 5 mg that is available in the most commonly prescribed 5/500 combination pill) tablets per day has almost no chance of leading to dependence or addiction to narcotic drugs (as long as you do not escalate your dose or have a history of drug abuse). Narcotics are usually the most potent drugs for RLS (especially severe RLS symptoms).

However, it may be possible to increase your Requip dose so that you need less (or even possibly no) painkillers. The addition of Neurontin may also help you decrease (or eliminate) the need for narcotics.

An alternative to hydrocodone is Ultram (tramadol) which is not a narcotic and works as well (for some even better) for many RLS sufferers as hydrocodone. Ultram is not a narcotic and has a very minimal problem with dependence.

Sent: Sunday, December 11, 2005 6:07 PM
Subject: Heart med worsens RLS?

My doctor recently put me on 25mg of atenolol for heart palpitations and my RLS has become markedly worse. I am on medication (Ultram, Mirapex, Topamax) already and raising my dosage is not something I want to do. Are you familiar with this medication causing an increase in rls symptoms. If so, are there alternative medications in the same class that may not aggravate my RLS?

Mary P.

Medical Reply

This is a difficult question as B-blockers like atenolol (metoprolol and propranolol are others) have been suggested as being beneficial for RLS (although no actual studies have been published as of yet). However, it is certainly possible that any drug (often even some of the effective RLS drugs such as the ones that you are on) can bother RLS in given individuals.

It is thus difficult to suggest a replacement as this may be a class effect (in which case the other 2 drugs may also bother you) or just due to atenolol itself. If I were the treating doctor, I would stop the atenolol and substitute metoprolol (Topral is the best brand of this drug as it has a very good 24 hour smooth release, however it is much more expensive than generic metoprolol) and see if that takes care of your heart and RLS problems.

Sent: Monday, December 12, 2005 6:22 PM
Subject: Requip and residual RLS?

I have RLS and using Requip .25, two hours before bedtime for the past 2 years. Lately I have been waking up at 3:00 am trashing and trying to get comfortable to continue to sleep. My doctor has stated I could take up to 2 Requip (.50mg) at bedtime. Should I take 2 at bedtime or continue to take 1 and when I wake up take the other?  If this doesn't help what would be your suggestion?

Linda P.

Medical Reply

If your RLS is bothering you at 3:00 am, then your Requip dose two hours before bedtime is not lasting long enough (this is called rebound). Adding a dose just as you go to sleep is a good idea. However, you might try adding just one .25 mg tablet at bedtime and only increase to 2 tablets if the one extra bedtime pill does not work. It is always better to take RLS medication to prevent symptoms rather than waiting until symptoms occur (which then makes it tougher to treat).

Sent: Monday, December 12, 2005 6:51 PM
Subject: Requip and lack of sleep?

I am a 65 year old female who has had RLS since about 14 years of age. It became severe after a spinal fusion about 5 years ago. I currently take Requip 4 times a day (.5 mg in am; .75 mg at 1:00 p.m.; .75 mg. at dinner; and 1 mg. at bedtime. The Requip controls my RLS symptoms well during the day.

My problem is that I wake up about 3:00 A.M. or 4:00 A.M. and can't get back to sleep. I usually go to bed about 10:30 p.m. Would you recommend taking a sleeping aid such as Ambien or Lunestra?  If so, what dosage and when would I take it? How long would I need to take it?

Joan M.

Medical Reply

If your problem is sustaining sleep (not related to middle of the night RLS symptoms) then Ambien or Lunesta would be good choices. Both drugs are fairly good and you may have to try them to see which one you like better. Either should be started at the lowest dose then increased to the maximum dose necessary to keep you asleep until your desired wake time (but not leave you drowsy in the morning). Ambien comes in a new form, CR (controlled release) which provides longer sleep but not increased morning sleepiness.

Sent: Monday, December 12, 2005 10:07 PM
Subject: Requip and mood liability?

Your website is fascinating! I am the daughter and grand-daughter of RLS sufferers, the mother of one. I began taking Requip when we read of its effectiveness for treating PLMD and RLS. I now sleep calmly, wake more rested, and my husband is thrilled that I no longer jerk throughout the night and disturb his sleep.

My question: the family members listed all have some degree of mood disability along with their twitchiness. Since starting on the Requip, my husband and I have noticed my moods are much more extreme and change often (depressed for a day, agitated/very active for a day, etc.) like those of a classic cyclothymic. Have there been any studies on Requip with people on the bipolar spectrum and its having a negative effect on mood?

Jessica M.

Medical Reply

Unfortunately not too much work has been done on RLS and mood disorders. Most of the studies have tried to focus on depression and RLS with results that indicate that depression is more common among RLS sufferers (although results vary). There are no studies examining the relationship of Bipolar or cyclothymic disorders and RLS (that I know of). Mood changes can occur with any medication but they are not more common with Requip. Your mood changes may be unique to you and do not seem to be a generalized problem.

Sent: Tuesday, December 13, 2005 8:21 PM
Subject: PLMD Medication Advice

I had a sleep study performed recently and found out that I have PLMD. I have a long history of chronic depression and battled anorexia for 10 years. My weight has been stable for 8 years (5’4” 130 lbs).

My sleep specialist first switched me from Prozac for depression to Lexapro. He also changed by Zyrtec D to Flonase. After testing my ferritin levels (which was 3), he also put me on Iron supplements. After 3 months on this regime, my doctor added Mirapex at 0.125 mg and had me increase it once per week. When I reached a dose of 0.375 mg I started to have trouble with severe muscle weakness all the time, so my doctor reduced it to 0.25 mg. None of this treatment had improved me sleep.

About three weeks ago my doctor added Remeron 15mg to help me sleep. It helped me sleep well, however in two weeks I gained 5 pounds. Given my background I cannot handle such a weight gain, and I am concerned that the weight gain will continue. When I stated my concern about the weight gain to my doctor, he suggested switching to Trazodone. However, I understand that this medication causes weight gain as well.

I have asked my doctor to let me try Ambien CR, but he says that it is not the best answer to my sleep problems. He does not seem to be very sympathetic to my concerns about weight gain, and wants me to “try” all of these meds that are known to cause weight gain.

What medications can I take to help me sleep that will not cause weight gain?  Why is my doctor so reluctant to prescribe Ambien-CR even for a trial period?

Lynn

Medical Reply

Treatment of PLMD is still somewhat controversial (some experts think that this does not need to be treated at all). It would be helpful to have the results of your sleep study to be able to comment more specifically on your case.

PLMS may increase with SSRI medications such as Lexapro and Prozac. It is possible that discontinuing the SSRI medication (and possibly substituting Wellbutrin and/or trazodone) may be quite helpful and obviate the need for Mirapex at all (Wellbutrin is associated with weight loss more often than weight gain).

Remeron is not an SSRI but also has been known to worsen RLS and PLMS.

If you indeed do have a lot of arousals from PLMS, then Ambien CR is not a bad choice as it decreases the arousals and awakenings from PLMS (it does not alter the amount of PLMS). It is a fairly safe drug that generally is not associated with dependence.

A Reply from Lynn

Sent: Wednesday, December 14, 2005 8:24 PM
Subject: RE: PLMD Medication Advice

My sleep study stated that I averaged 27 limb movements per hour, that were “intermittently associated with EEG arousals.” “REM latency was 193 minutes.”

“Sleep stage architecture was abnormal due to severe sleep fragmentation, delayed and diminished REM sleep, and absent slow wave sleep.”

I am really tired of taking various antidepressant and Parkinson’s drug cocktails, and feel that trying a sleep aid may be my quickest and best fix. Any suggestions on how to persuade my doctor to prescribe Ambien CR?

Lynn

Medical Reply

The sleep study should state the exact amount of PLMS with arousals as PLMS without arousals have little or no clinical significance.

Some doctors (usually not sleep specialists though) are reluctant to prescribe the non-benzodiazepine sleeping pills (Sonata, Ambien and Lunesta) despite the non-addictive/dependent nature of these drugs. Most sleep specialists know the properties of these drugs well enough to feel comfortable prescribing them.

As it sounds as if you have very mild PLMD (if at all) and your main problem may just be getting adequate consolidated sleep, a sleeping pill may in fact be the correct treatment. Doctors generally want to treat the underlying disorder (in your case, questionable PLMD) rather than your symptoms. If he won't prescribe the medication that you need, you may want to switch to another doctor.

Sent: Thursday, December 15, 2005 1:02 PM
Subject: Husband does not believe in RLS

I am 53 years old and have had RLS for at least 15 or 20 years, my husband thinks it is all in my head but I am sure it is all in my legs and sometimes in my arm. The doctor has put me on Requip at night and it has helped some.

I have noticed that when I take in caffeine or chocolate it makes things worse I go to bed very sleepy and wake up around 11 and cannot go back to sleep until around 3 because the paid is so bad. I have to drive, I can not ride in a car and I cannot sit still in a plane. I feel so tired some days that I can't hardly function.

Yuvonne from Oklahoma

Medical Reply

Your RLS is indeed very real and you should show your husband the wealth of evidence that backs this up.

You may need a higher dose of Requip (speak to your doctor about that) which may relieve all of your symptoms. If that does not help, there are many additional treatments that should resolve all of your RLS problems and let you fly in a plane or ride in a car without any difficulty.

Sent: Thursday, December 15, 2005 7:03 PM
Subject: RLS worse with blood pressure pill Vasotec?

On your website I saw a message from someone dated Thursday, January 11 about Vasotec seeming to make the RLS worse.

This is the first time I have looked this up because I have only been wondering about it a few weeks. I take Enalapril at 8 pm each evening and not too much later begin to get a crawly feeling in my left hip and thigh. I have begun to think the medication is causing it. Some nights it is so bad I have a hard time sleeping, especially if I forget and take the Enalapril around 9 pm. It seems to be getting worse and I do not know if this is RLS or not.

What do you think?

Helen S.

Medical Reply

Other than these individual reports, there are no other linking any ACE inhibitor blood pressure pill such as enalapril (Vasotec) and RLS. It is certainly possible that for some RLS patients enalapril will worsen RLS but most RLS patients who are this drug (which is quite a few as enalapril and ACE inhibitors are very common high blood pressure drugs) do not have any problems with these drugs.

Sent: Thursday, December 15, 2005 9:58 PM
Subject: Frustrated and tired?

Last year I was tested for and diagnosed with sleep apnea. I have been using a CPAP, which helps the breathing problem. I was hoping that once I got that under control I would be able to sleep through the night. However, that has not been the case. Part of the problem is that I have a very hard time falling asleep and staying asleep. The Dr. had me on Ambien for a while. It would knock me out, but I'd wake about 5 hrs after I took it and then drift in & out of sleep the rest of the night, which left me exhausted.

My last visit with the sleep dr. was with a new dr. and after reviewing my chart she saw that it showed period limb movements. Funny thing is that my first dr. never mentioned it! Anyway, this new dr. thinks this why I keep waking up all night. As a result, she took me off the Ambien and has me on clonazepam (1 tablet .5mg at bedtime), which does not seem to do much. I've upped it to 1 1/2 tablets, but I still wake up after 4 or 5 hrs sleep. I have an apt. to meet with the dr. in a few weeks. But I am totally exhausted and at my wits end with all of this.

I don't like taking meds in the first place, and am frustrated that nothing seems to help me. It seem from everything I have read, you have to just keep increasing the dosage. The only problem is...will that make me feel even sleepier during the day?

I am 49 year old women (who also happens to be going through menopause (which makes me wonder if that has anything to do with the whole insomnia thing??) with a 7 yrs old son ...and NO energy for him!! Any suggestions/ideas as to what might help me?? I'm so tired of being tired & cranky all the time!!

Thanks!
Pam J.

Medical Reply

Unless the sleep study showed many PLM (periodic limb movements) that caused awakenings or arousals, it need not be treated as it is not causing any problems. Klonopin does decrease awakenings from PLM (as does Ambien) but Klonopin has a 30-40 hours half-life which often causes drowsiness during the following day.

There may be other reasons for your insomnia and daytime fatigue that should be investigated.

Sent: Saturday, December 17, 2005 4:14 AM
Subject: Not sleeping due to RLS?

I have had restless legs for a very long time. I am taking Requip and it works great. I take one before bed and my legs do not bother me at all. But I still have trouble sleeping , sometimes it takes me 4 hours to fall asleep, so my Doctor gave some Elavil, and Lunesta.

My husband takes Klonopin, so I did try it one night, and I fell asleep fast and stayed asleep longer. I do not want to take the Klonopin if it has a bad reaction to my other meds. What ever advice will be very helpful.

Thank you!
M. Cathy G.

Medical Reply

Elavil may worsen RLS so it should be avoided by most RLS sufferers. Lunesta is a good choice (make sure that you tried the 3 mg tablet). Klonopin has a very long half-life (30-40 hours) which often results in daytime sleepiness/drowsiness after several days. Additionally, Klonopin is potentially addictive (which is not the case with Lunesta or Ambien CR).

Sent: Saturday, December 17, 2005 2:49 PM
Subject: Something similar to RLS?

I have a problem similar to RLS. The more stress I am under the worse it is.  Normally a couple of Ultram pills prevent it but I have been under a lot of stress lately and it took two hydrocodone tablets to do the job. It works like this. It does not occur during waking hours except in a few rare cases. RLS sufferers say they get a "creepy" feeling in their legs. I get the feeling in my rectum. The best way to describe it is the pain you will get in the area of your diaphragm when you hold your breath to the very limit. It causes me to continuously kick my legs and roll around on the bed until I give up and get up. As with RLS sufferers, anything that relaxes me makes it worse. The worst episode was when I took a muscle relaxant. I didn't close my eyes for three days.

I have never awakened with this syndrome. I do not kick and roll once I am asleep. It occurs only when I am trying to sleep or on rare occasions while watching TV. No doctor I have ever visited has ever heard of this syndrome. I can remember it happen occasionally when I was a child. Now that I am older than dirt it has become a constant problem.

Has anyone else ever heard of this syndrome?

I have been advised that there is a procedure that will help but it requires a rabbi and a live chicken.

Anne

Medical Reply

It does sound as if you have RLS albeit a very strange variant. RLS does get better with Ultram or hydrocodone. A good test would be to have your doctor prescribe a dopamine agonist (Requip or Mirapex about 2-3 hours before bedtime) and if the symptoms are then resolved then you almost definitely have RLS.

I hope that you are not serious about the rabbi and live chicken treatment??

Sent: Thursday, December 22, 2005 8:55 PM
Subject: Mirapex woes

I've written to you in the past and have found your site very helpful.  Here again is a short version of my 'RLS history':

I was diagnosed at the age of 41 in 1996 and since then have been prescribed quinine, amitriptyline, Sinemet, Permax, Ultram, clonazepam, Neurontin, Requip and Mirapex. (as well as trying OTC remedies such as CoQ10, vitamin E, C, Omega 3, magnesium, potassium, iron and Tylenol). Nothing worked very well, some not at all.

I was prescribed Mirapex in 1998 and started at the usual .0125 mg. It was a miracle drug for me. Unfortunately 7 years later, I have increased the dose to 1.5 mg per day and have found my symptoms increasingly worse. I have severe 24/7 RLS and feel I fall into the small percentage that experiences augmentation from Mirapex. I've tried on numerous occasions to take a drug holiday from Mirapex only to find that none of the drugs I've used in the past will work anymore. In fact, my symptoms become so severe that the electrical currents I feel in my legs NEVER stops.

Even when I resume the Mirapex, it will still take hours to alleviate the symptoms. I'm having so many 'break-through' symptoms that I feel I must do something different. I've been told I should quit Mirapex cold turkey for at least 2 weeks, but due to the severity of my symptoms, the only way that would be possible would be to literally 'knock me out' for the duration. It would NOT be possible to go off completely. I feel I've developed a dependency on the drug and don't want to increase the dose, but this is effecting my life more and more each week and I'm feeling helpless to stop it.

Please don't tell me to stop the Mirapex, unless there's something else out there that would work equally well. The suffering isn't just physical. As most other RLS victims would probably agree, it messes with your mind. You not only lose your ability to sit or relax, but totally lose your ability to concentrate, carry on a conversation, or even function.

This is worse than any pain I've ever endured. It causes me depression and despair and the terrible fear that it will eventually take over my whole life and I will end up in a mental institution. I've experienced 'bad times' with RLS in the past, but this time, rather than a few days or couple of weeks, it's gone on for over a month and I don't think it'll just pass.

Sorry so lengthy, I'm looking for some fresh ideas,
Brenda B.

Medical Reply

There is a fairly simple answer to your problem. You are most likely suffering from augmentation (as you have already mentioned) and the only way to combat this is to get off of the dopamine agonist. However, there is a way to accomplish that goal.

High potency opioids (methadone is my drug of choice, but others such as Dilaudid, oxycodone, levorphanol are used by other experts) can usually relieve the severe RLS symptoms, even when stopping the Mirapex. If you want, you can try tapering off of the Mirapex over a few weeks but if you take enough of the narcotic, you should be able to cover your Mirapex withdrawal RLS symptoms (which usually go away within a week or two of stopping Mirapex). You should easily be able to get back to normal life without being bothered by your RLS symptoms with subsequent maintenance treatment with lower dose narcotics.

Sent: Tuesday, December 27, 2005 11:14 AM
Subject: Trembling from Mirapex?

I have been on Mirapex for approximately 4 years for RLS. In the past two months I have developed trembling in my right arm and more recently I can even feel the trembling in my trunk. I have seen a neurologist following a MRI with the thoughts of possibly Parkinson's, MS, or a stroke even having occurred. The MRI showed none of these things.

All the neurologist could tell me was that it wasn't any of these things and to come back in three months. After doing an internet study for side effects for Mirapex (which is the only prescribed drug I am on although I do take Vitamin E and calcium supplements) I did find that muscle spasms are a side effect as well as feelings of anxiety, which I also feel.

Any thoughts on this?
Judi W.

Medical Reply

It is very unusual to get muscle spasm problems from Mirapex (although anything is possible). The only way to know for sure would be to stop the Mirapex (and perhaps to substitute a painkiller to control your RLS while doing so) to see if this resolved the trembling problem. If the trembling feeling is similar to your RLS feeling, then your problem may be augmentation.

Sent: Tuesday, December 27, 2005 8:18 PM
Subject: RLS, surgery, and depression

I have just spent the last several hours reading the RLS patient letters pages as well as information on the Requip website. Your website has been extremely educational.

I have had RLS for several years. Finally, this past August my doctor put me on Requip. I was taking 1 mg each evening. This worked fine for a while. During this time I was having a lot of problems with my knee and ended up having knee replacement surgery in October. For about two months I did not need to take Requip since the hydrocodone and oxycodone I was taking for pain took care of the RLS. I understand now that I should not have just stopped the Requip but should have tapered off. I started taking Requip a few weeks ago (forgetting that I should have worked up to the 1 mg.)

In the last four weeks I have been tapering off the pain meds to where I only take hydrocodone occasionally. The knee replacement recovery and physical therapy have been extremely difficult and painful. Now I am experiencing only some pain and am much stronger. However, the RLS has been terrible. I take 1 mg of Requip at night. It barely takes care of the restless legs, and it lasts only six hours.

I am currently taking Lipitor, Wellbutrin XL (300 mg) and Paxil CR (12.5mg). My depression symptoms are getting worse as well the worsening RLS to the point where I am barely functioning some days. I now understand that I should not be taking the Paxil since it is an SSRI. My doctor has told me that more Requip will not help, but I think she is wrong. I have been waking up in the night and have resorted to taking another Reuip, and after about an hour I am able to go back to sleep. My plan is to get off the Paxil and increase the Requip to twice a day (my symptoms start in the late afternoon or early evening and even during the day if I have to sit for more than an hour or so). I am thinking about asking for a sleep aid like Lunesta, also.

One more thing. After my surgery I had to have three units of blood. I started taking iron supplements (65 mg daily) and got my level close to the recommended level as of late October (two months ago).

Any advice you can give me would be greatly appreciated. Your website has been a godsend.

Joyce

Medical Reply

Trauma (like your surgery) often worsens RLS (it is not understood why this happens). You may now need more Requip. If after increasing your Requip, you eventually notice that your RLS symptoms occur earlier in the day (weeks or more generally months after increasing the dose), then you may be developing augmentation and may in fact need to get off this medication.

The Paxil CR may be worsening your RLS but only trial and error (stopping and then restarting it) can tell you whether it does indeed bother your RLS. Your other plan to use Lunesta (or Ambien) for sleep is also quite reasonable.

You may also want to consider using hydrocodone or Ultram on a more regular basis until your RLS is better controlled. Also, have your serum ferritin checked and if it is below 35-45, then have your doctor monitor your levels until they are above that level.

Sent: Sunday, January 01, 2006 11:13 AM
Subject: Help with PLMD, Please !

I just found your web page and have read it with intensity. I need some advice please. I was diagnosed with PLMD (with a sleep study) about 2 years ago. My wife noticed by my jerking, kicking, and slinging of my arms while asleep. I was taking 150mg of Effexor when she first noticed these symptoms. The doctor I saw about said I had mild APNEA (4 episodes and hour), but moderate PLMD. I discontinued the Effexor and the PLMD symptoms continue. I have tried Sinemet with no results. When I take an occasional Darvocet or Xanax it help only sometimes.

My IM doctor wants me to try Prozac due to chronic pain from degenerative disc disease, and I can only have flashbacks from the problems with PLMD that were exacerbated with Effexor.

The only meds I currently take are Nexium 40 mg and Clarinex.

My question: Should I take the Prozac and maybe something to counteract the PLMD ? or maybe could the depression and chronic pain stop if I could sleep at night. I can't fall asleep and IF I do I can't stay asleep.
I am desperate for a night's sleep. Do you think Mirapex could help. I have a prescription for .25 mg at bedtime, but haven't tried it yet as I am trying to understand the possible side effects from.

My note may sound confusing as I am horribly sleep deprived, and find it difficult to function at my job.

J.S.

Medical Reply

The SSRI drugs (Paxil, Prozac, etc.) and the newer SSNRI drugs (Effexor) all tend to worsen PLMD. Wellbutrin does not worsen PLMD (and may even improve it) and is a good choice if it helps the depression/anxiety problems.

Sent: Sunday, January 01, 2006 10:19 PM
Subject: RLS and pregnancy

Forgive me if have spelling and/or grammar errors as I have been sleep deprived. I am in my 10 th week of pregnancy and my lifetime of RLS has quadruplicated. I was on anti-depressant Wellbutrin xl for depression, no side effects. I was on Trileptal for mood swings having to do with more borderline than bi-polar. I have had a light sleep pattern my entire life, partially genetics and I would assume partial stress as my mother was not often in the home at night.

Now, I am pregnant, in recovery from alcohol and drugs, and would really like to find out if I can safely treat my RLS with Ambien. Nothing else strong could even be a possibility and the diet and exercise doesn’t really help much. I cant increase my iron any further (it is in the pre-natal vitamins). I have searched the net over and over and over and I have found one maternal health child forum discussion talking about the need for medications and the small risk involved using them, still others that say it is not for pregnancy, or others say it is not for late term pregnancy!!

I have got to sleep, NOW. I am turning into a tin man with no oil. I cant move think or process properly. This cant be good for me or the baby. I hope I can take a 10 or 15 mg ambient occasionally to regain my muuuuuch needed rest period. The ambient info says to ask the doctor, and the doctor just quotes the drug company’s party line. What to do? Is it category B or what??

Thanks…too pooped to fight.

Any other suggestions on how to back me up on this?
Wendy

Medical Reply

Ambien has been rated as category B (considered ok for pregnancy) but is being changed to category C (not due to any new information or problems but due to a new way of rating) which makes it more problematic for pregnancy use. You will have to weigh the pros and cons of taking this medication with your doctor.

Sent: Tuesday, January 03, 2006 11:02 PM
Subject: PLMD question

I have PLMD, (recently diagnosed fibro as well) and I have not successfully been able to feel more rested with Mirapex or Requip. I think I might have felt a little better on clonazepam, but it left me to tired in the morning.

In your opinion, I wonder if you think it is worth trying l-dopa or if I am better of asking my doctor about going to look at other benzos or narcotics for treatment?

It is kind of hard for me since I only know I have PLMD from a sleep study, and I don't feel the physical restlessness, but I do have severe day time fatigue.

My rheumatologist wants to put me on a TCA anti-depressant for pain and sleep. But I don't have trouble getting to sleep or staying asleep, it is just the quality of the sleep that I question.

Any comments / suggestions you can make are greatly appreciated...

Jamie D.,
Neenah, WI

Medical Reply

The treatment of PLMD is very controversial with experts disagreeing on whether it should even be treated. It is generally agreed that PLM that do not cause sleep arousals should not be treated (thus, without seeing the results of your sleep study, it is hard to comment about treating your PLMD). If you do have many sleep arousals with the PLMS, then treatment may be helpful.

TCA drugs generally make PLMS worse.

Sent: Wednesday, January 04, 2006 2:45 AM
Subject: legs and feet hurt at night

I have been diagnosed with restless legs syndrome, I also have a lot of pain in my lower legs and feet, burning, hurting. I wake up with it, I have been test and may have neuropathy, does this come along with RLS. Also, is quinine a good medicine for RLS?

Medical Reply

Many RLS patients (especially those who develop the disorder after age 45) have an associated peripheral neuropathy (in the legs). Neurontin is a good choice for this problem as it may help the RLS and the neuropathy discomfort/pain. Quinine does nothing for RLS or neuropathy but is a good drug to prevent leg cramps.

Sent: Wednesday, January 04, 2006 4:13 PM
Subject: RLS caused by Abilify....will Requip help ??

I am wondering if you know the following. I go to a clinic and the prescribing doc did not know the answer to this, but she thought maybe it would help.

I had to stop taking the medication Abilify (for bi-polar disorder) because it caused RLS. This medication worked great mood wise but the RLS was a nightmare.

So the doctor thought if I took Requip to help the RLS with the Abilify it might work. Do you know anything about the two drugs together?  Will it work or just make it worse???

Please help, as I am starting to take the Requip tomorrow and I would not be able to bare more intense RLS.

Tammy L.

Medical Reply

Most all of the neuroleptic drugs worsen RLS except for Abilify. It activates the dopamine receptors which usually improves RLS (Requip also works on the dopamine receptors which is thought to account for its benefits on RLS patients).

I cannot explain why this drug worsened your RLS as general experience is that the drug helps RLS or does not worsen it for most all of the other RLS patients who have tried it. Requip might help but only trial and error can confirm this in your case.

Sent: Thursday, January 05, 2006 1:20 AM
Subject: RLS and chemicals.

I have had RLS since a teen now 53. I have had the misfortune of having to diagnose and treat myself, since it is relatively new, at least to the medical community. It has been around for ages. One thing I will stress more than anything else, stop. It is a chemical imbalance in the body, usually with a family history, from the lifestyle and genetics of the parents. The more chemicals we put into our bodies, the worse it gets. It may mask itself with chemicals, however it is only temporary.

Let me do a favor to some of these people, please. Stay away from caffeine, chocolate, colas, alcohol, sleep aids, anti-depressants, any thing with a chemical substance. Avoid strenuous exercise, it only makes it worse, I know so many people who try to work it off, only to have worse symptoms in the following days. Sugar is one of the worst substances you can put into your body in more ways than one.

Small amounts of hydrocodone, in people who are not prone to addiction is sufficient to quell the RLS. I know it is a chemical, but we have to live our lives, or give up. Everyone is different, but the one thing I find is the more caffeine, colas, coffee we take in the worse the feelings.

I hope I can help one person from the ungodly effects of this invisible torture.  

Medical Reply

 Although small doses of hydrocodone work very well for RLS and are very safe (in patients who do not have a history of drug abuse), the dopamine agonists (Requip and Mirapex) are currently the drugs of choice for this disorder.

Sent: Monday, January 09, 2006 9:19 AM
Subject: Requip and Zoloft?

First of all .......great web site. I read through the other posts and didn't find any specific reference to taking Requip along with Zoloft.

I am in my late 40's and my GP prescribed Zoloft a couple of years ago. Own my own business and am definitely a type "A" personality and he thought I needed to "chill" a little. The Zoloft worked wonders and I really have felt great since starting to take it.

About a year ago my wife started telling me I was "twitching" at night. About every minute my legs would move in a "jerking" type motion. I made an appointment with my GP and he put me on Requip. It really seemed to help the first couple of months but now it is back.

Wondered what effect the combination of Zoloft and Requip might have or is it as simple as asking my GP if I need to take an increased dosage of Requip? I am currently taking 100mg of Zoloft and 1 mg of Requip.

Any comments would be appreciated.

John

Medical Reply

There is no problem with taking Zoloft and Requip. However, your twitches may be due to Zoloft (as with all the SSRI drugs) and stopping the drug may avoid the need for Requip. Wellbutrin, (a PLMD/RLS friendly drug) may work as well as Zoloft and is not an SSRI so it does not cause the leg jerks. If Wellbutrin does not work as well for your type "A" problems, then you may need to continue the Zoloft and increase your Requip.

Sent: Wednesday, January 11, 2006 1:33 AM
Subject: RLS sufferer - taking Ropinirole (Requip)

I have suffered from RLS since I was a child but it became severe during my late twenties and early thirties. I finally recognized it was a condition and have been treated by a neurologist for the past 18 months very successfully with 3mg of Ropinirole per day. My symptoms have almost disappeared and my life has been transformed.

I had spoken to my doctor regarding the possibility of getting pregnant and was given the medical advice that I have since find in so many places; that this medication is not recommended for those planning to get pregnant or who are pregnant or breastfeeding. My doctor has therefore been investigating other potential medications for me to try before I try to get pregnant.

However, the totally unexpected has happened and I find myself 5 weeks pregnant and I have been taking ropinirole unknowingly during this. I can find no experiences of this happening anywhere on the web and would very much appreciate any advice.

Rosalyn

Medical Reply

Requip (ropinirole) is a category C drug and should not be taken during pregnancy. Taking this drug during pregnancy does not mean that your developing fetus will have problems but does increase the risk of trouble (however small, but with enough people taking the drug, some may develop problems). You should stop the drug and consider the alternatives (the best being methadone).

Sent: Wednesday, January 11, 2006 2:47 PM
Subject: PLMD and Neurontin

I was diagnosed with PLMD a couple months ago. Recently, I tried to start taking Neurontin (300 mg) before bed. The first night I took it, I woke up with a bad migraine (I have a history of migraines) and the second night, a severe migraine. I have had migraines every day since (5 days now). Does Neurontin cause migraines and how long does it take to get two doses out of your system?  I had a couple other things going on at the same time and I'm not sure if I should give up on the Neurontin.

Candi

Medical Reply

Neurontin is actually used to treat migraines, so your experience is very difficult to explain. A better choice might be Requip or Mirapex which are very potent for relieving PLMD.

Sent: Friday, January 13, 2006 3:28 PM
Subject: Mirapex vs. Requip

I was just diagnosed with PLMS through a polysomnogram (sleep study) combined with a blood test to rule out iron deficiency, diabetes, or anemia. I do not have RLS. My doctor prescribed Mirapex, starting at .125mg before bed, and then increasing .125mg per week (up to .75 mg) until effective. Between my initial appointment and getting the results back from the polysomnogram, my doctor had prescribed .5mg clonazepam, which seemed to help some, but I'm happy to be trying something new since I hated the morning drowsiness.

This all seems to be in line with what you've suggested several times on your website, but my question is should I consider Requip instead? What are the pros/cons between the two? Also, it seems like these drugs are pretty new. Are there any concerns on long-term use (albeit in much lower doses that used for treatment of Parkinson's)?

Eric M.,
Chicago

Medical Reply

Requip and Mirapex have been around for over 7-8 years already (for Parkinson's disease) so they are reasonably well known. For most patients there are very few differences between the drugs but some do better with one or the other (often for reasons that are not readily apparent). These drugs are quite safe for the long term.

Klonopin (clonazepam) can cause daytime sedation and is a potentially addictive drug. It should be used with caution.

Sent: Friday, January 13, 2006 3:29 PM
Subject: RLS Treatment

I am an 82 year old man with a severe case of Restless Legs Syndrome. It started some 12 years ago. My father had it and my sister has it. I have tried every medicine (almost......benzodiazepines, gabapentin, Mirapex etc. Out of desperation I started taking Darvon 65 some 5 or 6 yrs ago until I got up to 6 a day. Then my doctor recently prescribed Requip and started me out on 2mg three times daily.

Of course I had to quit the Darvon, which has put me through hell in the past six weeks. I still sneak in a capsule or two a day when I can't stand it any longer. Now....every time I take a Requip, in about 20 minutes I start getting terribly nervous to the point of almost convulsive. It takes about 1 or 2 hours to wear off. Is my Requip dosage to high to begin with?

Please help me,
Les T.

Medical Reply

Requip should be started at .25 mg and increased until the lowest effective dose is found. You may want to speak to your doctor about lowering your dose and seeing if that helps.

There is no reason that you cannot take Darvon (or even more potent narcotic painkillers) with Requip. That may also help you lower the Requip dose.

Sent: Sunday, January 15, 2006 10:16 AM
Subject: RLS and hormones?

I remember just when my RLS began about seven years ago. I didn't see a connection then, but it began within months of my starting to take hormone replacement therapy. However, a brother and an uncle have RLS also, just less severely. Mine bothers me night and day, just with more cramping at night.

My question: what is the latest on a link between HRT and RLS?

Medical Reply

RLS symptoms have been linked with changed in female hormones. Many women will notice changes in RLS symptoms with their menstrual cycle. Menopause may improve or worsen RLS as does HRT (hormone replacement therapy).

Sent: Sunday, January 15, 2006 8:37 PM
Subject: Vicodin and Klonopin for RLS?

I have had RLS for over 10 years. In the past I have been taking Klonopin 1 mg at 9pm. Because of a back injury two years ago, I started taking Vicodin 5/500 until my back improved. In the process I found that coming off Vicodin caused my RLS to worsen. I then talked to my doctor about this and he recommended my taking 1/2 of a Vicodin pill and 0.5 mg Klonopin and begin to taper off the Klonopin so that I would end up taking only the Vicodin.

However, I found that I couldn’t get off the Klonopin and so a year later I’m still taking the same dosage. Also, a year ago at that time, he thought Requip would be good but my health insurance didn’t cover it so I would be paying full price. Since then I have a new insurance company and the co-pay for Requip is affordable.

What do you recommend that I take? Taking Klonopin and Vicodin at 9 pm doesn’t completely relieve my RLS and I feel very groggy by 10 pm. Is there a better solution for living with RLS?

Neil

Medical Reply

Klonopin is an addictive drug and that may be the reason that you can't get off of it. It may also be causing next day drowsiness. You may have to taper off the drug (cut the pill into halves or even smaller amounts to slowly get off the drug).

Requip is a much better choice and may let you avoid the need for Vicodin or Klonopin. You can always add Vicodin on those days when the Requip does not completely eliminate your symptoms.

Sent: Monday, January 16, 2006 7:49 AM
Subject: Mirapex and Sleepwalking

I have had RLS since I was about 18 or 19, and I was finally diagnosed with it back in 1996. Turns out my mother had it too. I was put on Clonazepam, which worked for about 5 years at a 1.5 mg dosage. It wasn't 100% effective, but for the most part it let me sleep. However, its effectiveness started to wear off in about the year 2001. I didn't want to up my dosage of Clonazepam, so I went to see a specialist in RLS. He put me on Mirapex, and it worked wonders. I'm currently on .25 mg of it once a night. The only side effect I seem to experience with it is an exacerbation of my tendency to sleepwalk/sleeptalk, and I now have extremely vivid dreams. I have done this periodically throughout my life, but now it's almost a weekly occurrence and is very frustrating to me. Luckily my significant other is a heavy sleeper, and he's always there to pull me back if I try to get out of bed.

Anyway, my doctor put me back on Clonazepam (half of a .5 mg pill once a night) about 1.5 years ago, and that has stopped working. I now take a full .5 mg pill, and that does work. However, I'm hoping there's something else I can take to help stop the sleepwalking, because I know the .5 mg will eventually stop working too. I'm thinking of asking for one of the anticonvulsant drugs, or perhaps even a low-dose opioid since I found out codeine works really well on me for sleep after a bout with bronchitis. Or perhaps Ultram might be better, as it's not as addictive as codeine or hydrocodone. However, I'm aware that I could develop a tolerance to those too. So here's what I'm wondering:

1) Which might be better with the sleepwalking issue, anticonvulsants or opioid?
2) Can I take anticonvulsants with Mirapex? If so, perhaps I should ask for one of the newer ones, like Gabitril, Keppra, or Topamax?

I just can't take the sleepwalking/vivid dreams anymore, as it's starting to affect how I feel during the day. I'll be seeing my doctor soon, so I just wanted another opinion about what might be an effective alternative to Clonazepam.

Thanks!
S. Alexander

Medical Reply

You are correct to be concerned about taking Klonopin (clonazepam) as many people do become tolerant and dependant on this drug.

Sleep walking/talking is not a known side effect of Mirapex but of course, anything is possible in a given individual case. Taking one or two Ultram or narcotic tablets per day has virtually no chance of causing dependence or tolerance (except in individuals with a history of drug abuse). There is no anticonvulsant that is better than another (although most of the research has been done on Neurontin) and only trial and error can determine the best one for you. Both the narcotics and anticonvulsants should not provoke sleep walking/talking (but then again, neither should the Mirapex have done that).

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