Patient letters on RLS symptoms and remedies- Page 19

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Date: Wednesday, April 28, 1999 4:42 PM
Subject: Restless leg syndrome

I have just been put on Klonopin for restless leg syndrome. I am concerned about the addictive behavior of this drug and want to know if their is some thing safer to take that would not also make me more fatigued in day time.

And I was wondering if you thought acupuncture helps rest less leg syndrome. I hope you have time to answer my questions and I would really appreciate it .

Thank you,
Jeanie S.

Medical Reply

Klonopin is an addictive drug and is often responsible for daytime sleepiness due to its long action. We recommend Xanax or Ambien, which are shorter acting. To avoid tolerance and addiction, a regular drug holiday or 2 days off the drug every two weeks is strongly advised. Klonopin needs a drug holiday of 5-7 days.

Acupuncture may help a minority of RLS sufferers, but most do not get relief from this therapy.

Date: Tuesday, April 27, 1999 6:20 AM
Subject: RLS--Doctor appointment today

I seem to be having symptoms which point to RLS. I am going to the doctor today for another reason but at this point these symptoms are really more of a concern. I'll try to give a brief history and then if possible, I'd like some advice on what to say or ask (if anything ) when I go.

I am 25 was diagnosed with endometriosis 3 years ago and have had 2 laparoscopies to diagnose and treat for endometriosis and adhesions. I continue to have adhesion and endo pain (mostly in the low back and pelvic area).  I only mention the area because I have been reading of RLS patients who have low back pain that runs into the legs...exactly what mine feels like.

I get the creepy crawlies and can't sit still because it feels like my legs are constantly going to sleep and trying to wake up. Sometimes, my knees ache with it. I have on occasion had the "stomps"...my leg will stomp or jerk uncontrollably in the early evening. This week I have had the sensations (not the jerks but on the verge) all day....not just at night. For 2 years, I have had the same kind of pain in my right arm and shoulder and never made a connection (there may not be one to be made). My massage therapist noticed lots of knots in my calves last week. I hate to jump to conclusions and try and answer all questions with one thing but it all seems so weird.

My dilemma is this: I just got off of the medication cycle. My body has never reacted well to prescription drugs. I rarely go to my GP (only seen him once) and don't know him that well. I would prefer not to get into the meds cycle unless its just to treat attacks when they occur (if this is indeed RLS).

Should I even mention it to him? Will a diagnosis even be beneficial if I don't intend to pursue medical treatment? How do I phrase it so he doesn't think I'm crazy? I'm afraid when I tell him the symptoms he's just going to say "its stress...get over it" I don't want to offend him by coming to him and already thinking I know the answer. Basically, is this worth pursuing?

I guess I just want some answers and want a doctor I can trust to listen to me. Any recommendations?

Thanks!
Rachel, in Arkansas

Medical Reply

Any medical problem should be discussed with your doctor, but I agree that most doctors know very little about RLS and may not take you seriously out of ignorance.

If your symptoms are not very severe and you feel that you can live with them easily, then you should not need prescription medication. If it does cause more trouble, then you should not hesitate to get help from a doctor who is willing an able to help you.

It should be easy to phrase your problems. Just outline your symptoms as you did in this letter and let the doctor know how similar they are to the descriptions of RLS as described on the official site of the Restless Legs Syndrome Foundation, Inc or our web site. If he doesn't respond appropriately, change doctors.

Date: Saturday, May 01, 1999 10:42 AM
Subject: Follow up on Aching legs

First, I want to thank you for your information and advice inre my "aching" legs (see previous letter, Page 18, 3/11/99). I got in touch with my doctor and told him about my e-mail with you. Without hesitation he increased my Mirapex (.125 mg) from 3/day to 6/day. AND IT WORKED. I have had only a few episodes of "very minor" aching legs and then Zero (0) Restless legs since taking the increase of Mirapex. And for over a month I have been feeling great. I guess that there is nothing much better than a good night's sleep.

And again, I really want to thank you for your personal information and also for the excellent information you published on drugs for restless legs.

Aloha and Mahalo from Hawaii,
Bill P.

Medical Reply

Glad to hear that you are doing well on current therapy.

Date: Saturday, May 01, 1999 7:39 AM
Subject: Re: Help

When I last wrote (see page 18, 2/8/99), I was beginning treatment with a "sleep specialist," who, as it turned out, knew little about RLS and didn't want to learn. I was on trazadone (terrible results!), my RLS got much worse. Requip, which seemed to do the same things to me as Sinemet and pergolide, caused a rebound effect. (Really, though, I wonder since I was on both at the same time, do we really know that the Requip didn't work? a minor question)

The doctor "doesn't believe" in prescribing opioids, period, even though I'd told him that I had been taking Vicodin for years (1 1/2 pills a night on average with no problem). His idea was to try me on every anti-depressant untill I was happy about not sleeping!

My problem: I have an appt. w/ a doctor recommended by a member of our support group but not till July 26th. My very sympathetic internist had been and has begun again prescribing the Vicodin, Ambien and .75 mg of clonazepam. 5 mg Ambien, 1 1/2 V (5/500 APAP) and .75 mg clonazepam. at bedtime. I'm awake in 2-3 hours, at which time I take another Ambien and maybe another Vicodin. I'd love to sleep 4-5 hours at a stretch. Any ideas?

I think the Vicodin isn't helping me sleep. It's like it contains caffeine or something. And it sometimes negates the effects of the Ambien. As for the Klonopin, I know I need it but can take no more than .75 mg, sometimes less because of hangover. I can't take Xanax or Ativan, or it appears much Vicodin, because I get very dry and painful eye sockets, sometimes tearing for a half a day or more. No amount of Refresh PM and Hypo-Tears can overcome this problem.

My internist knows about you and the help you have been giving me and others. So she would be receptive to a suggestion, if applicable.

Thank you very much,
Anne G.

Medical Reply

I would not recommend any increase in the Klonopin (clonazepam) as it already causes side effects which would only get worse with an increase in the dose. The Vicodin is also at a significantly high dose, so I would not add more narcotic medication. You might consider Ultram for drug holidays from Vicodin.

My advice is to try Requip again, while not taking trazadone. Mirapex may be another very good choice in the Parkinson's disease class of drugs.

Date: Monday, May 03, 1999 8:40 PM
Subject: RLS with Severe Leg Cramps

I'm new to all of this, and have just recently been diagnosed as having RLS. The doctor has prescribed Klonopin for me. I read the letters from some of the other sufferers, however, no one complained of severe leg cramps (especially in the calves of my legs) after I have been in bed for awhile.

Does anyone out there also suffer leg cramps with RLS too? If so, what do you treat the cramps with?

Thanks,
Gordon K.

Medical Reply

Klonopin is the sedative that is in most of the textbooks for treating RLS. We recommend Xanax or Ambien which work much better.

Leg cramps are not part of RLS, but are fairly common, so it should be unusual for an RLS patient to have leg cramps. Quinine sulfate, 325 mg, taken one hour before bed will usually eliminate the leg cramps. The quinine will not help RLS in most cases, however.

Date: Monday, May 03, 1999 5:13 PM

I have had surgery on a disk in my back and hip replacement surgery for avascular necrosis due to the Medrol dose packs given to help prevent the back surgery. It seems that following this is when the RLS began.

I had a sleep study done and was put on clonazepam 1 mg. It was increased to 2 mg following another sleep study (the first I only managed 30 minutes of sleep). The clonazepam has helped the RLS but I sleep very little at night. I feel like nodding off (I have even put my head on my desk) all day.

The biggest problem is the depression. I can't get anything done feel overwhelmed all the time. My house is a mess, my desk overflowing with work. I just want to go to bed. I am not sure how much of this is the depression and how much the lack of sleep.

I have been told by friends not to suddenly stop the clonazepam and after over a year on it I am probably addicted. What is the plan for stopping the clonazepam? What would help the RLS without the depression? Before the diagnosis I had only confided to my sister in law about the RLS it seemed so crazy. To have a diagnosis was a relief.

Deborah W.,
Atlanta, Georgia

Medical Reply

We do not use Klonopin (clonazepam) very often for RLS. It is a very long acting sedative that commonly causes daytime sleepiness. It can also add to depression.

Klonopin can be tapered by slowly decreasing the amount by 0.5 mg (or even 0.25 mg) very 3-7 days. Over several days to a few weeks you will be able to taper yourself off the Klonopin.

It might be a good idea to start another drug for RLS, such as Mirapex, which generally works very well for RLS. If you do need a sleeping pill in the future (although, once you get addicted to one, the chances are higher that you could get addicted to another), Ambien would be the best choice. It should only be used a few days a week to prevent tolerance/addiction.

Date: Tuesday, May 04, 1999 1:11 PM
Subject: RLS

My doctor tells me I might have RLS. My symptoms are very similar to those I've read on your page and others. This is something I've put up with for quite some time (I'm 36), and from what I have read I feel my case is pretty mild.

Lately, however, I have been feeling very tired in my legs during the day. My balance seems to be affected also. There is sometimes some pain in my calves, but it isn't very severe. I'm also extremely groggy, and feel like I need sleep. My doctor says that I might be feeling the side effects of RLS and that it may be progressing. Are these daytime problems with my legs a common side-effect of RLS?

Also, my doctor prescribed clonidine (.1 mg). Looking through the drugs commonly prescribed for RLS it appears that this one is fairly rarely used. Was this a poor choice of medication? My doctor didn't seem to know much about RLS other than some articles he'd read.

I told him I did not want narcotics - but it appears to me that most people start with the Parkinson's drugs. He said that the Parkinson's drugs (Permax, etc.) would be indicated if I had a more severe case. I think I'm OK with that.  What do you think?

Thanks,
Graham K.

Medical Reply

RLS, by itself does not cause daytime drowsiness, grogginess or balance problems. There is an associated condition, called PLMD (periodic leg movement disorder), which occurs in about 85% or more of RLS sufferers, that can cause daytime problems.

The PLMD or leg jerking at night can interrupt good quality sleep by causing frequent arousals (changing from deep sleep stages to light, non-restorative sleep stages) that can rob the person of adequate sleep. You will then be groggy and sleepy during the daytime.

RLS is a clinical diagnosis based on symptoms and does not need a sleep study for diagnosis. PLMD causing arousals does need a sleep study before treatment is started. The sedatives or Parkinson's disease medications (Mirapex is generally better than Permax) are best for PLMD.

Clonidine (Catapres) is a very minor RLS drug that helps only a small percentage of patients. We use it very infrequently when treating RLS.

Date: Friday, May 07, 1999 12:23 AM
Subject: Message from Leon K.

I hope that you will once again be able to give me some advice. A short background before I begin:

I am currently on Mirapex (0.375 mg at 8 am and 3 PM): Ultram (16.66 mg (1/3 of 50 mg tablet) taken at 8 am, 3 PM, and 11 PM); and Xanax (1 mg per day taken at bedtime). I have been on this program for most of the winter and am doing quite well.

I generally do not drink any hard alcohol and have at most one glass of wine. On Saturday evening we were out to dinner and I drank two glasses of wine over the period of about two hours. I felt very lightheaded towards the end of dinner and the situation worsened to the point that I almost passed out. We were close to the local hospital and the paramedics got me into the emergency room within about 15 minutes. My pulse rate and blood pressure had fallen significantly. I was given oxygen and an IV drip and within about 30 minutes started to feel better.

Briefly, a battery of tests was run with no indications of any heart problems (and no related pain). I was not admitted to the hospital and returned home after about 3 hours in the emergency room. The conclusion reached by the attending doctor, and subsequently by my own doctor here is that it may have been a reaction between the Mirapex and the alcohol. I was also somewhat tired on that evening, as I had not had a particularly good rest the previous night. I had a slight episode of lightheadedness last night, which lasted only a short time.

I wonder if you have any thoughts on my situation. My doctor mentioned that some people suffer from VASO-VAGAL SYNCOPE, but I am inclined to think that the Mirapex may be causing a lowering of my blood pressure, which is generally about 120/80 (and has recently been somewhat lower, although I had put this down to a good exercise program). I will certainly not consume any alcohol but do you think I should try to cut back slightly on the Mirapex?

Any other comments would be much appreciated.

Best regards,
Leon K.

Medical Reply

It is often difficult to piece together the actual causes of lightheaded/fainting problems. It is a very common reason for patients to go to their doctors (I see lots of this problem in patients on no medication).

The first thing that people do is blame their medication. In many cases, that may be correct, but usually it is in combination with several other factors. The Mirapex might predispose you to lightheaded problems, but likely the fatigue and wine had significant roles. Alcohol causes the blood vessels to dilate, an thus will lower blood pressure. If your non-alcoholic fluid intake was low, this would be another very significant factor.

My suggestion would be to cut down on your P.M. dose of Mirapex if you are to have alcohol with dinner. Also, make sure to drink plenty of fluids in order to keep well hydrated. I would not necessarily cut down on the Mirapex, unless you can do so without significant worsening of your RLS (it is always best to be on the lowest dose that keeps you well).

A Reply from Leon K.

Date: Saturday, May 08, 1999 7:09 AM
Subject: Re: Deprenyl for RLS

Thanks for your response and suggestions which should be very helpful. On another matter, have you by any chance heard of Deprenyl being used to treat RLS. I understand that it may be prescribed for Parkinson's?

Again my thanks,
Leon K.

Medical Reply

Deprenyl (selegiline or Eldepryl) is a drug that is used for Parkinson's disease, but has no real use in RLS.  This medication is different than the other Parkinson's medication listed above. It does not work directly through the dopamine system, but is a MAO (Monoamine Oxidase) inhibitor. The MAO type B enzyme (which is inhibited) is responsible for the breakdown of dopamine in the brain.

In Parkinson's patients, this medication is given only to patients who are on Sinemet and need additional help (the Sinemet dose is usually then decreased) . Eldepryl comes in 5 mg tablets, and the dose is generally one tablet once or twice daily (maximum dose).

Date: Friday, May 07, 1999 3:37 PM
Subject: Sinemet for RLS

I had been on Sinemet CR 50/200 for seven months. My neurologist started me off with one tablet per day in the evening The first month was wonderful. Then I began experiencing RLS and severe aching in my legs earlier and earlier in the day so the doctor increased the Sinemet first to 2 and then to 3 per day at intervals of no fewer than 7 hours and no more than 3 tablets in a 24-hour period.

The Sinemet seemed to take care of my nighttime RLS and pretty much the daytime RLS, but I was left with periods of intense aching in my legs (which at times would go into my arms and shoulders). The Sinemet three times per day would relieve the aching, but since it often took two to three hours to start taking effect and often wore off up to two hours before I could take another, I was left with long periods of having to deal with the aching.

Last month the doctor told me to stop taking the Sinemet (no tapering off,  just abruptly stop taking it) and begin with a low dosage of Mirapex (.125 mg) three times per day. This worked fine for the RLS, but then I was left with intolerable, agonizing aching all the time. The pharmacist suggested that I go back to taking the Sinemet along with the Mirapex, gradually tapering off with the Sinemet. The doctor agreed with this.

However, I can't seem to get off the Sinemet without the aching returning. I'm still taking one Sinemet every day, but sometimes I must take two. I feel I'm in a Catch-22 situation. I believe the Sinemet caused the intense aching to begin with, but that it also relieved it (for limited periods of time). This aching is so all-consuming: I feel at times that I am about to lose my mind. I can't think, reason, or remember, and feel as though I might just blow up. There are times when I can do nothing but cry. Have you ever heard of anyone with my experience? My doctor just shakes his head and tells me he has never heard of such a reaction to Sinemet.

I should tell you that I take a Stresstab (which contains 5mg of B6) each night for "burning mouth" and also a multivitamin (which contains 2mg of B6), plus one 50mg tablet of Elavil. Could any of these have interacted with the Sinemet to cause my aching legs?

Now added to this mix: I began to take Elavil 23 years ago after having had back surgery. I found out that taking the Elavil also relieved the aching in my legs (which started when I was about 22 years old, but which was nothing in intensity compared to what I'm dealing with now). With the Elavil, plus Ace bandages and later surgical hose, the aching was held in check. And then I started on Sinemet for RLS and I have been as close to hell as I have ever been.

The Ace bandages and surgical stockings are worthless in my present state. I apologize for the length of this sorry tale. I hope and pray that you can give me some guidance and direction on how to deal with my problem.

With many thanks for any way in which you can help me.

Rita B

Medical Reply

Your problem with Sinemet is actually very common. It is called rebound and augmentation. This seems to happen only with Sinemet, not with the other Parkinson's disease medications. The cause is unknown, but when the Sinemet dose is greater than about 2 of the 25/100 tablets (or one of the 50/200 tablets), then this can readily occur. What happens is that the RLS problem comes back quickly and much more severe when the Sinemet wears off. In addition the RLS pains start earlier in the day and again is more severe.

Your doctor's treatment is essentially correct. Mirapex should be able to replace Sinemet and resolve your leg aching. You may need a higher dose of Mirapex (even up to six or eight per day). As long you are on some Sinemet, the rebound and augmentation will persist.

It is usually better to taper off of the Sinemet while increasing Mirapex. There still may be a short period (generally no more than several days to weeks) when the leg aching will slowly go away. I recommend Ultram or a narcotic (Tylenol #3 or Vicodin) on an as needed basis (every 4-6 hours), to get you over the interval of leg aching from the withdrawal of Sinemet.

A Reply from Rita B.

Date: Saturday, May 08, 1999 12:29 PM
Subject: Sinemet for RLS

I was very surprised and pleased to receive a reply from someone so quickly and am grateful to you for the guidance you gave me in your response. I am going to try to work things with my doctor so I can follow the advice you gave me. It seems such a sensible plan and has filled me with hope that I'll eventually be free from the adverse effects of Sinemet.

Until I received your email I was having the blackest thoughts that I might be stuck with this achyness the rest of my life. Thank you very much. I'll let you know how things turn out.

Gratefully,
Rita B.

Date: Friday, May 07, 1999 7:05 PM
Subject: RLS HELP!

I believe I am suffering from RLS and have been very frustrated in my attempts and efforts to, not only be properly diagnosed, but have the doctor know how to handle the condition.  Some background:

Towards the latter quarter of last year, I began to feel very fatigued. My legs felt as if I had been on them, in new shoes, all day long, and I could not escape the soreness (there was no burning). I finally went to the doctor in early January, and discovered that I had Type II diabetes, with my blood sugar well over 400. I began to take several medications, Glucotrol, Glucophage and Rezulin.

A few weeks later, as the pain in my legs increased, I went to see a neurologist. he determined that I had tarsal tunnel in both ankles and general neuropathy ( a nerve conduction test was given). He put me on Pamelor. As my blood sugar decreased (I was able to lower my blood sugar levels very quickly, and they continue to be excellent -- last reading a few days ago of 106 - and I am now only taking the Glucotrol).

The pain in my legs was increasing, I was having a very difficult time sleeping, which I believed was making things worse. Ultimately, I went to see another neurologist for a second opinion. He agreed with the first, and made a casual reference to RLS in passing - I never thought anything of it. He prescribed Neurontin - I ultimately increased the dosage to 1500 mg per day, and Elavil. Still, the pain continued.

About a month ago, I contacted a friend of mine's brother, a very well-respected neurologist in Columbus, GA. He called me one evening and asked me if, when I was having these pains in my legs -- burning, sharp needles, etc. - if I would get up and walk around. I said that I did, that it provided some relief. He was reassured, and told me that most of my problem was due to RLS.

He told me that he usually had his clients alternate between four different medications - to decrease dependency, and for other reasons as well. These included Sinemet, Klonopin, and a few others. He also said that the dosage I was taking for Neurontin --- the other neurologist had me stop taking it, saying he felt it wasn't working -- was actually bordering on the amounts necessary to BEGIN seeing results --- usually prescribing 2400-3600 mg per day (I stopped at 1500).

I called my neurologist and shred this information. He would not put me back on the Neurontin - but did prescribe Sinemet. he also prescribed Oxy Contin for my pain.

The Oxy Contin made me itch terribly and I stopped taking it after a few days -- it did nothing for my pain either. The Sinemet -- I don't know. I also itch with it (I take 25/100 - 3 times a day), and don't really see any great results.

I have seen the sharp pins and needles/burning has decreased. But I still experience a numbing, and pain in my feet --not just at night, but throughout the day. the only thing that seems to have any affect on me, pain-killing wise, is Vicodin - 1500 mg, which I try to take only once every other day, but, the past few days, I've needed it daily.

Anyway..... I apologize for this long-winded note.

Thank you for your time and input.
Steve K.

Medical Reply

Your case is clearly more difficult than the average case. You might do well with Mirapex, rather than Sinemet. Klonopin is not our first choice as a sedative, but rather we recommend Ambien or Xanax.

Your dose of Vicodin is rather high for one dose. The Neurontin dosage can be variable, but the dose that you were taking was reasonable.

It is still not clear that you do indeed have RLS.  It may be helpful to get an opinion from a sleep specialist well versed in RLS.

Date: Saturday, May 08, 1999 7:38 AM
Subject: RLS, depression and Permax.

I am on Paxil for depression and Permax for RLS.  I have two questions:

1. If the Paxil causes the RLS to worsen, do you have any suggestions as an alternative medication for depression?

2. I have been on Permax since Oct. 1998. I have also gained 10lbs since Oct. Is it possible that the Permax could cause weight gain? If so do you have any suggestions as an alternative for the Permax?

Thanks for you help,

D.L.

Medical Reply

Paxil may help or worsen RLS. The same can be said for all the other antidepressant medications. Each person may react quite differently to each antidepressant medication and thus it is very hard to predict which one will help or hinder any given RLS sufferer.

We have heard of a few patients gaining weight with Permax, but that is an unusual side effect. You might want to change to Mirapex (which is similar but generally better than Permax) and see if the weight gain gets better.

A Reply from D.L.

Date: Saturday, May 08, 1999 5:09 PM
Subject: Re: Replacement of Permax with Mirapex

Thank you very much for you response. If I am on .05 mg. of Permax twice a day, how much Mirapex should I take? Again, thank you for your help.

D.L.

Medical Reply

Mirapex 0.125 mg more or less will equal Permax .05 mg, so you can substitute one for one.

Date: Saturday, May 08, 1999 11:47 AM
Subject: Klonopin, RLS and Depression.

Is it possible that the Klonopin that I have been taking off and on, is making my RLS worse ?? I stopped taking it and it seems as if my RLS has calmed down considerably. I was only taking 1/2 a tablet occasionally since I did not want to get addicted.

I am now having trouble sleeping and this is in part due to the fact that I have now developed tinnitus after a virus in December that resulted estuation tube dysfunction and tinnitus. I am a 38 female, healthy aside from a fibromyalgia diagnosis (this has gotten much better over the past two years).

Since I have noticed you know a lot about meds, would you suggest an antidepressant that could help, not harm my tinnitus or RLS ?? I will give this info to my doctor.   This combination of maladies is really getting me down.

Thank You for your help !!
Terry V. S.

Medical Reply

It would be very unusual to for Klonopin to cause worsening of RLS, but anything is possible. The Klonopin does help you sleep, but you are right to take it only occasionally, as tolerance can be a very significant problem. Xanax or Ambien is a much better choice for either RLS or insomnia.

Antidepressants can make RLS better or worse and it is impossible to predict how any individual will react to this class of medication. The newer SSRI class of medication (Prozac, Paxil, Zoloft, Celexa, etc.) tend to do better than the older ones, but again this can be quite variable.

Date: Monday, May 10, 1999 12:19 PM
Subject: Re: Requip (see previous letter from Anne G. on May 1, 1999 above on this page)

I've begun Requip: .25mg on 5/4, 5/5, and 5/6; then .50 mg 5/7, 5/8, and 5/9. Some nausea. And I'm beginning to fear rebound. Is this too soon to judge whether the drug will help? In other words, could I be having rebound this soon?

If too soon to give up and try Mirapex, what to do about the nausea? Domperidone? If yes, how does the doctor get it for me?

Thank you,
Anne G.

Medical Reply

We generally do like to treat the nausea, as the anti-nausea medications can worsen RLS. It is better to either slowly increase the medication so that the body adapts to the new drug, or discontinue the drug and try another one.

To avoid nausea with Requip, it should be increased by increments of 1/2 of the 0.25 mg tablet at weekly intervals, until control of RLS has been achieved.

It is still rather early to tell whether or not rebound is occurring from Requip.

Date: Monday, May 10, 1999 9:08 PM
Subject: Thanks and Questions (see above letter, this page on May 3, 1999)

I am not sure if I even have restless leg syndrome. The Klonopin did nothing but make me sleepy. I still get occasional leg cramps, but I think it has to do with the High Protein diet that I am on. I take over 200 mg of potassium plus calcium tablets along with about 96 oz. of water daily and it still doesn't help all of the time.

I get occasional twitching in my calf muscles and I sometimes get cramps in my arms and back. Does this sound like RLS? I try to talk to my doctor (HMO variety) and it's like hitting a moving target. I don't think he hears everything I tell him. Anyway, the twitching is not constant. My wife was diagnosed with RLS in Dallas when we lived there. She said she felt like she needed to run all of the time, and she never could be still in bed at night. She said she does not notice any squirming from me in bed.

Also I am extremely fatigued all of the time, it doesn't seem like I can get enough sleep. Is this also a symptom of RLS? Sorry to keep rambling, but I stopped taking the Klonopin 3 nights ago, and I haven't noticed any difference when I was taken the medicine.

Thanks for your time,
Gordon K.

Medical Reply

As per the previous communication on May 3, 1999, it is not clear that you have RLS. With RLS you should have discomfort in your limbs (often described as ants crawling up the inside of of your leg, or a pulling sensation) which occurs whenever you are at rest and which is associated with an uncontrollable urge to move the affected limb.

RLS does not cause fatigue, but can cause decreased sleep by keeping you from sleeping due to the limb discomfort coming while lying in bed. Many RLS sufferers will have PLMD, which can cause interrupted deep sleep, and result in fatigue, but that is also associated with increased daytime sleepiness. A sleep study is necessary to diagnose that condition.

Klonopin is not the best drug for RLS/PLMD as it is very long acting and causes daytime sleepiness quite frequently. You might want to find a doctor who can spend more time with you and go over your complaints more carefully and arrive at the right diagnosis.

Date: Tuesday, May 11, 1999 11:43 PM
Subject: Restless leg syndrome and Evista

I have had Restless Legs since childhood. In the last month they have become much worse. Also, I have a great deal of difficulty falling asleep. If I can get to sleep soon enough, sometimes I am not bothered by the restless legs.

I have been taking Evista for strengthening bone mass. It seems that my problem became worse when I began this medication. Has anyone else tried this medication who has restless legs? Did it bother you? I am scheduled for my initial appointment with a sleep clinic on Friday, May 14th. I am praying for help as I feel I cannot keep on going no more than I have slept in the last month.

For a number of years, I have been taking 5mg of Valium at bedtime and a Darvocet. I have begun taking an Esgic lately, but here it is almost 3:00 a.m. and I am up. I have been walking the floor, but am not sitting at my computer.

I am a 69 year old female. My mother and both of my sisters had RLS, also.

I would like to hear from someone,
Bennilene

Medical Reply

Evista is a relatively new drug, so we have not heard anything yet about its effect on RLS. It is similar to the estrogen like hormones, without having an effect on the uterus. We have had many patients complain that their RLS got worse (or even better) after starting hormones, so it is quite possible that Evista will also have an effect on many RLS sufferers. We will post your letter and see if others have had the same experience.

If you are sure that the Evista is causing the problem, speak to your doctor about going off it for about a month to see whether or not it is the culprit for worsening your RLS. If it is, then there are other osteoporosis treatments such as Fosamax or Miacalcin which work on a non-estrogen hormonal basis.

If your RLS does not get better despite everything else that you try, consider having your doctor put you on Mirapex (see our RLS Treatment Page for specific details on using this drug) which should help you considerably.

Date: Friday, May 14, 1999 10:00 PM
Subject: Clonazepam addiction

I have been on Klonopin (clonazepam) for many years for RLS, and then it stopped working, so have been tried on many of the Parkinson drugs, but to this point nothing has worked. My question is how to do I go off clonazepam?

The doctor has tried twice, each time by tapering the dose back, but each time I have landed in the hospital with dehydration, jerking, sweating, heart palpitations, lack of muscle control, so have been put back on the drug. I know it is not good to stay on and yet I am very scared to try going off again, because of the terrible side effects.

What would you suggest????

Susan J.

Medical Reply

Try switching to Xanax, 0.25 mg, while slowly decreasing your Klonopin dose. Then increase the Xanax slowly while continuing to taper off of Klonopin. Since they are both in the benzodiazepine family, the Xanax should prevent the withdrawal problems from Klonopin.

Xanax is a much shorter acting sedative and you should be able to take drug holidays from it by using Ambien, which is not a benzodiazepine.

Date: Saturday, May 15, 1999 6:16 PM Subject:
Warning re Sinemet CR ; request for alternative to Ambien

Thanks for your wonderful site ; I’d feel very lonely without it. I’m a 54 year old male, who has had RLS forever. Only in the last 6 years have I had real information about what it is.

A warning about Sinemet: I tried Sinemet CR and Sinemet 100/25 with some success, supplemented by 25mg of Talwin. After a number of months, the Sinemet rebound and augmentation was so severe, despite periodic drug holidays, that I switched two weeks ago to Permax, with great success. I now no longer use Sinemet at all.

The literature, including what I read on your site about it, is not clear that Sinemet CR can trigger rebound and augmentation; it certainly did in my case, as I had stopped the 25/100 long before I complete the switchover to Permax, and I was still getting late morning RLS from the Sinemet CR alone. Nowhere have I read of that; all the sites say that 25/100 can give you grief, but they are not at all clear about CR. In my experience, both can cause rebound and augmentation.

I still have two sources of sleep problems:

(1)  With Permax I currently get as much as six hours of non-stop sleep, for the first time in years. The bad news is that I cannot get to sleep before 1:15 a.m. no matter what I do It appears that my circadian rhythm is off. Do you know of any ways to alter the sleep cycle so that I can get to sleep at, say, 11 p.m., and be in synch with the rest of my family ?

(2)  I largely gave up the Talwin because it can be so addictive. Instead, I am using Hycodan (hydrocodone bipartate 5mg) two or three times at night. I’d much rather be using something like the Ambien you mention, which I understand does not ruin the quality of your sleep( I feel dopey and thick in the morning). Ambien is not available in Canada. Can you recommend another sleep/rest-inducing drug , like Ambien, that does not mess up the sleep cycles or the sleep quality and would work well with Permax ?

Thanks for being there for us,
A. W.

Medical Reply

Sinemet CR does cause as much rebound and augmentation as the regular Sinemet. I just never thought to specify, as I do not recommend Sinemet in general any longer.

Hydrocodone is just as addictive as Talwin. Ultram would be a better substitute. Staying off this class of treatment is even better, if you can.

Xanax is a good alternative to Ambien. Just use the lowest dose and take regular drug holidays.

Date: Friday, May 14, 1999 2:50 PM
Subject: RLS Daytime symptoms

My mother lives in Rancho Palos Verdes. Wish I could come to your meetings, but the dates on the website are old, and I live in Santa Fe, but might try to plan a visit to her around a meeting date.

Anyway, to get to the point, I have the nighttime RLS symptoms under control so I can sleep with 100/10 Sinemet and 2 mg Klonopin, 20 mg Baclofen, but I am having trouble with daytime swinging legs and tapping my feet. It drives me crazy.

I have a brain injury and chronic pain and chronic depression so I also take in the AM 40 mg Paxil, 20 mg Baclofen, Vicodin ES x 2 pills (every 4 hours in daytime), 650 mg Quinine (they thought this would do it for the daytime, but it is doing nothing, been on it for 3 weeks), 25-50 mg Seroquel, 50 mg Lamictal, 20 mg Oxycontin. Mid-day I take 20 mg Oxycontin, 20 mg Baclofen and continue the Vicodan ES. At night I take 25-50 mg Seroquel, 3 mg Risperdal, 50 mg Lamictal, 100/10 Sinemet, 20 mg Oxycontin, 20 mg Baclofen, and I think that is it.

I am under the care of pain specialists, a psychiatrist who does all of my drugs but no counseling, a counselor, massage therapy usually once a week (I go to a local school to the graduate clinic so as a person with a disability, I can get a hour massage for $10 special rate), a women's support group, a traumatic brain injury Support Group (I was in an auto accident in 1984 and suffered a contra coup brain injury with cognitive function and emotional/psychological symptoms, etc.), and an acupuncturist once a week for all of my symptoms, including the RLS. I still have not relief from the daytime symptoms.

Can you help me out with some recommendations?? Thanks in advance for your consideration.

P.S. I am white, 43, female, married, use a service dog to get around, drive only around town.

Yours,

Nat D.
Santa Fe, NM

Medical Reply

Your case is obviously quite complex. I would suggest trying Mirapex .125 mg during the daytime. It is in the same class of Parkinson's disease medication as is Sinemet, but it is much better than Sinemet for RLS. There is no sleepiness associated with Mirapex generally.

Forget the quinine, as it rarely helps RLS and you are on enough drugs already.

Date: Monday, May 17, 1999 5:43 PM
Subject: Information on RLS and ferritin and anti-nuclear factor

Are all us RLS suffers high in anti-nuclear factor (mine is 2560, along with iron saturation of 18)? My ferritin level is 49. They have ruled out lupus. My age is 60.

Is the any other blood test I should be having, to rule out other problems? I do not feel I have Fibromyalgia. My symptoms are sever fatigue, loss of memory, problems spelling and wording sentences while reading and talking.

My doctor has me taking a Iron supplement. Do you ask your RLS patients to go off there vitamins if it has iron and vitamin’s C a week prior to have their iron text done ?

Medical Reply

There is no correlation between anti-nuclear factor (usually associated with Systemic Lupus like conditions) and RLS. Taking vitamin supplements with iron (these have usually minimal iron anyway) or vitamin C do not affect the serum ferritin levels regardless when they are taken.

The problems with thinking that you have may be due to decreased sleep from RLS/PLMD or of course many other problems.

Date: Sunday, May 16, 1999 3:18 PM
Subject: Restless legs inexpensive treatment?

I am an 18 year old female that has been experiencing RLS periodically for several years. I have not tried any drug therapy, and am wondering if it would be beneficial to start before the leg twitching gets any worse. I experience them whenever I sit for long periods of time (in class, movie theaters, etc.). I attempt to relieve the discomfort by moving my legs, walking, pounding on them, and laying down and propping them up on the wall to make them fall asleep. I do have problems falling asleep many nights, but I don't notice movements during the night or wake up during the night.

My aunt and grandma also have RLS. My aunt has been on depression medication. My grandma experiences a racing heart (fast heartbeat) with no known cause. She also has mitral valve prolapse and I was wondering if there was a correlation.

I often pound on my legs so violently or ask others to do so for me that I have bruises the next day. I most often have the sensations at night, but sometimes after sitting for long periods of time. Movies are torture, and I always request to sit in the aisle seat so I can stretch my legs. Long car trips are also distressful, and I have several upcoming ones planned. Is there anything I can be taking or doing to alleviate the symptoms immediately, but at a low cost. I am a college student, and do not have good health insurance.

I always heard my grandma talk about her restless legs, but not until recently did I know there was a diagnosable condition. It is a relief to hear that there may be something to alleviate this pain and discomfort and I empathize with all others afflicted by it.

Megan L.

Medical Reply

Your RLS condition sounds like it is reasonably mild at this point. The best treatment is to do what you have already been doing with simple stretching of the affected leg.

If you are going for a long car/plane trip and do not need to be alert, then an occasional Tylenol with codeine, #2 or #3 should be able to take care of the problem. You can use this for the occasional night when you have problem falling asleep due to RLS.

Better treatment would be Mirapex, as it does not cause drowsiness, but it is much more expensive.

Date: Tuesday, May 18, 1999 9:18 AM
Subject: Is it really RLS?

Both of my lower legs just along the peripheral nerve hurt. I have read many descriptions from others about their RLS pain, and I can't relate to these. My pain started shortly after a bad car accident many years ago and over the years just got worse and worse. All I can say is that my pain is definitely localized to the area described but is excruciating at times. My legs also hurt night and day, which the doctor says isn't characteristic of RLS.

The neurologist states I do have RLS and put me on different Parkinson's disease drugs over the years, but to this point nothing has worked. I am now off work, due to lack of sleep, concentration, pain, and do not know where to go from here.

I would welcome your suggestion, on what you feel would be is the next avenue to take. Is there a special test that could be run to determine, if indeed I do have RLS?

Thank you,
Susan J.on

Medical Reply

The test for RLS is simple. If your pain is much worse at rest or when going to bed and at the same time you have an irresistible urge to move your legs, then you have RLS. If your leg pain is unrelated to activity and you have no urge to move them, then it is unlikely that you have RLS. No other tests are really needed to rule this disorder out.

Date: Tuesday, May 18, 1999 11:50 AM
Subject: RLS and doctor awareness.

Thank you for all the informative information on your website. I have been suffering from RLS & PLMD for years and never knew it. My wife had me see the doctor when my shaking kept waking her up and she couldn't stand it any more.

The doctor prescribed Amitriptlyne (Elavil) to help me sleep and mentioned that it could possibly be RLS. I noticed that the antidepressant didn't help me sleep, and seemed to make it worse. So, I looked up RLS on the Internet and found your site.

After reading that antidepressants can worsen the symptoms, I began to wonder why the doctor would prescribe Amitriptlyne. Is there a lack of knowledge about RLS in the medical community?

I've stopped taking the antidepressant, and I'm trying to get the doctor to prescribe Ambien or Xanax, as recommended on your site. Again, thank you for the very informative, well-done website.

Matt J.,
Mesa, AZ

Medical Reply

There is an incredible lack of knowledge in the medical community about RLS. Most doctors may have heard about the syndrome, but they would not be able to tell you much about RLS. It is also very common for doctors to prescribe the wrong drugs for RLS, generally because they do not look up the disorder and think that they actually know something about it.

If your RLS is mainly at bedtime, mild and intermittent, then a sedative such as Ambien or Xanax would be fine. If it is more persistent, then you might want to consider Mirapex at bedtime.

I am 40 and developed RLS probably since I was about 25. My great aunt complained about it, although my parents and siblings do not.

Several over the counter herbs have provided me with relief, and through several other RLS web sites I am aware of other people they have helped.

First would be a product called SILENT NIGHT by NATURE's WAY, available at GNC Stores. My wife bought me this product when she saw it in the store, and it worked the first night like a miracle. I slept like I hadn't slept in years. The "active ingredient" is VALERIAN ROOT. However, when I finished the bottle she bought me, I bought another VALERIAN ROOT product and did not get the same relief. I then repurchased SILENT NIGHT, but never had the initial relief I had from the first time I used the product. Several people have emailed me about their success, so I think it is worth a try. As I recall, about $11 for a 1 month supply. What was odd about this experience is I could feel the restless signal go from my brain, down my spine and then stop in my lower back instead of proceeding to my legs.

Second, I read about PYCNOGENOL on an RLS site...it is available at most drug stores. I tried this, and it also worked for about 30 days and then I went back to normal.

Third, I am not a caffeine person, but I do have 1 caffeine soda a day, typically either Coke, Dr. Pepper, or Mountain Dew. I never drink coffee. When I quit caffeine altogether, again I had about 30 days of sleep, but then slowly the RLS came back. I now understand chocolate products typically have caffeine, so I am now going to remove all chocolate from my diet.

Typically, to provide some relief to my legs, I sleep on the floor on my side, with various pillows between my legs, and one between my upper arm and chest. Some nights this works better then others.

James Z.

Medical Reply

Thanks for your observations on what has worked for your RLS. If your RLS gets worse as you get older (which is unfortunately not uncommon), then see your physician for possible prescription medication.

Date: Thursday, May 20, 1999 11:52 AM
Subject: follow up re: addiction to clonazepam (see previous letter above on May 16 and May 18, 1999)

Thank you so much for your reply on my addiction to clonazepam. I saw my doctor who prescribed Xanax at .25mg four times a day. Is this the usual dosage that you would recommend?  I do not want to become addicted to this as well!!.

Also, in Canada or at the least Saskatchewan, the province where I live,  does not have the drug Ambien available. Is there another drug which would do the same, so eventually I could go on a drug holiday as you suggested?

It is so wonderful to have you reply to my concerns, as the doctors I have been dealing with know so very little about RLS, and I have no where to turn.

Susan J.

Medical Reply

You did not indicate in your original letter what dose of Klonopin you were taking. For RLS, the sedative should only be given at bedtime. If you were taking the Klonopin at bedtime, then you will likely only need Xanax at bedtime. Klonopin is a long acting drug and leaves metabolites in your system, so some users will have the drug effectively working in the daytime, so may need a dose or two of Xanax in the daytime while withdrawing from Klonopin.

Four times a day is a reasonably high dose for Xanax (when not treating a severe anxiety disorder). It is no problem that you have been taking this dose for the past week, as it can be easily tapered. Discuss this with your doctor, but I would recommend that you start decreasing the daytime doses with an aim to taper them off completely.

Unfortunately, Ambien is the only non-benzodiazepine sleeping pill, so there are no substitutes for this medication when wanting to take a drug holiday from Xanax. I do strongly advise that you take regular drug holidays (2 days off every 2 weeks), or else you will get tolerant of Xanax also.

If you need more help with your RLS, consider Permax or Mirapex.

Date: Thursday, May 20, 1999 12:04 PM
Subject: Restless Leg Syndrome

Good afternoon My name is Pat, and although I haven't been diagnosed with 'Restless Leg Syndrome' I know I have it.

Since November, 1969, I was in bed trying to go to sleep and all of a sudden my hands had this funny sensation. It took me a long time before I went to sleep. I'm guessing, but it had to be a few months later, this funny sensation went up both my arms and stopped at my elbows. Needless to say, I was going crazy. But all through this it took me a while to go to sleep. The feeling never left me. Probably 6 months later, it started in my both feet and later which wasn't that long went up to my knees. For years, I went to all kind of doctors telling them of my problem. I'm sure most of them believed I was a hypochondriac.

I probably had almost every test to man, and nothing came up. I had a CT scan and an MRI. Of course the both were years apart. I cried a many a night. It wasn't until around 1974, I started taking hot baths to relieve the sensation. On the average for a week, I would have this problem, maybe 3 to 4 times. I remember I would try and sleep with my legs up in the air against the wall, crying at the same time. I prayed so many, many, many times that the good Lord would relieve me of this wormy, crawly thing, that's how I describe it. Anyway, I still have it. I still take hot baths to relieve this sensation. And 70% of the time, the feeling goes away, until the next day, or when it occurs again after I take these hot baths.

I only found out by accident when I went to the doctor on Monday 5-17-99. I was there for another problem, and asked him to prescribe Xanax for me. He asked me why, and I told him. I told him about 5 years ago about my problem, because I changed doctors off and on, but I'm sure him having a lot of patients he couldn't remember.

Off and on for years I was on Xanax, and it help quite a bit. But I didn't want to stay on it the rest of my life, because I didn't want to get addicted, which I didn't. I was off of for 9 months, only until the Monday, 5-17-99 when I went to the doctor He told me that I probably had this disease, just by the way I was telling him of my symptoms. He also told me if the pills don't help to call him, and he would have me go to a sleep center and they would monitor me. The only problem is there are times I don't have this crazy feeling.

I can bore you with so many, many, many, times, I cried and walked the floor for this crazy sensation to go away, but you all know about it.

It has gotten a lot worse these 30 years.

Thank you,
God bless you,
Pat

Medical Reply

Thanks for your letter. Consider a Parkinson's disease drug such as Mirapex if you find that you need Xanax daily. There is no concern about addiction/tolerance with the Parkinson's disease medications.

Date: Saturday, May 22, 1999 5:50 PM
Subject: Tickling Sensation in Back (see previous letter on Page 18, March 25, 1999)

I had written to you about a month or so ago about a tickling sensation in my back. I've been to a neurologist and was prescribed Mirapex (the lowest dose) which immediately seemed to end my restless legs, but has done nothing for the sensation in my back.

X-rays of my spine showed nothing particularly wrong and I just went for a blood test to see if anything is wrong with my B12 levels. (I have been a vegetarian for 22 years, but I do occasionally drink milk and once in a while eat cheese or yogurt). The sensation in my back drives me crazy. It never stops except when I sleep.

Gayle W.

Medical Reply

I am glad to hear that the Mirapex worked well for the RLS. It is less likely that the sensation in your back is RLS as it should have worked on the that discomfort as it did on the legs. It may be difficult to figure out what is causing the back problem.

Date: Sunday, May 23, 1999 10:43 PM
Subject: Restless Legs and Percodan

My doctor and I have come up with a plan for me to take 5 mg of oxycodone (Percodan) at bedtime. This works SO well for me. I now have the entire BODY being restless. That's how it affects me. It may have been RLS a few years back but now it's R "B" S !

If I do nothing for the symptoms, I am awake until about 4 am. I'm wondering about how long and how frequent a drug holiday should be from oxycodone. I try now to take it every other night and try something else (that never works) on the alternate nights. I get such restful sleep with this medication that I want to take it every night forever.

Please let me know about the drug holiday from it; how frequent and how long in duration.

Thank you from a life long nightwalker!

Medical Reply

The drug holiday with oxycodone (Percodan) should be at least 2 days off the drug every 2 weeks. Some patients do well alternating Percodan (or other narcotic medications) with tramadol (Ultram), which is a non-narcotic synthetic pain killer.

Mirapex would likely work very well for your RLS (RBS in your case) problem, and might even eliminate the need for a pain killer. You can also use Mirapex without concern about drug holidays, so it could be an every night drug.

Date: Monday, May 24, 1999 7:44 PM
Subject: Restless Legs and Mirapex

I have a problem with Mirapex, and hope you can help me with it. I take one pill (.125mg) at 6:30p.m., another at 8:30p.m., and another at 10:30p.m. It does the trick as far as my restless legs are concerned, but I'm having a great deal of trouble with being so tired during the day. My eyes feel so heavy, and I feel like a zombie most of the time. I take a nap every day, but it doesn't seem to help much.

I would like to take a holiday from it, but what do I take in it's place?

I would appreciate any advice you can give me. Thanks,
Evelyn A.

Medical Reply

It is difficult to answer your question without more information. Did you have the zombie like feeling before you went on Mirapex? Is this a feeling of fatigue alone, or of fatigue and sleepiness (and if so, do you actually fall asleep during the day?)?

If the RLS problem is resolved with Mirapex, there is clearly another problem such as PLMD (which should have been taken care of by the Mirapex) or sleep apnea which could be responsible for disturbing your nighttime sleep (and possibly even your daytime naps) to make them non-restorative. Depending upon your answer, a sleep study may be in order.

Generally, no drug holiday is necessary for Mirapex.

Date: Tuesday, May 25, 1999 10:12 AM
Subject: re: medications (see previous letter above on May 20, 1999)

I did not take the Xanax last night, because of the holiday you suggested so I would not become addicted to this drug as well. I was literally awake all night, and was wondering if there is something else I could use on the nights I do not take the Xanax.

You also suggested that I look at taking Permax or Mirapex, but this was tried in the past with no relief, and the Neurontin I am now taking also is not working. The doctors seem to know little about this condition, and I am left hanging......

I look forward to hearing from you with any suggestions to help me. What would be the correct dosage for Mirapex or Permax, if I was to try that avenue again? I am only 5ft. and weigh 95lbs. I am finding it so difficult to cope with the ongoing pain, and sleepless nights!!!

Thank you in advance,
Susan J.

Medical Reply

You have been on benzodiazepines sedatives for a long time and are also taking a high dose, so it may be very difficult to just stop them. Also, without taking another RLS drug, you will have great difficulty sleeping. We do, however, still suggest that people take regular drug holidays, even if they get very little sleep during these holidays. Unfortunately, you cannot get Ambien in Canada, which is a very good compromise to use for your drug holidays.

Mirapex generally works very well for RLS. Some may need a higher dose, but start this drug at one 0.125 mg tablet (up to 3 times per day), and you can increase the dose by one tablet every 5-7 days. You can increase each dose up to about 4 or more tablets.

Date: Wednesday, May 26, 1999 8:49 AM
Subject: Mirapex and insomnia

I have tried the various Parkinson's medications with varying success. Sinemet was a disaster, Permax caused me to pass out, Requip was ineffective. The only medication that works, consistently and well, with tolerable side effects is Mirapex.

Unfortunately for me it causes chronic insomnia. While it is clearly better to lie awake without twitching, I am constantly exhausted. Now that I take Mirapex I am able to, for example, sit through a movie, but now I am too tired to go to a movie. I am 56 years old and see my productive years dwindling away.

Any suggestions?
Kathy

Medical Reply

Mirapex occasionally causes insomnia. When it does, it is alright for daytime use, but other agents should be considered for bedtime.

What I would suggest is Xanax at bedtime. If it puts you to sleep, the RLS will not be a factor at night. Do take regular drug holidays, or at the very least, use Ambien for the drug holidays.

If the bedtime sedative does not work by itself, you can add a small dose of a narcotic (codeine, Vicodin). Another choice is a trial of Neurontin.

Date: Wednesday, May 26, 1999 6:23 AM
Subject: Rash with Mirapex

You were such a help to me during my bout with eczema, I thought you might like to know how it all turned out.

Mirapex worked extremely well, but caused severe eczema. What a terrible disappointment this was to me inasmuch as it was such a perfect solution for me re the RLS! I had just told my RLS support group how it completely stopped my RLS in its tracks!

This might be valuable information for you in case someone else experiences what I did. I am now on Requip. I am having a time trying to find the right dosage, but I will eventually I am sure. I am taking .75mg twice a day right now and it appears to be pretty good.

I have just been diagnosed with Type II diabetes. Wow! Life is sure getting to be a challenge.

A member of my RLS support group has called to tell me she had her ferritin level checked. However, she can't find the information from the RLS Foundation which indicates what it is supposed to be. I just checked all my newsletters and didn't come across it either. Do you have any information about serum ferritin levels.

Thelma

Medical Reply

The serum ferritin level should be above 45. You can always find this type of information on our RLS Treatment Page on the section discussing iron therapy.

Too bad Mirapex caused a reaction, but Requip should do as good a job, hopefully without side effects.

Date: Wednesday, May 26, 1999 8:22 PM
Subject: Not alone with RLS

I am so happy to find this informative site. I have had RLS for 6 years, only in the past year was I fortunate enough to find a physician to listen and help. My legs hurt most of the time, always worse at night, I can remember describing it to the doctor as "cold air around my bones", other times a tightness or burning feeling with some areas of the leg more painful than others.

I have been awake many nights stretching, using heating pads, going to the kitchen for another drink of water and "something for sleep and pain".  I have tried tricyclic antidepressants, had epidural pain blocks, spent thousands to no avail.

Now I am better.  I say that hesitantly, praying I can maintain relief on my present meds which are Neurontin and Darvocet. The Neurontin has made a great bit of difference.

Thank you for sharing your stories and advice, I am so relieved to know I am not alone.

Toni, 36 years old,
GA

Medical Reply

You are definitely not alone. At least 5% of the population has RLS. I am glad to hear that Neurontin and Darvocet are working well for you. If you need more help in the future, you may consider adding Mirapex.

Date: Wednesday, May 26, 1999 9:39 PM
Subject: Foot Zoning for RLS.

This is going to sound really crazy. (Especially if you've never heard of it !) I found some relief from RLS with foot zoning. This is a treatment (I believe out of Sweden) that is one step beyond Reflexology. A zoner is trained to manipulate the foot (it hurts !) that will positively affect different areas of the body.

The woman that does my feet worked on the area of the foot that corresponds to the spinal fluid and also the cerebellum. My symptoms have lessened since my last foot zoning, especially my afternoon and evening symptoms. (I've also been alternating Oxycodone with Ultram at bedtime.) I told you this would sound crazy !!

I'm planning to continue this experiment to see if it really is working or it's just my imagination, but as you all know, these symptoms ARE NOT in your mind ! If you know of anyone in your area that does "foot zoning" you might try it. A reflexologist might work if they are well trained but it's not exactly the same as a foot zoning.

Sincerely,
A Nightwalker (but not crazy, honest !)

Medical Reply

Thanks for your letter. We will place it on our web site and see if others can benefit from your experiences.

Date: Friday, May 28, 1999 10:18 AM
Subject: Relief from Calcium

I just wanted to write and thank you for having this informative website for RLS sufferers. I've been reading letters on your website and, thanks to the suggestion of taking calcium, I am sleeping better at night. I take one 1000mg tablet of calcium carbonate (Tums Ultra) at bedtime and another one if I should wake up in the middle of the night (which I usually do).

I've been averaging around 6 hours of sleep per night which is amazing for someone who had been operating on 4.5 to 5 restless hours a night for the last two years. My sleep is also much less restless than before the calcium. I have been taking the calcium for the last two weeks, and I added 500mg of magnesium at bedtime two nights ago. I am going to try it with half the amount of magnesium because of side effects (leg cramps and loose bowels) which were not present before taking the magnesium.

I read a letter on your website (from Enid W.) dated May 13, 1997 which mentions knee cracking. I've had cracking knees for as long as I can remember. It didn't occur to me that it could be associated with my restless legs (actually, in my case, it's my knees that are restless).

I feel bad for those who must resort to prescription medication for RLS. I guess I'm pretty lucky in comparison with many other sufferers.

Thank you so much for being here.

Jeanne W.

Medical Reply

I am glad to hear that you are doing well with calcium therapy. Unfortunately, it only seems to help a minority of RLS sufferers. Cracking in the knees is likely just a chance happening with RLS, as they are not usually associated.

Date: Monday, May 31, 1999 12:50 PM
Subject: Requip and problems sleeping. (see previous letters this page, May 1 and 10, 1999)

I took your suggestion and am slowly increasing my daily dose by 1/2 of a 0.25 mg Requip every 6 days. I'm up to 1 mg per day now and my quality of sleep is improving. I feel so much more alert, although I'm still on 0.75 mg of Klonopin per night. (I will get that down just as soon as I can.)  Now the problem: I'm still waking up 3-4 times a night; sometimes I'm aware it's my legs and sometimes not. What's a typical dose of Requip such that I can get this number down to 1 or 2 times?

Thanks as always for your help.

Anne G.

Medical Reply

The typical/usual dose of Requip is still hard to define. We are waiting for more studies to be published. Speaking from my experience, I would say that the average dose range is between 2 and 6 of the .25 mg tablets per day.

Your awakenings at night may be due to decreasing the dose of Klonopin. As your body gets used to the lower doses, you will probably sleep better.

Date: Tuesday, June 01, 1999 1:53 AM
Subject: Sinemet possible side effects of nausea and vomiting

Does anyone have any experience with the side effects of Sinemet? My wife has been taking this medication for a year in combination with Neurontin and its been doing its job.

She is currently in her 8th stay in a hospital (1 of 4) being treated for vomiting. She started April 14 after taking the above night meds. No other differences before that. She has had many, many gastro-intestinal tests run from her mouth to her rectum. They have all been negative. No blockages, no ulcers, no tumors. Motility tests show the digestive system working normal.

They now have moved to this being a mental event. And its possible without going into details that this is the triggering mechanism that is causing the vomiting. But in all this time they have not taken her off the Sinemet until I prodded them at Mayo Hospital in Phoenix to do so, just on the pretense that it could be a contributor since one of the side effects of Sinemet is vomiting. This was discontinued May 28. Vomiting seems to have stopped (although she is also getting psychiatric help at this same time). They are continuing the Neurontin and have increase the dose to offset the discontinuance of Sinemet.

Help from anyone with knowledge of Sinemet, its side effects, long term, particularly vomiting is urgently needed.

Thank you,
Chuck

Medical Reply

Generally, if nausea and vomiting is caused by Sinemet (not very common in the first place), then it should have occurred when starting the medication. After being on a medication for a while, the body will usually adapt, and then the side effects are diminished.

Since this occurred while on Sinemet for a year, it seems less likely that this is the culprit causing her problems, but is sure is hard to argue with the logical cause and effect noted. Unless she is re-tested with the Sinemet to see if the nausea recurs, we will never know for sure.

This should not be a big issue, for Mirapex can be added instead of Sinmet and likely do a better job.

Date: Wednesday, June 02, 1999 1:18 AM
Subject: RLS and IV anti-nausea drugs.

I have a particularly complicated case of RLS. I have had RLS for as long as I can remember (my mother also suffers from it). However, 4 years ago I developed Transverse Myelitis and became paraplegic (I lost movement, but retained most sensation). My RLS got better once I entered my late teens and I thought my ordeal was over until about a year ago (I am now 23).

The RLS returned and my neurologist prescribed Neurontin 600mg which helped. However, just after that the TM hit my GI tract and I am now unable to digest or absorb anything via my GI tract (i.e. p.o. medications are out of the question). I spent six months in the hospital and throughout my stay I was getting Phenergan IV or IM several times a day. The IM shots never caused a problem, but about one out of every six IV shots would trigger RLS. They would then follow up with a 1 mg dose of Ativan. That scenario was bearable, but now that I am home (on TPN...continuous IV nutrition) the RLS has worsened. It seems now that every time I give myself the Phenergan iv, the RLS is triggered immediately and it is taking 2mg of Ativan to calm it down. I am taking the Phenergan less than I was in the hospital and I am desperately trying to figure out what has caused this exacerbation.

While I was hospitalized, the RLS episodes would come in cycles. The Phenergan would trigger it every day for about a week, and then calm down for another several weeks. I got one IM shot of Compazine in the hospital and refused the shot after that because it triggered the worse case of RLS I have ever had. I have had Tigan IM with no problems, but it does not come in IV form and I *must* give all of my meds IV push.

Because of the gastroparesis I am constantly nauseated and am having to choose right now between nausea and RLS. I choose nausea during the day, but it keeps me up at night. I am afraid that having to follow up the Phenergan with 2mg Ativan will cause me to build a tolerance to Ativan quickly. I also hate to "knock myself out" like that on a nightly basis!

I have a few specific questions.
1) Do you know of anything that may have caused this exacerbation? Is there usually a cause?
2) Do you know of any nausea meds that are available IV push that may be less likely to cause RLS?
3) Failing the latter, can you think of any other kind of medication for the RLS that could be given IV push?
4) Would alternating Ativan with another sedative reduce the risk of building a tolerance?

I know that my hemoglobin is low right now (I believe 9 was the reading last week...I just had labs again today). I was somewhat encouraged to read that anemia can be a cause and I will pass this info. along to my pharmacist and ask him about my iron, folic acid, and vitamin b12 levels. I know they are considering a transfusion. I get all of my nutrition, vitamins, elements, etc through the IV TPN.

I realize that I have asked you many, many questions and I sincerely thank you for your time. I assure you that I am very responsible for my healthcare and will discuss any suggestions you may have with my doctor and pharmacist.

Thank you so very much,
Mykella R.
Loxahatchee, FL

Medical Reply

RLS does have a waxing and waning course in most patients. It is therefore not surprising that your RLS went away then returned. The cause of this (and RLS in general) is not known.

Kytril and Zofran are two new anti-nausea agents that do not interact with the dopamine system. They are available in both IV and tablet form. They are used for nausea resulting from chemotherapy and for post-operative nausea.

These drugs are extremely effective, but I do not have any information or experience with these drugs in RLS patients. As they do not interact with the dopaminergic system in the body, I would think that they would not cause worsening of RLS. They generally do not cause significant drowsiness which is quite different than the usual anti-nausea agents.

You are right about your concern that you could become tolerant of Ativan. The best way to avoid this is to take drug holidays of 2 days of the drug every 2 weeks. If this is too difficult, then Ambien (the only non-benzodiazepine sedative) can be used for the drug holidays. Unfortunately, Ambien is only available orally.

The Parkinson's disease drugs are not available in IV form. You could use the narcotics by IV (or even by patch) which can control RLS symptoms very well. They only problem is that the IV narcotics generally do not last very long and may have unwanted side effects (sort of like "shooting up" heroin). Is there a reason that you cannot use the patch type of medication that releases the drug through your skin?

Date: Tuesday, June 01, 1999 3:16 PM
Subject: RLS and side effects with Sinemet (see previous letter this page on May 7,1999)

I originally wrote to you on May 7 about the trouble I was experiencing going off a high dosage of Sinemet (Sinemet CR 50/200 3 times during a 24-hour period). I told you my neurologist had started me on Mirapex,.125mg 3 times per day, and had said to stop taking Sinemet completely. I tried this. However, I was still having severe aching in my legs so I talked to the pharmacist who said that a gradual withdrawing from Sinemet would probably be better.

I called my doctor and he agreed that a tapering off from Sinemet in my case would better. It was several days later that I wrote to you because there seemed to be no lessening of the aching even though I was trying to take less and less of the Sinemet CR. Your reply to me indicated that as long as I was taking even some Sinemet, the augmentation and rebound would remain. Your suggestion was to stop taking Sinemet, continue with the Mirapex or even increase the dosage, and to take Ultram or Tylenol 3 to get me through the rough times until I could get the effects of augmentation out of my system.

I made an appointment to see my doctor at the first opportunity, armed with the suggestions you made in your response to my email. Either my doctor is not aware of the augmentation and rebound effects of Sinemet CR in high doses, or he simply dismisses them. He insisted that Sinemet was not the cause of my aching legs. He wanted me to continue with Mirapex at a higher dosage and to start taking regular Sinemet along with it!

Although I'm usually quite agreeable when it comes to accepting a doctor's proposed treatment, I held my ground in this case and insisted I didn't want anything to do with Sinemet in any shape or form. He was adamant that Sinemet was not the cause of my problem, but I was not to be denied my sure sense that it was very much the cause of my problem. He finally gave in, somewhat unwillingly, to my request and increased the Mirapex to .25mg three times a day and gave me a prescription for Tylenol 3 (Ultram is evidently not available in our military pharmacy) to be taken as needed to get me past the rough times of withdrawing from the effects of Sinemet.

For the first ten days there seemed to be no lessening of the aching and I had to take Tylenol 3 fairly often. But since you had said that it would take time, with the aching gradually diminishing over a period of time (from several days to weeks), I wasn't yet ready to give up hope. Then Day 11 was great--not even a twinge of the aching all day, Day 12 was the same. On day 13 some aching all day but not enough to require a Tylenol 3. Day 14 brought no aching at all. Then on day 15 (today), the aching is severe enough to require taking a Tylenol 3 again.

After all the above, one question: Can withdrawing from Sinemet be so erratic, with the aching lessening and then increasing again before it's gone for good? I fell I'm on the right track; I guess I need a little encouragement and reassurance at this point.

With many thanks,
Rita B.

Medical Reply

It is difficult to be 100% certain that Sinemet was the cause of your leg aching, but as it has gotten so much better off the drug, it sounds like a safe bet that it was the culprit. Regardless, Sinemet should almost never be used at such high doses for RLS.

You did not say what dose of Mirapex you are now taking. You might need a little more to completely relieve the leg aching. However, it is possible (minimally) that the leg aching could be related to something else. It is quite likely that in the next few weeks the leg aching will resolve (possibly with a small increase in the Mirapex dose).

It sounds as if your doctor is a neurologist. They are used to using Mirapex with Sinemet for Parkinson's disease and many are not familiar with the problems of augmentation and rebound that occur in RLS sufferers. It is unfortunate that most RLS patients end up knowing more about the treatment of the disease than their doctors.

Date: Thursday, June 03, 1999 3:58 PM
Subject: Dose of Ultram for RLS

I am pleased with the Ultram I am taking for my RLS.. It seems to help when I take it at bedtime. I try not to take any medications during the day, just at bedtime. I take Oxycodone one or two nights a week just to get a really restful night's sleep because that is what works best for me.

My question is: What is the usual dosage for Ultram if it is taken at bedtime? I want to take enough to calm my RLS but not too much.

Thanks for your answer and for this great website.

Medical Reply

The dose of Ultram is one to two 50 mg tablets at bedtime. Always try to stay on the lowest dose that takes care of about 90% of your RLS symptoms.

Date: Thursday, June 03, 1999 2:07 PM
Subject: I beat on my legs to relieve my RLS, would a vibrator help?

I have been taking clonazepam for about a year, and I still get the eerie sensation in my calves. I have thought of something........a 12 inch by 12 inch strong vibrator. When I worked in a dental lab, we used a small device for vibrating the bubbles out of plaster that was setting. What could work for this?

Is there some sort of machine that I could use? I am not kidding.

Medical Reply

People have tried different devices and methods to physically alter the sensation in their legs caused by RLS. Some of the techniques do cause trauma to the affected limbs, so should not be used. If a simple exercise relieves the symptoms, then no further treatment is necessary.

The clonazepam (Klonopin) only puts people to sleep, it does not alter the sensations caused by RLS. Medications such as Mirapex can obliterate the RLS discomfort and obviate the need for your vibrator (which could cause more harm than good).

Date: Thursday, June 03, 1999 6:28 PM
Subject: Can you help me, please?

My name is Fausto. I am 34 years old. I am Mexican, and I am very happy that I could your web site. Something very strange is affecting the way I move, I walk...I do not know what it is, but I know that it is there.

Before I go on with this letter, I have to tell you that English is not my native language, and expressing my symptoms is very difficult for me, even in Spanish.

It all began seven or eight years ago. I remember that the first thing I noticed was a slight difficulty to remain standing up ... I had to take some steps back., as if someone was pulling me from my shoulders. That was something that at that time did not worry me, I thought it was normal.

One or two years later, I started to experience a strange sensation, a sensation of discomfort, very unpleasant, that was even more unpleasant when I went to bed to try to sleep or simply relax. The way I walked also was affected:walking became slow and clumsy. I started tripping. My legs, specially my thighs felt very heavy.It also became difficult to turn when I was on my bed.

Sleeping is also difficult, because I have this strange feeling, because I cant relax my muscles. My shoulders, my lower back, my thighs, my neck, they are all "strained", stiff,  I don know how to describe it...it feels as if I were making a constant physical effort.

As I told you before, one of the most affected parts of my body is my thighs. If I am sitting on a chair, and try to put my knees together,  that is something difficult. My movements are slow and difficult. When I try to put my knees together, and then apart, and try to repeat this movement, my legs tremble as if I had 1000 ponds around my legs. This is very difficult to explain.

Probably the most disturbing and noticeable symptom is the one I just mentioned: every effort (physical) I make, produces "shivering", "trembling" "shaking" in my muscles .This is particularly noticeable when I do push ups: my arms tremble so much. If I do push ups on my bed, it is even more noticeable, because you can see and feel the mattress shaking I also told you that walking became difficult, and stressing. 

I sometimes think that I walk the way a drunk person would. It is difficult to remain steady in a "standing up position" ( as a soldier). I have to get a hold on things around me: desks, tables, chairs, or I have to keep on taking steps back, to prevent falling And when I am walking, I feel like a robot.

I have seen many doctors. One of them told me I had Parkinson disease.So he put me on Sinemet 25/100 twice a day. I have to admit it: that is the only medication that relieves my symptoms. But the thing that makes me wonder is that after 7 years from that diagnosis, I do not have the typical symptoms: I have no tremor, no rigidity, and I might say that I do have bradikinesia, but the funny thing is that if I want, I can make all sorts of fast movements ( I can run, jump, etc)

I hope all this makes sense to you,  for it sure doesn't to me. Please tell me your opinion. Believe me,  I am not crazy, and I am not making things up. My symptoms are real and very disturbing to me. This thing has affected my life in all aspects

Before I finish this long letter I have to tell you that after a lot of tests ( MRI, spinal tap, x rays, etc), the only thing wrong was a very low level of vitamin B12, do you thing this has something to do with this'? Can you help me please?

Medical Reply

Your symptoms are not very typical of any disease that I can think of. Parkinson's disease is fairly uncommon in your age group, but it would explain the bradykinesia and your response to Sinemet.

The discomfort you have in your legs which occurs at rest and especially when you try to fall asleep, is quite suggest of RLS. This discomfort is also usually relieved by Sinemet. RLS, however, does not have any motor/movement problems. RLS has been associated with low B12 levels, but this is present only in a very small minority of RLS sufferers.

Date: Friday, June 04, 1999 2:37 PM
Subject: Mirapex & Blood Pressure

My question is: I am on Mirapex. I started on two .25 mg a day (one at noon and another at bedtime) and then added half of a .25 mg at dinnertime. It worked for a while, but finally I had to add half a Sinemet 50/200CR in desperation after dinner.

My new neurologist has put me on 0.5 mg Mirapex with instructions to take half a tablet throughout the day,  up to six times (adding up to 3 mg if my math is right). The Mirapex seems to be helping the RLS even though I seem to be unbelievably hungry all the time and have some trouble sleeping. I resort to Xanax or Klonopin to aid sleep.

I also have Atenolol 50 mg which I've been taking my with evening meal for high blood pressure. My BP has been running around 130/80 with the medication. Since I've added Mirapex (and particularly noticeable since dosage is increased), I get quite light-headed and skin gets clammy about an hour after taking Mirapex & Atenolol. If I take my BP (with a new digital machine), it registers between 88/60 up to 105/72. My GP cut my Atenolol in half (25 mg in evening) but last night I had the same light-headed feeling although the BP only went to about 110/92.

I must say that the feeling is sort of frightening and, at my age (78), I worry about fainting/ falling and I don't like not feeling good. This long-winded message is to ask whether you know of any connection between the combination of Atenolol and Mirapex or am I looking in the wrong direction.

Both my neurologist and GP don't seem to know much about Mirapex other than "it hasn't been around long enough to be sure of side effects".

Medical Reply

Your Mirapex dose is getting on the high side for RLS. Most RLS sufferers need only 0.5 to 1.25 mg per day. I do have a few patients who are on about 2 mg per day. Xanax is a good choice for sleeping at bedtime as Klonopin can cause significant daytime sleepiness in many patients.

Mirapex has been associated with lightheaded problems, likely due in part due to lowering blood pressure, especially at higher doses. Usually, the body will adjust to this problem with time, especially if the Mirapex is increased very slowly.

It might also help to take the Atenolol in the morning while taking the Mirapex at night.

Date: Friday, June 04, 1999 10:22 AM
Subject: Mirapex and PLMD onset of action.

I am very much impressed by the information exchanged on your site, have caught up on all your letters, have copied out your Treatment Page, and would like to get into the act.

First of all, I am an 80 year old male, very active mentally with several organizations but unable to get proper exercise due to an unrelated sciatic problem with one leg.

I have been suffering with PLMD (I call it "jumpy leg") but not RLS for some few years, and have been getting excellent advice from a neurologist who has a few patients with the problem. Through him I have gone the typical regimen for RLS,   going from Sinemet to Permax and for several years to Mirapex. The experiences with each have been typical of what others on your site have been reporting. Rebound with Sinemet, better results with Permax but not enough hours before wearing out.

With Mirapex 0.5 mg I am getting mixed results, taking 1 pill "at bedtime" and 1/2 pill during any part of the day when I anticipate relaxing or lying down for any length of time (normally just one time per day). During the daytime I seem to get quite satisfactory results if I take the 1/2 pill an hour or so before needed, but at night I have found it necessary to take the 1 pill at least 3 hours before I retire, which brings it an hour at the most after the dinner meal and, although it is longer lasting than Permax, it still runs out and I will jump at 4-5AM if I happen to wake up. For the record I also take Cardura at bedtime, for marginal blood pressure.

Let me ask several questions:

1. Has anyone else experienced the long kick-in time and, if so, have you worked out the reason?

2. Related to that, I also find that on some nights something seems to be strongly interfering with the effectiveness of Mirapex (I think Permax had the same problem). The jumping is almost as bad as if I had not taken the pill. Is it that you should allow a minimum time after eating? Are there certain foods that are bad? (I suspect spicy foods or Oriental or Mexican types) I already avoid caffeine related products, at least after noon.

3. Finally, from your letters it now appears that REQUIP may be the next treatment. As yet are their any established or suspected reasons for not switching from MIRAPEX? And what are the advantages?

Again, thanks for having such an informative site!!

Newt,
80 in Oregon

Medical Reply

It sounds as if Mirapex is working well for you, but that at times your PLMD is worse. For those occasions, simply take more Mirapex (one and half to two tablets as needed). It is often difficult to know why the RLS/PLMD gets worse, although it certainly could be due to foods, drugs or other things in the environment. You can check our Treatment Page for a limited list of foods and drugs that are known to bother RLS.

I see no reason to change your Mirapex to Requip. The two drugs are very similar, but as with all drugs, some respond better to one or the other for reasons beyond our understanding.

Date: Saturday, June 05, 1999 3:43 AM
Subject: Mirapex and Restoril for RLS

I have recently been changed from Sinemet and Klonopin to Mirapex and Restoril. What a relief during the day! I have some questions about my new medications. I only take the Mirapex before bedtime, 3 tablets (0.125 mg) and 1 tablet of Restoril (15 mg) Should it take approximately an hour before the medication takes effect? Should it be taken on an empty stomach?

From reading some of your letters I'm wondering if the medication should be spread out more instead of 3 at one time. I still have a terrible time getting to sleep but my legs are fairly calm. Also could Mirapex cause my legs to swell? I've had two calls in to my neurologist this week to answer these questions and I am yet to hear from him.

You have a very informative site, keep it up for all RLS sufferers.

Thank you.
Virginia

Medical Reply

Mirapex should be taken about 30 to 60 minutes before it is needed to be active as it takes about that long to be active. If you do not have problems before bedtime, then there is no reason to spread out the dosing of Mirapex. That is only done for people with daytime RLS problems. As far as the amount of Mirapex (in your case, three of the .125 mg tablets), all you need is the smallest dose that resolves the RLS feelings at bedtime. You can try 2 1/2 tablets then 2 tablets and see if it makes a difference.

As you state that your legs are calm at bedtime with your current Mirapex dose, the problem falling asleep may be more due to simple insomnia than RLS. Restoril often takes 45-60 minutes to work, so it is not the best drug for someone who want to get to sleep quickly. Xanax or Ambien are better choices. As you are not really using these sedatives for RLS, try to use them only 3 to 4 times per week, so that you do not get tolerant of them or become dependant on sedatives.

Mirapex is not known to cause leg swelling.

Date: Monday, June 07, 1999 7:03 AM
Subject: Re: Timing of Requip for RLS (see previous letter this page, May 31, 1999)

One last question re Requip: I've been taking it as follows--( .25mg each pill) 1 1/2 in the am, 1 mid-afternoon and 2 at night, close to bedtime. Each interval is at least 6-7 hours. Does this make sense?

I have little problem w/ RLS till late afternoon, but rarely then. My main difficulty is at night when trying to fall asleep and also waking up during the night wide awake around 2-4 am.

So far, after one month, Requip seems to be a great drug for me, considering all the others I have tried. The quality of the sleep I do get is much better.

Thanks,
Anne G.

Medical Reply

If you did not have trouble with RLS without Requip in the daytime, then it is likely that you do not need it at that time. Most RLS sufferers use Requip before bedtime and a smaller dose before sitting down for the evening (if that is a problem time for RLS). In general, only use Requip for RLS symptoms and use it in the smallest dose that takes care of the symptoms.

Date: Monday, June 07, 1999 8:38 PM
Subject: Describe the Restless Feeling

Just a thought that I recently came up with (I've had RLS my entire life) and wanted to share with all of you fellow sufferers. When someone asks me to describe how RLS feels I tell them it's like when you feel a shiver coming on (you know, when they say "someone is walking over your grave") and if you could freeze it in "mid-shiver" and be stuck with that feeling: that's how it feels.

My RLS is is almost total body. My symptoms are from around 4 p.m. to 4 a.m., almost a perfect 12 hours. If I don't take anything to help at night, I will be battling it until about the time the birds start to chirp ! (dumb birds!)

I have tried almost EVERYTHING ever suggested to ease symptoms. My best results are with the painkiller family of medications which doesn't thrill me too much, but I get a good night's sleep. Oxycodone every three nights and Ultram in between.

Everyone has different things that work for them. It seems like no two cases of RLS are the same. Good luck to all of you and thank you for this great website and the research that is being done.

Medical Reply

Thanks for your description of RLS. You are right that every RLS patient is quite different.

DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.