Patient letters on RLS symptoms and remedies- Page 23


Kicking RLS/PLMD Patient

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



Sent: Wednesday, October 06, 1999 6:30 PM
Subject: RLS and Sinemet

My doctor had me on Elavil for about a month and my symptoms got worse. I stopped taking it. Today I had another scheduled appointment and after telling him of my sleep problems, he wants me to try Sinemet. After what I have been reading on this web site I was rather reluctant to try. He said he had good results with it. Before buying the prescription, I read where there was a warning for people who have had melanoma, not to use it. Being late in the day, my physician had left the office. I am wondering if any of the newer drugs like Mirapex and Requip also have the same warning????????

Medical Reply

It is true that Sinemet should not be given to people with a history of melanoma or with skin abnormalities suspicious for melanoma, as it can activate the cancer. Aside from that, we rarely use Sinemet for RLS these days due to the problems with augmentation and rebound which can occur in up to 85% of patients. Mirapex or Requip work much better with fewer chances of problems. You should not accept anything less.

There is no literature that I could find about Mirapex or Requip and melanoma.

Check out our list of medications that you should avoid (which includes Elavil) on our RLS Treatment Page .

Sent: Wednesday, October 06, 1999 10:29 PM
Subject: RLS/Colon cancer

I was most grateful to you for your speedy reply to my E-mail of August 25 concerning my bout with colon cancer and continuing problems with RLS. I am pleased to report that I have now been taking Mirapex for just over four weeks with the most dramatic improvement. I am staying mostly quite comfortable with 0.125 mg a little before bedtime and have found now that quite frequently I can dispense with the mid afternoon dose.

That somewhat seems to depend on how tired I am and what I eat for lunch. A sweet dessert, wine or coffee, even decaff, seem to increase the symptoms. My doctor was not willing to change to Xanax or Ambien as he seemed to feel there was a greater chance of dependency, so I am still taking Klonopin, though there again I have been able to cut back to half a tablet most night (.25mg.) and though I do wake up quite frequently my legs are at rest and I read for a while until I go back to sleep. With this dosage I do not feel tired the following day.

I have a follow-up appointment in four months and at that time I plan on trying him again for either Xanax or Ambien. I felt that my victory with Mirapex was sufficient at one time. As you expected he knew nothing about this medication for RLS, but he is an interested caring physician and is always willing to listen.For my part I am once again able to relax with a good book, watch a movie, nap in the afternoon, and even just lie in a chaise lounge and enjoy the sun, pleasures I have missed for the last couple of years.

I am almost 70 years old and had resigned myself to living with RLS for the rest of my years, so I shall be forever grateful to you.


Medical Reply

It is very gratifying to hear that you are doing well with Mirapex. The next issue is about your bedtime sedative. If your RLS symptoms are taken care of by Mirapex, then you are clearly not using the Klonopin for RLS related insomnia. As such, you should not be using it on a regular basis or tolerance is quite likely.

Although you have "an interested caring physician and is always willing to listen" you should never have to consider the outcome of a visit to your doctor as a "victory" because you received one correct drug and another incorrect one. It is unfortunate that very little (if any) time is spent in medical school on sleep disorders, which results in most doctors not understanding how to treat sleep problems.

Klonopin is not less addicting than Xanax and is most definitely many times more addicting than Ambien (which so far has not had a single case reported in the literature of addiction). In addition, after regular usage, a drug holiday of at least 5-7 days is needed for Klonopin, compared with just 2 days for Xanax or Ambien. Sleep specialists who are experts in RLS rarely use Klonopin (I NEVER prescribe it), but do use Ambien and short acting benzodiazepines regularly.

Although physicians feel comfortable prescribing drugs that they are have more experience with, they still need to prescribe the best drug for each medical condition. You should never leave your doctor's office unsure that you are getting the best treatment. If your doctor makes statements that do not make sense or that you do not agree with, simply bring in literature (there are tons of it available on the net these days) and make him prove to you that his plan is better.

Sent: Friday, October 08, 1999 6:37 AM
Subject: Medication, results and side-effect

My severe RLS situation has much improved since I have contacted you the last time. Nevertheless something bothers me, and I would much appreciate your comment regarding (1) the medication, especially because I noticed in your answers in the letters your obvious preference for Mirapex, and (2) the side-effect.

Up till about 3 month ago, my medication was as follows:

1.00 p.m., 1 Requip 0.25
6.30 p.m., 1 Requip 0.25
11.30 p.m., 2 Requip 0.25 + every other day 2 Rivotril 0.5
3.30 am (!), 1 Requip 0.25 I still required 2 hot-showers: 1 before sleeping and 1 in the middle of the night.

The total effect was not very good: RLS was still present in the afternoon, the evening and at awakening during the night.

The new medication, with substantially improved results, is:

1.30 p.m., 1 Requip 0.25
6.30 p.m., 1 Requip 0.25
10.30(*) p.m., 3 Permax 0.25 ...(*)the exact moment is 1˝ hour before sleeping (the amount 3 has been obtained gradually)

Every other day, directly before sleeping, 2 Rivotril 0.5 I only need 1 hot-shower, directly before sleeping. The total effect is now very satisfactory, there are days that no RLS problems occur at all, but the general picture is being troubled because the Permax causes severe stomach ache in the evening. I tried to suppress that by taking 1 Pantozol 40 (pantoprazol-natrium-sesquihydraat), 1 hour before dinner, but that only helps a bit.

Have you any suggestions?

Thanking you again for your attention to my case and for your comments, very truly yours,

Henny S.-K.,

Medical Reply

I do like to treat RLS with Mirapex, but Requip is probably as good and very similar in most ways. I do have a few suggestions.

I generally do not like using clonazepam (Rivotril) for RLS. It is a very long lasting medication and tolerance and addiction can occur easily, not to mention daytime sleepiness. Unlike Xanax or Ambien, drug holidays from clonazepam must be at least 5-7 days. Changing to Xanax or Ambien and taking regular drug holidays of 2 days off every 2 weeks may or may not improve your situation and nighttime sleep.

I am not sure why you are taking Permax. It works similarly to Requip but with significantly more side effects (especially in your case). If you are really taking 3 of the .25 mg tablets at once, then that is a terrifically high dose and should be avoided. You may want to substitute a more moderate dose of Requip instead.

Sent: Friday, October 08, 1999 11:52 AM
Subject: Baclofen for RLS?

I have been taking 20 mg Baclofen just before retiring for two years now after suffering RLS for 50 years. While this course works for me I am curious as to the prolonged effects both now and to the future if I continue. Do you have any advice?

Ged A.

Medical Reply

Baclofen is a muscle relaxant that is used in MS patients. It is generally not one of the more successful RLS medications. If it is working without causing any problems, you should not really have any long term side effects.

If it does become less effective, consider some of the more mainstream RLS treatments.

Sent: Friday, October 08, 1999 12:07 PM
Subject: Serzone for RLS

Hi, are you aware Serzone having any positive or negative effects on RLS?

Mary in Pennsylvania

Medical Reply

This medication may have a slight increase in positive effects on RLS compared with negative or no effects.

Sent: Saturday, October 09, 1999 2:29 PM
Subject: Long term use of Neurontin

A friend of mine from Syria who is in this visiting me,  informed me that he has been diagnosed with RLS. He is taking 400 mg of Neurontin (Gabapentin) daily, and is having some success with it. This medication is not available in Syria. Consequently, he imports it from Italy.

His questions are the following:

1: Can he take this medication forever (are there serious side effects?)
2: Are there better medications?

Ara K.

Medical Reply

Neurontin is a fairly safe medication and helps a moderate number of RLS sufferers. It does not have long term side effects and if he is tolerating it well (no sleepiness or other side effects), then there should be no problems.

Mirapex and Requip tend to work better in that they resolve the RLS symptoms better, have less side effects and help a higher percentage of RLS patients than any of the other RLS medications.

Sent: Sunday, October 10, 1999 8:03 PM
Subject: State disability RLS?

Very interesting web pages. Question: Can a person with RLS get state disability? I have been battling this for years never knowing what it was until it got so bad I went to Sansum Clinic in Santa Barbara and they knew right away what it was.

I have been on medication for about 7 years. It helps and it doesn't help. I am using Elavil and Parlodel. But now I find out that Elavil can raise optic pressure. and I found out that I could have the start of glaucoma, which I fear Elavil is not helping. I have tried Sinemet but it didn't agree with me.

I take the RLS newsletter which I find is helpful. Well If anyone knows of any disability I could get It would be appreciated.

Thanks for hearing me out,
Joyce S

Medical Reply

I am not sure why you are on Elavil (for depression or for RLS?), but it usually causes RLS to worsen rather than improve. Even though you tried Sinemet and had trouble, you likely would do better with Mirapex or Requip (different side effect profile). Parlodel is not a bad medication, but generally not as good as Mirapex or Requip. If your RLS is not under control, you should consider changing to Mirapex or Requip.

As far as disability, any medical disorder that renders one incapable of working would qualify the person for disability. RLS rarely does this for a few reasons. It tends to be worse in the evening, which for most is after work is done. RLS gets better with activity, so unless you have to work sitting, work generally helps RLS. The treatment for RLS has improved enough (especially with the newer medications) that very few RLS sufferers should end up disabled.

Sent: Tuesday, October 12, 1999 12:46 AM
Subject: Ultram for RLS

Symptoms: That wormy, crawling feeling inside my arms and legs, which seems to start at my hips and shoulders. I've pounded my head against the floor in frustration to distract myself and often slept all night in an extremely hot bathtub to get rid of the feeling. It used to be only at night, but has progressed to all the time.

I've tried MANY different medications, and the only non-narcotic medicine that works without turning me into a zombie the next day is Ultram. It's wonderful.

Heather M.M.

Medical Reply

Ultram works very well for many RLS sufferers. You should take regular drug holidays of 2 days off every 2 weeks to assure that you don't get tolerant of the medication. Have you tried Mirapex or Requip yet?

A Reply from Heather

No, I haven't tried either one of those yet, but I will mention them at my doctor's appt on Friday. I've been on Ultram (and other things) pretty steadily for about 3 years for severe back pain, but just got that fused, so I've been looking for something less addictive.

Thanks again. I'll let you know if it works,
Heather M.M.

Sent: Tuesday, October 12, 1999 7:46 AM
Subject: Mirapex causing side effects? (see previous letters 8/17/99 and 9/13/99)

I have written to this wonderful site before and really appreciate the excellent information I receive.

I am experiencing some difficulty with my Mirapex which I have been taking since June. I take the 0.25 mg. tablet- 2 at bedtime and have had some success with my RLS. As I am not taking any other medication, I feel that the Mirapex is causing severe pain in my calves, feet and hands. The pain is strong enough to wake me and keep me awake until I get out of bed and take a pain killer. Should I consider coming off the Mirapex and if so how should I be weaned off the drug?? If so, which one should I try next?

Thanks for your excellent information and for the speed in which you answer the letters you receive. God Bless you for your help.

Rosemarie in Saskatoon, Sk. Canada

Medical Reply

It is difficult to say whether or not the Mirapex is causing your leg pain, although there is a reasonable probability that it could be the source of your new problem. My recommendation would be to decrease your bedtime dose of Requip by half of a .25 mg tablet every few days while adding a pain killer (Ultram, Vicodin or codeine preparation) at bedtime.

If this does not help, consider a change to Permax or Requip instead of Mirapex.

Sent: Wednesday, October 13, 1999 10:44 AM
Subject: Problems with Mirapex (see 8/8/99 and 8/18/99 for previous letters)

I have written you before. But I am having something new happening! It feels like every inch of my legs from the top to the bottom, muscles get into knots and ache all the time. I am woken up by this and it even bothers me during the day. My joints ache as well. I am having more episodes.

It also seems like the medications are not lasting as long as they were. I have to take more during the day. I am taking Mirapex during the day and I take non aspirin with it because it gives me headaches. I take Klonopin and Sinemet CR at bedtime. All of the episodes stopped for about two weeks then it came back twice as bad. I also have put on weight here lately. I have other medical problems which I have to be careful what I eat.

I have had RLS AND PLMD for 5 years. I have seen specialists and now I go to a doctor who first found that I had these and began treating me. We have tried everything! Any thing new out there yet? Thanks for answering my e-mails. And good luck to everyone out there that has these disorders. I feel for you!

Linda from Crescent City.

Medical Reply

I am not sure what exactly is causing your new complaints. They may have nothing to do with RLS. If you are taking more than Sinemet than 50/200 at bedtime, then you may want to consider changing this to another Parkinson's disease medication.

To see whether the Mirapex is causing trouble, see if you can stop it for about a week, then restart it. If the symptoms come and go, then they are obviously related to the Mirapex. If you absolutely can't stop Mirapex, consider using Requip or Permax instead.

Sent: Wednesday, October 13, 1999 9:31 PM
Subject: RLS and no nore Klonopin

I have had RLS for some time and my previous doctor treated me with Klonopin and it worked well at .5 mg. I changed doctors and she had me on 1 mg. I have been on the meds. for 1 1/2 years. I don't think she believes in this disorder because I called to refill the Klonopin today and she did not refill it.

I am on managed care and will have to wait until November 1st to get a new doctor. In the meantime I suppose I have to suffer. As it is, I had a very severe accident 2 months ago and broke one of the vertebrae as well as herniation of one of the discs. The RLS got worse. Since I will be sleep deprived, I am frightened that my daytime sleepiness will be very severe. It was before I went on the medication.

Do you folks have any suggestion? Also, she said it was no problem to just go off the Klonopin cold turkey. Is that true?

Laura D.

Medical Reply

Klonopin may be alright for some RLS patients, but as it often causes daytime sleepiness and needs long drug holidays (5-7 days) is not used much by most RLS specialists. Like all benzodiazepines after long term use, it should be tapered off slowly to avoid withdrawal problems (such as seizures). Ambien (tough to get with managed care) or Xanax work much better but remember to take regular drug holidays of 2 days off the drug every 2 weeks.

Mirapex or Requip (also tough to get with managed care) very often do wonders for RLS, and may even avoid your need for any of the above nighttime sedatives.

You should not hesitate to seek immediate medical care for your RLS whether or not your doctor believes this disease exists or not. Daytime sleepiness can result in significant medical problems including death from motor vehicle accidents. Would you delay seeing a doctor if you had a life threatening heart condition that needed immediate treatment? No health plan can deny you immediate access to a physician who is capable of giving you the prompt care you need for your RLS condition. You MUST INSIST on getting this medical attention right away and inform your health plan that they will be held legally responsible if this care is not given.

Sent: Friday, October 15, 1999 1:45 AM Subject:
Subject: Chlordiazepoxide/Bromazepam, Clonazepam, Ropinirole and PLMD

At first my compliments with your very informative site, it has been of great help to me.

At the end of 1990 (when I was 40 years old) I was diagnosed with PLMD. In the years 1991-1995 10 mg to 20 mg I took chlordiazepoxide (Librium) taken nearly every day at bedtime (normally 10 p.m.), which relieved my sleep problems well. So did Bromazepam (Lexotanil) in the period 1995/97 (3 sometimes 6 mg at bedtime). I never had problems of sleepiness during daytime with both drugs. Apparently my body metabolizes benzodiazepines very fast. Sometimes I took drug-holidays (`cold turkey') of about one to three weeks.

After1'st day: 1 mg Clonazepam (Rivotril) in combination with 0.5 mg Ropinirole (Requip) at bedtime. 2'nd day: 0.25 mg Requip at supper (6.00 p.m.) and 0.5 mg Requip at bedtime. This medication worked very well on the average: I functioned reasonably well during the day after the combination of Rivotril and Requip, while the day after just Requip I felt (very) tired, sleepy and had an `ugly feeling' in my calves the whole day. Astonishing but true: the day after Rivotril I always have been less sleepy than the other day. To get asleep has never been a problem in my life, after half an hour reading in bed I fall sleep.

During last summer the twitching got worse. Before I only had (consciously) twitching in the late-afternoon and evening, since last summer I had it sometimes during the day too. Medication was augmented slowly to 1 mg Requip (0.5 mg at supper and 0.5 mg at bedtime) in combination with 1 mg Rivotril (at bedtime) the first day and 1 mg Requip (0.5 mg at supper and 0.5 mg at bedtime) the second day. The `ugly feeling' in my calves during daytime disappeared, but the night after taking just Requip, I always awaken.

My questions are:
1) What may be the cause of my awakening at 1 am after just taking Requip and why quality of sleep is so light that night?
2) Would a switch from Rivotril to Librium, to Xanax or to Lexotanil be helpful in my case? If so, can I switch at once and what is the corresponding dose to 1 mg Rivotril I take in two days, and what scheme of taking the medicine is the best? In general I have no complaints at all of Requip, I think it is the best regular medication for my PLMD.

Thanks in advance for an answer/advise on this long story.

Yours sincerely,
Toon t.H. Eindhoven

Medical Reply

Your problem may be that the Requip does not completely abolish the PLMD, but just decreases it. If so, then the addition of a sedative may help you not have arousals from the PLMD (sedatives do not always stop the PLMD, but keep your sleep deeper while they occur). This may be part of the problem with not sleeping well when not taking the clonazepam and thus being tired the day that you do not take it.

If that is the case, then Xanax would be a good choice as it has a short half life. You could also take short drug holidays of one weekend off Xanax every two weeks to assure that you do not become tolerant of the drug. The dose of Xanax that is similar to clonazepam 1 mg is about 0.5 - 1 mg, but I would still recommend trying the lowest dose that will work. Librium is not as good as Xanax, and I am not familiar with bormazepam as it is not available in the USA.

If you have PLMD and not RLS, why did your doctor suggest taking a dose of Requip at 6 p.m.? This drug is only needed for PLMD right before bedtime and that is when the total dose should be given.

Sent: Saturday, October 16, 1999 10:52 AM
Subject: Treatments for RLS/PLMD

First of all, thank you again for the wonderful information you are providing, both in your Treatment Page and via you individual responses. As I have been rereading your updated version of the former, several basic questions come to mind:

1. You state that the sedative group should be the first line of approach. In view of the fact that the anti-Parkinson's group work directly to augment what the dopamine normally does, whereas the sedatives (and narcotics, etc.) act primarily as "Band-Aids", why not recommend Mirapex (for example) even for mild cases? I suspect that cost may be your answer but is there any other? Those of us seniors who have secondary insurance coverage for drugs (especially if that coverage works through mail order pharmacies @ only $5-10 per order) do not find cost differences to be that significant.

2. Both the sedatives (other than Ambien and the new Sonata), and the narcotics are addictive. Is that not another reason for steering clear of them? And, if there is good reason for using one of these classes, shouldn't Ambien be the first recommendation rather than your preferred Xanax? Likewise, Ultram in the pain killer group..

3. Again, if there is good reason for not starting out with an anti-Parkinson's drug, what are the basic reasons for choosing a narcotic rather than a sedative?.

4. You give a warning about "sleep attacks" when taking roughly 1.5 mg of Mirapex, which is certainly good advice. Has this only been observed with Mirapex or can it occur with elevated dosages of Permax, or Requip, etc.? 5. I gather that, as a general rule, many of the bad side effects of most any drug can be avoided if the dosage is kept low. Which is why it is always stated that one should start out at very low dosages and increase slowly to the very least that works. Seemingly even Klonopin can be tolerated over long periods if the dosage is kept low (although the Central Florida group cautions about even the lowest dosages). Again, why use these medications at all?.

6. Finally, there is little or no mention in your Treatment Pages about combining any medications e.g. (in my case) Mirapex plus Neurontin to improve my sleep pattern. .

I am asking all these "education" questions since I am helping the facilitators of our Portland (OR) RLS Support Group put together an advisory program for our members. Your information is invaluable but the above questions stick out. Incidentally, we have produced a questionnaire for our members, asking basic questions that relate to what they are taking, what degree of success, and what they have tried unsuccessfully. Out of a mailing list of 110, we have received 60 replies! These are very informative. For your information, the greatest success has been with Mirapex. Many others are unhappy with what they have been given, and many cry out for help. I would like to think that we can give them some thoughts to take to their doctors.

Thanks again for your excellent information.

Newt in Oregon.

Medical Reply

You have asked many good questions and I will attempt to answer them one at a time.

1) My reason for not recommending Mirapex for mild RLS has nothing to do with cost (in fact, I rarely take that into consideration except for complete lack of coverage for medications which insurance companies do not think should be used for RLS). Mild cases do not have RLS every day and as such need only an intermittent medication. If the patient is being bothered only occasionally or up to a few days per week, why take a medication every day? Many patients also find exercises and other techniques that help them avoid the need for medication often. When these tricks fail in a mild RLS sufferer, then they can use a sedative on as needed basis. When the mild RLS becomes worse and the patient needs a sedative several nights per week to get to sleep, then I strongly recommend using Mirapex.

2) Ambien works well for mild to moderate RLS in general. Xanax if used in low dose with regular drug holidays works as well as Ambien and there is a very minimal chance of tolerance. Many drug plans do not cover Ambien (don't even mention the new Sonata!) so I often suggest Xanax as I know they will be able to get it. It is very often tough enough for an RLS patient to get any appropriate medication at all, so I want to make their work easier after they finally get a doctor to write RLS medication. In the more severe cases, Xanax may work better, although the response of RLS sufferers can be extremely variable to any of the recommended medications.

Ultram is probably the safest of the pain killers, however in my practice (where I see the difficult, severe cases) it is often not as effective as the narcotics. I do have even severe cases that respond better to Ultram, but the rule is that the narcotics calm the RLS symptoms better than does Ultram. If Ultram does work, I do prefer using it.

3) If Parkinson's disease drugs cannot be used then I will decide on sedatives or narcotics based on the patient's RLS problems. For bedtime RLS, a sedative generally works well. For daytime RLS when sedation is a problem, pain killers work better. It is not unusual to have patients alternate between these 2 classes of drugs so that they to not become tolerant of either one.

4) So far, I have only heard of sleep attacks with Mirapex, not with the other dopamine agonists, Requip and Permax.

5) If you mean, why use Klonopin at all, then my answer is that I never prescribe Klonopin (except when a patient has been on it for years, is doing well with it and does not want to stop it). Many doctors who are not familiar with RLS will look up the treatment in a reference text (which is a few years out of date even when first published) and see Klonopin and Sinemet listed as the drugs of choice, which is why they are still prescribed so often for RLS.

6) I do write on my web page that the various medications can be used together, but doing so requires a fair amount of expertise. It is quite complicated to describe how and when to add or subtract the different RLS medications, and in fact I do this on an individual basis tailored to the needs of each patient.

Sent: Saturday, October 16, 1999 4:40 AM
Subject: Oxazepam

After successfully weaning himself from oxazepam (Serax) last month, my aged father is growing weary of experimenting with substitute remedies: Ambien, Sinemet, and an herbal combination of Kava, valerian, and hops have helped very little. Now that his central nervous system has been stabilized, would it be counterproductive for him to return to a low dose of oxazepam, which worked well for him for fully ten years before it started to produce daytime drowsiness and fatigue?

J. G.

Medical Reply

He can go back on oxazepam, but should either use it only intermittently (only 3-4 days per week, trying to take it alternate days if possible) or take regular drug holidays (longer than 2 days and more often). If he has not tried Mirapex or Requip yet, these may work well enough so that he may reduce or eliminate his need for sedative medication.

Sent: Monday, October 18, 1999 4:56 PM
Subject: Course of RLS with aging?

My name is Tali and I'm a 17 years old girl from Israel. For about 5 years now I'm having troubles going to sleep and staying that asleep. I feel like my legs have to move and lately I have a pain in my legs if I don't get up and start to move.

After I read your Web Pages I felt like many of the people who wrote to you were having the same exact things that I have. The thing that scared me the most was that  you say that it will become stronger and will get worse with the years. My question is, if there were any cases in which the illness disappeared after some years ?

And if you have any treatments that were proven as effective to lower the pain and the RLS, other than medications ?

Medical Reply

It does sound like you have RLS. This disorder does get worse with age, for most patients. There are a small percentage of RLS sufferers who may go into complete remission for no reason that anyone can figure out, and have the disease leave them forever. Most get slowly worse over the years.

There are not a lot of treatments that work consistently, other than medication. You can check our web pages for non-medication treatments that might work for you.

Sent: Monday, October 18, 1999 9:26 AM
Subject: Medication Question?

I am in the exploratory phase of finding the best medication therapy. I have only had RLS symptoms for about two years, but like anyone else, it's been a sleepless two years.

I have had good relief for the past six months with Sinemet 50-200. I was successful using 1-1/2 tablets an hour before bedtime. However, it has been increasing difficult to deal with the side effect profile of: mood swings, depression, etc. As of yesterday, my doctor switched me to Neurontin 100 mg. He prescribed one tablet twice a day. I just started this regime yesterday and experienced absolutely no relief, and was up all night with symptoms greater than I've experienced before. In response to this, I even tried increasing the dosage to 3 tabs, 300 mg. with still no relief.

Question: Is this due to the change in medication class? Is this just a transition that I need to go through? Should the dosage be increased? If anyone has experienced similar challenges, I would really appreciate their recommendations/comments.

My sincerest thanks,
Randy L.,
Boise, Idaho

Medical Reply

It is a good thing that you stopped Sinemet, as you may already have been experiencing some augmentation and rebound. Do not use Sinemet again!

Neurontin does a good job for many RLS sufferers, but most need between 200 and 400 mg to get relief. If that dose does not help, then it likely does not help you. Mirapex or Requip are the best drugs for now. Speak to your doctor about starting one of these drugs according to the details on our web site Treatment Page.

Sent: Monday, October 18, 1999 12:33 PM
Subject: Tickling to relieve RLS

I have suffered RLS for around 15 years my older brother also suffers and has done for about the same length of time. Further my father has suffered for what must be worse than a life's prison sentence of a grand total of 40 years. Interestingly I have another brother, older than me but younger than the brother who suffers RLS who does not suffer at all.

I tend to suffer mainly in my left leg although I do get less annoying pain in my right leg. I take no medication for relief and find only way to ease the dreaded problem is by exercise and stretching the calf muscles.

The only other way I find instant relief is by....."this may sound really funny" but for me its a 100% winner, and that is to get my wife to tickle my feet?? Don't laugh, I'm being serious. The only problem is my good wife gets sick of me asking. Further, I think I'm becoming addicted to having my feet tickled as it seems to take my mind off the problem almost straight away as the tickling sensation drowns out that nightmare restless leg feeling. It's instant relief for me but certainly no cure. I know some of this letter may sound a bit of a joke! but its the truth.

Try it for yourself........... after all, there's nothing to loose.

David B.

Sent: Monday, October 18, 1999 11:19 AM
Subject: Leg wrapping for RLS

I read you excellent and comprehensive web page for the California support group of RLS. My wife has had the creepy crawly condition for possible eight years and has attended some support groups at which medications were extolled in one meeting, and disposed of by a patient before the next meeting. We have literally gone at the problem on our own and so far feel that we have reduced the condition to virtual elimination.

To paraphrase Dr David B.Rye in the recent (August) edition of Night Walkers "While it quickly became apparent that this was a common disorder that responded fairly well to dopamine agents, I was struck by the relative ignorance of the medical field to its recognition and treatment" which we would .."to the recognition that there may be alternative treatments that do not use drugs!"

Check the medical advisory boards for this problem and they consistently refuse to even consider anything other than drug.....even Tylenol in sufficient dosage would give some relief but is certainly not recommended. It is however too easy to prescribe the dopamines, Sinemets and opiates!

My wife originally wrapped her legs in a heavy "ACE" sports wrap about 8 inches wide and approximately 20 inches effective wrap length not including the Velcro clasp. Combined with natural vitamin program she receive relief for many years. A year ago, she was to have a foot operation and at the time the doctor also inserted a magnet into the cast to reduce the pain. For almost twenty years now there have been a random number of magnets in each of our beds (under the mattress cover) to effectively eliminate the harsh leg cramps she used to suffer with. We decided along with other literature to investigate if magnets would help the RLS, and last October we documented our limited research. She now has a elasticized stock which contains three 1" strip magnets about eight inches in length vertical around each leg. The stocking has been through many adaptations, but now is a wrap with a length of Velcro as a closure. Virtually total relief.

We sent this information to the RLS foundation and indicated the excellent results that we were getting. That was after five months from the early stages. It is now over a year and still effective. The RLS Foundation however only acknowledged the letter but have seen fit not to pass the information on in their publication.

In the interim, We did have contact through a "Radio Talk Show" with several people who contacted us. Many of them were appreciative of the information and have utilized it with some success.

The application may not be acceptable to the medical profession but it certainly is to those who have received some relief!

Regards to all,
David and Gloria B.

Medical Reply

Leg wrapping works for some RLS patients and you will see several letters extolling the virtues on wrapping one or more limbs on our web site. Disseminating information like yours is one of the main purposes of this web site. If it helped your wife, it may certainly help others.

We do have a list of many non-medication and even non-conventional treatments for RLS catalogued on our RLS Treatment Page for others to look over. The problem is that most of those therapies (including leg wrapping) seem to help only a very small minority of RLS sufferers.

That is why most medical doctors resort to advising medication treatment. Even plain Tylenol (in very high doses) gives almost no relief to most moderate to severe RLS sufferers. Believe or not, most physicians hate prescribing sedatives and pain killers, especially for RLS. Many also do no like to prescribe Mirapex and Requip due to lack of knowledge on how to use these new drugs. The drugs do work quite well in a very large percentage of the moderate to severe RLS sufferers, which is why we doctors "like" to prescribe them. Even if we cannot understand the cause of the disorder, at least we can bring significant relief to the suffering of most RLS patients.

Sent: Wednesday, October 20, 1999 2:06 PM
Subject: Restless Legs and Chicken Pox

I work with Web pages, so I have had plenty of opportunity to read up on just about everything there is on Restless Legs. Nowhere have I seen anything written about viruses or illness causing RLS, particularly the Chicken Pox. Yet, it appears that the Chicken Pox has given me RLS, or symptoms very similar to it.

The weird leg sensations started right after I recovered from the illness (I'm a 26-year old male). It mostly was a feeling that my body was electric, or extremely tense, even though mentally I wasn't stressed at all. After a while, it seemed to go away, but for the last couple of months, it has slowly gotten worse. Only this time, the symptoms are different. The prevailing feeling I have is a kind of burning, aching feeling deep in my thighs. I also sometimes get sudden body jerks that last less than a second.

The symptoms are prevalent most of the day, but seem to get somewhat worse at night. The interesting thing is, the symptoms are not that bad when I fall asleep, but seem to be worse when I either get up in the middle of the night or wake up early in the morning.

It is frustrating for me, as four months ago I never had any symptoms whatsoever, now I feel like I may have full fledged RLS. I have seen a Neurologist, who says I have RLS, but it is hard for me to accept, considering I'm a healthy person who does not smoke, drink alcohol or caffeine, nor has any family history of RLS.

Peter J.,

Medical Reply

There is nothing in the medical literature linking viruses and RLS. As the cause of RLS is totally unknown, we cannot say definitively that a virus (such as Chicken Pox) could not have caused your RLS, but if this was a common occurrence, most of us who deal with RLS would have heard of such a link by now. For example, trauma (such as surgery) to the spine will often trigger RLS, but we are not sure if that is just a trigger or an actual cause.

Unfortunately, not smoking, drinking or having caffeine and generally leading a healthy life gives you no advantage for not getting RLS. Most patients are healthy with no underlying medical problems found even on extensive examinations. About 50-60% of RLS sufferers have a family history of the disease, so you could easily be in the 40-50% who do not have a family history.

Have your neurologist prescribe Mirapex, and you should then be feeling much better.


A Reply from Peter J.

Sent: Monday, October 25, 1999 1:43 PM
Subject: RE: Chicken Pox and RLS

I have a couple of more questions. First, could there be some other cause to my RLS type symptoms resulting from the Chicken Pox? Before the illness in July, I had never had any symptoms of RLS. Now four months later, I have pretty significant symptoms. Also, two persistent qualities of my current condition are fasciculations over a great deal of my body, particularly in my calves.

Also, I'm having pretty persistent aching in my thighs. Are these consistent with RLS, or is something else going on? I'm trying to figure out the best course of action I should take.

Peter from Ohio

Medical Reply

The cause of RLS is still completely unknown so anything could have caused it. We believe that most people who have RLS have a genetic component causing the disease and then something comes along (possibly a stress to the body such as your adult Chicken Pox) and just triggers the onset of the disease. This is a common occurrence in such diseases such as asthma.

The problem with fasciculation is not very common with RLS, but the aching in the legs is a common complaint.

Sent: Wednesday, October 20, 1999 3:10 PM
Subject: PLMS?

Hi, Monday, my boyfriend kept me awake during the night with his body jerking every 10 seconds. It seemed that all quieted down before dawn and we got a couple of hours sleep. We have been living together for 3 years. He is 58 year old.

He complains of headaches often. He wakes up with them and sometimes they last three days to a week. This has been going on for years. I noticed that he was drinking a lot coffee each day, maybe 10-12 cups. He stopped about a year ago to see if it helped his headaches.

He often complains that he can't sleep. Last night I was awakened by him again, so I watched him. He would jerk every 40 seconds. Most of the time, it would be his left hand twisting towards the thumb. His right side did not seem to be involved. This movement did not wake him up but every once in a while, his entire arm would jerk sort of like a chicken dance. The arm was bent at the elbow and would raise up above his shoulder. This would awaken him and he would roll over.

He does not have the symptoms of Restless Leg Syndrome but I think he may have PLMS. Am I on the right track?

Linda E.,
Tujunga, CA.

Medical Reply

There is a good chance that he does have PLMD. The best thing for him to do is to get his doctor to send him for an overnight sleep study (nocturnal polysomnogram). It should quickly figure out what is happening and point to the current treatment for his problem.

Sent: Thursday, October 21, 1999 6:14 PM
Subject: Vicodin (see previous letter, Page 22, Oct. 6, 1999)

About your suggestion to take Vicodin instead of another dose of Requip in the middle of the night: I take 2 Vicodin( APAP 5/500) and this has been working well.

Is this too much Vicodin? I don't feel a hangover, never take more than 2 pills, but am concerned that I may be taking too big a dose.

Anne G.

Medical Reply

This is not really a big problem, especially if you do not take the Vicodin every day. If you do need the Vicodin every night, then try 1 1/2 tablets to see if a little less will do the job. If not, then you may want to change to Lortab, as it comes in a 10 mg hydrocodone dose combined with only 500 mg of acetaminophen (thus you get less of the acetominophen which you do not need for your RLS). You may also want to consider alternating with Ultram to help you use less hydrocodone.

If you take the narcotic medication they way I have described, you should have no problems.

Sent: Thursday, October 21, 1999 2:20 PM
Subject: Mirapex

I received your e-mail about Mirapex or Requip. I mentioned that I was on Neurontin 200mg. You suggested I take the Mirapex or Requip. There was a little debate about the effects of these two drugs on TV. Please advise on the effects of these two medicines. Thank you for your advice.

Tina H.

P.S. I really am at wits end.

Medical Reply

Neurontin works well for some, but not as consistently well as Mirapex or Requip. The side effects of Mirapex and Requip are generally minimal for most and they are very effective drugs for RLS.

There has been recent concerns about daytime sleepiness (such as when driving) with Mirapex, but this is at the Parkinson's disease dose of over 1.5 mg per day (equal to 12 of the .125 mg tablets, and most RLS sufferers need 1-5 of the .125 mg tablets). For a more complete listing of the drugs, check out our RLS Treatment Page .

Sent: Thursday, October 21, 1999 4:06 AM
Subject: Re: Medication, results and side-effect (see previous letter, Oct. 8, 1999)

Thank you for your answers to my questions of October 8 about my present medication.

However, I feel now somewhat uneasy about your statement that I have a "terrifically high dose of Permax and (it) should be avoided". The reason that I have asked my treating specialist to change from Requip to Permax, is because Requip did not lead to substantial relief. I first had 5 Requip 0.25 mg, distributed 1-1-2-1 over 24 hours, which was changed into 2 Requip 0.25 mg and 3 Permax 0.25 mg, distributed 1R-1R-3P over 24 hours. And as I have mentioned the positive result of this change is very, very, significant!

With respect to your above cited answer I am now wondering : 1. what are the differences in short- and longtime (side) effects between Requip and Permax, and 2. is there a higher 'risk' with Permax compared to Requip, and 3. Why are you advising "to avoid" the 3 0.25 mg Permax dose?

Sorry to bother you again, but I really am anxious to understand the background of your recommendations.

Thanks again, very truly yours,
Henny S.-K., Amsterdam

Medical Reply

Permax is generally used at .05 mg tablets for RLS. That is a similar dose compared to Mirapex .125 mg or Requip .25 mg. Most RLS sufferers use between 1-6 of the .05 mg Permax per day (although I have gone much higher when necessary). If you are using 3 of the .25 mg Permax tablets, then you are taking the equivalent of 15 of the .05 mg Permax per day. The 2 Requip .25 mg tablets are a small drop in the bucket compared to the Permax dose that you are taking.

The dose of Permax that you are taking is commonly used by Parkinson's disease patients who can do so without problems, so it is likely a safe thing to do. I think that if you changed some of the .25 mg Permax to .25 mg Requip (which is a more potent dopamine agonist than Permax, and remember, five .25 Requip = one .25 Permax) then you would be able to decrease the total amount of dopamine that you are taking.

It is difficult to say if you are at increased risk by taking so much Permax (for an RLS sufferer), but we find that the less medication that you use to do the job, the less likely it is that you will have trouble.

Sent: Saturday, October 23, 1999 9:10 AM
Subject: Ultram working well for RLS, but what to use for drug holiday?

I wrote to you last summer asking for advice because the Trazadone that I had been using for years was no longer helping. You suggested Ultram. I have been taking 2 each night, and have had great results. I still wake up a couple times during the night, but can usually go back to sleep. The difference is that my legs are usually more relaxed because there's no pain, and I feel comfortable. If there is some pain I will stretch my legs, read for a few minutes, and then am able to go back to sleep. I can't believe how good I feel.

I also have eliminated my nightly cocktail, and now have a glass of wine 3-4 times a week before dinner. I feel this has also helped. So, thanks so much.

I do take a holiday every 2 weeks. You suggested I use Tylenol with codeine or Ambien. I have tried both. The Tylenol makes me restless and seems to keep me awake, and with the Ambien I wake up in pain and then have trouble returning to sleep. Thus on those 2 nights I may get 3 hours of sleep each night, and needless to say, feel rotten for a couple days. I've thought of taking the Trazadone (2) which had once been effective to see if that would help. What do you think?? If you have other suggestions please let me know.

I really wanted to let you know how grateful I am to find Ultram. Thanks very much,
Sue H.

Medical Reply

If the trazadone helped before it is a reasonable alternative for the nights that you are on a drug holiday from Ultram. Vicodin is another choice instead of Tylenol with codeine if the trazadone does not help.

Sent: Sunday, October 24, 1999 3:09 PM
Subject: RLS meds

I have recently started taking 300 mg Neurontin at bedtime. I have suffered with RLS for years, and have now reached a point I need help on a nightly basis for sleep. In the past, I have used 5 mg Lorcet to treat these symptoms. It has been EXTREMELY helpful. I am more pleased with the Lorcet than I have thus far been with Neurontin.

I have also noticed, after 3 days of Neurontin, heavy bags under my eyes and swelling in my fingers and feet. I do not feel tired, but I look like I've been on a 4 day drunk. Could this be a possible side effect that my doc should know about? If I revert back to the Lorcet, is it safe to take on a nightly basis?


Medical Reply

This could be a side effect of Neurontin. Stop it for a few days (with the consent of your doctor) and if the new problems go away, then you know the Neurontin was the cause. Lorcet is hydrocodone (same as Vicodin) and if used every day does have some risk of tolerance and addiction. The way around this is to use the lowest dose needed and to take regular drug holidays of at least 2 days off every 2 weeks.

Ask your physician to prescribe Mirapex or Requip. With either of these drugs your RLS will likely improve enough so that you will rarely even need Lorcet. These drugs tend to work better than Neurontin and have less side effects.

A Reply from Karen

Sent: Monday, October 25, 1999 4:15 PM
Subject: Re: RLS meds

Thank you for your timely response. I need additional information before revisiting my doctor on Thursday. I originally chose to try the Neurontin because it appears to have the least side effects. I've been reading about Mirapex and Requip, and I am terribly bothered by the "sleepiness" problem. I am a Ph.D. student who works between 40 and 60 hours a week. I can not afford any degree of sleepiness. I am currently sleepy because of the lack of sleep caused by the RLS. It is the reason I am seeking treatment.

I tried benzodiazepines, and am quite certain I do NOT want to go down that road. I was so sleepy and foggy headed the next day. I stayed with it for a week and gave up in frustration. Anyway, if Mirapex is going to cause this same daytime sleepiness, I do not want to even try it. Will a higher dose of Neurontin help with the deep aching I also experience in my ankles and feet? OR only the urge to move will be relieved with Neurontin?

I wish to find the perfect medication or combination of medications to crawl into bed and relax. By the way, my husband and I have not slept in the same bed in over 5 years.I am desperate to feel "normal" again.


Medical Reply

Try Mirapex or Requip. I have yet to see problems with sleepiness with the doses used for RLS. If you are really concerned, try at least a test dose and see what it does (start with 1/2 of the smallest tablet). These 2 drugs have the greatest chance of doing what you want for your RLS and making you feel normal.

I have seen a lot more side effects from Neurontin than with Mirapex or Requip, and the Neurontin rarely works as well.

Sent: Friday, October 22, 1999 1:50 PM

It's been so long ago that I can't remember when my wife first complained about me kicking her at night. When I went to the doctor I had at the time, he didn't diagnose me as having RLS or PLMS, but gave me meprobamate to take as needed. I'm not sure if the medications worked as much as getting out of bed to take it did. Since my symptoms come and go, they eased off and I put it out of my mind. Years later I mentioned to my new doctor that I was again having kick-fests at night, and he mentioned the possibility of me having RLS.

Just recently I have begun to have fresh and stronger symptoms, so I started researching RLS on the Internet. I found that I had symptoms that I was unaware of. The things I was doing had become so commonplace to me that I gave them no thought. For example, although I do not have leg pain in the evening, if I sit with my legs up, I am constantly flexing my ankles and contracting my toes.

In bed, I sometimes wake up early in the sleep cycle because I have been kicking my legs. Now I am having involuntary arm movements as well. Many days now I am so sleepy that I can't sit at my desk without falling asleep, and I wonder if this is because my sleep is being disturbed. Sometimes I'll take a Benadryl because it helps me go to sleep quickly and sleep through the night, but I usually wake up tired.

I'm continuing my research and will soon approach my doctor for treatment. Not knowing how well educated he is on RLS, I plan to go in armed with the most info I can gather. I've read of so many drugs and treatments, I'm not sure what may be the best starting place for me. Can you make a suggestion, please? The only other medication I take is Allegra for hay fever.

Rick L.

Medical Reply

It sounds as if you have PLMD, not RLS (of if there is an RLS component it is extremely mild). PLMD is only treated if the leg movements cause enough arousals to result in significant daytime sleepiness. It is often necessary to get an overnight sleep study to document the severity of the PLMD related sleep arousal problem.

PLMD is often treated very effectively with Mirapex or Requip which are generally the first choice of therapy. Sleeping pills such as Ambien or Xanax (second choice) may help by mildly decreasing the PLMD's, but more so by preventing the arousals resulting from the leg movements.

Sent: Monday, October 25, 1999 4:40 PM Subject: RLS and Narcolepsy

I have had RLS for about 25 years. In the last 10 years it has become severe. I take 20 mg. of Oxycontin every night (one late afternoon and one about 9 PM). Oxycontin works well for my RLS but seems to stimulate me so I can't sleep. So about an hour before bed I take .75 mg. of Xanax. I was taking Ambien but began having hypnogogic reactions (felt like I was hearing voices), so I stopped the Ambien.

My doctor doesn't want to try me on Mirapex because it is such a new drug. For the last couple of years I've been having daytime episodes of overwhelming sleepiness. It isn't necessarily consistent all day long, so I haven't related it to the drugs from the night before. I have two questions.

Have you ever heard of anyone actually having both RLS and Narcolepsy? Or could the sleepiness be from the drugs I'm taking? The other question is about Mirapex. I once took Permax and both passed out and hit my head on the way to the bathroom, since I became severely nauseous. I have heard that Mirapex has similar side effects. Is that true?

Thank you,
June M.

Medical Reply

The sleepiness may be from the drugs, especially if you take them every day without drug holidays (2 days off each drug every 2 weeks - you can use alternating weekend with each drug to do this). It is also possible that you may have PLMD (over 85% of RLS patients have PLMD) which can cause nighttime arousals and result in daytime sleepiness. Only a sleep test would confirm this diagnosis. I have seen Narcolepsy (incidence of 1-10 per 100,000 people) and RLS together, but that is quite unusual and also needs a sleep study to prove.

Although it is often prudent to wait a bit before trying a brand new drug, Mirapex has been around for almost 2 years with lots of patients using it successfully for RLS. There have been at least 3 peer reviewed journal articles written about its effective use in RLS. Your doctor's reluctance may have more to do with his unfamiliarity with the medication and its dosing in RLS (refer him to our RLS Treatment Page),

Mirapex rarely causes nausea like Permax (which is one of the many reasons that it has supplanted Permax for RLS). Considering the heavy duty narcotics that you are taking, the risk of Mirapex is miniscule. The odds are that you would be able to reduce or even eliminate your narcotic medication once on the correct dose of Mirapex (or Requip).

Sent: Monday, October 25, 1999 10:54 AM
Subject: RLS

I can't believe that I have finally found a support group after all my years of feeling alone. I have had RLS since childhood, but never got up the nerve to speak with someone until about 6 tears ago. I tried Sinemet, but got very nauseous,then was put on Klonopin .5 mg at bedtime. The problem that I am now experiencing is I am currently up to 2mg every night and it doesn't always work.I'm afraid of becoming benzodiazepine dependent.  I also had a scare this past summer when another medication didn't work for a procedure because my threshold is so high.

This has also started to bother me during the day and I feel that I need to do something about this. Any Ideas?

Marilyn W.

Medical Reply

If you are already up to 2 mg of Klonopin (the maximum dose), then there is a good chance that you are becoming tolerant and are already addicted to this medication. You should get your doctor to start you on Mirapex or Requip, then when your RLS is under control, start to taper of off Klonopin slowly (under the supervision of your doctor).

If you have trouble sleeping while tapering of off Klonopin, Ambien can be used to help promote sleep.

Sent: Wednesday, October 27, 1999 8:12 AM
Subject: Stress causing RLS?

I have had RLS diagnosed in 1986 at a Sleep Clinic in Toledo. At the time they told me there was nothing I could do for it. I did try LEG-a-TRIM but it didn't help. My wife at the time was taking Tryptophan for MS and it worked pretty well. I tried it and it had pretty good results for me also. Unfortunately, it's no longer available.

I do believe RLS is stress related at least for me. My wife and I were divorced after 20 stressful years and I had a definite improvement in my RLS, I'm not suggesting divorce, just that stress seems to play a large part in the RLS condition. My RLS comes and goes now, as does my stress. I tend to be pretty anxious anyway and I think this has something to do with it but I'd rather be anxious than on drugs.

Physically, I do find that having my knees above my hips in a recliner makes the symptoms worse. Some chairs and car seats where I sit with my hips below my knees make it worse. I don't take anything for it, I've learned to deal with it and try to relax when I'm up in the night and find ways to enjoy the serenity of the night. I know that if I give in to the frustration of being up I'll just be up longer.

I saw many articles about antihistamines keeping people up for long hours. I am very sensitive to antihistamines also but I don't think it's related to RLS unless it has to do with us being rather light sleepers and the antihistamines pump us up just enough to be more aware of the RLS symptoms.

Tom H.

Medical Reply

Antihistamines, in patients without RLS, generally cause a side effect of sleepiness, except for about 10% of people who get anxiety/insomnia as a side effect. In RLS patients, the common reaction is worsening of RLS, which in turn is what keeps them awake.

Tryptophan is a precursor of serotonin and promotes sleep. It is thought that there is enough Tryptophan in milk, to help explain why a glass of warm milk before bed may help you sleep (as long as you do not have trouble with a hiatal hernia).

Sent: Wednesday, October 27, 1999 8:28 PM
Subject: Antidepressants and RLS

I am 62 years old and have had RLS for over 20 years. I was being treated with Neurontin and codeine but I am about to start Mirapex for this because my symptoms have gotten worse recently. I believe it is because I have been taking Prozac, which was prescribed by my Internist. My Neurologist thinks I should be on Remeron. I would like to know which antidepressant you think would be best in my situation and what do you think of Serzone or Trazadone?


Medical Reply

The SSRI type antidepressants (Prozac, Paxil, Zoloft, Effexor, Celexa, Serzone) may all help or worsen RLS. It is a very individual thing and impossible to predict. Often when you have not done well with one SSRI, you will not do well with the others (although even this is not necessarily consistent).

The new non-SSRI antidepressants Remeron and Wellbutrin often may help when the SSRI's do not. Trazadone can also be quite variable in helping or hindering RLS.

Sent: Thursday, October 28, 1999 6:10 PM
Subject: RLS Medical Question


BACKGROUND: I am 31 years old, and have had what I thought to be RLS for about 5 years, but now I am questioning whether I have this disorder or not. My symptoms began for no apparent reason - aching pain with restlessness in the evenings 3-4 times per week. Over the first two years it continually increased in severity and began to occur everyday and was no longer limited to the evenings. At present, I have severe aching in my legs, 24 hours a day, but little restlessness.

Over this 5 year period I saw doctor after doctor (mostly neurologists) and had MRI's, CT scans, X-rays, blood tests, electro-diagnostic testing, etc... with absolutely no progress toward finding the cause of my symptoms. Then one day three years ago I discovered this website and had the same reaction as many RLS sufferers upon discovering this website; I broke down into tears learning that there was a name for what I had and that I was not alone. At this point, I contacted and begin to be treated by a prominent RLS specialist.

Throughout the following two years I completed drug trials for several medications for RLS with at least one medication from each of the categories on your RLS treatment page (e.g. Neurontin, Tramadol, Elavil, anti-Parkinson's drugs, etc, etc...). The only medication class which offered any relief was the opiod class. So, over the years, I worked my way up the potency scale from Tylenol with Codeine 30 mg x 2/day up to slow release Morphine 100 mg x 3/day as the severity of my pain increased and my tolerance to opioids increased. I am now at the limit of what my body can handle. I have no other options, as other treatments have proved unsuccessful.

As you know, since RLS is a condition defined by its symptoms, rather than its causal mechanism, RLS, or what people perceive as RLS is actually a wide variety of problems, each with its own solution. Some people are helped by simply increasing low levels of iron in the blood, while others are helped by drugs like Neurontin. Then some people like myself are not helped by anything other than "pain killers." This leads me to wonder if I do not have what is typically called RLS.

The RLS specialist who I see, calls it "Atypical RLS." On one hand, my sleep study only shows minimal sleep disturbances, but on the other hand my pain is relieved by walking, massaging the legs and hot baths. I know that the variations of RLS people report are endless, but the fact that I have mostly severe pain and little restlessness, and do not respond to the typical medications for RLS:



My MRI's do not show anything pushing on my spinal cord, but I do have 2 very large hemangiomas in my thoracic spine, but they do not appear to be pushing on the spinal cord and the fact that they are near the thoracic spine and not the lumbar makes it less likely that they make be contributing to my leg pain. However, I am currently considering having vertebroplasty (filing in the hemangiomas with cement.) It seems to be a minimally invasive procedure and has a chance of helping me. My doctors don't know if it will help me, but they say that trying it is the only way to find out.


Any information/thoughts you can provide would be greatly appreciated and only used in conjunction with my doctors advice. I am desperate for relief.

Thank you very much!

Medical Reply

After seeing and treating many, many RLS patients, I can say that there is no typical RLS patient, so it would be hard to define atypical RLS. I do have some patients who do not have the restlessness (the urge to move their legs). Do you get relief when you do move your legs?

All narcotics act on the same receptors, so when you start increasing from lower potency to higher potency narcotics it often means that you are actually getting tolerant to the medication. Have you been taking regular drug holidays from your narcotic medications? Often getting off the medication that you are tolerant of for a week or two may re-establish the medication's potency.

I have a lot of severe RLS patients who do not respond to the Parkinson's disease drugs. Have you tried Mirapex or Requip yet which are the two best of these drugs?

There is no literature linking spinal hemangiomas and RLS. Spinal trauma or surgery can often trigger RLS, so there is a possibility that surgery could even make your RLS worse (if that is possible).

A Reply from Brian H.

Sent: Friday, October 29, 1999 5:07 PM
Subject: RLS Medical Question

Thank you for your very prompt response, it is very appreciated. To answer your questions, I get some very minor relief from moving my legs, but I really don't have the urge to move them. The pain always returns immediately after the movement ends. I also need to walk a fair bit now just to get relief, just "bouncing" my legs up and down or walking around the house does not help much at all. Even though exercise helps some, I get the most relief by laying flat on my back and leaning my legs up at an incline (which, to me, does not sound like something that would help RLS.)

I have not been taking regular drug holidays for over a year now. The pain is now too great to do this, and I began to get very sick during my drug holidays (physical withdrawal.) The problem is that we have found nothing to use as a replacement during the drug holiday, and the pain is just too severe. I used to alternate Darvocet with Ultram, but whenever I stopped either one, I began to feel sick. I even started to be sick with withdrawal symptoms EVERY morning, as these medications last 4-6 hours and I sleep for 8 (the pain relief only lasted about 2 hours.) My physician decided that it would be best to just accept the physical dependence, and monitor me closely, as I have no alternative. As soon, as I began a slow release opiod preparation all of my daily nausea, vomiting and diarrhea disappeared.

No, I have not tried the newest Mirapex or Requip, but I have heard they can be very helpful for many people who were benefiting but having augmentation and other problems with Sinemet and similar drugs. I have thought of initiating a trial of one of these drugs with my physician, but I am skeptical, due to the level of pain I have and the low level of restlessness.

Regarding surgery, I am aware that back surgery can trigger RLS symptoms in some people, but for me, I am in a position where only one of my physicians think I may have some form of RLS. My pain is so severe, that it is likely that something is affecting my spinal cord and causing it to be perceived as leg pain. I am currently planning on pursuing this avenue.

I just think that there is a danger in over diagnosing leg pain as RLS, because there is usually no cure, just treatments for the symptoms. After being told that one has RLS, patients may give up looking for the cause of their symptoms, as the cause of the RLS is usually unknown. Many many things can cause leg pain and RLS is just a category (with very wide bounds) in which one may be placed when the etiology is unknown.

I'll let you know if surgery helps, and give you more details if it does.

Thanks, again,

Medical Reply

RLS is still mostly a diagnosis which is made from the clinical symptoms when other conditions are excluded by negative examination and tests. Usually it is very straightforward and there is little doubt about the correctness of the diagnosis. Your case is a little more difficult due to its severe nature and not including all of the common/typical features that nail down the diagnosis.

From your additional answers, I can say that the odds are very high that your problem is RLS. I cannot say this with an absolute certainty, but after all the tests that you have had and with the description that you have provided, there appears to be little else that would come even close to explaining your medical problem.

I would strongly suggest a trial of Mirapex or Requip. In severe cases such as yours, they may not be helpful (so not getting better with them does not make RLS any less likely), but it is definitely worth a try before undergoing surgery.

I have no problems with my patients getting continual pain/narcotic medications or getting dependant on them, if getting tolerant to them was not the price that one has to pay for this. Once a patient becomes tolerant, even high doses of potent narcotics may fail to give adequate relief.

Sent: Thursday, October 28, 1999 11:58 PM
Subject: A practical device or method to check if PLM occurred or not

I am suffering from PLMD for last several years and now also sleep apnea. For sleep apnea, I am using CPAP. For PLMD, I started using Requip about 3 months before. It did work until the ast couple of weeks. Now I wake up most morning with headaches. How can I be sure that this headache is caused by PLM or something else? The tenseness caused by headache continues whole day. I have not seen letters from other PLMD or RLS sufferers about headache problem. Am I the exception?

I am wondering if there is any device or method available which can confirm if PLM occurred or not. I have rarely seen the leg jerking occurring. Only a sleep study told me what was my problem.

In past I have tried a few drugs for PLM including Ambien. If I take Ambien, than I am OK in the morning. With sleep inducing medicine, PLM does not seem to disturb the sleep. Of course, I don't know if this will work for ever. How about taking Valium? Which one is better? Are some sleep drugs antidepressant?

Often the continuing tenseness (with dull throbbing headache all over scalp and around eyes), caused by PLM means I will need something which can relax me in order to go to sleep. PLM has created a vicious cycle of tenseness and headache.

Any suggestions? Recently I had a CT Scan done for the head and it was normal.

Thank you for your help. Sincerely,

Medical Reply

You are asking several questions which may be difficult to answer without more information. PLMD may occur at night with or without arousals. We first have to know how many arousals per hour you had with the PLMD problem on your sleep study.

The headaches at this point may have nothing to do with PLMD (as there are very many causes of headaches) or may be directly attributed to PLMD. The only way to check whether or not your PLMD has returned despite Requip is to have a repeat sleep study (which will check for PLMD, PLMD arousals and also double check to see if your sleep apnea has worsened and now is the cause of your headaches).

Ambien is one of the best sleep inducing medications. I would not consider Valium for your case. Some antidepressant medication is used for sleep, but that is really not the preferred treatment for this problem.

Sent: Friday, October 29, 1999 12:32 PM
Subject: Restless Leg & Iron Tablets

IRON TABLETS IS THE ANSWER. I had RLS off and on as a child, then when I was in my 40s I started having it all the time. My husband and I looked through a medical book and found what I had. It makes you think it is all in your head. I found that if I laid face down with my legs from the knees down, up and swing back and forth, that this would stop it until I passed out and fell asleep. Before that I would stay up all night walking. I went to the Doctor and he put me on some medicine that did help.

I had started eating ice like a mad person and drinking lots of water. One day a friend said he use to eat ice like that and someone told him to take some iron tablets and it would stop. I started taking them and within three days I no longer wanted any ice. After being on them for about three weeks, I got a cold and did not feel like getting up and taking my medicine for RLS. Usually I could never go without it. Well nothing happened and so I tried it for the next few days, then a week. I could not believe it. I later read in a new medical book that they had linked RLS with Iron deficiency. I also read that eating ice in large amount was also a sign of iron deficiency.

When I looked back, I had been having heavy periods, been VERY tired, bruised a lot and gained a lot of weight. I knew that bruising was a sign of iron deficiency, but I thought you lost weight not gained if you were iron deficient. But I later learned that it will cause you to be B12 deficient, that in turn affects your thyroid which causes weight gain.

My periods have slowed down and almost stopped as I am now 51, so I stopped the iron tablets. Every once in a while my legs will start acting funny and I get right up and take an iron tablet and it stops right away.

I read you never have to worry about taking too much iron because when you do your stomach will start hurting and you will know to go off them right away.

I hope this information helps someone else. Not long after I had stopped my RLS with iron tablets I saw a new report on TV where a woman would ride a stationary bike all night in order to stop her RLS from driving her crazy. I wish I could have called her and told her what I had found out, but I did not know how too.

I think it is great having this website so everyone can help each other.

Margarett M.

Medical Reply

The link between iron deficiency and RLS has been well described for the past few years. Patients should have a ferritin level done as this is more sensitive for iron deficiency than even an iron level or hemoglobin test. The problem is that over 50% of RLS sufferers with low iron/ferritin levels do not improve with iron therapy. Iron therapy also rarely if ever helps RLS sufferers with normal iron/ferritin levels.

I would like to clear up a few medical statements that you made.

Iron deficiency is a cause of anemia but does not B12 deficiency (another cause of anemia) and B12 deficiency has no link or effect on thyroid function or weight.

Not everyone taking oral iron will get stomach problems, and it is possible to get iron overload by taking too much oral iron pills.

Sent: Friday, October 29, 1999 10:58 AM
Subject: RLS. memopause and female hormones.

Thanks for providing a great site.

I've had severe insomnia for years, but have only had RLS the past couple of years. It seems to be increasing in intensity lately (the past 3-4 weeks). It's in my calves, and I have that uncontrollable need to squirm and move my legs around, but no pain. Most of my symptoms are when I first go to bed, and I can suffer for a couple of hours. Since I already have trouble with waking throughout the night, this additional problem means I'm suffering severe sleep deprivation. I'm starting to have some problems during the day, too. I sit at a desk all day long, so I get up often and move around. I have bad kneecaps, so I can't do deep knee bends, run, etc.

I haven't talked to my doctor about it yet, but I have an appointment in a couple of weeks so I will then. I have a question for the group, though. Have you heard that RLS is a premenopause or menopause symptom? I'm 45 and have had premenopause symptoms for a couple of years, and I wonder if that is what's causing my RLS. I'm taking a very low estrogen birth control pill, and wonder if increasing my estrogen might help. Of course, I have no way of knowing if it's connected with menopause or not.

Thanks for any suggestions you might have.

Julie F.

Medical Reply

RLS has been known to be affected by female hormones. Unfortunately, it is like everything associated with RLS in that the effect is quite variable and may be positive or negative in any given RLS sufferer. We have had patients get much better or worse with menopause, and many are not affected at all. The same is true with estrogen replacement therapy in post menopausal women. Only trial and error can tell what is best for you.

What you should do is get your doctor to do is prescribe Mirapex or Requip with some Ambien in case the others do not work right away. You will sleep much better and feel normal again.

Sent: Sunday, October 31, 1999 2:39 AM
Subject: Questions about Permax (Pergolide)

Before I ask my questions about Permax here is a little background about my condition. Back in October 1998 I began to sleep all of the time only waking up to eat some food or go to the bathroom. My doctor couldn't find anything wrong so he sent me to a neurologist who also couldn't find anything wrong and sent me to a sleep center. The neurologist also prescribed Dexedrine to keep me awake so I could go back to work. I finally had a sleep study done in February 1999 and was found to have Periodic Limb Movement Syndrome (PLMS).

The sleep doctor prescribed 900 mg a day of Neurontin (Gabapentin) and it worked but inconsistently for about a month so the doctor increased the dosage to 1200 mg. That didn't help so he decided to put me on Provigil (Modafinil) and I started off at 200 mg a day. This worked great for about three weeks then I had to increase to 400 mg a day, which lasted for about another three weeks. Then I had to take 600 mg a day to keep awake but the doctor said that when you go above 400 mg a day then Provigil is not working and I'm back on Dexedrine.

He has decided to put me on Permax but he said that I have to stop taking Dexedrine for a week before starting Permax and it could take about one to two weeks before Permax would start working. I've already missed three weeks of work when I had the sleep study done so missing another three weeks is not very desirable. So now I finally come to my questions:

1. Why can't I take Dexedrine and Permax at the same time (I asked the doctor and his response was you just can't)?

2. In researching Permax I found some people say you should taper off Permax instead of suddenly stop taking it, is this true?

3. At site it looked like more people are taking Mirapex than those taking Permax for PLMS. Is Mirapex better?

4. Given my past failures with other drugs I'm not getting my hopes up and I'm wondering if Permax doesn't work what would be next?

Thanks for taking the time to read my lengthy message and if you have any answers or suggestions please email them to me. I almost forgot to mention that I've tried the combination of calcium, magnesium & zinc; vitamin B-12; and folic acid without any success.

Jim R., 41 year old, male,
Santa Rosa, CA

Medical Reply

First of all it would be helpful to know what your PLMD index and PLMD arousal index (amount of arousals caused by PLMD per hour) were on your sleep study. Using Dexedrine or Provigil (both of these are stimulants) should be only a temporary measure until the true cause of your daytime sleepiness, the PLMD/arousal problem is taken care of.

Neurontin works well for RLS but I am not sure how well it works for PLMD. The first choice of treatment for this disorder is a Parkinson's disease medication, of which Permax, Mirapex and Requip are currently the best. Mirapex and Requip are considered much better than Permax as they work better on more RLS/PLMD patients with less side effects. I now only try Permax if there are problems with Mirapex or Requip.

Dexedrine and Permax can be taken together. You should wait a little later in the day to take your Dexedrine to see if the Permax is working and thus enabling you to stay awake, rather than the Dexedrine. Permax, when used for RLS/PLMD can be stopped abruptly without tapering the drug.

If Permax, Mirapex, and Requip do not work then the next step would be to consider a short acting sleeping pill. Ambien, Xanax and possibly the newer Sonata are good choices. They may not decrease the amount of PLMD greatly, but they usually markedly decrease the resultant arousals from PLMD, thus restoring daytime alertness.

If the Neurontin is not helping, you might discuss discontinuing it with your doctor.

Sent: Thursday, November 04, 1999 9:16 PM
Subject: Help!

I am the facilitator for the Central Florida RLS Support Group. I would sincerely appreciate your help.

1. My mother, who had the most severe case of RLS of anyone in our local support group of over 100, now totally resolved with Mirapex for almost a year. Mom takes Ultram before bed every night for back pain. She is 82 with a bad case of osteoporosis which might be contributing to her back pain which is getting worse.

I read in the May, 1999 issue of the NightWalkers, an article on page 7 by Dr. Earley at John Hopkins about cases of augmentation and severe rebound of RLS symptoms when Ultram was discontinued.

If any of your patients have experienced severe rebound when discontinuing Ultram, is at least temporary? If it occurs, how long does the severe rebound usually last? Approximately, off the top of your head, how many, percentage for example, experience severe rebound when Ultram is discontinued? If it goes on for more then a few days, will a benzodiazepine or opiate perhaps help alleviate it or more Mirapex in my Mother's case?

I appreciate your help so much as no one in our local support group, although we probably have 15 others on Ultram, with only one stopping it with no problems, have run into this. I was worried as my Mother might soon have to go on to a more potent pain medication for her back pain what might happen if she discontinued Ultram.

2. I am an active member of the RLS Cyberspace group which has 390 members plus the many in our local support group taking Mirapex with roaring success. I have never seen one complain of augmentation or rebound with Mirapex. An article in the journal SLEEP in 1996, authored by Drs. Early and Allen indicates 15% could suffer from augmentation on Permax.  Have any of your patients experienced this or tolerance?

Since most RLSers are on low doses of Mirapex, I would think raising the dose would work, my Mother has a long way to go before getting to the max daily recommended, might resolve their symptoms or is usually an add on used instead?

3. I studied my Mother's lab work before and after she had her B-12 level checked. Her hemoglobin, the lowest it ever was is 11.9 with the minimum being 11. Her red blood cells were low, however. Mom's B-12 level was 203 vs. the minimum the lab reported was 223.

When she went on B-12 shots, she is 82, her RLS symptoms improved some but remarkably when her abysmal ferritin level came up from 8. Another member of our support group had her B-12 level tested and it was fine. She is 49 and the lab reported normal is greater than 200 or less than160 deficient. Different with age but confusing that two labs could be that different!

Is the test for B-12 and folic acid levels only when the hemoglobin runs below the minimum such as 11.0 in my Mother's case? I have never seen on anyone's lab work where they indicated whether there were "larger than normal red blood cells." I only saw on Mother's the red blood cells were low. Just thought maybe they do this and I am missing something or haven't seen the right lab reports.

I just wanted to confirm if B-12 and folic acid are not tested for unless the hemoglobin is below normal -- normally. And maybe red cells count low.

4. Are you still having success when treatment is indicated with Wellbutrin and Remeron without making RLS symptoms worse?

Thanks for all your help and hard work with RLS patients everywhere!

Medical Reply

I will answer your questions one at a time.

1) I have never seen a case of augmentation or rebound from withdrawing Ultram. I do use a lot of Ultram (probably several hundred patients) but have not yet seen anything even close to the report by Dr. Early (which certainly does not mean that this does not happen). One reason for this may be due to my insistence that my patients use the lowest dose possible to relieve their RLS symptoms and that they take regular drug holidays. In addition, most of my RLS patients are alternating Ultram with a narcotic. I still have a significant number of patients on Ultram who never use narcotics (as they like Ultram better), but have still not seen this newly described problem.

I suspect the treatment of this rebound from Ultram withdrawal would be successfully taken care of with narcotics.

2) In my experience, Permax did cause problems with augmentation and rebound, but only in a very small percentage (about 5%). I now use Mirapex for the most part instead of Permax and have found about the same incidence of problems (still about 5%). Interesting enough, some of these patients have been able to switch to the other dopamine agonist (for example from Permax to Mirapex) without the problem returning.

I have seen about the same amount of tolerance to the drugs occurring with Permax, Requip and Mirapex (in the range of 5-10%), but remember that my practice has most of the very severe RLS sufferers who have tried many medications before seeing me. This is a very different group than regular RLS sufferers. It has been shown (and I have found this to be true) that there is no cross tolerance between Permax and Mirapex, so you can change from one to the other if tolerance develops with one of them. I suspect that the tolerance to Requip may carry over to Mirapex, but not to Permax.

3) B12 levels may vary somewhat in different labs possibly due to slightly different testing parameters/equipment in each lab. As long as they report their own normal values for reference, we can tell whether the B12 is normal or not. We suspect B12 or folate deficiency when the hemoglobin (one could also look at the amount of RBC's or the hematocrit, all of which are also on the CBC) is below 12 in women (14 in men) combined with large red blood cells. On a CBC one looks for a high MCV (mean corpuscular volume) which indicates that the red cells are large.

4) I generally do not recommend antidepressants for my RLS sufferers. The response can be quite variable and I do not like to add another medication with such a variable chance of success. If patients are on antidepressants and have gotten worse with the SSRI's, then I do suggest a change to Remeron or Wellbutrin if they need the medication to treat depression. Unfortunately, some patients have worsening/no change of their RLS even with these newer non-SSRI medications.

I hope this answers your questions.

A Reply from Barbara

Sent: Friday, November 05, 1999 12:49 AM
Subject: Re: Me again!

A few more questions once I have studied your replies more thoroughly. I appreciate your help so much! I have been so worried on Ultram ever since reading that article in the May, 1999 issue of the NightWalkers. I feel so much better about it now!

My mother usually takes one Ultram, rarely two before bed, for her back pain so over doing it is not a problem. However, because of her history prior to Mirapex of SEVERE RLS SYMPTOMS, would a drug holiday with a narcotic be perhaps worth a try every so often to hopefully, minimize the chance of the severe rebound eventually when she is taking something else? A guestimate at best on your part I know!

If it is a regular RLS patient taking 1 or 2 Ultram before bed for their symptoms, most of my group take only this, period, how often, i. e., every few months or what time period, do you suggest switching to a narcotic and how long should they be on the narcotic, i. e., one week, two weeks, etc.?

Also, for some RLSers taking low dose narcotics for their RLS, do you suggest they switch another narcotics or Ultram every so often for a drug holiday? I got a little worried about after reading an article on opioids for long-term treatment of chronic non-cancer pain, said that Ultram given at the same time could bring on withdrawal symptoms from the narcotics.

The article also said a physical dependency to the opioids develops in two weeks to two months and is inevitable. However, I assume the patients the article was about were taking near the max doses rather then low doses like the RLSers of narcotics.

The vast majority of the RLSers on low dose narcotics are on Darvon, codeine or hydrocodone and since they do not require a written prescription, I had assumed there was less likelihood of a physical dependency developing but I am still new at this.

I do not understand Dr. Allen saying in his write up, Psychiatric Times: "Most antidepressants exacerbate the symptoms of RLS. Wellbutrin may be an exception to that group because it has a dopamine agonist effect. Dopamine antagonist {neuroleptics} will also exacerbate the symptoms." When in the PDR it says: WellbutrinŽ (Bupropion): "it also inhibits the neuronal reuptake of dopamine to some extent").

Thanks so much!

Medical Reply

It is very difficult to say how much Ultram you have to be on before you are at risk of rebound and augmentation when going off of it. I would have to imagine that the patient would have to be a high dose (at least 4 per day). Dr. Early stated he was not sure whether this was due to dependence developing to Ultram which would imply that they were on relatively high doses.

I would not worry about changing to a narcotic or taking drug holidays from Ultram to prevent the problems that Dr. Early has documented in the case of your mother (as she is on a small dose, and not for her RLS). It is a good idea to switch medications for a few days every 2 weeks in general to decrease the likelihood of tolerance developing.

If regular drug holidays are taken from narcotics (again 2 days off every 2 weeks, with or without Ultram instead of the narcotic), the chance of withdrawal problems occurring will be very small. As all narcotics act on the same receptors, they cannot be used to replace one another for drug holidays. Dependence to narcotics is quite variable, but in general only occurs at high doses. It is difficult to say in what time period dependence can occur, but months, not weeks is the time frame that is relevant. Darvon, codeine or hydrocodone are all prescription medications.

You are misunderstanding the dopamine neuronal reuptake inhibition by Wellbutrin. When the nerve (neuron) reuptakes dopamine it is to metabolize it (destroy it) and thus make it unavailable to continue its action. So when Wellbutrin inhibits this neuronal reuptake, the dopamine stays around longer and works better.

Sent: Thursday, November 04, 1999 10:00 PM
Subject: Marijuana for RLS?

I have severe RLS which is only made better by codeine 60 mg 3 to 5 times per day.  Occasionally, I take Ultram instead (for drug holidays or to reduce the codeine dose), but it does not work as well.  I am also on Prosom most nights to help me sleep.  None of the Parkinson's disease drugs have seemed to help at all.

Recently I have smoked a little marijuana and have noted profound improvement in my RLS.  I need (and generally only take) one or two puffs, and then immediately my RLS is completely gone for 4-6 hours.  Unfortunately, marijuana is illegal and difficult to get.  Have any other RLS sufferers found marijuana to be helpful?

Medical Reply

There are many reports from patients (see page 6, 9/1/97, page 9, 2/9/98 and 2/10/98, and page 10, 3/5/98) about the very helpful effects of marijuana.  This drug has also been reputed to be helpful for cancer pain that does not respond to other medication.  As I have stated before, since marijuana is illegal and has not been studied, we can of course not recommend using this drug.


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