Patient letters on RLS symptoms and remedies- Page 15

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

Date: Wednesday, November 11, 1998 8:34 AM
Subject: Message from Internet

I'm not sure if I have RLS or PLMS. I'm 30 years old and have had these symptoms for over 8 years. My best description of this "crazy leg thing" is my right leg muscles seem to contract slowly, tightening (the feeling of crawling inside) and then suddenly "Wham!" my leg jumps/jerks. 30 seconds will pass and the whole thing starts over again. At this point I have an incessant need to keep moving my leg, contracting the muscles, stretching the muscles.... It always happens when I get in bed and try to fall asleep.

I'm currently on Prozac, amitriptyline, and Mogadon. I'm also taking Magnesium and B12 supplements but they don't seem to be helping. Two remedies that I have found to work (but I have to have the energy to do them, I also have Chronic Fatigue Syndrome) is taking a walk around the neighbourhood late at night with my husband, just before bed. This seems to both exhaust me and tire my legs. I live in Canada and the weather isn't always the greatest for these late night walks. The other remedy (and I hope you don't find this too tacky), is to have sex right before falling asleep. Honest to god, it seems to give my legs a good workout and I sleep well afterwards. Obviously, we can't do this every night for the sake of relieving my "Crazy leg", it sort of takes the spontaneity and closeness out of making love! But when all else fails..."oh Honey...."

My husband tells me that I have "tremors" throughout the night. My leg is constantly "shaking/moving" during my sleep. I think the RLS may be the underlying cause to my CFS. I cannot get into a cold bed, it sets my leg off almost immediately. An electric blanket has helped in this area, along with a hot water bottle placed at different spots along my leg. and of course the wonders of a hot bath can soothe some of the RLS. Massaging makes my leg 1,000 times WORSE, as soon as I start to rub it, it really starts to go crazy. My Mother has RLS (thanks Mom!), so I do believe it is definitely hereditary.

Thank you for setting up this web site, it has helped me realize I'm not crazy (just my leg), it has given me some other ideas to check out with my doctor and it's nice to know there are other people out there who understand what I'm going through, and why I'm so darned tired during the day!!!!!

Medical Reply

You are definitely not crazy. Your symptoms sound just like RLS and the leg jerks are PLMD. Treatment with a Parkinson's disease drug (such as Mirapex, Permax, etc.) should give you relief. Prozac and Amitriptyline may worsen RLS.

Your Chronic Fatigue Syndrome may very well be due to RLS.

Date: Wednesday, November 11, 1998 7:35 PM
Subject: Non-Drug treatment for PLMD

I am a 39 year old male who has PLMD that has become worse over the past year. I am in generally in good health -- I am a vegetarian, run 4 to 5 times a week and use weights 2 days a week. The PLMD doesn't wake me, but often wakes my wife. I don't feel well rested after bad nights. I take vitamins, St. John's Wort and a natural sleep aid (contains valerian root, scullcap, zizyphus, passion flower, ...).

I am looking for a natural, non-drug treatment for PLMD. Are there any vitamins or minerals that I could be missing from being a vegetarian (I've been one for 8 years) that could be related to my PLMD.

Any help would be greatly appreciated.

Thanks,
Patrick

Medical Reply

Vegetarian diets can sometimes be low in certain vitamins and minerals. The ones that are associated with RLS are folate (found in green vegetables), iron and B12 (these are the ones that you may have some concern on). However, we are not sure if there is an association with PLMD, as there is with RLS.

Date: Thursday, November 12, 1998 8:08 PM
Subject: Needing a referral..

After reading lots of information on your web page, I know I have a classic (although mild) case of RLS. Have the classic symptoms, onset, etc.

I finally made an appt with a new internist (new to me and new to the field of medicine). He prescribed Sinemet CR, however after discussing it with the pharmacist and reading about the side effects, I am reluctant to take it. My symptoms disturb my sleep, but not nightly and I prefer to treat the symptoms on an as needed basis, at least for now. He did acknowledge that he had no experience with treating RLS, but felt the other choices listed in the treatment options page were inferior.

So I then scheduled an appt. at one of the accredited sleep centers in Michigan. I was not comfortable with the physician. He ordered quite a bit of blood work done, although he told me that it was "95%" that they wouldn't find anything wrong, he stated that a sleep study might be necessary down the road, and finally, reluctantly prescribed 15 tablets of Ambien, and a request that I come back in a month. I have no history of medical problems, take no other medications and am in very good health. I felt that my insurance was of greater interest than my relief of symptoms.

I'm getting tired of scheduling appointments with physicians who can't/don't listen to me and work with me to find a safe, effective solution for this.

I would appreciate any recommendations for experienced physicians in the northern suburbs of Detroit.

Thanks you for all the information you provide, it is of great help!

Julie B.

Medical Reply

It is often difficult to find a good RLS doctor, even amongst board certified sleep specialists. You may want to go to your local RLS support group and see if others have found a physician well versed in RLS and personable. Here is a list of support groups in your area: MICHIGAN

Oakland County Support Group

Shelly Skelton

248-682-7228

Greater SE Michigan Area Support Group

Lillian Eory

313-641-1135

Western Michigan Support Group

Neva Warsen 616-532-1698

You can also check with:

American Sleep Disorders Association (ASDA)

This is the professional society of sleep specialists and sleep centers. You can check out their web site homepage or if you wish to find a sleep professional/center in your area, go directly to their state by state listing of accredited sleep centers.  

A Reply from Julie B.

Date: Sunday, November 15, 1998 3:15 PM
Subject: Re: Needing a referral..

Thanks for your reply. I have talked with Shelly (Oakland County Support Group) briefly, and we are going to talk more when we both have a moment at the same time! Sure is frustrating to have doctors who don't know/understand (not that all doctors can be versed on all diseases. My brother is a rheumatologist). Shelly is going to give me the name of the physician she uses, so perhaps that will help.

Is it that we're in the more conservative Midwest that the medications like Valium, Ambien and Tylenol with codeine make the doctors respond as though you just asked for pot or something like that?? I asked for any of those (or any of the drugs your site suggested that can be taken on an as needed basis) and was told that Ambien only works for 7-10 days, that Valium "is a muscle relaxor" (said as thought that was inappropriate for this purpose), that Xanax could have negative interactions used along with Ambien (I clarified that they would not be used together, but that I had some nights when I knew the symptoms would come, some nights I'd rather go to sleep and see if they appear).

I'm a 40 year old former Clinical Social Worker and mother of 2 kids, so I'm not exactly coming across as much of "party-girl".

Anyway, guess I'll keep looking for the right doctor.

Thanks again for your info and help!
Julie B.

Medical Reply

Your concerns about not getting simple RLS medication is certainly not confined to the conservative Midwest. The real problem is that most doctors do not really understand RLS and therefore feel very uncomfortable prescribing long term medications that have an addiction potential.

You would not see the same physicians withholding anti-inflammatory drugs from arthritic patients or pain killers from cancer patients. But, these doctors are as ignorant about RLS as they are educated about the everyday disorders that they treat. Hopefully, education will change that, and we are certainly trying our best to fill this need.

You can quote me as saying that given correctly (for example, with regular drug holidays), the RLS drugs are generally very effective and very safe.

Date: Wednesday, November 11, 1998 6:08 PM
Subject: (no subject)

I had mild RLS symptoms which began when I was in my twenties.(I am now 48). Eight years ago I was diagnosed and treated for clinical depression and prescribed Prozac. Unfortunately, Prozac increased my RLS considerably.

My doctor then introduced Xanax to relieve the RLS. Everything was working well, very little RLS symptoms and I was able to get a reasonable nights sleep. However, about 6 months ago we noticed that Prozac was not managing my depression. After trying many different anti-depressants with mixed results, we have found that Wellbutrin is working very well. Unfortunately, my RLS has increased to a level that is beyond belief. I initially used Ativan but at 3 mg it was still not handling the RLS symptoms and I was left feeling very groggy during the day.

I tried Sinemet for a few weeks and found that my temperament (anger) was very severe and had to stop taking it. I should mention that I tend to be very sensitive to any medication and if there seems to be some unusual or obscure side effect, I'm the one that will come up with it. I'm now back on Xanax and still haven't found a dosage that will allow me to sleep properly.

My doctor and I are at our wit's end. I am very reluctant to embark on another "experiment" by adding another drug to my regime. It took months of severe depressive episodes and horrid side-affects to find the Wellbutrin.

I am desperate to find a solution. Do you have any idea about any possible contra-indications by mixing Wellbutrin and other recommended drugs. I still have to do some research on the remedies you are suggesting but I would like an opinion on the best choice at the moment.

Yvonne K.

Medical Reply

Wellbutrin can be mixed with most of the common RLS drugs. I would recommend that you add a Parkinson's disease medication (Mirapex, Requip, Permax) which should have an excellent chance of helping you get back to normal.

If that does not work, you may have to resort to narcotics (Tylenol with codeine, Vicodin, etc.).

Date: Friday, November 13, 1998 9:00 PM
Subject: RLS

I am 48 years old and have had RLS for several years now. It seems to appear after I have gone to bed. I am on two antidepressants (Serzone & Prozac) and feel that they may be causing the symptoms. However, the combination of these two drugs really does relieve my depression.

I am going to try to put up with the uneasiness rather than get off the medication. Will the RLS symptoms of the medication cause any long term problem?

Please let me hear from you.

Medical Reply

As you may have already on our web site, the antidepressants can cause significant worsening of RLS, although in some patients they may even be helpful. The medications should not result in any long term problems, even though they have activated your RLS (unless the RLS gets severe and then causes insomnia, etc.).

If the symptoms are mild, then you can just deal with them conservatively. However, if it starts affecting your life and depriving you of enough sleep, consider medication (see our RLS Treatment Page).

Date: Sunday, November 15, 1998 12:00 AM
Subject: Miracle with Permax dose change

I have (or maybe should say had) a very severe case of RLS.I have tried many types of treatment; Klonopin, Sinemet, Methadone, to name a few. Most helped for awhile, but I always ended up walking the floor for hours in extreme discomfort.At times my foot & leg would jerk as in a spasm & I would be unable to walk.

For several years I have been on a schedule of 5 to 7 Permax, 0.25 a day, starting with two at 3 p.m. when the symptoms were usually at their worst, then two more Permax around 6 p.m. & two or three at midnight when I went to bed. But as I said, the discomfort was relentless almost every day.

About 6 weeks ago, my husband suggested I take the Permax through out the day.   So, starting at 8 am,  I took one every four hours,  the last one at midnight, for a total of 5 pills. Like a miracle, I have not had any attacks since.

Have you heard of anyone else trying this and having such instant & dramatic results? It truly is a miracle to me. I would appreciate any comments you might have.

Barbara P.

Medical Reply

Your case is a very interesting one and you have described a very unusual result to an unorthodox RLS/Permax treatment regimen. After hearing your initial story and lack of success with 5-7 Permax, I would have suggested to change to Mirapex or Requip (there does not appear to be cross tolerance with these drugs to Permax). I would not have ever suggested to take the Permax hours before your RLS symptoms start in the afternoon, as there generally does not appear to be any benefit or logical reason for doing that.

I really have no idea why your change in therapy to every 4 hours Permax starting at 8 am should give you relief, when a higher dose of more accepted dosing did not help. I have not heard of anyone getting benefit from starting treatment hours before it is needed so I cannot tell you why you got better.

I will post this on our web page and see if others have had any similar experiences.

A Reply from Barbara P.

Date: Sunday, November 15, 1998 3:37 PM
Subject: Re: Re:Previous letter sent.

Thank you very much for answering my letter.Am I right that the Permax boosts a certain chemical in the brain? If so would not allowing the level to drop keep the symptoms at bay? Or am I way off base with this theory ?

Meanwhile I am certainly enjoying the absence of a very troublesome condition, whatever the reason! I think your website is great.

Thank you again.
Barbara P.

Medical Reply

Permax does not boost any chemicals in the brain. It acts like the chemical dopamine in the brain, but in RLS there is no decrease in dopamine in the brain as there is in Parkinson's disease. Sinemet (another Parkinson's disease drug) acts as a pre-drug and thus causes the increased formation of dopamine in the brain.

In RLS, there is no reason to try to keep the dopamine or Permax levels from dropping. There has been in addition, no clinical evidence supporting keeping the drug or dopamine levels up continuously. In the meantime, enjoy your good results with your unexplained new therapy.

Date: Sunday, November 15, 1998 5:24 PM
Subject: Mirapex

Thank you for answering so many questions at the last support group meeting. It was very helpful. But I have a question that was not addressed:

I have been taking Mirapex with good success until I fell a month ago. Since then the medication seems to be much less effective. Since I fell I have had severe pain in my back in the same area as my restless leg problems. I am now taking 2 Mirapex at bedtime and one during the day, but the restless leg still comes severely, intermittently day and night, where before it was completely gone.

Could the fall have made the situation worse? Is it possible to increase medication? My doctor seems to have little knowledge or understanding of RLS. Do you have suggestions?

Thank you for your time,
Mrs. Leola C.

Medical Reply

You did not say how long you were on the Mirapex before it stopped helping you. Also did the problem get worse shortly after your fall (back trauma is a common cause of worsening RLS).

Mirapex can be increased slowly (increase by 1/2 or one tablet per week, for each dose). If you are not better by the time you reach about 6 tablets per day, then alternate therapy should be explored.

You may want to bring in our Treatment Page, or a copy of our RLS booklet to share with your doctor which should help educate him on how to treat your RLS.

Date: Sunday, November 15, 1998 3:24 PM
Subject: Re: Permax

The last time I contacted you, I was concerned about possible augmentation and rebound with Permax. I decided to stick with the Permax a while longer, and rigorously control both caffeine and alcohol intake, which I suspected also played a role in my RLS.

Currently, I am still taking the same dose of Permax, (2 and a half to three of the .05 mg. tablets split between the evening meal and bed time), am still taking St. John's Wort, and am engaged in a serious eating plan to address the weight gain. Using this strategy, I have been very comfortable about 90 % of the time.

Today I have two questions for you:

Firstly, is there any research which connects loss of libido to Permax? I have searched the web on this subject, and also with regards to St. John's Wort, (although I did not have the problem when I was on St. John's Wort alone) and have not found any concrete information. Another factor may be that I am peri-menopausal, but somehow I suspect the Permax.

Secondly, For the past two weeks, I have been taking small amounts of Xanax because of a sudden downturn in my mood. It helped immediately and I see it as a temporary measure. It's got me thinking though , about a back up plan if I sink into a deeper, long term depression. I have heard that Serzone or Celexa (clobazam) might be good choices for antidepressant medications without increase in RLS symptoms. Do you have a comment on them?

Thank you once again for your advice.

Sincerely,
Margaret

Medical Reply

There is no literature or references that I could find that link Permax with a loss of libido. Libido can be affected by many different things, and it is often hard to blame or pin down one agent.

The antidepressants as a group can make RLS worse or better. There is some mild evidence that the newer antidepressants (which includes Serzone and Celexa) may help RLS more than hinder, but that is still a very individual phenomenon. The only way to be sure, is to try the drug and see what it does to your RLS.

Date: Monday, November 16, 1998 8:29 PM
Subject: RLS

I spent years kicking my husband out of bed. Some nights were so bad that all I could do was walk the floor, half asleep on my feet. It began to bother me when seated at my desk at work. Trips to the doctor were of little use since they could only give me medications to mask the symptoms and not solve the problems.

One day an osteopathic physician commented to me on the amount of diet cola I was drinking and asked if I didn't have a problem with restless legs? I followed his suggestions. Gave up artificial sweeteners, started taking a calcium and magnesium supplements and drink 12 oz of Chinese green tea per day.

Guess what...no more RLS. Sleep like a baby. Interestingly, if I miss the RLS, all I have to do is have a few diet sodas..... Is there a connection? No proof, but I don't touch artificial sweeteners any more.

Medical Reply

We have heard of diets high in sugar and carbohydrates causing RLS, but not artificial sweeteners. Caffeine, which is present in diet and regular colas, is linked to worsening RLS. Have you tried regular colas to see whether it is the caffeine or the artificial sweeteners in the colas that worsened your RLS?

A Reply re: artificial sweeteners

Date: Tuesday, November 17, 1998 8:47 PM
Subject: Re: RLS

I seem to have no problem with caffeinated coffee or soda...as long as that damned nutra sweet is not there. I even have a problem with sugar free gum. My legs start to get all twitchy... I don't know if the connection is valid but I do no it's been three years with almost no problems since I swore off the artificial sweeteners. Every once in awhile I have a diet soda and my legs will be running all night.

Thanks for your response.

Date: Tuesday, November 17, 1998 6:50 PM
Subject: RLS/PLMD

My husband has recently had leg and occasional body tremors during sleep. These tremors do not wake him usually. He does not have any noticeable pain associated with the tremors. However, he does sleep a lot during the daytime without any tremors. I am the only one losing sleep right now.

Our doctor sent him to a neurologist. The neurologist prescribed "Sinemet" without any testing. The doctor said it sounded like he had the RLS/PLMD problem and to try this drug.

My question: shouldn't there be more extensive investigation as to what his problem actually is before prescribing a drug such as this that has obvious side-effects? I am concerned and worried... I don't want him to take medicine that may in time damage his body when it may not be necessary at all.

Medical Reply

RLS is a clinical diagnosis only (there really is not testing to help prove this diagnosis) based on the patient's symptoms. The main symptom is a painful/unpleasant sensation that is very hard to describe (often described as ants crawling up the inside of your leg) that makes you want to move your leg to alleviate the sensation. It does not sound like that is what your husband has, so RLS does not seem to be what your husband is suffering from (unless I am missing some information that is not in your letter).

PLMD (Periodic Leg Movement Disorder) are leg jerks that may occur when sitting or more commonly when sleeping. This disorder only occurs in 85-90% of patients with RLS, but can also occur by itself. It is treated only when it results in daytime sleepiness (the leg jerks prevent these patients from getting deep, restorative sleep). Before PLMD is treated, a overnight sleep study should be performed to prove that it is the correct diagnosis and that it is affecting the sleep enough to warrant life long therapy.

Date: Wednesday, November 18, 1998 8:43 AM
Subject: Message from Leon K.

I would like to update you on my condition and get some additional guidance. Generally I am doing quite well. Following are the details:

As you may recall from our exchange of e-mail on October 3rd and 4th that I was going to try and move over from Ultram to Mirapex. I had been taking 50mg of Ultram 3 times each day.

On October 4th 5th and 6th I took I tablet ( 0.125gm) of Mirapex and reduced my total daily Ultram from 150 mg to 100 mg. From October 8th I increased the daily Mirapex dose to 3 tablets (each of 0.125 mg) and at the same time gradually cut back on the Ultram. By mid October I had cut back the Ultram to 50 mg per day.

On November 10th and 11th I took a two-day drug holiday from Ultram while still taking three tablets of Mirapex. The drug holiday was much less difficult than I had experienced in the past.

From November 12th I cut back on the Ultram to 25mg per day but increased the Mirapex dosage from 0.375 per day to 0.5 mg per day. This included .25 mg in the morning and .25mg in the late afternoon followed in the early evening with .25 mg of Ultram. I experienced some pain in the late afternoon and early evening before taking the .25 mg of Ultram. Since November 15th I have taken .375 mg of Mirapex in the morning, .25mg in the late afternoon, followed by .25mg of Ultram in the early evening followed by .125 mg of Mirapex before going to bed. For the most part the pain has been eliminated.

Since mid October I have also been taking between .5mg and 1mg of Xanax to help me sleep. I have tried to do without the Xanax but have been unable to sleep well without it.

In summary, if I take .375 mg of Mirapex in the morning and .25 mg in the late afternoon, followed by .25mg of Ultram in the early evening and .125 mg of Mirapex and 1mg of Xanax before going to bed I do quite well. I have no side effects and sleep well. Also my most recent drug holiday from Ultram was the easiest I have ever experienced.

Following are my questions:

1: I am taking a daily dose of Mirapex of .75mg, which is above the .2-. 4mg which (based on the literature on Mirapex) appears adequate to control most patients. Is the daily dosage of Mirapex that I am taking too high?

2: Should I try to do away with the Ultram completely and increase the Mirapex dosage further?

3: If I stick with the 25 mg of Ultram per day should I continue to take a drug holiday every two weeks?

4 Do I need to take a drug holiday from Xanax and if so how frequently and for how long. Also is there anything that I can take in place of Xanax if I do have to take a drug holiday?

My apologies for this rather detailed history and the related questions. I must tell you that I am very pleased to have been able to cut back on the Ultram as I somewhat dreaded the drug holidays. Perhaps I may have to revert back to it, but at any rate there is a standby just in case.

The doctor that prescribes my medications was very supportive of the move from Ultram to Mirapex and before making any further changes I will be in touch with him again.

Thanks for your ongoing assistance.

Sincerely,
Leon J. K.

Medical Reply

The average daily dose range of Mirapex is 0.3 to 0.5 mg per day, but there are many patients who need a lot more or less. It is safe to go up to about 1 mg per day without much concern. Parkinson's disease patients generally use 2-4 mg per day, and can go up to 6 mg per day.

My suggestion would be to increase the Mirapex to about 1 mg per day if necessary, while trying to get completely off Ultram. You can then use Ultram only when needed for RLS worsenings, long trips, etc. You can also use Ultram for your drug holidays from Xanax, if the Xanax is needed for your RLS control. If you cannot get off Ultram, then you should take 2 day drug holidays every 2 weeks.

Once you get complete control of your RLS, the question will be whether you need Xanax for RLS, or just as a sleeping pill because you are habituated to it. If you cannot taper off Xanax also, then you should take a drug holiday of 2 days every two weeks.

Date: Friday, November 20, 1998 9:03 PM
Subject: Re: Permax for RLS (see previous letters Sept. 20 and Nov. 5 on Page 14)

Mirapex is working great, although not as good as opiates, it is certainly very usable. It is more effective with no appreciable side-effects compared to Permax.

I consider my condition under control. I am thankful, but since I have a 'fix it' personality, I seek a cure, not just a permanent way to control it.

Thanks again for all your help.

Keith L.,
Columbus, OH

Medical Reply

You do not say what dose of Mirapex you are currently taking. Often, increasing the dose a little may take care of the remainder of your RLS symptoms and be as good as the opiates for you. As most RLS patients use Mirapex in the very low dose ranges, there is usually quite a bit of leeway in treatment.

We are all waiting for a treatment that is a cure for RLS, not simply treating the symptoms.

A Reply from Keith L.

Date: Friday, November 20, 1998 11:21 PM
Subject: Mirapex

The dose is 0.125 mg as needed. I understand this to be the minimum dose. It virtually eliminates my symptoms. The reason it isn't as good as opiates is that it doesn't work as quickly or last as long, is about 4 times the cost, and is a bit harder to find than simple codeine. The BIG advantage of Mirapex is that it easier to get a prescription for it. Secondly, I appreciate the fact that the pill is much smaller and easier to swallow.

The disadvantages might seem small, but I get real picky when its something I have to take for the rest of my life. It this were a 2-week therapy I wouldn't have been concerned in the slightest.

Keith

Medical Reply

It sounds as if the Mirapex is as good as is a good as it will get for your now. It does have a much slower onset than the opiates, but if you take it 30-60 minutes before the times/situations that worsen your RLS (going to bed, long car rides, etc.), you can end up with the same result.

You can still use codeine occasionally when necessary for quick relief. When used just sporadically, opiates are extremely safe and there will be no issue with tolerance or addiction.

Date: Saturday, November 21, 1998 1:22 AM
Subject: RLS

I have had RLS for at least 20 years, and have been on Sinemet for the last 11 years. I am 37.

My main question is:  If I get pregnant is there any safe medication I can take? All my doctors tell me there is no research to show that any of the Parkinson's disease drugs are o.k. to take while pregnant because most people are older who take it. The last time I was pregnant I went through 9 months of hell with only 1-3 hours a night sleep (possibly 4-5 near the end). I was so tired I couldn't even watch TV, do housework, read, etc. I tried sleeping standing up, etc. Then I had to have 8 weeks "bed rest"!!! But I love my son so much and want to have another child, that I will even go through that again. I tried everything to sleep even self-hypnosis (couldn't sit still long enough to "relax"), and acupuncture (they couldn't do anything while I was pregnant).

Another question:  Sinemet works wonderful except it doesn't work long enough. Is there a longer acting Sinemet out there? The 25/100 only works 4 hours but takes 1/2 hour to work. The 50/200 CR works for 6 hours but it takes 2 hours to start working. Even though I am a CPA the math gets pretty confusing... And I feel like I am getting too much during the lap over times. I take 25/100 at 7 p.m. (so I can read my son a bedtime story), 50/200CR at 9 p.m. so it kicks in before the 25/100 wears off and then I have to wake up during the night and decide whether I need a 25/100 or a 50/200CR to get me through the night (depending on what time it is).

Side note: Sinemet makes me very sleepy so I also take Percocet during the day (Sinemet if I want to nap) but mostly don't sit down much all day and evening. Percocet also helps my restless arms.

My doctor wanted me to get off Sinemet because it could cause tremors. Can it in such a young person as I who has taken Sinemet for so long? I have tried many different medications last year (Permax, Klonopin, etc.) but was so tired I may not have given them a long enough chance to work.

Also, my fertility doctor told me that since I was taking Sinemet for so long that I should be having regular blood work done (every 3 months) to see that my liver is okay and renal (kidney) function is okay. Is this true?

Sorry this is so long. (It was longer!). I will write later on questions about my dad for whom Sinemet does not work and does not get much sleep....

Thank you,
Julie

Medical Reply

Pregnancy generally causes RLS to worsen in 50% of women. If the symptoms are severe enough to warrant drug therapy, then the sedative class of medication has been used for treatment (with the approval of the patient's obstetrician). Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages. The Parkinson's disease medications are not approved for pregnancy.

Your dose of Sinemet is getting on the high side (over 2-3 of the 25/100 tablets per day), so the risk of getting augmentation or rebound becomes greater. Although the Parkinson's disease patients are at risk of a movement disorder called dyskinesia (involuntary movements, not tremors), this luckily does not seem to be a problem in RLS patients. Although Permax did not seem to help you with a short trial, you (and possibly even your father) may have more success, with a greater margin of safety with the newer RLS drugs, Mirapex or Requip (see our RLS Treatment Page for more details).

For patients on chronic Sinemet therapy, blood work (CBC, hepatic and renal tests) should be done every 3-6 months for the first year, then every 6-12 months after that. It is uncommon to find abnormalities on these tests, but it is better to be on the safe side.

Date: Saturday, November 21, 1998 9:40 PM
Subject: RLS?

I do not have RLS in the sense of a sleep disorder. It occurs in the evenings when I sit down and try to read. For several years I have found that I cannot read or watch TV in the evenings because I cannot sit still. However, when I go to bed, I can read without experiencing RLS.

To overcome the RLS in the evenings I usually do something that requires me to move around. An example might be to work on a project, move stuff, organize things, write. Anything that has a degree of activeness.

Medical Reply

Your RLS is relatively mild, so it is not affecting your ability to sleep yet. Your description is otherwise typical of RLS. The RLS may stay mild, or as you get older, it does have the potential to worsen and affect your ability to sleep. If it does, do not worry, as it is generally easy to treat.

Date: Monday, November 23, 1998 10:07 AM
Subject: RLS

Thank you very much for responding to me the other day. You have a great website.

This question is about my dad who has had RLS for 20 years or so too. He tried Sinemet but it didn't last for long, Darvon, Valium, Percodan with the same effect. He takes Valium now but is awake after 1 hour and can fall asleep again in the early morning.

He has diabetes and high blood pressure, but other than that I don't think he has much else wrong with him. He is 83.

What medication should he suggest to his doctor to take next especially with his diabetes? (His doctor did not acknowledge RLS until 5 years ago. But he is my dad's only resource as he lives in a small town and can't drive very far. Since then I give my dad articles and he gives them to his doctor!).

Thank you,
Julie.

Medical Reply

The diabetes has very little relevance to your father's RLS condition or to possible treatment. My first recommendation would be for him to discuss with his doctor about trying Mirapex.

He probably need a one to two week drug holiday from his Valium as he is likely tolerant to its effects now. After that 2 week holiday, Ambien or Xanax may be a better choice for nighttime sedation. But he should not forget to take regular 2 day drug holidays every two weeks from any sedative medication.

Date: Monday, November 23, 1998 12:24 PM
Subject: re: My personal findings with RLS therapies

My name is Hud Ramelan and I've recently arrived in Oakville, Ontario--having departed beloved Victoria, B.C. in order to spend some time with my father. I have had RLS/PLMD since a very early age. I remember kicking and clenching my buttocks every night in bed! I awoke tired as a cadaver each day and rarely managed to stay awake during Oh Canada...

I am somewhat of a 'mad-scientist'-type, or shall I say neo-shaman? Whatever the case may be, I have personally undertaken to learn about pharmacological agents firsthand--i.e., a sort of 'situated' learning experience that has taught me a heck of a lot. I have experimented with so many types of agents in my life that I think that I have a very good grasp of the theoretical and practical aspects of drug treatment. Enough blowing my horn!

Some substances that I have found particularly useful in my battle against the drive to march to the nightwalkers' drum are as follows:

1. Hydergine. (ergoloid mesylate). this drug is officially listed as an antagonist of the alpha 1 adrenergic receptor--in the Merck Index. However, according to California neurologist Jay Goldstein, Hydergine appears to have an affinity for D2 dopamine receptors, and therefore it can be used as a dopamine agonist. He has found that Hydergine can be used for neurosomatic disorders (fibromyalgia, CFS, RLS...) at a dosage of about 3mg t.i.d. He further states that it may be tried for Parkinson's at a dosage of about 30mg per day. I can attest to the effectiveness of Hydergine as a dopamine agonist, as it brings relief for RLS.

2. DLPA (or dextro,levo-phenylalanine). This racemic amino acid preparation has the feature of slowing the breakdown of the body's endogenous opioids (endorphins) by inhibiting enkephalinesterase(?) Taken daily in the morning before food at a dose of about 1 gram, followed by perhaps a further gram in the mid-afternoon (always away from protein foods), DLPA can really help to preserve whatever natural opioids are in circulation. In short, DLPA can be used as an effective pain-reliever and anti-inflammatory, not to mention a mild anti-depressant. After 4 or so weeks of daily use, the dose can be reduced to about 500mg per day. I could go on, but I'd better stop.

3. Kava kava. (Piper methysticum). This is my latest discovery! And boy, does it ever make life easier. This herb is currently being hailed as a good alternative to many anxiolytics and anti-depressants... It appears to have the following actions: Gaba A agonism, Dopamine agonism (dosage-dependent), myorelaxant, serotonergic, anti-inflammatory, anesthetic, and hormone regulating actions. It has recently been shown to have neuroprotective action, as well as 'membrane stabilizing' activity, presumably due to its sodium channel regulating properties!

Now, before you dismiss my 'mad-science' as quackery, check out some chemistry references, or some alternative therapy ref's. I'm sure that I'm not leading anyone down the garden path. I am most certainly the only person I can see down this path, in this garden. I would appreciate any comments or questions or criticisms or suggestions... I'd be happy to cite some references if anyone would like them!

G'day, eh!

p.s. I did manage to type this entire entry without wiggling and fidgeting and flexing my ankles! Give me that credit!

Hud

Medical Reply

Interesting letter. We will post it on our web site for information purposes. We cannot recommend or endorse any treatments that have not been studied medically for RLS.

Date: Tuesday, November 24, 1998 1:00 PM
Subject: PLMS and Foot Reflexology

For the past six months I have had PLMS which has greatly disrupted the sleep of both my partner and myself, enough to the point where he wanted to sleep in another room rather than endure the kicking.

I tried many things (warm baths, massage, etc) and had even scheduled an appt with a neurologist. But I'd like to share a recent experience which I am hoping will be permanent.

I applied reflexology pressure to the space between the metatarsal bones of the big and second toes. This pressure point relieves stress in the neck and shoulder girdle area and is somehow connected to the leg movement. I happened upon this when I asked my husband to massage my sore neck one day; when he applied Shiatsu pressure to the neck my leg jumped!

I used to practice reflexology and have found it effective for relieving stress in muscles, intestines, sinuses and so on. Working on the metatarsal space has corresponded with a ten-day continuous run (so far) of kick-free nights, and I hoping the relief will continue.

Chris

Date: Tuesday, November 24, 1998 11:41 AM
Subject: My daughter's Legs.

Quiet by accident I came across a statement that said "restless leg syndrome" and had to stop dead in my tracks. I did a search on it and come up with your website, which by far had more information then any other website that mentioned this problem.

I have to ask though, how young can it affect someone? My daughter started this restless leg movement, which at times can look quiet... interesting, for someone her age. She started at 3 months and it lasted for almost a year, then seemed to stop or considerably slow down until just recently when we went through a week of the constant leg movement.

It happens while she is awake, however it DOES take her an abnormally long time to go to sleep. When I asked her why she was doing this with her legs the only thing she can tell me is that her legs hurt. She is too young to give me a comprehensive explanation of why she is doing what she is doing.

Any information would be helpful. I do have an appointment set up with a pediatric neurologist within the next couple of weeks for this issue.

Thanks,
Mickey

Medical Reply

Most of the work with RLS has been with adults as children have difficulty describing their symptoms and even in adults the diagnosis is only made in a small percentage of those who actually complain about the problem to their doctors.

A significant percentage of adults who have RLS will tell you that they now realize that they have RLS ever since they can remember. It was often dismissed as "growing pains" or given even less credence by parents and health professionals. There is a growing body of knowledge now on how to diagnose and treat RLS in the very young, but the expertise on this is in only a few very limited hands.

A pediatric neurologist is a very good place to start. At your daughter's age, he may have a difficult job figuring out the correct diagnosis.

Date: Wednesday, November 25, 1998 2:35 PM
Subject: Re: RLS (see previous message on Page 14, Oct. 22, 1998)

I have tried without the stinky stuff (Flexall 454) and just the massage and it doesn't seem to work as well. I'm leary of meds due to prior experience with prescription drug addiction - 12 years ago. Still not sure if I want to try to handle downers. But, as a last resort, I may have to consider the possibility.

Anyone you know have the same concerns? Thanks again for responding.

Camye T.

Medical Reply

Addiction to the sedative class of medication is always a concern with both doctors and patients. We normally avoid this by insisting on 2 day drug holidays every two weeks. This regimen will help avoid addiction in 99+% of RLS patients when followed.

With your history of addiction, I would suggest you stay away from this class medication anyway. If you ever do need a nighttime prescription sedative, then Ambien is the one to use, as it so far has been shown to be non-addictive.

You would be a good candidate for the Parkinson's disease medications, such as Mirapex, Permax or Requip. They are non-addicting and generally work extremely for RLS at very low doses.

Date: Thursday, November 26, 1998 3:31 PM
Subject: Smoking and RLS

I have had RLS since I was 26 years old. I am now 55. Throughout the years, my condition varied from mild to moderate, often going into remission for months at a time. Unlike many of my other fellow sufferers, my legs seem to feel better with warm weather and especially warm sun. (Makes it difficult because I live in the Northeast.)

Within the past three years, my condition has become severe. I do see a neurologist on a regular basis and he does take RLS seriously, however, he lets me take the lead on experimenting with what medications help control the symptoms. Your WEB site has been a tremendous education, thank you! I presently am taking three Mirapex 0.125 mg a day, eight hours apart; Neurontin 300 mg, two capsules two times a day and Ambien, 10 mg at bedtime. I only went on the Mirapex a little over a month ago. I was on Sinemet and I gradually decreased the Sinemet while I increased the Mirapex.

The Mirapex worked great at first and my husband and I were thrilled but now for the past week my condition has increasingly gotten worse. I am extremely tired during the day, my legs feel very weak, at times I am dizzy. I am groggy most of the day. At bedtime, I feel very sleepy but as soon as I close my eyes, my legs wake up and that's it for sleep until 2 or 3AM.

] I want to call my Neurologist tomorrow but I not sure what to try next. I have already been on Sinemet 25/100, Sinemet CR 25/100, Apap/Codeine 300-30 mg, Parlodel 2.5 mg, Hydrocodone/Apap5-500 mg, Restoril and Klonopin.

Also, my doctor said that some reports indicated that smoking relieves the condition. I don't smoke but I wondered if you have any information regarding smoking and RLS.

Mary

Medical Reply

I am not sure where your neurologist saw the information about smoking helping RLS, as the only literature that can be found on this topic states that there was no relationship between smoking and RLS. That was in an article published in Sleep 1997 Apr;20(4):290-3 called "Cigarette smoking as a risk factor or an exacerbating factor for restless legs syndrome and sleep bruxism".

My main suggestion is that you may want to increase the Mirapex slowly (by .125 mg every 5-7 days until you get improvement in your condition. If you start becoming tolerant of the higher doses, then you should go off the Mirapex for a week, then try Permax or Requip. If tolerance occurs with these medications, then these Parkinson's disease medications may work well with regular drug holidays (2 days off every 2 weeks).

If you do not have much RLS symptoms during the daytime, do not increase (or maybe even eliminate) these daytime doses of Mirapex.

Date: Friday, November 27, 1998 10:59 PM
Subject: RLS

Very interesting information. Never knew such a thing existed. I am in my 30's and can't remember when I haven't from time to time experienced what you are describing. Butterflies, nervousness and electricity in the legs are good descriptions.

I used to think this came from physical activity and upon experiencing those sensations I would fold my leg over on itself. However when this only brought a few minutes of relief, I often took Tylenol. This eventually brought enough relief to fall asleep and during sleep I no longer perceived there was any further problem.

I have never associated this with my preference for having my legs secure during rest (blanket tightly wrapped around legs) or my fidgeting during the day. Just supposed I was "high-strung". Come to think of it, my dad can't stop jiggling his feet. Maybe we do have mild cases of this.

Say, do they know how this effects circadian patterns? I function best on a later clock than most and am just curious if this has ever been shown to be related to RLS!

Thanks!

Medical Reply

RLS can affect your circadian rhythm, as it gets worse during the evening and prevents you from getting to sleep in the evening. The RLS symptoms tend to ease off in the early morning hours, thus many RLS sufferers can often get better sleep during the early morning to late morning. This may explain, in part, why you have your sleep pattern.

Date: Saturday, November 28, 1998 6:45 PM
Subject: Children with PLMS?

Hi, I have read many of the posts here and on other web sites and it seems to me that most of the people who suffer with this disorder are middle aged. Have you ever heard of this disorder in children?

I have a four year old son who constantly twitches in his sleep. It isn't necessarily limited to his limbs, though. His muscles tense and twitch in his fingers, ankles, toes, legs, arms, neck, buttocks, shoulders, etc. It seems as though there is no muscle that is not unaffected. And this twitching occurs at least every minute. This occurs when he is napping, as well as when he sleeps for the night. He doesn't wake from this continual movement, but I do find that he takes one "power nap" during the week, where he will fall asleep around four o'clock in the afternoon, and not wake up until the morning.

I really am at a loss -- I have had many people observe him sleeping, including a couple of preschool teachers, and no one has ever witnessed anything like this with other children.

Does this sound like it could be PLMS? And if it does, is there any urgency in contacting his pediatrician? His next yearly checkup will be in January, and I thought I would approach the doctor about this situation then.

Thanks for any comments you may have,
Kim F.

Medical Reply

RLS and PLMD have both been documented in children. It is however, very difficult to decide from your description whether your son has PLMD or not. Sometimes when a limb jerks, it may seem like the rest of the body is shaking also. If the whole body truly twitches, then it is unlikely to be PLMD.

It is difficult to say how urgent it is to get to your pediatrician to discuss this case as we do not know what disorder is affecting him. It is certainly worth a quick call to his doctor and then he can decide on how best to pursue this case.

Date: Sunday, November 29, 1998 11:14 AM
Subject: Provera and RLS

Thank you for all your good works. I am a long-time RLS sufferer who found some relief w/ the Klonopin and Vicodin regimen and also lots of exercise and weight-lifting. (I am a nearly 60 year old female.) Then 4wks ago I had a complete hysterectomy (also 12 lymph nodes removed, all negative) which revealed endometrial cancer w/ probable vascular involvement. For this last condition I have been taking Prempro (.625mg estrogen and 2.5mg medroxyprogesterone) for 3 mostly awful weeks..

About 5 days after surgery the RLS came roaring back. I am depressed and generally sleepless. Is it too early to tell what's going on?

Is there any evidence that Provera is bad for RLS? Is there an antidepressant I could try?

Thank you for any help you can give me,
Anne G.

Medical Reply

We have heard of female RLS sufferers getting worse with menopause and when going on or off the post menopausal hormones. Sometimes a change of strength of the hormones may be helpful (PremPro comes in different strengths or the estrogen and medroxyprogesterone can be given separately in different doses). It is best to go off of the hormones for a few weeks (if that is ok with your doctors) to see if that is really the cause of your worsening RLS.

Another possibility is that the surgery may have somehow triggered your RLS. We see this after any trauma to the body (especially back/spine surgery).

If you are still having trouble after making a hormonal change, then consider adding Mirapex to your regimen. I would not use the antidepressants until you see how you feel with the RLS well controlled and with you sleeping better. The antidepressants will worsen RLS as often as improve the condition.

Date: Sunday, November 29, 1998 6:30
PM Subject: Buspar

My dentist is considering Buspar for pre-procedure anxiety (nothing else has been effective). I noticed the following on the literature:

"Because busprione can bind to central dopamine receptors, a question has been raised about its potential to cause acute and chronic changes in dopamine-mediated neurological function (e.g., dystonia, pseudo-Parkinsonism, akathisia, and tardive dyskinesia)." What do you think? Have you heard of incompatibility problems?

Recall that I am currently on Mirapex for RLS.

Keith L.
Columbus, OH

Medical Reply

The concerns mentioned are relevant only for Parkinson disease patients who have a deficiency of dopamine in the brain. RLS patients have not been documented to have this dopamine deficiency and do not seem to get the movement disorder medication side effects of Parkinson's disease patients (dystonia, tardive dyskensia, and akathisia).

As far as interacting with your Mirapex on the short term, one dose or so for a procedure should be no problem. You might need a mildly higher dose of Mirapex for your RLS that day, but no other ill effects should occur.

Date: Tuesday, December 01, 1998 1:05 PM
Subject: methadone for RLS

I am a 42 year old female with "profound" RLS for 25 years (diagnosed by sleep study). I am currently taking Methadone for control of symptoms. I am using this medication after many, many unsuccessful trial of other medications for my RLS. Unfortunately, I am now addicted and took my last dose yesterday. I want to get off of this medication. My dose is too high and it is too difficult to get.

I have a prescription for another opiod.  Will it help my symptoms and control the withdrawal from the methadone. I have been advised by my physician to take the Tylox with Baclofen. What is your opinion? I am terrified of withdrawal symptoms.

Thank you.
CEP

Medical Reply

Methadone can be a very useful agent to treat RLS, but like all the narcotics addiction and tolerance must be avoided. Changing to Tylox (5 mg of oxycodone with Tylenol 500 mg, the same as Vicodin) just avoids the real problem of methadone addiction and replaces it with Tylox addiction. All the narcotics are somewhat interchangeable at similar potencies for addiction and tolerance. One to two Tylox would be quite similar to one methadone, and there is no reason to think that you would not just use the comparable Tylox dose to continue your addiction. In addition, Tylox has the Tylenol (acetaminophen) component in it, which is not helpful for RLS and can thus only cause toxicity if taken long term (especially at a few per day).

Baclofen is a muscle relaxant used in Multiple Sclerosis that has had limited success in RLS patients.

Methadone can be used safely, but the dose should not be kept at a level where minimal RLS symptoms are still present. The problem is when you overshoot the treatment goal and extra medication is taken which is not needed for symptom control, addiction becomes more likely. Many patients like to get rid of all the RLS discomfort by adding just a little more medication than is actually needed thus causing the above situation. Also, by taking regular drug holidays (2 days off every 2 weeks), addiction becomes very unlikely.

As to what you should do now; if it is possible, try to taper your dose of methadone slowly. You can stop tapering when you have about 5-10% of your RLS symptoms back. You may then consider taking one of the newer drugs (Mirapex or Requip) and see if you can get decreased RLS problems with this treatment. If you do get improvement, then you might consider tapering (very slowly) off of the methadone completely. If this is too difficult with this regimen, there are addiction specialists who can help.

I have had patients who have become addicted to narcotics (and no other RLS medication helped) who I have been able to get back to acceptable doses that just control 90-95% of their symptoms without tolerance and addiction continuing. We sometimes find that Ultram can be used for drug holidays, as it does not seem to have cross tolerance (and addiction) with the opiates.

Date: Wednesday, December 02, 1998 5:07 PM
Subject: Remedy for RLS

About a year ago I began making root beer floats for my husband & myself out of diet root beer & frozen yogurt. I began to have heart palpitations & RLS almost immediately. Since I have a minor heart problem, mitral valve prolapse, I take heart medication, beta blockers, regularly for palpitations.

When the problem flared back up after 20 years of being under control, I was understandably concerned. After about 2 months of this and doubling the medicine dosage with no luck in controlling the problem, I began to realize that the "jitters" in legs & heart began at the same time as the new diet treat. I immediately stopped the floats & the condition cleared. I attributed it to the aspartame (artificial sweetener) in the diet drink and made every effort to avoid any further contact with that food product.

Recently, the RLS reappeared & I began to look to my diet again for a possible answer. I had been enjoying some Nabisco pecan cookies with milk just before bedtime. After examining the label, the only ingredient that could be chemical was annatto. A quick call to the Nabisco consumer "hot-line" confirmed that annatto is a chemical that gives food a yellow color - and this ingredient had also been in the frozen yogurt I was eating in the float.  Again, I discontinued the food & the RLS disappeared.

Fellow RLS sufferers (& mitral valve prolapse too!) might be wise to examine their eating habits for foods and/or artificial ingredients that could possibly be causing or aggravating their condition.

I have since tried both aspartame & annatto separately & sure enough, the symptoms returned. Annatto is in many food products, I have learned, so read labels carefully if you suspect you are sensitive to this chemical. It certainly worked for me!

Medical Reply

Thanks for your letter. We will post it on our site to see if it can help others.

Date: Wednesday, December 02, 1998 8:11 PM
Subject: New Symptoms PLMD/RLS

Hi- I am a 28 year old female with PLMD that is normally well controlled. It never hurt per se, but caused severe daytime sleepiness during my h.s. and college years, and has been well controlled with temazepam and Sinemet for about 5 years.

I went to NY in an airplane over thanksgiving over the weekend, and had a great time...but on the plane I have noticed over the last few years that I have a lousy reaction to being confined in enclosed spaces- I get "the crawls" I call it....my legs get crawly feelings that have some pain mixed in...epecially along the sciatic nerve.

well, it's been two days since I got back...usually the crawls go away. This time they haven't and I am really annoyed.and it's in my hands and my legs....I'm on a new job that is going into crunch mode on a project and I need to concentrate. My hands ache and hurt and buzz. My legs ache and feel stiff and the only time I feel good is when I am walking.

As I've been thinking I have also noted that my legs fall asleep pretty often- especially sitting in hard chairs or on the floor...all the way up to my butt. I don't know if this is part of it.

I know these are classic RLS symptoms. What can I do? Will they go away? I am really frustrated.

Thanks. Sincerely,
Robin S.

Medical Reply

You may be having two different problem occurring concurrently. The "crawls" may be worsened RLS, but the painful sensations and numbness in your sciatic nerve area (buttocks and legs) are likely due to common sciatica. This problem gets worse with pressure on the sciatic notch area (the dimple in your buttocks) when sitting (especially on hard surfaces) for prolonged periods. It can last several days but usually responds well to keeping pressure off the sciatic notch and anti-inflammatory medications.

Your RLS complaints (the "crawls") have likely gotten better as usual. See your family doctor for further treatment of your sciatica problem if necessary.

Date: Thursday, December 03, 1998 1:05 PM
Subject: When Parkinson's Drugs Fail . . .

I've written to you for advice several times before. I continue to hope that one day I'll write again and tell you of my success, but I'm not there yet. So, if you could advise me again, . . .

I have PLMD (but not RLS). To date, I've had 4 polysomnograms (sleep study), and I'm scheduled for a 2-night polysomnogram in February. It seems that the results have not been 100% convincing. But my doctors think I have PLMD, and I agree with them. So I hope the diagnosis won't prove to be a problem.

What IS a problem, though, is my seeming inability to benefit from many of the drugs for RLS & PLMD. Over the past 2 years, my doctors have prescribed 3 of the Parkinson's drugs: Bromocriptine, Permax, and Mirapex. I've tried them in every possible dose, tried all sorts of drug holiday schedules, and tried them in conjunction with sleeping pills. I'm taking the Mirapex now, and it's failing after only about 6 weeks; in another 2 weeks or so I expect to be a zombie again.

My doctors are EXTREMELY reluctant to try the opioids. I understand, but I don't know what else is left for me to try.

I'd sure like to know what you folks suggest I do at this point. As I always tell other RLS/PLMD folks, "Nobody knows as much about this as our friends in California."

Thank you kindly,
Mike

Medical Reply

There is no reason to even consider the narcotic medications as they are only useful for RLS, not at all for PLMD. It is surprising that you have problems with tolerance developing to both Permax and Mirapex (they have been shown not to have cross tolerance). If the Mirapex was working for almost 6 weeks, then you know you are on the right track of medication for treatment.

What you might try is drug holidays of 2 days off your drugs each week or two. If this does not work, then you may consider changing from Permax to Mirapex then to Sinemet every 2-4 weeks. This might give you the best part of the positive effects of each drug without giving you a chance to develop tolerance.

A Reply from Mike

Date: Friday, December 04, 1998 5:15 AM
Subject: Re: When Parkinson's Drugs Fail . . .

Thank you for your quick reply. And thank you for letting me know that the opioids are not for PLMD, but only for RLS.   I'm sorta worried about the rest of what you say. I've been trying different drug holiday protocols with the Parkinson's drugs for two years. I've even tried switching back-and-forth between the different Parkinson's drugs. No success.

When you suggest that I'm on the right track if the Mirapex worked for six weeks, well, all I can tell you is that I've had an almost identical experience with both of the other Parkinson's drugs I've tried--Bromocriptine and Permax. And when I've gone back and tried those drugs again--even after not taking them for a year--I got no benefit from them, only side effects.

Anyway, I think we've already tried the next steps that you suggest. And I think my doctors at the Institute have run out of ideas, too.  If you think of anything else later on, I'd always be happy to hear from you.

Thanks again,
Mike

Medical Reply

Your problem with these medications is somewhat unique. Generally, if a medication works, then is stopped for a year, it should work just as well the second time (unless the disease process has advanced). I have not really come across similar problems in my experiences.

You might still consider trying Requip which is similar (but newer) to Mirapex.

Date: Friday, December 04, 1998 10:48 AM
Subject: No Subject

You mention taking "drug" holidays! I only take 0.05 mg of permax in the evening (which allows me some sleep, but certainly doesn't entirely solve the problem.) Do I need a "drug holiday" and if so, how does it work? I have been on permax for a couple of years.

Marge in Boulder

Medical Reply

Your problem with these medications is somewhat unique. Generally, if a medication works, then is stopped for a year, it should work just as well the second time (unless the disease process has advanced). I have not really come across similar problems in my experiences.

You might still consider trying Requip which is similar (but newer) to Mirapex.

Date: Saturday, December 05, 1998 11:09 PM
Subject: an alternative to Permax needed badly

I have been taking Permax for three years now for RLS. I take four tabs of .05 a day. I take nothing else but Darvocet when my arms ache too.

The problem I have is that this drug just freezes me up..I wake up in the morning just locked in place usually with a horrible tension headache because I have gritted my teeth all night. Is there any OTHER drug currently being successful that I could possibly get my neurologist to prescribe?  I am in chronic pain because of all of this. RLS is BAD enough without living with all the extra pain.

Can you please help?????
David F.

Medical Reply

You might do better with Mirapex. The 0.125 mg tablets are more or less equivalent to the Permax .05 mg tablets, but may work better in some patients who are not doing well with Permax.

If Darvocet is not taking care of your RLS pain, then Tylenol with codeine or Vicodin may provide much more relief. Just make sure that if you need to use narcotic medications every day, that you should take regular 2 day drug holidays every 2 weeks.

Date: Sunday, December 06, 1998 2:55 PM
Subject: RLS

I'm a new computer user.  I just found your web page and read some of the many of the letters written by other RLS patients and your replies. I'm 51 now, my husband started telling me 30 years ago that my feet and legs twitched and jerked when I slept.

It didn't bother him, or me, because he worked steady after midnight. However, when he switched to day-turn about 7-8 years ago, he said I needed to see a doctor as I was keeping him awake at night. My neurologist started me on 0.5 Klonopin. The next few years, my symptoms became worse, I began waking myself up at night from the spasms and twitching, and the dosage was eventually increased to 1.5 mg.

Things continued to deteriorate plus my arms and hands also began to exhibit symptoms, I found myself additionally on 0.5 Sinemet, then eventually to 1.5 mg Sinemet PLUS the 1.5 Klonopin. I didn't like the idea of being on the  Klonopin which is addictive, and however unwise, I stopped taking it cold turkey and spent several months with very little sleep, all the while becoming more and more depressed and dreading bedtime.

My symptoms are now worse, it feels like popcorn popping in my legs and the RLS onsets any time I'm sitting in a somewhat relaxed mode, even at work (I'm an office supervisor). My neurologist thinks I need back on the Klonopin but gave me a week's trial of Neurontin and I'm supposed to call him in a week and let him know how things go.

With so many seriously ill people depending on him for care, I hated to bother him with what I thought he'd perceive as so trivial. Maybe now I can talk to him.

Thank you for 'being there',
Catherine W.

Medical Reply

It sounds as if your RLS/PLMD is getting quite severe now. Sinemet (your dose is incorrect on the Sinemet as the usual dose is 2 numbers, such as 25/100) is only good for mild RLS/PLMD as significant trouble may occur at higher doses (more than 2-3 of the 25/100 tablets).

Mirapex, Permax and Requip (the other Parkinson's disease drugs) work much better for severe RLS and are much preferred in cases like yours. The chances are much better that you could control your RLS symptoms with the above drugs with little risk of side effects.

Xanax or Ambien are much better choices for nighttime sedation than Klonopin as they have a shorter half-life and addiction and tolerance can easily be prevented by taking 2 day drug holidays every 2 weeks.

Consider a narcotic preparation to help you with the really bad times and for drug holidays from the sedatives. Make sure that you do not take the narcotics regularly (or else you will need drug holidays on these also).

A Reply from Catherine W.

Date: Monday, December 07, 1998 3:49 PM Subject: Re: RLS

Yes, you're right, don't know what I was thinking of. SINEMET 25/100 AND SINEMET 50/200 in the evenings. I will go over your recommendations with my neurologist tomorrow, thank you so much. It's 6:30 p.m. here, and the spasms have started already, it's really quite maddening. Thank you again.

Catherine W.

Date: Sunday, December 06, 1998 8:34 PM
Subject: RLS and Brain activity

I have just read the letter from Henny S-K from the Netherlands about games etc when having RLS. I found out 3 years ago when I was having RLS around the clock that playing Solitaire would make the symptoms go away for that period. At that time I would be visiting my daughter and Solitaire was all I knew how to do.

I have received the November issue of Restless Legs Syndrome Foundation,Inc. and they have an article that Dr. Mark Hallet at NIH, has found abnormal excitability of certain spinal-cord mechanisms in people with RLS. This is a crucial finding because it points to the strong hypothesis that RLS originates in the spinal cord as opposed to in some part of the brain. I mentioned this to my neurologist when I saw him last week and his reply was that he had long suspected this.

Now my question is why is RLS better when playing Solitaire or working on computer? if activity is in spinal cord.

Betty J.,
Southeast Missouri

Medical Reply

It is a little more complicated than what you have written. What has been recently found is that the flexion response of PLMD is generated by an increased spinal cord response. This may, however, be due to a decrease in the inhibitory control of the brain on the spinal cord. For example, in patients who have had a stroke, a part of the brain is destroyed and the result of the lack of the brain's control is an increased knee jerk response (and other different or increased reflex responses).

Therefore, even though the abnormal response is coming from the spinal cord, it may be due to a problem in the brain. There is evidence of differences in the brains (cerebellum and thalamus) of RLS/PLMD patients when studied by special scans. This may be why when you play solitaire that you are likely causing your brain to do something that inhibits your spine from reacting (that is my best guess).

The final answer will likely be more complex as you can see, but we are waiting for more studies to help us.

A Reply from Betty J.

Date: Monday, December 07, 1998 12:19 AM
Subject: Re: RLS and Brain activity

Thanks for your prompt reply. I know my knowledge of medical problems are very limited. But just had to put my 2 cents worth in.

I wrote you on July 4th about my RLS problems and that I was taking Neurontin for nerve damage in feet and Zanaflex 4 mg at bedtime for RLS but still can't sleep.

You suggested Xanax but I found that I was still drowsy the next day. My pulmonary doctor is into sleep disorders and he suggested Klonopin which is doing the same thing I was reading earlier tonight when I felt RLS coming so that when I came to computer and clicked on your website which I hadn't read for some weeks. 

Keep up the good work it helps to read that someone cares.

Betty J.
Southeast Missouri

Medical Reply

If the Xanax caused you to be drowsy the next day then consider Ambien (5 or 10 mg) which at the correct dose rarely results in daytime sleepiness. Klonopin is actually much longer acting than Xanax (or any other sedative) and has a very high percentage of daytime sleepiness in RLS patients.

I cannot find Zanaflex in my PDR, but if it is a sedative it might interact with other sedatives and cause increased daytime sleepiness.

Another Reply from Betty J.

Date: Tuesday, December 08, 1998 8:35 AM
Subject: Re: RLS and Brain activity

Zanaflex (Tizanidine) is a muscle relaxant which my neurologist gives me for RLS. It or something is working very well.  I can be reading in afternoon or evening and it will start I will get up and go to grocery store etc. and walk it off or sit at computer but this doesn't happen often. I have been taking it for about 7 months along with Neurotin up to 600 mg, 3 times per day for nerve damage in my feet. I know Neurotin is on your list of medications so I don't know for sure just what is helping but I am glad of whatever is working.

On sleep--I have tried Ambien and it worked very well but caused amnesiea.   Xanax,Restoril, Prosom,Ativan all cause delayed action of 4 to 6 hours before kicking in and then I was sleepy in the daytime. Last night I tried taking Klonopin at dinner time then one (0.5mg) at bedtime. I woke up at 7:30 feeling great so far. If I can't get Klonopin going for me will try going back to Xanax and try taking with evening meal and be prepared for sleep whenever it comes.

Thanks for your concern.
Betty J.,
SE Mo.

Medical Reply

I would bet that it is the Neurontin that is helping you as muscle relaxants have been very unhelpful in RLS (unless as a side effect, they put you to sleep).

If Klonopin works for you without daytime sleepiness, then it would be alright to use. But do take drug holidays.

Date: Monday, December 07, 1998 1:54 PM Subject: achy legs

My symptoms sound very much like RLS, however, I don't have the desire to move my legs. Instead, in the evenings, I simply get a deep achy feeling in my calves and, sometimes, my thighs. The ache usually subsides by morning, but sometimes I have a feeling of weakness in my legs when I try to walk. Is this RLS?

Medical Reply

The deep achy feeling in the calves and thighs are more likely a muscular problem (strain?). The RLS discomfort is typically inside the leg and not more specific to the muscle areas. It is also invariably associated with a desire to move your limb to relieve the discomfort.

Date: Monday, December 07, 1998 1:41 PM
Subject: restless leg syndrome

I too have been suffering with the so called Restless Leg Syndrome. I went to a sleep clinic to find out what I already knew. At least I do not suffer from sleep apnea or respiratory problems. The diagnosis was to take a drug used by Parkinson's patients, however, I had started taking magnesium and suddenly found myself sleeping...but am back to the same sleeping problems again. I feel like I am going crazy. I go to my family physician this week to see what he suggests. In the meantime it is very difficult to come into work, when I feel like I can sleep without any problem during the day. Does anyone have any suggestions that does not involve mind altering drugs.

Bonnie G.

Medical Reply

There are lots of non-prescription medicine treatments, but most of these work for only a small percentage of RLS sufferers. Check out our RLS Treatment Page and our Non-conventional treatment section.

The Parkinson's disease medications are used at very low doses (about 1/10 the dose that Parkinson's patients use) and can be extremely effective. They usually do not have significant mild altering side effects.

Date: Monday, December 07, 1998 7:18
PM Subject: RLS

My husband had a heart attack and a quadruple by pass in September.   Prior to this he was never on any medication. He is currently on Coumadin, Glynase (he has been diagnosed with diabetes), zocor, and vasotec.

For the past three weeks he has complained of severe pain in his legs that progessively worsens during the evening until he can't sleep. He just had a arterial doppler which was normal. He does take the zocor, but the doctors don't feel this causes the leg pain even though this is one of the side effects.

His doctor just diagnosed his problem as RLS and prescribed Klonopin for this condition. I am curious if many people take this drug for the RLS and if anyone has a listing of the side effects of the medication, and if there are any dangers of combining this with his other medications.

Thank you for your help,
Marsha E.

Medical Reply

Klonopin is the classic sedative medication that is given to RLS patients. I personally like to prescribe Xanax or Ambien as they have a shorter half life and thus have much less of a chance of causing daytime sleepiness. Also, you should take a 2 day drug holiday every 2 weeks with Xanax or Ambien to avoid tolerance and addiction. Klonopin needs 5-7 day drug holidays which are much more difficult to accomplish.

The sedatives (Klonopin, etc.) are alright to use with his medications. They only interact with other sedating medications to cause increased sedation.

Date: Tuesday, December 08, 1998 10:11 AM
Subject: RLS

I have good results with Ultram for treating my RLS however the autonomic side effects are very troublesome, i.e. hot flashes/sweats. And at least twice when I have stopped for a drug holiday the wearing period has been very difficult-I get very depressed, have lots of sweats, ache all over and am very restless.

Now I am back on Sinemet which helps but hurts my stomach and is not as effective. I am a pharmacist and I have tried many different medications with little success. I originally had RLS in high school then it disappeared only to reappear 15 years later.

The last ten years have been very difficult. Even taking large doses of Sinemet I don't get a full nights sleep and adding benzodiazepines only helps for a short time. I also have adult ADD.  Is there any evidence that there might be a relationship between these two disorders? Dopamine is thought to play a part in both, but my Sinemet does not help my ADD.

Any suggestions would be appreciative.
Mark H.

Medical Reply

You may want to consider Mirapex or Requip. The are the newer Parkinson's disease medications and are more effective and safer than Sinemet. There is generally no need for drug holidays from the Parkinson's disease medications.

There may be a link between ADD and RLS. Certainly patients who are not sleeping well from RLS will have difficulty concentrating and display the symptoms of ADD.

Date: Thursday, December 10, 1998 10:48 AM
Subject: Lamisil

I just started taking Lamisil for my toenail fungus. Now, it seems as if my RLS (buzzing feet...) is worse. Is that possible, or have you heard of that before?? Thank You !!

Terry V.S.

Medical Reply

Any medication can cause any side effect. Lamisil is a relatively new anti-fungal medication so it has not been in wide use yet. I have not seen any RLS interactions with Lamisil or with that class of drug in general. The best way to determine if it is the Lamisil, or just coincidental, would be to stop the Lamisil for a few weeks (with the OK from your doctor) and see if the RLS gets better.

Date: Saturday, December 12, 1998 11:46 AM
Subject: RLS and estrogen?

I am 51 and have suffered from RLS all my life intermittently. A year and a half ago I started the Climara patch and natural progesterone. The restless legs increased dramatically, almost every night.

I was taking magnesium which gave me some relief, until it finally dawned on me that the constant diarrhea I was experiencing was a result of the magnesium. So I had to give that up.

Because of changes in my hormone levels, I went off the patch for two months, and the restless legs stopped almost completely. Due to other symptoms such as constant interrupted sleep due to hot flashes, I am now back on the patch as of 2 days ago. And last night I had restless legs all night...another night of horrible sleep, just a different reason.

What is the link between restless legs and estrogen?

My sister, at 70, said her RLS stopped after menopause. She has never taken hormonal replacement therapy. Any ideas?

Judith P.

Medical Reply

Hormones and RLS have a relationship that can be quite variable. Some get better with menopause and other actually get worse (the majority do not have any hormonal effect). I have not yet heard many complaints about RLS and estrogen hormonal replacement therapy.

Date: Wednesday, December 16, 1998 9:02 AM
Subject: Mirapex

If my doctor gives me Mirapex, how should I transition to it from the Permax? How do the dosages compare?

Medical Reply

Mirapex .125 mg is more or less equal to Permax .05 mg. Some patients have just switched over in one step, just substituting one Mirapex .125 mg tablet for each Permax .05 mg tablet without problem. Doing this, however, can cause an increased chance of getting side effects from Mirapex.

The safest way is to discontinue one tablet of Permax and replacing it with just one tablet of Mirapex every 5 days until all the Permax has been replaced by Mirapex. I hope this is clear.

Date: Saturday, December 26, 1998 7:37 AM
Subject: RLS - I think !!

Please can anybody help/advise. I have been suffering from what sounds like restless leg syndrome for the past few years (I am currently 33 and expecting my first child).

The problem has appeared to get worse since becoming pregnant and obviously I can't take any medication until after the birth of my baby. The problem normally occurs in the afternoons/evenings when I try and rest/relax and continues through to sometimes past 3 am. The problem has also stared occurring in my arms and fingers.

Can anybody please advise me as to if there is anything I can do whilst I am pregnant and subsequently after the birth of the baby.

Yours desperately,
Amanda C

Medical Reply

It sounds very likely that you do indeed have RLS. Here is the information on pregnancy and RLS from our RLS Treatment Page:

Pregnancy can cause a worsening of RLS (in at least 50% of patients who have RLS and become pregnant) or be the first time that a patient experiences RLS symptoms. It usually occurs in the third trimester and has been reported in up to 12% of all pregnancies. 10% of women will have their first experience with RLS during pregnancy. The RLS symptoms will usually go away after the pregnancy, then often come back later in life. Various problems such as iron or folate deficiency have been postulated as causes, but the real reason why RLS worsens with pregnancy is unknown.

If the symptoms are severe enough to warrant drug therapy, then the sedative class of medication has been used for treatment (with the approval of the patient's obstetrician). Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages.

Nursing mothers can be treated with Darvocet (Darvon). Small levels of this drug will get into the breast milk, but no adverse effects have been noted in the infants getting the breast milk. Sedatives do get into the breast milk and can cause lethargy in the infants, so this class of medication should be avoided in nursing mothers.

Date: Thursday, December 24, 1998 11:31 AM
Subject: RLS

I can't believe how many people suffer from RLS. I thought I was going crazy. My legs have been twitching and driving me crazy for years.

At first it was maybe 1 or 2 times a month.Lately it seems like it happens 3-4 nights a week.I go days without sleep because I have to constantly move my feet all the time. Is there any kind of medication you can recommend that isn't addictive and doesn't have a lot of side effects?

I would prefer not to take any kind of drugs, especially sleeping pills, but I seem to have run out of options. I've tried massages and hot baths before bed but nothing seems to work.I would appreciate any information or suggestions you might have.It's good to know that I am not alone.

Debbie W., age 26

Medical Reply

The Parkinson's disease medications (Mirapex, Permax, Requip) are not addictive and are generally well tolerated when taken at the low doses used for treating RLS. These drugs work very well in a large majority of RLS patients.

Date: Wednesday, December 23, 1998 11:29 AM
Subject: Mild RLS

I'm not sure if I have RLS or not. My "weird" feeling is in my FEET. When I'm tired or trying to sleep, it feels like my skin is crawling, and I have the uncontrollable urge to move my feet/legs around - stomp, walk, jump.

I have had these symptoms for as long as I can remember, but didn't think anything of it, until my husband told me that I would thrash and kick my legs around in my sleep - it was becoming a problem. (I stumbled across RLS in a friend's sleep disorder book.)

My legs are very sensitive when this happens, and I try to take a massage, but sometimes it helps, sometimes it's unbearable. It's obviously a mild case, but it happens most when I'm very stressed and/or very tired. I have a foot massager that heats up, and the heat seems to work. My feet have very high arches, and may contribute to the problem, so I've learned to get arch supports for all of my shoes, and that has helped some.

I was just wondering if this would also be considered RLS, even though the major part of my symptoms are in my feet? Or should I ask my doctor to examine me more closely?

Thank you for your time.
Cyndi

Medical Reply

Your problem does sound like RLS. The weird feeling can be in any limb, or part of a limb. The hallmark of RLS is the need to move the affected limb in an attempt to relieve the symptoms. It is never a bad idea to have your doctor exam you for other possible problems, but it is most likely that he will find nothing.

Date: Sunday, December 27, 1998 5:54 PM
Subject: restless leg syndrome

I have RLS and believe me I sometimes time go nuts. Once in awhile it happens in the day time and I need some help.

My "so called" doctor looks at me as if I'm crazy because it happens to me at night every night.  I can't sleep and get up and walk around which helps.

Please help!
Sharon H.

Medical Reply

Please check out our RLS Treatment Page for more information on treating RLS. You may also want to find another doctor who is more versed in treating RLS. It is often helpful to go to an RLS support group meeting where others in your area will know of good RLS doctors. Check out the RLS Foundation's web site and visit their their list of support groups in the United States.

Date: Saturday, December 26, 1998 8:51 PM
Subject: Medication 

Just wonder if you have heard of anyone who has developed headaches from the medication Sinemet? After taking it for 4-5 years for RLS,  I have started to wake up with a headache after I've taken a pill in the evening.

I'm quite sure it is from the Sinemet. It worked so well for the RLS and now I am back to square one. I need to find out if any of the other Parkinson's disease drugs have the same chemical in them, that may be causing the headaches.

Any help would be appreciated.

Sincerely,
Maggie O.

Medical Reply

Headaches are a common side effect of many medications. It is however, very likely that you will not get the same side effect from the other Parkinson's disease medications such as Mirapex. Sinemet is a pre-drug of dopamine, while Mirapex is similar in action to dopamine.