Patient Letters on RLS Symptoms and Remedies, Page 8

Patient letters on RLS symptoms and remedies- Page 8


Kicking RLS/PLMD Patient

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



Date: Thu, 13 Nov 1997 15:34:51 +1000
Subject: RLS

I've spent my entire life in complete frustration over RLS. Essentially, in the last 2 years, I've been desperately trying to figure out a suitable source of medication. I'm very much into natural medicine...basically, I don't want to harm my body with massive doses of chemicals, so I sent my complaints to my chinese herbalist. Unfortunately, his initial remedy was unsuccessful, however, on my second visit ... he gave me the cure!

Ten minutes before I go to bed each night, I lie on a hard floor (without a pillow), and put my legs straight up against the wall. Okay, so it felt a little awkward at first with all the blood draining out of my feet, but ever since, I've been able to get to sleep straight away, where as previously it had taken me a couple of hours (due to RLS). To make it even better, this procedure also prevents blood clots, and is great for blood circulation. I don't know if you can understand how relived and ecstatic I was to finally find a way to cure my RLS without doing any harm to my body!

Medical Reply

Thanks for your letter. RLS sufferers have lots of different exercises and activities that help their condition. We are not sure why this is the case, but we are always interested to find non medicine treatments that may help relieve RLS symptoms.


Date: Thu, 13 Nov 1997 13:44:19 -0700 Subject: Message from internet

I attended my first RLS Support Group meeting this morning. Saw an ad in the paper a couple weeks ago so I went. Didn't learn much I didn't already know but a couple things came out that I thought worth mentioning to you.

To begin with everyone there was 60 and older. Not surprising since I live in a retirement community. 32 people present, about 65% female. The meeting was chaired by a woman who is a retired RN and from listening to her I got the feeling she has made the study of RLS he life's work. Very knowledgeable. She threw out one stat that by itself almost made the trip worthwhile - - - - "The first known case of RLS was reported in the year 1687". How's that for an ice breaker at an RLS cocktail party?

No one there (including my RN) had heard of Mirapex. So I got to be an instant "star" at my first meeting.

They put up on an easel the names of the various drugs used by those people present. It contained the usual drugs. The interesting point here (or a least to me) was how individualized the treatment has to be. A drug that worked for 4 or 5 people would not work for the rest and so on down through the list. Hot baths worked for some and not others. The same for exercise. Sinemet led the list as the drug that worked the best for the most.

There were only 3 of us who were Sinemet veterans and were going through the augment and rebound phase.

Incidentally, since I started on Mirapex and am trying to cut down the Sinemet I am shaking like a leaf. I couldn't even put a golf ball on the tee yesterday. Same with trying to play poker a few nights ago. Couldn't deal. Finally just quit both.

Nothing concrete yet to tell you about Mirapex. It does stop the pain but I'm only allowed 3 mg a day so am still dependent on the Sinemet. Don't know when or if the Doc will increase it.

Will write more when I know anything.

Wray S.

Medical Reply

Thanks for the update. You are quite right about how most of the RLS treatments work only on a small percentage of the RLS sufferers. That is why when someone states that he has found the cure for RLS, it really means that a few other patients will benefit , but likely the majority will not.

Subject: Restless Leg Syndrome

All of the personal stories I have read here are all so familiar. I developed RLS when I became pregnant with my first child. I was 32 at the time. I slept approximately 3 hours per night. 11PM till 1 or 2AM every night during my pregnancy. I played a lot of solitaire! I complained about this to my obstetrician a number of times. He basically laughed it off and said "welcome to pregnancy",ha ha. Well, I went about doing my own research and diagnosed myself. I gave birth and RLS went away. I got pregnant 13 months later with my second child and it's been with me ever since, with a vengeance. Finally, I changed family doctor and was referred to a neurologist and I told him what I thought I had. He told me I was right!!!!!! Incredible...he told me he was surprised that no one else in my family had it as it is often hereditary. It wasn't till about 3 weeks later, it hit me, my mother suffered from this most of her adult life and didn't know it. She did suffer from severe arthritis in her knees and we chalked it all up to that. How unfortunate she didn't know she could be diagnosed and treated for this. She has since passed away from a stroke. I have been on Clonazepam 0.5mg per night for one year and it has been very effective for me.

I am wondering if anyone else with RLS also suffers from psoriasis. My mother had psoriasis and RLS and so do I. I have 2 other siblings with psoriasis but no RLS at this time. My psoriasis is mostly focused on my legs, below the knees.

My psoriasis is kept under pretty good control by taking Phototherapy treatments at a local hospital. This treatment is known as PUVA and makes my skin extremely dry. I take a drug known as an Oral Psoralen 1 hour before being exposed to light. The dryness certainly doesn't help RLS.

My RLS started in my legs but it eventually did move to my arms. My husband understands but doesn't really. He seems to think that if I exercised more it would help. Trust me, it makes it worse, in my own experience. If my kids or husband happen to rub me on the limbs while we are watching TV, reading a book or just relaxing. It will immediately start the sensation of RLS. If they just place a hand on me without movement I am fine. The best way for me to describe my RLS is: It feels like a short circuit in my brain. I can feel it shifting into gear. It starts with the worm effect, creeping,crawling down my whole body till it reaches my feet and then the jerking starts, and continues in about 20 second intervals.

I always feel like I could have a big mid day sleep. I have done so a couple of times. Never again! The most bizarre, frightful type of nightmares set in and they are hard to shake. I don't know if this is the medication or the RLS.

I am a 40 year old female, working mother of two with a high stress job and live with psoriasis and RLS.

I feel like I could write a book on these two conditions.

RLS sufferer in Toronto, Canada

Medical Reply

Thanks for your letter on RLS. Your story is very typical, especially the lack of physician help initially. You may be sleepy in the daytime due to the clonazepam, which has a very long half life. Xanax may work as well without causing any daytime sleepiness.

There is no known connection between RLS and psoriasis. 

Date: Wed, 12 Nov 1997 01:35:16 -0500 (EST)


I have had RLS/PLMD/nocturnal myoclonus/head rocking since I was born. I remember my mother telling me that I rocked myself to sleep from little on.

At age six I started dragging my right leg behind me. My mother took me to my pediatrician and he ordered x-rays. The x-rays showed nothing so the doctor said to get some good orthopedic shoes although I had nothing wrong with my feet. He also said that I was experiencing growing pains. To this day children are being diagnosed this way , and being put on Ritalin for a hyperactive problem. As I grew up I suffered tortuous nights rocking so terribly that I woke up the whole house. My parents had to bang on the floor from there upstairs bedroom to mine below in order to wake me up and turn over on my side and try to sleep again. This went on for years without any results from doctors that I saw. I was in boy scouts for a few years , and when we went on camping trips I was up all night walking around the campsite crying until 4:00 in the morning when I could finally fall asleep only to get back up at 6:00. I did this for so many years. I am now 36 years old and can't work anymore because of the severely of my symptoms.

I have been hospitalized 3 times in the last 4 years for the following.

1) paralyses below the hip
2) heart Irregularities( sinus tachycardia ) 48 hours straight
3) chest pain ( sinus tachycardia ) 30 " " " "

I do experience peripheral neuropathy, severe back pain for which I have to take a lot of pain medication. I have to take 5 different medications daily. 8 pills at bedtime. I am desperately looking for anything that might help. I have brought a son into this world , and have passed this on to him. He is all over the bed and has fallen out a few times. I have pillows down so as to catch him when he falls. I feel so bad for him. What have I done-- I should have never taken the risk. I just hope we can somehow find a cure for this problem soon! .I have started a support group in NORTHWEST FLORIDA. I could use all the advise you wish to offer. I have contacted the local newspapers and television stations. I had my first sleep expo tonight 11-11-97

My support group name is GREATER PENSACOLA AREA RLS SUPPORT GROUP. My e--mail address in I would love to here from any of you that would love to talk and share info.

Thanks for listening!


Date: Fri, 14 Nov 1997 20:23:21 -0800
Subject: RLS

Right now I'm experiencing the same feelings I had 11 yrs. ago when I was discovering that my "spazz attacks" had names...anxiety disorder and panic attacks,new words for me and my family back then. I received tremendous help as a research patient at USC Med. Center. After spending hours on an airplane earlier this week (and going crazy) something I'd heard in the past caused me to type in restless legs on my computer and here is all this information. I've had tears of relief and fear that my symptoms may worsen as so many others have written of.

When I was a child my dad called my condition "weak-knee-itis".Do you know of anything I may do now to perhaps help my "itis" not worsen? I am female,42 yrs. old. I have scoliosis and take Xanax infrequently for panic. Any connections?

My symptoms don't include pain, but a very uncomfortable urge to move my legs,especially my ankles and calves and sometimes my arms. I can't just sit and enjoy anything in the evenings. Sorry for rambling on but I've never known this is something I can talk about without sounding looney.

Thank you for this forum

Medical Reply

Pain is not always associated with RLS, but the urge to move your legs is present in all patients. The scoliosis and panic problems likely have nothing to do with RLS, unless the panic is caused by the RLS (which would then be improved with Xanax). There is nothing to do to help prevent the RLS from worsening. The RLS treatments just help relieve the RLS symptoms.

Date: Fri, 14 Nov 1997 18:26:29 -0500
Subject: Help for RLS

My mother suffers from Restless Legs Syndrome and would like to use Q-Vel but cannot find it. Has it been taken off the market or can I purchase for her somewhere? Any help would be appreciated. Thank you. Brenda

Medical Reply

Q-Vel is quinine, and is now purchased only by prescription. It is only recommended for the treatment of Malaria, as side effects have curtailed its over the counter use. Quinine is rarely helpful for RLS.

Date: Sat, 15 Nov 1997 22:33:53 -0500 (EST)
Subject: RE: Severe pain

Dear Doc, I've had RLS and PLMS for quite awhile now. It really flared up after 2 knee surgeries. I have been taking Klonopin 2mg and 1 Vicodan for the symptoms and was doing extremely well. Then all of a sudden I started having severe pain in my lower legs not relieved even by taking extra strength Vicodan 3 times a day.I wake up with this pain and I go to sleep with this pain.

My primary ordered blood tests for everything imaginable, and I had a venous doppler ultrasound done too. Everything is negative. He referred me to a neuro.

Will the neuro be able to treat this pain and keep me comfortable so I can sleep and walk more than a few feet before having to sit down? Or will I then have to go on to the pain clinic?

Thank you,

Medical Reply

It is very difficult to answer your question without seeing you and examining you personally. The pain could be from RLS or many other possible problems. Depending upon the problem, the prognosis may be very different.

Date: Thu, 20 Nov 1997 18:38:30 -0800
Subject: RLS cure

I recently found the RLS support page. And thought you might be interested in what I found to keep my RLS problem at bay. I have had this problem at least since I was a teenager. Up until 2 years ago (age 42) when I had crawly legs in bed at night I would get up and exercise. I am not sure what you call it but it is lifting your heals up and down standing on the balls of your feet.

Then I was in an car accident. Well my legs would not let me sleep at all any more. I could exercise for an hour and still not get peace. I went like this for about 2 years. Frantically seeking a cure. I told my doctor and he wrote it in my file and that was it! No suggestions or anything! A couple of months later I went to a he at least sympathized with me and had me try his calcium tablets. He had me taking 1200 mg. each day on an empty stomach. I had read in Prevention Magazine about 15 years ago to take dolomite for restless legs. I had already been taking lots of calcium and a multi-vitamin to help my body recover from the accident. The 1200mg a day kind of helped for a while but then it got bad again.

I bought a Rodale Press book called "New Choices in Natural Healing". It had Restless Legs listed. There are many types of methods to try from juice therapy to yoga. One jumped out at me. Food therapy, increase intake of folate or folic acid. Found in dark green leafy vegetables. I went to the health food store and asked them what they had. They pulled out their book, looked up folic acid and found some strange concoctions they didn't have. The last item was BREWER'S YEAST, BREWER'S YEAST, BREWER'S YEAST.!!!!!!!!!!!!!!!!!!!!

It said this was rich in folic acid. I knew they had that. Give me some! Also, I found a product on their shelves called Nature's Plus-Mixed Vegetables,Phyto-Nutrient Complex,a highly concentrated cruciferous green leafy and root vegetable extract using broccoli, SPINACH, carrot and cabbage.

I took these home and tried them. As soon as I took the Brewer's Yeast I felt different. My legs were almost relaxed. I have been taking this regime for 3 months now and have had night after night of restFULL SLEEP! SLEEP! SLEEP! SLEEP! and my husband has now been getting a good night's SLEEP!


9 tablets a day, 3 after each meal of "Mixed Vegetables"

3 heaping tablespoons a day, 1 heaping tablespoon of Brewer's Yeast in about a 1/2 cup of water (you get used to the taste, especially when it makes you legs happy!). Or you can take it anyway you can get the amount down. I take 1 dose before breakfast, another before dinner,and another just before bedtime.

Now I still can have leg trouble, but if I keep my legs warm in the evenings and do a little exercise I can work it out fairly quickly. Occasionally I will have trouble after retiring and if I can't exercise it out. I will take another dose of yeast and sometimes combine it with another 3 tablets.

I am so relived and hope this offers hope to others, JUST TRY IT. I am a small person so the doses could vary but it's at least better for one than taking drugs! I notice when I get stressed I need more yeast. I believe it's considered part of the B vitamins, which are water soluble so you can't take too much.


Paula H.

Medical Reply

Thanks for your letter on your cure for your RLS. This may be helpful for other RLS sufferers. Unfortunately, what works for some RLS patients, usually does not work for most RLS sufferers.

Date: Sat, 22 Nov 97 05:23:51 UT
Subject: Restless Leg Syndrome Solution For Me

I take Trazodone 50mg to aid in my sleeping. To my surprise I found that it eliminated my restless leg problem for 2 or 3 days. Also, I now urinate more freely and completely. Hope it works for someone else.

John L.

Medical Reply

Thanks for your letter. Trazodone is an antidepressant which can help or worsen RLS. It seems to be a very individual response.

Date: Wed, 26 Nov 1997 20:29:23 EST
Subject: Permax Reactions

Would like to hear of anyone having anxiety/panic attacks as a result of taking the dopamines (primarily Permax) for RLS. I had these symptoms after running a marathon on Sinemet 7 years ago (apparently dopamines interfere with the body's ability to regulate heat). I had heat prostration followed by anxiety/panic attacks within 48 hours.

Two months ago while changing from Klonopin to Permax, I had similar symptoms which still persist. They lasted a year the first time. I think the dopamine really whack your neuro system. . .like cracking an egg with a brick.

Any advice on how to reverse the damage? I talked to at least 1 other RLS patient who had similar anxiety/panic symptoms on Permax (in the AOL RLS chat room Thursday nights).

Your note on the web under the web search for Permax seemed to extol the virtues of this drug. I think it can be dangerous for certain personality or physical types.

Please. . .would someone respond.

Much appreciated!

Medical Reply

Permax is a very good drug for RLS. However, this drug helps a lot, but not all RLS patients (which is typical of all RLS medications). Permax, like all neuro-active drugs, can have quite varied effects on a minority of patients. I have heard of similar reactions to yours, but luckily, it is an uncommon side effect.

This problem with adverse effects should not stop us from using a major class of RLS medication, as there are very few good medications for RLS and most all the medications have potential side effects. It is unfortunately, impossible to say which personality or physical types will have adverse reactions to Permax, or any other of the RLS drugs.

Date: Thu, 27 Nov 1997 19:53:41 -0500 (EST)
Subject: My Solution to RLS (Drug Combo)

Dear Fellow RLS Sufferers:

I have suffered from RLS since childhood. I am a 49-year-old male who is now under the treatment of a former Mayo Clinic physician. He is now treating me with Permax and Baclofen. This is the first combination of drugs to bring me relief in years. I am considered an extreme case and this combination finally worked for me.

My doctor's name is Baldwin S. in Winston-Salem, NC.
Good luck!

Medical Reply

Subject: RLS Remedy
Date: Wed, 03 Dec 97 13:35:00 PST

My husband and his brother (a doctor) both suffer from RLS, or "crazy legs" as they call it! They are both in their 30's and have suffered pretty much their entire lives. Recently my husband started drinking tonic water when he got a bout of RLS in the night and it seems to have helped enormously. I hope this helps someone else. (Warning - he was drinking tonic water on the plane during a red-eye and was told by a flight attendant that it was not safe to drink large amounts while flying!)


Medical Reply

We will add this to our web site. No idea why tonic water would help, but then we do not know why most of the RLS treatments work.

Date: Mon, 24 Nov 1997 01:32:43 -0500 (EST)
Subject: Restless Legs Syndrome

I have enjoyed reading the letters from other RLS sufferers. I have had RLS since my teens . I am now 47. It has gotten much worse in the last 5 years. I took Klonopin for several years but eventually it didn't work anymore even in larger doses. By accident I found that while taking Vicodin for trigeminal neuralgia, my RLS symptoms decreased almost totally.

I also discovered the RLS Foundation. I read about the use of narcotics in RLS and the low addiction potential if used for this. I discussed this with my internist and I now take the Vicodin with drastic improvement in my symptoms. It has kept me from going crazy. I can actually get a fairly decent nights sleep.

I also have PLMS. I also have RLS daytime symptoms and symptoms in my arms for the last few years. As long as I can use the Vicodin I will as it has really improved the quality of my life!

Reggie in CT.

Medical Reply

You should have no problem using Vicodin on a long term basis. Try to keep the dose at the minimal necessary to resolve about 90% of the RLS symptoms. Also, remember to take drug holidays of 2 days of Vicodin every 2 weeks to avoid tolerance/addiction.

Date: Sun, 30 Nov 1997 00:11:36 -0700

I just want to say that I hope there are some research types out here listening. I have restless leg syndrome and have been very ill with it one year ago Dec 24 1996, I discovered my case seemed to be related to some type of poisoning. It seemed that the poison was leaping out of my skin, like the body was trying to rid itself of the poison. I had every RLS symptom and then some. However, I felt it was something I was somehow unknowingly putting into my body.

I changed soap, shampoo (peppermint scrub), and natural toothpaste. My tongue was even beginning to quiver when I stopped my hormone pills completely. I stopped using the same fabric softener. I spent thousands of dollars in test this year and was given no help at all. I quit hormone pills and have become to start living again. I know this information won't necessarily help men but something was poisoning me and I've gotten rid of a lot of it. Most of it for now.

Sometimes, I feel its not 100 per cent gone but somewhere between 90-95% gone. I read about possible poisoning that gave me the idea and fabric softeners have a log of chemicals and metals. I am already allergic to medals. However, I had medical tests and they showed negative. It didn't make sense either. I still haven't ruled out the possibility that it could have been stress -- but I got rid of my last job and occasionally feel something.

But if it is stress related, I believe we bring it on ourselves. Like I say, I had symptoms of even lumps growing, and now that I've stopped my hormone pills, Estrace brand, I feel wonderful.  I started taking Gensing and B vitamins, calcium, natural water pills and natural thyroid pills. I finally feel better.  I had to show patience at first because it took a long time 90 - 120 days to get them completely out of my system. However, the good news was that within 72 hours, I felt like the poisoning was 80 per cent gone. It took me a long time to get that sick and I knew it would take me a while to get completely better.

Please, I urge anyone out there in research to consider this. If I'm right, perhaps you could get a grant to study this. Thank god I'm finally on the road to recovery. I couldn't have taken much more. I will continue to read and pray that mine stays gone. Also, mine was worse when I didn't get the rest I needed, just like any person whose resistance goes down.

Thanks for listening.
Please feel free to post my thoughts if it will help anyone.

Medical Reply

Many RLS sufferers have started and stopped hormones without noting any effects on their RLS problems. "Cures" such as yours tend to work for a few RLS patients, but are not successful for the vast majority of RLS patients. 

Many RLS patients who have found their personal cures want research to be done into their cure, but the effect has to be consistently repeatable until research is warranted. Thank you for your observations as they may likely help some other RLS sufferers.

Date: Mon, 24 Nov 1997 21:59:08 -0800
Subject: restless legs

My 75 year old wife has severe legs that seems like her nerves are on edge. For past 6 months she has been taking Sinemet which finally gave her a good night sleep. Until yesterday, she had a bad attack and went to prompt care where the doctor told her to get off of Sinemet.

What can you recommend? She is at her wits end. Thanks for any help you can give her!!!

Ed R.

Medical Reply

What type of bad attack did your wife have?? This makes a big difference in what medication can be recomended. There are very few conditions that preclude the use of Sinemet.

Date: Tue, 02 Dec 1997 19:09:33 -0800

Before each big meal, I take a teaspoon of Knox gelatin and a glass of citrus juice. I keep my meals very low on grease. These measures seem to keep my syndrome at a low level, whereas backsliding results in greatly accelerated "itching" and motion. Similar results hold for my wife, who had problems similar to mine until we stuck to this regimen.

I would like to see if it works for others.

Medical Reply

Thanks for your letter. We will post this on our web page and see if others have had the same experience or benefit from your advice.

Date: Thu, 04 Dec 1997 10:33:39 -0800
Subject: RLS

My Mom suffers from RLS the most in our family. She has been put on several medications, which only work for a short time. She has tried Sinemet, Klonopin, Tylenol #3 etc, etc, etc. Her doctor did just give her a prescription for Ambien. Her main problem though is that medications act different on her.

Sometimes the only thing that relieves it is for her to drink a cup of coffee, that sometimes will relax her. I two have RLS and PLMD, however so far for me I can take over the counter medications like Orudis. What I have noticed is that as I get older (I am now 40) these drugs are less effective. Sometimes it feels like if I could just stretch my body out, the feeling would go away. I also have it in my shoulders.

I have three daughters, and it broke my heart a couple of years ago to have my then 7 year old crying that she couldn't hold her legs still. I hope they find a cure soon, for my Mom and Daughters sake. My Mom is in her 80's and wanted to travel and enjoy life with my Dad, but because of her condition, she can't even travel 1/2 to the store. Her "jitters" bother her all day, not just at night.

If anyone can benefit from talking to us, please feel free to e-mail me.

I just needed to get this off my chest to someone who understands... thank you, Debbie

Medical Reply

It sounds as if your mother has tried the three major classes of medications for RLS.  Did your mother take drug holidays from the Klonopin and Tylenol # 3?  If not she may have become tolerant of them and thus rendered them ineffective.

There are lots of good drugs available for RLS and with proper care most RLS sufferers should do well.

Good luck and let us know how your mother does.

Date: Tue, 2 Dec 1997 22:29:05 -0500 (EST)
Subject: restless in Texas

I am a 27 yr old male that has been suffering severely from RLS for about 4 yrs now. The symptoms started after a very bad car wreck in which I herniated a lower back disk. I went to see a neurologist about my back and complained to him of having very bad leg cramps. I told him it felt as though there were people with pick axes in my legs. They start at the knee, dig in my calf, and finally exit my toes.

Lately they have been,"Picking on my arms." The Doc prescribed Ambien to help me get to sleep. The Ambien worked for a long time but it got way too expensive. I went down to Mexico and brought back a huge bottle of Valium. It was a heck of a lot cheaper that the Ambien and seemed to work better. I was using Valium for 2 years until my RLS got worse. I was taking up to six,10mg tabs to get about 5 hours of sleep.

I recently moved to Arlington T.X. and found a new doc that had treated RLS before. He gave me Sinemet 25-100 and Sinemet-CR 25-100. Neither worked. I did not sleep for 4 days and nights during that experiment.

We then tried Klonopin 1mg. did not work. Neurontin 300mg made me have a very bad seizure. My girlfriend said that I kicked her out of bed and started flopping around. She tried for 45 minutes to wake me up and finally she called 911. I woke up in the hospital suffering from cardiac arrest due to the Neurontin.

The doctor didn't believe me until he talked to my girlfriend. We then tried Baclofen {Lioresal} It worked for about 3 days then nothing. I went back to my doctor yesterday and he was befuddled. I asked him if he could prescribe opioids for the pain and Ambien to knock me out. He wouldn't go for the opioids thing but he did give me more Ambien. I took three 10mg tabs to go to sleep last night and only got 4 hrs of sleep.I took 3 more and then got 2 more hours of restless sleep.

I hate taking drugs for this illness but I have tried everything that I was suggested. I flushed the Ambien down the sink last night and I believe I will flush myself down tonight.

Thanks for listening. If you have any suggestions, please make them quick.


Medical Reply

You definitely have problems with getting tolerant to medication. It is very easy to become tolerant to the benzodiazepines (Valium, Klonopin). The doses that you are taking all well beyond the upper limits for both Valium and Ambien. You most likely have never taken drug holidays from your drugs, thus enabling tolerance to occur, forcing you to need higher and higher doses which do not help you any longer.

You should get off all your drugs for a week or two, then try them at low dose while maintaining regular drug holidays (2 days off the drugs every 2 weeks).

The opiods may be very helpful for you, but the big concern would be getting addicted and tolerant of this class of medication, especially considering you previous drug usage.

Subject: RLS&PLMD
Date: Tue, 2 Dec 1997 04:04:47 -0800

I call it wretched limb syndrome! I went THREE months without sleep. I thought I was going nuts.The very most sleep I had in one period during that time was 3 hours.  The rest was caught in 5 to 45 minute intervals.

With the treatment I'm getting, I count it a very big blessing if perchance I should sleep 6 hours through ...which is rare. What I take presently for RLS&PLMD is 200 mg of Meperidine in 50 mg tablets. and 6 tabs. of 0.5 mg clonazepam a day, most of it used during the evening before bed. Occasionally I'm able to save some Demerol for travel. Not often. I also try to save some of the Klonopin for during the day for naps and so forth.

Terri J. H.
I'm 45 and have a six year old to care for!

Medical Reply

You are taking quite a high dose of Demerol and Klonopin. At those doses, there is a real concern about developing tolerance to the medications. Make sure you take drug holidays (at least 2 days off the Demerol and 5-7 days off the Klonopin every few weeks) to avoid tolerance.

Permax would be a good additional drug for you, in order to reduce your need for the more addictive type medications. 

A Reply from Terri

Subject: Re: RLS&PLMD
Date: Sat, 6 Dec 1997 22:40:56 -0800

Thank you for your concern. I have an excellent neurologist who keeps close tabs on me. We tried all sorts of the Parkinson's medications. with very negative results. I became very sick on these drugs including Permax. I also have a lot of very serious medicine allergies ----rather across the board so to say.

Thanks for your suggestions.
Terri J. H.

Medical Reply

It sounds like yours is a very difficult case with complicating allergy problems. Other than trying the the "Secondary RLS" medications, which may or may not be helpful, I have one more suggestion for you. You may want to see if Ultram might be helpful, in which case you would have something that is non-narcotic to alternate with Demerol.

Date: Sun, 7 Dec 1997 22:33:49 -0700
Subject: Status

Thought I'd give you an update on "getting off the Sinemet". It's about as much fun as RLS. Never would have guessed it would be this hard. First off and probably of more interest to you is that Mirapex seems to be doing the job. It definitely stops the RLS pain. However, Mirapex does nothing for the rebounding. At least now I know the difference. For the last couple years I was taking Sinemet for rebounding thinking it was just RLS with a different face.

Am I really that dumb or have others made a similar mistake? That's a serious question?

I've learned that in terms of trying to reduce the Sinemet my body is like a bank. It not only wants the current payment, it wants the two or three payments I missed and is not bashful about letting me know it. It's almost self-defeating. If I've gone, say, 12 hours without a Sinemet, taking two Mirapex's in lieu, it does little good to take one Sinemet. It takes the two I missed in order to feel "normal". So, needless to say, there is a lot of discomfort. I shake, am short of breath, nervous as hell, ache all over and have a severe itch right at the base of the neck or top of my spine.

I give in to it and bring the payments up to date in the afternoons when I'm trying to get a short nap and at night trying to get a couple hours sleep. Otherwise it would be no sleep at all. The rest of the time I live with it. Mayo raised my Mirapex up to 4 mg's a day starting yesterday. I think that will be plenty to keep the RLS at bay. It's this other battle that's consuming me now.

Don't know if these little "status reports" are of any use to anyone. Let me know if they aren't and I'll discontinue. Although, it is kind of nice to be able to tell someone. Also, it forces me into putting random data into some kind of order. I know that helps me because I understand my situation better after I've told you about it. See what no sleep for 10 years will do to you.

Wray S.

Medical Reply

Thanks for the update, which are very helpful as our experience with Mirapex is still very limited. The rebound problem with Sinemet can be very difficult as you have found out recently. That is unfortunately not an uncommon problem, although most patients (but not all) seem to do better with slow withdrawal and replacement of the Sinemet.

One would have thought that by this time (with Mirapex at 4 mg per day) you would be getting over the Sinemet rebound problem. The other Parkinson's disease medications are not supposed to cause rebound.

Date: Sun, 07 Dec 1997 23:29:29 -0800
Subject: RLS

I am reading the RLS letters because I am curious about my own experiences with the problem. I am not sure if I had symptoms before, but I definitely noticed symptoms shortly after going on beta blockers to control elevated blood pressure (hypertension).

I am a 46-year-old male. There seem to be a LOT of baby-boomers and parents of baby-boomers that are effected with RLS. I don't normally subscribe to conspiracy theories, but could there have been something in the 50's that effected pregnancies? There appears to be two large age groupings: mid 40's and early 70's -- Baby boomers and their parents.


Medical Reply

The common thread between RLS diagnosis in baby boomers and their parents probably has more to do with awareness of the disease more recently rather than any other thing (such as fluoride in the water). Although recognition of RLS is still low, it is much better than 20 years ago when almost no one was treated for the disorder. RLS now has a foundation, many support groups, and even several web sites, so people can realize that they have the problem and seek help.

Most RLS sufferers will admit that they have had the problem for many years before seeking help. Also, the problem does seem to get worse with increasing age. We may have to abandon any conspiracy theories for now (although you never know!).

Date: Fri, 12 Dec 1997 12:37:41 -0800
Subject: What a relief!

Hi, I just found this site and I'm so relieved to be able to find out more about this. I have recently been diagnosed with this weird thing, that I have always referred to as "The Scritchees", just my own little word. I laughed out loud when I read the names that others have used, because I COULD RELATE!!!!!

I also have Crohn's Disease and Superior Vena Cava Syndrome, I am a 48 yr. old female.

Thank you for this site. I am off to explore it some more.

With warmest regards,

Date: Fri, 12 Dec 1997 10:44:18 -0500
Subject: RLS Question?

I just recently contacted my doctor regarding my restless legs. I felt stupid calling her, as I thought that this affliction was considered a minor complaint by the health professions. She immediately put me at ease and assured me this was a real problem. She suggested that I drink quinine water and is also looking into sending me to a sleep clinic for an evaluation.

Is this common procedure for diagnosis? Also, I have a symptom that I'm wondering if it is associated with RLS. My feet get burning hot at night. They itch and burn so bad that it keeps me from getting to sleep. Is this a symptom of RLS or something else altogether?

Thank you for your anticipated response.
Sue B.

Medical Reply

RLS is a clinical diagnosis and does not need a sleep study (evaluation). Many of these patients have associated PLMD (Periodic Leg Movement Disorder where the legs jerk throughout the night and cause such poor quality sleep that the patient is very sleepy during the daytime), which may need a sleep study to see if it is interrupting the patient's good quality sleep.

Quinine water may help only a few RLS sufferers. Bring in a copy of our Treatment Page and perhaps your doctor can help you. If not, then it would be very helpful to see a sleep specialist who is interested in treating RLS.

Hot and burning lower extremities is not an uncommon problem in RLS sufferers.

Date: Fri, 12 Dec 1997 06:28:23 EST
Subject: Message from Leon K. 12/12/97

I would like to bring you up to date on the results of medications I have been taking for RLS as well as the results of the drug holiday that I took. You may recall that I had done quite well on Ultram (50mg) three times each day and Clonazepam (1mg) once a day at bedtime. After about six weeks on the above medication I took a 4 day drug holiday using Codeine (30mg) and Ambien (10mg) as substitutes for Ultram and Clonazepam.

The drug holiday was somewhat difficult and I experienced significant difficulty during the period that I was taking Ambien as a substitute for Clonazepam. The side effects included some difficulty recalling events, dizziness, and difficulty concentrating. The return to Ultram and Clonazepam after the 4 day drug holiday has again proved very successful.

I am about to start a new drug holiday and have started to take the codeine in place of the Ultram. However, I have heard that Melatonin, produced by Solgar and taken in a dose of 2.5 to 3 grams at night is quite a successful sleep inducer and I was wondering whether it would be worth trying this for the four days of my drug holiday in place of Ambien.

I would very much appreciate your thoughts, although as always I would first seek the counsel of my doctor in Denver who has been treating me.

Again thank you for your past assistance. Sincerely,
Leon K.

Medical Reply

Sorry to hear about your problems with your drug holiday. This is often very tough for RLS patients, but is generally worth the effort in order to avoid addiction and especially tolerance of the medications. You may want to consider doing only a 2 or 3 day drug holiday on the Ultram, but the clonazepam (Klonopin) does need about 4 days.

Melatonin may be helpful, but I would be surprised if that alone would alleviate your RLS symptoms caused by withholding clonazepam. Perhaps adding it to Ambien may help you.

A Reply from Leon K.

Date: Sat, 13 Dec 1997 12:23:57 EST
Subject: Re: Message from Leon K. 12/13/97

Thanks for your early response. I am somewhat reluctant to take a drug holiday for shorter that 4 days from the Ultram as it has proved so successful and I am willing to tolerate the week of difficulty to retain the efficacy of the Ultram. Thanks for the suggestion of taking the Melatonin with the Ambien.

I am somewhat reluctant to give up on Ambien at this stage, and it could well be that Ambien is a good replacement for the Clonazepam. You may recall that I go off the Ultram and Clonazepam in stages. What I plan to do is take the codeine in place of Ultram for 4 days and stay on the Clonazepam. After two days back on the Ultram, I plan to switch from the Clonazepam to the Ambien and see how that works.

I am concerned that the difficulty experienced with the Ambien may be caused by the switch between the Ultram and the Codeine and the subsequent return to Ultram. I would be interested in your thoughts on this. I am currently on Codeine and Clonazepam and have had two quite difficult days and nights with pains in my calves most of the time and difficulty in sleeping. Clearly this must be the withdrawal of Ultram as I am still on the Clonazepam.

I really do want to isolate the cause of the difficulty and by taking the drug holidays from Ultram and Clonazepam at the same time it is difficult to isolate what is causing the difficulty. At the moment I do know that the switch from Ultram to codeine is causing me some difficulty but I am not sure that the switch from Clonazepam to Ambien is a problem."

My thanks again, Sincerely,
Leon K.

Medical Reply

You are right about alternating times of performing drug holidays on your 2 different drugs. I generally recommend that the drug holidays on 2 drugs be done at least a week apart. You will then be able to isolate which drug is giving you the harder time to drop and it is much easier on you to make one change rather than two.

Another Reply from Leon K.

Date: Wed, 17 Dec 1997 00:06:52 EST
Subject: Re: Message from Leon K. 12/16/97

Having separated the drug holidays that we discussed I am now fairly certain that the severe difficulty I experienced 6 weeks ago was caused by the replacement of Clonazepam with Ambien. I therefore think that I need to try something in place of Ambien when I take a drug holiday from Clonazepam.

My doctor has suggested that I substitute either chloral hydrate or a barbiturate for the Ambien. I am not familiar with chloral hydrate but think that it may work on the same receptors as Ultram which I am already taking. A barbiturate seems to make more sense. Perhaps Valium. I would very much appreciate your thoughts on what I might substitute for Clonazepam for the 4 day drug holiday. I would then ask my doctor his views.

Thanks again.
Leon K.

Medical Reply

Both barbiturates and chloral hydrate likely work on receptors other than that of Klonopin (clonazepam). They are both old sleeping pill medications that are rarely used these days, due to addiction and tolerance problems. They both do not interact with Ultram.

The barbiturates or chloral hydrate may be alright for limited short term use. We have very little experience with those medications as they have not been in common use for about the past 20 years. Some patients, however, do use those medications for years without problems, but there are not many patients on barbiturates and chloral hydrate currently.

Valium is a benzodiazepine in the same class (and works on the same receptors) as Klonopin.

Date: Fri, 12 Dec 1997 01:07:47 -0600
Subject: Thank You so much!

Thank God I found this site! My boyfriend has this condition. Although, from what I've read, it must not be that severe. He does not know that he is kicking and jerking. It doesn't appear to affect his sleep. But, it sure disturbs mine.

I am hoping some of the non-med remedies will help. I am wondering, is there a chance that this condition will worsen?
Thank you again,

Medical Reply

Unfortunately, RLS and PLMD can worsen with age. Although some patients may actually get better when they get older, most stay the same or in fact worsen with time. There are many new treatments however, and most patients do well.

Some of the bed partners do not fare as well, however.

Subject: Product that works for me on RLS
Date: Sat, 22 Nov 1997 18:35:31 EST

Attention All RLS Support Groups!

My name is Linda Jordan and I'm not only new to using email, but this is my first experience using the internet to find information. I initially heard on the KMBI radio station that people had found information on RLS through the internet. This was wonderful news for me. I have suffered from RLS since I was a toddler and NO doctor could tell me what was wrong. Just a year ago I went to a doctor thinking after all these years medical technology surely would have an answer as to why I had such pain at night. The doctor ran every test he thought of and then told me: "Go home there is nothing wrong with you. You probably have restless leg syndrome. Continue taking your ibuprofen and learn to live with it."

I'm sure many of your support group have had a similar experience. Here's where I get excited. Number one, I am not one to take prescribed medication. Over the counter pain aids are all I have used, with less than satisfactory results. Approximately three months ago, my husband brought home some coloidial vitamins/supplements etc, that a long time friend was selling and trying to get us to become distributors.

By the way, I am the publisher of a weekly newspaper, Priest River Times, my husband is the sales manager for Taylor Parker Motors in Sandpoint, Idaho. I agreed to take the products for one month and see what happened.  I also was wanting to lose weight with one of the products. After about three weeks I told my husband, that this just might be helping my legs. However, at that point I was still a real sceptic, plus I still had not lost weight.

Well, we ran out of product. and after a week I once again was having my sleepless nights because of RLS. It took us three weeks to get a new supply and once again after just one week, I noticed a difference. Bottom line, I have not taken a single ibuprofen in over three weeks now. I truly take it as a miracle. I haven't really taken the time to isolate which product has helped, but I do have it narrowed down to two.

My husband is now a distributor for the company offering these wonderful health products. If anyone within your support group would be interested in trying these products please have them contact me. The products are all natural and are not expensive, only $29.95 a bottle, for a months supply. We actually do not have the time to place orders, however we will. We would rather show those who might be interested in trying the product how they could also become a distributor for a one time charge of $5.95 and then they could buy their own products at wholesale, which is $18.67 per bottle plus 5% for shipping and handling.

Please feel free to email us at or call at 208-683-2122, and we will be happy to mail anyone the complete product information. No purchase necessary. I just want others who have suffered for years, and those who might be trying without success chemical drugs and narcotics which may be hazardous to their health, to have the same pain free feeling I now have.

Linda Jordan

Once again, I am so excited to finally know there are other out there who share my same problem.

Medical Reply

We, of course, do not recommend the above product, as it has not been medically tested and we are not sure of the composition of this product.  This seems to have helped Linda Jordan and may be of benefit to other RLS sufferers, but it is likelyl that the majority of patients who try this will not get much benefit. This letter section is available to all who want to share treatments that have been helpful with the hope that others may benefit.

Date: Mon, 15 Dec 1997 00:06:46 -0800
Subject: RLS

I have only been on the net for 2 days and I started out looking for updates on Fibromyalgia studies.. but ran across your page too. I read all the letters and was nodding a lot. My symptoms are the electric current & wiggley worm sensations and sharp pain behind my knees. I often wake up with severe pain in my calves as if I'd just run a marathon with no training! I don't know if this happens as a result of the all-night thrashing sessions or is just another symptom. Anyone else relate?

Luckily my husband is a very deep sleeper and is rarely disturbed.. but I get pretty frustrated. I also related to the efforts to "beat" legs into submission. I never works but it's the same as hitting your head on the wall when the migraine is in it's 3rd straight day, you just don't care anymore. Even a second of interruption would be a blessing.

My grandmother has it too, and I cannot remember a time when I didn't feel some of the symptoms although I was only able to identify my demon a few years ago. It came in the same year as the Fibromyalgia. diagnosis. These two do not do anything to promote sleep.

Fibromyalgia. somehow keeps me in REM all night long, so not only don't I feel rested but I have vivid nightmares too! I always thought it was something in my mental status that wouldn't allow me to sit for two seconds quietly.. it was a least a small relief to know it's not.

Spokane, WA

Medical Reply

It sounds as if you do really have RLS.  There are lots of good treatments available, so you do not have to suffer.  Please seek medical help for your RLS and you should be able to sleep and feel better.

Date: Mon, 15 Dec 97 13:37:07 -0600
Subject: RLS & calcium

Wow! I have had symptoms of what seems to be called "Restless Legs Syndrome" since I was a teen, but for the last 20 years or so I have kept it under control very effectively by taking a calcium, magnesium, zinc and vitamin D supplement. I can't believe the amount of space on the Web dedicated to this thing, and how little of it mentions calcium!

As far as I'm concerned, this "syndrome" is simply a mineral deficiency, not some disease! I can't imagine taking drugs for it! Double wow!

I'm no expert, but I figured out that calcium, and its pal magnesium, are related to many sleep disorders, just by some basic reading and research (I mean basic, I was in high school when I started to put this all together.) In addition to "RLS," since adolescence I have had problems with insomnia, especially what I call "brainspins" (different from roomspins, which are alcohol induced!) What I call brainspins are when my mind keeps replaying some trivial idea while I'm trying to sleep, going round and round over the same thing, be it an occurrence from my day, or some non-sensical dream problem, or whatever. Having enough calcium gets rid of this as well as any often associated RLS.

My first clue? The old wives tale -- a warm glass of milk helps you sleep. Next clue? I read in TIME magazine that calcium is needed in the brain synapses in order to make connections. If it's missing, your brain can't get messages through. Since RLS feels kind of like brainspins in my legs, I figured that it might be due to the same sort of neurological mineral deficiency that gave me "Restless Brain Syndrome." Third clue? When I took calcium, my legs stopped twitching, and I could sleep. No rocket science, just the end of years of insomnia.

I have tried virtually every type of calcium I could find, and the most effective type is a form bonded to what are called "Kreb's Cycle Intermediates," of course with magnesium, vitamin d and zinc (these aid absorption.) Citrate forms are ok, amino acid chelates a little less so if they're top quality products. Calcium carbonate is chalk, all it does is give me gas.

I find that a supplement with calcium and magnesium in a 2:1 ratio is best for me, too much magnesium is a little too relaxing on the bowel muscles I must say, but apparently people with a higher protein and/or refined food intake (i.e. white sugar and flour) can benefit from the extra magnesium, hence a 1:1 ratio might work for them. Also, I take my calcium at bedtime. When I take it during the day I don't get the same benefits.

As for amounts, I typically supplement approx. 1000 mg calcium daily (nightly), 500mg magnesium of course. I find when I've had more sweets than usual, you know, soft drinks around the holidays, that sort of thing, I usually have to take a little more cal/mag. I figure I'm getting an average amount of minerals in my diet, I try to eat reasonably sanely, so people with a poor diet, or additional stress might need more. I found my right amount by trial and error.

Please pass this on to your contacts, constituents, subscribers, newsgroups etc. I can't believe how few times cal/mag is mentioned on the net regarding this problem, and I shudder to think that people are medicating and opiating themselves before trying this simple and inexpensive remedy. I welcome any replies or comments.

Thank you, John L.
Regina, Saskatchewan, Canada

Medical Reply

Thanks for your letter and suggestions of using calcium. This is a treatment that has been tried many times for RLS, but unfortunately seems to help only a few RLS sufferers. You are clearly one of the lucky few who does benefit from calcium for your leg problems.

Many people write in with their miraculous cures for RLS, but the chances are great, that if you do not see them mentioned on our Treatment Page, they work in only a select minority of patients. We do however, encourage your submissions of what works for you, as they may help someone out there with RLS.

Date: Thu, 18 Dec 1997 15:37:43 EST
Subject: PLMD - acupuncture

Has anyone had any experience (good or bad) with acupuncture as a treatment for PLMD? Please let me know if you have.

Thank you.

Medical Reply

We have had several RLS sufferers who have tried either acupuncture or acupressure. The results have been mixed so far, from no help to quite significant help. Most patients get little or no help from those modalities of treatment.

I have not heard of any worsening of RLS with acupuncture.

Date: Thu, 18 Dec 1997 05:16:40 EST
Subject: Another one

To whom it may concern:

My name is Sandy and I have RLS. It's early in the morning here on the east coast and the RLS has forced me up again. Like most every other RLS individual, my symptoms are the same. It started with me when I was a teenager and progressed (and worsened). I have researched and tried various drugs, treatments etc, all just about on my own.

My doctor treats me with surface sympathy (as he has patients that are seriously ill) My symptoms are the leg jumps just when I feel myself sliding into the next stage of sleep, accompanied with the lonnnnng tingling feeling that it will happen again. The PRESSURE or whatever you call it lasts a few seconds beyond the jump. (BEFORE AND AFTER) Most of the time I feel the pressure in my legs and know that it will happen. At first it was every couple of days for months and for the last couple of years (especially this last year) every night and just about all night. I do walk around in a half for as I have not slept during the nights. At times lately the leg jumps are so severe that I wind up with bad charlie horses in my legs, and a knot that wont go away. My left leg is really bad in the calf area however my right leg seems to be getting just as bad.

Somehow I don't know but I feel, sense etc that the problem is in the sleep cycle. My mind seems to want to sleep and begins the stage, however my body is not yet ready to enter that stage of sleep (it sounds crazy but like everyone else I'm looking for answers) I wonder if I'm entering the next sleep stage too soon or late? I have no answers but I an looking. It's definitely frustrating, makes me angry and moody, as well as tired.

I just recently have started looking into herbal medicine, however some of it seems just as dangerous. I don't know what to do. If I don't get some sleep soon I think I will go crazy. At times I do wake my husband up (a lot) and I spend nights walking the floor hoping and praying that tonight I'll sleep. I have tried sleeping pills and that only seem to make it worse because its hard to walk while groggy.

I'm new to this web sight but can anyone help?????????


Medical Reply

Your problems actually sound very typical of RLS. Every RLS patient has somewhat different features of the disease, but yours are quite close to the average. You have not stated what sleeping pills or other medication you have tried so far.

You may want to check our Treatment Page and see what is available to treat RLS. If your doctor is not helpful (with or without the aid of our Treatment Page), then please seek the help of a qualified sleep specialist who should be able to give you significant relief.

A Reply from Sandy

Date: Mon, 22 Dec 1997 19:03:20 EST
Subject: Re: Thank-You

Thank you for at least answering me ! Yes from what I have read I am typical. However it doesn't make it any less frustrating. The night I sent the message and read the literature, I had gone to bed at 9:00, my leg's jumped until 12:00 then I must have fallen asleep until 2:30 when I woke up jumping. At three I got up.

In answer to your questions I have tried many different sleeping pills that were listed on the treatment sheets, I have tried all the exercises, baths etc. I have tried herbal medicine and just about everything that was listed. I feel like a walking zombie. I did read in the information about a drug that I investigated that same morning, and called my doctor and asked him for it. Its the Ambien. I have taken it for the last four nights and so far I'm undecided.

For instance last night I went to bed directly after taking the medicine. I felt my legs twitch for approximately an hour and a half before that time. Just as I was starting to doze my whole body gave a violent jump. I started to cry but did fall asleep. That leads me to believe that the drug is masking the condition.

I should tell you that I also have rheumatoid arthritis. (It runs in my family) Although I was on gold treatments for 8 years I am currently in remission. I am open to any suggestions that you might have. My sister also has RLS but not nearly as bad, she just has it now and again. I really am ready to pull out my hair, unfortunately this is getting progressively worse (every night) and now multiple times during the night.

Any help? Thank-you again.


Medical Reply

Ambien is a good choice for a sedative medication and has helped many RLS patients. Stick with it for a little while to see if it works.

The Ambien may work better with additional RLS medication. I suggest you ask your doctor to add either a Parkinson's disease medication (Permax is a good first choice in this category - follow the directions on our Treatment Page) or a narcotic at bedtime (Vicodin or the non-narcotic Ultram are good first choices in this category).

Let me know how you do with your RLS in the future.

Another Reply from Sandy

Date: Mon, 5 Jan 1998 20:21:59 EST
Subject: Re: Monday 1/5/98

Hello again, and thank you for responding. I am still taking the Ambien medicine. So far (except for a couple of days) I have been able to sleep without the RLS interfering. The medicine does-not however stop entirely the jumping. I will mention the two other medicines you suggested to the doctor. By the way I did speak to my doctor face to face last week (after I requested the medicine and he gave it to me).

He did not know what RLS was, and had never heard of such a thing. Thankfully I brought the information I had printed off the computer that explains it he chuckled and said I'll be damned !!!! Now at least he believes me.

I will let you know how things are going. Thank you again for your help and support.

Oh and another thing you might find interesting, I have rheumatoid arthritis. I have been in remission for eight years, and have a artificial wrist, finger, ankle and foot joint. I understand that many sufferers of RLS have rheumatoid arthritis. It runs on my fathers side of the family.

I will keep in touch.
Thanks again.

Medical Reply

It is nice to hear that you are doing well with your current therapy. Ambien (and other sedatives) do not eliminate the leg jumping, but it does stop the arousals from the leg movements and lets you sleep.

Another Reply from Sandy

Date: Thu, 8 Jan 1998 02:41:18 EST Subject: RLS

I just thought I'd drop you a line and let you know that it's 2:40 a.m. and guess what. Just when you think that something is going to work it (jumps) up and bites you. This is the 3rd day that I've been up. I wrote to you Monday, just sat here Tuesday and today's Wednesday. Frustrating !

Any suggestions now ? The doctor gave me 5 mg Ambien, do you think 10 will help ? The literature on the drug said 10 mg was the max and than more does no good, although I thought 5mg was going to be the drug for me to stop it. Tonight the jumps, jitters whatever you want to call them were I guess powerful is the word. They made me sit up very quickly.

Medical Reply

Most RLS patients find that Ambien works better at 10 mg. Remember to use drug holidays every 2 weeks.

Date: Fri, 19 Dec 1997 11:30:05 -0800
Subject: RLS

I have had RLS for several years and I have some good news that I want to share. I am communicating to you because you are on the net. I am a member of RLS support group in the San Jose/ San Francisco area and will share the news with them by phone or in our next meeting (i.e. they do not have an e-mail address).

Recognizing full well that a medication that helps one person will not help another I leave it to your judgement whether or not you share this with your Southern Californian group. (By the way, I am a native Californian and grew up in good old Anaheim. I still have family done there.)

The medication that I began taking on November 26th is called Remeron, (mirtazapine) 30mg. Within 24 hours of taking this antidepressant my RLS was gone ! Completely gone! While it has been less than a month since changing antidepressant medication (i.e. used Zoloft for the past two years) I couldn't wait any longer to start telling folks about this dramatic impact on RLS. And I realize it may be temporary but what a great time it has been since November 26th. I still knock on wood each time I tell a friend hoping my good fortune will continue.

More background information. Medications I was taking before the change to Remeron were:

Sinemet for RLS - prescribed by doctor at the Stanford Sleep Disorder Clinic. Note: I had numerous tests at the clinic including the overnight stay. Result: found nothing wrong except the periodic limb movements and continuous sleep disruptions. Sinemet provided temporary relief but RLS came back with a vengeance between doses.

Zoloft for depression - Note: I am 57 years old now and was diagnosed with major depression in the summer of 1994. I have had no depression since then and suspect I will keep taking some medication for years.

I periodically (seasonally) take Rondec-TR for allergies. I take less and less of this each year as I get older and the allergies affect me less (one of the few benefits of getting old). This is for info only. I don't see any relationship to RLS.

That's the story. Merry Christmas and Happy New Year. This has got to be the best Holiday season for me in many years. I pray that others with RLS find relief like I have, even if it is possibly only temporary (knock on wood again).


Medical Reply

Remeron (mirtazapine), is the newest antidepressant medication.  It is somewhat unique and is the first in its own class of antidepressants.  It acts by enhancing both the noradrenergic and the seotonergic systems.  It has less side effects than the serotonin uptake inhibitors (such as Zoloft), and even promotes sleep. 

As this is a very new antidepressant, its effects on RLS are not yet known.  In fact, your letter is probably the first medical communication on this topic. It is true that as this is only one anecdotal "cure", this positive effect on RLS may not be as helpful in others (like many of the antidepressant's and other drugs' effects on RLS).

We welcome other letters from RLS patients who have tried Remeron.

Date: Sun, 21 Dec 1997 21:53:07 -0800
Subject: symptom & treatment stuff

I've had the classic RLS symptoms for about 5 years (of varying severity). On and off I have tried different treatments including benzodiazepines (Xanax, Klonopin) and even opiates. These weren't very effective (although they did help me sleep, and were "pleasant" to take).

Eventually I gave these up (yes I did the drug holiday thing so I wasn't tolerant). However, two years ago I began treatment (for an unrelated problem) with a medication called Buspar (busprione HCl). Not only was Buspar effective for its prescribed use, but it had a positive effect on my RLS. For at least two years now my RLS symptoms have been greatly ameliorated- they are less frequent, and less intense (but still there). Another plus: Buspar has few, if any, side effects. It is thought that Buspar has some action (among others) on the dopamine system.

I have also heard about (from a reliable friend) another treatment that is VERY effective. Due to its controversial and illegal status, I hesitate to mention it. However... I understand that small amount of cannabis (in the inhaled form)completely and utterly stop the RLS symptoms- but only for about an hour to ninety minutes. But that's usually enough to fall asleep. Plus from what I've heard, the side effects are minimal or none.

Although I would hesitate to recommend anyone try cannabis, if a sufferer is willing to try this in some legal circumstance (such as in the form of prescribed Marinol), it might be VERY helpful. At least it has more chance of being effective then swinging a dead chicken over your head.

Robert F. B.

Medical Reply

Thanks for your letter. I have not read or heard of any reports on the effects of Buspar on RLS. We will see if others have noted a similar effect, and hopefully they will email us so we can pass that information along. Buspar does have some moderate affinity for the D2 type dopamine receptors, which might account for its possible benefit in RLS.

We cannot comment on the use of cannabis in RLS, as there are no medical studies in the literature on this topic, and we have never received any letters on this yet. As you expected, we cannot condone using illegal drugs.

Date: Wed, 24 Dec 1997 02:00:45 EST
Subject: RLS Medication

After many trying nights and medicine "tryouts", a Permax and Ultram combination is working best for me. However, after about 2 hours sleep, I wake up (I think due to "twitching" and "tremors" in my left foot) and am in a peaceful but sleepless state for about 1 to 2 hours (maybe sometimes 3). Then I drift back to a deep sleep for the rest of the night.

I don't think I'm hitting REM stage enough though and would like to eliminate this "mid-night" "wakeful" period. Klonopin (Clonazepam) has been recommended, but I did see some "warnings" on drug interaction concerns with Ultram (i.e.: Re: MED: Ultram warning Cat.C (roberson@MARSHALL.EDU) Sat, 8 Feb 1997 17:03:21 -0600)

Could there be a risk using Ultram and Klonopin?????????? Again, thanks for the invaluable service and attention your giving to those afflicted with RLS; I can sense an increasing momentum in awareness of/resolution for this problem and remain optimistic.

VTY, G1B4 in Syracuse, NY

Medical Reply

The major concern with Ultram is at higher doses (greater than 8 per day) where it might induce seizures. This could be worsened by drugs that lower the seizure threshold (such as many antidepressants). Klonopin and all the sedatives, actually are used to treat seizures, so that is not a problem.

There was a warning about combining Ultram and sedatives, which could possibly reduce the drive to breathe. This would only apply to massive doses, and should not be a problem in most patients with normal doses of the medications. Some emphysema patients could be at risk, but this should be known by their doctors.

In general, I have no problems combining Ultram and a sedative. I do not like Klonopin as a choice for an RLS sedative medication, for the reasons noted on our web site, but prefer Xanax, or Ambien.

Date: Tue, 30 Dec 1997 16:29:19 -0500
Subject: restless leg syndrome

I'm a 56 year old male living near Rochester NY. I've spent the past 20 or so years thinking I was nuts - usually in the evening my legs would get a numb feeling and then uncontrollably spasm and I'd groan or grunt from the effort and that would continue over and over again until I went to sleep. I find it difficult to sleep for more than 2 or 3 hours at a stretch and I know I spasm during sleep since the women in my life do their best to assist me in finding my own room and bed to sleep in.

The nickname I've given my condition is the twitches. My girlfriend located your site and its opened my eyes and I now know I'm not alone and this is a real medical condition - amazing!!!!!!!! I've never convinced a medical professional that this was real and have never taken medication BUT I'm taking extracts from your fantastic web site with me for my next medical appointment and maybe just maybe I can be helped. thank you for this information.

Jack J.

Medical Reply

As you can see from our web site, it is a very common experience for RLS patients to be ignored and the diagnosis not to be made. Let us know how you do, as with proper treatment you should get much better. Keep pushing your doctors until you receive treatment that is similar to our treatment page, and improves your real medical condition.

Date: Wed, 31 Dec 1997 22:44:51 -0800
Subject: Ropinirole

The Daily Telegraph, London of  Dec. 16, 1996 reports the successful experience if one RLS sufferer using Ropinirole as prescribed by Dr Andrew Lees of the National Hospital for Nervous Diseases. I notice that Ropinirole has recently been added to your webpage - can you let me know any more trial results? My mother suffers badly from RLS

Christopher M.

Medical Reply

Thanks for your information on Requip (Ropinirole). This is the first one that we have heard so far for this drug helping RLS. Keep tuned to our web page for more reports on this new drug.

Date: Wed, 31 Dec 1997 20:27:11 -0800
From: Bud Radner Subject: RLS

I just found this site after trying unsuccessfully to take a nap on the couch. My right leg kept twitching every 30 seconds or so. I finally gave up and went surfing for info on RLS.

I am a 40 year old male and I have put up with this problem for probably the last 15 years. From what I've read of the letters, my case seems to be not as serious as some.

I am not really interested in taking drugs on a full time basis so I have tried some alternate measures. Melatonin works some times, and daily exercise seems to help. Recently, a woman from work (full of down-home Pennsylvania-Dutch advice) told me that she takes Vitamin B. I tried it and it really seems to help. I take a "B Stress Complex" daily, or if I forget to take it for a week or so, when I have an attack. It usually calms things down within a half hour. I began chewing two kids multi-vitamins daily and that has also helped my general state of health.

(The Pennsylvania Dutch also recommend Sausage and Beer for a variety of ailments).

Thanks for the support. Keep up the good work. I hope my advice helps someone get some rest.


Medical Reply

Thanks for your letter. It sounds as if you have PLMD rather than RLS. That usually (but not always) is less troublesome than RLS.

Date: Thu, 1 Jan 1998 22:49:28 EST
Subject: Thank you

I wanted to thank you for your advice given to me a few months ago. I was taking Klonopin and Permax. The Klonopin had ceased being effective, and the Permax and I were not getting along. He suggested I stop the Klonopin and try Xanax. I just wanted him to know that after getting off of the Klonopin (after about 3 years of using it) I feel much better. I didn't realize what a depressant the Klonopin was like a blanket was lifted off of me, after getting it out of my system. I didn't realize what it had done to me.

The Xanax has been effective for the last 2 months...1 mg at night, without the Permax. So for now I feel great, my restless legs are under control, and I want to thank you for taking the time to help me.

Happy New Year.
Jan S.

Medical Reply

You are welcome and I am happy that you have improved with the medication change. The only other advice is to remember to take drug holidays of 2 days every 2 weeks off the Xanax.

Ambien may or not be helpful for your drug holidays, but only if you cannot do without medication on your off days (it is always better to be totally medication free on your drug holiday).

Date: Fri, 02 Jan 1998 17:53:33 +0000
Subject: RLS Causes

I've had this disorder for several years now, but discontinued the use of Klonopin because of daytime sleepiness. I've scanned your website several times, but so far haven't found the answer to a basic question--

What CAUSES RLS? Does anyone know?

Why does it always occur just when you want to relax and go to sleep at the end of a busy day?

I would be so grateful if someone could answer those questions, or perhaps point me in a direction where I could find the answer myself.

Thank you,
Ann D.

Medical Reply

You have asked some good questions. Unfortunately, the cause of RLS is still completely a mystery to all the experts in the field. We also do not know why it tends to worsen with relaxation or when trying to fall asleep.

Date: Wed, 07 Jan 1998 14:42:08 -0500
Subject: Message from David R. (husband)

I have a question about RLS/PLMS. My wife reports that I had it bad last night. Today I feel an undefined tension/pressure in my legs. Am I having RLS in the daytime? Or am I having a kind of soreness/strain from the nighttime leg movement? The reason I ask is that the feeling reminds me of leg soreness after walking a long time or standing around (as in airports, malls).

The worse symptom for me is feeling sleepy during the day.

I take Prozac (1 and 1/2 a day). I also normally drink lots of caffeinated coffee. But actually, I have been trying to cut down and had only one cup of tea yesterday (otherwise decaf). Could my cutting back on caffeine cause me to get worse RLS? (It gave me a headache).

I will definitely tell my doctor about the Prozac and RLS.

Are there any recommended exercises for RLS? Any contraindicated?

Thanks so much. Sincerely
David R.

Medical Reply

It sounds as if you have the PLMD (leg movement problem) at night, but not RLS. Restless legs is generally more than a feeling of soreness/strain, and is extremely strongly associated with a feeling/need to move your legs for relief. There are stretching exercises that help RLS, but not PLMD.

Date: Thu, 08 Jan 1998 20:08:47 -0600
Subject: "Growing Pains"

Wow.... I can't believe there are actually others with this problem! Since I was 8 or 9 I remember getting out of bed to do deep knee bends. I remember my mother telling my pediatrician during a yearly visit, and he called it "Growing Pains". He said my bones were just growing & it meant I would be tall! Well, at 5'5" I stopped growing & in college I'd run stairs at 3 am so my roommate could get some sleep.

Now at 40, I still get up for those night-time knee bends. Everyone around me thought I was just hyper active! In reality, I'm exhausted!!

Medical Reply

If you are still exhausted, then you should seek help. With proper treatment most RLS patients can get relief from their symptoms.

Date: Fri, 09 Jan 1998 12:26:22 -0500

I was at my wits end until my friend (a doctor) found some information on using Neurontin to treat RLS. Well, I'm here to tell you....IT WORKS!!! For the first time in years I'm completely symptom free. The drug has very few side effects.

I think that if more physicians were to prescribe this treatment there would be a lot more people (and spouses) enjoying a decent nights sleep.

Brian W. - Michigan

Medical Reply

Thanks for your letter on how well Neurontin worked for you. Unfortunately, it does not seem to work that well on everyone. It is, however, a good drug to think of when the primary ones do not help.

Date: Fri, 09 Jan 1998 17:10:26 -0500

First, I want to thank you for this page. I refer to it often and find it most helpful. I am the facilitator of the Sarasota RLS Support Group and frequently pass along information I find here to the people in our group.

I would like to relate my personal experience with magnesium. Recently my physician started me on 800 mg of magnesium per day along with Permax. He warned me that it could cause diarrhea. Sure enough, I did experience a change in my bowel habits, but the RLS was for all intents and purposes, gone! Recently I stopped the magnesium for 24 hours as I wanted to be certain it was the magnesium that was causing the lingering change in digestion I was experiencing. As soon as I stopped the magnesium, my RLS symptoms returned! I had no idea how much the magnesium was helping me until I tried this experiment. You can be sure I have reinstated the magnesium in my treatment routine. It certainly is worth the slight side effects mentioned. I am aware that some people may experience more severe side effects than I have, but for those of you who can tolerate it, it is worth a try.

I just wanted to pass this along to anyone who might be interested in trying magnesium.

Again, thanks for this opportunity to learn more about the treatment of RLS! It is so appreciated.

tb, Sarasota, FL

Medical Reply

Thanks for your experience with magnesium. We will post it on our web page.

Date: Fri, 09 Jan 1998 21:06:23 -0400
Subject: Switching from Bromocriptine to Pergolide

Hi again. I finally got a prescription for Pergolide. I've been taking Bromocriptine for about 6 months with very uneven results. I started the Bromocriptine at 0.625 mg at bedtime (I cut the smallest pill into quarters) and worked up to 15.0 mg at bedtime. I'm much better with the Bromocriptine than I was before taking any medication at all, but it doesn't look as if I'll be able to reach a dose at which I no longer develop tolerance.

Now I've got Pergolide. My question for you is this: Since I've been on the Bromocriptine for so long, do I really need to start the Pergolide. at one 50 mcg tablet? I know that side effects can be a problem, but shouldn't my having taken the Bromocriptine for so long have made a difference? My doctor--ever cautious to the max--suggests the 50 mcg dose. But she has little experience with PLMD and none with Pergolide.

You thoughts would be much appreciated. Thank you kindly,

Medical Reply

There is no special right or wrong way to change from Bromocriptine to Pergolide (Permax). The safest and simplest way would be to substitute Pergolide for bromocriptine, slowly cutting down on the bromocriptine (taper off the bromocriptine slowly). One of the 0.05 mg Pergolide can replace 1/2 of a 2.5 mg bromocriptine tablet. This should cause the least amount of side effects and problems.

Another Reply from Mike

Date: Sat, 10 Jan 1998 08:25:11 -0400
Subject: Re: Switching from Bromocriptine to Pergolide

Thank you so much for your quick reply. I very much like your suggestion that I gradually phase out the bromocriptine while replacing it with pergolide; I'll start the switch tonight.

During the 6 months that I've been taking bromocriptine, I only missed taking it one night. (I skipped it on purpose because I had to stay up late with an emergency and then get up early the next morning, and I didn't want to still be feeling the effects of the drug during the morning hours.) Was I EVER sorry! By noon the following day, I'd almost reverted to what I used to call the "zombie" state, when I felt and functioned like the walking dead. That experience, by the way, made me reluctant to discontinue the bromocriptine and replace it with only a bit of pergolide.

So here's the question: Given the severity of my sleep problems without the drugs, does a drug holiday sound like a good option for me? In her desire to give the bromocriptine every possible chance to work, my doctor had several times mentioned the possibility of a holiday. I told her that, while I understood the idea perfectly, I thought such a holiday should be my last option, as it would render me nonfunctional, not to mention miserable, for the duration. Do you have any suggestions for me regarding possible drug holidays?

Thank you kindly, --Mike

Medical Reply

Drug holidays are only useful for medications that are addictive or that you can develop tolerance to after steady use. The Parkinson's disease medications do not have these problems, so a drug holiday would be of no use at all, and as you have already noticed, might cause you difficulties without any benefit. The drug holidays are only recommended (strongly advised actually) for the sedatives and narcotics.

Another Reply from Mike

Date: Sat, 10 Jan 1998 16:47:58 -0400
Subject: Re: Switching from Bromocriptine to Pergolide

THANK YOU for the note. But I'm genuinely surprised to hear that Parkinson's meds don't have a potential for tolerance problems.

When I started taking bromocriptine, I took 0.625 mg per day, and it worked well (well enough, anyway). But after about 10 days, the effects of the drug seemed to be fading, which we took to be a sign of my developing tolerance it. We raised the dose to 1.25 mg, and that worked OK for several weeks. Again, the fade, so we upped the dose a second time. The process of fades followed by increased doses continued for a 6-month period, until I'd reached 15 mg.

A couple of times, we thought I might have finally reached a high enough dose at which I'd no longer have tolerance problems. For example, at 11.25 mg (4 1/2 pills), I got good results for some five weeks.

I now wonder if perhaps my erratic experiences with bromocriptine weren't more a reflection of the unpredictable course of the disorder, rather than any indication of the drug's efficacy. Still, the drug did work for a while each time we increased the dose.

If not tolerance, what do you think was happening with the bromocriptine?


Medical Reply

What you are describing is not tolerance. Tolerance develops over a minimum of several weeks, and more often several months. When a new drug is introduced into your body, it may seem much more potent at low doses until your body gets used to it. That is why we start medications at low dose then gradually increase the dose until the effective dose is attained. This process takes a few days to a week or so for each dose level. This explains the the fading process after your initial "jolt" on the increased dose. RLS can be erratic also, making the dose adjustment difficult to perform and understand.

Another Reply from Mike

Date: Sun, 11 Jan 1998 06:42:23 -0400
Subject: Re: Switching from Bromocriptine to Pergolide

Last night I started replacing bromocriptine with pergolide using the schedule you suggested, and I'm happy to report no side effects.

Having access to you through the California Support Group is such a blessing after so many years of being told my doctors that all I needed was a good psychiatrist.

Thank you.

Medical Reply

Glad to hear that you are doing well tapering the bromocriptine and starting the pergolide. My suggestions are only suggestions, however, and should be checked out with your personal physician before being instituted. Let us know how you do in the future with pergolide and off the bromocriptine.

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