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Date: Mon, 12 May 1997 15:30:15 -0700
Rhus Tox- a poison ivy derivative for pain and stiffness in the joints and ligaments when the pain is worse with cold damp weather. It's a homeopathic remedy. Drs. don't seem to want to be educated on RLS. Does any one know of a Dr. in the Bremerton, Silverdale, Poulsbo area that really knows of the treatments out there for RLS. I think recommendations of Drs.that can help should be listed on the internet. If I come up with one I will pass it on. I am a 45 yr female who lives in Washington State.
To find a doctor in your area, just go to the ASDA link on our web link site page and see if you can find a sleep specialist near you. If not, often a neurologist may be quite up on RLS.
We do list treatments (even homeopathic ones) from doctors and even lay people, if they write to us. Right now our web site is the only one that has various suggestions (good or bad) on the internet.
Date: Tue, 13 May 1997 21:20:38 -0400
Subject: RLS and knee-cracking
I have probably suffered with RLS for more than 10 years. It intensified 8 years ago when I was pregnant and on complete bed rest. The only thing that relieved it was Demerol.
I haven't seen others posting this symptom, but besides the jerking, the need to get up and walk, and sometimes a lot of pain, I have to keep cracking my knees. This affects both of my legs. In recent years I have started to get the restlessness while being stuck in traffic (I drive approx. 45 minutes each way in rush-hour (stop and go) traffic. If it gets past about 50 minutes I start to feel like I am going to scream and jump out of the car. My legs just keep thrashing (not a great thing when you need to depress the clutch!).
Anyhow, I have been taking Prozac in the last few years for depression. I was recently prescribed Elavil at night. It worked for about two months, and then the knee cracking came back.
Is there anyone else out there who has this knee-cracking thing?
-- Enid W.
We have heard of some variations of knee cracking. We will post your letter on our web page and see if others have similar RLS complaints.
Date: Thu, 15 May 1997 20:53:58 -0400
Subject: Local Support Group on RLS
I have been suffering from RLS for years. I have recently moved to North Carolina from Michigan. My doctor in Ann Arbor, Michigan prescribed Sinemet. I find that it works during the night fairly well, but my legs usually start driving me crazy around 5:00 or 6:00 pm. I hate taking the drug that early as it puts me to sleep.
I would like to know if there is a support group in North Carolina.
Thank you for the very informative on-line.
You can check for the nearest support group near you by going to list of support groups in the United States at the RLS Foundation web site.
For your RLS symptoms that occur at 5-6 PM, consider (with your doctor's approval) taking an extra short acting Sinemet at about 4 PM.
Date: Sat, 17 May 1997 09:08:08 -0700
Subject: RLS and response to letter from TB on "Patient letters"
Thank you for such a great site! It was just yesterday that I even heard of RLS and I thought I was a bit crazy. I'm going to the opera tonight, with dread, because my symptoms of "tortured legs" has been much worse recently.
What I'm also writing about is in reference to a paragraph in TB note, the first on this "patient letter" site. He also has a problem of falling asleep while driving, esp. in the a.m. I have had this for a few years and it is very dangerous, but my doctor and therapist say "never heard of this." It is another, although possibly related to RLS?, crazymaker.
If possible, could you forward this to TB with my address in case he has found any leads to more information? And/or if you might know of a source, name, anything, could you e-mail me a lead?
Any help would be greatly, and I mean greatly appreciated.
Thanks again, Darlene
Sorry, we can't generally forward mail to other letter writers. However, we will post your letter on our page and if we get a response, we can forward it to you as you have already requested it.
We suggest that you make a copy of our Treatment page and see a local doctor who can treat you for you RLS problems. Most patient get excellent relief with appropriate therapy.
Date: Fri, 16 May 1997 17:14:48 -0400
Subject: PLMD & Opiates?
I've been burrowing on the wonderful website maintained by the Southern California Restless Legs Support Group, and want to thank everyone involved for maintaining so valuable a site.
I have a question. Is PLMD treated with the "class 3" (using your classifications) medications -- Analgesic (pain-killing) Medications - Opioids/Narcotics -- or are they used only with respect to RLS? I ask because, as someone with severe PLMD, I don't experience the pain and limb discomfort often suffered by folks with RLS. But I've had limited success with a variety of meds from the first two classes (klonopin, Sinemet, Sinemet CR, etc.) over the years, in many doses and combinations. Have opiate medications taken in small dosages at night been used for PLMD?
I am, of course, not asking for specific medical advice here. I'll be seeing a neurologist in 2 weeks, but I also want to be as well informed as possible. My wonderful g.p., with whom I had an excellent relationship and who has been a source of guidance and support over my many years of symptoms/diagnosis/treatment, has left this area. I'm trying to find another sympatico g.p. to replace her, but it isn't easy...and keeping myself informed is especially necessary in these circumstances, I think.
Having PLMD sometimes seems like having an orphan disease's orphan disease: it can be difficult to discern what treatments appropriate for RLS are also likely to show success with PLMD. But I'm incredibly glad that there are sources out there to help. Thanks again.
You are right that PLMD often plays second fiddle to RLS as far as information on the Internet and in text books. The main reason for this is that RLS generally causes more severe problems and symptoms and thus is harder to live and deal with. In addition, 70-90% of RLS sufferers also have PLMD. Only 1/3 of PLMD patients have RLS.
PLMD is a much more common condition. RLS occurs in about 5% of the population while PLMD may be found in 30% of people over age 50 (and 44% of people over age 65 !). Most of the people with PLMD do not have problems with their limb movements. In sleep studies, these movements often do not even cause arousals from sleep.
To answer your other question, opiates may improve PLMD but generally have a more marked effect on RLS. Although patients have reported significant improvement of their PLMD with opiates, it generally takes a higher dose, and is inconsistent from patient to patient.
Other than the sedatives and the Parkinsonian medication, only Baclofen has demonstrated some benefit for PLMD.
Good luck in finding treatment for your PLMD, and let us know what helps you the most.
Date: 97-05-16 04:59:26 EDT
I hope you can help me. My daughter has been waking up several times a night screaming that her legs hurt. When we have her try and walk, she stiffens her legs and cries in pain. We have been told she is experiencing "growing pains" as she is just four years old. This has been going on for almost a year. She is sleep deprived as are we. Pediatricians have very little info. on this syndrome. Can a child suffer from this? Is there anything we can do to alleviate some of her pain? Thank you for your time, I would greatly appreciate any info. you may have.
Sleepless in AZ.
Your daughter's leg problem could very well be RLS. Many RLS patients can easily trace their leg problems back to very early childhood.
There are at least two problems with treating your daughter. It is very difficult to be sure that RLS is the right diagnosis in a 4 year old. More detailed questioning would be needed by an experienced pediatric sleep physician. Young children are poor historians for their medical problems and are often very suggestive to answer positively to adult questioning.
The second problem is the medication used for RLS is mostly for adults. Doses can be lowered for children, but these medications are very rarely given to young children, especially on a chronic basis (see our web page for a discussion of the primary RLS medications).
Again, an experienced pediatric sleep specialist may be able to both diagnose and treat your daughter. You can search for sleep specialists by checking with the American Sleep Disorders Association (ASDA) link on our web site.
Date: Thu, 22 May 1997 19:53:55 -0700
Subject: Restless Leg Syndrome
Normally I wake up about one hour after going to sleep with aching knees. Sometimes then pain radiates down my legs. I get up and take a hot bath and that relieves the aching temporarily. I go back to sleep and quite often will be awoken a second time during the night with the same aching. This has been going on for about 10 years. I have tried various drugs, but nothing has helped. Do you feel this is RLS or some other chronic disorder and what should I do? Need help and assistance from this group.
Your symptoms are similar to RLS, but I would need more information to decide. Your problem could be arthritis in your knees. Do you get the pains at other times when you are relaxing or exercising? There are lots of other questions (age, other medical problems, etc.) and examination that may be necessary to figure out more definitely what you have.
Patient's reply to above
Date: Sat, 24 May 1997 15:56:01 -0700
Subject: Re: Restless Leg Syndrome
Thank you for the reply regarding RLS. My GP has sent me to an orthopedist, neurologist and various other tests. No one has found any organic problem.
I am an active 70 year old who plays golf, uses a health rider three times a week and walks 2 miles each day. I never have pain during these activities. Frequently, but not always, I get some discomfort when I am watching TV before retiring. Then like clockwork, an hour after I get to sleep, I wake up with this aching in my knees. A hot bath relieves the aching temporarily; but then some nights I will be woken up a second time.
The doctors have prescribed a whole raft of drugs: quinine, halcion, klonopin etc with no relief. It's been 8 years so I realize it is not a life threatening matter, but what an aggravation. None of the doctors have thought it was RLS; but of course they don't know what it is! Currently I am considering going to a sleep clinic here in Portland, Oregon. Any of your thoughts would be appreciated. Let me know if you need any additional info.
Thanks for the much more detailed description of your symptoms. At this point I think there is a very significant likelihood that your problem is RLS. As there are no specific tests to prove the diagnosis of RLS and RLS symptoms are very hard to describe, one can never say for sure that RLS is the definite diagnosis with 100% certainty. After excluding other conditions that can cause similar symptoms, we can usually diagnose RLS in patients such as yourself with a reasonable expectation of being right. A sleep study cannot diagnose RLS. It may be mildly helpful to diagnose PLMD that often occur with RLS. But finding PLMD does not help in confirming the diagnosis of RLS.
You may want to try the Parkinson's medication (either Permax or Sinemet) or the pain/narcotic medication. Check out the RLS Drug section on our web page for more details. Most RLS sufferers can find (with the aid of a competent physician) treatment which should render very significant relief.
Good luck and let us know how you do.
Another reply to above
Date: Fri, 06 Jun 1997 14:23:03 -0700
Subject: Re: Restless Leg Syndrome
Just a note to let you know I visited my Internist yesterday about my RLS situation. I had previously send him copies of your note and the writeup of medications on your website. This was extremely helpful information!!
He decided to try me on a low dosage of Sinemet CR (25-100) at dinner time. Last night I slept till 3AM and had no aching until about 6 AM. Don't know if one day of medication could cause those results but its certainly a step in the right direction. Fortunately he is computer literate and I am going to keep in touch with him by email so he can monitor the effectiveness of the medication.
Again, thanks for your past advice and assistance.
Glad to hear you got good results from the Sinemet. It should work with the first dose, that is if the dose is high enough to resolve you RLS symptoms. In fact, with Sinemet, it is best to keep the total dose at only 2-3 of the 25/100 tablets per day.
Another reply to above
Date: Sun, 8 Jun 1997 12:59:48 -0700 Subject: RLS I have now gone 3 nights without any leg aching whatsoever!!! The downside is that I take one-half of a 50-200 tablet of Sinemet CR at the end of dinner and during the evening I have a little nausea along with feeling somewhat "different". Nothing serious but I just don't feel normal.
In your last note to me of June 6th you suggested that I keep the total dose at only 2-3 of the 25/100 tablet. Do you think it practical that I try to shave off a third of the half tablet? My doctor gave me samples of the 50-200 tablets so that is the reason for using that dosage tablet.
With such good Sinemet results, what would be the very lowest dosage that I could take and still have it effective?
Again, many thanks for your help.
Breaking pills in thirds is not a good idea. The accuracy of the dosage becomes quite difficult. What would be better is to cut all the Sinemet CR 50-200 pills in half, and use each of those as one dose. If you need to fine tune the Sinemet dose more, then you must get the Sinemet CR 25-100 tablets and cut them if needed.
If you need more than 3 of Sinemet 25-100 pills per day, you might want to consider adding Permax, instead of increasing the Sinemet dose higher. At the higher doses of Sinemet, problems such as tolerance and augmentation tend to occur more commonly.
Follow Note from Jack A.
Date: Sat, 28 Jun 1997 10:28:52 -0700
Subject: Re: RLS
Just wanted to check in and let you know my progress. As you might recall you were good enough to confirm my RLS symptoms. I went to my physician and he put me on Sinemet. One 25/100 tablet each evening. Since starting the Sinemet over 3 weeks ago, I have been completely free of any RLS symptoms and am sleeping thru the night!!
I keep reading about the rebound effect of Sinemet and wonder how long it takes for rebounding to kick in? I am so elated about my current situation and hope it will continue!!
Medical Reply to above
Keep the dose of Sinemet low (2-3 of the 25-100 tablets per day) and you should have no problems with augmentation. This problem usually occurs after several weeks or months of therapy as the dose of Sinemet is being increased due to lack of control of RLS symptoms. You will likely not have to worry about this problem if you remain completely controlled with low doses of Sinemet.
Date: Thu, 22 May 1997 13:32:08 -0400
Subject: What to do?
My name is Jane. My husband has been complaining about my legs for quite a while now. The other night he couldn't sleep( because of me naturally) so he decided to time my" kicks". I kick every 30 seconds on the dot. I am very tired always during the day.
I recently learned that this is an actual seep disorder so know I'm left with what to do. Are there any effective treatments that don't require medication? Also what is the cause of this curse? Looking forward to hearing from you.
You have what sounds like PLMD (Periodic Limb Movement Disorder). The legs will usually jerk at 20-30 second intervals. Treatment is not necessary if the only problem is that of your spouse being bothered. If you are waking up sleepy after 7-9 hours of sleep, then the PLMD may be causing arousals throughout the night, keeping you from getting sufficient deep sleep. In that case medication may be the only solution. If given correctly, the medication should be safe and effective.
I would not start on what could be life long medication without first seeing a sleep specialist and probably having a sleep study to prove that PLMD is the right diagnosis.
Date: Sat, 24 May 1997 15:17:29 -0700
Subject: TENS Unit for Restless Legs
I call it an Electrical Current going from the knees, down the leg and finally out the toe (and then the toe jerks), and then it starts all over again.....that is IF I can hold them still that long!!!
I have tried Sinement, and it gave me horrible nightmares. When I would put the pill in my mouth, I felt like I was taking the 'devil's pill'. I cannot bring myself to take it anymore. I still take Klonopin (it works the best out of all I've tried...still not great), and I go on 'breaks' every so often, but right now I'm going through a particularly hard time getting anything to work. No one knows what a RLS sufferer goes through unless they have 'been there'. It is HORRIBLE! It is something that cannot be explained, cannot be treated (successfully), no one knows just what it is, or why....and it is a NIGHTMARE!
I have heard of a TENS Unit that can be worn to stop pain from being transmitted from the lower extremities to the brain. And I am wondering if the same could be used to interrupt signals from the Restless Leg to the brain, or vice versa? Do you know what a TENS Unit is, and what are the possibilities with regards to Restless Leg? I know that a vibration apparatus helps as long as it is applied to the leg or legs (the problem being that it can't be held on the legs long enough), so why wouldn't the TENS Unit work?
I would appreciate your feedback on this.
Tens units have been tried with some success (usually modest) in RLS. They provide electrical neuromuscular stimulation and some studies and patients have reported various amounts of benefit when using it. For more information on this therapy see our web page on Comprehensive Review of Drugs to Treat RLS under Non Conventional Treatment section.
You may want to consider the narcotic class of medication for further relief. Permax may also be of benefit despite your experiences with Sinemet. If the above fails, consider Neurontin.
Good luck and let us know how you do with treatment.
Date: Tue, 27 May 1997 04:47:37 +1000
Subject: rls and "sleep paralysis" and Galactorrhea
My RLS occurs for "stretches" (pun intended) of approximately 1-2 months at a time, with a reprieve of approximately the same length of time. A mixed blessing, perhaps, for these bouts of agonizing calf "irritability" (for lack of a proper description) is the only reprieve I have from what can be described as Sleep-paralysis, which causes the same lack of restful sleep.
Tired, I am. Dear God I am So Tired; Day and night. I cannot recall when, if ever, I have ever felt restful, energetic, ready to sieze the day.
In the absence of rls, during the first moments of sleep, the "electric-buzzing" feeling is not in my legs, but within my head. Each time I fall asleep (actually, every time) the vibrating humm grows louder as I fall deeper asleep. Frightened, I try to move, sit up, but find myself unable to flutter an eyelash or even grunt. I exert a great amount of energy trying to jerk my arm or even grunt to signal my wife to wake me up. I am %100 conscious, but appear to be sleeping.
Also, I have Galactorrhea. I find this green and white discharge from my breasts disturbing, as any 26 year old male would. My doctor looked at all this, along with my fatigue. Sent me for blood-tests, MRI scans, the works-to no avail. Pronounced as having a "functional problem", prescribed Prozac. A few months of Prozac left me unable to function at all (confusion,etc).
I believe that something is wrong with my pituitary gland. My personal investigation into all my problems lead me to believe that Bromocriptine may help. I believe also that some sort of infection, injury, or inflammation of the spinal cord or endocrine glands may be the culprit. I have no energy left but to return to my closed-eye pacing.
The RLS that you have sounds quite typical, except for the rotating periods of 2 and half months of symptoms on and off. The daytime sleepiness and weariness occurring especially when your RLS is inactive may be due to one or two other problems.
Sleep paralysis and daytime sleepiness are 2 common symptoms of Narcolepsy. PLMD is also very common with RLS (85+ %) and could cause nighttime sleep disturbance resulting in daytime sleepiness. An overnight sleep study followed the next day by an MSLT (5 nap studies at 2 hour intervals) may easily diagnose your sleep problem and lead to effective treatment.
Parlodel (Bromocriptine) is used to treat RLS and for pituitary disorders (which could possibly cause galactorrhea). Your problem with galactorrhea should be completely investigated before starting treatment.
Good luck and let us know how you do.
Date: Wed, 28 May 1997 04:28:07 -0400 (EDT)
Subject: medication change
After taking Klonopin for almost 3 years, its effectiveness is almost nil. I have tried Sinemet, but adverse side effects, such as depression made it intolerable. It seems that when I see my doctor, a trial of Xanax or Ambien might be in order, as I have also been taking various antidepressants that seem to interfere with the RLS and make it worse...so I would like to try to discontinue the antidepressants.
Which of these medications (Xanax or Ambien, etc.) is the "safest" in terms of doing less harm to the body?
"Safest" is a difficult term to use with respect to medication. Very often what is very safe and effective for one person has numerous side effects or is ineffective for another. That is why you see so many different medications in each class of similar medications.
Klonopin and Xanax are both benzodiazepine drugs ( they are in the same related family of drugs). Their side effects tend to be very similar, except that Klonopin has a very long half life and thus stays in the body for longer periods and may cause daytime sleepiness. Xanax has a mild antidepressant action whereas Klonopin may accentuate depression.
Ambien acts on the benzodiazepine receptors, but much more selectively than either Klonopin or Xanax. Clinically, it is very similar to Xanax, with a somewhat shorter half life. Side effects are low, but again these are very individual.
The reason why the Klonopin stopped working may be due to your continual use of the drug. Often taking a drug holiday of 2-3 days off the drug every 2 to 3 weeks may assure the lack or developing tolerance to the drug. Ambien reportedly does not develop tolerance problems after continued use, but I would still recommend drug holidays even with this medication.
Also you should consider the use of Permax and/or the narcotic/pain medication. If possible it would be nice to get off the antidepressant medication as they can definitely cause increased RLS which you already seem to have noticed.
Update from Jan. O.
Date: Sun, 6 Jul 1997 16:16:00 -0400 (EDT)
I am 46 female and have been on Klonopin for about 3 1/2 years. It worked great for the first 3 years. After increasing the dose there are times when it doesn't work at all. I tried Sinemet with bad results (bad side effects) I asked for Permax and felt terrible after taking 1/2 of .05 tab. I tried that off and on for a couple days....then stopped. After no sleep for several days I am trying the Permax again only taking it earlier in the evening...around 7:30 with about 1 or 1/2 mg Klonopin. I hope that after keeping up with this, it may be effective and have fewer side effects (Felt like I had been drinking and had a bad hang over).
My question: is the Permax any more damaging to my system than the Klonopin? My doctor won't perscribe Xanax...says it is addicting (I just saw him). He is a good guy, in that he listens, but I think I also need a drug holiday from the Klonopin....any suggestions on how to convince my doctor to prescribe something else related to Klonopin for the drug holiday?
Several questions...and a bit of rambling. But I thank you for your time.
Permax and Klonopin are not "damaging to our systems". Some people have side effects from these (or any other medications), but no permanent damage is done from taking these medications.
Xanax is addicting if used (however so is Klonopin). Xanax cannot be used on your Klonopin drug holidays, as it is in the same class of medications as Klonopin and will therefor activate the same receptors in the brain that you are trying to not stimulate on your drug holiday. Medications in another class, such as the narcotic/pain killers (for example, Vicodan), would be helpful for drug holidays from Klonopin.
I do prefer Xanax over Klonopin for RLS, but some patients may do better on one or the other, depending on their own personal makeup. Another Note from Jan
Date: Mon, 7 Jul 1997 16:58:41 -0400 (EDT)
Subject: Re: RLS
Thank you for your information. I do tend to worry (one of my problems) about the medications and their long term effects, but I'll try to stop worrying. I've been trying to tolerate the Permax along with the Klonopin, and am still feeling pretty dopey during the day...I teach and so I'm off for the summer...which allows me the luxury to be a little dopey for now. I just hope that this side effect goes away....I'll keep with this for a week more in hopes of some good sleep and wide awake days.
But it seems my alternatives are dwindling as the Klonopin alone is becoming very ineffective (this goes in cycles) and Sinemet made me more irritable than I already am.....Thanks again for your help.
Medical Reply to Above
There may be a simple reason why you seem to be getting more tolerant of the effects of Klonopin. This drug is very long lasting (long half life) and stays in your system for up to several days. Therefor the usual drug holiday of 2 days may not be sufficient to be truly off of Klonopin. This is a good reason to use shorter acting drugs such as Xanax, which may not cause tolerance if 2 day drug holidays are taken about every two weeks.
Another drug to use may be Ambien. Tolerance (supposedly) does not occur with this sedative.
Date: Fri, 30 May 1997 12:11:46 -0400 (EDT)
I found your web page by accident looking for information about Neurotin. I take 2mg of Xanax daily for panic attacks. I have for many years had what I called shakes. I wake up and leg is shaking or wife wakes me up. I do have pain and discomfort but doctor had prescribed Tegretol for pain and it caused problem with my others meds.
I wonder if Neurotin would help. I have heard that it helps panic also, that is reason I was searching. Would it not be wonderful to find a med that would replace 2 or 3 others. I also take 90 mg of Paxil daily.
It sounds as if you may have RLS which is causing your leg pains. The leg shakes could be PLMD. Xanax may help both conditions (including your panic attacks). Paxil has the potential to worsen RLS/PLMD (although it may actually help some patients).
Neurontin is a good drug for RLS. It is definitely worth trying, but I am not sure how much it will help your panic attacks.
Date: Sun, 01 Jun 1997 16:48:55 -0700
Subject: Restless Legs?
Hello, I'm just looking around the net trying to see if anyone can help me. I am not from California but I figured it was worth a try anyway. Is it likely that if I'm only able to sleep for about two or three hours at a time due to waking when my arms and legs twitch uncontrollably that I may have this? I often find myself jolted or knocked out of bed by these movements and then trying to catch naps all day long to make up for the sleep I lose.
Your symptoms do sound as if you may have PLMD (Periodic Limb Movement Disorder). The legs and arms may twitch in batches every 20-30 seconds. These can indeed wake you up or prevent you from getting deep sleep. The result is that you do not get good quality sleep and do not feel well rested in the morning.
There is medication that can treat the symptoms very well (see our medication section on our web page), so check with your doctor for help.
Date: Mon, 02 Jun 1997 16:03:34 -0500
On my wife's suggestion I searched the Internet for "Restless legs" (although I've always called it "The twitches.). It's nice to know I'm not alone.
I am a 65 year old retired white male mechanical engineer of German and French extraction. Like my parents, I am a moderate drinker. I first recall RLS during a 4 hour bus ride at age 14. I am sure my father had the problem but he never complained. I would hear him rolling over and kicking in his sleep and cursing quietly. My mother said he was a "mean man" because he would kick her and punch her in his sleep. Dad had a traveling job for a while and he said he used to get out of the car at night and start running down the road for a block or two because "he would feel strange."
My aunt called me "ants in the pants" because I would never sit still. I vaguely remember always tossing and turning as a child and my mother telling me I never seemed to get over growing pains.
Thank goodness for a wife (an RN, incidentally) who was patient and realized that I didn't kick her out of meanness. Some of the kicks drew blood on her legs so I kept my toenails carefully trimmed and filed.
Some observations over the years:
1. Sometimes years would go by with no problem. Case in point, during two years in the Navy I had no problems. Then again, I have had times when "The twitches" occurred while I was standing.
2. As a child, the problem would only occur when I was confined and couldn't move..e.g. in a car, bus, etc.
3. Is it circulation? I can jog 5 miles before bedtime and still get the "twitches", in fact they may really be severe as a result of the jogging.
4. What brings it on? I used to write down my foods to see what I ate before a bad case of the twitches or kicking. It always seems to be related to cigarettes (when I was still smoking), alcohol, sodium, or tomatoes.
5. What helps? First, let me say that I am not a health nut but I do eat wisely and take vitamin and mineral supplements, cod liver oil, calcium, 2,000mg vit C daily. I've experimented with everything and never got results. I refuse (or at least prefer not) to drug myself up. I finally got some minor relief from potassium and I've been trying Folic Acid for about a year with good results. The kicking has disappeared and the twitches are minimized. The worse case now is if I have forgotten the Folic Acid for a while. I'll take a handful (about six, 800 microgram capsules) and I will be asleep within an hour at the most. When I travel I carry Folic acid in my pockets and if I get the twitches in the car or on the plane I take a few of them. THEY ARE NOT A 100% CURE BUT ITS THE BEST I HAVE FOUND SO FAR! If I have binged on Chinese food or a pizza, I might also have 1 or 2 potassium tablets.
If I have forgotten the Folic Acid for a period I usually fall to sleep immediately and
wake up 15 minutes later with the twitches. If it is a mild case I can sometime get rid of
it by some leg stretching exercises, followed by foot (especially the sole) massage and
then rubbing the legs from the foot towards the heart.
6. Strange but I have never had it in both legs at the same time. It's in one leg or the other. Actually it's never in the leg, it's in the ankle that I get the "twitches".
7. I heard someone mention trying NOT to move and the twitching goes away. I have tried this but it takes a LOT of will power not to move your legs. I have had minimal success with this procedure.
After reading some of the letters I realize my problem is not severe. Some of you are saints to endure what you describe.
To answer some of your questions:
As far as we know RLS is not related to circulation. Mild exercise is often helpful, but severe exercise may worsen the problem, as you have noted personally.
We are not sure what brings it on. Different people have different triggers of their RLS symptoms. The cause of RLS is of course not yet known.
You ask what helps RLS? You also answer much of that question, and as you have already noted many different things may help or hinder the problem. For more information on other treatments, see our RLS drug treatment page.
Date: Wed, 04 Jun 1997 14:25:12 -0700 Subject: RLS and Thanks Thanks for the information and support. For years I have had periodic spells of RLS, usually minor and rarely disturbing my sleep. However, recently, whether the effects of growing older (40), or exacerbated by a recent back injury to the S1 region, the spells have grown more frequent, more severe and more pertsistent. Only two other people I know had ever heard of this syndrome. It was a pleasant surprise to find your site.
Lots of things can worsen RLS, and back injuries are certainly a common one. RLS also gets worse with age. If your symptoms are severe enough, you may want to consider medication, as detailed in our web site's Comprehensive Treatment section.
It is strange that most people have never heard of RLS, even though it affects at least 5% or more of the population.
Date: Thu, 05 Jun 1997 22:56:44 -0700
From reading these e-mail, I see a whole bunch of solutions to the same problem. I've had RLS for 7 yrs, I'm 45 yrs old. I've gone from not sleeping at all & being unable to sit peacefully, to 4 hrs a night and now to 6 1/2 to 7 hrs a night and sometimes nights with nothing at all (no RLS) where I sleep deeply 8 1/2 to 10 hrs. (Once a week) I am working again after about 2 1/2 yrs of part time work or missing so much work, I'd get fired. Number one: Your body does not produce nor is low on Klonopin or Xanex or Sinemet. These chemicals are not something your body creates. It only makes sense. If there is something out of balance in the brain or the nervous system, then the imbalance is an imbalance of elements occuring in the body, right? Who cares if it's inherited or not, that doesn't solve the problem.
Anyway, I began keeping a diary about 1 yr ago. A very detailed diary of what I ate, what activities I did before bedtime and whether I got upset during the day or the evening before. After about 2 months I began to notice a pattern. I began looking at those things which occurred which caused me stay awake and which caused the RLS to get worse.
Number one: Whenever I got upset about something during the day. This would make the RLS worse. Now if I have an upset with someone at work or home or family I get it ironed out immediately or asap. I'd make sure there was some agreement about how things were going to be handled in the future so the upset didn't continue to happen. This calmed the RLS down.
Number two: I stopped drinking anything with caffeine in it. This was extremely hard considering if you have no sleep the first thing you want to do is reach for something which will help you wake up. Number three: What the person said about a diversion like TV, that added more sleep time also, or just daydreaming when going to bed, or finding something extremely boring to do about 1 hr before bed. For me it's reading a romance novel or something which has no shootem up bang bang or just listening to soft music, anything to calm the nerves.
Number four: Calcium/magnesium. 1 tblspn of powdered Calcium, 1/2 tablspn of powdered
magnesium and 1 tblspn of apple cidar vinegar, add 4 oz or more of boiling water. The
vinegar can be substituted with lemon juice, it needs an acid base so the body will absorb
the minerals. You can buy the "Cal Mag" formula at any healthfood store, if you
don't want to mix it, stuff like Cal Max, etc. If you get diarrhea after drinking it, then
your body is saying you either don't need the calcium or it isn't absorbing it which why
you have a shortage of it in the body in the first place.
Manganese works sometimes, I got 7 nights of uninterrupted sleep by just taking a 1/2 tspn a night in a glass of water. It is found in Epsom Salts. It tastes horrible just like the Cal Mag formula.
I also take Melatonin. Some folks can't handle it because it makes them feel groggy the next day. For me that wore off in abt 2 wks (the grogginess). I've taken it for 2 1/2 hrs now.
Once when my legs were really bad I got up at about 2:30 am and my boyfriend simply grabbed my feet and tickled them. When the ticklishness wore off, the RLS was gone & I slept a solid 8 hrs after 3 wks of 4 to 5 hrs sleep a night. The less sleep I got the night before, the harder it was to get to sleep the following night, the RLS was much worse.
The fact I had to face is - taking a pill is not going to make it go away. There is no one solution but a combination of solutions over a period of time (not 2 wks) which can help.
I had a friend who took psychiatric drugs, anti-depressants and then resorted to shock therapy in the hope of "curing" it. She is now a 35 yr old vegetable. Psychiatrists don't know what causes it, they just "try" this and that, step back and see what happens.
I too have spent thousands of dollars in vitamins, minerals, herbs and have gone to MDs and homeopathic doctors and chiropractors. Think of a solution as adding 30 min to sleep time or adding 2 hrs to sleep time. A little chiropractic here, some liquid minerals there. What are you willing to pay for a good night's sleep? With me it was whatever I could afford.
Keep track of what you take, how much and if there's an improvement. I stopped taking vitamins except some Vitamin C and B-1 when I began having nightmares. At times I was very jumpy, a chiropractor suggested potassium and that calmed me down some.
It has gotten me almost back to being normal again in about 1 1/2 yrs. I've slept pretty darn good now for 5 months.
Date: Sun, 8 Jun 1997 18:09:19 -0400 (EDT)
Subject: of course -- RLS!
First, I need to say a BIG thank you to those of you involved in this web site. It seems that I've suffered from RLS forever (and, I assume, PLMD given that my father and grandmother did and that my mother's always talked about how I kick off the covers at night). I'm 40 now and I can remember being in junior high classes with my legs going a mile a minute. While I had read an article about RLS 7 or 8 years ago, I never really knew there were effective treatments for it, nor that so many people suffer from it (and worse than I) until I found the RLS Foundation's home page and yours. It truly is nice to know that I'm not alone.
First, a little background: normally, my RLS has surfaced only when I'm particularly stressed out and/or overtired, and only at night when I wasn't able to fall asleep within 5 minutes or so. Occasionally, it would "kick up" a bit during the day or during the theater or movies. I would have episodes only once or twice a year at most.
Right now, it's gotten quite a bit worse - it hits me in the morning when I'm driving to work, during the day at work, driving home at night, and all evening long. When it's that bad, I know I'm destined to have a horrible night trying to sleep.
Back in September, after I found this web site and found that there were treatments available, I went to my primary care physician who had never heard of RLS. He put me on Ambien, purely by accident, pending my sending him some information I'd put together and his own research. Once that was in his hands, he wanted to start me on antidepressants because he'd fixed on the fact that RLS can be stress-related and because he is of the belief that antidepressants will help with stress. At the time, the RLS period had passed, so I passed on the antidepressants.
In February, I began pain management due to chronic shoulder problems (I've had surgery 3 times in the past 15 months with only limited success, and I'm facing another surgery later this year to repair a rotator cuff that I re-tore only 2 months after it was first repaired last fall). The pain management doctor started me on TENS therapy and put me on a low dosage (25 mg a day, at bedtime) of Elavil to relieve nerve pain and as a sleep aid. He knew about my RLS and gave his blessing for me to continue taking a half dose or less of Ambien, if needed. Everything was copacetic - the Elavil helped with my pain and the addition of the Ambien (5 mg or less) gave me a good night's sleep when I needed it.
A couple of weeks ago, I saw my primary care physician again to make a change in my allergy meds (I'm now on Claritin, Guaifed, and Flonase). While there, he asked me about my shoulders and I told him that there really wasn't much improvement following the latest surgery in April and that I was really upset about it. Also, I told him that my RLS had started up again. After asking me some questions, he told me he thought I was going through a "major depressive episode" and referred me to a psychiatrist who concurred. Because my insurance coverage is very poor in this area of medicine, it was decided to try to treat me through medication rather than through psychoanalysis, or a mix of the two. So, I've been on Serzone for the past two weeks (I'm now up to 300 mg a day in divided doses). Additionally, I was told to discontinue the Elavil and the Ambien.
The upshot is that, while I feel somewhat less depressed right now, I no longer sleep at night due to shoulder pain and RLS. I went back to my primary care doctor today and told him that the RLS was back, worse than it's ever been, and that I understood that antidepressants can make the condition worse. He's fixated on the fact that stress makes RLS worse and that antidepressants can alleviate stress. Therefore, he's made the connection that the Serzone, given enough time, will alleviate the RLS. He doesn't want to pull me off the Serzone; that I haven't given it enough time to work. I don't disagree with him there - I believe that I am going through depression right now and I want help with that. What I tried to explain to him was that a vicious cycle's been set up - I can't get to sleep right away at night because I'm brooding (and in more pain since I've stopped the Elavil); therefore the RLS starts in and makes sleep impossible. The next morning, because I haven't slept the night before, I'm overtired so the RLS stays with me much of the day (never mind that I'm a menace on the road). That night, the RLS is with me when I go to bed so, even if I could shut my mind off, my legs still won't let me sleep. And so forth and so on. His response was just that I have to give the Serzone more time. He wouldn't entertain the idea of letting me take a small dose of Ambien for a few nights, which would let me sleep and, hopefully, break that cycle. Right now, I just feel like everything's crashing down around me.
After all that long-windedness, my question is this: despite my doctor's feelings on the subject, will a half-dose or less (I have 10 mg tablets) of Ambien hurt me? I've read literature on Serzone and Ambien, and I can't quite figure out if the combination of the two would be harmful. I would greatly appreciate any guidance you can give me.
Thanks so much for "listening." Just being able to vent helps.
Serzone is an excellent new antidepressant in the serotonin uptake inhibitor class. It can however worsen or even help RLS, the effect depends on each individual patient. There is no way to figure out who will benefit or worsen, except by trial or error.
I cannot speak to your case in specific as I do not know all the details of your case, but in general bedtime sedatives (such as Ambien or Xanax) are used very often in conjunction with Antidepressants. Many RLS patients have depression and use most of the RLS medications on our web site list with their antidepressants. There should be no significant conflict except for some of the sedatives (excluding Ambien and Xanax) have the potential to cause mild worsening of depression in general, especially if used in higher doses.
Elavil is one of the older tricyclic antidepressant medications which has a significant sedative effect. If it doesn't worsen your RLS symptoms, then it may be a good choice for a bedtime antidepressant as it helps put people to sleep. Desyrel (Trazadone) is a newer antidepressant that also has prominent sedative effects. Both Elavil and Desyrel are often combined with medications such as Serzone.
Narcotic/pain killing medications may be helpful for both your shoulder pain and you RLS symptoms.
Let us know how you do with your RLS treatment. Since you have already had a good response to RLS medication, you should do well with most simple RLS treatments.
Carol's reply to above
Date: Wed, 18 Jun 1997 20:34:44 -0400 (EDT)
First, thanks so much for your speedy response and informative answer.
I wanted to let you know that I spoke with my primary care physician yesterday and he finally agreed to re-prescribe some Ambien (5 mg) for me. He's not happy about it and, if I'm still having problems in a couple of weeks, he wants to see me again. At that point, if he still believes that Serzone is going to take care of the RLS in addition to my depression, I'm going to ask for a referral to either a neurologist or a sleep clinic.
I popped an Ambien last night and, boy, did I sleep. It's by far the best night's sleep I've had in a long, long time. Hopefully, a few more nights like last night and the RLS during the day will ease up because I won't be so overtired. At the very least, I won't be such a menace on the road.
Thanks again --
Medical Reply to above
Glad to hear you are doing better. Email us with news on how you do in the future.
Another Update from Carol E.
Date: Fri, 4 Jul 1997 23:41:40 -0400 (EDT)
Hi, it's me again! Again, thanks for the web page and your speedy responses to all of us.
As I previously wrote, my primary care doctor finally prescribed Ambien for me to help me sleep. I was hoping that I'd sleep well enough that I'd be less sleepy during the day and less prone to the RLS being with me all day long. It hasn't worked as well as I'd hoped. I'm still unable to get to sleep easily 3 or 4 nights out of the week and I still don't sleep through the night (although my awakenings are much more brief, but I'm finding myself "jerked" awake which I never really used to feel). Obviously, this isn't going to do it.
I'm going to be seeing my doctor in a few days to review my progress on the Serzone and I want to ask him for a referral elsewhere for the RLS. My feeling is that, rather than seeing a neurologist, I should ask for a referral to a sleep clinic since I'm experiencing a multitude of different problems (is the chronic pain keeping me awake or is the depression... do I have RLS during the day now because the quality of my sleep seems worse or is it the Serzone... am I depressed because I'm not sleeping well or because because of the chronic pain -- it's rather like the chicken and the egg conundrum I think). I'd appreciate your opinion on where I should go from here.
Ambien is a very good RLS drug, but there may be other problems that are keeping you awake in addition to the RLS (as you have already queried in your email). Ambien (or any drug for that matter) may not help everyone equally and may not be able to solve all your sleep problems.
Serzone (like most antidepressants) can improve RLS, but is probably more likely to worsen RLS symptoms. It is often hard to know what to do when depression and RLS coexist.
A sleep study may be of benefit to help decide the full nature of your sleep problems.
Date: Mon, 9 Jun 1997 04:51:30 -0400 (EDT)
Subject: UPDATE AND REQUEST FOR HELP
(Note: previous letters is on page 3; March, 21 1997).
The treatment with Ultram proved quite effective until early June. I had also been taking Ativan to help my condition. I had been taking Ultram (50mg three times a day, and Ativan (.5mg) once each day. Unfortunately I was unable to follow the drug holiday that you had suggested as my sleeping was so bad without the Ultram that I continued to take it, when I may have been better served by enduring the difficult weekends without it.
I now find myself in a rather difficult situation. I am on a two week road trip on the way from Florida to Denver and the last three nights have been as bad as I can recall. I have been under extensive treatment over the past six months with a variety of medications. The best results were with Ultram, but I also had success for about a month with 400 mg of Neurontin and Permax. This proved effective for only about a month. Tylenol with codeine was also effective for about a month before I built up a tolerance for it. Also I was not very comfortable taking a narcotic.
Is there a good sleep clinic in Denver? Could you perhaps refer me to someone in Denver that may be able to help. Alternatively should I be looking at a pain clinic in Denver as my symptoms are rather sever pains in my calves. Any other suggestions would be welcome as I am getting very little sleep and the nights are particularly bad. Fortunately my wife is able to do much of the driving as I will not drive when tired.
Sorry for the rather long sad tale but its about 3am and you were the only reliable source I could turn to for some common sense advice.
Leon J. K.
You are indeed having trouble with your RLS and medications. The drug holidays are very important in general, and seem to be even more important in your individual case. The lack of benefit that you develop in about a month of treatment is fairly typical for the development of tolerance.
You really must take drug holidays with the sedative class (Ativan) and the pain medication class (Ultram) or you will continue to have tolerance problems. What might be a good idea is to go off only one of the medications at a time (2-3 days off Ativan one week then 2-3 days off Ultram the other week).
Permax is another good choice to use during the drug holiday periods. This should help tide you over the absence of one of the two drugs as detailed above. I am not sure why the Permax sopped working for you as tolerance does not develop with this medication. You may not have been using it correctly.
I do not think that a pain clinic would be helpful, unless they are familiar with treating RLS.
You may want to try the above treatment with the supervision of your physician. If you need to find a sleep physician in the Denver area, then check with the ASDA site in our links page. Let us know how you do.
Another Reply from Leon J.K.
Date: Wed, 11 Jun 1997 04:26:41 -0400 (EDT)
Subject: Re: UPDATE AND REQUEST FOR HELP
Thanks again for you prompt response. I have located the head of a sleep disorder clinic in Denver and will discuss your suggetions with him. The option of using Permax during a drug holiday is interesting and in fact is quite close to a suggetion which a doctor in Michigan suggested which was the alternating of Permax and the other two medications. In any event, I will get the guidance of the doctor in Denver and will let you know.
I noticed and interesting communication on your site related to the use of Enzyme treatment for RLS symptoms.I wonder if you have seen this and are able to offer an opinion. Again, thanks for the prompt response, it's good to know that somewone is there in time of need.
Leon J. K.
It sounds as if you are getting on track with your RLS therapy. There is no one "right" therapy for this disorder, rather a lot of educated trial and error, mixing and matching medications until the RLS symptoms are relieved with the absence of side effects from the medications.
The enzyme therapy theory is just a theory, not a proven therapy. There are a few anecdotal cases of patients being helped, but no rigorous medical testing of the treatment has occurred yet. I do not recommend unproven remedies, but I do offer them on our web page, especially when the side effects may be minimal.
Date: Mon, 09 Jun 1997 09:30:47 -0500
Subject: Sinemet to Permax
Reference: Patient Letters on RLS symptoms and Remedies - Page 2
In the "Medical Reply" on page 15 of 21 there was mention made of telling RLS suffers in an "upcoming Comprehensive RLS Treatment Page" how to add Permax in the proper dosage to avoid the rebound and augmentation of coming off of Sinemet.
My 84-year-old mother wants to get off Sinemet because of the side effects and needs to be able to tell her doctor, a neurologist, what dosage to prescribe.
Could you please give me this information? Thanks for all your advice and help.
Could you please let me know.
You are right, we did not specify exactly how to decrease Sinemet as Permax is being increased. There is no "formula" for doing this, however I can give you some guidelines. The Sinemet tablets can be cut in half and decreased by half a tablet every 3-7 days as the Permax is increased. The decrease by half a pill of Sinemet can continue as long as the RLS symptoms are being controlled by the combination of increasing Permax and decreasing Sinemet. If the RLS symptoms worsen while tapering Sinemet, then it should be maintained at at the same level until the increase in Permax fully controls the RLS symptoms. Then the Sinemet can be tapered by another half pill. Tapering the Sinemet to 2-3 of the 25-100 tablets is usually sufficient, but it is also alright to taper completely off the Sinemet.
Please do not do this change over by yourself, but rather with the supervision of your physician. Most neurologists would likely know how to taper Sinemet while adding Permax.
Date: Mon, 9 Jun 1997 23:39:55 -0400 (EDT)
Subject: Hope you can help us.
My fiend is a Renal Dialysis patient and also suffers from severe restless leg syndrome. The restless leg syndrome is the real problem we need help with. The doctors have tried Sinemet, Tegretol, Klonopin, and Lioresal. Nothing has worked. She is awake days at a time because of this syndrome. If anyone suffers from this affliction please can you help us.
Please E-Mail me at Wallerboat@AOL.COM with what works for you. We are at wits end and we hope the Internet family can come to the rescue.
Sounds as if your friend is a difficult case. Patients with renal failure can have very RLS problems that may be refractory to medications. It appears that she has tried several different classes of RLS medications, which have been generally used successfully in uremic RLS. The only major class of medication not tried is the narcotic/pain killers.
We will post you letter and see if we get any other recommendations for other dialysis patients with RLS who have difficulties with treatment.
Date: Tue, 10 Jun 1997 14:31:00 -0700
Subject: Wellbutrin and restless leg syndrome
I just recently found your web page. I've had RLS for as long as I can remember. I found the Medication page helpful and interesting. I've noticed that the Parkinson's disease meds all enhance dopamine. Wellbutrin is a dopamine reuptake inhibitor. I would think it would be helpful (but it is also a CNS stimulant, so it might be awful). I am a caffeine drinker and have tried numerous times to quit drinking it because of the RLS, but when I go without it, symptoms get much worse. I'm wondering if you've ever heard of that...is it possible that it is a transient, anomalous phenomenon?
Wellbutrin is a serotonin reuptake inhibitor, not dopamine. It does however have variable effects on RLS, improving in some and worsening in others.
Caffeine can worsen RLS. In your case, the withdrawal symptoms from cutting off caffeine are likely increasing your stress level, which in turn is worsening your RLS. If can stay off caffeine for a few weeks, this effect should wear off.
Subject: Need some answers
Date: Mon, 9 Jun 1997 21:54:44 -0700
I think my problem began during pregnancy. It started in the left leg. A dull throbbing feeling that would forbid me to sleep. All I wanted to do was walk or punch my knees and calves. Now here it is two and a half years later and it is now in both legs. Last night it had me up until three a.m. I want to cry because I can't stay still, can't go to sleep. I feel like I need to flex my feet to stretch out the muscles. Walk around shake my feet.
I don't know what this is, but I tried to talk to a doctor and he said he has never heard of this. Does he think I was making such a bizzare thing up? Also has anyone felt their feet were hot and keeping them out from under the covers helps some? I am a 28 yr. old female. Still waiting for answers.
You have written a fairly typical description of RLS (Restless Legs Syndrome). Pretty well everything that you noted is common in RLS sufferers. Treatment should be able to help you considerably (if not completely). Unfortunatley most doctors do not know much about the condition, let alone treating it. Please check with a qualified sleep specialist or neurologist who should be able to help you. You may want to come armed with a copy of the treatment page from our web site.
Date: Wed, 11 Jun 1997 04:05:34 -0500
Subject: Mention ICE!
I've been searching all night, (I can't sleep anyway) and your sight was by far the most comprehensive. I especially appreciate the medications breakdown. I have been diagnosed with RLS although my symptoms seem more like PLMD... I often have horrific leg jerks straight up into the air, like sitting position, and it will alternate legs.
Tonight's research ... connection to Diabetes mellitus, connection to alcohol abuse, did your sight mention these? I intend to check out the enzyme therapy, I'd like to see more alternative therapy given. Klonopin and xanax made me crazy. How many RLS/PLMD sufferers also have sciatica? I always felt they were connected for me.
My doctor reminds me it will be worse with stress, during my menses and if I strain my lower back. My treatment, when nothing else works, is ICE! It seems to stop the nerves from firing long enough to fall asleep.
I do not know of any connection of RLS to alcohol abuse. There are reported cases of some possible link to diabetes mellitus, but that is only a minor association.
Sciatica is so common that many RLS patients will have this disorder. There is no known link between these disorders.
We are trying to add alternative, non-medication treatments for RLS on our web page. Stay tuned for more in the future.
Karen's Reply to above
Date: Thu, 12 Jun 1997 00:51:56 -0500
The reference came from research I did last night. I printed alot of it out, if you are interested I'll look for the source again...tomorrow. Also on the sciatica, I asked because I have a book on message for sciatica , it involves very deep message, elbows are better than hands here, into the gluteus muscles.
I have a pair of stainless steel chinese balls for your hands that I routinely sleep with under those same points and it seems to alter the jerking. The pressure points I'm referring to are on both sides of the sacral area.They seem to help long enough to let me get to sleep or else I go to the icepack if it is extreme.
Thanks for the getback. Also on alternative treatments...I'm trying the grapeseed extract based on testimonials, about a month into it so too soon to say.
Date: Sun, 15 Jun 1997 15:42:04 -0400 (EDT)
Subject: PLMD in particular
I am a 71 year old male, ex athlete, who still golfs regularly and is is pretty good health considering I have RLS and PLMD. The initial sudden onset of PLMD was scarry and my body experienced spasms every 15-20 seconds all night long if I tried to sleep. To make a long story short, I finally found a neurologist who was patient, knowledgeable and understanding. We worked together for about 18 months before we hit upon a combination of medications that have returned me to some sense of normalcy (good sleep).
I take Depakote at meal times (Quite expensive medication) Sinemet 25/100, Sinemet 50/200 cr, Nortriptyline, and hydrocodone. We arrived at a schedule of these medications through clinical trial and error, noting, one-at-a-time the effects of the addition or omission of each. I kept a log of what I took, how much and when. At each visit, I would give the neurologist my written essay of what had transpired since my last visit, and we would mutually decide what to try next. When I felt that things were about as good as one might reasonably expect, I see him far less regularly.
I have been on this same regimen for the last several years and am doing OK. I would like to say that without sufficient amounts of hydrocodone, that some would consider addictive, (I tried to go off without having the serious PLMD symptoms disappear, but could not shake them without the minimal-for-me amount that I am now taking) but would not be able to function. I am grateful that I have a neurologist who understands human needs and is willing to provide them. I believe there is something out there that will help each one of us, and that each of us should be an integral part of determining what that something is. I also highly recommend the journal approach to helping the doctor help us is the way to go. It will make better use of his (or her) time. It is too easy for facts to run together in our minds when we try to reconstruct helpful information.
Thanks for your well written and informative letter. We also like to use journals to help decide drugs, activities, foods, etc. than may be helping or hindering. Every RLS patient should try to keep a log for a while to help understand their disease.
Date: Mon, 16 Jun 1997 10:07:56 -0500
Subject: RLS and Celiac Disease
Hi. I was recently diagnosed with RLS and PLMD. The funny thing is, I have also been
diagnosed with Celiac Disease--which is gluten intolerance. This two diseases may be
related. There is a wonderful website at
I have noticed that my bad RLS symptoms correspond with when I have accidental ingestion of food products containing gluten. I think it would be a wonderful idea to have people with RLS to view these websites and their links. If they have any of the other symptoms of Celiac Disease, they should be checked by a gasenterologist, the only qualified to do the blood testing which shows celiac disease. For me it has made an enormous difference!!!!
Please let people know that it is a possibility. The numbness is greatly diminished on a gluten free diet. There are food lists on the links at www.celiac.com. Please check it out and let me know what you think.
Thanks for your very interesting observations of a possible link between Gluten Enteropathy (Celiac disease) and RLS/PLMD. I have not yet heard of the association of these two diseases.
We will put your note on our web page and see if we get other responses from other Celiac patients who may have the same RLS/PLMD problems.
Date: Mon, 16 Jun 1997 04:42:17 -0400
Subject: Night Terrors and RLS
My doctor uses the term Restless Legs even though I have Night Terrors. My questions
1) Are they the same condition?
2) Does the medication information on your web page apply to Night Terrors?
Thank you for providing an excellent source of information on this topic.
I look forward to your response.
Night Terrors and RLS are two completely different conditions. Night Terrors occur during deep sleep (stages 3 and 4), tends to be more common in children (although it may persist into adulthood), and consists of very frightening episodes of vague dream like images which are usually very frightening.
RLS problems (as described on our web site) occur while awake, prevent the patient from sleeping, and are more common as people get older (although they can be present in children). PLMD (Periodic Limb Movements Disorder) is often associated with RLS (or can occur alone) and will present as leg jerks (or even kicks) during rest and even during sleep. PLMD may have some minimal confusion with Night Terrors as both may wake up the patient and have movements associated, but they are otherwise entirely different.
Sedatives such as Xanax may be helpful in RLS and PLMD and may be of limited help in Night Terrors also.
Date: Wed, 18 Jun 1997 17:57:49 -0700
Subject: RLS sufferer here...
I have always been having this sleeping problems since my childhood. It is on and off. Too many different doctors advised me of too many remedies which didn't quite work. When my sleeping problems attack, believe it or not, four nights in a row that I can't sleep until I am finally exhausted and fall asleep. Sometimes, though, I don't have this sleeping problem. It's on and off kind of thing.
However, when I switched to a new doctor, I mentioned to her about my sleeping problems. She evaluated me and one of her questions was if I have "restless legs". I asked, what do you mean restless legs? She explained that those are the feelings that you feel itchy or some sensation and you feel like getting up. Thank God, my answer was no because I never had those sensations.
That was a couple of months ago, April of this year. However, two nights ago, I was so sleepy - when I was just about to doze off, something wakes me up. I had this tingling, itchy feeling deep down inside my muscles, from waist down. And it makes me want to move myself to relieve it. Sometimes, I'm sure it's even causing involuntary movements. I also had this very irritated feeling because of this sensation. I feel like, there's someone controling my limbs, making me miserable.
Then I remembered, this was what my doctor had asked me if I had had before. The answer then was, "NO, I don't have it". But now, this must be it. I was so miserable. So now I understand that this is what she calls "Restless Legs Syndrome".
I need a fast remedy, because I cannot handle it. Although, I've read all your testimonies - I want a remedy now. I'll try those remedies I've read here, but there's gotta be something done to get rid of these "creepy monster" crawling inside me. I will be seeing my doctor who is a Sleep Specialist. This is just driving me crazy. I just turned 33 years old and I don't want to live with this - not even for another week. I'll update you guys after my visit with my specialist. I wish you all luck, to those who suffers like me. I know how you feel.
Sorry to hear that your RLS problems have worsened to the point that it is very hard to live with. This is actually quite usual with RLS, in that it generally worsens with age.
You should be able to get relief with one or more of the drugs (especially from the Primary list of medications) on our web page list. As you are about to see a sleep specialist, you should be better very soon.
Let us know how you do.
Lynn's Reply to above
Subject: Sinemet CR - 50 - 200mg For RLS .....
Date: Fri, 20 Jun 1997 13:10:26 -0700
Thanks for your quick response and best wishes regarding my RLS. I did see my doctor - he is a neurologist. I was evaluated and was told that my sleeping problem is not clinical but situational. So I mentioned to him about my RLS - he said this a new medical situation.
So, he put me on medication which is SINEMET CR - 50-200mg 1/2 tablet every night. And also instructed me to see him after couple weeks to see how am I doing with this drug. I did some reseach and and I have found out that this drug is for Parkinson's disease. How is my RLS become related to Parkinson's disease?
I will be taking this drug starting tonight. I would appreciate a second opinion before taking this drug. So your quick response will be again and always be highly appreciated by me.
Thank you very much!
Sorry It's me again! If possible I want to know from you, if the Sinemet CR 50-200mg that was just prescribed to me by my neurologist is not addicting. What are the expected side effects, and should this drug cure my RLS or just to give me some relief? Would this drug make me feel sleepy after taking it?
Thank you, for your response and having this website available for my references.
God Bless you!
Medical Reply to above
Sinemet is a Parkinson's disease medication. It helps Parkinson's disease by increasing dopamine levels which are depressed in Parkinson's disease. No lack of dopamine has yet been demonstrated in RLS and RLS is not in any way related to Parkinson's disease (except its response to Sinemet). We do not know why it works to relieve RLS symptoms, but it does usually help many RLS patients. Sinemet is not a cure for RLS, it is only symptomatic medication.
The main side effect of Sinemet is nausea (which can be avoided by taking it with meals). Some of the other side effects seem to occur mostly in Parkinson's patients, but not in RLS users. There is no addiction with Sinemet, but if the dose goes too high, problems with augmentation and rebound can occur (see our RLS Treatment page for more details). The drug should not make you sleepy.
In summary, Sinemet is a good RLS medication but should be taken at low dose. It can be combined with other RLS medications and is generally quite safe to use under proper guidance.
Follow up Letter from Lynn R.
Subject: So far, so good!
Date: Thu, 26 Jun 1997 11:39:52 -0700
It's me again Lynn R. It's been 8 days since the first night I started feeling this
tingling, pricking sensation from waist down. And then towards the day till Friday night
of last week it has gotten all over me from head to toe. Then, I told you about this
Lecithin 1200 (softgel) supplement that I took before going to bed that Friday night -
then, when I woke up at about 3 am my entire body was calm, just plain calm. Only then
occassionally 1 or 2 pricks were felt by me, next day. The rest of the days, until this
very moment, please believe me, I feel none. No tingling sensation in any part of my body.
I feel so good. My spirit is up - I'm a happy girl !
I will continue visiting this website from time to time update you on how am I doing.
Another Update from Lynn R.
Subject: RLS sufferer no more!
Date: Thu, 31 Jul 1997 11:39:01 -0700
If you remember me, I emailed you 2 or 3 times back in June when I was first diagnosed of having RLS, actually geralized (from toe to my scalp). I had the RLS continuously for 3 days and 3 nights then. My Neurologist prescribed me SINEMET CR 50-200mg., but I never started it. Instead of taking the drug, I started myself on LECITHIN 1200mg softgel and still taking it every night. I have not felt any sensations since I started taking Lecithin. Do you think this supplement has really something to do with it? Plus, I believe, a lot of prayers made it go away!
I wish all the sufferers their well being and best of health!
I know it feels, for I've been there!
I am not sure why Lecithin should help you. There is no medical literature on this topic. If it works for you, definetely continue the Lecithin. We will post your letter which may be of benefit for others.
Date: Wed, 18 Jun 1997 20:55:56 -0400 (EDT)
Subject: Comprehensive RLSTreatment Page
I read with interest that you would have a "Comprehensive RLS Treatment Page" Is it available yet?
I must stop the sinemet because of augmentation and you suggest there is a way to do this other than cold turkey.
To find our Comprehensive Review of Drugs used to Treat RLS/PLMD just click the appropriate links throughout the homepage. You can also type in the URL; http://www.rlshelp.org/rlsrx.htm
If problems with augmentation occur, then the Sinemet can be tapered slowly while adding another Parkinson's drug such as Permax. If you are not on other drugs such as sedatives or narcotics, then these can also be used while tapering off the Sinemet (to below 3 of the 25-100 mg tablets).
Date: Thu, 19 Jun 1997 02:40:38 -0700
Subject: Restless Legs
It is wonderful to be able to find people who understand exactly what I mean by restless legs. It is difficult to educate doctors let alone your acquaintaines and relatives. I had to quit work several years ago because my energy levels became so erratic.
I wanted to share my experience with medication. I started with sleeping pills that eventually stopped being effective and then went to Klonopin which helped for about 2 years. After that I switched to Sinemet which made my legs rigid and eventually made the condition worsen. My husband also said it changed my personality. I switched back to Klonopin (all of this under the care of a neurologist) but found in still to be ineffective. I am currently (and for 3 years) on extremely small doses of Trazedone. It is mostly effective but it is now 3:00 a.m. and I am having one of those familiar nights.
I do not have as much of the "restless" legs as I do myoclonas/involuntary limb jerking at this point. My arms are occasionally involved.
My Mother had a severe case of restless legs and suffered with it all her life. I have 2 siblings who also have it and one nephew so far. Given that it is reported that millions suffer from this, I have only met one other person so afflicted. My doctor has only treated one other patient with RLS.
Thank you for being there.
It is interesting that the antidepressant, Trazodone (Desyrel) helped your RLS problem, as it is responsible for worsening RLS more often than helping. There are still lots of other medications to try if you need more help for your PLMD/RLS problems.
Thanks for sharing the details of your RLS/PLMD problems with all the sufferers out there.
Date: Mon, 23 Jun 1997 17:22:06 -0500
Subject: Ice Cream, Gluten, and RLS
My RLS is bad when I consume gluten. Gluten is present in many ice creams. It is a hidden ingredient in Mono and Diglycerides and in Maltodextrin. I have not had bad episodes, to my knowledge, after consuming ice creams which have only ingredients such as milk, cream, sugar, and vanilla. Sometimes it can be these mysterious ingredients which make us sick. I will have to keep track of when I eat this gluten free ice cream to see if I have a bad night.
Date: Wed, 25 Jun 1997 07:28:43 -0400 (EDT)
Subject: RLS, AKA SCREECHES
I have just discovered that there actually is a disorder with the symptoms I've had since I was a little girl. I remember countless nights, as a child, with my dad rubbing my legs to help ease the pain. He used to think I had cramps and I would try to explain that there wasn't a knot in my leg and the pain was moving all over. He never understood but he continued to to rub anyway.
As an adult, I no longer have pain but suffer from occasional bouts of what I call excess energy. I feel as though I want to jump out of my skin. It often happens when I'm overtired or haven't had much physical activity. Since I always thought I was insane, I never thought of taking any medication. My only remedy was to walk around the house rapidily shaking my arms and legs or sitting down and bouncing my legs or sometimes punching them, until the sensations passed. My sister gave these symptoms the name "the screeches". The word describes what you want to do when you have these sensations.
Thanks for your great web site. It was so amazing to find out that other people suffer from these same symptoms. After reading the many letters, I feel very fortunate that I only have periodic bouts with RLS.
Date: Wed, 25 Jun 1997 00:03:13 -0700
Subject: RLS Information
Location: Tucson, AZ
This year is the first time I heard of RLS.
My symptoms are a restless feeling in the upper thighs and now a numb feeling in the upper arms.
For me 3 things work to releave RLS
1. Walking at night (known by many)
2. Cold temperatures. Keeping my legs cool. Around low 70's. Warm legs worsen the RLS.
3. Sleeping on my stomach. Why? I don't know. Perhaps pressure is releaved from a nerve.
Thank you very much.
Date: Sat, 28 Jun 97 19:42:00 -0700
Subject: Other names for RLS
My wife and I call it "eeeky", and of course we hesitate going to the doctor to explain my syndrome with the funny name. I was amused to read about all the other names people call this insufferable condition. Makes me feel better already.
Thanks for your name for the RLS. However, you should not hesitate to seek medical help for RLS, as most sufferers can achieve great relief from treatment.
Date: Mon, 30 Jun 97 14:16:01 -700
Subject: The twitch!!!
My wife and I have been married for four years now and the past two years we have had some bad sleep problems. My wife complains about my twitching which starts at about 4am. She says that I shake the whole bed with sudden jerks. My wife is a light sleeper and the only solution I can think of is to sleep in a different bed.
My problem sounds like it could be RLS but I am not sure. Maybe you guys can shed some light on our situation and maybe give us a solution.
It sounds as if you have PLMD (Periodic Leg Movement Disorder). This condition causes your legs to twitch or jerk in groups of 20 or so at 20-60 second intervals. RLS is quite different and is well described on our web page.
Treatment of your problem will depend on whether the PLMD is causing you to lose good quality sleep (from the leg twitching causing you not to go into deep sleep and thus causing you to be excessively sleepy in the daytime). If you are sleepy in the daytime (or having insomnia from the PLMD) then you may want to consider medical treatment. If you have no symptoms, but want to placate your wife, then twin beds slightly apart may be a consideration, rather than medication.
Date: Tue, 1 Jul 1997 04:17:40 -0400 (EDT)
Thank you soooooo much for this excellent information. I finally have some hope for improvement/relief.
In answer to a couple of the letters I read which inquired about the negative effects of Prozac on RLS: I had no symptoms of RLS whatsoever until I started taking Prozac a couple of years ago. Within a week, my legs felt like they were being electrically shocked every night, with uncontrollable spasms, continuing every few seconds for hours! When I told my doctor about this horrible side effect, she said she'd never heard of such a thing and basically gave me the brush off. Needless to say, I stopped taking the prozac and changed doctors immediately.
Since I am in need of an antidepressant medication currently, I'm now taking Zoloft instead of the prozac (life is good again!). I still have some symptoms of RLS, 'tho much milder and not with much regularity (thank god). When I do get the leg heebee jeebees in bed at night, I take Ambien which somehow gets me to sleep (and without any 'hangover'!).
Any comments, thoughts, suggestions are welcome.
Zoloft is the same class as Prozac. They both can worsen RLS, as in your case. We have no explanation as to why Zoloft causes less problems then Prozac (the Zoloft may indeed be causing some mild worsening of the RLS condition).
Ambien is of course a very good medication for RLS and usually affords RLS sufferers with several good hours of sleep.
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Click to go to the RLS Homepage, RLS Treatment Page,
Source: Southern California Restless Legs Support Group, Patient Letters and Medical
Answers Section, Page 4.
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