Patient letters on RLS symptoms and remedies- Page 47
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Sent: Friday, April 04, 2003 12:31 PM
Subject: RLS, Sinemet and fluid retention?
I recently did
a sleep test for sleep apnea where I was required to fill out a
questionnaire. Long story short, the questions they asked about my legs
led me to your web site which helped me to understand I have RLS. I am a 35
year old male and have always had it so I thought it was normal to kick big
holes in the sheets and blankets.
Luckily I found
a doctor that is somewhat knowledgeable about RLS and I have
started taking Sinemet 100/25. It's only been 2 days but it is definitely
helping (no tingling or obvious urge to move and I feel relatively refreshed
in the morning so far) but... I am still jerking awake especially while
I'm going to give this
Sinemet a try for 30 days but if the
jerking doesn't stop should I consider increasing the dose or switch to one
of the other Parkinson's drugs you recommend instead of Sinemet? Also, I am
retaining water, is this normal from Sinemet and does it matter?
Thank you for
the very helpful site!!
You may need a larger dose of Sinemet to relieve both the RLS and the PLMD
(leg kicks). The problem is that with the larger doses, Sinemet causes
worsening of RLS (augmentation and rebound). It is much better to take
Mirapex or Requip which rarely cause these problems.
Water retention is not a usual side effect of Sinemet (or other Parkinson's
disease medications), but is generally not a concern in patients in otherwise
good health under 65 years old (or even older).
Sent: Saturday, April 05, 2003 3:31 PM
I had been a member of the RLS support
group on-line a few years ago but I cannot find it here on the RLS web site.
I want to advise the group of something
my neurologist told me about. He advised that I try Vitamin B1 or Thiamine.
I started taking 2 ( 100mg) pills and the symptoms were reduced by about
95%. Just wanted to pass this on.
Many RLS patients have tried various vitamins (including B1 which is thiamine)
generally without success (likely less than 1%). The B Vitamins are all water
soluble so when taken in excess, they are simply excreted in the urine.
I will include this on our website to see if others can benefit.
Sent: Monday, April 07, 2003 8:46 AM
Subject: tramadol and RLS
I am a 44 year old woman, without obesity or
risk factors for apnea. I finally recognized myself as having RLS and PLM
about a year ago. I never knew what it was before. Tramadol (Ultram) 25 mg
at bedtime and
sometimes another 25 mg earlier in the evening, depending on what I am doing
(plays and quiet dinner parties are torture without it), works well for me.
I can rest without the constant twitching, etc I had before. I wake feeling
rested now. However, I still sometimes have daytime drowsiness. I am usually
unable to read anything without falling asleep. I even fall asleep when
reading out loud to my son. I will wake myself up as I hear words coming out
of my mouth but don't know where I am on the page.
I infrequently feel very drowsy when driving, even short
periods of 20-30 minutes, and have to fight to stay awake. Sometimes at
work, I would feel so sleepy, I would go into the bathroom, close my eyes
and dose off for just a few seconds, minutes to try to get relief. That
usually does help but is really annoying. Caffeine sometimes helps too.
Anyway, I have toyed with the idea of having narcolepsy,
but I never uncontrollably go to sleep, don't have the cataplexy, etc - just
intense drowsiness and the ability(!) to fall asleep at the drop of a hat if
I sit still very long. I have never had a sleep study but have resisted due
Is a sleep study of any value? If I have symptoms of
RLS and PLM and it is relieved by tramadol, what will the sleep study tell
me? If I do a sleep study, how long would I need to be off the tramadol to
not effect the results? A sleep study does not help diagnose narcolepsy, does it?
Is there anything else that could be wrong? Is
there any problem with taking tramadol long-term? Any reason I would want to
switch to Mirapex? Is it reasonable to switch to Mirapex without a sleep
study and see if the daytime sleepiness abates and then, if not, do the
A lot of questions. Sorry. My doctor is
sympathetic but not too knowledgeable about this. Thanks for your help.
Tramadol is a reasonable drug for RLS but may not be as good for PLMD (which
could be the cause of your excessive daytime sleepiness). Mirapex is a better
RLS drug and a much better PLMD drug than tramadol.
It might be reasonable to change to Mirapex and increase the dose until your
RLS and daytime sleepiness gets better. If you still have daytime sleepiness
despite a reasonable dose of Mirapex (about .5 to .75 mg), then a sleep study
would be in order. Narcolepsy (not all have sleep attacks much different than
you describe) and sleep apnea (occurs even in thin people) should then be
Sent: Tuesday, April 08, 2003 12:29 PM
Subject: RLS, Sinemet and decreased sodium intake
I started with RLS about 8 years ago.. tried
muscle relaxers for two years with no relief. A neurologist recommended
Sinemet. RELIEF at last! Must take at least an hour before going to bed. (
I found it acts as a diuretic and I urinate a lot in about an hour after
Still didn't stop daily problem of sitting for any length of
time and developed especially problems after lunch of high sodium lunch.
after years of apologizing to clients for having to stand up and complete
interviews I finally tried watching my sodium intake and now seldom have RLS
as long as I take Sinemet an hour before bedtime. Try watching sodium
intake and see if it helps over time.
Been great for 3 years. But also
know without Sinemet I can forget sleep until wee hours of morning. At one
time I went with about 3 hours of sleep and was working 7 mornings a week..
After 3 weeks I was consuming anything I could get my hands on to sleep.
Someone left some type of liquor in the refrigerator. I am not a drinker) I
it down holding my nose, it tasted like drinking antifreeze! That was when
I went for help but my family doctor didn't know what to do so tried muscle relaxers,
several, all but one put me to my knees, felt numb in places but no help for
Try Sinemet at night and watch your sodium intake.
Sinemet is alright at low doses, but can markedly worsen RLS when taken at
more than 2 of the 25/100 tablets per day. Mirapex or Requip works better and
can be taken an hour before you sit in the daytime.
Sent: Thursday, April 10, 2003 1:34 PM
I was diagnosed with RLS several years ago and have used Sinemet from the
beginning. If I am even late with one dose, the restlessness takes over,
moving from my legs up into the abdominal muscles and one time even into
my chest and throat.
I am afraid to think what would happen if I ever
ran out of the medicine . At one point a doctor told me that all I had
to do to cure my RLS was to discontinue the Paxil I take for anxiety.
Wonder which is worse - anxiety or RLS?
Thanks for listening,
Paxil may worsen RLS, but may also not affect the disease or sometimes even
can make the RLS better. They only way to figure out what it does to you is
to stop it and see what happens. If Paxil is worsening your RLS, then one of
the other medications may work better (Serzone, Wellbutrin for example).
Sinemet is not a good medication for RLS if you are taking more than 2 of the
25/100 tablets per day. Mirapex or Requip are better.
Sent: Saturday, April 12, 2003 2:12 PM
Subject: Need Help, Please, for 82 Yr Old Mother
Thanks for this great
website. My Mom is 82 and has a severe case of RLS and getting worse. Don't
know how much more she can take. Not only the legs, but
arms and whole body jumps. The nights are really bad and afraid she'll take a
She eats Neurontin and also takes Klonopin and Tylenol with
Codeine. Been on
the Neurontin for quite some time. Takes some Lamectil too. She's tried Mirapex,
but that didn't seem to agree with her although she may have taken too much
Sinemet augmented her symptoms.
Last time at the doctor, I asked if there was
anything new on the horizon; he said, no. Mom is pretty healthy, no high
It may be worth trying Mirapex or Requip, but increasing it slowly as
tolerated (usually not quicker than on a weekly basis, and then possibly by
only 1/2 of the smallest tablet).
If her RLS is that bad, I would have her stop the Tylenol with codeine (which
is only a fair narcotic for RLS) and change to a better one such as methadone.
Bonnie M., Lethbridge, Alberta, Canada
Sunday, April 13, 2003 6:15 PM
: Severe RLS, should I start Neurontin?
I was wondering if I should be on Neurontin.
I have had fibromyalgia and chronic fatigue and restless legs (legs, feet,
forearms and hands) for years but it is getting so bad I sometimes want to
die because the pain and burning (sharp metal jaggy pain, ice pick pain,
numbness , jerking, punching, and kicking.
I am alone when I do this - on the
couch, in bed etc.). I isolate myself because of this terrible pain and
the horrible feelings in my muscles and of course, arms, hands, feet, and
legs. I hardly ever sleep. I cannot concentrate very well on
anything else for very long because of these symptoms.
First, have your doctor prescribe Mirapex or Requip (as per our
RLS Treatment Page) If that
does not help, then Neurontin may help somewhat. For severe RLS (which is
what you are describing), you will likely need a strong narcotic (such as
methadone) in addition to Mirapex/Requip or Neurontin.
Sent: Monday, April 14, 2003 7:19 PM
Subject: Zyprexa helps my RLS!
I have had RLS for about 5 years. About 4 months ago I started taking
Zyprexa for depression. After several days I realized my legs were not
jumping. I was currently on Ultram and Xanax.
It has been 4 months since I have taken anything for RLS and my legs do not
bother me anymore.
I don't know if the medicine it will help others, but I just wanted to share
this information with you.
Antidepressants more often worsen RLS, but a
minority of RLS sufferers improve with this class of medications (and clearly
you are one of the lucky ones).
Sent: Monday, April 14, 2003 7:16 PM
I've been wondering why someone would have PLMD all by itself? What kinds
of maladies cause it? I have RLS, which .15 mg daily of
relieves, but lately my bigger sleep problem is related to my husband's
'kicking,' as I call it. I'm beginning to think he has PLMD. He claims
it's the nerves in his back making leg cramps and so he moves his legs,
but I don't buy it because he does it unconsciously.
There are nights I
want to cry because there's no place to go if my kids are home and he's
doing these intermittent kicks and then 'poom!' -- his leg hits the bed
and I'm startled out of the sleep I'd almost achieved. I start to drift
again and then 'poom!' -- the bed shakes me awake. After 10 of these there
is no hope of sleep and one of us goes to the new couch which -- uh, oh!
-- has turned out to be too short!
Seems like this happens to him mainly in the almost asleep stage
(though maybe it's deeper than that because he doesn't wake up if I say
something). He had a sleep study and was diagnosed with sleep apnea about
8 years ago (he didn't do much about it), but didn't mention anything then
about PLMD. It seems like a recent development to me -- as in just a few
years -- but I don't remember lots of things well. I'm working on getting
him to go in for another sleep study. He's not crazy about the idea,
having gone through it once already.
I was also wondering if the CPAP machine has only become available within
the last 8 years? When he had his sleep study, they only gave surgery as
an option. Could the sleep apnea be related to the PLMD (if that's what it
is)? He definitely stops breathing at different points during the night.
We do not know why people have PLMD with or with RLS as the cause of these
diseases are completely unknown.
If your husband is not sleepy during the daytime then he does not need anymore
investigation for sleep apnea or PLMD (as in this case, these problems are not
occurring frequently enough to be clinically significant enough to disturb his
sleep). If he is very sleepy despite CPAP (which has been available since
about 1985), then he needs a repeat sleep study.
The PLM's that bother you can be easily taken care of (without even given your
husband medication). Simply get twin beds and separate them by about 4-6
inches at bedtime, and any of his kicks will not be transmitted to your bed.
Second letter from Margaret
Sent: Monday, April 14, 2003 7:41 PM
Subject: Pergolide concerns?
I just discovered the Mayo Clinic report on the
three women who had heart valve replacements, apparently as a result of
taking pergolide. I think I understand the basics of the information cited
-- about its being an ergot derivative, that this was the only thing they
had in common, that they need to do a cross-study of more people to see just
what percentage of people have this side effect are. The woman with RLS (the
other two had Parkinson's) had taken a total of 1.5 mg total a day (6 tablets
of .25 mg six times daily).
I've been taking .15 mg of Permax for 1 or 2 weeks, having transitioned
off of Requip before that. It's heaven not to have RLS at all at night.
I had taken Requip for about 8 months (three tablets of .05 mg 1-2
hrs before bedtime). This followed about 5 years of Permax, which had been
successful when I took it at the right time of day and didn't drink much
Last August, I saw a doctor in another state, who changed me
to the Requip. I am not sure why he changed me from the Permax. He was too
far away to continue seeing, so when the Requip stopped working as well,
I found a local neurologist who specializes in sleep disorders. She told
me that .15 mg of Permax is a 'teeny' amount and that she prescribes it
for most of her patients.
After that, I read the Mayo clinic article and got concerned because I
also have mitral valve prolapse. Can this make me more at risk for
the valve deterioration that the women in the article experienced? I
intend to see someone about getting the test you do
to check for heart damage. I go back to see the neurologist in a few
Do you have any comment on any of this?
The jury is still out whether or not to worry about Permax and valvular
problems, but it would be prudent to use Mirapex or Requip instead. If
tolerance develops to Requip (as in your case), then changing to another
dopamine agonist is often helpful (as it seems to be with you).
It might be better to try Mirapex as a substitute for Requip in light of the
concern over valvular problems. Mitral valve prolapse has nothing to do with
the above concerns with Permax.
Anyone on Permax for prolonged periods of time needs periodic echocardiograms
to check for valvular problems.
Monday, April 14, 2003 9:09 PM
Subject: RLS better with Myoflex.
I have had restless leg syndrome now for
approximately a year. When I first developed this condition, I thought it
was standing on my feet in one position for so long (at my job) that was
causing the problem. In the last several months, I have had increased
sensations of "drawing" and this horrible feeling of "pulling" which in turn
would result in a leg spasm.
These leg spasms have caused my feet to draw up
and jerk at the same moment. As others I know with this condition, my legs
would start this in the early evening. Lately, I have noticed that this
"drawing and pulling" sensation have become a part of my daytime routine.
Its not only in the evening I'm experiencing them anymore.
The only relief I
have gotten without prescription drugs is to take a very hot bath about 15
minutes before bedtime, then to rub Myoflex on my feet, ankles, and legs.
Without this, I could never get to sleep. For some reason, the Myoflex seems
to desensitize and somewhat quell the sensations. The active ingredient in
this is Trolamine Salicylate. Why this seems to work for me, I don't quite
But massaging the foot only gives me temporary relief,
then as soon as I stop, the feelings come right back. This may or may not
work for someone else who may be like me, reluctant to try prescription
medicine that have low to medium risks.
The fact that your RLS is occurring in the daytime is likely indicating that
it is more than mild and approaching a moderate range of severity. If you are
coping well with your current remedies, then there is no need for prescription
If however, your RLS becomes worse and interferes with your life, then the
risks of medication will likely be outweighed by the benefits.
Sent: Tuesday, April 15, 2003 12:17 PM
I'm a 40 year old female who has had RLS for
years. I've had RLS as long as I can remember. I approached a couple people
when I was younger, but had a negative response. I was told to relax.
and legs and it seems even my whole trunk has been affected. I never
mentioned it to anyone again for years. I got married and didn't say anything
to my husband. I thought he would think I was crazy. I thought I was
'controlling' my thrashing since he never said anything to me.
came around and I accidentally came across the information on RLS anxiously
showed my husband, who I was SURE would still think I was crazy. He was not
surprised in the least that I had RLS! And at last I knew I was not the only
one who was so restless. I still was afraid to mention it to anyone who did
not understand. I cautiously confessed to a few other people I had it only
after they had mentioned it. It gets so bad, I can REALLY sympathize with
people who say they want to attack themselves. Last year, I mentioned it to my
family physician, who prescribed Quinine, which did not help. I was so
frustrated, I did not mention it again to my physician.
I recently was very sick and was
hospitalized. The RLS really bothered me at this time and made my whole
experience worse. I walked the halls with my husbands support and massaged my
legs while talking to the physicians. We mentioned it to the physician, and he
was very sympathetic. He told me he could give me a sedative and something
for anxiety. I accepted. I'm not a depressed person by any means and I am
psychologically sound. IT felt weird to accept help with this type of drug.
could try it and it would be great if it helped.
I've been taking Clonazepam
for a couple weeks now and it really seems to be helping. I'm taking a half
of .5mg tablet at nighttime. My family physician is still not knowledgeable
on Rosebud I will pursue continuing with treatment. Your treatment page is
great .The categories helps me understand the different drugs and how they
are used for Resist Clonazepam safe to take every night? I'm to take it 'as
I never know when RLS will strike so I would not be able to prepare
for it by taking clonazepam whenever. Is it likely in time I would have to
increase the dose? I'm grateful for the help I'm getting. At this time I think
this is the best treatment as no one should suffer with RLS.
Although Klonopin (clonazepam) is in most of the textbooks as one of the drugs
of choice for RLS, it is a drug that I personally do not like to prescribe.
It works great at first (at often for many years), but it is an addictive drug
and tolerance to it occurs in a very high percentage of patients. In
addition, it has a very long half-life which causes the drug to be present the
next day causing daytime fatigue or drowsiness (which may often not be obvious
to the patient).
Mirapex or Requip are much better choices for RLS. They can be taken every
day at very small doses. If you want an as needed sleeping pill, Ambien is a
much better choice than Klonopin.
Sent: Tuesday, April 15, 2003 1:08 PM
Subject: Vicodin for RLS
Thank you so much for
your informative site. I take three .125 mg of Mirapex each evening but it
still does not relieve my restless legs. I am now taking 1 Vicodin at night
and this relieves the RLS and allows me to sleep a few hours. Will the
Vicodin become an addictive drug taking this amount? My doctor is really
doesn't want me to take it all the time. Would more Mirapex be too much?
The average RLS patient needs between 2-6 of the Mirapex per day. Increasing
the Mirapex slowly (by one tablet per week) until your RLS is under control is
a very good idea.
If you need Vicodin daily (if the higher doses of Mirapex do not help or you
cannot tolerate it), then alternating it with the non-narcotic pain killer,
Ultram (tramadol), will prevent any chances of addiction/tolerance occurring.
Sent: Tuesday, April 15, 2003 11:27 PM
vitamins for RLS
About four months ago, I started having restless
legs syndrome, and it was pretty serious. I could not sleep and it was
driving me crazy! I did some research, including reading your website,
and I decided to try vitamins, because some people said they'd had luck with
I am now taking Calcium, Magnesium, and Iron,
in high dosages. I have not had RLS for the past month! It is such a relief,
and I can't think of anything else it could be besides the vitamins. I know
how awful it is to try to sleep with RLS, so I am writing this in hopes that
maybe other people will try and will have the same result with vitamins that
Also, if I lift my legs about five inches off
the ground while lying on my back or stomach, for anywhere from 15-30
seconds, 5-10 times, after I am lying in bed and the RLS starts--that seems
to help calm it down, too. Sometimes I can feel it happening just a little,
but if I do the leg lifts, it goes away.
I am so happy to be able to sleep again!
Sent: Wednesday, April 16, 2003 4:35 PM
Subject: RLS Prescription Questions
I found your website recently and wanted to get your opinion on the symptoms
I am experiencing with RLS. Actually, my husband and I discovered I had RLS
last year when every night I was kicking my leg in the bed over and over
making us sleep in separate beds most nights. I finally went to the doctor
last September and was placed on Levodopa/Carbidopa - ER TAB 25.
The first prescription was for me to take one at night before going to bed.
Within a month or so, I discovered that I could not sit in front of the TV
at night because of my legs having the sensation I had to get up and move
and also, the one day of the week I was allowed a nap, I could no longer
take one due to the legs acting up. Upon calling the doctor, he increased
my dosage to twice a day (once in morning and once at night).
Now my latest symptoms are all centralized in my feet. Most nights, about
an hour into sleep and then an hour before I wake, my feet begin the
sensation that brings my out of a deep sleep. The clincher was that last
week I was on vacation and upon sitting down to watch a movie at night, I
had to get up every night to move around because of the sensation in my
feet. I thought that less stress would bring a really symptom-free week!
I read through many letters on your website and discovered people with RLS
are trying all kinds of drugs. I am ready to contact my doctor again
because I am now starting to experience sleep deprivation due to these
recent symptoms. I am so disappointed since I am already on a prescription
that I had hoped would bring me back to normalcy. Now I see that the
prescription held for a month or so, and now the symptoms are beginning.
Sorry for the lengthy letter, and by the way I am not a lazy person ( as I
am reading back on this letter). I stay busy during the day with a 2 and 4
year old, so I really do not notice any symptoms in the day (except for the
once a week nap).
I would be grateful for any advice you would offer on next steps to try as I
contact my doctor.
The problem that you started out with was not RLS but rather PLMD (the leg
jerking problem). Treatment with Sinemet (your generic Levodopa/Carbidopa -
ER TAB 25) often brings on RLS (the unpleasant sensations in your legs when at
rest). Increasing the Sinemet helps for a while then worsens the RLS
(augmentation and rebound).
You should wean off of Sinemet while starting and increasing either Mirapex or
Sent: Friday, April 18, 2003 2:32 PM
Subject: Newly diagnosed with old RLS
First, I would like to compliment you on this outstanding website and
information source. I don't think I've ever found this much helpful
information on a medical condition anywhere, and it is especially helpful
for such an under-researched, under-diagnosed, and misunderstood condition as
I am a 37 year old male in good health and in good shape, with the exception
of poor sleep. I was recently diagnosed with moderate sleep apnea, and
prescribed CPAP therapy. In the CPAP titration study, multiple PLM arousals
were noted (there were none in the first).
It was suggested that the PLM's
might be secondary to the apnea (so they were not treated), but I soon
figured out that they weren't going to go away because they were not in fact
secondary to the apnea. I have had symptoms of RLS since childhood, but I
did not know that they could -- and in my case did -- intrude into sleeping
moments as well.
Anyway, while my sleep did improve on the CPAP, I found that I would wake up
at regular intervals -- the most regular was about 60-90 minutes after
falling asleep. Then about every 90 min - 2 hrs after that. Usually after
waking up I would just roll over barely remembering the event, but sometimes
I would wake up completely and fall back asleep.
Recently, I began to have
trouble falling back asleep. For several nights in a row, I would fall
asleep for and hour or so, wake up, and then not fall asleep again until 4
or 5 in the morning (I get up between 7 and 8).
So, I went back to my doctor to see what to do about the PLM'S. Previously,
he had suggested treating the PLM's w/ Mirapex.
However, when I went in for
the office visit, he suggested Neurontin 300mg before bedtime (he also gave
me samples of Mirapex, in case the Neurontin did not work). The reason he
gave for the change is that, as a 37 year old, he did not want to mess with
my dopamine system.
After researching Neurontin, I was wondering whether he
might have been engaging in "therapeutic deception," and prescribing the
Neurontin for its sedative and anti-depressive effects, because I had been
reporting remaining awake from 1-5am.
My question is, is Neurontin a safer
drug to use because of my age? Is this an effective drug for treating mild
cases of RLS? Will it last through the evening?
Another question. I have read here and elsewhere that amitriptyline can
aggravate RLS. I take 10mg nightly for migraines. Can a dosage
this low have affect RLS?
Thanks in advance, and keep up the good work!
Neurontin and Mirapex are equally safe drugs for RLS sufferers at any age.
More RLS/PLMD patients will respond to Mirapex, but some may do better with
Elavil (amitriptyline) usually makes RLS worse (even at low doses of 10 mg), but this can be
quite variable with a small minority of RLS sufferers even improving with this
Medical A Reply from
Sent: Monday, April 21, 2003 12:42 PM
Subject: RE: Newly diagnosed with old RLS
Thank you for your quick
reply. I hope that you would not mind if I asked a couple more questions:
1) Which of the two drugs (Mirapex
and Neurontin) works best for controlling PLM's? While I have RLS, it is
mild and usually does not need to be treated. But the PLM's are a
problem. I have a mild case of PLMD (maybe worse as I did not hit REM in
my sleep study), but for me nearly all PLM's result in arousals (or
complete awakenings). While my neurologist recommended Neurontin, it's my
call. (After 4 nights on Neurontin, I have noticed an improvement, but I
have had awakenings that I assume are PLM-related.)
2) How long does it take for
Neurontin & Mirapex to start working -- i.e. how soon before bedtime
should they be taken so they will be available when I go to bed, yet last
through the evening? Will both medications last through the night, or
does one last longer than the other?
3) I have begun to notice
that sometimes immediately after exercise my legs are tingling -- like
when they "fall asleep," except not as intense. The feeling lasts a
couple minutes. At first I thought this was circulation-related (I first
noticed it while cycling), but I've also noticed it a couple of times
while doing "upright" exercises. Is this an RLS-related phenomenon?
1) It is very difficult to answer if Neurontin or Mirapex is better for
PLMD as there is so much individual variation. My impression is that
Mirapex may help more patients than does Neurontin.
2) Both drugs should be taken about 30-120 minutes before bed (again large
variations among patients). Both drugs may last 4-8 hours depending on the
dose taken. This can only be determined by trial and error.
3) It is possible that those symptoms are RLS related but unless they are
associated with an urge to move your legs to relieve the symptoms, then it
is less likely RLS related.
Sent: Friday, April 18, 2003 4:53 PM
Subject: RLS help without prescription medication.
I'm a 55 yr. old woman who has suffered intermittent restless leg
syndrome since childhood. I'm reluctant to take pharmaceuticals so have
been trying to get a grip on this awful affliction through alternative
Things that help: magnesium, calcium, hot milk, hot baths, psyllium whatever to keep the bowels moving well , even an occasional
colonic irrigation or enema helps, NO caffeine, alcohol, as little
sugar as possible, and lots of water and soothing herbal teas .
Panicking during seemingly unbearable seizures is the worst thing you
can do . I do leg exercises such as side kicks while laying on my side,
I get up and have a hot bath with some lavender essential oil, and
BREATH , deeply.
Yoga does seem to help as well. Before a concert or
plane trip, light food and psyllium the night before. Orgasm never
hurts, that's for sure! I know it's worse when I'm constipated at all
or under stress.
I hope some of this info will help someone out there .
Sent: Tuesday, April 22, 2003 4:10 PM
Subject: Insomnia with Mirapex?
I have had RLS for about 4 years, and have been taking Mirapex,
successfully for about the last three yrs, I have upped the dosage from
one .125 pill to three, a few hours before bedtime. Increasingly, I
have developed insomnia, waking up after only 3 or 4, sometimes as
little as 2 hours of sleep. I did read on a web site that insomnia could
develop as a side effect of Mirapex, also frequent UTI's, which I have
also recently had.
I am desperate for sleep, as you can imagine,
and resorted to some pain pills, Percocet, two nights ago. Three of
the 5 mg. pills spaced out thru the night produced sleep, but the
"hangover" the next day was intense. Today my neurologist prescribed
Klonopin, reducing the Mirapex little by little, and increasing the
Klonopin up to 3 of the .5 mg tablets per night. What is your advice?
hesitant to take this drug, as there could be drowsiness the next day,
liver damage? Your suggestions would be really welcome. I would like
to get off all pharmacy drugs, and use natural, but have never had much
success with them for RLS. I also take 4 Ibuprofen twice a day for
arthritis. I am 65, active, in good shape.
Thank you for any help you
can give me.
Mirapex can cause insomnia although strangely enough, sleepiness is a
more common side effect. Changing to Requip may or may not work better
for you (only trial and error will let you know for sure).
Small doses of narcotics such as Percocet may be helpful, but 3 tablets
in one night is a very large dose.
Klonopin is not one of my favorite drugs as it very often (over 80% of
users) causes daytime sleepiness, often not well perceived by the
patient. It is also an addictive drug which may cause tolerance to
occur with time (it works great for RLS when first used).
Sent: Friday, April 25, 2003 1:13 PM
Hormones and RLS
I have found your website very
informative, thank you! My question is could hormone replacement help
relieve my RLS?? Three years ago I had an attack of ischemic
colitis. I was 51 at the time. The doctors immediately took me off
of the estrogen that I had been taking for 10 years following a
complete hysterectomy. Shortly thereafter I started experiencing
severe RLS which I have tried treating in many ways.
Currently I am taking Mirapex. I am
wondering if the sudden change in hormones could have brought on the
RLS and if taking estrogen in patch form may help with the problem?
My doctors are considering putting me on an estrogen patch.
I am desperate for help as the RLS has
really reduced my quality of life. Thank you for any insight you
Hormones can certainly influence RLS, sometimes positively but other
times negatively. Many female RLS sufferers notice fluctuations in
their RLS during their menstrual cycles and many have significant
changes with menopause or hormone replacement after menopause.
It is certainly worth trying estrogen as you may get better, but whether
you will improve, get worse or better is unpredictable.
Sent: Friday, April 25, 2003 1:30 PM
I am so happy to have found this site. For the past
several years I have had problems with my legs at night. It seems
that around 9 pm (when I am either in bed or lounging on the sofa), I
get a dull ache that sometimes feels like bugs crawling on the inside
of my leg bones. My only relief seems to be 1000 + mgs of Ibuprofen
and sleeping on the floor for the relief that the pressure of a hard
surface brings. I think I have only slept through the night once in
the past several years. My husband complains that I twitch throughout
the night when I am in bed (interrupting his sleep), so I usually start
off in bed and the first time I wake up...I am on the floor the
balance of the night.
More recently I find that about 7pm every night, my
legs and sometimes my arms start to itch, much like I have hives. I
have tried changing soaps, detergents, everything, and the only thing
that stops the itching is Benadryl, which does help me initially get
to sleep. I recently found out my Grandmother suffers with RLS and
is taking some kind of depression medication. I was wondering if RLS
might be my problem too.
About a year ago I went to my Dr. and explained the
aching and itching. I had extensive allergy testing and nothing
showed up. My doctor suggested taking Benadryl for the itching (said
it would make me drowsy too) and if that didn't work she would
prescribe something stronger.
I have been doing research via the internet on RLS and
my symptoms seem very similar (although the itching seems less
common). Today I called called a research clinic that is doing a
clinical trial (Healthquest) for RLS and have an appointment in a week
to see one of their Drs give them more history, blood work and
physical. Is there any danger in possibly participating in a trial
(assuming I am a candidate) or should I cancel the appointment, and
try to get an appointment with a neurologist instead?
San Diego, CA
It does sound as if you have RLS and you
should get treatment as almost all patients can be successfully treated
with proper medication. There is nothing wrong with entering an RLS
trial and in fact I have run 2 RLS studies already in my office.
The only problem is that most studies have 2
groups; the one that gets the real drug and the other that gets the
placebo (sugar pills). The studies are run such that both the doctors
and the patients do not know who gets which pills (called a double blind
study). So, if you do not mind a 50% chance of ending up in the group
that gets the placebo, then the study would be a good choice.
Unfortunately, most neurologists do not have
much experience treating RLS. I suggest that you find a neurologist (or
better yet, a sleep specialist) who treats lots of RLS and are very
comfortable and knowledgeable in this field.
Sent: Sunday, April 27, 2003 8:22 AM
Subject: Clonazepam and side effects tapering of the drug?
I was diagnosed with PLMD in '96. I have been on
clonazepam since. Recently, I have been seeing a new
Dr who is an expert in the field of RLS and PLMS. He
said the he doubted I had PLMD and we agreed I should
taper off the meds I am on.
I was on 2mg of clonazepam
at bedtime and he said to reduce the dosage 1/4 mg per
week until I was down to 1/2 mg. I did so and after
being on 1/2mg for 2 weeks, he told me to go down to
1/4 for a week and then be completely off.
I did that and until I stopped all together, I felt
fine. As soon as I stopped completely, I have been
feeling very shaky, dizzy, and nauseous.
How long can
I expect these symptoms to last? I can't really
function very well.
It is likely that you are suffering from withdrawal from Klonopin
(clonazepam) even though you tapered quite slowly. The last dose of the
drug is the most difficult one to taper of off. It usually takes only a
week or two, but some may need 3-4 weeks to feel normal. If it takes
longer than that, then something else may be responsible for you
The only way to make sure that you do not have significant PLMD
affecting your sleep at this time would be a repeat sleep study.
Sent: Monday, April 28, 2003 7:36 AM
Subject: Mirapex problems?
I was diagnosed with PLMD/Restless Legs Syndrome 2 yrs ago. I sleep
3 hrs per night. The only meds I've taken for it so far are various
benzodiazepines. My doctor had prescribed Mirapex last year and I took it for 3
days but started to twitch during the day - which I never do, only at
so I stopped taking it.
My question is; when you start taking Mirapex
long should it take before it begins to work if it is going to? I am
desperate for sleep and am considering trying it again.
Mirapex will work immediately (within one to hours of taking it). You
may have started with too high a dose. I always start with the lowest
dose (.125 mg) which has the least chance of causing side effects. If
this dose does not help, then after each 3-5 days, you can increase it
by one tablet.
A Reply from Ariel
Sent: Monday, May 05, 2003 10:34 AM
Thank you so much for your quick response to my last question
I took .125 mg of Mirapex last night for my PLMD. It did not help at
it may have actually made my sleep even worse. It was almost as
though I felt very tired, I could not sleep.
I usually have no
falling asleep but wake up at least 40 times per night. I could not
asleep on the Mirapex. Should I continue taking it and does it need
to work or is one night enough? I now don't know what to do. I guess
will go back to the benzodiazepines, temazepam specifically. I do not
really like temazepam as I know they are addictive and cause severe daytime
don't know what to do. Any suggestions??
Thank you very much.
Some people get insomnia with Mirapex (the more common side effect,
strangely enough, is increased sleepiness which may limit its use in
the daytime). Sometimes, Requip may not cause this problem, so it is
probably worth a try.
If not, then the shorter acting benzodiazepines are best as they
should allow you to sleep but not cause daytime sleepiness. Ambien is
also a very good choice as it is not addictive and rarely causes
Sent: Monday, April 28, 2003 6:53 AM
Subject: PLMD and Klonopin?
I was diagnosed with PLMD last week (saw a
neurologist) and she prescribed clonazepam. In reading your
replies to the letters, should I be worried about taking this medication
- I understand that it is addictive and that's just one more thing I
don't really need at this point. Should I ask my doctor to
prescribe something like Zaleplon instead?
I went to the sleep institute on Friday and
although I don't have the official results, the tech said I have mild
sleep apnea. It isn't bad enough to have to use CPAP. Is there
foods I should avoid for the sleep apnea (and the snoring). I do
not drink coffee after 10 am.
I do not like using Klonopin (clonazepam) for almost any reason as it is
an addictive medication and causes daytime sleepiness due to its very
long half-life. There are however, other RLS specialists who use this
drug extensively, but I am clearly not one of them. Sonata (zaleplon)
or Ambien (zolpidem) are much better choices, although Sonata is very
short acting (half-life of 1 hour) so it may not control your PLMD
throughout the night.
The other concern is that benzodiazepine sedatives like Klonopin, may
worsen sleep apnea turning mild sleep apnea into a moderate or worse
problem. They are therefore not recommended for sleep apnea patients.
Food and caffeine does not affect sleep apnea, but alcohol makes snoring
and apnea worse.
Sent: Wednesday, April 17, 2002 11:51 PM
Subject: Best Antihistamine for RLS (?)
Thanks to your web-pages, so many of us are now aware that
worsen RLS. Are there some that work best in relation to not worsening
If so, can you give prescription types and over the counter types.
All of us fellow "NIGHTWALKERS"
you in advance.
Almost all the antihistamines are trouble for RLS sufferers. The 3
non-sedating antihistamines, Claritin (now non-prescription), Clarinex
and Allegra, have a reasonable chance (in my experience, about 50/50) of
being tolerated by RLS patients.
Sent: Sunday, May 04, 2003 6:30 PM
Subject: my restless leg & Ultram questions
I just happened on this website for
the first time. I am a 53 year old female who suffers horribly from
RLS. For the past 2 years I have been using Ultram. For the past year
I had increased to 4 pills a day to control it to the point I usually
did not have any symptoms.
However in that last year, I have also
experienced hair thinning to the point now where I fear if it
continues I will eventually have very little hair. My doctors have
checked my scalp, checked my thyroid and have concluded either it is
just naturally thinning or it may be the result of the Ultram. I am
trying to take less Ultram, 3 a day currently, because I tried to go
down to 1 or 2 just at bedtime and I was miserable and had very little
sleep for about a week. I'm just not sure what to do.
Hair loss is not even listed as one of the side effects of Ultram
(tramadol), so it is quite likely that this drug has nothing to do with
your problem (although, certainly less is a very miniscule possibility
that it could be causing this side effect as one can never be 100% sure
when it comes to drugs).
Ultram is a good RLS drug but it is much better to treat your RLS with
Mirapex or Requip and only use Ultram if necessary. Once you get up to
4 Ultram per day, there is a small possibility of addiction/tolerance
occurring so it would be nice to be able to decrease this drug by using
other ones that work differently. If Requip or Mirapex do not work for
you, then alternating Ultram and a narcotic (such as Vicodin) may be
Sent: Monday, May 05, 2003 10:25 AM
Subject: What about methadone for RLS?
I have tried many things for severe RLS; from relaxation techniques to
health food and herbs, electro-stimulation, massage, from
dopaminergic drugs as well as opiates (both legal and illegal). You name
I've tried it. The only thing I have ever gotten relief from (and I mean
ongoing with no rebound and no augmentation) is a low dose of methadone
the 25 to 35 mg range depending upon body size and tolerance.
me is the reluctance of people to use methadone even when they are
horribly from sleep derivation! Stigma? Fear of addiction? With medical
supervision and a little knowledge, methadone could and should help
countless sleepless people. You do not have to stand in line at a clinic
with addicts waiting to be dosed. Your doctor can give you a
take to Walgreens. I fear to imagine where I would be without it.
You are right about methadone being one of the best drugs available for
RLS, especially severe RLS. Most physicians are very concerned about
prescribing narcotics on a chronic basis, especially a potent one like
methadone. The other problem is that methadone requires a triplicate
DEA prescription in most states which makes most doctors feel like big
brother is watching what they do.
As I see many severe RLS patients, I prescribe methadone very often with
excellent results and no problems with side effects, addiction or
tolerance if used correctly.
Sent: Tuesday, May 06, 2003 10:04 AM
Sinemet 100/25 for the last month and was quite well rested. I had no
RLS while falling asleep but I was still jerking awake. I felt
relatively refreshed in the mornings and had a considerable, positive
change in mood and motivation.
to try Mirapex so I started last night with .125 mg (half a tab). It
was terrible. Couldn't fall asleep for about four hours and then when
I did I had crazy dreams and lots of twitching. My question
is...should I stick it out and see if I adjust or go right for the
Requip? Does anyone get over the insomnia?
your opinion, if Requip doesn't work, would I be better off going back
to Sinemet or moving on and trying something like Methadone?
again, this website has already helped me make a positive change in my
Sinemet is not a problem if you stay less than 3 of the 25/100 mg
tablets per day. If you start to have trouble (augmentation or rebound)
despite keeping the dose low, then a change would be in order.
Mirapex can cause insomnia, but it is hard to tell whether the low dose
that you took caused the problem or getting off of Sinemet suddenly and
not replacing it with a higher dose of Mirapex was the problem. Requip
would be worth trying if Mirapex does indeed cause insomnia. Methadone
is an alternative (more appropriate for severe RLS), but Neurontin is
also worth considering.
Sent: Wednesday, May 07, 2003 9:14 AM
Subject: RLS Question about Gabitril for RLS
In reading the letters, I see that Mirapex and
are the most frequently recommended medications. I recently saw a sleep
disorder specialist who suggested I stop Permax and start Gabitril. What
your experience with using Gabitril for RLS?
I have tried Gabitril for a small group of my RLS patients with very
limited success. I still suggest that Mirapex or Requip are much better
choices as we have a lot of experience with these drugs and they have
both a very good track record and support in the medical literature for
their benefits in RLS.
Thursday, May 08, 2003 3:17 AM
Subject: Pantyhose for RLS?
I stumbled across your site after reading an old copy of Prevention
magazine with a story on Restless Leg Syndrome.
I never knew what this was and never heard of it or PLMD before but I
have all those symptoms for years. I never knew what it was that caused
I've had the restless legs, crawling skins, electric shock-y feeling and
pain in my legs for over 25 years (I'm 41). When I was younger, my mom
and her sisters called it "jumpy legs" or "jimmy legs." It was more
annoying than anything else but as I've gotten older, the pain become
more intense and the need to keep them moving became worse. The
twitching or jumping in my legs was always written off as "muscle
spasms" with no other investigation.
10 years ago I got married and the nightly leg moving and arm twitching
was affecting my wife's sleep. 5 years ago, I decided to get help. I had
a number of check-ups and tests and my flat feet were diagnosed and
orthotics were made. After the break-in period, the pain in my legs did
seriously diminish but not the jumping, twitching and crawling skin.
Going back for further checks of the orthotics, my doctor mentioned that
a lot of her patients with leg pain and discomfort wear support hose
(pantyhose) and suggested I try them. I talked with my wife and she said
it couldn't hurt. So I did. After getting over my awkwardness, I found
they helped immensely.
On certain days when my legs are really bothering me, I'll even sleep in
them and it has really helped, especially in reducing the jumpiness of
my legs and that has really helped me stay asleep, and more importantly,
my wife. Its been four years now and I wear hose almost every day.
I have another symptom that happens during the leg events; the backs of
my arms, from elbow to the shoulder, burn or feel crawly too.
Has anyone else tried support hose/pantyhose? Has anyone else reported
these arm symptoms? How do I approach my doctor and ask him to look into
RLS and PLMD? Support pantyhose has helped but the pain is still there,
along with some nights (and days) when even they won't help the crawling
skin and burning sensations.
Other RLS sufferers have noted that using stockings or wrappings which
cause compression of the legs seem to help their RLS (usually only
moldy, but some can get considerable relief).
For RLS that is more of problem such as yours, Requip or Mirapex would
be the drugs of choice. If your doctor does not feel comfortable
prescribing these drugs, then ask for a referral to a sleep specialist
(or a neurologist if a sleep specialist is not available) who can help
There should be no problem approaching your doctor for help, just tell
him your symptoms and diagnosis and if he does not help you as above,
then you need a new doctor.
Sent: Wednesday, May 14, 2003 3:42 PM
Subject: Restless arms
HI there found your page and looking for some answers. I am
having troubles with my arms feeling restless with I try to go
to sleep. Its doesn't happen every time but when it does
I feel terrible.
Is restless arms as common as restless legs
Sometimes I do get just a little of the restless legs.
I am on Ultram for arthritis
pain. Could the restless arms be from my arthritis
? I am scared to mention this to my doctor as he will
think me crazy. I really need some help and not sure
where to turn. What type of doctor
would be the best to talks to about this problem ?
Thanks so much for any information,
Sheila, Knoxville, TN
Restless arms usually occur with restless legs and
most often indicate worsening of RLS. There is a smaller group of RLS
patients that have RLS mostly in their arms (as in your case) and this
can occur in the milder stages of RLS.
There is no association between RLS and arthritis.
You should have no fear to discuss anything with your doctor (or you
have the wrong doctor), let alone a legitimate condition like RLS which
causes so much distress. If your doctor will not take your condition
seriously and treat it or refer you to someone who can, then you need to
get another doctor.
Sleep specialists or neurologists are generally the
best doctors to treat RLS but any doctor who is willing to spend a
little time to learn about this disease can treat RLS.
Sent: Friday, May 16, 2003 7:18 PM
Subject: surgery and RLS
I'm considering going ahead with surgery to replace my hip. I'm 65 and
a severe case of RLS and am quite concerned about what this will be like.
regular doctor is going out of the country for 3 months. I've heard horror
stories about RLS patients after surgery.
How best can I prepare? Do I
to wait until he returns so he can help me manage medicine? I'm on
OxyContin, .375 mg Mirapex, .5 mg. Alprazolam, 5 mg. Ambien and not sleeping
through the night now.
There should be no problem in the immediate post-operative period as you
will get lots of narcotic pain medication (which is standard for any
patient). The problem usually occurs 3-5 days after surgery when your
orthopedist will want to reduce or eliminate your narcotic medication.
RLS tends to get worse after major orthopedic surgery due to the immobility
of the patient. The increased RLS can be managed by taking Mirapex
(perhaps at mildly increased doses) and adding narcotic medication as
needed. Your orthopedist has to educated as to your RLS needs and
there is no reason that your post operative time should not be an RLS
If he is not willing or able to treat your RLS (even
after your primary care doctor speaks to him about your RLS needs), then it
may be prudent to wait until your primary care doctor returns from vacation
(or find another orthopedist who will take care of your post operative RLS).
Sent: Saturday, May 17, 2003 8:39 AM
Subject: Progressing to intermediate now
I have had off and on RLS since childhood, then just a few
times a year or so. About five years ago it became more frequent and I
noticed it worsened when taking Tylenol PM (my old remedy). All the over
the counter stuff with a sleep aid so far seem to make it worse. I have
tried many of my own little remedies with nice but brief success.
Melatonin worked for about a month. Increased Calcium for about three months. Magnetic insoles inside a pair of large socks for about 3
months, and still seems to lessen it to some degree. Hot bath immediately before bed works if I can get to sleep
right away, but I also have insomnia and usually takes a while to go to
Anyway three weeks ago I noticed constant numbness in my
right foot and loss of some motion in that foot. It is not painful but
seems to tingle a lot and I have little small electric like tinges every
now and then in that area (not the RLS type these are more like little
shocks). Could this be related to the RLS or probably something entirely
I am seeing my doctor on this and a X-ray revealed low bone
density in my ankle and lower leg area (previous compound fracture there 20
years ago). He has put me on high calcium, magnesium and a multi
vitamin for it for now. I still have to have a bone density study done and
a neurological test done on my leg. Just wondering if anyone else had
similar experience with RLS or like I think its probably a unrelated
Also I have noticed a strange thing with my RLS, I never
seem to have it if I am away from home. Whenever I sleep in a strange bed
I am OK. I spent a month in Europe in many different Hotels and not once
in that month did I have RLS. Also mine usually never starts until I turn
the TV off and actually start to try and sleep. Been in bed a few hours
watching TV no problem as soon as I turn it off it starts in about 5
There must be something associated with different mind
activities and moods that affect this syndrome. Just wondering if anyone
else had similar experience. I will see doctor next week and ask him
about RLS, I have never mentioned it before as it was more intermittent.
Osteoporosis (low bone density) or previous leg fractures and RLS have
nothing to do with each other. It is well known that mental activity (such
as playing video games) can prevent RLS symptoms. It may be more difficult
to explain why your RLS was better in Europe, but changes in time zones,
climate, etc., can sometimes affect RLS (for better or for worse).
The painful symptoms that you are having may be a neuropathy that occurs in
a minority of RLS sufferers. It may respond to Neurontin, Mirapex or need
narcotic medication to get better.
Stay away from drugs like Tylenol PM that contains antihistamines that
A Reply from above
Sent: Sunday, May 18, 2003 11:56 AM
Subject: Thanks for response
I started back on Wellbutrin ten days ago. Two days ago I
began a multivitamin and a large dose of Calcium with Vitamin D at the
urging of my Dr. to address the bone density issue.
Yesterday I noticed the RLS feeling in my left arm. It is
the same type of strange sensation as my normal Leg RLS, but it is more
constant and does not make me have the same actual feeling of having to
move it. It does feel better if I move the arm. It is very annoying.
occasionally seems to also involve my neck and jaw area but that is more
sporadic and not patterned. The strange part to me is the fact that it
doesn't come and go like my normal leg RLS (in waves every few seconds),
it is also less intense.
Could this be something entirely different and have
anything to do with the medication and vitamins?
It is possible that Wellbutrin is bothering your RLS (although it seems to
be one of the better antidepressant drugs for most RLS patients), but you
would need to stop it for at least a week or two before you can be sure
that going off it is the reason that you are getting better. You would
thus loose the antidepressant effect which most often takes a few weeks to
It is also unlikely that your RLS has much to do with vitamins. Unless
you are on other medications that worsen RLS (see our list), that is
likely also not the problem.
Sent: Saturday, May 17, 2003 9:13 PM
Subject: Thanks for the advice. (see previous letter Friday, April
25, 2003 1:30 PM)
Thanks so much for your advice. Two weeks ago (after hearing from you)
made an appointment with a neurologist (sleep specialist) here in San Diego.
Bad news was he was booked until August/September for new patients . Good
news was he had a last minute cancellation and I was able to see him today.
He said the symptoms were classic and the familial connection supported the
diagnosis, he ordered blood tests for iron/ferritin, and started me on 15 mg
Restoril at bedtime and Tylenol #3 when the symptoms flare up (though
suggested not taking them too close together).
We will see what
happens....at least I have hope now. He indicated that I should take the
Restoril every night (since I never sleep through the night) and then in 2
months he will see me again (unless I have a problem earlier). Are there
any issues with taking it every night? I had read somewhere that it
shouldn't be taken for more than 2 weeks at a time?
There is some controversy about taking benzodiazepines (Restoril/temazepam
is in this class) on a daily basis for more than a few weeks as they can be
addictive in some individuals. Many patients can take them daily for years
without any tolerance or addiction but others do get into trouble. If a
daily sedative/hypnotic is need for sleep, I suggest Ambien, as it is not
addictive and tolerance rarely occurs.
In addition, I find that Mirapex or Requip take care of the evening RLS
problem very well and then bedtime sleeping pills are needed only
occasionally if at all. This is my preferred way to treat RLS that needs
Sent: Saturday, May 17, 2003 10:43 PM
Any new research?
I have a question for my favorite expert on
RLS/PLMD. Have they found any correlation between RLS and the
cerebellum? It's been over 6 months since I had a meningioma removed
from the lower right region of my cerebellum. It was against the sinus
but was totally excised.
I am a life-long sufferer but my symptoms
increased dramatically in the time frame that the tumor was believed to
have been growing. Words cannot describe how bad the RLS was! Now I am
still taking a small amount of Ultram since it hasn't totally gone away,
in fact, my RLS is more like it was when I was in my 30s; much more
manageable. The only difference in my life was the removal of the
I'm pretty sure you'll email me back and say there's no evidence
the cerebellum is involved, but I can't ignore what has happened to me.
Maybe my experience could help researchers in a new direction.
There is some evidence that the cerebellum may be involved in generating RLS
symptoms but there is also a lot of conflicting evidence that other areas of
the nervous system are more important. It is still quite difficult to
Sent: Sunday, May 18, 2003 7:13 AM
Subject: RLS constantly in feet
The most discomfort I feel is in my feet They are extremely
sensitive, but particularly to being confined in shoes. I can feel seams in my socks or
stockings and am constantly taking off my shoes to stretch my feet and
massage the pain.
The balls of my feet suffer the most. They burn and
feel swollen. It is very difficult to drive any distance. I start to have
numbness, so I do this without shoes on to keep better control. My feet
are never totally relieved with Sinemet 25/250 X6 tablets a day.
have difficulty with my eyes .Many times I feel my vision is blurred when
the meds start wearing off. They become very itchy. Recently I did a
survey for an RLS study at Hopkins.. I was invited
to partake in a six day study which included an MRI and sleep study. I
really felt this might give me some answers.
However, to participate I
must be drug free for the 5 days preceding the tests plus the six days
of the test. I really don't think I could tolerate
this cold turkey approach. I would probably end up on the Psych
So do you have any solutions to my problems?
I'm very frustrated...HELP!
Mary Ann 58/Teacher/Frederick MD
The major problem that I see with your RLS
treatment is that you are taking a high dose of Sinemet which causes RLS to
worsen. Discuss with your doctor about stopping Sinemet and replacing it
with Mirapex or Requip. That might solve a good part of your problem.
The pain that you have in your feet sound like
the neuropathy that some RLS patients experience. Neurontin or pain
medication often helps this (if not made better by the change to Mirapex or
Research is very important to help us find out
about RLS but it is extremely unlikely that entering the six day RLS study
will shed any light on your RLS problem. If you feel that you cannot
tolerate the drug washout period then you are clearly not a candidate for
Sent: Monday, May 19, 2003 5:35 PM
Subject: Sick of Drugs....
I am 39, And have narcolepsy,
continual RLS, and kidney problems. I take pills to wake up, pills
to Help my legs, Pills to help me sleep, and pills so I wont get depressed
from taking all these pills. From what I have read on all these subjects, they
seem to be related in some form. Most people have some kind of sleep or kidney
problems also, the kidney problems are probably from the pills, but the sleep
disorders do seem to be related to the RLS.
I have had all kinds of blood work, EEG, brain scans, EKG. Every thing comes back great ,"Which is wonderful"
Except of course that if someone could find the cause, then there would be a
greater chance of finding a cure. I think the guy that said vascular is on to
something so that is my next avenue. I read in an old medical book that is has
to do with the blood pooling up in your legs. I don't know!
I can tell you
that Lortab has been the best I have tried yet, and I have tried a lot. With
drugs like Xanax, I slept but the flipping and flopping still went on all
night, same thing with drugs like Permax and Klonopin which are all a
different class of drugs. By the way it started in my legs but 4 years ago I
started feeling it all over. Got to go.
Thanks for sharing your stores it
helps to know I am not alone.
Sounds like you are having a tough time of it. Your problems are not really
related other than they all make your life worse. I still favor Mirapex or
Requip which really helps RLS and you can still add smaller doses of Lortab if
We are still far from finding out the cause of RLS, let alone a cure.
Sent: Wednesday, May 21, 2003 10:44 AM
I have developed what I believe is RLS. My lower legs feel trembly and
weak almost all the time. I cannot sleep at night because my legs hurt and
jerk and move on their own. I was in a car accident 2 months, had broken
ribs, torn spleen and torn diaphragm. I was given Darvocet N-100 for pain.
Although the rib pain is no longer a problem, I've noticed that when I take
2 Darvocet tablets at night, I have less symptoms with my legs. I was also
prescribed Ambien for sleep which does not seem to help with my legs. It
just makes me very sleepy but I cannot sleep because of my legs. MISERY.
I'm on PremPro and Dyazide. Is the Ambien, Prempro or Dyazide causing the
problems with my legs? I have severely cut back on caffeine with no
results. I've tried warm baths. I've tried to relax. Nothing is helping
It does sound as if you have RLS. Nothing you are taking should be
affecting your RLS, so I would not worry about your current pills.
Narcotic pain pills (of which Darvocet is one of the weakest) are very
effective for treating RLS symptoms. A better choice for treatment is
Mirapex or Requip which should give you excellent relief.
Sent: Wednesday, May 21, 2003 1:36 PM
Subject: Restless Legs in Alabama
My name is Sallie and I live in central Alabama. I've been suffering
from RLS since about 1995. However, it took about a year before I was
properly diagnosed. My family doctor put me on Skelaxin and referred me
to a neurologist who found nothing wrong with me. As far as I know, I
do not have the jerky legs--at least no one has told me that. I have
the just deep pain in my calves.
Before I was diagnosed, I would get up
in the middle of the night and rub my legs down with whatever kind of
muscle rub I could find and wrap ace bandages around my calves.
Then one day I had to see my regular doctor's partner because he was on
vacation. She immediately diagnosed me with RLS and put me on
Klonopin. It was a miracle for me for years. As a matter of fact,
about a year ago I was able to start taking it on an as needed basis.
of a sudden, the RLS returned with a vengeance. Instead of one .5 mg, I
was having to take two. And sometimes I would have to add three
ibuprofen to the regimen.
I do know of some things that will "set off" (that's what I call it) my
RLS. I cannot take any kind of anti nausea medication (Phenergan
in particular); most antidepressants (although Celexa and Lexapro don't seem
to bother it); any over the counter antihistamines.
Antihistamine can set off RLS in a major way. I
work for a pharmacy company that services nursing homes and a pharmacist
helped me determine what all of these medications had in common that was
causing my legs to hurt so bad I wanted to chop them off. I'm sure
many of you have felt the same way.
Anyway, it was apparent that the Klonopin was no
longer working. I was recently changed to Neurontin. It's only
been two nights, but I have been better. The pharmacists I work with
had suggested this over most of the other medications used to treat RLS
because it has minimal side effects. I have been a little dizzy when I
wake up in the morning, but at least I'm not groggy all day.
I would like to know if there's any kind of foods,
drinks (e.g. caffeine), I should add to or delete from my diet that may help
me with RLS.
Antihistamines are one of the most potent drugs for worsening RLS. Caffeine
is the most common food substance to avoid. For other drugs and foods to
avoid, please see our
RLS Treatment Page.
Skelaxin has no role for treating RLS. Klonopin helps most RLS initially,
but tolerance and addiction occur very often. Neurontin is a reasonable drug
if you do not experience side effects (usually sleepiness during the
daytime). If the Neurontin does not help adequately, then consider Mirapex
or Requip, which help most RLS sufferers.
The information and advice on RLS given on this web
site is for educational purposes only. None of the advice, information or medical
treatments should be followed without the supervision of your medical provider. The
information presented on this site is not a substitute for your doctor, but should be used
to help you discuss your RLS problem with your doctor. Do not undertake RLS medication
treatment on your own! Please seek qualified professional medical care to help treat your
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,
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