Patient letters on RLS symptoms and remedies- Page 41
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Sent: Monday, April 22, 2002 11:30 AM
Subject: links between RLS and birth control pills
I have restless legs syndrome, and have noticed that it seems to be worst
during the middle of my cycle, but does not seem to be impacted by iron
supplements, and I had my Ferritin level tested; it was 75, normal. So I'm
wondering about other hormonal causes during the menstrual cycle.
anybody know if taking birth control pills can effect restless legs one way or
another? I'm still nursing my third child so I can't take Mirapex yet,
although I have a prescription, so I'm trying to get by for now.
The relationship of female hormones and RLS is a confusing
one. Some women get worsening of their RLS just before their menstrual
flow while others get it at different times in their cycles (such as you).
Many others (probably most) are not affected at all by their cycles.
Hormonal treatment (estrogen replacement therapy for
menopausal women or birth control pills for younger women) can also have quite
varied effects on RLS (from worse to better to no effects). As you can see,
there are more questions than answers at this point.
Tuesday, April 23, 2002 1:24 PM
Subject: Peanut butter & RLS
My son-in-law, a retired dentist, age 62 has a
light case of RLS. He has episodes every 2-3 weeks, and takes no
medications for it. When an episode occurs, he gets a heaping teaspoon
of peanut butter, and it goes away. No other medication (if you want to call
peanut butter a medication.
I have RLS nearly every night, and I regularly
take a teaspoon heaping with peanut butter, and it helps it go away, in
addition to my usual medications.
I hope this helps you in your research!
Your treatment is a new one for me! I will post this
on our website to see if others may benefit from this simple and relatively
Sent: Friday, April 26, 2002 12:15 PM
I have RLS/PLMD and in the beginning before they found out I had both of these,
the doctor did a MRI, spinal tap, sleep studies all kinds of test. But when they did the MRI they found white
lesions in my brain. We just had another one done and they found new ones.
They ruled out mini strokes or tumors, and I have no signs of MS. But that
is the only other reason they can think for them to be there. What I am
asking is there any reports of anyone having these in there brain and
growing with RLS/PLMD? There has to be a reason for them being there? Do you
have any ideas on this at all?
Thank you very much,
There is no known association with RLS/PLMD and any
abnormal MRI or CT scans of the brain. It is actually quite common to
see "white lesion" in the brain on MRI and the meaning or
relevance of this finding in not well understood (both in RLS and other
Sent: Sunday, April 28, 2002 9:33 AM
Subject: RLS better with Elavil
I've been suffering with RLS for many years and suffered extremely with migraines.
Years ago my family doctor prescribed amitriptyline for my
headaches but noticed that all my symptoms of RLS disappeared.
Now I take Zomig for the headaches and asked my doctor to wean me off
amitriptyline which he did. I had bad side affects with amitriptyline but then
two nights ago I started having the terrible RLS symptoms so what do you
Elavil (amitriptyline) is an antidepressant that most
often worsens RLS. There are some RLS sufferers, such as you, who
seem to improve with this drug. However, if you are having side
effects from Elavil, then you must stop it.
Your RLS can be easily taken care of with Mirapex or
Requip. Speak to your doctor about starting you on one of these
Sent: Monday, April 29, 2002 2:51 PM
Subject: Vitamin E
I would like to know what your opinion is on Vitamin E helping RLS. I
personally take Neurontin with good results but have a brother who refuses
to take any prescription meds and keeps telling me about how he takes
quinine and now is saying the "natural" vitamin E has helped him.
He wants me to take it too.
I will not go off my medication but have
decreased it some gradually and was hoping to stay on a low dosage and use
some of the other suggestions I have learned. Hope you can answer my
Julie S, age 58
There is no evidence that Vitamin E has any effect
or role in RLS. There are always anecdotal reports of all kinds of drugs
and a few patients will get relief, but whether this is a placebo effect or
real in impossible to discern. We do have a recent
letter from an RLS sufferer who benefited from Vitamin E.
Quinine, also rarely helps RLS, so I am not sure
what is really helping your brother. Quinine is a drug, no different or
safer than any other prescription drug.
Sent: Tuesday, April 30, 2002 8:25 AM
Subject: Worsening RLS on Mirapex?
I am a 49 yr. old woman. I have been
diagnosed with fibromyalgia about a year ago. I've had RLS for at
least 4 years. I hurt so bad I can't stand it. Right now I'm
sitting here typing this and rubbing my feet. My knees hurt, my ankles
hurt and my feet hurt and burn. Rubbing does help but I'm about ready
to go nuts because there is no time for relaxing. I can't quit my job.
So I grin and bear it.
My doctor just put me on Mirapex which is great
for at night but what helps the RLS during the day? My relaxation is
crocheting, quilting and reading. But right now I can't relax because
of the constant rubbing of my feet and legs. I get such a kick out of
people that say to walk all the time. When do you have time to relax.
That is very stressful in itself which I think leads to the RLS getting
Mirapex works well at night, but it can also work just as
well during the daytime (unless sedation occurs as a side effect, mostly with
higher doses). Speak to your doctor about using this drug during the
Sent: Thursday, May 02, 2002 12:45 PM
Subject: RLS and PLMS
You gave me some very helpful advice when I wrote in
November 2000, and now I'm back again. I raised my nightly dose of
Mirapex to 1 1/2 of the .125 tablets in February 2001, I think. At first
it worked like a dream, but soon I was often having to use various
strategies--such as turning the light on again almost immediately, having a
bowl of cereal , doing some reading etc, to get my legs to calm down again.
In the last couple of weeks, these strategies haven't worked. I could
get my legs to stop jerking by going to the computer etc but they would start
up again almost immediately I got back into bed and I found that I was often
having to take Xanax ( usually 1 /2 of .25 would do it) or one of my husband's
Ambien in order to sleep..
I took an extra 1/2 Mirapex in the night on
one occasion, and 2 from the start on another but that didn't do anything.
So I decided that I would have to try what raising the dose a bit more would
do. As it happens, the last 2 nights, when I have been taking 2 of the
.125, they have worked very well (though I don't feel all that great
the following day). My questions are:
If I have to raise the dose more and more, are doses of .375 or
even .625 still considered low or perhaps medium doses? When does
one start to get into the high range? I assume that I shall have to
increase the dose periodically, whether because my condition is getting worse
with age or because I'm in the 5% who have augmentation with this
How long has pramipexole been in use? The drug book
"Worst Pills, Best Pills" advises strongly against taking
drugs that haven't been in general use for at least 5 years. Of course,
I wouldn't give it up, but I'm curious.
I shall be having a cataract operation sometime fairly soon (I hope!) and
I'm quite anxious about the possible effect of the anesthetic. Is there
anything I should ask the doctor/tell the doctor. Supposing my legs jerk
at some crucial moment?
A couple of years(?) ago I noticed an intermittent tingling feeling in my
feet. This has now become, I think, continuous, goes up my lower legs
and is the same for my hands. Is this what other people with RLS
experience? It resembles a mild form of pins and needles. Also,
although I am still capable of walking reasonably briskly, my legs feel
heavy and somewhat aching when I walk (we have a large dog). Do
other people have the same experience? I've had somewhat similar
episodes of this heaviness in the past, so perhaps it is temporary.
And finally: My legs occasionally feel weak and trembly; this
usually goes off after a fairly short while, but it's an unpleasant feeling.
When I asked a neurologist I was seeing about headaches about this several
years ago, he said it was connected to the leg problem I have at night.
Have you heard of other people with RLS having the same experience?
I shall be seeing my doctor soon, because I want to let her know that I
shall be increasing the dose of Mirapex. But she is not
knowledgeable about this particular problem or the medications for it.
Thank you very much for anything you can tell me
P.S. When I had bronchitis a couple of months ago, I had a low fever
for about 5 days, and my legs were absolutely calm the whole time. It
was amazing. As soon as I got better, they started up again. I thought
that it was bizarre, to say the least. But I was certainly grateful.
Mirapex has been on the market here in the USA for about 5
years so it just about makes it off the list of "worst drugs".
The average dose of Mirapex for RLS patients is between 2-6 of the .125 mg
tablets (.25 - .75 mg) per day. I have had patients who have taken up to
3-4 mg per day, but that is for the very severe patients (that I often see in
my consultative practice). I generally recommend that my patients increase
their dose of Mirapex by 1/2 to one tablet (of the .125 mg) every week until
they get control of their RLS symptoms.
Before surgery, it may be helpful to take a few extra
tablets of Mirapex to prevent the RLS. If that is not possible, then a
pill or intramuscular shot of a narcotic (such as Demerol) would likely do the
The pins and needles (called parethesia) are present in a
minority of RLS sufferers (10-30%????). This is a neuropathy that seems
to be associated with RLS but is not understood at all (as to why it occurs or
what to do to treat it).
Headaches are not a part of RLS. If you get poor
sleep from the associated PLMD (in which case you should be somewhat drowsy
and fatigued during the daytime), then possibly this could help promote
headaches. Otherwise there should be no relationship between headaches
Your observation of fever relieving RLS is a very common
one. The reason for this is also unknown (as is most of the RLS
Sent: Thursday, May 02, 2002 1:22 PM
39 years old. I used to suffer periodic bouts of RLS (once or twice a year).
On a scale of 1-10 (with 10 being intolerable), I would rate them a 5
or 6. There is a history of RLS in my family (generally females), and I
seemed to suffer from it the least, by far.
I have been plagued with migraine headaches, which would sometimes occur
as many as 3 or 4 times a week. The primary trigger for my migraines was
nearly always visual (bright light, like sun flashing off someone's chrome
bumper). I also suffer with an undiagnosed sleep disorder (although the
RLS may play a part in that).
ago, I was involved in a horrific auto accident which nearly killed me.
My physician was trying to treat my sleep disorder with a combination of
different drugs (the primary contributor being Neurontin), and I fell asleep
at the wheel on my way home from work. Fortunately I did not hit anyone
else, but an overpass abutment. I broke one leg, both arms, my shoulder and
neck. I have since recovered nearly completely. I refused to continue the
drug "cocktails" for my sleep disorder.
I no longer suffer from migraines.
narcotic treatment for my accident recovery went from Morphine to OxyContin to Percocet to Lortab (over a period of three months). It was when I
tried to discontinue the Lortab (at my surgeon's recommendation) that I
noticed the RLS has returned with a vengeance ó every night, worse
than ever. I would rate the intensity as 8-9. Sleep is impossible. When
sufferers describe feeling "frantic" to make the symptoms
stop, I can only heartily agree.
As long as
I take one Lortab (7.5mg) at bedtime, the symptoms do not occur
(although I still suffer from poor quality of sleep, which is typical for
orthopedic surgeon requested I try other drugs (Tylenol PM, Exedrin PM,
etc) but I have yet to find an over-the-counter drug that relieves the
effort to treat the RLS (and get me off Lortab), my primary care physician
has prescribed Mirapex (which made me so ill I thought I was suffering from
the 24-hour flu), Permax (which kept me awake, I would sometimes go 2-3
days without sleep), and then Requip. This was tried over a period of 2.5
months and none of the three provided relief from RLS.
also had a blood-screen done and my iron was absolutely, perfectly normal
(as was all the other blood work).
I have an
appointment Friday May 3 to see a pulmonologist who specializes in sleep
disorders, but would appreciate any other recommendations.
Since you have tried almost all of the Parkinson's disease
medications, it seems almost futile to try these again. We strongly advise our
patients against taking over-the-counter medications like Tylenol PM as they
usually contain antihistamine related drugs which will most often markedly
I have many patients who do not tolerate or get benefit
from the Parkinson's disease class of drugs and will usually put these
patients on a narcotic at bedtime (such as you are doing). Since only
the narcotic is helping (the acetaminophen part of Lortab does not help RLS),
I try to avoid using combination drugs that contain Tylenol. Despite its
stigma, methadone is a very good RLS drug which is a pure narcotic.
If taken once a day, it is very rare (at least in my large
practice where I have to see it) to get problems with addiction/tolerance to
Sent: Friday, May 03, 2002 3:20 PM
Praise God, I have found a solution for this horrible malady, at least it works
for me. I suffered through quinine pills to no avail and then, while surfing H S
N , I heard Andrew Lessman selling his Circulation and Vein support.
I sent for a month supply and noticed that by two weeks the
jerking had virtually stopped. That was a year ago and I had still a little
break-through now and
then , of RLS.
Recently my doctor insisted that I walk for my blood pressure and weight. I
began to walk about 15 min. each morning and in a few days , no more R L S
at all !!! I stopped all meds and still no RLS.
Needless to say, I'm elated and I wanted to share this , hoping it will help
someone. What a blessing to sleep all night or sit through a concert
without squirming and jiggling my legs !!
Thank God !!
Sent: Monday, May 06, 2002 9:45 AM
I've been taking Mirapex for restless legs and it has been wonderful in
eliminating that problem. I'm the one who at first was taking Sinemet
the restless legs until rebound and augmentation set in. I was greatly
over-prescribed on the Sinemet and though I haven't taken this drug for a
couple years now, its rebound and augmentation effects seem to have never
I have found, on your recommendation, that Ultram has relieved
those "Sinemet legs" very well. However, my neurologist,
doesn't seem to
like Ultram too well and has a few other drugs he would like me to try
The first was Neurontin, which turned me into a zombie. I
dare drive a car in that state. My husband found me at the computer the
first day I was on the Neurontin and he said I had picked up the computer
mouse and was running it over the computer screen trying to control the
cursor! I have absolutely no memory of that having happened, and it was a
Anyway, the neurologist had me stop taking the Neurontin and now has
prescribed Topamax for pain relief, while keeping me on Mirapex for my
restless legs. I didn't find Topamax on your list of drugs and
much like your opinion of taking Topamax instead of Ultram for pain relief.
Although neurologists (and some sleep/RLS specialists) like
medications that are not pain killers, but modulate pain (such as Neurontin),
I am not a big fan of these drugs. I do use them at times (successfully), but
only in a small percentage of patients. The side effects seem to be
worse than the symptoms that I am trying to treat.
The question of Topamax seems to come up every few months.
It is an anti-seizure medication (like Neurontin) and although there is no
literature showing that it has ever helped any RLS patient, neurologists keep
wanting to try it for RLS. I have no experience with this drug (compared
to the vast experience of some neurologists) and cannot add anything further
to its use in RLS.
When my patients are doing well on low doses of Ultram, I
tend to leave them on the medication indefinitely (and thus leave well enough
Monday, May 06, 2002 3:13 PM
Do I have RLS?
I'm 46 years old and for the past year I've
began to have symptoms of RLS.
after about three months of horrible symptoms in
my legs, which involved a tightness, a deep bone pain in
pain in my ankles, and restless nights
from 10:00 to about 3:00.
I saw a doctor who thought I may
so the treatment began after a sleep study
confirmed moderate periodic leg movement. My symptoms don't seem moderate at all
I'm on two .5 mg Mirapex at night and often I also take Klonopin to help me catch
up on my sleep ( .5 mg). The reason I'm writing is that I also feel this
constant tightness in my shoulders during the day. All of a sudden I'll notice my
whole upper body is in some sort of clenched position which I consciously have to
I used to take the Mirapex during the day also
but had too much fatigue but these shoulder pains and tightness was on
then also. I'm wondering is this RLS? Am I on the right dose? On the right drug?
I hope you can help
It does not sound like the shoulder pains are RLS unless
they meet the criteria:
1) Strange feelings (may be described as creepy-crawly,
but sometimes can be actually painful) in the legs/arms which occur mostly
2) The unpleasant sensations are strongly associated with
an almost irresistible urge to move the affected limb, and the movement
provides temporary relief (generally, only while the movement is occurring).
3) The unpleasant sensations occur most severely in the
evening and nighttime.
The dose of Mirapex (which is usually one of the best
drugs for RLS/PLMD) is quite variable, but you are on a rather high dose as
most need between .25 to .75 mg per day (often in divided doses). Beware that Klonopin can often cause daytime sleepiness as it has a long
Sent: Wednesday, May 08, 2002 4:26 PM
Subject: restless legs
I've been reading about restless legs and wonder if that is what I experience
many nights. I don't know that my legs actually move but it does feel twitchy
or somehow like it tickles under the skin. I used to associate it with taking
over the counter sleep medications and stopped using them.
They would cause
this tickle sensation in my legs as well as my arms. I associated it with my
joints-like a feeling of weakness. But now, even without taking anything
mostly my calves get this feeling. It makes me want to tighten the muscles
and flex. I thought it was some sort of stress build up so I massaged my legs
a bit. that seemed to help some.
I have always been tired. Always. I have very little energy. Regular exercise
doesn't help. I am overweight. Always have been to some degree. Don't know if
this is related. I only started noticing the leg twitches the past few months
or maybe the past year or so.
It does sound as if you have RLS.
The criteria for diagnosing RLS are as follows:
1) Strange feelings (may be described as creepy-crawly, but sometimes can
be actually painful) in the legs/arms which occur mostly at rest.
2) The unpleasant sensations are strongly associated with an almost
irresistible urge to move the affected limb, and the movement provides
temporary relief (generally, only while the movement is occurring).
3) The unpleasant sensations occur most severely in the evening and
You do not have to have any leg jerks to have RLS. If you have the
above symptoms, then you most likely have RLS.
OTC medications such as antihistamines will usually worsen RLS, which may
explain your problems in the past. If the RLS is bothering your
sleep, you may want to ask your doctor about prescribing Mirapex or Requip
for your problem.
Sent: Thursday, May 09, 2002 9:59 AM
Subject: Restless legs - "twittery legs"
It was with great relief that I found
this website. I came across it when searching for information on
taking magnesium in relation to leg movements at night. For years
prior to this I would suffer from what my Nana would describe as "twittery
legs". She would always complain of it late at night when she had
been sitting for a long time. As a little girl I was always a restless
sleeper and forever turning over and over through the night. In my
early twenties this gradually started to worsen and I found myself
complaining of "twittery legs" more and more often. I
would find it so hard to get out of bed in the mornings, always saying
"I feel like I only just fell asleep" I was
always so tired in the day. It was the feeling just as my
Nana described, an ache in the legs, like someone pulling at my veins from
the top of my leg - on the inside! To relieve this feeling I had to
move them, so I was tossing and turning all through the night and getting no
sleep at all. To not move my legs when this feeling began was agony.
This sensation would come in both legs (although lately it
just seems to come in one.) It would also happen, not only as I
was going to sleep, but in movies theatres and on planes.
Now as I have reached my late twenties the
problem has become one that affects me much more severely. It was
during one of my 'attacks', when I had it for about 3 weeks every night as
soon as I got into bed and tried to sleep, that someone said magnesium was
good for leg cramping. During my Internet search, when I discovered a
link between a magnesium site and a restless leg site, and learnt that
what I was experiencing had a name, I was so thankful. Finally my
partner and I could do some research and find out that others, apart from my
Nan and I, had the same symptoms. More importantly to read of the
different medications available was so heartening. Now I had an idea
of what it was and it's name, I went to doctor after doctor to find some
help. Some had never heard of it and just dismissed me with sleeping
tablets and one actually just gave me a form to fill in on dealing with
stress and depression! I couldn't believe how many doctors knew so
little of this problem.
Finally one doctor gave me Permax to try.
These were of no help during this attack period, and left me feeling very
dizzy and nauseous in the mornings. Then I was eventually
referred to a neurologist who really understood and fully explained the
condition and it's link with dopamine in the brain. Hooray!!
He started me immediately on 0.5mg of Cabaser
which did work at first and for about 8 months. (I don't believe this
is available in the US) I went back to having a good period where
the symptoms would come but only every 5 or 6 nights. I increased the
dose to 1mg. The symptoms even stopped all together for a while and I
thought this drug was the answer. When the symptoms would
return, I just increased the dose. I was allowed to go up to 6mg max.
I am currently going through another attack. The Cabaser no longer
works to alleviate the symptoms (have I built up a resistance?) I
have just started with Sinemet CR 50-200 strength. After 3 nights of tossing,
turning and pacing the floor until 5.30 am it has yet to work.
I have tried a lot of what is mentioned on these
pages, tonic water for quinine, hot baths before bed and then during the
night, walking on a treadmill in the night, sleeping with my legs raised,
cutting caffeine completely....unfortunately without having success with
any. I now just get up, walk around, and keep busy trying to create a
diversion, this is a great help during the night waiting for the lovely time
around 5.30 am when I feel the sensation in my legs start to cease and I go
into the deepest of sleeps. From this time on I can always get sleep,
I have no symptoms at all after this time. This still baffles my
boyfriend and I, why can I sleep after 5.30 am without any symptoms?
My neurologist and I will keep trying different medications. He says
it is one of the most under diagnosed conditions he knows of. He
says that the Cabaser has had the best results on his other
patients, most elderly.
At this time I am so grateful for this site
and all the letters that have given me so many different ideas to try
and a knowledge that others are sharing this experience. It is
odd to think that this brings so much comfort but it does.
Sally T., age 28,
Perth, Western Australia
Cabaser (cabergoline) is available in the USA under the
name Dostinex. It is not used here as it is very expensive. It is
used a lot in England and other countries.
It may be difficult to figure out why you cannot sleep
later than 5:30 am even when the RLS is not bothering you. Some people's
biological clocks just go off early in the morning for no good reason.
Other drugs to try are Mirapex or Requip. Using
higher doses of Sinemet (more than one 50/200 tablet per day) is fraught with
danger of rebound and augmentation of RLS symptoms.
Other choices to treat RLS include the narcotics and
Sent: Saturday, May 11, 2002 2:19 AM
Subject: RLS and Acupuncture
I am quickly falling into the desperate category with my RLS. Lack of
sleep is ruining my life and medication (Sinemet CR) helps
My question is acupuncture, has it been tried? I have heard it works
for other muscle related problems. Why not RLS?
Acupuncture has been tried for RLS with variable and
usually very limited success. There is no reason not to try it as this is a
treatment modality that generally causes no adverse problems (except for the
cost), but the chances of improvement is small.
Part of your problem may stem from the use of Sinemet CR.
If you are taking more than 50/200 mg per day, then you may be worsening the
RLS from augmentation or rebound. I find that my patients do much
better when changing to Mirapex or Requip (with or without the addition of
some ancillary RLS medications, such as bedtime sedatives or pain pills).
Sent: Sunday, May 12, 2002 4:59 PM
Subject: Going crazy
I have had it severely now for 30 years. Runs in my
family. Saw my mother utterly destroyed by it in the end, mentally.
I have had to undergo rehab twice from a
multitude of benzodiazepines taken over this time.
One drug did cure it permanently,
Problem was in the end I was taking 5 mg a night, but it worked.
Am now off meds but I am desperate. I average
2 hours a night and the mental nightly battle is being lost and I feel close to
some kind of breakdown.
I am not sure what to do anymore.
So far you have only been treated with benzodiazepines
(Rohypnol, which is not available here in the USA, is also a benzodiazepine).
Medications such as Mirapex or Requip take care of the RLS problems much
better without concerns of addiction/tolerance. This should take care of your
If not, you can add small doses of pain killers (which includes
the narcotics or the non-narcotic, tramadol).
Sent: Saturday, March 09, 2002 3:49 PM
Subject: RLS Sufferer ALSO!
I have had RLS since birth, or at least so my
mother tells me. She says that when I was infant, I was constantly
drawing my legs up to my chest in sleep, and when I got older, I began
kicking and twitching at night. I was also a colicky baby, and was
wondering if there have been any studies done to see if colic relates to
neurological problems? At this time, I have been diagnosed with both
RLS and Essential Tremor, by a neurologist.
You can't imagine the relief I felt when I
finally found a doctor who would listen to me and refer me to a neurologist,
who promptly put me on Klonopin for the RLS and Inderal for the ET.
The Klonopin was working wonders at 1.5 mg, other than the fact that I could
not wake up in the morning, and it often worsened the ET. The Inderal
is not really working for the ET, and in fact has worsened the RLS.
Now, I have a huge problem...recently, my gums began bleeding when brushing
my teeth, cuts would not clot, and I had a menstrual cycle that went on for
three weeks, where my normal is three days. I called my neurologist,
who told me to go to my primary doctor STAT, went there, and lost my
Klonopin. Apparently, Klonopin can cause thinning of the blood and
this is what had happened to me.
They were ready to send me out of there with
NOTHING, until I raised the roof and insisted that the doctor prescribe
something for me, as I am working full time and trying to go to school also,
and without medical help, I do not sleep, period. He has prescribed Lorazepam, which I am having to take 2 mg of to get ANY kind of relief, and
I have noticed that since I have been off the Klonopin, the symptoms of RLS
have gotten progressively worse.
My neurologist was nice enough to tell me that I
am one of the worst cases of RLS that he has EVER seen, and he has been in
practice for over thirty years. But everyone wants to start me at the
most conservative medication available, and the one that was working made me
"bleed out". You would not believe the bruises all over my
body right now! Anyway, I have symptoms of RLS 24 hours a day, all
over my body, to include the tingling, itching, muscle twitches (which are
visible to the naked eye), irresistible urge to walk or pull my legs to my
chest, and so on and so on...it's driving me insane, and I can't take the
Klonopin, and the Lorazepam is NOT relieving the symptoms, only making me
fall into a drugged sleep eventually.
I have an incredible resistance to almost all
kinds of medication due to heavy amounts when I was a child. Any
recommendations as to what I can say to my primary physician this Wednesday,
because he seems determined to take over my case from the neurologist, and
it is obvious to me from our conversation last week that he has next to no
knowledge of my condition, or what drugs to prescribe? The only reason
he even gave me the Lorazepam was because, like I said, I raised the roof,
and he felt safe doing it because it is in the same class of drugs as
Klonopin and therefore should work...guaranteed, it is NOT!
Klonopin is one of my least favorite drug as it almost
always causes daytime sedation and has a strong potential for
addiction/tolerance. Ativan (lorazepam) is in the same class
(benzodiazepines) as Klonopin. It has a similar side effect profile but
has a shorter half-life than Klonopin, but can still result in daytime
Mirapex or Requip are the drugs that have the best chance
of relieving your RLS symptoms and hopefully will not cause any side effects.
Most generalists have little or no experience with these drugs and may be very
reluctant to prescribe them.
Sent: Tuesday, May 14, 2002 9:44 AM
Subject: Neurontin/Ultram not helping RLS
I was diagnosed a with RLS a while ago and have tried various medications. For many months I was fine with Neurontin (900
MG/Day) and Ultram (50 MG) at
The symptoms seem to be getting worse lately. During the day I can feel
tingling in my leg and muscle twitching. At night, I am having more
problems sleeping. Sometimes falling asleep initially, but more often,
waking up many times during the night. I am waking up tired again each
morning. We have tried adding an additional 300 MG of Neurontin at night
then added an additional 50 MG of Ultram at night.
It is working a little better, but I am still waking during the night and
feel tired in the morning.
Could I be building a tolerance to the drugs? Would it be worth
with a different medication before these stop working all together?
Tolerance to Neurontin is not well described. It is more
likely that your RLS is getting worse. Mirapex or Requip are the next
drugs to considering adding to or replacing Neurontin.
Wednesday, May 15, 2002 5:21 PM
Subject: My solution.
I have had RLS for a while
now and my mother said that my Dad had it too. To make this short, my symptoms
are exactly as everyone has described. The sensation in the legs, usually my
right more then the left, and then the jumping every 30 seconds or so.
My cousin's wife was describing to my Mother that her daughter gets the leg
craps at night and she gives her AtoB Calm. I had never heard of this
product at the time, but my mother thought I should try it. I searched the
Internet and found the exact product called AtoB Calm. It is a Freeze Dried
Instant Calcium Magnesium Drink. Completely Natural/Sodium Free.
described on the box. You dissolve 1 tsp. in 1/2 cup of boiling water. I
then add a decaffeinated teabag for flavor and sip it each night before bed. As
long as I drink this each night, I do not have the restless night that I have
had. If I stop drinking it after a few nights it comes back. I'm sold on this
product and would recommend it to anyone suffering from RLS.
It is also an
excellent way for women to get their Calcium if used two or three times a day.
I'm sure there are several online companies that sell this product. I found it
at www.vitaminlife.com for $27.00 for 16 oz. container. Worth every penny.
I hope this will help others.
Sent: Saturday, May 18, 2002 11:13 AM
Subject: Prednisone improves RLS?
I have written before, but a short intro: I am a 67 year old female
and have had RLS since at least puberty. I have tried several
medications, and am now on Requip, which does help considerably,
although there are times when I still can't get to sleep until after
midnight. My current dosage is .50 mg twice a day, one dose at around
5:00 P.M. and the second before bedtime.
The reason for this inquiry is that I got in some poison ivy and was
prescribed prednisone: 3 tablets first thing in the morning for 10
days. However, they made me so 'hyper' that after a week I cut back to
2 and then one. The strange thing was that during the time I
took them my legs bothered me hardly at all! I would even forget to
take the 5:00 tablet sometimes.
Now that may all be a fluke, since the severity does seem to run in cycles,
but that is a long time for them not to bother me, regardless. I
mostly just wanted to share that and let you know in case, for some reason,
it did merit attention.
Thank you so much for this site.
I have many RLS patients who have asthma and get courses of
prednisone from time to time. I have not had any of my RLS patients note
this relationship of prednisone helping the RLS nor have I read this in the
We will see if any of our readers have noted improvement of
RLS with prednisone.
Sent: Sunday, May 19, 2002 6:34 PM
Subject: MY REMEDIES
am a 35 yr old male from Redlands, California. I have known for almost 7 yrs that I had
Restless Legs Syndrome. I was
just like all the others. I did not know if my legs were coming or going. I
just knew I had to move them. Sometimes they moved themselves.
I often drink a case of coke a day. One day I just quit
drinking coke and would only
have drinks with no caffeine. The doctor who diagnosed me put me on Carbidopa. That lasted a week. I could not work the next day after I had
taken the medication. So I stopped. After I quit with the caffeine my nights
of no sleep ended. Though I jerked a little at night, nothing like I did
while on soda. I was able to get a nights sleep with ease.
Then on March 8th
I was hit head on while traveling on the Ortega highway. All three bones (femur, tibia, and fibula ) all were compound fractures and comminuted. Ever
since I got home I have not slept well at all. When I jerk now I jerk. I
wake up screaming because of the leg fractures. I went to a check up Friday
and told the doctor that I had restless legs.
He turned to my wife and asked if I
had sleep apnea. She said yes. He then explained that the apnea has a lot
to do with the inflammation in my leg or legs. He said that every time I
stop breathing the O2 levels falls and any white cell that are helping me
heal end up being inflamed. So over night all the times I stop breathing my
white cells are attacked. So they are monitoring my O2 saturation tonight
and they are going to research the results then help me with not only my
healing but my restless legs to boot.
So if I learn anything I will keep you
updated as to what I hear. I really like the fact I can come to your web
and its local. Right now I am mailing what I find on the internet to family
and friends as to what I find on RLS. Thanks for your support.
Caffeine does worsen RLS in most cases and staying away
from it is a very good idea. Trauma is also commonly worsens RLS as in
Sleep apnea does cause low oxygen levels, but there is no
known relationship between this disorder and healing fractures, white blood
cells or inflammation.
Mirapex or Requip should take care of your jumpy leg
Sent: Tuesday, May 21, 2002 10:28 AM
Subject: Natural Remedies
I have restless leg syndrome which I believe started when I was young and
has been getting worse every year, and lately every month. I was being
kept awake at night by "creepy crawlies" and intense pain in
my ankles and knees. When I did sleep, I would awaken innumerable
times throughout the night. I always felt tired, lazy, and often
emotional. I have found several things that are working for me:
1. Liquid Needle ReBalancer EX Drops. At first I would try to go
to sleep on my own, wake up many times each night in pain, then finally take
the drops (3 - 5 under the tongue). I would also apply a drop to my
knees and ankles to relieve the pain there. The rest of the night I
would sleep uneventfullly. Finally, I figured out that if I take 3 - 5
drops under my tongue before going to bed, I sleep all night with no problem
and never have to apply any to my knees and ankles because I do not reach
the pain stage any more. After several nights of this, I am finally
having energy and less pain during the day so I am more able to do routine
things. (If you get the drops, keep them away from electrical
appliances such as computers, microwave, dishwasher, radio, TV, electrical
outlets, etc.) Call 1-800-886-6222 to order some. (I have no
affiliation with this company. A friend let me borrow her drops to
help out with some back pain I was having.)
2. I believe that my Restless Leg Syndrome is caused by toxic buildup
in my leg muscles. I also believe that a build up of toxins has kept
me from absorbing nutrients, such as Magnesium and iron. Right now I
am using herbs to detoxify my body. Contact me in a few months to see
how that is going. To learn more about detoxification and medicinal
remedies, see www.warnernaturalherbs.com
phone: 1-800-998-2131. Located in Crossville, TN. I have
seen Mr. Warner speak at a seminar and he is very interesting. He
grows his own herbs and does not use fertilizers or pesticides.
3. I do not eat within about 3 hours of going to bed. I noticed
before I began using the ReBalancer drops and detoxing that my worst nights
were when I had gone out to eat in the evenings. My son, whom I
believe has RLS, also has horrible nights of screaming and throwing himself
around in his sleep when we go out to eat in the evening. (We will
begin detoxifying him this week.)
4. Exercise helps me with my daytime symptoms. One person said
racquetball helped him the most, because of the fast, quick jerks and hops.
I do not have access to a court, so I hop, dance and play around with
Sent: Tuesday, May 21, 2002 4:49 PM
Subject: There is a god.....
I have suffered from this since I was a small child. I told my mother that
legs felt like running at night and it was very frustrating, because I
to sleep. Of course she chalk it up by telling me it was just growing pains.
Well, I just turned 39 years old last week and I believe the growing has
stopped many years ago.
I cannot pin point my episodes. They just happen. I
can tell you that during pregnancy I was a mess. And I noticed like one to
two days before my period actually starts I get it. Or when IM real stressed
out. It can happen once a month or three times that week. 99% of the time it
is at night. But sometimes just laying down watching a movie or at a movie
theater. Or long driving spells trigger it.
I have always treated it with
Tylenol, Morton, stretching my legs, or heating pad. Sometimes all of them
one night. Then I'm so tired in the morning. I always wondered what caused
this. I was talking to my mother today and she was telling me how the doctor
gave her medicine for her leg cramps. I told her I don't get leg cramps, I
get a felling from the waste down like my legs want to run and run when my
body from the waste up wants to sleep.
I have spent many nights just crying
in frustration. My Mom said this is called restless leg syndrome. Check the
Internet and see if this is you. Thank God I'm not nuts.
It does sound as if you have RLS. It is easily
treated (by doctors who are familiar with the treatment and the disease)
by Mirapex or Requip which should help you sleep normally and not be
bothered by your RLS symptoms.
Sent: Friday, May 24, 2002 8:03 PM
Subject: Thank you for the website.
Like so many others, I have suffered from this for years. I can
remember as a child, terrible leg aches, and when my grandmother would
come to visit, complaining of my kicking her all night, though I didn't
remember doing it. I also remember my father having the same
problem at nights for years.
I am now 65, a retired
nurse, and over the years tried almost everything that would provide
relief. Nothing seemed to make a difference.
Last month, I had to
have a two-vessel bypass, and while in the hospital trying to recuperate,
the restless leg syndrome completely interfered with my being able to
get enough rest.
After getting home, in desperation I went to my G.P., explained my
problem and he wrote me a prescription for Baclofen. I called
him back this morning and told him he had given my life back to me.
After I had read a few of the letters, I noticed that it is seldom
mentioned as a remedy, and after having such great results from it,
I was wondering why. Unless you have experienced this malady
for so long, and suddenly gotten relief from it, you wouldn't understand
how totally grateful I feel. My only regret is not looking for
help earlier, and having waited so long. My long suffering husband
is now also able to get a good nights rest.
Thank you so much for the website, and helping us to realize how many of
us are out there. This is a great support group..
Baclofen is a muscle relaxant that has been tried for
RLS, but usually helps only a small percentage of RLS sufferers and when it
does help, most only notice mild improvement.
Your case is unusual in that you have responded so well
to Baclofen. This drug is worth trying when the more common RLS drugs
are not helping.
Sent: Monday, May 27, 2002 12:38 PM
Subject: Restless Legs Syndrome
I write this, I am struggling not to jump up and shake my legs. I have
not slept more than an hour a day for the past week. Needless to say,
Iím exhausted. Two nights ago I resorted to a prescription for Trazadone,
taking the prescribed initial Ĺ dose, a few hours later I took the
other half. It did nothing except make me perhaps a little more
woozy than I was already feeling. Last night my spasms were
particularly severe so I took a whole dose with no results so a few
hours later I took another. It could be my imagination but I think it
made my situation worse. I felt my whole body was in spasm. My only
relief is continuous walking. I did manage to sleep for 20 minutes after
a hot bath with Epsom salts.
was 24 when I first experienced this sensation. Typically during
stressful periods in my life for anywhere from a night to 3 nights max.
The older I get the more debilitating the attacks.
desperation I visited my doctor who is doing a whole series of blood
tests. I have had a hypoactive thyroid for 20 years. I am now 46. I
suspect I am peri-menopausal. My
doctor suspects that is the case as well and may be a reason why my
thyroid has gone wacky the past year. It seems to me that if the
thyroid acts sort of like a regulator then all sorts of functions are
likely to be affected.
anyone heard of results from live cell microscopy in terms of
determining a cause and then treating it? I had this investigation done
yesterday and was amazed to see what was going on inside my body from a
tiny pin prick of blood. The result is that I am currently undergoing a
liver cleanse and parasite cleanse (yes, they found tiny parasites in my
blood! Yuck!) After a month we will re-evaluate and continue with the
list of priorities.
hope this gives me some relief. I canít continue this way. I am so
sleep deprived that I have twice driven the wrong way down one way
streets, my temper is short, thinking blurred and productivity at work
has fallen significantly.
Relief is not far away. Ask your doctor about
starting on Requip or Mirapex. Either of these drugs will help most
RLS patients. Trazadone (an antidepressant medication) usually
The only parasite that can be found in the blood is
malaria. Medications such as liver cleanse and parasite cleanses are
not part of traditional medical practice but are common in alternative
medicine. There are no good studies supporting their use or
Sent: Monday, May 27, 2002 10:00 PM
Subject: other names for RLS
So glad to find your
website. I was doing a search on Ambien and pregnancy and somehow
came up with a link to your site. I have had RLS since I was a
small child. I always called it "the itchies" and
usually was teased by my brother and sister when I was complaining in
the car about having the itchies. However, my mother once told me
that even as a toddler she would see my legs moving when I was sleeping.
Right now I am pregnant and
my RLS symptoms have dramatically increased. I have always had
trouble sleeping due to RLS, but now I am only getting about two-four
hours of very interrupted sleep per night. My doctor has prescribed
Ambien, but I only used it one night (it worked great) because I am so
afraid of its affect on my unborn baby. I was thinking of trying
half a pill tonight but am still so worried about the baby so don't
think I will do it.
Thanks for this site and all
the info. Can't sleep again tonight, so I am reading as much as I
can on your site.
RLS and pregnancy can be a real problem. The RLS
symptoms usually worsen during the third trimester and the drugs that can
be used are quite limited. Ambien is a class B drug, which is quite
safe, but the better RLS drugs like Mirapex and Requip are still class C.
A Reply From Janet
Sent: Tuesday, May 28, 2002 12:33 AM
Subject: Ambien during pregnancy
Thank you for your
quick response. I was under the impression that Class B meds are
not "quite safe" for pregnancy. On the manufacturers
website for Ambien, they say pregnant women should not take it.
On your website, in your section under pregnancy it is stated, "Class B drugs have limited data and
experience and should be used only if clearly needed".
Please clarify for me why you call it "quite safe" when
there is limited data and experience. Do you know of pregnant
women who have taken it?
Again, thanks for your
website. I am finding much useful information.
We are always very careful with pregnant patients and
prefer to be overcautious rather than more liberal. There are very few
class A drugs for almost any medical conditions so we end up using lots
of class B drugs. They are considered "reasonably safe"
and most OBGYN's will use this class quite liberally.
Still, they should
only be taken if necessary. If your RLS is as bad as you indicate,
they may be warranted. You must decide with your OB whether or not
to take the medication using the above information.
I have had a few RLS patients take Ambien and they
had no problems.
Sent: Tuesday, June 04, 2002 1:16 PM
Subject: Celexa withdrawl and RLS
I am wondering if there is a relationship between antidepressant withdrawl
and the onset of RLS symptoms.
I was on Celexa (10 mg) for over three years to treat anxiety. I went off
the drug about 2 weeks ago. After about three days, I experienced restless
and twitching legs at night, which I likened to a severe "growing
feeling. The description for RLS fits exactly with my symptoms. The
uncomfortable and aggravating leg sensations have gotten worse, and are
noticeable when I am at rest during the day. They also seriously affect my
ability to fall asleep at night.
I have not been diagnosed with RLS in the past, though very occasionally
the symptoms while on Celexa. Is it possible that RLS is a withdrawl
symptom? Or could this be the onset of the condition, which was
and in a way masked, by Celexa? I have read on your site that many
antidepressants can make RLS more severe, but have not come across any
information that could link the cessation of taking these drugs with the
onset or increased severity of the syndrome.
Thanks for any information you can provide!!
Although antidepressants generally make RLS, in a
minority of cases they help RLS. It is quite likely that the Celexa
was helping your RLS symptoms and stopping it merely brought out the
The only way to prove this would be to restart the
Celexa and see if the RLS is improved. if you do not want to restart
Celexa, Mirapex or Requip would be other choices to treat your RLS.
Sent: Wednesday, June 12, 2002 12:07 AM
I have suffered with RLS for
about 15 years. I first saw my family doctor about this problem 10
years ago. He ran several nerve tests that all came back showing no results.
I was told to cut out caffeine, drink tonic water and to take walks.
This did not work!
I described my problem as having twitching legs
at night, not knowing anything about RLS at that time, and apparently
neither did he. Finally, must to my relief, and after several
years of complaining about this, he recommended a Neurologist.
About 3 minutes into the exam, this doctor knew
exactly what it was, RLS. Since that time he has had me on Klonopin 5mg
per night. This worked up until about 8 months ago. Now it seems as though I
have become immune to this.
I was wondering if you could offer any advice
that I may suggest to my doctor. Thank you for the support group, and hearing me
out. It really helps.
Klonopin is not one of my favorite drugs (although it is
used a lot by many doctors treating RLS) as it is addictive and tolerance can
develop (as in your case). Mirapex or Requip are now the drugs of choice and
work well in most RLS sufferers. Once on one of these drugs, you should not
need the Klonopin.
Sent: Wednesday, June 12, 2002 9:52 AM
I have been treated for RLS for about 2 years and have tried various
medications. A while ago, I tried Mirapex and that gave me severe
Up until know I have been on Neurontin with a second drug at night to
with sleep (Trazadone, Ultram and Ambien).
They work for a while and
become less effective. I also tried Klonopin for a short time, but as
as I on your site how addictive it could be, I stopped taking it.
I visited a Neurologist last week and he suggested Requip, starting out with
1of the .25 mg tablet at bedtime going up to no more than 2 of the .25 mg tablets.
and it gave me insomnia and added the Neurontin and that seemed to help a
little. I tried two at bedtime and that made the insomnia worse.
addition to insomnia, the Requip seems to make me itch a lot so that makes
it even harder to fall asleep.
It sounds like the Parkinson's disease drugs do not agree
with you. It might be a good idea to stay away from this class of drugs.
For patients who do not tolerate the dopamine drugs, I
generally recommend using the pain killing drugs. I will often use a
narcotic (Vicodin, codeine or even methadone) and alternate it with Ultram.
This regimen seems to work for a lot of my patients and if controlled
carefully, addiction or tolerance rarely occur.
Sent: Thursday, June 13, 2002 12:45 PM
I have just been diagnosed with PLMD. My questions are:
1. I had 468 leg movements over 4.5 hours of sleep with 100
arousals. Is that a little bad, moderately bad or really bad?
2. I am now on .25 mg of Mirapex at bedtime. I cannot find how this
will decrease the leg movements since Mirapex is an off-label use for PLMD.
Is this how it is thought to work - By being a Dopamine agonist, the
production of Dopamine is increased. Mirapex works on the D2 receptors
that the involuntary muscle movement is decreased. If not, how does
work for PLMD?
3. I am not seeing that people with PLMD have a greater risk of
developing Parkinson's even though both involve a Dopamine deficiency.
Would you agree?
4. My perception of my sleep issue is that I cannot go to sleep. I
know with PLMD there is a perception one has not fallen asleep because the
leg movements cause arousal. Do you think the Mirapex will help?
taking 5 mg of Ambien and am trying to stop it and I cannot tell if the
reason I cannot sleep is rebound, Mirapex (which can cause insomnia), the
leg movements or my mild obstructive sleep apnea. Do you think Mirapex
Only the arousals with PLMD's are important for causing
sleep disturbance (not the other non-arousing PLMD's). You are having
about 22 PLM arousals per hour which is considered a mild to moderate level of
Mirapex is one of the best drugs of choice for PLMD. We have no idea why it works (lots of theories, but we do not really
understand how drugs help PLMD). There is no relationship between
Parkinson's disease and PLMD/RLS other than the dopamine drugs seem to help
The only way to know if Mirapex is helping you, is to take
it (as you have been doing) and see if you sleep better and feel better during
the day. Some people do get rebound with Ambien (you can substitute a
medication such as Restoril for a few days to get off of Ambien) and this
could be part of your problem, but Mirapex can cause insomnia (or even
sleepiness) in some patients.
A Reply from Susan H.
Sent: Friday, June 14, 2002 8:36 AM
I was also diagnosed with mild obstructive
sleep apnea (I think 9 episodes/hour with a maximum episode lasting 17
seconds and an O2 sat of 95% with one instance of it dropping to 92%).
My (board certified sleep specialist) doc wants to do a second sleep study
for CPAP titration.
I read that
sleep apnea can be associated with PLMD
and presumably, as the PLMD is resolved, so is the sleep apnea. Do you
think these two disorders are tied together or do you think they are
separate and treatment for one does not affect the other?
you very much,
Obstructive sleep apnea with 9 events per hour is
considered very mild. Although more than 5 events per hour is
considered abnormal (many sleep specialists believe that in people over
the age of 40 or 50 that up to 10 events per hour may be normal),
most sleep specialists (myself included) will not order a CPAP titration
study until there are more than 15 events per hour (many even have a
threshold of more than 20 or 25).
Sleep apnea and PLMD have nothing to do with each
other. Apneas cause arousals (which resolve the apnea) and may
result in some body movement which may confuse the technician scoring the
study to think that a PLMD has occurred. That is why it often appears
that after CPAP was added, there are less PLM's. Treating PLM's has
no effect on sleep apnea.
Sent: Thursday, June 13, 2002 7:34 PM
Subject: Elastic Bandages
If this suggestion has already been posted (and I have overlooked it),
forgive me. I get relief from RLS symptoms by wrapping my legs,
the ankle to the knee, with elastic bandages, at bedtime.
symptoms are especially severe, I also wrap from above the knee to high on
the thigh. I'm careful to wrap firmly but not too tightly. This
approach may prove helpful to some of my fellow sufferers.
There are many RLS sufferers who get relief from
massaging, wrapping or using other pressure techniques to make the legs feel
better. There are many variations on this theme which does help a lot of
Sent: Thursday, June 13, 2002 9:36 PM
Subject: Hepatitis C and Mirapex/Requip
I have recently been diagnosed with RLS and also have
Hepatitis C from a bad blood transfusion 22 years ago (liver
surgery). I am interested in telling my doctor about
Mirapex and Requip for RLS.
To the best of your
knowledge do these drugs have any adverse impacts upon
the liver. My liver functionality is excellent at
this point as my body seems to have the Hepatitis C in
Thanks for the great site,
Neither drug has any impact on liver function.
Mirapex is metabolized by the kidneys, so even if liver function is impaired,
there is no problem or need to adjust the dose. Requip, on the other
hand is metabolized in the liver, so care must be taken in patients with
decreased liver function (which is not your case).
Sent: Friday, June 14, 2002 7:26 AM
Subject: Ice swipe on RLS
I am a 52 year old crazy leg person and don't sleep much. My wife uses ice on
my bare legs when I have bad RLS attacks which are often unbearable. I
have her swipe my legs with ice then follow that with drying off with a towel.
I repeat this all over my legs. It feels wonderful and gives immediate relief.
I take many medications for RLS but still need this additional treatment.
Sent: Friday, June 14, 2002 3:22 AM
Subject: My new RLS treatment
I have been on Sinemet CR and regular Sinemet for RLS for quite a number
of years. I had an increasingly bad problem with augmentation and
rebound, and although I was sleeping well at night, (my original
the afternoons and evenings were becoming horrible. I returned
to my neurologist.
He was very annoyed with me for not returning for
assessment, for nearly two years. However he suggested that I
gradually take myself off Sinemet, and slowly replace it with an Italian drug
from Upjohn, called Cabaser, or Cabergoline Tablets. I am now
on 2 mg of Cabergoline per day, (no Sinemet at all) taken with food in
the evening, and am sleeping well and have no problems with RLS at all,
during the day.
I do however get quite tired after lunch, and find
that I need to have a siesta, as I am 72, and retired this is not a
great problem for me. I thought this maybe of interest to some of
your members, who are having problems with rebound. I have had no
noticeable side effects so far. Cabergoline has a much longer working
life, than many of the other drugs available.
Kind regards to all sufferers of RLS,
You must be living in the UK or Australia as here in the
USA we call cabergoline Dostinex, rather than Cabaser. In addition, this
drug is only approved for prolactin secreting pituitary tumors (the usual dose
for this is only 2 pills per week) and thus the cost (if one can even get insurance
approval) is out of sight.
We thus have little experience with the drug and use
Mirapex or Requip which work quite well.
Sent: Saturday, June 15, 2002 9:23 AM
Subject: Sinemet withdrawal
I am curious as to how long it will take to withdraw from Sinemet. I
have been weaning down and today is day one with no drug. I am taking
Neurontin, also. I dislike the Sinemet, it has made my symptoms worse.
I need to know approximately. how long I will have to suffer until it is out of my
Thanks so much,
Tapering depends on the dose that you were taking when the
tapering started. The higher the dose, the longer it takes to taper.
Once you have stopped the drug, it should be out of your system in a few days.
Mirapex or Requip are often better choices to replace
Sinemet when tapering as they work through the same dopaminergic system.
Tuesday, June 18, 2002 1:00 AM
My doctors say that I have RLS, and I have known
for some time that I do. I am wondering if it is common to experience
the same "feelings" in the stomach? Many time I feel the
same sensations in the stomach and in the bottom area.
I have not
heard of this happening too often and I was concerned. Please let me
know of any information that you might know of concerning this situation.
There is not much information about RLS in the other areas
(than the arms and legs) but we do hear many patients having other muscle
groups involved. The abdominal muscles can be involved (if that is what
you mean by stomach) and likely the gluteal muscles (bottom) can also be
Sent: Tuesday, June 18, 2002 8:37 PM
Subject: Treatment for RLS
I have been researching Restless Leg Syndrome and I am convinced this is my
problem. I have been to numerous doctors and they have never suggested
may be suffering from restless leg.
The symptoms I have are a feeling of pain in my legs, mostly from
down and sometimes in the foot and hip. When I am sitting inactive for a
period of time, I feel the need to get up and walk and it does relieve the
pain. I cannot go to sleep at night because of the pain and again
relieves this ache.
I have been given Vicodin for pain and it does help but I don't want to get
addicted to this medication. I did get my doctor to prescribe Klonopin but
did not work.
After reading some of the letters that were sent, I am more discouraged
ever. I am sure my Father suffered with this condition for years and it
get worse with age. Before he passed away he was on constant pain medication
for his legs.
I am a 62 year old female and this problem is getting worse.
Thank you for any information you can share with me,
You should not be discouraged as RLS (it does sound as if
you have this disorder) is generally easy to treat. Most doctors know
little about diagnosing or treating the disorder.
The best drugs are Mirapex or Requip which should be able
to bring you relief without significant side effects. Try to find a
doctor who will be able to prescribe one of these drugs.
Sent: Wednesday, June 19, 2002 11:24 PM
Subject: effects of Permax without Remeron
I would like to ask a question on Permax am taking it about 8
months now (0.40mg, of which 0.10 at 1800 and
0.30 at bedtime. I also am on Enalapril. 3 1/2 weeks ago I stopped taking
Remeron to see if it has a good effect on the RLS.
In the evening and
during the night it doesn't make a difference (I hoped to be able to start
taking less of the Permax), but the daytime RLS is much, much better. I am
not depressed, but I miss the Remeron which helps me sleep. I am allowed to take
Xanax 4 times a week, but it doesn't work as well as Remeron for deep sleep
and the other 3 nights I am not happy at all.
And now my question: why am I
all of a sudden the whole night so very, very hot from top to bottom and do
I feel the Permax? It wasn't like that with the Remeron. In the list of Permax side-effects this feeling
so very hot is not mentioned. Can you explain this?
Thanks very much and greetings from,
Corrie A., The Netherlands
Remeron may help, worsen or not affect RLS. It varies
from person to person. It sounds as if the Remeron was not affecting your RLS
but its side effect of sleepiness was helping you get to sleep.
I have not heard of your side effect of getting hot with
Permax, but this drug does have a lot of side effects. In the USA we are
using Mirapex and Requip much more and they tend to have less side effects.
If these newer drugs are not available in your country,
then using a narcotic like hydrocodone or a non-narcotic like tramadol might
help you on the nights that you do not use Xanax.
Sent: Monday, June 24, 2002 4:35 PM
Subject: RLS & Zoloft
I was diagnosed with
restless leg syndrome after a sleep study. I was told I kick my
legs recurrently while sleeping. I have been on Zoloft for about 6
years. (Maybe even longer). I was told by the sleep doctor that it could
aggravate the RLS. So I weaned off it.
Now I am having problems
with my feet. I get this tingly feeling (day & night) with
particularly weird sensations in my big toes. It wakes me up even after
I have fallen asleep. I have no other symptoms. Could this be
withdrawal from the Zoloft? How long will it last if so? Should I
call my doctor? This has been going on for a couple of weeks now and
seems to be getting worse.
Thanks for your help!
The leg kicking is PLMD, not RLS. You may indeed have
RLS which may be the new sensations that are occurring in your legs. Antidepressants may worsen RLS, but they may also help the disorder in
minority of patients.
It could very well be that this drug was helping you and
now you are worse of it. There is really no withdrawal from Zoloft but
rather worsening of pre-existing conditions that may have been treated
successfully by the Zoloft.
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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
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