Patient letters on RLS symptoms and remedies- Page 40
If you have questions or wish to describe your symptoms and treatments,
send us email by clicking below.
Sent: Monday, March 18, 2002 7:18 PM
I have been taking OxyContin for the
past 2 years with good results. I am on it for 2 weeks, and then off 1 week, using
Ultram and Advil. I'm not sure that the Ultram is helpful,
and my drug holiday is awful.
However, I now find that about 1 and 1/2 hours after I take 20mg of OxyContin
I wake up and need to take Advil to help with the aching. In addition I also use tiger balm which helps to also eliminate the pain.. This
regime is working less well, and I seem to be awake every 2-3 hours, with
trouble going back to sleep. Currently I am exhausted and am probably
not making much sense. Has my body become so used to the OxyContin that
it no longer works?
I once used Permax and got a very bad reaction. Had flu like symptoms
and also developed buzzing in my ear which remains. This was about 3
Currently I'm frustrated, tired and depressed due to lack of sleep. Would
you think methadone might be helpful? I have steered clear of Mirapex
because of the reaction to the Permax.
Sue from Tucson
It is possible that you are getting some tolerance to
OxyContin, but if that is the case, there may be cross tolerance to other
narcotics such as Methadone. It still may be worth a try to change to
Methadone if all else fails.
Mirapex or Requip are worth trying before changing to
Methadone as the problems you had with Permax are not common with the newer
Parkinson's disease medications.
Sent: Tuesday, March 19, 2002 10:49 AM
Daytime sleepiness with Mirapex
Yesterday I started on Mirapex in an attempt to replace the Sinemet I
have been on for a number of years. My doctor has started me on 0.25 mg at 5
PM and 11 PM, a low dose, I think. I am flabbergasted at the result in
such a short time. I have had only the mildest sensations and now none
It seems like a miracle!!!
HOWEVER.. the sleepiness side effect is very worrisome to me. I had
great difficulty getting up this morning and have felt rather in a fog
all day. Will this pass in time or can I expect that it will be an
ongoing problem? If so, I will be unable to continue with the Mirapex
much as I am amazed at the effect.
I will appreciate your input on this.
Mirapex does work extremely well for most RLS sufferers.
Daytime sleepiness can be a problem, but this usually occurs at higher doses
(generally over 1.5 mg per day). The starting dose that I use is .125 mg
tablets (sometimes even half of these tablets if you can cut the small
tablets) and only increase if necessary.
You may want to see if lowering the dose still takes care
of your symptoms and eliminate your daytime sleepiness. There is a
chance that with time (a few weeks) you may adjust to this side effect. If not, change to Requip and start at the lowest dose (.25 mg).
Sent: Tuesday, March 19, 2002 2:51 PM
Subject: Tolerance to Requip?
I am a 59 year old female with severe RLS. Sinemet was a nightmare,
Benzodiazepine meds make
the RLS worse, 2 Darvocet-N 100 at night did not work. I tried
Mirapex, .25 at bedtime. It worked
wonders, but in 2 days I was having severe headaches. I tried
stopping the Mirapex, the headaches
went away, back on it and the pain came back.
I was hoping the side
effect would go away with
time, and the pain seemed the lesser of the 2 evils, so I took the
Mirapex 2 months before admitting
defeat. I changed to Requip, starting with a low dosage. It did the
job without the pain, however, I
have been on it 3 months now and have to keep increasing the dosage.
I am up to 1 mg. at bedtime
and usually another .5 mg. a couple of hours later after still
I am starting to have the
headaches again with the higher dosage. The RLS is starting earlier
all the time, by 5 or 6 P.M. When
I wake up in the A.M. it is there, if I try to take a nap during the
day, I can't because my legs "won't
let me". Have I developed a tolerance to the Requip? Do I need
a drug holiday from it? Where do I
go from here?
I don't want to try Permax after reading about the bad
side effects. My GP is very
good about working with me on trying things you have recommended. I
have an appointment with
him in 2 days. Please help guide us Thank you so much for being here
for all of us. You are a lifesaver
Faye in East Tennessee
It does sound as if you are developing some tolerance to
Requip. Normally we would just increase the dose but in your case you are
limited by side effects. What might work is to add a narcotic and use a
lower dose of Requip in combination.
For severe RLS, my drug of choice is methadone. You can
also try Ultram and alternate with methadone if you wish.
Another choice would be to combine a lower dose of Requip with
Neurontin, but most patients seem to have side effects (often sleepiness) with
adequate doses of Neurontin.
Sent: Wednesday, March 20, 2002 8:38 AM
Subject: Magnesium/Quinine combo
I've found that taking both magnesium and
quinine together control my RLS almost entirely. I got this suggestion
originally from one of the chat rooms. I've tried them separately to
see whether one or the other is actually the therapeutic agent, but
neither worked well by itself.
I get the quinine from drinking tonic
water, which I enjoy as an alternative to soda. There isn't much
quinine in there, but it seems to be sufficient.
Thanks for your treatment for RLS. We will post it
to see if others may benefit from your experience.
Sent: Friday, March 22, 2002 8:18 AM
I wrote you recently because OxyContin had stopped working for me. On your
suggestion my doctor gave me a
prescription for Mirapex. However, he didn't tell me how to increase it
and when to increase the dose if it doesn't seem to help. When
does Mirapex go into action; does it take a week or so, or will I get quick
feedback. He also gave me a prescription for Klonopin. He said
to use it if I couldn't get to sleep. Would you agree with this
I have been depressed and he wanted to give me an antidepressant. I
believe my depression is due to LACK of sleep. As I understand it antidepressants
can increase the RLS--is there one you would recommend.
My thoughts are to try the Mirapex and Klonopin, and if I get some relief
from the extreme tiredness and depression to forget the depression
I look forward to your very helpful feedback.
Mirapex will generally work immediately. We have
patients increase it slowly to avoid side effects. I have my patients
increase the dose by 1/2 to one of the .125 mg tablets every 5 days if the
pervious dose is not helping (see our RLS/PLMD Treatment Page for more
Despite Klonopin being used a lot for RLS/PLMD, it is not
a drug that I like to use. It has a very long half, is addictive and
causes daytime drowsiness in a high percentage of users. I prefer to
prescribe Ambien instead.
Most all antidepressants may worsen RLS (although
sometimes they may even help). Serzone, Wellbutrin, and Remeron may
have some theoretical advantages over the others, but it does vary on an
individual basis considerably. I like to wait before I prescribe an
antidepressant and see if there is any depression left after I have resolved
the patient's RLS and sleep problems.
A Reply from
Sent: Sunday, March 24, 2002 10:46 AM
I'm sorry to bother you with my Mirapex
problems again/ I've just started taking it, and have done it for 3
nights. My doctor gave me Klonopin to take with it.
Night 1 Before bed I took one .125 Mirapex at 9:30 PM. I couldn't go
to sleep so at 10:15 I took Ambien. Woke again at 1:00 and then slept
till 6:00. Felt very tired, like a hangover. Exhausted, and depressed.
Night 2 9:00 Mirapex, 10:30 Klonopin, no sleep at all, 2:00
another Klonopin. My legs didn't ache, but I just couldn't fall asleep.
Woke at 6:00AM Exhausted, etc. I probably catnapped for about 4
Night 3 Took Mirapex after dinner. Bed at 9:45 no sleep-,midnight took
an Ambien and also used Tiger balm as my legs were aching. The Mirapex
has generally kept my legs from aching and being agitated. Probably slept
about 4 hours.
I will increase my pill by half after I've gone thru 5 days. right??
I have 2 questions
1. On the info with the Mirapex it said it could cause insomnia,
is that my problem ? Is it the wrong drug for me or will this problem
2. Since you suggested Ambien, when should I take it. Should I take it
when I go to bed or with the Mirapex or when I wake up?.
One more question: Should I be seeing a neurologist or a sleep
specialist? My current doc who is willing to learn with me is very nice and
helpful. Do you know anyone in Tucson or Phoenix?
Thanks for your help.
It sounds as if the Mirapex is taking care of your RLS
problems. Mirapex should be increased only if there are persistent RLS
symptoms that need to be treated.
Ambien is supposed to be taken at bedtime, just
shortly before going to sleep. Some patients will take another one if
they wake up at night (a maximum of 10 mg total per night), but it should not
be taken too close to waking up time, or daytime drowsiness may occur.
It is possible that Mirapex is causing some insomnia, but
stopping other drugs and other factors might be causing your insomnia. It is often very difficult to tell.
If you are convinced that Mirapex is
the problem, then possibly a change to Requip may be worth discussing with
Any doctor can help treat your RLS, if he is willing to be
educated and learn how to use the RLS medications. The best choice is a sleep
specialist like myself who deals with lots of RLS cases, but as there are very
few of us around, a sleep specialist, neurologist or GP who has an interest in
helping should do. The RLS Foundation now has a list of doctors who will treat
A Reply from
Sent: Tuesday, March 26, 2002 8:01 AM
I've been taking Mirapex .125 for 5 days
now. It works for me, but for a limited period of time. I take it after
dinner because I had read that taking it then would cut down on side effects
to the stomach. It causes some queasiness for me. I wake about midnight with
very sore ankles, and calves etc and have to get up and move around with
difficulty going back to sleep.
If I increase the dose by 1/2 a tablet
will that create a longer time for it to be effective for me--that is to be
effective until at least 6:00AM. Do I continue to raise the dose until it gets
me thru the night.?
In addition (I guess the above isn't the last question!!) When I take Ambien
I do sleep, but I am still very tired the next day with no energy.
It leaves me with a hangover.
This is a very complicated process. I'll call the Foundation today to
see if they can recommend a sleep specialist to me who has dealt with RLS.
Again, many many thanks for your very helpful communications,
Taking more Mirapex will both increase the effect and
duration. The amount needed for each person can vary quite a lot which
is why we recommend increasing the dose by 1/2 to one tablet every week to
find the lowest dose which takes care of the symptoms.
Ambien does not affect most with a hangover, but
decreasing the dose (taking half a tablet for example) often will correct
Taking more Mirapex will both increase the effect and
duration. The amount needed for each person can vary quite a lot
which is why we recommend increasing the dose by 1/2 to one tablet every
week to find the lowest dose which takes care of the symptoms.
Ambien does not affect most with a hangover, but
decreasing the dose (taking half a tablet for example) often will correct
Sent: Friday, March 22, 2002 2:17 PM
Subject: Lost stages of sleep
I have been on 1.0 mg of Mirapex for a year now and it has completely cleared
up my RLS/PLMD. I know this because I have had 3 sleep studies done in the
interim and they have showed that the incidents of RLS/PLMD is now zero,
down from 20+ per hour. T
he reason I am emailing you is that the sleep
studies have shown that now I get absolutely no Stage 3 & 4 of sleep and
minimal REM. This lack of restorative sleep has left me tired all day long,
day after day. Would you know of a cure that could restore these levels of
sleep? Any help you can lend will be greatly appreciated.
Sleep in the laboratory is definitely not like sleep at
home. With the strange bed, environment, and all the monitoring
equipment attached some sleep disruption must occur. It is very common
to see very low to no stages 3 and 4 deep sleep in patients over the age of
50 in the sleep lab. REM is often decreased somewhat also.
It is not advisable to take medications to increase
stages 3 and 4 deep sleep. Drugs like Elavil (which very often worsen
RLS/PLMD) were used in the past to improve deep sleep and help fibromyalgia
with very limited success.
Sent: Friday, March 22, 2002 10:50 PM
Subject: RLS and BMS
Is there any relationship between RLS and Burning Mouth Syndrome? I
have discovered that when I've taken Klonopin for RLS, that my burning
mouth symptoms disappear. (It's hard for me to stay on Klonopin,
however, due to daytime sleepiness.)
Mirapex and Ambien help the PLMD,
but do nothing for burning mouth. Any ideas would be greatly
I have never heard of Burning Mouth Syndrome, so I can
safely say that there is no association with RLS. How Klonopin helps
is certainly a wonder and you are very typical of the daytime sleepiness
seen with Klonopin.
Sent: Saturday, March 23, 2002 10:54 AM
Subject: Long term affects of Sinemet
I was diagnosed over 10 years ago with RLS. I have recently read on the
RLS website about possible long term damage Sinemet can cause.
I have an HMO and it was pure hell to try and see a neurologist.
Obviously I have been able to see one, but it was no picnic trying to
get to this point. I'm not entirely happy with this doctor. He knows
nothing or won't discuss with me these possible long term affects of the
medication I am on. My husband recently left me for a younger woman
which naturally affected my sleep cycle for a while. I discussed this
with my neurologist and his only comment was, "Well, turning 50 can be
rough on a man."
I tried to attribute the sting of the comment to my over-sensitivity at
the time, but he continues to have a very blasť attitude and gives me
vague answers or shoulder shrugs when I ask him about recent news on
When I have my now yearly appointment with him, he asks me if my legs
are still bothering me and them imitates the shaking, as if mocking it.
When I tell him about the increased discomfort when I am premenstrual,
his answer is to just take more medication.
In short, my opinion of this doctor has sunk to an all time low.
While I try and find another neurologist I can see through my IPA (which
could take weeks) , can you provide me some information or tell me where
I can find out about the possible long term neurological effects of
taking Sinemet? This is a serious concern for me.
I am currently taking one time release 50/200 mg in the early evening,
another at bedtime along with a non time release 25/100 . When I am
premenstrual, I sometimes have to take half of a 25/100 at 2-3 am
because the symptoms are far worse during that week.
I realize I have to take medication for this disorder, but I would like
to be as med free as possible.
Thank you for your time, and I look forward to your reply.
When the Sinemet dose is over 2 of the 25/100 tablets or
one of the 50/200 mg tablets per day, there is a very high risk of
developing augmentation and rebound of your RLS symptoms. Patients who
need the higher doses of a Parkinson's disease medication are generally
changed to Mirapex or Requip, which do not cause these problems (and seem to
be very well tolerated in the long run) and tend to control RLS symptoms
even better than Sinemet.
Your HMO drug insurance will likely not want to cover
Mirapex or Requip at first, but you can "encourage" your doctor to
put in a prior authorization form which will allow coverage for these drugs
in the vast majority of cases.
Reply from Elaine
Sent: Monday, March 25, 2002 10:35 AM
Subject: Re: Question about symptoms
You were very helpful with my last inquiry so I thought I might impose
upon you further.
I have read various descriptions of symptoms of RLS in books and on the
web . Patients describe everything from a "tingling" sensation to a
"crawling" feeling. Mine seems a bit different, and I wondered if
had ever heard this before, because I haven't read of anything similar.
My sensation is a very distinct, quick jolt rather like a mild electric
shock in my hip flexor area and/or in my knee joint. It occurs very
suddenly and continues in no particular pattern. It can wake me from
sleep and often does in spite of the medication.
It can occur in either
or both knees, and either or both hip flexors...sometimes alternating
between the hip and the knee. I don't have the sensation in other parts
of my legs. Like other RLS sufferers, I am compelled to move my legs and
sometimes they jerk involuntarily as a result of the sensations.
Standing up or walking around is the only alleviation.
Very truly yours,
The feelings that you are describing are not uncommon in
RLS sufferers. Some have those sensations in addition to the more
"traditional" RLS complaints.
Sent: Sunday, March 24, 2002 10:22 PM
Subject: Thank you
I can't believe that I finally know what it is, by now I assumed that
I'd never find anyone else who ever understood my description of what
RLS felt like.
I don't remember when it started but by the time I was four my mom and I
were already calling it "feet cramps". It seems like I can
thousands of nights having to stretch my legs or walking around my
bedroom so exhausted and crying from frustration. When I was six I
started getting it in my hands as well, though not as often (probably
about 30% of the time). I don't remember exactly when they went away
but by the time I was 8 they were gone.
Not too long ago I realized
that it might have been caused by Dimetapp as I had horrible ear aches
during that time and was taking it regularly. For the next 13 years I
didn't have more than 5 episodes of the most minor RLS - and then I
started using Heroin. It was during Heroin withdrawals that RLS came
back worse than ever - in fact it was what I'd dread most about getting
The only good thing to come out of it is that's how I met the
only other person I ever knew who had also had RLS. He also got it
during heroin withdrawal and said it had happened to him a few times
before when he had taken Dayquil (I think he said Dayquil, if not it was
something else for colds/congestion).
Well I was so excited to have
someone who finally understood what it felt like. I mean no matter how
I've tried to explain it people would never understand, I could never
find the words. Now tonight to find out that it's a real recognized
condition with a name makes me so happy - it's like I've been vindicated
for all the times people thought I was overreacting or had a sore
muscle. Thank you for giving me that feeling.
I feel silly saying this because what do I know, but both my friend and
I had RLS brought on my cold medicine and I wonder if anyone's ever
looked into what effects a decongestant has that could cause this. I
was young though and can't be sure the RLS was caused by the Dimetapp,
but what I am sure of is it was caused so severely by heroin withdrawal.
Now this isn't limited to my friend and I - I mean this is why they call
it "kicking the habit" - because of all the leg kicks you get.
seeing what chemicals are abnormally produced (more or less) in a person
during heroin withdrawal I would think could lead to some answers? I'm
sorry if I'm being foolish and this is something that's been
investigated. I just thought if it wasn't I should share.
Anyway, thank you again, tonight you gave me an answer to something I've
looked for all my life.
The problems with heroin withdrawal for most (that is all
but those who happen to also have RLS) have nothing to do with the causes of
RLS. Heroin and any other narcotic treat RLS very well, and when
withdrawing from it, worsening of RLS would be expected.
Antihistamines, such as in Dimetapp or Dayquil will most
often worsen RLS.
Sent: Tuesday, March 26, 2002 4:48 PM
Last Jan I had one knee replacement surgery.
Prior to the surgery I had RLS but now it has become more severe. Is
this typical? I already take Neurontin and Mirapex Is
there anything more effective for use after knee replacement?
Surgery or any trauma to the body will often worsen RLS.
Both those drugs are very good RLS drugs, but the
response varies from person to person. With Mirapex, the dose may have
to be increased after surgery.
Narcotics will often work when other drugs fail.
Sent: Wednesday, March 27, 2002 12:53 AM
Subject: As needed use of Mirapex?
I hank you for your website. I have learned a great deal
about RLS from fellow suffers and your medical info.
My RLS is not too bad. I do get up several time each
night from it. But, I have accepted this as part of my
life. I would like to take Mirapex on an as needed basis
when I have to sit for any length of time for any of the
- movie or show
- long meeting
- a medical procedure such as laser eye surgery
Is it ok to only take Mirapex on an as needed basis? Are
there any drawbacks to doing this other than having to
contend with daily RLS and its symptoms? I do not want
to become too dependant on such a powerful medication
that may have a negative effect a few (or more) years
down the road. I also do not want daytime sleepiness.
Again, thank you for your website.
Mirapex has been used successfully on an as needed basis.
There is no reason why it cannot be taken about 1-2 hours before situations
where RLS worsens. There are no long term problems noted with using
Mirapex and sleepiness mostly occurs at higher doses (more than 12 tablets per
Sent: Wednesday, March 27, 2002 4:48 AM
Subject: RLS drugs and Psychiatric diseases/drugs?
I am a 37 year old male with a mental illness. I have been taking 4 mg.
Ativan (for anxiety) and 5 mg. of Risperdal (for paranoia and auditory
hallucinations) for several years. I began suffering from RLS about two
months ago. I have trouble falling asleep and after falling asleep for
one to two hours, I am awakened by uncomfortable agitation in my calves and
At first my psychiatrist believed this was caused by the
and I have been slowly changing to Seroquel. Additionally I have been
taking Benadryl to help me fall asleep. The ongoing switch to Seroquel had no effect.
About a week and a half ago, I started Neurontin at 100-300 mg. at
However, my RLS became worse. Before I started the Neurontin, I found
the RLS went away at dawn.
After, I would have RLS symptoms into the
morning. I stopped taking the Neurontin after 6 days of use. Since
have also had RLS symptoms occasionally during the day and night while awake.
Taking a hot bath seems to alleviate this. Today, my psychiatrist
switched me from the Ativan to 1.5-2 mg of Klonopin. He does not seem to
taking an aggressive approach to this problem; I have not fallen asleep
before dawn for two weeks, and the occasional daytime RLS has continued.
question I have is this: what RLS medicines would be appropriate to use given
my mental illness and psychiatric medicines? How long will the Klonopin
to work, if it does work?
Thank you for your advice,
Mirapex or Requip generally work best for RLS and do not
interact with many drugs. Risperdal and Seroquel are both dopamine
antagonists which can worsen RLS and decrease the effectiveness of Mirapex or
Benadryl and other antihistamines almost always worsen RLS,
so these drugs should be avoided.
Klonopin usually works right away, so what you get at first
(at any given dose) is what you will experience in the future.
Sent: Wednesday, March 27, 2002 7:05 PM
facilitate a support group and the question has come up as
to the maximum amount of mg's you can safely take per day on Permax, Mirapex
and Requip. Can you enlighten me on this issue? Thanks for
all you do for us,
There is no official limit for any of the drugs
when used for RLS, other than the upper limit when used for Parkinson's
disease (which I list on my RLS Treatment Page).
Generally, when Permax exceeds about 1 to 1.5 mg
per day, Mirapex exceeds 3 mg per day and Requip exceeds 6 mg per day,
there is little reason to believe that higher doses will help.
Sent: Thursday, March 28, 2002 5:00 AM
Subject: Twitching legs
I sure hope you can help me. It's 5:00 am and I haven't
slept all night. I've had problems in the past where my legs will
start jerking really badly. It almost always happens at night.
On March 20th I had a tummy tuck done. Starting on March 25th I have
felt a surge in twitching incidents. I'll be fine all day, but when I
lay down to sleep at night, the spasms are uncontrollable. I'm
exhausted! I've taken sleeping pills, but they don't help. It's
that I'm not sleepy, it's just that every time I think I might be able
to drift off to sleep, these crawling, twitching sensations come over my
legs. These sensations seem the most intense around my knees.
Please tell me what I can do? It's making recuperation from my surgery
very difficult. I just can't get to sleep.
Your symptoms are compatible with RLS. Trauma (which
includes surgery) often worsens RLS. Medications such as Mirapex or
Requip will help RLS in most RLS sufferers. Speak to your doctor to see
if this therapy is appropriate for you.
Sent: Friday, March 29, 2002 1:46 PM
Subject: Who can treat RLS?
I have had RLS for years, and have only just recently realized that there is
something I can do for these horrible symptoms. They have progressively gotten
worse in the past year, and I am lucky to sleep 1 hour at a time.
was told I would need to see a neurologist for this by a coworker, but with
all of the information I have read, I have every symptom described.
just call a general physician with my thoughts of my condition, or should I
just make an appointment with a specialist? I am a 42 year old single
mother of two teenage boys and work full time for a dermatology practice,
but I would like to keep my costs down as much as possible,
Please help, thanks,
RLS can be treated successfully by a general doctor,
neurologist or sleep specialist. If any of these physicians are
interested in the disease and are willing to familiarize themselves with the
drugs used for treatment, then they can easily take care of your problems.
The concern is that most generalists and neurologists are
not familiar with RLS and do not want to take the time and energy involved to
learn enough to treat the disease. Even many sleep specialists are not
current on RLS and prescribe older drugs that may do more harm than good.
My suggestion is to check with your local RLS support group
to get a recommendation from other RLS sufferers for a doctor who has an
interest in treating RLS and has successfully treated other patients.
Sent: Saturday, March 30, 2002 5:31 AM
I have had RLS for 40 plus years. In 1995 I was glad to get Sinemet, which
worked for a few short hours, if I did not eat. Approximately 3 years
I started Mirapex .125 (4 per day); Ultram 50 mg (3 per day) and Clonazepam
.5 (2 per day) for the RLS. This was paradise. My other medicine
of Premarin, and for about a year now, Clonidine .1 (3 per day) and
recently have added Diovan (1 per day) 160 mg/12.5mg.
Two weeks ago, I got the bug others were having, starting with my left ear
and gland, going to my chest with a lengthy and determined cough to the
point of diarrhea and nausea. My muscles would barely let me move.
morning my blood pressure was 58/45. My pulse was high. I sat
lot which is never good for me. I did not go to a doctor.
Like a tornado from out of nowhere, the RLS started like electric shocks
with one subsiding and another one starting.
What happened? What can I do?
It is difficult to figure out why RLS worsens at time.
Any stress to the body, such as your bad flu, may exacerbate RLS. Often
it gets better with time, but for many the RLS just continues at the same
level. You may also have taken medication while you were ill that could
worsen RLS (antihistamines, anti-nausea agents).
When RLS worsens, it may be of benefit to increase the
Mirapex dose slowly until the symptoms are controlled. You should
discuss this with your doctor and you can use our RLS Treatment Page to guide
him (if he needs the help) on how to increase your Mirapex dose.
Sent: Sunday, March 31, 2002 2:48 AM
Subject: Restless Leg Syndrome (Relief)
I am writing this email to hopefully help some restless leg sufferers.
My mother in law has suffered from restless leg for years and was becoming
depressed at not being able to sleep etc. She also suffers from arthritis
and is usually in pain. Her doctor prescribed Codiene Phosphate
relief tablets and since taking them she has not suffered from restless leg syndrome.
It may be a coincidence but for sufferers who cannot find relief, I am sure
it is worth a try.
Codiene is a narcotic which works well for any type of
pain, including RLS. If she needs to take the medication for her
arthritis and it also helps her RLS, then that would be reasonable as long
as she tries to keep the narcotic dose as low as possible.
If, however, her arthritis pain can be controlled with
the NSAID's (Motrin, Vioxx, Naprosyn, etc.) then a drug such as Mirapex or
Requip would better serve for the treatment of RLS and avoid the use of
narcotics on a routine basis.
Sent: Monday, April 01, 2002 8:01 AM
Subject: Travel Twitch!
Hopefully you can help with some suggestions. I have had RLS for the
years or so and have found some relief from CARBIDOPA/L-DOPA 25 mg (Generic
for SINEMET). I will be traveling to Europe next week (a 14 hour flight) and
have this fear my legs will have a mind of their own. Do you have any
suggestions? I will have an aisle seat so that will help.
Thank you in advance for your help!
Long Beach, CA
Getting an aisle seat is a very good idea. As the
RLS gets worse with sitting, having the unobstructed ability to get up
when you want should help considerably.
Sinemet should only be used in very low doses (no more
than 2 of the 25/100 mg tablets per day) or else problems with rebound or
augmentation may occur. We far prefer using Mirapex or Requip which
do not have these problems.
What works for many RLS sufferers is to take an extra
pill (usually of Mirapex or Requip) about 30 minutes before getting on the
plane. This can be repeated 6-8 hours later if necessary.
Other medications, such as narcotics or Ultram can also be taken when
boarding, but they may cause some drowsiness (which may be good or bad
depending on the length of the flight and the timing of the duration of
the pill with when you have to be alert upon landing).
Monday, April 01, 2002 8:44 AM
Subject: RLS & Chronic Fatigue Syndrome and Super Blue or Blue
was really excited to find your web
site. I thought my mother had gone mad when she told me it felt like
something was crawling around under her skin. Needless to say she does
have RLS and was recently diagnosed. But, to make matters worse
she also has Chronic Fatigue Syndrome which she has had for at least twelve
years that I know of.
This is also something that is very hard to deal
with. I wanted to let you know what she has been using that seems to take
the edge off and has worked wonders for her since taking some medication
is very difficult for her with also having the Chronic Fatigue.
called Super Blue or Blue Stuff. It is made here in Oklahoma where we live
and is made with Emu oil, Aloe Vera and other stuff. This also helps with
other things as well. I hope this might be helpful for someone.
If any of
you have Chronic Fatigue Syndrome on top of having RLS please feel free to
email me, I would be interested to know what you are doing for this or if
anyone needs the address for Blue Stuff please feel free to email me.
Bless all of you,
It is not uncommon to see Chronic Fatigue Syndrome
with RLS as these patients are very often very sleep deprived due to the
RLS (and often from the PLMD that can cause poor quality sleep without
the patient even being aware that there is a problem). Often when
the RLS is treated with effective medications (usually Mirapex or
Requip), the Chronic Fatigue Syndrome disappears and does not need any
Sent: Wednesday, April 03, 2002 6:25 AM
I It must have something to do with misery
loving company because I got some kind of relief reading that there are
people out there suffering from the same affliction.
I am 45 years old and I know I have had this
since almost as long as I can remember, I have mentioned it to my doctor
and I know she didn't have a clue as to what I was talking about. Although
to her credit she did tell me on a subsequent visit that she did look up
an article on RLS. So basically I have been left to believe that there was
no choice but to suffer through this.
I will out line in point form my symptoms and
other facts that may be interesting or important to someone compiling data
on this condition :
1) I have a family history of RLS,
particularly my maternal grandmother who I remember complaining about
sleep problems and restless legs for her whole life.
2) My symptoms were magnified during
pregnancy. I honestly thought I would lose my mind, especially in my second
pregnancy, and I knew that even if I did want more children I would not
have been able to go through that again.
3) My symptoms occur in both my arms and legs,
often on one side ( left arm and left leg ) .
4) The symptoms get much worse the week prior
to my period.
5) I always thought the RLS was a result of
poor sleep but now I am seeing it as the cause.
6) My doctor prescribed a couple of
different sleeping pills- I forget what their names are - but they were
totally ineffective. My doctor is young and very, very cautious about
prescribing medication. The last thing she gave me, again I forget the
name, but she said it was a drug that was in the Prozac family. I tried a
few and perhaps I should have given it more of a chance but it wasn't
7) I find it is getting worse with age and I
don't want to live the rest of my life like this. Finding this
site is my first step in taking a more active approach to doing something
about it. I don't think there is much hope in waiting for family doctors
to help when they don't even know what it is.
Thanks for giving me the opportunity to talk
to people who understand what I am going through, any suggestions that may
help are very welcome.
You actually have a textbook case of RLS. There is a
family history of the disease in 60% of sufferers, it gets worse during
pregnancy (especially the third trimester), as it worsens it tends to occurs
in the arms (or even other muscles in the body), and it does tend to worsen
Prozac and other SSRI type drugs may help RLS, but tend
to worsen more patients than they help. If you do not get relief in
the first week or so, it is unlikely that you will benefit from this class
You should speak to your doctor about starting on Requip
or Mirapex (available in Canada), both of which have an excellent chance of
completely relieving your RLS problems.
Sent: Wednesday, April 03, 2002 9:25 AM
Subject: Sinemet or Clonazepam for RLS?
I have read/browsed all of the e-mail on your site, and perhaps I missed
any comments you may have had on Clonazepam. I am on Carb/Levo (Sinemet)
and am breaking through my prescribed dosage of 1 pill at bedtime.
However, the dosage is very low 25/100 mg and most nights I wind up taking
half of one pill on top of the already 1 that I took at bedtime.
Another co-worker has RLS and he is on Clonazepam. I was curious if that
medication is better than Carb/Levo. I was also prescribed Mirapex 0.125
mg and that one pill did absolutely nothing for me. I see you are leaning
towards Mirapex and I was thinking maybe two pills at night would be better
of the lower dosage Mirapex over the Carb/Levo.
Thank you for your answers,
Jean M. I.
Sinemet, at the low dose that you are taking, is fine.
However, you have already noted that you may need a little more and are thus
approaching the maximum 2 tablets per day. I prefer using Mirapex.
Most patients need between 2-6 of the .125 mg tablets per day for the
Mirapex to be effective.
Reply from Jean M.I.
Sent: Friday, April 05, 2002 5:41 AM
Well - - I took 3 and 1/2 tablets of Mirapex and was still awake and legs
hurting until 1:00 (started at 9:30) and so I decided to heck with this I need to get some relief as I am a working gal - so I took 1/2 tablet of
Carbo/Lebo and finally fell asleep. The only problem was at 5:00
I was (and still am) very groggy and you should see the bags under my
May just try 5 pills tonight as they are the .125 dosage.
Does this sound logical?
Jean M. I.
There is a lot about clonazepam on our site under the
name Klonopin. It does help the RLS a little, but the main thing it does is
put RLS sufferers to sleep (just like Valium which is a similar
benzodiazepine) thus eliminating the RLS. It tends to cause daytime
sleepiness and addiction/tolerance which is why I do not like the drug.
Mirapex is generally increased by 1/2 to one pill
every 3-5 days to assure no side effects. It is quite puzzling
that the dose of Mirapex you are taking is not sufficient to resolve
your RLS discomfort. Most RLS sufferers find that the medication
works better if taken 1-2 hours before the onset of the RLS symptoms.
Sent: Wednesday, April 03, 2002 1:20 PM
Subject: Drug interactions
Would like to know the interaction of
Mirapex with Allegra and Mirapex with Zyrtec. I read somewhere that Zyrtec
caused the symptoms of RLS to worsen.
All antihistamines tend to worsen RLS. This can be
somewhat variable with some RLS sufferers having very little problem. The newer antihistamines (Zyrtec, Allegra, Claritin and the newest one,
Clarinex) do not cross into the brain and have less of a tendency to worsen
RLS. I have many RLS sufferers who can take these newer drugs, but
many others cannot.
Sent: Wednesday, April 03, 2002 2:16 PM
Subject: Mirapex (see previous letters above
Friday, March 22, 2002 8:18 AM)
I have taken Mirapex for 13 days.
I now take 2 each night..
During the night I have pain in my calves, ankles, and hips which wakes me
and then I have big difficulty returning to sleep. I have added Advil,
but with little success. The agitation of the RLS is not there, but the
pain makes me need to move my legs and keeps me awake.
When I'm awake in the wee hours of the morning my legs are tense, not relaxed. nor
is my body relaxed. Thus with the pain, and tenseness of the
legs I have a difficult time getting to sleep. My stomach is also upset. Does
Mirapex do anything for pain, or does it increase it.
Previously I was on OxyContin, and I slept better. I didn't have as
much pain, and when awake at the end of the night my legs were relaxed and
comfy. Periodically I would have a bad night, but not like now. Did
the OxyContin suppress the pain?
I stopped OxyContin after 2 years because it ceased to work. Even though
I took drug holidays every 2 weeks I was very happy with the results
of the OxyContin.
I'm discouraged with Mirapex because it reminds me of Permax
which I couldn't t continue with due to similar symptoms. Lack of sleep is
such a problem You had suggested Requip if I continue to have insomnia.
Is it that much different from the Mirapex and Permax so that it might
work better for me. What would the pill routine be.
Or am I gearing up to Methadone? (or maybe back to OxyContin since I've had
a months break from it--what do you think???)
Again much gratefulness for your knowledge and patience.
Sue in Tucson
Although the 2 tablets of Mirapex are helping the
restlessness, it is quite possible that the residual pain that makes you
want to move your leg is still part of your RLS. What I generally do
for this, is to increase the Mirapex.
If Mirapex is causing side effects at your current dose
or with higher doses, then Requip would be a consideration. Each of
the 3 dopamine agonists available (Permax, Mirapex, & Requip) are
somewhat similar, but the side effect profiles can vary considerably and it
often takes trial and error to see if they are better or worse.
Adding a narcotic (with drug holidays or alternating with
the non-narcotic Ultram) is often a good choice. Methadone is a drug
that I have found quite effective for my severe cases. Milder cases
will often respond to the weaker narcotics such as Darvon.
Sent: Wednesday, April 03, 2002 3:05 PM
Subject: Typical Symptoms
I have the usual symptoms described by many
others here, except that the "pain" as it were is mostly in my
arms. I do however suffer with the need to move my legs, especially while
watching television at night. The worst part for me, though, is trying to
sleep with that "creepy" feeling in my arms.
I have tried lying
on top of them either face up or face down, twisting them around each
other to put isometric pressure on them, but to no avail. Sometimes my
legs feel the same way while sleeping. I work as a copier technician, so I
know all the moving, lifting, twisting, kneeling, screwing and unscrewing
of screws, etc, is not good for me.
About two years ago, I had hurt my back
lifting a copier, and was given Ultram for the pain. It was like God had
granted me mercy! I was able to finally get comfortable and get to sleep.
It wasn't a drowsy feeling, or a doped feeling, just a "lack" of
feeling the creeps. I told him about it, and he prescribed me Ultram at 2
pills at night before bed (100mg.). That has worked beautifully for me.
However, I had to move to Tallahassee, and I got a new doctor (the only
one that was taking new patients on my health plan) who feels that Ultram
is too addictive, and prescribed me Klonopin instead (from what I have
read, it is Klonopin which is addictive, not Ultram). Klonopin may
work for others, but all it does is turns me into a moody zombie,
especially at work the next day. I told her about my experiences and asked
if she would put me back on the Ultram which works, but she does not want
to do so.
What other options do I have (besides getting a new doctor,
which I cannot)? By that, I mean what other drugs are considered
"non-addictive" that would work that she might be agreeable
with? Any suggestions would be greatly appreciated.
Ultram does have a small addictive potential, but if used
carefully (just enough to relieve the RLS symptoms) it will rarely cause
addiction in RLS sufferers (unlike pain patients who may have a higher
potential for addiction with Ultram and even narcotics).
Klonopin is a much more addictive drug, but doctors are
much more familiar with this very old drug. As you can see from my
responses to most letters, it is not a drug I recommend for RLS.
The best treatment for RLS is Mirapex or Requip. Most doctors (especially in HMO plans) will not be familiar with or want to
write these drugs even though they are much safer and much more effective
than most of the other drugs used for RLS. You will likely not need
Ultram while on Mirapex or Requip.
If the doctors in your system do not want to write these
drugs, you have a right to demand that they do so and render you the best up
to date treatment. If often takes a little work, but after a referral
or two to a neurologist or sleep specialist you should be able to get the
Sent: Wednesday, April 03, 2002 5:56 PM
Subject: Notriptyline Withdrawal and RLS
I have suffered from RLS intermittently for all of my adult life.
Typically I can manage it by taking ibuprofen or using an analgesic on my
legs. I have taken nortiptyline for anxiety for about 7 years.
Recently I have come off of it and my RLS has kicked in big time. I'm
lucky if I sleep 2 hours a night and that is with the help of Ambien.
Is there a relationship between withdrawing from the nortiptyline and RLS -
there's got to be. How long can I expect this to last. It's been
2 weeks now and I'm exhausted. I went from 50mg a day of nortiptyline. in
the fall to 25 mg. a day. Have been on that dosage since October.
Two weeks ago I decided to go cold turkey and stopped the nortiptyline
completely. I thought since I was on such a low dosage that I wouldn't
have major side effects. The good news is that my anxiety has been
manageable but the RLS is out of control. So, I'm simply curious about
the relationship between withdrawing from the nortiptyline. and my RLS.
Any feedback would be greatly appreciated.
Interesting enough, nortiptyline is a tricyclic
antidepressant that usually worsens RLS. A minority of RLS sufferers
have noted improvement of RLS with this drug. Part of its effect may
be that it is quite sedating, so that if taken alone (or in combination with
a sleeping pill such as Ambien), it will put the patient to sleep (which of
course resolves the RLS).
A better choice is Mirapex or Requip which generally
resolve the RLS symptoms at low dose.
Sent: Friday, April 05, 2002 7:00 PM
Subject: PLMD worsened with treatment
I have had RLS and PLMD for 55 years. Almost 2 years ago I started the lowest
dose of Mirapex, 3 PM and 11 PM. It stopped all symptoms cold. It really was
amazing. Shortly after that I had a total knee replacement as a result of an
injury which tore the tendon and destroyed much of the soft tissue.
Ever since, my knee has been very painful and my orthopedic doctor has allowed
me to take Hydrocodone 5/500 every 4 hours. I have had bone scans, etc.
nothing the matter with the prosthesis.
Recently, I saw my neurologist to discuss the pain of my knee and he
prescribed Nortriptyline 10 mg at bedtime. I am reluctant to take any more
drugs, especially since he said that it might take 2-3 weeks before I noticed
any relief from the pain in my knee.
Now, to make life a bit more interesting my RLS has returned and I asked to
increase the Mirapex from 0.125 in the afternoon to 0.250 but he didn't want
me to start the new drug and also increase the Mirapex at the same time.
I am in a quandary: should I continue to live with the pain in my knee and
stop the RLS or take a chance on reducing the pain while I suffer once again
And, of course, the Hydrocodone is sometimes used to reduce the RLS but,
whenever I stop taking this, my knee hurts like the devil and the RLS is just
What a mess -- especially for someone who hates to take any drugs and has
tried very hard to use alternative therapies such as meditation,
self-hypnosis, relaxation techniques, etc.
I don't expect you to cure me just suggest the best way to handle the RLS, I
don't think I can bear to go back to having only a few hours of sleep a night
after finding out what heaven it is to live without RLS.
It is quite likely that your neurologist prescribed
Nortriptyline to help you sleep at night (it has a sedating side effect) and
for its general benefit of reducing pain (which is common to many of the
tricyclic antidepressants). The tricyclic antidepressants, however,
commonly make RLS worse.
You may want to discuss getting off of Nortriptyline and
perhaps substituting Neurontin which is good for pain syndromes and also has
the benefit of helping RLS.
Sent: Sunday, April 07, 2002 4:49 PM
Subject: Terrible resurgence of RLS
I have had RLS
for more than 10 years. I'm 62 years old. I also suffer from
CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) which I understand can be related to RLS symptoms. I have been
fortunate in that early on 2 Tylenol #4's knocked it out.
Believe me I had a terrible case of it before we landed on Tylenol #4.
Two weeks in the hospital without any sleep. I walked the halls all
night. The nurses thought I was some kind of nut case. I've been
through allot over these past ten or so years, but I won't bore you with my
plight with RLS and CIDP.
The past couple of years I supplemented
Tylenol # 4 with Mirapex
and that worked fine. What I discovered was
that it made Tylenol #4 less effective. However, that was ok since it
controlled the RLS pretty good. I've been pretty lucky.
Now I need
some help big time. In the past couple of months I have gotten worse.
It is almost as bad as when I first got hit with it years ago.
Typically I am up all night in great agony. It's in both my legs; my
feet go numb on thick pins and needles. It is in my arms, also. I now
have it all day and night to varying degrees. I have had to turn into
a recluse because it is so overwhelming.
I have a number or other
neuro-muscular complaints but I don't want to overkill my request.
Something set it off again I'm sure, possibly a medication. I was prescribed
12.5 mg of hydrochlorthiazide for high blood pressure. Could the thiazide
this have kick it off even after I stopped taking it, realizing it might be
the problem. Also, I was switched to Celebrex for arthritis. The
RLS really got worse after starting this medication. I'm going to
stop taking this drug tonight. I also take Diovan, 180 mg.
Are any of these medications, in
your experience the culprit for kicking off this new terrible case of RLS?
your help. I have been a member of the RLS Foundation since
1994. It's a great program.
RLS does get worse as one gets older, so that may
explain some of the reason for your RLS getting more severe (rather than
the effect of Mirapex on Tylenol # 4 or on RLS).
There is no known interaction of RLS with the blood
pressure or arthritis medications that you are taking.
As RLS gets worse, it is often beneficial to increase
the dose of Mirapex. Also, methadone tends to work better for RLS
than codeine (and the Tylenol portion does not help RLS and can thus only
adds the potential for side effects). The combination of the higher
doses of Mirapex and methadone generally can take care of even the most
severe cases of RLS.
Sent: Tuesday, April 09, 2002 5:08 AM
Subject: weight gain
I am 43 years old and have suffered from
RLS since my teens (as have my late father and my sister). For the last 5
years I have taken medication and I wonder if these pills have
anything to do with my weight gain.
Before I took the medication I took a
combination of magnesium/phosphate which helped for a long time when the
symptoms were not so bad.
I have been on Sinemet
but stopped due to
the fact that within 15 minutes of me taken it I was violently sick. I
tried Pergolide and changed now to Madopar 62.5 in the afternoon and Mirapex
My symptoms worsened after I was
diagnosed with cervical cancer and had to have radiotherapy and HRT. According to the doctor the HRT has
nothing to do with my weight gain.
I have been on so many diets and I will
lose 2.5kg and than it stops.
Any ideas on this????
Madeleine from England
Weight gain is usually not associated with Mirapex
(pramipexole). It is likely the weight gain has more to do with
decreased activity since your diagnosis of cervical cancer or some other
Sent: Wednesday, April 10, 2002 4:17 PM
Subject: Permax and Ultram
I have had RLS most of my life. As
far back as I can remember, I was always being chastised for being
"fidgety" and for not being able to sit still. The
symptoms waxed and waned over the years, getting worse when I was
pregnant, then getting better in my 30s and 40s. I am now 59 and
the symptoms have gradually and progressively gotten worse to a point
where I walk around in a fog from lack of sleep most of the time.
My other health problems include hypertension, osteoarthritis, chronic
fatigue syndrome, for which I take atenolol, Accupril, Celebrex,
Zoloft, and occasionally cyclobenzaprine for fibromyalgia.
My doctor recently started me on Permax for the RLS which seems to be
working. I take that twice a day (once in the afternoon and once
about 2 hours before bedtime).
I work as a medical
transcriptionist, so I am sitting at a computer for 8 hours a day
which can be PURE TORTURE when my legs are acting up. I have
tried Sinemet in the past but that did not help. My doctor gave
me a prescription for Ultracet as well. I took 1/2 of 1 pill and
a short time later was nauseated and had vertigo.
I suspect I am
allergic to it but I also had a sinus infection at the time. Now
I am afraid to try it again for fear I will have the same reaction.
Is there an alternative drug to Ultram (I believe I am allergic to
codeine having experienced nausea from it in the past after dental
If Permax is working well, then you might want to
discuss increasing the dose with your doctor in order that it alone will
control your RLS and eliminate the need for other medications. Mirapex and Requip work better than Permax (for most) and tend to have
fewer side effects.
Sent: Sunday, April 14, 2002 6:52 PM
I've just finished reading your site,
fantastic! Please can you give me some advice on Permax which I am
taking for RLS. I am 35 years old and both my sons
have been unfortunate in inheriting this cruel disorder.
I have had RLS for ever. I can recall
being a very young child and it was referred to as growing pains. As I
got older and the symptoms persisted the name changed to rheumatics.
Reading your site, you refer to Mirapex
and Requip but not so much Permax which I am on. Can you please tell
I started on 0.05 x 5 days, then 0.10 x 5
days, then 0.15 x 5 days etc. I have just started taking 0.20 mg per
night. I feel fantastic already, I am so excited to have no symptoms
Do I still follow the prescription and
keep increasing the dose until I reach 1mg or do I stop now at 0.2?
My symptoms were so bad, the neurologist
said I had one of the worst cases he had ever seen, so why have I
responded so quickly? (I am so excited and I feel like I have my
sanity back, but at the same time I feel like a fake!)
Will I always have to take Permax for my
RLS or will this drug make it go away?
Why do you refer to Mirapex and Requip
heaps more than Permax, is there something about this drug that you
My two main side effects at this stage
are: very queasy sick stomach (relieved somewhat by Domperidone 10mg).
Horrible taste in my mouth, almost like
Thanks for your time,
Wellington, New Zealand
I used to prescribe Permax a lot several years ago with
very good results except that it tends to side effects (such as the
nausea that you have experienced and we do not have Domperidone in the
USA). The newer dopamine agonists (Mirapex and Requip) work
somewhat better than Permax and have fewer side effects which is why I
recommend them more often.
If Permax is working well then there is no reason to
considering changing to the newer drugs. We generally try to keep
the dose of any RLS drug at the lowest dose that eliminates the RLS
symptoms. RLS is a life-long condition, so it is likely that you
will need to take medication for life unless a true cure is found for
Sent: Tuesday, April 16, 2002 3:34 PM
I was recently diagnosed with RLS. My doctor
immediately prescribed Quinine just from listening to
my symptoms over the phone. Now I read on the RLS
web-site that this is NOT a good drug to take for RLS.
I was so desperate the first few nights that I took
the medication and it helped. However, while that was
just one week ago, the symptoms have returned and I
have them during the day, as well.
I am going to see my doctor next Tuesday. I read on
the web-site that many doctors do not know enough
about this "syndrome" to prescribe the proper
medication. I would like to know what I need to do to
possible educate him in that short time I am at his
office to enable him to really help me. Because this
hurts and I am losing sleep!
Anything you suggest will be very much appreciated. I
will also read more of the web-site to get more
knowledge on the subject. Oh yeah, one more thing, is
this going to be with me for the rest of my life?
Unfortunately, RLS is usually a life-long problem
(with rare exceptions). It is often difficult to get proper
treatment from most doctors for RLS as the medications used are not
approved for this condition and in addition, most doctors are not very
familiar with them.
The best way to educate your doctor is to bring
information from the internet. Our site has lots of information
but you can obtain even more "official" information from the RLS
Foundation's website. In addition, you can get pamphlets from the
NIH that are meant to educate general doctors about RLS (check out our Links
to other Sleep Sites).
Sent: Tuesday, April 16, 2002 7:29 PM
Subject: Nice to have found this website.
I'm 48 years old and have suffered from RLS
since my early
forties. It was never much of an inconvenience till recently.
September I started taking anti-depressants, and ever since then, it's
gotten so bad my husband and I can't sleep together anymore. I can
still get a pretty good night's sleep, but he says I move around so much
he has to sleep somewhere else. When we do try to sleep together,
feel him getting angry, and it makes me nervous, and then I can't relax
I stopped taking anti-depressants about a week ago, hoping it would
improve my RLS, but so far it hasn't changed it much.
Anyway, it was nice to find this website and to know there are others
out there who are going through the same thing.
Keep up the good work,
Restless in Portland
RLS can be treated quite easily with some of the
newer medications (Requip and Mirapex). It takes care of the RLS
discomfort and will very often relieve the PLMD that causes movement in
bed at night (and may also be responsible for poor sleep quality and
Antidepressant medication of the SSRI class can
worsen or sometimes even help RLS.
Sent: Thursday, April 18, 2002 3:53 PM
Subject: Help! I'm having "withdrawal" symptoms from
I just discovered your web sight. I am so happy to find information to
educate myself about my problem of RLS. I received absolutely no
information from my doctor, other than I do have it. I get the feeling he
is not that well informed about how to treat this. To date I have been
on Sinemet for a few years, and my symptoms were initially controlled with this drug. But gradually they worsened, eventually they began to
return in the middle about 4:00 in the morning. So my doctor tried a
timed release version of Sinemet, which REALLY didn't work.
So back on my original rx. I was put, with an additional dose in the
middle of the night. That worked for a while, but later the symptoms
started earlier in the evening, 7:00 pm or so. Again I took an
additional pill then to get through the evening. Well, after not too
long after going to sleep an hour or so, the symptoms would return and
wake me up about 12:00. Another pill to be able to go back to
sleep was needed. Then within a few weeks of this increase in the
dosage, I would wake up AGAIN in yet another hour at 1:00 or so.
Well, I had no idea why this was happening and was now scared to death
at the amount of medicine I was taking, yet it didn't control the
symptoms. I went to my doctor several different times while this was
developing and got no advise which was of help. The latest
discussion with him was a few days ago and the gist was that I
get off the Sinemet altogether- cold turkey and take 1 Clonazepam
Well, I did that exactly one night & that night was a nightmare to
but it mildly. It was unbelievable, I had never experienced symptoms
so severe and intense like this before, and all the
while I was so groggy and dazed from the Clonazepam, yet could not
even sit down, much less lay down to try to sleep.
I called my doctor first thing next morning, almost hysterical, begging
for help. I sensed they were beginning to view me as a
"crank". I asked if I shouldn't "wean" myself
off the Sinemet gradually to cut down on symptoms, while gradually
replacing it with another medication to lesson the terrible "withdrawal".
My doctor said; "NO! Just stop the Sinemet cold turkey and he would
call in an new rx: Neurontin 300mg, take 1 capsule at bedtime".
The pharmacist said it would take a few weeks for this new drug to
become effective. Needless to say I said:" FORGET IT!" and
took a reduced dose of the Sinemet with the Clonazepam. I'm now trying
to get more informed via your website and feel there should be a way
to lesson the withdrawal I'm experiencing. I feel like I'm going to have
to do this myself, as my doctor doesn't seem to have any experience in
I am trying to get into a sleep disorder center, but the nearest
available appointment is in July. I can't wait that long for
relief. I feel like my doctor is resenting me suggesting to him any
options which I've read on the internet, and I sure don't know
what to do by myself.
Can anyone suggest something I can do while I'm waiting to be
seen in July? Is this a common problem? If so, how does one
withdraw Sinemet with the least amount of problems? Can I cut
back on Sinemet WHILE gradually introducing the Neurontin without
adverse effects? I read you could do that with Permax, would it work
with the Neurontin? Are there better options available out there? I'm
feeling very abandoned and alone with this. Any suggestions?
you in advance for any advise you can offer,
When the dose of Sinemet exceeds 2 of the
25/100 tablets per day, there is a very high likelihood of developing
augmentation (worsening and earlier RLS symptoms) and rebound (RLS
recurs as the dose wears off). This is what has happened to you.
We find that the best drugs to substitute
for Sinemet are Mirapex or Requip (better than the older Permax).
These can be increased as the Sinemet is decreased and this should take
care of your RLS complaints (without causing augmentation or rebound). This
is very simple to do, but most doctors are not familiar with these drugs
and have no idea how to use them for RLS.
There is no benefit from going to a sleep
center unless you can find a doctor there who is able and willing to
treat RLS with either Mirapex or Requip.
Sent: Friday, April 19, 2002 4:35 AM
Subject: Lifelong RLS
I am a 55 year old female who has had RLS for about 10 years.
the inherited type and now I know what my grandfather and aunt meant
they said they had the "fidgets".
I am wondering if there will ever be a time when I do
not have this
disorder. My neurologist says I may in a few years no longer have
symptoms. My "fidgets" aunt is still alive and no longer
suffers with the
I started with Sinemet 18 months ago and it worked
fine until the rebound
got unbearable. Now I take .0125 mg of Mirapex three times a day
symptoms are totally masked. Do you think that I may become used
Mirapex and eventually have to move up to stronger and stronger
The thought of gradually using more and stronger drugs is depressing in
itself. I hate the idea of needing narcotics and opiates just to
relief!!! Facing the rest of my life with mind numbing drugs will
be hard to
do. Please tell me there is a chance that the RLS may go
Thanks for your response and all the help you give so
many on this
Although your aunt no longer suffers from the
"fidgets", she is the exception, not the rule. Most RLS
sufferers get worse as they get older with rare exceptions like your
A very small percentage of people get tolerant to
Mirapex (15%??), but most who increase the dose over time do so because
their RLS disease has worsened with time. The good news is that
despite needing medication, most (if not all) RLS patients can be
controlled with medication and if the drugs are given properly, the side
effects of taking the medication should be negligible (including
Sent: Friday, April 19, 2002 3:15 PM
Subject: RLS worse after a virus?
am 42 years old and have had RLS since I
was a child. However it would only occur when I would try to sleep in
a car, then only very very occasionally. As I got older it would
bother me at night before sleeping, but only maybe once or twice a
year. I don't remember it bothering me at all from my late twenties
until December of 99.
I caught what the doctors called a virus, I
don't know what it was called. It took 5 months to get over and I was
really tired for the last 3 of them. During my recovery, I
started getting numb from just below my chest to my toes, my hands
also went numb. It took months to get my sensation back, although my
feet and the little finger and ring finger on my right hand are still
numb. I also have lost the ability to feel heat in my feet and am
hyper sensitive to cold in both hands and feet in that when I get
cold, my hands and feet feel like they are on fire.
Also since I had
this "virus" I have RLS at least 1 or 2 times a week,
sometimes more. I also have leg twitching in my left leg when I sleep,
or as I am drifting off, the twitches always come in threes, sometimes
very violent (according to my wife). I am glad I found this
web sight because I haven't even had a name for what is bothering me.
I also wake up in the middle of the night, completely wide awake, 6 hrs
of sleep is a distant memory.
Also within the last couple of months I
have been feeling more and more fatigued, particularly in my legs. I
don't know why I sent this other than to share with people that I
don't have to try and describe the feeling of RLS to, or the
frustration of dealing with it. The only thing I have ever done to try
to alleviate it is to tense the muscles from my waist down and hold it
as long as I can, I do this 2 or 3 times.
Thanks for your time,
You do not have to suffer as there are lots of good
RLS medications available. You can take Mirapex or Requip to
prevent the RLS symptoms and PLMD (leg jerking) and sleep much better
and feel rested during the daytime. Ask your doctor for treatment
and end your problems.
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
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