Patient letters on RLS symptoms and remedies- Page 52
If you have questions or wish to describe your symptoms and treatments,
send us email by clicking below.
Sent: Thursday, February 19, 2004 7:46 AM
Subject: RLS Interest
I happened on your site by accident
and it looked interesting. I've have a problem for many years that
sounds identical to many of the folks in the email section. I
thought I was just weird, now it seems there are a lot of people
with this problem.
Some years back I ran across an
article (sorry don't remember where) that discussed this situation.
It suggested that there was a connection between a lack of magnesium
in the body and these various sensations. It recommended a product
you can buy in most drug stores called "Slo-Mag" - it releases
slowly, over time. I tried this and it did in fact help
There used to be times when I would try just about
anything to get a little sleep in the middle of the night. I did
find that by taking the "Slo-Mag" my episodes were greatly reduced
and happen only infrequently now. For those times that still
happened, a very strong vibrator/massage unit applied to my lower
back and extremities for about 15-20 minutes would allow me to get a
little sleep at least.
For what it's worth, I also take 2-3
Melatonin an hour or two before going to bed. I definitely
understand the feelings of complete helplessness, frustration, anger
Good luck to all with this
syndrome. There may very well be other people worse off, but to the
person having one of these episodes - they wouldn't know it.
A Medical Reply
Others have suggested and tried Slo-Mag. It helps
an extremely small minority of RLS sufferers unfortunately.
Melatonin also helps few patients.
Sent: Sunday, February 22, 2004 5:22 PM
I was delighted to find this information on the Internet. The
letters are extremely interesting and I agree with many of the
"cures". The main one is the woman who tried leg wraps. My similar
solution was to use my husband's elastic knee braces. I never go to
bed without one on each calf. They are easier to use than elastic
bandages, which I tried first. It has helped tremendously along with
other methods I've tried through the years. If all else fails, I
raise my legs and massage them toward my heart. I am of the opinion
that blood circulation can be at the heart of the problem.
Tom H. noted that sitting in certain chairs aggravates the RLS I
found this to be true also. A hard back chair seems to be the best
to use for long sitting sessions. A therapist told me to never sit so
that the back of your knees are pressing on the chair seat and
irritating the nerves. Also, do not cross your legs ( a difficult
habit to break, but so important). When in a car I keep a pillow at
my back so my knees are free of the seat.
After reading many articles on RLS, I added a multi-vitamin ( with
18 mg iron), calcium and magnesium to my daily diet. I definitely
feel that the iron helped alleviate my symptoms from nightly
episodes to bi-weekly.
My doctor gave me Elavil but it made me very groggy the next day.
Luckily, I have not needed anything for a couple of weeks now, just
stretching exercises. I know it will return, It always does!
Sent: Wednesday, February 25, 2004 11:30 AM
Subject: Insomnia with Mirapex?
I am taking .25 mg of Mirapex a day for
RLS and have been very pleased with the results. However it
appears the medication may be causing insomnia. I was taking
the medication because RLS wouldn't let me sleep. And now it
appears the side effects of the medication are keeping me awake.
Is there any solution?
A Medical Reply
You may try a smaller dose (.125 mg) and see if that helps the RLS but
does not cause insomnia. Another choice would be to change to Requip
(.25 - .5 mg).
If that does not help, then perhaps a change to Neurontin would take
care of your RLS and resolve your insomnia problem.
Sent: Wednesday, March 03, 2004 12:29 PM
Subject: Drug interactions with Mirapex
I just started taking Mirapex last night, to combat PLMD. I am also
currently taking the other following drugs: Lexapro and Wellbutrin (for
OCD), Klonopin (for GAD), and Elavil (for insomnia.)
Even though a pharmacist has said that there should be no problem with
interactions, would any of these medications be counter-productive to any
beneficial aspects of the Mirapex?
A Medical Reply
There are no interactions amongst your medications but
Lexapro and Elavil have a reasonable chance of worsening RLS.
Sent: Wednesday, March 03, 2004 7:15 PM
Subject: RLS Symptoms getting worse
I have been on Mirapex and Trazodone for sleep for about six months and
thought things were under control. I am an adult athlete and the stress of
competition has always been a problem for me but the last two weeks, the
weakness and shaking in my legs during and after competition has left me
wondering who's body I'm in. Even workouts are becoming difficult to
I'm taking .25 mg of Mirapex at night and have added two doses of .125mg
each during the day to try and stop the weakness and accompanying pain in my
legs. This has not stopped the pain and weakness and I was wondering if I
should increase the dosage.
Any suggestions would be appreciated.
A Medical Reply
That is a very difficult question to answer. Mild exercise
will often improve RLS but vigorous exercise will usually result in worsening
RLS. I have many RLS patients who have had to curtail the level of their
exercise to help control their RLS.
There is a chance that increasing the dose of Mirapex, but only
trial and error can decide that. You should discuss making that change with
Sent: Thursday, March 11, 2004 2:34 PM
Subject: RLS Relief
I started getting RLS in my lower legs (mostly left leg) at age 31. For the
past two years, I have found that doing the following prevents RLS about 90 to
95% of the time:
1. After breakfast: (1) 1000 mcg sublingual B-12 tablet
2. No caffeine after Noon
3. At bedtime: (2) 1000 mcg sublingual B-12 tablets + (1) calcium-magnesium
citrate tablet (250mg calcium citrate, 125mg magnesium citrate combination)
I use a rapid dissolving B-12 that is sold at Trader Joe's called 'Under the
If I am particularly active on a given day, then I might take an extra B-12 at
bedtime (i.e., 3). Hope others find this information helpful.
GGB, 41 year old female from Tucson, AZ
Sent: Thursday, March 11, 2004 12:00 PM
Subject: Concern about Permax for RLS?
My general practitioner was advised by our local
neurologist to try a long list of drug treatments for my RLS. We
tried them all until we came to pergolide. This has better
effect than any of the others but we are growing suspicious that it may have
some contribution to other conditions.
Would you agree that Pergolide is still the best
treatment with less side effects than other drugs. We are
particularly worried about pulmonary fibrosis.
W D R
A Medical Reply
Pergolide (Permax) was used a lot for RLS up until about
5-6 years ago. It does work well for RLS but tends to have more side
effects than the newer dopamine agonists (Mirapex or Requip).
There is a concern about pulmonary fibrosis when using
Permax and you can get more specific info about this on our website.
There is an additional concern about valvular heart
problems occurring with the drug and several case reports have been noted, but
this does not confirm that pergolide is the cause. If you are taking the
medication, then you should have periodic echocardiograms to check your heart
For the above reasons, I do not any longer prescribe
Permax, but rather use the alternative newer and better drugs.
Sent: Wednesday, March 17, 2004 3:59 PM
Subject: Approval of drugs for RLS?
I am a long term sufferer of RLS and my GP has tried pain killers, sleeping
tablets etc. and because I am now becoming seriously debilitated through
lack of sleep, he referred me to a Consultant Neurologist. It had to be a
private referral as there is a two years waiting list in this area.
The consultant recommended Mirapex and Requip and wrote to my GP. My
GP has absolutely refused to prescribe these drugs as they are unlicensed
and he has very little knowledge of them. Where does that leave me? At the
moment I feel at a dead end. I could go back to the Neurologist and ask him
to prescribe but this would have to be a private prescription and I have no
idea what the cost would be.
When are we likely to have a licensed drug for RLS? I feel that at the
moment it is a question of geography. GP's in some areas will prescribe these
drugs whilst others will not.
My suffering is intense but I have limited resources and I
don't know where to go from here,
A Medical Reply
t will be at least a year or so before Mirapex or Requip
gets FDA approved for RLS. It takes a lot of time, money, and studies (I
have been involved in 2 of them) to get the FDA to approve a known drug for
You should be able to find a GP that will prescribe these
drugs even without FDA approval.
Sent: Friday, March 19, 2004 12:22 AM
Subject: Cancer Patient with long history of RLS/PLMD
I was just referred to your site this evening and find it to be incredibly
informative. I am wondering if you can help me with my particular
situation. I have had RLS/PLMD for at least 10 or 15 years or more, and it
seems to have worsened in the last few weeks. I sometimes am up until 3 or
4 a.m. with the creepy crawly feeling most RLS sufferers are very aware of.
I have Multiple Myeloma, a terminal bone marrow/blood disease (cancer),
diagnosed on 9/26/01. I was exposed to Agent Orange while in Korea near the
DMZ in 1968 and 1969 and am rated 190% disabled by the VA and 100% disabled
by Social Security. Part of my rated disabilities with the VA include
Peripheral Neuropathy (PN), likely as a result of taking Thalidomide to
treat the cancer, but possibly due to the Agent Orange exposure. I am a 57
year-old male. Treatments I have received for my cancer include 10
treatments of radiation in late 2001 and another 10 in late 2003 (first to
the L3 site where the initial tumor was, and then to the pelvic area where I
began experiencing pain). Medications and chemo I have been on include VAD,
Thalidomide, Dexamethasone, Medrol, Cytoxan, Prednisone, and now a very
recently FDA-Approved drug, Velcade. Velcade is specifically designed to
treat multiple myeloma, and is known to cause PN in some patients and make
it worse for some who already have it. I also take a monthly infusion of
Zometa (Palmidrone?), a bisphosphonate, to help rebuild the bones that are
destroyed by the multiple myeloma.
I currently ONLY take the Velcade (infused at 1.3 mg/L2 2x/wk for 2wks and
then rest 10 days) and the Zometa (monthly) as treatment for my myeloma.
However, I also take Celexa (40 mg qd), Ativan (1 mg tid), Coumadin (7 mg qd
hs), Neurontin (300mg tid), and Mirapex (.5mg qd, hs). I have been on
Mirapex for at least 4 years and had to increase the dose from .25 to .50
about 6 or 8 months ago, and it seemed to help some. I typically take the
Mirapex and the Coumadin about an hour or so before retiring. I only started
taking the Neurontin to any extent in the last 6 months as my neuropathy
increased. I also have severe sleep apnea (93 awakenings per hour) and must
use a Bi-PAP machine every night or else the quality of the sleep I get is
so poor that I am a zombie the entire next day.
By way of vitamins/supplements, I take Feosol (Iron) (65mg qd), Super
B-Complex (one tab qd), Vitamin E (400 IU qd), Multi Vitamin (from Costco) -
(1 tab qd), Alpha Lipoic Acid (2-100mg caps tid), Folic Acid (800mg qd),
Selenium (200mg qd), Coral Calcium (1000mg caps tid), Vitamin B-6 (200mg cap
qd, then 50 mg cap later in day), L-Carnitine (500mg tab qd), L-Glutamine
(2-500mg tabs, bid), Fish Oil (1000mg cap - qd h.s), and Potassium (K-Dur)
(20meq tab qd). Many of the vitamins and supplements are recommended to
treat Peripheral Neuropathy by Dr. Richardson at the Dana Farber Cancer
Institute (DFCI), and they do seem to help. He includes the Neurontin in
the recommended regimen.
So, given this rather exhaustive medical history/medication listing, I am
wondering if you think there might be some factors that are interacting to
increase my RLS. Particularly (possibly) the Velcade, which I just started
on 1/20/04, and which seems to be knocking the heck out of my multiple
myeloma, which it the MAJOR MONSTER I am fighting against to stay alive.
Is there a relationship between PN and RLS? Should I take some Mirapex a
bit earlier in the day, as some have mentioned? I do begin to get RLS
around 7 or 8 p.m., but it is worst by the time I retire around 11 p.m.
Should I try Requip by itself, or combine it in some fashion with the
Mirapex? Should I occasionally take a med holiday from the Mirapex?
Oh, by the way, I have also had a chronic dry (non productive) cough for the
last 14 months, and it sometimes becomes so violent that I literally lose
consciousness. I've had no luck getting it diagnosed and treated after
seeing a pulmonologist, neurologist, ENT, gastroenterologist, and an
allergist. They state I may have mild Acid Reflux! However, the allergist
saw me when I was taking steroids to activate the other cancer medicine, and
he said the tests would not be valid while on steroids. I have been off
them for two months now, and hope to have the tests done in the next week or
so. In the mean time, I have taken a slew of inhalers and cough syrups to
try to minimize the coughing. I doubt this contributes to the RLS, but felt
I'd better mention it just in case.
So, again, with all that, can you help me? I'd sure like to get rid of
this, or at least get it to a point where it is much more under control.
With desperate hope,
A Medical Reply
If Mirapex is working, then is no reason to change to
Requip which is very similar nor do we usually combine those two drugs
together. Generally, I advise my patients to take their Mirapex 1-2 hours
before bed and also 1-2 hours before times in the day when they will be having
RLS problems (such as at 5-6 pm to cover your 7-8 pm RLS problems).
There is nothing obvious that I can see that may be causing
worsening of your RLS (you can double check the list of drugs on our website
that worsen RLS) but RLS can worsen for many reasons (such as increased
stress) or often for no reason what so ever (it can be a very perplexing
disease at times!).
Sent: Friday, March 19, 2004 10:29 AM
Subject: Allergy relief
I have been taking Mirapex (.125 mg) nightly for
about three months now for RLS. I have several questions: At bedtime, once
in a while I don't feel any symptoms like tingling. Should I continue to
take the Mirapex anyway? The symptoms definitely return the next night.
How does one know if their RLS condition
might be symptomatic of some other condition like Multiple Sclerosis? Also, allergy season is here with the
juniper trees doing their pollen thing. What should I take to get relief
from the hay fever I am experiencing? You make a point
to avoid Benadryl and histamine containing medications? Is Claritin to be
Thank you for any help you can offer,
A Medical Reply
The problem with treating RLS is that once symptoms occur
they are much more difficult to relieve. Taking a small dose of Mirapex (as
you are doing) 1-2 hours before your symptoms normally occur can often prevent
RLS symptoms that might need even more medication to be relieved.
As you cannot predict which nights you will have your RLS
problems, it is likely more prudent to use the medication on a preventative
basis every night. If you don't mind suffering with RLS symptoms when not
taking the medication, then you can try using it on an as needed basis.
Claritin is tolerated by more than 50% of RLS sufferers,
but Allegra and Clarinex are equally well tolerated and are more potent
antihistamines. A better approach is to use a steroid nasal spray (Nasonex,
Flonase, Rhinocort, Nasacort, etc.) starting about 2 weeks before your allergy
season starts until the end of the season. This is very safe treatment that
avoids the issue of antihistamines completely.
RLS is not usually a result of other conditions. It may be
made worsen by iron deficiency (and all RLS patients should have a serum
ferritin level checked), but only very few other extremely obvious conditions
such as kidney failure result in RLS problems.
Sunday, March 21, 2004 2:24 AM
RLS in arms?
I was wondering if it is possible to have RLS but in your arms??? I get
the same type of feelings described on this website, only in my arms, not
It can occur in your arms, but most RLS sufferers usually
start with the feelings in their legs and later have it work up into their
Sent: Monday, March 22, 2004 3:17 PM
Subject: There's no relief!
I am taking clonazepam but I an awake in the
middle of the night kicking my legs and can't get back to sleep, also during
the day my legs ache no stop have to keep moving or taking bath after bath
I'm miserable. I just go of off Percocet which gave me much relief but was
taking it for another reason such as back pain. Now I'm thinking I really need
to be on just to live a more normal life
Thanks for listening to me,
A Medical Reply
If you are having problems with PLMD (leg jerks at night)
then Mirapex or Requip are better drugs. Clonazepam is a very addictive drug
that can cause other problems with long term use.
Sent: Wednesday, March 24, 2004 6:24 PM
Subject: Hemochromatosis and RLS?
I have searched the web and cannot find any information regarding a
connection between hemochromatosis and RSL. Hemochromatosis is caused by
overload of iron in the blood and primarily affects people of Northern
European and Celtic origin.
My question is if you know of any connection between RLS and it's prevalence
in a particular ethnic group?
A Medical Reply
There is no known connection with hemochromatosis. There
is a connection with the opposite problem of iron deficiency.
Sent: Sunday, March 28, 2004 8:53 PM
Subject: RLS better with unwrapped bar of soap?
I have been afflicted with RLS since in my teens, nothing has seemed to give
me lasting relief until the latest thing I have tried (we'll try almost
anything, right)? Put an unwrapped bar of soap under your bottom sheet near
your legs lie. Last night I slept from 11PM until 6:30 this morning without a
twitch for the first time in years! I had to pass it along in the hopes that it
might give another person some relief.
Lola I. S.
Sent: Thursday, April 01, 2004 10:55 AM
Subject: Grape seed extract or fish oil for RLS?
I have had RLS since I was a child, but didn't know what it was until a
couple of years ago. My symptoms are alleviated only with the use of
Percocet. Although I am also on Neurontin, 300 mg two three times a day
with no relief, or very little. Percocet 7.5 so far is the only relief I
get for a couple of hours or more at a time.
I have a friend who also has RLS and she uses grape seed extract (pill
form) I tried to find it but so far have had no luck finding it. She is
going to give me a weeks supply to see if it does any good, I will try it.
Have you ever heard of this remedy. She also takes fish oil capsules along
with it. Her herbalist is the one who recommended this treatment.
A Medical Reply
There is no known benefit from grape seed extract
or fish oil.
Ask your doctor to try Mirapex or Requip which may
have a better chance of relieving your RLS symptoms.
Sent: Saturday, April 03, 2004 10:18 AM
Subject: Great News for Chiropractic Treatment for RLS!!!!
Yes, for years I have struggled with RLS and found temporary relief
in various forms ,only to be devastated when it no longer was effective.
I went to my chiropractor for a pinched nerve in my lower back and
mentioned the RLS problem.
Well.... he considered it a challenge and after one adjustment I had a
good nights sleep .
After three treatments a week for one month and
walking 2 or 3 times a week. I am now free of ALL symptoms and off of the
Neurontin (600mgs) , which was no longer working. Please,
pass this on to everyone and if it can help just one more person, it will make
me happy. My doctor is going to document this and send it on
to whomever is interested.
To me it's a miracle !!!!
A Medical Reply
Chiropractic treatment has helped a very small minority of
RLS sufferers. There are a few who have had excellent relief from RLS
symptoms with chiropractic adjustments, however most get either no benefit or
do not sustain the improvement.
Let us know how well this works for you in the future.
Sent: Saturday, April 03, 2004 9:21 PM
Subject: Mirapex Keeping Me Awake?
I tried taking a low dose (1mg tablet each night) of Mirapex
after my sleep study recently confirmed that I do have RLS. However,
it seemed to keep me up off and on all night! I took it for only 2 or
3 days and then discontinued it because I already have severe insomnia that
I take Ambien for.
Is Mirapex likely to cause difficulty sleeping in some
people? Would it help to take it during the day? Also, does Neurontin
help some people with RLS?
A Medical Reply
Mirapex is known to cause insomnia. Strangely enough, it
can cause daytime sleepiness in other patients. Normally, patients start at a
much smaller dose, .125 mg (which is 1/8 of a mg) and work up to a higher dose
only if necessary. Sleep studies do not show RLS but rather PLMD (leg
jerking). If you do have the wake symptoms of RLS (you have to be awake to
feel the RLS symptoms), then you usually want to take Mirapex 1-2 hours before
Neurontin works reasonably well for RLS and PLMD and often
causes increased sleepiness.
Sent: Wednesday, April 07, 2004 10:29 AM
My son with RLS in Michigan
I had written you previously about my son (Mack) and his
RLS. All the Parkinson's disease drugs he had bad side effects. His doctor now has him
on Xanax to help him sleep and Vicodin for the RLS. It has helped. He
still has bad days.
His friends have told him that marijuana may help and
I'm afraid he may try it on those bad days when the Vicodin isn't working.
I don't want him to go that route. Can marijuana hurt him if he does that
with the medicine he's on?
He's only doing 2 Vicodin a day and one
Wouldn't it be better if he tried 2-3 Vicodin with one Xanax per day, in
hopes of getting this under control? He knows these do help.
A Medical Reply
Vicodin at 2 tablets per day is a relatively safe dose.
With higher doses the risk of addiction/tolerance increases significantly.
Xanax also can be an addictive drug if taken daily. Drug holidays may be
helpful to avoid addiction/tolerance or changing to a non-addicting sleeping
pill such as Ambien may be another alternative.
Marijuana (from reports that I have received from RLS
sufferers who have tried it) is a very potent treatment for RLS. Most find
that 1-3 puffs will resolve their RLS symptoms within seconds or minutes. The
drug is however, illegal and smoking it has other health risks.
There are other options such using Ultram (tramadol, a
non-narcotic pain killer) instead of Vicodin or to alternate with Vicodin (he
can alternate every 3-4 days). Neurontin (an anti-seizure drug) is another
choice for RLS and is not addicting.
Sent: Friday, April 09, 2004 8:53 PM
Subject: Restless Legs bothering my husband?
I don't have any pain or anything like that associated
with this problem, except that it seems to constantly wake my husband.
I can remember my mother telling me when I was a child to keep my feet
still, and even now, I seem to move them a lot, mostly unconsciously.
But it has not been a problem until recently and my husband is really
complaining about it.
I seldom drink alcohol and have about 3 cups of coffee
a day and very little soda or tea. Do you have any suggestions?
I haven't spoken with my doctor about it as I didn't really consider to be a
problem until just recently. He keeps waking me up and telling me
what's going on with my feet. I'm 49 years old.
Thanks for any advice you can provide,
A Medical Reply
It sounds like you may have PLMD. If you are well rested during
the day then it is not bothering you and you need no treatment.
As far as helping your husband, the simplest and safest (no
medications!) way to resolve your (actually his) problem is to get twin beds
and move them apart by a couple of inches when going to sleep. This should
keep your kicking legs away from your husband.
Sent: Monday, April 12, 2004 3:05 PM
Subject: Anticonvulsant medications and RLS?
I recently discovered that I suffer from RLS.
I am a 69 year old male. My doctor prescribed hydrocodone (5/500 mg) at bed time
initially, which helps some but not enough.
I understand that Neurontin, an
anticonvulsant, is quite popular in treating the symptoms of RLS. I am
somewhat surprised that Topamax (topiramate) is not mentioned here among the
anticonvulsants. I heard some anecdotal stories where one 25 mg tablet a
night of Topamax helped a RLS patient considerably.
I would appreciate your comment,
Frank J. H.
A Medical Reply
Most of the newer anticonvulsant medications have had some
anecdotal success with RLS. Neurontin is the oldest (of the newer ones) and
has been used and studied the most extensively which is why it gets most of
the press in RLS publications.
Most RLS specialists will use the anticonvulsant of their
choice or switch around until they find the one that works most effectively
for any individual patient with the least amount of side effects (commonly,
daytime sleepiness with most of them).
Requip or Mirapex are currently the most effective RLS
medications and are generally used before narcotics or anticonvulsant
medications by most (by not all) RLS specialists.
Sent: Wednesday, April 14, 2004 7:41 PM
Subject: Neurontin Causing Insomnia??
I have tried 100 mg. to 300 mg. of Neurontin at night to
help with my RLS. I know anything is possible....but have you heard
others say that Neurontin worsens insomnia? I have had a terrible time
sleeping since I started it even in combination with Ambien.
Do you think taking Ambien and a low dose (.125mg.)
of Mirapex together is something else that may be worth a try?
Thanks for your help,
A Medical Reply
As you have stated, the commonest side effect and problem
with Neurontin (which often limits its use) is sleepiness. But everyone is
different so if you are experiencing insomnia then your body clearly responds
Most (but not all) RLS specialists prefer Mirapex over
Neurontin and it usually works well with Ambien.
Sent: Friday, April 16, 2004 8:26 PM
Subject: RLS not responding to Mirapex?
I live in a rural part of North Carolina and had
trouble finding a physician who knew about RLS. Once I did, we tried
Klonopin (clonazepam) to no avail. We tried Mirapex beginning at 0.25 mg once at night
in mid 2001 and have increased dosage to 6.0 mg at night. This is above the
recommended max so I have asked to begin a different therapy.
At this point
my physician seemed unsure of what to do. He chose to begin backing down the
Mirapex and beginning with pergolide at 0.25. I know it has been only a
couple of days but this doesn't seem to be working.
Any suggestions on what
to follow a long use of Mirapex with . The pain an lack of sleep is again
KFT in NC
A Medical Reply
It is unlikely that dopamine agonists (Mirapex, Requip or
pergolide) will help you at this point. Other drugs to consider would be
Neurontin and pain killers.
For moderate to severe RLS, pain killers such as narcotics
(Vicodin, methadone) or Ultram (the only non-narcotic pain killer) are usually
very effective and can give needed relief of symptoms. Neurontin may be
helpful to keep the dose of the pain killers lower, if it does not cause
unwanted side effects (usually daytime sleepiness). If managed correctly, the
pain killers can be both effective and safe.
You might even consider (sometime in the future) adding
Requip to your regimen to see if a smaller dose may also decrease the need for
pain killer medication.
Sent: Sunday, April 18, 2004 4:04 PM
newly diagnosed with RLS
have just recently been diagnosed with RLS. I have had cramping in my
legs as long as I can remember, but I have never had this "crawling"
sensation until about 1month ago. It started first just at night, but
now I get that sensation even when sitting during the day. Only when I
stand or walk does it go away. A month before that I was
experiencing nightly cramps.
Upon diagnosis, my doctor
prescribed Sinemet. I took it thinking everything would be OK, only to
have the worst night yet. The crawling sensation went away for about
1/2 hour and then came right back only worse than before. I tried
taking a second one to see if it would do any good, but the same thing
occurred. I was also feeling wide awake the whole night.
I have never had a problem with
insomnia, so this whole experience is completely new and very disturbing.
I am constantly trying to convince myself that nothing "bigger" is going on
here - that it is, in fact , RLS.
My question to you is, is it worth it to try Mirapex? Or will I most likely
experience the same thing? Also, is it pretty common for RLS to come on so
quickly and get so much worse so fast?
South Pasadena, California
A Medical Reply
RLS usually gets worse over years
but can come on suddenly (usually after some trauma, new medication or new
medical condition). Your reaction to Sinemet is somewhat unusual as it
takes weeks or months to get problems with Sinemet (we don't recommend using
Mirapex is somewhat different than Sinemet but
they both work through the body's dopamine system, so it is possible that it
might cause problems. It still may be worth trying Mirapex.
Sent: Monday, April 19, 2004 6:18 AM
Subject: Q Vel for RLS?
I have suffered with RLS for over 30 years and it seems to be getting
worse. Some years ago, I took an over the counter drug called Q Vel which
helped instantly for RLS. I purchased it at Rite Aid. I cannot find this
drug any longer nor do I have an empty bottle so that I could see what drug
company manufactured them. Did you ever hear of this drug or know
anything about it. It would certainly help all RLS sufferers
tremendously. I am desperate to find out where to get this medication or
who manufactured it.
A Medical Reply
Q Vel is quinine. This helps an extremely small minority of
RLS sufferers so is generally not recommended for this disorder. It is a good
treatment for leg cramps (which is why it is given very often as initial
treatment for RLS and as stated does not generally help).
Quinine is no longer available over the counter and must be
obtained with a doctor's prescription. It does have side effects so it should
be taken under a doctor's supervision.
Sent: Tuesday, April 20, 2004 12:14 AM
Subject: RLS and disability payments?
I have had the RLS syndrome since a very young age. Probably around 21.
Now I am 42. Last few years the pain has been very excruciating and I am
to sleep. I do not get to sleep more than 3 to 4 hours. My work is
impacted severely and I am unable to balance my daily routine and
relationships with family and friends. I have been on almost all the
medicines and right now take Prozac 20mg a day. I am unable to take up any
projects as I am a business consultant. I am just physically exhausted and
I am tired and exhausted and I would like to seek your advice. I have
disability insurance. Should I go ahead and file for disability insurance
claim. Are there any who have done so and what are the chances. Is RLS
considered a reason for applying for disability.
Please advice and I will greatly appreciate it.
God Bless you.
A Medical Reply
RLS may not be listed amongst the diseases that cause
disability but any disease that prevents you from working would qualify you
for disability. It may be more difficult as most disability programs and
examiners will not be familiar with RLS but with persistence, you should be
able to prevail.
The other side of this problem is that the vast majority of
RLS sufferers should be able to get relief and be able to work. You may have
to see a doctor who has more expertise in RLS to get help. Even though you
have been on most RLS medications, sometimes it takes different doses and
combinations of medications taken together to get relief.
Don't give up yet!
Sent: Tuesday, April 20, 2004 2:06 PM
Subject: Diagnosing RLS in infants?
I am concerned about my 10 month old daughter. How
early can RLS present signs and symptoms? My daughter constantly
tightens her legs and buttocks and sleeps for only short periods at a time.
She is jumpy and restless all night and day long. We are taking
her for a sleep study on 04/30/04.
Do you think she could be showing signs of this
syndrome at such a young age?
A Medical Reply
It is very difficult (to impossible) to determine
a diagnosis of RLS at that early age. It is possible to diagnose RLS once the
child can articulate well enough to describe the symptoms that are causing the
There are no tests to diagnose RLS. It is done
from the clinical story so verbal communication is essential. Also, there are
no good medical studies to show us how RLS manifests in very young children.
Sent: Tuesday, April 20, 2004 10:51 PM
Subject: Iron and blood and RLS?
I give blood about 4 times a year. Could the lack of iron replacement
cause RLS. I eat quite a bit of red meat so I feel I get enough.
Another thing I noticed is that when it rains I sleep more soundly.
Maybe we should all move up to Seattle...
A Medical Reply
RLS patients as a rule (always exceptions) should not give
blood. The best way to monitor how critical this is would be to check your
serum ferritin levels as this is the most sensitive test for iron stores.
Sent: Wednesday, April 21, 2004 4:35 PM
Subject: Addicted to Ultram and how to get off?
I have had RLS for many years, and have had luck
with Ultram. However, I wanted to try getting off of it for awhile, as with
most drugs it isn't working as well now.
I was off of it for about 36 hours, and I
honestly believe I was having withdrawal symptoms. I had a horrible episode
of RLS last night, couldn't sleep at all and naturally I tried a sleeping
pill, which appeared to make everything worse. So in order to avoid another
"night of madness" I took 2 Ultram and within an hour, the sweats stopped,
and I could feel the RLS leveling off. (Even had diarrhea).
It scares me to
think that I can be addicted to that stuff. Is there a safe way to come off
of Ultram, and not be beset with horrendous RLS...I have been placed on
Lithium by a neurologist but that did not work. I have never had such
severe symptoms when coming off of narcotic like hydrocodone, which I no
longer take for the same fear of becoming addicted or having it not work when
I really need it for pain.
So right now all I am taking is Ultram and Bextra. I take about 4 to 6 Ultram per day, and have been taking it for
about a year. Would welcome a suggestion. My neurologist really just isn't
responsive to RLS and I am finding another doctor, but meanwhile....I had
RLS bad enough last night, I really think a person could commit suicide over
A Medical Reply
First of all, lithium has no role in treating RLS and
indicates that the doctor has little expertise with this disorder. You
should definitely see a physician with more experience and interest in
Ultram has a very low addictive potential but cases have
been reported (none that I know of yet with RLS). After taking 4-6 per
day, it is possible that addiction and withdrawal may have occurred, but I am
not sure that is what happened to you. It is more likely that stopping
the Ultram (without replacing it with another medication to control RLS) just
sent your RLS into hyperdrive and all the other physical complaints were as a
result of the acute severe RLS.
Most often, when addiction occurs, tolerance to the drug
occurs with it. This would mean that you would have been increasing the
dose of Ultram to get the same effect on your RLS. As you do not
indicate that this is what happened, addiction is much less likely.
Mirapex and Requip (both Parkinson's disease drugs) are
generally considered the first drugs to use for significant RLS and the pain
killer drugs like Ultram or narcotics should be reserved for when these drugs
are not working well. Using the pain killer drugs on an as needed basis
(when there are breakthrough episodes of RLS not controlled by Mirapex or
Requip) will generally eliminate any concern about addiction.
Sent: Wednesday, April 21, 2004 7:57 PM
An RLS sufferer on Requip.
I am a 53 year old women, thru a sleep study found out that I have
(PLM index 64.5/hr.). I was lucky to get 2 - 3 hours, not
consecutive, a night. My sleep doctor had prescribed
Sinemet (Carbidopa/LevoDopa) 1 to 2 tabs 1 hour before bedtime. This
helped for about 4 months, not walking up as much but soon I was back
to the same awakenings.
I returned to the doctor, he took me off of
Sinemet and prescribed Requip, .25 mg, 1 hour before bedtime. It seems
to help a little but I still wake up 2 to 3 times in the night.
Sometimes my legs are painful and other times not. But when I wake up
my mind doesn't want to go to sleep and I have a hard time falling
asleep again. I have increased the dosage to 2 Requip (.5 mg) 1 hour
before bedtime, it doesn't seem to make a difference.
I wanted to know how much can I increase the dosage of Requip,
your website medical information states .25 to 1.5 mg per day. Can I
slowly increase before bedtime 1.5 mg. or would there be side effects.
I also find when I take 2 tabs of Acetaminophen, extra strength,
it helps me sleep better. Or can you suggest a sleeping pill that
isn't addictive that I could take to sleep thru the night but not make
you tried in the morning, as I need to get up for work in the morning.
I would like to thank you for this informative website and to
people who have written in and shared there stories.
Pickering, Ontario, Canada
A Medical Reply
If it is not the PLMD or pain in your legs that mostly keep
you up at night, then increasing the Requip will not help. In fact, Requip
can cause insomnia so it may be part of the problem.
In the USA we have Ambien which has yet not shown to be
addictive. In Canada, you have Imovane which may have less (if any) addictive
potential. You can use one of the more common benzodiazepine pills for
sleeping (the shorter acting ones are better so that you do not have
sleepiness the next day) and they are safe if you take them on an intermittent
basis (every other day or take frequent drug holidays).
Sent: Thursday, April 22, 2004 11:03 PM
Subject: Carafate and Mirapex
I take 1.25 mg of Mirapex and 2 mg. of
Ativan at HS for my RLS. RLS is
diagnosed as "severe". I have developed significant reflux disease. They
prescribed Protonix for the reflux with no ill side effects. Now they added
Carafate 1 tablespoon 4x a day. After only being on it one day and shortly
after the 4th dose I noticed a resurgence of my RLS symptoms.
gastroenterologist, pharmacist and sleep physician tell me it won't interfere
with the absorption of my meds. I took the Carafate 2 hours prior to my
Mirapex. My question is does it affect the metabolism of my drugs for
RLS? After about 5 hours the symptoms abated to just a tingling in the
A Medical Reply
Carafate is a drug that works by coating the esophagus and
stomach and thus can bind drugs before they get absorbed (it does not affect
the metabolism, but prevents the drug from ever getting into the body).
Although Mirapex is not listed as one of the drugs that is affected anything
is possible especially if you notice a change since taking carafate.
You can try taking Mirapex with and without carafate and if
you can reproduce your problem only when taking it, then you do not need any
more proof that carafate is causing problems with Mirapex. Not everyone's
body follows what is written in the textbooks.
Sent: Friday, April 23, 2004 12:09 PM
Subject: Difference in narcotics?
My RLS is getting worse, Mirapex is not working as well, so sleep doc and I
decided to go the narcotic route for awhile. Working ok so far, but I notice
you recommend hydrocodone (Vicodin) in your replies. My doc gave me
Oxycodone. Is there a difference between them as related to RLS?
Also, is it time to re-evaluate the side effect profile of Mirapex? I admit
it was a life saver for me for 2 to 3 years, but i am now noticing stuff with
long term use. Between your site and others, many people have complained
about weight gain, and i also have gained about 60 pounds in time I've been
Even though it is not listed as a side effect in its profile,
haven't enough people related this so that it could be accepted it may be true
for good number of users? Also, since it has been available now for around 5
years, i notice more and more issues with Mirapex concerning breathing
difficulties, skin problems, exacerbation of OCD, etc.
I am not trying to put a
damper on Mirapex as it does its job and we all know what joy the relief of
RLS symptoms brings. I am just asking if maybe we should be more aware that it
isn't as innocuous as it has been made out to be. I know PD patients take a
lot higher dosage, but does that really mean anything. They have
and so its effect on them at higher dosages is not comparable to other uses
What are your thoughts? Are you noticing an increase in Mirapex
My thanks for a valuable and informative site,
A Medical Reply
Vicodin is similar to Percodan (oxycodone) except that
oxycodone is about 20-30% stronger as a narcotic which means it will work a
little better (when comparing mg to mg) than Vicodin. The other problem with
oxycodone is that it is more of a controlled substance than Vicodin and in
most states needs a triplicate prescription.
I have noticed some side effects with Mirapex but mostly
the ones listed. I have many patients on Mirapex (and most all the other RLS
drugs) and have not noticed problems such as weight gain, breathing problems
(I am also a lung specialist) or skin problems. One has to be careful when
looking at message boards and internet sites for side effects of drugs as
there are many more posts by people who have had trouble which skews one's
view of the drug.
Every drug has negative potentials which especially become
more relevant when the drug is taken for many years. We are still early in
the learning process for drugs such as Mirapex and Requip but you can rest
assured that if significant side effects are occurring they will get reported
to the FDA (this is mandatory for all doctors) and then be put in the product
Sent: Friday, April 23, 2004 5:42 PM
Mirapex and antidepressants?
I was just prescribed Mirapex for my RLS. I
have been taking Klonopin for the last couple of years but felt too drugged
in the morning. I also have sleep apnea and use a CPAP machine. My real
question is I want to know if it is ok to take Zoloft for my depression and
Mirapex along with it. I take 150 mg of Zoloft each day. I was prescribed
I have had RLS since I was a little kid . the only way
could sleep was to rock myself. I find myself still doing that about twice
a night so I hope Mirapex works but just am concerned about the Zoloft.
A Medical Reply
There is no interaction between Zoloft and Mirapex. The
only problem is that Zoloft usually worsens RLS (although a minority of RLS
sufferers may actually get better with the drug. If you really need the drug
for anxiety/depression and you have not noticed significant worsening of your
RLS then there should be no reason not to continue with Zoloft.
Mirapex often needs to be increased slowly until your RLS
symptoms are relieved.
Sent: Saturday, April 24, 2004 11:50 AM
Subject: RLS & back pain?
I have been diagnosed with RLS. One
thing that concerns me is that I have a lot of back pain also. Do you know
of any one else that has this symptom? I bothers me more than the RLS.
A Medical Reply
The two problems are unrelated. As back pain is very
common, many RLS patients will have both problems but that is simply the
overlap of two common medical conditions.
Sent: Saturday, April 24, 2004 5:43 PM
Subject: Taking Mirapex along with Klonopin?
I took my Mirapex last night for the first time
and my RLS was fine. However, I have been taking Klonopin for about a year. My
doctor told me to stop Klonopin and start Mirapex. I didn't sleep a wink all
night, at least it didn't feel like it.
I just was wondering if I should
give it a couple of nights or is it ok to take my Klonopin along with my
Mirapex. Like I said, the Mirapex helped my RLS but I think the lack of
Klonopin made my sleep bad. Are the 2 drugs ok to take with each other.
A Medical Reply
Klonopin should generally be weaned off over a week or
two. Ambien is a good choice to use if you need some temporary help to fall
asleep while getting used to being off of Klonopin.
Klonopin is a very addictive drug and should be used very
carefully (if at all) for RLS. You are better off without the drug.
Sent: Tuesday, April 27, 2004 9:51 PM
RLS worse with menstrual cycle?
I haven't had RLS in quite a while, but wanted to know if any other woman
might have experienced it as I did, which was mostly around the menstrual
cycle. I also suffered miserably with migraines at the same time. I used
to take Fiorinol, but my doctor wanted me off of it after so many years
(about 18 years!).
Then a study came out of one of the Southern California
universities, which made a link of taking several vitamins (potassium,
magnesium, b12, and calcium) for the migraines. After about two months
time, I stopped having the migraines around the menstrual cycle (or much
lighter ones) and I have stopped my RLS. Of course, my cycle brought with
it a deep craving for carbs, cheese, chocolate and caffeine, which according
to what I have read, may have been the trigger for RLS.
What do you think?
A Medical Reply
RLS getting worse with menses is not unusual. Getting
better with vitamins and minerals is more unusual. Not enough is known about
the cause of RLS so it is difficult to explain why the hormones at menses
would worsen RLS and why it got better with your treatment.
Sent: Wednesday, April 28, 2004 10:31 AM
Subject: RLS worse with hot weather?
I have been taking Mirapex for about 4 years now and have
had to increase my dosage about 4 different times which has caused me great
anxiety. One of the things I have noticed is that when we go on holidays to a
hot climate (usually go in the spring) my RLS worsens and I have to increase
Could you please tell me what you know about weather
triggers and if I could go back to my previous dosage in the fall when the
climate changes to a more temperate climate.
Thank you for your time
A Medical Reply
Weather seems to affect certain RLS sufferers. Some are
worse in the summer and others in the winter. It is very difficult to figure
this out or why there would be any association at all.
Sent: Thursday, April 29, 2004 11:23 AM
Subject: PLMD and Vitamin E?
I am a 61 year old woman and my doctor has told
me I have PLMD. This was discovered in a sleep apnea test and the doctor
says in this test my legs move 54 time in one hour. I have been extremely tired for 3 years and wake
up many times a night and never feel rested. I have been to many doctors and
was told by the last doctor to try the sleep apnea test. The doctor first
set me up on a sleep apnea machine which I have used for 3 month with no
He now has told me that I should take a large
dose of vitamin E which may help the PLMD. He said to take 800 iu of
vitamin E a day for one week then got to 1600 iu per day for a month then
return for an evaluation. He also said that if this doesn't work there are
other drugs that can be used.
My question is does vitamin E actually help and
if so what is the probability of it helping me or anyone else? Also are the other drugs he mentioned dangerous?
I was concerned when he told me that you can use a drug that is currently
used for Parkinson.
Thank you in advance,
Linda ( very tired)
A Medical Reply
Vitamin E has absolutely no role in RLS/PLMD. There are no
reports in the medical literature concerning that connection (showing that it
does or does not help RLS). I have not even heard of any anecdotal reports of
Vitamin E and RLS/PLMD. Therefore, I have no idea why your doctor chose to advise
you to take Vitamin E for PLMD or what dose should be used.
The Parkinson's disease drugs (Mirapex or Requip) are
indeed the best drugs for RLS/PLMD. As with most drugs there are some possible
side effects, but most do very well with these drugs. It is certainly worth
trying these drugs for their effectiveness in RLS compared with the small
chance of adverse effects.
You can bring your doctor the section from our website on
how to use these drugs so that he can properly prescribe them for you.
Sent: Friday, April 30, 2004 1:02 AM
Subject: RLS in Australia?
I live in Australia where some drugs are not available. I
have had RLS for many years. I took Sinemet from 1996 until last Christmas
but the augmentation had become a problem. I had reached 300 mg/day dose. I
switched to Permax which gave me great sleep but I quickly developed what is
probably an allergic reaction. It started with a severe stuffy nose (I am
prone to this) but also there was an eye irritation which got very bad,
forcing me to stop the Permax and go back to Sinemet which is just not good
enough anymore. Even half a tablet of Permax to assist the Sinemet caused
the allergic reaction again.
Requip and Mirapex are not marketed in Australia
otherwise I would try Mirapex, although it is likely to cause a severe
stuffy nose too.
I obtained a trial pack of Neurontin from my
doctor but even at 900 mg it did not stop the RLS. My doctor is helpful but knows very little about
RLS. We do not have many doctors here who understand it.
Would you like to suggest the other medications
that I should try next?
Richard L., age 66 years ,
A Medical Reply
There are other dopamine drugs such as Parlodel which may
be helpful for RLS if Mirapex and Requip are not available. If the dopamine
drugs available do not help you then alternating a narcotic (such as Vicodin)
with Ultram may be very helpful.
Sent: Sunday, May 02, 2004 4:21 PM
Subject: RLS worse with cholesterol or hormone medications?
I have written to you in the past and would like to seek
further advice (you were very helpful the last time that I wrote).
I am presently taking Mirapex for my restless legs (1 mg. at
bedtime in conjunction with Neurontin (1500 mg.).
A couple of months ago I noticed that I was itching terribly,
especially at bedtime. I saw my neurologist, and he wasn't really
sure what could cause the itching, but said that it had to be
something that changed within the last couple of months. I got to
thinking about all of the meds that I am taking, and the only thing
that had changed was that I went from the estrogen-progesterone
CombiPatch to FemHrt. In addition, I take Lipitor, and I am aware
that it can cause liver problems. (In the past, my liver enzymes have
been very slightly elevated).
I spoke with my family physician and was allowed to
temporarily halt the Lipitor. I also returned to the CombiPatch. Within
one day, I noticed a significant decrease in my restless legs.
Whereas I used to have to take Mirapex at about 3 p.m., and then again
at bedtime, being off Lipitor and FemHrt, allowed me to take only 10
mg. at 7 or 8 pm.
Today, I began a new statin called Zetia (10 mg.). Within eight
hours, I have noticed a significant increase in the restlessness of my
legs. I don't think that I'm allergic--at least I haven't started
itching, but is there any link between statins and RLS? I would
rather not take any drugs for my high cholesterol, and have peace with
my legs!! Do you know if there are any statins that don't exacerbate
RLS? I know that drugs like Reglan make RLS worse--what is with these
Nancy L. C., M.A.Van
I have never heard of statins (like Lipitor) causing or
worsening RLS and Zetia is a completely different class of cholesterol
drug not in any way chemically similar to the statin drugs. Of course,
anything is possible. I would have guessed that the female hormones would
have been the more likely cause as hormones are sometimes implicated in
It could also be that something else entirely is the
cause of your RLS worsening and may not even be linked to the itching
Sent: Monday, May 03, 2004 3:32 AM
Subject: Depression and RLS?
I am 54 years old and I've had RLS for 15 years. I've tried almost
medication which I've read in the e-mails. Either I couldn't tolerate
they quit working after some time, or they just didn't work. I have been
four different neurologists and I've been to the sleep clinic and
had an EMG. I get 1-2 nights of sleep a week and then I'm awake the rest
I used to be able to nap during the daytime but now I have the RLS during
the day also. I have the RLS in both legs and both arms, at different
I feel like I have no life of my own anymore. It has worsened since
and these have been long months, with it getting worse all the time. I
think my doctor understands the severity of it and I don't know how else
I am on disability for chronic depression and I worry that this is
my depression. I try to keep a good attitude but suicidal thoughts have
entered my mind. I'm also a "cutter" (self-abuse) and I often wonder if
would take away the RLS at least temporarily. I hope to reach my doctor
today. I am desperate.
Does depression effect the severity of the RLS? I'm also on Zyprexa for
psychotic episodes. My psychiatrist thinks that may be effecting it but
doesn't want to take me off of it yet. Is there any connection? Please
Thanks for listening,
A Medical Reply
Depression does not usually affect RLS, but many of the
antidepressant medications may worsen RLS. Zyprexa does negatively affect
the dopamine receptors, so it certainly may worsen RLS. Only a trial off
the drug to see if your RLS improves (with your physicians approval, of
course) would be able to confirm its affect on you.
Sent: Monday, May 03, 2004 8:23 AM
Subject: HELP!! Doctors are not helping my RLS problems!
I have had it! I cannot sleep at night. My
feet and legs go crazy! This is the most aggravating feeling, and it
always happens at night. I feel like I have live wires running through
my legs. I am taking lorazepam 1 milligram. and it is not helping. So, I
take night-time cold medicine. Ibuprophren and any thing else I can get
my hands on. I do not sleep well anyways.
Now it is worse. I found your
web-site on RLS and found my self laughing about some of the stories
people told. Because, not that the feelings in your legs are funny, nor
that you can't sleep. But, that, it was exactly what I was going thru.
My doctor won't prescribe much of anything for me. I had a car wreck in
1987 and had a broken right hip, now has 3 pins in it, a fractured left
hip, a fractured pelvis and severe whiplash. I have sciatic nerve
damage. A lot of pain there. He will not prescribe anything for this.
how do I get him to believe me about RLS??? I am at my wits end here.
Not sleeping, being nervous all the time, makes one want to get out of
this world. Like I said I have had it trying to make my doctor
understand me. He is a Chinese man and I can barely understand him, much
less he understanding me. He knows I have carpel tunnel syndrome too and
whip lash. He said whiplash heals???? and he has done nothing for the
carpel tunnel and now I have this jumpy legs. It is slowly but surely
driving me crazy.
Can you help me or offer me any advise as to what or
whom I should go to or get? Please help me.
Sincerely; Wanda G.
A Medical Reply
If you cannot communicate with your doctor for any
reason, then you have the wrong doctor and should change immediately. You
can either find another primary care doctor who is willing to treat both
your chronic pain problems and RLS or you can have him send you to various
specialists who have more expertise.
A sleep specialist or neurologist (second best) can
usually treat RLS. A neurologist may be helpful for sciatic and carpal
nerve problems, but a pain specialist (there are many of these around now)
can be very effective.
You should not give up until you have gotten help from
specialists who understand your problems and can communicate well with
Sent: Tuesday, May 04, 2004 10:40 AM
Subject: Question about Agent orange
I have read articles that RLS is a nerve problem and
also read that Agent Orange has been know to cause nerve problem. Do you
have any information on this subject or an option on this subject. I am a
63 year old male and have been found to have osteoporosis in the spine.
have tried Fosamax 70 and Actonel 35 both with calcium and Vitamin D. Both
the meds. causes problem with the Neurontin that I take for my RLS. It
just stops working. Any information on this problem.
Thanks for any information,
A Medical Reply
Agent Orange is very poorly understood as to what it
does and why only some people seem to have problems. RLS is also very
poorly understood as to its cause and mechanism. There is no literature
available linking the two problems although there certainly could be a
connection. I have not yet heard of any anecdotal reports which would
link the two diseases.
There is no known interaction between Actonel or
calcium and Neurontin so I cannot explain your observation that the
Neurontin does not work when taking them. If that is truly the case, the
maybe a change to Mirapex or Requip would be beneficial.
Sent: Wednesday, May 05, 2004 2:12 AM
Subject: Methadone for RLS?
I may be starting methadone in the
near future. I was curious why you recommend it so highly over other
opiates for someone that has no other options. What is it about
methadone that makes you say it is a better drug for RLS.
A Medical Reply
Methadone is one of the most potent narcotics for
treating RLS and it lasts often over 8 hours which is much longer than
most other narcotics. I do reserve it for severe RLS as less potent
drugs may then suffice.
A Reply From Mary P.
Sent: Friday, May 07, 2004 9:32 AM
Subject: Pain medications and RLS?
I'm having yet more trouble with my
pain meds controlling my 24/7 day and night RLS. I wrote a while back
that I was on 4- 50mg Ultram a day alternating twice a month with
Vicodin. I was starting to have some trouble with break through RLS on
my Ultram and it took 50mg of Vicodin to control it on my drug
holidays. I had my ferritin level checked and it was 89.
My doctor told
me I could try taking more iron which I did and after about 3 months my
Ultram was working wonderful again and I was down to 30 mg of Vicodin on
my drug holidays. I would take 100 mg Ultram at 7:30 in the morning and
it would work just fine until my second dose at 2:15 in the afternoon.
About 2 weeks ago, I started experiencing some breakthrough
RLS at times
and now I am fairly uncomfortable by 11:30 AM. I just did my drug
holiday this past weekend and I was up to 40mg of Vicodin to control it.
I don't know what happened when I had experienced such and improvement.
What do you think is going on and any
suggestions. Thanks very much.
A Medical Reply
First, once your ferritin level is above 45, taking
more iron should not help your RLS. I can't say why you may have noted
some improvement while taking more iron, it may have been coincidental.
It is difficult to say why your RLS is not responding
to your medications right now. It may be that the RLS is just getting
worse on its own for no good reason (it gets worse as you get older and
sometimes does this suddenly) or something that you are taking or doing
may be causing the problem.
It could also be that you are getting somewhat tolerant
to the pain medications although this is much less likely with the drug
holidays that you have been taking. Also, drug holidays only seem to
work if you completely avoid the drug.
Sent: Friday, May 07, 2004 11:38 AM
Subject: New to RLS
Am enjoying exploring all the resources of this website! Thank you for
making it available!
Being a new diagnosed with RLS, my physician has prescribed amitriptyline
(Elavil) to treat my RLS symptoms.
However, I'm reading and finding out more negative than positive where
Elavil and RLS is concerned.
I went so far as to question my physician about these findings, and he was
emphatic about my remaining on the Elavil for the time being anyway saying
it had been known to relieve the symptoms of RLS. Does this seem like the
best advice? Is there a particular drug that has been found to be "most"
effective in relieving RLS symptoms?
A Medical Reply
Elavil (and all the older tricyclic antidepressant
medications) tend to worsen RLS. A small minority of RLS may actually get
relief from this drug (under 10%) which occur in mild RLS sufferers who
only have RLS at bedtime so that the sedative side effects of Elavil may
put them to sleep before the worsening can be noticed. It is generally
recommend that RLS patients stay away from this drug.
I normally suggest Mirapex or Requip for mild to
moderate RLS. They are usually very effective and can be used at
relatively very low doses which will result in few side effects. The pain
killers may be more effective for treating severe RLS, but we try to leave
those drugs for the tougher cases not improved by Mirapex or Requip.
Sent: Sunday, May 09, 2004 4:24 PM
Subject: RLS/PLMD and Prozac?