Sent: Tuesday, February 28, 2012 9:01 AM
Subject: Throbbing sensation as a form of RLS
I am writing about a strong throbbing sensation in my legs which prevents me
from sleeping and has been diagnosed as a form of RLS, and for which no relief
has thus far been found. I have the following three questions: (1) do you know
of anyone who has ever had RLS with these symptoms (which are described in
detail below)?; (2) if so, do you know of any means of relief?; and (3) if you
haven't come across these symptoms as RLS, do you have any idea of what else it
might be?
Background information:
(1) I was diagnosed with RLS ten years ago, with the somewhat standard symptoms
of a strong desire to move my legs and, less often, my arms when I tried to
sleep. I have a sleep doctor who prescribes Mirapex for this condition and it is
under control. I also have insomnia, and my sleep doctor prescribes Trazodone
and, if necessary, Lunesta; and the insomnia was under control until the
throbbing started.
(2) The throbbing sensation began about 18 months ago, and gradually went from a
slight sensation to what is now a strong pounding sensation. It goes on all the
time, but is stronger at night. The throbbing is a rolling sensation and
generally synchronized with my pulse. There does not appear to be any
discernible physical throbbing. Emotional tension can make it worse.
(3) When I told my internist about the condition, he sent me to a cardiovascular
specialist, whose tests found no circulatory problems, and then to a
neurologist, whose tests found no neurological problems. I have continued with
the neurologist in an attempt to find a remedy, and the neurologist thinks the
throbbing may be a form of RLS, in part because I have already been diagnosed
with RLS. But neither he nor my sleep doctor has heard of my symptoms before, so
from their standpoint the diagnosis is something of a guess. The neurologist has
prescribed a series of medications over the past year: Mirapex ER; Requip XL;
Sertraline; Gabapentin; and Horizant. These medications have had no appreciable
effect.
(4) I have also tried devices that wrap around the legs and contract and expand
to help circulation, but they provide only very limited psychological relief. In
addition, I have tried professional massage, acupuncture and a holistic
approach, none of which was helpful. Physical exercise, whether mild or
extensive, does not provide relief and can make it worse.
(5) During the daytime, the throbbing is lessened, and even goes away for a
limited period, if I do something that requires mental effort (even driving a
car) or if I am seriously distracted. I have tried thinking through abstract
problems at night, but with very limited success as the throbbing dominates once
I try to sleep.
I would very much appreciate any help or direction you can provide regarding my
condition. Although it isn't life threatening, it does constitute a serious
lessening of the quality of life.
John B.
Medical Reply
Since I have seen so many RLS patients, I have heard of symptoms
somewhat similar to your throbbing that have been due to RLS. Furthermore, the
cessation of symptoms with mental activity would add a little support for those
symptoms being RLS.
However, the key test to verify if symptoms are RLS related is to determine if
they are associated with an irresistible urge to move and improve with movement.
Since that is clearly not happening in your case, your throbbing pain symptoms
are very unlikely to be caused by RLS. In addition, most RLS symptoms would have
improved somewhat with the series of medications that you have been given
(except for sertraline which typically worsens RLS symptoms).
It is possible that your pain is due to a neuropathy (which is often associated
with RLS but separate from RLS). That can be difficult to diagnose even by a
neurologist and various nerve conduction studies. Most neuropathies respond
somewhat to gabapentin and Horizant so that makes the diagnosis even murkier.
It may be interesting (but not really diagnostic of anything) to see if your
throbbing pain responds to opioids (Vicodin, tramadol, etc.).
Sent: Wednesday, February 29, 2012 3:11 PM
Subject: RLS and deep brain stimulation (DBS)
I have had RLS for 17 years and have taken almost everything available with no
satisfactory result. I am also going through a major depression (refractory) and
am on Cymbalta 60 mg and Imovane 15 mg Temazepam and 12.5 mg of Seroquel. I
sleep with this but also sleep most days as well as night. My psychiatrist had
suggested being a candidate for deep brain stimulation. I have already gone
through ECT with no help.
This the last resort for me and although it may help my depression it may leave me where I started some many prescriptions ago-not sleeping because of RLS. Have you any information on DBS effectively treating RLS? The only drug I have not tried is methadone and all the doctors I see in BC, Canada, will not prescribe it and I was wondering how I can influence them to try this before going through DBS.
Medical Reply
There are a few issues about your case. The Cymbalta and
Seroquel (which are likely necessary for your depression) worsen RLS. You might
do better if the DBS improves your depression and enables to back of those drugs
(however, if they are necessary then you must stay on them despite any worsening
of RLS).
We really have very little information about the effect of DBS on RLS but it is
likely that it will have little or no effect (good or bad). If you do get the
DBS, let us know how it effects your RLS so that we can add that information to
our database of RLS knowledge.
Methadone is a very reasonable choice for severe RLS when all the other drugs
have failed. If may be difficult to convince your doctors (especially Canadian
doctors who are known to be very shy about using potent opioids) but you could
use the 2 books that I have written (see our website) for more authoritative
medical support.
Sent: Wednesday, February 29, 2012 9:43 PM
Subject: Medication questions
I was diagnosed with Restless Leg Syndrome, Hypnic Jerks and Migranes about two
years ago after an extensive video EEG study to rule out frontal lobe epilepsy.
For the past two years, I have been taking 600 milligrams of Gabapentin and 1
milligram of Clonazepam to control my symptoms. The medications work well, but
are very sedating which poses a particular problem because I cannot be certain I
can wake up when needed to take care of my children.
When I am not on the medication, my symptoms occur as I begin to fall asleep,
during sleep and also upon waking. I experience shrugging of the shoulders,
straightening and stiffening of the arms and leg movement. Occasionally, I can
experience a tremor of my left hand. During times when I am awake, I do not have
symptoms.
I have tried discontinuing the Gabapentin and the Clonazepam for a trial period
of Mirapex. The Mirapex was not at all effective, which is confusing to me since
I thought it was a medication specific for RLS.
Are there other medications that can control the symptoms without the sedation?
When I am not medicated it can take about 2 hours to fall asleep. I may sleep
for about 2 hours and then the whole cycle begins again.
On another topic, I have read that you suggest methadone as a safe treatment of
RLS during pregnancy. Are there other physicians who are willing to prescribe
methadone? How would you suggest a patient bring this up with their physician? I
would like to expand our family, but I am concerned with the potential risks of
my current medications.
Christine
Medical Reply
It is not clear from your letter than you do indeed have RLS.
This is a diagnosis that is often made complicated cases such as yours without
the patient fulfilling all the diagnostic criteria. Your hypnic jerks and other
limb movements have many of the features of RLS but the key diagnostic criteria
is an irresistible urge to move your legs when at rest (with or without other
strange sensations in the legs) and an improvement of these symptoms with
movement or walking. Although Mirapex does not help every RLS patient, over 90%
of RLS patients respond to this drug (at least initially) which puts further
doubt on your RLS diagnosis.
Clonazepam is a very long acting drug (half-life of over 40 hours) so next day
sedation is very common (which is one of the reasons why I typically recommend
avoiding that drug). Combined with a significant dose of gabapentin which also
causes sedation it is not surprising that you are complaining of sedation.
I cannot really make any further suggestions until you definitively determine
your correct diagnosis. Although your current drug combination helps you sleep,
I cannot really figure out what they are treating (and propose reasonable
alternative medications) other than insomnia (which has many different options
depending upon the cause).
A Reply from Christine
Sent: Thursday, March 01, 2012 2:52 PM
Subject: Re: Medication questions
On occasion, I do have the urge to move my legs because it is uncomfortable to
stay resting for long periods of time (about 3 hours or greater). However, the
symptoms which caused me to seek treatment are not caused by any sensation or
urge, they are involuntary movements that disrupt falling asleep and staying
asleep. The symptoms do not go away with purposeful movement. This happens
virtually every time I were to try to sleep whether it be a nap due to the flu
or every night when I go to bed.
When I was discharged from the video EEG study, the diagnoses were RLS, hypnic
jerks and migraines. The insomnia is caused by the movement and I do not believe
it to be a separate concern. I was told they were trying to control the
movements with the medications so I could fall asleep and stay asleep. On the
video, I was able to see the movement which appeared to have a pattern beginning
with shoulder shrugs, arm stiffening or crossing and then leg movement. At one
point in the middle of the night, I held up my hand in front of my face looked
very closely at my hand and then put it back down. I was asleep the entire time.
How would I go about a second opinion? Should I request my records from the
video EEG, all of my blood work and MRI scans? I am at a loss since I have
already been through a lot of testing.
Christine
Medical Reply
You definitely do not have RLS as RLS is an awake problem and
must have the irresistible urge your legs with every episode (especially when at
rest, usually even for a few minutes). RLS cannot be diagnosed on a sleep study
but PLMS (Periodic Limb Movements in Sleep or leg kicks) can be diagnosed. Often
doctors label the PLMS problem as RLS since over 85% of RLS have PLMS but PLMS
occurs very often without RLS.
Your movements that prevent you from falling asleep may be PLMS or hypnic jerks
and a good sleep specialist should be able to differentiate these two problems.
It might be best to see a sleep specialist who is also a neurologist (preferably
a movement disorder neurologist) who should be very helpful in determining the
cause of your movement/sleep problem.
Sent: Saturday, March 10, 2012 6:16 PM
Subject: MY SEVERE REFRACTORY RLS AND METHADONE
Recently, about a week or more, my RLS has become out of control. I had to stop
Neurontin because I was taking 1800 mgs a day, could not take less because it
didn't work, and it caused 25 lbs weight gain in only 5mos plus I was having
difficulty speaking and I work in the research industry, currently working
oncology. I also have to write technical reports, which I know is located in the
same part of the brain. I am also aware that the weight is supposed stabilize
within 9 mos. I couldn't afford to gain more.
Nevertheless, it was clear to me that Neurontin was not the drug for me. As a
matter of fact, it didn't work alone, because I had to take lots of narcotics to
get the desired affect. So I stopped Neurontin and tried Topamax. This did work
for about 2 weeks only and then all hell broke loose. Anyway, to make a long
story short, I am on my last hope....methadone. They started me on 2.5
mg....they said that no one who has not taken this drug before ever starts with
5mg. After two days, my body was completely used to the drug and I was still
going crazy. No real sleep in 5 days so far.
So now I have escalated myself to 5 mg. Hoping this will work.
It is my first night. I know the literature states that this is the best drug
for refractory RLS. Do you know if there is a standard dose that usually will
work for people. I am 48 years old and still must work. I have stopped taking
all other narcotics. Although they have allowed me to take 2 Percocet tablets a
day, although not two at a time. I do not take Percocet at all because they
don't do me any good unless I take 2 or 3 at a time because I have taken so many
that my body won't respond to just one. They also have given me valium for my
nerves as I am a nervous wreck, very depressed, almost suicidal without any
sleep or rest or relief for so many days. I am seeking therapy and am starting
myself on Wellbutrin, which I believe is the only antidepressant which should
not contraindicate itself with RLS.
It's hard not knowing another person with my severity. But please can you give
me some insight on the success or possible success of this route.Currently, I am
not working (short term leave...it's not safe and I have not had a decent
night's sleep in sometime. Hoping to get some relief tonight.
It is clear to me that I will need to be on this medication for
the rest of my life....is that possible?
Leisa L.
Medical Reply
Refractory, severe RLS cases such as yours are typically very
difficult to treat and there is not one simple treatment or drug that helps
everyone in this category. Often, we use a combination of drugs so that we don’t
have to go very high on one drug such as you have done with the Neurontin.
Although I sometimes start methadone at 2.5 mg (older patients), I mostly start
at 5 mg. The dose must be individualized and there is no set dose for any
patient. I generally do not exceed 30 mg daily (10 mg three times daily) but I
always try to find the lowest effective dose (which is why I add other drugs and
use combination therapy).
I don’t use much Neurontin/gabapentin as the side effect profile is much higher
than Lyrica or the new Horizant which also tend to be more effective.
Most severe RLS patients will need medication for life so the drugs should be
chosen carefully and monitored closely. You may have to see an RLS expert if
your current doctors cannot take care of your problems.
A Reply from Leisa
Sent: Friday, March 30, 2012 1:43 PM
Subject: RE: MY SEVERE REFRACTORY RLS AND METHADONE
I wanted to let you know that now I am on methadone (5 mg), which takes away all
the symptoms of RLS. But I am having lots of constipation and just recently
nausea/queasy stomach for about 1.5 weeks. I've been on the drug so far for only
3 weeks. I'm also wondering if that dose of methadone could cause water
retention because although I lost ten pounds, because I haven't eaten much, I've
just recently gained a pound and I can't imagine why. Anyway, do you know if the
nausea will be with me forever or is this an expected effect for a period of
time until your body adjusts. My life has been hell just trying to get this
under control.
Leisa L.
Medical Reply
Some patients do suffer from constipation with opioids, especially potent ones like methadone. Colace 100 mg and MiraLax (both available over the counter) typically take of this problem quite effectively and safely. The nausea can be a tougher problem as most anti-nausea medication makes RLS worse. Zofran and Kytril work very well for opioid related nausea (without worsening RLS) but we try to avoid using a treatment that requires continual use of another medication to reverse its side effects. There is a reasonable chance that with a little more time (few weeks) the problem may get better but if not, it will likely persist. However, there may be other ways to deal with this problem.
Sent: Sunday, March 11, 2012 5:50 AM
Subject: Is there a RLS--spinal stenosis connection?
I have severe RLS/PLMD, which has worsened over the past 5 or 6 years.
It's 24/7, but now fairly well controlled by 4 mg Requip XR + 0.5 Requip every 4
hours night and day + 10 mg OxyContin at night.
Without the meds, or if I'm stuck sitting somewhere, my entire body jerks every
15-20 seconds.
I was recently diagnosed with moderate to severe spinal stenosis ("grade 1
anterolisthesis of L4 with respect to L5 with moderate to severe spinal stenosis
at this level. This could result in impingement upon the right L5 root sleeve").
This has been coming along for years.
Yesterday my sciatica kicked up and I noticed that the needle-like jabs in my
foot were coming at the rate of 15-20 seconds. Just like my RLS/PLMD. I found
several old posts (~2003) on the So. Calif. RLS website that hypothetically
connected RLS and spinal stenosis.
Are you aware of any new studies that are firming up such a connection? I'm
considering cortisone shots in my spine to see if that might help.
Sharon S.
Medical Reply
There is no known direct relationship between spinal stenosis and RLS.
However, any pain in your body may worsen RLS symptoms.
Sent: Sunday, March 11, 2012 7:39 PM
Subject: RLS Help
I have so appreciated your website as a resource. My 28 year old son has RLS,
marked by pretty severe pain. The urge-to-move component is present but subtle
in him, but two sleep studies have shown that he has leg movements interfering
with REM sleep. In addition to sleep disturbances this causes, he has been
diagnosed with Delayed Sleep Phase Disorder. He has trouble going to sleep and
staying asleep and never feels rested.
He has been diagnosed with RLS for 3 years and is treated by the Head of
Neurology at a major hospital, but we are losing hope of finding the right
medication to allow him to function fully and work full-time. As our efforts
drag on without success, he is having a harder time with the constant resultant
fatigue.
He has tried the following medications without any relief:
Gabapentin at the maximum dosage, no RLS relief, though it did limit anxiety
which he had sometimes had
Ropinirole, discontinued due to nausea at the beginning dose
Pramipexole, discontinued when increased dosages produced no relief
Amantadine, discontinued due to causing purple-tinged vision and no relief
Lyrica, up to the maximum dosage, only the faintest relief, so that he became
disillusioned and gave up on it.
Rozerem, with only minimal help
Presently, he is taking Tramadol ER, Temazepam, and Zolpidem CR. The Tramadol ER
100 mg. was the first thing to put a dent in the leg pain, but when the
prescribing doctor tried increasing to 200 mg., it caused shortness of breath,
so the 100 mg. was settled on. Horizant has just been added to the mix, and he
says it may help a bit, but it's too early to tell.
What would you advise as the next step for such a stubborn case of RLS? Is there
any chance the diagnosis is not quite right?
Doy in Chicago
Medical Reply
Your last question is probably the most insightful one. I am
very suspicious that RLS may not be the correct diagnosis. The urge to move when
at rest is the paramount criterion for diagnosing RLS. That must be
unequivocally present in order to establish the diagnosis. Furthermore, over 90%
of RLS patients respond to pramipexole and the lack of relief with the other
medications adds further support to exclude RLS.
Tramadol does help RLS but also helps pain in general so the relief of his leg
pain by this drug is not helpful to diagnosis of RLS. The leg movements found on
the sleep studies are mildly supportive of a diagnosis of RLS but they occur for
many other reasons so they also do not confirm the diagnosis of RLS.
Sent: Monday, March 12, 2012 9:13 PM
Subject: Re: RLS and Pregnancy
Is there any research to support not eating past a certain time at night? I have
read a few blog posts but nothing that is scientific.
Anne M.
Medical Reply
There is definitely nothing published or known (researched scientifically) about this topic. Furthermore, although this might be an issue in a few RLS sufferers, it is unlikely to be a common problem.
Sent: Wednesday, March 14, 2012 9:21 AM
Subject: Opioids for RLS?
Below is a note that I asked for help with on the RLS foundation forum and was
wondering if you had any additional thoughts? Also, do you know of any doctors
in the Massachusetts area that specialize in RLS. Any help you could provide
would be greatly appreciated. Thank you.
I am new here and I've been struggling with RLS for 10 years. I have a few
questions on medication and how to go about asking my Doctor for help but also
have some questions on withdrawals from opiates.
About 5 years ago I saw my Primary Care and after many visits thereafter I was
prescribed hydrocodone for my battle with RLS. I began taking the medication and
my life drastically changed, no longer did I have RLS and I was able to actually
get a good night sleep. About one year ago my primary care passed away and my
new doctor decided that Hydrocodone was not the answer. I've been slowly weaning
myself off for about a year while seeing Rheumatologists and Pain Management
doctors. During this time I've also been prescribed Tramadol which literally has
no effect on the RLS.
I do have an upcoming appointment with a Neurologist to talk about my issues and
had a few questions:
In today's day and world with prescription drug abuse I fully understand a
doctor's hesitation in prescribing hydrocodone but I have an ongoing problem
with RLS that has only eased with hydrocodone. How do you go about asking a
doctor for this medication? I've never had to actually ask, my previous primary
care understood the pain and awful feeling us RLS sufferers go through.
As far as withdrawal goes, have any of you ever been through it? I am currently
down to taking (2) 2.5 mg pills per day, morning and night. I was originally
prescribed 10mg three times daily. Even though I am suffering, I've done it
knowing the possibility I will not be prescribed this medication anymore.
Medical Reply
There is a little more information necessary for you to
understand the issues involved in your therapeutic dilemma.
Most of the RLS specialists (like me) prescribe a lot of opioids for the RLS
patients that we see (especially since we tend to see the more severe patients).
Opioids are not first line drugs for RLS but rather last resort drugs when all
the other drugs are unsuccessful at controlling the RLS symptoms. In addition,
hydrocodone always come attached to another drug (typically Tylenol) which does
not help RLS and thus exposes you to a drug that may cause harm with long term
use (kidney, liver damage) without any possible benefit. Therefore, we tend to
use smaller doses of the more potent opioids (like methadone, oxycodone) that
are readily available in their pure form and not combined with another drug that
has any potential for harm needlessly.
If you try to withdraw from the hydrocodone, it is very predictable that your
RLS symptoms will very quickly become a problem (as you are taking away your
only treatment). Most RLS experts would suggest that you try one of the FDA
approved drugs like the dopamine agonists (Mirapex/Requip) or the
anticonvulsants (Horizant or the non-FDA approved Lyrica or gabapentin). If
these fail to help, then the opioids would be appropriate. When you get to that
point, I do have several suggestions to make getting opioids from your doctor
easier.
Sent: Thursday, March 15, 2012 7:44 AM
Subject: Re: RLS and my struggles with Meds and Doctors
My neurologist wanted me to try 3 Neurontin tablets per night. I've been on 3
pills for almost a couple of weeks now. I am also taking an 800 mg Ibuprofen
that was prescribed for an ankle sprain. Lastly, I've been taking 2 Benadryl
tablets at night. Initially, it was for some itching, etc.
The combination of all of those seem to let me sleep most of the night. However,
I do still have the need to move my legs as I'm trying to fall asleep. I think
the addition of the Benadryl is helping me stay asleep, but I feel just as tired
when waking up. I combat the tired feeling with lots of coffee (although I don't
have caffeine after 12:00noon). I think the Neurontin might be affect my
behavior and mood. I am not interested in doing things. I just want to come home
from work, watch a little TV, and then go to bed. I don't seem to feel anything
emotionally/physically for my wife and I know my son wants to play and do things
with me, but I'm just not interest. Granted, it might be the fact that I'm
constantly tired, but part of me is thinking that it is the Neurontin.
Steve B.
Medical Reply
The problem with Neurontin is that when most patients achieve
relief the dose is usually very high and side effects (fatigue, sedation,
dizziness such as you have been noting) are very common and limit the use of
this drug.
Although Benadryl is the key ingredient in most OTC sleeping pills, it tends to
worsen RLS symptoms (so not recommended at all for RLS sufferers) and it also
typically causes morning sedation (especially when combined with Neurontin).
As you have already surmised, a large portion of your current difficulties are
most likely occurring because of your present treatment. Most neurologists who
treat RLS do not have complete enough knowledge and experience to understand the
various nuances of treating difficult RLS cases.
Sent: Monday, March 19, 2012 11:56 PM
Subject: Mirapex Augmentation and Horizant
I am a 51 year old male and have been treated for RLS since the early 90's. I
was first prescribed Klonopin, followed by Requip and Mirapex once they became
available. I began having augmentation but would go off the Mirapex for a couple
of weeks using hydrocodone and then start the Mirapex back up because I thought
it was the only thing that gave me proper sleep and relief. After learning more
about augmentation from reading your website, I discovered that I must stop
taking Mirapex altogether.
I used hydrocodone 5/325 and 1mg of Klonopin to slowly wean myself from 1 mg of
Mirapex to none over a three week period. I have currently been without Mirapex
for 49 days. I began taking Horizant a month ago and I am still taking the
Klonopin although I sometimes take .5 mg due to drowsiness the next day. My
daytime and early evening symptoms are mostly non-existent but once I lay down
to go to sleep I began to get the RLS symptoms. I then take 2-3 hydrocodone
pills throughout the night in order to sleep.
How much longer will it be before my symptoms return to those of
pre-Mirapex dosing? My doctor is very understanding but we both believed I
should be there by now. Is it possible to supplement the 600 mg dose of Horizant
with a 300mg capsule of Neurontin at bedtime? Or, should I continue with the
opiates for a few more weeks and see if the Horizant can handle my symptoms by
itself?
Dave L.
Medical Reply
You have been quite insightful figuring out the augmentation
problem causing your worsened RLS symptoms and guiding your doctor to a
treatment plan. Getting off the Mirapex is the correct thing to do but the
process is much tougher and complex that you have may have realized (although by
now, you are probably getting closer to understanding this issue).
Stopping Mirapex once augmentation has occurred causes the RLS symptoms to
markedly worsen and most patient would need a higher dose than 3 hydrocodone 5
mg tablets to get relief (even with Klonopin). We typically recommend methadone
or oxycodone as they are more potent and do not contain acetaminophen (Tylenol).
Even though you have been off Mirapex for 49 days, it can take longer to reduce
your need for opioids. It is also possible that you have already arrived at the
dose of opioids that you may need indefinitely.
You could add Neurontin to Horizant but I would just add another Horizant tablet
(if your insurance company will cover it) as several of the studies have shown
that this is a common dose needed by RLS sufferers (despite that the FDA states
that one tablet is sufficient) and I have several patients who have done much
better with 2 or even 3 Horizant tablets. It is quite likely that you will need
more gabapentin in your body to be able to reduce your opioids and it may be
very difficult to eliminate the opioids completely.
Klonopin has not been recommended for treating RLS for many years as it has a
long half-life of over 40 hours (which is why you get sleepy the next day). If
you need a sleeping pill (which is the only function of Klonopin), then Ambien,
Lunesta or a shorter acting benzodiazepine would be a much better choice.
Sent: Tuesday, May 10, 2011 11:38 PM
Subject: Need Advice on Switching from Methadone to Tramadol
In 1998 I began taking Permax for severe RLS and over the next 5 ½ years worked
my way up to 3 mg. daily. Because of augmentation my doctor then switched me to
Mirapex which I took for the next 5 1/2 years and, again, worked my way up to 3
mg. daily. After the first 3 years or so, I began having augmentation of RLS
symptoms again so my doctor recommended a low dosage of methadone daily (7 ½ mg.
twice daily). I have been taking the methadone for 1 ½ years now and it works
very well for the RLS in helping me sleep all night; but I am extremely sleepy
during the day and I have the most horrid “hot flashes” several times every day
to the point of dripping with sweat and being red-faced most of the time.
This never happened until after I started taking methadone. Recently I went on a 3-day trip out of town with my daughter (who also has severe RLS) and was mortified to discover I had forgotten to bring my methadone with me. Of course I cannot obtain methadone without a written prescription from my doctor so, luckily, I was able to take my daughter’s tramadol. I took two 50 mg. tramadol tablets twice daily during the next 3 days and it worked great. I was not sleepy in the least during the day. When I got home, however, I reverted back to the same dosage of methadone I had been taking before and was not able to sleep for the next 3 days.
After much research on the web about methadone, I realized that it takes a while to build up in your body and around the 4th day, my RLS was finally put to rest again. I went to my RLS doctor (a neurologist who is nationally recognized as an expert on RLS) shortly after that incident and told him I would like to take tramadol instead of methadone because of the extreme sleepiness and sweating caused by the methadone. He was okay with that so I quit the methadone cold turkey (total of 15 mg. per day) and began taking one 50 mg. tramadol tablet at noon and two 50 mg. tablets at bedtime.
By the 3rd day of this regimen I was feeling horrible, the RLS
was back with a vengeance and I couldn't sleep. My face was red all the time and
I was sweating non-stop. In general I felt like I was coming down with something
like the flu. I was miserable! So, I started back on the methadone and, again,
it kicked in around the 3rd or 4th day. I absolutely hate how the methadone
makes me feel and would still like to switch to the tramadol but obviously need
to wean myself off the methadone.
Can you please advise me how to wean myself off the methadone and how much of
the tramadol to take while doing so?
Phyllis B.
Kountze, TX
Medical Reply
I have had a few patients who get side effects similar to what
you are experiencing on the methadone. Those are more unusual side effects but
as you have already found out, they do occur and are a very good reason to get
off the methadone. At the dose of methadone that you are currently taking, there
is typically no need to taper off (as it is very unusual to be
dependent/tolerant to that relatively low dose). Furthermore, you did not get
withdrawal problem when you were out of town and took your daughter’s tramadol
instead of your methadone. You could still wean off the methadone over a week or
2 if you are changing to tramadol (but this should definitely not be necessary
if you just change to another opioid as suggested below).
Part of the problem may be that you took only 3 tramadol tablets daily when you
stopped the methadone at home rather than the 2 methadone twice daily which you
used on vacation. I would have thought that you might even have needed a higher
dose of tramadol than that to replace the much more potent methadone. Another
choice to replace the methadone would be another opioid such as oxycodone (it
may work as well as the methadone but may not share in its side effects).
If you want to stay on the tramadol and a higher dose does not completely
resolve your symptoms, then adding Horizant or Lyrica may be very helpful to
control your RLS symptoms (or even reduce your need upon a potent opioid).
Sent: Wednesday, March 21, 2012 3:49 AM
Subject: Acupuncture
It's me again. I have had plantar fasciitis for two years. I've tried everything
with no relief. I was going to try acupuncture. Before I do, though, I wanted to
know if it would negatively affect my RLS. I couldn't find mention of it on your
website.
Dale K.
Medical Reply
Acupuncture has never been demonstrated to be helpful for RLS symptoms. I have had many patients try this therapy without success. However, it should not worsen your RLS so there is no reason not to try it.
A Reply from Dale
Sent: Monday, May 07, 2012 2:24 AM
Subject: Percocet
I have been taking Percocet for about three months now. It helps with the RLS,
but since taking it, I feel that the RLS has gotten worse. Can Percocet do that?
I take two to three pills every afternoon to alleviate the RLS symptoms. The
problem I'm finding is that the symptoms start earlier in the day than before. I
have not increased the dosage of Percocet but if it is going to make the RLS
worse, I would like to wean myself off of it.
Dale K.
Medical Reply
I have never heard of opioids making RLS worse. Most all my patients on opioids have done well for years or decades without any apparent worsening. Your problem may be due to something else or completely unique to you.
Sent: Thursday, March 22, 2012 9:17 AM
Subject: RE: Medication change with RLS
My husband's neurologist has given him a prescription for 10mg methadone and we are trying to figure out how to proceed. His Dr has little experience with this medication for severe RLS and we have spoken to the pharmacist but can't get much practical information. He began by taking 10mgs at night only and slept very well for the first time in 25 years (it seemed like a miracle). There are 2 problems we ran into: excessive sleepiness during the day and trouble concentrating/functioning; having to take 3/4 Norco during the day, 1 immediately upon awakening.
He continued with this regimen for 12 days but the daytime
issues didn't go away so we dropped the methadone to 5 mg at night which allowed
the RLS symptoms to breakthrough, so we upped it to 7.5 mg at night.
This works but in the early morning he began to have panic attacks with the RLS
breaking through with a vengeance. We wondered if it was really a detox effect
from not taking Norco at night (which he has done for at least 15 years). This
led us to try the idea of just methadone all day and totally stopping all Norco.
We first tried 2.5 mg twice per day but he was having sweats and panic attacks,
so we upped it yesterday to 5mgs in the early morning and 2.5 mg in the
afternoon with 7.5 mg at night. He is still suffering a lot of sweating and
feeling bad but we are frightened to use too much.
We don't know how much of the symptoms are getting off the Norco or just his body becoming used to methadone. He experiences terrible shakiness/nausea, panic attacks in the morning and goes in and out of that to a lesser extent all day. The sleeping during the night is heaven but the day is becoming hell. I feel like we are out here on our own trying to figure this out and scared to death because we are dealing with a major drug. This is no reflection on our Dr or pharmacist its just that they don't have experience with this and can't help much.
It is becoming disheartening to my husband who has fought with
RLS for so long because he suffers so much during the day and we are feeling
around in the dark. It doesn't make it easier for any of us that he is on blood
pressure meds and is having some itching both which could be complications with
the methadone. Any practical advise or information on pointing us to other who
have gone through this would be greatly appreciated.
Donna N.
Medical Reply
You are correct in not blaming your doctor or pharmacist for not
helping much with your RLS therapy as treating with methadone is not well known
outside of a small group of RLS specialists (especially for tough cases like
your husband).
It is hard to advise you based on the information you have given (despite your
fairly good second hand description, it is very different when I see the patient
face to face and get every detail). I can give you some general info which may
help you with your doctor.
I often give methadone as high as 10 mg three times daily but as you have
already been trying to do, finding the lowest dose that works is the correct
thing to do. This can often be done only by trial and error. Your dose of
methadone should cover any issues with stopping the Norco so the sweating may be
a side effect of methadone (in which case, changing to oxycodone may be
helpful).
The other intervention that may be considered is adding a drug like Horizant or
Lyrica. These drugs may be able to help you reduce the dose of your opioids
while controlling the RLS symptoms.
Sent: Thursday, March 22, 2012 7:24 PM
Subject: Worsening RLS
My mother is 83 years old and suffers from severe restless legs. She has had RLS
since she was 25 years old. Her Ferritin level is 90. She has used 1 mg of
Requip for years. She took a maximum of two pills per day.
Last year her RLS worsened after a herniated disk. She had a spinal fusion at
L3-4 with decompression. After the surgery, her RLS greatly improved.
This year L5-S1 herniated resulting in compression. She now has bi-lateral leg numbness with standing or walking for more than five minutes. Her RLS has increased greatly. She is now taking 4 - 6 Requip to get through the day. It seems the RLS is starting earlier each day at around 10:00 AM. The RLS symptoms are getting much worse. She now has leg jerks when laying down and falling asleep. She gets 3 to 5 hours of relief with a Requip. She takes 5 mg of Oxycodone twice a day to help with back and leg pain. This also helps with the RLS.
I'm not sure if she is experiencing augmentation. I'm thinking Methadone would be reasonable alternative at this point. What would be a proper dose for Methadone? If she is experiencing augmentation, should she stop the Requip and use a combination of Methadone and Oxycodone? Last week she entered Hospice for end stage congestive heart failure. Nothing would make her happier than to get relief from the RLS.
Dave L.
Medical Reply
It does sound as if your mother has augmentation from taking
increased doses of Requip. One of the strategies used by many RLS specialists is
to discontinue the Requip and replace it with a potent opioid. Methadone and
oxycodone are both good choices and typically we only use one at a time.
Methadone lasts longer per dose (usually 8-10 hours/dose compared to 4-6 hours
with oxycodone) so can be dosed less frequently and also tends to work better
(less side effects and more effective than other opioids for RLS). However, this
is a very individual phenomenon and some patients do better with other opioids.
The addition of Lyrica or Horizant often helps the RLS discomfort and may also
help with nerve related pain from the herniated disc (and perhaps allow a lower
dose of opioids).
A Reply from Dave
Sent: Tuesday, March 27, 2012 8:00 AM
Subject: RE: Worsening RLS
My mom is going out of her mind crazy with the restless legs. She has access to
oxycodone through hospice. Her internal medicine doctor did prescribe Lyrica at
25 mg once per day. She discontinued Methadone and she felt like a zombie.
Can you offer an advice on doses of both the oxycodone and Lyrica?
Dave L.
Medical Reply
I can’t give you any direct advice for your mother since I don’t
know her whole case and all the details (which can make a huge difference when
recommending doses of medication).
However, in general, I usually prescribe oxycodone 5 mg, starting as little as ½
tablet to 2 tablets every 6-8 hours as needed (always trying to find the lowest
dose that is effective and well tolerated).
The older the patient, the more careful one should be as higher doses can cause
significant side effects.
When treating patient over the age of 70-75, I typically start Lyrica at 50 mg
twice daily (or lower) and increase to a maximum of 300 mg twice daily. However,
it is likely that the higher doses (150 mg or more) will likely cause side
effects (sleepiness, dizziness) that will make the drug intolerable.
Sent: Wednesday, March 28, 2012 12:16 PM
Subject: Horizant dosing
I¹m 53 and had RLS for 20 years and tried most of the RLS meds. After reading on
your site, I think trying Horizant makes sense. My family doctor has not
prescribed Horizant before, but is willing to try it. I had several questions:
1) What is the half life? How long does it last after taking a dose?
2) Does Horizant have a quick onset (like oxycodone) or does it have to achieve a blood level (like Neurontin)? Can it be discontinued or should it be tapered?
3) Standard instructions are 600 mg, 1x day at 5 pm with food. Is taking it with food to reduce upset stomach?
4) Are there any prominent side effects you¹ve seen?
Erik, Denver
Medical Reply
There is no easy answer as to the half-life of Horizant (or any
other time release medication) as the half-life refers to what happens to the
drug after it gets absorbed into the body. Horizant passes into the body through
the large and small intestines and is transformed into gabapentin. The half-life
of gabapentin is 5 hours but levels are maintained by more drug slowly being
released.
Horizant takes about 2-4 hours to start working, peaks at 7 hours but then lasts
about 10-12 hours. The drug can be stopped abruptly without any concern except
for the return of RLS symptoms. The drug is taken with food as that helps its
absorption through the bowel (there is no stomach problems with this drug, with
or without food). Taken without food, considerably less of the drug is absorbed
(possibly as much as a 40-50% decrease) and will act more quickly and not last
as long.
The most common side effects are drowsiness and dizziness but for most patients
this peaks 7 hours after taking the pill at 5-6 pm which is at 12-1 am when
those side effects may be beneficial or not noticed. Some patients may
metabolize the drug more slowly and experience those symptoms the next day.
Typically, if daytime symptoms occur, they persist for only a few weeks then no
longer cause problems.
Sent: Friday, March 30, 2012 9:59 AM
Subject: Peanut butter treats RLS symptoms
I use the spoonful of peanut butter and it works for me to. I have severe RLS
for 5 years now and on 1.0 Mirapex which sometimes makes the RLS come on. I one
night was having a bad creepy crawling in legs, arms, and lower back. I went to
make me some cracker and peanut butter sandwiches and noticed 15 minutes later
the twitching and creep crawling was gone.
So, now my husband wakes me sometimes when I start rocking my
legs and tells me to go eat my peanut butter. I believe it works and will
continue to keep the peanut butter jar full in my house.
Lisa C.
Medical Reply
Thanks for interesting letter. A few other RLS sufferers have noted that they either get better with certain foods or worse with others. Let us know if the peanut butter solution keeps working for you in the future.
Sent: Friday, March 30, 2012 8:38 PM
Subject: Perplexed by my RLS treatment plan
I was diagnosed with RLS at the age of about 58 although I had some echoes of it
before then. Started off at 0.5mg Requip at night and now up to 2mg. I always
seem to be at the edge of its effectiveness but it certainly has made a
difference. The other night I had to attend an emergency and did not get back to
the house until 2am. I was absolutely exhausted – but as soon as I went to bed
the restless legs started with a vengeance. It was much worse than I had ever
experienced before and I was told that this was due to augmentation. Originally
I thought that augmentation was that the drug was losing its effectiveness and
thus the dose needed to increase to get the same effect. But now I understand
that Requip inadvertently makes RLS worse and that is the reason the dose needs
to be increased. This sounds like a very nasty and unhealthy spiral. It seems
that there is no actual ceiling to this process and there is the eventual
possibility of being on high doses without the ability to withdraw the
medication.
I also appreciate that my cure has not come without a price. Sleep problems, nausea, agitation, depression, anxiety, etc. Are these a side effect? I am not really sure, but I repeatedly read about these types of side effects on the forums. The neurologist prescribed the Requip but it is my PCP who is addressing these side effects with yet more medication bupropion and trazodone. I am not sure these do any good or whether they are just replacing these side effects with equivalent side effects of their own.
So I want to prepare a plan to get off the Requip (and the bupropion and trazodone) but realize that (a) I have to deal with the Requip withdrawal, and (b) I still have to deal with the RLS. I am not sure what helps when tapering Requip but would appreciate any advice on this, and then what is my best option for trying to avoid re-medicating for RLS.
Curiously enough my RLS is limited to my left leg which also has
quite a bit of numbness from spinal radiculopathy (L5-S1) and I have always felt
that there is a correlation between episodes of increased back problem (pain and
numbness) and the RLS. When I mentioned this to my neurologist (I can only email
him in my HMO) he curtly replied RLS is a brain disorder. Again, has there been
any studies on this sort of thing?
Phil R.
Medical Reply
You are correct that dopamine drugs like Requip can cause a
spiral of increasing need for the drug which in turn makes the problem
(augmentation) worse. I have seen patients on massive doses of Requip (4-8 mg,
three times daily and higher) which only resulted in worsening and uncontrolled
RLS symptoms. It does sound like you may be experiencing augmentation and
stopping the drug is one of the key treatments.
The concern here is that when augmentation occurs, stopping the dopamine drug
causes severe worsening of your RLS symptoms which may last for several weeks or
longer (months). Without proper treatment (usually potent opioids like methadone
or oxycodone), the withdrawal process will end up being a living hell (which
will make your current status seem quite good). Most physicians do not know how
to do this and will be unwilling and unable to prescribe the drugs needed to
make this transition occur almost painlessly (which is very possible in the
hands of an RLS expert).
The nausea is likely from Requip (known side effect) but the other symptoms are
likely from being bothered by your poorly controlled RLS symptoms. Proper
treatment of your RLS may have a very good chance of eliminating your need for
antidepressants.
The neurologist is correct about RLS being generated by the brain (this is our
best theory for now but not really proven) but he is wrong about implying that
the nerve problems that you are experiencing are not make the RLS problem worse.
In fact, any pain (back pain or general arthritis, etc.) or stress will worsen
RLS symptoms and this is a very common experience amongst RLS patients. There
are no studies on this issue but it is a very well known phenomenon by those of
us who treat lots of RLS patients.
Sent: Saturday, March 31, 2012 1:59 PM
Subject: Re: perplexed by my RLS treatment plan
I am hanging my hat on my back problem being the trigger for my RLS. While I
agree that all peripheral sensations are actually ‘felt’ centrally, there is
usually some sort of afferent component that allows our brain to be able to map
and project the location of the sensation.
In ‘The phantom of the night: restless legs syndrome in amputees’ Guimmarra MJ,et al. conclude ‘Ultimately, restless legs syndrome may indeed be a pain syndrome, and warrants further investigation in chronic pain populations’. So could some RLS sufferers obtain relief seeking a non-central solution? I hope so. I am going to aggressively address my back problem and see what happens. I am buoyed by reports of local remedies for RLS symptoms; hot baths are commonly cited, also compression, stretching, etc.. Although in my case, I think the problem lies between leg and brain – while not exactly peripheral, I still consider it non-central.
Also in ‘Pathophysiology of restless legs syndrome’ Miyamoto M,
et al. who speculated ‘ ...and some patients with sensory polyneuropathy may
exhibit RLS symptoms. RLS symptoms seem to depend on abnormal spinal
sensorimotor integration at the spinal cord level and abnormal central
somatosensory processing.’ So am I correct in thinking that RLS has two
components, but the standard clinical rule is to treat just one?
It is rather curious and perhaps fortunate that I have RLS in only one leg – a
leg that also exhibits significant neuropathy which I believe is tied to my
bulging disc. Over and over I see things on forums and message boards like..’ I
am curious IF ANYONE HAS HAD ANY SPINAL PROBLEMS? I am just throwing this out
there because i had back surgery and my RLS got way worse than before.‘ and ‘I
am now being told that my restless leg syndrome is caused by spinal stenosis.’
even though, as you say, the studies do not seem to be there. How many anecdotes
does it need to uncover a fact? Personally I have definitely noted a correlation
between back pain and RLS intensity.
Unfortunately my HMO simply wants to find the easiest and cheapest way to handle symptoms. Medication. (and more medication for the side effects)
Source
I often wonder... why legs? why at rest? why at night? why so
many widely varying, but seemingly successful, home remedies (psychological
component)? why so many successful medication strategies? The reason is out
there somewhere. One would think that a disease this popular would have lots of
data to mine.
I try to suppress the cynic in me but I hope the profitable management of RLS is
not standing in the way of a cure?
Phil R.
Medical Reply
You are clearly over thinking this issue (which is fine as that
is what most of the research scientists do but they get paid for their work and
have a lot more background knowledge that you lack). Even the very good research
scientists have very diverging theories as to what causes RLS (so you are free
to put your opinion forward but it is likely that only one of you will be
correct and no one can speculate which is best). Here is a few more facts to
help you ponder these weighty issues:
RLS does not only occur in the legs but very often in the arms also and
ultimately can affect any and every body part.
Spinal stenosis does not cause RLS as the vast majority (like over 98%) do not
have RLS and most RLS patient do not have spinal stenosis. Any painful condition
(whether it be spinal stenosis, muscular pain anywhere in the body, etc.) tends
to worsen RLS but the RLS must be present before the painful condition existed.
We now have lots of evidence that most RLS patients have this problem due to a
genetic problem (we have identified genes associated with RLS) and that may
yield much more about the true cause of RLS.
Hot baths, massages, vibration pads, etc. work to help RLS by
counter-stimulation. This is similar to why you shake your hand to relieve pain
after hitting a finger with a hammer. The nerve signals from shaking your hand
(or in the case of RLS, hot baths, massage, etc.) compete with other stimuli to
the brain and since the brain has to process all these signals, it must spend
less time processing the RLS ones (thus diminishing their effect).
There is also a very strong placebo effect with any discomfort/pain problem so
that helps explain why many diverse “home remedies” seem to work for isolated
individuals.
A Reply from Phyl
Sent: Sunday, April 01, 2012 12:40 AM
Subject: Re: perplexed by my RLS treatment plan
Thank you for returning my feet to earth. I am aware and appreciative of all the
hard work being done, and I in no way feel qualified to be critical. I am aware
of, but know I am ignorant of, the large accumulation of knowledge. And I know
the danger of cherry-picking information and clinging on to it in some hope of
relief, and yes, I know I have indulged myself in speculation in part because
the wide divergence in research feeds that indulgence and provides the space for
speculation. I also know the minds propensity for finding patterns that may not
exist. I am just trying to understand how any of this could relate to me.
I have been seen by a seemingly disinterested (perhaps just very busy) neurologist who told me that it has nothing at all to do with my back – no further discussion – take your pills. I respect his knowledge and experience and I am sure there is evidence based protocols driving his decisions. But if general protocols are the hammer, then every case is going to look like nail.
In no way think do I think that spinal stenosis (or any particular back problem) causes RLS. Is it a mitigating factor? I don’t know, but my correlation between my own symptoms in one leg and the intensity of RLS symptoms led me to look and see if any researchers are working along these lines. Although the number of subjects are very few in these studies, there is nothing to say that I would not be in this perhaps atypical group? And on that albeit slim possibility that some relationship does exist, what if improvement in my lower back did result in some improvement in my RLS – perhaps enough to come off the Requip? I have no idea if it will be successful, or even if it is a reasonable idea. But at least I tried and improving my back situation would be a bonus itself. My PCP (an MD) told me that I had too much ‘chi’ in my leg.
What else can I do but over-think?
Phyl R.
Medical Reply
It is very likely that if you can improve your spinal stenosis problem that your RLS symptoms will be reduced. What is interesting is that I have seen many patients will RLS presenting only in one leg (or predominately in one leg) without any other problem with pain such as your situation (or any other medical problem at all). The reason for the one sided RLS symptoms remains completely obscure.
Sent: Thursday, March 29, 2012 10:09 AM
Subject: Peripheral Neuropathy and Restless Leg Syndrome
I emailed in a few years ago. I was told to switch off the Zyrtec to either
Xyzal (newer clean version of Zyrtec) or another anti-histamine. I must take
some form of Zyrtec for severe itching. After trying several different drug
regimens my Nurse Practitioner gave me Xyzal. That is the only thing that works
for the itching. It takes care of about 90% of my symptoms by itself. She also
added Zantac to the Xyzal and I can happily say that I'm mostly itch-free at
this point. And best of all no Restless Leg issues. That is, until I took a
common over-the-counter cough suppressant. Dextromethorphan HBr gives me
terrible Restless Leg symptoms. So bad that I had to use Mirapex the entire time
I was taking the cough suppressant. It was about the worst symptoms I've ever
experienced to date. I'm now very leery of any medications I've not taken before
and many that I have but have not taken since the symptoms initially abated.
The Peripheral Neuropathy has gotten worse as expected. My concern in that area
is that I am now experiencing symptoms in my hands. I still have no diagnosis as
to what the cause is. I continue to use only Ultram for pain relief. It "mutes"
the nerve pain. And I'm still taking usually only one 50 Mg tablet per day, late
in the afternoon or early evening as night time is when my symptoms are at their
worst. Some days are worse than others, of course, and I may take a total of 2
or 3 tablets on a bad day. But the Ultram has been a life saver for me as
nothing else worked for the pain.
None of the narcotic type pain relievers had much effect at all
and Gabapentin made me suicidal. I have a great Nurse Practitioner who is more
than willing to work with me and help me to keep medications to the bare minimum
for pain control issues as well as anxiety and depression. Speaking of which,
she also put me on a low dose of Cymbalta. For the first time in many years I
felt "normal" again. And this has allowed me to cope with my foot and leg issues
much better. Cymbalta has an added benefit of being useful for the control of
certain kinds of pain.
A note on footwear: I've found the only shoes that are comfortable for me
anymore are Crocs. I've been wearing them exclusively for over 2 years now. I
can walk without the kind of pain I was experiencing pre-Crocs and I can say
that these shoes have made a *huge* difference for me.
Barbara J.
Medical Reply
Typically, dextromethorphan does not worsen RLS unless it is combined with an antihistamine. Thus, your response is somewhat unusual. Cymbalta helps neuropathy pain and many other types of pain but may worsen RLS so you are lucky that you did not have problems taking that drug.
Sent: Wednesday, April 04, 2012 9:39 AM
Subject: Lyrica - please let other people know..
I had been suffering for 18 months with what I now know is Multiple Sclerosis.
My first symptom was a feeling in my legs like there I always had to contract or
move to make this feeling go away. But as soon as I did, the feeling would come
back. It was like there were little bugs crawling about an inch under my skin.
My doctor prescribed Lyrica and the feeling went COMPLETELY away. I was so
happy, I could finally sit at work, sit thru a movie, even a simple TV show and
sleep at night! I am the biggest advocate for this drug.
My neurologist sent me to a specialist because she couldn’t help me with any of my other symptoms, and he took me OFF Lyrica and prescribed me Requip because he said Lyrica makes you sluggish. Bull. 3 days later, my legs are doing the same old thing, I feel horrible and cannot make this feeling in my legs go away again. I cant just switch doctors because of my LTD. I hate Requip. I want my Lyrica back. I am even in a program whrere I can get Lyrica for FREE. I am crying. First thing tomorrow I am calling this new doctor. I didn’t even gain any weight on Lyrica and I didn’t feel any more sluggish. I hate this feeling….
Lisa S.
Medical Reply
Not sure why your new specialist took you off Lyrica since it is
a commonly used drug (by RLS specialists) for treating RLS and works well for
most patients. A few patients do get side effects like fatigue or sleepiness but
since you did not experience any side effects, taking you off a drug that is
helping you just does not make sense.
Since your original doctor put you on Lyrica and made you completely better, I
am not sure why he sent you (and why you went) to a specialist for another
opinion when none was needed (and the advice you received was not very good).
Sent: Wednesday, April 11, 2012 1:50 PM
Subject: Re: Help with RLS!
I emailed you several months ago (11/16/11) about the drug Requip for RLS. I
have been taking the drug at 1mg before bed for about 4 months now and it has
done wonders. I fall asleep right away and my legs don't jump. However, I find
myself waking up after 6-7 hours with jumpy legs and not feeling fully rested
about 2 of every 3 days. I was wondering if you have heard of this problem
before. Perhaps the medication wears off after a certain number of hours?
Do you if sometimes people take a second dose or half dose
halfway through the night to help with this issue?
Matt B.
Medical Reply
Requip has a half-life of about 6 hours which means that it will
wear off. Mirapex has a half-life of 8-12 hours which means that it lasts longer
and may work better for you. Usually, Requip at 1 mg is equivalent to .25-.5 mg
of Mirapex.
Another choice is Requip XL (extended release) which also last much longer.
Sent: Thursday, April 12, 2012 7:32 PM
Subject: Treating PLMD and Migraines
I have been diagnosed with severe PLMD after a sleep study last August; I had no
clue this was going on and do not have restless legs during the day. I was on
Elavil (5 mg/day) for sleeping and chronic headaches. Of course the
effectiveness for sleeping wore off after several weeks but it did a great job
of controlling my headaches. After the sleep study I was told by one sleep
specialist to get off of Elavil as it worsens PLMD. After a few months off of
it, the headaches returned and I assumed it was another cluster episode like I
had had a couple years prior that latched on for six weeks; however, this time
I'm into three months of almost daily migraines and so far no medication has
helped (currently on Verapamil 240 mg/day). I'm also on 3mg of Lunesta every
night.
After sheer desperation of an especially bad migraine day last week I started using the Elavil (5 mg) and it is the first thing in three months to stop/lessen my debilitating headaches. It is a miracle drug for my headaches. I am noticing some waking up during the night now with PLMD but the Lunesta lets me get back to sleep quickly. My question is this: Can I take Elavil and something for the PLMD to combat the side effects of the Elavil? Or do I stay away from Elavil at all costs? I know when I tried to increase the Elavil to 10 mg it really made my PLMD much worse and that would wake me up during the night.
The only thing I've used for PLMD is Xanax (.25 mg) at bedtime
in the past but switched to Lunesta after being warned of Xanax's addictiveness
and I'm doing fine with just Lunesta. I cannot tolerate Requip, Mirapex, or
Neurontin. The neurologist I now see wants me to try Keppra next, but the side
effects sound extremely harsh and I'm very drug sensitive and on top of that I
have Chronic Fatigue Syndrome so any drug that makes one weak is not one I can
tolerate.
Valerie F.
Lincoln, Nebraska
Medical Reply
It is very controversial whether or not to treat PLMS. Elavil is
known to worsen PLMS but if you need that medication, then you should take it
(as long as your doctor is ok with that). The only medications that decrease
PLMS are the dopamine agonists (Requip, Mirapex). Sleeping pills (Lunesta,
Xanax, etc.) do not decrease the PLMS but rather keep patients who have PLMS
asleep (or at least back to sleep quickly after being awakened by a PLM). Keppra
is not a medication that should have much of significant effect on PLMS so it
not recommended for that purpose.
Lunesta is likely a better choice than daily Xanax as dependence/tolerance is
much less likely.
Sent: Friday, April 13, 2012 3:37 AM
Subject: Questions about RLS medications
I have had problems with RLS for about 5 years. I am taking Ropinirole 4MG about
2 hours before I go to bed sometimes earlier, if I wait until bedtime it takes
about 2 to 3 hours to work. I have started having RLS problems during the
afternoon, but I have been setting at my desk for longer periods of time. Any
time I sit for a long time the RLS can start. I have also started being so
sleepy in the afternoon I can hardly work. The real reason I’m writing is that
about a year ago I started to have what I call spells- but something like a hot
flash ( I take hormones for the actual case of that) or flushing, I feel sick at
my stomach, sometimes my blood pressure drops and I feel like I will pass out. I
am so sleepy and yawning that I usually have to go to bed.
I feel too sick to do anything anyway. I had thought that some foods or mixtures of things were causing this- I even thought I had Carcinoid Syndrome, but my doctor did a test for that and it showed I did not. I’m now wondering if the Ropinirole has something to do with it.
For the last 2 to 3 years I have also had a problem with
concentration and compulsive behavior. On line shopping almost put me in the
poorhouse. Because I was doing that instead of working for one thing.
The last 6 months I have started gambling. I was always able to go and have fun
with just the money I had, now I get crazy and take money out of every account
I’ve got. I do the gambling only at casinos, but that behavior just was never
like me. The only other thing I can think of that has changed is that about this
time last year I stopped taking blood pressure medicine. My blood pressure has
been under control without it. Any ideas?
Luann
Medical Reply
Unfortunately, ropinirole may be responsible for all your
problems. It can cause sleepiness (even daytime “sleep attacks”), it can cause
drops in blood pressure and of course, it is associated with compulsive gambling
and spending. Furthermore, the earlier onset of symptoms may be due in part to
augmentation (worsening of RLS from taking ropinirole) so getting off this drug
may be a very good idea.
However, once on the drug, getting off it may be quite challenging. Most doctors
don’t know how to accomplish this task and may make it a very miserable
experience.
Sent: Friday, April 13, 2012 5:00 PM
Subject: RE: Moderate to Severe RLS (see previous letter, Tuesday, February 14,
2012)
It took a bit of experimenting, but I finally worked out a program of meds that
got me through the last two months pretty well and I’m ok with the drugs I
think. It’s been pretty amazing how much less dramatic my RLS is after it has
been allowed to go back to the baseline level. It was way past the time for me
to quit the Requip when I finally did.
On April 12th I started Lyrica at 75 mg caps, which I combined with 10 mg of
methadone and another 5 of methadone or hydrocodone (Norco) later, as I was
worried about not sleeping. I’ve only done this two nights and my prescribing
doctor has prescribed 75/150/225/300 over the next 4 weeks with the Lyrica,
cutting back on the methadone as the Lyrica dosage increases, but we really
didn’t talk about the dosage and I don’t want to over cook myself. Is this the
type of progression you usually prescribe and what is it I’m supposed to be
looking for with the relief offered by the Lyrica by the progressive dosing?
Scott A.
Medical Reply
I usually increase the dose of Lyrica somewhat similarly to what your doctor has recommended and I do so on a weekly basis. After a few days on a new dose (you don’t want to change the dose of methadone immediately or you won’t know what is causing side effects if they occur), you can then try dropping the dose of methadone by a small amount (like ½ of a 5 mg tablet) and see what happens.
A Reply from Scott
Sent: Thursday, May 10, 2012 12:14 PM
Subject: RE: Moderate to Severe RLS
OK; have continued to follow the progression and am now up to 300 mg of Lyrica,
but I’m not really feeling much in the way of relief from RLS. As a matter of
fact, it seems that if it wasn’t for the methadone/norco I wouldn’t be getting
any relief, as I’m still getting RLS onset with Lyrica. My local doctor wanted
me to ramp up the Lyrica to 400 or 450 mg, with a potential max of 600 mg, but
now I’m/he’s having a pre authorization battle with Premera, after he tried to
order a prescription, as the first doses to date were from samples.
Have you had the same difficulties in California? If Premera won’t authorize the prescription of Lyrica, have you found it easier to get pre authorization for prescriptions of Horizant?
Scott A.
Medical Reply
The maximum dose of Lyrica in the evening is 300-450 mg.
Additional doses may be given earlier in the day with a daily maximum of 600 mg
(but not in one dose). If you have not received much benefit from 300 mg, it is
likely that increasing the drug much more may not be helpful.
Horizant may be more readily covered for RLS as it is FDA approved for use in
RLS while Lyrica is not FDA approved for RLS.
A Reply from Scott
Sent: Friday, May 11, 2012 9:51 AM
Subject: RE: Moderate to Severe RLS
If I were to go the Horizant route, what is your typical dosage and is there a
progression you usually follow, as with the introduction of Lyrica?
Scott A.
Medical Reply
Currently, Horizant is only FDA approved for once daily use at 600 mg. However, if that is not helpful enough, I do increase the dose to 2 or even 3 tablets (after at least a week or two on the lower dose) if needed. The only problem is that the insurance companies may not approve doses higher than the FDA approved one tablet daily.
Sent: Sunday, April 15, 2012 5:55 AM
Subject: follow up
It has been some time since I last wrote the RLS group , 2009 to
be exact, and I have been lucky to have learned to manage my RLS without the use
of medications (for the most part anyway), up until a few weeks ago.
Some background . When I first wrote to you back in 2009, I was taking 4 plus
milligrams of Requip and was suffering severe augmentation. Having read numerous
emails other fellow sufferers had sent you, I knew getting off the drug was
going to be hell, unless I could find a doctor to prescribe either oxycodone or
methadone to get me thru the transition period .
Unfortunately I ended up with a neurologist who was not RLS
savvy , and insisted I go on clonazepam before considering using the opiates.
Big mistake since all this did was turn me into a benzodiazepine addict for 6
months, till I finally weaned myself off this horrible drug. When the clonazepam
failed to work, I was able to get a prescription for oxycodone which allowed me
to manage my RLS, while I worked thru getting clonazepam out of my system. While
on the clonazepam I was suffering severe depression, so my psychiatrist
prescribed two drugs which I take to this day , Wellbutrin and nortriptyline. I
had read that these 2 antidepressants were not known to make RLS symptoms worse,
since they worked in the dopamine area of the brain, so I felt fairly safe in
taking them.
I was taking the oxycodone at the rate of 7.5 mg. per night along with the
Wellbutrin and nortriptyline , was completely free of the Clonazepam , and my
RLS symptoms were under complete control. My fear of addiction to any drug made
me determined to get off the opiate, even though taking 7.5 mg of the oxycodone
per day presented little risk of addiction.
With the help of the book” the RLS Rebels Survival Guide” by Jill Gunzel, I did
manage to learn to handle my RLS without the opiate which I do to this day. I
continue to take the Wellbutrin and nortriptyline because all in all my daytime
symptoms have completely disappeared and I find I can drive a vehicle or ride on
a plane for far longer periods of time than even when Requip was working its
best. I have no idea if the two antidepressants are responsible for this, but I
am proceeding on the belief that since they work in the dopamine area of the
brain, they may be partly responsible for the good results.
Now the reason for the follow up letter . About 4 months ago I was put on the
blood pressure medicine, lisinopril, and there seems to be some relationship
between this medicine and my symptoms increasing slightly during the evening ,
making it harder for me to fall asleep before the symptoms get the best of me. I
am dealing with it, but recently read that some blood pressure medicines are
known to increase RLS symptoms.
I plan to continue a non medical approach to my RLS control, and I will continue
to need a blood pressure medicine, but don’t want to add any fuel to the RLS
fire that I don’t have to.
Are you aware of any of the blood pressure medicines that are
prone to do this, and if so do you have a list of the good and the bad , or is
there a list out there that I can bring up that would tell me if lisinopril is
indeed a problem?
John
Medical Reply
Not only is there no evidence that lisinopril or any other blood
pressure medication for that matter, has any effect on RLS, I have many RLS
patients on lisinopril without any issues. Therefore, it is either coincidence
(like something else is happening to cause this problem) or you are having a
very unusual reaction to the drug.
Wellbutrin does have some dopamine effect but it typically is not enough to
improve RLS (more importantly, it does not worsen RLS). Nortriptyline does not
have any dopaminergic effects at all but rather has fewer serotonin effects and
thus tend not to worsen RLS like other antidepressants.
Sent: Saturday, April 21, 2012 7:53 AM
Subject: Re: RLS
I have been taking Requip for over two years and the dosage to maintain comfort
has increased from 4 mg to 6 mg daily. It works. However when it wears off the
symptoms are more acute and disturbing. Also if I don't take it on time--let it
wear off I get really painful muscles aching in my shoulders and feel generally
awful--like "withdrawal" symptoms from drugs. I haven't taken or been withdrawn
from drugs or alcohol so I don't know how to describe my feelings-- but reading
the symptoms my discomfort when I don't take my Requip on time sound similar to
withdrawal.
Margery W.
Medical Reply
What you are describing sounds like augmentation which is a
worsening of RLS due to taking a dopamine drug like Requip. If you increase the
Requip dose, you will get relief for a while (a few months or possibly even a
few years) but ultimately the RLS symptoms will most likely worsen and you will
require increasingly more of the Requip.
The treatment of augmentation is not well known for most doctors (you can read
about it on our website as there are many letters on this topic with lots of
advice) but it typically requires getting off the Requip. That can be a tough
process and potent opioids (like methadone or oxycodone) are usually needed (and
most doctors are not knowledgeable on how to do this and are also not willing to
prescribe these potent medications).
Sent: Monday, April 23, 2012 6:55 PM
Subject: Desperately need gabapentin-Horizant crossover information
I was diagnosed by Stanford University Sleep Clinic with early-onset RLS and
severe PLMD some 15 years ago. I cannot take the dopamine agonists, and was
prescribed clonazepam, gabapentin, and Ambien. 8 years ago I developed tolerance
to the benzodiazepines and was forced to taper off both the clonazepam and
Ambien. I now take gabapentin (900 mg) and oxycodone (10 mg), both at bedtime. I
also take an iron supplement, which was immensely helpful for a while (serum
ferritin went up from 33 to 90.)
Over the past few months I have been developing withdrawal-like symptoms in the
late afternoon -- sweating, hot/cold flushes, whole body akathisia. We have
tried various strategies to determine the cause of these symptoms, and the one
thing that appeared to have significant effect was to split the gabapentin into
3 daily doses of 300 mg each. This suggests one or both of the following (I
suspect the second):
1. I am experiencing some form of gabapentin inter-dose withdrawal
2. the RLS is worsening (sleep quality is also deteriorating) and augmenting
I would like to try Horizant, but cannot find any information about crossing over from gabapentin to Horizant. Neither my doctor nor pharmacist has even heard of the drug. The prescribing information for Horizant says: "HORIZANT is not interchangeable with other gabapentin products because of differing pharmacokinetic profiles. The same dose of HORIZANT results in different plasma concentrations of gabapentin relative to other gabapentin products." Since the plasma product of both drugs is gabapentin, I can't think of any reason why I should have to endure a gabapentin taper/washout before I can start Horizant.
Do you have patients who have gone directly from gabapentin to
Horizant? Would 600 mg Horizant represent a dose reduction from 900 mg
gabapentin IR? (I suspect it is actually an increase...)
Deb E.
Medical Reply
The problem with trying to figure out your problem with RLS on
your own is that despite your extensive research (which is impressive), it is
very difficult to figure out what is going on without knowing a lot more (than
even most doctors or specialists) about RLS and RLS drugs.
There is really no such issue as gabapentin inter-dose withdrawal and
augmentation does not occur with the medications that you are currently taking.
Your RLS may be worsening but why and if that is happening would have to be
investigated.
One can go from gabapentin to Horizant the next day. The comparison between
gabapentin and Horizant is very complicated for many reasons. Horizant at 600 mg
actually turns into 300 mg of gabapentin as it has a side chain (that helps it
get absorbed much better than gabapentin) that is cleaved off as soon as it
enters the blood stream which then turns the drug into gabapentin (and that side
chain when cut off reduced the weight/amount of gabapentin by 50%). Despite
being converted to only 300 mg (actually 313 mg) of gabapentin, a much higher
percentage gets absorbed compared to 600 mg (or even 900 mg) of gabapentin and
last longer due to the extended release formulation. The amount of gabapentin
that gets absorbed varies markedly from person to person so we don’t even really
know how much you are getting from your current dose (and the higher the regular
gabapentin dose taken, the smaller percentage of it gets in which is not the
case with Horizant which is very predictable).
A Reply from Deb
Sent: Tuesday, April 24, 2012 9:41 AM
Subject: Opioid constipation
I see so many people struggling with the constipation side effect in your
patient letters, I thought I should chime in with what works for me.
I've been on opioids for 15 years for my RLS/PLMD. I've had constipation issues
since I was a baby, and grew up on "Milk of Magnesia". When I had to start
taking opioids for my refractory RLS, the constipation side effect was awful.
Finally it occurred to me to try a magnesium supplement. It worked like an
absolute charm! I take anywhere from 500 to 750 mg magnesium oxide (the oxide
form is important) daily and have no problems at all.
A side benefit of magnesium supplements is that they also lower blood pressure.
Hope this helps a few other folks!
Deb E.
Medical Reply
We also suggest high fiber, Colace (or other stool softeners) and for tough cases, MiraLax typically works very well.
Sent: Wednesday, April 25, 2012 12:53 PM
Subject: Requip rebound
How do I manage to take Requip without it becoming less effective and requiring
stronger doses? I am on a low dose now and sometimes need Ambien in early
morning hours when I wake up and can't get back to sleep.
Martha
If you are having early am RLS symptoms it means that the Requip
dose is not lasting long enough. Are you taking it earlier in the evening to
take care of evening RLS symptoms? If so, you can only expect the Requip dose to
last about 6-8 hours (at best). To treat this problem you would need to take a
very small extra dose just before going to bed. Another alternative would be to
change to Mirapex which has a longer half-life and typically provides another 2
hours of RLS relief.
You might also consider changing to Horizant which is quite different from the
dopamine agonists above and may also help promote deeper sleep.
Sent: Friday, April 27, 2012 9:49 PM
Subject: Problem with my RLS medications
I have had RLS for years, I take Mirapex, then after a while that wasn't
working, I had some surgery and while taking Vicodin, I didn't have RLS, my dr.
gave me a prescription for that along with the Mirapex, had more surgeries, then
got fibromyalgia and anxiety until sometimes I am in such a state I don't know
what to do, have taken hot showers in the middle of the night, now I'm taking
Mirapex, Vicodin, Xanax, and Ambien just to get some sleep and relax. I know
that is a lot of drugs, but without them I would be a mess...and at age 75, I
don't care if I am addicted to them as long as they help and I can get some rest
and feel half way OK.
Jan W.
Medical Reply
There are several issues concerning your case and treatment. It
is reasonably possible that you are having augmentation (worsening of RLS from
taking Mirapex) from your Mirapex and staying on that drug may slowly continue
to worsen your RLS. If that is the case, then getting off this drug would be
suggested but that is difficult to do without worsening your RLS temporarily
(few weeks or months).
Xanax and Ambien do not help RLS but do help RLS patients sleep particularly
when the RLS treatment is inadequate. There are several other medications for
RLS (like Horizant which is also approved for treating RLS) that may be better
choices and help you sleep. We do use opioids to treat RLS when necessary (they
are the last resort drugs to be used) but Vicodin contains acetaminophen
(Tylenol) which does not help RLS so could only cause side effects (low risk,
but why take any when not necessary?) and therefore the more pure opioids
(oxycodone, methadone) are preferred.
Sent: Friday, April 27, 2012 11:39 PM
Subject: PLEASE HELP!
I am a 42 year old woman who has severe RLS. I have gone thru a lot of medicines
to try to help this throughout the past 15 years. The only thing that has been
working for me is Requip. I've been on it for years and now am not getting the
same relief I used to. I tried Mirapex with no relief and Klonopin, etc....The
only thing I've never tried are any type of narcotics.
I've been doing a lot of research on RLS and went to the doctor who handles my other medications asking if I could try a combo of the Requip and Tramadol. It worked for about 2 days and then I started with hives, swollen tongue, EXTREMELY dry eyes and mouth, etc. I called my doc and he said to stop taking it and go see my General Practitioner. I called my GP who then told me I needed to go back to a Neuro doc. I called my old Neuro doc and they are going to see me on Wednesday. I explained to the nurse the problem with the Requip not being enough for relief and she said that they frown on giving out Narcotics.
I do not have a history of Narcotic use at all. I am also taking
Gabapentin for a nerve problem in my jaw. She said that this should be enough.
I don't know how to explain to the doctor how severe this is for me. It gets so
bad, that I get not only the "lightning flashes" under my skin and the "creepy
crawlies", but I also get severe Charlie horses all the way down to my foot.
I've tried almost everything I can think of and found your name highly
recommended on the RLS.org site.
Theresa N.
Medical Reply
This issue in your case is that you are most likely experiencing
augmentation from Requip (a worsening of your RLS due to taking a dopamine like
Requip or Mirapex). Increasing the Requip will give you temporary relief (weeks
or months) but will eventually cause the augmentation symptoms to get even worse
(like adding fuel to the fire). Most neurologists are not that aware of
augmentation and typically just keep increasing the dopamine agonist until the
patient gets desperate for relief (if you read the letter on our website, you
will see many with your exact complaint).
The treatment for augmentation that is severe (like your case) is to stop the
Requip/Mirapex. This will markedly worsen your already severe RLS for several
weeks or longer. Only potent opioid therapy is up to treating this problem. If
you neurologist does not want to treat you appropriately, you must find another
specialist who is more knowledgeable and willing to treat you correctly. If the
dosage of opioids are kept within reasonable limits and monitored closely,
tolerance, dependence or addiction should be a rare event (there is lots of
clinical experience and even medical studies to back up this claim).
Paxil makes RLS worse and you might want to consider a change to Wellbutrin
which is one of the few antidepressants that does not worsen RLS. The irregular
leg movements are most likely PLM (Periodic Limb Movements) which are present in
over 85 % of RLS sufferers and should not be treated with propranolol. They are
either not treated or the dopamine agonists or anticonvulsant drugs
(Horizant/gabapentin) take care of them.
With proper treatment, there is an excellent chance that you should get complete
relief of your RLS symptoms with minimal or no side effects.
Sent: Monday, April 30, 2012 8:13 PM
Subject: Requip XL for RLS?
I just wanted to share some of my experiences with RLS/PLMD. Mine, thankfully,
is under control nicely. I am 55 and have been on medication for over 10 years.
What worked best was Requip (3 mg) but it made me feel terrible and eventually
was not working thru the night. I could not lay down and take a nap or had the
luxury of staying in bed if I had the flu, etc. I knew that with other meds I
had taken down that the extended release version seemed to have less side
effects so I asked my doctor if that might work for me. Did it ever.
I can take it at 7 pm and not only do I feel fine but now I can
take naps, etc. All of the things I couldn't before. Another thing I noticed
with mine is that any change in diet, be it for the better or worse, will make
mine worse for a few days. I drink coffee and have a horrible sweet tooth but if
I cut out the caffeine or sugar suddenly, that will kick it off just as
introducing those things back into my diet will. Mine may not be be a typical
case, I know codeine is supposed to help but it drives my legs crazy, but I hope
the Requip XL might help someone else.
Cindy in Oklahoma
Medical Reply
We do use Requip XL and Mirapex ER often for RLS even though
they are only approved for Parkinson's disease. They often work better than
multiple doses of the immediate release preparations. Getting worse with codeine
is quite unusual but many RLS patients do weird things with drugs.
The Neupro patch will be available in July and releases its dopamine agonist
(rotigotine) every smoother than does Requip XL. Furthermore, it is approved for
RLS so if you have trouble with the Requip XL (getting it covered or lack of
effect), the Neupro patch may be a good alternative.
Sent: Thursday, May 03, 2012 5:21 PM
Subject: RLS and Sinemet 25-100 mg
I have been taking the above for several years (about 7 years)-- (1/2 pill)
every night for RLS and it has worked wonderfully almost every night. There have
only been a few nights when it has not worked. I never go over the ½ pill
because I am afraid of “augmentation”. I also use it if I have to sit in a
meeting for over 1-1 ½ hours. It works great for that also, or on an airplane.
My doctor at the time told me that Sinemet was just as good as the commercial
RLS pills and much cheaper.
I am 69 years old and I am very grateful for the relief I have
had for the past several years!!! I still seem to need to sleep about 9 hours
per night, and the pill allows me to do so.
Sandra R.
Medical Reply
You are correct about keeping the carbidopa/levodopa dose as low as possible as higher doses (not too much higher than yours) results in augmentation of RLS in more than 90% of patients.
Sent: Saturday, May 05, 2012 8:05 PM
Subject: RLS
To make this as brief as possible, I will skip my childhood RLS experiences,
teens, and twenties. My mother had RLS and both of my boys have it. During both
pregnancies in my early thirties, I was able to control the RLS with calcium
supplements and occasionally, under desperation for sleep, a 1/2 Valium. (I
know--bad for the baby. Fortunately, they are both healthy and very
intelligent). After pregnancies I began taking Klonopin and returned to my
pre-pregnancy weight of 130-140 lbs. I took Klonopin for a couple of years and
it quit working.
Fast forward to when Mirapex first came on the market, probably 13 or 14 years
ago. What a relief! It was a wonder drug! I started out with .125 and quickly
advanced to 1 mg, then two, etc. Now, at 62, I take a 3 mg. long acting Mirapex
and .5 to 1 mg depending on my need-- whether or not I have rebound, RLS in my
torso and arms, etc. I have tried several times to wean myself with Lyrica,
gabapentin, Requip, all the other usual RLS drugs, with no avail. I also tried
hydrocodone and oxycodone. Neither of these helped the RLS and the hydrocodone
gave me a rash and headache.
Desperate for sleep, I relapsed to the Mirapex. During the time since I have
been taking the Mirapex, my compulsiveness for eating has increased. I now weigh
245. I also have a compulsion to sewing. I must sew something every day. I guess
this is a good thing. At least I'm not spending compulsively. Another compulsion
that I never had before and have never told anyone was viewing things on the
internet that I should not--this is very shameful for me. I have been trying
very hard not to do this and have been much better lately. But this deep dark
secret is very disturbing to me as I am a 62 year old woman!!!
I desperately need to get off the Mirapex. Reading about the new Horizant
reminds me when I read about the "new" Mirapex. But, I am willing to try it if
it means I can wean myself from the Mirapex. I am wondering if Percocet would
help. I have a 90 year old friend who takes Percocet for her RLS. It works for
her. Is Percocet in the same family with hydrocodone? Would it hurt my liver? I
also have other health problems. I have non alcoholic cirrhosis, diabetes II,
high cholesterol and have recently had other autoimmune testing done that showed
many symptoms of Lupus, but do not take any medications for it as of yet. I do
not drink caffeine, alcohol and have never smoked.
I was seeing a very prominent RLS doctor but I will not return to him because he
talks down to me and makes me very uncomfortable, even though I started out with
him many years ago. I loved his PA who helped me with the withdrawal, but she
left his practice. There are numerous RLS specialists in my area, but I am
hesitant because I have such a complicated case of RLS that I don't know who has
the experience and who doesn't. I have been to two who wanted me to quit Mirapex
cold turkey. I knew better and practically ran out of their offices--twice! And
they were supposed to be RLS specialists!
LB
Medical Reply
You are suffering from augmentation (not rebound) due to your
Mirapex. The problem will only get worse with continuing or increasing the
Mirapex. Dr. Becker should be able to help you with that problem.
Percocet is just oxycodone with Tylenol and since you have tried that before, it
may not be helpful. If one or two opioids do not work, we just keep trying other
ones. Methadone is currently the opioid that most of us experts use the most as
it seems to work the best with the fewest side effects. Horizant may be helpful
to reduce or eliminate the dose of opioids once you have been off Mirapex for a
few months but it is not sufficiently potent enough to help you on its own.
You should not be ashamed of your compulsions as they are being driven by the
Mirapex and are extremely difficult to control. You must get off the Mirapex so
that you don’t continue to gain weight and of course it will eliminate the other
impulse control disorder (ICD) issues (you may still want to sew but likely not
every day).
Sent: Sunday, May 06, 2012 11:30 AM
Subject: Question about Tramadol, Vicodin, Hydrocodone
I am currently taking Requip for RLS (3/4 mg at supper and 2 mg at bedtime). I
was at 1.25 for a long time, but after I retired, my symptoms increased greatly.
I tried the new Horizant, but it did not work for me. Neither did Neurontin or
any of the other common remedies. I'm 60 years old, and I hope I don't get
another surge of symptoms. Because I've heard that 4 mg is about the most you
can take of Requip.
You have mentioned Tramadol, Vicodin, and Hydrocodone as alternatives.
I was able to try each of these for a couple days, because I've had them prescribed for various dental and sinus problems. Each of them seemed to work pretty well for the evening hours. But I've heard that there is a danger of physical dependency. If so, how does one safely take one of these drugs? I certainly don't want to add drug addiction to my RLS. I know that you sometimes prescribe these drugs. So there must be a way to use them safely. Thanks so much for your help.
Ed M.
Medical Reply
Although tramadol and Vicodin (this contains hydrocodone and
Tylenol) help RLS, they should only be taken when prescribed for RLS by a doctor
who Is knowledgeable on treating RLS. Typically, you don't want to use products
that contain Tylenol on a regular basis as the Tylenol does not help RLS so can
only cause side effects in the long run (low risk, by why take a chance?).
These drugs should be used at the lowest possible dose and are often combined
with other drugs to help keep the dose down. With proper dosing, monitoring and
supervision, tolerance, dependence or addiction should be rare events with these
drugs.
Sent: Sunday, May 06, 2012 8:48 PM
Subject: Klonopin or Requip for RLS?
I spend 6 months in one state and six months in another. I have been diagnosed
with RLS by a neurologist and both of my primary care doctors in each state..
They disagree on treatment. One advocates Klonopin, the other Requip. It becomes
a problem on office visits. Which is a better drug for RLS?
BJW
Medical Reply
Although older (like 10-15 years or older) textbooks list
Klonopin as one of the drugs of choice for RLS, that is no longer the case and
most RLS experts (including me) do not use that drug to treat RLS. Not only is
Klonopin not FDA approved for treating RLS, it actually does not relieve RLS
symptoms but only helps RLS patients fall asleep (similar to what it would do
for someone with back pain who can’t sleep).
Requip (FDA approved for RLS) is still considered as one of the drugs of choice
for moderate to severe RLS (you must have RLS almost every day and severe enough
to affect your life). Another choice is Horizant, the newest FDA approved RLS
drug.
DISCLAIMER
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 RLS symptoms.
If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
To receive a response to your email letter, please use complete sentences with correct spelling (use your spellchecker), punctuation and grammar. Avoid abbreviations (do not use Dr or doc instead of doctor or yrs instead of years), incomplete words and do not use ALL CAPS or no capitals (like i instead of I or for the first word of a sentence). Email letters that do not follow these rules will not be read and will not receive a response.
Click to go to the RLS Homepage, RLS Treatment Page
Source: Southern California Restless Legs Support Group,
Patient Letters and Medical Answers Section, Page 100.
http://www.rlshelp.org/rlscomp100.htm
This web site was last modified on
Saturday, May 12, 2012.
Cartoon above was created and drawn by Robert Van Den Berghe.
All material on this web site is Copyright © by the Southern California RLS
Support Group, 2011.
