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Sent: Saturday, September 07, 2002 12:04 AM
Subject: RLS
I have had RLS since the age of 6. After many misdiagnosis over
the
years I had the great advantage of getting a job in a sleep lab as a
technician. I soon realized from my patients and delving into information
on
the subject that I indeed had been suffering from severe RLS most of my
life.
I have been treated fairly successfully for the last 4 years on a combination of Mirapex and Ativan. Currently I am on 1.25 mg of Mirapex and 4 mg. of Ativan which is all taken at bedtime. I have no insomnia from the Mirapex but I did develop severe dry eye syndrome.
Recently I am having much more problems with the RLS. Symptoms are constant all day, sleep deprivation has returned and also experiencing lower leg cramps, something I never had before. My primary physician says I cannot increase the Ativan and my sleep specialist says I can increase my Mirapex to 1.50 but no higher than that.
I am wondering what route would be best to try next as far as medication. I am leery of Requip as my stepfather is on it for Parkinson's and he has very bad hallucinations with it. Is there any medication that would work without further drying out of my eyes? Would increasing the Mirapex up more continue to cause more problems with the eyes?
I am 44 years old and I know the RLS will worsen with age. I am worried about continuing to keep it in control.
Thank you for any suggestions.
KM,
Arizona
Medical Reply
The dose of Ativan that you are taking is very high and it is likely that you are getting tolerant to the dose. Once your RLS is under control, you may want to consider tapering off of the drug and using Ambien on a as needed basis only. You are getting to a high dose of Mirapex and sometimes a change to Requip might be helpful (you need double the dose of Requip in mg compared to Mirapex). If that does not work then adding a pain killer (a narcotic or Ultram, or even alternating the two) can be very effective and safe if done correctly.
Medical Reply
I have taken Sinemet and am not impressed. It helps sometimes and sometimes not. A few weeks ago, I had a nagging cough and my doctor prescribed a cough medicine with codeine. After taking the cough medicine about a week I noticed I didn't have the RLS and when I stopped it came back. Is codeine good to take indefinitely?
Medical Reply
Narcotics help RLS in almost all RLS sufferers. It is an addictive drug so we prescribe it only when the other drugs do not help. My suggestion would be to have your doctor prescribe Mirapex or Requip (increase to the lowest dose that eliminates your RLS problems).
If you are still having problems with your RLS, then adding a narcotic would be appropriate. Codeine (Vicodin is better) can be used and alternated with the non-narcotic pain killer Ultram.Thank you,
Kenna H.
Medical Reply
Weight gain has been seen very occasionally with Mirapex. If increased exercise (which should be possible with you sleeping better) and decreased food intake does not help, then a change to Requip possibly might help.Medical Reply
I was wondering if nicotine had any effects similar to alcohol or caffeine. The other obvious health aspects aside, does a cigar after dinner exacerbate RLS symptoms?
Thanks.
Medical Reply
I have never communicated prior about RLS to other than medical doctors. However, doctors from local to the National Health Institute in Bethesda have not been responsive to the following questions:
1. Have any RLS individuals expressed a strong desire to eat when
bothered by pain during the night?
2. Is there data which represent categorical areas such as morose
feelings, weight gain or loss, divorce, other blood related family RLS members,
etc.?
3. Has any person tried, suggested, written on marijuana as a reduction of
nighttime pain?
4. Have MRI's and X-Rays (spinal chord) been done or used in the study of
RLS?
Thank you for any assistance and answers you may be able to provide.
Sincerely,
Jim L.
Medical Reply
1) Many RLS sufferers have gained weight as the RLS keeps them up at night and eating is one of the few activities available.First of all, thank you for maintaining this web site. For years I had "jumpy joints" without knowing what it was. It can drive a person crazy! Your site has helped me in two ways. First, it proves that RLS is real and that many people have it, many worse than me, Second, it shows that RLS can be treated.
Given other people's experiences I believe my case of RLS to be moderate - not severe, but not mild. I have had RLS since my teen years. My mother, who also has it, calls it "jumpy joints." To get to sleep, usually I can contort myself in such a way that enough relief comes to get to sleep.
Additionally, I have Acid Reflux and have worked with doctors about thirteen years to solve the problem. I've tried lifestyle changes, numerous drugs, and even the Nissen surgery. While experiencing some improvement, I have found nothing to solve the problem like GRAVITY. Sleeping sitting up or at an angle is the only real cure.
The problem is that when sleeping sitting up or at an angle, I cannot get into a position to relieve my RLS. After some experimentation with Ultram, I have found it to be a great cure. It relieves the RLS enough to sleep sitting up. Some nights the RLS is completely gone! I have been taking 100 mg an hour or so before bed.
My question has to do with drug holidays. How long do they need to be? You say two days. Is that 48 hours or skip two nights? I have been going 5 nights on, two nights off. Quite honestly, since starting this, the RLS seems worse than ever during the drug holidays. I sleep, but fitfully, waking often, and worse, my stomach hurts greatly.
I am 37, male and have a fast metabolism. Thank you so much for what you are doing. It is a real service to many people. God bless you!
Medical Reply
Ultram is a very good RLS medication for many patients. Drug holidays with this drug (or any drug for that matter) are not well defined. I generally suggest 2 consecutive days off (usually the weekend as not sleeping as well on your own time is not as bad for most).
Other strategies include alternating Ultram with a narcotic (which can be done every few days or weeks). Another better idea is to try Mirapex or Requip which would eliminate the need for Ultram or narcotics and avoid the need for drug holidays.I have PLMD without RLS, have been taking Mirapex for several years, and began to suspect that I might be one of those individuals who can develop augmentation with Mirapex. I decided to switch to Requip and asked how much I should take to get equal results. The guidance I got was to take 2X-3X that which I had been taking with Mirapex, which would have been 1.0 mg-1.5 mg, taken 2-3 hrs before bedtime, plus half that amount mid morning and again mid afternoon if I had my jerks while at rest.
To make a long story short, I tried 2X for 3 nights, then 3X for 3 more nights, then 4X (2mg) for 2 more nights before giving up. During none of those 8 nights did I get more than 3 hrs sleep! Now I have read in your Treatment Page that one can titrate up to 3mg, 3 times a day AND even up to a total of 24mg per day! At the most I had taken 2+1+1= 4mg total, MUCH less than what you state.
QUESTION: At some future time I want to try Requip again and I am frightened to go too far without your advice. Forget about 4X !! Where should I start and what would you feel would be enough without going too far? The advice I had this time came from qualified medical personnel, which must go to prove that there is too little known about the Mirapex/Requip relationship.
Let me add that, since I have gone back to my 0.5 mg at night, I have
gotten almost complete relief from PLMD, with no problems during the day and
very little at night. Apparently my trial paid off -- I had indeed
experienced augmentation with Mirapex, and a drug holiday paid off! That in
itself is worth knowing.
Newt H,
in Oregon
Medical Reply
I am writing of my experience this past week in hopes that it will help someone else. I have been taking Dilaudid successfully for over a year for my severe Restless Legs Syndrome. I have taken the regular Dilaudid as well as two different generic brands in the past. Last week the pharmacy gave me a third generic brand. It did not work at all.
I tried alternating with a few tablets of regular Dilaudid that I had left until it became obvious that THIS generic was useless. Either I have forgotten how bad my RLS was or it has since gotten much worse because I had two nights of pure torture.... and finally just lost it for several hours.
My other real problem was that the pharmacies apparently cannot take back ANY medications - at least not in this state. So, seeing as I was on a controlled substance, and they would not take it back, I obviously could not trade in my pills. It took two days, eventually contacting two different doctors, in two states, before a solution was finally worked out. I took the pills to my family doctor and he gave me a new prescription that said "no substitution".
Now my question is: Seeing as I have taken other generics of this drug without problems, is it me that the drug doesn't agree with or is there something wrong with that form of the medication? Seeing as the pharmacy will take NOTHING back - how do the drug companies ever find out that they are manufacturing a mistake? Obviously, the drug companies and pharmacies do not have to PAY for the mistakes when they occur - the patient has to pay to replace the pills. Where is the quality control?
Barbara/63/Oklahoma
Medical Reply
Medical Reply
I have decided to keep this support memo short and to the point. I have been taking MIRAPEX for 3 years now for RLS. When my legs begin their aggravating symptoms, I immediately take MIRAPEX (start low and work up to what you need - it shouldn't take much). My understanding is that MIRAPEX is used by Parkinson's patients - which intimidated me at first.
Then I realized a lot of medicines eventually are found to help many different ailments. You need a prescription to get Mirapex, but if you want to sleep tonight - all night - then PLEASE try this medicine.
Carla J.Is there any treatment. or anything I can do or add to my Sinemet treatment to make this trip bearable?
Medical Reply
My husband and I have a very tranquil lifestyle and I have found when that becomes disrupted ... such as stress due to too much company, perhaps a disagreement with someone etc. my RLS is worse. Do you think emotions can 'trigger' the problem? I attended a RLS support group in Portland, Oregon for awhile but don't feel comfortable driving in heavy traffic any longer so had to give that up.
Medical Reply
I'm being treated with Sinemet for the last 2 years now and doing great. It took a long time before getting treatments because I was afraid to tell my doctor about my symptoms thinking they would think I was crazy...I'm 41 yrs old and had RLS now for at least 10 years. But the last 2 years before taking Sinemet was hell on earth. In the evenings after sitting for an hour of so, the legs jerking and twitching started and had to move and walk to relieve the creepy crawling sensations in my legs.
I could never watch a movie, or sit long enough with company .I would dread visiting in the evenings. Did anybody ever watched television walking around the living room....And sleeping was next to impossible, I would fall asleep and wake up after only an hour of rest and pace the hallway (and even thinking of going outside for a walk) for the rest of the night... I would only get 2 to 3 hours of sleep every night....
I'm glad to have found your web site . I have a daughter that I'm sure will probably inherit RLS. But at least now we have some help and it is recognized. It brought tears to my eyes just reading the letters. I could relate so well to all those people. My dad has RLS and he is being treated also.
I'm happy to sleep and to enjoy life once more...
Just hoping that the medication I'm taking will continue to have the same effect.
Pierrette
Medical Reply
I have been taking .5mg Mirapex for the past year with good results for RLS. but it has been giving me gastritis all during that time. I am now taking Prevacid and it is helping. Is this a common problem with Mirapex? Will I probably need to continue the Prevacid while I am taking Mirapex or might the problem go away?
It is very discouraging to have this and also the Mirapex makes my muscles ache sometimes. I am exercising, taking Tums and Prevacid. then when I stop Mirapex for a few days I feel twenty years younger. But I suffer for it at night. Someone also suggested in the RLS support group at yahoo.com that Prevacid can cause RLS or make it worse. Is this true?
D. Thomas, age 51
Medical Reply
In any case, I have to get up and walk around my house. It's the only thing that works. Shaking my legs, tensing the muscles, both are pretty much a waste of time and energy. I recently started taking B complex, vitamin E and soy with calcium. I'm thinking about trying valerian, Does anyone have anything good to say about it?
Thanks for being here. I was beginning to think I was absolutely wacky.
Patti
Medical Reply
I was taking Sinemet for RLS. I stopped taking it when I became pregnant. I am now breast feeding. I have had very little sleep and I work full time. I am concerned about being sleepy while driving and at work. Is it safe to take anything while I breastfeed. I would like to wean my baby but he takes very little formula from a bottle and is in 5th percentile for weight and 95th for height.
I take iron and am not anemic. I don't really kick much but I twitch and just can not make to that deep sleep. I sleep for maybe 20 min at a time. The rest of the night I just lay there and rest
Thanks,
L.
Medical Reply
I am a 45 year old female with a family history of RLS. I have suffered from this for as long as I can remember. When I was young it would occur from time to time, but now that I am older it plagues me every night and some times during the day. I have asked doctors about this problem at different times and have been looked at like I was not all there, been put on Quinine and Klonopin?).
A few years back my husband started complaining about my snoring. He has been very patient about my RLS. The snoring has been getting worse and both of us have been suffering from lack of sleep now. At a doctor's visit for my yearly examine I told the doc. just how exhausted I have been. (I did not complain to him about my RLS as he was the one who put me on Quinine.). He sent me to a sleep disorder clinic and I had a sleep study done in August 2002.
My initial visit was in July 2002 and the doctor confirmed my RLS, and put me on Mirapex?) 0.25 mg. What a miracle! It lasted for a month and then I had symptoms again. He increased my dose to .5 mg before bedtime and so far so good. My sleep study in August 2002 confirmed the RLS but I also have moderate sleep apnea and am awaiting another sleep study to see if a CPAP machine will help. Also had a Ferritin test and my Iron was at 30 and the doctor said it should be at least 50.
I am on Iron now and will be tested again in 6 months. Please excuse my spelling of the drugs and the test. Is it common to have more than one sleep disorder? Also do you know from experience if I will have to increase my Mirapex again?
Thanks for your help,
Lynn, Arab, AL.
Medical Reply
Both sleep apnea and RLS are common enough disorders so it is not too uncommon for them to overlap in the same patient. I have many patients with both disorders at the same time. Tolerance to Mirapex does occur, in which case increasing the dose usually does the trick. If however, you need to keep increasing the dose at short intervals, then a change to Requip or other class of RLS drug may be necessary.
Sent: Saturday, September 28, 2002 12:44 AM
Subject: RLS
I was just recently diagnosed with RLS.
I have been disabled for three years from Degenerative Disk Disease,
Arthritis ( of the spine ), and also stenosis. I am 52 years old. I
had pain in the right leg, down the thigh following along the path of
the femoral nerve. I would, on and off, get those , what I call excited
feelings ( or butterflies in my legs. ) The pain in the right leg is
from my spinal problems.
About three months ago I started to get a lot of pain in the left leg from the knee to my toes. This is a burning sort of pain. I am on several medications for my back pain, muscle relaxers, Percocet, Elavil, to name a few. The Percocet helped some, but didn't relieve it for long. The pain and excited feeling wake me a lot at night.
My neurologist has put me on Mirapex. I am starting to get relief. I may have to go up with the dosage a bit, per doctor's orders From articles I have read, RLS can be caused by spinal problems I too sometimes experience those same strange exciting feelings in my arms and on my chest. I hope other people can find a good doctor to work with them, and help them find medication that is right for them.
Medical Reply
Trauma to the body (and especially the spine) can trigger or worsen RLS, but there is no known link between your spinal stenosis and RLS. Mirapex does work very well for RLS and the dose should be titrated to the lowest dose that relieves all the RLS symptoms.
Even after two years, Mirapex continues to be a Godsend. After "tweaking" the dosage over this time period, I now take .5 mg at 5:00 pm then another .25 mg when actually going to bed. The results are that all my RLS symptoms are completely gone. In fact, I find myself actually falling asleep on the couch while watching TV, something I haven't done in decades.
However, it also appears that one of the known side effects has appeared as well. If I do fall asleep somewhere other that bed, I find that when I wake up and go to bed, I am nauseated. And in rare occasions - like this morning - I am still slightly nauseated in the morning. However, merely putting something in my stomach will cure my "morning sickness".
Being that this has now been fairly consistent at this new dosage level, I wanted to check with you and see if I should be concerned. Certainly this is better than RLS symptoms, so I am definitely not complaining, but I do have a couple of questions.
1. Based on everything I've read here, it appears that a total of .75mg of Mirapex daily is not excessive by any means. Is that correct?
2. Is the nausea unusual at this dosage level? Is it a concern?
3. Should I just try taking my bedtime dose with something like 7-Up or Sprite?
As always, many thanks for a wonderful website and service.
Dave R.
Medical Reply
Sent: Saturday, September 28, 2002 9:14 AM
Subject: RLS
I think I have Restless Legs Syndrome, I get a sensation in my legs to move,
this usually happens late at night, but it has happened after a long walk
and while sitting down and watching a long movie at a theater. When
this happens I have to get up and walk and stretch my legs.
The symptoms did not begin until I was in my mid-teens, I am 39 now. My mother has the same problem and my 19 year old daughter is starting to have the same sensations. I live in Germany and the U.S. military have been prescribing Clonazepam, 1 mg. I have been taking this medication, usually two pills every night along with a prescribed muscle relaxant.
Does my symptoms sound like RLS and if so do you think I am taking the right medications? On the average I get about 4 hours of sleep a night.
Elaine M.
Medical Reply
Your description is very compatible with RLS.
Although Klonopin (clonazepam) is listed as one of the drugs of choice for RLS, it is one of my least favorite drugs. It does work well initially for mild RLS, but it tends to cause daytime sleepiness in most patients and may end up causing tolerance and addiction.
Your dose of Klonopin is already on the high side. Mirapex
or Requip work much better and then you do not need a sedative pill (Klonopin)
to put you to sleep. Two other observations
I have found: If I go to sleep on an empty stomach I will sleep well. I
got diarrhea one day so I didn't eat anything from 3:30 PM on. On a empty
stomach, in the middle of an a two week bout of RLS, I slept like a
baby. Second, I have noticed that if I exercise in a specific way my RLS
will be relieved. Walking or running won't work for me. Sports where I
push off from the side with my legs tend to help more; basketball,
tennis, racquetball, aerobics (especially the high impact) all seem to
help. I will have less symptoms, they are still there, only more
manageable. Medical Reply RLS sufferers also have different activities such as
stretching which help their symptoms. Light to moderate exercise usually helps,
but vigorous exercise worsens RLS. I wonder if being on painkillers while I'm there will
cancel out the need for the Ultram. Guess we'll find out! I'm
just worried about a severe attack of RLS while I'm hospitalized and not
being able to convince anyone that I need Ultram. What is your advice? Thanks, Medical Reply Medical Reply
I have now increased my dose to .75 mg before dinner
and at bedtime. So far it has not been working well. My legs bother me
after dinner and throughout the night. Sometimes Requip seems to
activate my RLS at other time it seems to have no effect. Should I
increase my dosage and how high should I go? Medical Reply I thank you for the
response you have recently given me on a couple of issues concerning my
RLS. I do not mean to over utilize your assistance however I am on a
journey to battle this illness and I do not want to leave any stone
unturned. Medical Reply Medical Reply
I had concluded that
it
was an injury from running. Apparently not.
My doctor prescribed Motrin for inflammation in fairly high doses (2400
mg/day) and Klonopin. While I see that Klonopin is prescribed fairly
regularly for RLS, I have not seen any mention of treating inflammation
with
Motrin.
Is my doctor on the right track or might I be taking something that
won't provide any relief?
Ensen M. from Rancho Palos Verdes, CA, Medical Reply
There is no role for Motrin (or any other anti-inflammatory medication)
in
the treatment of RLS. This is not an inflammatory disease so this type of
treatment can only cause trouble. Klonopin is listed as one of the drugs of choice, but
I rarely if ever use the drug for RLS. It causes daytime sleepiness in
a very high percentage of patients and addiction and tolerance occur in most
with time. I have many RLS patients who need to be tapered off this
drug, which is a difficult and painful procedure.
I have had RLS for
many years but not as bad as some of my fellow sufferers describe.
I take Mirapex .25mg 3 or 4 times a day (my RLS starts about noon) but I
have it at night also. When I am bothered at night I take a Sinemet
25-100 and it really works well.
My main problem at present is that I am becoming very
paranoid and am terribly depressed. I am 77 years old. I have
tried Effexor twice but each time it made the RLS very bad at night.
I know you have repeatedly said antidepressants usually complicate RLS
but I am wondering if there might be something that you know of that
would help this and not worsen the RLS.
I Would appreciate your comments. I read all of your
E-Mail and recommend your website to everyone who has RLS problems. I do
so commend you on what you are doing.
Bob T. Medical Reply
The 3 antidepressants that theoretically are the best
for RLS are Serzone, Wellbutrin and Remeron. There is of course quite a
bit of variation and there are many patients who do better with even the
older ones that bother most RLS sufferers. Often it takes trial and error
to find the right one for you (that will help your depression and not
worsen your RLS).
Sent: Wednesday, October 09, 2002 3:39 AM
I feel I am having a mild case of RLS. Last year when I was pregnant my
situation was all the more worse. I have not referred to any doctor, but
have read a lot about it on the net. I am trying to find the root cause of
this problem, which I believe is basically due to wrong sitting posture. I
often sit with thigh part of my legs tightly pressed on the chair with the
calf part of the leg folded (sometimes crossed which makes it even worse)
beneath the chair. It is a position which puts your leg into extreme
tension
with less blood circulation. Moreover I have an eight hour sitting job
which
involves a lot of putting my mind. I am a software engineer. I am totally against taking any kind of medication for
this ailment.
Regards, Medical Reply There is no known cause of RLS so far. Sitting
is one of the most common positions that worsens RLS, but so does lying down
(this is most often worse than even sitting) which puts little or no
pressure on the arteries or nerves in the legs.
The problem seems to be more with immobility rather
than pressure or tension on body parts (it can also occur in the arms). As
long as you feel you are doing well then no medication is necessary, but if
your symptoms do worsen to the point where you are miserable and can't
function well, then please consider medication.
Sent: Thursday, October 10, 2002 5:36 PM Sometimes I feel a hot streak on the side of each foot, but
other
than that, just the buzzing. I'm in the armed forces, they did an MRI
looking for MS but found no scarring. My blood tests are good, no vitamin
deficiencies. Internal medicine had no idea what it was. My OB/GYN doctor
suggested RLS, and I will suggest it to my primary care manager. Is there
a
treatment that does not include drugs? I don't want to take anything that
would affect my work performance. Also, is this a disabling syndrome or
just
a bother?
Thanks, Medical Reply RLS, when mild, may be just a nuisance causing only
mild sleep problems. If it worsens (which it often does as you get
older), then medication may be necessary as it may prevent you from sitting
and working even in the afternoon (or morning in very severe cases). The treatment should not cause any side effects if
chosen and used carefully and virtually no RLS sufferer should end up
disabled with modern therapy. Sent: Friday, October 11, 2002 2:48 PM I can go for a day without any RLS symptoms, climb into
bed with no symptoms, but if I have sex, I can 99% count on a bunch of
upcoming jerks. This even seems to hold true if I have sex in the
afternoon
(I may not notice RLS symptoms for the day prior or the rest of the day,
but
there's a good chance the jerks will get me in the night). And it is
guaranteed that a night of PLMS, even if I do end up getting several hours
of sleep, means I'll experience RLS the next day.
I started getting the jerks a little over 2 years ago. The actual
"daytime"
RLS symptoms didn't start until close to a year later. These symptoms are
all the common ones (ankle flexing, happen often after extremely rigorous
exercise, etc).
Is there any link to testosterone and RLS or PLMS? What's your take
on the "hypnic jerks" -- do you think those are actually RLS as well, or do
you think my RLS is secondary to this condition? Thanks a bunch, Medical Reply RLS is not a secondary condition to PLMD. They both may be caused by the
same genetic disorder and have common nerve/metabolic or other links. If
you have RLS symptoms, then it is most likely that the jerks that you are
experiencing are PLM's not hypnic jerks (as PLMD and RLS are linked as
discussed above). A Reply from Matt
Sent: Sunday, October 13, 2002 3:59 PM
The question of sex (i.e. having any at all, and/or when I have it)
affecting my symptoms is something I haven't seen anybody talk about
anywhere else. Like is it my testosterone level? Some other
level that gets changed by the act?
Thanks again, Medical Reply Hormones can affect RLS (usually this is confined to women) but this is
an
extremely variable phenomenon. Sometimes the change in hormones can help or
worsen RLS.
Sexual intercourse is often helpful (more so in women than in men) but the
mechanism is unknown. Only trial and error can tell you what makes your RLS
better or worse. Sent: Saturday, October 12, 2002 6:36 AM Two out of three nights it does not work the second time and taking
two at bedtime does not seem to lengthen the first sleep stretch either.
Am
I going to need to try another medication or does biofeedback
help sleep? Liz Medical Reply If the Mirapex takes care of your RLS and PLMD then
you should not be using the oxycodone just for sleep. Oxycodone works
well for RLS (and less so for PLMD) and should only be used for RLS if high
doses of Mirapex are not helping. If you need additional help for insomnia not
related to RLS or PLMD, then a sleeping pill such as Ambien would be
helpful. Biofeedback and other non-pharmacologic sleep aids are often
of benefit.
Also, my overactive bladder is better,
and an itchy spot on my leg is completely gone and it's been 2 1/2
weeks. I pray it continues.
Thanks, Medical Reply
I have had RLS for some years...recently I have started taking
Mirtazapine for depression and find that RLS symptoms are severely
increased about 1 hour after taking (30mg) mirtazapine. Any comments?
Mark
Medical Reply
I am afraid because my mother had Parkinson's disease and also a severe nervousness condition. My
doctor is
trying me on Mirapex, but it makes me very drowsy the next morning. And I
have 2 children that I have to send to school. I feel like running sometimes to get relief from this terrible feeling.
I've never suffered from anything like this before. If it gets any worse I
don't know what I'll do. Is there no relief ever? I don't like
taking any medication of any kind. Just about everything I take makes me
very drowsy to where I cannot function normally. Also I have trouble keeping my eyes open at times even though I'm not
sleepy. Is this related to RLS?
Thanks for this website, it has been very informative. Medical Reply Do not worry about the fact that
your mother had Parkinson's disease as it has no relationship with RLS.
You will likely need medication of some type for your severe RLS. Medical Reply There is no
relationship between RLS and auto-immune
diseases, or arthritis. Today, I found out from my
gastrointestinal doctor that cysts have shown up on my liver. This was a
test done for stomach problems I've been having. Is it possible that the clonazepam is causing me a liver problem or even
the stomach problems as all his stomach tests have shown nothing wrong
with my digestive system?
Also, the Clonazepam is becoming less effective. I am suffering from bad
insomnia. Should I contact my doctor to increase the dose or should I
ask him for a different medicine? I had back surgery 10 weeks ago on my lower back due to a disc pushing
on a nerve causing me numbness in my left leg. Could this have anything
to do with the RLS symptoms worsening? The stretching of my legs to
relieve the RLS certainly isn't helping the recovery of my lower back
surgery. The RLS symptoms are presently only on my left side (arm and
leg). Does one thing have to do with the other? Medical Reply I plan to see a psychiatrist. However I
understand antidepressant medication makes RLS worse (heaven forbid!) . Have
you found an antidepressant that is helpful to those of us who have Restless
Leg Syndrome. Medical Reply Medical Reply Sent: Saturday, October 19, 2002 10:43 AM Since increasing the Mirapex has not been helping the RLS, so for
the past week I have not taken the Toprol at night and my legs have not
'hurt'. Could the Toprol be keeping the Mirapex from doing its "job". Brenda Medical Reply To the best of my knowledge, Toprol or any other beta blocking drug should
not interfere with Mirapex or affect RLS adversely. There have been a few
studies showing that beta blocking drugs may even be helpful for RLS. On the Internet I have only found one small
article from a neurologist, who mentions this. Can you explain this? Just for the record: I am on Mirapex and Xanax.
Thank you very much, Medical Reply I just started taking methadone for RLS after
having no luck with Neurontin, Permax, Mirapex and Requip. I'm being given 5
mg. per day. What is the "average" dose found
useful for RLS? and what time(s) are best to take it? I want to keep the dose
at the lowest amount possible to avoid excessive dependence and addiction. On the other hand, I want to give the
methadone a good try before giving up on it, because there is really not much
left for me to try after this. What do you find is the maximum dose you
recommend for RLS, and what's your experience with dependence and tolerance? Thanks, Medical Reply What exactly do you think are the mechanics of why surgery makes RLS
worsen? Is it solely due to stress on the body? Or maybe
anesthesia? How long before it calms down again? Thanks for your
response. Pat Medical Reply Do you find that people with RLS are very
sensitive to medications? For instance, I think I have a mild form of RLS
because I get these symptoms occasionally, but I recently tried to take
Pravachol to lower my cholesterol and it gave me terrible side effects.
Linda M. Medical Reply I really started having what I consider full blown episodes after having foot surgery that went
terribly wrong. During surgery, my blood pressure dropped dangerously
low and I was giving something to raise it back up which is turn filled my foot with blood. The pain was excruciating
and I was put on morphing as nothing else gave me any relief. Since
then I've had many bad nights. A few months ago after not having any
sleep for three nights, I had my husband take me to ER. I was so
depressed and tired I felt if I didn't get any relief I would lose my
mind. Of course as far as my insurance was concerned, RLS was not
considered a reason for going to the ER. I therefore had a $300+ bill to pay
and they didn't help me either. Having said all that, I guess my point
is even though each case seems have differences, there are many
similarities. Like surgeries, hormonal changes, stress. and of course
the heredity thing. I have also been on Ultram for my
arthritis, but never took it at night. There is a whole list of
medications my doctor has ordered for me. Quinine for my nervous legs,
Celebrex for my foot, Valium to calm me down There are many more meds
sitting in my cupboard that I can't or won't take. I'm going to call my doctor tomorrow and would
really appreciated you giving me the right words to get his attention. Like what you think I should start out taking. I apologies
for taking your time, but I'm sure needing your help right now! Thanking you in advance, Medical Reply 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.
Click to go to the RLS Homepage,
RLS Treatment Page
Sent: Sunday, September 29, 2002 9:04 PM
Subject: My RLS will come and go...
A few things I have noticed is that while it will be gone for months,
when a storm comes (or the barometer drops) my symptoms will come on.
They don't seem to go away until more storms come. I live in Northern
California an we only get about 10 inches of rain a year. I have noticed
the symptoms are there when the barometer changes.
Sent: Sunday, September 29, 2002 10:24 PM
Subject: RLS medication while hospitalized
Subject: RLS
I'm having surgery for a meningioma in a week. What
should I do about the RLS medication I take? I take 100mg of Ultram
per day spread out over my RLS hours. Should I alert my neurologist
who takes care of my RLS to let the neurosurgeon know I might need Ultram
while I'm in the hospital?
Pat
You should not have much problem as the narcotic pain
killers given after surgery generally are as potent (or even more potent) as
Ultram for RLS. It should be no problem for them to substitute Ultram (if you
ask them) for the narcotics (once you can take oral medication) for pain and
RLS relief.
It might be a better idea to eventually change to Mirapex
or Requip (unless you have had problems with these drugs in the past) to
control your RLS rather than use Ultram or other pain killers.
Sent: Monday, September 30, 2002 8:03 PM
Subject: Soap for RLS
I know this sounds insane but I swear it works. I read an
article in a magazine (can't remember which one) about RLS and this lady
claimed that she placed a bar of hotel soap in her bed and did not
experience any more painful symptoms. I questioned why she would ever put
soap in bed with her, but knew I had to try it - nothing to lose. I have
been "sleeping with soap" since the first of August. I have slept through
the night ever since. I know people must think I am as crazy as I
thought that woman in the article was, but I'm still willing to share this
information. I hope this will also be effective for others.
Sent: Tuesday, October 01, 2002 7:45 AM
Subject: Requip
I have been taking Mirapex for RLS .5mg day
taken before dinner and .5 mg taken at bedtime. It worked well for years
but began losing its effectiveness recently. I recently switched to
Requip and started taking the same dose as I was with Mirapex.
Thank you for any advice you can provide,
Robert S.
Generally, you need twice the dose of Requip (in mg)
compared to Mirapex. Therefore, the equivalent dose would be 1 mg of
Requip to equal the effect of Mirapex. It is possible that a slightly
higher dose may actually be needed, but only trial and error can ascertain
this.
If the dose of Requip exceeds about 1.5 to 2 mg without
resolving your RLS problems then it is likely that this medication is not
for you.
Sent: Wednesday, October 02, 2002 8:24 AM
Subject: ADHD/RLS
My question has to do with RLS and ADHD, I believe I suffered from ADHD
most of my life and some have mentioned that being treated for ADHD
actually relieved some of their RLS symptoms.
Could you tell me which medications could be used to treat ADHD and if you
have had any success in reducing rls symptoms after treating ADHD.
I currently take either Mirapex usually .5 mg. or Ultram 100mg.
I find the Ultram works wonders for helping me concentrate, I am becoming
overwhelmed by even the most simple tasks. I am a pastor of a church and
concentrating is a must for me.
Thanks for your help
Randy, 42, IL
RLS experts feel that ADHD may be caused by RLS as RLS
when active certainly makes it hard to concentrate or sit still. Thus,
treating the RLS problem may resolve the apparent ADHD. It does not work
the other way around. In fact, the stimulant drugs used to treat ADHD
will usually worsen the RLS symptoms.
Sent: Wednesday, October 02, 2002 3:26 PM
Subject: RLS, Mirapex, and sinus trouble link
I want to thank everyone associated with
this website and RLS. For those of us (most, I suspect) who face the
disheartening and inevitable dismissal of the condition by local,
uninformed Physicians, it is encouraging to be validated by others
having this unfortunate malady and the physicians who have taken the
time to understand and treat it.
My restless leg syndrome accelerated about 5
years ago in earnest, although there are memories of it from early
childhood. Life-threatening digestive disorders requiring five major
surgeries (last one 1.5 years ago: hopefully the last) and attendent
hospital-administered drugs either helped develop it or masked it: I'm
not sure of what to make of it. I have been taking Mirapex (1.5 mg/day
- tinkered with the dose but this is the minimum that does anything
positive) for years to control this, and although it is very effective
compared to nothing (life would be intolerable without), I certainly
continue to suffer from at least moderate sleep deprivation. My
symptoms also include arm movement. Also, most of the flying around
involves the left leg and right arm, whatever that means. An employment
complication dictated from federal requirements prohibits my taking any
narcotic or even potential mood-altering drug, so the choices are more
limited than most. Three questions:
1. Can anyone else link severe onset or
change in their condition to trauma / surgery / narcotic drug regimens /
intense life-saving antibiotic IV treatments?
2. Like
clockwork, the Mirapex causes fairly severe sinus congestion within 30
minutes of taking it. Trying to trick this by taking it at different
times doesn't fool it a bit.
3. Any thoughts about switching off of
Mirapex or rotating with something else, given the drug class
restrictions? I'm not familiar with any of the other medications in
this class like Requip. I have tried Sinemet with little success. I
have also briefly tried Neurontin, but can't see a lot of difference.
I also have Mysoline for "breakthrough" RLS if the Mirapex doesn't work,
and this has been quite successful. Is this a candidate for regular
daily dosing?
Any thoughts would be appreciated.
Thanks again,
Randy M.
1) Most of this list has been associated with RLS.
Generally, trauma to the body (accidental or surgical, especially to the
spine) will often trigger or worsen RLS.
2) Nasal congestion has been a problem with dopamine
agonists and can be a problem for some users of this class of drug. It
may not occur with Requip.
2) Mysoline has not been studied for RLS (as has the
other anti-seizure drug, Neurontin) but if it is working then there is no
reason not to use it even more regularly for your RLS. A change to Requip
from Mirapex may also be helpful for some RLS sufferers.
Sent: Wednesday, October 02, 2002 3:49 PM
Subject: RLS and Motrin?
Yesterday, I was diagnosed with RLS. Reading through your website, I see
that that is exactly what I have. While I was sad to discover there is no
cure, it's better to know than to wonder for the rest of my life about
what
is wrong with me. It's been going on for 2 years.
33 years old male.
Sent: Saturday, October 05, 2002 5:13 AM
Subject: RLS
Subject: Restless Leg Syndrome
Veronica
Subject: RLS
I absolutely can't believe others have the same thing. About a year or so
I've had trouble sleeping, my legs feel like they're vibrating...I feel
like
I'm plugged in. It keeps me awake, but no jerking that I am aware of. I
usually wait 3 or 4 nights before I take a sleep aid, but by then I'm
exhausted.
Cathi in NC
Subject: RLS with PLMS
I most definitely have RLS but think it may be an odd secondary condition
to
my PLMS. I was curious what you think (I am a 28-year-old male).
My PLMS comes about as a series of severe body-wide jerks. My doctor says
they're hypnic jerks, though I never experience the falling/startled
sensation; just the jerk itself. Also, the PLMS seems very closely tied
to
sexual activity.
Matt
Subject: Re: RLS with PLMS
Thanks for your reply; this helps & makes sense
One follow up question though. Have you ever heard of my issue with
sex/libido/whatever affecting RLS? I am still trying to determine
everything that positively & negatively affects me,
Matt
Subject: Oxycodone
Next week I will visit my physician again. I get leg movement
relief
from the Mirapex and iron but I am still not sleeping very well. I have
been
trying 5mg of oxycodone at bedtime and then another when I awaken at 2:30
or
3 am.
Sent: Saturday, October 12, 2002 4:48 PM
Subject: restless leg syndrome
I've had RLS for about 10 years. Taken
every medication and tried every trick to sleep. One morning I decided
to go without any processed sugar at all to see what happened. Guess
what? No more restless legs.
Mary
Some RLS sufferers have done better by decreasing
carbohydrates but only a very few seem to get benefit from this treatment.
Sent: Sunday, October 13, 2002 5:49 PM
Mirtazapine or Remeron is supposedly one of the better depression drugs
for RLS patients, but unfortunately, all the antidepressant medications
can worsen RLS.
Sent: Monday, October 14, 2002 2:58 PM
Subject: RLS
I am a 40 year old mother who is suffering
from what I guess is RLS. My doctor is doing blood test to see if I have a
muscle disease. I have severe aching and cramping legs and arms. My legs
are severely restless mostly in the afternoons and nights. They are
beginning to bother me in the day too.
Connie
Almost all RLS patients can be treated such that their RLS symptoms are taken
care of and side effects are not a problem. In difficult cases such as
yours, it does take some expertise with the disorder and drugs, however.
The drowsiness may be from the medication or from PLMD that is often
associated with RLS which causes poor quality sleep. Also, if you are not
sleeping well due to insomnia from your RLS being active while you are in bed,
you will obviously be tired in the daytime.
Sent: Monday, October 14, 2002 10:45 PM
Subject: RLS
I, as others have had the heebie-jeebies as long as I can remember, I
remember being so excited and in tears when I first heard there actually was
a name for it while listening to the recordings about sleep disorders. I
must have replayed it twenty times, as I could not believe it. I as others
had a horrible time during my many pregnancies as doctors thought you were
referring to leg cramps. I did take one Parkinson's disease medicine one night as my
doctor gave me a script when I took in a little article from the paper (probably
15 years ago).
That kept me up all night with insomnia so I was surprised to know there are
many more meds available today, but as it seems everyone is different and
reacts differently. Do most people have these every night? I may go two to
three weeks with none and then have it for days. I have never established a
pattern and why they are so frequent at times and then go away for awhile.
I am 56 and now they are bad and I do believe they worsen with age . I have
a stationary bicycle beside my bed and ride it as fast as I can until my
calves are real achy and tired feeling, this usually is about a min. or two,
jump back in bed, out of breath and usually I only have to do that once and
I can go to sleep.
I do have it also a lot in my upper right arm and that is easiest to get rid
of by doing large circular movements one way and then the other for a minute
or two. It also seems as if milk sometimes helps.
I am wandering if there is a correlation between RLS and auto-immune
diseases, arthritis etc. I also wake up with both arms asleep almost every
morning at times and can't remember now if this is when I am having the
restless legs at night. If you take the meds you have been referring to are
they taken even when you are not having episodes or do most have them every
night?
Most people who have significant RLS such as yours
have the symptoms every day. They may have days when the RLS is worse or
better, but it rarely goes away completely. It is still not clear why it
varies, but hormones, foods, weather, etc.
The medications work much better if taken before
(one to two hours before) RLS symptoms occur. Therefore, it is better to take
the medications on a regular basis. In your case, where you may go several
weeks without problems, the medications could be taken on an as needed basis,
but it may require higher doses of the drugs.
Sent: Wednesday, October 16, 2002 12:20 AM
Subject: RLS, Clonazepam, back surgery, liver cysts--help
I am a 37 yr. old female. I have had RLS for a long time now. I have
tried many meds. Right now I take Clonazepam .5mg. I take 2 of them at
bedtime. I started out about 2 years ago taking one and now I have
increased to two per my doctor as the effect is lessoning. Now it has
gone from just my legs to my left arm.
Any suggestions for my questions?
Thank you,
Terri
Clonazepam (Klonopin) is a drug that I personally do not like
to prescribe for RLS. As in your case, tolerance develops and higher doses
are needed often leading to further tolerance and addiction. Klonopin is not
associated with liver problems (also, cysts in the liver are most often benign
and not really considered "a liver problem").
RLS occurring in the arms implies that the RLS is getting
worse. Often, trauma (such as surgery) can trigger worsening RLS, especially
when the trauma is directed at the spine (such as in your case).
There is likely no relationship between your numbness and RLS
but that is an area that in really unknown, so I cannot say anything
definitively.
My recommendation is to ask your doctor to treat you with
Mirapex or Requip, both of which are much better RLS drugs and should relieve
your RLS symptoms so that you do not need any sedative to help you sleep. If
you are to get off Klonopin, it should be done slowly to prevent withdrawal
problem.
Sent: Wednesday, October 16, 2002 8:08 PM
Subject: (no subject)
I
have been very depressed with my RLS situation, and think maybe I ought to
try an antidepressant. I'm not sure whether the lack of sleep and constant
fatigue, plus stomach problems are causing my depression or whether the
depression is causing my symptoms.
Thanks,
Sue
Wellbutrin, Serzone and Remeron theoretically are the best antidepressants as
they affect the dopamine system the least. It is however, a very individual
response (some even get better with the "bad" antidepressants), so there are
no guarantees that you will do well with the above medications.
More importantly, treating your RLS with effective (but safe) RLS medication
should let you sleep normally, eliminate your fatigue and let you not have to
worry about your RLS problems. Virtually every RLS patient should get
complete relief from their RLS symptoms with proper treatment. With good RLS
treatment, you may not need any antidepressant mediation.
Sent: Wednesday, October 16, 2002 11:22 PM
Subject: RLS and PLMD
My grandmother, mother, sister, uncle and
I all have RLS. My grandmother and I also have PLMD. Until recently, I
didn't see a physician about it as the treatments didn't seem all that
effective for my family members. I've had RLS symptoms since I was a
teenager and PLMD symptoms for at least 12 years (am now in my early
forties).
I'm curious about other people's daytime
symptoms. In the past year, I have been very fatigued, unable to do many
activities I have always done. Sometimes I sleep as many as 11-13 hours,
yet don't feel refreshed. I often feel a heaviness or pressure in my head,
sort of like the feelings of dehydration from a hangover and often feel
"foggy." When it is at its worst, I am unable to physically get out of my
chair and do anything, although I have the desire to do them. Usually these
symptoms lessen throughout the day, so that by the time it comes to go to
bed, I actually feel the best I've felt all day.
Are these consistent with RLS and PLMD?
Or are these possible sign of a non-sleep problem? I've had many tests
run (thyroid, ferritin, B12, CBC, etc.) and according to them, I'm healthy
and all values are perfectly within normal parameters.
I joined a clinical trial of a new drug
in the same class as Sonata to see if that would help me get to sleep more
easily. Even on the nights where I do not have RLS symptoms, I often can't
fall asleep until 2 or 3 AM. It seems that the above symptoms are worse on
the days after I take the drug. I do fall asleep more easily, and tend to
stay asleep longer periods (only waking and getting up 2-4 times instead of
5-15 times). Is this common with drugs of this class?
I have a sleep study scheduled and see a
neurologist after that. I want to have as much info as possible so I can
ask intelligent questions that allow me to get the more appropriate
treatment.
Ann
Without knowing exactly which drug you are taking for the trial, it would be
impossible to say whether or not the side effects you are experiencing are
from the drug. One would expect if the drug were similar to Sonata (which may
not always be the case even if the drug is in the same class), that there
would be no next day side effects.
The fatigue and other daytime problems that you are experiencing are likely
due to inadequate sleep time (from the RLS causing insomnia) and likely poor
sleep quality (the PLMD can cause this, but a sleep study is necessary to see
if you are having lots of sleep arousals from PLMD).
Subject: RLS & beta blockers
I have had RLS since teen years (am not 62) and take Mirapex. I have been
taking Mirapex about 4 years. After augmentation occurred with Sinemet,
was changed to Mirapex. I am taking the beta blocker Toprol and my doctor
has recently increased the Toprol from 1 morning to 1 morning and 1 at
night.
However, if you have noticed a change in your RLS symptoms since increasing
Toprol, then it is certainly possible that this drug may have an adverse
affect on RLS in your case. With RLS there are often more exceptions rather
than rules.
Sent: Sunday, October 20, 2002 8:00 AM
Subject: restess legs and hyperventilation?
Is it possible that RLS can lead to hyperventilation symptoms? I am almost certain that it does, because I
often wake up with a head that is not able to think clearly, to focus for a
longer time and tingles and what is also very remarkable is that I want to
breathe out all the time. I have been experiencing this since I have RLS and
I find it very disturbing. During daytime these symptoms in my head do not
disappear. At work this is very bothersome.
Corrie A., The
Netherlands
RLS can only lead to hyperventilation if it causes anxiety. hyperventilation
is most commonly caused by anxiety and unless you are very stressed due to
your RLS, there should be no relationship between RLS and hyperventilation.
Sent: Sunday, October 20, 2002 10:51 AM
Subject: methadone
Karen U.
Methadone is reserved for severe RLS so there is no typical dose. It takes
about 1 hour or so to work, so it should be taken one hour before needed (such
as one hour before going to bed or going to a movie, etc.). For very severe
RLS cases who wake up with severe RLS, it may need to be taken upon awakening
and repeated every 6-10 hours after that.
The smallest dose is usually 5 mg one hour before bed and the highest dose
that I have given is about 10 mg three times per day. We always try to give
the lowest dose that takes care of the RLS.
Sent: Sunday, October 20, 2002 10:27 PM
Subject: After effects of surgery
I've noticed that many times surgery is listed as something that can make
RLS/PLMD worse. It didn't matter to me until I was unfortunate
enough to require surgery! Two weeks ago I had a meningioma removed
from the right cerebellum and everything went well. But my RLS is
acting up a bit.
We have no idea why trauma such as surgery may worsen or trigger RLS.
Unfortunately, once started, the RLS may continue indefinitely.
Sent: Monday, October 21, 2002 10:03 AM
Subject: RLS
Sent: Wednesday, October 23, 2002 4:36 AM
Subject: 4am. and heeeeere's Shirlee!
I have been reading with great
interest, the RLS patient letters to you and I noticed the many
similarities that seem to go hand in hand with this condition. As in
my own case, my pregnancies brought about the first episodes and they
disappeared when my children were born.
Shirlee in Michigan
Ask your doctor about going on Mirapex or Requip. You may need some
Ultram or a narcotic at bedtime in addition, but that depends on how
well you do with Requip or Mirapex. This should take care of your
problem and avoid visits to the ER which as you noted are both expensive
and useless.