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Sent: Thursday, June 18, 2009 5:28 PM
Subject: Latest treatment?
I wrote you some weeks back about a new treatment I was put on by my neurologist, for my RLS. My doctor is leaving his practice to move to another state and has put me with another neurologist who treats RLS patients in a sleep center. The problem is it will be 10 weeks before I see the new doctor and I am concerned about continuing my present program exactly as it has been laid out by my former doctor.
I had augmented on the Requip I was taking for 4 to 5 years and needed to get off the drug. The doctor started me on clonazepam, which I know is not a drug you would use but I felt I needed to follow his instructions. Along with the clonazepam, he reintroduced 1.5 mg of the Requip and wanted me to continue this until the clonazepam had been increased over a 4 to 5 week period to .75 mg, in the am and .75 mg in evening. This was to go on for 6 weeks which it did until I saw the doctor 3 weeks ago
At that time, I complained about day time sleepiness, and pretty deep depression., so he agreed to reduce the drug over a 3 week period , to have me down to 1 mg. at night and at the end of the 3 week period no clonazepam during the day. I actually followed this, except I did not increase my night time amount. but rather continued taking just the .75 mg dose.
During the same period of time, he started me on the opiate, oxycodone 5 mg first week and Requip 1.5 mg, then 10 mg of oxycodone and 1 mg of Requip second week, and now on 3rd week I am still at 10 mg oxycodone and just started 5 mg dose of Requip. I am planning to discontinue it altogether by next Wednesday when I am supposed to be up to 15 mg of oxycodone. I am taking the oxycodone at night along with .75 mg of clonazepam. The fact is that I have very little symptoms now following this program but I am suffering from major depression.
The doctor started me on Wellbutrin and after 2 weeks it appeared to be taking effect. As I indicated that I was decreasing the clonazepam also over the 3 week period and I now believe I may be suffering from some withdrawal symptoms from the clonazepam. The last few days, especially since I stopped the day time dose of clonazepam, I have been having very bad depression. I am better in morning but I get worse as day goes on.
Does it sound like this could be the case and do you believe I should continue to slowly reduce the clonazepam or stay with the .75 mg dose until I see my new doctor? I really would like to get off the clonazepam but I have read it is very difficult to do so. I have read that getting off it often includes adding Valium as you reduce the dose. I certainly do not want to be addicted to this drug in the long term and am not sure how much it is doing for my actual symptoms. In your opinion, is it a good idea to discontinue the clonazepam and if so is there a formula for doing so?
Would appreciate any ideas you might suggest since its 10 weeks
till I can see my new doctor?
You can clearly see why I am not a big fan of clonazepam. It
causes daytime sedation (even when taken only at night), usually does very
little to help RLS (other than to put you to sleep which can be done much safer
with better sleeping pills) and it can be very hard to get off the drug. It is
likely that some or most of your symptoms are coming from withdrawal from the
One should get off the clonazepam very slowly. Using the .5 mg tablets you can even taper by .25 mg (1/2 of a .5 mg tablet) every 5-7 days. This might help you get off the drug more smoothly. It should not be necessary to add another benzodiazepine like Valium to help you wean off clonazepam if you go slowly enough.
It is probably best that your neurologist is leaving as his treatment is quite different from the ones that I recommend on this site and in my books.
Typically, the maximum dose of oxycodone should be 10 mg but it can be taken (only if necessary) up to 3 times per day.
A Reply from Cathy
Sent: Saturday, June 20, 2009 5:46 AM
Subject: RE: latest treatment
For some reason my departing doctor believes the clonazepam is necessary to control my symptoms and that the opiates alone will not relieve them without the help of clonazepam. In my opinion, I believe he is just not up to date on current treatments and as I indicated, he has passed me onto another neurologist at sleep center in upstate New York. I see in the neurologist in 10 weeks, in which time I expect to be free of any use of the clonazepam.
biggest hope/fear with the new doctor is he will also believe clonazepam is
not a valid treatment but I will cross that bridge when I get to it. I will
continue the reduction per week at either a .25 mg rate or .125 mg rate until it is
gone. Hopefully it will take the depression with it and will let the Wellbutrin do its
thing. In the long run I would like to find I do not need the Wellbutrin
either but for now I am hoping the introduction of Wellbutrin 150 XR will
offset any depression the clonazepam is causing. As I also indicated, I expect to be totally off the
Requip as of Monday
this coming week, going from .5 mg. at night to zero and staying at the 10 mg
To date my RLS symptoms are mild to nonexistent during the day and generally am willing to try and handle them even if they increase slightly. I know everyone is different but in your opinion, do you believe the 10 mg of oxycodone will be enough to relieve my nighttime symptoms taken once a day at bedtime and is it ok to use oxycodone just at night for symptom relief? Or do you need to take the oxycodone periodically throughout the day to keep a certain amount in your system?
I would actually like to try and decrease the night time oxycodone dose to 7.5 mg to see if this works but I would guess this is a trial and error thing once I am free of Requip. The Requip worked for years with excellent success and I hate to rely on drugs to treat anything but have to do what I have to do. My goal is to keep the opiate intake as low as possible to keep my symptoms under control. I also read that oxycodone has a duration of around 4 to 6 hours so am concerned it may not take me through the night. In this case do people take an additional amount part way through the night or is OxyContin with its controlled release action a consideration at this point?
Once you have been off the Requip for a couple of weeks, you may
be able to decrease your oxycodone dose. However, as you already have noted,
this is a very individual issue and every patient has different needs. Usually,
one dose of oxycodone 10 mg or less should relieve most peopleís RLS symptoms,
even when severe.
The oxycodone dose should take care of you for most of the night as RLS symptoms tend to wane towards the morning. If not, you could get up and take a second dose or change to methadone which has a longer half-life which tends to help patients more easily get through the entire night of sleep without needing a second dose.
If you need help with your new RLS doctor, you can bring him copies of some of my books (either the patient one of one of the doctor ones) to support your treatment (as I have written out very clearly which drugs should be used and how to use them).
Sent: Tuesday, June 23, 2009 10:28 AM
Subject: Hormone withdrawal and RLS?
I have always had a little RLS which went away when I went to sleep but now that I am gradually reducing my hormone therapy (I am using 1/4 of the patch currently) and I have RLS so bad that I am sleeping only 4-5 hours a night if I stay in bed about 11 hours. My doctor gave me Mirapex and I have taken it two nights and the RLS is gone but my heart beats really fast and I still have trouble sleeping. I am on .125 mg I am 62 years old. I am also a melanoma survivor (did not spread).
My questions are:
1. Should I even take Mirapex because of the melanoma?
2. Is increased heart rate and insomnia a side effect of the Mirapex or do you think that it is just the hormone withdrawal?
3. If I continue the Mirapex, should I continue on the .125 mg or should I go to the .250 prescription that I have? Or should I cut the .250 in half?
Pat S. from Arizona
The concern about Mirapex and melanoma has more to do with the
link between Parkinsonís disease and melanoma which has caused the dopamine
agonists which are also used to treat Parkinsonís disease to get this warning.
There has never been a reported case of Mirapex or Requip causing problems with
Insomnia has been associated with Mirapex but in your case, this problem may also be due to hormone withdrawal. The only way to figure this out would be to stop then restart Mirapex to see what happens to the insomnia problem (once you are stable on the hormones).
You should always stay on the lowest dose of Mirapex that relieves your RLS so there is no reason to increase to the .25 mg dose. Cutting the .25 mg in half may be cheaper but if not, just stay on the .125 mg tablet.
Sent: Friday, June 26, 2009 11:14 PM
Subject: clonazepam withdrawal /oxycodone use
I am trying to stabilize at .75 mg of clonazepam after having dropped from 1.5 mg. over 3 week period of time from 6/2 to present , per doctors suggestion, have been holding on .75 for 1 week and 4 days due to severe withdrawal symptoms, depression , anxiety and loss of appetite. At same 3 week period was tapering from 1mg of Requip and adding in oxy codone to suppress symptoms. I quit Requip altogether 4 days ago.
I am trying to hold at 10 mg. of oxycodone taken only at night. Starting by taking 7.5 mg. of oxy an hour before bed, then have had to add .25 mg more around 2 to 3 in morning otherwise symptoms return. I have no symptoms during day, and very mild symptoms if any up till about 9 to 10 pm. I do not have an addictive personality, at least I do not believe I do, consume no alcohol and hate having to take drugs at all.
I am trying to avoid adding any more oxy at night, but seem to be on borderline at 10 mg. If I end up having to go to 15 mg. thru night , say starting at 7.5 mg. then having to add another 7.5 to control symptoms thru night, should I be worried about addiction , or need drug holidays every couple of weeks. The last thing I want to do is take more oxy than needed, and am quite concerned of even going up to 15 mg.
Am I being over concerned about this, and is it safe to use 15 mg if needed over say months or years to control symptoms? I hope to cut back , but if I canít am wondering if I will get into trouble with the opiates. I already feel that way with the clonazepam, which I want to get off of if I can do so without suffering the severe symptoms I have now.
This is clearly a difficult time for you as you are trying to
taper the clonazepam and get off Requip. Either of these issues could result in
worsening RLS and needing more oxycodone. It usually takes about 1-2 weeks to
get back to baseline (with respect to the temporary worsening of RLS from
You may also need a sleeping pill like Ambien or Lunesta to treat possible withdrawal insomnia when trying to get off the clonazepam.
Generally speaking, taking up to 15 mg of oxycodone per day should not cause tolerance/dependence in most people but I do not like to go above 10 mg per dose. However, taking another dose several hours after a 10 mg dose should not be a problem.
A Reply from John E.
Sent: Saturday, June 27, 2009 4:45 PM
Subject: RE: clonazepam withdrawal /oxycodone use
You indicated I may need a sleeping pill like Ambien or Lunesta, when trying to get off of clonazepam. I believe I have read that you cannot take either of these drugs while withdrawing from the clonazepam, since they are in a closely related family. Is this true. If not is there a safe dose that can be taken ,or is there another sleep aid I could take occasionally if having a lot of trouble sleeping. This would only be a last resort, since adding any other drug is the last thing I want to do.
As I indicated, its been 1 week and 5 days now since the last drop , but I did cut the clonazepam in half in a 3 week period. I know it has a very long half life, and it appears I am not a fast metabolizer, I get what I call windows of semi normality on and off thru most days, but always returns to depression sooner or later. In your experience , do you believe these will stabilize to give me a normal day, and if so could you venture a guess as to how long I might have to hold on.
I am scheduled to see my psychiatrist on Monday, to discuss my situation, and plan to take your clinical book with me, so any information you are able to give me is invaluable for me to discuss with him. I have been prone to minor depression most of my life, possibly due to the RLS. And sleep starvation over the years. I was put on Wellbutrin 150 mg on June 2nd, and was hoping this would have an effect, but am wondering if the quick drop in clonazepam, assuming I am overly sensitive to this drug) has erased any of the effect the Wellbutrin could be providing.
I hope to get some support from the psychiatrist, Monday, and his opinions. I am not scheduled to see my new sleep neurologist till late august and I could be a basket case long before then.
Typically, I do not recommend taking the non-benzodiazepines
(Ambien, Lunesta, Sonata) with a benzodiazepine such as clonazepam but while
tapering off (or actually I meant when completely off) adding a
non-benzodiazepine may be helpful. You could use the lower doses of Ambien or
Lunesta while on clonazepam .5 mg or less then increase to the full dose when
completely off the drug.
It is certainly quite possible that your current problems are impairing the ability of Wellbutrin to help you. The only way to be sure is to wait until the RLS situation stabilizes and see how you do. Another option would be to increase the dose of Wellbutrin (until your RLS improves) and you can discuss that with your psychiatrist.
A Reply from John E.
Sent: Saturday, June 27, 2009 7:25 PM
Subject: RE: clonazepam withdrawal /oxycodone use
Thank you so much for the time you are taking to answer my questions. In your clinical book, I notice that the benzoís are included in your clinical book for doctors, although not a recommended front line therapy. Its been so difficult the last few weeks just trying to cope with the withdrawal symptoms of the clonazepam, that I would like to know if I was to stabilize on the clonazepam, would it be harmful to continue to stay on the drug for awhile, at least while trying to bring the regimen of quitting the Requip , adding the oxy, and possibly increasing the Wellbutrin under control.
It seems it will be necessary for me to withdraw from the drug
slowly, possibly using the titration method I have read about, since I seem to
be having such symptoms from it.
I have looked at the internet site, Susan Ashton ( UK doctor) method of withdrawal from benzoís, which includes clonazepam, and she substitutes valium in most cases.
Was wondering if you were aware of this method and what your thoughts on it were?
It should be reasonable to stay on clonazepam for a while (until
everything else is under control) as long as your ultimate goal is to get off
the drug eventually.
There are others who have suggested substituting Valium (also a very long half-life) to help get off clonazepam but in many ways that is simply substituting one poison for another. Is Valium easier to get off of than clonazepam? For the most part, there should be no difference although it is likely that some patients may find it easier to get off one drug compared to the other.
A Reply from John E.
Sent: Monday, July 13, 2009 10:02 PM
Subject: RE: clonazepam withdrawal /oxycodone use
Other than Wellbutrin, are there any other antidepressants that are what you would call RLS friendly. I am at 300 mg. of Wellbutrin now , and the depression is still pretty bad. My shrink may want to try and add another antidepressant, so was wondering if you had any suggestions if he attempts this.
Or at least the ones definitely not to try and add. He is a well respected doctor, for treating anxiety and depression, but I know he has not had a lot of experience treating depressed RLS patients, at least according to one of the remarks he made at our last visit.
Trazodone is very RLS friendly but is a fairly weak
antidepressant. Furthermore, it may cause (although very uncommonly) a dreaded
side effect in males called priapism (that may need surgery to be relieved and
may permanently impair your ability to have erections). However, many
psychiatrists do use this medication anyway especially as it does promote sleep.
The other choice is one of the older antidepressants, nortriptyline which some experts have found to be more RLS friendly. It is in the class of TCAís but is a secondary amine which may account for its more RLS friendly profile compared to more common TCAís like Elavil (which is clearly not RLS friendly).
A Reply from John E.
Sent: Tuesday, July 14, 2009 12:35 AM
Subject: RE: clonazepam withdrawal /oxycodone use
I doubt he would try to switch me entirely to one of these but he may try and add them to my already extensive cocktail of clonazepam , oxycodone and Wellbutrin. Would these mix ok with my present medicines, if this is what he wishes to do if my depression does not decrease on the Wellbutrin alone.
Typically, if your current medication is not causing side effects and is partially effective, most doctors would maintain you on this regimen and just add more antidepressant drugs. The only other antidepressant that I did not mention is Serzone (it is mentioned in my books) as it has a rare but very serious side effect of liver failure. However, some psychiatrists still use this drug when deemed necessary. These drugs should work well together (with your current regimen) but your doctor should make those decisions.
A Reply from John E.
Sent: Wednesday, July 22, 2009 8:24 AM
Subject: Re: RE: clonazepam withdrawal /oxycodone use
I just visited my psychiatrist and he agreed to take me off the clonazepam and based on your book and suggestion of the Nortriptyline being more RLS friendly than other antidepressants. I am also adding the nortriptyline at 25 mg for 1 week, increasing to 50 mg the 2nd since I told him the Wellbutrin alone was not handling my depression. Of course all this could go away once the clonazepam is out of my system. In the meantime I hope the cocktail of antidepressants will at least cut back on the depression the clonazepam withdrawal is most likely adding to the problem. I know you are dead set against benzoís for treating RLS and I also believe this is doing nothing for me but creating problems so I am grateful the doctor has decided eliminating the poison is a good idea.
he doctor told me I could come off of the clonazepam in a week from a 1mg, dose. I told him this was contrary to everything I have read on withdrawal from benzoís and that a typical withdrawal program would range anywhere from .25 mg per week, (for a very few people) to as little as 10% per week for those very sensitive to the withdrawal symptoms. Having tried to withdraw from 1.5 to .75 mg over a 3 week period, I experienced severe withdrawal symptoms so I believe I am one of those people who unfortunately need the slow withdrawal program.
Could I have your thoughts on how much per week you would expect to have your patients withdraw from a 1 mg per day dose? Many of the doctors in my area, appear to believe the benzoís are not bad drugs and believe you can come off them very quickly if you decide too but I canít find any support to this on any of the medical sites I pull up mostly all encouraging a slow withdrawal. I donít know how many of your patients you have actually had to withdraw from this poison since I know you donít support its use to begin with. Having dealt so long with RLS, I value your opinion on any experience you may have had with your patients over the years.
As you have already noted there is a great individual variation
in withdrawing from clonazepam. Some can stop from a dose of 2 mg or more
immediately while others need to taper over several weeks.
There is no set method or pattern other than to taper slowly enough so that no withdrawal symptoms occur. It never hurts to taper more slowly so you can choose a very slow taper regimen to be sure that you will not have problems.
Sent: Tuesday, June 30, 2009 11:27 AM
I have PLMD and was on Mirapex for 2 years when I had to quit because of augmentation. Then I started on Ultram, which worked well, until recently when I had a terrible salty like taste in my mouth. Went off it and the taste diminished. Now I 'm trying Neurontin, up to 4oo mg, and strangely my leg movements go, but I develop this strange feeling in my arms and want to shake it out, and it keeps me awake.
At 1:30 last night I was walking around. Any ideas of where to go next. My doctor is great and wanted to put me on Percocet, but I am a little concerned about addiction and taste problem. Any advice will be greatly appreciated.
It is a little difficult to advise you on which drugs to try as
you have developed some unusual side effects (except for the augmentation which
is reasonably common) with many of the other RLS/PLMD drugs.
You could try Lyrica (chemically different than Neurontin) or any of the other opioids. I would not recommend Percocet as it contains acetaminophen (Tylenol) which does not help RLS but rather the purer drugs like propoxyphene (Darvon) on the weaker end or oxycodone on the more potent end of the opioid spectrum. Taken once or so per day there is little if any risk for addiction.
Sent: Thursday, July 02, 2009 9:49 AM
Subject: Re: Severe Shoulder Pain upon starting a regimen of Requip for RLS
I was wondering if there is a correlation between my being prescribed 2mg Requip at bedtime and severe shoulder pain to the point where I have severe ROM (Range of Motion) problems with that shoulder?
I had RLS after coming off of Ultram and began using Requip (generic) and subsequently developed severe shoulder pain which limits my ROM. Is there any correlation between Requip and the shoulder pain, as I have asked my pharmacist and consulted the PDR and have not been able to ascertain whether the pain is due to the Requip.
It is very unlikely (although, anything is possible) that Requip
should cause shoulder pain.
The only way to prove this would be to go off Requip (perhaps substituting a drug like Mirapex or Vicodin) and see if the pain goes away then comes back when restarting Requip.
Sent: Friday, July 10, 2009 7:46 PM
Subject: re: twilight sleep
I am having a total knee replacement Aug. 18th. I have discussed RLS with the surgeon and he is agreeable to giving me meds. that won't exacerbate the RLS. I am to talk to him again before the surgery and I copied the chapter from your book "RLS and Surgical Patients" to go over with him.
I just read a post on RLS.org about twilight sleep and how it made this persons RLS horrible. I am having twilight sleep for my surgery. What are your thoughts on this. Also I don't know if I have PLMD, does twilight sleep affect it? I have a stent in my RCA, but my cardiologist has consulted with the surgeon and gave permission for the surgery. It seems I get one question resolved about this surgery and another one pops up.
Twilight sleep should be no problem unless they use a drug in
the twilight cocktail (such as Benadryl) that worsens RLS. If your cardiologist
has the list of medications that worsen RLS (from my book or from the medical
alert card that you can download free from our website) and makes sure that none
are used, you should have no problems.
If you want extra insurance, just have them add an opioid (such as Demerol) to your twilight cocktail and that should add additional protection from worsening RLS due to being sedentary.
A Reply from Betty
Sent: Saturday, July 25, 2009 9:37 PM
Subject: re: surgery
I will be having a total knee replacement in August. They will be giving me Vicodin for pain, after surgery. I now take .25mg Mirapex twice a day and .5 mg of clonazepam at bedtime. Should I take the Vicodin with the Mirapex and the clonazepam. Or do I need to adjust the meds. somehow?
And after I no longer take the Vicodin is that going to affect my RLS? I doubt if the doctors will know what I am supposed to do in this case.
The Vicodin should be able to take care of your post operative
pain and your RLS. No change in medication is likely necessary.
Once your pain is gone and you are mobile, you should be back at baseline and only need your usual RLS medications.
Sent: Saturday, July 11, 2009 1:07 PM
Subject: RLS medication
I have 24/7 RLS of many years standing and take 3 doses of 1 mg ropinirole over 24 hours i..e. morning, 4 pm and 9 pm. I add 50 mg Ultram to the 4 pm dose, and 100 mg Ultram to the 9 pm dose. Occasionally I have had to use an extra 50 mg Ultram for breakthrough. The ropinirole at this dose helps but does not work on its own, and the Ultram is of benefit.
I still get breakthrough as it comes near the time when I am due medication, and sometimes get breakthrough anyway. If I were to increase my medication should I increase the Ropinirole or the Ultram.
The information leaflet with the ropinirole advises a maximum of 4 mg daily and I am already at 3 mg daily. Is it ok to go beyond a dose of 1 mg ropinirole when it is needed for 24/7 symptoms. (together with Ultram)?
Also, could the RLS in my arms be triggered from the damage in my neck. Especially if sitting in a certain position. And, if injection therapy is suggested on the cervical spine, could this treatment worsen my RLS symptoms, could the therapy be considered a trauma to the back/neck/body, in the way that surgery would be?
The information leaflet for the product information on Requip
states that 4 mg is the highest daily dose since that was the highest dose
tested during the studies to get the drug FDA approved. Furthermore, the studies
were done with once daily evening dosing so that information would not apply to
three times per day dosing. The only concern about increasing the dose of Requip
is that it may increase the chances (although this is not fully understood or
verified) of getting augmentation.
It is really a tossup as to which to increase. It may take some trial and error working with your physician to determine which would work better for you.
Your neck problem may only indirectly worsen your RLS in that any pain or discomfort (or stress) may worsen RLS or many other similar medical problems. Injections are not really considered trauma so they should not worsen your RLS but if they do improve your pain, you may find that your RLS does improve somewhat.
A Reply from Betty R.
Sent: Monday, July 13, 2009 4:37 AM
Subject: RE: medication
You say that it is a toss up as to whether to increase the Requip or the Ultram. My GP is not particularly experienced in dealing with RLS, but he is helpful and really he is pretty much guided by my own research and the Mayo algorithm.
He is not familiar with treating RLS and prescribing doses of Requip for RLS and it was myself who titrated slowly as advised on your web site and I have provided him with relevant information at my attendances with him. He had never heard of augmentation. And the neurologist that he referred me to confirmed that we (GP and I) seemed to be doing OK with my research, and had no need to return to neurologist.
When GP agreed to prescribe Ultram (which I asked for so as not to increase the Requip thinking of augmentation) he took great pains to stress to me that Ultram was a very potent painkiller although he agreed that if I needed help then he considered me a responsible enough person to deal with the Ultram appropriately.
Therefore, although I appreciate his continued willingness to help, I am not certain that he is in the best position to know whether it is best to increase very slightly the Requip or the Ultram, and only if I am desperate.
Are my doses of Requip and Ultram getting high? However, I don't really have a choice because without my present level I would indeed be carted off by the guys in the white coats. If augmentation was not an issue then of course I would increase the Requip from my present 1mg x 3 times daily. At present my total Ultram daily intake is 150 mg, sometimes 200 mg, and my only concern is that if I 'up' the Ultram, then at some point I leave myself at the top of the recommended dose.
In your experienced position, which would you suggest I try first, and by how much?
f I were making the choice, I would probably increase the Requip slowly. I might only increase by .25 mg per dose (you may not actually need to increase the morning or midday doses if your RLS is not as bad at that time or if you are going to be more active. You can increase the dose every 1-2 weeks until you find the lowest dose that takes care of your symptoms adequately.
Sent: Sunday, July 12, 2009 1:54 AM
Subject: RLS and menstruation
I've just started menstruating, after 30 months, due to pregnancy and extended breastfeeding. Along with a very heavy menstruation I am now experiencing RLS. I have never experienced this before and the RLS seems to appear only when menstruation does. Are they related? I also take 150 mg Effexor daily.
Many RLS patients have noticed a relationship between their
hormones (menstrual cycles, menopause, hormonal therapy) and RLS. It may be that
with your pregnancy you may have gotten low on iron which may be further
worsened by your heavy periods. You should have your iron levels and serum
ferritin levels (this is the most important test and should be treated even if
the iron levels are normal). If your serum ferritin is below 50, treating with
iron may be helpful.
Furthermore, Effexor is well known to worsen RLS and if you have been place on this drug or had your dose increased recently, it may be part (likely a very significant part) of your RLS problem. If appropriate, switching to Wellbutrin may be very helpful.
Sent: Monday, July 13, 2009 1:03 PM
Subject: Severe relentless RLS
I am a 30 year old female and have experienced RLS throughout my entire life. When I got pregnant when I was 24 was when the RLS began everyday and every night. I thought after I had the baby it would go away but it has just gotten worse. At first when I was pregnant I was prescribed Lortab and that helped me go to sleep but after I had the baby he started me on Mirapex and then Requip, both which gave me mind altering side effects including severe anger.
Since then I have tried Klonopin 6 mg daily, Sinemet, Lyrica,
Xanax, Valium and am currently taking 3600 mg of Neurontin daily. The Neurontin
is no longer working for me. I am miserable and am falling asleep during the day
due to restless sleep at night. My husband is getting no sleep because of my
flopping in my sleep all night! I also have severe lower back pain due to mild
facet degeneration in my lower lumbar. This plus the RLS makes me want to cut
off my legs!!! Please help me. I don't know where to go from here!
At this point, you should consider adding a strong opioid like oxycodone or methadone (they do not contain acetaminophen like Lortab). The correct dose is the lowest dose that works but typically most RLS patients in your situation use between 5-10 mg per dose (up to 3 times per day in severe cases). You may have difficulty getting your doctor to prescribe these drugs but you can bring him medical literature to assure him of the appropriate use of these drugs for RLS and their safety if used correctly.
A Reply from Amber
Sent: Wednesday, July 15, 2009 7:51 PM
Subject: RE: Severe relentless RLS
I went to my Neurologist/Sleep doctor appt. today in hopes of FINALLY getting relief. I am currently taking 3600 mg daily of Neurontin and it is no longer giving me ANY relief. He did acknowledge that I do have a severe case of RLS. He prescribed me oxycodone 10 mg 3X a day (which has given me immediate relief) and 150 mg Lyrica 2x a day. What I am wondering is that if the 3600 mg of Neurontin is not working, why would he start me on Lyrica (which I have previously tried and he is aware of that)??
He says he wants to use the oxycodone to make me comfortable until we see if the Lyrica works for me. What is the probability that the Lyrica will work if the significantly high dosage of Neurontin does not? Why not just give me the oxycodone which after the first dose has helped tremendously (no back pain OR RLS)?
I typically start out with oxycodone at 5 mg then work up (you can take one and half tablets to get 7.5 mg then 2 tablets to get 10 mg) to find the lowest dose that works. Even though oxycodone at 10 mg is completely relieving your RLS, you do not know whether a lower dose (like 5 or 7.5 mg) would be sufficient.
The odds of Lyrica working when high doses of Neurontin did not help are not very high (although you never know until you try as some patients respond much better to one anticonvulsant drug while not responding to others). Furthermore, if you did not respond to Lyrica in the past, that further reduced the chances of it helping at this point. However, sometimes when drugs are given in combination, drugs such as Lyrica may help reduce the dose of opioids needed to provide relief.
A Reply from Amber
Sent: Tuesday, July 28, 2009 3:59 PM
Subject: RE: Severe relentless RLS
I went to a neurologist 2 weeks ago and he prescribed Percocet 10mg 3x day and wanted me to start Lyrica but I had to slowly lower my dosage of Neurontin daily. Starting the Percocet gave me relief from day 1. Now I found out I am 5 wks pregnant and after week 8, the only thing he could suggest was to nix the Percocet and try the Lyrica.
I am very nervous about taking Lyrica while pregnant and was
wondering what your take on it was. What is typically prescribed for pregnant
women who already have RLS?
Lyrica is Category C so should not be taken while pregnant.
There are few drugs that can help pregnant RLS patients. The drug that is most often recommended and used is low dose methadone. However, you may find that most doctors are reluctant to prescribe this drug to pregnant or even non-pregnant patients.
Sent: Tuesday, July 14, 2009 5:57 PM
Subject: methadone 5 mg and pregnant
I am currently 32 weeks pregnant and on 5mg per day of methadone for severe RLS. My OBGYN wants me off of this drug before delivery in 8 weeks. I dropped the dose to 2.5 and I was out of my mind with RLS in my arms, neck, torso, and legs. The sheer stress of it makes me cry. I went back up to 5mg the next day and I have not tried to lessen the dosage. Is there anything I can do or take to help me?
My doctor wants me off this stuff now but I just can't be in this much torment for over a month and a half. I keep moving during the day and take the methadone at night so that I can sleep. If I have to keep moving all day and night I will go crazy. Not to mention that I look like a freak to my 2 year old son when its in my neck and I have to keep moving my head. I don't want my baby to have to stay in the hospital two weeks withdrawing from the methadone and I don't want to suffer for 8 weeks either.
Why can't I stay on the methadone and breastfeed after delivery so that he will still be getting some in the breast milk. The dose is so low.. please advise.
One more thing, my doctor that put me on the drug two years ago
suggested that I take the methadone up to a week before I deliver and he said
everything would be fine but the GYN said to stop now or the baby will have to
stay in the hospital for two weeks.
The concern about stopping methadone before delivery (at the low
doses used by RLS patients) has more to do with respiratory depression in the
newborn rather than withdrawal syndromes. There is still very little experience
with the use of methadone (even in the small doses used for RLS patients) so we
cannot definitively say that there is no risk of newborn withdrawal but
experience with doses in the 5-10 mg per day range have so far demonstrated few
if any difficulties when used up to a few days of delivery (which is what we do
here) in pregnant RLS women.
Your idea of breastfeeding your child to prevent withdrawal would not work as very little methadone passes into the breast milk which is why it is the only drug recommended for breast feeding mothers with RLS.
Sent: Thursday, July 16, 2009 9:11 AM
Subject: Do Antihistamine Nasal Sprays Interfere with RLS?
Do antihistamine nasal sprays (such as Astelin) tend to worsen RLS in the same way as traditional antihistamines (Benadryl, Claritin, Zyrtec)? My RLS has been well controlled w/ 50-75 mg of Ultram 2-3x/day for almost 3 years now but taking an antihistamine is intolerable. Unfortunately, I suffer from chronic nasal congestion due to allergies and neither Nasonex nor Singular work for me. If you have any tips on what to try after speaking with my physician, please let me know.
Astelin has less of a chance to worsen RLS compared to its pill
form as less antihistamine makes it into your bloodstream. However, some RLS
patients do notice some worsening even with this topical spray.
Better choices include Claritin, Allegra (or the generics for these 2 medications) or Clarinex. These medications do not cross the blood-brain barrier and thus should not worsen RLS.
Atrovent nasal spray is another choice as it is not an antihistamine. It is not in the same class as Nasonex.
Sent: Thursday, July 16, 2009 9:18 PM
Subject: Nightly dosing of Requip
Is it suggested that Requip be taken EVERY night before the symptoms occur?
Typically, Mirapex and Requip are only prescribed for daily RLS problems and should be taken daily 1-2 hours before symptoms occur to be effective.
Sent: Friday, July 17, 2009 1:53 PM
Subject: Re: Cinnarizine
I have just been prescribed this medication for a balance disorder I am suffering. Having checked on the internet I read it can worsen my RLS. the last thing I need. Is there an alternative I could use. My GP is very supported and I would discuss this with her. I would rather suffer the balance problem than make my RLS worse.
Cinnarizine (not available in the USA or Canada) is an
anti-histaminic drug which is mainly used for the control of vomiting due to
motion sickness. Like most of the drugs in that class, it tends to worsen RLS
(often quite markedly).
Kytril and Zofran are anti-vomiting drugs which are safe for use in RLS but there are no drugs that are specifically helpful for the dizziness from balance/inner ear problems. The motion sickness patch, Transderm Scop may be helpful for motion sickness dizziness but it may not work as well for pure inner ear dizziness (and it is safe for RLS patients).
Date: Jul 19, 2009
Subject: Re: Prometrium and RLS
I am a 55 year old woman with RLS since childhood... legs active in early evening and arms severe during the night. After being on bio-identical HRT for a couple of years, I decided to wean myself off and eliminated the 200 mg of Prometrium first. After several weeks, I was sleeping through the night with very little RLS. However the downside of eliminating Prometrium was that I was having too many temperature issue (flashes) throughout the day.
My Nurse Practitioner suggested I balance the 4 mg of BiEst with 100 mg of Prometrium. When I did, the RLS returned with a vengeance. Have you heard of others having problems with Prometrium or BiEst? I so very much enjoyed sleeping those few weeks off Prometrium.... the daytime energy was amazing.
I tried an internet search and came up with some mention of it on your website by a few women but not much else. Please advise.... I would love my sleep back.
There is no research regarding hormones and RLS but it is a very common
observation that your hormones can affect the severity or your RLS. Some get
worse while on hormonal therapy while others improve so it is difficult to
understand this effect.
Changing to another type of estrogen may help but you can only determine this by trial and error.
Sent: Monday, July 20, 2009 9:11 AM
Subject: Re: Assistance, Please
Please help. I've had insomnia for a very long time. I had a sleep study two years ago and was diagnosed with sleep apnea and minor RLS. I was put on Requip (1mg) and have been taking this and tolerating side effects for almost two years. I have informed my doctor of the side effects (muscle soreness in my jaw, weight gain and marked increase in the intensity in the RLS symptoms lasting for 45 minutes after I take the drug) and he was stumped stating that most people feel great on this medication. He gave me a prescription for the extended release version and was not very receptive to my concerns.
Although I do sleep soundly after the initial 45 minutes, I have decided to wean myself off this drug (never filled the prescription for the extended version). I additionally suspected the Requip was causing my tongue to swell and became quite convinced I was correct when I noticed my front teeth had begun to separate. I'm certain this cannot be a good thing, especially for someone with sleep apnea.
Last night I took just .25 mg of Requip, tonight I will take none. I am also currently taking 50-100 mg trazodone (and have for the past 10 years), lemon balm supplement and acetaminophen nightly. When things get unbearable I take a very small amount of Klonopin (less than .25 mg). I don't know what I'll have to take without the Requip tonight as I did not sleep very well last night. How long does it take for the body to adjust? Is there anything I can do to assist this adjustment?
I know it is not advisable to stop a medication without medical supervision, but
I've not had very much luck with the medications this doctor has prescribed and
I'm not up for the battle of trying to explain myself to him. I need to find a
new doctor in the Pasadena, CA area and also need to know how I can cope
meanwhile. Could you give me any recommendations for doctors and treatment,
First off, did you start on Requip at 1 mg or did you titrate up
to that dose? If you did not titrate up to that dose, you might find that a
lower dose works well and may not cause side effects.
If that is not helpful, then perhaps changing to Mirapex but starting at the lowest dose of .125 mg and increasing by 1/2 tablet every 5 days.
If that is not helpful the changing to a painkiller (an opioid or tramadol) or anticonvulsant (Neurontin, Lyrica) should be helpful.
A Reply from Jane
Sent: Monday, July 20, 2009 12:29 PM
Subject: Re: Assistance, Please
I was given the starter pack which gradually increased the dosage to 1mg. I was never titrated in the sense that the lowest possible dosage required for improvement was determined. I have noticed that by taking just 1/2 mg the aching in my jaw decreased and my tongue felt almost normal. Each time I've decreased the dosage in my own attempt to wean off, I've felt closer to normal again. Maybe I do just need less.
At the time of the sleep study I was taking 25 mg Benadryl, 125 mg trazodone, and 5-HTP. I've since read on So-Cal RLS website that Benadryl can worsen RLS. Should I have the sleep study repeated now that I've been off of Benadryl and 5-HTP for 2 years or are the results still conclusive?
I had initially been prescribed Lyrica and it caused too much of an increase in
heart rate and I felt faint and disoriented.
It is very likely that you will do well on a lower dose of
Requip. Many patients who use the starter kit do not realize that they should
stop at the lowest dose that relieves their symptoms.
Sleep studies are of little to no importance for diagnosing RLS. They only show the PLMS (leg kicks) associated with RLS. The importance of these leg kicks are very controversial (many RLS experts feel that they do not cause any problems or are worth treating). You simply need to treat your RLS symptoms that of course can only occur while you are awake.
Sent: Wednesday, July 22, 2009 12:46 PM
Subject: Mirapex/Requip and OCD
I am faced with treating my RLS with either Requip or Mirapex. I also have Obsessive-Compulsive Disorder, which I treat through Cognitive Behavioral Therapy as opposed to medication. I really need to know: Am I setting myself up for a huge issue when I start taking the Requip or Mirapex in regard to compulsive behaviors that have been associated with their use?
Mark, New York
Compulsive behaviors have been associated with the dopamine
agonists. It may be somewhat dose related (although some patients have
experienced it even at low doses) so keeping the dose low may be helpful.
We do not know who is most susceptible to this side effect of the drug but I would certainly be more careful in your case. If you start a dopamine agonist, you should be wary of any increase in compulsive thoughts or behaviors.
If you do not want to risk this problem, consider the use of Lyrica or Neurontin.
Sent: Thursday, July 23, 2009 5:43 PM
Subject: Re: RLS/Hormones/Tylenol
I have been struggling with RLS for a few years. I currently take 2 different kinds of pain medication for this (tried everything else with no success). One of the medications I take includes Tylenol. I have an aunt with RLS as well and she swears that anytime she takes Tylenol, she is up all night with the RLS. I'm concerned this could be a factor in why my RLS never goes away on occasion....it will decrease some, but not completely leave me. This happens about 5-7 days per week. I have noticed that it's usually 5 days prior to my menstrual cycle as well. Could either the Tylenol or the hormones be making these the worst 5 days of the month?
Tylenol does not help or hinder RLS. If your aunt feels that it
worsens he RLS then she may be a rare exception unless she is actually taking
Tylenol PM which contains Benadryl that does typically worsen RLS.
It is very likely that your hormones are causing the increase in your RLS symptoms as that is a very common occurrence.
A Reply from Kelly H.
Sent: Thursday, July 23, 2009 6:53 PM
Subject: RE: RLS/Hormones/Tylenol
Suggestions on the hormone issue? It's a terrible week or so....
No great answers for that problem. Hormonal therapy may worsen
or improve your problem and of course may present other risks.
We simply treat your RLS symptoms with the usual RLS medications on the days that you have increased symptoms. That should be easy to do with the broad choice of drugs that are available.
A Reply from Kelly H.
Sent: Friday, July 24, 2009 7:22 AM
Subject: Re: RE: RE: RLS/Hormones/Tylenol
My doctor doesn't seem to want to 'change' my meds for that one period of time, so I need another option. I've tried all the standard meds like Requip, Mirapex, etc (make me puke), Neurontin...don't work or make me spacey.....clonazepam ...sleepy. etc. Pain medication is all I've found so far and I hate taking that and taking more is really out of the question from the DR. point of view although they are a miracle for me at this point.
I'm thinking having my thyroid checked and my hormone levels. I had a significantly reduced set of symptoms when I was pregnant last year, so I was thinking maybe mirroring those type of levels might work? Could thyroid be an issue....I know that I have also been struggling to lose my pregnancy weight and have been extremely tired and without energy (taking IRON as well).
Also, is it possible to have pain medications lose their effectiveness over time and have a need to increase the dose...that was my other suggestion for at least those 5-10 days?
Most RLS patients get much worse with pregnancy so you are a
distinct exception to that rule. It is likely that more than hormones are
involved (like lower iron levels) and it would be almost impossible to simulate
your hormonal levels during pregnancy with medication and likely dangerous if
Typically, once you find the correct dose of pain medication, it does not usually lose its effect. However, RLS symptoms may vary depending upon many factors (other medications even OTC ones, anxiety levels, hormone levels, other painful conditions, etc.) and you may need more medication to treat your RLS.
It sounds like the best choice for now would be the painkillers but you and your doctor must choose the best regimen that suits your needs and comfort level..
Sent: Thursday, July 23, 2009 8:31 PM
Subject: Treating RLS with Requip and Valium?
I have been suffering from RLS for about 15 years. I started
treatment for it 4 years ago and have found limited relief. My first drug was
Requip with the last dose @ 6mg at night before bed. This was not working so my
doctor has started me on valium 6mg before bed. Tonight is my first night and it
does not seem to be doing a very good job. Is there anything new out there that
I can discuss with my doctor.
The highest dose of Requip recommended for RLS is 4 mg so you
have already exceeded that level. Although very similar, it still may be worth a
trial of Mirapex (but stay within accepted guidelines for using the drug for
If that does not help then your next choice is the painkillers or anticonvulsants (see our website for more info).
Valium is not really an RLS drug but rather helps RLS patients fall asleep due to its sedative properties. There are much better and safer sleeping pills that can be used for that purpose. However, it is much better to relieve your RLS symptoms with the correct medication so that you will likely not need any sleeping pills.
A Reply from Ed H.
Sent: Saturday, July 25, 2009 7:14 PM
Subject: Re: Treating RLS with Requip and Valium?
First I would like to thank you for you response to my email. I must say that I spoke to soon on the effects of the low dose of valium(6mg) before bed. I had my second night of the medication & I slept rather well for the first time in ages. I own a diner & work 7 days a week on my feet constantly. I also have a young and active family so now my concern is the habit forming effects of the valium.
My symptoms of RLS would probably be described as severe. I
suffer from this every night without fail. If failed to take the REQUIP early
enough I could forget about any lengthy sleep time during the night. Would the
same results occur with the medication Mirapex. My doctor is a very smart yet
caring old time doc that doesn't try to push the easiest thing on patients.
Should I bring up the Mirapex to him or am I just trading apples for apples?
Although Mirapex and Requip are very similar, they can have very
different effects in given individuals. The only way to know for sure is to try
Other choices include adding a painkiller (opioids or tramadol) or anticonvulsant drug (Neurontin or Lyrica).
Sent: Sunday, July 26, 2009 10:20 PM
I have just come to the conclusion that I have RLS. For the past couple of years I have been suffering when I sleep, fly on planes or just sitting on the couch. My job is to fly, and it drives people nuts when I have to wiggle my legs. When I sleep I have to shake my legs because of the pain and discomfort. It drives my wife nuts so I have to wait till she is asleep till I can go to bed. thank god she is a heavy sleeper.
I have noticed in the past when I have taken certain drugs for things I have to take a higher dose then normal people. I had so tramadol and Vicodin 10/500 left over from a prior gall bladder issue. When I take the Vicodin I have to take at least 2 of them in order to sleep without the pain from my RLS but I only had a few left over so now I am out. I have not seen a doctor about this yet but am planning on it very soon.
I think that cycling the tramadol with the hydrocodone would work perfect for me since that is what I did the last couple of days until I ran out. what would be your best advice to tell my doctor when I go see him.
Although tramadol and Vicodin are frequently used for RLS, there
are other drugs that should be tried first. Requip and Mirapex are currently the
drugs of choice and the only drugs that are FDA approved for RLS. Another choice
is the anticonvulsants such as Lyrica or Neurontin.
The only concern is that many of the is that many of these drugs are associated with sedation (in some patients) and may cause problems for use in commercial pilots.
A Reply from Donnie C.
Sent: Monday, July 27, 2009 12:47 AM
Subject: RE: RLS
I read about Requip and Mirapex, and weighing the side effects, I'm not sure if I would want to take them. I live in Atlantic city, NJ and a side effect is increased gambling and falling asleep while driving, which I'm sure you already know. Do you know of anyone actually suffering from this, or would one have to try it and hope for the best.
Although sedation is the most common side effect of these drugs (next to nausea), only a very small percentage of patients actually suffer from that problem (insomnia also may occur). Compulsive behavior is even much more uncommon so it is certainly worth trying these medications (as long as you are aware of the side effect that may occur and watch out for them) before writing them off.
Sent: Tuesday, July 28, 2009 1:27 PM
Subject: Use of Reclast
I have had RLS for 10 years or more. Sometime it is bad, sometime not. I have been told that I have thinning bones and need to take something for it. I have read about the side effects of Reclast (zoledronic Acid). Do you have any reports of Reclast and RLS problems. I take gabapentin 400 mg at 6 pm and 400 mg at bed time. I also take alprazolam .5 mg at bed time. For the past month I have been waking up with bad leg pains about 12 to 1 am. I take another gabapentin and want to know if there is anything else I might try.
There is no known relationship (or reports) between Reclast and
RLS. As Reclast is fairly new, it might take some time before such a
relationship could be established. However, the drug is not in a class or
related to any known drugs that tend to worsen RLS.
Other drugs that help RLS include the dopamine agonists (Mirapex and Requip) and painkillers which may also help your leg pains.
Sent: Thursday, July 30, 2009 4:52 PM
Subject: Two RLS questions
I have been taking Lamictal for several years (for minor cycling from depression to dysthymia and back again). Could that be related to developing RLS? Also, the RLS seemed to get a LOT worse a couple of months ago when I started using Astepro nasal spray (azelastine). I've seen restlessness as side effects of both meds in some online non-professional articles.
My RLS seems to be turning into real akathisia; the other day I was doing whole-body writhing during an entire three-hour drive (I was a passenger).
Lamictal is actually in a class of medication that usually helps
RLS so it is difficult to implicate it in your RLS worsening. However, anything
is possible and we have seen almost any drug worsen RLS.
Astepro contains the antihistamine azelastine which is on the list of drugs that worsens RLS. Usually not enough of this topical spray reaches the blood stream to significantly affect RLS but I have seen several RLS sufferers who have experienced exacerbations of their symptoms with this drug.
A Reply from Sharon S.
Sent: Friday, July 31, 2009 3:03 AM
Subject: Re: Two RLS questions
Thank you! I'll continue the Lamictal for now.
The info about Astepro is a Godsend. I'll have to figure out what else to do about my relentless (non-allergic) fits of brutal sneezes--they'd been keeping me up half the night and astonishing my clients during the day. But even sneezing 24/7 would be better than RLS!
Other RLS friendly choices to treat your sneezing problem include the steroid nasal sprays (like Nasonex) and antihistamines like Clarinex or Allegra (fexofenadine is the generic).
A Reply from Sharon S.
Sent: Saturday, August 01, 2009 3:16 AM
Subject: Re: Two RLS questions
Thank you! I've tried those already. Nothing helped until Astepro. I also tried the water pic thing, though it's a messy project and I'm generally so tired that I can't bear to force myself to do it while getting ready to go to work + when I come home 12-13 hours later.
Is it possible that Lamictal is contributing to the nose problem? The sneezing started about the same time I started Lamictal (obviously, it might be a coincidence). At first it was just a couple of bursts of 6 or 8 explosive sneezes a couple times a day, but over the course of perhaps 5 years it got to be practically constant.
It's an astonishing experience. I suddenly take in air practically down to my toenails, then POW!; then it happens over and over. People could hear me at the far end of the office building. Vast amounts of mucus. At night, if I didn't come fully awake at the first nasal sensation, I'd drench the front of my nightgown while reaching for the tissues. The supply of moisture seemed endless! It was happening indoors and out, all seasons, all locations, night and day--right from the start.
Although there are some reports of nasal problems (mainly
congestion, runny nose) with Lamictal, that is not one of the real common
Your sneezing may be difficult to solve without the use of Astepro. It may be helpful to see an ENT specialist. Atrovent nasal spray is one other option worth trying but check with an ENT doctor.
A Reply from Sharon S.
Sent: Monday, August 03, 2009 8:16 AM
Subject: Re: Two RLS questions
Thank you very much--I've made an appt, and will see an ENT this afternoon.
One more RLS question: My RLS symptoms, while certainly classic in regard to night-time, are including more and more daytime akathisia-like writhing and what I can only call psychomotor agitation. Bizarre. I've never been hypomanic in my life, and in any event I'd expect Lamictal to keep symptoms like that at bay. Ordinarily, I'd imagine that a patient at risk of hypomania might get activated on an antidepressant, but not when coming off one!
(I'm a neuro-psychologist; my knowledge of pharmacology is very
limited, as you can see).
The effect of Lamictal for helping what you call daytime akathisia-like writhing and what I can only call psychomotor agitation has not been studied and is really unknown. Furthermore, these drugs can act very differently from patient to patient.
A Reply from Sharon S.
Sent: Friday, August 14, 2009 3:51 PM
Subject: two questions
1) Reading through the RLS questions and answers sometimes frightens me, as it seems that no one ever gets much help, or help that lasts long. Then it occur to me that, of course, only people who continue to suffer will be writing you!
Do you have an educated guess about what percentage of people with RLS do wind up with substantial relief that lasts five to 10 years or more?
2) I have symptoms day and night. I started Requip about two weeks ago, and have slept about one and one-half nights thus far (my usual course is awakening multiple times an hour to thrash, exercise, and so on). I am very, very happy to have had this much sleep, and have hope for coming weeks.
In just one week, I'm due to drive about 6 hours to a vacation spot--the one-week vacation is eagerly awaited, but RLS in the car is dreaded! Of course, I have no way to guess how much my RLS might improve on Requip before this trip.
My husband says driving with me is something like having someone having slow-motion seizures in the passenger seat. I've tried valium and clonazepam in the past but got way over-sedated on a low dose. Is there something I could take before the drive, that would get me there without so much suffering?
(If the RLS doesn't improve much over time, I'll need to take something in November when I fly across-country to a conference, too.)
It is very difficult to guess at the percentage of patients who
do not do well with conventional therapy. My best guess is about 10-25% with use
of only the approved drugs (Mirapex and Requip) and likely less than 10% with
use of all classes of drugs (including anticonvulsants and painkillers).
However, no studies have been done on this problem.
If Requip does not take care of your RLS problem, adding a painkiller (like a Vicodin) should take care of your RLS while traveling.
A Reply from Sharon S.
Sent: Saturday, August 15, 2009 1:10 AM
Subject: Re: two questions
Two more questions:
1) Once I notice the RLS coming on, if I move my legs and arms determinedly for ten minutes or more (doing my best to exercise) enough to make the muscles feel really tired, I can sometimes delay the symptoms for two or three hours. It feels as if I'm burning off some sort of chemical.
Has anyone come up with exercises that help? I have arthritis, so my options are limited.
2) Are there any data to suggest that obese people tend to get RLS more often than slender people do? I'm morbidly obese (have tried everything to slim down for 40 years), and wonder if there might be a fat + don't exercise much = RLS connection.
There is no known relationship between weight or obesity and
RLS. Regular mild to moderate regular exercise (such as walking) has been
associated with decreased RLS symptoms. Higher more vigorous exercise often
worsens RLS symptoms.
It is very common for RLS sufferers to different exercises such as yours to treat their RLS symptoms. You can read about many of these different techniques on our website but it really takes trial and error to decode on which ones work for you.
Sent: Friday, July 31, 2009 7:55 AM
Subject: Is this RLS?
I am a 38 year old female. About 18 months ago I started having
these sensations in my legs mostly during the day. It stopped for a period of 3
months and then started again. Now I have them nearly every day. It's a sort of
I don't feel the urge to move. I go to sleep quite quickly normally but lately I wake up after a few hours with these sensations. I had a sleep study and the neurologist confirmed I did not have PLMD. He is not convinced I have RLS.
What do you think. Your advice will be greatly appreciated. On really bad days I take a temazepam tablet and I sleep ok.
It does not sound like RLS as you must have the urge (almost irresistible) when at rest for a correct diagnosis.
Sent: Sunday, August 02, 2009 5:08 PM
Has there any work currently been done with Neuroplasticity in the control of RLS
No work on neuroplascticity and RLS has ever been done to the best of my knowledge. I am not sure there is any role for this treatment modality in RLS.
Sent: Monday, August 03, 2009 6:00 AM
Subject: Switching medications
I am a 60 year old man with worsening RLS symptoms since 2000. In 2000, my German neurologist started me on Sinemet, but when we moved back to the U.S. in 2001, my new neurologist started me on Requip, 0.5 mg. That took care of it for some months, but I had symptom augmentation continually. My neurologist said that Requip is relatively benign, and just to continue increasing the dosage as needed, so I went to my family doctor for the next few years, and got new prescriptions each time.
I ended up this year, 2009, at 13.75 mg of Requip in order to achieve the same effect. I was transferred to a new neurologist in Georgia (I live in SC), and we decided to try and get off of Requip. He gradually changed me to Neurontin (May 1 to June 1) and clonazepam at night. On the night I went totally off of Requip, I went crazy and walked in circles all night long, so I called the office and his associate said to try 2.5 mg of Requip at night. That solved it, until now; I've had to go to 3.75 mg (3/4 of a 5mg pill) in order to get relief and function. I still take 2000 mg of Neurontin (gabapentin) spread throughout the day. But symptom augmentation is happening again. I'm interested in marijuana--but I don't live in CA.
It sounds like a puff on a joint will relieve all symptoms. Is this true? In September I've got an appointment with my neurologist again. I don't have insurance for this, (moving back from Germany, my wife and I couldn't get health insurance here--it was a mistake to move back, I think.)
It sounds like you are beginning to experience augmentation for
a second time with Requip. My advice would be to discontinue the medication
completely. However, as you already have found out, stopping it will cause a
dramatic worsening of your RLS symptoms (usually for a week or so). This should
be treated with potent opioids (like oxycodone, methadone, etc.).
After a week or two, you should be able to decrease the dose of your opioid and do very well. You may even be able to decrease the Neurontin dose.
Although many patients have reported very dramatic relief with smoking marijuana, most do so only in the evening at home or at bedtime. You would not want to cause a car accident while driving under the influence of this drug (not to mention the illegal nature of the drug and the adverse long-term side effects).
Sent: Monday, August 03, 2009 9:04 PM
Subject: Iron Infusion Therapy and RLS
I have heard that Dr. Richard Allen and Dr. Chris Earley at Johns Hopkins have done work that suggests that RLS patients should take a 1000 MG dosage of InFED (low molecular weight iron dextran) and that this therapy should take care of RLS patients.
What is the status of research regarding iron infusion therapy and RLS?
Drs. Allen and Earley are amongst the top researchers in RLS and
are working on iron therapy for treating RLS. Their studies have shown that many
RLS patients improve after several infusions of iron dextran but not all
patients improved. In addition, most of the patients that got better with iron
worsened after a few to several months after intravenous iron therapy. The
current thinking is that most RLS patients lose iron on a daily basis much
faster than non-RLS people.
Iron therapy may eventually prove to be a very effective and safe therapy for RLS. However, much more work needs to be done to assess the long term safety of this therapy, the amount and frequency iron needs to be given and the real effectiveness of this treatment on larger RLS populations (so far the studies have been done on only a very small amount of patients). We also have to learn which patients will benefit from this therapy.
As intravenous iron therapy studies are still in their infancy, only time will tell whether this will prove to be a standard, accepted, safe and effective therapy for most RLS patients.
Sent: Wednesday, August 05, 2009 5:37 AM
Subject: RLS started up again
I am a 40 year old female and have had RLS for off and on for at least 10 years. It got worse when I was pregnant a year and a half ago and then seemed to subside until now. The last 4 nights have been just awful! I am trying to figure out what might have triggered this as it seems worse than ever. I had a colonoscopy last Thursday and have also started taking an all-natural prenatal multivitamin.
I am not pregnant, but am hoping to be in the near future. Could the anesthesia from the colonoscopy or the vitamin be contributing to this?
Thanks for your help, I am exhausted!
None of the things you have done or are taking typically worsen RLS. There may be something else causing your problems.
Sent: Wednesday, August 05, 2009 6:58 AM
Subject: RE: RLS
I told my physician about the wonderful site that you have. He does not have very many RLS patients. I began my Neurontin Monday evening taking 300 mg. Had a wonderful night's sleep. Last night took the same amount and had to get up. Not bad symptoms but annoying. Took 300 mg. this a.m. as prescribed and if this doesn't work then I take one in the a.m. , one at noon and two at night.
Does this sound right to you???? Was surprised that I would take it during the day when I haven't had any problems for sometime. Feel a little groggy in the a.m., sleeping longer, but the grogginess goes away. Horrible headache waking up the first a.m. but not today.
The Neurontin generally lasts about 6-8 hours or more per dose. You only need to take it 1-2 hours before your symptoms begin. If your symptoms occur only in the evening, there is no reason to take more than one dose per day.
A Reply from Sandra
Sent: Wednesday, August 05, 2009 9:45 AM
Subject: RE: RLS
If I only have difficulty during sleeping hours, how many 300 mg
capsules can I take until my symptoms stop. I am having symptoms where I keep
moving my legs but not the way I used to a couple of years ago I do have to get
up for an hour or two during the night just to get past it when I am bothered
and would like to not have that occur.
And, If I only take the medication at night, if I go on a long road trip can I take one tablet then?
You should increase the Neurontin only under the supervision of your doctor. Typically, this medication is increased slowly (like on a weekly basis). It can be increased to 3-4 pills per dose. You must be careful if driving as this drug can cause sedation even when taken the night before.
A Reply from Sandra
Sent: Monday, August 10, 2009 3:44 AM
Subject: RE: RLS
I seem to be doing well on the Neurontin. My doctor began me at two doses of 300 mg since I was taking 125 mg of Lyrica previously. I am doing well with it. Sleeping through the night also which has been a big issue for a few years but never addressed it until recently. The RLS was mainly on my mind. I have not had to "up" it. Perhaps when we drive from NJ to NC in October I just might need one dose of 300 mg during the daytime hours. Hopefully Medicare won't get into the act on this medication since I am using the generic.
P.S. I am 75 and never drove. At least I don't have to be concerned about that.
As Neurontin (gabapentin) is generic, you should have no problems getting this drug.
A Reply from Sandra
Sent: Sunday, October 25, 2009 4:32 AM
Subject: RE: RLS
I want to update you on my RLS situation.
The Neurontin is working fabulously. I occasionally have a little restlessness but overcome it very quickly during the night by getting up for a half hour. I do not have the extreme sensations as before. I also have been sleeping very well without taking any other medication. That too is a big plus. I am taking 900 mgs. at night spacing them out one hour apart, three hours before bedtime.
I have no symptoms during the daytime. Took a 1500 mile road trip recently and did not have to take any medication except for my usual dosage at night. Fortunately I lost almost 5 lbs. since I began it along with watching my diet as you suggested.
Neurontin has been the best medication for me thus far. It works better than Requip, Mirapex and Lyrica. Hopefully it will continue. I questioned my physician to see if he has many RLS patients and he does not. I am sure he appreciated your input.
It is good to hear that the Neurontin is doing well for you.
Sent: Wednesday, August 05, 2009 12:05 PM
Subject: Mirapex withdrawal
My doctor told me to stop taking my medicine (Mirapex) so I did, now I am walking around half asleep and falling over and falling down the stairs and crashing into things. Also after a fall I would discover my self to be completely naked.
P.S. What is the proper way to get off this medicine?
Stopping Mirapex suddenly (or even slowly) will cause a marked increase in RLS symptoms. I usually stop it suddenly but prescribe a potent opioid (oxycodone, methadone) for 1-2 weeks to treat the temporary increase in RLS symptoms. However, after the 1-2 weeks, you will still need some type of RLS drug treatment to replace the Mirapex.
Sent: Friday, August 07, 2009 4:16 AM
Subject: Question RLS/migraines
Has the research shown and connection between RLS and migraine headaches?
There are some case reports linking migraine headaches and RLS. However, more study is necessary to fully understand the frequency and importance of any possible link.
Sent: Friday, August 07, 2009 3:37 PM
Subject: RLS during naps?
why do I get RLS at night and not when I take naps during day?
RLS follows the bodyís circadian rhythm (the bodyís 24 hour clock) and at tends to occur (in the early stages) in the evening or at bedtime. With time (often decades) or increase in severity, symptoms occur earlier in the day and may then prevent your daytime napping.
A Reply from Linda
Sent: Wednesday, August 12, 2009 8:46 AM
Subject: RLS getting severe?
Can RLS become a debilitating disease? I am on Mirapex and seem to have to increase dosages. Next is a Parkinson's disease medication?
Untreated, in patients with severe disease, RLS can at times
become debilitating. However, when treated correctly, most patients should do
Mirapex is a Parkinsonís disease medication but if you need higher doses, it may mean that your disease is worsening (or something else like a new drug is worsening it) or that you are developing augmentation from Mirapex.
A Reply from Linda
Sent: Tuesday, August 25, 2009 6:10 PM
Can Mirapex prevent weight loss no matter what I do I can't lose weight which makes the extra pounds seem to aggravate my RLS. I am also getting increased pain in legs on movement.
Weight gain is not a typical side effect of Mirapex (but anything is possible). Pain with movement has nothing to do with RLS or Mirapex.
Sent: Saturday, August 08, 2009 2:18 PM
I have restless legs and my doctor advised 8 mg Gabitril for sleep and restless legs have read that Gabitril can cause seizures in people who don't have seizures. your opinion
Gabitril has been associated with seizures in people without known epilepsy. It is not a very common problem and may occur more in patients who are on drugs that lower the seizure threshold (like antidepressants, antipsychotics, stimulants, narcotics).
This is not a first line drug for RLS and should only be considered after the more accepted and tested drugs (like Mirapex, Requip and others) have failed.
Sent: Saturday, August 08, 2009 7:46 PM
Subject: Starting Neurontin?
I have been on a gradually increasing dose of Mirapex for about 10 years, have gotten up to 1.5 mg . It isn't very effective anymore; I still have RLS symptoms but at least the Mirapex allows me to eventually get to sleep, although often I take half a hydrocodone. I tried Lyrica with no results. Recently my neurologist prescribed Neurontin, at my request, starting me at 300mg., and increasing in three weeks to 900 mg, while still taking the Mirapex.
Is there a way to titrate off the Mirapex? Shouldn't I be doing that while increasing the Neurontin? Should I still be taking the same dose of Mirapex? It seems like right after I take both drugs, usually about 8 pm, that the RLS gets really bad for a short time, then a very much improved night's sleep for which I am so grateful!
You can read the many similar posts about Mirapex and
augmentation. We typically recommend stopping the Mirapex and taking an opioid
(hydrocodone may work but typically stronger opioids like oxycodone or
methadone) for a few weeks is necessary. Mirapex can be stopped slowly but we
usually recommend that it be stopped abruptly so that the duration of
withdrawal/worsening of RLS symptoms is shortened.
Neurontin is generally not potent enough to treat the acute withdrawal symptoms even when slowly stopping Mirapex.
A Reply from Gyana
Sent: Monday, August 10, 2009 11:28 AM
Subject: Re: starting Neurontin
My neurologist has told me to keep on the present dose (1.5 mg) of Mirapex, while weekly increasing the Neurontin up to 900 mg. And then to call him, and we will adjust the dosage. I wonder about such a high dose, I am only 100 pounds or so, and almost 69 yrs. of age? I am very tempted to lessen the Mirapex as I increase Neurontin and see what happens. Do you know of the side effects of long-term use of Neurontin?
I am also currently recovering from a recurrence of breast cancer and a mastectomy and reconstruction, and having monthly Herception IV's also taking a lot of supportive supplements. Is Neurontin a drain on my immune system?
Neurontin is not a drain on your immune system. The most common
side effect of Neurontin is fatigue and drowsiness and if you are not
experiencing that problem it is very likely that your will not have any long
Although it is likely better to be on lower doses of Mirapex as 1.5 mg is quite high for RLS patients, you should not reduce this dose without the approval of your doctor.
A Reply from Gyana
Sent: Monday, August 17, 2009 7:22 PM
Subject: Re: starting Neurontin
Since being on Neurontin ( for less than two weeks) I have been experiencing a lot of nausea, fatigue, weakness, also depression since I have been on Neurontin, along with Mirapex. It's been less than two weeks duration that I have been on Neurontin, the first week 300 mg, 2nd week 6oo mg. It has been such a short time and I feel ill on it. Would it be harmful to stop it suddenly?
It would not be harmful to stop (other than perhaps increasing RLS symptoms). However, it often takes a few weeks for one's body to get used to Neurontin so it may be worth waiting a little longer if you can tolerate the side effects.
Sent: Monday, August 10, 2009 4:52 AM
Subject: RLS and Requip dose?
I am 73 and have suffered with RLS since I was a teenager. Back then it only occurred once in a while then progressed to every evening. Now I suffer from RLS every day. I have been on the generic of Requip, Ropinirole, 1 mg. twice a day for 2 years. This sometimes is not enough. I must take an additional pill if I am going to a movie or play. I find I even need to take one before I attend church or else become very restless 1/2 way through the service which is embarrassing.
My doctor, although reluctantly, has prescribed oxycodone 5-325 mg. I use this very sparingly and mostly when I know I'm going to have a very busy day ahead and need a good nights sleep. This drug is amazing. When I feel especially restless, even after a ropinirole, I take an oxycodone and within 30 min. I feel an ease of all my restlessness, arthritis pain and pain from Achilles tendonitis.
I am able to sleep approx. 4 hours and feel well rested in the
a.m. Without it I only manage 1-1/2 to 2 hrs at a time. Last night I was only
able to sleep 3 hours total. The rest of the time I tossed and turned. I know
the DEA monitors this drugs but 30 pills lasts me approx. 4 months so I don't
think I am over doing it or putting my doctor in a bad situation but I wish I
could take one each night.
When I first went on Requip, I was given a 2 weeks sample that started out 5 days of .25, 5 days .50 and 4 days at 1 mg and and stayed there. It was never suggested to stay on the .25 for any length of time to see if it would work.
Should I try to lower the dose now or am I on the right track?
Lowering your Requip dose now will only result in worsening RLS. As your Requip dose is still not that high, you may want to discuss with your doctor increasing the dose somewhat. There is no real problem with taking occasional (or even daily) doses of oxycodone for your RLS. For more severe cases, we use this drug on a daily basis without much problems.
Sent: Thursday, August 13, 2009 6:23 AM
I am currently taking 2 and a half mg of methadone around noon, 5 mg at suppertime and 5 mg at bedtime. Total of 12 1/2 mg a day. I slowly changed to methadone over the past 6 months because of severe augmentation from taking Mirapex for many years,
It seemed to work for awhile, but isnít working now. There seems to be no rhyme or reason as to when during the day or night that RLS hits me. Night are bad. The RLS feelings while using the methadone are sometimes very queer - a bit different than before when on the Mirapex. I am in bad shape!
From reading about RLS and Methadone use, I see that I could safely take up to 30 mg a day, but I can barely tolerate the 12 and 1/2 mg. I have no appetite and have lost over 20 pounds in the past 6 months, which actually puts me at about where I should be weight wise. Driving has become a problem and I feel terribly fatigued and not safe driving sometimes. Donít know if that is due to lack of sleep or the methadone.
In reading some of your answers about methadone I was wondering if I could try alternating with Mirapex (because I have some on hand and it used to work well) What kind of schedule might I use to do the alternating?
Alternating Mirapex is rarely a good idea as this drug needs to
be increased slowly or it tends to cause side effects.
It may be wise to try another opioid and see if it works better (more effective with less side effects). Even though I recommend methadone very frequently, it is not the best for everyone. Often it takes trial and error with several opioids to find the one that suites you best.
Sent: Saturday, August 15, 2009 12:03 AM
Subject: After Sifrol
I have severe restless leg syndrome and have been taking Sifrol for several months. However my body is becoming used to it and the syndrome is returning. I was woken (after Sifrol) at 4am this morning and have been unable to sit down most of the day. If I sit I experience major muscle spasms across my back following what feels like an electric shock, as well as the muscle movement in my legs. I'm on three Sifrol per day and can apparently go to four, but what happens when my body gets used to it?
Without medication I must walk 24 hours per day for however many days I don't take it. Clonazepam made me sleepy heavily but didn't stop the need for walking (I tried to get off Sifrol for a few days so I wouldn't get too used to it). I bumped into every known artifact in the house! After 24 hours I returned to Sifrol but I'm getting to used to it and it is not working so well now. I don't have much to look forward to.
I am a writer, but writing is so difficult these days, with
fatigue and difficulty working at the computer. I'm normally very optimistic,
but this is getting me down.
You do not specify your dose of Sifrol (pramipexole or Mirapex here in the USA). However, it sounds like you are suffering from augmentation ( a worsening of RLS from taking a dopamine drug). Typically, the dopamine drug (Sifrol) should be stopped but as you have already found out that causes marked worsening of RLS symptoms for 1-2 weeks. To treat this worsening, you must use potent opioids. After a week or 2, you can change to anticonvulsants or less potent painkillers. With proper treatment, you should do well.
Sent: Wednesday, August 19, 2009 1:30 PM
Subject: acetaminophen dangers?
Please share my story with your readers. Several months ago I wrote to you regarding concerns about acetaminophen. I have had 24/7 RLS for the last five-six years and was taking hydrocodone for relief. Over the last few years, the dose was gradually increased to 80/2600mg. I had been at that prescribed amount for the last year and it seemed to keep the RLS under control.
On several occasions I raised concerns with my doctor about the amount of acetaminophen I was taking. He assured me that anything under 4000 mg was a safe, and even suggested I could increase my present dose if needed. About a month ago I began having bladder problems Ė frequent urination throughout the day and night. I became dehydrated, experienced loss of appetite (lost five pounds in a week), and began to feel fatigued, weakness and muscle cramping and frequent dizzy spells. In short, I felt like I was at deathís door. My doctor, and an urologist, ran all the usual tests but everything checked out okay.
Finally, after weeks of trying to figure out what was wrong, I ran across an article on papillary necrosis on the web (a kidney condition directly associated with high acetaminophen use). The article stated that the toxicity, and I assume concentration, of acetaminophen increases in a persons system during hot weather (the weather where I live had been in the high 80s and low 90s for a month).
I suggested this possibility to my doctor and he took me off the hydrocodone and put me on oxycodone (10 mg every six hours). Within days I began to feel better; urination is almost back to normal, no more fatigue or cramping. I am not sure whether I was experiencing an onset of papillary necrosis (all the kidney tests came back positive) but the change in my condition is dramatic.
I hope my story can help others avoid going through a similar
experience. Keep up the good work Ė youíre providing an invaluable resource.
As you know, I always advise avoiding acetaminophen if possible even when the dose is under 4000 mg per day as some people may have trouble with lower doses. However the type of kidney problems caused by the drug would not go away so quickly with stopping the medication.
Sent: Thursday, August 20, 2009 12:54 AM
Subject: RLS ISSUES
I wanted to share my experiences with Mirapex. I have had RLS since the onset in my early 20's and I am 48 years old now. The RLS has progressed to a severe state, but then along came Mirapex at 2 mg a night and the RLS went away. I tried Requip, and many other drugs and combinations thereafter with little to no success. The Mirapex works great for me, but I was diagnosed in November 2008 with bipolar manic depression and thus was prescribed Seroquel and Pristiq.
I progressed to a dosage on each medication to 300 mg of Seroquel and 100 mg of Pristiq. Both of these medications along with the Mirapex were fine, until the last few months where I've noticed that my RLS is bad at night now. So, I began to wean myself off of the Seroquel (not fun) down to 75 to 100 mg and the RLS severity began to subside again. Is there a correlation with Seroquel dosage and the negative effects of the Mirapex to not be effective?
I have been put on a few other drugs to help me sleep and they
seem to cause the same symptoms with the Mirapex which is restless legs again.
Do not take Geodon with Mirapex because it caused me to have severe restless
legs to the point of exhaustion.
Most of the psychiatric medications tend to worsen RLS. Seroquel and Pristiq (similar to Effexor) are well known to worsen RLS and this problem is dose related. Geodon is also not RLS friendly.
A Reply from Jerry
Sent: Monday, August 24, 2009 6:56 AM
Subject: Re: RLS ISSUES
I have found your comments to be true in practice. I took Mirapex 2 mg at night and then 300 mg of Seroquel with 120 mg of Geodon and my had tremors in my legs and arms all night and into the early morning. I will never that Geodon again and I halved the dosage of Seroquel to 150 mg along with the Mirapex. My legs are fine at night, but I still don't sleep well.
Any advice? It's just the sleeping that is a problem. Also, the Seroquel causes me to have a ravenous appetite and I have consequently gained over 50 pounds in about 8 months timeframe.
Ambien or Lunesta are good choices to help you sleep.
Sent: Thursday, August 20, 2009 9:55 AM
Subject: RLS and Lyme disease?
I have problems with RLS for at least 10 years but the symptoms were relatively mild and happen in the beginning of the night only. Recently I got sick (with abdominal pain and a fever) and after multiple X-rays, MRIs, CT scans, endoscopy etc they came to conclusion that I got Lyme decease and put me on antibiotics (I think it was Doxycyline). After 21 day of taking it, I still have abdominal pain but in addition it looks like my RLS gets much worse.
It continues all night long, I can not relax my legs and can not sleep w/out sleeping pills (and sometimes they do not work). I start experiencing some kind of PLMD (not sure that it was PLMD because this involuntary movement took place only several times).
Doxycyline is not known to worsen RLS. It is most likely something else that may be causing y0our problems.
Sent: Thursday, August 20, 2009 10:01 PM
Subject: very very very tight legs upon waking in the morning
I have fairly severe RLS, and have had moderate success with Mirapex. (I take .5 mg at 6pm and another .25 at bedtime. Though not totally successful in alleviating my symptoms it does help. But, it doesn't last through the night and so my doctor has added 10 mg of Ambien and now 10 mg of OxyContin to help get me to fall asleep and sleep through the night. Now I am sleeping through the night, but unfortunately I am waking up with incredibly tight leg muscles, especially the backs of my legs (upper and lower), the sides of my legs, and also my buttocks.
Sitting in a hot tub, doing stretching, etc doesn't seem to relieve my symptoms. My legs just seem to be getting tighter and tighter, especially since I started the OxyContin. (my doctor had put me on Darvon but it was causing me headaches). Even a recent massage did not alleviate the tightness.
Your muscular problem is quite unusual as medications such as oxycodone are often used to treat that problem. Since this may be some type of peculiar reaction, perhaps changing to another opioid (methadone, hydrocodone, etc.) may be helpful. Anticonvulsants (Neurontin, Lyrica, etc.) are a good alternative approach.
Sent: Tuesday, August 25, 2009 11:10 AM
Subject: Another tortured soul with RLS............
My life each day as of late:
I am 51 years old, have been a performing musician most of my life, married the love of my life from my high-school days, and now am a songwriter that records original music at home. I normally have a great love of life and love my wife with all my heart. I have lived here in Albuquerque for about six years and did well for about four of those years with my health issues. One of my three daughters moved here about two years ago as well, I love her dearly as well. My wife and daughter are getting very concerned about my well being as of late. Read on.
I have ankylosing sphondilitis and costoCondritis, and severe kyphosis. I also have Restless Leg Syndrome and Periodic Limb Movement Disorder. I first had it occur in my mid-twenties, maybe once every month or two. Now it is every minute of every day, unrelenting, ever-present, unless I move my body continually, or take strong pain medication.
The instant I start to rest or sleep, I get horrible seizure-like jerking movements in my left leg and left arm, and the intensity swells, forcing me to get up and walk for a while, which will usually ease it some. This affliction has been non-stop for the past three weeks or so, allowing little or no sleep for days at a time.
Constantly, without fail, for weeks now, I have had only a few drug-induced hours of sleep, day and night, endlessly pacing the floor. Only this endless pacing or strong pain-killing medications will ease this slow-motion lightning strike to my already frail limbs. I recently paced for almost 7 days and nights, becoming exhausted and brain-fatigued and full of fear and despair for my very life. I am a six foot, 116 lb. shadow of my former 165 lb. self.
So, if I try to sleep, I then have to get up and pace the floor all night instead, every day, rarely stopping or it happens again and again. My 116 pound body, arthritis-stricken, so frail, so weak, cannot continue this, endlessly waiting to get in to see someone, usually ill-informed about RLS, while my very existence and everything I love in this life, maybe my life itself, lies in the balance. My quality of life is at an all time low now.
This all started 2 years ago with a drug for blood pressure called lisinopril that, as a side-effect, crippled me up more than I already was, making me think that the tramadol I was taking with good results for many years wasn't working anymore leading to the other pain killing drugs, awful side effects, weight loss, and now this awful existence.
Please help me survive this hellish existence before I lose my mind and all I have in this life and maybe even my life itself, please. At this point, I feel I need an expert that is experienced enough with RLS to not make my life even worse than it already is by blind trial and error, I need help and I need it now for I fear for my life and all I hold dear. I guess I need to know who is available to help me in the Albuquerque area that has the expertise and experience to do more good than harm. God bless you for any assistance you can offer at this time.
Most physicians should be able to help you as you have not yet
tried Mirapex or Requip. These drugs help most RLS sufferers and generally
provide complete relief from RLS symptoms when taken correctly. If you feel that
you want to see a more experienced specialist, look up your local neurologist
(movement disorder neurologist specialists would be even better) or sleep
specialist. When you call to make an appointment, ask if the doctor sees a lot
of severe RLS patients and is comfortable treating them.
If the above drugs do not help then painkillers (opioids and tramadol) or anticonvulsant drugs (Neurontin, Lyrica, etc.) may also prove very helpful. Most RLS patients (even severe ones like you) should be able to get relief with proper treatment.
Sent: Wednesday, August 26, 2009 11:56 AM
Subject: RLS, Neurontin and (?) Requip
I was prescribed Requip for moderate to severe RLS (symptoms 7 days a week, legs, torso, and arms, with severely disrupted sleep. Able to function at work because I can take a one-hour nap every day).
I worked up gradually to the standard dose, and got some relief at bedtime. However, my sleep remained light, and I was awakening after four hours with restless symptoms (needing 10-15 minutes of light exercise, sometimes 90 minutes awake in all, and a change of sleep venue before I could fall back to sleep).
I went to my PCP to ask about taking a higher dose, or perhaps a second dose when I awaken, or (if it exists) extended release. Instead, he took me off Requip and started Neurontin, 300 mg.
Neurontin does help me sleep the night, now that I'm up to 600 mg at bedtime. However now I'm having more daytime symptoms than before. I'm wondering if it would be helpful to take a small dose of Requip in the morning before work. My doctor is reluctant to do this, saying there are no data about combining the two.
There is no problem about combining Neurontin with Requip as we
experts do this all the time. You do not say how long you have been off Requip
and what dose you achieved as this may make a difference. There is a chance that
increasing your dose of Requip may actually worsen your problem but this has to
There is an extended release Requip (Requip XR) which is approved for use in Parkinsonís disease. It lasts 24 hours and may or may not be the right choice for you. Additionally, Neurontin can be taken up to 3 times per day (as long as daytime sleepiness/drowsiness does not become an issue).
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.
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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 87.
This web site was last modified on Saturday, October 30, 2010.
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, 2002.
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