Patient letters on RLS symptoms and remedies- Page 88

Sent: Friday, September 04, 2009 6:05 PM
Subject: RE: medication

I have had RLS for around 35 years and it was 24/7 for about 10 years prior to medication, this included occasionally my arms. I have been on medication for around 3 years and approximately 8 weeks ago I increased my ropinirole from 3mg over the 24 hours and am at present taking 4.75 mg ropinirole and 200 mg Ultram over a 24 hour period for symptoms 24/7. These typical RLS symptoms also include a burning sensation. I also use zolpidem.

Dosages are:
9am - .75 mg ropinirole
2pm - 1.00 mg ropinirole (sometimes I have to take 50 mg Ultram also)
6pm - 1.25 mg ropinirole and 100 mg Ultram
9pm - 1.25 mg ropinirole and 100 mg Ultram.
3am - .5 mg ropinirole

I find that although I appear to have benefited from this increase, I am still dealing with symptoms and in particular the symptoms in my arms would appear to be quite resistant. Sometimes more so even than my legs.

Today I was pretty much under some control and earlier this evening I took my pills of 1.25 ropinirole and 100 Ultram at 10pm which was a little late. By 10.30 I was pacing the floor. At 11.30 I took a further 50 mg Ultram. My legs settled somewhat but my arm/shoulder has continued to be resistant and it is now 2 am. The same thing happened the previous night.

My GP has previously mentioned adding an anti seizure medication because of the burning feeling but wanted to wait and take it a step at a time with regard to adding medication. The Ultram helps with the burning.

Should we be continuing to increase the ropinirole (I am a little fearful that my increased arm symptoms are a bad sign) or would it be better to add the anti seizure medication, and if so, at what dose?

Betty R.

Your case may be a little more complicated than just providing a simple answer.

If your RLS has spread to your arms while taking ropinirole, then you may be developing augmentation. If that is the case, increasing the dose will make your RLS worse. You may have to get off ropinirole (which is difficult as your RLS will get much worse for a week or 2).

Neurontin or Lyrica are reasonable choices for treating RLS.

Sent: Tuesday, October 06, 2009 10:25 AM
Subject: Sleeping pills

I have difficulty sleeping even when my 24/7 RLS symptoms have been medicated with Ropinirole and Tramadol and are at peace.

Usually (as long as my RLS symptoms are calm) I fall asleep ok, but then wake up after a couple of hours, and I am wide awake, often working at my computer for several hours before getting another couple of hours sleep. 4 hours total per night would be quite usual.

Even if I take Ambien it only gives me a couple of hours. Reading on your site you also recommend Lunesta, When I Googled Lunesta I came up with eszopiclone.

I asked my GP (here in UK) if he would prescribe eszopiclone (Lunesta in the USA) and he did not have a problem with this. However my GP prescribed zopiclone 7.5mg for me. Is this the same drug, seems to me like it is slightly different. I live in the UK and upon searching I think the only difference is that one is a little stronger than the other.

Reading the general information on Zopiclone it is scary. Says to take it for only maybe 2 weeks, definitely no more than 4 weeks because of the dire consequences of withdrawal, the drug's affect on our driving ability, causing depression etc etc., but us RLS sufferers know that we are likely to need help with sleep indefinitely and not just for 4 weeks.

If we need help with sleep indefinitely, as is likely with RLS sufferers, is it ok to take Zopiclone indefinitely, the way your site suggests that it is ok to take Lunesta indefinitely.

Betty R.

Lunesta (only available in the USA) which is eszopiclone is the purer form of zopiclone (available in Canada, Europe and Britain). All drugs/chemicals exist in two mirror-image forms called enantiomers. There is always a right and left handed version of which only one is active. In the case of Lunesta, eszopiclone is the left handed mirror image and since it makes up 50% of the racemic version (the one that has equal amounts of the right and left handed drugs) zopiclone, only ½ the amount of mg of this drug is needed to get the same effect. Therefore, Lunesta is not really stronger, but rather similar in potency to twice the mg of zopiclone. It is thought that getting rid of the inactive ½ of the drug may cause less side effects and perhaps make the drug work better or longer but this is usually not studied as drug companies do not want to risk demonstrating that the new purer drug may actually be no better than the older racemic drug.

In general, zopiclone or Lunesta is a very safe drug that rarely causes dependence even when taken for months or years. When taken at recommended doses they do not cause withdrawal problems (except for not sleeping just as before taking the drug), next day sedation or depression. Most of my RLS patients who take Lunesta have been on it for years on a daily basis without problems. The 2 week warning comes from it being a sleeping pill and getting branded by the problems that occur with benzodiazepines which comprise the majority of this type of medication.

Sent: Tuesday, October 06, 2009 11:50 PM
Subject: RE: Sleeping pills

Can I just clarify my understanding that my 7.5mg zopiclone therefore actually only contains 3.75mg of the required sleeping drug, as compared to say 7.5mg of Lunesta?

Sorry to come back to you again but I like to know as much as possible about what I am taking. I am only on my second night of zopiclone and have found that compared to Ambien it gives me a longer sleep, of about 6 hours.

Betty R.

Lunesta only comes in 1, 2 and 3 mg tablets. The Lunesta 3 mg is similar to zopiclone 7.5 mg (more or less). This drug has a half-life of 6 hours compared to the 2.5 hour half-life of Ambien which is why it gives you longer sleep times.

Sent: Monday, September 07, 2009 5:12 AM
Subject: RLS and Methylation

To whom it may concern, I have been diagnosed with RLS for 11 yrs. I'm currently on several medications for RLS. I'm unable to take the D.A.'s because they cause me to augment. I have a family history of celiac disease, and most recently my sister had genetic testing and has a deficiency in DMG (dimethylglycine) The physician stated there is a problem in the "methylation process".

Is there any information out there regarding RLS and this deficiency? I'm currently following a gluten-free diet, since I've found that gluten can cause RLS symptoms at times.

KM

There is no information about RLS and celiac disease or DMG deficiency. Some RLS sufferers have noted that certain food containing carbohydrates worsen RLS and some have noted that gluten bothers their RLS. However, those are a distinct minority.

Sent: Sunday, September 20, 2009 5:43 AM
Subject: Opiate change

My current drug regime for Refractory RLS is Lyrica 150 mg three times a day, Xanax 1 mg twice a day, Norco 10/325 mg (2 every 5-6 hrs). There has been a recommendation to change my Norco to immediate release Oxycodone to rid myself of the Tylenol. What is the equivalent of Norco 10 mg to oxycodone. The sustained release doesn't work as well as immediate release.

Any success with refractory RLS patients able to decrease opiate intake? I've been unsuccessful so far. My symptoms get to out of control.

KM

Oxycodone is typically 50% more potent (comparing mg to mg). However, your dose of opioids is already very high. Methadone is often another very good choice as lower doses seem to go farther (although it is usually hard to find doctors who will prescribe this drug). The only way to reduce your opioid intake would be to add another drug but there are not many left that work better than Lyrica.

Sent: Monday, September 07, 2009 2:54 PM
Subject: Need info for treatment of RLS

My husband has had severe RLS & insomnia for over 45 years. Sleep studies revealed he has severe sleep apnea & severe RLS. He now uses a BiPAP Machine but cannot fall asleep nor stay asleep because of his RLS. He has tried many prescription drugs for it, including Mirapex, which helped only minimally so he quit it. He has also tried non-prescription drugs.

Since he got on the BiPAP Machine (in April 2009) he has been using either Temazepam or Clonazepam for his insomnia (the latter leaves him terribly sleepy the next day although he can't go to sleep) and even with either of them, he gets at most 2 or 3 hours sleep. That is all the sleep per night he has attained for over 45 years! As you may realize, we are desperate for an answer for him.

The only thing he has tried which helped his RLS considerably is SAMe, but being an anti-depressant, it caused his insomnia to worsen so he had to discontinue it. He was taking 400 mg of it on arising We wondered if you know anything about SAMe & could suggest a dosage he might take that would not cause insomnia. Or do you have any other suggestions? As I said, we are very much in need of some help. We have not been able to find any RLS Specialist that can help. My husband would rather not go on Requip as he had such a bad time on Mirapex. He would rather use a natural substance (such as SAMe) if it would not cause insomnia.

Also, a recent blood test for thyroid showed a higher than normal TSH (which would normally indicate hypothyroidism. But he has all the symptoms of hyperthyroidism (severe insomnia, weight loss, nervousness, and fast metabolism) I asked our pharmacist if it is possible for someone to have an above normal TSH and have hyperthyroidism instead of hypothyroidism. He said they definitely could, although that is not the usual case.

Madge W.

As you may note by reading older letters, clonazepam is not a very good RLS or sleep medication due to its very long half-life of over 40 hours.

There is no information on the use of SAMe for RLS and therefore we cannot suggest a dose level or recommend using the drug.

It may still be worthwhile to try Requip as it may work differently than Mirapex. If that does not help, then opioids and/or anticonvulsants may help.

A high TSH level is virtually never been associated with hyperthyroidism. If the TSH level is just a little high, it is most likely that it is not causing any symptoms. The symptoms that you have stated to support your presumption of hyperthyroidism are general enough symptoms and are not specific enough to diagnose hyperthyroidism.

Sent: Sunday, September 13, 2009 3:53 PM
Subject: shoulder pain with RLS

I am a 60 yr. old female who has had RLS since pre-teen years. At this point it is refractory RLS, and is being treated with 2-50 mg Tramadol/day, 2.5-10/325 Hydrocodone/night, and 1-1 mg. clonazepam at night for PLMD, fairly successfully. For the past two months the RLS "ache" that had been in my upper right arm has moved into my shoulders and back. The nerve? or muscles? straight across the top of the shoulders hurts all day long and by afternoon the pain is clear down to the waist along both sides of the spine. The tramadol barely knocks the edge off this pain. Once I start taking Hydrocodone in the evening, those pains go away. Is this an RLS symptom?

Virginia

It sounds like you have developed augmentation of your RLS which can be caused by tramadol (although more typically this is caused by the dopamine agonists). Changing to just the opioids like hydrocodone should fix the problem.

We also do not recommend clonazepam as it has a 40 hour half-life and tolerance may occur.

Sent: Monday, September 14, 2009 1:40 AM
Subject: Re: shoulder pain with RLS

Thank you for the advice. I'm currently taking a total of 25 mg 10/325 hydrocodone in the evening/night. Is it safe to go take 5 mg more twice/day (a total of 35mg/day) to get through this augmentation? I see the neurologist in a week, but would like to quit the tramadol now. The should/back pain is very intense. What is the maximum safe dose of hydrocodone (for my healthy liver) for long term use?.

Virginia

You are getting to a high dose of hydrocodone and you should not increase it without the direct supervision of your doctor.

Sent: Saturday, September 26, 2009 4:21 AM
Subject: Re: shoulder pain with RLS

I saw my neurologist Monday. It was a shocking experience. I got his name from the RLS foundation page. Two years ago when I started seeing him, he was willing to treat me as needed. Monday, having run out of easy solutions that don't work, he got angry and suggested things like yoga, needlessly insulted me (because I live in WV!), and referred me to a pain clinic. Being referred to the pain clinic is probably a good move, but his anger and insults were totally beyond us.

We walked out of there wondering what just happened and I cried myself to sleep on the way home. I've offered him your clinical guide for doctors the past two visits, and he's pushed it back to me both times unopened. For the first time he seemed insulted that we aggressively research RLS treatment, and that I had consulted you when he failed to respond to my plea for help between appointments because of constantly increasing pain and discomfort. He told us he wasn't at all sure the pain clinic would take or treat me. I wonder how his name got on the RLS foundation site and if it should be there.

Virginia

It is unfortunate that you had such a terrible experience with your neurologist. Many neurologists can treat RLS and a fairly reasonable level but the tougher cases such as yours may be above their expertise (especially if they do not treat a lot of difficult cases). There is no excuse for the way he treated you but it is likely that his inappropriate actions were caused by being frustrated by his lack of ability to treat you (it is easier to blame you rather than himself for his lack of expertise). Many of the solutions to your treatment are in the book that you offered him but taking the book would expose his lack of expertise and many specialists feel vulnerable doing so.

The list on the RLS Foundation’s website is just a list of doctors who state that they treat RLS patients and in no way attests to their skill to treat the disorder. When this list was started, few doctors even accepted or knew that RLS was a real disorder, let alone know how to treat it. This list was devised so that RLS patients could at least find doctors who stated that they treated the disorder. With the increased awareness of RLS, this list may have outlived some of its usefulness but it may still be better than no list at all. Unfortunately, there is no way to create a list of RLS doctors or experts and have them rated by their expertise.

Pain clinics are very good at treating painful disorders but do not have the knowledge to treat RLS patients. There are other drugs that should be considered that may help you decrease your need for painkillers.

Sent: Monday, September 14, 2009 7:26 AM
Subject: Suffering from depression

I am about to be admitted to a psychiatric facility for depression. I am sure all they will do is give me anti-depressants. I am petrified because of my RLS. I had no problems with it until two years ago when I was given Abilify, which I took for about 4-6 months. That was it for me. Ever since my RLS has been a 24/7 problem. I have suffered from depression all my life and have been on one anti-depressant or another. Right now I am not on anything but Ativan.

Is there some sort of drugs I should absolutely refuse to take when I'm hospitalized?

Dale K.

Abilify tends to cause less problems for RLS than most psychiatric drugs in its class. Only Wellbutrin and trazodone are typically RLS friendly. However, when necessary for major depression, any effective drug should be used and the RLS treated accordingly.

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor.

Sent: Thursday, September 24, 2009 1:46 AM
Subject: Lithium worsens RLS?

My psychiatrist wants me to take Lithium. I looked it up on the RLS discussion boards where it is mentioned as a drug to avoid. My psychiatrist insists that it will not exacerbate my RLS. Is that correct?

Dale K.

The concern about lithium aggravating RLS is based on 2 articles in the medical literature. They are both case reports of patients who developed RLS problems while on lithium and the articles are rather old (1986 and 1991, see below). The reliability of the diagnosis and the frequency of this occurrence are both in question based on a few case reports and old literature. Since there have not been any recent reports (since our diagnostic criteria have been established and awareness of RLS has dramatically increased) and considering the widespread use of lithium, I would have to say that the concern level for this drug exacerbating RLS is rather low.

Restless legs syndrome induced by lithium.
Terao T, Terao M, Yoshimura R, Abe K.
Biol Psychiatry. 1991 Dec 1;30(11):1167-70.

Lithium-aggravated nocturnal myoclonus and restless legs syndrome.
Heiman EM, Christie M.
Am J Psychiatry. 1986 Sep;143(9):1191-2.

Sent: Friday, October 09, 2009 5:57 AM
Subject: Antidepressants and RLS?

I decided not to take that medication because of the side effects. I stopped the Lithium 2 days ago and am only taking the Wellbutrin, which I started 5 days ago. My RLS systems have gotten worse since I started the Wellbutrin. Could that be possible?

Dale K.

Anything is possible. However, Wellbutrin is typically RLS neutral or may actually help a little as it has some dopaminergic (similar to Mirapex and Requip) properties.

Sent: Friday, October 30, 2009 8:18 AM
Subject: RLS and depression?

I am in a pickle right now. I am not taking any anti-depressants because of my fear of exacerbating my RLS. My psycho-pharmacologist will not talk to any RLS doctor about coordinating medication.

I was seeing a doctor for my RLS at New York Hospital, who really has really not given me any medication other than Mirapex and Klonopin for a week each. I had bad side effects.

I am severely depressed and have RLS, but am basically on my own. I do not know what to do. Should I treat the depression and take care of the RLS later on? This frightens me because the Abilify I took for my depression made my RLS 100% worse. This was confirmed by the doctors at Columbia Presbyterian Hospital.

Dale K.

Severe depression should always be treated first then once under control, the RLS symptoms can be addressed. It would be nice to use more RLS friendly antidepressant drugs but as there are only a few available and they are not always adequately effective, drugs that may worsen RLS are typically needed.

Your doctors try at treating RLS was somewhat feeble. A knowledgeable RLS doctor should be able to treat your RLS successfully even while you are on RLS unfriendly antidepressants. However, it may be difficult to find a doctor with enough expertise (although living in New York should make this much easier).

Subject: RE: RLS and depression?
Date: Friday, October 30, 2009, 10:23 PM

Thank you so much. I will get in touch with my psycho-pharmacologist to start on the depression. Strange as it may sound, it is very hard to find any doctor in NYC who even treats RLS, much less has any deep experience with medications. Many doctors I've spoken to know nothing about it. I couldn't even get a referral from any doctors I know and these doctors are affiliated with Mount Sinai Hospital and other well-known hospitals in the City. I had to find a doctor on the internet. I have yet to find one that I feel is competent in dealing with this illness.

Dale K.

Sent: Monday, September 14, 2009 7:37 PM
Subject: Mirapex interaction with thyroid medication

My husband takes Mirapex .25mg. A friend has told me that she couldn't take Mirapex because she takes thyroid medication (Synthroid, I think). My husband takes levothyroxin.  Are there any interaction between this and Mirapex?? Also, he says the Mirapex isn't really helping him anymore. Should he ask the doctor for an increase or something different, or is the thyroid medication interacting??

Susan W.

There is no interaction between Mirapex and any thyroid medications. Increasing the Mirapex by 1/2 tablet may be helpful.

Sent: Tuesday, September 15, 2009 5:58 PM
Subject: Mirapex and Restless *Hand* Syndrome

I suffer from a cluster of sleep disorders including apnea and insomnia. One is myoclonic twitching—some in the legs, but also in the hands/arms. A sleep physician put me on Mirapex maybe a decade ago or longer (.75 mg which I take at about 6PM—3 – 4 hours before I go to bed). If I forget the Mirapex, I feel like I have to move my hands and arms.

I’m wondering what other meds work with RLS (or in my case, restless hand syndrome, if you will). Insurance recently changed and brand-name drugs are going to become very expensive…and there’s no generic for Mirapex, I guess.

Any thoughts on the long-term use of Mirapex…and alternatives?

Harry S.

Requip, which comes as generic ropinirole and is quite similar to Mirapex. It will be somewhat cheaper.

Sent: Thursday, September 17, 2009 2:48 PM
Subject: Primary RLS/PLMD in my left shoulder/arm

I'm a 37 year old RN in Florida. I have been suffering with PLMD for over 8 years which started as RLS sensations in my chest/ pectoral muscles and has since settled into my left shoulder/ forearm for the past 6 years. This disease is a nightmare! I have tried vitamins with no luck and all the other little tips and tricks we have all heard. The only thing that has helped me is tramadol (Ultram). I require at least 100 mg at bed time to get rid of it and also an Ambien helps too.

I find that I need to take as much as 400 mg of tramadol (in divided doses) sometimes to get rid of the symptoms throughout the day at especially at night. I just wanted to let people know that Tramadol has been very helpful for me. I also wanted to ask if anybody has the type of PLMD I have, meaning in the upper body and or arms? If so has anything different helped them? Is there a different term for my type of PLMD...such as Restless Arms Syndrome?

Dave

RLS and PLMD (properly called Periodic Limb Movement Disorder to reflect that it also occurs in the arms) can both occur in body parts other than the legs. However, the RLS symptoms and PLM should always start first in the legs then may travel to the other body parts. The symptoms may lessen in the legs compared to the other body parts.

Treatment is the same for RLS or PLM presenting anywhere in the body. Tramadol is known to improve RLS and is used fairly commonly by RLS experts.

Sent: Friday, September 18, 2009 2:15 PM
Subject: Re: Primary RLS/PLMD in my left shoulder/arm


Saying that RLS/PLMD ALWAYS starts in the legs is confusing to me since it has never affected my legs. Are you saying that I may have something other than RLS? RLS has been in my family for years. I'm the 3rd generation to be afflicted with it. I hope to God the symptoms subside a little if it ever reaches my legs.

Dave

Although we hate to use absolutes in medicine, it is almost unheard of to have RLS patients with symptoms elsewhere in the body without first experiencing them in the legs first. Of course, it is possible that after decades, some patients may forget that it started in their legs but this is not the concern in your case. Without symptoms ever occurring in your legs, I (and most all other RLS specialists) would be very concerned that you do indeed suffer from RLS.

Sent: Friday, September 18, 2009 9:21 AM
Subject: Chiropractic Treatment

Neurontin is a medication that is being given to a lot of patients with RLS. As with many conditions that respond favorably to Neurontin, Chiropractic care is also very effective with RLS. RLS has a large neuromuscular component and as Chiropractors do well to balance the spinal column and thus the nervous system, there is a good chance that RLS will respond favorably to Chiropractic.

In fact, many Chiropractors who treat RLS patients find such a great response to the average RLS patient that RLS patients are referring their friends and family members who also suffer from RLS. Because Chiropractic is a more conservative treatment than medication and surgery, it should certainly be considered first. If Chiropractic renders little or no relief to the symptoms of RLS, then other avenues should be explored, including a referral to a medical professional.

Dr. Robert R.
Chiropractic Physician

The problem we have with recommending chiropractic treatment for RLS is that no studies have been done to scientifically demonstrate its effectiveness. There is a strong placebo effect with any treatment for RLS patients so many of your patients may report that chiropractic has helped them (just as we get may reports of sleeping with soap between the bed sheets will help RLS, arthritis, etc.). The treatments that we do recommend have been proven to work much better than placebo by double blind studies (and even in these studies there is a very high response rate in the placebo group).

Years ago, chiropractors were advocating their treatment for asthma until formal scientific studies definitively proved that the chiropractic treatment did absolutely nothing. If RLS is improved RLS, we would love to see actual proper double blind studies to validate this treatment modality. Otherwise, it is not better than recommending sleeping with soap, snake oil or any of the other many treatments that claim incredible anecdotal success but no actual proof.

Sent: Tuesday, September 22, 2009 1:24 AM
Subject: Chest Sensations

I am a 42 year old male who has RLS and PLMS since my late twenties. I have been on a variety of the "usual" drugs, and am presently on 1mg of Mirapex and up to 200 mgs of Darvocet. The Mirapex is the most helpful, but does not ever completely control it. I am scripted to take up to 2 mg on bad nights, but I have the pharmaceutical hangover the next day (plus hallucinations, etc.) While I have read all these letters, and countless other testimonials regarding RLS; I feel mine is unique in that my sensations are primarily in my CHEST. The "electric" jolts feel like they "shoot" from my chest (like adrenaline feeling) and then radiate to my legs and arms.

Sometimes I have it in my legs but not arms, sometimes arms but not legs, sometimes only on one side. But usually, my chest feels like the primary source. I thought it was my heart, but taking my pulse and BP in the middle of the night, it is never as elevated as I think it is....although the chest sensations are very real and quite intense. Again, the buzzing, electric feeling is in my chest , then makes my limbs twitch (voluntarily and involuntarily). Has anyone else reported this sensation?

Jonathan B.

Most all RLS patients have somewhat unique symptoms which is one of the reasons that it is hard for them to explain (and of course get diagnosed correctly) their problem to their doctor or others.

RLS should initially present in the legs but later on in its course, it may move to the arms or other body parts (including the chest) at which point, the leg symptoms may become less prominent.

If your chest symptoms improve with movement (such as walking) then they are likely related to RLS. If not (or especially if they worsen), you should see a doctor or cardiologist to rule out other causes.

You may want to consider anticonvulsants (Neurontin, Lyrica) or more potent opioids (especially ones that do not contain acetaminophen as does Darvocet).

Sent: Wednesday, September 23, 2009 1:02 PM
Subject: RLS and problems with attention, concentration, and memory

I'm a neuro-psychologist who happens to have RLS--pretty manageable these days, largely thanks to your med suggestions (now taking Neurontin).

Would you be willing to respond to a question I have about a patient I tested today?

Age 48. She has severe RLS, never medicated. It's in her arms, legs, and recently her torso as well. Says sometimes on right side, sometimes on left side of torso. She claims that it doesn't bother her, except that people give her odd looks. Says sleep is fine.

I initially assumed she was "vibrating." She acknowledges only mild anxiety and mild depression. Takes an antidepressant.

Both IQ and memory are average range. Also working memory.

She does have some frontal lobe white matter hyper-intensities on recent (2007) MRI not present in earlier (2002) MRI, but that might well represent normal aging. No records have arrived yet, but she tells me a neurologist ruled out Parkinson's and MS.

Could you tell me if RLS is associated with significant problems in attention, concentration, and memory--to the point of having difficulty comprehending friends' conversations and losing focus repeatedly at work?

To my mind this is classic anxiety, but I'd like to try to rule out a contribution from RLS. I'm not aware of any neuro-cognitive aspects of RLS.

Sharon S., PsyD

RLS has been associated with anxiety and depression quite commonly. This is easy to understand as patients get very anxious anticipating the onset of symptoms (especially when severe) and sleep and very depressed due to sleep deprivation and its consequences. The sleep deprivation is of course associated with problems with attention, concentration and memory.

However, despite the severe RLS, your patient states that she sleeps well. This is rather unusual for severe RLS patients who are not receiving treatment but if she states that the RLS does not really bother her then it would be hard to implicate it in causing any significant problems.

Sent: Thursday, September 24, 2009 11:49 AM
Subject: RLS problems

I am a 24 year old male from Canada who has recently been suffering from (undiagnosed) RLS. I just have this strange tickly feelings in my legs that make me want to stretch them non-stop. RLS happened to me at first a few months ago when I was sick and bed ridden for 3 days. On that day I went for a walk and felt better. This time around however, I have been suffering from this for 4 nights in a row, and also feeling it during the day. I noticed yesterday morning that the veins in my legs and feet were quite visible.

I have a 3 questions.

1 - I have a little bit of problems with depression and anxiety. I have been off medication for 2 years now, but this RLS and sleepless nights have really taken their toll on me and have left me feeling extremely depressed, anxious and hopeless. I am considering going back on medication, but doing some research, I learned that with the medications I was taking for depression and anxiety (Celexa - 20mg, Zyprexa - 2.5 mg), will actually aggravate my RLS. What should I do?

2 - I have tried a lot of the home remedies with little luck (Soap under the sheets, iron, magnesium, blackstrap molasses in soy milk...) and none seem to work. I have an appointment booked with my family doctor on Tuesday. I would like to know, with medication, what is the success rate of treating RLS? I know that it can't be ''cured'' because the symptoms can come back, but what are the odds of me being able to have a normal life?

3 - The day it started, I drank a rooibos tea with Scullcap, a supposedly calming herb. Could this have caused RLS?

Nicolas , going nuts in Canada

1) It would be much better to get your RLS treated with Mirapex or Requip so that your RLS symptoms are relieved and your sleepless nights are resolved. Once you are back to normal, you should have no need for antidepressant medication that would very likely just aggravate the situation.

2) Very few home remedies help the vast majority of RLS sufferers. There are lots of reports of patients being helped by many different home remedies (including soap) but these treatments seem to benefit only a select few.

3) Nothing is known about the herb in the tea that you drank and how it may or may not affect RLS.

Sent: Friday, September 25, 2009 7:35 AM
Subject: RE: RLS problems

Would you say Mirapex and Requip have a good success rate? Can anxiety cause RLS?

Nicholas

Mirapex and Requip have a very good success rate. As with all drugs, they do have some side effects in a minority of users and not all patients benefit from them but overall they do very well.

Anxiety does not cause RLS but rather can make it worse (similar to making other chronic conditions such as back pain worse).

Sent: Tuesday, September 29, 2009 2:38 PM
Subject: RE: RLS problems

I just went to my family doctor, and it was actually really rough. I guess my RLS isn't that bad for now (I am able to sleep), and I didn't really want to be on Requip or Mirapex yet, as I know this disease tends to get worse and I want to wait until I REALLY need them. My doctor told me RLS is usually seen in women in their fifties and very rarely in people (especially men) my age. Is this true?

She followed by saying that medication for RLS doesn't really help, that its just a band-aid solution, and prescribed me with quinine, which after reading this website, I know is not going to be much help. At least I am being sent for blood work.

Basically, I am looking for a little bit of hope. I was hopeful for a while when looking at a post regarding ferritin levels and that raising them by iron injections cured 80% of patients, but then read a later post that explained that those patients symptoms returned after a short while.

I am only 24 years old and it terrorizes me to think that things might just keep getting worse for me from here. I see the cocktail of medication the some people on here take, and I fear another 60 years of life living with this (assuming it will get worse).

Nicholas

Although RLS is most commonly diagnosed in people about age 50, it occurs in all age groups. In RLS patients with a family history of RLS, 1/3 have onset of symptoms before age 21 (often called growing pains). In most studies, the incidence of RLS in females to males is 2/1 but that still leaves a lot of men with RLS.

Even though your doctor is correct about Mirapex and Requip merely treating the symptoms of RLS, they are still very worthwhile medications for those with significant symptoms (similar to back pain or any other chronic condition, only the patient can decide how severe symptoms must be to require medication).

It is still very reasonable to have your ferritin level checked as raising it with oral iron may provide significant relief. Although you are very young, with current medications and the many to follow over the years (research in RLS has increased in an exponential fashion), you should easy be taken care of for your entire life.

Sent: Friday, September 25, 2009 4:48 PM
Subject: I thought clonazepam was passé?

A doctor just added 0.25 mg clonazepam to my existing evening medications of 900 mg gabapentin and 90 mg codeine. This was done after a sleep study in which the pattern of wakening and associated leg movements, as well as the lack of deep sleep until just before morning, suggested my RLS was not being controlled.

Can as little as 0.25 mg clonazepam cause daytime sleepiness? I got daytime sleepiness on 1200 mg gabapentin (by itself & with codeine), so I imagine the combination gabapentin +clonazepam makes things worse? I have been on it 3 days now and I had to lie down twice for an hour-long deep sleep the first day, I slept all afternoon yesterday (which didn't prevent a sound sleep last night), and I can barely stop from drooling and dropping my head on my keyboard today since noon. Previously, I had been taking short, light naps 3-4 days per week, so this is different. But I've been pretty exhausted, falling asleep at the wheel etc. the last few months. Maybe the clonazepam has taught my body how to sleep and now it's doing it, and it will stop when it's finally rested??

Can dependence arise on a daily 0.25 mg? and if so after how many days on it? or is it different for everyone?

Can I skip the clonazepam every few nights to stave off daytime sleepiness? I will see the sleep center again after a few weeks, when my polysomnogram (sleep study) results have been properly analyzed. I am assuming this clonazepam is a stop-gap to get me some rest until then, and I will be taken off it when I see them next. Is that what I should expect from people versed in successful treatment of RLS? If they want to keep me on a benzodiazepine, what could I suggest that has a shorter half-life?

Beth

Although clonazepam is one of the more commonly prescribed sedatives (especially by general doctors as it is very inexpensive), it is a medication that most RLS/sleep specialists use rarely. It has a 40 hour half-life and does tend to cause tolerance. The tolerance/dependence problems usually occur at higher doses but even smaller doses can cause trouble over time. It is very likely that this drug is causing your daytime sleepiness (which is why I almost never use it) despite its low dose (however, it addition to the gabapentin, even this very low dose may cause additive sleepiness problems).

Furthermore, clonazepam does not decrease the leg kicks (PLMS) but rather diminishes the arousals/awakenings from the kicks. Shorter acting sleeping pills such as Ambien (2.5 hour half-life) can do this as well without causing daytime sleepiness. However, the better approach would be to add Mirapex or Requip which actually decrease the PLMS. It is also very controversial whether the PLM needed to be treated at all and many sleep specialists do not treat them. Your sleep study cannot diagnose that your RLS is not being well controlled (RLS are awake symptoms like pain so only you can be aware if it is not being controlled) but only that you have persistent PLM.

Sent: Saturday, September 26, 2009 10:51 PM
Subject: Refractory RLS?

I am pretty desperate. My RLS continues to get worse, and I continue to keep taking more drugs, yet most nights they still aren't enough and many nights am up until 3:00 or 4:00 AM. Then today I felt bad from too many drugs. I take 3200 mg. of Neurontin during evening and later at night and 100 to 250 mg. of Lyrica. Sometimes even a little more of one of the other. I've tried to get off the Lyrica, but can't. I can't take any of the Parkinson's drugs. I can't even take ANY of the opiates anymore - they make me feel very bad the next day. I also take Xanax because of severe insomnia!

Do you know of any doctors in Colorado Springs that are RLS experts? What about acupuncture? Does that work very often? Or anything else that seems to work such as vitamins or minerals? What about Pneumatic Compression Devices?

Irene O.

Your case if clearly one of the more difficult RLS cases and does need an experienced RLS expert to treat it. There are none that I know of in your area.

Acupuncture has not been very well studied (one or two Chinese publications that are not scientifically well performed suggesting some help) and many of my patients who have tried it have not received much benefit. The pneumatic compression device also needs more study as there are conflicting studies demonstrating its effectiveness. All the other OTC remedies including vitamins and minerals have not panned out.

Sent: Sunday, September 27, 2009 1:32 AM
Subject: Requip rebound?

I have been taking Requip for nearly a year. I started at .75 mg and have recently worked up to 3 mg. which apparently is the high end dose for RLS. It was like a miracle when it worked but now may be making RLS worse? Can I switch to Mirapex and start over? I notice on your website that some therapies require a "drug holiday", would that work for Requip?

I can't take mood altering substances. Are Gabapentin or Neurontin mood altering or addictive?

 Ann H.

You do not state how your RLS is getting worse. If your symptoms are occurring earlier in the day, spreading to other body parts or your symptoms are getting more intense and not responding to Requip then it is very likely that you are experiencing augmentation (which a worsening of RLS due to taking a dopamine agonist). Stopping the drug for a few weeks (drug holiday) may help but you will have a marked worsening of your RLS for a week or so and will likely develop the augmentation problem again. Switching to Mirapex may or may not be better as once augmentation occurs with one dopamine agonist it is more likely to occur with another one.

A change to Neurontin (the generic is gabapentin) or Lyrica may be helpful. They are not mood altering drugs and do not cause tolerance/dependence problems. Opioids are another option that work very well and if taken at low dose and are monitored closely are very safe and should not result in tolerance/dependence problems.

Sent: Friday, October 02, 2009 12:46 AM
Subject: Re: Requip rebound?

My doctor agreed to prescribe gabapentin at 300 mg per day. So far so good, insomnia still, but no RLS symptoms! My symptoms are usually not noticed during the day but usually being in the evening when I start to "relax". They worsen until I lay down, then they are rampant. I flip and flop like a fish. I am used to 3 hours or less of sleep per night, without medication I fall asleep perhaps at 4 am. To me it is a miracle to sleep all night.

In reading about gabapentin I see the efficacy or effectiveness can diminish after 1 - 2 years. I wish I could find something that would work forever. My doctor will not prescribe benzodiazepines or opiates and that is okay.

Ann H.

I am not sure where you read about gabapentin’s effectiveness diminishing in 1-2 years as tolerance does not develop with this drug. If higher doses of the drug are required with time it is usually due to worsening of RLS such as from taking a drug that exacerbates RLS, having lower ferritin levels (iron deficiency), etc. For most patients, once an effective dose is found little change is necessary for very long periods of time (or ever).

If you are having problems sleeping (which is very common in RLS patients who have experienced insomnia for years) even though your RLS symptoms are gone, just ask your doctor for the non-benzodiazepine pills, Ambien or Lunesta which are much safer with very low concerns about tolerance/dependence.

Sent: Sunday, September 27, 2009 2:39 PM
Subject: Augmentation, foot pain, and RLS

I remember having RLS symptoms as a teenager, but was not diagnosed until 2007. At that time (age 43) I started taking Requip. Eight months later I was diagnosed with breast cancer, had a mastectomy, and radiation treatments (but no chemotherapy). My reconstruction surgery was 11 months ago. Requip has worked really well, but 8 months ago, I noticed my legs would wake me up while taking an afternoon nap, so my GP said I could increase from .5 to .75. Since then, I have had to increase several times to 1.5 mg. I still have daytime symptoms in the afternoon and evenings. Although I have read about augmentation, I don’t understand what it is, or if I should be concerned about the dose of Requip I take.

I developed foot pain (during the day only, also prickling on soles of my feet) about 10 months ago that kept getting worse and finally ended up at a neurologist 5 months ago. He put me on Neurontin, but now he is unsure what the foot pain really is. I took my father to his neurologist for Parkinson’s, and that neurologist told me that there is a daytime foot pain that is associated with RLS. My neurologist specializes in neuromuscular disorders, but he is not a sleep specialist. Now he says his gut feeling is the pain is really from the RLS, and might not be neuropathy at all. He clarified that the RLS and neuropathy are two completely different things. I have read that RLS is a form of neuropathy.

Neurontin did help the foot pain, but it did not make any difference in my RLS symptoms. I have never had so many side effects from one medication as I did from this one. I have gone down on my dose to help the side effects, but stress and hormones also seem to aggravate both the foot pain and the RLS. Do you have any suggestions?

Jeanne from NC

If you are having to increase your Requip dose to treat RLS symptoms and if your symptoms are occurring earlier in the day, then it is very likely that you are experiencing augmentation. We also do not fully understand augmentation but it may be due to the dopamine receptors getting insensitive to increasing doses of dopamine agonists. If the augmentation symptoms are not too severe and relieved by reasonable increases in your Requip, then it may be appropriate to stay on the drug. However, as your dose approaches 3-4 mg, you may want to change therapy to another class of drug like Neurontin (which unfortunately did not help your RLS) or painkillers.

The issue of your foot pain can be confusing as neuropathy symptoms are quite similar. The way to differentiate neuropathy from RLS (although RLS likely involves nerves, we still do not know enough to actually call it a form of neuropathy) is that the neuropathy pain/discomfort will not get better with movement (although you may notice less when you are distracted by movement or activity) and does not worsen in the evening (unless that is the only time that you can notice it because you are not being distracted by other activities). Also, the foot pain should follow the RLS symptoms (worse when RLS is bothering you and less when not). Since the Neurontin helped the foot pain and not your RLS, it sounds like you already can differentiate between these 2 problems and that the foot pain is likely not related to your RLS.

It is even more complicated as many RLS sufferers (up to 20% or more) may have a related neuropathy (often painful) but this typically occurs more often in those who develop RLS after age 45 or so. We often will use Neurontin to try to treat the neuropathy symptoms at the same time as treating RLS symptoms but as in your case this does not always work. The RLS associated neuropathy is treated no differently otherwise than any other neuropathy (such as diabetic neuropathy). As Neurontin is causing problems, I would suggest a trial of Lyrica.

Sent: Sunday, October 11, 2009 2:00 PM
Subject: RE: Augmentation, foot pain, and RLS

What dose of Lyrica would you suggest I try for foot pain?

Can you explain how I should regulate my dose of Requip. My doctors just say I can take up to 3 to 4 mg, and give no further explanation. Is Requip to be taken or increased “as needed”?

Jeanne

Lyrica comes in 50 mg tablets as the lowest dose. Typically, this is the dose that should be started. It can be taken once a day (lasts about 8 hours) or up to 3 times per day for 24 hour coverage if it is needed. Going up to 75 mg (if the 50 mg dose is not working) reduces the duration to twice daily. If this does not work, then increasing to 150 mg twice daily is possible.

Discussing your Requip dose is more difficult. If you are experiencing augmentation then you have 2 choices. The first would be to take an extra early dose of Requip to treat the earlier in the day RLS symptoms. However, if the augmentation is worsening and causing the RLS to get progressively worse as the dose is increased, then the Requip would have to be stopped and alternative medication considered.

Typically, the Requip is increased by .5 mg on a weekly basis until symptoms are controlled. It is not taken on an as needed basis especially as it needs 1-3 hours to kick in. It works much better when taken before RLS symptoms occur (to prevent them from coming in the first place).

Sent: Monday, September 28, 2009 3:01 AM
Subject: Iron tablets for RLS?

You have always been so helpful so I wonder if you could advise me once again. I take Requip 0.25 mg 3 times daily but it was suggested by my excellent consultant ( who I am due to see again in 3 months time) to take a daily dose of over the counter iron tablets. ( My iron levels are normal). I know my Requip dose is low but I am scared of augmentation so only take higher doses when traveling, going to cinema, etc.

I take 14 mg of iron a day. I have noticed an improvement in my RLS but am experiencing balance problems. I stopped taking the iron and the problems have completely diminished. It does say on the bottle of iron tablets that it may cause dizziness.

Sue in the UK

Your dose of Requip is relatively low and we do think that augmentation is more likely at higher doses (although we do have cases of this occurring at very low doses).

When taking iron, serum ferritin levels should be monitored. It has been found that most RLS sufferers do not benefit from oral iron if their ferritin level are above 50. This may be due in part to the difficulty of getting the serum ferritin level higher than 50 with oral iron but we still have a lot to learn about this issue. However, the serum ferritin level should be monitored to avoid iron overload (despite this being very difficult to achieve for most patients) which can cause many medical problems.

Iron therapy has many common side effects but dizziness (or balance problems) is a rare one. However, if this problem comes and goes with taking and stopping iron (you should repeat this a few times to be sure that they are linked and did not occur once by coincidence) then it is likely being caused by the oral iron and you should stop the medication.

Sent: Tuesday, September 29, 2009 6:07 AM
Subject: Re: Iron Tablets

It just appeared that I didn't experience RLS when sitting in the evening after taking the iron tablets over a number of days. I will monitor this by trying them once more.

Sue in the UK

Your dose of Requip is relatively low and we do think that augmentation is more likely at higher doses (although we do have cases of this occurring at very low doses).

When taking iron, serum ferritin levels should be monitored. It has been found that most RLS sufferers do not benefit from oral iron if their ferritin level are above 50. This may be due in part to the difficulty of getting the serum ferritin level higher than 50 with oral iron but we still have a lot to learn about this issue. However, the serum ferritin level should be monitored to avoid iron overload (despite this being very difficult to achieve for most patients) which can cause many medical problems.

Iron therapy has many common side effects but dizziness (or balance problems) is a rare one. However, if this problem comes and goes with taking and stopping iron (you should repeat this a few times to be sure that they are linked and did not occur once by coincidence) then it is likely being caused by the oral iron and you should stop the medication.

When oral iron therapy does work, it takes months to kick in. Therefore, it is most likely that your improvement has little or nothing to do with iron especially as your iron dose is very low.

Sent: Monday, September 28, 2009 2:19 PM
Subject: Coenzyme Q 10 and RLS?

I have been complaining about RLS to my Dr for years. It was especially bothersome when I was pregnant. He asked me to try coenzyme Q 10. This has worked really well. I was to the point where I thought I was going crazy and thought I could feel it in my arms and hands. Now I take one Q 10, 60 mg twice daily and what a difference this has made.

Sharon

Several RLS sufferers have written us with similar reports of coenzyme Q 10 benefiting their RLS. However, the majority of other RLS patients who have tried have not improved with this drug. We will post your letter for others to read.

Sent: Monday, October 05, 2009 7:02 PM
Subject: RLS/PLMD

I am a 55 year old female, registered nurse who just developed RLS in July, 2009. It came upon me suddenly with severe leg cramps, progressing up my body to my neck within a few short weeks and PLMD movement. I was only previously taking multivitamin, calcium, fish oil and vitamin C and a healthy, no smoking, little alcohol, not over weight person. I went to my family doctor who ran all the blood work and results were normal. He did not know what to do nor did he diagnosis me.

I asked to be referred to a neurologist and had to wait 2 months before I could get in. We ran a EMG and was diagnosed with RLS. Within a month, I tried Klonopin 1.5 mg at bedtime which made me so dizzy, slurred speech and hair loss. I then discontinued the Klonopin and was prescribed on Mirapex .25 mg which made my symptoms worse and could not sleep. I then  asked for Neurontin and he prescribed 300-600 mg at bedtime. My symptoms are still there and really progressed rapidly and I am wondering what is next for me in symptoms.

It seems this physician does not seem to care and I cannot get into see him for another month. In the meantime, I am simply speaking to his nurse on the phone and trying to do my own research, asking for different medications, and yet, having no relief. Can you please help? This is a horrible disease, which shows no definitive medicinal path of remedy in my readings.

Is oral Magnesium an option even though my magnesium blood levels were normal? Can a sleeping pill be advantageous? I plan on getting your book tomorrow.

Edie C.

The book should help as it will educate you on the many different treatments for RLS. I have heard from many patients who have guided their doctors on how to treat their RLS using my book (I actually wrote the treatment chapters with that in mind).

You do seem to have a problem with your current doctors’ lack of expertise for treating RLS. Unless you are in an HMO (which of course limits your access to physicians), you should be able to find a doctor who is better versed in RLS treatment (and is more caring). With proper treatment, almost all RLS patients can achieve substantial to complete relief of their symptoms. It does however take considerable expertise and experience to treat more difficult cases such as yours.

Magnesium has not proven to be helpful for treating RLS. Sleeping pills (other than Klonopin) can be helpful as once you are asleep you clearly cannot be suffering from RLS (or back pain or any other symptoms that require you to be awake and aware). Typically, we recommend the non-benzodiazepines (Ambien, Lunesta) which are minimally (at worst) addictive compared to the benzodiazepines. However, it would be better to treat your RLS symptoms more directly such that you might need sleeping pills only occasionally.

Sent: Monday, October 05, 2009 8:38 PM
Subject: Clonazepam for RLS?

My doctor prescribed clonazepam for my RLS but he didn't say whether this is addition to my Mirapex or instead of it. I tried it without my Mirapex and the worst night of my life.

Linda M.

Klonopin (clonazepam) is a drug that I virtually never use for RLS. There are very few RLS patients who actually find that the benzodiazepines actually reduce RLS symptoms. Rather, they merely help the RLS patient fall asleep (all benzodiazepines can be used as sleeping pills even though most of them are approved for anxiety/sedation instead of insomnia) and of course, you cannot be bothered by RLS symptoms (or back pain, etc.) while asleep. However, Klonopin has a 40 hour half-life which typically results in next day sedation which can worsen as more daily doses are taken. Furthermore, Klonopin is a fairly addictive drug.

If sleeping pills are necessary, shorter acting ones such as the non-benzodiazepines (Ambien, Lunesta) are much preferred. Typically, if the Mirapex was helping somewhat and not causing side effects, it would be better to stay on the drug and just add a sleeping pill as needed. An alternative choice would be to increase your dose of Mirapex (perhaps to .375 mg or one and half of the Mirapex .25 mg tablets).

Sent: Monday, October 05, 2009 9:09 PM
Subject: Risperdal and RLS?

I was just prescribed Risperdal for Bipolar. Does this have a good or bad reaction on RLS?

Diana B.

Antipsychotic medications (more details on our RLS Treatment Page) such as Risperdal typically worsen RLS. This is a very individual issue and you the Risperdal may not exacerbate your RLS if you are lucky. There is no way to tell until you try the drug but do be aware that it has a significant likelihood to make your RLS symptoms worse.

Sent: Thursday, October 08, 2009 10:18 AM
Subject: Severe PLMD treatment

I am a 48 year old male that has developed PLMS to the point of being defined as severe PLMD. I was also diagnosed with mild OSA (Obstructive Sleep Apnea) and put on CPAP with a very low setting. This was just to remove the mild OSA piece from the equation. My GP put me on Klonopin 1mg. It knocked me out and made be feel like a zombie the next day. I cut the dosage in half and still felt drugged. I stopped after 2 weeks.

I got worse and found on this website the drugs of choice are Ambien or Xanax and Requip or Mirapex. Talked it over with my GP. I tried Mirapex with no benefit or adverse effects. I tried Xanax and still woke up during the night. I thought I found the right combination with Ambien and Requip but I started to feel drugged and sluggish after a couple of months. (the Requip was a ramp up dose starting at .25 mg and got up to 2 mg) I dropped the Requip and stuck with the Ambien and the CPAP. I also took drug holidays of varying frequencies.

I got to the point I could not take Ambien due to feeling as bad on it as I did without it. I went to a board certified sleep doctor yesterday and he put me on .5 mg of Klonopin and .5 mg of Requip. Today, I feel like I slept as I have some energy but I still feel drugged a little. After giving the sleep doctor a detailed history, he said I was the most complex case he had seen.

I am starting to feel hopeless. When I find a combination that seems to work, it will make me feel worse after time. Any comment on the Klonopin and Requip combination? Any other suggested option for severe PLMD?

Also, thank God for this site. I saw where one response to a question stated that the person with RLS/PLMS needed to be checked for low B12, iron and calcium. I was significantly low in B12 and calcium levels. That has been treated with shots and supplements. Is there a chance that my low B12 levels caused permanent damage to my CNS that is causing my PLMD?.

Kent

I am not sure where you saw an answer on our website that recommended checking for B12 or calcium as possible causes of PLMS. They have never been linked to RLS or PLMD but serum iron is important (this should be evaluated with a serum ferritin level which is the most sensitive test for iron deficiency and may be low even when the other tests are normal).

Your case is actually not that complex or unusual as PLMS and OSA occur together often as they are both common problems. The problem we have here is determining whether the PLM are actually causing a sleep disturbance which can then be defined as PLMD (the D stands for Disorder and implies disability from the PLM). This is a very controversial topic as many sleep specialists believe that PLM are merely an interesting phenomenon and do not actually disturb sleep and therefore do not result in next day symptoms such as fatigue or drowsiness. In your case this is made even more problematic as I do not have the sleep study or PLM scores.

Although Klonopin was the first drug suggested for use in PLM (a letter written to a medical journal in 1979), it actually does not decrease the PLMS (like Mirapex and Requip) but rather decreases the arousals (changes to lighter stages of sleep) that may be caused by the PLMS. This drug has a half-life of 40 hours which is why you feel so drowsy the next day. It is a drug that most sleep specialists do not use these days and I would not recommend for treating PLM, RLS or any other sleep disorder. Furthermore, it may worsen OSA and your CPAP may not be sufficient to cover the worsened OSA (that could also result in next day sleepiness). Shorter acting non-benzodiazepines such as Ambien (which did not help you) or Lunesta are far preferred.

It is hard to know what you should do at this point. As you did not improve with Mirapex, it is less likely that the PLMS is actually affecting your sleep (unless this drug is causing next day sedation as a side effect which it can do in a small percentage of patients). The only way you can really determine the correct drugs or dosages of these drugs for treating your PLM (if indeed that is even necessary at all), would be to go on the drug and see what it does to the PLM. This can be done by a repeat sleep study (very expensive and you would possible need several to determine the correct dose) or actigraphy (motion sensor on your ankle which is done at home and very inexpensive so that it can be repeated many times). If Mirapex or Requip (taken alone) eliminate most of the PLMS and you still feel sleepy and fatigued, then you may need to look for other problems that may be the cause (which may be very likely).

Sent: Wednesday, October 14, 2009 7:41 AM
Subject: My RLS symptoms

I have been taking Requip and now its generic for several years. It does help my RLS but it is best if I take it preventatively; one at 3 PM and another at bedtime and sometimes I need more. My doctor has prescribed it in like that so that I have this low dose to take more frequently. I also have a similar feeling, an urge to move in my right scapula area (just the right) which also involves much snapping and popping of ligaments (as best I can explain it). It is very annoying, tight, dangerous to have this while driving.

The Requip also calms the scapula area. My massage therapist feels a definite knot deep in the rhomboid muscle. I have had cortisone injections in the area but they did little good, and I have had lumbar injections as well for low back pain. The low back is a completely different feeling than the rhomboid/scapula. The RLS affects my right side while the legs are both involved.  Do other people complain of the RLS symptoms other areas of the body?

Becky E.

It is quite common for RLS symptoms to spread from the legs to other body parts. Typically, the arms are the most frequently area that is involved but any body part can be affected.

However, if since taking the Requip, you have found that the RLS symptoms have spread to your back and the symptoms are occurring earlier in the day then it is likely that you are experiencing augmentation (worsening of RLS due to taking the Requip). If that is the case, you have to be careful further increasing the Requip as the augmentation may worsen.

Sent: Wednesday, October 14, 2009 3:33 PM
Subject: RLS symptom, or drug side effect?

I am a 61 years old female and an RLS sufferer for about five years. I started treatment with Requip, which controlled my leg symptoms with a mid-range dose. I still would suffer every evening from a restless, anxious FEELING making it impossible to just sit and relax even though my legs felt okay. I was bored, irritable and bothered by stimuli like a fairly loud TV program, bright lights, etc.  I am also sleepy from a long day and my medicine but unable to relax. Who wants to go to bed at 7 pm?

My neurologist switched me to Mirapex which seemed initially to bring an improvement but after a few weeks I found myself in the same situation. I am not normally an anxious or irritable person, and feel fully myself in the mornings. What is this?? An effect of the dopamine agonists or a part of the illness?

I should add that I am unable to ever take a nap after 10 or 11 am whereas I used to be able to nap most anytime. While I am grateful that the medications settle my legs and that I am able to sleep overnight, I literally have no nice evenings at home. My husband is very understanding but I am really a terrible companion.

Nadine (Wisconsin)

It does sound as if your irritability is being caused by the dopamine agonists, Mirapex and Requip. This is not a usual side effect of the dopamine agonist agonists. You may want to discuss changing to gabapentin or Lyrica to control your RLS symptoms.

Sent: Thursday, October 15, 2009 11:23 PM
Subject: Horrible RLS despite Requip?

I am 67 and have RLS for as long as I can remember. Though it used to be just several times a week as I have gotten older it has gotten worse. Now it is all day and twice as bad at night.  I also have to pound my legs to get relief. I find pounding my heel on the floor helps, stretching exercises and every thing everyone else has mentioned helps. Sometimes I think it will be good when it is just all over. 

It scares me to think I have to suffer this the rest of my life and it just keeps getting worse. I am afraid to fly anymore. How can I walk up and down an airplane aisle? I have to get up and walk at the dentists. I think the mental wear and tear is as bad as the RLS. I have tried everything and this last year started taking Requip. It does help but takes about two hours to take effect so I have started taking 1/2 of a 1 mg tablet in the morning, about 3-4 p.m. and 1 mg at night. It is hard to time them just right though because if I wait too long then it is HORRIBLE.

Arlene C.

It sounds as if you have severe RLS symptoms that need more medication than you are currently taking. It does take 1-3 hours for Requip to become active (longer if taken with food) so you do need to use the medication well in advance to prevent the RLS symptoms from occurring. We do have many patients who take the medication 3 times daily to get coverage throughout the day. Alternatively, you could take Requip XL which is a 24 hour preparation of the drug which should work well in your case (even though it is only FDA approved for use in Parkinson’s disease).

Sent: Friday, October 16, 2009 2:00 PM
Subject: PLMW (Periodic Limb Movements during Wake)

I have had RLS for many years and have found that antidepressants have made them worse but not so bad that I can't deal with it. I get up at night when the symptoms start and do some exercises using my leg muscles and stretching. For a while now I have had leg jerks during the day. Caffeine makes them worse and I can feel twitches all over.

I have been quite concerned about the leg jerks. After researching online I came across PMLW and think that this is what is going on. Everything is worse with stress. Sometimes I have what feels like torso jerks? Do these fall under the PMLW symptoms?

Mary B.

I cannot say for sure if you have PLM without seeing your leg jerks but PLM are very common in RLS patients and the often occur while awake. There is no reason to be concerned about them as they are merely a nuisance rather than a serious medical problem.

Sent: Friday, October 16, 2009 11:05 PM
Subject: Weight gain and RLS medications?

I am currently on Mirapex for RLS. I only take 1/2 of a .25 mg at bedtime. It works great for my legs but I have gained over 10 pounds and it is still rising. I also have swelling in my arms, legs and feet. Any suggestions on different medicine that don't cause weight gain? I have tried Gabapentin and it didn't help my RLS. I have read that Lyrica causes weight gain often.

Lisa D.

Unfortunately, weight gain does occur with both Mirapex and Lyrica. It still might be worth trying Lyrica (or even Requip, the other dopamine agonist that could also cause weight gain) as you never know if you will have that side effect with another drug (even though it has the potential).

The only other choice would be an opioid which does not cause weight gain. At a low dose this would be quite safe even on the long term but you and your doctor would have to decide if that is reasonable for you.

Sent: Saturday, October 17, 2009 5:40 AM
Subject: Re: Knee replacement surgery

I had a total knee replacement 4 weeks ago. Doing well, except at times my RLS acts up. I take .25 mg Mirapex twice a day, and .5 mg clonazepam at bedtime. I also take tramadol if needed. But I'm not taking the tramadol now as I am taking Percocet after having the surgery. I have cut down on the Percocet, taking it maybe, once or twice a day as I need it for pain.

At times I have RLS early in the morning, and in the evening. Should I increase the Mirapex? Maybe taking one in the morning, one in the afternoon and one at night???? Or just wait until I'm finished with the Percocet and see how things work out. I'm so afraid of augmentation and have read that increasing the dose of medications can cause it.

Betty B. in West Virginia

Typically, the Percocet should treat the RLS quite nicely. As you decrease the Percocet, the RLS will likely worsen if you are not active. You may want to use the tramadol until your activity level is back to normal as you are already on a significant dose of Mirapex.

Sent: Saturday, October 17, 2009 4:36 PM
Subject: Mirapex not helping RLS?

I have been on Mirapex for years. I started off at a low dose, and am up to 2 mg at night. However, a year ago I moved to Prescott, AZ (altitude about 6000 ft) and in the last 5 months, the 2 mg dosage does not relieve my restless legs. I don’t think I should increase the dosage but am very concerned that it is not working. Also, it has become increasingly uncomfortable to drive any distance in a car.

Jan,
Prescott, AZ

Altitude is not known to influence RLS symptoms. It may be more likely that the stress of moving may have exacerbated your RLS.

Nonetheless, whatever is causing your worsened symptoms there are only a few choices to treat them. You can either increase your dose of Mirapex (which I would not recommend as you are already on a very high dose and further increases are less likely to help and more likely to result in further problems) or add another medication such as an anticonvulsant (gabapentin, Lyrica) or an painkiller (opioids, tramadol).

It is also possible that your high dose of Mirapex is causing worsening of your RLS (called augmentation) and reducing the dose or getting off it should be considered. You would need to change to another class of drug in that case.

Sent: Sunday, October 18, 2009 9:22 AM
Subject: RE: Mirapex

Would you suggest Requip as a possible medication to switch to? And if so what dosage?

Jan

Given your current high dose of Mirapex, it is less likely that switching to Requip, which is a similar dopamine agonist would be helpful. It typically takes 2-3 times the mg dose of Requip to equal the potency of Mirapex (which would thus require a very high dose of Requip).

Sent: Sunday, October 18, 2009 7:23 AM
Subject: Requip side effects

I am 57 and have had RLS since I was 13. I've taken Valium, Sinemet and Mirapex, but currently take generic Requip, 2 mg in the daytime and 4 mg at night. I've been on it for at least three years and been pleased because it hasn't caused the nausea I had before. However, gradually I've had a cough develop, so my question is whether or not Requip can cause coughing as a side effect.

The dry hacking cough usually comes on at night after I've taken the Requip. I also have a type I Chiari malformation, so the coughing causes severe headaches. I've tried aspirin and Excedrin with only partial relief. Maybe it's the Chiari that is causing the cough? Any insight would be helpful.

Sally F.

Although coughing has been reported with Requip, it occurs at about the same frequency as does placebo (sugar pills) in the studies done on Requip. I have never seen cough as a side effect of Requip but anything is possible.

It is more likely that your cough has nothing to do with being on Requip or your type I Chiari malformation. Your cough might be due to post nasal drip, asthma, or perhaps even from taking a new blood pressure drug like lisinopril. You should discuss this problem with your doctor.

Sent: Monday, October 19, 2009 1:52 PM
Subject: Insomnia problems

I have been taking Mirapex (.375 mg) for my RLS for the past 10 years. I have suffered from insomnia for that same time period. I have tried cognitive behavioral therapy and sleeping pills but I still have major problems when I am off the sleeping pills. I was wondering about the percentage of people who suffer from insomnia because of taking Mirapex?

I am really nervous about going off the medication because it has been working and my life was hell without it. What does research show about Mirapex causing insomnia? Does Requip have the same problems?

Beverly

Both Requip and Mirapex can cause insomnia. The percentage of patients suffering from this problem is fairly low (just a few percent above that of placebo) in the studies done on these drugs. The more typical problem is sleepiness.

The other issue is that after years of insomnia induced by RLS symptoms, just taking care of the RLS does not always resolve the conditioned insomnia (hard to reverse the years of negative conditioning). Therefore, it is difficult to tell what is causing the insomnia and changing to Requip may not be that helpful (although you can’t say for sure until you try it).

DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

   Click to go to the RLS Homepage,  RLS Treatment Page