Patient letters on RLS symptoms and remedies- Page 67

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Sent: Sunday, May 07, 2006 10:13 PM
Subject: RLS not doing well with Mirapex?

I wrote you a letter a few weeks ago stating that taking Mirapex and Lunesta was giving me the best sleep that I could remember. That only lasted for about five weeks I again experienced augmentation with the Mirapex and it quit working for me. The Lunesta only works with the Mirapex so I quit taking it also. I ended up with rebound RLS that was the worst I have experienced. I was up for five days and couldn’t sit or lay down, all I could do was pace the floor.

Will I ever get back to were I was before I started the meds or are the symptoms worsened permanently?  I also have taken Requip and Sinemet with similar results. Vicodin still works but I have a history of alcohol and drug abuse and don’t like taking it for too long. Also in the past when I have taken vicodin for a few days and then stop I also seem to experience rebound RLS. Is that possible? Again, your web site is very helpful and thanks for it.

Mike H.

A Medical Reply

There are two main available choices for your problem. The first is the painkillers. You already have had some success with Vicodin but of course, with your history of drug abuse, that may present some difficulties. Ultram is another choice as it is significantly less habit forming than the opioids.

Otherwise, you may want to consider Neurontin or other anticonvulsant drugs. They often work well and are completely non-addictive.  The problems that you are experiencing should be temporary and not long lasting.

Sent: Sunday, May 07, 2006 6:34 PM
Subject: RLS or PLMD

I seem to have a leg disorder that I cannot seem to describe. It is not RLS because it does not require for me to getup and walk etc. I do cross my legs often while sitting.  IIt seems that when I lay down to sleep at night, I get this rigidity in my right leg, thus preventing me to fall asleep. When I elevate my leg, it sometimes seem to go away.

My doctor has put me on Carb /levo which I understand is for Parkinson's Disease. It seems more like a PLMD (periodic leg movement disorder), but I my legs do not jerk. I get a sense of rigidness in my legs, and urge to constantly move. Thus I toss and turn. I also have insomnia, for which I take triazolam, and when I wake up the next morning, I am very groggy.

MMJ in CA

A Medical Reply

You may still have RLS as the key component to RLS is the urge to move your leg when at rest. You do not have to get up and move (although that is often the preferred form of movement for most RLS sufferers) but rather any movement of the affected limb will usually provide some relief.

You do not have (at least from your description) PLMD which are actual leg movements (or jerks) that most often occur while asleep but can also occur at rest while awake.

Although Sinemet (carbidopa/levodopa) works for many RLS sufferers, it often causes worsening of RLS (called augmentation) so Requip or Mirapex are much better choices for daily RLS.

If the triazolam makes you groggy in the morning, a better choice for you insomnia may be Sonata or Ambien (which have even shorter half-lives).

Sent: Monday, May 08, 2006 4:10 PM
Subject: Therapy for RLS

Have you heard of Enhanced External Counterpulsation Therapy for RLS?  I am wondering if it has helped anyone.

Vera P.

A Medical Reply

It seemed at first that this technique, which is used for patients with congestive heart failure would be beneficial for RLS. Counterpulsation involves pressure (by inflatable cuffs) on and off over the legs.

The first non-controlled study (no placebo group) yielded good results but subsequent controlled studies (preliminary results known so far only) have not panned out. We await more data on this treatment before passing judgment.

Sent: Tuesday, May 09, 2006 12:02 PM
Subject: Treating RLS with more than one medication at a time?

I am a 36 year woman, who has had RLS since I was a child. My mother also has it, as well as her mother and when my Great - Grandmother was alive she experienced similar symptoms although she was never given an RLS diagnosis. My RLS is moderate to severe at this point, and I am currently taking .75 milligrams of Requip. I have tried taking higher does of Requip and unfortunately it caused vomiting.

I believe I am rebounding from the Requip and I am trying to do some research so that I can talk with my doctor about my best treatment options. I am curious as to what your opinions about using more than one type of medication to treat RLS and what combination you consider works the best.

Melissa M.

A Medical Reply

We often use more than one medication for RLS. This is because of limitations due to side effects (such as your case) or limited effectiveness of some medications (in given individuals). If you need another medication, a painkiller or anti-seizure medication would be next on your list.

If nausea and vomiting limit your use of Requip, consider taking it with food which may reduce or eliminate this problem. If that does not work, then a change to Mirapex may be helpful.

You do not say why you think you have rebound. That problem is easily solved by splitting your Requip dose into two doses that should resolve any problems with rebound (worsening of symptoms at the end of the RLS drug's effective dose range).

Sent: Tuesday, May 09, 2006 3:09 PM
Subject: Advice on Medication-Safety of it

I am 38 years old and have just been diagnosed with restless legs syndrome. I have been through a terrifying year being first diagnosed with depression and subsequently prescribed antidepressants which lead to psychosis and attempted suicide. I was then prescribed anti-psychosis medication. I continued to take the prescribed medication for a couple of months and then decided to take myself off of them.

I am left with a chronic sleeping problem. I was on Immovane but it stopped working. I had a sleep test and was told that I have RLS and that Mirapex and clonazepam is the solution to my sleep problem. I am really hesitant about the Mirapex since I have read that it could cause Psychosis and Hallucinations. I am also concerned that using it may work for a while and then stop working. I am tired of experimenting with my brain. I want a solution not a Band-Aid.

A Medical Reply

Many RLS patients are diagnosed with depression and anxiety often due to lack of treatment of their RLS symptoms. Most all the antidepressant and anti-psychosis (neuroleptic) medications worsen RLS, so you must be very careful taking them.

Tolerance to Immovane usually does not occur. It is more likely that your sleep problem may have worsened overpowering the effectiveness of that drug.

Mirapex is generally a very safe drug. It does not cause psychosis but at the higher doses used for Parkinson's disease may rarely cause hallucinations. That is not known to occur at the lower doses used for RLS. Right now, Mirapex and Requip are the drugs of choice for RLS and considered to be the most effective and safest of the available RLS drugs.

I would be more reticent to take clonazepam (Klonopin) as it is a very long acting (half-life of 30-40 hours) drug that has a high potential of causing tolerance and dependence.

Sent: Wednesday, May 10, 2006 5:57 AM
Subject: Joint pain and RLS?

I am 62 with gradually accelerating RLS symptoms for over twenty years. The regimen which has provided the greatest success has been Mirapex (.125 at 4 p.m. and 7p.m.) with Lunesta or Ambien for sleep.

Currently in physical therapy for an unrelated I-T band problem (probably one leg shorter than the other), I have considerable pain in my hip and knee. This has wrecked havoc with RLS so that I am awake all night, Mirapex and Ambien and Motrin notwithstanding. Any pain (arthritis, soreness from vascular surgery, etc.) exacerbates my RLS.

What could I try to get through this? If I try increasing Mirapex – which is now quite a low dosage now, I’m afraid of augmentation. Might my original regimen will work again once leg pain has abated?  I don’t think my doctor will go for codeine, but I have some odds and ends left over from the dentist.

Problems with meds so far:  Requip & Mirapex & Ultram: cause insomnia, Neurontin: dizziness

Thanks for your generous work in this sleepless world!

LS

A Medical Reply

The best treatment for your short lived RLS and pain would be a narcotic. Vicodin would be better than codeine. Most doctors may not prescribe it for RLS (due to lack of knowledge on how to treat this disease) but it should not be a problem for your orthopedic pain.

Another option would be to increase your Mirapex dose by a small amount, such as an additional .125 mg (which of course will not help your orthopedic pain). Although we feel that augmentation likely occurs more with increasing doses of dopamine agonists, you are still on a fairly low dose.

Your RLS should return to baseline when your orthopedic problems resolve.

Sent: Wednesday, May 10, 2006 10:04 AM
Subject: Compazine and Phenergan with RLS?

Can you tell me if the two drugs Compazine and Phenergan are contra-indicated for RLS? As I understand, both are in a class of drugs called phenothiazines. My doctor (not my RLS doctor) asked if I would check into it.

Pat L.

A Medical Reply

Both drugs tend to markedly worsen RLS as do most all of the anti-nausea drugs. The newer (and unfortunately much more expensive) anti-nausea drugs, Kytril and Zofran work very well and are RLS friendly.

Sent: Thursday, May 11, 2006 7:47 AM
Subject: So Many Drugs - So little time!

I am a 60 y/o female and have had RLS since my early 20's. As the symptoms worsened with age, I finally asked a neurologist for something to control them. He warned me that once I started taking meds, the symptoms would exacerbate and Oh how right he was!! He started me on Sinemet but the side effects where severe. He then tried Requip which I have been taking for at least 5 years now. I start at 10 AM and take them (0.5mg) every 3 hours until bedtime when I double the dose.

The accumulation of the drug has me exhausted by the end of the day. Now my new neurologist wants me to cut back on Requip and has added Amantadine (anti-viral) and Klonopin. He had to get the dosages from pharmacists and others he called while I was in his office. I'm not sure he knows how to prescribe all these drugs and I am afraid to take so many. Requip has been the best for me and I've learned to live with having no life after 5 PM. Any advice

Jamie T.

A Medical Reply

First of all, except for Sinemet, taking RLS medication generally does not lead to worsening RLS problems. Dopamine agonists (Requip and Mirapex) may cause augmentation (worsening) of RLS symptoms but that only occurs in a minority of cases.

Amantadine is not a proven RLS drug. There are a few case reports indicating that it may be effective but otherwise very little experience exists for the use of this drug for RLS. Klonopin is widely used for RLS but the only benefit from this drug is that it puts people to sleep (and shorter acting newer non-benzodiazepine sleeping pills are much preferred for that purpose). If you are exhausted now, you will likely be much worse on the very long acting (30-40 hour half-life) Klonopin.

Neurontin (and other anti-seizure drugs) are also helpful, but sedation is also a common side effect with these drugs. Your best bet would be to try adding painkillers (in low dose) and then seeing if you can lower your Requip dose. You may also want to consider a trial of Mirapex instead of Requip and see if you tolerate that better.

Sent: Thursday, May 11, 2006 2:47 PM
Subject: RLS better with Mirapex!

I have RLS .  Mirapex .5 mg works like a charm for me. It's completely transparent, no side effects, completely eliminates symptoms.  Further, it's tasteless! Just chew and swallow an hour before bedtime.

A Medical Reply

It is good to hear your success for treating RLS. Mirapex is about to be FDA approved for RLS which should make it more available for this problem.

Sent: Friday, May 12, 2006 11:46 AM
Subject: Ultram-narcotic or not?

I have had RLS for years, and have been dealing with the "education" of my doctors for quite a while. My PCP insists that Ultram, which I take,is a narcotic. I have seen all kinds of info on this , and I get all kinds of different answers. I trust your opinion. Once and for all, is Ultram a narcotic or not? It really helps my legs, and I don't want to give it up.

Thanks,
Donna/VT

A Medical Reply

First of all, it should make no difference whether or not Ultram is a narcotic for you to be able to use it on a regular basis for RLS. In low doses, narcotics are very safe and dependence and tolerance rarely if ever occur (except in patients with a history of drug abuse).

Ultram is very difficult to categorize. It acts extremely weakly on the opioid mu receptor (the receptor that opioids act upon to produce pain relief) and blocking this action with naloxone (an opioid receptor blocker) does not have a very significant effect on Ultram's ability to relieve pain. It is believed that Ultram's main action on relieving pain is due to other actions (such as through the noradrenalin or serotonin systems) rather than through the opioid receptors.

Therefore, it is quite confusing. Ultram is often called a synthetic opioid painkiller but it has very little opioid action and seems to be producing its effects (on pain and RLS) through other means. It also has a much lower dependence/tolerance profile than the narcotics. Whatever you call it, Ultram is often an excellent drug for RLS and at the doses used for RLS patients, addiction is a rare (if ever) problem.

Sent: Saturday, May 13, 2006 11:48 AM
Subject: RLS, peripheral neuropathy and panic disorder?

I have suffered with RLS for 15 years. it started to get real bad this past month. I went to a neurologist and he said I have the neuropathy also. He knows about my panic disorder of course. I see other doctors as well. I've been on Requip for a year, it really helps. The neurologist put me on Neurontin for the pain I have in my legs and back. That also helps very well. I worked my way up to 300 mg 3 times a day .

I am also on Paxil 40 mg, take 1 every morning. Ativan 0.5 mg twice a day as needed. Detrol 1 a day in morning. I take the Neurontin 3 times a day as I said. At night before bed I take the Neurontin and the Requip. The Requip is 1 mg. Since taking the Neurontin I seem to be getting my panic attacks back. Not that often, but when I get them there bad.

The fast heartbeat, feels like someone is sitting on my chest. Shortness of breathe. The anxious feeling that goes thru my body is so intense, I almost fall to the floor. The tingling in my hands and feet. At times it has felt like electricity going thru my body. This morning I had a bad attack. Do you think the Neurontin would be causing the panic attacks.

Maybe my dose of Paxil has to be increased. I've talked to my doctor's about this, and they said the Neurontin wouldn't be causing the panic attacks. And there shouldn't be any interaction between the medicine's that I take. I know one thing ,my panic attacks were so bad I can't go thru that again. And my heart rate with these is always 150 beats a minute and higher. The Neurontin really helps and I would hate to have to stop taking it.

Cindy

A Medical Reply

Anything is possible but Neurontin is not known to be associated with panic attacks in any way. You may need an increase in your Paxil but watch out for worsening of your RLS (SSRI drugs like Paxil often worsen RLS).

Sent: Saturday, May 13, 2006 5:18 PM
Subject: RLS Secondary to Post-Polio?

I am a 38 year old polio survivor. I contracted polio as a result of the oral vaccine when I was a child. Now, many years later I'm suffering from Post-Polio Syndrome and as a result, I have RLS as well. There are days that the twitchy, creepy, crawling feeling in my legs just drive me up a wall. With the original Polio infection I had no lasting deformities, just general weakness now years later on the side that was mainly affected from the original disease.

After doing research on RLS to satisfy my own curiosity, I've determined that the medications that my doctors have had me on for the past several years are contradicting each other and some changes need to be made.

I'll start out by saying that my husband is active military and with that we've had to move around a bit so I've had to break in a new doctor every couple of years. I have to be my own advocate and know what treatments work best for me and what treatments are garbage. Most of the time in military facilities I'm able to get the doctors to see things my way and they just continue the status quo on what's working at the time and don't change anything. If something stops working we go back to the drawing board and try again.

While we were stationed in Germany I was fortunate enough to see some pretty awesome neurologists but they totally missed the boat on the RLS diagnosis. When we moved this last time I started going to a new doctor off of the base and he sent me for a sleep study and finally diagnosed the RLS. He immediately prescribed Requip for me and it worked great. But, because of some of the other medications I've been on for long term, he decided to take me off of it and try Topamax instead. I've been taking Topamax twice a day because my doctor wanted to wean me off of the Requip. He said it would be better for me.

I've been taking Trazodone for insomnia for years along with Ultram for pain. The Ultram is for both the RLS and the PPS symptoms of nerve and muscle pain. However, after years of using the Ultram, I can honestly say that it's not working much anymore. When I first started on this journey my doctor in Germany prescribed Baclofen and I have to say that it's one of the one things that really works for me.

Unfortunately for me, I have serious allergy issues and am on long term allergy medication and screws with the RLS symptoms. Is there hope or suggestions you can offer? I'm due to make an appointment for medication changes and a follow-up with my doctor this month and would like some input from someone else in the know before I go in to see him.

Teresa R. in Texas

A Medical Reply

It is very hard to understand why your doctor stopped the Requip. This drug does not affect any other drugs so that is not a concern. Unless your doctor has another good reason (that I am not yet aware of) to keep you off of this drug, you should probably consider going back on Requip.

Baclofen is not known to help RLS so it is hard to explain why it works for you. Topamax and other anti-seizure drugs often help RLS but that does not seem to be the case in your situation.

Allergy medication usually worsens RLS but the newer antihistamines that do not cross into the brain (Claritin, Clarinex, Allegra) generally do not worsen RLS.

Sent: Sunday, May 14, 2006 3:25 AM
Subject: Med suggestions???

I'm new to the site but not new to the pain of RLS. I have simply suffered for years before finally talking to my doctor.

I was initially given Sinemet which worked awesome for a number of months. I went from 1x at night to 3x a day and now squat! Augmentation has set in and so I begin the game of finding the right meds. It should be noted my RLS is 24/7 and very painful.

I spoke to my doc after the Sinemet stopped working and gave her the medical info booklet I got when I joined. My doctor is awesome, she loves a challenge and wants to help me tackle this. Her words were, "I love RLS!" She was happy I brought the booklet and asked me what I wanted to try. On a side note she told me her partner (another doc; both are D.O.'s not M.D.'s) has RLS and takes Mirapex which works for him.

I relayed the info I learned from this discussion group and the booklet. I had taken oxycodone recently which was left over from a surgery and man did that do the trick! She told me she does not want to go with the opioids as of yet due to the DEA.

The DEA closely monitors docs writing opioid scripts. I was told if she writes me monthly scripts with potentially increasing doses she, and I could find ourselves under investigation in which she could lose her license. If we try all the other commonly prescribed drugs (all conventional treatments) for RLS first and they fail then the opioids will not be a problem. Basically, we need documentation of our attempts to start at the beginning and working our way through. If I find a drug (or combination of) along the way that works then great, if not we are protected if we reach the point of opioid use which she is not opposed to.

I understand her position and will give it all a shot first. I, like most, would simply like to skip to the oxycodone because I know it works and I have no addiction issues. OK, so this is what I was given:

Samples of Mirapex, Requip, Tramadol and a scrip for Gabapentin. NOT ALL TO BE TAKEN AT ONCE OF COURSE. I am starting with the Mirapex and am taking the Tramadol (Ultram ER 100 mg) to aid with the pain.

Because I experience pain 24/7 I am taking the Mirapex (.125 mg) each evening, morning and afternoon. I take the Ultram ER each evening and in the morning. Needless to say this is barely doing anything for me except making me drowsy, restless and feeling sort of sick.

I plan on staying on the .125 dose of Mirapex 3x a day for a week then kicking it up to .25 3x a day so I can adjust to the sides better. I will do this before making a final judgment and moving on to the Requip (2 week sample pack).  I do have another issue with all the meds...I am a police officer and my employer gets very nervous about what I am taking. I have a feeling they will not let me work the road if on the Mirapex due to the warnings about falling asleep while driving (not good). This may force me to move on to the Requip regardless.

Gabapentin question...what's the deal with the weight gain issue??? Is everyone on this drug experiencing this???

For those concerned about the Tramadol; The Ultram ER only dulls the pain and does not work for more then 5 or 6 hours for me. I had my doc call in a script for the regular Ultram 50 mg to see if this faster working version may work better for me.

Now you have heard my plan of attack does anyone have any suggestion on combinations of drugs or dosages???

Rosco P.C.

A Medical Reply

Your doctor is essentially correct about the use of narcotics for RLS. Other drugs should be tried first and if these are not successful, then narcotics can be used. If this is all well documented, no doctor should have any trouble with the DEA.

Mirapex and Requip (both are dopamine agonists) are actually very similar in their side effects (sleepiness for some and insomnia for others) so there is no reason to switch to Requip from Mirapex if it is working well for you.

Your plan is quite reasonable. Increase the Mirapex dose slowly and see if you still need any additional medication to treat your RLS. You may still need occasional doses of a pain killer from time to time.

Neurontin usually does not cause weight gain. Its major side effect is sleepiness/drowsiness.

A Reply from Rosco

Sent: Monday, May 15, 2006 8:53 AM
Subject: Re: Med suggestions???

Thanks for responding so fast. I have found so far the Mirapex and Tramadol are not doing anything for me as of yet (Mirapex at .125 mg 3x a day and Ultram ER 100 mg 2x a day).

I had my doc call in a script for the faster acting Ultram 50 mg to give that a try. I did break down and add the Gabapentin 300 mg 1x at night and found it works quite well. It puts me out and the next morning I feel like my head is 3 feet thick (slight headache as well...guess this is all normal). Not sure using this in the daytime is going to be an option though. Its very hard to wake in the am on this stuff, makes me worry about hearing the alarm clock.

Next week will increase the Mirapex to .25 mg 3x a day...is this too fast??? Should I add one .125 mg pill at a time every few days???

Rosco P.C.

A Medical Reply

The regular Ultram may work better for you as it has higher peak blood levels. You may get used to the next morning effects of Neurontin, but if not, you may want to consider discontinuing this medication.

Increasing each dose of Mirapex by .125 mg each week is reasonable. Some go more slowly and increase by 1/2 of the .125 tablets, but that may be unnecessarily slow for most.

Sent: Monday, May 15, 2006 7:25 AM
Subject: PLMD/RLS treatment?

I seem to have an unusual RLS/PLMD problem. Five years ago I was diagnosed with PLMD. For me the PLMD occurs at the onset of sleep and jerks me awake each time I fall asleep. I tried Mirapex and Requip to no avail for the problem. I would use Ambien and sometimes Klonopin but for some reason I would only sleep 2-3 hours with those.

After about 6 months of this condition I found a non-drug remedy whereby I would tilt my head back and brace it into the back of my neck/shoulder and this would not get rid of the jerks but seemed to allow me to get through them. My physician had no idea why it worked but it did for 5 years. Occasionally the jerks would get strong and I would use Ambien on an as needed basis, but very little. For those five years I slept well.

A month ago the RLS came. The sensations in my legs are noticeable but not hugely bothersome yet. The problem has been that it has disrupted the PLMD. I now find that when I use the tilting/bracing of my neck, there is just this strange clicking noise in my head and I don't fall asleep (I know, it is strange). After a few times of trying to fall asleep this way the strong jerks come back and I am back to where I was with sedatives. I have tried Mirapex and Requip again to no avail.

Any thought or suggestions would be most helpful,
Kevin O.

A Medical Reply

You do not say what dose of Requip and Mirapex that you used. It is possible that you may need a higher dose to relieve the PLMD problem. A second choice to be used (or even added to one of the dopamine agonists above) is Neurontin or one of the other anticonvulsant drugs. These drugs may work well for RLS/PLMD used alone or in combination. It is difficult to explain what is going on with the return of your PLMD/RLS problems and the clicking in your head. I have no explanations for that phenomenon.

A Reply from Kevin O.

Sent: Wednesday, May 24, 2006 2:34 PM
Subject: Re: PLMD/RLS treatment?

My doctor gave me a prescription for Neurontin and it helped immediately with one 300 mg pill before bedtime. This has really helped my daytime symptoms as well that have went away for the most part. Is the fact that the Neurontin worked better than the Requip (1.5 mg) and Mirapex (1 mg) a sign that is a more severe form of RLS/PLMD?

Is there risk of tolerance with Neurontin? Again, my problem happens at sleep onset and the RLS/PLMD doesn't keep me awake, but wakes me up immediately when I fall asleep.

Kevin O.

A Medical Reply

Your response to Neurontin as apposed to the dopamine agonists does not imply that you have a more severe form of RLS or PLMD. In fact, the dopamine agonists are more potent RLS/PLMD drugs than the anticonvulsants. It does make me question whether PLMD is the correct diagnosis (perhaps you are suffering from hypnic jerks or some other disorder?).

Tolerance does not develop with Neurontin but if your underling problem worsens, you may need higher doses of Neurontin (300 mg is a low dose for RLS/PLMD).

Sent: Tuesday, May 16, 2006 8:11 PM
Subject: PLMD worse with Effexor?

Hi, about 6 years ago I had started to have episodes of being very sleepy at times during the day. I was taking Effexor XR. One rainy day while I was driving my car & feeling sleepy, I was approaching an intersection. The next thing I knew, I was through the intersection & a policeman was pulling me over. I had closed my eyes long enough to drive through the red light without knowing it. Well, I went & had a sleep study done. I had some episodes of apnea but not enough to be diagnosed as a problem. I was diagnosed with PLMD. My legs moved every 2 minutes for 7 hours. I was told that the movement disturbed my REM sleep & caused me to be sleepy during the day.

I had no trouble sleeping then or now & actually have the opposite problem that I can sleep very easily at any time & I sleep very soundly. The neurologist also said that PLMD is a side effect of some anti depressants & that Effexor was at the top of the list. I have had problems with depression & anxiety & Effexor has been the answer for me. I do not want to mess with it & risk having those problems again.

I decided that dealing with the sleepiness was better than dealing with depression & anxiety. My psychiatrist disagreed with the theory that the PLMD was because of the Effexor. I tried taking Klonopin at bedtime for 2 months but didn't notice any difference. I still get sleepy at times during the day but not to the point that I can't drive safely. My regular doctor told me about Requip. Do you think that it may help me?

Kathy

A Medical Reply

Effexor is well known to cause increased PLMS (see this article for validation of this issue:
Yang C et al. Biol Psychiatry.. 2005;58:510-514. However, Effexor (an SSNRI antidepressant) is no worse than the SSRI antidepressants (Paxil, Prozac, Lexapro, Zoloft, etc.) for causing increased PLMS.

It is possible that a change to Wellbutrin (which does not cause increased PLMS) may work as well for your anxiety and depression as Effexor without causing PLMD problems. However, it is risky to change from a drug that has already proven itself (Effexor) to one that may not. You would have to decide whether it is worth that risk in discussion with your psychiatrist.

If you decide not to risk a trial of Wellbutrin and stay on Effexor, a trial of Requip would be quite reasonable. Dopamine agonists (Requip or Mirapex) are the most potent drugs for PLMS.

There is one other issue in your case. Many RLS/sleep specialists are not convinced that PLMS does cause enough of a sleep disorder (PLMD) or are responsible for daytime sleepiness. This is still a very controversial issue with considerable variation amongst experts. However, if you improve with one of the above suggestions, then clearly you have been suffering from PLMD.

Sent: Wednesday, May 17, 2006 8:34 AM
Subject: RLS getting worse with Requip?

Just found this site - excellent info. Would you please review and give suggestions. I am 49yo female. As child slept deeply and soiled bed until 12 or 13. Have always had trouble focusing. Was diagnosed with Fibromyalgia approx 12 yrs ago, PLMD 5 yrs ago. I have a great deal of fatigue, frequent headaches, and trouble remembering.
I now take Provigil 200 mg in divided does each day, Paxil 40 mg at HS, Requip .5 mg at HS, Levoxyl 0,15mg in am. My recent lab work was with in normal limits except TSH was low 0.04 (T3,total 126, T-4, free 1.3), sed rate 22 (usually 40 or above for me).

My doctor did not change dose of levoxyl (I'm not sure he reviewed lab results). I started taking Requip 3 months ago and it worked well for several weeks, but now I have difficulty sitting and reading before bed due to severe restless legs. We bought a new bed last December because my husband couldn't sleep in the same bed with my wriggly legs. Now, he starts out with me and says about 3am he has to leave because the legs start moving again. I tried to increase dosage of Requip to 1 mg, but make me very nauseated.

I take multi-vitamins. iron, magnesium, calcium, B12 supplements. Any suggestions?  Would quinine help?  I know I drink too much caffeine,(4-5 /day) - it's a cycle that's hard to break. I'm so tired.

Carolyn R.,
Ocala, Florida

A Medical Reply

You are right that getting off of caffeinated beverages would be very helpful and may be a significant cause of your RLS/PLMD problem. In addition, Paxil worsens both RLS and PLMD. If you could switch to Wellbutrin, you might do a lot better.

You may be getting some augmentation (worsening of RLS) from Requip although that usually does not occur that quickly or from the low doses that you are taking. A change to Mirapex (.125 to .25 mg) may be helpful or a change to another class of drug such as Neurontin or a painkiller.

Quinine is great for leg cramps but does nothing for RLS.  So far, there is no evidence that any vitamins or supplements help except for iron in some patients who have documented low serum ferritin levels.

Sent: Wednesday, May 17, 2006 8:50 AM
Subject: RLS better with prednisone?

I'm a 52 year old woman who's had mild restless leg syndrome for years. I have had problems with sitting still at my desk during the day, or sitting and reading or watching TV at night. It makes it very hard to relax, although I generally don't have a problem sleeping. I take Neurontin on days when it's worse than usual, but it really knocks me out and leaves me groggy in the morning, so I only use it when I need to.

In 2002, I was diagnosed with nephritis in my kidneys, and the doctor put me on Prednisone to treat the condition. All the while I was on the steroids, my restless leg symptoms disappeared completely. As soon as I discontinued, they returned. I am again on Prednisone due to a relapse of the nephritis, and again my restless legs have quieted completely. I have never read anything about steroids having any effect on restless legs. Is this just a coincidence, or has this been reported before?

Deborah J. S.

A Medical Reply

There is no evidence in the medical literature of prednisone (or any other steroid) helping RLS. Nor have I ever heard of such an effect (and I have treated many RLS for worsening of their asthma with Prednisone).

Requip may be a much better choice for treating your RLS as it generally does not cause sedation and is well tolerated (it is also metabolized by the liver so you don't have to worry about your nephritis interfering).

It is possible that your nephritis is worsening your RLS (if your kidney function worsens significantly with your episodes of nephritis) and treating it with prednisone makes the nephritis better and subsequently helps your RLS?

Sent: Wednesday, May 17, 2006 11:38 AM
Subject: RLS affecting arms?

I have dealt with RLS for eight years now.  I can tell you it is directly related to the iron ferritin level, (different from iron in the blood) and stress levels. My symptoms began after the birth of my second child at the age of 32. The symptoms started and I questioned my GP constantly about what was wrong with me. We tried everything from pain and sleeping pills to muscle relaxers and sleeping pills to no avail. Oh sure, I would pass out, only to wake up kicking and thrashing.

It is not painful when it happens, but the only word I can use to describe it is 'excruciating'. When I became pregnant with my third child, I couldn't take anything.  I had a path around the kitchen table I would walk continuously, and often woke up during my pacing by walking into a bookshelf or doorway. Three referrals to other GPs and two neurologists later, I found my hero. He was just starting his business in Georgetown, Texas and my OB told me to call him.

He tested my iron ferritin level. I was supposed to be between 20-356. At the time, I was at 4. Massive iron therapy, and the medicine used to treat Parkinson's patients, Mirapex. During the course of the last four years with Dr. Creel, I have gone from 4 to 11 to 31 to 60. My symptoms get noticeably worse with stress, but wonder of wonders, I have actually gone to bed a few nights, forgotten to take my meds and slept.

Anyway, my symptoms have now moved into my elbows. Now my legs are okay, but my arms start jerking and flailing. Doc says I don't have RLS, but something else because RLS does not affect the arms.

Any advice?
Tracy H.

A Medical Reply

Unfortunately RLS does affect the arms fairly often and may even affect other body parts. As you are taking Mirapex it is quite likely that you are experiencing augmentation from this drug (worsening of RLS due to Mirapex usually occurring with an earlier onset of RLS symptoms). Decreasing the dose or stopping Mirapex may be helpful. You should substitute Neurontin or a painkiller for the Mirapex which usually takes care of the RLS symptoms.

A Reply from Tracy H.

Sent: Jun 6, 2006 7:19 PM
Subject: Re: RLS

Stop taking the Mirapex???  No way!!!  I must have been on twenty different medications for RLS and this one works.  Granted my neurologist says 'I am taking a  considerable dose.  More than what someone with Parkinson's would be taking, but it helps.

What is Neurontin?

Tracy H.

A Medical Reply

Neurontin is an anticonvulsant medication that often helps RLS patients. Your neurologist will be very familiar with this drug. Often, combination therapy with Neurontin and possibly a painkiller may take care of your RLS symptoms so that you may be able to get by with less (or no) Mirapex.

If you do indeed have augmentation from Mirapex, there is a reasonable chance that your RLS will get worse. Therefore you may have to reduce or eliminate this medication sometime in the future.

Sent: Thursday, May 18, 2006 7:28 PM
Subject: Sinemet and Robaxin for RLS?

I thought I would mention that I have taken a number of combinations of pills and have found carb/levo 200 CR with methocarbamol (Robaxin) 250 mg at bed time to work very well. I have been doing this for several weeks, maybe a couple of months now. I sleep as soundly as I did years ago. I do have periods that I need to take one ibuprofen 200 mg along with it to get the edge off. After about 20 minutes I am sound asleep until the alarm clock rings. Taking the controlled release is key! I have fairly severe RLS and about 50% of the time I have to take carb/levo CR 100mg at lunch to get through the day. Before taking this combination, the augmentation had become almost unbearable. I had begun considering changing from a full time job to a part time job.

I believe in nature’s remedies when they are practical. I believe I feel better when I take a good B-Complex regularly. I hope that Magnesium will also help but I have not taken it regularly. I have tried several other things but none of notable difference. I read a letter posted here from a couple of years ago regarding what to take for sea sickness. I have a Motion Sickness Relief Band that I bought from Sporty’s Pilot Shop. It really helps take the edge off of the sick feeling with out having to take more drugs.

Thank you for all the letters and responses on this sight. It gave me some hope when I found it. I am 43 years old and have led a very active life. I have managed a farm and break horses for a hobby. I am now an office manager.

Martha C.

A Medical Reply

Be careful taking your Sinemet CR (carb/levo) as 200 mg is the maximum dose per day before augmentation is very likely (some think that exceeding 100 mg may cause augmentation). Taking extra Sinemet (as you do at lunch time) may accelerate problems with augmentation.

The Robaxin generally does not help RLS unless in helps put you to sleep. If you have not tried Mirapex or Requip, it may be time to switch over to one of these dopamine agonists.

Sent: Friday, May 19, 2006 5:08 AM
Subject: How to withdraw from Mirapex?

I have primary RLS. My symptoms became very bad during my 30's. I'm now 58. I was officially diagnosed approximately 20 years ago and have been on Mirapex and clonazepam at least 15 years, if not longer. I am now on 1.5 mg Mirapex and 1.5 mg clonazepam. I have been on as much as 3.0 mg. Mirapex.

I have been experiencing what I believe is augmentation. I've been having RLS attacks earlier and earlier each day. Instead of going on a higher dose of Mirapex--again--I want to taper off of it and try something else. When I was on 3 mg. Mirapex, I had night terrors. I would scream in my sleep and my husband had a very hard time waking me up. I believe Mirapex has also caused insomnia and extreme weight gain.

I'm seeing a new neurologist. I've had my first appointment with her and was very pleased. I'm experiencing other problems, as well as RLS. We discussed getting of Mirapex and she wanted me to taper off of it and go without anything for a week (to try) to see if I'm really experiencing augmentation, or if I just need a higher dose.

I've just been tapering off for three nights and I thought I would lose my mind last night. The RLS was so intense and I had knots in my thighs. I can't do this and I need help. I wondered if I could get your opinion on what I should do.  I was a complete mess last night. I finally did drift off to sleep on and off. I ended up taking more Mirapex and I'm really nauseated now.

Jan Y.

A Medical Reply

3 mg of Mirapex is really a massive dose for RLS. If you are getting RLS earlier in the day, it is almost sure that you are experiencing augmentation. There is really no purpose to do anything further to determine whether or not you need a higher dose of Mirapex as you have already exceeded the maximum dose (the only result which you have already noted is extreme suffering from RLS that provides no additional information).

My standard of care for this situation is to prescribe a potent opioid (methadone is my drug of choice, but oxycodone or others will do) to get the patient through this very difficult period. You can certainly use me as a reference for this therapy.

I am also not a great fan of clonazepam. It has a very long half-life (30-40 hours) and tends to cause next day drowsiness. It is a benzodiazepine and has a significant risk of tolerance/dependence. If you are using this drug mainly as a sleep aid, then there are much better (and newer) non-benzodiazepine drugs (Ambien, Lunesta). Clonazepam may be a reasonable choice to treat chronic anxiety problems (that do not respond to other drugs such as the SSRI's, Wellbutrin, etc.).

Sent: Friday, May 19, 2006 12:37 PM
Subject: PLMD

My story is a bit strange, and was hopeful that you could give some insight. I'm a 31-year old female. About a couple of months ago, I was deeply asleep and started to twitch/shake pretty badly. It kept my boyfriend awake most of the night because I would shake the bed. For the first month or so, this would happen maybe 1-2 times a week, with that severity. About a month later, it moved to being a nightly occurrence, but less "severe," meaning I still twitch and shake, but I rarely shake the whole bed.

After that, I made an appointment with a Sleep Disorder Center. I've always been a snorer, so was hoping to find out if I had sleep apnea, too. They put me in for an overnight study, where I was supposed to have extra electrodes on. That didn't happen, and I was given an Ambien. When I went to get my results the next week, my study came out in the normal range. I never stopped breathing and my O2 levels were fine, so I don't have sleep apnea which was good. However, I only had 3-4 PLM's per hour, which is normal. I was wondering if that could be due to the Ambien that was given? Now, I know Ambien has a short half-life, but it really messed with me, I slept fine that night, but the next day I was so tired, I could've fallen asleep at work.

So, the doctor set me up to have a sleep-wake EEG, and to get some blood work done. The crazy thing is, for about two weeks after the sleep study, my twitching at night became much better (not necessarily gone, but less frequent). Then, it started returning back to the way it was before the sleep study. Then, I did the EEG and blood work. Went to the appointment the week after to get those results. Blood work came out perfect, but there were some "artifacts" noticed in the EEG. The doctor explained these weren't the classical epilepsy spikes, so I probably don't have epilepsy.

Since I am still having problems at night, she thinks I may have PLMD, and decided to give me clonazepam, and see if that helps. In the meantime, she is going to have the "expert doctor" look at my studies with a fine-tooth comb, and I'll be meeting with him in a couple weeks. So, does my condition sound like PLMD? Is it normal to have twitching that comes in sequences sometimes - my shoulder will twitch, then around my elbow, then my hand, then start back at the shoulder again and loop? The two nights I've taken clonazepam, my twitching at night has been much better.

If my doctors feel I should stay on medication, should I ask them for a different medication? Looking at your site, I notice that there are other meds that you prefer. However, I've never had luck with sleeping pills, like the Ambien. Yet, I've never had any problems with narcotic type drugs like Percocet (had that after a C-section, and functioned rather well). Should I stick with the benzodiazepines (so far I've been fine with the clonazepam, but it has only been 2 days)? Should I ask about trying something less habit forming like Mirapex or Requip?

Chris

A Medical Reply

Your story is somewhat puzzling. Without viewing or getting a direct description of your twitching, it is hard to comment on whether they are PLM's or not. Although PLM can vary from night to night, they should not be so different such that you have less than 5 per hour (which is considered normal) on the night of your sleep study. Ambien does not affect sleep apnea nor does it decrease PLM. Both the benzodiazepines and Ambien may decrease arousals from the PLM but not the actual number of PLM.

As you may have read on the website, I am not a big fan of clonazepam (too long a half-life and tolerance/dependence problems). I am not sure what your doctors are treating so I would be reluctant to recommend any drug treatment at this time. Perhaps a repeat sleep study (without a sleeping pill, unless you really can't get to sleep) may be helpful.

Sent: Sunday, May 21, 2006 1:49 AM
Subject: PLMD or hypnic jerks?

A doctor recently confirmed that I have PLMD without even conducting a sleep study on me though she had performed an EEG on me after I described to her my sleep problems. I stayed overnight in a hospital and she discharged me immediately the next day w/o giving me any advice and medicine which I found annoying. I'm living in Singapore where the knowledge of PLMD seems to be minimal. My PLMD is confusing in the sense that on some nights it affects me and on other nights it does not.

However, whenever I try to take a nap in the afternoon, I have never been able to fall asleep due to the jerking of my limbs, most notably the arms. Something I found interesting in my PLMD is that it seems to be connected to my dream images just before I fall asleep. For example, when just before I'm asleep when I'm "dreaming" of eating, my jaws will actually "bite"! Then I'm aroused.  And also my limbs will jerk when I'm sensing I'm falling asleep. Just one more step to sleeping when PLMD kicks in..

Is this typical of PLMD? Or is it other problems like hypnic jerks? Since that annoying trip to the hospital, I have seen my family doctor who prescribed me Nitrazepam which helps my PLMD by allowing me to fall asleep even in the day. Problem is, it seems to have a long half life and when I take it in the night, I still feel sleepy in the day..

Can nitrazepam be used in the long term? Will it lose effectiveness over time? I'm still very young and might need to take it for the rest of my life... And just another question, are the experts close to finding the cure to PLMD/RLS?  Cause I know how PLMD/RLS tortures sufferers and is fervently hoping a cure is found soon.. Sorry for the long message, just felt that my case needs some detail descriptions.

Tony O.

A Medical Reply

The limb jerks that you are experiencing when falling asleep are classical hypnic jerks. PLM leg jerks (by definition) come in volleys of at least 4 or more movements. There does not seem to be any proof that you do have PLMD (which is a very controversial diagnosis even when the correct studies are preformed). You need a real sleep study in order to determine whether PLMS/PLMD should even be considered.

Nitrazepam (not available here in the USA) is a benzodiazepine with a very long half-life (20-40 hours) which clearly gives it a very high potential to cause daytime sleepiness. Like all benzodiazepines, it does have a significant risk for dependence/tolerance with time. The non-benzodiazepines are much safer for long term use.

A Reply from Tony O.

Sent: Tuesday, May 23, 2006 10:16 AM
Subject: Hypnic Jerks Question.

I am just wondering if hypnic jerks can occur in a long term basis as my sleeping problem (the jerking of my limbs) has been bothering me for the past two months already and if so, what really causes hypnic jerks? Also my jerks seem to bother me more when I try to take a nap in the afternoons(8 out of 10 times I fail to fall asleep in the afternoons), while at night my chance of falling asleep without feeling the jerks seems to be more optimal, maybe 8 out of 10 nights. Yesterday happened to be one of those troublesome nights when I have to rely on nitrazepam, which I have only taken about 3 times since it was prescribed to me, to sleep.

Also, my problem seems to have started when I started a workout regime at home, which includes intensive exercises like pushups for two hours, then a break, then another two hours. Could it be that my jerks are caused by the exercises? Sleeping has been so tedious to me that I dread lying in bed every night.. Its like a phobia!

Tony O.

A Medical Reply

The cause of hypnic jerks is unknown. In general, they are not usually associated with increased prior exercise, but in your case there seems to be a relationship (although, I doubt we can come up with an explanation). Most everyone experiences these hypnic jerks (on a rare basis) but some people (such as you) get these on a very regular (and annoying) basis.

You should try (with the help of a good sleep doctor) to resolve this problem or else you will be left with a very hard to treat chronic insomnia condition.

A Reply from Tony O.

Sent: Saturday, June 10, 2006 9:08 PM
Subject: Is Neurontin effective for PLM?

My condition seems to have gotten worse for the past few weeks. I now suspect I have PLM rather than hypnic jerks as I jerk and twitch a lot when trying to sleep and the jerking/twitching happens when I am getting drowsy and beginning to fall asleep. I am just curious on how do you differentiate PLM from hypnic jerks?

I have been doing a lot of reading up on these two disorders (though the latter can only be classified as one in extreme conditions) and find it very hard to differentiate between them. I am scheduled for an appointment with a hospital for my condition and hopefully a sleep study can be arranged. If I do have PLM (Periodic Limb Movement), what is the most effective drug which can be used for treatment in the long run?

Can gabapentin help? Also, I understand that gabapentin loses its effectiveness after 1 or 2 years and if so, what other medicines can I rely on?

Tony O.

A Medical Reply

The only way to differentiate PLM from hypnic jerks would be a sleep study. The most effective drugs are the dopamine agonists (Requip and Mirapex). Neurontin (gabapentin) is also effective for PLM but the dopamine agonists generally work better with less side effects. None of the drugs should lose their effectiveness with time.
 

Sent: Sunday, May 21, 2006 8:12 PM
Subject: RLS and sex?

I've just found your site and have read through many of the letters but didn't see any mention of RLS and sex. My symptoms are at their VERY WORST after I have climaxed. It is absolutely awful to never be able to experience any form of "afterglow". Instead, I have to get up immediately or go absolutely crazy with the most hyper, restless, coming out of my skin sensations.

Is this documented anywhere? Do you have any suggestions for this? I have not tried any drugs for my nighttime RLS and PLM but am thinking of giving in. Given these other symptoms, i.e.. increase after sex, does that make you think of what class of drugs that I should start with?

CS

A Medical Reply

There are several letters on our website that discuss climaxing (but use the word orgasm, so use our search engine on our home page and you will get over 10 pages that contain this topic). Usually having a sexual orgasm helps RLS, so your case is somewhat different. There are no recommendations for a specific medication to ward off this effect of orgasm on your RLS, but it is very likely that taking Requip or Mirapex 1-2 hours before should prevent problems.

Sent: Monday, May 22, 2006 7:52 AM
Subject: Ambien not working?

I have taken 10 mg of Ambien for a year, and it stopped working. I took a month off now the Ambien works, but I need 15mg to put me to sleep. Is the 15 mg dangerous?

Joan R.

A Medical Reply

How much is too much varies considerably amongst individuals. In Europe, the maximum dose for Ambien is 20 mg (so clearly they believe that is a safe dose, at least for Europeans).

A Reply from Joan R.

Sent: Saturday, May 27, 2006 6:44 AM
Subject: Klonopin and drug holidays?

I take 1 mg of Klonopin nightly. after 2 weeks I take 3 days off for drug holiday.  I use Elavil for 3 nights dosage 25 mg. Is this acceptable for drug holiday?

Joan R.

A Medical Reply

Drug holidays are not well understood or very scientifically based (they have not been studied enough and most of what we do is based on anecdotal experience). Real drugs holidays take people off the drug for a month or longer. Then the drug is restarted at a lower dose and becomes effective again.

Taking short, regular drug holidays from drugs as you are doing may be helpful to prevent tolerance/dependence since most drugs need to be taken on a daily basis to cause these problems. However, Klonopin is a very long acting drug and may need a week or more off the drug to accomplish this effect.

Sent: Tuesday, May 23, 2006 2:07 PM
Subject: RLS concerns about treatment with painkillers?

I was diagnosed with RLS about 5 years ago. I was using Ultram as a course of treatment and had good luck for the most part. Recently it is loosing it's effectiveness. I had oral surgery and was given Vicodin which also seemed to ease the RLS. My current physician will not renew my current Ultram Rx and refuses to prescribe anything considered a controlled substance.

I tried all of the other types of medications on the market and nothing worked until I found Ultram. Does anyone have any ideas on what else might work since my doctor will not try the course of treatment that I think will work?

Jennifer C.

A Medical Reply

If you have tried the dopamine agonists (Mirapex and Requip) and the anticonvulsants (Neurontin and others) without success, then the painkillers are next on the list to treat RLS.

You will need to convince your current doctor to prescribe the painkillers or either refer to one who will or seek another doctor on your own who will prescribe the medications that you need.

Sent: Tuesday, May 23, 2006 9:16 PM
Subject: RLS and mood swings, worried for my husband?

Do you have any useful information on the possibility that Mirapex or the RLS itself could cause increased mood swings or irritability on a seasonal basis? This is not the SAD disorder, it begins in spring. Could there be a correlation to the dopamine levels changing due to increased sunlight?

It's getting harder to deal with this while he's awake.   It's already difficult enough while we sleep.

Stacy B.

A Medical Reply

There is no information on dopamine agonists and seasonal mood swings. Dopamine agonists have been found to affect personality traits such as obsessive-compulsive behaviors, however there was no known seasonal component to this effect.

Sent: Thursday, May 25, 2006 9:49 AM
Subject: RLS symptoms while on epidural?

I have had RLS since I was 26 and am now 41. In the beginning the episodes were few and far between. With my first pregnancy at 30 my episodes became more frequent. Still I took no action. By my second pregnancy I had occurrences every night, but could not do much about it. Once I gave birth things simmered down and I lived with it. The third pregnancy was a whole different story. Constant day and night RLS.

I went into preterm labor at 25 weeks and was put on a magnesium drip. It stopped completely! At 30 weeks my doctor decided to give me a C-section because of inactivity of the baby. I was given an epidural. Naturally the magnesium drip stopped. I experienced severe RLS during the epidural. How can this be explained, if you can't feel your legs?

P.S. My daughter is now 6 and very healthy!

Joan H.

A Medical Reply

Your question brings up an interesting issue about RLS. The epidural blocks sensation from the legs. However, the urge to move and other RLS sensations may actually be generated in the brain. Remember, even though normal pain and other sensations that we normally feel in our legs are generated in the affected limb (such as with trauma to a limb), the sensations are sent to the brain to be felt as pain.

In RLS, the actual sensations may not come from the legs or spine but be generated in the brain making the RLS sufferer feel that they are coming from the legs. It is similar to a "phantom limb pain" that occurs in people who have a limb amputated but still feel pain in the limb (clearly generated by the brain).

Sent: Thursday, May 25, 2006 9:36 PM
Subject: Requip and nicotine reaction

I just found this site tonight and it has been extremely helpful to me. My mother (82 years old) has suffered with RLS for years before it was diagnosed. At any rate, the doctor put her on 2 mg of Requip at night with an additional 2 mg if needed. My mom is a light smoker (2 cigs/day). She has osteoporosis, depression, high blood pressure and is on meds for these as well, including oxycodone and mirtazapine (Remeron).

She has been hallucinating and at times has difficulty figuring out what's real vs. what she dreamt. We have recently noticed that she has more difficulty right after she smokes a cigarette. Has anyone noticed this problem while taking Requip? Also, due to the osteoporosis, she cannot exercise much. Can you recommend any leg exercises that might help with the RLS?

Thanks so much for providing this wonderful site! I am an RLS sufferer as well. I notice that my symptoms get worse if I'm over-tired.

Patti M.

A Medical Reply

Your mother's dose of Requip is somewhat high. Although it can be taken at up to 4 mg, most need less than 1 mg per dose. She might do as well with her RLS at lower doses (some need as little as .25 mg per dose) and decreasing it may take care of her RLS and have a lower chance of producing side effects (forget this advice if she started on low doses and did not get any benefit).

Hallucinations have been associated with Requip, but only at the higher doses used to treat Parkinson's disease. It is possible that her problems are due to her other medications but if it is due to Requip, then lowering the dose may be beneficial.

Mild exercise helps reduce RLS symptoms (for most sufferers) but vigorous exercise worsens it. There are no specific exercises that help RLS patient. Each patient must determine the level and type of activity that helps or hinders their symptoms.

Sent: Friday, May 26, 2006 5:47 AM
Subject: RLS in pregnancy.

Hi, please can you advise me of anything I can to do to relieve the symptoms I have of RLS that have started in my late stage of pregnancy. Are there any 'natural' remedies I can try as opposed to prescription drugs?

Carole B.

A Medical Reply

There is no evidence that any natural treatments help RLS. Most RLS specialists recommend narcotics (methadone or oxycodone) in low dose for pregnant RLS sufferers.

Sent: Sunday, May 28, 2006 3:01 PM
Subject: RLS worse on medication?

I was taking Requip .25 mg x 3 each day. About a month ago I stopped taking Requip because I had reached augmentation . Will this drug work again at a lower dose ?
I will be seeing my doctor next week. He is very willing to work with me to resolve my RLS pain. As of now I am taking 50 mg Ultram x2 and I usually have to add a low dosage of hydrocodone in the evening .

I also take 15 mg of Temazepam . What treatment plan should I try next .I am so tired all the time from pain and lack of sleep. I ask my doctor to write a prescription for Ultram so I could take drug holidays from Vicodin but it is not working that well. Should I try a low dosage of Mirapex.?

TW,
Oklahoma

A Medical Reply

It is probably better to stick to hydrocodone (Vicodin) alone and forget about using Ultram as it does not seem to work that well for you (and the benefit of short drug holidays are somewhat controversial).

Stopping Requip for a month then restarting at a lower dose will often work very well. Mirapex is more potent than Requip so it may cause augmentation problem again, but this can vary considerably (only trial and error can really answer that question).

It may be helpful to add Neurontin (gabapentin) 1-2 hours before bedtime (1-4 of the 300 mg pills) as it may help you control your RLS and often has a sedative effect. Another option would be to change to a more RLS potent narcotic such as methadone (which is also actually less habit forming) and usually provides excellent control of RLS.

Sent: Monday, May 29, 2006 7:03 PM
Subject: Blood in the urine due to Mirapex?

I've been taking Mirapex for several years (one dose .25 mg at 8 p.m., and another dose .25 mg. at bedtime). In March of 2005, I had minor knee surgery, and ended up with arthritis in my right knee. To relieve the swelling and pain, I began taking Aleve. Soon I began to see lots of blood in my urine. My doctor ordered many kidney tests, which all turned out fine.

My doctor told me never to take Aleve again nor aspirin. After a few weeks the blood disappeared from my urine. At the RLS meeting in Florida, I asked you if Mirapex could cause damage to the kidneys, and you said "no."

However, last week I took an airplane for a vacation trip, and took Mirapex several times (4 x day at .25 strength) during the day so I would keep the RLS "at bay." I had taken NO PAIN MEDICINE OF ANY KIND. In a few days, while on vacation, I had lots of blood in the urine again. I began to suspect it might be because of taking the extra Mirapex. When I got home the blood seemed gradually to disappear again.

On Saturday, I felt like I needed to take some pain medication to work in the yard, so I took two Tylenol for Arthritis. I also took a Mirapex at noon so I could lay down to rest after the strenuous yard work. That night I began to see blood in the urine again. On Sunday, the blood wasn't so apparent. Today, I took two more Tylenol for Arthritis, and a Mirapex at noon so I could do strenuous yard work and rest afterwards. Tonight, the urine is bright red with blood. Have you ever heard of this condition? What do you suggest?

Sally B.
Maine

A Medical Reply

Although hematuria (blood in the urine) is listed as a rare side effect of Mirapex, it is much more likely that you have some new problem in your urinary system (most likely in the bladder). You should probably have a consultation with a urologist who may wish to perform a cystoscopy to rule out any underlying urinary tract pathology.

If the urologist finds no pathology, then you may indeed be having blood in your urine due to Mirapex (in which case you better go off of this drug). This should then be reported to the FDA so that others may benefit from this information.

Sent: Tuesday, May 30, 2006 3:18 PM
Subject: Surgery and RLS?

I have had RLS off and on for decades (used to call it "jumpy legs" until I heard of RLS). I don't have it all that often, and don't usually have it during the daytime unless riding in a car or plane for long periods of time. So I've never really felt the need for medication. But I had a total hip replacement two weeks ago and since then have had much trouble sleeping, and even some daytime RLS.

I have been reading past letters on the your website and noticed one reply that said ...

"It is very common that some trauma to the body, such as surgery (most often back surgery or injury) is the trigger for starting or worsening RLS."

My question is this: If this sudden increase in RLS is due in part to my surgery, will it subside back to "normal" levels as I recuperate from surgery, or is it more likely to stay at this level indefinitely.

Thanks for your help and reply.

Marcy,
Texas

A Medical Reply

It is most likely due to surgery although we have no idea why this occurs. It may or may not get better with time. From my informal observation of this phenomenon, I would guess (and this is a real guess as there is no data at all to support this guess) is that half improve with time and the other half stays at the worsened level indefinitely.

Sent: Tuesday, May 30, 2006 8:11 AM
Subject: RLS better with Natural Calm

When I got married 5 years ago, my husband was like wow! Do you run a marathon at night. He finally gave up and slept in the other room until I found a way to abate this pesky thing once and for all.

I would have to shake my legs, get up and walk and always felt like they were in control not me. Night time was the worst. It would wake me out of a sound sleep. I came across a product called Natural Calm. I also take MSM. I take the Natural Calm in the morning and a half hour before bedtime. You boil some water and start with a heaping teaspoon of the natural calm. You can go up to three teaspoons, I never did. Anyway, you put the spoonful in a cup and add 1/4 cup of hot water. You can drink it straight or use your favorite juice. I like mine with apple juice or white grape juice.

It stopped my RLS - only on occasion will it flare up - but I have not been bothered by it in almost a year now. I swear by this product, which can be bought in any good health food store, or it can order it online. It is not just good for RLS it is useful in a variety of things. My son talks a mile a minute, and hard to understand. I gave it to him three years ago, and it slows his speech down to the point where he was like Oh My God I can't believe this. It provides a good source of Magnesium that we all need in our bodies.

I am not opposed to conventional medicine, but I prefer not to use them unless I have no other choice. I have learned over the course of time that there are many good safe things provided to us by nature, and unless I have an 'absolute' need to use medicine, I opt for natural ways. I will give an example ... Last year, my son had this good size plantar's wart that just got bigger and bigger to the point he could barely walk. He would always laugh at me about my natural ways. He had the wart surgically removed and it came back with a vengeance. The cost of a five minute procedure was astounding - so I made him come with me to the Health food store and show his foot to the people there. I was armed with Oil of Oregano drops and Oil or Garlic Drops and also Oil of Oregano capsules, by the time we left the store.

Call me stubborn, I just do what works best for me, and always with the blessing of my doctors. There is so much to learn, so I spend a great deal of time reading - I always print out and bring what I find to my doctor. Just thought I would share. Have a great day today, and a better day tomorrow!

Janet

A Medical Reply

Here is a reply from to a very similar letter from October 11, 2005, Page 63:

"There is no evidence that any natural remedies help RLS. Although many patients (such as yourself) do seem to benefit from some of these unproven natural cures, most other RLS sufferers cannot reproduce this effect.

Please note the following from the Night-time Leg Calm website: Due to FDA guidelines, RESTLESS LEG RELIEF is now Night-time Leg Calm. NIGHT-TIME LEG CALM Wellness Oil is a special blend of pure essential oils designed specifically for NATURAL relief of RLS. It seems that even the FDA has concerns about this product's false advertising. The big problem is that these products may be preying on RLS sufferers in order to make money.?

There is a very strong placebo (sugar pill) effect from any remedy for RLS. This often explains the response to many of these natural therapies. However, only a very few people seem to get any benefit from these remedies which is why we do not recommend them.

There are over 500 known treatments (most of them of the natural type) for warts. Many of them work as well or better than surgery.

Sent: Tuesday, May 30, 2006 7:11 PM
Subject: Requip or Neurontin for RLS?

How soon will Requip work? Do you think Requip is better than Neurontin? Is Requip an expensive pill? Does the new prescription plan from Blue Cross list it in coverage?

Noreen K.

A Medical Reply

Requip may work within the first night, if the dose (.25 mg) is the lowest dose is effective. For most RLS sufferers, Requip works much better than Neurontin with fewer significant side effects. However that can vary considerably for any given person.

Requip (and its cousin, Mirapex) are both reasonably expensive pills but they are covered by most of the prescription plans. Blue Cross (and all other insurers) drug coverage varies from state to state and have many different plans (at varying costs) in each state that also have different drug coverage. You therefore must ask your local Blue Cross plan to determine the coverage, co-payment, etc.

Sent: Thursday, June 01, 2006 7:02 PM
Subject: Vicodin for RLS?

I am a 53-year-old woman with RLS that started just over a year ago when I began peritoneal dialysis. I had some vicodin left over from a kidney infection and tried it. It worked great, so I asked my nephrologist for a prescription, but he said he'd rather give me something else, like Neurontin, Klonopin or Sinemet. From reading the RLS site, I figured he didn't know too much about RLS (even though it occurs in about 1/3 of dialysis patients). He wasn't familiar with Requip, but was willing to have me try it. I did, for about a week, with no results, but a very upset stomach. He refused to give me Vicodin, but said it was okay for my primary to prescribe it.

My then primary was agreeable, but I had to change primaries because that one would make appointments and typically show up two and a half hours later. I have a new primary who will not continue to prescribe without a neurological consult. There are only 3 neurologists in the physician group of my Medicare HMO. I dread going through the process with someone who is not current on RLS.

I am not prone to addiction, only take a single 7.5 mg tablet a night, and with this can sleep well with no symptoms and still wake up during the night to do my manual dialysis exchanges (every 3 hours). This has been a godsend to me--simple, convenient, and cheap with no side effects. With no RLS, it's the difference between heaven and hell.

Should I see an outside my system specialist and pay out of pocket, in hopes that my primary would then continue writing prescriptions for me or should I take my chances with one of the neurologists he refers me to? Could you suggest any literature that I could provide a specialist about the utility of vicodin for RLS and that a lot of people can take it without getting hooked?

Christine K.

A Medical Reply

Vicodin and other opioid (narcotics) painkillers work very well for RLS. They are very safe when used in low dose (such as you are doing) and taken only once or twice per day. Most physicians are not that comfortable with narcotics and do not like to prescribe them on a long term basis (as you have already discovered).

There are several articles detailing the use of opioids (not hydrocodone or Vicodin in particular) for RLS. Here are a few that you can show to your doctors.

Ondo WG. Methadone for refractory restless legs syndrome.
Mov Disord. 2005 Mar;20(3):345-8.
PMID: 15580610 [PubMed - indexed for MEDLINE]

Wetter TC, Winkelmann J, Eisensehr I. Current treatment options for restless legs syndrome.
Expert Opin Pharmacother. 2003 Oct;4(10):1727-38. Review.
PMID: 14521483 [PubMed - indexed for MEDLINE]

Walters AS, Winkelmann J, Trenkwalder C, Fry JM, Kataria V, Wagner M, Sharma R, Hening W, Li L.
Long-term follow-up on restless legs syndrome patients treated with opioids.
Mov Disord. 2001 Nov;16(6):1105-9.
PMID: 11748742 [PubMed - indexed for MEDLINE]

You should not have to see a specialist out of your system and pay out of pocket (unless your HMO doctors and specialists are particularly poor and you want to save time and energy navigating it). However, it may take some time and effort to navigate your HMO system and get the proper medication, but sooner or later most well educated RLS patients can get the medication that they need.

Sent: Friday, June 02, 2006 4:57 PM
Subject: RLS and insomnia?

For a number of years, I had been taking clonazepam to relieve RLS. Read some medical info and discussed with my GP that I should go on Mirapex (.25 mg). It worked for six months but I developed insomnia and anxiety. I abandoned Mirapex and I am back on clonazepam (2x 1mg). Results are that I can sleep, waking up often but suffer from extensive RLS. Should I reduce clonazepam to 1x 1mg and accompany with 1x.25 mg Mirapex ?

The situation is so bad at times that I cannot endure the pain even if I walk, jog, squat or massage my legs.

Has anyone determined why RLS occurs at night and not during the day?

Thank you

Denis B.
GATINEAU, Quebec,
CANADA

A Medical Reply

I am not a big fan of Klonopin (clonazepam). It usually has no effect on RLS symptoms bur rather helps RLS patients fall asleep. However, there are better sleeping than Klonopin.

If Mirapex started causing problems, it may still be worth trying Requip. If that does not work out, then the painkillers or Neurontin (or other anticonvulsant medications) should control your RLS and let you sleep and be active.

We do not fully understand why RLS symptoms are worse at night but dopamine levels drop during the night and we think that dopamine is involved in RLS (which may be why the dopamine drugs Requip and Mirapex help RLS).

Sent: Sunday, June 04, 2006 11:35 AM
Subject: Mirapex and high blood pressure (hypertension)?

I have recently have been diagnosed with Hypertension. I have had 2-3 Cat Scans a urine blood test and every other test completed that could reveal the cause. Thus far, no cause can be found. I am wondering if Mirapex could be the culprit. I have RLS and take 2 mg of Mirapex in the evening.

Even though I am taking a blood pressure medication I am still having some problems with a blood pressure that is to high with some of the readings. What do you think?

Linda

A Medical Reply

If anything, Mirapex and other dopamine agonists have been associated with low blood pressure. Therefore, it is very unlikely that the Mirapex is contributing to your high blood pressure problem.

Sent: Monday, June 05, 2006 12:42 PM
Subject: Mirapex and zolpidem (Ambien)?

I have been taking 10 mg zolpidem nightly to try to control my severe PLMS but it is not enough to prevent daytime fatigue and buckling knees. I am considering taking a bigger dose than 5 mg and/or taking Mirapex which usually results in me waking fully at 4am and being unable to sleep after. When taking Mirapex previously it also gave me a persistent headache and I ceased it after a week, maybe not long enough to see if the headache settled.

My idea is to take Mirapex at bedtime and then Zolpidem at 4 am if I cannot sleep. I get up at 7.30 and drive my car by 8am. What do you think? Your advice would be much appreciated as my doctor is at a loss and happy for me to inform him on best treatments from my own research. My neurologist saw me once and has never bothered to call me for review so I am pretty well on my own with this.

David M.

A Medical Reply

You may want to consider changing to Requip and seeing if that drug works better for you than Mirapex. Another alternative would be Neurontin.

If the Ambien (zolpidem) does not work when taken at bedtime you may have other problems when taking it at 4 am. It is meant to be taken 7-6 hours before wake time so you may end up sleepy during the morning. A better choice for middle of the night insomnia would be Sonata (10-20 mg) as its half-life of 1 hour is very short (compared to the 2.5 hours for Ambien).

Sent: Jun 6, 2006 6:06 AM
Subject: Problems with Requip and Mirapex and anxiety and depression?

I have moved to another state and just started seeing a new doctor and I am feeling conflicted. I am 43 years old with RLS, sleep apnea, and GAD. For the apnea I have a CPAP, for GAD and depression I am taking 450mg of Wellbutrin XL and just changed from Clonazepam 1 to 2 mg to Mirapex which made me very sick to my stomach (plus I could not sleep well). Then I was put on Requip (which also affected my sleep in a negative way) for RLS and developed the worst anxiety attach I have ever experienced - actually thought for a bit I WAS having a heart attack.

Last night I did not take the Requip and got back on Clonazepam with the help of Xanax 2 mg. I haven't slept well for the past few weeks when I was not on Clonazepam. I know Requip does something to the dopamine levels - can it conflict with the Wellbutrin I am taking for anxiety and depression?

I accidentally stumbles onto this website and was thankful to read what others are doing and would greatly appreciate your input.

Scott

A Medical Reply

It sounds as if the dopamine agonists are not for you. Although sleepiness is the more common side effect with these drugs, some patients do experience insomnia such as you have described.

Wellbutrin is an RLS friendly antidepressant that actually has some dopamine activity and should not conflict with Requip or Mirapex. Your RLS may benefit from an anti-seizure drug (like Neurontin) or from a painkiller.

Clonazepam and Xanax (benzodiazepines) may worsen sleep apnea (you may need a higher CPAP pressure when on these drugs) so the non-benzodiazepine drugs (like Ambien and Lunesta may be a better choice).

Sent: Jun 7, 2006 7:02 AM
Subject: RLS with legs feeling wavy?

I am a 48 year old female. I have not been diagnosed with RLS by a professional, but have recently been doing some research on it. At night my legs will feel "wavy", like the lower half of my body is riding a wave. I do not have the pain or creepy feelings in my legs. If I change positions the feeling will sometimes get better. If I get up during the night and return to bed the feelings start up again. Can this be RLS?

Also, I have started a walking program and after completing the walk, my legs have twitching sensations that last for about 15 minutes. It sort of feels like the nerve ending are all firing off at the same time.

Kasey T.

A Medical Reply

It is difficult to decide from your description whether you have RLS. You must have discomfort in your legs (which may be the wavy feeling) which occurs at rest but this feeling MUST be accompanied by an almost irresistible urge to move your legs. If you do not have this urge to move your legs then you do not have RLS.

In addition, the urge to move and the abnormal sensations should be relieved with movement and then resume with rest.

Sent: Wednesday, June 07, 2006 11:28 AM
Subject: RLS, Reflux and Requip?

I am a 47 year old female who has suffered from reflux most of my life. In 1993 was diagnosed with Barrette's esophagus and began taking Prevacid regularly since. About 15 months ago my dosage was doubled to 30 mg twice daily, due to burning in my throat and occasional nighttime reflux. But over the last six months or so I noticed that I would have no burning, nausea or other symptoms until I'd take my second daily pill. So I began to wonder if the extra dosage might be causing more problems than helping?

Then about three weeks ago my doctor prescribed Requip for restless leg syndrome. The initial beginning dose was 0.5 mg before bedtime to be increased to 1. mg at bedtime, after four days. However, I had done so well with the initial dose, I haven't increased it.

The reason I am writing is that I'd like to know if there has been any research done about Requip helping with reflux or other gustro medical conditions? I haven't done a lot of research on RLS but I'm beginning to have some hypothetical thoughts about a possible connection between my gut problem and RLS? The reason is that since I have started taking Requip, my gut problems feel like they are gone.

I reduced my dose of Prevacid to 30 mg daily with absolutely NO burning or other symptoms. I didn't know think it would be wise to try to lower any further too soon, so I waited a couple of weeks and skipped a day of taking Prevacid. Again there were no side effects of any kind. I would like to continue slowly tapering down on Prevacid just to see if Requip may be able to handle my reflux in place of Prevacid?

I have a follow-up appointment with my physician next month and I will certainly share my findings and follow his advise about all of this. For now, I just wanted to see if there was anyone else who may have reported similar experiences about Requip, or if others with RLS might also suffer from what I call 'fidgety gut' (reflux) problems?

Thanks for listening and allowing me to inquire.

Jen

A Medical Reply

There is no known link (positive or negative) between reflux and Requip. It is more likely that the regular use of Prevacid had healed your stomach and esophagus sufficiently that it can now do well even with extra acid.

Requip should be started at .25 mg and there is a reasonable chance that if you take 1/2 your current dose that you may do well (and it is always better to take less medication if it works).

Sent: Wednesday, June 07, 2006 11:23 PM
Subject: RLS better with vitamins?

I just wanted to thank Raging in Canada about her suggestion for using Calcium, mag, zinc and vitamin D to help with restless leg syndrome. Since I was diagnosed with RLS my first physician put me on Mirapex and as they increased the dosage (because eventually your body becomes immune to it) I developed a Severe Gambling Addiction (so if you are taking Mirapex go to http://www.rkmc.com/Mirapex_and_its_Link_With_Compulsive_Gambling_Disorders.htm ).

Anyways didn't me to get so far off the subject, my physician then changed my medication to Requip, it worked but not as good a Mirapex and not all the time. Well about a month ago our health insurance ran out and I began to panic that I could not afford my medication, if there was one thing I could not live with, it was RLS it seemed the more medication I took for it the worse RLS got when the medication did not work, so I began searching for a miracle. I found this web site and decided to try Calcium, mag, zinc and vitamin D and since my first dose I have not had any RLS syndromes.

Cheryl,
Placerville, California

A Medical Reply

Although some do need to keep increasing their doses of Mirapex or Requip (and of course those are usually the ones who write into sites like this one), most stay on stable doses for many years.

Most RLS sufferers do not benefit from minerals or vitamins (except from iron, when appropriate) but clearly some (such as yourself) do benefit.

Sent: Friday, June 09, 2006 11:46 PM
Subject: RLS worse due to narcotics?

For years I have had some degree of RLS symptoms, but not bad enough to lose too much sleep over. I had a lower back fusion done in 2004 and again in 2005. Because of the pain with the disc problem, I had been on Lortab since probably 2002. During that time I had very little RLS symptoms. Now that I have fought through all the withdrawal issues and am no longer taking the narcotics (2 months clean!), I find I am only getting 2 -3 hours of sleep a night because the RLS is so bad. Ambien doesn't help.

It's amazing how the RLS is similar to some of the "creepy-crawlies" associated with Lortab withdrawal. I'm curious on the effects of the long term Lortab use (7.5/500, sometimes as many as 8 a day, or the Hydromorphone we switched to when Lortab was maxed out) and its relationship to RLS. The connection seems obvious but I don't like the thought of going back on narcotics to stop the RLS.

I guess the questions are: Is this just an extended side effect of the withdrawal that will hopefully go away? Is this a permanent result of extended narcotic use? or, maybe I've had RLS all along and the narcotics were simply masking the symptoms. Do you know of a site or study that might help with these questions?

Michael J.

A Medical Reply

It sounds as if you had RLS all along and most (if not all) of your "withdrawal symptoms" may have been due to untreated RLS. There is probably no site that deals more with this particular issue than our website (read the letters). It is extremely unlikely (and in fact, I have never heard of it before) for narcotic use to worsen RLS worsen RLS.

Your RLS should respond nicely to many other non-addictive classes of medications such as the drugs choice, the dopamine agonists (Requip or Mirapex) or the anticonvulsants. You have an excellent chance of being RLS symptoms free and therefore not needing any narcotics.

Sent: Saturday, June 10, 2006 5:11 PM
Subject: Sodium and RLS?

I have had RLS since I was 35. I am 46 now. It has increased in frequency and intensity as I have gotten older. I wanted to reply to a post about Marie Goodwin's book of reducing salt intake. I can absolutely say that for me when I stay awake from salt/ and products high in sodium my RLS is drastically reduced. I am on Requip right now but I am having some side effects mentioned in other posts, that and I think my estrogen therapy has lost it's effectiveness since being on the Requip, although the Requip does work well as far as controlling the RLS. I am thinking of talking to my doctor about Mirapex. Anyway I just wanted to let folks know that for me if I stay away from salt/sodium as much as possible it does help me.
Thanks for this wonderful website,

Debbie
AKA The Linux Princess

A Medical Reply

A few RLS sufferers do seem to benefit from salt/sodium reduction in their diets but so far, the majority do not benefit from this treatment.

Often when one dopamine agonist (such as Requip) does not work, another one may (Mirapex) so it is definitely worth tying. Requip does not affect estrogen in any way.

Sent: Tuesday, June 13, 2006 1:04 PM
Subject: Sensations in my arms?

I don't have the problems in my legs, but I do have problems with my arms. It's only at night when I am trying to sleep. These "twitchy" sensations keep me awake. They started when I was pregnant with my daughter and have increasingly gotten worse. (It has now been 7 years!) and my dr. has never been able to tell me what is wrong.

I read an article about a woman who had RLS and she even described the problems in her arms. It sounded like mine! I was quite relieved to hear that there was someone else out there who KNEW what I was talking about.

Could this be a variation of RLS since it is in my arm (just my right arm)? I have not slept a full night since this started 7 years ago. It helps to move my arm but sometimes it bothers me so much I am just up and moving my arm for quite a while and there goes my resting and/or sleeping for the night.

Thanks for any info you can share with me!
Lori

A Medical Reply

RLS usually starts in the legs then later (as the disease progresses) often moves to the arms (or other body parts). However, some RLS sufferers may only experience their symptoms in their arms. It does sound as if you have RLS (as you fulfill all the 4 diagnostic criteria).

You can easily solve your problem and relieve your RLS symptoms by having your doctor prescribe Requip or Mirapex one hour or so before bedtime (see our website for more information on how these drugs are taken for RLS).

Sent: Wednesday, June 14, 2006 5:18 PM
Subject: Two questions about opioid withdrawal and RLS?

I'm interested to read in the letter of June 9, 2006 that the feeling of opioid withdrawal symptoms in the patient's legs and the feeling of RLS are virtually the same (which I've suspected all along). Can you comment why this is, please?

Also, I've read that many sufferers of severe RLS simply don't respond to the dopamine agonists or anticonvulsants and that, in those severe cases, opioids are the only option. Should RLS sufferers for whom opioids are the only option (having tried everything else to no avail) simply accept the fact that they are going to be taking opioids for a life-time and stop feeling guilty about it?

Mac

A Medical Reply

Opioid withdrawal is actually quite different from RLS. In that case, the return of RLS symptoms were mistaken for opioid withdrawal.

Low doses of opioids are very safe and effective for severe RLS. Patients who do not improve with dopamine agonists or anticonvulsants should clearly have to guilt or concerns (as long as they are being monitored and taking the drugs correctly) about taking long term opioids for their RLS.

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