Patient letters on RLS symptoms and remedies- Page 80

If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.

Sent: Thursday, February 14, 2008 11:44 AM
Subject: RLS Medical Alert Card

I can download the RLS Medical Alert Card but I can't write on it without a password because it is protected from editing. When I select "Stop Protection" it ask for a password.

Thomas H.

Medical Reply

We have kept the Medical Alert card write protected so that it can't be altered and thus lead to incorrect information that could adversely affect an RLS patient. We have tried to unlock the right side of the card so that patients could type in their medications but have not been able how to unlock just one side so far (we had someone who was going to help us do that but never got it done).

Sent: Thursday, February 14, 2008 8:09 AM
Subject: How much is too much vicodin?

I have suffered with RLS since I was a teen and am now 40 and experiencing RLS at night at least 4 nights a week. My doctor has treated me over the last year with 5mg vicodin at night, since I was pregnant (I am now breastfeeding.) Over the last month, I have needed to take more than one tablet of vicodin to relieve the symptoms at night and on occasion have needed to take a tablet during the day to help relieve the occasional daytime RLS symptoms.

How much is too much vicodin and when do you become "addicted" to the medication? How much longer can I continue this line of treatment. I like using the vicodin as I do not have any daytime sleepiness as a result. Is there anything else I can take that has been clinically tested in regards to breast feeding?

Karen

Medical Reply

Vicodin should not be used for pregnancy (category D) or during breastfeeding (it enters the breast milk). For pregnancy, low dose methadone or oxycodone are amongst the safest (and most effective) for RLS.

For breastfeeding, low dose methadone is the safest drug.

Although this may vary somewhat, Vicodin 5 mg can be used at 2-4 daily without concerns of dependence or tolerance (addiction is a different issue).

Sent: Saturday, February 23, 2008 6:47 AM
Subject: RLS treatment

I have been taking Klonopin for about for several years it never really took all the symptoms away but as I told my doctor if I had to spend the rest of my life like I was I would sooner be dead, it has helped me to get some sleep but I also have had to increase my dosage and now it's getting worse I am now having problems during the day I'm afraid to take a higher dosage I take 1 mg now I cannot take long drives they tried me on Sinemet and it only made the problem worse my whole body went into spasms.

I've tried doing without coffee and chocolate and of course I try to exercise. I also take other Meds. for my heart and for arthritis also I take Zoloft I worry some of them may be interacting but I need my heart medications.

P.S.

Medical Reply

Klonopin does not really treat RLS but does help RLS patients fall asleep (as you already realize). This drug can cause tolerance (which is what you may be experiencing with your need for a higher dose to get the same effect) and dependence so should be used very carefully.

Zoloft can also worsen RLS. An alternative (if it works for your depression) is Wellbutrin which does not worsen RLS.

Sinemet is no longer recommended for daily RLS but Requip and Mirapex are now the drugs of choice and the only two FDA approved drugs for this disorder. Speak to your doctor about going on one of these newer more effective RLS drugs.

Sent: Saturday, February 23, 2008 9:15 AM
Subject: Shingles and RLS?

I wonder if you could tell me if my RLS is a result of having recurrent shingles (for 8years).I had discomfort as a child but the worst started after the age of 60ty with the onset of shingles.

Neurontin did not help. Lyrica (very expensive!) helps about 75%, but my dosage had to be increased again. Is it important that I take the higher dosage every day? Will I come to a point that this medication will not help?

Helen

Medical Reply

There is no known link between shingles and RLS. However, any painful condition may trigger or worsen RLS. It is unlikely that the shingles itself caused your RLS.

Every person with RLS has different medication needs so it is difficult to comment on how much Lyrica you may need. It may be helpful to add Requip or Mirapex to relieve your RLS symptoms. Although RLS symptoms tend to worsen with time (usually over decades), most RLS patients can find appropriate medications to take care of their symptoms.

Sent: Saturday, February 23, 2008 3:07 PM
Subject: RLS and surgery?

I am scheduled for surgery next week. My RLS has been under control for a few years, but I will get it if I take something that triggers it. And lately, I've been experiencing RLS in the early morning hours, a few hours before I am ready to get up, which concerns me because I am having surgery in the morning. (I used to only get it at night until about 4:00 a.m. and then sleep fine in the early morning hours) I thought that RLS was on a circadian rhythm?

I don't currently take any meds except occasional Klonopin for PLMD, but it doesn't help the RLS. Should I try to get prescription for Mirapex and take it right after surgery? Or hope that the opioids they give me will keep RLS from stirring up?

Diana

Medical Reply

Typically, the opioids given post-operatively will control RLS symptoms very nicely. The problem occurs after the opioids are stopped and the patient's mobility is still comprised (such after leg or back surgery). If you have not been on Mirapex before surgery it should not be prescribed after surgery.

RLS does follow the circadian rhythm with most patients having problems only in the evening. However, after the condition worsens, symptoms may occur earlier in the day (especially if you are sedentary for prolonged periods).

Sent: Monday, February 25, 2008 8:41 AM
Subject: Help with RLS

I'm a 52 year old woman with RLS. I have suffered with it for a little over 3 yrs now. I am taking 4mg of Requip at night around 7:30 pm. Sometimes it gets me through the night but not always. Here is the real kicker it is 24 7. I am about to go out of my mind. I can't rest at all, going to dinner, movie etc. Just not able to enjoy life.

Help me I'm desperate!!!
Claudia in California

Medical Reply

Although Requip is only FDA approved for once daily use in the evening, most RLS specialists prescribe this drug up to three times daily for patients with RLS symptoms that start earlier in the day. Speak to your doctor about increasing the Requip to three times daily. An alternative would be to add another class of drug (especially as you are already on a high dose of Requip) such as Neurontin or Lyrica.

Sent: Monday, February 25, 2008 11:55 AM
Subject: RLS relief with soap?

I have been suffering from RLS for 17 years now. Now I know it was a genetic gift from my grandmother.. I tried to participate in studies with a local neurologist but since I have symptoms only at night and only 2 to 3 nights a week.. They said that I was not symptomatic enough to participate.

I read online about putting a bar of soap in bed with me at night could help the problem. I thought it was a crazy thing to do but tried it anyway. It has been 3 months now and I have not had any RLS symptoms at night. Of course, this does not help me if I'm sitting in the living room reading a book or watching a movie but my sleeplessness, restless legs are happy in bed with my thankful husband. I'm sure glad I gave this crazy remedy a try.

I mentioned it to my uncle who is also a sufferer. He tried it as well and to his and his wife's delight, it has worked for his bad symptoms in bed. Two weeks symptom free at this point. I just think it's worth trying before drugs. I really worked for us.

Debbie who is amazed in Plainfield, NH

Medical Reply

We have received many letters touting the benefits of the bar of soap. However, this treatment works through the placebo effect (sugar pill effect) and usually does not last more than a few months. In the drug studies on RLS about 1/2 of the patients respond really well to the placebo pill (often for many months).

Since placebo treatments are harmless (unless you have trouble with the smell of the soap (which is likely reinforcing the placebo effect), continuing with it (as long as it works) is a great idea.

Sent: Monday, February 25, 2008 8:51 PM
Subject: My neurology visit today

I have had RLS/PLMD for about 14 years. My first doctor started me on .5 mg of Klonopin. About 3 years ago that stopped working and my then neurologist prescribed .25 Mirapex. After about a year I started having RLS episodes earlier each day and had to take my dose earlier than bedtime. My then neurologist upped my dosage to .5 mg which I have been on about a year.

Due to another issue (herniated discs in neck) I was unhappy with my neurologist as he took a laid back we'll see attitude. My symptoms were severe and he did nothing but wait and see. I changed neurologists to my current doctor and began physical therapy and a medicine regimen which has brought my neck to about 90% now.

Recently, about 2 months now, I started having RLS breakthroughs during the day. My neurologist told me to take up to 1 mg of Mirapex when needed. I did this until I found the www.rls.org web site and read about augmentation and other issues with upping my dosage.

I now fall asleep often during the day due to sleep deprivation. I cannot sleep and when I do I rarely go into a deep restorative sleep. My RLS is out of control right now.

I had a doctor visit today to discuss my RLS issues. My neurologist had a deer in the headlights look when I mentioned that I think I may be augmenting on Mirapex. His answer was to up the dosage if I wanted it. He also told me that since I have two herniated discs in my lower back that he believe this is causing my RLS. He made the statement, "Most RLS is caused directly by problems in the back". I saw red flags when he said this.

When I asked him what we could do to help my sleep deprivation and breakthroughs he said he would order physical therapy for my back to relieve the RLS. The thing is that I told him I don't know of any back problems in about 3 years since I had PT for it when diagnosed with the herniated discs. He said that my sleep deprivation would only be helped by the PT and time. No offers for anything to help me sleep.

What would you suggest I do to find some help with my breakthroughs and lack of sleep? Also, I do plan on finding an RLS friendly doctor in Houston. I hate to keep switching doctors, but I need someone to treat me for my symptoms, etc.

Cyndi M.

Medical Reply

I agree that you do need to find a doctor who really knows RLS as your current doctor does not seem to understand the disease and how to treat it.

You are describing classic augmentation and need to get off Mirapex. However, stopping Mirapex will send your RLS into hyper-drive for a few weeks. Therefore, you will need a potent opioid to treat your symptoms. As far as maintenance treatment for your RLS, painkillers (opioids or tramadol) or anticonvulsants (Neurontin, Lyrica, etc.) are the best choices.

Sleeping pills (Ambien, Lunesta) are very helpful for RLS patients with insomnia. Ask your doctor to prescribe one of these medications.

Although back pain/herniated disc problems may sometimes trigger or worsen RLS, it does not cause RLS.

Sent: Monday, February 25, 2008 11:24 PM
Subject: Ultram as RLS treatment?

I suffer from nightly RLS for about 2 years now. I am on Requip 1 mg, having started at .25. It makes me feel horrible. weak, nauseated, just bad. Recently I was prescribed Ultram for a muscular pain condition and to my surprise it seemed the RLS symptoms improved immensely.. I have even been able to cut back on the Requip. I am afraid not to take it at all but since taking Ultram I have not had the "jimmy legs" sensation at all.

I asked my PCP about Ultram for this but he was not familiar.. can you advise dosing of Ultram for RLS? I can print your response to show my doc. I am also severely iron and B12 deficient (just found out 2 weeks ago) and am on shots for the b12 daily and iron infusion. I had Gastric Bypass in '04 and am also on disability for Fibromyalgia. (I don't take any meds for that)

Anyway, I have no insurance for medication coverage right now and the Requip is breaking me, however Ultram is $4 at Wal-Mart! Should I try to convince my doctor to let me switch?

Pamela R., age 49

Medical Reply

Ultram is often used by RLS specialists to treat this disorder. It is very effective for most and tends to be very well tolerated. It is also very safe when used in the low doses that treat RLS.

However, there is no reason (other than financial) not to combine Requip and Ultram. This combination may work well for you. In May, Requip will be available as a generic (and thus likely much cheaper) so this drug may be a better option. In addition, taking the Requip with food should reduce or eliminate its side effects (but you may need to take in one hour earlier as food delays its absorption).

Iron infusion therapy is very often very effective to reduce or eliminate RLS symptoms so that may end up being very helpful for you.

Sent: Wednesday, February 27, 2008 6:29 AM
Subject: Requip and Mirapex cause melanoma?

My doctor has just prescribed Mirapex 88 micrograms I am not sure of it as I checked up on warnings and precautions and found there to be a possibility of a higher chance of melanomas developing, I also read this for Requip. Can I ask what your opinion of this is? Are there other drugs to help that do not have carcinogenic possibilities? Would painkilling drugs help?

J.G.

Medical Reply

Although both Mirapex and Requip have warnings about melanoma, you have nothing to worry about. Every drug that is used for Parkinson's disease has this warning as there is a higher incidence of melanoma with Parkinson's disease. There has never been a reported case of melanoma due to a dopamine agonist such as Requip or Mirapex.

Sent: Wednesday, February 27, 2008 10:43 PM
Subject: RLS questions?

I have had RLS my whole life. I mostly went untreated because when I would mention it to a doctor, they paid no attention and basically blew me off. I was embarrassed to bring it up, as it was very hard to describe and no one knew what was wrong with me. After many, many sleepless nights, and researching at the library, then on a computer, I discovered this awful thing had a name: RLS.

The only relief I get is by walking around. It comes back when I lie down, though. Movies and places where I have to sit set it off as well. Finally, I was offered Parkinson's medication one day, but the thought of it scared me so I declined. A few years later I finally tried Requip and Mirapex. The Requip, which I only tried one time, gave me one horrible night---I had sharp shooting pains down all my extremities and got absolutely no sleep that night.

The Mirapex I only tried one night as well and it did not help me, either. I resorted to sleeping pills for the first time in my life since I was so sleep deprived, night after night. Ambien gave me terrible nightmares and made me feel drunk, so after a few of them I switched to Lunesta 3 mg, which I took every night for a year (I started out only taking half of one, then upped the dose, as my body got used to them quickly). This helped me sleep and when I was sleeping I didn't have to feel the awful feeling and shake my leg and get up and walk around, etc... but it gave me an extreme case of the munchies every night---late at night, and I packed on some weight, and got heartburn and acid reflux pretty badly.

I finally quit taking those, and was given Klonopin to help "relax" me so I could get some sleep. I was taking about 1/3 of a one milligram pill a night (I was told to take 1 mg. a night, but that made me too tired the next day so I didn't), and I noticed it seemed to calm down my leg enough that I didn't have to get up and pace the floor half the night. My leg still had sensations, but they were much more mild (maybe if I took the whole pill it would have been total relief???). After a couple months I felt uncomfortable taking something that I later read had an addictive nature and "terrible withdrawal symptoms", so even though it was helping me I cut down to only taking it a couple times a week---sometimes only 1/4 of one, which I don't know is doing much of anything.

I did notice that when I cut down (first I stopped completely for two weeks) my RLS got much worst---must be from not taking the Klonopin. It's been pretty bad now, every night. It's only in one leg the last couple of years (used to be in both, and at times would alternate legs and feet, but has only been in one leg and foot for some time now). I did have a test a couple years ago and my iron levels were ok at the time. I have taken notice, and I am not sure if this is possible ---but I just read the same thing on another RLS board tonight so maybe I'm on to something--- but it almost seems like when I eat a lot of sugary things before bed, my RLS is worst that night. May be a coincidence, but who knows--- now I know I am not the only one to make this possible connection. I would like to know if anyone else has noticed this possible connection. I do know that a lot of med's make my RLS really bad---like Benadryl, so I avoid those.

I don't feel comfortable taking anything which has bad side effects, or make you gain weight (I need to lose some, not gain more) or that I have to take every single night. I just don't know how I want to proceed at this point. I also suspect I have Fibromyalgia---I have done research on it and I have the symptoms of it. I wish everyone good luck and hope we can all get some much needed relief and sleep.

EM

Medical Reply

Klonopin is an addictive drug and mostly helps RLS patients sleep rather than relieve the symptoms which is why I never use or recommend this drug for RLS (it also has a very long half-life of 40 hours which typically causes next day sedation as you have already noted.

It is too bad that the dopamine agonists (Mirapex and Requip) did not work for you. If you are sure that you started Requip at the lowest possible dose (.25 mg) then I would not retry that drug but it may be worthwhile retrying Mirapex and working up to a higher effective dose (assuming that you had no side effects on that drug).

AN alternative includes painkillers (opioids and tramadol) which are fairly safe and very effective at the low doses usually needed for RLS. Anticonvulsants (Neurontin and Lyrica) are also good choices for RLS. Lyrica is now approved for fibromyalgia so may be quite beneficial for your problems although weight gain can be an issue for some with this drug.

It is quite common for RLS patients to worsen with carbohydrates, especially refined ones like sugar. You should download our free medical alert card on our homepage as it contains all the drugs (including Benadryl) that worsens RLS and thus should be avoided.

Sent: Monday, October 01, 2007 7:12 PM
Subject: RLS and Requip?

I was recently diagnosed with RLS.  Even though I had symptoms for many years back. but my symptoms were not so much defined as to explain to doctors. I had been told that my pain with related to FM only. but lately I wasn't getting any sleep and when I fall sleep I tight my muscles so badly, that I even wake up and I find myself pointing my toes like a ballerina. now, it is not only my legs but I have tingling in my arms too ALL the time.

I have been prescribed several medications. I was on Requip (the lowest dose) before bedtime and after a few days I wouldn't help anymore. I have tried Lyrica and Neurontin and I get side effects such as shortness of breath. I was ready to try Elavil but I just read that it may worsen the RLS symptoms. Which medication could I try, that wouldn't be so harmful as to the side effects or bad for my health in the long run. I am getting desperate. I don't get enough sleep and I feel weak, painful and numbness during the day.

Libby C.

Medical Reply

Before giving up on Requip (or Mirapex), the drugs of choice for RLS, you should make sure that you try adequate doses. If the lowest dose of Requip (.25 mg) did not help then higher doses should be tried before determining that the drug does not help. Typically, Requip can be increased to 4 mg (16 times the lowest dose that you took) but most RLS patients do well with 2 mg or less.

Sent: Friday, February 29, 2008 6:00 PM
Subject: RLS correlation with other conditions?

I am a 28 year old female. I've been diagnosed with fibromyalgia, but have been told in very plain terms by my neurologist that it's just a term they are using because they don't know what's wrong and never will have answers for me. To treat that I'm taking Gabapentin 600 mg three times a day. My primary care doctor has me on Trazodone 50mg before bed. I'm taking Zyrtec, Singulair and if needed Albuterol for allergies and possible asthma. I also have to carry Benadryl with me due to allergic reactions to disinfectant products. I'm also taking metoprolol 25 mg twice daily for cardio-neuropathy.

During a particularly horrible flare up period of whatever is wrong with me, I was in and out of hospitals and doctors offices for six months. At one point I was sent to a psychiatrist who put me on Paxil for 7 months. He said it would help the fibromyalgia. It made me feel horrible. I was mistakenly on the maximum dosage of Zoloft for three months due to a miscommunication between my doctors.

I have unexplained visual disturbance episodes, decreased sensation, and numbness on my left side and episodes of severe headaches currently thought to be possible migraines. I do not have any of the tender points or trigger points associated with fibromyalgia. I Prolonged severe pain seems to bring on pseudo seizures. I was supposed to have intense physical therapy for paresthesias, but the therapist wouldn't do it without a diagnosis that they felt explained it. I have just been diagnosed with RLS/PLMD this week and have added Requip to my medication list. I'm on a graduated increasing dosage for 14 days.

Four family members on my father's side of the family have/had MS or forms of it. My neurologist has ruled out MS and any other neurological disorder based on an open MRI of my brain and the findings of his exam. I'm wondering if RLS is somehow connected to my other issues and if they could all have a common cause. Since both the RLS and the cardio-neuropathy are neurological, I'm curious about a connection. My ophthalmologist feels that my visual disturbance episodes are neurological as well.

I'm also wondering if the SSRI's I've taken in the past could have made my RLS worse. I have symptoms all the time. I can't get to the main road out of my neighborhood as a passenger in a car without having my legs hurt of fall asleep. I have to constantly switch arms on the steering wheel while driving because my arms hurt, tingle and go numb. Whenever I move my arms, I get weird sensations like I stuck my arm in a freezer followed by tingling. Reading is difficult because I struggle with both my arms and my legs tingling, crawling and burning sensations generally followed by them going numb.

I always have my legs in motion if possible when I'm sitting. Should the Requip help my symptoms improve during the day as well as at night? Could my other issues or treatments for them be affecting the RLS? Does RLS cause any other conditions? Can RLS cause the tingling and burning sensations in areas like the back, hips and shoulder blades? If the SSRI's worsened the RLS would the effects have stopped upon stopping the SSRI's or would it have lasting consequences?

Thank you very much for taking the time to read this. I'm newly diagnosed and am trying to find out as much as I can. I really appreciate your website. It is very informative.

Medical Reply

SSRI antidepressant medications only make RLS worse while taking them. Therefore, any past use of these drugs would not be responsible for any worsening of your RLS. RLS is associated with some neuropathies (in that it is more common in patients with some neuropathies) but there are no other links to nerve conditions.

Once RLS gets more severe, it can spread to any body parts. However, your symptoms (in your other body parts) do not sound that much like RLS as the RLS symptoms occur only at rest and are relieved by movement.

Requip lasts about 6-8 hours so if symptoms occur earlier in the day it is quite common for doctors to give up to 3 doses per day to cover those symptoms.

Sent: Tuesday, March 04, 2008 2:02 PM
Subject: Magnesium for RLS?

Is there any updated information on the role that magnesium deficiency might have in RLS? I'm also interested in any research on supplemental magnesium intake to help improve nocturia.

Karen U.

Medical Reply

Information on magnesium and RLS has been sparse. The studies indicating that it helps are very poor (and do not add sufficient evidence to warrant using magnesium for RLS) while some other research (more scientific studies) indicate that magnesium likely does not help RLS at all.

More research is necessary but at this time we cannot recommend magnesium for treating RLS.

Sent: Wednesday, March 05, 2008 4:23 PM
Subject: RLS and Requip?

I have had restless leg syndrome for many years, however it was tolerable, most times, although I wasn't sleeping, it wasn't something that I went out of my mind with.

Then I went last August 2007 for a sleep test, and it showed I not only had sleep apnea, but I also have sever RLS (136 instances per hour)...they put me on Requip, started at .25 mg and over the next 3 months I had to increase it until I got to a dose that worked. I am at 2mg now, and although I must say it does work, after an hour of taking the medication, the twitches stop.

At 2 mg of Requip, I get nauseous and have to go to bed right away. My doctor tried to get me to cut back to 1.5mg to see if that was better, I couldn't. What used to be a matter of just lying awake, is now 100 times exemplified by taking Requip...but I can't seem to get off of it. My hand has been numb for about a month or more now, I even get restless leg during the day, which I never did before. But everyone, including your advice, is to take Requip.

Is there another option for me? How do I get off of this drug without going insane? I know it must seem extreme, but I just can't stress how bad it is.

Jackie Y.

Medical Reply

It is really not clear whether you need Requip at all.

Your sleep study cannot diagnose or quantify your RLS. The 136 instances per hour are the amount of PLM (leg kicks) per hour and is separate from RLS (although PLM are present in over 85% of RLS patients they also occur commonly in those without RLS). It is quite controversial whether PLM should be treated at all. Many experts believe that they should not be treated with medication (although they are very responsive to dopamine agonists like Requip).

It sounds as if Requip has caused augmentation of your RLS (worsening of RLS from taking Requip). We generally recommend stopping the Requip when this occurs in a significant manner (as it appears to be in your case). You will need a painkiller (opioid or tramadol) for a few weeks to take care of worsening RLS symptoms after going off Requip.

If your PLM still need treatment (which may be difficult to decide), then an anticonvulsant (such as Neurontin or Lyrica) may be very reasonable choices.

Sent: Saturday, March 08, 2008 9:18 PM
Subject: Topamax for RLS?

I have pretty bad RLS and am not taking anything for it at this time (I was taking Lunesta, then Klonopin for a short time). I just went to a neurologist for treatment of migraines, and I mentioned my RLS while I was there. He wants me to take Topamax to prevent my headaches, but he also said it "might" help with the RLS, too. I have some neuralgia pain in my legs and feet, as well.

Do you know anything about that? Does Topamax give any relief for RLS? That would be great to treat two issues with one medication. Can any RLS medication (even pain relievers) be taken in addition to the Topamax? How about Lunesta if I can't sleep?

I have discovered that sugar/carbs at night make my RLS worse. I also discovered that Soma made it worse (and I only took half of one, but I shook my leg and foot for 3 hours afterward!).

Thank you for your wonderful site. You have helped more people than you know. This is the best site I have found and I recommend your site and book to everyone.

Eve

Medical Reply

There is actually only one published study that has examined Topamax for RLS and found it to be effective. However, most anticonvulsants seem to be helpful for RLS and I have had several patients respond to Topamax. If it does not help your RLS, then it can be combined with the drugs of choice (Mirapex or Requip), painkillers or sleeping pills such as Lunesta.

Sent: Sunday, March 09, 2008 1:33 PM
Subject: Legs twitch?

If I drink more than a half glass of any cola my reaction is like RLS. My legs twitch! Also, I do take meds for Night-time RLS, but certain sugary foods bring the symptoms on in the day time. For instance, yesterday I ate zucchini bread and it brought on agitation and movement in my legs.

Sometimes I think I am losing it,
vlw

Medical Reply

Caffeine is well known to worsen RLS in many patients. Although zucchini bread has not been mentioned as worsening RLS, many patients do notice that carbohydrates bother their RLS.

Sent: Sunday, March 09, 2008 5:09 PM
Subject: Atarax and RLS?

Hello, I have had severe restless legs for years which I control with Requip. I also have interstitial cystitis and my doctor wants me to take Atarax 25 mg. Since it is an antihistamine and Benadryl sets my legs off like crazy, should I even bother trying this? Do you have a list of drugs that typically do not work with RLS patients?

Ronni W.

Medical Reply

All sedating antihistamines tend to worsen RLS. As Atarax is very sedating (similar to Benadryl), it most likely will worsen your RLS.

Check our RLS Treatment Page for the list of medications to avoid. You can also download our free medical alert card which lists all the medications that worsen RLS.

Sent: Wednesday, March 05, 2008 8:30 PM
Subject: Severe RLS?

I have read most of all the letters concerning RLS Patience. My husband has very very severe RLS it is in his arms and hands and he has taken every drug imaginable that is usually described. NONE help. Oh maybe for a minute then right back to the same old sleepless nights and he cannot even relax enough to sit and watch TV. He has to stop the car while driving home from work and walk before he even get close to home. The doctors here almost OD him on Mirapex!!! He is now on Requip and Ambien and Ativan.

The man cannot function because of all the drugs. This is just out of hand. He has been to sleep clinics like everyone else. He literally get no sleep. And nothing works. The Requip makes him sick to his stomach. And the other drugs he takes with it makes him just terribly tired all the time. I fear he will have a bad accident on the way to work some morning. The doctors. just want to increase pills but all it does is make him worse. He has tried every single one that is mentioned one this web site. With no results. The Dr. here said he has the worse case he she has ever seen.

I have read reports of Dr. Christopher Earley in Baltimore's Sleep Clinic and he has had great success on severe RLS patience. He has made some kind of discovery of the iron in the brain receptors. Do you know anything of Dr. Earley's studies?

Vicky G.

Medical Reply

Dr. Earley's group at Johns Hopkins have used intravenous iron therapy to help treat (not cure) RLS. However, this therapy is only done on an experimental basis (he would need to be in a study to receive this therapy) and not given otherwise (unless the patient has iron deficiency anemia that does not respond to oral iron therapy).

Your husband sounds like an excellent candidate for painkillers (opioids or tramadol) which are extremely effective and very safe when used in low dose and supervised by your doctor. Have your husband speak to his doctor about this treatment (check our RLS Treatment Page for more information on the available drugs).

Sent: Tuesday, March 11, 2008 3:01 AM
Subject: Klonopin and OxyContin for RLS?

I have been suffering from RLS for at least the past 3-4 years; I am 20 years old now. I have been suffering with severe pain specifically in my legs around my knees with the RLS. I went to the doctor for the first time in July of 2007 and was prescribed 1 mg Klonopin at night. That didn't work too well and my dose was upped to 2 mg at night.

Sure enough that put me to sleep but I felt like a zombie during the day. I tried Requip for a short period of time and that did absolutely nothing for me. So then in Sept. 07 I was put on 10 mg OxyContin, one tablet in the morning and two at night time. Along with the OxyContin I was prescribed 10 mg Norco for breakthrough pain. And lately I have been noticing that my current regiment is quite working for taking away all of the pain.

So I was wondering if I took 20 mg of OxyContin in the morning and night with something different for breakthrough pain would work? If so what would you recommend for the breakthrough pain?

Devin A.

Medical Reply

Klonopin usually does not help RLS symptoms but as you have already noted it does help RLS patients sleep. However, it has a very long half-life and causes next day sedation quite frequently (which is in part why I never recommend this drug to be used for RLS or sleep).

20 mg of OxyContin twice daily would likely eliminate your RLS symptoms but that is a fairly high dose of opioids. Although you may do well with that dose, concerns about dependence may arise and with it tolerance (which often leads to escalating the dose to relieve symptoms).

If you have not already tried tramadol, it is worth trying this drug which is not really an opioid and has a very much lower dependence/tolerance concern. It can be used for breakthrough RLS or to treat your daily RLS symptoms (it can even be alternated with the opioids when it works well for RLS).

You may also consider adding Neurontin or Lyrica which may enable you to decrease your opioid requirements. Even though Requip did not help you (which makes your diagnosis of RLS somewhat more questionable as over 90% of RLS patients respond to dopamine agonists), Mirapex would be worth trying.

Sent: Tuesday, March 11, 2008 9:16 AM
Subject: MSG causes lower dopamine levels?

An "alternative" group in Holland claims that aspartame and monosodium glutamate (msg) lower your dopamine level. I know that some substances act like a trigger for RLS, (msg does for me) but I never assumed that it really lowers your dopamine. To find evidence of this I searched on the internet and I found a lot of sites that claim that fact, but couldn't find any scientific evidence.

Marleen S.

Medical Reply

There are some articles in the medical literature (you can do your own medical literature search through PubMed) that have found that monosodium glutamate increases dopamine levels.

There is nothing in the literature that links msg and RLS although some patients have noticed this connection similar to your case.

Sent: Tuesday, March 11, 2008 7:15 PM
Subject: Elavil and Mirapex for RLS?

I have had RLS and PLMD most of my life, but it has gotten worse during the past 10-15 years (I'm 54). My doctor gave me Elavil which worked for awhile, but I slept like I was drugged. I also take Prozac in the am. My doctor gave me Requip, but I didn't sleep for the first 3-4 nights. He then prescribed Mirapex (.5 mg) once before going to bed. I have been on it for approximately 90 days. It works on my RLS, but if I don't take it for one day or too late in the evening, my RLS is much worse.

I also go to sleep around 11 pm and wake up at 5 am not able to go back to sleep. I have headaches which I attributed to sinus/allergies, but am beginning to think it is because of the Mirapex as I get them most every day. I saw where you recommended not taking the medication to see if the headaches go away, but I would rather put up with the headaches than have the RLS return.

Do you think I should see my doctor and possibly increase my dose?

Jean N.

Medical Reply

Since most antidepressants worsen RLS, Elavil is not a good choice for treating RLS (except if it helps you get to sleep before the worsened RLS symptoms kick in). The drug (as you have already noticed) may also cause you to feel drugged.

Your Prozac may also be causing some worsening of your RLS. If appropriate, a chance to bupropion (Wellbutrin) may be helpful.

If the Mirapex is causing headaches then increasing the dose is not the right thing to do. You can stop the Mirapex but make sure that your doctor gives you a prescription for an opioid (Vicodin, oxycodone, etc.) to cover your RLS symptoms temporarily. If the headaches go away off Mirapex, you may consider trying Requip instead.

If the dopamine agonists (Mirapex and Requip) do not work for you, then you may consider trying the anticonvulsants (Neurontin or Lyrica).

Sent: Friday, March 14, 2008 3:32 PM
Subject: Requip Question

Requip works wonders for my RLS symptoms, but my prescription plan has changed, and Requip is no longer covered. Is there a generic alternative to Requip?

M. J.
Baltimore, Maryland

Medical Reply

A generic for Requip should be available some time after May.

Sent: Thursday, March 20, 2008 6:13 PM
Subject: Lyrica for RLS?

Hello I have had RLS for 1 year about the same time I got fibromyalgia. The new drug Lyrica works wonders for the RLS but so far has not done much for the constant entire body pain. Just thought I would give my 2 cents worth.

Angel,
Ontario, Canada

Medical Reply

Lyrica is used by many RLS specialists for RLS symptoms with good results. Studies have also demonstrated benefits for fibromyalgia (which is how it got approved by the FDA for use in fibromyalgia in the USA) but as with all drugs, your mileage may vary.

Sent: Saturday, March 22, 2008 9:00 AM
Subject: Sinemet and augmentation?

In all probability I’ve dealt with RLS all my life. It seems to run in my entire family. It wasn’t until I was an adult I notice that other people could actually sit still! About 10 years ago when I was so sleep deprived I was loosing touch with reality, I found my way to Sinemet and experienced what sleeping all night meant.

Over the years the dosage has been increased and now augmentation is rearing it’s ugly head. I’ve tried both Mirapex and Requip and my heart starting pounding. Has anyone else had that happen? If I stuck it out for a week or so would it stop?

Is it possible to come off the Sinemet for a couple of months and come back to a lower dosage. Sinemet has been a nice ride. I’ve tried most of the other options and find my tolerance builds quickly. Sinemet has been wonderful but I know I need to do something. The RLS wakes me up and is with me all day now. I just keep moving in the morning and start with instant (10/100) and a CR 50/200 early afternoon. If I stay in motion I can keep going until early evening when I take one or the other or both again early evening. Before bed I’ll take 1 to 1.5 of the CR.

Would the patch be an option? I’m 58 and work with finances all day. The fog is getting pretty thick in my brain some days but this constant jerking and twitching is getting old.

Nancy

Medical Reply

You can stop Sinemet suddenly but you will need a painkiller (tramadol or an opioid) to take care of your RLS symptoms. If you tolerate the painkillers, then they may be an option for longer term use. When using Sinemet on a daily basis, it is most likely that you will continue to experience augmentation.

The Neupro patch may be an option but it is somewhat expensive (and there has been a quality control issue that has just resulted in a recall making this drug's availability in the near future). Also, it might cause palpitations similar to Mirapex or Requip.

A Reply from Nancy

Sent: Wednesday, March 26, 2008 9:16 AM
Subject: RE: Sinemet and augmentation?

I stopped taking the Zoloft and that has helped to reduce the amount of Sinemet I’m taking….What about using pain killers for a few months …then Sinemet… kind of going back and forth? I’ve been using Sinemet for almost 10 years and during that time it has been a miracle drug. Trying to find someone to prescribe long-term use of painkillers is difficult. My partner has degenerative disc disease…13 surgeries and fusions and still has 4 disc in the neck that are blown. With Medicare/Medicaid, the clinics that will take her insurance treat her like a druggie. Pushing retirement age and I just don’t want to go there.

Last winter I had a cold I couldn’t kick and the PA Tussionex and I really didn’t take much Sinemet. The amount of the Sinemet that I needed decreased for a few months. The PA said she had read an article where they were looking at antihistamines and their positive relation to neuromuscular diseases. Any thoughts…

Other than the heart palpitations being annoying is there any real danger from them…i.e. should I reconsider Mirapex or Requip?



Nancy

Medical Reply

Zoloft and other SSRI antidepressant medications tend to worsen RLS so reducing the amount should help. An alternative treatment would be to change to Wellbutrin which does not bother RLS.

It would be a better plan to alternate Sinemet and a painkiller every few days so that you would have no chance of getting augmentation or tolerant/dependent upon the painkiller.

Antihistamines (the ones that cause drowsiness) worsen RLS however the newer non-drowsy ones (like Claritin, Allegra) do not affect RLS. Their relationship to neuromuscular disease is still very unclear.

Palpitations may be benign but you would need a 24 hour Holter (EKG) monitor to clearly determine this issue.

Sent: Saturday, March 22, 2008 3:11 PM
Subject: RLS in lower back?

I notice with great interest of the person having RLS in the lower back. This is exactly what I have! I've experienced this condition for over twenty years with the classic symptoms being the same as in the legs -- after being at rest for a short time, sitting, laying down, etc. My general practitioner has prescribed several medications, including Vicodin every night, which, until recently, was the only relief.

A visit to a spine specialist resulted in a complete change in the quality of my life. He prescribed Requip. The initial dose was .5 mg leading up to 1.5 mg per day. I would be interested in learning of others who may be (in my opinion) taking this miracle drug.

Andy C.

Medical Reply

You can read many of the older letters to see that there are many who respond nicely to Requip. This is one of the most commonly prescribed drugs for RLS.

Sent: Monday, March 24, 2008 6:05 AM
Subject: Trying to get off of Mirapex because of augmentation?

I have had RLS for the past 16 years. I was treated successfully with Sinemet for the first 8 years until I experienced rebound and augmentation of symptoms. I switched to Mirapex, and overnight the symptoms were under control. Eight years later I am now experiencing augmentation again. What is you advice for getting off Mirapex in the easiest way possible? Any suggestions for a different medication to treat my RLS?

I am 60 years old, newly retired, and in good health except for the RLS! My doctor has be taking lorazepam (1-2 grams) each night, tapering by 1/3 of the Mirapex dose every three nights. I seem to be going to sleep alright, but up struggling with RLS after a few hours of sleep until morning. I’d appreciate any advice you could give me. 

Charlotte

Medical Reply

Lorazepam does not treat RLS (as you have already found out) but just helps you get to sleep. There are better hypnotics (such as Ambien) to help you sleep, if a sleeping pill is necessary.

A better approach would be to change to a painkiller (tramadol or opioid) or anticonvulsant (Neurontin or Lyrica) which should help you avoid the need for a sleeping pill.

Sent: Wednesday, March 26, 2008 6:21 PM
Subject: RE: Treatment for RLS, with narcolepsy and after a heart attack

My mother is finding that the Requip is not working for her through the night, and I was wondering if she might be able to supplement with gabapentin in the evenings, as this appears to be something to consider for very painful RLS. What are your thoughts on this, and on using gabapentin for RLS?

Is there something else that might help her through the night when the RLS is so very bad. Also, I am concerned about the effect of these medicines on her heart, and was would like to know which is the least harmful for this?

Debbie K.

Medical Reply

Gabapentin (Neurontin) is a good choice which might help supplement her Requip. The drug sometimes causes sedation (which may be helpful at bedtime) but may hangover long enough to result in next day sedation. Lyrica is another choice.

Alternatively, she could add a painkiller which works very well and is safe when kept at low dose. These medications should not cause any heart problems.

Sent: Friday, March 28, 2008 8:14 PM
Subject: What's it called?

I wrote to you, perhaps several months ago regarding this issue but cannot find my post and am not sure that I asked the same question. I have been on a regimen of Ultram, Vicodin, and Neurontin for RLS/ PLMD. However, as I previously mentioned, about 60 to 90 minutes after taking my dose of Ultram and sometime Vicodin I experience a very significant increase or even premature beginning of my RLS/PLMW symptoms which again lasts about any hour or so after which the symptoms seem to taper off and then follow a somewhat normal pattern-- if there is such a thing.

I have had to discontinue the Ultram due to this "phenomenon" as the premature symptom pain was often too great. I tried stopping the Ultram for several weeks and then restarting but with the same painful results. My Vicodin followed a similar pattern but often, with a week's break, I again can have a period of symptom relief but with resulting insomnia. My Neurontin seem to be now following this pattern. Is there a name for this. Is it rebound?

I have been through Requip, Mirapex, Sinemet, and Klonopin which led to my present regimen. Is this experienced frequently by others or is it just me? I hope you can understand this.

Mark

Medical Reply

It is very unusual to have worsening of RLS within a the first few hours of taking a medication that usually helps RLS. It is even much rarer (I am not sure that I have ever heard of it before) for someone to have this unusual phenomenon with multiple drugs. Therefore, I have absolutely no explanation for your response to your RLS drugs.

Sent: Tuesday, April 01, 2008 9:16 AM
Subject: MEDICAL HELP

I found your website and read extensively about RLS symptoms. I am sure I am suffering from it for about 20 years now but on no medication yet. I am 34years and have had about three miscarriages. Is there any connection between RLS and constant miscarriages. Secondly is there any connection between RLS and sexual excitement. Thirdly, which drug would you advice me to take without pregnancy and with pregnancy.

Medical Reply

There is no known relationship between RLS and miscarriages.

Sexual excitement often reduces RLS symptoms as does orgasm. However, some RLS sufferers may find this to be the opposite.

The drugs of choice for non-pregnant RLS patients are Mirapex and Requip. Pregnant patients are much more difficult. If symptoms are severe, low doses of oxycodone or methadone are amongst the safest and most effective of the available RLS drugs.

Sent: Friday, April 04, 2008 1:26 AM
Subject: Mirapex dose?

Have you heard of any patient with RLS taking 8 mg a day . My doctor prescribed 8 mg a day and I still have restless legs. Do you have any suggestions?

Joyce G.
Hardy, AR

Medical Reply

Requip is only FDA approved at 4 mg per day given in one dose. For patients who have RLS symptoms earlier in the day, 1 or 2 additional doses are often used (spread out during the day). Typically, it is very unusual to prescribe more than 4 mg for any one dose of Requip. If the 4 mg does not help (in one dose), it is very unlikely that increasing that dose will help (as you may have already found out).

Although over 90% of RLS patients respond to dopamine agonists (Requip or Mirapex), it may be that these drugs do not help you. It still might be worth a trial of Mirapex (do not exceed .75 mg) to see if that helps. If not, then painkillers or anticonvulsant medications may be very helpful.

Sent: Saturday, April 05, 2008 7:45 AM
Subject: DRUG INTERACTION?

I am a 35 year old male. I have been on dialysis for the past eight years. The past 2 years or so, I have had RLS. The past 6 to 8 months, I have been on Mirapex and Restoril. Mirapex alleviated the physical symptoms of the RLS, but a side effect was insomnia. My concern was the behavioral and psychological side effects of combining the two. I was taking 30 to 45 mg of Restoril per day, and I believe the standard dosage of Mirapex (.5 mg?).

I have ceased all medications due to sleepwalking episodes, daytime hallucinations, and I also experienced behavioral choices that I would not normally make. What exactly was I doing to myself?

A.C. in Phoenix

Medical Reply

It sounds like most of your side effects may have been due to Restoril, especially as you have exceeded the maximum dose of 30 mg.

You may want to try Requip (which is not eliminated through the kidneys so may be even easier to use for dialysis patients) and see if that does not cause insomnia. A better choice for insomnia is Ambien (shorter half-life and less chance of next day side effects).

Sent: Thursday, April 10, 2008 8:12 PM
Subject: Mirapex & Ultram together?

I continue to have great results with Mirapex and have for years now - since first reading about it here. I have recently been diagnosed with fibromyalgia, and in fact was going to take part in a long term study of Tramadol. However, they were going to require me to get off the Mirapex during the study and I was not willing to do that.

While I certainly understand the reasoning behind that, i.e. not being able to distinguish between which drug was providing what relief, I also want to better understand the interaction of the two. Tramadol was thought to be a good choice for my pain management, and I would like to pursue that unless combining both drugs is not a good idea.

I'd appreciate your thoughts.

Dave R.
Lexington, KY

Medical Reply

Tramadol is a good drug choice for pain management as it relieves pain about as well as Vicodin but has a much lower prevalence of tolerance/dependence. Mirapex and tramadol are often used together for RLS and many patients have used them together for years with very safe and effective results.

Drug trials can be a real "trial" for those patients who are well controlled on their RLS regimen and must change it for the drug study.

Sent: Thursday, April 10, 2008 8:26 PM
Subject: Nausea and Requip?

I have been taking 2mg Requip for Moderate RLS. The problem is that I fly small planes and the Requip has made me much more susceptible to motion sickness. Is there an alternative drug for RLS that doesn't have nausea as a side effect?

Ron V.

Medical Reply

The painkiller tramadol is often very effective for RLS and rarely causes nausea. The only concern is that sedation may occur (in a minority of patients) so you must be sure that you experience no drowsiness while using this drug.

Another choice might be Sinemet (low dose). However, this is also a dopamine drug and thus may produce some nausea also. Only trial and error can determine this in you personally.

Sent: Friday, April 11, 2008 7:37 PM
Subject: RLS interaction to Reclast?

I was advised to contact you for your opinion about how taking RECLAST for bone density would or might interact with my RLS. My bone density test was good except for a very small spot. My new rheumatologist thinks my arthritis might be hiding some problems and insists I must be on something beside calcium and vitamin D and lots of milk.

I tried Actonel which gave me heartburn for about a week. I can't afford $60 for one pill of Bonita so she suggested the once a year IV Reclast. I am concerned that this might make my RLS and PLM much worse than it is now. If the IV lasts a year that could be a very very long and miserable year for RLS. I can not take Mirapex or Permax. They make RLS 100 percent worse for me. I had been on Xanax many years ago but now I just take the magnesium-calcium-zinc combination along with folic acid.

 As long as that works most of the time I prefer to to continue with it and avoid drugs that can and have caused me more problems.
What would you advise about the IV once a year drug RECLAST and RLS?

Thank you
Alice L.

Medical Reply

There is no known interaction between Reclast and RLS nor is it in a class of drugs that is known to worsen RLS. Therefore, it appears that the drug should be safe.

You may want to consider the use of anticonvulsants (Neurontin or Lyrica) or painkillers for your RLS.

Sent: Sunday, April 13, 2008 5:21 PM
Subject: RLS after trauma?

I was perfectly fit and healthy at 21 and serving in the Australian Defence Force, There has never been any medical history of RLS, PLMD in my family. In 1988 I was involved in an accident on board the Warship I served, where I was struck on the right side of the head by a Flag Pole which fell, it was made of steel; I was knocked unconscious for 20 minutes and lost a lot of blood.

I have suffered with RLS, PLMD, PTS, and essential tremor for many many years now, my Neurologist has told me it is getting worse. First of all I was placed on Madopar (similar to Sinemet) , I have tried calcium, magnesium and quinine. The Madopar was ok for a while but the effects came back. Calcium, magnesium and quinine had very little effect.

Currently I am on Inderal 40 mg during the day and Rivotril (clonazepam) at night time. And have the problem in hand but the drugs have many down sides to them.

So the question can RLS, PLMD, PTS and essential tremor be caused by a head injury?

Lee

Medical Reply

We do not really understand the role of trauma and RLS/PLMD, however many patients seem to notice that trauma may trigger or worsen RLS.

Madopar (which is similar to Sinemet here in the USA) works great for RLS in the beginning but then tends to worsen the problem (called augmentation). Mirapex or Requip are the drugs of choice and work much better for RLS/PLMD.

Your PTS and essential tremor are beyond the scope of this website.

Sent: Tuesday, April 15, 2008 3:52 PM
Subject: Clonazepam for RLS?

I have suffered from RLS for over 40 years. Finally about 8 years ago I talked with my primary physician about it. He quickly agreed that I was suffering RLS and reminded me that there was not a cure, but some medications that could help. He prescribed clonazepam and it has worked well for me. I started at .5 mg and am now currently at 1.5.

He did have me try Requip and I had horrid side affects after the second day, nausea, nightmares that I couldn't tell if they were real or not, dizziness, insomnia and more. I went back to the clonazepam. I recently read where clonazepam is addicting and would like to try to decrease the level I am taking or stop taking it. I tried to take it down .5 mg every couple of days. I ended up nauseated, migraine, and overall feeling terrible, including a trip to the ER for the migraine.

Were these normal side affects of trying to cut back on the clonazepam? Is there something I could take to replace it instead of Requip or Mirapex (I'm afraid of it because of my Requip experience)? Is there something I could take to help going off the clonazepam?

Susan L. J.

Medical Reply

Although many patients can take clonazepam on a regular basis without tolerance/dependence problems, this does occur fairly frequently. The symptoms that you are describing (when stopping the drug) are typical of withdrawal. The way to get off this drug is to slowly (over several weeks) taper off the drug. Clonazepam does not really treat RLS, but rather just helps the RLS patient get to sleep. Sleeping pills such as Ambien or Lunesta are much safer to use for that purpose.

Alternatives to using clonazepam for RLS are anticonvulsants (Neurontin, Lyrica, etc.) or painkillers.

Sent: Wednesday, April 16, 2008 2:22 AM
Subject: chronic RLS

I have suffered with RLS since age 10 and am currently on Requip 2 mg three times per day I started on 0.5 mg and have needed to increase this to current dose as symptoms get worse. I also suffer with Chronic Fatigue Syndrome and one affects the other. I rarely sleep through the night and have RLS throughout the day as well, wow betide me if I go and forget to take a dose or am late with it!

Does this mean I will have to keep on increasing the dose? What is the prognosis?

 Elaine M S

Medical Reply

If symptoms are getting worse since starting the Requip, you may be experiencing augmentation (worsening of your RLS due to taking Requip). A change to another class of RLS drugs (anticonvulsants or painkillers) may help your problem.

A Reply from Elaine

Sent: Thursday, April 17, 2008 12:16 AM
Subject: Re: chronic RLS

I have had the Chronic Fatigue Syndrome for the last eleven years or so. I have been taking Requip for two years now but am still plagued by RLS. I am also taking dihydrocodeine as a back up. This sometimes helps at night. Which drug would you suggest as an alternative to Requip? Would alternating drugs be beneficial in preventing augmentation?

Elaine M S

Medical Reply

The alternatives includes painkillers (opioids like the dihydrocodeine or tramadol) or anticonvulsants (like Neurontin, Lyrica, etc.). Augmentation occurs only with the dopamine agonists (Requip and Mirapex). If these drugs are used intermittently (alternated with other drugs), augmentation cannot occur.

Sent: Wednesday, April 16, 2008 12:39 PM
Subject: Sinemet for RLS?

Could you please advise me would Sinemet be useful for RLS which comes in my legs, arms and back, but has not been every night for a while , it has been quite good for a change. So I wouldn't want to be on something every night . Can you take Sinemet when it starts to ease the symptoms? 

I am asking you as my doctor doesn't know much about RLS and relies on info I can give her. I see her next week. I am also on iron at the moment, which helps.

J.G.

Medical Reply

Sinemet is a very good RLS drug when used intermittently. It should not be taken daily as it will predictably cause augmentation. However, in your case, it should work quite well.

Sent: Friday, April 18, 2008 9:30 AM
Subject: Sleep Aids and RLS?

My husband has RLS, which comes and goes and can usually be tamed by taking “Restful Legs” or something similar.

I do not have RLS, so at times I use OTC sleep-aids to ensure a full and restful night of sleep. However, every time my husband has taken something containing ANY TYPE of sleep-aid, his RLS becomes completely uncontrollable! Are there any sleep-aids that DON’T cause that kind of reaction?

Traci Q.

Medical Reply

All OTC sleep aids contain Benadryl or a closely related antihistamine product. They all tend to worsen RLS. If your husband needs a sleep aid, he should get a prescription for Ambien or one of the other safe and effective sleeping pills.

Sent: Sunday, April 20, 2008 9:06 AM
Subject: RLS/Sinus Infection Connection?

I have had RLS for most of my life, along with sleep apnea. I had sinus surgery about 6 weeks ago to help with the sleep apnea, and about 2 weeks ago the surgeon started treating me for a new, post- surgical sinus infection. He prescribed cephalexin (Keflex) 500 mg 3 times per day, plus Rhinocort Aqua spray 2 times day.

About that time my RLS symptoms, which had been well controlled, became much worse, starting mid-afternoon. I am now having symptoms mostly during late evening (not unusual) and early morning (which I've never had before). Could this be related to the antibiotic? the nasal spray? the infection? the stress of surgery? lack of exercise as I recover? unrelated? I am currently taking 2 mg of lorazepam during the evening to reduce RLS symptoms, and I do sleep fairly well, but the RLS is still there.

Sue C.

Medical Reply

Your increase in symptoms is likely due to the stress of surgery and lack of exercise. Having said that, it is still quite likely that some other factor (which is not readily apparent to you or me) is causing this problem. The antibiotic, nasal spray or infection should not influence your RLS.

Whatever the problem, you may need additional medication to treat your current increase in symptoms.

Sent: Monday, April 21, 2008 4:48 PM
Subject: RLS and PN (peripheral neuropathy)

Apparently I have both RLS and Peripheral Neuropathy. However, I'm beginning to wonder. I was diagnosed with PN in the fall of 2006. The results of the nerve conduction study shows permanent nerve damage. I've had RLS for many years but never so badly as I did when taking Celexa and then Effexor. My doctor then looked at me like I was nuts and said there was no connection. But I knew better. Cause the RLS pretty much resolved after coming off of the Celexa. The Effexor XR made the RLS bad again but it never did completely resolve after coming off of Effexor. I was only on 75mg. Is there any relationship between the PN symptoms and the RLS? I swear, after much research, I'm beginning to doubt I even have PN.

I'm have a very difficult time trying to differentiate between what is PN symptoms and what belongs to the RLS. Many of the symptoms can be the same for both. It's *very* confusing.

7 days ago I was started on Mirapex at the lowest start dose of 0.125 mg. This has stopped the restless feeling of having to move my legs when trying to go to sleep. It also seems to have alleviated many of the symptoms I attributed to PN. I will stay at this dose unless it's obvious I need to increase it.

I've been taking Ultracet for well over a year. 37.5 mgs of Tramadol. I had an appointment with a new NP last week and she said no more Ultracet because Tylenol isn't going to help me and can only damage my liver. Especially since over the past few weeks I'd been finding I needed two Ultracet rather than the one I was accustomed to needing. She gave me 50 mg Ultram. It works wonderfully. And with the addition of the Mirapex I'm symptom free.

Yesterday and last night was the first time in many many months I didn't need Tramadol at all. So I took your advice and extended it to today and tonight as well for the 2 day drug holiday every two weeks. I'll be doing this on a regular basis from now on. However, today the burning/tingling and little guy with a map pin sticking me in random places that I associate with PN has reared it's ugly head again. What are good alternatives for times like this during the drug holidays? Opiates have no effect since I've been taking the Tramadol. None at all. I don't even get sleepy from them anymore. And I'm one of those people that's ultra-sensitive to drugs like that. If it states it *may* cause drowsiness I'm going to go sleep. I get none of that with the opiates anymore and no pain relief either. Hydrocodone is the one I'm referring to.

I can't take Neurontin because it made me suicidal. As well as other nasty side effects and that was only at 300 mg once a day at bedtime. Lyrica, for that reason, will never be given to me. Interesting to note that Neurontin depletes Vitamin B-12 and apparently did in my case. I've been taking B-12 and other B vitamins as well as adding some new supplements known to help PN. A case in point is a woman on a message board I found many months ago. She is to have spinal surgery and of course has gone through a battery of tests. The neurology team states that she must have been mis-diagnosed all those years ago because she doesn't have PN. Trust me, she did. I can tell you that the pain I was experiencing after stopping the Neurontin was about 90% worse than it currently is. It's gradually improved over the months to the current level I'm at now.

Thankfully, my new NP seems to be well versed in both PN and RLS. But I'd like to know what I could suggest for alternative nights? Even something that I could alternate for a few weeks at a time. I don't want to keep having to increase my dose of Tramadol. And I need to cover what the Mirapex doesn't.

By the way, I take Zyrtec for itching. It's the only thing that works for me. I take Atarax as needed at 10mg and have never noticed an increase in the RLS. I have noticed that it seems to decrease some of the burning I experience from time to time from what I assume is the PN. It doesn't always work but does most of the time. The problem is it makes me groggy for 2 days after just one bedtime dose of 10 mg. I take it only once in a great while. I also began Niacin (Inositol Hexanicotinate) and one 81 mg baby aspirin nightly for high cholesterol at the same time I began the Mirapex. I won't take statins and my NP agreed because of the connection with PN, the onset and/or worsening of symptoms. I also take a variety of supplements, B-12 as mentioned, Vitamins D, C, and E. Fish oil caps. SlowMag (magnesium). A couple of others that I'd have to have in front of me to list.

This site has been a real eye opener for me. I knew I had RLS...I guess. It just never was a real major problem until after the Effexor and the onset of what I've been told is PN. Can RLS cause permanent nerve damage? Is it possible I have only RLS and not PN? This stuff will drive a person nuts. I do realize that I'm looking for concrete answers where they may be none.

Barbara,
47 year old female with a diagnosis of PN and now finally also RLS.

Medical Reply

RLS and PN are often very confusing. The problem is that about 20% of RLS have an associated PN and RLS tends to more common in people with PN. However, there is a simple way to differentiate whether the PN symptoms are really part of the RLS (and not a separate disorder). If the PN symptoms come at rest (as with RLS) and improve with movement (again, as with RLS) then the PN is really a manifestation of the RLS. Also, if the Mirapex relieves the PN symptoms, then they are also more likely to be part of the RLS (Ultram may relieve both RLS and PN).

Your NP is right about avoiding the Tylenol in Ultracet. Plain Ultram (tramadol) works just as well for RLS. If you are having problems with drug holidays, then avoid them. As long as your usual dose of tramadol is working fine, there may be no need to take drug holidays.

RLS does not cause any permanent nerve (or any other type) damage. Although Neurontin may have caused problems for you, Lyrica is totally chemically different and may not share those adverse side effects (although that may still not convince you to ever try this drug which works very well for neuropathy problems).

There is a new purer form of Zyrtec called Xyzal which may work as well as Zyrtec but cause less (if any) sedation.

Sent: Wednesday, April 30, 2008 10:41 AM
Subject: RLS/PLMD/joint replacement/Flexeril

I have had RLS since I was 21; I am now 63. I participated in clinical trials at NIH and they discovered I had PLMD (2-3 jerks per minute). Both are 'manageable' with Klonopin (3/4 mg = 1 1/2 pills) and Mirapex (.75 mg = 1 1/2 pills); one gets me to sleep, the other keeps me asleep (most of the time). After taking the Quality of Life test at NIH, I was judged to have 'very severe' cases of both.

My daughter watched me once recently when I was napping in the middle of the day. She said my entire body jerks every 10 seconds, even my face contorts. She asked in wonder "don't you fall out of bed?". Actually I DO, but infrequently. She also asked "how do you ever get any rest?" Bingo - the question all we sufferers of RLS & PLMD ask!

Question 1: I wonder if all the kicking at night is why I have no cartilage left in my knees? It stands to reason that if I kick all night my knees will wear out sooner than if I didn't. I had a total knee replacement 3 years ago (left knee) and will probably do the same with the other knee soon. The surgeon who replaced the knee asked how I had been walking as the knee was in such bad shape he imagined the pain was intolerable.....Has anyone ever studied the orthopedic side of PLMD?

Question 2: I am taking 10 mg. Cyclobenzaprine (Flexeril) twice a day for a week for a pulled back muscle. And I'm sleeping like a baby, oversleeping in fact, and waking up more rested than I can remember EVER. How can I keep this happening after I stop taking the drug? I realize the antidepressant effect is there because I feel very calm and relaxed, but I LOVE how it affects my sleep!

Peggy

Medical Reply

Although it has not yet been reported, it seems logical that severe PLMS could result in knee problems. Typically, knee wear and tear occur more readily with weight bearing exercise (your effect of your weight on your knees is multiplied by walking or running which increases the forces on your knees).

Flexeril probably relaxes muscles more by causing sedation than direct muscle relaxation. This is well known so your improved sleep is not surprising (especially taking this with Klonopin which then gives you 2 sources of sedation). Typically, the sedation lasts quite a long time and may result in next day sedation (which does not seem to be the case in your situation).

I generally do not prescribe Klonopin for sleep as it has a very long half-life of 40 hours (that means that your body has cleared only half of the drug after 40 hours). This can cause next day sedation (often not appreciated by the user). In addition, this drug can be quite addicting even at lower doses. You could possibly use Flexeril on a daily basis but I far prefer the safer non-benzodiazepine sleeping pills, Ambien or Lunesta.

Sent: Thursday, May 01, 2008 2:54 PM
Subject: Changing drugs

I have found your website very interesting and have a question of my own. I have seen a very qualified neurologist in London who has re started me on Mirapex. Last time I was on it I had severe insomnia. He has told me to take a sleeping tablet now and again when I am desperate for sleep. But I am sure that sleeping tablets make my RLS worse so am very reluctant to take them.

He has also written to my very sympathetic GP with little or no experience treating RLS. In the letter he has suggested changing from Mirapex to Adartrel (ropinirole or Requip in the USA) if my insomnia continues or the Mirapex stops working which it did last time. Could you tell me if I change medication can I do a straight swap or do I have to wean myself off the Mirapex first which I would dread.

My GP does not know and has asked me to some research. The very good neurologist in London is very hard to get hold of and I am not sure whether I will be able to see him again.

Sue in the UK

Medical Reply

Adartrel (ropinirole) is a dopamine agonist which acts on the same receptors as does Mirapex. Therefore, if you do an equal dose shift from one to the other (typically Mirapex is twice as potent as Adartrel on a mg basis so you will double the amount of the new drug), you should have no trouble. However, it is quite possible that Adartrel may cause the same problems as Mirapex.

A Reply from Sue

Sent: Sunday, May 25, 2008 8:06 AM
Subject: Drug Holiday

I have been in touch with you before about Mirapex. I am from the UK and cannot find a website as informative as yours. I have a question. I have been taking 1 Mirapex 0.088 mg (Not sure what strength that is as I do not see that strength mentioned on your website) for 2 months. I also take 0.5 mg of Rivotril (clonazepam) before I go to bed as the Mirapex causes terrible insomnia.

Just lately I have started with the RLS again. I am suppose to up the dose of Mirapex but I know I will not sleep at all. I am wondering if I should try a drug holiday. Would this help do you think and what should I take in its place and for how long?

I will take your reply to my very sympathetic Doctor who needs as much information on this condition as possible.

Sue

Medical Reply

Your dose of Mirapex at .088 mg is the same as the starting dose of Mirapex .125 mg here in the USA. The difference is that in Europe and Britain they measure the base compound while here we total the whole compound (they are exactly the same doses, just expressed differently).

If your RLS is starting earlier in the day, spreading to other body parts like the arms and getting more intense, then you may be experiencing augmentation (worsening of RLS due to taking the Mirapex). In that case, you may increase the dose but if this keeps happening, you may need to consider a different class of medication to treat your RLS.

Taking a drug holiday might help for a while but your RLS would dramatically increase for a week or two while on the drug holiday. You would need to take an opioid (codeine, hydrocodone, etc.) for the drug holiday period.

A Reply from Sue

Sent: Thursday, May 29, 2008 8:22 AM
Subject: Drug Holidays

I hope you don't mind me contacting you again but you have been so helpful. I am that woman from the UK again. I have taken myself off Mirapex for a few days because as well as stopping me from sleeping ( I take 1 clonazepam to help) the RLS was coming back. I have been advised to up the dose of Mirapex gradually to 3 a day but I know I won't sleep at all if I do this.

So I have just started taking 30 mg of codeine as well as my clonazepam.0.5 mg. The trouble is I am sleeping so well that I am reluctant to go back on the Mirapex.

Sue

Medical Reply

My advice is to continue on the codeine as taking this once daily should be very safe and obviously effective for your RLS. I would also advise you to change the clonazepam (a benzodiazepine) to a non-benzodiazepine (zolpidem, zopiclone). These newer drugs are much safer for long term use and have a much shorter half-life (the time it takes for the body to remove half of the drug) than the very long 40 hour half-life of clonazepam.

A Reply from Sue

Sent: Sunday, June 01, 2008 4:51 AM
Subject: Oxygen Levels


I have been reading some of the letters and one was of particular interest to me. It was mentioned that giving oxygen after an operation relieved the patient;s RLS. Exactly the same experience happened to me.

I had an op earlier this year and was given oxygen for a couple of days afterwards. The nurses told me I as a shallow breather. While I was on the oxygen I had wonderful relief from the RLS. As soon as it was withdrawn the RLS came back within half an hour. Makes you wonder does,nt it. It I could have an oxygen cylinder in my house I would.

Sue

Medical Reply

Other than some minimal anecdotal experiences (such as your letter and a few others) there is no information on oxygen and RLS. As far as we know, there is no reason that oxygen therapy should help RLS. It is much more likely that the pain medications (opioids) given after surgery relieve the RLS symptoms and the oxygen therapy which is given at the same time is getting undue credit.

I cannot explain why your symptoms returned when the oxygen was stopped. However, if you try oxygen again when your symptoms are active without any medications on board and find that it helps, let us know.

A Reply from Sue

Sent: Tuesday, June 10, 2008 4:32 AM
Subject: Insomnia

I have contacted you before and found your responses extremely helpful, especially regarding the drug holidays. I have started Mirapex 0.88mg again as the codeine and clonazepam were becoming less effective. Mirapex causes terrible insomnia so I take 1 Zolpadol before going to bed ( I think this is Ambien in the States). Unfortunately the Zolpadol take a couple of hours to kick in and then only gives me about 4 hours sleep at the most.

I have been on this regime for only 1 week. I also noticed this morning that my RLS started about 6 am. I am wondering if I should up the dose of Mirapex but would that make my insomnia even worse ( though it cannot get any worse as it keeps me awake all night).

I cannot tell you how much I appreciate your support and advice. It has been almost a life saver to me.
Sue

Medical Reply

You do have a dilemma at this point. Increasing the Mirapex may cause more insomnia and as you may be experiencing augmentation, it may also worsen your RLS. It may be worthwhile to change to ropinirole (Requip here in the USA and Adartrel in Britain). This may work better but the only way to really find out is to try it.

If that does not work, then you should consider changing to gabapentin or other anticonvulsant drug (such as pregabalin). You might also try a more potent opioid like oxycodone (with or without the gabapentin).

Sent: Thursday, May 01, 2008 9:07 PM
Subject: carb/levo (Sinemet) for RLS?

How do I go off carb/levo ? My Dr. prescribed it for RLS it did nothing. My legs burn he diagnosed it as RLS which I think is wrong. I've found an exercise which works much better. I'm going off this med. should I cut it in half or what? it is carb/levo 25-100 mg.

Medical Reply

At the dose that you are taking, you can just stop the drug. Sinemet (carb/levo) is not recommended for daily RLS any longer (due to side effects). Mirapex and Requip are the drugs of choice these days and should be tried first.

Sent: Friday, May 02, 2008 2:58 AM
Subject: Periodic Limb Movement Day and Night

My husband is taking 4mg (1mg every 6 hours) of Repreve (ropinirole or Requip) for RLS with really great control. However he also has PLM.....day and night . Repreve isn't taking care of this added misery. He is able to cope most days, the evenings are awful. He sometimes resorts to taking 5 mg valium to get to sleep.

Is there another drug that he could use?

Shelley D.

Medical Reply

Typically, ropinirole (Repreve, called Requip in the USA) does a very good job and decreasing PLM. Your husband may need a higher dose in the evening or at bedtime to help eliminate the PLM that disturb his evenings and sleep. If that is unsuccessful, then adding a drug like Neurontin (gabapentin) may prove quite helpful.
 

Sent: Friday, May 02, 2008 12:53 PM
Subject: Elavil and RLS?

As far as antidepressants, is Elavil one of the worst for RLS? If so, how about a very low dose, 12.5 mg? Or would the dose make any difference? A Dr. wants me to try it, but I am afraid to even try a low dose.

Irene

Medical Reply

Elavil tends to worsen RLS but this can vary from person to person. If your doctor does not want to try Wellbutrin or trazodone (the 2 most RLS friendly antidepressant drugs) then desimpramine would be the best choice of the older class of antidepressant drugs (in a very similar category to Elavil).

Sent: Sunday, May 04, 2008 5:36 PM
Subject: My RLS story

I have had RLS most of my life. Starting back as far as I can remember, with a peculiar pause during my high school years in which case the symptoms were non-existent. Throughout my early to mid twenties, the symptoms were mild, gradually increasing as I got older. Now I am forty and the symptoms are in full force. It seems the later it is, the worse it gets. An inability to keep my legs, ( and now arms ) still, are one problem.

Another problem is the inability to wear jeans. Sweat clothes, or very loose fitting, light weight pants, and loose fitting T-shirts are now the norm. Textures seem to play a big part in the equation. I can't stand the texture of the bed sheets at night under my legs, so I have to use a rough textured towel. The rougher the better. I'm still not sure to what degree temperature plays a roll, but the cold does seem to lessen the symptoms a little.

I was just wondering if hormonal changes have anything to do with RLS, since I didn't have any symptoms during my mid teens to mid twenties, a time when testosterone levels would be at their highest. Also I would just like to add that my RLS affects the left side of my body much worse than my right side.

Steve

Medical Reply

Your RLS story is very similar to many who have had it for a few decades. It does worsen in the evening and as the disorder progresses, symptoms move to the arms (and at times, other body parts).

We do know that hormones influence RLS in many female sufferers but this is still not well understood (and of course, even less so in men).

If and when your symptoms warrant further treatment, consider going on Requip or Mirapex which should end your suffering.

Sent: Monday, May 05, 2008 7:30 PM
Subject: Ambien vs. Ultram for RLS?

I have been taking 5mg of Ambien nightly for about 3 years to help me fall asleep before I start with PLMD symptoms. I have tried to get off of Ambien but there seems to be no way to fall asleep. I suppose I have become addicted and I'm frustrated about that.

I have been reading a lot on your posts to individuals with RLS/PLMD symptoms about Ultram. I know that Ambien is a controlled substance and a hypnotic, but as a pain killer would Ultram be a good substitute to get me off Ambien and still control my PLMD ? Or, could I alternate it with Ambien?

JBS

Medical Reply

Although it is possible that you are becoming dependent upon Ambien, that is a fairly uncommon occurrence. Typically, when dependence occurs, tolerance (a need for a higher dose to get the same effect) also occurs which does not seem to be happening in your case. It is more likely that you need the Ambien to help you sleep due to your PLMD (or other reasons).

Ultram is very good for RLS but not it is not well understood for treating PLM (never really been studied) so I would not recommend its use for PLM. However, if you want to change (and I am not sure you really need to do this), gabapentin would be a better choice.

Sent: Wednesday, May 07, 2008 9:15 AM
Subject: A note on Night Time Leg Calm

I just wanted to send you a note about Night Time Leg Calm. I read the comments about it in your site and I wanted to be able to respond with my experience. I too doubted that this product would work. But I can't even describe how amazed I am by this thing. I have had RLS since 2001, and according to my neurologist, one of the most severe cases he has ever seen. (Over 500 movements during a 5.5 hour sleep study).

I ended up taking prescription medication and from the time I started my dosage had to be increased eight times in order to control the movements. The side effects, however, made me sleepy and tired during the day. I was looking for some new RLS literature on Amazon when I found this product. I didn't think it would work, but I decided to give it a try. I was almost speechless when it helped almost immediately.

I have only been using it for 30+ days, but so far I have been waking up before my alarm, I don't feel the need to nap during the day and have had a noticeable increase in energy. It has been so long since I have had a good night's sleep, that this is absolutely amazing. This product is available at Amazon.com in a two pack, but I later found it for those who want to try it at CVS.com (not in stores yet) in a single pack. The company offers a money back guarantee so you can't go wrong. They believe in it strongly enough that they offer your shipping back (I did my research before buying).

If it sounds like I am selling people on this product, well, maybe I am. I love it!

Mary G W

Medical Reply

We will post your experience with this product for others to share.

It does not sound as if you have RLS (which are symptoms that occur while you are awake) but rather PLMS (the leg kicks that occur predominantly during sleep).

Sent: Thursday, May 08, 2008 11:56 AM
Subject: Dosages and other questions

Thanks for your great site, it's been a help to me for many years. I need your advice on a number of issues please. I'm a 6'3" 56 year old man, weighing 250 pounds.
My current dosage of ropinirole (Requip in the US, Repreve in Australia where I come from) is 2 mg at noon, 2 mg at 5 pm and 2 mg at 10 pm.
Lately my RLS kicks in (literally) at about 3.30 am. So sleep - as with everyone who visits this site - is an issue.

My questions then are:
1. Would you suggest a change of dosage or a timing change?
2. A drug holiday, whilst probably being hellish, might work, how long does it take for the Requip to leave the system and come back effectively when recommenced?
3. I might be able to import Sifrol (Mirapex) into Australia from Canada, could I use that to fill up the drug holiday gap and what would the dosage be (I know it's 4 times as strong)
4. What's the maximum daily dosage for ropinirole, is it dangerous and do you think my current symptoms indicate augmentation or rebound?

Marty K.
Coolum Beach
Queensland Australia

Medical Reply

Your best bet is to increase your 10 pm dose (I assume this is just before going to bed) perhaps to 3 mg so that it will last longer through the night. Requip should not be increased beyond 4 mg for any individual dose but multiple doses are often necessary for more severe cases such as your case.

I would not recommend a drug holiday as it might only provide temporary benefit which certainly does not warrant the very bad symptoms that result from withdrawing the drug. Mirapex works on the same receptors as Requip so it would not make sense to change drugs (except that Mirapex has a mildly longer half-life so it may last a little longer per dose).

It does not sound like you are experiencing augmentation but rebound is likely (the last dose simply is not lasting long enough to cover your 3 am symptoms).

Sent: Sunday, May 11, 2008 12:35 AM
Subject: Airline Pilot with RLS needs help

Like so many others I find myself writing you for some advice. To give you some background information, about 10 years ago I blew out my lower back L5-S1 while pulling my 40 lb.. flight bag out of its holder. I’ve had several surgeries to fix this problem which culminated with the fusion of my L5-S1. I’ve also had disc bulges removed at the C2-3 C3-4 levels with good results. After my last back surgery in November of 07 I found that the RLS (I grew up with) became unbearable especially after I came off of the pain medication prescribed for the fusion.

My doctors sent me for a series of sleep studies that confirmed severe PLMD and RLS – even more so they found out that I had life threatening sleep apnea (shock!). I’m 41 5’9” 165 lb. and in good physical condition ( I exercise regularly). The CPAP machine would not work because of the severity of the OSA (obstructive sleep apnea) so I had another surgery called Maxilliomandibular Advancement, basically a doctor cut my face loose below the nose and re-bolted it ½ inch forward. This cured the Sleep apnea and reduced the PLMD, however I still have severe RLS.

Now here is the real problem, I’m an airline pilot and although Requip and other RLS drugs work wonderfully for me, the FAA (Federal Aviation Administration) will not allow me to fly and take Requip here is an excerpt from an FAA memo to it’s medical examiners: (that Permax /pergolide), a medication that is used as an adjunct to levodopa carbidopa in patients with Parkinsonism, has been found to cause sudden falling asleep, especially during activities and can occur while driving a motor vehicle. Therefore, we no longer allow medical certification of airmen taking this medication.

This is much the same warning that came with the Parkinson's disease medications Mirapex (pramipexole) and Requip (ropinirole), which are also unacceptable now for medical certification as a result of this warning. We have also decided to deny all those airmen who are currently taking this medication). I’m not sure where to turn. I’ve met with several doctors but to no avail. On the 23 of May I’m meeting with a neurologist that specializes in neurological movement disorders with hope that they may be able to help.

I’ve tried all kinds of internet remedies and none have helped that includes cutting out chocolate and caffeine and other things that have been recommended by various RLS web sites. Of course I’ve read your site and many others but still really don’t know where to turn. The FAA will not give me guidance so I’ve got to figure this one out on my own. Vicodin works well also but cannot be taken within a 24 hour period before flight.

Bret

Medical Reply

It is unfortunate that the FAA has restrictions on the use of Mirapex and Requip. These restrictions are somewhat more relevant for the higher doses used for Parkinson's disease as sleepiness occurs very infrequently with the lower doses used for RLS.

However, since you must deal with the FAA restrictions, you will have to look for other medications. Although Vicodin (and I am sure that includes all the other opioids) is restricted, you should check whether tramadol is also restricted. Tramadol (Ultram) is not really an opioid but some consider it to be in this category which may make the FAA restrict its use.

Another choice would be gabapentin or Lyrica which tend to help RLS quite well for most. However, they also have a potential for sleepiness, so you may still have trouble with the FAA.

Let me know if any of these suggestions are helpful. If not, we will have to go back to the drawing board.

A Reply from Bret

Sent: Wednesday, May 14, 2008 12:41 PM
Subject: I've been able to determine . . .

I found a web site for pilots who have lost their medical approvals to fly and have learned that I am going to have to hire specialists to help me through the process or I will not get my medical back. In my case, everything is going to by a maybe except the specified banned substances. In the past the FAA has allowed these medications on a case by case basis at very low dosages.

Restless Leg Syndrome - Some commonly prescribed drugs such as Neurontin (Gabapentin) are not approved by the FAA. The following may be approved by the FAA on a case by case basis only:

Atamet
Parlodel
Sinemet


My understanding is that these drugs pose a greater risk of Augmentation.

Bret

Medical Reply

Atamet and Sinemet are the same drugs (carbidopa/levodopa). There is a huge risk of augmentation but only if taken on a daily basis. If you use these drugs on an intermittent basis, there is no concern about augmentation. Therefore, that might be the answer for you.

Parlodel is used for RLS very occasionally. It does work well but as it is an ergot derived drug, it has a risk of causing damage to your heart valves.

A Reply from Bret

Sent: Thursday, May 15, 2008 4:52 AM
Subject: RE: I've been able to determine . . .


Well, I’ll keep looking for other alternatives. I’m meeting with a vascular surgeon in June to see if I might have something going on there that might be causing this problem and I’m meeting with a new neurologist so hopefully I’ll learn something new that will help me. I have RLS every night fairly sever (both arms and legs) and to the level that I want to scream.

Last night I took Requip and it took about 3 hours to work but then slept from 12am to 6am, which is not bad for me. I guess the question is will the FAA let me take Requip for the two days that I’m home and then take carbidopa/levodopa when I’m at work – and would taking these drugs 5 days a week risk augmentation?

Bret

Medical Reply

I would not waste your time going to see the vascular surgeon. Although there is one study (a very poor one that has never been duplicated) that showed improvement with varicose vein surgery for RLS, this disorder is not a vascular one.

Seeing a neurologist may be helpful, but only if he is very knowledgeable about RLS. Otherwise, again, you will be wasting your time.

As long as your dopamine drug use is intermittent, even at 5 days per week you should not experience augmentation (letting your dopamine receptors rest prevents that problem).

Sent: Wednesday, May 14, 2008 1:58 PM
Subject: RLS medications and weight gain?

I took Requip till it stopped working. Started with Mirapex and having to take more for it to work but doing so I am experiencing swelling to my hands and feet and my legs are starting to tingle now. It was now and then only but it increases daily . I have also gained so much weight. I have hypothyroid. I haven't changed my diet so what is the deal. Going on 52 years of age and have gained at least 50 pounds in the last 2 years.

Jane

Medical Reply

Although some edema (swelling of ankles, feet, legs) may occur with dopamine agonists like Requip and Mirapex, the incredible weight gain that you are experiencing is much less likely to come from these drugs. I would look for other reasons including your hypothyroid problem.

If Mirapex is not working so well and you are needing higher and higher doses, it may be time to consider a change to painkillers or anticonvulsant drugs (gabapentin or Lyrica).

Sent: Wednesday, May 14, 2008 1:29 PM
Subject: RLS help?

You have helped me before, and once again I come to you seeking advice. I am female aged 59 years.

My GP is very helpful and he has been more than willing to cooperate and to take heed of the Mayo Algorithm and your advice. On his referral I have seen a neurologist twice, and the neurologist on his own admission has no great experience of RLS. I think the GP referred me for 'approval' in the regular prescription of my codeine and zolpidem. The neurologist discharged me back to my GP saying that the regime was fine and that I appeared to have researched the condition thoroughly. Both have copies of the algorithm. I use an RLS forum which is wonderful and in which you are continually appreciated by the members.

Please excuse that this is going to be a long letter but I wish to make my history clear. I have had RLS for 30 years and been on medication for about 18 months. Prior to this my RLS had progressed to nearly 24/7.

My medication is:
2 mg Requip which I start at 9am and spread throughout the day. (I have been on this for 18 months)
Codeine 2 x 15mg which I take at bedtime. (I have been on this 5 months)
Zolpidem 5 mg. Sometimes I take one at bedtime and another during the night. Other times I take the 10 mg at bedtime. (I have been on this 5 months)

Generally (from my daily dose of 2 mg Requip), I take .25 mg at 9 am, .25 mg at 1pm, .5 mg at 6.30 pm, .5 mg at 10 pm. The last .5mg I may take part of it during the night, thus not quite taking the full 2 mg, trying to avoid augmentation. The Requip has never entirely taken away the RLS symptoms, during the day I still get some symptoms, which I try to walk off. (I work at a desk). The same applies during the evenings. Some nights with my bedtime medication of .5 mg Requip, 30 mg codeine, I am not too bad, may have to do a little walking around the bedroom, but generally after I take the zolpidem I get some sleep, about 5 hours.

10 days ago I had a spell of very poor sleep, (which still happens sometimes). I was operating on about 3 hours sleep per night, then after about 6 nights of this came a night of no sleep at all. I had taken an extra Requip, I had taken 10mg zolpidem, and then I took another .5 zolpidem in the middle of the night. Still no sleep. By 6am I was exhausted. I had been bouncing off the walls with tiredness and still no relief from symptoms and no sleep. At 7am my legs calmed. I took a 4th .5mg zolpidem and got 3 hours sleep.

For the first time in 9 years, I did not go to work, I took two days off work I felt so exhausted, fortunately this all happened on a Thursday and Friday, so led me onto the weekend giving me 4 days off work. My symptoms can be both legs and also my arms. The prominent limbs are my right leg and on occasion my right arm. At present I feel the symptoms slightly but constantly, in my right leg, even with my Requip. For 4 days constantly it feels like my leg is heavy with a slight burning feeling, and feels as though it is about to burst into full symptoms. At bedtime with the extra help of codeine 30 mg and zolpidem 5 mg or 10 mg I can usually get to sleep for about 5 hours.

This is my history, and thank you for bearing with me so far. Over the past approximately 6 weeks I have been feeling nauseated and as though I have indigestion. I have been buying over the counter Zantac (ranitidine) and this helps daily with the nausea. I wonder if this Zantac would have an adverse affect on my Requip. Could the Zantac be the cause of my Requip perhaps not working as well, or just in itself aggravating my condition.

My doctor gave me the codeine to supplement the Requip because I did not want to increase my Requip i.e. the risk of augmentation. Could you advise me of any anti-nausea medication I could take, over the counter, or otherwise, that would not affect my RLS.

Betty

Medical Reply

It is unlikely that the Zantac is interfering with the Requip at all. All the OTC anti-nausea medication worsens RLS (as does almost all the prescription ones). However, Kytril and Zofran are great for nausea in RLS patients but may be very expensive if not fully covered by insurance.

Codeine is not the best RLS opioid. If you have not already tried them, more potent opioids (like methadone, oxycodone) would likely work much better. You might want to consider gabapentin or Lyrica in the evening as they may help your RLS and insomnia.

Sent: Saturday, May 17, 2008 7:32 AM
Subject: My cure for RLS

I’ve had RLS Since I was 15 years old. I’m now 48. I would take aspirin before I went to bed. Walk during the middle of the night. Exercise my legs. Anything. Always kicking my husband out of bed without realizing it. I also got leg cramps during the day. I had them so often when I was young that I taught myself how to swim while all the muscles in my legs would seize up.

I work in a warehouse and I’m on concrete every day for several hours, so not only did I have RLS and Charlie horses, my feet would tingle something terrible. RLS was not common knowledge at the time. So I just suffered through. I would take Potassium and eat as many bananas as I could. It would help some with the Charlie horses. Not the RLS.

Then one day I was in a local Walmart store, and happened to start talking to another woman there about these issues. She suggested I start taking calcium and vitamin E. Well I would try anything by that time. IT WORKED. Within a couple of months the issues were almost all gone. I continue with the vitamins for several years and the symptoms all but disappeared. Then I stopped taking all the vitamins. It’s been about 4 years since then, and I’m just starting to get a few Charlie horses. I guess I’ll start taking my vitamins again.

It worked for me. Isn’t it worth a try to see if it will work for others?

Medical Reply

We will post your email for others to see. Unfortunately, very little research has been done of the effect of vitamins and minerals on RLS so we do not have much real scientific evidence on this issue. Therefore, we do rely on anecdotal evidence such as yours even though what may work for one person may not help the majority of RLS sufferers.

Sent: Sunday, May 18, 2008 6:29 AM
Subject: RLS

I have been taking Mirapex for treatment of RLS for two years now... my dosage is .250 mg a few hours before bedtime. This has increased from .125 because that dosage no longer worked. I also take Zoloft for anxiety. The last few days I have experienced what I consider to be an allergic reaction to the drug; itching and some hives on my lower legs only. I assume it is the Mirapex since starting this drug I have gained 40 pounds. I have no energy and find I am in somewhat of a depressed state.

After reading some of the Mirapex horror stories I have decided I'd like to take myself off this drug.. but am reluctant to do so. if I decrease my dosage back to .125 and then cut to a single pill every other day ... will this work... ? As awful as the RLS is,  I'd like to try to get my life back...

Carol R.

Medical Reply

It is difficult to say whether all (or any) of your adverse reactions are due to Mirapex. The only way to know for sure would be to discontinue the drug. You could reduce the drug to .125 mg but your RLS symptoms will likely significantly increase (and taking it every other day will definitely give you a terrible day every other day). An alternative would be to change to Requip, which is similar but different enough that it may or may not work better.

If you do want to discontinue the Mirapex for a trial of a couple of weeks, you will need an opioid (like Vicodin) to take its place. If that works much better you may consider staying on the opioids or changing to gabapentin or Lyrica.

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