Patient letters on RLS symptoms and remedies- Page 31

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

Sent: Monday, October 30, 2000 4:33 AM
Subject: Requip and pain killers

I wrote to you some time ago for advice as to what medication would be the best to try and have finally seen a consultant neurologist, who has now agreed to start me on Requip - which is great. However, I've been taking dihydrocodeine every day for nearly a year now and my dosage has risen to around 350mg a day. I had a sleep study whilst in hospital recently and managed an hour and a half sleep on 300 mg taken between late evening and 6 am. 

I haven't started on the Requip yet, but am concerned that my doctors will make me drop the dihydrocodeine below 300 mg again as they did when they tried me on Cabaser (no help at all - and made me violently sick on several occasions). Dropping below 300mg was a complete nightmare for about 2 months when the Cabaser was tried. My hair started to fall out in patches due to the distress that the relentless 24 hour RLS was putting me through.

My questions are :

(1) Do high doses of dihydrocodeine interact with Requip and stop it from working, and if so what else could be done to help me through?
(2) Would I be better off on a benzodiazepine in the short term until my maintenance dose of Requip has been reached?

I do take regular exercise, and have just turned the garage into a gym, but this only helps whilst doing the exercise and for about 20 minutes after. Any other comments or suggestions would be greatly appreciated. Thanks for all your help.

Joe F.,
Manchester, England.

Medical Reply

Codeine or its cousin dihydrocodeine do not chemically interact in any way with Requip. They should both work well together. Once you are the right dose of Requip, you should not need the narcotic medication, so you should be able to slowly wean yourself off it (at the dose you are taking, you may be somewhat addicted, so it would be better to gradually taper your dose).

You could use benzodiazepines in the interim to help you sleep while titrating up on the Requip, but that will likely only complicate matters and make it more difficult to figure out what is causing side effects, etc. (if any).

Exercise generally only provides temporary relief from RLS.

Sent: Monday, October 30, 2000 1:11 PM
Subject: HELP for body twitches!!

I had spent the last year and a half complaining to my doctor about being constantly exhausted. After recently moving in with my partner, he told me that I keep him up all night because every 5 to 15 seconds for most the night I have "full body twitches". I told my doctor about this, and without sending me for a sleep test, diagnosed me with PLMD (But no RLS). She prescribed Amitriptyline, which after everything I have read makes me nervous.

I also have episodes during the day where I twitch also, would this be related to the PLMD?

Any insight you might be able to provide would be appreciated. Both my partner and I are at wits end from lack of sleep.

Stacie H.,
Fairfax, VA

Medical Reply

It does sound as if you have PLMD, which can occur without RLS (in about 35% of PLMD cases). You need to get a sleep study, and if positive (over 10-15 PLM arousals per hour), then you will need appropriate therapy.

Amitriptyline has no role in PLMD and in fact may worsen it. Sedative medication (Ambien, Xanax) may be helpful to prevent the arousals from the PLM's or better yet, Mirapex or Requip to eliminate or reduce the PLM's in the first place.

Sent: Monday, October 30, 2000 8:18 PM
Subject: Starting my search for answers for my leg pain

I've had leg pain since I was a child. I can remember my mom getting up in the middle of the night and rubbing my legs for me because they hurt so bad. The doctors all called it "growing pains." As an adult I just endured it as I realized that it wasn't growing pains and doctors have been unable to offer me any advice. I recently mentioned it to my OBGYN and he did acknowledge that RLS is real but didn't offer anything as treatment.

I know that I have RLS or what I call "jumpy legs" because I have definately experienced not being able to keep my legs still. But, for me most of the time it is just an intense aching in my feet and calves and doesn't seem so much the need to move my legs (although many times I get out of bed and stretch as hard as I can to try to get relief). Most always the pain is below the knee (leg and foot)... but not in the joint. It does seem to occur more frequently when the weather is damp. Especially during the season when it's too cool for air conditioning and too warm for heat. I will also get it if I've been on my feet all day. Now most every night

I am taking four Advil before I go to bed and rubbing Sport Cream on my legs to get to sleep. I usually wake up at 2:00 and have to repeat the process and wait 20 minutes before I can get back to sleep. This is starting to get old and I would just love being able to sleep through the night.

Thanks for any help you can give me!
Gennie

Medical Reply

It does sound like you have RLS. Treatment with Mirapex or Requip would likely take care of your RLS symptoms and allow you to lead a normal life. The trouble may be finding a doctor who is knowledgeable enough about RLS and its treatment to give you this incredible therapy for your problem.

Sent: Sunday, November 05, 2000 5:39 AM
Subject: increasing Permax and decreasing Rivotril (clonazepam)

About three weeks ago I wrote you that I took Rivotril with 0,75 mg. My intention was to start with Permax. I was told that I had to reduce the Rivotril to 0 mg and increase Permax to about 0,25 mg at the same time. At October 14th I started with the schedule.

At this moment, November 4th, I take 1 pill of 0,25 mg Permax and I do not take Rivotril anymore. But I still have creepy,crawly feeling legs, mostly at night. That is why I cannot fall a sleep. The difference with 3 weeks ago is that I can stay in my warm bed. There is no need to walk during the whole night.

My question is, how to continue Permax?

With regards,
John

Medical Reply

I would continue the Permax at the same dose, which is already in the high range for an RLS patient. There might however, still be some benefit trying a higher dose to see if you can eliminate the unpleasant leg sensations. I would stay away from Rivotril (clonazepam) in the future, but other non-benzodiazepines such as Ambien or Imovane (if available in your country) may be very helpful to put you to sleep. Taking regular drug holidays (one weekend off every 2 weeks or so) may also help to avoid tolerance.

You may also try a small dose of codeine, Darvon, Ultram or other pain medication on an intermittent basis (maybe even alternating with the sleeping pill) to further reduce the RLS discomfort so that you may not even need to increase the Permax.

Sent: Monday, November 06, 2000 6:03 PM
Subject: RLS and pregnancy

I think I may have RLS. I have been up the last few nights with leg twitches and jumpy legs and all sorts of problems. After visiting your site, I realized (based on the symptoms listed and the letters from other people) that maybe I have RLS.

I remember when I was in school and I couldn't sit still because my legs wouldn't let me. It wasn't that I didn't want to, I just couldn't. Someone told me it was probably dry skin and I tried lotion, but the relief was only minor. When I started working, I sat quite a bit and found that my legs didn't care for that. Now, as an adult, I am a stay-at-home mom and find it hard to sleep due to leg movements. The other day my husband said I woke him up because I kept kicking him and he couldn't believe that I was sound asleep.

Right now, I can't do much about it. My doctor said just to keep myself hydrated, drink lots of milk and that was all for now. I also found from your site and others that it may help if I move a lot during the day, going up and down lots of stairs, whatever type of "exercise" I can get, will probably help. We'll see. Last night, instead of sleeping, I was on the computer looking up twitchy legs and found out about this syndrome. Of course I was dancing in the chair the whole time. Even now, I can't keep my legs still.

Being pregnant makes it harder. I need more sleep than usual and I am SO TIRED!!! And there's nothing I can do to change my sleeping times. Naps are hard to come by and night time I'm too busy twitching. Hopefully, I can find a solution that will work for me.

Thank you for having such an informative site,
KAH

Medical Reply

It does sound as if you have both RLS (the unpleasant sensations in your legs when you sit or go to bed) and PLMD (the leg jerking movements while asleep). There are lots of medications to help RLS/PLMD, but if you are currently pregnant, then only a few of the medications can be used (check out our RLS Treatment Page for more information on which drugs can be used during pregnancy).

Sent: Tuesday, November 07, 2000 4:42 AM
Subject: Insomnia and Mirapex

Since three weeks I take 0.25 mg of Mirapex before going to bed. My RLS symptoms wane, but after a couple of hours I wake up and it takes hours to fall asleep again. Do you think a change to Requip might resolve my insomnia? thank you very much for your answer, Renee from the Netherlands

Medical Reply

It is possible. Although sleepiness can be a problem with higher doses of Mirapex, some experience insomnia. Requip might work as well, but not have the same side effect profile.

Sent: Wednesday, November 08, 2000 3:25 PM
Subject: Klonopin and RLS

I have a question which would more appropriately be addressed to my mother's doctor, if she would see someone who specializes in RLS. If you can, please provide me the information I need so that I might convince her to see someone else besides her primary care physician (who professes to know nothing about RLS).

My mother has been taking Klonopin for years (along with Ambien) to treat her disease, but it is no longer helping her at all. Her doctor agreed to help her find another medication but says she must slowly discontinue Klonopin before she can prescribe any other treatment. My concern is that during this process her RLS and sleeplessness will worsen.

Are there any treatments that one can start while in the process of going off Klonopin? Be assured that I don't intend to "doctor" her myself, but perhaps I can convince her to see a specialist or provide the correct information to her own doctor. Please help - my mother is 79 years old and suffers badly from RLS daily, as well as sleeplessness.

Thank you for any assistance you can offer,
Susan M.

Medical Reply

You mother should be put on Mirapex or Requip. Those medications have an excellent chance of alleviating her RLS symptoms. Once on the correct dose of Mirapex or Requip (the dose that eliminates her RLS complaints), it should be easy to wean her off her Klonopin. It sounds as if she is becoming tolerant of Klonopin, so it would be a good idea to gradually get her off the drug.

Sent: Thursday, November 09, 2000 9:42 PM
Subject: Celexa and RLS

I would like to know if the antidepressant drug Celexa makes RLS worse. I know all the others I have tried do, so I am wondering if Celexa is in the same category. My doctor says it is fairly new and is sometimes used to treat pain also. I look forward to your response.

Susan J.

Medical Reply

Celexa is one of the newer SSRI type antidepressant medications. This class may sometimes even help RLS, but more frequently the antidepressant medications (even all the SSRI ones) have a greater potential to worsen RLS. The only way that you can tell how it will work for you is to actually try it, but be careful and watch out for worsening RLS.

Sent: Thursday, November 09, 2000 12:50 PM
Subject: a couple of questions

I've send you this mail before from the office, but I think something has gone wrong.

I live in Holland, so excuse me if my English is not perfect. I am 40 years old. Six weeks ago, from one day to the next, I got pretty severe RLS in my legs and arms. I have never experienced any RLS-trouble before in my life, not even during my pregnancies. Symptoms are present now night and day.

Since I am very anxious about my future, I'd be grateful if you could answer my questions.

1. Do you have an explanation for the fact that my RLS-symptoms came up so suddenly, whereas I never experienced any before?
2. Can I hope for temporary regressions or is my case 'too bad'?
3. In my job (that I've always loved) I need to sit all day long. This is very difficult for me. Do you think I can continue doing this job until I retire (i.e. for another 25 years)?
4. My ferritin level is 22, my hemoglobin 8,8. Can I expect any improvement from taking iron pills? How long does it take before I can say if they do something for me or not?

Thank you very much for your answer,
Saskia E. from Holland

Medical Reply

It is somewhat unusual to develop RLS so suddenly (except during pregnancy or due to medication that may worsen RLS). I would like to hear more about your symptoms to see whether or not you really have RLS.

If you do have RLS, spontaneous remissions can occur, but are not common. There are lots of medical treatment (Mirapex for instance) that should help you do your job and live a normal life without RLS discomfort.

A ferritin level of 22 may be responsible for RLS (any level under 45 should be treated) and iron therapy may alleviate the RLS symptoms, so it may be worthwhile to start iron therapy (under the supervision of your doctor).

A Reply from Saskia E.

Sent: Saturday, November 11, 2000 9:40 AM
Subject: Re: a couple of questions

Thank you very much for your quick and reassuring answer. Your site is absolutely fantastic!

You would like to hear more about my symptoms to see whether or not I really have RLS. Well, half a minute or so after I sit or lay down, both my legs and sometimes my arms start to 'move inside'. It's as if there are crawling some snakes or worms through my muscles. When I start to walk or move these feelings are completely gone.

My father has this too. I'm not pregnant and I don't take any other medication, except inhaled corticosteroids for asthma.

My family doctor and the Dutch Organization for RLS patients told me too that it is very unusual to develop RLS so suddenly as I did. Could it be that, for some reason, my body ran out of iron' in a short period and reacted with RLS? On my request, my doctor already prescribed me iron-pills. She told me it takes about two months to raise my ferritin-level from 22 to 40 or 50. If these pills help me, when will I start to notice some effect? She told me too that a ferritin level of 22 is pretty normal for a woman. Is that true?

Saskia E. from Holland

Medical Reply

Your symptoms describe RLS very well and I think that we can confirm that your diagnosis of RLS is quite reasonable. Although it is unusual to get RLS so suddenly, it certainly does occur, and you may not yet be aware of the cause of this sudden onset. It could be due to some food your are eating, change in your body hormones, etc. There are likely many other possibilities that we may only know in the future.

Women who are still menstruating lose iron monthly and tend to have lower ferritin levels than others. This does not mean that it is really normal. For RLS, you doctor is correct in shooting for a ferritin level of over 50. You should see some gradual improvement over the next few months if the low ferritin is a factor in your RLS (unfortunately, many RLS sufferers with low ferritin do not improve with iron therapy).

A Reply from Saskia

Sent: Tuesday, November 14, 2000 1:19 AM
Subject: Re: a couple of questions

Thanks again for your answer. Could I ask you one last question?

In my last letter I told you my doctor had put me on iron therapy, because my ferritine level is 22. I take 3 tablets of 200 mg each day. After only 4 days something unbelievable happened: my nightly RLS-sympoms diminished so much that I could sleep very well without any medication. Now, a week later, I still have only very minor RLS-symptoms at night.

This improvement is too big to be just a case of 'wishful thinking'. Strange enough in the daytime not much has changed. It is still difficult for me to stay seated at the office all day long. Especially in the afternoon my legs start to burn and 'want to run'.

Do you think the nightly improvement of my RLS can be a reslult of the iron pills I'm taking? Or is this impossible after such a short time?

Saskia E. from Holland

Medical Reply

Usually it takes the iron therapy several weeks (or longer) to help, but it is certainly possible that a few days of treatment could result in improvement. We do not fully understand the role of iron in RLS yet. There is a reasonable chance that with further iron treatment that your daytime RLS might even improve.

Sent: Friday, November 10, 2000 8:57 PM
Subject: Restless Leg Syndrome (I think)

Having read numerous entries of symptoms on your recently discovered web page, I'm not convinced I have RLS by your definitions, but merely an annoyance.

I don't have pain to speak of, just an annoying need to constantly exercise one or both ankles. The front ball of my foot remains on the ground while the heel bounces the leg. I rotate between legs because the frequency of "bounce" is usually not the same in each leg so the resonance in the rest of my body is too noticeable. (Only occasionally does the frequency coincide with music to which I may be listening) The bounce continues when my legs are crossed, sometimes on the suspended foot, other times on the grounded one. The suspended foot may bounce vertically or swing side to side with the ankle as the pivot point.

The relief I feel when the compelled exercise occurs is like that of stretching a lower leg muscle or joint that has been too long idle, although I may have just sat down from an extended walk. Rarely can I sit without feeling this compulsion. Cruise control helps to allow the motion while driving an automobile.

My sleep is generally unaffected except, while falling asleep I may run one or the other ankle, or, if my wife is already asleep or not in bed, I may deliberately originate the bounce in one of my hips. It does not last long and I sleep soundly. There is no compulsion that affects my walking or other leg/foot activity. Concentration will let me control the compulsion as when I am sitting close to another person, and suppressing the bounce only occasionally creates discomfort in my calf.

I've only become aware of this in me in the last year, yet I've noticed it in many other people with whom I have contact. The motion predates my medications Elavil and Neurontin for diabetic neuropathy, and Accupril for BP. I consume no alcohol

Your comments and suggestions are requested,
Thomas L., Westlake, OH

Medical Reply

You are describing RLS, but luckily for you, so far it seems like you have a mild case. The discomfort of RLS is often very hard for the RLS sufferer to describe. Most do not refer to it as a pain, but rather an indescribable unpleasant sensation. It is worse at rest and improves with activity or even with mental activity. It may worsen as you get older.

Elavil usually worsens the RLS problems, but Neurontin may help.

Sent: Saturday, November 11, 2000 8:01 PM
Subject: Permax and opiates

I wrote to you a while ago about my partner's RLS. He is a former addict and had been on methadone for years. After being off methadone for a couple of months we found a doctor who put him on first oxycodone and then morphine sulphate for the RLS. He has a referral to a neurologist but not until January. In the meantime he is worried about an escalating tolerance and associated problems. He has gone from 30mg to 60-80mg in about a month. He is ready to try non-opiate medications.

In Australia we don't have Mirapex or Requip yet (I think they are having a trial of it for Parkinson's), so it will have to be Permax and maybe Ultram. Is it OK for him to try Permax while he is on this dose of morphine and then taper off the morphine? Would he then maybe be able, after a decent period, take Ultram as well if needed or for drug holidays?

Let's hope that the doctor will prescribe the Permax and that it works as we don't have too many options here. What dose of Permax should he start on. His RLS is quite severe and he gets it in his arms and shoulders as well. He has terrible PLMS too.

Colleen

Medical Reply

He can certainly be started on Permax. The starting dose is 0.05 mg with doses increasing by .05 mg if needed every 5 days (see our RLS Treatment Page for more details). He should be able to slowly wean off his narcotics when on the right dose of Permax. Ultram can be used instead of narcotics, but it still has an addiction potential, especially with someone who gets easily addicted.

A Reply from Colleen

Sent: Tuesday, November 14, 2000 4:43 PM
Subject: Re: Permax and opiates

How will he know if he is on the right dose of Permax if he is still on this dose of MS Contin, as the legs don't bother him at all on this dose.? Should he increase the Permax and decrease the MS Contin at the same time. He has quite severe RLS, what sort of does would you expect that he might have to work up to? Is Permax OK for hepatic patients?

Colleen

Medical Reply

There is no formula for Permax as each patient is different. Most RLS sufferers notice improvement with the first one or two of the .05 mg pills (taken as one dose). This can vary and some may need 5 or more of the .05 mg tablets per dose to get relief.

The dose of MS Contin has to be decreased slowly or you could change to a less potent narcotic which may be easier to taper. Often, it unfortunately takes significant trial and error to accomplish the right dose while tapering a narcotic.

There should be no problem with mild hepatic problems, but you would check with your doctor before taking any drug if liver problems are present.

Sent: Monday, November 13, 2000 4:46 AM
Subject: RLS: precursor to Parkinson's Disease?

I have RLS that appeared after fourth spinal surgery at the S1 level and/or bacterial pneumonia that lowered hemaglobin to 6 !! The doctors said this was due to septicemia; the last surgery & pneumonia occurred within 2 weeks of each other, so I'm curious if low iron was causative agent, or neurogenic changes, as I do have permanent left leg sensory neurological deficit.

I am now on Mirapex, Baclofen,& Topamax; still have HORRENDOUS leg cramps, both legs, that wake me up crying & cause me to go leaping out of bed. My toes knot so fiercely that I cant get a finger under them to straighten them out. I am seeing a neuropsychiatrist, but can you offer any other suggestions?

Also, I've heard RLS/PLMD are considered precursors to Parkinson's disease.  Is that true or false? I did come up with arthritis after the pneumonia which the Rheumatlogists says is likely offshoot from major bacterial sepsis, so figure anything's possible. This is enough to drive a person nuts! I'm awakened 2-4 times per night!!!

Yawn.... thank you for anything you can offer,
Ann P.

Medical Reply

Trauma to the spine (and especially spine surgery) seems to be a very common trigger of RLS. The low blood count may not have been related to low iron levels in your case, so that may not even be a factor. RLS/PLMD does not lead to Parkinson's disease, so you do not have to worry about that.

Baclofen rarely helps RLS. I have not heard of Topamax helping RLS (are you on this anti-seizure drug for other reasons?).

Your leg cramps that wake you up at night do not seem related to RLS, do you have RLS in addition to these symptoms?

Sent: Monday, November 13, 2000 1:10 PM
Subject: RLS without worsening in bed?

I am trying to find information on my symptoms of jumpy and uncomfortable legs . This occurs when I am drowsy and warm and siting up . This normally occurs when I am taking a bus or car ride at night or in the early evening. I also very occasionally experience leg twitches in bed but these are very brief. In general I find that lying down standing up or sleeping ease the symptoms completely. I also experience these sensations in my arms from time to time.

This may sound minor but I have to commute home by bus for an hour every night and these journeys are becoming a nightmare I am often tempted to get of the bus to stretch a very time consuming and expensive option. My brother also suffers from this condition. I am 24 years old and I have suffered from this all my life. My symptoms sound similar to RLS are they some type of offshoot.?

I hope you can help me at least to know what I am suffering from. Incidentally I am continuously tired although this may be more from lack of sleep than a sleep disorder.

Thank you,
Dan

Medical Reply

It does sound as if you have RLS, although it is a little different than the average RLS sufferer. RLS is worse in the evening and better in the morning, just as in your case. It is almost always associated with a feeling of wanting to move the affected limb to get relief. The only thing that is different is that RLS is usually worse while sitting (as in your case), but at its peak while in bed. It does get better standing up for most.

Medication such as Mirapex may be helpful if the symptoms are bothersome enough to warrant it (such as your commuting trips, which are a common complaint of RLS patients).

Sent: Tuesday, November 14, 2000 11:02 AM
Subject: RLS

I am writing about my mother-in-law who is in her mid-seventies. About a year ago she started to complain about a severe 'burning' and 'throbbing' pain in one of her legs and occasional pain in her knee. She also has a shoulder pain that comes and goes and frequently suffers from severe headache at the back of her hear (though this may be stress related).

The symptoms are the same whether she sits, walks or is in bed. She takes sleeping pills but still wakes after several hours with a painful leg. A doctor suggested she try Carbamazepine. She is taking 3 times 100mg and this has improved matters but not cured the pain. Two specialist have suggested she is suffering from RLS and have since looked on the web for a description of this condition. Your site has been extremely helpful.

I am somewhat confused as her symptoms seem to be missing the 'restless' nature of RLS. She does not have jerks and neither does she have the urge to walk about. My question is, despite the lack of these symptoms, is it likely that she is suffering from RLS?

The latest suggestion is to try to increase the Carbamazepine to 500mg per day and if that fails to try in addition Clonazepam (Rivotril) starting at 0.5 mg at night, increasing to 1 mg and then 2 mg.

I would be grateful for your opinion.

Many thanks,
Leslie D.

Medical Reply

Most cases (over 95%) of RLS have the restless component of the disease. This may not be as obvious as you think as it may only manifest as an urge to move the affected limb. Movement of the affected limb should relieve or at least improve the discomfort.

Carbamazepine (Tegretol) is not the best drug for RLS. Mirapex, Requip or the newer cabergoline (available only in Europe and England) work much better for RLS. Clonazepam is not the best sedative for RLS as shorter acting drugs such as Ambien or Xanax work much better to promote sleep (and the shorter acting ones have less of chance to cause daytime sleepiness which is very common with clonazepam).

Sent: Tuesday, November 14, 2000 8:54 PM
Subject: Restless Legs...And Arms????

I need help!!! It all started with a tingly, creepy feeling in my legs almost six months ago. It has since moved to my arms and feet. It not only happens at night and most nights I can sleep through the whole night. I was sent to an Internal Medicine Doctor who casually mentioned RLS and prescribed Xanax. I'm living overseas with the military and the Internal Medicine Doctor has since left the area.

I am now experiencing occasional bruising on my arms and legs and sometimes my veins are sore to touch, my upper back also hurts. Could this be a part of RLS? My arms and legs are always aching and at times I feel sharp pains. I'm seeing a General Practitioner Doctor who has told me to continue with the Xanax but has admitted she doesn't know much about RLS. I'm scheduled to see a German Neurologist on November 17.

Any advice or suggestions on what I can ask the Neurologist would be greatly appreciated.

Thank you,
Kimberly T.

Medical Reply

If the creepy feelings in your legs and arms are associated with a almost irresistible compulsion that you must move your limbs and the movement helps or relieves the tingling/creepy sensations, then you have RLS. The best medication for RLS is Mirapex, Requip, or other similar Parkinson's disease drug.

Xanax is good to help you sleep. Regular drug holidays (one weekend every 2 weeks or so) may help prevent addiction/tolerance.

The bruising is not part of RLS (unless you are causing bruises with nighttime PLMD. Aching pains are sometimes associated with RLS/PLMD, but generally not sharp pains.

Sent: Tuesday, November 14, 2000 11:02 AM
Subject: RLS

I am writing about my mother-in-law who is in her mid-seventies.

About a year ago she started to complain about a severe 'burning' and 'throbbing' pain in one of her legs and occasional pain in her knee. She also has a shoulder pain that comes and goes and frequently suffers from severe headache at the back of her hear (though this may be stress related).

The symptoms are the same whether she sits, walks or is in bed. She takes sleeping pills but still wakes after several hours with a painful leg. A doctor suggested she try Carbamazepine. She is taking 3 times 100mg and this has improved matters but not cured the pain.

Two specialist have suggested she is suffering from RLS and have since looked on the web for a description of this condition. Your site has been extremely helpful. I am somewhat confused as her symptoms seem to be missing the 'restless' nature of RLS. She does not have jerks and neither does she have the urge to walk about. My question is, despite the lack of these symptoms, is it likely that she is suffering from RLS?

The latest suggestion is to try to increase the Carbamazepine to 500mg per day and if that fails to try in addition Clonazepam (Rivotril) starting at 0.5 mg at night, increasing to 1 mg and then 2 mg. I would be grateful for your opinion.

Many thanks,
Leslie D.

Medical Reply

Most cases (over 95%) of RLS have the restless component of the disease. This may not be as obvious as you think as it may only manifest as an urge to move the affected limb. Movement of the affected limb should relieve or at least improve the discomfort.

Carbamazepine (Tegretol) is not the best drug for RLS. Mirapex, Requip or the newer cabergoline (available only in Europe and England) work much better for RLS. Clonazepam is not the best sedative for RLS as shorter acting drugs such as Ambien or Xanax work much better to promote sleep (and the shorter acting ones have less of chance to cause daytime sleepiness which is very common with clonazepam).

Sent: Tuesday, November 14, 2000 5:57 PM
Subject: RLS

I have been using Oxycontin 20 mg. for the past year. I take it for two weeks and then take a l week holiday. During the 1 week holiday I take two Ultram at bedtime. I sleep for a couple hours and then am AWAKE with RLS for the rest of the night. Sometimes I will take an Ambien when I awake. I then go to sleep for a few more hours.

Needless to say, I am exhausted and depressed during most of the holiday week. The Oxycontin has been very successful. Can I take a shorter drug holiday? Or do you have any other suggestions?

Again thanks for all your help, and support to us folks with this difficult problem.

Sue Tucson

Medical Reply

Due to the long acting nature of Oxycontin, a longer drug holiday of at least 3-5 days seems reasonable. It might be helpful to try Mirapex or Requip to see if that can decrease or eliminate your need for pain killers.

Sent: Tuesday, November 14, 2000 11:35 PM
Subject: Questions about changing medicines.

This is a wonderful website. You're doing a very kind service to all RLS sufferers.

For the last 11 months I have been taking .05 mg tablets of Premix for my RLS. My doctor prescribed 1 tablet at dinner and one 3 hours later at bedtime. Instead of that I would take 3/4 of a tablet with my dinner and another 1/2 tablet at bedtime. Premix worked well, but there was a side effect of stuffy nose. I also have sinus problems, so sometimes it was incredibly difficult to breath nasally.

So I'm now changing to .125 mg tablets of Mirapex. I haven't started it yet though; I am waiting first for your response. My doctor prescribed 1 tablet at bedtime, could I instead take half a tablet (.125/2) with my dinner, and then the other half at bedtime? Or must the tablet be taken entirely at bedtime?

Also, is it okay to stop Premix and begin Mirapex immediately. Or should I reduce the Premix gradually and start the Mirapex in smaller than the recommended dosages? Also if I experience insomnia, can I take Xanax while on Mirapex? Can I also take allergy medicines (like Claritin, Vancanase AQ) while on Mirapex?

If there is anything else you can suggest or recommend, it would be greatly appreciated. And again thank you for the wonderful site.

Mohammad from Huntington Beach

Medical Reply

In general, Mirapex .125 mg is similar to Permax .05 mg. I often start my RLS patients with 1/2 to one of the .125 Mirapex tablets for each dose (given up to 3 doses per day at 4-8 hours intervals). At the very small doses of Permax that you are taking, it should be easy to substitute Mirapex while stopping Permax immediately (please check with your personal doctor before following my advice).

Xanax or Ambien (the better of the two) can be taken with Mirapex if necessary, but most find that they sleep well with the appropriate dose of Mirapex so they do not need a sleeping pill. Your other medications are fine, except that all antihistamines, including Claritin, tend to worsen RLS.

Sent: Thursday, November 16, 2000 4:07 PM Subject: RLS

I have just recently started taking Carbidopa 25mg/Levodopa 100 mg. (1 tablet) at night before bedtime. Is there any chance this is causing my drowsiness during the day? Some days I notice when I wake up my legs are stiffer than others. Can I up the amount of pills I take at bedtime?

Sharon R.

Medical Reply

It is possible but not very likely that the one Sinemet pill at bedtime would cause sleepiness in the daytime. You could prove whether or not this is the case by stopping the pill for a few days then restarting it and seeing if the daytime sleepiness goes then comes back. You should only increase the amount of Sinemet that you take if your RLS symptoms are not controlled and if your doctor agrees.

There are problems (augmentation and rebound, see our RLS treatment page) with doses of more than 2 Sinemet tablets per day. Mirapex is a much better choice for RLS.

Sent: Saturday, November 18, 2000 8:25 PM
Subject: Cabergoline (Dostinex)

Do you have any experience with Cabergoline for RLS? Any suggestions as to dose, timing, and with or without food? My doctor has just prescribed this for me. I have worn out or been unsuccessful with the other RLS medications including Mirapex and Requip. My doctor has no experience with this drug and could only suggest dosing for me.

Thanks you,
Barbara/61/Oklahoma

Medical Reply

I have not yet used this new drug for RLS, but have gotten a few reports from England that it has worked well on a few RLS sufferers.

Here is the section from our RLS Treatment Page on this drug:

Dostinex/Cabaser(outside the USA) (Cabergoline)

This is the latest of the dopamine D2 agonist medications (like Mirapex and Requip above), but is only approved in the USA for the treatment of hyperprolactinemic disorders, either idiopathic or due to pituitary adenomas.

A recent study in the journal SLEEP (May 2000, Vol 1;23, pages 349-54) showed that this drug worked very well for patients with severe RLS who developed augmentation under levodopa therapy. Nausea was noted due to the drug, but Domperidone (the only anti-nausea drug that is does bother RLS and is not available in the USA) was used to take care of it. The average dose of cabergoline was 2.1 mg, with a range of 1-4 mg.

More on this drug as reports become available and we gain experience her in the USA.

Let us know how you do on the drug.

Sent: Monday, November 20, 2000 2:15 PM
Subject: Restless legs and pain in the legs due to lactic acid?

It took a while for the restless legs to be diagnosed and was made only after I spent a night in a sleep lab (the primary problem being chronic insomnia). Lately though, the urge to spend the night walking has been replaced by pains in my lower legs principally from the knees down.

With my calf muscles working overtime, I decided that the problem was an accumulation of lactic acid since my legs feel like they did in the last 50 yards of a mile race. But I can't seem to find any reference to such a phenomenon. I am I totally wrong?

RNB

Medical Reply

We do not know the cause of RLS, but we can say fairly definitively, that lactic acid accumulation has nothing to do with it.

Sent: Monday, November 20, 2000 9:14 PM
Subject: Do I have RLS and does SAMe help?

Am fascinated by this site and am trying to determine whether the condition I have is indeed RLS. I have had many of the symptoms described here since at least my early thirties (am now 45) except that the tingling/crawling/burning generally subsides (rather than worsens) after I have lain down for awhile in the evening. It is worst while sitting up at night, and has completely eliminated my ability to read or write in the evening (a real loss for me.) It has also made driving any distance in the evening a nightmare. Also, vigorous exercise seems to increase the symptoms. As do warm showers.

The condition was tolerable until I had a severe motorcycle accident about seven years ago, which required skin and muscle grafts, with attendant vascular microsurgery, on my feet ( a free flap was grafted from one foot to the other). It got horrible after the accident, then subsided for several years, but now is on the upswing, and recently has included tingling of the back, sides and shoulders. For several years I was taking SSRI's for non-related depression. Can't say they seem to have worsened the leg condition at the time -- but is their effect cumulative? I now use the natural compound s-adenosyl methionine (SAMe) for mood stabilization. Any known relationship between that compound and RLS?

I have spoken with several doctors about these sensations and no one has had a clue. A top neurosurgeon in San Francisco suggested there might be a lower spinal condition at play. A physiatrist who I see for upper back pain has suggested an MRI of the lower spine. Oh, another symptom: when I bicycle, I lose feeling in my toes and foot. But generally, the problem I have is best described as tingling. I have the urge to move the limb, but also the intense desire to scratch it hard...which does nothing.

Any thoughts?

Medical Reply

If you have a desire to move the affected limb, and this gives you some relief, then there is good chance that you have RLS. SSRI's may worsen RLS. We have no idea of what SAMe does for RLS sufferers.

Sent: Wednesday, November 22, 2000 9:59 PM
Subject: RLS and medications

Maybe you can help sort out my convoluted symptoms and tell me if the medications I am taking are a good idea or not. Please be patient with my story as the RLS part comes in at the end and you may wonder why I am seeking help at this site.

I was a good sleeper (no insomnia, no excessive sleepiness during the day, no leg pains, etc. ) until about 8 years ago when I was 28 and went to graduate school. Then I would have these attacks of yawning and I started falling asleep in classes, while studying, and even while driving (I would pull over when I started to feel sleepy and nap for a short time). I did a sleep study but they didn't find anything and these problems mostly went away after I finished graduate school.

About 10 years ago (before the sleep problems) I started taking Prozac for depression and have been on 60 mg. a day ever since. When I've tried to go off, 3 or 4 times, I got severely depressed with a preoccupation with suicide. I had been depressed since my early teens without treatment and made one serious suicide attempt 12 years ago and was hospitalized for about a month but I have never attempted suicide again and have lead a pretty active, productive, normal life, in spite of the depression.

At about the same time as my hospitalization I had my first heniated disc in my lower back. I have degenerative disc disease and I have had three or four bad episodes since the first. The latest has now been going on for over a year. My MRI now shows two bulging discs, but I am opposed to surgery because, from my research, it seems to be of questionable value and is only really necessary when there is nerve damage, which I don't have.

I can function but am in constant pain. My orthopedist had me on Vicodin for a while, which only helped for about an hour after I took it and kind of knocked me out, but now he has me on 20 mg of Oxycontin every 12 hours. This helps tremendously with the pain. It has made me so glad I didn't opt for the surgery because it really makes everything bearable again - picking up my kids, bending over to unload the dishwasher, sitting in the car, at my desk, etc. However, I am concerned about being on a narcotic long-term and there are other problems, which may or may not be related to the Oxycontin.

About six months ago I started having trouble sleeping and would stay up all night sometimes, writing, organizing closets, and sewing. Prozac seemed to be losing its effectiveness for depression and my moods were swinging wildly. I spent a lot of sleepless nights in a pretty manic state and went back to my psychiatrist describing these symptoms. She gave me a new diagnosis of Bipolar II and prescribed Neurontin (1200 mg a day) for my hypomanic symptoms and kept me on Prozac for depression. She said there was no problem with me continuing to take Oxycontin for back pain. Neurontin seems to be controlling my manic behavior and combined with Prozac, my depression seems to better too and I was sleeping a little more. As I said before, Oxycontin has helped tremendously with the pain but now it seemed to make my mind race so I avoid it at night.

And, in the past few months, I have developed what my orthopedist diagnosed as RLS -- this annoying, irritated pain/numbness feeling in my legs when I try to lay in bed which makes me twitch and want to get up and move around and keeps me awake and miserable. He prescribed amitriptyline for the RLS symptoms but when I checked with my psychiatrist, she recommended upping the Neurontin to 1500 Mg a day (300 more at night) instead. After three weeks, this doesn't seem to be working. If I take Oxycontin at night, I don't have the RLS symptoms but I can't sleep because it seems to bring on hypomania. My mother gave me a couple of Ambien and they worked - made my legs stop bothering me and knocked me out for some good nights of sleep but I am hesitant to add another medication on top of the Prozac, Neurontin, and Oxycontin.

Should I be taking amitriptyline, as my orthopedist prescribed? Would it be safe to add Ambien to this mix? Should I ask my orthopedist to prescribe it? Is there some relationship between my back pain and RLS? Between Oxycontin and RLS? Between long term Prozac use and RLS? The latest thing to be prescribed was Neurontin. Could RLS be a reaction to Neurontin even though Neurontin is supposed to help RLS? Is there something here I am missing?

Any advice you can offer will be greatly appreciated.

Medical Reply

Your symptoms do sound like RLS and most antidepressants tend to make RLS worse, especially amitriptyline. This is definitely the wrong medication for RLS as it commonly worsens RLS to a very significant degree. Prozac may also be worsening your RLS, but you should discuss the use of this drug with your psychiatrist and see how you do when your RLS is treated better. Oxycontin is a potent narcotic that generally alleviates the symptoms of RLS. It should be used carefully to avoid addiction/tolerance. Ambien (or any sedative/sleeping pill) will help RLS. You should discuss using this drug with your psychiatrist.

Neurontin helps many RLS sufferers, but even though you have adequate doses of this medication for most RLS patients, the amitriptyline may be countering the action of this drug (it may work better when you discontinue amitriptyline).

The only thing that you are missing is the best class of drugs to treat RLS which includes Mirapex or Requip. These drugs usually markedly improve RLS.

Sent: Saturday, November 25, 2000 7:31 AM
Subject: Cabergoline for RLS

After just reading a query regarding this treatment, I thought I would give you an update of my experience ( see letter of 21st August) I tried reducing to .25 mg in August but found this not to be fully effective. I then had a bad stomach upset which I at first thought might be related to the cabergoline, so I stopped taking it for a week. All of my RLS symptoms returned and I was again pacing the floor at night as well as being affected in the day.

I started taking it again at .5 mg per day and have continued since. I have not experienced any nausea and have decided that my sickness in September was not related to the cabergoline. Very occasionally I have had the odd feeling in my legs but nothing I can't live with and not at night at all so my sleep has not been disturbed.

In the latest newsletter from the Ekbom support group in England, the recommended dose is between 1 and 4 tablets daily to be taken after food usually in the evenings. They also recommend that you start at 1 mg and increase the dose by 1 mg each month until you stabilized (max 4). To counteract the nausea in the first 2 weeks they recommend domperidone. Personally, I would recommend starting at the lowest possible dose as I have found the half tablet to be sufficient - maybe I've just been lucky! I certainly would not wish to return to living with the RLS as bad as it was.

Hope this info is useful.

Linda

Medical Reply

Thank you very much for sharing your experience with this new drug that helps RLS. Here is the USA, the only strength of cabergoline (Dostinex) is .5 mg. We always like to start with the lowest dose on any of the RLS drugs, then increase if necessary. Starting at .25 mg and slowly increasing seems very sensible and staying on the lowest effective dose also makes lots of sense.

With Mirapex, we often start with 1/2 of .125 mg tablet (the lowest dose they make) and increase by 1/2 tablet doses as necessary. It may delay the onset of effective treatment, but it does markedly decrease the adverse side effects, often letting the body get accustomed to the drug (especially side effects like nausea) and thus letting the patient tolerate higher doses than if they had just started with a higher dose.

Keep us informed with your progress.

Sent: Sunday, November 26, 2000 5:46 PM
Subject: New medicine for RLS

I have had RLS all my life and have tried every medication there is, recently I was reading an article about Oxycontin and told my doctor about it and he put me on it to try it out, well he is a wonder drug, one 20mg tablet stops the RLS pain for 8 hrs or more, its a lifesaver. I suffer with the pain 24 hours a day, but no more, just wanted to pass this along.

David A.,
West Virginia

Medical Reply

Ocycontin or any other narcotic will work very well for RLS. The concern with this class of drug is addiction/tolerance. This causes you to become dependant on the drug, but that would be alright if tolerance did not occur with it. Once you become tolerant, you need higher and higher doses of the drug to get the same effect until no dose helps.

Regular drug holidays and substituting a non-narcotic drug like Ultram may help prevent addiction to narcotics. A better way to treat RLS is with the non-addicting Parkinson's disease drugs such as Mirapex or Requip.

Sent: Monday, November 27, 2000 7:41 AM
Subject: Assistance re: Klonopin & Mirapex

I have been taking Klonopin for RLS/PLMD for 5 1/2 years. For 4 1/2 years I have been at a successful dosage of 1 3/4 mg. However, for a variety of reasons, I want to go off of Klonopin, replacing it with Mirapex (and perhaps Ambien as a support if needed). My neurologist and I are working together to do this and I will be consulting with her today as well. (FYI- I am 53, and work in a very demanding job.)

For a week, I have been on 1.5 mg of Klonopin (feeling that I must go off Klonopin very slowly) and 1/2 a tablet of Mirapex (.125). I decided on 1/2 Mirapex tablet because. of a big drug hang-over the first day. I take the medication about an hour before going to bed.

I am experiencing some side effects and wondered if you could give me any suggestions about this process. In the last 3-4 nights I am sleeping "lightly" for about the last half of the night (as if not really asleep or awake). This morning I awoke around 3 and really couldn't quite get back to sleep. I feel a bit spacey (not dizzy or drowsy). Even though I'm not sleeping, I feel as if I could go back to bed and sleep. Very odd feeling! I feel as if the chemicals in my body are shifting (which they are!). Maybe just patience???

Any suggestions about:
(1) dosages and
(2) what to expect for side effects would be greatly appreciated.

Thank you very much,
Carla D.

Medical Reply

It is always hard to deduce what is causing the side effects when you do more than one change at a time. My guess is that it is likely the reduction in the Klonopin that is responsible for your symptoms (although this is a guess so I could be wrong). The reduction in your already high dose may result in there not being as much drug helping you in the latter half of the night, thus allowing your PLMD (or anything else) to wake you up, then not having enough drug in your system (for you) might cause you to stay awake.

The dose of Mirapex is probably too low to help or hinder you. When the dose is higher (1-2 tablets), it might be easier to wean off of Klonopin as your RLS/PLMD will not be so much a factor.

Sent: Monday, November 27, 2000 6:40 PM
Subject: PLMS

I am 68 and I have had sleep difficulties for some years now. I believe that I have PLMS, but my legs jerk BEFORE I go to sleep , and it is that which mainly prevents me from falling asleep (I believe that I have also been sometimes woken up by jerks). Sometimes it is my whole leg, sometimes my ankles or feet etc. I also now at night often have strange and unpleasant sensations in my legs (that probably build up to a jerk anyway) but absolutely no irresistible desire to move them.

I used to take Xanax to help me sleep, but I always took a very low dose and then not every night, and therefore often had very poor nights.(Incidentally, it was a great relief to read the section on Xanax on the web site) Even though I took very low doses and not every day, I started to build up a tolerance and didn't really want to take more than 25mg, because when I occasionally did I felt rather drugged the next day.

When I read about Mirapex, I took the RLS Foundation Newsletter to my doctor who agreed to give me a prescription ( though she looked rather appalled at some of the side effects that she called up) and she asked me to report on how it worked. At first it was miraculous: I took 1/2 of the lowest possible dose, with occasionally a second 1/2 later in the night. Recently, 1/2 plus a 1/2 almost immediately after has not been perfectly successful and I have to take 1/2 a Xanax as well to get to sleep.

My questions are:

1)     Is this PLMS?
2)     Does one develop a tolerance to Mirapex and/or is there ever augmentation as a result of using it?
3)     Is it OK to vary doses? For ex, sometimes 1/2 a tablet (of the .125 lowest possible dose) if that suffices; sometimes 1/2 plus another 1/2 shortly after if the              first 1/2 doesn't work; sometimes 1/2 plus 1/2 2 or 3 hours later; sometimes 1 whole, plus 1/2 2 or 3 hours later ?
4)    All things being equal, which is less hard on the system Xanax or Mirapex? If somewhat higher doses of Xanax worked, would it be better to go back to that              sometimes?
5)    I was also going to ask whether it's OK to take Xanax or Ambien also, for insomnia, which I still sometimes have, but I saw from a response to a previous              email that this is OK. (The annoying thing is that sometimes I can lie awake, fully awake and unable to sleep, for some hours without feeling a twitch; but I              assume that this is because I AM fully awake)

This is a wonderful web page--very helpful and consoling!

Vivien R.

Medical Reply

It does indeed sound like you have both RLS and PLMD. Although most PLMD sufferers have the majority of their leg jerks while they are asleep (so they are not directly aware of them), it is very common for RLS/PLMD patients to have leg jerks while sitting in the evening or when lying down in bed.

Tolerance to Mirapex can occur, but this is a relatively uncommon event. This is the better of the two drugs (Xanax compared to Mirapex) and in fact my first choice for RLS that occurs on a daily basis. Once the right dose of Mirapex is reached, sedatives are often rarely needed. If you need Xanax or Ambien for non-RLS related insomnia, it is better to use them on an every other day basis (3-4 times per week).

Most RLS sufferers find that it is harder to relieve RLS symptoms once they occur, rather than to prevent them by taking medication before they occur. Once you establish the dose that works the majority of the time, stay on that dose and do not reduce it as splitting the dose as you have done does not work as well.

Sent: Tuesday, November 28, 2000 12:58 PM
Subject: A progress report

I wrote you a few months ago and described symptoms that you suggested could be caused by narcolepsy or another sleep disorder. This was because I misstated my diagnosis. I had said I had 140 arousals from PLMS a night. In fact, I have 140 arousals an hour. This means twice every minute I am awakened out of restful sleep. No wonder I'm exhausted.

I am also having trouble finding a treatment that works. Mirapex made me so dull that I was not functioning. Requip did not help and gave me horrible hypnopompic hallucinations. Permax was the worst, causing a variety of bad reactions, from face swelling to vomiting. This was very disappointing since I understand these are the best medicines for PLMS.

I take a Tylenol #3 with Codeine for my RLS when it's bad, but it doesn't put a dent in my ability to stay asleep. I have taken Ambien and that helps, but my doctor is concerned, as I am, about addiction. Actually, my GP prescribed Klonopin before the neurologist took over, and that was way too sedating the next day for me. I'm self employed and if I'm not mentally alert, I lose my ability to earn a living. I can't say how important alertness has become to me. I am a very active person.

Now I'm on Neurontin, 900 mg in the evening. It helps some, but I still don't feel rested or "normal." I tried 1200 mg and there was no difference, so I dropped back to 900 mg.

The doctor has just asked me to try Atarax 25 mg. He says that with PLMS individuals can have different reactions to the same drug, and even though Atarax is normally said to increase RLS it might help me sleep through the arousals. I recall your saying in an earlier response to someone that, if your treatment is working, you should feel rested in a few days. I took the Atarax last night and while I only woke up once that I know of, I think I'm going to go to 50 mg if it doesn't work after night three (with my doctor's approval).

What can I hope for in terms of alternatives if this doesn't work? Should I consider continuing with Ambien despite the addiction issue? Is there any other course of treatment that I might ask my doctor about? I understand that narcotics work for RLS but not necessarily PLMS. Is this correct?

When I was first diagnosed, I had hope for a treatment plan that would help sooner than this, and I admit that sometimes I get quite down about the problem. When I was at my worst I asked for stimulants, but the doc says he's afraid they will only make the PLMS worse. We discussed the potential of my having narcolepsy, and he said that typically narcolepsy sufferers can nap for fifteen minutes and feel rested, while I nap for hours and still have a hard time waking up. But I'm not clear on what would happen if I had both PLMS and mild narcolepsy. I wonder if I should wait out the medication plan for PLMS before having a second sleep study or not?

Thanks in advance for your reply,
PTS

Medical Reply

PLMD can be much more difficult than RLS to treat for some patients. Usually, Permax, Requip or Mirapex work quite well, but there are obviously lots of exceptions. 140 PLMD arousals per hour is very severe and should result in severe daytime sleepiness that can be indistinguishable from narcolepsy. Naps are not always refreshing for narcoleptics either. Ambien may be your best bet as it may keep your PLM's from causing arousals. It has a very low (if any) addictive potential.

If Atarax works, that is fine, but is does usually worsen RLS. Narcotics help PLMD only in some patients so I generally do not recommend it for this problem. A newer Parkinson's disease drug called Dostinex is another possibility. A repeat sleep study would probably not be of much benefit until your PLMD is better treated.

Sent: Tuesday, November 28, 2000 5:34 PM
Subject: RLS and leg pain.

I have been diagnosed and treated for RLS for over ten years. Right now I am taking 2 Levodopa/carbidopa 100/25 tablets. My major problem now and for the past five or so years are pain in my legs, the shoulders joints and my left foot. Above both knees are very sensitive to the touch. When I wake up in the mornings, it is worse. After work and I am resting the pain comes on.

My sleep specialist said my sleep disorder does not cause these pain problems. I have gone to other types of doctors and they have tried other treatments, but nothing works. Does any others with RLS and/or PLM suffer these pain problems? If s, what type or treatments do you take. I will pass your info with my sleep specialist.

Thank you very much,
Douglas C.

Medical Reply

It is very difficult to say whether or not the PLMD/RLS is the cause of your leg pain. Certainly, very active PLMD during sleep can result in leg pains, so that is a distinct possibility. Mirapex or Requip are better choices than Sinemet and may help relieve the nighttime PLMD.

Sent: Wednesday, November 29, 2000 1:08 PM
Subject: Low back RLS?

I have been diagnosed with RLS for about a year, but have been struggling with it for about 10 years. I'm 45 and female. The last several months have been miserable. My symptoms are not just at night now, but begin about noon or 1pm.I've been referred to a neurologist and just yesterday started on Mirapex. After all the positive comments about Mirapex I've seen on your website, I'm hopeful. I've been on several meds with short-lived results.

My RLS discomfort is all in my low back.(I think this delayed my diagnosis.) Moving my legs or walking relieves the discomfort in my back. How unusual is this "low-back" RLS? I've read that it can affect the arms too, but haven't heard of only the low back. Does this "back" stuff respond to treatment the same as RLS that affects the legs?

Thanks for any information. Your website is very informative and supportive. At 2 or 3am it's nice to go to your website and be reassured you're not alone or nuts (even if I have to stand to use the computer!)

Colleen S.

Medical Reply

You are definitely not alone as 5-8% of the population have RLS. The RLS symptoms can occur anywhere in the body, although the legs followed by the arms are the most common. We have seen RLS in the chest wall muscles, abdominal muscles and even lower back such as you are experiencing.

Sent: Friday, December 01, 2000 4:23 AM
Subject: Diet for Restless Leg Syndrome

Just thought I would share this in case it could help someone else out there with RLS. My husband has had RLS since he was a child. He is now 59 and over the past ten years his symptoms have basically ruled our lives. There were a few years when he was so exhausted from lack of sleep he wanted to die and it was extremely hard on our family. Then he was prescribed codeine and for about the last 5 years managed to get some sleep and endure the problem reasonably well. Again recently his symptoms became worse and he was having them all day as well as at night.

I had been reading about pH balance and acidity. I read a book called "Sick and Tired" by Dr. Young and promoted by Anthony Robbins. Dr. Young recommends almost a complete elimination of any acidic foods, especially fruit, for general improvement in health.

Being totally ignorant about these things, but desperate to see my husband's health improve, I suggested he try this. For years, he has, everyday, eaten four apples with dry toast for lunch, as well as a banana for breakfast. He stopped eating these fruits about two months ago. The results are amazing. He has no RLS during his waking hours. He still takes the codeine before he goes to bed just because he isn't prepared to go through withdrawal right now, but will do this after Xmas and I will keep you posted. For us, regardless of the reason or scientific explanation, this is pretty close to a miracle.

Thanks, Eva

Sent: Saturday, December 02, 2000 9:26 AM
Subject: Disappointed by iron and Mirapex

I wrote you before about two weeks ago. I'm the one that thought iron-treatment was already successful after four days. As it appears now, I have been far too optimistic. I am now in the fourth week of iron-treatment and the RLS-symptoms have come back in all their severity. I am so disappointed!!

I have started to take Sifrol (the Dutch equivalent of Mirapex) and am currently taking 2 tablets of 0.125 mg before I go to bed. The effect of this drug is another disappointment. I have the impression it doesn't do anything for me. I know many other RLS-sufferers take higher doses, but shouldn't I at least get some relief from this dose?

Right now, I don't know what to do. Should I try to add a third tablet? If so, can I take this tablet together with the other two? Or is it better to spread the intake of Sifrol over the day? I read in your answer to another patient's letter that Sifrol (Mirapex) works best when taken before the first RLS-symptoms occur. My problem is that I have RLS-symptoms 24 hours a day.

Thank you in advance for your advice,
Saskia E. from Holland

Medical Reply

You should check with your own doctor, but in your case it would be reasonable to take the extra (third) Mirapex tablet with the other two. If that dose works, then it may also be helpful to repeat the same dose (of 3 tablets) up to twice more daily (so that you are taking it for a total of 3 times per day).

It does generally work better to take the drug before the onset of RLS symptoms rather than waiting for symptoms to occur.

Sent: Saturday, December 02, 2000 7:11 PM
Subject: What has helped me...

I am sending you a letter I sent to the RLS Foundation of America. I hope you will publish it.

I was really looking forward to your information packet, which arrived this week. In your pamphlet you state that the RLS Foundation does not advertise, endorse, or sponsor any products or services and yet all I see listed are drugs, which in my Physicians Desk Reference 1998, have long lists of horrible side effects. I also see that your advisory list only contains medical doctors and not one Homeopathic or Naturopathic doctor. This makes me ask if you are underwritten by drug companies, which I certainly hope not.

I am 59, a female, retired R.N. and herbalist with severe chemical sensitivities from past drug use of anti inflamatories and sleeping medications, plus restoring old houses. I have had intermittent bouts of RLS for 15 years becoming more frequent and severe. After 2 years of trying various herbs and other aids I have now found that due to the herbs I have improved circulation and also general health.

Here are the things I have tried and use for complete removal of symptoms:

Super Once a Day by Quest B Complex 50 mg ( High B’s are crucial for nerve endings and relaxation of muscle tissue ) use twice daily if in RLS crisis

Coenzyme Q 10 1-3 times daily ( to increase O2 to cells and side effects to this medication is cured gum disease)

Lega Ven (Aesculus hippocastum) Firms and tones slack and dilated veins 1-2 daily

Vitamin C 3-6000mgm daily is an antioxidant, anti-inflammatory and strengthens blood vessel walls. It works well with Vitamin E which is also an important antioxidant and prevents blood clots

Folic Acid 2 mg twice daily with B12 create healthy red blood cells and is necessary for nervous system function

St. Johns Wort one of Germany’s most prescribed herbs relieves chronic nerve pains like peripheral neuropathy and nerve damage from trauma ( side effects relieves insomnia and depression)

Butchers Broom improves overall circulation and relieves edema (a great remedy for varicose veins and hemorrhoids )

*** LEG CRAMP RELIEF a natural Homeopathic Medication chew 2 at bedtime is the most important for relief (by Naturo Bio)

B12 1000IU IM daily for 10 days if in crisis then sub lingual

Zinc 50 mg daily at bedtime

Calcium Citrate 1,500 daily with magnesium 750 mg take at bedtime ( other types of Calcium absorb poorly SISU is a top quality product)

B3 100 mg daily dilates small arteries and increases circulation ( do not take if you have high blood pressure or liver disorder)

Homeopathic Remedies are Rhus Tox and Zincum Metallicum

At bedtime massage the legs with Arnica and St. Johns Wort Oil and do accupressure by pressing mid point on the calves, the inner leg below and above the knee where it is the most tender holding steady pressure for 40 seconds

Lie on a heating/vibrating cushion putting the back part under the legs in bed for 20 minutes before sleep

Remove from diet all refined sugar, caffeine and chocolate until legs are pain free and reintroduce with caution

I hope you will consider the above remedies, which give your subscribers an alternative to the physical damage from the long-term use of drugs because unfortunately RLS remains for the life of the individual.

Thank you,
Margie T., R.N.

Medical Reply

We will print your letter on our web site. Many of the remedies you have suggested have been sent to us before but seem to help only a very small minority of RLS sufferers.

Sent: Sunday, December 03, 2000 9:20 PM
Subject: RLS-Changing Medication from Clonazepam to Mirapex

I have had RLS for many years but only recently was I properly diagnosed. I have been on Clonazepam (0.25 mg) at bedtime and have much improved sleep. But, the Clonazepam does nothing for the pain which I primarily have in the evening when I try to relax, I asked my doctor if I should change to Mirapex.

Since my doctor knows little about RLS, he said it was up to me. He prescribed three 0.125 mg tablets per day to start. This seems excessive when I read the dosages recommended in your responses to RLS patients. Your opinion would be greatly appreciated.

Thanks,
Phil K.

Medical Reply

Most doctors who have no experience of knowledge of Mirapex will consult the PDR (the big book with all the drugs listed and how to use them) to see how to prescribe it. The dosage information listed in the PDR is for the use of Mirapex for Parkinson's disease patients which has nothing to do with its use for RLS patients.

The dose that he prescribed for you is the starting dose for Parkinson's disease patients. I generally start with 1/2 to 1 tablet taken 30-60 minutes before bedtime. If this dose is not sufficient I will have the patient increase by 1/2 or 1 tablet every 5-7 days until the symptoms are relieved. If daytime RLS is a problem then other similar doses can be taken earlier in the day in addition to the bedtime dose.

For more information, see our RLS Treatment Page .

Sent: Monday, December 04, 2000 10:33 PM
Subject: RLS & PLMD

Thanks so much for your web site! It's been quite informative. It's 01:30 now and I'm looking forward to a half decent sleep starting 02:30 until 06:00 when I must wake to go to work. I'm a full time RN. I'd venture a guess that I've had PLMD soon followed by RLS for a few years now. Unfortunately my RLS has worsened over the past few weeks.

I've taken Sinemet (don't recall dose at preset) as needed with little/no effect. I also take Advil or extra strength Tylenol every night to assist. Tomorrow I meet with my physician to discuss my lack of sleep which is a growing concern in my profession and also other medication options. My question to you is are there medications that as a medical professional that I shouldn't be taking?

I, like many others, am seeking some type of relief not only to get some comfort & sleep, but also so that my husband and I can sleep in the same bed! I'll have to show my husband this web site so he'll have better understanding. This is beginning to take a toll on both of us!

Kathy

Medical Reply

Mirapex and Ambien are the standard drugs that work well for almost all RLS patients and have the least chance of side effects for the maximum benefit. Your other medical problems should have nothing to do with your RLS or treatment.

Sent: Tuesday, December 05, 2000 11:13 AM
Subject: RLS getting worse as one gets older?

I was really worried I had something awful. I have had restless legs for a very long time now. It worsens when I have had to take aspirin or Tylenol. It is not a constant thing as yet, but I wonder if it will get worse. I thought that I might just be experiencing a withdrawal from the aspirin or Tylenol or caffeine. I just could not figure it out. Right now I only experience the restless legs about a couple times a week, but it is miserable. I have to get up and move around the room and rub my legs. It last about 30 minutes at a time. Is this just the beginning?

Darlene C.

Medical Reply

Generally RLS gets worse as you get older. This can happen very slowly and take many years. There are many good treatments already available, so you do not have to suffer in silence.

Sent: Tuesday, December 05, 2000 1:00 PM
Subject: RLS not better with Klonopin.

My boyfriend has RLS, and he suffers terribly. He can't sleep at night and because of the medication that he takes can't get up in the morning.

Is there any thing that I can be suggested to him? I feel so helpless. He can't live his life like this, this condition rules his life. He takes a drug by the name of clonazepam (the spelling may be incorrect) and sometimes he'll just take more and more until last week Monday his mother has to take him to the hospital because she was afraid that he may of OD.

Any suggestions other than, deal with it! Would be greatly appreciated.

Thank you,
Michelle M., Ontario, Canada

Medical Reply

Klonopin (clonazepam) is not the best drug for RLS (despite being recommended in the textbooks for this disorder) as it makes people sleepy in the daytime and has a significant addictive potential. The best drug available in Canada for bedtime sedation is Imovane (zopiclone) which is a non-benzodiazepine similar to Ambien and Sonata which is available in the USA.

A better approach is Mirapex or Requip which are the newer Parkinson's disease medications which may even eliminate the need for sedative medication in the first place.

Sent: Tuesday, December 05, 2000 2:19 PM
Subject: RLS - change from carbamazepine to cabergoline

Thanking you once again for your help in the past.

Following on from your advice we propose to switch from carbamazepine to Cabergoline (we live in the UK) (unless you think it better to try Mirapex or Requip first) and from clonazepam to Ambien or Xanax.

We would be grateful if you would advise on the following points.

1. The existing dose of Carbamazepine is 100mg morning and lunch time and 200mg at night (400mg total). Can this be stopped suddenly or should it be reduced gradually. It has been used for about three months. Similarly, is there a problem in coming off Clonazepam suddenly.

2. Should we try Ambien first or Xanax?

3. Please could you advise on suggested dosage of the new medication.

Many thanks once again for all your help,
Leslie D

Medical Reply

We now have cabegoline here in the USA, but I have not yet had any experience using it. We have had a few letters from Europe and England reporting success with the drug. There is a concern about daytime sleepiness with Mirapex and Requip, so English doctors are preferring to prescribe cabergoline instead. The problem with daytime sleepiness does not occur very often with the low doses used for RLS patients, but if that is a concern, then cabergoline may be a better choice. You may need some trial and error before finding out the correct drug in this class for you.

Tegretol can generally be stopped abruptly without problems. Clonazepam should be weaned off slowly. Ambien is preferred above Xanax generally.

As for doses, they are described in detail on our RLS Treatment Page .

A Reply from Leslie D.

Sent: Wednesday, December 06, 2000 1:34 AM
Subject: Re: RLS - change from Carbamazepine to Cabergoline

Many thanks for your prompt reply once again. I have a copy of your RLS Treatment Page but unfortunately the details for Cabaser (Cabergoline) are not too specific: 'The average dose of cabergoline was 2.1 mg, with a range of 1-4 mg'

Could you possibly suggest where I could get more specific details as to starting dose and frequency?

Many thanks,
Leslie D.

Medical Reply

I suggest you start with 1/2 of the .5 mg tablet and increase the dose every week if necessary until you have relieved your RLS symptoms.

A Reply from Leslie D.

Sent: Thursday, December 07, 2000 3:07 PM
Subject: Re: RLS - change from Carbamazapine to Cabergoline

I found a reference to a Danish study:-

"Based on the study findings, Dr Stiasny said, "Cabergoline may be an effective alternative treatment for RLS." The pilot study conducted at her research unit examined nine RLS patients treated with 1-4 mg of cabergoline administered as a single evening dose in a 12 week, open label trial. All the patients had moderate or severe RLS and had experienced insufficient benefit with levodopa, or had also developed some daytime augmentation."

The reference there is to a single evening dose. Would you concur with this or would administration in the morning be more appropriate? We are also planning to use Ambien before going to bed.

Thank you, Leslie D.

Medical Reply

Most studies use dopamine agents at bedtime when RLS is at its worst. The goal is to treat the RLS with the dopamine agent so that sleeping pills are not needed.

When used as indicated for the treatment of hyperprolactinemic disorders, cabergoline is given at .25 mg twice weekly then increased by .25 mg as needed on a weekly basis. This of course is very different than its use for RLS. Until we get more experience with the drug for treating RLS, I would suggest that the dose be kept at once a day (in the evening or before bedtime as symptoms demand).

I would still recommend Mirapex or Requip before cabergoline due to the wealth of experience and success that we have with the drugs (and most often Ambien or any other sleeping pill is not even needed). I have very few side effects (including sleepiness during the daytime) in my RLS patients.

Sent: Wednesday, December 06, 2000 10:16 AM
Subject: RLS in the family.

My mom used to call her RLS the 'kickies'. She died five years ago at 85 without knowing that it was RLS and never discussed symptoms with her doctor. Her mom had it too. Guess she thought it was just a case of nerves or poor circulation. I used to watch her legs jerk all the time in the late evening but we never discussed it a lot and suddenly a couple of years ago mine started to do the same thing. I figured it must be something medical at that point.

I found info on the WEB and was very grateful to find out this was a real disease. I have discussed with my doctor and he put me on Clonazepam which stops the 'crawlies and kickies' within 30 minutes and then I can go to sleep. Its wonderful medicine. My arm has started doing the same thing sometimes which is really bad when the legs and arms are under RLS attack at the same time. I guess it looks weird to those seeing me.

I really enjoy reading the letters on your site. So many of us are out there with RLS. I am so grateful for the Clonazepam but have a caution for users. The first time I took it was while watching TV. By the time I got up to go to bed I fell down and had to crawl up the stairs. The medication made me very 'drunk' but that's ok as long as I know how it works now and it definitely stops the attack. I do not take it regularly and have attacks every couple of weeks or longer.

So far I have not kicked my husband while in bed but I have warned him!!!

Terri

Medical Reply

I actually recommend Ambien rather than clonazepam (Klonopin) for RLS as it has less side effects.

Sent: Thursday, December 07, 2000 7:59 AM
Subject: Thanks for your advice (see previous letter above, Monday, December 04, 2000 10:33 PM)

Thanks for your prompt response. I reached "breaking point" this week after weeks of sleepless nights. The tears were flowing to my physician ~ not caring about my flared up asthma or frequent palpitations..just wanting some sleep and comfort. My physician prescribed Valium to take at bedtime for a few weeks until I've stabilized then to switch to Ambien at that point. The past two nights I have slept the most in a long time. I feel I'm able to think clearly now...thank GOD!

Thanks again...I enjoy reading about others too, it is a support to know that you're not alone.

Kathy

Medical Reply

Good to hear that you are doing well. Although Ambien can be used for the long run, I generally like to use Mirapex so that the need for any sedative may be reduced and more often even eliminated.

Sent: Wednesday, March 05, 1997 9:27 PM
Subject: Restless feet

I am 53 years old male, having this problem for over 30 years, and appears to be getting worse,especially under stressful days. This started with sudden appearance of varicose veins on top of the both feet. When going to bed, I get symptoms of restless feet and no sleep. Some relief is gained when I raise my feet up on pillows. Cold water spray gives additional relief.

During office meetings my feet do ache and bother me. The removal of my shoes is necessary with frequent movement of my feet. I always thought it was due to low blood pressure and dismissed the problem. The onset of aching and a feeling of swelling of the feet occurs whenever I sit. Movement relieves the pain. Shoes are unbearable and wearing them is bothersome.

This week I decided to seek medical help and my doctor suspected that it is due to my LDL cholesterol level [slightly high] and I could have blocked arteries around the feet. He prescribed Lipitor, multi-vitamin B and suggested that place magnets around the feet during the sleep. I don't have any chronic disease. I don't have high blood pressure and diabetes, and the family history is negative.

Since this problem started when I was young, I doubt the recent started boderline LDL cholesterol is the reason which causes my feet problem. Please reply if the medication is appropriate and any medical information that can relief this horrible sensation. It deprives me of sleep and concentration of work.

Medical Reply

It does sound as if you have RLS (Restless Legs Syndrome). This has nothing to do with your high cholesterol levels, but it is a good idea to treat the high cholesterol (with diet at first, then medication if necessary) to prevent heart attacks in the future. There is no evidence that magnets help any problem including RLS.

Mirapex or Requip are the best choices for your problem and you should be started on one of these drugs as soon as possible. It is quite likely that your family doctor does not know much (if anything) about RLS and the correct drugs to treat this disease. You may need to consult a sleep specialist or neurologist.

Sent: Saturday, December 09, 2000 3:45 PM
Subject: RLS & Tahitian Noni juice

Have you heard if Tahitian Noni juice helps RLS or if taking Tahitian Noni juice as an antidepressant if it will bother RLS?

Thanks,
Elaine W.

Medical Reply

I have not heard any information about Tahitian Noni juice and whether or not it has any effect on RLS or any other medical problem.

Sent: Saturday, December 09, 2000 6:30 PM
Subject: RLS/PLM & MS

I have both conditions, confirmed by two sleep studies over the last two years. It has been difficult getting the right type and level of medication. Am currently on 1 g (four .25 mg tablets) of Permax per day, which barely contains the problem. I usually take the first two Permax tablets at around 7.00 pm when the RLS symptoms become unbearable and the jerking begins to really kick in, and the other two an hour before bed. Sometimes, if I have had a bad night, I may need to take a .25 mg Permax tablet earlier than this.

I am under a sleep specialist at the Alfred Hospital in Melbourne who recommends this regime. The Permax makes me extremely drowsy and once I've had the second two tablets, I'm usually compelled to go to sleep. My partner observes that I still move during the night, and I always wake up at around 3.00am because of the PLMS and also the need to go to the toilet. Sometimes, if I try to sleep during the day, I also have PLMS.

Requip and Mirapex are not yet available in Australia. I may end up having to take more Permax but I understand that Permax can also have a rebound effect. Do you have any suggestions? Would taking something extra to keep me asleep help?

I have had MS for thirty years but am relatively well. I understand that there are no connections between the conditions but I do wonder sometimes if my RLS and PLMS is not a little worse because of the damage already done by the MS.

The days where I feel truly rested are rare and I really value a good night's sleep. It makes daily work and the management of life so much easier.

Thank you for your time,
Kate S.

Medical Reply

There is no relationship between RLS and MS and I doubt that one may make the other one worse. There is no concern about rebound with Permax, but you may be getting tolerant of its positive effects on RLS.

You are already on a high dose of Permax and here is the USA we would switch you to Mirapex or Requip which should work well as there does not appear to be cross tolerance. Other Parkinson's disease drugs which may be available are Parlodel and Symmetrel. There are newer dopamine agonist drugs such as cabergoline which may not yet have come to Australia.

Other choices would be to add a sleeping pill such as Ambien or Xanax at bedtime (remember to take regular drug holidays) or pain medication such as codeine/hydrocodone or Ultram. Neurontin is another choice which may be added to or substituted for Permax.

Sent: Sunday, December 10, 2000 1:35 PM Subject: Re: Requip side effects

I have suffered from RLS for 25 years (I'm 46), gradually increasing in severity over the course of years to the point where it is extremely severe at this point. I have tried many many medications to try to control the syndrome. Finally my neurologist resorted to methadone 10 mg per night, which proved to be a life saver, even though it has a terrible reputation and is difficult to obtain without significant inconvenience and raised eyebrows.

Unfortunately over the last 6 months I have begun waking at regular intervals throughout the night, sleeping no more than 2 hours at a time. The RLS symptoms have abated and no longer bother me as long as I take my methadone before dinner (quite an inconvenience to one's social life!) -- I have not had to increase the dosage over the three years of treatment -- but the constant waking during the night is causing extreme fatigue and drastically interfering with my quality of life. I can't pinpoint any cause for my arousals.

I recently had a sleep study to see if they could determine the cause of my awakenings. I did take the methadone at my regular time and therefore did not suffer from RLS symptoms during the study. The results of the study were shocking! I was told that I was awakened 271 times from 11:30 P.M. to 5:30 am, or an average of 58 awakenings per hour -- about 1 per minute. I did achieve a short period of REM sleep. There were no other indications of what might be causing the awakenings -- no sleep apnea, no PLMS, no other apparent causes. The night seemed normal to me -- the surroundings and electronic hookups didn't seem to bother me. Just my usual periods of wakefulness.

The doctor prescribed Requip and Klonopin to gradually try to wean me off of the methadone. I have cut my methadone in half, but have obtained no relief from the Requip. Without the regular dose of methadone the RLS symptoms occurred as usual. After about 2 weeks on the Requip and a week adding the Klonopin I began noticing augmentation and rebound -- symptoms beginning earlier and with greater severity. I find myself pacing with the tears running down my face desperate for relief and sleep. With the new medication regime I am also extremely sleepy during the day and have become afraid of driving, even for short periods of time because it is so difficult to keep from drifting off. I find it difficult to concentrate at work, and I have even fallen asleep with my face in my dinner!! only to awaken with severe symptoms unable to return to sleep.

My questions are:

1. Have augmentation and rebound been found to be problems with Requip? I experienced these problems with Sinemet, but I had not heard of the same side effects occurring with Requip.

2. Could the methadone be causing the incredible number of arousals I'm experiencing? If not, are there any other conditions or syndromes that could cause such frequent sleep disturbances?

3. I tried another Parkinson's medication ( I think it was Permax) but experienced breathing difficulties and an extremely stuffy head. Are there any other dopamine agonists or medications that I might try?

4. I'm really at my rope's end. I am having trouble keeping up with my job, with driving, and with any semblance of a social life. Where do I go from here? The doctors who conducted the sleep study are respiratory specialists, although they are certified sleep therapists. I have considered traveling to Philadelphia to see if there might be other specialists with more experience in neurological complications to RLS, but I don't know where to begin finding the best specialists and don't know if I can reasonably expect any help or if I must somehow adjust my life to live with this condition -- I've even begun to look into disability, a heartbreak because I love my job.. Could I expect any different course of treatment or help by trying to find a neurologist who specialized in RLS instead of respiratory specialists who concentrate on sleep apnea?

Thanks so much for reading this lengthy post, but I would be most grateful for any help.

C. Baker

Medical Reply

It is very difficult to figure out why you have so many arousals without any explanation. We rarely see that on sleep studies and I would have to see the study (or suggest another study at a different center) to confirm that high rate of arousals without on obvious cause. Methadone (and other narcotics) has not been associated with this type of sleeping problem, but of course anything is possible.

Klonopin is a drug that I try to avoid as it has a very high incidence of daytime sleepiness. Ambien would probably work much better and not leave you sleepy at during the daytime. In fact, your best treatment may just be the methadone 10 mg (if you have not increased the dose, this drug may be ideal for you) and Ambien.

Augmentation and rebound rarely occur with Mirapex and Requip. It is much more likely that these problems may be arising from your tapering of methadone which has been controlling your RLS. You may need a higher dose of Requip (you did not say what dose you were on) or change to another dopamine drug. Other choices include Mirapex (our number one choice as we have the most experience with it), cabergoline, Parlodel, or Symmetrel.

With proper care you should be able to continue an active healthy life. Do not give up!!

Sent: Sunday, December 10, 2000 8:57 PM
Subject: PLMS

Thank you for the wonderful website. I have had mild RLS all my life but in the last year have developed PLMS. Like most other writers I didn't know about this until my wife told me. When she stopped sleeping with me because she couldn't rest I sought help. The first doctor gave me amitriptyline which did nothing for the symptoms and almost killed me by causing daytime drowsiness. I drive a UPS truck.

The second Doctor prescribed Sinemet and the first two weeks were like a miracle. I slept with no twitching at all. Now, however, in the fourth week the syndrome has returned, and I am back in the guest room. Is it normal to become desensitized to Sinemet in just three or four weeks? I have been taking one 25-100 tablet. Would two help?

Would you recommend different drugs for me? I have had RLS all my life but never serious enough to seek help. It was just a nuisance. But this PLMS is very divisive to our marriage. Thank you for any advice. Has PLMS been linked to potassium?

Nick C.

Medical Reply

Do not go higher on Sinemet (and in fact you should stop it once you replace it with the newer better RLS drugs). This drug can cause problems with rebound and augmentation of your RLS which will make you a lot worse than when you started. The correct drug to use is Mirapex or Requip. This class of drugs has an excellent chance of alleviating your RLS symptoms and even reducing or eliminating your PLMD.

If your PLMD is not significantly improved by Mirapex or Requip then their are a few other choices. If the PLMD is not affecting your sleep (and not resulting in daytime sleepiness) then the best treatment is to get twin beds and push them about 6 inches apart when actually going to sleep. Ambien or Xanax might also help reduce the leg movements, but taking a drug to prevent kicking your wife (assuming that the PLMD is not affecting you otherwise) is somewhat of a drastic measure.

PLMD is not related to potassium or any other mineral/vitamin deficiency.

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