Patient letters on RLS symptoms and remedies- Page 63

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Sent: Sunday, October 02, 2005 6:19 PM
Subject: RLS better with Marie Goodwin's low salt diet?

I read Marie Goodwin's booklet on salt reduction to cure RLS. I followed her guidelines and am very pleased with the results. I was taking Mirapex and had gone from .25 mg a day to .75 mg twice a day over a two year time span. I was reluctant to use higher dosages but I was getting very little sleep. Then I read Marie's booklet and reduced my salt intake to 1000 mg a day.

That was two years ago and the results were startling. I continue with my .75 mg of Mirapex twice a day but I can sleep the entire night through. It may not help many but it has made a dramatic change in my life. I am 75 years old and have had RLS for 15 years.

Dale F.

So far very few RLS sufferers who have tried this diet have had any significant benefit for their RLS symptoms. A few have experienced improved symptoms for a few days only. Your two year improvement is somewhat of an exception and may be due in part or in whole to the Mirapex that you are taking.

For more information, see the letter on Page 62, Sent: Tuesday, September 27, 2005 8:07 AM.

Sent: Tuesday, October 04, 2005 10:14 AM
Subject: Aspirin for RLS?

Just a few lines in the event it may help any readers. I've suffered from RLS since at least 1975, when it arose during law school, and whenever I raised it with physicians I always got a blank stare. Since then, by trial and error, I discovered that an aspirin or two just before bed or if awakened at night almost always worked to allow me to sleep. However, it did nothing to reduce movement, I am told. I also always brought an aspirin to the movie theater, and on airplanes, and discovered that any chair or sofa which raised my knees at all would set off the RLS.

Since, Tylenol, Advil and Aleve (or their generics) have also usually worked, tho in the last two years the RLS has gotten much worse (not only do I have the creepy, crawly, itchy under the kneecap feelings, I also can feel the muscles or something firing off hundreds of times in my calves) so that I now have decided to get a prescription for Mirapex.

I was part of a drug study last year for Mirapex and it worked wonders for the 12 weeks of the study (assuming, of course, that I wasn't on the placebo). The only bad part was when the study ended, the rebound effect of the RLS gave me the worst 2-3 nights of my life, and the RLS since seems to have gotten significantly worse.

So, for those who hope to avoid prescription medication, they may wish to give the over-the-counter analgesics such as aspirin, etc. a try first.

Many RLS sufferers have tried aspirin, acetaminophen or ibuprofen to relieve their symptoms. However very few have benefited from this treatment. We will still post your recommendations on our site for others to read.

Mirapex should work much more predictably and effectively for your RLS.

Sent: Wednesday, October 05, 2005 8:20 AM
Subject: Questions about medication

I will try to keep this as brief as possible while explaining my situation. This is with the hope that it will give you some insight and hopefully some answers for me.

I’ve read the list of optimal medications for RLS. Unfortunately for one reason or another I have had a problem with all four categories. None were given to me for RLS but for other problems. I am enclosing this list in a separate e-mail to follow.

About seven years ago I went to a sleep center for evaluation. At the time I went for chronic insomnia and RLS symptoms. I was tried on several medications. They each either didn’t work or caused bad reactions and I had to stop. Also I found out that I can not take any of the benzodiazepine drugs as they all make me hyper and restless. To make a long story short the physician became frustrated that nothing was working and pretty much gave up on me.

A short time after this we were in a serious auto accident. I was put on Oxycontin for severe chronic pain. This was after two failed lumbar back surgeries and the accident. I had, previous to the accident had several nerve blocks which always worked and helped. After the accident I had several more to no avail. They each made the pain worse. I was on the Oxycontin until February of this year. During the time I was on it the RLS symptoms went away so I pretty much forgot about it.

I had to be taken off the Oxycontin as I started itching and breaking out in hives. At that time they tried Avinza. This is morphine and it too made me restless and agitated. I ended up going cold turkey off the Oxycontin. That is another story of my trip to hell and back.

I ended up going to another pain clinic for help. The new clinic tried me on Duragesic Patch, Kadian and Methadone. I had terrible head and ear pressure from each and started the itching and hives from the Methadone. They who had told me were with me for the long haul and would find something to help, gave up. I was told that perhaps a new medication would come out in the future that I could tolerate.

In the meantime my family physician has given me Vicodin. I am to take the 750mg four times per day. It doesn’t take the pain away but I am living with it. Right now the problem is the RLS symptoms have come back with a vengeance.

My family physician just gave me a trial packet of Requip. He really doesn’t know much about it. All the drug reps are now giving it to the physicians since it just recently got approved for RLS. I am exhausted and need to sleep. It has been months now of sleepless nights. The only thing that seems to help is a hot bath. I can only take so many of those a night. The Vicodin helps some if I take one and a half and a hot bath but I still don’t sleep for more than an hour or so at a time. The RLS wakes me up again.

I haven’t started the Requip as I am so afraid that if augmentation occurs there won’t be anything left to treat me with that I can take.

My questions are: How often does the augmentation take place in patients taking the Requip? When this happens and the symptoms get worse, do they gradually get better after a time? What is the average length of time that if Requip works that it does work before this happens? With my problems and opposite reactions to so many medications, what would be left for me to take? I really couldn’t handle the symptoms being worse than they are now.

The bottom line is that I need some advice on what would be the most appropriate course of action for me to take at this time.

I can’t begin to thank you enough for your help and your website.

Sincerely,
Sandra A.

RLS cases such as yours can be tough when many of the effective medications are not tolerated.

Requip and Mirapex are the current drugs of choice for RLS. The exact incidence of augmentation is not known as proper studies have not yet been done (they are in the works). For many of us that have treated a lot of RLS, augmentation is certainly a problem but thankfully, it occurs much less than with Sinemet (over 85%) and is not as severe. If I had to guess, I would say that true augmentation occurs less than 10-20% of cases and may be related to dosage (higher doses cause more problems).

Most cases of augmentation with Requip and Mirapex are easy to handle (often just needing the medication earlier or an additional earlier dose of the drug). A small percentage of patients (under 5%??) have severe augmentation problems and must go off the drug. It is certainly worth trying the medication but increase the dose very slowly and stop once you reach an effective dose.

It often takes over 6 months before augmentation is seen with dopamine agonists. Stopping the medication usually resolves the problem and often the drug can be restarted in a month or so at lower doses without problems with augmentation.

Ultram is another choice which can be alternated with the narcotic painkillers (the few that you can tolerate). Neurontin (if you did not have side effects) or other anti-seizure medications may also be helpful.

Sent: Friday, October 14, 2005 7:27 AM
Subject: Requip questions

My family physician started me on the starter pack of Requip. When I was on the .25mg. I noticed nothing. When I was on the .50mg it seemed to help along with my Vicodin for a couple of hours or so. I would still wake up and have my insomnia & RLS but it was better than before. I am now up to the 1mg. dose. I have taken it for two days now and my insomnia seems much worse again. My hope was that as I increased the dose I would get more time of lessened RLS & insomnia symptoms.

Since I have so many opposite reactions to medications I am wondering what I should do now? I have a few more 1mg. pills and then I will need to fill my prescription which is for 1mg. dose.

Thanking you in advance for any suggestions you can offer. I sure wish I was in CA where I could come and consult with you in person.

Sandra A.

Do you mean that you still have insomnia from your RLS or is the Requip at 1 mg relieving the RLS and causing separate insomnia? Did the time of no RLS improve at all going from .5 mg to 1 mg?

Sent: Saturday, October 15, 2005 4:18 AM
Subject: Re: Requip questions

During the time I was taking the .5 mg the RLS and Insomnia was relieved somewhat for about 2 to 3 hours only. I would take one about 2 hours prior to bedtime. It was when I started on the 1mg that the insomnia got worse so along with it the RLS got worse. Last night I tried cutting a 1mg pill in half ( that was not easy they way they are made) I took one half earlier in the evening and actually got to sleep. Then when I woke up with the RLS and insomnia I took the other half. It seemed to help.

Can you tell me how long after you take a pill before it is supposed to start working? I am going to be out of the starter packet of the Requip. My prescription is for 1mg pills. I was thinking of asking the pharmacy to give me the .5 mg instead and doing what I did last night. Would that be appropriate? Also when the RLS starts up in the afternoon would it be appropriate to take a .5 mg at that time?

Do you feel the problem with taking the 1 mg is something that would pass and I need more or should I try the above?

Also can you tell me how taking Estrogen effects the Requip? I read on the actual www.requip.com site something about that issue and didn't know what they meant. I have .05mg patches of Estraderm and have been afraid to use them since starting on the Requip. It is a new prescription so I can wait if it is going to cause another problem. My physician only gave them to me due to my age and possible bone problems.

Sandra A.

Requip should start being effective within 1-3 hours (about 1 hour for most) after it is taken. The dose usually lasts for 6-8 hours. It is not clear why taking 1 mg should not relieve the RLS better than .5 mg as this is the case for almost all other patients. Sometimes increasing from .5 mg to 1 mg may cause more insomnia but the RLS should be better.

Your doctor is actually supposed to write Requip .5 mg tablets with your starter pack, however it is certainly at his discretion to do otherwise. As the pills are hard to cut in half, the lower strength tablets allow for more flexibility in dosing. You might do better by taking .5 mg 2-3 hours before bedtime then another .5 mg just before going to bed. It is also very likely that with time ( a week or so) the insomnia side effects may dissipate.

Estrogen slows down the metabolism of Requip (it makes .5 mg dose act like a higher dose of .75 mg for example). So, when you start your estrogen, you may need to decrease your dose of Requip by about 35% or you may potentially have some side effects. If you are staying on a stable dose of estrogen, no further adjustments are necessary. However, the use of estrogens for bone problems (osteoporosis) is quite controversial these days due to the recent findings of the negative cardiovascular effects of estrogens.

Sent: Thursday, October 06, 2005 3:45 AM
Subject: Neurologist has changed my drugs!!!!

I saw my neurologist for the 2nd time today. He has taken me off Effexor XR and replaced it with 50 mg Endep to be taken at night. He has also increased the Cabaser to 2mg at night instead of 1 mg in the morning, even though my legs have been good, but I'm only getting about 4 hours sleep a night, and I have to stop taking 30 mg Baclofen.

I asked about Mirapex and he'd never heard of it, wasn't in the OZ MIMS book either. I then mentioned Wellbutrin (Zyban) and was told that was only used to give up smoking and sometimes as an antidepressant.

I asked him about pain killers and was told the Endep should take away the pain. I don't have another appointment until December, so I'm on my own with all these new drugs.

I'd like to hear what you all think about my cocktail of drugs:-

PM: 50 mg Endep
2mg Cabaser
1mg Clonazepam.

Thanks,
Gayl F.

The Endep (amitriptyline) is a tricyclic antidepressant that tends to worsen RLS. We typically avoid the use of this medication on our RLS patients.

Cabaser is a good RLS medication but if you have no RLS problems, I would not have increased the dose. Your neurologist may be trying to treat PLMS (leg kicks during sleep) that are often associated with RLS and may prevent you from sleeping longer than you wish, but without a sleep study to prove this, treating the PLMS may be incorrect.

Clonazepam is a very long acting drug that often causes daytime sleepiness. It is also somewhat addictive. Many patients can take this drug for many years but most sleep specialists prefer to use the newer non-benzodiazepine sleeping pills for patients who have insomnia. Clonazepam does not help RLS but rather promotes sleep so that the RLS is not then an issue.

Mirapex and Requip are commonly used here in the USA for both Parkinson's disease and RLS. Perhaps they are not available where you live.

Sent: Thursday, October 06, 2005 5:54 AM
Subject: Iron therapy and ferritin levels?

Although my ferritin levels are normal, do you think it would be worth taking iron for a while? If so, what dosage?

Thanks,
Neil B.

Ferritin levels may be normal (according to most labs) however we aim for levels of over 45 for RLS sufferers. If you ferritin level is below 45 then iron therapy may help. Do not take iron therapy without the supervision of your doctor.

Sent: Thursday, October 06, 2005 6:07 AM
Subject: Requip versus Clonazepam for RLS?

Hello, My doctor switched me from Requip to clonazepam (.5mg). I don't know why the switch. It does seem to do the trick most nights. Is it an acceptable choice or should I request Requip? I do notice that I feel tired in the morning. I also take at night 20 mg of citalopram (Celexa) for mild depression.

I have difficulty understanding the switch from Requip (the only current FDA approved drug for RLS) to clonazepam (not approved for RLS and can be addictive and cause daytime sleepiness). If the Requip was working and you were feeling fine then I would have stuck with this treatment.

Citalopram (Celexa) is an SSRI that tends to worsen RLS. Changing to Wellbutrin may also treat your depression and avoid worsening RLS. It is even possible that with Wellbutrin that you may need less (or even no) Requip.

Sent: Thursday, October 06, 2005 4:59 PM
Subject: Lexapro and RLS?

I am taking Lexapro 20 mg/day. I have got RLS. Went to my doctor yesterday who refused to give Requip due to me being on Lexapro. Is there an interaction between these 2 drugs?

She has given me naturopathic drugs (Magnesium, Calcium, Folic Acid, Tryptophan Plus), but I fear that these drugs are treating only muscular pain, whereas RLS is neurological? I still can't sleep and it is driving me crazy.

Jerry O.

You need to educate your doctor about RLS or if she is not willing to learn, get another doctor.

Requip does not interact with any other medications. This information can be found in the PDR (Physicians Desk Reference which every physician has in their office), especially as Requip is now FDA approved for treating RLS.

It is very likely that the Requip will resolve your RLS symptoms and let you sleep normally. We do believe that RLS is a neurological problem caused by dopamine dysfunction which is why a dopamine drug like Requip may be so effective.

All the naturopathic drugs that you have mentioned have not been shown to help RLS.

Furthermore, it is very likely that Lexapro may be worsening your RLS symptoms. Wellbutrin is one of the few RLS friendly antidepressants and may be better suited for you.

Sent: Thursday, October 06, 2005 6:34 PM
Subject: Drug interactions with Requip?

I have been taking Prozac for depression, 40 mg daily; Lamictal, 200 mg daily; and Seroquel, 25 mg occasionally to help me sleep. Recently, I was diagnosed with RLS. My doctor gave me samples of Requip starting at .25mg for 2 days, 0.5 for 5 days, and 1 mg for 7 days. I want to know if there is any interaction among these drugs.

Also one of the side effects of Requip is fainting and another is falling asleep or feeling very sleepy while doing normal activities such as driving. I fainted or (passed out) 4 times in 2 months (June and July) I am scheduled to have a Electrophysiology Study, to find out why, and also because I have an irregular heartbeat.

Requip does not interact with any other drugs. However, Prozac and Seroquel may worsen RLS.

I cannot advise you whether or not to stay on Requip. Although it is possible that your fainting spells are due to Requip, these problem usually occur at the higher doses used to treat Parkinson's disease and not at the doses that you are taking.

Sent: Friday, October 07, 2005 6:41 PM
Subject: RE: Drug interactions with Requip?

I will talk to my doctor about getting off of Seroquel. I only take it occasionally, and when I do I take 1/4 or 1/2 tablet. Before that another doctor had prescribed Trazodone to help me sleep. I also only took that occasionally instead of everyday.

I am also going to ask my doctor what I can take instead of Prozac. Any suggestions?

Trazodone is RLS friendly but it is only a weak antidepressant. It may work better at higher doses. Wellbutrin is also very RLS friendly and can even be used in combination with trazodone.

Sent: Friday, October 07, 2005 12:54 PM
Subject: Depression and RLS?

Dear Sirs: I am very depressed, crying all the time, worrying about my health, etc. I have had RLS since childhood and now in my later years it is very bad. I am on Mirapex, Neurontin and now Wellbutrin, 300 mg. the Wellbutrin does not seem to be helping me. Is there anything else. I am desperate.

First, you need to make sure that your Mirapex and Neurontin doses are optimal. If they cannot be increased any further or are not helping with further increases in dosage then you need additional types of medication.

The painkillers are the next choice. Narcotics (such as Vicodin, codeine, methadone, etc.) or the non-narcotic drug, Ultram (tramadol) are very effective treatments for RLS. If used properly, they can be very safe.

Sent: Saturday, October 08, 2005 9:03 PM
Subject: How much is too much?

I have been on Requip .25mg for about 3 years with good results. In the first year I had to go from .25 mg at bedtime to .5 mg. Then the second year my regime changed to .25 earlier in the evening to prevent the itchy crawly legs (once they start its hard to get them under control), followed by .5 mg right before bedtime. I now have had to up the .5 dosage to.75 mg, meaning I take a total of 1mg per day.

Occasionally (not often) I need a Tylenol 3 or Restoril, but again…its pretty rare at this point. How high of a dosage of Requip can I go up to before considering a holiday from the Requip? I was taking Sinemet CR for a very short while, but got the augmentation effect. In this case it just seems like I need a little more and more before bedtime to keep me still until at least 5 am. If I were to take a short break, how long should I try it and would the Tylenol 3 and Restoril be enough to get me through that period? What dosage of Requip should I restart after the holiday.

Cynde
San Diego

You may be developing augmentation with Requip. This occurs at a much slower pace compared to Sinemet and is usually not as severe. If you are contemplating a drug holiday, then you would need to be off the drug for month or so. Tylenol # 3 (Vicodin might even be a little better) and Restoril should work nicely. Ultram, a non-narcotic painkiller could be alternated or substituted for the Tylenol #3.

When restarting Requip, you should start at the .25 mg dose about 1-2 hours before bedtime and increase by .25 mg only if necessary. The maximum dose of Requip is about 4-6 mg per day at which point it is reaching a plateau effect in most patients.

Sent: Sunday, October 09, 2005 1:44 AM
Subject: Changing Mirapex due to daytime sleepiness?

I've had RLS since my open heart surgery 6 years ago. It's hard to say how bad it is compared to others. I don't have any problems with my legs kicking during the day, unless I get real tired, then my legs will try to kick. However, there's no way I can fall asleep without some sort of medicine, and my lower back will never be the same from the kicking I went through trying to find something that finally worked.

For me, 1.5 mg Mirapex, taken about 3 hours before I go to bed, keeps my legs relaxed all night and all day. For those nights I take the Mirapex too late, I use half of a 7.5 mg of hydrocodone to help me get to sleep.

I'm starting on Requip, just to see how good it is and to see if I don't get as tired during the day, as I do with Mirapex. With Mirapex, I usually have to take a quick 15 minute nap before work and another 15 minute nap at lunch, in order to feel awake at the office, but the naps do work.

So, I'd like to tell everyone to quit taking Mirapex during the day and just take a more concentrated dosage at bedtime. That way, they can get a good night's sleep and won't be as tired during the day.

Best regards,
Rich W.

Not all people who take Mirapex for RLS get sleepy in the daytime. In fact, some get insomnia problems. Mirapex should only be taken during the daytime to prevent daytime RLS symptoms. If it does then cause daytime sleepiness then other medications should be considered.

Requip may or may not cause the same sleepy problems for you.

Sent: Sunday, October 09, 2005 2:35 PM
Subject: Changing Mirapex due to daytime sleepiness?

I guess what I meant to say was that the Mirapex is probably causing me insomnia, since I'm tired a lot during the day. So, by taking a small amount of hydrocodone, I sleep a lot better and feel more awake in the morning. Even when I have some insomnia, like I said, a couple of quick naps and I feel great. I know when I first started on Mirapex, my doctor said to take the 1.5mg right at bedtime. I doubt taking it at bedtime will work for anyone, since it takes a couple of hours (without food) to get into the system and start working.

I'm 64 yrs old, 170 lbs and everyone says I look 55. I still shoot low 80s in golf, average 190 in bowling and am presently being nominated for employee volunteer of the year for a very large company, so I need to be wide awake and physically fit. The 1.5mg lasts about 12 to 16 hours, once it starts working. However, if I take the 1.5mg too soon (say 4:00 PM), then I start kicking during my next morning nap.

I started with 0.25 mg of Requip last night, along with my Mirapex. I plan on continuing to subsidize the Requip with Mirapex for a couple of days, until I work up to 0.5 mg of Requip. I haven't read anything saying I shouldn't, and I didn't have any noticeable symptoms taking both, so I'll assume it's okay.

Boy, I feel so sorry for those people who can't find something that works for their RLS. I had open-heart surgery six years ago and was taking hydrocodone for the pain. Neither me nor the doctor realized that I had picked up RLS from the operation. Then, once I tried to get off of the hydrocodone, my legs went crazy, when I tried to go to sleep. After two days of not being allowed to take the hydrocodone (since the doctor felt I may be having withdrawal symptoms), I wasn't able to do anything except try to find something to settle my legs down. I even tried drinking a quart of rum to knock me out and that didn't work.

Once I talked my doctor into giving me some hydrocodone, I slept over 24 hours straight the first night I took it, I was that worn out. Then, after searching the internet for nervous legs, I figured out I had RLS. Once I explained what I had discovered to my doctor he had me go to a neurologist. The neurologist knew exactly what it was and put me first on Serzone, which did okay but only worked about 60% of the time.

However, after a year I decided I needed something better, so the doctor put me on Mirapex and finally, I get relief about 90% of the time. Plus, with the help of hydrocodone, I get relief 100% of the time and am getting very good sleep. So, life is good, once again. Understand I only take the hydrocodone about once every 3 to 4 days or when I need extra help, like after bowling or golf. For me, exercise aggravates my RLS, just the opposite of what the medical professionals say.

I know you hear a lot of RLS stories and I just wanted to share my RLS "success" story with you. I just hope it continues. Thanks for listening.

Best regard,
Rich W.

The dose of Mirapex that you are taking is actually quite a large dose. I usually start patients on .125 mg (taken 1-2 hours before bedtime to let the dose kick in, as you have already noted), then increase slowly until the patient reaches the lowest dose that resolves the RLS problem.

Normally, if you have had a good night's sleep, then you should not need to nap the next day. Lowering the Mirapex dose so that you do not have insomnia and can sleep an adequate number of hours should hopefully eliminate the need to nap in the morning. If you are not napping in the morning, then it should not make a difference if your legs are kicking as you can then walk or do some other activity that eliminates this problem. You may also want to consider using a safe sleeping pill (Sonata, Ambien or Lunesta) to help get you to sleep quicker on those nights when falling asleep is a problem.

We do not recommend adding Requip to Mirapex as they both work on the same receptor (that means that adding Requip is like adding more Mirapex). A change to Requip from Mirapex may be helpful as the Requip may not cause as much insomnia. Remember, that Mirapex is more potent than Requip so that you need 2-3 times as many mg of Requip to equal the effect of Mirapex.

Adding hydrocodone on those nights when RLS is worse is a very reasonable therapy that may also let you keep the dose of Mirapex (or Requip) lower on those bad nights.

Sent: Sunday, October 09, 2005 6:46 PM
Subject: Changing Mirapex due to daytime sleepiness?

I've spent a lot of time working on a dosage of Mirapex that works for me and I was not aware that the 1.5mg was a high dose. However, 0.5mg didn't come close to getting me through the night, so I switched to 1.0mg. Then, I was finding that 1.0mg only did the job about 70%, so I went to 1.5mg. Now, I may not sleep well, but my legs are very comfortable while I'm awake and that's worth a lot to me. Yes, normally I have to get up sometime during the night mainly for bathroom runs and because my wife doesn't go to bed until around 1:30-2:00. Normally, needing to urinate tends to trigger my RLS, as I hear it does for others. In any case, I enjoy the hour I'm up but it does take away from my total night's sleep. So, being tired in the morning may be from taking 1.5mg of Mirapex. I'll try to cut back to 1.25 mg to see if I'm more awake in the mornings.

I know one thing. About two months ago, I took 1.5mg of Mirapex late in the evening and decided to take a full 7.5mg of codeine. Well, the next morning on the way to work I almost rear-ended a car and ended up loosing control of my car and skid into a cement wall between the lanes of the local interstate. Luckily, while I was skidding no one else hit me not did I hit anyone else. But, it was because I was tired and not focused on my driving, So yes, I may need to cut back a little.

When I said I supplemented the 0.5mg of Requip with Mirapex, I have automatically cut back on the Mirapex to 1.0mg and will cut back to 0.5 mg once I go to 1.0mg of Requip. Thanks for letting me know that they will add up in my body.

My two week sample supply of Requip only allows me 0.25 mg the first two days, then 0.5 mg for the next 5 days, then 1mg for the next 7 days, so it doesn't sound like it'll be enough to take care of my RLS. Therefore, I may go to 1mg on the 4th day, 2 mg the 5th and 6th day, then if necessary 3mg on the 6th day. That will use up all of the Requip samples.

If 3 mg works, I'll let my doctor know, so that I can get a prescription for more Requip. If not, I may consult with him and get a higher dosage to continue trying. Remember, if I go to bed and the Requip doesn't work, I can take some hydrocodone and in an hour be sleeping like a baby. I just don't want to rely on hydrocodone, if at all possible. I'll never get hooked on Hydrocodone, since I don't smoke or drink and have a lot of will power, so I won't let myself start relying on hydrocodone.

So, thanks for your information. It's greatly appreciated. I'm usually the one giving help, so it's nice to get help for a change. God bless.

Rich W.

Your plan sounds reasonable. However, your physician is supposed to give you Requip .5 mg tablets (lots of them) with your Requip starter kit so that you can titrate the dose to what is needed (to a maximum of 4 mg). You should not increase the dose faster than .5 mg per week (not your plan of 1 mg every 2 days) to avoid side effects from the medication (which occur more readily when the dose is increased too fast).

Sent: Sunday, October 09, 2005 8:34 PM
Subject: RLS worse with golfing?

I suffer from RLS primarily after a round of golf. I always walk and usually 27 holes. I am 62 years old. RLS is moderate and currently not that much of a problem. Unfortunately while playing golf I experience a similar activity in both feet and this is debilitating to my golf game. Wondering if there is any correlation.

Exercise does tend to exacerbate RLS so it is likely that walking 27 holes worsens your RLS. You could take a medication such as Requip 1-2 hours before golfing which should eliminate your problem.

Sent: Sunday, October 09, 2005 9:05 PM
Subject: Switching medications?

I have been on Mirapex for more than a year & have reached to 1 1/2 mgs. twice a day but not too successfully. I want to try Requip again & make it work. Where would you suggest I start. Once before I tried but was reluctant to go high enuf to stop the RLS. It was so miserable that I quit.

I feel I've augmented on the Mirapex & have tried adding Neurontin 300 mgs. Vicodin & Ambien at different times. None of them give me 100% relief. Thanks for the work you do. It's wonderful.

It is possible that Requip would help you but you would likely need 2-3 times the dose of Mirapex which would bring you up to a very high dose of the drug. For RLS as severe as what yours sound like, a better plan might be to take a combination of medication together. A longer acting narcotic such as methadone often works better.

You then might be able to reduce the Mirapex dose and use Ambien on nights that you need extra help to sleep. Neurontin may also be useful if you respond and do not have side effects.

Sent: Sunday, October 09, 2005 11:23 PM
Subject: Re: switching meds

I have another thought about iron intravenous (IV) therapy. My last ferritin level was low & my Dr. agreed to pursue the IV treatment but I was having epidural treatment for severe spinal stenosis so put it off. I would like to do it but have no examples of results or side effects. The stenosis is not good and certainly complicates the leg action in RLS. It would be nice to make one of them better.

Intravenous (IV) iron therapy is currently only a research based treatment. It does seem to work for most RLS sufferers and may last from 1/2 year to 1 1/2 years. However, oral iron therapy should be attempted first. As currently, the only indication (approved treatment) for IV iron is for iron deficiency anemia that cannot be corrected by oral iron therapy most doctors (your doctor is clearly an exception) would not agree to perform this therapy.

Sent: Monday, October 10, 2005 7:17 PM
Subject: Re: switching meds

Thank you for your information. I did try the Ferrous Iron which gave me such an intestinal upset that I had to stop. Only then did my Dr. consider the IV treatment. If I decide to dare it I will let you know.

Sent: Monday, October 10, 2005 5:28 AM
Subject: RLS questions?

Do we ever outgrow RLS?

What causes It?

Maximum Mirapex can be taken?

Any other modifications that can be taken without side effects of Mirapex?

Most RLS patients get worse with time but some patients to have remissions for no apparent reason.

The cause is unknown but a brain problem with dopamine is the leading hypothesis as to what is going wrong.

Mirapex usually has a plateau effect at about 2 mg three times per day (although some benefit from higher doses).

Lots of other non-dopamine RLS drugs can (are often) be taken with Mirapex.

Sent: Monday, October 10, 2005 8:45 PM
Subject: Re: RLS questions?

Last night although I took my usual dose, I woke up at 4:00 AM, so I took another 1/2 pill and have been dopey all day, very sleepy. I was told to take 3 pills of 0.5 mg at bedtime. I think my sleepiness -- sleep attacks is due to Mirapex (as stated in the article). I live near Vancouver, Washington and would love to find a doctor who specializes in RLS. Maybe with a non-dopamine RLS drug, I could get away with a lesser dose and less side effect.

Combining Mirapex with a painkiller (narcotic or Ultram) may indeed let you decrease your dose of Mirapex. However, it is probably best to increase your Mirapex dose by .125 mg every 5 days which should reduce the side effects and enable you to find the lowest effective dose (which may also limit side effects).

Sent: Thursday, October 13, 2005 10:00 PM
Subject: Re: RLS

I do need help. Yesterday I split my 3 tabs of 0.5 mg tabs. I took 1 mid-day ant the other 2 at bedtime and this morning I took 1 and another at early afternoon and saved the last for bedtime. I have been loopy all day an feeling like I overdosed, although the dosage was not increased. I felt like the Mirapex was too strong, was headachy, loopy just as though I a barbiturate. Can you understand this?

It may be that the dose of Mirapex is a little too high. It sometimes takes a few doses before the effects may hit you.

You may want to consider my previous suggestion to use the painkillers while titrating your dose of Mirapex.

Sent: Friday, October 14, 2005 12:07 AM
Subject: Re: RLS

This is exactly my feeling. How would I use them, like 1/2 a dose of Mirapex along with a painkiller. I have to check the name of the painkiller I have (for arthritis).

Painkillers for RLS do not include anti-inflammatory drugs used for arthritis. The painkillers can be used in conjunction with Mirapex (at smaller doses like 1/3 or 1/2, only trial and error can tell you the correct dose).

Sent: Saturday, October 15, 2005 12:03 AM
Subject: Re: RLS

Does RLS also occur at the back of necks? Recently I have started those symptoms there -- mild but annoying. That occurs mostly when my head is positioned to look up

RLS can occur anywhere in the body. Usually, the next body part affected after the legs are the arms, but the back, chest, neck, face, etc. can also be affected. However, moving your neck should make it go away (just like walking makes the leg RLS go away).

Sent: Monday, October 10, 2005 6:44 PM
Subject: How long can it take for Mirapex to start working?

I wondered if you have a sense of how long it might take for Mirapex to do something--I'm on 0.125 before bedtime and last night was night 4 and still no relief. My RLS starts at about 4 am and so I also wonder if maybe I need to set an alarm clock for around 3 am and take my dose then?

MJ D

Mirapex starts working in 1-3 hours. I usually recommend to increase the dose of Mirapex by .125 mg every 3-5 days (slowly to prevent side effects from occurring) until symptoms are relieved. There would be no benefit for you to set your alarm clock to wake you up 1 hour or more before your 4 am symptoms since Mirapex usually works for 8-12 hours once it becomes effective.

Sent: Tuesday, October 11, 2005 8:30 PM
Subject: RLS better with natural treatments?

Have there been any updates since 2000, as far as natural treatments for RLS? I'm getting some relief from Natural Calm (magnesium), iron and folate. Also, have you ever heard of Night-time Leg Calm? It's a wellness oil (apparently you rub it on your lower back).

Alicia W.

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

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

Sent: Thursday, October 13, 2005 6:04 PM
Subject: RLS Treatment with Requip?

My doctor just prescribed Requip, as I suggested, to take a drug holiday from Mirapex for 3 months. However, he wanted me to start Requip at .25 mg for the first 2 nights , then increase my dosage to 0.5 mg for the next few nights and finally increase to 1.0 mg from then on. Trying to follow this regimen has not allowed me to sleep for the last 4 nights.

Can I take Mirapex while I am taking Requip until the Requip begins to work? It seems that while I am trying to get off Mirapex for a while I should slowly wean myself from Mirapex as I increase my dosage of Requip. Is this permissible?

It is generally not a good idea to mix Requip with Mirapex. It is probably better just to increase your dose of Requip more quickly or use painkillers to treat any residual RLS while increasing the Requip (better idea). The reason that you may be having a problem is that Mirapex is 2-3 times more potent (on a mg basis) than Requip. You will likely need 1-1.5 mg of Requip twice a day to equal your previous dose of Mirapex.

Painkillers (such as the narcotic, Vicodin or non-narcotic, Ultram) can be very helpful while you are titrating up the dose of Requip. Another alternative is to use the painkillers (even alternating a narcotic with Ultram) for a few months while of off Mirapex without using any dopamine agonist during the drug holiday.

Sent: Friday, October 14, 2005 3:22 PM
Subject: ALL CALM works for me

I've been suffering with RLS and PLMD for several years. I waited as long as I could to seek meds, other than occasional opiate relief, but this spring I couldn't take it any more. My doctor started me on amitriptyline, Big Mistake...everything got worse. Then I went to Requip, didn't help at all. I switched to Sinemet. It worked at the original dosage for about 2 weeks, then I went to 1 1/2 times, and within 4 days was taking 2 and having constant headaches.

Last time I went in, he prescribed some really scary stuff. (I have HCV and don 't like to take anything.) I saw the add for All Calm and ordered out of desperation. The first night it worked! It's been 10 days now and it is still working perfectly. I had symptoms so bad that my whole body would tense up at night, not just legs and arms, my back and neck also. Horrible .. Now, I still can't believe it, but I'm sleeping sooo good.

I don't know, but I think because it's a mineral not a chemical drug, it might keep on working. Anybody else tried All Calm, or another magnesium citrate product?

Amitriptyline, like most other antidepressants usually worsens RLS, so it is not surprising that it caused you trouble. Requip helps about 80-90% of RLS sufferers. Are you sure that you took an adequate dose?

All Calm has been mentioned on our website several times already. Most RLS sufferers who take this substance get no relief at all and those who do seem to benefit (likely due to the placebo effect) have very short term improvement only. There are no studies or evidence to prove that it works other than the seller's claims (who benefits financially).

I have recently had to consider a new medication for my RLS. I have tried all the standards of Mirapex, Requip, Ultram and on and on with no luck. In using your Southern California RLS support booklet as my guide, I went to my MD and asked for some Inderal. After reading the information I provided, he gave me a script for 10mg Inderal tabs. The first night I tried 5mg (very difficult as the pills are so tiny) with zero success. I have upped the dose each night until last night it was 40mg and still no relief. How high do I go before I decide that Inderal is not for me? Also do I need to taper down if I decide to quit?

Thank you for providing such a wonderful source of information,
Devi

The evidence for Inderal (and other beta blockers) is very slim. I added this class of medication for completeness sake but I have not heard of many RLS cases that have benefited from these drugs.

Have you tried the narcotics? Methadone is my favorite and tends to be one of the most effective and safest narcotic for RLS.

Sent: Monday, October 17, 2005 4:22 PM
Subject: Mid-brain iron deficiency/Botox

The summer, 2003 Nightwalkers lead article suggested that autopsies indicate that RLS may be the result not of iron deficiency per se, but of inadequate delivery of iron to mid-brain cells. Is there anything new in the past two years that may help treatment for RLS? And is there anything new concerning the use of Botox injections as a possible treatment?

There is not too much that is new for treating RLS. Oral iron therapy helps some patients who initially have low serum ferritin levels. The problem is getting the iron into the brain where it is needed. This is most often difficult to accomplish which probably explains the low success rate of oral iron supplementation.

Intravenous iron therapy, on the other hand, can be very dramatic. This therapy is still somewhat experimental so it is not yet ready for prime time.

Botox has not been studied for RLS and is unlikely to be helpful.

Sent: Monday, October 17, 2005 7:30 PM
Subject: Drug holiday question.

I currently take 1.5mg of Xanax each night and have been for over 8 years with no tolerance problems. I've weaned myself down to .5mg of Xanax each night as I've tried to switch to 3mg of Lunesta; however, I just don't get the sleep I need with Lunesta. I've also tried Requip w/ Lunesta, but after 3 weeks of Requip use (1-1.5mg each night) I woke up exhausted the next day.

Anyway, I'm considering going back to my normal Xanax dose, but I feel I could take Lunesta every other weekend in an attempt to take a drug holiday from Xanax. Would taking 3mg of Lunesta every other weekend be considered a drug holiday from 1.5mg of Xanax each night or would I be wasting my time?

It is very hard to know whether taking Lunesta would be of any benefit at all with respect to taking drug holidays from Xanax. There is no real literature on the benefits of taking drug holidays but patients who use drugs like Xanax on a more irregular basis do not get addicted or tolerant to these medications.

As you have been taking Xanax for 8 years without problems (without drug holidays) it is very possible that you could continue this indefinitely. However, there is a chance that taking drug holidays from Xanax by using Lunesta may indeed prevent addiction problem. If the downside of doing these drug holidays is not that great (meaning that you sleep is fairly reasonable) then the drug holidays may be a sensible choice.

Sent: Wednesday, October 19, 2005 4:36 AM
Subject: Iron/vitamin studies and RLS

I have suffered from this disease for years. I had a severe case when I was pregnant and I was in and out of hospital with it. Thank goodness that when I had my beautiful baby, the restless legs became mild again. I had a short spurt when they were bad and I had my iron levels tested through a sleep specialist.

My ferritin levels 22 but my saturation was 10. This was the first time anyone had tested saturation levels. I had some iron injections until my ferritin levels reached around 40. Its 2 months later and my restless legs are playing up again. I am presently breast feeding. A few questions:

1) What ferritin levels do you recommend RLS sufferers to be at? Would there be a risk of hemochromatosis staying at these levels?
2) Should my G.P. be asking to test for saturation levels, B12, Vitamin C at the same time instead of just ferritin?
3) Is iron injections recommended/safe during breast feeding?

Kind regards,
Tina

1) We try to get the ferritin levels above the 45-50 range. As long as it stays slightly above those levels hemochromatosis (iron overload) should not be a problem.

2) The ferritin level is the most sensitive test for iron deficiency and correlates best with RLS symptoms.

3) Iron injections should be safe during breast feeding but it is always best to double check with your pediatrician.

Sent: Friday, October 21, 2005 5:59 AM
Subject: RLS

As with other RLS sufferers, have been fighting this for years. However recently I looked into essential oils and have found excellent relief using basil oil on my lets at bedtime. This does seem to manage the pain and I usually can sleep through the night.

Deloris M.

I have moderate RLS and mild bipolar syndrome (bipolar II). I'm also extremely vulnerable to antidepressant-induced hypomania. Last spring my doctor switched me from Permax to Requip, after I developed symptoms of pulmonary fibrosis. Almost immediately, I went into a medication-induced hypomania just like what I had experienced many times on antidepressants. I was bouncing off the walls.

Now I'm scared to try any of the other dopamine agonists. I'm on 3200 mg of Neurontin, which helps some with the RLS, but still leaves me very sleepy during the day. Unfortunately, sleeping poorly makes my bipolar symptoms worse. I'm on lithium and valproic acid for the bipolar syndrome.

Are there dopamine agonists that are different enough from Requip that I would be fairly safe in trying them? Or are there anticonvulsants that would be more effective than Neurontin? I had no problems with the Permax (except for the fibrosis, of course).

It is strange that Permax did not bother you as it acts on many of the same receptors as does Requip. The only other non-ergot derived dopamine agonist (the group that does not cause fibrosis) is Mirapex. However, it acts on virtually the same dopamine receptors as Requip. Although there is a small chance that it would not cause a hypomanic episode similar to Requip, the odds are good that it will.

I would suggest adding Ultram and/or the narcotics to treat your RLS. They usually do not make patients drowsy and should not interact with your other medications and problems. You may also be able to decrease the Neurontin so that it does not make you as sleepy (a very common side effect).

Sent: Tuesday, October 25, 2005 8:19 AM
Subject: RLS better with Tylenol #3?

I am a 47 year old female and have had RLS all my adult life. Only about 5 years ago did I finally realize it had a name and that there were other sufferers. I thought I was alone. My doctor tried some of the regularly prescribed meds without much luck. Then about 1 1/2 years ago I had surgery and was sent home with Tylenol 3 for pain. Very quickly I realized it had completely gotten rid of my symptoms.

I talked it over with my doctor and he agreed to let me have it on a permanent basis. I now take one pill 30 minutes before bedtime and have 100% relief. It's been a year and a half like I said and I don't see any need for a stronger dose yet. I'm not worried about addiction because I'm never going to want to stop taking the drug anyway. I certainly hope everyone can find some relief because life is miserably without sleep.

Tracy S.

Tylenol with codeine #3, like most other narcotics is a very potent RLS relieving medication. The chances of getting addicted with just one pill per day are almost negligible. However, when tolerance and addiction occur (after taking much higher daily doses in susceptible individuals), higher and higher doses of the medication are needed and become less (and often not effective at all) effective. That is the concern about addiction (not the fact that you then need the medication forever).

Requip would still be a good choice as a daily RLS medication as it works very well and has no addictive or tolerance potential. It is considered the drug of choice for daily RLS.

Sent: Wednesday, October 26, 2005 11:59 AM
Subject: Requip causing eye problems?

I started taking Requip approximately two months ago, which seems to work well for my RLS. About that time though, my eyes have started to bother me, (I have had glaucoma and cataract surgery on my left eye, which is especially painful) with symptoms of dryness, pain, and irritation.

Do you think this may be caused by this medication? If so, can you recommend a drug that will effectively treat RLS without affecting my eyes?

There are some cases of eye irritation noted with Requip. Pain and dryness are even more uncommon. The only way to tell would be to go off the drug and see if the symptoms go away (then restart the drug and see if they come back). Mirapex is a good choice to replace Requip.

Hello. I have been taking Mirapex for RLS for about three years and up until now it has controlled my symptoms. I take an average of 1 1/2 to 2 of the .125 mg pills, starting at about 7 p.m. This gets me through the night without waking up with RLS. But suddenly, I'm getting RLS in the middle of the afternoon.

I know I'm taking a small dose and that the usual procedure would just be to increase the dose. But I suffer from debilitating Chronic Fatigue Syndrome brought on by a viral infection of four years ago. (This diagnosis is unconnected to the RLS which I've had for over 10 years.) Even the small doses of Mirapex make me drowsy and foggy so I'm reluctant to increase the dose in the afternoon since I'm already barely able to function.

It sounds as if you are getting augmentation from the Mirapex. Augmentation is a worsening of RLS after starting a dopamine type drug. The RLS usually starts occurring at least 2 hours earlier in the day, the symptoms may be more intense, you may not be able to sit as long and the symptoms may even start appearing in the arms.

Normally, we would suggest that you take an extra earlier dose of Mirapex but in your case that is not feasible. Therefore, you might ask your doctor to prescribe Ultram or a mild narcotic (such as Darvon) to be taken about an hour before your symptoms occur in the afternoon.

Sent: Wednesday, October 26, 2005 7:05 PM
Subject: Re: Mirapex question

I appreciate that you got back to me so soon. Unfortunately, I can't take Ultram or Darvon. They increase the CFS symptoms. I did wonder if I should try switching to Requip. Is that what people do when one medication causes augmentation?

Toni B.

Sometimes changing to Requip may help. As the augmentation is due to the dopamine class of medication, it is possible that Requip may also cause this problem. You can only tell by trying it.

Sent: Thursday, October 27, 2005 1:40 PM
Subject: Groin and leg pain with RLS?

I have had problems with RLS for 14 years. I took Klonopin for many years and then it quit working. I also have fibromyalgia and am wondering if anybody with RLS has severe pain in their legs and knotted muscles along their groin area when their RLS is aggravated am not having any luck with Requip. It helps some at night, but I suffer as soon as I try to sit down during the day and cannot usually take it soon enough to not get the symptoms before bed.

I also have pain in my hip area and now numbness in one leg and severe numbness/pain in my arms at night. I took Mirapex for a year and then became immune to it. I am going back on Sinemet now. I had a severe reaction when I was pregnant to Compazine and wonder if this caused all my problems.

Also I can't take cold medicine or some pain relievers as it makes my RLS worse. I went off my anti-depressants because of all the weight gain, but feel exhausted and helpless! I did try Cymbalta and that did make my arms feel better at night but I hated the side effects it caused!

Requip should work well for your RLS if you take it correctly. You may need 2 or 3 doses per day (spread out) to relieve your symptoms. Generally, the Requip should be taken 1-3 hours before your RLS symptoms typically begin. If you wait too long before taking the drug, it may not work very well.

You may be having nerve type pain associated with your RLS. If the Requip does not help this pain, Neurontin is a good choice to add to your medication. Knotted muscles are not part of RLS but may be due to muscle spasms.

Compazine (and most all other anti-nausea medication), antihistamines (which includes most of the cold medication) and antidepressants tend to worsen RLS. Wellbutrin is a good antidepressant that does not worsen RLS.

Most all RLS patients should be able to get relief with proper treatment.

Sent: Friday, October 28, 2005 1:54 AM
Subject: Tolerance & long-term use of pain meds

I have taken Ultram for 7 years now. At times I thought it had stopped working for me but it was just my RLS having spells of worsening; it would settle down and I would realize the Ultram was still working ok. I have been on the same dose for the entire 7 years, except for one time when my doctor added one more pill to my dosage. I now take 250 mg a day. It has been this amount for quite a long time.

Something different is going on now. For a while now, I've noticed my RLS is not being controlled as well after the Am dose of Ultram (which is the smaller dose, 2 pills). I always had total relief before. The past 2 weeks, I have been waking up feeling so miserable mentally- all I can think about is waiting for 6:00 so I can take my pills. This morning, I was so nervous and anxious that I just took them an hour early. I have never abused my medication.

I had never done drug holidays until a couple years ago. I mentioned them to my doctor. She wrote me a script for Vicodin and I just did them when I thought of it. We never sat down and discussed how often or how long they should be. I have a new doctor now. I'm afraid to tell him about this because he might take me off the Ultram.

I can't take any of the Parkinson drugs for my daytime RLS because of side effects. Ultram is the only thing that has enabled me to lead a normal life. Is there anything I can do? Since I've apparently developed or am developing a tolerance for Ultram, is it too late to alternate pain meds? Please, do you have any suggestions?

It does sound as if you are developing some tolerance to Ultram. Your dose of Ultram is much higher than most RLS patients. Most take only 2-4 per day and never more than 2 pills at a time. I would not try to increase your dose at this time.

You may want to switch to Vicodin for about 2 weeks then alternate Vicodin and Ultram (every 3-4 days) and see if that works.

Sent: Friday, October 28, 2005 8:20 AM
Subject: Tolerance and long term pain meds

I have severe RLS 24/7 for which I take Ultram during the day. I take Parkinson drugs for the nighttime only, because of the side effects they cause me and they don't work that well for me. I've taken Ultram for 8 years now, and stayed at the same dose with one increase- my doctor added an extra pill about 1 1/2 years ago so I take a total of 250mg a day.

There have been times when I thought I was becoming tolerant to the Ultram because it seemed like the Ultram wasn't controlling my symptoms as well. But these times would pass and I realized my RLS was just taking a bad spell. The Ultram would go back to working alright. Something is going on now that I'm afraid really is tolerance because it isn't going away.

My morning dose is not working as well and not lasting as long- it has always lasted 7 hours, now it lasts 6 hours. I take my second dose at 2:00 in the afternoon. I wake up at 5:00 in the morning and I feel very anxious , nervous. I took my morning dose an hour early. I have anxiety disorder which isn't helping but I think this is coming from the Ultram. I'm afraid to tell my doctor in case he thinks I've become addicted and takes me off of them. I'm not taking extra.

Ultram is the only drug that enables me to lead a normal life. My doctor gave me Vicodin for drug holidays which I started a couple years ago. I would do them sometimes once a month, sometimes twice a month. It was never stressed as particularly important. If this is tolerance, is there any way to halt it by using more frequent drug holidays. If so, how long and how often.

Or if tolerance has already developed, is it too late to do anything about it. I always hated using the Vicodin because it only controlled my symptoms for 41/2- 5 hours.

If Vicodin last only 4-5 hours (which is not unusual), switching to methadone (which usually lasts 6-10 hours) may be very helpful if you can get your doctor to prescribe it.

Sent: Sunday, October 30, 2005 9:17 AM
Subject: Mirapex and flu vaccine

I am wondering if there is a drug reaction between getting the flu vaccine and taking Mirapex. Someone told me that they took Mirapex and they couldn't get the flu shot because it would paralyze them. Could you please help me in finding an answer to this?

There is no information available on any problem or reaction between Mirapex and the flu vaccine. In very rare instances flu vaccines have been associated with producing a paralytic problem, however this has nothing to do with Mirapex.

Sent: Sunday, October 30, 2005 9:50 AM
Subject: Please would you help?!

I was so grateful to find this website; it's given me a lot of insight into what my husband is going through and I thank you for providing this forum. I very much hope you will be able to answer a few questions for me.

My 36-year-old husband was diagnosed with RLS/PLM. He had been having trouble sleeping for years, and finally had a sleep study done last fall. It was hard for him to fall asleep because of his legs feeling jumpy, and when he did sleep, well, the doctor in Salt Lake City (the closest large city to where we live in WY) who evaluated his study said it was one of the worst he had seen with regards to the amount of arousals--they wouldn't usually wake up my husband, but they would rouse him enough so he wasn't getting any deeper sleep. His doctor immediately put him on clonazepam, starting at 0.5 mg but adjusted to 1.0 mg. What a difference! For the first time in years he was sleeping through the night, didn't dread going to bed, and was actually dreaming! His blood pressure, which had been borderline high, lowered to well within normal limits and the headaches he had been having every day also disappeared. The only thing he didn't like about the clonazepam was the fact that he felt groggy the next day, but that seemed a small price to pay.

However, this fall the clonazepam has seemed to lose its effectiveness. My husband even tried upping the dose to 2 mg without it helping. Nine days ago he went to a new doctor (his previous doctor is no longer in the area) who prescribed Requip, starting with a 0.5 mg dose. He took that for 6 days with no help for his symptoms, in fact they seemed to worsen. He returned to his doctor who told him to up the dose of Requip, so for 2 nights he took 1 mg and last night took 1.5. He says it's getting harder to sleep. At this last visit the doctor also prescribed Nasonex and a Z-pak because of a sinus infection, and Lunesta 2.0 mg to help him sleep, which has not been helping at all. His symptoms continue to worsen.

He can only fall asleep in the early morning, usually around 4:00, and then he doesn't sleep very well at all. He's also told me that he feels that he has become hypersensitive to touch and sound since taking Requip. I'm very concerned about the lack of sound sleep he's getting, as he has to be up in the mornings for his job. Another factor is that he usually becomes somewhat depressed from Sept-Nov, after which it seems to lift. This year will be an especially tough year for him as he is planning to leave his job with the family company (much to their disapproval) and pursue his other dreams, so I am especially concerned that he be getting enough sleep to deal with each day's challenges.

I've tried to give you as good a history as possible in the hopes that you might answer some questions for me, as I don't know that his new doctor has had that much experience with RLS/PLMD and I thought it would be helpful to have some other options to discuss with her.

I have several questions:

1. I have read letters about clonazepam withdrawal on this site, and also about augmentation with regards to Requip, would you have any idea which this was (how long can clonazepam withdrawal last?), and if so, what would be the next logical step? Would you continue with the Requip and up the dose? My husband also has spells of lightheadedness upon getting up, which he has always been prone to, but seem to be occurring more frequently with the Requip, and I worry about increasing the dose due to that and to his hypersensitiveness?

2. I am wondering if the worsening of my husband's symptoms could have been due to clonazepam withdrawal at first, then some interaction with the sinus medications after he started taking those?

3. Since the clonazepam had worked for so long, would you recommend another drug in the same class or even going back to clonazepam--would it have a better chance of working again after being off it for awhile? I know from your responses that you think Requip is usually a better choice than clonazepam, but so far it hasn't worked for my husband.

Again, thank you so much for this site,
Krishna

The sinus medications, Nasonex (a steroid nasal spray) and Z-pak (an antibiotic) have no effect on RLS. Older, sedating antihistamines do tend to worsen RLS and they are present in most over the counter cold remedies.

Clonazepam tend to cause daytime sleepiness, tolerance and withdrawal symptoms (all of which your husband has already noticed and the reasons that I do not like using the drug). It has been a difficult to test for Requip and Lunesta while in withdrawal from clonazepam (which can have a horrible withdrawal problem including insomnia, anxiety and even seizures).

What I would suggest is that your husband get a prescription of a narcotic (Vicodin, methadone) which he can even alternate with Ultram to be taken 1 hour before bed. Lunesta (or even Ambien) may then work well to help him get to sleep. It may take a week or two to completely get the clonazepam and its withdrawal effects out of his system. Usually we taper the clonazepam off over 4 weeks or so.

You may then want to retry Requip (or possibly Mirapex) and see if you can then decrease or eliminate the painkillers. I would stay away from clonazepam in the future.

Sent: Monday, October 31, 2005 8:09 AM
Subject: RLS causing leg twitching?

I have RLS. Started out taking .25 mg of Mirapex. About a two months ago I developed a twitching, tingling, itchy feeling on the outside of my right foot. My doctor took me off the Mirapex that was working for the RLS but not for the twitching, etc feeling in my foot and put me on Neurontin, starting out at 300 mg up to 1800 mg at bedtime.

My problem is I am so tired during the day I can not focus and I have no energy and still have a little of the twitching, etc in my foot during the day but it is manageable. My question is so I take Mirapex together with the Neurontin? Decrease the Neurontin? I have no clue what to do. I had a nerve test but have not gotten the results back. I just want to have some energy during the day.

Thanks for listening. Just not sure where to go or what to do.

Pam

The twitching does not sound as if it is due to RLS. The tingling and itchy feeling may be due to a neuropathy (nerve condition) that may or may not be associated with RLS (and even if it is, the treatment is the same anyway).

Neurontin is the treatment of choice for neuropathy pain or discomfort. However, at effective doses, sleepiness or daytime fatigue tends to be a problem in many. The only choice that you have is to decrease the dose or change to another anti-convulsant medication that may or may not also cause sedation. Often, patients with this problem are between a rock and a hard place.

Sent: Tuesday, November 01, 2005 11:43 AM
Subject: RLS and IBS (Irritable Bowel Syndrome)

I've had RLS since October of 2000 and off and on IBS since 1999 but it became severe in 2003. I am clinically depressed and have been under treatment since 2002. Is there any relationship between any of these three? I'm mostly interested, however, in RLS and IBS since they both involve neural stimuli in some way or another.

There is no known relationship between RLS and IBS. Many RLS patients are depressed (and anxious) when they experience significant RLS symptoms that are disturbing their life and sleep and not being treated.

Sent: Tuesday, November 01, 2005 9:36 PM
Subject: RLS & RSD (Reflex Sympathetic Dystrophy)

In 1997, Eight years ago, I was in bad car wreck and had to have facial reconstruction. I was left with a lot of facial pain. I didn't treat the pain at the time because I wanted a 3rd child. 1999 I kicked the bath tub and got RSD in my left foot. Four blocks later I was ok. 2001 3rd Pregnancy. Had trouble sleeping. Between 1999 and 2004 I stayed at home, not exercising or being to active because of the pain. 2004 Not able to sleep.

May 2005 Kicked a ball and got RSD in right foot. Four blocks later I was ok. June 2005 Was told I needed surgery for Carpal Tunnel Syndrome, but my doctor will touch me because of the RSD. Oct. 2005 I went to see a sleep doctor and he said I had RLS. I was great to know that my legs were hurting for a reason. They have hurt for years and years.

Feb 2005 I have been trying to stop the pain. My research told me that RSD was something to do with the brain not getting enough rest and therefore it sends mixed messages. Now with RLS the research tells me that my brain keeps sending messages to kick, hurt, kick, etc... I've been put on several different kinds of medications and I'm feeling a little better. I still have trouble going to sleep, my arms and legs kick during the day and I'm always tired.

Over the last year I have felt very bad. I even thought I was loosing my mind. The doctors started me on Gabapentin and my dose got up to 2700 mg. I changed to Lyrica 150 mg and I like it much better. Adderall 30 mg to keep me awake, but I've stopped taking it. Ambien 10 mg It gets me to sleep, but doesn't keep me a sleep. Cymbalta 60 mg to help keep the nerve paths open to my feet Clonazepam 1 mg for RLS. From 1999 until Feb 2005 I took an average of 1600 mg of Advil per day.

Is there any research that shows RLS and RSD being related or connected in some way?

There is no known relationship between RLS and RSD. Requip or Mirapex may be helpful for your RLS although Neurontin and Lyrica are also beneficial.

Sent: Wednesday, November 02, 2005 11:00 PM
Subject: Problems with Sinemet?

I have been a long time sufferer of RLS for over years. It all began shortly after I became pregnant with my firstborn forty years ago. I do remember going to the movies and long trips, and my legs worsened as the driving went on. Before she was born, I would lie in my living room floor, out of my hubbies view and lift my legs in the air and making circular motions hoping I would relieve it, but to know avail. I have tried hot baths, walking, running, heating pads (which burn my legs).

I was twenty when all this and today I am sixty-four, and sometimes I feel so angry at night when I cannot sleep and all I can do walk, take bath, which scorch my legs. My doctor put me on clonazepam at first, and later Sinemet, and after the Sinemet 25/100,quit working, he gave me equip 0.5 mg. I took this for about a week, but then it did a complete reversal on me and came out working exactly the opposite, and back I went to my old-faithful, my tub!

Tonight I went to the emergency room, not sure what they could do for me, but I was willing to listen. A young doctor came in and had never heard of RLS, and with my wisdom I did my best to inform him of my last forty years. At first he wanted to give me quinine. Been there, done that, and was terribly sick with this. I have a feeling he though I was a hypochondriac!

This young doctor called my previous physician and once again prescribed Clonazepam. I am home now; Took the designated dosage, and my legs are back as well as my lower arms! Please help me... I am not in the best state of mind tonight. Not that I would do anything harmful, but this is beyond my control.

Janice K. W.

It sounds as if you may be getting problem with most of the usual RLS drugs. Clonazepam helps some patients sleep but generally does not really improve RLS symptoms and can be quite addictive.

At this point, you may benefit from a painkiller (a narcotic such as Vicodin or non-narcotic such as Ultram) with or without Neurontin. If your family doctor feels comfortable treating you with these medications then have him read up on how to use them (the info is on our site). If not, have him refer you to an RLS specialist. You should be able to get full, sustained relief.

Sent: Thursday, November 03, 2005 10:06 AM
Subject: Jerks scaring me in bed?

The article I was reading was about RLS but I am trying to find some information on whole body jerks, that hurt and scare me into wakefulness, and at times a feeling of falling. I do have the RLS but am just finding out there was a name for what I was going through with my legs.

If you could find information about a shoulder jerking here or the whole body at times, could you let me know? Also sometimes feeling of falling comes right after the abrupt body jerk.

If these jerks occur only once or twice a night (more or less) than what you are experiencing are called hypnic jerks (or in more common language, sleep starts). They occur in stage 1 sleep (the stage of sleep that is very light such that if you get woken up, you are not sure if you were really sleeping or just drifting off to sleep).

They are very common occurrences that are normal. There is nothing to worry about or anything special that you can (or should) do about them.

Sent: Saturday, November 05, 2005 4:33 PM
Subject: RLS complications?

I just discovered your site and am thrilled that I may be able to get some advice that takes into account my circumstances!

I have obstructive sleep apnea, ADD, and RLS, and have had three back surgeries (yet, amazingly, am physically active, not overweight and in generally good health). All of these, however, affect my ability to get a good night's sleep. Exercise, especially yoga, is vital for me in terms of relieving stress and helping me feel sleepy, eventually.

I tried surgeries and various oral devices for my apnea, and now have a tongue-retaining oral device which is comfortable and works 100% on that issue. I was taking Adderall (amphetamine) for years for my ADD and Klonopin for my RLS. It seemed to get to the point that I needed more Adderall to offset the morning sleepiness from the Klonopin, and more Klonopin to offset the Adderall (especially if I took Adderall any time other than first thing in the morning.) Knowing that both are addictive scared me, needless to say.

I switched to Provigil a few months ago for my ADD, which seems to be working. Klonopin has always worked very well for me, but I suspect I am a bit addicted to it (I currently take 1.5 to 2 mg a night, which I don't believe is an abnormally high dose, but absolutely can't sleep without it). I tried Mirapex for my RLS a few times, but it seemed to interfere with my ability to fall asleep.

I am now taking 1.5 to 2 mg Klonopin at bedtime, which represents an incremental increase over a number of years, but even though the RLS doesn't keep me awake at those levels, I have difficulty falling asleep and I wake up drowsy. Sometimes I take temazepam or Ambien to help me sleep.

Could my lack of success with Mirapex be because of "withdrawal" from the Klonopin, rather than the ineffectualness of Mirapex in my case? I tried .125 mg, then .250 mg, but finally needed the Klonopin to sleep. It seemed that the Mirapex actually acted as a stimulant?

If I am dependent on Klonopin, can I try both drugs (Klonopin and Mirapex) simultaneously and wean myself off the Klonopin as I wean myself onto the Mirapex? Is Requip any different from Mirapex?

Are there drugs in the benzodiazepine family that work as well as Klonopin but which break down faster, without any other tradeoffs? Even if I don't stop using Klonopin, there are times when I would like to nap, or sleep on a plane, without suffering the longer term effects of Klonopin.

I think that my ADD as well as my RLS both tie into dopamine uptake, as do many of the meds for both. Should the goal be dopamine uptake inhibition during the daytime in a way that doesn't make me sleepy, while doing the same at night in a way that does? I greatly appreciate any help you can offer so that my physician can help prescribe the safest and most effectual mix for the long term!

Klonopin is a very addicting drug (for some patients) and dependence and tolerance (in addition to daytime sedation) are frequent problems limiting its use. It is very likely that if you stopped (or even reduced) the Klonopin suddenly that it might seem as if the Mirapex was causing insomnia (which it can do at times). Klonopin should be reduced slowly (over weeks) and you can start Mirapex while on Klonopin. It might be helpful to use Ambien (a non-benzodiazepine drug) while tapering off of Klonopin. Temazepam, another benzodiazepine, should not be used as it works on the same receptors as Klonopin.

Mirapex and Requip are chemically different but work on the same dopamine receptors.

Sent: Saturday, November 05, 2005 7:46 PM
Subject: Requip or Mirapex for PLMS?

I am a middle aged woman with fibro and RLS. I currently take 1 mg of Mirapex for the RLS and have taken Mirapex for a couple of years. I had my first sleep study recently, and it showed only 5 PLMS per hour, but over 100 awakenings throughout the night. It also showed sleep hypopnea. I will start on a CPAP this coming week when I get the machine. In the meantime, my doctor is concerned that the Mirapex is not controlling the PLMS well enough and is having me switch to Requip. I started the switch last week, but my RLS is getting worse as I decrease the Mirapex and slowly increase the Requip. I haven't slept all week and I am exhausted. So I have three questions.

1. Does Requip help PLMD any better than Mirapex? I was under the impression that they did about the same.
2. I have heard of people switching between Mirapex and Requip for drug holidays. If that is so, do I have to slowly titrate the Requip while I taper the Mirapex? Can't I just stop the Mirapex and take the equivalent dose of Requip (about twice as much, I think you said).
3. Should I even be changing my meds when I haven't started the CPAP yet? It seems that I remember hearing that sleep apnea/hypopnea can cause arousals and awakenings. I didn't have that many PLMS as I understand it, so why would my doctor want me to change my meds AND start the CPAP at the same time? I will call him and ask for an appointment based on what you tell me.

Treating PLMS is very controversial in the first place (unless they are so vigorous that the person can't fall asleep due to the leg kicks). Unless the PLMS are causing many (like over 25/hour) arousals (or preventing sleep as noted above), we consider them a curiosity rather than a medical problem. Even when there are more than 25 PLM arousals per hour, many sleep specialists would not treat them.

In this case, with 5 PLM/hour, no sleep specialist would consider treating. The 100 awakenings (likely really arousals which are changes from deep sleep to light sleep but not actual awakenings) may be due to other problems (snore arousals, persistent hypopnea, etc) and may have little or nothing to with PLMS (and even if they do, they do not sound clinically significant).

There are no studies to compare, but Requip and Mirapex likely help PLMS equally (at equally potent doses which is probably 2-4 times greater for Mirapex compared to Requip). Switching between Mirapex and Requip is only for RLS and there are no studies discussing this issue (experts like me do this from time to time but only based on RLS symptoms). There should be no reason to do this for PLMS.

Sent: Tuesday, November 08, 2005 11:52 AM
Subject: RLS and serum ferritin levels?

I have RLS and take .75 mg of Mirapex nightly for this. Recently, my neurologist tested my ferritin level and found it to be what she calls “low” (21). She then put me on 325 mg of iron with 250mg of Vitamin C twice a day. I started worrying about why I was low on iron, so I asked to have my test results faxed to my primary physician. My primary said he did not feel I was low on iron, that I was in “normal” range. I am confused as to why the two have such differing opinions?

I have been taking the iron for about 3 weeks now and have noticed NO changes at all. I realize it will take approx. 2 months to get my levels up, but shouldn’t I be feeling some of the benefits sooner than that? I have been extremely fatigued lately and my depression (I take 20 mg of Prozac daily for this) has been flaring up. I am very active and healthy as I have been in a nutritional and exercise weight loss program for over 1½ years now and have lost 76 lbs. I do 6-7cardio sessions per/week and 3-4 strength training sessions. Why am I so tired??

I strongly feel that I should have more testing to see what is going on, but hey, I am not the doctor…can you share your thoughts on my situation?

Ann S.

The serum ferritin level is a much more sensitive test than the serum iron test as it tests for iron stores rather than just the iron present in the blood. Although your serum ferritin level of 21 is considered normal by most testing laboratories, for RLS purposes, we try to get the serum ferritin levels about 45-50.

It is often tough to increase ferritin levels with oral iron and even when we do raise the level to above 45, RLS symptoms do not always improve. Intravenous iron (still somewhat experimental) generally has a dramatic effect on both iron/ferritin levels and on improving RLS.

Fatigue is a very general problem that can have a myriad of causes. It is difficult to advise you on that problem over the internet.

Sent: Tuesday, November 08, 2005 7:00 AM
Subject: Mirapex and twitching at night

I have been taking Mirapex (.125 mg at bedtime) for several months. It seems to do a pretty good job of controlling my PLM and mild RLS symptoms, but now a new twitching problem has arisen to interfere with my sleep. About half way through the night I will wake up and not be able to get back to sleep because of non-periodic muscle twitches in various parts of my body. It can be in an arm, a hand, a leg, a foot, or my abdomen.

The twitches tend to occur just as I am about to drift off to sleep, which is very frustrating. The abdominal twitches are the strongest, but all of them are enough to interrupt the process of dropping off to sleep. These are not the periodic twitches of PLM. They occur just once as I am about to fall asleep and do not recur periodically. There are no RLS-like sensations associated with these twitches either. It is a maddening thing. I am tired and my brain keeps trying to fall asleep, but my body keeps jerking me awake every time I am on the threshold of sleep.

Could this be a side effect of the Mirapex? Or does it mean that my dose of Mirapex is too low? I am trying to stick with the lowest effective dose; for a while I was even cutting the .125 mg tablets in half. Now it takes a whole .125 mg tablet to handle the PLM/RLS symptoms in my legs, and if I try to go back to a half-tablet dose the symptoms return.

Any insight or information into the possible cause and solutions for these non-PLM twitches would be greatly appreciated. (By the way, I also take melatonin at bedtime to help me sleep. I'm not on any other prescription meds.)

Thank you,
Herb S.

I cannot be sure that the twitches are not PLM related however, they do sound more like hypnic jerks. These hypnic jerks occur in the transition stage (stage 1 sleep) from wake to deeper sleep (stage 2 sleep). They should not be related to Mirapex or any other drug.

We generally do not treat them and there is not known about why they occur or what to do about them. They are very common and are normally more an occasional nuisance rather than a true medical problem.

Sent: Wednesday, November 09, 2005 6:18 PM
Subject: RLS and what should I do?

I have what I think is restless legs. I am 33 years old and have has it since I was about4 or 5. I can remember waking in the middle of the night . Back then my mom called it growing pains. I didn’t go to the doctor for it. My mom used to put rubbing alcohol on them. I think it did work sometimes. Maybe the cooling effect. I am still living with this today.

I didn’t know there were specific medications for this. I have mentioned to my doctor and orthopedic surgeon and endocrinologist that I had this and have been complaining about fatigue for about 15 years. They have given me antidepressants. I am not depressed about anything except being totally exhausted and no one doing anything about it.

They have tested every organ in my body. I also have pain under my my left ribs which is being put off as colon spasms. I have been diagnosed with IBS. I took Ultram for a shoulder injury and it helped for my RLS, so of course I asked my family doctor for a prescription. It doesn’t seem to be helping. This not only bothers me at night but anytime I try to sit down and relax.

Should I be going to a neurologist? I have never been to one of them. My doctor did do an MRI to see if I had MS but he said it looked fine. My grandfather had MS from the time he was 30 until he died a few months before he was 90.

Restless in NJ

You can ask your family doctor for Requip (which is now FDA approved for RLS) and that should take care of your problem. Ultram can be used when the RLS comes up unexpectedly. If your family doctor will not give you Requip, then get a referral to a neurologist or sleep specialist.

Sent: Wednesday, November 09, 2005 11:00 PM
Subject: Does REQUIP cause neck pain?

I am taking 1 mg Requip, and have been for about a month. My dosage was titrated up from .25 over the course of two weeks. Is it a coincidence that I am having awful neck pain? I do have arthritis in my neck, and neck problems are not unusual for me. But this sure is. Physical therapy, drugs, nothing seems to interrupt this pain thing in my neck since I started using Requip.

I've been reading the drug company's data all night, and it does appear that at least some of their studies list neck pain, and even torticollis as adverse events. But my neurologist kind of fluffed it off and scheduled me for an MRI (which, by the way I would LOVE to get out of, but that's another story.)

Anyone got the scoop on Requip and neck pain? (or exacerbation of arthritic pain) ANYTHING will be appreciated. Thanks.

Annie

There is no known link of Requip and neck pain. Certainly, anything is possible so the only way to know would be to stop the Requip for a few days to a week and see if the neck pain goes away.

Sent: Wednesday, November 09, 2005 11:47 PM
Subject: RLS and Involuntary Leg Movement

Foremost, I want to say your website has been most informative for family members of RLS sufferers to comprehend the magnitude of discomfort RLS sufferers actually experience.

My father has RLS for over 20 years and has suffered from the "crawly leg" feeling at night, which has severely disrupted his quality of sleep.

He has tried Sinemet 25mg, Cabaser 0.25mg, Valium 2mg, and Normison (temazepam or Restoril) 20mg. Sinemet and Cabaser were of no use and he mainly relies on taking 1 tablet of Normison when he goes to bed, and if he wakes up during the night with RLS, he takes another 1 to 2 tablets of Valium.

Recently, he tried Requip 0.25mg. After one to two weeks of Requip (i.e. 1 tablet of Requip when he goes to bed), his symptoms has changed. He is now experiencing from involuntary leg movement. He describes it as an electrical charge which travels from his thigh to his knees. Once it reaches his knees, the charge explodes into a highly energetic knee jerk. The benefit of the knee jerk is that it releases the "crawly leg" feeling.

However, the involuntary movement occurs right at the point when his wants to fall asleep, causing him to wake up. This occurs again when he wakes up during the night, or even during the day when he wants to take a nap.

He has since stopped taking Requip and resumed back to the Normison and Valium combination. The involuntary movement is still present and he still has the "crawly leg" feeling at night. Interestingly, he is now able to have the same hours of sleep as before trying Requip, but he feels more tired during the day!

Thank you for any help possible on the involuntary leg movement, "crawly leg" feeling and tiredness.

Maria T.

It sounds as if he is having PLM (periodic limb movements) with his RLS. Usually Requip help this problem and he may just need a higher dose (this should be increased slowly under his doctor's supervision). Hopefully, this may resolve his problem. Temazepam (Normison) and Valium generally are not used together as they are both benzodiazepines.

Sent: Thursday, November 10, 2005 7:40 AM
Subject: A pain med question and another disorder along with RLS?

I've had RLS since I was a child (currently 32, diagnosed officially in August). It progressed from maybe 2-3 nights a month with leg pain to almost daily earlier this year. Really deep aching leg pains. Then when there wasn't the leg pain I would notice the uncomfortable sensations. This change prompted my visit to the neurologist. She went through a few meds but after the sleep study confirmed leg movements, started me on Requip with the starter pack and then just a prescription.

I have my 3 month follow up later this month. I am happy to report that the leg pain is back to it's 2-3 times a month occurrence and it appears to be a little less painful when it does occur. To combat this my Dr had given me a prescription for Tylenol with Codeine and it hasn't worked at all--so much so that I won't even take it when an episode occurs. I don't want to go down a path with more serious drugs if I don't need to but I've completely lost my tolerance to this pain and would like to know what might have a better chance of relieving the pain breakthroughs. I don't want to increase the Requip dosage unless the occurrences become more frequent seeing as this looks like it is now a permanent part of my life.

Another issue revealed during the sleep study was that I am entering REM at 58 minutes and that I need to decrease my sleep efficiency. Now, if I am depressed, as I understand is a possible reason for the early onset REM, (I don't believe I am) it would have to be going on for most of my life because I've always had non-refreshing sleep. Up until a few years ago I could easily sleep until 2-3 in the afternoon on the weekends--still didn't feel really refreshed though.

I've always had trouble going to sleep and now that I'm actually focusing on the sleep process I'm noticing things that really aren't normal that I've been experiencing for a long time: frequent nightmares, night sweats, periodic nightly awakenings, ALWAYS tired during the day and never feeling like I get a deep sleep. An example of this is our alarm clock. When it goes off it starts with a tiny click and then a beep that gets progressively louder. I wake up at that stupid click every morning. My fiancé, on the other hand, can remain asleep long into the loud beeps. What is possibly going on and what can I do?

I am not a regular alcohol drinker, I quit caffeine 5 years ago, I try to maintain good sleep hygiene and I try not to go to bed until I am ready to fall asleep. None of my blood tests have ever revealed anything out of the ordinary. Other than Requip, birth control and the occasional need for an inhaler I am not on any other medicines.

If the leg pain is only occurring 2-3 times per month then you may not want to increase the Requip. You may need a stronger pain medication such as Vicodin or even Percocet. When used a few times per month, this should be no problem at all.

I am not sure about your sleep problems. That may need further investigation.

Sent: Thursday, November 10, 2005 6:54 PM
Subject: Issues with Requip

I was diagnosed with RLS in 1998 after several years of unexplained insomnia. My doctor, who is board certified in sleep disorders, put me on 4 mg of Klonopin. Over the years he reduced that dosage first to 3 mg and then to 2 mg. I have developed tolerance on the 2 mg and need to taper off of it entirely. I had planned to use a combination of Xanax and Ambien to taper off of the Klonopin and also so I could swap drugs to prevent tolerance with the Xanax and Ambien. What do you think of this combination?

Also, my doctor is strongly suggesting Requip. I read the printed material that came in the sample box of Requip. There was a warning that Requip has caused retinal degeneration in albino rats in the 2 year carcinogenicity study. Doses given were equivalent to 0.6 to 20 times the maximum recommended human dose. The warning goes on to say that the potential significance of this effect in humans has not been established, but cannot be disregarded because disruption of a mechanism that is universally present in vertebrates (e.g. disk shedding) may be involved. Requip binds to melanin-containing tissues such as the eyes and skin. After a single dose, long-term retention of drug was demonstrated with a half-life in the eye of 20 days. In is not know if REQUIP accumulates in these tissues over time.

Given the above information, do you consider Requip to be a safe medication for use in humans?

I enjoy this web site tremendously.

Martin G.

Requip is a very safe drug, especially compared to Klonopin. There are no reported cases of problems with retinal problem with Requip even with the much higher doses used to treat Parkinson's disease.

Klonopin should be weaned off slowly under your doctor's supervision. Generally, we do not advise to use another benzodiazepine (Xanax) to help taper the Klonopin (you want to get off all benzodiazepines as they work on the same receptors). Some people find that Ambien (which binds much more selectively to the benzodiazepine receptors) may be helpful to promote sleep while tapering off of Klonopin.

Sent: Monday, November 14, 2005 7:47 AM
Subject: Re: Issues with Requip

Thank you for the information on Requip. I read were you often recommend using Xanax and Ambien for RLS instead of Klonopin. I assumed that if it was a good treatment for RLS, then it should be equally good for tapering. I was using 1 mg of Xanax for days 1 - 8 and then Ambien at 10 mg on days 9 - 10. Xanax has a short half life and should almost clear my body on a daily basis and certainly would on a two day holiday.

I have been Klonopin free for almost a week and consider that to be a considerable victory since I had been on a 4 mg dosage. My GP gave me a script for Dalmane to help in tapering. Once I checked the half life, I didn't fill the script. I had planned to reduce the Xanax to .5 mg after the end of this week and continue the same schedule for another ten days and then drop the Xanax to 25 mg. That would mean that I would have gone from 4 mg to no Klonopin in about 30 days.

Do you still see my plan as unsatisfactory?

Thank you very much and, again, you have the best RLS web site on the Internet.

Martin G.

Dalmane is indeed a bad choice as it has a half-life (47-100 hours) even longer than the 30-40 hours of Klonopin. Your plan is not too unreasonable as long as you get off of benzodiazepines completely (which includes Xanax).