Patient letters on RLS symptoms and remedies- Page 59

Kicking RLS/PLMD Patient

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

Sent: Friday, May 13, 2005 10:25 PM

Subject: Anemia and RLS?

I do have diagnosed iron deficiency and have been told to take iron orally. I also have RLS. Problem is, the oral iron tablets cause severe diarrhea for 6 hours after I take them. What can I do?

Sincerely,
Sierra

Medical Reply

There are many different brands of oral iron some of which cause less bowel problems. Interestingly enough, most patients get constipation as their bowel problem rather than diarrhea. You may want to try other brands such as Fesol or Ferrograd which seem to be better tolerated.

If no iron preparations are helpful then you may need intramuscular iron or even intravenous iron. The Johns Hopkins group has found dramatic improvement from intravenous iron therapy.

Sent: Monday, May 16, 2005 11:02 PM

Subject: Mirapex not helping RLS completely and eye side effects?

Its one am in the morning an I'm trying to read about people with RLS. I am 64 years old an have had RLS most of my life. Have tried everything. Nothing works for long. I have been on Mirapex now an started having trouble with my eye. Read some side affects on Mirapex about the retina an wondering if this is my problem. The doctor had doubled my dosage. Can hardly sit an type on computer, as my legs are going nuts. Sort of afraid to take Mirapex.

Can someone help?
CSC

Medical Reply

Eye problems can happen but are very uncommon with Mirapex. It is more likely that your eye problems are unrelated to Mirapex. You should check with an eye doctor to be sure.

You did not say what dose you are currently taking. Mirapex usually takes care of RLS symptoms at the correct dose. It should be taken at least 1-2 hours before symptoms occur to work. If you are take it too late and symptoms are already present it will not work nearly as well.

This drug is tolerated very well by most RLS sufferers. If you do have problems with it then ask your physician about a change to Requip.

A Reply from CSC

Sent: Tuesday, May 17, 2005 2:55 AM

Subject: Mirapex not helping RLS completely and eye side effects?

Thank you for your reply. I am taking two 0.25 now. It was one before. My doctor increased it a couple of weeks ago. I also went to eye doctor last week an he said the flashing lights in my corner of my right eye was a jell sack that broke loose behind my eye ball. I gave a list of my medicines I take an he never mentioned any side effects from them.

Its 5 am an legs are still going crazy. I will try taking my Mirapex early tonight an see what happens.

Thanks,
CSC

Medical Reply

If you are still having trouble despite a total of .5 mg of Mirapex then you have two choices. You can increase your dose higher (to .75 or even 1 mg) or add another drug such as a painkiller (Vicodin or Ultram) or an anticonvulsant drug like Neurontin.

Sent: Wednesday, May 18, 2005 12:00 AM

Subject: RLS after pregnancy and hemorrhage?

I remember having to move my legs at night as a child and sometimes hitting them with my fist. For years now I have had no problem. I hope it never comes back. I did however have one similar incident after giving birth. I could not control the movements and banged my legs together and against the wheelchair.

I had suffered a post partum Hemorrhage and had also had an epidural. Could one or both of these have been the cause?

Elisabeth

Medical Reply

Iron deficiency anemia is a common cause of RLS. It is very likely that the post partum hemorrhage caused anemia which in turn caused your RLS. Pregnancy, especially the third trimester is also a common time of worsening RLS but this usually settles down about a week after delivery. You were probably caught at the wrong time with your hemorrhage.

Sent: Tuesday, May 17, 2005 12:23 PM

Subject: RLS relieved by urination or bowel movement?

I have had RLS for as long as I can recall (for at least 50 years). I have noticed that after a bowel movement or urination at night or in a movie theater, plane etc the RLS feelings subside or go away completely. Why do you suppose this is?

I was pleased when I heard that RLS was real to hear that someone else with RLS experiences RLS relief after bowel or urination (see letter: Sunday, April 11, 1999 9:09 AM Subject: leg pains / RLS and Bowel Movements)..

My wife sits on the bed , with me on lying on my front on the bed, and pounds her heels into my buttocks and down my legs and this makes the RLS subside. Why does pounding work?

MG

Medical Reply

There are some RLS patients who have noted that they get relief and urinating or having a bowel movement. There is no explanation for this phenomenon at this time but it is likely that this may become clearer with future research.

Using a counter-stimulus such as rubbing the legs, running hot or cold water on the legs or stretching the legs are helpful activities for lessening RLS symptoms. The exact mechanism of this improvement of RLS is not really known but it may be similar to the relief brought by shaking your hand after hitting your finger with a hammer.

Sent: Tuesday, May 17, 2005 10:37 PM

Subject: RLS sufferer better with Depakote

I have had RLS for nearly 50 years and only have gotten treatment for about the last 15. Started out with Klonopin which led me down a road of addiction to prescription drugs and just recently have gotten free from that. It was awful. I have been on Requip for about the last 5 years.

Recently I stopped taking Depakote, because I had forgotten why I had been put on it in the first place. However, I realize now since I stopped it, the RLS has gotten absolutely the worst ever. I'm up all night literally doing steps, walking, jumping, etc and not getting any sleep. I have rebound and augmentation with the Requip alone.

I have been taking Lexapro for the last year and I find it keeps my mood very even keel, so I like it. I read on your site that Depakote is a remedy for RLS, so maybe I shouldn't have stopped it. What do you think? Should I try it again along with Requip or try some other drug(s) altogether.

Prudence G.
CA

Medical Reply

You are correct in your statement that Depakote may help RLS. The anticonvulsant drugs all seem to help RLS in many patients. The problem is that higher doses are needed with most of these drugs and sedation and other side effects become more frequent at those doses.

You should find out why you where put on the drug in the first place. If it was because of siezures then you certainly do not want to stop the drug. If you tolerate the Depakote well then there should be no reason not to go back on it. This may be the easiest solution to your current RLS problems.

Lexapro may also worsen RLS. If this drug cannot be easily replaced then you should stay on it. You might want to discuss changing it to Wellbutrin or trazodone if your RLS is not fully controlled.

A Reply from Prudence

Sent: Tuesday, May 17, 2005 11:30 PM

Subject: RE: RLS sufferer

Thanks so much for responding so quickly. You're great. The reason I think I was put on Depakote many years ago was to help with anxiety, which I don't have any more. A shrink advised me to stop it when he found out I didn't know why I was using it. I think I'll give it a try again since I really think I can link the huge increase in symptoms to when I stopped that drug.

As you know, we sufferers will try anything. I took a Xanax tonight and I'm thinking of alternating between the Requip and Klonopin and Xanax if that works tonight. Also, I avoid sugar like the plague as just one taste of something sweet instantly triggers the symptoms.

Again thanks so much for answering so quickly,
Prudence

Medical Reply

You can also consider the use of Neurontin (another anticonvulsant that is often used for RLS) instead of Depakote if you want to change in the future.

Be careful with Klonopin as it is a very long acting benzodiazepine. Xanax is a better choice but for sleep, Ambien is even better and not addictive.

A Reply from Prudence

Sent: Tuesday, May 24, 2005 8:11 PM

Subject: RE: RLS sufferer

Just saw a neurologist, who told me he couldn't cure me. As if.... after 50 years I expected of having this thing, I expected to be cured. He suggested taking iron and if I wanted to try something other than the Depakote/Requip mixture, Darvocet. That sounded that little too addicting drugs route to me.

Since I restarted the Depakote, and cut way back on sugar in the last week, the symptoms are better. So I'm trying adding in iron, taking 500 mg of Depakote and 1 mg of Requip in the evening. One night I didn't even have symptoms. I plan to visit my PCP next week and discuss the sciatic nerve pain I have and its relationship to all this. The neurologist said lower back problems can create enhanced symptoms.

Thanks for your feedback once again,
Prudence

Medical Reply

Iron therapy should only be added for RLS if the serum ferritin level is below 35-45. If not, the iron therapy will not help and may cause other problems.

Darvocet is a very mild narcotic that can help RLS symptoms. Unless taken frequently there is very little chance of addiction to this drug.

Lower back problems should not worsen RLS symptoms. Trauma to the back may however result in worsened RLS.

Sent: Tuesday, May 17, 2005 11:23 PM

Subject: RLS and foot surgery

I have had severe RLS for most of my life and inactivity makes it much worse. When I had a total knee replacement done almost 2 years ago, my RLS symptoms increased tremendously. I am currently taking Mirapex, with Darvon for break-through pain and getting some relief from these medications. Considering the lack of sympathy and insufficient pain medications (including withholding my "unnecessary" Mirapex) I experienced with the knee surgery, I am really apprehensive about having some serious foot surgery performed but don't know of any alternative.

I was diagnosed today with a ruptured tendon in my left foot - caused in part by foot deformity as the result of a childhood accident. The ruptured tendon and associated inflammation has caused my leg and foot to swell. I also am having a lot of knee and hip pain because of the way I am now walking; tingling and some loss of feeling in my toes and sole of the foot; and, most recently, sciatica pains.

My podiatrist said that the only certain way to handle my problem is to have a triple arthrodesis done. There are a few options (brace, etc.) I could try but he doesn't think they would help. I am gong to get a second opinion before I do anything, but I am concerned about the fact that the leg would be non-weight bearing for an extended period (up to 6 months or longer). I would be in a cast or brace for all of this time. I am already having considerable RLS problems in that leg. What effect, if any, would the immobility have on my RLS?

I couldn't keep my leg from moving long enough today for a MRI to be done - half -way through, the technician said there were too many twitches and jerks and the MRI will need to be repeated. The harder I tried to control the movement, the worse the RLS pains were throughout the entire leg - burning sensations were the worst - and that was for just a few minutes of trying to hold it still!

Do you have any suggestions, ideas, or comments on this situation that I could pass on to my doctor?

Thank you for any help or suggestions you can offer.

Catherine L.

Denver, CO

Medical Reply

Surgery or any other trauma to the body often worsens RLS. We are not sure why this occurs but this is a frequent concern. In addition, being sedentary will certainly increase your RLS symptoms. This should not stop you from having surgery but you need to be prepared for it and work with your doctors to take care of your RLS symptoms.

The immediate post-operative period is usually not a problem as they give you potent narcotics which should quell any RLS symptoms. Once you can take oral medications Mirapex should be restarted and narcotics (one that are stronger than Darvon) should be added as needed. This should easily get you through your hospital stay. You can download the following pamphlet: RLS & Surgery from the RLS Foundation which should give your doctors more "official" information.

Once home and not able to move very much you will likely need higher doses of Mirapex and Darvon or stronger narcotics (or possibly Ultram). Adding small doses of Neurontin may also be helpful if you do not want to increase the narcotics to higher doses.

Sent: Wednesday, May 18, 2005 10:13 AM

Subject: First steps to rule out causes

I am a 24 year old male. About 6 months ago I began experiencing all the symptoms of RLS, with one main difference... my symptoms are worse during the day, and very rarely affect my sleep at night.

Lately the daytime symptoms have gotten worse, and it is not only in my left leg but on and off in my left arm as well now. I do not have health insurance and can not afford blood and other types of tests. I am relatively healthy, do not drink, smoke, and avoid most types of medications (aside from allergy ones which I have now stopped after reading it can heighten symptoms). I have just picked up an over the counter Iron therapy supplement to try to take steps to weed possibilities out on my own. I do not have much meat in my diet, and as far as I know not many sources of iron. My mother has been diagnosed with iron deficiency, and I am unsure if things like that could run in the family.

Anyways, do you recommend against this course of action or have any suggestions that I should try to in order to weed different possibilities out myself?

Thank you for keeping up this great service and helping so many,
Dean

Medical Reply

RLS symptoms almost always start first in the evening (they peak between 10 pm and 2 am). However, once you fall asleep and stay asleep there may be no more nighttime symptoms (just as back pain disappears once you fall asleep and stay asleep). With time these RLS may start earlier in the day but they almost always continue into the evening and night.

If you have no evening RLS symptoms but rather only morning symptoms then you fall into a very small and unique group of RLS sufferers. They do exist but they are very rare.

Do you have family members with RLS as patients with early age onset very often have a family history of the disease?

You should not take iron without having a serum ferritin level (not very expensive) done. If it is normal (above 45 for RLS purposes) then taking iron may only be harmful. You will need to see a doctor to get medication to treat your RLS symptoms otherwise you will continue to suffer from this disease. There is not much more that you can do on your own.

A Reply from Dean

Sent: Wednesday, May 18, 2005 7:49 PM

Subject: Re: first steps to rule out causes

I do not have anyone in my family with RLS. And I do have symptoms at night.. they just aren't as prevalent as they are during the day. The nighttime 'creepies' are bearable enough.. the daytime ones can become maddening.

I have been sick this week with a sinus infection and was taking Allegra to stay decongested. But this week has by far been the worst yet. I'm hoping stopping the Allegra will make an impact.

I guess I'll just have to try and go for that serum ferritin test you recommended. Any idea how much a patient is usually charged for the test/processing?

And thanks again for everything. You have my gratitude,

Dean

Medical Reply

Allegra, Claritin, Clarinex and sometimes Zyrtec are often tolerated by RLS sufferers. You may be the exception with these drugs and probably should stay of off them if stopping Allegra helps your RLS.

Not sure how much the test cost but just check with your local lab.

Sent: Wednesday, May 18, 2005 2:26 PM

Subject: A miracle for me!

I started taking Mirapex (.125) about 2 weeks ago and I am now a new person. No creepy crawlers anymore when I sit down at night to watch television. I wish I had this drug 50 years ago. My mother did have restless legs also. I pray that my restless legs are gone "forever".

Medical Reply

They may not be gone forever but they should stay away on your present dose for a very long time (months to years). If your symptoms start occurring again ask your doctor about increasing your dose as you are currently taking a very minimal amount of Mirapex.

Sent: Wednesday, May 18, 2005 8:14 PM

Subject: RLS treatment with acupuncture?

Do you know of any studies that show that acupuncture can help with Restless Leg? I had acupuncture for low back pain and it helped tremendously.

Thank you,

Carol

Medical Reply

Acupuncture has not been studied for treating RLS. There are sporadic reports such as yours which demonstrate that it may be helpful.

Sent: Thursday, May 19, 2005 9:28 PM

Subject: Error on my part?

I followed your advice, worked with my doctor, and successfully used methadone and Neurontin to finally get through my Mirapex withdrawal. It's now Day 8 and I had no RLS last night and slept the entire night. The side effects from the Mirapex are gone, too. Here's where I made my error.

On Day 2 of using the methadone/Neurontin combo, I didn't take the Klonopin. I'd been taking .5 to 1 mg for a few months along with the Mirapex. When I decided not to take it, it never occurred to me that benzodiazepines need to be tapered and the cold turkey is a bad idea. I was so focused on getting off of the Mirapex, I simply didn't think about that. I thought about it as the drug that helped the Mirapex and since I was off the Mirapex, it didn't make sense to take it anymore.

On Day 3, I started having lower back pain. On Day 6, I started having nausea. Day 7 and 8 have included vomiting, chills, a headache, and shakiness. I didn't figure it out until tonight. I was reading a post about Klonopin and I realized what I had unintentionally done. I am assuming that I should take a dose immediately, get calmed down over the next week or two, and then start a tapering process to get off of it, but would like some confirmation that this is a good choice.

Also, I read about a controversial method for tapering by using Valium. Have you heard of this? If so, what do you think of it?

Ann B

Medical Reply

Klonopin can be a very tough drug to wean off of if done incorrectly. Due to its very long half-life of about 40 hours (half-lives will all be listed in my book) withdrawal starts much later than with other drugs (often 3-7 days after stopping the drug).

I have not heard of the Klonopin tapering plan using Valium but as they are both benzodiazepines I cannot see the benefit of that plan. Check with your doctor but Klonopin should be tapered slowly (by .25 mg every 1-2 weeks). If insomnia results one of the non-benzodiazepines (Sonata, Ambien or Lunesta) can be used.

Your error is one of the reasons that I always stress that patients should always check with their own doctor before making medication changes.

A Reply from Ann

Sent: Thursday, May 19, 2005 10:40 PM

Subject: Re: Error on my part

I didn't deliberately stop the drug without telling him, I just didn't think at all! I'm embarrassed and ashamed that I could have been so foolish. I have a call into my doctor, but don't expect him to call me until tomorrow. I took a dose of the Klonopin tonight and am markedly better a few hours later. I'm sure he'll work our a withdrawal schedule with me similar to what you have proposed.

All in all, I am terribly glad to be off of the Mirapex. I haven't had even a peep out of my RLS. I'll have to see over time, but by eliminating the cause of my RLS, I may truly get back to earlier levels - just a few times a month. I'll still have to deal with the nightly and severe PLMD, but that seems easy compared to the RLS hell induced by the Mirapex.

BTW, here's the info on the Valium withdrawal. It's an English Neurologist and professor that came up with the plan.

Switching to Valium is not about further addiction; it is about employing a safe method of withdrawal and recovering from addiction. Some people are surprised when I tell them that if they have been on another benzodiazepine for any length of time then they are addicted to benzodiazepines and switching to Valium won't change that.

The sound clinical reasons why Valium is the preferred method have been posted regularly here so I make no excuse for reposting them:

REASONS FOR A DIAZEPAM (VALIUM) TAPER by Professor C Heather Ashton DM, FRCP, April 2001

1) Diazepam [Valium] is one of the most slowly eliminated benzodiazepines. It has a half-life of up to 200 hours, which means that the blood level for each dose falls by only one half in about 8.3 days. The only other benzodiazepines with similar half lives are chlordiazepoxide [Librium], flunitrazepam [Rohypnol] and flurazepam [Dalmane] all of which are converted to a diazepam metabolite in the body. The slow elimination of diazepam allows a smooth, gradual fall in blood level, allowing your body to adjust slowly to a decreasing concentration of the benzodiazepine. With more rapidly eliminated benzodiazepine e.g. lorazepam, (Ativan) (which has a half-life of 10-20 hours) the blood concentration drops rapidly and withdrawal symptoms can occur between doses, because your body has little time to adjust to low concentrations.

2) Diazepam comes in the smallest dosage levels of all benzodiazepines � 2mg tablets which can be halved to give 1mg doses. This means you can reduce in stages of 1mg every 1-4 weeks or more. It is difficult to obtain such low doses of other benzodiazepines. For example the lowest dose of lorazepam in the UK is 1mg, equivalent to 10mg of diazepam. (In the US 0.5mg lorazepam are available, but these are equivalent to 5mg diazepam).

3) Many other benzodiazepines are more potent than diazepam. For example lorazepam (Ativan) is 10 times stronger and it is difficult to reduce from this gradually. Temazepam [Restoril], though less potent than diazepam, has a shorter half-life and the smallest tablet is 10 mg (equivalent to 5mg diazepam).

4) Because of the slow elimination and small available dosage strengths of diazepam, it is often advisable to switch to diazepam when withdrawing from other stronger or more rapidly eliminated benzodiazepines. This switch allows you to tail off your benzodiazepine dosage smoothly and gradually and minimizes withdrawal symptoms.

5) When making the switch it is important to do it gradually, replacing one dose at a time and at approximately weekly intervals and making allowance for the difference in potency. For example, if you are taking lorazepam 1mg three times daily, first change the night dose to 10mg diazepam. (This can be done in two stages if necessary e.g. lorazepam 0.5mg (half a 1mg tablet) plus diazepam 5mg; then drop the lorazepam and go on to diazepam 10mg). A week or two later change one of the day-time doses, and two weeks later change the other day-time dose.

Ann

Medical Reply

The Valium plan is interesting but I do have a few observations concerning this plan The half-life of Valium can vary somewhat and different reference sources have different values for it. Some estimates range from 20-100 and even up to 200 hours if you include the active metabolites but the average is about 40 hours. That is quite similar to Klonopin so the benefit of changing to Valium in your case would be limited. There might be some possible benefit for short acting benzodiazepines such as Halcion (triazolam).

Benzodiazepines usually do not decrease the frequency of PLM's very much but they do decrease the arousals from them.

Sent: Friday, May 20, 2005 10:05 PM

Subject: A second sleep study for PLMD?

I have had one sleep study, was diagnosed with PLMD, and as a result I was put on Mirapex .5 mg at bedtime. This worked (some) for 2-3 hours nightly. The dose was then increased to two .5 mg tablets at bedtime which improved my sleep (some). However, I am back to sleeping fitfully for 2-3 hours nightly and am now scheduled for another sleep study plus a daytime sleep study.

If I can't sleep at night does the doctor really think I will sleep during the day? What is the purpose of these two additional studies?

Thanks!
Karen

Medical Reply

Your problem is difficult to answer fully without knowing exactly what the first study showed. A real diagnosis of PLMD depends on several factors. First it depends on how many of the PLM's cause arousals (awakenings or changes from deep sleep to light sleep). The PLM's that do not cause arousals are of no real medical interest (unless they injure the bed partner) as they have no impact on sleep. Patients can have hundreds of PLM's per night without any clinical significance as long as they do not cause arousals.

Assuming that your PLM's do wake you up and prevent you from getting enough sleep then Mirapex is a good choice. They usually decrease PLM's nicely. Your dose of 1 mg is reasonably high enough that if it is not effective then increasing it would likely be of little benefit. If you are still having arousals from your PLM's not controlled by Mirapex at 1 mg, then you should discuss adding a sleeping pill (like the newer non-benzodiazepines which are not addicting). The sleeping pills generally do not decrease PLM's very much but they do decrease the arousals from them. That may be a better goal as you can then sleep through the night and feel well in the morning.

I am not sure why your doctor wants to do a repeat sleep study. He may want to rule out another disorder such as sleep apnea but unless enough time has elapsed since your previous study or your status has changed considerably (like a large weight gain) it is unlikely to show anything very different. The daytime study consists of 4-5 daytime naps (called MSLT) which is a test that looks for narcolepsy related disorders (fairly rare).

If you do better with the addition of a sleeping pill then there may be no benefit from another sleep study.

Sent: Saturday, May 21, 2005 4:56 AM

Subject: RLS and Compulsive Behavior

I have been diagnosed with RLS for over 10 years most of that Time I have been on Mirapex with dose gradually increased to two 1.5 tablets at night to get to sleep. If I am without Mirapex I get very little sleep. I have been noticing in the past 4-5 years some bizarre compulsive behavior, eating, shopping and now smoking cigarettes. I have always been an organized person but find I have a hard time concentrating and focusing.

I have heard that Mirapex has been suspected of causing compulsive behavior in certain individuals. I am wondering could it be causing my behaviors? If so, would getting off of Mirapex and to some other drug work better? Mirapex has been a miracle drug for me giving me a quality of life that I didn't think possible. Now however my compulsive behaviors are ruining my life. Any help will be greatly appreciated.

Thanks,
L J

Medical Reply

Mirapex is not known to cause compulsive behavior. I am not sure where exactly you heard this information but most of these items are anecdotes that may not apply. It is certainly possible that any drug including Mirapex could cause your behavior but the only way to prove it would be to stop the drug (which may have disastrous results) and see if the behavior changes.

Your dose of Mirapex is very high. Most RLS patients rarely need over 1-2 mg for any single dose. You may want to consider decreasing the dose and adding a narcotic or Ultram which may take care of your RLS problems and perhaps reduce or eliminate any behavioral problems potential induced by the high doses of Mirapex.

A Reply from LJ

Sent: Saturday, May 21, 2005 7:28 PM

Subject: RE: RLS and Compulsive Behavior

The story regarding Mirapex was on the news back in Feb. 05 due to several patients in the US and Canada threatening lawsuits against the Mirapex manufacturer as they claim it caused them to become addicted to Gambling. I thank you for your thoughts.

I feel that a consult with a neurologist is in order to have my Mirapex dosage evaluated and what might be the best course of action for me. This has not really been done since I was put on Mirapex some seven years ago.

Thanks again for your time,

L J

Medical Reply

There have been some class action law suites alleging that Mirapex caused gambling addiction and significant loss of money. There have been no reports yet in any accepted medical journals about this problem. That of course does not mean that the problem does not exist but until it has been studied scientifically we cannot be sure that it does.

The National Parkinson's Association has an interesting comment on this obsessive-compulsive behavior problem. Whether or not this problem is real is another story. In the meantime you should see if you can decrease or even eliminate Mirapex and see if your problem improves. With the narcotics and/or Neurontin you should be able to do this fairly easily.

Sent: Saturday, May 21, 2005 4:25 PM

Subject: RLS caused by Gluten containing foods

I wish to share my own discovery relating to the cure of my RLS symptoms... Just this last week I have made a life changing discovery, and my RLS has disappeared overnight. RLS has made my life a misery for 15 years. In desperation I have been monitoring everything I do and eat in an attempt to find a solution.

Through the years of investigations, trying and eliminating different factors, I have discovered Gluten may have been the problem all along. I never suspected that Gluten was a problem as I didn�t have what I perceived to be the symptoms. The very day I removed Gluten containing products from my diet, that evening I had a truly restful sleep (the first in many years) with no symptoms of RLS. I was able to continue this, and on testing this theory the day I reintroduced Gluten containing foods (in this case bread) the RLS symptoms occurred that evening.

Could this work for other sufferers? I would be interested to know.

Nicola
New Zealand

Medical Reply

There are about 5-6 letters on our website discussing the potential benefits of eliminating gluten and improving RLS (use our search function on our homepage to find these other posts). There is nothing in the medical literature that has studied this phenomenon but that does not mean that it does not exist.

We will post this on our site to see if others benefit from this information and write in to tell us that it helps.

Sent: Sunday, May 22, 2005 7:44 PM

Subject: RLS and Hysterectomy and iron levels?

I have had severe RLS for years. My doctor�s think this is iron related as my serum ferritin is always very low. I may need to have a hysterectomy for other reasons but I am assuming it will help reverse the iron issues. I was wondering if any studies have been done on RLS post hysterectomy (will keep my ovaries) and if RLS symptoms improve.

Brenda

Medical Reply

No studies have been done on RLS after a hysterectomy but many studies have found that increasing iron levels in the body (which should happen after your surgery) helps RLS in many patients.

Sent: Monday, May 23, 2005 1:04 AM

Subject: I think I have RLS...?

I'm quite certain that I have RLS but I'm concerned that I may be misdiagnosed since some of my symptoms are not commonly mentioned in when the ailment is described.

About six months ago I began to feel a mild vibrating feeling in my lower back after I went to bed and often early in the morning. It was so subtle that I attributed it to external sources (i.e. a neighbors washing machine). It was a couple of months later that I realized that the high frequency vibration or "quivering" was actually the muscles in my back. I also notice an odd pattern of cyclical rising and subsiding over a period of every five seconds or so. It would increase, stop, then slowly increase again - like some kind of motor. I attributed it to "stress" even though I really had no specific stressful event occurring in my life.

Quite suddenly -- within a week's time -- I began to notice the vibration in my back spreading to my trunk and upper legs, eventually spreading all the way down my legs. At this point I was quite concerned that it may be a nervous disorder like Parkinson's disease. I feared that it would spread to my arms. Sure enough a day later it spread into my shoulders, into my upper arms and eventually all the muscle regions of my body (not my head or neck). At this high point in the symptoms my hands and feet actually grew numb and "tingly" to the point that I could not feel them at all when in a rested position. I don't know if there's any relation, but I remember that several months prior to the onset of any of these symptoms, I had difficulty falling to sleep and would spontaneously awaken quite early (being unable to return to sleep).

These bizarre symptoms seemed to occur most at night before bed and upon lying down to sleep, but would also be very pronounced early in the morning. Sometimes even during the early evening and day, when in a rested sitting position, I can feel these slight tremors in my lower legs. After lifting weights -- for exercise -- my upper arms are unusually "quivery."

I'm currently living in Japan. The Neurologist at the hospital here gave me an MRI, CAT scan, and EEG, as well as blood tests related to thyroid issues. Based on those tests he saw no indication of Parkinson's, MS, or other serious nervous disease (he saw no indication of brain damage or abnormality) . He concluded the likelihood that I have RLS - which he, interestingly, claims is not a malady among the Japanese population. He gave me some kind of tranquilizer / anti-tremor drug called Landosen - a little 0.5 mg white pill. The pill, taken before bed definitely dissipates the symptoms enough (and makes me sleepy) to get a decent night's sleep but, again, in the early morning the symptoms typically return until I am up and moving about.

Searching the internet for information on RLS leads me to believe the Dr who examined me is likely correct in his diagnosis.

My concern is that I don't see any descriptions of RLS that specifically describe this high frequency cyclical vibrating sensation, and I don't see many description that describe it's occurrence in the back and shoulders as well as the legs/ feet and arms/hands. The phenomena of "needing to move my legs" does not occur at all in my situation, although it had on a few rare occasions in the past -- usually when fatigued from walking or not having enough sleep. This may be completely unrelated, but on a couple of occasions I've suddenly "heard" a sharp buzzing / crackling "electrical" sound in my head. When I say, "in my head" I mean the way one hears "ringing in their ears." I only note this because the "electrical" quality of it reminds me of the similar impressions I get from the vibrating in my body.

Taking the prescribed pills allows me to now sleep easily and the symptoms aren't as troubling when they do occur since I now know -- or, at least hope -- them to not be symptoms of a "serious" illness.

Communicating the details I've described here to the Dr. here in Japan has been somewhat difficult (Although he does speak fairly good basic English).

In a nutshell, do the particular unique symptoms I've described indicate Restless Leg Syndrome as the local Dr. has suggested?

Medical Reply

I cannot be sure without getting more information but from your description it does not sound like you have RLS. The key symptoms of RLS is an urge to move the legs (or other limbs) which may or may not be associated with abnormal sensations. You only describe the abnormal sensations.

Although your symptoms occur while in bed and at rest which is similar to the abnormal symptoms which occur in RLS, they should be partially or completely relieved by movement (in fact the urge to move is part of the desire to relieve the sensations such as the urge to scratch an itchy insect bite).

RLS is an illness that does occur in the Japanese but only occurs in about 1-3% of the population compared with 10% of the Caucasian population.

Sent: Monday, May 30, 2005 3:14 PM

Subject: Adderall and RLS

I am a 49 year old male. I have been taking .50 mg of Requip at bedtime for PLMD, which has controlled the condition. I also periodically experience restless legs. Recently I was diagnosed with ADD. I was prescribed 20 mg Adderall XR for the condition.

I have noted an increase in the restless legs during the day, and my wife reports on some nights I have some leg movement during sleep. Can Adderall worsen RLS and PLMD?

Michigan

Medical Reply

Adderall, like most potent stimulants (amphetamines and Ritalin) generally worsen RLS and PLMD. Provigil, which is a stimulant also but does not have the side effects of the older more potent amphetamines does not seem to cause this problem. There have been no studies on this problem but this is my general impression from managing many RLS patients with these problems.

Sent: Tuesday, May 31, 2005 5:19 PM

Subject: Clonazepam Holidays

As long as I can remember, I have had what I call intermittent insomnia where I would sleep two to three nights during the week. Over a year ago, frustration drove me to a sleep study where I was diagnosed with RLS and since that time I have tried several types of drugs. Initially, I was placed on Clonazepam 1 mg which produced the first good nights sleep I have ever known and continued to worked well for several months until I built up a tolerance.

Since this time, I have tried Sinemet, Permax, Mirapex, Requip and Neurontin with no luck even after varying the doses. Vicodin worked briefly until the onset of the pain began starting earlier and earlier each night and has some pronounced withdrawal characteristics if I take it for more than two weeks. I know Ultram controls the pain all through the night because I was awake the entire time.

It has become apparent to me that not only do I have trouble getting to sleep but staying asleep and my Neurologist has indicated I am at the end of his expertise. My PCP has allowed me the latitude to try any drug I like, within reason I am sure. I have seen letters where you have encouraged drug holidays and would like to ask you a question related to that.

If Clonazepam works well for me and addiction/tolerance is a concern, what could I take during the drug holidays that would result in getting to sleep and staying asleep? How often should I be taking the drug holidays? Would switching between drugs like this be considered a long term solution?

I sure appreciate any advice you can offer.

Thanks,

Scott

Medical Reply

Once you have developed tolerance to clonazepam using it again is more likely to lead to trouble. Although stopping the medication does restore it to full power starting it again brings a much higher risk of tolerance and addiction occurring. It would probably be much better to try the non-addicting, non-benzodiazepine sleeping pills (Sonata, Ambien or Lunesta) which may provide the same good nights of sleep without the risk of tolerance and addiction.

You may need another drug to control the RLS symptoms which may reduce the dose of the sleeping pill that works for you. Ultram is a good choice as it has a very low addictive potential.

Medical A Reply From Scott

Sent: Wednesday, June 01, 2005 7:32 PM

Subject: Re: Clonazepam Holidays

I am sure you can imagine how frustrating it is to search for the drugs that work with minimal side effects and it is very reassuring to have a place to go to get answers. I cannot tell you how much I appreciate your help. I was under the impression that drugs like Ambien could only be used for short periods of time. I am concerned about the addictiveness of benzodiazepines and would really like to avoid another situation like I had with Vicodin.

Again, thank you so much for your help,

Scott

Medical Reply

Lunesta is officially indicated for long term use as they did the extra long term studies to get this approval. They have not done these studies on Ambien and Sonata but experience has shown that physical addiction does not occur with these medications.

Sent: Thursday, June 02, 2005 5:57 AM

Subject: Update on my Mirapex

Just an update on my use of Mirapex. I have been taking it for approximately five weeks. It's been about four days now, and I have been feeling a little dizzy in the morning. It goes away in the afternoon. And to boot, the other night I had a tinge of a restless leg. I did not call the doctor. I figured I would give it another week. Not too dizzy to be concerned and know that when I stand up, I do it slowly.

Perhaps, you were right that the dose has to be increased even though I think it is too soon to tell. And if dizziness is a drawback, I will not have the doctor increase the drug. Another thing I am confused about is the difference between Requip and Mirapex.

Thanks again for your concern,
Margaret

Medical Reply

Dizziness sometimes occurs with Mirapex but usually that is at the start of therapy and it gets better with time. You may need a dose increase but there is no hurry. You can wait and see what happens over the next several weeks or longer.

Mirapex and Requip work very similarly but some patients do better with one or the other.

Sent: Thursday, June 02, 2005 1:48 PM

Subject: Requip Not Working

Requip is not working well. I take 1mg 4 times a day at approximately 7pm,10pm,1am,4am. The benefit lasts about 2.5 to 3 hours. Augmentation during the day is as bad as with Sinemet. Frequently I get severe anxiety in early evening even after I have taken the first 1mg of Requip. My doctor gave me Darvocet-N50 to take as needed. Sometimes it seems to help. I also tried 50 mg of soy isoflavones at bedtime and it helped at first to relieve the anxiety.

Is it alright to increase the Requip by increasing the dose or take it during the day too? Is there anything new I could try to relieve the augmentation? The addition of opioids be a good choice?

Deeply grateful,
Bill H.

Medical Reply

It may be helpful to get completely off the Requip for several weeks then restart it or Mirapex. A drug holiday usually resets the augmentation problem. Taper off the Requip slowly and have your doctor prescribe a higher potency narcotic such as Vicodin (I prefer methadone but most physicians do not like to prescribe this medication). to help with the RLS symptoms while eliminating the Requip.

In a few weeks when you restart Requip or try Mirapex you should be able to stop the narcotic.

Sent: Monday, June 06, 2005 7:30 AM
Subject: Effexor worsening RLS?

Does Effexor 150 mg one day and 75 mg the next ever cause RLS to worsen? My doctor seems to think, even after a sleep study that diagnosed me with RLS, that this is not the case. Since starting this med a year ago, I did not sleep at night unless I have taken Ambien or Xanax. Never tired in the daytime either.

After complaining that my legs were bothering me at night as I could not hold them still, the doctor suggested the sleep study. I asked that she change the Effexor but because it has helped with depression so well, she will not do it. I was given Klonopin .25 in January and it helped very well until April. Now I am taking .75 of Requip. I feel so drugged in the morning, I do not like it although I am sleeping ok.

Prior to Effexor, I took Paxil for 5 years and noticed if I took 40 mgs my legs bothered me but not a smaller dose. Prior to Paxil, I was on Tofranil 75 mg at bedtime for 10 yrs. and slept well but was also tired most of the time.

Medical Reply

Effexor can certainly cause worsening of RLS at any dose. The higher the dose, the worse the reaction as you have already noticed with Paxil. It is very likely that Klonopin is causing much of your next day drugged feeling. It has a 40 hour half-life that can really hang around the following day. Taking another medication that may cause a little drowsiness with the Klonopin can markedly worsen the problem.

It may be worth a trial of Wellbutrin or trazodone (the only 2 RLS friendly antidepressants) but if these do not help your depression then you may be stuck treating your enhanced RLS symptoms.

Sent: Monday, June 06, 2005 10:13 PM
Subject: RLS

I have just finished reading all the letters, treatment plans, research everything. It is 1:02am and I am up yet another night. Your site and the info on it has stunned me. When I was a young child I used to get "growing pains" all the time. They hurt. I remember them well. Then as I got older they seemed to go away. I don't know if it was all the exercise or what but I didn't have them.

Two years ago, at 57 years old, it came back with a vengeance. I had two sleep studies and the doctor found I stop breathing 27 times per hour and have a "roaring" case (as he put it) of RLS. He gave me Mirapex and Ambien. The Ambien did help with putting me to sleep but the Mirapex made the leg movements, spasms etc worse. My legs would feel like lead in the morning. Several times I had to crawl to the bathroom at night.

Then, it seemed almost like overnight, I was diagnosed with degenerating hips, arthritis in my hips and spinal stenosis and arthritis. The pain became almost unbearable. The docs put me on Vicodin. After the arthritis "flare" started to settle down I pared the Vicodin back to only at bed so I could sleep. I had totally forgotten about the RLS. I had no symptoms.

I ran out of Vicodin two months ago after I moved from CA to VA. The docs in VA are terrified to give me Vicodin. So I have no meds for a month now. The pharmacist said to try Benadryl. I did. No use. I tried Tylenol PM...no use. I didn't even sleep. The RLS has been so bad I would hit my legs and end up crying on more than once occasion. Everything I took seemed to make it worse. Especially the Benadryl.

Now I read that SSRI's, Benadryl and caffeine make RLS worse! I had NO idea! Now I know why I haven't had RLS for a year- I have been taking Vicodin. Since I am not taking it now, been taking antihistamines and taking myself off Effexor, it has all gotten worse. I thought I was crazy and condemned to live with no/little sleep the rest of my life.

THANK YOU for having this site. I am not crazy! There is a solution,
Cheri S.

Medical Reply

When the dopamine agonists do not work other medications such as the narcotics or Ultram should be used. It may be difficult to convince your current doctor but you should be able to get a referral to a doctor who knows how to treat RLS properly and will use the appropriate medications.

You may also want to consider trying Neurontin in the evening if there is a concern about your narcotic dose.

Wellbutrin or trazodone may be reasonable RLS friendly antidepressants to use if you need one.

Sent: Tuesday, June 07, 2005 2:06 AM

Subject: RLS and Parkinson's disease

Has there been shown to be any link between RLS and Parkinson's disease. More specifically, can, or does RLS develop into Parkinson's disease?

Emiy K.
Virginia Beach, VA

Medical Reply

RLS does not develop into Parkinson's disease. However, patients with Parkinson's disease do have a higher incidence of RLS (20% compared with 10% in non-Parkinson's disease). They are separate disorders except for the possible connection with dopamine drugs helping both.

Sent: Friday, June 10, 2005 11:53 AM

Subject: RLS and MSG

Have you heard anything about a connection between RLS and monosodium glutamate? I've been able to find anecdotal reports, but nothing official.

It seems harder and harder to avoid MSG, but definitely feel an improvement in my RLS when I make the effort. The question is, is this real or a placebo effect?

Thanks,
Cathy A.

Medical Reply

MSG certainly can cause headaches and other problems. I have only heard anecdotal case reports of MSG affecting RLS also as there are no reports of this interaction in the medical literature. It would thus be impossible to comment on whether this is a real or imagined connection.

Sent: Tuesday, June 14, 2005 11:46 AM

Subject: RLS and rheumatoid arthritis

I am a 74 year old female with a very active life and for 2 years I am using Dostinex for my RLS with optimal relief. Recently I was diagnosed with rheumatoid arthritis and my rheumatologist prescribed to start with 2000-24000 mg daily a non-steroidal anti-inflammatory drug, Ibuprofen.

Do you think there could be a relationship between RLS and RA ?

M.H.V.

Voorschoten, NL

Medical Reply

Some studies have noted a small increase of RLS in rheumatoid arthritis but this has not really been proven scientifically.

Sent: Wednesday, June 15, 2005 6:59 AM

Subject: Mirapex and Insomnia

I had a sleep study conducted about a month ago and was diagnosed with PLMD. I was experiencing about 30 events per hour and it was awakening me an average of every 7 minutes. Mirapex was prescribed and I have been taking it for a week. I am taking .25mg about an hour before bedtime.

While I have had difficulty sleeping for years, my insomnia seems to have gotten significantly worse in the last week. It started with me waking about 3 am and usually not getting back to sleep. Now I am going to bed about 11:30pm and waking around 1am and not getting back to sleep. My wife is not sure if I am still twitching at night (she complained about it in the past but was surprised to hear it was as prevalent as discovered.) However, she is complaining about me waking her up as I get up multiple times at night.

Is it possible the Mirapex is causing or aggravating the insomnia? If I continue using it, is it possible I will adjust and won't experience the level of insomnia I have been having? I am exhausted and having serious difficulty concentrating in the morning.

Any suggestions?

Ted K.

Medical Reply

Mirapex can cause insomnia (or even sleepiness for some). It may be that the dose of Mirapex that you are taking is not high enough to resolve your PLMD but only cause some insomnia.

Here are two suggestions:

1) Increase the dose of Mirapex (while taking Ambien for insomnia until the problem improves) until the PLM's resolve.

2) Change from Mirapex to Requip which acts on the same receptors but may have different side effects.

Sent: Wednesday, June 15, 2005 6:25 AM

Subject: RLS and pregnancy

I am a 33 year old and now 40 weeks pregnant and I have suffered from RLS from when I was 14. I have tried all the methods to help RLS and have been tested for iron/magnesium etc. I am an athlete and have a good diet. I always considered my RLS to be mild and I could cope with it up to pregnancy. I got used to walking around the house for a couple of hours every night and feel well rested usually after 5 - 6 hours sleep.

As soon as I became pregnant I started to get a severe case where it lasts all night and is very painful. I have to keep moving which is exhausting when your pregnant. I went to my local doctor in tears as I would fall asleep at around 5am, then get up to go to work at 7am.

My doctor said there was nothing at all I could do for it during pregnancy. So, I tried to cope with the pain and lack of sleep. I eventually broke down and ended up in hospital due to exhaustion, major sleep deprivation, depression (of course), hallucination and very dangerous driving. I was made to quit work and started to take temazepam every second night which helps.

What medication do you suggest safe taking whilst breastfeeding? Does the severe symptoms I am experiencing usually go away after giving birth? I haven't come across any doctor that is well educated with this disorder.

Tina H.,
Australia

Medical Reply

Temazepam is actually in the worse class of drugs to be taken by a pregnant patient. In the USA this drug is almost never used in pregnant females nor are the other benzodiazepines.

Methadone in low dose is very effective for RLS and has been shown to be safe in pregnancy (Category B). Another Category B drug is cabergoline (trade names are Dostinex, Cabaser) which also is very safe in pregnancy and effective in RLS. Narcotics must be stopped late in the pregnancy as they have been associated with neonatal withdrawal syndrome and respiratory depression, so they will not work for you at 40 weeks.

The good news is that your RLS will be gone within a week or two after delivery.

Breastfeeding can also be a difficult situation as most drugs either pass into the breast milk and affect the child or decrease lactation (the dopamine drugs). Methadone (low dose) passes only minimally into breast milk so this may be the drug of choice for nursing mothers.

Sent: Wednesday, June 15, 2005 5:59 PM

Subject: ADHD medications and RLS.

I contacted you on May 30 regarding Adderall XR and RLS/PLMD. A decision was made to discontinue the use of the Adderall for several reasons, including the negative effect it had on the RLS/PLMD. I will be seeing my doctor next week and anticipate I will be trying another medication for the ADHD.

I am wondering what medications used for the treatment of ADHD might be preferable given the problem I have with RLS/PLMD? Based on your response and my experience with Adderall, it appears that stimulants may not be the best choice. I would appreciate any recommendations you may have. FYI, I also take 150 mg of Wellbutrin XL as well as 10 mg Prozac for depression and .50 mg Requip at bedtime for PLMD.

Also, I have been off the Adderall for 3 days but still experience some RLS symptoms during the late afternoon (which was rare before I took the Adderall) and still have leg movements during my sleep according to my wife. Could these be lingering effects from the Adderall?

Thank you very much for your help.

TJS,

Michigan

Medical Reply

There is really no medical literature to answer your questions but I will do my best based on my knowledge of RLS and patient's reactions to medication.

The Prozac may be causing your RLS to worsen (or not as it is more common to worsen but some even get better) and perhaps stopping it and increasing the Wellbutrin XL to 300 mg may be helpful. Provigil may work as a stimulant but should not worsen RLS.

It is difficult to say why your RLS symptoms are still lingering off the Adderall, but it may take a week or longer to normalize.

Sent: Wednesday, June 15, 2005 10:37 PM

Subject: Mirapex Side Affects

I have been on Mirapex for a couple of years. Overall it does really well. However, lately, I have pins and needles sensations all over and nausea. Could this cause these symptoms?

Deborah M.,
Plano, Texas

Medical Reply

It is possible that Mirapex is causing nausea but this usually happens with increasing the dose rather than when on a stable dose. Pins and needles would be more unusual to occur due to Mirapex.

Sent: Thursday, June 16, 2005 11:43 AM

Subject: Mirapex-Requip-Oxycodone

I want to thank you again for this website and your willingness to answer our questions. It has been extremely helpful and informative as I have finally been able to take control of RLS. Now to the questions.

What is the difference between Mirapex and Requip? I had been on Mirapex for more than a year and finally switched to Requip (at your recommendation) after side effects of severe heartburn. I took the Mirapex about two to three hours before bedtime and it worked about 99 percent of the time in eliminating RLS symptoms. I took .25 mg each evening and never saw the need to increase the dosage.

Now that I am on Requip, the heartburn side effect is not as severe (at least not yet) but in order to control RLS I am taking .5 mg about two to three hours before bedtime and I am not completely satisfied with the relief. There have been nights where the sensation never went away and other nights where I was awakened by RLS symptoms. Should I consider raising the dosage? And if so, why would such a small amount of Mirapex work and a larger dose of Requip not work?

My doctor has told me if the Requip does not work or if the side effects are too troubling that about the only other choice is narcotics. I must admit the best relief I ever had was with Oxycodone. It was prescribe for something else, but that is when I found out that it totally controlled my RLS. And there were no nagging side effects. At that time I was taking 5 mg each evening.

Obviously, I am concerned about possible addiction. I am assuming at some point my body will adjust to the dosage and I will have to increase it. If I have to eventually go that route, what is the maximum amount of Oxycodone I can take each day before I should become concerned?

Medical Reply

Requip and Mirapex are similar in that they act on the same dopamine receptors (the D2 and D3 receptors) in the brain. They are metabolized differently (Requip in the liver and Mirapex in the kidneys) and have different side effects which changes from person to person.

Generally Mirapex is twice as potent on a mg to mg basis (.125 of Mirapex = .25 of Requip) but that also may change in any given individual. In your case it appears that Requip at .5 mg should be equal to .25 of Mirapex but you may need a little more to get an equivalent dose.

If after increasing the dose of Requip to about 1 mg you still feel as if your RLS symptoms are not controlled then you may add (instead of replacing) a narcotic such as oxycodone at 5-10 mg ( I prefer methadone 5-10 mg). Taking a narcotic at that dose level once a day should not cause tolerance or addiction.

Sent: Thursday, June 16, 2005 10:04 PM

Subject: Mirapex and gambling addiction?

My mother, 87 yrs old, is on levodopa and has found that her RLS is worsening. I told her about Mirapex after reading your website. She asked her doctor about it and he said it causes compulsive gambling and there is now a class action law suit in Canada. Is this true or even possible?

What drug would be best for her. She is beside herself with RLS starting early in the day sometimes all day. She also have Meniere's Disease.

She is on the following medications; Trazodone, nabumetone, levodopa/carbidopa 25 mg, hydroxyzine, clonazepam, mirtazapine, Prilosec, and a high blood pressure medication. She is very alert, walks every day and plays bridge 3 times a week. Any suggestions would be so welcome.

Canada

Medical Reply

There are reports of compulsive gambling with Mirapex but these usually are very unusual and occur mainly with the higher doses that are used for Parkinson's disease. I have yet to hear or see that problem with the use of Mirapex for RLS. She should get off of levodopa as soon as possible while starting on Mirapex or Requip (similar to Mirapex and just FDA approved for RLS here in the USA).

Hydroxyzine should also be stopped as that drug almost always worsens RLS. Remeron (mirtazapine) also generally worsens RLS but if this drug is needed for depression or anxiety problems changing or stopping it may be a problem and not worth taking a chance of worsening the underlying disorder.

Sent: Friday, June 17, 2005 3:21 PM

Subject: Hops for RLS?

I have lupus, Sjorgen's syndrome, Fibromyalgia and restless leg syndrome. My neurologist gave me Tegretol. It has helped dramatically. I later on found out about hops. It is very inexpensive and helped me tremendously It can be bought in any health food store. Just type in hops on your computer for more information

Howard B.

Sent: Saturday, June 18, 2005 2:03 AM

Subject: Treatment during pregnancy

I hope that you will have the time and information to help me. I am 35 years old. I have been having trouble with insomnia and not feeling rested even when sleeping for the last 15 years. My mother was diagnosed with restless leg syndrome ("happy legs") during chemotherapy for lymphoma.

During my first pregnancy to result in a child (I have had multiple miscarriages, ectopic pregnancies, etc), my symptoms were simply unbearable. I would go literally weeks without sleep at all. Things did not improve at all following delivery. Finally, about 7 months ago, I was diagnosed by a pulmonologist who specializes in sleep disorders with PLMD. He started my on Neurontin 600mg at bedtime. It changed my life. I started sleeping 8 full restful hours a night. I've been awakening refreshed and relaxed. I just can't express how great this has been.

Within the last two weeks I noticed that I was waking in the middle of the night and feeling totally exhausted all the time. Surprise! I am pregnant again. Talking with the ob/gyn and my sleep doctor, I have had to discontinue the Neurontin. I am like a walking zombie. I haven't slept in days. I'm emotional, exhausted and frustrated. I am seriously considering terminating this pregnancy since I can't face the potential of two more years like this (nursing time included). I JUST got my life back and don't want to lay awake crying at night anymore!

Are there any medications that can be used with safety in pregnancy to provide some relief? I would really like to keep both my sanity and my child.

Looking forward to you reply,
Amy E.

Medical Reply

There is some hope for pregnant RLS patients. Category B drugs can be used reasonably safely (although not as safely as Category A drugs which are completely safe). These include Dostinex, Permax (but limited data only), Ambien and methadone in low dose.

Dostinex (a very long acting dopamine agonist) has been studied adequately for both RLS and pregnancy. It is used extensively in Europe (where it is more affordable) and works very well as a once a day pill for RLS. Here in the USA it is only indicated for prolactin secreting pituitary tumors at 2 pills per week so that the increased daily doses for RLS make this drug very expensive.

Methadone can be added to Dostinex when necessary or even used by itself. This drug is extremely effective for most RLS sufferers and has been well studied in pregnancy. Methadone should be stopped late in pregnancy to avoid problems with neonatal withdrawal syndrome and respiratory depression. Ambien can be used for those nights when sleep is still a problem (do not use antihistamines or OTC sleeping pills which all make RLS much worse).

For nursing, methadone may be a good choice as it passes minimally into breast milk.

Sent: Tuesday, June 21, 2005 3:59 AM

Subject: RLS and hormone therapy

I started experiencing the creeping feelings, which I have tried to describe to others. Your website has helped put labels to the sensation. I had attributed it to menopause/ HRT. I am a 55 yr old female and this has been going on about 5 years.

Can estrogen therapy exacerbate symptoms? I have never had legs twitch or jerk and I am not awakened that I know of, though at times I am tired in AM. Mainly notice just an electrical type feeling when first lying down , though it does hit during day at odd times.

Medical Reply

Estrogen has been noted to worsen (or sometimes even help) RLS.

Sent: Tuesday, June 21, 2005 2:38 PM

Subject: RLS & diabetes

My husband was diagnosed with type II diabetes last Nov. He had suffered with RLS mildly all his life, but it seems to be more advanced since he was diagnosed with diabetes. He also suffers with peripheral neuropathy.

Does the neuropathy aggravate the RLS syndrome more? He is insulin dependent with an injection every AM & PM. He also had a 5-way coronary bypass last November. Is Requip safe for him to consider taking with his health problems?

Thanks,
Pat A.

Medical Reply

Neuropathy is common in diabetes but there are only certain neuropathies in which RLS is more common. However, a minority of RLS patients do have an associated neuropathy that is often painful and can be hard to treat.

Requip does not interact with any other drugs so it should be safe for your husband.

Sent: Wednesday, June 22, 2005 1:10 PM

Subject: RLS or Parkinson's symptoms?

I am a 64 yr. old female who has had RLS for many years. I was treated with Sinemet (sp) until it became ineffective and then my Dr. switched me to Mirapex. 0.125 mg. twice a day. Recently I became aware of a slight tremor in my right leg if I was sitting down. I could voluntarily stop it by assigning myself another position or tightening my muscles. I especially notice this activity if I am seated and am nervous or anxious. Specifically, I would like to know the answer to the following questions:

1. Could this sporadic tremor be an atypical response to Mirapex? The tremor began after I started using this prescription and seemed to ebb when I cut my intake by half.

2. Does this on again - off again tremor mean I am experiencing the onset of Parkinson's Disease?

3. Is there a correlation between RLS and PD? By that I mean, does RLS usually precede PD?

4. Are there specific lab tests that determine a diagnosis of PD?

I have never heard of a tremor being associated with Mirapex nor is it documented in the medical literature. However, if it has been related to starting and changing the dose of Mirapex then you may have a new not yet described problem with this drug.

Medical Reply

It is very unlikely that you have Parkinson's disease. Although RLS may be more common in patients with Parkinson's disease (up to 20%), RLS does not lead to or precedes Parkinson's disease.

There are no specific tests to determine Parkinson's disease but any competent neurologist can make that determination after examining you.

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