Patient letters on RLS symptoms and remedies- Page 21

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Date: Tuesday, July 13, 1999 7:17 PM
Subject: Natural herbs for RLS?

My sister is going crazy!!! I decided to go on the internet to find out more about this disease. My sister is getting to the point where she's pulling the hair off of her head and I'm very worried. She has tried Klonopin and it helps but cannot see her doctor for another week since she's run out of her prescription. She has not slept in 5 nights and is on the verge of losing her job.

From some of the letters I have read on your site (which is wonderful by the way), it seems that there are some folks who benefit from natural medicines and some who prefer the more addictive kind. I would not want my sister to be addicted to Xanax or Percocet or Methadone.

Two of your letters mentioned some natural herbs called vata chintimani and arjun. Where can one buy these medicines or is there somewhere on the internet where I can purchase them? Please help me help her.

Medical Reply

Addictive medications are always the last choice for RLS sufferers. Unfortunately, for severe cases of RLS, it is often very difficult to avoid using these medications. Your sister sounds like she does have at least a moderate to severe case, but there are other alternatives.

I do not know where to buy natural herbs such as vata chintimani and arjun, which have helped some RLS sufferers, but I am sure with a visit to you local health food store or a search on the Internet, you will find many sources. You can have your sister try these products, but the chances of success are very small. They seem to help only a rare few individuals.

Xanax or Ambien are much better than Klonopin as they are much shorter acting, so there is less daytime sleepiness and it is easier to take a drug holiday from shorter acting drugs. As long as regular drug holidays are taken, the chance of addiction and tolerance is rare.

A better choice for your sister would be the non-addicting Parkinson's disease drugs Mirapex or Requip (not Sinemet). These often work extremely well, and may obviate the need for addicting medications.

Date: Wednesday, July 14, 1999 9:46 PM
Subject: RLS and Sex

I am a 38 year old male and have been a RLS sufferer for about 20 years. Like many of you, I thought I was going crazy,  punching my legs, doing 100 push-ups in the middle of the night (this still helps) threatening to saw my legs off, etc. I have never tried prescription drugs and hope to avoid them as long as possible.

I have a very loving and understanding wife of 17 years. She has seen me suffer with this and has often been kept awake with my jerking. I offer this remedy seriously: an hour of good sex right before bed usually assures me of a great night's sleep. Of course good sex means that you are giving love and passion as well as receiving it, so guys, don't just use it as an excuse to receive and not give. My wife is multi-orgasmic and if she has the energy, she definitely benefits from our lovemaking time.

Please understand that I am not trying to be funny or irreverent. I know what it's like to be staring at the ceiling for 3 hours, nearly in tears, just begging that the tremors in my legs would stop. I empathize with those who have been driven to near suicide. And for many, as with many of the medications, even sex will not work. On the bright side however, you can't overdose, and there are no adverse side effects!

D.R.,
Jackson, MS

Medical Reply

I am not sure if most RLS sufferers will have the opportunity to take advantage of your treatment, especially most of the older RLS sufferers but if this can help some, then it is worth posting.

Date: Saturday, July 17, 1999 1:59 PM
Subject: RLS and Mirapex and Sinemet.

I am new to this page, but was pleasantly surprised to find current information of this often misunderstood disorder. I am a 42 year old female who has been on medication for this since 1992. It took me several years to get an accurate diagnosis. Being in the medical field, I at least had the understanding to pursue an accurate diagnosis and treatment on my own. After receiving several misdiagnosis and continuing to experience increasingly strong symptoms, I decided to research it at my local library. This led me to visit a neurologist who had no prior knowledge or preconceptions of my disorder. Fortunately, I found a very understanding and updated doctor. In fact it he encouraged me to use the internet to receive more information and locate support groups.

I have been on Sinemet 25/100, 25/100CR, and 50/200CR. Over the years I, along with the guidance of my doctor, have learned to dose myself, depending on the amount of hours sleep I knew I could get at night. I found at first the side effects to be almost intolerable, but have since adjusted to them. Knowing exactly what dose to give myself at night or on an extended car ride is comforting to know. After experiencing rebound symptoms and reading about the relationship to this from the Sinemet, I approached my doctor. He then started me on the latest medication, Mirapex, allowing me to determine the dose I need.

I am off the Sinemet and am using Mirapex,.125mg tabs, with a range from 1 - 4 tabs. I have found 1 tablet to be not enough to control the symptoms. Two to three tablets have offered good relief. Since going off the Sinemet and starting on the Mirapex, my waking with worsening symptoms, and daytime or early evening start of symptoms have mostly disappeared. My doctor had also allowed me to take Tylenol #3 to supplement the Sinemet. I received a certain amount of pills every month, to avoid any addiction problems or tolerance and usually only required 1/2 tab at night (if needed at all). I haven't required it yet while on the Mirapex.

My main concern is how much to take when I know I can only receive a limited hours of sleep, generally only about 4 hours. Also, before I could not take a nap without the use of the Sinemet. Can Mirapex be broken in half to reduce the time when it wears off? I also had to take Sinemet when traveling several hours on a car ride and I don't know how to dose myself now. Any suggestions? One more concern I have is that the quality of sleep seems lighter, is this to be expected? My husband tells me I seem to be sleeping more peacefully.

My last concern is I feel I have mild short term memory loss and I wonder if it could be related to long term use of Sinemet? In my experience I found a very warm blanket wrapped around my legs, or massage of them have helped on a temporary basis. Strong distraction also can ward it off for awhile. I wonder if anyone has tried hypnosis or a pain clinic? You can certainly get tired of taking medication all the time. One thing that always makes it worse is over fatiguing myself, whether by lack of sleep or physical activity.

A side note to all this is I always had "Growing Pains" as a child and have been diagnosed with Rheumatoid Arthritis two years ago. My fellow suffers will understand right now I would rather deal with the RA than have RLS. I also noted a connection between RA and RLS, and in a strange way it helped to know that the RLS is not "just in my mind". My doctor encourages me to tell people about the RLS to find fellow sufferers, but I have not persuaded to do this yet because I find a lot of people cannot comprehend the feelings we have. I hoped this note may help someone and look forward to your medical reply.

Sincerely,
DS, Ill.

Medical Reply

Mirapex can be taken a few time per day if necessary. A smaller dose if often needed (1-2 of the 0.125 mg tablets) taken 30 minutes before daytime activities that require you to sit for a long period of time. You really have to experiment, starting with a low dose and working slowly up to the lowest dose that takes care of your problem. Mirapex can be broken in half, but this is only for fine tuning the dose.

You do not state why you are not sleeping more than 4 hours during the night. If it is not due to PLMD or RLS, then adjusting your Mirapex dose will not help. Sometimes, adding a sedative such as Xanax (used on an intermittent basis) will enable you to get longer sleep times at night. Mirapex should not affect the quality of your sleep, except for improving it, if you have had problems with PLMD.

Your short term memory loss is unlikely to be related to your previous Sinemet usage. Hypnosis has been tried, but with very limited success.

Date: Saturday, July 17, 1999 5:42 PM
Subject: Iron, ferritin levels and RLS (see previous letter Page 20, July 12,1999).

I am still happy and doing well with Repuip.

There are two other matters. First, I seem to have to take iron, 27 mg elemental iron pills,  to keep my ferritin level up to the minimum number of 45. A few months ago, I reduced my dose to one, 27 mg pill per day, taken with 500 mg of Vitamin. C, but now, I'm down to 40. On 2-3 pills a day, I've been as high as 70. Three years ago, when I had my first test, the ferritin was at 14.

So what to do? I hate the pills because they cause cramping and diarrhea. We do eat very little red meat, maybe once a month maximum. So, should I increase the meat intake instead of taking more supplement?

Second, almost at the same time I became aware of my RLS, I discovered that I had lost fat on the bottoms of my feet. I wear all manner of padding to escape very painful nerve tingling, but am not always successful, like right now. Is this possibly related to RLS? Ferritin?

As always, Thank you, thank you for your help,
Anne G.

Medical Reply

There are other foods beside meat that contain iron, just check with your medical plan's dietician, your doctor or the local bookstore/library for a list of these foods. Most people need about 1-3 tablets of 65 mg of elemental iron to bring up their iron levels. Ferrograd is one of the more gentle preparations that you may be able to tolerate better (hopefully). You may also want to have your doctor check you for causes of blood loss, that may account for your low iron levels.

There is no relationship between the fat pads on your feet and RLS or ferritin.

Sent: Sunday, July 18, 1999 12:15 PM
Subject: Treatment of RLS by Sinemet and Permax or Mirapex?

My mother is 77 years old and suffers from RLS. She is currently taking 10/100 Sinemet ( 1 pill 3 times per day), and 0.05 Permax ( 1 pill 3 times per day also) . She usually takes 1 of the Permax with her last Sinemet to help her sleep. She wonders whether she should always take the Permax with the Sinemet or by itself , or whether she should take more than one of the Permax at night with her last Sinemet?

She is very sensitive to drugs and couldn't tolerate the 25/100 CR Sinemet due to terrible nightmares. Lately, she has been experiencing dizziness especially in the morning and feels this may be due to the drugs she is currently taking. Her neurologist doesn't want her to take more than 3 Sinemet per day and told her to play around with them. Sinemet seems to take so long to take effect and then when she does get some relief, it doesn't last very long.

We recently read about a drug, Mirapex and that many RLS sufferers had good results. What is your opinion? Also do you feel she would benefit from an osteo-support supplement? Could you offer any advice? We would greatly appreciate any help on this subject as my mom is miserable much of the time.

Thank you so much for taking the time to read this.

Sincerely,
Bonita K.

Medical Reply

Although your mother is on a small enough dose of Sinemet to avoid the major problems of augmentation and rebound, it is generally easier to take only one Parkinson's disease drug at a time for RLS (unlike for Parkinson's disease). Mirapex is a much better drug than either Sinemet or Permax. It works much better and has fewer side effects for RLS patients. My advice would be to have your neurologist change to Mirapex (or its cousin drug, Requip) and drop Sinemet and Permax.

Darvocet (or another mild narcotic) or Ultram can be used to help her until she builds up to the correct dose of Mirapex (see our RLS Treatment Page for details on how to gradually increase the Mirapex dose). Bedtime sedatives such as Ambien or Xanax may also help in the interim.

I am not sure what your mean by "osteo-support supplement", but most supplements do not have a benefit for RLS.

Sent: Sunday, July 18, 1999 8:08 PM
Subject: Residual daytime leg aching after successful treatment of RLS with Mirapex (see previous letters May 7 and June 1, 1999, Page 19)

I have written to you twice before, first on May 7 and then again on June 1, because I was experiencing severe aching in my legs which I thought was due to the rebound and augmentation effects of taking Sinemet CR 50/200 three times a day. Both letters and your responses to them appear on Page 19 of your RLS web site. Before writing to you on May 7 but armed with information from your website, I was able to convince my neurologist to take me off Sinemet and start me on Mirapex, which he gradually increased to .25 mg four times a day. Mirapex is working very well in eliminating my nighttime RLS.

However, pleased as I am to have the problem of nighttime RLS solved, I would still have intolerable aching in my legs all day long if I hadn't developed a system of wrapping my leg very tightly with Ace bandages over a thigh-high surgical stocking with 30-40 mm Hg compression immediately upon rising in the morning. I need to do this on only one leg to get relief in both legs. I then take a 50mg Ultram at noon and another again at 6 P.M.,   each before the aching sets in. If I wait to take it until the aching has already started, the Ultram is almost useless. Some days I do have to take a third Ultram.

I have not taken any Sinemet since the middle of May, so it would appear that the cause of my aching legs may be due to something else. However, the onset of the aching began within a month of first starting on Sinemet last October and got increasingly worse each time the dosage was increase,  exactly mimicking augmentation and rebound from high dosages of Sinemet. That would seem to be an amazing coincidence if Sinemet were not the culprit. In addition, I only learned of the rebound and augmentation effects of Sinemet months after the aching started, so I was in no way anticipating it. Could it be that there was something latent in by body that Sinemet touched off? I can think of no other answer.

The good news is, of course, that Mirapex has taken care of my nighttime RLS. My husband tells me that my leg-jerking movements have virtually stopped, that I seem to be sleeping more peacefully, and that I have even stopped snoring! I also find that I fall asleep at bedtime very readily now, whereas before I would not be able to get to sleep until 4 am and often even later.

My neurologist has not given up trying to find a solution for my aching legs and has scheduled an MRI later this month to determine whether spinal stenosis might be the cause. He also thinks that my RLS and aching legs could have some relationship to each other. Do you think that's a possibility?

I do have some other questions: If I should continue to need Ultram for the rest of my life in order to cope with the aching, can it safely be taken on a long-term basis? Are drug holidays required with Ultram to avoid increasing dependence on it? Do you see any danger in wrapping my leg very tightly with Ace bandages as long as I have the surgical stocking underneath to prevent the bandages from cutting into my leg? I take the bandages and stocking off when I go to bed at night but I do wear them for the better part of each day. Wrapping my leg so tightly with the Ace bandages concerns me because I have been taking Tamoxifen since 1988 when I had breast cancer surgery.

I will probably not need to write to your again since my RLS problem seems to have been solved. I want to thank you for the help and advice you have given me. If it weren't for you and your website I would probably still know next to nothing about how to deal with RLS. I know there are countless others who feel the same as I do and are very thankful that someone like you has cared enough to give us the help and hope we have needed so desperately.

With many thanks,
Rita B.

Medical Reply

It is very difficult to assess the cause of your residual daytime leg aching. It could easily be due to RLS, or some other problem, such as spinal stenosis. From your story, I do favor it being due to your RLS. It is quite possible that the Sinemet did trigger the problem, which may persist even after the Sinemet is stopped. There is no good explanation for this phenomenon, but many things seem to trigger RLS problems.

There should be no problem with wrapping your legs. It is similar to wearing support stockings for varicose veins that actually help prevent blood clots.

Drug holidays are necessary for Ultram. Some patients take a narcotic (such as Vicodin or Tylenol with codeine) during the 2-3 days of the drug holidays for Ultram, but we are not sure whether or not this is as good as a true drug free holiday. However, most patients seem to do well in the long run alternating narcotics and Ultram.

Sent: Tuesday, July 20, 1999 11:10 AM
Subject: Re: RLS (see previous letter, Page 20, June 23, 1999).

Thanks for the response. I did show my doctor your response but he said to go ahead & try the Sinemet. Well, it doesn't seem to be working. And the Klonopin I only take if I really need it. When I do, I take 1/2 a pill because it makes it so hard to get up in the a.m.

My doctor gave me Vicoprofen (Vicodin and ibuprofen) which works very well, especially if I take it as soon as I feel it coming on. I have take as few as none and as many as 3 per day. I called today to have this refilled & he said that he doesn't want me taking this for RLS.

My questions is what to try next. I have tried many dollars in different meds. The Vicoprofen really helps me a lot. I don't mind trying Mirapex or Requip as you last suggested but why are doctors so afraid to give you what makes you feel better?

Kellie L.,
Spotsylvania, VA

Medical Reply

Doctors do not like prescribing narcotics on a long term basis due to the significant probably that many of these patients will become addicted (and thus tolerant to) to the narcotic. This can be prevented by using the narcotic until only about 90% of the RLS discomfort is gone and by taking regular drug holidays. Ultram can also be substituted for the narcotics to help prevent addiction. The narcotics do however work very well for RLS, but most doctors do not understand RLS well enough to feel comfortable prescribing this class of medication for this disorder.

Mirapex and Requip often work so well that most patients will then not need the narcotics, so most RLS specialists feel that this is a better way to go. Again, Sinemet is rarely used by RLS experts and should be used with extreme caution for this disorder.

Klonopin is already causing daytime sleepiness, which is the typical problem when using this drug for RLS. As in my previous letter, I strongly suggest that you have your doctor change you to Ambien or Xanax.

Sent: Wednesday, July 21, 1999 1:55 AM
Subject: Obtaining drugs (Mirapex) in the UK for RLS.

It is now 1.39 a.m, and once again I find myself walking the floor with this RLS. I have now suffered for over four years with the condition, and not sure if it is my location which is England, but can find no doctor to help relieve the pain that I go through each and every night.

I have tried Quinine which did nothing, and I am now taking Panadol Night time, which is doing nothing. When I went back to my doctor and asked for his help, his reply was, "Well what do you want me to do about it", my reply was help!!!. What I would like to know if I can obtain "Mirapex" in the U.K or is it just used in the U.S. Would I need to take anything with the Mirapex? I am already taking "Carbamazepine" so would have to be careful what is mixed with this.

Help!!! I am now getting desperate as it has been over four years since I had a decent night sleep.

Victoria D.,
United Kingdom.

Medical Reply

Quinine rarely helps RLS although it is good for muscle cramps. Panadol Nighttime (acetaminophen with an antihistamine, similar to our Tylenol PM) has a better chance of worsening RLS as it contains an antihistamine. Carbamazepine (Tegretol) is an anti-convulsant that has a minor role in treating RLS.

I am not sure whether or not Mirapex and Requip are available in the UK, but Permax (Pergolide), which is similar, should be available and works almost as well. This class of medication should take care of your problem. You may also want to consider a small dose of a narcotic and sedative at bedtime until you get to the correct dose of the Parkinson's disease medication.

A Reply from Victoria D.

Sent: Wednesday, July 21, 1999 5:43 PM
Subject: Re: In reply to your email

Many, many thanks for your email and the information contained their in. I feel that perhaps I miss lead you in thinking that I was taking "Carbamazepine" for the "RLS" when in fact I take it for convulsions that I have been experiencing since I suffered a stroke over three years ago.

I feel much better armed now to return to my doctor with the information that you enclosed in your reply and perhaps move another step closer to getting some relief.

May I thank you once more for being their when I need to ask these questions and get the information....perhaps in time we can start to educate doctors into taking this condition seriously....and end this dreadful horror of the night.

Kind regards.

Victoria

Sent: Tuesday, July 20, 1999 9:34 PM
Subject: Do I have RLS?

Having just been introduced to the excitement of the internet and the information that is available, I would like an opinion as to whether I am a RLS sufferer or not.

I am a 66 year old Caucasian male and my symptoms are a nocturnal "drawing" (a term my mother liked to use) or aching in my femoral (?) or frontal upper leg muscles at night in bed. This aching can also occur in the theater or when driving long distances. It is somewhat alleviated by walking around or by stretching my leg(s) behind me as some runners do. The analgesics, Tylenol or Darvocet, are a great help.

Again, my first question is: Am I an RLS person? What is your opinion out there?

Medical Reply

You have most of the symptoms of RLS sufferers. If in addition to what you have described, you also have an almost uncontrollable urge to move your legs whenever you are at rest (and especially in bed), then you meet all the criteria for RLS.

Sent: Wednesday, July 21, 1999 4:28 AM
Subject: Desperately Seeking Advice

I am a 31 year old male from Scotland now living in Australia. For as long as I can remember I have always had restless legs. It is only a few days ago that I discovered there was such a thing as "restless leg syndrome" and therefore now know that I am not on my own.

I have never met anyone with this problem and therefore am posting this message in the hope that someone can give me some advice.

My symptoms are not so acute as too prevent me from sleeping although they have been getting a lot worse of late. I have always had back problems which are due to playing golf. I have been diagnosed as having two mildly prolapsed discs in my lower back and have always assumed that this was the reason for the restlessness of my legs. My leg symptoms are exactly as those explained in the www.rls.org website and therefore I am now thinking that my back condition is perhaps not the reason for legs behaving like they do.

I have never been able to sit still for any length of time. I have always had difficulty trying to explain the sensation to people as it is quite bizarre. It is like a slightly cramping up of the legs, as if they are going to sleep, and the only remedy is to move them. It is only recently my condition has really started to concern me as the muscles in my legs have now become very tender to touch. My calves, thighs and hamstrings are sore to touch and no matter how much I stretch and exercise I cannot seem to relieve the tightness. Is this tightness a common symptom among RLS sufferers? The disappointing thing is that I have been consulting numerous specialists over the last few years spending thousands of dollars without any success.

Can anyone please tell me if they also have similar symptoms to me and if so be kind enough to give me some advice. I have been unable to play golf for one year now and this saga is becoming extremely concerning. I do not know if my back condition is exaggerating my leg problems or if my leg condition is exaggerating my back problem.

Thanking you for your kind attention to this matter.

Paul R.

Medical Reply

It does sound as if you have RLS. If the leg pain does go away or gets better with movement and you have a strong urge to move your legs when at rest, it makes the likelihood of you having RLS very high.

A small percentage of RLS sufferers do have tender muscles in the legs, but the majority only have a discomfort that is hard to describe which is not affected by touching the leg. Your leg and back problems are likely independent and non-related conditions.

The best treatment is Mirapex or Requip, but if that is not available in Australia, then Permax (pergolide) is a good alternative. See our RLS Treatment Page for more information on how to use the drugs and alternative drugs for RLS.

Sent: Wednesday, July 21, 1999 7:53 AM
Subject: Restless Leg Syndrome

As a child, my evening routine included hearing my father's plaintive cry, "My legs hurt." I did not then understand. Regrettably, I now do. Many of my tales of the endless and unavailing pursuits of remedies, of the all too frequent visits to bemused and misinformed physicians, and of the never ending night time ordeals already have been recounted by other sufferers. Change their names, and you have my stories. Why, then, this message? Three reasons.

The first is to commend you for your excellent work. Much of the solace that I derive is attributable to the compassion, understanding, and generous sharing of information that I find on your web site. Very well done, and much appreciated.

The second is to share an observation that I believe may lead to a more accurate diagnosis of restless leg syndrome. In my opinion, much of the literature mischaracterize a principal symptom of restless leg syndrome to be, "an irresistible urge to move one's legs." Hardly, in my experience. Rather, the symptom better is characterized as, "a great discomfort in the legs (or other limbs) while the legs (or other limbs) are kept still." The compulsion to move arises as a result of the unbearable discomfort caused by remaining still. The decision to move, however irresistible, is consciously made to seek relief. Except in the case of the related, but different disorder known as Periodic Leg Movement in Sleep, the movement is not the symptom; rather, it is the temporary cure. I am not a medical professional. However, I am unaware of any other major medical disorder whose symptoms are characterized by the cure. For example, the symptoms of diabetes do not include the use of a syringe to administer insulin. Likewise, the symptoms of a broken bone do not include the administration of a plaster cast. And who would describe a symptom of polio to be the use of a wheel chair to get about? Perhaps my point is subtle. Nevertheless, given the medical profession's general lack of information about restless leg syndrome, every little bit helps.

The third is pure selfishness. I live in the Washington, D.C. Metropolitan Area. I have had less than satisfactory results with the many health care providers that I have consulted over the years. Those consulted include one or more internists, orthopedists, cardiologists, and neurologists (including so-called sleep disorder specialists at university hospitals, and at private sleep and pain clinics). A recent call to another supposed expert neurologist eventuated in advice that I would have to wait at least four months for an appointment. My local support group recently disbanded. Any suggestions on how to find a competent health care provider in my area? Please don't suggest a university hospital.

Thanks much,
Jerry

Medical Reply

You are probably quite right about the medical description of RLS including "an irresistible urge to move one's legs" as one of the principle symptoms of the disease. A much closer analogy is the "irresistible" urge to move your hand after you hit your finger with a hammer. Just as with RLS, the urge to move is part of the "cure", but it does originate from the painful stimulus.

However, the real reason that this so called symptom of RLS is included so prominently, is to help the uninitiated doctor (which unfortunately includes almost all doctors out there) diagnose RLS by differentiating it from other disorders that are associated with pain the limbs (leg cramps, blood clots, bruising of the leg muscles, fibromyalgia, reflex sympathetic dystrophy, etc.), but which do NOT cause this urge to move your legs for relief. If it helps these doctors identify more RLS sufferers out there, then it is definitely worth keeping as part of the description of the disorder, at least until the medical professionals are better educated on RLS.

It is more difficult to help you on your last problem with finding a good RLS doctor. You are right that even many sleep specialists are not well versed in RLS. I usually have you next check with fellow sufferers in your local support group, but if that has disbanded, then your plight is quite tough. You may want to check with other support groups outside your area by logging on to the RLS Foundation's list of support groups in the United States.

You do not necessarily even need a sleep specialist. Many RLS sufferers have done well with a sympathetic and interested family doctor who will read and act on the information available on this web site.

Sent: Wednesday, July 21, 1999 5:08 PM
Subject: RLS and Serzone see previous letter Page 20, June 22, 1999).

Since I stopped taking Serzone and started on St. John's Wort, I have not had symptoms of RLS. I firmly believe that anti-depression prescriptions contribute to the problem. Maybe the amount of the drug is the deciding factor.   As I was only on a small dose of Serzone , maybe a larger dose would have alleviated the symptoms. I greatly appreciated the info I found on line about RLS .

Thanks,
Nancy B.

Medical Reply

For many, even a small dose of certain medications (even ones that may help other RLS sufferers) can cause significant worsening of their symptoms. Once you identify a "bad" drug, stay away!

Sent: Wednesday, July 21, 1999 8:37 PM
Subject: Do pain relievers cause problems with blood pressure?

Can you tell me what effect (if any) do pain medications have on blood pressure? Someone has made me very nervous about this lately! Thank you for your helpfulness.

Medical Reply

Pain medications should have almost no direct effect on blood pressure, except to perhaps lower the pressure, if it was elevated due to pain/discomfort.

Sent: Saturday, July 24, 1999 9:15 PM
Subject: PLMS better with Mirapex, but still waking up at night (see previous letter, Page 20, July 12, 1999).

This is my third letter to you (7/12/99 and 7/13/99) and I hate bothering you, but I'm stymied. My main problem is PLMS. I do have RLS as well but not severe. My RLS has been helped a lot with Mirapex and my dosage is .625 mg one hour before bedtime. At bedtime I take two Clonazepam 0.5 mg tablet because I keep waking up every 90 minutes or so.

I am feeling a little better in the morning, however this waking up all night long is tiring, annoying and I don't understand why I am waking up so much with all of the medicine that I'm taking! I did catch a cold during this time unless that is why my sleep is still messed up. The only other meds that I take are in the morning, is Synthroid .125 mg, Prempro and Premarin 0.625 mg .

Before I got the prescription for Clonazepam, I asked my GP to prescribe temazepam (as my neurologist was on vacation). It worked for 5 hours for two nights and than quit. I find that I'm feeling a little better during the day and I don't have the wiggling and jiggling as much and feel much more calmer. However it really bothers me that I don't sleep through the night anymore. Any comments to why I'm still waking up?

Sincerely,
Taffar, 50
Tarpon Springs, FL

Medical Reply

It is very difficult to say why it is that you are waking up so many times at night. The only way to tell would be to have a sleep study and see if it is the PLMS that are causing arousals that result in your awakenings. Normally, when you are sleep deprived from many PLMS, you do not wake up long enough (1-3 seconds) to remember the awakenings. Perhaps, now you are getting better quality sleep so that the PLMS now cause prolonged awakenings.

Be careful with the Klonopin as you can become tolerant/addicted to this medication. Drug holidays on Klonopin require 5-7 days compared with 2 days every 2 weeks for others such as Xanax. It may be better to back off completely from sedative medication until you have a sleep study.

A Reply from Taffar

Sent: Sunday, July 25, 1999 5:42 AM
Subject: Re: PLMS, awakenings, and Mirapex.

For what it's worth, my sleep study showed severe PLMS and nothing else; or am I misunderstanding your meaning of your letter? However, you've raised a question: If I am getting better quality sleep AND the PLMS IS causing prolonged awakenings, than what? more Mirapex?

Taffar, 50
Tarpon Springs, FL

Medical Reply

Although your previous sleep study showed PLMS, we do not know now that the if PLMS problem is still active at night, or if it is, if it is the cause of your awakenings. Therefore, it is very difficult to advise you about increasing the Mirapex at bedtime. It might be worth a one week trial to increase the Mirapex and then see if your sleep improves (obviously much easier and less expensive than a sleep study).

Sent: Sunday, July 25, 1999 9:33 AM
Subject: RLS and Klonopin and Sudafed.

Hi, I just found your site and must admit it is the best RLS related info I have seen. I am a 53 year old male and have had RLS symptoms since my teens. My doctor put me on Klonopin (1 mg at night) 3 years ago to control my leg jerking (which was annoying my wife whom I had just married). He never mentioned RLS. But I was web surfing a few weeks ago and found that there is such a thing and from its description I can say for sure I've had it for as long as I can remember and learned (by experimentation) to live with RLS by employing most of the methods mentioned many times: knee-bends, stretching, mild exercise, avoiding caffeine, antihistamines, etc. But I never could completely avoid problems getting to sleep and leg jerking at night.

Although Klonopin does not seem to make me drowsy during the day, I have noticed a loss of concentration which I now believe started when I was put on Klonopin. From what I've read here, I should ask my DR. about using Ambien or Xanax.

One of the "treatments" I read on another site mentioned ephedrine. This rang a bell with me -- I have never been able to tolerate antihistamines (now I know these aggravate RLS), but I wondered about pseudoephedrine (Sudafed), so I tried taking one. Formerly this would have kept me up half the night, but I guess the Klonopin counteracts its effects and I have no problem sleeping. The nice thing is that I suffer from mold allergies and pseudoephredrine does give me real relief AND it seems to counteract the lack of concentration effects of Klonopin. I haven't felt better in years.

Some observations I've had over the years: RLS feels like I am trying to suppress a reflex reaction (my doctor says I have very good reflexes, but I wonder what they are good for). Very small irritants cause RLS to kick in. Some examples: need to urinate, bowel disturbances, need for sex, insect bites on the back of my legs, pimples on by back, ingrown hairs (on my legs or even on the back of my neck). In fact, when I feel RLS coming on (day or night), if I ask myself "what is bugging me?" I quite often find I have some such thing irritating me. I was wondering, is this common, and maybe, more to the point, is it possible that while subconsciously suppressing an irritant, one causes RLS to occur (maybe it's the body's way of saying "pay attention to the problem").

By the way, I have found that RLS is rather common (diagnosed and undiagnosed) in my profession (computer programming). At least three (out of 8) persons I have talked to at work have RLS and I know of very many others I have worked with over the years who were always getting up and walking around or otherwise restless. Maybe the high concentration required for this kind of work attracts RLS victims because it does avoid RLS while you are really working and thus is "enjoyable".

Thanks for listening. Keep up the good work,
Al

Medical Reply

Your thoughts about suppressing an irritant may cause RLS to worsen is interesting, but we do not know anything about this. With RLS there are often more questions than answers. You are right that RLS is very common. Studies have found that it occurs in 5-15% of the adult population.

We find that computer work (including computer games, business work, programming, etc.) seem to quell the RLS symptoms. This may be due to an override by higher cerebral brain centers. Only further research will help us understand this phenomenon.

It is a good idea to change from Klonopin. Taper down slowly while substituting Ambien or Xanax. Remember to take regular drug holidays of 2 days off every 2 weeks.

Sent: Sunday, July 25, 1999 1:43 PM Subject: RLS and thrombosis or phlebitis?

HOw happy I am to have found you. I have had RLS all my life, but didn't know it had a name. My mom used to rub my legs with rubbing alcohol when I was a child. It did help some, but doesn't now. Mine has been worse lately and I don't dare try to watch a movie. It is too much work! Wiggling, squirming, etc. I have to keep moving my leg and look like a contortionist. It is only in one leg lately and that foot is numb on top. Does numbness go along with it? Does it ever lead or go along with thrombosis or phlebitis? My mom had RLS and then thrombosis which led to her death. I can't find the place to ask the doctor, on the website.

Peppy

Medical Reply

Numbness is not a common problem with RLS, but some RLS sufferers do experience this symptom. It does not lead to thrombosis or phlebitis (blood clots in the legs).

There are lots of medications that help. Have your physician consider Mirapex as therapy for your RLS.

Sent: Sunday, July 25, 1999 8:23 PM Subject: RLS

I was just diagnosed with RLS last week, and after reading the letters in your website, I feel that the diagnosis is perfectly accurate.

Just a brief history: When our third child was born, I was able to talk my husband into a vasectomy. I then went off the pill. My complexion worsened, so my dermatologist put me on Spironolactone, 2 pills, once a day, 50 mg. total. That was about 1 year ago. Then this spring, I began experiencing constant low-grade headaches. After multiple tests (blood tests, MRI, CT scan, migraine medications, etc.) I was put on Effexor XR 75 mg, once a day. They made the headaches disappear. Now however, I am suffering with RLS.

My right leg has had a tingly, "creepy crawly" feeling on and off for years, mostly occurring after the birth of our second child in 92. During the past f2 weeks, I began to experience a daytime tingling which I can tolerate, but also a ongoing urge to shift the position of my leg every minute once I am starting to drift off to sleep. It is taking me 2 hours to fall asleep at night, minimum.

My doctor suggested over-the-counter Melatonin, 3 mg. Frankly, I can't see that it makes any difference. Sometimes I combine it with 800 mg of Motrin (my favorite drug - I have bad knees.) My doctor wrote a prescription for Klonopin (.25 mg) and one for trazadone (50 mg). I've yet to try either one.

I'm discouraged because I believe that the RLS is being magnified by the Effexor. I tried dropping down to 50 mg of Effexor, but the headaches immediately returned. In the meantime, I can't help but observe that the RLS and resulting sleep problems must be adding to my depression! I feel trapped in a vicious circle.

Incidentally, I'll be taking a 2 week vacation starting on Aug. 1. The first 4 days will be all driving. The thought of sitting for hours plus trying to sleep in unfamiliar beds is making me truly afraid.

Help!

Ann Haines, age 37,
Minnesota

Medical Reply

You may be right about Effexor causing your RLS to be worse. Antidepressants can cause RLS to be better or worse. In your case it clearly sound as if it is making you RLS worse.

Klonopin is not the best for RLS. Consider Ambien or Xanax. Trazadone, as with any antidepressant, can make RLS better or worse.

If you do need medication after getting off of Effexor, consider Mirapex. You may not need the Effexor as much if you sleep better when the RLS problem is improved.

Sent: Monday, July 26, 1999 8:13 PM
Subject: A long overdue response (see previous letter, Page 20, June 26, 1999).

First, please accept my apologies for not getting back to you sooner. I've suddenly become involved in doing web graphics design for some people and that's been consuming most of my spare time (but I'm about to be "published" and I'm very excited about that).

Thanks for saying that it sounds like I know what I'm doing! I appreciate that, though everything I know about RLS and treatments for it comes from you! :-) From what I've seen, the Southern California RLS site has absolutely the most up-to-date information, as well as the most practical. I participate in message boards for Fibromyalgia/CFIDS and anytime anyone asks about "twitchy legs" or whatever they choose to call it, I refer them to your site. They've always been grateful to find such a place, as have I.

I find it unfortunate that I need to educate my doctors though (I've had to do that with fibromyalgia, too), so I've become something of a web researcher in my spare time. It's actually worked out very well for me because I've finally learned that doctors generally don't "know it all" and that I've got to be an advocate for myself. I know I wouldn't have made the progress I've made over the past three or four months without learning to stand up for myself.

An update on the neurologist. He saw me a couple of weeks ago and I'm definitely unhappy with him. He told me that, after another three months on Mirapex, he would take me off it to see if the RLS comes back (he always refers to it as Nocturnal Myoclonus...my understanding is that this is an "old" term for RLS and PLMD combined, more or less, and that now, PLMD and RLS kind of stand alone without that name. When I correct him and say, RLS, he always says "yes, whatever" and moves on).

He says that, if it comes back, he's going to run a bunch of tests on me -- CT, brain MRI, and several others because he NOW suspects that I actually am experiencing myoclonic seizures. Huh? I've never had a seizure in my life, nor has my dad, nor did his mother. There's no history of seizures of any type in my family anywhere (unless the husband of an adopted cousin of mine counts...and somehow, I don't think that does!).

Well, anyway, I'm a little cranky about that because I just don't see where he's getting this from and I'd rather start with a sleep study if I'm going to have any testing done. So, I'm shopping for a new neurologist.

I've taken enough of your time and you're extremely gracious to spend so much time with everyone who writes to you (I know how tired I get when I respond to people over and over about pain meds or sleep meds or alternative treatments for FMS, so I give you much credit for having to basically write the same thing over and over again, when the same problem with the same response is partway up the same page). I have yet to run across a site where a doctor spends so much of his time with people who just write in, and I think we all appreciate it...I know I do. Funny how the internet has changed our lives so much in the past few years.

Carol E.

Medical Reply

Nocturnal Myoclonus is the old name for PLMD, not for RLS or any combination of RLS and PLMD. If Mirapex has helped your RLS, then I can see no real reason to stop the medication to see if the RLS comes back. That type of thinking comes from a doctor who believes that RLS doesn't really exist and wants to prove it to himself again. There is no need for EEG's, MRI's, or CT scans to diagnose or confirm RLS. It is purely a clinically diagnosis based on your symptoms and even the response to medications such as Mirapex.

I am not sure why your doctor thinks you may have myoclonic seizures, except for the fact that it sounds similar to the old name for PLMD, nocturnal myoclonus. I do not know all the details of your case, but I think you are correct (yet again) to seek a second opinion.

Sent: Wednesday, July 28, 1999 6:33 PM
Subject: Niacin for RLS

My wife has had a major problem with RLS for a while. We found that taking 100 to 200 mg of niacin about 20 min before bed does the trick 90% of the time. It causes a skin flush in her face, arms, and legs, and seems to prevent the problem.

Tom, NJ

Medical Reply

Thanks for your personal treatment for RLS. Niacin may also lower cholesterol, so it can possible do double duty for RLS sufferers. The flushing however, may make this treatment unacceptable for many.

Sent: Friday, July 30, 1999 12:38 AM
Subject: Requip (see previous letter this page, July 17, 1999)

I am afraid that my honeymoon with Requip may be over! I'm waking up after 2-3 hours now; and during the day when I'd love a nap, one pill (.25 mg) doesn't always work. Generally I'm much more tired now . I have not increased the dosage past 5-6 pills per 24 hrs. Is this enough?

I've dropped the Ambien because my new doctor said to, and now take 1 Kava, in addition to the .75 mg of Klonopin, which agree I need since I can't take Xanax.

Am I taking enough Requip? What about Kava? (I've only been on that 3 nights, but have you any thoughts about it?

Thanks as always,
Anne G.

Medical Reply

Some people do get tolerant to even medications such as Requip. You can try to alternate Requip and Permax, as there is no cross tolerance between these 2 drugs. We do have anecdotal reports of Kava Kava helping, but this has not been studied yet, and most who have tried it have not gotten relief.

Ambien is a better drug (for most) than Klonopin, so I am not sure why your doctor does not want you to have it, unless it does not work as well for you as the Klonopin.

Sent: Friday, July 30, 1999 6:17 AM
Subject: Eldepryl (selegiline) for RLS?

My doctor prescribed Eldepryl for me to try for PLMD. I've taken all of the other Parkinson's drugs listed in your web site; they work great, but I develop tolerance to them without fail. (Drug holidays have almost no effect.)

My doctor tells me that his patients with Parkinson's Disease who take Eldepryl often take it early in the day because it keeps them awake. Can you advise me on this? What time do RLS/PLMD patients usually like to take Eldepryl?

Thank you kindly,
Mike

Medical Reply

Eledpryl has not really been studied or used for RLS. It is useful for Parkinson's disease, but likely has no role in RLS.

This medication is different than the other Parkinson's medication listed above. It does not work directly through the dopamine system, but is a MAO (Monoamine Oxidase) inhibitor. The MAO type B enzyme (which is inhibited) is responsible for the breakdown of dopamine in the brain. In Parkinson's patients, this medication is given only to patients who are on Sinemet and need additional help (the Sinemet dose is usually then decreased) .

If it works for you, let us know, but I am not sure that it will help your RLS. As for what time of day to take the Eldepryl, I cannot say. In Parkinson's disease, the increased dopamine is needed all day, but in RLS, mainly at night. It is not always possible or correct to use the information for a drug in one disease and apply it to another.

A Reply from Mike

Sent: Friday, August 27, 1999 3:39 AM
Subject: Selegiline Results

This note is the follow-up I promised last month on my experience with selegiline.

The selegiline, taken by itself, effectively dampened the limb movements that kept me awake at night. I took only a very small dose,1/4 of the small 5 mg tablet. (I have a dandy pill chopper.)

But I was unable to use the Selegiline for my PLMD because of the side effects. The drug gave me an unrelenting, sick headache, no matter how small a dose I took. The headache was unaffected by aspirin or Tylenol and persisted for about a week after I discontinued the drug.

I hope this helps.

Mike

Sent: Wednesday, August 04, 1999 8:07 AM
Subject: Treatment of adolescents (see previous letter, Page 20, June 17, 1999)

I want to follow up on a note I recently sent you regarding my 13 year old son. To review, I have RLS and he has ADHD. It seemed the logical next step to have him evaluated for RLS as I had already seen him moving, flopping around, pulling all the covers off the bed, etc. But I was amazed at the outcome of the interview with my doctor. My son never once used any of the classic phrases seen here such as "creepy crawlies", "electric tingling", etc. - even when she asked him very direct and specific questions.

Furthermore, he doesn't seem to feel "the compulsion to move his legs". Or at least he's not aware of it. Both my physician and I were surprised, to say the least. She then put him on the bare minimum dose of Klonopin - almost experimentally - just to see if it settles down his nights at all, but was also of the opinion that this isn't the same thing she is treating me for.

So, now I'm almost back to square one. I have a fidgety 13 year old with ADHD; who is the classic example of "not a morning person"; who seems to be OK on quantity of sleep, but not quality; who tosses and turns - sometimes 180 degrees; etc. Add to that, puberty and the seemingly natural desire of teens to stay up till 03:00, then sleep till 12:00, and I've got someone who is destined to have problems at school.

We're currently forcing a sleep routine on him to coincide with the medication, but if this truly isn't RLS, then our only other thought is that a full blown sleep study is next. I'd welcome any other ideas you might have. Thanks again for being such a great resource !!

Medical Reply

It should be easy to determine whether or not a 13 year old has RLS (that is once you suspect it and ask the correct questions, such as you have done). If your son suffers from RLS, he would have trouble falling asleep due to the unpleasant sensations in his legs, but once asleep, he would likely sleep well until the morning. RLS does not disrupt the nighttime sleep unless you wake up and then can't fall back asleep due to the discomfort.

The bigger concern would be to rule out whether your son has PLMD, which could cause frequent arousals, thus preventing good quality sleep. This may be impossible to tell from just observing him asleep. A sleep study would be the only way to decide whether he does have PLMD and if the PLMD is causing disturbed sleep. Your son's doctor and you can decide if a sleep study is necessary.

Teenagers have sleep cycles that make them want to go to bed late and not function well early in the morning.  That may be a big part of his problem.

Sent: Thursday, August 05, 1999 12:11 PM
Subject: Iron, low blood pressure and RLS (see previous letter, Page 20, July 05, 1999).

Could you tell me if there is any connection between having low blood pressure and my ferritin level. My blood pressure plummets to the point that I pass out and my ferritin level is at 30. Some one in the RLS group feels there is a connection, and thinks that could be making my RLS worse. What causes low blood pressure and what can one do about it?? Thank you in advance.

Medical Reply

There is no known connection between low blood pressure and low ferritin levels. Low blood pressure is usually caused by medications or by dehydration.

Sent: Saturday, August 07, 1999 10:25 AM
Subject: Mirapex

I have had RLS for four years and my doctor has me now on Sinemet 25/100. He knew nothing about augmentation or rebounding and said I would be fine. Now I've read on different sites that about 85 percent of the people who take it have problems. Is Mirapex really that much better and should I be suggesting that?

I kick at a rate of about 35-40 kicks a minute for 4-5 hours a night. I also had secondary fibromyalgia due to cervical stenosis and had surgery for that. I was wondering if these drugs affect that recovery in any way. The legs, my neurologist told me, should clear up as they came on when the stenosis got really bad, but it could be months until everything settles out. Would Mirapex be a better choice?

M.A.

Medical Reply

Mirapex generally does work better than Sinemet. If the Sinemet is working well, and your dose is less than 3 of the 25/100 tablets per day, then you may not have to change, as this is a safe dose.

Sent: Friday, August 06, 1999 2:31 PM
Subject: Treatment for RLS

I am a 69 year old male who has suffered with the problem for a dozen years. My recommendations to minimize this CIRCULATION problem:

1) Stand 12 inches from an open door jamb, with one hand on either side, lower your torso through the opening, KEEPING YOUR FEET FLAT ON THE FLOOR. This stretches the calf muscles. About 5 minutes would be a minimum for this.

2) Good old aspirin. It is an effective blood thinner. Take no more than 6 if you don't want a stroke. I sometimes get by with just 2. To speed absorption , eat something. On a diet? air popped corn won't hurt it and sleeping will be easier on a full tummy.

Good luck!
Wally.

Medical Reply

Thanks for your suggestions. We do not yet know that RLS is a circulation problem.

Sent: Saturday, August 07, 1999 11:13 PM
Subject: Cranio Sacral Therapy

Is there any instances where Cranio Sacral Therapy has helped eliminate RLS?

Deep massage has eliminated the strange feelings in my left arm and the itching. These sensations always accompanied my RLS. I am hoping more massage will help with the symptoms I have every night in my thighs and legs.

Any insights into this?

Medical Reply

There is no data on Cranio Sacral therapy and RLS. Massage has helped some, but this is not consistent.

Sent: Sunday, August 08, 1999 12:15 PM
Subject: Mirapex

I was wondering if you could advise me on Mirapex and drug interaction. I have Rheumatoid Arthritis and am on many medications to treat this. My doctor also suggest the use of Elavil to aid in improved sleep. I have found since starting on Mirapex my sleep is improved and uninterrupted by the RLS symptoms, and I do not require this or the use of periodic Tylenol #3.

Because of the need for several medications, I want to stay well informed, especially since many doctors are unfamiliar with RLS. I also have had a few days of stiffness and sore legs on arising in the morning and wonder if this is from the Mirapex. When I was on Sinemet, it felt like my muscles were more relaxed at night. Mirapex has totally eliminated daytime and driving RLS symptoms so well that I can now participate in activities that before I avoided, such as extended traveling or chaperoning my children's overnight school activities.

I had been on the Sinemet so long my rebound and augmentation symptoms were severe. I recommend to anyone currently taking Sinemet to discuss with your doctor about switching to Mirapex or Requip.

Thank you for your time,
DS, IL

Medical Reply

Elavil may induce sleep, but has a greater chance of worsening RLS than helping it. The only drug that has an interaction with Mirapex is Tagamet (cimetidine), which causes the a 50% increase in the blood levels of Mirapex. Otherwise, Mirapex is amazingly devoid of drug interactions (so far).

Sent: Sunday, August 08, 1999 6:47 PM
Subject: RLS AND PLMD!!!!

Hello my name is Linda. I was diagnosed with RLS and PLMD almost five years ago. I fell at my job site. About 6 months into healing from the fall. I started to have what I thought was muscle like spasms or jerking.

I was woken out of a sound sleep with this going on. My husband had to hold me down in bed so I wouldn't flip out of the bed. He explained it to doctor that I was like a fish out of water.

My doctor started running test and put me on muscle relaxers. Which didn't work. He found nothing with the test. So he sent me to a neurologist. He started doing test to find the problem. He did a MRI of the brain and spine. He found white matter lesions in the parventricular and periventricular regions of the brain. Thinking after finding them that I might have MS or Lupus or lime disease. Then I had a spinal. Finding nothing there. He sent me to another specialist to rule out lupus or any connective tissue diseases. With no answers there. He decided to do a sleep study. They found that I have these disorder's and very bad.

I have a lot of head pain and shocks like feeling run through my body. Starting at different places each time. Bolt's of electricity is what it feels like. It Makes my mind and body very tried and does not work very good after the shocks happen. Sometimes the shaking and jerking causes me not to be able to do much or anything for myself. I have no warning when it is going to happen and be a bad day. It just happens. Can't plan ahead not knowing what the day or night going to be like. Just take it one day at a time. It runs your life for you. I am only 46 now and I have a lot of years left to enjoy. I hope there will be some answers about these disorders soon?

I use to be a walker 4 miles a day. Worked! Now it is hard to just do basic stuff around the house and life. My doctor sent me to a specialist in San Francisco to check me out and he said he had know answers except that I have a very bad case of these disorders. It doesn't run in my family. I think the fall caused it to happen when it did. I was fine before that. I am currently on Mirapex 0.25 up to four times a day, Sinemet CR 50/200 at bedtime with Klonopin 1 mg at bedtime, we tried Iron Ferrous 325 mg up to three times a day for awhile with it making no change at all. I take Tylenol when I take the Mirapex it gives me headaches.

I also take Premarin, I had a complete hysterectomy 11 years ago. Nothing I try to do or not to do does not change the episodes. It does it no matter what. Sitting to long can make it worse. I have seemed to put on some weight since I started the Mirapex. I was wondering if anyone with these disorders have had a MRI and they found lesions in the brain? They still have figured that one out for me. Please let me know and answer or just respond to my history of this disorder and how it came about for me. I have tried other medicines that did not work at all. And taking nothing it comes back full force. Will be waiting to hear form you on the net.

Thank you,
Linda, Crescent City, California

Medical Reply

It sounds like your RLS and PLMD are being treated quite well. I am not sure if the new problems that you have been experiencing for the past 6 months since your fall have much to do with RLS/PLMD. A repeat sleep study might be able to tell if the PLMD is worse during sleep, causing your sleep to be disturbed.

RLS/PLMD are not associated with any known brain abnormalities or MRI/CAT findings.

Sent: Sunday, August 08, 1999 11:05 PM
Subject: PLMD AND REQUIP (see previous letter, December 3, 1998).

As per your advice, for my PLMD I started to take .25 mg of Requip at bedtime, a few days before. It seems to be working. I am getting better sleep and my Blood Pressure has come down to 140/90 area compared 160/100 area. In last couple of days I am getting up with mild tenseness around 6 am area. Both days, I took 2 (200 mg) Ibuprofen and 50 mg of caffeine (1/4 tablet of 200 mg caffeine tablet), went back to bed and then I woke up fully relaxed after 2 hours. Strange, but caffeine seems to help me whenever I have tenseness/headache. Without it, 2 Ibuprofen may or may not work.

I have a few questions. For PLMD (and no RLS) Is it OK to take Requip just before you go to bed or should I take an hour before bedtime ? How long it takes before it is effective against PLMD ? How long (in hours) its effect last ? Is it possible that PLMD occurring before Requip is effective, causes early morning tenseness ? or is it PLMD occurring after its effect wears out ? Should I be increasing my dose ? If yes, by what amount ?

Recently my family doctor ordered the oxygen study. As per him, my oxygen level seems to drop at some points during my sleep. Can this be the cause of tenseness at 6 am area ? He has referred me to a sleep specialist. My PLMD was diagnosed in 1995 by same specialist. Can this drop in oxygen level be associated with PLMD ? Can it be overcome by increased dose of Requip or is it a separate problem ? I will greatly appreciate any suggestions about what should I do and what should I ask my sleep specialist ?

Thanks a lot,
Jack

Medical Reply

Requip will work on your PLMD within 30-60 minutes. It is likely alright to take the medication just before going to bed. Any problem with PLMD until this kicks in should be minimal. It is very difficult to know whether or not the Requip is not controlling all the PLMD, but it is very likely that the PLMD is not associated with your morning feelings of being tense.

Unfortunately, only a sleep study (while on your usual dose of Requip) can tell whether or not you are having PLMD that is causing a sleep disturbance. If you physician agrees, you could try to double the Requip and see if it helps your problem.

The sleep related oxygen problem has nothing to do with PLMD. Low oxygen levels may cause mental problems the next day and should be investigated.

A Reply from Jack

Sent: Wednesday, August 11, 1999 10:20 PM
Subject: PLMD and Requip.

Thank you for your prompt reply. I am still wondering about how long one .25 mg Requip taken at bed-time will be effective ? I see letters where people are taking up to 4 Requip or Mirapex tablets in 24 hours. I am just taking one .25 mg Requip at bedtime and no more during the day. It gave me perfect sleep for several days.

Also it made it clear, as you had suggested, that disturbed sleep due to PLMD was causing high blood pressure for me. I am wondering if other RLS/PLMD sufferers have such a problem. Please clarify how long (for how many hours) one dose of .25 mg Requip will be effective in preventing PLMD. I assume that tenseness/headache in early morning is not created by Requip; otherwise I would have experienced it in first few days of starting the drug. Should I try Mirapex ?

Thank you very much,
Jack

Medical Reply

The length of action of Requip will vary considerably with the individual. Generally it will last an average of about 4-8 hours. If the bedtime dose is increased, the duration of action may be considerably longer.

There is no reason to change to Mirapex, unless an adequate dose of Requip is not helping. The two drugs tend to be very similar. Again, I do not think that your morning complaints are related to Requip.

Sent: Tuesday, August 10, 1999 9:04 AM
Subject: Klonopin Side Effects

Thanks for your suggestion to change from Klonopin to Ambien. The reason I got looking into RLS to begin with was that I was having progressively more problems with concentration and memory loss. My doctor had prescribed Klonopin for nightly leg discomfort, but never mentioned RLS. I started at .5 mg at night and this helped me sleep. But after a while I found I still was not sleeping well most of the night and assumed that my daytime drowsiness and depression were due to this. So the dose was increases to 1 mg which did allow me to get a good night's sleep.

When you suggested changing medications, I looked up the withdrawal symptoms for benzodiazepines. They pretty well matched most of the problems I was having while on the drug. Further investigation found at least one reference to someone who was taking Klonopin during the day to counteract withdrawal. I guess one gets addicted to Klonopin and by only taking it at night the levels drop enough during the day to cause withdrawal. I think this should be pointed out to anyone on this drug.

On the brighter side, while withdrawing from Klonopin and switching to Ambien, all of my senses were heightened. While in this state, sleeping was not easy but I could feel things I never noticed before. One of these was that my bowel was active when I was experiencing RLS (leg jerks, the whole ten yards). With this connection, I realized that RLS came on mostly about 10 hours after eating a meal or a snack. So I changed my lunch to 11 am and dinner to 8 pm and avoided snacks all day. Long ago (25 years) I had given up caffeine so there was none of that either. The results were astonishing, RLS occurred at 9 PM (before going to bed) and again at 6 AM (just before I got up) and I was not bothered during the night (except once when I ate a snack at around 1:30 PM and had RLS problems at 11:30 PM).

This got me to wondering: why food passing through me was a problem in the first place. I was diagnosed with "colitis" 25 years ago and changed my diet to avoid dairy products and most importantly caffeine (valium was prescribed but did little help). Sometime later, I thought I could take a little milk and started eating milk with cereal in the morning. At the time my work schedule was just right (9:30 to 6) so that I noticed no severe problems. When I switched work schedules 4 or 5 years ago, RLS problems showed up and I got on Klonopin. So I tried one more experiment: I took lactase enzyme with my morning milk. Again, results were good, RLS does not seem to bother me at times when food passes (in fact I do not seem to notice RLS at all). Time will tell if results are lasting, but for now it all makes a lot of sense to me.

I hope my experiences can help at least one other person, since my research has found several with symptoms like mine. I am sure RLS is caused by many other problems, but for me, the major cause appears to be gastrointestinal. I suspect that most patients (like me) would not report their gastro problems since they have gotten used to them and do not think they are related to RLS.

Again, my thanks to you and the great work you are doing,
Al

Medical Reply

Thanks for your observations. We do not know of any link between digestion and RLS, but many patients have noted a relationship between foods they eat and their symptoms.

Klonopin can cause significant daytime sleepiness and can also be very addicting.   That is why we reccomend to use other sedatives (Xanax or Ambien) for RLS.

Sent: Tuesday, August 10, 1999 12:16 PM
Subject: How to take a Drug Holiday from narcotics.

I have a question concerning drug holidays. I'm guessing a "true" drug holiday is two days off anything at all every two weeks. Is this correct? Would it be helpful to take Hydrocodone during the holiday when I normally take 5 to 7 1/2 mg. of Oxycodone at bedtime or are they too much the same type of medication? Would Tylenol #3 be a good holiday substitute?

I guess I'm too much of a chicken to go cold turkey (two birds in one sentence) for two nights since I know for a fact I would be awake for 48 hours.

Thanks for your help and reply,
Pat

Medical Reply

A true drug holiday is 2 days (longer for drugs with longer half lives) the drug and any other drug in its class every 2 weeks. Since all the narcotics act on the same receptors, substituting hydrocodone or Tylenol # 3 for another narcotic (oxycodone) would not be considered a drug holiday.

There is one possible choice, however. Ultram (tramadol) is a synthetic pain medication which may not act on the narcotic receptors. We are not yet sure of this, but in practice many of my patients have been able to alternate Ultram and a narcotic without having trouble with addiction or tolerance to either.

Sent: Tuesday, August 10, 1999 2:29 PM
Subject: new RLS sufferer

My doctor diagnosed me with RLS yesterday. The "twitching" in my legs has grown progressively worse over the past 4 months. It started out once or twice a week, then every other night, and now I haven't been able to sleep in over a week. My doctor suggested that I eat two to three bananas a day, drink three glasses of orange juice, and 8 - 10 ounces of quinine water about two hours before bed. Is this an unusual treatment for RLS?

Thank you,
Karen M., Gulfport, Fl

Medical Reply

The treatment suggested by your doctor is not on our web site for a very good reason, it does not work. Many doctors who are not familiar with RLS (or just see very mild cases, so treatment does not really matter) will make suggestions similar to your doctor's suggestions.

Make a copy of our RLS Treatment Page and give it to your doctor. Mirapex is a good drug to start with, and Ambien or Xanax can be added if necessary to help you sleep.

Sent: Tuesday, August 10, 1999 6:14 PM
Subject: RLS and Ultram

My doctor put me on Ultram for my restless legs. I take 100 mg.right before I go to bed. It seemed to have helped more in the beginning than it is now. Can I increase it until I find a dosage that will help me sleep? Should I ask my doctor for Mirapex? And could I take Ultram and Mirapex together; would there be a need to?

I also have a side effect from Ultram that is not going away which is sweating, I mean dripping wet-day and night. I think that might be what wakes me up continually at night. Shouldn't it be going away? It has been a couple of months now.

Thank you so much for your time,
Karen S., Duluth MN

Medical Reply

Do not increase your dose of Ultram. You are already on the highest dose that one can take at one time. The fact that it is not working as well as it should might indicate that you are getting tolerant of the drug. You should be taking regular drug holidays of at least 2 days of Ultram every 2 weeks.

Mirapex is an excellent choice for treating your RLS. You can take Mirapex and Ultram together, but with the right dose of Mirapex, you may not even need Ultram. Your frequent wakening at night might be from PLMD (which is present in over 85% of RLS sufferers) and is not affected by Ultram, but would be helped by Mirapex. There is no need for drug holidays from Mirapex.

Sent: Thursday, August 12, 1999 6:48 PM
Subject: Permax causing hot flashes and sweats?

I am a 52 year old woman taking Premarin .625 one tab a day. This doesn't seem to bother me but when I start taking Permax at three P.M. and another at bedtime, I immediately begin having hot flashes and hot sweats that go on all night. This is driving me crazy! Why does the Permax do this to me? It works really well for my RLS and I can't imagine doing without it. Is there an answer out there for me?

David F.

Medical Reply

You are likely having side effects from the Permax, which is not related to your Premarin medication. Change to Mirapex and you should have the same good effects on your RLS and no side effects. Mirapex 0.125 mg is equal to Permax .05 mg.

Sent: Friday, August 13, 1999 5:01 PM
Subject: Adding Ambien/Xanax or Ultram to Mirapex?

My problem is almost entirely PLMD and I have been taking Mirapex for the past year,   one .5 mg at 9 pm and generally 1/2 pill mid afternoon, in anticipation of probable jumpy leg as I relax then or during the early evening. The results are fairly good (I say "fairly good" because some foods or time of eating dinner seems to limit absorption). I also seem to have what may be RLS between 7-8 pm when I am watching television and have to pace the floor for a few minutes. I didn't used to experience this. And, because I am taking the night dose so early in the evening (it takes that long to take effect for me) I will experience the jumpy leg at 4-6 am unless I am really sleeping hard. Out of all his comes two questions:

1. Is it possible that Mirapex (and the other Parkinson's drugs) need drug holidays over long periods of usage? If so, for what number of days and what would be taken during those holidays?

2. More important, I have been wondering whether I would get more complete relief all around if I added something like Xanax or Ambien or Ultram to my present regimen. As I look over your Treatment Page, I am leery of Xanax because of it's addictiveness if I were to take it regularly. And the need for a pre-liver check. Ambien seems better but apparently can sometimes make RLS (PLMD?) worse. Ultram seems the best choice but might also be addictive if taken regularly. All of these are used for drug holidays, but are they suitable for daily use?

The basic question: what do you suggest I do?

Newt, in Oregon

Medical Reply

Tolerance to Mirapex can happen, but is very infrequent. If it does occur, we generally stop the drug, and replace it with Permax, which does not have cross tolerance with Mirapex. Drug holidays may work to prevent this tolerance, but we have no experience with this. I would suggest a week off the drug at first, then 2-3 days off the drug every 2 weeks.

Xanax or Ambien are good choices to add to Mirapex if falling asleep is a problem due to RLS. Ambien does not make RLS or PLMD worse and you do not need to monitor liver tests while on Xanax. It sounds as if you might need a little more Mirapex at bedtime, rather than adding a sedative at bedtime.

Ultram can help RLS if it is not controlled by Mirapex. Ultram can be used regularly for RLS, but it does not seem as potent for some compared to the narcotic medications. That is why we often recommend it for the drug holidays from the narcotic medications. For many, it actually works better than the narcotics (and they may actually use the narcotics as a drug holiday from Ultram).

Xanax, Ambien and Ultram all have significant addiction potentials, which can be avoided by taking regular drug holidays as suggested on our web site. We still recommend to add these medications only when the RLS is not controlled by drugs such as Mirapex.

Sent: Sunday, August 15, 1999 5:07 AM
Subject: PLMD keeping me up at night.

I live in Missouri, but was I ever glad to find your web site!! I find I'm awake 3/4 of the night and sleep better in the morning hours. My legs don't have the creepy-crawlies like some describe, but feel packed with heaviness at times. I never, ever have trouble when falling asleep in my recliner - ever!! It's always when I am sleeping prone in my bed that the problem occurs. I only sleep for one hour and a half - it's like clockwork - always wake up after l l/2 hrs. of sleep.

Melatonin does get me to sleep, but only for l l/2 hours, then I'm awake for about four more hours, before falling asleep around 4 or 5 P.M. I have cut out caffeine because I'd never sleep if I still had that! I hate the feeling of having to explain RLS to friends and neighbors because they just don't seem to really understand. I feel that I must appear to be lazy to them since I sleep so late in the morning hours, but that's probably only my feeling.

Sinemet didn't work for me at all, it makes my stomach queasy after one night. I did have a sleep study and that's how I found out I had RLS. They explained that the leg movements wake you up, but stops immediately upon waking, so you never know (without the sleep study) what it is that awakens you.

Thank you for the medical advice. I will take this to my doctor.

Julia C. W. in MO

Medical Reply

There are two ways to treat PLMD that keep waking you up at night. You can take a sleeping pill (Melatonin is good for some, but will generally not work through the night) to keep the PLMD from waking you up. The PLMD will generally still occur, but not cause arousals. We recommend Xanax or Ambien for this purpose.

The second approach is to use a drug such as Mirapex which will actually abolish the PLMD. A low dose of this drug will often do the trick, and drug holidays (which are necessary with the sleeping pills) are not needed. The chances of side effects should be less than with Sinemet.

Sent: Tuesday, August 17, 1999 11:06 AM
Subject: Pins and needles with RLS?

Thank you so much for this wonderful web site. I have learned so much in the past few months and am extremely grateful to everyone who has sent letters regarding problems with RLS. I have suffered with severe RLS for many years and have been off and on many drugs in the past with some success. However, I am now on Mirapex and find it works extremely well. I have not had so many great nights of sleep for years!!

I learned about this drug through the net and even my doctor didn't know about it. He put me on it at my request and I have been taking 1 and a half tablets spread out through the evening and into the night. It is 0.25 mg. strength and it seems to be working wonders! I also take 1/2 Rhovane (7.5 mg.) at bedtime when needed for sleep.

I would also like to mention that I really appreciate the letters and answers on this site and am wondering if I could get some help with one little problem. I have been experiencing a feeling of "pins and needles" in my legs from the calf down through the foot as well as a similar feeling (just recently) in my right forearm and hand. It is a very annoying feeling and when I spoke to my doctor about it he suggested seeing a neurologist. I will not be able to see the neurologist for several months, thus this feeling will be ongoing. I am wondering if I could get some help or suggestions from the wonderful advice I see on this Web site??? This feeling has been with me for about 4 months and seems to be increasing. Also, it actually started before the Mirapex.

Thank you for any information available, and again thanks for this web site- I will be looking forward to reading more with great anticipation.

Thank you,
Rosemarie H, Saskatoon, Saskatchewan, Canada

Medical Reply

The pins and needles feeling may have nothing to do with RLS. A small (but significant) percentage of RLS sufferers do experience this type of problem, but the reason for this is unknown. You should check with your neurologist to make sure that this problem is not being caused by a "pinched" nerve. If it is due to the RLS, then there is no other treatment that helps the problem other than your current RLS treatment.

Sent: Wednesday, August 18, 1999 6:44 AM
Subject: Changing Permax to Mirapex?

I want to change from Permax to mirapex if possible. I am currently taking 0.05 mg. plus another 1/2 pill and that isn't doing the job at all. I hear such good things about mirapex that I really want to try it. What is the best way to switch and at what doses should I begin the process?

Marge

Medical Reply

It is very easy to do. Just replace each Permax .05 mg tablet with one Mirapex .125 mg tablet. You should have no trouble with the transition.

Sent: Thursday, August 19, 1999 7:31 PM
Subject: RLS & cold intolerance/temperature instability

I have had a mild/moderate case of RLS/PLMS since at least 1988 - but not bad enough to ever consider calling for medical help. (Except that my husband had to move into the guest bedroom - DO MISS HIM!)

Anyhow, since '93 I've had increasingly severe problems with cold intolerance, interspersed with short periods of being way too warm (not hot flashes!). Have also developed terrible problems with the combination of high heat & humidity - very similar to heat stroke, & a burning, tingling sensation in my arms & legs when I'm chillier than usual.

Has anyone with RLS experienced these additional symptoms? I suspect there may be a connection because when the RLS bouts hit, my FIRST INSTINCT was always to cover up my legs with a blanket, though it seldom does any good.

Help appreciated!

Norma S.

Medical Reply

We have heard of numbness and tingling in the limbs to be associated with RLS, but not alternating bouts of cold and hear intolerance. We will see if any of our readers have had similar problems.

If your RLS/PLMD is severe enough to move your husband out of the bedroom, you might want to consider Mirapex for your condition. It may normalize your life and bring your husband back into the bedroom.

Sent: Friday, August 20, 1999 5:26 PM
Subject: Primary doctor will not treat my RLS

Last April I sent you an email explaining my RLS history and I asked a few questions about things that would help me discuss it with my doctor. I have talked with him many times already about my RLS. I have attached your reply at the bottom of this letter.

I talked to my doctor about what you had told me. He said that he didn't think that the lightheaded feeling was from the Ambien but he would go ahead and prescribe Xanax for me. I asked him about Mirapex, Requip &Permax and he got out his medical book, looked them up and told me that he would not give me one of these medications. He couldn't even find one of them (I think it was Mirapex) in his book. He wouldn't tell me why. He just said he didn't feel right in giving them to me. I asked him if he had read all the literature that I had give him (several months earlier) about RLS and he said "Oh, I skimmed through it" like it really didn't matter to him (I don't really think he ever read it). I tried to let him know how much pain I was in and how it made my life miserable but he just didn't want to listen. I went home with a Xanax prescription. I left the doctor's office very frustrated.

Well, I stopped the Ambien and started taking the Xanax and the lightheaded feeling went away. I have been taking 1mg of Xanax each night (it has been about 3 months now). It takes a couple of hours (or more) to work but I eventually get to sleep. I don't usually get to sleep until at least 1 or 2 in the morning. The Xanax really doesn't seem to be solving my problem. I sleep only a few hours a night, my legs are hurting more and more before I fall asleep and I often wake up in the morning with a lot of pain.

I am at the end of my rope. I have been fighting to find someone to help me for over 20 years now. I've had RLS for over 30 years. You and the support group have really helped me but I need someone up here in Palmdale (with Blue Shield) to help me too. I am trying to find another doctor but who knows if he will care any more than my present doctor or the others. Next week I am going out of town and just the thought of having to sleep at someone else's house or at a hotel makes me want to stay home (which I don't really want to do) but I know I will be miserable.

Sorry to dump all this on you but I know that you understand what I am feeling and maybe you can help in some small way.

Thanks for your patience,
Patrice W.

Medical Reply

You are right that Xanax just helps you sleep, but does not address the RLS otherwise. Mirapex is the correct choice for your problem. Your primary care doctor can prescribe this for you, but many do feel uneasy about prescribing medications with which they do not have enough experience.

This is not unreasonable, but he then should refer you to a specialist (sleep specialist or neurologist) who does have experience with these drugs and who will then not hesitate to prescribe them for you. Even if you are in an HMO, you have the right to see a doctor who has the expertise to handle your condition.

Remember to take regular drug holidays (2 days off every 2 weeks) from the Xanax.

Sent: Saturday, August 21, 1999 10:25 PM
Subject: Any pointers for a difficult RLS case?

I am a 29 year old male who has had RLS for as long as I can remember. I have just moved to Baton Rouge and am trying to find a doctor who has a clue about RLS. As with many of others I have found it necessary to do my own research into this disorder and would appreciate any pointers you could give me. When I first sought a medical attention for this problem I was diagnosed with a circadian rhythm disorder and accepted it.

I was first treated with 175 mg amitriptyline (Elavil, a large dose I think). This increased my sleep from 0-2 hours sleep a night to 4-5. This medication worked for about 3 years but gradually decreased in effectiveness. I began doing research at a local library and found out about RLS; as soon as I read the description I knew I had found what I was looking for. I spoke to my doctor about this and he diagnosed it as RLS. We began treatment with Klonopin 1-2 mg. and for the first time in my life I began to sleep like a normal person. This worked for 2 years at which time I began to develop a tolerance.

We then tried Sinemet to which I reacted horribly. When I discussed this with my doctor, a family practitioner, he decided that I should see a neurologist, so I did. My neurologist tried Permax and Mirapex with decreasingly nasty, but, still unacceptable side effects. We then tried Topamax which seemed to have little effect other than to add confusion to my exhaustion. I next tried Codeine 60 mg with some success, but still leaving me at not quite my best.

My problem is this I have been a runner and a cyclist for quite a while and am currently in ROTC and I absolutely cannot allow a drug to decrease my physical and mental performance as much as much as the Sinemet and its siblings have and cannot afford sacrifice my mental alertness to the codeine. My family practitioner highly recommended that I rethink my commitment to ROTC and accept this as a life long problem that is likely only to get worse. I would sincerely appreciate any advice you could give me. ( I apologies for the typing and spelling. I have been awake for two days.)

Thank You,
Joel R.

Medical Reply

Your RLS problems do sound more difficult than the average, in part due to your treatment. Klonopin is not the best benzodiazepine to use for RLS (despite it being referenced as such in most of the textbooks). It has a long half-life which results in daytime sleepiness, and tolerance develops in most patients. Xanax or Ambien work much better, but regular drug holidays (at least 2 days off every 2 weeks) need to be taken to assure that tolerance does not develop.

I do not know what dose of Mirapex you started with, but when started at low dose (even as little as half of a .125 mg tablet) then increased slowly (at weekly intervals), most people will be able to tolerate it. Requip is another choice, but again this needs to be started with a very low dose (1/2 of a .25 mg tablet).

Topamax is a new antiepileptic drug, but I have not yet seen reports on its use in RLS. Neurontin is an antiepileptic that is known to help RLS and may be a better choice for you. Again, start with very low doses and increase slowly.

Codeine, Vicodin and Perdocan can be used on an intermittent basis. If needed regularly, Ultram (tramadol, a synthetic non-narcotic pain killer) can be used to alternate with the narcotic.

There should be no reason that with proper treatment for your RLS that you should not keep active and continue with your ROTC commitment.

Sent: Sunday, August 22, 1999 7:59 PM
Subject: My experience with RLS and herbal remedy "Joint Relief".

For the past several month's I have been reading the posting's on this web page and decided it was time to share my experience with RLS. I apologize if this posting is to lengthy, but I wanted to give a little background regarding my RLS.

I'm a 38 year old male who has had problems with RLS as far back as my teenage years. My mom would refer to it as "jumpy legs". Back then the simple solution was to stand up and move my legs, and it would go away.

About a year and half ago I noticed the RLS had worsened to the point that I would lay awake in bed at night unable to sleep because I had to constantly move my legs.

I made an appointment with my doctor and he referred me to a sleep center in Salt Lake City, were they determined that I had sleep apnea, but tests also showed I had a lot of leg kicks in the middle of the night. The doctors at the sleep center were not concerned about the leg kicks, but after treating the sleep apnea and still not feeling like I was sleeping well, I spoke to my sleep center doctor and he prescribed Sinemet to treat my RLS. I did have allot of success with the Sinemet, but I found I was unable to skip even one night before my "jumpy legs" would come back.

About a year and a half ago my wife was introduced to an herbal company to try and help my oldest son who has ADHD. After talking with an herbalist that works for the company he suggested I try a product called "Joint Relief". I have to say that for me these herbs work.

It took a couple of weeks for my body to assimilate these herbs, but now that I have been taking these for the past couple of months, I no longer get the "jumpy legs" sensations. I no longer worry before going to bed that I'm going to have "jumpy legs". I even went off the herbs for a couple of weeks to see if the "jumpy legs" would come back, and sure enough they did. All this while being off the Sinemet.

I don't know how my RLS compares with others, I know for some the Sinemet didn't work, but for me it did. I'm not saying these herbs are a cure all, but for those of us who have suffered with RLS and found little or no relief I don't believe it can hurt.

If anyone is interested in this product please feel free to email me at dalbin@email.msn.com.

David A.

Medical Reply

We get many letters from RLS sufferers who find a particular herb or homeopathic remedy that dramatically helps their RLS. Unfortunately, these treatments generally only help a very small minority of RLS patients. We try to put these treatments on our web site so that the information may help even that small minority.

Sinemet does work for many RLS sufferers, but if the dose exceeds 2-3 of the 25/100 tablets per day, there is a very significant chance of getting rebound and augmentation (see our RLS Treatment Page for more details). If your RLS does return, consider Mirapex instead.

Medical Reply

To give you a little info. about the company and the product I have been using.

The name of the company is Enrich International, they are based in Orem, UT. They primarily sell herbal products and nutritional supplements.

The product I have been using "Joint Relief" is a combination pack of three different Enrich products. I copied the info. regarding this pack from their web site.

• Glucosamine AJF™ -IMPROVED- is specially formulated with chondroitin sulfate, glucosamine, devil’s claw, and shark cartilage—four great joint nutrients that fortify the body’s production of collagen and synovial fluid.

• Arth™ contains a proprietary blend of yucca, white willow, hydrangea, alfalfa, burdock, black cohosh, sarsaparilla, parsley, slippery elm, cayenne, redmond clay, and lobelia. Yucca contains natural soothing properties, hydrangea and burdock help cleanse the joint areas, and alfalfa is high in nutri-ents that help nourish the skeletal system.

• MSM Complex supplies 250 mg of MSM per capsule; MSM is an important sulfur element that the body uses in the formation of proteins. Fortified with seven forms of vitamin C, immune-enhancing herbs, and potassium, MSM Complex™ nourishes the joints and helps the body combat fatigue.

Ingredients:

Glucosamine AJF™ -IMPROVED-:
Serving Size: 2 Capsules
Amount Per Serving % Daily Value
Glucosamine Hydrochloride 600 mg ‡
Chondroitin Sulfate 300 mg ‡
Proprietary Blend ‡
Devil's Claw (Harpagophytum procumbens DC.) (whole plant)
Shark Cartilage Extract
‡ Daily Value not established.

Note: Individuals with sugar sensitivities should consult a health care practitioner before taking this product.

Arth™:

Serving Size: 2 Capsules
Amount Per Serving % Daily Value

Propreitary Blend 740 mg ‡
Yucca (Yucca schidigera Roelz.) (root)
White Willow (Salix alba L.) (Bark)
Hydrangea (Hydrangea arborescens L.) (root)
Alfalfa (Medicago sativa L.) (whole plant)
Burdock (Arctium lappa L.) (root)
Black Cohosh (Cimicifuga racemosa (L.) Nutt.) (root)
Sarsaparilla (Smilax aristolochiifolia Mill.) (root)
Parsley (Petroselinum crispum (Mill.) AW Hill) (Leaf)
Slippery Elm (Ulmus rubra Muhl.) (root)
Cayenne (Capsicum frutescens L.) (fruit)
Redmond Clay
Lobelia (Lobelia inflata L.) (whole plant)

‡ Daily Value not established.

MSM Complex:

Serving Size: 2 Capsules
Servings Per Container: 60
Amount Per Serving % Daily Value

Vitamin C 55 mg 76%
Potassium 99.5 mg ‡
‡ Daily Value not established.

Other Ingredients: MSM, Barley Flour, Potassium Citrate, Ascorbic Acid, Echinacea purpurea root, Chinese Ginseng, Siberian Ginseng, Odorless Garlic, and Syncron-7™ Blend.

Recommended Use:

Glucosamine AJF™ -IMPROVED-Take 2 capsules with a large glass of water daily.

Arth™ - Take 2 capsules with a large glass of water three times daily.

MSM Complex - Take 2 capsules in the morning and 2 capsules in the afternoon or evening. Maximum of 4 capsules per day.

If people are interested in this product they can email me and I can pass along info on acquiring this product

DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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

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