Patient letters on RLS symptoms and remedies- Page 35

Kicking RLS/PLMD Patient

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

Sent: Sunday, May 20, 2001 9:02 PM
Subject: Reply to Candice

I have had RLS all my life, I believe. I'm 64 and it's under control with medications, primarily Klonopin. I have a severe case. We have a chat room at the RLS foundation's web site, We're on there every night at 8 p.m. central time. You can talk to others who have this miserable condition. It's a very lively, friendly group. Everyone is willing to share their experience, history and what meds they use to control it.

Diane

Sent: Monday, May 21, 2001 12:31 AM
Subject: Marijuana for RLS

I have had this problem for about 10 years now. After reading your web site I am surprised to know other people share this problem also. I thought only I was crazy!!!! I was in a terrible boat crashing 1999 and almost died. after about 1 year of recovery it seems it has gotten worse. I tried many pain type medications but nothing really works. One day I smoked some marijuana and to my surprise it has helped considerably. Is there a prescription out there that is legal to take with any of the ingredients that the pot has.

Thank you very much,
Emmett

Medical Reply

Both marijuana and its active ingredient are illegal almost everywhere. Some states have legalized its use for medical purposes but the US government has gone over their heads and will prosecute anyone involved in the growing, selling, distribution or using marijuana. Marijuana is even extremely difficult to get for scientists/doctors trying to study its effects.

You should try Mirapex which works as well as marijuana and is legal.

Sent: Monday, May 21, 2001 3:51 AM
Subject: Topamax for RLS?

I would like to know if Topamax has been tried for RLS?

Thanks,
Karen U.

Medical Reply

Topamax (topiramate) is a drug used for epilepsy. It has some similar properties to Neurontin (another anti-epileptic drug used for treating RLS) in that they both work on the GABA system.

As yet there is no information (that I know of) using Topamax for RLS.

Sent: Monday, May 21, 2001 10:53 AM
Subject: Cramping from Mirapex?

I was diagnosed with RLS in 1994 and started out on Sinemet. It rebounded and I went to Permax which worked really well until I was in pain all over all the time. I then went to Mirapex and have been on it about 2 years.

I have recently begun having spasms in my feet and calves. They tighten up so badly that my right ankle now hurts all the time. I wake up in the morning with my achilles tendon pulled back hard. It is very difficult to start walking as I must stretch out my feet muscles to get going. Is this a symptom of Mirapex? Maybe I need to start looking for something else?

Please let me know what you think.

Medical Reply

I do not think that the tendon/muscle cramping is due to Mirapex, but anything is possible. The only way to tell is to stop the Mirapex for few days and see if the cramps go away. If they do go away, then consider a trial of Requip instead of Mirapex.

Sent: Wednesday, May 23, 2001 12:56 PM
Subject: Opiates to de-sensitize

Well, I must admit that this has become my new favorite website in the last week. My story is not dissimilar to all the other letters. Had this RLS as early as I can remember and it has increased in frequency and intensity with age. Now at age 36 I have it every single night in my arms, legs, hands, and trunk. I read one other letter in which the writer refers to his one-hour of torture before falling asleep at night. I would be so happy with only one hour. Mine goes on generally for about 3 hours and sometimes all night long and I just skip sleep at all that day.

I only found a name for this last week when my father was diagnosed with RLS and it led me to start some investigation on my own. I already had an appointment scheduled with a sleep specialist and wanted to have has much knowledge in my corner as possible when I went for my visit.

Not knowing all these years what I had did not mean I was not able to treat it. Like everyone else, I had my rituals of activities I would try to get the sensations to go away, and like another writer, I too have beaten my limbs black and blue in the madness of the night.

Three years ago I developed a case of the shingles (internal) and was given anti-viruals and Vicodin for the pain. I was on the Vicodin for 2 or 3 weeks. Those 3 weeks I slept with no problems whatsoever with my RLS. Needless to say, since that time I have self-medicated with opiates. Whenever I have a dentist appointment or some other form of pain and am given them, I horde them for night-time. A prescription of 30 Vicodin or Lortab, if I do not take them for the pain they were given, means an entire month of sleeping. Weighing the pain against the sleep, I always take the sleep. It's amazing how this RLS will make you prioritize what's important. For a root canal or dental surgery, I will suffer and take only Advil so that my opiates can be saved to quell the RLS symptoms at night.

I was on opiates for 3 years for sleep. I did not use them recreationally because again, that would mean one less night's sleep. Because I did not know what I had, I began to become paranoid that the opiates were bad for me. At Christmas time of 2000 I quit them cold turkey. I was determined to re-teach my body how to sleep on its own. The RLS of course came back in full force and I thought I would go mad for the first 5 days as I did not sleep a single bit during that time period.

Now I have been seeking my doctor's advise. He gave me first prescription sleeping pills. They did not work. He put me on an anti-anxiety medication called BUSPAR. That intensified the RLS. He tried prescription strength muscle relaxers to no avail. Finally he referred me to a sleep specialist.

My appointment with the specialist was 2 days ago. By this time I had found this website and discovered that one of the treatments was what I was already doing on my own. Opiates. I wrote out an entire history of my RLS for this doctor and included every single medication I have taken and for how long and what it's effectiveness was. I also brought the sleep calendar I have been keeping since the beginning of the year. This shows that I only sleep about 3 to 4 hours every 3rd or 4th night.

This doctor put me on the list for a sleep study and wrote me a prescription for Permax because I would not be able to get into the sleep clinic for 2 to 3 months and my symptoms were so severe. I took the Permax that night as instructed and I was sick all night long. I had a headache the likes of which I've never had in my entire life. I was sick to my stomach, dizzy, and had blurred vision. I was an hour late to work in the morning because I could not drive as I felt like I was hung over.

As it happens, that same day the sleep clinic had called and asked if I could come that night as they had a cancellation (this was last night). I made the arrangements and had the study done. During the night, because I could not sleep, they gave me Ambien. This was at 1:00 am. I finally fell asleep at 2:00 am but by 2:30 am was awake with the RLS and the technician had to come in several times during the night to untangle me from all of the electrodes I was hooked up to. I was like a fly caught in a spider web. I wrestled with the RLS and all the wires for about another 3 hours until I finally fell asleep around 5 or 5:30 am.

My main question is this, and I apologize for the long windedness of my story: Are none of the other medications working for me because I was on opiates for so long? Did that destroy the effectiveness of sedatives, the Permax, or any of the other meds they have prescribed for me? The Permax made me sick, so I don't know that that's in the same classification, but I have read quite a bit about Ambien being effective for people, and yet I was still up all night with it.

Am I hurting myself by using the opiates to sleep? I explained to the doctor how effective they were and that I had no side-effects, but he brushed it aside only making sure during the conversation that I was not still taking them. I guess I sort of felt like he thought I was an addict because I had mentioned myself their effectiveness for me. The truth is I am a sleep addict and the opiates got me to sleep. I was able to quit cold turkey with no side effects other than the return of my RLS in almost an angered deliberation. A couple of night sweats and that was all.

Any advice would be greatly appreciated,
David

Medical Reply

You are quite correct in most of your observations about RLS and medications (which only makes sense as you have lived through all these problems). You are right that you are not addicted to narcotics, but simply need them for sleep. Taking narcotics does not alter your RLS in any way or effect the use of any other drugs for RLS. There would be nothing wrong in taking them every day as you have been doing, but there are better ways to treat RLS which do not include narcotics.

There was no reason for you to get a sleep study as RLS is a clinical diagnosis based on the patient's symptoms and the sleep study (if it is possible to even get some sleep) adds nothing. If one is looking for PLMD causing arousals, then the sleep study may be of some use.

Permax is not a bad choice, but it is not as good a drug as the newer Parkinson's disease medications, Mirapex and Requip. Permax can cause nausea (made much better if taken with food), especially if taken in high doses initially (you did not say what dose you were put on, but .05 mg is the usual starting dose). Get your doctor to put you on Mirapex or Requip (and have them follow the directions on our RLS Treatment Page) and your RLS problems should resolve without the need for narcotics.

Ambien is a very good sleeping pill, but it has little chance of being effective if the RLS is severe.

A Reply from David

Sent: Wednesday, May 23, 2001 11:42 PM
Subject: RE: Opiates to de-sensitize

Thanks for your quick reply. The dosage of the Permax was 0.05 mg. After I got home from the sleep clinic today I called the sleep specialist to tell him about what happened on the Permax and he changed me to Klonopin. I have not taken it yet as I'm instructed to wait until bed time. That is where I'm at right now :)

Thanks,
David

Medical Reply

Although many sleep specialists like to prescribe Klonopin for RLS, it is a drug that I rarely (if ever) use for RLS. If may work a little better than Ambien but causes daytime sleepiness in a very high percentage of users and is quite addictive if used on a daily basis.

Mirapex or Requip are the drugs of choice in your case. Let me know how you do on one of these drugs.

Sent: Wednesday, May 23, 2001 3:44 PM
Subject:RLS?

My aunt just found out that she has nervous leg syndrome. I was wondering if that is the same thing as RLS? From what I have read they seem to be identical...

Thanks for any information,
Venessa T.

Medical Reply

There is no such medical condition as nervous leg syndrome. It is likely someone's (mistaken) name for RLS.

Sent: Thursday, May 24, 2001 8:19 PM
Subject: Mirapex & insomnia?

Could you please tell me if Mirapex causes insomnia, my RLS is doing pretty good but now I am up at night not because of RLS but I just can't sleep? I take 0.125mg 2 at bedtime, around 10:00pm. Please help me if you can.

Thank you,
Joan

Medical Reply

Mirapex has been associated with both insomnia and increased sleepiness. It just shows you how different the same drug can act in different people. Often the insomnia problem may be conditioned from the longstanding RLS and may thus persist even when the RLS is treated.

If that is not the case, then changing to Requip may be helpful or adding a sleeping pill, such as Ambien is another choice.

Sent: Sunday, May 27, 2001 11:27 PM
Subject: RLS

I am sitting here at 0200, just happened to type in RLS and am lucky to meet all of you. I am typical, a 52 female RN, child of alcoholics, Irish catholic and have made appointments to see doctors but always canceled because I do not think anyone will care or if they do care will know what to do. The drugs scare me and doesn't sound like they offer lasting solution. I work hard all day on my feet..makes it worse. Running definitely makes it worse, even if I run at 0600, it keeps me up all night. I eat no sugar or flour, no caffeine.

Acupuncture works for a couple of days. Magnesium and calcium with Vitamin D and lithium, only the very low dose element, do not work as they used to. I am very scared about dealing with this the rest of my life. I have had it since childhood..worsening with age..worse with menopause. seems worse in my left leg and worse in warm weather, amazing how many of us sound the same. Mine is not a twitching but an irresistible urge to move my legs.

The rest of my body is exhausted but my legs will not quit. I bang them against the mattress, wake up every hour, if I have slept at all and pace and whine and feel sooo sorry for myself. However, I feel OK after I have started working so maybe I am getting enough sleep. I took Tai Chi. They taught me to jump up and down in place 20 or 30 times to send the bad energy back to the earth. Does it work? Who knows?

I sometimes am walking around the block at a slow pace at 0200 but tonight it is raining so I am glad I sat at the computer and found this support. I live in MD and I will try that doctor at Hopkins that one young lady suggested. I pray, I cry, I leave my husband and sleep in the guest room. It is getting worse all the time. I have started using a lot of artificial sweeteners and I will stop at once on one person's recommendation. The pesticide theory was interesting but wouldn't it be even more common if that were true?

Kathleen C.,
Leg banger

Medical Reply

You are the right track in thinking about making an appointment with a doctor who knows about RLS. Do not be afraid of medication as most of them are quite safe and very effective if used correctly.

A Reply from Kathleen C.

Sent: Monday, May 28, 2001 1:39 PM
Subject: Re: RLS

Thanks for your reply. As for medications, almost every letter I read stated that the meds only worked for a short time. I am 18 years sober from drugs and alcohol and hesitate to start on anything that could alter my thinking..maybe I am just not that desperate yet. I also have a history of eating disorder..binge and purge. When I gave up sugar and flour to control cravings the RLS escalated. I suspect that the alcoholic gene makes me prone to food cravings also and it is all my body's way of trying to calm down the restlessness that I have always suffered with ...whatever.

Thanks,
Kathy C

Medical Reply

Most of the letters that you read on the our site about problems with the medications are written by the small percentage of patients who have had trouble with the medications. Most RLS sufferers do great with the new pills but we only publish a few of the letters that praise the medication. The Parkinson's disease medications should be no problem in someone who has had problems with alcohol in the past.

Sent: Tuesday, May 29, 2001 4:55 AM
Subject: Mirapex and low blood pressure

I have recently begun treatment of my RLS with Mirapex. My doctor has prescribed .125 mg/day about 1-2 hours before I go to bed. After 7 days, I am supposed to increase my dosage to .25 mg/day if I am still experiencing RLS at night. Indeed the RLS is still a problem after 5 days, so it appears I am scheduled to escalate the dosage in the next two days.

My question is this. I am on a low dose of Prinivil (5 mg/day) to control mild high blood pressure. With medication, my blood pressure normally runs around 125/85. After 4 days on Mirapex, I was in a store kneeling down to examine something. When I stood up, I became dizzy and almost felt like I was going to faint. Within a few seconds I was fine again. When I got home, I took my blood pressure and found it to be 100/63. I took it again several times that day and the next day with similar results.

This is very, very low for me. I've never had numbers that low before. I read the description of Mirapex side effects and noticed that hypotension is a documented condition, especially when escalating the dosage. So here is my question. I'm heading out on a 10 day fishing trip to Northwest Ontario with 3 of my friends this Friday. Do I increase my dose to 0.25 mg/day before I leave and hope the blood pressure issue is not a problem? Or, do I remain on .125 mg/day until I get back?

Any help/guidance you can offer me would be greatly appreciated.,
Tom

Medical Reply

The low blood pressure (hypotension) does occur with Mirapex, but usually at significantly higher doses than you are taking (the Parkinson's disease doses are much higher). You clearly are very sensitive to the hypotensive effects of Mirapex and should thus be careful when using Mirapex.

It is likely best to stay at your current dose until the low blood pressure problem is better (this could be another week or two). Most patients adjust to the side effects after a week or so, then the dose can be increased slowly. With each dose escalation there may be a period of adjustment similar to what you have already experienced.

If this is a problem, then a change to Requip may or may not be helpful.

Sent: Monday, May 28, 2001 7:12 PM
Subject: not sure if I have RLS

I have just been told by a doctor that I probably have RLS. The doctor is a Physical Medicine doctor He has put me on Neurontin and suggested I try meditation also, as he says it is caused by stress. A bone scan was done and was negative.

I can't remember when my legs started bothering me. I was diagnosed with breast cancer almost 2 years ago, and had a mastectomy and immediate tram flap reconstruction. I did not need to have chemotherapy or radiation as it was not aggressive and was caught early. I am taking Tamoxifen, and will be for another 3 years. I had several bouts of illness due to my surgeries and so I am not finished with the reconstruction surgery yet. I also had to have a hysterectomy because of the side effects of Tamoxifen on my endometrial lining, so I have next to none estrogen.

I know that the pain in my legs started after my breast cancer. I have an aching feeling, like my bones hurt. It usually starts during the night and can get better during the day. I do not recall ever moving my legs a lot at night, but I know when they hurt during the day I bend and shake them a lot, like I am trying to loosen them! I also run, and running helps, in that by the end of the run my legs feel loosened up. I have iron deficiency anemia and have been taking Feosol for over 2 years. I also take calcium, 1800 mg each day to help counteract osteoporosis, and I take magnesium. I take various vitamins and anti-oxidants to build up my immune system.

I am on 100 mg of Zoloft daily because of a depression, and post traumatic syndrome, that hit me one year after my breast cancer. That was so unlike me and caught me completely off guard! Zoloft has helped me a lot and I think I am doing much better all around. Sometimes I get very sick of the way this has affected me, I have hot flashes, night sweats and my legs hurt at night too. My memory has been affected as has my libido by the lack of estrogen.

The doctor I saw thinks that since I am not finished with my surgery and treatment for breast cancer, I have still some stress due to that and all I have been through. I admit I am still afraid the cancer will return, even though I have been told I have a good chance for a cure. One good thing is that I have lost a lot of weight, so I look better. I am so grateful for all the love and kindness I have been shown through all this. Everyone has been wonderful to me.

Sorry this is so long, but I feel like there are so many factors that could be affecting my leg problem. I do not want to be doped up and I do not want to stop running. The new doctor said I should keep running. Does this sound like RLS to you?

Thanks for any help and advice you can give,
Dorothy H.

Medical Reply

Your symptoms do sound somewhat like RLS but part of what you need to diagnose RLS is an irresistible urge to move the affected limb (when the discomfort is present) and the movement should help relieve some or all of the discomfort. It that is not the case, then RLS is less likely.

Mild to moderate exercise can help RLS, but heavy exercise can often worsen RLS symptoms.

Sent: Tuesday, May 29, 2001 3:05 AM
Subject: RLS

I have been trying to deal with this subject for 2-3 years now. My family physician has prescribed everything from benezodiazapines, levodopa etc. and finally propoxyphene (Darvon). He started off with one 65 mg at bedtime and have had to go to two, which are not all that effective. I get at best around 4-5 hours of interrupted sleep. I believe my doctor has about given up and

I went to a sleep center at where a doctor prescribed Mirapex to be taken along with the Darvon at increasing dosage. This did not prove to be of any benefit and so I am still doing the Darvon with diminishing relief. One of the side effects of the Darvon which my drug manual indicates as serious is paling stools and the good possibility of addiction. Both of the doctors do not seem to be regarding this as serious.

I have a friend who thinks I should see a doctor who specializes in nutrition in the Virginia Beach, Va. area who has successfully helped her . Your website is most interesting and presents a lot of good information .I am a 75 year old male and otherwise in good health but I don't think I will continue to be so if I am unable to find a qualified health care provider who will take the time to help who is interested. Feel free to share my experience with others and comment in any way relative to my situation.

Harold R. C.

Medical Reply

Darvon (propoxyphene) is the least potent of the narcotics, but when taken in high enough doses (which varies per each individual) can certainly cause addiction and tolerance. It does sound as if you are on you way to trouble with the drug.

There are other solutions for your RLS which have not been tried which may help eliminate or decrease your dependence on Darvon. You should see a sleep specialist or neurologist in your area who has more expertise in treating RLS.

Check with your local RLS support group to see if you can find a good RLS doctor.

Sent: Wednesday, May 30, 2001 1:50 PM
Subject: RLS worse with age?

Does this condition usually get worse as one ages? I've had it for 35 years and kept it easily under control with Ativan until 2 years ago. Suddenly, nothing worked and I keep getting up more often and more often during the night. Doctors at Kaiser have taken me through many of the drugs on your lists. Side effects are too much to live with or I still have to get up every 1 1/2 to 2 hours.

I've also developed Sjogren's disease in the last 4 years. That hinders several of the drugs I could otherwise probably use. I'm 64. It is daunting to think I will never have a good night's sleep again.

Sincerely,
Marcia K.

Medical Reply

Unfortunately, RLS does tend to worsen with age. Have you tried Mirapex or Requip yet?

Sent: Friday, June 01, 2001 11:12 AM
Subject: Treatment for my RLS

I have had RLS for about 20 years. For most of those years it was only during periods where I was increasing or decreasing the amount of exercise I got. However, two years ago the RLS came on nonstop. I now go through periods when it is really bad (mostly summer and when I have less on my mind) and periods when I have no symptoms. During the periods I have it, my life is virtually destroyed.

I have tried Neurontin and Sinemet. However, the side effects from the drugs are horrible, worse than the RLS. I am extremely fatigued and drowsy. This happens with all drugs I take with similar side effects. I surmise this to be a symptom of extremely low blood pressure (naturally occurring). One night I took about 1/16th tablet of Sinemet and my systolic pressure fell to 79. Even with the 1/16th of the tablet, the symptoms lessened, but not enough to allow me to sleep.

Are there any RLS drugs that do NOT result in drowsiness and fatigue? Any suggestions are appreciated.

Thanks.
Lucy C.

Medical Reply

Consider Mirapex or Requip. Most patients do very well if they are taken correctly and started out in low dose. Please see our RLS Treatment Page for details on how these should be used as your doctor will likely not know.

Sent: Saturday, June 02, 2001 12:15 PM
Subject: Sleepiness with Requip?

A sleep test has shown that I am suffering from RLS/PLMD. Requip, which I am using for the past few months, is very effective for at least the night. Another sleep test has shown that I also have a sleep-disturbance (not due to PLMD). I wake up a couple of times during the night, but with Requip I usually can go back to sleep again.

My problem now is that I cannot use Requip during the day. One of the 0.25 Requip is not effective, while 2 make me too sleepy for day-time. I also had to reduce the night-time dose of three of the 0.25 Requip to 2 because of feeling too sleepy the next morning until mid-day which means that sometimes I also have RLS problems in the early morning.

What do you recommend? My sincerest thanks,
Lenie V.

Medical Reply

Mirapex, which is quite similar to Requip, may or may not have less daytime sleepiness than Requip and be as effective. The only way to tell is to try it. Permax may be another choice.

Another choice would be to keep the nighttime dose down to 2 of the Requip tablets and add Ambien on an intermittent basis.

Sent: Sunday, June 03, 2001 12:56 AM
Subject: Quinine for "spaghetti legs"

I enjoyed the letters about RLS on your letter page. I have taken quinine, two of the 5 grain tablets. at bedtime which prevents spasms of my legs with nocturnal cramps where I have to try to stand as I cry with pain several times in a night's sleep. I worry about getting cirrhoses of the liver, but my primary care doctor checks my blood frequently and assures me he is watching for this factor in my blood tests. Lately my legs have felt like icicles when I awaken in the morning, feet are extremely cold. What I describe as "spaghetti legs" feels like limp spaghetti moving around in my legs.

Do any of these symptoms pertain to RLS as I have to move my legs around in trying to get to sleep or even put a pillow under them? I have tried to quit quinine, but the spasms come back, in the night. or even take only one alternately with two quinine tablets each evening. It sounds like to me Requip might be a better alternative to quinine.

I would appreciate your opinion.
Thank you so much.

Medical Reply

It sounds as if you have leg muscle cramps, not RLS. The leg muscle cramps are relieved by quinine, but RLS is generally not helped by this drug.

RLS usually occurs in the evening/bedtime and occurs in the morning only in severe cases. The movement that occurs in RLS is associated with the unpleasant sensations in the legs, is irresistible, and relieves the RLS symptoms temporarily (somewhat). It does not sound as if you have these complaints, so I doubt that you have RLS and that Requip would be of any benefit.

Sent: Sunday, June 03, 2001 3:37 AM
Subject: Confused

I am a 38 year old male that has been suffering from nocturnal myoclonus (PLMD) for more than a decade. It occurs almost nightly to a greater or lesser extent. As strange as this may sound, it seems to be aggravated by antihistamines. I discovered this years ago when trying over-the-counter sleeping aids and cold remedies.

For most of these years I have taken Sinemet, and it works for the most part. However, as I get older it seems that I need to gradually increase the dosage. But this came with side-effects, such as increased aggression and strange burning sensations. I was given other drugs to try such as Mirapex, but that gave me headaches and caused weight loss of over a pound a day. For a couple years I was given Klonopin, and I was able to cut the dosage of Sinemet in half. Until last fall.

Last fall something happened. There was a miscommunication somewhere and I wasn't able to get my prescription for Klonopin refilled in time. Let me tell you, withdrawal from 2 years of 1 mg Klonopin is NOT fun! But after the third day, everything changed. I felt 'normal' for I think the first time in over ten years. Not 'good' or 'great', but rather I felt like I know I'm supposed to feel but forgot. My pulse (which is usually around 90) dropped to 70, the aches in my muscles and joints went away, my sex drive came back after a long absence, and my LEGS STOPPED JERKING! This lasted for about one week, and then I went back to status quo.

I have tried to discuss this experience with three different doctors, but none of them seemed willing to provide any explanation for my reaction to Klonopin withdrawal. Is there anyone that can provide a clue as to what happened?

Thanks,
Frank

Medical Reply

Some of the improvement you had off Klonopin is easy to explain. The decreased sex drive and energy is a common problem with long term Klonopin usage and should get better off the drug. The other improvements that you had for a week will likely defy any medical explanation. Antihistamines bother RLS and PLMD.

You may want to consider other Parkinson's disease drugs such as Requip, Permax or Parlodel to see if they do not have the same side effects.

Sent: Monday, June 04, 2001 8:29 AM
Subject: Antidepressants and RLS

Thanks a bunch for this fabulous web site!

I am printing out some of your pages to show my doctor who has no idea what I am talking about when I tell her about my "jumpy legs." I have had this problem for many years but could never figure out what caused it. I tried different things, more exercise, less exercise, healthy eating, Excedrin PM, Tylenol PM, etc. but it doesn't seem to matter. I was depressed as a teenager but did not actually get diagnosed and start taking medication (Serzone) until about six or seven years ago. I am now 41.

Your site says that taking anti-depressants can make the RLS worse. That is not encouraging.

Anyway, thanks for the web site! Now I have something to show my doctor. I was beginning to think it was "all in my head."

Stephanie L.

Medical Reply

Most doctors do not know much about RLS, so bringing in information is often helpful to get your treatment going in an effective manner. Antidepressants may cause worsening of RLS, but once on good RLS medication, the concern is much less. Some patients even get improvement of their RLS with the newer antidepressants.

Sent: Tuesday, June 05, 2001 6:24 PM
Subject: Augmentation with Sinemet?

Hi, I would like to know who long it would take to get rid of the augmentation from Sinemet. I am currently on it and would like to get off but I know their won't be any sleep for a while. Any information would be helpful.

Thank-you,.
Ann

Medical Reply

The augmentation may take a week or two to go away. The best way to get off of Sinemet is to start on Mirapex or Requip while tapering slowly off Sinemet.

Sent: Monday, June 04, 2001 10:38 PM
Subject: Iron Levels and RLS

I know that many who suffer from RLS and PLMD have low Ferritin Levels and that by bringing up the levels with iron supplements, have shown improvement. I know this because I am one of them. My question is this: Do doctors have any idea why one person can have normal iron levels their whole life and the next person needs to take massive iron supplements to keep the level where it needs to be? Do some bodies, for some reason, not absorb iron as well as others?

Could it be brain related and therefore a dopamine connection and an RLS connection? Today my neurologist said she thought they would not solve the mystery of RLS at least during her lifetime. (She's not that old!) I don't see that as a positive observation. Do all neurologists feel that way? I think I'm getting depressed!

Thank you for this great website. Of all the sites, this is the best and most informative. Keep up the good work.

Pat

Medical Reply

They are in fact getting closer about the cause of RLS and I suspect we will figure out he cause in the decade or so.

Iron levels are not that mysterious. Some people do not absorb iron as well as others (depending on factors in the stomach and intestinal systems), but mainly low iron levels are due to the loss of iron (menstrual loss in women and GI loss for others). With normal iron levels in the blood, there may still be low iron levels in the fluid surrounding the brain (the CSF-Cerebro Spinal Fluid) which may be a factor in causing RLS.

It is complicated, but I am sure they will figure it out in the near future.

Sent: Tuesday, June 05, 2001 3:45 PM
Subject: Do I have RLS?

I thank you for your website and the amount of information provided there.

I am 40 years old. My wife keeps telling me that my legs (mostly the left) kicks or jumps many times during my sleep. I sometimes feels that but there is no pain and it does not stop me from sleeping. This has been happening to me for the last 3 years. I as well experience some back pain in the morning (differs from day to day), but it soon disappears after I move for 20-50 seconds.

I have checked with back doctors and they have mentioned that I have no problem with my back. I sometime feel some pain at the very bottom of my back while sitting. All of these symptoms appeared 3 years ago after I had a non painful fall on by my fell on my butt. On hour later I felt great pain in my lower back when I was sitting without a chair (same as the start position for running race).

Do I have RLS ?

Regards,
Eyad

Medical Reply

It does not sound as if you have RLS. The back pain is not related to RLS but is likely just some muscular back pain. You may have mild PLMD with the leg movements that you have during sleep.

Sent: Wednesday, June 06, 2001 7:05 PM
Subject: My doctor is afraid to give me Mirapex

It is great to know that there are other people out there that have the same problem. I hate going to bed because I know I will wake up with the pains in my legs and the jerking. I get so upset that I hit them and swing them in the air and get up and walk around. My doctor finally put me on Mirapex but only gave me 10 pills. He did not want me to get to use to them. What a joke!

The Mirapex tablets seem to help. I am going to ask for more. I am also going to go to the health food store. It is such a shame we must suffer so much.

Thank you,
Rose

Medical Reply

Tell your doctor that tolerance is not a significant concern with Mirapex. If it does occur, you can change to another Parkinson's disease drug, such as Requip. You should not have to suffer.

A Reply from Rose

Sent: Friday, June 08, 2001 5:24 AM
Subject: Re: My doctor is afraid to give me Mirapex

I am going to see my doctor today for a prescription for more Mirapex. The health store told me a lady with restless legs has tried Butcher's Broom 4 caps. It is worth a try.

Rose

Medical Reply

A few RLS patients have gotten relief from Butcher's Broom, but the vast majority are not helped by that medication. It is very likely that if you can get adequate amounts of Mirapex, your RLS suffering days should be over.

Sent: Thursday, June 07, 2001 7:42 PM
Subject: RLS?

I have been diagnosed with RLS some 3 years ago. The only problem that I have with the diagnosis is that my husband says that as soon as I go to sleep my legs and or my hands stop moving. Most of my movement is during the day. Is this usual or does any one know?

Restless in Texas,
Kay

Medical Reply

You may be confusing RLS and PLMD. The PLMD problem is the movement of limbs which may occur at rest but is usually worse when asleep. It may vary with sleep stage so unless your husband stays up and watches you for hours, he may miss them.

RLS is a creepy crawly feeling in the legs or arms that comes at rest and clearly can not be appreciated when you are asleep.

Sent: Sunday, June 10, 2001 12:13 PM
Subject: Xanax for RLS?

I'm 31 and I was diagnosed with RLS a little over 4 years ago. Since then, I have been taking the 1.5 mg of alprazolam (Xanax) each night. This has really helped me to sleep better each night, but lately I've been waking up with headaches and have been more tired than I have become used to since taking this medicine. Could it be that my body is getting used to this medicine and therefore it has lost some of its effectiveness? Is there another type of medicine that I should consider?

What I like most about this medicine is the fact the I am able to fall asleep once I get into bed. The downside is the hangover affect that I deal with each morning for the first couple of hours each day. I have heard a lot about Ambien and was wondering if this would be a good alternative. If I take 1.5 mg of Xanax each night, what's the equivalent dosage of Ambien? Also, would it be difficult to get off of Xanax after taking it for so long?

Thanks for your advice,
Mike

Medical Reply

Your dose of Xanax is relatively high. You would need the higher dose of Ambien at 10 mg to get close to the same effect for getting to sleep. It is usually best to slowly decrease the Xanax dose over 1-2 weeks to taper off the drug safely. The daytime fatigue that you are feeling is likely due to the residual Xanax drug that is still in your system during the day. Ambien is much less likely to cause problems during the next day.

A better approach to treating your RLS would be to use Mirapex or Requip which take care of the creepy crawly feelings. You would then need a bedtime sedative only occasionally for any unusual insomnia problems rather than on a regular basis as you are now doing. That is a much better way to use sedatives.

Sent: Sunday, June 10, 2001 3:55 PM
Subject: RLS

I haven't gone to the doctor about my RLS, but I have had it for many years. I'm 48 now, my kids have it and my 4 year old grandson has had problems with it. My mom thought I was crazy and by golly she started having problems about a year ago. She's 75 years old.

I have found that if I get up and soak in the tub, with an electronic hand held game, it seems to help me. I stay in the tub untill I can't stay awake any longer. I then jump back into bed and I fall asleep fast. I don't want to take any drugs as I just had 65% of my liver removed due to cavernous hemangiomas. My liver is still growing back and I'm kind of protective of it. If you have any other ideas please let me know.

Thanks,
Linda R.

Medical Reply

It is very understandable that you are reluctant to take medications for your RLS at this point, but Mirapex or Requip would be very safe and effective to relieve your RLS symptoms. There is nothing else that you can do that even comes close to comparing with how well these drugs work for RLS.

You should also have your serum ferritin level checked as even minor problems with iron deficiency can worsen RLS.

Sent: Sunday, June 10, 2001 10:09 PM
Subject: PLMD Medications

I was diagnosed with PLMD last year. At the time, I was on several medications, esp. for depression and anxiety. At the time of the first sleep study, I was on .5 mg of Klonopin. Even so, it was quite clear that I had a severe case of PLMD (as well as sleep apnea). I was also taking Effexor (I would NOT recommend that drug to anyone - the side effects were awful and the withdrawals are PURE HELL - I had six weeks worth).

I am currently taking 450 mg/daily of Serzone (in place of the Effexor) and, after the first sleep study, went up to 1 mg of Klonopin. Well, I had a second sleep study done about two months ago and, while the sleep apnea is under control, the PLMD got WORSE. My doctor has increased the Klonopin to 1.5 mg but, my sleep problems remain awful. I'm still having problems getting to sleep and once I do, I have a TERRIBLE time waking up. (I'm currently on disability which means I don't have to set an alarm clock.)

The big problem is that I am sleeping 10 - 14 hours EVERY day! My doctor is continuing to recommend Klonopin and also says that the Serzone should help but I've now had a couple of other doctors tell me that I should get off the Klonopin (which I hear is fun) and take an anti-Parkinson's drug.

One last item. At the time I had the second sleep study, I was also on Zyprexa which, apparently, reacts with some of the other PLMD medications. I am no longer on Zyprexa.

Is the Klonopin responsible for getting the Rip Van Winkle existence I'm in and is there something else that would work better?

Jeff

Medical Reply

Klonopin is a very long acting drug with a half-life of 30-40 hours. A very high percentage of patients given this drug on a daily basis will continue to have daytime sedation. If your PLMD problem is not under control and is thus causing poor sleep quality, then that may be another very significant cause of daytime sleepiness.

The Parkinson's disease medications are a very good choice (Mirapex or Requip). They should be able to resolve your PLMD problem. Once on them, you should be able to slowly wean off of Klonopin.

Sent: Monday, June 11, 2001 10:17 PM
Subject: Are jerks at night RLS?

I am a 49 year old female who is in the beginning stages of menopause. I still have a period but they are VERY painful for me, especially the ten day period before I start. I began experiencing a "jerking" in my legs, ONLY in bed just as I was starting to fall asleep. The jerks would wake me up. Then the "jerks" began to increase in strength.

I found over a period of about six months that at certain times (especially when I was experiencing PMS or under a great deal of stress with work) the jerks would really jolt the entire half of my body. Sometimes the jerks would be from my arms. I finally contacted my doctor who prescribed Klonopin for me. It works. I can sleep without the fear of jerking. I also noticed, just once in a while, a tingling in my brain followed by a jerk.

Is this normal with some people with RLS? I am also a diabetic type II and am controlling currently with diet. I have a check up on July 2, 2001. Are these symptoms of RLS?

Sue N.

Medical Reply

It is possible that you have PLMD (leg jerking at rest or while asleep) but you do not have RLS which is a creepy crawly feeling in the legs while awake. It is more likely that what you are experiencing are hypnic jerks which tend to occur when just falling asleep to stage 1 sleep (very light sleep from which you can wake up and not be sure that you were even asleep) then waking up. Hypnic jerks are common occurrences that many people experience. They may have worsened recently due to your menopausal state.

Klonopin is used a lot for PLMD, but I far prefer a shorter acting sleeping pill. For hypnic jerks, no medication is really necessary, once you realize that it is not a problem. If you cannot fall asleep after one of these jerks, then a short acting sleeping pill like Ambien is a much better choice.

Sent: Tuesday, June 12, 2001 4:16 AM
Subject: Do I have PLMD or RLS or neither?

As soon as I lie down (whenever and wherever, on stomach or back) and my body starts to relax from it, my left leg jerks, involuntarily, specifically my left hamstring biceps and tendons, causing the leg to bend and then fall back quite limp. It can be a mini jerk, a series of mini contractions Or my leg can hit the ceiling sometimes. Sometimes a contraction stays that way for 3 seconds. Very very rarely does my right leg have the same problem(s).

I have no pain, no creepy crawlies, no sleepless nights, no problems healthwise, no fatigue during the day, no one else in family has it. After a while (say 10-15 minutes), the leg tires and I fall asleep normally. While I am sleeping, these things don't happen. I just wake up in the morning. When I am not "feeling" sleepy, and am just trying to sleep while tossing in bed, then the contractions can just keep carrying on erratically for even an hour! and I miss lying down with my leg stretched out straight and relaxed.

Touch wood, I exercise regularly, eat well, and sleep well. Am male, 34 years old, slightly underweight. Sometimes I can feel the arousal coming to jerk the leg and can even control it to the extent that the jerk doesn't occur or occurs with less force. Sometimes, it happens while I sit with my legs crossed, left over right, though then its very minor, more like a drag.

This has been going on for almost 5 years. Sometimes a good workout makes it worse, while sometimes it makes it gone completely. What is wrong? And what should I do ?

Thanks a bunch,
Darius

Medical Reply

If the leg jerks come in series of three to about 30 or so, separated by 5-30 seconds then it sounds as if you have PLMD. If you are doing well with your PLMD, then no treatment is necessary. If the PLMD becomes bothersome, prevents you from sleeping, etc. then there are medications that may be helpful (the Parkinson's disease drugs, Mirapex, Requip, etc.).

Sent: Wednesday, June 13, 2001 12:20 PM
Subject: RLS better with Ultram.

I would like to share my experience with RLS. I am 43 and have had RLS for about 2 years. It has been especially bad the last two months. My legs are not only bad at night, but also during the day. There is not a worse feeling in the world than trying to fall asleep, and not being able to. It affected my job performance and I was always very tired throughout the day.

I also have a back condition that my doctor was prescribing Vicodin, which helped not only my back, but also my legs. Since he was concerned about me becoming addicted, he changed the medication to Ultram. This for me has been a God send. It does not help with my back pain as much as the Vicodin, but eliminates my RLS 100%. Different things work for different people, but if you have not tried Ultram, I highly recommend it.

Medical Reply

We use Ultram quite a lot. It has a much lower addictive potential than the narcotic medications. Mirapex or Requip tend to work even better than Ultram/narcotic medication and should be considered before relying on the pain medications on a daily basis (as they are safer and non-addicting).

Sent: Thursday, June 14, 2001 1:54 PM
Subject: RLS and Lipitor/Zoloft

I am a male 66 years of age in generally sound health.

I've had mild but classic RLS symptoms for many years. I've been on 10mg Lipitor for about 5 years to control cholesterol/LDL levels and 150mgs of a SSRI for depression for the past 14months. In the past year or so my RLS symptoms have intensified. My mental health care provider thinks it is likely due to the Lipitor and my Internist thinks it is more likely due to the SSRI. Do you have any thoughts on the subject and what, if anything, do you recommend?

Thank you,
Mike S

Medical Reply

It can be somewhat difficult to answer your question as RLS may worsen or get better at times for no apparent reason. There are many other factors (most of which we do no know yet) that influence RLS other than medications.

Having said that, my best bet is that the SSRI antidepressant (Zoloft) is the culprit. Some RLS sufferers are actually helped by the SSRI's, but probably more are worsened by this class of medication. The only way to know for sure would be to stop the SSRI for a while and see if this improves the RLS problem.

Sent: Thursday, June 14, 2001 4:59 PM
Subject: Home remedy for RLS ?

I've had RLS for years (I'm now 68). For ten years I have complained to my physician and he just laughs it off. I finally went to a sports medicine doctor who gave me several suggestions:

1. Take a couple gulps of quinine water before bedtime. I still don't know if it will work bit it tastes terrible.
2. Take a potassium pill daily.
3. If the first two aren't effective take a sports drink such as Gatorade.

In the past I've tried various ointments but they weren't successful. Maybe this letter will be of use to a sufferer.

Uriah H.

Medical Reply

Most of the "so called cures" for RLS end up helping an extremely small minority of RLS sufferers. There is very little (if anything) over the counter that has any significant benefit for RLS.

If you want relief, then have your doctor prescribe Mirapex or Requip.

A Reply from Uriah H.

Would seeing an acupuncturist do any good for RLS. I called a guy who said he could cure the disease but he also confessed that he never heard of RLS.

Uriah H.

Medical Reply

A few RLS sufferers have gotten a measure of relief from acupuncture, but the vast majority of patients get no help from this therapy (despite what the acupuncturists may claim).

Sent: Thursday, June 14, 2001 8:20 PM
Subject: Sinemet and stiffness

I was diagnosed with PLM and prescribed Sinemet CR, to be taken at bedtime. Approximately 2 days after I began taking it, I developed terrible back pain, which occurred only when I sat down. After a week or so, the pain decreased but I have been left with stiffness in my lower back when I move from a sitting to standing position. Is it possible this is caused by the Sinemet?

Medical Reply

What you are describing does not sound like a side effect of Sinemet, but anything is possible. Try going off the Sinemet and see if that helps. If the pain is caused by Sinemet, then Mirapex or Requip may work as well (or better) and not have that side effect.

Sent: Friday, June 15, 2001 3:30 AM Subject: RLS

To TB,

I know exactly what you are going through as far as falling asleep at the wheel and RLS. The kind of medication I take for RLS may not be what most doctors will prescribe for you. but it works for me and has for six years. It's called Methadone and is commonly used for drug rehabilitation. It is a synthetic drug and you don't need to take very much, say 5-10 mg a day before bed time.

It will handle your RLS and you're not as likely to fall a sleep at 7:00 in the morning.One must be careful on how much you take and keep it under control, because there are some side effects like sex drive, hunger for sweets and some constipation.

Vance

Sent: Saturday, June 16, 2001 11:24 AM
Subject: Worsening RLS off Zoloft?

After being on Zoloft for four years I have been off it for about a month. The past few weeks I have had terrible nights of sleep due to restless legs. I even try napping during the day but am also awakened with restless legs. Could this be a side-effect of coming off of Zoloft? Since adolescence I have had trouble with restless legs at night but an aspirin or two always helped alleviate the pain. This treatment does not work now.

Also I have recently started taking Prometrium. Could this have something to do with it also? Any insight would be greatly appreciated!

Sincerely, Connie

Medical Reply

Zoloft, like many SSRI antidepressant medications, may help or worsen RLS. It may have been helping your RLS and stopping it may then seem like the RLS is worsening. Prometrium (progesterone) should not have a significant effect on your RLS, but some RLS sufferers do notice changes in their RLS symptoms with hormonal changes.

Sent: Monday, June 18, 2001 5:42 PM
Subject: Taking Sonata

I thought I was losing my mind. I would wake every hour with this uncontrollable urge to walk, rock, just move and do it now. So... I would go to the kitchen and eat and then go back to bed for another hour before I would wake and repeat the process all over again. I have gained 14lbs and want to scream.

Finally, my Mom said she had RLS. What the heck was that? I saw my internist, who was not very familiar with RLS. He took out the book and prescribed that horrible Klonopin. I still woke with my legs jerking around, but now I was drugged all day.

Now I am taking Sonata, which is new I guess. The pharmacist seemed to like this drug. I'm taking tonight for the first time and will let you know what happens. I have also made an appointment with a Neurologist for July. Do you think that is a necessary step?

Now if I can sleep and not eat six times a night it will be a miracle.

Thanks for this site,
Christina

Medical Reply

Sonata is a reasonable drug to use for RLS if it keeps you asleep and you feel rested and well during the day. Mirapex or Requip are better choices as they actually relieve the RLS symptoms (rather than just putting you to sleep so you are unaware of the RLS). Depending on how you do with the Mirapex or Requip, you can even add Sonata from time to time if you need it.

Sent: Wednesday, June 20, 2001 1:33 PM
Subject: RLS/PLMD

I have a rather bad case of RLS/PLMD. I have symptoms of RLS all day, and cannot sleep at night because of the PLMD. I also have fibromyalgia.

I have a wonderful rheumatologist, who will try anything I find from a reputable source. We both are feeling "demoralized" in trying new things with no (or paradoxical) results. Even Ambien keeps me awake and puts me in a trance like state. I keep a medication log, and have had little success with antidepressants, although I certainly could use one. At one time I went 9 months without sleeping because of the PLMD. I insisted on a sleep study, was diagnosed and later found this wonderful rheumatologist.

Currently I am taking 1.5 mg. Klonopin (not prescribed by him, but by the sleep doctor no less!!). As soon as I try to wean off, (about 1/4 tablet every week), I start experiencing PLMD's again, usually within 24 hours.

I am currently at the increased stage of five of the .250 mg. tablets of Mirapex a day, prescribed by my new doctor. Actually, I felt rather well-controlled for RLS pain on three of the .125 mg. tablets daily, but they had no effect on my sleep. So, I continued the Klonopin for PLMD.

This past week I experienced rather severe pain in my legs again, and my doctor told me I could try 5 tablets instead of three of the .250 mg.tablets. Now I am wondering three things:

1. Could the pain have come from taking a 5/day antibiotic? The timing concurs with my increased pain.
2. Can I start decreasing the Klonopin (and by how much) now that I'm on a higher dose of Mirapex? Will it help my PLMD?
3. Will I still need a sleep aid?

Thank you for listening to a "capsulized" version of my life for the past three years!!

Denise

Medical Reply

The increased pain in your legs should not be from Mirapex (but as you stated before, you tend to get paradoxical reactions to medications, so anything is possible). The only way to be certain of this is to decrease the Mirapex and see if the pain goes away, then comes back with increasing the Mirapex dose.

It is very hard to know when Mirapex is working for PLMD. The extra doses of Mirapex should be taken just before bedtime if they are to help your PLMD. To determine whether or not Mirapex is helping your PLMD (or that you are taking the correct dose to help your PLMD) really requires a repeat sleep study. Since this is impractical to do every time you make a dose change, it is reasonable to just evaluate how well you sleep by how good you feel during the daytime.

This may be difficult for you as you also have fibromyalgia and may not feel well due to that condition (that is if the fibromyalgia is not being caused by the PLMD/poor sleep which is quite possible). Also, Klonopin causes daytime sleepiness and thus might cloud the picture. Shorter acting benzodiazepines, such as Xanax, may be better.

Some PLMD patients do need sleeping pills with Mirapex while other do not. Again, the assessment for sleeping medication is similar to the above decision to increase Mirapex or not.

A Reply from Denise

Sent: Sunday, July 08, 2001 5:00 PM
Subject: Re: Mirapex

Thank you, as always for your insightful reply. You always set me back on the right track, and give me something intelligent to take to my doctor.

I am officially (as of last night) off of Klonopin, although I'm sure I have a few more days to be really free of it. I took 1/4 of a 1 mg tablet last night and celebrated!! I had an awful night, FULL of PLMD, but I know it will get better. Now (or very shortly) I can concentrate on getting the right dose of Mirapex or ask for a switch to Requip.

I'm still not sure if my exacerbated PLMD symptoms (and I mean *exacerbated*) are from too much Mirapex or from withdrawal from Klonopin, but I should know in about a week. I really feel that THIS time, I'm going to see results. I'm just so glad to be off of Klonopin. The past few weeks have been tough, and I hated to bother my doctor with the symptoms, but I made it. That's what counts.

Now, I'm going to concentrate on getting the right medication, one thing at time. No more guessing what is causing what...!

Bless you,
Denise

Sent: Thursday, June 21, 2001 9:30 AM
Subject: Dose of methadone for RLS?

I am a seventy two year old active lady, recently diagnosed with RLS. I'm concerned about taking methadone, 5 mg four times a day. My neurologist tried Requip for three weeks with relief for two weeks. After that the leg cramps returned , about three or four times a week. What is your theory on taking such a strong dosage of methadone ? Any suggestions would be appreciated

Sincerely,
Jackie C.

Medical Reply

It is always better to treat RLS with medications such as Requip, but if they fail then pain killers such as methadone are reasonable. Four methadone per day is considered a moderately high dose for RLS, so it would be nice to use non-pain killers to be able to reduce the dose.

Even though Requip did not work, Mirapex may still be helpful if titrated up to the right dose (see our RLS Treatment Page for details on how to take this drug). Other classes of drugs such as Neurontin may also be useful.

Sent: Wednesday, June 27, 2001 1:51 AM
Subject: RLS my story

I am a 32 y/o single male, 6'3", about 280 pounds. I am generally healthy, except for high blood pressure. I have not had any serious or major medical problems in the past.

About four years ago, I noticed that, when I would lay down to sleep, and ONLY when I would lay down to sleep, my legs would begin to "twitch", both legs. The feeling is extremely difficult to explain, but it feels as though both legs are tied down, or are in a tight coffin. Often, it also feels like there are bugs inside the legs, but not as often as the feeling of my having to "move them" or they will EXPLODE. As a result, I am forced to move both legs very rapidly, in a short kicking motion, about every two minutes, for about 30 seconds each time, and still, the feeling persists, and is literally UNBEARABLE.

The feeling is so awful, that I often simply sit up at the side of the bed, or just walk around the house. The most scary part of this medical problem is that it seems to get worse over time, There are RARE occasions when my legs are fine, but that might only be one night out of every 40 or 50.

The primarily reasons I feel this "disease" is so serious are:
1) Doctor's don't seem to be well informed about it, they find it difficult to diagnose.
2) Doctor's are often reluctant to prescribe anything at all for relief.
3) This medical mystery keeps me up for three to four hours EVERY night.
4) Except for the RLS, I could easily sleep, because I am VERY tired.
5) The problems associated with RLS cause mental frustration and fatigue.
6) Other people seem to think it's a joke, something made up, or a psychological problem.

I have tried flexing my legs, rubbing them, stretching, walking, crossing my legs, twitching just my feet, and hot baths or showers. None of these help, or if they do, they help so little, it isn't noticeable. I have tried ALL over-the-counter sleep aids, including herb and mixes from well known vitamin chain stores. NONE help at all.

I have been prescribed several different medications, including the one for Parkinson's disease, and that seemed to help a VERY little, but not enough. Flexeril, a muscle relaxor, showed no signs of helping, either. So, I stopped using those.

THE GOOD NEWS: I was prescribed Triazolam (generic for Halcion), and it actually helps (completely) about 75% of the time. I currently take one or two tablets of Triazolam 0.25 mg per night, every night. That has been a god-send for me. Also, narcotic pain medication helped for a time, completely relieving the symptoms, maybe 80% of the time, but most or all doctors are VERY reluctant to continue with that type of medication treatment. Even asking for those types of medications usually end up with the doctor looking at you like you're a pill addict.

I can only suggest a few things that have helped me in some way: hot baths/showers before bed, and getting a prescription for Triazolam, if the doctor is willing to try that for you. I have also heard that a combination of Triazolam and narcotic pain pills (in small doses) helps even better, but that is even more difficult to obtain through a doctor.

To all you other sufferers, god help you, and I know how horrible this can be. I get scared thinking that it will continue to get worse, and I will be spending the rest of my life getting two and three hours of sleep a night, which is about where I am headed now.

I think it would be a VERY good idea for people like us to start emailing to doctors, the AMA, JAMA, Dr. Dean Edell, etc. We have to spread the word that this is serious, and we need help.

Good luck to you all,
Shawn in Reno

Medical Reply

You have a classic case of RLS and should have had much less trouble getting treatment, but unfortunately, most RLS sufferers have difficulty getting help.

Even though you have tried one Parkinson's disease medication, it is worth trying Mirapex or Requip as many RLS sufferers respond to one dopamine drug when not responding to another.

Sent: Wednesday, June 27, 2001 7:20 PM
Subject: RLS better with multiple medications?

I am a 43 year old male and have most of the symptoms list here including pain. Most of my previous physicians couldn't find anything wrong with me. One orthopedic doctor told me it was bursitis. he did a numerous tests to rule everything else out including X-Rays, Blood tests and MRI's. He had prescribed Relafen, Soma and Ultram. It seemed to help for a few years but I constantly felt drugged.

Last last year I found a new doctor who quickly diagnosed that I had RLS. He started out with Neurontin (300 mg) at night and it helped me sleep for a short while, but the daytime symptoms seemed to get worse so it gradually up to 30 0mg 3 times a day. That worked for a few months and then the insomnia kicked in again. Klonopin was added at first (.5 mg), but daytime fatigue kicked in shortly. Next we tried Ambien (10 mg) but that last its effectiveness after a few weeks. Thanks to this website I learned that these drugs could cause dependency and I asked him to take me off of them.

Next Neurontin was upped to 400 mg 3 times a day and 50mg of Trazadone was added at night. That allowed me to sleep pretty well and the daytime symptoms were not too bad for the first few weeks. Then all of a sudden many of the muscles in my legs and arms started twitching constantly and which lead to pain. 12.5 to 25 mg of Vioxx seems to help the twitching and pain.

On Monday we decided to try Mirapex. This was the worst two nights I have had. Very little sleep, fatigue and nausea. I am going back to the Neurontin, Trazadone, and Vioxx until my next visit.

Are there any concerns with taking so many medications to maintain control? Is the muscle twitching a symptom of RLS?

Thank you,
Chuck B. in New Jersey

Medical Reply

There is no problem with using multiple medications for RLS and in fact, it may allow smaller doses (thus less potential for side effects) of the drugs used.

Even though you got nausea with Mirapex, it does not mean that other dopaminergic drugs (such as Requip) will do the same. You did not say what dose you started with, as I recommend the smallest dose possible (as low as 1/2 of the .25 Requip or .125 Mirapex) to start with, then increase if needed slowly (by 1/2 tablet per week) if needed.

Sent: Friday, June 29, 2001 9:53 PM
Subject: RLS

I have been suffering from RLS for years...about a month ago I was in a car accident and suffered whip lash...since then I have had problems with having restlessness (especially in my left leg) earlier than usual...could this be related to the accident? Thank you for any information on this.

Sincerely,
Lynda M.

Medical Reply

It is very common for RLS to worsen or get triggered by trauma to the body, especially to the back. This is not well understood, but many RLS sufferers have had your unfortunate experience.

Sent: Saturday, June 30, 2001 5:56 PM
Subject: dependency

I take Klonopin 1 mg. nightly. I also substitute Ambien 5 mg sometimes. I have to have one or the other to sleep. I take Mirapex 0.125 which relieves the leg jerks but I still can't sleep. What are chances I am addicted to the sleep meds and if so, how do I quit?

Thanks,
Antsy 2

Medical Reply

It is difficult to say whether or not you are addicted to you sleeping pills as your persistent insomnia could be due to dependence on Klonopin or from a conditioned insomnia due to your previous RLS/PLMD problem.

Ambien is not an addictive drug which is one of the many reasons that I prefer it over Klonopin. With the supervision of your own doctor, you should consider slowly weaning off of Klonopin and seeing if you then need any sleeping pill at bedtime.

Sent: Sunday, July 01, 2001 9:49 AM
Subject: Mirapex

I have had a severe case of RLS/PLMD since an auto accident 3 years ago.

I was started on Klonopin and gradually increased to 1.5 mg. before bedtime, which eventually became ineffective. Then I found your website and asked my doctor to work with me using Mirapex. I printed your whole article for him and we started at the .125 mg. dose, working up to 3 per day. After about a week or so, I started having leg pain during the day. My doctor increased the dose to .250 mg. 5 times per day (2 in the a.m, one mid-day, and two in the evening). Same results. Relief day and night for about a week or so, then leg pain starting up again in the day and evening.

My sleep has improved greatly on Mirapex (and my husband said my PLMD's - though still frequent, have decreased in intensity since Mirapex.) Before Mirapex, I would wake every 6-10 seconds with jerks that would startle me. Now my husband says that the PLMD's are just flutters, which I am sleeping through. It's just the day/evening pain that bothers me. It is a deep ache in my legs from top to bottom.

My questions are:

1. Am I at the maximum dose of Mirapex that would help a severe case of RLS/PLMD? Should I try Requip?

2. Or - is there an add-on that would take care of the day pain if I can't increase the Mirapex? I really hate to give it up. This is the first time in three years that I have slept so soundly, and I'm finally getting off of Klonopin! I don't experience any side effects with Mirapex (except constipation). I feel it's a small price to pay for the increase in my quality of life.

3. I am also SLOWLY weaning from Klonopin - I'm down to .5 mg. from 1.5 mg. nightly. Could this be causing the leg pain every day? I'm cutting down by 1/4 of a 1 mg. tablet every 5 days.

Thanks, again, for listening (and for caring). I'm going to get this under control. I know I am!

Medical Reply

It is difficult to say what is causing your leg pain as it could be a side effect of Mirapex (not very common), withdrawal from Klonopin, or something else (?).

If your RLS/PLMD occurs only at bedtime, there is no need to take any daytime Mirapex. Just take the smallest dose that is effective 1 hour before bed. Do not take more Mirapex for the dull aching pain.

Once you are completely off Klonopin and on less Mirapex, if you still have the aching pains, then consider a change to Requip.

Sent: Sunday, July 01, 2001 11:39 PM
Subject: Mirapex holiday?

I have a question regarding Mirapex. I am currently taking 2 tablets (.125 mg) about 1 hour before bedtime. This seems to be holding me pretty well. However, I am wondering if I will need to take a "drug holiday" at some point. (I have been taking the 2 tablets for about 3 months now, up from 1 tablet at bedtime for the past 1 year.) I have no real complaints. If I try to nap in the middle of the day, my legs bother me, but I generally like to hold off taking the Mirapex until nighttime.

So, my question is, can I continue this routine indefinitely or will I need to take a break? Also, if I do need to take a break from the Mirapex, how long should the break last?

Thank-you for any input you might have

Medical Reply

Most RLS sufferers do not get tolerance to Mirapex. There should be no reason for you to take a drug holiday as you are doing well on a small dose.

Many patients will use Mirapex during the daytime (one hour before going to movies, car rides, etc.) when needed and there should be no problem with that (but check with your doctor before adjusting your dose).

Sent: Thursday, July 05, 2001 8:52 AM
Subject: ahives with Mirapex?

I've been taking Mirapex for about 5 mos. for PLMD. I'm a Registered Nurse. For the first time in 16 long, sleep-deprived years, I am lying still all night, sleeping like a rock! I am thrilled!!

HOWEVER, I'm getting HIVES for the first time in my life. And itching accompanies the hives. I'll get just 2-3 hives, usually on my hip or leg or belly. I usually take 0.125 mg of Mirapex about 9 p.m. The hives began occurring about a month ago, around suppertime (5 to 6 p.m.). Since Mirapex was the only thing I'm doing differently, I took 1/2 of the pill about 6 p.m. Within a couple of hours, the hives & itching disappeared. Now today for the first time, I have 3 hives on my leg in the MORNING. Also, On 2 occasions I have completely forgotten things I'd normally remember.

My question: are HIVES & GLITCHES IN MEMORY associated with Mirapex???

Thank you,
Cathy

Medical Reply

Hives are a common allergic reaction to drugs or almost anything in your environment which thus makes it difficult to pin down. The only way to know for sure is to stop the Mirapex for about 5-7 days, see if the hives go away, then see if they come back with the re-introduction of Mirapex. The same goes for the glitches in memory.

If Mirapex is the culprit, then a change to Requip may work out well.

Do not take antihistamine drugs (Benadryl, etc.) which are commonly prescribed for hives as this class of medication almost always worsens RLS.

Sent: Thursday, July 05, 2001 10:22 AM
Subject: Extreme Heat

What percentage of your patients are troubled by extreme heat? We have had daily temperatures over 100 degrees the past week and I have definitely noticed my symptoms getting worse. If it is a high percentage, is there a reason for this or is it just another "mystery" of RLS?

Medical Reply

As you guessed, this is just one of the many mysteries of RLS. Some are bothered by heat, others by cold and many not affected. That is about all we know about the relationship of ambient temperature and RLS.

Sent: Friday, July 06, 2001 11:30 PM
Subject: RLS

I'm 42 and married with three young children. Frustrated at not being able to sleep due to my restless legs (and the heat), I finally could not stand it anymore and thought I would check out restless leg syndrome on the Web. Until my Dad mentioned that he had it and that it had a name, I thought it was just a weird quirk of mine. My symptoms are not as severe or as frequent as others I've been reading about, but it does drive me crazy at times.

I find that a tension builds in my legs and I have to move them. Then I get up and do some squats or other exercises to relieve the discomfort. I've gone to another bed at times so that I won't bother my husband. At one point I thought it might be associated with alcohol consumption, but one day I joined my family after work at my in-laws where all I had was water or a soda. On the way home, my restless legs drove me crazy. I could hardly wait to get out of the car. I have not found a consistent pattern for a cause.

Another symptom I'll have are the regular twitches I've read about in others' letters. I'm not aware of them, but my husband will observe and time the leg movements. So then I'm keeping him up! I wasn't sure there was a connection between these twitches during my sleep and the tension that keeps me from sleeping. Thanks to this website and the letters, now I know.

Thanks,
Lisa

Medical Reply

It sounds as if you have a relatively mild case of RLS. If your symptoms get worse consider Mirapex or Requip.

If you want to help your husband's sleep (if he is bothered by your leg jerks at night), get twin beds and move them a few inches apart at bedtime.

Sent: Sunday, July 01, 2001 9:49 AM
Subject: Mirapex

I have had a severe case of RLS/PLMD since an auto accident 3 years ago.

My questions are:

1. Am I at the maximum dose of Mirapex that would help a severe case of RLS/PLMD? Should I try Requip?

2. I am also SLOWLY weaning from Klonopin - I'm down to .5 mg. from 1.5 mg. nightly. Could this be causing the leg pain every day? I'm cutting down by 1/4 of a 1 mg. tablet every 5 days.

Thanks, again, for listening (and for caring). I'm going to get this under control - I know I am!

Medical Reply

It is difficult to say what is causing your leg pain as it could be a side effect of Mirapex (not very common), withdrawal from Klonopin, or something else (?).

Once you are completely off Klonopin and on less Mirapex, if you still have the aching pains, then consider a change to Requip.

A Reply from Denise

Sent: Sunday, July 08, 2001 5:00 PM
Subject: Re: Mirapex

Thank you, as always for your insightful reply. You always set me back on the right track, and give me something intelligent to take to my doctor.

I am officially (as of last night) off of Klonopin, although I'm sure I have a few more days to be really free of it. I took 1/4 of a 1 mg. tablet last night and celebrated!! I had an awful night, FULL of PLMD, but I know it will get better. Now (or very shortly) I can concentrate on getting the right dose of Mirapex or ask for a switch to Requip.

I'm still not sure if my exacerbated PLMD symptoms (and I mean *exacerbated*) are from too much Mirapex or from withdrawal from Klonopin, but I should know in about a week.

I really feel that THIS time, I'm going to see results. I'm just so glad to be off of Klonopin. The past few weeks have been tough, and I hated to bother my doctor with the symptoms, but I made it. That's what counts. Now, I'm going to concentrate on getting the right medication, one thing at time. No more guessing what is causing what...!

Bless you,
Denise

A Reply from Denise

Sent: Sunday, July 08, 2001 11:35 PM
Subject: Re: Mirapex

As you can see - I'm not doing well - yet... Tonight was the first night with no Klonopin, and I took .125 Mirapex (only dose today) and IMMEDIATELY upon going to bed, the jerking started. About a minute apart. So, three hours later, here I am. Wondering what to do next.

I'll stay the course, but I can't help but wonder if Klonopin was masking all of this, or if the Mirapex is causing it. Waiting it out is so tough!!! Almost as tough as no sleep, night after night. How I wish you lived in my city.

But, I've lasted this long. A few more days...

Denise

Medical Reply

Check with your doctor about increasing the bedtime dose of Mirapex to two of the .125 mg tablets tonight (or to 3 tablets if you were taking 2). Going off Klonopin will definitely cause worsening of the RLS/PLMD symptoms. It may be necessary to substitute Ambien (non-addicting) for Klonopin until you reach the correct bedtime dose of Mirapex.

A Reply from Denise

Sent: Monday, July 09, 2001 7:05 AM
Subject: Re: Mirapex

Thank you again. I'm going to call my doctor right now. I'll keep you informed.

I guess I am just amazed, because I didn't have these severe symptoms when I started taking Klonopin. I was probably having PLMS, but they didn't jolt me awake. Just a gentle awakening, and I didn't know what happened. I guess that's why it took so long to get a diagnosis.

Now here we are 2-3 years later, and after getting off Klonopin, I'm getting jerked (and I MEAN jerked) awake every minute. It's scary.

Last night the jerks didn't stop at all. As a matter of fact, I'm sure if I went back to bed, they would begin again immediately. I live on the east coast, and was out of bed until 4:30 a.m. Then I tried to go to sleep, but got approximately 20 minutes out of the next four hours.

I usually take these things in stride, but I'm afraid this time. I apologize for writing so often, but these nights are getting longer and harder to tolerate. I need your help so much right now. I really appreciate your input - more than you can ever know.

Denise

Medical Reply

Withdrawal from Klonopin can be difficult and may take another week or so to be complete. In the meantime you will need extra help.

A Reply from Denise

Sent: Tuesday, July 10, 2001 5:35 AM
Subject: Night two

Well, I got through night two without Klonopin. As you suggested, I took three (was taking two) Mirapex .125 and got a Rx for Ambien from my doctor. I had to get up early this morning, so I went to bed at 10:30, after taking the meds at 10:00.

I was anxious, to say the least. It's been a bad few weeks! The first few hours, I could still feel the jerks, but I sort of slept through them. It was like "dreaming I was jerking." They were strong, but I slept between. Fragmented sleep - but better than I have been doing!

Then about 4:00 I moved to a separate bedroom (husband is a 12 door snorer...) and I settled in until about 6:30. I woke up a few times, but I slept sounder than the first half of the night. I am grateful for as much sleep as I got, and I'm going to be optimistic that the jerks will diminish and I will get better quality sleep as Klonopin withdrawal progresses. Just one question today:

Will taking three Mirapex tablets gradually build up and help lessen the jerking, or do I still increase the dose until the jerking stops? My doctor knows that I am working with you, and knows he can trust me. He has prescribed enough Mirapex to experiment with to arrive at the correct dose.

Thanks for your concern and your time in helping me through this.

Denise

Medical Reply

Mirapex works immediately and does not "build up". We increase the dose slowly (at intervals of 5-7 days) to avoid side effects. If you are not better in a week (give the Klonopin a better chance to get out of your system), an increase in the dose would be reasonable.

A Reply from Denise

Sent: Wednesday, July 11, 2001 4:26 AM
Subject: Re: Night three

Thank you, again, for your reply. You are keeping me sane, since this is the hardest thing I've ever done.

Night three went a little better. The day was touch and go, I was teary, anxious and ready to lash out at everyone for this mess. Then, in the early evening, I started to feel "normal" periods off and on for a few minutes at a time. I had taken one Mirapex at dinner time.

So, off to bed with 3 Mirapex and 10 mg. of Ambien. I waited 45 minutes this time before I went to bed, and I can't even remember falling asleep. My husband works late, and I usually stay up until he gets home, but we have agreed that it's best that I go to bed early for a few weeks, until this gets easier - around 10:30 p.m.). I vaguely remember him getting into bed (and having just a few PLM's during the night). I stayed in bed until 4:00, when his snoring got worse, and moved to another room. I slept off and on until 6:30. I know it's not the greatest night (if you're someone who sleeps 8 hours straight), but it's like a miracle to me. I think it's getting better.

The PLM's mostly feel like "bubbles popping in my legs" (and other extremities) during the day now, and become worse at night. I had a few bigger ones this morning after I moved to another room (between 5-7).

I will heed your advice about waiting another week to increase Mirapex (if needed). I truly want to believe that each day that the Klonopin is out of my system will get easier to manage, and will be managed with less medication. But, I'm going to be patient and do this the right way. Right now that's: one .125 mg. Mirapex at dinner, and three .125 mg. Mirapex at bedtime, with 10 mg. of Ambien.

Thanks for your help. Yesterday was so bad, I think I cried 40 times. It's a wonder I didn't write to you 40 times.... But I figured I'd better restrain myself!! This WILL get easier.

Denise

Medical Reply

Unless you are getting RLS (funny feelings in your legs associated with an irresistible urge to move your legs which helps relieve the funny feelings at least for a few seconds) then I am not sure why you even need the Mirapex at dinner.

For insomnia patients, a regular bedtime and wake time are usually very important and should be adhered to, if possible.

Stay on the 3 Mirapex before bed (30-60 minutes before) for several more days and see how you do.

A Reply from Denise

Sent: Thursday, July 12, 2001 4:53 AM
Subject: Just a quick note

Just a quick note today. Last night is a mystery to me. I went to bed after .375 mg. Mirapex and .10 mg Ambien. I settled in with great confidence after the improvement in sleep, mood, anxiety, etc. the day before.

Well, to say the least, I was shocked. I didn't fall asleep at all until 5:30 this morning - for one hour. During the night I had PLM's with the same frequency and intensity as before. My husband and I also noticed that I had an elevated body temperature.

Now I'm really confused! (But hopeful that it was a "Klonopin surge"...)

Denise

Medical Reply

It is difficult to understand what happens on a day by day basis. I would suggest do the same for the next few days and see if it improves.

A Reply from Denise

Sent: Friday, July 13, 2001 11:47 AM
Subject: PLMD

I'm sorry to say that things aren't going too well. Last night I took my Mirapex at 11:30, and the Ambien at 12:00. I did fall asleep, but was wakened by an almost violent twitching around 2:00. It actually made my arms hurt. The strange thing was that I had an almost "amnesia-type feeling" - I couldn't remember going to bed! After that I wasn't able to sleep more than a few minutes at a time.

Today, I feel weak, nauseous and very anxious. It seems like years since I've slept - but the very SECOND my body relaxes, the twitching starts. It's been 6-7 days since my last 1/4 of 1 mg. Klonopin.

I put in a call to my doctor, but he's on vacation. The service said someone else would call me.

I'm sorry it isn't good news. I feel very depressed today, but I won't give up. I've been at this for 3 years now - sooner or later I'll have to hit the right medicine. It's just tough to be let down time and again. But, I'll get my fighting spirit back - I just need sleep so much right now.

Denise

Medical Reply

Any sleeping pill, including Ambien can cause that funny amnesia like feeling if there is some other stimulus (in your case, RLS/PLMD) keeping you awake.

It may be time to increase your Mirapex by one more tablet before bed.

A Reply from Denise

Sent: Saturday, July 14, 2001 5:27 AM
Subject: Re: PLMD

NOW I know you are my guardian angel. I had called my doctor yesterday morning, and he is on vacation. The service promised me that someone would call me. We stressed the importance of talking to someone, and told them of my Klonopin withdrawal, and that I would be alone from 2:30 - 11:30 p.m.

I sat by the phone all day, crying and dejected and sleep deprived, until 7:00 p.m. Nobody called me.

Around 12:00, I took my 3 Mirapex and Ambien and set off to bed for who knows what. Just as I turned out the lights, your e-mail came. I hurriedly took the 4th Mirapex. What a difference! I slept from 12:30 until 7:30 with few arousals. I think I had two PLM's that didn't rock my world, but I was aware of them and went back to sleep.

I will continue on this regimen, and certainly keep you posted on results.

Denise

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