If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Monday, August 23, 1999 7:29 AM
Subject: Flexeril for RLS?
Do you have any information on Flexeril (Cyclobenzaprine) in the treatment of RLS/PLMD? It has been prescribed in treatment for TMJ Disorder pain and seems to effective for sleep.
Flexeril is a muscle relaxant which has no real role for RLS. Most muscle relaxing medications do not really relax muscles, but rather act centrally (on the brain) to make people drowsy, relaxed and sleepy. Once generally relaxed, the muscles may then also relax. Valium or Xanax work as well or probably better.
Sent: Wednesday, August 25, 1999 7:02 PM
I have suffered from "twitchy legs" for fifteen years. I have never heard of RLS! I found your website by entering "twitchy legs" in a search on Alta Vista. Over the years I have been variously diagnosed as having CFS, Myalgic Encephalomyelitis, PVFS, but I believe my doctors think I'm a nut.
My father suffered from RLS for thirty years, and died of ischemic heart disease. His mother suffered from RLS for thirty or more years, and also died from ischemic heart disease. Is there a link? I am truly thankful for your website. I've only had internet access for a week, but I think tonight (I cannot sleep) I will read every bit of your site.
You will see after reading the letters on our site that your frustration in getting appropriate medical care for your RLS is very common. Most physicians will misdiagnose (or not diagnose at all) this disease leaving their patients suffering needlessly.
If Mirapex or Requip is not available in England, then have your doctors prescribe Permax for you.
Sent: Wednesday, August 25, 1999 6:58 PM Subject: Several questions
Your Web site is wonderful! I don't feel quite so desperate any more. Thank you!
I'm on .25 mg of Mirapex after having experienced pretty severe side effects on Permax (dizziness, nausea, trembling). Although this is a fairly low dose, the RLS is better - the jury is still out on my PLMS. I'm still waking up very tired and am sleepy almost constantly during the day. My doctor wants me to increase the dosage, but the last few times I've taken an additional half, I'm "wired" and have difficulty getting to sleep (as well as experiencing some nausea). I noticed some of this on Permax and earlier on Mirapex. I realize there could be other things causing me to have trouble falling asleep. Is this all in my head or is insomnia a side effect of Permax and Mirapex? How long does it usually take after being on a certain dosage for side effects to subside?
Also, I was prescribed 10 mg of Ambien to use on an "emergency" basis. My doctor said using it for even a couple of nights could cause me to be unable to fall asleep the following night, (although I just read otherwise on your Website). Can you clarify? Can I break the tablets in half so I won't be taking so much? How long can I take it at one time before "breaks" become necessary?
Finally, assuming I finally get a therapy which works, how long will it be before I feel rested and energetic during the day? I have been diagnosed for about six months, but think I could have had this disorder for as long as 15 years. Do we ever "catch up?"
Again, thank you for your time in answering questions. You're a lifesaver.
Insomnia can occur with both Permax and Mirapex, but it is not a common side effect. The only way to tell, is to stop then restart the medication and see if insomnia goes away then recurs. Usually within a few weeks the body will adjust to this side effect.
Ambien rarely will cause rebound insomnia (such as with Halcion). The lowest dose that works is the best, so certainly break the pill in half and see if that works (some patients do well with half of a 5 mg tablet). Although tolerance is unusual with Ambien, I suggest taking regular drug holidays (2 days off every 2 weeks), or even better, just use it intermittently (maximum 3-4 days per week).
Despite your 15 years of "sleep debt", with proper therapy you should feel normal in a few days.
Sent: Wednesday, August 25, 1999 10:31 PM
Subject: RLS leading to diagnosis of colon cancer.
I developed severe RLS symptoms about 2 years ago. After suffering with 2 to 3 hours sleep a night for about six months I went into see my primary care physician who did nothing constructive, muscle relaxants etc. After about another miserable five months I asked for an internal medical consult and in the resulting work up it was discovered that I was quite anemic - 9.0 gm Hgb, which apparently had triggered my RLS.
I had assumed that the tiredness I was experiencing was due to lack of sleep. Furthur tests showed that I had colorectal cancer and surgery and chemo followed and now one year after ending chemotherapy I am feeling great and hoping, but unfortunately still have quite severe RLS. I can control it by keeping quite active until midafternoon when I take 100 mg. Sinemet and then one hour before bedtime I take 125 mg. Sinemet and also clonazepam and at bedtime a 100 mg Sinemet CR. During the day I have found that a couple of Rolaids seems to reinforce the Sinemet. I am unable to nap during the day and wake before 6.00 am with twitches most mornings but basically my sleep at night is not bad.
Travelling is a bear! I spent most of a cross country flight in the rest room and am most apprehensive about a flight to Europe next year. Does anyone know if Percodan would help for an occasional fix while travelling. After my surgery I had five days of Percodan when the class IV narcotics were discontinued and I never had a twitch. Any suggestions would be most welcome.
On the positive side I do feel that the RLS led to my cancer diagnosis and quite possibly saved my life, but what a way to go. RLS sounds like such a dumb complaint - no pain and no outward symptoms - so what's the big deal. No one knows I have it except my family and physicians. Good luck with your research. I get great support from reading your website.
You will probably do much better switching from Sinemet to Mirapex. It works much better and does not cause augmentation and rebound which is extremely common with Sinemet. If your doctor gives you a hard time about this (as he will likely have no idea what Mirapex is, how to prescribe it, or why it is used in RLS), insist that he does this or sends you to a doctor (neurologist or sleep specialist) who can prescribe it for your RLS.
Xanax or Ambien are much better than Klonopin. Please remember to take regular drug holidays (2 days off every 2 weeks - Klonopin needs 7 days off the drug).
Percodan works great for RLS, but may be overkill. Tylenol # 3 or Vicodin are not controlled substance narcotics which should work quite well for occasional RLS not treated by the above medications. With Mirapex, you may not even need the narcotic medication.
Sent: Friday, August 27, 1999 10:12 PM
Subject: Restless leg syndrome and Zoloft for depression.
I have recently been diagnoses with depression. I have had RLS for several years in which I take Klonopin at night with much success. I started taking Zoloft 2 months ago which as dramatically increased my RLS with a lot more pain and discomfort. My doctor called a neurologist who specialized in RLS to ask if there is a better anti depressant to take that would not interfere with RLS and she said it would be trial and error.
I am tapering off of the Zoloft now but the thought of trying something new is scary to me since the first two weeks can be miserable. The new drug is Serzone. Then, the thought of trying something different again just plain scares me to death! Do you have any information or suggestions that I may try or present to my doctor. Oh by the way, the Zoloft did work for the depression.
Any antidepressant can worsen (or even make RLS better) RLS. There often is no rhyme or reason for these reactions, but once one class of antidepressant causes worsening of RLS, then the others will likely do the same. Therefore, it may be unwise to try Serzone, which is another SSRI, similar to Zoloft.
Wellbutrin and Remeron are very good antidepressants that are not SSRI's and have the least potential to worsen RLS, so these are the ones that we recommend.
Sent: Sunday, August 29, 1999 8:38 PM
Subject: Calcium Channel-blocker: Procardia XL
I have had both RLS and PLMD for many years. Thanks to the material on the Southern California RLS website and a local doc willing to use the information, I have achieved some relief.
There is, however, a nagging question in pharmacology that I have been unable to find the answer to. I have taken a calcium channel-blocker (Procardia XL) for many years. The RLS Foundation, Medical Bulletin, in its discussion of "Substances to Avoid," indicates that " . . . some calcium channel-blocking agents are dopamine antagonists, and their use in patients with RLS should be avoided.
I sense that Procardia XL does contribute to my RLS and PLMD symptoms, and also to my insomnia (independent of the RLS symptoms). My interest is in changing to another BP medication if Procardia XL is causally related to my RLS.
Can you tell me if Procardia XL (Pratt Pharmaceuticals, division of Pfizer) is a dopamine antagonist? If not, how could I find out? I've gone through PDR and I have tried local sources, with no luck so far.
Thank you so much,
I have read nothing that supports a dopamine antagonist role for calcium channel blockers in general or Procardia in specific. Cardizem (Diltiazem), is a calcium channel blocker that is recommended for RLS. Other hypertensive agents that may help RLS are Inderal (Propranolol) and Catapres (Clonidine).
Sent: Monday, August 30, 1999 12:54 PM
Subject: The correct dose of Permax for me.
For years I have suffered from RLS. After many trips to the sleep clinic and many medications that did not work, my specialist put me on 2 of the .05 mg tablets of Permax taken at dinner time. This gave small but insignificant relief.
Six weeks ago while discussing RLS with my family doctor I asked if Permax came in larger doses and if my level could be increased. Upon learning that it came in 0.25 mg tabs I requested same and within a day of starting, my RLS was totally eliminated.
It is still much better to increase Permax slowly. You do not know if 3 or 4 of the .05 mg tablets might not be sufficient to quell your RLS. Increasing Permax slowly also decreases the chances of getting side effects with this medication. You are very lucky not to have had this happen by suddenly starting such a high dose of the medication at once.
Now that you are doing well, you might not want to do anything, but it still might be worthwhile to see if you will do as well with a smaller dose.
Sent: Monday, August 30, 1999 2:12 PM
I am a 47 yr. old female and have been suffering with RLS for maybe 15 years. The past 10 years it has been getting worse. I tried taking Legatrim at night. This worked for a while but I got worried about taking this for a long length of time. I then went to a doctor who prescribed Sinemet and this has been working for a short period of time. I take Sinemet with lorazepam (Ativan) to have some relief at time.
I have also tried Permax, which I didn't like as much. The only problem I have found with any of the medicine is that if you miss the sleep mode (sleepiness) you can forget about getting any relief after that. I have also tried bathing in a hot bath with antiseptic and staying about 5 - 10 minutes. This sometimes gives relief.
I just can't understand that there has been no cure yet and what is the cause of RLS. Can someone answer this please. Sometimes I can't remember what medicine I took and at what time. I get a little worried about overdosing myself to get relief. At times I just get up and sit and cry. Crying doesn't help physically, but helps mentally.
Thanks for the support and knowing that I am not alone means a lot.
Be careful with taking Sinemet as over 85% patients will get rebound and augmentation when doses exceed 2-3 of the 25/100 mg tablets. Mirapex works much better and gives most RLS sufferers significant relief.
The cause of RLS is still unknown, but work is being done to figure this disease out.
Sent: Wednesday, September 01, 1999 1:55 PM
Subject: How quickly to increase Mirapex for RLS?
I am a 75 year old female. I believe I have had RLS most of my life, but dismissed it as I sat wrong or something like that. Two months ago I had hip replacement surgery (hip revision) and before that I was redecorating my house. The RLS started to get worse about that time. Because of the hip surgery I was taking Percocet and that helped a lot.
I have done a lot of research on the web about RLS and saw that one treatment for severe cases (I think mine is severe; I get it during the day with burning and twitching legs) was oxycodone (Percocet). I have been taking it and it mostly relieves the symptoms,but my primary physician and I would both prefer me not to use Percocet. I am starting on 0.125 mg of Mirapex 3 times a day for 7 days, then increase to 0.25 for 7 days then to 0.5 mg. (My physician had never heard of Mirapex so wasn't quite sure how much to prescribe. He is starting me on a low dose. The information on this web site was very helpful).
My question is: how long does it take for Mirapex to take effect. I am going crazy with lack of sleep (unless I use Percocet). I have also experienced weird sensations in my shoulders and arms. One night, my legs were fine, but I had to keep shrugging my shoulders and moving my arms. Sometimes I even exercise to an audio tape at 3:00 AM.
Thanks for having the web site and allowing the email.
Mirapex should work with the first dose (it usually kicks in 30-60 minutes). If the initial dose (best to start at .125 mg) does not work, we suggest that you increase it by 1/2 or one tablet every 5-7 days just as you have already planned to do with your physician.. The delay in increasing the dose is to prevent side effects from the medication.
You can increase up to 3-4 tablets before giving up on Mirapex.
Sent: Thursday, September 02, 1999 9:00 PM
Subject: Correct dose of hydrocodone?
An doctor on another RLS website posted a message about hydrocodone. He said he couldn't believe that people were afraid to take hydrocodone because in his practice (I think he works with a lot of headache sufferers) he has many patients who take it with no addiction problems. He really sang its praises as an excellent pain reliever.
My question is on dosage. He states that the best dosage is 7.5 mg to 20mg. Does that seem like a lot? I only take it to sleep at night and usually take 5 mg and then 2.5 mg a little later if I can tell my RLS symptoms are not calm enough to allow sleep. If he's right, should I be taking 7.5 or even 10mg (two tablets) at bedtime? I try to take only enough to relieve 95% of the symptoms. (I've been paying attention to you!) By the way, he never mentioned drug holidays although I do my best to take them.
I value your opinion and that's why I've bored you with this long letter!
You have been a good pupil and are doing exactly what you should be doing with hydrocodone (Vicodin,Lortab). The maximum for one dose is 10 mg and this should only be repeated if absolutely necessary at 4-6 hour intervals. Higher doses may not only lead to tolerance and addiction, but also to respiratory depression and other serious medical problems.
Many doctors are used to giving narcotics on a short term basis, in which case taking it several times per day (especially in a young, otherwise healthy patient) does not pose significant problems. Long term therapy is another story. Any physician who states that tolerance and addiction with potent narcotics are not a problem are either very lucky, have not been in practice long enough, or are just not aware that it has happened to their patients already.
I am extremely careful monitoring my patient's narcotic medications and very strongly advise them to use only enough to treat 95% of the symptoms and take regular drug holidays, but have had several who have gotten addicted. Most of these have gone to another physician to get a second source of the narcotic.
Stick with what you are doing and you should never have any problems.
Sent: Thursday, September 02, 1999 8:41 PM
Subject: We are not alone
I have had RLS since birth, as well as my Mom and my two sisters and my brother. I have the worst symptoms of all of us. I, as well as my sisters, are all on antidepressants, each of us different meds. My Zoloft can increase my RLS symptoms every time my meds are increased.
Recently, I have been diagnosed with a tumor just below my knee. It is about 3" in diameter, the size of a tennis ball. Of course my symptoms now are much worse. I am also worried that surgery on my leg is going to leave my RLS worse, then god forbid.
My boyfriend recently moved in with me, a very sound sleeper, is finding that he is sleepless with my tossing and turning and the twitches. I am unaware of when I actually do get some sleep. He is also adjusting to the naps in the midday that I need to make it through the day. He is great, he understands and sympathizes with me, but he has to put up with a lot. So I want to inform him more so he can understand when I tell him it feels like bug crawling in my legs.
Thanks for listening,
Zoloft is likely worsening your RLS. Wellbutrin or Remeron may be better choices.
You (and your boyfriend) would be much better off if you have your doctor treat you with Mirapex. It may solve all your RLS/PLMD related problems.
Sent: Friday, September 03, 1999 2:26 AM
Subject: Halcion and correct dose of Mirapex for RLS.
From reading an random article about 6 years ago I realized I had RLS. While visiting in Florida, I was led to a doctor who prescribed Sinemet. It worked wonders for a while, until augmentation set in. Then my internist, according to my request and showing him medical reports, prescribed Permax, and then Mirapex.
I'm taking two 0.25 Mirapex a day, one around 8;30 PM, another around 10PM and adding to this later one about 1/2 of a 0.25 Halcion. Again, I am having RLS earlier in the day whenever I relax, and rarely am able to sleep before midnight, having to get up and walk a few times. Should I increase my dosage? Should I start earlier in the day? What is a safe level of either Permax or Mirapex? I'd rather not add the Halcion, but without it I can't sleep even if my legs quiet down. Is it advisable to take a drug holiday from the above?
I've very much appreciated your research, the video and book, but would appreciate a few answers to the above. With thanks for your expertise and the time you spend on helping those of us who suffer from RLS.
Halcion is not one of my favorite sleeping pills. It tends to cause rebound insomnia, which may be why you can't sleep without now, even if your RLS is not a problem. Change to Xanax or Ambien, then make sure you take regular drug holidays. Even better (if your RLS is under control), just take the sleeping very intermittently.
Your dose of Mirapex is still low. The average patient (according to a few recent studies) needed between 0.25 and .625 mg per day (compared to your .5 mg/day). You can increase your Mirapex (under the direction of your own doctor) by .125 mg for the 10 P.M. dose each week until you reach a maximum of about .75 mg (you will likely not have to go that high). If you find that you are getting RLS symptoms earlier in the day when not sitting for long periods, then back off the Mirapex.
It is quite common to experience RLS during the daytime when sitting for prolonged periods. Just take .125 - .25 mg of Mirapex 30-60 minutes before this happens and you should be fine.
Sent: Friday, September 03, 1999 9:49 AM
Subject: A child with RLS
Hello, When my daughter was a child, she complained of symptoms related to RLS. The symptoms, however, disappeared. I have read nothing about children with RLS. Do you know of such cases?
RLS can occur during childhood and is probably much more common than most doctors realize. Many RLS sufferers tell us that they can trace their RLS to very young ages (even 3 or 4 years old). It is unusual for RLS to disappear completely, so your daughter may not have had RLS, or else she is very lucky (although it could crop up again at any time).
Sent: Saturday, September 04, 1999 11:23 AM
I've been on Mirapex for almost a year now, and it worked beautifully for a while. Then a new neurologist increased my dosage to up to 6 half tablets of 0.5 mg (I took only 2 or 3 half tablets). Lately I am having RLS in the morning, and often throughout the day, and, of course, when I go to bed.
Twice lately, when I knew I would be sitting for an hour or more, I took a whole .5 mg tablet beforehand to ward off the jitterbugs. Once was when I took a 2-hour auto trip and the other was for a manicure. Both times, even though my legs were still at the time I took the medication, within half an hour I was going crazy. I had a problem with rebound with Sinemet. Is this history repeating itself? Do we have enough research on Mirapex to know if it "rebounds"? I also find that pantyhose seem to aggravate my legs.
I am quite confounded as to why any doctor would want to increase the dose of your Mirapex when if was working well. He clearly does not believe in the old adage, "If it ain't broke, don't fix it". My only explanation for this is that when neurologists treat Parkinson's disease with Mirapex, they start low and automatically increase the dose.
My advice would be to see if you can taper of off Mirapex over a week or so and then stay off for about another week or two. You can use a narcotic to help you get over this period. Although rebound and augmentation are uncommon with Mirapex, who knows what transpired because of your unnecessarily high doses of the drug. When you restart Mirapex, keep the dose as low as possible to just control the RLS symptoms and you should do fine.
Sent: Saturday, September 04, 1999 12:24 PM
Subject: Menopausal sleep problems
For the first time in 4 years I feel halfway decent, because you suggested Requip last May, thank God.
Now my current question: I just read that menopausal women, normal ones, often have sleep problems, such as waking too early, etc. I think that in addition to RLS, my problem of being unable to go back to sleep at 3-4 am needs to be addressed.
I can't take Ambien for any length of time because my eyelids get very painful--the same reason Xanax and Lorazepam don't work for long either.
I do take 1 mg of Klonopin nightly, along of course with the Requip at bedtime and a smaller dose of Requip sometime before 4 am when my legs wake me up. (With me, Requip is usually good for 4-5 hours.)
My doctor here suggests a larger dose of Klonopin at bedtime, but having already experienced the horrible feeling of Klonopin overload a couple years ago, I just refuse to do that.
What about taking 1-2 mg of Valium to get back to sleep? Or should I suggest Vicodin--both of which I tolerate very well?
Or, I just read page 22, trying Wellbutrin or Remeron?
Thanks as always,
Klonopin, Xanax and Valium are all benzodiazepine sedatives and should not be taken together. They all act on the same receptors in the brain. You are likely somewhat tolerant to Klonopin and raising the dose will just cause side effects and make you tolerant of higher doses. Even Ambien should not be added to Klonopin.
Remeron and Wellbutrin are antidepressants and are not helpful for insomnia. Vicodin is a narcotic that should only be used for pain or RLS, but not for sleep.
You should look to non-prescription solutions for your insomnia. Melatonin may be a reasonable alternative. Check into proper sleep hygiene.
Sent: Monday, September 06, 1999 4:26 PM
Subject: PLMD AND SLEEP APNEA
I was diagnosed with PLMD in a sleep study about four years ago. In a sleep study done last week, I wa diagnosed with sleep apnea, which was not there in first sleep study. This study was required because I was snoring loudly (as per my wife) and was not relaxed despite taking Requip.
I took two .25 mg Requip at bedtime on the day of sleep study. It mostly controlled my PLMD until the last hour, when some PLMS was seen on charts. Because of that my sleep specialist told me to switch to Mirapex .25 mg. What is your opinion on this ? I thought both of these are identical drugs. Does Mirapex effect will last longer than Requip ?
I was given 10 mg of Ambien on that night by the nurse as I was not feeling sleepy with too many wires attached to the body. Now I am wondering if this can distort the results of sleep study, particularly related to sleep apnea. I am also wondering if there is any connection between PLMD and Sleep Apnea. I gained just 15 lbs. of extra weight in last four years (since my 1st sleep study). My doctor thinks that may be the cause for sleep apnea. He was still surprised to see the results. I am 5'-3" and weigh 145 lbs.
I know this is not a web site for sleep apnea. I think there may be other people with RLS/PLMD who also have sleep spnea. Some guidance and information on this subject will be helpful to all these people. My doctor is telling me to use C-Pap machine. Please tell me about any good web site on sleep apnea. I want to know what are all the alternatives.
The weight gain may be the cause of the new sleep apnea. There is no link at all between sleep apnea and RLS/PLMD. Snoring alone is not a great reason to do a sleep study. If you are sleepy during the daytime, then the sleep study may be helpful to find a treatable problem. Mild sleep apnea (you did not say what you apnea index or RDI was) most often does not need to be treated.
If you had very few PLMD until the last hour of the night, it does not sound as if you need a change in medication. Requip and Mirapex are very similar, but can have somewhat different effects, depending upon the individual. I only change from one to another if there is a problem with one drug, or the patients has continued complaints of RLS/PLMD on the drug.
Giving any sedative can cause an increase in sleep apnea. Some claim that Ambien does not cause any increase in sleep apnea, but this has not really been studied yet. I am not sure how reliable your sleep study was, and even so, without significant daytime sleepiness, I am not sure what I would do with the results.
Check out our links section for other sites on sleep apnea.
Sent: Monday, September 06, 1999 5:24 PM
Subject: another RLS sufferer!!
Hello, first let me say THANK YOU!! for this wonderful web site.. Like many other people I have read on your site, I have suffered with RLS, most of my adult life! I am a 52 year old female who first notice the creepy crawly feelings in my legs 25 years ago when I was pregnant with my first child! I watch the sun come up every morning for the entire 9 months!! It has never gone completely away, I have had it go into a remission for short periods of time, but it always returns!! I will not go into the details of how it feels, as I see all the symptoms listed time and time again through others!!
But I can tell you as the years go by, mine are either getting worse or I am losing patience in dealing with them! It is an every night deal, and I end up sleeping maybe if lucky 4 hrs. but most of the time 2-3 hrs.. and walk the house all night, so you can imagine just how rested I am.
As I look back over my life I really believe I have had this all my life in one form or another, I can remember as a child crying with my legs and having my mother rub them..I was not bothered in my teen years. but when I got married at 24, it did not take my husband long to tell me we had to have a king size bed.. as he could not sleep with me in a double bed, because I was so restless!!! Then at age 27 I was pregnant with my first daughter and the RLS became a daily part of my life! I remember when I was in labor and was given a caudal block and was dead from the waist down, I was still complaining about my legs, begging for someone to rub and move them! Then with my second delivery at age 31 my RLS was so bad, when I was dead from the waist down, that I was literally pulling my hair and was totally out of control, they finally had to end up giving me two sedatives to calm me down!!!
I have often tried to figure out away I could tie myself in a corner of a room and sleep standing up!!! Naturally when I would mention this to a doctor they would look at me very strange.. I always knew they thought I was just a bored housewife, or some such thing.. so of course I have never received any help with RLS, about 12 years ago, my regular doctor was out of town, and I had not slept in a week! and was really mentally and physically exhausted, so I went in to see another doctor within the same practice.
He actually KNEW about RLS, but also told me there was nothing that could be done, other than sleeping pills which he would not prescribe.. He did give me some non narcotic sleeping pills, but of course that did nothing!! So I gave up on talking to doctors until about 5 years ago. I mentioned it to my doctor (same one I had used all these years) and he told me the other doctor I had seen had told him about RLS and he prescribed diazepam..that did help for while but I knew they could be addictive, so I would only take them when I just felt I could not go another night without sleep! Now they no longer help!
I decided to change doctors as we had a new young woman doctor that had gone into practice in our small town.. But to my surprise she really does not seem to be too concerned about RLS.. but did put me on Zoloft after a stay in the hospital in March with flu/asthma attack.. I had not slept much in a week had been running high fever with flu, could not rest and then asthma attack, so to the hospital my husband took me. I walked the floor of the hospital all night long, the nurses thought I was a total nut case!! I tried to explain the RLS but they didn't seem to interested!
By the time my doctor made rounds the next morning I am pretty sure she was informed how strange I have acted all night! She put me on Zoloft! and hormones as I am going thru menopause.. well I have never wanted to take a mental medicine, but decided I needed something so I started the Zoloft.. at first I think it helped my legs, all though that is not why she had given it to me, I ask if if would help my legs, she said NO. While my legs settled down, I was now suffering from insomnia, but I thought OK. I will give this a few months, now after 6 months, I am slowly taking myself off Zoloft!! I don't like the way I feel, and it has now increased my RLS!
While I very much want an answer and a cure for this, I do NOT want to take mental meds!!and after reading all the messages from so many people who have RLS, the meds for this seem to be like riding a roller coaster.. one works for a while and then suddenly stops, and then you try another one!! I just can't see myself doing that for the rest of my life, to me that is worse than just dealing with it every day, I can't imagine the ups and downs, the withdrawal that some go through.
So now to my question.. If I am not willing to take these meds, what good will it do for me to seek medical advice?? I keep hoping something will help without all the side affects of these meds.
I am now talking Ginkgo Biloba (about 5 days now) and I honestly think its helping, I slept almost all night last night, but when I woke this morning, my legs were hurting and sore!! I spent the day shopping and walking a lot, and they finally stopped hurting..
I should tell you that my mother and her mother (my grandmother) also had this. My mother died at age 70 and had had two mental breakdowns in her life time and was taking a lot of mental meds! My grandmother is now 96 years old.. and the RLS has recently in the last couple years gone away!!! She has never taken any meds for RLS.. actually she had never taken a lot of any kinds of meds! and of course in her life time, I doubt many doctors knew about RLS!
If you can give me any advice that might help, I would greatly appreciate it!!!!
Thanks for listening to me!!
Your experiences are quite typical, especially for someone living in a small town without access to specialists who have expertise with RLS (it is difficult enough in large metropolitan areas with lots of specialists).
Get your doctor to prescribe Mirapex or Requip for you. If your doctor is not sure how to do this, just bring her a print out of our RLS Treatment Page. This should take care of most, if not all your RLS complaints.
Sent: Tuesday, September 07, 1999 1:18 PM
Subject: helpful hints
I have RLS, I think my mom does too, we both take two 200 mg of Advil every night, it helps us sleep. I have seen all the posts on here about meds and the awful suffering that people go through.
I read somewhere that mono and diglycerides, a food additive, can exacerbate RLS. I have been drinking general foods international coffees every day for about ten years, I love the stuff. I looked at the ingredients and low and behold there it was mono and diglycerides! also found in ice creams and coca, all the things I love to eat. so I cut these things out of my diet, and I have to say, I have begun to sleep again, I still feel a little stirring in my legs from time to time, but it isn't near as bad as it has been.
I have recently been under a lot of stress and that is now resolved. so I am just letting people know, that I have had success with a diet change. I am 34 female, my moms 58, and we both have had RLS for a long time and never knew what it was.
Sent: Sunday, August 29, 1999 2:45 PM
Subject: DOSAGES FOR NON-CHEMICAL THERAPY
My symptoms are similar to most, but not as severe as many. I am a 36 year old female who has had this problem for about 20 years. It does seem to get increasingly worse as I get older. I'm not uncomfortable during the day, although my legs sometimes feel as if they are very tired for no apparent reason.
My worst problem is about 20 min after I go to bed, just as I start to fall asleep my legs seem to wake up. It feels as like electricity is going through them. Getting up and walking every 20 min or so, stretching & exercising my legs has been my nightly routine. It doesn't solve the problem but it takes away the claustrophobic feeling while I'm moving. Once in a great while milk & crackers help to relieve it. Also, strangely enough I"ve even noticed if I skip my nightly spinach salads it gets worse!
It comes in spurts also. I wont have it for a month and then I'll have it for about 3 months. There is nothing I have noticed that I do differently in my routine to bring it on. Usually it lasts from about 11 pm to about 3-4 am. I have tried melatonin, but it just makes me even more tired while my legs won't allow me to sleep. I am interested in the non-chemical treatments suggested by others on the internet. Would you be able to tell me of an effective amount of calcium, magnesium, zinc, vitamin A & D, potassium, and iron that I could try? Should I try one at a time, or is some sort of combination best?
I was also wondering why quinine is not available or if it can be found in another form? I have been unsuccessful with my doctor in explaining my situation. He ordered some blood tests and told me what I didn't have as opposed to what I might have. I would like to try a more natural way of curing my problem before I go back and try to convince him that I need a prescription drug.
I would appreciate any suggestions you can offer. Thank you for your time and help in this matter.
Sincerely, N. Miller
Adding vitamins or minerals is a very hit or miss procedure. Iron should only be added if the serum ferritin is less than 45 mcg. Folate, B12 and the other vitamins are generally available in adequate amounts from multivitamins (Centrum for example). The fat soluble vitamins are not present in adequate amounts in multivitamins and need to be taken separately. I would only take these in the usual recommended amounts for non-RLS patients. The above treatments work for only a very small minority of RLS sufferers. Most with moderate to severe RLS need prescription medication.
Sent: Wednesday, September 08, 1999 4:33 PM
Subject: Muscle twitching and RLS
I have had muscle twitches, mostly in my calves, for a few years now. Some of my symptoms are similar to RLS but I don't have sleep problems. I am seeing a neurologist and have taken Sinemet and Neurontin, neither of which helped. The twitches occur when I am sitting or lying down but they happen during the day as well as night before I go to sleep. My neurologist originally diagnosed me with RLS but has since decided I do not have it since the drugs did not work. Stress does make the condition worse.
Your condition does not sound like RLS. Muscle twitches are actually fairly common and are not usually a feature of RLS. The key parts of the diagnosis of RLS include marked worsening of the limb discomfort at rest associated with an uncontrollable urge to move the affected limb to relieve the discomfort.
Sent: Wednesday, September 08, 1999 4:46 PM
Subject: Mirapex revisited
Hi, I am the 75 year old female who wrote on September 1, 1999. First, I can't say how grateful I am for your site and your responses. Many of the situations also had applied to me. It was encouraging to see that I am not the only one who couldn't find a physician who knew anything about RLS. My regular physician first referred me to a neurologist. She listened to my symptoms, did her neurological tests, discussed treatments with me a little (I told her I had been learning a lot on the Internet), said she wasn't going to give me a dopamine agonist (Mirapex) and prescribed Neurontin. Whew! I took prescribed dose of 600 mg that night. What a horrible night. My legs twitched but I was still very sleepy from the Neurontin. Very strange, wanting to go to sleep and having trouble staying awake but still unable to go to sleep because of RLS. Anyway, I didn't take any more for a couple of days, phoned her to see if we could discuss a different medication. She was extremely unhelpful and just told me to increase the dose if I was still having RLS. So I fired her. (As a side note, I told my psychiatrist about the Neurontin. She said she only knew of one person who took it and he (or she) gained 100 pounds.)
The Mirapex is quite miraculous. I started taking it a week ago today (1 September) and as you said, I got almost immediate relief. I have now had about 5 good nights sleep and feel much better. I think at this point I'll stay with the dose of 0.125 mg 3 times a day, instead of increasing it). I am still taking a little Percocet (usually 1/2 tablet) if the RLS symptoms get especially bad.
I forgot to mention I also take Zoloft for depression, atenolol and Hytrin for hypertension and I have been taking Xanax for a long time (originally for panic attacks which seem to go with the depression). My neurochemicals are really messed up but it seems as though at last, they are regulated correctly. I discussed switching from Zoloft to Wellbutrin but decided not to at this time. I don't know which is worse, depression or RLS.
Thanks again for taking the time to answer all the email. It is really really helpful!!!
Dorothy, Phoenix, AZ
It is gratifying to hear that you are doing so well. You might consider taking a milder narcotic (Darvocet, Tylenol # 2) if you need occasional touching up since the Mirapex is doing well.
You do not have to take the Mirapex 3 times a day as a routine. If you do not have RLS in the morning or when you are going to be active, you can skip at least one dose of Mirapex. You might also consider using a little more (1 1/2 to 2 tablets) before bed or other troublesome times if necessary.
Sent: Wednesday, September 08, 1999 9:12 PM
This note is for the person who identified PLMS with nocturnal myoclonus and asked about weird dreams. My doctor says I remember my dreams so vividly because I am constantly being waked up from them; I have a sleep arousal index of 18. I actually start dreaming BEFORE I fall asleep; in fact, if I go to bed before I'm actually sleepy, the way I can tell that I'm getting there is that my dreams from the morning before start flooding back.
In fact I've discovered real continuity and development in my dreams--I'm talking about dream cycles that develop over a period of weeks or even years. My REM onset, however, is normal. So I'm apparently dreaming long before REM sets in. I'm on Klonopin, which is addictive, but it isn't if you take it every other night as opposed to every night. Kava Kava acts similarly on muscle spasms and anxiety, but it takes about 1800 mg. to equal 1 mg. of Klonopin.
I suggest a dream journal, kept regularly during a cycle of significant dreams. Date the page, begin "In this dream" and write in the present tense, recording all the details you can recall. Do not analyze as you go. Analyze later, on a separate page, at your leisure, image by image or scene by scene, beginning "x means . . ." I've found that even if I have no idea what x means when I start the sentence, I usually figure it out before the end. THE DREAMING MIND IS A PUNNING MIND. These journals have been as helpful for me as psychotherapy. As for the RLS and PLMS, yoga--long and slow--has been the most helpful of the natural methods I've found to keep the disorder at bay. I do find, however, that intermittent exercise exacerbates the RLS; I need to exercise regularly for exercise to help.
Klonopin is a very long acting sedative. It has lots of active metabolites which can stay in the blood/body for a few days. Therefore, alternating days of using it may not avoid addiction as it would with most of the shorter acting sedatives. That is one of the reasons that we to do not advocate using Klonopin.
Sent: Thursday, September 09, 1999 7:07 AM
Subject: Sinemet Augmentation
My husband has suffered from RLS for at least the 12 years we've been married. He has been diagnosed with RLS & PLMD recently and had been given Sinemet 25/100 3 x a day. He has been on Sinemet for about 4 weeks. Two weeks into the therapy my husband said he felt his upper torso began to feel jittery and wired. We learned of the possibility of augmentation through your site which he felt was happening to him.
He called his sleep disorder doctor two weeks ago & said he thought it was augmenting and the doctor said he didn't think it was the Sinemet that was making him feel that way and to stay on Sinemet for another two weeks. (Also, in the course of the past 3 weeks, my husband has been treated for allergies, put on Allegra which totally aggravated his RLS, (it was only through this website that we learned antihistamines are a no no ) his allergist then put him on Zyrtec which the doctor felt will not aggravate his RLS. At this point we have no idea if it is the Zyrtec that is making him feel worse or if the Sinemet is actually augmenting. He stopped taking the antihistamine about 4 days ago and has stopped Sinemet 2 days ago. My husband says the pain in his upper body is so much worse than his original RLS symptoms which were only in his legs.
My husband would like to stop all meds for about 2 weeks and try an enzyme therapy which was suggested by my nutritionist but we now feel we have no alternative but to try another medication because the augmentation will not go away on its own.
My question to you is do you feel the Sinemet is augmenting and if it has will it eventually stop on its own so he has an opportunity to try the enzyme therapy or will the augmentation not go away on its own and he has no other alternative but to try another medication such as Permax or Mirapex.
Thanks so much for your time. This is so frustrating for the both of us. I am watching my husband turn into a hopeless zombie before my eyes and I am so worried about him I wish there was something I can do. Please advise as soon as possible.
Joy P., PA
It is quite likely that your husband is suffering from augmentation. The RLS sleep specialists almost never use Sinemet these days due to this problem and due to rebound. All the antihistamines seem to worsen RLS (especially in those susceptible to this problem), so have him stay away from them (including Zyrtec). Consider nasal steroid sprays (such as Nasonex, Rhinocort, Flonase, etc.) which will help the problem but not aggravate his RLS.
He can try enzyme therapy, but that is a real long shot (he has a better chance of winning the lottery). Get his sleep doctor to prescribe Mirapex or Requip and he will almost certainly be dramatically better in no time.
Sent: Friday, September 10, 1999 10:22 PM
Subject: Lupus?Sequential Compression?
Thank you for having this site.
I am a 40 year female with lupus. I have been on Neurontin, and started Sinemet yesterday, with some relief for my leg, but a very bad reaction ... nausea, dizziness, etc. But also- as it started to wear off - some very positive reaction to the Sinemet. (increased energy, alertness, etc.) I get some relief from leg splints (though living in Florida it's hard to wear all the time) I also walk 3 miles a day...and do stretching, hot baths, etc. - but this does not seem to help.
My doctor has prescribed a sequential compression device, which I think will help a lot. I believe this machine (which he told me is kept in emergency rooms) has sleeves for the legs, and then uses air compression to sort of massage the leg. Has anyone else tried the sequential compression? Anyone else also having RLS with systemic lupus or Lyme disease?
Some RLS patients get relief from binding their legs, but this is usually only temporary and doesn't work in most RLS sufferers. There is no known link to systemic lupus or Lyme disease.
You are lucky to have had an early bad reaction to Sinemet, as it can cause more trouble treating RLS than benefit. Have your doctor prescribe Mirapex according to our RLS Treatment Page .
Sent: Tuesday, September 14, 1999 6:28 AM
Subject: Diet and RLS
Apart from avoiding alcohol and caffeine, and ensuring that you don't have an iron deficiency, are there any other steps you can take diet-wise to minimize RLS symptoms?
Some years ago, my doctor at that time explained my restless legs as an overproduction of lactic acid which was naturally eliminated during activity but which became a problem during rest. Does this mean you should be careful about eating dairy products, or taking calcium supplements? Is there a connection? Does it matter what time of day you eat these foods - would morning be better than evening?
At night, when I am experiencing RLS symptoms, I usually have an acidic, nausea-type feeling. I often drink milk or eat yogurt to counteract this acid taste. Is this the lactic acid my previous doctor spoke of? Am I making things worse by consuming dairy products at night? I know I should take extra calcium for osteoporosis - but does this affect RLS?
My present doctor doesn't seem to know much about RLS, and had to look it up in her book. She prescribed the normal sleeping pills, but I really would rather manage the condition by changing my life style, rather than masking it with medication. I don't mind taking medications once in a while, in extreme circumstances, but not all the time.
Thanks for your help. Reading the letters on your website has really helped me.
Many RLS sufferers have noted that certain foods such as ice cream will worsen their RLS. This is difficult to understand and is extremely variable amongst RLS sufferers. Only individual trial and error will tell you what to avoid, if anything. Taking calcium should not affect RLS.
Date: Thursday, September 16, 1999 11:56 PM
Subject: Visible pulling of muscles in legs in RLS?
I have been diagnosed with RLS/PLMS. I can often actually SEE my legs being "pulled" - from the inside. In other words, it really does move, under the skin, pulling the skin inward. Is this a typical symptom of RLS?? Could it be something else??
Karen M. U.
I have never heard of that symptom, but we will see if any of our readers/RLS sufferers have had this problem.
A Reply from Karen U.
Friday, September 17, 1999 5:04 AM
Subject: Re: legs!
For more history, I have had a polysomnogram which showed a PLM index with arousal per hour of 11.70 and PLM index without arousal per hour of 69.30 for a total of 73 PLMS with arousal and 432 without arousal. I do seem to have all the symptoms of RLS that I have read about (e.g. urge/need to move legs, crawly feelings, etc.) But in addition, as I said, I can actually see the skin on my lower legs move. Really creepy.
I've tried ferrous sulfate supplements - ripped up my stomach (my ferritin level was 21). Permax - 4 of the .05 pills at bedtime, caused mental confusion, dizziness, etc. Had to stop taking. I take Neurontin at bedtime, which provides minimal relief. I'm just wondering if I may have an additional diagnosis other than RLS/PLMD?
I've seen neurologists, but never had tests other than standard neurological workup - been told they don't think there is "peripheral neuropathy". How could this, or other things, be ruled out? My symptoms did start as late teenager, but only with some discomfort in my feet. I am 58 now, and the problem is getting much worse I can mostly ignore symptoms in the day, unless forced to sit still - e.g., long plane ride. But, my sleep is very poor - I wake about every hour.
This visual movement that I see in my legs has only occurred in the past 6 months or so. Nothing in my life has changed - no medication differences, etc. I cannot tell you how much I would appreciate your help.
It does sound as if you have RLS. Have your physician prescribe Mirapex or Requip. It should take care of your problems.
The skin moving problem could be related to your RLS in some way (that I have not heard of yet) or may be some separate problem (less likely). See if the Mirapex solves that problem also, and let us know.
Sent: Friday, September 17, 1999 8:17 AM
Subject: Restless Leg Syndrome Treatment - Cramp Busters
I have found a treatment for RLS that works for me. I was so amused and skeptical at first, but the results were immediately. I have used this for two months now, and have had only two episodes of very minor RLS symptoms at nighttime, both at times when I was very tired. They are called Cramp Busters or at www.crampbusters.com.au. They were created by Pauline Buck, an occupational therapy, in Australia. They are promoted for cramps in the arms and legs, but Pauline has found they work for RLS, too.
At $25, I think that is a small price to pay for such blessed relief. Previously, I was taking 2, 3, and sometimes 4 aspirin a night and occasionally drinking tonic water containing quinine to relieve my symptoms. Cramp Busters are a godsend!
This appears to be a new device that is worn on the foot to prevent cramps and RLS. This device is completely new to us, but we will put this on our page for other RLS sufferers to see (we do not give our recommendation for this device, but simply are listing it as something that has worked for other RLS sufferers).
Sent: Sunday, September 19, 1999 7:58 PM
Subject: Spinal stenosis and RLS?
We want to know if anyone has ever been diagnosed with spinal narrowing and pinching of the spinal nerve, and had surgery to relieve the stenosis. My wife has a stenosis and has pain in her back as well as RLS. She now plans to have surgery to relive the pain, and is curious if the stenosis has anything to do with RLS.
Question is: Can a spinal stenosis cause RLS? My wife is a physician and is seeing the best neurologists in Seattle. There are no answers yet.
There is no known link with spinal stenosis and RLS. Trauma or surgery to the spine has triggered or worsened RLS, but that is the only relationship to your wife's problem
A Reply from Don T.
Sent: Monday, September 20, 1999 7:31 AM
Subject: Spinal stenosis surgery and RLS?
Thank you very much for your answer. Would you be kind enough to tell us if you know of any physician who specializes in RLS and any that have operated and had RLS develop s a result of the surgery? Along with their phone numbers? She would be willing to go to LA or other city for further examination and consultation. The surgery she plans is to relive pain that is probably caused by the stenosis. We would not want to make the RLS worse.
Thanks for your help.
Surgeons are oblivious to RLS, so calling them would not help. In addition a consultation with any RLS expert will not be helpful. If she needs the surgery, she should have it. There is a possibility that it could worsen the RLS, but it is impossible to know whether or not it will happen.
If there is worsening of her RLS, then there are many good medications to treat it, whereas there are no medications to treat spinal stenosis.
Sent: Monday, September 20, 1999 4:18 AM
Subject: New idea for treating RLS
Yep, I have a restless, 'energetic' feeling in my left ankle. Of course it keeps me awake for hours. But here's my 2 cents on the subject. There's no doubt medicinal drugs have their place in the world, but sometimes I wonder if they're just band-aids covering up a symptom of something deeper. What's the root cause?
I wonder- is the body trying to say something, you know, get a message across? Hopefully some ailments aren't random events- they may be how the body communicates with us saying something isn't quite right. Do drugs just cover up this communication that is similar in a way to bottling up ones feelings? I wonder...
O.K, here's my theory on what the body is saying re: some RLS type stuff: It's saying, there's a blockage due to a lack of outlet in a person's life. Something needs to be expressed in some way, but it's not, hence the 'madness of trying to escape from the leg'. Maybe physical exercise will do it, but maybe another outlet is needed? An outlet that a person loves perhaps? An emotional outlet? A release maybe...
I try and remember 'O.W.L' : 'Outlet With Love'. Some of mine are photography, acting and listening to wonderful music.
This is a theory I just put together and it works so far. Being at heart an introverted person, it's easy not to put attention on necessary outlets. And when I forget to give my body what it needs, that twitchy leg will start up again telling me 'hey, don't forget about me!'
Let me know if you have any success with OWL.
There are many medical conditions (high blood pressure, diabetes, high cholesterol, etc.) that we only treat with "medical Band-Aids" because we really have no clue as to what is the real problem/cause of the disorder. That is the state of the art for many different medical disease states even with the advances of modern medicine.
Your theory is probably as good as any other one we have right now, as the true cause of RLS is completely a mystery.
Sent: Monday, September 20, 1999 11:58 AM
Subject: Vitamin or mineral treatment for RLS
I have had RLS since I was a teen, but I didn't know that's what it was called, it was only this past year that I looked around in the library and found exactly what I experience. I hate it, it's awful and since I've gotten married, 2 years ago, it's gotten worse!! I asked my doctor about it and she had no idea.
I have tried stretching and massaging my legs just before bed and sometimes that helps, but most of the time it doesn't. Anytime I' ve taken any sleeping aids it only makes me feel stranger when my legs start jumping. I can't stand that awful feeling that lets me know "it's coming" many nights I end up in tears.
My question is, before I start trying some of these suggestions, besides talking again to my doctor, how long do the vitamins take to take effect, how long should I try calcium or magnesium or vitamin D, how about the Prozac ( I have some, I've been a little apprehensive about, for depression)
Any help is so appreciated, This Web site is wonderful! Thank you!
Kimberly J., Michigan
It is very understandable to want to try minerals or vitamins before going to prescription medicines. Unfortunately, these work only infrequently and only for a small minority of RLS sufferers. If you have a proven iron deficiency (ferritin level less than 45), folate or B12 deficiency, then adding these substances may be of benefit, otherwise, it is absolutely hit or miss.
Be careful of the antidepressants, as they may help or even worsen RLS. If your depression is due to RLS, then it might be better to go right to the RLS drugs. Mirapex/Requip works wonderfully for most RLS sufferers without significant side effects in most. You will feel like a new person.
A response from Kimberly J.
Sent: Tuesday, September 21, 1999 5:28 AM
Subject: Vitamin or mineral treatment for RLS
Thank you for your response. I did notice that the antidepressants were not favorable. I ended up just throwing them away. I do have a proven deficiency of iron, but I'm not sure how much. I also am low on calcium. Last night I stayed away from caffeine and took calcium at dinner time 1200 mg, I massaged my legs and slept like a baby.
The information on this page is incredible. I had take an allergy medicine Saturday and had the worse jumpy legs (I call it that). Sunday I had Ice Creme, and again... bad jumpy legs. THANK YOU SO MUCH FOR THIS PAGE!!
Also, I'm a coffee drinker. Yesterday I only had one cup and it didn't seem to bother me. I think I'll just keep reading this wonderful information and keep trying. If I still get jumpy legs, I'll call my doctor and get a prescription for the recommended drugs.
Sent: Tuesday, September 21, 1999 10:46 AM
Subject: What medications work well together for RLS?
I am taking care of a 92 year old man with severe RLS. He was diagnosed with Parkinson's and had a stroke 2 years ago. Nothing seems to make him comfortable. Right now this patient is taking 2.5 mg. in the afternoon and .5 mg. of Klonopin at bedtime. He sleeps during the day, but can't seem to sleep at night.
Would you suggest another drug to be used in conjunction with Klonopin to help this man with his comfort level ? I have read how others use Ultram in conjunction with Klonopin. His daughter is at a loss and I'm trying to help her out as much as I can.
Linda T. C., R.I.
It is quite expected that the Klonopin taken during the daytime would cause sleepiness in the daytime. As RLS is generally worse in the evening until the early morning, the Klonopin cannot help him at bedtime after sleeping all day.
I suggest that he get off all sedatives during the daytime and switch from Klonopin to Xanax. As he already has Parkinson's disease, Mirapex should take care of his RLS complaints and the Parkinson's disease.
Ultram can be added, but may cause some sedation, so it too is better at night.
Sent: Tuesday, September 21, 1999 11:38 AM
My husband has been on Mirapex for two weeks. He recently increased his dosage from one to two of the .125 mg tablets at bedtime in his second week. He still feels the RLS & PLMD symptoms, though definitely not as bad. Is it fair to expect these symptoms to completely stop once he is taking the correct amount of Mirapex.
Also, he is sleeping worse than ever. Is insomnia a side effect of Mirapex? Should he consider something to make him sleep?
Mirapex can sometimes be associated with insomnia or even sleepiness. He may want to try Requip instead and see if he still gets the same problem.
He can add a sleeping pill such as Ambien or Xanax on an intermittent basis (3 times per week) to help him sleep if necessary.
Your husband may need a slightly higher dose to achieve almost complete control of his RLS.
Sent: Tuesday, September 21, 1999 2:03 PM
Subject: Requip wearing off?
What is the upper limit on how much Requip one can take? Until recently, I was doing great on 8 .25 mg pills--4 at bedtime, 2 when those wore off 5 hrs or so later,and 2 if I wanted to take a nap during the day.
Now, I wake up the 1st time almost always after 4 hrs, take 2 more, wait the 45-60 minutes. for those to take effect--I get up and read-- and am awake after just 2-3 hrs. As a practical matter, I'm then awake for good at 4 or 5 am. Not fun.
Of lesser importance is that the daytime dose sometimes doesn't work at all.
Should I increase the 1st nighttime dose, slowly to 5? What about the 2nd nighttime dose? I feel I'm doing something wrong here; I take melatonin and Klonopin also and have for some time, not being able to substitute the Klonopin, as I explained before.
Thanks as always,
You can go higher on the Requip, but it might be a good idea to go off it for 5-7 days and see if you do well on your old dose when you restart. You can use Ultram or a narcotic (Vicodin) to hold you over in the meantime. If that is not possible, then a change for a few weeks to Permax can help as there is no cross tolerance.
It might also help if you use Ultram or a narcotic in the middle of the night when your RLS acts up instead of Mirapex.
Sent: Friday, September 24, 1999 2:47 PM
Subject: Crazy Legs
I call my RLS "Symphony Feet". When I was a child I would get restless legs and feet at the symphony. This TORTURED me and my parents, because they couldn't understand why I felt compelled to constantly move my feet. As an adult I frequently experience RLS during stressful times in life.
Exercising until I'm exhausted, good sex(!) and Kava Kava seem to relax my legs. (it doesn't always work) Every one thought I was crazy when I described this restlessness in my legs. I feel I have to flex my calves and scrunch my toes. I can't stop it sometimes and all I can do is cry. This keeps my partner awake in the process. My family doctors completely dismiss my complaints.
I was so happy to discover this Web site! I will certainly direct my Physician to this source. I recommend Kava Kava to those who would like to try something other than opiates etc...I sometimes works for me.
Kava Kava does seem to work for some mild RLS cases. If that doesn't work for you in the future, see if you can get your doctor to prescribe Mirapex or Requip.
Sent: Friday, September 24, 1999 10:53 PM
Subject: Do I have RLS?
I'm not sure if I have RLS or not. My legs don't involuntarily jump, but I definitely HAVE to bounce or wiggle them!!! What do you think? Here's my story:
I remember being three years old (am 39 now) and ABSOLUTELY needing to wiggle my legs and feet. My pinkie toes would drive me nuts, because they had this feeling I couldn't describe to my mom. So I would squeeze them and squeeze them, but get no relief. It was like I had/have this incredible amount of energy trapped in my legs, and subsequently in my feet as well. I have always had to wiggle my feet/legs at night to get to sleep. I only wiggle one at a time.
When I was little, it was wiggling and thumping. Now I seem to thump only when I'm having a really frustrating or frightening dream, or if I'm overly tired or stressed. Normally wiggling does the trick. If for some reason I can't sleep on my stomach and wiggle my feet to get to sleep, it can take me hours to fall asleep. Fortunately my husband has always been lulled to sleep by the wiggling. For the very first time, a couple of weeks ago, he went and slept on the couch because I was kicking my foot down onto the mattress really hard, which kept pulling the sheet and blanket off of him. It drove him nuts. I of course have no memory of it, but figure I was probably having a bad dream of some sort.
When I sit at the computer playing games or reading, I bounce my legs..both of them. It feels good...relaxing in a bizarre sort of way. My husband says it exhausts him to see me do it for an hour(s) at a time. I hardly even notice I'm doing it. My parents used to grab the top of my thigh to keep my legs still when we were in church. aaahhhhh I hated that. My mom and one of my sisters wiggle or shake their foot/feet too. When I was little and one of us was thumping, my parents would holler from their bed, "Whoever's thumping STOP IT!!!" So I learned to kick the Achilles tendon/heel area on my left foot, with my right foot..thereby getting the same relief but without the noise. If I'm overly tired or stressed, that's normally the type of thumping I still do... I know I've jumped around a lot (no pun intended), but I would like to know if this actually is my problem...RLS.
One of my five children bounces his leg when he sits still sometimes, but what I mostly have noticed is that he loves to bounce his head off the back of the car seat when we're driving. It makes me nuts to see that out of the corner of my eye. He's ten and has done it since he was a toddler. He also bounces his head on his pillow when he's sick, overly tired or stressed. What do you think?? HMMMM. I would love any input.
By the way, a friend who has known me most of my life, told me tonight that I NEEDED to go to your website. She thinks that's what I have. I've never felt like this was a problem....found a man who wasn't put off by it...so I doubt I'd even seek treatment...Just more curious than anything.
Thanks for letting me tell my story.
Sounds like you do have RLS. If you get a discomfort in your limbs, and makes you want to move your affected limb and this helps, then you have RLS.
Sent: Saturday, September 25, 1999 1:33 PM
Subject: Neurontin with Mirapex
You certainly are presenting an interesting pattern in the value of the various medications being used for RLS and PLMD! It seems to be more evident as time goes on that Mirapex is the choice for many of the cases. This has been substantiated by the survey just conducted at the Portland (OR) RLS Support Group. We had asked each member to list his or her present treatment and whether they were satisfied with results, partly satisfied, or not satisfied. They were also asked for what they had previously tried and why it was given up.
Of the 53 reports thus received, 13 members are taking Mirapex -- 10 are completely satisfied, 3 said "Somewhat", and there were no "No"s. And in my opinion the 3 "Somewhat"s could move to the "Satisfied" column by changing their routine only slightly. By the same token, 6 of the 8 taking Sinemet are only "Somewhat", and we have only 2 members satisfied with Klonopin (low dosages), while 9 members had used and dropped it. We have only 2 people using Requip, with mixed results but 4 others who tried it and dropped it (I note that Requip is getting mixed reviews from your viewers.)
Now to my case. I have said before that I have PLMD alone and have been taking Mirapex for over a year -- 0.5 mg at 9pm and 0.25 mg during the afternoon when I plan to rest or relax. The 9 pm time is that early because it takes me 3 hours for it to kick in and, because of that and the normal duration of Mirapex, it tends to wear off at say 3 am. If I wake up at that hour, my leg begins to jump. And I have been tired during most days.
In my message back in August, I had asked about, and you had commented, on Xanax, or Ambien, or Ultram as an add-on to help my sleeping pattern and thus to correct the day tiredness. On second thoughts I have been reluctant to try any of these because of the potential addiction problem. Then I ran across the fact that Neurontin has sometimes been effective, is non-addictive and has few side effects. It occurred to me that low doses of Neurontin would not only help the sleep pattern but, since it works on receptors much like the dopamine agonists (granted not the same receptors) it just might be a good bet.
My neurologist agreed it was worth a try, starting with 100mg one hour before bedtime and after a week to increase to 200 mg and later to 300mg if needed (that being the low starting dose for seizure problems). I have now reached the 200mg level, backed off to 100 while I did one other thing -- started taking another .25mg of Mirapex just as I go to bed to cover that 3am problem. Things have gotten steadily better but I am going back up to the 200mg of Neurontin as of tonight. What do you think of the theory behind all of this? Are there any other steps I should take?
Once again, I am so glad to see that you are recommending Mirapex over many of the other medications people are taking. It does seem like a good answer for many problems! Do you see any new cautions?
Newt in Oregon
Mirapex (and/or Requip) are the best of the current RLS medications. They help the highest percentage of patients (unfortunately, no RLS medication helps everyone) with the most amount of relief of any RLS medication.
Neurontin works for many RLS sufferers and is not a bad choice to add to Mirapex. Other possible ideas to help your problem would be as I suggested before to add a bedtime sedative or Ultram. Another thought is to add another dose of Mirapex at about 6-7 PM (which would kick in at 9-10 PM) then take a dose just before bedtime to help you get through the night. Talk it over with your neurologist, although often trial and error is needed to see which is the best answer for you.
Sent: Sunday, September 26, 1999 3:39 AM
Subject: Benzodiazepine Withdrawal
What could my elderly father take in order to get a little sleep at night while he slowly weans himself from oxaxepam over the next three weeks? Our local doctor would like to help, but he has no experience with RLS. I have, of course, read your web pages and Virginia Wilson's book.
Ambien may be a good choice. He could continue to take Ambien which is generally not an addictive drug.
Sent: Wednesday, May 19, 1999 1:59
AM Subject: RLS
I have just had a good browse through some of the letters and it's good to know that I'm not alone. I have suffered from RLS for many years. My mother and father also suffer from it. My Doctor mentioned RLS to me when I initially consulted him about this problem and he said there was not a lot he could do.He did try me on Quinine, but this didn't work.He also mentioned anti epileptic drugs, I said no to these. This condition can be the bane of my life and my husbands. I always seem to get RLS when we go out for a meal or to the cinema and it totally spoils everything. My husband and I have whittled down the triggers to my RLS
1/ extremely tired
2/ stress at work ie a lot to think about
3/ sub consciously worried about something
4/ needing to go to the bathroom ( in the middle of the night.)
If I start suffering in the evening I try and wait as long as possible before putting a hot bath on and having a soak before going to bed. This usually does the trick.
When overworked, my brain seems to go into overdrive when I want to go to sleep and this aggravates the RLS. I tend to keep a dictaphone by the bed so if there is something on my mind I can record it and forget about it.Worries, well there is not a lot I can do about that one except get whatever is worrying me off my chest by talking to someone. Certain times of the night my hubby will tell me to go to the bathroom. I don't even need to ask why anymore. I have found that by paying a visit even though I think I don't need to go does work. He says that my leg movements in the middle of the night are quite violent and he can't understand why I'm not even aware of them. Sometimes I am a little conscious of some movement but not all the time.
If anyone out there has any other tips of relieving RLS without drug intervention then I'd be truly happy to hear about them and I think my hubby would be even more grateful.
Leeds West, Yorkshire U.K.
Your RLS complaints are quite typical. Check out our RLS Treatment section, with the non-medication section. Unfortunately, most of these help only a minority of RLS sufferers, and generally only when the RLS is not severe.
When you are ready, there are very good treatments, of which Mirapex and Requip are the current best.
Sent: Monday, September 27, 1999 10:31 AM
Subject: Icy Hot for RLS.
I just found your web site today. I am relieved to know that so many other people understand and have experienced this condition. I am 29 and I have suffered with it my entire life. This condition bothers me the most when I go to bed. As soon as I lay down I began having to move my legs. It is as if something is in my legs making me move them.
The only thing I have found to give me any relief is the use of Icy Hot. The only thing is that it has a strong smell. Do you know if this treatment has worked for any others? My husband has not been able to understand my "having to move my legs." I am so glad you have posted others letters so he can read through them and hopefully have a better understanding of the condition.
We have posted the letters so that you and others will know that they are not alone. Icy Hot and other muscle pain treatments only work very occasionally for RLS sufferers, so it is very difficult to suggest another remedy. Trial and error is the only we to figure out what else will be effective and less smelly.
Sent: Tuesday, September 28, 1999 6:46 PM
Subject: RLS not better with Klonopin.
I am now 51 years old and have had RLS for as long as I can remember. Even as a child I remember holding my arms up in the air at night and stretching as hard as I could to try to get relief, but I did not know from what. My parents were not the sort that had time to listen to my minor complaints and so I said nothing. I actually said nothing to anyone but my husband for many years. I just thought this was in my mind and no one would believe me or understand.
I remember tossing the problem out to my gynecologist when I was pregnant, and getting this blank stare and thought again. I"M JUST NUTS! My RLS runs through my entire body at times. So bad at times I can hardly stand it. I work for a general surgeon who talked me into going to a neurologist that treats her for migraines. This was 1 year ago. I was given an Rx. for Klonopin, which I thought at first was a God send.
Now I know it was a temporary reprieve. ITS BACK AND WITH A FURY. I'm up to 2 1/2 pills per night. My presciption is for 45 pills so when I run out and I do, I'm a basket case until my refill is due. No exceptions. The guy who gave me the presciption won't allow additional pills. He doesn't want me to become addicted...TO LATE! I can hardly function, My body is numb. Even when the Klonopin takes affect I can still feel the slight tingle waiting like a monster for just the right chance to jump right back in. There is no way to describe how truly awful and disrupting RLS is.
You first need to start Mirapex, and once it becomes therapeutic, then taper off of Klonopin slowly (over 3-4 weeks). You may need Ambien to help get you off the Klonopin. The tolerance/addiction problems which are very common with Klonopin is why we never recommend this drug.
Sent: Wednesday, September 29, 1999 12:36 PM
Subject: Narcolepsy and RLS
My mother, age 80, had a laminectomy in March, knee replacement in June and a heart attack. She is recovering fairly well but is almost driven crazy with legs that twitch. I did read on your site that back surgery could have aggravated RLS. They twitch during the day as well as night.
She takes Ambien at night to help her sleep. She is seeing a neurologist in two weeks. She also has narcolepsy. Is RLS a symptom of narcolepsy? She is taking Ritalin, which does nothing for her as she still sleeps all the time. She has taken Ritalin for years. What do you recommend for that as well as the restless leg syndrome and does it sound like that?
Narcolepsy and RLS are not related at all. It is possible that Ritalin might aggravate RLS, but if your mother has been taking that for years without worsening of her RLS, it is likely not the problem.
Your mother should go on Mirapex or Requip for her RLS problem. It has an excellent chance of resolving her leg problem.
Sent: Thursday, September 30, 1999 5:11 PM
I have been suffering from RLS for several years but only recently has any doctor diagnosed this. I suffer at least 1 out of every 2 or 3 nights and I usually cannot get to sleep until 2 or 3 in the morning. I would like to know what kind of treatments would help me.
The kicker is that I would like to get pregnant and my doctor doesn't know of any medications that wouldn't cause side effects. Is there anything that you can recommend?
Mirapex would work well now. If you get pregnant, the RLS will very likely get much worse. Mirapex is not approved for pregnancy, but a sedative at bedtime such as Xanax may be very helpful to let you sleep.
Sent: Friday, October 01, 1999 12:32 PM
Subject: Permax vs. Mirapex
I am curious as to the exact reasoning for favoring Mirapex over Pergolide. Does it go beyond simple percentage of cases helped? My neurologist is reluctant to prescribe Mirapex because of the 'sleep attacks' it's become known for (though I am aware that is more likely to happen at higher doses). As I already suffer from moderate to severe insomnia for which I am currently taking Ambien as well as Sinemet for the RLS/PLMD, it seems that Pergolide would be my drug of choice to replace the Sinemet (due to increased daytime RLS, surprise, surprise). I just have to be careful of the nausea though the neurologist says if I can handle the Sinemet, I shouldn't have any problem with the Pergolide.
One of my acquaintances possibly had a 'sleep attack' with Pergolide. She passed out. Is this most likely to have been just a bad reaction or could it be similar to the Mirapex/Requip problem?
Also, my sleep clinic doctor disagrees with my neurologist and I'm turning to you as the ultimate source of all knowledge. My sleep doc says Sinemet CR lasts longer than the Pergolide while the neurologist says one dose of Pergolide before bedtime should take care of the RLS all day in all probability. From your treatment page, this last seems unlikely.
Thank you again for all your help now and in the past,
There are several issues that you have raised and I will answer them one at a time.
I prefer Mirapex over Requip for two reasons. Mirapex has less side effects and is generally much better tolerated than Permax. I have seen very few problems in general and almost no problems with daytime sleep attacks at the doses prescribed for RLS (the sleep attacks occur with doses greater than 1.5 mg, or 12 of the .125 mg tablets, and most of my patients are on 1-6 tablets per day). The second reason is that Mirapex works better at improving the RLS symptoms than Permax for most patients. As you can see, I am talking in generalities, and for many RLS sufferers, Permax may work much better and have less side effects. Often it takes trial and error to see which is the best choice, but I now start with Mirapex which increases my chances of success.
I have never heard of sleep attacks with Permax yet, and as it has been around much longer than Mirapex, it is very likely that if this were a problem, we would have heard about it already. In fact, I have had a few cases of increased insomnia with Permax. The problem that your acquaintance had may have been a strange reaction to Permax, or even more likely, not related to the drug at all.
Your last question concerns the duration of action of Permax. Although you have referred to me as the "ultimate source of all knowledge", I think it would be more correct to say that I am "one who is very knowledgeable in RLS". I am sure that there are others out there with even more RLS knowledge and experience than even I possess. Permax can last about 10-12 hours, but most find that it wears off in about 4-8 hours. That makes it longer lasting than regular Sinemet, but a little shorter acting than Sinemet CR. The only time that I write a prescription for a new patient for Sinemet is when I prescribe Sinemet CR so that they can sleep through the night.
The only way that the bedtime dose of Permax will last through the day is, if by getting off of Sinemet and thus resolving your rebound and augmentation problems, that the daytime RLS symptoms disappear.
Sent: Saturday, October 02, 1999 11:34 AM
Subject: RLS and sciatica or fibromyalgia?
Do many people with RLS also have the symptoms of fibromyalgia? Is sciatic pain also related to RLS. I seem to have all of these as well as the need to move my feet, usually by rotating my ankles.
Sciatic pain is very common, so there will naturally be a lot of patients who have both, but they are not related. There is thought to be a link between fibromyalgia (fibrositis, chronic fatigue syndrome, etc.) and RLS. This is not well understood, but we suspect that a significant proportion of fibromyalgia patients may have their problem due to the poor sleep from RLS/PLMD.
Sent: Saturday, October 02, 1999 2:02 PM
Subject: Do I have RLS?
I am a 30 year old female, very healthy. For the last couple of years, I have had a recurring problem (comes and goes in cycles) with the muscles in my legs. Almost exclusively at night, especially if I am very tired. Occasionally happens in the evening when I am sitting on the couch or riding in the car. Hard to describe--not painful really, but it is a sensation deep in my legs, especially the calves, and I am compelled to constantly tighten and flex my leg muscles over and over. Have to get up and walk around to make it go away.
Cutting down on soda and coffee seems to help, but I can't be sure as it comes and goes anyway. Could it be RLS? Any info is appreciated.
It it occurs fairly reproducibly when at rest, and especially when in bed and is relieved by walking, then it sounds like RLS.
Sent: Saturday, October 02, 1999 4:59 PM
Subject: RLS & Permax, side-effect dyskinesia
I have suffered RLS for 29 years, diagnosed about 10 years ago. Current most effective treatment is Permax (w/ Klonopin 1mg at night) . Since the Permax displaces my RLS symptoms to daytime also, I usually take 1/2 a .25 mg Permax at approx. 2 p.m., then a whole Permax at approx. 9 p.m.. I am usually awakened about 4-5 hour later and take another 1/2 Permax.
My main concern lately is that after 3-4 years on Permax, I have developed a very aggravating side-effect: a dyskinesia after any eating or drinking. My symptoms are that I cannot control moving or pushing my tongue against my teeth, until I somehow disrupt that dyskinesia by using ora-gel, a strong mouth wash, toothbrushing is often not enough alone.
I have tried an alternative to Permax, Neurontin, however it has no effect on the RLS. Does anyone have a solution or suggestion? Is anyone familiar with the problem? What do you do to control the dyskinesia? Any help or suggestions would be greatly appreciated.
Thanks, Chris P.,
I have not heard of that complaint before with Permax. We will see if others have had similar problems with Permax by posting your story on our web site. Your dose of Permax is significantly on the high side.
If your problems went away with Neurontin while you were off Permax, then you might consider a change to Mirapex or Requip to see if this will control your RLS and not cause any side effects.
Sent: Sunday, October 03, 1999 9:52 PM
Subject: Requip dosage
I am so grateful for your website. What a great service you provide to RLS sufferers! I wrote to you before but I'm still having problems with dosage and sleepless nights. Then I was using Mirapex and Restoril. Mirapex made my knees swell.
At present I"m taking 0.25 mg of Requip around 4-5 pm, 2 of the .25 mg of Requip 1 hour before bedtime, around 9-10 pm with 5 mg of Ambien. Many nights I take 1 more Requip around midnight. Doctors think my RLS case is severe. I had a mild case of polio when I was young and in the 1980's I was sent to a pain clinic for spinal injections to relieve my legs.
I don"t think my Requip dosage is strong enough but I don"t know how to regulate it. I don"t like to self medicate and my doctor has not hit on the right formula (he seems bewildered as to what to do next). I really need some help for late afternoons,evenings, and nights. Could you give any suggestions? My legs also ache, especially around the knees. I'm wondering if there is a place in my plan for Ultram or Tylenol #3.
I'm 63 and a very busy person. Sleep deprivation is a problem for me. If I talked to my doctor I'm sure he would increase my dosage. Any help would be greatly appreciated.
You can go higher on your Requip dose (with the consent of your doctor). The average patient needs 2-5 of the .25 mg tablets, and severe patients may even need to go up to about 10 or more tablets per day. Ultram or Tylenol # 3 may be helpful to control your RLS symptoms while you are adjusting your Requip.
Sent: Monday, October 04, 1999 1:11 PM
Subject: Side effects from Requip
I took your suggestion to use Vicodin in the middle of the night instead of another dose of Requip. This plan seems to be working pretty well.
Another problem just came up. I've been taking Requip since May and only lately have developed a stuffy nose and a postnasal drip that keeps me from falling asleep. Codeine cough syrup works, but I hate to take that every night for something that doesn't bother me at all during the day. But 30 minutes or so after taking 1.25 mg of Requip at night I develop symptoms that are bad enough to keep me awake..
For several years I've taken Vancanase AQ 84 mcg--3 puffs in each nostril in the morning; last night I had the idea of using it at night, right before taking the Requip. Big mistake, I think, because I kept waking up all night.
Are people reporting this problem, and if so what are they doing about it?
Thanks for your help,
The stuffy nose is a problem with Permax, but does not seem very prevalent with Mirapex Requip. Try stopping the Requip for a day or two, and if the symptoms go away, then come back with restarting Requip, then you have this side effect pinned down to the drug. You may do better with Mirapex.
It is surprising that Vancanase AQ (the maximum dose is actually 2 squirts each nostril daily) made the problem worse, but a dry spray, such as Vancanase Pockethaler may work out better for you.
A Reply from Anne G.
Sent: Wednesday, October 06, 1999 7:52 AM
If I do go from the Requip to Mirapex, do I taper off one and slowly build up the other, or can one just adjust to roughly the same dosage? If so, what is the correct equivalent amount?
I've gone to just 2 squirts of the Vancanase per day. As always, thank you, thank you.
You can do it either way. Requip .25 mg = Mirapex .125 mg. These are both the starting doses of each drug. Although they are generally equally potent, some patients may notice that for them, one may work better or worse.
Sent: Wednesday, October 06, 1999 7:41 AM
Subject: An observation about carbohydrates and RLS and a question
My wife was diagnosed with RLS about 2-3 years ago, although she now can recall decades of restless legs. After a disastrous treatment experience with Sinemet (augmentation) and panic attack, she has been pretty well maintained over the last year and a half with Permax and Neurontin.
About a month ago, I went on an extremely low carbohydrate diet for weight loss purposes. Being the good wife (and wanting to lose a few pounds), my wife went on it with me. In a day or two, her RLS symptoms increased dramatically. Her sleep pattern changed and she generally began to manifest symptoms throughout the day and particularly in the evening. She stopped the diet and went back to a normally balanced meal. Her RLS reverted to its moderate, controlled state.
Having done pharmaceutical research for many years, I know how anecdotal observations such as this may trigger new areas of research. Has there been any research into the impact of carbohydrates on RLS?
Another question: Have there been any reports on the use of SAM-e in treating RLS? On paper, at least, one would think that there might be benefit. The use in arthritis, fibromyalgia, depression, etc., all add up to something worth trying, but we hesitate to disturb the present balance.
Many patients have noted dietary effects on their RLS. Only a few have noted that carbohydrates (usually too much, not too little) have caused problems. Diet tends to be a personal phenomenon when it comes to RLS, which makes it very difficult to explain.
I have not heard of any reports yet about SAM-e for RLS.
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.
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