Patient letters on RLS symptoms and remedies- Page 50

Kicking RLS/PLMD Patient

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

Sent: Wednesday, September 24, 2003 7:40 AM

Subject: Does Neurontin dose need to be increased?

My husband has had RLS since he was a child (he is now 47). We have been married for 15 years and during the first 13 years or so he would be troubled by RLS only off and on. It was more of a nuisance because it didn't happen "real" frequently. About 2 years ago, he started getting restless legs EVERY night. For about 2 weeks he hardly got any sleep while

I tried to do some research about what we might be able to do about it. I read about calcium/magnesium and how that would help some people so he tried it and it WORKED! However, that was short lived. Within about 3 months he started getting symptoms again and each night he would complain that it was "the worst ever". He would almost be in tears and would talk of wanting to kill himself (not serious, but you probably know what I mean).

Well he finally went to the doctor and they prescribed Sinemet and told him to continue taking the calcium/magnesium. Wow! That was like a miracle drug for him. He slept so soundly and wasn't sleepy the next day etc. Well, after about 9 months or so, he started getting symptoms of RLS during the day while he was just sitting there trying to watch TV or whatever. I guess it was augmentation, so after about a week of this happening we went back to the doctor and he prescribed Neurontin (300 mg).

He takes one before bedtime and this worked even better than the Sinemet. He was so happy to have something that worked. Well he has been on this about 1 year and now he is getting RLS symptoms every night again. It has been every night for about 3 weeks now. He has found that it is somehow correlated with the bottom of his foot itching. He has to go outside and rub his foot on the concrete and cool off outside sometimes for an hour or so before he attempts to come back to bed. SOMETIMES that helps.

This is so frustrating for us because now we don't know what he should do. One time he tried taking 2 Neurontin and he got sick the next morning. Do you think increasing the dosage of Neurontin may help him? Maybe 1 1/2 pills (450 mg). Should he start taking it throughout the day maybe? Or do you think it is time to go back to the doctor to try ANOTHER medication? I feel so sorry for him as this problem seems to take over his life.

Thank you for any assistance you can provide us!

Medical Reply

Neurontin is a good RLS drug but it is very often limited because before adequate doses for RLS can be achieved side effects (such as your husband is experiencing) tends to intervene.

Ask your husband's doctor about adding Mirapex or Requip to his drug regimen and that will likely help his problem.

Sent: Wednesday, September 24, 2003 2:45 PM

Subject: RLS and anti-inflammatory therapy and iron?

Symptoms: RLS Syndrome - Creepy crawly pulling feeling causing me to have to flex muscles in legs (and sometimes arms and shoulders) when trying to rest or go to sleep.

I've had RLS for about 20 years now (off and on since I was pregnant with my 19yr old). Until the past two years it had been more off than on and not as intense. In the past two years, after finding out there was a name for the disorder I had, I tried all kinds of remedies and prescriptions. I even put a bar of soap at the food of my bed under my sheet ;) which is a folk remedy.

My doctor was never big on prescribing opiates even though they seemed to be the only thing that worked, so I felt hopeless. Recently I saw on a website several RLS sufferers mentioned different over the counter solutions. My RLS had been worsening by the day and my doctor was out of town so I ran out and bought all three of the items and miraculously I had almost immediate relief. It's still not gone but I am able to get off Ambien and back on Clonazepam for now. Here is a list of the items I bought at the drugstore:

Orudis - (12.5 mg. of ketoprofen)

Iron -Ferrous Gluconate (or Sulfate) (65mg - sometimes twice daily)

CitriCal (calcium supplement).

I don't know which one helped me so much but I saw my doctor today and he said that all these were fine (but to take ketoprofen with food). He thinks that probably the iron is doing the trick and to stay on it (I had been on iron at his recommendation before and it didn't seem to help that much- and my blood work doesn't show anemia).

I had never even heard of ketoprofen only ibuprofen etc., he said it is also an anti-inflammatory. I also recently heard that good sized doses of vitamin E have helped some RLS sufferers.

I hope and pray there is a cure soon so we can all get our lives back.

G. Ryan 46, Female

Medical Reply

I would recommend not taking Orudis as anti-inflammatory medications have no role in treating RLS and thus you will be taking a medication that may only cause harm. Iron pills may help RLS but you should have your serum ferritin level measured to check if you are actually low on iron. You should have your doctor check to make sure you do not get iron overload from your therapy (not common, but don't take chances).

Ambien is a much safer (but more expensive) drug than clonazepam and is a much better choice for RLS or insomnia.

Sent: Saturday, September 27, 2003 12:33 PM

Subject: Permax problem

I was just informed that Eli Lily no longer makes Permax in the .25 mg strength. Therefore they gave me (at my pharmacy) the .05 mg strength. I formerly took 1 .25 each day and now they have informed me that I need to take 2 and 1/2 tablets of the 0.5 which will cost me about $150 monthly whereas the .25 cost me about $50 per month. Is there any alternative that you can help me with.

Thank you,
Patricia F., Safford AZ

Medical Reply

Permax has helped many RLS sufferers but is no longer used very much. This is because the newer dopamine agonists, Mirapex and Requip (both are more expensive) work better with fewer side effects and Permax has been associated with (although rarely) valvular heart disease.

Since it will probably be about the same price or less now that the .25 mg Permax is no longer available, I would suggest that you see if your doctor can change you to one of the newer drugs.

Sent: Sunday, September 28, 2003 7:20 PM
Subject: Oral iron cures severe RLS?

I would love to hear your opinion about my RLS history. I am a 42 year old female who had periods of RLS occasionally starting maybe 10 years ago. Starting around 97 I started getting RLS symptoms maybe 30% of the time, and by 2002 I had severe RLS symptoms with severe insomnia pretty much every night, so I was up most nights kicking my legs, rocking my hips and flailing my arms in the air. My family doctor was no help when I went for treatment for insomnia/ nighttime agitation complaints early 2003, although at the time I didn't know my symptoms were RLS (and neither did my family doctor, neither one of us were very familiar with RLS).

One of the reasons I avoided seeking treatment for so many years is I thought the symptoms made me sound nutty and I was embarrassed. Finally, after surfing the internet regarding insomnia and finding this and other sites, I figured out this summer I had RLS and went to a sleep disorders clinic where I was diagnosed with RLS and started on Mirapex which was titrated up to 1 mg at bedtime. The Mirapex really helped my RLS although insomnia was still a significant problem.

The smart sleep specialist I went to also insisted on drawing my ferritin level, which came back in the 20s (I was mostly vegetarian for years and am female with regular menses ). When my ferritin level results came in (my hemoglobin and hematocrit were within normal limits), my sleep specialist doctor had me start Slow-Fe Iron Supplementation about 3 months ago with lunch and dinner.

One night a month ago I fell asleep before taking my bedtime Mirapex when my husband and I were in bed at 8pm and my husband didn't wake me, and for the first time in 4 years or so I slept the entire night without waking. Since that night a month ago I have stayed off the Mirapex and I sleep well most every night and my RLS symptoms are now minimal. All I am taking is Iron supplements! Have you heard of other cases like mine where very very severe RLS is almost completely cured by iron supplementation?

This is a miracle, I was a walking zombie from insomnia for years and now sleep well. I am very happy with the sleep disorders clinic I went to.

Medical Reply

We have heard of RLS cases doing very well with iron therapy, but unfortunately this does not occur often enough. The lower limit of ferritin at most labs is 10 while for RLS patients we like to see it above 45. It is very difficult to raise the iron/ferritin levels with oral iron supplements in most people due to poor tolerance of the drug and due to poor absorption. The absorption of iron can be improved by taking it one hour before meals with vitamin C (acid improves the absorption) but still most do not get much benefit from oral iron even when starting out with very low ferritin levels.

Intramuscular iron can be better but can be painful. Intravenous iron is the best (works very quickly and dramatically) but can be dangerous.

Sent: Monday, September 29, 2003 11:56 AM

Subject: RLS/Mitral Valve Prolapse

I am a 41 year old female with RLS... I have the RLS symptoms in my hip/spine area, unusual but just as terrible, I also have the symptoms on a daily basis all day long. I have taken Requip for almost 1 year now, with great results and no "heebie jeebies" as I call them.

A few months ago I began to notice what I thought to be side effects from the medicine. I was having very low blood pressure, feeling faint, a lot of fatigue in the day (sleeping great at night), pressure on my chest with shortness of breath, and sometimes a difficult time swallowing. After many tests I have just been told that I have a heart valve abnormality called Mitral Valve Prolapse.

Today I will be going in to receive a 24 hour heart monitor to keep track of the activity. I was told by the cardiologist that it appears to be benign, with no blood back-flowing, but still doing some test at this point. My major concern was that I read on a Mayo Clinic Research Web page about some patients that had never been diagnosed with MVP and now have and was also noted that they were all being prescribed Permax for Parkinson's disease/RLS.

I have since been switched over 1 week now to Sinemet, to see if some of the symptoms were also intensified due to the Requip also. I have also read that some people should not be on these medicines if they have an arrhythmia .......is this something I should get a second opinion on??

Thanks for any advice.....

Pam

Medical Reply

The concern about heart valve problems is only with Permax which is an ergot derivative. The ergots have been implicated in heart valve problems but we still do not have definitive proof that Permax causes this problem. Mirapex and Requip are not ergot related and thus are not associated with valvular damage. None of these drugs have anything to do with bothering cardiac arrhythmia (abnormal heartbeats).

Low blood pressure has been associated with all the dopamine agonists discussed above and your faint feeling and fatigue could be from the Requip. You should be able to tell if the symptoms disappear while off the drug.

Sinemet is a bad choice as it will cause augmentation and rebound with time. If you cannot take the dopamine agonists, consider alternative medications.

Sent: Wednesday, October 01, 2003 5:07 AM

Subject: Tolerance to Ultram or worsening RLS?

I have RLS pretty much 24 hours a day in my legs, arms, shoulders. I take Mirapex and Neurontin at night and Ultram alternating with Vicodin during the day. I can't take the Mirapex during the day because it puts me to sleep. I'm 50 years old. I've been on the same medication for years.

This past year, my doctor started alternating my pain meds. I asked her to because of what I read here. I take Ultram for 2 weeks and then 3 days of Vicodin. Here's my problem- I've always taken my Ultram at 10:30 in the morning. The past couple years my symptoms have started earlier so I now take it at 8:00 ( that's if I'm moving around). If I'm sitting at the computer I have to take it at 6:00 or I can't sit. Even then, I have a crawly sensation that's not unbearable but it is uncomfortable.

It concerns me because in the past if I took my dose of Ultram, that took care of any sensation at all. Do you think my RLS is getting worse or I'm I developing a tolerance to Ultram? The crawly sensation even after I've taken the Ultram has only started about 6 months ago. I'm very upset about this because I don't have any other options as to medication. I've tried all the Parkinson's disease drugs for my daytime RLS with no success. What should I do?

Thanks,
Mary P.

Medical Reply

I have not really seen much tolerance to Ultram with RLS. It is more likely that you are experiencing worsening of your RLS.

What I generally recommend when this happens is to use the narcotics more often and then use the Ultram as a drug holiday from them. If the Vicodin takes care of the problem then continue with it otherwise talk to your doctor about using methadone and alternating that with Ultram.

Sent: Wednesday, October 01, 2003 1:43 PM

Subject: RLS mainly while traveling

I know I have RLS, sometimes I get it in bed but over the past couple of years I have been getting it mainly while traveling either by car, train or airplane. Flying is the worst. The "tickling inside my bones" eventually actually creeps up into my arms. It makes me physically sick to my stomach and very irritable.

Some say vitamin B helps, also the herb Valerian but nothing has helped. I have a long flight coming up and I got some valium from my doctor. I hope that helps. Anyone got any suggestions. If I get up and walk around it goes away but the minute I sit down I start to go crazy with it again. I am 41 years old.

Thanks,
Anne P.

Medical Reply

For traveling, a Vicodin tablet or Ultram taken 30 to 60 minutes before should eliminate your tickling problems. Mirapex or Requip taken 1 hour before traveling would also work. You can talk to your doctor about trying these drugs and use the one that works the best with the least (usually no) side effects.

Sent: Wednesday, October 08, 2003 4:59 PM

Subject: RLS and Butcher's Broom?

My doctor prescribed Ativan ( 1mg.) for my restless legs and sleeplessness. It was working at first but now it is taking one and a half tablets to get me through the night with at least a few hours sleep. Is Ativan a good drug for this? What about Butcher's Broom? I am desperate for sleep!

Gordon C.

Medical Reply

Butcher's Broom is not an accepted remedy for RLS. A few RLS sufferers have gotten some relief from this remedy but the vast majority do not.

Ativan is good for mild RLS when taken on an intermittent basis. Taken daily, it is likely that tolerance will occur and you will need progressively larger doses.

Mirapex or Requip are the best drugs for RLS that occurs on a daily basis. Check with your doctor about trying one of these drugs for your RLS.

Sent: Thursday, October 09, 2003 9:26 AM

Subject: Permax Side Effects ?

Please give me your expert opinion on my med. problems. I have been on all of the RLS drugs and find that Permax is the most effective for me. (I have been on it for l year now.) I am worried about the side effects regarding the heart problems. Both Mirapex and Requip cause insomnia for me. What would your suggestion be for me.

I thank you in advance. Your advice is greatly appreciated,
Rosemarie (65) Canada

Medical Reply

The chances of Permax causes valvular heart problems are probably very remote but as this is a serious complication it should be considered and watched. There have only been a few cases reported and the link with Permax is not certain.

One must always weigh the risks and benefits before using any drugs (they all have some risk, even common drugs like aspirin are responsible for many deaths) and decide if the risks are not greater than the benefit. If you decide to continue on Permax then periodic echocardiograms would be reasonable to assure that no valvular problems are occurring.

Sent: Friday, October 10, 2003 1:06 PM

Subject: RLS

Just over a year ago, my wife was in an automobile accident. She suffered moderate head injuries including severe lacerations to the back of her head and a concussion that affected her for over six months. Several months ago I noticed the first symptoms of RLS which is the repetitive kicking of her legs at night.

Many nights I counted the leg jerks and noticed that they are constantly about 12 to 15 seconds apart and continue for most of the night or at least until I fall asleep. Now she complains of hip and joint pains whenever we take a car trip of more than 1/2 hour.

In your experience, could this be possibly linked to the car accident?

Any assistance will be greatly appreciated.

Thanks,

Gerry

Medical Reply

The leg jerks are PLMD (periodic limb movement disorder) which is related to RLS but different. Trauma can cause PLMD or RLS (although we do not know why).

Medications such as Mirapex or Requip taken at bedtime can be very helpful.

Sent: Wednesday, October 15, 2003 9:43 AM

Subject: Mirapex vs Neurontin

I am one of your RLS patients. I take .5mg Mirapex each evening and find it relieves my symptoms almost always. I am also on HRT. I read, and my OBG confirms, that Neurontin may relieve hot flashes. I have taken it in the past for RLS and it also does well for me. What would be the drawbacks to replacing Mirapex with Neurontin in an effort to get me off of HRT without experiencing the debilitating hot flashes? What are the side effects of Neurontin?

I am also concerned about the long-term effects of these medications. Will my body make less serotonin if I stay on the meds for a long period of time? does it get used to doing more with less and less?

Thanks for your help.

Louise J.

Medical Reply

There are no known long term side effects of either of those medications. Neurontin has been around much longer than Mirapex (about 5 years for Mirapex), so we may need more time to tell, but so far not much has hinted at long term trouble.

The main problem that I have with Neurontin is that it usually takes a higher dose to relieve RLS at which point side effects (most often drowsiness that may persist during much of the day) become the limiting factor. For RLS sufferers who do not have side effects from Neurontin, it is then a fine drug and can easily be used in place of Mirapex.

There should be no concerns about your body's ability to produce serotonin or levels of serotonin in your body while on Neurontin or Mirapex.

Sent: Wednesday, October 15, 2003 11:14 AM

Subject: RLS Treatment?

I'm a 52 year old female and I've been suffering with RLS all my life. I can remember having to kick my achy, creepy crawly legs as a little girl and my mother referred to the condition as "growing pains". I just found this page recently after typing" kicking legs at night" into my search bar. I was overjoyed to find that I wasn't alone and that there is a name for the condition! Tomorrow I will be seeing a neurologist for a work up.

My symptoms are always the same. I am either relaxing or just falling asleep when I feel a peculiar sensation in my shins and feet which is suddenly followed by a feeling that I can only describe as an electrical jolt zooming down from my knee through my shin into and under my foot. This happens over and over with 10 second attacks lasting for 2 to 6 hours. I usually don't get to sleep before 4 AM. It is an overwhelmingly uncomfortable sensation and like others, I kick my legs like crazy, run them under hot water, hit them ,walk, run, anything to try to get rid of the feeling.

I've tried muscle relaxers--no good. A point of interest--I recently had a kidney stone problem and was taking Percocet for pain. I HAD NO RLS WHILE ON PERCOCET. But if standing on my head and eating coconuts at bedtime is the answer, I'll do it. I'll let everyone know how I make out at the doctor's tomorrow.

Good luck to you all!
Tina

Medical Reply

Ask your doctor for Mirapex or Requip which should work well as a first line treatment. While you are titrating the dose up (as per my RLS Treatment Page) you can also ask your doctor for some Vicodin to give you relief immediately.

With proper treatment, your RLS should cause you any problems.

Sent: Wednesday, October 15, 2003 1:46 PM

Subject: Antihistamines and RLS

Last night was our support group for RLS. We had Dr. James Harrison as our guest. He is our advisor. He advised me to take two .25 mg. each Mirapex at night when I go to bed. I did that and it worked great. However, I have allergies and need an antihistamine. Are there any antihistamines that don't make RLS worse?? What woke me up last night was a clogged nose and sinus.

Thank you so much for your help.
Sallie S.

Medical Reply

The best way to treat nasal allergies in an RLS patient is with steroid nasal sprays (Nasonex, Flonase, Rhinocort, Nasacort, etc.) used on a daily basis. If an antihistamine is needed in addition, then you have a 50/50 chance of not worsening your RLS with the newer non-sedating antihistamines (Allegra, Claritin and Clarinex).

Sent: Saturday, October 18, 2003 1:37 PM

Subject: Estrogen & RLS

I was taken off of estrogen replacement therapy in Jan. due to a seizure and possible stroke. I have taken Dilaudid 2 mg (9 am and 3 pm) and Levorphanol 2 mg (9 pm) for several years for RLS. I noticed that my medicine worked much better and that I finally got myself off of most sleep medications since Jan.

I did not realize a connection until recently. I was put on Estrace vaginal cream for vaginal dryness. I now think that my bad nights are in proportion to how much Estrace that I use. Do you know if others have had this problem? Also, do you know of a similar product that might not bother my RLS?

Thank you,

Barbara/64/Oklahoma

Medical Reply

Many women notice that their RLS varies with their menstrual cycles and hormones. Sometimes it gets better with hormonal replacement for menopause and more often as in your case, it worsens.

The amounts of estrogen that get absorbed into the body from a vaginal cream are relatively small, but you must be very sensitive to this drug. I do not know of any other estrogen product that would give you the benefits that you seek without worsening your RLS.

Sent: Saturday, October 18, 2003 2:52 PM

Subject: Niacin For RLS

I've had RLS since I was about 39 or 40(I'm 57 now) and several years after I developed it, a friend suggested that I take Niacin. Before I go to bed, I take 100 - 400 mg of Niacin (not time-release) and that has almost totally controlled it for many years. I sometimes get it when I'm driving (I do a lot of long-distance driving) and then the only thing is to stop the car and walk around a bit.

I seem to be developing the same thing in my wrists/arms lately, but because it's easier to move them than it is to get up and walk around. It doesn't bother me as much. I have RA, and developed it at the same age, too. I do not want to go on any other meds for RLS, and take only Plaquenil for RA, but the Niacin seems to be working well.

Have you ever heard of anyone else using this? I've suggested it to several other people, and they all have had the same immediate results.

Laura H.

Medical Reply

I have not yet heard of niacin helping RLS. We will see if others have benefited from niacin after putting this information on our web site.

Sent: Monday, October 20, 2003 5:55 AM

Subject: insomnia from Mirapex

I take .065 Mirapex before bed with a 100 Trazadone and a .25 Xanax. In two hours I'm awake. Last night I took another of the Xanax and in 2 hours wide awake again. After reading your web page it sounds like Ambien would be a good next try. I'd like to take as much info to my doc as possible, Can you help?

Thanks
Jean

Medical Reply

Ambien would probably not work much better than Xanax. The benefits of Ambien is that it has a short half-life so that it does not cause daytime drowsiness and is not addictive like the benzodiazepines (Xanax) may be. It does not have much more ability to put you to sleep compared to the fast onset benzodiazepines.

Sent: Wednesday, October 22, 2003 5:49 PM

Subject: RLS worse with Klonopin and Sinemet?

I am a 56 year old female and have had RLS all my life. My mother had it but was never diagnosed, my daughter has it and now my 4 year old grandson has it. I can remember moving my legs back and forth as a child until I fell asleep. In 1978 it really set in but no one seemed to know what it was so I lived with it until 1985 when my family doctor prescribed Klonopin � mg. before bed. What a relief, I could finally sleep.

I have taken Klonopin since then and have had great success, but in the last year found that when I increased the dose to 1 mg. if my legs got really bad and continued with that dose for a few days my legs would ache the next day. When I dropped back down to � the aching would go away. Then the Klonopin seemed to gradually stop working. The other problem I had with the Klonopin was that I could not get health insurance or I had to go to �guaranteed issue� which was $900.00 a month.

I went back to my doctor and he took me off the Klonopin (weaning me off over a period of 3 weeks) and put me on Sinemet. At first it worked fine but as the last two months have gone by my RLS has gotten progressively worse and I keep taking more pills. I also feel very lethargic most of the time. I have tried Neurontin and had no luck. I guess I�m trying to figure out what my next course of action should be, my doctor is very receptive to whatever I want to do as a treatment. If you have any suggestions, they would be very appreciated.

Thank you and sleep well,
Susan

Medical Reply

Sinemet is well known to cause worsening of RLS with time (augmentation and rebound). Mirapex or Requip are much better choices and should take care of your RLS symptoms.

Sent: Friday, October 24, 2003 5:47 AM

Subject: RLS and Premarin/Hormone Replacement Therapy

I am 48 years old and had a total hysterectomy one year ago. The doctor put an estrogen patch on me and gave me Premarin for HRT (Hormone Replacement Therapy). As soon as I went home and quit using pain medication, I noticed my arms, legs, knees, ankles were crawling, driving me up a wall and I was unable to sleep at all.

After several attempts of finding out what the problem was I discovered it was RLS, my doctor is giving me Mirapex and Ambien and an anti-nausea medication. I have been continuing to take the Premarin. Then I read in some RLS literature from the Foundation that another women complained that she thought the Premarin was causing the RLS. I stopped using the Premarin a week ago without any real side effects.

I tried to cut back on the Mirapex I use 1.75 mg, three times a day. That's what it took to relieve my severe symptoms, but the RLS is too severe still. Do you have any information as to the truth that using HRT medication could be the cause of RLS and if after some time off of Premarin, that my RLS may go away.

our thoughts and advise would be greatly appreciated.

Medical Reply

We have several letters on our site about hormones (HRT in menopausal women mostly) worsening RLS. The reason why this occurs is a complete mystery. It does at times improve off the HRT.

One of the problems that you may be having (if you are still taking the anti-nausea medication that your doctor gave you) is that almost all anti-nausea medication worsens RLS. Stopping this medication or changing to an "RLS friendly" one may be very helpful.

Sent: Thursday, October 30, 2003 2:53 PM

Subject: pregnant with Severe PLMD, nothing seems to help

I was diagnosed with PLMD this summer, three months before I fell pregnant. I take Mirapex ( Pregnancy Class C) and tried to go off it after my neurologist found out I was pregnant and asked me to stop taking it. I could not stop though. Without Mirapex my PLMD is so severe that I wake up every two minutes all night long and get sick all the time and can not function at all.

My neurologist has stated that if I do not get enough sleep I risk having pre-mature labor. I am now 22 weeks along in my pregnancy and have to take 3.5 mg per night just to get a little relief. I sort of got by on .5 mg pre-pregnancy. This dose of 3.5 mg leaves me tired and nauseous and stuffs up my nose so bad (I can't sleep when my nose it totally stopped up) that I have to use OTC nose spray in addition to Flonase and nasal irrigation to be able to sleep.

My Neurologist does not like the idea of me taking so much Mirapex so he prescribed me Ambien ( Pregnancy Class B) 5-10 mg at night and advised me to back off on the Mirapex as much as possible. I've taken 10 mg Ambien for three nights now and at most it gives me three hours sleep. I guess I'm one of those people that is not really helped by Ambien.

My serum ferritin level is 20 that is up from 14 this summer. What other options are there for me? I am getting so little sleep that I can barley function during the day and I am catching every cold, flu, virus and bacterial illness that comes around. I've already needed one round of antibiotics this winter for a bacterial illness that I could not fight off. Most days I don't have the energy to shop or go out, even if it's to see my doctor.

Thank you,
Shawnee

Medical Reply

Pregnancy and RLS is always a very difficult situation, especially when the RLS is severe as in your case. For the most part, I concur with your neurologist in trying to keep the Mirapex as the lowest dose that helps but that is clearly not a great option for you right now.

The opioid (methadone, Vicodin, Percodan, etc.) class of drugs would probably give you the most relief and let you reduce the dose of Mirapex somewhat. None of these medications are class A or B for long term use. The decision to use them should be discussed with your doctors weighing the risks and benefits. This option has been used by several pregnant patients in the past but that of course does not ensure that there will be no ill effects on your fetus.

Sent: Friday, October 31, 2003 3:36 PM

Subject: RLS and Polio?

From reading your website I am absolutely amazed at the number of men who suffer from RLS. I am a 5th generation female sufferer and have had severe RLS for 50 years. I don't see movies or plays and could never sit through one of my children's concerts. I can't stand in line at Disneyland or even go shopping in the mall. I have discovered, however, that there may be a link between post polio syndrome and RLS.

I had paralytic polio when I was 16, within weeks of receiving the vaccine. The doctor's tell me this is why I was only paralyzed for 2 weeks as the vaccine did a partial job of protection. I am curious about the possibility of their being connected. The only pain killer I take for it is aspirin but I have developed bleeding ulcers and just underwent my 3rd blood transfusion. I did buy a Jacuzzi but the relief is temporary and sporadic.

I can't seem to find a doctor who has any sympathy or understanding.

Help!
Mari J.

Medical Reply

RLS is more or less equally distributed between men and women. There is no known link between polio or post polio syndrome and RLS but anything is possible.

You should not be suffering so much from RLS as there is very good treatment available that can relieve most if not all RLS symptoms in 98-99% of RLS patients.

Sent: Saturday, November 01, 2003 12:47 PM

Subject: Restless legs and trauma

You were so kind to give me some advice in the past and here I am again. I have had restless legs (and arms) quite bad for years. I have been taking Mirapex, 0.125 mg. I take a pill at 5 p.m., 8 p.m. and 2 at 10 p.m. I was doing reasonably well until my back starting bothering me and I found out I had spinal stenosis.

For about three months before surgery, I got only 2- 3 hours a night. I had surgery two weeks ago and all went well and I was not bothered at all with the RLS for a week and a half and now the demon is back. I have a hard time resting during the day because of the RLS and I am awake a lot at night with the RLS.

When I had pain and I was taking Vicodin, that seemed to help but I don't want to get hooked on Vicodin. The doctor I go to doesn't know much about RLS. I asked if he would give be Requip and he said there were too many side effects. Can you give me some advice as what to do?

Thanks,

Evelyn K.

Medical Reply

It is unfortunately common for trauma to the body and especially the back (surgery in your case) to worsen RLS. Sitting around a lot also worsens the situation. You may need a higher dose of Mirapex so speak to your doctor about increasing this medication until you get more active (you may even need double your present dose or more). Requip is very similar to Mirapex with a similar side effect profile and is no more dangerous.

For the short term Vicodin should not be a problem. You can even alternate it with Ultram to help avoid any concerns about dependence.

Sent: Monday, November 03, 2003 10:51 PM

Subject: aches and pains and burning with RLS?

I have severe RLS and was walking the floor all night long. I was on Klonopin for 10 yrs and then came the "augmentation. "Horrible is an understatement". I went to 8 different Drs who had no idea on how to treat it. My legs were black and blue from hitting and banging them to get relief.

I found and read an article about restless legs from the RLS Foundation of which I am now a member. Bless them for their help. I am now and have been on Mirapex for nearly 3 yrs. and so far it has been a lifesaver. I pray every night that it doesn't fail me. I would like to know what I can do to take the burning and aching away. I take100mg of Neurontin every night but all day long I get the burning and aching feet.

Thanks so much for being there,
Vicki

Medical Reply

About 20% or more of RLS sufferers have a neuropathy which likely accounts for your burning and aching feet. Speak to your doctor about increasing your Neurontin as higher doses may help this problem. The most common limiting factor of increasing the Neurontin dose is increased daytime sleepiness.

Sent: Wednesday, November 05, 2003 6:53 PM

Subject: Fosamax and niacin and RLS

On 10-18-03 Linda H. had a article on Niacin. It did not work for me, made the RLS real bad. I am a male, 63 years old and have had RLS for 10 years that I have been seeing a doctor for. Two month ago my family doctor wanted me to start taking Fosamax for Osteoporosis, 70 mg once a week and calcium 600 citrate + D two times a day.

Three days later my Neurontin quite working, took a week off the Fosamax and calcium . The Neurontin started helping me sleep again. Tried the Fosamax with calcium 600+d two time a day a week later, not any better. Don't know if this information will help anybody.

Thanks again,
Bill B.

Medical Reply

I have never heard of Fosamax interfering with Neurontin for RLS or RLS in general but I will put your letter on our website to see if others have noted this problem.

Sent: Thursday, November 06, 2003 2:42 PM

Subject: PLMS and celiac disease

Some months ago I wrote to you about my severe PLMS. I then discovered that I was very anemic (serum ferritin at 3). I am taking ferrous fumarate to try to restore my iron levels (now 15). Since then I have been only just diagnosed with wheat allergy, celiac disease and I am beginning to wonder if the PLMS could be a neurological effect caused by this and the malabsorption related to it.

I have read that there are frequently neurological effects with Celiac disease, notably ataxia . It has also been noted that a high number of epileptics have celiac disease. Should it therefore be routine for PLMS sufferers to be screened for celiac disease? Of course it is early days to tell if a gluten free diet will affect my PLMS but I will keep you posted for your information and the benefit of your readers.

Best wishes from Ireland,

David Mc D.

Medical Reply

PLMD (and RLS) are common enough problems that it would be expected to find other diseases occurring with it, such as your celiac disease. The incidence of celiac disease is no higher in RLS than it is in the general public. It would be very noticeable if a much less common disease like celiac disease was a cause of RLS.

Sent: Friday, November 07, 2003 6:05 PM

Subject: Amitriptyline (Elavil) and RLS?

A friend of mine has RLS and was prescribed Elavil by her Dr. Immediately she began to sleep and her RLS is under control. What are your thoughts on this drug in relation to RLS. I am always looking for something to come along to replace Mirapex which I have been on for 6-years that precipitated a 60 lb weight gain. I try everything and cannot lose weight.

Thank you in advance for your advice,
Bon S.

Medical Reply

Elavil will generally worsen RLS (probably about 60-80% will get much worse) but about 20% will not be affected at all and 10% get better. Why there is such a wide variation in response to this drug is not understood but as it worsens much more than it helps, it is not a drug that can be recommended for RLS.

For some patients with mild RLS, the sedating effect of Elavil may work as a sleeping pill and put the patient to sleep before worsening of RLS can occur. Weight gain is not generally a side effect of Mirapex.

Sent: Sunday, November 09, 2003 10:34 AM

Subject: Effects of surgery on RLS

Back in January I wrote that I was taking Sinemet and felt it was lessening its effects. In May I suffered a severe aorta dissection. I had complications and was in a coma for 8 weeks. All that time my legs jerked out of control. They did several different drug studies to try and correct this.

Finally a neurologist suggested Mirapex which he felt was the best medication for anyone with heart problems. I'm only taking .125 two times a day. In the beginning it helped totally. I had no symptoms. However, recently I've had some numbness in my feet which is particularly bad at night. Could I need a heavier dosage or take it more often? As usual I'm confused.

Retired teacher

Mary Ann/59

Medical Reply

The numbness of your feet may or may not be due to RLS. In any event, it is likely that increasing the Mirapex for numbness will not help that problem.

Sent: Monday, November 10, 2003 5:14 AM

Subject: chiropractic care and RLS

I would like to know if any studies have been done involving chiropractic care as a treatment option for RLS. I have been on the prescription merry go round for 4 years and would like to try some natural alternatives. All the medications work for a period of time and then we either increase the dosage or change the medication.

I don't want to waste my time if chiropractic care has little benefit. Just wondered if some of your patients had given it a shot.

Medical Reply

There have been no studies on chiropractic treatment and RLS but as many RLS patients have tried this therapy with little or no success, I can easily say that you should not waste your time or money pursuing it.

Sent: Monday, November 10, 2003 2:29 PM

Subject: Restless Legs in Alabama

I enjoy occasionally checking this web site for new and updated information. You had suggested to me to try the Parkinson's Disease medications. I'm not ruling that out, but the only reason I didn't was because I was told by my doctor that I would feel spacey during the day. I am in client relations and travel in a company car several days a week. Plus, I have to meet with customers; take them to lunch; , etc.

After Klonopin quit working--it had worked for five years, I took Neurontin and it didn't work. Then the doctor put me on Elavil. That was my experience in feeling spacey, plus the dry mouth was horrible. It really didn't work either--I still took Ibuprofen and a Xanax with it. I took myself off the Elavil and started taking four 200 mg. ibuprofens per night with a 1 mg. Xanax. My doctor is fine with it. THIS COMBINATION IS WORKING GREAT!!!

My family is afraid I'll get addicted to the Xanax, even though I tell them I don't take it to feel good. I take it and then I go to sleep. I've tried reducing the amt. of ibuprofen and tried doing a .50 Xanax. It's very ironic that it takes exactly what I'm taking to work. I hope this is an acceptable therapy because I really can't afford (with the kind of work I do) to take medication that alters my mental state. The Elavil definitely did and I was afraid the Parkinson's disease drugs would, too.

P.S. I saw a letter a woman had written about quinine. I am a social drinker and I find that when I drink a few vodka and tonics, I don't have to take any medication. Tonic water contains quinine. I have not tried drinking just straight tonic, but I heard of a lady that does every night and it has really helped her. Would like response about the ibuprofen/Xanax combination.

Thanks,
Sallie R.

Medical Reply

Ibuprofen does nothing for RLS so if it helps you then that is an unusual phenomenon for which I have no explanation. Xanax does work well and can lead to addiction and tolerance in a small percentage of users. This can be reduced by staying on the smallest dose possible and perhaps by taking drug holidays occasionally (perhaps 2 days off, once or twice a month).

Elavil is known to worsen RLS more than helping and is strongly associated with drowsiness problems. The Parkinson's disease medications are still the best. They are worth a trial as only a very small percentage of users have any mental side effects at the low doses used by RLS patients and if they do cause side effects, then you can stop them. At the very worst, they would give you another RLS medication to use for drug holidays from Xanax.

Quinine is great for leg cramps but has no real role for RLS. There are a few RLS sufferers who seem to benefit from quinine, but in general it does nothing for this problem.

A Reply from Sallie R.

Sent: Tuesday, November 11, 2003 7:01 AM

Subject: RE: Restless Legs in Alabama

I'll gradually get off the ibuprofen and see what happens. I'll also talk to my doctor about the Parkinson's disease medications to use on the drug holidays from Xanax. I gave my doctor a print out of the drugs and information associated with them I found on this site. He was very appreciative because he has a lot of patients who have RLS.

Medical Reply

Make sure that you do not go on Sinemet as it most often tends to worsen RLS with time. Mirapex or Requip are the best choices.

Sent: Thursday, November 13, 2003 11:47 PM

Subject: 20 year old son with RLS

I'm a 47 year old mother of 5 boys. My history of RLS sounds like many that I read on your site. I fought using narcotics for years, but finally broke down and found a good neurologist with a lot of knowledge about RLS. I've been on the same dose of MS Contin for 10 years.

Now, enters my son.... My son messed around with drugs and got hooked on heroin. He used it for six months. We took him to a rehab and we've had him home for two months (clean). The problem is that my son has the worst case of RLS I have ever seen. I thought I was bad, but my heart just aches to see him suffer. It goes around the clock. He may be a couple hours sleep if he completely knocks himself out with some major strong sleeping pill. During the day, he suffers and becomes anxious because of the legs, and now arms.

He's now talking about going to a methadone clinic because he can't take the leg problems. What do we do? I don't won't my boy on methadone. and I don't want him to be stuck with a long term opiate drug, (like my MS Contin). He's too young and immature to handle them without getting out of control. He's been on Mirapex for three weeks. It isn't helping.

My question is....will his RLS go away with time? Is this part of the healing process from the heroin, or is he basically stuck with this syndrome for the rest of his life. Did heroin bring this on prematurely? I know it's hereditary, but could the heroin mess up the ability to make natural opiods, which could cause the RLS??

Please help... Whenever I tell a doctor he's a former heroin addict they treat him like a second class citizen and tell him to take an aspirin and buck it up. (I forgot to mention...he hung himself last week, but was unsuccessful, ended up in hospital a week.). He said he couldn't stand it anymore and he didn't want to be a loser on heroin because he knew how bad it hurt his family.

Should he do the methadone program.. would slow acting MS Contin (like mine) be better, or will get get better because of his youth. My RLS didn't peak until my 30's.

Medical Reply

You have presented a very difficult case of RLS. Unfortunately, RLS that has a genetic cause and has an onset when young usually gets worse with time. There are exceptions, but that is what happens most commonly.

Severe RLS often does not respond to the Parkinson's disease medications as is the case with your son. Narcotic medication is often one of the few choices left. If nothing else works, then he will have to learn to use a narcotic chronically (methadone is probably one of the best choices considering his history) and not get into trouble with it.

Other choices would be to try the non-narcotic pain pill, Ultram, which has a very low addiction/tolerance problem. In addition, Neurontin or other seizure medication (such as Gabitril) may be helpful to keep the pain killer dose at a lower level.

Sent: Friday, November 14, 2003 3:37 AM

Subject: Relief for RLS

Let me introduce myself as a person afflicted by RLS. I have gone through lots of sites and read many documents on it. I have been suffering from RLS for about 7 to 8 years and have tried different methods to get relief from RLS. After a lot of trial & error methods I have found that certain postures in yoga and practicing pranayama has given a lot of relief to me which I would like to impart to those of you who are suffering from RLS.

As you all would be aware yoga is great for the mental and physical well being of a person. I have tried jogging & massaging with ayurvedic oils but could get relief only temporarily.

Medical Reply

Many different treatments exist for RLS and different exercises, stretches, etc. help for mild RLS, but not if at all for more severe RLS patients.

Sent: Friday, November 14, 2003 7:48 AM

Subject: Vitamins for RLS

I have had great success with a vitamin product called Bone-Up. It has calcium and magnesium in it. It is expensive, but worth it. You can find it on the Internet and in the vitamin section of some stores. I also take a high dose of iron and I take vitamin B supplements. I usually take the vitamins in the evening, and if the RLS flares up at all, it calms down shortly after I take the vitamins.

I am in my mid-40s, which is the age that many people tend to develop RLS, and recently I had a bad case of RLS and could barely sleep at night for months. I know how dreadful RLS is and I am happy the vitamins work. I recommend trying vitamins before trying any kind of prescription medication, since they are more natural and won't have the side effects that medication sometimes has. It worked for me and I am much happier now that I can sleep at night.

Medical Reply

Vitamins and minerals have helped some RLS sufferers, but unfortunately, most RLS sufferers only get minimal to no benefit from these pills.

Sent: Sunday, November 16, 2003 6:49 AM

Subject: 6 year old with PLMD

I am the mother of a young boy who was recently diagnosed with PLMD. Previous diagnosis have included Tourette's and ADHD. He is currently taking Trileptal 600mg/day. Tenex 3mg/day and Mirapex 1/2 of .125mg/night for 2 more nights and then going up to .125 for a while and steadily increasing for a week or so.

What are the possible negative affects of this medication cocktail on my young son and how soon should I expect to see improvements? What should improve first and is is possible that the sleep disorder is the cause of the mood and impulsivity issues?

Thanks,

SDN

Medical Reply

The improvement of PLMD with Mirapex should be immediate. We usually increase the dose slowly, but that is more to not cause side effects while letting the body get used to a given dose. So far, there are no really significant long term effects noted with this drug.

Trileptal is an anti-seizure drug that may help several movement disorders such as Tourette's syndrome or PLMD. There is little or no literature in its use for PLMD but other anti-seizure drugs are used extensively for RLS/PLMD. Tenex is a blood pressure medication that has been used in migraine and some other disorders. I do not know of any role for this drug in RLS/PLMD. There should be no significant interaction between the drugs.

It is always difficult to figure out if the sleep problem is the primary problem and the ADHD is merely a result of this sleep disorder. The only way to tell is to see what happens with specific treatment for one problem and see if it helps the other problems.

Sent: Tuesday, November 18, 2003 3:42 PM

Subject: RLS and hydrocodone?

I have RLS and have tried different medications over the last seven years. I have been taking Permax each night (approx. 40 mg.) which works most of the time. I recently had shoulder surgery and they gave me pain pills ( hydrocodone 5/500 - Vicodin) which I noticed worked well for RLS . I sleep very light and wake up frequently due to my very active mind and anxious nature.

I have found that if I take on third of a hydrocodone 5/500 tablet and only 15. mg. of Permax I not only have no RLS symptoms but I also go to bed very relaxed and sleep very sound. I wake up felling better than I have felt in many years.

Is this alright to do once or twice a week just to get really good sleep?

Medical Reply

Combining 2 different medications at lower doses is often a very good strategy for treating most diseases including RLS. Taking a small dose of a narcotic such as hydrocodone on a regular basis (even 5 out of 7 nights) has virtually no risk of addiction or tolerance.

Please check with your regular doctor before you make any changes in the way you take your medications.

Sent: Thursday, November 27, 2003 8:05 PM

Subject: Antidepressant medication and RLS?

I'm great fan of yours and thank you from the bottom of my heart for all of your dedication to those of us with RLS. I have read your letters for years and learned so much from them.

I am 66.......have extremely severe RLS for about 25 years. I am finally under rather good control after my doctor suggested Oxycontin to keep me from waking up after a few hours and taking more meds. I was afraid of this at first, but seem to be doing fine with it. I find that I am very depressed and even though I am taking 150 mg. of Wellbutrin once or twice a day, I still feel quite depressed at times. I'm wondering what you consider the best antidepressant for me to try that might not exacerbate my RLS. Zoloft did not help me very much in the past.

Thank you for your time and effort....
Connie

Medical Reply

In general, Wellbutrin, Serzone and Remeron are the "best" antidepressant medications for RLS as they affect the dopamine system the least. Other antidepressant medications usually worsen RLS but about 40% may not be affected or actually get better. Thus, it may take some trial and error to find the right medications for any individual.

As Wellbutrin has not seemed to cause any side effects you may want to discuss going to a higher daily dose with your physician.

Sent: Friday, November 28, 2003 5:06 AM

Subject: RLS in arms?

I have been reading letters on your website regarding RLS. I experience that feeling that people have mostly in my arms at night. I work shift work, and I have a hard enough time trying to sleep as it is. When I lay down at night, my arms start to have that feeling. Creepy crawly sensations. I feel like I am going crazy. It prevents me from seeping at night at all sometimes.

I do experience it in my legs occasionally, if it gets bad enough, but mostly in my arms. Can you help me diagnose this. Do I have RLS or something else. I have read all the letters, and few people experience this in their arms, its mostly in their legs.! Does RLS start in the arms first , and progressively gets to the legs? I need some relief, as I am too tired to function every day!! thank you , I look forward to your advice on this.

Medical Reply

RLS generally starts in the legs then may work its way into the arms, but anything is possible.

Sent: Friday, November 28, 2003 4:34 PM
Subject: Narcotic medication for RLS and addiction?

My RLS is very severe-I have it in my legs, arms, shoulders pretty much 24 hours a day. It used to start around 10:00am, now it starts around 6:00 am. I take 2 Ultram twice a day and a.125mg Mirapex and 2 300mg Neurontin at night. If I take any higher dose of Mirapex or Neurontin, I feel really tired and groggy the next day.

As my symptoms start earlier, I'm assuming it will probably get even worse (I am 51 years old). My question is - if I have to rely on pain medication 24 hours a day with enough doses to cover day and night instead of just night, how can you safely take enough to cover the 24 hour period. I forgot to mention I alternate Ultram with vicodin(2 weeks Ultram, 3 days Vicodin).

Is it possible to use methadone safely for someone with 24 hour a day RLS. Would it be safe to add another dose of Ultram a day?

Thank you,
Mary P.

Medical Reply

There is always a concern that taking narcotic medication on a daily basis will lead to addiction. With alternating the two pain killing medications it would be very difficult to have problems with Ultram or Vicodin. If you were to use methadone, then it would be instead of Vicodin and you should still alternate it with Ultram.

Your dose of Ultram is already reasonably high so you should try to keep it as low as possible but I usually treat my patients until over 95% of their RLS discomfort has be alleviated.

I generally alternate the narcotic medication and Ultram every 3-4 days but there is no hard and fast rule for this type of therapy.

Sent: Friday, November 28, 2003 8:50 PM

Subject: PLMD

I have had Periodic Leg Movement Syndrome since I was 19 or 20. I have been on Klonopin since I was 23 ( I am now 48). The Klonopin is very effective for me, my only complaint is I build up a tolerance about every 5 months and have to go off it for two weeks. The withdrawal symptoms get to the point around the second week that I can barley function as a normal person. I have to take at least a week out of work during each of these drug holidays.

Does anyone have any suggestions on what I can do to extend the time between holidays or how to reduce the withdrawal symptoms?

Sincerely,
Dennis B.

Medical Reply

Yes. Speak to your doctor about getting Mirapex or Requip which should be able to take care of your PLMD problem and avoid the Klonopin tolerance problem completely.

Sent: Saturday, November 29, 2003 9:51 AM

Subject: Changing Sinemet to Mirapex?

I've developed augmentation to Sinemet. My neurologist is RLS savvy. He gave me two bottles of Mirapex 0.25mg and suggested a tapering off of the Sinemet to Mirapex. For sleep he suggested starting with two of the Mirapex and two 25/100 Sinemet CR's at bed. Now he wasn't to specific about how much of each to increase and decrease, and what time period. He did caution about the upwards dosage. He said depending on success, I could go back on the Sinemet, or stay on the Mirapex.

Can you give me a suggested specific regime. How much to start with, when to and by how much to decrease the Sinemet, and how much Mirapex to increase and when.

I have also taken half a Mirapex around noon, and another half at suppertime, because the RLS was getting bad late afternoon and through evening. Now today I'm just going to go with the half at suppertime because it made a marked difference right from the start on the afternoon/evening RLS.

Can you also help me with this question? For me RLS presents two issues, the restless legs in the evening, and then the need to sleep at night. Now Sinemet worked like a charm for ten years, I took two 25/100 tabs at bed, when I got sleepy I'd pop another two 25/100 CR's and I got six to more hours good sleep, nearly all the time. Sinemet knocked me out. My question? Will Mirapex do the same?

Mirapex seems to have stopped the afternoon, evening RLS. But what will happen at bedtime. Will it knock me out, or will it stop the RLS so I can sleep, but NOT necessarily make me sleepy? The Sinemet made you yawn, feel sleepy, and then bang, your asleep. Last night a woke an hour after taking, and had to take a 25/100 tab, and then got six hours sleep. The first night, I woke 3 hours after taking, and took the Sinemet tablet, and it gave 5 or 6 hours.

Another question please? What do you have to say about headache. I know the Sinemet seemed to give me periodic headache on awakening, seemed centered in the neck and sometimes it was bad, and would linger for the day. I haven't had the headache with Sinemet for a while...but guess what, I've had the headache when wakening now, since using Mirapex.

I've only started the Mirapex for three days now....thanks,

Dave

Medical Reply

P.S. I have ADHD and take Concerta 54mg and a 15mg Dexedrine spansule in am and again in pm.

There is no right or wrong way to taper off Sinemet and start Mirapex. What I recommend to my patients is to start at the lowest Mirapex dose of .125 mg and work up (if needed) to the lowest dose that takes care of the RLS as the Sinemet is being decreased.

Once augmentation occurs with Sinemet, I would avoid that drug forever as the augmentation will quickly return.

Mirapex can cause sleepiness (like the Sinemet seems to be doing for you), insomnia or usually has no effect on sleep other than to eliminate the RLS which may have been preventing sleep in the first place.

Headache is not generally associated with Sinemet or Mirapex so it is difficult to comment of this aspect of your problem.

Sent: Saturday, November 29, 2003 12:44 PM

Subject: Topamax and RLS?

I just wanted to say thank you for your web site it has literally saved my life as I see it has done for so many others. I am on Sinemet and sin met cr. I also battle with depression and have been put on an anti-seizure medication called Topamax. I don't see any information on your website about this drug. What are your thoughts about this and will this help or make my RLS worse?

Very Grateful

Winnipeg, Canada

Medical Reply

Topamax may have some benefits similar to the other anti-seizure medications (Neurontin, Keppra, etc.). There are no published studies showing its benefits for RLS but anecdotal reports have revealed that some RLS may benefit from this drug.

A Reply from Winnipeg

Sent: Saturday, November 29, 2003 6:27 PM

Subject: Re: Topamax

Thank you so much for your quick response. I am currently taking one Sinemet CR 100/25 and one Sinemet 100/25 at bedtime. Occasionally I have to get up at about 5 am to take another Sinemet. I really try hard not to take more that 3 per day ever because of risk of augmentation. I have only been on these meds since August after I took your information to my doctor. I realized I have suffered with this disease since I was a very young child.

Sleep has always been elusive to me. Do RLS suffers also suffer with twitching eyelids? At various times you can actually see my eyelid moving back and forth very quickly. Do you think I risk augmentation with the dosages I am taking right now.

P. S. I can't sleep during the day unless I take a Sinemet, is this common?

Thank you so very much for your time and consideration.

Winnipeg, Canada

Medical Reply

he twitching eyelids likely have nothing to do with RLS. At a dose of 2 or more of the 25/100 Sinemet tablets per day augmentation is quite likely sooner or later. Mirapex or Requip work better than Sinemet without concerns about augmentation.

I am not sure why you would want to sleep during the daytime (unless you are a shift worker) and why Sinemet would help this problem unless it is alleviating RLS which is preventing sleep.

A Reply from Winnipeg

Sent: Saturday, November 29, 2003 7:25 PM

Subject: Re: Topamax

Are you saying that I should consult with my doctor and ask for Mirapex or Requip? If so I hope he will be open to this suggestion. As you know, not that many doctors are all that knowledgeable about RLS. There are times where I have not slept the night before and when I have tried to sleep in the afternoon my RLS starts as soon as I lay down.

I also experience RLS symptoms very early in the evening at times if I am sedentary for any length of time. The amount of Topamax I am taking is 25mg a day and will be increased up to 50 in two weeks and I have just started to take it. I really hope this won't make things worse. Any suggestions as to what I should do if my doctor doesn't want me to try the Mirapex or Requip.

Thank you again for all your kindness. It means a lot to me,

Winnipeg, Canada

Medical Reply

Most doctors have little or no knowledge about Mirapex or Requip unless they treat Parkinson's disease (mostly neurologists). If your doctor won't change to these newer better drugs then ask him to send you to a sleep specialist or neurologist who has enough expertise and familiarity with these drugs to prescribe them for your RLS.

The earlier onset of your RLS symptoms may be one of the first signs of augmentation occurring from your use of Sinemet.

The issue about sleepiness during the daytime with Mirapex and Requip generally occurs at doses greater than 1.5 mg per day (or 3 mg for Requip). It can happen with smaller doses but just as with older antihistamines, if you get this problem, then you just don't take them.

A Reply from Winnipeg

Sent: Thursday, December 04, 2003 9:03 AM

Subject: Re: Topamax

I went to see my doctor yesterday about Mirapex. He was concerned that I might fall asleep while driving because there is some sort of warning regarding this issue. He agreed to put me on Permax to see how that would work. I took it last night and after taking the 1/2 tablet the lowest dose I had to take another one because it wouldn't stop the tremors. Finally they stopped but I could not get to sleep even though I was really tired.

Do you know if Permax causes insomnia? I had to take a tranquilizer to get to sleep. The good news is I have got an appointment to see a Neurologist on December 10th 2003. Any advice as what to do about the sleeping problem until then?

Thank you

Winnipeg, Canada

Medical Reply

Permax is not used very much any longer for RLS. It tends to have too many side effects, of which includes insomnia. It is also associated with possible heart valve damage (likely a rare event), but patients on this drug should have regular echocardiograms.

Mirapex and Requip may also cause insomnia occasionally, but much less than Permax. It sounds like you would need higher doses of Permax which will certainly result in worsening insomnia, so Mirapex or Requip would be much better choices.

Sent: Monday, December 01, 2003 4:35 PM

Subject: What to tell my doctor?

I am 56 years old and have suffered from RLS for roughly 20 years. Over the last 10 years the condition has worsened and is so severe that I simply cannot function at night after 9 or 10pm without medication. I am a college professor and I commute 100 miles each day to work and back. Over the past 5 years my doctor has listened to my explanation of RLS and, after having me try Klonopin for a few months with little success, agreed to place me on a treatment program consisting of 0.5 mg of Mirapex and 1 extra-strength Vicodin (7.5 mg hydrocodone) each night.

It has worked very well overall, but I have never been able to adjust to the mild evening nausea and daytime drowsiness I feel. I often get especially drowsy while driving, and I'm in my car a lot. I have tried taking only the Mirapex for up to 10 days at a time, but the side effects remain and the RLS occasionally breaks through at night. I have tried taking only one extra-strength Vicodin at night without any Mirapex, and this does not produce any side effects. Unfortunately, the RLS still occurs roughly 50% of the evenings when I only take the Vicodin. When I take both, I am free of the RLS with certainty but still experience nausea and daytime drowsiness.

For the past few weeks I have tried reducing the Mirapex dose to .25 mg while increasing the Vicodin to 1.5 tablets at night (roughly 11 mg of hydrocodone). That combination has proven 100% effective at suppressing RLS with the bonus that I have not experienced any side effects of nausea or daytime drowsiness. It is remarkable how much better I have felt.

The problem I now face is explaining this situation to my doctor. He may feel the higher dosage of hydrocodone is excessive and potentially addictive, I just don't know. I have already tried a variety of other drugs, including Klonopin. These have not proven effective for me. I don't want to run the risk of having what has worked in the past for me suddenly taken away, yet I'd like to have my doctor aware of what works best in my case.

I realize the Vicodin issue may be a sensitive one for my doctor and for me in terms of long-term treatment, but the 1.5 extra strength Vicodin plus 0.25 mg Mirapex is what seems to work best. I never take opiates at any other time for any other reason, including root canals, back pain, etc. I only take it at night for relief of RLS. For that purpose it has been a miracle.

So, what do I do? Tell my doctor so he is aware of how my RLS is responding to this change in treatment, or just continue with what I've been doing over the past 5 years and live with the side effects? It seems honesty is the best policy, but I must tell you I am anxious that he might change my treatment altogether. I don't think I'm ready to begin fighting this battle all over again with a new set of drugs.

Thanks for any insight and advice you can provide,
Tom H.

Medical Reply

You should definitely tell your doctor what you are doing as soon as possible. Most doctors know that patients experiment with the dosages of drugs and if you are honest with him sooner rather than later, he should be fine with what you are doing. If it helps, you can tell him that what you are doing is very similar to what is done by one of the experts in RLS.

There are some alternatives to your treatment. Lortab 10 mg contains 10 mg of hydrocodone and less Tylenol (which does not help RLS so is not needed) than 1 1/2 Vicodin 7.5/750 tablets so would be a better choice. Even better (but requires a triplicate prescription in most states) is methadone 5-10 mg which contains no Tylenol.

It would be almost impossible to get addicted or tolerant to a narcotic taking it only once a day as you have been doing.

Sent: Wednesday, December 03, 2003 5:31 AM

Subject: Pain killers and RLS.

I've written to you before and I'm sorry to bother you again about the same subject but I am really scared. I have severe RLS 24/7 in my legs, arms, shoulders. I take Ultram 200mg a day for 2 weeks and then 3 days of Vicodin. I take Mirapex and Neurontin at night only, because they knock me out.

When I take Vicodin, it takes 50 mg a day to control the RLS. According to the treatment pages, you should only take 40mg a day. I'm on a fairly high dose of Ultram and I'm exceeding the recommended daily dose of Vicodin. I'm 51 years old. If the RLS gets worse as I get older, I'm worried about what I am going to do since I'm taking such high levels of pain killers already.

Could I be getting tolerant of pain killers in general? Have you ever had anyone being treated with these types of drugs get to the point where they just stopped working for them? Since I only take the Vicodin 6 days a month, I don't understand why the recommended dose isn't enough to control my RLS.

The only thing I can think of is a tolerance problem starting. That's why I'm so scared. I have no other alternatives to fall back on if I get to the point where I exceed all the daily recommended doses and if they quit working for me then.

Please tell me what I can do,

Mary P.

Medical Reply

Your problem is somewhat perplexing. It is unlikely that you are tolerant to Vicodin as you take it only 3 days every 2 weeks. It is possible that there can be some cross tolerance to Ultram which you take regularly (is the Ultram dose still working well?) but I have never seen that happen before.

Methadone may be a better choice for your narcotic RLS treatment. There is no Tylenol in methadone as there is in Vicodin and the methadone is a better drug for RLS. I cannot say why you need such a high dose of Vicodin to get relief from RLS. It is very rare to have patients who don't get relief from high doses of narcotics and I have never seen this happen to someone who is alternating their pain drugs and especially when the narcotic is used only a few days per month.

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

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

Click to go to the RLS Homepage, RLS Treatment Page