Patient letters on RLS symptoms and remedies- Page 11

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Date: Wed, 1 Apr 1998 15:01:05 -0600

I am presently trying to figure out why at 29 my legs hurt so bad that at times I feel as if I can't walk more than 1/4 to 1/2 mile without excruciating pain. I have all the common symptoms mentioned-leg pain, burning, twitching, discomfort, jerking, sleep disturbance, etc. I have been diagnosed with Sjogren's Disease and muscle discomfort is just one component of this illness. However, the Sjogren's leg pain withstanding, I now have the symptoms that RLS patients write of. The only thing I have not seen anyone with RLS mention is severe leg pain (again, not in the muscle as with my Sjogren's but running down the outside of my legs and down to the ankle and feet) and exercising. When my legs are restless I get up and move about a lot but I am not able to go for walks because after a short distance, I am almost unable to lift my legs.

Does anyone out there experience this as well or possibly I am experiencing a different type of illness than that of RLS?

I recently went to see a physio-something or other doctor (I can't recall the name) and have an EMG scheduled in 15 days. She mentions possible peripheral neuropathy and has put me on Neurontin (very small dose of 300 mg so that I may get used to the medication and will increase in another week) to help with pain. Nothing is working yet and my leg pain at times is almost unbearable.

I would love to hear from someone who also experiences the extreme discomfort when attempting to exercise. Or, if someone thinks that possibly RLS is not my problem.

Sheri W.

Medical Reply

Your description is compatible with RLS, but as you stated, the exercise pain is not characteristic of RLS. In fact, most RLS patients find that walking relieves their RLS symptoms.

The problem could be that you have one or more other medical conditions that are responsible for your other complaints that do not fit RLS. Neurontin is a good drug for RLS, but does not work on everyone. A trial of Permax, Xanax, or Vicodin would probably help you decide if you had RLS, depending on whether they helped or not.

Discuss the above with your doctor and perhaps you can figure out what to do about your problems. We will post your letter on our web site and see if others have had similar symptoms.

Date: Wed, 1 Apr 1998 15:28:01 -0500

I have been diagnosed with RLS. Currently my doctor is treating me for anemia, however, we both agree that low iron is the cause of mine. I have had it for at least five years. I am only 28. I tried Sinemet and had some bad reactions to it. So now I am using Clonazepam, two o.5mg tablets every evening, so far it seems to be working. I did not see that drug on your list. Is it not recommended for RLS?

My RLS was so bad that it seemed to interfere with my marriage, I could not sleep in the same bed with my husband. It is nice to know that I am not crazy, there are other people who have this. I really thought that there was something mentally wrong with me.

Thanks for the info.

Melissa Mashburn

Medical Reply

Clonazepam is the generic name for Klonopin which is the first sedative/benzodiazepine used to treat RLS/PLMD. It works very well, but does have a long half life, so that it may tend to cause more daytime sleepiness than others in its class. We prefer to use Xanax, which has a shorter duration and will usually not cause excessive daytime somnolence.

Sinemet is not always well tolerated. Permax, another Parkinson's disease medication drug, usually works better for RLS, although it too has its own side effects.

Date: Wed, 1 Apr 1998 23:04:47 EST
Subject: Message from L.

It has been some time since you last heard from me and I would again appreciate having your guidance. As background, I had done quite well on Ultram (50mg) three times each day and Clonazepam (1mg) once a day at bedtime. I have found that to relieve the pain I experience, I usually take up to 200 mg of Ultram daily. Every 6 weeks I have taken a drug holiday of 4 days. Over the past month or so I have generally woken after about an hour's sleep with pain, which tends to subside after a hot bath.

During my last drug holiday I used codeine as a replacement for Ultram and took nothing in place of the Clonazepam. While the codeine relieved the pain, I experienced some unpleasant side effects including some light-headedness and difficulty concentrating.

All in all my situation is tolerable but it is rare that I have an undisturbed good night's sleep. I have a number of questions and hope that you will once again be in a position to help:

1:I am scheduled to take another drug holiday in about a week and have been thinking of trying to do so without taking anything in place of the Ultram. I would appreciate your thoughts on this.

2: Do you know whether others suffering with RLS and using Ultram take some other medication during their drug holidays?

3: Someone with RLS recently mentioned that she had had some good results using a non-prescription food supplement named NADH, which apparently supports dopamine levels. Have you heard of this?

4: Do you think that 6 weeks is too long a period before taking a drug holiday and would you suggest a shorter period?

Thank you once again for taking time to provide your counsel.

Sincerely,
Leon J. K.

Medical Reply

Six weeks is a little long for drug holidays, but this is an individual thing. For Ultram, a drug holiday of 2 days every 3 weeks would probably be easier on you and even more effective to prevent tolerance and addiction.

You should do a drug holiday on only one drug at a time. This will also make it easier for you. The Klonopin needs a longer drug holiday than most of the other drugs. These should be 4-7 days. The symptoms that you are experiencing with your drug holiday may be due to Klonopin withdrawal.

I do not know anything about NADH.

A Reply from Leon K.

Date: Sun, 5 Apr 1998 03:56:49 EDT

Thanks for the information you sent. Could you please clarify a couple of matters.

While on a drug holiday from Ultram, would it be possible to take nothing in place of the Ultram for the two days and just take the Clonazepam. Otherwise, can you suggest something besides codeine in place of the Ultram for the two day drug holiday. Many thanks again for your prompt reply.

Regards,
Leon K

Medical Reply

You can always take nothing instead of the drug that you are trying to take a drug holiday from (in your case, the Ultram). For those who find it impossible to do so, we suggest a substitute which is similar, but hopefully chemically different and acts on different receptors in the brain. This is of course, the second best option.

Any narcotic can be used as a substitute. Other than codeine, Vicodin, Percodan, Methadone, and even Morphine can and have been used. Again, if possible and tolerated, no drugs of the same class, is always the best for your drug holidays.

Date: Thu, 2 Apr 1998 23:08:00 EST
Subject: RLS

After reading many of the letters on RLS I am feeling lucky that my symptoms are not as bad as some. I find that my legs are worse if I do a lot of vigorous exercise, however Yoga has proven beneficial. They are definitely worse during ovulation and menstruation which is when I end up on the sofa all night and usually wide awake.

I have found grape seed extract (which I get at Price Costco) to be very helpful. I take two to three per night and within fifteen to twenty minutes get relief. I also get up and rub my legs, exerting pressure and it helps a little as well. When they are really bad and I have been deprived of a good night sleep for three to four days I resort to prescription meds, but I try to limit myself. It is a constant battle and it is no fun!

Medical Reply

Thanks for your letter. You sound like you are very careful with your medications for RLS. I think there is little problem that you will have trouble with overuse of your RLS medications. You might want to take the RLS drugs a little more often so that you can get more relief and have a better life without discomfort.

Date: Fri, 3 Apr 1998 01:43:16 EST
Subject: Re: RLS

Thank you for your reply a couple of weeks ago. I had also decided to stop any new medications that I was given and that was Naldecon. Yes it helped. Now I am just back to the normal torture. Every night and some days. But usually getting relief from Sinemet. So I won't take any antihistamines. I purchased a saline nasal mist which helps drain the sinus. Can you tell me if you have also studied RLS being associated with Fibromyalgia?

I have had all-over pain for the past three years. Mostly my neck, head, spine, shoulders and lower back. Included in this has been depression,migraines and sinus problems. Things I had never had before. All of this came about in the past 3 years.

Can you tell me which sleeping aids are helpful with RLS (without making it worse) and won't cause drowsiness. I am an Electronics Tech and cannot afford to be groggy. They say that the sleeplessness can make everything worse.

Thank you
Carolyn S

Medical Reply

Many RLS sufferers seem to get worsening of their symptoms with antihistamines. Unfortunately, the over the counter sleeping aids are closely related to antihistamines, and therefor may cause the same increase in RLS symptoms that you had with Naldecon. My suggestion would be to use a prescription sleeping pill (when needed, or if on a regular basis, then with regular drug holidays) that is short acting, such as Ambien or Xanax.

There is an increase in RLS in patients with Fibromyalgia. It is not understood why, and the treatment is the same as in RLS without Fibromyalgia.

Subject: Question!
Date: Fri, 3 Apr 1998 17:48:41 -0800

Has anyone undergone major surgery who is severely handicapped with RLS?

I am about to undergo bilateral hip replacement surgery in several weeks -- while I am very optimistic about the outcome, I am extremely scared/worried that I cannot survive the two months recuperation without being medicated at all times. There is never a time that I can lie down without having restless legs or restless arms without being medicated.

I have been on Sinemet CR since 1990 and on Levodopa and Carbidopa 25/100 in conjunction (I use them together) for the past five years. As you know, oftentimes the medication will be of no help even though I have had no protein for 4 or 5 hours. This is the scary part! I would like someone to offer suggestions as to how to get through this!

My surgeon knows about my condition but I'm afraid I'm not being taken seriously. I feel that I require opiates (in addition to my regular medication) to get through the recuperation period after the surgery.

Please help me! Thank you in advance.
Joanrose K.

(submitted by Rania B., daughter of Joanrose K.)

Medical Reply

You have asked an interesting question. Most of the time RLS sufferers get their first real relief after undergoing surgery. It is at that time that they are given injections of narcotic (opiate) pain killers and experience life without RLS for the first time (assuming that they have been undiagnosed previously). The amount of pain medication given for the average post operative hip patient would generally be more than adequate to control RLS while the patient cannot take her oral RLS medications.

Doctors do like to reduce the pain medications quickly, as tolerated after a few days of post operative recovery, but in your mother's case this may be done more slowly, to avoid worsening of her RLS. Let the orthopedist know that your mother will need more than just Sinemet when she can take oral medications, as the immobility will exacerbate her RLS condition. It may be helpful to bring along information from our web site, or even this e-mail response.

A Reply from Rania B.

Date: Monday, April 20, 1998 5:13 PM
Subject: new drug

Do you know of any RLS sufferers who have had relief from their twitches with Neurontin? My mom's doctor has started her on 1800 mg./day split between am & pm (this is in addition to the Sinemet CR).

Not only does it not seem stop the twitches, but it makes her quite dizzy. I am rather worried about it, particularly since she is undergoing hip replacement surgery on Wednesday and I fear the Neurontin is not the answer....thank you in advance for any reply!

Rania B.

Medical Reply

Neurontin has been noted to help the twitches (PLMD) with RLS. 1800 mg is near the high end of Neurontin that is used on RLS sufferers. If she is doing well on this medication, then I would follow your mother's doctor's advice. If side effects persist, then changing the Neurontin to a nighttime sedative, such as Xanax or Ambien, may be helpful.

The upcoming surgery should not be a concern as I discussed in my previous note. The post operative pain medications should hold the RLS/PLMD at bay until she can take oral medications.

Date: Sat, 04 Apr 1998 18:02:16 -0800
Subject: Your RLS Site

I am a 38 year old male, walk about a mile a day, and lift weights (upper body only) about two or three times a week. I live in Ventura, CA.

Thanks for this site. I have been suffering from achy legs for about 6 months now. Always having to move and stretch them. The feeling of restlessness in my legs is sometimes enough to drive me crazy. Driving is intolerable after about 30 minutes. I get terrible pains behind my right knee cap, and my legs feel stiff and restless. I have been afraid to talk to people about it because it seemed so difficult to explain. I decided to do a search on "aching legs" on the internet, and I found your page.

The only thing that seems different than other letters I have read is that the leg problems do not keep me up at night. It is always worse in the evening while laying on the couch watching TV. When I first go to bed it is bad, but as I doze off in bed it seems to go away. After reading all of the letters here, I am convinced I share this RLS ailment.

Thank God I at least know what it is now.

Medical Reply

You are lucky that you have only mild RLS or you too might be up at night.   If your RLS does worsen with age (which is unfortunately not all that uncommon), then at least you know that there are treatments that can relieve your symptoms.

Date: Sun, 05 Apr 1998 14:12:41 -0700
Subject: Fibromyalgia and RLS

I haven't written for a while. I do experience severe RLS symptoms. I have had some relief with Xanax{just prescribed about a month ago}. I am also taking 50 mg. of Ultram a couple of hours before bedtime, which seems to help with the evening symptoms of "jumpiness". But, things seem to be getting worse. My bed partner says I am "running" in my sleep and I am waking up more and more. Also, the possibility of Fibromyalgia is going to be discussed with my neurologist this week. The migraines are worse and the body pain. Is there an association of RLS and Fibromyalgia? They just seem to tie in together.

Thanks,
Donna E.,
Jumping in Vt.

Medical Reply

There is indeed an association between RLS and Fibromyalgia. RLS does occur more frequently in patients with Fibromyalgia, but the reason for this association is not known. For more information, see our RLS Treatment Page and RLS Letters Page 10 (see the last series of letters to Terry)

Date: Monday, April 06, 1998 6:49 PM
Subject: Fwd: RLS, Re: Permax

My RLS was diagnosed in January, 1997. My sleep disorder doctor put me on Sinemet and I slept better than I could ever remember. It was a miracle. Unfortunately, augmentation and rebound began to make life hell after a few months. My RLS was much worse than it had ever been before I started taking any medications, so my doctor switched me to Permax. . . .working up to 0.05 mg twice daily. It worked pretty well (though not as well as Sinemet) for a while, but became less and less effective as time went on.

In December 1997 my doctor suggested I take a drug holiday for a while since I felt that my sleep wasn't much improved over what it had been before I started any kind of medications (averaging about 4 total hours off and on each night). Then comes the part that has me worried. When I began decreasing the doage (as one is supposed to do with Permax), I was getting less and less sleep. I became so exhausted that I gave up and went back to the usual dosage.

Last month I was again determined to do this "drug holiday" thing and found it absolutely impossible. I was getting no sleep whatsoever at night, I had to leave work one day because I just could not function (a first for me where RLS is concerned) and finally decided that for my survival I had to start taking Permax again. So now I find myself unable to get off a drug that affords me only about 4 hours intermittent sleep each night, yet if I don't take it I get zero sleep. This is a mess.

I've not taken much in the way of drugs throughout my life, but have never had trouble quitting them when required, so I don't know what's going on here. I have an appointment with my doctor next week. My question is;  has anyone else had the same experience with Permax and, if so, what did you do? Any information would be appreciated.

Medical Reply

Your dose of Permax is actually reasonably low. The odds are much better that your are NOT getting tolerant to Permax, but rather that your RLS is getting worse (which unfortunately is not that uncommon as RLS sufferers get older). There is no need for a drug holiday from Permax.

You likely need more Permax, and by trying to taper off the Permax, you just provided less than adequate treatment for your RLS. My suggestion would be to slowly (you can add 1/2 of the .05 tablets to each dose) increase the Permax until your RLS symptoms are such that you can sleep the night through. Some RLS sufferers do need a second dose of Permax in the middle of the night (3-6 hours after the bedtime dose) so that they can sleep later in the morning.

Subject: R.L.S.
Date: Sat, 4 Apr 1998 23:08:38 -0500

Thank you, thank you. For years I have gone from my doctor to my doctor only to be dismissed as a silly woman!! While at the my doctor one day (my husband, Bill, was with me), Bill mentioned how during sleep my legs kept moving and I stopped breathing. I was sent to the sleep clinic and was diagnosed with sleep apnea and R.L.S.

I have been on different medications, but after a few months symptoms return. For the past year I have been taking Neurontin and Elavil. This has worked well until three nights ago. I will take the information I downloaded to my doctor this week.

Sally

Medical Reply

I hope our information helps you and your doctor to relieve your RLS symptoms. Elavil may worsen RLS, so you might want to discuss that with your doctor

A Reply from Sally

Date: Wed, 8 Apr 1998 20:04:56 -0400

I called my doctor today to ask about discontinuing Elavil and starting Xanax, I was told Xanax is addictive and he felt he could not prescribe this. I cannot get an appointment until 22nd of April. My doctor is on vacation and an associate of his gave the above message but he did say I could increase Neurontin to twice a day. Is there any other medication which is not addictive? I presently take 300mg of Neurontin.

Thanks,
Sally

Medical Reply

Neurontin is not addictive and increasing the dose would be reasonable. The Parkinson's disease drugs (Permax, Mirapex) are also very effective and not addictive. Xanax can be addictive, but if used carefully (only as much as needed to relieve RLS) and drug holidays taken every two weeks (for one weekend), addiction should be unusual. Many doctors are afraid to prescribe this class of medication, but there is no good reason to withhold Xanax (if it is necessary) when treating RLS, if the above guidelines are followed.

Date: Thu, 9 Apr 1998 01:26:00 EDT
Subject: RLS

My story is not unlike many of the others. I was diagnosed with Restless Leg Syndrome about 8 months ago, and my doctor suggested I take Sinemet which worked like a miracle for about 2 months. When my symptoms returned and I was no longer able to sleep he suggested that I take 5mg of Valium along with the Sinemet. And for a while that helped but then again my symptoms returned worse than ever.

I was absolutely miserable!  No sleep at all for about 2 weeks straight. He then prescribed Tofranil. I took it each night but with no relief. I found that the only relief I could get was to rub my feet on something very hard, and when I was lying down, to press a tennis ball very hard into the area that seemed the most affected. This actually did help quite a bit, but it was of course short term.

I was listening to a radio talk show one morning and heard the host say that he drank about 16 to 20 glasses of water a day, and that he never had a headache, a cold, or any symptoms of any kind for as far back as he could remember. That he was always well, and always felt great. Since I was nearly crazy from lack of sleep. I decided I would try just about anything. I decided on my own to slowly go off of all of the medicines. I started drinking water, lots, and lots of water. I am not up to 16 glasses yet, probably more like 7 to 9 right now. And of course I am practically living in the bathroom, but the really great thing is that it is working!!! I am now sleeping!! I don't know what it is, but I am sleeping through the night and no more restless legs!!

This was the only change I made in my life. I hope others will try this and get relief. I don't know how long this will last, but for now I feel wonderful. It was very hard to get started drinking that much water, because I was not accustomed to drinking more than maybe one or two glasses a day, but believe me, I have made this a new habit in my life. I sincerely hope that this will help someone else.

Sincerely,
Elsie

Medical Reply

Thanks for your interesting remedy for RLS. I will post this and see if others can be helped by this novel treatment.

Subject: RLS
Date: Fri, 10 Apr 98 17:29:29 PDT

I have just heard of RLS and boy does it click with some things I have been dealing with for several years now. I had some electromyography test done and they showed low amplitude peroneal motors although superficial peroneal are not affected. In RLS is this typical? I also wondered if weak legs were a symptom. Some times my legs feel like jello and other times I feel as if there is fire running through my left leg veins.

What really caught my attention on your web site was the feeling of just needing to move legs to find relief. I have experienced this for some time but it sounded to weird to mention to my doctor. I also have suffered from "unexplainable" insomnia for about 3 years now, Xanax really helped but my doctor was afraid of addiction and the possible connection of weak legs and Xanax. Any advice you have will be greatly appreciated!

Thanks for a great web site!!
Melissa H

Medical Reply

The EMG findings are not indicative of RLS, as there are no EMG changes associated with RLS. Your other symptoms are consistent with RLS and the insomnia may be from PLMD, which can be made better by Xanax. It is alright to use Xanax, as long as you take regular drug holidays. I do not know about any problem of "weak legs" and Xanax.

Subject: RLS and dopamine
Date: Fri, 10 Apr 1998 15:42:19 -0700

My son is struggling with ADD and we are very hesitant to put him on Ritalin. When discussing this with my father, he said that he knows that there are RLS medications that affect dopamine levels, which is what my son needs help with. Is there any connection at all?

Any advice you can provide would be appreciated.

Jim D.

Medical Reply

There is some evidence that ADD and RLS may be linked and that a significant proportion of ADD patients may have been suffering from RLS. ADD is likely caused by a diverse bunch of other primary disorders, of which RLS may be one. Until RLS is actually diagnosed in your son, specific RLS treatment would not be appropriate.

Ritalin does raise dopamine levels in the brain and can be an effective medication if titrated carefully.

Date: Friday, April 10, 1998 9:01 AM
Subject: RE: RLS

Does RLS always go away when people stand up?? This, that I have, does not!. And It doesn't keep me awake. Is that typical?? I don't HAVE to move my legs/feet either, it just stops (the buzzing) if I do. The other thing I notice is if I cross my legs for any length of time they almost fall asleep. Same for if I press my arms on something.

Like they used to do if I would cut off the circulation for much longer, but now it happens sooner, just wondering!!

Thank you again!!!
Terry V.S.

Medical Reply

The RLS seems to go away more with walking (or movement) rather than just standing, but this is a very individual thing. The RLS will only keep you awake if it is more severe. It is kind of like back pain, if it is mild you can sleep through it, but when it is severe, you may not be able to sleep.

The falling asleep of your legs is a common problem that is unrelated to RLS (and likely is of no medical concern unless it gets worse without any pressure applied).

A Reply from Terry V.S.

Date: Monday, April 13, 1998 9:19 AM
Subject: RE: RLS

Now that it is obvious that the daytime RLS is more of a problem for me, although minor, compared to some people. What would you recommend??

Unfortunately my job requires that I sit without movement for an hour or so at a time. I work closely with patients in a dental office. The RLS drives me nuts sometimes when I have to keep still. I don't HAVE to move- I just want to!!! Would going to the Klonopin regularly- say every night help the daytime RLS?? Advil...doesn't help. Would Vicodin be a bad choice -given my job??

Thank you very much!!! AGAIN!!!

Terry V.S.

Medical Reply

Klonopin is not a good choice for daytime RLS (in most),as to be effective, it usually causes daytime sleepiness. Some do use Vicodin for daytime RLS, but this can cause some "fuzziness" in your daytime mental functioning.

The Parkinson's disease medications are best for not affecting daytime function (such as Permax, Mirapex, or Sinemet). There is no daytime sleepiness and most do very well with this class of medication.

Date: Monday, April 13, 1998 10:51 AM
Subject: RLS and Obstructive Sleep Apnea: Medications?

I have been diagnosed with OSA (Obstructive Sleep Apnea) AND RLS.  I am on a CPAP machine for2 months now and waiting for a BiPAP study and machine because I cannot exhale enough against the air pressure of the CPAP machine so that I can get sufficient air pressure to make the treatment work  

In reading 9 pages of readers responses, I don't see many people on the drug Neurontin . I have been taking it for 2 weeks and feel that it is somewhat more sedating than I like, but I also do not see any consistent reduction of my RLS even though the dosage has been increased.

Two questions: Am I not going to be able to control my RLS until the BiPAP has successfully treated my Sleep Apnea? Should I be taking RLS medication in the meantime? And, due to overwhelming crying spells from a reactive depression, I was also put on Wellbutrin. The second question is, are these two medications compatible given my diagnoses?

Thank You,
Karen L.

Medical Reply

The only class of RLS medication that cannot be given with OSA is the sedative class. These can be given if a sleep study is done to show no worsening of the sleep apnea while on the sedative drug. All the other classes of RLS medication (including Neurontin) can be used with RLS.

Wellbutrin does not affect OSA, but may help or worsen RLS. This is a very individual reaction and you must decide for yourself whether or not the RLS is worse with Wellbutrin.

Date: Monday, April 13, 1998 12:48 PM
Subject: RLS

I have had RLS for quite sometime, it started out maybe a couple of times a week. Now that I am older, this past year it has worsened and whether I go to bed early or late it is awful. It's every single night and I have to get out of bed and then it usually returns again during the night and I wake up.  By the time I fall asleep it is time for me to get up and go to work. I wake up in the middle of the night or when I first get into bed, I have to get right back up. I am so tired during the day. I also exercise every single day and this has not helped at all.

It was so bad that recently I went to the doctor with an article I had found because in the past most doctors did not even know what I was talking about. I asked him for Sinemet which I have been taking only three days (only 1/2 pill at night). Immediately the leg sensations went away. But, I am very concerned because all that I have read about the problems with the drug. I have printed out all your articles and I am going to give this to my doctor. I am on Sinemet CR 50/200 and I only take one pill before bed.

I would appreciate any comments you might have.

Betty V.

Medical Reply

Sinemet can be a very good drug for RLS, but there can be problems. If the dose is kept below two to three of the 25/100 tablets, there are very few problems. You are now on the equivalent of two of these (50/200). If this does the trick for you and you do not need to go to higher doses, then likely you will have no problems.

If you do need higher doses, then consider a change to Permax or Mirapex.

A Reply from Betty V.

Date: Monday, April 20, 1998 12:29 PM
Subject: Restless Legs

I mentioned to you before that I was taking Sinemet for my RLS for about a week now. This seems to help. But one thing that I did forget to mention is that the Sinemet is not allowing me to sleep. In other words, it is helping me with my legs but I am not in a deep sleep, I am having strange dreams and having restless sleeping and not in a deep sleep. I seem to be turning a lot from side to side. (I am taking Sinemet CR 50/200 one pill every night)

I was going to switch over to Permax. What are your suggestions?

Betty V.

Medical Reply

It is difficult to say what you should do at this point. If you are going to switch to Permax, wait and see how you do with Permax. If, with proper titration of the Permax,   there are no RLS problems, then it might be that you have another problem causing your poor sleep. PLMD, which is associated with RLS, can often be a cause of poor sleep and although it is also treated by the Parkinson's disease medications, might still be one of your problems.

If after you are on adequate doses of Permax, and you still need help, you may want to consider adding a nighttime sedative such as Xanax or Ambien.

Date: Tuesday, April 14, 1998 2:26 AM
Subject: RLS

Greetings to fellow RLS sufferers!

It does seem selfish to express delight in finding I'm not alone! RLS has, over the last 35-odd years, ruined so many movies, car trips, dates, plays, and lectures that I often wonder how I've managed any fun activities whatsoever. The red-eye flight from Los Angeles to Toronto is a vile memory--I KNOW the flight attendants thought I was trying to break dance in my seat. (I adore Canada, but if I ever must travel that far again, I'd rather crawl there than risk another plane ride!)

To compound my problems, I recently discovered, after 48 years, that I have Attention Deficit Disorder. Many of you know all too well how entertaining it is to convince the medical community that your symptoms of RLS are real. (Especially if your insurance company's name begins with a "K" for kiss your benefits goodbye.) The doctor's looks of pity and embarrassment as he/she gives your complaints the brush-off? The glazed expression as your medical provider mentally writes you off as a hypochondriac?

Well, multiply that twenty-fold for anyone lucky enough to be amongst the 5% of the population with ADD and the 5% with RLS. Throw in the inevitable clinical depression associated with ADD, and your credibility factor is around zero for convincing people that what you suffer from is REAL. So it's a pleasure to find support groups. Do any meet in the Monrovia area?

Three years of fighting to be "officially" diagnosed with the ADD I knew I had, and then to endure years of trial and error finding drugs suitable for both depression and ADD, have made me loathe to try to medicate the RLS. [My suicidal 10-year-old child bounced from doctor to doctor for 2 years before finally getting an accurate diagnosis (bi-polar) and even marginally-effective medication. Guinea pigs, all.] I'm lucky to remember to take my daily Dexedrine and thyroid pills.

Adding yet another list of medications to try makes me dizzy. And after reading all the wonderful letters on this web site, I realize that as obnoxious as my case of RLS is, many of you have it much worse. My legs don't wake me during the night, it's the realization that I forgot to put a stamp on my tax payment to the IRS!

Reading about the great calcium debate reminded me of the time I donated platelets to City of Hope. The process was like blood donation, but took much longer. All the other donators reclined serenely, whereas my legs began the dreaded jittering about, to the point I thought I must have St. Vitus' Dance. Finally an aide gave me a calcium injection. That quelled the RLS symptoms fast.

Sorry this letter is so long. Any advice will be relished. And may you never feel antsy again!

Holly

Medical Reply

There may be some link between ADD and RLS. The other concern is that if you are sleep deprived from RLS or PLMD (which is often associated with RLS), then the resultant decreased daytime concentration, may simulate ADD. For the most part there is not much interaction between the RLS medications and ADD medications. This should be discussed with your treating physician. If necessary bring in a copy of our RLS Treatment Page to help your doctor decide on what to use for your RLS.

The Restless Legs Syndrome Foundation, Inc.  is an excellent source of information on RLS. You can also look up other support groups around the country on their web site or go directly to their list of support groups in the United States.

Date: Wednesday, April 15, 1998 9:11 AM
Subject: RLS and Ultram

I have been suffering from RLS for about 10 years (I am now 27). Over the 10 years, I have tried Sinemet, Klonopin, Ultram, Permax, Tylenol with Codeine #3, Vicodin, and Valproic Acid. I am currently on Neurontin and occasionally Klonopin when the conditions get really bad. I was put on Neurontin because of two seizures I had while on Ultram. It was decided by several doctors that the Ultram caused the seizures.

I have no history of Epilepsy or seizures in my family. So, of course, I went off the Ultram, which had been working wonderfully, and was put on Vicodin. I got addicted to the Vicodin, which also worked wonders on my legs, but now that I have gotten myself off the Vicodin, I'm trying the Neurontin. I'm taking 200mg per night which barely gets me through the night.

But what should I do during the day? I have to sit through many meetings and travel a lot, which makes my legs miserable. The Sinemet no longer works, the Valproic Acid upset my stomach, as did the Permax, I'm afraid to take the Tylenol due to the addiction I got while on Vicodin. And, of course I can't go back on the Ultram. So, I don't know what to do. Is there anything else I can do?

Thank you,
Sharon E.

Medical Reply

The Neurontin sounds like it is the right drug for you (for the possible seizure disorder and for your RLS). You can go higher on the daily amount of Neurontin (with the agreement of your doctor). The average dose that worked for RLS sufferers was about 900 mg (this can be used 300 mg three time per day). This drug works well in the daytime (usually no daytime sleepiness). Talk to your doctor about slowly increasing the dose until your RLS symptoms are relieved.

Date: Sunday, April 12, 1998 7:02 PM
Subject: RLS and snoring

I read your letters and answers every few weeks or so. I'm 55, and was diagnosed about 15 months ago. I also have two heniated discs in my neck with mild radiculopathy per the EMG, diagnosed at the same time. Interestingly, the RLS thing started after the neck problems and involves arms as well as legs. I do have daytime symptoms sometimes, and some evenings the twitches start in on the drive home. I have a one hour drive to work one way, and a pretty stressful job when I get there.

The neurologist started me off with Klonopin, but I couldn't tolerate it, especially with the drive. After finding your web page I suggested Xanax, and he was willing to give it a try. All in all, it has worked fairly well. The problem has really been the mixture of RLS, the neck, and other problems that I have. It was felt that my neck problem was "non surgical" and could be treated conservatively. I took non-steroidal-anti-inflamatories drugs (NSAID's) to help with my arm (and leg) pain. Between them and the Xanax I really did pretty well, sleeping OK most of the time.

Then I had a GI bleed and was told I could no longer take any NSAID's. That diagnosis was spastic colon. Without something for the pain I didn't do as well. We next added muscle relaxants, but that was a disaster. My previously occasional snoring became worse, and again I felt drugged in the morning. Stopped those. Then we tried Elavil, low dose. Actually, I felt great on the Elavil for a few weeks. I was able to reduce my dose of Xanax, the pain was better, and I felt like I was sleeping better. Still snoring, however. Well, the old side effect bug got me again, so goodbye Elavil. I was not yet willing to yet try Sinemet, since I already have daytime symptoms.

By now I am feeling pretty tired in the morning, and am waking up during the night. Some times I don't know what wakes me up, some times my husband pokes me to turn over because I am snoring and woke him up, sometimes the snoring wakes me up. When this all started I felt pretty lucky because even though I was tired in the morning, I felt I was sleeping better that the usual RLS patient. When I follow my routine I can fall asleep pretty well. (Xanax 1/2 of a  .25 at 9:30, another Xanax .25 at lights out, and a 20 minute meditation tape). I can take up to 3 of the Xanax .25 an evening, but rarely use over 2. However, the wake up business is getting worse, and on a bad night I will wake up every two hours starting at midnight. When I get up in the morning I usually sit on the couch for a few minutes to help wake myself up. My legs are usually very "alive" at that time. I do not have any jerking of the legs you would notice, but I certainly have twitching sensations.

I am now on Prozac 10 mg in an attempt to replace the overall good effects of the Elavil. I had a trial of Claritin in an attempt to help my snoring by improving my allergies, but of course that made my legs worse. I am still using Flonase for my nose before bedtime and that has helped.

I'm now scheduled for a sleep study in an attempt to find out just what is going on at night. I really believe that my snoring has become much worse since I have started treatment for my legs. I'm also having increasing problems becoming alert in the morning.

I guess my question is really related to any relationship between the snoring and the treatment for RLS, and what can I do when there appears to be so much I can't take anymore. I have certainly learned to live with the daytime symptoms, but I really worry about getting into a car in the morning. (I've given up caffeine so I don't even have that to help.)

Thanks again for the wonderful service you have provided to all of us RLS sufferers.

Jo

Medical Reply

There is no real relationship between RLS and snoring, except that any sedative (Xanax, Klonopin) can make snoring worse. The concern in your case is whether or not you have PLMD (leg jerkin causing many arousals during the night causing poor quality sleep) or sleep apnea which can also cause poor quality sleep and resultant daytime sleepiness (and be made worse by a sedative just as snoring is made worse by sedatives).

A sleep study should settle all the above concerns, so you are on the right track. The Parkinson's disease drugs (Permax, Sinemet, etc.) are very good for RLS and do not interact with sleep apnea or snoring.

Date: Thursday, April 16, 1998 3:15 PM
Subject: RLS with FMS

I am a 40 year old female that was diagnosed with Fibromyalgia 2 years ago. I was diagnosed with severe RLS after a sleep study was done 4 months ago. I am not able to reach REM sleep because the study showed that my legs jerking causes arousals over 50 times an hour. I also experience severe daytime discomfort in my legs and sometimes in my arms and hands.

I have tried: Ambien, Trazadone, Paxil, Klonopin, over the counter pain killers, vitamins, water therapy, exercise, ice, heat, and massage. It is dramatically affecting my daytime activities. I have given up several things and I'm functioning at a greatly reduced level. I read, and work out of my home as well as homeschool 3 children. If anyone has any suggestions please let me know.

Thanks,
Cathy

Medical Reply

It sounds as if the sedatives (Ambien, Klonopin) are not helpful in your case. Xanax would be another choice to try if you want to make sure that sedatives are definitely out.

The Parkinson's disease medications are the next choice (Permax, Mirapex, or Sinemet). They are usually effective and are well tolerated by most. This class is also effective in controlling the leg jerking (PLMD) that disturbs your sleep at night. The narcotic drugs (Vicodin, Tylenol with codeine, etc.) are also effective, but may cause some mental fuzziness if used in the daytime.

Date: Thursday, April 16, 1998 8:20 PM
Subject: RLS

I am a runner and I have noticed that since I started running, about 8 years ago, when I don't run for a few days I get this exact same problem. I lay in bed awake wanting to run around, but even when I run around, it doesn't get better. I don't get this feeling unless it's nighttime and I'm trying to sleep, and, as I said, unless I haven't run for a few days. It sounds similar, but then a lot of the people on this site describe a much more serious problem.

How do people determine whether they want to be medicated to stop this condition? It only happens to me about 10 times a year, at the most, because I run fairly consistently.

Just wondering,
Desiree

Medical Reply

Your problem sounds like RLS, but it is at this point a mild case. Most of the letters are from more severe cases. At first, in the mild cases, the RLS occurs only sporadically and only when trying to go to sleep. As the condition worsens (often with getting older), it will occur almost any time you sit or stop moving.

Exercise is a good treatment and should be the main therapy in your case (as long as it stays mild). On days that you cannot exercise, a mild sedative such as Xanax or Ambien would be helpful.

Date: Thursday, April 16, 1998 6:26 AM
Subject: Ultram

I have been taking Ultram for the past month or so, generally with good success. However, I have had an interesting side effect which I can find no explanation and my doctor had no suggestions either.

I was taking Sinemet CR and Vicodin with great success. However, I was concerned about he long term effect of taking Vicodin, since I am only 32 years old. Thus, my doctor and I decided to try Ultram. I take Ultram about one hour before I am going to sleep. I have noticed that about 50% of the time my right leg muscles (calf, thigh, and hamstring) will experience mild to moderate RLS twitching for a good hour or so.

It is really kind of annoying and I started to generally track it. I could not find any   relationship to anything (food, exercise, stress, etc.). It just seemed to happen randomly. Then, I tried taking the Ultram about three hours before I am going to sleep. This is the time that I would usually take the Sinemet CR, so that the two hour ramp up time would be completed before I am trying to sleep. This three hour window type effect worked well for the Sinemet CR and also for the Ultram. I was really happy and I gave the information to my doctor, so that he could pass it along, or whatever, help someone else. Now though, this three hour window is not really working.

I would greatly appreciate any observations, recommendations, or the likes. I am back taking the Sinemet CR / Vicodin combination every night until I figure out what is possibly going on. I am thinking about alternating every other day or maybe every week the Sinemet CR / Vicodin then Ultram the next week to help my body not get used to any specific drug.

Your comments would be greatly appreciated.

Sincerely,
Robert G.

Medical Reply

Your 3 hour window of symptoms is somewhat unique to you, so this cannot be generalized to others. Sinemet CR does have a slow onset of action (which might account for some of your 3 hour window), but Ultram and Vicodin both have fairly rapid onset of action.

We do have many patients alternate Ultram and Vicodin. Some use Ultram (or Vicodin) only for drug holidays of one weekend every two weeks while others may take Ultram for 3 days per week and Vicodin for the other 4 days. There is no standard way to do this.

Date: Thursday, April 16, 1998 9:53 PM
Subject: Sleep at last

There is hope for all of you suffering from RLS. Keep a positive attitude and you'll find relief. I did.

After trying several expensive drugs with a myriad of side effects I've finally found a solution that works for me and no drugs are involved. On the advice of a dear friend I went to a Kinesiologist. For those of you who don't know about them, they make their diagnoses after an extensive muscle testing process. Anyway, he suggested I take 1000 mg. of magnesium, 3 mg. melatonin and 2 capsules containing hops, valerian root and scullcap herb 1/2 hour before going to bed. All natural, no dangerous side effects.

The first two nights I took the pills weren't much better, although my legs quieted down after two or three hours. Disappointing! The third night was the charm. I kept waiting for my toes to curl and legs to cramp and jerk but it didn't happen.  It's been one full month of restful sleep. No more RLS. Can hardly believe it.

I also have a Reiki treatment once a week. Since RLS is thought to be a neurological syndrome the Reiki balances my energy, thus balancing me neurologically.  Look for a good, qualified Kinesiologist. He or she may be able to help you too.

Good luck,

Carol W.,
Glendale Hts., Ill.

Date: Saturday, April 18, 1998 7:05 PM
Subject: RLS

I am a very active 55 year old who stopped eating all red meats about 3 years ago. A short time latter I went on a physical fitness kick and RLS developed. I have now been to four doctors. One had no answer, number two said I was exercising to much. Number three put me on Klonopin, number four says it is a muscle disorder and their is not much that can be done about it. I read where melatonin helped (must have been written by someone selling it.)

Anyway here I am with RLS,
Chuck I.

Medical Reply

It is as yet unknown why and when RLS develops in people. It is associated with certain conditions, but for the most part, it occurs all by itself without any known cause. Your exercise likely has nothing to do with your RLS.

There is no real cure for the disorder, but there is lots of treatment for the symptoms. Check out our RLS Treatment Page and see a doctor (especially a sleep specialist if possible) who should be able to help you considerably.

Melatonin is useful for helping people fall asleep, so it may help some RLS sufferers get a better night's sleep despite the RLS symptoms.

Date: Monday, April 20, 1998 7:20 PM
Subject: Restless Leg Treatment

My mother, who is 80 years old is taking a lot of medications. Some are making her spacey. She has had RLS for a long time. She feels she is a member of the night walkers. These medications are helping her sleep at night, but she wakes up spacey. And feels sleepy (7pm) way before she usually sleeps at 11pm. I would like your opinions about these medications.

At bedtime:
Hydrocodone/Apap 5/500  (Substituted for Vicodin 5/500 tablet)

At bedtime:
Sinemet CR 50/200 tablet.

At bedtime:
Clonazepam, 0.5mg tablet (substituted for Klonopin 0.5mg tablet)

At bedtime and dinner:
Neurontin 300 mg capsules PD

At dinner:
Sinemet (Carbidopa/ Levo) 25/100 tablet

Ultram (Tramodol Hydrochloride) 50 mg tablets, 3 pills a day.

I would like your opinion about this treatment.

Thank you.
Eugenia

Medical Reply

The most likely cause of her "spacey" feeling might be the Klonopin or the Ultram. Klonopin lasts a long time in the body and will often cause daytime effects such as sleepiness. Changing to a low dose (the lower the better for an 80 year old) of Xanax might be better to decrease the daytime complaints.

The Ultram also might cause some daytime "spacey" feelings. It is not a narcotic, but works similar to them. She might also do better without the daytime Ultram, if she does not need this medication to control daytime RLS symptoms.

Date: Tuesday, April 21, 1998 12:00 PM
Subject: Re: Message from Leon K.

This relates to our e-mail exchange earlier this month (see top of this page). I took a two day drug holiday from Ultram which went quite well. After being back on the Ultram, I am now in the process of taking a drug holiday from Clonazepam. You were correct in your supposition that the difficulty that I was experiencing on my previous drug holiday was caused by Clonazepam (Klonopin) withdrawal. I have now been off the Clonazepam for 5 days and am still experiencing difficulty concentrating as well as light headedness. The RLS pain symptoms appear to be under control although I have not been sleeping too well without the Clonazepam.

Frankly I would like to stay off the Clonazepam if I could, and just rely on the Ultram for the treatment of my RLS. I just don't know how long I am likely to experience the withdrawal symptoms described above and I would be very interested in your thoughts on the desirability of trying to stay off the Clonazepam.

Again, with thanks,
Leon K

Medical Reply

You could try to stay off Klonopin (clonazepam) and see how you do. If the RLS is under control, then you were likely using the Klonopin more as a general sleeping pill, rather than as an RLS medication. If that is really the case then you are better off without any sedatives.

If you do find that despite the above, you need something for helping you sleep, consider only the short acting sedatives such as Xanax, Ambien, Prosom, etc. If you do use them, an every other day basis works well, or if needed daily, 2 day drug holidays will prevent tolerance and addiction.

The withdrawal symptoms from Klonopin usually should resolve in 5-8 days.

Date: Wednesday, April 22, 1998 2:30 PM
Subject: RLS

I have read with interest the letters from sufferers of RLS on your website. Reading them has caused me to question whether or not that is what I suffer from, and I do hope someone can help me and give me some advice. My symptoms appeared at age 13, immediately following a bout with polio. The problem is in my knees only. They twitch and jump and hurt like heck.

I am so tired of being a "night walker". However, it seems most of the sufferers have tingling, crawling, like worms in the veins, the symptoms in the toes or calves. My problem is uniquely in my knees and cause me to thrash around in bed at night. Sometimes I thrash enough that one of the knees will give a loud snap noise which seems to relieve the jumping for a while. It sounds so trivial to say I have jumping knees, like it's nothing much.

The only medication I have found which helps at all is Valium (diazepam) because of its properties as a muscle relaxant. Pain medications such as Tylenol 3, Darvocet and Percocet have no effect whatsoever. I have talked to doctors from a rheumatologist to a neurologist to two orthopedic surgeons, and they are all stumped--the only plausible reason they can offer me is possible nerve damage from the polio.

After 45 years of RLS or whatever it is, I am often tempted to swallow the whole bottle of Valium and end it for good. Hopefully it world work. I really am on the verge of suicide. Last fall I had total left knee replacement (damage from an accident, not related to RLS), and post-surgery the RLS was just as bad as ever. They replaced the joint but not the nerves, so maybe it is nerve damage. I only know that I'm in trouble and need help. I am a 58 year old female at my wits end.

Can somebody help me?
Jini

Medical Reply

Your symptoms do indeed sound like RLS. Not every RLS sufferer has typical (if there really is such a thing) features. There is a lot of variability in RLS symptoms amongst patients. Yours are only a little different the most, and there may be some influence of your previous polio on your RLS manifestations.

As the pain medications do not help you, the next class to try would be the Parkinson's disease medications. Permax, Mirapex, or Sinemet are good choices to consider. These drugs do not usually cause drowsiness, so they work well with the sedatives (Valium, which obviously helps you).

If the above treatment does not help you, check our RLS Treatment Page for other options. Most neurologists should know how to use these RLS drugs, if not, then see a sleep specialist who is knowledgeable in RLS.

Date: Wednesday, April 22, 1998 7:31 PM
Subject: Message from Internet

Hi my name is Pam and I just found your site. I too have RLS. Yesterday I went to the doctor with this problem. He told me that they really don't know what causes this and there's no cure. He did prescribe me quinine sulfate (generic for Quinamm).

The first night I took this, it seemed to make the problem worse. My legs were more restless and as usual I didn't get much sleep. Also the next day my legs were achy and one of my knees hurt. My legs are not usually restless during the day .

I was wondering if any one else was prescribed this drug. And how do you get a doctor to understand your problem. Especially if there set on the Quinamm. I'm currently looking for a new doctor but I'm afraid they will be the same. My pharmacist recommended clonazepam. What do you think of this one? How long do you have to take? What are the side effects? Does it help in sleep?

Thank you for your time I will be waiting for your answer.
Pam

Medical Reply

You should start by reading our RLS Treatment Page. Quinine is rarely helpful for RLS and is most often prescribed for RLS by doctors who are not well versed in treating RLS. Your physician needs some education on RLS and you may be able to help him by bringing him a copy of our RLS Treatment Page.

Clonazepam (Klonopin) can be very helpful in RLS, but it has a long duration of action and can cause daytime sleepiness. Xanax or Ambien will do the dame job for sleep, but let you wake up refreshed. This is all well outlined on our Treatment Page. The Parkinson's disease medications, such as Permax, Mirapex can also be very useful for treating RLS symptoms. If your regular physician cannot treat you with the aid of our information, then please seek out a sleep specialist who is willing to help you resolve your RLS symptoms with the available effective RLS medications.

Date: Thursday, April 23, 1998 8:23 AM
Subject: Restless Leg Syndrome & Prozac

Hello, I recently stumbled across your web pages and I was astonished to find out that "RLS" exists. I was even more astonished at the number of people who actually suffer from the condition. In some way I felt slightly relieved that I was not the only one this was happening to.

I never had the symptoms until I started taking Prozac, the antidepressant. The symptoms only occur when I'm sitting down late at night if I'm very tired, during a long car journey, or simply watching television.

The only way I can describe the feeling of RLS is that "something is wriggling about in my legs as though it's trying to bore a hole through my muscles to get out". It mainly features in the calf muscles. The only way to make it stop is to stand up and walk about for a while.

My main concern about RLS is that: is it dangerous? and should I stop taking Prozac? Your advice and comments would be most welcoming.

Kind regards

Dawn W.
Surrey, England

Medical Reply

Prozac can have a variable effect on RLS. However, with the timing of your RLS problems coming at the start of the Prozac therapy, it is easy to say that the Prozac may have been responsible. Stopping the Prozac at this time will likely be somewhat helpful, but once the RLS problem starts, it may continue even after the initial trigger is removed.

Your RLS is fairly mild from your description of symptoms. The major way that RLS can be dangerous is if when severe, so much sleep deprivation occurs, that motor vehicle accidents can occur. Additionally, as with any severe chronic pain syndrome, severe depressions have been known, even resulting in suicide. Otherwise mild RLS is just an annoying problem that can often be taken care of with conservative therapies (exercise, stretching, etc.) or mild medications (see our RLS Treatment Page).

Date: Thursday, April 23, 1998 4:44 PM
Subject: Medication question

Having tried all the benzodiazepines (sedatives, Klonopin worked for 2 years), opioids, and dopamine related drugs (which kicked off anxiety side effects), my doctor recommended Nefazodone as a possible treatment. I've heard horror stories about antidepressants and RLS, but he assured me that Serzone enhances sleep, limits nocturnal awakenings, may act on the tingling, and does not hurt libido. He, in fact, claimed that it had the opposite effect on libido, even priapism in rare cases.

Can anyone validate its effectiveness in alleviating RLS symptoms?

Dave C.

Medical Reply

Serzone (Nefazodone) is in the Prozac group on antidepressants. As with virtually all the antidepressants, the effect of this drug on RLS can be extremely variable. It can make the RLS much worse, much better, or no effect at all. I have no percentages of how many get better or worse, but for most, the effect is usually only modestly positive or negative.

The side effects of these newer antidepressants tends to be much lower than the older ones, but as with any psychotropic (affecting the mind) medication, side effects do occur occasionally and can be bothersome.

Date: Friday, April 24, 1998 11:06 AM
Subject: RLS and Feet on Fire

I am 28 years old and remember the sensations back in middle school when taking long bus trips. Now it's progressed. It's the same creepy, beat and shake your legs until it stops feeling that everyone else has described, but no pain thankfully. I am unusually tired anymore during the day, possibly from frequent sleep disturbances that I am unaware of.

The only thing that helps at this point is moving to my own bed where I can spread out and kick my legs to give them jolts. During the day, I have a constant problem.  I am afraid to medicate myself, however, I would like to start. What is the safest and least expensive drug treatment out there? My fear is that these are early signs of Parkinson's Disease. Is there any study that has followed RLS patients through the years?

Does anyone have hot feet at night? It's as if all of my blood has flowed to my feet and sometimes I need to run cold water over them. This is predominately coincides with my RLS.

Thank you for posting this support group. Much like everyone else here, I thought it was in my mind. God bless you all and good health to everyone.

Steven C.,
Kansas City, MO

Medical Reply

The fatigue may be due to nighttime disturbance from PLMD (leg jerking) which can be associated with RLS. This should be diagnosed in a sleep lab, although Xanax may help resolve this problem. It is difficult to say which are the safest medications for RLS, as people are very different, and what is safe for one may not be for another. The sedatives and the Parkinson's disease medications are relatively safe in RLS. The narcotic pain killers are often very safe if used correctly. Tolerance and addiction can occur if the guidelines are not followed.

Expense is not usually the first consideration when doctors prescribe RLS medications, but in the real world if you have to pay for your own medications and cannot afford them, then it does not matter if the drugs are good or not. Xanax (and some of the other sedatives), bromocriptine, and many of the pain killers/narcotics come in generic brands which are not very expensive. You should discuss the use of these drugs with your doctor or sleep specialist.

There appears to be no link between RLS and Parkinson's disease, despite the fact that similar medications are used to treat them. There are no long term studies (that I know of) following RLS patients for long times with or without treatment with medications. Hot feet (and other strange feelings in the limbs) are common in RLS sufferers.

Date: Saturday, April 25, 1998 11:42 AM
Subject: RE: RLS

I am still taking the Klonopin 1/2 to 1 of a 0.5 mg tablet at night, This does not consistently help my daytime RLS (buzzing left foot/leg thing - do many people have it in only one leg?? &/or left outer two fingers?). Anyway, since I have been on the Klonopin I have experienced breast tenderness. Is this from the Klonopin?  Also I have been having some urinary leaking. Is this from Klonopin?  I had this to some degree before, but I took 25-50 mg of desipramine and this helped this as well as the depression I sometimes feel.

Given the above, I would like to try the Desipramine again. Can you take Desipramine with Klonopin?? Thank you for your help. I will discuss your reply with my doctor.

Terry V.K.

Medical Reply

It is not uncommon for RLS to occur in only one limb or even part of a limb. Numbness and tingling in the 4th and 5th fingers of your hand may be due to a nerve (ulnar) problem. Your physician should be able to sort that problem out. Klonopin does not cause breast tenderness or urinary incontinence (in fact it can cause urinary retention in rare cases).

The only interaction with desipramine would be added sleepiness, so take them both at bedtime.

Date: Monday, April 27, 1998 12:32 PM
Subject: Getting off Sinemet

Have taken Sinemet for about 9 months. From 1/2 of Sinemet 25/100 to now taking 2 or 3 of Sinemet 25/100 and one Sinemet 25/250 at 9 p.m. Then I set my alarm to take one Sinemet CR at 2:30 am. If I'm lucky I can make it till 7:00 a.m. when I get up.

Called my doctor the other day and complained of weakness if my left arm (same side as RLS leg) and slight slurring or just having trouble forming words. I had a MRI and she hasn't called back and that was last week so I guess I'm OK there.

I really feel it's time to get off Sinemet! Don't like the effects in the day and I'm not sleeping well at night. My doctor gave me a prescription for Mirapex and I'd like to start it but I don't know how to decrease the Sinemet. Been waiting for her to call.

Now question: how long does it take to come off Sinemet? I have the dosage for the Mirapex but will not start until the doctor gives OK. Just curious of when I will be done with all this Sinemet. Do you feel that the dose of Sinemet I'm taking is too much?

Thanks for any help,
Kris

Medical Reply

Your dose of Sinemet is indeed too high. We like to keep the dose at less than 2-3 of the 25/100 tablets per day. Once you get to higher doses, augmentation and rebound tend to occur more readily, and most patients will want to increase the dosage and frequency of the Sinemet to compensate for this.

Mirapex is a good choice to help taper off of Sinemet and replace it. As you start the Mirapex, you slowly decrease the Sinemet as tolerated. Some can do this easily as the Mirapex dose is increased, others must go more slowly. We suggest making dose adjustments (up on the Mirapex, and down on the Sinemet) at 3 to 7 day intervals. The entire process can take anywhere from 1 week to 1 month. Generally speaking if you are not sure, then the slower the better.

Please check with your own doctor before you undertake any of the above changes.

Date: Monday, April 27, 1998 9:52 PM
Subject: symptoms of RLS

My mom has had what she calls the heebie-jeebies in her knees in the past. Now she has something that she just calls Hell. It doesn't manifest itself in the limbs, but is all over. She gets and overwhelming sense of anxiety, extreme cold, jumpiness, depression, and fear. Can RLS develop into something like this?

While her family doctor has no answers, the doctor has re-prescribed what her gynecologist prescribed for her for a spastic bladder, Xanax. It seems to help and I noticed in your web page that Xanax is used to relieve RLS symptoms. She also says that she noticed that it frequently occurs when she is stressed or tired.

Since these are at least two connections to RLS, I wondered if maybe my mom has a severe case of RLS. Do you have any advice? She is desperate and, since she is not covered by a health plan (only hospitalization), continued doctor visits without any relief is getting expensive.

Your help would be greatly appreciated by not only her, but by myself, her son.

Cecil M.

Medical Reply

It is difficult to diagnosis your mother based on your description so far. Anxiety, depression, fear and jumpiness are common features of many disorders, so it makes it difficult to implicate RLS as the absolute cause. RLS can certainly result in many or your mother's complaints, especially when the RLS is severe.

Xanax would help the RLS, but it would also help anxiety from other disorders, so that also does not necessarily pin down the diagnosis. Sorry I cannot give you a more definitive answer, but with the limited information so far, it cannot be done.

Date: Tuesday, April 28, 1998 6:41 AM
Subject: simple

I have had RLS for 45+ years. It comes and goes. I have discovered that potassium helps me. A capsule in the evening or one a day solves the problem. Has anyone researched this? I do not have time to read all of the letters. A database with "search" would be nice.

Really appreciate your "site".

Rick G.

Medical Reply

A few RLS sufferers have noted that potassium has helped (mildly to greatly) their RLS symptoms. This treatment has only helped a very small minority of the RLS population.

There are so many topics covered that it is difficult to produce a database for search purposes on our web site. You can however use the search function (usually "find" or "find text") built into most web browsers to find the info that you are searching for on each web page.

Date: Sunday, May 03, 1998 2:35 PM
Subject: Re Restless Leg Syndrome

My name is Kim and have suffered from RLS for many years. After seeing my G.P. and 2 Specialist, and getting no help from them, found my own solution, by accident from the local health food store. Magnesium tablets taken in their chelated form which work immediately, have just about taken away my problem altogether. If taken regularly, I sometimes forget I have the problem. However when I have a bad night, I take50mg tablets generally 2 at a time, and wait to see if I can then sleep.

Sometimes when it is really bad, I have had to wake up to 3 times to repeat this procedure. But it beats pain killers, or anything unnatural. I hope this may help other people. Because as I suffered severely, RLS made my life a living hell,and I would like to think this may do some good for others as well.

Kind Regards,

Kim E.,
New Zealand

Date: Monday, May 04, 1998 10:29 AM
Subject: RLS

I have a friend who has suffered with jerking muscles that keep him from getting adequate sleep. I am looking for any information I should give him. He has no idea that other people suffer from the same disorder.....He will be so relieved if there is hope for relief!

Esther P.

Medical Reply

Sounds very much like your friend has PLMD (Periodic Leg Movement Disorder). It is quite treatable. It may or may not be associated with RLS.

Most of the information that he would need is on our web site or at the Restless Legs Syndrome Foundation, Inc., which is an excellent source of information on RLS/PLMD.

Date: Monday, May 04, 1998 9:52 AM
Subject: RLS/hot feet

Just found your site and thought I'd give it a try. It seems that the discomfort I have at night is also tied in with the feeling of hot feet. They are not swollen and may not even be excessively hot, but they feel that way. And usually only one leg at a time is bothersome. Do these variations fit the syndrome?

Sincerely,
Joan W.

Medical Reply

Hot feet seem to be fairly prevalent amongst RLS sufferers. It is also typical for the feet not to feel hot to the touch and swelling of the feet is definitely not part of the disease. Many RLS sufferers complain of only one limb bothering them at a time, although most have both (sooner or later) bothering them together.

Date: Thursday, May 07, 1998 5:52 AM
Subject: RLS and Permax

I was referred to you by the RLS foundation. I have recently changed from Sinemet to Permax due to augmentation.

How long does Permax take to kick in? I have been taking it for almost two weeks with very little success.  I would appreciate any help you can give me.

Thanks,
Kathie

Medical Reply

You do not say what dose of Permax you are taking. The Permax should work immediately, but you may not be taking an effective dose. The Permax dose should be increased by only one .05 mg tablet every 5-7 days, in order to avoid side effects. Discuss titrating the Permax (slowly, as discussed) to the correct therapeutic dose with your doctor.

Date: Thursday, May 07, 1998 9:03 AM Subject: dosage

I'm a little desperate here. Can you help me out?

My Neurologist gave me a prescription for Mirapex. She said when I felt I needed to change over from Sinemet to go ahead. I've been trying to call her for the last two weeks and haven't gotten a reply.

This is what I'm taking:

1 25/250 at 5pm
1 25/250 and 1 25/100 at 9pm
1 50/250 (Sinemet CR) at 2:30 am
and last night I had to add 1 25/100 at 3:30 am

I have the sheet for Mirapex that gives the steps to take the Mirapex but I don't know how to decrease the Sinemet and in what time frame. I also never had RLS until late in the evening (around 9pm) until I started the Sinemet. Now it starts at about 11am if not sooner. I know it's the rebound and augmentation stuff that is doing this. My question is if I didn't have RLS until late before the Sinemet do I need to take Mirapex in the morning, afternoon and evening? Should I only take a evening dose?

Thanks for any help you can give me.

Kris

Medical Reply

Mirapex is usually started at 0.125 mg at bedtime and can be given up to three times a day for daytime RLS. Since you have daytime RLS (even though it is likely due to rebound), you will likely need Mirapex starting about 1 hour before the onset of your daytime RLS problems. It is also very likely that after you taper off of Sinemet, that the daytime RLS may resolve, and you will only need the Mirapex in the evening.

Make sure that you taper slowly off of the Sinemet. You may also need higher doses of the Mirapex (more than one tablet, three times a day) until the Sinemet is out of your system. Please check with your own doctor before instituting any new medication changes.

Date: Sunday, May 10, 1998 7:42 AM
Subject: Message from Leon K. - May 10th 1998

I just wanted to let you know how well I have been doing since I stopped taking the Clonazepam (Klonopin). As you had advised it took about 8 days before I got over the withdrawal symptoms but since then I have been sleeping well and have even been able to cut my Ultram back from 200 mg per day to 150 mg. I took a two-day drug holiday from the Ultram last week and although I needed codeine to help me through it was not too bad. As you suggested I now am spacing my drug holidays from Ultram every three weeks.

I am now sleeping through the night and feel much more alert during the day. I can't begin to tell you how much I appreciate your guidance.

I have been thinking a good deal about the possible causes of RLS and I suspect that some chemical imbalance must have a major role. RLS seems to worsen with the ingestion of certain foods and to be helped by certain vitamin supplements. I'm not sure that the blood work done during normal health exams is sufficiently detailed to identify critical out of line conditions. Could it be that the cure for RLS is simpler than we imagine? As an example, vitamin C is known to impact the potassium levels and a number of people take fairly large doses of Vitamin C on a regular basis. Also one hears that people are helped by iron, potassium and magnesium supplements, all of which I understand impact the functioning of the electronic impulse systems. I wonder how much RLS research is being done in this area.

Thank you again for your concern and your help.

Sincerely,
Leon K.

Medical Reply

Thanks for the letter letting us know that you are doing well, we are very glad to hear that. The cause of RLS has been an enigma for patients, doctors and researchers in the field. Although treatment with iron, magnesium, potassium and other chemicals has helped some RLS sufferers, they do not help the majority of RLS patients. As yet there does not seem to be any common thread of evidence pointing to a cause and universal therapy.

There is an increasing amount of research being done in the field, but still this is a small amount compared to the multitude of RLS sufferers out there. There will likely be a simple answer in the future, but right now RLS is still a frustrating disease (which can be well treated symptomatically in skilled hands).

Good luck and continued success with your RLS regimen,

Date: Sunday, May 10, 1998 8:57 AM
Subject: Restless Legs Syndrome

At last!!!!! I have been going nuts for years. My name is Mark M. I am a 39 year old male who has been putting up with this most of my life.

I can't relax in a chair or lay on the couch for very long without a deep aching coming over my left leg. The pain seems to come from behind the knee area and absolutely bugs me to death. Also when I go to bed the same thing happens and will wake me up causing me to flip and flop and even jerk and kick (this according to my wife who banishes me to the couch when this happens) I find myself getting sleepy during the afternoons from my lack of sleep.

Another thing that happens is I am unable to drive any distance without falling asleep shortly after I start driving. I guess this is from no sleep the night before or the fact I never really go into a deep sleep. Also if I am able to drive and do not fall asleep my leg starts to hurt and I feel I have to stretch or move to get some temporary relief. Recently I took a trip to Germany and flew coach class which meant I was packed in like sardines. Luckily I was able to get an isle seat which allowed me to put my left leg out stretched in the aisle. Although this helped me the stewardesses hated me. this 10 hour flight was the most excruciating pain in the butt. I could never get comfortable up and down the whole flight. The flight back even worse since I was in the middle of a row of 5 seats.

In the past 10 years I have shelled out thousands of dollars in medical tests to try and find this problem. I have had MRI's, ultrasounds, and so many x-rays I can't count, (all of which were negative). I have been through physical therapy also which did not help. I had one doctor think I had a cyst on the back of my knee and offered exploratory surgery to try and find it since the MRI and x-rays were negative. I passed on that! Then a new doctor seemed to think I had a problem in my low back (sciatica) more x rays followed by a low back epidural.injection. Still no relief and now he wants another MRI from my back down past my legs (previous MRI was knee only), depending on what he found he was leaning towards back surgery.

I have been taking some over the counter medications, such as Tylenol, Advil, Benadryl, and Motrin both prescription and non prescription strength, all of which worked for awhile but no longer have any effect. Then someone gave me samples of a non narcotic drug called Ultram. Finally relief!!! This is fantastic!  When I take this stuff I sleep all night long and very deeply. Next morning, I am good to go and no hangover like other painkillers such as Percodan or Tylenol with codeine, which I have had prescribed for me before.

Normally I would not use the entire prescription up but with this leg pain it sends me to the medicine cabinet looking for a knockout pill. In summary, I found out about this from my wife who has threatened bodily harm if I do not get help. Just the other day my mother mentioned an article in the paper about Restless Legs Syndrome which prompted this letter.

I am now going to take this new information and go to my family doctor to see if he can give me some help.

Mark M.

Medical Reply

Ultram is a very good drug to relieve RLS symptoms. Take a copy of our RLS Treatment Page to your physician and you may want to start other medication such as Permax.

Date: Saturday, May 16, 1998 6:17 AM
Subject: RLS

I now know what causes my legs to feel "strange". Several years ago I attempted to explain it to my doctor and he looked at me like I was "strange" myself. I never mentioned it again, but sometime later I came across the term RLS and it sounded like what I was experiencing. Mine is apparently a mild case but is, nonetheless, frustrating. It only happens when I am sitting still or lying down. I am not usually awakened by it, thank the Lord.

I gain relief by stretching my legs out as much as possible, flexing my foot, and hold the stretch for a few seconds. This usually works. Sometimes, I massage my calf muscle and that helps. I was not ever troubled with RLS on a frequent basis and am even more infrequently troubled with it since I changed my diet to predominately raw fruits and vegetables. It has also cleared up some other minor problems. Read about the Hallelujah Diet. 

This diet works! I personally know some of the people who have used it and been cured of cancer and other things. It does take a lot of determination and will power, but isn't our health worth it? And it's much better, in my humble opinion, than taking drugs.

BJS

Date: Saturday, May 16, 1998 7:42 AM
Subject: Sleep Study

I haven't written in a while. Brief drug history: Ultram, Xanax, and Permax seem to be saving my life and my sanity. Also I take Valerian Root during the day to quiet down the daytime symptoms. I recently got a new job; accounting at our local newspaper. Unfortunately, this is a desk job with lots of sitting, and we all know how hard it is at times to sit still! Anyway, I have recently seen anew neurologist who is sending me to the sleep clinic at Dartmouth Hitchcock in New Hampshire. I am looking forward to it and dreading it at the same time. I am assuming that they do this unmedicated so they can monitor your symptoms. Is that right?

I also suffer from PLMD and REALLY EXCESSIVE snoring. I have driven my boyfriend out of the bedroom simply because he can't sleep from the snoring and the kicking. Also, I am experiencing full body jerks that my neurologist says sounds like Myoclonus. Has anyone ever associated this with RLS? I'm just curious. I also have migraines and had a severe spinal injury years ago.

Donna

Medical Reply

Some sleep labs will want to test you after being off all you medications for 3-14 days, while others may agree to test you on you medications. Both ways of testing yield useful, but different information. It depends on what your doctor is looking for (some may want to see the effects of the medications on your problems, while others may want a baseline study free of drugs).

The full body jerks could be just a major PLMD problem, but the sleep study should help clarify this problem. Myoclonic seizures would be unusual to occur superimposed upon all your other problems.

Date: Tuesday, May 19, 1998 7:54 AM
Subject: They told me it was just growing pains

When I was growing up and complaining of "jumpy legs" they told me it was just growing pains. Well, here I am, 27 years old and the jumpy legs have yet to stop. I was very happy to find your web site and have gained the confidence to consult with my doctor about this. I have never mentioned my condition to a physician before because I figured they would think I was crazy. At least now I know that I am not alone!

I don't like the idea however of taking medication. My jumpy legs only act up periodically. I can go weeks with no problems, then have two or three miserable nights. During those times, I have been laying in bed with my legs up against the wall so my fee! t practically end up falling asleep. That usually helps, but when it does not, I wish I had a chain saw to cut my feet and legs off.

My question is this: There have been times in my life that my jumpy legs have been quite frequent (nightly) and other times when it only is periodic. Can I expect things to get worse or better as I get older, or is there no correlation?

Thanks for your time and for this great resource.

Medical Reply

Unfortunately, PLMD ("jumpy legs") tends to get worse with age. This is not always the case, but the majority do note an up and down course (like yours) with slow worsening by age 50-60.

Xanax (a sedative) may be very helpful for those occasional nights when the legs are so jumpy that you cannot sleep. If you use this drug at low dose (0.25 mg) on an infrequent basis, there is little chance of tolerance or addiction.

Date: Wednesday, May 20, 1998 11:54 AM
Subject: Folic Acid

My mother suffers from this disorder. We have heard that folic acid supplement diminishes this problem, but I am unable to confirm this.

Can you give me any information?

Medical Reply

Folic acid deficiency MAY be associated with RLS. If the RLS sufferer is low on folate (this can be checked by a blood test), then replacing folic acid has helped some of these patients. Most RLS sufferers are not helped by folic acid. Check out our RLS Treatment Page for more info on drugs and other treatments for RLS.

Date: Sunday, May 24, 1998 8:51 PM
Subject: Restless Leg Syndrome?

It is so odd that I happen to run across this web site. I am a 32 year old nurse and have never heard of this syndrome before today (I ran across it on the internet). By the name, I thought this had to be it, but I am not sure if this is what I have or not. Since I was a young child I remember trying to explain to my mom that I had to move my leg, my right leg only. She thought I was crazy, I guess.

I don't know how you do explain it and make sense of it. From reading the letters on here I am not sure I have it or not. I sleep soundly at night and my ex-husband never complained about me kicking him in my sleep. I always have this sensation of  having to move my right leg and the way I began to cope with it at a young age was to curl it up under me and sit on it. I guess that just puts it to sleep, so that I do not feel it.    To this day,  I still sit on that leg and at times the feelings are worse than at other times.

Now that I am getting older and heavier,  I feel like I may be doing damage to my leg by sitting on it all of the time, because it REALLY goes to sleep now. Does anyone relate to what I am saying? Could this be what it is? It seems when I was small I complained so much that my mom asked the doctor about it, but he had no answer.   There is a lot of alcoholism in my family; is there a connection?

Thanks,
Shelly F.

Medical Reply

It does sound like you have RLS. The major component of this disorder is a very unpleasant (to the point of a hard to describe pain) sensation in one (as in your case) or several limbs when at rest, which makes the person want to move the limb in order to get relief.   Most RLS sufferers have the leg jerking problem (PLMD), but this may be very minor and not perceived by the RLS sufferer or their bed partners.

It is unlikely that you will do any permanent damage by sitting on your right leg, but you may want to consider treatment with a physician if the problem bothers you enough. There is no known association between alcoholism and RLS/PLMD.

Date: Sunday, May 24, 1998 10:59 PM
Subject: RLS

Thank you for this web site. I have been suffering from RLS for the past 20 years. I am 42 now and I recently was diagnosed with RLS by the doctors at the Stanford sleep clinic.I was previously told by different doctors over the years I had anxiety disorders, hypoglycemia, and depression, all of which I was prescribed medication for.

My condition feels like an itch or like a tingling in my lower back which then spreads to my arms. I can't count the times I have woken up 30 minutes after falling asleep, clenching my hands and having to get up out of bed feeling like I could run 10 miles. This would happen some nights 4 or 5 times leaving me so tired the next day I could hardly think straight (which, by the way, I am convinced increases my chances of anxiety and a worse night the following night ).

The drug I am taking is Sinemet, which has worked great most of the time for the last 6 months.  But I have had to increase the dosage twice to get the same effect and now at 50/200 CR and 25/100 each night,  I am experiencing augmentation so bad the next morning that I feel I will have to try something else. I am so relieved to find out what it is that I have living with so long and I hope to find the answer for the medication problem soon.

Thanks again,
Steve

Medical Reply

Your experience to get diagnosed with RLS is very typical of the frustration suffered by RLS patients to find out what it is that is bothering them. Sinemet can be very effective in treating RLS symptoms, but as you have already found out, augmentation and rebound can be very significant problems.

I suggest that you change you Sinemet to Permax or Mirapex (with the help of your doctor, of course). These newer Parkinson's disease medications do not generally cause those problems.

Xanax or Ambien in addition, at bedtime, may be very helpful (don't forget to take drug holidays) for sleeping through the nighttime RLS, if necessary.

Date: Monday, May 25, 1998 2:29 PM
Subject: RLS

Though she hasn't been 'officially' diagnosed, I am absolutely certain my mom has RLS. She describes the symptoms to a 'T' regularly. We live in the Atlanta, GA area and I was wondering if there is a particular physician, or group of physicians in our area you could recommend to me.

She is currently seeing a doctor for asthma, bronchitis, and related lung maladies, but he seems clueless about her 'restless legs,' as she calls them. I would be eternally grateful if you could answer this e-mail, as I'd give my right arm to make my precious mom feel better soon. In the meantime, I'm going to tell her that there are others who feel the way she does and that she's not alone.

Please respond, and thank you so much in advance!
Donnie and Barry S.

Medical Reply

It is not unusual for most doctors to know little or nothing about RLS. This disorder is generally very successfully treated by a knowledgeable doctor. Most neurologists will have some idea of how to treat this disorder. If you need it, here is a listing of the ASDA certified sleep centers and sleep doctors in your area:

Atlanta

Atlanta Center for Sleep Disorders 303 Parkway Drive Box 44 Atlanta, GA 30312 Attn: Patrick Merrill, RPSGT Francis Buda, M.D. Jonne Walter, M.D. Robert Schnapper, M.D. 404-265-3722 FAX: 404-265-3833
Sleep Disorders Center Northside Hospital 5780 Peachtree Dunwoody Road Suite 150 Atlanta, GA 30342 Attn: Russell Rosenberg, Ph.D. 404-851-8135 FAX: 404-252-9946 EMAIL: nshsleep@mindspring.com
Sleep Disorders Center of Georgia 5505 Peachtree Dunwoody Road Suite 370 Atlanta, GA 30342 Attn: D. Alan Lankford, Ph.D. James J. Wellman, M.D. 404-257-0080 FAX: 404-257-0592

You may also want to check into the local support group in your area:

Atlanta Support Group

Suzanne Bassett
404-843-9728

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

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