PATIENT LETTERS ON RLS SYMPTOMS AND REMEDIES - Page 5

I'm impressed with the information on your web site and very grateful. My dad, my sister, my sister's daughter and her son suffer with RLS. There are times when I hear their tales of restlessness and sleeplessness that I feel so helpless. My sister has talked to several doctors about it and all have brushed aside her comments as unimportant or this problem is a minor one -- just get a little exercise. I am right now e-mailing your web page address to her so she can log on and read for herself.

Again thank you for your very sensitive and informative page.

Betty L.H.

Date: Sun, 6 Jul 1997 16:16:00 -0400 (EDT)
Subject: RLS

I am 46 female and have been on Klonopin for about 3 1/2 years. It worked great for the first 3 years. After increasing the dose there are times when it doesn't work at all. I tried Sinemet with bad results (bad side effects) I asked for Permax and felt terrible after taking 1/2 of .05 tab. I tried that off and on for a couple days....then stopped. After no sleep for several days I am trying the Permax again only taking it earlier in the evening...around 7:30 with about 1 or 1/2 mg Klonopin. I hope that after keeping up with this, it may be effective and have fewer side effects (Felt like I had been drinking and had a bad hang over).

My question: is the Permax any more damaging to my system than the Klonopin? My doctor won't perscribe Xanax...says it is addicting (I just saw him). He is a good guy, in that he listens, but I think I also need a drug holiday from the Klonopin....any suggestions on how to convince my doctor to prescribe something else related to Klonopin for the drug holiday?

Several questions...and a bit of rambling. But I thank you for your time.

Jan. O.

Medical Reply

Permax and Klonopin are not "damaging to our systems". Some people have side effects from these (or any other medications), but no permanent damage is done from taking these medications.

Xanax is addicting if used (however so is Klonopin). Xanax cannot be used on your Klonopin drug holidays, as it is in the same class of medications as Klonopin and will therefor activate the same receptors in the brain that you are trying to not stimulate on your drug holiday. Medications in another class, such as the narcotic/pain killers (for example, Vicodan), would be helpful for drug holidays from Klonopin.

I do prefer Xanax over Klonopin for RLS, but some patients may do better on one or the other, depending on their own personal makeup. Another Note from Jan

Date: Mon, 7 Jul 1997 16:58:41 -0400 (EDT)
Subject: Re: RLS

Thank you for your information. I do tend to worry (one of my problems) about the medications and their long term effects, but I'll try to stop worrying. I've been trying to tolerate the Permax along with the Klonopin, and am still feeling pretty dopey during the day...I teach and so I'm off for the summer...which allows me the luxury to be a little dopey for now. I just hope that this side effect goes away....I'll keep with this for a week more in hopes of some good sleep and wide awake days.

But it seems my alternatives are dwindling as the Klonopin alone is becoming very ineffective (this goes in cycles) and Sinemet made me more irritable than I already am.....Thanks again for your help.

Jan. O.

Medical Reply to Above

There may be a simple reason why you seem to be getting more tolerant of the effects of Klonopin. This drug is very long lasting (long half life) and stays in your system for up to several days. Therefor the usual drug holiday of 2 days may not be sufficient to be truly off of Klonopin. This is a good reason to use shorter acting drugs such as Xanax, which may not cause tolerance if 2 day drug holidays are taken about every two weeks.

Another drug to use may be Ambien. Tolerance (supposedly) does not occur with this sedative.

Reply from Jan O.

Date: Thu, 10 Jul 1997 17:34:27 -0400 (EDT)
Subject: Re: RLS

I appreciate your ideas and will share them when I go to the Dr....which isn't until Sept....Actually the permax seems to be working pretty well now (with fewer side effects), I'd just like to eliminate one drug, but I seem to still need the klonopin, but at least not as much. Before I got used to the permax, the klonopin didn't work alone at certain times. At anyrate, I'll ask the Dr to consider the xanax or ambien next time instead of the klonopin, and perhaps then I wouldn't need the permax...or I could take smaller doses of the ambien or xanax.....who knows....But, I do appreciate your ideas....

Thanks again.
Jan O.

Date: Thu, 10 Jul 1997 11:54:41 -0400 (EDT)
Subject: Message from Leon K. 7/10/97

You may recall that we corresponded during the month of June on my RLS situation (see page 3). At the time I had been taking Ultram and Ativan but had developed a tolerance and the effects of the drugs were severely diminished. I managed to see the head of a sleep clinic in Denver who was in agreement with your view of the need for a drug holiday. He put me back on permax, with an evening sedative of clonazepam. I had previously used Permax with some good success for about a month.

While the Permax had the effect of relieving the pains in my legs, it left me feeling quite nauseous during the day and significantly inhibited my sleep during the night. At times the pain returned during the night and I had a number of very difficult times. The good thing, however, was that I was off the Ultram and in fact had continued with the Ativan as I was reluctant to start with two new drugs as I would be unable to determine which might be causing various side effects.

After about a week I returned to the Ultram and then also started with the Clonazepam. I have been taking 50mg of Ultram at breakfast, lunch and dinner, and then another 50 mg just before going to bed. I have been taking the Clonazepam (1mg) just before bed time. The combination and the drug holiday and the Clonazepam have been very successful and I have had four successive nights and days without pain and with undisturbed sleep at night. I have had no side effects.

I imagine that the drug holiday has been a major contributor to the success and I have noticed that taking drugs at meal times also limits any side effects. I have also observed that it is not a good idea to wait until pain or other symptoms occur before taking medication . I presume that you are familiar with these observations in other patients but wanted to pass them to you in any event.

The purpose of this communication is to keep you updated of my progress in the hope that it may be helpful to you in your research of the issue. I do however have another question and that is naturally the drug that I may take rather than Permax for my next drug holiday.

In the past I have had some success with Tylenol with codeine #3 and I could take this in place of the Ultram. Alternatively my Doctor in Denver asked whether I had any experience with Methadone, but I have not tried this Medication although the literature indicates some good success. Do you think that this may be a good alternative for a drug holiday from the Ultram for a two or three day period every two weeks. Although the literature does not appear to recommend clonazepam, I have had a very good result with it and thought that I may revert to Ativan every two weeks to take a drug holiday from the Clonazepam. Again, I would try to stagger the drug holidays and would seek guidance from the doctor treating me in Denver.

The doctor in Denver was very interested in reviewing the literature that I provided from your web site, and I believe that you are doing a great service in communicating the results of different drug therapies.

I hope you will not mind this rather extensive report back and look forward to hearing from you.

Sincerely,

Leon J K.
July 10 1997

Medical Reply

Thanks for your update. You are right about the benefit of taking the RLS medication before symptoms get significant. It is easier to prevent pain than to eliminate it once it is active. It is important to emphasis this point as often as possible.

You are also right about the importance of taking drug holidays with the sedatives and narcotics. The only point that needs further discussion is how to do the drug holidays. It is most beneficial to take a drug holiday not only from the drug itself, but the entire class of drugs. When going off Klonopin (Clonazepam), all benzodiazepines should be avoided as they all work on the same brain receptors. The same is true for the narcotics. What should be done is to increase or add other medications not in the class of the medication being stopped. This type of drug holiday may be somewhat more difficult (sometimes leading to complete loss of one to two nights of sleep), but will result in the maximum benefit from the drug holiday (maximum chance of avoiding tolerance and addiction).

Another Reply from Leon K.

Date: Sat, 12 Jul 1997 05:27:39 -0400 (EDT)
Subject: Re: Message from Leon K. 7/12/97

Thank you for your very useful comments regarding the type of drug to be taken during the drug holiday. In some earlier correspondence you mentioned taking at least a two day drug holiday every two weeks. From your experience is two days sufficient? I expect that it depends of the individual involved, but would be very interested to know if two days should be sufficient or if this should be extended for three or four days. Perhaps the answer may be to experiment but to the extent that you do have experience with the term of the drug holiday, I would be very interested to know.

I must tell you that things are going particularly well at the present with Ultram and Clonazapem. Based on your advice and rereading of the literature, Neurontin might be a good choice for a drug holiday ( I have had limited success with this in the past). I am reluctant to go back to Permax because of the side effects, but again would appreciate your suggestions as replacements fot the Ultram and Clonazapem.

Thanks again, I can't tell you how comforting it is to have someone as responsive and informed to help one through these episodes. I will try not to take advantage of your kindness. Of course I will discuss all of the proprosed treatments with my doctor in Denver.

Best regards,
Sincerely,
Leon J. K.

Medical Reply

You are right that drug holidays are somewhat of an individual issue, but there are several factors which influence the duration necessary for a successful drug holiday. The first issue is the half life of the drug used. The longer the half life, the longer the drug will remain in the body and the longer the drug holiday should be to clear the drug out of one's body. Klonopin has just about the longest half life of all the sedatives (benzodiazepines) and therefor needs the longest drug holiday (3 to 4 days instead of 2 days every 2 weeks).

Younger patients metabolize drugs more quickly and need less time off compared to older patients. After age 60 -70, adding an extra day may be helpful to allow for the decreased drug metabolism. Other drugs that may interact and increase or decrease the half life of the drug should also be considered.

Neurontin may be a good choice to help you with your drug holiday, but only if you can adjust the dose so that it helps your RLS symptoms while you are off your usual medications.

Date: Thu, 10 Jul 1997 07:49:55 -0600
Subject: Remedy That Works for Me (Oh Happy Nights!)

Dear Partners in Agony:

Two nights ago, during one of the worst episodes of RLS I've ever had, my wife suggested that I put on support hose (actually, her panty hose). I looked at her a little askance, but figured it was worth a try. Zowie! The hose gave almost instant relief! I tried it again last night with just the right leg (the one that was "restless" at the time); again, it worked beautifully.

Perhaps this remedy is old news (I just found the RLS site). But it you haven't tried it, I suggest you do so ASAP. I think you'll be pleasantly surprised.

Sincerely,

Paul H. S.
Provo, Utah

Medical Reply

Thanks for your suggestion. We have not heard that particular solution for RLS yet. I am sure many others will benefit from your innovative treatment.

Date: Thu, 10 Jul 1997 23:26:27 -0700
Subject: Medication prescribed for treatment of RLS

My doctor has prescribed Trazodone 50 mg tablets for treatment of my RLS. I started out taking 2 tablets at night and now I am taking 3 to achieve the same results. They seem to be helping so far and I haven't walked the floor at night for months now.

I am wondering if this is the right medication? I am the one that gave my doctor the information from this site on RLS and I'm still not sure he understands what I am talking about. Since starting to take this drug I seem to be tired during the day and haven't much energy. But, if this is the only option available to let me sleep and not have my legs and arms hurting all night, then I can live with it.

Could you please advise me if there is another drug which might be better and if so, I would also be interested in any expected side effects.

Thank you for your time and effort regarding this ongoing problem and any advise you might be able to offer.

Lynn J.
Yuba City CA

Medical Reply

Trazadone (Deseryl) is an antidepressant which can possibly help RLS, but has a greater chance of worsening RLS symptoms or not helping at all. It is definitely not first line therapy for RLS (first line therapy should work on a majority of patients).

Check out our web page for the Drugs used for the Treatment of RLS to review the Primary classes of first line drugs for RLS. These include the Anti-Parkinson's medication, sedatives and narcotic medication. These should be generally tried first before other medications (second line ones) are tried.

Date: Sun, 13 Jul 1997 17:58:56 -0400 (EDT)
Subject: Drug Holidays

Hi,

I have CFS (Chronic Fatigue Syndrome), FMS (Fibromyositis Syndrome), and RLS, diagnosed in that order. In fact I seemed to have developed RLS after taking anti-depressants and Flexeril to treat the FMS and depression for about 3 years. When I found out that the anti-depressants could aggravate RLS and they didn't seem to be working very well anymore, I went off all medications from Dec. 96 until Jun. 97. Going off all medications did not improve RLS, it continued to get worse, between not being able to fall asleep because of RLS and being unable to sleep because of the interrupted stage 4 sleep of CFS/RLS by June I was worse than ever before. I was unable to sleep for several days at a time then I would get 1-2 hours sleep for a couple of nights. I still work and this limited sleep made it impossible to function.

I called the National RLS Foundation and they gave me Elizabeth Tunison's number. Elizabeth gave me the address to this web page (Hi and thank you so much Elizabeth). I printed the section that discusses the drugs to treat RLS and took it to my doctor. He prescribed Ultram 50mg, 3-4 times a day. Unfortunately my insurance requires prior approval and after a month that approval has not been received and I can't afford it without insurance covering it. So I paid for 15 tablets and took 1 at bedtime, no RLS but I did not sleep soundly, I felt like I had one eye open all night and was awake enough to remember it every 1 1/2 to 2 hours.

I started taking Trazodone 50 mg along with the Ultram and I slept! Really slept!! I was so groggy and drugged out for the first 2 days that I was unable to up before 3 in the afternoon, but that went away on the 3rd day. I think it may have been that I had been sleepless for so long that I needed to catch up a little. Because of the insurance problems with Ultram, I have since been prescribed Catapres. I started with .1mg and bedtime, after a week .2mg at bedtime and starting the 3rd week .3mg at bedtime. It works well also if but I've been in enough pain during the day to take otc Motrin 400mg or get too tired or upset I still have some RLS. If it's very mild an ice pack around my legs will stop it. If it's more severe I take an Ultram (I've been really stingy with taking the ones I bought and am still hoping the insurance will approve them for me).

Since taking the Catapres I've had to increase the Trazodone from 50mg to 100mg at bedtime, if I'm to sleep soundly and I still wake up at least once each night. I would prefer to use the Catapres as my primary med, even if/when the Ultram is approved by my insurance, as long as the Catapress is effective. The reasons being Ultram is a pain med and: 1. my doc says I can use it for my severe pain days (fortunately they are very infrequent, and usually Flexeril controls the pain, but sometimes...) ; 2. I can not tolerate Codiene, Vicodin or Percodan, so I don't want to risk not being able to tolerate Ultram, or take it so much that it becomes ineffective for pain relieve; 3. even though it's not likely I don't want to risk getting addicted to Ultram or any other drug.

Now finally to my question. You talk about drug holidays, to assure continued effectiveness of the RLS drugs, How often and for how long do I need to stop taking Catapres? Can I take the Ultram during those times, assuming that I only use them infrequently as a supplement to the Catapres and pain control? Also I know this is not RLS related but do I need to take drug holidays from Trazodone? If so how frequently and for how long? Also is there an alternate drug I could take while I'm off Trazodone?

By the way, my doc gave me a 10 day trail of Ambien. It did not relieve the RLS, I still slept very lightly and was wake every hour or so. It did make me very groggy and cranky while I was awake. My doctor and I are not comfortable with me taking anything that is addictive or requires ever higher doses.

Thank you so much for your time, attention, and all the work you put into this web page, it has been a GOD send for me.

Cathy S.

Medical Reply

There is no drug holiday necessary with either Trazodone (Deseryl) or Clonidine (Catapress). These drugs do not have any addictive or tolerance potential and thus there is no need for drug holidays.

Your use of Ultram is fine. As long as you use the Ultram only when necessary, you should have no trouble with addiction or tolerance to the Ultram.

Let us know how you do.

Date: Sun, 13 Jul 1997 14:42:59 -0700
Subject: RLS I guess I've always had RLS. As a child my mother would stay up with me all night rubbing my legs, because they hurt so bad. She said it was growing pains and for several years it did not bother me. I am now 35 and over the past 5 years it has gotten worse.

I notice a relation between not feeling well, ie, infection , thyroid problems, fatigue and the amount of trouble I have with my legs. I thought I was crazy, but now I know that other people suffer from this too.

I have not found anything that works. I just tell my legs (mentally) to STOP, LAY STILL, and in 10-15 mins I drift off to sleep. Of course this is not 100% effective either, but it does work 75% of the time.

ladyhawk

Date: Wed, 16 Jul 1997 21:01:27 -0400 (EDT)
Subject: RESTLESS LEG SYNDROME

I am a 39 year old male & my wife is a 35 year old .We both deal with this unbelievable torture. I have RLS only in right leg . My wife/ on the other hand, has it in both legs .Could this just be a coincidence ?

I am recently on Valium 5 mg and it helps only if I take the medication just at bed time. My problem started 6 weeks ago and for my wife Barb it has been three years. She suffers so much and loses so much sleep. PLEASE help us in what to do.

My wife is recently taking Computer Network Specialist and she needs all the sleep she can get. She is recently on Tylenol.

Thank you very mush for listing.
BRENT R.

Medical Reply

Your wife and you both having RLS is definetely a coincidence. RLS is a reasonably common condition, at least 5% of the population. It would be similar to you and your wife having diabetes.

Please read over our RLS Drug web page and seek out a qualified sleep specialist to help treat both of you. There is an excellent chance of obtaining relief with proper treatment.

Date: Thu, 17 Jul 97 12:58:23 Eastern Daylight Time
Subject: RLS

I have had RLS since I was 8 yrs. old. I am now 31 yrs. old and still have it. The only thing that seems to give me some relief is regular asprin. I take two tablets at night (1/2 hr before bed). Usually this does the trick. However in the last year t! his problem is staring to occur in my arms now, and the asprin doesn't seem to work as well.

Any suggestions?

RGB

Medical Reply

Look over the Drug Treatment page on our web site for further suggestions of treatment as the options are many. RLS often will travel from the legs to the arms (and even other muscles in the body).

Date: Sat, 19 Jul 1997 22:07:49 -0400 (EDT)
Subject: head jerking

I have RLS and PLMD. I have read all that I can find on the subject but have not read about head jerking. This recently started with me. I have practically given myself whiplash.

This as you can imagine is very painful too. Please let me know if I'm alone on this one.

Thank you,
Debbie

Medical Reply

You are not alone. PLMD can occur in most muscle groups and the neck muscles are no exception. We have already heard of several cases similar to your problem of head jerking.

Date: Mon, 21 Jul 1997 03:34:04 -0400 (EDT)
Subject: Creepy, crawly legs

Until a few months ago, I had no idea that this was an actual condition. I've had problems with it off and on for several years (I'm 28) though nothing nearly as awful as some of the stories described here.

Consumer reports had a small piece on RLS in which they suggested that poor circulation, too much caffeine and Iron deficiency can contribute to this problem (all of which certainly describe me). I've also noticed that Ibuprofen and Naproxen aggravate it quite a bit (for me, more that one dose in a two to three day period).

I'm specifically interested in OTC remedies that are not mood or mind altering, as I am 'recovering' (there's another one for the Alcoholic Gene Theory).

Good luck everyone!
Rae

Medical Reply

Check our web page, both letters from patients and our Drug Treatment page for more info on OTC remedies. There are still several classes of medications that have no addictive potential, so you should not hesitate to get medical help and use appropriate prescription medication.

Date: Mon, 21 Jul 1997 18:39:41 -0400 (EDT)
Subject: Restless legs

I am 38 year old female who has suffered from RLS since I can remember. Up until 8 years ago I thought there was something drastically wrong (mainly mentally) because of this infliction. Then my mother just happened to mention that her legs were driving her crazy the previous night and we ended up getting into a deep discussion about it.

She also thought she was wacko thus never bringing up the subject herself. It can be very lonely trying to figure out what is wrong with you but too ashamed to tell anyone! My mother finally mentioned it to her doctor, last week, and he has put her on Darvocet. She said she'd tell me how it goes, as I really hate taking any pills. After reading several articles on the internet it has made me apprehensive to try this drug. I also told my mother that I have lived with this for so long I can't imagine life without it. Pretty sad eh?

Medical Reply

Darvocet is a very mild pain pill. It is in the narcotic class of medications, but is the least potent one, with the least potential for addiction. It is always best to avoid prescription medication if other means are helpful, but in your case, and perhaps your mother's case, this medication should be used if it works.

Date: Tue, 22 Jul 1997 00:55:47 -0400 (EDT)
Subject: whole body restlessness

I've had something similar to restless legs syndrome for twenty years. Initially diagnosed as similar to nocturnal myoclonus, I have been treated at both the Mayo clinic, Dr. Hauri, and in Mpls. by Dr. Mahowald, both excellent experts in the field of sleeping disorders. I've tried most of the standard drug medications starting with Klonopin which worked magically well for about two years and am now taking a combination of methadone and one of the benzodiazepines. I switch around in order to avoid developing resistances. Many drugs have worked for a short time but then have had to be switched. I've been in the combination mode now for several years with " generally satisfactory" results. I'm still often up most of the night but the opiate drugs relax the body so that even though I may not sleep I can at least relax in bed without going crazy.

The symptoms for me are more of a whole body restlessness or agitation and are not normally localized to just the legs. I have been confused about this because virtually all of the clinical literature and anecdotal reports focus on the legs as the primary body parts undergoing pain or restlessness. Has anyone else experienced this more generalized restlessness agitation? I've also tried several nontraditional approaches as I would love to find a non pharmacological solution but so far no amount of biofeedback, acupuncture, green algae, various other herbal remedies, rolfing, hypnotism etc. have worked.

I have wondered about the relationship between pain and RLS. Why is it that many of the medications that work are pain medications? I had an experience of severely burning my foot on the hot sands of the Dead Sea last summer in Israel and for some reason had the most restorative sleep that night and daytime alertness the day following I have had in years.

I worry about the side affects of memory loss that seems to be impacted by the medications and the sleep deprivation. Since leaving my job I am able to sleep in often and find I get an extra two or three hours that way because sleep comes better after 4 or 5 AM for some reason. Thanks for providing this forum for sharing experiences and possible solutions. I would welcome any comments.

Medical Reply

Although most people call RLS, Restless Legs Syndrome, we tend to call it Restless Limb Syndrome. We have many cases that have all limbs involved (some have only the upper limbs invovled). We also have many other muscle groups such as neck, back, chest, abdominal wall, etc. Your feelings are less usual, but certainly not unique.

Date: Tue, 22 Jul 1997 22:46:11 -0400
Subject: Strress related to RLS

Hi;

I have finally convinced my doctor that being up all night with the desire to go for a jog, is not normal. Needless to say, RLS was discussed. We are hoping that an unbelievable amount of stress has brought this about.

I was wondering if stress is one of the more common causes of RLS. I also am unable to work because of CFS (Chronic Fatigue Syndrome) and also an immune problem. I live in St. Catharines, Ontario, Canada and am in the middle of separating from my husband. If you have any information that you feel I would benefit from I would really appreciate all your help.
Thanking you for your help.
Lyse K.

Medical Reply

Stress does not cause RLS, but it can certainly make it worse. You should be able to get treatment which will help you sleep and control your RLS symptoms.

Good luck.

Date: Wed, 23 Jul 1997 08:44:30 -0400 (EDT)
Subject: RLS

While resting, I have suffered the feeling of a dull ache in my legs and the irresistable urge to get up and walk since I was very young. I remember complaining as a child that "my legs were bothering me". I even mentioned it to the family doctor as a teen.

One day, in frustration, I jumped up when "my legs were bothering me" and began to walk around, stretching my legs. All at once, my knees "popped", just like knuckles cracking! This provided instant relief! Now everytime I feel "that" sensation in my legs, I stand-up and snap my legs stiff and pop my knees. It works everytime!

I have tried popping my knees when my legs are feeling fine, and I cannot. I don't know if popping my knees will cause problems later in life, but I feel that it is better than taking medication. I am a 35 year old female, and so far suffer no side affects from popping my knees. Maybe this solution will help others. At least it might be worth looking into as to why knee popping provides such relief.

Medical Reply

We have no idea why "knee popping" should help what sound like RLS problems. But then, we do not know much if anything about the cause of RLS or why many of the more traditional treatments work. Thanks for your letter and treatment description.

Date: Thu, 24 Jul 1997 21:40:05 -0400 (EDT)
Subject: My experiences with RLS

I am a 37-year old female and after suffering from this ailment for the past 5-6 years, I can remember back to when I was a young teenager and having the problem, it usually hit me when I was babysitting and sitting in front of the TV relaxing. I finally went to my doctor (an internal medicine specialist) after going for around 3 weeks without a decent night's sleep. I thought that I was going to lose my mind from lack of sleep. She prescribed at various times, several types of antidepressants, which never seemed to give me relief. Finally, she sent me to a sleep-disorder specialist. He prescribed Sinemet, Klonopin (0.5 mg) and Permax (all a different times, of course, when one drug wouldn't work, he would try another one).

Finally, I had some dental work done and was prescribed Vicodin for the pain and it was the first time in months that I had a good night's sleep. He would not prescribe it for me, so he sent me back to my Internist. Since I had followed all of the treatments that both doctors had tried, she prescribed the Vicodin for me. I take it in the evening about 1 hour before bed along with 1 mg of Ativan, and I am also on Zoloft (100 mg) after being diagnosed with Depression (I wonder why?).

The symptoms started coming back a few weeks ago and I went back to see her and she prescribed Klonopin (0.5 mg to start, building up to 2 mg after 15 days) because she felt that the sleep doctor didn't have me on a high enough dosage. For the last two weeks, I haven't had a twinge of RLS and it has been wonderful. What is really wonderful is having a doctor that is willing to try and help me with this ailment. She calls me her "case" and she doesn't mind prescribing the different medications for me to try and has even been doing some research on her own. She has given me back my life and for that I am thankful, because for a while there, I wasn't sure that I would have a normal life again.

I've been through the hot bath regimen (my roommate wondered why our water bill was so high, some nights I took 2 or 3), walking the floor, playing games on the computer, having to leave a movie theatre during a good movie because I could not sit still long enough to enjoy the movie and the usher wouldn't let me stand in the back of the theatre. Another thing that seemed to help me when the meds didn't was the use of an infrared heated massager, they can be purchased at the drug store and the combination of the infrared heat and vibration seems to give relief.

Anyway, there is hope for RLS sufferers, it may take time, frustration and finding that right physician to get the results that I am now getting, but it's worth it, if you can just hang in there.

I hope this is of some help to someone, as I have had to do most of this on my own without any support, I just recently found the RLS Cyberspace list server and have met many sufferers and gotten into some interesting chats. Much luck to all of you and good sleep!!!

Jodi J.

Date: Sat, 26 Jul 1997 17:04:48 -0700
Subject: Restless Legs Syndrome herbal help?

Good Afternoon,

My RLS is minuscule compared to what I have been reading at your web site. However, the one thing that I have noticed, in regards to therapy, is there has been no reference to natural/herbal remedies. I feel quite sure there must be an herb out there that would be beneficial, just as St. John's Wort, which is now being used to replace Prozac for some people that suffer from depression.

Could someone address this issue for me? I would be very interested in knowing if any research has been done in the herbal arena. Very sincerely,
Barbara B.

Medical Reply

There has not been any research on herbal remedies for RLS as of yet (at least no significant studies that I have seen published in the medical journals).

Most herbal remedies that are touted to be helpful, seem to work in only a very few RLS patients with inconsistent results. It is likely that if any herbal remedy was good enough for many RLS patients, that the word would get around and the clinical researchers would be testing it.

Date: Sat, 26 Jul 1997 18:06:02 -0400
Subject: restless leg syndrome

Hi, my name is Terri. Boy have I had problems! I didn't know what was wrong with me. I explained to my family doctor, but he thought I was describing charlie horses! I finally had an idea to video what was happening to me. I did- finally got results.

My doctor watched and then sent me to a Sleep Disorder Center. I was definitely diagnosed with RLS- which I had never heard of before. I have been getting worse during the past 2 years and quite often feel like a freak. I do everything that has been written as far as trying- something so easy for everyone else- just trying to go to sleep. My husband does understand so that helps, though he can't ever know what I go through.

I have been on Klonopin, Percocet, and everything else--I think. I don't get enough sleep, then go to work, try to nap when I get home and can sleep for about 1 hour pretty good but then it's all over. Same at night-- I am so tired by bedtime, around 10, fall asleep about 11 and darned if I'm not awake at about 12:30. I read, even take a shower, do stretch exercises, and curse myself up and down. It's so hard to go through this and there is nothing I can do about it, Apparently no one can.

I have just been introduced to the computer by my friend and she pulled up RLS for me (my daughter helped also). I hate to know there are so many people with the same thing I have, I sure wish there were a cure. Right now I am back on Percocet and am also taking Sinemet, I don't think I'm to take them together, the Sinemet didn't work by itself when prescribed so my doctor put me back on Percocet. Anyway, for right now it helps though I really feel tired during the day.

I've jabbered enough- oh, no one ever has had RLS in our family before which I think is strange according to reports of it being hereditary. Oh well, now that I know where to get more information and be able to chat to others with this same disease.

I'll talk to you later.
Terri

Medical Reply

Sounds like your RLS is of the more difficult type to control. There are still lots of RLS medications to consider, and yes they can be used together. It is very typical to use several drugs together to control difficult RLS patients. If Sinemet does not help you at low dose, you may want to consider Permax. Check out our treatment page and discuss it with your doctor to help you achieve more relief from your RLS problems.

It is not too surprising that no one else in your family has RLS, in that only 50% of RLS cases are hereditary.

Subject: RLS sufferer no more!
Date: Thu, 31 Jul 1997 11:39:01 -0700

If you remember me, I emailed you 2 or 3 times back in June when I was first diagnosed of having RLS, actually geralized (from toe to my scalp). I had the RLS continuously for 3 days and 3 nights then. My Neurologist prescribed me SINEMET CR 50-200mg., but I never started it. Instead of taking the drug, I started myself on LECITHIN 1200mg softgel and still taking it every night. I have not felt any sensations since I started taking Lecithin. Do you think this supplement has really something to do with it? Plus, I believe, a lot of prayers made it go away!

I wish all the sufferers their well being and best of health!
I know it feels, for I've been there!

Thank you!

Lynn R.

Medical Response

I am not sure why Lecithin should help you. There is no medical literature on this topic. If it works for you, definetely continue the Lecithin. We will post your letter which may be of benefit for others.

Date: Fri, 1 Aug 1997 17:58:57 -0400 (EDT)
Subject: Typical RLS Symptoms & "Tremors" in Left Foot

On the 7/10/97 NBC Today Show, Dr. Arnot was interviewed regarding a new (that day) drug called Pramipexole (Mirapex). Dr. Arnot said that "this new drug goes right to the receptor of the brain that dopamine turns on to give you smooth movement." He said that they expect a 20% improvement in Parkinson Patients' movements and will prevent the progression of Parkinsons. Has this drug (Pramipexole/Mirapex) been recognized be the "RLS Medical Staff" and will it be tried out on RLS Patience; What's the opinion regarding the drug's effectiveness against RLS?

Now regarding my "RLS Symptoms":
I have had RLS for a while with "strange" but not quite painful sensations in my left foot/lower leg. A noticeable low-frequency "tremor" started in my big toe/left foot.

Now, when RLS takes hold, the "not quite painful" sensations seem to irritatingly surge to a peak, regress, and surge to a peak in cycles. Eventually (and sometimes quickly) the peaks increase in severity reaching a "painful threshold" and actually cause my foot/leg to jump, then subside until the next cycle. I take medication and eventually it subsides and I loose notice of it (if I'm working) or I go to sleep.

Another symptom that is with me almost all the time is an evolution of the "big toe/left foot tremor". It seems like many muscles in my left foot are tingling/tremoring and most of my left foot toes involuntarily quiver. The severity of these tremors/quivers increases with the onset of an "RLS Spell" of Cycles of "Sensations" with such "Sensations" amplifying with each cycle until pain is experienced.

My Dr (Neurologist) has observed this and said that it appears to be some "inflammation" of the muscles and/or nerve endings. I am now in the early stages of Permax Treatment and am keeping my fingers crossed.

Any comments on my Symptoms and/or Pramipexole/Mirapex would be appreciated.

G1B4 in Syracuse, New York

Medical Reply

Your symptoms are not too unusual for RLS patients. Permax is a good drug, but you might have to go to higher levels to get full relief.

Mirapex is new Parkinsonian drug. I have seen no reports on its use in RLS yet, but I am sure it is being tried. As it works on the same neurotransmitters as does Sinemet and Permax, it should end up being helpful for a lot of RLS patients.

We did have another similar question about a month ago, if you wish to check our previous letters.

Date: Fri, 01 Aug 1997 19:15:20 -0400
Subject: exercise

I have a severe case of RLS that came on suddenly, but I now realize I had it all my life. What I want to know is, should I be walking for exercise? It starts in the afternoon some days, there are times I wish I were dead. The doctor is working on a regimen of meds for me, but slow going. What do you think about having the Varicose Veins injected? I've been thinking about it... I need sleep.

Thanks,
Jeanette E.M.

Medical Reply

Your symptoms are not too unusual for RLS patients. Permax is a good drug, but you might have to go to higher levels to get full relief.

Mirapex is new Parkinsonian drug. I have seen no reports on its use in RLS yet, but I am sure it is being tried. As it works on the same neurotransmitters as Sinemet and Permax, it should end up being helpful for a lot of RLS patients.

We did have another similar question about a month ago, if you wish to check our previous letters.

Subject: Restless Leg Syndrome
Date: Fri, 01 Aug 97 19:22:51 -0500

2 years ago, I lost both my kidneys to cancer. I had, prior to this, mild RLS, but now it is unbearable. My Dialysis Doctors have no suggestions. Does anyone out there have the same circumstances and symptoms, and any ideas for relief? Remember, U.S.A. drugs are not always available in Canada , so I would appreciate hearing from anyone in Canada with a solution for a good nights sleep.

John M.

Medical Reply

RLS associated with kidney failure/dialysis can be very difficult to treat. Most patients will get improvement with Klonopin and the other benzodiazepines, but many patients may need more help. Check out our list of medications and have your doctor try them out. Most all the drugs on our list are available in Canada.

If anyone has more specific answers, please feel free to email them to us.

Date: Sat, 2 Aug 1997 17:02:01 -0400 (EDT)
Subject: RLS

I am now taking 0.5 mg of Clonazepam at around 8 pm every night (any later than 8 pm and I will be too sleepy at work next day) and the effectiveness seems to decline from 3 weeks ago. I am thinking about increasing the dose to 1 mg but I am afraid of the effect the next morning.

I have heard about a "drug holiday" but never knew exactly what it meant. Does it mean stop taking the drug for a few days then start again? How often do I do this? Or it is a one time thing?

Please respond asap, as I am desperate....
Thank you so much for your time.

Medical Repsonse

Your problems with Klonopin are quite typical for this drug. It is a very long acting drug and causes a high incidence of daytime sleepiness the next day. We usually recommend shorter acting sedative drugs, such as Xanax which will be as effective (generally) for the RLS but cause less, if any daytime sleepiness.

Drug holidays are very important for the sedative class of medications. When a given dose of drug which has previously been effective stops being effective, you are very likely developing tolerance to the drug. If you then increase the dose of the drug, sooner or later you will develop tolerance to the higher dose and will therefor have to keep increasing the dose until even high doses of the drug will not be helpful.

Once you develop tolerance to a dose of drug that has been previously effective, you must stop the drug for a long drug holiday. This drug holiday should be for at least one or two weeks. The drug can then be started at the previous effective dose and should work like it did before.

To prevent future development of drug tolerance, regular shorter drug holidays should be instituted. The duration of the drug holiday depends on the duration that the drug stays in the body. Klonopin is a very long acting drug and would therefor need a much longer than average drug holiday (4-5 days or longer) every 2 weeks or so. Xanax, a shorter acting drug, needs a drug holiday of only 2 days every 2 weeks.

Subject: Hot Feet / RLS?
Date: Wed, 6 Aug 1997 12:47:41 -0700

Hi - I am having an increasingly frustrating problem. I cannot get to sleep at night because my feet and lower legs are so HOT! It's wierd, but it feels like a "hot tic", the heat gets worse until I move my legs, then it's gone for a minute, then it starts building up again until I HAVE to move my legs. This is driving me crazy!

It's getting worse. It used to happen only at the beginning of the night, now it's going later, into the early hours of the morning. I have tried eliminating caffeine, but to no avail. Am I suffering from RLS? The urge to move my legs at night makes me think this is a possibility.

In addition to this, I constantly jiggle my legs while sitting during the day. I could live with that, but the hot feet/legs at night are awful! Any information you can provide would be greatly appreciated.
Thanks in advance.

Jennifer K.

Medical Reply

Your description is quite typical of RLS. The "Hot Feet" sound like a minor variation of the descriptions given by other RLS patients.

Please see your local sleep doctor, or at least another local doctor who can help give you relief with proper treatment.

Date: Thu, 07 Aug 1997 16:53:43 -0600
Subject: PLMD

Many thanks for this fine web site - although I am not a California resident, I realized great benefit by reading its material, and am posting this in the hope my information may be of service to others.

I have experienced RLS symptoms most of my life - I'm a 47 year old male - but never thought of them as a problem until my recent marriage. My new wife, a light sleeper, thinks this is a problem!

I have the Periodic Limb Movement Disorder (PLMD), otherwise known as nocturnal myoclonus. My symptoms appear mainly just after I have fallen asleep, as spasmodic jerks of my left leg from the hip down. This may persist well into the night.

A few times, the jerking has started before I fell asleep, and I consciously experienced the symptoms. It feels as if an electric charge builds up in the left buttock, then discharges - a hard jerk of the leg, this cycle repeating perhaps 3 times each minute. The jerks are completely involuntary, and are uncontrollable - I cannot hold my leg still during an "event".

At my wife's urging, I've been gathering information around this, and seeking a "natural" remedy before seeing a physician and trying drugs. Factors definitely affecting the severity to which my PLMD occurs are:

- what I ate, how much, and how soon it was before bedtime. Caffeine and sugar with the meal (such as in a soft drink) contribute heavily. Overeating (being still full at bedtime) contributes. Ice cream for dessert packs a wallop.

- high stress and excessive fatigue are also contributors.

I have been relatively symptom-free for about a month - my wife says I still get an occasional twitch, but my condition has been greatly improved by:

- adding supplementary calcium (1000 mg), magnesium (500 mg), and potassium (500 mg) to my daily diet.

- eating early in the evening, drinking only water with the meal, and quitting before I'm full, ice cream only in the afternoon!

- taking a walk after dinner.

- having a cup of Yogi Bedtime tea just before retiring.

I will continue monitoring and post any new information. Hope this helps others!

Steve L.

Date: Fri, 8 Aug 1997 03:59:04 -0400 (EDT)
Subject: RLS

I am a kidney patient who is on Peritoneal Dialysis. I got the RLS since I started the dialysis. I never had it before. Need not to say how this thing drains your energy. I am a lot better now compare to 2 years ago when I had it 24 hours a day. I read some letters on the previous page that someone mentioned about cracking the knees.

Yes, I do this to release the urge to move. I also crack my toes to release. I guess, I try to move any thing that is deep inside under my skin. On a bad night, I crack my toes so much that the next morning all my toes hurt. After 3 years dealing with this, I know the best way to get released is to get up out of bed and walk or do something that keep your mind off if for about 1/2 hour. After that, I am usually able to to back to sleep for at least a couple of hours. Sometimes it comes back and sometimes it doesn't.

The key thing is you must get on your feet. If you keep lying in bed to stretch your legs hoping it'll go away, it'll never go away. If you are too tired to get out of bed, try to lie on your face down, on your stomach. This way you will get much released and might be able to fall to sleep in that position. When the feeling is gone, just turn back on your back and continue sleeping.

And notice that this RLS is related to your lower back. If you sit in a bad position that put pressure on your back, I'll trigger the RLS. Sitting in a car not straight up, sitting on your bed not flat or not completely vertical watching TV will also trigger the RLS. Eating a heavy meal will trigger it. Lack of sleep will also make it worse. It is like a "Catch 22". You can't sleep the night before because of the RLS. The next day, the RLS gets worse because you did not have enough sleep. Caffeine, pepper (hot), alcohol or anything that stimulate your brain will trigger RLS.

I am taking .5mg of Clonazepam and it works ok. I can feel it losing its effect slowly, though. I am trying to get rid of RLS without using this drug. I know I can.

Because my RLS is on and off in a few months period and it is due to something I eat to take or the way I take my medicine. Right now, I am trying to take my nephrovite at night because I remember that the RLS came back when I switched taking the nephrovite from night time to day time. Since I switched to night time (after dinner, for 3 days now), the RLS seems to be less.

That is my experience with the killer RLS. Hope it helps someone.

Date: Sun, 10 Aug 1997 09:14:30 -0400 (EDT)
Subject: RLS from pregnancy?

Can Restless Leg Syndrome result from, or be aggravated by, pregnancy? I'm in my fourth month of pregnancy and it is starting to drive me and my husband nuts. He wants to kick me back!

Linda F.

Medical Reply

RLS has a very strong association with pregnancy. In women who already have RLS, half of them will notice significant worsening. Many RLS patients will remember back to their pregnancies as the first time that they experienced RLS symptoms.

Treatment is more difficult in the pregnant patient, as we do not like to give medications if we can avoid it. Sedative medications have been used for this in pregnant patients, but you should check with your obstetrician before taking any new treatments.

It sounds as if you have more of the leg jerking problem (PLMD) rather than RLS. If that is the case, no medications treatment is advised, but rather have your husband ignore your leg kicking or sleep in a separate bed.

Date: Sun, 10 Aug 1997 01:17:30 -0400 (EDT)
Subject: More Questions

I wrote on July 13, 1997, asking about using Catapres, Ultram and Trazodone. Your response was very helpful. Now I have a few more questions.

First: I have had to increase the bedtime Trazodone to 150 mg, I'm still trying to sleep uninterrupted for several hours. Right now I sleep 2-3 hours, wake up and fall right back to sleep for another 2-3 hours. If I didn't have to get up to go to work I could do this for 12-15 hours. What I'd really like to do is sleep at least 5-6 hours uninterrupted. I gave up caffeine 7 years ago. There's nothing that I can identify that's waking me up, I just gradually realize I'm awake. I fall back asleep easily in just a few minutes. Would increasing the Trazodone help? Are there other drugs that would be better?

Second: I know that anti-depressants can aggravate RLS and in my case they definitely seem to. Right now .3mg Catapres gives complete relief, even though I'm also taking 150 mg of Trazodone. Does increasing the anti-depressants make it likely that I'll need higher doses of Catapres or other drugs to relieve the RLS?

Third: I have found that when I take Flexeril for pain do to FMS/CFS the bedtime dose of Catapres does not completely relieve the RLS. Is this unusual? When this happens I try wrapping an ice pack around my leg. If that doesn't control it I take 50mg of Ultram and get complete relief. Unfortunately sometimes it makes me groggy for most of the next day. I'm not groggy the next day every time and there is no pattern to being groggy or not groggy the next day. Am I crazy? What's happening?

Fourth: I read somewhere that NSAID suppress stage 4 sleep. Is this true? Since I read this about 2 months ago I have quit taking them. That leaves me with Tylenol as an otc pain med and I can take it or leave it in the bottle and get the same relief, none. I do have 50 mg Ultram, but I'm so drugged by it that I do not feel safe walking around my own house after I've taken one. In fact I only take one while sitting on the edge of my bed and lay down immediately. It's several hours before I feel comfortable moving around and at least 6-8 hours before I'd dare drive. Also my doctor has told me that I can not take Ultram if I take NSAID's.

Fifth: My doctor has prescribed 350mg Soma to replace the Flexeril, thinking it will not aggravate the RLS that night and it doesn't. But it makes me unable to function. I'm so drugged that I do not feel safe walking around my own house after I've taken one. In fact I only take one while sitting on the edge of my bed and lay down immediately. It's several hours before I feel comfortable moving around and at least 8 hours before I'd dare drive. I had used oct and or Flexeril to control the pain associated with FMS for at least 3 years. Giving them up in order to control RLS is self defeating if there is nothing to replace them with and still stay on my feet. I really need some suggestions, I talked to my doctor about this and he sympathetically nodded his head but made no suggestions.

I'm struggling to continue working as close to full time as possible. Without effective pain meds that I can take and still be up and able to drive it means that I miss work If I can't sleep because of RLS, I miss work. One last question, do you consider FMS, CFS or MPS symptoms of a sleep disorder?

Sincerely,

Cathy S.

Medical Reply

We can answer some of your questions generally, but of course we cannot diagnose and treat by email.

Increasing Trazodone for sleep is tricky and may indeed cause worsening of RLS. This is a very individual effect, but certainly the worsening of RLS with any drug may cause you to need more medication to control the symptoms.

The interaction of Flexeril and Catapress for RLS is not documented in the medical literature, so I cannot answer that question. You however may be groggy from all the superimposed medications that you are taking together.

As far as we know there is no effect by Non Steroidal Anti-Inflammatory Drugs (NSAID) on stages of sleep. Also, I know of no interaction of Ultram with the NSAID's (nor is it noted in the PDR).

Fibromyositis (FMS) and Chronic Fatigue Syndrome (CFC) are conditions of unknown causes. It has been postulated that they occur due to a decrease in stages 3 and 4 deep sleep, but that has not been proven, and thus remains as just a theory. Sleep specialists generally do not treat FMS and CFC.

Date: 97-07-25 08:42:44 EDT
Subject: St. John's Wort for RLS

I believe I have discovered a much needed relief for my RLS !

My wife watched a TV program several days ago on the FOX News network medical show where a Dr. Holly Atkinson discussed some dietary supplement herbal extract that she said definitely helped people with anxiety and depression. My wife thought it may work for my RLS, so she bought a bottle. I don't have either of those two problems but it is supposed to relax people. Since I did take Valium which was used to relax me she thought it may help me. She thought we should give it a try. It worked!

My wife purchased a bottle of it and I have used it for the last two nights and it has worked wonders !!!

The name is " ST. JOHN'S WORT. POSITIVE MOOD ENHANCER." It was on sale in a large grocery store ( Meijers) and found also in health food stores. Comes in a plastic bottle with sixty tablets of 300 mg. She paid $7.99 but is regularly $9.99. Worth every penny if it can do the job !

Ingredients are: "Standardized St. John's Wort extract (.3% Hypericin) (Hypericum Perforatum) (Fruit) 300mg"
Other ingredients are:

"Microcrystaline cellulose, stearic acid, vegetable stearine, silica, magnesium stearate, vegetable glaze."

It was recommended "to be taken in place of Prosaic for anxiety and depression. The doctor said it had good side effects."

WARNING ON BOTTLE LABEL:

" Do not take with MAO inhibitors, Ephedra ( Ma Huang) or red wine. May make you more sensitive to sunlight. Please consult your doctor before taking. You must consult your doctor if you have been diagnosed with any mental condition or disease."

The stated amount was three tablets per day for anxiety and depression. I take one pill an hour before bedtime. It has allowed me to sleep through both nights without waking up and walking around for up to an hour. I also massage my calves before getting into bed with a wooden hand roller which relaxes my legs. I have also worn some knee-high stretch stockings most nights also. I am really pleased for my first two nights and hope it continues to do the job.

Jerry

P.S. Had a doctor's appointment before my wife found out about this dietary supplement and he didn't seem to know much about RLS and I offered him a copy of the medication list I downloaded from the Foundation and he wasn't interested in it. Said he had it. I didn't pursue it any further. Doesn't surprise me. As has been frequently stated, " Most doctors don't know much about RLS."

Date: Mon, 11 Aug 97 23:00:37 -0100

Re names for RLS. Both my father and I suffer from what we call "stretchy legs". I experiece it as a strong desire to stretch my legs. It comes on in the evening and at night. As far as I can tell, my father experiences it the same way. This does not correspond exactly with the descriptions given in your excellent support pages, but it seems close enough that I strongly suspect it is the same thing.

I find some relief by standing up and going on tiptoes, then down to flat feet and repeating say twenty times. I have also tried leaning forward so my hands are on a wall, then putting right foot forward half way to the wall so that the right knee is bent, and the left leg is straight with foot flat on the floor, and gently bending the right leg leaving the left foot flat on the floor, so the left calf is stretched (then repeating for the other leg).

Certainly I sometimes suffer during an evening meal and have to get up and walk around.

I had heard that some doctors suspected that the symptoms were psycosomatic, but I note that you do not mention that in your pages. It this just a UK doctors idea, or is it just what doctors say when they don't know, or is psycosomatic just a meaningless term?

Tim L.

Medical Reply

Unfortunately the term psychosomatic is used too often in medicine. The term is probably used with as great a frequency in the USA as it is in the UK. RLS is certainly not psychosomatic, as it is a very real disease, treated with real medications.

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