PATIENT LETTERS ON RLS SYMPTOMS AND REMEDIES - Page 3

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Date: Wed, 19 Feb 97 22:50:21 EST
Subject: RLS - how I cured mine

Hello,

I am a 38 year old male who has had RLS since I was in my teens. About two years ago I joined the exercise craze to loose weight and become fit. I bought TUNTURI STEPPER for $250. I use this stepper every morning for 40 minutes. I have lost weight and for some reason no longer have RLS at night. I do take a 99MG potassium pill before bedtime also, but believe that my RLS does not occur because I have built my legs up by stepping each day. the proof is that a couple of weeks ago I had the flu pretty bad. I could not exercise and my RLS returned. I guess I am not truly cured, but when I exercise which is every day unless I am too ill, I do not have RLS that night. I also stay away from salty foods, I believe salt gives RLS, high blood pressure, and leg cramps. Hope this helps.

Regards,

Jerry

Medical Reply

Thanks for the letter. Exercise has been known to help RLS. Usually moderate exercise is helpful, but very vigorous exercise or bursts of activity may actually worsen RLS. You clearly have found the right level of exercise to control your RLS symptoms.

Date: Sun, 2 Mar 1997 19:10:41 -0600 (CST)
Subject: RLS- What else?

I've written before and of course I'm trying medication in hopes of overcoming this haunting ailment. I'm now trying Ultram. I usually use Sinemet which is not effective for long. Besides my burning feet, my RLS pain is most severe at my ankle bones (those protruding bones at the outside of our ankles). Is there such a product similar to patches that would cool and numb that area directly? It's puzzling because it's as if there's a clock in my brain that declares the time for my pain to start. It always starts at night (approx. 11PM) and lasts till approx. 5AM. I frequently use surgical support knee-hi's when the pain starts, however, after a few hours I need to remove them because of discomfort. Truly some nights are nights of terror. But I keep positive and keep hoping. Thanks for your reply and support.

Mary

Medical Reply

There may be several things that would be helpful to relieve your RLS symptoms. Your Sinemet dose is not stated, but likely the dose could be increased or at the very least, a long acting form of Sinemet CR can be added to prolong the effects of Sinemet (this can be added to the short acting Sinemet). Ultram is a good pain medication, but trial and error may be needed to find one that more effectively relieves your RLS pain.

You have not mentioned whether or not you are taking a sedative/sleeping pill at bedtime (when your RLS starts to act up). If nothing else, taking a Xanax or Ambien to fall asleep so that you are not awake to suffer from RLS may make your life much better.

Let me know how you are doing and if we can add any other suggestions. Please discuss these suggestions with your own doctor and decide on a plan together.

Reply to the above answer

Date: Mon, 3 Mar 1997 19:21:16 -0600 (CST)

Thanks for your reply. To answer your questions. The Sinemet dose I was taking is 25/100mg. I do not take a sedative at bedtime.

However, I try not to take too many medications. I must use synthroid (.125MG) and I also take Premarin(.625MG) along with a combination of vitamins.

Tonight will be my 3rd time using Ultram. So far, it makes me feel lightheaded and relaxed but the pain returns during the night. I believe that I'm my physician's first patient with RLS and it's been a learning lesson for the both of us. However, he has become more aware of this condition and cooperates with my suggestions. He preferred trying Ultram over Neurontin first.

I'm able to fall asleep, however when my feet start to burn, I wake up and need to walk about and most of the night becomes a series of waking and sleeping at 1 1/2 to 2 hour intervals. Once again, thanks for your help.

Mary

Medical Reply

There is no concern of interaction with your usual maintenance medications. Ultram is a good choice, but you may need more than one per night. Other pain medications such as Vicodin and Tylenol with codeine may work as well or better than Ultram.

Give your present medication regimen a try for a little longer, but adding extra medication (sleeping pills) at low to medium dose may give you a lot of help with little side effects.

Also Sinemet CR may be very helpful to get through the night, or taking a second 25/100 when waking up at night.

Another response from Mary

Date: Thu, 06 Mar 1997 13:22:54 -0600
Subject: RLS - again - Mary

Thanks for your reply. I sent you another response but you may not have received it. My Sinemet dose is 25/100. I only take half a tablet because the whole tablet lasts as long as the whole table. I'm on long term synthroid .125 (5 X's a week & .1 (2 X's a week). I also take Premarin .625 daily. I tried Ultram for the first time this week for 5 nights but caused constipation (more discomfort) and it didn't reduce the pain in my ankles nor the burning feet and I still woke every 1 1/2 to 2 hours. Thank God I don't have PLMS. I believe that I'm my doctor's only RLS patient and he's cooperating & trying to help. You didn't answer my question - Is there a product or patch available that could be used locally to reduce the ankle pain? My pain is almost always during the night. Only during travel or if weather is very damp do I have daytime discomfort. I appreciate your advise and look forward to your reply. Thanks again. Mary

Medical Reply

There is no patch or medication that can be applied locally to give you relief (that I know of). Although the pain/burning feels as if it occurs on the surface of the leg, it is more likely coming from the inside (nerves, muscle, etc.). This is why external preparations (for example Ben Gay for muscle pain) help only for a few minutes or not at all.

Ultram and most pain/narcotic medications can cause constipation as a side effect.

It is also typical that the RLS discomfort comes only at rest...hence the worsening for you at night and when traveling.

Date: Mon, 03 Mar 1997 18:19:33 -0800
Subject: sleepiness

My restless legs are very slight compared to what most people have to go through. I have been able to get relief with leg massage/pounding and even with some sexual stimulation, but later on in the night I wake up again with the same leg tingling feeling.

However, I would still wake up tired and could still fall asleep while sitting listening to my students read and I have to fight falling asleep while driving 15 home each afternoon.

I now take one 300 mg pill of Neurontin and I get to sleep okay and do not wake up tingly anymore.

But I still am sleepy during the day, but not as badly as before.
I do not have narcolepsy, apnea or excessive PLM.

Any ideas on the sleepiness?

Thanks,

Bill

Medical Reply

The sleepiness can only be caused by RLS if the RLS is keeping you up at night and thus preventing an adequate amount of sleep at night. Since you state that on the Neurontin you sleep the entire night, one must then assume that the quality of sleep is a problem.

This could be caused by several things. The most likely is that you have PLMD during the night to a degree that you are not aware of (this is usually the case in many patients with PLMD). The PLMD might need a sleep study for correct diagnosis. This problem can be treated easily with sedative medication.

Other common causes would include sleep apnea, but that would also need a sleep study for proper diagnosis.

You should check with a sleep specialist to see what further investigation is needed to diagnose the cause of your excessive daytime sleepiness.

Date: Wed, 5 Mar 1997 02:29:43 -0500 (EST)
Subject: RLS

I first noticed RLS when I was taking rohipinol that a friend had gotten in Mexico for recreational reasons. It is now called the date rape drug. I did not "get off" to the drug, would feel sleepy, get in bed and starting noticing the RLS. I stopped taking it immediately. Unfortunately RLS didn't go away. I was wondering if anyone else has ever noticed such a connection.

I am getting help now from a physician and doing great.

Medical Reply

Your experience is not unusual. Something often "triggers" the RLS problem and then it does not seem to want to go away.

Date: Tue, 04 Mar 1997 22:25:04 -0800
Subject: Ultram

I find these drugs very interesting; however, I have heard there are some medications that should not be taken with Ultram. I don't see that in your info.???

Medical Reply

Ultram is actually a fairly safe drug as far as drug interactions are concerned. Compared with most drugs it has very few significant effects on other drugs or is it affected by many drugs.

In fact there are only two interactions known.

(1) Tegretol (Carbmazepine), if taken with Ultram will cause a decrease in the metabolism of the Ultram. Therefore, the dose of Ultram may have to be increased to get the same clinical effect.

(2) Quinidine (a heart medication to control irregular heart beats) can cause an increase in the Ultram blood levels. The clinical effect of this is not well known yet.

Date: Thu, 06 Mar 1997 17:17:01 -0500
Subject: RLS in NY

I have RLS but I live in Corning NY. Are there any support groups around here? I don't have it every night. It seems to come in groups of two or more nights. It is also worse when I'm taking antihistamines or any sleep inducing drug. My legs kick and my arms are also affected. Hope you can help me with a closer group.

Howland

Medical Reply

You can find a list of the RLS support groups on the RLS Foundation Inc. web page. You can link to their web site from our web site or go directly their list of support groups in the United States.

Date: Sat, 8 Mar 1997 13:08:12 -0500 (EST)
Subject: RLS - "growing pains at 50"

I chose your site on the RLS page because you made it so easy to do so. Please bear with me while I vent some frustration.

I am 50 years old, but have had what may be RLS for as long as I can remember. I do recall my mother rubbing my legs frequently in the middle of the night to bring me relief for my 'growing pains'. When I was pregnant the 'feeling' grew worse and the time span longer. Now, after years of suffering varying degrees and at varying times of day I have discovered (to my horror) that the 'feeling' hits "both" of my legs about 10 times a week for various time lengths ( all day sometimes ). Whatever disorder I have seems to not be so bad at night as to wake me up, but if I have it prior to getting to sleep then I do lose sleep because of it.

My job requires me to be sitting at a computer terminal, and although I get up frequently, I find myself jiggling the legs for hours at a time. I've been trying to discover a place to press on my legs that would make the 'feeling' stop. If I had a special gadget or something that would massage my leg without disturbing others or just anything I could have a better life, a better future.

Is there any treatment for us poor fools that have already been through h*** with this disorder? Is there anything you know of that I may not have not heard of yet? I refuse to look at the rest of my time on this earth dreaming of ways to cut off the sensation nerves to my legs. I'm not exaggerating. The prospects of being too old to get up to rid myself of the persistent aching are just too grim.

I will read everything on your web page, but if you know of anything else - please let me know.

My local doctor just looks at me like I have made this up - IT IS REAL..... And the support group in Charlotte, NC is one person who was on vacation when I called.

Thank you for letting me bend your ear,

Paula

Medical Reply

Your letter is very typical of many patients who suffer from RLS. There is however, no reason to suffer the way you appear to be suffering. Treatment options are many and the majority of patients do very well on medication. Read through our web page for the various treatments available. Make a copy of the treatment page (Comprehensive Review of Medications used to treat RLS and PLMD) and give it to your physician with a copy of the symptoms of RLS. It may be helpful if he gets a copy of all the RLS descriptions on our web site so that he may get a better understanding of the severity and scope on this very real disease.

Good luck, and let us know how you do after you receive proper medical care.

Reply to the above medical reply

Date: Sun, 9 Mar 1997 11:36:04 -0500 (EST)
Subject: Re: RLS - "growing pains at 50"

Thank you once again. I will send any personal experience information on to you when I have it. This WEB stuff is great! I thought it was just me (absolutely no one in my family or anyone I know has this 'thing'. I will do something about it now that I can prove my case. And the sooner the better, as I have lived with this for years and although I learned to deal with it in the evening hours (usually only one leg at a time). I now have to deal with 'both legs' during the day as well, and you know that an 8 hour day can seem like 16 hours if you are MISERABLE. I've tried not to complain over the years as I do 'have' legs, and am not in what you would call 'pain', but what ever this feeling is has brought on despair for too many years!

Funny thing is, I do associate this RLS to some of the most wonderful of childhood experiences - having my mother all to myself - rubbing Balm Ben Gay on my legs - and fussing over just me (not my three other sisters). When she died last year and the RLS seemed to get worse, I started to think that maybe it was ALL IN MY HEAD!

Now that I have read all the testimonials, I feel like a part of a huge family! Miserable as we all are, there is comfort in knowing that I am not alone.

Well, I will keep in touch.

Sincerely,

Paula
Charlotte, NC

Date: Sun, 09 Mar 1997 22:05:05 -0800
Subject: restless leg syndrome

I have been diagnosed with restless leg syndrome and multiple sclerosis. Do you know if the two are related.

JoAnn

Medical Reply

We are not sure of the cause of either MS or RLS, but as far as we know there is no relationship between the 2 conditions. RLS is common enough (at least 5% of the population and possibly up to 10%) that it is not unusual for it to coincidently occur with other somewhat less common diseases.

Date: Sun, 09 Mar 1997 23:09:37 -0800
Subject: RLS

I just read your information on the internet. I didn't know anyone but me ever suffered from this!!!! I've had what I now know as RLS for twenty years. The name I've always called it is "Night Crawls". Only now my "night crawls" are starting to turn into "day crawls" as well. What or who or where should I go?

I've started taking Vitamin B6, B Complex, and Magnesium. I have a consult to see a Neurologist about a damaged nerve (unrelated) in my hand. Should I consult the Neurologist about this? I didn't think anyone could help me. Thanks for the ear.

Heidi.

P.S. from Heidi

I just mailed you my name "night crawls", and now turning into "day crawls" - but I have one more question. Does this thing that has tortured me for twenty years move? I'm beginning to feel the same sensations in my arms! I've learned to live with the legs - my husband is kind enough to massage them. Sometimes if I go to bed and they start, I'll get up and crazy as it sounds, eat cereal and milk. The full sensation relaxes my legs (not always, and it doesn't help if I haven't caught it in time). But now, the feeling is coming during the day and in my arms as well. This is prison. I have an intense fear that some day if I'm old, and not able to communicate yet still alert mentally, that I will be tortured with these "crawls" and not be able to tell anyone, not be able to have my muscles massaged and I swear that is a fate worse than death.

Heidi in New Jersey

Medical Reply

You have very eloquently described fairly classic RLS symptoms. It is very common to have symptoms in your arms as well as your legs (in fact RLS should really be called Restless Limb Syndrome).

Seeing a neurologist for RLS is a very good idea. Most neurologists should have a good idea about treating RLS, and if not you can bring in a copy of my web page outlining all the drugs used to treat RLS. You should be able to get considerable if not near complete relief with medication. If your doctor cannot achieve this, then look for a sleep specialist (board certified, if possible) who has expertise in RLS.

Let us know how you do once you get proper treatment. You should not despair as I am sure that your life will be much better in the near future.

Date: Tue, 11 Mar 1997 13:04:27 -0500
Subject: Alprazolam

I have severe restless leg syndrome. I would like more information on Alprazolam. Has it worked for other people? I belong to the RLS support group on the internet, but no one talks about this drug. I am seeing my third sleep specialist, and have been in the sleep lab ten times. The last time was February 23/24/25.

There doesn't seem to be the right medication out there for me. I'm paradoxical. Give me something to make me sleep (Halcion) and it keeps me awake. Codeine keeps me away. I can't find the right medication to help me sleep. Even those herbal sleep pills (valerian, etc) keep me awake.

I asked my doctor to prescribe Alprazolam for me. My husband takes 0.5 mg for anxiety and I have been taking a few of his pills at night and feel that if I could have a higher dosage, Alprazolam might be the answer.

My doctor doesn't want to give me a prescription until he gets the results of this latest sleep study. I have an appointment with him on March 27 to get the results from him.

Anything you can tell me about this drug really helping RLS would be appreciated.

Janetta O.
Canada

Medical Reply

Alprazolam, or Xanax, is a sedative medication similar to Valium, Ativan and even Halcion. They are all useful medications that will help most RLS patients. The fact that you did not do well with Halcion may indicate that you are at higher risk of not responding to the other medications in the sedative class. It is however still worthwhile trying other sedatives to see if they may have a better effect on your RLS.

I am not sure why you are having so many sleep studies. On most RLS patients, no sleep study, or maybe one study usually suffices to make the diagnosis (which is usually based on the typical RLS symptoms).

Xanax (Alprazolam) is on our web page, so you can look up more info there. You may also need a higher dose of Xanax, but one should always start with low doses (0.25 mg). The drug can be increased to 2 mg, but that is a rather high dose and the majority of patients with RLS can do well with less than half that dose.

Date: Sat, 15 Mar 1997 12:36:25 -0800
Subject: thanks RLS

Thanks for your reply about RLS. I've been on clonazepam for many years but it no longer works. My MD then tried nitrazepam--no good. I also have sleep apnea and use a cpap machine, but it is too hard to get to sleep. Can you help?

Derryl E.

Medical Reply

What dose of clonazepam were you taking? One can easily develop tolerance to this drug at which point higher and higher doses are needed until the drug no longer helps. I suggest drug holidays when using the sedative medications (one weekend off every 2 weeks) to keep the drug effective and avoid tolerance/dependence.

Have you tried the other classes of drugs, such as the Parkinson's disease and Narcotic medications? Check our Comprehensive review of RLS drugs to see lots of choices for treatment.

Another good choice for a bedtime sleeping medication is Ambien (zolpidem). This sleeping pill will have the least effect (of sedative medication) on your sleep apnea.

Date: Mon, 17 Mar 1997 14:31:25 -0800
Subject: Treatment that has helped

I month or so ago I sent a couple of emails when I first discovered this web site. I copied everything you had and took it all to my neurologist who luckily is familiar with Rest Legs Syndrome and has now diagnosed me officially with it, and to my former counselor. I called her because I know she had to have wondered about me when I tried to describe the "bugs crawling in my legs at night." She was really pleased to know about RLS and get the info because if it is as common as my neurologist says it is and as misdiagnosed and mistreated, I am not the last person who will be a counselee of hers!

I have continued to take .125 mg of Klonopin at night which most times controls the bugs. Sometimes I have to take another .125 but not often. I started taking .125 in the morning, too, and that has almost completely stopped the creepy feelings in my arms and shoulders!! Yea!! Now it is easier to figure out the elbow-wrist situation which is probably carpal tunnel type thing. I also started taking NeoLife's Super B Complex because I figured it couldn't hurt and might help since the B vitamins help the nervous system.

Thank you again for being there. I will be at the Southern California Support Group in May!!

-- Jane B.

Medical Reply

Nice to hear you got such good results. We are glad to hear that you will be coming to our next meeting.

Date: Fri, 21 Mar 1997 05:00:34 -0500 (EST)
Subject: Review of medications for treating RLS

Thank you for your comprehensive review of medications for treating RLS. A review of the literature indicates that medications are sometimes used in combination with one another to achieve better results. I have just started taking Ultram, and while this has significantly reduced the pain associated with RLS, I still am not able to sleep for more than about 2 hours at a time. Could I add a conventional sleep medication to the Ultram, and do you have any suggestions that I may discuss with the doctor who is treating me. I also have a history of becoming tolerant to medication after about 30 days and have read that some form of "drug holiday" may be beneficial. Could you let me know how I might avoid this drug tolerance, particularly if the Ultram proves to be effective. Again my thanks for the excellent article.

Sincerely, Leon J. K.

Medical Reply

You have asked some excellent questions. Tolerance can be a problem with the narcotic and sedative classes of medications. The best way is to take a drug holiday of at least 2 days every two weeks. We usually recommend taking a weekend off, so that if you don't sleep well, then your down time is on the weekend when being as alert is not as critical.

We very often add a second medication as you have noted. Adding a sedative is a very good idea. Ambien or Xanax are among my first choices of sedative medication to take at bedtime to help you get a full night of sleep. With the right dose you should not have any daytime sleepiness due to the sedative medication.

You may even want to take your drug holidays on each drug on alternate weekends, so that you will have some drug coverage on the off weekend of the other drug.

Good luck, and let us know how you do with your treatment.

Reply to the above Medical Reply

Date: Sat, 22 Mar 1997 19:54:56 -0500 (EST)
Subject: Re: Review of medications for treating RLS

Thank you very much for your prompt response and helpful instruction related to a "drug holiday". You indicated Ambien and Xanax could be used as sedative medications along with Ultram. I am currently taking Ativan (0.5mg) as a sedative and would be interested to know whether you have any experience with this drug and how it compares with Ambien and Xanax. I can't tell you how much I appreciated hearing from you. I certainly will let you know how my treatment progresses.

Leon J. K.

Medical Reply

Ativan is very similar to Xanax. It may last a little longer (with the potential for more morning sleepiness) and mildly slower onset of action. If it works for you, the above information is may not be relevant to you.

Later reply from Leon J. K.

Date: Mon, 9 Jun 1997 04:51:30 -0400 (EDT)
Subject: UPDATE AND REQUEST FOR HELP

The treatment with Ultram proved quite effective until early June. I had also been taking Ativan to help my condition. I had been taking Ultram (50mg three times a day, and Ativan (.5mg) once each day. Unfortunately I was unable to follow the drug holiday that you had suggested as my sleeping was so bad without the Ultram that I continued to take it, when I may have been better served by enduring the difficult weekends without it.

I now find myself in a rather difficult situation. I am on a two week road trip on the way from Florida to Denver and the last three nights have been as bad as I can recall. I have been under extensive treatment over the past six months with a variety of medications. The best results were with Ultram, but I also had success for about a month with 400 mg of Neurontin and Permax. This proved effective for only about a month. Tylenol with codeine was also effective for about a month before I built up a tolerance for it. Also I was not very comfortable taking a narcotic.

Is there a good sleep clinic in Denver? Could you perhaps refer me to someone in Denver that may be able to help. Alternatively should I be looking at a pain clinic in Denver as my symptoms are rather sever pains in my calves. Any other suggestions would be welcome as I am getting very little sleep and the nights are particularly bad. Fortunately my wife is able to do much of the driving as I will not drive when tired.

Sorry for the rather long sad tale but its about 3am and you were the only reliable source I could turn to for some common sense advice.

Sincerely ,
Leon J. K.

Medical Reply

You are indeed having trouble with your RLS and medications. The drug holidays are very important in general, and seem to be even more important in your individual case. The lack of benefit that you develop in about a month of treatment is fairly typical for the development of tolerance.

You really must take drug holidays with the sedative class (Ativan) and the pain medication class (Ultram) or you will continue to have tolerance problems. What might be a good idea is to go off only one of the medications at a time (2-3 days off Ativan one week then 2-3 days off Ultram the other week).

Permax is another good choice to use during the drug holiday periods. This should help tide you over the absence of one of the two drugs as detailed above. I am not sure why the Permax sopped working for you as tolerance does not develop with this medication. You may not have been using it correctly.

I do not think that a pain clinic would be helpful, unless they are familiar with treating RLS.

You may want to try the above treatment with the supervision of your physician. If you need to find a sleep physician in the Denver area, then check with the ASDA site in our links page. Let us know how you do.

Another Update from Leon K.

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. 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 of 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).

Date: Mon, 24 Mar 1997 11:31:19 -0800
Subject: RLS

I have written before and have since started a new medication, Pergolide 0.05mg., and 1/2 tablet at bedtime has worked wonders for me. I have had RLS for as long as I can remember, and I'm 67 now. I'm a semi-retired RN, but never told anyone about my restless legs and arms because it sounded so weird. My sleep has always been interrupted by it until I finally told my doctor, who immediately gave me an RX for Permax, and I have not suffered from those restless legs and arms since. That is, until last night, when I forgot to take it, and was ok until it woke me up. Then, as you can imagine, I took the Permax, went back to bed, actually felt my legs calm down, it's very hard to describe), and slept the rest of the night. The reason I finally talked to my doctor about it was because of your web page. Until then, neither my family nor my friends knew. I just told them I didn't sleep well at night. Now I have checked with several relatives and friends, but to my surprise none of them ever heard of RLS, and none have the symptoms. Now they're educated, though, and sympathetic to my RLS problem.

Nothing else I tried has worked. Vitamin B6, Calcium (I still take two every night), Melatonin, Valerian. I tried Halcion, but found it had a terrible rebound. I see in someone else's e-mail that they have adverse reactions to many OTC drugs, and so do I. Nyquil, most decongestants, Tylenol PM, all keep me awake, and always seemed to make the RLS worse. In any case, I am relieved, and am getting a full night's sleep almost every night, and that is a big change.

Thank you for being on the internet!!!

D. Joan M.
Joshua Tree CA

Medical Reply

Your experience is very common for RLS patients. A recent study published in the journal "SLEEP" showed that Permax (Pergolide) is actually better than Sinemet for moderate to severe RLS and most RLS sufferers will respond to this medication. It is not unusual to have many medications, including the OTC ones cause worsening of RLS symptoms.

I am very gratified that our web page was of help to you and enabled you to recognize and resolve your RLS condition.

If you are ever in Southern California, please drop in on one of our quarterly RLS support meetings.

Subject: RE: Sue G.
Date: Tue, 25 Mar 1997 08:57:44 -0500

I can fall asleep naturally, but I awake almost every hour. Sometimes I have a craving to eat carbohydrates. I can then return to sleep only to awake in another hour or so. The sleep study conducted indicated that I have leg jerks that are awaking me. I was given Sinemet and also Klonopin, neither of which worked. I have also tried, Prozac, Paxil, Serzone and Zoloft. None of these helped very much. The combination of Paxil and trazodone work but only for a few weeks. At this point I don't know what else to do.

Do you have any suggestions?

Medical Reply

Your description is compatible with Periodic Limb Movement Disorder (PLMD). Most patients with this problem will not necessarily have associated RLS. The PLMD can easily cause awakenings at night which are likely the cause of your poor sleep.

Sinemet may help, but sedative drugs are usually easier to use and get good results with PLMD. Klonopin is the drug which is usually tried first, but it is not necessarily the best drug in this class of sedatives. I suggest trying Xanax or Ambien which may yield better results without daytime sleepiness.

Let us know how you do with treatment. Good luck.

Date: Tue, 25 Mar 1997 06:31:50 +0000
Subject: RLS

Hello from San Francisco.

I have had RLS for fourteen years. It only got bad enough for medication last December. I take 1mg to 2mg of Klonopin nightly. Vitamin E 1200 iu a day helps with the RLS spaz attacks.

John V., swimmer

Date: Sat, 29 Mar 1997 10:16:39 -0600
Subject: Thank you

Thank you for putting this page up. I have had this problem for several years, and wasn't really aware of what it was.

I notice that there are not many natural remedies listed. I have found that GHB produces deep sleep & a complete relief from symptoms, but thanks to our overprotective government that must either be ordered from offshore sources or mixed from "kits". It also makes one feel wonderful upon awakening.

I am now trying GABA as a substitute, and it does work in 1,000 mg doses with valerian & kava kava. Hopefully it will continue to work over time.

David

Date: Sun, 30 Mar 1997 22:49:11 -0800 (PST)
Subject: RLS/PLMD

RLS/PLMD and My Hypothesis

I am very pleased to see your addition of Medical reply to our letters. I will highly appreciate if you can answer to following questions.

I am 50 years old. My problem is PLMD (Periodic Limb Movement Disorder), which was diagnosed after a sleep study about a year ago. I have tried Klonopin and Sinemet-CR, which worked only for a short time. Note that I have no RLS symptoms. I have never realized jerking movements of my legs during the day or even at night when I am awake.

1. Most of the time I wake up with tenseness and a mild to moderate headache -- which will turn into a full-fledged headache unless I take pain-killers (aspirin, ibuprophen, or Tylenol). I would like to know which pain-killer is the least harmful for long-term use.

2. Of course the root cause of this tenseness is disturbed sleep due to too many micro-arousals due to PLMD, without my conscious knowledge. My other problem is too many dreams. I suspect this may be due to PLMD. It seems like I go from stage 1 or stage 2 sleep into REM sleep, and then back to stage 1 sleep. I feel I am not getting stage 3 and/or stage 4 sleep (which is deep sleep). No wonder, I wake up tense and feel sleepy during the day. Is disturbed sleep associated with excessive dreams? Which medication is best for this type of PLMD without any RLS but with excessive dreams?

3. I am taking many vitamins, including B complex. I take one B-50 complex in the morning and the second B-50 complex in the evening. Do any B vitamins or any other nutrients have anything to do with dreams or with PLMD? I have known for several years that I was not getting good sleep even when I was not taking any vitamins. I am just wondering if there are certain vitamins/nutrients which can help here or may make it worse?

4. I have observed for the last several months that when I eat sour foods, which are acidic, it makes PLMD worse. I am trying to avoid them now, but it will be impossible to avoid all sour foods, (as for example tomatoes, lemon juice, vinegar, etc. -- which are ingredients in so many other foods). I wonder if my PLMD program is created by some sort of food allergy to sour foods?

5. Looking at my blood test reports for the last few years I have observed that my blood calcium level is above the normal range. The normal range is 8.4 to 10.4 milligrams/dl. My level is from 10.5 to 11.5 for different tests. This is the only parameter that is out of range for me. Also, my parathyroid hormone (PTH) is also at higher levels than normal. So I have hypercalcemia or hyper-parathyroidism. I had a PTH scan done recently, but it was negative. I am wondering if this problem has anything to do with RLS/PLMD?

6. Following is my hypothesis: The sour food is acidic. It increases the acidity of the body fluids. I have read that in the face of excess acid the body will leach calcium from the skeletal system as a buffer. This may be the cause of my higher calcium levels in my blood. Anyways, this change in pH value (due to sour foods or any other problem in the digestion system) affects some part of the brain -- which malfunctions and so results in PLMD. Can the change in pH of the blood or other body fluids affect brain function?

7. Now you will ask if it is that simple, why don't I take antacids? I have been taking calcium supplements (1200 milligrams/day), but maybe that is not enough. Recently I tried Alka-seltzer at night. Strange as it may sounds, but it works. I took two Alka-seltzer tablets in water and I slept very well. I was relaxed when I woke up the next day, a rare occurrence for me. Only one tablet didn't work. It is only a few days that I have started this experiment.

But now I am worried about sodium contents of these tablets. I am sodium-sensitive with respect to blood pressure. My blood pressure is generally staying within the normal range -- as I do restrict in-take of sodium. Is it okay to take two Alka-Seltzer tablets every night to control this problem? What are the long-term effects of using so many anti-acids with sodium? Is there any other alternative?

In short, I am saying: Excess acidity in the body (for whatever reasons) may be the root cause of my PLMD problem and also excess Calcium in blood. Eating sour food only makes it worse. Maybe this is unique for me, or maybe not. I urge all my fellow sufferers (both RLS/PLMD) to check their calcium level in the blood and also try two Alka-seltzer tablets at night and then respond.

8. What is "Bicarbonate deficiency syndrome?" Can I just take bicarbonate for acidity problems? I see bicarbonate as an ingredient in spring water bottles. Can I get bicarbonate tablets or powder? This will be very helpful to me as extra sodium that comes along with Sodium Bicarbonate in Alka-Seltzer is increasing my Blood Pressure.

Sincerely,

JJK
Richland, WA

P.S. A letter from Michael L.E.D.D.S. regarding "Remission of RLS symptoms by Enzyme Therapy" indirectly confirms my hypothesis. Enzymes will help digestion system work better. In short, it may be some problem in digestion system that can create RLS and/or PLMD. Based on my personal experience, I am saying that it may be the excess acidity.

I would request Michael to give details of his "Enzyme Therapy". Which Enzymes and which brands were used? We will all appreciate it. Please respond.

Medical Reply

To answer your general question about what to do for your PLMD problem, I will suggest the following. You should try a sedative medication such as Xanax, Ambien, Restoril, etc. This should prevent the arousals which occur from the leg jerks. Pick a dose (with your doctor) that leaves you alert in the morning.

At 50 years old, you can not expect to get a lot of stage 3 and 4 deep sleep (with or without PLMD). Most medications will either not effect REM sleep or decrease it (as with the sedatives above).

Not much is understood about the cause of PLMD. No research has yet shown any link to vitamins, acid levels or calcium levels. Melatonin may be of benefit but this also has not been studied yet for this problem.

I cannot answer your questions about your elevated calcium levels, acid/alkali intake, salt intake, etc., as these have not been proven to be linked to RLS/PLMD and thus they are beyond the scope of this web site.

I will see if we can get you some info about the enzyme therapy discussed by the dentist.

Date: Mon, 31 Mar 1997 21:21:03 -0500

I can't find Q-Vel anywhere locally. Will Mr. Bickman let me know where he obtains his supply?

Medical Reply

Q-Vel is simply a form of Quinine Sulfate. Until recently it was available without a prescription. Due to problems with side effects and abuse of this drug, it was recently put behind the counter (all forms of Quinine Sulfate) and needs an ok from a doctor or an actual prescription.

Its helpfulness in RLS is generally limited. Selected cases (like Mr. Bickman) may get good results with this medication. It does work well to prevent (but not generally relieve once present) muscle cramps, but not actual RLS symptoms.

Date: Tue, 1 Apr 1997 21:35:03 -0500 (EST)
Subject: RLS, during the daytime

I have read everything on your web site and have found it very helpful. I guess I am one of the lucky ones since I had a diagnosis within 4 weeks of first consulting a physician.

My onset was really very sudden, following a period of severe stress. Mostly the symptoms are during the daytime, arms as well as legs and even (occasionally) the face. Leg and feet cramps that I had had occasionally got worse, and my hands starting cramping. I really thought I was going crazy. Most all of the symptoms have been described by someone in the letters, mine varied all over the place. I described them to my family physician as feeling like I had stuck my finger in some blinking Christmas tree lights. I swear, I could feel the nerves firing all over my body, and some days it was almost constant. I didn't really notice them bothering my sleep, once I got to sleep, but I was very tired when morning came around.

I had learned to meditate in the past but was never very consistent about it. The first thing I did was get out my tapes (you can find them in most any big book store) and do it right before going to bed. I continue to do that now (4 months later) and I really believe it helps with the go to sleep. The neurologist made the diagnosis pretty quick from my description. I must admit I didn't really believe him at first since it was worse during the day and evening and involved more than the "legs". I have never had the urge to get up and walk.

He first tried Klonopin and had me take it as soon as I got home from work. One problem is that I have a one hour drive to work and cannot afford to be groggy when driving. The Klonopin helped but there were some mornings I was late in leaving for work because I was still foggy. After finding your web site I asked him if I could try the Xanax since it is shorter acting and you seemed to like it better. I'm still in the early stage of using it but it definitely is better in the morning. Since my biggest problem is during my drive and the daytime we are going to try using the Xanax on bad days. I have tried it before an airplane trip and it didn't seem to make me sleepy and my legs were pretty good. One thing I have noticed though, the cramping sensation in my feet and hands stopped immediately on the Klonopin, but have returned when I stopped taking it, though rarely.

In retrospect I have probably had mild symptoms for some time. Severe leg cramps when I was pregnant many years ago. Off and on periods (usually stressful) when I didn't sleep well and felt tired.

I know this is long so I'll get to a my main question. What is your best experience in treating the daytime symptoms. I really feel the Xanax is better overall, but have been very cautious in taking it and driving. He gave me the smallest dosage and said to experiment with it. Also, what are your thoughts on stress and RLS.

Thanks again for the great service.

Jo W.

Medical Reply

I generally prefer not to use sedatives in the daytime in patients who need to be alert to drive or work. What I do recommend is an anti-Parkinson's disease medication such as Sinemet or Permax. Sinemet usually works well for mild RLS, but Permax is also a good choice if Sinemet is not helpful.

The analgesic medications (Tylenol with Codeine, Vicodin, etc.) work well but also have the problem of potential drowsiness. Some patients can take these medications without problems of impairing daytime performance.

Neurontin is another choice which does not cause daytime problems with sleepiness and often works well (if the Parkinson's disease medications do not work).

Stress does seem to worsen RLS in many (most?) patients. Xanax may help you, in addition to its RLS effect, in that it also reduces the effect of stress on people.

Date: Wed, 02 Apr 1997 10:55:54 -0800
Subject: "alternative" therapies for RLS

I came across this site by accident on a brief lunch-break search for RLS info. I live in Portland, Oregon, am a white male, 42 years old, sufferer with RLS since about 1986. I am a professional scientist and know something about the scientific method, so I have a pretty critical view of all claims of wonder therapies.

I am getting noticeable relief from my symptoms for the first time ever thanks to treatment from a Chinese-medicine practitioner. The treatment has combined acupuncture and herbal medicine (the latter a mixture of several herbs...I don't have the names at hand.) This treatment is not a panacea--I still have occasional problems, which are exacerbated if I am under a lot of stress and/or not getting enough rest and exercise, in which case the RLS turns from primarily a night-time problem to an all-day problem. Nonetheless, the Chinese-medicine approach is the ONLY treatment that has proven helpful. I am presently on a trial run of sorts to see whether the herbal medicine by itself, without acupuncture, is effective. (Unfortunately my medical insurance refuses to cover acupuncture.)

I found Western medicine pretty useless in searching for relief. A sleep therapist at a Seattle clinic told me in 1987 to "just live with it". I tried another sleep clinic at the medical school here in Portland in 1994 and was prescribed Sinemet, which gave marginal relief at the cost of nasty side effects--my entire body ached constantly, and the MDs told me that problem would only get worse if the dosage were increased enough to be more efficacious. The MDs then suggested I try a benzodiazepine-type drug. I declined owing to the likelihood of becoming habituated to the drug (a decision my family doctor supported--he told me he had a family member with RLS who had become habituated in just this fashion).

Between my sleep-clinic excursions and finding the Chinese-medicine practitioner, I had also consulted with another doctor (a D.O. I see about orthopedic problems). Things he suggested but which did not help included quinine and vitamin E. This D.O. was actually the first to suggest acupuncture to me.

Joe W.

Medical Reply

Your problems with RLS are actually quite common as you may have noticed from the letters. Many non-conventional therapies are often successful in selected cases such as yours. Acupuncture is harmless and benefits many patients with all kinds of different problems. Its success in RLS has been variable.

Even though you tried Sinemet without much help and unpleasant side effects, you may still want to try another Parkinson's medication, Permax (Pergolide). It tends to have fewer side effects and is more effective for moderate to severe RLS.

Although you are quite right about the concerns with addiction to Benzodiazepines, if taken properly this problem can be avoided. Taking just the smallest dose to overcome symptoms and taking a drug holiday (one weekend every 2 weeks) generally will prevent tolerance and dependence on the drug. Ambien, a new non-benzodiazepine sedative works well in RLS and has no addictive qualities.

I would consider adding some of the above medication on an as needed basis to your RLS regimen.

Quinine has had very little success in RLS. I know of no benefit of Vitamin E in RLS.

Date: Thu, 3 Apr 1997 21:16:51 -0600
Subject: My RLS Experience

My legs have been bothering me for about 15 years. I'm a 44 year old male. My legs and ankles get 'jumpy' as I get sleepy later in the day. Based on what I hear of other sufferers, mine is a mild case. I've often wondered if this is some type of food allergy because it seems to vary with me a lot. Sometimes I can go for a week or 10 days with nothing and then get a horrible night.

I've tried stretching, walking, squeezing, freezing, massaging and over the counter medications with varying results. Q-vel, Leg-a-trim and quinine sulfate (can't get that anymore) all seem to work sometimes.

Now the good news! Since I've found this info on the 'net, I'm trying vitamin B and C and Calcium, Magnesium and Zinc seem to work well!!! Take a couple of pills an hour before bed and so far so good. But I don't think I'll ever take a chance on drinking Mountain Dew again.

Best Wishes to ALL,

- Rich G.

Medical Reply

Thanks for the letter. Mountain Dew has lots of caffeine, which is not known to most people. Caffeine can easily cause worsening of RLS symptoms.

RLS symptoms may vary quite a lot so it is difficult to correlate your symptoms with eating and other activities.

Date: Sun, 06 Apr 1997 11:06:11 -0400
Subject: RLS VS AMBIEN

Hello. Finally I found that I am not crazy after 45 years! Just went to my physician Friday. He heard of RLS and referred me to see a Neurologist which I will make an appointment. Told him I had relieve using Vicodin HP at night and once in the afternoon. He said, "Oh no, it is addicting, so he prescribed Ambien. Well, within 15 minutes my legs were jumping for joy (not mine) and all of a sudden I had ten people (knights in armor) in my home. I kept trying to make them leave but they wouldn't. I wouldn't stay in bed. My poor husband!

Well, today I am crying, a physical, mental wreck and called the Dr. He would not even get on the phone, his nurse spoke with my husband. My husband requested the Vicodin HP till we see the neurologist because we knew THAT worked. Still refused. Ambien is very expensive $58 for 25. I just blew a Drs. visit and $58 on medication. Am waiting to see what he is prescribing. I am so fed up. I am a former nurse, I know what medications can be addicting and if used and monitored properly one will have no problems. That's why they are out there. Can any body help me? Our insurance company has two neurologist that are participating but they are so far away. I am 51 years old, have a full time job and raise two grandchildren (toddlers) in the pm (eight hours). I need my sanity from my legs. I can stand all my life and take hot showers. People at work look at me as if I am crazy. Jiggling around all day. I tell them if they think daytime is bad, they should see me at home at night!

There are no support groups in New Jersey either. Oh, my husband just came back with one 1mg tab of Buspar three times a day. Never heard of it. Will let you know.

thanks for letting me vent.

Doreen S.
Piscataway, NJ

Medical Reply

Ambien is often a very helpful medication for RLS. Unfortunately it does not work in your case. Vicodin is a good choice and if taken correctly should not cause addiction (just enough to relieve 90%) of your RLS symptoms). Show your physician a copy of our web page on Narcotics detailing the use and safety of these agents in RLS.

Consider adding Sinemet or Permax, which should reduce your need for Vicodin, and help your RLS in general.

Let us know how you do with treatment.

Return letter from Doreen S.

Date: Mon, 14 Apr 1997 17:27:09 -0400
Subject: Re: RLS VS AMBIEN

Thank you for your reply. I went to see a neurologist last week and he prescribed Klonopin .5 mg bid. It is ok during the day but not enough in the evening or at night. My arms are starting to bother me when in bed. I see him on April 24. Will let you know how I make out. You are the only one who has contacted me. I appreciate it so much. Please do not stop. If I can ever be any support to you or others, just let me know.

Doreen S.

Medical Reply

Nighttime is usually worse for most RLS patients. Therefore it is not unusual to need more medication for RLS in the evening/night. You may need more Klonopin at night, or add Permax or Sinemet.

Let me know how you do.

Date: Tue, 08 Apr 1997 14:57:55 -0400
Subject: Night Sweats?

Hi, I just ran across your web site -- it's great! I have the same feeling in my legs many people are describing along with the constant fatigue and an uncontrollable twitch in my foot. I didn't notice anyone complaining of night sweats though. Are they common to PLM's? I wake up drenched and shivering two or three times a night. Angi C.
Alexandria, VA

Medical Reply

Night sweats are not a part of RLS (as far as I know). Night sweats can be due to other diseases (please check with your own doctor). Mild night sweats are not too uncommon, and no cause is often found.

Date: Tue, 8 Apr 1997 20:55:35 -0400 (EDT)
Subject: help!!!! for restless legs

We need help!! We cannot find any physician in and around this area (St. Cloud Minnesota) to help with my husband's restless legs. He's got to where he cannot sleep because of his legs. We went down to the Sleep Disorder Center at Mayo and all they wanted to do was wonder if he had sleep apnea and said if he couldn't sleep, it was a one night shot and they wouldn't be able to help.

Our family physician won't do anything more until a specialist says what to do. He has him on 2 Darvocet a day intermittently and Neurontin, which doesn't help in the least. I understand that they have to test for other disorders, but when he just sits to try to read, watch TV, etc. the legs act up. Even if we have documentation from various places (including internet/articles from library, etc.) they don't want to do anything or can't do anything or something. Where do we go?

Shirley V.

Medical Reply

A sleep study may be of marginal benefit to further define your RLS condition. It sounds like your RLS problem is well enough established that it can be easily treated without a sleep study.

It is too bad that your local physician will not treat your RLS using our web page (we have gotten many responses from patients who have been able to get their family M.D. to treat them by referencing our web page on RLS drugs). Since he will not treat you, you must find a sleep specialist (or often a neurologist may feel comfortable enough to treat RLS) who will treat you. Treatment often requires some trial and error and adjustment of doses, so you should be able to get to your treating physician easily.

For a list of sleep specialists call or log onto to the ASDA (American Sleep Disorder Association). There is a link to the ASDA on our web site.

Good luck, and let us know how you are doing in the future.

Date: Tue, 08 Apr 1997 23:15:59 -0700
Subject: Rx Combo's

I recently tried Sinemet it seemed to stop the big twitching in my legs, but did nothing for curing the creepy crawlies.

Then I tried Ambien 10mg and boy did it knock me out cold! My wife, however, says it didn't stop the PLM.

Soooo, I tried BOTH and Voila. It's been working for a month now and I get almost all the way through the night without waking.

My question is how safe is it to take these two meds together long term? Should I do occasional drug holidays one at a time or both and go cold turkey?

Any better ideas on what to combine Ambien with? I'm not convinced Sinemet is the best to go with it. How's about Neurontin and Ambien?

Thanks for comments,
Gregg

PS- Keep those calves tightly wrapped with 6" Ace bandages; they're the best tool I've got going so far.

Medical Reply

It is very common for patients to be on Sinemet and Ambien (or other sedative drug) for long periods of time without any problems. If taken correctly these medications can be extremely safe and effective.

I am not sure that your should continue taking Sinemet, if you thought it made you worse, rather then better. There are lots of other drugs (Permax, Neurontin, for example) that may help instead.

Although the literature claims that there is no addiction, dependence or tolerance to Ambien, I would suggest a drug holiday of 2 days every 2 weeks to assure the continued effectiveness of the drug.

Sedative drugs, such as Ambien do not always stop the leg jerking of PLMD. They do prevent the arousals from the leg jerks and thus let you get a good night of sleep (despite the fact that the leg jerks may bother yours spouse).

Date: Fri, 11 Apr 97 10:05:21 UT
Subject: Restless Leg Syndrome

My daughter who is 26 years old has suffered off and on for several years from Restless Leg Syndrome. I read the list of prescription drugs that can be used for treating this condition. Are there any over-the-counter drugs that will help alleviate the symptoms? Right now, she's having a bout with the condition and her nights are miserable. She's about to make a major life change and I suspect this is contributing to her suffering.

I would appreciate any further info you can provide.

Sincerely,
Pat Wilkinson

Medical Reply

Sorry to say, but there are no over the counter medications that consistently and effectively alleviate the RLS symptoms. There are however, lots of non-prescription drugs that have helped sporadic individuals. These drugs have not been tested in any studies to see how well they work on the majority of RLS sufferers, but our experience has been that a small percentage of patients will get some benefit.

For more information on these over the counter remedies, please see our web page (the section of letters of RLS Complaints and Remedies).

If these over the counter drugs do not help your daughter, have her try the standard prescription medication with the aid of an appropriate doctor.

Date: Tue, 8 Apr 1997 23:13:16 -0400 (EDT)
Subject: TREATMENT FOR RLS

CAN ANYONE COMMENT ON WHAT CAUSTICUM OR RHUS TOX IS? THANKS.

E. REED

Medical Reply

We know nothing about these things, but will post it on our web site to see if anyone else does.

Subject: Restless Stomach
Date: Sun, 13 Apr 1997 21:53:07 -0700

I have all the symptoms of RLS except it's not my legs, it's my stomach. My father may have restless legs (as reported by my mother).

I doubt there is such a thing as 'Restless Stomach Syndrome' so I would feel right at home with the 'leg' crowd.

Rick P.

Medical Reply

Tell me a little more about what your symptoms are of your "Restless Stomach" ? Do you mean that your abdominal wall muscles are restless or something else?

Rick's Reply to above

Date: Sun, 20 Apr 97 19:12:56 UT
Subject: RE: Restless Stomach

Congratulations (and thank you), you are the first person ever (including many GP MDs) to say "tell me a little more". It's refreshing to say the least.

I'm 48 and in excellent health. I've had the 'stomach' problem since about age 10. My profession is industrial software and automation. I've had all the upper and lower GI tests, x-rays, ultrasound, etc. It's not heartburn, gas, acid or irritable bowel (at least treatment for these has been completely ineffective).

My symptoms:
Extremely aggravating abdominal discomfort in the vicinity of the navel. It's so aggravating that I want to punch myself in the stomach. Gets worse and more frequent with age. Most likely to occur between 8pm and 2am. Will only occur while sitting or laying down. Takes 10-15 minutes to reach peak level of aggravation. Lasts 2-4 hours then tapers off within 10 minutes. Prevents sleep. Any physical movement such as getting up or turning over gives instant relief. However, it returns within a minute or so after motion stops. Comes and goes in cycles. Sometimes no problems for days or weeks. If I'm calm, relaxed and happy it gets worse. If I'm traveling, or under stress, no problems.

General:
Strong tendency to swing my crossed leg while sitting. Usually must have something in my hands to 'fiddle' with.

Family:
My fathers legs would 'run' in his sleep according to my mom. My mother and one of my cousins on her side have epilepsy. My mothers mother died very suddenly and prematurely of a brain tumor.

Zoloft:
I've been taking Zoloft for about 2 years. Related symptoms that are now gone due to taking Zoloft: Evening fatigue (sometimes to severe to drive). Inability to relax in the evenings (visit, watch TV or read) due to stomach aggravation. Occasional mild depression for no reason.

Things that have helped only a little or for only a short time:

Zoloft provided full relief after only 2 days and lasted 2 months. The next several weeks brought increasing discomfort back to previous levels.

Simethicone 30-60 minutes before bedtime worked well for a few months even though I didn't have gas or bloating. It had to be 150mg, Maalox brand, and had to be taken before the symptoms began. Other brands wouldn't work. Weird.

I recently had influenza and noticed no stomach problems during that week. I traced the relief to the cough suppressant I used containing Dextromethorphan Hydrobromide 30 mg. After this discovery I started taking it in tablet form before bedtime to get relief from the abdominal attacks. It worked perfectly for 2 months even though I didn't take it every day. Now, I'd have to take two tablets to get relief which is an overdose and makes it hard to get up in the morning.

Summary
I've believed for a long time that the problem is a chemical imbalance or some other anomaly in my brain. I don't share this opinion with the doctors because they are the pros and, after all, what do I know about it. However, I'm beginning to think that maybe I do know more about it than any of the GPs I've seen.

The list and discussion of RLS medications is very intriguing. I look forward to the possibility of some long term relief. I'm still concerned that my GP may not be of much help even if he becomes more aware of RLS.

Rick P.

Medical Reply

Thanks for your description of your stomach problem. It is hard to say whether or not you have "restless stomach" disorder or some other problem. Restless Legs Syndrome often occurs in the arms/shoulders, but I have not yet heard of the abdominal wall being involved (although that certainly does not preclude it). As it is very difficult for RLS patients to describe their symptoms, it would be even harder to decide if your symptoms match the typical RLS complaints, although some of your descriptions are quite similar.

Abdominal pains/discomforts are very difficult for most physicians to sort out anyway, and yours are even more so. A short trial of some RLS medication may be helpful. I would suggest a trial of a short acting sedative such as Xanax or Ambien (in low dose). This might have some diagnostic benefits, although even in RLS patients the benefits can be quite variable with any RLS treatment (that's why there are so many different drugs for treatment.

Good luck.

Date: Tue, 15 Apr 1997 14:36:24 -0400 (EDT)

I can't tell you how happy I was to find out about you. My doctor told me that this is my problem, Restless Leg Syndrome, I thought he was crazy. I came home after seeing him and told my husband. He somewhat chuckled and laughed. I told him I didn't believe it myself, but the doctor said this is common with sleep disorders. My doctor told me about this RLS Foundation, I had to find out for myself. Since this, I stay up so late trying to find out more information to satisfy my mind. I thought I was going crazy. My symptoms this week seem to be like my bones hurt, and as if my legs and wrists seem as if they have fallen asleep and I need to stretch them.

I can't tell you have comforting this is to have found you. Just to know someone will listen and kind of know what I am talking about. Please send me whatever information you feel I might need, or have.

Thank you,
Cindy

Date: Fri, 18 Apr 1997 00:12:30 -0400 (EDT)
Subject: Enzyme treatment for RLS symptoms

Sometime ago I posted a letter here regarding enzyme treatment for RLS symptom relief. I was purposely brief, but have received so many inquiries regarding the enzyme therapy I feel compelled to write and explain the theory and process of the enzyme therapy.

1. Our bodies and every function associated with it are accomplished by chemical reactions. Thoughts, bodily movements, breathing, attitude, etc. are really nothing more than a series of chemical reactions occurring in specific sequences. Every chemical reaction we experience is driven and or associated with a metabolic enzyme. There are more than 100,000 chemical reactions occurring in every cell at any given moment. Again these reactions are "catalyzed" so to speak by a specific enzyme.
2. Our bodies basically produce and release two types of enzymes. Metabolic enzymes and digestive enzymes. Digestive enzymes do exactly what the name implies, they assist in the digestion and assimilation of nutrients. Metabolic enzymes as explained previously drive the chemical reactions that make our bodies well, allow us to heal from disease, and repair and regenerate tissue and organs in need of such.
3. We are all born with a limited supply of enzymes, both digestive and metabolic. This is often called an enzyme potential which basically means one's body can only produce so much of any given enzyme and there are thousands of metabolic enzymes) be they metabolic or digestive enzymes. A lack of one or more metabolic enzymes is currently thought to be a primary cause of illness. If one's body can produce the necessary metabolic enzymes, the same body can "heal itself". The trick is allowing one's body to produce the necessary metabolic enzyme.
4. The catch is this. Digestion always takes precedence over metabolism in the sense of enzyme production and release. In other words, unless one eats foods rich in natural digestive enzymes which are basically present in all uncooked foods) our bodies have to work overtime to produce the digestive enzymes necessary for digestion of the cooked food we all eat. Heating of food denatures (destroys)) the natural enzymes contained in the food. A person who eats raw fruits and vegetables on a regular, routine basis is in less need of digestive enzyme supplements than one who eats only cooked foods. We were basically designed to eat raw foods only. However, that is obviously not the case. An interesting case in point is the fact that Eskimos commonly eat uncooked meats and blubber and yet have no evidence or heart disease or atherosclerosis. The reason is simple, the uncooked foods contain the necessary digestive enzymes to digest those raw foods.
5. So unless one is willing to eat only raw foods rich in natural digestive enzymes, one's body is constantly overworking to produce digestive enzymes and in doing so diminishes the bodies production and release of metabolic enzymes. And remember metabolic enzymes are those which help our bodies repair, regenerate, and heal. They do so through the natural process that fights off disease.
6. The theory on the alleviation of RLS symptoms by digestive enzyme therapy is quite simple. By taking supplemental digestive enzymes, one allows their body to release and produce the metabolic enzymes necessary to achieve true health.
7. I very inadvertently came across the RLS relief by giving my mother digestive enzymes to assist her in some general health issues. We never anticipated relief of the RLS, and in fact never thought of it. However, after approximately 3 to 4 weeks of taking the digestive enzymes, my mother called me one morning and casually informed me that she had slept through the night for the first time in years. As I considered the issue I came to this conclusion. It is my own and not supported by any documentation other than the accepted theories of metabolic and digestive enzyme interaction. My mother's RLS was/is caused by a neurologic or muscular series of chemical reaction gone awry. In other words, there are a series of chemical reactions that need to occur to prevent the RLS and my mom was lacking one or more metabolic enzymes that caused this "disease". When my mom had taken the digestive enzymes for a period of time adequate for her own body, she began to produce the necessary metabolic enzyme that lead to a "normal series" of chemical reactions or better classified I think as the appropriate healthy set of chemical reactions.
8. RLS is a disease just like any other. Current "alternative" sort of medical theory says one's body can heal itself if given the opportunity to do so. However our diet does not allow us to do so and consequently as we age and begin to seriously deplete our enzyme levels, illness and death are the eventual outcomes. There have been well documented studies of rats given supplemental digestive enzymes vs. rats that were not, and the supplemented rats lived an average of 30% longer with much improved health.
9. Bill (the wonderful lady responsible for this web site) has ask me if the addition of digestive enzymes to ones regimen can help arthritis, and the answer is a qualified yes. Arthritis, like RLS, like cancer are diseases where one's own body has not been able to "fight off" the disease. Theoretically, the addition of digestive enzymes to ones daily health regimen should allow the body to begin to produce and release those metabolic enzymes lacking that have lead to the disease.
10. Are digestive enzymes the answer to every problem and disease? Absolutely not, however the addition the enzymes to one's life can only provide benefit and the possibility of better health and longer life.
11. I am a dentist by profession and when I first heard the theories of enzymes, I was more than skeptical, but I have personally found the results to be as I've said before miraculous in some to moderate in others. However, not a single person who has started the supplements has given them up. If they have attempted to do so, they inevitably return once they discover they just don't feel as good without them.
12. These enzymes are not drugs in any manner shape or form. They are simply plant enzymes cultured and grown in sterile conditions for maximum effectiveness.
13. There are 3 basic products, and a vast array of supplemental products for more specific problems. I have had several people ask me to just give them one product, but in good conscious I cannot do that. I have significant doubts one would experience any benefit from a single product. The basic three products work in unison with each other and I doubt one would receive much if any benefit from trying to "pick and choose". This approach is one of total health through the bodies proven ability to heal itself.
14. I can be reached at Kelmore580@aol.com for further questions.
15. I have hesitated posting such a specific letter for fear that people would think this a sales approach that I would personally find distasteful. However, again I have been approached by so many people, I think this is the more efficient way to disseminate the information.
16. I don't suffer from RLS and I truly feel for those who do. I have heard my mom complain for years about the problem, and until I read the letter here, I had no idea the problem was this prevalent or severe.

My best wishes to all for some alleviation and help of this most distressing ailment.

Mike Elmore DDS

Medical Reply

The above approach is quite interesting. The enzyme theory is however just a theory and has not undergone rigorous medical scrutiny for effectiveness. It might be a reasonable treatment for RLS, but until it has passed double blinded medical trials (which show statistically significant results), it can not be recommended by RLS doctors as part of the accepted treatment for RLS.

Date: Fri, 18 Apr 1997 12:22:56 -0400
Subject: Acupuncture?

I'm running out of ideas to alleviate the symptoms of RLS. I need a good night's sleep!! Has anyone ever tried acupuncture?

Pat

Medical Reply

Acupuncture and acupressure have been tried with some limited success. Most patients will get some minor relief that is short lived, and a few will get long lasting improvement in RLS symptoms. Only a trial of this method can determine whether or not it will help you.

Most patients can get significant relief with the RLS medications listed on our Comprehensive Review of Drugs used to Treat RLS. Check with your doctor to treat you according to our guidelines on the web page and you should do much better.

> Date: Tue, 22 Apr 1997 22:34:40 -0700
Subject: RLS

I am a female, 56, and the past few years it has been getting much worse. It has even started in my arms. To try to sleep I get on the floor and rest my head on my pillow, with whichever arm is bothering me and put the arm under me as I am lying on my stomach. It seems to put the arm to sleep and then I can go to sleep. I have tried taking aspirin and it works some of the time, but not always. I have a heart condition, so I have to be very careful what I take. Also, I am not one to take a lot of medicine.

My father, sister, daughter and grandson also have this problem. My grandson is now 14 and has had it for a number of years.

Also, when traveling, I put my foot on the dash or windshield to put a lot of pressure on my leg so that it will get numb. I also have used a belt to tie up the calf of my leg to try to numb it so that it would stop bothering me. Things like this sound crazy, but when I cannot do some things I manage to come up with other strange ideas so I can rest.

I do wish that there was someone here in Houston that would even talk to me about it. My heart doctor just thinks I am being funny when I talk to him about it! If there is a doctor here in the Houston area I would be more than glad to see him. I have even thought of acupuncture and may eventually go that route! Has anyone ever done that? I thank you for your "listening" and hope that someone knows of a doctor here in Houston.

A very concerned person.

Medical Reply

Check out our link to the support groups around the country to find one close to you. In addition, you can check our link to the ASDA to find the name of a sleep specialist near you.

Most of the medication is quite safe for patients with heart conditions. You should probably consider using the RLS drugs in order to get better relief of your RLS symptoms.

Date: Sun, 20 Apr 1997 23:01:39 -0400
Subject: RLS AND METHADONE

I just can not believe my eyes. There is actually someone else with this crazy problem in our legs. I have told every doctor that I have ever seen about this problem and they all just look at me and shrug their shoulders. This cursed problem I feel is responsible for a life of drug addiction for me. I have used narcotics e.g. Percodan, heroin, laritene, morphine...you name it. For the last 3 years I have been on a methadone program and have not experienced RLS in all that time. I am now withdrawing from methadone and am at a very low dose and guess what? It's back with a vengeance. I haven't slept well for the past 3 weeks.

THANK GOD I HAVE FOUND THIS WEB SITE!!!!!!
I have often described this problem as like having pure anxiety injected into my feet and legs. Hopefully, with some of the treatments described on this site I will find some sleep. My name is Wayne. I am a 42 yr old male.
London, Ontario, Canada

Medical Reply

Good luck with treatment for your RLS condition. I would stay away from the narcotic drugs in your case. They work very well for RLS as you have already found, but your chance of addiction is clearly too high to risk using this class of medication. I would suggest that you have your physician try prescribing the Parkinson's medication for your problem.

Date: Thu, 24 Apr 1997 11:26:32 -0400
Subject: Southern California RLS Web Page

Last week, I read a posting by someone calling his symptoms "abdominal RLS" who went on to describe paresthesia of the abdominal skin. You replied that had not run into that exact complaint before. I also can get periumbilical, paramedian or flank paresthesia which at times feel like a needle stick. These last about a minute but typically herald the onset of lower extremity RLS symptoms within the next ten minutes. I also can get sharp, painful paresthesia in my fingertips and toes of a fleeting nature that do not have the same significance as to subsequent typical RLS symptoms as the abdominal wall paresthesia do. I am currently controlled by pergolide after four good years with Sinemet. Augmentation and upper extremity involvement led me to switch drugs. I don't remember having the paresthesia prior to Sinemet therapy. This could be part of the augmentation or just the maturing of RLS. They have not decreased after three years of pergolide, but they also have not become any worse. Just another aspect of the whole RLS riddle.

All the best,

Richard L. L.

Medical Reply

Thanks for the letter. If anyone else reading this letter has similar abdominal complaints/symptoms then please write to us so that everyone can learn more about this problem.

Date: Tue, 6 May 1997 12:37:33 -0500 (CDT)
Subject: RLS of course-from Mary

Hi Folks, I've had RLS for approx. 16 years but didn't know till about 7 years ago. I was given Sinemet 100/125 and avoid taking it on a daily basis. When I do use this drug, it's because I'm extremely tired or experiencing more burning than I can tolerate. Also I'll indulge in only half a tablet (the effects of half a dose lasts as long as a whole dose - so why take more?).

I exercise consistently (I mentioned this in previous letters to you) this helps me maintain my endurance, strength, sense of well being, etc. as well as sanity (wishful thinking), maintain a normal weight and eat nutritionally.

However, most recently, upon the advise of a doctor friend, tried applying Zostrix, the strongest capsacin dose. I have found that using it 2 to 3X's a day helped to lessen the usual nightly burning sensation. Using 3 to 4X's for me was too much. This product may not be a cure-all but it appears to be helping and any little bit of help is always a gift from God. If it works for me, it may work for other victims of RLS. At least, it won't worsen your condition and you won't be gambling with another oral medication. I certainly hope that this tip will benefit others.

Always With The Best of Wishes,
Mary

Date: Fri, 09 May 1997 20:17:24 -0600
Subject: restless legs

I just found this site while searching for information to help my dad. I had no idea there were this many people suffering from RLS. You gave me fantastic insight into what he has been enduring. He is 83 years old and has had RLS for at least 2 years. It is hard to take any medication because of what he takes for his heart condition. I am mailing for your brochure. Thank you!

Medical Reply

Even at 83 years old there are lots of medications that would help despite your fathers heart condition. The sedative class of medication is usually the easiest to start with, but even the narcotic agents will work well and safely. The trick with patients in their 80's is to start with very low doses of medication and try to keep the final doses as low as possible. Older people do not metabolize drugs as quickly (or as well) as younger patients and therefore can build up toxic levels more readily.

Date: Fri, 9 May 1997 07:25:16 -0400
Subject: RLS

Hi! I've written before with my horrific experience with Ambien. Finally saw that neurologist. In fact just had my third visit. I am on 1 mg of Klonopin during the day and 1.5 mg at bedtime. If I need .5 in the PM I can also take that (I usually don't because I have to drive and care for my two small grandchildren). I get relief and am happier than I have been. My doctor refused to prescribe Vicodin HP when he knows it works better than anything else. I suggested taking the Klonopin in the daytime and at bedtime the Vicodin. Oh No! You will get addicted.

I also found that when I went in for an office visit (lasted 3 minutes and $90)all he would say is how are the legs? See you in two weeks. Well, last night I decided I had better find another doctor. You see, the previous week he told me he had patients on as much as 20 mg Klonopin. Last night he said that I was on 2 1/2 a day and that was too much. I might get withdrawal symptoms. I asked how do I get withdrawal symptoms if I don't stop it?

My husband's prescription plan requires a RX for a 6 month supply and sends your meds once a month (when you send in the coupon and money). This doctor went off the wall. So I said, "When do you want to see me again?" His reply was, "I don't need too." My reply, "Do I come in when my RX runs out since you refuse to give me the RX for 6 months." He said, "If you feel you need to."

Am I nuts or is this Dr. nuts. He sits down in the office while he makes you stand. I think I need another Dr. Anybody out there agree?

The Klonopin works fine but my sleep in not restful. When I took the Vicodin HP at one time my sleep was much restful. Any opinions??

Thanks,
Doreen
Medical Reply

Sounds like you have had some very unusual experience with doctors. Klonopin is tolerated by some patients in the daytime without much sleepiness, but most patients cannot take much if any Klonopin without experiencing daytime impairment.

Vicodin is a very good drug for RLS. If taken to relieve 90% of the RLS symptoms, it is unusual to get addicted to it. You might wonder why we worry about addiction if you are taking Vicodin everyday anyway. If used in doses more than just to relieve RLS, sooner or later increased doses will be needed and lower or higher doses will become ineffective. Another way to keep the Vicodin effective and potent, is to take a drug holiday of 2 days of the medication every 2 weeks or so.

In addition, you have not tried Sinemet or Permax (anti-Parkinson's disease medication) which can be very helpful for controlling RLS symptoms.

You should find a physician who can help you use the right medication which should give you excellent relief.

Good luck, and let us know how you are doing.

Date: Sun, 11 May 1997 10:09:55 -0500
Subject: Nightly leg movements

I would like to know the causes to RLS.

It was only on a whim that I looked up sleeping disorders on the internet and found that what I had been doing since my earliest memory is a disorder. I find I can not even go to sleep now without the slow steady movement of my left leg. I am aware that it gets more violent as the night progresses. Yet, I have never felt any pain to start this movement or neither have I ever felt fatigued during the day.

My husband has teased me since he first saw me sleeping and the idea that it is an actual illness is hard for me to believe.

Wendy

Medical Reply

From your description, it sounds as if you have PLMD (Periodic Limb Movement Disorder). Many people who have this leg jerking problem may have no actual complaints other than their bed partner's complaints. Calling PLMD an illness implies that you are having significant difficulties due to PLMD which are causing you to be not well (such as interrupted sleep which would make you sleepy during the daytime) and feel ill. In your case, with just mild leg jerks and no other negative results, calling PLMD an illness would be inappropriate. It is however, a disorder (defined as a abnormal condition that occurs in only a small percentage of the population) which occurs in about 5% of the population.

There are many patients who have PLMD who have very interrupted sleep and complain and suffer of very significant daytime sleepiness as a result. The patients with superimposed RLS sometimes have such severe problems that they even consider suicide as a way to relieve their symptoms. The term illness definitely applies to those patients. Luckily you are not in that category.

The cause of PLMD is unknown except when it associated with another disorder (such as kidney failure). Most people who have PLMD have the type that is of unknown cause and not associated with an other disorder.

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

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 3.
http://www.rlshelp.org/rlscomp3.htm
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