Patient letters on RLS symptoms and remedies- Page 42


Kicking RLS/PLMD Patient

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



Sent: Wednesday, June 26, 2002 8:36 AM
Subject: RLS drug interaction

I have been taking generic Actifed  for my allergies for about 30 years and it works well. I recently heard about antihistamines'  possible affect on my RLS which I have had for 35 years. Since my RLS isn't always every night I hadn't seen a connection before.  

I have had almost nightly problems in the last few weeks so I laid off my Actifed for three nights (taking it only in the morning) and  I didn't have any RLS problems. The next night I was itching so badly that I couldn't sleep so I took some Benadryl and of course then couldn't sleep for half the night because of RLS. 

What antihistamine do you suggest to control my sneezing and itching that won't make my RLS worse?

Medical Reply

Almost all antihistamines will cause RLS to worsen.  The best chance you have is with the newer non-sedating ones (Claritin, Clarinex, and Allegra) which do not cross into the brain and may thus effect RLS very little if at all (about 1/2 of RLS patients can take these without problems).
Another better idea is to take one of the prescription nasal sprays (Nasonex, Rhinocort, Flonase, etc.) on a regular basis which may solve your problem without affecting RLS.

Sent: Monday, July 01, 2002 12:24 AM
Subject: RLS question

It seems that the Prometrium that I take for hormone replacement therapy has exacerbated my RLS symptoms.  When I was taking Activella, which has a different progesterone, I did not have this problem.  However, because Activella worsened my migraines, I had to change to .025 estradiol patch and the Prometrium 100 mg daily.  I'm discouraged as the new regimen was helping menopause symptoms.

Any word on Prometrium?
Sheila in Denver

Medical Reply

Hormones will sometimes affect RLS and both estrogen (estradiol) and progesterone (Prometrium) may cause problems in some patients (likely a minority of RLS sufferers).  You may have to consider a different hormone or consider RLS therapy.

A Reply from Sheila

Eliminating the Prometrium dramatically reduced the RLS.  I still twitch a little before going to sleep, but I'm able to fall asleep in about 20 minutes and not awaken till morning.  How deeply I'm sleeping is hard to guess. I'm usually a little tired since this menopause thing.  I'm still taking a tiny bit of estradiol for other reasons and I'm reluctant to discontinue. 

After consulting with family doctor, I am eliminating the Prometrium to see if that was the case.  If I still have it, I'll eliminate the estradiol and see the effect.  Then I'll consider RLS therapy.  


Sent: Tuesday, July 02, 2002 4:02 PM
Subject: Elavil

I am writing you again for some information.  I have seen my doctor twice, along with several phone calls, but we seem not to see "eye to eye".  She first put me on Sinemet.  I have told her about the side effects etc etc. etc and asked for Mirapex or Requip.  She does not want to prescribe these because as she says, "You do not have Parkinson's" and she does not want to request my HMO to approve it. 

My last visit she decided on Elavil.  Since I had not been prepared to discuss this drug with her I took the prescription.  After doing some research on it I really DO NOT want to take this either.  What is your opinion on Elavil?  or any antidepressant?



Medical Reply

Elavil will generally make RLS much worse.  An occasional patient will improve with Elavil, but this is the exception not the rule.  Most of the antidepressants tend to worsen RLS, but some of the newer ones have a small chance of helping RLS.  My guess is that 60% of RLS sufferers will worsen with the newer antidepressants, 20% will be unaffected and 20% will improve.
Sinemet is a Parkinson's disease drug as are Mirapex and Requip.  I generally have little or no trouble prescribing these medications for my HMO patients.  The problem is that these are newer medications and most physicians are not familiar with them and thus quite uncomfortable prescribing them.
You may have to ask for a referral to a neurologist or better yet to a sleep specialist to get appropriate care if your primary care doctor is not able or willing to treat you appropriately.

Sent: Thursday, July 04, 2002 3:54 AM
Subject: sugar/carbohydrate connection

It is 3:50 a.m. and I am looking for relief of RLS, still, after 40+ years.  No need to describe my symptoms but to say they are EXTREME and are affecting my quality of life.  Suffice it to say that my creepy crawly feelings extend up from my legs to the trunk of my body and I feel as though I could explode!  Unfortunately, I don't, which keeps me at that heightened state all night. 

Seems even worse when I eat even the tiniest bit of carbs.  Sugar, potatoes, pasta, etc. send me over the top.  And it's the same for my 3 daughters.  Have you found any correlation between RLS and carbohydrates?  And why does Ambien work some nights and other nights the RLS keeps breaking through, robbing me of sleep and sanity. 

Carolyn C

Medical Reply

t is not understood at all why some foods (such as carbohydrates in your case) seem to worsen RLS.  This happens in a minority of RLS sufferers, but is common enough.  The foods may vary and for some reason, ice cream seems to be one of the most common foods that affect RLS.
Ambien has no effect on RLS other than to put you to sleep so you are no longer aware of the RLS.  If the RLS is more severe (or you can't fall asleep for other reasons such as stress) then it will seem as if the Ambien is not working.

Sent: Thursday, July 04, 2002 9:12 AM
Subject: Mirapex Use

I am a 72 year old male and have had RLS & PLMD for ten years. Based on information from your web sight which I shared with my family doctor, I started using Mirapex ten months ago - once a day one half hour before bed. I used .125 mg for five days, then increased to .25 mg for three months, then .5 mg for three months and then .75 mg for four months.

Last week I started using 1.0 mg once a day. Prior to the use of Mirapex I was unable to sleep more than an hour at a time and my life revolved around trying to get enough rest to function. The Mirapex has made it possible for me to enjoy a nearly normal life style. I can sleep six solid hours every night. I do have RLS during the day but normal activities mask the problem. I increase the dosage when the RLS becomes so severe during the day that no activities can not be performed because I have to jump around.

You have mentioned that Mirapex can be taken during the day if necessary. Would I be better off taking say .5 mg three or four times a day rather than take 1.0 mg once a day?

Thank you very much,.    

Medical Reply

The dose of Mirapex should be individualized, with the aim of finding the smallest dose that relieves the RLS symptoms.  It is better to take the Mirapex before symptoms occur, rather than trying to relieve the symptoms after they are present (often 1-2 hours before symptoms may occur such as going to sleep or going to a movie).
A dose of Mirapex generally lasts 4-8 hours, so taking doses earlier in the day mainly helps the daytime problems, not the nighttime symptoms.  Once you find the lowest dose that works to relieve your RLS problems, there is no need to increase the dose. 
I generally increase the dose by .125 mg rather than .25 mg.  If you are treating your daytime RLS, increasing the nighttime dose is of minor benefit only and a better treatment plan would be up to 2 more daytime doses taken 1-2 hours prior to the times of onset of the RLS symptoms.

Sent: Thursday, July 04, 2002 9:40 PM
Subject: Medications

You have helped me so much in the past with my restless legs and now I need to ask for your help again. I've just learned from my sister that she has developed symptoms of restless legs.  She is 61 and has never had this problem before.  She recently began taking  Atenolol at 25mg/day and Toprol-XL (Metoprolol) at 25 mg/day for high blood pressure and rapid pulse and at about the same time she began experiencing restless legs. 

Could either or both of these drugs possibly cause the onset of restless leg symptoms?

Thanks very much,
Rita B.

Medical Reply

Anything is possible, but it is less likely that either of those drugs have caused her RLS.  These drugs are beta-blockers that may even help RLS. The only way to know for sure would be to stop the medication then restart them and see if the symptoms go away and then come back (only under the supervision of her own doctor)
Atenolol and Toprol are rarely used together as they are both in the same class and work on the same receptors.

Sent: Friday, July 05, 2002 12:48 PM
Subject: RLS
I have had RLS approximately since my early 20's.  My sisters and my mother also suffered from this condition.  Recently is has increased quite significantly.  I now cannot sit down and watch TV without it starting off.  As soon as I get comfortable and put my feet up it begins, which is very annoying for my husband.  Also recently I was on a long flight which was very uncomfortable because of RLS.  I find I dread having to sit for any length of time especially if it is not possible to get up when I can.
I exercise regularly, swim approximately 3 times a week, 1 hour at a time but it does not help.
The only thing I have found that helps RLS (for me that is) is, I stand up and stretch my arms up over my head, bend forward from the waist and try to get my head as close to my legs and feet as possible, in other words, bend yourself in half.  It then stretches the back of my leg, this feels like a pulling sensation traveling down my leg until it reaches my foot with a little cramp, I then walk around for a couple of minutes and this seems to clear it for the time being.
I have visions of myself following my mothers footsteps, she could not rest in the evenings, or at night, so I am desperate for any advice including alternative medicine.
Would be grateful for any reply
Eileen T.

Medical Reply

Stretching does help RLS for many who suffer from this condition.  As the RLS gets worse additional treatment is usually necessary.  Although there are lots of alternative treatments/medications that have been tried (and many are listed on our website), these help only a small minority of RLS patients.
Medications such as Mirapex or Requip seem to help the vast majority of RLS sufferers most often with little or no side effects if prescribed correctly.

Sent: Tuesday, July 09, 2002 6:20 PM
Subject: Restless Legs

I have been dealing with Restless Legs Syndrome for approximately four years. I also have problems with depression, it runs in my family, but so far I can't find another relative that has RLS. It seemed to begin when I stopped taking Trazadone. I was taking Prozac and having problems sleeping and Trazadone helped me sleep.

Eventually, after being off anti-depressants for awhile I was put on Depakote for the RLS. Amazingly it helped the depression and the RLS. I thought I was home free. Little did I know. When the RLS came back I went to another neurologist who prescribed Mirapex. I thought I died and went to heaven. Sleep glorious sleep, for awhile.

Then the RLS crept back into my life. Next I've been taking a stab at Requip. Again good results at first and now even with the addition of Ultram I'm going bonkers day and night. I don't know if this is rebound or what. I never know when it will hit me. Some days I wake up at 5:00 am with wiggly legs, sometimes I'm awake for awhile at l:30 and then again at 4:00am. I've gone for a couple of weeks now never knowing when it will hit. I've been taking Ambien off and on for the last week. It makes me very groggy in the morning, I still wake up at 5:00 or earlier and then go back to sleep at 8:00 am for an hour or so on the days that I don't have early commitments.

When I try to catch up on my sleep in the afternoons I always get Wiggly. I've tried taking the Requip in the afternoon and at 10:00 pm (.50) at each time. I'm trying to head off the wiggles before they start. Lately it seems like the Requip is causing the wiggles, at least in the daytime. Is this possible? I have caught up on my sleep by using the Ambien when I am severely sleep deprived but on occasion my husband has to drive me places because I'm either drugged up or sleep deprived and don't feel safe on the road.

All the drugs I take say to be cautious about driving. How do I live my life? In addition the Ambien makes me REALLY CRANKY. I think it might cause depression if I kept taking it. So, what is next? And why am I so resistant to long term relief? No matter what I do I can't sleep in past 5:00 am. I go to bed at 11:00 pm.

One doctor I've been seeing for other reasons says there is a connection between sleep and the ability to lose weight. She is trying to help me get my Circadian Rhythms straightened out and I'm trying to lose weight because I'm pre-diabetic (high cholesterol, high triglycerides, over weight, hyperinsulemia, and glucose intolerant, blood pressure normal).

IS THERE HOPE? I'm determined to get healthy. There was a day, not so long ago, when I could sleep anytime of day or night that I desired, for as long as I wanted. Maybe I used up my quota of sleep for this lifetime. I'm 61 and hope to live for a good long time. My grandmother made it to 98. Can you help? Does anyone out there have a similar experience  or any incite?

Ellen S. (aka Queen Wiggles a lot)

Medical Reply

I have lots of RLS patients who have similar problems.  The problem in part is that your RLS is in the moderate to severe range and thus is more difficult (but not impossible) to treat.    Some RLS sufferers seem to get very good initial help from Mirapex or Requip, then it seems like it works less well.  This happens in about 15% and is likely due to a limited form of tolerance to the drugs.
This tolerance is different than tolerance to narcotics or other drugs in that increasing the dose usually helps and does not lead to addiction or dependence.  As long as no side effects occur, then it is usually safe to increase these drugs until symptoms are relieved.
If increasing Mirapex or Requip is not helpful or not an option for other reasons then narcotic medication (perhaps alternating with Ultram) may be helpful to eliminate your RLS discomfort.

Sent: Thursday, July 11, 2002 9:29 PM
Subject: RLS in children

I have suffered from RLS for 6 years now.  Beginning, with what seems the same for many, while pregnant.  I have learned to live with it for myself, but my 5 1/2 year old boy acts like I feel when he is trying to settle down.  He is constantly cracking his ankles, saying that they hurt, and that cracking them does not make them feel better.  He is a kicker while sleeping, and I'm wondering if anyone has heard of children suffering from this as well? 

Medical Reply

At least 25% of RLS sufferers can trace their RLS problems to early childhood.  It is, of course, very difficult to diagnose RLS in children as they cannot articulate their complaints adequately.

Sent: Friday, July 12, 2002 10:06 AM
Subject: RLS medications
My doctor said to stop my prescription for Mirapex last night as I was having side effects. It was making me feel drugged every am till about 2 pm. I do take Vicodin 4 times a day and that always helped and doesn't affect me as I take it in the afternoon and have no problems. So last night I took a 10mg of sonata (sleeping pill) hoping that would take the place of the Mirapex for sleep.

I was taking 2  Mirapex a night (.125 mg) for months for sleeping and the Vicodin during the day for RLS symptoms. I tried Mirapex daytime and it made me very dopey, so only took it at night. Anyway the sonata kept me awake all last night. I would like to have your opinion on sonata?

Thank you,

Medical Reply

Sonata is a reasonable sleeping pill for most.  It has a quick onset but also leaves the body quickly.  Most people with insomnia will need 2 capsules to get the full effect rather than one.

Sent: Saturday, July 13, 2002 8:51 AM
Subject: Percocet

First, though, some background:   I have been taking Ultram (50mg) at the rate of two tablets twice a day for my "Sinemet legs," an intolerable aching which I believe is a legacy left me by being overdosed on Sinemet for restless legs several years ago. The rebound and augmentation effects of Sinemet seem never to have left me even though I haven't taken the drug since then and since beginning Mirapex.  (Mirapex has been WONDERFUL in controlling my restless legs.)

Ultram has been very effective in controlling my Sinemet legs.  I have been taking a drug holiday from Ultram every two weeks, substituting Tylenol 3 for two days before resuming Ultram again. But I dread the days with Tylenol 3 because it is inadequate in controlling pain, plus it gives me a feeling of having been punched in the stomach. Now to my question. 

I had surgery  5 days ago (hysterectomy) and was given Oxycodone/APAP 5/325mg (Perc EQ) to be taken every 4 to 6 hours as needed for pain relief.   It has been very effective and I am still taking it for pain, but have not taken any Ultram during this time.  Since Percocet has been so effective in relieving ALL my pain (including my Sinemet legs), would this be a good drug to take for holidays from Ultram, instead of Tylenol 3? 

I might add that my neurologist thinks there is no need for a drug holiday from Ultram, but I live in fear of building up a tolerance to Ultram which has been so effective in controlling my Sinemet legs.

Rita B.

Medical Reply

The neurologist may be right about not needing a drug holiday from Ultram, but I always like to play it safe. Vicodin (hydrocodone) and Percodan (oxycodone) are much RLS drugs than codeine.  I use Vicodin or Percodan to alternate with Ultram rather than codeine containing drugs.

Sent: Saturday, July 13, 2002 4:52 PM
Subject: Ambien ... works for me!

I have had RLS  for over 12 years, perhaps longer and I didn't realize what it was, sometimes it even moves to my arms.  Like most I've tried everything (non-medical) to no avail.  Recently I was having a sleeping problem because of my blood pressure medicine (gave me insomnia, all I needed !) and my doctor prescribed Ambien. 

This medication allowed me to get a great nights sleep (6-7 hours) and I felt great the next day. After changing my blood pressure medicine to something that didn't effect my sleep I still had to contend with RLS, so I thought . what the heck . and continued to take Ambien when I had troubling sleeping due to the 'leg thing '.  Lo-and-behold I still got a great nights sleep regardless of how bad my RLS was troubling me.  This stuff knocks me out in about 30 minutes .

I don' t take it every night because of some dependency issues.  However, if I were a diabetic I would be taking insulin every day so what the heck, as long as it works. I'm not suggesting that all of the RLS family start taking Ambien but it might be worth talking to your doctor about and trying. I haven't read all of the messages posted on this and other RLS boards, so if this is a topic already discussed please pardon me .

I'm just so excited about being able to get a good nights sleep that I want to share my personal experience. By the way, I'm taking one 10 mg tablet two to three times a week . the days that I'm not super tired when going to bed and know that good ol' RLS will be visiting. Not a cure but at least I'm getting some sleep.


Medical Reply

There is nothing wrong with taking Ambien 2-3 times per week for RLS.  For patients with mild RLS, Ambien can usually put you to sleep and of course once asleep, you cannot feel the RLS symptoms.
A better approach is to use Mirapex or Requip which resolves the RLS symptoms and can be used on a daily basis.  If insomnia occurs for other reasons, Ambien can be used in addition.

Sent: Sunday, July 14, 2002 11:22 AM
Subject: PLMD

Have there been any successful cases or cases in general of PLMD being treated through Chiropractic care. I am curious because of the neurological and nerve stimulus that occurs with PLMD patients.  My husband is 37 years old and is currently being treated with Permax.  It has been successful in helping him to sleep and avoid twitching etc. however, being a rather young man with a severe case of PLMD, I am concerned about the long term indications it may have on him to take this medication. 

I am curious about Chiropractic treatment as a logical test because of the nerve and neurological connection.

Thank you in advance,

Medical Reply

There is no proven help of chiropractic treatment for PLMD.  Although it does sound logical that it might help, as the cause of PLMD is not known (we do not really know if it is a nerve, muscle or other problem), it is often hard to speculate on what may help it.

Sent: Sunday, July 14, 2002 4:55 PM
Subject: RLS

Hello. I am a healthy, 40-year-old male and I believe I have RLS. I have felt this feeling since I was a teenager. It comes and it goes, but lately it has been a real problem. I also suffer from chronic insomnia and this is no help. I have it in my arms too. I can cover up my skin and go under the covers and it still hits me constantly.
This I know for a fact, and I've not seen anything about this anywhere before, but if I take two Benadryl capsules to help me sleep it comes up like a vengeance. I have had to spend hours metabolizing the Benadryl to get some respite. Of course I won't take the Benadryl anymore!
I have sympathetic people around me, but this is a real bother. I live in Las Vegas currently.
Thank you,
Frederic E. K.

Medical Reply

If you check our website you will see a list of drugs that worsen RLS and the antihistamines (with Benadryl being one of the worst offenders) are at the top of that list.  This is a very well known phenomenon and RLS patients should avoid many drugs or suffer much increased RLS symptoms.
See your doctor about getting on Mirapex or Requip and you should have little of no trouble with your RLS in general.

Sent: Monday, July 15, 2002 5:03 AM
Subject: Sleeping pills for RLS

After 6 months of being treated for insomnia (Trazadone...Ambien...etc...) I had a sleep test and  was diagnosed with a mild case of RLS as well as PLMD...Have been on Mirapex (2 .125 just before bedtime as well as 30 mg temazapam). Initiating sleep has been my problem for months....the temazepam seems to be working but at times it does not, and then I toss and turn, or get up and read.

Is initiating sleep one of the symptoms of this disease? Would alternating with Ambien be an option? I am due to see my doctor at the end of September.

Medical Reply

Initiating sleep is one of the problems of RLS, but only if the RLS is bothering you at bedtime and thus the RLS discomfort is the cause of not getting to sleep.   Temazepam takes 45-60 minutes to onset for sleep while there are much faster acting drugs like Ambien. 

There is no need to alternate temazepam and Ambien.  It is probably better to just take occasional drug holidays with Ambien.

Sent: Monday, July 15, 2002 12:03 PM
Subject: another victim of RLS

I have had this for over 10 years.  Sinemet has been my savior, but daily augmentation and increased dizziness is getting almost intolerable.  I tried Mirapex several months ago.  I immediately noticed increased dizziness almost at the start.  But I only needed one .125 cap a night to sleep through the night and no augmentation.  I thought it was a miracle drug. 

But after about 2 weeks I needed 2 caps a night.  At the end of 3 weeks I had a spell weakness light headiness and dizzy.  My heart beat was 36 per min.  The next day another spell and heart beat was 45.  After a short time of rest it went up to my normal of 68 to 70.  My doctor took me off of Mirapex.

Now I am ready to try it again because of the augmentation with Sinemet.  Has this  happened to anyone else with Mirapex?  Any recommendations?

Bill H.

Medical Reply

Your side effects with Mirapex are unusual, but obviously may occur rarely.  You might want to try Requip (starting with 1/2 or one of the lowest strength .25 mg tablets).  Each medication is a little different, and Requip might take care of your RLS without side effects.

A Reply from Bill H.

Sent: Friday, July 19, 2002 10:41 AM
Subject: How to take Requip?

Thanks for the quick response to my e-mail on 7/15 and suggestion to try Requip to replace Sinemet.  I took one Requip .25 mg  last night at 11 PM before going to bed.  The RLS was bad and no results from Requip.  I took one Aleve tab at 1:30 AM.  At 2:15 AM I took a 2nd Requip. No relief.  In fact, RLS is still bad this morning. 

Should I have taken 3 last night , or taken them closer, or even take another this morning?  My prescription calls for 3 per day, but the doctor got his info from the RLS foundation report that I gave him.  I am just confused (and miserable) on how to take Requip for possible good results.  Any help will be greatly appreciated. 

Thanks again,.
Bill H.

Medical Reply

Getting off of Sinemet can be tricky.  For some patients I try to taper the Sinemet dose slowly while increasing the dose of Requip by one tablet every 3 days.  Stopping the Sinemet suddenly may require a much larger dose of Requip which may cause side effects if taken right away and may not be needed in the long run.

Sent: Tuesday, July 16, 2002 12:31 PM
Subject: Pain with RLS

I have been reading the letters and  your advice from your RLS patients with great interest.  I see myself in many of the letters.  I am currently on Mirapex with quite good control,  (except for the insomnia) but have noticed a GREAT deal of pain in my lower legs, especially the calves.  It is so severe at times, that Tylenol #  3 does not help.  I am considering a different pain med. and am going to ask my GP to prescribe another pain medication.  Is Ultram the drug of choice?   I describe my aching like a toothache in my bones.  I note that many patients with RLS have this problem.  Is it possible that Mirapex could be causing this ??  or is it just another part of the RLS ?
My second concern is about my Hormone Replacement Therapy.  I have just started a new one as of July 1st and I strongly suspect that it is exacerbating my RLS.  The drug is called Prem Plus.  Do you know which HRT drug makes the RLS worse ? or which one does not cause any problems.
Thank you for your help - your are a life saver to those of us with RLS.  Thanks again,
Rosemarie (64) Canada

Medical Reply

A small, but significant percentage of RLS patients have a painful neuropathy with their disease.  This is often very hard to treat.  At times increasing the dose of Mirapex may be helpful.  If not, then narcotics usually help.  If Tylenol # 3 did not help, Vicodin may be a better choice.  Ultram works better for some but one can never tell who will do better on which drug without first trying them.
Hormones of all type (including menopause) may worsen or improve RLS.  It is very hard to figure out what will happen and why some get better and others worsen.  It is therefore impossible to say if any type of hormone replacement therapy is better or worse than another.

Sent: Wednesday, July 17, 2002 1:37 PM
Subject: (no subject)

I have been diagnosed with Period Limb Movement Disorder.  And was wondering if a bad back could lead to a false diagnosis or be a contributing cause of PLMD.  Reason being, I certainly do not have restless legs or the creepy crawly feelings described on various websites. 

However, my lower back does drive me nuts and causes me to toss and turn before I fall asleep and I can feel myself tossing and turning from about 5 AM on in a light stage of sleep and it discomfort in my back that causes it.  Also for as long as I can remember since childhood staying in the same position to long whether it be laying down, standing still or sitting has a vast majority of the time created the same restless feeling in my back. Any thoughts or suggestions?


Medical Reply

PLMD, as far as we know has nothing to do with back problems.  There are a lot of PLMD patients who do not have RLS, although many of these patients may develop RLS with time.

Sent: Wednesday, July 17, 2002 3:48 PM
Subject: RLS

I have suffered from Restless Leg Syndrome ever since I was a child. Unfortunately, I only recently identified the problem by browsing the Internet. I am 41 years old.

Upon reading the literature, I started to take iron pills (1-2 a day) and this has, for all practical purposes, alleviated the restless leg syndrome symptoms. The impact was immediate. Note that I complained to my doctor about the symptoms and my lack of energy so he ran some tests. My blood and urine tests came back as "normal". The moral of the story - there is very little downside in simply trying the iron supplements regardless of the test results. 

Michael J. C.
Etobicoke, Ontario

Medical Reply

Low iron can be a cause of RLS.  Just measuring serum iron levels is often not adequate. The serum ferritin level is much more sensitive and can pick up low iron levels even when iron blood levels are normal.
Unfortunately, replacing iron does not always help. Taking iron, when not necessary can cause medical problems and should only be done under medical supervision.

Sent: Thursday, July 18, 2002 10:46 AM
Subject: RE: PLMD (see previous letter, Thursday, June 13, 2002 12:45 PM, Page 41)
In follow up to my Mirapex/PLMD question, after being on Mirapex .25 mg at bedtime for about 4 or 5 weeks, I have in the past week developed something like restless leg syndrome without the neurological component of the creepy/crawly feeling.  If I lay on the couch at night and watch TV, I cannot keep my legs still - they have to move about every 30 - 40 seconds and if I try to consciously try and stop them from moving, I can just barely control them. 

My sleep specialist (through nurse via phone) wants to increase the Mirapex to .25 before dinner and the current dose of .25 at hs.  Since I didn't have RLS before taking the Mirapex, it seems counterintuitive that it is not enough of a dose - it seems like it is too much of a dose. 

What do you think?  Thanks,
Susan H.

Medical Reply

You are right that is sounds counterintuitive to increase the Mirapex dose, but in fact, it is probably the right thing to do.  I have heard of similar cases where starting a dopamine type drug for PLMD brings up the RLS (which may have been hidden prior to this), but is helped by taking another dose of Mirapex about an hour or 2 before the onset of the RLS symptoms.
There is no explanation for why the RLS occurred with the Mirapex, but treating it with more Mirapex usually works well.  Many RLS sufferers do not have the creepy-crawly feelings but rather only the irresistible urge to move their legs.

Sent: Monday, July 22, 2002 2:28 AM
Subject: Insomnia with RLS medications

Aren't there any medications for RLS that don't cause insomnia?  I've taken Neurontin but it doesn't help my severe RLS.  Mirapex and Requip both cause insomnia.  Can you help?

Medical Reply

You might try Permax, but that may or may not work better than Mirapex or Requip as far as side effects go.  Each medication can be different.  Another choice in this family (but somewhat different) is Parlodel.
If the Parkinson's disease medications do not work for you, then narcotics are left.  Vicodin is a good choice, but I like to use methadone which lasts longer and works better.  Ultram is a non-narcotic choice which can be alternated (or used instead of) with the narcotics.

Sent: Tuesday, July 23, 2002 6:18 AM
Subject: RLS

I know this sounds crazy, but while vacationing in Canada a week ago, I was talking with two nurses.  One is retired and one is a home health nurse.  They both told me of knowing patients with RLS and they take a bar of soap to bed with them. 

One uses Irish Spring and the other says any kind.  One says in the sheets and the other says under the pillow.  Both agree they don't know why it works but they also agree that they have had nothing but positive feedback from the patients.

What do you think?  Have you ever heard of such a thing?
Also, I am off Sinemet because of augmentation as of today and am trying Permax tonight.  My doctor says that I can go from one to the other OK but I was taking Sinemet at 7:00 for evenings help and Sinemet CR at night for nighttime help.  Now just one Permax. 

I went to bed at 1:00 a.m. this morning and slept only until 4:00 a.m. so the Sinemet CR is not working and I am having the RLS during the day, while boating, while driving, while reading and I never did before.  What can I expect from Permax?

Jan B.

Medical Reply

The only thing that I can say for sure about going to bed with soap is that these patients will be very ready to take a shower.  I know of no other medical benefit from that interesting treatment.

It is likely that your RLS occurring earlier in the day is due to augmentation from taking Sinemet, which can occur even when getting of the drug.  Part of the problem is that you are not matching the Sinemet dose (that you stopped suddenly) with a similar dose of Permax (which you can't do as you need to slowly increase Permax to avoid side effects).

The way around this dilemma is to taper slowly off of Sinemet while increasing Permax.  Mirapex or Requip tend to work better than Permax with less side effects.

Sent: Wednesday, July 24, 2002 6:58 AM
Subject: RLS Treatment with clonazepam and Levadopa

I've had RLS since I was in my early 30s (I'm now 79).  The problem was finally diagnosed about 12 years ago.  I was put on 1/4 mg of clonazepam and over the next five years the dosage was gradually increased to 2 mg before going to sleep. 

About a year ago I also started having severe pain in the evenings and early AM, along with the usual twitching and uncontrolled leg movement.  My wife says sometimes my arms would also twitch at night.  When the pain started my doctor suggested a neurologist whom he knew had worked with RLS.  He started me on what is called here (Israel) Dopicar.  It's the same as US products containing 25 mg Carbidopa and 250 mg Levadopa. 

My dosage was 1/2 tablet about 11:30 AM along with 1mg of clonazepam.  The evening dose, taken 1 1/2 hours before going to sleep, was 1 full tablet of Dopicar and 2 mg of clonazepam.  The big problem with this is that I was groggy in the morning and my speech started to slur and I was becoming forgetful.  Further, my  reaction time seemed to be slower and my children and grandchildren suggested to my wife that they felt it was dangerous for me to drive; and I've stopped. 

I've started on a regime of gradually reducing the amount of clonazepam.  I'm now down to half of what I was taking before, and I hope to go further.  The grogginess has stopped; my speech is better, but I'm still holding off on driving. 

My question has to do with the use of clonazepam and Dopicar together.  I'm having a difficult time getting a good answer, and I can't find anything in articles or other peoples letters that says they have the same form of therapy.  I do fall asleep quickly at night but am up after 4-5 hours and have to start walking. 

Has anyone out there had similar experience or is there some MD who can suggest why these two medications should be taken together?  I'd really appreciate hearing from anyone.

Bernie K.,
Tel Aviv, Israel 

Medical Reply

Most of the textbooks on treating RLS will list clonazepam and Sinemet (this is basically the same as Dopicar) as the drugs of choice, either alone or in combination.  I personally do not like to prescribe clonazepam as it has a very high incidence of daytime sleepiness (just as you have noticed) and can be an addictive drug.   The grogginess that you developed during the daytime have likely little to do with the combination of drugs, but rather just to the clonazepam alone.
Sinemet (Dopicar) is also a drug that I do not prescribe as it causes augmentation and rebound.  The other Parkinson's disease drugs (Mirapex or Requip) work much better and have much less side effects.  It is very likely that with the correct dose of one of these drugs, that you would not need anything like clonazepam at all.

Sent: Thursday, July 25, 2002 3:51 PM
Subject: Jumpy legs

I have had severe RLS since my teens (I am 47 now) and have been on Klonopin and Pamelor nightly for 4 years now. When I'm still restless I'll get up and drink a cup of hot Sleepytime tea and a banana and I'm gone! Out cold in dreamland. aspirin seems to help too to top off all the other stuff.
Sent: Friday, July 26, 2002 1:04 AM
Subject: RLS question

I have been taking 2 Ultram 50 mg. and .25 mg of Xanax before bedtime and do not usually have any problems. 

This week three things happened.

     1. My Ultram was changed to generic brand (tramadol 50 mg.) 
     2.  I started taking Zyprexa (2.5 mg.) 3 days ago.
     3.  My legs and arms have been really bad at night (all night) the past two nights.

Is there a connection between the first 2 to create the 3rd one??

Thank you,
Nita B.

Medical Reply

Ultram should be the same whether or not it is a name brand.  It is much more likely that the Zyprexa is causing your problem.  Mirapex is a much better drug for RLS and would likely eliminate your need for Ultram and Xanax.

Sent: Friday, July 26, 2002 2:56 AM
Subject: Pinched nerves

I attended a new support group meeting a couple of months ago and the  physician speaker used a medical term I asked her to explain.  She said it  referred to pinched nerves.  

My RLS seems to have two forms. There is the regular RLS and then sometimes I  cannot sit, sleep or concentrate because I feel like I have a pinched nerve.  I have always figured it to be the really miserable part of RLS as it can set  in for a relentless day or two (day & night). 

Is this second form RLS or  something else?


Medical Reply

The term "pinched nerve" is not a medical one, but rather a lay term.  Some RLS patients have a neuropathy (inflammation of some nerves) which may result in pain in their limbs unlike the majority of RLS sufferers who only have the urge move and uncomfortable feeling (creepy crawly sensations). This is not due to a "pinched nerve" which is due to the pinching or pressure effect of a bulging vertebral disc pushing on a nerve.

Sent: Thursday, July 25, 2002 9:17 PM
Subject: Nightmares and RLS drugs
After reading some of your e-mail suggestions for Mirapex, I called my doctor and he agreed to let me try it.  I am also trying to come off Effexor and have been reduced from 150 to 75 mg. for 10 days and then I will be off that.  I also have fibromyalgia which is why I was taking the Effexor, but after reading that antidepressants can aggravate RLS, I decided to try and stop it.  I also have sleep apnea and PLMD plus reflux disease and irritable bowel.  In other words, I am a mess.  Most of these occurred after I was in an automobile accident in 1994. 
My restless legs have become worse recently since I started using the bi-pap machine for the sleep apnea.  I seem to be very sensitive to most medications that help me sleep and over the years have tried several different antidepressants, pain killers and sleep inducers with most of them causing me to have severe nightmares or crazy dreams in which I seem to be extremely active and wake up tired. 

When I go off the antidepressants, etc. the dreams stop of become mild.  Since I have started the Mirapex, I am beginning to have more dreams and they are becoming more intense.  I am taking one .125 mcg. at night only and it has stopped the restless legs, but I don't enjoy the dreams or waking up feeling tired.  It takes me longer to get my day going.  Is there anything I can do about this.  It seems I am trading one thing for another.  

Thank you so much for your service.  Does anyone else have this problem with the dreams.  In all the e-mails I have read it was not mentioned once and I am wondering what is causing it and if there is any way I can get the sleep without the troubling dreams.
Thanks again.

Medical Reply

A very small minority of patients who use Mirapex may have problems with dreams, but as with most infrequent side effects, it is impossible to explain why they occur.  You might want to change to Requip .25 mg and see if you get the same side effect.

Sent: Saturday, July 27, 2002 10:23 AM
Subject: side effects?
I've suffered from RLS off and on since I was a teenager (I'm now 49). Though I resisted taking medication for a long time, I've been taking bromocriptine for the past 6 or 7 years. I find that if I do not take the exact dosage at the exact time of day, I'm pacing the house all night. I must take one pill (2.5 g) at noon and two at about 6pm.

I've increased the dosage gradually over the years but this is what has been working for a couple of years now. I've had no noticeable side effects yet except low blood pressure which hasn't been much of a problem, but I'm concerned about taking this medication and probably having to increase the dosage periodically for the rest of my life.

Yet, experience shows me that if I miss the medication even one day (or take it at the wrong time), I cannot sleep that night at all. Before I started taking the Bromocriptine I learned the hard way what sleep deprivation does, so I feel I have no choice.

Should I be worried about long term side effects?

Gordon G.

Medical Reply

There is probably little or no concern about taking bromocriptine (Parlodel) for the long term. As you get older, the RLS does tend to get worse, thus requiring higher doses.  Mirapex or Requip may work better.  It is quite common that a much smaller dose of an RLS drug works much better when taken 1-2 hours before symptoms occur rather than just before or after.

Sent: Wednesday, July 31, 2002 1:40 AM
Subject: help

I have very severe RLS.  I'm 61 and have had this since I was a teenager.  It only gets worse with time.  I've taken Neurontin at night, which helped me sleep but did little for the RLS, left me dopey the next day, and caused weight gain.  Requip seems to worsen my symptoms, especially paresthesia.  

Mirapex causes bad insomnia.  What can I do?  I need sleep, don't want to be dopey in the day, and am tired of fighting weight gain from medications.  I have daytime RLS, which becomes severe in the evenings, to the point that I CANNOT sit still at all.  Any suggestions would be appreciated.  

I haven't tried the opiates.  I have already tried benzodiazepines.  Which of the opiates would be your first choice?  

Karen U.

Medical Reply

My next choice for treatment would be the opiates (or even Ultram, the only non-opiate pain killer that helps RLS).  Many doctors will prescribe Vicodin, but that contains Tylenol which does not help RLS and may cause problems (although the likelihood is very small). 

I often prefer to prescribe methadone, which despite its stigma, works extremely well for RLS and contains no other medications.

Sent: August 02, 2002 12:26 AM
Subject: RLS

I have had Restless Leg Syndrome for years without being aware of what it  was.  In the last 2 years I have had severe burning pain in my knees with any  repetitious movement.  As soon as the movement is stopped the pain subsides  but my knees are weak for a little while.  I have been to numerous doctors  who cant tell me what this is and how to stop it.  Could this be an effect of  RLS?

The pain that occurs with the RLS is well known but the explanation for it is not yet available.  Only a minority of RLS sufferers have this problem. The weak knees may simply be a reaction to the RLS and pain symptoms.

Sent: Saturday, August 03, 2002 7:34 AM
Subject: Mirapex

Had to go off of Sinemet and Sinemet Cr because of augmentation.  Have been on Permax less than 2 weeks.  Had been doing quite well up until and last three nights.  I have not had the RLS but can't sleep even though I am still taking Klonopin and have for 5 years.  This may pass but if it does not, I was going to ask my Dr. to change me ot Mirapex. 

But, after reading so many of your letters, I see that many are complaining of insomnia from Mirapex.  Would this not be a good choice for me.  I feel that my doctor will do as I ask.  I am not ready to give up on the Permax just yet but would like to have an idea of where to go and what to do next in this game of trial and error.

Thanks so much.
Jan B. 

Medical Reply

Unfortunately some trial (educated type) and error may be necessary as every patient may be different.  Mirapex is a better drug than Permax and some patients do suffer insomnia, but others have sleepiness as their side effect. Requip is another good choice if the Mirapex does not work out.

Sent: Sunday, August 04, 2002 12:22 PM
Subject: Is this PLMD???

My husband has had this problem for at least 3 years now and I have just found that it may be PLMD. I had difficulty sleeping a couple of nights ago and found him jerking in his sleep....his muscles were sooo tense as if he was holding on to something for dear life but his muscles were also flexing.

For the past 3 years he has been waking up in the morning so sore that he can barely walk, tie his shoes, or drive his vehicle because every muscle in his body is sore. He says it is as if he is working out in his sleep or lifting weights. He literally has to pick up his leg to put it in the truck sometimes.

I am concerned because I have not heard anyone with PLMD say that they wake up with sore or achy this normal? Also, he is only 23 and was about 20 when all of this started....isn't he kind of young for this?

Please get back to me soon about this we don't know what to really do.

Medical Reply

He may very well have PLMD.  He will need a sleep study to prove it.  Many PLMD patients complain about sore limbs in the morning.  A large percentage of RLS and PLMD sufferers have the onset of their problems before becoming adults.

Sent: Sunday, August 04, 2002 5:17 PM
Subject: Mirapex Holiday

I have been on Mirapex for 3 years, taking 3 1/2 (0.25) per day.  I find that I have had insomnia for almost all of the time on Mirapex as well as "aching".  I would like to come off Mirapex and see if the aching and insomnia go away.  In your opinion - what should I try next? 
Rosemarie (63) Canada

Medical Reply

Requip would be a good alternative. If you have similar problems with Requip, then a new class of medication may be needed.

Sent: Tuesday, August 06, 2002 8:26 PM
Subject: another person with RLS

I had RLS about 5 years ago for just a year or two of my life.  The "fidgety legs" as I called them happened at a time when I was having a lot of anxiety and depression in my life.  I sought treatment for my stress and anxiety including a year of heavy counseling, yoga, exercise, etc.  As my anxiety decreased so did my restless legs.  I cannot help but think the two were related, I KNOW they were.  Because luckily as my mind and thoughts relaxed, so did my body-- and I did not have to resort to any drug treatment.

Now I sleep fine, partner now suffers from the same "fidgits".  She  is 34 and is recently out of of an alcoholic recovery center.  She is only 5 months sober and is still trying very much to figure out how to cope with herself and life without drinking.  As a result of not being able to rely on alcohol to help her relax, she has developed a lot of  anxiety, and along with the anxiety has come these nightly fidgits.   

It takes her a long time to get to sleep with her legs constantly rubbing, moving or lightly jerking.  I get extremely irritable because now I can sleep but my sleep is being constantly interrupted.  I guess I can only hope that as she copes more with her alcoholism her fidgits will calm down.  And the other downer, when you're an addict you cant take most of the drugs available.

I cant help but think there's a connection between anxiety, depression, or some type of brain imbalance and these "fidgits".  

Thanks for the great information on the website.  

Medical Reply

The cause of RLS is mostly unknown so it is difficult to fully answer your question.  However, with patients who do have RLS, it is very well known that anxiety and stress will dramatically worsen RLS symptoms.

Sent: Wednesday, August 07, 2002 2:07 PM
Subject: Pregnancy and Restless Leg Syndrome

I am a 40 year old trying to conceive. I have severe RLS--I have had it since I was 14. I have been on Klonopin for RLS for 6 years. I have put off getting pregnant because of RLS--without medication I would be unable to work.
Since I am a teacher and have the summer off I have stopped taking Klonopin for RLS. I have had very little sleep in the past 6 weeks. I will be returning to work soon and will need to begin some kind of treatment.
 I am very concerned about taking any type of medication while pregnant---but, am out of ideas for how to survive without sleep. I am presently using an Alpha Stim--do you know if this works? I have also looked into magnet therapy ---Does this work? If there are no alternative treatments---are there any medications that are less risky?
I am desperate to find some kind of relieve--so, that I may continue to try to conceive for the next 6 months.
Any advice, suggestions would be greatly appreciated in helping make an informed decision about whether Pregnancy and RLS is possible.
Thank You,
Cindy R.

Medical Reply

RLS and pregnancy can sometimes be a difficult problem.  It is unfortunately quite common for RLS to significantly worsen during the latter half of pregnancy.  Virtually all the good RLS drugs are class C or worse (generally, class A and B are reasonably acceptable).  If there is no other way than taking a class C drug (such as Mirapex) to go through pregnancy, then you and your obstetrician must discuss and weigh the risks and benefits.
Alternative treatments are most often of limited or no benefit, especially when the RLS gets severe.

Sent: Wednesday, August 07, 2002 6:30 PM

I've sent this email twice but I don't think the first one "left the post office" so I apologize if you've received this already.   Do you think it's possible for a meningioma of 2cm pressing into the right side of the cerebellum has anything to do with worsening of RLS symptoms?  It's very close to the transverse sinus and is being removed on October 7th. 

From my research, I've learned that the cerebellum as well as the spinal cord is involved in RLS and PLMD.  What is your opinion on this? 


Medical Reply

We have not real proof that the cerebellum or spinal cord is involved in RLS.  There have been only a few patients with either spinal cord or brain lesions that have been even remotely associated with RLS.

Sent: Tuesday, August 20, 2002 7:49 AM
Subject: RLS

I desperately need your help.  I have been suffering with RLS for about 30 years now.  I started getting it when in college and I am now 48.  I have tried almost every type of medication that is on your list.  I currently am taking a Sinemet at around dinnertime (or else I can't sit down), and then I take 2 Mirapex at bedtime. 

And then sometimes (almost always nowadays) I'll take 1-2 more Sinemet during the night.  I am getting a rebound effect with Sinemet.  The Sinemet seems to work a little faster that is why I reach for it more quickly.  Can I up the dose of the Mirapex that I am taking?  I currently am taking .25 mg (2 at night).  I also take 2 warm baths at night.

I seem to be getting worse.  I read the article from the women that said she starts taking her Mirapex during the day.  Would that help me?  I usually can't fall asleep until 2:30-3:00 a.m. and then wake up after about 4 hours. I think I'm also anxious now, or it could be the lack of sleep. 

Last night I tried an Ambien when all else failed.  I also have tried taking magnesium, calcium and zinc as supplements (pill form) and don't see a significant difference.  I do wonder about the aspartame drinks.  I consume a lot of diet sodas and diet ice tea, etc.  I can't drink alcohol without having a terrible night of sleep with RLS. 

Sex does do wonders for me, but my husband travels a lot and then says "I'm just using him for sex!" Help!!! I am in a terrible way right now.

Thank you,

Medical Reply

You are right in that a lot of your problem may be coming from augmentation and rebound from the Sinemet.  The best thing to do is discuss with your doctor about tapering off the drug.  I often use Mirapex at much higher doses (sometimes as high as 3 grams per day) if needed.  The dose of Mirapex should be slowly increased until the lowest dose that relieves the problem is reached (which should be easier off the Sinemet).

Several other RLS sufferers have noted that sexual relations help the problem considerably.

Sent: Tuesday, August 20, 2002 7:24 PM
Subject: Pain and RLS

My neurologist has diagnosed me with RLS and many of my symptoms certainly fit. Mirapex is helping. Rather than feeling restless, however, my main complaint is severe pain in my feet and - not as often - in my calves. It is always at night.

Do others report severe aching in regards to RLS?

Marilyn H.

Medical Reply


About 20-30% of RLS sufferers have a separate painful neuropathy such as you are complaining about.  This may sometimes be helped by increasing the Mirapex dose, by adding Neurontin or by  adding a pain killer such as Ultram or a narcotic.

Sent: Wednesday, August 21, 2002 12:28 PM
Subject: Iron Therapy Question

Iron Therapy Question Thanks again for the great site. My RLS seems to be reduced by about 60% through "iron therapy".  My iron profile is fairly normal except for the red blood count, which is right at the lower limit of normal (around 4.00 mil/mm3).

We have been following your site's recommended dosage for about 1 week now: the exception being that we are using a prolonged release version of fumarate.  Does this type of iron have the same RLS efficacy as the recommended  ferrous sulfate?

Regards and Thanks in advance,

Medical Reply

The best way to monitor iron therapy (other than to treat until your RLS symptoms are gone) is to monitor the serum ferritin level which should be brought to greater than 45.  All forms of oral iron therapy have their pros and cons, but the most important factor is how well they are tolerated.

Stomach upset and constipation are fairly common and can limit therapy greatly. Most oral iron is very poorly absorbed (often less than 10-20% of the dose) and is worsened by food.  To get maximum iron into your body it is best to take it at least one hour before meals and take Vitamin C (about 250-500 mg) just before.

Sent: Tuesday, August 27, 2002 8:19 AM
Subject: My instant relief!

I once read in one of the monthly RLS Foundation newsletters about a reader who tried an herbal supplement called horse chestnut. I picked some up at my local pharmacy and took one capsule before going to bed. 

I slept through the night without any problems and it has continued to work for me ever since.  After trying expensive ineffective sleep aids, this is a wonderfully cheaper solution.  Give it a try. 

Melissa B.,  Greenbrier, TN

Sent: Wednesday, August 28, 2002 6:27 PM
Subject: Question

I discovered your website today with great interest.  I have suffered from RLS for several years, but it only started causing insomnia about 2 years ago.  I lived in Germany at the time, and my neurologist started me with the equivalent of Sinemet, which worked well until symptom augmentation started. 

A year ago we moved to South Carolina, and the neurologist here started me on Requip.  I've gone from an initial 0.5 mg. up to now 2.0 mg (4x 0.5 mg. spread throughout the day, starting at lunch, so I can work at my desk in the afternoon).  The 2.0 mg. has been enough for the last 8 months, but that seems to be changing.  I don't really want to go to 5 pills, but the neurologist says I can go up to 8 (4.0 mg. per day) if I need to.

I'm wondering if Vitamin B therapy as a supplement therapy might help.  I'm trying to avoid just increasing the Requip.  Still, I am grateful for this medication (and so is my wife!!).

Herb B.
Lexington, SC

Medical Reply

The odds of Vitamin B helping are miniscule. The average RLS patient needs between 2 and 6 of the Requip .25 mg tablets.  Patients with more severe RLS can go much higher.

Sent: Wednesday, August 28, 2002 11:25 PM
Subject: RLS
I'm a 39 year old female.  I think I've had RLS since a child.  I didn't really know what it was called at the time, but I do remember my mother having to message my calves all the time because I complained that my legs were aching and it caused me to lose sleep.  My RLS is worse than ever right now.  It's to the point where I don't want to go see a movie, or I dread my bedtime because I just know what I have to face.  I can't even sit in a meeting at work.  I'm going to the doctor next week to see if he can do anything for me. 
My RLS affects me in my calves, knees and sometimes even in my elbows and up my arms.  It's a very irritating feeling.  The need to move my legs all the time to get any relief is really making me crazy.  The only little relief I get is soaking in a hot bath for about 10-15 minutes. Then I try to get to sleep as fast as I can.  My family says I even kick my legs around in my sleep.  This wakes me up throughout the night, and I have to get up and walk around to get relief from this monster. 
Can you suggest any kind of medication for this?
Cheryl P..

Medical Reply

Most RLS patients with symptoms like yours can get excellent relief with Requip or Mirapex.  Speak to your doctor about starting on one of these medications and you will likely be amazed at how well you will feel.

Sent: Saturday, August 31, 2002 10:59 AM
Subject: Mirapex

I've written in the past and have appreciated your advise.  Thank you.  I have a new question.  I've been taking Mirapex for several years now. I started at a low dose, one .125 mg. per night with good results plus Neurontin and Xanax.  I eliminated the Neurontin as it didn't seem to be too effective, plus seemed to make me confused. 

Eventually I've had to increase the Mirapex to 2 of the  .25 mg pills, plus Xanax (.50 to 1 mg).  The Mirapex is effective in controlling my legs, but once I take it my evening is "shot," I'm lethargic, etc.  But to top it off, even though I'm lethargic I can't get a good night's sleep.  Then I'm up at night eating.  Needless to say I've gained weight.  I was wondering if you had any suggestions.

I teach 3rd grade and can deal with my RLS during the day, as I'm active.  But at night I need to get a good night's sleep. 

Thank you,
Jan S., Highland, CA

Medical Reply


You should think about weaning off of Xanax, as it can become addictive and it is easy to develop tolerance to this drug.  Ambien would be a better choice (but is often more expensive and not covered by insurance plans).
Some RLS sufferers do get sedation/confusion with Mirapex even at your relatively low doses.  Other options would be to change to equivalent doses of Requip (.25 mg of Requip = .125 mg of Mirapex) and see if this eliminates the problem.  If not, then another alternative would be to add a narcotic (such as Vicodin) or Ultram.

Sent: Sunday, September 01, 2002 9:48 AM
Subject: (no subject)

I have had RLS for 10 years now and it is getting worst.  Ultram (Tramadol) works wonderfully for me but when I have to take a "drug holiday", I have been unable to find anything that works as well as Ultram.

I have tried Mirapex.  I hated it, it made me so depressed I wanted to jump off a bridge also Neurontin which did nothing but deplete my wallet , its very expensive.  I'm thinking of asking my doctor if half a Permax for the week I'm off of Ultram with the added use of Valium.

Valium sort of helps but I know it is addictive.  Please remember this is only for a week until I can back to using Ultram.  I only use any of the drugs at night and put up with the RLS during the day.   

Also, have you heard of use SAMe?  I have heard by the grapevine that it really helps and I wonder the exact amount is needed.    

Thanks so very much,
Pat M.

Medical Reply

Vicodin would likely work very well for your Ultram drug holiday.  Any drug that you take for a few days or for a week (for your drug holiday) has virtually no chance of causing addition.  I have many patients who alternate during the week with a few days (3-4) of Ultram then a few days of Vicodin.

SAMe has no proven role in RLS and only an extremely small minority of RLS sufferers have gotten any benefit from it.

Sent: Tuesday, September 03, 2002 10:32 AM
Subject: exercise
I am 48 yrs old and have been suffering from restless legs for the past 10 years. The problem began about same time that I injured my neck, ruptured the c 6-7 disk and required surgery to fuse bone from my hip to replace the ruptured disk.

The restless legs would come and go over the 10 year period some good nights, many bad nights. I had a prescription of Vicodin for my neck pain that I used, taking one pill after not sleeping much for a week or two, until they ran out. Not knowing what was wrong I suffered until last summer when I read an article in my local newspaper mentioning restless leg syndrome, went to their web site and spent the whole day at my office reading about it. All of the symptoms matched my symptoms, a then found a local doctor, last August, who prescribed Sinemet (carbidopa/levo ) 50/200.

I initially found relief and began sleeping through the night, until middle of November when the medication stopped working. I thought that maybe since my physical activity had declined, that it might be causing the problem. I began walking and running on a treadmill for 30 minutes a night 4-5 days a week and the symptoms went away( still taking Sinemet).

This summer my running has declined and the symptoms have worsened again and the problem starts about 3 pm every afternoon then lessens and comes back again when I try to sit and watch TV around 8pm. In addition many nights after I take the Sinemet the symptoms worsen for the next 2 hours.

Is the running related? Should I ask my doctor to change the medication? I don't know what to do and I am getting desperate.

Monroe C.

Medical Reply

You are getting augmentation and rebound which occurs with Sinemet in most patients on this drug.  This is why I do not use this drug and instead prescribe Mirapex or Requip which do not have these problems.

Sent: Wednesday, September 04, 2002 6:53 AM
Subject: Ambien- zolpidem.
Just received a 90 day  supply of Ambien from my drug supplier and the information sheet has blown my mind.
It says not to take this medicine for more than 7-10 days - for short term us only.  Also said not to stop taking this drug suddenly because you may have withdrawal and be uncomfortable.  Also, zolpidem is habit forming.  Which is the generic name, Ambien or zolpidem?
Can you explain why a doctor would prescribe Ambien to get me off of Klonopin? Am I not exchanging one monster for another?  Please help me.
Jan B.

Medical Reply

All sleeping pills come with the warning that they should not be used for over 7-10 days.  Studies have shown that Ambien is quite safe in studies for up to 35 days. The problems with long term use apply more to the benzodiazepine type of sleeping pills (Klonopin, Valium, Halcion, Restoril, etc.).  Most sleep specialists believe that Ambien is quite safe even when used for prolonged periods of time.
I have had many patients who have been on long term Ambien without any problems. The warnings that you see on the Ambien product label refer to sedatives in general, not Ambien in specific.  If you read the warnings carefully, you will see that they really apply to other drugs and have rarely if ever been reported to occur with Ambien.
Ambien is a particularly good drug to use when tapering off of Klonopin.  I use this very, very often for this purpose.  Ambien is the trade name and the generic name is zolpidem.

Sent: Wednesday, September 04, 2002 9:01 PM
Subject: RLS & food

I have discovered a sure-fire cause of RLS for me...potatoes, tomatoes, jicama...anything in the Nightshade family (white potatoes, tomatoes, eggplant) or the Morning Glory family (jicama and sweet potatoes and yams)
Omitting these from my diet--especially the evening meal--has brought near 100% relief.
It may sound strange, but if it works!
Washington State

Medical Reply

We have heard stranger treatments for RLS than yours.  Clearly different things work for different RLS sufferers.

Sent: Friday, September 06, 2002 4:37 AM
Subject: RLS & other neurological conditions

I have been disabled with severe Chronic Fatigue Syndrome (CFS) and Orthostatic Intolerance for 16 years with numerous neurological symptoms.  Peripheral neuropathy and RLS have also been a problem most of my life, increasing in the last few years.  In addition to the typical RLS problems (unbearable, grabbing, hard-to-describe feelings in my lower legs, and the associated sleep problems) I also frequently have a burning sensation in the bottom of my feet, again mostly the left foot.  These problems have increased in the past year.
My question is: has RLS been found to be associated with CFS and autonomic disorders such as OI?  I have been on 3600 mg/day Neurontin for 5 years which has helped with numerous neurological symptoms of CFS, and which relieves, but does not stop, the RLS.  An extra Neurontin will help on a particularly bad RLS night. 
A feature of CFS is intolerance to many meds and I am no exception, especially with anti-depressants & benzodiazepines.  Are any meds other than Neurontin found to be effective and well tolerated for CFS and RLS?
I have also taken 30mg Doxepin at bedtime for sleep for years.  Can that suddenly worsen the RLS?  Has the Neurontin lost its effectiveness for the RLS (it still helps tremendously with other neurological symptoms)?  Can Neurontin eventually contribute to RLS and peripheral neuropathy problems?
Finally, can the fluctuating hormones of pre-menopause increase RLS?  I am 48 and showing symptoms of pre-menopause. 
Thanks for the help on this confusing problem.

Medical Reply


Neurontin should not have any worsening effect on your RLS or peripheral neuropathy and has likely not lost its effectiveness in controlling your RLS.  It is likely that your RLS has just gotten worse or something that you are taking or doing has worsened the disease (it may be very difficult to discern what may be worsening your RLS except by trial and error).
A good choice for treating your RLS would be to add Mirapex or Requip.  Doxepin may worsen RLS, but some RLS sufferers may be helped or not affected by this drug.
RLS is associated with Chronic Fatigue Syndrome in that if sleep is disturbed (as it often is with RLS), this may be the cause of CFS (which then often resolves with treatment of the RLS).  There is no known association of RLS and Orthostatic Intolerance.
Hormones (menopause or menstrual related) may affect RLS in a small but significant percent of female RLS sufferers.


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