Patient letters on RLS symptoms and remedies- Page 49


Kicking RLS/PLMD Patient

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



Sent: Monday, July 14, 2003 12:17 AM
Subject: Are my symptoms typical of RLS?
I am a 25 year old female suffering from all the RLS symptoms I have read about however The numbness, tingling skin crawling sensations are at there worst around my groin through to my back passage and then on to my backside and back's of my legs.  But I also get the sensations in my legs, fingers, feet, face, across my shoulders, arms and my back.
I have been experiencing these strange sensations for the last 18 months and after having CT scans on my Sacral region & Spine (I have a protruding disk in my Lumbar Spine and another one around the shoulder region) and  MRI scans of my Brain - testing for MS which were all normal and showed no findings my neurologist has referred me to sleep clinic as she suspects RLS.
My symptoms are a little different to all that I have read as they are worse during the day whilst I'm sitting at work (behind a desk) driving my car , sitting down at night.  Generally as soon as I start moving around the tingling stops and I'm at the stage where I can position myself in bed so I'm comfortable and have a sound sleep ....  Until the following day when the tingling etc. etc. starts again.  I have also noticed that my  symptoms are worse when I am pre-menstrual or stressed...
I would love to hear if other RLS sufferers have experienced this and any further information that you may have !!
Thanks for your help,

Medical Reply

Your symptoms are actually quite common for RLS sufferers although there is a great variation in the way RLS manifests.

Sent: Tuesday, July 15, 2003 11:35 AM
Subject: RLS & Spinal Stenosis
You have been kind enough to reply to me several times! May I please ask you to do so once again?
A little history: Am 68 yrs.. old and have had RLS since my first pregnancy 45 years. ago.  Never doctored for it though until 3 years. ago.  Sinemet caused augmentation, Permax did nothing so am on Mirapex, taken at 7:00 p.m. and Klonopin at bedtime.  Without this help, I had an episode of restless legs every night (without fail) when I would try to relax for the eve.  Now, if I do have an episode, it is rare and usually a walk through the house and they are gone.  Ninety percent of the time, the restlessness was in my right leg or foot or both.
Now the present:
Sometime in May, while on vacation, my back became sore, just hurt to get up and down.  That left and my leg started hurting and continued too do so until I went to my PCP.  He said it was a pinched nerve.  Sent me for a physical therapy evaluation, lumbar x-rays, and an MRI and told me to contact a spine surgeon.  I did all of the above.  Took until June 18th to get in to see one.  He said that I have spinal canal stenosis. 

Recommend epidural steroid injections. We had a vacation planned for a year for a 3 week stay in Canada so we went and I just took my discomfort and pain with me.  I limp and sometimes use a cane.  The pain is with me always but is worse at times and I don't know why.  Anyhow, I sleep with a pillow between my legs, took flexural until they were gone, also took Vicodin only at bedtime because the Dr. did not give me enough to take as he prescribed being that we were gone for 3 weeks.  So, I took Percogesic during the day for my pain and saved the Vicodin for nighttime along with my Mirapex and Klonopin.

Now, I started having episodes about the second week there - just like augmentation because my episodes were during the afternoon  now AND at night!!!   Also, the restlessness was in my left leg which is the one effected by the stenosis and not in my right as before.  My left calf , 5 toes and bottom of left foot are numb to the touch but that is also where the pain is.
Sorry this is so long but there is a connection between my regular RLS and what I am experiencing now or should I say a "change" and it has a to be because of the stenosis.  I have never read a letter or any literature that has mentioned nerves as contributing to RLS - has always been dopamine in the brain or have I just forgotten - pain can do funny things to people over a period of time.  I am exhausted and pre-occupied with my pain - I know that but I like to think that is normal.  I am scheduled for a week from today for my first injection of steroids.
To summarize, am having episodes more often and in a different leg since the stenosis has come into the picture.  Have not had an episode at all in the right leg that I can remember in the past weeks.  Is it documented that stenosis can or does play a part in RLS?
If you have any question, please write me.  If no questions, please also write me and give me your comments.  We are so lucky to have you and thanks again.
Jan B. in Ohio

Medical Reply

t is common for trauma to the spine to cause worsening of RLS.  Spinal stenosis (which may not be due to trauma) may act like trauma to spine as it compresses nerve roots.  Therefore, it is most probable (but no way to know for sure) that your spinal stenosis problem has exacerbated your RLS.
It may be necessary to increase your Mirapex for this problem.  Usually the pain medications (Vicodin) relieve the RLS symptoms, so there is not as much worsening as you have noticed.

Sent: Tuesday, July 15, 2003 1:37 PM
Subject: RLS & Klonopin addiction

I was diagnosed with restless leg syndrome today by a neurologist.  I have been seeing this doctor recently regarding coming off Klonopin (3 mg per day) which I have been on for 9 years.  I was weaned off the Klonopin over a two month period and its been the worst, most confusing and disturbing time in my life!!!!!!!  Come to find out, my body became dependent on it....I had no idea it was....I was going by a previous doctor's expertise.  Although it was 9 years of good sleep, I'm convinced Klonopin was not the drug for me.

Since I've been off the Klonopin I have not slept through the night....over four months now.  My legs or arms will wake me out of an already restless sleep.  I dread bedtime....because I know I will be woken up suddenly by my legs driving me nuts!!!!  I've tried caffeine after 5:00 PM and it continues.

Some other things that I experience after being off the Klonopin are: numbness, unstable (loss of balance), fatigue (weakness), feeling of "pins & needles", itching, mild tremors in hands, difficulty walking (I have to think about putting one leg in front of each other at times). Are these associated with RLS or maybe because of sleep depravation?

The neurologist has prescribed Mirapex for the RLS but I'm hesitant because of the addictive experience I had with Klonopin.  Needless to say, I'm very cautious about any daily, long-term medication.  Is Mirapex addictive?  Does it work right away or does it have to build up in the system?

Any help will be much appreciated!!!

Thank you,

Medical Reply

It is difficult to say, but it does sound as if most of your problems are due to a combination of worsening RLS (off your Klonopin and not on any other RLS medication yet) and lack of sleep.  You should do better once your RLS is controlled and you are back to sleeping normally.
Klonopin is a very addictive drug which is one of the many reasons that I do not like to use it (there are many RLS specialists who do like to use Klonopin, however).
Mirapex is not an addicting drug and should work right away.  It should be started at a low dose to avoid side effects and gradually increased until the correct dose is achieved to relieve your RLS.  It is one of the most effective and safest of the RLS drugs available.

Sent: Wednesday, July 16, 2003 7:37 PM
Subject: Low salt diet helps RLS?

I am a 52 yr old male and  have been fighting RLS for about 4 yrs.  I didn't get a formal diagnosis until about 2 months ago because my symptoms are constant, and I was told RLS is a night thing.  You can see very clearly the muscles twitch.  I have reluctantly started taking .375 Mirapex before bed and have been doing this for about a month.  No noticeable improvement. 

On the internet I purchased a book called The Answer Found.  It made a reasonable case that RLS was caused by a high sodium diet.  My diet was very high in sodium so I reduced my intake by about 90%.  Do you know if anyone has had any success with this regime? 

It has been 8 days now and again no luck with helping RLS.  How long would it take to detoxify?  Any comments?

Medical Reply

There is no RLS patient (that I have ever heard of) that has benefited from a low sodium diet (this does help patients with congestive heart failure, however).
Muscle twitching is very different than RLS. Here are the criteria for diagnosing RLS:
1) Strange feelings (may be described as creepy-crawly, but sometimes can be actually painful) in the legs/arms which occur mostly at rest.
2) The unpleasant sensations are strongly associated with an almost irresistible urge to move the affected limb, and the movement provides temporary relief (generally, only while the movement is occurring).
3) The unpleasant sensations occur most severely in the evening and nighttime.
PLMD which often occurs with RLS consists of leg jerks and occurs mostly while in bed but can occur while sitting or resting otherwise.

Sent: Sunday, July 20, 2003 8:43 PM
Subject: RLS all over your body?
I am a 63 year old male and was diagnosed by a Neurologist with RLS about one month ago. Most RLS sufferers seem to describe the symptoms in relation to their legs and at times other parts of their body.
While I certainly experience the restless legs, however I find that I have the crawling sensation throughout my entire body and often is more pronounced in the hands and feet. This crawling sensation throughout my body comes with muscle pain and often very sensitive skin, to the point that I don't want to be touched. Restless legs is bad enough, but my total body ache at times is almost unbearable.
I have been on Requip for about 5 weeks and take 3 - 25mg. tablets at supper time and before I go to bed. It took about 10 days for me to have my first good night of sleep.
I usually rate how I feel body wise on a scale of 1-10, 10 being the worst. During any given day the above described symptoms during the day are at about a level 2-3. But because I keep busy and mobile I don't pay much attention to my aches as I have things to do. Then of course comes evening and the nights. For the first few weeks the medication kept me at an ache level 2-3, both day and night, which is quite manageable.

The past two weeks I had some awful evenings and nights (not every day) where my ache level shot up to about 7-8. This past week I had a visit with my Neurologist and he added 300mg. of Gabapentin in addition to Requip. I am to take one at bed time in conjunction with Requip if I have a bad evening. This has improved my night sleep. Yet most evenings I continue to have an ache level of 4-5.

My questions are; are more people experiencing entire body pain as I described?  As I have an ache level of 4-5 most evenings, normally between 6-9pm, does that mean my medication dosage is too low or has worn off? (I take my first dose of the day at 5:00pm)
Thank you sincerely for your help and great website.
Tony R.

Medical Reply

It is not very common to have whole body RLS but it certainly does occur in a minority of RLS patients.  RLS tends to get worse in the evening which may explain why you have your worst problems at 6-9 pm.  It does not mean that the dose of your medication is wearing off but can mean that you need a higher dose to take care of your RLS symptoms.
The pain that you are experiencing is likely the painful neuropathy that may occur with RLS in about 20% of patients.
Increasing the Requip or Neurontin (gabapentin) may help.  Another alternative would be to add a pain medication (a narcotic, Ultram or alternate the two).

Sent: Monday, July 21, 2003 1:26 AM
Subject: RLS all over my body?

I am a 35 year old woman whom suffers from RLS as well as many others I have read in your columns. It all started about 6 or more months ago in my right leg (the pins and needle, shill feelings which cause a involuntary jerking effect).  About 2 weeks later I was getting the same feelings in my left leg. I went to my regular doctor or family physician and discussed this with them. They gave me Ativan 1mg for this because it was only happening at night when I was trying to rest. Not go to sleep just yet.

They felt I just had a lot of stress due to my nursing job and being on my feet a lot. Well, needless to say, it only helped me go to sleep! They now keep me up, restless, tired the next day, etc.. I am now seeing a neurologist who prescribed me Mirapex .125mgs. and also Baclofen 10mgs at bedtime. This doesn't seem to change anything!

Actually I now have the same feelings, twitching not only in my legs but also in my arms and neck. I cry  sometimes because I feel so strange about this. I tell my better half that I think I'm retarded! I can't control this! I suffer from depression due to this as well.

Because I feel even my neurologist whom I finally got to schedule an EEG is missing something. They tell me one minute that I have Parkinson's Disease and then that they aren't sure to the blood work they done on me to rule out PD. I am so tired of these episodes. They used to only happen at rest or evenings. Now it's anytime of day.

I am glad I am not alone in this. I just wish they would find out what exactly is going on and help me. They even happen at family events. It's embarrassing! Humiliating! Please give me some advice. Also, is RLS only found in the legs or other extremities?    Thanks for listening!

Medical Reply

RLS can occur all over the body although the legs followed by the arms are most common.  Baclofen rarely helps RLS.
You should see a neurologist or sleep specialist who knows RLS. An EEG is of no help in diagnosing RLS.  It is likely that you need more Mirapex which should be increased slowly as per our RLS Treatment Page.
Ativan does help you fall asleep but usually does not do much for the daytime RLS.  It is also an addicting medication, so be careful.

Sent: Monday, July 21, 2003 7:27 AM
Subject: Requip relief!

I took Mirapex for about two years for moderate RLS.  During this time I increasingly suffered from side effects, mostly gastric reflux.  I tried Requip about a year ago  but after just one night of sleeplessness went back to Mirapex. 

Most recently the reflux seems to have caused me to have shortness of breath and short term memory loss. Researching medical sites on the internet indicates this can be a symptom of reflux. Do you think this is the case? Or could it be the Mirapex?? 

Anyway, In desperation I  gave the Requip a longer trial and those problems all went away.  The RLS is still under control and my stomach feels much better. After about a week I am sleeping well. I could have avoided a lot of suffering if I had given the Requip a better trial over a year ago.    

David  in Virginia

Medical Reply

Reflux is not a well known problem with Mirapex, but there is such variability amongst RLS sufferers (and patients in general) that all kinds of problems may occur which rarely occur in others.  The best way to prove that the drug is causing you problems is exactly what you did, stop the drug and see if you do better.

Sent: Tuesday, July 22, 2003 6:32 PM
Subject: question
Thanks again for such a great site.  Is there any information regarding the use of Topamax for PLMD?

I'm on 600 mg of Neurontin at bedtime, I was wondering if Topamax would be as effective, considering they are both anti-epileptics?  With the added benefit of possible weight loss?



Medical Reply

There is no medical literature on Topamax and RLS or PLMD.  Some RLS specialists have tried the medication with success but responses vary considerably.
Mirapex and Requip generally work better for both RLS and PLMD.

Sent: Saturday, July 26, 2003 2:34 AM
Subject: RLS and PLMD

Please tell me, what is the difference between RLS and "only" PLMD. I have PLMD, (diagnosed in a sleep labor), but I don't have jerking legs. And so I am not sure, if my sleep problem comes really from the PLMD.

Anja S.
Regensburg, Germany

Medical Reply

RLS is the feeling of creepy crawly sensations in your legs when you sit or lay down in bed.  PLMD are leg jerks that usually occur while asleep (and then can only be diagnosed by a bed partner or a sleep study).
You can have one of the disorders or both together.  About 85-95% of RLS patients have PLMD which is why they are often lumped together and the treatments are very similar.

Sent: Sunday, July 27, 2003 4:03 PM
Subject: Transderm Scop and RLS
I have e-mailed you before and your response has been outstanding. I have had RLS for more than four years. I take Neurontin 400mg 2-3 time a day starting around 5 PM. The Neurontin helps me sleep, some night I take .25mg of Clonazepam (1/2 pill) to help me sleep on bad nights.

My legs hurt somewhat most the time but I get and do something and the RLS is not too bad. I am going on a fifteen day cruse to Hawaii in September. I have heard that most sea sick pill make RLS worse. Do you have any recommendation.

Thank You for any recommendation,
Bill Benton.

Medical Reply

Sea sick pills are almost all related to antihistamines which almost universally worsen RLS.  The Transderm Scop patch (contains scopolamine which an anticholinergic) may not bother your RLS, but you should probably do a test run and take of the patch if your RLS worsens.
Domperidone (not the champagne) is an anti-nausea medication that is only available in Mexico and Canada and does not cause any worsening of RLS.  It can be obtained by mail order from Canada with a prescription from your doctor.

Sent: Thursday, July 24, 2003 3:41 AM
Subject: Long-term effects of Sinemet CR and Mirapex
My physician tells me that I have a severe case of PLMD.  Most of the time, I feel the restlessness in my legs.  I am presently on Sinemet CR 50/200 and 1200 mg. of Neurontin, all of which I take at bedtime.  I think that my neurologist's intention is to eventually keep me on Neurontin alone.  I am also taking 600 mg. of Neurontin at dinner.  Needless to say, I sleep well at night, but I go to bed very early, (8:30 p.m.), and wake up early in the a.m.(4-5 a.m).  I take .25 mg of Mirapex in the afternoon because the augmentation for the Sinemet CR is difficult to cope with.
I have many concerns:  I have tried to come off of the Mirapex, but it is a nightmare.  My entire body is in motion.  I can't settle down, although I am exhausted, but my body won't let me.
I also worry that when I come off the Sinemet CR, I'll have similar, if not worse, withdrawal.
One last question:  I understand that use of Sinemet and dopamine agonists such as Mirapex, can produce dystonia and other side effects in about ten years.  Do you agree?  If I remained on these drugs, what are the long-term side effects of the dopamine agonists?
Thanks for your time,
Nancy C.

Medical Reply

The concern about Sinemet is quite warranted.  It does cause augmentation and it is most often a good idea to see if you can get off of it.  There is less concern about long term effects of dopamine agents with RLS patients as most take much smaller doses than the Parkinson's disease patients.
Mirapex is generally my drug of choice for RLS.  It can be used alone or with Neurontin.  Whatever works best for you would be the optimal choice.

Sent: Monday, July 28, 2003 7:16 PM
Subject: RLS/PLMD medications
My husband is post stroke ( brain stem) twelve years and is now having a problem with pain on the stroke side of his body.  He developed night time RLS from the stroke. A few years later developed daytime RLS and PLMD also.  He is taking Requip for the PLMD/RLS and taking Zanaflex for the spasticity from the stroke. 

Could these two medicines in combination be causing the pain in the stroke side? Our doctor seemed to think that the two are the problem.  He also takes Darvocet for pain. Thank you in advance for your attention to my question.

Virginia B. in California

Medical Reply

It is difficult to say that the medication is definitely not causing his pain, but that would be an unusual side effect from any of his medications either taken alone or in combination.

Sent: Wednesday, July 30, 2003 4:03 PM
Subject: Neurontin - no pain no gain?

I have tried Mirapex alone, Mirapex and Vicodin, Tylenol 3s, benzodiazepines and now I'm trying Neurontin.  I have started with 100mg and I didn't sleep well at all last night.  The RLS was bad and I actually woke up after a couple of hours sleep.  I did get back to sleep but I seemed to doze rather than sleep deeply.  The twitching (PLMD) was evident going to bed and in the morning. The RLS was hard to manage all day; and I was tired as well.

I'm wondering about increasing the dose to 300mg over the next 2 nights and just tough it out. Or is this reaction a taste of what will happen in the future.  I am normally tired, but I seem to be comfortable with that.  I would like to be less tired, but it seems that the meds that I have tried, do not have the desired effect.  Do RLS meds need to be broken in like a shoe needs to be broken in or is the med supposed to provide an immediate positive response?

Please advise,
Lucy   Ontario, Canada

Medical Reply

It is often better to increase RLS medications slowly as the body may need some time to get used to the unwanted side effects of these drugs (how well patients tolerate these medications can be quite variable).  Most RLS sufferers need much higher doses of Neurontin (usually in the 300-600 mg range per dose) which often limits its use.

Sent: Friday, August 01, 2003 3:35 AM
Subject: RLS & Pregnancy/nursing

What a great site! I have learned a great deal.

I have 2 neurologists, 1 for sleep the other for MS. I have had mild MS for over 10 years and RLS for longer. RLS is by far much worse for me than MS. The sleep study diagnosed me with severe RLS., I moved my legs 79 times an hour on average but didn't feel it due to 2 mg clonazepam I had been taking for 5 years. My ferritin also tends to be around 25 on a scale where anything less than 44 is considered deficient.

We also know that my RLS wouldn't be that bad if I wasn't taking Ditropan. It is a little frustrating that I need to take meds because of another med! My RLS is so bad that when I start a family next year, I will be staying on 1 med during pregnancy. Motherisk has told me that Clonazepam is the only one that causes defects. Neurontin and Mirapex so far have been safe by what they have seen.

I cannot sleep, go to movies, have even one glass of wine.............the list goes on and I see I am not alone when reading everyone's letters! We are now at a crossroads in treatment. I have tried Neurontin, it caused my hands to shake.....I now only take 300mg at night for this reason. I have added Mirapex .125 2x's  daily. I would like to take .5 or 1 mg at night as my neurologist prescribed but the nausea is terrible.

I am also getting headaches, is this normal. I am a little scared that I also might common is this with Mirapex? Regarding Mirapex, should I add .125 daily or weekly? If it has the potential for insomnia can I take it during the day and still have a good response at night.

Is it OK to take Neurontin with Mirapex together long term? I am trying to get off of Clonazepam due to it's addictive nature but that last .5mg is hard to do! Requip isn't in Canada yet or I would try that.

Thank-you for your help and expertise!

Medical Reply

It is always best to slowly increase Mirapex, especially when having trouble (you can even increase by 1/2 of a .125 mg tablet).  Requip would be a good alternative, but of course you do not have it available.
Another alternative would be to alternate Ultram and a narcotic such as Vicodin which should safely help you control your RLS symptoms.

Sent: Monday, August 04, 2003 1:29 AM
Subject: Mirapex and Requip

I seem to be experiencing some augmentation with the dosage of Mirapex which I have increased to four 0.125 a day.  I have heard that some alternate Mirapex in some fashion with Requip.  What suggestions might you have as to how to do that? How much Requip would I need to replace the Mirapex and could I change suddenly from one to the other? I also take Prempro and Hydrochlorate, Avapro and Atenolol for blood pressure.  I am a bit unsteady on my feet sometimes. 

I read that these are side effects of these medications. Also when I awaken in the middle of the night I often take a Diazepam.  Is that a mistake to do that too often?

Marge F.

Medical Reply

It may be helpful to switch to Requip and see if that takes care of the problems that you are having.  The dose of Requip is double in mg to that of Mirapex (.25 mg of Requip = .125 mg of Mirapex).
Diazepam (Valium) can be very addictive, but is quite safe if used only a few times per week.

Sent: Monday, August 04, 2003 9:47 AM
Subject: Elastic Stocking and magnets for RLS?
I have been diagnosed with RLS through a sleep study. I have been taking Mirapex for 2 years now. We will be traveling to Hong Kong in a few weeks. The flight is 13 hours. I am concerned about the time change and my RLS and when to take the Mirapex.

I read someone had used elastic stockings with magnets,  would this help on the long flight in general? 


Medical Reply

Elastic stocking with magnets would only make it difficult for you to get through the security checks and would offer no known benefits.
An extra dose of Mirapex before flying, then repeat about 6 hours later may help.  Narcotics (such as Vicodin) taken every 4-6 hours are also very helpful.

Sent: Tuesday, August 05, 2003 4:27 PM
Subject: RLS better with epidural?
Wrote you in June about spinal canal stenosis and the difference in my RLS.  You understood me to say that the RLS was worsening.  It was not - it had just changed legs at the time of my writing.
Anyhow, I have had 2 epidural injections.  Got excellent results from the first, not much from the second.  My third one is tomorrow.
For the past two weeks, I have not had any RLS at all.  Still taking the Mirapex at 7:00 and the Klonopin at bedtime.  Am not taking any Vicodin because no pain killer is necessary at this time.
I feel that I have had probably a 60% improvement, meaning the feeling has come back into my calf and my toes  but a 100% improvement as far as the RLS is concerned.  The anesthesiologist said it is quite possible that the steroids will bring relief to my RLS and that I can get off the meds I am now taking.  We won't know for a while yet but I am thrilled. 

This stenosis takes many years to get to this point and in doing so, could have been been some of the cause of the RLS to begin with.  Take the stenosis away, probably only temporary, and the RLS could go with it.  I have never had pain with my RLS.  Just the need for movement all the time and difficulty sleeping.

Thanks.  Just wanted to share the good news,
Jan B./68/Ohio

Medical Reply

That is great news.  I have not heard of RLS getting better with epidural injections before.  I have heard of RLS getting worse with spine problems, so I guess there is no reason for the reverse to be true.  Keep us posted and we will see if others may benefit from your treatment.

Sent: Friday, August 08, 2003 1:26 PM
Subject: Cogentin & Clonazepam for extreme RLS?
Just discovered your site after researching a new treatment prescribed.  I have been on many treatment plans including, Sinemet (which was completely intolerable to my system) Xanax, another long-term, non-habit forming anti-anxiety drug (which, presently escapes my mind,)  Depakote (again, intolerable to my system.) 

After seeing three neurologist in a large metropolitan area (I live in a very isolated, rural area,) it was suggested that I take Mirapex (which I did not,) clonazepam (only) or a combination of clonazepam & Permax.  I finally went with the combination of clonazepam & Permax. 

Am now experiencing some limb stiffening, muscle cramping & right hand shaking.  Also, some mental confusion &, while not hallucinations, in the typical sense (as in "seeing or hearing" unreal objects or sounds,) none the less, feel "not normal perception."

I noted that Cogentin, which has just been prescribed, is not recommended for RLS.  I do not want to dismiss this physicians advice, since I am presenting with difficulties to present drugs.  However, I am concerned about starting a useless drug.  Any assistance would be very appreciated.

Very truly yours,


Medical Reply

There is no known report of Cogentin being used for RLS nor would I expect any benefit from using it for RLS.
The clonazepam has a very long half-life and could be responsible for your daytime symptoms. It is not a drug that I like to use for RLS as there are lots of others in the same class that work as well with a much shorter duration of action.
Mirapex is generally far preferred over Permax.  For severe RLS, pain killers such as narcotics or Ultram are often necessary and work very well and can be very safe if used appropriately.

Sent: Saturday, August 09, 2003 8:09 AM
Subject: RLS + Tramadol

The combination of Tramadol with Dopergin is wonderful: First it helps against RLS, and because You need less Pills it second is nice to Your money and third to your body. And when You do this by using a drink of an effervescent tablet of Tramadol and the Dopamin-Agonist-Tablet, YouŽll learn fast: You've got the chance to distribute this over the whole day corresponding to Your very individual needs!

My best wishes to everybody concerned with ...

Hans W.

Medical Reply

Tramadol (Ultram) is an excellent RLS drug.  It would be helpful to have the effervescent tablet here in the USA.

Sent: Monday, August 11, 2003 6:23 AM
Subject: Mirapex dose?

Can you tell me how long I should stay at a dose of Mirapex before increasing. A pharmacist told me that it will take up to 2 weeks to see the full effects of Mirapex.............he knows it is for RLS.

I now take .25mg at night for 10 days now. I started at .125. The nausea is a real bother, sometimes waking me up at night. Does this eventually go away?

Much appreciated,

Medical Reply

I have my patients increase the dose of Mirapex every 3-7 days.  At that point, things do not change much.  If the nausea is not better by now, you should try another medication such as Requip.

Sent: Monday, August 11, 2003 6:11 PM
Subject: RLS and pregnancy

I have had RLS since I was a teenager and it has driven me out of my mind.  For a time the herb Butchers Broom helped, but what really solved the problem was when my doctor gave me Vicodin for headaches.  I found it absolutely amazing and am now relieved to read on numerous sites that this is a regular treatment for RLS. 

My problem is now that I'm pregnant I really feel awful unless I take Ultram but I just read that when taken with Zoloft it has been known to cause seizures.  I have noticed I've been jerking at night, I just thought it was stress related.  I'm so afraid of hurting my baby but in the meantime I'm going crazy with RLS. 

I need to the lesser of the two evils.  Ultram and Zoloft during pregnancy or Tylenol 3 and Zoloft during pregnancy.  Please help and give me an honest answer.  I know that I should take nothing but that isn't an option.

Thank you,

Medical Reply

Pregnancy and RLS is one of the more difficult treatment problems in medicine.  If you have no seizure history, the odd of having a seizure with the combination of Ultram and Zoloft are very minimal, but of course greater than not being on them at all.  You should discuss this with your doctor.
Codiene works great for RLS but is class C only for short term so adds risk.  When the RLS is really an unbearable problem, we have used narcotic medication if the patient is agreeable.

Sent: Thursday, August 14, 2003 8:43 AM
Subject: Magnet Therapy for RLS

I read the letter and response from the person who described the relief of their symptoms by magnet therapy.  I have had the syndrome for several years and last year, just on a whim, I decided to try magnets.  For no reason at all I placed three magnets around my knee and the relief was instant.  The RLS sensations in my calf stopped immediately. 

Until recently, when I started having symptoms at night, my RLS has all occurred during the daytime, when sitting at meetings, as a passenger in cars, planes, etc. Now, before a long meeting or flight, I place the magnets and often have no symptoms even start.  If I forget the magnets, I use them when the symptoms start and 90% of the time get relief within minutes.  I carry the magnets with me at all times.

Someone once told me - If the magnets aren't working, you don't have them in the right spot.  I would suggest to those who have tried them to try them in different spots, not just where you are feeling the sensation.  That may not be where the actual source of the feeling is.  I put them around my knees for the sensation in my calf and it worked!

One thing I would say about magnets - weak, frig type magnets are not what I use.  I use strong, medical strength magnets (Magna-Bloc).

Margaret Walton,
Dundas, Ontario, Canada

Medical Reply

Thanks for your letter.  Very few RLS sufferers seem to be helped my magnets, but if a few benefit from this harmless therapy then your letter will have done some significant good.

Sent: Saturday, August 16, 2003 11:35 AM
Subject: Mirapex vs. Sinemet

I need advice:  About 6 months ago my doctor put me on Mirapex.  It worked well until about a month ago when I started getting RLS during the day, about 5:00 when otherwise I only got it at bedtime.  Then one night I took it as usual and my RLS went out of control, they had to give me valium to calm me down. 

My doctor told me not to take is any more and put me on Sinemet, even though I knew is was famous for causing the same kind of problem.  Now I am feeling fine on 2 25/100 tablets at night about 12:00.  No feelings earlier in the day any more. 

Now one of the other RLS sufferers was E-Mailing me that Sinemet is worse and I will be in trouble, to go back to the Mirapex as she thinks it could not have caused my problem.  I just don't know what to do. 

Need advice.   

Medical Reply

It sounds as if you are getting augmentation with Mirapex which occurs in less than 15% of RLS sufferers.  Often another dose about an hour before the augmentation occurs (in your case at 4:00 pm) should take care of the problem. Another solution would be to change to Requip and if that fails then Neurontin or pain killers for a while.  You might then do well with Mirapex in the future.
I would never use Sinemet in your situation and in fact use it rarely all together.


Medical Reply

Sent: Sunday, August 17, 2003 8:06 PM
Subject: Mirapex vs. Sinemet

You told me not to use Sinemet, but it is the only med that works for me.  I understand you recommend Requip, but it does not work for me at all.  Neither does Permax.  Klonopin worked for about 6 months and then nothing.  Neurontin did nothing for me at all.  What else can I do. 

I have only been on Sinemet about 10 days, two 25/100 tablets at 12:00 midnight and I am sleeping all night.  I haven't had any RLS since I went on it.  I know this may not continue, but maybe if I keep it at low doses it will last a while.  If augmentation happens is it possible that I could then go back to Mirapex and try again? 

I also had another side effect from Mirapex.  My feet began feeling numb and burning, and when I stopped the Mirapex all of that stopped.  I do not have a problem with my back but had an X-ray anyway.  Nothing.  The Mirapex did that to me I am sure. 

Where do I go from here?   

Medical Reply 

If you can keep the Sinemet at 2 tablets per day (which some RLS patients can get by without having trouble) then you should be alright.  If you start to get augmentation, then getting off the Sinemet would be very important.
Other medications that would be helpful for RLS not doing well with all the medications that you have already tried would include the pain killers and maybe other seizure medications.

Sent: Tuesday, August 19, 2003 10:40 AM
Subject: Mirapex and Ambien

Hello. Can you tell me what, if any, effect combining a bedtime dose of .375 mg. Mirapex with Ambien might have.  I have the RLS usually under control although I do wake up in the night with mild RLS sometimes.  My main problem for many months now is insomnia. 

I am lucky if I get 5 hours sleep a night, usually more like 3 or 4, and perhaps a bit of dozing.  It is as you can guess having a harmful effect on my life.  I am really fatigued a lot, and often cannot rest or nap well in the daytime. 

Any ideas?  I have tried Neurontin along with the Mirapex, and it makes me totally spaced out the next day, even at half the (300 mg) does.  Also Klonopin:  awful! 

Thanks in advance for any help you can give me, 
Gyana P.

Medical Reply

Ambien and Mirapex are a common combination that I use for my RLS patients.  It rarely causes daytime problems.

Sent: Wednesday, August 20, 2003 12:28 AM
Subject: RLS better with orgasm

I suffered through night time and sitting RLS for 35 years until I discovered that RLS occurred on the days I drank caffeine or alcohol.  I noticed that one contributor listed orgasm to relieve the symptoms, and I can vouch for that. 

Thanks for this website!

Sent: Wednesday, August 20, 2003 4:57 AM
Subject: Is Ambien addictive?


I am writing from Germany and my question is whether I can take without being anxious every night one pill of 10 mg Zolpidem (Ambien) or if I should take a holiday. The enclosed instructions here in Germany are warning of addiction  if you take the pills for longer than  2 – 3  weeks. How long can I take them ?


Thank you In advance for your answer.


Medical Reply

The official recommendation is for usage for only 3 weeks also here in the USA.  Most sleep specialists keep their RLS/insomnia patients on this drug indefinitely.  It is probably best to use take some drug holidays (one weekend every 2-3 weeks) or use the drug only 5-6 days per week.  This might not be necessary and over-cautious, but it might help guarantee that the drug never stops helping.

Sent: Thursday, August 21, 2003 5:57 PM
Subject: Mirapex and Exercise Exhaustion

Maybe you can illuminate a problem I'm having with exhaustion during exercise, which might be associated with Mirapex.  I'm a 48 year-old woman, and have had PLMD symptoms (while awake) for many years.  A couple of years ago, I was put on Mirapex by a neurologist, and it has been extremely effective at suppressing the leg movements and greatly improving my sleep. However, I've had to gradually increase the dose from .125 to the .5 dose I am currently taking as the lower doses have become less effective.  I've had few adverse symptoms though.

Concurrently this last couple of years, I've experienced a progressive decline in my exercise stamina.  I used to run 20 - 25 miles weekly, but began to have trouble maintaining that level of exertion.  I've had to modify both the intensity and duration of my workouts over time. Currently, I exercise (running or gym workouts) every other day, and tolerate that as long as I take periodic rest breaks.   I do seem to have plenty of energy for my normal daytime activities though, when I get enough sleep.  I have had some increased insomnia the last few months.  Some is self-induced as I haven't been as good about regular bedtimes; some is due to a change in my husband's sleep schedule.  I'm sure the sleep issues don't help, but I've had bouts of insomnia in the past that didn't affect my running.  Since I'm pretty dedicated to maintaining my physical fitness, this whole thing has been very discouraging.

My regular physician has ruled out exercise-induced asthma, heart disease and other problems with a battery of medical tests.  All my test results have been normal.  The cardiologist who administered my treadmill test suggested I could be suffering overtraining syndrome, but my physician is skeptical.  My own theory was that a series of chronic sinus infections was the culprit.  I pushed my doctor to keep me on antibiotics for longer periods to see if the exercise problems went away, but that was not really helpful.  (And I'm still getting recurring sinus infections every few months.)

My doctor thinks that the Mirapex may be causing the exercise exhaustion. Have you heard of this side-effect with Mirapex, especially at higher doses?  I know there was mention in the Mirapex clinical studies of daytime fatigue in some patients.  If this might be causing my symptoms, are there any other drugs that might relieve the exhaustion while still allowing me to stay on the Mirapex (like Symmetrel)?

My physician would like me to take a Mirapex holiday, to see if it makes a difference.  I've tried a couple of months ago to switch to Sinemet, but by the second night, the rebound PLMD symptoms were so bad that I went back on the Mirapex.  I was not impressed by Sinemet.  Should I give it another chance, for a longer period?  Or should I ask to try another dopamine agonist like Requip?  Also, would it be a good idea to ask for a benzodiazepine for a limited period while I try to switch meds?  Having a fall-back drug would probably relieve my anxiety about going off Mirapex and facing the PLMD again.  If I did take a drug holiday from Mirapex, how long would I have to be off before I could resume it again?

Your advice on this would be much appreciated.

Rita G.

Medical Reply

It is unlikely, but not impossible that the Mirapex is causing your problem.  Although you are taking a higher dose then you started out with, the dose is still very low compared to Parkinson's disease patients (who may take up to five times your dose). 
The only way to tell would be to stop the medication and see what happens.  This should be done with great care as there is often a rebound effect where the RLS gets much worse off the drug.  I would not consider Symmetrel (not much experience in general with that drug for RLS) and benzodiazepines may be helpful, but it may take you a week or so to adjust them to the correct dose for you.
Requip (for which you need double the dose of Mirapex in mg) can be often substituted for Mirapex, but if the problem is due to the dopamine action (rather than just a weird side effect of Mirapex) then you may have the same problem.
Hope this helps.

A Reply from Rita G.

Sent: Friday, August 22, 2003 11:56 AM
Subject: Re: Mirapex and Exercise Exhaustion

Thanks for your quick response, but I do need a clarification.  What do you mean about stopping Mirapex "with great care"?  Do you mean decrease the dose gradually?  Can I take another drug concurrently with Mirapex, decreasing one and increasing the other until I'm on the new one exclusively.  Or do I ask for an limited  prescription of an opiate or benzodiazepine to help with the transition? 

Also, is the rebound effect permanent, or does it decrease with time?  Sorry for the further questions, but I always like to know my options when it comes to medical issues.

And of course, I've thought of one more question.  Have you heard of Mirapex affecting sexual responsiveness?

Rita G.

All the things that you have mentioned would be helpful for reducing the possibility of problems with Mirapex withdrawal.  The rebound effect generally only lasts from one to a few weeks.
I have only heard a few reports of Mirapex affected sexual response (more in females than in males) and this would be a more unusual response.

Sent: Monday, August 25, 2003 1:39 AM
Subject: RLS and Neurontin/Elavil
I found your website with letters from people who describe their RLS conditions.  Mine started in earnest 2 months ago when I was on the Dr. Atkins diet...apparently I wasn't taking enough calcium supplement during that time and this may have triggered the constant RLS I now have. 
Granted, I've frequently been bothered by "leg cramps" at night and during long periods of inactivity in cars/planes but I've been able to relieve the issue with a two extra-strength Tylenols, a good rub-down with Ben-Gay and a couple of quick walks-around the house.  But now, I've established a RLS pattern which allows me 1-1/2 hours of sleep before the syndrome starts up again. My doctor's prescribed 600 mg of Neurontin and two 10 mg doses of amitriptyline to help combat it ... but, it doesn't appear to be working. 
I'm recently retired so I can afford the "luxury" of a nap during the day when I'm wiped out by a number of sleepless nights.  I wonder how others have managed with this condition during their working years...I give them credit.   Nonetheless, I'm appreciative of the information other RLS patients have offered.  It's given me some "ammunition" to work with.  .

Medical Reply

Neurontin is a good choice for an RLS medication.  If it helps (and does not cause side effects) then you may want to consider taking it every day. Elavil (amitriptyline) usually worsens RLS, although a small minority of patients may improve.
You may want to consider Mirapex or Requip which have a very high success rate in relieving RLS symptoms and are well tolerated by most RLS patients.

Sent: Wednesday, August 27, 2003 7:59 PM
Subject: PLMD
I have PLMD and have been taking 1mg of Requip per day for 8 months.  About 2 months after I started Requip, I developed laryngopharyngeal reflux.  My GI doctor wants me off the Requip for 2 weeks before he does more tests. 

Reflux is listed as an uncommon side effect but the GI doc thinks it may be relaxing the sphincter, allowing the acid to come back up.  Is this a sound possibility?  Has it happened to anyone else?  Also, how come it is not recommended to go "cold turkey" when getting of this drug.  Is the danger only to Parkinson's disease patients?

Medical Reply

We have gotten some reports of reflux occurring with Requip or Mirapex, so it is certainly possible.  Most RLS patients can go cold turkey on Requip, but a few may have a sudden worsening of their RLS by stopping too quickly.  Tapering off the drug over a few days to a week is always the safest way to do it.

Sent: Thursday, August 28, 2003 11:43 PM
Subject: Side effects with Permax and other dopamine RLS drugs
I am a 47 year old male who was diagnosed with RLS seven years ago. I have tried several medications and I am now on Permax. I have found that I have had to increase the dosage from .25 mg to about .5 mg over time.

Does Permax or other RLS drug at the dosages most commonly used cause any increase in anxiety or depression?  And what about mood swings? I have noticed I am very emotionally sensitive especially with anxiety.

What are the long term effects of taking these drugs? Do these drugs actually create or worsen the condition?  I wish there was a drug that had a short half life that reduced anxiety while eliminating the RLS symptoms and just allowed good sleep.

Thanks for your help, this condition is enough to push you right to the edge on bad nights,
Steve F.

Medical Reply

Permax and most of the other dopamine agonist drugs generally do not cause an increase in anxiety or depression but it is certainly possible that you may affected in that way.  The only way you can know for sure would be to go off then back on the drug and see if the symptoms go away then come back.
Requip or Mirapex may be better choices but if you reaction is due to the dopamine agonists, then they all may affect you.
The dopamine agonists can cause some augmentation of RLS in a minority of patients but it is more common for RLS just to get worse as you get older.  Although the drugs have not been around very long, there does not appear to be any significant long term side effects.

Sent: Saturday, September 06, 2003 1:49 AM
Subject: Occasional RLS

I am a 39 year old male who sometimes suffer from RLS.  When it does hit me, it appears to last about a week and then it will disappear for months.  When this happens, I find myself searching the Internet looking for means to get rid of these symptoms.  I've tried hot baths and Motrin and Tylenol with about 20% success rate.  It's those other times that really frustrate me.  Sometimes at the point of actually hitting my legs because I know that they're keeping me from my much needed sleep. 

Now here's the real complication.  I'm a air traffic controller who basically can't take many prescription drugs and still work.  Are there any other treatments or natural supplements that I can take when this flares up?  I've looked at the food list and I'm not consuming any of the items that you list.

Bill P.

Medical Reply

There is really nothing that works well over the counter which can really help RLS.  You have a few choices of medications for treatment of your RLS.  Mirapex and Requip are very effective RLS treatments and generally do not cause any sedation when taken at low dose (which is likely what you would need).  Ultram (tramadol, a non-narcotic pain killer) is another choice which should not cause drowsiness.

Sent: Tuesday, September 09, 2003 4:14 AM
Subject: Mirapex/jaw clenching
I am taking Mirapex  .75 mg at bedtime and have been for several years and have noticed that I am beginning to suffer from diurnal jaw clenching.  I don't grind my teeth; but I seem to be unable to control the clenching. 

Is this a side effect?   I have been on Sinemet and Permax in the past with either loss of effectiveness or side effects.

 Joe G.

Medical Reply

That is not a common side effect, but anything is possible.  It could be occurring for many other reasons, however.

Sent: Tuesday, September 09, 2003 6:51 AM
Subject: RLS

I have figured out that I am suffering from RLS. I have read that its onset may be in conjunction w/a damaged nerve.  I suffered a groin pull that became increasingly worse because I ignored it. This worsening of my groin area seems to coincide w/the onset of RLS symptoms.

I don't jerk or shake my legs but, I do suffer an incredible uncomfortable feeling in my calves, knees and quads in both legs. This occurs mostly at night though I feel lesser symptoms throughout the day. The pain in the evening also corresponds to how active I have been, how long I have walked for periods of  time during the day. 15 minutes walking around Target was a killer. I had to sit down.

I'm also suffering from some pain, right in the middle of my knee. A physical therapist said this might be tendonitis due to the groin pull. Never had any issues with my knees. I'm an avid basketball player at the age of 49.

If my RLS may be due to a damaged nerve, why is it occurring in both legs? What minimum iron supplement can I try to see if iron may help alleviate RLS symptoms.

Thanks you for your help.

Jeff D.

Medical Reply

RLS typically occurs in both legs.  It is not caused by a damaged nerve but may be triggered by trauma to the body, most often the back or spine.  Your groin pull would be a muscle or tendon strain and does not involve the nerves and should have little or nothing to do with your RLS.
Iron deficiency has been associated with RLS but most RLS sufferers do not have low iron levels. You should never take iron without first checking your ferritin and iron levels and have the supervision of your doctor.

Sent: Tuesday, September 09, 2003 11:13 PM
Subject: Drug Holiday

Thank you in advance for your wonderful advice.  I read this web site regularly and have received so much useful information .

I have had RLS for over 25 years and have been on almost all RLS drugs - some better than others.  Right now I am on Permax .05 of which I take 7 tablets for my 24/7 RLS.  I have read about the side affects of Permax and am going back to Mirapex after being off of it for l year.  In your opinion, what is the best way to switch from Permax to Mirapex with the least possible problem. ?

Rosemarie (65) Canada

Medical Reply

If you have been on Mirapex without problems in the past then the transition should be easy.  One of the Mirapex .125 mg tablets is usually similar to 1-2 of the .05 Permax tablets.  You can simply replace one with the other.
For RLS patients who have never had Mirapex before I would suggest slowly replacing Permax with Mirapex over a week or so.

Sent: Tuesday, September 16, 2003 8:32 PM
Subject: RLS help

I have read the RLS input on your web site, very helpful to me. I will share it with my family and doctor. I have some questions on my sensations I feel.

I get crawling ants and itchy feeling all over, are more pronounced in the shoulder blade area of the back, hands, face and feet. The shoulder bladed on the left side is worst with a deep burning internal itch. My lower legs and thigh get a feeling like a tingle at rest.

Sometimes  there is a feeling of numbness and at times pins and needles. This is felt mostly in the feet, legs and hands. Twitches and jerks in legs and arms.

Cramps in feet, ankles (turning up and out or turning in), toes (big toe pulls up), the upper inner thigh and calf's. I get this when sitting or laying down. Mostly in the feet at the big toe. I get most of the cramps 3:00-6:00 AM after I have been asleep. They do not go away with stretching. I have to use ice to relax the muscle and tendon.

At times I have pain in the shinbone area for a few days after cramping. Once I start getting cramps I get them 3 to 4 times, close together. I have more trouble with the left side.

I'm taking Neurontin 1200-1500 mg and using Ambien 5-10 mg to help me get to sleep. The doctor had me try Mirapex .125 mg, but I had chest pain and breathing problems. So the doctor wants me to use Permax .05 mg. This drug has a warning about valvular heart disease. My Mother has heart problems and hypertension with breathing. Would Requip be a better choice?

I took Sinemet 10-100 for a year then had augmentation and stopped taking the drug. The doctor had me try Hydroxyzine HCL 25 mg at bedtime for itching. The doctor said that the itching is not part of RLS. I took this med and it made my ants and twitches worst.

Thanks, Nancy
Stockton, CA

Medical Reply

First of all, stay away from antihistamine like drugs of which hydroxyzine (Atarax) is probably one of the worst one to make RLS go crazy (you can check our website for a list of bad RLS medications and even download a medical alert card that you can print up to carry with you to alert doctors of this problem).
I do not use Permax any longer as it is not as effective as Mirapex or Requip and has been associated with valvular heart disease (although this problem is not certain but very suggestive of being correct). 
The cramps that you are experiencing do not seem to be related to RLS.  If your Neurontin does not seem to be helping, you may want to ask your doctor to discontinue this drug.
If Requip does not help you (or side effects limit its use) then pain medication (Ultram alternating with a narcotic like Vicodin) may be a potential answer to your problems.

Sent: Saturday, September 20, 2003 2:58 AM
Subject: Pregnancy and RLS

I August 2002 I had my first child. From the beginning of the pregnancy I had trouble with restless legs. (It runs in my family and I had it occasionally during long airplane travels even before getting pregnant.) The trouble kept increasing until when I had still three month to go I broke down completely because at that point I never slept for longer than 15 to 20 minutes at a time. (Earlier on swimming in the evening had helped a bit.) My home doctor said there was nothing that could be done, and when I tried to make an appointment with a neurologist I was told the waiting list would take at least 2 months.

My complaints would usually start at about 5 in the afternoon. I would have to go to the toilet a few times, as if my bowels were the first to go crazy, and after that I would have RLS until about 11 the next morning. On good nights I would manage to stay relatively calm and stand with a pillow leaning against the wall waiting for the horror to end (weight on my legs was the only thing that kept the RLS away). On other nights I would cry, kick my leg until I was completely exhausted and covered in sweat. The endless shacking and kicking often made me fear the baby would be born to soon. My arms would also join in, but the symptoms were always on one side of my body. Usually left, but that could suddenly switch to the other side.

I then did something that I find so hard to accept myself that I don't need you to criticize me on it (I am doing that myself badly enough): I read on the internet that smoking cannabis would get rid of the RLS. It was true: inhaling two times would get rid of the symptoms for 1.5 to 2 hours.

I smoked as little as I possibly could but I felt this kind of brief relief at night saved me and thinking back on how bad I was doing before I discovered this remedy I find it hard to believe that I would have been able to carry on the pregnancy until the end without it. My son is healthy, concentrates well, is cheerful, develops well so far, will no doubt understand how I feel about what I did.

After I gave birth the RLS disappeared for about 4 months, and then reappeared. First strangely enough only when I was feeding my baby at night.  This makes me think it has something to do with hormone levels. (During the day breastfeeding would not cause RLS.) Later I had trouble almost every night. I finally had an appointment with the neurologist who gave me Rivotril (by that time I had stopped breastfeeding) which DID NOTHING FOR ME! When I got back to him he told me that if Rivotril did not help, nothing would. He advised me to avoid stress and break through the negative sleeping cycle (as he called it) on my own. He also gave me a kind of antidepressant called amitriptyline which if anything made me worse.

I gave up my part time job and my husband took care of our baby every morning when I was still too exhausted to do anything. I went from 64 kilo's to 53 because I just couldn't eat enough. (I lost my appetite completely probably because I was so tired.) Fortunately there is a relatively happy ending: my home doctor gave me Permax, which so far helps perfectly. I sleep until morning, have started eating properly again, am finishing my PhD etc. etc. It is just that I would dearly love to have another child but I am too scared. I just cannot go through that horror again. My questions (finally) are many:

Are there different causes for RLS? Does RLS during pregnancy have different causes than, say, RLS in men? Why do cannabis and dopamine-related medicine like Permax help me when Rivotril did nothing. Is this really so unusual? (And a related question: Is my neurologist an idiot?)

The fact that swimming helped me initially makes me think it has to do with blood circulation. The breastfeeding thing would point to hormones (the symptoms also diminish with the start of my period). I have read that ferritin levels may be involved: Is it true that taking iron supplements may help RLS sufferers.

But most importantly: Is there any way that women like me can be helped during pregnancy with safe medicines?


Medical Reply

There are 2 types of RLS, primary (most patients) and secondary (related to another disease like kidney failure).  Your RLS sounds typical of the primary (unknown cause) type.  RLS gets worse in pregnancy (maybe due in part to iron being diverted from the brain to the fetus) but is no different otherwise in men or women.
It is not known why cannabis or dopamine drugs help.  Rivotril (clonazepam) helps some but is a very addicting long acting drug (I personally do not like to prescribe it but some RLS specialists do) that helps some RLS sufferers.
Mild to moderate exercise help RLS (hence your swimming) but as far as we know circulation is not involved.  Hormones may have no or very different influences on RLS in different patients (can be very confusing).  Iron supplements may help but most do not seem to improve from oral iron supplements.
Pregnancy is a very difficult medical situation for RLS as there are no proven safe drugs for RLS.  The risks should always be weighed against the benefits (some have considered abortion then opted for the risky medications).  For the list of medications and pregnancy please refer to The Southern California RLS Support Group Treatment Page.

Sent: Monday, September 22, 2003 12:08 PM
Subject: RLS and medication question
Hello, I am a 29 year old female who has been suffering with RLS.  The first "episode" I clearly remember was at 18, although my mother always said I kicked a lot in my sleep as a child and was a very restless sleeper.  I have spoken to my doctor several times regarding the RLS and took Ambien for the past 6 years when the RLS was particularly bad. I never took the Ambien every night.  I was always leery of taking a maintenance medication before. 

My question concerns the Ambien.  I always had wonderful results with the medication until last year.  After my third pregnancy and weaning my son, I was glad to be able to once again take the Ambien.  The problem is it doesn't work for me anymore.  I've read that evidence doesn't support a tolerance theory, but yet that seems to be the case for me. 

The only other thing I can think it may be related to is unrelated shoulder pain I've been experiencing for the past year and a half.  Could that explain why the Ambien isn't working anymore?  As the years go past the RLS is getting worse and I will have to begin some maintenance meds I think before long.  I just don't understand why the Ambien does not work anymore.  I'm already on the 10mg maximum dosage.

Thank you for your time,

Medical Reply

Ambien rarely has tolerance problems.  You are probably quite right in that other problems (worsening RLS and shoulder pain) may be raising your arousal levels which can defeat the sleep promoting effects of Ambien.  With additional RLS medication and resolution of your orthopedic problems the Ambien should probably be as sleep promoting as it was before.

Sent: Monday, September 22, 2003 1:38 PM
Subject: Mirapex

I took Requip for two years and found that it increased my appetite and I gained 30 lbs over a two-year period.  I changed to Mirapex, 0.25 mg. twice a day and one 0.5 mg. clonazepam at bedtime,   I found it very helpful for my restless legs and does not affect  my appetite.  However, recent blood tests have shown that my thyroid level is hyper.  I have never had any problems with my thyroid.  I was wondering if either the Requip or the Mirapex could have something to do with it.

Can you answer my question?  Thank you very much,
24-hr. RLS sufferer.

Medical Reply

It is very unlikely that the drugs that you are taking are responsible for your high thyroid levels.

Sent: Wednesday, September 17, 2003 12:34 AM
Subject: Room temperature and RLS
I have had RLS since childhood. Sometimes it is better and sometimes it is worse. I am highly allergic to quinine and all derivatives.( Tonic water can help) and I don't care for heavy medications. But I have found that temperature has a great effect on RLS. 73 or 74 degrees Fahrenheit is optimal, actually the colder the better but my family complains. I find that even at 75 or 76 degrees, right away my legs start to act up. Otherwise very little problems.


Medical Reply

Temperature may affect RLS but this can vary considerably.  Most do not notice a temperature affect but while some are worse in the summer there are others who tend to be worse in the winter.  As usual, RLS patients are a very confusing lot to understand.

Sent: Tuesday, September 23, 2003 4:30 AM
Subject: insomnia

I have been successfully using Mirapex for about 4 years now, for RLS, starting from .125 mg.  up to at present ( and just recently increasing) .5 mg, taken in the evening. Lately, for maybe 4 or 5 months, I have been having trouble sleeping.  Drugs prescribed for that problem have had bad side effects, such as "hangover" effect,  etc. 

I have tried Neurontin (even at a small  dose, I felt wretched the next day, spaced out, dizzy, like a zombie!), Klonopin (horrible!) , hydrocodone, (strong mood swings after the drug wore off).  I am a fairly normal person, not one given to mood swings, etc, also not into taking so many drugs.  At this point, I hardly ever get more than 3 or 4 hours sleep, and tired all the time. 

It is interfering, as you well know, with every aspect of my life. I got a prescription from my neurologist for Ambien, it works well, I get at least 6 hours of sleep with it, but I am worried about taking it more than once a week or so, maybe twice a week, because I have read that tolerance can become a problem.  I am desperate to sleep.  Can you help?

Thank you for providing this service,

Medical Reply

Ambien is not known for causing tolerance or addiction. I have never seen anyone have tolerance problems when using Ambien yet and if used up to 4-5 times per week only it should be almost impossible to have tolerance or addiction with this drug.

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