Patient letters on RLS symptoms and remedies- Page 69

 

Kicking RLS/PLMD Patient


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

 

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Sent: Friday, July 28, 2006 12:29 PM
Subject: RLS help for problems with narcotic treatment .

I am a 33 year old woman who has experience RLS ever since I can remember. My mother, Sister, Grandmother and a few aunts all have this terrible disease. I am deathly allergic to anti-inflammatory medications (Ibuprofen, Motrin, also Aspirin), so my doctor has had me on Lortab 10's (2 pills 3 times a day) and OxyContin 40mg ( 1 pill 4-5 times a day) and have been on these for the last 3 1/2 years. I am sure you have already guessed there is a dependency issue now.

When Requip came out I was pregnant (yes, both pregnancies I was on these pain medications, luckily BOTH children are fine) so I could not take Requip. My last child is now 6 months old and I WANT TO STOP THE NARCOTICS !!! I have decided to check myself into a hospital for Medical Detox. My doctor is concerned that once off the pain meds that the Requip will not be strong enough to help, but I am deathly afraid that this too will create a dependency issues and I don't want that.

If I do start taking Requip can I wake up one day and decide I don't like the way it makes me feel and stop taking it without any kind of withdrawal or having to step down because of the potential for withdrawal???

I know my doctor had good intentions and wanted to help with my RLS and at the time I started the narcotics Requip was not around when I was diagnosed but narcotics have RULED my life for the past 3 1/2 years and I will not and cannot go from one dependency (addiction) to another.

Candyce S.
Utah

Medical Reply
 

Requip is not an addictive (does not cause dependence or tolerance). You can stop it at any time but if you do, you will need something else to treat your RLS or symptoms will immediately increase with a vengeance. Your best bet now would be to use Requip and possibly add an anticonvulsant medication (such as Neurontin or Lyrica which also have no addictive issues).

Requip (and its cousin, Mirapex) have been available and extensively used for RLS for about 8-10 years (although Requip has only been FDA approved for RLS since May 2005 and Mirapex is pending approval).


Sent: Tuesday, August 01, 2006 9:02 AM
Subject: Klonopin and Restoril together?

been taking Klonopin 1mg for restless legs.  Lately it only works %50 of time.  Any problem with combining 1 mg Klonopin and 15 mg Restoril?  Is this dangerous?

Joan R.

Medical Reply
 

Combining Klonopin and Restoril is not a good idea as they are both benzodiazepines that act on the same receptor. It would be like increasing the dose of either drug (which may lead to dependence/tolerance occurring earlier and more readily).


Sent: Wednesday, August 02, 2006 8:48 AM
Subject: RLS and sulfasalazine?

I am wondering whether sulfasalazine is known to increase the symptoms of RLS. I searched the California RLS org website but found no mention of it.

I have a sero-negative, non-degenerative, migratory arthritic condition that my rheumatologist calls palindromic rheumatism. I have been seeing the rheumatologist for about 4 years. The rheumatism seems to affect all soft tissues with some "hot" spots that swell and are particularly painful. I am taking Placquenil 400 mg per day and Mobic (meloxicam) 15 mg per day.

Due to an increase in symptoms the rheumatologist recently prescribed sulfasalazine starting at 500 mg per day eventually increasing to 2000mg per day. Since starting the prescription I have noted insomnia which the product monograph mentions, plus what seem to be an increase in RLS symptoms, particularly in the lower spine, buttocks area which coincidently is an area affected by the rheumatism.

I was diagnosed with RLS and PLMD by a sleep disorders clinic about 2 years ago. I currently take 15 mg of codeine per day (sometimes 30 mg) and Starnoc on an as needed basis. I also tried Mirapex but it made me ill.

Medical Reply
 

There is no known relationship between sulfasalazine and RLS. You may want to try Requip (at very low doses) for your RLS (it may be better tolerated than Mirapex especially if you keep the dose low).


Sent: Thursday, August 03, 2006 1:50 PM
Subject: RLS worsening?

I have RLS and under-active thyroid. I am taking Requip 3mg for the RLS. I take it before I go to bed at night and it helps wonderfully. However, I will try to rest through the day in a chair or in bed with the babies and I now have worse symptoms of jerking of the torso as well as my legs, sometimes my arms and neck. I feel that sometimes I have a twitch in my face or mouth when I talk.

Is this my RLS getting worse or side effects to medications? My thyroid medications have also been increased because it keeps getting more under-active. I am also on Lexapro for post partum depression. I am also very achy all over almost all of the time. I have spasms in my back and sometimes have what feels like pinpointed electrical shocks which are painful in my calves. Also, I feel like spiders are crawling on my legs all of the time. 

Help!
Bobbi V.

Medical Reply

The most likely cause of your problem is augmentation (worsening of RLS) from the Requip. Augmentation causes symptoms to be more intense, occur earlier in the day and the spread of symptoms to other body parts. It usually occurs weeks to months after being on the dopamine agonist (Requip or Mirapex) and gets better when off the medication (although this must be done carefully as there is a period of days to weeks with marked worsening of RLS when stopping the dopamine agonist).

It is also possible that the Lexapro is worsening your RLS (as do all of the SSRI antidepressant medications) but if this problem started before the Lexapro was started, then it is likely not the problem. It is unlikely that your thyroid medications are causing this problem as long as your thyroid blood tests are reasonably normal.


Sent: Thursday, August 03, 2006 1:50 PM
Subject: Help with Advice on Treatment Plans

I am a 60 y/o female who has suffered with what now has a name severe RLS since I can remember (it runs in my family), although I never sought medical involvement until about two years ago when I developed daytime symptoms much like the flu that were unrelenting. At that time, I held a responsible position at a company for many years and almost overnight found it affecting my productivity on the job. There were days I was so tired and sick, I would have no choice but to leave early. I also had difficulty remembering things and learning. Subsequently, I was let go from not only this job, but another job, all within 5 months.

I have a wonderful PCP who persuaded me to consult with a sleep medicine specialist and have a sleep study done. This would become one of three studies. My initial results clearly indicated two sleep disorders sleep apnea and PLMD during sleep, the latter being severe. The drugs first prescribed unsuccessfully were Dopaminergic drugs, e.g. Permax and the newest, Requip. I had adverse side affects to both. We then went with Klonopin, which I had high hopes for because it actually calmed my restless legs enough to allow me to fall asleep rather quickly, but the PLMD would interfere with quality sleep. Needless to say, even with a CPAP machine, my daytime fatigue continued.

Something occurred between my 1st and 2nd studies that were absolutely amazing. I had just recently undergone surgery just prior to the 2nd study and was taking Percocet for pain. The result of this study showed no PLMD the entire evening. My sleep medicine doctor is anti-opiod and steered clear of any discussion on the significant change in both studies. It upset me and following a discussion with my PCP (who also received a copy of the results); he prescribed Vicodin (lowest dose 1 x in the evening) along with 1 mg. Klonopin. I was a new person for about 8 months, but had heard that sleep apnea can worsen and that is just what happened. My old symptoms slowly crept back.

My question: Neither an increase in the CPAP pressure nor a dose increase of the Vicodin has seemed to help. My sleep medicine doctor would like to wean me off both the Klonopin and Vicodin and try Gabapentin. Also, I have been dealing with a family medical crisis that I wanted to mention could that exacerbate my symptoms? I failed to talk about that with my doctor.

Nancy W.

Medical Reply

Neurontin (gabapentin) may work very well for RLS and PLMD. It is certainly worth a try as it may take care of some or all of your problems (and there is no conflict with your doctors prescribing it). The major limitation of Neurontin for many is the sedation (which may be a good thing for the bedtime dose but not for the earlier daytime doses).

If the Neurontin does the trick, then you are home free. If not, then replacing it (or adding on if it is helping somewhat) a narcotic (a more potent one, such as methadone) will probably take care of your problem. Unfortunately, most doctors are very leery of prescribing narcotics even though taking one dose per day of a narcotic (even a potent one) cannot lead to addiction, dependence or tolerance (unless there is a previous history of addiction).

Stress of any kind (such as your family medical crisis) can (and will) often worsen RLS.


Sent: Thursday, August 03, 2006 10:04 PM
Subject: Requip and iron?

I have battled this RLS for some time. I first had it maybe 20-30 years ago for several years. I almost gave up riding in a car at all. It went away and returned a year ago. Now that I have a name for it at least I know I am not completely nuts. The symptoms started with sleeplessness at night only. My doctor gave me clonazepam to help with that. I felt I was becoming dependent after a few months so I stopped.

I saw ads about Requip and started on that. The nights are fine now but days would be very difficult. I saw web sites and someone suggested splitting the Requip. I did that today and took 0.5 mg at 11:30 am, 0.5 mg at 4:30 pm and will take 1 mg at 10 pm. Today was the first day in a long time I could sit down for any length of time. I have hope and wonder if anyone else has used this method. 

I also am stopping my asthma and allergy meds as someone said antihistamines can cause problems. I will start them again if needed later after I know about splitting Requip and how it works.  Would a hemoglobin of 11.7 be of any significance in RLS symptoms?

Sally B.

Medical Reply
 

Splitting the Requip dose is very common amongst specialists who treat RLS. The drug is given up to 3 times per day (as each dose generally lasts 6-8 hours or longer). You should try to determine the lowest dose needed to take care of your symptoms (sometimes, as little as .25 mg may do the trick).

Asthma medication does not interfere with RLS but the sedating antihistamines do cause problems. Over the counter (OTC) drugs that contain loratadine (Claritin, Alavert, etc.) are safe for RLS and the prescription drugs Allegra and Clarinex are also "RLS safe".

RLS has been associated with low serum ferritin levels (less than 45).  This may or may not be associated with low hemoglobin levels.  However, low hemoglobin levels are usually a good indicator that the serum ferritin level is also low.  Replacing iron in RLS patients with low serum ferritin levels may improve symptoms.

Sent: Friday, August 04, 2006 7:43 AM
Subject: Requip and PMR

I have Polymyalgia Rheumatica (PMR) and moderate, night-time RLS (the RLS came on at the beginning of the PMR). I just started to take Requip after being on Carbidopa/Levodopa for 1 year. Requip seems to be doing the job of allowing me to sleep.

However, it would appear that my PMR has come back with a vengeance. I could hardly walk yesterday. I am down to 4.5 mg of prednisone, and have been keeping the PMR at bay.  Is there any known relationship between Requip and PMR?

Virginia R.

Medical Reply
 

There is no known relationship between PMR and Requip.


Sent: Friday, August 04, 2006 10:24 AM
Subject: RLS with Narcolepsy (Mirapex and Xyrem)

Hi Doctor, thanks for taking the time to answer these emails. It is the best resource on the web for RLS in my opinion. I'm a 20 year old male diagnosed with RLS for about 6 months[ experiencing it at least since I was 15], and have been on 1mg of Mirapex 30 minutes before sleep for about 4 months. I recently had a polysomnogram and MSLT done and was also diagnosed with narcolepsy (w/o cataplexy), for which I take Xyrem (sodium oxybate) and have so far titrated up to 7.5mL twice a night. I also take 200-400mg of Provigil on an as needed basis in the morning, depending on how tired I am in the morning and how important my tasks for the day are.

I should also mention that my polysomnogram indicated no PLM's, however I slept from about midnight-6am, which is far different from my normal summer sleep schedule, which is consistent from 3am-11am, and I usually do not experience my RLS until I am about to go to sleep at 3am. Depending on the time of year and my schedule, my RLS always adjusts to starting whenever I normally go to sleep.

Anyway, I have had a problem with the Mirapex since soon after I started where it starts to wear off about 5.5-6 hours after I take it, with terrible rebound (I assume its rebound at least), where I basically end up tossing and turning in bed for the last 2 hours of my sleep since I'm too tired to get up and try to walk off some of the RLS). With the Xyrem I still no longer awaken for the 4 hours until I need to wake for the 2nd dose, but 1-1.5 hours after that the rebound still hits.

All this leads to 2 questions.

1) Although my doctor (a pulmonologist) said he didn't anticipate any interactions between the Xyrem and Mirapex, he admitted that he hasn't had a patient taking a dopamine agonist and sodium oxybate at the same time before. He actually hoped that the Xyrem might reduce my need for the Mirapex, since it would act to keep me drowsy/asleep. The pharmacists who run the central pharmacy that distributes Xyrem said the same thing about a lack of interaction, although they also said there aren't really able to base it on any experience. I was wondering if you, as an expert on RLS, happen to have had any such patients, and whether you would employ a similar course of treatment or perhaps something different that I could discuss with my doctor

2) My doctor also said that after I was used to taking Xyrem, that he would let me slowly reduce the Mirapex as I saw fit in the hope the Xyrem would take off some of the load, however reducing it even to .75 mg increased my RLS slightly. I have also tried taking a second reduced dose of the Mirapex (.5-.75mg) when I wake up for my 2nd dose of Xyrem, however I am curious about possible interactions w/ the efficacy of either medication with taking them at basically the same time (I have to take the Mirapex with very little water, as the Xyrem is meant to be taken on an empty stomach).

However, I still experience the rebound, although a little later than usual, about 2 hours after the 2nd dose. This seems very strange to me and I was wondering if it tells me anything about my RLS and how I should proceed w/ dealing with the rebound, or if there is some sort of augmentation. (For the long term I'm really just waiting for either Requip CR to come out as a stop-gap solution [since I don't need a full day of medication] until Neupro is out, where I could get a steady dose for the duration of my sleep, and then just rip the patch off when I wake up).

A.M.

Medical Reply
 

I do have several narcoleptic patients who have RLS but so far, they have done very well with Provigil so I have not had a chance to use Xyrem (and thus have yet to mix Xyrem with a dopamine agonist). There is no known interaction between Xyrem and the dopamine agonists nor I have ever heard of this problem (but, as you have already mentioned, there are not many people in your shoes). However, I would suspect that they will not interfere with each other.

The problem that you are experiencing with Mirapex is not augmentation. At first, it sounded like rebound (which generally does not occur until about 6-10 hours after a dose of Mirapex), but as your second dose of Mirapex (taken with your second dose of Xyrem) did not eliminate the problem, it is also very unlikely to be rebound (which occurs when the dose wears off). You might try taking a full dose of Mirapex for your second dose, but the .5 to .75 mg dose is already fairly high and should suffice.

What might be better would be to add a narcotic (small dose with your second Xyrem dose) or gabapentin which should abolish the RLS and allow you to use a lower overall dose of Mirapex.

I am not sure that improving your narcolepsy with Xyrem should reduce your need for RLS medications in any way.


Sent: Aug 7, 2006 7:35 AM
Subject: Help for sleeping with RLS?

I am struggling with trying to find the right meds and dosage. I am Type 2 diabetic and on Actoplus 15/500 mg,. Lipitor, 10 mg, Serevent, Singulair and fexofenadine as needed, along with multi vit, calcium and vit E supplements. I started Requip 2 mo. ago and was up to taking 2 mg at night but had symptoms during afternoon and evenings so I split them into .5 at 11am, .5 at 5pm and 1mg at 10pm.

First day or two it seemed fine. Now I am waking up several times at night with mild symptoms. I can go back to sleep but finally get up by 6 or 6:30am as the symptoms have only let me doze for the last few hours anyway. I have some muscle pain (I think muscle) in my rt. Arm and fairly often pain across the top of my left foot. I can survive with them but it can make walking hard at times. I use exercise for the arm. I try to walk 30min on the treadmill (1 miles) and stretching exercises for 30 minutes daily split into am and pm. average 5-6 days a week.

Should I ask to increase my evening dose of Requip, should I ask to keep it the same and take something like Ambien CR for the sleep or are there any more suggestions you may have. I was having so much hope when the splitting worked at first I hate to lose ground. Thank you for your help.

Sally

Medical Reply

Both the choices that you have mentioned are good one. I would prefer increasing the last dose of Requip (slowly) until you can sleep through the night.


Sent: Aug 7, 2006 1:28 AM
Subject: Help for RLS?

I'm a severe sufferer of 10 years and at only 28 years old, its having a mass impact on what should be a happy time. My legs ache from bottom to the top and from the front to back, day to night! I can never sleep and even the strongest of sleeping pills do not work as the ache is stronger than the sedative in the sleeping pill. I've tried herbals, vitamins, acupuncture, magno therapy, paracetamols, general ibuprofen creams etc.

The only thing that ever worked was Kapake but due to the cost on the market, chemists no longer stock it. The sensation is like a dull un-painful ache deep inside my legs, its feels like there's billions of bugs crawling but there's so many i cant feel individual foot prints, just like a mass of irritation. Exercise, hot water, cold water you name it, I've tried and still no good. This weekend was horrendous, I've had about 4 hours sleep since Friday and I feel awful, there even aching now.

Luan

Medical Reply

It does not sound like you have tried Mirapex or Requip yet, then you should. You can see a sleep specialist or neurologist but any doctor should be able to prescribe Requip now that it is FDA approved for RLS.


Sent: Sunday, August 06, 2006 10:11 PM
Subject: Requip and insomnia?

i was taking Restoril for restless legs. my doctor suggests Requip. I have been taking re-quip for 5 days, it gives me insomnia and the Restoril does not work. Any suggestions?

Joan R.

Medical Reply

Insomnia is a side effect of Requip.  If you are on the lowest dose (.25 mg) then you may want to try another medication (such as Mirapex).


Sent: Friday, July 07, 2006 11:46 AM
Subject: Marijuana and RLS

I recently only realized that the "kicking" in the night was an actual disorder that I had been dealing with since my youth. I always just thought I "rode a bike" in my sleep because I'm strange or something. I am now 23 and the RLS has gotten more severe.

Recently, if my husband tries to sleep close to me I get really "ticked out" and start kicking and riding my bike like crazy. I feel almost claustrophobic. Even if he rest is arm over me it feels like a 20 ton weight is on top of me.

Is this from the RLS, or something else??  By the way, I sometimes smoke Marijuana before going to bed.

Hiliary B.

Medical Reply

It is hard to say whether or not the claustrophobic feeling is part of your RLS or something else.  Many RLS patients do get a claustrophobic feeling when restrictions (such as your husband's arm) are placed on their physical ability to move.

Interesting, smoking marijuana generally abolishes the RLS symptoms and the PLM (leg kicks).


Sent: Sunday, August 06, 2006 8:43 PM
Subject: RLS questions about Requip, RLS and hormones

I am on Loestrin FE (birth control) and was wondering if this is effected by Requip?

Also, I have been taking Requip for about two months now and it seems like every two weeks I have to up the dose because of getting RLS back. Currently started the 3mg from 2mg and it made me quite dizzy with this change.  I didn't have that side effect as bad with the other dose increases.

Does this mean it is not working for me?  Do I continue raising  the doses as needed?  Will the dizziness go away?  Should I try  something else? Another concern is if I switch what is effective without effecting birth control pills?

Medical Reply

Most doctors would have raised the 2 mg dose to only 2.5 mg (I am even more conservative and may have only increased to 2.25 mg).  The slower the increase in dose the less likely side effects will occur.  You will most likely get used to the drug and the side effects will go away.

The birth control pills change the blood levels of Requip, but as long as you are on a steady dose of the birth control pills, this should not be a concern.


Sent: Monday, August 07, 2006 1:12 PM
Subject: Requip, and no sleep

I have a couple of ?'s about Requip.  I have been taking it for several months now, and it has helped with my RLS.  I was suffering from extreme sleep deprivation and going days without sleeping at all because of my leg pain, until I finally went to my PCP.  She RX the Requip, and I went thru a series of doses to determine the better one for me, the smallest dose was ineffective, the mid one helped enough and that's what I'm taking, the highest dose made me very nauseated and vomited every night.

I haven't had as much trouble falling to sleep since Requip, however I have had a couple of episodes where I've went 24 hours or more without sleep. The Requip was making me so sleepy that I couldn't hold my eyes open, yet lately in the past couple of weeks, it seems as though it is having the opposite effect, I can't fall asleep.

 A week ago, I started Zoloft, and I take both the Zoloft and Requip at bedtime, and I feel like I am smothering, and I am now having even more difficulty falling asleep, I got 3 hours of sleep last night, the smothering is worse if I'm lying down and I get a headache, and just feel terrible and weird. I was wondering if the 2 RX combined could be causing this?

Any assistance with this matter would be greatly appreciated.
Tonya P.

Medical Reply

Requip has been associated with both sleepiness and insomnia (hard to know why it can produce two such opposite effects in different people, or even in the same person as in your case).  Adding Zoloft should not really worsen the insomnia problem but that may be what is occurring with your case.  You may be having an unusual reaction to this combination of drugs.

The other possibility is that the Zoloft (like all the other SSRI antidepressant drugs) is worsening your RLS.  The only effective antidepressant medication (and I am assuming that your were prescribed the Zoloft for depression or anxiety, not just for insomnia as it is not an insomnia drug) that does not worsen RLS is Wellbutrin. If you need a sleeping aid, the non-benzodiazepine drugs, Ambien, Lunesta or Sonata are the preferred choices.


Sent: Tuesday, August 08, 2006 10:23 PM
Subject: Serotonin and RLS?

I haven't posted here for a long time.  Ultram seems to be my cure.  I take 50 mg twice a day.  I've never had to increase the dosage.  (If I forget to take it, my nightmare RLS reminds me why I take it!)  My entire family has problems with serotonin.  Most are taking anti-depressants successfully. I've been lucky not to suffer with depression, knock on wood. 

For me, it seems logical that my own serotonin problem would be my life-long, severe case of RLS.  Since Ultram works with Serotonin, it appears that is why it works so well for me. 

Has a lot of research been done on this brain chemical in relationship to RLS and PLMD?  And should there be more research done in this particular area?

Pat T.

Medical Reply

Actually, drugs that increase serotonin (the SSRI drugs which block the re-uptake of serotonin thereby increasing their levels), generally worsen RLS.  It is not really understood how Ultram works for either pain or RLS. Ultram does inhibit (very mildly) the re-uptake of serotonin and norepinephrine (like the SSNRI drugs) but it is not clear whether this is a very significant effect.  As this drug helps RLS, it is less likely that the serotonin effect is that clinically relevant.

Research is being done on the brain chemicals and RLS but it is still in its infancy and there is a lot more to learn (clearly).


Sent: Tuesday, August 08, 2006 9:24 PM
Subject: Re: RLS update (see previous letter Tuesday, July 25, 2006, Page 69)

OK, I saw a neurologist today and I do not think it went well. She would ask me a question and then cut me off and asked something else before I could finish. I wasn't even able to fully describe my pain or all the places in which I feel the pain!

I told her I have been on oxycodone for just over a month and she almost fell out of her chair! This I took as a bad sign being as she is also board certified in pain management in addition to neurology.

She wants me to start taking Lyrica and stop the oxycodone. I was also sent for some blood work and will see her again in three weeks.

So far I am concerned about the things I have read on the Lyrica. I think any medication with a full page of side effects should get pulled. The impression I get is they tweaked a molecule or two in the gabapentin and whole....Lyrica and exclusive rights ($$$). Like the gabapentin, not one study to support its use for RLS.

So my question is...what do you know, and think about Lyrica?

I started my use with 25 mg at 1430 hours and then 25 mg before bed. I know this is low but thought I would build-up since I had a bad experience with the gabapentin. First days result....goose egg! One step forward and two back.

Roscoe C.

Medical Reply

Lyrica is a reasonable choice for RLS.  It is different then gabapentin and some patients may do better with it (and of course, vice versa).  There are several studies on gabapentin and RLS but none so far (to my knowledge) on Lyrica and RLS.  The side effect profile of Lyrica is similar to other anticonvulsant medications but I have found it to have somewhat less side effects.

You will likely need a higher dose of Lyrica and should continue before you give up on this drug.  It may be that the narcotics are the only drugs that will take care of your RLS symptoms.  It may also be very hard to find a doctor willing to prescribe the appropriate painkillers for your RLS.

A Reply from Roscoe P.

Sent: Sunday, August 13, 2006 9:21 PM
Subject: Lyrica side effects???

I have been taking Lyrica for one week now and have gotten chills and about three or four nasty headaches. I think the headaches are related to the Lyrica as I almost never get headaches and can't remember the last time I had one prior to this last week. Do you think I should keep at it or stop taking the Lyrica???

(I have only been taking 25mg during the day and 50mg before bed. I have still had to use my oxycodone as the Lyrica so far has not helped much for the pain).

Any opinions on acupuncture???

I would also like to know if you think it is safer to be on opiates long term or any of the other medications used for RLS???...it seems like long term one may face more health problems from the other meds versus the opiates.

Roscoe P.

Medical Reply

Those are unusual side effects for Lyrica as this drug often helps headaches (especially migraines).  The only way to tell if it is indeed responsible for these side effects is to stop the drug and see if they go away then restart Lyrica and see if they come back.

Acupuncture has not been shown to be helpful for RLS.  We have gotten a few reports of patients improving with this treatment but that may likely be due to the very strong placebo effect associated with all RLS treatments (including sleeping with soap in your bed sheets).

Low dose opioids are probably amongst the safest long term treatments for RLS.  They have been available much longer than most all the other drugs used for RLS and thus have the longest track record.


Sent: Thursday, August 10, 2006 11:37 AM
Subject: PLMD and Alpha Wave Intrusions (AWI)

Is there a correlation between PLMD and alpha wave intrusions?  Based on several PSG's (overnight studies) I have severe PLMD 125/hr and heavy alpha intrusion.  The doctor's report says my AWI is "non-specific", which implies that they are not associated.  But my non-medical school gut tells me that they must be associated with each other.  So I am confused.

Everything I am finding about alpha wave intrusions is that there is a correlation with Fibromyalgia or chronic pain, which I don't have.  I am fairly informed as to what AWI is, but I am having hard time trying to figure out the "why" in my case.  Any info you have on causes of AWI other than Fibro/pain, would be appreciated as well, although I realize this is a RLS/PLMD site.

Kaman S.

Medical Reply

AWI is not well understood.  It appears in several conditions but as we do not know exactly why, we can only say that there is a correlation between the disorders and AWI.  You may be right about PLMD and AWI having something to do with each other but no one has yet to explore this adequately to find a link.  The non-specific nature of AWI does not imply that there is no association with PLMD but rather that it occurs in several conditions. Perhaps all the conditions share something that causes AWI to occur.


Sent: Thursday, August 10, 2006 9:07 AM
Subject: Drug holidays for Requip?

I have read about drug holidays.  I am currently on Requip this last month. It is working pretty well as I take 0.5 mg. around 3 pm and 1.5 mg around 9pm. I am going to try to drop the 1.5 mg to 1.0 mg and see if that is still ok. Does Requip need a drug holiday?

I really appreciate this site and all the useful information available. 
Sally  B.

Medical Reply

There is no need to take a drug holiday from Requip (unless the drug is causing problems such as tolerance).  It is always best to use the lowest dose that relieves all your symptoms (thus your trial of a lower 9 pm dose is reasonable) but make do not decrease your dose too low such that it no longer relieves all of your RLS problems.


Sent: Thursday, August 10, 2006 6:03 PM
Subject: Weight gain and Requip ?

I have been taking Requip for my RLS and have had a ten pound weight gain. According to the pharmacist, Requip should not affect my weight.  But I'm exercising and watching my diet and still gaining weight. 

Please help!
RTM

Medical Reply

Weight loss and weight gain have both been reported to occur on a very infrequent basis with Requip.  However, weight loss is the more common of these two uncommon side effects.  Your problem may be indeed due to Requip but it would be worthwhile to check for other more likely causes.


Sent: Thursday, August 10, 2006 10:39 PM
Subject: Soap in bed for RLS?

I heard about putting a bar of soap under your fitted sheet towards your legs/feet. I tried it and it seems to help. My only thought is that it is there for my legs to subconsciously move and feel around and let my mind rest and think that my legs are doing something constructive other than just laying there  waking my mind to make them move to stop the symptoms.

What do you think of that  hypothesis? No harm done. I suggest everyone to try it.  

Medical Reply

Check our website for several letters regarding the "soap trick" (it has been around for years).  It has been mentioned in the popular press for several other disorders and seems to have a good "placebo effect".


Sent: Thursday, August 10, 2006 8:43 PM
Subject: RLS, MCTD (Mixed Connective Tissue Disease), Neuropathy?

I was diagnosed with MCTD (Mixed Connective Tissue Disease) 10 years ago and I am currently taking 200mg of IMURAN daily. I also take .5mg of Mirapex twice daily for RLS and feel the need to use the Mirapex earlier and earlier during the day.  I was previously only taking early evening and bedtime. My body now tells me I need the Mirapex by 1p.m.  I have also developed neuropathy in one foot (burning, numbness of four toes, and pain) - my podiatrist has suggested LYRICA. 

Are all three problems related? can I take LYRICA along with MIRAPEX and IMURAN?  The Mirapex not only keeps me still but also takes away some aching and pain (not sure if it is supposed to do that or if I just got lucky).  I have also been on Neurontin in the past but felt really groggy when I awoke so I decided to come off of that.  I take the following medications on a daily basis:  200 mg Imuran, .5 mg Mirapex twice daily, 40 mg Nexium, 2 Tessalon Pearls (cough) daily, 2mg Lunesta at bedtime, 2 Caltrate supplements daily. 

Theresa P.
Chicago, IL

Medical Reply

It is likely that you are experiencing augmentation from Mirapex.  This usually first results in earlier onset of RLS symptoms.  If that can be handled by taking earlier (and/or split) doses of Mirapex then it should not be a big problem.  If the RLS symptoms worsen (become much more intense) or spread to other body parts (usually starting with the arms) then changing Mirapex to another drug should be strongly considered.

The neuropathy that you are experiencing may be associated with RLS in which case it is often improved by Mirapex.  The anticonvulsant medications (Neurontin, Lyrica, etc.) are usually very helpful for this neuropathy. Individual response to these anticonvulsant medications can vary considerably (for both effectiveness and side effects) so it is worth trying several to see how they work for you.  For many, Lyrica seems to work better, so it may be worth a try.


Sent: Thursday, August 10, 2006 10:19 PM
Subject: Help going off Mirapex

I have been on Mirapex for RLS for around 3-4 years, and I am wanting to go off due to severe problems with compulsive behaviors.   I am going to try Topamax instead.  My doctor has been having me titrate off Mirapex slowly, but I think I am experiencing terrible rebound effects.  Either that or I am just going crazy.  I feel nauseous and disoriented, not to mention the RLS has returned with the power of Genghis Khan. 

Can you tell me what kind of side effects to expect from going off Mirapex, how long the side effects might last, and what I could do to help alleviate these effects.  I noticed in some of the letters you recommended taking methadone for a little while, but I really don't want to do that.

Diana L.

Medical Reply

Generally, only marked worsen of your RLS (which you clearly have noted already) is the problem with stopping Mirapex abruptly.  The other side effects that you are experiencing may be due to the worsening RLS or may just be unique to you.

I do suggest a strong narcotic to get over this rough period and if methadone does not suit you, others such as oxycodone, hydrocodone, etc. should be considered).  Topamax is a reasonable choice but there is much more experience (and success) using other anticonvulsant medications such as Neurontin or Lyrica for your RLS.  You may want to start these before stopping the Mirapex so that the withdrawal problems with worsening RLS can be muted.


Sent: Sunday, August 13, 2006 9:44 AM
Subject: Restoril drug holiday?

I have been taking Restoril for several years, 22.5 mg every night. It seems to control my RLS at night, though I still wake up a lot during the night, but not usually with leg discomfort.  I still have leg discomfort it in the evening, but can control it then by not sitting with my legs up.  My legs also ache whenever I stand still, or walk very slowly (as in a museum) and are relieved then by sitting down.  I am curious if this symptom is ever associated with RLS or is something else entirely. 

Also, I am wondering if I should be taking drug holidays from the Restoril and if so, how I could do it.  I had thought i could gradually lower the dose of Restoril, take Ambien as needed, and then after being off the Restoril for a couple of weeks, take it again with regular holidays, taking Ambien during the holidays.  I have taken Ambien in the past and prefer the Restoril because of some strange, but not severe, thought distortions on the Ambien. 

Barbara S.

Medical Reply

The aching in your legs when you stand still or walk slowly that is relieved by sitting is clearly not RLS.  Symptoms of RLS occur only at rest and are relieved by walking or other movements.

Many people can take Restoril (or other benzodiazepines) for years without developing dependence or tolerance.  However, a significant percentage who use these drugs regularly do develop those problems (and we cannot tell who will or won't until it is too late).  If you use the Restoril only 3-4 days per week, it would be very unlikely that tolerance/dependence will ever occur.  It is not known whether using Ambien on the other nights (or otherwise alternating it with Restoril) will prevent problems from occurring as they both act upon the same receptors (only Ambien acts more specifically on only one of the 3 benzodiazepine receptors).


Sent: Monday, August 14, 2006 9:44 AM
Subject: PLMD and Alpha Wave Intrusions

Thanks for your response. I had an appointment with my neurologist today, and she is trying Lyrica in addition to Mirapex (.50 mgs) I am currently on. She told me in previous appointments that she didn't think Neurontin was very effective, so she doubled it to 1200 mg for about 3 weeks (as a last-ditched effort I guess), and then discontinued Neurontin altogether when no improvement was needed.

Now a week after no Neurontin, we are trying Lyrica. If Lyrica is basically "Neurontin version 2", I am curious why she is trying it. I know this sounds incredibly cynical, could it be that Lyrica is brand name and I was taking Neurontin generic (gabapentin) before? I actually like my doc, and she takes her time with me and answers my questions. But I am a little confused with this move. I expected her to go with a benzo or some other class of drug. She is shying away from anti-depressants, since she said that they tend to increase leg movements.

Also, concerning the alpha sleep, she said that the issue was more of me sleeping through the alpha sleep (and not waking up as much), rather than trying to promote delta sleep. She said little or no delta sleep is more the norm as we age (I'm 36 and male). They kind of sound like the same thing to me, but she said promoting delta sleep is irrelevant in my case. Do you have any thoughts on sleeping through alpha sleep vs promoting delta sleep? Are they the same or are there subtle nuances between these two concepts?

And, by the way, I am taking Ambien CR (12.5) for about 2 1/2 years now, and still taking it.

KS

Medical Reply

Lyrica is not related chemically to Neurontin and is only similar in that they are both anticonvulsant medications. Often, only one or a few of the many anticonvulsant medications may work in a given individual. It is worth trying the Lyrica.

Delta (stages 3 and 4 deep sleep) sleep is usually present until age 50-60 years old but may not appear on a patient's first night in a lab (especially if they are uncomfortable in the sleep lab). We sleep specialists are really not sure what to make of these findings (low delta sleep or alpha wave intrusion) so I would not give this much thought (as it will not help you in any way as it is all very theoretical and no one knows what to do with this information). The delta sleep and AWI are two completely separate issues, however.


Sent: Monday, August 14, 2006 5:35 PM
Subject: Help with PN (peripheral neuropathy) and RLS

I am 44 year old female, with PN (idiopathic with high suspicion of it being hereditary). My earliest memory of RLS was when I was 7 (mom was in hospital with brain aneurism, so I can remember that). I have tried Mirapex and it causes me to be nauseous, I have also tried Requip, it never has helped with the creepies but I do (did) think it helped with the PLMD or I at least thought I woke less, I am still taking .5 mg. at bedtime and the same in the afternoon. I had taken more with no relief of the creepies. I

n addition to the Requip, I take1mg. Lorazepam, and 60mg. codeine at bedtime, I also take Ultram or codeine during the day on a as needed case for the PN, but take it more for when the RLS sends me over the edge during the day. Anyway this past week the RLS/PLM is doing its best to do me in! Its 24 hours, I wake often, nothing is helping, due to being tired I am twitching and jerking more during the day. In the arms and legs and I feel short of breath and nervous and wound up.

I see a sleep doctor, but he doesnt really put himself out for the RLS sleep apnea is life threatening and RLS is a nuisance! 3 years ago my sleep study showed apneas 28 times an hour and myoclonic jerks 87 times an hour with arousals 29 of those times. (how does that score?)  I had a dental procedure last October and took the last Percocet last night the script was for 20 of them so I dont abuse. I just want relief and to quit living this hell on earth.

Carol

Medical Reply

It sounds as if you may need to change to a higher potency narcotic, such as the oxycodone in Percocet (although I prefer using methadone). It may be beneficial to combine this with an anticonvulsant medication (such a Neurontin or Lyrica) which may benefit both your RLS and peripheral neuropathy (I am assuming that PN stands for peripheral neuropathy).

A Reply from Carol

Sent: Friday, August 18, 2006 6:33 AM
Subject: Help with PN (peripheral neuropathy) and RLS

Well I went to my sleep doc In Columbus he wants to try me on Dostinex. Doesnt like the idea of a stronger narcotic, even after telling him how well the percocet worked. I hope this Dostinex works, if not, well fork me, Im done!

Carol

Medical Reply

Dostinex may work well but it is very expensive here in the USA and generally not covered (for RLS) by insurance companies. It can rarely cause valvular heart disease (as do all the ergot derived dopamine agonists) so a yearly echocardiogram should be done to assure that no problems are occurring.

If the Dostinex does not work for you, then you need to seek out a doctor who can prescribe medications that do help your RLS.


Sent: Tuesday, August 15, 2006 1:30 AM
Subject: Need help for my GP to prescribe Requip

I went to see my GP yesterday and requested Requip, he said he'd never heard of it so checked his book. He said there's 6 doses stated so wasn't sure which I wanted, he asked me to speak with you again. What dose do you usually prescribe?

Regards
Lu

Medical Reply

Tell you GP to look in an updated PDR and look in the section for RLS. It goes over the dose ranges. There is also a Requip starter kit that also makes it very easy to start on the drug.

Generally, start with the lowest dose (.25 mg, one hour before symptoms occur or before bedtime) and increase by .25 mg every 5 days until symptoms are relieved (the starter kit does it somewhat differently).


Sent: Wednesday, August 16, 2006 1:40 PM
Subject: RLS or what is this?

I am a 52 year old male. Three years ago, I was diagnosed and had RRP surgery for prostate cancer. Since surgery, my legs have been a problem. At first, I would wildly kick according to my wife. Mirapex took care of that problem. I currently take Requip and I make it through the night successfully.

My problem comes about 7:00 PM each evening. I try to sit down to read or watch TV and my ankles are tense and need to constantly be flexed. I absolutely cannot get any relief. I cant read or focus on anything not because of the pain but aggravation, this has driven me to tears many evenings. Throughout my work day, I have tried different routines of walking and sitting. I wear quality socks and shoes.

Should I take the Requip earlier in the day? I have cut out caffeine and alcohol. I am open to any suggestions.

Max P.

Medical Reply

There are two possible solutions to your problem.

1) Take the Requip at 6 pm and that should resolve your evening and bedtime RLS problems.

2) If taking the Requip earlier causes problems with middle of the night rebound of RLS (due to the Requip wearing off) then a split dose of Requip should work ( a smaller dose at 6 pm and a repeat dose just before bedtime).


Sent: Thursday, August 17, 2006 6:48 AM
Subject: RLS??

About two years ago I started having problems with both feet. Mid-day the bottoms of my feet would begin with a sensation of burning. Later in the day every step feels like a mini-explosion. The pain could best be described as if someone beat the bottoms of my feet with sticks a few days ago, or as if they had been frozen and were defrosting. At rest the toes feels as though they are twitching or want to twitch. Relief seems to come when I tap my feet on the floor. At rest I continuously and purposely move my feet against each other which brings some relief. Just prior to falling asleep I have body twitches, shoulders, arms, legs, feet, and even head.

Extreme fatigue during the day. My sleep pattern is all over the clock with a few naps during the day which I was thinking might be a side affect of Cymbalta prescribed for fibromyalgia. I have much pain through the body, joints and tendons with no signs of arthritis with the exception of advanced osteoarthritis of the spine and/or degenerative spine disease.

Describing the symptoms and feeling of sensation to my doctor generally has produced a confused or questioning look. A pain specialist suggested an anti-depressant such as Cymbalta as it is thought I have fibromyalgia.

Descriptions of RLS symptoms seem to best describe what I am going through although I don't have restless legs. Based on the above do you think I could have RLS?

Jim J.,
Oregon

Medical Reply

You do have many RLS like symptoms. The concern is that RLS symptoms occur only at rest and get better with movement. Your discomfort with walking is not compatible with RLS. It is possible that you have some sort of neuropathy that is causing the abnormal sensations with walking and perhaps some separate problem with RLS that is relieved by movements of your limbs. However, we usually do not like to postulate 2 separate problems when one disorder causing everything is more likely.


Sent: Thursday, August 17, 2006 8:37 AM
Subject: Ambien and Requip?

I am wondering if I can take Requip and Ambien together to get a good night's sleep. I have RLS, it flares up every once in a while during my sleep to make it impossible to have a good nights sleep. I wake up tossing and turning several times through the night. Last time this happened my Dr. prescribed Neurontin. It seemed to work, got through the flare-up and hadn't used it since.

This time the doctor said to try Requip. I went through the first trial pack with little change. Continued on the high dose of the starter pack for almost three weeks now, with maybe slight improvement. Went back to the Dr. to let him know it maybe wasn't working for me, he said then I must not have RLS, just insomnia, and prescribed Ambien. My first night taking the Ambien and no Requip, I had more RLS leg movement then ever. It wasn't tossing and turning, it was the typical non-stop leg movement and stretching to try and relieve the sensation.

So, after a couple hours of trying to sleep with that going on, I popped up and took a Requip. I slept well after it kicked in for the rest of the night. Just wondering if it is okay to take the two? Also wondering if suddenly not taking the Requip caused my RLS symptoms to go through the roof? Just wondering about the drug interaction because I took a Benadryl and Requip just prior to a redeye home a week or so ago and I got amazingly nauseous and drowsy. I couldn't keep my eyes open and thought I was going to end up getting sick on myself. Luckily the stewardess came by with a coke and that seemed to settle my stomach as I drank it with my eyes closed.

Just don't want to hurt myself if Ambien and Requip aren't compatible and don't want to bother my doctor again.

Jennifer S.

Medical Reply

We often prescribe Ambien together with Requip. This combination may only be a problem in a very small minority of people who are very sensitive to the hypnotic effect of Ambien and have sleepiness as a side effect of Requip (in which case they may end up groggy in the morning).

Beware of Benadryl as it most often worsens RLS dramatically.

The worsening of RLS may have been due to stopping Requip. It may be worth trying Mirapex (similar to Requip but may act differently in any given individual) to see if that helps your RLS more effectively.


Sent: Sunday, August 20, 2006 2:13 PM
Subject: Mirapex and Darvon

I was embarrassed to ask my physician to "please" increase the prescription for Mirapex from one to two 0.125 pills per day. But I am now even uncomfortable during the day (when I'm not at work, as systems analyst focused on the computer). Recently, I went to the Emergency Department after contracting a severe, dysentery-like flu. I was prescribed Darvocet and, after cautiously trying it, for acute abdominal pain, I noticed that I slept splendidly on this medication-- I actually had dreams and awakened refreshed, as I haven't felt in 10 years! (I am a 51-year-old female who is, otherwise, in excellent health)

This worried me some, knowing it was a narcotic, but now it makes sense! Neurontin didn't work that well for me, Mirapex does much better, though I am now taking THREE .0125 pills per day and waiting to get the okay for this new dosage from my physician. I think I need to start taking it during the day, also to avoid the "ramping up" that occurs in the afternoon, as I prepare for another miserable night. Then maybe I could be comfortable reading and taking a nap during the day-- right now that is impossible, the restlessness in my whole body (not just legs, alas) does not allow this luxury.

Do you think I should ask my doctor for Darvocet, for bedtime, or ramp up the Mirapex?

Barbara

Medical Reply

The only concern about increasing your Mirapex (your dose is still quite low to average) is if it is resulting in augmentation (causing your RLS to occur earlier in the day and perhaps more intense). If that is not the case (that is if your RLS was always occurring in the afternoon) then increasing the Mirapex and using split doses (twice daily) would be very appropriate.

Painkillers work great for RLS. Darvon would be better than Darvocet as it contains no acetaminophen (Tylenol) which has no role in RLS. Ultram is another very safe (and essentially non-narcotic) alternative painkiller that also works very well for RLS. These pills can be used together with Mirapex and are especially helpful when trying to keep the dose of Mirapex down (as with side effects or augmentation).

A Reply from Barbara

Sent: Friday, August 25, 2006 11:31 AM
Subject: Re: Mirapex and Darvon

One more thing-- I am having more daytime restlessness now-- that is true. I am unable to relax--to be recumbent for long-- and read a book or nap on the weekends. A major joy in life, so I miss this. So, you are quite right-- the daytime problem has worsened at the higher dosage.

Barbara

Medical Reply

Split doses will probably work very well. However, if the RLS continues to occur earlier in the day, then consider changing to another class of medication.

Painkillers (even potent ones like hydrocodone or methadone) cannot cause dependence or tolerance if taken only once or twice daily (except of course in patients with a history of drug abuse).


Sent: Wednesday, August 23, 2006 3:54 PM
Subject: Involuntary leg jerks while awake prevent sleeping/PLMW (Periodic Limb Movements during Wake)?

First off, thank you for all your time on this website. What an incredible resource! Ive spent the last 4 hours reading peoples questions and your answers. Ive never bumped into such a wealth of info for complex RLS/PLMS problems (and Ive read a lot). Many thanks!

My situation: Ive dealt with jumping legs for the past 10 years. Im 48 years old, male, 6' 5", 190 lbs, otherwise healthy. I dont get the RLS crawly sensations, but involuntary jerking prevents me from sleeping. This kicking, mostly in my right leg, worsens with fatigue and at night. When it gets bad it happens during the day as well. I fall asleep to it and wake up to it in every day. Ive managed it over past 10 years with a variety of meds (e.g. Ambien, Sinemet, Klonopin, Keppra, Mirapex, Permax, Neurontin, Oxycodone, Requip, and in combinations).

The pattern seems to be meds will work for a year to a year and a half and then fade. For past 6 months, Ive been in a tailspin. I get about 3-4 hours of sleep, can only work half time, am permanently fatigued and bone-tired. If I lay down for a nap, my legs just start jumping uncontrollably, and keep me awake. Without meds, I estimate Id get about an hour of sleep a night. Currently, Im on 2 mg Requip, 7.5 mg oxycodone, 200 mg Keppra. The oxycodone is the only one I can tell is helping now.

Ive got 3 questions:

1) An accurate diagnosis seems hard to come by. Have you ever seen this symptom profile problem before? Are my symptoms some variant of PLM?

2) I recently had a sleep study which described my PLMS index as "normal". Following up with the physician and the lab tech they both agreed there was almost 3 hours of unscoreable leg movements (because I was awake and my leg movements were usually continuous). Is there a way to have leg movements during wakefulness documented (the lab uses the American not the World Sleep Association scoring criteria)? Unfortunately, the report went to my neurologist who now believes my complaints are psycho-somatic.

3) What would you recommend for treating this situation? Are there certain meds that work best for PLMW that significantly interferes with sleep? Is it possible that some of the meds Im on are augmenting my symptoms?

Erik S.,
Denver

Medical Reply

Most sleep labs (except those run by doctors like me who are interested in PLMS and RLS) do not score PLMW. Actually, we feel that PLMW are more diagnostic for RLS than PLMS (which can occur with drugs and other disorders). Some specialists feel that PLMD may be an early form of RLS (and often the RLS develops later).

It does sound as if you have PLM. What you need to prove this is just have the sleep lab score your previous study's PLMW. That should settle the issue. The positive response to dopamine drugs also supports a diagnosis of PLM.

Although I have not seen your particular problem with PLMD, I have seen this with RLS (where medications stop working after a while). The trick to treat this is to keep rotating the medications as soon as they become ineffective. You can recycle previous medications into your rotation.


Sent: Wednesday, August 23, 2006 1:14 PM
Subject: Side effect of Mirapex?

Have any of your patients had severe bruising of the arms & hands, and tearing of the skin with the slightest bump, since starting Mirapex? I also have severe insomnia with the Mirapex which my doctor now wants to put me on sleeping pills. Mirapex holds the RLS as Sinemet stops working.

Any suggestions for me?
Maggie

Medical Reply

Bruising with Requip would be a very unusual side effect (but not impossible). I have not seen any such cases yet.

You may want to change to Requip instead of Mirapex (before starting a sleeping pill) and see if that takes care of your RLS without causing insomnia.


Sent: Thursday, August 24, 2006 11:49 AM
Subject: Cymbalta and RLS?

I needed a mild anti depressant to try to take the place of Ativan and the dr. gave me Cymbalta. Will this worsen the symptoms if I take a low dose in the morning? Several yrs. ago I took a quarter tablet of Zoloft for several months and it actually helped my legs or maybe my legs were getting better on their own.

I am afraid to try anything since I am already taking I/2 of Sinemet and 1/2 or 1 Vicodin at night. I feel guilty enough about this. Requip makes me depressed and dizzy.

Thanks once again for your help,
Elaine

Medical Reply

Cymbalta has a better chance of worsening RLS than helping it. But as you have already noted, individual response may vary considerably.


Sent: Friday, August 25, 2006 8:43 AM
Subject: Suggestions?

I have been on Requip for a couple of months. At first RLS was only causing sleeplessness at night and I was given clonazepam. That made me feel dependent so I weaned off that and started Requip. Nights became ok but days had symptoms. I started splitting doses, 0.5 around 3 pm and 1.5 around 9 pm. That worked for a while. Now sometimes symptoms will start earlier but I am able to walk them off usually unless I get overly tired or am standing or sitting too long.

My doctor hasnt wanted me to go over the 2.0 total at least until I see him again next week. I am experiencing waking up now around 3 am but am usually able to doze on and off until 6am or so. Sometimes I have RLS symptoms, sometimes not. When I take the 9pm dose I get very tired and fall asleep soon. When I first took Requip it did make me tired but I seemed to adjust to it until lately.

I have Requip in 0.5 mg, 1.0 mg and 2.0 mg. I dont know if I should try to stay with 0.5 mg once or twice daily and reduce to 1.0 mg at night along with Ambien CR or Lunesta or try Lyrica or some other pain med. I dont have pain as such just the feeling of muscle contraction or slight spasms which makes me want to stretch. My insurance is going nuts probably with the 3 doses of Requip although I dont take the 2.0 mg any more.

What would be your suggestion? My PCP is great and seems open to suggestions. I have a few trips scheduled and am really afraid if I dont get this under control soon.

Sally B.

Medical Reply

It sounds as if you are getting augmentation from the Requip (worsening RLS with symptoms occurring earlier in the day) and should go off this medication. If is possible that another dopamine agonist (Mirapex) may not cause this problem, but only trial and error will ascertain this (and I might be a little reluctant given your experience with Requip).

Stopping Requip will certainly cause a few days to weeks of worsening RLS symptoms, so painkillers should be used as necessary. You can add (or substitute) an anticonvulsant (Neurontin, Lyrica, etc.) if necessary but the painkillers are very safe, effective and cheap if used correctly.

A Reply from Sally B.


Sent: Sunday, August 27, 2006 9:59 PM
Subject: RE: Suggestions?

Thank you for your response. Are you suggesting I just use the pain killers only or add them to the Requip or reintroduce the Requip/ Mirapex later. What would you try first, Lyrica or Neurontin and at what dosage? I realize it might be trial and error but Id like your opinion. I go to the PCP on Wed. am. Today I took Requip 0.5 at 9am, 0.5 at 3pm and 1.5 at 9pm. I think my PCP will be ok with this 0.5 increase as I was in such discomfort for so long and today has been a pretty good day. Will see about tonight. Your suggestion will give us a new plan if this doesnt work.

Sally B .

Medical Reply

If you are truly having problems with augmentation, then increasing the dose of Requip will provide only temporary relief. Sooner or later you will need more Requip and symptoms will occur earlier in the day and likely will be more intense. Normally, we advise to get completely off the Requip or Mirapex. It can be re-introduced later (a few months) at a lower dose and then used in combination with other medications, but as your problem occurred at low doses, it may be best to stay completely away from this medication.

Painkillers alone would be fine. Neurontin or Lyrica alone or in combination is also fine. Lyrica may cause less sedation but we have more experience with the older Neurontin. Lyrica is often started after patients have trouble with Neurontin so head to head comparisons have not really been made.


Sent: Saturday, August 26, 2006 9:38 AM
Subject: Lamictal and other mood stabilizers

I have been working up to an appropriate dosage of Lamictal for bipolar disorder for the past several months. I am currently taking 100mg in the morning and 200mg in the evening. I have not experienced any RLS problems since I stopped taking antidepressants about 4 months ago, but my symptoms returned a week ago. I have been on this dosage of Lamictal for approximately two weeks and have experienced extreme RLS symptoms in my arms for the past 6 nights.

I started taking Cymbalta for depression one week ago, but discontinued after two days because on the second night the RLS in my arms was severe. --I thought that discontinuing the Cymbalta after the second day would alleviate my symptoms, but they have continued for four nights. Could it be the dosage of Lamictal that is exacerbating the RLS.

I also find it unusual that until now, I have only experienced it my legs, much of which I believe was caused by various antidepressants which I am no longer taking. In the early months of taking lower dosages of Lamictal I experienced no RLS symptoms and slept better than I had in years. I find it hard to believe that a slight increase in the dosage of the Lamictal (50 mg in the last two weeks) could create such a change. Clonazepam, Ambien, Lunesta, and Lorazepam have not been effective for sleep during this episode, but have been effective for episodes prior to taking the Lamictal.

Are there certain mood stabilizers that are know to exacerbate RLS symptoms?

Lillian. C.

Medical Reply

Lamictal has actually been used to treat RLS as are many of the other anticonvulsant medications (although, it is also used as a mood stabilizer...as are several of the other anticonvulsants). Therefore, your reaction which occurred with just the higher doses of Lamictal is hard to understand.

Abilify is a medication that is used for many psychiatric disorders that potentially (not really studied for this yet) may be better suited for RLS patients but we need more time to ascertain this issue.


Sent: Sunday, August 27, 2006 11:16 PM
Subject: What effects can Mirapex have on a growing fetus?

I am currently 32 weeks into my pregnancy. Everyday my RLS is getting worse and worse. My type of RLS is incredibly painful. Therefore, not only am I up all night, but I am in pain all night. My doctor will not prescribe me Mirapex. Why?

I find that this does not make sense since I have been prescribed other Category C drugs (Tylenol w/codeine and Darvocet - neither gave me any relief). What is it about Mirapex that is so scary during y pregnancy?

Shannon

Medical Reply

Category C drugs are usually avoided unless absolutely necessary as they present increased risk to your developing fetus. If no other drugs work or are available to treat your RLS, then for severe RLS even a category C drug may be considered. It is all a matter of weighing the risks and benefits of the drug compared to your medical problem.

However, there are other very effective Category B drugs. The painkillers, methadone and oxycodone can be given during pregnancy and should take care of your RLS symptoms.


Sent: Monday, August 28, 2006 7:09 PM
Subject: Paxil and Requip?

I have been on Paxil for possibly 4 years for anxiety when just recently I was diagnosed with RLS. I am 54 and active. I have always been an anxious person and therefore maybe a switch to Wellbutrin would be in order. Last night after eating a large dinner at 7:30 and snacking later on in the evening, I took a 2 mg Requip and couldn't get to sleep until past midnight.

I have read where Requip can keep you awake and people are taking sleep aids? If I decide to stop taking the Paxil how best to get off of it?

Tom M.

Medical Reply

Some RLS sufferers do get insomnia with Requip while others get sleepiness (hard to understand). Many of those who do get insomnia will use Ambien or other sleep aids. However, it is best to find a medication (perhaps Mirapex?) that may help your RLS and not affect your sleep.

You should not stop Paxil without discussing it with your doctor. This medication should be tapered off slowly to avoid causing problems.


Sent: Monday, August 28, 2006 9:02 PM
Subject: RLS relief?

I am a vegetarian and had terrible RLS as well as leg cramps that lasted all day. I did some research and found that I may be lacking iron. Three hours after taking a 27 milligram tablet my cramps disappeared and I discovered that the RLS that had plagued me nightly disappeared forever. I now usually take a half a tablet daily. If the cramps return I take another half. I always take these with a meal. I really hope this helps others as much as it has for me.

Marlice B.

Medical Reply

Iron therapy can help RLS but generally takes weeks to months before becoming effective. The iron levels have to increase enough to raise iron levels in the brain (which is a very difficult and slow process). Therefore, I have no explanation as to why the iron helped you so quickly. In addition, muscle cramps are not known to be helped by iron.

However, we will print your letter for others to read.


Sent: Tuesday, August 29, 2006 8:55 PM
Subject: RLS seems to get worse...

I am a college student and my first symptoms of restless leg started over two years after withdrawals from Percocet after double-hip surgeries. After the withdrawals the RLS went away. The symptoms came back about 9 months ago while on vacation in Florida. I came back from vacation and was having a horrible time with it. My doctors at school knew very little about the disease and were apprehensive about giving any medication it. They decided to put me on Ambien for about a month until that was doing little as my symptoms were getting worse. I was moved to Temazepam (a benzodiazepine sleep aid) and that seemed to work to help me sleep but the RLS was still bothering me during the day.

I was referred to a Neurologist and he put me on Requip and kept upping the doses as that didn't work. My primary care at school (Maine) switched me back to temazepam because I could not see the neurologist as my insurance didn't cover out of state. I later came home to see my primary care at home (Mass.) decided to try Mirapex with me and upped the doses with also no results.

A friend of mine had vicodin and Percocet which I tried and that worked perfectly and slept for a few days while I had it. I am now in the worst state ever with the RLS and sometimes on the verge of tears it is so bad. The temazepam is putting me to sleep but the RLS has gotten so bad that it is waking me up from the "coma" it used to put me in. I want to ask my doctor to prescribe me to an opiate because I know that works but I doubt she will give me anything as I am only 21 years old and in college. I

 don't know what to do and I am scared I am going to have to suffer with this.

WHAT DO I DO?
KP

Medical Reply

An alternative to the opiates are the anticonvulsants. These include Neurontin, Lyrica, Topamax, etc. and may be very effective for some RLS patients.

However, if the anticonvulsants do not help, then you will likely need painkillers. Ultram is a non-narcotic choice that works for many. If that does not work for you, then hydrocodone, oxycodone or methadone (which is one of the most effective and safe opioids) should do the trick. Despite the fact that if given appropriately, these drugs are very safe, most doctors are very reluctant to prescribe them.

A Reply from KP

Sent: Tuesday, August 29, 2006 10:04 PM
Subject: Re: RLS seems to get worse...

How do I bring up the idea of these anticonvulsants to my doctor as they all seem to be very unfamiliar with RLS. Are they addictive and will my doctor be apprehensive to prescribe?

KP

Medical Reply

The anticonvulsants are not addictive. The only barrier to prescribing them may be their inexperience with this class of drug (except for Neurontin which is also used to treat shingles). You may want to bring in some info (like from our Treatment Page or from the RLS Foundation's Website). If your doctor cannot or will not prescribe medications that can help you, then you should demand a referral to a specialist who can (usually a neurologist or sleep specialist).


Sent: Friday, September 01, 2006 5:19 AM
Subject: Night shift work and RLS?

I am a night shift worker and an RLS sufferer since childhood. I take Mirapex and have had great results with it. Until I started to work nights that is. On my first night I have to take Mirapex to get some sleep before my shift. Then, in the morning in order to get a day sleep, I have to take my Mirapex. On my last night shift I take my morning dose and then take another dose to get my night sleep.

So I am doubling up on some days and I find that my symptoms have become very bad lately and I am not sleeping. 4 hours is all I can seem to get. Is it because of the extra dose? There is no way I can get sleep if I don't have Mirapex in my system, do you have any advice for me? What sleep aids would you advise? I need more sleep!

Lynn S.

Medical Reply

Shift work and RLS usually do not mix. In fact, there are really just a minority of people who can to well with shift work (the really good sleepers without any other sleep issues).

There are some drugs that may help and that you may want to consider (assuming that you can't easily change your shift work to regular hours or get a doctor's note to get you off the shift work). Melatonin or the new drug Rozerem (that acts even better on the melatonin receptors) often works well for shift workers to induce natural sleep. If that does not work, then consider using Ambien, Sonata or Lunesta to help you get adequate sleep.

It is most likely that the shift work is causing more problems than the increase in Mirapex, although the increase in dosage may be adding fuel to the fire.


Sent: Friday, September 01, 2006 5:20 PM
Subject: Augmentation question?

I just found your site and hope that you might have some advice for me. I was diagnosed with RLS/PLMD this summer. My sleep study showed 45.2 limb movements per hour and 45.1 cortical arousals per hour. The doctor started me on Requip and I built up to taking 1mg in the evening before bed. After about three weeks I began to notice a worsening of RLS sensations while awake.

I have never had them with great frequency -- it was the tiredness and kicking in my sleep that had me pursue the sleep study. But now I am aware of my legs all day long. I don't have painful sensations, but rather a sort of tightness and a desire to flex and stretch my limbs. I went back to the doctor both because of these feelings and because my husband says my kicking persists and I am still exhausted during the day no matter how long I have "slept".

She upped my dose to 1.5 mg. I am supposed to try this for 2 weeks; if no improvement, we will have to consider another course of action. Does this seem right?  I also take 20mg of Prozac in the morning (and have done for 6 years).  I read in one the postings that perhaps splitting the dose of Requip might help with the RLS augmentation.

Jane F.H.

Medical Reply

Your problem may be augmentation from Requip but it is different than the usual type that we generally deal with. Normally, Requip is used to treat evening/bedtime RLS symptoms then when augmentation starts, the evening/bedtime symptoms begin earlier in the day. Splitting the dose makes sense for that situation as long as the RLS symptoms do not continue to occur earlier and earlier in the day.

It is not uncommon for PLMD patients with minimal or no RLS symptoms do start having new or increased RLS symptoms after starting a dopamine agonist. Whether this is true augmentation or some other worsening of the disease process is not well understood. It is quite likely that further increases in your Requip will result in further worsening of your RLS symptoms.

Treatment of PLMD is still quite controversial. Many sleep and RLS specialists do not believe that PLMD is a real disease or problem (but may rather be a manifestation of some other problem) and is not a cause of daytime fatigue, sleepiness or other problems (and treating it has not yet been demonstrated to improve daytime symptoms). The lack of research on this topic makes it very difficult to discuss (more speculation than facts).

Having discussed the above issues, it might be better to try another approach for your PLMS problem. Neurontin is a reasonable drug (as long as you don't get the next day hangover) or just take a sleeping pill (non-benzodiazepine is preferred) that may not decrease the legs kicks but should decrease the arousals from the kicks.


Sent: Saturday, September 02, 2006 9:18 AM
Subject: Problems with RLS medications?

I just wanted to add some information to your case history. I have had RLS since childhood, my dad has it, my sister has it as well. I have it worse then both of them.  The thing that has benefited me more than any other thing has been doing squats until I get a lactic acid burn. I hate doing this especially at night when I am sleepy, but its the only way Ive found that has no side effects other than anger, which subsides as soon as the squat ordeal is over.

I went to my local doc and he gave me Tylenol #3. That worked without a problem for almost 3 months, but then I started to have side effects the whole next day after taking a pill (which was every night). I basically got irritable and mildly depressed.

I went to a sleep specialist who put me on Mirapex. It killed the restless leg but made my ultra paranoid. I hung on for 2 weeks, but couldnt take it any longer. It was tooooo weird. He gave my oxazapam to go with it, but then I got side effects the next day, irritable when it wore off.

So Ive gone back to squats. Also Ive found that if I eat something small, I wont have another attack during the evening, but if I dont eat anything, I usually have at least 2 awakenings, sometimes up to 4. My eyes are baggy and it is definitely not easy to live with. Im 41 years old now.

Do you have patients like me who adapt to drug therapies rapidly? It seems like as soon as I get tolerant to a drug, I begin to experience the opposite effects the next day.

Just wondering if there is hope.

Kev

Medical Reply

Many RLS sufferers have similar reactions to what you are describing. The trick may be to use lower doses of medications and perhaps even 2 or 3 together or even alternate them.

As you had a funny reaction with Mirapex, you might want to try Requip, which is similar (and keep it at a low dose). You could add an anticonvulsant (Neurontin, Lyrica, etc.). You might also consider other pain medications such as tramadol, hydrocodone, methadone etc.

It often takes a lot of trial and error before finding the correct drugs or combinations in patients such as yourself who are very sensitive to drugs. However, with time and the proper trial of these medications, most RLS patients can attain excellent relief without having to do strenuous squats every evening.


Sent: Monday, September 04, 2006 1:21 PM
Subject: RLS better with colchicine?

I had restless leg syndrome, somewhat severe in that it was impossible to sleep and would occur 5-6 nights a week.

I also had several attacks of gout from which my Dr prescribed a 3mg/day preventative dose of colchicine. the RLS disappeared overnight. Has anyone else had this experience?

David

Medical Reply

Colchicine is not known to help RLS. Your experience seems to be quite unique.


Sent: Wednesday, September 06, 2006 12:55 AM
Subject: NerveFix for RLS?

I have e-mailed you several times and have taken numerous different medications for my severe RLS (24/7 and painful). So far the only thing that works for me is oxycodone. I was shopping in a Hi-Health store several weeks ago and found a product called NerveFix. The ingredients are as follows:

Indications: Helps relieve symptoms of numbness, tingling, burning, nerve pain and pins and needles.

Directions: Adults and children age 12 and above: Take 2 capsules twice daily until symptoms are reduced, then 1 capsule twice daily.

NerveFix Active Ingredients: Aconitum napellus - 6x, 12x, 30x: tingling, numbness, burning undulating sensation, neuralgia, restlessness, shooting pains, back numb, insensibility of hands and feet, swollen.

Belladonna - 3x, 6x, 12x, 30x: shooting pains along limbs and pain in hips and thighs, facial neuralgia.

Cantharis vesicatoria - 6x, 12x, 30x: burning soles of feet at night, soles burn, undue inflammation.

Ferrum phosphoricum - 6x, 12x: inflammations, burning sensations, sensitivity, pain in shoulder, hands swollen and painful.

Hypericum perforatum - 3x, 6x: pain in toes and fingers-especially in tips, neuritis with tingling, burning pain, traumatic neuralgia and neuritis, numbness and flossy skin, pain in nape of neck, radiating up spine and down limbs.

Kali phosphoricum - 6x, 12x: pains with depression and subsequent exhaustion, anxiety and nervous dread.

Magnesium phosphoricum - 8x, 12x: anti-spasmodic, cramping of muscles with radiating pains, neuralgic pains.

Phosphorus - 6x, 12x, 30x: burning feet, arms and hands become numb, ascending sensory and motor paralysis from ends of fingers and toes.

Spigelia anthelmia - 3x, 6x, 12x, 30x: agitation and anxiety, restless, neuralgia extending to arm or both arms, nervous system.

Other Ingredients: Alpha Lipoic Acid, Anise, Benfotiamine, Betaine HCL, Capsules (gelatin, purified water, glycerin, titanium dioxide), Chamomile, Choline (bitartrate), Deer Antler Velvet, Evening Primrose Oil, Inositol, Magnesium Stearate, Methyl Cobalamin, N-acetyl cysteine, Passion Flower, Pyridoxine HCL, Silica.

I have been taking this for about 1 1/2 weeks now and it seems to work. It has reduced my pain quite a bit and allowed me to lower the amount of oxycodone I take. I will keep it up for a month or two and report back.  I don't know if you have any opinions on the product?

Roscoe P.C.

Medical Reply

This product is unknown to me. Some of the ingredients may have some limited therapeutic effects. However, this product has much more of a chance of working through the placebo effect than from its ingredients.

A Reply from Roscoe

Sent: Wednesday, September 06, 2006 9:54 PM
Subject: Re: NerveFix for RLS?

I had myself convinced it would not work and it does versus the scripts I was given (gabapentin, Mirapex, Requip, etc) which I thought would work and didn't. I am doubtful about the placebo effect. .I mentioned it on the discussion boards so we will see if anyone else tries it and what they report.

Rosco P.C.

Medical Reply

The placebo response is quite hard to figure out. Although one would expect it to be equally present with all the other medications that you have tried, that is generally not the case. Remember, time has changed so not all the variables are the same as before. If one factor is different, that may be sufficient for you to respond this time.

However, having said that, I certainly cannot definitively say that this medication does not help your RLS. It is certainly possible. It is most likely that even if this is a very real action for you that few others will benefit from it.

A Reply from Rosco P. C.

Sent: Wednesday, September 20, 2006 7:09 PM
Subject: Re: NerveFix

Well the stuff seemed to help for a couple of weeks and now nothing. I had told you before I was averaging 10mg-15mg oxycodone daily, now I've had to increase to 15 mg-25 mg daily (at end of month 3 of continuous use). I have no dependency issues developed; no withdrawal symptoms as sometimes I will go 10-15 hours before I am able to take more because of work. My question is:

Is it common to see the dose needed to relieve the pain go up after a certain period of time? Is this dose still considered low (I am 29 years old, 5'11" and weigh 205lbs)?

I have also read that it may be better for me to take something like OxyContin 20 mg in the am and once again before bed and use the Percocet for break through pain then to continue with the Percocet by itself....any opinions?

As a heads up I will be giving my doctor your email as she may have some questions since this is fairly new to her (as long as you don't mind???). Thanks again for your time.

Medical Reply

Just like back pain, there can be fluctuations in the level of symptoms. With time (usually decades) RLS does tend to get worse. We like to keep the total daily dose of oxycodone not greater than 30 mg (if possible).

OxyContin is more useful for those that have RLS 24/7 so that they need to take pills less often. I prefer methadone as it seems to work better (for most) and is actually less habit forming.


Sent: Thursday, September 07, 2006 3:01 AM
Subject: Just want to feel better

I am a 29 year old female who was recently diagnosed with RLS. My family doctor (in a small town) gave me Mirapex to take. He started the dose out at 0.125 but I have recently gone back had the dose increased to .025 mg, 3 times a day. I also have had trouble with depression and am taking Lexapro for that.

Last week I started having body aches and pains and the chills. Generally I thought that I was coming down with a cold. I ended up in the ER and the doc was thinking that the fever chills and body aches were a reaction to the IUD birth control just recently put in. It was taken out almost a week ago. I have been on 2 different antibiotics and I am still not feeling better. It have barely slept in the last week. As I write this letter it is 4:58 am and I am still awake because I cannot get comfortable due to the aches and pains. The chills and fever have gone way and my labs came back good.

Are these aches and pains a side effect of the Mirapex? Or is the Mirapex and the antidepressants reacting to each other? I am miserable! What should I do?

Sleepless in Wisconsin
Erin P.

Medical Reply

There is no reaction between Mirapex and Lexapro. However, the Lexapro (as with all the other SSRI antidepressants) worsens RLS. Wellbutrin is a good alternative for anxiety/depression as it does not affect RLS.

As far as your other problems, they do not sound like they are due to RLS or your medications but rather that you have some other unrelated problem.


Sent: Friday, September 08, 2006 12:40 PM
Subject: Pain associated with RLS?

Ive had RLS all my life, as did my mother, who called it the hee-bee-gee-bees and at 51, it has only gotten worse with menopause. I have found a wonderful neurologist in Atlanta, who has worked tirelessly with me trying different combinations of medications until we have fine tuned what seems to be working best for me.

My legs have always ached my entire life several days a week severe pain. My doctor has finally prescribed hydrocodone for the pain. I never read much about other people having pain associated with RLS. Its not muscle pain or joint pain and will switch from one leg to the other in a matter of seconds. Ive been to doctors from the time I was a small child about this and have never had a diagnosis, so now Im just assuming its part of the RLS that Ive had all my life.

Does this sound reasonable?

Kevon O.
Atlanta, Georgia

Medical Reply

The leg pain that you are experiencing may or may not be part of your RLS. Many RLS sufferers do experience pain although the majority do not like to describe their symptoms as painful. However, if the pain is part of the RLS then it should go away with movement and only be present at rest and be associated with an urge to move the leg.

There is a subset of RLS sufferers who have a painful neuropathy (nerve problem) that typically occurs in the legs and may be painful (numbness, pins and needles are also common). The neuropathy symptoms usually do not get better with movement or worse with rest.

Additionally, you may have an condition totally unrelated to RLS, but it seems more likely that your problems may be linked.


Sent: Saturday, September 09, 2006 4:17 AM
Subject: RLS and Mirapex

I am 79 years old and have had RLS for over 10 years. Most of the time it is my left leg that is affected with a severe urge to move it. Nothing helps except to get up and walk and I spend a lot of time walking. About 5 years ago my doctor put me on Mirapex and Neurontin - 4 tablets of Mirapex (.25mg) 1 in the morning, 1 around 3:00 and 2 before bed (11:00) along with 1300 mg Neurontin.

This helped some - I could live with it - but then it started getting worse. It was bothering me a lot during the daytime and every evening. It was especially bad riding in a car or plane. Several months ago my doctor started me on Requip but this seemed to make my RLS worse so he put me back on my old medicine. Then about a month ago he wanted me to try it again but he doubled the dose (using the sample kit). I gave it a good try, staying on it for 4 days.

I went off of all the other medicine during this time and I walked for 4 days and nights. I was in misery with no sleep. So back to the old medicine but it does not help a whole lot as I am still doing a lot of walking. Do you have any suggestions or help?  I live in WV and do not know of a RLS specialists.

Betty H.

Medical Reply

It is not surprising that your change to Requip from Mirapex resulted in trouble. Mirapex is about 2-4 times more potent than Requip (on a mg to mg basis). Therefore, your dose of Requip needed to be about 2-4 times higher (that would be 16 of the smallest .25 mg tablets in the morning!). The smaller doses that you most likely were taking predictably should fail. You might try the Requip again, but work up to higher doses but it is most probable that this would not work for you (especially given the lack of success of the more potent Mirapex at very high doses).

My suggestion would be change to the painkillers (Ultram or the narcotics). They can be used alone or in combination with smaller doses or either/both Mirapex or Neurontin.

A Reply from Betty H.


Sent: Monday, September 11, 2006 1:37 PM
Subject: Ultram with Mirapex And Neurontin

How often can I take Ultram (100mg) and what dosage should the Mirapex and the Neurontin be when I'm taking the Ultram? When I took the Ultram this morning , it seemed to help until around 3:00 . But I also took a Mirapex around 11:00. How soon can I take another Ultram?

Betty H.

Medical Reply

Ultram generally lasts about 6-8 hours. You may need more or less depending upon how effective the Mirapex and Neurontin work for you. The goal is to take enough Mirapex and Neurontin so that you only need the Ultram occasionally. However, if that does not work for you (especially given your problem with the dopamine drugs), then you can use the Ultram more frequently (with lower doses of Mirapex and/or Neurontin).


Sent: Saturday, September 09, 2006 6:25 PM
Subject: RLS Question

I am a 39 yr old female. For many years had suffered the classic symptoms of RLS. Approximately 6-7 years ago, I finally had had enough: I couldn't sit in a car for very long because the discomfort would turn painful when I went for long periods without being able to get up. I had trouble resting, sleeping, and sitting; and when in situations where getting up was not an option, I had to continually bounce a leg on my toes and ball of my foot to alleviate the discomfort.

I went to my doctor then and described my classic RLS symptoms and some other aches. Mind you, I had never heard of RLS and had no idea what was wrong with me, other than thinking I might be crazy since no one around me could identify with my complaints. My doctor diagnosed me with Fibromyalgia. I took a low dose of amitriptyline at bedtime (which helped a great deal!) until my husband and I decided to start trying for our first child. I then took nothing.

My symptoms were negligible during and after my first pregnancy 5.5 years ago. Then I had twins a year ago, all the while experiencing few if any symptoms. About a year ago, we saw a TV commercial for an RLS drug. We had an aha moment! We had never heard anything about it before then: my symptoms had been so classic, I know that's what I had years before. I dismissed the thought since my symptoms had been nearly gone all this time.

Present time: I am now experiencing some problems. It started with low grade pain just below and to the right of my right knee cap. It was only bothersome at first, now it's moved to the rest of my right lower leg, and the uncontrollable uncomfortable feelings are back. For now they are manageable. My current doctor (we moved cross country during the first pregnancy), doesn't believe in Fibromyalgia, so I'm wondering if he'll even listen to me about the RLS.

Is it possible to have RLS alleviated all this time only to have it return seemingly out of the blue? The only big change in my physical routines has been working out 3x per week after recovering from caesarian surgery.

Thanks so much for your time.
Anita J.

Medical Reply

Many patients with RLS have up and down courses. It is often difficult to figure out why the RLS symptoms come and go. Surgery, trauma, etc. often will provoke or worsen RLS symptoms so perhaps your C-section somehow triggered problems. Interestingly, usually pregnancy worsens RLS but obviously your case is different.

The drug of choice is now Requip or Mirapex. Most doctors should be able to start you on one of these medications especially because Requip is FDA approved for RLS and doctors should have a starter kit in the sample closet.

If your doctor does not know how to treat RLS, simply ask for a referral to a doctor who is more knowledgeable (neurologist or sleep specialist).


Sent: Saturday, September 09, 2006 7:35 PM
Subject: Restless Leg Syndrome and Dimenhydrinate?

Its been over 15 years since I can remember sleeping , I am awake the whole night , I have tried many things and finally now I am going to insist my Doctor gives me a prescription for a sleeping pill, I have an appt 2 weeks from now , if you could suggest something I would appreciate it. I have tried Immovane but it left a terrible metal taste in my mouth for days.

In the meantime my husband told me to buy an over the counter sleep aid. noticing that they were all Gravol (dimenhydrinate) I took 50 mg. I was so sleepy and drowsy I could not believe what transpired next. I am a dialysis nurse and many of my patients tell me about restless leg syndrome and I guess unless you experience it for yourself you cannot imagine what a nightmare it is. I could not stop moving my legs all night, I was even more exhausted than usual.

Does this mean I have restless leg syndrome, or did the gravol cause a chemical reaction in my body to cause restless leg syndrome? Why do anti-emetics worsen restless leg syndrome as noted in previous letters? I usually toss and turn all night long but what happened with the gravol was constant moving of my legs every 5 seconds or so and I could not control it.

Penny H.

Medical Reply

Dimenhydrinate (Dramamine here in the USA) is an antihistamine that is used for motion sickness. We do not fully understand why these drugs worsen RLS but they are amongst the most common to do so. Your problems with this drug suggest that it is likely that you do have a mild form of RLS (that only manifests itself when provoked by a drug like dimenhydrinate). However, your usual tossing and turning may have something to do with underlying RLS/PLMS.


Sent: Sunday, September 10, 2006 11:42 AM
Subject: Mirapex and alcohol?

I have been taking Mirapex (up to .375 mg per night) for years now with good results. I have to take them 2 hours before bedtime to ensure I can quickly fall asleep. For the past couple of years, I have experienced dizziness and fainting (sometimes nausea) if I take the pills if I have been drinking alcohol. Is this a normal side effect? Even if I stop drinking several hours before taking my pills, I experience this, along with extreme sleepiness.

Also, is there any factual evidence that RLS subsides or gets worse with age? Ive suffered for at least 10-15 years now and am hoping things wont get worse.

Mike M.

Medical Reply

There is no direct interaction between alcohol and Mirapex. However, dizziness may experienced by some who take Mirapex and perhaps alcohol can exaggerate this problem. Since alcohol worsens RLS, it would be wise to decrease your alcohol consumption, especially late in the evening.

Generally, RLS get slowly worse with age.



















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