Patient letters on RLS symptoms and remedies- Page 65

 

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: Tuesday, January 17, 2006 1:48 PM
Subject: Doxepin and RLS?

I went to a new doctor today and she was concerned about my rash, as am I. She asked if I had ever tried Doxepin. She thought it would help the rash as well as replace my anti-depressant.

I looked it up on your web site and notice you don't recommend it as it may make my RLS worse. Are you still of this belief? It sounds so promising as far as my rash goes, but I sure don't wish to be awake all night with RLS either.

Your advice will be greatly appreciated as always,
Thelma B

Medical Reply

Doxepin tends to worsen RLS.  You can certainly try the drug as it is one of the best for rashes, but that is because it is quite similar to antihistamines (which worsen RLS).  It is only a mediocre antidepressant and tends to have more side effects (in general) than the newer antidepressants.

Sent: Tuesday, January 17, 2006 2:39 PM
Subject: Mirapex/Requip for RLS?

I have been taking Mirapex (.25 at 5 p.m. and 3 .25mg at bedtime). It controls the RLS, but I get very little uninterrupted sleep. By 3:30 or 4:00 a.m. I was up to stay for the day. I also had problems with daytime sleepiness---falling asleep when sitting down to read, etc. Recently, about a month ago I switched to Requip and sleep wonderfully but during the afternoon and evening have terrible RLS augmentation. I can't seem to get a schedule for when the Requip should be taken.

Currently, I am taking 3 .25 tablets around 3;30-4:00 p.m. Sometimes I will need to take one earlier or add one later if the symptoms are still there in force. Then I take 3 .25 tablets before I go to bed (9:30 or 10:00) Occasionally, one more table is needed if the symptoms reappear. Not often. During the day, I am active and alert with no sleepiness and plenty of energy. There are days though, when my legs "ache", especially my thighs. I frequently travel with my job, and I need to get things under control. I am somewhat reluctant to increase the dosage too much. I don't know how much is too much or if the RLS has been precipitated by too much Requip.

My question is "how do I develop the dosage schedule to prevent the afternoon "terrors' as I call the RLS?  It has never been this bad as it has been since stopping Mirapex and going to Requip.

Beverly G.

Medical Reply

If you are getting augmentation from Requip (which seems likely), then it is best to decrease or stop the medication. Neurontin and/or painkillers can be used instead of Requip (whichever one works best and is tolerated).

If you stop Requip for a few months, you may be able to re-introduce it again at a lower dose and use it in combination with the other drugs.


Sent: Tuesday, January 17, 2006 2:30 PM
Subject: What is the difference?

I have been on Mirapex and Sinemet for over 8 years now. My 9 brothers and sister also have RLS. What is the difference between Mirapex and Requip? I just found out about Requip and I am not clear on what the difference is. Which has less side affects?

Nancy

Medical Reply

Mirapex and Requip are both non-ergot (safer type) dopamine agonists. They are very similar in that they act on the same dopamine receptors. Requip is metabolized in the liver while Mirapex is metabolized by the kidneys (only important if you have liver or kidney problems). Requip is less potent on a mg per mg basis, onsets more quickly, but does not last as long as Mirapex.

Other than the above information, some patients like one or the other drug better (due to side effects or the way they seem to work in that individual) but many find them very similar (when adjusted for the different strengths). Their side effect profile are very similar in general but some individuals have more or less with either drug.


Sent: Sunday, January 22, 2006 3:55 AM
Subject: Fentanyl and RLS

One year ago I was put on Mirapex for my pain related RLS symptoms. It was like a miracle. Almost overnight the RLS symptoms disappeared. I did develop some insomnia problems with it but have helped those with some Klonopin with no tolerance problems yet.  My symptoms did include the crawling pain in my arms and some times my chest also. 

However, very few set backs for a year till last night.  My questions is-has anyone worsened their RLS with the stopping of fentanyl?

After being on fentanyl (19 days) for control of pain related to spinal fusion, I stopped the fentanyl one night and even though I took my regular meds (Mirapex) for RLS I had the worst ever experience with my pain related RLS. It was incredible. I had to move my legs and arms continual for any relief. the crawling pain was in my chest also. Could this severe episode of RLS been related to the stopping of fentanyl (50mcg for one day)?

Baffled Bill in Md.

Medical Reply

Your problem is most likely due to stopping the fentanyl as this narcotic (as with all other narcotics) was likely treating your RLS discomfort/pain (without you being aware of this benefit) and stopping it is now depriving you of this extra control of your RLS. Trauma to the body and especially the spine (such as your spinal fusion) often worsens RLS and the fentanyl may have been controlling this extra RLS problem. Stopping the fentanyl just brings out the additional/new problem.

Perhaps increasing your Mirapex may help the problem but you may need some type of painkiller until you get control of this issue.


Sent: Tuesday, January 24, 2006 1:17 AM
Subject: RLS and side effects with Mirapex.

I have tried Mirapex with good success in reducing my symptoms of RLS, but it has a side effect I find frustrating. For 3-4 days following using 0.125 dose of Mirapex I find erection and ejaculation during intercourse difficult. You may not want to print this question and reply off line, but it is for real.

Bill R.

Medical Reply

Your complaints of side effects with Mirapex do occur but they are fortunately quite uncommon. It may be helpful to switch to Requip (a very similar dopamine type drug) which may or may not cause the same side effect while effectively treating your RLS symptoms.


Sent: Tuesday, January 24, 2006 6:14 AM
Subject: Cold Medication with RLS

With the medication warning card, I know what not to take for a stuffy nose to not aggravate my restless legs. With that said, it leaves me with the question of what I can take. Please help me find something to clear my sinuses that won't aggravate RLS.

Sallie S.

Medical Reply

The non-sedating antihistamines tend to be fine for RLS. That includes Claritin/Alavert which are OTC and the prescription drugs Allegra and Clarinex.


Sent: Wednesday, January 25, 2006 7:08 AM
Subject: My RLS

I wrote to you a couple of years ago, and you expressed concern that my dosage of 6 mg Requip per day was hefty. Iím up to 7.5 now, but my neurologist thinks this is better than adding anything else. He is not concerned until I get up to 12 mg., which is where he says he starts Parkinsonís patients. He thinks Requip is the most benign thing I can take, and isnít concerned. (Iím assuming that claims like the one on http://www.restlesslegscure.com/ are useless.)

Judging by past history, since I started at .5 mg in 2001, it may be a few years until I get up to 12, but Iíll get there. It seems that symptom augmentation is inevitable?

Herb B.

Medical Reply

It is hard to determine from your description whether you already have augmentation. Most RLS patients need less than 4 mg per day of Requip. It is unusual to need more than 6-8 mg of Requip per day at which most (but not all) RLS patients seem to plateau on the effect of this drug (for their RLS).


Sent: Wednesday, January 25, 2006 8:29 AM
Subject: Alternatives for Requip

Since, I understand, Requip and Mirapex bind on the same cell receptors, I would assume that Mirapex is not an alternative when 1 mg. of Requip at bedtime (and earlier and earlier) has resulted in apparent augmentation. My wife's PLMS (not really RLS) has begun earlier in the day (like 3 p.m.), but is controlled by constant standing activity. However, the onset in the evening has started so early that the 1 mg. dose at 7 or 8 p.m. has little effect, and, in fact, seems to aggravate the intensity until she is able to get to sleep (from exhaustion) fairly well by 11:30 or midnight. But the jumps are now occasionally resuming by 5 or 6 a.m.

If this is, in fact, augmentation (which I understand is not supposed to be characteristic of Requip?), is Sinemet or Permax an alternative to suffice during a drug holiday (how long? what dose?) from the Requip? Klonopin has been proposed earlier by the neurologist that started her on the Requip at the 1 mg. dose; but its long half life is not appealing to one who has very active daily obligations.

She has earlier tried Neurontin by itself without any benefit. The 1 mg. dose of Requip about 9 p.m. seemed to be very effective for about three months, and during that time there was little, if any, daytime problem, even allowing for a 30 minute nap.

She will be 77 in a couple of weeks, has a pacemaker and takes Inderal and digoxin to control atrial fibrillation. We keep searching. Your recommendations will be appreciated.

Ron J.
San Marcos, TX

Medical Reply

It does sound as if she is getting augmentation from Requip. However, most of us start Requip at .25 mg and increase the dose only if necessary. Lower doses may work better and are usually less likely to cause augmentation. Often splitting the dose (taking a smaller dose at 6 pm then another 1-2 hours before bedtime) may work better.

Mirapex does act on the same dopamine receptors but may or may not cause augmentation when Requip has caused this problem. Sinemet is the most likely drug to cause augmentation and Permax is not used very much any longer (due to side effects).


Sent: Wednesday, January 25, 2006 5:16 PM
Subject: Warfarin and RLS drugs?

I am 47 year old and take 8-10 ml of warfarin each day because I have a genetic disorder that make me predispose to getting blood clots. I have had two so far. I began suffering form RLS about 2 years ago (just around the time I got my second blood clot in my leg) it keeps me awake at night is is very annoying. My doctor gave sleeping aids and muscle relaxers, neither helps much. I just learned about Requip and Mirapex, my question is can I take either of these while on Warfarin?

I have not spoken with my doctor yet, wanted to do some research. I am also a single working mom who desperately needs her sleep...

May

Medical Reply

Requip and Mirapex do not interact with warfarin (Coumadin). They can be taken together without problems.


Sent: Friday, January 27, 2006 7:46 AM
Subject: Advice please


Hi, I have had RLS since childhood. I get symptoms of pain (feels like ants crawling on my bones of my LE's) 4-5 days a week or more which prevent me from getting enough sleep and causes much frustration. My pain is so extreme when it comes on that it is worse than any other pain I have experienced. My father as well as his father had RLS. I have always had a hard time riding in vehicles or sitting for >1 hour in meetings and or classes. My parents took me in for ADD testing as a youngster which was negative, I was merely having trouble concentrating in school and sitting still, go figure. I am 31 now and diagnosed 2.5 years ago when I found out that what I was experiencing was not normal in nursing school, I am now a Bachelors prepared RN.

Anyways, my Neurologist put me on Requip which I took for 1.2 years. It worked great at first but over time the side-effects got terrible and it did not always work. My Neurologist just kept wanting to increase my dose and told me if I woke up in pain to just take some more Requip even though it never helped once I was in excruciating pain. He then switched me to Mirapex but still the pain along with nausea and extreme fatigue as side-effects.

I stopped going to that Neurologist about a year ago and tapered off of the DA's at that time. Finally my RLS returned so bad that I went into my PCP and he gave me Clonazepam which worked great for sleep (except it made me tired next day due to long half life) but did nothing for the pain. Things had gotten so bad that I could not go to events 2-3 hours away, driving late at night I would have a hard time even keeping one foot on the gas pedal and I soon quit going places and realized that RLS was seriously affecting my quality of life.

Feeling like the medical system was failing me even though I am an RN, married, and have great health insurance; I had to take matters into my own hands. Beginning in April of '05, I began to use an online physician consultation service that requires medical records and a recent physical and has a doctor call to discuss treatment options. The focus of treatment is usually opiate medications and having read the Mayo Clinic algorithm for RLS, I decided to try hydrocodone along with Xanax to get some relief. I currently take .25 to .50mg of Xanax at bedtime and I also split one 10/325 hydrocodone tablet and take half of it at the onset of symptoms which are early evening on my days off and at bedtime on work days (I work 3-11:30PM). I have been doing this for 10 months now and have not needed to escalate my dose to get relief. I am prescribed 120 tablets per month but use only 60 and am pleased to have not developed the addiction many do and that I quite frankly feared even though I have no history of substance abuse.

I am to the point now where I want to go back in to a see a Neurologist because I have health insurance and should not have to resort to the methods I am using now to get relief from my RLS. I know that I will likely be dealing with this disorder for the rest of my life. I am willing to step down to Darvocet, Ultram, or Neurontin but I also do not have the leisure to try these other drugs if they do not work, this is because I get complete, reliable symptom relief from what I am presently taking. I am going to switch to Tylenol #4 and take it as I do the hydrocodone as a half or one pill at a time.

My main questions are what will the Neurologist think of my basically self-medicating? Plus, I think I have been able to establish self-control with the opiate medications and have taken them appropriately as needed. Will this behavior be looked upon as drug-seeking or do you think an MD will actually see that I am not an addict and just want relief. Also, I do not want to be on Xanax long term but it works fast, should I consider Ativan or revert back to clonazepam or perhaps Ambien?

Scott S.

Medical Reply

The amount of narcotic that you are taking should not concern any doctor who understands the drugs and RLS but unfortunately, that at this point in time includes only a small percentage of doctors. With the low doses of narcotics that you are currently using it is virtually impossible to become dependent or tolerant to the narcotics (unless you have a previous history of drug abuse).

Ambien or Lunesta are better choices for sleep which is all that Xanax or Ativan (or even clonazepam) does for RLS. The newer sleeping pills are not habit forming compared to the older benzodiazepines.


Sent: Friday, January 27, 2006 1:37 PM
Subject: Requip and Ultram together?

I want to know if there is a danger in taking Requip and Ultram at the same time...I have taken these two together the past 2 nights and have never slept better...but is there a danger???

Mary C.

Medical Reply

We often prescribe these two drugs together. Ultram has a very low addictive potential especially when taken at the low doses used for RLS.


Sent: Friday, January 27, 2006 5:08 PM
Subject: Re: antidepressants query

You kindly replied to my queries some months ago and I've been struggling along without much improvement, using the previous medication pramipexole (Mirapex) and/or Requip for the legs and 3 mg Bromalex or sometimes 3 mg Melatonin for sleep - the Trazodone didn't work out at all. I have now been forced to increase the leg pills from 0.09 mg pramipexole to 0.18 mg + one or even two 0.25 mg Requip (I've taken the two different medicines thinking that it's less heavy on the liver or the kidneys than taking big quantities of just one medication).

It seems it's high time to change and have a drug holiday from Requip/pramipexole and I would like to try a narcotic like you suggested in your previous reply. My question is: which would you recommend and what starting dosage? Will visit my local American GP coming Tuesday and he could prescribe whatever you recommend.

Maikki S.,
Cascais, Portugal

Medical Reply

Unless you have kidney or liver problems, you should have no concern about using Requip or Mirapex and drug holidays are of no benefit. You should stick with one of them and increase the dose slowly until your symptoms are relieved.

If you do want to try another drug, Neurontin or the narcotics are good choices. Any narcotic will do (if you need a low dose). I prefer methadone as it works very well and does not contain any acetaminophen (which does not help RLS). Ultram is also a good choice and is less addictive than the narcotics (although that is not really a problem for almost all RLS patients).


Sent: Saturday, January 28, 2006 2:21 AM
Subject: Mirapex

I too have endured RLS for the past 5 yrs or so. I recently said enough was enough since I had heard good things about Mirapex. I started it and immediately felt relief. BUT the side effects are tough. I get a dull headache the whole time I am on it and am very sleepy. Of course, since it is a drug designed to muffle the nervous system, I understand why I am sleepy.

But I can't function normally. Constantly yawning, wanting to go to bed or just lie down. Energy level zero. Do the symptoms abate after awhile?

Medical Reply

They may or may not. Make sure that you are on the lowest dose that helps the RLS. Requip is an alternative that may work as well and possibly not cause the same side effects. If not, there are many other alternatives.

Sometimes the symptoms do get better with time.  Interesting enough, others experience insomnia with Mirapex.  You may consider Requip as it may not share the same sleepiness side effect.

Sent: Saturday, January 28, 2006 11:54 AM
Subject: new RLS symptoms

I've had RLS since a very young age, I'm now in my 70's and the last 9 months my legs from the knees up have a stinging burning pain that extends down to my calves . It is very debilitating for it makes me very tired and makes my legs feel weak. I'm taking Lunesta at bedtime or I wouldn't be able to sleep at all for the pain. Is this a common complaint by other RLS sufferers?

Thank you for you consideration ,
Shirley T.

Medical Reply

Your problem may be due to sciatica (more likely) or an RLS related neuropathy. The sciatic problem can be ruled in or out easily by a neurologist or orthopedist.


Sent: Sunday, January 29, 2006 1:16 AM
Subject: Bed suggestions

I have been diagnosed with RLS and sleep apnea. I wonder about the sleep apnea since I sleep great but only from 2 am to whenever I need to get up ( 6:30 am on work days and 10 or later on off days). I do experience sleepiness during the day because of my getting only 4 hours of sleep a night

I currently take 1.5 vicodin and 2 Mirapex for my RLS. I usually take them right before bed but info on your site suggest taking the Mirapex 1 to 3 hours before bed. I have tried Lunesta to help get me to sleep before 2 but it had absolutely no effect. I tried Ambien but it made me groggy and I woke up in strange places ( like the closet ). Is the Ambien CR better for this problem?

Now the question: has there been any research done regarding beds? My wife and I care contemplating the purchase of a new bed and we've been told by some the Temper-Pedic is good and by others it's not good for people with RLS ( told for one thing it's too hot ). Is there any research available about the effect of different types of beds on RLS?

Thank you for your time
John S.

Medical Reply

If you have trouble with immediate release Ambien, you will likely have the same problem with the CR version.

There is no research at all on the effects of beds on RLS. However, the Tempur-Pedic mattress (as with other good memory foam mattresses) do a good job at damping the PLMS leg jerking movements which helps the sleep of the kickers bed partner.


Sent: Saturday, January 28, 2006 9:09 PM
Subject: RE: Restless Legs Syndrome

I am undergoing a slow withdrawal from Klonopin after my original taper failed and I had to reinstate on the drug. I have developed restless legs syndrome as one of my withdrawal symptoms. The pain in my legs is often excruciating. Would a drugs such as Mirapex or Requip be useful in treating RLS resulting from Klonopin withdrawal?

Diane

Medical Reply

If your problem is RLS then Mirapex or Requip may be very helpful. Narcotics or Neurontin would also work.


Sent: Sunday, January 29, 2006 9:10 AM
Subject: Severe RLS question

I have been suffering severe RLS since my freshman year of college, which was 11 years ago. I could live though it most of the time, but for the past 4 years it has become severely worse. Itís not only in my legs but also on my arms and trunk. It starts up around 4 in the afternoon, and will drive me crazy all night and it drives my husband crazy although he has been so supportive.

I have seen my doctor and a neurologist. I was put on Mirapex, Requip, and recently Klonopin which just makes me have a drugged out feeling all day. I knee surgery about a year ago in which I was placed on Vicodin, The Vicodin gave me complete relief from the RLS.  I took one when it started bothering me and occasionally one in the middle of the night if was still bothering me.

Now that my doctor wanted me off of it he stopped completely and my RLS is back and keeping me up. I know it is addictive, but if it worked so completely why switch it, and now I am suffering and getting no sleep. The Vicodin was a godsend and the only sure way to get rid of the RLS and now nothing else works.

Any ideas, I have tried everything from over the counter to non medicinal methods and this is the only things that worked. How can I explain to my doctor that Iím not a junkie, and need it to control my RLS.

Jen

Medical Reply

You may want to change to Ultram instead of Ultracet which contains tramadol (which helps RLS) and acetaminophen (which does not help RLS so is unnecessary).


Sent: Tuesday, January 31, 2006 6:02 AM
Subject: Just Diagnosed with RLS

I was diagnosed with RLS 2 weeks ago after having this condition (The Jimmy Legs) for years. My doctor has put me on Mirapex at (2).25 mg pills before bedtime and so far so good as far as the RLS symptoms goes. I do however have other issues keeping me from getting a good nights sleep. I have chronic knee pain from years of weightlifting and kickboxing and the knee pain spreads to the entire leg (both legs) at night. My legs aren't jumping anymore but my leg pain is very uncomfortable even for a person with a high threshold for pain.

I have my 3 week checkup with my primary soon and I am wondering if I would just be better off taking a painkiller at night instead of the Mirapex. My RLS symptoms are aggravating but nothing compared to some of the folks here and my knee pain seems to be the bigger problem. Should I stay with Mirapex and ask my doc to add a nighttime dose of a painkiller or should I just push for a painkiller to be taken once at night. I have had no success with ibuprofen or naxopren or Tylenol. What kind of pain medicine would suit me best.

Thanks for all the great info you provide,
Steve

Medical Reply

Adding a small dose of a painkiller would certainly help both your RLS and arthritis pain. However, you must be very careful to keep the dose low or problems with tolerance and dependence may occur. Ultram is a good choice (and is not a narcotic) otherwise Vicodin works well.


Sent: Tuesday, January 31, 2006 9:00 PM
Subject: RLS and diabetes?

My dad has been a diabetic for approximately 20 years. He just within the last few months has been experiencing RLS. He is always on his feet and working long hours. I'm wondering what type of vitamins or natural substances he could take that would maybe help relieve these symptoms. It's now gotten to the point that he's having problems sleeping.

Could you help? Any advice,
Kelly

Medical Reply

Natural substances and vitamins really do not help RLS. He should have his serum ferritin level checked and if low (less than 35-50) then iron supplements may be helpful (but should only be taken under his doctor's supervision).


Sent: Thursday, February 02, 2006 11:18 AM
Subject: Opioid tolerance?

I have had severe RLS for over thirty years, I am now 53. After trying everything (from drugs to homeopathy to TCM), my doctor put me on oxycodone about five years ago. The doses slowly titrated to the point where I now take 120 mgs per day and, no doubt, tolerance and dependence have occurred. I don't see any way out of this. My doctor now wants to go with 12 mg hydromorph twice a day. I tried it for a day, but the evening dose didn't even come close to helping my RLS symptoms.

I'm a regular visitor to your site and I've read every letter on your site over the past 7 years. I know your usual response is to recommend methadone for difficult cases. My doctor will not prescribe this drug, and I'm not so sure I want to take it anyway. What am I to do? I'd be interested in trying OxyContin, but in my part of the world, it is difficult to obtain because of regulations established to battle addiction. I'm getting very little sleep at night (meds also include 3 mg of zopiclone and .75 mgs of Xanax) and I'm at a point of helplessness. I know my dose of oxycodone is high, but I don't know what else to do.

My doctor is very sympathetic and wants to help, but we're both at a loss - particularly with the 12 mg hydromorph not helping at night. I've been to a neurologist recently and he recommended to stay on oxy given that it's the only drug that has helped.

What do you recommend I do?

Mac

Medical Reply

If you have tried all the other drugs it is hard to know what else to recommend. Methadone is less habit forming and potent for RLS but if your doctor won't prescribe, then there is not much that I can add. Ultram (tramadol) is an alternate choice, of course.


Sent: Thursday, February 02, 2006 3:36 PM
Subject: Depression , PLMD & Chronic Back Pain

I am a 57 year old male that suffers from chronic back pain. The only relief I have ever enjoyed was from taking Effexor XR for nearly 1 year. However, either caused by the Effexor or for whatever reason I had a sleep study and was diagnosed with PLMD. I have a hard time also falling asleep and staying asleep. My internist wants to put me on Prozac which he says will help the back pain and hopefully help me sleep. I told him of my readings on this website and he should consider giving me Wellbutrin because of Prozac making PLMD worse.

I have tried .125 Mirapex and it makes my insomnia worse and also some nausea. Klonopin at .5 makes me groggy all day.

My question and my dilemma: What could you recommend that would help depression, that would help with chronic back pain and not exacerbate the PLMD?
I am so confused, and don't know what to do. Thank you so much for this valuable informative forum.

JB

Medical Reply

Changing to Wellbutrin is a good idea. It may or may not work as well as Effexor XR. All SSRI and SNRI medications cause or worsen PLMD. Trazodone is another choice but it may also not work very well for back pain.

You could also try Requip with the Effexor XR and if that does work you may need Ambien or Lunesta to help you sleep (which are much better sleeping pills than Klonopin which has a very long half-life that it gives it a very high potential of causing next day drowsiness).


Sent: Thursday, February 02, 2006 6:05 PM
Subject: Help with RLS during pregnancy?

I developed RLS during pregnancy 5 years ago, and I am now pregnant again. I sleep about 90 minutes at a time, and the only way I can get back to sleep is by doing sets of squats in the middle of the night until my legs are so fatigued, I can barely walk back to bed. Last night I did almost 400 squats over 7 or 8 sets. Unfortunately, any time I get woken up in the middle of the night, the symptoms start as well. This is a problem with my two young toddlers, last one on the way, and husband who snores mildly but enough to "wake up my legs."

Ambien isn't very effective, most other meds aren't safe in pregnancy or lactation, and I have tried every supplement and special diet possible over the past 5 years. Now I have severe hip pain and early contractions, which are directly related to how well I sleep. I plan on nursing my baby for one year. What do you suggest in pregnancy and lactation?

I am a physician and this has to be the most bothersome condition known. It is a blessing that it is benign, but I think it will drive me insane. I have been able to control the symptoms of all of my patients with RLS except myself. Help!

Alexis

Medical Reply

Right now the best drug for your RLS symptoms while pregnant is methadone. Despite the fact that this drug seems to be somewhat of an unusual recommendation for a pregnant RLS patient, it works very well, is category B and there is a lot of experience with this drug in pregnant heroin addicts (who use the drug at much higher doses). If you do not wish to use this drug, you can continue to use the non-pharmacologic methods that have only been somewhat helpful.


Sent: Saturday, February 04, 2006 7:49 AM
Subject: RLS medications and compulsive behaviors

I've had RLS forever it seems (started in my early 20's and I'm now 56) as did my father, grandmother and aunt and now my daughters. I am bothered both day and night.
I've been on almost every med I think possible, having to try new meds as the older ones stopped working or I needed major doses or combinations to keep the RLS at bay, starting with valium, Buspar, Ativan, Sinemet, Zoloft, Klonopin, Sinemet CR, Permax, others I can't even remember.

I'm now on Requip after taking Mirapex for the last 3 1/2 years and ending up with a whopping gambling problem. I thought the Requip was the answer to my prayers, as the compulsive feeling that I had seemed to ease up for about 1- 2 months or so. I've been on the Requip now almost 1 year and feel since I've been on my regular 2 mg 3 to 4 times daily. Things have gotten even worse than before.

What other options do I have as far as medications that will not add to this situation and may help me get back to my normal non compulsive self?

The RLS is not only in my legs, but my arms also. I don't sleep.  Are there others out there in this same situation and how did they make out.

Medical Reply

There are others who have complained about compulsive behavior even with the smaller doses of Requip and Mirapex used for RLS. You should report this to the FDA (you can do that through your doctor) so that this information can become part of every doctor's data base.

My advice would be to change to the painkillers (the narcotics or tramadol). If used in low dose, they can be extremely effective and safe even when used in the long term. You may eventually be able to combine lower doses of Requip or Mirapex (which should eliminate the compulsive behavior problem if the right lower dose if found) with lower doses of these painkillers.


Sent: Monday, February 06, 2006 5:14 PM
Subject: Restless Legs

I started taking Requip about two months ago and at first was a godsend but while it helps at night, my legs are worse than ever during the day. I am taking 2 mgs at night and will increase to 2.5 next week. My concern is that it is getting so much worse during the day that I'm not able to sit through a meeting or a movie. I am 66 years old and I've had restless legs for years. It mainly used to be a problem at night and now I'm miserable during the day.

You are describing augmentation which occurs in some RLS patients (the exact percentage is not yet known) after starting on dopamine drugs (such as Requip and Mirapex and even more so with Sinemet).

Connie W.

Medical Reply


It would be best to change to a painkiller (narcotic or tramadol) or Neurontin for a few months. You could then try Mirapex (in very low dose) in combination with the painkillers or Neurontin.

A Reply from Connie W.

Sent: Tuesday, February 07, 2006 4:22 PM
Subject: Re: Restless Legs

Thank you for answering my E-mail so promptly. I'm not sure what the term augmentation really means.

My legs don't cause me pain but they are so fidgety that I can't sit still. It has gotten worse during the day but does give me relief at night. My doctor seems to think that increasing gradually to 3 mgs. I'm afraid to increase as my legs are causing me so much trouble during the day.

Connie W.

Medical Reply

The painkillers are not for pain (in your case). They calm the RLS and your leg fidgets!!!! You will be amazed at how well they work. Do not increase your Requip as it will help for a short while then increase the augmentation problem.


Sent: Thursday, February 09, 2006 9:47 AM
Subject: Relief

I am very reluctant to post my discovery to eliminate my RLS of may years as I have been disappointed many times in the past, but I have been taking Solaray "CircuLegs" for over two weeks. I had little improvement the first several days and following that a few short lived episodes and to date, no symptom at all. I have been taking as directed, at first 2 tablets when I retired and after a few day, 1 tablet in the morning and 1 when I retire. I checked this product with my Nephrologists (I have diminished kidney function) and he saw no problem.

If there is a relationship between kidney function and RLS, as some researchers suggest, it will be interesting to see what my blood test looks like next month.

Side effect: I am becoming very lazy as it is so very good to lye in bed in the morning without the RLS symptoms driving me out of my bed!!!

William R. R.
Southern California

Medical Reply

The product CicuLegs is basically a Horse Chestnut formulation. We have had several RLS patient reports about improvement in RLS with this herb but there are really no studies to prove (or disprove) that this product is really effective.


Sent: Friday, February 10, 2006 11:49 AM
Subject: RLS not better with medications?

I have a very severe case of RLS that is refractory to treatment. I have tried almost every drug that has been suggested for treatment, but most of them have been destructive, with extreme adverse effects. Neurontin, Sinemet, and Requip were horrible. I cannot tolerate any type of levadopa-carbadopa-type (Parkinson's disease) medication, so I now take oxycodone (OxyContin, 20 mg and 10 mg) and clonazepam (Klonopin) every single night, but I now have to start taking them earlier than I used to and sometimes they wear off in the middle of the night and I have to get up and take a hot bath, which I really don't want to do. I used to have rare nights without symptoms, but no longer.

I also have very dry eyes and have to put eye gel in them every night.

Dee E. E.

Medical Reply

OxyContin works fairly well for RLS, but I prefer methadone. You may find that it works at lower doses and is more effective than OxyContin for RLS.

Klonopin (as with other benzodiazepines) can cause dependence and tolerance which sounds like what is happening to you. It may be wise to slowly taper off of this drug (under your doctor's supervision). You may be able to substitute a non-benzodiazepine (such as Ambien or Lunesta) to help you fall asleep (which is all that Klonopin does for RLS).


Sent: Friday, February 10, 2006 3:48 PM
Subject: Medication-induced RLS/PLMS

I have Bipolar I and have tried nearly all the anticonvulsants and neuroleptics - lithium, Lamictal, Trileptal, Topamax, Haldol, abilify, Seroquel, and Risperdal, also magnesium and Verapamil make the symptoms of RLS and PLMS worse. Clozaril was great for 6 months but it is now wreaking havoc with my blood sugar. Any advice on treatments as I will need to back to the above list and take a leg/body aggravating drug.

Alexandra H.

Medical Reply

Most every bipolar medication worsens RLS as most of them block dopamine. Abilify is a partial dopamine agonist and thus may actually help RLS (and we have gotten several reports of improvement of RLS with this drug) but it appears that this is not the case for you.

You may have to consider taking increased doses of RLS medications (the dopamine agonists) if they do not worsen your bipolar problems.


Sent: Friday, February 10, 2006 8:05 PM
Subject: Requip and birth control

Could you tell me if it is okay to take Requip and combined/hormone birth control? I am currently using NuvaRing. My Dr. recently gave me a sample (and of course I forgot to ask this question!) of Requip for my RLS. I have never taken any medications for the RLS, although I have had it since I was a teen (I'm 35 now). It's progressively gotten worse over the years and I'm ready to try something!

Mostly I have trouble sleeping (frequent night waking), periodic limb movements (while sleeping), and the aggravated early evening/late night creepy crawlies in my legs.

Stephanie J.
Goleta, CA

Medical Reply

Requip does not affect birth control pills or hormones. However, estrogen (which is part of birth control pills) does affect the metabolism of Requip. Therefore, if you go off the hormones, then you may need a different dose (higher) of Requip.


Sent: Saturday, February 11, 2006 5:32 AM
Subject: Skin problems and Requip?

I started Requip about a month ago and have been sleeping very well. I have had severe skin pain and super sensitivity ever since. I am sleeping for the first time in about 15 years but the skin problem is very bad. I was wondering how to go off of the Requip to see if that is what is causing it.

Medical Reply

You can stop the Requip slowly or cold-turkey. The only difference will be how rapidly your RLS symptoms come back.


Sent: Saturday, February 11, 2006 9:32 PM
Subject: Ultram vs. Hydrocodone?

I have severe RLS. My MD refuses to give me Methadone, as you have suggested for me in the past. I usually take three 50mg Ultram during the course of the evening and then 37.5mg Seroquel about a half hour before bed. If I get breakthrough RLS I have Vicoprofen for backup which knocks it out in about 15-20 minutes. Lately I have needed the Vicoprofen two to three times a week after I get in bed.

Due to a problem with headaches, I started taking the Vicoprofen instead of Vicodin because the ibuprofen works for me. Seems to me that it might be better to drop the Ultram and just take 7-9 Vicoprofen a week instead of 21 Ultram and 3-5 Vicoprofen. Which would you suggest?

Mahalo,
Devi

Medical Reply

There is really no right or wrong with either of your plans. Whatever works should be fine. Methadone is more effective for RLS but if your doctor does not want to prescribe it, then stick with your current medications.


Sent: Saturday, February 11, 2006 10:28 PM
Subject: Re: Mirapex woes

I'm hoping you receive this. You'd sent me the email below last December and I took a copy of it to my family physician. I waited a few weeks so that I could time my medication 'change' to a less stressful time. She has since put me on hydrocodone/apap, 5/500. It has been two weeks, I've managed to reduce my dosage of Mirapex from 1.5 mg/24 hours to .5 only at night. It has not been easy. The problem is, that I've been stuck at this dose for a week now and am not getting better. My daytime symptoms are somewhat better, but evenings are terrible.

Tonight I've had attack after attack even though I've taken 2 tabs of hydrocodone, 1 tab 25/100 carb/levo, later my usual night time .5 Mirapex and 600 mg gabapentin. It's after midnight and still no relief. This is the worst night so far (it's been 4 hours of torment.) What am I doing wrong? I can't believe I'm saying this, but could no meds at all be much worse than this? I don't know what else to try.

I'm usually a very active, very creative and productive person, but this disorder is going to destroy my life if I can't get a handle on it. I even checked with the RLS.org website for Dr's in my state that 'specialize' in treating RLS. There are none in the entire state of SD.

Brenda

Medical Reply

You may continue to have problems until you completely stop all dopamine drugs for a few weeks. That includes Mirapex and Sinemet (carbo/levo). Although two of the hydrocodone tablets are fairly potent, methadone would likely give you enough relief to accomplish that goal with much greater ease.


Sent: Sunday, February 12, 2006 3:14 PM
Subject: RLS, Mirapex or Requip

I have had RLS for about 8 years now. At the time I was diagnosed, the doctor prescribed .25 mg Mirapex along with a low dose of Klonopin, I don't remember exactly what it was, to help with a mild sleep disorder I also have. Over the years, my dosage of both the Klonopin and Mirapex has had to be increased in order for me to continue getting the same relief. I now take 1 mg Mirapex and .5 mg Klonopin every night before going to bed. Last year I was diagnosed with essential tremors and now take Primidone and Inderal for that.

I have an appointment with my neurologist next month and I have been thinking about asking him if Requip could replace the four medications I have mentioned. What do you think? I have heard of Requip replacing Mirapex and Klonopin, and I have heard that it has also been prescribed for tremors, so do you think it could replace all four medications for me? I also take medications for asthma, allergies, depression, and reflux. I am taking so many pills every day, I would be so thrilled if I could do without some of them. Thank you for your help.

TE

Medical Reply

Requip is very similar to Mirapex only less potent on a mg basis (about 1/2 to 1/4 as potent). Some patients do better on or the other drug but I am not sure that this change will make too much a difference for you and will likely not let you reduce the amount of pills that you need to take.

Klonopin is a drug that has been associated with dependence and tolerance (as with all the benzodiazepines) and has a very long half-life that may lead to daytime sleepiness, so be very careful with this drug.


Sent: Monday, February 13, 2006 12:42 PM
Subject: RLS not better with medications?

I was put on Requip starting at .25 mgs working up to 1mg 1-3 hrs before bed for severe RLS with no relief from the pain. Ultram 50mgs was added at bedtime. Still no relief. Ultram was increased to 100mgs and still no relief at night. Do you think Neurontin would work?

Medical Reply

Neurontin might work but often causes drowsiness (even the next day) at effective doses. You may need higher doses of Requip (many need 2 mg or more per dose) or a narcotic such as methadone.


Sent: Monday, February 13, 2006 1:02 PM
Subject: Permax (pergolide) and heart valve damage?

I read that Permax can cause heart valve damage. Would this be true if only taken once a month or less?

Irene

Medical Reply

Usually this is associated with long term (months and usually years) of therapy.


Sent: Tuesday, February 14, 2006 8:03 AM
Subject: CAUSES OF RLS?

I have been dealing with RLS for 5 years now and I am just now seeking help for it. (As I thought I was going crazy...) I was wondering if anyone thinks that RLS can be stress related? I was separated from my husband for 9 months and during the 9 months did not suffer from RLS. Since getting back with my husband I have noticed that RLS has worsened.

I'm not into the whole medication taking I'm scared that pills will cause other health problems. Can anyone please help?

Medical Reply

Stress worsens all medical problems. For example, back pain is usually worse with stress and RLS is no different.


Sent: Tuesday, February 14, 2006 10:25 PM
Subject: Splitting Requip pills?

My husband is taking 3mg. Requip. He has a lot of the 2mg tablets left.

Can they be split in half to make the 3mg? Thanks for any help you can give us.

J. L.

Medical Reply

The pills can be split but the dose may vary somewhat. Usually this is not clinically significant but you should be aware of the minor dose discrepancies.


Sent: Thursday, February 16, 2006 7:24 AM
Subject: RLS?

My husband of 24 years has, for the past year or two, the symptoms of Restless Limb Syndrome, we think anyway. He never has a problem falling asleep at night. Once he has fallen asleep, his legs and arms will twitch, every 30 to 40 seconds for long periods of time. He has no idea that he's twitching and his arms and legs don't bother him during his waking hours - which are side affects of RLS I've read.

Me, his wife, is the one suffering, as I'm a light sleeper and the constant movement of the bed from his limbs jerking repeatedly throughout the night is robbing me of a good nights sleep. He went to our family doctor, but the doctor said it was normal for limbs to twitch during the night. Since my husband doesn't have any of the symptoms of RLS during his waking hours - could it be something else?

He's not really too concerned about this as he's sleeping just fine. I have noticed though that lately he's seemed extra tired during the day, on weekends for example, and will take a lot of naps. Thank you in advance for any advice.

Sincerely,
Diane M.

Medical Reply

Your husband does not have RLS. He has PLMS (Periodic Limb Movements in Sleep). Although 85% of RLS patients also have PLMS, many PLMS patients have this problem by itself or associated with other problems (sleep apnea, narcolepsy or even drugs like the SSRI antidepressants).

PLMS respond to the same drugs as does RLS, but we do not like to treat these patients unless it affects their sleep (which can be determined by a sleep study). Your solution is to get twin beds (and they may need to be separated by 1/2 inch at sleep time) or get a TempurPedic mattress which markedly dampens the leg kicks.


Sent: Thursday, February 16, 2006 6:37 PM
Subject: RLS and pregnancy?

I am 28 and 6 months pregnant. I have had RLS since I was a child. Doctors unfortunately never knew what was wrong with me, so it wasn't until about 5 years ago I came across RLS on the internet myself and finally was able to self diagnose my issue.

I have never taken anything for this. There are times that it has kept me awake entire nights, however for the most part it usually takes me an extra hour or two to fall asleep, depending on it's severity that night, and that is the worse I deal with. While pregnant though, it has become horrible. But, I'm nervous to take anything even if my doctor prescribes it...is there anything natural that actually works for this? It is making me and my boyfriend very miserable lately. We can't even share a bed anymore, as I am too restless.

I have a 9 year old daughter as well, and I remember while pregnant with her it got so bad I literally just wanted to chop my legs off at the calves. I would sometimes punch myself in the ankle just to cover up the awful sensation that crept within so fiercely.

Another thing that concerns me is that my relief comes in the form of cracking the joints in my ankles and feet. This has been my bodies natural reaction to these annoying sensations since I was a kid. But after years of this, I can't even walk down steps without everyone hearing my ankles crack! And my wrists and finger joints have shown some of the same sensations over the years...though not to the extent of my legs. Is this going to cause permanent damage? I cannot stop cracking my joints...it is my only relief and an instant physical reaction I have. And it only relieves it for a second...so my poor boyfriend gets to be tortured by my movements and the sound of my joints cracking constantly. Do you think this will eventually lead me to arthritis?

Thank you for any advice you have to offer.
Christina

Medical Reply

Unfortunately, there are no natural treatments that will help your RLS during pregnancy. The best choice of medication includes the narcotic pain medications (my best choice is methadone in low dose) which should markedly help your problem.

Whether cracking your joints leads to arthritis is not well known but most believe that it does not lead to trouble.


Sent: Friday, February 17, 2006 6:18 AM
Subject: Clonazepam?

Thanks for your fast answers in the past. I'm 28 and I have moderate case of RLS and PLMD. I'm sorry but my English isn't very good. I have had troubles taking Mirapex, Requip, Neurontin, Lyrica, Sinemet. Only Rivotril worked for me, but It worked for two weeks and It didn't work more.

1. Should I take Rivotril for two weeks and then take drug holidays for few days or is better to try other medicines (opiates/narcotics)?

2. What do you advise to me?

Josť M.

Medical Reply

Rivotril (clonazepam, called Klonopin here in the USA) is not one of my favorite drugs for RLS or sleep. The narcotics or tramadol are more effective and probably safer in the long run.


Sent: Tuesday, February 21, 2006 12:24 AM
Subject: RLS and Lyrica

I have heard about a new drug called Lyrica that could possibly be used for RLS. If so, what would the dosage be? I have been taking Neurontin, 2000 mg to 2300 mg, and going up slowly as it takes more and more to work. I take the majority of it at night.

Irene O.

Medical Reply

Lyrica is quite similar to Neurontin. Some patients tolerate it better than Neurontin (although this varies). It is too early to decide whether it works better than Neurontin. The dose is up to 50-100 mg three times per day or 75-100 twice daily. Some may need higher doses but side effects then become more likely.


Sent: Tuesday, February 21, 2006 4:42 PM
Subject: RLS gets better with tennis balls.

I have found that I can get temporary relief if I lay on tennis balls. I have three tennis balls in a sock that I put beneath my sacrum. It seems to put enough pressure in the right spot to scratch that RLS itch, which I've figured out starts deep at the base of my spine. I realize this may not be great for the back if you sleep this way all night, but when things are unbearable, it can give you some relief -- and it's cheap and doesn't involve the use of medication. You can always substitute the tennis balls for foam golf balls.

My RLS can also be helped with a really, really deep knuckle massage of the variety that only a good friend will do for you. Unfortunately, you need a mate who is willing to put in this kind of effort, and most of them aren't awake at 3 a.m.

Medical Reply

You may still want to consider medication for those nights/days when your RLS does not respond to non-drug measures. There are many drugs that can make you feel much better when needed.


Sent: Wednesday, February 22, 2006 10:52 PM
Subject: RLS only in one leg?

In 2005, I had both knees replaced. After rehab for several weeks, I came home and once off of all of the pain meds rls kicked in. However, it only affects the left leg. No matter if I do exercising at the gym or have an off day, it still kicks in. The leg in question had a nerve block at the time of the operation while the other leg did not and I wonder if this could be some sort of nerve damage causing it.

My iron was low (17) at the time that I came home and since that time I have been taking iron tablets twice a day and the level has increased to 33-40. But why only the one leg?

I take Mirapex and Requip now, but wonder about taking Ultram or other pain meds with these. I would think that once the iron is high enough, RLS would stop, but does it? 

Robert W.

Medical Reply

It is not understood why some patients have RLS in one leg only. The RLS symptoms may even change from one leg to another. Therefore, we cannot explain why you have only one leg involved.

Generally, most patients take Mirapex or Requip, not both together as they work on the same receptors. Ultram would be a very reasonable addition to either Mirapex or Requip, if they do not control all the RLS symptoms.

Getting iron levels higher often helps, but unfortunately, even with higher iron levels in the blood, that does not ensure that you get enough of the iron into your brain where it is needed to help your RLS problems.


Sent: Thursday, February 23, 2006 12:14 AM
Subject: Restless legs syndrome

I have developed augmentation with Sinemet although my doctor said at 25/100 one time a day probably would not happen. It was taking the place of temazepam but now is not working as well. I used to take just half the tablet but now require more. Requip works but knocks me out for the next day. I wish I had just settled for what I had if I had known it would become worse with medicine.

My question is how do I stop the medication without literally jumping all night and getting no sleep?  Is there a substitute that would allow some sleep?  Vicodin works but of course would encounter similar problems. I know there is no magic pill but I really don't know what to do.

Linda B.

Medical Reply

For those who have problems with the dopamine drugs, Neurontin (or other anti-convulsants) or painkillers (Ultram, Vicodin or others) should be considered. The painkillers tend to be more effective with less side effects and are quite safe for the long term (especially at the low doses needed by most RLS sufferers).

You might still want to try Mirapex to see if it works better than Requip.


Sent: Thursday, February 23, 2006 9:00 AM
Subject: Decongestants and RLS

I suffer with sinus headaches from time to time and they don't seem to respond to antihistamines -- I used to take Claritin on a daily basis but still got the headaches and a decongestant seemed to be the only thing that helped. My allergies and headaches seem to be less of a problem since I stopped taking the Claritin.

Now when I get the headaches and take meds for them I can get terrible bouts of RLS. Have decongestants been shown to cause problems with RLS? If so, are there options that do not cause problems?

Janet in ID

Medical Reply

Decongestants usually do not cause increased RLS symptoms. The older sedating antihistamines do worsen RLS but that generally does not include Claritin. However, some RLS patients are worsened by the newer non-sedating antihistamines (which supposedly do not cross into the brain), so it is possible that Claritin may be the source of your problems.


Sent: Thursday, February 23, 2006 6:35 PM
Subject: RLS during the day?

I have great pain in my legs during the day like at night with the RLS. Is this possible? I take Requip at night. How long does it remain in your system?

Merry P.

Medical Reply

RLS can occur during the day, even starting in the morning in severe cases. Requip usually lasts about 6-10 hours after taken, but this can vary quite a bit in different people.


Sent: Friday, February 24, 2006 7:04 AM
Subject: RLS: Withdrawal from Klonopin - Question on Requip

I was diagnosed with RLS back in the 90's by a Neurologist. I had had RLS for many years without realizing it until I was diagnosed. The Neurologist prescribed 1/2 mg of Klonopin (clonazepam ) and a couple years later it was (at my request ) increased to 1.0 mg. Years later, realizing its addictive qualities, I tried to withdraw cold turkey... but the withdrawal symptoms were so severe and traumatic that I went back on until I could get my upcoming leg aneurysm surgery behind me. After I recovered from the surgery I wrote to my Neurologist to request withdrawal assistance. (Four months previous this neurologist had discharged me to the care of my family doctor.) For reasons unbeknownst to me, the neurologist never answered my letter requesting assistance in withdrawing from Klonopin.

My family doctor was clueless as to the uses of Klonopin or its withdrawal symptoms so he was useless in helping me. I decided to withdraw myself, this time by degrees. I went through a weekly phase-down from 1 mg to 1/2 a mg to 1/4 mg and then to zero. My last 1/4 mg was taken in mid-January 2006. I have not had a decent nights sleep since then . The other medications I take are all heart related or blood related, such as Lipitor, Altace, Plavix and Pletal.

Five or six weeks after my letter to the Neurologist he finally replied to my letter. His letter mentioned NOTHING about my request, referred me to my family doctor for help and sent along copies of my file telling me he was discontinuing our patient-doctor relationship. I had no choice but to go it alone in withdrawing from Klonopin.

Currently I seem unable to go to sleep or, if I do go under for a short time, I wake up again and it is like that usually all night long... a fitful sleep episode... resulting in grogginess and a zombie-like feeling the next day. When nighttime comes I begin to feel anxious about going to sleep. Pills prescribed by doctors had no effect. (hydroxyzine usually ) I seem to find no relief. I have a prescription for Ambien but have not yet used any for fear of resulting in yet another drug addiction.

My RLS does not help in my attempts to get to sleep. Currently I am not on any kind of medicine for the RLS.

Richard H.

Medical Reply

Ambien is a very safe sleeping pill. Only rare cases of dependence or tolerance have been reported with this drug. You should avoid drugs like hydroxyzine (Atarax) which in an antihistamine with sedating side effects (and used frequently by family doctors for sleep) that most often worsens RLS.

If you are not taking Klonopin any longer, is it your RLS symptoms that are keeping you up at night? Instead of taking a sleeping pill to help you get to sleep (if it is only the RLS symptoms that are preventing your sleep), it might be better to take a dopamine agonist such as Requip or Mirapex that directly helps the RLS symptoms.

A Reply from Richard H.

Sent: Saturday, February 25, 2006 9:25 AM
Subject: Re: Withdrawal from Klonopin - Question on Requip

You asked: "If you are not taking Klonopin any longer, is it your RLS symptoms that are keeping you up at night?"

Answer: Yes and no... Although I have the RLS usually in the evening, and sometimes when I go to bed, the. spasms USUALLY are not severe enough to keep me awake... ( that is WHEN I can get to sleep to begin with. )

Last night was a little better than usual in getting to sleep and it was SUCH a welcome and refreshing relief from so many fragmented, fitful nights of tossing and turning most of those nights. Sometimes I manage to get below Stage 1 and into Stage 2, but... if my wife should cough or clear her throat while I am submerging into State 1, I snap almost violently awake and then I begin to get anxious, waiting for her to cough again... the poor lady cannot help it.... but it is then that I seem to LOSE my sleepiness and I have a hard time getting my eyelids to stay closed. I have tried sleeping in the guest room, but I hate to give in to it... I used to enjoy watching a little TV in our bedroom before drifting off to sleep, but now I may have to form new habits. Last night I stayed up while she went to bed and read for a little while. When I saw her light out and it was pretty certain she was asleep, I went in and went to bed in the dark... then I was able to drift into Sleep Stage 1 fairly easy and then finally into Stage 2.

I am not currently taking sleeping pills, although I keep them at my bedside. I do not want to submerge myself into another addiction like when I was taking Klonopin so I am trying to "bite the bullet" and go without... Perhaps, in time, if I keep focused, I will eventually get over the Klonopin withdrawal and resume natural sleep cycles. ( Fingers crossed here )

When I am able to get in and see a doctor, I will request Requip and see how comfortable she feels with it. I would like to try Rozerem because I heard it is not a controlled substance and is not addictive. ( ??? ) but who's to know? Other doctors told me they would not prescribe Rozerem because it has not been ON THE MARKET long enough and they do not feel comfortable with it. Are you familiar with Rozerem? It was approved in July 2005 by the FDA.

Richard H.

Medical Reply

Rozerem (ramelteon) acts upon the melatonin receptors and is a very safe medication (and has absolutely no addictive potential). However, it ha only a fairly modest effect on initiating sleep (it works better for jet lag and shift workers) on most insomnia patients and does not help maintain sleep.

Ambien and Lunesta are very safe for long term use and if you still need a sleeping aid after resolving your RLS complaints (with Requip?), then they would be very reasonable choices.


Sent: Saturday, February 25, 2006 12:26 PM
Subject: Elavil and RLS?

Does low dose Elavil 25mg make restless legs worse?

Joan R.

Medical Reply

Elavil and most other antidepressant medications usually make RLS worse.


Sent: Monday, February 27, 2006 6:36 AM
Subject: Question about Requip not helping RLS?

I deeply appreciate what you are doing to assist those of us who suffer from RLS and PLMD.

I am a 72 year old male. After a sleep test about 3 years ago, the sleep specialist, a psychologist, determined that I was suffering from sleep apnea -- excessive snoring, holding breath, and PLMD. I also was having some trouble with RLS. He and his MD associate prescribed a CPAP machine and Mirapex. Over time, I worked up to 1/2 mg of the Mirapex, which seemed to control the RLS, but I was having problems with daytime sleepiness.

The Psychologist said I should work up to 1mg Mirapex or more because 1/2 was not enough to control the PLMD. I got to 1mg, and the daytime sleepiness became severe.

My primary care physician prescribed Requip, and I found, at first, that 1mg controlled the RLS for about 12 hours. It seems to be more like 10 hours after about 4 months experience. I feel some discomfort in the chest and drowsiness for a time after taking the Requip, but it is short-lived and doesn't seem serious. I note that the RLS is more severe than ever when it does break through.

The PCP also prescribed Citalopram HBR, 20 mg to enhance energy. For BPH, I take Proscar, Flomax and Detrol LA, and I take Lipitor for cholesterol.

Do any of the drugs exacerbate RLS? Also, do any of them cause ED?

Thanks,
Floyd

Medical Reply

It may be that you are getting some augmentation from Requip (worsening of RLS after starting the drug). If this is mild, it will respond to higher doses of the drug (I would not worry until you get to over 2 mg of Requip). Some patients do get sleepiness as a side effect of Mirapex (which may be why the sleepiness increased with higher doses of Mirapex).

Citalopram (Celexa) tends to worsen RLS and ED. Wellbutrin is a better choice.


Sent: Tuesday, February 28, 2006 2:51 PM
Subject: RLS Question

I have been diagnosed with RLS--some years now.

My symptoms have been the need to move my legs when lying down and leg "fanning." My doctor put me on Clonazepam and Mirapex. I couldn't afford the Mirapex so I took just the Clonazepam. I managed to deal with the symptoms.

Then Oct 31, 2005 I had a total right knee replacement. About three weeks out, I started getting what I describe as "hard flinches" in my operated knee. These have continued since that time. They are very unnerving and uncomfortable, far more so than the original leg discomfort. It feels as though the "flinching" is in the calf muscle just below the right side of the right knee. I have had them so severe that they cause extreme pain in my operated knee and cause it to swell on occasion. The quad muscles above the right knee have also had this type of flinching, but it is mostly in the upper calf on the right side just below the knee.

Before my knee surgery I told my operating surgeon about the long-time RLS. He said he didn't know much about it. Now my primary care physician is trying to help me figure out what is going on. He has had me on two separate trials of Requip (begins with 0.25 mg for two days, then up to 0.5 for five days, then up to 1.0 mg for seven days (two week course). I am now doing this same routine for a full month.  He also put me on 325 mg of quinine once a day.  I still take the Clonazepam.

So far this might be helping if I lie on the couch in evenings before bed. But the flinching (very severe) starts up again during the night or early morning. It seems if I am sleeping, then move around, it will grab me 4-5 times in a row. By then I am very much awake.  With the expense of Requip (now my trial course is free from the doctor), I don't want to purchase it if it isn't going to do the job.

I have another left knee total replacement due but not scheduled. I really want to figure out why the right knee is doing what it does. Is it the result of the surgery or is it RLS misbehaving to an extreme degree, and if so, why in just the operated knee?

Can anyone give me some ideas?

Also, can anyone suggest other meds/combos that might work to control this "hard flinching." Can't think of a better way to describe it except maybe "hell."

Susan D.
Rogue River, OR

Medical Reply

I do not fully understand your "flinching" problem. Your description may be compatible with worsening RLS (which can occur after any trauma to the body including surgery) or something else. If Requip makes it better, then it more likely than not is due to RLS. There is probably a reasonable chance that this may occur in your other leg after knee surgery.

If the Requip is helping, I would stick with it. Other options are to add a small dose of a painkiller on a regular basis.

Be careful with the clonazepam as tolerance/dependence occur in many patients (and may take years to develop).

Quinine likely has no benefit for your problem.

 

A Reply from Susan D.

Sent: Thursday, March 02, 2006 9:30 PM
Subject: Re: RLS Question


The flinching is a description someone else gave what goes on. It is always when I am at rest off my feet. It is in only the operated leg, it is a really hard jerk of the leg and you can feel it if you put your hand on the calf. Sort of like being hit by an electrical jolt. Hard to describe. I don't know if the Requip is working. Sounds strange, but I took a two week sample packet (graduated amount up to 1.0 mg), then took a couple weeks' off, then another two week sample pack, then a few weeks off, now I am at the end of yet another two week course with another two weeks straight after that. I still have the problem, maybe not as severe.

I agree about the clonazepam, my doctor and I have talked about it and he doesn't seem to think I need to get off it.

Would taking Mirapex be a good thing to try again? It has been several years since I used it. Didn't have this flinching problem then, just uncomfortable leg movements typical of RLS. I think you are right, that what has happened is worsening RLS after the surgery. I haven't had much the past two nights except for one really BIG single episode early this a.m. and instead of lying there waiting for me, I swung off the bed and stood up. BTW, I can feel them coming on just a second before they do. That is hard to explain, too, it is sort of a energy in my leg, then the big wham! So uncomfortable as it tightens the muscles (not like a spasm, however--I have had those in my legs--Charlie horses).

Susan D.

Medical Reply

If your leg actually moves (kicks), you may have the PLM's that are usually associated with RLS. These do respond to Requip. Mirapex works well in many RLS patients and if higher doses of Requip are not helpful, then changing to Mirapex (it is more potent) may be reasonable.


Sent: Tuesday, February 28, 2006 3:01 PM
Subject: Requip made me miserable

I am not quite a newbie, I posted years ago when I first started taking action against my RLS. But I had been doing well, so I stopped posting and only read occasionally. I have been suffering from RLS for 35 years- since I was 9 years old. When it moved into my back and arms (about 5 years ago) I sought treatment. I tried Permax and Requip to no avail.

Finally I was able to get some relief with Klonopin. I have succeeded in not increasing dosage, by taking drug holidays. I take 1mg each evening. Anyway, at my last doctor's appointment, I decided to follow the bandwagon and try Requip again. I took 3 days off of Klonopin before I started it. The RLS was okay during the days off. Very mild. Anyway, I just had the worst 4 nights of my life on Requip. The drug had the opposite affect on me. The RLS was so extreme that it brought me to tears. I paced my living room for hours.

Has anyone reported adverse affects from Requip? I have tried searching the archives to no avail. I have read that it didn't work for people, but I actually had the RLS go out of control. I have been two nights off of Requip, and it is much better. Any feedback is appreciated before I report back to neuro.

Karen

Medical Reply

It could be that the Requip is causing a negative effect on your RLS, although this occurs quite uncommonly. The Klonopin takes several days to truly wear off, and part of your problem may be Klonopin withdrawal (which can often be delayed by a few days due to its long half-life). You may also need a higher dose of Requip (titrated up slowly, of course) before it starts to help your RLS.

Mirapex would be another choice before you completely give up on dopamine agonists. While titrating up the dose of your dopamine agonist, you may want to continue Klonopin (while slowly tapering it off) or add a painkiller on a temporary basis.


Sent: Wednesday, March 01, 2006 12:01 PM
Subject: need an opinion about back and shoulder?

I am a 40 year old woman.   I was never a great sleeper, but last night I fell asleep ok and 4 hours later I woke up with the same symptoms I am reading about RLS, but mine was in my back and shoulders.  I ďhadĒ to move to get relief and it was very short reliefÖÖas soon as I would try and settle in, it would happen again.  It was like my muscles did not want to rest, it kind of freaked me out. 

My question is can RLS go into your back or is there another name for what I experienced?
 
The last meds I took for that were 24 hours before this episode, so I thought maybe that was still in my system or something.  I am guessing about all of this , but I sure wouldnít want it to happen all the time.
 
 Lou Ann,
 Pittsburgh

Medical Reply

RLS can occur in other body parts (the arms are the next most common sites) but they almost always start in the legs then progress (the leg symptoms do not go away) to the other body parts. It makes your diagnosis of RLS somewhat more suspect, but anything is possible.


Sent: Thursday, March 02, 2006 6:06 AM
Subject: RLS & acute panic attacks

I have had RLS for 15 years and self diagnosed for 5 years, thanks to Dr. Tim Johnson, on Good Morning America. I went to my physician with the symptoms after years of complaining of all of these symptoms related to RLS, they agreed I must have RLS. I went on to a specialist and now take .50 mg of Mirapex. I too first tried using 0.125 mg and had to increase up to .50 mg. I have also suffer from Acute Anxiety Attacks starting within the last 5 years. I have been managing it with Xanax. But now I seem to be having more frequent anxiety spells, with increasing intensity. My Doctor put me on Paxil to help even out the anxiety attacks. All they seemed to do was make my sleeplessness worse and have increased my panic attack to an acute level. I am lost as to what to do...These episodes are increasing. I am 44 with family history of panic attacks. Could Paxil actually be making these panic attacks worse? Could Mirapex and Paxil not be compatible? Could hormones play a part in this equation? Any suggestion as to a link to web site that might answer some of these questions, so I can take this back to my Dr. for help.

Sincerely in need of help,
Lindam

Medical Reply

There is no interaction between Mirapex and Paxil. The Paxil should be helping your panic attacks but sometimes these psychiatric drugs have strange effects in some individuals. Hormones can worsen RLS and definitely play a role in depression/anxiety in many women. Often it takes a lot of trial and error to find the correct anxiety/depression drug.

Wellbutrin is one of the only anxiety/antidepressant drugs that is very RLS friendly. However, it may or may not be right for you otherwise.


Sent: Thursday, March 02, 2006 2:21 AM
Subject: Re: Kidney Disease

We very much appreciated your last response to my husband's restless legs. I wonder if you would be so kind as to assist us again.

He did go on Requip as you suggested a few months ago. He was taking .25 mg twice a day. He did start to feel some relief on it. He was taking it for about 3 weeks, then ran out and didn't renew it for another three weeks because it was not covered by our medical plan.

3 weeks ago today, he started taking it again. So far his symptoms only seem to be worsening and has been awake most nights wandering the halls. It has also started affecting him almost 24 hours a day. He got fed up and finally called his renal doctor and demanded a much stronger sleeping pill than what he has been taking, Oxamapam. Even after taking 2 Oxamapam at 9 pm he still managed to be awake all night. He just received a prescription for Clonazepam (he has taken this off and on) and Zopiclone for sleep, 7.5 mg at bedtime. He has been taking this and 2 Clonazepam at bedtime, and still has not been able to sleep (has only been 2 nights).

The one day this week he felt 100% was when he got over 10hrs sleep. It's a catch 22 as his RLS barely allow him to sleep. I'm sure this is very common. He thinks if he can get a deeper sleep the RLS will decrease, therefore he has asked me if I could ask what you think. Is he on the right track? Will the Requip no longer be effective as he stopped taking it previously?

Thanks for taking the time to read this.

Sharla and Derek

Medical Reply

Taking the Requip and stopping it should have no effect on the future use or effect of the drug on RLS. It may be that his RLS is much worse and the low doses of Requip are just not adequate to take care of his increased symptoms. He may need to titrate up to a much higher dose (1-2 mg up to 3 times per day).

Falling asleep does help RLS just as it would help back pain. If you are not conscious, you cannot suffer from painful or discomforting symptoms. That is why the sedatives that he is taking are sometimes helpful.

While he is waiting to find the correct dose of Requip, painkillers (such as the narcotics) may be extremely helpful to calm his RLS symptoms. If taken in low dose they are very effective and safe.


Sent: Saturday, March 04, 2006 6:51 AM
Subject: Ambien and tolerance?

I took Ambien nightly for my restless legs for a year and it worked and helped my RLS.  after a year it stopped working went off it foe 3 weeks, and now its working again. Is this the way to counteract tolerance?

Joan R.

Medical Reply

Tolerance does not usually develop to Ambien so it is hard to explain what is happening. If your benzodiazepine (type A receptor for Ambien) was developing tolerance then it is possible that going off the drug for a few weeks may reset the receptor and make it responsive again.


Sent: Saturday, March 04, 2006 7:31 AM
Subject: Gambling and RLS

I was reading through your old posts, and saw a statement that you were aware of no cases of compulsive gambling in RLS sufferers. Perhaps you are now aware of them, but in case you are not, I am one of them. I have suffered from RLS for years, was diagnosed in 1996 and put on Permax, .05 mg. By 2001 my dose was at 2.0, mg and following a one time visit to Las Vegas with my sister, I came home and could not get gambling out of my brain.

That was the start of an almost 4 year gambling addiction, which cost me not only hundreds of thousands of dollars, but also caused tremendous pain to my husband, marriage and family because of my lies and deceit. This behavior was so unlike me and so incredibly painful to live with, and out of my power to control (despite GA, therapy, "will power") I finally decided suicide was the only way out. Fortunately, I learned about the drug connection, (after 9 days in the psych ward, after my abandoned suicide plan)...and when I was finally able to get off the drug, the gambling demon was gone from my brain. It is like the Mayo clinic patient described...like a light switch going off. It has been a year since then, and even though I have returned to the .05 dose (reluctantly, believe me) in order to get some relief from RLS symptoms, I have had not a twinge of a desire to gamble.

I have communicated with many people around the country to whom this has happened. All tragic stories; all so avoidable. The majority are PD sufferers, but there are also people with RLS this has happened to, on Mirapex, Requip and Permax. The makers of Mirapex and Requip have now put disclosures on their meds (not just re gambling, but other compulsive behaviors, eating, shopping, sex) but Permax has not done so yet. These are wonderful drugs...for the PD and RLS symptoms, and I'm sure the majority of people who take them will not experience these side effects. But for those who do experience these tremendously devastating side effects, it can truly save your life to know about the drug connection. Although the word is getting out about this connection, many doctors are uninformed and therefore skeptical (in a way, you can't blame them. It sounds a bit like science fiction). But don't try to stop these drugs on your own, and definitely not cold turkey. Find a doctor who believes you and work with him or her.

If anyone wants to communicate with me directly, you can write me at barbara@mail2mom.com.

Barbara

Medical Reply

Recently, we have gotten some reports of RLS patients on dopamine agonists who have had gambling problems (see above, February 4, 2006). As with the PD (Parkinson's Disease) patients, we feel that this compulsive behavior problem may be somewhat related to dosage in that it seems to occur at higher doses and abates at lower doses.

You should report your case to the FDA (through your doctor who should know how to do this). Permax is not used that much these days for RLS as it causes lung and heart scarring problems. If you stay on this drug, you should have a yearly echocardiogram to check your heart valves for damage.


Sent: Saturday, March 04, 2006 11:41 AM
Subject: RLS and chemotherapy

I have had restless leg syndrome and Periodic Limb movement all my life and been on medication for approximately 12 years. I control my RLS and PLM with Carbilev every 4 hours only at night and 10 mg Valium as I go to bed.

I have recently been diagnosed with Multiple Myeloma and will have to have chemotherapy.

I urgently need to know what medication can be given to me for related problems that will not react with my RLS and to which medications I would react badly.

Kathleen S.

Medical Reply

Carbilev (carbidopa/levodopa, same as Sinemet) is not a good drug to use on a regular basis for RLS as it causes augmentation (see our website for more information on this problem) in 85% or more of RLS patients who use 2 or more of the 25/100 mg tablets per day. Changing to Mirapex or Requip works much better (relatively low chances of getting augmentation) and you will likely only need one dose in the evening to take care of you for the entire night.

Be careful with Valium, as it is an addictive medication and tolerance may occur. The non-benzodiazepine sleeping pills (see our Treatment Page for more information) are much safer for long term use.

To see what drugs you should avoid, download our RLS medical alert card (available on our homepage) and give a copy to your doctors. They include most all the drugs to avoid. Additionally, you can print out the section on drugs to avoid on our RLS Treatment Page.


Sent: Saturday, March 04, 2006 12:15 PM
Subject: Medication not working?

I have been taking 1 mg two times daily of Requip but stopped about a week ago because I thought it was making me worse. I am taking 3-4 Hydrocodone a day now to keep RLS under control and 15 mg of temazepam at night for sleep. I also take hot baths, do floor stretches and walking. My doctor is working with me but not much relief so far and the meds are all so costly. My question is what medication should I try next? Is taking that much Hydrocodone a day addictive? I really don't need another problem.

I read every letter you post for information that might be helpful. Thank you so much for caring.

TW in OK

Medical Reply

You are getting close to the level of hydrocodone that may lead to dependence and tolerance. If you need a narcotic to control your RLS (which may be likely), then methadone is much more effective and safer in the long run. Doses such as 5 mg, 2-3 times per day are usually effective.

As the Requip is not effective (although you can increase to 2-3 mg two to three times per day), you may want to consider changing to Mirapex which is somewhat more potent.

Additionally, you may need to add low to medium doses of Neurontin (gabapentin) or other anticonvulsant medications to your regimen in order to keep the narcotic doses at lower levels and generally control your RLS.


Sent: Sunday, March 05, 2006 10:34 AM
Subject: Acupuncture helps RLS?

I don't like to take medications. I was wondering if there have been any studies about have acupuncture to relieve RLS.

Tonya L.

Medical Reply

None so far. Just a few anecdotal cases which may have been due to the placebo effect.


Sent: Monday, March 06, 2006 7:23 AM
Subject: New symptoms onset questions (see previous question: Sunday, January 22, 2006 3:55 AM)

For the last 9 weeks, my doctor has been prescribing Fentanyl 50 then 75 mcg for back pain/leg pain as it relates to my 3 level failed fusion surgery that I feel did bring about RLS. I suffered for 5 yrs with RLS before being prescribed Mirapex .25 afternoon/.375 at bedtime. It has helped wonderfully. My question is do you think that the Fentanyl could be causing severe RLS attacks that have occurred not only in my legs but now in my arms and trunk area. This has happened the last 3 times within 2 hrs. after changing my Fentanyl patch.

I then take a Lorcet for some relief. I usually never have the RLS symptoms during the day? Could their be a correlation between the two? The placing of the patch and the onset of RLS/pain?

Bill on my Birthday

Medical Reply

Anything is possible, but fentanyl (Duragesic patches) is one of the most potent narcotics that usually relieves RLS symptoms extremely well. Unless you are having a strange reaction to this medication, your experience is very different from most other RLS sufferers who greatly benefit from the Duragesic patches.

It may be that your back pain has caused an increase in your RLS but I cannot explain the time relationship between placing on the Duragesic patch and the onset of worsening RLS (except of course, that RLS tends to worsen in the evening....try putting the patch on in the morning and see if it causes the same problem).


Sent: Monday, March 06, 2006 2:57 PM
Subject: RLS, what dang fun!

I have had RLS and have been taking Klonopin at night but it seems to wear off much faster after 6 years of it every night.  I am going to date myself and go back to the ways of my generation and delve into Marijuana again but this time in tincture it seems to really help with sleep at night time.

Michael M.

Medical Reply

Klonopin does tend to cause tolerance and increased doses are needed to get the same effect. If you are to go off Klonopin, do this very slowly under a physician's supervision as you can experience withdrawal problems.

Marijuana does help RLS but of course, it is illegal which presents other risks.


Sent: Monday, March 06, 2006 5:14 PM
Subject: Is this RLS?

I'm not sure if this is what I have. Sometimes I wake up due to achiness in a leg--but never any creeping crawling sensation. I do feel that moving my feet or rubbing my leg helps. I had this problem as a little child and it seemed to be related to my feet getting cold at night, so I always wear socks to bed. It hasn't bothered me much as an adult, but now I'm pregnant and it's terrible--it's waking me up several times a night.

Does this sound like RLS? I've heard I should keep hydrated and also it could be due to calcium-magnesium deficiency, but I consume so much milk and yogurt and other dairy, I don't see how I'm calcium deficient!  

Sarah C.

Medical Reply

It does sound as if you may have RLS although the most diagnostic criterion the is almost irresistible urge to move your legs (although you may be able to resist movements for short periods of rest time). Pregnancy, especially by the third trimester, makes RLS markedly worse. Natural therapies rarely add benefit for pregnant (or other) RLS sufferers.












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