Patient letters on RLS symptoms and remedies- Page 57

If you are not doing better with Mirapex, a change to Requip may be helpful. You should not need the Xanax. Some of your insomnia may be due to withdrawal from Xanax.

A Response from Sallie R.

Sent: Thursday, February 17, 2005 6:11 AM

Subject: RE: Restless in Alabama

Thanks for your response. I started taking the Mirapex as you suggested. It's really amazing. I'm going to sleep quicker and sleeping sounder than I ever did with the Xanax. I'm taking one .25 milligram. I've not really noticed any adverse side effects so far.

Sallie R.

Medical Response

You should continue to do well in the future although you may need some small increases in the Mirapex dose over time.

Sent: Friday, February 04, 2005 9:39 PM

Subject: Side effects with Mirapex?

I have two distinct parts of my RLS. The first part is the URGE or NEED to move my legs, the Second part is the tremendous pain I feel in my thigh bones. I�ve lifted heavy weights my whole life (power lifter/ bodybuilder) and this pain is right up there with deep muscle pain from 700 pound squats! I�ve had RLS since I was about 8 years old. I am 40 now. It ebbs and flows through life. So far I have treated it by doing about 100 deep squats during the night when it flares up. I usually wake up between 2-4 times a night and sometimes I am just too tired to do the squats or to rebellious (I hate that a disease can control how I sleep).

My doctor prescribed Mirapex and since I am a high strung type of person to begin with, I told him I was concerned that any dopamine increasing or copying type of drug would probably hype me out ( I don�t drink caffeine because I�ll bounce off the roof if I do) so he also prescribed Oxazepam (a benzodiazepine) to help me sleep during the adjustment period while I was getting used to the Mirapex.

My family doctor (bless his heart) was prescribing me Tylenol #3 with codeine . It worked for a month (1 pill a night before bed), then I needed 1 pill before bed and 1 pill 4 hours later. Then I started waking up the next day REALLY irritable and angry for no reason.

First Night: .125mg Mirapex (half a .25mg pill). � My RLS was COMPLETELY relieved and it was the worst it has been in a long time. However, I didn�t sleep a wink. I wanted to try without the Oxazepam first because I don�t like taking pills.

Second Night: .125mg Mirapex � 15mg Oxazepam� Slept like a baby, no symptoms whatsoever. Woke up a little groggy. I normally wake up crisp and ready to go. This day I woke up and felt like a teenager trying to wake up. It took me about 45 minutes and a shower to get going and my legs still felt sort of weak.

Third Night: .125 Mirapex � 15mg Oxazepam � woke up feeling really hot, but no leg pain or RLS symptoms and went right back to sleep after removing the covers.

The next day, I feel a little dizzy, barely perceptible but enough to make me anxious. Ok, I�m a control freak, I hate when my body is doing weird things. I just want to feel NORMAL.

Fourth Night: I just took .125 Mirapex and am going to see if I can go without the Oxazepam and see what happens. I�ll keep y�all posted.

Is it normal to get a little dizzy?
How bad can the dizziness get?
What about anxiety from Mirapex (very mild)., is that common? Or at least common with high strung patients?
I noticed my shoulders, chest and face seem flushed with blood, like a niacin flush (no sensations) just more red than surrounding skin.
I am afraid when I hear stories about people falling asleep while driving because of Mirapex, how frequent is that?
If I decided one day to just cold turkey off of Mirapex, what would the most likely symptoms be, other than real bad RLS? I�m afraid of rebound effects. What if I am on vacation and miss a dose or forget the whole bottle? Would I freak out?

Kevin

Medical Response

Dizziness can occur with Mirapex but it usually occurs shortly after taking the dose and consists of lightheadedness when getting up or standing.

Anxiety is very uncommon with Mirapex, but anything is possible. Flushing does not occur with Mirapex.

Generally sleepiness occurs with doses of over 1.5 mg per day (much higher than what most RLS sufferers use) but has occurred at lower dose in some cases.

If you stop Mirapex cold turkey, you simply go back to square one (that is, where you where without it).

Sent: Saturday, February 05, 2005 11:01 AM

Subject: Sinemet legs

After being on Sinemet for 5 months and suffering horrible augmentation, I discovered that 3 medications I was on were dopamine blockers. I firmly believe they were the cause of my RLS from the beginning. I now take .125 mg of Mirapex about 6 P.M. every evening. If I wait any later, I have very jumpy legs within 30 min., not during the night. That one little pill holds me until the next night. I have tried to leave it off and "tough" it out but it's impossible.

Could the Sinemet have caused permanent damage to my legs? How do I get off the Mirapex completely? I want to be back to where I was before taking Sinemet and, without the 3 drugs I was taking, I believe I could live a normal life.

Thanks so much for your web site and your wisdom.

Louise W.

Corinth, MS

Medical Response

Sinemet should not have caused permanent damage. Usually when Sinemet is stopped, the RLS returns back to baseline with time. It may be that your RLS has worsened or there are other factors continuing to cause your RLS to be active (similar to taking the dopamine blockers that you were not aware of several months ago).

It does sound as if you will have to stay on Sinemet. A small percentage of RLS sufferers (about 10-15%) may get augmentation even from Mirapex or Requip. Stopping your Mirapex (and substituting a drug such as a narcotic) may be a way to see whether or not this may be your problem.

Sent: Wednesday, February 09, 2005 1:23 PM

Subject: Help!

My mom is 81 and has been a sufferer of RLS and now PLMS for years. She is in desperate need of knee replacement and her doctors are in fact urging her to go ahead, but we are very concerned how she could cope with the rehabilitation and need for no movement in the early stages after surgery with the extreme degree of RLS she has.

Can you give any information that might help us make this decision?

Thanks so much,

Ann S.

Medical Response

Weatherford, TX There is usually little concern in the post-operative stage as she will be getting pain killers (narcotics, generally) which take care of pain and RLS very nicely.

Sent: Wednesday, February 09, 2005 1:18 PM
Subject: Mirapex and insomnia?

I have been using Mirapex for a couple of months now, and it has resulted in some degree of insomnia. I don't have trouble falling asleep, but I invariably wake up 2-3 hrs too early and can't get back to sleep. Is it the Mirapex or the cessation of Mirapex that produces the insomnia? (I'm currently on 1.5 g 3x daily, with the last dose taken about 5 hrs before bedtime).

Would an extra dose close to bedtime reduce the insomnia or worsen it? I have to try something to conquer this problem.

When Mirapex causes insomnia, it generally does so when first trying to get to sleep. It may work differently for you, but as you are waking up about 7-8 hours after taking Mirapex which is just when its effect is wearing off, it seems much more likely that your problem is either not related to Mirapex or may be due to it wearing off.

Medical Response

Check with your doctor about taking an extra dose just before bedtime to see if that helps. If not, you may have to look for other causes of your insomnia.

Sent: Wednesday, February 09, 2005 4:58 PM

Subject: RLS in the arms?

I suffer from RLS, and the discomfort I experience also occurs in my upper arms. Is this a common situation, and should Mirapex help the arms as well as the legs?

Medical Response

It is very common for RLS to also occur in the arms. It usually indicates that the RLS is more advanced (but not always). RLS can occur in any muscle group anywhere in the body. Mirapex should help.

Sent: Friday, February 11, 2005 5:50 PM

Subject: RLS I think?.

My RLS all started after having a lumbar surgery in 1997. A few months after the surgery I started getting this very uncomfortable feeling in my legs around 9pm on until around 4am. The only relief came from getting up and walking throughout the night. After going to neurologist and spinal surgeons, I was prescribed many medications; Limbitrol, Klonopin, Lorcet, Ultram, etc.

The shorter version: I was told the problem came from a failed back surgery. In Feb. 2003, I moved on to the big job. A full blown lumbar fusion surgery by one of the best back surgeons in the country. I ended up with a 3 level fusion that caused spinal fluid leaking etc. It only added to my misery.

Via the internet, I realize now that I had RLS all along since the first back surgery. I have read and studied and tried many drug combinations only to have them help for a little while. Best so far are Klonopin and amitriptyline. Just recently with the great help of my primary care doctor in Maryland, I tried Mirapex and after getting the dosage right bingo. The first control of the crawling pain in my legs in over 15 months. Down side is the insomnia. Still no real sleep just far less pain. after being up for 10 days with only less than 2 hours sleep per night, I tired some Xanax 1mg with the Mirapex. I slept for 6hrs for the first time in many many months.

Is it recommended to take1mg Xanax with .25 Mirapex at bedtime? I tired Ambien but it only gets me 1-2 hrs sleep with the Mirapex.

I am now continuing to experiment from self education through your sight. I take Xanax 1 mg. 12 out of 14 days with the Mirapex .25 three times a day. On the drug holiday from Xanax, I use Ambien to get some rest. The Xanax for the insomnia from the Mirapex (which helps the pain/jerking) is the only relief I found in over a year. I even found out that taking the Mirapex earlier in the evening seems to help the effect of the Xanax.

Thanks,
Bill P.

Medical Response

Your combination of Mirapex and a sleeping pill is actually a fairly common one. Care should be taken with Xanax as addiction and tolerance can occur. More frequent drug holidays (such as every weekend or every other weekend) may help or even better intermittent use (only 3-4 nights per week).

You may try Requip instead of Mirapex as it is quite similar but may not cause the insomnia that you are experiencing from Mirapex and thus possibly eliminate your need for a bedtime sedative.

It sounds as if either the Mirapex is causing your insomnia (which occurs commonly enough and then increasing it would only make the problem worse) or that after years of having untreated RLS you have developed a conditioned insomnia (programmed not to sleep) which Ambien may not be sufficient to overcome. One way to tell would be to take Ultram or a narcotic (to relieve your RLS) instead of Mirapex and see if you can sleep well on that night.

A Response from Bill P.

Sent: Monday, February 21, 2005 5:28 PM

Subject: My Second entry

I have been experimenting with the correct level of Mirapex for my symptoms. Previously, I mentioned that I was a two time loser to back surgery that I feel has led to my RLS problems that include pain. I first took .125 mg of Mirapex and it stopped the crawling pain with the first dose. My primary care doctor increased the dosage to .25 mg late afternoon and then .375 mg before the evening onset of RLS that included jerking of my lower limbs.

My problem now is the Mirapex is helping the RLS better than any medications in 7 years but I continue being unable to sleep. I have added 1 mg Xanax at bedtime and am feeling better than I have in a long time. The Mirapex is great but it seems I need a sleep agent and Ambien does not do it.

Do you think this is an ok regimen of meds as long as I take a drug holiday from Xanax every 12-14 days? I have been trying some Neurontin for those 2 days off Xanax in hopes of getting some sleepy effect as I had previously with Neurontin. I already take some Ultram for back pain.

Would it be possible that upping the Mirapex at night that it would also help my sleep. It sure would be nice if the right combo of Mirapex would also eliminate the insomnia factor.

Bill P. in Md.

Medical Response

Adding Neurontin (and perhaps lowering Mirapex at the same time) might also be helpful, but only trial and error will tell you what the correct doses of each medication will be and if this is the right solution.

Taking Xanax at 1 mg per night with drug holidays may work out but addiction and tolerance are still concerns with steady use of benzodiazepines.

Sent: Sunday, February 13, 2005 5:28 PM

Subject: Additional symptoms with RLS?

I suffer from RLS and have for a number of years. My mother also suffered from it. I take two medications and experiment with my doctor's guidance how much and how often. I also am beginning to experience the same feeling in my lower arms. The attacks seem to be more intense around my ankles and can be painful. In fact, my ankle bones and tendons are sore most of the time.

I have another concern and am wondering if anyone else has a symptom such as mine. My ankles have become increasingly stiff over the last year and I have difficulty walking. I refer to it as "slap footing" when I walk because of the slapping noise I make. It makes it extremely difficult to walk for any period of time and a slight incline can be a nightmare. I am wondering if this is related to my RLS?

Medical Response

Your "slap footing" is likely not related to RLS but rather related to some type of neuropathy (nerve problem) that may be affecting the motor function of your ankle.

Sent: Sunday, February 13, 2005 5:37 PM

Subject: Another RLS/PLMD Victim

I'm a 39-year-old female who has suffered from RLS and PLMD since I was a teenager. I actually became aware of it during a bout of scarlet fever when I was 18 years old. The PLMD was so severe I was practically thrashing about the bed most of the night. While I go for stretches of time (sometimes weeks) without an episode of RLS or PLMD, when it does occur it can last for many nights and usually means many hours of agony and maybe a couple hours of sleep. My RLS generally affects my thighs and calves and I've tried most of the non-medication remedies mentioned on this website. I generally don't have any symptoms during the day except maybe when on a long flight, or maybe I just don't notice them because I'm moving about.

I am genetically predisposed to being very skinny and my doctor assured me there is nothing wrong with me; it's just genetics. Because I'm constantly underweight (based on the weight/height chart) two years ago I started taking Peritol to enhance my appetite in a bid to gain weight. While on the Peritol I noticed that my RLS and PLMD severely worsened, so much so that I had to stop taking it if I ever hoped to get a good night's sleep. This didn't make me happy since the Peritol was the only drug that I found that actually increased my appetite (I've tried everything there is).

I'm not sure what class of drug Peritol is but I'm wondering if it's in the antihistamine class since so many people complain that antihistamines worsen their RLS and PLMD. I don't take any meds for my RLS and PLMD (actually I was embarrassed to even mention it to my doctor for fear he would think I was nuts). I do take Imovane occasionally to sleep if I've had a few bad nights of RLS and PLMD. It works in 20 minutes and I don't feel groggy and yucky the next day. It does leave a slight metallic taste in your mouth but it's worth it just to be able to get a good night's sleep.

Finding this website was a Godsend. It's comforting to know I'm not alone in my affliction,

Annie

Medical Response

Peritol (cyproheptadine) is chemically 1-methyl-4-(5-dibenzo-cyclohepta-trenilidin)-piperidine hydrochloride. It is not an antihistamine but has a pronounced antihistamine and anti-serotonin actions. That means that this drug will very likely cause worsening of RLS.

You should not have any embarrassment at talking to your doctor about your RLS problem. Rather, he should be embarrassed if he cannot answer your questions and take care of your problems fully.

Sent: Monday, February 14, 2005 5:43 AM

Subject: Sleep Disorder or Sleep starts?

I am having Sleep Starts Sleep Disorder (During the transition period between wake-up and 'sleep state' I am getting jerks starting from left side of the stomach and moving up up the head. This is repeated minimum 2 to max. 10 times. Afterwards the sleep is normal and the subsequent day is normal. During day time also it occurs with 1 or 2 jerks when I happen to be drowsy between work or during lunch time. I am suggested Sleep EEG (Polysomnography) by my doctor at Chennai, India which of course is costly Rs.9000/- per night). I am planning to take shortly.

Is the disorder RLS? or PLMD ? or something? Right now I am under RIVOTRIL 0.5mg twice daily. Is there any permanent cure for this or I have to spend the rest of life under medication. I know Yoga, Transcendental Meditation, Pranayama and Relaxation techniques. Can I cure myself without medication?

I am aged 49 and I am having this Sleep Starts disorder for the past 5 Months only. Otherwise I am normal after the sleep and during wake-up period. I'm an Electronics Engineer working at CHENNAI, INDIA

Kindly reply,

N.V.

Medical Response

Sleep starts, also called hypnic jerks are normal and very common. They occur in stage 1 sleep (the transition from awake to real stage 2 sleep). It is unusual to have them occur every day and be that bothersome.

I would generally not recommend taking Rivotril during the daytime as it can cause increased drowsiness and cause decreased alertness and accidents. I actually do not even like using this medication at bedtime either as it has a very long half-life of 30-40 hours which means it will be active the next day and cause drowsiness (often not noticed by the user).

You do not really need a sleep study or any other testing for this problem but those tests would likely confirm the diagnosis but not change the treatment. It does not sound like PLMD or RLS.

Sent: Tuesday, February 15, 2005 11:22 AM

Subject: RLS and asthma?

I'm beginning to suspect I have RLS, but have not been diagnosed. Intermittently (about 4 times a year), I'll have a stretch of a few days to a week where when I go to bed, I am repeatedly woken up by jerking legs, arms, or even my stomach muscles.

This seems to also be connected to the times that my mild asthma gets a little worse.

Is there a connection between RLS and asthma?

Bethany

Medical Response

There is no known connection between asthma and RLS. Some of the asthma medications may have a potential to worsen RLS, such theophylline (not used much anymore) and perhaps some of the beta agonists (such as an albuterol inhaler).

Sent: Tuesday, February 15, 2005 3:00 PM

Subject: Re: PLMD

Thank you very much for your helpful advice about my severe PLMD problems. I have asked my doctor for Mirapex as you suggested. He has no experience of it but complied with my request to start with .125 mg dosage once nightly on the basis of the information you have given me. I have three additional questions:

1. It has been suggested by my younger sister, who has young onset Parkinson's Disease, that I should be taking Motilium for a few days prior to starting Mirapex to reduce side effects such as nausea. Is this so or can I just take it by itself? Should it be taken with food?

2. What ongoing monitoring is required and how often -eg blood tests, organ function tests, blood pressure etc if I am taking Mirapex regularly? I am waiting to see a neurologist but will have to wait 6 months or more unless I go privately and not on our free national health service.

3. Should I start the drug at a weekend when I am off work in case of side effects?

Thanks in anticipation once again. Your advice is invaluable as my doctor has no experience of a PLMD problem as severe as mine.

David,
Ireland

Medical Response

Nausea does occur with Mirapex but is usually only a problem with the higher doses which are used by Parkinson's disease patients. If the dose is increased slowly, nausea usually is mild and temporary and does not need anything else. If nausea does occur, then taking the Mirapex with food may be helpful. In the few cases where nausea persists at a significant level, taking Motilium prior to the Mirapex would be a reasonable option.

No monitoring of anything is necessary while taking Mirapex. If you are concerned about side effects then waiting until the weekend would be fine. At the very low doses used for RLS and PLMD (especially when starting), side effects are much more uncommon so it is usually not that important to wait until you are off work.

Sent: Thursday, February 17, 2005 9:42 AM

Subject: RLS is killing me!!!

I just came across your site and it makes me realize that I am not in this alone. I have had RLS for 20 years, I never had it diagnosed until I was in my 30�s. My family carries the Huntington gene so I always thought I was in the beginning stages of this and never wanted to be diagnosed. I have since been tested and I am not carrying the gene.

The most sleep I get is 2 hours at a time and I have very bad episodes when I do not sleep at all. My neurologist had me on Topamax which made me into a walking zombie and still didn�t work; I am on Sinemet now without relief. I spend most of my days just crying I guess in part due to exhaustion. I find many doctors do not take this serious.

I was recently admitted to hospital because my body just gave out it I just needed sleep but all the doctors want to do was send me to the mental ward and put me on antidepressants and when I informed them it would only make it worst they really decided that I had a mental problem. I had even heard them discussing whether I was coming off some illegal drug because I describe the feeling as something crawling under my skin.

It was not until my own doctor showed up and assured them that I was perfectly sane. I do realize that to a lay man RLS may sound a little out there but it does worry me about the lack of knowledge some doctor have about RLS.

Hats off to you for your dedication to RLS and giving us hope.

Sincerely,
Alicia

Medical Response

Most all RLS patients can get very significant relief with the proper medications (and usually avoid bothersome side effects if taken correctly). You should not rest until you find a doctor (or get a referral) who has the expertise to treat your RLS effectively.

Sent: Friday, February 18, 2005 5:13 PM

Subject: Questions on daytime RLS?

Several weeks ago I wrote regarding treatment for daytime RLS symptoms. I have tried both Requip and Mirapex at night and they work fairly well. I also take 30-35mg of hydrocodone during the day which eases the symptoms. My problem is that taking dopamine agonists or opiates during the day makes me groggy and impairs my ability to work. I was also concerned that the dopamine agonists may be causing rebound and augmentation.

In your response you suggested that I increase my does of Mirapex. After consulting with my doctor we increased the dosage from 0.125mg to 0.25mg. However, after about a week of the higher does I began to experience symptoms earlier in the day. You also recommended methadone as a substitute for the hydrocodone.

My questions: Would increasing the does of Mirapex help or exacerbate augmentation? Is methadone more or less analgesic or sleep-inducing than hydrocodone? Is there more or less of a concern with tolerance or dependency with methadone than with hydrocodone? I have read that most people can function quite well on the drug. Thanks for your help.

Marvin

Medical Response

I find that methadone works very well for RLS patients. It is often the most potent narcotic for RLS lasting longer than the others. There is great variation to how well any of the narcotics are tolerated and only trial and error will tell you which one works best for you. At equally potent doses, all narcotics have the same potential for addiction/dependency.

Often increasing the Mirapex dose will help with the augmentation but it is just as likely that it may accelerate the problem.

Sent: Sunday, February 20, 2005 8:53 AM

Subject: Gabitril for RLS?

I took Mirapex (0.125 mg midday and 0.250 mg at night ) from 1998 until April 2004. It was no longer working effectively so in April 2004 I was switched to Neurontin (400 mg at bedtime) and Mirapex (0.125 mg midday). It controlled the RLS wonderfully well, but by December I was overwhelmingly depressed. A few days after being taken off Neurontin the depression disappeared.

I was also diagnosed with moderate sleep apnea in May 2004. Tried both a CPAP and an oral sleep appliance to no avail. I think I must have nasal blockage causing problems. My PC doc said the nasal passages were too swollen to see if I might have a deviated septum. Flonase has not helped.

In December 2004 my Primary Care doctor put me on a low dose of Gabitril increasing it gradually to 8 mg at night before bedtime which is what I now take. I still take 0.125 mg of Mirapex during the day to control evening symptoms which it does pretty well.

Problem is that I am up and down every night now, getting maybe an average of 3 hours sleep. Many days I feel like a zombie, although some days are OK despite the lack of sleep. It seems not many are on Gabitril so I can't get a line on it. Any suggestions? I think my doctor will want me to keep increasing the Gabitril.

Pat, 60,
Mesa

Medical Response

Gabitril is a very reasonable anti-seizure drug to use for RLS but it is similar to Neurontin in that sedation is a significant side effect. Your problem is even worse as you have untreated moderate sleep apnea which should make you feel like a semi-zombie all by itself.

Normally, I would suggest taking Ambien to get more sleep but the real problem is to get your sleep apnea problem fixed first. You may need to use a nasal steroid spray (like Nasonex, Flonase, Nasacort, etc.) or see and ENT specialist for more advanced treatment so that you can use CPAP.

Another choice for you RLS would be pain killers, but the narcotic ones may cause the sleep apnea to worsen (tramadol probably does not).

Sent: Wednesday, February 23, 2005 6:54 AM

Subject: Help!

I have had RLS as long as I can remember, my father and 2 sisters also had it but to a lesser degree. I saw a neurologist about 20 years ago and he confirmed the diagnosis, he put me on Sinemet miracle until "augmentation". About 10 years ago I went on Permax and it has been wonderful until just recently when again "augmentation" occurred.

My doctor has now started me on Requip but it hasn't had much effect on the RLS and I seem to have developed insomnia, and when I do fall asleep I have horrific nightmares, they are so bad I am almost glad I have insomnia, is this a side effect of Requip? Also does Mirapex have the same side effects and should I try it?

Medical Response

Although Mirapex may have the same side effects as Requip (they can both cause insomnia, but you can only tell after trying the drug). It is quite likely that Requip is causing your insomnia.

If Mirapex does not work better for you, other choices would be Neurontin or pain killers.

Sent: Wednesday, February 23, 2005 5:49 AM

Subject: RLS treatment with Klonopin?

I've been recently diagnosed with RLS after suffering for the past 20 to 25 years with pain in my legs. Growing up everyone thought it was growing pains and to some extent that may have been the case. Now at 36 I don't think that is true. After going to various doctors over the past 3 years, my current doctor decided that he'd help find out what is going on.

He tried me on Feldene and Bextra, which both never really helped. Feldene actually did give me some relief but, made me very sick. I've had an MRI, X rays, and EMG tests. All were pretty much normal. The EMG doctor and I have both came to the same conclusion of RLS after talking about symptoms and discussion. He has been treating me with various things.

First off with Clonazepam 1mg before bed and 0.5mg Ultram for pain during the day if needed. The Clonazepam worked wonders for night sleep but, makes me feel tired for a 4-6 hours the next day. Not bad enough for me not to want to use it but, I wanted to try something else. He then gave me samples of Sonata. The Sonata kept me awake, similar to a large dose of caffeine.

Next he put me on Neurontin 100 to 300 mg before bed (2 weeks ago). At first the Neurontin seemed to help with pain but, it keeps me from falling asleep regardless of what dose. I noticed that people are taking up to 600mg and up before bed so, I tried various doses up to that. I was awake most of these nights.

I resorted to taking a Clonazepam to finally fall asleep. The Neurontin does help with pain but, keeps me awake also. I tried the Ultram at night but it also keeps me awake but, makes me very tired after it wares off. Any suggestions of what to do? My wife has helped me control the leg movement by making me aware that I'm doing it. Seventeen years of this has made me stop. However, since I do not move my legs any more my legs hurt worse.

My pain starts anywhere from noon to dinner time and lasts most of the night.

Please help,
Paul S.

Medical Response

Klonopin (clonazepam) is a very long acting drug (half-life of 30-40 hours) and it is very common for next day sedation to be a problem. There are better sleeping pills (such as Ambien) but those should be used only after your RLS is treated properly.

You have not yet tried the most effective and useful drugs for RLS which are Mirapex or Requip. One of these drugs should help resolve your RLS symptoms so that you may not need any more drugs to help you sleep. If the above dopamine agonists do not help, then the pain killers (narcotics or Ultram) would be the next choice.

Sent: Friday, February 25, 2005 6:32 AM

Subject: Lamictal with Tramadol & Mirapex?

I've recently begun taking Lamictal. I've been on it for about 3 weeks and have worked up to 50mg by now, with eventual dosage of 200mg. Previous to beginning Lamictal, I had been taking Tramadol on most days (for the last 4 mos. or so) and that seemed to keep the RLS pretty much at bay. I stopped the Tramadol when I introduced Lamictal because I didn't like the idea of taking these 2 together and had read on a couple of sites that it's not good to take Tramadol with Lamictal, although my doctor. He says they don't conflict.

In the time I've been on the Lamictal my RLS symptoms have increased significantly in both frequency and severity (maybe because I stopped the Tramadol at the same time?) and have had to begin the Mirapex again. Actually, I get the best results with 50mg of Tramadol with .25 mg of Mirapex daily. I'm so tired to trying to juggle all these meds and deal with all the side effects.

My questions are:

1. How does Lamictal typically affect RLS?
2. Is it okay to take Tramadol along with the Lamictal?
3. Is it okay to take Mirapex with the Lamictal?
4. Is it okay to take both Mirapex and Tramadol with the Lamictal?

A note on Tramadol, I don't like the way it seems to affect my mood. While it gives a rather euphoric feeling when I first take it (which is nice), as it begins to wear off, my mood begins to drop. It feels like I'm on an emotional rollercoaster sometimes. My mood is much more constant since I've been off it, but it works so well for the RLS that I'm tempted to start it again. Any comments on this issue?

A lot of questions - thanks for your input!
Kelly

It is alright to take Mirapex, Lamictal and Ultram (tramadol) together. Lamictal, like other anti-seizure drugs usually helps RLS, but this can vary (by the way, have you been prescribed Lamictal for your RLS or for some other problem?).

Your mood changes with tramadol are somewhat uncommon. You might want to try a narcotic such as Vicodin instead (you can even alternate with tramadol) and see how it works.

Unfortunately, it is often necessary to juggle drugs when treating RLS.

A Response from Kelly

Sent: Tuesday, March 01, 2005 6:25 AM

Subject: RE: Lamictal with Tramadol & Mirapex? - FOLLOW UP

In answer to your question, I've been prescribed Lamictal for another condition unrelated to RLS. One issue that I forgot to mention, which is the main reason I dropped the Tramadol. After taking it for some time I began experiencing a strange and troubling side effect. While napping or just as I'm falling asleep, I would have an involuntary, very forceful bite response (like a strong jaw seizure) where I would bite down HARD on my tongue! The pain of this would of course wake me up pretty violently.

It only happens during the course of falling asleep or being asleep for a few moments, and doesn't always happen. I know this is related to the Tramadol because when I stop taking it for an extended period of time, it stops, but starts again when I begin taking the Tramadol again. I would also have very slight involuntary body jerks occasionally while on it (not noticeable to anyone but me). They aren't painful or troublesome like RLS symptoms - I've just taken notice of them when I'm taking Tramadol.

Any thoughts on this? I thought it could possibly be an allergic reaction to Tramadol, or that serotonin overload condition related to combining SSRI's & Tramadol. that I've read about (although I'm not on any SSRI's)? By the way, this was happening before I began taking Lamictal. I've found most doctors I've seen don't have much knowledge about RLS and meds combos - inexcusable considering how many people suffer w/this condition!

Thanks again for your response, it's v. much appreciated.
Kelly

Medical Response

I have seen no reports even remotely similar to what you are describing with your tongue biting problem with tramadol. It is thus very difficult for me to comment on this although if it comes and goes with starting and stopping the drug then you are likely right about the correlation.

There is a small concern about lowering the seizure threshold when combining tramadol with SSRI type medications (which happens quite rarely, thankfully), but as you stated, you are not on that class of medication so that should not be your concern (including the possible serotonin overload syndrome). Although you describe your tongue biting problem "like a strong jaw seizure" that problem has nothing to do with real seizures.

Sent: Friday, February 25, 2005 6:53 AM

Subject: VICODIN AND ULTRAM

I have had RLS all my adult life and I am now 54. My sleep doctor has me on Vicodin and Ultram. I have tried Mirapex and Requip and it just didn't work out. One week I take 3 5mg/500 Vicodin every night and then alternate the next week with Ultram 3 50mg. I have been doing this for a year now. This has worked out fine and stopped my RLS at night.

Will the Vicodin over time start to effect my liver? Should I just be on Ultram? Also could you suggest how to take a drug holiday from these medications? In one year I have gone from 1 pill to 3 pills each night and I am kind of worried. I have noticed the pills do not seem to be as effective as they used to be. I do want to say these meds did give me back my life, sanity, and sleep.

I wanted your input so I could run all this by my doctor on my next visit. Thank you in advance for your reply and this wonderful site.

JOANN

Medical Response

Generally, alternating the narcotic (Vicodin) and Ultram should work very well. It may be a little better (only trial and error can tell you this) to alternate every 3-4 days rather than weekly. That way you take one type of pill only half the week which gives you a drug holiday of half a week for each drug. Methadone may be a better choice for the narcotic.

It may be helpful to add Neurontin 1-2 hours before bedtime and see if that can help you reduce the dose of your pain killers.

Sent: Friday, February 25, 2005 2:52 PM

Subject: Problems with Neurontin?

Warning:

I used Neurontin for a year or so. It helped at first. After about a year I had been planning to talk to my doctor about easing off of it, since it no longer worked. Also, I had been noticing I was more forgetful, but only enough that I wasn't sure if it was from the Neurontin or from getting older. Then I began getting headaches. Then after a few weeks, tremors and forgetfulness. Nobody thought it was the Neurontin. They did CT scans, blood tests, and many other things to rule out other problems.

I saw five or six doctors. I was afraid to stop taking Neurontin abruptly because the instructions warn against it, and also I figured I would be addicted and didn't want to make whatever was wrong with me worse by getting no sleep at all. One doctor told me "Neurontin is safe" (his exact words). My symptoms were not listed on the Neurontin literature. I thought I had some kind of wasting disease that nobody could diagnose, and I was very afraid I would die from it in time.

It turned out that it was the Neurontin that caused my problems. When I stopped taking it, the headaches were gone the next day, and the shaking was much better. Over the next couple of months I was almost completely recovered. The reason I'm writing this is to emphasize that you'll never know how you will respond to medication (herbs included), and if you have to balance the benefit you get from the medication with the danger.

I don't know what long-term damage I did to myself, and I won't be trying any drugs soon, even though I rarely truly relax, I sometimes only get a couple hours of sleep, and my husband feels like I am pushing him away because I have such a hard time laying still in bed. Weigh all the ramifications before you take a chance on going through the same nightmare I did. And don't let anyone talk you into taking medication (even herbal) if you're not sure it's right for you.

Remedies:

I find that it helps if I take a hot shower in the evening, and my bedroom needs to be cool at night. A cold shower in the summer when it's hot is also helpful, but difficult to do. I have to find the right balance of exercise, not too much or too little. I do leg lifts while lying on my side when I'm in bed and can't keep still.

When I was young I could relax by contracting and relaxing each set of body muscles, but now I have to take my thoughts completely away from my body or it gets worse. Because it's worse during the day if I'm bored I know there's a psychological component, but hypnotherapy didn't help at all. I'm not a very suggestible person, though, so it might work very well for somebody else, especially if you find the right hypnotherapist.

Susan K.

Medical Response

You are quite right that any medication including the over the counter ones can cause serious problems in given individuals. That does not mean that we should withhold drugs such as Neurontin which help many patients and generally cause more common side effects like drowsiness.

When side effects are not listed for your drug it means that almost no one has every had that problem before as even trivial rare side effects are listed immediately as they crop up and are reported. Although we should be careful when taking drugs we also do not want to cause too much alarm about taking drugs so that people who need them will be too reluctant to take them.

Medical A Response from Susan K.

Sent: Tuesday, March 01, 2005 8:31 AM

Subject: RE: Problems with Neurontin?

Thank you for your response. I agree with you, that drugs are necessary for many cases, especially if suicide, severe pain, etc are involved. My experience is one of many possibilities, and has educational value to patients who might think doctors know exactly how medications work, when in fact sometimes scientists and doctors admittedly don't know the exact process. Of course my case was unusual.

But I'm not the only one that has had a problem with Neurontin, which has been nicknamed "Morotin" by some. It's important for a patient to realize that new symptoms can occur even when he's been taking a drug for a while and that his understanding of his response to medication can override a doctor's perception that the medication is safe.

Susan K.

Medical Response

Patients should always be vigilant for side effects with medications. It is not unusual for patients to have the exact opposite side effect to a given drug and thus be dismissed by their doctor as not having a real problem. Every side effect should be reported and evaluated thoroughly until they are figured out (unfortunately, often by trial and error). With this in mind, most drugs can be taken safely and withdrawn before more serious problems occur.

Sent: Sunday, February 27, 2005 2:09 PM

Subject: Mirapex for RLS augmentation?

I had been on Sinemet for over a year. Just one at bedtime. I recently went to the doctor with my legs aching during the day. I now have been taking 1 Mirapex at bedtime for the last 2 nights and no Sinemet. How long does the rebound effect continue from Sinemet? I have been unable to sleep, headaches, and leg aches. The insomnia and headaches began with the Mirapex.

My doctor now has prescribed Ambien but it has offered very short term relief (4 hours max). I have found your website to be very useful and wish I would have known before I took Sinemet.

Thank you,

Sheri M.

Medical Response

It sounds like you have developed augmentation (RLS becoming more severe and occurring earlier in the day) rather than rebound (which occurs just after the previous dose wears off and is less common). This problem can last for quite awhile but is usually improved with Mirapex.

You may want to try Requip instead of Mirapex and see if that causes less insomnia and still takes care of your RLS symptoms (which it should). You may even try 1/2 of a Mirapex or Requip tablet. Other choices would be to add a small dose of Neurontin or a pain killer and see if this will work with or without low doses of Mirapex or Requip.

Sent: Tuesday, March 01, 2005 2:16 PM

Subject: Electric Blankets Etc.

And many, many thanks for this helpful site. I am a 54-year old female who's had RLS since I was a teenager. In my more polite moments, I call it 'The Grunions'.

How does being in the proximity of electrically-generated heat aggravate RLS? In my case, I absolutely know there is a direct connection. For example, if I spend the day in a room with a portable electric heater, even at a distance or 10 or more feet, the night will bring severe RLS in arms and legs. A heating pad, electric mattress pad or blanket will do the same.

Of course, I avoid these things but am mystified as to how such things can exacerbate RLS and even bring on a nasty attack during an otherwise quiet phase. A hot shower or bath won't do it, but proximity to electrically-generated heat will. It's as though the electric current escapes its insulation and jumps right into my bodily wiring. Is this common and how does it happen?

Listed under your 'Non-Conventional Treatment' page, Section 5, ('click here....herbal therapy'), I ran across a link to Applied Herbal Solutions. Their product called NeuroEase is a topically-applied cream that gives me considerable relief. Here's the link: http://www.tinasherbs.com/

Mary

Medical Response

There is no explanation as to why electrically generated heat would bother your RLS. I have not ever heard that before, but by adding this to our website, we will see if other RLS patients have experienced your problem. In fact, some RLS patients actually get improvement with heating blankets.

We will add your information on the Herbal Therapy with your letter so that others may view it.

Sent: Wednesday, March 02, 2005 7:22 AM

Subject: RLS and serum ferritin?

I'm 68 and have had RLS symptoms for about 25 years, mainly the urge to get up and run when I sit down in the evening or go to bed. tingling of the extremities began about 7 years ago, and other problems were ruled out. I have found progressive muscle relaxation to be helpful when I go to bed. More recently I have discovered that just my wiggling my toes and fingers very slightly for about one minute, relaxing for a minute, wiggling again, helps. While wiggling most of my symptoms go away, and are reduced slightly after each minute of wiggling. Usually 4 or 5 of these minute sessions and enough to reduce the tingling and restlessness to a level where I can go to sleep.

I asked my doctor to run a ferritin test to see if I should take iron supplements. He would not authorize the test, saying I should just take a supplement for a month to see if it helps. But my pharmacist told me not to take the supplements unless I show a low iron level, as there are dangers in taking iron supplements.

Any comments on the above two items-- wiggles and iron/ferritn level test --would be appreciated.

Medical Response

Many RLS patients use similar techniques (like your wiggling) to get relief, but usually the relief is unfortunately quite temporary and short lived.

Your HMO doctor should order the serum ferritin level and if under 35-45 (higher than the accepted normal values from most labs) then you should take iron supplements. You should not take iron supplements without checking this level first.

Sent: Tuesday, March 08, 2005 8:45 AM

Subject: Is it RLS?

For about a year or so I am troubled by symptoms that are almost identical to the ones listed for RLS, except for one big difference. It does NOT happen in bed. Usually later in the evening, sometimes anytime in the day, my legs start to feel like I have to move them. Sitting in the easy chair is impossible for any length of time. I have to get up. Standing makes it almost completely gone. Quick exercise like striding up the stairs to put the kids to bed gives me 10 or 15 minutes before it comes back. I cannot ignore the symptoms. No suppressing the urge to move.

But when I give up and go to bed, it goes away. I fall asleep really well anyway, it is waking at 4 am that is the problem. My wife says I sleep fine, no jerking legs or anything. I wake up with no symptoms and everything is fine until later in the day.

Is this RLS? Any suggestions?

Don

Medical Response

It does sound like RLS. It may be that when you go to bed that you are able to fall asleep before the onset of RLS symptoms occur (which would then prevent you from falling asleep). When you wake up at 4 am, the symptoms obviously occur quickly enough (before you can get back to sleep) and thus cause insomnia.

Treatment with a small dose of Mirapex or Requip at bedtime and an hour before sitting in the evening would likely resolve your RLS symptoms.

Sent: Tuesday, March 08, 2005 10:34 AM

Subject: Plane rides with RLS?

I have been taking Mirapex for 4 years now for my restless legs and am now taking .375mg about 6 o'clock every night. I am about to go on a trip and am anticipating the usual difficult time on the plane when I have to mostly stand up. My doctor advised me to up my dosage before my flight. Should I increase my dosage the day I fly out or the day before and If so how much of an increase should I take?

Thanks so much,
Beverly

Medical Response

Generally what I advise patients to do is to take an extra dose (same dose that works for you in the evening) of Mirapex about 1-2 hours before boarding the plane. This generally should last 6-8 hours so if you are going on a very long trip (over 6-8 hours), you would take an additional dose in 6-8 hours.

In addition, I often give my patients a pain killer (tramadol or a narcotic) which they can use if the RLS acts up despite the above therapy. It will usually kick in within 30 minutes and then let you sit still in your seat.

Sent: Thursday, March 10, 2005 8:43 PM

Subject: RLS and medication withdrawal

I found your website and was wondering if you could answer a question for me. I have been on the antidepressant Lexapro for about a year and a half now, and I have tried to wean myself off of it a couple of times. Which I have decided not to do for now. When I did attempt to do so, I experienced symptoms similar to RLS and could not sleep at night.

Now I am having problems with insomnia (for different reasons) and found that over the counter sleeping pills made me unable to stay still all night! It is an awful feeling to be mostly asleep while my body remains awake and "kicking". My husband was not too appreciative either...

Needless to say, I don't take them anymore and have been researching other ways to get to sleep better.

Are there any studies on antidepressant (withdrawal) or antihistamines causing RLS? I am just curious, and a little concerned about developing this syndrome.

Thanks so much for your time,

Laura P.

Medical Response

Antihistamines (which are all of the over the counter sleeping pills) are known to worsen RLS, often quite severely. They do not cause it as you must have the problem first. Perhaps your RLS was developing and the antihistamine brought you over the edge.

Lexapro may worsen RLS but withdrawal from it should not be a problem.

Sent: Saturday, March 12, 2005 4:32 PM

Subject: Migraine with PLMD?

I was recently diagnosed with PLMD and am in the process of reading the patient letters. In the meantime, I would like some additional feedback. I originally went to see a neurologist because of excessive migraines. He diagnosed the cause of the migraines due to PLMD. I had been on amitriptyline for years and slowly weaned myself off of that.

Right now, I am taking 1.0 mg of Mirapex at night. I was unable to fall asleep and stay asleep (side effect); of course the daily migraines continued. My doctor put me on Ambien which I have been taking and falling asleep and staying asleep; but the daily migraines continue. I of course will discuss this with my doctor, but how high should I increase my nightly dosage? Should I take some during the day? And I understand that Ambien can be addictive?

Thanks,
Mary S.

Medical Response

It would be very unusual for PLMD to cause migraines. It is likely that your migraine headaches are totally independent of your PLMD problem.

PLMD is often misdiagnosed. It does not really matter how many leg jerks (PLM's) you have while asleep unless they cause arousal. The PLM arousal index (how many PLM that cause arousals per hour) is what determines whether or not the PLM's are causing problems by disturbing your sleep. Many doctors do not realize that and try to treat the non-arousal PLM's. We only call PLM's with many arousals (usually over 25 per hour) PLMD (the D stands for disorder).

Mirapex can cause insomnia but if you do not need the drug that may solve your problem. Ambien is not addictive. There are no studies to support this fact (as they have not been done) but those of us who use the drug have never seen a case of addiction.