Patient letters on RLS symptoms and remedies- Page 79

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I am prescribed Neurontin (900 mg 2x daily) as part of my regimen for RLS/PLM and have had relative success with this medication. Recently, I have noticed that about 7 p.m. or so I have begun to feel nervous, unsettled, panicky or what I might describe as "anxious." I sometime will get a flushed feeling. I have noticed that these feelings will diminish and go away about an hour or so after I take my first 900 mg of Neurontin around 8 p.m. I am absolutely fine up until about 7 p.m. each day.

It has become a regularly occurring event and does not happen intermittently. I discussed this with my doctor who said something to the effect that this seems logical based on the life or half-life of the Neurontin. I am confused. I am not taking the Neurontin for anxiety but RLS/PLM. I know that Neurontin is sometime used for anxiety but why should not taking it cause me anxiety even though I was not being treated for anxiety before being prescribed the Neurontin.

To me it seems that now if I do not take the Neurontin I will have an anxiety disorder. Does that make sense? I was talking to someone who indicated that this same effect is sometime associated with Klonopin usage.

Neurontin does not treat anxiety problems. However, it does have sedative side effects (usually the sedation limits the use of Neurotin) that may be helpful for those who have problems falling asleep due to anxiety or RLS (or any other reason). It is possible that if your RLS may be starting to act up (due to the Neurontin not lasting long enough as it is often taken three times per day for those who have RLS starting in the morning) that the anxiety may be due to these RLS symptoms about to start.

It is likely that adding another (smaller) dose of Neurontin (or just spreading your current 2 doses into the same amount but in three doses), you may eliminate your problem. This is a much different issue than with Klonopin (which has a very long half-life of over 40 hours).

Sent: Wednesday, January 02, 2008 6:19 PM
Subject: Treatment for RLS, Isqueez?

I take Requip 4 mg at bedtime, Klonopin 1mg at bedtime, Lyrica 75 mg twice a day, and Cymbalta 60mg daily. I have gained weight on this regimen and my RLS continues to make for sleepless nights. Any recommendations? I exercise 60 minutes a day on an elliptical low intensity to assist in alleviating symptoms I am desperate.

Your Cymbalta may be worsening your RLS. If feasible, it might be worthwhile to change this medication to Wellbutrin (one of the very few RLS friendly antidepressant drugs) which might resolve many of your RLS issues.

You are already on the maximum dose of Requip which indicates that this drug might not be that helpful for you (it should be quite helpful even if the Cymbalta is causing some of your RLS). It may be better to consider another class of RLS medication such as the painkillers or increase the Lyrica to 150 mg twice daily.

Klonopin is not one of my favorite drugs as tolerance occurs readily and it have a very long half-life of 40 hours.

Isqueez (foot and leg massaging device) may help temporarily (minutes only) but if that helps you fall asleep, it may be worthwhile. However, try before buying it as it may help only some RLS patients.

Sent: Thursday, January 03, 2008 8:19 AM
Subject: RLS and blood oxygen levels?

My mother is now 77 years old. She has RLS and was taking Requip for her problems, which seemed to help. She also has osteoarthritis in her lower back/spine area and was taking Naproxen for that. A month ago she found out she was anemic and losing blood due to bleeding ulcers in her stomach. They gave her a blood transfusion and took her off of her Naproxen and Requip.

However after spending days with her in the hospital she was using oxygen and when she used the oxygen she never moved her legs at all. She slept very peacefully. I mentioned this to her doctor, so he has ordered a sleep study on her to see if her oxygen level drops at night when she is lying down. We are awaiting her results.

There is no known relationship with oxygen or blood oxygen levels and RLS. I doubt the sleep study will shed any further information on your mother's RLS problem.

Iron deficiency anemia (which is what your mother developed from her bleeding ulcers) has been associated with worsening RLS and getting a blood transfusion may help.

I was wondering if you have experience with ladies in their 50's whose symptoms have gotten worse as they have gotten closer to menopause? I have noticed "changes" in the last 3 months and symptoms have gotten worse, so was wondering about any advice on this subject.

It is not unusual for symptoms to change with hormones (such as before menstrual flow). Typically, menopause may make RLS worse or better. Prior to the recently noted problems with estrogen therapy, we would simply start hormone replacement therapy but now we are much more reticent to do so (unless the menopausal symptoms are very severe).

Sent: Thursday, January 03, 2008 2:51 PM
Subject: RLS prickly sensations all over body

I read PAA's posting July 2nd about having this uncomfortable, prickly sensations all over his body that has come after taking Requip for awhile. I too have had that happen to me and I've been struggling with it for six years. It's like my whole body has become extremely sensitive and prickly with a burning in my upper back. I never had any of these sensations until I started taking Mirapex. After about six month it seems my body just started going nuts. Prickly sensations all over my body, my upper back burning like it's sunburned, just an overall sensitivity to touch that I had never experienced before.

I am a 45 year old male, in great shape. I train daily, eat well, don't drink, former professional athlete. I am a perfect case study because I am absolutely healthy in every other way. I've had RLS since I can remember and, like many people, had no idea until I was about 35 that it was a condition called RLS. I started to take Mirapex, .25 mg at night and it was like a miracle! It worked perfectly and completely calmed my legs at night and I was cured! Well, after about six months, all of a sudden I was so uncomfortable with these new issues, I could barely put my clothes on and be comfortable. But, like RLS these new sensations improved with activity, mind engagement, and hot baths. So, I knew this was RLS related and not just a bad reaction to Mirapex as a medicine. Since I've had these sensations for six years now, I can tell they are related to my RLS.

As I've learned more about RLS, I think I've experienced augmentation with the Mirapex. What's odd is that I still can take after six years, .250mg of Mirapex and my legs are completely still at night. I now have these new symptoms that I struggle with. After six years of dealing with this, I just do not know what to do.

Does this sound like augmentation to you or just a worsening of my RLS over time? It seems odd that these new prickly sensations started just months after I started taking Mirapex and I've never heard of these kind of symptoms before until I read PAA's posting on July 2nd.

Right now I still take .25 mg of Mirapex at night I use 300mg of Neurontin four times a day plus 5 mg of Methadone twice a day to help with my new symptoms. I feel like I need a new direction. If the Mirapex is causing augmentation should I stop taking it at night? If so, what should I take at night? I desperately need to try and figure out a game plan to reduce these new symptoms! Man, am I uncomfortable. I've tried Lyrica. It didn't work as well as Neurontin for the prickly sensations.

I'm willing to try any new idea/medicine or program that can help me. I am tired of being so uncomfortable all of the time!

DNL

Augmentation has been better defined (by a task force) in the last year or so. The hallmark of augmentation is earlier onset of RLS symptoms, spread to other body parts and an increase in intensity in symptoms all related to starting a dopamine drug in the previous 1-18 months. When these symptoms occur after 2 years on a drug they are generally considered to be just worsening of the disease.

However, there are always exceptions to the rules so it is possible that you may have RLS (especially as your prickly sensations started not long after starting Mirapex). Although your prickly sensation is not typical of RLS (most sufferers have some atypical features/sensations anyway), they may easily be manifestations of augmentation.

The way to decide this issue is to stop the Mirapex. You will need to increase your methadone (as high as 5-10 mg three times daily but don't do this without the approval of your own doctor) for a week or so. After about 2 weeks, if your symptoms are due to augmentation, you should notice a marked reduction in those augmentation symptoms and be able to decrease your methadone intake considerably.

It sounds as if you may be experiencing augmentation from Requip. Changing to Mirapex may improve the situation but the augmentation could still become a problem.

To switch, you need to take an equivalent dose of Mirapex to replace the Requip. Generally, Mirapex is at least twice as potent on a mg to mg basis. Therefore, .125 mg to .25 mg of Mirapex should replace .5 mg of Requip. This varies with each individual so you may need a little trial and error (starting on the low side for safety). You may also need some painkillers (like Vicodin) to supplement the Mirapex until you get your RLS symptoms under total control.

Sent: Monday, January 07, 2008 8:54 PM
Subject: RLS Question

I am 37 and have very severe RLS in my arms and legs. I have tried Mirapex and Requip as well as many other non-medicinal therapies and treatments. My symptoms have become much worse over the last few years since I started trying Mirapex / Requip. Mirapex worked well for a short time when I started taking it but as I increased my dose, I had very unpleasant side effects like nausea and a very uncomfortable feeling. I am educating my doctor on this and he is open to trying things, but does not know much about treatments and dosages.

I stopped taking Mirapex after I was accidentally prescribed a 1 mg tablet instead of .125 and I took one and was frightfully sick and in bed for two days. Requip has not worked for me but I have not taken it in doses of more than . 5 mg as it gives me the same strange feeling as Mirapex and doesn't seem to do much.

I am now taking a sleeping pill called Zopiclone (I am in Canada) and take 5-10 mg. This helped as well for a short time but is losing it's effect.
My symptoms are severe (33 out of a possible 40 on the IRLS rating scale if that adds perspective) but I can usually get through the night and maintain my sanity. Fortunately my wife is a sound sleeper or my marriage would have been finished long ago.

I need to find something that works for me, and I would like to talk to my doctor about opiates (hydrocodone, oxycodone, methadone), but I don't know what to take or what dosage, and if with the severity of my case this is a viable long term solution. Are these drugs likely to affect my mental state as well during the day?

What is a reasonable treatment course if dopamine agonists are not helping (and may be making things worse)?

Steve W.

Opioids may be considered when the dopamine agonists have failed and the RLS symptoms are severe enough (at least over 15 on the IRLS rating scale and definitely over 20) which sound like you. Most patients do well with opioids with little if any effect on their mental processes (however this can vary considerably, so you must try them yourself to find out). The opioids, when used correctly in low dose for RLS are typically very safe and effective even for long term use (years to decades).

The correct dose for the opioids are the lowest dose that controls symptoms. You can use my RLS Treatment Page as a guide. Anticonvulsants (gabapentin, Lyrica) may also be considered but sedation is often a concern when they are used in the daytime.

Sent: Tuesday, January 08, 2008 11:56 AM
Subject: RLS Help!!!

I am a 37-year-old female and have been dealing with RLS for as long as I can remember. It has gotten much worse lately, and I just went to the doctor for some help. In the past I've taken Xanax, Trazodone, Elavil, OxyContin, Vicodin, Neurontin, and many other meds. I've been on nothing for the last few months due to financial issues and I haven't been able to go to the doctor I feel like I just wasted what little funds I did have.

I've been up for 4 nights straight with one of the most severe episodes I've ever had to deal with. I went to the doctor and was given Ambien and Requip. Frankly, I am afraid to take Requip, and I can't really afford it. I mentioned your website, as well as advice from it. I'm so tired of being looked at like a druggie when I mention that Xanax works well for me, Vicodin helps for breakthrough pain, and that I'm interested in trying the Methadone, which so many people seem to be having good luck with. It seems that the more knowledgeable I am about the drugs, the more I seem like a "drug seeker". I'm at the "crazy" point where I'm thinking, "If I crash my car into this truck, they will take me to the hospital, they will medicate me, and I will sleep!" I would never actually do this, but this is how desperate I've become.

I am on a very limited income, with no insurance. I don't know what to do, because I can't just keep hopping from one doctor to another. Do you have any suggestions? Anything I might say to my doctor?

Lisa S.

We don't mind using methadone, but only after Requip and Mirapex have been tried and failed. GSK has a program for those who cannot afford Requip and will supply it to you for free. Check with your doctor about getting set up with this drug program.

If the above drugs do not work for you, then methadone would be a very reasonable alternative. You could show your doctor these emails and perhaps bring him a copy of my book which explains this treatment in more detail.

Sent: Tuesday, January 08, 2008 5:22 PM
Subject: Mirapex for painful RLS symptoms?

I would like to ask for some advice regarding my use of Mirapex for my RLS treatment. I have been using Mirapex twice daily now for almost 3 yrs with much success. I stopped once thinking my use of fentanyl for a failed spinal fusion would also be helpful with my painful RLS symptoms. However, after missing only a few doses my RLS problems returned.

Just recently I have been awakened again with my RLS symptoms after using my regular dosage of .25 @ 3 pm and .375@ 8 pm for almost 3 years. Could you pass along some advice as to my recurrence of RLS problems (i.e.: tolerance etc.) I have also been using 50 mg fentanyl every 48 hrs for back pain for 2 years now also. The RLS problems have been occurring on the 2nd night of my fentanyl dosage if that is of any importance.

Bill in Maryland

The fentanyl patch generally lasts for 3 days but it is certainly possible that you are experiencing some fallout from lowering fentanyl doses as the cause of your worsening RLS. It is difficult to blame your problems on tolerance (due to other drugs on board that confuse this issue) but it is more likely that your RLS may just be naturally worsening or not adequately treated on the second day of your fentanyl patch.

Sent: Wednesday, January 09, 2008 6:49 PM
Subject: Requip and homocysteine levels?

I have been on Requip for about 6 months with much improved symptoms. Recently I was told that I have a very elevated homocysteine level. One site stated that drugs categorized as levodopa could possibly cause the above mentioned problem. I contacted my pharmacist and was told Requip is not a levodopa.

My mother passed away at my age (44) with a massive brain stem stroke and was as healthy as could be, except she was a smoker. I have never smoked, not overweight (135 and 5 foot 5 inches tall) I also exercise. It's possible that this level is genetic. I have a specialist appointment is in 2 weeks. Is it possible that Requip could cause an elevated homocysteine level?

Glori M.

Requip is not a levodopa type of drug. However, it acts on the dopamine receptors while levodopa gets converted to dopamine which then acts on the same dopamine receptors. I do not have any information that Requip (or other dopamine agonist drugs) affect homocysteine levels so it is very likely that your problem is genetically based.

Sent: Friday, January 11, 2008 7:59 AM
Subject: RLS Transition to Sinemet

I was put on Requip starting in January 2007 for moderate to severe restless legs. At the time I was also taking Paxil CR (37.5 mg/day) and Wellbutrin SR (150 mg/day). I noticed that I gained about 8 pounds over a six month period and then my weight gain leveled off. I got off of Wellbutrin and my weight shot up again another 3-4 pounds in about 2 weeks.

I have been back to my doctor, who took me off of Requip (1.5 – 2 mg/day) and put me on Sinemet, starting at 25/100 mg/3xday dose for a week and then increasing to 2-25/100 mg/3xday dose. Since getting off of the Requip two days ago, I have had virtually no sleep due to the RLS symptoms worsening. Is this normal during the transition? If so, how long does this normally last?

M.E.S.

If the Sinemet dose was adequate (similar in potency to Requip), then the transition would be very smooth. However, rather than increasing the Sinemet to obtain a dose similar to your Requip, I would strongly suggest that you abandon the use of Sinemet.

At doses greater than one 25/100 mg tablet per day, this drug will cause severe problems with augmentation that will make you wish that you never even heard of Sinemet. It is much better to take the dopamine agonists (Requip, Mirapex or Neupro) for RLS or consider other classes of medication if they are not tolerated or helpful.

I was having such bad RLS with the Sinemet, that I have gone back on Requip and am looking at other options.

M.E.S.

I know I've seen this topic somewhere, but can't find it right now. Do you have any patients who have worsening RLS when taking oral contraceptives?

Linda
Lakeport, CA

Some patients worsen on birth control pills while others may improve (or experience no change at all). It is hard to predict until you try the medication and you may have very different experiences with different pills.

Sent: Monday, January 14, 2008 4:05 PM
Subject: Wellbutrin withdrawal causing RLS?

Since I reduced my Wellbutrin from 150 to 100mg SR about 3 weeks ago, I've noticed an increasing worsening of my RLS, which is distressing me greatly. I know that Wellbutrin has some dopamine agonist effects, so could this reduction cause the increase in symptoms?

I also started oral contraceptives about 2 weeks ago, so I am wondering if this could be the culprit. I stopped it 2 nights ago, and had a good day yesterday, but a horrible one today. would it take longer for the hormones to clear my system.

Linda
Lakeport, CA

Wellbutrin does increase dopamine levels mildly and this effect may be sufficient to help some RLS sufferers (likely a distinct minority). Therefore, it is possible that stopping the Wellbutrin may have triggered your RLS, although the drop in dose is quite small making this less likely.

Hormones do take a few days to clear but it is less clear how quickly their good or bad effects last on RLS.

Sent: Sunday, January 13, 2008 3:50 AM
Subject: Requip for bad RLS?

I have recently been taken off Mirapex that I have used for four years (it had started to augment) and was started on a very low dose of Requip. The Requip did not touch my symptoms, and after almost 48 hours of no sleep, and constant movement, my husband took me to the ER. There they tried IV valium and Norflex to start - it helped for about 10 minutes, then my legs went absolutely nuts.

After more valium (oral this time) Neurontin (oral), they finally gave me morphine and this did the trick. I came home and slept very well. During the next day when I would feel something coming on, I would take prescribed Klonopin (I think that's the right spelling), and then before bed I took Requip .5mg and a Lortab. I slept well, but it is 4:45 am and I'm up because my right leg is causing me fits.

I know that some people take their RLS meds throughout the day and then at bedtime - is this feasible with Requip? How long before the Requip kicks in? I certainly don't want to continue the Klonopin and Lortab indefinitely, I live in a small Wyoming town, and the doctors are quite frank about not being all that familiar with RLS.

Klonopin does not help most patient's RLS symptoms but rather helps you fall asleep despite the bothersome symptoms (it is similar to the Valium that you were given IV that did not help). It also has a long half-life so is not recommended for RLS or other sleep-related problems.

The Requip is about 1/4 to 1/2 as strong as Mirapex so it may take a lot more to take care of your symptoms. The drug can be taken up to three times daily (despite it only being approved once daily for RLS use) when necessary. However, there is a significant risk that you may develop augmentation with the Requip as you did to the very similar Mirapex.

Your best bet is to continue with adequate doses of Neurontin (100-900 mg up to 3 times daily) and Lortab (although the opioids oxycodone or methadone work better but may be more difficult to get your Wyoming doctors to prescribe) as needed. At low doses, the opioids are very safe and effective even when used daily.

Sent: Monday, January 14, 2008 10:51 AM
Subject: MIRAPEX AND AMBIEN CR

I was recently put on Mirapex and I take Ambien CR as well. Within the last week, I have began to feel weepy, my arms are like lead, I just feel terrible. I have been to the doctor and had lab done. I am anemic and they said my Vitamin D level was very low. Could the Mirapex and Ambien CR combined have an effect on me as far as the weepiness and bad feeling?

Dana

Anything is possible but that would be a very unusual reaction from either or both of those drugs (taken separately or together). Mirapex and Ambien CR are often prescribed together as RLS patients develop chronic insomnia frequently.

Sent: Monday, January 14, 2008 11:41 AM
Subject: Age of onset for RLS?

I just found this website...I was looking through the comments and physician responses, does anyone know if there is an average age group that this effects? I have only seen comments from people in their 50's or older, I am 26. I can't find any relief from this, although I haven't seen a doctor for it. It began while I was pregnant with my second child (she was born in April of last year).

My doctor at the time said there was nothing they could do while I was pregnant, but now it doesn't happen as often, so I have a hard time justifying the bills it would create to be seen for it now. As you all know, this is so horrible when it does happen, I wonder if there are any home remedies for it?

About 20-30% of RLS sufferers develop their first symptoms before the age of 21 (especially those with a family history of RLS). However, it often takes decades for the disease to get bad enough to warrant discussing their RLS with a doctor so the average age of diagnosis is about 40-60. Women typically get RLS symptoms with pregnancy with worsening after each subsequent pregnancy.

It should not require a lot of expense to see a doctor and get your RLS treated. For intermittent symptoms, generic, inexpensive drugs such as Sinemet or Vicodin can be used extremely safely and effectively to relieve your problems on an as needed basis.

There are home remedies (see the books by Jill Gunzel and RLS:Coping with your sleepless nights on our website) but they do not help everyone and are generally not as effective as treatment with medication.

Sent: Tuesday, January 15, 2008 8:19 AM
Subject: Restless leg syndrome and disability?

I was just told by my specialist that I have severe RLS. I am wondering if this condition is considered a disability?
It is just about making my life so miserable, I spend most of my days and night in a recliner or in bed.

Patient's with RLS have received disability when it prevents them from working. It is typically more difficult to get disability due to RLS as most people and administrators are not familiar with the disorder. However, with proper preparation, appropriate RLS cases should eventually receive disability payments.

Sent: Tuesday, January 15, 2008 9:15 AM
Subject: alternate to Mirapex

My RLS started over 27 years ago when I was pregnant with my first child. I am now 52 and in menopause. The symptoms have worsened to the point I am now on Mirapex. At first I thought it a miracle the way it stopped the pain and movement. However, the weight gain and food seeking is very distressing.

Is there any other type of drug available that is not going to work on the reward centers yet allow me to fall asleep. I already have reduced my salt to 200-300 mg per meal, take magnesium and exercise regularly.

Susan,
Pickering, Ontario, Canada

You could try Requip (a less potent cousin of Mirapex) but there is a chance that it may cause the same problems. Your other choices include anticonvulsants (Neurontin or Lyrica) or painkillers (opioids or tramadol). These non-dopamine drugs do not cause food seeking behavior.

Sent: Tuesday, January 15, 2008 1:53 PM
Subject: RE: I'd love to sleep all night long!!

You have given me very good advice in the past, and I'd like to ask your advice once again.

I have RLS pretty much 24/7. I take 2mg Requip spread throughout the day. .25 mg at 10am, .25 mg at 2pm; .5 mg at 6 pm; .5mg at 10 pm; and save the last .5 mg for during the night when I sometimes just take .25 mg. I also have codeine 15 mg and I take one of these at 10 pm, and also occasionally before going to the movies or some situation where I can't be mobile.

Sleep, and in particular staying asleep was a big problem, and my GP gave me temazepam 10mg. I have been using it for 2 months. This helped a lot, it did not give me a full night's sleep, but when I do wake up, often 3 or 4 times, I can generally get back to sleep. I do not walk the floors to the extent that I used to.

Today my doctor asked me how I was doing with the temazepam and I explained that I still woke up 3 or 4 times during the night. He suggested that I try zolpidem and has given me a prescription for this. My question is that I understand temazepam is longer acting, and if it did not keep me sleeping, how will the zolpidem which I believe has a shorter life of 2 - 3 hours. I know in your book you recommend Ambien (zolpidem) so I would be grateful for your views.

Betty

Temazepam (Restoril) does have a much longer half-life (9.5 to 12.5 hours) compared to zolpidem (Ambien) which is has a half-life of 2.5 hours. However, we all respond differently to medications so this can vary quite a bit from patient to patient as the numbers quoted are averages. Furthermore, the low dose of temazepam of 10 mg may not be sufficient to sustain sleep as long as the higher doses (30 mg is the maximum).

Temazepam and other benzodiazepines do have a significant risk of tolerance when taken on a regular basis which does not occur with zolpidem. If one drug does not work as advertised, then you should try another (such as Lunesta which has a longer half-life of 6 hours).

Sent: Thursday, January 17, 2008 2:59 AM
Subject: RLS???

I was diagnosed with severe RLS about 7 years ago. I am now taking .5 mg. of Mirapex about 8:00 P.M. The discomfort I have it mostly in my lower abdomen with intermittent jabbing-like severe pain which occurs about every 20-40 seconds when it acts up. The pain also can happen in my knees. I don't have any creepy, crawling-like or tingling sensations. In your opinion, do you really think this is severe RLS?

I am totally perplexed. The Mirapex seems to help enough for me to get some hours of sleep/night although I've been waking up about 4:00 A.M. with the same lower abdomen intermittent jabbing-like intense pain. Is this rebound from the Mirapex?

The pain can occur anytime during the day also-not as much as towards evening and when I wake up at night.

Abdominal discomfort can occur with severe RLS. Typically, the RLS must first occur in the legs then can spread to other body parts such as the abdomen.

To tell whether your abdominal pain is part of your RLS, your symptoms should improve with movement, be worse at rest and you should have the urge to move while experiencing the discomfort.

If your abdominal symptoms are due to RLS, you should be able to relieve them by taking your Mirapex later in the evening (Mirapex generally last 6-8 hours so if you take it after 10 pm, it should eliminate the 4 am problem). If you need some Mirapex to get through the evening, discuss taking a split dose (some at 7-8 pm and some before bedtime) with your doctor.

Sent: Friday, January 18, 2008 2:12 AM
Subject: Re: RLS???

Thanks so much for your informative E-mail and advice regarding the severe RLS I have and taking the Mirapex at 10:00 P.M. and splitting the dose and taking that portion between 7-8 P.M.

My RLS is indeed relieved by movement when I get up and walk around so it must be severe RLS in my abdomen. I can recall when it was in my legs when I just began to have it.

It does sound as if your abdominal symptoms are RLS related. Let us know how splitting the Mirapex dose works for you.

Sent: Friday, January 18, 2008 7:32 AM
Subject: Unilateral RLS?

I suppose that most people with RLS report problems with both legs. For many years I have only had my left leg involved. X-rays for back pain several years ago showed that I have occult spina bifida and mild scoliosis. All my lower back, buttock and thigh pain is on the left. When I am tired my left leg drives me crazy with restless symptoms. Magnesium seems to help. I haven't used any other meds for it. I figure I must have some spinal stenosis that is creating a problem on the left side. How common is this?

Sara M.
Lenoir, NC

Although a majority of RLS patients experience symptoms more in one leg than the other (this can change during the day, from day to day or even by the week or month), it is more unusual to have symptoms only in one leg. However, a small minority of patients do report that symptoms occur only in one leg or on one side of their body. We do not have any explanation for this phenomenon.

Sent: Friday, January 18, 2008 8:07 AM
Subject: Possible appropriate meds for mild RLS

I was diagnosed with metastatic breast cancer last summer, and for the next 2 months took 15 mg MS Contin, 3 x daily, then dose was increased to 30 mg 3x daily. Since early December, I have been in remission (they see disease---it is not active). When I told my oncologist I wanted to wean myself off the MS Contin, he said to do so slowly, which I did.

He gave me Percocet (5/325) for pain. I now have mild to medium level RLS symptoms, and at bedtime, take 2 OTC melatonin, 2 Percocet, a small amount of GABA. Warm packs help relax my legs—at least until I can fall asleep. Is Mirapex appropriate for this type of RLS? I have a friend who has suffered from intense RLS for 30 years---she has taken Mirapex for quite some time and gets good results. It gets great results. The only other med I take is Tamoxifen.

Pam

Mirapex (or the other approved dopamine agonist, Requip) is very appropriate for all types of RLS. This may help you further reduce your need for Percocet.

Sent: Saturday, January 19, 2008 6:43 PM
Subject: Lyrica for RLS?

I have written several times before this and you have helped me a lot but now I am having problems again I am taking .5mg of Mirapex 3 times a day - 1 at noon, 1 at 5:oo and 1 at 10:00 along with 2 of the 300 mg of Neurontin at bedtime. My RLS has been bothering me a lot during the day and at night finally get to sleep and sleep for a couple of hours, wake and walk a hour or two and from them I wake about every hour and am awake for an hour or two with my leg. My family doctor is thinking about trying me on Lyrica.

Should I continue to take Mirapex and Neurontin if he does try Lyrica? He works with me really well. I really appreciate all the help you have given me. I have your book and also your tape.

Lyrica is an anticonvulsant medication and thus works similar to Neurontin. If you start on Lyrica, you should stop the Neurontin.

Sent: Sunday, January 20, 2008 8:20 AM
Subject: Severe Bite Reflex with Mirapex?

For some years I have been taking a combination of Tramadol (25-50 mg/day) and Mirapex as needed (.125 mg). This has worked pretty well taking the Tramadol almost every day and taking the Mirapex only occasionally when needed. A few months ago, my doctor of many years retired and I haven't yet found one to replace her that I like. Meanwhile my Tramadol Rx ran out and have not been taking that for a few weeks.

What I found out is that I had withdrawal symptoms from the Tramadol that lasted about 2 weeks that were pretty unpleasant. After that, I thought I would stop the Tramadol as it seems to be addictive and don't like the idea of taking something that has that potential. So now it's just been the Mirapex every night at .125 mg. Well, it does take care of the RLS just fine. But on it's own I've seen these bad side effects that I never noticed taking it with the Tramadol.

I wake up very groggy and sleepy no matter how much sleep I've had. It takes hours to wear off and is really hard to take since I have to be at work at 7:30 every morning. The other side effect which is much scarier is that I have begun having severe jaw spasms in my sleep. My jaw suddenly snaps shut very hard and I bite my tongue - HARD - enough to make it bleed. Of course I wake up violently screaming in pain. This happens only when I'm asleep, either napping during the day or sleeping at night, and is now happening almost daily.

Now I'm afraid to even fall asleep knowing this is coming while I'm unconscious. I think this must be a side effect of the Mirapex. Strange how it can quiet the spasms in my legs, but create others in my jaw. And why only when I'm asleep? Do you think this could be because of the Mirapex - being taken without the Tramadol? I hate to start the Tramadol again, but I will if I have to. I can't live with this involuntary bite reflex happening when I sleep.

Have you seen this with the Mirapex - this form of dyskinesia? Why do you think it only happens when I'm asleep - this violent bite reflex?

Kellye C.

I have never seen or heard of this side effect from Mirapex when used for RLS (tardive dyskinesia does occur in Parkinson's disease patients however these are slow jaw movements). It does sound as if the Mirapex is causing this problem and you can prove it easily by not taking Mirapex for a few days (you can use tramadol alone) and see if the problem still occurs. Often problems can occur only during sleep as muscles are being stimulated by their nerves much less while you are asleep (that is why sleep apnea only occurs during sleep).

You may consider trying Requip instead of Mirapex. However, Requip is also a dopamine agonist so there is a possibility that it may also cause this strange side effect.

Your withdrawal symptoms from tramadol have nothing to do with addiction or tolerance. I am not sure why you any withdrawal symptoms (maybe they occurred due to inadequately treated RLS?) from such a low dose of tramadol (normally it takes doses of much greater than 400-600 mg per day) but since you did not have any tolerance (a need for higher doses to get the same drug effect), addiction should not be one of your concerns.

Sent: Sunday, January 20, 2008 11:41 PM
Subject: RLS with Parkinson's disease?

My doctor had been treating me for Essential Tremor since Nov. of 2003. I since have gone to a specialist and was diagnosed with Parkinson's disease. I was taking Mirapex .5mg 3x as part of my treatment, but my specialist has taken me off of it and increased my dosage of Sinemet from 1 of the 25/250 mg to 1.5 of the 25/250 mg. The day I quit taking Mirapex which was 1/16/08, RLS raised it’s ugly head and I have been dealing with it since.

The Mirapex made me sleep like a rock but I was up about 5 am or earlier sometimes. Now I either have trouble getting to sleep because of the RLS or I wake up 2 or 3 hours in with RLS. I guess my question is will increasing the Sinemet have an effect on the RLS or will I probably have to restart the Mirapex? I also take Inderal LA for the Parkinson's.

RLS is actually more common in Parkinson's disease than in the normal population (possibly as high as 20% compared to 10%). It is likely that taking you off Mirapex (which may have been treating your RLS) revealed that you indeed had RLS in addition to your Parkinson's disease.

Increasing the Sinemet may temporarily help the RLS but will likely result in augmentation (although this is not as clear in those with PD and RLS). It is likely better to go with Mirapex and Sinemet.

Sent: Tuesday, January 22, 2008 7:32 PM
Subject: RLS and back injury

I am scheduled for an epidural on my back this Friday to find out if my back problems are aggravating and or causing the RLS symptoms. Is it possible that the RLS symptoms I have had for the past 15 years could be caused by the nerve damage in my bad back? I have taken many different Parkinson related drugs and I am now taking Requip each night which works pretty well.

My problem has gotten much worse in the last 6 months as had my back pain so I am following the orthopedic surgeon’s recommendation to see if this has a positive effect. Would these Parkinson drugs be helping me if it was in fact just nerve damage in my back causing these symptoms?

Since we don't know the exact cause of RLS, I cannot say for sure that your back/nerve problem is not the source of your RLS discomfort but it is very unlikely. What is much more likely is that the back pain has indirectly worsened your RLS. It is actually very common for trauma or pain to the body (especially back) to worsen existing RLS symptoms. This mechanism is not understood but unlikely due to nerve damage.

The Parkinson's disease drugs will help no matter the cause of your RLS but as stated above your RLS sensations are most probably only indirectly related to your back problem.

Improving your back pain may help your RLS but you will not know for sure until after your upcoming trial of the epidural.

Sent: Wednesday, January 23, 2008 7:45 AM
Subject: RLS and Pregnancy?

I read your entire site and all of the postings from various people with different lifestyles of different ages who suffer from RLS but I did not see a posting from anyone who was pregnant. I am nearing the end of the second trimester of pregnancy at 27 weeks pregnant. This will be my fourth child. I am 27 years old. My children are 4, 5 and 6 years old and while I suffered faintly from RLS symptoms before, during and in between each of my pregnancies with them, I have never suffered so much as I am with this pregnancy.

As a child I too experienced on and off RLS type symptoms but have never been "diagnosed" as having RLS. In my early 20's is when I noticed it getting increasingly worse. It has fluctuated anywhere from mild leg discomfort a couple of times a month to terrible pains in my legs, arms and often upper back. This is when it is the worst and its almost like I get so mad that it wont go away I jerk my body or whatever part may being annoying me at that minute in kind of a frustrating annoyed way hoping that just one more jerk will make it stop (like the 500+ I already tried really did any good anyways.)

I am sleeping maybe a total of 3 hours a night and that's on a good night. I often get up 2-3 times to take a warm bath and sit in the bathtub hoping the hot water will relieve my symptoms, or burn my legs off whatever will make that feeling go away first. Its primarily in my legs (calf going up to thighs) but often happens in my arms, which in turn I think may be affecting my upper back (the muscles right in between my spine and shoulder blades on both sides.) I don't experience these awful sensations very often during the middle of the day or even as I am going to sleep but about an hour to two after I fall asleep I am awakened by the annoying, frustrating feeling.

I asked my OBGYN for something to help me sleep and he seemed to look at me as if I were a drug addict. He told me to use Tylenol PM, Unisom or Benadryl to help me get a good nights rest. While Tylenol PM and Unisom have helped a bit in the past, on the nights that I am experiencing the severe pains they do nothing but seem to aggravate the condition.

I am in the process of switching OBGYN's because of his lack of interest in the problem. With 3 small children at home who I care for all day long while my husband is at work and being 27 weeks pregnant I am beginning to feel like I am floating around my house in a daze and I am not able to function very well. I am so sleep deprived most of the time I do get even 3 hours of sleep I still get out of bed and "up for the day" around 4am because even though I am exhausted I would rather feel exhausted than feel that nasty feeling of being unable to control what is going on with my legs and arms.

Is there any medications that are "safe" to take while pregnant? I have researched a lot on the internet and just about everything is a Class "C" or higher. With the exception of Ambien which was a Class "B". My neighbor takes Ambien to sleep and she took it also while she was pregnant with her last 3 pregnancies but she didn't have any of the RLS symptoms that I am experiencing. Would Ambien work for RLS or would it just knock me out for a few hours and then I would wake up with the RLS symptoms? I know that medication should be taken cautiously while pregnant but at this point I am wondering if the "benefit" of getting some sleep would out weigh the "risk" of not. Any help with RLS, Pregnancy and Medication to treat you can provide would be awesome.

Nichole
SLC, Utah

If you use our search engine on our homepage, you will find many letters on pregnancy and RLS (including our most current page 79).

Tylenol PM, Unisom and Benadryl are all antihistamines that worsen RLS and should be avoided (you can download our RLS medical alert for free from our homepage and give one to each of your doctors).

Ambien is category B (although the newer Ambien CR is categorized as C due to the newer tougher rating standards) and may help you sleep. Treating RLS with a sleeping pill is similar to treating back pain (that prevents you from sleeping) with a sleeping pill. If the problem is not that severe, the sleeping pill may help (once you are asleep, you can't suffer from back pain or RLS).

Unfortunately, the only medications that are category B and do help RLS are the potent opioids, methadone and oxycodone. These drugs should only be used when absolutely necessary (RLS that is bad enough to warrant this extreme treatment). They are fairly safe (if used correctly) and extremely effective for RLS but most doctors will likely not have enough experience with RLS and pregnancy to prescribe them to you.

Sent: Thursday, January 24, 2008 12:48 PM
Subject: RLS / Fibromyalgia

Just wanted to point out after reading some of the letters is that about 30% of people with Fibromyalgia, also have RLS. Some of the letters relating sore muscles or itching are classic Fibromyalgia symptoms. Seeking help for Fibromyalgia (guaifessein) or other treatments may help.

Jeff

We have definitely noticed a link between RLS and fibromyalgia. The reason for this remains unknown although sleep deprived patients may be more prone to suffer from fibromyalgia.

Current treatments for fibromyalgia that have been proven to work (by FDA approved standards and double blind scientific studies) so far only include Lyrica. This drug also helps many RLS sufferers but that may be due a totally different mechanism.

More research is clearly needed on this topic.

Sent: Friday, January 25, 2008 2:39 PM
Subject: NO MORE RLS.........

Free at last , I am free at last!!!!!!

For almost 20 years I have had violent attacks of RLS and tried everything anyone told me . Recently I was hospitalized for imbalance of various organs and was given a ton of new meds. in e few days my legs were calm and peaceful. I dared not hope for it to last but each day got better. Now which one or a combination of what drugs were doing the job?

I narrowed it down to simply a large dose of iron for anemia. It's still working and I never would believe that something so simple could overcome those violent seizures. Try it , what can you lose?

Iron therapy has been known to help RLS. However, this should be monitored closely as elevated iron levels can cause organ damage (called hemochromatosis).

Sent: Saturday, January 26, 2008 5:54 PM
Subject: Low ferritin causes with RLS?

I have low ferritin (14) but am not anemic. I have severe RLS but am pretty successfully treated for it. I'm starting supplemental iron to get my ferritin levels up. My question is: is there a need for me to investigate (tests) a reason for the low ferritin? I know it could be caused by gastrointestinal bleeding, etc., but I always thought that my borderline low ferritin levels were because I have the RLS, and my body does not absorb, metabolize, and store iron correctly.

So, can RLS explain the low ferritin? Or, does the low ferritin explain the RLS? I have taken iron supplements before successfully, but raising the ferritin level did not make the RLS symptoms go away, and I still needed a medication to directly treat the RLS.

Low serum or iron levels should always be investigated as they may be due to blood loss (painless bleeding ulcer, cancer of the stomach or bowel, etc.). It is possible that RLS does cause low iron levels (several researchers are exploring this issue) but this issue is currently not well understood.

Most RLS experts believe that the low serum ferritin levels cause/worsen RLS but it is possible that there is a genetic link between not being able to maintain iron levels and RLS (but this mechanism is not at all understood at this time).

Sent: Sunday, January 27, 2008 1:00 PM
Subject: mixing it up

This is a great forum, perhaps the most informative of any disorder of any kind.

I am an RLS'r with about 15 years under my belt of jimmy-legs. I use Requip, normally either .5 or 1.0 every night, and this works well, except I am finding that after about 12 months of using, it seems to take longer for it to become effective. Sometimes as much as 2.5 hours. I am wondering, would it be good for me to ask the doctor for Mirapex (or other), simply to "1 month on, 1 month off" between the two of them to keep the tolerance issue down?

Also, unrelated to drugs, is there any success stories from anyone using simple leg/back massagers to emulate movement and perhaps "trick" your legs into submission? Always looking for a way to beat this curse.

Tolerance to a drug occurs when a higher dose of the drug is needed to obtain the same effect. Simply taking longer for the drug to onset is not tolerance (and I don't think that there is a term for this phenomenon). I would simply take the Requip a little earlier and see if it works as well.
Switching to Mirapex should not help in this situation as it takes longer to kick in than Requip.

Some patients (usually those with milder disease/symptoms) do get benefit from leg message (or other physical measures) and may avoid the need for drugs. Whether this has anything to do with tricking your legs into submission is mere speculation (we simply have no clue why this works).

Sent: Monday, January 28, 2008 10:49 AM
Subject: RLS symptoms

I can’t tell you how grateful I am for the information on this website! You’re generosity in taking the time to answer these questions is…well, mind-boggling! You are helping out a lot of desperate people!

I’m a 43 year old male, otherwise in great physical shape/health (aside from a fluky transurethral resection of a bladder tumor last October) who over the past year or two has experienced episodic (once every 3-4 months) RLS symptoms in my legs that interrupted my sleep. A few weeks ago (1/3/08), I was awaken in the middle of the night with RLS symptoms in my legs. The following morning, the agitation persisted (it was as if I’d O.D’.ed on caffeine) and the RLS symptoms had spread to my arms and shoulders. I made an appointment with my internist/PCP, who knew nothing about RLS, ordered up some blood tests (no iron) and referred me to a neurologist. I called around to various neurologists in the area (western MA), and the earliest I could make an appointment was for Mar 4. The blood tests came back normal.

My symptoms have continued to progress since that appointment and I hit the web l desperate for info and relief. I cut caffeine, to which I have always been sensitive, and alcohol (previously 2-3 glasses of wine with dinner) out of my diet and ratcheted up my exercise regime, which only temporarily relieved my symptoms and helped to clear my head. Otherwise, the symptoms got worse. Particularly during the day. My problem is not so much in going to sleep—come 9 pm I am physically exhausted—but in staying asleep.

I read here and elsewhere that oxycodone is often prescribed to alleviate RLS symptoms and I remembered that I had been prescribed some Oxycodone/APAP 5mg/500mg after my bladder surgery. I hadn’t needed them after the surgery—Tylenol alone relieved the pain without the nausea of the oxycodone. Desperate, I took a 5 mg pill and my symptoms—both the limb restlessness and the general agitation—we’re moderated, if not completely resolved. Down from drinking an entire pot of coffee to 2 cups (unpleasant for me, but manageable). Over the past week, I’ve been taking 5mg oxycodone on an “as needed” basis—ie. when the symptoms are severe/intolerable. The most I’ve taken in a day has been 10 mg (2 pills, one at a time)). I’ve also occasionally taken 6.25 mg Ambien to help me get to back to sleep after I’ve woken up with symptoms.

I’ve made another appointment with my internist to help manage my symptoms until I get a formal diagnosis from a neurologist. I also gave her some RLS literature and persuaded her to run serum ferritin, total iron binding capacity (TIBC), and percent iron saturation (still waiting those results).

My questions:

1. Is my agitation—this feeling of having OD’ed on caffeine--consistent with RLS? Because this agitation sets in after waking and persists throughout the day, it appears somewhat inconsistent with what I read about classical RLS symptoms, which seem to be more severe at night for most people.

2. While the oxycodone is effective and—at 5 mg—allows me to function well enough during the day with only minimal feelings of nausea, I am concerned about the addictive properties of opiates. My father, a surgeon who has reviewed the RLS articles that I’ve sent him, suggested I ask my internist about Neurontin/gabapentin as an alternative. What would you rec’d? I’m anxious that my internist—who is clueless re RLS—will be reluctant to prescribe me an opiate.

Todd T.

1. Your agitation may still be RLS even though it occurs more during the day rather than in the evening. However, when you get that agitated feeling, you must have an irritable urge to move your legs when at rest and moving (walking) should give you some significant relief. It you meet these criteria, then you most likely have RLS.

2. Opioids such as oxycodone are very effective for RLS. However, they are reserved for those who do not benefit or tolerate the other RLS medications. The dopamine agonists (Requip or Mirapex) should be tried first as they are currently the drugs of choice for RLS. The anticonvulsants (Neurontin or Lyrica) are the next choices for treating RLS. If these fail, then opioids should be considered.

Sent: Tuesday, January 29, 2008 7:36 AM
Subject: RE: RLS symptoms

Indeed, the agitation and the irresistible impulse to move (arms, legs, shoulder, back) occur simultaneously. This morning I had blood drawn for the blood iron tests and have an appointment with my internist to discuss treatment options day after tomorrow.

The more I read about the dopamine agonists—particularly in the patient letters to you—the more alarmed I am by the side effects, augmentation, etc. Of course the people writing to you are those having trouble managing their symptoms, skewing the sample of RLS patients taking the drugs. The collective impression I get, though, is that many/most RLS sufferers on Requip or Mirapex develop problems, especially augmentation. Are the letters on rlshelp.org indicative of the broader population of RLS patients you treat? In your experience are the dopamine agonist well tolerated in the broader population? Or do most of your patients need to go off the drugs within a couple of years?

Perhaps because I’ve had severe RLS symptoms for less than a month, and because I wake up with moderate symptoms (2 out of 5 on my “cups of coffee” scale), there’s a part of me that is hoping that one day I’ll wake up and these symptoms will have resolved themselves altogether. I’ve been holding off taking oxycodone until I really need to, hoping that one day I won’t need to. Perhaps this is not the ideal way to manage RLS symptoms with opioids. But my thinking—perhaps flawed—goes: if I take them regularly—before onset of symptoms—I won’t know if my symptoms have spontaneously improved. Do you have a corrective for that type of thinking? Or let me pose that question another way: how do patients on dopamine agonist know they no longer need to take them?

Hence the logic that feeds into my reluctance to go on dopamine agonists that appear to profoundly affect brain chemistry and often (occasionally ??) make symptoms worse (augmentation), as opposed to temporarily mask the symptoms with low doses of opioids (or anticonvulsants).

Todd T.

You are correct in observing that there is a much higher proportion of people having adverse reactions to the dopamine agonists writing letters than those who are benefiting from these drugs. In the real world, the vast majority of RLS patients who take dopamine agonists do very well even in the long term with Mirapex and Requip.

However, there is a significant minority (we are still trying to figure out these numbers) who do have problems with the dopamine drugs. That does not mean that they should not be tried and that they are not still considered the drugs of choice for RLS (at least until newer drugs are developed).

It is much better to take the RLS drugs well before symptoms occur as it is much easier to prevent symptoms than to relieve active symptoms (often a lower dose is more effective when used prior to symptoms compared to even a higher dose while symptoms are already present). You can always test to see whether you need the medication by periodically withholding them....you will very quickly find out if you still need them.

Sent: Monday, January 28, 2008 6:47 PM
Subject: HELP for my RLS?

I am 44 years old ,having RLS and taking Sifrol (pramipexole or Mirapex ) 0.18 mg only few hours before bedtime which works for me by allowing me to have a nice sleep BUT it makes me feel so tired and sleepy at day time which really has negatively effected my job.

While searching the internet and the researches on RLS treatment, I have found that ropinirole ( is so far the best medicine as far as lesser side effects is concern. I need your help tin should I switch to ropinirole (Requip) and if so, from the side effect point of view , is it really better than Sifrol (Mirapex )?

Is there and permanent cure for RLS or we need just to continue with the medication for ever?

Abdulla,
Dubai, UAE

Ropinirole and pramipexole are similar in that they are both dopamine agonists that work on the dopamine receptors. However, despite this similarity, some do better on one drug than the other. As far as ropinirole being better than pramipexole, this is a very individual issue so you must try each drug to see which (if any) is better for you. Therefore, it is definitely worth trying ropinirole but it may be better or worse (only you can tell us after trying if it was worth it).

If the dopamine drugs don't work for you then the anticonvulsant drugs or painkillers (opioids or tramadol) may work for you.

Currently there is no permanent cure so you have to continue taking medication indefinitely but we are working on finding the real cause and possible real cure for RLS.

These products have never been proven (by appropriate scientific/medical research) to help RLS. They rely on "anecdotal testimonial" reports to prove that they work. It is most likely that any benefit from these products is due to the placebo response (sugar pills should be as effective, much safer and cheaper).

I would suggest you avoid any commercial advertised products as they have not been tested and demonstrated to be effective for RLS.

Sent: Wednesday, January 30, 2008 6:29 AM
Subject: Mirapex and Weight Gain?

I have had great success with Mirapex for about two years. I take two .5 mg tablets every night. However, it has come at a price. I have had significant weight gain during the period, about 30 pounds. Also I am tired all the time. I was wondering if research has shown any connection between weight gain with Mirapex?

I did read where you commented weight gain, usually water retention, can happen with Requip. While I don't like treating side effects with another medication, I am curious what my options are to deal with this weight gain if it is mainly water retention.

Weight gain has been noted with both Requip and Mirapex. However, most do not gain as much weight as you have done. Some of the weight may be due to water retention which could be treated with diuretics but I agree with you that it is not a wise idea to treat side effects of one medication with another drug.

The main option would be to change to another class of RLS medication (anticonvulsants or painkillers).

Sent: Tuesday, January 15, 2008 1:53 PM
Subject: I'd love to sleep all night long!!

You have given me very good advice in the past, and I'd like to ask your advice once again.

I have RLS pretty much 24/7. I take 2 mg Requip spread throughout the day. .25 mg at 10 am, .25 mg at 2pm; .5mg at 6 pm; .5 mg at 10 pm; and save the last .5 mg for during the night when I sometimes just take .25 mg.

I also have codeine 15 mg and I take one of these at 10 pm, and also occasionally before going to the movies or some situation where I can't be mobile.

Sleep, and in particular staying asleep was a big problem, and my GP gave me Temazepam 10mg. I have been using it for 2 months. This helped a lot, it did not give me a full night's sleep, but when I do wake up, often 3 or 4 times, I can generally get back to sleep. I do not walk the floors to the extent that I used to.

Today my doc asked me how I was doing with the Temazepam and I explained that I still woke up 3 or 4 times during the night. He suggested that I try Zolpidem and has given me a prescription for this. I understand Temazepam is longer acting, and if it did not keep me sleeping, how will the zolpidem (Ambien) which I believe has a shorter life of 2 - 3 hours?

Betty R.

Sent: Wednesday, January 30, 2008 1:19 PM
Subject: RE: I'd love to sleep all night long!!

I am now taking Ambien, doc gave me 5 mg tablets and said take one or two at night. Occasionally I have taken two, but generally I just take one. I still wake up every 1 and a half or two hours. Is it OK to take 10 mg Ambien on a regular basis?

I do feel much better the next day compared to the grogginess of Temazepam which I didn't realize I had until I was without it!

Most people can take Ambien on a daily basis without problems of tolerance or dependence. A very small percentage may have some problems but this a very unusual exception rather than something to worry about.

Sent: Wednesday, January 30, 2008 7:48 PM
Subject: Substitute RLS Med with Wine?

I am a healthy, 36-year-old female who has been taking Mirapex for RLS for about eight years. Sometimes when I have had only half a glass to a glass of wine (or beer) and had Mirapex in my system either beforehand or afterward (even only a small amount), then combined this with sleep, I would awaken with my heart racing, palms sweating, and even disorientation, kind of like an anxiety attack without the anxiety. Because I enjoy my glass or two of wine on the weekend, I have been on a search for an RLS medication I can use in place of the Mirapex on the nights I consume alcohol. Do you have any suggestions? I have tried Quinine, but to no avail. What about Neurontin or Sinemet (which I used regularly before Mirapex)? I would be grateful for any advice--thanks!

Alissa T.,
Philadelphia, PA

There is no known interaction between alcohol and Mirapex so your reaction is quite atypical. However, alcohol usually makes RLS worse which may explain some of your symptoms after consuming alcohol. If you really think that this reaction occurs only with Mirapex, then it might be helpful to try Requip instead. Although Requip is very similar to Mirapex, there is a chance that this change may help you.

Sinemet should not be used on a daily basis as it virtually always causes augmentation. Neurontin may be a reasonable choice if the dopamine agonists cause you problems when drinking alcohol. Of course, you could always give up drinking wine and not worry about this problem.

Sent: Saturday, February 16, 2008 6:19 PM
Subject: Mirapex Substitute

I recently emailed you about my inability to take Mirapex on evenings when I have a glass of wine. You had suggested taking Neurontin in place of the Mirapex, or I was also thinking about Sinemet (both of which I have actually taken in the past). I told my doctor about this, and he wondered what dosages you might suggest for both. I wouldn't think augmentation would be a concern, since I would only be taking this 'replacement' medication once or twice a week. I am currently taking .375 mg of Mirapex nightly.

You also mentioned Requip. What about taking that in place of the Mirapex when I drink? The Mirapex works wonderfully otherwise, so I don't really want to replace it altogether.

Your advice is greatly appreciated, as I presently have no health insurance and thus cannot afford to see a sleep specialist!

Alissa T.,
Philadelphia, PA

The dose of Requip needed to replace Mirapex is generally about double (or more) in mg (thus, .75 mg or more of Requip would be needed to replace .375 of Mirapex). The amount required may vary somewhat from person to person.

You could use Sinemet on an intermittent basis but you would have to experiment with the dose as there is no typical equivalent dose.

Neurontin is even more variable and requires titration (slowly increasing the dose every several days) to determine the correct dose. Typically one starts at 300 mg and increases as needed every 5-7 days. Sedation can be a problem with Neurontin (Lyrica is an alternative choice with less sedation but is more expensive as no generics are available).

Sent: Wednesday, January 30, 2008 8:26 PM
Subject: I Can't Sleep with My Husband!

I've been hunting on the internet for awhile about RLS and have found a ton of information about the patients who suffer from it. My problem is that there doesn't seem to be much information for the spouse/partner who also suffers because of a poor night's sleep resulting from the mattress bouncing every few seconds. We recently got married and, because of the constant bed shaking (along with the snoring - although I combat that with ear plugs), I can't sleep without medication.

I'm the one taking Klonopin to hopefully zonk myself out - he wakes up just fine and fairly well rested. I try to start in our bed but end up on the couch or guest bedroom every night - it's incredibly frustrating to lie awake and count the seconds between "episodes". Are there any specific mattresses that can help? We're discussing Memory Foam (or Select Foam) and the Sleep Number beds - any advice?

Thank you for any suggestions - we'd like to wake up next to each other for a change,

Sara B.

The memory foam mattresses are the best to reduce the effects of movements from bed-partners with RLS/PLMS. If this is not sufficient (this works for most but not all), then buying twin beds and then separating them by 1/2 inch at sleep time should solve the problem.

Upon my return from the fall vacation (where my PLMS/RLS became a nightly "full body event"), my neurologist decided to look into my diagnosis further... Clinically, he saw asymmetric hyper-reflexivity in my left leg (the leg most affect at night), as well as my left arm (never an issue at night)...he ordered an MRI of my cervical spine - came back fine , then an MRI of the brain (normal)- and finally a MRI of the Thoracic spine (also normal)... at this point, he threw up his hands and suggested I see a Neurologist at one of the local university (teaching hospitals)...

What, if anything, can I do??

Ann G.

Medical Reply

Your case is indeed quite complicated. However, the RLS part is more straightforward. If you meet the 4 clinical criteria of RLS then you have RLS. This needs to be treated with some medication when it is severe. Mirapex is a very good choice since it seems to have been helping. Although Mirapex may reduce the PLM on the sleep study it should not really affect anything else. Ask your doctor if you can restart this medication.

It may be helpful to change to Neurontin (or even Lyrica) if your neurologist thinks that it may help your seizure disorder as it also helps RLS/PLMS.

If RLS is preventing you from sleeping now, an opioid (Vicodin, oxycodone, etc.) may be helpful to relieve both the RLS and any muscle problems on a temporary basis.

A Reply from Ann

Sent: Sunday, February 03, 2008 1:21 PM
Subject: RE: hoping you can help...(long story, sorry)

I suppose I do meet the criteria for RLS however initially my symptoms were only those of PLMD...

You mention using an opioid temporarily for sleep... am I understanding you correctly that an opioid would not adversely affect the pending sleep study? because if so, then I will contact my Dr tomorrow morning and request a few days' worth....

Ann G.

Medical Reply

It is not unusual for PLMD to occur prior to RLS. Some specialists believe that in many patients, PLMD may precede RLS and thus be a harbinger of RLS to come.

Opioids generally have a short half-life so could be used prior to your sleep study to control RLS symptoms. Although most sleep labs like these medications to be stopped at least 3 days before a sleep study, it likely would not affect the results of your sleep study even if taken the night before the study. Additionally, if you can't get to sleep on the night of your sleep study (due to your RLS symptoms), then the sleep study will be completely useless. Therefore, it would be nice to have a drug to help you get to sleep if RLS does prevent you from sleeping.

As RLS is a clinical diagnosis based upon your symptoms while awake, it will be unlikely that a sleep study will add much. However, you may have other problems such as sleep apnea which may require other treatments. However, that would have little or nothing to do with your present complaints.

Sent: Sunday, February 03, 2008 10:50 AM
Subject: Pills for RLS

I take Mirapex 0.5MG, but still need to take zolpidem (Ambien) 10 mg. How long after the Mirapex can I take the Zolpidem. I am a sleep apnea patient and have a CPAP use this machine every night, but there are still nights when I'm up and awake at 2:00 or 4:00. Should I change something or times?

I am 5' and 140 lbs., female. I can only wait up to 9:00 or 10:00 to take the Mirapex, and take the Zolpidem around 11:00. I also, take Aspirin 325 mg, citalopram 20 mg, Crestor 10 mg, and Magnesium 250 mg. In the morning I take Nexium 40 mg, and L-thyroxine (Synthroid) 75mcg. My medications are all from the same physician, most of the instructions just say take once a day.

You can take Ambien (zolpidem) totally independently from the Mirapex. There are no interactions between the medications so just take the Ambien as needed.

It is possible that Mirapex may be causing some insomnia (only you can tell by stopping and restarting the medication). Sometimes a switch to Requip may then be helpful.

Sent: Monday, February 04, 2008 4:31 PM
Subject: IV iron therapy for RLS?

Thank you for the wonderful site and wealth of information. I am 45 years old and have suffered with RLS since I was about 17 years old. Over the past few years, it has gotten to the point where I can't stand the pain anymore. My doctor recently changed me to Requip and I am up to 1.25 mg daily. I have taken iron supplements for many years but usually remain slightly anemic. My recent lab tests indicated a ferritin level of 4.

My doctor has scheduled IV iron for me. I am seeing some things on the internet that scare me about this and yet I am so excited that this might help tremendously. Can you tell me how much IV iron I should be getting, can I get too much, and if the ferritin level is enough to indicate that the IV iron might be beneficial?

Dee

Iron therapy does have a small risk. Some people can get severe allergic reactions that may even cause death. These bad reactions are very uncommon but due to their severity are still a concern. Newer forms of IV iron used currently have much less of an allergic reaction risk.

About 60% or more of RLS patients who get iron infusion therapy will have full resolution of their RLS symptoms. However, this may last only 6-36 months. It seems that RLS patients lose iron much more rapidly than those without RLS so repeated infusions may be necessary (and tend to work quite well). Typically, we only give IV iron therapy to RLS patients who have significant iron deficiency anemia (usually with hemoglobin levels less than 8 to 10) despite adequate trials treating with oral iron.

As long as your doctor is monitoring your serum iron and ferritin levels (make sure that the ferritin does not go much over 200) then you should not have concerns about getting too much iron.

Sent: Wednesday, February 20, 2008 5:17 PM
Subject: Re: IV Iron Therapy

I have had some strange allergic reactions lately and was very nervous about the IV iron but received it 10 days ago with no problems. I noticed an improvement after about 3 days and AM SO MUCH BETTER!! I am still taking my Requip - .5mg at noon and 1mg at 5pm - but the Requip wasn't helping at all before the iron therapy.

Now I can actually forget to take my dose at noon because my legs are not killing me! I still have symptoms if I forget the Requip but it goes away after I take it and I AM IN HEAVEN! Thank you thank you thank you for your help!!

Dee

Sent: Tuesday, February 05, 2008 6:39 AM
Subject: RLS treatment?

I am wondering if you can help me , I have had RLS definitely for the last twenty four years but probably a lot longer than that, but it has got increasingly worse. Am on iron as ferritin level was very low, I have to stop taking it for a week every so often as it makes me unwell, when I stop a few days later the RLS is back, what should the level go to to keep the RLS at bay? I don't want to go on medications if I can help it .

The RLS is not just in my legs but also my back, arms and wrists and is there 24/7. I have heard exercise helps ,I swim but with my depression that is hard to do.

Considering the duration, intensity and distribution of your RLS symptoms, you clearly have a very severe case. Typically, severe cases need prescription medication to relieve symptoms. Although non-drug therapy may help somewhat, you should really consider going on RLS drugs (Requip or Mirapex to start with). You will feel much better. There is no reason to suffer when good help is available.

Sent: Tuesday, February 05, 2008 2:03 PM
Subject: Methadone rebound/withdrawal??

After about 14 nights of almost no sleep, I finally slept last night. Toward the end of those days, I was doing crazy things, stupidly drove a car and caused $3,000 of damage. I'm not sure what's going on. I have had it all my life, horrible at menopause (now 64). From then on, I tried huge list of drugs, including some in all the categories. Sinemet rebounded (as we now expect), another drug did, and then Mirapex, which felt like a miracle for a while, rebounded. Requip made me sick.

The neurologist I see recommended methadone. 10 mg seemed like about the right dosage and seemed to work for a year (I also take .5 clonazepam), but then realized I was up with RLS at 12, 2, 4, then couldn't sleep anymore. I called and he said go to 15 mg. At that point, I began not sleeping at all. I didn't know methadone could rebound, but that's what it seemed to be. The doctor said you must get off it: go to 10 tomorrow, in two days go to 5, then stop. I went to 5, all the time not sleeping, feeling suicidal and hopeless. He sent me to a shrink who prescribed Wellbutrin.

I went to the emergency clinic Saturday. After adding Ambien to the mix, I slept that night. But since then, I had two nights up and last night was able to sleep for four short bouts. The people on the discussion board have been tremendous. One said you should never stop methadone that abruptly. Does methadone rebound? How should one stop taking it?

I know I'm depressed (with good reason I think, still...). I feel like I'm at the end of the line as far as medications go and that scares me. I had to quit my job because of this. I'm trying to freelance but have been so antsy I can't do much at all.

Your use of the term rebound is incorrect (I am only pointing this out so that you can better communicate your issues to other doctors who may not even know this term as it applies to RLS drugs). Rebound occurs when RLS symptoms occur as the drug wears off. For example, if Mirapex is taken at 5 pm, it may be out of your system by 3-4 am when (if you are awake) there will not be enough Mirapex left in your body to relieve the LRS symptoms.

Rebound does occur frequently with Sinemet (due its very short duration of action of 3-4 hours). However, I assume that you are referring to the augmentation (worsening of the RLS due to taking a drug) problem that occurs so readily with Sinemet. Augmentation does not occur with opioids such as methadone. You may be referring to tolerance (this is when a drug becomes less effective with time and increased doses are needed to get the same effect) which can occur with opioids. Taking a drug holiday from the drug for a few weeks often restores the drug's effectiveness so may be worthwhile.

However, it is not clear that you were actually developing tolerance to methadone. It is possible that your RLS may be worsening or other factors (stress, depression, hormones, drugs, etc.) are worsening your RLS thus requiring more methadone. This issue needs to be cleared up to fully understand what should be done.

Stopping methadone (even abruptly) at the dose you were taking should not cause any withdrawal problems. However, since that drug was the mainstay of your RLS treatment, you could expect your RLS to dramatically worsen when that drug is reduced or discontinued.

Sent: Tuesday, February 05, 2008 6:54 PM
Subject: RLS from opioid withdrawal?

Hey I've had RLS symptoms for the last 6 months due to opiate withdrawal. I guess it could be because of other things, but I never noticed these symptoms until I quit taking the opiates (6 months ago). I have just been prescribed Requip .25 mg a day (at night). I'm excited to see what happens, but after reading most of the posts on this and other web sites, I'm nervous that the side effects of the medicine will out way the relief of RLS.

It is extremely unlikely that withdrawal from opioids would cause RLS. It is most probable that you had RLS already that was being masked (treated) by the opioids. When you stopped the opioids, the RLS were no longer being treated/masked and thus became apparent.

Although there are many letters describing problems with Requip (and other dopamine agonists), the vast majority of RLS patients who use the medications do very well without side effects.

Sent: Wednesday, February 06, 2008 1:55 AM
Subject: RLS questions

1. Does Requip cause weight gain?

2. Does Cymbalta have a less chance of causing RLS than some others in its class? Can it actually help RLS?

Jane T.

Requip may cause weight gain but this is only in a very small minority of users.

Cymbalta is similar to other SSRI and SNRI antidepressant drugs in its ability to worsen RLS. It may help some RLS patients, possibly by reducing their anxiety levels (if anxiety was prominent enough to increase RLS symptoms).

Sent: Wednesday, February 06, 2008 5:49 PM
Subject: RLS treated with carb/levo (Sinemet)?

I have had RLS for many years and just last year I finally got something for it. My doctor prescribed me carb/levo. It worked instantly! I do find that my symptoms seem to be worsening and the carb/ levo does not always work. I am wondering if I am building a tolerance to it or if I should up my dose. It is tolerable right now. When the medicine doesn’t completely work, I sit on the floor with my legs apart and stretch to the center, then to each side, I do this at least 4 times per side and it seems to work.

We no longer use or recommend Sinemet (carb/levo) for daily treatment of RLS as most patients develop augmentation (worsening of their RLS due to taking the drug). It is best to change over to Requip or Mirapex which are the 2 drugs of choice for RLS and the only 2 FDA approved drugs for this disorder.

You may need some opioids (like Vicodin) when you go off the Sinemet as the RLS may worsen dramatically for a week or so.

Sent: Friday, February 15, 2008 6:58 AM
Subject: RE: RLS treated with carb/levo (Sinemet)?

Are Requip and Mirapex for Parkinson's disease also? What type of doctor should I be seeing? My gynecologist prescribed my carb/levo.

Requip and Mirapex were initially developed for Parkinson's disease but now have both been approved for use in RLS. The best doctors for treating RLS are neurologists and sleep specialists. However, any good general doctor (family doctor or internist) should be able to treat the majority of cases that are not too complex.

Sent: Wednesday, February 06, 2008 6:17 PM
Subject: RLS in children?

I am a 66 year old female that has had RLS since I was a teenager. I take 1 mg of Mirapex a day and still walk the floor sometimes. My 5 year old granddaughter spends one night a week with us and she kicks and pulls at her legs all night long. She has even said there were ants crawling over her legs. (I have never used that phrase to describe RLS, she came up with it on her own.) Her pediatrician said he was not that familiar with RLS and could not prescribe anything for her to take at such and early age.

Please give us any info on children with RLS and any ideas that might help this little girl. She has an identical twin sister that does not have RLS.

RLS is actually quite common in children (about 2%) and is even more common in those who have a family history of the disease. Unfortunately, there are no FDA approved drugs for children so most of use Mirapex or Requip (in the smallest possible doses) and only when really necessary.

Sent: Saturday, February 09, 2008 10:56 AM
Subject: Can I take both Requip and Sinemet?

My husband takes one 1 mg Requip daily in the evening, but often it doesn’t control his RLS for the entire (next) day. I understand that he could increase his Requip dosage to take two pills per day, but he has not had time to get a new prescription from his doctor. He still has some Sinemet from last fall before changing medications, and he told me today he wanted to try mixing the two. I gave him another Requip instead, and told him that he shouldn’t mix the two without checking with a doctor.

Would it be harmful for him to take both?

Also, he takes at least two dosages of Ibuprofen every day, which makes me concerned about his liver. What type of over-the-counter pain medications would be best for him to take? He also suffers from chronic congestion and sinus infection, and has taken multiple rounds of antibiotics, and nothing has helped so far. I’m thinking he probably has allergies, but I understand that it isn’t good to take antihistamines while taking Requip. Is that right?

S. C.

It is better to take 2 Requip per day instead of adding Sinemet as it may induce augmentation (worsening of the RLS due to taking Sinemet).

There is no problem with Requip and antihistamines but rather with antihistamines and RLS (they make RLS worse, except for the non-sedating ones like Claritin).

Sent: Saturday, February 09, 2008 1:59 PM
Subject: Requip causing sleepiness?

I take Requip for restless legs and am so groggy all day every day. When riding in the car or airplane at any distance day or night, I am miserable. Any suggestions on how to have an awake life?

Try Mirapex instead. If that also causes sleepiness, change to another class of RLS medication (such as a painkiller).

Sent: Tuesday, February 12, 2008 9:03 PM
Subject: Ultram ER and Requip

My GP gave me a sample of Ultram ER, 100 mg, when I asked him if there was something strong I could take when I really hurt. After my physical, on my GP's advice, I saw a neurologist about RLS. He prescribed Requip 1 mg, one before bedtime....which, all but two or three days a month, really works.

Can I take Ultram and Requip both at the same time? I also take amitriptyline (Elavil) 25 mg...three before bed. And alprazolam (Xanax) .25 mg...two before bed.

I have Anxiety Issues, RLS, and Fibromyalgia. Tonight, I have a severe back ache and it's the reason I'm asking about the Ultram. My GP gave it to me last summer and this is the first time I've felt I needed it. I used to take Vicodin, when I felt as bad as I do now.

For tonight, I've only taken the Ultram...no Requip...no Amitriptyline. I'm just really nervous about mixing all this stuff together.

Ultram (tramadol) is an very good RLS drug for most patients. However, for treating RLS which occur mostly in the evening (I am assuming that is what you are treating rather than all day RLS symptoms), the shorter acting Ultram (which is also available as a cheaper generic) rather than the 24 hour acting Ultram ER (not available as a cheaper generic) is a better choice.

There is no problem mixing Ultram and Requip (although you should always check with your own doctor before doing so as he may have other information that can affect this decision) as that is commonly done by RLS specialists.

You may want to discuss using amitriptyline with your doctor as this drug tends to worsen RLS. Even though it is used for promoting sleep and for treating fibromyalgia, the newly FDA approved fibromyalgia drug Lyrica may be a better choice as it also helps RLS.

Sent: Thursday, February 14, 2008 6:31 AM
Subject: Re: PLMD Questions

I have tried codeine (15-60 mg), and hydrocodone (2.5-15 mg) only at bedtime to control my night time PLMD. I noticed that they both seem to stimulate my system rather than the more common sedation side effect. Its kind of like a cup of coffee at bedtime. It hurts my ability to sleep.

I also tried tramadol (25-100 mg) which also seems to be moderately stimulating.

I am considering a low dose of methadone at night to help control my PLMD. What is the clinical experience with methadone for PLMD ? Does methadone act in the same way as codeine and hydrocodone?

All narcotics tend to work in similar ways for RLS and PLMD. The major difference is usually their potency (methadone being more potent than hydrocodone which is more potent than codeine). However, the side effects may vary (and often not relative to the drugs potency). Sometimes you have to keep trying the different opioids until you find one that works for you. However, the odds are that methadone may be quite similar to the others.

The best drugs for treating PLMD are the dopamine agonists followed by the anticonvulsants.

Sent: Thursday, February 14, 2008 6:27 PM
Subject: Re: PLMD Questions

I have tried Requip and Mirapex without success. I am currently using gabapentin, which has lost much of its effectiveness and temazepam which works pretty well at moderate doses. I still experience some tiredness the next day.

I recently participated in a Johns Hopkins (JH) study which involved 2 sleep studies, an MRI and 3 PET scans. They are examining dopamine receptors in the brain with a non-RLS control group. JH also has an experimental protocol which involves, among other requirements, multiple IV iron infusions (4 times 500 mg iron).

JH mentioned an anti-convulsant called Lamictal. They seemed to feel it was a useful alternative to gabapentin. What is the clinical experience with Lamictal ? Beyond the smaller trial (about 10 participants) are there any further studies on Zonegran?

Most RLS experts commonly use all the anticonvulsants for treating RLS and PLMD. Although some have been studied more the others (typically the older ones like gabapentin have been much better studied since they have been around longer), they all have fairly good potentials for treating these disorders. I often try several of the newer and older ones before finding the correct one for difficult to treat RLS patients.

There is not one anticonvulsant that is better than other in general. As above, they all may or may not work in any given individual. I tend to use more Lyrica currently (it is being investigated for use in RLS) as it tends to have less side effects (typically less sedation). However, other than a few of RLS specialists like me, few are using Lamictal or Zonegran for RLS and few studies have been done so it is very difficult to answer your question. It will likely take trial and error to figure out which works best for you.