Patient letters on RLS symptoms and remedies- Page 89

Sent: Monday, October 19, 2009 4:22 PM
Subject: side effect for Requip and Mirapex

I am a RLS sufferer who takes Requip nightly for symptom relief. While reading the insert for my medication recently, I was alarmed to read that melanoma has now been linked to the usage of this drug in Parkinson patients. The patient information brochure noted that dosage taken is not necessarily the reason associated with the increase of melanoma so that those, such as myself, taking the drug at a much lower dose may still be at risk.

The reason I was alarmed is that I have had a number of suspicious moles removed in the last few years, several of which were diagnosed "atypical" and had to have the surrounding tissue also removed. I am concerned that this medication is causing the sudden increase in possible cancerous moles. I have been taking Requip since 2003, only six years and am concerned about the long-term effects of continuing on this drug.

My main reason to writing to your group is that I think this possible side effect should be noted for these two drugs, Requip (Ropinirole) and Mirapex (Pramipexole), which both have the same warning label insert.

Brenda H.

Reading the package insert (also called product information and both are abbreviated by PI) is a very smart thing to do. It will often give you information that may help you understand better how to use your drug or identify side effects or interactions with other medications.

However, in this case a little information is dangerous. There have never been any reported cases of a dopamine agonist such as Requip or Mirapex causing melanoma. The reason for the warning about melanoma is that this problem is increased in patients with Parkinson’s disease and therefore the FDA requires (in their wisdom) that any drug used to treat Parkinson’s disease (such as Mirapex and Requip) carry a melanoma warning. To the best of our knowledge (that means experts such as me), there is no link between Mirapex or Requip and increased risk of melanoma.

Sent: Thursday, October 22, 2009 11:56 PM
Subject: Requip making me sleepy?

The side effects that I experience w/Requip are pretty severe. First, I get very hot, especially in my face. That's so bad, I have to put a fan directly on my face and upper torso. Then, a few minutes later, I feel somewhat nauseous. Shortly thereafter, I HAVE to go to bed. It simply knocks me out.

I tried taking the Requip earlier, as suggested, with my evening meal, and I took only one half a tablet, but I still experienced the exact same side effects. I had to go to bed, and "sleep it off."

The Requip DOES, however, give me a restful sleep, with no leg movement. My problem is: sometimes, I need meds in the early evening, when it is not possible to take Requip and go to bed. I cannot go out for dinner, or to a movie, etc, I have tried cutting out nearly all caffeine, and nearly all sugar, and I see no improvement.

Would Mirapex be a better option? Does it have the same side effects? Does it frequently cause weight gain? Is marijuana an alternative option?

The thought of having this condition the rest of my life (I'm 58 and I work full time at a desk) is very depressing for me. I have not seen a specialist, I am self-diagnosed and I simply called my doctor and asked for a Requip prescription. I am afraid that at some point my kids will be shuffling me around, completely zoned out on medications that control the leg movement.

KR

You probably should see a specialist to make sure that you have the correct diagnosis and to get better treatment.

Mirapex may work better or worse and the only way to find out is to try it. Both Mirapex and Requip are dopamine agonists but they can act quite differently (good or bad) in any given individual. Mirapex may cause weight gain but that occurs in a small minority of users.

Marijuana does help RLS but presents its own challenges. There are other choices such as the anticonvulsant drugs (gabapentin, Lyrica) and painkillers (opioids or tramadol) which may work better for you and let you stay awake.

Sent: Friday, October 23, 2009 7:25 PM
Subject: Mirapex dosage

My neurologist has raised my dosage of Mirapex over the last 8 or 9 years. I am taking 1.5 mg now and find that the drug no longer works for me unless I add another drug such as hydrocodone. For a while I took Neurontin 300 mg as well as Mirapex. That combo would work the first night, somewhat the second and not at all the third night. I would feel tired and hung over the next day.

He suggested I gradually raise the Neurontin to 900 mg and still take Mirapex. I never got up to 900 mg. I didn't like how it made me feel at 600 mg as it made me depressed and tired ( I had hoped to get off Mirapex). I have tried other drugs such as Requip, Lyrica and even Klonopin. They all made me feel so awful the next day that I discontinued them.

Sleep-deprived, distressed and depressed, I called him today and received the advice to increase the Mirapex to 200 or 300 mg or EVEN 400! Would you please give me your advice on what to do? I feel that such a high dose would be bound to have side effects. I am desperate for good quality sleep. Or any sleep for that matter.

R.G.P. in New Mexico

It is no surprise that increasing your dose of Mirapex has helped very little. Typically, raising the dose above 1-1.5 mg does little for RLS symptoms as that is usually where this drug plateaus for RLS patients (the plateau is much higher for Parkinson's disease patients which is likely what is confusing your neurologist). Increasing your dose of Mirapex at this point will generally cause more side effects with little or no improvement in RLS symptoms.

From your story, it is quite clear what is your next best option. Adding an opioid at a low dose would very likely relieve your RLS symptoms and cause few side effects. You can use hydrocodone but you would then have to go to a compounding pharmacy to make the drug for you without the addition of acetaminophen (which is the usual way this drug is produced and the acetaminophen does nothing for RLS but adds unnecessary risk of side effects).

I typically prescribe oxycodone or methadone in very low dose at this point as they work very well (especially the methadone) but most doctors are not very comfortable using these more potent opioids for RLS (or much of anything else).

Sent: Saturday, October 24, 2009 6:02 AM
Subject: Re: Mirapex dosage

Would the dosage of hydrocodone or oxycodone need to be raised from time to time or could it remain the same over the years?  Would it be likely that I could reduce the Mirapex gradually?

Side effects, like emotional ups and downs (more than usual) and constipation, which I experience with hydrocodone?

R.G.P. in New Mexico

Most of my patients who are on opioids manage to stay on stable doses for years (I have many on the same dose for almost 20 years). There are days when the might need a higher dose (like when they are stressed, have other problems like back pain, etc.) but overall the dose typically remains steady for most RLS patients.

You may very likely be able to reduce your Mirapex dose as you are already probably on the plateau. You may not be able to notice much difference from your current dose 1.5 mg (once you have added an opioid) until you get below the .75 to 1 mg range. With a higher opioid dose, you would probably get by without any Mirapex but it may be best to use the 2 drugs together allowing the dose of each to be lower which should keep side effects minimized.

The side effects of each opioid may be similar but may still vary from one to another. It might be worth trying a few different ones to see which causes the least side effects and works the best for you.

Sent: Monday, December 14, 2009 10:55 PM
Subject: botulinum toxin A

We communicated a short while ago, and I began lessening my dose of Mirapex to 3/4 of a 1.5 mg tablet plus 600 mg Neurontin. That didn't work much of the time, so I would add 5 or 10 mg hydrocodone. Some nights nothing would work, so I tried the routine my neurologist advised: increasing the Mirapex. So now I am taking about 2.25 mg Mirapex. I don't feel well with that amount, and I worry about the long term effects. I have recently read about the use of Botulinum Toxin A for RLS.

Do you know of this treatment and could you tell me your opinion of it and your experience with it?

RGP

Your dose of Mirapex is getting very high. The majority of patients do well with a maximum of 1.5 mg. Higher doses do help some patients but most only get side effects when taking over 1.5 mg and little if any benefit.

There was an article or 2 expounding the benefits of Botulinum Toxin for RLS but further more scientific studies have yet to prove this benefit. Furthermore, I have seen a couple of patients worsened with this treatment.

Sent: Sunday, October 25, 2009 11:20 AM
Subject: RLS Friendly Migraine Medicine

Can you recommend a RLS friendly medicine that I can use for migraine headaches?

Jeanne

Virtually all the current migraine medicine used today is RLS friendly. However, it always pays to check with our list of drugs that worsen RLS (on our free RLS Medical Alert Card or on our RLS Treatment Page).

Sent: Monday, October 26, 2009 8:48 AM
Subject: Flexeril and RLS

I have had RLS since childhood, but did not know what it was. Last April I started taking fluoxetine (Prozac) and found that I had uncontrollable movements, mostly when trying to sit still. I stopped taking the fluoxetine and the symptoms improved greatly, but not completely.

Last week, I sprained my neck and my TMJ become so bad that I was unable to chew. The TMJ dentist prescribed (Flexeril) cyclobenzaprene 5 mg. I took a half yesterday, and last night the RLS was so severe I couldn't sleep. I am very scared. Will these symptoms subside when the muscle relaxant wears off? I am scared I am going to feel like this permanently and it's making me very anxious.

Alice

Typically, Flexeril does not worsen or help RLS. Many doctors prescribe it to treat RLS as it sounds as if a muscle relaxant should help this problem. However, even though the Flexeril should not have exacerbated your RLS, it sound like this is the case but the problem should not be permanent and should dissipate when the Flexeril is out of your system.

Sent: Tuesday, October 27, 2009 4:53 AM
Subject: Re: Flexeril and RLS

Thank you; it's true, I am gradually returning to my "normal" RLS and not the very severe type I experienced for a couple of days.

Sent: Monday, October 26, 2009 6:01 PM
Subject: Sprained ankle making RLS worse?

A week ago I sprained my ankle and have swelling and modest pain off and on. I believe I remember you saying that trauma to the lower body can worsen RLS and mine has been giving me fits since the accident, significantly worse than usual. Frankly, this is more distressing to me than having to cope with the injury itself.

Can you confirm that these two things can be connected and if so, can I look forward to a reduction in symptoms once my ankle heals? Should I just go ahead and increase my medicine during this period?

John

When we say trauma, we mean something that is much more significant such as a bone fracture or major orthopedic surgery (such a hip replacement or spine surgery). Your ankle sprain may be worsening your RLS by keeping you more sedentary (and of course RLS is worse when you are at rest for longer periods of time). Additionally, if you are experiencing more stress/anxiety, that could heighten your RLS symptoms.

Taking more RLS medication or just taking some opioid painkillers (such as Vicodin) may improve your RLS symptoms during your recovery.

Sent: Wednesday, October 28, 2009 11:32 AM
Subject: Gabapentin

I have had RLS in the evenings and PLMS since I can remember. It used to be a joke in my family that I would "kick" anyone who shared a bed with me, and thus on family vacations I always had my own bed. Now it is a serious problem as I live with my boyfriend and he can't sleep because of my constantly twitching legs (they twitch about every 20 seconds throughout the night, and the restlessness/urge to move my legs starts as early as 2 hours or more before I go to bed, depending on how tired I am). I also always feel tired in the mornings and throughout the day, and caffeine is sometimes helpful in keeping me awake and productive at work (but limited to 1 cup of tea or coffee in the morning, maximum). I wake up several times throughout the night and am moody in the mornings because of sleep difficulties.

I tried some home remedies that I read about: B-vitamin supplements (which I continue to take), exercise, elimination of caffeine...with no improvements. I went to the doctor about a month ago to see about medications, and she prescribed me gabapentin starting at 100 mg and told me to increase by 100 mg each week and to cap it at 400mg. At 100mg the first few days my boyfriend reported that I kicked harder, and I still awoke at night but felt very unbalanced and had blurred vision when I walked around. I started to feel more refreshed in the morning after taking 100 mg for about a week.

When I increased to 200 mg, I woke up VERY groggy and I started having difficulty breathing, as well as a feeling that I was getting sick (sinus mostly), and some anxiety surrounding those symptoms. I emailed my doctor and she told me to try staying on 100 mg or staggering each pill rather than taking them at the same time. I tried going back down to 100 mg for a few days but the symptoms continued and I couldn't fall asleep because the difficulties breathing. I decided to discontinue taking gabapentin, and the doctor said I could try Lyrica. Based on what I've read about the two drugs it seems as though they are so similar and I may have similar side effects. It seems that even on such a low dosage of Gabapentin I was having unusual and alarming reactions that weren't worth it to me, and were not really alleviating my symptoms.

Just to give you a little health information about myself, I am 26 years old, have always been active and continue to play soccer several times a week, and I am a vegetarian (for about 7 years now). I had blood work done and my iron levels are borderline but my doctor did not recommend supplements because they are close to being normal. The only prescription medication I take currently is Yasmin for birth control, and I don't have any major health or mental health issues that I know of.

Could my reactions to gabapentin be indicative of another underlying condition? Do you have any suggestions about medical treatments to try?

LMA

Some of your side effects from gabapentin are very common (such as the grogginess) however, the difficulty breathing and sinus problems are very unusual side effects. Lyrica may cause somewhat similar problems but often patients tolerate it much better than gabapentin. It is often worth a try.

However, the current drugs of choice (and the only currently FDA approved drugs for RLS) for RLS are Mirapex and Requip. When taken at low dose they usually work very well with few side effects. They are also the most effective drugs to reduce the PLM (leg kicks) at night.

Iron deficiency is very important to diagnose and treat for RLS patients. We suggest that every RLS patient get a serum ferritin level (much more sensitive for iron stores/levels than all the other tests) and that you should be treated if the ferritin is below 50 (most labs only require the ferritin to be 10-20 to be considered normal).

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor to bring her up to speed on how to treat RLS.

Sent: Wednesday, October 28, 2009 12:10 PM
Subject: RLS and chemo

I have severe RLS and also was diagnosed with endometrial cancer on 6/11. I had a radical hysterectomy at that time and after the surgery, I also had 3 brachytherapy radiation treatments and I've had 4 chemo treatments. I need to have 2 more. I noticed that since I started chemo, my RLS has gotten worse. Can the chemo aggravate my RLS?

I take .5 mg of Mirapex at 5:30 P.M. and .75 mg at 9:30 P.M. which doesn't seem to help relieve the RLS especially at night. I called my RLS doctor and the nurse called me back and said that being that I'm taking chemo that there was nothing more he could do for my RLS. Wouldn't an opiate be helpful?

I feel at the end of my rope so-to-speak. I just can't keep going on with little or no sleep every night. I feel like a zombie the next day.

Carol Ann S.

Although it is always possible that the chemotherapy could be exacerbating your RLS but I suspect that is not the problem. More likely, it may be one of the medications given along with the chemotherapy to ease the chemotherapy side effects (such as antihistamines or anti-nausea medications). There are often substitutes for these RLS unfriendly medications that are equally effective but do not worsen RLS.

If that is not the case, then taking an opioid (like Vicodin) may be very helpful to treat your increased RLS symptoms especially as you are already on fairly high doses of Mirapex.

Sent: Thursday, October 29, 2009 10:38 AM
Subject: Difference between RLS and Akathisia?

I have been reading and reading about akathisia for some new members in my groups. Is there a simple way to explain the difference? Am I right that akathisia has more to do with the muscles and it is like an inner restlessness? But it does not include the urge to move and the other diagnostic criteria for RLS. Am I getting warm?

I had to go to several sites and am still confused as to how to actually describe it. When you read the two descriptions, I can see how newbies would get very confused, because I am, too!

Donna McLellan

Akathisia is in fact quite similar to RLS but there are many significant differences. RLS has even been called akathisia in the legs.
Most all the cases of true akathisia occur with the heavy duty psychiatric drugs used to treat major severe depression, schizophrenia and manic depression (called neuroleptic drugs so that one of the correct terms for this condition is actually NIA or Neuroleptic Induced Akathisia). However, these same neuroleptic drugs also worsen (or in mild cases may bring on) RLS.

Akathisia is an inner general restlessness that occurs equally when sitting or standing (most RLS patients get some relief by standing) but not when lying down. Although the urge to move is present, it is not located in the legs and just moving the legs is usually not sufficient to relief the symptoms. Unlike RLS, akathisia does not follow the circadian rhythm and is not worse at night. Otherwise, it does fulfill some of the RLS criteria but not all of them.
Since the same type of dopamine blocking medications seem to be a factor in both conditions, they may actually share some common origins but that remains to be determined when we can figure out what really causes either of them.

Sent: Sunday, November 01, 2009 4:54 PM
Subject: RLS Without PLMS?

I have had RLS for about 20 years beginning in my early twenties. I can only describe the sensation in my legs (and at times my arms) by saying it feels like every muscle or nerve deep in my legs (especially thighs) are vibrating; or the way a heart beats when its in fibrillation. Actually, that describes it best. Moving is the only thing that helps. I also occasionally sleep with my legs under an electronic back massager. It moves my muscles so I don't have to be up and about all night.

Oddly, I noticed that when my neurologist tested my reflexes with a tuning fork or whatever the sensation in my legs stopped temporarily. I'm probably the only person I know who has had an EMG and felt good during it because the nerve stimulation stopped the RLS during the test.

It's not that I am nervous and just moving around. Moving is the only thing that causes that fibrillation sensation to stop, only for a couple of seconds though.

I have a number of other health problems--pituitary tumor and hyperprolactinemia and autoimmune thyroiditis. A radiologist said there was "plaque" in my basal ganglia. There is also a white matter lesion in the right frontal lobe. Very tiny lesion that hasn't changed in years. When I had a sleep study done it showed I only got 96 minutes of sleep, 7 complete awakenings, and zero REM sleep. Needless to say, there's severe sleep deprivation. With Ambien I can get a few more hours but not always. My circadian rhythm is really messed up.  Can I have RLS without having PLMS? A sleep deprived EEG revealed something in the temporal lobe, during hyperventilation.

Tegretol at 200 mg three times a day has worked for years but now it's not working nearly as well. Klonopin helps with anxiety but not with the RLS symptoms. Are some drugs better than others in treating the awful sensations in the legs? Is Depakote effective?

When I went to the sleep center in the early 1990s, the medical director said narcotics can be used, but he would never recommend them for someone with my condition, it would be different if I had kidney diseases--pituitary tumors don't seem to warrant aggressive treatment of symptoms.

I think the sleep specialist that way because I didn't have PLMS. In other words, my RLS symptoms are entirely subjective, though the other medical conditions are well documented and objective.

P.J.

Although over 85% RLS patients have PLMS, a minority do not have them. They are not necessary to make the diagnosis of RLS which is made completely on the subjective symptoms (so your previous sleep specialist was quite incorrect).

The best drugs to treat your RLS symptoms are Mirapex or Requip. If they do not help (they help over 80-90% of RLS patients), then other anticonvulsant medications than Tegretol and Depakote work better, including Neurontin or Lyrica. There is no reason that you can’t use opioids (narcotics) and they work very well but should only be tried when the other RLS medications have failed.

Sent: Monday, November 02, 2009 9:52 AM
Subject: Mirapex at night, but what to do during the day?

I need to contact my RLS doctor regarding the worsening symptoms I am having during my period. It now spreads into my arms as well as my legs and instead of usually being night symptoms, affects my whole day for about a week and a half. All of my symptoms are much more pronounced during this time of the month. This has been gradually worsening over the last year.

I take 1 mg Mirapex at night, but it makes me very tired. I have tried cutting it in half during the day, but it makes me too tired to drive. I have three kids and need to take them to and from school.

What should I suggest to the doctor that will not give him the wrong impression? I have never taken heavy medication and don't know what is appropriate for my situation.

Monica

It sounds like you have developed augmentation from your Mirapex. This is when a dopamine agonist (like Mirapex) causes worsening of your RLS. The worsening is usually manifested by the spread of symptoms from the legs to other body parts (usually goes to the arms first), earlier onset of symptoms (can even extend to early morning), an increase in symptom severity requiring less time to occur and less benefit from the Mirapex.

The treatment for this problem is to get off the Mirapex. However, that will worsen the RLS markedly for about a week or so. Typically, opioids are necessary to cover your symptoms for that period. Changing to Lyrica or Neurontin as maintenance drugs for your RLS is usually recommended at that point.

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). It covers augmentation in detail. Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor.

Sent: Monday, November 02, 2009 10:38 AM
Subject: 2 Questions

First of all, have you heard about the non-drug musculoskeletal approach to treat RLS? It is a very interesting theory and it would be amazing if it would work out. I know this is exactly the type of thing that would typically be overshadowed by the drug companies, but I am wondering what your take it on this. Here is a link:

http://www.drmonk.co.uk/restlesslegs5.cfm

Secondly, is it possible that this is all in our heads? I need to stretch and move around all the time (as much during the day than at night), but for me, it seems the physical sensations themselves are so subtle that sometimes I wonder if I am bringing them on myself. I don't have any problems with sleeping by the way. Is it possible that I have a similar condition that is not RLS? It just seems like a lot of this is mental. Now reading that some people can have RLS in their chest, I start having the desire to stretch my pectorals.

Nicolas

The osteopathic/chiropractic approach is very interesting and we have seen several other similar treatments recommended for RLS. However, none of these have any proof other than a few anecdotal cases (and with the very high placebo response to RLS, this means very little). For any treatment to be considered valid, it needs to have double-blind controlled medical studies done to show that it works better than placebo. Until this type of study is performed, any claims are merely similar to recommending snake oil. Clearly, there may be treatments out there that have not been verified but that could be very helpful but it would be hard to find the few such remedies out of the thousands of unproven ones that have been touted as being beneficial for RLS.

When an effective therapy exists and is found, typically word of mouth will produce hundreds or thousands of recommendations for this therapy. Treatments like the musculo-skeletal approach above sound very good, but remember when something sounds too good to be true, maybe it isn't.

RLS is not brought on by our heads although like any condition, anxiety, stress, depression can make it worse. RLS is definitely a real neurological disorder that even has genetic correlations. When mild (similar to mild back pain), it may not prevent you from sleeping or even need any medication treatment.

From your letter, I do not have enough information to tell you whether you have RLS. However, if you have the 4 diagnostic criteria (listed below), then you likely have RLS.

Sent: Thursday, November 05, 2009 3:03 PM
Subject: RE: 2 Questions

For the musculo-skeletal approach, there is actually a study going on right now conducted by these guys:

http://www.rlsuk-esa.org.uk/index.php?option=com_content&view=article&id=137&Itemid=131. They are only planning to do it on 40 people, but it's a start. I will be monitoring this and keep you in the loop (unless you would prefer me not to).

As to whether I have RLS or not, I am pretty sure I do. However, going back and thinking about it, I am now thinking that it is not impossible that it is due to marijuana withdrawals. I used to smoke regularly and quit, and a few days later my RLS started. It slowly subsided, I started feeling better (possibly after the marijuana was leaving my system). On one weekend I started smoking some again. Sure enough, a few days later, my legs started acting up again. I know that Requip and Mirapex affect the Dopamine and Opioid receptors, and so does Marijuana. I'm in no way scientific enough to understand exactly what they do, but there might be a connection there. I wouldn't be surprised if withdrawal symptoms from marijuana would be underestimated, as the pot that we have these days is no joke compared to what it was in the 60's when most of the research was made. It is much more potent. Either way, I am now going to be completely off the whacky tabacky until at least December to see what happens. Does this make sense?

Also, I am wondering why GABA drugs are not the first line of medication for RLS. From what I am reading, they seem to have lesser side effects, do not cause augmentation like Requip and Mirapex, and tolerance does not develop. I know that the new XP13512 is a GABA drug (I think you mentioned that we will know if it gets approved in November), but I am simply wondering why this is the case. Also, if it is approved by the FDA, will it automatically be available in Canada?

I am asking a lot of questions, but like I have told you in previous correspondence, I am only 24, and I want to rule out every possibility before having to take medication. At least I am learning something! This is very interesting.

Nicolas

The chiropractic trial in England does sound interesting and I would be very interested to see their results. They do seem to have a control group (for at least 1/2 the study time) and we will see if the specific manipulation does better than the non-helpful one.

Marijuana actually relieves RLS symptoms so it is possible that you have been masking some of your RLS symptoms by smoking marijuana and then the symptoms come back when off the drug.

It is very likely that with the approval of the XP13512 drug (we will find out on November 9th, so stay tuned) that there will be a paradigm shift with alpha 2 delta drugs (which includes Lyrica) being considered as first line drugs for RLS. However, getting FDA approval here in the USA does not mean that they will be automatically approved in Canada. Your country has to perform its own review process (the company making the drug has to apply for a separate approval in Canada although they can use the same studies done to get the USA approval) and then decide to approve the drug.

Sent: Tuesday, November 03, 2009 7:08 AM
Subject: Rebound Symptoms with Requip?

I have suffered from RLS (arms and legs) for as long as I can remember. I was always able to tolerate the restlessness and pain by persistently wiggling my arms and legs. In the past year or so the symptoms have worsened significantly and I have lost sleep on many nights. I finally sought treatment and my physician prescribed Requip. My starting dose was 0.5 mg which was titrated up to 1.0 mg after 7 days.

I immediately had relief from my symptoms and slept through the night with my first dose. It has now been 3 months and I am starting to experience what I think may be rebound symptoms. About an hour after I take my nightly dose, I am experiencing extremely intense restlessness, anxiety-like symptoms and flushing, which lasts about half an hour. This has become unbearable. I stopped taking my nightly dose and these symptoms ceased.

I am actually a second year pharmacy school student and have done a bit of research (Clinical Pharmacology) and have read about the possibility of rebound symptoms. Does this sound like what I am experiencing? I would rather deal with the RLS than have to put up with these symptoms, which are absolutely unbearable.

Linda M.

You are not experiencing rebound as rebound occurs when the dose of Requip is wearing off (which should be about 6-10 hours after taking the dose). It is an end of the dose effect when blood levels of the drug have become too low to relieve symptoms. Your problem which occurs 1 hour after taking the dose is more a peak dose effect and I do not have any explanation for what you are experiencing as it is an odd reaction (but most likely related to the peak blood levels of Requip).

You should have started on Requip at .25 mg and increased to .5 mg or above only if symptoms were not adequately relieved by the lower doses. It may be helpful to reduce your dose and see if this still gives you relief from RLS symptoms and avoids this peak reaction effect.

Changing to Mirapex (or another class of RLS medication such as gabapentin or Lyrica) may also be helpful.

Sent: Wednesday, November 04, 2009 10:18 AM
Subject: RE: Rebound Symptoms with Requip?

Your explanation does make sense. I have discussed this with a couple of my clinical instructors and both of them feel that I would perhaps benefit by decreasing my dose back to 0.5 mg. I’m more inclined to go off of the medication all together and try something else. My sister has had success with Mirapex but as a student, I’m less inclined to try this for financial reasons. I think I’m going to experiment with MagOx and see what happens with that (I saw this mentioned on your RLS site).

Linda M.

Although magnesium gets a lot of anecdotal reports as helping RLS, most studies have not found any benefit from this mineral.

Sent: Saturday, November 07, 2009 2:19 AM
Subject: RLS meds

When my RLS gets out of control. Usually around 6PM. I take a hydrocodone 10/325 mg. I then have to lay in floor or walk for a while before it will stop. I am taking bupropion 300XL, clonazepam 2 mg, gabapentin 600 mg x2 daily, triazolam .25 mg for sleep. It seems I have RLS 24/7 and it controls my life. I have had to take the hydrocodone earlier in the day also and sometimes 3 times a day.

Could hydrocodone make me worse instead of better? It takes a while for it to kick in and help the pain I feel. How do I get off this drug without losing my mind? I try not to take more than 3 a day, sometimes 2 is enough. I feel so out of control most of the time.. I need a knee replacement and foot surgery but I am terrified because of this movement disorder.

What should I change or do to get more rest. I also have the feelings of needles in both legs most of the time. I use Bigel oil (farm store) and elastic around my legs for some relief. I am 69 years old and I can't bear the thought of this the rest of my life. My father also suffered with RLS and when he couldn't move around he didn't want live. they didn't know what was wrong at that time and was given drugs that made him worse except Valium.

My doctor wants to help and he says he know about RLS and he has tried me on many drugs. He just has not been able to find the right combination

TW

You might do better changing the gabapentin to Lyrica and slowly working up to a maximum of 300 mg twice daily. The hydrocodone might be improved by changing it to methadone, 5-10 mg up to three times daily. That combination would likely afford you much better control of your RLS.

Sent: Sunday, November 08, 2009 5:29 AM
Subject: RLS worsened by tramadol?

I am 56 years young. Unfortunately, I was prescribed tramadol for pain leading to a spinal fusion. I took it for 8 months. Since stopping the medication, I have had wicked RLS and am wondering if anyone has heard of tramadol withdrawal as a cause for RLS. And if this is the case, is it possible that it will go away? It has been about 3 weeks since the onset.

Peggy

It is very unlikely that your RLS was caused by taking tramadol. It is more likely that something else (perhaps even the spinal fusion?) triggered your RLS (which may have come on anyway) and that the tramadol was treating this problem (tramadol helps RLS symptoms quite well). Stopping the tramadol simply allowed your new RLS symptoms to become active.

You take Mirapex or Requip (or even gabapentin or Lyrica) to treat your RLS symptoms. An alternative would be to go back on regular doses of tramadol (just enough to control your RLS). There have been a few cases of tramadol worsening RLS (called augmentation) but this is less common and thus less of a concern.

Sent: Tuesday, November 10, 2009 1:36 AM
Subject: PLMD/ferritin

Does a ferritin level of at least 50 mcg/l play a role too if a patient 'only' suffers from PLMD (kicking his legs at night, waking up several times from it, getting better early morning hours and tired during the day, but not having the RLS sensations)?

Corrie

Less is known about serum ferritin and PLMD than with RLS (in fact, little is known about PLMD and almost anything else). Typically, PLMD are affected by the same things as is RLS so it would seem logical that low ferritin levels of below 50 (similar to RLS) would be correlated with worsened PLMD and treating this would be helpful but there is no literature (and very little if any clinical experience) to confirm this possibility.

Sent: Wednesday, November 11, 2009 2:17 PM
Subject: RLS

I'm 64 years old. I've had episodes of RLS since I was a kid, but too seldom to be a problem. 20 years ago I was diagnosed with hereditary hemochromatosis (iron overload).
Over the course of 2 years I was de-ironed with therapeutic phlebotomies once a week. During this process the RLS got worse and worse. It was a nightly regime of massage hot baths, walking the floors all night with very little restful sleep.

I've started with Klonopin, then went to Requip, and am now on Mirapex. Mirapex has by far been the best as far as side effects and augmentation are concerned.
At present I am in good physical condition and am very active . My fear is when I'm not as mobile , maybe during a long illness whether it will be tolerable or will I be on a Mirapex drip??

I can't help but think that a big share of my symptoms are psychosomatic. If I'm occupied in an interesting discussion or my mind is otherwise stimulated , the symptoms my not present themselves. On the other hand if I start thinking about it or am in a situation that normally brings on the symptoms I can bring them on merely by my thoughts. Are there any remedies such as acupuncture or hypnosis that might help me?

Richard B.

It is very likely that the therapeutic phlebotomies which are necessary to treat your hemochromatosis has helped deplete iron in the brain and worsened your RLS. Mirapex is a very good drug for RLS but do not be too concerned about situations such as post-surgery where you will sedentary as Mirapex in a somewhat higher dose will cover your symptoms or opioids (which are given post-operative anyway) eliminates RLS symptoms very effectively.

RLS symptoms have very little psychosomatic influence. What you are noticing is that mental activity (discussion, playing a video game, chess, solitaire, etc.) is very potent at ablating RLS symptoms. We advise airplane travelers to use this trick especially when the fasten your seat belt sign is on.

Hypnosis and acupuncture have not yet been demonstrated to be helpful for RLS.

Sent: Thursday, November 12, 2009 9:34 AM
Subject: RLS and High blood sugar

I am 30 years and suffer from RLS since I was a child. I tried Neurontin but it leaves me drowsy in the mornings. I am scared to try the DA agonist because I am terrified of augmentation. Literally TERRIFIED.

My symptoms do progressively get worse during the day and at night but I have them as soon as awake. I get an insatiable urge to crack my joints. Especially my ankles and knuckles. As it worsens then the feeling progresses to my neck and TMJ. The feeling is only ameliorated when I crack those joints and sometimes the urge is so great that my joints are sore from the constant cracking.

When I first started taking Neurontin it worked. It cleared my mind so much that I got a class high in my pharmacology exam (in dental school right now). It feels like the RLS occupies so much of my concentration that it gives the appearance of ADD. Unfortunately, Neurontin started making me drowsy. I tried Trileptal and it also made me drowsy.

I was wondering if anyone has seen any literature about RLS and hyperglycemia. I am going to have my blood sugar checked because I have notice that when I eat less I have less symptoms. What was interesting is a previous posting on Calorie Restriction. I am starting CR to see if it works but I am wondering if anyone has come across diabetes or hyper/hypoglycemia and RLS correlations.

Miguel

There is little known about the effects of high blood sugar and RLS. Many patients have reported that carbohydrates (especially refined ones) worsen their RLS but these are still a minority of RLS sufferers.

RLS may be more common in diabetics but then diabetes affects nerves everywhere in the body.

You should not be too afraid of augmentation as it occurs in a minority of RLS patients who take dopamine agonists. Furthermore, if you are looking out for the occurrence of this treatment emergent problem, you can get off the drug (you may need some opioids for a week) before symptoms become severe and you will be back to baseline within a week or so.

Sent: Sunday, November 15, 2009 4:13 PM
Subject: RE: RLS and High blood sugar

Any chance the agonist can help with concentration and focus since it is increasing dopamine?

Also the most troubling sign that I have had is constant aphasia for the last 10 years. Besides that I substitute the wrong words sometimes when I speak and when I write, I miss letters in a word or forget to write words in sentence.

I am wondering if the dopamine agonist will help me as the catecholamine (adrenalin) stimulants work for ADD patients.

The stimulants used for treating ADD do release dopamine but it is not clear at all if that helps in any way with their beneficial effects for ADD. If your RLS symptoms have been interfering with your ability to concentrate then using dopamine agonists to relieve the symptoms would help your concentration. Otherwise, dopamine agonists should not improve your concentration, aphasia or writing problems.

Sent: Sunday, November 15, 2009 3:34 PM
Subject: RLS and tinnitus enquiry

I have been diagnosed with RLS about a year back. Very recently I have developed symptoms of tinnitus. I haven't yet started any medication for RLS or tinnitus. I would like to know if the medication for RLS like Requip, Mirapex, Neupro, Neurontin can be taken for RLS without aggravating the tinnitus. Any medication for RLS which I should avoid for tinnitus.

Dinesh

Tinnitus is a rare side effect with any of the drugs used for RLS. You should be able to take any of the commonly used RLS drugs with little concern of making your tinnitus problem worse.

Sent: Tuesday, November 17, 2009 3:45 PM
Subject: Malaise the day before

I am a 38 year old woman and have had RLS for a couple of years. I started treatment with Requip and then Mirapex with limited success. My rheumatologist (I have an undifferentiated connective tissue disease) prescribed Topamax which works fairly well. I also recently started taking an iron supplement which also seems to help. However, when I am going to have a bad night, I can tell starting the morning before. I sneeze all day long, I am very cold (like need a sweater in summer), I am very tired (even if I slept well the night before) and I generally feel very poorly.

What do these symptoms have to do with RLS? Is there anything I can do at the onset to avoid having a terrible night (I already also take Lunesta and temazepam at bedtime)?

EM

There is no known relationship between cold intolerance, sneezing and feeling poorly and RLS. Increased fatigue may worsen RLS symptoms in a non-specific way but even this is quite unpredictable.

You can take Vicodin for those nights that you feel the RLS will worsen. As the Vicodin acts quickly (within 15-30 minutes), you can even wait for the onset of RLS symptoms to take this medication.

Sent: Wednesday, November 18, 2009 12:32 PM
Subject: RLS Help

I have suffered from RLS for about 7 years. I have tried everything, diet, supplements and exercise. My symptoms would start in my right calf. I found that once they started I could "bounce" my leg up and down until it was tired and the symptom would go away. However, many nights they would just move to my shoulders or forearms. Usually only one part of my body would be affected at a time.

I have now spent the last three weeks without symptoms. By accident I found something that has worked for me and I would like to share it with fellow sufferers. After some vigorous exercise I was pretty sore so I put Icy Hot on my leg to relieve the soreness. That night - no symptoms. Even though my leg is no longer sore, I have continued to use the Icy Hot and have had no RLS symptoms. Stopped one night, the symptoms returned.

I hope maybe this will help someone.

Jim A.

Sent: Wednesday, November 25, 2009 5:34 PM
Subject: RLS and St. John's wort

Do you know of (an overdose) of St. John's wort causing RLS ??

Peter from Holland

I have never heard of that before but anything is possible. Antidepressant drugs typically worsen RLS so St. John’s wort which does have some antidepressant effects may possibly worsen RLS but I have no experience or information of this drug and its effects on RLS.

Sent: Friday, November 27, 2009 6:32 PM
Subject: Requip "Vacation"

I have had RLS for many years and have been taking 1mg of Requip at 8:30pm and 1mg of Requip at bedtime along with 30 mg of Temazepam. at bedtime.. Lately I started waking up during the middle of the night with strong RLS symptoms. My doctor, who is a sleep specialist, recommended I take a vacation from Requip for 30 days. He prescribed 400 mg of Neurontin at 8 pm, 9 pm and at bedtime along with the 30 mg of temazepam.

I have had a terrible time going to sleep and am awake with aching legs until 2-3 am each night. Is there a better way to cope with this Requip "vacation" and does the vacation need to be 30 days?

Jack A.
Portland, Oregon

It is not clear that you need a drug holiday from Requip. That would be necessary if you were having augmentation (which is when the RLS occurs earlier in the day, spreads to other body parts such as the arms and gets more intense) but it does not sound like that is your problem. You might be experiencing tolerance (which occurs when you need a bigger dose to get the same response) but your description is not clear whether that is happening.

If the above problems are not the case, then increasing the Requip dose may be all you need. It that doesn't work out then the next step would be to add a pain killer (an opioid or tramadol).

When RLS patients do need to take a drug holiday from Requip (typically about 2 weeks works well for most situations), opioids are substituted for Requip and do a great job of keeping the RLS symptoms under control.

Sent: Saturday, November 28, 2009 7:03 AM
Subject: Re: Requip "Vacation"

I was not having augmentation from Requip but as you point out it would appear a larger dose should be tried.

What "range" do you prescribe Requip/ropinirole? Or more specifically, what would be considered a normal dosage coming off a "vacation" and what is the maximum dosage before taking the next step to an opioid?

Jack A.

The maximum dose for Requip is 4 mg per dose. If you do not get much more benefit as you approach that dose, it may be time to consider adding an opioid.

Sent: Sunday, November 29, 2009 10:56 AM
Subject: Re: Requip "Vacation"

My RLS normally "kicks in" between 8pm and 2am. Have you found any average timing factors that works the best for 2-4 mg? Currently I will start out with 1 mg at 7 pm and 1 mg at 10 pm.

Jack A.

Regardless of the dose, Requip starts becoming effective about 1-2 hours after you take a dose (add an hour if you take it with food). So, just time accordingly to make sure that it is active when your symptoms are starting to peak.

Sent: Thursday, December 03, 2009 11:43 AM
Subject: Re: Requip "Vacation"

For the last 3 nights I have taken 1 mg of Requip at 8:30 pm and my life has returning back to normal. Last night I slept from 10:30 pm to 6 am and did not wake up once. Not bad for a 83 year old guy!!! I can't thank you enough for your suggestions and information.

One last question! At 8:30 pm I take 400 mg of Neurontin along with the 1 mg of Requip. Then at 10 pm I take another 400 mg of Neurontin and 30 mg of temazepam. The Neurontin was originally prescribed to be used during my Requip "Vacation". Is there any reason I can not gradually eliminate the Neurontin? Also do you feel the temazepam is required??

Jack A.

Neurontin does help RLS symptoms so it may be working with Requip to help your RLS. It also takes 1-3 hours to "kick in" but the only way to know whether you need to supplement the Requip with Neurontin would be to stop the Neurontin (you will likely find out fairly quickly if you really need this drug). I would stop the 8:30 pm dose first and see how you do. Neurontin also tend to cause sedation as a side effect so it is possible that either or both of your doses may be helping you sleep. If you do manage to eliminate the earlier dose, I would then see if you can eliminate the second dose (and still sleep well).

If you manage to eliminate all the Neurontin, I would then see if you still need the sleeping pill, temazepam. This pill does not help RLS but does help you fall asleep and stay asleep. Taking this on a daily basis does expose you to a significant risk of tolerance/dependence on this drug. However, you may find that you need some sleeping pill with or without Neurontin to sleep well if you have chronic insomnia problem which may have been created by your RLS in the past.

Sent: Friday, November 27, 2009 9:21 PM
Subject: RLS not better with medications?

I am on a RLS "cocktail" but I find lately it is no longer working. I take 3/4 of a 1.5 mg Mirapex tablet. I am reducing my dosage gradually in hopes less will work better, 600 mg of Neurontin and 5 mg hydrocodone. And with all these drugs I still suffer for hours with pretty severe RLS until I might fall asleep out of exhaustion. Some nights it seems as if I don't sleep at all and am pretty miserable the next day. I am 68 years old, active and young for my age and have had RLS for about 10 or 11 years. For most of these years, I've been on a gradually increasing dose of Mirapex.

But now I am trying to reduce or even get off Mirapex, since you mentioned in a previous letter that it might be the reason my RLS is getting so much worse. Should I increase the Neurontin or the hydrocodone? And, if I do, will I constantly have to increase dosages if these drugs? I really don't know what to do. I try to be grateful for everything seeing the gift in even what seems like misfortune but this RLS is the worst thing in my life and its pretty hard to be grateful for it.

RGP

It is difficult to advise you based on what are telling me without going over you entire RLS history/treatment.

However, it may be that the Mirapex is causing augmentation problems and getting off it might be the best approach. For patients like you, I typically change to a more potent opioid like methadone while eliminating the Mirapex. Unfortunately, most doctors do not like to prescribe the schedule II opioids so you may have a problem getting adequate therapy.

Increasing the Neurontin is always an option but most patients tend to get side effects like daytime sleepiness/drowsiness which make the higher doses very hard to tolerate.

Sent: Saturday, November 28, 2009 9:34 AM
Subject: Re: RLS not better with medications?

I will get off the Mirapex gradually, maybe increase the hydrocodone to 10 mg, instead of 5, and then decrease it when I am off Mirapex. Would that work?

RGP

Although there is no correct way to do it (and other specialists have different approaches), I just stop the Mirapex cold turkey. Although this abrupt discontinuation causes marked worsening of RLS symptoms, it can be treated with potent opioids quite successfully. Tapering off Mirapex slowly causes less intense increase in symptoms but prolongs the suffering and need for stronger opioids (this is like comparing taking off a bandage by one strong rip versus slowly pulling it off).

Hydrocodone at 10 mg may be sufficient but more potent opioids like oxycodone or methadone work much better and will even take care of the severe RLS symptoms caused by sudden cessation of Mirapex.

Sent: Monday, November 30, 2009 10:31 PM
Subject: Biking and no RLS

My son and I have RLS. He figured out when he bikes for exercise he does not have RLS. I mentioned that to my neurologist, and she said she's discovered the same -- when she took up biking as a stress reducer, her RLS stopped. Then I started thinking back to when we lived in a valley and I was biking for maybe 10 minutes every day, hard biking, and I truly believe that was about the same time that I had the only remission in RLS I've ever had, in 36 years.

I can't wait to move out of these mountains and start biking again (I'm 67 now with bad lungs and can't do the hills). Can you please post this to see if other's have biked and have found relief or could try it?  It was awesomely wonderful to be without RLS and without drugs and sleeping the entire night and to sit and watch a whole movie or a whole Sunday sermon.

Mary

Studies have found that mild to moderate regular exercise helps decrease RLS symptoms. However, vigorous exercise often worsens it.

Sent: Friday, December 11, 2009 8:25 PM
Subject: Biking & Quinine

I'm sorry not to see the blurb about biking and exercising having a positive effect on my neurologist, my son and myself in regards to our RLS. Even if it didn't work, still, what harm would any exercise do any of us? If t worsened the symptoms it would've helped the weight and heart; if it helps RLS, then great! But people have to hear about the possibility.

Secondly, I've had RLS for 38 years with one remission, and am sorry to see you so easily discount good old quinine. Even if it was a placebo, why not say some folks find it helpful, others do not vs. "it does not work."

It does, my friend, it does. Daily I take upwards of 4 mgof Requip plus half a hydrocodone and still, about 1-2 nights per week I have to supplement the meds with about 6 oz. of tonic water. Twenty - 30 minutes later and my RLS starts to drift away.

Is tonic water going to hurt people who try it??

Mary

Studies have shown that exercise does help RLS. These studies (done mostly on women) have demonstrated benefits from mild to moderate regular exercise which is what we do recommend (for both RLS and other health benefits). However, many (but not all) RLS patients notice that vigorous exercise (and of course, this is defined very differently from individual to individual) tends to worsen RLS symptoms. For those patients, the RLS symptoms can be so severe as to make their life miserable.

Quinine has helped very few RLS patients just as many placebos such as sleeping with soap seems to help a few patients. The amount of quinine in tonic water is negligible compared to one quinine pill (you would need several gallons of tonic water to get a therapeutic dose equal to one quinine pill). No harm in doing so as long as you realize that it is not the quinine that is helping you.

Sent: Monday, November 30, 2009 11:23 PM
Subject: RLS??

I am a 24 year old female. I have not been diagnosed with RLS, but I feel that may be what is going on. I wanted to describe my symptoms to you guys and get a second opinion. I began feeling extreme discomfort on the back side of my legs behind my kneecap when I was about 4 months pregnant with my first and only child, at the age of 22. These pains or feelings of discomfort would always begin at night when I try to lay down. I have to elevate my legs on at least 2 pillows to make the discomfort go away.

However, this isn't really helping me anymore, and I am tossing and turning all night. I just can not get my legs comfortable to save my life. I don't know why this is happening, and hope to God there is a remedy. My doctor has prescribed me cyclobenzaprine to take before bed, but I generally stay up later at night, so when I need to wake up in the mornings I have a lot of trouble after taking this medication.

Summer

Your symptoms are very suggestive of RLS. If you also have an irresistible urge to move your legs when the symptoms occur and if moving them or walking helps relieve these symptoms then you definitely have RLS.

Cyclobenzaprine (Flexeril) is not an RLS drug but rather a muscle relaxant and it does not help RLS. This drug has a long half-life and next day drowsiness is very common. If you do have RLS, then Requip or Mirapex are currently the drugs of choice and should help relieve your RLS symptoms.

Sent: Monday, December 28, 2009 12:01 PM
Subject: RE: RLS??

Thank you very much on your response to my email. I took your advice and told my doctor about my research, and what I thought the problem was. Her first step is to check my blood for the ferritin levels in my iron; which the results are in saying is low. So she has advised me to take over the counter iron vitamins for 6 weeks and see what my results are. Does this sound right to you guys?

I started taking the pills after my visit with her last week, and still feel the same amount of discomfort. I am just worried that I have to continue getting no sleep at night for another 6 weeks, and this has already been going on for a year?? I just feel like I am about to lose my mind, I am so tired.

Summer

Checking a serum ferritin level is a good idea to see if iron therapy is helpful for your RLS. However, it may take months to get benefits from oral iron therapy and most patients cannot increase their iron levels with oral iron sufficiently to help their RLS. In the meantime you should be on RLS therapy to help your RLS symptoms.

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor.

Sent: Tuesday, December 01, 2009 8:13 PM
Subject: Differences in Opioids

Can you please explain the differences between hydrocodone or oxycodone, Vicodin, and Percocet as far as benefits for RLS? Are they all just opioids in the same class of drugs? Is one preferred over the other one as far as opioids for RLS? I experienced severe teeth grinding (bruxism) when taking hydrocodone so I discontinued it and just take Percocet now. I have not tried Vicodin.

Can you please go over the lowest recommended starting doses of Requip and Mirapex? I am normally very sensitive to medications of any kind but want to try these. Lastly, I have tingling and discomfort in my left leg ALL the time, but not the right leg. Could this be part of the RLS symptoms?

Carol F in Texas

You are correct that all opioids are fairly similar in that they all work on the same receptors. However, they do vary considerably in potency. Oxycodone is about 10% more potent than hydrocodone but seems to work about 20-30% for RLS (my personal observation and I do not have any explanation for this phenomenon). Vicodin and Percocet are simply combinations of hydrocodone and oxycodone respectively with acetaminophen (Tylenol). Since acetaminophen does not help RLS, there is no need to use these combinations to treat RLS as you are exposing the RLS patient needlessly to this drug that can only cause harm without any potential benefit.

Both Mirapex and Requip can be started at 1/2 tablet of their lowest available dose which is .125 mg for Mirapex and .25 mg for Requip.

Since your leg tingling does not come and go with your RLS symptoms (better with movement and worse with rest), it is not part of your RLS problem.

Sent: Tuesday, December 01, 2009 10:44 PM
Subject: RLS, Tinnitus and back pain

I am writing again. Like I said before I have been suffering from RLS from the past one year. I also suffer from tinnitus and back pain. Of late my back pain is getting worse. My wife who is also a GP wants to start me on Lexapro 10 mg which I think is an anti-depressant. But I have my own doubts about this medication. I have also taken an appointment with a neurologist which is the month of April.

But I don't think I can wait until April. Can you suggest me any drug for RLS and some medication for my back pain which will not aggravate my tinnitus. I believe lot of NSAID drugs aggravate tinnitus.

Dinesh

Be careful of taking Lexapro as it is known to worsen RLS. If an antidepressant drug is needed, then Wellbutrin is the best RLS friendly one.

Neurontin or Lyrica are both drugs that may help back pain and also help RLS so you may want to discuss using one of them with your neurologist. These drugs should not aggravate tinnitus.

Sent: Sunday, December 06, 2009 1:35 AM
Subject: Re: RLS, Tinnitus and back pain

I was able to get a consultation with a neurologist finally. He has also diagnosed me with peripheral neuropathy. He has prescribed me Sinemet. But I am concerned about taking this medication due to the problem of augmentation. I have also spoken to a psychiatrist who advised me to take Klonopin. I have not taken any medication for RLS till now.

Could Requip or Mirapex take care of the RLS and also alleviate the peripheral neuropathy? Or do you think Klonopin would be better choice as advised by the psychiatrist?

Dinesh

My 2 least favorite drugs (which are amongst the most commonly prescribed drugs for RLS by those who are not very expert treating the disease) for treating RLS are Sinemet and Klonopin. You can read my many responses concerning the use of these 2 drugs.

Requip and Mirapex will help RLS but not treat peripheral neuropathy (which is often associated with RLS). For the neuropathy, we commonly use gabapentin (Neurontin) or Lyrica.

Sent: Saturday, December 19, 2009 9:21 PM
Subject: Re: RLS, Tinnitus and back pain

My psychiatrist has started me on Klonopin. It is helping with the RLS and to a certain extent with the neuropathic pain. He said he would like to review after 3 months. I would like to know if Klonopin would be a good medication for neuropathic pain. I would also like to know if neuropathic pain gets worse with time and needs aggressive treatment with other medication like Neurontin.

Dinesh

Klonopin actually does not treat the neuropathic pain. However, by decreasing your reaction to neuropathic pain (anxiety) it may make you feel more comfortable with the pain thus reducing your perception of the uncomfortable symptoms. Klonopin is a very commonly used drug by most psychiatrists.

Whether the neuropathic pain gets worse depends upon the cause. Most neuropathic pain is caused by nerve compression (like from a herniated spine disc), diabetes or idiopathic (unknown cause). Unless the cause of the problem is addressed, the symptoms typically get worse with time. Drugs like Neurontin or Lyrica do not treat the cause of the neuropathic problem but just decrease the symptoms.

Sent: Friday, January 01, 2010 11:11 PM
Subject: RLS

I am taking Klonopin one half of 0.5 mg one in the morning and one before bedtime for the past 2 weeks. My psychiatrist wants to increase the night time dosage to 1 mg . But I am continuing on the same dosage of half of 0.5 mg one in the morning and one before bedtime. Do you think this dosage is appropriate or if I should increase the dosage as advised by my psychiatrist. For how long Klonopin would be effective. Is it possible to use for a few years without increasing the dosage. What is the maximum safe dosage of Klonopin.

I also enquired with my psychiatrist about drug holidays. But he said why bother about drug holidays now. Have a good time and come back after 3 months and then I will tell you about drug holidays. Do you think I should start drug holidays right away. Can you tell me how often I should take drug holidays.

One more interesting thing I would like to tell you. My neurologist and psychiatrist has never heard of the drugs Requip or Mirapex. When I went for a consultation with my neurologist he gave me a piece of paper and asked me to write down the names of Requip and Mirapex

Dinesh

It is beyond the scope of this site which deals with RLS to discuss the use of Klonopin for psychiatric problems.

It is inconceivable that a neurologist would not know the names of Requip and Mirapex as they have both been used since 1996 to treat Parkinson’s disease. If you do not live in the USA, the these drugs may have different brand names (which your neurologist would not necessarily know) but they should know the generic names of ropinirole and pramipexole.

Sent: Thursday, December 03, 2009 11:05 AM
Subject: Dilaudid

In case you have not heard, they have stopped making Dilaudid and there is only one company now making the generic. I cannot take the generic so after six years with no increase of dose I must find something else for my RLS.

Barbara age 70 in TX

That certainly makes treating your RLS more difficult. However, there are several other potent opioids and you have a good chance of finding another one that may help you.

Sent: Sunday, December 13, 2009 12:57 PM
Subject: Frustrated and Angry in Minnesota

I'm from MN. Abut 18 years ago I had a scope done of the inside of my knees because I have severe osteoarthritis. Beforehand they gave me a spinal anesthetic. When I began to come out of it my first recollection was I had bugs crawling all over my legs. I began to thrash around. The nurse told me I had to hold still and not move my legs. I could not help it because the sensation was horrible. Once they got me up it quit just like that. I never had a problem again with "bugs"

Well fast forward to 2006. My knees were totally shot. After going to about 20 orthopedic specialists who all told me I was to young for knee replacement I finally found a doctor who did not go along with that mentality. He was considered one of the top 20 orthopedic specialists in MN. I had BTKR done and once again was subjected to a spinal anesthetic. After months of physical therapy and going to the doctor for blood checks to make sure the blood thinner was at the correct level I was doing fine and only needed a pain med occasionally.

All of a sudden I noticed the bugs in my legs again but it was rare and only lasted a few minutes. As time went on the pain in my right knee was getting worse. I went back to the orthopedic surgeon telling him the pain was back and getting worse. I was basically brushed off and given a dose pack of prednisone. It did not help the pain at all. I also noticed the bugs were more frequent. One night sitting watching TV there was an ad for Requip. I almost fell off the chair. My gosh that is what I have I thought. I made an appointment with my doctor who is an internist.

He gave me a prescription for Requip. That night I took one...and prayed for death. Within 30 minutes I had the mother of all migraines along with non stop vomiting which lasted all night. I was lying on the floor holding my head screaming in pain and was sure I was having a cerebral hemorrhage. The following night I cut the dosage to a quarter of what I was told to take and the same thing happened. My doctor then prescribed Mirapex ...same outcome. A few nights later my legs were literally driving me nuts at bedtime and I was in a panic. I remembered I had a few Vicodin leftover so took one and Walla! just like that the bugs died and I slept all night.

My knee had gotten so bad by this time I finally went to another orthopedic surgeon who discovered after tons of X-rays and blood work which showed nothing and finally had to go in and do a scope (another spinal) that the first surgeon had overfilled the tibia with cement. When they got me out of bed it overflowed, hardened and chewed up the prosthesis totally destroying the plastic part of the prosthesis. The only thing to do was to replace it entirely ...sigh. After yet another regime of PT etc. everything was fine but the bugs were back nightly. I told my new Ortho about the RLS and not having any luck with meds but that the Vicodin worked great. He agreed to give me an ongoing prescription for it as he had a sister who had RLS so kind of understood. Several months later he had to replace the other knee as well but didn't bother with X-rays as he now knew what the problem was.

Just last week he told me he can no longer write anymore prescriptions for Vicodin. My regular doctor whom I just quit Friday refuses to let me use it even though I take just one at bedtime. He gave me a prescription for Clonazepam (sp) and it turned out to be worthless...back to Vicodin.

I am at wits end here and tired of being a Guinea pig. Hey I told my doctor if it ain't broke why fix it?

If anyone out there lives in Minnesota please contact me if you have a doctor who will listen to you. I've been to the RLS Foundation web page but found no help. I have an appt with a Neurologist but can't get in until January.

I've come to believe old doctors listen much better than this new breed in their 30's and 40's.

Sherry

Since you can’t take dopamine agonists (Mirapex and Requip), then opioids are a reasonable choice for your RLS. You might want to try the anticonvulsants (Neurontin, Lyrica) as they may also help and if they don’t cause you any side effects, you will find doctors much more willing to write prescriptions for these drugs.

However, if opioids like Vicodin are the only drugs that work for you, then you should be able to take them indefinitely and safely as long as you are monitored carefully. Although Vicodin is a good RLS drug (at least the hydrocodone part of it), it also contain acetaminophen (Tylenol) which does not help RLS so can only cause possible trouble down the line. You can get pure hydrocodone from a compounding pharmacy (they will make it up for you) or you might try Darvon, tramadol or the potent opioids like oxycodone that come in a pure form.

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor. Either of these books will support the use of opioids for treating RLS and thus take care of your doctor’s concerns.

Sent: Tuesday, December 15, 2009 8:58 PM
Subject: Re: Frustrated and Angry in Minnesota

I have the generic version of Sinemet called Carbidopa & Levodopa. The doctor said it's completely different than Requip and Mirapex but not sure how but I just took one and am praying my supper stays with me but I am really afraid of getting deathly ill again.

Sherry

Sinemet is not a drug that is prescribed on a daily basis for RLS by almost all RLS specialists (and should be likewise for all doctors who treat RLS). It causes worsening of RLS (called augmentation) in over than 85% of patients who use it on a daily basis (you can read more about this problem on our website or in my books). Otherwise, the side effects may be somewhat similar to the other dopamine drugs that you have already tried.

Sent: Monday, December 14, 2009 6:45 PM
To: mjb
Subject: re: augmentation

How will I know if I am dealing with augmentation and if that happens what steps do I take? Also what is a "drug holiday" and of what benefit is it?

If I take an opiate how can I not become addicted to it?  Say if, I would only take it at night, would I still become addicted?

After surgery, when you are taking an opiate for the pain, when you stop it, (I am also taking .25 mg of Mirapex 2 x day and .5 of Klonopin) will the RLS get worse and what do you do??? I'm afraid to increase the Mirapex because I think I was started on a higher dose. Instead of .125, I was started on .25 2 x day.

I have learned so much about RLS, but there always seems to be so much more I need to know.

BETTY/WV

Augmentation occurs a few months to 2 years after starting a dopamine agonist like Mirapex. Symptoms get worse, extend to other body parts, occur earlier in the day and respond less to medication typically requiring a higher dose which becomes less effective.

Drug holidays are not really a medical/scientific defined procedure. We do use them with dopamine agonists (at times) and with opioids. However, they are somewhat complicated and vary from drug to drug.

Under proper supervision, it is very rare (at least in my hands) to have problems with addiction to opioids. When used at the lowest dose to relieve RLS symptoms, they are very effective and safe to use even in the long term.

Sent: Sunday, December 20, 2009 9:56 AM
Subject: Re: tramadol

I recently had surgery for a knee replacement. I was given Percocet for pain, and it really helps also with the RLS, I also take Mirapex and Klonopin. My neurologist is very touchy about me taking opioids. If I wean off the Percocet and replace it with tramadol how do I go about it? And how much tramadol can I take in a days time??
I already have tramadol that my family doctor gave me. I'm afraid that when I go completely off the Percocet my RLS will get worse.

Also, do opioids affect the heart in any way. I have cut myself down to 1 Percocet only at night. I have read your feelings on RLSers taking opioids and I agree. But its a battle with a doctor who doesn't agree. My family doctor agrees with you. I don't like the idea of taking acetaminophen every time I take a Percocet, since I don't need it.

BETTY/WV

You can get oxycodone without the acetaminophen so you don’t have to take Percocet. As far as how to switch over, there is no fixed way to do this as everyone’s response to pain medication is quite different.

Typically, it may require 1-2 tramadol 50 mg to replace one 5 mg oxycodone. The maximum dose of tramadol per day is 100 mg taken up to 4 times per day.

Sent: Monday, December 14, 2009 8:48 PM
Subject: info

My physician is a new doctor, from Africa, young, and does not seem to take my RLS very seriously. I am not sure what are the reasons behind her disbelief, but I had a hard time getting Sinemet from her and thus the search for a better medicine led me to your website.

The Sinemet is not working well at all, I have rebound I guess it is, as it starts earlier and earlier and does not respond to the medicine much any more, even though I have increased from half to 2 pills.  Anyway, I need to have good info to bring to her so I can get some relief.

Here, it is in the winter we get RLS, the onset of the cold weather I believe may have something to do with it. My sister who lives on the west coast, north of you in British Columbia, is suffering exactly the same as I am here in Manitoba.

Interesting, eh?
Sandy T.

You are experiencing augmentation from Sinemet which occurs in over 85% of RLS sufferers that take Sinemet (which is why we do not recommend that RLS patients use this drug on a regular basis).

RLS has a very strong genetic component with 60% of close relatives suffering from this problem so your sister’s RLS problems are actually quite expected.

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor.

Sent: Thursday, December 17, 2009 4:25 PM
Subject: RLS / estrogen (ANGELIQ)

I went for 2 years in my early 40’s with pain in my legs and could not sleep. I have never been a great sleeper but this was the worst it had ever been in my life. I was too embarrassed to talk to my doctor because I was worried that they would think I was crazy.

Each night I took six Tylenols – four Unisom’s – 4 Aleve and it still did not let me sleep more than 3-4 hours an night. I was a walking zombie. I finally went to my doctor and the reaction was….. of course you had RLS. Great news… there is a name for it.

She gave me Requip and it has been pretty much in check for the last 5 years. I think I have built a tolerance and we have been trying to switch to different medications. I have been taking a combination of Requip and Ambien.

Three months ago, I went to by OBGYN doctor and told her I know I am starting menopause. She prescribed Angeliq. For the first two weeks of taking the medication, I feel asleep without pain and without any medication – for the first time in probably 10 years. It seems to go thru cycles now where it works some days and not others now.

Has anything been identified between RLS and estrogen therapy?

Kathy

It is not well understood but well known that hormones do affect RLS symptoms. Many younger women notice that their RLS symptoms cycle with their menstrual cycle. Going into menopause often changes RLS symptoms (for better or worse) and hormonal therapy (such as you are doing) can profoundly affect RLS. The problem is that the effect can be good or bad and varies considerably from patient to patient. Luckily, this has worked out well for you.

Sent: Monday, December 21, 2009 4:32 AM
Subject: Oxycodone for RLS?

I have written to you before and really appreciated your help but I am having problems again. I recently had some repair work done on my right knee and have been told that I have neuropathy in my left foot but I am not sure that is my problem. I feel like my leg is in a vice starting just above my foot and about halfway up to my knee and also feels numb. When I get RLS in that leg it really is bad.

Anyway, I am taking 1 mg of Mirapex around 2 :00 pm along with one 300 mg Neurontin another 1mg Mirapex and 2 Neurontin pills before bed. My RLS has really been bothering me every day off and on. I find that if I take oxycodone for pain, it seem to help my RLS. If it is helping, should I stop taking the Mirapex and Neurontin? I noticed that oxycodone is one of the medications that you advise for RLS.

I was wondering the dosage that you prescribe for some of your patients? My only problem when taking this is that it causes constipation. I would appreciate it if you could give me some advice.

Betty H.

You could stop taking the other drugs, but then you might need a higher dose of oxycodone than otherwise. The dose range of oxycodone varies from 2.5 mg (1/2 of a 5 mg tablet) to 10 mg up to 3 times a day if needed. The lowest dose that works is the best dose (that should decrease problems with constipation).

Sent: Monday, December 21, 2009 3:07 PM
Subject: Possible drug interaction between Requip and Baclofen

I take Requip 2 mg for my RLS, oxybutynin (Ditropan) 10 mg for bladder control and was recently put on the muscle re laxer, Baclofen 10 mg. I took all three medications at the same time and shortly thereafter had a loss of equilibrium and my muscles in my legs just wouldn't coordinate and I collapsed on the floor. I was still alert but dizzy and felt unable to get up. Shortly after collapsing my bowels released and I had copious diarrhea.

It took about 2 hours before I was able to function with any normalcy. That time I didn't connect the episode with a drug interaction. I thought perhaps it was a virus with the inclusion of the bowel problem. The same thing happened again 2 nights ago, after taking the medicines at the same time. I was standing up wrapping presents and suddenly got dizzy and collapsed to the floor again followed by copious diarrhea. There was one other occasion a week ago that I had taken the muscle re-laxer earlier and then later took the Requip because I was going to a basketball game and didn't want to be bothered with RLS symptoms. I had not taken the oxybutynin yet.

I found that I became uncoordinated and drunk, unable to walk straight and needed to hold onto things. My thought processes were diminished as well. When I called the pharmacy about there being a drug interaction between the 2 medications they said none was indicated, other than possibly increasing sleepiness. I would like to know your take on this as I still feel as if there is some interaction going on with these medications. It felt almost like there could have been some vagal nerve stimulation going on as well with the diarrhea episodes.

Misthula B.

All the drugs can cause sedation which may be causing your problem. However, you might also be getting low blood pressure problems from these medications taken together. There are no other known interactions between your medications but of course, anything is possible.

Sent: Tuesday, December 22, 2009 2:37 PM
Subject: Severe RLS symptoms

I have severe RLS and have had it since I was a teen. It is a problem 24/7, unlike most that only suffer at night, while at a movie or on a airplane.

I'm 40 now and my Dr. has prescribed APO-LEVOCARB 100/25mg. I take 4 pills at night and then have to take 2 more around 4 am or 5 am since my legs wake me up. I could easily take many more throughout the day, but I'm not too sure how much I could be taking to give me relief all day long. Is there a maximum dosage per day, or is there a more effective way to treat severe RLS?

Sean

You are currently taking the generic form of Sinemet. This is a drug that works well for mild RLS when taken on an intermittent basis. However, most RLS specialists no longer use this drug on a daily basis for more severe RLS cases as it causes augmentation (worsening of RLS due to taking this drug) in most patients who use it. This typically results in needing more and more Sinemet which works less and less well.

Currently, the drugs of choice are Mirapex or Requip. If these don’t work, then there are other classes of drugs that can be used.

Sent: Wednesday, December 23, 2009 8:24 PM
Subject: Mirapex and Sinemet

Does either one make your hair fall out?

mrf

Although anything is possible, hair loss would be an unusual side effect from these drugs.

Sent: Wednesday, December 23, 2009 11:46 PM
Subject: Lyrica for RLS?

My doctor wanted me to get off Lyrica, since I was taking about 250 mg a night, and about 3000 mg. of Neurontin for RLS. I gradually went off Lyrica, 50 mg. less each week. It was fairly easy, until I stopped it. For three weeks I didn't take any, and my legs were fine with just the Neurontin. I thought I would never take Lyrica again. Then I started having an occasional problem, with my legs waking me up once in a while. Then it became every other night, and now it is every night.

So I am taking 100 mg. of Lyrica every night now, and am afraid I may have to go back to taking 250 mg., when I don't want to take any! I am mystified as to why I was just fine for 3 weeks, and am now getting worse and worse again. Could you tell me if you have any ideas of what is going on?

Irene O.

In recent studies, the dose of Lyrica used to treat RLS was 300 mg every evening. You do not state if you were getting side effects from Lyrica, so it is not clear why you were so eager to stop this drug.

It also appears that you are taking Lyrica with Neurontin which is a very uncommon combination as they are both anticonvulsant drugs and thus work similarly,

I have no explanation as to why you did well for a few weeks then had trouble again. There may have been other factors involved (other medications, stress, anxiety, etc.) that might explain this phenomenon.

Sent: Thursday, December 24, 2009 1:28 PM
Subject: Retinal Pathology in Lab Tests

I found the following information in the dosing instructions for Mirapex. I take .5mg of Mirapex and it completely controls my RLS symptoms.

I currently have early stage Macular Degeneration in both eyes and an epi-retinal membrane covering the retina in my left eye. The membrane is transparent and has not caused significant problems so far but the retinal specialist said it was beginning to pucker. When I read the text below in the dosing instructions, I was alarmed that it may exacerbate my AMD symptoms. Do you think this is a real concern for me and if I should discontinue Mirapex therapy?

Denny Crane

++++++++

Retinal Pathology in Laboratory Rats

Pathologic changes (degeneration and loss of photoreceptor cells) were observed in the retina of albino rats in the 2-year carcinogenicity study. While retinal degeneration was not diagnosed in pigmented rats treated for 2 years, a thinning in the outer nuclear layer of the retina was slightly greater in rats given drug compared with controls. Evaluation of the retinas of albino mice, monkeys, and mini-pigs did not reveal similar changes. The potential significance of this effect in humans has not been established, but cannot be disregarded because disruption of a mechanism that is universally present in vertebrates (i.e., disk shedding) may be involved (see ANIMAL TOXICOLOGY).

It is very difficult to extrapolate animal data to humans although often that is all we have to go on. I have not yet heard of this issue even with the higher doses used for Parkinson's disease. Since you already do have retinal problems you should have some concern. However, the best thing to do is check with your retinal specialist and follow his/her suggestions.

Sent: Sunday, December 27, 2009 7:19 AM
Subject: Mirapex and weight gain?

I have had restless legs for years. My doctor prescribed Mirapex about 9 months ago. My dosage was increased to .5 mg taken nightly. I've also taken 100 mg of Zoloft for the past four years. The Zoloft caused weight gain but the Mirapex sent my weight soaring! I've gained 15 pounds since starting the Mirapex with little help for my restless legs. I gradually weaned myself off the Zoloft and Mirapex and have been off these two medications for almost four months.

I have seen a compounding pharmacist and am taking supplements including magnesium which has greatly helped my restless legs. I've never felt better, however, I can't lose any weight. I've always been slender with a great metabolism which was affected by the Zoloft. I've really cut back on my food intake and am exercising regularly but my weight won't budge.

Prior to starting the Mirapex I was able to lose weight while on Zoloft by just cutting out sweets. I now feel like a switch has been turned off in my body after taking the Mirapex for only five months. Do you have any suggestions?

Jennifer

As you may already know, Zoloft typically worsens RLS so you should do better without the drug.

There is no explanation related to the drug Mirapex which is known to cause weight gain. However, once you stop the drug the weight gain problem is over. What likely explains your problem is that it is easy to put weight on but very difficult to get rid of the weight. Being female makes it more difficult to lose weight and if you are over 40, the weight will be even tougher to get rid of. Once fat cells are created, they fight to stay there so the weight you put on is super hard to get off (especially being female and if you are over 40).

Sent: Thursday, December 31, 2009 8:18 AM
Subject: Xanax and Mirapex

So glad I found this site. I currently take .25 mg of Mirapex for RLS. This almost always works if I take it late afternoon, or early evening. I have recently been diagnosed with a recurrence of breast cancer and know that I may need to take Xanax (alprazolam .25 mg, or less) for anxiety, as I begin treatment. Can I continue to take the Mirapex every day, even on those days I take Xanax? Can the two drugs be combined in the same 24 hour period?

Marsha

Typically, Mirapex and Xanax can be taken together. The only concern would be if Mirapex makes you sleepy (which occurs in a small percentage of patients) then adding another sedating drug like Xanax might increase the level of drowsiness/sleepiness.

Sent: Monday, January 04, 2010 11:18 AM
Subject: Anesthesia & Mirapex

I am currently taking 0.25 mg Mirapex for RLS and I am scheduled to have surgery next week. Is there any known problems with anesthesia and Mirapex?

Marsha

No, but the surgery might worsen your RLS especially if you can’t be active after the surgery. However, if they give you pain medications (opioids) that should take care of both the post-operative pain and the RLS.

DISCLAIMER

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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