Patient letters on RLS symptoms and remedies- Page 97

 

Kicking RLS/PLMD Patient



Sent: Saturday, June 18, 2011 8:04 AM
Subject: Requip and Social Phobia

I am a 46 y/o woman and just recently diagnosed with RLS, which I now realize I've likely had most of my life. My doctor prescribed Requip and Ambien for my sleep dysfunction. Words cannot describe how amazingly well this treatment has worked for me (except maybe miracle)! I am still titrating up my dose and am currently at 1.5 mg on my way to 2. I've had some pretty unpleasant nausea and some vomiting, but not willing to let that be a deal breaker so far.

I wanted to share with you a very welcome side affect that I was COMPLETELY surprised and even shocked to feel. I couldn't find much information to explain this, but my Social Phobia is 99.9% better on Requip. Truly amazing. I am so much more comfortable in my own body it's hard to explain. My quality of life has improved immensely and I am so grateful.

I'm trying to keep this brief, but here is my concern: I'm not to my full dose yet, but already feeling augmentation coming on pretty strong, first at 8:00pm now at 7:00pm.
I've read many posts about this and the usual advice is to discontinue or switch or drug holiday. As you can imagine, I don't WANT to stop Requip because of the considerable benefit I'm receiving for the Social Phobia. I do not want to lose that. Any suggestions you may have would be greatly appreciated.

Kari

A Medical Reply

The first question that I have is why are you increasing the dose of Requip if you already are feeling well and don't have any RLS symptoms? The goal is to find the lowest dose that relieves your symptoms! Going higher only causes more side effects (like nausea) and increases the chances that augmentation will occur.

It is very possible that decreasing your dose of Requip may improve the augmentation problem. If not, find the lowest dose that has some significant effects on the RLS symptoms and consider adding the new drug Horizant (you may even do very well on this drug alone and be able to drop the Requip if the Social Phobia problem does not come back).

As far as the nausea problem, reducing the dose will help but taking it with food may also solve that issue (but be aware that taking it with food will delay the onset of action by about an hour so take it earlier).

A  Reply from Kari

Sent: Saturday, June 18, 2011 6:12 PM
Subject: Re: Requip and Social Phobia

Thank you for your quick response. I'm increasing my dose because that was the schedule my doctor gave put me on, starting at .25 mg and increasing by that amount each week until 2 mg. So I was just blindly doing that, assuming I was getting to some necessary level.

I don't recall him saying to level off when i felt relief, but it makes perfect sense, duh right? And thank you for the information about the new drug!


Sent: Sunday, June 19, 2011 10:42 AM
Subject: Tramadol

I use tramadol 50 mg 4 or 5 nights per week to supplement my other RLS meds and have very good results with it. Yet I worry about becoming tolerant which is why I don't take it every night or in higher doses.

In your book and also on this site you seem to advise tramadol to be used intermittently, yet in the patient letters section I feel you are saying it is OK to use nightly. I sure would like to use it every night, and on occasion at higher doses. Would you just clarify this point for me?

John V.

A Medical Reply

At doses that we normally use for RLS, most patients will not have any issues with tolerance so taking it every day should not be an issue. You dose is of course very low and definitely qualifies you for the everyday dose.

Patients taking higher doses (like 1-2 tablets every 6 hours) for more severe RLS may develop tolerance (this is typically just a small percent of users but obviously poses a distinct risk) or even augmentation problems.

This dose issue likely explains why you have noticed different explanations for using tramadol.


Sent: Sunday, June 19, 2011 10:43 AM
Subject: Vicodin with Requip?

I have been taking Vicodin for about 4 years for RLS. It is a miracle. I can be a normal person-sit with my family, ride in a car, even go to movies. However lately Iíve been having to up the dosage and my doctor wants me to switch to Requip. My problem is that the starting dose is so low that there are no results and when I take that and not the Vicodin my RLS is 100 times worse. Can I take both and lower my Vicodin and raise my Requip at the same time?

Leslie L.

A Medical Reply

You do not say what dose of Vicodin you were taking (how many mg and how many times per day). However, we often do give both drugs together and it may be helpful to take Vicodin while waiting to see what dose of Requip will cover your symptoms.

Although Requip works well for most RLS patients, your initial reaction may indicate that it may not work for you. However, some patients do need to get to a higher dose before this paradoxical worsening does not occur anymore and it then starts helping.

A  Reply from Leslie

Sent: Sunday, June 19, 2011 11:28 PM
Subject: RE: Vicodin with Requip?

I take 1 Ĺ Norco 7.5-325 about 8:30- 9:00 and another at about 12:00 before I go to bed. None of the other more natural remedies work for me. I eat a banana every day. OJ for breakfast and at night. Very little or no processed or fast food. I have taught exercise classes for 20 years and as long as I donít up my workout or teach heavy weight training or cycle classes there is no effect on the RLS-upping it makes it worse. My worry is that now I am starting to get RLS symptoms in the afternoon-especially if my allergies are acting up and Iím kind of drowsy. I take Claritin D almost daily for allergies.

I would like to get off ALL meds and see if I can handle it. Is there anything that my doctor could give me that I could use to wean myself off of the Vicodin? I am extremely scared of the Requip and have heard horror stories about it. I would rather try and get off everything. Maybe now that I am past menopause it wonít be so bad. Do you have any suggestions>

Leslie L.

A Medical Reply

I understand your concerns with Requip as it is becoming more and more common to see people in trouble even after years of doing well on the dopamine agonists. As stated before, with your initial paradoxical response, it is even more likely that you will join the ranks of unhappy dopamine agonist users.

Hydrocodone is not the best RLS opioid as it does not last very long (4-6 hours at best), it is only moderately potent and it contains acetaminophen (Tylenol) which does not help RLS and thus can only cause harm (although low risk of course). I would recommend a better opioid like methadone (at low dose) but most doctors are not familiar enough with this drug and thus do not like to prescribe it (and from the sounds of your letter, you likely would not like to use it).

The new drug Horizant is another good choice as it is now available as is Lyrica.

Natural remedies unfortunately do not work for most. You should have your serum ferritin level checked as low iron stores are associated with RLS and then treatment with iron may be helpful.


Sent: Sunday, June 19, 2011 12:20 PM
Subject: Starting Over

I am a 49 year old female who has suffered with RLS since the age of 16. For at least the last 15 years, my RLS has made it difficult to live or even desire to. I have used your site to guide some doctors into treatment which has helped some at times. I have severe depression which I believe is a result of RLS which makes it difficult for me to continually pursue treatment - its exhausting and I'm exhausted. However, I feel I need to start over and try one more time.

Current symptoms/situation: RLS wakes me on a good day between 4 and 5 a.m. I get moving for work and I am ok. The severe symptoms begin around 1 pm. I have a hard time when a doctor asks if my RLS is tingling and a need to move my legs! I describe my RLS as the feeling of a large knife jamming into the back of my leg and twisting, repeatedly. Shortly before 1 pm daily I take .5 mg ropinirole and hydrocodone 10 mg. I have been using hydrocodone in addition to ropinirole for about two years. When using ropinirole only, the dose would put me to sleep at work or make it dangerous to drive home. The ropinirole/hydrocodone dose usually allows me to make it through the work day, approximately once every few months I need to leave work early from discomfort which makes me sick to my stomach.

By 5 pm my RLS makes it impossible to rest and I feel too tired to accomplish much. At this point I would take .10 mg ropinirole (if I feel that I can tolerate the pain and want to stay awake) and another 10 mg hydrocodone. I try to do a moderate bike ride or walk early evening. About 3 days a week this allows me to tolerate the pain and stay awake until somewhere around 9 pm when I take another .10 mg ropinirole and fall asleep. On the other 4 days of the week I either need to take .4 ropinirole and fall asleep immediately or jump up and down, walk, roll on the floor, whatever... until I can sleep a few hours. I am woken by RLS between 12 am and 3 am numerous times during the week when I will either suffer because the use of hydrocodone concerns me or try taking 5m and possibly sleep a few more hours.

Family History: Father and sister had RLS when tired, relieved by sleep. Both my father, before his passing, and my sister did not have the severity of symptoms as I do and both had almost complete loss of symptoms later in life. My sister around age 45 and my father around age 65. My daughter is age 26 and has occasional RLS. There is a family history of depression and I have been on anti-depressants since about age 23. I am currently taking Effexor XR 75mg.

Past treatments: My memory is bad but I do remember that for a time I was prescribed a medication to take for sleep which did not relieve the RLS but made me too out of it to be able to walk around when I was awakened with RLS so I just cried a lot during the night in pain. About 4 years ago was when my husband started researching on rlshelp.org and I asked my doctor to check my iron levels. Again, memory... but I do know that my ferritin level was 3. After I emailed rlshelp.org and received help, I was able to convince my doctor to give me IV iron but the highest my ferritin level ever reached was 7. I have taken oral iron FOREVER. As my doctor was unfamiliar with IV iron therapy, she would only authorize the treatment about every two months when my symptoms where terribly severe again.

About 2 weeks after each iron treatment I would have about 4 weeks of relief and then would revert. As it got increasingly difficult to get my doctor to authorize iron treatment, I found an RLS specialist in the area who during my initial visit told me that she did not believe in IV iron therapy. She arranged for a sleep study which just about killed me (kidding) - it was so awful being hooked up unable to move and in pain. I was notified that I would need to do another sleep study for additional information and never went back. I then pursued treatment for heavy menstrual bleeding, hoping that was the cause of my iron levels, and had a hysterectomy and one ovary removed (possible cancer but tests were fine) about a year ago. I haven't sought any treatment since that time.

There are not many RLS specialists in my area but I searched online today and found a different one in my area. Before scheduling an appointment I wanted to check with you on any guidance you can give me. I have asked my regular doctor for a different anti-depressant or to be taken off for years as I know that can affect RLS. I believe I needed the medication years ago but feel that my depression at that time was more situational and believe that for years the depression is due to RLS. I otherwise have a wonderful life, family, children...

In summary, again, I am looking for any guidance you feel you can give me before I start this treatment process again. I don't feel that I can ask you if you feel that I can go off an antidepressant, which is what I will suggest to the doctor, but could you give me a suggestion for alternatives? I am the kind of person that will follow a doctors orders at all times if possible and would do a sleep study again if recommended. Do you feel there is a need? I am also hoping that this doctor will look at my iron levels again and treat that if needed. Can you give me any guidelines on iron/treatment?

I pray that you will have time to respond to me. I feel that I should be able to get all this information together from the web site and am sorry to bother you with this, I just get so confused lately when trying to research.

Dee

A Medical Reply

I can give you some general guidance but you are correct that I cannot advise you about stopping medications like antidepressants.

Firstly, are you correct with your ropinirole doses? The lowest dose available is .25 mg so the only way you can get .1 mg (1/10 of a mg) would be to cut the .5 mg in fifths (which is almost impossible and would give you very inaccurate doses). Therefore, I am questioning the .1 mg and .4 mg doses.

Your ropinirole therapy may be causing augmentation (worsening of your RLS due to taking the medication) and that may be driving your increasing need for treatment. This problem is especially common with low ferritin levels. If augmentation is occurring, your therapy should be very different.

Intravenous iron therapy for RLS is still only experimental so it is not surprising that your doctor is somewhat concerned. However, if you have refractory anemia that is not responding to oral iron therapy (it is most often very difficult to increase ferritin level with oral iron) then the IV iron therapy is standard therapy. However, for RLS, you often need several infusions (over a few weeks) to bring the ferritin level to about 200.

As far as antidepressants are concerned, only Wellbutrin (works well for a few but often not as good as Effexor and other RLS unfriendly drugs) and trazodone (not a great antidepressant) are RLS friendly. Only trial and error can tell you if the RLS is driving the depression or whether the depression is separate from that problem (but perhaps increased by the RLS).

For RLS problems that are more complex and complicated like yours, it is typically very hard to find a local RLS specialist who really knows what to do.


Sent: Tuesday, June 21, 2011 1:32 PM
Subject: RLS and Mirapex

I made the huge mistake of mentioning to my neurologist (who initially was trying to help me get rid of migraines and suggested sleep testing, which resulted in my using a sleep apnea machine at night and feeling much better), that I sometimes had restless legs. He prescribed generic Mirapex which helped at first (one a night) but soon I found the RLS was much worse and happening frequently during the day, which had rarely happened prior. I tried to get off Mirapex and gave up after missing three complete nights of sleep. Any idea what is going on here? Should I ask for a different drug, i.e. Neurontin? Any advice would be appreciated. My life is controlled by RLS.

Dwight

A Medical Reply

What you are experiencing is augmentation from taking a dopamine agonist (Mirapex). This is a well known phenomenon that occurs unfortunately all too often to Mirapex (and Requip) users. Check out our website for more information on augmentation by looking at the many letters on this topic.

Once augmentation occurs, it is very hard to get off the dopamine agonist. We suggest that you use a potent opioid like methadone for at least a few weeks. Neurontin is not a very reliable drug but the new drug Horizant (a better form of gabapentin which can now be prescribed and is available) or Lyrica are much better options for long term control of your RLS without concerns of augmentation or dependence/tolerance.

A  Reply from Dwight

Sent: Wednesday, June 22, 2011 5:39 AM
Subject: Re: RLS and Mirapex

I am amazed and grateful for your prompt feedback. I'm fortunate to have found this website. I will discuss your advice with my neurologist. I'll let the forum know what happens.


Sent: Friday, June 24, 2011 9:47 AM
Subject: Medication Side Effects

My name is Bill Schramm and I am the leader of the Monterey Bay RLS Support Group. I am writing because I have a question about possible side effects from Mirapex. One of our Support Group attendees has reported dry mouth, no saliva, lack of taste and lack of appetite.

I have found that these can be caused by Parkinson's drugs so I have two questions. Could Mirapex cause these symptoms? Is there any way to treat the symptoms without stopping the Mirapex?

Bill Schramm

A Medical Reply

Dry mouth is a side effect of Mirapex. It is not one of the more common ones but does occur. The only treatment would be to reduce the dose or discontinue the medication.


Sent: Saturday, June 25, 2011 9:18 PM
Subject: Gabitril for RLS in a non-epileptic patient

I have restless legs and was taking Requip. The drug did not work and kept me up all night. she now has me on Gabitril for restless legs and Ambien (for insomnia). I been taking 8 mg of Gabitril for 6 months, and it works. My concern is I never had a seizure and could Gabitril cause seizures in non- epileptic?

Howard R.

A Medical Reply

Gabitril (tiagabine) is one on the newer anticonvulsant medications. It is a strange choice for treating RLS as there are absolutely no medical articles or even case reports in the literature examining the use of Gabitril for treating RLS. There are several other anticonvulsant drugs that have been studied in some detail (especially gabapentin, Lyrica) and a new one Horizant that has actually just been approved by the FDA for treating RLS (and is currently available).

I am probably one of the few doctors who has used Gabitril for treating RLS on several patients and found that the effects were only modest. I therefore did not pursue using this drug any further nor did I publish my findings (too busy to do so). If this drug is working well for you, then stay on it. However, if not, you should speak to your doctor about trying another of the more proven and tested anticonvulsant drugs.

There is no concern about using these drugs on patients who do not have epilepsy as they cannot cause seizures since their action is to prevent seizures in patients with that problem.


Sent: Tuesday, June 28, 2011 8:25 AM
Subject: RLS after stopping Prozac

My son is 19 has been on medication for OCD for several years. He was switched to Prozac (generic) in January do to his other medication causing extreme drowsiness. He was on 60 mg of Prozac and had trouble being motivated in college so he dropped it to 20 mg. After school let out in May he decided to try going without medication over the summer since he was still very apathetic. Within a few days of stopping the Prozac he started with severe RLS. He has never had this problem before.

I have read that Prozac can cause RLS, but not having it develop from stopping the medication. Could this have been the cause of the RLS or would it just be a coincidence? My husband also has RLS so there is a family history.

Curt & Trish C.

A Medical Reply

You are correct about Prozac typically worsening RLS. That is the most common side effect experienced by RLS sufferers using that drug. However, if your son did not experience worsening with Prozac then he is clearly not in that large group of RLS patients that exacerbates on that drug and SSRIís in general.

Stopping the drug does present problems however. If he did not taper off the Prozac then he could have been suffering from SSRI withdrawal syndrome which increases many symptoms including anxiety and certainly could worsen RLS. Also, the Prozac may have been treating some general anxiety problems which of course would increase when off the drug and indirectly increase RLS symptoms.

Typically, when RLS symptoms change suddenly with a change in medication, one should look closely at the medication as a source of this change.


Sent: Tuesday, June 28, 2011 10:35 AM
Subject: Mirapex rebound

I have had restless legs since late 40's and now I am in mid 60's. It is worse because of low back pain . I have taken a half of.125 mg tablet of Mirapex with a half or whole Vicodin for 5 years now. The Mirapex is rebounding and I need more and it makes it worse for an hour and then I can get some sleep- I feel miserable the next morning. I would like to see the doctor and get a spine x-ray.

My legs and lower back drive me crazy with tingling until I take enough meds. to go to sleep. Standing up is the only relief. What could I substitute for Mirapex? I hate drugs but I hate thrashing all night. That other Parkinson drug (Requip) makes me suicidal.

Linda B.

A Medical Reply

There are several options that you can discuss with your doctor.

The small amount of Mirapex may no longer be covering your RLS and the "rebound" may reflect more of a general worsening of your RLS with time rather than a worsening (the correct term here is augmentation) from the Mirapex itself. The way you would determine that is if the RLS got worse again within weeks or months of increasing the Mirapex.

You could take more Vicodin (which might also help your back pain) and that would most likely cover your RLS symptoms. Stopping the Mirapex may also be helpful in that case.

Another choice would be to go on the new RLS drug Horizant (just available for the past 2 weeks) or Lyrica. With these drugs on board, you would be able to stop the Mirapex and do well.


Sent: Friday, July 01, 2011 6:59 PM
Subject: Topamax

My doctor put me on Topamax to reduce my migraines and it has exacerbated my RLS. Do you think that the longer that I am on this med it will go away or do you think I need to try a new medication?

Amber I-M

Medical Reply

That is an unusual response to Topamax as we have used that drug successfully to treat RLS. However, anything is possible with RLS and drugs.
If the problem does not get better soon, it may be worthwhile discussing a change to another drug to see if your RLS improves.


Sent: Sunday, July 03, 2011 7:54 AM
Subject: Requip

I have just been given Requip 2mg and I am concerned as to the effect it has had. I am trying to get an appointment with the neurologist I saw (I am living in Romania at present ) but can't get one until next week. My symptoms have worsened and my legs are more painful than they have ever been, 24 hours a day. My question is can Requip cause this?

I am only asking for an opinion not a diagnosis. I know some of the people I have spoken to who have tried Requip had problems but I really don't know what to do until I can see my neurologist.

Debbie W.

Medical Reply

Unfortunately Requip (and the other dopamine agonist, Mirapex) can cause that type of problem. It is most likely augmentation which is very hard to treat. Increasing the dose of Requip will help for only a short while and will then make the problem worse.

We typically suggest that patients go off Requip but that causes a few weeks of markedly increased RLS symptoms. Opioids (methadone, oxycodone) are helpful for that period but most doctors do not like or want to prescribe them.

A Reply from  Debbie

Sent: Wednesday, July 06, 2011 3:28 PM
Subject: Re: Requip

I came off them after 4 days it was horrendous and wont be taking Mirapex either as it's in the same group. Went today and she gave me Propranolol and Rivotril. Don't know anything about them so am doing some research. If you know about them please let me know.

Debbie W.

Medical Reply

Propranolol is a beta blocker used for high blood pressure and has no effect on RLS (it is never used by any RLS doctor). Rivotril is clonazepam (called Klonopin here in the USA) and although some of the old text books suggest that it should be used for RLS, it does not really treat RLS but rather just helps RLS patients fall asleep (like any other sleeping pill as it is related to Valium).

There are much better and shorter acting sleeping pills than clonazepam (you can read the many replies about why I do not like using medication) such as Imovane (zopiclone which is similar to Lunesta in the USA) or Ambien.

For now, opioids would control your RLS in the short term and gabapentin or Lyrica would be better choices for the long run.

It may be helpful to get a copy of my RLS book for patients, RLS: Coping with your sleepless nights as it goes over these issues at length. I also have an RLS book for doctors that may help guide your doctor on how to treat your RLS.


Sent: Wednesday, July 06, 2011 11:30 PM
Subject: PLMD and Benign Fasciculation Syndrome

I suffered most of my live from benign fasciculation syndrome and recently underwent an overnight sleep study. To my surprise I was diagnose (besides OSA) with PLMD, my index was 28. That night my fasciculations were very pronounced, especially in my lower leg. Is it possible that the EMG picked up the fasciculations instead of the PLMS?

I will have a repeat study soon, and nobody within the organization (here in the SF Bay Area) that will perform the the sleep study has an understanding on how to differentiate the two muscle movements. Would an Actiwatch be a better solution?  I am starting to wonder if there is a relationship between BFS and PLMD.

Stefan

Medical Reply

Typically, muscle fasciculation and PLM should be very easy to differentiate on a sleep study. If there is a concern with your local sleep lab, get your next study (if necessary) at the Stanford sleep lab (I will be going up there once a month to run and RLS clinic and teach the sleep residents there starting in September).

Even so, PLMS may not be worth further investigation. If your 28 PLM/hour were not associated with arousals (we call these PLMAI or PLM arousal index) then they are most likely of no clinical significance and do not need further clarification.

If you did have a PLMAI of 28/hour, that might be a cause of concern but even that problem is very controversial and many sleep/RLS specialists feel that PLM even with arousals do not cause any real sleep problems (they feel that they are merely a sign of something else happening in the brain) and should not be treated.

A Reply from Stephan

As far I recall I had only (at best) a handful arousals with the PLM's, so after all it may not be something I need to treat. My arousals related to OSA are more significant.
I am actually schedule for a Stanford Sleep lap test in the upcoming month, Dr. Kasey Li referred me there.

I am not sure if the technicians at my last test were able to distinguish the two (BFS vs PLM), what made me think that they confused them is that they saw an equal amount of leg movements before sleep onset, hence related to BFS.

Stefan

Medical Reply

Typically, muscle fasciculation and PLM should be very easy to differentiate on a sleep study. If there is a concern with your local sleep lab, get your next study (if necessary) at the Stanford sleep lab (I will be going up there once a month to run and RLS clinic and teach the sleep residents there starting in September).

Even so, PLMS may not be worth further investigation. If your 28 PLM/hour were not associated with arousals (we call these PLMAI or PLM arousal index) then they are most likely of no clinical significance and do not need further clarification.
If you did have a PLMAI of 28/hour, that might be a cause of concern but even that problem is very controversial and many sleep/RLS specialists feel that PLM even with arousals do not cause any real sleep problems (they feel that they are merely a sign of something else happening in the brain) and should not be treated.


Sent: Tuesday, July 12, 2011 12:34 PM
Subject: Very Severe RLS and Options

I am writing this email with the hope of gaining additional suggestions or solutions for my fathers RLS. My father is 79 years old and has suffered from RLS for the past 20 years. My father can be considered a complex patient due to the fact he has chronic atrial fibrillation, a bovine aortic valve and peripheral neuropathy. However his last cardiac catheterization 3 years ago showed no significant issues and a recent ankle brachial test showed no peripheral artery disease. He does not take any cholesterol or blood pressure medications as there are no issues.

His RLS has significantly worsened over the past 5 years and he has very severe RLS. Based on RLS Rating Scale he scores 38. As with most RLS patients, when he is busy, the RLS does not bother him. However because of his advancing age it is becoming more difficult for him to stay active, which leads to increasing RLS symptoms. My father has exhausted the majority of therapeutic options for RLS. The list is long and includes, Mirapex, Requip, Neurontin, Neupro, Sinemet, Klonopin, and Lyrica. None of these options provided any relief and caused only issues such as augmentation and edema of the legs and feet.

He was prescribed Vicodin 2.5 mg every 4 hours not to exceed 30 mg in a 24 hour period. He did obtain relief for a significant period of time but then had break through and very little reprieve from the RLS. Recently a new RLS doctor prescribed Methadone 2.5mg twice daily. He was able to get rest and have fewer episodes of RLS for about 2 months, my father was at peace. Soon the symptoms returned to the point he is not getting any relief.

He was weaned off the Vicodin over a 2 week period prior when he started the Methadone. In the last month he has broken through the Methadone and is only sleeping about 2-3 hours a night with brief naps during the day. The RLS doctor prescribed Ambien CR 6.25mg but that did not work, so the doctor increased the dose to 12.5mg. He does not achieve any significant sleep with the combination of Methadone and Ambien CR.

During our last visit with the RLS doctor 1 week ago, he prescribed Wellbutrin 100mg to be titrated 150mg because my father, mother and I are all in agreement that he is becoming more and more depressed due to the lack of sleep, decreased motility and solution for his severe RLS. The Wellbutrin has caused significant edema in the legs and he is thinking of stopping it.

He has had issues with other gabapentin medications, so I would think Horizant is out of the question even though it was studied in moderate and severe RLS patients?? Is an option to increase the Methadone dose?? Is an option to supplement break through with Vicodin? Is there another narcotic that would provide relief over that of the Methadone??

I realize there is no magic pill but I am looking for anything that will allow my father to get at least 5 hours of sleep a night or day. If you require additional info please let me know.

Karl

Medical Reply

Vicodin is only a moderately potent opioid that does not work near as well as methadone for RLS and lasts only about 3-6 hours (at best). Furthermore, Vicodin contain acetaminophen (Tylenol) which does not help RLS and thus could only cause problems.

His dose of methadone is quite low and usually higher doses are needed (in the range of 10-15 mg/day or higher for severe RLS, even considering his age). Combining this with a drug like Lyrica (depending upon if he had problems in the past with this drug) or Horizant might help him reduce the methadone dose. Horizant is actually quite different from regular gabapentin so this may be an option (again, depending upon what negative reactions he had with gabapentin in the past).

Wellbutrin does not do very well when it (or any other antidepressant) is used to treat depression caused by lack of sleep and discomfort from uncontrolled RLS symptoms (antidepressant drugs work much better than when the depression is out of proportion to the obvious causes).


Sent: Saturday, July 16, 2011 11:31 AM
Subject: Problems with Requip and RLS?

I have been a sufferer of RLS as long back as I can remember. I am now 51 years old, and my RLS is out of control. I take the generic "Requip" daily. I usually get very sleepy from it, so taking it during the day really wrecks my day. At night when I take it, 6 out of 10 times I get severe nausea. The symptoms have gotten worse with age. Now I also have leg and toe cramps and even my wrists and hips have the Nervous twinges.

My sleep has been effected severely and there are some nights I only get 3 hours of broken sleep... I have a 28 year old son who lives with us that has Cerebral Palsy he is 6 to 12 months old developmentally, so he requires total care. This is becoming very difficult for me as I am tired way too much. The RLS symptoms for the past year have gotten a lot worse and now I have a hard time just sitting without any symptoms which makes driving and riding in the car any distance a big problem.

I enjoy cross-stitching but have to stand and walk to be able to do it, as sitting in the chair is almost impossible. I try as odd as it may sound, to cat nap leaning against the counter, but that only lasts so long. It's like any time my body is in any position other than standing, my symptoms are there. What can I do, I have seen a neurologist, who increased my medications to no avail.

I thought about not taking the generic Requip, but I doubt I would even get the 3 hours of sleep it I did.

Louise H.

Medical Reply

There are a few problems with your Requip therapy. It causes sleepiness in you which clearly limits any further increases in dose. However, that is the least of your problems with this drug. If your RLS has worsened since being on this medication (especially if it is occurring earlier in the day), then you are likely suffering from augmentation (worsening of the RLS from taking Requip) and further increases in the drug will only result in further worsening of your RLS (after a short period of improvement).

The treatment for augmentation is usually to stop the medication. This can be very difficult as RLS symptoms will get markedly worse for a few weeks. We usually give a strong opioid (methadone, oxycodone) for that period. You may do better on the new drug Horizant or Lyrica as a maintenance drug in the future.

With proper care (which is typically very hard to find for severe RLS), you should get complete control of your RLS symptoms.


Sent: Thursday, July 21, 2011 1:40 PM
Subject: My RLS situation

I went back through your patient letters and found myself writing you in 2003 and 2005. I really didn't think that it had been that long.

I originally tried the routine RLS drugs and some not so routine. Clonazepam was my first experience followed by Sinemet, pretty much before I heard of your site. I also went through Requip, Mirapex, Neurontin, and more that I can't remember. All gave me terrible augmentation. I ended up with Ultram/Vicoprophen/Seroquel. The Ultram is daily 150 mg and is wonderful prophylactically for my symptoms.

If however, I do experience feelings I have to take a Vicoprophen 7.5/200 mg to relieve them. I get 30 Vicoprophen a month and seem to only end up with a half dozen or so at the end of the month. My concern is the continued use of the Ibuprophen. I understand the concern about consuming too much NSAID. I would guess that I have been doing this for about 4-5 years. I have combed the internet and have been unable to find a drug that is pure hydrocodone. Your input would be appreciated.

As an aside, I noticed in a past posting to you that I was taking a half of a 25 mg Seroquel for sleep. Over the years since 2005 that has been upped to two 25 mg tablets. It works so beautifully I hate to get away from it. Ambien made me horrible the next day.

Devi
Honolulu, Hawaii

Medical Reply

Although hydrocodone is a reasonable treatment for RLS, it is only commercially available combined with another drug (ibuprofen, ASA or acetaminophen). Since only the hydrocodone helps the RLS, by taking a combination drug you are exposing yourself to another drug that has no benefit and might cause side effects (especially over time).

There are 2 ways around this dilemma. The first is to have a compounding pharmacy (there should be at least one in Honolulu) make up a pill of pure hydrocodone. This will be considerably more expensive but should take care of your issues.

The second way would be to change to a "pure" opioid (which are typically the more potent ones) such as oxycodone or methadone. You could take them in lower doses (like 1/2 of the lowest dose tablets) which would be roughly equally potent (both as a pain killer and RLS drug) with the 7.5 mg of hydrocodone you are getting with the Vicoprophen.

The Seroquel is known to worsen RLS but if you are not experiencing this problem then you may have dodged that bullet.


Sent: Friday, July 22, 2011 8:18 PM
Subject: RLS from Celexa withdrawal?


First of all, I haven't been here in years, and would like to thank everyone involved for the help you gave me 4 years ago when I was suffering horribly. I had a severely low Serum Ferritin level from donating too much blood. After correcting the situation (thanks to what I learned here), it took nearly a year, but I improved about 98% with just an occasional dust up of symptoms since. The information and the wonderful email support at this site literally saved my life!

Anyway, about a week ago I finished a slow taper (2 months) off of 10 mg Celexa, which I had been taking for the past 2.5 years. Throughout the taper and still now, I have had fairly severe RLS at night. I'm a bit worried that it is back permanently, but I've also heard it could be from the taper. I do know that SSRI's and other antidepressants can definitely flair things up, (the small dose only bothered me very slightly) but it surprises me that coming off it could have the same effect. Are you aware of this withdrawal effect? If so, when could I expect it to go away?

PS. I would just like to mention a product to your readers that has helped me with the more mild to moderate symptoms. It's Hylands 'Restful Legs'. It's easy to take in the middle of the night as it just dissolves under the tongue and works (for me) within about 5 minutes. Combining it with some stretches helps even more. Wishing relief for all of you!


Linda in Lakeport CA

Medical Reply

You are correct that the SSRI drugs like Celexa typically make RLS worse and stopping makes RLS much better. However, some people do develop an SSRI withdrawal syndrome (which should be less likely to occur with a slow taper but may still be possible) that might cause increased stress and thus indirectly worsen RLS. Also, if the antidepressant was helping anxiety/depression and stopping it worsened these problems, then it is possible that might be the reason for increased RLS symptoms.

Otherwise if the above does not apply to you, there may be no good explanation and this might just be just an unusual reaction to stopping Celexa in you. Likely, it may get better with time or otherwise, you may need other treatment for your RLS.

The Hylands product is touted to be good but other than testimonials, there is no proof that it really helps RLS other than through the placebo effect.

A Reply from Linda

Sent: Monday, July 25, 2011 8:04 AM
Subject: Re: RLS from Celexa withdrawal?

Not anxious or depressed at all (except for this!), so hopefully it's just part of withdrawal. I do still have some other wd symptoms like the 'brain zaps' and boaty feelings. Not too bad though. Hopefully the RLS will fade.

Linda


Sent: Saturday, July 23, 2011 5:02 AM
Subject: Alternating medications?

Background: Moderate RLS since I was 11 (mom thought it was growing pains kind of thing). At age 26 (I'm now 30), RLS turned severe after going through a messy breakup. My ex and I had been abusing E and other substances affecting dopamine/serotonin for approx 4 years (stupidity!) I had to go on Effexor due to suffering severe depression.

Currently I'm taking 75 mg of Effexor (I've tried reducing the dosage 37mg, but major idiopathic anxiety made it impossible to cope). My family doc prescribed me a low dose of levocarb and that seemed to work at first, but of course augmentation soon took effect. My physician was not informed enough to continue with my treatment, he increased my dosage and referred me to the sleep clinic.

I finally got in to see a sleep clinic specialist/respirologist who has been very helpful, although he said the levocarb is an 'ancient drug'. After some trial and error, we discovered that I need a few drugs to help with my RLS.

Currently I take 2 Requip (not sure of the dosage, I think they're the lowest ones-2.5??) and 2 Lyrica at night (2-3 hours before bedtime) Also, I take 2 T3's (Tylenol #3), once early in the day (late morning/early afternoon) and once around 7 or 8pm.

This combination has worked well for quite some time, however, now that I've been working more and more, sitting in a desk chair for extended periods has been cause major pain in the area where the seat ends (underneath the knees). I adjust the chairs as much as possible and sit on cushions to try and mitigate the pain, get up and walk around often, but nothing seems to work. My RLS has been exponentially worse at night as well and usually need to take an extra pill (either Lyrica or T3) to alleviate the symptoms even just enough to fall asleep. The sleep clinic doc is wary of me taking T3's cause of my history of abusing substances (although what he doesn't understand is that I was pressured into doing it by my ex and had/have no desire to do so anymore)

My question is whether it's safe to alternate Levocarb with my Requip. I don't want to increase my Requip anymore if I don't have to and I wonder if I would find more relief if I alternate back to the Levo for a short period and then go back since it has helped in the past. My doc doesn't seem to think it's a good idea, but I still wonder...I need some sort of relief cause I'm going to be getting more and more shifts in the near future.

Thanks so much for this website, it's helped me tremendously throughout the years. Also, leg warmers are a cheap and effective lifesaver!

Ly-Anne

Medical Reply

Adding Sinemet (levodopa) on a regular basis for RLS is never a good idea as augmentation will occur quickly.

Options to discuss with your doctor is increasing the dose of Lyrica (or even trying the new drug Horizant) and/or increasing the Requip (the doses of all the above are important to know before deciding whether they should be increased).

Tylenol #3 is not a great RLS opioid and the more potent ones that do not contain Tylenol (or other additives) work much better.


Sent: Saturday, July 23, 2011 8:47 AM
Subject: Horizant with Mirapex for RLS?

I took a Horizant last night along with my Mirapex and I can not wake up. The Horizant instructions said it might cause sleepiness but I am wondering if the Mirapex is adding to the sleepiness. Should they be taken together?

Gloria S.

Medical Reply

They typically can be taken together except if the Mirapex had already caused sleepiness. If you had not experienced any sleepiness with Mirapex then the entire problem is due to Horizant which is known to cause sedation in a minority of patients.

A Reply from Gloria

Sent: Monday, July 25, 2011 4:56 AM
Subject: Re: Horizant with Mirapex for RLS?

I really was sleepy the first two days but yesterday I was ok.

Gloria S.

Medical Reply

Most patients will notice improvement in sleepiness problem (if they experience it) within a few days to a few weeks.

A Reply from Gloria

Sent: Monday, July 25, 2011 7:56 AM
Subject: Re: Horizant with Mirapex for RLS?

If I have adjusted to the Horizant, will it do the trick or will I still need the Mirapex also? I guess my question is do some only take Horizant?

Gloria S.

Medical Reply

Many patients will do well on Horizant alone. Although the dose is only approved for one pill per day, some may need more. For more severe cases, combination therapy with Mirapex or other drugs may be helpful.


Sent: Sunday, July 24, 2011 7:28 PM
Subject: Advice for RLS and insomnia

I am due to see a Consultant Rheumatologist this week as I have had Temporal Arteritis which was diagnosed over a year ago but because of our NHS waiting lists here in the UK, the Consultant appointment has only just been provided. The condition is pretty much under control but my new GP (regular GP is on extended holiday) wishes me to keep the Rheumatologist's appointment as she considers that my ongoing aches and pains may be related to the Temporal Arteritis, i.e. polymyalgia.

My GP wishes me to take to this appointment some information that I had compiled for her as she feels that my ongoing conditions may all be related and are complex. My new GP is very willing but is uneducated in WED/RLS as shown in her comment that the Rheumatologist may be able to advise regarding my RLS. However I know she will be willing to learn and wants to help. My doctor says she has never come across anyone still functioning as I am when on so little sleep.

I have kept a sleep diary for about 6 weeks and this shows an average (fragmented) sleep of around 3 hours per night despite having used zopiclone 7.5mg and then Circadin 2mg.. My doctor has given me 10mg Diazepam to take for one week together with the Circadin 2mg to give me some sleep and indeed it has helped. And she actually phoned me at home the following day to see how I had slept the previous night. However she also confirmed the Diazepam is definitely short term medication and wants to see me next week. Following a chat with other doctors in the practice, because she feels my varying conditions are complex, she feels that amitriptyline would be of help with regard to sleep and also for my general body pain - feet/ankles/hips/back/neck/shoulder/hands/wrists.

I have told her of my concerns regarding taking amitriptyline as it is known to exacerbate RLS symptoms but she would like me to try it and then deal with any increased RLS symptoms should they occur. My RLS is 24/7 and affects both legs and arms and the thought of it worsening is pretty horrific as I have it at present under a certain amount of control. It is not the RLS that keeps me awake at night, it is insomnia.

GP does not wish to take the route of Temazepam for sleep and I wonder how you feel about the plan to use the Amitriptyline for sleep and general body pain, and to deal with any increase in RLS symptoms should they occur.

Betty R.

Medical Reply

The diazepam and temazepam are in the same class of benzodiazepines and quite similar except that diazepam has a very long half-life. The Circadin may be somewhat helpful but may not work that well without the diazepam or temazepam. When taken on a daily basis, either drug may result in tolerance/dependence.

Amitriptyline is has a mild sleep promoting effect but might help you get some additional sleep but does have a very significant propensity to worsen RLS. You will never be sure what will happen with all those drugs and only trial and error will be able to answer those questions. Just beware that bad things may happen with the amitriptyline and let you doctor know if that any such problems occur.

A Reply from Betty

Sent: Friday, August 05, 2011 4:18 AM
Subject: Sinemet for RLS?

I have recently been diagnosed with classic Fibromyalgia, and also suffer from Temporal Arteritis and RLS/WED.

The Consultant Rheumatologist recommended some reading for me which included the book 'Fibromyalgia - Understand and Getting Relief from Pain that won't go away'. The book is written by Dr Don L Goldenberg, Chief of Rheumatology at Newton-Wellesley Hospital, and Professor of Medicine at Tufts University School of Medicine. Dr Goldenberg writes about sleep disturbances the use of amitriptyline for Fibromyalgia (his wife is a sufferer) and it is at this point he refers to RLS.

He talks about other antidepressants and medication which are helpful for treating sleep disturbances. When referring to sleep disturbances he refers to RLS and states that Sinemet and clonazepam are good drugs with which to treat RLS. Is Dr Goldenberg's statement correct?  I understood that Sinemet should only be for occasional use to avoid augmentation.

The book was first published in Great Britain in 2002 and reprinted in2003, 2004, 2008 and 2009.  So when it was first published I reckon ropinirole and Mirapex were not available for RLS.

Betty

Medical Reply

Unfortunately, the information about RLS in Dr. Goldenbergís book (he may be an expert in fibromyalgia but clearly not in RLS) is both outdated and incorrect. Most RLS specialists have stopped recommending Sinemet and clonazepam (or other benzodiazepines) for RLS for the last 15 years or longer. As you have already noted, Sinemet is fine for daily use but should not be taken on a daily basis due to the very high (80-05%) incidence of augmentation of RLS symptoms. Dr. Richard Allen published an article in 1996 that confirmed the problems with daily use of Sinemet.

Clonazepam is also one of my least favorite drugs for RLS. It was the drug of choice (in part because there were no other drugs at the time) about 20-30 years ago but currently is not used by almost all the RLS specialists.


Sent: Monday, July 25, 2011 3:35 PM
Subject: RLS augmentation?

I am a 71 year old retired (Aug. 2010) dentist. I have had RLS about twenty years, maybe longer. Went to a sleep specialist for insomnia. They did polysomnography and said I had mild to moderate apnea. Prescribed a CPAP which I have never been able to use effectively because of RLS and possibly other insomnia factors. I told him about my jimmy legs and he prescribed Mirapex. Been on Mirapex 1mg. for quite a few years along with 1 mg clonazepam and 50mg trazodone. Also been on 40 mg Celexa for over 25 years, which I understand could contribute to my RLS. Tried Wellbutrin. Didnít work. Seem to be getting augmentation as I get weird symptoms as soon as I get still during the day. I canít ever seem to relax without a horrible sensation interrupting the relaxation response. Despite this I continue to function, do charity dental work on Monday mornings, exercise, travel and have a limited social life.

The point of all this is, I feel I am getting to the end of my rope. Go over to a friends for dinner, do fine then sit down to watch a movie and have to desperately leave in the middle.
Go on a cruise and spend half the night walking the halls etc. I have had two knee replacements and during one of these I found Vicodin helped immensely but unsure about the perils of this type treatment. Last thing. I am now getting paresthesia in all my toes practically every night for several hours. Can this be related to RLS or is it just some neuropathy.  Have an appointment with a sleep specialist next Thursday.

Lou L.

Medical Reply

It is very possible and likely that you have augmentation from taking Mirapex especially as you are on quite a high dose of that drug. We do not like to use doses over .5 mg/day for RLS and current thoughts are to keep the dose at .25 mg or less.

It is very difficult to transition patients off Mirapex to other RLS drugs and most doctors do not understand how to do it (and how bad the symptoms become during this period). It can be done very safely and comfortably with the correct medications (see our website and letters for more info). Under proper care (often hard to find even with specialists such as sleep specialists and neurologists), your RLS should be controlled and life should be almost completely back to normal for you.


Sent: Monday, July 25, 2011 8:33 PM
Subject: RLS medication + male factor fertility issues?

My husband and I have had 3 miscarriages this year (one with twins) and have been seen by a reproductive endocrinologist. All of my (female) tests have come back with no issues and perfect health. My husband had decent amount of sperm and decent amount of mobility, but the shapes were incorrect (amorphous). Is there any research being done on the impact of these medications (Mirapex, etc for RLS) on male factor fertility?

Brooke K.

Medical Reply

There is no research or information on the effect of dopamine agonists (Mirapex, Requip) on male fertility/sperm function but it is very unlikely that there are any such issues.


Sent: Tuesday, July 26, 2011 1:12 AM
Subject: RLS Help

I've had RLS since I was 18, and I figured out that if I limit my caffeinated soda intake then it doesn't bother me at night. Well, now I've recently had my first child, and while my RLS has bothered somewhat while I was pregnant, it has come back with a vengeance since I've been breastfeeding my daughter. I was taking prenatal pills when released from the hospital, my RLS came back, so I discontinued my prenatal vitamins and it went a way for a bit, only to come back a month later, and worse than I've ever had it.

My daughter is 2 months now and just starting to sleep through the night, unfortunately I am unable to do the same. I've tried taking the prenatal vitamins again, but they haven't relieved my RLS. I've tried cutting out caffeine all together (chocolate, coffee, soda), I don't drink alcohol and I don't smoke either. I've tried eating cereals with iron in it before bed, drinking more water, drinking milk before bed, stretching, exercising more during the day, having a footboard to continually push my legs against while sleeping, and taking ibuprofen. All of which have either failed miserably, or worked only once or twice.

Can you please suggest a good home remedy for me that is safe while breast feeding? I would love to start enjoying my new life as a parent rather than battling this condition.

Annika

Medical Reply

Although prenatal vitamins do contain extra iron (generally 30-60 mg), that is actually very little compared to the 325 mg (taken 3 times daily) that is recommended for patients with iron deficiency. Furthermore, iron is very poorly absorbed and it is very difficult to increase the body's iron levels with oral iron therapy. Therefore, it is very unlikely that taking prenatal vitamins would help (or worsen) RLS symptoms.

There are no other home remedies for treating RLS (other than those that you have already tried) while breastfeeding that help RLS symptoms in any significant fashion. This is a very tough problem that may only respond to opioid therapy (methadone) which should only be considered for extremely severe RLS.


Sent: Thursday, July 28, 2011 9:14 AM
Subject: Medication for Acid Reflux When RLS is in the Picture.

I have been taking rabeprazole (20 mg 2 x day) for acid reflux, nausea and vomiting. It worked like a charm but my RLS has been getting worse and worse, requiring me to increase my Mirapex. The RLS got so bad that I wasnít sleeping and was having trouble working. I read somewhere that some anti-nausea drugs can make RLS worse so I decided to stop taking the rabeprazole.

Within 2 days, my RLS was so reduced that I was able to go back to the original dose of Mirapex (1 mg). But now the acid reflux is back and I am trying to find a medication for that which doesnít make the RLS worse. Can you advise of any such medications or where I can find this information?

Erika

Medical Reply

We do have a list of drugs that worsen RLS on our website in 2 places. You can download/print a copy of our medical alert card with this information or look on our Treatment Page.

However, rabeprazole (Aciphex) is not on the list of drugs that worsen RLS as it has never been described as causing that problem (I have many RLS patients on this drug and other PPI drugs that treat heartburn). You may want to try other PPI drugs (Nexium, Dexilant, Protonix, etc.) to see if they also worse your RLS or if the problem is confined to Aciphex.

If the other PPI drugs exacerbate your RLS then you could try the older heartburn drugs like Zantac, Pepcid, etc. that also work well for GERD problems.


Sent: Thursday, July 28, 2011 12:30 PM
Subject: Question on Requip

I have been taking Requip,.25 mg for a week and it works for me. However, my doctor has now put me on 0.5 mg. Why would he do this when the .25 mg was working so well?

Jean R.

Medical Reply

There is likely only one reason that your doctor has increased your dose of Requip and that is that he does not know the proper treatment for RLS. If Requip at .25 mg is taking care of your RLS symptoms then increasing the dose can only cause side effects (and there are many of these that can occur) without adding any benefit.

The goal of treating RLS is to find the lowest dose of Requip (or any other drug) that relieves the RLS symptoms.


Sent: Sunday, July 31, 2011 8:08 AM
Subject: Fibromyalgia, RLS and medications

I have fibromyalgia and RLS. Iíve been taking Lyrica 75 mg am and pm. Also, take Lexapro 10mg, Vyvanse and Adderall for fatigue and trazodone 50mg at bedtime.

The Lyrica stopped most of the burning sensation I was having all over my body. And has helped a little with legs. More so at the beginning of me taking it. Iíve been on Lyrica about a year. What Iím wondering is should I take Mirapex or Requip now for the RLS? I think my worst problems are fatigue and the legs. It seems I can deal with the muscle and joint pain taking the fibromyalgia. Iím getting ready to start water therapy and am hoping that will help me!

I just saw a new rheumatologist last wk. He didnít change or add anything right now. Iím suppose to go back in 6 weeks. I donít think I stressed how much my legs hurt. The pain is mainly from my knees downs. Shin pain....I feel like I have to move them or take a rolling pin to them. Crazy, I know!

Basically, help me with my med selection. What would you change or add? I can then have a better understanding when I call or go back to my doctor. Oh, trazodone usually helps me sleep. Before that I hurt so bad couldnít fall asleep or sleep all night.

Deana

Medical Reply

You have several options to improve your RLS symptoms and the only way to find out which is best is to try them and see which one is the most effective with the fewest (if any) side effects.

You could increase your Lyrica dose. You could try 150 mg in the evening and then see if an increase in your earlier dose is needed (if you have daytime symptoms that need treatment). Lyrica could be increased further if necessary but that might increase the chance of side effects (mostly sedation part of which may be helpful to aid your insomnia problem).

If that does not help, then you might consider adding Mirapex or Requip but keep the dose low (.25 mg for Mirapex and .5 mg for Requip) which helps reduce side effects such as the dreaded augmentation problem.

Lexapro tends to worsen RLS but if this is working well you might not want to change it. However, Savella is an antidepressant drug that is approved for treating fibromyalgia (and nothing else) that has less of a serotonergic action so theoretically may have less of a negative effect on your RLS.

Trazodone is not one of my favorite sleeping medications (it is often touted as having antidepressant effects but these are very weak and only occur at much higher doses) as it tends to cause a next day hangover effect and tolerance may occur. I prefer short acting medications like Ambien or Lunesta.

A Reply from Deana

Sent: Sunday, July 31, 2011 7:48 PM
Subject: Re: Fibromyalgia, RLS and medications

Do you think taking trazodone is a better long term drug? Iíve always heard Ambien long term is not good! Also, I hate taking Lyrica because of the side effects. I have a terrible time with forgetting certain words, etc.

Yes, I do have horrible RLS during the daytime. But I hate to have to take more Lyrica.

Deana

Medical Reply

If the trazodone is working well for you and you are quite certain that it is not causing daytime sedation then it should be fine. You might get tolerant to it with time but just keep an eye out for that issue. Ambien and Lunesta work well even for long term use but some patients (the actual number is significant since so many people are on the drug) have problems with these drugs and of course should not use them but the majority do very well.

The new RLS drug Horizant (a much better form of gabapentin/Neurontin) may be worth trying. It may also cause sedation and thus also cause issues with you forgetting words. It acts upon the same receptors (alpha 2 delta) as Lyrica so should also help your fibromyalgia (although it has not yet been studied for that disorder).


Sent: Saturday, August 06, 2011 2:10 PM
Subject: Requip WARNING!!!

I am a 53 year old female diagnosed with RLS about 3 weeks ago. My doctor started me out on .25 Requip, moving up to .50 and then finally 1.0. This seemed to help, although I had to take it at least 2 hours before bed, or I couldn't sleep. After a couple of nights at the full dose, I began to get completely congested in my nose 45 minutes after taking the medication. My doctor had me cut back to .50, and again, that seemed to work for me.

However, on about day 10 of this I traveled to an elevation of about 4000 feet. That night I experienced a terrifying hallucination, which caused me to jump head first from my bed. I landed on my head and had to be taken to the hospital by ambulance. I have a cervical sprain. My doctor has since taken me off Requip. He feels it was a combination of my sensitivity to the medication and the change in altitude. I would like to warn others of this possible side effect. I was given Ativan to try at this point, and was able to sleep well last night.

Sue L.
Redondo Beach, CA

Medical Reply

Although Requip works well for many RLS patients, it does have side effects that limits its use. Your side effects are amongst the less common ones but they do occur. If the .25 mg relieved your RLS symptoms, there was no need to increase the dose and you may have done well with that lower dose.

Ativan is not an RLS drug but does help people sleep. It would have a similar use to help someone who could not sleep due to back pain, arthritis, headaches, etc. The concern with daily use of Ativan is that tolerance and dependence may occur with time.

You may want to consider trying the new drug Horizant which is not a dopamine agonist like Requip (Mirapex is the other dopamine agonist drug available).


Sent: Monday, August 08, 2011 1:12 AM
Subject: Other treatment for RLS other than Mirapex?

I have restless legs for years and I am 84 years old. I take 1 mg of Mirapex a day now my legs have started to jump. Is there something I can take such as 5HTP or what they call calm forte something to quiet my nerves?  I have had more trouble with my legs.

I am also not sleeping well. Nothing I take will help me sleep including prescription drugs. My doctor is a GP and I do not know where to go. Can I raise Mirapex?

Lorraine P.

Medical Reply

It is much more complicated than just taking over the counter medications or raising the Mirapex which is not a good idea. You are already on a very high dose (and side effects and other problems tend to increase) which is why many RLS experts now like to keep the dose at a maximum of .25 mg.

You really should see an RLS specialist who knows more about treating this disease.

A Reply from Lorraine

Sent: Thursday, August 25, 2011 1:48 AM
Subject: Augmentation?

I believe I need to get get off of Mirapex for a while what medicine could I take. My doctor does not know much about RLS. I just want to get back to Mirapex at a lower dose. I am not sure he would know what to give me?

Lorraine P.

Getting off Mirapex is very difficult once you have been on it for a while. It takes a lot of expertise to avoid a marked worsening of your RLS symptoms once your body is used to taking Mirapex. Typically we use potent opioids like methadone or oxycodone to help accomplish this task.

You donít state why you need to get off Mirapex but if the reason is augmentation, then once you are off the drug you should not go back on it.


Sent: Sunday, August 14, 2011 1:29 PM
Subject: painful legs day and night

I have been on Pramipexole 1 mg. twice daily for years and am having more trouble keeping my legs still day or night. My doctor has put me on Ropinirole  2 mgs. twice daily but I am still having problems around 3:00 to 4:00 p.m. with awful leg jerks, pain, tingling, and irritating symptoms. Will it be o.k. to take one Ropinirole a.m., and one Pramipexole at 3-4:00 p.m., then before retiring at 10:30 take another Ropinirole?

Please help me, I am just miserable.

Julie P.

Medical Reply

Taking an extra pill (it would be similar whether you took an extra ropinirole or pramipexole) would help you for a while then in the near future your RLS will likely get worse and then you will need more medication. That is because you are probably experiencing augmentation which is a worsening of RLS from taking a dopamine agonist.

The treatment is to get off the dopamine drugs but that is very difficult to do and generally requires a specialist that is very experienced in treating difficult RLS cases. It is very unlikely that your PCP will have any idea on how to do this without making your RLS symptoms go berserk in the meantime. However, it can be done very gently with appropriate treatment.

A Reply from Julie

Sent: Sunday, August 14, 2011 8:11 PM
Subject: Re: painful legs day and night

Thank you so much for your help and speed in answering. I am going to have total knee replacements soon, will the RLS go away or get better after these procedures?

Julie P.

Medical Reply

It is difficult to predict what will happen after any surgery but there will be a period of worsening when they discontinue the opioid pain pills (which also relieve RLS symptoms) and while you are still more sedentary due to the surgery. Once you are active again, your RLS symptoms should return back to where you were prior to surgery although some patients do notice a persistent worsening after any surgery.


Sent: Sunday, August 14, 2011 3:47 PM
Subject: Fibromyalgia, Back Pain, Severe RLS and Requip

I am a 46 year old female and have suffered from RLS for at least 25 years and it is just getting worse. I was started out on Sinemet but had augmentation and am now on Requip .25 mg three times a day, but I am still not getting any relief from constant RLS. I was also on Amitriptyline but stopped that over 3 months ago after reading that it makes RLS symptoms worse.

I am also taking Cymbalta 60 mg two times a day for Fibromyalgia, Baclofen 10 mg three times a day and Zolpidem at bedtime. Cymbalta does help with my Fibromyalgia so I do want to stay on this, I did try Lyrica and could not tolerate the side effects plus I didnít notice any improvement in my RLS. I am not getting more than 3 or 4 hours sleep a night and none in the daytime, even though I am exhausted.

I have also tried Mirapex, Tramadol and Neurontin. What can I suggest to my doctor?

Julie F.,
Arizona

Medical Reply

You are a difficult case in that you have not responded to the usual RLS drugs and are also taking Cymbalta which may be worsening your symptoms (even while it is helping your fibromyalgia).

You might want to talk to your doctor about trying the new drug Horizant. It is similar to Neurontin as it is a pre-drug of gabapentin but it is a much different drug otherwise and may work for you even when Neurontin failed (assuming that it does not cause side effects).

If that doesnít work then the only drugs left to consider are the opioids (such as oxycodone, methadone).


Sent: Monday, August 15, 2011 12:12 AM
Subject: Worsening RLS after back surgery

I've not been officially diagnosed by a doctor with RLS, but I've had it for years. My case has typically been mild, but I remember even as a child rubbing my feet against the sheets in order to fall asleep. Only about once a year would I have symptoms bad enough to get me out of bed in the middle of the night and long plane rides were uncomfortable. July 8th I had a 6 level spinal fusion and was put on oxycodone when I was sent home for pain management. I then downgraded to hydrocodone.

I've been trying to wean off of it as my doctor has told me not to drive while on this medication and I need to be able to get my 2 year old to school in a week. In the last 10 days I've had the worst RLS of my life. I've been up for hours at a time at least 3 times. Reading your site has led me to believe its because of reducing the hydrocodone.

Once I'm completely off the hydrocodone will my symptoms go back to their previous, mild, state or is it going to be this bad forever now? I was also prescribed valium for muscle spasms as my back muscles re-knitted. Would taking one of these before bed as I go through the weaning of the hydrocodone be helpful or only make things worse in the long run? Is there something else I could talk to my doctor about while going through this process?

Heather

Medical Reply

It is difficult to say exactly what caused your RLS to worsen. Typically, starting opioids (oxycodone, hydrocodone) does not make RLS worse when getting off them unless they were treating increased RLS symptoms caused by something else. My best guess would be that the trauma of surgery may have triggered your worsened RLS symptoms and the pain pills merely covered them up for a while. Weaning off opioids will simply leave you with no treatment for your RLS.

Treatment options include Horizant, Lyrica, Mirapex, Requip or opioids if the other drugs do not work.

A Reply from Heather


Sent: Tuesday, August 16, 2011 11:16 AM
Subject: Re: Worsening RLS after back surgery

Is it still possible that my symptoms will return to their previous mild state? My previous symptoms were not bad enough to be worth medication. But if they're going to stay this bad, I'd like to get on medication now! I know its a guessing game, but does it sometimes happen where symptoms get worse and then reduce again?

Heather

Medical Reply

It is very unpredictable. Usually, once the RLS symptoms worsen, they do not get much better but there are many exceptions to that rule. You can certainly wait a while and see what happens but since there are many treatment options, if the symptoms persist you should consider trying medication.


Sent: Wednesday, August 17, 2011 5:43 AM
Subject: Horizant question

I've been reading about the new Horizant. It sounds like it is an improved Gabapentin or Neurontin. I tried Neurontin a few years ago, and it had zero effect on my RLS symptoms. I am currently OK with Requip. But for future reference, would Horizant be worth trying if Neurontin does not work?

Ed M.

Medical Reply

Yes it would. Horizant is a much more effective form of gabapentin as it gets into the body much better and predictably and it comes in a slow release formulation that improves its use.


Sent: Thursday, August 18, 2011 1:26 PM
Subject: RLS & Mirapex

I've known for years that I've had RLS, but only had a dr. diagnose it recently. He's given me a prescription for .125 mg of Mirapex to take in the evenings. I notice that one of the symptoms can be sleepiness or sudden sleep. I'm also take 4 times per day 12.5 mg (12.5 each time .. total 50 mg daily) of Atarax for chronic idiopathic urticaria. Should there be a concern taking both, as the Atarax already makes me sleepy.

June H.

Medical Reply

Mirapex can cause sleepiness but it varies considerably from person to person. Most patients do not experience that side effect so you should worry only if you feel that there is an increase in this problem after adding Mirapex.

Atarax does increase sleepiness but it also worsens RLS. Drugs that also help urticaria, do not cause sleepiness and do not worsen RLS are Clarinex, Allegra and Zyrtec (also Zyrtec will sometimes cause sleepiness and then may also worsen RLS) and you might want to consider changing to one of these drugs and see how they work for you.


Sent: Sunday, August 21, 2011 1:38 PM
Subject: RLS medications

I am not sure if you are still answering questions, but I have been on about
7 different medications for restless legs. The sleep studies that I have had record my legs moving all night. I usually end up having the most acute symptoms listed with every type of medication. One I specifically remember having total confusion. It was an extended release medication. This is the side effect I truly want to avoid.

Also, I understand most medications make you drowsy during the day. If so, I have a difficult time balancing which is worse: being drowsy from medication or from not getting sleep from my legs moving all night. I have also read that the dopamine medications end up causing restless legs to become worse and even begin earlier in the day.

If you have any helpful advice, I would be forever grateful.

Donna B.

Medical Reply

It is difficult to answer your question without much more specific detail (which may be beyond the scope of this email service).

Although all medications have many potential side effects, thankfully most people do not suffer from them. For example, aspirin can hurt you or kill you in multiple different ways but we still advise millions of patients to take it daily.

You should see a good RLS doctor and try the various RLS medications (starting with the lowest dose possible, even 1/2 of the lowest dose if you can split the pill) and see if you can tolerate them. If tolerated, you can then increase them slowly as needed.

Most RLS sufferers can get excellent relief with proper treatment.


Sent: Monday, August 22, 2011 10:00 PM
Subject: Question about pain and RLS?

I've been recently diagnosed with RLS, PLMD and obstructive sleep apnea. My main reason for seeing the doctor was severe leg pain in my calves. The pain sets in when I sit in a chair too long and is really bad as I'm relaxing on my couch. I spend 4-5 days a week pacing until 4 am as this is the only thing that relieves the pain. The pulmonary doctor put me on .25 Mirapex to be taken half before dinner and the other half 1 hour before bed time.

The Mirapex works great for the PLMD and have not been twitching or kicking my wife since I started the medicine but does nothing for the pain. I called my pulmonary doctor to get an appointment but they can't get me in until October so they referred me back to my primary care dr. The primary care doctor knows very little about RLS so he looked it up on his computer and named off a list of medications that are supposed to help. He started me on gabapentin (300 mg at night), iron and Vicoprophen for breakthrough. I took the gabapentin on the first day and I felt drunk. I was dizzy, had a hard time walking to the bathroom without stumbling, very frequent urination and dry mouth. It had very little impact on the pain.

Is severe pain when resting part of RLS, I've read online that people have pain but the severity of mine seems is ridiculous. Is there a non narcotic medicine that seems to work with most RLS patients?

Some background info that may help. I've had leg pain since 2008 that I can remember. In 2008/2009 I was diagnosed with excursion compartment syndrome and had bilateral fasciotomy to release the pressure. Post surgery I began running and it felt like knives were being jammed in my ankle's. Another MRI showed the fascia was cutting off the circulation at the ankle so I went back in for 2 more surgeries and he cut the fascia all the way below the ankle. Since then I can run with no pain but the calve pain persists when resting.

I am an active duty Air Force flyer and I cannot do my job if I'm taking narcotics. Unfortunately it's the only thing that helps at the moment. Any recommendations or insight is greatly appreciated. On a side note, this website is a wealth of knowledge.

Chris

Medical Reply

It is not at all clear whether the pain you are experiencing is due to RLS or to something else like your previous surgery. If the pain comes on only at rest (simultaneously with your RLS urge to move) and improves/relieved by movement then it is likely due to RLS. Otherwise, it may not be related at all and thus should be diagnosed and treated appropriately.

RLS pain may be treated with opioids if tolerated and usually by trying several, one can be find that is well tolerated. Tramadol is a non-opioid (or at the worst, a minimal opioid) that also works well for RLS pain. Although you did not do well with gabapentin, the new drug Horizant (which turns into gabapentin) may still work much better and be better tolerated. Lyrica is another choice that acts of the same receptors as gabapentin/Horizant.


Sent: Wednesday, August 31, 2011 3:49 PM
Subject: Methadone for RLS?

I am a 31 year old mother of two that has suffered from RLS for almost 10 years now. My RLS was worsened with each pregnancy. I have been on Vicodin 10 mg for a little over 3 years. I have been having more symptoms even with 10 mg of Ambien added. I recently found a neurologist that would listen and he prescribed 5 mg of methadone to replace the Vicodin as well as Ambien.

I know that many RLS patients take Methadone when the approved RLS medications don't work but I am still concerned about taking something so potent. What is the difference between Vicodin and methadone. I know that it would be good to get off the daily acetaminophen that is in the Vicodin but are there other long term worries with the methadone? What dosage of methadone begins to cause concern?

Melissa Y.

Medical Reply

It is hard to compare the potency of Vicodin and methadone as they have different durations of action. Vicodin lasts 3-6 hours while methadone lasts 6-10 hours. Roughly speaking, methadone 5 mg should be as potent for pain relief (and likely for RLS as well) as 7.5 to 10 mg of hydrocodone (the active opioid in Vicodin) given over the same time period.

I typically go to about 30 mg of methadone per day and have found no long term issues including dependence/tolerance while the patient is under my care (which now includes about 20 years of experience).


Sent: Saturday, September 03, 2011 5:20 AM
Subject: How can I tell if Synthroid is helping?

I've had RLS several years, with symptoms getting a lot worse in the past year--I've rapidly gone from 2 mg Requip at night and .25 mg once daily to needing .5 mg every four hours, 4 am to 8 pm. Now, symptoms start after only 3 hours--full-body jerking and thrashing. I suspect augmentation, but don't know what to do about it. (I also have to take a lot of Neurontin.)

Recently I talked my PCP into prescribing Synthroid, since my TSH is mildly elevated (around 5). How on earth will I be able to tell if it's reducing my RLS symptoms, since they seem to be confounded by augmentation? If I try to cut back on Requip, it seems I'll get worse instead of better, no matter what effect the Synthroid might be having!

Sharon S.

Medical Reply

First of all, it is extremely unlikely that treating borderline low thyroid problems will have any benefit for RLS symptoms. Although there is a link that shows increased RLS associated with thyroid disorders it has never been demonstrated that treating the thyroid abnormality will help RLS (nor have I ever seen a case where thyroid therapy helped RLS).

It does sound like you are suffering from severe augmentation. Stopping or decreasing the dopamine agonist (Requip or Mirapex) is guaranteed to markedly increase RLS symptoms so your experience is very predictable.

The treatment for augmentation is to get off the dopamine agonist but this must be done very carefully. It typically needs a potent opioid (methadone,
oxycodone) for several weeks. After that time period, other drugs (Horizant, Lyrica) that may help to reduce or eliminate the opioid. This is usually a very difficult situation for most doctors and they are also very reluctant to use potent opioids.


Sent: Saturday, September 03, 2011 9:00 PM
Subject: Horizant

My doctor weaned me off Mirapex and gave me Horizant. I have had no trouble all day until  I take the pill after supper, then my legs start bother me for me for a few hours. Does that mean the pill does not work or need more mg? I like the pill because after a few hours I finally fall asleep. I go back to the doctor Tuesday

Lorraine P.

Medical Reply

Although Horizant is only approved for one tablet taken one time per day many studies have demonstrated that many RLS patients may need a higher dose or even more than one dose per day. Side effects (drowsiness, dizziness) may increase with a higher dose but if you tolerate the increased dose then that should not be an issue.

However, insurance companies may (or may not) pay for a higher dose as the FDA has only approved Horizant for only one pill per day.


Sent: Monday, September 05, 2011 9:11 AM
Subject: Re: Cymbalta and RLS

I need help. I had knee surgery to repair torn meniscus and after that RLS kicked in. I'm a 65 year old male. I had very minor RLS before surgery. Now it's every night. One .5 mg Requip at 7 and second one before bedtime offers temporary relief.

 Am I going to have to take this medication rest of my life? Will RLS go away? I had been taking Lexapro for 5 years but stopped that and now taking 75 mg Wellbutrin. Iron tests were negative.

Joe M.

Medical Reply

It is not uncommon for RLS patients to notice a significant worsening of their RLS symptoms after surgery or trauma. Although it is unpredictable whether the RLS will stay at its present level or improve (or unfortunately, even worsen), the chances are best that it will stay about the same as it is currently.

Changing from Lexapro to Wellbutrin should have been helpful for your RLS but some patients do not benefit from that treatment.

Even though iron tests are normal, the more sensitive serum ferritin test correlates better with RLS symptoms and although most labs report that a level greater than 10 or 20 is normal, RLS symptoms usually decrease when the ferritin level is above 50-75.

A Reply from Joe

Sent: Tuesday, September 06, 2011 12:30 PM
Subject: RE: RLS

This disease has left me feeling helpless and hopeless. Going off Lexapro has helped somewhat but the RLS symptoms persist daily. Iíll suggest increasing Wellbutrin from 75 mg to a higher dose. Maybe that will help?. The Requip helps somewhat but leaves me feeling very depressed. Mirapex causes back pain and increased urination.

My life has been turned upside down since my leg injury and surgery and ensuing RLS. Iíve seen three sleep doctors in St. Louis and one chiropractor. One doctor thought that once the knee healed that the RLS symptoms would go away. They havenít. Itís been 10 months since the surgery. I just donít know what to do. My life is miserable.

What have you learned about the new drug Horizant? How effective is it as a once-a-day medication for RLS?

Joe M.

Medical Reply

Raising the Wellbutrin dose may have a slight chance of improving your RLS but more likely it may only help any depressive/anxiety issues.

Horizant works very well for most RLS patients. Although it is only approved for once daily use (that is the only indication that was submitted for approval to the FDA), it actually works great when given twice daily for RLS symptoms that start in the morning.

Most patients (over 95% in my practice of very severe RLS patients) can get excellent relief of their RLS symptoms with proper care. You should not settle for less and seek out a knowledgeable RLS doctor (there are not that many around who really understand how to treat tough RLS cases) even if it means traveling.


Sent: Monday, September 05, 2011 2:09 PM
Subject: RLS and Sinemet?

I have had RLS for around ten years although it would only start some nights when I got into bed. Now, it has begun around seven each evening. I am on Sinemet which I just increased by taking two tablets instead of one and that seems to work ok. I also have to take another one six hours later. I am 63 and would like to find some others I could talk to and correspond with re this.

Valerie

Medical Reply

Sinemet is no longer used for RLS on a daily basis (it is ok when used for just occasional RLS symptoms) as it causes augmentation in almost all patients who use it. Augmentation is a worsening of RLS symptoms (after an initial improvement) caused by dopamine drugs like Sinemet. You should see a sleep specialist or neurologist who understands RLS and can change your medications to ones that are more appropriate for daily RLS symptoms or your RLS will get dramatically worsen in the next several weeks despite taking more and more Sinemet.

You can find a forum of RLS patients at the RLS Foundationís website at www.rls.org.


Sent: Thursday, September 08, 2011 12:32 PM
Subject: Klonopin

I have had RLS like my Mom did for many years. About 6 years ago I started on Mirapex and that helped for a long time. Then just quit working. It seems like after a bone marrow biopsy ( for cutaneous lymphoma} I was started on Iron 2x a day because my biopsy showed no stainable iron. After 18 months of taking iron and worsening RLS my ferritin was only 8 and my iron was low. I had also been on several rounds of Rituxan for the lymphoma during this time.

Anyway I had just started on Klonopin and the oncologist gave me IV iron. Within a few weeks I was feeling like a new person!!. No RLS and NO CHRONIC FATIGUE!!

It is now 5 months later and I feel so tired again and my RLS is back although I am still taking the Klonopin. Help! Should I try to taper off the Klonopin and start with Requip or Mirapex and hope they work again?

Jean S.

Medical Reply

Klonopin is really not an RLS drug but just a sedative/sleeping pill very similar to Valium, Xanax or Ativan. It does not treat RLS symptoms but rather helps RLS patients get to sleep which can be accomplished by much better drugs (Klonopin has a 40 hour half-life and thus stays in your system for way too long).

It is likely that the IV iron therapy is what helped your RLS rather than the Klonopin (if it was the Klonopin, then it should have worked with the first dose). RLS patients seem to lose iron much more quickly than everyone else, so it may be that you are low in iron again. Have them check your ferritin again.

It may be a good idea to get off the Klonopin as you have already suggested. Mirapex or even Requip may be reasonable but you may even want to consider trying the new RLS drug Horizant which works very well for many RLS patients.

















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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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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 97.
http://www.rlshelp.org/rlscomp97.htm
This web site was last modified on Thursday, September 08, 2011.
Cartoon above was created and drawn by Robert Van Den Berghe.
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