Patient letters on RLS symptoms and remedies- Page 107

 

Kicking RLS/PLMD Patient



Sent: Wednesday, April 09, 2014 1:22 AM
Subject: Antidepressants for RLS patients

How do you prescribe Wellbutrin without adding a sleeping pill? I have read that 1 in 3 have trouble sleeping on this med.

Would you lean more towards the Trazodone over Wellbutrin?

Robert G.

Medical Reply

Trazodone is a weak antidepressant and must be used in high doses to achieve that affect (making side effects more likely). It is used much more frequently at lower doses as a non-addicting type of sleeping pill but also has issues when used to aid sleep.

Wellbutrin can cause insomnia but it usually more limited due to increasing anxiety.

A Reply from Robert

Sent: Thursday, April 10, 2014 3:05 AM
Subject: Re: Antidepressants

If a RLS patient was suffering from anxiety/depression you would avoid Wellbutrin and trazodone and use a SRI/SNRI and treat the increase of symptoms of RLS with medication?

Robert G.

Medical Reply

I would typically recommend Wellbutrin if depression is the main problem but if the patient has significant anxiety issues, I would use it with caution or not at all. Trazodone typically does not help very much so if I canít use Wellbutrin then I will go to the SSRI and SNRI medications (realizing that I may make the RLS worse and then I will have to increase the RLS treatment).


Sent: Sunday, April 13, 2014 4:48 PM
Subject: Anti-motion sickness/nausea tablets?

Could you please recommend a RLS friendly anti sickness medication?

Kim W.
UK

Medical Reply

The Transderm Scop patch works fine for motion/sea sickness. For nausea alone, Zofran or Kytril would also work well. Otherwise, avoid all the over the counter and other prescription medication.

A Reply from Kim

Sent: Monday, April 14, 2014 3:52 AM
Subject: RE: Anti sickness tablets

My doctor has finally prescribed Zomorph (an opioid not available in the USA). As an anti-nausea medication he has suggested domperidone as being RLS friendly? Do you have any opinion/experience with the effect this drug has on RLS? Hopefully as my body gets used to Zomorph I will need less anti-nausea tablets?

Kim W.
UK

Medical Reply

Domperidone (which is not available in the USA) does not bother RLS and should work well for nausea. Zomorph should help RLS symptoms but can also cause nausea.

A Reply from Kim

Sent: Friday, May 09, 2014 7:37 PM
Subject: Mirapex withdrawal


I am on night 8 of since stopping Mirapex and have been doing ok using 60mg of slow release morphine. Tonight I dropped the morphine down to 40 mg and am having the night from hell (on UK time ). Have I reduced morphine too soon?

Kim W.

Medical Reply

Typically, I keep the opioid dose at a maximum of 30 mg per day. Methadone may work more effectively than morphine but that may be difficult to get prescribed in the UK. I am not sure why you currently need such a high dose (since most patients do very well on much lower doses of opioids) but it may take another week or 2 until the RLS calms down.

Most patients do find that they can reduce their opioid dose by about a week but I have seen patients take several weeks. I generally tell my patients to keep trying to reduce their dose every 5-7 days if possible. If might be easier to reduce by 10 mg each time rather than 20 mg.

A Reply from Kim

Sent: Saturday, May 10, 2014 1:28 AM
Subject: RE: Mirapex withdrawal

I didn't know the usual morphine dose was less than my 60mg a day. No chance of methadone here. Going to decide next week my new RLS treatment. Would ropinirole be a good idea? Neurotin and pregabalin don't work for me so it will probably have to be ropinirole. Is there anything else? They wont give me Neupro patch due to cost!

Kim W.

Medical Reply

Unfortunately, Requip is so similar to Mirapex that you will likely end up with the same problems. Therefore, we generally do not recommend a change from Mirapex to Requip.

You might try adding pregabalin to the morphine to see if it works enough to allow you to lower you dose of morphine. However, patients sometimes have to go up to fairly high doses (up to 300 mg per dose and sometimes twice daily).

A Reply from Kim

Sent: Wednesday, June 04, 2014 6:48 PM
Subject: RLS


I have been off Mirapex for around 7 weeks now. I take 60mg of Zomorph each evening which keeps my symptoms at bay. However I have tried to reduce but even going down to 50mg my legs start usually around 1am.If I can get down to 30mg I can use this as a long term treatment. I would have thought by now the withdrawals would be complete so any advice much appreciated.

Kim W.

Medical Reply

Your dose of Zomorph at 60 mg is quite high and 30 mg would be a more reasonable long term maintenance dose. It may be helpful to discuss adding Lyrica and seeing if that helps. The Lyrica may be started 2-3 hours before evening symptoms occur at 75 mg and increased by 75 mg every week until you get the desired improvement (or side effects limit any increase). If you have earlier in the day symptoms, then an earlier dose (similar to the above titration scheme) may also be helpful if tolerated.


Sent: Wednesday, April 16, 2014 3:40 PM
Subject: Re: Chronic and Severe RLS in 93-year-old (previous letter, 9/5/13)

My mom moved in with my sister in September 2013 at the time of the turmoil, (kind of against her will,) and has improved so very much since that time. Her doctor switched her med to Dilaudid and it has been wonderful, for now. She gets a little sleepy but for the most part it has been her saving grace and keeps her legs calm.

We really thought last summer she was checking out, but with the new medication (oxycodone didn't do it anymore,) she's a new (old) woman. What she'll do when this one has reached the end of its effectiveness is a scary thought, but for now we are grateful to have our 93-and-a-half-year-old mother healthy and fairly happy.

Sada P.

Medical Reply

I do use a reasonable amount of Dilaudid but it is not my first choice for RLS. However, a significant percentage of RLS sufferers will respond to Dilaudid even when they don't respond to other more commonly used opioids. Once patients respond, it is most common that they will continue to do well with the same dose of Dilaudid for life.


Sent: Monday, April 21, 2014 10:42 AM
Subject: Klonopin and bupropion xl for PLMD?

I am a 43 yr old male recently diagnosed with PLMD that occurs 16 times per hour. Would gabapentin and bupropion xl be a better combo for PLMD, or neither combo? My sleep doctor has tried me on Mirapex, Lyrica, Klonopin .50 mg. and now he wants me to take gabapentin 100mg along with .25mg of Klonopin at 8pm. My problem with all of these drugs has been that I'm terribly groggy throughout the whole day with very little motivation to do much of anything. When I try gabapentin by itself I don't sleep more than 5 or 6 hours and still feel tired during the day like I did prior to trying any drugs.

I had been put on Wellbutrin xl 300 mg a few years ago for add but it made me too edgy so I stopped taking it .I thought maybe the Klonopin at night and Wellbutrin xl in the morning might help with the groggy feeling and help me feel more motivated, like maybe the Wellbutrin would counteract the groggy effects of Klonopin?? I have no other reason than that for the combo of those 2 drugs.

Jason O.

Medical Reply

Your case is somewhat complex as we typically do not like to treat PLMS without RLS (we do treat the RLS which usually takes of the PLMS). It is very unclear whether ďpureĒ PLMS actually causes any real sleep disturbance (other than what was picked up on your sleep study).

Klonopin does not decrease the PLMS but rather prevents awakenings from the PLMS. It has a half-life of over 40 hours so makes most patients sleepy during the daytime. If you are being treated for the insomnia resulting from PLMS, then shorter acting sleeping pills like Ambien, Lunesta would be much preferred and much less likely to cause daytime sedation.


Sent: Thursday, April 24, 2014 10:54 PM
Subject: RLS issue

I was in the hospital 2 years ago after a gal bladder surgery because I got so sick. They were giving me narcotics for a week. I left rather abruptly with the dr's ok. So I was not tapered down off of whatever I was taking. I had spiders crawling in my legs that night so bad I was up all night and I have has RLS ever since. I have only tried natural supplements but I am pretty miserable every night. Is there any way to heal from this or am I destined to suffer with this my whole life?

Lisa M.

Medical Reply

It is not clear why the RLS started after surgery but it is common for patients to notice a worsening (or triggering) of RLS symptoms after trauma (like surgery) to the body. RLS is easily treated so you should not suffer. Typically, natural supplements do not help RLS symptoms.

Patients with RLS should be symptom free with proper treatment. You may not need to see a real RLS specialist at this point to get appropriate therapy.

A Reply from Lisa

Sent: Friday, April 25, 2014 9:30 AM
Subject: Re: RLS issue

My symptoms started with my legs getting irritated around 11:30 PM at night when I would be getting ready go to bed. Then I was able to sleep with no problems at all. Then the problem started happening earlier in the evening it started happening if I was sitting in a play or movie. A few weeks ago I got really really bad where I was kicking and flailing in my bed at night and couldn't control my body. It was affecting my arms and torso also.

It is a tiny bit better now but it still bothering me at night it's there when I wake up in the morning it's there when I go to movies. I have been "dealing" with it for 2 years now with no meds.

My quality of life I would say is at about 50%. I don't want to be drugged up just relieved of symptoms if the RLS.

Lisa M.

Medical Reply

RLS tends to be there for most patients entire lifetime. It also gets worse slowly over many years/decades. Some patients have spontaneous remissions but that is more unusual.

There are enough RLS medications available that most patients should get excellent relief without feeling drugged.


Sent: Sunday, April 27, 2014 12:54 PM
Subject: Question about herbal remedy

I'm going to contact my doctor tomorrow regardless, but I wondered if maybe you could confirm/deny some issues I'm having currently as being the herbal supplement or possible augmentation from the Mirapex.

I started .25 mg of Mirapex a little over a year ago for severe RLS that had an abrupt onset thanks to a year of being a guinea pig for countless anti-depressants and antipsychotics. It has worked absolutely flawlessly for me throughout this whole time ... up until the night before last.

A friend suggested the herbal supplement rhodiola (she takes it, has mitral valve prolapse like I do, and assured me it would be fine). The brand is Nutrilite, I do not know the dosage. I know I was supposed to take two a day, but I only took one and quit after the second dose because it gave me heart palpitations! However, that night and last night I have been awakened at around 0700 hours with my RLS kicking in despite the Mirapex I take (usually around 2230 because I tend to stay up pretty late). I can get up and work the muscle wherever it's flaring up at, and then go back to sleep within an hour but then it comes right back two hours later. I'm sitting here now typing this and I can feel that sort of creepy sensation like it wants to flare up even now.

I'm thinking the Rhodiola caused it to flare, and I'm wondering how long before it goes away. But then, I've been at the lowest dosage for over a year on the Mirapex so maybe it's time to titrate up a tad?

I just don't know, and I'm sorely disappointed that my RLS has reared its ugly head again on me. I suffer from PTSD, so I don't sleep well as it is - I don't need anything helping me to not sleep.

Raven W.

Medical Reply

Not that much is known about rhodiola. According to WebMD, ďRhodiola is a plant. The root is used as medicine. Rhodiola is used for many conditions, but so far, there isnít enough scientific evidence to determine whether or not it is effective for any of them. The potential side effects of rhodiola are not known.Ē. Therefore, despite your friendís best assurances that the product is safe (based entirely on her experience and perhaps the limited experience of a few other of her acquaintances that have tried it), it clearly seems to have caused problems for you.

Why or how the rhodiola has caused your RLS to flare is a mystery (and since the product is not being studied in a scientific manner), and we will likely never find these answers. Augmentation usually occurs slowly (over weeks to months) so it is much less likely that augmentation is the issue (although anything may be possible). It is unclear how long the worsening of your RLS may continue since we donít understand the mechanism involved.

You dose of Mirapex is not the lowest (I generally start my patients at .125 mg/day or Ĺ your current dose) and I would be extremely cautious about increasing your current .25 mg dose. I currently recommend (in my books and articles) that Mirapex should not be taken at more than .25 mg/day. Higher doses significantly increase the risk of augmentation (and if you currently have augmentation, then increasing the dose provides only temporary relief then further worsens the RLS). At this point, it may be worth considering an alpha-2delta drug like Horizant.


Sent: Monday, April 28, 2014 11:16 AM
Subject: Advice on PLMD treatment

I am 43 and have had PLMD and fibromyalgia for at least 10 years and both have grown markedly worse in the last two years. In the past, my wife was aware of the kicking and the lack of quality sleep was clearly taking its toll on me but I was usually able to get to sleep easily and sleep through the night. In the last year it became nearly impossible for me to get to sleep due to the insistent urge to move my legs as soon as I am about to fall asleep. My movements once asleep have also become more violent and include arms and head now and wake me repeatedly.

Ambien and Sonata do nothing for me. Amitriptyline immediately worsens my PLMD. Tried Tramadol and Lyrica for my fibromyalgia. Tramadol actually made my PLMD worse and did very little beneficial for my fibro (didnít help that my doctor was giving me an SSRI at the same time and was lucky not to get Serotonin Syndrome). Lyrica caused a huge personality change into an angry and suicidal person. Withdrawals from both meds were horrific.

After much research on your site and others I finally went to my rheumatologist and asked him for Mirapex which was a miracle for almost 5 months. Completely stopped my movements with no side effects at 0.125 mg. The Mirapex has stopped working entirely and I tried a higher dose of 0.25 mg with no additional benefit and experienced strong chest pains and hallucinations. Iíve gone back to 0.125 mg only to avoid withdrawals and have been using my very limited supply of Vicodin to get to sleep the past few nights. Vicodin seems to work quite well but I now have nothing for pain during the day and will exhaust my supply well before my refill is allowed. Opioids seem to be one of the few medicines I can tolerate but my doctor is extremely reluctant to prescribe them. After years of suffering from fibro pain he finally prescribed me Vicodin last December and I get 45 pills for 3 months. Using Gabapentin terrifies me since I had such a terrible reaction to Lyrica so Iím not sure what else to try.

My rheumatologist knows nothing about PLMD except what I tell him but is willing to try to help me. At this point, I feel like I really need an expert to treat me as it is severely affecting my sleep, mood, fibromyalgia and relationships and many of the top line drugs either donít work or give me intolerable side effects. Unfortunately I am located in Colorado and canít find anyone who is an expert on treating PLMD.

One sleep center that seems fairly expert wants to charge $2,000 for a sleep study. Since my wife has been studying my sleep for over a decade this feels like a complete waste of time and money to me. Does a sleep study seem worthwhile to you? Should I just stop the Mirapex or will I get the withdrawal symptoms even at this low dose? As seems to be common for fibro patients I seem especially sensitive to medicine side effects and withdrawals. Am I a good candidate for seeing you?

The only prescription meds I take are Vicodin (5/325), Toradol 20mg occasionally, Flonase, Claritin and Mirapex 0.125 mg nightly. Got off all antihistamines and anti-depressants that could aggravate PLMD over a year ago. Donít drink, am vegetarian and have found no noticeable affect from caffeine on my condition. My serum ferritin was checked a few weeks ago and is at 53. I am taking 3 ferrous sulfate 325mg oral per day with no noticeable effect yet.

Dan C.

Medical Reply

It is very difficult to formulate treatment plans for patients who have PLMS without RLS. As you may already be aware, many (likely the majority) of sleep/RLS specialists believe that PLMS is not an actual disorder (they thus do not like the term, PLMD) and should NOT be treated. There is no medical evidence (yet) that treating PLM results in better health/daytime well being and that the PLMS problem actually causes daytime consequences. Part of the problem may be that there are very few studies on pure PLMS patients (without RLS) so we must draw our conclusions from very meager scientific data and some of our anecdotal experience.

The other issue is that many of the few PLMD patients that have been treated with dopamine agonists, ultimately get RLS and augmentation of the RLS and PLMS. Therefore, the problem may actual get worse with time rather than better. The lack of response to Mirapex with time in your case may often be the beginning of that augmentation process (which may have become evident if you had been able to keep increasing the dose).

I am not sure how much benefit you would get from doing a sleep study other than documenting the amount of PLM and PLM arousals that occur on that given night. It may be helpful to rule out concomitant sleep apnea or other sleep disorders but otherwise, I am not sure how even I would use this to guide your treatment. One would need follow up sleep studies (more expense) although one could follow the response to treatment with actigraphy (relatively inexpensive motion detector device).

Opioids generally have a modest effect on PLMS but some may get more benefit. Since it is only the hydrocodone that helps, the acetaminophen (Tylenol) part can only cause side effects if taken in the long term. We generally recommend ďpureĒ opioids (like oxycodone, methadone) but there is much less likelihood of your doctors prescribing those more potent opioids.

We do often recommend sleeping pills (they do not eliminate the PLMS but do decrease the arousals from PLMS) but you have already failed Ambien and Sonata. Lunesta is another choice otherwise you may have to consider the real benzodiazepines like temazepam.


Sent: Wednesday, April 30, 2014 8:13 PM
Subject: Re: RLS

My RLS is so bad that from Saturday night to Monday morning I sleep exactly two hours and fourth minutes. My problem is twenty four seven. Day or night no difference, constant. My primary care provider prescribed pramipexole .125 mg three times a day. This is my very first treatment for this condition.

If this will work how long must I wait? 

I have chronic pain and have had it for the last fifty years. I was taking pain medicines such as oxycodone and morphine but have stopped. My choice because I often wonder what is and has been done to my system. There has to be better days coming.

Lester S.

Medical Reply

Your situation is a little more complex than a new RLS patient starting medication. You have actually been treating your RLS with your opioid pain medication (oxycodone, morphine) and these are amongst the most effective of all the RLS treatments. If your RLS is already occurring around the clock, you have a very severe case and you may need the expertise of a real RLS expert.

One of the key issues in your current treatment is that you are not getting great relief with Mirapex (pramipexole) at a total of .375 mg/day. I currently recommend that the maximum daily dose of Mirapex should not exceed .25 mg (even though the PDR and product information sheet state that up to .5 mg/day is approved) due to the increased risk of augmentation (a worsening of RLS from taking a dopamine agonist like Mirapex). It is most likely that that you current doctor will want to increase your dose of Mirapex since you are not getting relief and the higher doses of Mirapex may further increase the risk of augmentation (and may not resolve your RLS issues).

You may want to discuss the use of combination therapy with your doctor (or find an expert who has the expertise to treat difficult RLS cases and understands the issues of augmentation). Opioids and alpha-2-delta drugs (Horizant, Lyrica) taken together may help you achieve relief from your RLS misery and allow you to live a normal life.


Sent: Thursday, May 01, 2014 5:03 AM
Subject: RLS not doing well with Requip?

I am a 57 year old female. I feel I have had RLS and many sleepless nights for a large period of my life. I had a sleep study done about 10 years ago after spending most nights walking my house. The sleep study confirmed I have RLS. I was given Requip 1 mg which helped right off the bat with no side effects:) I felt like my whole life had changed.

After about five years I was not getting the same effect so it was increased to 2 mg. That worked for a year or so then I need 3 mg. My symptoms got worse and started earlier in the night. I was waking up around 3:00 or 4:00am with symptoms and my arm would ache. So I starting taking 1 mg at 8:00 and then 3 mg more at 11:00 so I could make it thought the night. Which worked for awhile. So I am now having the same thing happen again. I have earlier symptoms ( sometimes in the day), I go to sleep but only for a few hours then I am awake for the night. 

I have extreme discomfort, leg movement and arms that ache. I have also been taking Trazodone for the past ten years to help with sleep. It was given to me to use when I had extra trouble getting to sleep. I started with 50 mg when needed. I now seem to need it every night and take 100mg. But that does not seem to be of any help either.

So my question is do I increase my Requip again and if so to what dosage and what time/times should I be taking it?  Do I stop or increase my Trazodone? Do I consider another medication? I am so bummed because I really had hoped Requip was my answer.

Connie C.

Medical Reply

The problem that you are experiencing is called augmentation which is a worsening of your RLS due to taking a dopamine drug (like Mirapex or Requip). Although the drug helps initially and with each increase in the dose, each further increase in the dosage adds fuel to the fire causing the augmentation process to accelerate. Therefore, RLS experts strongly advise that patients with augmentation should not keep increasing their dopamine agonist dose as that will ultimately result in heightened problems with RLS. Due to these concerns, I currently recommend that the dose of Requip should not exceed 1 mg per day and Mirapex not exceed .25 mg per day.

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms.

It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.


Sent: Friday, May 02, 2014 12:25 AM
Subject: Severe RLS in an MS patient following knee replacement

Iíve been struggling with RLS for the past six years. I have Multiple Sclerosis and the RLS happens in only one legóthe left oneówhich is the same leg that I have the most MS symptoms in. From the MS I have lesions in the cervical spinal cord on the side that affects the left leg.

In January I had a total knee replacement in that left leg because of severe arthritis in that knee.. While on pain medications following the surgery the RLS disappeared but upon reducing the pain medications I began having severe spasticity in the left leg which was diagnosed as a new MS symptom and possible flare-up. But along with the spasticity I am now having unusually severe RLS. If I try to rest any time after 4pm or so I began having the typical symptoms of RLS. It makes me almost frantic and I am forced to walk around the house or bicycle on a recumbent elliptical bike sometimes for hours.

In the years before the knee replacement the doctor prescribed Mirapex which helped for about a year and then stopped helping. Then we tried Requip which also worked for about a year but then we had to increase the dosage and I had ďaugmentationĒ and began having symptoms during the day. I was then given a Neupro patch which helped considerably until I developed a severe skin rash under the patch and had to discontinue.

Right now Iím prescribed Neurontin for pain, and Baclofen for the spasticity and Iím still taking 10mg OxyContin at bedtime but nothing relieves the RLS until a few hours after I take the OxyContin. I was also prescribed an iron supplement as my blood test showed iron levels were low.

So from around 4pm to around 2am Iím miserable. I usually have to eat standing at a counter while tapping my left leg. I canít watch TV, go to a movie, go to the theater, or drive anywhere longer than 15 minutes. Some days I will also have the RLS during the day if I try to drive or be a passenger in a car. So I can no longer travel. I took one plane flight and had so much trouble Iím afraid to ever try that again. To try to manage the symptoms I take warm baths and I also I do a regimen of stretches five times a day for the MS and will repeat these over and over again when the RLS hits.

I take the OxyContin at 11 pm. I will usually be able to fall asleep at around 2am but often will wake up in an hour or two with leg spasms and the need to move the leg. I then get up and walk or bicycle for 20 minutes then I can get to sleep for an hour or two. This goes on all night.

My sleep specialist seems to be frustrated with me and has suggested he has nothing left to try. Iíve lately been struggling with depression because so much of my life is being controlled by the RLS and it has robbed me of many things I enjoy in life. Iím also feeling very sleep deprived.

Are there any other treatments I can suggest to my doctor?  I found some information regarding new extended release gabapentin called Horizant. Do you know if that is effective?

Lois V.

Medical Reply

For severe RLS such as yours, the opioids seem to work the best (as you have already noted). I find that methadone works better for most (but obviously not all) RLS patients and you might want to discuss switching the OxyContin to methadone (5-10 mg). However, you may need up to 3 doses per day (but smaller doses earlier in the day).

Horizant typically gets gabapentin into the body more reliably than regular gabapentin but you may need more than one pill per day (it is approved at only one pill per day for RLS). That may help neuropathy pain from MS and your RLS discomfort and allow you to use less of the opioids.

Low iron levels (best measured with serum ferritin that should be above 75 for RLS control) can be responsible for your worsened RLS symptoms. It is often difficult to get high enough blood iron/ferritin levels with oral iron so you and your doctor may want to consider intravenous iron infusion therapy.

A Reply from Lois

Sent: Sunday, May 04, 2014 2:00 AM
Subject: RE: Severe RLS in an MS patient following knee replacement

Iím hoping you can help me shed some light on recent developments. I could not get an appointment with my neurologist (on vacation) and so talked to her nurse practitioner. She said it was important to try to sort out what the problem wasówas it spasticity from the MS or RLS? (IMO itís both and they trigger each other but I followed her advice.) She said to increase the ropinirole to .25mg in the am and 1mg at night. I started that dosing on Friday and it made the RLS much worse rather than better. Iíve taken this dosage for two days now and Iíve only had around 6 hours of sleep total for all two days. I walk until exhausted, sleep a half hour and then the RLS comes back and Iím up walking or biking again.

Obviously the Requip doesnít help me. But I donít think that means itís not RLS but just spasticity which Iím sure the nurse will say. And I donít know what they can do for the spasticity anyway since the Baclofen doesnít seem to be working for that!

Is my logic correct that you canít assume itís not RLS just cause the Requip makes it worse?

Lois V.

Medical Reply

Although Requip will improve/relieve RLS symptoms in over 90% of naÔve patients (those who have never tried a dopamine agonist like Mirapex or Requip), for patients like you who have already been on it and failed the drug, outcomes are very unpredictable. Therefore, the trial of Requip (and even if you were to respond, you might need a much higher dose which is also not a good idea), is a very crud and unreliable test in your case.

A simple way to distinguish between RLS discomfort and MS spasticity is whether there is an urge to move with the pain. If there is an irresistible urge to move, then it is most likely RLS otherwise MS is more likely. If walking/movement makes it better, then RLS is also favored. However, with spasticity, there may be some overlap but the urge to move is much stronger in RLS and the relief more profound with RLS also.


Sent: Sunday, May 04, 2014 12:36 PM
Subject: Do I have RLS?

I am a diabetic and Peripheral Neuropathy. I had an Aortic Valve Replacement in 2011. I have had my left knee joint replaced. My left leg feels tight and usually look swollen. Almost every day I have and episode of painful, unbearable, stabbing like electrical shocks in my lower legs, mostly the left. These feelings cause my to jerk and my legs canít be stopped from kicking, often high in the air. When the attacks started in 2011, they were mostly at night after I had gone to bed; now they start any time from noon to 4 oíclock. I can sometimes tell that I am going to begin when my legs have a twitching feeling. If I have not taken Pramipexole, 1 MG, I will definitely have a session.  I can walk and\or take a hot bath to relieve the pain. I often take and additional half dose if the pain gets worse during the evening. Once a session starts, it takes some time to get it under control.

The neurologist who started me on Pramipexole has left the area. Since I have been taking it, I get so sleepy that I often sleep all evening off and on and then cannot sleep at night. I often sleep only a couple of hours after going to bed. I cannot drive because I fall asleep almost every time I get in the car. At one time I when taking higher doses I experienced a lot of confusion. During the times when I am not having attacks, I can do anything I want; golf, yard work, etc..

I was admitted to Cleveland Clinic for testing. They called my condition seizures but determined they were not neurological. After monitoring me for 24 hours, during which time I had hours of uncontrolled movements and pain, they decided that I did not have RLS, Myoclonus, Epilepsy or PLMD. They determined my problems were caused by a mental disorder and suggested I be treated for ďconversion disorderĒ by a therapist
who specialized in cognitive behavioral disorder. They said I should get off of Pramipexole. I do not agree with them.

Other medication I have tried are clonazepam, trazodone, Temazepam, Cyclobenzaprine and just last night took my wife's Ultram after reading some of your correspondence on line.

I continue to have daily episodes and feel that they stem from my calf muscles. I donít know where to go for help. Donít see any reason to see another neurologist but donít know what type of doctor to turn to. From reading you web site it sounds like I am a lot like your other readers.

Ron H.

Medical Reply

It does sound like you have RLS/PLM (the leg kicks may be PLM that are very often associated with RLS). The positive response to Mirapex (pramipexole) would also strongly support a diagnosis of RLS/PLM. However, you can decide for yourself by reviewing the following diagnostic criteria for RLS:

1) An urge to move the legs, usually accompanied or caused by uncomfortable and unpleasant sensations in the legs. (Sometimes the urge to move is present without the uncomfortable sensations and sometimes the arms of other body parts are involved in addition to the legs.)

2) The urge to move or unpleasant sensations begin or worsen during periods of rest or inactivity such as lying or sitting.

3) The urge to move or unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.

4) The urge to move or unpleasant sensations are worse in the evening or night than during the day or only occur in the evening or night. (When symptoms are very severe, the worsening at night may not be noticeable but must have been previously present.)

5) Mimics of RLS (like neuropathy, leg cramps, etc.) which may be harder for you to do but a good movement disorder neurologist should be able to figure it out.

The other issue that makes this more likely to be RLS is that the Mirapex helped initially but caused augmentation of problems which is very common with high doses of Mirapex. Augmentation which is a worsening of your RLS due to taking a dopamine drug (like Mirapex or Requip). Although the drug helps initially and with each increase in the dose, each further increase in the dosage adds fuel to the fire causing the augmentation process to accelerate. Therefore, RLS experts strongly advise that patients with augmentation should not keep increasing their dopamine agonist dose as that will ultimately result in heightened problems with RLS. Due to these concerns, I currently recommend that the dose of Requip should not exceed 1 mg per day and Mirapex not exceed .25 mg per day.

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms.

It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.

The suggestion that you are suffering from a conversion reaction seems a little odd but then I have not examined you personally so cannot say that it is incorrect. I would seek out a doctor who is considered an expert in RLS and perhaps also in movement disorders to sort out your problems.


Sent: Monday, May 05, 2014 4:31 PM
Subject: Amantadine for RLS?

My doctor has prescribed 100 mg of Amantadine to be taken at night for my RLS. This is in addition to the hydrocodone that is the main RLS drug I have used for years. I have read a little about this Amantadine and the possible side effects are scary. Do you have any experience with this drug? Do you think it would safe and helpful?

Paula R.

Medical Reply

There is only one study in the literature (performed in 2000) that evaluated amantadine for treating RLS. The study was an open-label study (doctors knew which drug the patients were receiving and no placebo group) on 21 patients who did benefit from the drug. However, there is very little experience otherwise for the use of amantadine for treating RLS and I would therefore recommend considering the newer drugs that are FDA approved for the disease. Neupro and Horizant are currently the preferred drugs although they are more expensive than the older, generic Requip and Mirapex.

The other issue is that hydrocodone is always combined with another drug (typically acetaminophen or ibuprofen) that does not help RLS and therefore you are exposing yourself daily to a drug that cannot help you but puts you at risk of developing side effects which include liver or kidney damage. Most RLS specialists prescribe "pure" (not combined with another drug) opioids like oxycodone or methadone when an opioid is deemed necessary for treatment.


Sent: Monday, May 12, 2014 7:42 AM
Subject: Mirapex 2 mg for 17 years, how to get off?

57 year old married female with RLS. Diagnosed in 1997. Started using Mirapex in 1997, 17 years. I have been on 2 mg of Mirapex for several years.

For the past 5 years I have been to several doctors and hospitals to find out what's wrong with me. I continue to get worse. A few doctors mentioned Mirapex and my nausea and double vision. They mention it and that's all. My husband, however, through the years has made comments that I need to get off Mirapex. My reply has always been no. Mirapex was my wonder drug for my RLS. Now it's become a wonder drug in the respect of I wonder if this if from the Mirapex.

My mental state of usefulness is impaired from something that I am having trouble functioning. I can't remember things. I will drive somewhere and its not where I wanted to go. Close...but not exact. The catcher is, I won't know how I go there. What roads I took.

I have had so many tests done and they all come back pretty normal. No explanation except the Cleveland Clinic in Ohio was having me go get tested for Dementia, Depression, Anxiety, or Somatization.

When I go back to the doctors that mentioned the Mirapex and explain...they think I'm crazy. They really have not looked into the side affects.

To the point! I need help! I'm sometimes taking and extra .5 mg earlier in the day and then 2 mg at bedtime. I sleep only 2-4 hours at night. I take Claritin D and a 5 hour energy every day just to be able to function. The lack of sleep at the present time is getting overwhelming. I to the point of not functioning.

I want off. Everyone has said I would have to do it under supervision. My residence is in Floral City, FL where I live 10 days out of the month. The remaining days of the month I live in Indiana, PA. Since I am mostly in PA, a doctor there might be best. If I have to, I won't come to FL once a month till I get straightened out.

I'll admit, I'm scared to death to do this. Was thinking about cold turkey just to get it over with but someone said about Neuroleptic malignant syndrome (NMS). I have no clue what I'm nor my family is in for.

Carla C.

Medical Reply

I cannot say that the Mirapex is responsible for all your current problems but it certainly could be causing or worsening many of them.

Your dose of Mirapex is very high. The current general recommendation is to not exceed a daily dose of .5 mg and my personal recommendation is to not exceed .25 mg per day. The worsening of RLS while on Mirapex is called augmentation and the treatment is generally to stop the Mirapex. However, as you already know, that stopping without other treatment is extremely difficult. It typically requires potent opioids (oxycodone, methadone) and a doctor who has some experience with this problem.


Sent: Monday, May 12, 2014 8:51 AM
Subject: WED/RLS

I am a 72 year old female and have had RLS for over 30 years and have RLS every night without fail unless I am medicated. My mother also had RLS and my daughter is beginning to show some signs. I have taken Requip and then Mirapex for years and developed the impulse control disorder and have gained over 30 pounds, bought too many things on the Internet or at stores and have trouble with my brain feeling foggy.

I tried going cold turkey off the Mirapex before and my doctor would not give me the Oxycodone and I had a period of 4 days when I could not sit or lay down and had to keep moving. On the fourth night I fell asleep while walking and walked straight into a wall and banged my head pretty hard. The next day my doctor gave me a few Oxycodone and then talked me into going on a low dose of Mirapex and a low dose of Xanax. Now, only a few months later the Mirapex no longer worked.

So here I am: I quit the Mirapex 11 days ago and my doctor provided me with some Oxycodone per your information. I have been taking the Oxycodone (5 mg) every 8 hours and two (10 mg) at bedtime since I quit the Mirapex. I just dropped the morning Oxycodone so I am now taking it twice a day: one 5 mg late afternoon and two 5 mg at bedtime. I seem to be doing better.

What do I try next to get me off the Oxycodone and treat my RLS? I do not want something that will make me gain weight or make my brain foggy and I certainly don't want any more dopamine. I am hoping that I will finally be able to start losing weight. I am wondering what medication would you suggest for me?

Rae L.

Medical Reply

I generally suggest waiting for about 2 months after stopping Mirapex before making a decision about changing medications. The RLS should continue to improve and you will find that you need less of the oxycodone to treat your symptoms. At 2 months, you may be on a very small dose of oxycodone (5-10 mg per day) and can then decide whether you want to stay on that dose or add other medication. I have many patients who stay on low dose opioids for decades without any need to increase their dose or other significant issues.

If you want to further reduce your oxycodone, then adding Horizant or Lyrica may help accomplish that goal (but may cause some weight gain). Some patients may be able to completely eliminate their opioids while others may be able to further reduce their dose.


Sent: Wednesday, May 14, 2014 10:32 AM
Subject: My Restless Leg Syndrome

I am an active 78 year old male in good health. I have had RLS nearly all of my adult life. During the early years of the condition I explained my symptoms to my then primary care doctors. They offered suggestions as to prescription drugs which might alleviate the symptoms but there was no diagnosis of RLS until about 25 or 30 years ago.

I then found a sleep specialist who did diagnose my condition as RLS and gave me a prescription for Mirapex with a daily dose of .125 mg. I have been on that drug (now generic, Pramipexole) ever since but the needed dosage has increased to 3mg and as of recently requires supplementation with 600 mg of Gabapentin. Even at those high doses RLS symptoms still awaken me some nights
The progressive nature of RLS and the corresponding medication dosage increases have been a concern for some time.
The side effects are edema of the lower limbs and feeling unstable while walking.

To compound my sleep problem I have insomnia for which I take zolpidem (Ambien). The prescribed dose is 10 mg but I cut the tablet in 4 equal pieces and take them between sleep periods of varying duration. Taking the entire 10 mg at bedtime results in no more than 2 to 2 1/2 hours of sleep.

I have gone through your website and found medications which could be suitable alternatives to the Pramipexole/Gabapentin combination which appears to be coming to the end of its usefulness. One in particular is Methadone. Based on the information provided perhaps it could replace both current RLS medications and the zolpidem as well.

Richard A,
Tampa FL

Medical Reply

The problem that you are experiencing is called augmentation which is a worsening of your RLS due to taking a dopamine drug (like Mirapex or Requip). Although the drug helps initially and with each increase in the dose, each further increase in the dosage adds fuel to the fire causing the augmentation process to accelerate. Therefore, RLS experts strongly advise that patients with augmentation should not keep increasing their dopamine agonist dose as that will ultimately result in heightened problems with RLS. Due to these concerns, I currently recommend that the dose of Requip should not exceed 1 mg per day and Mirapex not exceed .25 mg per day (and you are currently at 12 times that maximum dose!).

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms (so you are correct for considering methadone as a reasonable choice to replace pramipexole).

It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.

Your sleep problems should improve considerably once the RLS is controlled.

A Reply from Richard

Sent: Thursday, May 15, 2014 6:04 AM
Subject: RE: My Restless Leg Syndrome

I will ask my sleep specialist to follow this recommendation. Just for clarification, I should start a Requip dose of 1 mg combined with .25 mg Mirapex (I do not take Requip now). My combination now is Mirapex and gabapentin; so I would be replacing the Gabapentin and Mirapex with Requip and Mirapex, both at low doses, and adding Methadone for a period of weeks or months until the augmentation process is under control.

Richard A.

Medical Reply

It seems that you have misunderstood my suggestions. In the second paragraph, I state ďgetting off the dopamine agonistsĒ which includes both Mirapex and Requip. Once stopped, these 2 dopamine drugs should not be used ever again as they will cause the augmentation problem to recur (often very quickly).

You can stay on your gabapentin for now but the suggestion is to stop the Mirapex and replace it with an opioid like methadone. After a few months, the gabapentin may be increased (or better yet, a change to Horizant or Lyrica which are usually more effective) which may help you reduce the dose of the opioid.

A Reply from Richard

Sent: Friday, May 16, 2014 6:55 AM
Subject: RE: My Restless Leg Syndrome

I tried Horizant by itself but it acts too slowly for short term relief. Is it OK to use Horizant with moderate dose (600mg) of gabapentin to cover both immediate and delayed onset of RLS? This is only until I can get to my sleep doctor to make the changes you suggested.

Richard A.

Medical Reply

I do have many patients that add gabapentin (due to its quicker onset of action an shorter duration) to Horizant. However, you should check with your doctor before adding medication (since he knows you much better).


Sent: Friday, May 16, 2014 9:05 AM
Subject: Severe Restless Legs

I am a 36 year old female and I have suffered from restless legs since I was 15. I was always told by doctors as a child that it was psychological or I just needed more exercise during the day. I was getting plenty of exercise. I was anemic off and on but it never seemed to affect my restless legs. As I got older and had to have surgeries for numerous things, I noticed narcotic pain medication helped relieve my restless legs one hundred percent. I was put on 10mg of methadone for severe back pain in 2005 and I experience complete relief without all the side affects of typical pain medication but was taken off of methadone when the pain was gone.
By the time I was 25 I had tried Requip and Mirapex and multiple sleep medications with poor results.

It all became uncontrollable after I had to have emergency brain surgery to remove a brain tumor in 2007 when I was 29 years old. I was put on 20mg of Percocet every four hours for six months. I experienced no restless legs during that time but when they started to taper me off of Percocet my restless legs were back with a vengeance. Before this, my restless legs were really only an issue in the evening and at night. Now, it is day and night and gets so bad I rock back and forth on the floor and throw my legs around, sometimes for ten hours causing me to stay up for 24 hour periods frequently. I have also tried Tramadol off and on and caused severe nausea and sweating.

I experienced such severe withdrawals from pain medication, I had to go see a different doctor to be put on something called Suboxone to help. From that point on, sadly, I have been labeled a drug addict as Suboxone is used for people addicted to narcotics and not much else. I took Suboxone on and off for two years along with trying Sinemet and Hydroxazine with little to no results except feeling drugged all the time.

I gave up seeking help for a couple of years but that has led to severe depression. Last year I was put on Gabapentin for migraines and that helped with the restless legs for a few months but not anymore. A few months ago it became so bad and caused such sadness in my life I picked up researching restless legs again, hoping something new had come out. With my doctors knowledge, I started taking magnesium, iron, gabapentin, a multi-vitamin and melatonin drops at night. No help. Last month I decided I wanted to try Mirapex again. Within an hour of taking it my legs felt so bad I felt like I was going through full withdrawals again from Percocet.

It took my body 48 hours to feel ok again and now I am scared to try Requip. From what I have read, methadone is my only real solution and it is cheap. The only problem with that is that I have been labeled a drug addict and a doctor won't put me on methadone. We have methadone clinics but they are for heroin addicts and I would have to lie and that's not going to happen.

I am at the end of my rope! I have even bought something that runs electrical currents through my legs and that didn't help either. I feel I have tried everything and the only thing that brings mild relief is a violent leg rub from my husband. He picks up and drops my legs and karate chops my thighs while stopping and massaging my thighs. It looks ridiculous, its exhausting for him to do and it only helps during the time they are being rubbed. As soon as he stops, my legs want to go again. I have even daydreamed that I could have my legs amputated. Yes, most days I would rather be wheelchair bound than to continue like this. It is ruling and ruining my life. There are no doctors in the Seattle area of Washington state that seem to have any extensive knowledge on the subject of restless legs, thus causing a lack of compassion. I may have forgotten a few things that I have tried but this is most of my experience. You are my only hope.

Thank you for taking the time to read about my condition, I don't see many stories where their restless legs have taken control of their entire lives so I feel quite alone up here in Washington.

Exhausted and depressed,
Michelle

Medical Reply

First of all, you are not alone in your RLS misery as there are many similar patients who have experienced problem lives just like you. If you read enough of the letters, you should be able to find quite a few. However, with proper treatment, most all RLS patients should lead normal lives without much if any annoying RLS symptoms.

By the way, hydroxyzine is one of the drugs that makes RLS worse so should be avoided (check our list of drugs that worsen RLS and print out our RLS medication alert card that lists all the drugs to avoid and their substitutes). Even amputating your legs (which I am sure that you would not really do) might not help your RLS as you could easily experience ďphantom RLS discomfortĒ.

Although there are likely other things that could be done, part of the mainstay treatment of your RLS may have to include opioids. As you may have read, I prefer methadone for most of my patients as it seems to work the best for RLS with the fewest side effects. If given in appropriate doses (which are typically much less than for pain) by a knowledgeable doctor, tolerance/dependence/addiction should not happen.


Sent: Sunday, May 18, 2014 1:30 AM
Subject: Oxycodone and OxyContin

It appears I have reached the point again where the treatment of my RLS needs to change. All of the regimens used over the years work for a time, but most of the time side effects are so severe I have to make a change. A combination of Oxycodone and Horizant is my most recent plan, but side effects from Horizant have reached the danger zone. Horizant has caused daytime sleepiness (occurs about 15 hours after taking) that I have actually dozed off at work and once while stopped at a traffic light. It has really interfered with my ability to think clearly while working, again the side effect manifest itself about 15 hours after taking a dose.

I have read that is one of the rare side effects of Horizant, so I am convinced it is the Horizant and not the Oxycodone. I even went to the point of splitting the pill in fourths but the problem persist. Through the years Oxycodone appears to be the only drug that has provided consistent relief with minimum side effects. I plan on approaching my doctor about using Oxycodone as my sole source of RLS treatment. However, RLS is at the point that it can start at anytime I am relaxing or resting, day or night.

So I feel I may need to supplement the Oxycodone with something long lasting. So I also plan to ask my doctor about possibly adding OxyContin as well. And that is my question. Is the use of the combination of short acting Oxycodone for break through symptoms and OxyContin for extended relief a reasonable treatment option? If not, can you suggest alternatives? Through the years I have used Mirapex, Requip and Neurontin and had to cease using each due to side effects being as bad if not worse than the condition itself.

Jim D.

Medical Reply

We do combine short acting opioids like oxycodone with long acting ones like OxyContin when necessary. However, most patients who do this tend to use higher doses and risk developing tolerance/dependence upon the opioids (due to the higher daily doses of opioids that are utilized in this plan).

There are several other better options available that you should consider discussing with your doctor.

1) Changing the oxycodone to methadone which tends to work better than oxycodone and "kicks in" about as fast as regular oxycodone but last 8-10 hours which is almost as long as OxyContin (and much cheaper and likely more effective).

2) Trying Lyrica instead of Horizant as it has a much shorter duration of action so should have much less of a tendency to cause next day sedation (which is too uncommon with Horizant).

3) Adding low dose Neupro (1 mg/day and increase to a maximum of 2 mg/day only if necessary) as the risk of augmentation is considerably lower than the short-acting dopamine agonists, Requip and Mirapex (that have already caused augmentation in your case). Even though you have had previous issues with augmentation, it is likely that you may not experience this problem with low dose Neupro.

A Reply from Jim

Sent: Sunday, May 18, 2014 5:20 PM
Subject: Re: Oxycodone and OxyContin

Thanks for the suggestions. I actually see my doctor tomorrow and will talk about adding Neupro. We had talked about it previously but I was hesitant to use it for fear of augmentation since it was an issue with Mirapex and Requip. I am just unsure about methadone because of its association with heroin users. And your treatment page indicates Lyrica may present significant sedation problems which is already an issue with Horizant.

Jim D.

Medical Reply

Your thinking about methadone is incorrect. It is used for heroin addicts who need opioid maintenance therapy because it tends to be safer and more effective for long term use in those patients. When used in markedly lower doses for RLS patients, I find that it has the fewest side effects and is very well tolerated compared to other opioids at therapeutic levels. The only concern about methadone and its use for heroin addicts is the possible stigma by association (which can be easily explained by the low doses used).

Sedation can be a concern with Lyrica but since it has a much shorter duration of action (similar to gabapentin), the sedation effects do not last as long. If taken in the mid to late evening, they should be gone by wake up time in the morning.


Sent: Tuesday, May 20, 2014 1:12 AM
Subject: Candesartan RLS

I was prescribed candesartan for my migraines. I have been on 4mg for 7 days. I have noticed my RLS has got slightly worse and has started appearing first thing in the morning.

Could the medication cause an increase in RLS symptoms and for it to start earlier in the day?

Adam H.

Medical Reply

Candesartan (Atacand) is a blood pressure pill that has not been associated with worsening RLS. None of the currently available blood pressure pills worsen RLS and clonidine may even benefit RLS.


Sent: Monday, May 26, 2014 8:49 PM
Subject: Taking Ropinirole

I was taking 4mg for restless leg. I also get very bad leg cramps at times from the hips through the feet. Sometimes both legs at the same time, they are very hard to get rid of.

My doctor now has me taking 12 mg at bedtime Ropinirole. I have found if I take the full dose I wake up an hour later throwing up, but if I take 8 mg 1-2 hours before I go to bed I don't throw up, is 12 mg too much at what time and what would you suggest that I should take. When I could get quinine I didn't get the cramps.

Vincent F.

Medical Reply

For treating RLS, ropinirole at 12 mg is a massive dose. Although the maximum FDA approved dose is 4 mg, I generally recommend keeping the maximum dose at no more than 1 mg/day. Nausea is a very common side effect for high doses of ropinirole so your complaints are fairly common.

The real issue is that if you need such a high dose of ropinirole to control your RLS (not for the leg cramps as the ropinirole does not help leg cramps in any way), then you may have augmentation (a worsening of RLS from taking high doses of a dopamine agonist like ropinirole), then getting off the drug is the appropriate treatment. However, that is very difficult to accomplish without a physician who is expert enough to manage that process.

Treating leg cramps is very difficult. The only drug that often helps (as you have already found) is quinine but that is currently difficult to get.


Sent: Tuesday, May 27, 2014 9:15 AM
Subject: RLS Patient

I have been suffering with RLS more than 15 years ago and some doctor doesn't know about this illness, I have been taking Tramadol for 13 years before bedtime and it's helped me because I had never felt pain but now I have more than 2 years that Tramadol doesn't help me at all and I am suffering a lot with my legs any time during the day and at bedtime is worse.

I was investigating online about some medications that can help me to control RLS and I would like you to please recommend me how to start taking Requip or Mirapex because I am living horrible days suffering with this problem that doesn't make me have a normal life.

Wendy G.

Medical Reply

Tramadol is a reasonable medication for treating RLS but it can cause augmentation of RLS (which is a worsening of RLS from taking a medication that treats it). When this happens, a change to another medication is often very helpful.

However, Mirapex and Requip have a very high incidence of causing augmentation (and a much more severe one than tramadol) so I currently don't like to use them (even though they are still on the recommended list of drugs of choice for treating RLS).

Horizant or the Neupro patch would be much better choices.


Sent: Wednesday, June 04, 2014 6:40 AM
Subject: New doctor recommends hormone therapy

After over 25 years of dealing with progressive RLS by constantly increasing dosage of pramipexole, gabapentin and Neupro I've found a doctor who recommends short term use of Hydrocodone to transition off of dopamine agonists and anticonvulsants. This is to be followed by hormone therapy combining HGH and testosterone. He believes the result will be substantial or hopefully total relief from RLS symptoms. Any lingering symptoms to be controlled by low dose tramadol.

I'm considering this approach only because I fear the present path will increase side effects of present drugs to the point that the solution is worse than the problem. I am presently experiencing edema, dizziness and the beginning of memory loss.

Richard A.

Medical Reply

Your doctor is partially correct in that the treatment for problems with worsening RLS when on dopamine drugs (like pramipexole and Neupro) is to get off of those drugs. The same does not necessarily apply to gabapentin (or Horizant, Lyrica). However, when you stop your drugs, the RLS may become very severe for several weeks or months and the hydrocodone may not be up to that task. We often suggest using more potent opioids like methadone or oxycodone (which also do not contain Tylenol which does not help RLS).

Tramadol is often helpful for mild to moderate RLS symptoms and may be helpful once your RLS has calmed down (but that could take quite a while and be quite painful following your current plan).

There is absolutely no evidence available that hormone therapy in the form of testosterone and HGH (Human Growth Hormone) should have any positive benefits for your RLS and these drugs are very dangerous.

With proper therapy (which in your case may need the supervision of an RLS expert), you have a very good chance of being able to relieve the vast majority of your RLS symptoms.


Sent: Wednesday, June 04, 2014 1:46 PM
Subject: Restless Leg Syndrome

Hello! I've been on Mirapex for my RLS for 15+ years. My current dosage is at 1 mg in the am, 1 mg in the afternoon and 2 mg before bed. It was my miracle pill for what used to be all-nighters pacing and walking around in circles trying to relieve the RLS. However, because it worked so well, I never paid any attention to the side effects of this drug.

The last 2 years have been a health battle for me. I have seen a dozen doctors trying to figure out why my feet and ankles are swollen all the time, my leg muscles are so sore and weak that I have a very hard time walking, I have shortness of breath that has been diagnosed as COPD, I sweat profusely when I do anything that requires movement, if I sit still for 5 minutes I will fall asleep and have gained a ton of weight!! All my tests say I am perfectly healthy. Finally, this morning, it clicked that maybe I should look up the long term side effects of this medicine. To my amazement, all of these symptoms are side effects of Mirapex!!

I would like to know how long it takes to get this drug out of your system and if the side effects will be gone when it is gone. I also would like to know what other medications there are for severe RLS that would not have these same types of side effects.

Joan C.

Medical Reply

It is very likely that most of your complaints are due to taking Mirapex and you might improve considerably off the drug. However, there are a few other issues. The dose that you are currently taking is extremely high for an RLS patient (it is a high dose even for a Parkinsonís Disease patients) and indicates that you very likely have augmentation (worsening of your RLS from taking the Mirapex).

If you try to stop the Mirapex, your RLS will get markedly worse (you may not be able to sleep at all) for weeks or months. It often takes the use of potent opioids (methadone, oxycodone) to treat this problem. Most doctors (even most specialists) do not know how to manage this situation (or else you would not be on such a high dose of Mirapex currently) so you may have to find an RLS expert who has experience treating RLS augmentation.


Sent: Wednesday, June 04, 2014 6:48 PM
Subject: RLS

I have been off Mirapex for around 7 weeks now. I take 60mg of zomorph each evening which keeps my symptoms at bay. However I have tried to reduce but even going down to 50mg my legs start usually around 1 am. If I can get down to 30 mg I can use this as a long term treatment. I would have thought by now the withdrawals would be complete so any advice much appreciated.

Kim W.

Medical Reply

Your dose of Zomorph at 60 mg is quite high and 30 mg would be a more reasonable long term maintenance dose. It may be helpful to discuss adding Lyrica and seeing if that helps. The Lyrica may be started 2-3 hours before evening symptoms occur at 75 mg and increased by 75 mg every week until you get the desired improvement (or side effects limit any increase). If you have earlier in the day symptoms, then an earlier dose (similar to the above titration scheme) may also be helpful if tolerated.


Sent: Friday, June 06, 2014 10:37 AM
Subject: Augmentation with pramipexole

I am a 53 year old female and have suffered with RLS for 20 years. Other than RLS, I am in good health and don't take any other medications..

I started taking .25 mg of pramipexole 6 years ago and had great success with it. I also used levodopa/carbidopa on nights that the medicine didn't work. In November 2013, I was having substantial problems with augmentation and my sleep medicine doctor suggested that I switch to Horizant while reducing my pramipexole over 2 weeks. I had a terrible time trying to reduce my pramipexole dosage and the Horizant wasn't working
either. I went weeks with little sleep.

Now my doctor has switched me to 3g Neupro patch but I am finding that I still have 2-3 nights a week that I am unable to sleep and have to take more carbidopa. I have been reading about dopamine agonists and that you can build up a tolerance to the entire category of medication. Also, I have also started compulsive eating at night which is new since I am not overweight and have not experienced this
behavior. I have a general feeling of unhealthiness and malaise. I feel terribly bloated with achy joints.

My doctor says the next step is opioids which he is weary of. I would like to go back to a medication that I can count on. What are your thoughts? I have an appointment next week to discuss my options and would like another opinion.

Kathy B.

Medical Reply

It is difficult to give you an opinion for your personal situation without seeing you and performing a thorough consultation (you do not state if you are still on pramipexole .25 mg for example). However I can give you some general accepted information.

We typically do not like to add Sinemet (carbidopa/levodopa) to a dopamine drug like pramipexole or Neupro as it significantly increases the risk of augmentation. Horizant is a very good drug but is not equal to the task of treating augmentation especially when withdrawing the dopamine agonist (hence your failure with using Horizant to get off pramipexole was quite predictable).

Neupro at 3 mg normally would replace pramipexole at .25 mg (if that is what you are currently taking) but likely not the augmentation that occurs with the addition of Sinemet. Adding Sinemet to Neupro should also increase the risk of augmentation. The treatment for your compulsive behavior (which is most likely caused by the Neupro and Sinemet) is to reduce or eliminate the dopamine drugs which of course will dramatically increase your RLS symptoms.

Considering the above (and your other current side effects from Neupro/Sinemet), many experts would try to get you completely off the dopamine drugs. This can be an extremely painful experience without the aid of potent opioids (methadone, oxycodone) which if taken properly typically enable this transition to occur with minimal discomfort. After a couple of months (when the dopamine receptors have reset), a drug like Horizant may be added to try to decrease the opioid dose. It does take some expertise to accomplish this transition so you should see a doctor who has lots of experience treating significant augmentation cases.

You state that this is a private email. Can we post your letter and my response on the website while keeping your personal information hidden?


Sent: Saturday, June 07, 2014 11:07 AM
Subject: Please help RLS-10 years augmentation going nuts

I have had RLS for 12 years. It was originally treated with Neurontin for 2 years but started having blurred vision and dizzy spells and was referred to Neurologist RLS expert. He tried Mirapex and I literally passed out after only taking first pill. He then put me on Sinemet plus Clonazepam. This combination worked for about 8 years until augmentation started. My Neurologist then had me take occasional 1/2 dose of Sinemet earlier or in the a.m. as needed. This Rx plan worked for about 3 more years. Augmentation continued and former Neurologist retired.

When I went back for follow up with new Neurologist in same practice, we tried Requip. It caused horrible insomnia and RLS went wild. I tried Neupro Patch but it didn't seem to work, but this was very soon after came out. So went stayed on Sinemet plus Clonazepam combo. I never took more than .75mg Clonazepam between 6p.m. and bedtime. In 2011, my Neurologist added Horizant to my Sinemet plus Clonazepam regiment. This worked for about 14 months at which time I titrated off the Sinemet because RLS symptoms seemed to be getting worse.

I found another Neurologist RLS specialist at Vanderbilt. He suggested adding Lyrica and opiates. I shared my paralytic fears and concerns of using narcotics. All I could think of was becoming addicted and on some kind of pain pump. Also, at this time I had experienced no pain with RLS (or what I considered pain). I only had joint pain/stiffness-(mild) and occasional upper thigh achiness and heaviness. So he prescribed Lyrica and increased my bedtime Clonazepam to 1mg and said to continue 5p.m. Horizant 600mg. I filled Lyrica prescription but never tried the Lyrica. I was also fearful of Lyrica because of all the warnings about depression, suicidal thoughts, etcÖconsidering I had been on/off Sertraline for 8+ years.

At my 3 month follow up appointment, I had become depressed and shared concerns about Horizant or increased dose of Clonazepam possibly being the culprit. I had always had some concerns about the Horizant possibly making me sick. Needless to say, my Neurologist was very cautious and immediately stopped Horizant and suggested I seek psychiatric evaluation, all the while reiterating he was not a psychiatric specialist. He also prescribed Trazodone and recommended Wellbutrin but did not prescribe it.

First let me strongly suggest for the record, I do not recommend abruptly stopping Horizant for anyone. I immediately experienced what I would call my first experience of withdrawal symptoms. I was a nightmare down spiral of immediate insomnia (never had before only RLS breakthroughs but not pure insomnia, dry mouth and metallic like taste I assumed from Trazodone (which I discontinued after 2 nights thinking it was causing insomnia), burning acid in stomach, IBS and spastic colon. This went on from Thursday until Monday when I was able to get to my primary care physician on Monday morning. She added Sertraline (Zoloft) 25mg which I had taken over the past 10 years on and off for depression even though studies indicated it could cause or exacerbates RLS.

After 2 more days of metallic taste I now developed full blown Burning Mouth Syndrome (BMS) which felt like hot coals on my tongue. I have had this ever since (8 months now). Primary Care Physician (PCP) had never heard of Burning Mouth Syndrome. So, off to the dentist to find out what is going on. Teeth are in great shape no indications of thrush, etc... My dentist prescribes mouth rinse with Lidocaine, Antacid (Mylanta) and Benadryl to rinse and spit. No cure just numbs pain. I am seeing a Psychiatrist, who is very understanding of my high sensitivities to medications. He has and is still trying various natural remedies as most anti-depressants are not RLS friendly. I sure do miss my Zoloft. Anyhow, I am going to another Neurologist RLS expert at another renowned medical teaching facility. I believe my options are down to Lyrica, trying Neupro Patch again and last resort opiates. What would you suggest? I still need something for depression/anxiety but Wellbutrin 150 SR caused insomnia but definitely helped calm RLS daytime and evening and Trazodone also caused Insomnia. How do I get over fear of opiates?

Pam M.

Medical Reply

Your case is obviously quite complicated and made more difficult by your over-reaction to many drugs. Those type of patients tend to be my most difficult ones. Your problems upon stopping Horizant are very unusual as we typically do not taper people off the drug when they are taking only 600 mg (we do taper off when on higher doses) and I have never seen or heard about your type of reaction (and I use a lot of Horizant).

As you are aware, most all of the antidepressants cause worsening RLS as does Benadryl so if possible, you should try to stay away from those drugs. However, if the depression is very bad, you might need to go back on Zoloft and treat around that drug.

Neupro might be a problem given your reaction to Requip and Mirapex but it might be worth a try if all else fails.

Before trying opioids, you should have your ferritin checked and see if iron therapy may be an option (we like to see the iron well above the 75 range before ruling out that option).

Opioids are the last choice but they can help dramatically for many severe RLS patients. They clearly have problems in some patients who cannot tolerate them but you will never know unless you try them. Taken in reasonable doses, tolerance/dependence/addiction should rarely occur.


Sent: Monday, June 16, 2014 7:26 AM
Subject: Augmentation

I have read that Sinemet has an 80% chance of causing augmentation. Do we have percentages on Requip and Mirapex?

What is the maximum dose you prescribe these two meds in to help prevent augmentation?

James D.

Medical Reply

The incidence of augmentation is not fully known with Requip and Mirapex (the prospective studies are usually too short since they rarely last over a year or two). However, we do have a few retrospective studies that indicate that augmentation may occur at about 5-7% per year (one study had 70% of their Mirapex patients stopping the drug due to augmentation by 10 years).

I now recommend a maximum daily dose of .25 mg for Mirapex and 1 mg for Requip. One can still get augmentation at those doses (or even the minimum dose) but the augmentation is much easier to deal with at those much less than FDA approved doses.

A Reply from James

Sent: Monday, June 16, 2014 11:37 PM
Subject: Re: Augmentation

Do the opioids stop the leg twitches/jerks or just stop the discomfort? Are angiotensin-II receptor antagonist or an ARB medications RLS friendly? (Candesartan, Valsartan )?

James D.

Medical Reply

Opioids do stop the PLM/leg jerks but only about 50-60% as well as Mirapex and Requip (in general).

Blood pressure pills do not affect RLS.


Sent: Wednesday, June 18, 2014 12:12 PM
Subject: Is my RLS at its worst?

I'm in Lesotho, Southern Africa and haven't found a helpful resource like yours in my area. I was diagnosed with RLS earlier this year by a South African-based neurologist. Initially only my feet were giving me a problem when I am restless. Off late typing on a phone or making a call results in pain in my arms. I'm currently on Oxpola 0.25 mg (pramipexole) and I have trouble sleeping when I've taken them.

Sechaba

Medical Reply

The concern about your case is that the Oxpola (pramipexole or brand name Mirapex here in the USA) can cause augmentation (a worsening of RLS from taking the medication after an initial period of relief) and it is quite possible that you are experiencing this problem. With augmentation, the RLS gets more intense, occurs more quickly when at rest, occurs earlier in the day and spreads to other body parts (usually the arms first).

There are a few suggested treatments for augmentation but most experts agree that getting off the dopamine agonist (pramipexole) is the most helpful plan. However, it often takes potent opioids (oxycodone, methadone) to accomplish that goal without causing extreme withdrawal RLS symptoms (you might not even be able to sleep at all) for several weeks or months. It takes a very experienced RLS doctor to treat this problem (you can read the many letters on our site devoted to this topic).

Your doctor will most likely want to increase your pramipexole dose which will temporarily help your symptoms. However, with time (a few months of years at best), the augmentation process will substantially worsen (it is like adding fuel to the fire) and you will most likely end up more miserable.


Sent: Thursday, June 19, 2014 4:55 PM
Subject: Augmentation or Tolerance?

I (aged 41) was diagnosed with WED in 2010 and was treated with increasing doses of dopamine agonists. Initially I got 0,5mg Ropinirole, which was increased to 2mg within 18 months. My doctor switched to Mirapex which again went from 0,35mg to 1mg per day in another 2 years. Then I had to stop Mirapex about 8 months ago. (I also changed my neurologist for the first time.) Since then my WED symptoms are severe, 24/7 and pretty much out of control. Ferritin was measured at 250ng/ml and considered sufficiently high. WED does run in my family, but my symptoms are by far the worst.

I changed medication several times, and they reduced the symptoms only for a very short time, twice literally just one day. This is the summary:

1. I started in a clinic and was put on Gabapentin (900mg/day) plus 200mg L-dopa, which didn't help a lot against the strong WED symptoms. So my doctor added Lyrica (50mg/day). I slept extremely well (I thought) in the first night after adding the Lyrica - but just this one night. I was released from the clinic (which closed for Christmas at the time - which was really, really bad timing), and couldn't contact the neurologist that treated me there anymore. After two mostly sleepless weeks a local neurologist recommended to increase the dosages. 4 weeks later, after several steps, I was at 1600mg Gabapentin and 300mg Lyrica plus L-Dopa per day, which allowed me to sleep 6-7 hours occasionally. But most nights were still bad. (Unfortunately Gabapentin enacarbil is not available in Germany.)

2. I was referred to a WED specialist, who has treated me since. He said the amount of Gabapentin/Lyrica was absurdly high, and replaced the Lyrica/Gabapentin combination with Tilidin (an opioid not available in the US). I was able to sleep with 200mg/day at first, but after a few weeks I had to go to 300mg/day. This worked for a few more weeks, but then I had to add L-Dopa (with 300mg Tilidin the sensible limit according to my doctor). I was extremely tired during this period though, even though I seemed to sleep 6-7 hours every night.

3. A sleep laboratory trip resulted in the information that my sleep is fragmented by rather frequent PLMS (but I do not have a relevant sleep apnea). So Tilidin and L-Dopa allow me to go to sleep, but do not address the PLMS sufficiently. Therefore my doctor added Clonazepam to the mix. Again, the first night with 0,5mg Clonazepam was wonderful Ė I felt really refreshed in the morning, something that I hadnít felt for years. But again this lasted just one night. The WED symptoms came back during the next night, and after three weeks we decided to stop Clonazepam because my WED symptoms were worse than before. Reducing the Clonazepam over the last 4 weeks (0,5mg/0,25mg/0mg) didnít really help though - that's where I am right now. WED symptoms can be controlled by a sufficiently large dose of L-Dopa, but I do have trouble finding sleep ever since starting the tapering.

Could all this simply be augmentation from the L-Dopa (which Iíve been taking more or less constantly at an average dose of 200mg/day for 8 months)? And why do these drugs, that clearly seem to work to some degree at first, lose efficiency so quickly? There seems to be no paradoxical effect, since tapering the various medications didnít reduce the symptoms.

Do you have any recommendations?

Since I'm getting desperate, I'm digging into the non-pharmaceutical side of WED treatment. Something that may or may not be relevant: I started Omeprazole shortly before my wife noticed me having PLMS for the first time (before the first WED symptoms), which may hamper iron and vitamin B12 absorption. I also don't remember any dreams except the occasional nightmare perhaps once a year, which may be an indication of a vitamin B6 deficiency. I've read that Vitamin B6 is also necessary for dopamine synthesis, so I started taking 250mg/day vitamin B6 about a week ago - so far with no results, but one week is probably too short to judge on that.

Thomas L.

Medical Reply

The WED/RLS specialist that you consulted (I would be interested in his name if you feel comfortable letting me know) was correct in that your dose of gabapentin was very high especially as it acts on the same receptors as Lyrica (meaning that you were actually getting more than a double dose. The only saving grace here is that most people donít absorb higher doses of gabapentin well (the transporters in the bowel get saturated at low doses and adding more does not get more into the blood) so much of your gabapentin might have just passed through your intestines and gotten expelled in the toilet. Since Horizant is not available, my suggestion is to discuss going back on Lyrica (it gets absorbed very well) and stop the gabapentin.

Tolerance does occur with the dopamine agonists and L-dopa but likely as the first stage of augmentation. Your case sounds like augmentation which occurs in over 60-80% of RLS patients taking L-dopa (especially at 200 mg) which is why we RLS experts do not use this drug on a daily basis here in the USA (unlike some of the European RLS doctors). Augmentation is a difficult problem to treat and there is quite a bit of controversy on how to treat it. However, most WED/RLS specialists agree that the dopamine drug (L-dopa) should be stopped.

Stopping the L-dopa will result in markedly increased RLS symptoms (much worse than you are experiencing now) for a few weeks to months. Potent opioids (methadone, oxycodone) are typically needed to treat this problem. Tilidin is a low to medium potency opioid so it may not be up to that task (especially since it is not helping that much even with the other medications on board. I do not think that methadone is even available in Germany but you do have oxycodone and there is a new research article using Targin (long-acting oxycodoneĖnaloxone combination) which worked very well for treating failure of drug therapy for WED/RLS. That is my suggestion to discuss with your WED/RLS specialist.


Sent: Friday, June 20, 2014 9:08 AM
Subject: Dopamine Agonist Medication

Do the three Dopamine Agonist medications increase anxiety? Do they cause cognitive behavior problems?

I have read on your website that SSRI and SNRI are not RLS friendly but would you favor one family of meds over the other such as are the SNRI drugs slightly more friendly than SSRI?

James D.

Medical Reply


The dopamine agonists generally do not generally cause anxiety but that can happen in a minority of cases.

The DA drugs do not cause cognitive problems unless they cause sedation (which does happen in a few percent of patients). However, they do cause ICD (Impulse Control Disorders) like compulsive gambling.

As far as the difference between SSRIs and SNRIs; not much, this is much more of an individual variation.

A Reply from James

Sent: Wednesday, June 25, 2014 6:41 AM
Subject: Leg jerks

I have this really strange thing happening to me and I will try to explain It the best I can.

I have started to meditate as I was told stress makes RLS/PLMD worse. I was noticing that I was getting bad leg jolts during it. I thought it was the meditation but I am starting to think its just when I start to slightly fall asleep / doze off.

If I lie on my back and stay awake and do not move my legs ache slightly but when I start to fall asleep and doze off my legs start jerking. Does this make any sense? So its like the interim between consciousness and sleep causes my legs to jerk quite badly?

James D.

Medical Reply

Without an EMG recording (such as we do on a sleep study), it is hard to say whether your problem is due to PLM or hypnic jerks (which occur in stage 1 sleep which is the transition to deep sleep).


Sent: Monday, June 23, 2014 11:54 AM
Subject: Can not take Requip while on a plane flight/ help?

I have had RLS for about a decade. Since, I have taken some transatlantic flights, and have learned that I CAN NOT TAKE THE MED WHILE ON A FIGHT. My neurologist does not understand why. The medication does something to my oxygen level. Iíve taken the med twice while on an overseas flight. The first time I passed out and needed oxygen for the rest of the flight. The second time I felt incredible ill (the flight attendants would not give me oxygen unless I stolid up and passed out which I refused to do).

I have tried herbals, but they do not help with the restless legs. Can you offer any ideas or help? I love to travel, but being on an transatlantic flight (which seem to be overnight flights flying from the states) is torture as I am not able to sleep due to RLS.

Tortured while flying
Pam S.

Medical Reply

Although they gave you oxygen (there is not much else that they can do for you on a transatlantic flight), it is very unlikely that they Requip caused low oxygen levels (I happen to be both an RLS/Sleep specialist and a Pulmonary/Lung specialist). The most likely explanation is that the Requip may have caused hypotension (low blood pressure) which resulted in your passing out and feeling ill. Taking more fluids might be helpful. If hypotension is not the cause, then your problems with flying while on the drug are very difficult to explain.

However, there is a very easy solution. Just ask your doctor for an opioid and that should get you through the trip nicely. Vicodin/Norco, oxycodone, Tylenol with codeine or possibly even tramadol (although this drug is somewhat less potent many RLS patients do very well with it). The opioid may need to be dosed every 4-6 hours as needed.

A Reply from Pam S.

Sent: Tuesday, September 02, 2014 6:06 AM
Subject: I think that you are correct!

This is Pam who has a problem taking Requip on planes. I think that you are correct that the meds must lower my blood pressure (while flying) and this is why I pass out or feel ill. I have been told that while flying, the atmospheric pressure is almost equal to that at 8 thousand feet. I am usually fine at 8 thousand feet, but obviously, if I were to take Requip, I would not be.

The low blood pressure affects the ability of oxygen to reach my body tissues. This is why I yawn uncontrollably if I take the meds on a flight?

I am still tortured by this. I have taken Vicodin, which helps. Itís all about timing though. I need to take it before I get on the flight to catch it working before restless legs set in. It helps to sedate me enough so that I can sleep.

Would hate to have to stop flying, but I am close due to this problem.

Pam S.

Medical Reply

The low blood pressure does not affect the ability to oxygenate your tissues. You probably yawn because you are tired and bored (although we really do not fully understand the yawn reflex).

If you take the Vicodin as the flight starts, you should be fine for 4-6 hours so no reason not to fly.


Sent: Sunday, June 29, 2014 1:29 AM
Subject: RLS and pregnancy

Hello, I am responding to a very old discussion thread that you have online. Been referencing it for a couple of years. Now I need help! RLS & neuropathy from the waist and down. Recently married & husband wants to have baby. I am worried.

I'm 30 year old female. Born with tethered spinal cord syndrome. Didn't discover it until a couple of low back injuries around age 24. Severe nerve damage accrued and exacerbated the underlying issue.
About 2 years ago, did a sleep study for severe drowsiness and dozing off. I've had RLS since child/teen. But docs thought I had narcolepsy. Sleep study showed severe RLS. Kick count above 40 (I slept well that night, in a comfy bed alone, so I kick worse/ restlessly more at home). Been on lowest dosage Requip .25 since, one nightly. Also low dose Norco 5/325 only a half tablet 3-4 nights per week. Can't tolerate many meds. But I can't tolerate the agonizing pain anymore either.

I did have the low back surgery about 6yrs ago, for the tethered spinal cord. I will be in pain and not sleep well the rest of my life. I'll have to deal with that. But stalling pregnancy is getting stressful on my  marriage. Even though he's my high school sweetheart and knows what I've been through. I just can't get pregnant if I stop RLS medication. Or I'll literally never sleep well enough to get through a day.

My concerns: what can I do about severe RLS, due to severe permanent neuropathy..without affecting a pregnancy? Only advice I can get from my primary care physician and gyn are to wean off meds before trying for a baby. (Gabapentin helped in past for nerve pain but I'm off that. Also take Zoloft for OCD and depression due to chronic pain.) Since Requip isn't researched for pregnancy and RLS. But I've dozed at the wheel and while working before taking Requip. I'll have an accident for sure. Please help me!

Jenna L.

Medical Reply

We have treated RLS during pregnancy for many years quite successfully. However, you should be sure that you do have RLS as the PLM (leg kicks) that were found on your sleep study does not diagnose RLS but just adds some support to the clinical diagnosis (for example, PLM are very common in many other conditions and with drugs like Zoloft).

There are new guidelines about to be published for treating RLS during pregnancy and lactation. Although we would like pregnant patients to take no drugs, when necessary clonazepam (to help sleep and anxiety) and Sinemet may be quite helpful. For more severe cases, low doses of opioids (oxycodone, methadone) might be considered.


Sent: Saturday, June 28, 2014 1:27 PM
Subject: Recent RLS Sufferer

I have yet to be diagnosed with RLS but I am certain this is what it is. I have an appointment with a rheumatologist on July 17th, to get an official diagnosis, even though I'm certain I have RLS. I am from Ireland and I am a 24 year old male. I have the familiar crawling and burning sensations, and skin throbbing.

It first started for me in early December in my lower right leg. Symptoms where so calm to the point I thought it was a result of a minor ankle injury I picked up a week before. I slept the very best with only the smallest sensations and these only occurred at night. However from the start of May until now things have deteriorated very badly. Symptoms now affect both my legs, and these occur all day every day. Sometime at night my arms get affected to as well as other parts of my body, but those are minor at the moment.

My doctor prescribed me amitriptyline, I took just one tablet of it at the smallest dose. I proceeded to dump them the next day as I was so tired and dazed during the day the next day. (I now regret this, as I could dearly do with them). I slept fine that night. Basically that is the only medication I have used to date. I am due to start a full time University teaching degree in September, and to be honest if things continue as they are with zero sleep altogether, I wont be able to pursue the course. My everyday activities now in life are so difficult, as my symptoms are 24/7.

What advice do you have for me, as a meds novice, I fear augmentation as to be honest things are already torturous despite the fact I haven't even used any medication yet. So if things get worse than this, I'm in serious trouble? What medication is the best to start on? Will any of the medication help alleviate day time symptoms as to allow me to pursue a normal enough day time life? What would help with the sleep?

Cahir M.

Medical Reply

Assuming that you do have RLS, you need to see a doctor who is more familiar with the disease as you doctor gave you a drug that worsens RLS (see the list of drugs that worsen RLS on our RLS/PLMD Treatment Page and on our RLS Medical Alert Card).

If augmentation is a concern (and unfortunately that is all too common with the short-acting dopamine drugs, pramipexole and ropinirole) then your choices include the alpha-2 delta drugs (gabapentin and Lyrica). These drugs also help most RLS with their insomnia problems. If those drugs fail to help your RLS, then opioids and tramadol are generally the next choice.

A Reply from Cahir

Sent: Friday, July 04, 2014 4:26 AM
Subject: RE: Recent RLS Sufferer

My GP has just prescribed me with clonazepam tablets, 2 mg. My RLS is a constant 24/7, effects my legs all day every day, arms particularly in the evening and nights, my back too.

I would say my RLS is pretty severe. I'm on no medication, will these help me? They say to take it before bed. I just want to avoid anything that will aggravate my RLS.

Cahir

Medical Reply

Although clonazepam is often listed as an RLS drug in some of the very older textbooks, it is not a great choice to treat the disease. It does not relieve RLS symptoms but only acts as a sleeping pill (if you are asleep, you donít have RLS, back pain, headaches, etc.). Since it has a half-life of 40 hours, when you take the pill the second (and subsequent days), you have more than Ĺ the drug still present in your body. There are much shorter acting sleeping pills that can accomplish that goal (if you only want to focus on the insomnia caused by RLS and not on the actual symptoms). Furthermore, 2 mg of clonazepam is a very high dose and most doctors would start at .5 mg (if they would even use the drug in the first place).

Again, I have described the appropriate choices of therapy in previous emails and you may want to get a referral to a physician who is more knowledgeable in treating RLS.

A Reply from Cahir

Sent: Tuesday, July 08, 2014 4:07 AM
Subject: RE: Recent RLS Sufferer

I just got my Ferritin levels results back from my GP. they told me they were 'normal'. However I asked for my exact score as I was told that RLS suffers need a higher level. My score is 28. Do you suggest I ask for Iron supplements to try and boost my levels to see if it can make any difference or what?

I still haven't taken any medication yet until I have my meeting with the rheumatologist on July 17th. Also had my magnesium levels checked, will get my result for that tomorrow, what should be a normal magnesium reading for an RLS sufferer?

Cahir

Medical Reply

We generally aim for ferritin levels of 50-75 for RLS patients. Most iron supplements are over the counter and we suggest that patients take 65 mg of elemental iron (ferrous sulfate) up to 3 times per day (if tolerated) with orange juice and on an empty stomach. Iron and ferritin levels should be closely monitored by your doctor.

Magnesium is not relevant to RLS.


















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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 107.
http://www.rlshelp.org/rlscomp107.htm
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