Patient letters on RLS symptoms and remedies- Page 109

Sent: Sunday, October 19, 2014 4:22 PM
Subject: RLS and Venous Stasis

I would like to ask your valued opinion on the connection if any between RLS and Venous Stasis. So called evidence of treatment for this condition leads to relief of RLS symptoms in 98 percent of cases is being discussed on a UK forum I am a member of. To my knowledge RLS is Neurological and vein health does not play a part. Would be interested in your opinion.

Kim W.

Medical Reply

There are a few studies that were not very scientifically performed that claim benefit in RLS symptoms when treating varicose veins/venous stasis.

However, none of these studies have been reproduced by other groups/doctors and the consensus of RLS experts is that treating varicose veins has absolutely no benefit for RLS.

A Reply from Kim

Sent: Tuesday, November 04, 2014 10:23 PM
Subject: Neupro

After getting augmentation on Mirapex I had a 6 month break off dopamine agonist. I started 1mg Neupro patch 10 weeks ago which was bliss for 9 weeks . symptoms have returned severely and spread into both arms. Would you recommend I try 2 mg patch or give up on dopamine meds as it seems augmentation is starting again? I have a supply of morphine I could use to get off patch.

Kim W.

Medical Reply

It is somewhat difficult to predict what will happen with an increase of the Neupro to 2 mg but my gut feeling is that sooner or later (within a few to several months) that the Neupro will cause further augmentation.

A Reply from Kim

Sent: Saturday, January 24, 2015 12:44 PM
Subject: PLM with head involvement

Recently during episodes of PLMWA I have noticed alongside the usual leg jerking I have started an involuntary nod of the head! I have never heard this mentioned anywhere and it is causing me concern. This only happens during a RLS/PLMWA flare up. Have you ever come across this happening before?

Kim W.

Medical Reply

I have not heard of head jerking with PLM but since all the limbs can contract, it is possible that the neck muscles could also contract. The other issue is that the leg/arm jerks may be violent enough to cause the head to move without any involvement of the neck muscles.

Sent: Sunday, October 19, 2014 7:48 PM
Subject: Nortriptyline and RLS?

I'm not sure is Nortriptyline is considered a RLS friendly anti-depressants or not. There seems to be contradicting information. I trialed Wellbutrin IR (only 37.5 mg) and was up most of the night with insomnia. Even with the addition of Trazodone I still had extreme insomnia.

Pam M.

Medical Reply

Nortriptyline is possibly RLS friendly as the other drug in that class, desipramine is also somewhat RLS friendly. The only way to know for sure is to try it.

A Reply from Pam

Sent: Wednesday, November 12, 2014 10:42 AM
Subject: Increased Insomnia on Methadone

My sleep doctor (RLS specialist) prescribed a low dose re-trial of Methadone. The prescribed amount is 2 mg of liquid form at bedtime. I previously trialed 5 mg tablets then lowered next night to 2.5 mg this past summer due to severe vertigo and some motion sickness and only lasted 4 days before giving up. Due to those side effects, I chose to only start half (1.25 mg/ml) of the methadone last night. I’m already experiencing insomnia, anxiety and depression.

After taking the methadone last night it made me quite restful and no RLS (but for some reason RLS has been better at night with .5 mg clonazepam and newly added trial of 25 mg of Lamictal for depression) I was waking up every 2 hours. Is it common for methadone to cause insomnia? If so, does this get better with time? I am still struggling with extreme anxiety and fear about the Methadone. Fortunately, it did not make my nausea any worse today. Still dealing with that daily even though I am taking 4 mg of Zofran twice a day. That’s another story all in itself.

I was wondering if there were any studies that Lamictal improved RLS? I found an online study showing effectiveness for depression and restless legs syndrome. I still wish I could push through the Wellbutrin insomnia but I couldn’t reducing current 4 hours of sleep any further.

Pam M.

Medical Reply

There is one other small pilot study that shows some benefit for Lamictal for treating RLS. I personally have not seen that much benefit in my RLS patient who take the drug (usually for other reasons) but that is based solely on anecdotal evidence.

Methadone tends to cause more problems with sedation (when side effects occur) but I have seen several cases of insomnia. It does typically improve in about a month or so. However, you could also try oxycodone (if you have not already tried it) and see if that works as well and does not cause as many side effects.

A Reply from Pam

Sent: Thursday, November 13, 2014 6:02 PM
Subject: Re: Increased Insomnia on Methadone

Is there any reason why hydrocodone with ibuprofen instead of Tylenol couldn't be used for RLS? I've had some relief for 4-5 hours with 5 mg of hydrocodone but it makes me a little sleepy so might not be able to use it in the daytime. I actually had benefit from methadone but tonight the lower left abdomen/spasms got worse and moved to complete abdomen and back pain. I haven't had a chance to be constipated after only 2 days and I have had bowel movements both days.

Is hydrocodone more addictive with higher rate for tolerance than methadone? The reason I ask is it seems that physicians are hesitant on hydrocodone.

Medical Reply

The issue is that physicians are hesitant to prescribe any opioids whether it is methadone, oxycodone or the less potent hydrocodone. To make matters worse, physicians were more comfortable prescribing hydrocodone products as they were schedule III but a month ago they were moved into the more potent opioid category II (with oxycodone and methadone). All these opioids are equally addictive when given at equally potent doses.

The issue about not taking hydrocodone with either acetaminophen or ibuprofen is that the added drugs do not help RLS so can only increase the risk of side effects without adding any benefit for that risk. Hydrocodone can only be obtained in its “pure” form by having it formulated in a compounding pharmacy (I have a few patients who do that) but that can be expensive and is often not covered by insurance.

Sent: Wednesday, October 22, 2014 1:22 AM
Subject: Acupuncture for RLS?

Some say acupuncture works to relieve RLS. Any idea how many sessions it would take?

Insurance does not cover acupuncture, and I’m not too keen on going through experiments that may or may not work.

Ramunas
Prescott AZ

Medical Reply

Acupuncture does not help RLS.

Sent: Friday, October 24, 2014 9:57 PM
Subject: Spinal Cord Stimulation Therapy by Boston Scientific

My Primary Care Physician recently sent all her patients on narcotic medications to a Pain Management Physician to verify that the medications she was prescribing were appropriate. Granted, the Pain Management Physician did not know very much about Restless Leg Syndrome, but he agreed that the OxyContin was being used properly. However, his consultation about the use of OxyContin is not my question to you.

The Pain Management Physician felt that I might be a candidate for Spinal Cord Stimulation Therapy by Boston Scientific. I would do just about anything to rid myself of Restless Leg Syndrome which has greatly impacted my world for more than 30 years. However, any procedure that involves intervening in nerve impulses to my brain seems worthy of much research and advice.

What is your opinion about this procedure? I don't want to be tied down with strong opiates the rest of my life but I do not want to take a risk that might have unforeseen consequences.

Regena S.

Medical Reply

Although spinal cord stimulation therapy is appropriate for spine pain (such as caused by pressure on a nerve root from a bulging disc), it has no role in the treatment of RLS. Pain management doctors do understand how to treat pain (and a large majority of their patients have spine related pain) so the stimulation approach is one of their go to methods for dealing with severe pain (but they don't know much about RLS discomfort or its treatment).

Since the stimulation therapy does not apply to RLS so I would not recommend pursing this treatment.

Sent: Thursday, October 30, 2014 7:09 PM
Subject: What drug therapy after augmentation?

I successfully treated my RLS for 10 years with Mirapex until I developed augmentation 2 years ago. I got off the Mirapex with the help of Tramadol. I then unsuccessfully tried Horizant, so I went back on Tramadol. For the last 2 years I've successfully treated my RLS with Tramadol, but now I'm experiencing the same augmentation symptoms with Tramadol that I did with Mirapex. I suspect that if I try to go on another dopamine agonist med that I'll be looking at more augmentation.

What do I do now? I'm thinking I'll have to stop the Tramadol, but it seems I'm running out of therapy options unless I go on opioid type meds, which I really don't want to do. Are there any other options?

Mike B.

Medical Reply

Typically, augmentation only occurs with dopamine drugs but there are case reports of this occurring with tramadol also (and I have seen a few cases of this myself).

At this point since Horizant has not helped you have 2 options to consider and discuss with your doctor.

1) Change the tramadol to an opioid such as oxycodone or methadone (very low dose) as there are no issues with augmentation and these opioids treat RLS even better than tramadol. Even though you are not keen on opioids, at low doses they are most often very safe and effective.

2) Change to a long acting dopamine agonist (augmentation seems to be much less of an issue so far) such as the Neupro patch.

A Reply from Mike

As a follow up to your response I have a question on your 2nd option. If I'm trying to change to a longer acting dopamine agonist (which augmentation is of a lesser occurrence) such as the Neupro Patch, would this also hold true for the longer lasting extended release Mirapex dopamine agonist and would it be also not as likely to have augmentation? If so, I would prefer taking the extended release Mirapex.  

Mike B.

Medical Reply

There are 2 issues with starting out by taking the Mirapex ER pill (or Requip XL) as a long-acting dopamine agonist although they would likely be useful for other situations. 

1. The initial dose of each of the above is somewhat high (.375 mg for Mirapex ER and 2 mg for Requip XL) which is much higher than the comparable starting dose of Neupro at 1 mg (this is comparing equivalent potency of the different drug doses even though the mg strengths are different). 

2. These drugs are only FDA approved for Parkinson's disease so will likely be very expensive and not covered by your insurance (and no generic available as they are fairly new).

A Reply from Mike

Sent: Thursday, December 04, 2014 6:32 PM
Subject: Re: What drug therapy after augmentation?

Since your reply to my last email, my neurologist has put me on (2) Horizant and Norco 7.5-325 for breakthrough symptoms as needed. This is helping me get through my augmentation withdrawal from Tramadol. I'm meeting with him this Monday to discuss my therapy moving forward.

I haven't had much success with Horizant as a single therapy, having to either add the Tramadol or hydrocodone, most likely because I've always been taking it while augmenting. I was wondering, in your opinion, once you've gone through augmentation, especially if you've had it from more than one drug (i.e., Mirapex and Tramadol) and are back to pre-medicated baseline symptoms, is it possible that the alpha 2 delta drugs, and more specifically Horizant, are no longer as effective, especially as the only therapy used?

I really don't want to try the Neupro Patch, even though it's less likely to cause augmentation, because I don't want to be on another dopamine drug. I believe my best therapy would be methadone as my single therapy. Even though I have some concern with the methadone, based on your comments and the research I've done, I believe that it would be safe and effective.

Mike B.

Medical Reply

After being off Mirapex for over 2 weeks (could be up to 4 weeks for some), the augmentation process should have reversed itself back to baseline. It is less clear what happens after stopping tramadol but it should be somewhat similar (typically, most patients have a reasonably mild augmentation increase in RLS symptoms with tramadol and can stop the medication fairly easily). However, if you still continue to use tramadol, you might be perpetuating the augmentation process.

In general, opioids like methadone and oxycodone are the most effective treatment for augmentation and severe RLS symptoms and if used correctly, they should be quite safe. They are certainly one of the options that patients in your situation should discuss with their doctors. Taking Horizant together with the opioids might enable you to use lower doses of the opioids (it that is an issue).

A Reply from Mike

Sent: Sunday, December 14, 2014 8:20 PM
Subject: Re: What drug therapy after augmentation?

I've met with my neurologist and have discussed all therapy options. He recommended that I begin a new therapy of 5 mg methadone in the evening. I will begin the methadone tomorrow evening; however, I've read a lot about titration with methadone, beginning at 2.5 mg for 5-7 days before beginning the 5 mg. My doctor didn't mention anything about this.

Since 5 mg is the smallest dose, is it really necessary to titrate, beginning with 2.5 mg?

Mike B.

Medical Reply

Although we do often suggest starting at 2.5 mg of methadone to determine how a patient responds to opioids, that may be too low a starting dose for some (it is probably very reasonable for patients over 65 years old). However, you could always try the 1/2 tablet and see if it is sufficient although most patients do need a whole tablet. There is little downside to taking the 1/2 tablet first and adding another 1/2 tablet if needed to determine the effective dose.

Sent: Saturday, November 01, 2014 10:18 PM
Subject: RLS worse with frozen prepared meals?

I had severe RLS during my late 40's. At that time I was eating Weight watchers dinner to lose weight (I was ten pounds over what I wanted to be). The RLS got very severe. I stopped eating the frozen dinners and the RLS mostly disappeared. It reoccurred ten years later but not as badly. I started taking a iron pill every three days or so, and that seemed to keep it mostly under control.

A few years ago I had laser surgery for varicose veins. The RLS stopped. I haven't had to take an iron pill since then. I do have to watch what I eat. RLS for me seems to be triggered by packaged foods and some restaurant foods. I keep a log of what I eat. Now, in my late 60's I have an episode about once every two months.

Gwen D.

Medical Reply

Some RLS patients notice that certain foods cause an increase in RLS but I have not heard much about packaged/frozen food.

There are some articles about varicose vein surgery helping RLS but this has not been substantiated in practice.

Sent: Monday, November 03, 2014 10:44 AM
Subject: Parkinson's disease medication for RLS?

Long history of RLS. Started at age 8. Over the years it has gotten totally out of control . I am on Mirapex .25 mg at bedtime with the back up of oxymorphone 5 mg. With the side effect of narcotics I try to stay away from them. Before taking levodopa years ago and then on to Dopamine agonists I would fight the RLS all night until about 2 am. It would go away and I could at least get a normal sleep for a few hours. Since starting the various medication, my RLS just comes at different time starting as early as 6 pm. Having witnessed the changes my brother went through it try to get off of Mirapex 2 mg, I would rather suffer with a lower dose. The addiction was horrific.

In the October/November issue of Neurology Now (an official publication of the American Academy of Neurology) there was a great article on Parkinson’s disease. Beside Levodopa and the dopamine agonist, the monoamine oxidase-B inhibitors was mentioned.

If the dopamine agonists stimulate receptors in the brain and mimic the action of dopamine even when none is present and the MAO-B inhibitors block the enzyme that breaks down dopamine and keep the brain dopamine levels elevated would taking MAO-B inhibitors be more affective that the dopamine agonists ?I realize the article was about Parkinson’s but is there any variation or combination that would work like the MAO-B for RLS ?

Patty M.

Medical Reply

We do not know how or why the dopamine drugs like levodopa and Mirapex help RLS but we do know that the MAO-B inhibitors do not improve RLS symptoms.

You are experiencing augmentation from Mirapex (a worsening of RLS symptoms from taking Mirapex) and the treatment is to get off the Mirapex. This is usually accomplished by replacing it with an opioid like oxymorphone. You might need more oxymorphone for the first few weeks but then you would likely need the same or less. You could also supplement with an alpha-2-delta drug like gabapentin, Horizant or Lyrica.

Sent: Monday, November 03, 2014 11:24 PM
Subject: Dose of pramipexole to avoid augmentation?

What is the maximum dose of pramipexole you would prescribe to try and avoid augmentation?

Marc J.

Medical Reply

I currently recommend that Mirapex be kept to a maximum of .25 mg per day. However, augmentation may occur even at the lowest dose of Mirapex (.125 mg) but the risks of developing augmentation is related to the dose so it is less common at those lower doses. Furthermore, when augmentation occurs at doses of Mirapex .25 mg or less, it tends to be less severe and easier to deal with compared to higher doses.

Sent: Tuesday, November 04, 2014 7:46 AM
Subject: Sinemet vs. Lyrica

I’m a 73 year old female and have been on Requip for 10 years for RLS. I am also on a very low dose of Celexa (10mg). I have been experiencing augmentation with the Requip for some time now, and am taking 6mg a day to control the RLS. I have to keep increasing my dose every 3-4 months and don’t want to go any higher. I recently saw two neurologists for an alternative plan. One neurologist thinks I should switch over to Lyrica and lower the dosage of Requip, and the other wants to put me on low levels of Sinemet taken with Requip.

My concern about Lyrica is the weight gain as I am already 50 lbs overweight, and my concern with Sinemet is the augmentation that also occurs with it (according to what I’ve read) and I don’t want to trade in one augmentation for another. What do you suggest I do? Will I have more benefit from Sinemet/Requip or Lyrica/Requip?

Layla M.
New York

Medical Reply

Adding Sinemet to Requip is not a good idea as it will likely increase the augmentation problem.

Adding Lyrica (which often does cause weight gain) might enable you to decrease the Requip a little but as you have augmentation, the better treatment is to get completely off the Requip (and all short acting dopamine drugs). To get off the Requip, potent opioids are needed (oxycodone, methadone) and this often requires the expertise of an RLS specialist (who has more experience than your current neurologists).

An alternative might be to switch to Requip XL or Mirapex ER (the long acting dopamine agonists seem to have less issues with augmentation) but that also requires significant expertise with the use of these drugs for RLS.

A Reply from Layla

Sent: Tuesday, November 04, 2014 8:02 PM
Subject: Re: Sinemet vs. Lyrica

Just so I understand exactly what you're saying because I'm ready to take the plunge. Are you suggesting I quit Requip altogether in favor of taking only Lyrica?

Layla M.

Medical Reply

Although Lyrica is a very good RLS drug (with some recent articles to back up our clinical experience), it is not up to the task of controlling the marked increase of RLS symptoms that occur when stopping a dopamine agonist like Requip (especially when augmentation has occurred). Only the potent opioids are adequate to relieve those RLS symptoms. Lyrica may be added several weeks later to help reduce or possibly eliminate the opioids.

Sent: Thursday, November 06, 2014 5:55 PM
Subject: Horizant

My neurologist has put me on Horizant after recovering from my augmentation with Mirapex. I've only been on it for a few days so I'm not sure how effective it will be. I'm also still weaning off the Tramadol I was taking for the transition off Mirapex. My biggest complaint is having to take the Horizant at 5 pm with food. My question is HOW MUCH food is necessary for the Horizant to absorb effectively?

My schedule doesn't allow for a full meal at 5 pm. The only thing I remember my doctor saying was that the higher in fat content the better, but not how much.

Medical Reply

Your neurologist is correct that Horizant does get much better absorbed with a larger fat content meal. However, the change in absorption is somewhat variable and I would not worry that much about how much high fat content food you eat at 5-6 pm with the Horizant pill. If you feel that you need more of an effect from the Horizant, you might experiment and take it with a full, high fat content meal and see if that helps.

Horizant (even when taken properly) might not be up to the task of treating the increased RLS symptoms when stopping Mirapex and trying to taper off tramadol. You may need some tramadol on board to do well.

Sent: Wednesday, November 12, 2014 6:10 PM
Subject: RLS with Narcolepsy

I have been taking 200 mg Provigil daily for narcolepsy which does help somewhat. Still very sleepy but I am at least able to drive, read and sit with out uncontrollable sleepiness. Provigil does help with cataplexy symptoms. Hardly ever fall down anymore.

I have been having RLS symptoms for about 5 years. In the evening and driving etc. my legs are so uncomfortable. They do not jump but feel almost too big for my skin. I feel like I need to stomp or squeeze them. My calf muscles feel so tight. I am always squeezing, stretching but no relief. At night it takes couple of hours for me to be able to stop moving legs and find restful position. Do these symptoms seem normal? I tried Requip last year. It did help but I could not stand the feeling of lethargy in my muscles during the day. Was not worth feeling bad all day for a couple hours of relief in the evening. I have a very physical job. Doctor wants to try me on Mirapex. I am worried about the same reactions and also I have seen it causes daytime sleepiness in many patients. I certainly don't need any help feeling sleepy. Do you think it is worth trying?

I was taking 1 Valium nightly ( not sure of dosage ) for symptoms after spinal fusion and that was actually helping my legs more than anything. Does that make sense to have worked?
Just not sure what to do. Do not like taking medicine everyday but would love to not want to chop my legs off every night. Never feel rested.

Diana C.

Medical Reply

The symptoms that you are describing at nighttime are typical of RLS. It is quite likely that Mirapex will cause the same side effects as Requip. In addition, both of those drugs may cause worsening of RLS (called augmentation) in a high percentage of patients over time. If you do need a dopamine agonist, the Neupro patch would be a better choice that would have less concern for all the above issues.

Valium and other benzodiazepines usually do not lessen RLS symptoms but do help RLS patients fall asleep (in which case the RLS symptoms are gone of course while asleep). For some patients with increased anxiety, the benzodiazepines may reduce the anxiety and thus reduce the RLS symptoms that were increased by the anxiety.

Horizant, Lyrica or gabapentin may be better choices for your RLS and will also help you sleep.

You might want to discuss Xyrem with your doctor for your narcolepsy/cataplexy and it may help these problems in conjunction with the Provigil and also help you sleep better.

Sent: Friday, November 14, 2014 7:49 AM
Subject: Might you be able to help me??

I have struggled with RLS for many years and it was just a couple of years ago that I heard about Ropinirole and mentioned my RLS to my primary physician. She wrote my a prescription and I cannot BEGIN to express the tremendous relief I have experienced during the day and at night.

Unfortunately, although I take a very small dose at noon (.5 mg) and again at 6pm and then 1 mg right before bed, I find that I almost dread taking the medication because I know I am going to feel horribly nauseated. However, when I opt to skip the medication because I don’t want to feel nauseated, I am ALWAYS sorry that I did, because I simply cannot focus on anything except the RLS symptoms when they (inevitably) hit. And it seems to take almost an hour for the Ropinirole to kick in, so it’s a very long and stressful wait.

I was fortunate to discover your website when I entered a Google search for “Ropinirole upsets my stomach.” Reading through much of your site, it is clear that I am not the only one to experience this side-affect and also that there is a myriad of options that I might be able to consider which would be as effective but without the nausea.

I am also taking fluoxetine and Vicodin (5 mg 3x per day for spinal stenosis).

While I will certainly print out information from your website and take it with me to my next doctor’s appointment, I would welcome any thoughts/suggestions from a physician who specializes understanding and treating RLS. (Note: I do take my doses with a small meal.)

Medical Reply

Marti W.
Age 53

You seem to have already read about taking the ropinirole with food since that does help (but may delay the onset of action by 30-60 minutes). More food would likely decrease the nausea better than the small amount of food you are currently taking with the pill. Another option would be to take Zofran (2-4 mg) 30 minutes before taking the ropinirole but I generally dislike having my patients take a pill to counteract the effects of an active medication (I would rather change to something else unless I am stuck).

Another option would be to change to the Neupro patch. It would cover you all day long and the lower more steady blood levels (compared the quick peaks and troughs of ropinirole) may possibly reduce or eliminate the nausea.

I currently recommend keeping the dose of ropinirole to a maximum of 1 mg per day to avoid augmentation (a worsening of RLS due to taking a dopamine agonist like ropinirole) as over 50% of patients may suffer this consequence over time (even after a decade or more). However, changing from ropinirole to a non-dopamine agonist drug is much more difficult and requires greater expertise than most doctors (especially your primary doctor) possess.

The fluoxetine typically makes RLS worse but if this drug is necessary, then you should stay on it. Wellbutrin may work well instead and does not affect RLS. The Vicodin helps RLS and you may notice that when you take an extra pill that your symptoms are diminished.

Sent: Sunday, November 23, 2014 8:39 AM
Subject: Augmentation

I am a 63 year old woman who has had severe RLS/WED most of my life. I have it all over my body except for my head and abdomen. I was on ropinirole for 7 years, which worked well, but I started to get augmentation. My neurologist has put me on the Neupro patch but I need the 4mg patch in order to quell symptoms. I'm worried that this is too high a dose and may in the long run feed the augmentation.

Even this dosage of patch does not allow me to sleep, so I need to take another drug and have been trying gabapentin or hydrocodone. I really don't like the way the gabapentin makes me feel and the hydrocodone doesn't work very well. I am still not sleeping. I feel that I should probably get off of all dopamine agonists, but the prospect of having symptoms many times what I already have scares me.

Karen T.

Medical Reply

You do have valid concerns about getting augmentation from the higher doses of Neupro (only 3 mg/day is approved by the FDA for treating RLS and higher augmentation rates were found with the 4 mg dose). It is likely that you would have fewer if any symptoms with Neupro at 6 mg/day but that might further increase the risk of augmentation. There are some newer studies using Mirapex ER which so far seems to have caused little problems with augmentation but that study lasted for only a year (we need a few years at least and 10 years would be better).

What I tend to do with patients like you is to get you off all dopamine agonists using more potent opioids like methadone and oxycodone (which can make this transition almost painless). This typically works much better and the RLS calms down after a few weeks off the dopamine agonists and is much easier to treat. However, most doctors (even specialists like neurologists who often care for these cases) are not willing to prescribe potent opioids in this situation and do not have the expertise to guide this transition.

Sent: Monday, November 24, 2014 3:31 AM
Subject: Questions Please

I have managed to find a RLS specialist in my area but I cant see him for another 4 months.

1. Can augmentation occur with anti seizure medications?

2. I get RLS and PLMD 24/7. My PLMD cause me more discomfort than my RLS.

I tried the Neupro patch and it had no effect I thought it even might have made my RLS worse?

My doctor has just started me on the starting dose of 0.125 mg Pramipexole and straight away I am thinking this has made it slightly worse again? Does this make any logical sense?

Have you seen this before? Can a dopamine agonist make RLS/PLMD worse?
Do you have any advice on this situation. Shall I try increasing the dose even though I think its making it worse? Is this just trial and error?

3. I think my next step is going to an Opioid but this doesn’t help with PLMD does it?

4. Is stress/anxiety a trigger for RLS?

Adam H.

Medical Reply

Augmentation does not occur with any of the anticonvulsant medications.

It is unusual for Neupro to make RLS worse but that could happen and I have seen that phenomenon with other dopamine agonists like pramipexole and ropinirole. It is possible that the paradoxical worsening might occur at lower doses but normalize with higher doses. You are correct that only trial and error will determine whether increasing the dose will help your RLS/PLM symptoms.

The anticonvulsant medications help PLM less than the dopamine agonists but more than the opioids (which do have some but limited effect on PLM).

The next step of therapy would be the anticonvulsants (assuming the dopamine agonists fail even at higher doses) followed by opioids.

Stress/anxiety can make RLS worse.

A Reply from Adam

Sent: Tuesday, November 25, 2014 5:42 AM
Subject: RE: Questions Please

I will be upping the Pramipexole this week. Should I split the dose if I get day time symptoms as well? I currently take 0.088 mg before bed.

Adam H.

Medical Reply

Many doctors do advise splitting the dose to treat earlier in the day symptoms. However, once of the concerns is that augmentation increases as the dose of the dopamine agonist drug (pramipexole) increases. You are currently on the lowest dose and I recommend (in my articles and other publications) to keep the daily dose to a maximum of pramipexole .25 mg.  Unfortunately, although the risk is much lower, augmentation can occur at even the lowest doses of pramipexole.

Sent: Tuesday, November 25, 2014 3:20 AM
Subject: RLS problems with pramipexole?

I live in Durban South Africa. Have been on Pexola (pramipexole) for the last 3 year. No side effects except nausea when I increase the dose to half a tablet of the lowest strength. The symptoms are very mild in comparison to what I've read on your site. But I would like to change to another medication if possible. Which one can u suggest? It needs to be safe and effective.

Santa M.

Medical Reply

Nausea is common with pramipexole (Pexola) and is dose related. Therefore, an increase in the dose will increase the nausea. The nausea may be significantly decreased by taking the medication with food but that does delay the onset of action by 30-60 minutes or more.

Alternate medications include the alpha-2-delta drugs like gabapentin or Lyrica. Lyrica works better but is likely more expensive while gabapentin is much more unpredictable but cheaper.

If those don't work well, then opioids (tramadol, oxycodone, etc.) can be very effective and safe if given in low dose.

Sent: Friday, November 28, 2014 4:18 PM
Subject: Taking Lyrica same time as Lexomil because of RLS

For several years I have been taking codeine 120 mg + acetaminophen daily, even when I'm not in pain. As soon as I try and stop, I suffer from severe RLS. I take a 1/2 Stilnox to sleep at night but the RLS wakes me up. So I carried on taking the codeine so my doctor prescribed Lyrica 75 mg which worked wonders for the RLS BUT I was a bit of a zombie. I'm now suffering from depression and anxiety because I believe I will never be able go stop taking the codeine.

My doctor has prescribed lexomil, 4 x 1/4 every day so I have stopped the codeine BUT the RLS has come back worse than ever. Can I take the Lyrica as well as the lexomil and at what times during the day? I work in a school so have to be able to drive and be coherent!

Eileen H.
France

Medical Reply

The first issue is that the codeine does help RLS but the paracetamol (acetaminophen/Tylenol here is the USA) does not help RLS so can only increase the risk of liver or kidney damage over time without adding any benefit. I generally only prescribe “pure” opioids like oxycodone or methadone but most doctors will not prescribe these as they are more potent (in which case, you just take much less of them).

Stilnox (zolpidem/Ambien) and Lexomil (bromazepam, a benzodiazepine drug like Valium or Xanax) do not help RLS but do help promote sleep (unless the RLS symptoms are bad enough to prevent sleep). Lexomil should not be taken during the daytime for treating RLS as it will make you sleepy and not fit to drive or work at school.

Lyrica is a very good RLS drug but for some patients may need to be taken at higher doses (like up to 300 mg) which may cause significant sedation especially if combined with other sedatives like Lexomil.

It is not surprising that stopping the codeine will make your RLS go crazy as you do not really have any real treatment for RLS once you are off the codeine.

If Neupro is available in your country, it may be a good drug to start for your RLS. Other choices would include long acting pramipexole or ropinirole which work better in the long run than the more common short acting versions of these drugs.

A Reply from Eileen

Sent: Friday, November 28, 2014 5:12 PM
Subject: Taking Lyrica same time as Lexomil because of RLS

I am amazed that since taking the lexomil (only since yesterday) 4 x 1/4, I have had very little withdrawal symptoms from the codeine. It is true that it makes me a bit drowsy but it is supportable. Is that because I am just replacing 1 evil for another? And because the Lyrica 75 mg completely takes away my RLS, I would like to take this in the evening before going to bed and cut out the Stilnox. So that would be the lexomil during the day and then Lyrica before going to bed. This would achieve everything I desire, stopping the codeine without having withdrawal symptoms and avoiding my severe RLS.

Are there any contraindications in mixing these 2 meds? I'm hopeful that in a couple of weeks I can stop taking both by cutting down progressively.

Eileen H.

Medical Reply

Benzodiazepines like Lexomil are helpful for preventing withdrawal symptoms from coming off opioids. The benzodiazepines usually do not help RLS symptoms but some patients like you may find it helpful to reduce your RLS symptoms. However, you still have the issue of taking a sedating medication during the daytime which can easily impair your ability to drive and work.

I have many patients who take Lyrica only in the evening near bedtime as they get too much sedation from the drug (which is actually helpful around bedtime since it helps promote sleep). However, taking Lyrica and Lexomil together can increase problems with sedation. Otherwise, there is no contraindication to using the 2 drugs together.

You must remember that when you try to get off the Lyrica and Lexomil (even if you do this slowly), you will have nothing that is treating your RLS so you should expect the RLS to get much worse (unless you supply another treatment).

Sent: Tuesday, December 02, 2014 11:35 AM
Subject: Treating augmentation?

I am a 53 year old man who has had RLS symptoms for about 10 years. In the last 2 years the symptoms have become progressively worse. I sleep an average of only 6-8 hours per week. I recently was prescribed Requip but experienced horrible side effects; depression, severe anxiety, feelings of impending doom, and auditory hallucinations. The next round of medication was Carbidopa which I am stopping immediately due to worse side effects than I experienced with the Requip. I am sure the depression and anxiety are directly related to the medication as I have never been someone who has ever dealt with depression.

The RLS symptoms are what I would consider to be at a chronic level. As soon as I get into bed the symptoms begin, severe pulling sensations so bad that I look like a toddler who's legs are constantly in the air kicking and squirming. I guess this is just my cross to bare as I have run out of solutions. I will be quitting my job soon and hopefully can get put on disability. This is a debilitating condition that people need to be aware of just how bad it can get.

Ron C.

Medical Reply

There are many treatments for RLS and almost all patients can achieve excellent relief of their symptoms with proper care. There is no reason to suffer from your RLS symptoms even though you have had bad results with one class of drug treatment (dopamine drugs). The dopamine drugs are well tolerated by many but do have the potential for significant side effects in susceptible patients like you.

The next class of drugs to consider are the alpha-2-delta drugs which include Horizant (FDA approved for RLS but can be expensive), Lyrica or gabapentin (generic and inexpensive but somewhat unpredictable to use). They often work very well. If these drugs are not successful, then tramadol or opioids are the next choice to consider.

There is also a non-medication solution called the Relaxis vibration pad which many RLS sufferers have found very helpful.

The bottom line is that you should be able to live a very normal life with proper treatment of your RLS and it should not be necessary to consider disability based on this disease (once you have seen a doctor who knows how to treat the disease and most do not have that capability for tougher cases).

Sent: Wednesday, December 03, 2014 12:51 AM
Subject: Treat RLS with Gatorade & seltzer water or gabapentin?

I am a 30 year old woman with 3 children. I starting having RLS symptoms when I was pregnant 3 years ago and then the symptoms disappeared after I gave birth. Now it is back and I suffer from it about 2 to 3 times a week. When I have these symptoms I get very little sleep.

I told my psychologist about it and she put me on gabapentin. But before I could fill my prescription her nurse called me and told me to try Gatorade or seltzer water. I have not tried it yet. Are there any facts saying that Gatorade or seltzer water work? Should I start taking the gabapentin? And if so what dose should I start at and what are the side effects?

Sarah W.

Medical Reply

The nurse may be confusing leg cramps with RLS as Gatorade or seltzer water have absolutely no effect on RLS (and likely little or no effect on leg cramps).

Gabapentin is a reasonable choice for treating RLS. There are much better drugs in the same class such as Horizant (which is approved for RLS unlike gabapentin) or Lyrica. Since gabapentin is erratically absorbed, doses need to treat RLS can vary from 200 mg to 3600 mg per day so it is very difficult to suggest proper doses that will be effective in any given person. However, most doctors will start with doses ranging from 100 mg to 300 mg taken 1-2 hours before bed.

Sent: Wednesday, December 03, 2014 3:47 AM
Subject: Iron levels, Prozac and inflammation in RLS?

I just want to start of by saying that your website is great and must be helping people all over the world.

My son is 25 and has been diagnosed with RLS.

Below are his Serum Iron levels:

Iron Binding Saturation 56.0 %
Serum Iron 29.0 umol
Unsaturated Iron Bg. Capacity 22.2 umol

I know they appear normal but I was wondering if he could try iron tablets anyway just to see if it helps? Can this cause any harm?

He is on day two of Prozac and it has made his RLS worse as expected. Should he try and stay on it for a couple of weeks to see if the RLS dies down or would you expect for it to stay bad until he comes of the Prozac?

Does chronic inflammation within the body play a part in RLS?

Ann S.

Medical Reply

We rely more on the serum ferritin levels rather than iron levels as the ferritin levels are more representative of iron stores which is a more sensitive test for iron deficiency and is better correlated with RLS. If the serum ferritin levels are below 50-75 then iron supplementation may be helpful.

Prozac and most SSRI medications typically make RLS and that effect does not decrease with time. If appropriate, Wellbutrin is more RLS friendly and would be a better choice if it is effective.

Despite one website claiming that inflammation is definitely the cause of RLS (and presenting a wealth of circumstantial evidence in an attempt to prove this theory), there is no credible medical/scientific evidence currently available to support this supposition.

Sent: Thursday, December 04, 2014 7:17 AM
Subject: iron infusions

When at age 57 (15 years ago) my RLS became very severe my ferritin was 11 and with pills I could up it to eventually 290. It did nothing to make my RLS any better. I stopped the iron pills and after a few months my ferritin was down to somewhere in the hundreds. I have learned that when I take 1 pill every other day I can keep it around 120.

Does this imply that iron infusions can do nothing to me because I l already reached a high ferritin with pills? I really would like to know if they can be of any use for my RLS.

Corrie A.

Medical Reply

The serum ferritin level is one of the best indicators as to the amount of iron stores in the body (a bone marrow biopsy is the only better test). However, for RLS, the more important iron level would be that in the brain. It would take a spinal tap to get CSF (Cerebrospinal Fluid) to truly assess the level of iron in the brain which may correlate best with RLS symptoms.

Therefore, it is possible that even with a very reasonable ferritin level of 120, you still might be low on brain iron so a transfusion might be helpful. I have had some patients who clinically responded to iron infusions (given when they were below 50) start having symptoms when their ferritin levels dropped below 150 and they did respond well to a repeat iron infusion.

The only way to know if it would be helpful in you would be to get one and most doctors would not be too excited about giving and iron infusion to a patient with a good ferritin level.

Sent: Thursday, December 04, 2014 8:33 AM
Subject: MIRAPEX AND RLS - RECURRING HEADACHES

I have been taking Mirapex for several years for RLS. Presently (and for the past few years), I have been prescribed pramipexole – 1 mg. For the last three months, I have been experiencing mild headaches on the right side of my temple; always at this particular place. I consulted my physician and was informed that I am most likely experiencing fatigue (due to moving and other events). However I now feel rested and am still experiencing these headaches.

I simply take an over-the-counter drug and it passes. In addition to the headaches, I might add that there is a slight ringing in my right ear which started at the same time as the headaches. Of course, one always imagines the worse with recurring headaches. I did mention to my physician that I was concerned about a tumor … he informed me that a tumor does not present this type of symptom ???

Jane M.

Medical Reply

Headaches are not a very common side effect of Mirapex/pramipexole and since you have been on this medication for years, which would make it even more unlikely. You should therefore follow up with your regular doctor or a neurologist for the headache problem.

You are on a high dose of Mirapex (pramipexole) that commonly leads to augmentation (a worsening of RLS due to being on a short acting dopamine drug like pramipexole) so if your RLS symptoms worsen, do not continue to increase your dose but rather seek alternative therapy.

Sent: Thursday, December 04, 2014 2:29 PM
Subject: Taking Requip like mints

I am 63 years old and RLS runs in my Family. I've had it sine about 1985. It is reaching severe levels. I tried Carbidopa/Levodopa but I eat a LOT of Protein and the Carbo reacts by greatly multiplying the RLS for a few hours. NO Go, there. I am currently on Ropinirole (Requip) at 3 mg/day. Sometimes more. I have to take one about Noon, then again about 4-5 PM. At bedtime (actually about 90 min. before) I take 2mg of Ropinirole and Diazepam 5 mg. I find the Ropinirole is becoming less and less effective.

I have been prescribed Robaxin, but refuse to take it since it is rumored to be an antagonist for RLS just as diphenhydramine (Benadryl) is. I drive for a living (about 250-350 miles per day) and sometimes it is very difficult to keep my foot on the accelerator or brake. I can't fog up my brain because of my driving. I'm rapidly approaching the 10 mg limit on Ropinirole. Suggestions?? (I am allergic to Vicodin and most pain meds make me itch - and I can't take Benadryl!)

Millie W.

Medical Reply

The problems that you had with Sinemet (Carbidopa/Levodopa) have nothing to do with your protein intake but rather due to augmentation. The same problem is occurring with ropinirole.

Augmentation 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 which might be difficult in your case if you itch with all of them) will be able to control those symptoms (Horizant, Lyrica or gabapentin will only help marginally in this situation).

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.

An alternative treatment (which is still fairly new) is to change to a long-acting dopamine agonist. The Neupro patch is the only FDA approved long-acting dopamine agonist for treating RLS (up to 3 mg/day) and may work well for patients who are having augmentation on relatively lower doses of Requip (up to about 3 mg/ day) or Mirapex (up to about .5 mg/day). For higher doses of those drugs, a switch to long-acting Mirapex ER or Requip XL may be helpful (but these drugs are not approved for treating RLS so may not be covered by insurance plans). When transitioning from short-acting dopamine drugs to long-acting ones, the dose of the long-acting drug is started at the lowest dose and may be increased on a weekly basis as needed. The short-acting drug can be used to supplement the long-acting ones until the optimum dose of the long-acting dopamine drug is found.

Robaxin does not help or worsen RLS but might make you sleepy during the day.

Valium has a very long half-life (up to 100 hours) so remains in your body around the clock and may easily contribute to your daytime sleepiness. There are much better and shorter acting sleeping pills that can be substituted if necessary.

Sent: Monday, December 08, 2014 10:44 PM
Subject: Baclofen and RLS

I have written you before, while trying to find a medication that will help control my RLS. For almost 7 years I have tried Mirapex, Requip, Lyrica, Neurontin, L-Dopa and Endocet. Mirapex worked the best, until it caused me lots of problems and I was told to stop it. Stopping was another complication. Since Mirapex, I have not found anything that works for long.

My restless leg problem is not just at night. It is, also, in the daytime. I feel there is something more going on and I seem to be getting worse. For some background -- I am 76 years old and have a very bad back. I was 5'6" and I am now barely 5'2". In lay terms, my back is collapsing. Several months ago, a neurosurgeon told me that my back was too severe for a surgery to be safe. I think he felt I was too old to take a chance on a surgery that may or may not solve my back pain. By the way, I asked him if my back could cause my Restless Legs. He said he has never heard of this and, more or less, scoffed at the concept of RLS. Another subject for another day. Just frustrating.

Tonight, my husband came home from his neurologist with samples of Baclofen.. In looking it up, I found it is sometimes used for spinal injuries. Although I have not had a spinal injury, MRIs do show scoliosis, multiple bulging discs, partial collapse of L2 vertebral body and spinal stenosis. The pain is awful. In my opinion, back pain is much easier to live with than RLS. My question for you is this -- I am wondering if you think the above back pathology could be causing Restless Legs. Additionally, do you think Baclofen could help me? Have you heard of bad or injured backs causing Restless Legs? Can Baclofen work long range? So many of the RLS meds augment or backfire on me. Plus, withdrawal is awful.

Anna G.

Medical Reply

Baclofen is not a drug that helps RLS (at least not for the vast majority of RLS sufferers).

The back pain may increase RLS symptoms just as other stresses such as anxiety, irritable bowel, headaches, etc. may worsen RLS symptoms indirectly.

It is hard to comment on your therapy but I can tell you that almost all patients who see a real RLS expert will eventually have excellent relief of their RLS symptoms.

Sent: Wednesday, December 10, 2014 6:43 PM
Subject: RLS symptoms???

6 years ago I had my son. I had RLS at the end of my pregnancy as well as some numbing or tingly or lightness in my arms. I'm not pregnant now but it has come back. I've been walking more steps and getting more exercise but the tingles are everyday lately in legs and occasionally my arms. What could be the issue or root cause?

Betty D.

Medical Reply

RLS often first presents in the third trimester of pregnancy. As you have found, the symptoms will then go away shortly after delivery. However, the RLS symptoms have a very good chance of returning and staying years after the pregnancy.

We are still looking for the root cause of RLS. We do know that genetics are involved and may combine with environmental and other medical factors to bring out RLS problems in susceptible individuals.

Sent: Friday, December 12, 2014 4:59 AM
Subject: Klonopin & RLS/PLM

My doctor has prescribed me 0.5 mg at night of Klonopin to help my RLS/PLM and my anxiety. I have tried SSRI and SNRI but they make me worse.

Do you have any tips or advice on taking Klonopin as I know it can cause problems (tolerance, addiction, withdrawal etc) Therefore should I take breaks on the med for example take a couple of days off a week from it?

Adam H.

Medical Reply

Klonopin is a reasonably addictive drug (meaning tolerance and dependence can occur relatively easily). Since it has a 40 hour half-life, skipping a day or two intermittently does not help that much to prevent those problems. Furthermore, it may cause daytime sedation. It may help anxiety but does not help RLS. It does not decrease PLM but does decrease the arousals from PLM. However, a shorter acting benzodiazepine drug like Xanax may accomplish the same goals with less concerns.

Sent: Monday, December 15, 2014 1:50 AM
Subject: Very mild RLS with severe PLMD (about 18 seconds per twitch)

I am a 62 years old Asian male residing in Hong Kong and I believe I have PLMS since I was 20 to 30 years old, with very rare instances of mild RLS. Although I had always woke up feeling sleepy and could usually go back to sleep if I woke up too early and had time for more sleep, the effects of sleep disturbances have recently worsened to affect my daily functions, perhaps due to aging.

I gather from your letters on www.rlshelp.org that PLMD does not need to be treated medically unless RLS is also present. I am not sure if this applies to my case as I do occasionally have very mild RLS which can be easily overcome by small dose of either codeine syrup which unfortunately also contains antihistamine, or half of 7.5mg of Immovane, or lately .25mg of Klonopin as prescribed by my doctor.

I had tried half a tablet of Sinemet 25/100 for about a week but I woke up feeling that my brain was not switched off during my sleep. It's not likely I will try that again after I found out about augmentation from www.rlshelp.org. I had also tried half a tablet of .125 Mirapex one night, but was not able to sleep at all, before I found out about Mirapex augmentation.

I have convinced my doctor to let me try Ambien, as advocated. I was given 10mg tablets but I will try to see if I can break the tablet down to quarters and go with .25 mg. If I were able to get codeine without antihistamine, what starting dosage and maximum dosage will you advise to avoid addiction?

The local medical community does not seem to know much about RLS/PLMS and cannot really appreciate the symptoms when given verbal descriptions, and can barely understand it after being shown videos of the symptoms. I have ordered the second edition of your book so that I can show them to my doctor.

David

Medical Reply

 It is not clear from your letter that you have PLMS or PLMD. The reason that we usually don't treat PLMS is that we have yet to be able to show that PLM are associated with poorer sleep or sleepiness during the daytime. So unless someone wakes up (usually an RLS patient with advanced disease) with leg kicks while awake that prevent them from falling back asleep, treating the PLM has not been proven to be helpful.

The drug that treats/reduces PLMS the best is Mirapex (Sinemet is also quite good) so since your sleep was not improved, it is likely that PLM are not the issue (although the dopamine drugs can cause insomnia by themselves). The other drugs that we use for RLS have much less of an effect on PLMS (especially opioids). Gabapentin or Lyrica may decrease arousals from PLMS but I would still not necessarily recommend those drugs especially since you have not had a sleep study.

It might be better to have a sleep study to see if you really even have PLMS and to rule out other problems like sleep apnea. Ambien and Immovane are reasonable sleeping pills but you may need more guidance from a sleep specialist.

Sent: Wednesday, December 31, 2014 4:07 AM
Subject: CBD (Cannabidiol)

I am a 61-year-old retired science teacher. I've been suffering from RLS for about 40 years on and off. In the past 6-12 months it has become increasingly severe affecting my daily activities. Just the thought of sitting in a movie theater, flying, playing table games with friends, and even dining out caused me extreme dread. Not to mention the inability to sleep, tossing and turning all night, insomnia, depression.

My doctor prescribed 2 mg of Requip (to start!). After reading your website I discovered that that was way too much to start with. I only took 2 doses and decided against it. So, I've been doing all the other recommended natural therapies: massage, Epsom salts, limited alcohol, limited caffeine, exercise. I also started taking Ambien nightly.

Over Christmas we visited my daughter in Denver. Since I had read on your website that marijuana was effective, I thought I'd try it. However, after purchasing enough to make 2 cigarettes, I decided NOT to smoke it. I do not like feeling high. My son-in-law visited a clinic and found a CBD gel pen which dispenses the product in 2 mg doses. I tried one application on the bottom on my foot.

You must understand that I was certain that something so simple could not possibly alleviate my RLS. The effect was almost immediate and miraculously amazing. Within an hour I had no sensations in my legs or the rest of my body - - no twitching, no uncontrollable urge to move. I used the cream once or twice a day for the next week and have been almost symptom free. I still occasionally feel the urge - - but the relief as been from 90 - 100%. I still cannot believe it. I haven't taken an Ambien since starting with the CBD. I go right to sleep and sleep all night. It is absolutely incredible to me. I still cannot believe it and I am just waiting for the symptoms to come back as if my body is playing a cruel joke on me.

We brought the CBD pen back to Florida in our checked luggage. I will continue to use it as long as it works for me.

Do you or your members have any experience with using CBD for RLS? If so, perhaps they could share their stories with me. I would like to know if the effectiveness wears off after a period of time or if more applications are required to achieve the same results. I'd also like to know if anyone has used it long term and whether side effects have been experienced.

Jorjann K.

Medical Reply

We actually have a lot of experience with marijuana and RLS. The majority of patients have found that the best route for alleviating RLS symptoms is inhaling the drug (cigarette, vaporizer, etc.). It kicks in typically in about a few minutes but only lasts 1-3 hours making it very good for patients whose RLS symptoms are active at bedtime and only last a few hours.

Using marijuana otherwise (ingesting it, or topically, etc) usually is not that helpful. Many patients get high but do not get relief from their RLS symptoms. Your case is clearly different.

Normally, the marijuana does not lose its effect on RLS over time but all this is based on anecdotal reports of patients as there are no studies on this issue. We have less information on the purified marijuana products like CBD so it is difficult to predict what will happen over time.

A Reply from Jorjann

Sent: Wed, Dec 31, 2014 at 10:01 PM
Subject: CBD (Cannabidiol)

Does your group have any experience using the CBD topical? If so, in what situations has it shown the greatest benefit?

Jorjann

Medical Reply

We actually have a lot of experience with marijuana and RLS. The majority of patients have found that the best route for alleviating RLS symptoms is inhaling the drug (cigarette, vaporizer, etc.). It kicks in typically in about a few minutes but only lasts 1-3 hours making it very good for patients whose RLS symptoms are active at bedtime and only last a few hours.

Using marijuana otherwise (ingesting it, or topically, etc) usually is not that helpful. Many patients get high but do not get relief from their RLS symptoms. Your case is clearly different.

Normally, the marijuana does not lose its effect on RLS over time but all this is based on anecdotal reports of patients as there are no studies on this issue. We have less information on the purified marijuana products like CBD so it is difficult to predict what will happen over time.
 

Sent: Wednesday, December 31, 2014 7:19 PM
Subject: RLS w/arm spasms

I have been having RLS about 2X a week, but what is strange is when I get frustrated it starts to include my arms. Is this typical.

Lynn W.

Medical Reply

Stress, anxiety, frustration can make RLS worse. About 10% of RLS patients get spread of RLS symptoms to their arms when RLS worsens so that is not very unusual also.

Sent: Thursday, January 01, 2015 6:13 AM
Subject: Requip not working like it used to and I need some relief!!

A little background for you... I have been suffering from severe RLS from week six of my pregnancy. I am now 31 weeks pregnant and my RLS has become unbearable. It is pretty much constant now 24 hours a day and affects both the arms and legs. With the consent of my OB, I began taking Requip at around week 8 of my pregnancy. At first I could get by with only one mg at night and that seemed to to the trick. Eventually I found myself needing to increase the dosage to 2 mg a day or two pills, one taken in the evening and one taken in the afternoon. For the past several weeks I've noticed an increase in symptoms so that I'm lucky if I can get 3 hours of sleep a day.

I'm now taking 3 mg a day and I hate that I have to take this much. But even at this dosage its barely manageable and the side effects of nausea and sleeplessness have greatly increased. I do not want to take additional medication because I fear for my unborn baby. I am however considering taking 100 mg of trazodone with the Requip before bedtime so I at least can get some sleep. Please I need some help. I am absolutely miserable and am afraid that I will need to be hospitalized or something if I continue down this path. Can you offer any insight that would provide some relief?

BethAnn

Medical Reply

 We do have some new guidelines for treating RLS during pregnancy. Requip (and the other approved dopamine agonist, Mirapex) are not indicated for RLS during pregnancy so should not be used. Trazodone is also not recommended for pregnant RLS patients.

We would prefer that pregnant patients take no prescription RLS medications when possible. Daily exercise and other conservative measures such as making sure blood iron levels are as high as possible should be implemented first.

If those fail to make RLS symptoms tolerable, then medications may be considered. Clonazepam in low dose may help sleep and low dose Sinemet may be helpful.

For more serious cases, opioids like oxycodone or methadone at low dose may be considered. Often these cases need an RLS specialist who is very familiar with RLS and its treatment in pregnant patients.

Sent: Saturday, January 03, 2015 2:07 AM
Subject: Utah Pediatric Specialist

My husband and I live 45 minutes south of Salt Lake City. Our two little boys that we adopted as infants were recently diagnosed with Restless Leg Syndrome and Periodic Limb Movement Disorder by a doctor at the Utah Sleep and Pulmonary Specialist clinic.

Our boys have also been diagnosed with Global Developmental Delay, Autism Spectrum Disorder, Sensory Processing Disorder, Impulse Control Disorder and a variety of other health conditions. Unfortunately their start in life was not ideal. Their biological mother used a large list of recreational and prescription drugs while she was pregnant. Both of their biological parents suffer from physical and mental health conditions for which they self medicate with drugs and alcohol.

We have a good primary care physician. We have tried play therapy as well as an extensive list of psychiatric medications to help with sleep and day time behaviors with no real success. With the approval of their mental health prescriber, we slowly discontinued all psychiatric medication for both boys about a year ago when the movement disorder became worse for our oldest. We suspected medication induced dystonia from the combination of Lithium and Resperidone.

Now, with the new diagnosis of Restless Leg Syndrome and Periodic Limb Movement Disorder and my research into these, I suspect the medication was making the Restless Leg Syndrome worse. Our boys tend to be very medication resistant and hyper metabolize medication. Our sleep specialist has our 7 year old on Gabapentin 500mg at night. Our 8 year old became more angry and violent during the day with Gabapentin, which was unfortunate because it did seem to stop his movements at night so he slept better. Our 8 year old is now on clonazepam. Both boys seem to get some relief for the first part of the night but begin to stir about 2:00am and are usually awake by 4:00am. Both boys still have a difficult time falling asleep but are now usually asleep somewhere between 10:00 pm and 11:30 pm.

My concern is that neither boy seems to sleep very great yet and their day time symptoms are not yet addressed at all. Our boys both have low IQ scores, 72 and 61, but can not sit still and concentrate long enough to progress educationally. They are in fabulous classrooms with caring, dedicated teachers who try hard. I feel that we need to take the boys to a doctor who specializes in treating Restless Leg Syndrome in children.

Staci L. M.

Medical Reply

Treating children with RLS can be very difficult. The medications that we use for RLS are only tested on adults so we have to treat with off label medications. Gabapentin and clonazepam are amongst the few drugs that most experts will use for RLS in children. Their ferritin/iron levels should be optimized first (over 50-75 if possible) as this is a conservative measure that might be helpful.

Sent: Wednesday, January 07, 2015 3:50 AM
Subject: RLS and Meigs Syndrome

I am a 68 year old woman and I heard yesterday that I have Meigs syndrome. Most of the times it is a benign tumor and once the tumor is taken out all is well again. although there is a very small percentage of women who have a non benign tumor.

My RLS is very bad and the last 10 years I have been living only at home, too tired to have visitors (most of the time). I have a good neurologist and am on methadone, Lyrica and Tramadol (daytime).

In the hospital 2 doctors have told me (a radiologist and a gynecologist) that my RLS would probably get better after the tumor (2 1/2 kg) has been removed. I doubt it a bit because I work for Dutch RLS patients and have never ever read about it. Can you tell me if there is a relation between the severity of RLS and Meigs syndrome?

Corrie A.

Medical Reply

There is really nothing known about Meigs syndrome and RLS so it is anyone’s guess as to what will happen after your ovarian tumor is removed. My guess is that little or nothing will change.

Sent: Thursday, January 08, 2015 2:55 PM
Subject: RLS or ?

I have MS but my spasms/cramps are not like MS spasms which I also have now and again. I do not have creepy crawly feelings and I do not have to walk except that I know the cramps will continue until I walk so I have to walk if I want to get rid of the spasms and since they get worse and worse and eventually start to hurt I always end up walking. I have had this for 7 years and I do not sleep more that 1.5 hours at a time and max 5 hours and sometimes I don’t sleep at all.

The way my cramps start is with with a certain subtle feeling that brings my attention to one of my legs. I now know this will always result in full on cramps if I don’t start waking (stretching etc does not work). They also will start if I get an itch on the leg, mosquito bite etc or other prick. Fist the toe will lift a little then about 6 sec later all the toes, then 6 se later the calf muscle will cramp ( and release after 2-3 sec) then 6 sec later the whole leg and the trunk will spasms slightly along with the bladder and if I am peeing both legs will often alternate cramping and releasing at 6 sec intervals.

in 2007 I discovered I had iron deficiency, ferritin was 6. It took several years to get it back up and now it is 80. While the ferritin was in the teens I had spasms during the day. Now they start in the afternoon, but often I go for a walk when I get the “feeling” and will not experience the cramping. The nights were ok the first 3 years when I smoked marijuana and I would only have to get up a couple of times to walk. Now the marijuana actually make the cramping worse.

Valium works except if I take if for a week it stops working so I only take it when I go on a plane. Hydrocodone works sometimes. Oxycodone does not work, I suspect it could be the filler or something. I would love to try Methadone but my neurologist will not prescribe that.

My neurologist thinks I have something in-between MS spasms and RLS. I have tried ropinirole, Mirapex, (both made me feel like crap and was unpleasantly mind altering while not removing the cramps at all). Baclofen and Zanaflex did not work. Horizant does not remove the cramps either. Lunesta and Ambien worked for a little while, not removing the spasms but gave me a 1.5 to 2 hours of sleep. Also no sleep results in more cramps the following day and earlier in the day. I got a generic Lunesta that did work at all and have just picked up another generic, hopefully better. I have been off of the sleeping pills for 2 months so hopefully they work again.

As others have noted the way I sit makes a difference. In the evening if I sit I have to sit with a straight back leaning slightly forward like at a desk. If I sit in a couch spasms will start immediately. If I read I get spasms, if I concentrate I can hold them off some. Ingesting some foods like dairy, rice and tomatoes and any toxins will start spasms.

The right shoulder will sometimes have an unpleasant “feeling” while one of the legs cramps but only if I have been sitting, now while lying.

Could RLS present itself like the above? Before MS I was very physically active and have had many back and neck injuries none requiring hospitalization, but I wonder if some of those injuries could be causing the spasms?

Do you have any ideas? I thought MS was bad, but that is minor compared to the cramps and sleep deprivation which for sure will shorten my life if it continues like this.

Connie P.

Medical Reply

From your description, it does not sound as if you have RLS but it is difficult to be definitive without talking to you personally (which is well beyond this email service). RLS does not present with a hardened area of muscle like a muscle cramp. RLS gets better (at least a little but often markedly better) with walking or any movement. The urge to move is even more important for the diagnosis of RLS than the leg discomfort (which is the opposite of what you describe).

Most RLS cases (like over 90%) respond at least initially to Mirapex, ropinirole and almost all opioids.

You most likely have muscle cramps that are hard to treat (which is typical of muscle cramps).

Sent: Thursday, January 08, 2015 6:50 PM
Subject: Requip and fatigue

Hello, will the fatigue from Requip eventually go away? Or this a permanent side effect? I can't tolerate the zombie-esque feeling I have during the day. It's actually worse than the fatigue from RLS.

JG

Medical Reply

Typically, if the fatigue/sleepiness persists for more than a month or two, it will likely not go away. There are several other treatments that are not related to dopamine agonist drugs (which also includes Mirapex).

Sent: Saturday, January 10, 2015 7:42 PM
Subject: RLS and Spinocerebellar Ataxia?

I have a rare brain disorder... Spinocerebellar Ataxia. Or that is what they have diagnosed... as they say they really don't know for sure.... anyway... evidently when I achieve REM sleep and/or the Carbidopa Levodopa I take wears off, I begin to kick my feet and legs and have RLS.

Anyway, this is making the skin on my feet tender and hurts. Socks and lotion applications are not working that well. What do you recommend?

Sylvia W.

Medical Reply

Spinocerebellar Ataxia has been associated with RLS. There is no treatment for this genetic disorder but there are treatments for some of the symptoms. Sinemet (carbidopa/levodopa) may help the tremors and for the stiffness, spasticity, rigidity and dystonia. However, the Sinemet may worsen your RLS after initially helping this problem. Other medications such as gabapentin, Horizant, Lyrica or Mirapex/Requip may be better choices. One non-medication treatment is the Relaxis vibration pad which may help decrease or avoid the need for medication.

Sent: Monday, January 12, 2015 3:25 PM
Subject: Shin Pains

I have a question for you - I recently had surgery at City of Hope to remove a GIST tumor in my abdomen. I am on the cusp of being at an intermediate risk or high risk for this cancer to come back some other area.

The day/night after surgery I was in deep pain at my shins and tops of my feet. It was unbelievable and in fact, one of the nurses stayed with me most of the night rubbing pain relief on my shins. I have come to the conclusion that it was like muscle spasms on my shins. I remember from the support group meetings that we were to let an anesthesiologist know if we were having surgery that we had RLS.

Do you know or have you heard of anyone getting this issue due to the anesthetic and if not, do you have any idea what it is?

It has been a month since my surgery and once in a while I still get those pains.

Gwen H.

Medical Reply

Typically, if there is an anesthesia problem with surgery, the worsened RLS occurs immediately after surgery when the patient wakes up. It is typically quite short-lived and dissipates when the drug used (that worsens RLS) wears off (which is usually quite quickly as the drugs are given by the IV or IM route and do not last very long).

I have not heard of your specific problem but from what you describe, they do not sound like RLS.

Sent: Tuesday, January 13, 2015 12:21 AM
Subject: RE: Restless legs, Ropinirole and Sinemet

As taking two tramadol was not effective, I saw my doctor with the suggestion of being prescribed hydrocodone at times of enforced inactivity. Unfortunately hydrocodone is not available at all in New Zealand. There is a central drug buying agency, Pharmac, which makes the decision on what drugs are to be sold here. The plus side is that prescriptions for approved and funded drugs are very cheap.

I looked on Pharmac's website and noticed that of your list on Table 9.8--Opioid Drugs in Clinical Management, Levorphanol, Meperidine, Pentazocine and Propoxyphene are also not available. I don't know if they would be appropriate for times of enforced inactivity such as car rides, long movies etc anyway. The other drugs on the table seem to be available as well as dihydrocodeine but I don't know if that would be appropriate.

For night relief I now take 1.5 of .25mg ropinirole two hours before bed, one Tramadol on my first waking and another on my second. They usually help, at least at the moment and I don't seem to be getting augmentation except in unusual circumstances.

Clare S.
New Zealand

Medical Reply

Codeine and dihydrocodeine do help RLS (although not as well as hydrocodone) and should be helpful for short sedentary activities.

Since your choice of drugs is quite limited, it is obviously quite reasonable to stay on Requip. However, you should try to keep the dose as low as possible. Adding gabapentin or Lyrica may be another helpful choice if needed.

Sent: Tuesday, January 13, 2015 1:55 AM
Subject: Edema treatments

I have suffered with RLS for over 20 years and generally have it controlled to what I would consider to be a 90% success rate. Furthermore, when I was prescribed Ultram for my arthritic knees, the RLS symptoms went away even further.

But yesterday, as part of my treatments for edema in the lower extremities, I had an hour session using a device from Tactile Medical called the Flexitouch. This is basically massage therapy only much more aggressive than the standard treatments given by my PT.

And last night was literally back to square one with my RLS. Absolutely out of control. I know all the triggers like caffeine and alcohol and the only new variable was the therapy. Have you seen anything similar, and if so, how do you recommend treating RLS and edema concurrently?

Dave R.
Lexington, KY

Medical Reply

Your worsening with the Flexitouch is puzzling since other intermittent pneumatic compression devices have actually been studied for treating RLS with some reports of successful results (although a few studies had more neutral experiences). However, as with every treatment, some patients may experience negative outcomes even with treatments that help most RLS patients.

Sent: Tuesday, January 13, 2015 12:20 PM
Subject: RE: RLS question

Do you have any recommendations / advice on HORIZANT for moderate to severe RLS?

Mike C.

Medical Reply

Horizant works well for moderate to severe RLS. However, I cannot say that it will definitely work better than your current gabapentin 1200 mg. That is because the absorption of gabapentin is quite variable so that some patients may do about the same whereas others will achieve much better results with Horizant (which turns into gabapentin but delivers the drug much more efficiently and predictably). The only way to tell is to try Horizant in place of your gabapentin.

Sent: Friday, January 16, 2015 4:47 PM
Subject: Does my husband have RLS?

My husband is a mess. He has sort of like electric shocks going through his legs and aches that he cant seem to describe. Its worse at night and he cant sleep. This came on after he stopped drinking alcohol and lost over 40 lbs. His family doctor at first thought it was an electrolyte imbalance and gave him a list of vitamins to take. Per blood work, his potassium was low.

After 2 months of taking them it did not help. His second blood test showed all his levels are normal. He just went for a nerve condition test and a pressure test all normal. The doctor gave him gabapentin 100 mg to take at night he's been taking it for a week but he still has these weird feelings and is very depressed about it. Before this all started he took 3 tramadol 50 mg a day for about a month for back pain from a herniated disc. Then he stopped it and the feelings an sleepless began. He needs help as has really a mess. Could the tramadol have caused this?

Anita

Medical Reply

It is quite possible that your husband does have RLS.

Gabapentin may help but most patients need much higher doses. Horizant is a better way to get gabapentin into the body (and it is approved by the FDA for treating RLS) as regular gabapentin most often does not get very well absorbed into the body.

The tramadol was likely treating his RLS symptoms and stopping the drug merely brought back the uncontrolled RLS symptoms.

Your husband would likely benefit greatly from seeing a doctor who specializes in treating disorders like RLS (neurologist or sleep specialist).

Sent: Saturday, January 24, 2015 12:28 PM
Subject: Some Lyrica (pregabalin) questions?

I have been on 75mg of Lyrica (Pregabalin) once daily (At night) for 6 months and it has worked very decent, took a while to work but since then it has been pretty effective.

Over the last few days though, my legs have been getting worse and worse, and some rough nights. Despite this I have still managed okay during the day, but at night its problematic. With each day I feel it is getting worse, and moving closer to what it was like before I started Lyrica

What should I do now? Up the dose and if so what to? How long would it take for this increased dose to take effect (days/weeks/months) ?

Cahir M.

Medical Reply

Most patients respond to a given dose of Lyrica fully within a few days so it is not clear why it took you so long to get relief from the drug. You can discuss with your doctor increasing the dose (I usually increase the daily dose by 75 mg every week if needed) on a weekly basis until you achieve adequate relief. Some recent studies demonstrated excellent relief of RLS symptoms but they used Lyrica at 300 mg once daily in the evening.

A Reply from Cahir

Sent: Sunday, January 25, 2015 6:38 AM
Subject: RE: Some Lyrica (pregabalin) questions?

Also, is there any chance of developing an addiction/dependence on sleep medication, if only taking it every other night?

I think I'm going to try trazodone. A lot of people say its not addictive, then others say you can develop an addiction.

Cahir M.

Medical Reply

Most sleep medications (like the benzodiazepines, Xanax, Ativan, Halcion, Restoril, etc.) can easily cause physical dependence/tolerance and addiction. Using them every other night markedly (likely completely) reduces this risk. However, they are all psychologically addictive meaning that once you experience their benefits, you may find it difficult to fall asleep without them.

Trazodone does not result in true addiction (withdrawal symptoms when stopped) but tolerance often develops (but not dependence except as noted above, psychological dependence). Next day sedation is also quite common due to its long half-life.

A Reply from Cahir

Sent: Monday, January 26, 2015 3:00 AM
Subject: RE: Some Lyrica (pregabalin) questions?

When is the best time to take the Lyrica in the day?

Since July I have taken the 75mg once daily, and always right before I go to bed at night.

Cahir M.

Medical Reply

Lyrica usually takes 1-3 hours to kick in so we recommend taking it 1-3 hours before your typical RLS symptoms tend to be active. It also helps sleep, so taking it 1-3 hours before bedtime (which for many patients is when the RLS symptoms are at their worst) is quite common. However, every patient is different and it does take some trial and error to figure out the best timing for your personal RLS problem.

A Reply from Cahir

Sent: Monday, January 26, 2015 9:41 AM
Subject: RE: Some Lyrica (pregabalin) questions?

My symptoms are 24/7 and were even before I started any medication. For 6 months 75mg once daily before bed worked great for me, but as I said its starting to wear off, my nights are certainly far tougher, although I can manage okay during the day.

I would love to use Lyrica for the foreseeable future, so I'm really hopeful that an upping of the dose will work and I am slightly worried that it may have ran its course for me and may no longer be effective at any dose.

How long can a patient expect to get out of Lyrica? Do people go past 5 or 10 years in any cases?

Medical Reply

Most patients tend to find that treatment with Lyrica is quite durable such that once they achieve relief, that relief is sustained. It is also not very common for patients to have to increase their dose of Lyrica once they find the correct level (unless something new happens like starting a drug that worsens RLS).

Lyrica was first available in the USA in 2004 (when the FDA approved it to treat neuropathic pain) so I do have some experience with it. There are no long term studies (most just go to one year) but the majority of patients do not experience your issues with wearing off of Lyrica’s relief of RLS symptoms. The more recent studies have used Lyrica at 300 mg (starting and only dose).

Sent: Monday, January 26, 2015 8:19 PM
Subject: RLS

I take 1mg Requip every night. It works for my RLS most of the time. But I can no longer afford the Requip. I also take a pain pill at night. As I have a lot of pain from extensive back surgery and shoulder replacement as a result of a serious car accident. I want to change my Hydrocodone 10/325mg and Requip 1 mg to Methadone and Neurontin as I can get both of these meds for free.

I am not sure what dosage to take with either one. I appreciate any advice you can give me.

Stephanie D.

Medical Reply

Requip comes in a generic version which should be quite inexpensive.

Methadone is about 30-50% more potent than hydrocodone so most people would need about 5-7.5 mg to replace 10 mg of hydrocodone. However, each drug may have different side effects and methadone last a lot longer (8-10 hours compared to 4-6 hours for hydrocodone) so a simple replacement may not work as expected. It would be very helpful to have a doctor who is experienced in using all these drugs.

The other issue is that when you stop Requip, your RLS will get markedly worse and you will require much more opioids for relief. Neurontin (gabapentin) may help but not until you are off the Requip for a couple of months. It is usually started at doses between 1-300 mg then increased as needed. However, as discussed above, your doctor who manages these drugs should have lots of experience with them and RLS or it is unlikely that you will be able to achieve control of your RLS symptoms with making your proposed changes (which may not be necessary since Requip may be cheap as a generic).

Sent: Tuesday, January 27, 2015 4:21 PM
Subject: Neupro

Evidently, people with heart failure and arrhythmia should be careful with Neupro. (about .10 % to 1.00%) I may be one. Before Christmas I was taken to the ER of the local hospital, having
had an experience of dizziness and severe dyspnea. For the previous month, I had been taking 2 mg of Neupro with a view to getting off the augmented .5 mg of pramipexole. which I had continued to take. I was diagnosed with ventricular tachycardia and had an ICD (implantable cardioverter defibrillator) implanted.

At my first visit after this event, the RLS specialist, because of no real improvement in symptoms, decided to increase the Neupro to 4 mg even though the highest dose is supposed to be 3 mg and to continue the .50 mg of pram. About 10 days later, I was awakened with severe dyspnea. The ICD recorded a heartbeat of 240 at that time. Also, I have had more minor bouts of dyspnea since starting 4 mg, a dose which also make me feel spacey. My cardiologist can't be sure whether or not the dopamine is causing this but feels it is a possibility.

The 4 mg of Neupro and .5 mg of pramipexole seems a bit much to me. All this is a bit troubling to me, so I decided to reduce the Neupro to 2 mg. and the pram to .25 mg. Getting the pram to .25 mg has had its challenges but I am managing. The transition from pram to Neupro has not gone smoothly. My ultimate goal is to get off the pram. Hopefully then I can manage my RLS with 2 mg of Neupro and maybe Lyrica which can help with the insomnia which robs me of my sleep as much as RLS.

I feel as if am flying solo, so any advice you can give would be appreciated.

Larry O.

Medical Reply

Once augmentation occurs, most RLS specialists would try to eliminate the pramipexole. Changing to a long acting dopamine agonist like Neupro is one reasonable approach but since you already needed a higher than approved dose (at 4 mg and had cardiac side effects) and still needed pramipexole at a high dose of .5 mg, that approach is very unlikely to be successful.

The commonest method of treating augmentation with pramipexole is to get off the drug (and possibly even off the Neupro). Most of us recommend using a potent opioid (like methadone or oxycodone) to make this transition almost painless (otherwise, this experience can be quite painful and troublesome). The RLS will typically calm down within a few weeks to a few months off the dopamine drugs. Lyrica or Horizant can then be added to reduce or eliminate the opioids and to help sleep.

However, the above treatment is fairly complex and needs a real RLS doctor with a lot of experience with the drugs and process.

Sent: Thursday, January 29, 2015 12:38 PM
Subject: Help for husband!!!

My 65 year old husband (very healthy; only takes Lipitor) has had very severe RLS for as long as he can remember. In school, he was labeled as hyper but later found that to be from RLS. His mother had it and one older brother has it.

He was diagnosed about 20 years ago when his lack of sleep became so severe that it effected his life. He has been on various medications, which helped a lot, as each medication was in or out of favor. He's now on 6 mg of Requip, with a 12 XL every other day if needed during the day.

He has now been diagnosed with severe sleep apnea and is being treated with a CPAP, which is helping quite a bit and he is sleeping better, and not sleep deprived. However, in looking at his overall health, his sleep specialist suspects augmentation from his Requip and wants him to get off of it and on Klonopin. So, for the last several days, he has tried 1 mg of Klonopin with 4 mg of Requip, with the goal of eliminating Requip. The result is disastrous-- his RLS is relentless (he tried 1.5 mg of Klonopin with 4 mg Requip last night, as instructed) and even though he's drugged and sleepy, he can't sleep because of leg jerking and pain. After three 1/2 days of this, the Klonopin is clearly not working, and he went back to his 6 mg of Requip in the early hours of this morning.

His doctor is out of town until Monday (today is Thursday). She will not be happy with our decision to abandon the effort, but he was suffering, miserable, and couldn't sleep--let alone able to go to work or do anything. This has been a horrible few days for him; he truly tried but is desperate!

Nx

Medical Reply

Given your husband's dose of Requip, it is very likely that he is suffering from augmentation. However, there are very few doctors (even most sleep specialists and neurologists who commonly handle RLS patients) who are experienced enough and knowledgeable on how to treat severe augmentation cases.

In cases such as your husband, trying to reduce or eliminate the Requip with Klonopin is virtually guaranteed to fail and cause the misery that your husband has already experienced. Klonopin does not actually treat RLS but rather just helps RLS patients get to sleep (as it would also do for patients with back pain, headaches, etc.). Furthermore, Klonopin has a greater than 40 hour half-life which means that it accumulates quickly when taken every night. Shorter acting sedatives are preferred when deemed necessary (possibly as adjunct therapy added to the main augmentation/RLS treatment).

In the meantime, I would suggest that your husband see a real RLS expert who is experienced with the successful treatment of severe RLS patients.

Sent: Friday, January 30, 2015 8:19 PM
Subject: Is there any hope?

I'm a 31 year old male. I have neuropathy in my hands and feet. I think it is a combination of large and small fiber, because I had a Nerve Conduction Test done on the leg that I have RLS in and it turned up abnormal. My RLS just hit, pretty much out of nowhere, sometime last year and it is 24/7. It doesn't really seem to be any worse at any particular time of day which seems inconsistent with most other folks with RLS. I've tried gabapentin and Lyrica thus far and neither have worked. The only thing that has alleviated the RLS so far is clonazepam.

I'm afraid of trying the dopamine type drugs since they typically cause augmentation and I already have symptoms 24/7. I'm kind of at my wits end here and I'm not sure what to try or do. Any help or advice would be greatly appreciated. I've seen two separate neurologists so far but to no avail. I have an appointment with a neuropathy specialist in April.

Emil B.

Medical Reply

There is definitely hope. With proper care, most RLS patients even severe ones should get adequate relief from their RLS symptoms to live normal lives. It is fairly common to have neuropathy associated with RLS such as in your case.

Gabapentin is a reasonable drug for RLS but does not always get absorbed very well. Lyrica has been demonstrated to be a very effective RLS drug in many patients but may need a dose as high as 300 mg.

Your concerns about dopamine agonists (especially short-acting ones) is quite reasonable. However, you might want to discuss the long-acting dopamine agonists like Neupro with your doctors.

The last class of medication to consider and discuss with your doctors is the opioids. They can be very effective and safe if used appropriately and monitored by a physician experienced with prescribing them. Unfortunately, most doctors (including specialists like neurologists or sleep specialists) do not know how to treat very difficult RLS cases and are most often not comfortable using opioids. You may have to search for an RLS specialist who has the expertise to treat your case.

Additional measures include iron therapy especially if your serum ferritin is less than 50-75 and the Relaxis vibration pad may help reduce your RLS symptoms significantly.

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

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 109.
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