Patient letters on RLS symptoms and remedies- Page 118

Kicking RLS/PLMD Patient

Sent: Wednesday, January 3, 2018 7:02 PM
Subject: Re: Mirapex to gabapentin to Lyrica

Looking for advice...again :) Do you ever do a combination of gabapentin and Lyrica or other medications together? Spouse continues to suffer. Went up to 5 300mg capsules of gabapentin and then stopped that and now has been taking Lyrica , now up to five 50 mg capsules to little effect. Running out of ideas and sanity.

Sheryl C.

A Medical Reply

I would not recommend taking gabapentin and Lyrica together since they act on the same receptors. It would be better to just take a higher dose of Lyrica. However, it does not seem that Lyrica is working for you.

The next choice would be adding (or substituting) an opioid which almost always does the trick and if given correctly, is very safe. However, most doctors do not like prescribing opioids for RLS (especially with the opioid epidemic that is presently a real concern).

A Reply from Sheryl

Sent: Wednesday, January 3, 2018 9:46 PM
Subject: Re: Mirapex to gabapentin to Lyrica

Yes, that seems to not be an option as we are trying to avoid the compulsive/addictive behaviors the dopamine drug helped facilitate.

Sheryl C.

A Medical Reply

I suspect that you misunderstood my reply.

Opioids do not cause compulsive or addictive behaviors (unless you are already an opioid addict). We experts prescribe opioids for patients like you all the time with excellent results.

Attached is an article that just got published that several of us experts wrote to address the concerns about prescribing opioids for RLS patients.

Sent: Monday, January 29, 2018 1:36 AM
Subject: My RLS and neuropathy

I am a retired United Kingdom family doctor aged 66, with a family history of restless leg syndrome in mother and sister but mine appears to be worse than others. I noticed it once or twice as a child but always slept well. It started again around my mid 40’s but I have had it severely for around 15 years now.

I developed peripheral neuropathy around 11 years ago. It is a Chronic Inflammatory Demyelinating Polyneuropathy, caused either by a Monoclonal Gammopathy of Uncertain Significance paraprotein or possibly secondary to Shingles I had around 3 months before it started. I had an Amyloid test and it was negative.

I discovered by chance that Pregabalin helped my RLS when I took 50 mg at night for the neuropathy burning feeling. It was like a miracle at first. That burning is now gone and now I have mainly just numb legs and hands. I never took more than 150 mg. The effect wore off and I also suspect in the end made my RLS worse. It also resulted in weight gain, worse balance and made me feel wobbly and shaky which I think was due to hypoglycaemia ( not Diabetic ) and made me feel like I would fall. I gradually withdrew from it which was hard as this made the restlessness worse but now it is the same on or off the Pregabalin.

I am frightened to take a dopamine agonist due to augmentation. In fact I am frightened of most drugs really now!
I wake with RLS every night at least 3 times, never free night for many years and sometimes every hour. I am often exhausted and definitely sleep deprived. I don’t think I have PLMD. Sometimes it is only my left leg which is more numb than the right one, but usually both and especially in the evening can affect shoulders and upper back and upper arms.

I have discovered how mental stimulation, puzzles playing piano and knitting helps flick what I call the off switch, also hot baths, not reading though and if I have RLS symptoms I can’t concentrate to read. Right now I take 30 mg codeine once at night with paracetamol once I feel the RLS starting. I am frightened to take more due to the addiction potential. I think it takes the edge of the RLS. My Ferritin has been 40-60 and I’m trying to get it higher taking Ferrous Bisglycinate. All other bloods are normal.

I have tried Magnesium for a short while, also high dose Vitamin D as my level was at the lower limit of normal at the end of the summer. I do think sugar makes it worse and try to be disciplined but when exhausted I have a bad habit of grabbing biscuits I’m afraid, daft I know!

Do you have any ideas which might help me?

The Hematologist who looks after the Paraprotein once offered me a trial of Plasmapheresis to see if that would help the RLS but it is a big deal to consider and of course the RLS may just be familial and nothing to do with the paraprotein. He didn’t know if it would help or not.

I have wondered about the newer anti epileptics e.g. Topiramate but again am scared of the side effects and they might cause augmentation in the end?

Alison M.

A Medical Reply

There are several issues regarding your RLS treatment.

Lyrica (pregabalin) is an excellent RLS drug especially at higher doses (up to 300 mg). However, the side effects (which include sedation and dizziness) often preclude its use. The wobbliness and shaking are typical side effects caused by the CNS depressant effects of the drug (nothing to do with hypoglycemia). As such, gabapentin might help your RLS but does have similar side effects (although this varies considerably from patient to patient). However, gabapentin is often not that absorbed at higher doses (which is also quite variable).

I agree with your concerns about the dopamine agonist drugs. However, the Neupro patch at lower doses (1-3 mg) tends to be much safer with a lower incidence of augmentation. It may be worth trying.

I would not recommend the codeine with paracetamol (Tylenol) as the paracetamol does not help RLS and thus may cause side effects over time without any corresponding benefit. You could go higher (60 mg or a little more) of pure codeine with little risk of tolerance or dependence. We usually use oxycodone or methadone which of course is much more difficult to obtain in the UK (attached is a copy of our recent article on the use of opioids for treating RLS).

It is very difficult to achieve therapeutic iron levels (for improving RLS) with oral iron. Typically, an iron infusion with INFeD or Injectafer is necessary to get iron levels high enough to impact RLS symptoms.

Your current medications typically have no impact on RLS and plasmapheresis should have no benefit for RLS.

Other epileptic drugs (other than Lyrica and gabapentin) have little or no benefit for treating RLS. Only the dopamine drugs and tramadol may cause augmentation. All the other treatments (including opioids) do not cause augmentation.

Sent: Saturday, February 3, 2018 11:14 AM
Subject: Methadone

I have written to you several times about my 86 year-old husband who developed a severe case of RLS after a shoulder replacement about 6 years ago. He had rapid leg movement syndrome for years, but after the operation, RLS came front and center and debilitating. He has seen several specialists even at Mayo Clinic, but I have to say your advice and recommendations have always been the most helpful and informative.

So first of all, thank you for your time in helping all your correspondents. My husband has gone through the gamut of medications with no good results (augmentation mainly). He took oxycodone (about 17.5 mg per day) but that became ineffective after a couple of years…and a need to increase his dosage. Actually, it was not always that helpful and he could never count on it helping.

You have said that methadone is one of the most effective treatments, and I am here to attest to that to you and your readers. It has been a miracle! He is now taking 2.5 mg three times a day (total of 7.5 mg) and he is now able to go to a movie, sit on a plane and lie down at night to sleep...all things he hasn’t been able to do for five or six years. And with absolutely no side effects. It has only been about 3 months so we are still keeping our fingers crossed. Yes, he has some attacks around 3 a.m. but nothing like before, and it passes and he goes back to sleep. We no longer dread the nights . His doctor has been supportive but mainly because I have been insistent after having read all your advice and recommendations over these past five years that he allow my husband to try methadone.

Iif methadone works so well from the get-go, does it tend to remain so without needing to increase the dosage? And if we do need to increase the dosage, at what dosage is it getting to be high?

I just want to thank you for all those RLS sufferers out there. I know that reading your questions/answers part of this site has changed my husband’s life (and mine!) I just don’t know why we waited so long before insisting on trying methadone.

Lucy G.

A Medical Reply

It is not entirely clear why methadone works much better (for the majority but clearly not all RLS patients) than other opioids (although we do have some ideas) but it often is the best choice due to its effectiveness and fewer side effects (and longer acting than many).

Most patients have little or no escalation of their dose for a decade or more and even then, only a small increase (such as another 2.5 mg in your husband’s case) so your husband will likely do fine even once he get into the 100’s (and by then, we may have even better treatments). Therefore, I would not be too concerned about your husband exceeding an acceptable dose range of methadone (we start to get concerned with doses above 15-20 mg).

Attached is an article about the use of opioids for treating RLS that several of us experts just published. Your doctor may feel even more comfortable after reading this article that discusses the use of opioids for treating RLS and gives guidelines on how to do it.

Sent: Monday, February 12, 2018 3:04 PM
Subject: RLS advise

Hello there, I'm Melanie Sedgwick emailing from London UK. I just happened to stumble on your website.

I've been dealing with RLS for a little over 7 years. It started during my pregnancy and never went.

Whenever I come across a blog, or message tread about RLS I like to share what I do that has made it bearable.

My legs tingle at night when in bed. The feeling of the mattress on my legs was horrible, like prickly electric bolts going up my legs. The way I have coped is by doing this.

I lay on my stomach and dangle my lower legs off the bed, my feet and lower legs are dangling in mid air, not touching anything including the floor.

The sensation of the electric bolts is still there, however they now feel like they are traveling down my legs and out of my feet. My legs do the jerks and little kicks as normal, but there is a real sense of relief with my lower legs not touching anything. The feeling gradually subsides and in about 20 minutes, the feeling has gone and I can put my legs back into bed.

I usually just have to do this once a night. This is how I've coped with it for all these years, it's lovely after just 20 minutes of cope-able discomfort to feel the restlessness leave my legs so I can sleep, and I thought I'd pass it on.

Melanie S.

A Medical Reply

Thanks for you letter. We will post it on our website.

You should discuss starting gabapentin (or even better, Lyrica) with your doctor to treat your RLS so that you do not have to cope with your symptoms.

Sent: Monday, February 12, 2018 12:12 PM
Subject: Help for Restless Legs Syndrome

I have had restless legs as a child but they stopped. I have had insomnia since child- I have also suffered from post traumatic stress disorder and Restless Legs really started full on when I started taking sleeping tablet Imovane while already on amitriptyline x 2 - 250 mg and placil x 2 - 250 mg and now on 3 Sifrol per night .25 mg and have had to stop one placil but now Sifrol not working so take two valium and 1 tramadol just to stop legs-

I have just added codeine one mane and have just found this site and I believe it will save my life and sanity. I have learned about Augmenting and my doctor has started my gradual withdrawal from Amitriptyline and have decreased to 2 at night and then she plans to gradually decrease the Sifrol. I hope we are on the correct plan and any advice you could give me would be greatly appreciated.

Jan T.

A Medical Reply

The Imovane should not worsen RLS but the Pacil (Clomipramine) and amitriptyline both typically markedly worsen RLS. Valium has a very long half-life and is not recommended for use for RLS or for insomnia. Imovane or Ambien would be a better choice for treating the insomnia associated with RLS (but none of these sleeping pills help RLS symptoms except for getting the patient to sleep).

The augmentation will improve once you get off the pramipexole (Sifrol). However, it takes about 10 days or so before the RLS improves and the RLS will get dramatically worse during those 10 days. Tramadol and even codeine may not be sufficiently potent to take care of those enhanced symptoms and you may not get any sleep. Stronger opioids like oxycodone are suggested but that may be difficult to get in Australia. After 10 days, lower doses of opioids (or even less potent opioids) typically work very well to control the RLS symptoms.

Sent: Wednesday, February 14, 2018 4:44 AM
Subject: RLS

Hi have been taking Requip for years and up until recently it has worked wonders for me. I am taking 4mg at bedtime. My doctor says that's the maximum dose and will not increase it. I have also tried Mirapex in the past with no relief.

Any suggestions?

Erin C.

A Medical Reply

What you are experiencing is called augmentation which is a worsening of RLS from taking a dopamine drug like Requip or Mirapex. The drug at first markedly helps the RLS but with time, the RLS worsens and more and more of the drug is necessary to treat this worsening symptoms. Taking a higher dose will help for a while but it will just add fuel to the fire of augmentation and your RLS symptoms will get increasingly more difficult to control.

There are several treatment strategies for augmentation but the best approach is to get off the Requip completely. This of course can be difficult since RLS symptoms will worsen for about 10 days before calming down and becoming easier to treat.

Sent: Saturday, February 17, 2018 2:46 AM
Subject: RLS during pregnancy

I'm trying to find relief for my RLS during pregnancy (3rd trimester). I had RLS pre-pregnancy and was getting relief from Hawthorne Berries, Rutivite, stretching, and exercising. But now that I'm having complications (preterm labor) with my pregnancy.

I'm currently on bed rest and unable to take Hawthorne berries due to its possible uterine contraction effect. I'm also on bed rest and can't pace or move around. I know Benadryl or Unisom worsens RLS. I'm already on prenatal vitamins (with folic acid & iron). I'm planning on starting Magnesium. I'm wondering if you know any other options for my situation?

Jocel M.

A Medical Reply

You should have your iron levels checked to make sure that you do have adequate iron even though you are taking supplements (we like to see the ferritin above 75).

Otherwise, you can discuss taking Sinemet, Klonopin and if they don’t help then oxycodone would be a good choice.

Sent: Thursday, February 22, 2018 6:43 AM
Subject: Re: Treatment after Mirapex

Greetings from Dublin. You very kindly helped me in my struggles with post-augmentation RLS in August/September 2016 when I eventually found relief using 30 mg of OxyContin daily. I am now managing my RLS with 200mg pregabalin in the evening, supplemented by about 3 oz Kratom taken in two doses through the night. I am struggling with the side effects of these drugs.

My serum ferritin is currently about 84. It did get to over 100 on one test about 6 months ago but it reduced again pretty quickly even though I continue to take oral iron. My symptoms do appear to improve when my serum ferritin rises. My GP has agreed to administer IV iron but, although very keen to help me, he does not know a lot about RLS (on his own admission).

You kindly offered, back in 2016, to send me a protocol for IV iron that you use on your patients and my GP was delighted to hear that such guidance might be available. I wonder would you be prepared to do that now? Also my GP wonders whether it is possible to purchase the iron preparation already prepared? I did not know that this was how it worked, assuming (apparently naively) that the preparation would be made up in a laboratory somewhere in accordance with a pre-advised protocol.

Rachel A.

A Medical Reply

It is great (but not very unexpected for me at least) to hear that your RLS is now under control. Even if you were to stay on OxyContin at 30 mg per day indefinitely, that would not be a problem. You can try to decrease the dose by 5 mg increments (either before or after you go to bed) to see if you can lower your dose at all since we still strive to find the lowest possible opioid dose that is effective.

Normally, I have patients take their OxyContin dose a few hours before bedtime so that it has time to kick in at bedtime when symptoms are typically worse and may prevent sleep. The amount and timing of this dose may take some trial and error. It is usually not necessary to take a second dose a few hours after the first dose of OxyContin as it does last at least 8 hours. The trick is to find the correct dose and timing.

Kratom is now considered to be an opioid and care is advised when using this drug especially when combined with prescription opioids like OxyContin. We otherwise do not know that much about Kratom.

Sent: Sunday, March 4, 2018 1:55 PM
Subject: Help with RLS

I am 31 days from stopping 4, 1 mg tablets a day of pramipexole, for about 10 years. I have had RLS since I was a child, but it didn’t become a serious problem until I was about 35 years old. I am now 73 and had a rather terrible time in withdrawal. I didn’t realize what I was in for when I quit, cold turkey, but now that it has eased some I am glad I did. I am now taking 1, 600 mg Horizant, but have started looking for other options since I can’t afford the monthly cost.

I have corresponded with many great RLS sufferers on the “Health Unlocked” Forum, who provided support and encouragement when I was really down, in my withdrawal. Your name came up very often as “The” Authority on RLS treatment with many kind words about your responses to sufferers.

I know there is not a cure for RLS, but I have read about and listened to webinars about your efforts work on Iron Infusion. That truly looks like some light at the end of this dark tunnel to me, and I am sure, many others, too.

My Iron numbers are in the lower end of normal.

Ferritin 200 ng/mL
Iron - Serum 72 mcg/dL
Iron Binding Capacity (TIBC) 376 mcg/dL (calc)
Iron - Saturation 19 % (calc)

I remember a comment that RLS sufferers may have low Brain Iron levels, despite, the normal, conventional iron numbers. How would you check the level of iron in the Brain, a spinal tap, for spinal fluid?

I had colon cancer in 2013 and had 2.5 feet of my ascending colon removed with the tumor and 14 lymph nodes. I had 6 months of chemo, and in the process ended up having several infusions. I had iron due to anemia and on another occasion 3L of saline due to dehydration. I am 5 years into the recovery with no problems. I feel like the Oncologist that I had would do an Iron Infusion, but do not know if your work would require a different Iron than what he might normally give.
Would this be an option, given my numbers above? And would you consider giving the the iron formula that your work found, gives best results?

Bill D.

A Medical Reply

If the Horizant is working well, there are pharmacies that can help you get the drug much cheaper. You can call my office (562-904-1101) and my staff can give you the information. Otherwise, you could try a change to generic gabapentin (very cheap) and take 300 mg as an earlier dose then another 300 mg as a later dose. These doses may be increased or decreased as needed.

There are other treatment approaches but staying with the above alpha-2-delta drugs is the best first plan.

Your iron/ferritin numbers would likely not qualify you for an iron infusion (as far as insurances are concerned to cover this treatment). You still might benefit from an iron infusion (as the iron in the brain is more important than the iron in the blood and they are not always completely related to each other). Attached is a recent article that details iron therapy for RLS (including infusions) that may help answer more questions and guide your doctor.

Sent: Saturday, March 10, 2018 5:28 PM
Subject: RLS

Is there any known link between obstructive sleep apnea and RLS?
I have started on CPAP treatment for sleep apnea recently with no improvement in my RLS. However many RLS sufferers report an improvement of RLS when using CPAP so I am interested in your opinion

Kim W.

A Medical Reply

Any condition that causes increased sleepiness tends to worsen RLS. Therefore, if someone has significant sleep apnea (moderate to severe), then there is a good chance that treating the apnea may easily result in improvement of the RLS. As with everything, your mileage may vary but the more severe the apnea, the better chance that CPAP therapy should help the RLS.

Sent: Monday, March 12, 2018 2:31 PM
Subject: HELP-Sleepless in New Orleans (sort of)

I have a son who is 2 and a 1/2 years old. Since he was around 8 months old, he's had three bouts of night awakenings whereupon he is awake for at least two or more hours in his crib-tossing, turning, kicking. He will cry out occasionally during these bouts, but he mostly just rolls around and kicks. These bouts usually end after a few weeks and then he'll sleep like a champ for months. We follow a pretty consistent routine, he is a good self-soother, and when he does have these night awakenings-they don't seem to happen at the same time every night. He does, though, take a while to fall asleep which I've heard from SO many people that their toddlers also take a long time to fall asleep at night.

I am not at the point where I feel as though we need to rule out an underlying medical condition. I go back and forth between thinking that this is RLS or that it could be just typical toddler behavior. We truly have nobody in this area who seems to know anything about RLS in children including his own pediatrician. I would also like to mention that I have RLS, but have not struggled with it my whole life. The onset of my RLS was during my first pregnancy. I do continue to have it occasionally, but it's been pretty mild up until this point (thank goodness).

I am just at a loss. I hate reading about RLS in children on the internet because it's so doomsday and or everything is so vague with regard to symptoms or any sort of pattern that it follows in young children. I also want to state that we have had his adenoids removed, we have had a metabolic panel run to rule out other medical issues that could be causing the night awakenings. I had his ferritin tested in August and then again last week after giving him liquid iron supplements since September. That went from an 18 to a 19, so not much of a difference. I also have video that I've recorded of him on the monitor during these awakenings. I'm happy to provide you with images of the results from the blood work and with video of him at night.

In finality, I do wonder if these awakenings (just for him personally) are happening around growth spurts or developmental leaps since they've happened at 8 months, 22 months, and now 2 1/2 years. He is active and full of energy, so this could just be something that he does in phases. The internet is a scary place because it does make you think the worst, and the information obviously is very general rather than child specific.

Zia B.

A Medical Reply

It is very difficult to diagnose RLS under age 3 (age 3 or 4 is the youngest that I have been able to diagnose). Getting the ferritin level as high as possible is the best start and all that I would consider doing for now. If he does have RLS, that could be quite helpful.

When he is older, there are other treatments (if necessary) that could be helpful and well tolerated. I would wait until he is older before you get too concerned or obsessed with a possible diagnose of RLS.

Sent: Wednesday, March 14, 2018 9:41 PM
Subject: Severe Refractory RLS

I augmented on Ropinirole and went through a hellish withdrawal in August 2016. I have been on 10mg OxyContin twice a day, 5mg OxyContin at 2am and 150mg of Pregabalin at night for a year. I added the Pregabalin at your suggestion because I was having panic attacks on OxyContin and very disrupted sleep. I still suffer RLS very single night. Sometimes I manage to defuse it by doing leg exercises with a tension leg band and stretching and yoga but often the exercises do not work.

It seems to me that I should be getting a much better sleep, given the amount of medications I am taking for RLS. I now wonder if I am suffering Augmentation on Pregabalin ( although the RLS is not starting earlier) or tolerance to the drugs. I can honestly say that I have always had disturbed nights from RLS and the drugs have never stopped that. I am not sure what to do next. Should I change my meds or increase the dose? I seem to be one of the few people on the UK help forum who does not get several good night’s sleep a week. I would appreciate your thoughts on this.

Julie G. ( London, UK)

A Medical Reply

It is very hard to give you advice on your more complicated RLS without seeing you as a patient (which of course would be very difficult for you living in the UK).

However, augmentation does not occur on pregabalin (only with dopamine drugs and occasionally tramadol). You might consider going to a higher dose of pregabalin as studies have demonstrated very good results with doses up to 300 mg in the evening. There is some new evidence that RLS might not respond to drugs like pregabalin after RLS patients are treated with dopamine drugs like ropinirole (so that might be part of the problem).

As far as your dose of OxyContin, there is some room for an increase but first, I would try to concentrate the OxyContin later in the day (you can walk or move during the daytime with less effect on your life) so that you provide the maximum benefit at bedtime to get enough sleep. I assume that the 5 mg dose of OxyContin is actually oxycodone as I don't think that there is a slow release dose under 10 mg.

You should also have your iron and ferritin levels checked as if they are low, supplementation may provide additional relief.

Sent: Monday, March 19, 2018 2:55 PM
Subject: oxycodone side effects

I have not been taking 10 mg oxycodone each night for my RLS for several months now. It does take care of my RLS symptoms, (which is a blessing) however, many nights it seems to keep me awake and unable to relax or sleep. Then every now and then, I am able to get several hours of sleep without the restlessness. Unfortunately, even when I am able to get several hours of sleep, I have overwhelming fatigue during the day.
I withdrew from Mirapex last September and October. I have tried both Gabapentin and Lyrica to no avail. Thus the oxycodone.

Do you have any thoughts on why my effectiveness of the oxycodone is so inconsistent and why I am so exhausted during the day regardless? I do believe that the ordeal of withdrawing from Mirapex caused me to become depressed which could be the cause of the fatigue. I am seeing a psychiatrist and a counselor to address the depression.

I also wonder if the long term use of Mirapex (10 years) could have caused the current depression to have developed after stopping the medication?
I appreciate any insight you may have. I have read your recent article on the use of opioids in the treatment of RLS and have provided a copy to my physician.

Mara R.

A Medical Reply

After a few weeks of being off Mirapex, it should be out of your system and not causing any additional problems such as depression.

The more common side effect of opioids is sleepiness but a smaller group of patients do experience insomnia. However, this can vary amongst the different opioids so it may be worthwhile discussing a change to other opioids (such as methadone, morphine, etc.) which may not share the insomnia side effect.

The fatigue may be due simply to insomnia and possibly depression. Resolving those issues may possibly resolve the fatigue issue. Remember that almost all the antidepressant medication make RLS worse.

Sent: Monday, January 29, 2018 1:36 AM
Subject: My RLS and neuropathy

I appreciate how busy you are so thank you for taking the time to read this and give advice if you are able.
I am a retired United Kingdom family doctor aged 66, with a family history of restless leg syndrome in mother and sister but mine appears to be worse than others. I noticed it once or twice as a child but always slept well.

It started again around my mid 40’s but I have had it severely for around 15 years now.
I developed peripheral neuropathy around 11 years ago. It is a Chronic Inflammatory Demyelinating Polyneuropathy, caused either by a Monoclonal Gammopathy of Uncertain Significance paraprotein or possibly secondary to Shingles I had around 3 months before it started. I had an Amyloid test and it was negative.

I am frightened to take a dopamine agonist due to augmentation. In fact I am frightened of most drugs really now! I wake with RLS every night at least 3 times, never free night for many years and sometimes every hour. I am often exhausted and definitely sleep deprived. I don’t think I have PLMD. Sometimes it is only my left leg which is more numb than the right one, but usually both and especially in the evening can affect shoulders and upper back and upper arms.

I have discovered how mental stimulation, puzzles playing piano and knitting helps flick what I call the off switch, also hot baths, not reading though and if I have RLS symptoms I can’t concentrate to read.
Right now I take 30 mg codeine once at night with paracetamol once I feel the RLS starting. I am frightened to take more due to the addiction potential. I think it takes the edge of the RLS.

My Ferritin has been 40-60 and I’m trying to get it higher taking Ferrous Bisglycinate. All other bloods are normal. I have tried Magnesium for a short while, also high dose Vitamin D as my level was at the lower limit of normal at the end of the summer.

I do think sugar makes it worse and try to be disciplined but when exhausted I have a bad habit of grabbing biscuits I’m afraid, daft I know! Do you have any ideas which might help me?
I take `Bendroflumethazide, Diltiazem and Perindopril for Hypertension and have for many years. It is only just controlled and I can’t do without them. Missing out the Diltiazem made no difference to my RLS.
The Haematologist who looks after the Paraprotein once offered me a trial of Plasmapheresis to see if that would help the RLS but it is a big deal to consider and of course the RLS may just be familial and nothing to do with the paraprotein. He didn’t know if it would help or not.
I have wondered about the newer anti epileptics e.g. Topiramate but again am scared of the side effects and they might cause augmentation in the end?

Alison M.

A Medical Reply

A Reply from Alison

Sent: Thursday, March 29, 2018 1:02 AM
Subject: Re: RLS improve during viral illness twice - is there a mechanism to investigate

And yes, I've had a febrile illness and the occasion before when the RLS improved it was the same - I had flu that time a few years ago. It would be so great if someone in the research community could look into this situation. I wonder if it is the fever itself, or something in the immune response which causes fever that accounts for it.

Is there a treatment option in there somewhere? i realize it would take some time to unravel and then find something safe which works though. It was absolute bliss for 2 nights. It was pretty good last night too though I am now improving and not so hot. It's worth being ill for!

Does it happen with all fevers or just some or when the fever is at a certain level - any idea?

Alison M.

A Medical Reply

There is not much (if any) research devoted to this phenomenon. It is just based on observations made by RLS specialists caring for patients who noted improvement (or complete relief) while experiencing a fever. How high a temperature needed is not known. It would be really great to understand the mechanism of this effect.

Sent: Saturday, March 31, 2018 4:56 AM
Subject: RLS in foot

I am 74 years old and was diagnosed by a consultant neurologist 2 years ago as having RLS. It is only in one foot and unlike what appears to be the majority of sufferers, I only get the pain in the day

When I was first diagnosed some of my symptoms did match RLS but I have no problem sleeping and have never had involuntary movements. My symptoms which have changed gradually over the 2 years are now mainly in the 2/3/ and sometimes 4th toe which is like a pulsing, tingling sort of feeling. My foot feels as though it is 3 sizes too large for my shoe. My ankle feels stiff and moves up calf, knee and sometime thigh, they also feel stiff but only get the pulsing feeling in my foot. I do experience a lot of cramp. When wlaking it feels as though I am walking on sandpaper so extremely difficult and can only now wear certain shoes.
As I always react badly to most/any medications and I know from experience that if something is going to work - it will pretty quickly.

Medication I have had so far is - Ropinirole - lowest does possible and had headaches 24/7 and several migraines ( which I do suffer from and know how to manage them) so after 3 weeks stopped that. Then I was tried on pramipexole - lowest does - and after one dose I virtually collapsed, it was terrible, I thought I was going to die - so took no more of that.Then put on very lowest dose of Gabapentin and did not have any effect after 2 months my GP suggested I stopped taking it.

It was a while then before I saw the consultant who then said I needed to try Gabapentin again despite the side effects and gradually increase dose which I did until taking 400mg - 3 times a day. Had side effect of terrible sleepiness during day, very lethargic and felt as though I was only operating on 3 cylinders. My concentration, spatial awareness, dexterity and balance were all affected to some degree. Felt like a zombie. My GP took me off that.

Then I have just tried Clonazepam. One half of the lowest dose and only took it for 4 days as felt my head was full of fog, balance not good and very disorientated as well as extremely sleepy. My GP took me off those and said I should wait to see the consultant again which is later in April.

I have had all the blood tests to check for everything possible and all normal. Had a nerve conduction test, test for reactions and circulation, all fine. I only get the pain in my foot during the day - it gets worse as the day progresses. When I get into bed it takes a while to settle and then its fine and I have no problems sleeping and never have had. Nor have I ever had uncontrollable limb or foot movements.

I am not able to take Ibuprofen or similar as not recommended with hypertension medication but do occasionally take 1 paracetamol which helps a little. Do not want to continually take pain killers if at all possible.

I do have arthritis in my back and have scoliosis at the point in my spine level with my hip and interestingly on the same side as my problem foot. I often wonder if its connected to that as when I am in prone position it virtually goes away. My consultant does not agree with that theory.

I would appreciate your advice or comments as several people from the Forum have suggested it does not sound like RLS. I have suggested this to the consultant but he is adamant that it is RLS.

Margaret N.

A Medical Reply

It does not sound as if you have RLS. However, you can check below and review the RLS diagnostic criteria and decide for yourself:

Essential Diagnostic Criteria (all must be met)
1. An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.
2. The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.
3. The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
4. The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day
5. The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).

The most important criteria is the urge to move your leg (or foot in your case) which relieves your symptoms. If your symptoms do not occur only at rest (and position should not be important) and get better with activity (such as walking), then you do not have RLS.

Sent: Sunday, April 22, 2018 5:52 PM
Subject: Restless Leg Syndrome for many years.

I have written to you in the past and always appreciate your advice. I have been on almost every drug for RLS at one time or another, but I would appreciate your opinion on the use of the Rotigotine Patch for RLS. I have not seen much information with regard to this method for RLS and would appreciate any information you can give with regards to switching to this method since my RLS is MUCH worse since my back surgery in March. I have had to walk the floor almost daily since having this surgery. My RLS is “out of control” and the Mirapex (.25 mg, 3 per day and one tramadol) I am on and have been taking for many years, seems to have lost its mph !!!

Rosemarie H.

A Medical Reply

Changing to Neupro (rotigotine patch) will likely not be helpful as you are already on a high dose of Mirapex which the approved doses of Neupro really can't match (and you should not go above the approved Neupro 3 mg).

The problem that you are most likely experiencing is augmentation (a worsening of RLS from taking a dopamine drug like Mirapex) and the treatment is to get off the Mirapex. As I am sure you can already appreciate, that can be quite a difficult task. It most often required potent opioids. There are not many doctors well versed in treating RLS augmentation or comfortable prescribing opioids.

Sent: Tuesday, April 24, 2018 12:31 PM
Subject: RLS treatment

I am 37 and have suffered from RLS/PLMD in my arms and legs since my early teens. Over the years I tried every traditional and non-traditional treatment. I found that Vidocin worked wonders and stayed on that for about 4 years before being switched, by the only neurologist that had any idea how to treat me, to methadone. I have been on 5 mg of methadone for about 7 years now. Last August I started seeing a pain doctor, because he has more knowledge of methadone, and he increased my dosage to 5 mg/2 times a day.

I had a flair up that lasted longer than normal last month. When I brought it up to the pain doctor, he mentioned Ketamine. He said that I could get it through a compound pharmacy in a cream form to use daily on my limbs, when needed. He also mentioned that Ketamine IV infusions were becoming popular for treatment of neurological disorders from anxiety to nerve problems. I have not been able to find too much information on Ketamine, other than negative comments. I wondered if you were able to provide some more information. Is it as dangerous as it sounds? 7 years ago, and still sometimes currently, I get the same crazy looks when people hear about methadone being used for something other than drug addicts.

Melissa

A Medical Reply

I would not recommend Ketamine for RLS. There is a much better chance that it would worsen RLS (especially if it causes sedation) rather than help.

Did you increase the methadone recently due to a flare up of your RLS symptoms? If so, you might be able to decrease the dose (try decreasing by ½ tablets) to see whether a lower dose may still be effective.

Sent: Tuesday, April 24, 2018 7:19 AM
Subject: Pramipexole withdrawal and Lyrica

I am off pramipexole for 6 weeks and 2 days. Also on 250 mg of Lyrica for 7 weeks now (I have been gradually increasing the dose) but still have wild RLS especially at night and also during daytime if I lie down.50 mg of tramadol didn't help at all so I don't take it any more. I am very worried about Lyrica's effectiveness.

I live in Greece and there are no RLS experts here. Could you please do any suggestions for me?

Ektheoha,
Greece

A Medical Reply

By six weeks, most patients are over the withdrawal problems from taking pramipexole. However, sometimes, it can be an issue for up to a few months.

Lyrica might be a little more effective at somewhat higher doses (300-450 mg) but that may be less likely (and side effects increase).

The solution would be to add a more potent opioid (tramadol is not very potent) like oxycodone or methadone. That would most likely take care of your RLS symptoms. However, you may find it difficult to get doctors in Greece (or many other countries) to prescribe potent opioids for RLS.

Sent: Wednesday, May 9, 2018 6:18 AM

Subject: Restless legs

I am currently taking 2mg of ropinirole twice a day for RLS, I seem to get better results if I take 1mg around 9am and 1mg around 3pm and then the 2mg about 9pm at night. I discussed this with my VA doctor and he did not give me a clear answer. Would you please give me your thoughts on this.

Lawrence P.

A Medical Reply

There is nothing wrong with splitting your ropinirole dose by taking parts of it throughout the day (as long as you don’t increase the dose).

The real issue here is that your RLS now starts early in the day (which I assume from your need to take the ropinirole at 9 am). This likely means that you are experiencing augmentation which is a worsening of your RLS from taking a dopamine drug like ropinirole. If your RLS continues to worsen, you may have to consider getting off the ropinirole and changing to alternate therapy.

Sent: Sunday, May 13, 2018 4:49 AM
Subject: RLS

For years I suffered with sleep 2 hours up, back to bed 2 hours up and my M.D. never prescribed anything or would he even address it, then he retired. Sought a new family physician and ended up with a D.O. which I had before the M.D. first visit he said RLS, prescribed 1mg Klonopin which helped me fall asleep in 15 minutes instead of the usual 2 hours but still up and down, so he added .25 Mirapex and I slept until about 4:30am, then could fall back to sleep, but he wanted me off the Klonopin.

So after a month he upped the Mirapex to .5 and reduced the Klonopin to .5. The first night I had vivid disturbing dreams which I remembered when I got up, don't like them. Will I get used to the dreams or will they stop after some time? I know my D.O. wants to get me off of the Klonopin and just depend on the Mirapex, but I don't like the nightmares.

Hutch

A Medical Reply

There are a few issues with your RLS treatment. Klonopin does not treat RLS but only treats the insomnia caused by RLS. It is a very addictive drug and can be very hard to get off (as you are not finding out). It also has a very long half-life of over 40 hours so often causes next day sedation. It is best to treat the RLS symptoms so that no sleeping pills are needed (and if they are, then much shorter acting ones are preferred).

Mirapex works great initially but with time, it tends to worsen RLS (called augmentation which is not well known by most general doctors) and higher and higher doses are needed.

A better choice would be drugs like gabapentin, Horizant or Lyrica but now that you are on a high dose of Mirapex, it will be very difficult to transition.

Sent: Monday, May 14, 2018 2:28 AM
Subject: Restless legs

I have had restless legs since I was a child but the symptoms were intermittent.

In the last 3 years I have had 3 spine surgeries (c2-6 fusion and laminectomy, C7 and T1 fusion and lumbar laminectomy) and whether or not that has any bearing, I do not know but over the last 10 months my restless legs have become a daily occurrence.

I live in La Paz, Mexico - at the end of Baja California. We have no sleep disorder specialists here but my internist has prescribed 25/250 levodopa/carbidopa but really has no idea. He told me to take one pill at bedtime, but that is not adequate as the restless legs can flare at any time during the day, as well. So I now take 1/2 a pill every 4-6 hours during the day with a whole pill at bedtime. Under that regime, I do get relief but I am scared to death of augmentation.

The only additional prescribed medication that I take is lisinopril 10 mgs daily and gabapentin 400 mgs twice daily. I supplement with magnesium, potassium, vitamin E, B- complex and a multiple vitamin. I sometimes will take a Tramadol (100 mg) hoping it will help and it sometimes does, but not consistently.

Linda Z.
La Paz, Mexico

A Medical Reply

Unfortunately, it is too late to worry about developing augmentation as you are already there. Sinemet (carbidopa/levodopa) typically causes augmentation within weeks when taken on a daily basis which is why we recommend against taking it for RLS (only since 1996).

Sent: Monday, May 14, 2018 4:28 PM
Subject: oxycodone vs gabapentin

Thank you for your prior responses to my inquiries. You helped me to survive withdrawal from Mirapex.

After a long withdrawal period, I have been taking oxycodone now for several months. I take 5 mg when I go to bed and then usually need to take another 5 mg a few hours later. Sometimes 5 mg is adequate. I have never exceeded 10 mg total and this has helped tremendously with my sleep.

During withdrawal, my physician did suggest gabapentin which I did try for several days, on three separate occasions, but this medication seemed to make my symptoms worse. It was taken during the weeks before withdrawal to try and transition to a new drug, during withdrawal again and after withdrawing from Mirapex. I only took it for 3-4 days each time.

Do you believe it would be wise to try using the gabapentin again in place of the oxycodone? Which medication has the least long term risks/side effects? Gabapentin or low dose oxycodone? Can you develop a tolerance to gabapentin? I have read that you can, but my physician does not think so. I do not want to be in another situation like I was in getting off Mirapex. I feel fortunate to have survived the ordeal.

Mara R.

A Medical Reply

First, to answer your questions; Tolerance typically does not develop to gabapentin. The long term side effects are pretty minimal with both opioids and gabapentin so that is not an issue.

It is usually very difficult for patients who have experienced augmentation from Mirapex to be maintained on gabapentin alone. Opioids are almost always necessary to achieve adequate control of RLS symptoms.

For patients who transition from Mirapex to low dose oxycodone (5-20 mg per day) and are having no medical issues with this therapy (like severe constipation, drowsiness, etc.), I often suggest that we just stay on the low dose opioid therapy.

Only when patients are having issues with oxycodone therapy (such as needing a very high dose or significant side effects) do I suggest adding (not substituting) gabapentin (or Horizant or Lyrica) to decrease the oxycodone dose. It is very rare when I can then eliminate the oxycodone and still control the RLS symptoms.

A Reply from Mara

Sent: Friday, June 1, 2018 2:23 PM
Subject: Re: oxycodone vs long-term oxycodone

I have been taking 10 mg of oxycodone for about five months to treat my RLS. I take 5 mg an hour before bed and this lasts about 4 hours at which time my RLS symptoms return and I often need to take another 5 mg which works after about 30 minutes for the rest of the night. I have been able to tolerate the side effects with splitting the dose.

According to your paper , The Appropriate Use of Opioids in the Treatment of Refractory Restless Legs Symdrome, sometimes an extended release oxycodone is recommended.
I have tried taking the 10 mg of oxycodone at one time, but the side effects are uncomfortable.

Do you think taking 10 mg of the extended release oxycodone would have the equivalent beneficial effect as taking two doses of 5 mg oxycodone with the possible benefit of allowing me to avoid getting up due to the return of symptoms ? My wish is to take whichever medication has the least long term concerns.

Mara R.

A Medical Reply

It is quite likely that OxyContin (sustained release oxycodone) at 10 mg (the lowest dose of this medication) might do what you are describing. However, trial and error are the only way to know for sure.

Methadone (much cheaper than brand name OxyContin) would be another reasonable that works well since it lasts much longer than oxycodone.

Sent: Saturday, May 19, 2018 3:55 AM
Subject: refractory RLS, can you help?

I am a nurse practitioner whose husband has had RLS for 40 years, now extremely refractory. He was seen in Mayo in January. We started Horizant, weaned his pramipexole from 3 mg to 0.5 mg over 3 months. Our physician prescribed Oxycodone to help with the augmentation while weaning, although it did not help much, so he took it rather infrequently. Over the pasts 2 weeks, his RLS has worsened, with almost constant movement -he can’t sit for 10 seconds, and goes up to 72 hours straight with no sleep.

He saw his physician, who increased the Horizant to bid and told us to push up the Oxycodone. Took 30 mg with no effect and had an ED visit that night. He received 18 mg of IV MS, which was enough to help him sleep, slowed his movements but did not eliminate them, and allowed him to sleep 8 hours that night. The next night it all started again. The most Oxycodone he took in a day was 60 mg, again, with poor effect. We started iron infusions. His ferritin before starting was 93.

Today his physician started Methadone 5 mg bid. He’s worse than ever again tonight. Obviously, the more sleep deprived he becomes, the worse the akathisia. If he sleeps, it improves. I should tell you he also uses marijuana - it has been most helpful but not when he is like this. Here are my questions:

1. How fast can we titrate the Methadone?
2. Should we stop the Pramipexole completely? Is all this movement still augmentation from the DA, or is it indicative of how severe his RLS is?
3. Any other ideas?

Thank you so much for your work. I have read your book and am watching the webinars on the Foundation member site.

Judy T.
Billings, MT

A Medical Reply

I can give you some general advice of what options/choices available for patients with this type of problem.

As long as the pramipexole is on board, the augmentation may continue and it is very likely that his RLS symptoms continue to be severe due to the augmentation and the decrease/persistence of the pramipexole dose. My goal is to get the patient completely off the pramipexole as after a short period of time (1-3 weeks typically with 10 days being the average), the RLS augmentation will reverse and the RLS will become much easier to control.

For those 10 days or so, the RLS can be quite difficult to control and high doses of methadone (up to 10 mg tid) may be needed although most patients can get by with significantly less. The methadone dose may be increased or decreased as quickly as needed or tolerated. Once the augmentation is resolved, the methadone can be slowly decreased (by 1/2 tablets) until the lowest dose is found.

Sent: Monday, May 21, 2018 4:46 AM
Subject: I need help

I am a 42 year-old female currently taking Mirapex 2mg at night for RLS. I have a strong family history if RLS on my mother’s side. My mother, her brother, her aunt, and several cousins have RLS. I have had symptoms as far back as a child. (The pediatricians told my mother, and I several times it was just “growing pains”). I started taking Requip in 2006, and within 1 year had gained over 40lbs. I was then transitioned to Mirapex with 0.25 mg in 2007, and I am now taking 2mg.

I have been experiencing severe side effects including visual disturbance, extreme daytime sweating episodes, drenching night sweats, daytime sleepiness, abdominal pain, diarrhea and mood changes. Despite taking 2mg, I still at times experience RLS symptoms in the afternoon and on my drive home from work. What else can I take? (By the way, I attempted Neurontin once with no results). Is the dose too high, thus causing the severe side effects? Is it possible to reduce the dose without being absolutely miserable?

Ariane D.

A Medical Reply

The real issue with your treatment is that you are suffering from augmentation which is a worsening of RLS from taking a dopamine drug (like Mirapex or Requip) after an initial period of RLS relief from taking the drug. You are already on a very high dose of Mirapex as the highest recommended dose is .5 mg per day. It is quite likely that many of your physical complaints are due to the high dose of Mirapex.

Adding gabapentin (or even the better absorbed and more effective Horizant or Lyrica) at this point will not be very helpful. These drugs would have worked better before ever taking a dopamine drug.

The treatment for this type of severe augmentation is to get off the Mirapex. However, as you have already noted, even decreasing the Mirapex will cause your RLS symptoms to increase markedly. It typically take a potent opioid (like methadone, oxycodone, etc.) to help transition off the Mirapex without incredible suffering (this process can be quite safe and effective if done properly). With proper treatment, most all patients with even severe RLS augmentation should do very well once the process is done.

You will have problems finding a physician who will both prescribe opioids to treat RLS and has adequate knowledge to treat severe RLS augmentation.

Sent: Tuesday, May 22, 2018 3:59 PM
Subject: RLS

A year and a half ago I augmented on Pramipexole. After trying opioids, I have been on the Neupro patch 1mg and 300mg of Gabapentin. Until recently, this has taken care of the RLS. However, the last few nights I have had RLS symptoms again. I see a neurologist in 4 weeks. I am certain he is going to increase the Neupro to 2mg. I am so afraid of augmenting again.

Should I be afraid of the 2mg or should I try it with the understanding that I will never go higher than that? Should I try the 600mg of Gabapentin first?

Sherry G.

A Medical Reply

It is probably wiser to increase the gabapentin to 600 mg before increasing the Neupro. Even though augmentation rates are low with Neupro up to 3 mg, augmentation is dose related and you will be more prone to repeat augmentation even with Neupro. The only issue is that gabapentin get poorly absorbed at higher doses so may not be that effective at higher doses. Horizant and Lyrica are similar in action to gabapentin but do not have the absorption problems even with very high doses.

Another option to consider is to add tramadol or a low dose of an opioid.

A Reply from Sherry

Sent: Friday, June 8, 2018 6:01 AM
Subject: RE: RLS

The increased dosage of Gabapentin ( from 300mg to 600mg at night) seems to only be effective some of the time. As I said previously, I see the neurologist on Monday. I am sure he will want to increase the Neupro to 2 mg. Should I even try that. I am also taking Wellbutrin and have read that taking Tramadol with Wellbutrin is not advised since it increases the chances of seizures. I so appreciate your advice.

Sherry G.

A Medical Reply

Again, you may not be absorbing the gabapentin that well at the higher doses. A change to Horizant or Lyrica may be very helpful.

There is an effect on the seizure threshold when combining tramadol and Wellbutrin but at low doses of tramadol this is usually not very clinically significant (in patients without a history of seizures). However, low dose oxycodone does not have this seizure concern.

Increasing the Neupro dose is not unreasonable but I would still recommend considering the above other 2 options.

Sent: Tuesday, June 5, 2018 2:41 PM
Subject: RLS help

Hello, I am writing with regards to my RLS, my doctors will not listen to anything that has been suggested for me to try. I currently haven’t slept in my own bed for 2 weeks now, I have the occasional nod on the sofa. I am taking 2 100 mg pregabalin in a morning and 2 at night, with 2 low dose co-codamol 4 times a day, to no affect at all, I cry every day, I’ve considered ending my life on numerous occasions, I cannot take the pain and feeling anymore. I cannot take strong medication as it makes me have panic attacks. I’ve tried all the dopamine agonists, tramadol etc. Have you any suggestions please, to which I could show my doctor, who will hopefully take note.

Lisa T.

A Medical Reply

I would suggest you have your serum ferritin checked. Normally we reserve intravenous iron infusions for patients with serum ferritin levels under 50-75 but in your case it may be very beneficial to get the infusion and bring the ferritin level to between 250-300.

Otherwise, changing the co-codamol to a stronger opioid like oxycodone might be the only very likely successful treatment. You could start with a very low dose (like 1/2 of the lowest strength 5 mg tablets) and work up to higher doses slowly.

Other aids such as the Relaxis vibration pad might be helpful if you can get first some additional benefit from drug therapy.

Sent: Tuesday, June 5, 2018 8:24 PM
Subject: RLS and weather/pressure fronts

For years now I have noticed that even on my medication which normally keeps my RLS under control, on days when it would rain or when the weather would turn colder weather that my RLS would always get way worse and even prevent me from sleeping sometimes for the entire night. So I started paying attention to weather patterns and noticed that my RLS gets worse whenever the barometric pressure decreases. Since it's virtually impossible to try to pressurize my house I was wondering if you know if there's any sort of medication or medical device that might be able to create a pressurized environment for my legs?

Also, I've looked into the 'Air Pressure Leg Massager' devices sold online but those usually have an auto shut off after 15 minutes so they wouldn't help me sleep the whole night. I've seen these devices in hospitals where they are used on patients to prevent blood clots but I'm not sure what those are called or if they are available to the public?

Last question is, have any of your patients ever noticed that air pressure (cold weather fronts, air planes, etc) cause their symptoms to become a lot worse?

A Medical Reply

Many RLS sufferers do notice a relationship between weather and their symptoms. The most typical is worsening in the summer but this can be variable. I have not heard of RLS patients complaining of changes in their symptoms due to barometric fluctuations but of course, anything is possible.

Instead of trying to pursue measures to control pressure changes in your legs (I doubt that you will find anything that works), I would suggest treating your worsened symptoms with a quick acting medication or device (like the Relaxis pad) when needed.

Sent: Friday, June 8, 2018 11:00 AM
Subject: Chemotherapy and RLS

I have had RLS for 30 years, mild at first and slowly becoming moderately severe. In recent times I have been taking hydrocodone 2- 3 mg, one half Sinemet and 900 mg gabapentin, all at bedtime, a regimen that allowed me to get to sleep on most nights. I was diagnosed with cancer a few months ago and started chemotherapy 7 weeks ago including cisplatin. One of the common side effects is peripheral neuropathy and I've had quite noticeable tingling and numbness in left foot, mainly in the evening. In addition my RLS has worsened....I now take 5mg and a whole Sinemet (plus the gabapentin) and it is not enough. Usually it takes several hours of trying to fall asleep, getting up and pacing around, and repeating.

Do you feel that it's possible that cisplatin induced nerve damage could be contributing to my RLS?

My second question has to do with iron. My ferritin was in the low 30's prior to chemo and hasn't been checked since. I read in the literature that chemotherapy can deplete iron as can cancer itself. My suspicion is that I may have become significantly iron depleted and that this is a factor in the increased RLS. I suggested to my oncologist (a wonderful doctor who is extremely expert in this cancer) that some iron be included in my IV treatments and she was unreceptive.

I tried so hard over the years keep my medicine dose low to forestall tolerance and now all of a sudden I need a lot more. I'm in a quandary about whether to just go head and increase the hydrocodone as needed (I feel quite sleep deprived) or really push the issue of iron status. I would be most grateful for your opinion.

John VD

A Medical Reply

There are several issues with your treatment that may be making your RLS worse. First of all, taking Sinemet every day makes the likelihood of augmentation (a worsening of RLS symptoms due to taking a dopamine drug) occurring very high. We have advised against taking Sinemet daily since 1996. However, stopping the Sinemet will temporarily cause a marked increase in RLS symptoms so some fairly expert treatment is necessary. As long as you take the Sinemet (especially at increased doses), your RLS will continue to worsen and be very difficult to control.

The next issue is your low iron levels. Although many doctors including hematologists do not get too concerned with low ferritin levels as long as your hemoglobin is reasonable, this may be a very significant reason that your RLS is worsening. We recommend getting the serum ferritin way above 50-75 at least but with an intravenous infusion, between 250-300. Higher ferritin levels are often necessary to get enough iron into the brain and improve RLS symptoms. Attached is a recent article on the use of iron for treating RLS.

Increasing the hydrocodone will certainly help on the very short term but if you don’t address the above issues, you will have to keep increasing the hydrocodone to very high levels.

Date: June 12, 2018 at 3:29:15 AM PDT
Subject: RLS problems

I am hoping some of you can weigh in on this. I have had restless legs syndrome since 2012 and have tried practically every medicine, prescription and over the counter, folklore, et cetera., for restless legs syndrome, and the only thing that has consistently helped me is Requip 2 milligrams at bedtime. Unfortunately, I developed daytime restless legs syndrome a few months after being diagnosed and, consequently, after starting on Requip. At the time, I wasn't on this forum and knew nothing about augmentation. Not even my neurologist who I've seen for several years now has suggested that augmentation could be a part of my problems.

But since the Requip still works for me and have stayed at 2 milligrams at bedtime I have kept taking it as it's the only thing that has helped me at night. For my daytime restless legs syndrome I've tried so many prescriptions for restless legs syndrome (Mirapex, Horizant, Neupro, et cetera) and the only thing that helped me without the awful side effects was strong opioids, but my neurologist won't prescribe them, and my general practitioner won't prescribe them because of all the talk about abusing opioids lately in the news. Even my pain doctor will only prescribe me Tramadol at 50 milligrams three times a day, but it doesn't work very well. So that is my history with this miserable condition.

Getting to my question, I had two iron infusions two years ago after finding out my serum ferritin was very low. After those infusions I was completely free of restless legs syndrome for two weeks but then they came right back. I've been getting my ferritin level checked regularly and it remains above 100. So I haven't had another infusion. But I've been complaining to my neurologist recently and he has offered to write me a prescription for another iron infusion.

Does anyone on here know what is the highest ferritin level that is safe? Because I know it can be dangerous if you have too much iron. Oh, lastly, I forgot to mention that in 2008 I had gastric bypass, and I no longer absorb vitamins and iron, et cetera, very well by mouth. So even if I take a lot of iron orally, my body just doesn't absorb it to where I benefit from it. Maybe that was the precursor to my eventual restless legs syndrome? So because of that, iron infusions are in my future for the rest of my life. I'm just not sure how high I should go with this. I feel like the hematologist that did my first two infusions doesn't want to go much above 100 for the ferritin level. But I know it was as high as 254 after the infusions (which were about three months apart) and I know I had two weeks with no restless legs syndrome at all shortly after getting the infusions. So I feel like there has to be a benefit with me getting the iron, but how high can I safely go?

Lana E.

A Medical Reply

There is little question that augmentation is causing your daytime RLS symptoms which will continue to get worse. The best treatment for augmentation is getting off the Requip but that will require potent opioids. You will need to see a doctor who is well versed in treating difficult augmentation cases and who is also willing to prescribe opioids. Otherwise, you will likely continue to do more poorly as time goes on.

Although we suggest that the ferritin levels should be above 75, many patients actually require much higher levels to get enough iron into the brain. Some patients even need levels above 200. We normally shoot for ferritin levels between 250-300 (which is quite safe). In patients with gastric bypasses who absorb iron less well, more frequent iron infusions may be necessary (sometimes up to every 3 months). Iron and ferritin levels should be checked 6-8 weeks after the infusion to see if they are staying up. The only iron preparations that works for RLS are INFeD and Injectafer. The other ones tend not to be helpful.

Sent: Thursday, June 14, 2018 8:25 AM
Subject: RLS under control, but what to do about the insomnia and tramadol-associated heart palpations

I know I have severe (=nightly) RLS since about two years, although in hindsight I remember having had RLS-episodes since my mid-twenties.
Initially I was given ropinirole, but I augmented within four months on it, although at that time my dose was still only 0,75 mg.

My next prescription was tramadol 50mg combined with gabapentin 300 mg, the latter mainly to assist in sleeping, and both taken only in the evening. After 1-3 months the combo became less and less effective. Upping the gabapentin dose (to a max of 900 mg) didn’t help with the RLS and caused negative behavioral effect (depression, exhaustion). Upping the tramadol to 100mg worked very well for the RLS, although induced sleeplessness and most of all incessant heart palpitations, so I cut back to 50 mg again. My awake-periods during the night slowly increased in length and frequency. Recently I realized the combo had ceased working, already for a while. Stopping the tramadol indeed made no difference.

I reverted to the ropinirole, which again works well at the lowest dose of 0,25mg. But I don’t want to go through augmentation again. I decided to ask my GP/PCP for oxycodone (5mg) to replace the tramadol and to rotate between the ropinirole (Fri-Sa--Sun) and oxycodone (Mon-Tue-Wed-Thu; the oxycodone 5mg works well too). I read about this in the (2012) by Lee et al. and read about it on the RLS-forum of Health Unlocked. I hope to forestall tolerance and augmentation with this approach.

My question to you: What is in your experience the best way to rotate medicines to reduce the chances of tolerance and augmentation? Would my current schedule do? Or would you rather advise a daily change between ropinirole and oxycodone? Or a monthly one?
My GP/PCP doesn’t know much at all about RLS and my neurologist does know a fair amount, but was clueless about the optimal rotation schedule. I hope you can draw from your vast experience.

Lotte

A Medical Reply

There may be no reason to alternate medications in your case. Taking oxycodone alone at 5 mg daily (or even significantly higher doses) should not result in tolerance or loss of effectiveness of the oxycodone. Since we usually like to keep things simple, it would most likely work out best to just use the oxycodone on a daily basis without adding other drugs.

When rotating drugs, the interval of rotation depends upon what you want to avoid that may occur when using the drug for longer times. For example, if the ropinirole causes augmentation is 3 months, then rotating it every 2 months or so (before the augmentation may occur) would be a reasonable choice. When rotating it with a opioid, the typical reason to change back would be if the opioid causes constipation, depression, etc. when used for a certain time (then of course, it should be stopped before this problem occurs) then you would go back on ropinirole.

However, as I have mentioned, there is most likely no reason not to just stay on the oxycodone alone and indefinitely.

Sent: Saturday, June 16, 2018 11:48 AM
Subject: Any info about the effectiveness of prazosin for RLS

I wonder if you have any information about the drug Prazosin in relation to RLS treatment. I am always looking for something new and without the potential for augmentation or the effect wearing off.

Someone has told me that their RLS disappeared when they were given Prazosin for PTSD. I won’t go into details and don’t have classical PTSD but there is no doubt I have suppressed over the years many many very unpleasant experiences as a result of a family member with schizophrenia including being assaulted. I have never thought of trying to treat these after effects.

I read that those with PTSD often have PLMD as part of their sleep disturbance which I know is often associated with RLS (don’t think I do ). My RLS is very severe with several episodes each night.I have had various treatments for hypertension for many years ( none have exacerbated my RLS as I’ve tried the effect of committing each for several weeks. I am wondering whether it is worth trying to swap one of my tablets for Prazosin just to see the effect.

I wonder if there is any research on the go about Prazosin and RLS or anecdotal knowledge. At present I take only Codeine 30mg at night,. I’d prefer not to take an opiate all the time or any of the more commonly used treatments - some I’ve tried with unpleasant effects, for RLS apart from trying to increase ferritin, currently 80.

Alison M.

A Medical Reply

Prazosin is an older blood pressure drug that blocks the alpha 1 receptors. It has recently been used to help PTSD patients at very high doses to block nightmares. There are no studies with this drug and RLS. I have seen only a few RLS patients on this drug (it is both older and not that effective) but have not heard of any benefits for RLS.

I cannot rule out that it might help RLS (but that would be a long shot given its mechanism of action) but I would not waste my time trying this medication (and it could cause dizziness and falls by lowering your blood pressure).

Sent: Monday, June 18, 2018 4:02 AM
Subject: RLS

I have had RLS for approximately 13 years. I have been on ropinirole for many of those years but symptoms have started to worsen due to augmentation. My PCP recently suggested carbidopa-levodopa 25-100. It's just not happening and I'm am so frustrated. I read briefly about Relaxis but the price is just not in my budget. I have been reading a lot of positive results using opiates....I understand doctors hesitation about prescribing but I'm going to approach mine about it.

My fear is that I'm a recovering alcoholic (18 yrs) and that any physician wouldn't even consider it.

Susan T. (want to cut my legs off in Vermont!)

A Medical Reply

Once you have augmentation from ropinirole, there are not a lot of options. Sinemet (carbidopa/levodopa) would have been a big mistake as it causes augmentation even more quickly than ropinirole and in a much worse way. It is very likely that opioids will be the way to go even with your history of alcohol abuse. The Relaxis pad would not be that helpful when trying to combat augmentation.

A Reply from Susan

Sent: Friday, June 29, 2018 12:43 PM
Subject: Consult?

Nights have not gotten any better. My PCP thought we could try diazepam (disastrous effects) and zaleplon (did nothing) and recently zolpidem which I will try tonight. We were thinking if I could just get to sleep.....maybe the "leg demons" would leave me alone! I think the demons are much stronger!

So my reason for today's email is to ask if it is possible for you to speak with my PCP and maybe advise him on what may help.

I'm due to have total right hip replacement on July 24th. I had the left hip done May 14. The surgery was nothing compared to the restless legs I dealt with in the hospital!

Between lack of sleep and surgery recovery with another one soon.....I'm just feeling done and desperately in need of help.

I seriously thought of a visit to see my brother in Dana Point and tie in a visit to you. If I didn't have the upcoming surgery I think I would be on a plane right now.

Sue T.

A Medical Reply

Sleeping pills like diazepam, zaleplon and zolpidem may help patients with very mild RLS symptoms. However, once symptoms become more prominent, they are less likely to help. Furthermore, it is better to treat the RLS rather than just trying to knock yourself out to get to sleep.

I would suggest starting with Horizant, gabapentin or Lyrica to treat your RLS. If these do not help (or cause significant side effects), then Neupro would be the next choice.

Sent: Monday, June 18, 2018 8:02 AM
Subject: Advice about RLS and Serum ferritin level

I am male 72 years old with no health problems except RLS. I have had RLS for 60 years and it became serious about 15 years ago. At that stage I had RLS every night and couldn't get sleep until after about 6am Since I had to work this was very difficult. I have been on a low FODMAP diet plus excluding alcohol, caffeine lactose and gluten for a couple of years and this has kept it under control. This is restrictive and I would like to improve the condition. I am not taking any medication because I have unacceptable reactions to the drugs I tried.

I have read a bit about the value of having a high ferritin level. The advice I have been following suggests that a ferritin level of 100 is adequate to get as much improvement as possible from this treatment. Higher than 100 is said to have no benefit.

However I have recently heard of two separate cases of RLS patients who raised their ferritin levels and found an improvement at a much higher level. In one case it was improved at 250 and in the other case at 300 In at least one of these cases the RLS symptoms re=appeared when the ferritin level fell below these levels.
From this I would like to try to raise my ferritin level to see if I am lucky enough to gain some more relief that way and perhaps enable me to broaden my diet without RLS symptoms re-occurring.

According to a large Australian Pathology laboratory the normal range of ferritin is 35 to 500.
Can you please tell me if you know of any problems that might occur if I raise my ferritin level to 500? I am currently taking 68mg of iron diglycinate every second night with Vitamin C. This has raised my ferritin from 85 to 101 in about 8 months, That is much too slow to be of practical use. If there are no problems then I believe that I would have to have one or more iron infusions. Do you know if there are any high risks in doing this. My GP will approve this If I ask him to proceed.

Is the accuracy of ferritin analysis good enough for the increase in my ferritin levels to be significant? I have read of some very large variations between laboratories and between samples.

Graham R.

A Medical Reply

We have learned a lot about iron absorption and iron therapy for RLS in the past few years.

When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.

Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.

Ferritin tests can be fairly reproducible (and it is likely not a lab problem that causes variation) but must be done fasting without any excessive iron intake for the previous 24 hours. The other issue is that ferritin is an acute phase reactant so it may stay falsely high for as long as a month after inflammation (such as a bad cold). A low ferritin is always an accurate result while a high level could be falsely high.

There is no evidence that the low FODMAP diet has any benefit for RLS but as long as you are being supervised by a doctor (as this diet can cause medical issues), there is likely no other harm.

Sent: Friday, June 22, 2018 6:41 AM
Subject: Neupro patch location differences

I’ve had RLS for 11 years now, and it is moderately severe. I used to take only pramipexole, up to 2.5 mg/day, and had to do yearly washouts using oxycodone. 3 years ago, a neurologist convinced me to switch largely over to gabapentin, so I’ve been taking 0.5 mg pramipexole with 2100 mg gabapentin over 3 doses in evening. That worked pretty well, but resulted in very groggy, seated evenings.

I then switched to a new neurologist in Doctor Winkelman’s sleep lab at MGH. After doing a 2-week pramipexole washout using oxycodone and gabapentin, he put me on the 2 mg Neupro patch, with Horizant to supplement. I found the patch effective, but he Horizant made me too sedated well into the next day. So I’m now on 2 mg Neupro at 8 am plus 1800 mg gabapentin late evening. This is quite effective, but not always. (I am also taking oral iron, and have discussed possibility of IV iron if no improvement.)

So I have three questions:
1. I’m considering 3 mg patch so I can reduce gabapentin for less sedation, but am a little concerned about possible increased augmentation risk.
2. Location: the patch seems most effective when I apply it to my shoulders, but not so much elsewhere. Can you give me any guidance as to best locations, and whether this difference is real?
3. Should I try replacing gabapentin with Lyrica, and would that produce less sedation? Does it have a longer half-life, into next day?

Peter W.

A Medical Reply

The risk of augmentation does increase with the dose of any dopamine agonist drug. Therefore, 2 mg is safer than 3 mg. However, the 3 mg dose of Neupro is still relatively safe. Doses of 4 mg or more tend to cause more augmentation.

A better approach might be to add a small amount of oxycodone (like 5-10 mg) which might enable you to decrease the gabapentin and possibly even the Neupro.

Location should not make a significant difference on how well the Neupro gets absorbed and its effectiveness. I have not heard from any other patients about this possible effect.

Gabapentin and Lyrica have very similar half-lives that result in about 8 hours of activity. The major difference is that gabapentin is typically not well absorbed at higher doses (like above 600 mg) so you may not be getting everything that you swallow into your bloodstream. Lyrica gets much better absorbed so should be more effective at most doses. As far as next day drowsiness, you would have to try the Lyrica and slowly increase it (I usually start out at 50-75 mg) and see if it works better for you.

A Reply from Peter

Sent: Sunday, June 24, 2018 1:46 PM
Subject: Re: Neupro patch location differences

I agree that a low-dose oxycodone helps in the evening, with one drawback: it makes it hard to get to sleep, even at 5 mg.. I usually have to follow it with a 5 mg Ambien, which gets me to sleep, but I don't want to be taking that every night. Perhaps Lyrica would help counteract that oxycodone wakefulness better than my current gabapentin? If not, would a low-dose methadone be a better alternative to oxycodone, with less wakefulness? Or does that have longer-lasting mental effects into the next day than oxycodone?

Since I'm considering increasing from 2 mg to 3 mg Neupro patch: Do you find that those of us who have augmented on pramipexole in the past (as I have, several times) are more likely to augment on Neupro? And if I do, would you recommend abandoning all DAs in my case? Or just do periodic washouts?

I will continue to pursue iron, possibly IV. But if that fails, and if I do augment on Neupro and have to abandon DAs, it's possible that my options are limited to alpha-2-delta drugs like Lyrica plus an opiate. Would that be an accurate assessment?

Peter W.

A Medical Reply

Although the most common sleep related side effect from opioids is sleepiness, some patients do experience insomnia. However, this can vary from opioid to opioid. It is likely that methadone or another opioid might work much better but only trial and error can determine this issue.

If the opioid (like methadone) causes next day sedation, then another shorter acting one may be better.

Once you have experienced augmentation, you are more likely to experience it again. However, there is no way to determine this until it happens.

Your other questions should be addressed if and when they occur as many other factors will help determine the correct answer.

Sent: Thursday, June 28, 2018 2:21 AM
Subject: Restless Legs Syndrome

I have had Restless Leg Syndrome all my life but this has become a nightly occurrence since my menopause. Two years ago I suffered from severe augmentation from Ropinirole and was prescribed 50mg of Tramadol to help with the withdrawal symptoms. I have taken 50 mg of Tramadol every other night since (on alternate nights I tried to have a break and just suffered) but I am now finding that I need to take one every night and that it only lasts for 2-3 hours, if at all. I am reluctant to increase this to 100mg as I assume my body will just develop a tolerance to that also.

I do not have any pain but do suffer from dreadful insomnia and if I'm lucky I get 2-3 hours broken sleep a night. My ferritin level is 128.

I am wondering where to turn next. Should I try Pregabalin and would this be better supported by a small dose of another opioid? I have read that small doses of a couple of drugs may have better results than just one. (Although getting my GP to prescribe one may be difficult).

Pam W.

A Medical Reply

It is much less likely that you are becoming tolerant to tramadol as you are on a very low dose. It is possible that you could be developing augmentation from tramadol (the only non-dopamine drug that may cause augmentation) and although that is also dose related, it sometimes occurs at low doses. It is also possible that your RLS is worsening for other reasons (lower iron levels in your brain despite reasonable blood ferritin levels, other drugs that worsen RLS, increased stress, change in lifestyle or natural worsening of your RLS).

There are several reasonable choices for therapy:

1. You could increase the tramadol and see if this helps the RLS without making it worse after a few months or so.

2. You could add pregabalin (or Horizant if that is available) and that might help considerably. You can even try transitioning from tramadol to pregabalin alone (at higher doses) if that does not cause any side effects (typically sedation, dizziness).

3. You could change the tramadol to a very small dose of a potent opioid like oxycodone or methadone (which may be hard to get from your GP) and is very effective and safe over the long term.

Sent: Sunday, August 5, 2018 2:43 PM
Subject: Request for advice

I am an 82 year old male and have had Restless Leg Syndrome (RLS) for the past 40 years. I am in excellent health. However, over the past five years, lack of sleep due to RLS has had a negative impact on my energy level. I hope you can give me some suggestions to discuss with my Kaiser doctor here in Sacramento-Roseville. For your consideration, I will list my symptoms and medications I have tried.

I rarely have RLS before going to bed. For the past three years I have been taking 300 mg gabapentin at bedtime. After 1 to 3 hours of sleep, I awake with severe tingling from head to toe which forces me to get up and stretch. Returning to bed I could usually count on another 2-4 hours of sleep. One or two times a week when I could not get back to sleep, I would take 10 mg of Oxazepam. Recently however, sleep eludes me almost nightly. I do not want to take Oxazepam or Klonopin on a regular basis so I have been using a Relaxis Pad when RLS symptoms wake me. While the pad reduces symptoms to a tolerable level, I rarely go back to sleep. My doctor suggested I increase gabapentin to 600 mg taken at dinner time. If that does not help after two weeks, she suggested taking it at bedtime. I am still taking the medication at dinner time but have not experienced any improvement.

For 15 years I took ¼ to ½ mg Klonopin no more than 2-3 night a week on an as needed basis. A new doctor wanted me off of Klonopin and started me on Mirapex. Mirapex made symptoms worse and also made me anxious so I stopped after one week. Then I was put on 600 mg Gabapentin, 300mg with dinner, 300mg at bedtime. For a year I found 300mg at bedtime was sufficient to get 6-7 hours of sleep. When Gabapentin stopped working a year ago, I was put on Requip and had the same results as with Mirapex. Next we tried 50 mg Tramadol at bedtime. I started on half a pill which knocked me out. After sleeping 7 hours, I tried to get up but was too dizzy to walk. I took ¼ pill the next night but got little sleep and again experienced severe dizziness. I had somnolence and depression all day and no appetite so I stopped the Tramadol and went back to Gabapentin and an occasional Oxazepam as stated above.

I have eliminated all RLS triggers listed on your web site. My serum ferritin was 47 when first tested 7 years ago. I took ferrous sulfate until it was over 100. When tested last year it was back to 57 so I am taking 25mg iron bisglyscinate an hour before bedtime. My question is what should I considering doing next. Should I increase the Gabapentin? If so when is the best time to take it if RLS symptoms do not begin until after 1-3 hours of sleep. Or should I try a different medication.

Tom S.

A Medical Reply

It is hard to give you very specific recommendations as your case is somewhat complex.

However, there are a few guidelines that may help you. You can increase the gabapentin but gabapentin may not be as effective as you increase the dose due to poor absorption at higher doses. You can try (with your doctor’s permission) increasing the earlier dose and bedtime dose to 600 mg (starting at first with the earlier dose) and see if that helps and does not cause side effects (typically sedation).

Horizant might be a better choice (it gets better absorbed, even at higher doses) or Lyrica. However, both of those drugs are brand name only and thus not very Kaiser-friendly.

Another very reasonable option would be an intravenous iron infusion (with INFeD or Injectafer only) which works markedly better than oral iron (which typically is not that helpful, again due to poor absorption of iron through the gut).

Sent: Monday, August 6, 2018 10:43 PM
Subject: Requip - snoring

I have been taking Requip for RLS for about 2 yrs. Within 2 hours of taking Requip, I become congested in my nose & throat. My husband says I snore terribly & it’s very disruptive to his sleep. I also take Tramadol & Humira for Psoriatic Arthritis. (My father also has RLS & sleep apnea.)

I’m 44, eat healthy, have regular low-impact exercise (walking, yoga, kayaking) & a healthy weight. I sleep well with these meds. I never had this problem of congestion & snoring until I began the Requip. I understand it’s a rare side effect. Why does Requip cause congestion & snoring in some people? Would Mirapex or other RLS meds have the same effect?

Sandra G.

A Medical Reply

Dopamine drugs sometimes cause nasal/sinus congestion problems which in turn will lead to snoring (mouth opens and your tongue will fall back blocking your airway). This is more common with some of the older dopamine agonist drugs but can happen with any of them (not that common but not rare). It could happen with Mirapex but only trial and error can determine that (remember that Mirapex is 2-4 times more potent than Requip on a mg basis).

Horizant, gabapentin and Lyrica should not cause snoring.

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 118.
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